It bends

arc, by electricnude on Flickr, licensed under Creative Commons

I started composing this post a couple weeks ago. This is starting to become a theme here, I think. I started writing but felt that my tale lacked a narrative arc. It lacked closure. I am not sure I have it quite yet, but I’ll know by the end of writing this. I don’t know where this piece will go, because I’m writing it a couple of weeks removed from the inciting event, and in the grip of rage over the [latest] travesty that took place on Capitol Hill tonight.

Sometimes it isn’t until I’m right in the middle of a reenactment of something unpleasant that I realize what’s going on. Since my eye condition (itself an unpleasant thing that I’ve cycled through many times since 2015) persists, so does the continued need for multiple prescription eye drops — or as I think of them, the gold leaf-encrusted artisanal doughnut of the prescription drug universe.

Almost five years ago, I was in a pricing bind with some eye drops, the resolution of which was epic and which I recounted in granular detail here, because I was on dexamethasone at the time.

A couple Fridays ago, after I’d already been to see the newer Dr H (glaucoma specialist, not to be confused with Dr H retina specialist, same office), I came home and realized that the drop in the green bottle with the purple cap, which had been running low for days, was basically empty.

The doctor prescribes these, and then you are basically on your own figuring out how to pay for these. What would you pay for the one on the upper left?

So I call in a refill to the pharmacy near my house, checking the price I paid for the 5 mL bottle last time: $40. I get a text in response:

Xxxxxx Xxxxxx Rx: You have 1 prescription(s) ready for pickup. Estimated cost is $140.00

I pick up the phone immediately to call them. The pharmacist checks my insurance and says, “Yep, that’s the price.” I protest that I’d paid a hundred dollars less the last time. She can do nothing further for me.

Remember, it’s Friday afternoon, it’s getting later, and offices will start to close soon. I should be getting dinner ready but instead I’m caught in a loop of music on hold with my company. I notice the music on hold has changed in the past five years, from a single jazz riff endlessly repeating, to classical piano. At one point I am even hearing the Mozart sonata Young A is currently working on. Except the sound is distorted and unlistenable, almost like a dental drill to the ears.

After a lifetime, a well-meaning guy comes on the phone, and after putting me on additional endless hold, he comes back and tells me that yes, my copay is $140 for this tiny bottle… and that that is the price I paid last time.

I want to scream. I have J look up our credit card statement from July so I can prove to myself I’m not crazy. I paid $40 for the drops in July, and my insurance swears I paid $140. There is no talking them out of this crazy notion.

In the meantime, it is past 5 p.m. and the message I leave on the voicemail at Dr H (glaucoma specialist)’s office, asking with despair in my voice if I really need to stay on these drops, will now go unanswered until Monday.

I sob at the dinner table that night, and drink a lot of wine. I feel very sure that my life is worthless to the forces that drive healthcare, and I can’t even count on my insurance company to agree on a simple fact.

Over the weekend, I learn that when you have a tiny bottle of eye drops that cost a fortune, and that bottle seems to be empty, you can manipulate it in a particular way to extract its final precious drops. I use the drops six more times between Friday night and Monday morning, each time producing enough from the bottle to make a decent sized dose.

Monday morning I call the specialty pharmacy that recently helped me get the other super expensive eye drops which have no generic equivalent — they had sold those to me the week before for $50, and I was glad to have them. They run my insurance and add a coupon from the manufacturer and after I am on a short hold, they come back to inform me that they can sell these drops to me for $15. I am in disbelief and say, “One five?!”

The only thing is: I’d been over to that pharmacy the week before to pick up the other drops. They’re a tiny office in an office building in an office park wasteland. When I’d been to the office to pick up my drops, I noticed none of the women who worked there wore masks (all the men did). I wasn’t happy about this but decided to hold my tongue and get out as quickly as possible.

This time, I’d have to go back knowing their mask protocols were not strong, and knowing that the woman who went to bat for me on the phone and got me the right drug price was one of the maskless people.

I got a call back from Dr H’s office, and they informed me that the drop I’d been trying to get this time around came in a cheaper generic version, and they could prescribe that instead. I opted to pick up the drug that was the same I’d been using, at the suddenly bargain price of $15 (and possible covid exposure).

I felt triumphant for a moment, as one does when one prevails against a soulless system. But that triumph doesn’t last. There is always something to drag you back to the reality, which is that we shouldn’t have to be fighting these companies in the first place. I remember having eye problems in Italy and walking into the one pharmacy in town open on a Sunday and buying a bottle of eye drops over the counter for about eight bucks: no prescription, no outrageous copay.

In Brooklyn, my trusted ophthalmologist, Dr D, always turned his cluttered office upside down looking for samples when I needed eye drops. He didn’t always have them, but he’d always check. I miss Dr D and his ad hoc solutions to my eye problems, problems which are rare enough that they seem a bit ad hoc, too.

The care my eyes receive now is highly specialized and eminently qualified, but sterile (sterility being not entirely undesirable these days, but from a medical perspective, not an emotional one). I have simple needs: I have had the same pair of glasses since 2012 which I would like to update; and I can barely see the computer to work anymore, because I likely need reading glasses or progressive lenses.

Here we are. I think this was my destination all along: a veneer of sterile professionalism applied to a soulless enterprise where lies are passed off as truth. This passes for Healthcare. Switch contexts, and this passes for Government, for Justice. There was a crime against Democracy committed in the Senate tonight, the remedy is uncertain at best (with just over a week to go), and there will be no lower-priced generic. I sure hope the people who save us keep wearing their masks.

BRAF mutation — know yours!

I was so honored to be asked by the Melanoma Research Foundation and Novartis to write about the BRAF mutation of my melanoma, and just how knowing it made all the difference in my getting the right care in record time, which made a crucial difference in my survival. Please read my essay and share to anyone who might find it helpful!

What’s going on here these days: I’m anxious to be rid of the Superspreader in Chief and all of his hangers-on; anxious about our elections being free, fair, and safe; and anxious about the transition period. Part of me wants to be suspended in a sensory deprivation tank until January 21. However, I have scans this coming Monday, adding my usual scanxiety to the general anxiety. As always, I’ll be sure to post scan results here when I have them. I’m so glad to have you following along.

UPDATE: Scans all fine! Sorry for the delay in posting my results. I forget that not everyone is intravenously connected to Facebook. (I’d love to sever that connection myself.)

Six years since

Gowned waiting room, 5 p.m., September 29, 2014

It’s the sixth anniversary of my taking this photo, which was sometime in the middle of my first week of combination radiation and immunotherapy treatment to try to chase the tumors from my lungs. This was the gowned waiting room in the radiation department, located in the basement of the NYU Cancer Center.

(Spoiler alert: it is six years later, and there are no more tumors on my lungs.)

I think what’s so riveting to me about this photo is the absence of people. It was 5 p.m., not a very popular time for treatment, but they’d had to schedule mine in a hurry, so I went with what would work. That would have thrown our family schedule into disarray, since I would have normally been home with the kids at that hour.

As I look at the photo, memories flood back: the radiation technician who was genuinely surprised I refused to let him tattoo the spots where the beams would need to go (he gave me waterproof stickers instead). The women sitting in the waiting area with me, all of us in seersucker gowns, either trying hard not to connect with each other, or trying too hard (I was mostly the former).

One afternoon, there was a woman sitting next to me in the waiting room with the most fabulously strange shoes on, like lace-up high heeled oxfords crossed with red patent overshoes from outer space. I was considering asking her where she’d gotten them when they called her in, by her last name and first name, like everyone else, and I realized she was a very famous artist.

Another afternoon, I needed to use the restroom and there was a cop posted outside of it. A prisoner had come for her radiation treatment, and was using the bathroom before heading back to the van that would take her back to jail. I thought for a long time about those precious few moments she had to herself in the cancer center restroom, before the handcuffs went back on. The violent juxtaposition of high-level cancer care with the certain squalor to which she would be returning was too much to bear.

I think this blog is approaching its sixth anniversary, too, because Yom Kippur was yesterday, and six years ago on Yom Kippur was when I decided to skip observing the holiday in order to take stock of my new life as a metastatic cancer patient and decide what this blog would be (and wouldn’t be).

I’m still so grateful to still be here. I’m still gutted about the people who aren’t. And I resumed observing Yom Kippur, because I find it helpful, in the absence of any actual healing I can perform, to pray for the health of others. Just in case it helps.

I want to thank you for still being there, reading along. I hope you are doing fine, or as fine as is possible in a world like today’s. I will keep doing fine as long as I can. So far, that’s been longer than anyone could have imagined.

The air is thick with it

Suspense, by Joachim Aspenlaub Blattboldt on Flickr, licensed under Creative Commons

[Begun in August’s hazy heat, completed under tornado watch in September.]

August already. The ocean calls out to us. Do we need some healing salt water in our wounds? Last August, I was racing to meet Italian deadlines, trying to get work done before the office that issued my work shut down entirely for holidays. This year, I’ve had exactly one small Italian job. Thank goodness for other sources of work… still, there is much less than I’d like. Insert shameless link to my business website here.

How do you feel? I hope you are breathing easily, not depending on a pulse oximeter readout or a test result to tell you that you’re OK. Good health is such a precious thing, isn’t it? It is a fence we have the luxury of being barely aware of until we suddenly fall over to the other side of it. And now all of humanity has fallen on that side of the fence.

Of course, some have been on this side for years now, and some even their entire lives, so we’re more than happy to orient you. Basically, it turns out the place you were before was actually all just a lie you told yourself, and it was easy to sustain that lie because you didn’t know any different. No hard feelings! You’ve been living a new reality for months now. Feels like a long time; it isn’t. This is a Long Haul kind of thing.

If you are supposed to have anything to do with a school, either teaching or learning in it or loving someone who teaches or learns in one, right about now (in some parts of the world, anyway) is probably when you would be slowly preparing your mind to get back to it, or prepare your loved one to get back to it. Whether or not you should be teaching or learning in a specific location that is not your home seems to be something up for debate. I’m not sure what to say about that. Making a plan to open a school building, before there are any vaccines available, and in a country where there are sizable numbers of people who actually seem to believe the virus is something they may choose to ignore or is as imaginary as the Tooth Fairy — I’ve heard it compared to making plans to move back into the house while it’s still on fire. It would be so great if school districts didn’t need to figure all this out on their own. If there were, for example, some entity that were actually involved in the oversight of the many, many public schools in this enormous country. And, if that entity existed, that it were not headed by a billionaire with no experience or particular interest in, and in fact open hostility towards, public schools.

But I digress. It’s hard, being stuck on this side of the fence with no possibility of return, no release date. If you aren’t a Very Special Cancer Person like me — or a long-haul COVID-19 person, like some people I know — you don’t even get the reassurance of a regular battery of tests that will prove to you beyond a shadow of a doubt that you are still OK. Maybe in the future those will be as widely available as they should be, but for now, getting a test means jumping through some hoops. It might cost you money. You might not get results for a while, and the result might not be accurate and you might be needlessly worried or inaccurately relieved.

The awareness of potential impending doom is heavy, and it can crush you. The trick is how crushed you can be on a regular basis and still function. Some people swear by exercise. Others, meditation. The only thing I do fairly regularly, and which helps me, is a daily afternoon nap. This is no Mediterranean two-hour siesta. I set my alarm for fifteen minutes. Twenty if I think I might not drift off right away. I close the curtains and take this time to be absent from the day. Often, I wake with a start, thirty seconds before the alarm, sure I have slept through an entire day.

Distance learning began this week for Young J and Young A. Young J is starting high school via screen, and I can’t say I mind all that much, given that his high school enrolls well over two thousand students — ten times the size of the school he attended in Brooklyn. My day is spent checking and re-checking their schedules to make sure neither one has forgotten to show up for class, in between brief spurts of my own work or other things I need to attend to. And then comes the need to scour the website for any assignments. Come the end of the school day, I’m as exhausted as if I’d taught or attended class myself.

Healthwise, the legacy of cancer stays with me via eye drops. Three types now, to deal with the increased intraocular pressure caused by prolonged steroid usage required to deal with the iritis caused by the cancer meds — yes, the meds that I stopped taking in February of this year. (I’m sure I’ve already lost you.) I’ve now added a glaucoma doctor to my team. His name is also Dr. H. On my first visit he asked in no uncertain terms what the status of my cancer was, because he needed to know whether to consider me more like a 78 year old patient, or a 48 year old one. He doles out eye drops. I was on one kind, he prescribed an additional kind, and, when the pressure in my right eye failed to drop significantly, added a third. This new one is very expensive, but I already have a magic pharmacy number in my contacts which has coupons at its disposal.

The new drops live in the fridge and I use one every night in one eye, meaning the sample bottle Dr. H gave me should last six to eight weeks. I was strangely upset yesterday when he gave me the new drops. I had wanted it all to be over. I wanted to have an eye exam, get a new glasses prescription, and get to the fun part — replacing the frames I’ve worn for the past eight years. But I failed to realize that this eye condition is as intractable as corruption. Now I have to believe three types of eye drops will do the trick, where only two have not. I have to hope that my tendency to get less common side effects means I won’t get the redness associated with this new drop. When they dilate my pupils, which is every time I go, I always come home feeling defeated, like the day is ruined. I draw the curtains and stay in bed until it’s dark out. It’s shockingly easy to do that these days. But the next morning, when I still feel like doing that, I have to face that it’s not really the dilated pupils anymore. It’s something else. It’s everything else.

“What will we remember about this time?” people seem to be asking lately, with so much eager frequency, you’d think the end was already at hand, doctors and nurses and EMTs whipping off their masks and embracing (consensually, this time) in Times Square like the Eisenstaedt photo from the end of WWII.

Here we are skipping ahead to the end, when we’re still mired in the utter mess of it: both the actual virus, and the infectious disease we call president. Everyone wants to say they spent this time in limbo productively, admirably, attending to their own needs, their families’ needs, their communities’ needs, with the kind of attention that becomes impossible to muster after enough nights of doomscrolling long past one’s bedtime. Every day serves up a new horror.

I want to believe there will be an end to the twin horrors we are living through. Although one end date is uncertain, I want to believe, in spite of all indicators to the contrary, that the other comes on Wednesday, January 20, 2021. I’ll be spending my time until working on ways to make sure that day comes to pass in the way I hope it will, because if we are to have any kind of healthy future, what comes first is a peaceful transition to competence.

“Did you ever go clear?”

(The CT contrast I was served in New York was thick, milky, badly flavored and hard to choke down. The CT contrast they give me now tastes like heavy, suspicious… water.)

The last time I wrote here I felt so much older. The school year was still grinding its gears before the slow, screeching halt. Now we have more or less settled into summer mode, whatever that means this year. For the first time in several years, the kids were with us for July 4th. Young A was excited to see fireworks (which we watched from Mom’s balcony) because they never see them at camp.

The weeks center around when we have been able to get a slot to swim at the neighborhood pool (and keeping track of when the last thunderclap was, as I am at this very moment, because the pool reopens 30 minutes after that). We take bike rides around the neighborhood. We make grand plans for new things to cook and then actually cook them. We keep a weekly date on Wednesday nights to watch a 45-minute performance by Robyn Hitchcock, live from his Nashville home. On television, we’ve introduced the kids to some iconic TV ensembles: The Simpsons, the Bradys, and most recently, The Muppet Show. We’ve watched enough Hitchcock movies now that Young A sometimes requests to watch “one of those funny murder movies.” (We avoid the really twisted ones.)

My translation work has all but ground to a halt, mirroring the economy of one of the countries that provides me with the bulk of my work. This gave me time to finally set up my business website. Luckily J’s work continues uninterrupted, because he’s in that sort of line.

As the survival milestones pile up around me, it becomes more and more difficult to conceive that my life was in grave danger five years ago. The feeling that has replaced it is a larger and more generalized fear, for all humanity across the globe under threat of the coronavirus (and totalitarianism), and for Black people being hunted by racist police in my own country. As conversations rage about how school should or should not resume, I find myself desperate to put any big decisions on hold until we have a functional and competent Federal government once again, but that won’t be until at least early 2021. In the meantime, I hope for a vaccine swiftly and in our days, and I read about racism and inequality, and try to see which of my life patterns may be aiding and abetting these things.

Like clockwork, though, things come back around to remind me of the passage of time. This Friday I’ll have my second set of scans since the coronavirus changed everything. The last time I went, they were still letting you walk into the facility and call the elevator yourself. This time, I will have to call a number to be admitted to the building. It seems very special and exclusive and fills me with dread. Not for the outcome of the scans, but for the process of getting through them without contracting any other disease.

It won’t be a typical scan day where I can reward myself for putting up with the various intrusions by having a leisurely breakfast after. The cafe I would have gone to is inside a shopping mall, and even if it has reopened, I won’t risk it. Instead, I’ll head home, perhaps see if I can take the kids for an afternoon swim (although the sun is strong then), and prepare for the next day.

This Saturday, I will walk 5K around my neighborhood to take part in the virtual Miles for Melanoma in support of the Melanoma Research Foundation, an organization that does so much to support research, education, and advocacy. I just learned about the event today, so am late in the game in terms of fundraising. It is very hard times and I don’t expect many people have extra coins lurking under the couch cushions… but if you feel inclined to make a small donation to MRF, this is my personal page for the event. I’d be so grateful.

Update: Scans were all fine! I will live to see another quarter.

(* Leonard Cohen fans, please know that the title of this post came purely from looking at the image that accompanies it, and hoping for clear scans this week. I haven’t suddenly turned to Scientology!)

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.