Dear Young A,
Yesterday Last week you turned ten. I was too busy waking up early enough to make you blueberry muffins for breakfast, and later baking and decorating your cake, and then getting through a week, to post anything thoughtful here.
Young A, you are turning into such a singular young person. You delight in things I either never appreciated or things I found hard to sit down and actually do at your age (like obsessive piano practice, or math homework). You are a source of surprise but also of constancy. You love fiercely, you don’t know your own strength, and you want to be on equal footing with pretty much everyone in the universe — whether it is appropriate that you be, or not. You received a complicated Lego set as a gift from Grandma and Pop-pop. You tore into it immediately, made a mistake early on, and got frustrated. But within a day you were dismantling the whole thing and starting it over. You got it right the second time. I wish you a year of growth, Young A. A year of avocado toasts (a favorite breakfast to make for yourself). A year of learning to play every piano piece your teacher throws at you at top speed. A year of doing your math more slowly to avoid mistakes. A year of learning to love who you are at this moment.
Young A, I still remember when I first started taking targeted therapy drugs. You were so little, just five years old at the time, but you needed to know what they were called and how often I took them and what color they were. This was a brilliant move on your part. You must have felt this gave you some control — perhaps you thought if you could name what it was that was helping me, if you could picture what the pink pills looked like, this might save me. And maybe it has. You have had a sick mom since you were three years old. I’m so sorry, Young A. Once you’re fully grown, maybe a therapist can help you figure out what that did to you, and what it meant. I’m hoping to be around too, loving you and marveling at you and as healthy as possible.
Last week, just as we celebrated Young A’s birthday, my eyes started taking a turn for the worse again. I saw Dr. H, the retina specialist, who confirmed that inflammation was starting up once again, this time in the left eye, and not just uveitis but potentially more swelling in the optic nerve, neuritis, which is trickier to manage and which could result in permanent vision damage. I had been taking the final targeted therapy combination that was available, Zelboraf and Cotellic. It now appeared this combo would also be destructive to my eyes.
Dr. L was informed and he responded by consulting with a group of colleagues across the world. I waited over a week for a call that would inform me whether I could continue on the therapy that was saving me from cancer… but potentially damaging my vision in the process. This week, while awaiting further news, I felt a bit like an astronaut who is out on a space walk when someone suddenly cuts the tether. Free-floating anxiety pervaded my days. I had a hard time focusing on anything because my mind was trying to recalibrate, but everything kept shifting. Every slight headache convinced me of my imminent demise.
This afternoon, Dr. L called. After hearing from his colleagues, the consensus was that I should not continue on targeted therapy, because the risk to my vision is too great. One colleague of Dr. L’s, a worldwide authority on targeted therapy, even suggested that I may have already gotten the full benefit of the targeted therapy drug, making it more likely to be safe to discontinue treatment. It seems more and more likely I am one of 17-19% of patients who are “complete responders,” and there is a chance the disease was knocked out before it could mutate beyond the reach of medicine.
I will keep having scans and bloodwork, but it seems as though my active treatment with drug therapy has ended. When I hung up the phone, I cried. It’s not bad news, and certainly not from the standpoint of my vision. I’m looking forward to life without the regimen of eye drops, once my current complaint resolves. For the latest round of meds I had to give up grapefruit and pomegranate and Seville oranges (meaning marmalade). Who knows? Maybe the universe conspired because it wanted me to keep enjoying these delicious fruits.
Long used to being the outlier in other contexts, here I am once again in a class of my own, blazing a new trail. But this phase of the journey won’t require much of me in terms of my own participation. When I had to take pills a couple of times each day, I had that moment of swallowing them to feel that I was an active participant in my own healing. What is left for me to do now as a cancer patient? Stalk the hospital portal for test results?
The hardest part of this whole enterprise now is how conceptual my participation will be. I bring the body to the checkups. I take the body to the lab for bloodwork and scans. I can make sure the body shows up on time and cooperates with what is required. I can have scanxiety. I can self-medicate with some alcohol. I can write about it.
While speaking to Dr. L today I asked him what mechanism might be in place to record my experience in a way that could help others. I need to know that some future patient, facing the same one-in-a-million eye issues as a result of this medication, might find something that can help their doctors get a handle on things. Dr. L said that within six to twelve months, he might be able to write up my case as a report for a medical journal. (If you are still alive in six to twelve months, he did not say.) I hope that happens. If nothing else, then I will be medically famous. (Anonymous fame, anyway.)
I’d love for a future human to come across my peculiar case in a journal search and recognize themselves in the symptoms and maybe be able to get help that much faster, because I already went through this — went through trying the different medications and giving up delicious fruits and fasting for three hours twice a day for years of my life, all to accommodate therapy that rewarded me richly with no disease progression… but ultimately tried to blind me.