My Big Girl Pants

I Stand With Susan G. Komen

2012-02-10T23:56:00.006-05:00

Many of my friends, family, and blog readers have approached me over this past week because anyone who knows me knows I am in love with the work of Susan G. Komen for the Cure; I am a walker, a survivor, and a 3-Day Coach. Last week, when the news broke that Komen for the Cure decided to cease future funding of Planned Parenthood, thousands of women and men hit the internet to object. I will not revisit last week’s media firestorm. Plenty of people have already done more than enough recapping of every twist and turn.

Instead, I will share the reasons why I continue to support Susan G. Komen for the Cure. I will include links to absolutely everything I mention, so that anyone interested in learning more can learn more, and can do so by going directly to the source.

Deb

When I was first diagnosed with Stage IV breast cancer in 2005, I went to events put on by various other breast cancer organizations. At those events, I was surrounded by women with gray hair and grandchildren. I came home in tears, and felt so much older than 21 years old. Other organizations left me, a young cancer survivor, feeling so very much alone.

Deb, a 30-something breast cancer survivor, changed all that for me. It wasn’t until Deb, a spunky little gal with flowing brunette hair, a sweet Southern drawl, and two little boys, stopped by my chemo chair one day that I finally realized I wasn’t alone at all. You see, Deb stopped by chemo to drop off literature about her support group called Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was a support group for women under 40 who had been diagnosed with breast cancer. At the time, I didn’t even know there were other women under 40 with breast cancer, and this same wonderful Deb didn’t just offer support. She also offered education. Deb was the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.

Ann

Komen’s impact on my journey didn’t stop there. In the past six years, I have seen 10 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge, or “The Boss” as she is known around my house, never told me to “worry about that later.” Instead, she helped me take action to preserve my fertility. She offered to plan my chemotherapy around my wedding and honeymoon. She offered me a chemotherapy drug that wouldn’t cause hair loss, so that I’d look my best when I walked down the aisle. She even offered to answer any questions my soon-to-be husband might have about my cancer before the Big Day. Now that’s a doctor! Dr. Partridge is the kind of doctor who thinks about the well being of the patient and the well being of the caregiver.

I am proud to say that Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant. Not only that, but in addition to providing this program to lucky Dana Farber patients, this Komen grant allows “The Boss” to implement her Young Women’s Program in hospitals across the country, so that every young woman can get the same stellar, personalized care I’ve received regardless of where she happens to live.

So, as you see, I was supported by Komen, I was empowered by Komen, and I was cared for by Komen. But, have I been cured by Komen?

The Cure

I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.

I have been on 15 different drugs during my six year battle, and every single one has been touched by a Komen for the Cure grant, including Herceptin. Herceptin is a drug that targets my particular type of breast cancer and, in clinical trials, Herceptin has been found to reduce the risk of relapse by almost 50%. Herceptin has been the one constant in my dozens of “chemo cocktails.” Herceptin is in my current cocktail; it’s being used in combination with my friend Taxol. Herceptin is not a cure, but Herceptin is keeping me alive, and Komen gave me Herceptin.

But that’s the past. What about the future? Well, I can tell you that currently, Komen is funding 572 research projects totaling more than $300 million worldwide. In 2009, “The Boss” referred me to a clinical trial led by Dr.Leisha Emens at Johns Hopkins University. Dr. Emens is developing a vaccine that teaches a patient’s immune system to fight her breast cancer on its own, and the trial is having some fantastic results. While I was unable to get the vaccine because my cancer began progressing unexpectedly, I believe this vaccine idea could truly be the future of breast cancer care. Dr.Emens’ trial was funded in 2006 by a $300,000 Komen grant. To learn more about the other exciting clinical research that Susan G. Komen funded last year alone, click here.

I Will Walk

Last Wednesday, when this news first started breaking in the media, I was at the hospital getting chemotherapy. I thought that was pretty ironic…my afternoon was about to get even more ironic! That afternoon in the hospital actually helped me deal with the onslaught of unsettling news stories. Last Wednesday, during a routine blood draw, I found out that the tumor markers in my blood had increased from 75 to 99, a preliminary sign that my chemotherapy regimen might no longer be working. When the whole world began debating and questioning Susan G. Komen’s work, my cancer turned out to be a gift. I needed a reminder, and this news was a poignant reminder. I was able to see that, for me personally, the news about Susan G. Komen mattered, but it didn’t matter enough to sway me from the heart of why I walk.

So what did I do after I learned that my tumor markers rose from 75 to 99 last week? How did I cope with the news? I registered to walk in the 2012 Susan G. Komen Washington, DC 3-Day.

I walk because I have to go to chemotherapy every week, and I don’t want anyone else to have to live that life. I walk because I live with the heavy burdens of fear and doubt every day, like the fear and doubt piercing my heart tonight as I think of my rising tumor markers. I walk because I know that over the past 6 years I have been on 15 different drugs, and all 15 of them were touched by a Susan G. Komen grant. I walk because, while there are other charities out there, no one comes close to funding research the same way Komen does. I walk because this cause is too important to walk away. I walk because today someone is going to die from breast cancer, and I walk because I don’t want to die from breast cancer.

No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move past this. I believe we have already started moving, and I believe we are moving forward. I believe we will come out of this better, wiser, and stronger than before.

I hope each of you will be walking beside me this October, but I understand if that’s not the case, and I respect and support that. I wish all of you all the best. You are important to me, and I thank you for your service to this event and to the fight for a better world.

Counting My Blessings

2012-01-30T09:28:00.006-05:00

This past holiday season saw me simply blown away and counting my blesssings. When I left all of you at Thanksgiving, my tumor markers were up at 183. My tumor markers are now down to only 75. I had a scan at the beginning of the month to find out if the cancer was indeed shrinking as much as the tumor markers indicated. I am so thrilled to report that this week I received word that everything - the cancer in my bones, my lungs, my liver, my lymph nodes - everything is shrinking!

The most significant shrinkage was seen in my lymph nodes and my liver. One tumor in a lymph node previously measured 2.2cm X 1.3 cm. That tumor has now shrunk to 1.3cm X 0.7 cm! The tumor in my liver used to measure 4.4 cm X 3.7 cm and now is 3.7 cm X 2.5 cm! Taxol is indeed working. My body is healing. I am still far from cancer free, but there are no shades of gray or mixed messages. I was worried for months that cancer in one part of my body would shrink away, but that cancer somewhere else would stay stable, or worse, even grow. But now, all around I have only good things to celebrate.

That said, my blog has been so helpful and healing for me. It has truly allowed me to come to terms with the realities of my journey. This same time last year, I was also over the moon and enjoying the positive results from the TDM1 clinical trial. I was just as happy and optimistic for the future on New Year's 2011 as I am now on New Year's 2012.

I realize now more than ever how lucky I am to have more time. In October, I didn't think I had much time left. My, how up and down this year has been. All of this positive progress could all change tomorrow, it certainly has before. While it is wonderful and natural to dream of children and a house with a yard, I also should simply enjoy the small blessings I already have in my life.

Please indulge me for a moment while I catalog a few of my most recent blessings:

1) Last week, I watched Daisy experience her first snowfall.

At first she was extremely fearful, sitting down at the door and barking at the falling flakes. Slowly she ventured out onto our patio, but every few brave steps she took, she'd run back between my legs. After an hour or so of sniffing and barking, a light seemed to switch on in her little dog brain. All of a sudden my girl figured out she had nothing to fear. Daisy spent the remainder of the morning running around outside, bouncing everywhere with puppy joy. She stuffed her face into piles of snow and literally jumped off of our back steps into snow drifts. It was a joyful, puppy-filled day in our house, and by the end of it the house was a mess! I didn't care though. Watching a living thing that is under your care grow, change, and learn is really beautiful. I know she's only a dog, but she's truly remarkable.

2) I love my job, and I'm good at it.

All this month, I have had the pleasure of hosting Susan G. Komen 3-Day™ Get Started Meetings throughout the Boston area. I get to meet nervous new walkers, and talk people into joining me in the fight for a cure. It has been so exhilarating to hear other people's stories and to share my own. I get a thrill as I watch, first hand rather than online, as eyes get wide in the audience when I share my story. Heads shake and tears fall. Seeing that my struggle can convince an otherwise unmoved attendee to walk 60 miles and raise thousands of dollars has been exciting and humbling all at once. I am excited because I feel I am really making a difference in this world, and it has been humbling because I don't believe I am worthy of the love and support my 3-Day walkers have given.

Last night, I met a woman about a year younger than I whose mom was diagnosed over Christmas with Stage IV breast cancer. After an evening of crying together, I'd like to think she went home hopeful. I don't think she realized that I also gained so much from hearing her story. I wasn't crying for her. I was crying with her. I know all too well the horrible Christmas her family had this year because of breast cancer. I cried at that 3-Day meeting because, meanwhile, I had the best Christmas of my entire life. It felt so unfair, but I was thankful to have been reminded of my good fortune.

3) And now, on to Christmas...Christmas in Prague and New Year's in Vienna. There aren't words descriptive enough nor pages long enough to describe my trip with the Big Man to Europe. The trip was beyond our expectations. We were both full of nerves the night before our departure. This trip was taking a big dent out of our savings - savings we were planning to spend on that house with a yard or on IVF treatments to make that baby of our dreams. We both were nervous that we were spending this money on something silly. We hoped we had made the right decision. From the moment we took off, though, our fears disappeared. The adventure began on the plane as we held hands and toasted Merry Christmas over our in-flight dinner. It was wonderful to leave the world behind and experience a new reality hand-in-hand. No cancer, no appointments, no health insurance paperwork to sift through, no juggling a hectic schedule- only the thing that matters most...time together as a husband and wife. For one whole week we reconnected. Given all the fear and doubt, all the ups and downs of the past two years that we have tried to face with a smile, we realized that this wasn't money wasted on an extravagance. This was an investment. An investment in our marriage. An investment in making memories. Memories that will carry us through any other bad times to come.

4)My final blessing is one particularly special night from our trip. One night in Vienna, we were wandering the streets in search of a restaurant. I was grumbling because Big Man was walking too far ahead of me and because I was struggling on the cobblestone streets and sidewalks in heels. It was cold and I was cursing the quaint but impractical cobblestones. We had tickets to the Opera and we only had an hour and a half left. Our tummies were empty from a long day of sightseeing, and we were both grumpy and concerned that we would be late for the Opera. We were short with one another. Voices may have been raised.

Finally, we found a restaurant name we recognized from our trusty Rick Steve's Guidebook. We walked out from the cold and into a total time warp. We were in the Vienna of the 1800's. The restaurant was all dark wood panelling with moose heads on the wall. The waiters wore liederhosen. The food that went by us on a tray was all meat, potatoes, and rich dark sauces. We were seated in a deep booth next to a table full of 90 year old men. The youngest might have been 89. They were all smoking and drinking and toasting and talking loudly in German. For some reason, I didn't mind the smoke. No one else was smoking, only this old table full of regulars who had probably been coming to this restaurant since World War II.

As the men raised a glass for their fifth toast of the evening, I raised mine too, and, opening the Guidebook to its page of commonly used phrases, I wished them a good evening and said I loved Vienna. The whole table turned and started speaking excitedly in German. I looked to Big Man, who shrugged and was laughing at my attempts to communicate. But a smile and a raised glass is universal, and they were patting our backs and trying to include us in their conversation for the rest of the evening.

Our Seats!

After an incredible meal that had Big Man and I making eager grunts to one another over our enormous plates of goulash, we left our WWII buddies and made our way to the Opera. Big Man no longer walked too fast. He held my hand the whole way. We were full and warm from wine, and we arrived at the Opera right on time. Our seats, which could have been anywhere at all since I had bought them online on a website that was all in German, ended up being in the front row of a balcony box from which we saw everything. Big Man complimented me on my planning abilities. As the first strains from the Marriage of Figaro began, I started crying quietly. I was overwhelmed by the joy of being alive.

After the Opera we went out for Viennese coffee and some of Vienna's famous Sacher Torte. I cried again over the beauty of this piece of perfect chocolate cake filled with jam. To make a perfect night even more perfect, as we started walking back to our hotel, it started to snow ever so lightly. I think the snow hid my third round of tears.

It is now no longer the holiday season. The Spences are back in America and back to work. We are back to reality. Now, instead of the joy of Christmas season, it is the bitterness of campaign season. This Presidential Campaign has been full of talk about Healthcare reform, an issue that means a lot to me. The debates and discussion in the news have brought a lot into focus for me.

I know all too well how lucky I am to be responding to Taxol. Even though I'm bald, I'm doing really, really well. I have no complaints today. I do realize that this drug might only work for 3, 4, 6, or 8 months. Is $7,000 a week too much to ask for for only 3 more months of life?

There have been some news reports lately that have made me feel about this big. Like the one I heard on NPR last week about how the "sickest 1% of patients" are responsible for the "lion's share" of healthcare spending. Recently, news about new and exciting cancer drugs often includes details about just how expensive those drugs are. It seems as though I have to justify the care I'm receiving.

When I heard an audience at a Presidential Debate cheer the prospect of letting a sick man die if he couldn't pay for coverage, I again felt this big. I work full time and can pay for my coverage, thank God. But what other difference is there between myself and that theoretical sick man?

Happy Couple in Prague
Thank you Taxol!

Several breast cancer drugs, most specifically the drug Avastin, have had their FDA approval revoked recently because they didn't improve patients' lifespans long enough in studies. Yet dozens of women appeared at the FDA hearings to share their stories of miraculous recoveries on these drugs. While I am not on Avastin, a similar FDA rejection of my previous drug TDM1 was also in the news this year.

I am struggling to reconcile my overwhelming feelings of joy and the incredible blessings of my past three months with the energy of the nation to which I returned home. Who gets to decide which is precious enough...three months or six months???

These past three months have been my best three months ever. I feel I am no longer a girl. I am a happily married woman. I am so thankful for how far I've come, and I am thankful for Taxol for giving me that chance. No matter how long this blissful time of shrinking lasts, I'm glad for it, and I would pay any amount of money to receive it.

Time is a blessing. I can never have enough time.

My Blog of Thanks Giving

2011-11-25T17:10:00.001-05:00

Happy Thanksgiving, readers!

I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.

Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.

This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.

I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?

I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.

One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.

October was a tough month for me.

But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it. Hope found me in the bathroom when I lost my hair.

The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.

Me in my wig the night after Big Man shaved my hair.
That's one good-looking wig & he's one good-looking hubby!

One morning, I woke up and I couldn't take the itching anymore. (Chemo kills your hair follicles so they itch and the hair shaving actually comes as a bit of a welcome relief.) I woke up Big Man. Without even a word of protest, even though it was only 7am on a Saturday morning, Big Man got up. He and I walked hand-in-hand to Walgreen's. We purchased a pair of clippers, I stuck my head into the sink, and my husband shaved off all my hair. He cried a bit, which made me cry. I thanked him profusely, which made him cry. But in the end, a moment I had dreaded actually gave me hope. I will cherish that memory forever. After seven years together, shaving my head in the bathroom sink was certainly our most intimate moment. We were a scared young couple looking ahead toward an uncertain future, but at least we were doing it together. He had my back. He would take care of me. "In sickness and in health" we had told each other when I still had hair and boobs. Big Man proved he meant those vows when he shaved my head last month, slowly, carefully, and whispering soft words of comfort when I cried.

I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!

But I can't keep the news to myself any longer. If I jinx myself, so be it!

Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....

When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.

Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.

I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled, I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.

Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.

Then, at my appointment on November 16th, my markers fell to 300!

Then, at this week's appointment, my marker fell to 234!

I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.

November has allowed me to hope.

Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"

Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.

At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?

I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.

I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.

The Importance of October

2011-10-07T15:19:00.005-04:00

October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.

This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.

It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.

There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?

As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.

Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.

Here we go again.

My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.

I am scared.

I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.

Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.

But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.

This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.

I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?

What to Expect When You're Recurring

2011-09-16T13:50:00.003-04:00

It seems these days all of my friends either have a new bundle of joy or are expecting a new baby. That's what happens. First comes a slew of weddings, and then the babies follow! In contrast, with my crazy cancer roller coaster, it's looking more and more like Daisy is the closest the Big Man and I will get to having a baby for the foreseeable future. A puppy that can go into her crate for 4 hours while I'm away at chemo is about all the responsibility I can take on right at this moment.

So...instead of the What to Expect When you're Expecting that all my friends now seem to own...I've decided to introduce to the world an alternative: What to Expect When You're Recurring: Tips from one metastatic cancer patient to another!

It's hard to believe, but I've now been on my latest Gemzar/Herceptin drug cocktail for almost 2 months. I've learned that it takes two full months to get into the swing of any new cancer journey. Most chemo drugs, for whatever mysterious reason, seem to be given in "cycles" that typically are 3 weeks in duration. I have now had 2 full cycles, so I am a bit more knowledgeable about this latest drug. In doing the math, this regimen is my 8th chemo cocktail. In 6 years, I've been on 15 different drugs by my count, all of which have been added, subtracted, tweaked, shaken and not stirred to create a special little cocktail that is just my own. It's been a whirlwind of changes and through it all I've learned a lot about how to deal with these cancer obstacles practically and with a little touch of grace. This latest cocktail has confirmed my previous observations, so allow me to share my hardearned tips and tricks with all of you here.

If you don't have cancer, I hope you never have to reference this list of tips. Alternatively, if someone you love is staring cancer in the face, or if you are dealing with this scary journey first hand, I hope my experience can shed some light on what happens after the doctor tells you "it's back." If any of you have any additional tips that I should add, please make good use of the comments section!

What to Expect When You're Recurring

1) Life Goes On:
In the immediate aftermath of a cancer recurrence, you are going to be a ball of emotions, and rightfully so! I believe you run the gamut: from fear to anger to self-doubt to worry about your loved ones, and finally, to acceptance. You will reach acceptance. And once you've reached acceptance, you will find that life really goes on. The dog still needs to go out each morning. The house gets dirty. Dinner needs to be made. Laundry needs doing. The kids have to get to school and soccer practice. Things break. You will find solace in these day to day activities, and you will find their constancy both helpful and eery.

I was reminded of this last month. I had gotten one infusion of Herceptin and Gemzar, and was gearing up for infusion number 2, when it came to my attention that our water heater was leaking. The water heater didn't get the memo that I really couldn't deal with a plumber right at this moment in time. I simply couldn't believe it. After 15 years and countless condo owners, our water heater chose this moment to start dripping. Luckily, it was only a drip. Nothing was exploding yet, so I put on my big girl pants and decided to deal with it immediately before the situation got any worse.

Well, the situation got worse. It turns out we have to have our whole second bedroom built-in closet ripped out in order to get the water heaters out of our back door. I have to enlist carpenters, painters, plumbers, and delivery men. I have taken phone calls from contractors from the chemo chair, and I've at times wanted to both laugh and cry and come clean to my plumber that I really can't deal with him right now because I have just had a recurrence! But I don't. I don't want to make him feel uncomfortable. So instead, I pick up the phone, I collect dozens of estimates, I navigate the politics of my condo association, and I get out my checkbook.

Stuff like this happens all the time. The week after my double mastectomy, a water main broke right outside of our building and threatened to flood our condo and suck my car right into the sink hole that I had inadvertently parked on. Electricity goes out. Holidays and long standing travel plans are disrupted by your cancer recurrence. Try not to cry. Try instead to find some solace in the rhythms of everyday life. Take out all your frustration from your diagnosis on your trash men who missed your weekly pick up. Make a To Do list while you're sitting in the chemo chair. After that initial onslaught of tears, the day to day stresses actually help.

2) Clear your Calendar for Two Months:
As I implied earlier, it takes a good two cycles of a drug, a full two months, to really know how you will feel and what your good days will be. You will have good days. But every week will now be a 3 or 4 day week instead of the usual 7. Or you might miss one week or two weeks entirely every month. Your "month" will now be two weeks long. You're going to have to get used to stuffing a month or a week's worth of activity in 3 or 4 days. Until you know what you can handle, clear the books. Pull the cancer card. Cancel everything. After month two, you'll find you are ready to start piling things back on. Time and time again I've wondered how long it will take to get used to a drug regimen. 8 regimens into this journey, I've finally found the magic number, 2 months.

This two month schedule is also a good rule of thumb for most surgeries that I've had, barring any major complications.

3) Accept Help
For those first 2 months, embrace help. You can rely on the kindness of strangers, or you can pay someone. Landscapers and cleaning ladies are your best friends. Most grocery stores have some kind of delivery service these days (www.peapod.com) and swallow your pride and have your dry cleaners pick up and drop off all the laundry. There is no sweeter feeling than coming home from chemo, opening the front door to the smell of pine sol, looking out the window at your freshly mowed lawn, and climbing into your newly laundered and folded pj's and taking a good 12 hour rest! Embrace the help!

4) Embrace Drugs
Every chemo cocktail comes with its own set of side effects. Sadly, the usual way to deal with these side effects is with more drugs. I've struggled to come to terms with the sick, twisted logic of taking drugs to combat the side effects of other drugs. It seems like a real catch 22 to me, especially since my poor liver has cancer in it and also has to digest all of these crazy cocktails, but I have finally come to realization that a life in pain or a life of nausea is no life at all. I live a much fuller life when I throw up my arms and embrace the drugs my doctor recommends.

So far, I love my Gemzar/Herceptin cocktail, but at first, before I embraced drugs, I didn't love it at all. I was running fevers. I had night sweats and chills. I had awful stomach pains and bloating. I wasn't eating. Now my doctors have added some steroids to the IV drip I get every week to combat the stomach pain and inflammation. I also take some prescription pills to combat the night sweats, and I pop Tylenols before, during, and after my infusions each week to keep the fevers from even developing. I feel like a total crackhead. I still feel sorry for my liver, but I'm not rolling around in pain every night. I'm able to get a good night's rest, which leaves me ready for each morning. I am living a full life on this chemo, and that to me is the definition of a chemo cocktail worth loving!

I have, however, drawn a line in the sand with this rule. I hate painkillers. I don't like the way they make me feel. Prescription painkillers scare me and leave me exhausted in bed and not feeling like my perky self. I try to combat pain with Tylenol. I've decided in the past that, if the chemo pain is bad enough to warrant prescription painkillers on a regular basis, I'm going to have to say no to that particular regimen. That is my personal limit. You are going to have to discover your personal limits through trial and error. Be open and honest with your doctor and nurses. No side effect is too small to ignore. Speak up, and chances are good that together your team can come up with a good plan for living a full and happy drugged up life.

5) Stop Embracing Help at Some Point
Eventually, you are going to find that changing out of the PJs and taking a trip to the store is a good thing. Having a pile of laundry and a needy child or dog is the only thing that's going to force you to get out of bed. Chemo makes you want to sleep. Your blood counts are going to be all over the place, and your body deals with that side effect by getting tired. By all means, give your body a rest, but it isn't healthy to live in bed either. So, by month 2, by the time you know your schedule, you should start cutting back on all the assistance a bit. That said, I still embrace the cleaning lady. Her help every other week allows me to focus on other tasks that I've always been meaning to get to. If she can vaccuum and dust, I can finally get around to cleaning out my fridge!

6) Don't Over Commit
Even after the 2 month window, you still need to listen to your body and stick to a strict sleeping/resting schedule. For me, I get Gemzar/Herceptin every Wednesday. I have timed the infusion for 5pm. The infusion department is open until 8pm everyday so I can get a full day of work in before heading to the doctor around 4. I'm home by 8pm. It is understood that Big Man is responsible for preparing dinner/ordering take out every Wednesday. I am asleep by 8:30. A full 12 hours is more than enough for me before I get back to work on Thursday morning.

That said, Thursdays I try to keep my schedule at work pretty light. Thursdays are an answer email, keep the lid on things kind of day. I try not to lead any major conference calls or meetings. I'm simply not in a good spot and probably wouldn't be sealing any major deals on Thursdays. Instead I try to close out projects Monday through Wednesday.

I've noticed I am ready to take on the world on Fridays, but I get pretty tired again by Friday evening. I think that might be my blood counts dropping or something, so I leave weekend plans for Saturdays.

You will find your own schedule. That's what the 2 month window is for, but make sure once you know your schedule that you stick to it. I have found it is better to underpromise and overdeliver with cancer. Otherwise, you will be letting people down. I hate having to cancel long standing plans. I hate dropping the ball. I have dropped too many balls in these past six years, so instead, I stick to my schedule.

7) Don't Bring Friends to Chemo
This rule is a tough one for many people to understand. Allow me to explain. At chemo, various people come in and out to check on you. You might end up chatting with your doctor about your menstrual cycle, menopause, constipation, nausea, any number of embarrassing side effects. Your doctor might want to do a physical exam that requires your friend leave the room. You might get sick to your stomach while stuck in your chemo chair and need a bucket. Long story short, your chemo visits are a down and dirty affair. Through trial and error, I have found it is best to limit visitors to your most intimate circle of friends and family. Don't have more than one visitor per appointment because, frankly, the doctor's clinic rooms are small and chairs at chemo are a precious commodity. If your doctor comes to speak with you and you have a posse of 10 standing around, it's just an awkward and graceless affair. It's best to keep the friends at bay and ask them to help in other ways. "Keeping you company" at chemo is simply not the best use of their time. Instead, I bring my to do list with me and start checking things off. Chemo is your chance to keep up with your emails. I have written many a thank you note for a gift while sitting in the chemo chair. Bring a good magazine, a good book, or a good movie. Don't bring a posse of good friends!

8) Enjoy Your Next Three Months!
Any doctor worth his salt is going to tell you that we can't know if a drug regimen is working unless you've given it time to work. When you first receive news of a recurrence and you go onto a new cocktail, you're going to immediately look for signs of effectiveness. Are your tumor markers going down? Are you still jaundiced? Is the pain improving? If you have a palpable lump, has it decreased in size?

These are all great questions to ask and your desire to know is understandable. I'm sorry to say, though, that you need to simply hurry up and wait. Give your body the time it needs to navigate this new drug. Give the drug the time it needs to work. In most cases, you won't receive any news or know if anything is working for 3 months, until your next set of scans. There are sometimes exceptions to this 3 month rule, but that's the general time frame.

This delay might stress you out, but I'm begging you to take advantage of this time. Once you know your new chemo routine, plan some trips. Take a look at your life, take a look at what in your life you want to improve or things on that bucket list you'd like to check off. Get started living. You can live a lot of life in 3 months.

Daisy and Me....enjoying our cocktail..
and enjoying our Next Three Months!

Big Man and I did this together after my most recent setback. I realized that, while most of my peers were having babies and going back to graduate school, I needed to set more attainable goals for my next chunk of free time. I couldn't get a law degree in 3 months, and I didn't want to start something and then have to stop it and disappoint myself if this Gemzar fails to work. So instead, I signed up for tennis lessons. I set a goal of 50 more good pages in my manuscript, rather than set a goal of finishing the whole thing, and I signed Daisy up for obedience classes. My goal is to get Daisy on board as a "therapy dog" to help sick kids in hospitals or people stuck in nursing homes. These are all short term goals that can easily be attained in the 3 months God has given me.

This last tip goes for all of you, dear Readers. What will you do with the next three months of your lives? Think long and hard. Make it a good goal, and see if you can't find a goal that you'll actually finish in three months!

So many of our lifelong goals are long term and focused on a point way in the future. Try to find a goal that can actually be started AND finished in the next three months! It feels really good to accomplish something, and we so often don't get that satisfaction in our busy, multi-tasking world!

A Huge Blow

2011-08-05T16:13:00.001-04:00

I have to ask for your forgiveness, kind readers. I admit, I have been hiding and I have been procrastinating. Both of these qualities are unusual for me. I am usually very forthright, open, and a take the bull by the horns kinda gal, but, please allow me to explain my silence.

A couple of months ago, I celebrated stable scan results and looked forward to a quiet summer. I promised all of you blog readers that I was going to celebrate my summer of stability by focusing on others and ending the Bridget Show.

The reason I have been hiding is because the Bridget Show has come to the forefront again- way sooner than expected.

I desperately want to be normal, quiet, and not the center of attention or the focus of pity, so I didn't want to share my news with you blog readers until I absolutely had to share it. I wanted to put off this post for as long as necessary. I wanted to put off the questions of "How are you doing" and "what can we do to help?" etc, etc for as long as possible. At the same time, I also couldn't in good conscience lie to all of you. I couldn't write about other people's stories, or cover topics like cancer and fertility or cancer and careers, and pretend my world was quiet and perfect, when in fact my whole world was falling apart. So I chose the middle ground. I didn't lie, but I didn't come clean. I chose silence.

Please accept my apology. Today, I'm coming clean.

The cancer has grown. The Tykerb/Xeloda regimen has failed.

It all started with my stable scan results. At the same time that the doctors look at my CT scan, they also take blood work and keep an eye on my "tumor markers." Tumor markers are like trails of trash that my cancer leaves behind in my bloodstream as it grows and travels. When my tumor markers decline, it is a sign that my therapy is working. When they increase, it is a signal that my treatment is failing. That said, tumor markers are unreliable, so we don't jump to 'all hands on deck' after just one bad blood test. Instead, like playing the stock market, we follow the tumor markers' trends and we make decisions based on trends after looking at weeks and weeks of data points.

So, the same day that my CT scan results showed stability, my blood work showed increased tumor markers. Because we focus on tumor marker trends, my doctors played down the blood work and focused instead on the stability seen on the scan. However, after we saw a second large jump in my tumor markers the next visit, the doctors started preparing me for bad news. After a third jump, the doctors said, let's be safe and scan you early.

After the second appointment, when concerns were first raised, I felt a knot in the pit of my stomach. My doctors had never before focused much on tumor markers. My subconscious was telling me that this was not good. I wanted to hide. I wanted so desperately for my life to be normal and wonderful and perfect. I wanted so badly to enjoy the blissful summer I had planned.

I couldn't bring myself to blog. Sharing the news made it real- I was admitting to something I couldn't yet admit to myself. Like I said before, I took the easy approach and I disappeared- from blogs, from Twitter, from Facebook, from email returning, even from some phone calls. I apologize, friends.

Instead of blogging or emailing with all of you, I threw myself into home and work. I cooked for Big Man like he was a family of 4. I made mango salsas and elaborate skewers of meat and fancy veggies. Like Izzy on Grey's Anatomy, I baked- cookies, and brownies, and cakes- oh my! I walked the dog 4 times a day for long walks through new neighborhoods. I stared at her perfect, cute little face. I stayed up late and stared at the Big Man while he was sleeping (creepy! but also romantic) and I imagined what our kids would look like. I didn't want to fall asleep each night. I stayed awake later and later. I didn't want to go to bed because I didn't want the party to end. Every day that passed was one day closer to the bad news that the butterflies in my stomach knew was coming.

I also threw myself into work. For those who don't know, I am a coach as well as a 5 time walker for the Susan G. Komen 3-Day for the Cure. A few months ago, I moved into a new position at the 3-Day- I no longer worked nationally with every event, I now am the chief cook and bottle washer here in Boston. That really is my title "Boston's chief cook and bottle washer!" I threw myself into the new job working weekends and nights, and loving it! The Boston 3-Day for the Cure was July 22-24th, otherwise known as the hottest weekend in 100 years or something. I relished the busy-ness and the heat and the challenge. I wasn't winning in my own cancer battle, but I sure as hell could work my tail off and save someone else. I also relished the fact that, at work, I knew what was expected of me. I could handle work. I could control work. There were SOPs and checklists and deadlines. There is no SOP for metastatic breast cancer. I couldn't control my tumor markers.

I loved hiding.

Me as 3-Day coach with my blogger buddy Dusty Showers-
Big Man, be afraid, be very afraid!

So this brings us to a couple weeks ago. On Sunday July 24th, I celebrated with the 1,800 walkers and 350 crew as they crossed the finish line of the 2011 Boston 3-Day. I hugged my survivor friends. I cried with them. I laughed with them. I took pleasure in hearing other people's stories instead of sharing mine. I looked fabulous. I felt fabulous. I was a success. Life was good.

The next day, on July 25th, life got tough. At 7am, I lay alone in the tunnel of a CT scanner, praying because my life depended on it.

This unexpected, early scan showed that in just 2 months my cancer had grown in both my liver and my lymphnodes. In my abdominal lymphnodes, the cancer used to be about 1mm. The cancer was now more than 2cm. In my liver, my tumor previously was 1cm. My liver tumor was now 2.6cm. In just two months, my tumor markers went from 40 to 120.

Allow me to explain those that these tumors, my cancer, is all still very small and very manageable. This is not a "get your affairs in order" situation. I don't want everyone to freak out or misread me. I still plan on celebrating my 30th birthday in two years and throwing the most fabulous Birthday Bash the world has ever seen, but there is also no doubt the cancer is growing. We need to take action and stop it.

There are two things that make me angry about this situation. First of all, the trials and tribulations of Tykerb and Xeloda were all for naught. That regimen never really worked for me. I was on them for only 4 months. I suffered with hives, painful and peeling feet and hands, and acne on my face that made young children run and hide. All of that was for nothing. That said, the Tykerb and Xeloda probably did slow down my cancer's growth. The cancer grew, but it took 4 months for us to notice anything. I guess I'll take that, but I'm not happy about it.

Secondly, I feel like we are getting down to the wire. I just keep taking hit, after hit, after hit, and its getting to me mentally. These past 2 years it seems as though nothing has worked! I've had some victories, but I have had more losses than victories. My "arsenal" of drugs has now dwindled to 4. There are 4 more standard therapies available to me if this cancer keeps growing. That does not make me happy. I need 84 years worth of drugs if I am to grow old with Big Man as I have planned. When I counted the remaining number of drugs with my doctor, I gulped and clutched Mommy's hand desperately. In the past I have felt scared, disappointed and worried, but I've never felt desperation before.

I am starting a new chemo called Gemzar. I am going to take it in combination with my BFF, the drug Herceptin. The big bummer is that Gemzar is given through IV over several hours...every week. No more fantastic trips to Paris or Milan for me. I might have to miss a few friends' weddings. Every single week I have to show up like a good little girl and get my drugs. Cancer will be an even more frequent intruder in m life. I will spend even more time at the hospital instead of out living like every other 28 year old. Unfair!

Gemzar causes flulike symptoms. After my first treatment a few days ago, I ran a fever, and had chills and muscle aches. It's pretty daunting to imagine suffering through a flu every single week for the foreseeable future.

My doctor says in most patients the flulike symptoms diminish over time. I won't run a fever or have chills, I'll just be achy. Let's hope that diminishing happens sooner rather than later. After all, I have a full plate. I have to take over the world and cure cancer, remember?

The realities of entering this next, scarier phase in my fight against breast cancer are particularly daunting. All of the most exciting and talked about supposed "cures," all of the hottest and latest drugs, well, I've taken them. They haven't worked. Now I am on to "standard therapy." I am hoping and praying that Gemzar gives me stability, but after 3 failed regimens in one year, I just don't know if I can say that I am kicking cancer's ass. Cancer seems to be kicking mine these days. On the internet I found a synopsis of the results of clinical trials of this Gemzar and Herceptin regimen, the median time to progression for patients (meaning the median amount of time that these drugs gave patients' the stability that I so desperately want) was 5 months. The median survival time for patients receiving this regimen....10 months. I want more than 10 months! I am not ready to die in this calendar year. I have to assume those statistics will not be mine, but they still are staring me in the face. They still haunt me every night as I try to fall asleep.

My doctor is my biggest fan. It makes me choke up just thinking about her. She's wonderful. She tells me she has seen some patients who were on this drug for several years. She's confident of my future and she scoffs when I mention that I am doubting my hope of a 30th birthday. She says the results of this regimen vary greatly by individual. She also reassured me because I'm in great shape and I'm so very young.

My favorite poster from this year's Boston 3-Day
This is going to become my mantra!

With her confidence in my back pocket, I am entering this new chapter with my Big Girl Pants on tight. She's right, I can handle this. She wouldn't give it to me if she didn't think it would help. So, even though I am scared and worried and disappointed, I have to put on my Big Girl Pants and focus on hope. I suppose that is what faith really is, believing in something when it seems impossible. True faith isn't believing in something when the chances of it happening are good. True faith is continuing to believe even if that seems crazy, especially when it seems crazy. I'm choosing to believe. I am going to continue to believe in my future. I will continue to believe that Big Man and I could one day have babies. I will continue to believe that we will grow old together. I will continue to believe in it, and I can't wait for that to happen!

Today though, I ask you for some favors. I ask you for prayers, but not pity, and I ask you for research dollars, passion, and activism, but not gifts or cards. We need to cure this and I can't do it alone. We need to cure this SOON.

Even though I hoped and prayed and hid from reality for the past two months, I now must admit: the Bridget Show continues. I just hope that this past year of my blogging has opened your eyes to the roller coaster that is Life With Breast Cancer. I hope that my blog has made you understand why the world needs more pink. I hope you realize that, contrary to popular opinion, this battle for a cure is far from over.

Every 69 seconds someone in the world dies from breast cancer.

That needs to end....now. I don't want to add my life to that statistic, but I can't help but wonder, when will my 69 seconds come around?

OPP....Other People's Problems

2011-06-07T18:38:00.001-04:00

It is hard to believe that we are already on our way into summer. I'm excited to share with all of you the news that my summer is shaping up to be my best summer in two years!

Why you may ask?

Well, as you all certainly know by now, my every happiness hinges on....

Scans!

Last week I received my latest scan results. These particular scan results were crucial as it was my first set of scans since starting the latest Tykerb/Xeloda regimen way back in January. And...

my cancer has shrunk!

As a refresher, back in January I got the worst Christmas present ever, the cancer equivalent of a bag full of coal. I was told that scans had shown new cancer in the lymph nodes in my abdomen. Well fast forward 6 months and those very same pesky spots in my abdominal lymph nodes were cut in half by my Tykerb/Xeloda!!

Gratuitous Big Man and Little Daisy Shot

Everyone raise a glass to Daisy's Mommy!

These past six months have been mentally tough because I've been struggling with the new drug side effects while also not even knowing if the drugs were working! Over the past few months, the blood work I would get regularly was showing conflicting news. One week the tumor markers in my blood work would go down, the next they would go back up, the following week one tumor marker would go down and another go up. Until scan time, I was really driving blind. These were difficult pills to swallow not knowing their efficacy! (pun intended)

Now that I know these drugs will work for me, I can more graciously and confidently endure any and all side effects. Bring it on! I can handle it with a smile!

But more importantly, with this fantastic news, I am set free. I am finally able to focus on what matters most in this world- other people. The Bridget Show has taken a hiatus.There are so many beautiful things happening to my friends and family: marriages, babies, houses, jobs. There are also so many tragedies that I'm hearing about. There is so much cancer in this world. Others need my attention now while I can spare it.

I am sick and tired of the Bridget Show. For six years now I've been hogging the spotlight. I've been taking away some of the joy from so many joyous occasions. My friends feel sometimes that they can't complain to me about the trials of their own lives since I have "The Big C" on my plate. In reality, I would give any amount of money to NOT be the center of attention and to lose myself in the stories of others.

These past few weeks have been glorious. I feel as though I've come out of hiding. For the first time in ages I am planning ahead. I am planning life. Things many of you might take for granted seem so brave and liberating for me, like the freedom to book a non-refundable flight to visit Mommy four months from now.

I'm calling friends in high and low places and making plans for visits. I am gossiping, offering advice, listening, and truly being able to listen. My mind is not elsewhere. I am not preoccupied with my own fears.

To that end, I have taken the big scary step of beginning that memoir I've always threatened. I have 50 pages now and I love where it's going. Writing this blog is so very different from taking all of you along on a journey through my past, encouraging the reader to feel what I feel, taste what I taste, see what I see. This blog skims the surface. I share news and thoughts with you. In my memoir, I want you to actually sit in the doctor's waiting room with me. It's different writing and it's difficult emotionally to write, but it is exhiliarating. I realize now I never could have gotten these words on the page, I never could have looked back at the pain of my many diagnoses if all of my energy was focused on the latest set of bad news. This tiny little scan, the words "stable" have set me free. I can't wait to reach my full potential!

To kick off my memoir writing, I enrolled in a memoir writing class at night after work once a week. That class has again opened my eyes to the joys of hearing other people's stories. The woman fighting brain tumors, families with dirty little secrets, thrilling travel-logues, every one of my classmates is more eloquent than the next and every one has a story to tell. Each week we share 10 or 20 pages of our work and we offer critique. We tell our colleagues to "dig deeper here", or "I love this character", "hurry up", "slow down" - it is a beautiful creative experience.

At this class, I have learned yet again the lifelong lesson that every one has a story. Every one of us has a burden that she must carry, and so many of us carry these burdens silently. We put on a wig. We take the cell phone call from our sick mother from a bathroom stall. We tell little white lies to our children. We come to work everyday when life at home is imploding.

I want to carry that knowledge with me everyday in every interaction, and I hope you will keep that in your minds as well. Give the bagger at the grocery store an extra smile, allow the car at the stop sign to turn in front of you, hold the door open, choose your words carefully in every interaction, don't let your hot head or busy schedule cause you to raise your voice or cut corners, because you never know what sort of news the person next to you received today.

I am so thrilled to finally have the wherewithal to listen. Over the years, cancer has turned my heart to stone. My mind and my heart have been slowly numbed over the years. It happened gradually. As cancer dealt me blow, after blow, after blow, I retreated further and further into my own brain and into my own close circle of family and friends. I had room for their feelings and needs, but couldn't quite open myself up to sharing in strangers' pain and stories. If I felt all of your pain while also dealing with my own tragedy, I wouldn't be able to go on. The cold hard reality of life would be too much to bear. These scans have thawed me out and freed me a bit from that prison of my own mind, my own fears and worries.

At my writing workshop, I've seen firsthand that the whole world has been built on sharing stories. The greatest stories of all time, from Hercules to Robin Hood, even all of Shakespeare's great works, were all passed down orally over generations. A story shared can create an overnight sensation in a community, or it can ruin someone in an instant.

This summer I will, of course, still share my journey when it is appropriate or necessary, but I'm done complaining about my side effects for the rest of this summer. This summer, these next few months in between scans are a gift. I want to take advantage of this time to turn my focus outward. I want to share other stories of survival.

I don't need to celebrate this scan with wine and an expensive dinner, or an extravagent purchase. I can celebrate this win in my own fight by focusing on and shining a light upon the plight of my friends and neighbors. After all:

"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. ~Albert Pike"

Call for Nominations

2011-05-12T09:03:00.000-04:00

I am finding it hard these days to put Miss Daisy down long enough to write a blog, but for a good and worthy cause, I can find the time to write! I am reaching out to you, my blogger community, today with a very special request that is close to my heart.

Some of you may know, many of you may not know, but in my free time I get a lot of joy from speaking to high school and college students about breast self awareness and my breast cancer journey. I never heard a story like mine before my diagnosis and if I had, I know I would have done things differently. This work, as well as my work with the Susan G. Komen 3-Day for the Cure, has gotten me some incredible recognition over the years, everything from days at Fenway Park to cute clothes and pink coffee mugs to some very humbling awards.

Daisy and her LIFE Hero

The one award and recognition that has meant the most has come from the incredible Val Skinner Foundation. In 2009, I was honored as a LIFE hero. LIFE stands for LPGA Pros in the Fight to Eradicate Breast Cancer. Every year the organization hosts a golf outing and luncheon where they raise money for the Val Skinner Foundation’s Young Women’s Initiative. This event was a memory I will cherish forever. The LPGA Pros don’t just lend their name, time, and money to this non-profit, these ladies truly give their hearts and souls to the fight. We cried together, we laughed together, we exchanged so many hugs, and I still keep in touch with this incredible group of committed individuals.

To make the event even more memorable, not only was I honored, but during the awards ceremony the organization makes a point of interviewing and honoring the LIFE Heroes’ friends, family, and caregivers. Big Man was interviewed, Mommy was interviewed. It was so touching to see my story and to hear my loved one’s thoughts on my journey and my strength. That wasn’t something I had ever heard before. The event is noted as the biggest single-day golf event fundraiser for breast cancer initiatives, and when I was honored in 2009 it raised $500,000 for breast cancer programs. Since its inception in 2000, LIFE has raised more than $7 million for the fight for against breast cancer!

The money that the Val Skinner Foundation raises is being used for a cause that is so close to my heart - fighting breast cancer and preventing breast cancer in young women. Held at Sebonack Golf Club in Southampton NY June 27th the LIFE Event benefits Susan G. Komen for the Cure^® and the Cancer Institute of New Jersey (CINJ). Val Skinner founded LIFE after the loss of her friend and fellow LPGA golfer, Heather Farr, who died of breast cancer in 1993 at the age of 28. The Val Skinner Foundation is the founding sponsor of Komen On the Go^™, a mobile breast health education initiative. Bright pink Komen On the Go^™vehicles teach Americans everywhere- at community festivals, public universities, and neighborhood centers - about breast health and empower participants to share information with friends and join the breast cancer movement. In its seven year history, Komen on the Go^™ has visited 597 sites with a total audience of 17.5 million people!

The Val Skinner Foundation also opened the LIFE Center in 2002 at the Cancer Institute of New Jersey (CINJ). Young women at risk who visit the LIFE Center at CINJ and its six satellite locations in New Jersey area hospitals are counseled on available medical options to manage their risk and are provided with a management plan tailored to their unique level of risk. In 2008 the LIFE Centers launched a program called BioCONECT, which stands for biology of cancer, on-line education, connecting teens. This science curriculum uses breast cancer as the context and is designed to be integrated into high school biology courses. Through hands-on experiments, role-plays, games and cooperative learning activities, the BioCONECT curriculum provides teachers with innovative methods to address state and national science education standards (improves science skills) while increasing breast cancer awareness.

No other group that I have encountered has ever been more focused on educating and empowering young people to take control of their health. Not a day goes by when I don’t wish I had been more empowered and fought for a mammogram as soon as I felt a lump. I get choked up and excited when I think about the work this event makes possible! What a beautiful tribute to Heather Farr! I can only hope to be half as honored if I should ever lose my battle!

Now, this is where all of you come in. Each year, the event honors LIFE Heroes, individuals who have demonstrated courage in the face of breast cancer and purpose in the fight against the disease. Do you know of any young woman who has shown inspirational bravery during her fight? Would you like to honor that special young breast cancer survivor with a special award? If so, I’d love your nominations! I want to share this inspirational day with one of my blog readers. Everyday I receive touching emails and comments from all of you. All of you have stories just as powerful as mine. Everyone of you has faced a battle. All of you are incredibly strong. I am humbled to know you, if only virtually. So please, consider nominating a loved one or even nominate yourself! To submit a nomination, send a one page letter (subject:LIFE Hero) to life4yw@aol.com telling us about the young woman and why she represents a LIFE Hero. Please submit your nominations by Thursday May 19^th.

For more information about the LIFE Event or Val Skinner Foundation call 866-882-LIFE or visit www.valskinnerfoundation.org. Please submit a nomination letter! I am so proud of all of you and I want to share your stories with the world and shout them from the roof tops. Together we can cure this!

Happy Mother's Day.....To Me!

2011-05-08T16:54:00.002-04:00

I am so thrilled to introduce to you, my blogger friends, the newest member of the Little Girl-Big Man Family, Daisy!

Daisy & Daddy watch the Celtics defeat the Miami Heat!

She's Perfect!

Daisy is a 12 week old Cavalier King Charles Spaniel and we are just so in love! The past few months have been difficult for me, and Big Man watched all of that first hand. He decided to finally cave and grant me my puppy wish as a way of inspiring me. It might not seem like I need inspiration, but sometimes I feel like I don't know who I am outside of cancer. This little bundle of joy reminded me that I am a wife, and now a "mommy". I have great friends, all of whom have been coming to visit the little one!

I had a very full and active life before cancer, and I need to make sure I remain that same person. I am getting so much joy from nesting and worrying about something other than my health, something as trivial as how long it's been since her last walk or whether to feed her 1/3 cup or 1/2 cup of food! Instead of pouring over cancer research websites, I've been brushing up on Dog Whisperer. I have a set of CT scans coming up next week, and I've barely thought about them. I'm too absorbed in my home life.

So thank you, Big Man, and Happy Mother's Day to me! I promise in front of all the blogsphere that I will never nag the Big Man for anything ever again. I have everything I could ever want! A beautiful husband, a beautiful pooch, a beautiful home, and a loving mom who happens to be my best friend!

Today is good. I hope you all are enjoying your special days. For the mothers who read this blog who also happen to be dealing with a cancer diagnosis...I hope that motherhood allows you to forget the cancer stuff at least for a moment, and focus on what is really important in life, which is to give love and to be loved.

This is not your fault

2011-03-25T13:50:00.004-04:00

I know I often put on a brave face here on this blog, but I'm going to be honest for a moment. This Xeloda and Tykerb drug combo is no joke, my friends. I am struggling these days with feeling old - much older than my 27 years. My Xeloda- Tykerb combo is doing some serious damage to my feet. There is nothing quite like literally hobbling around the house to make one feel like a 90 year-old.

Every girl will agree, a great pair of pumps can make even the most tired girl stand taller, look thinner, and feel beautiful. Sadly, I can't even get my aching, throbbing, red, peeling feet into a pair of flats let alone a pair of pumps! I've taken to watching E! news obsessively for hours. I stare enviously at the beautiful starlets in Christian Louboutins on the red carpet. You never see Angelina Jolie hobbling, or wincing in pain, or even stumbling in her heels. I want to throw my slippers at the tv when the latest hot young thing from Hollywood says "Oh yes, I'm wearing Dior and Jimmy Choo!" You know what? I'm wearing Target Fuzzy Socks, thank you very much.

I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.

The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".

For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?

From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.

This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.

I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.

The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"

Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.

I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."

I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.

Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.

My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.

That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"

I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.

We've come a long way, baby! That doesn't sound anything at all like what I'm doing!

My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.

There is no single moment in time that we can point to and say, "That right there, that did it."

So let that question go. Let the guilt go.

You did not cause your cancer.

The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.

Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.

By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.

When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"

It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.

The same is true with yoga. About four years ago I was in the best shape of my life. I discovered yoga and I loved it - still do. I was training for two 3-Day events, and when I wasn't walking I was at yoga class. I felt strong and I felt for sure I would beat this disease because I was "in the best shape of my life." And then one day, I got a phone call. They saw a new spot.

I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.

I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?

I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?

Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;

That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr

An Ode to My Mother

2011-03-03T20:57:00.002-05:00

I have been MIA for the past few weeks, recovering. I had my swap surgery February 9th and started my Xeloda pills last week. My new "Girls" are looking pretty good, but it's hard to get excited about them when they are black and blue. Luckily, the new Victoria's Secret catalog came in the mail the very same day as my surgery. I treated myself to three new bikinis as motivation for falling in love with this new body.

On the chemo front of things, the Xeloda treatment is going well. I'm pleasantly surprised. I haven't had to call my doctor in a panic or get rushed to the hospital. So far so good, although I guess my previous medical dramas have set the bar kind of low!

I am definitely fatigued, but I can learn to fit fatigue into my lifestyle. There's nothing wrong with an 8pm bedtime; I've got nothing to prove. I also need to learn to live with a constant stomach flu. Most women my age have to remember to bring a change of shoes in their purse (heels for the office or the bar, flats or flip flops for getting around town) or they have a purse stuffed with technology: a work blackberry, a personal cell phone, a digital camera, an IPod, or the young mom carries a diaper bag stuffed with toys, snacks, pacifiers, wipes, and, of course, diapers. Not me. I can't leave home without making sure my Immodium is in my purse. I root through my purse at dinner to pull out, not lipstick or a mint, but those Xeloda pills that must be taken with a meal. I am not turning into my mother, like some women my age. I skipped that stage completely. I'm turning into my grandmother!

That said, my face may be suffering from the Xeloda even more than my tummy. The hives have retreated everywhere but from my face. I have the face of a 14 year old now. This is not my face. I turned to the Big Man the other day as we were brushing our teeth and pointed in the mirror saying, "Who the Hell is that woman in the mirror? That is not the woman you married!" He, of course, told me I was beautiful, but later that evening he advised me against ordering dessert because the chocolate might aggravate my "rash." Don't be fooled, blog friends, the Big Man is not perfect!

I suppose this is typical of my cancer journey. I check off one item on the "Cancer To- Do List" and another To Do pops right up. Just when I had finally gotten over the major self-esteem issue that was learning to love my post-mastectomy chest, I now have to learn to love my chemo-induced acne and nausea.

Like the Victoria's Secret shopping spree, I am now pondering a trip to a make-up artist. Do any of you Boston-area readers have a recommendation for where to go? I get nervous about the stands in the mall. I'm not looking to get "hot" for a night out at da club. I just want to look fresh faced for a trip to, I dunno, the grocery store.

So, I apologize for my absence, but I've been a little under the weather and also I haven't been too full of self-confidence. Blogging requires a bit of chutzpah. I'm letting it all hang out here on this website. I have to be in the right frame of mind to blog. I might wake up ready to take on the world, but when I look in the mirror these days, that attitude quickly disappears as my cancer-acne stares back at me.

Which brings me to my topic for today. I want to take this opportunity to praise my Mommy. She is truly the only person in the world who can help me at a low self-esteem moment like this one. My swap surgery was surgery number 8. In 6 years, I've had 8 surgeries. Mom has dropped everything and run to my aide for every one. After spending the last 3 weeks together, I've realized that I always proclaim my love for the Big Man and I really have barely mentioned the other major player in my life.

Oh, Mommy, How do I love thee? Let me count the ways:

Mommy and Bridge on my wedding day
Don't we look alike?

1) Mom is my biggest cheerleader. When I am feeling unattractive, she knows just the right thing to say. When I lift my shirt up above my head in the living room and say, "Mom, does the left one look slightly bigger than the right?" She takes my self-doubt seriously. She never tells me I'm being silly. She takes it seriously and she tells the truth! Mommy looks, critically, at both new breasts. She might even get out a measuring tape to take a closer, more scientific look. She asks me to turn to my left and turn to my right. Then she kisses me on the head and says, "They're perfect! I love them!"

2) She talks
and talks
and talks
and talks

When your life is a living soap opera, the best medicine is to forget about all the really huge life-changing stuff that's going on. People and US Weekly come in handy, but really the best medicine is a good, long conversation with mom. My mother will talk about anything. We talk about interior decorating and real estate, politics, and, of course, gossip. My mother is like an elephant, she never forgets a face, a name, an occupation and marital status, or a child's name, occupation, and marital status. My mom loves to read the high school sports section of her local paper religiously. Why? She hasn't had a child in high school in at least 10 years. She reads the sports page because her friends and her neighbors have kids in high school. She likes to be able to personally congratulate them on their child's accomplishments when she runs into them in the grocery store.

You get the picture. Next to going out to dinner with the Big Man, talking to my mother is my favorite activity.

3) Last, but certainly not least, she does whatever needs to be done, no questions asked and with no expectation of repayment. Five years ago, I was bald as a baby's butt and just one week post-radiation. I wanted to move back to Boston to be closer to my boyfriend of one year. My mother not only allowed me to move, she moved me. I couldn't lift a thing. I was just a few months post-surgery. She drove furniture cross-country and then moved it all in for me. No questions asked.

Since that move, she has come up to Boston every three months to sit with me and hold my hand as I received my three-month scan results. She books flights. She books hotels. She takes me out to dinner. She takes me shopping and out for manicures to take my mind off my impending doom. She goes grocery shopping and cooks dinners that are frozen and ready to use after she leaves. All in all, she keeps my life running.

When I had my double mastectomy, Mommy moved to Boston for more than a month. She uprooted her life. She left bills and friends and the comfort of her own home. She found a long-term apartment down the street from my house and was at my disposal before I woke each morning until I fell asleep at night. She found a lovely B&B owned by an Irish couple that is three doors from my home that has become her second home. (if you ever want to visit Boston, I highly recommend it! www.aisling-bostonbb.com) I owe my very life and all of my cancer fighting success so far to my mother's constant help. I couldn't have faced all that I have faced without her help.

Two Hot Girls on a Hot Summer Night

My mother is the ultimate portrait of a lady: graceful, selfless, smart, funny. She knows how to handle every situtation in exactly the right way, from talking to doctors to making career choices, from gardening to cooking & cleaning, from buying a house to renovating and decorating it. Mom has never steered me wrong and she is such a source of help, support and advice for me and for my three brothers. In fact, now that I mention it, how in the hell did she manage to raise four kids who were all a year and a half apart in age? Many women are exhausted by two, imagine raising four kids all under the age of five!

When I was growing up, my mother and I could barely speak without arguing; I believe it's because we were so much alike. We knew how to push each other's buttons and we couldn't help ourselves! I hate cancer, but I will forever be, on some level, very thankful for this nasty turn my life has taken. Cancer brought Mommy and me closer than we ever would have been otherwise. My mother is the port in this storm. This life would be unbearable and the situation would be untenable without her constant assistance. I can sleep soundly at night knowing that Mommy's got my back.

Mommy can never be repaid. Saying "thank you" will never be thanks enough. Helping her move, taking her to dinner, remembering her birthday or Mother's Day, nothing I do could ever be enough repayment. This blog entry isn't enough. This ode could be a book.

The only thing I could possible do is take this opportunity to reassure her, to promise her, publicly: Mom, I promise never to put you into a retirement home. In fact, I think I owe you and all your best friends a very comfortable old age!

I'll close with my favorite version of a "Thanks, Mom" courtesy of Poet Laureate Billy Collins

Cancer-Meltdown

2011-02-01T00:33:00.011-05:00

So the Spence household has had a crazy couple of weeks, but the last three or four days have felt really normal! Last we spoke, I was digesting some awful, awful news and facing some new chemo treatments. First off, thank you so much for the incredible outpouring of support everyone shared via email and comments. To hear so many of you who have had Xeloda experience, it was just what the Big Man and I needed to hear. Entering this new chapter was so much less scary. Thank you!

With all of my readers and supporters by my side, I wasn't afraid of a single thing... until....

Saturday January 15th, I was one week into my new Tykerb regimen. The Good Doctor started me on Tykerb alone because I have my Swap Surgery scheduled in February. My swap surgery, for my non-cancer friends, is my final reconstructive surgery. My plastic surgeon opens up my old mastectomy scars, removes my tissue expanders, and puts in my permanent implants. While it may seem crazy to have a surgery in the midst of new chemo, the expanders are uncomfortable and I have been asking to have them removed for about five months now. Nothing is standing in between me and Swap Surgery. Come hell or high water, these things are coming out February 9th! The doctors wanted to hold off on giving me the full dose of my treatment until about a week after surgery because we don't want to compromise the ol' immune system.

So the point is, on Saturday January 15th, I am not afraid or worried at all. I have my biggest pair of Big Girl Pants on and I am being a brave little girl. Life is good. For now, I only have to take 5 pills a day as opposed to 11. The 5 I have to take aren't even chemo, they are "targetted therapy." Thousands of women have handled this very same regimen with no problem. I have the support of my family, friends, and blogger buddies. This whole Stage IV cancer thing is a bummer, but really its a cake walk. I was getting ready to blog about just how easy this whole new cancer chapter was shaping up to be.

It was Saturday night and I was in the bathroom preparing for a nice dinner out with the hubby and my in-laws. Earlier that week was when I first noticed a little breakout on my face. Not attractive. I looked like a prime candidate for one of those Proactive commercials.

By Friday, the breakout had extended to my fake chest. Not attractive, but still not cause for alarm. I had maybe 15 small zits. Nothing that a heavy dose of foundation and a turtleneck couldn't remedy.

But that Saturday evening, January 15th, the rash started growing a rash of it's very own. I had hives on my back. I had hives on my bottom. I had hives on my scalp.

I itched. And when I itched my itch, the itch hurt. When the itch hurt I put on this soothing ointment my doctor prescribed. But to put on the ointment, I had to look in the mirror, and every time I looked in the mirror, I didn't see the allergic reaction for what it was. Instead, I saw Cancer staring me right in the face. I saw Cancer all over me like "stink on a skunk," as my grandmother would say.

My mind was going crazy focusing on these hives and on this cancer. For once I felt truly "stricken" with cancer.

I had it in my mind that the only thing that would make the itching stop was a nice, warm bath. I had visions of Mommy drawing an oatmeal bath when my baby brother and I both had chicken pox the same week. The vision of a homemade remedy empowered me. If I could just draw a bath, this whole rash situation would clear right up. Oatmeal would easily conquer a powerful chemo drug! I had my oatmeal in hand and was ready to take a long bath before my in-laws arrived. The Oatmeal would fix everything just in time for their arrival. I had two hours. Plenty of time.

I had visions of me opening the door wearing my best cashmere turtleneck sweater and a smile. I would hide the rash on my face with multiple layers of perfectly applied foundation. I would hand them a nice glass of Cabernet. I would have white wine and beer chilled. A tray of fine cheese would be waiting on the coffee table. Candles would be burning. Jazz music would be playing in the background. Our Christmas decorations were still up. "Please, come in! Yes, mother-in-law, see how well your son chose? I am taking care of him. Cancer? What do you mean cancer? Cancer hasn't got me down! No way, no how. I'm taking care of him ya see? He isn't a caregiver! Who needs a caregiver?" I was going to be like a duck when I opened the door for the in-laws, calm on top but paddling like the dickens underneath.

And then, I turned on the bath and found to my dismay....

We were out of hot water.

No big deal, perhaps a slightly chilly bath would be just fine for my hives.

No, an ice cold bath actually makes the hives worse. It turned on every nerve in my entire body.

That was when the crazy came out.

In an attempt to "help" in my time of need, the Big Man had apparently thrown in a load of laundry and had also loaded the dishwasher inadvertently draining our condo of hot water. In a normal state, I would thank the Big Man for helping me clean up before his parents' arrival. I should have just shrugged my shoulders at the inconvenience of not being able to prep appropriately for their arrival, but I was not in a normal state of mind. The hives were talking here.

In one of those blind rages that happen when you are frustrated and need to lash out, you can only lash out at the people you love the most because those are the people who won't ever leave you. I flew into a rage and cursed the Big Man and his helpfulness.

How dare he do the laundry!
How thoughtless of him to reload the dishwasher!
Doesn't he know that I run the show around here?
Doesn't he know I need a tub full of warm water!
Now it will be an hour before the water's warm again, and his parents are coming.
Your parents are coming!
What am I going to do?
IT ITCHES!

The wheels came off. I cried. I screamed. I threw some pillows around. I may have thrown other things, I can't remember.

My in-laws did come, God love them, in the middle of this whole fiasco. I was running around in my robe (the only piece of clothing that didn't itch) and screaming bloody murder about:

our stupid water heater needs to be replaced. Maybe tonight. You think a plumber can come tonight?
Why on earth did we buy this hole in the wall condo in the first place? Huh?
YOU, Big Man, YOU were the one who first came to the stupid Open House.
YOU were the one who found this condo and it's stupid broken water heater.
We never should have bought this place.
What a waste!
Nice job you house-buying, laundry and dish-cleaning, worthless excuse for a husband!
YOU!

It was a Kelly Bensimon in the Virgin Islands kind of a night!

Needless to say, I looked not at all like a duck, I was nowhere close to looking like Martha Stewart. Jazz was not playing in the background. Cheese was not out on the coffee table. Frankly, if I had greeted the in-laws at the door with a glass of wine, it would have made me look even worse! With a glass of wine in my hand, they could have confused my hive-induced rage with the ravings of a drunk!

I looked not at all like a duck. I looked not at all like Martha Stewart. I looked instead like one of those Real Housewives. The ones who scream nonsense obscenenities at anything that moves for no real clear reason.

It was an ugly day in the Spence household, and I'm not talking about the zits on my face.

It was a good thing the in-laws showed up when they did. Even though I wanted to crawl into the hardwood floor and die of embarrassment right then and there, their arrival calmed me down long enough to catch my breath and allowed the Big Family to actually talk through the situation in a somewhat civilized manner.

Big Man suggested I call the doctor to see if we couldn't stop taking the Tykerb and get some stronger treatment for the hives. I refused. No way in hell was I going to call my doctor! What a crazy idea! It was a Saturday afternoon and Dr. P is a married woman with three little girls at home. How could the Big Man not realize this? I monopolize her time enough during the week. No way was I interrupting what was surely a beautiful Saturday with the family. I was going to wait this out until 9am on Monday!

I was being such a typical woman, or maybe I was just being exactly like my mother? My mother never wants to bother anyone. It is one of her most admirable, but also most infuriating qualities. Why are we so reluctant to ask for help? Are we confusing this trait with actual strength? In this case, my "strength" was more like stupidity.

Big Man ended up paging the doctor. He ripped the phone out of my shaking, hive covered hands and paged her.

Turns out, Dr. P was at the hospital doing rounds anyway. She said it was a pleasure to hear from me because she was wondering how I had been doing on the new treatment. When she heard about the hives arrival, she was mad I hadn't called sooner because apparently they "get worse before they get better." I was in for a long week. She told me to stop the Tykerb immediately. She faxed a strong antibiotic order to my pharmacy. She told me not to take a bath, I would only make the hives worse. So much for my oatmeal bath that had started this whole rampage.

To say I had a tail between my hive covered legs is an understatement.

Big Man had never been prouder of himself! Big Man was right, I was wrong. You heard it here first. I'm saying it publicly. He can save this blog post and refer to it forty years from now if the Real Housewives-style crazy ever makes another appearance in his house.

Two weeks worth of antibiotics later, the antibiotics are working wonders. I can take the Tykerb now and I don't break out anymore. I am feeling much more confident about this treatment plan.

More importantly,my face is my own again. I am no longer ashamed to leave the house, although I'm still wearing cashmere turtlenecks (but only because it's winter in Boston.) I no longer think of cancer every time I catch a glimpse of my reflection.

The wheels are back on. The train that is Bridget Kicking Cancer Butt shall continue

Although, I will never live down the in-law embarrassment and I promise my in-laws a more civilized visit next time (and every time thereafter).

Last night was our typical Sunday dinner of roast chicken and "60 Minutes," Big Man poured himself a glass of wine and smiled at me as I was sitting down to the dinner table. He said, "You look pretty. You look like yourself. We're so lucky. I'm so lucky. I love you, Little"

Wow, what a difference a week makes!

And even bigger wow:
Wow, I'm a lucky woman!

Please, kind reader, tell me: Has anyone else had a Cancer-meltdown? I hope I'm not the only person who has allowed Cancer to make her a little ugly to the ones she loves, if only for a moment?

Scan Results

2011-01-09T15:35:00.010-05:00

I knew something was wrong when my doctor came in and noticed my haircut. She was thrilled with the cut, but seemed uncomfortable gushing. She wanted to set a tone for the meeting and my smiling face and desire to be young, happy, and looking forward to a new year was something she was about to crush.

"We have good news and bad news."

My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.

My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.

The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.

This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.

I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.

My doctor paused to let this news sink in before weighing in with her opinion.

"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"

I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.

But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?

Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?

Just like with a bad breakup I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.

And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"

Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda.

In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.

My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.

Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.

How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.

If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.

We have more dancing in the kitchen to do!

Regardless of cancer's intentions, I am adamant that I will continue to live the life I have made for myself. I will witness my best friend walking down the aisle. I will visit the beach with Mamma and Company this summer. I will write a book. Big Man and I are season ticket holders to our local theater and I am seeing every single show and having a pre-theater dinner to boot, even if I do feel a little 'funny.' Big Man and I want to take a trip to Wimbledon some summer soon, he's a tennis player whose never been to London, one of my favorite cities in the world that I can't wait to share with the man I love.

Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.

As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."

I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.

Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.

This cancer might scare me, but I am going to stand my ground.

The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.

I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.

God gave me the Big Man

My strength and fortitude, my gift of gab. Big Man's ability to make me laugh when I feel instead like crying, Big Man's kind eyes and even kinder heart. Those are the gifts we symbolically received at our baptisms. Those very qualities that get us through cancer and help us to actually grow with it. We don't remember baptism, but our souls remember.

God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.

So, here we go, carrying on!

Here's To New Beginnings

2011-01-02T19:17:00.000-05:00

Happy New Year, kind readers!

I hope all of you are returning from vacations well rested and ready for 2011. I spent the last two weeks with the Big Man's Family. I completed several good books, enjoyed time by the fire, and kissed the Big Man at midnight.

And yet, it didn't feel like the holidays.

This was my first Christmas away from my family. While the Big Man and I dated, we managed to share Christmas and New Years. The Big Man's aunts and uncles live about an hour away from my family, so I managed to make appearances while still getting a good fix of my own family and enjoying my own childhood traditions. Now that we are married, we are learning to split holidays.

Christmas 2010 was wonderful in that I fully ensconced myself in the Big Man and his traditions. I learned so much about my husband around Aunt M and Uncle E's Christmas Tree.

In my family, we open one gift on Christmas Eve and the rest on Christmas morning. Also in my family, perhaps because we are such a huge Catholic family and each family consists of three, four, or even five children, we really don't exchange gifts with aunts and uncles and cousins. It would get enormous. We do only the immediate family gift exchange.

In contrast, in the Big Man family everyone is recognized with something thoughtful and small, which is really lovely, and makes the gift giving long and drawn out and so sweet. Also, in the Big Man family, all gifts are exchanged on Christmas Eve. There is something wonderful about this tradition.
I find something hopelessly romantic about opening gifts on Christmas Eve in front of a roaring fire, and Christmas Day was spent in simple conversation and a large meal, which was just the relaxation I needed after some busy months at work.

But, while I enjoyed the Big Man Christmas of 2010, this Christmas without my family made me feel like I was stranded on that "Island of Misfit Toys" from Rudolph the Red Nose Reindeer.

I was craving my childhood. I was missing my traditions. I vividly remember the excitement of all four of us waiting on the stairs on Christmas morning as my mother took a picture of all the kids. Mom always insisted on taking a picture every Christmas morning. We were prohibited from venturing downstairs into the toy-laden living room until "The Picture" was taken and until my Dad got his mug of iced tea (neither mom nor dad drank coffee, just iced tea). Dad was painfully slow, wrapping himself in his flannel LL Bean robe and slippers. Sometimes he even made us wait to go downstairs while he took a shower and shaved! I don't know why we didn't dare disobey. We had power in numbers. Four should have easily trumped two. But year after year, even when we were all in college or even graduated college, we all would wake up, stay in our pajamas an pile, in the same age-appropriate order, onto the oriental-carpeted winding staircase and smile for mom's camera.

The digital age actually slowed down the present-opening moment, rather than expediting the process. With a digital camera, Mom could see how miserable her picture was. She could see yawning, closed eyes, particularly bad bedhead. She kept insisting on a second, third or fourth take. And yet, that wait on the stairs was the best emotion of the holiday. More than the elation of the gift-opening and gift-giving, that moment of anticipation was the best part of Christmas morning.

At the same time as my homesickness, holiday 2010 I also had, for the very first time, a so, so very deep desire for my own children. I felt my biological clock ticking for the first time. I felt like I had been hit in the gut as I looked at Big Man holding his newest baby cousin, just seven months old. He was holding the child like a sack of potatoes. He looked petrified and thrilled all at the same time. He had a blissful look on his face and was laughing with his parents, who I could also see were watching this scene with their own desire for a first grandchild. I watched Big Man enjoying his Christmas traditions, I missed my own Christmas traditions, and I wanted deeply to create Christmas traditions of our own for our own little ones. I wanted to see the joys of Santa and Christmas and the first big blizzard of the season through the eyes of our children.

I felt this Christmas like I am stranded between child and adult; stranded on the Island of Misfit Toys.

I don't yet feel fully comfortable in the adult world. Even though I have experienced so much that should make me an adult, even though I am an almost-thirty married woman. Perhaps because my world is a scary one, I still often feel like a child. I deeply and often need my mother and I mourn the loss of my childhood.

The name of this blog, "My Big Girl Pants," actually came out of this feeling. I feel like a child fighting a very adult fight. Whenever I would embark on a scary cancer chapter- be it surgery, chemo, or radiation, scans, results, and recurrences- my mom would hold my hand, stroke my hair, rub my back. I would say to her, "Mom, I can't do it. I don't want to go. I don't want to hurt. I don't want to do this anymore. Why can't this be over?" and she would tell me, "Bridget, you've got to be a big girl again today. You've been through so much, but you've always been my brave one. Did you put on your big girl pants this morning?" We would giggle. Mom would reassure me that she knew I could handle it. At the same time as enjoying the familiar feel of my mother's love, support, and reassurances, I also put on a brave face, planted my feet, stared death in the face, and said, "Bring It."

I am not a fully independent, married woman. A normal, independent, grown woman would look at her husband and say, "Let's make a baby!" The "woman" that I am has been told by her doctors, and realizes herself, that she needs to wait until she has two years of quiet. I need two years recurrence free to have a child or to consider adoption. Two years may seem like a flash in the pan, but I have not had, in my six years of fighting this disease, two straight years without a recurrence. If you ask me, two years is a goal of Everest proportions.

I feel like my life is not totally my own. It might also be exacerbated by the fact that I had scans on December 29th and get the results on January 5th. I'm used to scan-time, but its just too close to the holidays, the timing is so symbolic. I feel powerless to run my own life sometimes.

And so, this Christmas and New Year, instead of feeling content and full of familial joy and anticipation for the future, I mourned the loss of my childhood and I felt like I was living in a no-man's land. Both young and old, both healthy and sick, excited for the future and dubious of its possibilities.

But through all of this self-doubt, another feeling, a very powerful feeling peeped through. I was still very much in love.When Big Man and I returned to our hotel room from Aunt M and Uncle E's, I couldn't help but be swept up in his warmth and joy and hopes for the future. We stayed up way too late talking about our plans for babies and houses and Christmas trees. We talked about exotic warm weather vacations far away from the threat of a Nor'easters. We talked about visions of me in an apron holding a beautiful roast turkey hosting our very own holiday rather than packing up and sitting in the airport. When I look in his eyes, I see the future and I feel so sure of all of it.

As Christmas wound down, I realized I needed, for Big Man's sake, to face the New Year with his same anticipation and hope.

How could I turn my fears upside down? How could I again find the power to face my fear, plant my feet and say, "Bring It!"? I needed confidence. I was far away from my mom and I needed the confidence that she so often brings me.

I lost my hair six years ago while in my first round of chemo. That dreaded pink chemo cocktail took every last whisp of hair and also took my eyelashes and eyebrows. The hair grew back and I was thrilled to find that the short 'do suited me. I am a small person and my tiny little head looked good with short hair. The short "pixie" cut actually brought out my large blue eyes. People commented. My proudest cancer moment came in the airport after picking up the Big Man who was visiting for the weekend when a woman at the baggage claim said she loved my hair and asked for my hairdresser's name. I didn't know what to say. I didn't have a hairdresser. I hadn't had a hairdresser for the past six months of baldness. I gave her the name of my wig-lady.

For the past five years, even though short hair suits me, I have kept my hair long. I have never, ever considered cutting it any shorter than my chin. That would bring back too many memories of baldness. That would bring back that painful memory of sitting in the back room of a salon watching my shocked, pale, tired face in the mirror as a strange woman shaved my head.

So, to celebrate 2011, I stared my fears and memories in the face and I cut my hair. My hair that proudly fell to my mid-chest, the hair that brushed up against my fake breasts. My hair that had some very hip Kim Kardashian like bangs. That hair that I spent hours blow drying, straightening and hairspraying. I cut it. I cut it all.

New Year's Eve 2011

I feel like an adult, a grown-up woman. I love my hair. I can air dry it and then put in some product. I don't look like a cancer patient as I had feared. I look like a hip, newly married woman who is choosing not to have kids yet because she's busy taking over the world.

So that's how I'm starting 2011. I'm starting fresh. Even though I am scared to death because I had scans on December 29th and get the results on January 5th, even though I feel like cancer is keeping me from living the life I want sometimes, I am looking forward to the future.

I can't wait for 2011! I hope that all of you feel the same.

Here's a toast to new hair and to new beginnings!

The Dreaded D-Word

2010-12-07T16:03:00.010-05:00

For those of you not receiving Google alerts for all news cancer, as I am, you may or may not have heard that Elizabeth Edwards has stopped treatment for her metastatic breast cancer and is preparing to die. Mrs. Edwards is a beacon of hope in the metastatic breast cancer world, so this news will certainly come as a huge blow to my metastatic friends. Losing Mrs. Edwards brings to light the one thing which we would all love to forget: we're dying here. We are living fully, but we're living while dying. This breast cancer can kill us.

I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."

Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.

With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.

I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.

I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.

My Dad with all four kids. At the beach, celebrating my second birthday.
I'm the half naked child with the amazing bowl cut
August 1985, Ocean City, Maryland

I know all too well the huge hole that is ripped into the very fabric of your being when you lose someone. I know all too well the pain that will never get better. Losing a wife, losing a husband, losing a parent, a sibling, losing a child, that pain never goes away. Every day you think about it, but every day you learn to live with it. You don't move on, you just continue moving. Life goes on, you must go on, but you must go on with this huge sadness. You learn to live, but you are never, ever the same. I am so incredibly sad that my Big Man might have to carry that burden one day. I want to carry that instead. I want him to go first. I love him so much, I don't want him to experience a single moment of pain in his entire life. I want to take his pain away.

I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.

But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.

If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.

I was saddened as I read the news stories about Elizabeth Edwards. A source says she has a matter of weeks, not months. I am a firm believer in, the earlier the better. I would like to be given months of notice. Give me as much time as possible with my family to prepare for this. I don't want my death to be all about me in a hospital bed. I want to have a few final walks hand-in-hand with the Big Man to a coffee shop. I want to sit in the sun on a beach. I want to ride rollercoasters and bumper cars. I want to play epic board games with all of my brothers and my sister-in-laws late into the night. I want wine and cheese and hugs and kisses with my best friends. I want to watch a sunrise. I want to have a last amazing dinner out- a real last meal. Not a last meal in a hospital bed, but a real last meal at a fancy restaurant in a beautiful dress that takes hours and is multiple courses long. I want to have dessert. I want to have everything on the menu that looks good! I want to order that really expensive bottle of wine.

My Dad in his element:
On Vacation with a cup of coffee and a paper

I didn't have those final conversations with my dad. I didn't have the chance to ask him some questions. He didn't have the time to tell me things. I didn't give him hugs and kisses knowing it would be one of the last times I could have that. I want that for my loved ones. That chance.

I realize I am doing all of this now. I am already living every day like its my last, but there is something sadly beautiful about having these moments knowing that it is really and truly the last moment. I want that knowledge. Even though I'm living with cancer now, there is always hope on some level. There is always disbelief. That won't be me. I am not Elizabeth Edwards. Until you have The Conversation with your doctor, it doesn't become real. I want the reality of that for a couple of months before the actual end so I can have really good conversations and memories.

I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.

I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.

Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?

Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.

And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.

But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?

I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.

And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.

My Blog of Thanks Giving

2010-11-24T15:26:00.000-05:00

I am in the hospital today. I am hooked up to an IV right now getting an infusion of my TDM1. I've been here for 3 hours, but I am hoping I can wrap it up within the hour so I don't have to rush to the airport. That's right, I am truly the greatest multi-tasker in America. I am writing a blog post, while getting my chemo, before heading to the airport for Thanksgiving. Take that Martha Stewart!

After seven months, I now have this TDM1 down to a science. I can set my watch to the moment the side effects kick in. I usually can steal about two hours post-infusion. Once I hit 2 hours, my eyes start to feel heavy. My head hurts. Every little movement takes a little more effort. I'll need a bed. The flight to Baltimore is an hour and a half, so I should be safe in my mom's arms by the time the side effects get too unbearable...if my flight is on time.

While sitting at chemo for several hours, I've found a lot of time to reflect on my year and to reflect on my many blessings. This Thanksgiving, while I have so much to be thankful for, most especially my TDM1 miracle, I am instead choosing to focus on just one. I am thankful this year for my ability to savor the moment.

Last Thanksgiving, I was unable to savor anything. Last Thanksgiving, I was just 5 days post double mastectomy. I had left the hospital just 2 days before. I could barely lift my head off the pillow and was pale, tired, and in pain. My lovely in-laws came to the house with a complete Thanksgiving meal that they brought all the way to Boston from Syracuse, NY. They didn't want me to "miss" Thanksgiving. But last year, even though I had turkey, I missed Thanksgiving. Because at the end of the day, this holiday is not about turkey, stuffing, or cranberry sauce. This holiday is about taking a collective deep breath, reflecting on all of our blessings, and enjoying family and friends. I was not in any shape last year to enjoy myself or my family.

Norman Rockwell got it right!

Thank you, God, for giving me another Thanksgiving. Thank you, God, for giving me this opportunity to savor my life, my friends, and my family. Thank you, God, for allowing me this second chance, I promise that this does not go unnoticed. This year, I will take the time to savor the moment. As one of my favorite theologians, Father James Martin, SJ, said when discussing Thanksgiving:

"Savoring is an antidote to our increasingly rushed lives. We live in a busy world, with an emphasis on speed, efficiency and productivity, and we often find ourselves always moving on to the next task at hand. Life becomes an endless series of tasks, and our day becomes a compendium of to-do lists. We become "human doings" instead of "human beings." Savoring slows us down....(In prayer) we pause to enjoy what has happened. It's a deepening of our gratitude to God, and reveals the hidden joys of our days."

Thanksgiving used to be a blip on my radar, but now that I am older and oh-so-much wiser, Thanksgiving is my favorite holiday of the year. I know there are no gifts. I know there seems to be no "purpose" beyond just taking a day off, but life isn't about gifts and life shouldn't always be "for" something. I think we all need a breather and some real quality time more than any gift. We all need to savor the "hidden joys of our days." Ideally we would give thanks every day, but thank goodness we do it at least once a year.

There are so many little things for which we should give thanks, and these little joys are often overshadowed by the big stuff. How beautiful is a a baby's smile as they wake from a nap? Or the reflection of a morning sunrise on the skyscrapers downtown? How did we manage to miss the joy that can be found in the simple, but beautiful habit of a kiss goodnight? Give thanks for the smile from a stranger as they hold the door. This Thanksgiving, try to be thankful for the little things that are so abundant and so often overlooked.

I am thankful that I am not on painkillers. I am thankful that this year I am not overwhelmed emotionally with fear and anxiety. This Thanksgiving, I can appreciate the smell of a fire in the fireplace, the sights, sounds and smells of a family gathering. I can recall childhood memories without any tinge of sadness, only fondness. I can enjoy the company of new family members, like my sister-in-law and her family, and look forward to making new holiday traditions as our families grow.

Last year I was crushed by all the sorrow and anxiety that a cancer recurrence brings. This year I am thankful for freedom from that.

I hope that all of you are blessed enough to enjoy the luxury of a moment of peace. Please take advantage of that moment and appreciate it's glory. The rush of Christmas will be here all too soon and we need to ready our souls for it!

What Not To Wear

2010-11-15T23:29:00.004-05:00

In my opinion, patients across America should be outraged. We should be up in arms. We should protest. We should picket the hospital entrance. We should demand better. The current state of affairs is unacceptable!

No, I am not using this blog to share my unsolicited opinions on the healthcare reform sweeping this great nation. No, kind reader, I believe patients everywhere should be protesting...

The Hospital Gown.

Experts across the country are applying for and receiving large grants to study cancer survivors' body image issues. I have sat through hours long presentations about all of the reasons why my body image is not what it used to be. During these "Reclaiming your Mojo Post-Mastectomy" workshops, I never heard mention of the fact that the hospitals themselves certainly aren't doing much to boost your self-esteem when they make you wear these

The pattern is called "classic," like a little black dress or a strand of your mother's pearls

No need for further study, docs. I've got the whole cancer survivor body image issue thing figured out. All we need is to enlist the help of Michael Kohrs, Nina Garcia, Heidi Klum, and the contestants of Project Runway to plan a new line of hospital gowns, and all of my body image issues would be resolved forever! I plan to publish these findings in a forthcoming issue of the New England Journal of Medicine.

I know that doctors are taught in medical school to disassociate a little. The doctor cannot get too invested in any one patient. If you form a close relationship with a patient, your judgement could be called into question when, and if, things start going badly. I believe the hospital gown is a critical part of that institutional disassociation. Seeing every patient in the same drab gown takes a little bit of her humanity away.

Every patient you ever talk to says the same thing: she wants her doctor to speak about her situation and prognosis as if this were happening to the doctor's own family, "if you were my daughter," "If Bill were my dad." We don't want to be just another 27 year old, otherwise healthy, single, white female. We want to be: Bridget- walker, blogger, go-to co-worker, wonderful wife, and fashionista.

The hospital gown may make the doctor's job easier. I can't imagine how emotionally draining the oncologist or surgeon's day must be. It might be easier to look a gowned patient in the eyes and give her horrible news.

But from the patient's perspective, the hospital gown must go. Our humanity has already been stripped from us. Our safe, predictable cocoon of day to day life is long gone. Our bodies have been stolen from us by scalpals and drugs and radiation burns. Please don't make me wear that. Please don't make me walk down the hallway and show my bare bottom to the cute intern that just also saw my breast squeezed by the mammogram machine into the shape of sliced bread.

Please, I beg you, have pity on us, hospital. Take just a little bit of your profits and invest in hospital gowns in a variety of sizes. There are companies out there making these things. There is a really cute company called Dear Johnnies that is making monogrammable hospital gowns for expectant mothers. Why couldn't some really wonderful breast cancer and mammography center buy these cuties instead of the classic navy blue and maroon polka dot print?

If you take pity on us, hospital, the uphill battle that is reclaiming our body image post-cancer would be one giant hurdle easier. We wouldn't be constantly reminded of our vulnerability every time we visit the doctor's office. In this fight for my life, the "johnnie" with the faded pattern, the holes, and the missing ties really doesn't help my confidence. I felt much more alive when I walked into this place in my brand new Burberry trench.

For now, I have been known to keep my cute new pair of leopard print wedges on whilst wearing my "Blue Healing Cascade" patterned hospital gown, just to show a little bit of sass. Because I firmly believe that if you just complimented me on my shoe choice, you will do just one more hour's worth of research into a clinical trial, you will think more carefully before giving me that bad news, you will take good care before making an incision in my breast. If you realize that "but for the grace of God go I," if you see your own daughter when you look at me, perhaps you'll try just a little bit harder to save me?

The Wall Street Journal wrote a 2009 article about the Hospital Gown Dilemma where Hospital Gown Defenders stated that the gown's current "easy-access design 'works well' in emergencies." To that defender I say, forcing patients to walk around the hospital naked would also work well for emergency access, but you would never dare suggest that would you?

In this 21st century world, why must we still rely on tie-closure medical gowns? Surely velcro would be more patient friendly. Everything else in the hospital is secured by velcro. For the love of all that is holy, will someone stand firm and protest with me? Who will lobby Capitol Hill with me for the passage of a federal law banning these?


I took the time this morning to blow dry my hair, and this is how you thank me?

What appointment is he headed to?

Banning the paper, tieback hospital gown...now that's my idea of healthcare reform! Who's with me? I plan to see you next Wednesday when I arrive for treatment, ready to join me in protesting these fashion crimes against humanity.

Scan Results & their aftermath

2010-11-05T23:34:00.004-04:00

Somehow, we are already into November. It is freezing cold and raining here in Boston. My friends are already decorating for Christmas. I have the Thanksgiving grocery list ready to go. The saddest thing and the most surprising thing about life is how quickly it passes us by!

With November comes scan time. It's been three months since my last set of CT scans in August. Last week I spent my usual day at the hospital getting poked, prodded and scanned. Except this time, I came well prepared. After my first post about the horrors of drinking fruit-punch-flavored-contrast, a few of my faithful readers sent along some goodies to help me through my difficult time!

Molly sent along a "diamond" studded pink flask, which I not only brought with me to the CT scan, but I also keep in the zippered pocket of my purse at all times, because a girl never knows when she might need a "diamond" studded pink flask! (Thank you, thank you, thank you, Molly!)

In the words of Ina Garten, the Barefoot Contessa, "How gorgeous is that?"

I took a picture of myself holding said flask, but the picture didn't quite do justice to the diamonds and the beautiful star detail on the front, so enjoy this close up picture instead!

So I came armed to this CT scan with a smile and my flask and with complete confidence that my cancer would continue shrinking.

Drum roll please......

The cancer is still shrinking! I'm still winning!

I think we all know we have the pink flask to thank for this success!

In fact, the TDM1 has worked so incredibly well that the larger of the tumors in my liver has shrunk 22% since we started this stuff 9 months ago! -22% in 9 months, that to me is the definition of a silver bullet!

So the Big Man, Momma, and I went out for a delicious Italian meal to celebrate. It was so wonderful to see Momma and the Big Man so relieved. I don't think we truly understand the heavy weight that these scans carry. We have been doing the scan thing every three months for six years, so we really have it down to a science and I think we deal quite well given the high level of anxiety these moments of truth bring.

That said, the aftermath is pure giddiness. Big Man and I were literally running around in circles in our little 900 square foot condo with joy. We danced together in the living room. We giggled while doing the dishes. Every interaction after this good news took on a party atmosphere. We were fine before. We were doing fine dealing with the unknown, but we had no idea just how much happier and in love we could be without this giant cancer burden. Life beating cancer is so much better than life spent on the losing side. We know both sides all too well.

But now, two days later, I am also thinking long and hard about this new reality. I am thinking about just how young we are. I am thinking about the very real possibility that I could "beat this" cancer. This silver bullet is a miracle. I tolerate the TDM1 really well: getting out of bed gets pretty tough after the infusions, my back aches like I have a constant flu, but beyond those very bearable side effects, I am living fully and I am kicking cancer butt while doing it.

So the question becomes, what is my long term reality going to look like, for reals?

For years my situation has been so touch and go, I have only been looking just one baby step ahead. I've only allowed myself to look a few months into the future. With this TDM1, I'm slowly, with baby steps, allowing myself to make bigger plans. I'm noticing that, subconsciously, I am booking flights months in advance, I am dreaming of career plans, puppy plans, baby plans, house with a yard plans, life plans. Like any 27 year old, the world might become my oyster.

Yet, I am very realistic about my expectations. Beating cancer in my world is very different from beating cancer in any other patient's world. With Stage 4, no doctor will take me off treatment. No doctor will stop scanning me. The appointments, the drugs, the side effects, those will remain the same. How is that going to color my life?

Can we get a four bedroom house with a yard and a garage, all of which requires serious upkeep? I can handle our two bedroom condo. I could maybe handle an additional bedroom, but with the fatigue I have.... Could I handle multiple floors? Living rooms AND family rooms? A real live dining room that is separate from everything else? An eat in kitchen? What if I need further surgeries and I'm laid up for weeks on end? Mamma has been so incredibly helpful for six years, but she too will get tired of flying, and staying, and cleaning when I am too tired. She is thrown into the role of a mother who has a child needing long term care! She needs a break too. Big Man helps, but he works too. How can I be constantly fatigued and still justify this big house in my dreams that someone else needs to manage?

And the children who will fill that house with love. Don't even get me started with those beautiful red-headed children. Can I bring a baby to chemo? When I walk into the hospital, everyone knows my name: the valet team, the security guards, the lady who stamps my parking ticket, the front desk staff. Hundreds of people who care for thousands of people every week, they know me out of every other patient because I've been coming week after week, year after year. Every other cancer patient finishes treatment in a normal time frame. What if I live 20 years doing this? Will my child's first word be "doctor" ??

But I'm ahead of myself here. Let's talk about even getting pregnant in the midst of this! (I've covered my options and that's a post for another day, but I still must raise the point) Can you imagine? And if my fertility options don't work, would adoption be a possibility? Would anyone in her right mind give a baby to a woman with metastatic breast cancer?

So, I guess at a moment when I should most feel happy, I am also nervous. Being healthy makes me nervous. Wow, that's huge!

I know this is silly of me to worry about. I have dealt with such larger problems than, god forbid, living a long life, but I am a type A woman. Planning is what we do best! Planning for a life with a chronic illness, a life facing a terminal illness, it is a scary world I live in.


Christmas 1989: From a young age, I wanted to be a "Big Girl"

For years I have been the 'young person with cancer.' The 'woman' who is still actually just a child. A child trying to be really brave and wear her big girl pants and put on this persona. The 'woman' who still relies on mom. The patient who indulges herself after chemo with a mani/pedi and some serious shopping. What happens when I grow up...with metastatic breast cancer?

Young women diagnosed with breast cancer worry about "fertility after breast cancer" and "careers after breast cancer" what about "fertility during breast cancer?" Forever and ever and ever with breast cancer?

I've made it this far. Most doctors never thought I'd make it five years. I'm going on six and things are moving in the right direction. Take that statistics!

But...I've made it this far and I still want to live the dream. How do we make that happen?

Heavy stuff for a Friday night, any advice is welcome!

Victory!

2010-10-27T10:50:00.008-04:00

I hope my blog silence hasn't led you to believe that I dropped dead during my 60 mile walk! Far from it, in fact. The Big Man and I walked every step together. We crossed the finish hand in hand. We are victorious!

I am not sure how to sum up our 3-Day for the Cure weekend in a way that will do it justice. All I can say is that, over the course of those 60 miles, Alex and I fell in love all over again.

You see, the Big Man and I had only been dating about six months before my diagnosis back in 2005. We were still getting to know one another and then this huge cancer thing was thrown into our laps. Over the past six years, we have done a little dance when it comes to my cancer. I want him to be involved, but I also want to be independent. We want to communicate about complicated emotional issues and we don't quite know how. He wants to get involved and help, but at the end of the day, this cancer journey is mine.

The most difficult step to learn in this cancer dance has been that my man wants to make it all better and take the pain away. We are learning that is impossible. Every day is a new chapter in our relationship. Every day is a learning experience. It can be beautiful, but it is so hard.

The 2010 Susan G. Komen DC 3-Day for the Cure was the high point of our relationship, the culmination of all our hard work. We embarked on the journey still doing our little "figuring this all out" dance, but we left totally in sync. It could have gone either way. I was so nervous that he would hate the walk or wouldn't get the emotion behind it. I should have had more faith in my man's heart. I should have had more faith in how he understands my struggle and appreciated more that he is dealing with a struggle all his own. He may not come to every appointment because there are simply too many, but he feels deeply every ache, pain and every set back.

Each day we were both pleasantly surprised at how much we enjoyed walking and talking together and we were shocked that we could laugh until we cried and come up with brand new nicknames for one another. Our team, The Million Dollar Babies, was perfect. The perfect amount of support and encouragement and comic relief, and it was a large team so that we could have our own private journey as a couple, but we were never ever alone.

As we walked across the finish, Alex looked at me and smiled and said, "Congratulations, Little One." Next to the words, "I Do," that was the sweetest phrase I've ever heard. Alex was proud of me. I was proud of him. We were both in incredible pain!

When we left the 3-Day Sunday night we were no longer those two people traveling the same difficult road. Instead, we left as one person looking forward confidently toward the future.

They say a picture is worth a thousand words, so, without further ado:

The Big Man and Big Girl 3-Day for the Cure journey

music courtesy of Ingrid Michaelson: "Soldier." Everybody. 2009.

Susan G. Komen 3-Day for the Cure

2010-10-04T15:10:00.002-04:00

October has begun. The one month of the year when the entire world seems to join me on the crusade to which I dedicate every waking moment all year round.

I love and loathe October all at the same time. I love all of the pink everywhere I turn. I get joy from seeing pink toilet paper, although I don't buy it because the Big Man has forbidden me from bringing any more pink into the house. When I came home with a pink laptop, he drew a line!

My friend and fellow fighter Courtney
She lost her battle at only 25 years old

Some detractors complain that companies use the pink color to increase sales without actually making any real commitment to the fight against breast cancer. Others argue that selling pink items gives individuals the idea that fighting breast cancer is easily done. These arguments don't bother me too much because I recognize that the world is made up all kinds of people.

As they say, it takes a village.

Not everyone will want to walk, run, or advocate. Very few people will write a letter to a senator or congressman. Very few people will write a check. Even fewer people will actually volunteer their time. But everyone can buy pet food, razor blades, chocolate and jewelry. I don't fault the shoppers for their lack of commitment. Perhaps they are lucky enough to have never been touched by cancer. Or, consider perhaps that they have been touched, but are so emotionally exhausted by the trauma that all they can bear to commit is an anonymous purchase thrown in with all the other week's groceries.

That is OK.

You choose your level of commitment, I've chosen mine.

To the detractors who say that some companies don't donate the sales from pink items, I say: yes! That is an issue that needs to be policed, but regardless of the tiny amount or even complete lack of a donation, the pink toilet paper does raise awareness. It does get people talking, it does make a consumer pause, and it does make people aware. It also might be the first step in a longer journey. Perhaps the exhausted survivor starts by throwing pink razor blades into her cart. The next year she throws razor blades and goes out of her way to fly with an airline that supports Susan G. Komen for the Cure. This year, she takes it a step further and buys Nancy Brinker's new book "Promise Me." Then she is inspired. Next year, she runs a race. The year after that, she registers for the 3-Day and raises thousands of dollars. All it took was one pink razor blade and time.

And so, I love October with all of its pinkness and overwhelming, hectic pace. I relish this rare moment when everyone rallies behind me, this entire month when I see people in front and people behind me in line at the grocery store all with pink items in their cart.

Just as the Christmas season overflows with songs, family, and good cheer, I feel like October is ripe with opportunities for support, education, and hope. No matter male or female, young or old; no matter race, creed, socioeconomic status, or connection to the cause, for four short weeks every year, everyone is behind me in my fight.

My major problem with October is October 31st, when everyone stops rallying behind me while breast cancer keeps killing.

That is where the Susan G. Komen 3-Day for the Cure comes in. That is where I get my fix of support and hope year round. Although the event is truly a sacred experience for me, and although Big Man and I have prepared all year for our journey, I have waited months to talk about my 3-Day for the Cure experience here because I worry that I will not do it justice. But today I will try.

2008 San Diego 3-Day Survivor Circle with Saralyn and Jennifer

I walk in the Komen 3-Day for the Cure every year. Even though I am a seasoned participant, and although some people dismiss it as just another fundraising event, I get deeply excited about the journey every year. I feel the kind of anticipation and nervousness that a small child feels on Christmas Eve waiting for Santa's arrival. My tummy does flip flops and feels like it jumped right up into my throat. My heart pounds fast enough to flutter my shirt-front. I have to abstain from coffee all week for fear of serious over-stimulation. I think about and dream about little else.

This one event has given me more hope than any scan result.

On the 3-Day for the Cure you are transported. Transported to a world where the cure is already a reality: a world without death, a world with only hope and love. You are transported from a place of helplessness to a place full of power. From a place of illness to a place of immense strength. From a place of disappointment, to a place of success. Surrounded by the sound of thousands of determined feet, you can't help but feel carried. When you cry, and you will cry, there are thousands of shoulders available for comfort.

Everyone has a story, one is sadder than the next, and you are no longer alone. I also think the sheer length of the walk, three days and 60 miles, makes every interaction more poignant. Like a summer love where two days can feel like two years, friendships formed along the 3-Day for the Cure feel like lifelong bonds after only a few minutes.

And the finish line!

Thousands of women and men line up shoulder to shoulder in their matching victory shirts and form a tunnel through which you are literally carried. When you cross the finish line, bandaged and broken. When you hobble across the finish and think, surely, I can not move another step. Instead of collapsing, you are greeted by thousands of high fives, deafening cheers, and are rained on by your fellow walker's tears of joy and sorrow. You are lifted up. Your limp is transformed into a confident stride. By being part of something bigger, you feel as though you could easily walk another 60.

If so many people can feel so strongly, can unite and create something so beautiful, no matter how dark the diagnosis, we must win. We will win. Alone, we can do nothing, but together, we can do anything.

The Susan G. Komen 3-Day for the Cure weekend is one of the only times I have ever cried during my journey. I clearly remember the times I have cried outside of the 3-Day. Given my personality, they have been few and far between. I am not overly optimistic or fighting to keep from crying, I simply put my head down and continue to live.

I think this cancer diagnosis is so scary and so overwhelming, that my mind goes numb. My mind only allows me to see one step ahead, one day ahead, one small goal ahead. My mind prevents me from comprehending the full enormity of my situation. But on the 3-Day for the Cure, my mind is confronted by "shock and awe" and for a few precious days I let down my guard. I stop fighting and allow myself to be carried.

Big Man, mom and I will be walking 60 miles this weekend. This is Big Man's first. I get emotional just thinking about him there. I got him a t-shirt: "I wear pink for my wife." I have bought myself some sparkly pink Big Girl pants. We are ready!

I know I sound crazy, but I am looking forward to Opening Ceremonies and walking onto that route hand-in-hand with Alex just as much as I looked forward to seeing him at the end of the aisle on our wedding day.

Many of you non-walkers or non-crew probably think I am insane, but let me try one last time to explain. When you face death, you take stock of your life. You say, "What have I accomplished?"

This is my accomplishment. The $2,500 I have raised this year, the $8,000 I have raised over the past several years, the thousands of miles I have walked are my "last words." On my 3-Day, I am standing up and saying, "I was here. Today, I made a difference. Because of today, I am leaving this world better than I found it." The 3-Day for the Cure is my legacy.

If you live in the VA, MD, or DC area, come out and cheer on the Big Man and me this weekend! Visit one of the Cheering Stations or Closing Ceremonies listed here. If you live far away, register for your own 3-Day for the Cure or make a donation to our team, the Million Dollar Babies!

At the very least, get out there and buy some pink toilet paper, pink razor blades, pink Payless slippers, or a pink plane ticket!

But please, while you may start there, don't you dare stop there.

I thank you.

Wish List Updates

2010-10-01T08:42:00.000-04:00

Happy October, Blogger Buddies! To honor breast cancer awareness month, I have compiled all of your fabulous suggestions and added items to the Ultimate Wish List. Visit the updated list here:

The Ultimate Breast Cancer Survivors Wish List 2.0

It is pretty clear from all of your thoughtful and helpful ideas that you aren't just good readers and faithful followers. You are also all stylish young ladies who never let cancer keep you down - women after my own heart. I am privileged to call you friends.

Among the updates are several calls for fleece hats, to keep you warm in the upcoming cold New England weather. I also love the People Magazine suggestion. Although, I know there is often fierce debate surrounding People v. Us Weekly, I side with People on this one. I have never been steered wrong by People's on target book, music, and movie reviews. I also love the easy crossword puzzle. It makes me feel smart because I often can't even get a single word in the New York Times!

A huge thank you to reader Kristian for the MP3 suggestion! I found some wonderful IPod speakers that come in a spill and drop resistant travel case, which is especially helpful for hospital visits. I clearly remember getting a blood transfusion and the nurse sprayed blood everywhere (that hospital shall remain nameless) Who wears white pants to a blood transfusion appointment? I do, of course! Going to the hospital is no excuse for looking sloppy! I still look fabulous when going to chemo, but I now choose stain-hiding black and navy instead.

Along the same music line, I know music is a very personal taste-specific topic, but I must take this opportunity to suggest my favorite musical artist Ingrid Michaelson. Her songs are beautiful and touching, but upbeat. Her songs "Keep Breathing," "Soldier," "Breakable," and "Be OK" particularly resonate with me as a survivor.

Happy Shopping! And again, please share this list!

The Ultimate Breast Cancer Survivor's Wish List

2010-09-22T02:48:00.000-04:00

Now that life is good, I have decided that it is time to give back!
Tonight I had a thought that just would not stop bothering me all throughout dinner and for hours as I tossed and turned trying to fall asleep. Have you ever thought about the fact that right now, at this very moment, a woman somewhere is going to bed bearing the burden and sorrow of a new cancer diagnosis?

Life is good for me right now, but this thought haunts me. Every day, every minute of every day, in every corner of the globe, someone else is going to be touched. It might be you right now. It might be your mother. It might be your daughter. It might be your wife. It might be your sister. It might be your best friend. Did you know one woman is diagnosed with breast cancer every three minutes?

Well, that thought has been haunting me tonight probably because, for once in my life, my treatment is working. But for some other woman somewhere life is not good. I think I heard someone call this phenomenon "survivor guilt."

I have learned so much about fighting breast cancer over the past five years. I have so many tips and tricks. I have so much knowledge to share. So, I have decided that during this quiet time in my treatment, now that my chemo seems to be working, I am going to take advantage of this opportunity to give back and share my tips.

And so, without further ado, I present to you, my "Ultimate Breast Cancer Survivor Wish List!"

For your shopping pleasure, I have compiled a comprehensive list of all the silly little items that got me through my 5 diagnoses, my 7 surgeries, my 30 rounds of radiation, and my 11 chemo drugs thus far! These items not only got me through, they also kept me fabulous at moments when I could have felt my lowest!

When I was diagnosed, when I was looking at major lifechanging decisions like whether to lose one breast or two, I did what I knew best, I Googled. Sadly, my Google searches turned up really depressing, hospital-like sites. Nothing fun, young, supportive, or helpful really popped up. Everything was very...sterile.

I hope that this post can fill that void. This is my advice from the trenches. All of the items I have added to this Wish List I have done so with care, so please indulge me as I explain the benefits of each. If you have a mother, a sister, a daughter, or a friend currently struggling with this disease, feel free to pass along this wish list for her shopping pleasure.

I know a few of you who follow my posts have already been diagnosed, so if any of you have anything that you think I should add to the "Ultimate Breast Cancer Survivor Wish List" please share these items in the comments section below. I will add items that I feel are fabulous, but remember, this is about feeling fresh, fun, and lady-like at a time when God seems to be testing us! Don't suggest anything sad!

The Ultimate Breast Cancer Survivor Wish List

First off, I have recommended Fuzzy Socks. No real explanation is required here except to say, you have cancer. You deserve to be comfortable. Embrace it. Use the socks!

Next on the list we have a lovely "Spring Flowers" pattern underarm pillow. When I was diagnosed, I was lucky enough to call a lady named Saralyn my friend. Saralyn sews, and she was kind enough to sew me my very own underarm pillow, or as Saralyn called it, a "heart pillow." For a breast cancer survivor facing a mastectomy or lymph node resection, this pillow is your new best friend! I recommend getting two, one for under each arm. After surgery, your arms are going to get incredibly tired all the time. They feel like giant weights attached to your tender chest. You can't ever get them quite comfortable. The pillows are your saving grace. No matter how I tried to bend my regular bed pillows, they just weren't cutting it! These underarm pillows are just what the doctor ordered!

Next on the list are two "TopsyTurbans." When I faced my first round of chemo, I bought into the hype and purchased an entire drawer's worth of Hermes scarves. The problem with scarves is, no matter the pretty pattern or expensive silk, when you don't have hair you really run the risk of looking like a pirate. I was never very patient and, even after taking a workshop, I couldn't quite figure out the art of tying a scarf in some cool manner that would actually stay put. Enter the TopsyTurban. These things come in every color and fabric under the rainbow, and there's no super-long, pirate-looking tail hanging down the back of your head.

The second TopsyTurban isn't even a Turban at all; it's really more of a nightcap. In a cozy cotton fabric, it looks more like the kind of hat a brand new infant would wear to leave the hospital. Like that beautiful, bald newborn baby, you too will lose a lot of heat out of your head on chilly fall and winter evenings. Why stick your head under the covers, or wake up with a stuffy nose? Why not look cute at night too! One of my mom's best friends sent me my very own pink nightcap and I have never slept more comfortably. I still have mine and use it on particularly cold Boston winter nights, even though I now have a full head of hair.

Speaking of sleeping soundly, I have included a super attractive sleep mask on the Ultimate List. Why would I include this you might ask? Well, have any of you ever been in the hospital overnight? Let me just tell you, the nurses come in every 15 minutes to check your blood pressure. The janitors like to mop the floor and take out the trash at 3 am, and if you don't have a private room, God help you! I have had multiple hospital stays- one time with a sleep mask and one time without. Let's just say, whether you have breast cancer or whether you are just visiting the hospital for bunyon surgery, no matter the ailment, please come prepared with a sleep mask. And why not make it a fabulous, paisley-print sleep mask? Why would you settle for the typical black sleep mask that you can get at CVS when pretty paisley is available?

Next on our list is a blue stripe, ruffle-front, button-down shirt. When you have a mastectomy or a lumpectomy, it will be a few weeks before you get your full range of motion back to your arms. The one icky, oversized, boyfriend shirt you have in the back of your closet, that you only wear when painting the house, that shirt will be the only shirt you can put on for weeks because you won't be able to lift your arms over your head. Why not be proactive and get a button down that you can wear with pride? This one is super cute. I love the ruffles. You can wear it with yoga pants around the house, or slip on some jeans or leggings if you decide to be brave and venture to the grocery store for the first time in a month.

Speaking of button front, that style isn't just reserved for shirts. I am a firm believer that you only feel as good as you look! It is important to not just have lounge-worthy clothes when you are facing surgery. You need to be prepared with one pretty, but still comfortable and practical outfit. This Max and Cleo button front dress fits the bill! My mastectomy fell just three weeks before Christmas, I couldn't raise my arms above my head, but I sure as hell wasn't going to let that keep me from celebrating Christmas with my family and feeling somewhat normal and pretty as I did so. My button front dress kept the whole family happy.

Next on the list is Palmer's Cocoa Butter. I had been given any number of scar lotions and stretch mark lotions that didn't help one bit after my first surgery five years ago. It wasn't until my third surgery that my surgeon recommended I try cocoa butter. I tried the cocoa butter on my new scar and it practically disappeared. I then used it on two other scars that were two years old at that point and it worked on those old scars too! Give it a try and let me know how it works for you! Just remember, you need to apply every day and you must be patient. I also found it helpful during radiation to keep my skin happy and smooth. Although, if you have a lot of post-radiation burning, I still recommend you chat with your radiation oncologist about prescription strength cremes.

The Clio BeautyTrim is my greatest find. When I had the lymph nodes under my arm removed. No one told me I was going to have a Grand Canyon for an armpit afterward. There is no way I could get in there ever again with a regular razor blade, and bikini season was quickly approaching! I needed help, and the Clio Beautytrim came to the rescue. It's a teeny, tiny, battery operated razor that fits into the deepest crevices. Because its battery operated, I don't have to worry about nicks or cuts that could lead to lymphadema, and, of course, it comes in pretty colors and patterns!

I include a suggestion for a 1 year subscription to Vanity Fair because the magazine selection in hospitals is horrible and because Vanity Fair has everything from current events to Lindsay Lohan.

If Vanity Fair isn't your speed for hospital reading, I recommend you try the book Promise Me. Promise Me is Susan G. Komen for the Cure founder Nancy Brinker's inspirational memoir. Nancy Brinker is a powerhouse. When I was facing a devestating diagnosis, knowing that someone like Nancy was working hard day and night on my behalf, it helped me stay inspired and it helped me sleep at night. As if that's not reason enough, they include my story in one of the mini-chapters about how Komen for the Cure's work is helping survivors today! (shameless self promotion!)

When you go through chemo, your tastebuds change and with that your sense of smell is going to go through the roof. The Big Man can attest. I can smell Starbucks from three blocks away! I'm a little Bloodhound! The only thing that helped with overpowering smells when I was/am/will always be in chemo was Mrs. Meyer's Scent Diffuser. It wasn't so floral that it made me nauseous. It was just pleasant. It was just what I needed!

Gentle Touch post-mastectomy cami and pajama set. If you remember nothing at all from this entire wish list, just remember this one item. The hospital is going to try to sell you a post-mastectomy camisole. Trust me, I've tried post-mastectomy camisoles at three different hospitals and for four different surgeries. The Gentle Touch is the best! First off, its cotton, not some polyester, rayon blend that gets SO uncomfortable after 48 straight hours in bed. Furthermore, it has a velcro closing front so getting into and out of it is a breeze when you can't lift your arms. As if that wasn't enough, it comes with matching pajama pants, and it has a pretty ribbon detail down the front so I actually wore it out in public like a tank top underneath cardigans and blazers! If you prefer just to buy the camisole and not the pajama pants, that's certainly fine. You may do so here.

And finally, Moroccan Oil. An odd addition to a breast cancer survival list you would think, but really a life saver. If you can't lift your arms over your head, blow drying your hair is hell. I found Moroccan Oil (thank you, Ellen!!) not only left my hair shiny and smelling good, it cut my blow drying time in half. It was a lifesaver when I was relying on my impatient mother to dry my hair, and it continued to help me as I slowly recovered.

I think that's enough for now, but again, if anyone else has any additions, please share them in the comments. If you decide to buy anything off of the Ultimate Wish List, proceeds from the sale of these items will benefit Thrive Together, a Boston area charity that provides special support and education services for young women under age 50 who are diagnosed. And finally, I want to reiterate strongly that, this is a wish list I set up for others. I don't need nor do I "wish for" any of these items. Sadly, I've been there, done that, own it all already! Instead, I hope you or someone you love can find some help from this post at a time when help is most needed. It's time I gave back!

Fresh Fall Start

2010-09-13T19:07:00.005-04:00

Here in Boston, the weather has gotten suddenly chilly and the days are getting noticeably shorter. For the Big Man, a high school English teacher, summer is officially over. It is a start to a whole new year. In our household, Labor Day weekend seems like a much more noteworthy holiday than even the hoopla of New Year's Eve.

In my metastatic breast cancer world though, I follow a different calendar. I start a new "year" every three months. Believe it or not, my past three month "year" has already come to a close! It's been only four blog posts, one fast summer, and two glorious holiday weekends since my last set of scans. In June, I celebrated my first real out and out victory in my fight against cancer. For years the words "no change" or "stable" were actually good terms. I hadn't realized what limbo I was living. For five long years, the cancer never actually shrunk. It either grew or it stayed the same. The status quo was a victory. I was simply keeping the beast at bay, I had never before sent it running for the hills.

Then my little silver bullet came along. In June, for the first time, with the help of this TDM1-GDC clinical trial I started winning!

But last week, I was facing a new question, a new challenge. If you remember, when I first started the clinical trial I was taking both TDM1 and oral chemo pills called GDC. That combination almost killed me. My platelet count fell to dangerous levels. I was breaking out with "spontaneous bruising", which might sound tame in medical terms, but was in reality the scariest thing I've ever been through. I also couldn't get out of bed because every step, every breath, every movement hurt from the inside out. So I threw in the towel and I was devastated. But when I got the good June scan results, my devastation turned to hope.

Last week, as I went in for scans and results, I was again filled with dread. I faced a new question: without the GDC pills, would the cancer shrink? Would TDM1 alone be enough to keep this cancer running for dear life (I think that phrase takes on a new, opposite meaning in this case, don't you??!)

Well, my friends, the verdict is in:

I am kicking cancer's ass!

In the past three months, the TDM1 has shrunk the original tumor in my liver visibly. I quote from the Radiology Report:

"There is an ill-defined mass in segment 6 of the liver which is slightly decreased compared to prior examination and measures 1.4 X 1.1 cm. "

But here's the best part...drumroll please....the scan doesn't even mention the second, smaller, newer liver "lesion" that showed up in April and started this whole clinical trial drama!

That vile, nasty, evil thing that sent me to the hospital for a biopsy that hurt like hell, it just disappeared so quickly and so quietly. That liver lesion arrived with so much pain and hoopla, and then it disappeared without even a peep! Take THAT cancer!

The TDM1 is working. I love my little silver bullet.

Me heading off to pre-school,
I guess at that age you didn't need a backpack?
I don't know what I love more,
my pig tales or my blue big girl shorts!

This September is truly a fresh start for me as well as for my husband. This morning, I drove past an elementary school on my way to Starbucks. I saw and heard dozens of adorable children with shiny new backpacks, new haircuts, vivid white polo shirts, and smiles of pure joy race to visit with classmates.

As I drove past, I felt a kinship with those elementary schoolers, not because I was reliving my own childhood, but more because I share in their joy. This week, every phone conversation I have, every time I see a friend, every morning when I see the Big Man, I am filled with unbridled joy and the excited flip flop in my tummy that comes with new beginnings.

Today is a shiny, new backpack kind of day! Who knows what sort of terrible challenges lie ahead for the rest of this year, but today as I embark on a new chapter, I am fresh, well rested, healthy and new. My liver is shiny and clean and the world is my oyster.

I hope that all of you can take a bit of my energy today and face this new week with some ounce of unbridled joy and optimism. To see that sort of unconditional trust, hope, and love in an adult is an unusual gift. I think if we faced each morning like a child the world would be a better place, and our day to day lives would feel just a little less painful.

I want to say one last final thought about my second liver spot. That evil creature kept my entire family and all of you, my blog friends, awake at night with fear, but we must also remember, it also united us all in prayer and in hope, and, now, our prayers have been answered. That's the beauty of life, the same thing that hurts us more deeply than we can imagine, also opens us up to more joy than could have been enjoyed before. A rollercoaster is only as thrilling as its scariest hills and loops.

Thank you all for helping me and encouraging me along this journey. I cherish all of your comments and support more than you can ever know. I deeply believe I wouldn't have made it to this moment without you.

My Girls

2010-08-11T15:53:00.004-04:00

I know I have waited too long to post because people have started asking, in hushed voices, "Is everything OK?" I apologize for the extended blog silence. Yes, everything is OK. I am here, I am happy, and nothing major has happened with my health.

Everything is actually fabulous! I have just been joyfully living life in-between scans. This blog is a wonderful tool for me, but it can also be quite emotional to revisit feelings and thoughts. For the past few weeks, I found I couldn't write anything. I just wanted to not revisit any cancer-fighting feelings. I just wanted to be "normal". The next set of scans are already coming up on September 1st, but for the past three weeks I have been happy, relatively "healthy", and I have taken advantage of that time to visit my best friends.

From Boston to New York, New York to Baltimore, back to Boston, and then on to Chicago, I have been jet setting from city to city for birthdays, beach trips, and weddings. Basically, I have been enjoying life as all 27 year olds should! That time with My Girls has made me want to write a little ode. An Ode to My Girls. So I am breaking my silence with a love letter of sorts!

Since my diagnosis, I feel as though I am living in that movie "Groundhog Day." I am forever 21 years old. Whenever doctors talk about me to their colleagues they say something along the lines of "caucasian otherwise healthy female diagnosed with metastatic breast cancer at 21 years...". I also revisit the age and the big diagnosis often when I speak with survivors or at high schools and colleges or with the media about my diagnosis.

Since I am always stuck at 21, and since I now celebrate good scan results or cancer-versaries, my birthday has kind of taken a back seat. Often when I make big plans for a birthday trip or birthday party or birthday dinner, life has intervened. My 22nd birthday I was so frail and sick from starting chemo, I just didn't know if I could do much of anything. For my 25th birthday, my life had been thrown upside down just a few weeks prior with the sudden death of my father. When I turned 26, I was going every week for chemo treatment and my blood counts were dropping so I was pretty much celebrating in bed!

Long story short, since the big 2-1, many birthdays could have passed without my noticing! But...I say "could have" because I am blessed with the best group of girlfriends this side of heaven.

My Girls never let an opportunity for celebration pass without the appropriate amount of fun! My Girls always remember, and they always surprise me with plans. For example, I turned 27 in July (Happy Belated Birthday to me) and they set up a Birthday Rodeo complete with live music, BBQ, cowboy hats and a Dave Matthews Concert!

My Girls are family. They know me better than I know myself. They know me so well that they know what's best for me! When I am spewing objections about how everyday seems to be the Bridget Show. When I refuse to plan yet another special day to celebrate my life. When I object to visitors in the hospital claiming all I want to do was sleep, my girls show up with People Magazine in tow and they make me feel my age, which is a gift beyond anything I can ever give in return. For those few precious moments when I am giggling with My Girls, I am able to forget all of the cares and worries and responsibilities. Instead, I can just belly laugh.

They are not afraid when I turn green with nausea. It is not below them to spend an entire afternoon and evening snuggling in bed with me because I am too tired to go out. When I am willing to go out, they realize I can't drink a ton and so we do something special like bowling, riding bumper cars, or seeing a concert.

These women have taught me that thoughtfulness isn't showering someone with gifts. Friendship doesn't mean spending an exorbitant amount of money to spend time together at the latest and greatest hot spot. We don't even have to go out for a meal to have a good time.

True thoughtfulness, true friendship just means being there. My Girls don't expect me to "talk about it". There is no pressure. We pick up exactly where we left off, and, no matter what tragedies or huge changes have happened to all of us, we can always find one another to forget and to be surrounded with laughter. We laugh until we cry. But when the crying comes, and it does come, for all of us not just for the Sickie, we all know we are surrounded: surrounded with warm hands and long arms, shared tears and kisses.

I am blessed with so many true friends and with so much support. I don't know what I did to deserve it or how I got so lucky. As a child, I always bemoaned my lack of friends. I was always the kid at recess without any friends. Then one day, I woke up with this group of fabulous, successful, and funny young women. Thank you, ladies, for supporting me when it is often you who needs support. Thank you for helping me feel normal and for keeping me sane, but most of all thank you for keeping me real. Living with breast cancer can make me narcissistic or keep me from seeing the forest for the trees. Spending time with each of you keeps me from getting swallowed by the big black hole that is "living with cancer." You help me to realize that all I'm really doing is living.

Enjoy the View

2010-07-09T19:46:00.000-04:00

Another weekend is upon us. I don't know how time has flown by so quickly!

My Fourth of July holiday was fabulous; everything we expected it to be and more. The Mount Washington Resort is spectacular, although I think if we went back we would choose not to go on the Fourth of July. It was slightly too busy on the Fourth. The Resort had arranged for some reenactments of the Revolutionary War and the Gettysburg address. Driving up to the resort, we thought our car was getting hit by a bevy of errant golf balls from the nearby course, it wasn't until we turned a corner that we saw men in uniform and on horseback setting off fake cannon fire that we realized the banging sounds we heard were the blanks from the cannon! My little Jetta made it back from New Hampshire unscathed. While sitting on rocking chairs with a cup of coffee looking out at Mount Washington, you truly think that you could be the only person on the planet. Seeing children in the other room sitting on Abraham Lincoln's lap taking pictures takes away a bit of the wonder of the mountains. But other than the reenactments, the trip was perfect!

We could have stayed there forever. Every morning coffee and juice was delivered to our door so we could stay in bed as long as possible. The food was out of this world and the service was impeccable. No fewer than four people helped us out of the car and with our luggage. Our waitress was adorable and attentive and we had the same waitress and busboy the whole weekend. We spent a day at the spa, sitting together in robes with tea, and saunas, and whirlpools, getting a massage and a facial. We wandered the grounds together hand in hand. It was exactly what we needed.

It is actually not until those moments of total and complete relaxation that the enormity of our situation can be truly understood. When we are in the moment and in a doctor's office or waiting room, we are just trying to make it through the day. The stress we carry day in and day out can be so overwhelming that it is actually incapacitating. The stress actually takes away our ability to look at our situation as a whole. I believe that at those most crucial moments, like scan times, if we were to take a step back and truly comprehend the amount of stress on our shoulders, we would crumble.

It wasn't until we had been at the resort for two days, after the massage, when my husband and I were sitting quietly holding hands and staring at the majestic Appalachians that it washed over us. We looked at each other and had a new found respect for our relationship. We had made it. We made it through another trial, another roadblock, another test, and we have come out the other end and still found each other. We have found this magical place.

But we didn't just sit around and get pampered. We also explored the mountains. At a friend's suggestion (Thank you, Molly!) we took an afternoon hike up Mount Willard. Big Man was adorable. He stopped after crossing any rock or little dribble of water or slight incline and offered me his hand. He looked afraid that I would break. I just plunged forward, head down, eyes wide open, and focused on putting one foot in front of the other. Although we ended up at 2,800 feet when we reached the summit, the hike was only a mile and a half each way, but it was quite steep. That said, when we reached the summit, the view was absolutely breathtaking!

I was suddenly giddy! Can you believe it, people? This time last month I couldn't get out of bed. Just two weeks ago, my platelet count was at 15,000 and I needed blood transfusions. I couldn't walk from my bed to the kitchen for a glass of water let alone hike up a mountain! I wanted to do it again. I wanted to do Mount Washington! I could totally do an eight hour hike up to the top of Mount Washington, so what that its the highest peak in New England. I'm totally healthy! When we got to the bottom, I was talking about hiking the whole Appalachian Trail!

Big Man laughed, shook his head, kissed my forehead, grabbed my hand and said, "Let's go put you to bed!"

Big Man knows me too well. He knows this journey too well. I fell asleep in the middle of fireworks.
I could barely move the next day. I may be handling it well, but the silver bullet is still chemotherapy. But one day, one day, that silly little Appalachian Trail won't know what hit it! I'm scheduled to go in for my next TDM1 infusion on July 21st, but today, we are triumphant! Today our heads are clear and we can climb any mountain. It's amazing what summer vacations can do.

Happy Friday, everyone! Get out there and climb your own personal mountains this weekend.

I Think I Might Be Winning!!!!!

2010-07-01T18:21:00.002-04:00

I wanted to start everyone's holiday weekend off on the right foot. Get the champagne out, people. Put away the Big Girl Pants and put on your prettiest pair of Party Pants because I am winning this battle.

That's right, you heard me. After months of set backs and pain and side effects and trying oh-so-very-hard to keep a smile, I finally got one piece of good news!

Yesterday, my scans showed that the cancer in my liver had SHRUNK!!!!!!!!!

This TDM1 really might be that silver bullet I had hoped for. Now, it isn't a cure, but it is clearly working.

For the past four years, one liver spot had been there, lurking. It hadn't changed size or shape in four years. It hadn't grown, but it certainly hadn't shrunk. Then, a few months ago, a second little bugger in my liver showed up. The scans yesterday showed that, after only two rounds of TDM1, both tumors had shrunk visibly. One went from 2.8mm to 1.3mm. The other had shrunk from 1.6mm to .8mm.

My Doctor was gleeful and I take my cues from her. I'm not planning for dozens of little pants babies quite yet, but I could have the year of quiet that I had hoped and prayed for. I might even have a couple years of normalcy and quiet. The goal is that these suckers keep shrinking and that the side effects remain manageable. My heart function dropped slightly, but it was still above the 50% mark, so we are not going to worry about that today. I am going to exercise and try to keep the ol' tinker in Lance Armstrong-style shape so that this drug can continue working its magic.

My cancer had been humming along in my body for the past four years and now its been hit with a new drug and it doesn't know what hit it! Here's hoping my little silver bullet keeps killing and keeps shrinking. But let's not hope for too much.

Today, I am going to take this news and stick it in my back pocket. I am going to enjoy a fabulous Fourth of July weekend. Big Man and I are going to let our hair down and let our breath come out in a big sigh of relief. We are going to start planning our futures as all 26 and 30 year old's should do. The world is our oyster today, and I must say, we earned it.

Cheers!

Here We Go Again

2010-06-30T09:14:00.001-04:00

Sometimes I feel so selfish. So narcissistic. Here I go again! I am asking you all today to keep me in your thoughts.

Its that time again. Somehow, 3 months has gone by. They have gone by quickly in a blur of tests and schedules, pain and determination. I am only just now getting a handle on things, and yet today I am again forced to buckle in and I can feel the roller coaster chugging toward that huge, imposing ascent. I am screaming, "No not yet. I'm not ready yet!" I have just in the past two weeks gotten a handle on my life now with the latest diagnosis. I have just these past two weeks felt well enough to get back out there into this thing called life. I have just now been brave enough to make plans. I have felt strong enough emotionally to begin calling my wider circle of friends and act normally. I have only now begun to delude myself, "Maybe I'm not sick. Maybe I'm being too dramatic. I bet I'm going to live a really long time and all of this will seem like some immature mountain that I made out of a molehill when I was 26."

But now it's scan time. There is no getting around it. This afternoon, I go to see my doctor to get the results. The guillotine is sharp and glistening in the sun. A crowd has gathered. I just have to climb the steps and learn my fate. Are the drugs working? Has anything grown? Can I stay on the trial?

And then, I let my imagination wander even further, maybe the drugs have worked so well all of those teeny tiny scary cancer spots that we have been watching nervously for years, they are scattered all throughout my body, maybe we have found the silver bullet drug that I hoped for. Maybe they have all disappeared??

Or I could be stuck today somewhere in the middle. In no man's land, which is also so very hard to overcome. No change. The cancer has not grown, so let's assume the drugs are working, but we have no evidence. There is some tempered celebration, but the dreaded spots are still there.

I have been anxiously awaiting a phone call all week. I have been riding this roller coaster long enough now to know the drill. If the results were very bad, like life threatening bad, the doctor always calls. She always calls on her cell phone in the evening when she gets home. Not because she didn't find time during the day to deliver the bad news but because that way she has all the time in the world to answer any of my questions. I love her!

My witching hour is sometime between the hours of 6pm and 8pm. I have had twenty scans in the past five years. Of those twenty, six have come back badly. I have still had more good news or in between news than I have had bad news. I like to think that is a sign of me winning. Yet, six bad phone calls is enough for you to notice a pattern.

She calls my cell between 6pm and 8pm from a blocked phone number. So all week I have been on lock down. If Mamma calls or one of my girls calls, I angrily hit ignore (sorry gals!) I am as single minded and focused on my cell phone as a young teenage girl waiting for that return call from her date, except without any butterflies of excitement.

On Monday, the poor Salvation Army man made the mistake of calling my cell phone at 6:15pm to remind me of the pick up of some donations on Tuesday. I almost took his head off. Poor man! None of this is his fault! Then Comcast made the mistake of calling to let me know they changed their name to Xfinity. My service is excellent and the cost is reasonable, but that errant phone call alone was enough to make me want to change my provider!

So far so good, no midnight phone calls and we are trying to deal here at the Big Man and Big Pant household.

How do we deal? Basically, we make plans and spend money on the future. The sensible thing to do this upcoming holiday weekend would be to stay close to home. We live in Boston for goodness sake, there are some fabulous Fourth of July festivities right here in our back yard! But no! Not the Big Family! Instead, we satiate our anxiety by plunking down some cash (that we don't have!).

This weekend, we are going to take a road trip to New Hampshire. To the Mount Washington Resort to be exact. A non-refundable hotel package. We decided this over the weekend as I was having a meltdown in the kitchen. The Big Man said it first, "We need to get out of here."

He's right. I don't care what happens this week, or where I have to be, or what huge, life altering decisions I have to make. We're getting the heck out of dodge. We are going to hike to high peaks and stare out into the sunset and ponder life's great mysteries. We are going to work up a sweat on the tennis court. Then, we are going to get a couple's massage. And, of course, there will be fireworks.

So I must take a deep breath this morning and know that everything will be fine. No matter the results today, life goes on. Life is beautiful and I have a beautiful partner, and no huge news will change that. Our holiday weekend may be a celebration of my cancer butt-kicking skills. We could be giddy with excitement and all of the potential for our wide open future. Or this trip may be just the vacation we need to steel ourselves for that next chapter in this journey.

Whatever this turns out to be, for right now, I'm nervous as hell and would appreciate all of you lifting me up in your thoughts. Thank you for reading and thank you for caring. This moment really is what my blog is all about. A place where I can remind everyone all at the same time, while you're headed to work today, I'm headed to my own personal guillotine. Wish me luck!

I Am Radioactive Man!

2010-06-17T21:02:00.007-04:00

I stumbled upon an interesting article this week. According to some recent studies, Americans get the most medical radiation exposure in the world: The Radiation Risk.

While America is often considered a leader in the field of medicine, our reliance on high powered tests to diagnose serious medical conditions has some side effects. Specifically, too much radiation exposure increases your risk of developing cancer.

Well, then what am I, Cancer Girl, worried about you may ask? Good question. You may recall in previous posts I lamented about how alone I feel in the hospital. When the nurse approaches you wearing a floor-to-ceiling sterile gown, sterile blue booties, and giant yellow plastic gloves that cover her arms up to her elbow, all to protect her from being exposed to the medicine that is about to go into your arm.... I'm just sayin', it could send the wrong impression! When I go in for a scan, the technicians don't just put on protective clothing or move behind a protective window, instead the entire room clears and they actually leave the room and go down the hall. So, yes, I might feel a little isolated!

These moments of feeling like a guinea pig or lab rat were one thing in the beginning. In the beginning I was so focused on kicking cancer's butt that I didn't stop to worry about what exactly was going into my body. Just two weeks after my first chemo treatment, I could feel chunks missing from the giant hard mass in my left breast, so instead of worrying about any long term side effects, I said, "Bring me more!"

But now, after five years of being poked and prodded with no end in site, I'm starting to feel a little sorry for myself and I'm starting to wonder what my end goal really is. Let's say I live until I'm 80, I know what otherwise healthy 80 year olds look like. What in the world will I look like? What other ailments might I have? What am I doing to myself?

I've made myself feel better by reminding myself that many of my peers are out on all-night benders in New York City and I'm not. Ozzy Osbourne turned out relatively OK. I don't really have too much to worry about, but then this article came across my Google Alerts. Suddenly, that nagging suspicion that perhaps I was indeed a walking freak were suddenly confirmed.

Said article discusses the issue mostly from the perspective of the average American, the average healthy American, reminding me that I am, in fact, not an average healthy American. It argues that we should fight for doctors to rely less on tests like CT scans because too much radiation carries risk. Frankly, in reading the article and looking at the numbers they provide, you should all breath a sigh of relief. One CT scan to diagnose whatever brought you to the ER at 3am will not kill you.

Instead, I am taking one for the team! The article compares our exposure to radiation from medical tests to the radiation exposure of survivors of the Chernobyl Nuclear Disaster and studies of the Japanese atomic bomb survivors. Those survivors had between "50 and 150 millisieverts of radiation. A chest or abdominal CT scan involves 10 to 20 millisieverts."

Let's put those numbers into real life Big Girl measurements. For five years, I have gotten chest AND abdominal CT scans every three months. Those scans are unpleasant enough because I have to sit in the hospital drinking nasty pink fruit punch mixed with metallic tasting drugs for two hours (thank you, thoughtful readers who sent me flasks and Flamingo Shaped Beer Bongs to help make those sessions more bearable) but now we also have to do some Big Girl math.

4 CT Scans a year X 20 millisieverts a scan = 80 millisieverts a year X 5 years = 400 millisieverts of radiation

Well goodness gracious, its like I lived through Chernobyl and both Japanese A-Bombs!!!

This math also reminds me of another funny little test I get called a MUGA scan of my heart, which happens, coincidentally enough, in the hospital department called "Nuclear Medicine." After every MUGA scan, which I get every 6 months to make sure my heart is functioning properly, I am given a tiny little card that the technicians tell me I am to carry with me for approximately 48 hours. Basically, this little card tells officials that I am radioactive. Apparently, some poor patient left his MUGA scan and drove back to his home in New Hampshire, but on the way home he got pulled over by a state trooper who had some special bomb sniffing equipment in his car. At this time, the little notification cards were not invented yet and the poor soul was dragged through quite a few hours of explanation.

So, thank you, Google Alerts for confirming that I am in fact, Radioactive Man! I'm even more of a survivor than I thought.

But on a more serious note, as our country advances with medicine, more and more patients are surviving many years with serious illnesses like cancer and other ailments that 20 years ago would have been a death sentence. How do we, as a country, support these survivors? How do we even know what to do, or what we will need to do in the long term, to support one another?

The Big Man

2010-06-10T22:35:00.003-04:00

I am feeling really wonderful today. I had an infusion of TDM1 on Wednesday and, although the day was long, I sailed through. My tummy was a little upset and I slept all afternoon, but on Thursday I woke up and felt ready to take on the world.

Let's keep our fingers crossed that this continues. I am confident that I can fight this cancer and not compromise my day to day life. Balancing treatment and quality of life is a fine line to walk. It sometimes feels like I am walking one of those really, really high tightropes. All I know is, today I am walking that tightrope proudly, and I'm walking it in some hot pink high heels!

Because I am doing so well, I am going to take advantage of this opportunity to shine the spotlight on another. It's time to highlight The Big Man!

The Big Man makes me happy. I hope that everyone is blessed with a love like ours at some point in their lives. I met him fall of my senior year in college. CC, my best friend at BU, brought me as her wingman to a party. She was there to meet a boy and, somehow, I was the one who ended up meeting a boy.

The Big Man obtained that nickname on this blog because he is my 6 foot 4 red head with freckles and the body of the David. He who smells like lemons, and sunscreen, and all things that are good in the world. When he throws his arms around me, he makes me feel safe and I fit just right.

That first evening, the Big Man held the door open for another girl as our group started leaving the bar. He held the door open for another girl and there, in that moment, I felt the wind get knocked out of me. I wrapped my sweater around my shoulders a bit tighter and thought, “He is such an idiot. We would be so good together, and he doesn’t have any idea what he’s missing.” That was when I fell in love, but I kept falling every day after that. Everyday since I met him six years ago I've been falling ever deeper. Even tonight, as he screams at the Celtics on tv, I have to giggle and a part of me falls even further in love.

After my double mastectomy, the husband helped immensely. He slept on the floor of my hospital room. He held my hand. He brought me special soft blankets from home. He helped me with my IV pole and awkward open hospital gown as I shuffled down the hospital hall trying to offset any risk for blood clots by getting active. He really was my knight in shining armor. I do fall particularly in love with the Big Man at the hospital, but not because he is my knight in shining armor and not because he nurses me back to health, but because he is always so totally and completely himself.

When people get nervous, everyone does a little something different. When I get nervous, I drop things. When my mom gets nervous, she talks super loud and super fast. When my oldest brother gets nervous, he gets bossy. When the Big Man gets nervous, he helps. He likes to volunteer to help out in any way possible in the hopes of working off his nervous energy.

When the Big Man met my parents for the first time, he was constantly hopping up. Offering to carry drinks, opening doors, and cleaning. He would get up before anyone else and, while my entire family had breakfast in their PJs, Big Man was dressed to the nines in khakis and a button down and would sweep my parent's back patio...in the rain.

You get the picture.

Anyone who has spent any time in the hospital knows that it is a big game of hurry up and wait. After checking in at the front desk, you are ushered into a waiting room. Twenty minutes later, your name is called and you are escorted to....another waiting room. Five waiting rooms later, you are awkwardly sitting in a paper gown on an uncomfortable exam table...waiting.

Chemo is no different; lots of activity for very little forward progress. The tactic the chemo peeps like most for making you feel like you are moving forward when really all you are doing is waiting is providing you with bogus updates. The Chemo Pharmacy takes HOURS. My infusion only lasts half an hour. The active dripping of drugs into my veins takes 30 minutes. And yet...I wait for the pharmacy to mix up my drugs for two hours. Two whole hours.

So the greatest trick that the chemo nurses use is providing you with "pharmacy updates". A couple weeks ago, the Big Man graciously accompanied me to a whole full 10 hour treatment day. After hour 3, the nurse comes to apologize for the wait. "The pharmacy is just mixing up your drugs now. Really, they should be ready any moment. I'm sorry to keep you waiting, but hang in there!"

I smile and open a new magazine knowing that this explanation is code for, "You've got at least another hour, babe." The Big Man looks confused and then quickly stands up straight, nervously wiping down his khakis. "Do you need my help at all?" He asks the nurse, "Can I do anything to help you?"

Ahh the smile that came across my face. This is why I married the Big Man. No, honey, you can not go back into the lab, throw on a white coat, and start stirring a big bowl of chemotherapy together like it's potato salad. But I love that you offered!

Thank you, Big Man, for being you and thank you for loving me.

Milestones

2010-06-04T18:30:00.004-04:00

TGIF! Today is a huge day for me. Well, actually, yesterday was a huge day for me, but the Big Man and I plan on celebrating tonight. He is taking me to see "The Great American Trailer Park Musical." I don't know what to expect, but whatever it is it sounds fabulous!

No, it is not my birthday. No, it is not my wedding anniversary. No, we did not get that puppy I want, although Big Man, if you're reading this, if you come home with a puppy tonight then you will automatically win every argument for the next five years!

Today is my "Cancer-versary". It has officially been five years since my breast cancer diagnosis! I am entering my sixth year of survivorship today! I am now officially on the winning side of that 20% statistic that I think about every second of every day. My goodness, gracious how far I have come in the past five years! I get a little bit shaky just thinking about where I was on June 3, 2005.

I was standing in line at Starbucks. I had graduated two weeks before. I was bright eyed and bushy tailed. The greatest worry that I had was what to wear to my first day of work. I had just spent some time shopping on Newbury Street for cute shirts to go under my boring black suit jacket. I needed a coffee because I had been sadly unsuccessful.

Everything I tried on suddenly seemed so "juvenile". I suddenly felt the urge to shop at Anne Taylor or Talbots. I bought my first ever pair of shoes from Naturalizer. In college, I had never left hip, cafe-and boutique-filled Newbury Street, but post-college, I had the urge to drive out to visit a large suburban mall.

I hoped that ordering a skinny, double-shot caramel macchiato might wake me up from this real world induced fashion coma.

That is a long winded way of saying, I was a totally typical college student. I did not have a care in the world, but if you asked me I am sure I would say that I was suffering some sort of major crisis.

My phone rang. It was my mother.

Momma asked me where I was. I told her Starbucks. Without taking a breath, I started into my big thoughts on the joys of sensible Naturalizer pumps. She clearly wasn't listening. Whatever she had on her mind she was going to say and there was no stopping her. She interrupted my Naturalizer monologue. She never told me, "Honey, you should probably sit down" or "Why don't you call me back when you get home", or even, "Go into the bathroom where it is quiet and you can talk privately."

No, no. Instead, while standing in line at Starbucks behind a young mother with a MacLaren stroller and several Burberry and Petit Bateau shopping bags, my mother told me I had breast cancer.

I hung up on her saying, "Listen, I just can't deal with this right now."

Now, five years later, I can deal with absolutely anything and everything.

This time five years ago, I was in my brand new Volkswagen Jetta, a graduation gift from my proud parents, driving eight hours home from Boston to Baltimore with my mom. I had, for some reason, packed only three outfits and a bathing suit. Who knows why I thought I needed a bathing suit for chemo. I had quit my first job before I had even started and instead of living with my best girlfriends, I was in the process of moving back in with my parents.

On the long, Batan Death March that was my ride to chemo, I was having a conversation with my oldest brother about why I should or should not tell my college friends about my diagnosis.

"Bridge, this whole cancer thing is going to be really quick. Just get this chapter behind you, and you'll want to go back to normal. If you tell everyone, you'll never be able to go back to normal. Bump in the road, Bridge, bump in the road."

"Dude, Bro, I'm going to lose my hair. How am I going to explain that one?"

Silence.

And just like that, my life was forever changed. Now, I tell my story to anyone who will listen.

Five years ago, my boyfriend of six months came to my parent's home for only the second time. He held my hand as my mother's hairdresser shaved my head. Here I am sporting my new look next to my dubious younger brother.

Five years ago, the GI Jane look worked for a bit, but then my hair started actually falling out. It came out in big chunks. The Big Man actually left a hand print on the back of my head after watching a movie at one point. The Big Man was both mortified and feeling incredibly guilty. So I quickly invested in an amazing wig.

Looks like I got the soccer mom look I had been hoping for on Newbury Street!

Now, five years later, that brave young man who held my hand as I shaved my head is now my husband and my hair is long and fabulous.

The past five years have been a long and painful few years. Nothing has gone as I expected, but the greatest lessons of my young but eventful life haven't been learned in the college classroom; they were learned in the hospital room. So here is what I have learned up to this point. These thoughts are the legacy from my first five years:

Your parents are your best friends. Contrary to what many of you might imagine, they will not be here forever and their presence in your lives is a gift. Let go of any petty drama or family arguments. If caring for your ailing mother is grating on your last nerve, when you have the knee jerk reaction to speak sharply or get exasperated, instead take a deep breath and give a hug instead. Your parents are the only people on this earth who know you better than you know yourselves.

The best thing that ever happened me was moving in with my parents after graduation. I did not just live upstairs. I cooked dinner with them every night, my dad and I went on dates, I got to know my mom as a friend and not a mother. I learned about their first jobs and their graduate school experiences. I learned to turn to them for good and sound advice, and to actually listen to their advice rather than thinking I know it all. We became the best friends we always should have been for the first 21 years of my life because we found ourselves in the unhappy position where we were all clinging to each other like survivors to a life raft. Please, do me a favor and become best friends with your parents simply because you are lucky enough to realize how precious they are!

I’ve also learned to stop spending my time trying to plan my whole life and setting certain goals to attain. Do not measure yourself based on the accomplishments of your peers. Life is too short to wish it away. Reflect on all that you have accomplished as opposed to planning for the next accomplishment. Focus on tonight rather than planning for tomorrow. Turn off your phone, computer, tv.....Instead, let go and enjoy where you are in this very special moment. I know I will really enjoy "The Great American Trailer Park Musical" this evening. What are you doing tonight? Whatever it is, put your heart and soul into it!

When I visited a doctor and he ran his hands through his hair and said, “I just don’t know what to do with you.” At that moment, I was forced to take stock of my life.

I task all of you to spend some time today, in my honor, taking stock of your lives. Don’t take stock of your career goals or material possessions. Take a look at your character and at your relationships. Take a look at the friends around you, because at the end of your lives, your relationships are what endure even after you are gone. Your relationships and your character are what matter and they are all that matter.

I have spent the past five years intensely focused on the relationships with the people I love. It has been the best five years of my life. I am looking forward to the next five.

Happy Memorial Day!

2010-05-31T22:39:00.002-04:00

Happy Memorial Day weekend, everyone! I hope you are all entering this short week well rested and, ideally, with a nice tan. It turns out, the Big Man and I actually had a great weekend.

Last Wednesday, after I cried "uncle" to my oncologist, I went in for a physical and some blood tests. Turns out, the back pain wasn't my only problem. My platelets, which help with clotting if you get a bruise or cut, had fallen even further and were in dangerously low territory. Low platelet count is considered anything under 100,000. If you are 100,000 and above, you are OK for surgery. Below 100,000, you need to be careful because no one will operate on you if something goes wrong!

My platelet count on Wednesday was 15,000. Not good.

15,000 platelets + horrible back pain = my doctors were eager to get me off of the pill, GDC-0941.

My docs said they had never seen these sort of side effects so quickly in other patients. Another patient had complained of back pain, and others had had trouble with blood counts, but I was the first to complain of both at once and so severely. So I was ordered to stop taking the pills.

Apparently, doctors are good people and like to follow, not only side effects, but also a patient's recovery from those side effects in these Phase 1 trials. This means, I am still allowed to be in the clinical trial! YAY! I am going off of the pills, but I am still in the trial. I will keep visiting the doctors regularly and I will still be closely monitored, but my only drug regimen is a chemotherapy infusion through IV every 3 weeks. My next TDM1 infusion is scheduled for June 9th and Mamma has already made plane arrangements. The Family is back and ready to fight!

This past go-round, I did notice that I have a couple of sick days after getting the TDM1 infusion. I feel flu-ish, sleepy, and run a fever, but I can handle a couple of low key days easily; I've been doing that for years. Bring it on!

So, armed with that good news, the Big Man and I went to a fabulous wedding this weekend. We gave lots of hugs and kisses and sage advice to the beautiful couple. We have been married for eight months and already know everything! I had to be a bit of a hypochondriac because of my low platelet counts, so the Big Man drove everywhere (to his utter delight), I was limited to only one glass of wine all weekend, and I was not allowed to cook all week for fear of a knife accident when slicing potatoes. We ordered in, snuggled up, and enjoyed our friends and good weather. This week, I am looking forward to kicking off the summer in good spirits. My back pain is gone, my energy is back, and I am so happy.

I will leave you all with a few thoughts on Memorial Day.

Thank you, thank you, thank you to all of the men and women in uniform and to the veterans among you. I was a freshman in college on September 11th. Hamid Karzai, the President of Afghanistan, spoke at my college graduation four years later on May 25, 2005. President Karzai spoke to my classmates and me just two weeks before I was diagnosed with breast cancer. Perhaps because of that juxtaposition of our war on terror and my illness, I think often about the sacrifices of our brave men and women in the US Army. I extend to you all today a heartfelt, personal thank you. Because of the work you do at home and abroad, I am safe and able to visit my doctor for treatment. Our country is at war, but so far, we have taken the war overseas. If the war were here on US soil, I would not be able to get the five star treatment and attention that I so desperately needed this week. I complained of pain and was brought in to be seen the very next day. That prompt attention meant my doctors found out immediately about my low platelet count. For 48 hours last week, I was being monitored constantly in case I should need a blood transfusion.

My life depends on the work of our military. My life depends on the amazing United States health care system, and my life would be in turmoil if we were not at peace here at home. Not a day goes by when I don't appreciate that. Thank you!

You May Have Won this Battle....

2010-05-25T17:55:00.002-04:00

I did not post this past weekend because the past few days have been really difficult for me. The day of the clinical trial was long and I came home and collapsed. The Big Man and I were at Dana Farber from 7:45 am until 7:00pm. We got breaks for lunch and a break from 4:30 to 6 so we made some time for a little blue plate special. We have been married for 8 months, but it feels like 80 years. Big Man gave me his arm as he helped me out of the car. We went to a place we knew well so we didn't even look at the menu. I may have ordered for him, I can't remember! We had juice and water instead of cocktails. The only thing missing was a perm and a cane.

Then we came home and I slept. I'm still sleeping, as I type this I am sleeping. It turns out "flu-like" symptoms can be code for really really killer. I have had excruciating back pain since Thursday. The oral chemo pills are causing the back pain, so unfortunately it is getting worse each passing day. I can handle one or two days of side effects, but to wake up each day and have the side effect get worse, with no end in sight, that is mentally and physically debilitating. To top it all off, I went in yesterday for blood work and was told my platelet count had fallen. I don't know what that means but the nurses asked if I've had nose bleeds. Now that is the one problem I don't have...and most certainly don't need! So today I did something I have never done before, I called my doctor and cried. I said, after only five days, enough!

I don't know what this means. I go in to see the doctor tomorrow. Perhaps I can stay on the trial and we can tailor the dosage? Perhaps I can stay on the trial and just get the one drug. Who knows? All I know is, I am emotionally and physically exhausted. My arms are weak. I am shaking. Just getting out of bed has been difficult. I can't sit up straight for long periods of time.

You know when people ask not to be kept alive on machines? This is what they mean. I don't want a life like this. Life like this isn't worth living. So, we're going to try something else. Cancer may have won this battle, it hasn't won the war!

So, I spent the past few days catching up on Grey's Anatomy's Season Finale. Ever since my diagnosis five years ago, I have become a huge fan of hospital dramas. I've never watched General Hospital, but it isn't below me. Grey's, ER, even Private Practice. I realize now more than ever that these are my people. This is my show. And it makes me feel good to watch people like me still manage to have love affairs and a spicy life. The hospital is my world. I'm a walking Grey's Anatomy, except I am not a surgeon, but that is a minor detail. And wouldn't you know that, yet again, Grey's manages to put it all into perspective for me. Not only was the season finale amazing television, but it made me feel better to boot!

My day could be worse. Even though I can't get out of bed without pain. Even though my husband cries watching me hurt. Even though I'm throwing in the towel after only five days. Things could be worse. There could be a crazed gunman out for revenge in my hospital. And there's not. So today is a good day, but tomorrow, when I am off these drugs, will be better!

Back in the Saddle

2010-05-19T18:24:00.003-04:00

Tomorrow I start my clinical trial. The Big Man is ready to go with me. We report at 8 o'clock and should finish around 5pm. I got my schedule via email earlier this week. The nurses actually fit in 20 minute bathroom breaks. The schedule reads "you may eat or go get fresh air now" in between scheduled tests, blood draws and drug infusions. Awesome! Then I get to go right on back on Friday morning for another full day.

Hopefully, everything will go smoothly and the side effects won't be too terrible.

I am a bit at a loss for words today. I just have my eyes on the prize. Since I am at a loss for words, which is quite the rare occurrence, I wanted to take this opportunity to lighten things up a bit here. I've noticed this blog is getting much too serious for my taste.

This is me 6 weeks after a mastectomy.

Now, I am not endorsing foolish behavior. That was foolish. And please don't tell my doctors. But no one got hurt and I felt damn good! Yes ma'am. I really truly know how to fall off a horse, or bull in this case, and just get right back up and try again. I did pretty darn well, thank you very much!

So tomorrow, I'm going to put on something cute, although probably not a skin tight dress, and I'm going to get right back up on the bull that is chemo and hang on for a little bit longer. Cancer has knocked me to the ground a few times, but it most certainly hasn't kept me from standing right back up and dusting myself off before trying again.

Have any of you ever ridden a bull? If not, I think everyone should try it at least once, but I would recommend wearing jeans!

I'm Back and Ready to Roll! I think....

2010-05-14T09:41:00.003-04:00

I'm so sorry I have not posted in more than two weeks! I have been taking some time for myself to get ready for this next chapter. Shortly after I got the biopsy results back, I called my doctor and pushed our appointments back a week. Then, I hopped a Southwest flight and went to the beach with Mommy. Sun, wine, board games (my favorite is Catchphrase in case you're curious) and lots and lots of good conversations. Just what the doctor ordered.

I felt badly leaving the Big Man behind but I think he enjoyed a few days of pizza and All-You-Can- Eat Wing nights with his friends.

When I returned, the Big Man and I joined some of my co-workers for an amazing night at Fenway Park. I was selected as the Red Sox Honorary Bat Girl when they honored breast cancer survivors on Mother's Day. We got to go on the field for batting practice. A bunch of the players signed a jersey that they gave me that had Bat Girl on the back. Yes, that's me with David Ortiz!!! Now I have both the Big Man and Big Papi in my corner in this fight!

It was a great day and I went on Monday to my doctor's appointments with a smile on my face, relaxed and ready to take on whatever was coming my way.

Turns out, I was not at all prepared for Monday. Monday became perhaps one of the most overwhelming days of my life. First off, the day started with a call from Sears Home Delivery, never a good way to start the day. They told me that the dryer I had ordered a month ago with my tax rebate wasn't going to be delivered as planned. The brilliant people at Sears did, however, deliver my washer and haul away my old appliance. I wanted them to hold off on delivering the washer until they could deliver the dryer, but that's just too difficult for them. They could either deliver the washer Monday or deliver the washer in June. So I either have a washer sitting in my living room for a week as I wait for the dryer, or I have a dryer sitting in my living room for a month. I chose the week.

And then, I went to see my oncologist to discuss keeping me alive for as long as possible. Is there something wrong with this picture here? Who am I and how did I end up with this life? For most people, the Sears interaction would have sufficed for a bad day....

But I digress, usually my appointments with my doctor take about 15 minutes. I allow an hour with time in the waiting room. This past Monday, Mommy, Big Man, and I spent almost three hours at the hospital. We were all so exhausted we couldn't even discuss the huge changes that were in store afterward.

I now realize that I was not prepared for how my life would change with this latest diagnosis. Five recurrences apparently puts you in a more....urgent...section of the patient population. I had my doctor's full and undivided attention but the overwhelming theme of the meeting was "There is no blueprint for how to treat you. We are going to do our best. We are going to have to change course a few times, but let's do our best."

I don't think I own a pair of pants that were big enough for the meeting on Monday. I was completely unprepared for the chaos that was about to ensue. Now that I have this liver spot, the options available to me change drastically. There are several standard therapies (aka therapies approved by the FDA) that we could use, but the doctor told us those standard therapies are not nearly as promising as what is available on clinical trials. The clinical trial drugs may be promising, but I really become a guinea pig and will spend most of my life at hospitals getting poked and prodded, and monitored and tested. Getting the standard therapy makes it easier to maintain a normal life, but (and that's a big but) the doctors believe the cancer is more likely to "present itself" again in a shorter time on standard therapy than on a trial.

See that sentence right there, that right there is what it means to not have a cure. I am putting on the biggest Big Girl Pants I own. I am gathering up all of my bravery and strength. I am giving up most of my life and my health all to gain a few wonderful, joyous, quiet, unmolested years with my hubby. But I am not doing these things and then closing that door. I am losing my health and my free time. I am being poked and prodded, and then I have to get back on the horse again when the cancer "presents itself". Are we tired yet?

So, we decided to go with a clinical trial. That was when the real chaos ensued. Applying for a seat on a clinical trial is a lot like applying to college. At first there were no "seats" open and we were going to have to wait a month or more to start a new regimen. Then, in the middle of our appointment, my doctor's pager started blowing up and the phone started ringing. Long story short, in about 2 hours we had changed plans and trials about 5 times. We actually left the office a couple of times, but the doctor ran after me with another 10 sheets of paper about another clinical trial that looked more promising. It was insanity. But good insanity I guess.

The decisions we were making were so tough, though. That's what was most overwhelming. I was choosing between:
hair loss and nausea
Four drugs or five
3 days a week at the hospital twice a month or five days at the hospital once a month.
Just really really tough choices with no clear winner. How do you choose? It's like a real life, high stakes game of "Would You Rather?"

Now that I have secured a seat in a trial that I "like", I have to begin all of the red tape with insurance companies and all of the preliminary testing that is required for the trial. I have spent every day this week at the hospital for at least a few hours. I am going back this afternoon after work for a brain scan, and when I'm not at the hospital, someone from the hospital is calling.

My trial is looking at two drugs, that have been shown over the past few years to offer patients significant time without disease progression individually. No one has ever taken the two drugs together. (TDM-1 and GDC-0941). The TDM-1 is particularly exciting. I have been on Herceptin for five years now and it has controlled my cancer well, but now it is clear with all of the recurrences that the Herceptin is no longer working. TDM-1 is a drug that contains both Herceptin and an incredibly powerful chemotherapy agent. The Herceptin locks onto my cancer and then the chemo goes to work killing it. This is a new type of Herceptin that my cancer has never seen before so it won't be resistant to it. We think it should work well. TDM-1 is given every 2 weeks by IV like chemo, the other GDC-0941 is an oral chemotherapy that I take at home most days.

The trial is a Phase 1 clinical trial which means they want to monitor me at the hospital a lot to see how much of each drug I can physically handle before the side effects get to be unbearable. FUN STUFF!

So, while these drugs are exciting and may offer me a few years of quiet, I am embarking on a treatment plan that will be leaving me sick. The trial, in it's design, is meant to make me sick.

Also, since this is a clinical trial and they have to record every tiny change in my blood or side effects, I have to go to the hospital three days a week for anywhere from 4-10hours. This schedule for the next few months makes working full time complicated, but my job is my life. I get so much joy from my job. I can not bear the thought of being sick as my full time job.

If I am going to fight this beast for decades to come, I need to keep the cancer in a box wayyyy over in the far corner of the living room that is my life. I also can't imagine dragging the Big Man away from his job and his much-loved tennis to be with me for hours and hours in fluorescent lighting around 80 year olds who are coughing. No, no and no!

I am hoping that I can kind of arrange my appointments for insanely early in the morning and then late in the day, so in the middle of the day I can be normal. I am also hoping the side effects don't keep me from driving myself to the hospital. I am not going to be a little Driving Miss Daisy. I don't want to be chauffered around. I want to be 26 and hop in my Jetta and put on my sunglasses and open the sunroof and pop in some Lady GaGa and drive my own darn self to the hospital! I then want to have the energy to go to the grocery store on the way home.

Are you all realizing yet that I may be slightly too optimistic?

But you know, you can't put a price on independence. Those small moments that so many take for granted, those make my world go round.

For now, I am still extremely overwhelmed. I will be overwhelmed until I get this new schedule under my belt. So please, I apologize if I fall off the face of the earth, but I'm just trying to hold my head above water. Love to all of you!

Results

2010-04-28T19:41:00.002-04:00

I just got off of the phone with my doctor and my biopsy results came back malignant. That spot in my liver is cancer.

As I mentioned before, bad things happen to good people. No matter how hard we pray, things don't turn out the way we had hoped.

How do I handle these results? I snuggle into bed with the Big Man and he strokes my hair, he kisses me, and we talk about how I really deserve a puppy. He also tells me the doctors must be wrong- I look too beautiful to be sick.

He is going to take me out to dinner tonight. Somewhere insanely expensive with slow service, cappuccino, and really good dessert. We are going to take a long, long time over dinner. We are going to hold each others' hands like we're afraid we might fall off the side of the earth if we let go. We are going to look into each others' eyes because we don't want to imagine a day when we won't be able to see the face we love so much.

After that dinner, we will be fine. We will be ready to fight. We trust the doctors. The doctors point blank said I have more than just six months or one more year to live. We are not yet at the stage where we talk time lines and statistics. They believe I still have a very long life ahead of me.

My life is just going to be so terribly difficult. There will be many more tests, and more pain, and many, many, many, many, many more drugs. But tomorrow, we will wake up and the sun will be shining. We will be in love and we will continue with this beautiful thing that we call life.

I may be sick, but I am still alive. Tonight we will cry, but tomorrow, I promise you, I will be smiling.

The Big Man is a saint. I cherish him. He is my angel. We don't deserve this.

So we are off to feel sorry for ourselves. I hope all of you can take tonight and look around at your husbands, wives, children, parents, friends. Hold on a little longer than is usual. Pull someone a bit closer. Thank God for a peaceful evening; not everyone is blessed with one tonight.

Thank You!

2010-04-26T09:22:00.000-04:00

Thank you, Thank you, Thank you, Thank you! Thank you from the bottom of my Big Girl Heart!

You all lifted me up on Friday. I was overwhelmed with kind words. I was overwhelmed, and I was humbled. I wanted to take this blog post as an opportunity to reassure you- your kind words and well wishes did not go unused.

As the only girl from a family of six, anyone will tell you that I am never alone. Also, in case you can't tell from the blog, I am slightly gregarious. Finally, I am Irish. I love telling or hearing a good story. There is no moment I love more than those fleeting moments when everyone is gathered around a table laughing together. Those are the moments when I can imagine that heaven really truly exists right here on earth.

So I rarely feel alone, is the point.

Except when I am in a sterile tunnel. In tunnels, be they MRI, CT, PET, whatever other acronym you want to name, it is cold. They have to keep the rooms cold so the machines run smoothly. Also, when they run those tests everyone clears out before the machine moves. That is when you know you're sick. You are left alone in the cold room and everyone else, everyone except the sickie, everyone healthy, gets the hell out of there.

I don't usually feel sorry for myself, trust me I don't, but this procedure marked my seventh major procedure in a year. I'm all set with sterile rooms.

So on Friday, as they wheeled me away from mom and wheeled me back into a sterile room, I could have felt alone. But I didn't feel alone at all. At that moment, I knew all of these people, some people I've never even met, were right there with me.

So, thank you.

The procedure is over, but it was a bit tough. The surgeon was very apologetic. Apparently, liver biopsies are not supposed to hurt, but it hurt like hell in my case. The spot was very near the surface, but was difficult to get to for some reason, so they had to keep striking the surface to reposition the needle. The surface of the liver is, according to the apologetic surgeon, a "pain center". That sounds very benign in doctor terms. In patient terms, I never want to have to do that ever again. I'm all set with that.

That said, the recovery was smooth as silk. The only real side effect was that I couldn't have wine with dinner. Instead, the Big Man and I helped ourselves to some sweets.

So thank you for making a difficult day bearable. Thank you for keeping me in your thoughts. No one wants to suffer alone. No one should ever suffer alone. I am lucky.

Now we wait. The doctors tell me I should have the results on Wednesday. And yet, I am amazingly calm.

I am calm because I am not alone. Thank you for helping me shoulder this enormous burden, sometimes carrying it all alone gets too hard.

Relativity

2010-04-22T22:54:00.001-04:00

This post is going to be difficult to explain.

The most difficult part of my journey to understand is the gray area. In life, we all strive for black and white. We like people to be either good or bad. We believe in right and wrong. We force people to choose sides. Perhaps one of the most difficult obstacles to overcome when faced with illness and death is the idea that bad things happen to good people. This fact challenges everything we logical human beings believe.

Life is full of gray. Bad people can sometimes act with justice. Good people do things with which we don't agree. We are conflicted. We don't know who to believe. Bad things happen to good people.

My latest scan results are a huge example of relativity.

I am always waiting for the other shoe to drop. Even after my doctors told me the scans looked good and no new drugs were needed, while my mother and husband and friends were celebrating and popping champagne, I was still "Debbie Downer". We don't know what will happen next. We still need to worry about my heart. Come on, guys, we're in it for the long haul.

Everything with my scans is relative. My scan results are not just one page. They are about four pages long. In each place where they say things are clear, they also discuss all of the centimeter and millimeter sized areas of "concern" or "suspicion" that have not changed but are still being watched.

For the past five years we have watched my liver because, when I was first diagnosed, the doctors saw a 3 centimeter spot that appeared to be cancer there. After 6 months of chemo, the spot in my liver disappeared. Then, six months later, the spot returned, but it was super small (less than 1 cm) and it stayed small. Well this past scan, the doctors saw a new spot in my liver. That makes two spots "of concern" in my liver.

This second spot was also super small. It was not cause for concern. But still....there were two spots "of concern" and the doctors wanted to discuss this. They wanted to "review it." We were told not to worry, and we didn't, but perhaps we should have.

Which brings us to last week. Last week, I got an unexpected phone call from my doctor. This tiny, insignificant spot somehow took my world and flipped everything upside down. The doctors wanted to biopsy my liver.

All of a sudden, in a space where we thought we had black and white, good and bad, clear scans, free time, health in the midst of illness, suddenly a shade of gray peeked in.

The Family suddenly rallied and circled the wagons. Plans were made. Flights were booked.

This liver biopsy is no small feat. The liver is dangerously close to the lungs. Although the biopsy needle is deep, I have to remain awake during the procedure. Tomorrow, at 6am, I will be wheeled into an operating room, but will not be put to sleep. I need to stay awake. I need to hold my breath each time the biopsy needle enters my body to make sure it does not strike the lungs.

This sucks.

I am having a biopsy of my liver tomorrow morning, Friday, April 23rd. I have been under the knife before, but it's always been my breasts, or my lymphnodes, or my ovaries.

The liver is a vital organ.

I am, uncharacteristically, nervous.

I have not even considered the results. My mind can't go there. I am just scared for tomorrow. My doctors say we won't know the results until Wednesday. I hope the results are negative. They have to be. My mind can't dwell on that yet. My mind is too full.

That is where all of you come in:
Please say a prayer. My Big Girl Pants simply aren't big enough right now. I can't wrap my head around this. While I am focusing on the surgery tomorrow, will all of you pray for me? Pray that this new spot is not cancer. Pray that God will give me a break. Pray that my husband and I can enjoy this summer cancer-free. I am tired. I need a cancer vacation, a cancer-cation.

Spring Has Sprung!

2010-04-13T01:38:00.001-04:00

Last week, I got out of the car in the pouring rain and saw a glorious sight. The tree I parked underneath, which I initially cursed because it was dripping all over my head as I struggled with groceries, instead suddenly became a sign of hope. There, on that bare tree, were thousands of teeny tiny little pink buds. So easy to miss, yet such a glorious symbol. Every year around this time, the world starts getting a little bit louder. I have been hearing birds each morning outside my window, and I can almost hear the sound of the flower buds bursting through the soil in our back garden.

This morning, those very same birds put a little spring in my step as I got out of bed. I opened the blinds and smiled at the sight of my newly planted window boxes with happy little yellow and purple pansies blooming. I admired my newly flowering tulips as I sipped my coffee in the backyard and, then, as I opened my Outlook calendar, the spring in my step turned into a verifiable leap of happiness. Today is my final inflation!

That's right, people, spring has sprung here in Boston....and so have.... my boobs!

The Girls are growing! Just in time for bikini season, the body that was Bridget is back and better than ever. I no longer just need Big Girl pants, I now also need Big Girl Bras! Now I should hold my joy back a bit, there's still a long way to go in this process, but I did want to provide everyone with a boob update.

Probably one of the hardest things about having a double mastectomy, especially at the ripe old age of 26, is that when you tell people you are having "a double mastectomy and reconstruction" they assume that you wake up with new boobs. Far from it, my friends. I've had to work for these here little ladies. It's been slow and hard and painful.

Even though I had been dealing with scars on my breasts for five years before I ever had my double mastectomy, and even though for five years I was taking hormone therapy that took my once C cup boobs and shrunk them down to a generous A, even though I had worked in breast cancer and seen mastectomy scars both in person and online, and while I was on some level afraid of all that my boobs had done to threaten my life, nothing can prepare you for that moment when you see your very own mastectomy scars for the first time.

Granted, my surgeon did an amazing job. Honestly, if there were a Heisman Trophy for mastectomy surgery, my doc would be a shoe in, but the sense of loss was unexpectedly overwhelming. It hit me in the gut...hard. I know in my heart I made the right decision, and since I've had the surgery, I've slept better than I have in years. I know I have done everything that I can do to keep this cancer at bay, but there are certain things with a double mastectomy that you can't prepare for. For example, in addition to the scars across your chest, you lose all feeling from your belly button to your collar bone. That is heartbreaking, and it serves as an everyday reminder of all that you have lost.

The grief I felt was particularly difficult over the past six months when I would try to resume my normal life. Behaving like a normal 26 year old is incredibly important to me. I will leave the chemo chair and go to a birthday party. I vividly remember leaving one of the most difficult appointments of my life where a doctor gave me some bad test results, and heading directly to a cocktail party. I could have canceled, but I figured, I don't know how much time I have left. I most certainly will not spend what precious time remains - be it 5 more nights or 5,000 more nights- in bed feeling sorry for myself.

Manicures, pedicures, shopping for the perfect dress or shoe, getting dressed up and being told you look great even though you just left the hospital, those moments have kept me hopeful and alive. Then, after the mastectomy, I didn't fit into any of my shirts. I felt ugly. I felt ugly, and no amount of make up was going to hide that.

Also, contrary to what the name of the procedure "double mastectomy with reconstruction" implies, I didn't wake up with boobs after my mastectomy. Instead, I woke up with expanders in my chest, empty balloons that will one day create boobs. A lot of my friends didn't understand that, at least not until they saw me.

Over the past six months, I have visited my plastic surgeon once a month and he has slowly stretched my skin and inflated those balloons in my chest. We have slowly recreated boobs. The process has been painfully slow, not physically painful, just mentally painful. I liken it to when you are growing out your hair- you just don't think it will ever happen.

My first inflation, I was scared about pain so when I got home from the plastic surgeon and surveyed the damage in the mirror, I wasn't bothered too too much. I was able to quell my disappointment at the fact that my chest was still just as concave as when I started that morning. But the next month, after the second inflation, when I still left the office feeling like a 12 year old boy, I started getting a little antsy.

I say I felt like a 12 year old boy in all seriousness. It was snowing that day, not fun Christmas snow but slushy, rainy, brown snow. I was wearing a gray newsboy kind of hat with a cute brim on the front. Kind of like what old men in Ireland wear. Except, when I arrived home after visiting my plastic surgeon's office that day, I made the mistake of surveying his handiwork in the mirror whilst wearing that very same cute gray hat. Instead of boobs, I saw pectoral muscles.

Instead of taking a deep breath like a sane person and realizing these are a work in progress, I saw my gray hat wearing, flat-chested body and saw myself as, for real, a 12 year old newsboy. Cue the breakdown.

But that was February. That was snow. Today is April. All of a sudden, out of nowhere, my boobs have bloomed. One day, I looked down as my doctor was slowly inserting the saline in my chest and I started to actually see boobs! Which brings us to my post today. It has happened! The Girls are back and better than ever! Today is a glorious day!

I still have to have two more major surgeries to finish my boobs, but today I just wanted to reflect with all of you:

Even though I should know this by now, life is a journey. Whenever you are having a bad day, take a deep breath and realize that tomorrow will be better. Spring will come. The sun will shine. And some day soon, you will have boobs.

Celebrations!

2010-03-30T11:36:00.002-04:00

Put the big girl pants away for now; they aren't needed this week. Instead, everyone raise a glass and toast my good health! Yesterday I saw my doctor and she told me that my scan results came back. There is no evidence of any new cancer. I have been given a clean bill of health!

I will be getting my next set of scans three months from now, sometime in July, which means I get to party it up and have a fabulous spring and early summer.

I'll talk more in future postings about how I have learned to live a full life in three month increments in between scans, but today is all about celebrating.

I have truly been given a new lease on life! Life is good today.

Tonight I am taking off my big girl pants and putting on my party pants. Momma, the Big Man and I are going out for a celebratory dinner. I invite all of you to join us in celebration. Thank you for your prayers! They worked!

Inspiration

2010-03-27T16:28:00.001-04:00

Ok Everyone,

As if scan time wasn't inspiration enough for me, I just received word of a 28 year old beautiful young spirit who was diagnosed with Stage 4 breast cancer. Allison is getting married on May 8th.

What is going on with this world????

I know my scans will be good. Let's send all the good vibes we have gotten from dancing and loving life Allison's way. http://www.facebook.com/group.php?gid=401096972787&ref=nf

Also, if you have not yet gotten involved in the fight against breast cancer, either with a Susan G. Komen Race for the Cure, a 3-Day for the Cure, or as my younger cousin at Dennison University did a "Bench Press for the Cure", get involved now. To do so, visit www.Komen.org. It can be as big or as little as you would like but this is an issue that affects us all. We all have mothers. We all have grandmothers. We all have aunts. We all have sisters. We all have daughters. Enough is enough now.

Rainy Friday

2010-03-26T09:03:00.010-04:00

This weekend is shaping up to be a Big Girl Pants kind of weekend, and this weekend is one of the reasons I started this blog. Today I will be heading in for my first set of scans since October. Scans are at the heart of the metastatic breast cancer journey. The fact that I need scans every three months is what it means to not have a cure. My doctors do the best that they can. My doctors are the best in this field. As one of my favorites put it, "we carpet bombed you" with chemo. We do the most aggressive surgery. We consider all options. And then, we wait and we watch.

The hardest part of scans is not having my morning coffee. As soon as I get out of that tunnel I make a beeline for Starbucks! I have to starve myself for 4 hours before the scan. The other annoying part is the sheer time I must devote. I have to arrive 90 minutes before my actual appointment time. I've never understood why they don't just schedule the scan for the hour when I have to arrive, but I'm not in health care. There must be some bureaucratic explanation.

When I arrive 90 minutes early, I am given a lovely little cocktail of Crystal Light and Barium. They are so nice as to ask my preference- Iced Tea or Fruit Punch. I've tried Barium with any number of things and unless its a stiff alcoholic drink strong enough to overpower the metallic taste of the medicine, it is no difference. I sit there for 90 minutes and drink three whole bottles of this stuff intended to coat my insides with "contrast". The Barium tastes like a mixture of metal and dirty feet. It's not so offensive as to make you get sick, but there is a gag reflex.

Now you may recall, I was diagnosed as a senior in college. While some may think that is incredibly unfair, I actually see that timing as a gift from God. Why you may ask? Well...I bring my college drinking skills to the table at scan time!

While all the other old ladies are sipping their contrast with straws, I take a deep breath and throw that baby back. The nurses tell me my nauseousness after the scan is over would be better if I sipped, but I'm young enough to still have my eyes on the prize. I'm 26, I'm allowed to throw caution to the wind when it comes to thinking about the end results of my actions. And so I chug. I want to go to Party City one day and find a pink beer bong and bring it with me to my next appointment. I can picture it now, I am going to be going down on one knee in my gorgeous hospital robe holding the beer bong up high and downing that Crystal Light in two seconds. Then I'll teach the rest of the waiting room!

After 90 minutes of waiting, you would expect the actual scan to be a big deal, but it is actually like that roller coaster ride at the amusement park. You wait hours in line and then the experience is way underwhelming and only lasts for .3 seconds. I have timed the CT scan, and it is never more than 10 minutes long.

But then the real waiting begins.

At the beginning of my cancer journey, when I first moved to Boston in 2006 and began going to Dana Farber, I would spend a whole day at the hospital. I had my scan in the morning, break for lunch and then go see the doctor for results in the afternoon. But then one time, the results came back bad. I had probably only been in Boston for 3 months. My hair was just sprouting. I was joyfully cavalier that I had beaten it. This cancer thing was just one year of my life. Just one horrible year. And then, the scans. I came to the results appointment alone. That was the last time I ever spent scan-time alone.

Since my journey has been so unpredictable and outside of the usual realm of cancer patients, my doctors tend to get creative with my treatment plan. Many doctors weigh in on statistics and treatment options and then my doctor and I get together and usually end up with a plan that is some where in the middle of the whole spectrum. I really enjoy being a partner in my care and knowing all of the options and all of the pros and cons. Well that first recurrence back in 2006, they saw the tumor in my liver grow. My doctor had just gotten the results minutes before my appointment and she came in unsure of how we would proceed. She had not had ample time to think about a game plan. It was an all around unpleasant experience because the news was bad enough but leaving without a game plan is enough to send me over a steep cliff. I must always have a game plan. Knowing that I have options keeps me sane.

So now, I get the scans on Friday and get the results on Monday. It makes for a difficult weekend, but my mom flies up to play with me and we fill our time with all sorts of fun things. This weekend, mom is teaching me to garden. We are also going to get the usual mani-pedi action. We have a list of shopping we need to get into on Newbury Street. The Big Man and I will take Mamma to our favorite restaurants. The days with mom fly by and I find that I forget about the impending appointment that could potentially take this beautiful life and throw it all to pieces again.

I don't remember until I'm sitting in the waiting room.

So everyone, enjoy this weekend for me. Get out there and take a brisk walk. Go to a party. Go to a hip restaurant. Dance. Have an amazing weekend. Love Life. Because on Monday, my life could change. I will of course update everyone as soon as I know anything.

The Ol' Ticker

2010-03-13T15:25:00.003-05:00

It's time for an update everyone! Do you have on your big girl pants?

So the most recent drama in Bridget-world revolved around my heart. My beautiful, loving, humongous heart. My heart is probably the organ I love the most because it conspired with me to make the best-wedding-ever a reality and it brought The Big Man, as he shall be known on this blog, into my life. That's The Big Man and me in Rockport, MA. See....isn't he friggin' tall?? Totally deserving of The Big Man title.

So, The Big Man and I both really like my heart. I think on a day to day basis I work out the ol' ticker pretty regularly with all the love that I send everyone's way. But, unfortunately, the chemo is not kind to my heart.

Five years of chemotherapy can take a serious toll on one's body. That is one of the many downsides of having metastatic breast cancer which makes it so difficult to treat and to beat. I will never forget the moment in 2005 when my mom, dad and I went to visit my mother's long time thoracic surgeon. This was shortly after the devastating cancer diagnosis and we were having a pow wow to decide the plan of action. Understandably, my clan was in full on fighter mode.

After making us wait for more than an hour, we were the only patients left in the waiting room. Here's a life lesson for all of you, if the doctor wants to make sure the office is cleared before seeing you, it's going to be a long and difficult evening. After a cursory exam he brought us into his office. He seemed flustered, also not a good sign. He sat down behind his desk. His office was the typical dark mahogany with framed diplomas everywhere, except there were stacks of patient records on every clear surface available. It must have been a defense mechanism that, after we left, all I could talk about was how I wanted to get in there and clear up his clutter; but I digress.

So he sat us down and launched into a long winded monologue. I don't remember much about the monologue except two phrases. The first, "This cancer is incurable." The second, "I want to be wrong, but I would be surprised if you lived to see 30. Yes, I could give you some drugs that will bide you some time, but I want to you to know that each drug might give you only an extra year or two."

The world started spinning. The only thing I knew to do was cast a side glance at my father. I will never forget the pain on his face.

I took a deep breath and started asking questions about clinical trials, surgeries, different hospitals with specialists. I pride myself on staying informed and educated. After my diagnosis I did the only thing I knew to do, I started reading books and medical journals. I wanted to stun this doctor with my knowledge. I wanted to challenge his hypothesis so that we could come up with a plan. But every possible solution or comeback I had, the doctor seemed to have an answer for it already. 20 minutes into this horrible conversation, Dad spoke for the first time.

"Hold on a second here. What do you mean, Incurable?"

I will never forget how his voice cracked and how he reached for my hand, but the distance between our two mahongany chairs was simply too great to grab hold.

In the past five years, I have learned so much.

Here's what "incurable" means. Once breast cancer is metastatic, it has spread to the bones, lungs, liver or brain, and no treatment or combination of treatments will be able to completely eradicate the disease. Although it may respond well to a given treatment, metastatic cancer will, in almost every case, develop resistance to that treatment and eventually grow back and spread. That is why a cure has been so elusive. Cancer is friggin' smart and over time on a certain drug, the cancer cells remaining in the body will figure out how that drug is working and find a work around. It's like encountering a traffic jam. The cancer gets stuck for a bit, but then the little wench reprograms it's GPS and goes a different route. There are so many millions of cancer cells in my body, eventually one of those teeny tiny little suckers is going to grow. When you catch cancer earlier, there are fewer cells to kill, so you have a higher survival rate. In the case of breast cancer, early breast cancer has more than a 95% five year survival rate. For metastatic breast cancer, the five year survival rate is less than 20%.

So, when the cancer progresses, another treatment is tried, and then when that treatment fails, another is tried and so on. This is referred to as "lines" of treatment. The metastases themselves and the different lines of treatment all cause side effects. I've been through several "lines of treatment", but I know there will be more lines to come. I plan on living a long life, but it's going to be a tough one.

It's been long enough that now, not only do I have to deal with the treatment and the cancer, but I also am starting to deal with the side effects of years of treatment.

In January, I found out my heart was failing. Good heart function is considered about "60% EF" or higher, whatever that means. The drug I am on, Herceptin, is known to cause Congestive Heart Failure, so they scan me regularly for trouble. For years my "EF" was around 60%. Then, in January, they scanned my heart and saw my heart function drop. My doctor called at 6pm on a Friday, never a good sign, and immediately ordered I stop my drug regimen. We wanted to see if my heart function would bounce back after a break. I got another scan of my heart earlier this month and my heart did not get better.

Which brings us to this blog post. This week I went for an echocardiogram and had a meeting with my new Onco-Cardiologist.

What is an Onco-Cardiologist you say? Well, Brigham and Women's Hospital and Dana Farber Cancer Insitute have teamed up to start a cutting edge department in their cardiology division, aka the division that treats hearts. This new program is looking at the toxicity of chemotherapy and studying how to prevent toxicity in the first place, how to detect it earlier, and how to treat it once the heart is affected by treatment. Exciting stuff!

The Echocardiogram

An Echocardiogram is really a fancy pants name for an ultrasound of my heart. Most women get ultrasounds when they are pregnant. It's fun and exciting and you get a print out of the baby for your fridge. I have never had one of those ultrasounds (I can practically hear The Big Man breathing a sigh of relief!) but I have had many ultrasounds of my boobies and my lymphnodes.

As of this week I was an Echocardiogram virgin. Now that I have had my first, I would say the Echocardiogram is the most like the pregnant ultrasound, which made me sad. They turn on the machine's sound so you can hear your heart swish swishing. I wish the swish swishing I heard this week was a little baby's, but alas that is not to be at the moment. Instead the goal is to keep me alive long enough to have little babies and hear their hearts on this ultrasound machine!

The Echo lasted about an hour and they pressed this wand all over my chest. I just had a mastectomy about 3 1/2 months ago so The Girls are quite tender, and by quite I mean really, really insanely tender, so the Echo was really not fun.

I then met with my new Onco-Cardiologist whom I love a) because he's easy on the eyes and b) because he's young and clearly brilliant. I am a huge fan of young doctors. When you are surrounded by elderly patients, it is refreshing to converse with someone in your same generation. I also find that younger doctors tend to treat me more like a peer than a patient.

My Heart Doc says that my heart isn't amazing, but it is functioning at an acceptable level.

Everyone, on the count of three, take a deep breath and then let it out with a smile!

I don't need any heart drugs quite yet, but my new heart doc does want to see me every three months and I have to go for an echo every three months too. I'm not too thrilled because the echo hurt, and it sounds like Heart Doc thinks my heart function might eventually get to the point where I need Heart Drugs. So I plan on exercising like woah to try to delay that moment.

Maybe one day my heart function will return to normal. Maybe it will be like a Lance Armstrong-style heart beat. When that day comes, I plan on getting a print out from my ultrasound and pasting it to my fridge.

**disclaimer, the echo pic above is not actually my echo. It's courtesy of Google Images. I'm saving my heart pic for the day when my heart gets better!

How Are You Doing?

2010-03-03T18:21:00.004-05:00

Think about the phrase "How are you doing?" Everyday, in every city across the globe, hundreds of people are asking that very question. Mothers ask sons over phone calls, girlfriends ask over a glass of wine, long lost friends connect over coffee, doctors ask patients as they give a pat down.

Sometimes, like during high school reunions, people don't really care about the answer. Instead of listening to the answer, the questioner simply prepares for when the same question comes back her way. But every once in a while this simple question is posed in such a way that makes the heart sing.

I notice a lot when people ask me how I am "doing" because I never quite know how to respond. When I answer the, "How are you doing" with the expected, "Fine, thank you and how are you?" I am almost always lying.

Five years ago, on June 3, 2005, I was diagnosed with Stage IV breast cancer. I was 21 years old. It was two weeks after my college graduation. I had no family history of the disease.

Five years ago, some people started to dread asking me 'the question'. Five years ago, some people I have never met and may never meet started asking how I was doing. And five years ago, for the first time ever, I noticed how wonderful and liberating it can be when someone asks, "how are you doing?" and really, truly wants to know.

As my new blog title implies, life with Stage IV breast cancer requires a pair of Big Girl Pants. If you're going to enter my world, you better put on a pair of your prettiest party pants and buckle them up tight, because my answer to "How are you doing?" is always long winded!

My long winded answers are what prompted this blog. For years, I've been filling people in on my latest adventures in cancer over coffee or dinner, at cocktail parties or in mass emails. I bring people up to speed in 500 words or less. Over five years struggling with recurrences, I am slowly realizing that my life will never be normal enough to sum up over dinner. Instead, life with Stage IV cancer means that every day major news is happening. Every month a new hurdle pops up. Every week a new drug is tried. Every evening we pray.

Sharing my story over dinner, over coffee, at weddings, is unfair for my friends and family and it is a disservice to the huge hurdles that I overcome every single day. I plan to use this blog to share those day to day struggles.

I plan to update this blog everyday, or at least once a week, with reflections on where I've been, updates on where I'm headed, and general thoughts about life and about facing down death.

In an ideal world, people will actually read this and share it as well. I am also giving birth to this blog because I want to raise awareness about living life with breast cancer. Not beating it, not surviving it, not closing that door, but truly, happily, sadly, thoroughly and completely living with it.

I joke sometimes about being scary. I really am not joking.

My story scares people, especially fellow cancer patients. I am the worst case scenario.

I was diagnosed way late. By the time someone sent me for a mammogram five years ago, the cancer had traveled from my breast to my liver. One doctor gave me a 16% chance of celebrating my 30th birthday. Over the past five years, I have had three recurrences and 5 surgeries. I have been on nine different types of drugs. My cancer just won't quit. The doctors can sometimes be quite grim about my "prognosis"

But I am living well. I am living fully. I am happy. I am one of the happiest people I know. I just got married in August (best wedding ever!!) and some days I call my husband in the middle of the day to just thank him for the amazing life that we have made together. I created a song that I sing (way off tune!) while cooking dinner about how much I love my little life. I think these facts can help people, even though my situation might scare you.

It is this happiness that keeps me motivated when life isn't very happy. This day to day happiness makes me a fighter.

So let's kick off this journey by sharing one of my most favorite-est pictures ever. This is me with Stage IV cancer.

Do I look sick to you?

Does it look like I might feel sorry for myself?

Now I'm off to a doctor's appointment and will update everyone shortly! I hope there will be someone reading.