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.

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!

Victory!

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

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

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

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

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

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

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

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

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


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



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

Susan G. Komen 3-Day for the Cure

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

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



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

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

As they say, it takes a village.

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

That is OK.

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

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

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



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

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

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

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

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

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

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

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

And the finish line!

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

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

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

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

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

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

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

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

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

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

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

I thank you.

Wish List Updates

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!