compliance
how we yield
The thing that makes treating the type of blood cancer that Chris has difficult has little, if anything, to do with the drugs themselves and everything to do with patient compliance. I have been trying to wrap my head around this for months because the seemingly obvious response when you find out you have a life-threatening type of cancer that can be treated “simply” by taking a pill (or in Chris’s case, pills, more on that in a bit) is generally something along the line of “fuck yes” or “phew” or “no way!” and every other iteration of that sentiment. What we think about treating cancer seldom looks like such an easy approach. Easy should probably be in quotations too but I am noticing a trend and maybe everything here needs quotes. So, going forward, assume they are there if it feels right.
The first thing his oncologist said to him when they were meeting and Chris was receiving his official diagnosis was that he has the good type of leukemia. Again, that probably requires quotes. Cuz let’s be real, no type of cancer is good. I am sorry to everyone who has felt in any way diminished or ashamed in their suffering because someone else has it worse off than you. How can we even begin to know any of that? Probably the way to say it and convey meaning with greater accuracy, as well as sensitivity, is to tell someone that they have a more, or highly treatable, form of cancer. Not better. Not good. Still sucks. I’m sorry.
Compliance is going to look different per the treatment, and as with most things medical, insurance is going to give you 1000 hoops to jump through, each of which is designed to make compliance as convoluted and difficult as possible. In Chris’ case, his oncologist initially prescribed a treatment that was one pill taken once a day, with no food or drink restrictions. Our insurance, which by any measure is pretty shiny, fancy, comprehensive coverage, said no to that and suggested another TKI inhibitor, the medication used to treat Chronic Myeloid Leukemia (the good leukemia!). However, the list of documented side effects was significantly longer with lower rates of efficacy than the one his doc had wanted. We pushed back against that and landed on a third option with higher and more immediate efficacy along with less significant side effects. The caveat with this third agreed-upon option is that it is two pills taken twice a day every 12 hours with no food or drink other than water two hours prior and one hour following. Ya got that?
So, compliance. What does that even mean? According to a quick 30-second search, vocabulary.com defines compliance as being flexible or yielding and giving in to a situation or order. "Pliant" is part of the word compliance, which means yielding. Agreeing or bending to something like a plan, rule, or direction is compliance. It can also be defined as the act of submitting or surrendering power to another. This should come along with a hefty trigger warning for most of us I would imagine, and I am no exception. My compliance to anything has been incomplete or lacking in big and small ways since I was fourteen years old. Even when I have wanted to be in compliance with something, my self-sabotaging function when it comes to any perceived or real yielding or surrendering of my power has almost always been at play. Wherever I could effectively apply will, there would always be an element of my resistance. It is a near-implicit aspect of my personhood. Sometimes this serves and sometimes it doesn’t and I am woefully aware of my inability to really know the difference.
What compliance looks like for Chris is waking up at 5 am to take dose number one and remembering not to eat or drink after 3 pm and until 6 pm for the second 5 pm dose. He must yield to the parameters of the clock. He must surrender completely to the structure of daily intermittent fasting, making sure that his alarm is set for the early morning wake up and also that he is well fed at 3 pm and can make it to 6 before eating again. Chris assures me time and time again that when your life depends on regular and consistent pill taking, you do it. You do not forget. And so far so good. It has been over four months and he has been completely compliant to his treatment plan and it is working beautifully. His levels are dropping even more quickly than the target speed and other than some elevated liver levels that his doctor is monitoring, he is responding well to treatment. He is feeling great, and is able to engage many of the things he loves in his active life and this is just the most affirming and enforcing outcome of his strict adherence to the plan.
And yet, he needs to keep this up for the next three to five years. Maybe longer. Maybe forever. I don’t doubt his ability to hold the course. But I do question how this unwavering vigilance wears on him. There have been these moments when he takes a sip of his electrolyte drink when he shouldn’t and questions the calories. The other day he confessed to having a piece of food stuck in his teeth and waiting to floss it out until after the fasting window closed. When I asked him why he thought he needed to do that, he expressed his concern about the calories and treatment efficacy and I was like dude you spit that shit out. Like you always do when you floss. But I could see in him at that moment the worry that he carries. The fear lurks just below the surface but is always with him. Fear that this won’t work, that he will not recover, that it will get worse, that the pain will bowl him over again. That he will die. That is a lot of value to place on a couple of calories taken at the wrong time.
Maybe he is right to place that value there. Maybe that is how he keeps the slope from becoming slippery. Maybe that is the grip he must maintain in order to comply. And I do not understand it simply because it is not me, not my body, not my life. But Chris in many, many, many ways is my life. I want him to be. I have chosen him and us and this and I will be compliant to this path whatever it takes. Even if it means I need to turn off my tendencies and my doubt and my questioning and adhere to the plan right alongside my beloved. I will keep watching and reminding and making side trips to the lacrosse field to make sure he has his pills on him, even though he never forgets. Even though he keeps himself all the way, 100%, in compliance.