Distress signal

America in distress, by Thomas Cizauskas on Flickr, licensed under Creative Commons
America in distress, by Thomas Cizauskas on Flickr, licensed under Creative Commons

The past week has been hard. I have been at a loss for what to say about our national predicament, which is not a new one, and which is better addressed by people who aren’t me. I am listening and trying to learn. I am standing in solidarity and sadness and anger. And I’m doing it on a screen, because thus far, I haven’t identified any opportunities to gather in public that will be socially distanced enough from Covid-19, and also guaranteed not to expose us to tear gas and rubber bullets in the new militarized environment of Our Nation’s Capital (which is looking uncomfortably much like 1989 Beijing).

My family’s choice of the United States as our new home, over fifty years ago now, should have been an upgrade. In moving here, we managed to avoid military dictatorships and the Dirty War. For many years it did feel that way. But our country, a comparatively young one, is now solidly in the grip of an existential threat. Young J and Young A are 13 and 10 now. I don’t know what to tell them about the future, because it’s bleak.

As a cancer mom, I told my kids everything about my disease and its treatment, but left out the death part as long as I could. In trying to do the same about America’s disease, I cannot “leave out” the death part. Black and brown people die every day in this country because of a number of things, I tell them. Because, in the words of Ta-Nehisi Coates, “In America, it is traditional to destroy the black body.” Because of institutions turning their backs, and because of individuals representing those institutions drawing their weapons instead of deescalating. Because “the people who call themselves ‘white'” (James Baldwin) have been emboldened by their skin color and the lack of impediment to their progress across a continent awash with the blood of so many others. It is of little comfort to me that this country’s original sin took place before my family got here. I want to be part of seeing to it that restitution is made. To say this out loud: It is a Tuesday in June in Racist America. And I refuse to dignify the person cowering and squatting in our White House with the lights off with any of my words at all.

Five years ago today, I underwent gamma knife surgery on nine brain tumors. I continue to be at a loss to understand why I’m even here to type this. It could have been otherwise. I’m sure some people ascribe it to a higher power or to a miracle, but I know in my heart it is random coincidence, nothing else. Perhaps getting melanoma is a metaphor for the corrosive effect of racism in our society. Perhaps it is just shitty luck.

One thing I know for sure is that I would not be here without the true heroes, the pantheon of scientists, researchers, visionaries, and doctors and nurses and assistants and phlebotomists, who treated me, who developed the treatments that saved me, and who gave me courage when I didn’t think I had it. The other night, we watched Jim Allison: Breakthrough. This moving portrait of a man who made it his mission to bring cancer immunotherapy to patients (including me) is just one story of hundreds that could be told, of the people who take cancer personally enough to devote their lives to its treatment and eradication. (My beloved Dr. P is another such person.)

I have always rejected the notion that when it comes to my disease, I am “a fighter.” Other than showing up to my appointments on time, I did nothing in particular to deserve my survival. But it occurs to me that I ought to turn the privilege of having survived — and my privilege, generally — towards making sure that others do.

Black Lives Matter.

April 16? I have issues.

First things first: I had my scans on April 2. They were fine.

What follows is a partial history in photographs, because the extent of my pandemic-induced spring cleaning frenzy has been to move thousands of photos off my phone.

What good was cancer in April? / No good at all,” sings Lou Reed. Don’t I know it. The 16th of April has become a day that lives in my personal infamy.

On April 16, 2013, I was sitting at the computer in my Brooklyn apartment when my dermatologist called with grim news about the biopsy he’d taken from my back a few days before. It was spring in Brooklyn, and I looked out the front window at a flowering tree as I called J. to share the news. Two days later, I met my surgeon at NYU, Dr. Richard Shapiro. (His opening line: “You seem like a nice person. How did this happen?”)

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(I never got to share my spit. They only wanted saliva from healthy patients.)

Several days after that, I was at an interview for a librarian job at a nearby university that was never able to hire me because they ran out of money. That that would be the outcome of the process was pretty apparent to me when I used the restroom before the interview.

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Prescient.

How old were my kids when this all started? Young A had just turned three. And Young J, age six, had brought home from school a biography of Albert Einstein. This page gave me a good laugh.

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“Up to now everything has been fine.”

I was cleaning off my desk yesterday and found the notebook I used to carry to appointments in the early days of cancer, the ancient history. I was given to melodrama, it seems, and just as hard on myself as ever.

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The next chapter of my cancer adventure took place in the fall and winter of 2014, when lung metastases showed up, and were handily dispatched with a short course of radiation and an immunotherapy regimen that was aborted when it gave me colitis that lasted for several weeks.

When I emerged from that episode and its aftermath, I had gotten a librarian job at another college, an hour’s commute from our home in Brooklyn. I was two months into that job when I had another CT scan to check on my lungs. Things had been steadily improving, and on April 15, 2015, I went to see my beloved Dr. P, who had already seen me through some very hard times, for scan results. This card was in the pocket of my spring jacket.

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I SHOULD HAVE WORN THE ONYX.

I had been extremely tired for weeks, but I attributed it to my new commuting schedule and readjusting to full-time work after a number of years away. When Dr. P and her nurse practitioner came in to give me the results of my scan, I saw them high-fiving in the hallway before they came in. My lungs were NED — no evidence of tumors anywhere, even though I’d had to stop the immunotherapy. That response has endured until today.

I was trying to be as elated as my doctor, but I was just exhausted. I mentioned this to her, but I didn’t mention that that morning at work, I’d had a meeting with a student and noticed I was having trouble finding words.

The next day, April 16, 2015, I went back to work, met with students, and had so much trouble communicating I was almost resorting to sign language (which I do not know). Something was not right. I called Dr. P, and was instructed to head directly to the ER. I had an MRI, which showed nine lesions in my brain. I was admitted to the hospital, pestered by neurologists all night, and woke up the next morning to the most ridiculously gourmet hospital breakfast in the history of hospital breakfasts.

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This orange juice was BOMB. I was just a little sad I got discharged after lunch.

I was sent back to Dr. P, and while I waited to see her I asked J. to get me my go-to cancer convenience food for stress, a strawberry frosted doughnut from the Dunkin next door. Before I could wolf down this treat, I was in possession of renewed confidence from Dr. P, a game plan, and some new-to-me medication.

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It started shrinking the tumors immediately.

While this was all going on, it was again spring in Brooklyn, which means one goes to the botanic garden and enjoys the blooming trees along with everyone else who had the same original idea.

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Apricot tree, Shakespeare Garden.

I wasn’t just on Tafinlar, I was on huge doses of dexamethasone. This put me in a very good mood but also made me crazy. Instead of looking at the flowers wistfully, sure I’d soon be dead, I was swept up in the grand adventure of being out walking in the world at Stage Four, with nine tumors in my brain, and felt sure I’d be OK. Those were some powerful drugs.

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Young A and Young J, in sun hats, at the Botanic Garden.

Young J and Young A were eight and five years old by this time. They still remember me on those steroids. I was loquacious, full of schemes, but not particularly well-suited to parenting young children. I could only handle seeing one of them at a time, because their combined energy was more than I could metabolize. I quit my job to focus on getting well, and never managed to return to librarianship.

Now I’ve reached another April 16th. I am five and seven years removed from the worst versions of this date, but they’re still close to the surface, as accessible to me as dirt under my fingernails — by which I mean, I dig for it. I don’t want to forget what it felt like to have the rug pulled out from my naive understanding of what being alive meant. When I lose entire days in contemplative inactivity, I am eternally aware of the privilege associated with being able to do that. Many people with my same stats and my same chances did not get to make it this far. I used to think of them every time I took my meds. Now that I no longer take meds, I think of them when I am going to sleep at night. Endless permutations of why them? why not me? / why not them? why me?

Today, Thursday April 16, I have a checkup with the nurse practitioner. Owing to the pandemic, it will be a video call. No vitals, no bloodwork, nothing at all but a conversation. She will ask how I’ve been feeling, and I will tell her that I feel fine. She doesn’t need to know that I’m having a cancer checkup on a date that lives in infamy — those old dates are buried in my chart, now largely irrelevant to my medical present. She doesn’t need to know about the low-grade blues that set in ever since coronavirus shut us all up in the house, defying me to access the better angels of my nature, smacking down my self-worth when I find I cannot, imploring me to shower more often than every third day.

I’ve reached the stage of living with cancer where the main things wrong with me are no longer attributable to cancer. That’s both a relief and a worry: I know very well how to deal with cancer. I don’t know how to cope with living under threat from a disease that isn’t as selective as cancer, one that may mercilessly take my loved ones from me in spite of every precaution.

We put some more bulbs in the ground the other day, and I’m getting slightly obsessive about checking on their progress. It felt good to sit in the dirt, to feel and smell and see that so many things happen in April that have nothing at all to do with cancer.

 

Pandemic

Rambutan/Coronavirus

I was moving on, getting used to a medication-free way of living. I was more than aware there was a seriously contagious disease that was rapidly approaching our vicinity. Somehow, though, I managed to distance myself from it — just like I manage to distance myself from actually, in my heart of hearts, believing I could get cancer again. I mean, sure. It is possible. But… who wants to live like that?

Answer: No one wants to live like that. No one wants to live with a sword permanently installed above their head. But this is something that cancer patients do on a regular basis, if they’re lucky enough to be in remission.

I was feeling cavalier about the virus, to be honest. J and I went to Costco last Friday, sure we did. And we bought a bit more than usual. But we forgot, or maybe pointedly avoided, buying paper goods (perhaps to our great peril now). I bought more bulbs for the garden, instead of toilet paper rolls.

And then… things started to happen. It started becoming apparent how our president intends to obfuscate and hold back needed information about this virus. People in our county started getting sick. All of Italy closed down. I know a lot of people in Italy, and it is the place I go in my mind when I need to feel at ease. Images of deserted places were difficult. Today, a friend’s image of rush hour Penn Station in New York looking far emptier than normal, chilled me. The world is starting to empty out, like scenes from an episode of The Twilight Zone. Out of a sense of obligation, I texted the nurse practitioner from the cancer center on the portal, asking if there was anything I needed to worry about beyond what a civilian might. No, came the immediate reply. Wash your hands.

Tonight I went to a stretching class taught by a friend and beloved massage therapist. I hadn’t been to class in a while, and it turned out I was pretty tightly wound. Spraying down my mat with disinfectant before class, not hugging the teacher or another class member I’ve known for years, that was hard. We worked on our breathing. Because we need to remember how to breathe, now, and not for any metaphysical reason. Breathing = survival.

I came out of class feeling less stuck and less bent over. And then I opened a message on my family’s WhatsApp, stating that a loved one’s nursing home had shut down for visitors this evening at 5 p.m., until further notice. As I started driving, the reality of that message tightened in my chest. Soon I was sobbing as I drove, thinking of all the people in the care of that nursing home, and how bereft they will feel, whether or not they understand the reason for their sudden quarantine. All the lonely souls lost in dementia and old age, and the devoted people who care for them, suddenly appeared in front of me like passengers on a ghost ship set adrift. It made me unbearably sad, and it led me to something even more difficult:

All this time, for years, I’ve been keeping this blog in order to explain my situation, to perform hopefulness in the face of grim news, and to show how many reversals of fortune one person can experience and somehow endure and survive with humor intact.

I’ve tried to get across the feeling of that looming possibility of the end of life that lurks everywhere for people like me. But you know what I have never wanted for you, readers? I never wanted you to experience that for yourselves. And now, not only can you — now, to stay alive, you must.

I can’t stand the thought of losing a single person I know to this horror. So sing whatever song you must to get through your twenty seconds of hand-washing. Take every precaution you can think of — and then add some extra, just for me.

A letter to Young A (2020 edition) / Into the Unknown

Ten, by burgerking1975 on Flickr, licensed under Creative Commons


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.

Love,
Mama


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.

In a grief space right now

Counting polar bears

Years ago, right after I moved to NYC, one of my grandmothers died. I was still new in town and didn’t have a lot of people to talk to to process this loss, so a few weeks later I wound up calling someone I’d dated briefly just before leaving Michigan. “I’m not really in a grief space right now,” he said when I told him about my recent loss.

I didn’t need much more than that to tell myself I didn’t need to speak to him ever again, of course, but that phrasing just jumped to mind as I started writing this post.

I am in a grief space right now. I’ve seen it coming for weeks, ever since the mid-January date when my father had his brain hemorrhage two years ago while driving back from Home Depot. I saw the memories flash past and the hopeful signs and then the radio silence as we passed his birthday (January 30) and things took the worst possible turn. My mother called it “death by hospital,” and indeed it was the cruelest possible end for my father, who had worried about precisely such an outcome.

The death anniversary does not fit neatly into one day, however. February 1, just about fifteen minutes past midnight, is when my father took his last breath. His funeral was February 2. His death anniversary on the Hebrew calendar, though, falls this year on the 11th. And we will say Kaddish for him not tomorrow, but next weekend.

When you are working between two calendar systems that are only loosely connected, grief space expands, it spreads over you like a temporary shelter. You carry it with you, and it surrounds you.

When the loss of my father was a fresh wound, signs of him materialized everywhere, in unimaginable places and times and objects. Those manifestations have slowed way down over the past year, and I miss them. He doesn’t make appearances in my dreams. So I was hoping for a sign from him tonight as I neared the fateful hour.

J and I settled down to watch a movie after the kids went to bed. It was one we’d borrowed from the library. Almost the first scene was violent, and I have very low tolerance for that, so we looked for something else to watch. We wound up choosing a film which I didn’t realize may be the only film written up on a website for SAAB fanatics.

My father was a great admirer of many things Swedish — furniture design, Ingmar Bergman films, even IKEA apple cake — but his devotion to SAABs was legendary. And here we had chosen a film which not only portrays the now-forgotten SAAB-Volvo rivalry, it also travels across decades and provides an example of nearly every SAAB model ever produced (including at least five different models my family owned). I couldn’t believe this was random coincidence.

The movie ended and we headed up to bed. I found myself reaching to the top shelf of my closet for this flannel nightgown, which belonged, improbably, to Pa. My parents had his and hers red flannel nightgowns with polar bears on them. This was an aberration — they simply weren’t the type of couple to ever dress alike. I rarely saw them wear these. But it’s chilly tonight and I figured if I had any hope at all of some dream contact with my father, this might help bring it about.

Look what a New Agey weirdo I’ve become since you left, Pa. Looking for signs and taking a phrase like “grief space” seriously. I sure wish you were here to make fun of me so I wouldn’t have to do it myself. I’ll count the polar bears, and hope to meet you in my dreams.

Thankful… and thanked

Anonymous

Yesterday I was introduced to my new radiation oncologist, whose blog nickname is also Dr. P, which might get confusing, so I guess I will refer to her as Dr. P(MD), to distinguish from the Dr. P that I used to see in NY.

Without going into much detail, last week was a little bit distressing for me as a patient, for reasons wholly unrelated to the actual disease. And then there was the fact that my latest MRI, which I had right before New Year’s, wasn’t the slam-dunk of good news it had always been. I was left hanging for a bit. Even though the single weird finding in the report was a little suspect, because it was not visible at all with contrast dye, it bothered me not to know what was going on. I am no stranger to the sneak attacks that melanoma can perpetrate on the brain.

This week brought first good news from Dr. H about my eye condition — now most of the way to resolved — and then today, a visit with my new doctor that was unexpectedly reassuring, pleasant, and restorative.

At NYU, the radiation oncologist was the second doctor I met after my surgeon. And when I had an MRI, I’d jump out of the machine and head straight to neurosurgeon Dr. K’s office for him to scroll through the scans, point out my progress, and tell me he was adding my slides to his conference presentations. When I had a CT, I had to wait two days, then went in to see Dr. P and hear how things went in person, but we never looked at the images.

Here in Maryland I’ve lived a very different patient life. I’m post-crisis. The last time I had any active disease was 2015. I have been getting scan results as messages through the hospital portal. Except… maybe I’m not totally post-crisis? The meds have caused their own problems, troubling my eyes for months and sending my care team into overdrive trying to figure out how I might stay on this class of meds when they seem to have it in for my eyes. My latest bout of optic neuritis was caught early; had it not been, I could have sustained permanent vision damage.

I was already predisposed to like Dr. P(MD) because I read some good reviews about her on the web… and because unlike 99% of the medical offices I go to in the same complex, her office validates parking. This is huge. When I asked why, it was explained to me that since radiation patients come in for treatment so frequently, parking would get very expensive for them very quickly.

I arrived for my appointment, which was in the same building where I get my scans, and immediately sensed things worked differently here. A woman who seemed like a social worker was helping a patient figure something out and seemed to be in no rush. There was a coffee corner. No long wait. Everyone made extra efforts to pronounce my last name correctly. I sensed the same humanity that pervaded Dr. P’s office at NYU.

The nurse who took my vitals, nurse manager J, noticed immediately that I was wearing Invisalign. She was too. We talked about it and compared notes for a lot longer than I imagined a medical professional would ever allow themselves to, while she took my vitals. She had a good suggestion for a way to clean the trays, which I’m going to try.

J was already familiar with my chart, but when she went back in to check something, she noted how many pages long it was. 393 pages long. Seems that my body has already written a hefty tome. Just not the kind I’d want to write.

She left the room and conferred in the hallway with Dr. P(MD), and even their tone of voice was different. Dr. P(MD) walked in, a young, energetic and kind presence. We shook hands and she told me how happy she was to meet me. I decided to hold off crying at that incredible moment, and another one soon followed. She wanted to get to my MRI results right away. I asked what she thought of the artifact. She did not just give me an opinion. She said, “Let’s take a look together and decide, shall we?”

In saying those words, she: a) acknowledged the number one reason I was anxious to be sitting there, and b) instantly brought me on as a team member. She was excited to show me around my brain. Later on in the visit, she also showed me images from my latest CT. Guess what? In almost seven years of dealing with cancer, no one had ever offered to show me my CT images. And for some reason I’d never asked. They were fascinating to see, almost artistic.Almost all of me

There were many more moments of connection and of caring in that one hour visit (and she informed me that Dr. K, who used to be the one looking after my brain, is “famous”) and they keep resurfacing in my mind. But one thing above all really got me. I was speaking about my radiation history (which is mercifully short, considering what I’ve been through), and mentioned to Dr. P(MD) that I’d taken part in a research study at NYU in 2014, which combined a short course of radiation to the lung with immunotherapy, to see if the radiation boosted the effectiveness of the drug.

“That has become the standard now, did you know that? It is standard treatment protocol,” Dr. P(MD) said, extending her hand. “So thank you. Thank you for taking part in that study. You made it possible.”

I was confused for a moment. I’m not the one who gets thanked! And anyways, I eventually got colitis from the immunotherapy, so I had become accustomed to thinking of myself as a failure in that regard. I’m always the one who does the thanking for still being alive in spite of what were some (previously) crazy odds. I’m sure that I was thanked at the time for enrolling in the study — although my and J’s most vivid memory of the appointment where I enrolled in the study was when I asked Dr. P why anyone would not want to take part, and she replied she’d just had a patient turn her down, saying (in Dr. P’s fairly convincing version of a Russian accent), “I not your guinea pig.”

It’s been a few years now, and I figured the value of whatever contribution I had made there would surely have worn off in the face of what seems like constant discovery and innovation in the treatment of metastatic melanoma. But caregivers remember. And it turns out that some of them, the good ones, will still say thank you. Last week as a patient nearly broke me, but this week I got my soul back. Thank you, Dr. P(MD).

I’ll be starting the new pair of medications tomorrow, Zelboraf and Cotellic. (Taken alongside the two now-disqualified combos, Braftovi/Mektovi and Tafinlar/Mekinist, these names give me such rich fodder for lexical and semantic analysis — like a Rorschach blot test in letters.) No fasting, no refrigeration, but on the downside, near-certainty of sunburn if I ever leave the house without sunblock on my exposed skin. And, of course, the lingering fear of possible eye damage, which has been a constant while I’ve been on this class of medication.

As far as that pesky “area of artifact” in my hippocampus, we will have a rematch in the MRI machine in early April. The scan is in the same building as Dr. P(MD)’s office, so when I come out of the scanner I will go right to her for a verdict. “And if there’s anything there, we can just zap it,” she said. A slightly different modality of zapping here (linear accelerator instead of gamma knife), but the good part is, that means I’d wear a futuristic plastic mask like the one pictured above, instead of having a titanium frame bolted to my head (which was a little exciting, maybe, but not something I’m eager to have happen a third time). This feels like an upgrade. All of it. Here’s hoping.

Making Me Understand: “For All the Sad Rain,” by Patricia Goedicke

(Making Me Understand is an occasional blog feature where I analyze, in brief or at length, what a particular work of art or an artist means to me right now.)

The bar mitzvah weekend passed in the blink of an eye. All of our preparation paid off and absolutely nothing that mattered was amiss. The tidal wave of joy broke over us and we stood in the surf, blinking and sputtering and smiling from ear to ear.

However, the world continued doing what it does, which is turn. Turn bad, mostly. An old friend, F., lost her beloved sister H. to cancer on Friday, just as we were beginning our celebration. I was simply shattered to receive messages from her, congratulating us, even as she was preparing for the hardest funeral ever.

The collision of good and bad shook loose in my brain a poem that I hadn’t read in a long time. I am fairly certain I was introduced to it in my freshman poetry workshop at University of Maryland, taught by Kim Roberts.

Patricia Goedicke (1931-2006) was born and raised in New England but spent the rest of her life moving westward (to Ohio, then Mexico, and then Montana). In her youth she studied with Robert Frost at Middlebury College, which thrills me because I took part in the Bread Loaf Writers Conference at Middlebury many years ago, and visited Frost’s cabin there. She also studied with W.H. Auden at what is known today as the 92nd Street Y in New York. I took many wonderful poetry workshops there, when I first moved to NYC.

There are any number of drafts of this poem. I don’t own the collection that it was a prelude to (The Wind of Our Going) so I tried my best to find the version that I read in college. I strongly recommend that you read this poem aloud:

For All the Sad Rain

 

O my friends why are we so weak

In winter sunlight why do our knees knock,

Why do we walk with small steps, ugly

And spindly as baby birds

 

Whose world do we think this is?

O my friends take it,

O my friends don’t look at each other

Or anyone else before you speak.

 

I have had enough of scared field mice

With trembling pink ears,

I have had enough of damp

Diffident handshakes,

 

Do you think I haven’t been stepped on by giants?

Do you think my teachers didn’t stand me in a corner

For breathing, do you think my own father didn’t burn me

With the wrath of a blast furnace for wanting to sit on his knee?

 

Indeed I have been pressed between steamrollers,

I have had both my feet cut off, and the pancreas

And the liver and lungs of the one I love

Have been sucked out of my life and the air around me

 

Has turned to cereal, how will I stand up,

What opinions can I offer but I will not be silent,

There are dogs who keep their skinny tails

Permanently between their legs

 

But also there are sleek horses, as easily as there are curs

There are squash blossoms that flower around fountains

Like white butterflies, there is courage everywhere,

For every reluctant nail-biter

 

There are a hundred raised fists, for every broken broomstick

There are millions of bent grasses snapping

Back and forth at the sky, beating the blue carpet

As hard as they can, with the frail tassels of their hair

 

For every pair of eyes squeezed tight

Under colorless lids there are thousands of others

Wide-open, on the proud columns of their necks turning,

Observing everything like King Radar,

 

O my friends for all the sad rain in heaven

Filling our dinner plates you have ten fingers of honey

Which are your own, stretch them, stick them up

And then, wave to me, put your arms around each other’s shoulders

 

When we meet in a field with no fences

The horizon is yours, and the books and all the opinions

And the water which is wine and the best bed

You can possibly think of to lie in.

 

What a journey this poem is. I adore its audaciously varied line lengths, and the changes in the speaker’s register, which range from the oracular and religious to the informal and everyday. I’m intrigued by “King Radar,” the air that has turned to cereal (not the  kind that waves in the breeze, I imagine, but the soggy kind in your breakfast bowl), and the single stanza that presents a chain of images from horses to curs to squash blossoms to… nail-biters. There truly is something for everyone here. The “field with no fences” connected me immediately to the landscape of the US-Mexico border, and the abject misery of incarcerated migrant children. And yet, the voice here, while obviously traumatized, is clear and strong. It exhorts us not to collapse into ourselves in sadness.

It is no mistake that this poem resurfaced in my consciousness at a time of worldwide and local upheaval. My son became a bar mitzvah at a time when Jews are being attacked and murdered, in our country and around the world. My friend F. lost her sister to cancer in a world where new treatments offer some hope, but not yet anything globally reliable. We are enjoying yet another New Year’s Eve day with temperatures in the 50s and I wonder on a small scale when on earth to get the bulbs in the ground when the alliums I planted last year have already decided the party is starting. I wonder on a large scale what kind of scorched, post-apocalyptic landscape of famine awaits my children in their adult years. We continue never to watch television news with them, or bring any newspaper headlines to the dinner table. I hate keeping them in the dark. But then, the news keeps all of us in a dark, dark place.

I think a lot of us need this poem now more than ever. I know I do. I had a brain MRI yesterday, and because of the holiday, I have not yet gotten a report back from it. (Usually I hear in a matter of hours.) So I’m trying to proceed with my day, but the giant sword that perpetually dangles over my head keeps troubling my peripheral vision. I just need independent confirmation that I am as OK as I feel. But of course nothing is OK, and it is possible nothing has ever been OK. Patricia Goedicke gets that exactly right.

Happy New Year. Let’s all put our sticky honey fingers around each other’s shoulders in solidarity, and wade back out into the mess of the world and try to do some good in it.

 

A Letter to Young J, bar mitzvah edition

Feeling crafty

Dear Young J,

It is the morning of your bar mitzvah. We’ve all spent months getting ready in our own ways — you, by learning to read from the Torah and preparing a short talk discussing the text, but also by being asked to contribute in a larger way to the world. Because today’s Torah reading is so long, others were drafted to help, and now the roster of readers today includes me, J, Savta (my mother), Uncle G, and a friend of ours. You have some kind of power, to make such a thing happen.

In looking for a mitzvah project, you chose to tackle hunger. You serve meals at a soup kitchen once a month. I had the great privilege to work alongside you, the first time you went. Your absolute focus on doing the job right, which includes a smile for every person coming through the line, was all I needed to see to know what kind of adult you will be. You’re one of the good ones.

This weekend is a whirlwind of activity. Family and friends joined us from all around, and the glowing energy produced by all of the love is something incredible to witness. I have been saying for days that it feels like a massive tidal wave of joy is about to hit us. I don’t think that’s just the prednisone talking. I’ve been able to push through all of the planning and long lists of minutiae with a minimum of grumbling, because the cause is such a good and deserving one.

Last night three of your friends from New York joined us at dinner, kids you’ve known for a few years who are a bit older than you. I was stunned to see how tall they’d gotten, one nearly my height now. It occurred to me that these thirteen years were just the blink of an eye. I now understand, but can’t quite understand. We lived this span of time minute by minute, hours waiting for you to nap and then hours waiting for you to wake up, measuring time in baby spoons of mashed peas. Now the units of measure increase.

Young J, it wasn’t a given that I’d be here to see this day. I’ve always soft-pedaled the malignant part of the disease I’ve been marked with for the past six years. Even though I have come so far, and science has come so far, there will always be a question mark at the end of the sentence. I have been off any cancer meds now for at least a month while my eyes heal from the havoc the meds caused.

I never ask you what it is like to be the child of a person with cancer. My disease has worked its way into the fabric of our family, and not only through my endlessly berating you and Young A about protecting yourselves from UV rays. I’ve developed a way to mention as casually as possible whenever I have a scan, and I ask you to wish me luck, and you do. I don’t think anyone involved in that conversational transaction ever considers that one day the outcome might be anything but good. I don’t look forward to that day… even though there is a small part of me that considers the possibility with a perverse kind of excitement — as though I were looking for a new challenge, and nothing but a mortal threat could ever measure up. I scheduled a routine MRI for the Monday after your bar mitzvah and find I am looking forward to it, much as others might anticipate a spa day.

Let’s just proceed as though I get to be your mom forever, or at least for a really long time, OK? Keep making me proud, and I will try to keep doing things that make you proud of me.

Love,

Mama

48

Self-assessment
I was born on this day, on the other side of the equator, three days before I was due, because of a soccer game that was going to snarl traffic on my due date. (I think I was once able to independently verify this, since Pelé was one of the players on one of the teams.) Family folklore also claims my parents were made to pay an extra fee so that I would have an “inny” bellybutton, much coveted in my native country of Brazil.


I’ve spent five years here on the blog navel-gazing, as it were. I introduced my seven year plan here, and I just completed my reflections on year three of it. As a plan it doesn’t stand up to any rigorous external testing. I think I just decided that year four of it will be entirely conceptual and unspoken.

I’ve been meaning to post here for at least a week, because I’ve been back on prednisone for a week now. The ocular toxicities caused by Tafinlar and Mekinist (my former meds) and/or Braftovi+Mektovi (my current meds that I am on hold from taking) have extended to optic neuritis (swelling of the optic nerve), which could lead to permanent vision damage if not dealt with. So once again, I am off the cancer meds, on steroids, and hoping that the cobbled-together approach of retina specialist Dr H (who finally got off his ass last week and reached out to his network and realized a former colleague of his co-authored a paper about the toxicities of these types of targeted therapy), and oncologist Dr L (who is kind of on my shit list at the moment for giving me the impression that it would be fine to start tapering off steroids as soon as I started them — which turned out to be contrary to Dr H’s feelings on the matter).

How is prednisone this time around? As sneaky as always. A week in, my face is beginning to show signs of the moon-like contours it takes on, and my sleep patterns are predictably trashed. It is starting to feel normal to wake before it’s light. The kids are surprised to see me up and about before 7:30.

I have some of the steroid rage, but it seems to be largely channeled towards one particular task that lends itself to obsessive repetition: learning to chant a significant amount of Torah in preparation for Young J’s upcoming bar mitzvah. I haven’t read Torah in a number of years, and certainly not thirty verses of it! So I’ve been practicing for hours, in a kind of fever dream, establishing connections between the text and the melody that only exist within my brain and possibly would not survive going off prednisone. If a God exists and is listening (take all the time you need to ponder that, I’ll be here when you come back), then that God must be very surprised to hear me so completely immersed in this one small section of the Torah.

So now, I am secretly hoping I will still be on steroids through the end of the month. The weight gain, so far, isn’t happening, because I’ve been vigilant about eating for the past couple months, and am trying to keep it that way.


In scans news, I had a good result to a CT scan last week, and have a brain MRI awaiting me at the very end of the year.  I am continuing to be, in my own parlance, a “long-term remitter.”

So, I look ahead to the bar mitzvah that is coming soon. I look back towards the entirety of 2019, the very first full calendar year that elapsed without my father in the world. And I realize that to get through such a momentous rite of passage for my son and my family without looking like a bedraggled, snotty mess, I need some tactics, some techniques for keeping the tears at bay. I turn to one of my two “secret internets” for advice. Some parties say, “Why fight the tears? After all, you didn’t think you’d be here.” (Cue TEARS WHILE PARTICIPATING IN A DISCUSSION ABOUT HOW TO STOP TEARS). But then someone quietly discloses that they have a way. A way that sounds counterintuitive, but which I am finding is actually working. You must smile. Hard. With your whole face but especially with your eyes. And I’ve been practicing, because life basically presents opportunities for me to dissolve into tears on a daily basis. Turns out it can work. It does something to your tear ducts. It is hard work but perhaps worth it not to have smeared mascara and a desperate need for tissues that I never seem to have.

Of course, my practice sessions have often been around the kids, who find my suddenly-smiling face unfamiliar, horrible, and amusing, and now take to chanting “creepy clown face!” just as I am trying not to cry. Sometimes it makes me laugh. This morning, before Young A left for school, he brought me the dog-eared Beatles book with the fallen apart binding which my brother G gave me for my seventh birthday, and summoned me to the piano to sing “Let It Be” while he played it for me. It’s hard to sing when you’re forcing a smile and your kid’s face is beaming up at you as he bangs the chords loudly over your voice. I eventually erupted in a sobbing guffaw, release and relief oozing from every pore, because damnit, it’s my birthday, and I’ll cry while I laugh and sing if I want to.

“I am gonna make it through this year if it kills me.”

https://youtu.be/ii6kJaGiRaI

Five years, & nearly four

Today is I’ll Live’s fifth blogoversary!

I couldn’t have anticipated a lot of things when I began this project, not least among them that I’d be composing this post from a different home zip code than the one where it started — or that my father, who lovingly commented on my posts here while he could still remember how to, would no longer be here today.

When I started writing here, I had exactly zero guarantees I’d make it this far. When my melanoma metastasized in 2014, treatments were looking promising, but my survival was certainly not guaranteed. I remember doing a bit of market research, to figure out who was writing the most prominent melanoma blog in 2014. I found that many of the blogs simply trailed off… or ended, badly.

Giving this blog the name I did was primarily intended as a dismissive, tongue-in-cheek comment on my health situation (the distancing of cancer via humor being my number one coping strategy), but it was also an unconscious wish/intention/prayer. It seems to be working so far, but for no particular reason that I can understand; people have died and continue to die from my disease, people who wanted to live just as much as I do. I think continually of Kate Boone and Jody Budde… to name just two of the departed.

When I started, I aimed to make this blog a useful place for fellow patients to check in and compare notes, when their treatment and side effects might have been similar to mine… but I didn’t actually work hard enough at that. I experimented with subject tags early on, but was too steroid-addled, sick, distracted, and/or freaked out to do them well. Now that I have as many posts up as I do, the task of tagging seems impossible and futile. Also, the need for the more explanatory kind of writing I was doing at the start of the blog has decreased. Immunotherapy and targeted therapy are things people have heard of now. I’d say about 40% of the time, when I’m speaking to someone I’ve just met about my cancer experience, they will have heard of one kind of treatment or the other.

Pausing to consider the huge gains that have been made in treatment of advanced melanoma over the past few years is positively dizzying. But there are still too many question marks. Survivorship for advanced melanoma patients having been established beyond a shadow of a doubt, I think we now need recognition that those patients who do get to survive should have a better idea of what we might be in for.

Say you’re on the same medication for over four years and it suddenly turns a bit toxic (I’m looking at you, Tafinlar and Mekinist). If you’re switching to the competing brand, how will it affect you? What do you need to worry about? What don’t you need to worry about? I don’t quite have a place to get those answers, beyond the discussion boards, where responses may be all over the map (aka anecdata), or asking my doctor.

It would be nice for people in my same boat to reach a point where we can stop intoning to ourselves, “We *are* the survivorship data,” and instead be able to refer to a body of concrete evidence of our continued existence.

Today I visited the retina doctor, Dr. H, again. Although I’d upped the frequency of the steroid eye drops, the floaters worsened, and I panicked about facing a weekend unsure whether I was going to lose my vision in that eye. He had mentioned when I saw him earlier in the week that injecting steroid might have a faster effect on the swelling, but I was too freaked out to accept that.

Another coping mechanism throughout my illness has been to find amusement in waiting rooms any way I can — whether that is analyzing the selections playing on what I dubbed Cancer Radio; the free magazines left in the waiting area; or more recently, the intrusion of television in medical offices. This gem of a video was playing on the nonstop, nonspecific “wellness” channel in the retina group’s waiting room today. I had to film it to be sure I wasn’t hallucinating.

Today, the assistant ran another retina scan which showed that the swelling had in fact started to decrease with my use of the steroid drops. Dr H concurred. But I decided to ask him again about the shot, and he explained that it would not be going into the eyeball, but rather between the eyelid and the eyeball, towards the back of the eye where the swelling is. Taking courage from my mother, who has coped with similar circumstances, I decided to say yes.

The next thing I heard Dr. H say to the assistant in the other room was, “Get me the sclerodepressor.” I panicked a bit at the sound of that, then a bit more when I saw the instrument, which seemed more appropriate for dental torture than ocular torture. Dr. H finally showed a sense of humor by saying, “I call this my pain stick.” I knew then I could laugh. Then I was tipped back in the chair and told to look in a number of different directions while bright light shone in my eyes. I squeezed my thumbs against any potential pain, but there was no need. I saw the syringe approach, but my eye had been numbed, and it wasn’t actually piercing any part of my eye. I only felt a vague stinging that was soon gone.

Dr. H tried to fake me out by saying he was now ready to inject, but I knew the worst was over. I walked out feeling rather bulletproof and walked back to the car. Oh, did I mention that I chose today’s doctor visit as a pilot attempt at not paying for parking? I visit the medical campus where Dr. H’s office is located so frequently, and I hate paying eight or sometimes even as much as twelve dollars for parking. Today, I mapped the distance from the shopping mall and realized it was only three quarters of a mile away. I parked, went in to the mall to get a cappuccino and something to eat while I walked, then set out. It was a clear, sunny day, but suddenly cold. I needed gloves and a hat, which I hadn’t brought. The walk on the highway overpass was especially chilly. But it felt good to move — beforehand, with a warm drink, and afterward, knowing I’d overcome yet another medical procedure that seemed unthinkably horrible until I actually experienced it.

Which brings me to the fourth anniversary, which I will mark on November 18. That day in 2015 was the date of my second gamma knife surgery. It wasn’t entirely clear at the time that it was going to work, that it was needed, or that invasive brain surgery wouldn’t have been more successful. But I am grateful to this day that Dr. K made the call he did. Since that second surgery I have been in long-term remission. One more year, and I’ll reach the coveted five year survival mark. (Why exactly it is coveted, I am not sure. I covet every single moment of disease-free survival.)

Thank you, dear readers. I thrill to your comments and likes, but I also get a charge from seeing the world map that tells me where you’re checking in from. Just writing this blog has kept me sane, but knowing it’s being read? That keeps me warm. ❤❤❤