A Distinct Possibility

While I was enjoying last week’s stay at “Chez Hunstman” (kind of makes it sound like a weekend at the spa, n’est-ce pas?) one of my nurses came into my room to show me a few charts. The first indicated how my methotrexate levels were decreasing exponentially, as per usual. The second, a piece of paper I’m quite familiar with at this point, was my chemo protocol, literally a piece of paper that charts in detail my journey through every round of chemotherapy. It looks like a large tree, with several distinct branches or columns indicating possible routes I could be taking. She pointed to a column on the left side of the paper and indicated that I was doing well, moving right along in my protocol. My jaw dropped. My heart skipped. I shook my head and told her, rather firmly, that she was mistaken. My protocol was not, as she had indicated, on the left side of the paper. Rather, my protocol was the column on the right side of the paper. Let me explain the difference, so you can understand my shock a little better. The protocol that I’ve been following ever since I was diagnosed calls for six rounds of intense chemotherapy, each lasting approximately 56 days, before we reach the point known as ‘maintenance’ where the chemo is reduced drastically. The protocol the nurse pointed to on the left side of the paper called for only four rounds of intense chemotherapy prior to starting maintenance. The difference, while subtle, is profound to someone in my situation. It’s the difference between two intense rounds of chemotherapy. Keep in mind that over the last six months, I’ve completed two and a half, which means that the difference in the two protocols is quite literally up to five or six months of intense chemotherapy. Does the jaw drop make a little more sense now? This is not the kind of thing chemo boy takes very lightly. I told her to please, for my sake, go back out to the group of doctors making their rounds and correct the mistake.

Almost an hour later, the same nurse was back in my hospital room to clarify. Her news came as a shock. She informed me that my primary oncologist was considering at this point whether or not to switch my protocol from six intense rounds to four intense rounds. She apologized for her faux pas (I really should have been hearing the news from my oncologist) but said that it was promising, considering how well my body has been reacting to chemo throughout this process.

So I went to my usual appointment on Tuesday with my oncologist, still shaken up and anxious to hear from her mouth whether there was any truth to this rumor. She informed me that when I had originally been admitted to the hospital, the doctors had been very concerned that the cancer had already reached my central nervous system (CNS). I came in with kidney bean-sized lumps covering my scalp, as well as numbness around my mouth, both indicators that my CNS had been affected. However, they have never, in all the bone marrow biopsies and lumbar punctures that have been performed since that time, found any trace that my CNS has been affected. No sign of cancerous cells. I was originally put on a rather grueling chemo regime because of this initial fear that my CNS had been affected by the cancer. Unable to find any hard evidence that would support this, I was told on Tuesday that there is a very distinct possibility that I will be shifted to a different, less grueling protocol. When I pressed for a conclusive answer, my oncologist shrugged her shoulders. I’ve come to recognize this look and accept it as the inevitable answer for everything in chemo. “We don’t know yet. We need more time.”

It’s a small change, but profound for me. It would mean only one more round of intense chemo before starting maintenance. Potentially, it cuts off up to six months (and all kinds of unknown adventures like pancreatitis). And so, once again, I find myself living in limbo. I don’t know. I probably won’t know for another few weeks. And I sort of just have to live with that. I’ve braced myself from the beginning for as many as nine more months of intense chemo. I’m prepared for that. It’s daunting to imagine that it could be over much sooner. Regardless, I have to admit that it’s an incredibly flattering compliment. The fact that they are even considering this change in protocol acknowledges that my body (and mind and soul) have been performing amazingly, and responding very well thus far. So I wait, try to think positive thoughts, and prepare myself for every possible scenario. I’d fight it, but I’ve realized the only way to get through this rollercoaster with any small amount of enjoyment is to throw my hands up, close my eyes, and try to enjoy the ride, however it looks.