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.


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


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.




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.”


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. ❤❤❤

Tectonic shift

Ask your body

The past months have been the longest uninterrupted stretch of time I’ve been dealing with a single side effect to my cancer therapy since I started. Iritis returned in late July, and here we are in November, and it still hasn’t resolved.

Last week things seemed to take a turn for the worse. My right eye had more floaters (in case you’re unfamiliar, those are the spidery or cobwebby strands across your field of vision — if you’re lucky, they go away). The flashes of light from the week before gave way to more eye pain. It started to seem like a More Serious Situation.

But we were traveling this past weekend, so I did the next best thing to seeing the retina doctor in a timely way: I informed Nurse Practitioner Megan that I’d be taking some time off from my meds. She agreed, although the fact that I was still suffering from this condition seemed to set wheels in motion. She said she’d discuss with the pharmacist and Dr. L (my oncologist).

We had a fabulous weekend back in NY, visiting friends and seeing a show and eating everything that crossed our path. My eye pain was manageable with Tylenol, and I even managed to do some of the driving — turns out having eye floaters doesn’t bother you as much in the dark.

When we got back, though, I felt like it was time to see Dr. H (the retina doctor). Because of my insistence that I didn’t need my pupils dilated at every visit, he had stopped. I knew this visit would be different, though.

After he took a closer look, Dr. H informed me that I have swelling in my retina. He presented a few scenarios, including increasing the steroid drops to every two hours, or else a steroid injection into my eye. You can guess, I think, which one I opted for.

I wrote back to Nurse Practitioner Megan and let her know the result. She informed me that the team (which now included my beloved Dr. P, with whom they consulted) decided that I need to get off of Tafinlar and Mekinist, and switch to newer versions of drugs that do the same thing (Braftovi and Mektovi).

So it looks like maybe this is goodbye, Tafinlar and Mekinist. You’ve served honorably since 2015, bouts of iritis notwithstanding. I will miss your name that sounds like a Norse god’s, Tafinlar, and I’ll never forget the short work you made of my brain tumors. Mekinist, I will not miss the way you needed refrigeration and your tiny pills that loved to jump out of my hand while I gathered the rest of them.

While this is far from negative news, it is a major shift in my treatment, and one that I had hoped to avoid, in the interest of not fixing what isn’t broken. But the picture of my swollen retina today convinced me this wasn’t something to ignore.

I hope Braftovi and Mektovi (names that belong on a Greek restaurant menu) will be good to me.

Uncertainty principle

Ghastly Arches, by Lenny K Photography on Flickr, licensed under Creative Commons

My eyes have now not been quite right for three months. This is a side effect of my targeted therapy, but is starting to take on the proportions of a primary illness in the way it disrupts my normal life. It is hard to feel grateful to be alive when your eye hurts like someone has been punching it, or when you go outside for a walk to take your mind off things and the busy progress of spidery floaters across your field of vision almost dooms the project at its outset.

To say it’s just my eyes that aren’t quite right is a great simplification, although healthwise I am nominally fine. I am fine, but the pain in my eye socket keeps trying to tell me maybe it’s a tumor, and maybe something is very wrong again.

Then there is the exhaustion that arises from that fear. The knowledge that I should call the doctor if I’m not well, which resides alongside the knowledge that the following trajectory awaits if I do so: 1. Pay $50 co-pay just to walk in the door. 2. Endure waiting room wait. 3. Endure eye exam where I feel frustrated because I can’t actually see the letters clearly but have undergone the exam so many times that I have memorized the lines. 4. Await the dilating drops, sit in waiting room trying to read as reading slowly slips out of grasp, not to return for many hours. 5. Hear the doctor pronounce everything looks fine, he’s not sure why I have pain, Tylenol will help with that. 6. Weeks later, pay the bill for the portion of the visit insurance won’t cover. 7. Thread of messages with the nurse practitioner who doesn’t want to tell me what to do because she isn’t an eye expert so just watches and waits while I try to get treatment for the condition, either taking meds throughout or pausing them for a couple of weeks. 8. Experience more eye pain, start again at step 1.

This week the feeling of futility that arises when I go through the above steps has kept me from doing very much, even while there is much to do. Young J’s bar mitzvah is less than two months away. I need to get some business affairs in order. I should be working on my own writing in the absence of translation work (which I should be looking for). My grief over losing my father still crops up in unexpected places — like mid-contortion in my stretching class yesterday, when the awareness that we’ll never be in the same room together again suddenly stabbed my consciousness, then left.

So I got dressed for a walk today, but when I found myself still pinned to my bed an hour later, I asked J to help me. He made me get up and walked with me a short way. The weather was beautiful and it was overcast, which meant not too challenging for my eyes, but all the floaters almost made me turn back.

J left me at the turn and I planned to walk further. I decided to listen not to music, but to an unusual radio piece. It’s one of a trilogy of radio documentaries produced by the unorthodox pianist Glenn Gould for the CBC in the 1970s. I had already listened several times to the first episode, “The Idea of North,” a series of interviews about life in Northern Canada. Today, I listened to “The Quiet in the Land,” about a Mennonite community in Manitoba.

Something about the aural chaos helped soothe the visual chaos I am experiencing. There is the clink of dishes at a café, the ocean, a sermon fading in and out, a choir. You can’t let yourself get too wrapped up in any one thread because it will inevitably get lost in the soundscape.

Gould produced these pieces in a style he called “contrapuntal radio,” layering and overlapping voices and making them fade in and out, much as Bach did in his music. In the wrong frame of mind, you’d think you were going mad listening to these radio pieces.

But I was in just the right frame of mind today. I’ve spent my life feeling like an outlier. Even in my cancer treatment this is turning out to be so. I haven’t suffered the side effects that the majority of patients do, and the one that’s making me suffer the most was only found in 1% of the trial group (which must have meant one person). As a result, eye doctors may or may not have familiarity with how to treat and follow the condition. Oncologists have no idea how long patients need to stay on the medication, because the medication hasn’t been around long enough for this to be established, and if it ain’t broke, why fix it?

When I got back from my walk, the unusual aural surroundings had jarred something else loose in my brain, which was this poem by the late Stanley Kunitz.

I’d always focused on this poem as a lamentation. Today, it feels more like an exhortation. I live each day with the knowledge that many people in my situation haven’t made it this far. I still don’t understand why I have, and maybe there won’t ultimately be a point to my understanding it. I have to live in, and with, the layers.

On ne joue pas avec la liberté

Strange days in Washington, in London, all over the globe. Strangely warm, but there is also a chill over everything. Could this be the prelude to the end of the world? This feels like the first few bars of it. A sixteen year old takes the stage to call out world leaders, who smile and nod and cite her bravery while driving their motorcades over small islands where cars are supposed to be banned.

Young J came home from school the day the Ukraine call transcript was released and read it aloud dramatically, occasionally collapsing into giggles at the way two presidents on the phone sounded, in his words, “just like girls at a sleepover.” Sadly the lightness passed, and the feeling of being stuck persists. The United States that my family chose as its home needs to eventually go back to feeling more like an upgrade than a lateral move. I’m dubious, but hopeful. I’ve been listening to this song by Stereolab a lot.

You don’t play around with freedom

You can’t divide it up like equality

It can’t be bought or bartered for

Nor exchanged for security

Young A reacted to impeachment news by wondering whether we’d start going to marches again. I assured him he’d get the chance. He worried about the noise, so I told him we’d wear earplugs.

In the bigger picture, I am marking one of my many cancerversaries today: it is five years today since I got what was to be my second of four doses of ipilimumab, the immunotherapy that was intended to fight off melanoma that had metastasized to my lungs. Instead, that was my last dose. I developed a serious case of colitis a few days after the infusion (which I later learned can sometimes be indicative of a “complete response” to treatment). Eventually, Dr. P had to call it and suspend further treatment. I got miraculously better by Thanksgiving that year. Even more incredibly, by April 2015, my lungs were officially NED. No trace of tumors anywhere in my lungs, and it has remained so. (My brain tumors had a separate timeline.)

I’m feeling a bit transitional these days. I recently finished a translation job I’d been working on since May, and am waiting on feedback from another one. I haven’t been letting myself write lately, although I feel the urgency to do building in me like steam. I’m trying to make some crucial changes to my diet and lifestyle because it appears that I’m getting to be here for a longer haul than it seemed was the case four or five years ago. It’s easy to make excuses instead of making changes. But the gift of a longer life isn’t something to trifle with. On ne joue pas avec ça.

Tired but happy