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 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!