Counting My Blessings

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.

A Huge Blow

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

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"

Scan Results

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!

Scan Results & their aftermath

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!

Fresh Fall Start

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.

I Think I Might Be Winning!!!!!

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

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!

Celebrations!

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!