Yesterday I started my clinical trial. I am one of 127 people in the world taking this particular drug, which targets a very specific mutation I am dealing with in my particular cancer. I felt a little daunted as I started -- trials involve lots of paperwork, lots of hoops to jump through, lots of bloodwork, and lots of "here's how we proceed" talks from various medical professionals -- but so far, so good. I have had two doses, and I haven't had to deal with any nausea or any other notable side effects yet.
The trepidation I feel seems to be at least two-fold. One reason is because this is such a rare drug (I am the first person my hospital has gotten into this trial) and still being tested, so side effects are still partially unknown. Of course, they always are to some extent, even with standard medicines, because each body reacts or responds to things uniquely. But when a drug is still relatively new, the list of possible side effects is long, and the doctors all seem somewhat apologetic because they can't really tell you which ones are usually "common" (not enough evidence yet) and which ones are less likely. The only thing I was told I could expect, with some assurance that it will indeed happen, is fatigue. Cumulative fatigue. Sigh. There are those words again, ones I got to know all too well during my first chemo sessions last winter/spring.
The second reason I felt gingerly going into this whole thing is my exhaustion level is already pretty high. I have been battling this disease for about eleven months. And yes, I just used the active word "battle" though I still struggle sometimes with the idea of cancer being a fight. I still try to hold onto the wonderful word that the Lord will fight for me, and I need only to rest. But eleven months in, I am starting to get why people use the word "fight" a lot more than I did at first. Every time something else happens -- the cancer spreads, you go through surgery, you get put on a new medicine or start a new course of treatment -- you sort of feel like you are taking a deep breath and stepping back into the ring to get pummeled. Quite frankly, it's hard. You want to say "could I have a break? Please?" but there isn't really any way to take a break when what you are racing is a mutation driven cancer that has broken free and spread to several places so far. You know the cancer is not taking a break just because it's advent-almost-Christmas and you're tired and cold and in the midst of a move. Cancer has no awareness and no politeness. It just is, and it's kind of an insatiable monster, and you have to do your best to stay ahead of it.
I am, after almost six months of struggling with neuropathy and about six weeks of recovering from brain surgery (and three weeks or so out from radiation), starting to catch onto my body's rhythms with this illness. Mornings are times when I need to ease into things quietly and slowly -- days I can't are the hardest. Late morning through early to mid afternoon, on my best days, I get some spurts of energy -- that's when I need to plan to engage life most and get some things done. As the sun starts to go down, which right now means around 5:00, I start to go down too. It usually starts with my feet. They are numb all the time, but as the night descends, they start to tingle more, and after a few minutes, they begin to feel stiff and cramped and painful. That just increases as the night wears on and they get worse. My hands begin to get more numb too. Mild to moderate headaches usually kick in around dinner time, though thankfully they are getting better and fewer and farther between. (I am telling myself that once my new kitchen is set up, and I am cooking more regularly, I need to do LOTS of crockpot meals so I can take advantage of the earlier part of the day when I feel better.)
Usually, somewhere between 6:30 and 8:30, depending on the day, I realize I have to fall over. I get into pajamas early and I climb into bed. Reading, even writing, are often still possible, but I can feel the energy leaking out of me as though I am a helium balloon descending from the ceiling. I get weaker and more tired as the night wears on, and I find myself beginning to nod off mid-sentence of whatever I'm doing.
Learning my body's new rhythm is hard from a practical perspective: I never feel like I have enough time in a day to get done what I want or need to do. But it's hard from an emotional and spiritual perspective too. It's hard because I feel like, at the age of 48, I am suddenly much older in body than those digits represent...I am starting to resonate with people much older than I am, and the limits that challenge them. It also hard because the "not having enough time in a day" feeling seems a faint echo of the deeper concern that my whole life is running out of time. That's a hard thing to think about or even talk about, including with family and close friends, but when you have an aggressive, late-stage cancer, it lurks in the back of your mind. On your hardest days emotionally (I've had several of those recently) it casts a long shadow.
I felt that shadow today when I was zipping quickly through boxes of papers, getting rid of lots of old things we don't need, a daily practice right now as we continue to settle in a much smaller space than we had before. I ran across a box that included letters and essays from the years we were discerning our call to seminary. I found papers in which I wrote, at some length, about my longing to become a spiritual director, something I've been re-thinking again lately. My immediate instinct was to want to look up programs that focus on it -- a year and a half ago, I was already starting to consider what my learning path and "second career" might look like once the sweet girl has graduated from high school in 2020. In the midst of smiling over the passionate words my younger self once I wrote, I suddenly found my eyes dimming with tears as it dawned on me that there may be no second career or new learning path on this side of the veil. That I have been praying hard for the Lord to allow me enough time to shepherd my daughter through the end of her schooling. That the "what next" and the vocational calling questions I've grappled with my whole life suddenly feel strangely different.
It's all part of being chronically ill and all part of learning new rhythms. I am grateful that my heavenly Abba walks with me through them. He doesn't just walk beside me, but before, behind, and all around me. I may have changed a lot this year because I'm sick, but his presence and his love for me never change. My rhythms may be different, but my roots are not. For that, I'm deeply grateful.