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

How to keep going?

 Hi friends,

I could not be writing a more different update after my June scans that last time. It's also going to be incredibly short, because I am typing with a fractured scapula. There's no good way to say that my June scans showed substantial progression--some of the worst ever, definitely the worst since I had the tumor out. This is shocking because when Saci was working it was working SO well. But it stopped.

Cancer is smart. It adapts and changes very quickly. Triple-negative cancer is the most aggressive; it grows faster than any other. And it's been growing. Everyone is concerned to get me onto a new (fifth) line of treatment quickly, but it's a little less clear what that should be. We're basically just heading down the list of chemos now.

It's not an exaggeration to say that this changes the overall likelihood for my survival. Saci is so new that we had all hoped it might turn into a long-term option for me. Instead, I got precisely the median time in the study (7 months). 

Even if I could type, which I really can't given the level of pain this causes, I don't know what I would say. It's an especially hard time and is going to take a lot of reassessment. But I do know that people what to know how I am, and that I must share the bad news with the good too, so here it is.

Be well,
Rebecca

Cheers to Hope

Hi friends,

I had the shortest wait ever for scan results and am happy to tell you that it was GOOD NEWS! All the existing lesions got smaller and there were no new ones. This is better than "stable" and better than I had hoped for. I don't have much to add, except that I invite you to raise a glass on my behalf and to drink to hope.

Love,
Rebecca

Hope is Risky: Scans and Vaccines

Hello friends,

I'll post with the actual news I receive on this too, but wanted to say that I'm going in for my second set of CT scans on this latest treatment tomorrow (3/12). For some reason, I'm much more overwhelmed with anxiety (or "scanxiety") than usual. It could be that, in December, I had total faith that the treatment I was doing would be better than the basically nothing that the previous one had done. It's not hard to show improvement on a result when the result is so negative. I was also distracted by the fact that days later I was set to travel home to the welcome prospect of seeing my parents and being able to cope with whatever happened in the arms of people who loved me. (And also I was distracted by my beloved cat, Percy, who I could tell was dying at the time and whose health honestly took mental priority over mine. I got good scan news on December 18th and he died on the 24th so I think it was the right call.)

Now, though, I've been through another four treatment cycles (8 infusions over 12 weeks) and haven't had dramatic signs of anything changing the way I did when my hair immediately started falling out. And while I in no way miss the large and terrifying primary tumor that I had removed in July, it did serve as a reliable indicator of whether treatments were working or not. since I could quite literally feel it getting larger or smaller (usually larger) over each passing day. Now, the distant cancer sites are all invisible. All my tumors, as of December, were under 1cm. That's a huge change, considering that the final size of the primary tumor was 12cm. I'm glad not to be able to see them and glad the relative size is so small. But it leaves me completely unable to tell if anything has changed or not. The side effects aren't useful in this way either, since despite what I might feel about my hair loss they're actually not correlated with effectiveness. 

It's an unfamiliar position for me to have so little to go on from my own body and it's leaving me rattled by uncertainty. I've swung between optimism--and there is a basis for it--and terror. The same things that make the outlook good for tomorrow, like the overall effectiveness of this treatment in trials and the fact that it's the only targeted drug for triple-negative breast cancer, make the prospect of a bad scan result even more terrifying. This treatment is not my last option. But it's my last really good option. (Although, yes, I agree that the "good" option is whichever one works. It's all about how likely that is.) I want to believe that good things are possible with it, but as soon as I do I tend to panic. This is essentially the same way I have been feeling about the covid vaccinations and promise of some return to normalcy (or a new version of it - I'm firmly of the belief that everything is profoundly changed so I don't even like the term). 

I think the intensity of my anxiety this time is about more than cancer and has to do with having these scans at this particular time in the pandemic. Social media constantly reminds us we are at the one year mark. March 11th was the last day I spent in the office, not knowing it was my last, although the rest of my coworkers were there on the 12th while I was at chemo. (I'm experienced with painful anniversaries and I urge you to get a cake for this one because at least then you are sad and shaken but with cake.) Unlike most people, though, I'm incredibly familiar with my life changing suddenly, profoundly, and for the worse. I do not (and won't) write about it here but the end of my marriage was traumatic and also characterized by abrupt changes that could not be reversed. That was in 2017-18. After that, I had my cancer diagnosis in 2019. And then the pandemic. Each case was one of loss, grief, and ultimately resilience. Each time I have made of my life what I can, but it's always been in the context of deprivation and pain. So when I contemplate news, or a change, a big part of me cannot imagine that it will be good. 

It's unexpectedly hard to open yourself up to hope. Hope is terrifying because it relies on vulnerability. And we who have been repeatedly wounded over the past year, whose hope became so faint that it was just a dim glow, are skittish and suspicious, understandably inclined to jealously guard what we have left. Will you spend some of your supply of hope believing in something better? I ask myself this every time I approach my scans, and now each day when I read about the pandemic.

I have had my first vaccine shot. I don't want to go into how hard it was to get an appointment. All I can say is that the only reason I succeeded at all was because I am fortunate to be part of a caring and proactive community (or several!) who pulled together to work on my behalf. It should absolutely not have been that difficult and we need to do better. But. It does mean that soon (the day before my 37th birthday) I will get a 2nd shot have as much immunity to covid as it's possible for me to have. Soon I will know the results of these scans. Maybe they will be good. Can I risk hope? Can you?

There's an episode of "Buffy the Vampire Slayer" (it always comes back to that, doesn't it?) set on an alternate timeline where Buffy never came to Sunnydale. It's as bad as you would expect, in fact Buffy herself dies in that world, as do all the characters we've come to love. At the end, it's Giles who reverses the spell by breaking an amulet. "As he prepares to smash it the villain (who will later become one of the Scooby gang, but that's neither here nor there) tries to stop him by asking, "How do you know the other world is any better than this?". He replies simply, "Because it has to be." 

This is how I have felt, to this point. What comes next must be better. Because it has to be. I'm scared to hope, but this same capacity for hope is the thing that has sustained me. If you're also feeling this tension, and also suffering from the pain that comes from having numb optimism reawaken like a useless limb, you are not alone. 

I hope we will talk to one another about the difficulties, as well as the positive things, about making a recovery from this severe trauma we have collectively suffered. And I hope we can have compassion for people like me, who are finding it somewhat hard to hope in the midst of all that has happened. It is worth practicing and I will do so--about tomorrow and about the pandemic--but I admit my fears and doubts as well and hope that some of you will feel free to do the same.

I will share news with you when I'm able.

Love,

Rebecca

Not Dead Yet!: Marking my 2-year anniversaries

On Sunday I marked my two-year “cancerversary” of my diagnosis and on Tuesday a member of the support group I co-founded (for young women who are stage 4) died. Like me, she had triple-negative breast cancer. Like me, she was diagnosed stage 4 two years ago. Like me, she had exhausted several types of treatment (because triple-negative is a beast) and was looking for the one that would work. She asked me about Saci (Sassy!) and proposed trying it to her doctor less than a week before she died. Nine days before she passed she joined our Sunday cancer yoga group from bed at the hospital to join our meditation exercises. Like me, she remained confident and positive and absolutely refused to give up hope. (Like me, she also wore her hair purple sometimes.)

There were many things that are unlike about us too. She had two teenage children who now don’t have their mother. She was twelve years older than me and had had Hodgkin’s before she had breast cancer--even worse luck than mine, to triumph over one cancer only to get this diagnosis. Unlike me, she wasn’t strong enough for Saci, the only targeted triple-negative line of treatment, because her body had reacted badly to immunotherapy. She was in the hospital for two weeks with somewhat mysterious symptoms all of which added up to her body shutting down. On Saturday she went home with her family in hospice care. 2 days later she was gone.

It’s not usual for things to go so fast. Typically, doctors, patients, and family members all have some advance warning and patients spend a solid amount of time in hospice care. I am sure that people will ask me why it went that way for her. I’m asking myself why too, since it is so shocking and so entirely unfair. The fact that it can happen that way at all is frightening to me as a fellow patient since it’s the scenario of nightmares. That really could someday be me. No one ever wants to think that--and I cannot live my life focused on it either--but it has to be acknowledged as a possibility. 

Today, January 28th, is the 2-year anniversary of my stage 4 diagnosis. In a way, it feels more significant than my initial cancer news. I had four days being horrified, but thinking that I would get through this as a phase in my life. It would be terrible--I’d have a double mastectomy, scorched-earth chemo, radiation, anything to get rid of the cancer--but then it would be done. On the Monday following my first set of CT scans I learned that that was not true. My lungs were full of tumors. (Later, after lots of waiting, MRIs and biopsies, I'd find that my lymph nodes, spine, and liver were affected too. I still have tumors in all those locations, but no new ones.) I wrote a description of getting that news in an email to a friend over the summer, after I had read Anne Boyer’s "The Undying”:

“The worst part about the lung tumors for me was that my dad had gotten a very early flight and I learned the news while he was in the air. My mom told me we could not text or tell him on the phone, that he would need to be with us both. So I drove to Newark straight from the doctor's office. It was in the teens outside and windy as we slogged to the baggage area where we were to meet. I saw my dad in his warmest and ugliest puffy orange down jacket, looking small in it, forlorn and horribly vulnerable. I fell into his arms, thinking at least that airports were such horrible places, so impersonal and banal, that no one would look twice. 'It's in my lungs,' I said into his shoulder so that I would not have to see his face. I was crying into the jacket that somehow smelled of winter cold even though he had been inside for hours. 'Please, Daddy. Fix it, please.' I spoke like a child because, on some very deep level, I think I really did still believe that my father could fix anything. I was embarrassed, though, and so I tried to stem my tears as he put his big hand on the back of my head and said, 'Oh sweetie, we'll get through this. We will.' I knew that really he could do nothing--and that this was his nightmare of powerlessness--and so I sniffed and blinked and I did not let myself cry again until June.”

Two years later this moment seems as if it just happened. The impact of my diagnosis on everyone dear to me, and especially my parents, is one of the worst things about it for me. We all know that there’s only so much “better” I can get, with the current science, and we’re all playing for time while the research moves forward towards something better, something that would make this a treatable chronic condition. I go back and forth, emotionally, on how likely I think that is and how good my position is for the future. Right now, comparing myself to the group member who died, I feel relatively fortunate, even as chemo exhausts me, I lose every scrap of hair that was ever on my body, and I spend half of my days being almost unable to eat from nausea and loss of taste. I feel glad that I was able to get Saci, that my body has so far stood up to the ceaseless trials I have put it through, with four treatments and surgery (and full-time work and living alone etc. etc.). I feel strong, not scared, even as I feel the emotional toll of terrible loneliness from covid isolation, winter, and carrying a sick body through my days alone.

I do not love the “fight” metaphor because so much of having an illness is completely out of your control and I never want to take myself (or anyone else) to task for “losing.” And so instead I will praise my body for enduring. I will praise myself for my enduring also, in both an emotional and physical way. I checked back in on how I was feeling as this anniversary approached last year and was pleased to see how much better I feel about it now, partly as a function of being in a treatment that is (likely) keeping me stable rather than in the midst of choosing another new one. Here is what I wrote back to my group of friends in November 2019, the run up to the one-year mark:

“I’m feeling like I can’t plan and don’t want to celebrate, like I can’t perform “fine” for the people in my life to spare them from the pain I’m causing by not doing better and feeling horrible about it. Perhaps it would help if I let them know that they didn’t need to perform “fine” for me? I understand the desire to protect me from the obligation to take care of them and appreciate it. But sometimes it can feel like I’m the only one experiencing anger or grief or pain, though I know I’m not. Feeling so isolated in my emotional response provides no catharsis for it. Compassion and sympathy function on the notion of “fellow feeling.” If you’re just out here, feeling by yourself, you can’t expect any comfort. As always, I think of the moment in the Iliad when Priam and Achilles cry together over dead Hector. Grief (and you can grieve for many things aside from a death) is something explicitly to be shared.”

So I guess I’ve shared it here. I can do that. And I can do another thing, which is to tell you I love you. People don’t really say it enough and reserve it too entirely for romantic contexts. It’s weird--it’s not like we are wartime rationing love! And every time anyone says it to me it helps. It’s an affirmation that I am integral in some way to people’s lives which, in a society that so greatly valorizes marriage/partnership and children, is something I can be in doubt about.”

There are some things I like here, though, and that I would now like to reiterate and invite you, my far-flung friends, to do for my 2-year milestone. Never has the notion of “fellow feeling” in times of grief and depression hit harder or been more important than during covid. In a way, the nation (or even world) was forced into much the same position, emotionally and practically, that my cancer put me in. People are isolated, unable to perform “fine” and wondering if other people feel the same way, or even if any of us can take care of each other at all. I am here to tell you that you can. Maybe not immediately but--sooner than you think--you can. Emotional reserves may be low but reaching out to support someone else can actually replenish them. You do not have to feel alone, or to feel, alone.

And for me, for this milestone and for the cancer-related depression that I certainly do have, I’d like to invite you to help me, so that I can do the same for you. I invite you to write something about how this milestone feels for you (either about me or not), how it relates to all the other insane things going on in the world or with you (not about me at all), how you felt on the original day when I shared my stage 4 diagnosis (definitely about me)--really anything that is on your mind or in your heart.

“Oh great,” you may think, “the English PhD has asked us to do homework!”. But no! It's up to you what you do. Write in whatever form you want, however long, even anonymously. And if you do I will write you back! Not with grades or comments, but with something to connect to what you shared. It is a way to create fellow-feeling; to open up, connect, heal. With me, yes, but also as the group of extraordinary people who have gone with me so far on this hard road. It’s a very different proposition to support someone through time-limited treatment with a good outcome than it is to sign on for whatever comes next. You are all, truly, pretty extraordinary. 

Anyone who wants to send a note or reflection can email me or drop a file or post in this Google drive folder. Like I said, feel free to share whatever and do it anonymously if you’d rather. You can also message me on Twitter. (I'm taking a chance with open DMs for now...we'll see if that needs to change.) 

I am grateful for all of you every day, but especially today.

Love,
Rebecca

p.s. The title of this post refers to the cinematic classic "Monty Python and the Holy Grail," a film my high school self and friends loved. They, along with other wonderful folks. gave me a "cancerversary" cake with "Not dead yet!" on it this Sunday.

Brighter from Here: 'Tis the year's midnight, and it is the day's

Hello friends,

Happy Solstice! When they were younger--before I was born--my parents used to throw a solstice party. They served things that were spiny or hard on the outside and soft within (pineapple, coconut - Mom makes a delicious ambrosia) and celebrated the passing of the shortest day and longest night in the company of friends. I'd like to mark it here with you. I had hoped to have time, space, or energy to write a post that reflected more on the idea of the long night and of the distance still to travel from the dark. Maybe later. For now, I have two things to share with you.

The first is a piece of good news: my most recent scans were good enough that I am able to stay on this treatment! They weren't a miracle cure--it's more stability than anything else--but since that is better news than I have had since June I will take it. And it is a relief to know that I did not lose all my hair only to change immediately.

The second follows at the end here. It's one of my favorite poems, John Donne's "A Nocturnal Upon St. Lucy's Day." I'd like to write you either a long explanation of why I love it so much or an analysis of it as a beautiful piece of poetry (and I'm more than qualified to do both). But time is short, so instead I will share the lines that I recur to most often and have, in other winters, at other times, through my cancer treatment, and through this pandemic: "He ruin'd me, and I am re-begot/ Of absence, darkness, death: things which are not."

It has been a year of cataclysmic global and small personal losses. It seemed sometimes that loss was only thing that could be around any corner. I think of death every day, whether it is my own, those in the news, the ones I fear for my parents, or the fast-approaching one of my companion animal. Even as I write this I am staying up late because Percy, my aged and beloved cat, has chosen to sleep on me and he's ailing so quickly that any time he does this might be the last, especially since I leave tomorrow for a 2-week stay in St. Louis. For me the risk of travel was worth the reward of a Christmas with my parents, who I have not seen for six months (since they came to take care of me after my surgery). The combination of their ages (81 and 76) and my cancer means that this could easily be our last opportunity.

I've said before that a year (or however long it takes to get this health crisis under control) is longer in my life than in most people's. But it does not mean that "absence, darkness, death: things which are not" don't haunt all of us. And though tonight and in the days to come we may sit at a vigil--for Lucy, for the light--we must know that she will be back. So I welcome you to wait with me, and to watch for the light. 

Love,
Rebecca

A Nocturnal upon St. Lucy's Day 

'Tis the year's midnight, and it is the day's,

Lucy's, who scarce seven hours herself unmasks;

         The sun is spent, and now his flasks

         Send forth light squibs, no constant rays;

                The world's whole sap is sunk;

The general balm th' hydroptic earth hath drunk,

Whither, as to the bed's feet, life is shrunk,

Dead and interr'd; yet all these seem to laugh,

Compar'd with me, who am their epitaph.

Study me then, you who shall lovers be

At the next world, that is, at the next spring;

         For I am every dead thing,

         In whom Love wrought new alchemy.

                For his art did express

A quintessence even from nothingness,

From dull privations, and lean emptiness;

He ruin'd me, and I am re-begot

Of absence, darkness, death: things which are not.

All others, from all things, draw all that's good,

Life, soul, form, spirit, whence they being have;

         I, by Love's limbec, am the grave

         Of all that's nothing. Oft a flood

                Have we two wept, and so

Drown'd the whole world, us two; oft did we grow

To be two chaoses, when we did show

Care to aught else; and often absences

Withdrew our souls, and made us carcasses.

But I am by her death (which word wrongs her)

Of the first nothing the elixir grown;

         Were I a man, that I were one

         I needs must know; I should prefer,

                If I were any beast,

Some ends, some means; yea plants, yea stones detest,

And love; all, all some properties invest;

If I an ordinary nothing were,

As shadow, a light and body must be here.

But I am none; nor will my sun renew.

You lovers, for whose sake the lesser sun

         At this time to the Goat is run

         To fetch new lust, and give it you,

                Enjoy your summer all;

Since she enjoys her long night's festival,

Let me prepare towards her, and let me call

This hour her vigil, and her eve, since this

Both the year's, and the day's deep midnight is.

2020 Can Take My Hair, but Not My Hope

My hair started falling out on election night. 

I thought at first it might be the anxiety, that I was literally pulling my hair out with worry over numbers I already knew were not going to be definitive before the night wore into morning but which I stayed up until 3:30am watching anyway. I tweeted rapidly, reassuring my jittery timeline that not only had we all known that the night would bring no results but that we had even expected Trump to lead in key states because of the greater number of mail-in ballots from urban areas that would largely count for Biden. We knew. We all knew. But we were all terrified, flashing back to 2016 and already dreading another four years of living life on high alert, in constant survival mode.

I posted a selfie with a tweet that read, "Could be the last presidential election I vote in (blah blah stage 4 cancer blah blah) and I wish it were better and clearer than this but it's a crucial privilege to have voted. Remember, whatever the outcome, the last thing they can take from you is your hope."

To me that last sentence has been a mantra for these years and for my treatment. I have consistently refused, despite overwhelmingly terrible odds, to lose hope. The story of Pandora's Box tells us that the very last thing left inside was Hope--that even once all the demons were out in the world there was that tiny, feathered creature left to hang on to. It hasn't been easy, but I am one of the most stubborn people you will ever meet (and if you doubt this just ask anyone who's ever fought me on anything!) and it has turned out to be a saving grace rather than an irritating personality trait. Feeling like the world was trying to take my hope away made me angry. And when I get angry I will fight back. 

I know I'm not alone in feeling like we entered some kind of alternate nightmare timeline on election night 2016. To that point, despite periods of immense personal difficulty, nothing truly terrible had happened to me. Then, in short order, my marriage ended and I was diagnosed with and began being treated for a terminal illness, all against the backdrop of a regime so deliberately hateful that it was truly incomprehensible to me. Then, a global pandemic and national crisis swept away the small consolations I'd found in my new life with cancer. The temptation to feel hopeless was strong and I struggled with it, particularly in the isolation of quarantine. I'm struggling with it now, facing a winter of further lockdowns, social isolation, continued chemo, and the added indignity (and chilliness!) of not having any hair. But somehow the coincidence of my hair loss with election night seemed like a good omen for the future, if a sad thing for the present.

I heard the news that they had called Pennsylvania for Biden at a peaceful Airbnb in the Catskills after stepping out of a shower where lost hair in handfuls. It felt oddly like a sacrifice I had made personally. I joked about this with friends on the text chains that lit up and that (despite my promise to myself and my writing partner that we'd "go off the grid") I responded to immediately. Instant replies, with emojis and GIFs, participated in the fiction: "Thank you for your service!!!"; "We ALL appreciate your sacrifice!"; "Who among us would NOT give up their hair for no more Trump?". The feeling was real for me, though. It was as though the good news demanded some kind of karmic offering. You never get something for nothing, I thought, and really it was a small price to pay.

The rest of the weekend passed too quickly, with absorption in the novel I plan (madly, given that I also work full-time) to work on for "National Novel Writing Month" (NaNoWriMo), walks in the unseasonably warm woods, and nighttime drinks on the back deck under the stars, watching my hair blow off in fine strands and drift through the sodium porch light. My friend and I read tarot and both our layouts contained The Tower, the card for new beginnings from total annihilation, the moment of destruction in which (as the novel's title says) everything is illuminated. "This might sound dumb," he said, "but maybe yours is about your hair." It did not sound dumb.

There is probably no more iconic visual shorthand for cancer than hair loss. It happens because chemo agents target fast-proliferating cells, which tend to inhabit things that grow rapidly by nature (hair, fingernails), or that we need to replenish often (cells in the gut), as well as out-of-control cancer cells. But not all cancer treatments, not even all chemotherapies, cause hair loss. In my 20 months of being treated for cancer and my three previous treatments (four, if you count the surgery I had) nothing had yet affected my hair beyond a bit of thinning. This despite the fact that my first-ever treatment (Taxol) was widely known to cause hair loss for "everyone." I had been fortunate with this particular side effect in a narrow way that I have absolutely not been on a broader scale. "Maybe," I had let myself think, "I can have this one thing." The odds were in my favor too; only 38% of people in clinical trials being treated with Saci lost their hair. I liked the odds of being in the 62% who didn't. But--as we all felt deep in our gut while they counted votes in battleground states--odds aren't everything.

I had come to treat the "strength" of my hair as a kind of relative consolation (though as with everything cancer "strength," "weakness," and the rhetoric of battle have nothing to do with outcomes). I treasured still having it, not just out of vanity (though I have always loved my hair whatever length, style, or color it has been) but because it allowed me to pass among regular people as one of them. I had no visible markers of the illness that is killing me, concealed as first the tumor and then the scars were by my clothing. "You look wonderful," people would tell me, even when I suffered from stress fractures from nothing more than running or sneezing; muscle spasms in my shoulder and nerve death in my fingertips; nausea that I swallowed with swigs from my water bottle that just made me look all the more like a hydration-conscious athlete; and profound, constant, and debilitating fatigue. Invisible illness had its own perils but I would take them--take all of them at once if necessary!--if only I could keep my hair and look normal.

It was not to be. A part of me had known this, since a lifetime with metastatic cancer means a lifetime of treatments a solid proportion of which result in hair loss. But I had hoped. And I had liked the odds. 

The hardest thing for me is having to give up this particular consolation before knowing whether or not my new treatment is also working on my cancer. Unfortunately, there really isn't a correlation between side effects like hair loss and effectiveness of treatment. If it is working then I will feel that--like the election to which I felt I had karmically contributed--it was all completely worth it. Yet, even in this best case scenario, there's a new reality for me which is that while I am on this treatment I will stay bald. When you are a chronic patient you hope for a treatment that will work well with manageable side effects. And if this treatment works--and if the other side effects are as ok-ish as they are now--then I will remain on it. 

It's that future that I am furious about more than anything else. I want to continue to live my life, of course, but I don't want to have to do it bald! In part that is because I don't want to register to people constantly as an archetypal "cancer patient" when I know that I am so much more. It is also in part because I don't want to think of myself as being ill, and living every day having to disguise my absent hair will make that all the tougher. I have already noticed that I feel, physically, as though I am sicker because of my constantly shedding hair. How could I not, in some ways, when every move I make and every glance at myself (including in endless Zoom windows) shows me this highly visible change? 

For that reason, I'm shaving my remaining hair tomorrow (Wednesday). It's a way to feel less disempowered--less like hair loss is happening to me--and wrest control of the situation back. I will try to find agreeable things about it: wigs, scarves, cozy caps, bright lipstick, statement earrings, and a general punk/Mad Max vibe that is appropriate to 2020. But I don't want anyone to think for a second that I find this agreeable, or even acceptable, or that I don't mind. I mind a whole hell of a lot. My hair was my consolation prize, my camouflage, my vanity, my folly, and my battle cry. 

I dyed it purple when I was first diagnosed because I knew (or thought I knew) that I would be losing it soon. I didn't, and I came to cherish it as a symbol of my boldness in the face of circumstances trying to oppress me, to make me shrink, to tempt me to become invisible. I refused and used it to "shout" all the louder in response. Because of what it came to mean to me, I'm nearly as sad about losing the purple as I am about losing the hair itself. It both symbolized the weight I was carrying and also that I would not let that weight grind me down. It was my act of resistance and my sign resilience all at once.

I sent a text to my friends, explaining this and offering, as an idea, that I could "pass the purple" to them in some way, small or large. It would feel more like handing off a torch or a weight (or the One Ring) than anyone shaving their head in solidarity. (After all, if they did that it would just remind me as I watched theirs grow back that, in fact, our positions were very different.) You're welcome to do it if you'd like too, internet friends, with temporary or permanent dye or a wig or a headband or one of those terrible 90s hairwraps or whatever. But I don't require that anyone do it because I feel support from you all in myriad ways, all the time. (But if you do, please send me pictures!)

It's November 2020. The election is over and Joe Biden has won. I still have cancer and I'll be bald tomorrow. I hope it's a turning point, both personal and global, because it feels like one. We've given up a lot in the last four years and I cannot say that I feel in any way peaceful or accepting about having to give up yet one more thing. But in losing my hair I absolutely refuse to also give up my hope.

(On our walk we did also seem to find a version of The Tower, all that was left of an abandoned house)