Tuesday, September 2, 2014

212 degrees

Anyone who is my Facebook friend undoubtedly has not been able to escape the fact that I am doing the Jimmy Fund Walk in 19 days. I admit, I'm kind of obsessed with it. Sure, I'm naturally inclined to over-enthusiasm, but this bout of it is serious.

I've restrained myself from writing about the walk here because I never want this space to be about money and I thought that if I wrote about the walk, it could start to feel like a solicitation. But tonight, I can't hold back. For the record, however, this post is not meant to request donations. This post is simply about the "c" word; not the "c" word those boys yelled from the blue Nissan Maxima on my 33rd birthday, but rather, the "c" word that rhymes with "pure." Yes, folks, this piece is about "cure."

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One of my favorite books is a tiny little book that I stole from my mom. It's called, "212° - the extra degree." It's one of those books you would find near the cash register at a store full of cute gifts, one that I usually pick up, skim, and put back down.

The book begins by explaining that at 211 degrees, water is hot, but at 212 degrees, it boils. As the authors explain, this metaphor "reminds us that seemingly small things can make a tremendous difference." I believe that, both for good and for bad, and I believed it long before cancer. Cancer, however, has shown me nuances of this metaphor that I never before knew existed.

I have been working on a blog about the difference between "curable" cancer and metastatic cancer for over a year. I chip away at it, then I fail, and then I start over. Weeks later, I chip away some more and then I think that everything I've written is stupid and I delete the whole thing. I don't know that I'll ever finish that post, so I'll just write this lazily imperfect one instead. Because I have things I want to say even if I can't find the perfect way to say them.

First, let's set the facts straight. For all that my doctors and I know right now, I have been cured of my cancer. That means that it is possible that my cancer will never return and I will live to be 100. Even as I type those sentences, I force myself to go back over them. Cured of triple positive breast cancer. That would not have happened ten years ago. I know how lucky I am. I also know that luck can change.

I have written about friends of mine who are battling metastatic disease. This means that their cancer has spread throughout their body and that as of today, there is no cure. These friends include women who were in treatment when I was and women who were years out of it. It includes friends with the f-ing HER-2 protein on their cancer cells and friends who were HER-2 negative. Lest I underestimate the power of recent developments, I must acknowledge that there are great medicines that can shrink tumors and drastically slow their growth elsewhere. But there is no way to rid these bodies of cancer for good. 100 years old is not a possibility for them. At least, not yet.

I often think about the 212° book in a context one may not expect: sure, it sucks to have faced cancer up close -- that's 211° of a whole lot of shitty-ness. But metastatic disease? Well, that's 212° of scorching hell. Not all the time, I hope, but far too much of the time.

I cannot speak for people with metastatic disease and it would crush me to read blogs and other pieces that they have written. For this reason and others, I will make my goal tonight small -- I will write about just one reason that I think it must be so indescribably hard to battle metastatic disease.

It must be so hard because we do not live in a culture that focuses on the present moment. Sure, we can find people and classes and places that emphasize it, but mostly, we are surrounded by a much more future-focused culture -- one where we plan months or even years in advance, where we "look forward to..." and "hope the day goes by fast." Focusing on the present moment is kind of like trying to eat well -- it's possible, but we constantly feel like we're fighting the tide.

People with metastatic disease do not have the luxury of plans like others have. They don't have the luxury of floating with any tide. Instead, they have to struggle to stay in the present moment -- the only one they know is guaranteed -- because future moments feel (and perhaps are) dreadfully uncertain. I lived in this dark, dark world for a short time -- five weeks, to be precise -- before I learned that my cancer may actually be curable. Those five weeks felt like sheer torture. No matter how far away I get from that time, and no matter how rosily revisionist I can be in my memory-making, I will never forget that terror. And I will do anything I can to help people who have to live in it for the rest of their lives. Or until we find a cure.

I will walk 26.2 miles on September 21st because I want the peace that accompanies hope to replace the terror that accompanies uncertainty and worse, the inevitability of cancer over-taking the body. I want Dana-Farber researchers to reach (or contribute to others who reach) a cure for metastatic cancer -- not just breast cancer, but all cancers. In the meantime, I want Dana-Farber to provide the very best care for patients and family members who walk through their doors. I chose the Jimmy Fund Walk over other walks because Dana-Farber focuses half of its mission on research and half on patient care. I like that split. Because I know how scary it is to walk through those doors and I know how much relief comes with hope.

Yesterday morning, I walked eight miles -- a laughably short distance to prepare for 26.2. I woke up this morning so sore that I skipped my morning workout. As my hips and knees ached all day, I was reminded that 26.2 miles is not going to be easy for me or for anyone on our team who has set out to do it. But I also know that it's a small thing I can try to do to dial back the 212° of pain that metastatic cancer patients endure every day.

Ultimately, I know I've become more than a little bit obsessed with this walk. But maybe that one extra degree of obsession is just what we need. Maybe we're at 211° and at 212, we cure cancer.

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