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

Slow churning

It’s September. The gears that fell into disuse over the summer are slowly returning to motion. I wouldn’t say I have much resembling structure in my life at the moment, but I do have some work. It feels good to have some work. I may have some results to share soon.

The kids started back to school this week and J and I (well, I should speak for myself here) feel that wisp of bereavement that always comes with letting these larger and larger creatures out of our sight. Their absence during school hours isn’t anything nearly as complete as their absence when they go to camp in the summer. We can’t resume our late night schedules and we do have to attend to meal planning and the like. When the front door opens at 3:25 (Young J) and 3:50 (Young A), we have to be ready. Ready to chase off any storm that may have gathered during the day which might be easily dispelled by timely snacks. Ready to listen to what happened in their lives while we were apart, whether good or bad. Ready to make sure they aren’t forgetting things they need to read or calculate or write or do (although Young J gets more reliable about this every year).

I’ve been accompanying my long hours at my desk with a daily exercise routine that lasts only fifteen high-intensity minutes. It’s been going well, except when I skip a day (or as I did this weekend, skip TWO) and have to find the time to catch up. I am finally caught up. (And exhausted.) I am noticing some incremental transformation in my body, which is enhanced by another project I embarked on almost a month ago: Invisalign to straighten my crooked teeth. I’m in the third week (of 42 in all) and am already seeing changes. Exciting. (Of course, before signing on to such a long commitment, I hesitated: What if I straighten my teeth only to die of cancer? What a waste of money and time that would be. Eventually, I overruled this train of thought.)

Change is not always good, as I discovered recently when the health status of a loved one changed. In the process of their examining a possible genetic basis for it, some unwelcome news of cancers shook out of my family tree. I’ve now been referred for genetic testing myself, in order to find out if my genes might predispose me to melanoma (and other bad actors not to be mentioned here). The process will take a long time to complete and I’m not sure insurance will cover the costs. So that’s another thing occupying brain real estate. As is the fact that I’ll have to go to the hospital in Baltimore for these visits, the same hospital where my father died.

My eyes have been acting up since late July. I had another cancer meds-induced flareup of iritis in my right eye just before our family trip to California in August. I spent weeks putting steroid drops in my eyes and not taking cancer meds, but may have inadvertently made things last longer by: a) using drops that I knew were expired, when I had a brand new bottle ready to go; and b) not being diligent about the drops during the final week, when I was to use them once a day. (I stopped instead.)

As soon as we got back from the trip, I had a relapse involving both eyes. Now I have a retina specialist (because my ophthalmologist apparently grew tired of treating this condition). And last Sunday, I had to see one of his colleagues who was on call, because I’ve had a sore eye for days. It hurts when I move my eye, something that had never happened before with iritis. It slowed my pace of work down the past few days. Pain is exhausting, as exhausting as fifteen minutes of a high-intensity workout (which I’ve somehow kept up in spite of the eye pain), so I’ve spent a lot of time either sprawled in bed thinking about work or sitting at my computer not doing work. I called the retina doctor again today and after 25 minutes on hold I was instructed to “take an anti-inflammatory like ibuprofen” — which I am not allowed to take because of the targeted therapy! Tylenol has been helping a bit. So does trying to get my mind off it. So I am back to work today, and plan to do some cooking.

On Labor Day, while J took the boys to a baseball game, I spent a few hours researching my grandfather in order to write a short biographical essay about him. He was a Yiddish journalist in Argentina for fifty years, but began his life in Poland training to be a teacher, and along the way he worked with Janusz Korczak, a world renowned educator who ran a Jewish orphanage in Warsaw. Last year, I was contacted by someone whose organization is interested in translating a book my grandfather wrote in Yiddish about Korczak. My day of research this week led to some interesting discoveries, including a page from another book of my grandfather’s I had never seen before, and finding a brief biographical sketch online of my great uncle, who was killed by the Nazis in 1942. (Young A is named for him.) I had not realized that like my grandfather, he too had published several books. I had not realized there was an eyewitness account of my great-uncle’s murder in a book in Yiddish which is also on the Internet. (I wasn’t able to understand much of it.)

Finding evidence of my ancestors in the world — on the Internet, even — was exciting, but I kept feeling the impulse to call the person who would have been most interested to hear about it. In the process of writing up what I did, I referred to many emails from my father, and had to fight the urge to reply to them.

Then I went grocery shopping, and came home with an unripe pineapple. As I turned it upside-down inside a vase, a trick my father had come across for faster ripening, I suddenly burst into tears. “It’s not fair!” I kept repeating, as though I were eight years old again. It isn’t fair. He should be here. I shouldn’t be having to fumble my way through my grandfather’s life story without my father to correct me, to translate for me, to enlighten me.

I miss you, Pa.

Making Me Understand: “The Waiting,” by Tom Petty and the Heartbreakers

(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.)

I’ve been at the periodic scans thing for a while now. This November will mark four years since metastatic melanoma last troubled me. I have developed my rituals for scan days, as many people who have recurrent scans do. I have a preferred scan modality, MRI. You don’t fast for an MRI, and unlike with a CT scan, the MRI contrast coming through the IV doesn’t make you feel suddenly and creepily warm and like you need to pee. I love listening to the patterns of knocks and bangs inside the tube, and I find my breathing is slow and quiet. It’s like a sensory deprivation spa treatment. I am beyond grateful that this, not claustrophobia, is my default response to this particular type of medical enclosure.

After my MRI is over, I return to the comfort of my home to wait for a message on my app. This is an innovation over my NYC protocol, where I had to book it from the MRI facility to my neurosurgeon’s office, and sometimes be in for a long wait because there were never enough exam rooms. (For CT results, I waited a full 48 hours and however long the wait was in the waiting room of Dr P’s office.) The sad part about my new routine is I don’t get to look at cross sections of my brain on a high-res monitor minutes after it was scanned, or watch the doctor flip through to compare the images from that day with the ones from when I thought I was really screwed…

I used to have post-scan meal plans (usually Greek food), but today I really just wanted to get home. I also happen to be on deadline for a pretty big translation job right now. But I’m also in the middle of a 30 day fitness challenge which brings you a fifteen-minute long video to complete every day, and the link to that video actually expires if you don’t use it within 24 hours.

So I came home from my scan and did yesterday’s skipped high intensity workout in my bedroom (a mere 20 minutes before the link expired!)… complete with suicides, Russian something-or-others, burpees, and other things I instantly repressed but will remember when I wake up sore tomorrow. When I collapsed in my desk chair afterwards, I opened a new browser tab to hear the song I always want hear while waiting for results.

People who know my musical tastes (which may include casual but longtime readers of this blog) might raise an eyebrow. This is so mainstream. It’s musical comfort food. And because I can’t have any actual comfort food right now (see above re fitness challenge, plus I recently started a tooth-straightening regimen with Invisalign and can only take the trays out of my mouth for a total of two hours per day for eating), music is everything.

I liked this song long before I ever saw the video for it, but watching the video repeatedly has elevated the track for me. It starts with a flickering title card that looks like something out of a student film, and then the screen shows a moody black-and-white freeze frame of Petty, arm in midair poised to strike his guitar. Then everything turns to color and starts moving. Tom Petty was never one of my pinups — his smoldering looks at the camera in this video don’t do much for me, except maybe unsettle me with the emptiness of his gaze, and remind me of his senseless and untimely death.

I love the awkwardness of 1981 on display here — a space where classic rock encounters new wave and tries to enter into dialogue with it by awkwardly adopting its tropes. It’s a sort of ventriloquist act — these guys in their skinny pants stiffly maneuver around a set that’s meant to suggest something like art school, complete with primary color paint splatters and geometric shapes everywhere. But they’re still playing the straight-up rootsy rock n’ roll Petty made his name with! No synthesizer sounds or drum machines whatsoever.

Lyrically, the song isn’t too germane to my waiting for scan results… until it is. There’s the chorus, most obviously:

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part

But there’s a little cheerleading section here, too:

Oh, don’t let it kill you baby, don’t let it get to you
Don’t let it kill you baby, don’t let it get to you

I feel like Petty’s on my team, rooting for my scan results to be good. I wish he’d had someone on his team, not just rooting for him, but managing his pain medications so he could have avoided his fatal mistake. Thanks for this song, Tom (and Heartbreakers), and for keeping me company while I wait by the phone for what I hope will be, once again, a thumbs up.

Summer torpor

Ocean yearning

School’s out. The kids’ final report cards came in the mail… but they weren’t here to receive them. Last week, we dropped them off at camp for three and a half weeks. It is our summer vacation. Even though it’s the third summer in a row they’re gone, the sudden silence that descends over the house is still stunning. It takes time to get used to. The undone projects in our brains tumble forth, jostling for an opportunity to be addressed at last. But the pace is less frenzied. We don’t need to know in the morning what we’re making for dinner that night. I want to take things easy, but I want to get things done. I finally scrubbed the bathroom tile after weeks of thinking about it. But I also had a nice long chat on the phone with Mom, and while I was looking out the window, two Monarch butterflies floated past.

Lately I have felt my body less buffeted by the disease that insinuated itself some six years ago now, and more annoyed by normal signs of aging. A knee injury from last October doesn’t just get better on its own, I find, and the resulting inactivity has a cascade of negative effects on my wellbeing. So. Exercise. Diet. Structure. All of the things I’ve been putting off are no longer putoffable. My translation work has also been taking some interesting and exciting turns.

I wonder what the next few summers will bring, because I seem to have the luxury to, now. Come this November, the anniversary of my last gamma knife surgery in 2015, I will have been in remission for four whole years. That feels like an important milestone in terms of easing up on anxiety. My response to treatment is durable, and space age ideas are being tested for use down the road.

There’s a lot more I can be doing to “transcend the navel” and make an impact in the wider world. I don’t feel as strongly that I need to do that in terms of raising awareness about my cancer or its treatment anymore, per se — it’s a different world now, one in which I more often than not encounter people who are familiar with immunotherapy or targeted therapy, and who understand that what may have at one time seemed like a death sentence (Stage Four) may now (with a lot of luck) be merely a clinical label, applied to a patient who doesn’t do much more in a typical day than remember to take her pills.

I wouldn’t say that this is goodbye to the blog — writing here has absolutely sustained me over a number of years, and from looking at the stats I continue to see that people worldwide find their way to my blog to read particular posts. I hope they’re helpful. I never got around to classifying everything like I thought I would. (Life comes at you fast, and it’s hard to catalog as it’s happening.) But I think that overall, my focus is elsewhere these days — like how best to evict the current occupant of 1600 Pennsylvania Avenue.

I’ll check in when I have something to say and when I get scan results, as always. I hope you’ll comment when you have something to say. I’m doing well, and I’m wishing you well, too. Wear sunscreen.