Tuesday, December 7, 2010

The Dreaded D-Word

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.

Wednesday, November 24, 2010

My Blog of Thanks Giving

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!

Monday, November 15, 2010

What Not To Wear

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.

Friday, November 5, 2010

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!

Wednesday, October 27, 2010


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.

Monday, October 4, 2010

Susan G. Komen 3-Day for the Cure

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.

Friday, October 1, 2010

Wish List Updates

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!

Wednesday, September 22, 2010

The Ultimate Breast Cancer Survivor's Wish List

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!

Monday, September 13, 2010

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.

Wednesday, August 11, 2010

My Girls

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.

Friday, July 9, 2010

Enjoy the View

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.

Thursday, July 1, 2010

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.


Wednesday, June 30, 2010

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!