Cancer: an endurance test you can't opt out of

 Hello friends,

I've decided to risk typing again, at least for a little while, because processing all the emotions of changing treatment turns out to be very hard to do for me without writing about it. Not much has changed since last week: my scapula is still fractured and painful, my results are still bad and show an aggressive cancer that needs a new treatment, and I'm still feeling unusually lost and hopeless in the face of it. It's reminding me of my earliest days of diagnosis, before I felt like I had a handle on the protocols and language of treatment, when everything was scary and I was preoccupied by the fact that my diagnosis meant that life as I knew it was over. 

I think this is because life as I know it now is, again, over. Every time a treatment stops working, life as I know it (and have made it) is over. This has been the hardest thing about cancer for me. Through a combination of hard work, optimism, and sheer willpower I have managed to make a good life for myself within whatever parameters my treatments have allowed me. Thanks to understanding colleagues I have not only worked full-time since my diagnosis (except for time off for surgery) but been promoted. I've kept up a social life, even with quarantine, with dedicated friends online and in real life. I've traveled and made plans for more trips. I've presented at conferences and been invited to contribute work to edited scholarly collections. I've continued, in short, to live the life I wanted pre-cancer as much as I possibly can. And it was damn hard. If it looked effortless, then you were fooled by my PR. (Not that I can blame you. I do my own PR and I'm very good at it.) 

The fact is that every time my treatment changes (and, to some extent, every time I get treated at all) I have to reimagine that life and to fight to have it, largely against myself. Because every time a line of treatment fails my first thought is the fact that I'm going to die from this disease. Metastatic breast cancer is 98% fatal so this is really just a statement of fact. It doesn't represent how long you get before that happens and, mostly, I choose not to look into the numbers because they are very bad for my case. It's my version of "don't look down"; how could I expect to keep living, or to enjoy any of it, if I knew how little time I was likely to have? But there is also a part of me that thinks this must all still just be a huge mistake. I cannot be dying! Look at how well I am doing! (The fact that cancer itself is totally painless and almost entirely invisible helps contribute to this impression.) I suspect that I will feel this way up until the very end, still expecting someone to show up and hand me a pardon--a better treatment, something to make triple-negative breast cancer if not curable then at least something you can live with indefinitely. 

Every failed treatment takes me further from the fantasy of the pardon. This time when I got the news I thought--along with my usual mix of emotions--that it really was time for me to plan to die. I don't have a living will (a huge oversight for someone who has had major surgery), haven't planned or pre-payed a funeral, haven't written a will or come up with instructions for a memorial. These are all things that are better done when you're not actively dying, and I'm going to run out of time where that is true. Some are things everyone should do. (We all should have learned about the sudden onset of illness and death from COVID; we should all write our living wills.) But it is so hard to contemplate a future like that. It goes against what I want to do, which is to keep behaving as though I have a future and a life worth building rather than putting in stasis or, worse, dismantling. 

If this puts me in denial about my prospects, well, then perhaps it's simply necessary for a stage 4 cancer patient to live life in some denial. How else would you do anything otherwise? I actually credit my choice to act as much as possible like a "normal" independent adult with making it possible for me do so for so long. A saying of my dad's is that "faith in the fact helps bring it about." I believe that I can continue to live like someone who isn't likely to die before 40, and so I continue to. Maybe, in some way, this will help me become someone who does not die before 40. It will seem impossible. I will refuse to believe I am out of options, and so I will not be.

The challenge, though, is that active resistance like this takes incredible energy. Because I was already in so much pain from my shoulder (misdiagnosed as tendinitis so that I had lived with the fracture for a month) and already full of dread of the "bad feeling" variety that is only meaningful in retrospect, I was crushed by this news. I took to my bed for a weekend, with a heating pad and "Gilmore Girls," the most comforting cultural object I have. (I don't even need to watch the screen; I know seasons 1-6 so well that I've practically memorized them, though season 7 is anathema to me.) The shoulder pain was intense, but more painful than that was my feeling that I just had no more to give. 

The exhaustion caused by pain, and by the difficulty of trying to do mundane things without my right arm while living alone, reduced me to crying and yelling from my bed about how I just wanted it all to stop. I couldn't believe I only got 7 months from the wonder drug that gave me such good results in March. It was too much to ask me to change treatments again, to go through the work of convincing myself that I could endure it because the only other choice--let the cancer get worse by doing nothing--was not a choice at all. It was too much to ask me to bear up under the pressure and research and choose another horrible thing to go through. It was too much to ask me to put my faith in the next treatment (and the next one) instead of just accepting that I was going to die pretty soon, maybe within the year. It was too much to ask me to have faith that I could go on.

Of course, I do have faith that I will endure. Because for me that is the only option. My mother came out to help me, which made a big practical and emotional difference. I have some hope for improvement in my shoulder. Since the scapula fracture was pathologic--caused by a tumor--the pain I was experiencing was bone pain that could also be alleviated by killing tumor cells. I had a radiation treatment yesterday, so things should improve in the next week or two. As for the next line of treatment, I get to choose between two aggressive chemo drugs (because aggressive growth warrants an aggressive response), eribulin and doxil. They will both be less easy to endure than what I have been treated with so far. This frankly scares me, not just for the physical experience that I don't want to go through (but must) but for what it means about being able to rebuild a good life as close to my normal one as possible. I worry that I won't be able to live alone. I worry about going on medical leave from work, feeling like it means I'll never return. It feels like the beginning of the end, moving on to a fifth line of treatment. (Conventional wisdom says once you've hit this many failed treatments nothing is going to work. But hopefully in this case conventional wisdom is bullshit.)

Right now I'm mad with envy at the number of normal people the world holds, people who do not have to perform this mental juggling act every 4-6 months and who can behave as if they have all the time in the world because, as far as they know, they do. The alienation I can feel is very profound, but I hope not to let it isolate me from the many people in my life whose love and support I count on. I need to know from them that I matter, that it's worth it for me to endure and push through and keep going not just for my own sake, but for others'. Because when my own sake isn't enough, that is something that keeps me going. 

In these weeks I must get through the fear, and the anger, and the grief, and the pain, and get to the point of reimagining and living my life as best I can. I know I will get there. But I also know I won't do it alone. Thank you all for being here with me.

Love,
Rebecca