Thursday, December 27, 2012

Refining Hope

Tomorrow morning I have my first appointment of the day at 6:45am on the second floor of the Dana-Farber Yawkey building. Given the winter storm that seemed, at least until a few hours ago, to be a bit of a wild card, we decided not to take any chances. At the last minute, we booked a room at the Best Western that is connected to Dana-Farber by a series of foot bridges (except for a few outdoor steps between the Jimmy Fund wing and the Longwood Galleria, unless we missed another bridge).

Brian and I tried to get the kids to sleep in time to grab a late dinner on the way into Boston, but of course Teddy would have none of that. Before my Mom, Brian, and I had finished our bread at Joe's, Teddy had broken Auntie Rachel down with hysterical tears and he had escaped from his bed for a seat next to Rachel where he could munch on Goldfish and watch TV. Rachel texted me, worrying that she was weak and we would be mad. I assured her that Teddy could break anyone. He did it to us before he even weighed ten pounds.

Rachel was also worried that we were stressed out because Teddy was so upset. I'll be honest; we weren't. We enjoyed our meal out together, knowing full well that Rachel can handle it and that at some point, even if it's four hours later, Teddy will fold (goodness, that sounds like me!). Plus, I think it's helpful for people that don't yet have kids to spend some quality time with them. Best to go into that adventure with eyes wide open, or at least as open as glimpses of parenthood will allow.

The Best Western's Inn at Longwood Medical is about as exciting as it sounds. The guy behind the front desk told us that it had been so quiet there that he was surprised to see us. I always knew how to find the hot spots in Boston. We laughed when we finally reached our room that was, no joke, as far away from the lobby as we could possibly get despite that we felt like the only guests around. We entered the room to a wall of heat. It had to have been 90 degrees in there and Brian immediately went to work on cooling it down.

Never a help in those situations, I headed for the snacks my Mom had packed (pumpkin bars) and a pack of cookies Kirsten had mailed to me (Tate's chocolate chips). Dee-licious, and totally earned since I sacrificed the Charles River Pie at Joe's for them. I know I've said it before, but the chemo steroids are unreal. Brian and my Mom are fast asleep (alternating snores) but I'm guessing that I have at least four hours of steroid-induced energy left in me. In fact, I'll probably be looking for more snacks again in an hour. I'll have to hide in the bathroom so the plastic wrapper of the cookie bag doesn't wake them up. How pathetic. Anyways, the drugs really do make me ravenously hungry. That hunger was part of why I backed off on my cancer-conscious diet during chemo. I plan to return to it, at least in some form, after the side effects of this last round subside, and I will do so relieved that the cheating has helped me return to my pre-diagnosis weight. Unfortunately, I won't be back to my handy cancer-fighting nutrition chart in a New-Year's-resolution type of way, but rather, in a I-really-want-to-be-here-to-make-other-resolutions kind of way. Don't worry, I'll still enjoy pumpkin bars and Tate's cookies. Just a lot less of them. Again, I have drifted. Or maybe I haven't even begun on my point. Either way, I move on.

I hadn't planned on writing a blog tonight since I know that these entries are usually ridiculously long stream-of-conscious blabberings (e.g., Halloween morning) or rants (e.g., about smokers). Nonetheless, I pulled out my laptop to surf the internet a bit. In order to get a wireless connection, I found the little piece of paper that the guy at the front desk gave us. Here it is:

Totally awesome. I wondered about who chose this password. A Best Western IT employee? The hotel's general manager? The front desk guy? Did he or she have any idea what that little word means to people like me? To those of us who check into this hotel because it's connected to the place that is saving our lives? Perhaps it was chosen by someone who visited Dana-Farber, the Brigham, or Beth Israel with a family member of his own, or for his own treatment. Or perhaps the IT gal chose that password with a purely empathetic heart. Maybe the word is one of many that have been dictated by a larger corporate policy. Yesterday's word could have been Christmas for all I know. But any way, it's a fabulous choice for me tonight.  

If all goes as planned, tomorrow will be my last and final chemo treatment. Two weeks later, I will feel good again, just like I do now. Then I will continue with the Herceptin infusions while I move on with my life. What's so unnerving to me is that I know now that life doesn't always go as planned. 

I've written before about how my fear of flying subsides when the pilot announces that we have begun our descent into our destination. I guess in a way, I should feel that sense of relief now because I am so close to being done with the drugs that will kill my cancer. But in all honesty, I don't feel any new feelings of great relief. In a way, it's a good thing, because over the last month or two, I have felt less and less anxiety and fear and more and more certainty that I will beat this. It didn't happen instantaneously, but it happened nonetheless. 

But the end of chemo is a whole new phase of this journey. After chemo, two of my main Allies will declare their job complete, their mission accomplished. Several people have asked me questions about when I will know if I am cancer-free and here's my honest answer -- I don't really know and I'm too scared to ask any more questions to find out. 

When I think about that question and that answer, I also recall two key conversations I had with Dr. Bunnell. The first was the awful one back in August when he told me that my cancer was HER-2+. I remember cutting him off when he tried to explain to me what the HER-2 protein can do. I couldn't bear to hear it. 

I also remember an appointment with Dr. Bunnell a while later when he explained more about the evil protein. I can't remember if I've written about this before and I'm too lazy to check right now, but Dr. Bunnell's drawing was one of a cell. He drew the HER-2 protein as a little barbell-looking thing that attached to the outside of the cell (the cell wall? no wait, I think I am remembering from high school biology that only plant cells have cell walls? anyways...). If I'm getting this right (always a big "if") once locked on, the protein converts the healthy cell into a cancerous one. I assume a tumor grows from there, but Dr. Bunnell didn't go that far with that dreadful line of the explanation. Perhaps being kindly aware of my request for solution-focused conversations, Dr. Bunnell explained that Herceptin's goal is to unlock the barbells and block the protein from attaching to the cells. To me, that is nothing short of a miracle, and just like I can't understand how a plane carrying hundreds of people can take to the skies, I can't understand how a medicine can unlock microscopic barbells and save me from cancer. So I have to return to the proof that planes do fly and Herceptin does work. Somehow. 

To be more specific on the Herceptin works point, in a recent (still unpublished) study to which Dr. Bunnell cited involving approximately 400 HER-2+ women with similarly sized tumors and treatment regimens, after a few years (I can't remember the precise number), cancer had returned in around five women. On one hand, I know those odds are remarkable, and I am grateful for that every day. I know of people who have faced odds far, far worse than mine and still kicked cancer's a$&. Those people are inspirations to me. On the other hand, however, I look forward to a day when a cure is a sure bet. Because I can't begin to imagine the pain suffered by those five or so women and their families. Actually, I sometimes do begin to imagine it, and I want to throw up. 

Dr. Bunnell has also explained to us that if my cancer returns, it will have metastasized elsewhere in my body, likely in my brain or on my chest wall (I hate that "M" word). It will still be breast cancer (which I don't really get), but at that point, I will be looking at palliative treatment, not treatment with "curable intent" as my chemo protocol notes now read. Of course, receiving that news is one of my darkest fears. Perhaps that fear will lessen over the next few years. But I have to say, I can barely breathe at the thought that after all this, my Allies could fail me. It is a suffocatingly awful thought that tomorrow's chemo may not be my last one. And that's why I'm thankful for the Inn at Longwood Medical's wireless password. Because in a few weeks, after my last chemotherapy drugs have made their way through my body, Hope will need to fill the void left by the absence of Taxotere and Cytoxan. In August, it will also fill the void left by the end of my Herceptin infusions. And five years after that, it will rise up the top of the Ally chain, because at that time, the Tamoxifen course will be complete and my body will be fighting the return of cancer without any other medications. 

Perhaps tomorrow in one of the visits by a member of my oncology team I will learn about what the next few years hold aside from the treatments I just referenced. Annual MRIs? If so, of what? My implants? My chest wall? My brain? Can't wait for those. I better save a few Ativan.  

So to answer the many questions I have gotten about how I will know if I am cancer-free, I will give you the answer Dr. Bunnell gave me when I asked the same question -- When, at 96, I die of something besides cancer. We all laughed at this response. Partly out of nervousness, partly because we appreciate Dr. Bunnell's unwavering frankness. Dr. Bunnell doesn't sugarcoat his answers, despite that frosting is my favorite part of any cake, cookie, or donut.

I can already imagine the demons that I will battle as my clinical Allies are replaced by less tangible ones. Will every headache I get be a tumor growing in my brain? Will every ache be the beginning of the end? I know this will be the long fight I face ahead. I just hope it's the biggest one. 

I consider myself one of the luckiest people in the world because, at least at this moment, I have that hope for a cure; the hope that I will see my kids grow up and have their own kids (if, of course, they so choose and aren't scared off by babysitting adventures like Rachel's tonight). I am blessed with the hope for more Christmases, anniversaries, fireworks, apple-picking, football and hockey games. The hope for an adopted child. The hope for more weekend mornings with absolutely nothing planned (then again, I've already learned that if hockey is in the cards for my kids, those types of mornings -- at least in the winter -- are not).  

My little book of quotes aptly entitled, Hope, and of course purchased at the Brigham gift shop, has a dog-eared little page that reads:

Through the centuries, we faced down death by daring to hope. 
-- Maya Angelou

You can probably tell by now how much I love Maya Angelou. She always has a way of saying so much with so few words (better yet, she is profound yet succinct, and if I was better about reading my A Word a Days, I'd surely have better vocabulary here). Nevertheless, "Through the centuries" reminds me that millions, if not billions of people before me have felt the way I do now. I am not alone. "We faced down death" tells me that hope is often found, or perhaps created, on the cusp of thoughts and experiences as frightening and dark as those I have spoken about above. And "daring to hope" teaches me that hope is a choice that I must make. That choice won't always be an easy one and likely, I'll fail sometimes. Hope will require that everyday and awesome kind of courage that I have also written about before. Because if I want hope, I'll have to dare to find it and then hold onto it. Luckily, even on nights like tonight when I'm the only one around still awake, and I'm scared, there are signs of hope everywhere. Even on little pieces of paper with passwords for a hotel room's wireless internet.

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