My scans were fine. Before anything else I should always tell you that. (What I might say in a quieter voice is that at this point, I am expecting them to be fine, and that might invoke the Evil Eye, and so forget I said anything. Ptuh, ptuh, ptuh.)
It was Mother’s Day and I was celebrated and it was lovely. There were pancakes. There were greeting cards. There was Mexican food. There was a chamber music concert to attend. In the evening, J and Young J went to serve at a soup kitchen with a group from our synagogue, so Young A and I hung out. We tried playing badminton but the wind blew over our net incessantly. So we took to the woods. It is not easy to get A out of the house. I appealed to the fact that it was Mother’s Day and he needed to do what I asked. The woods were lovely, we don’t visit them enough considering how close they are. There were white flowers everywhere, and then, suddenly, right by the trail, there was an uprooted tree with a huge rock embedded in its base (see Figure A).
I thought it was quartz. I sent the photo to a geologist friend when I got home, and she corrected me: it is feldspar. Being able to name it, I wanted it. Wanted to pry it loose from the dead tree and bring it home to rest in our garden. It had been a while since I felt this emphatic about anything (see previous post re: Lexapro, more on that in a moment), so I considered it a good sign. Something to not ignore.
The next evening, while J. played basketball and Young A had his bar mitzvah lesson, Young J and I took to the woods. We brought a flat screwdriver and a hand trowel. We managed to loosen a lot of dirt, but the rock wasn’t budging. We passed a clearing by the creek where there were about eight deer resting, frolicking, existing without human interruptions. I felt very fortunate to have such easy access to these woods.
It wasn’t until a day and a half later that I got back to the woods. Work intervened, and the quest for more work, and also driving children around. Yesterday, mid-morning, I texted my neighbor C to see if she’d come to the woods with me to see about that rock. J also happened to be available. So the three of us headed to the woods, C bringing her pickaxe. I had fallen down a rabbit hole on YouTube, watching videos by people who describe themselves using a word I hadn’t known, rockhounds. I learned many things that I didn’t particularly need to know, including what the best tools are and that you should always wear a reflective orange vest when rockhounding, because that way no one will ever question what you’re up to.
J took up the pickaxe and in a moment, he’d loosened the rock. Then there was the matter of getting it out of the woods. He hoisted it up on his shoulder and, with a few breaks, managed to get it to the trailhead. We all walked back home, and I brought the car to pick up our treasure. Now it’s sitting in the driveway awaiting a good spot for it in the flower bed. I’ll try to clean it with a combination of water, white vinegar, and dish soap, because that’s another thing YouTube taught me about rocks.
I’ve been feeling very low energy and having a hard time getting through the viscous liquid of days. Lexapro has evened out my emotions, but the cost appears to be motivation and creativity. I’m not enjoying this way of being. I feel estranged from myself. So I told my new doctor that I’d like to stop taking it. I’m currently tapering off it over the space of a week.
Today I went to see Dr. L for my followup appointment after my scans. All was well (but I already knew that). I was prepared with my big ask, which was to decrease the frequency of my scans to six months. It turned out to be not much of an ask at all! I won’t be scanned until November. Now the period between my lease renewals extends, from four to six months. I don’t think I’ll mind at all.
Also, Dr. L is working on setting up a new study of the ctDNA blood test I’ve been getting, and I qualify for the study. I’m excited to be a participant and give something back. I’ve been so fortunate, and hope this study will help future patients and survivors.
This Saturday I’ll be walking 5K around my neighborhood as a virtual participant in the Melanoma Research Foundation’s Miles for Melanoma fundraiser. I don’t like making a habit of hitting people up for money, but I know this is a good cause. If you are in a position to donate any amount, I’ll be so grateful. But even just your leaving a comment here will be a welcome sign that you’re here reading along after all this time… We’ve been through a whole lot together. (Almost as much as that chunk of feldspar and that fallen tree.)
I’ll admit that the image I was hoping to find was one of chocolate spread on bread. That’s probably more my speed these days. But who could resist this building being overtaken by flowers in spring? And its evocation of Venice and all that implies in the imagination (which is very different than the Venice of reality, I know).
It’s been a while. Many things have happened, including a ghastly and unending war in Ukraine, while in the larger scheme few things have happened. Most recently, we celebrated Passover. And just as the holiday began, I marked (or did I celebrate?) a double cancerversary: April 16 is the day my original sentence of malignant melanoma was handed down in 2013. It is also the day my brain tumors were discovered in 2015. I continue to be here, tumor-free (let’s hope — scans coming up next week). And with slight modifications to my person. There’s a slight scar on my chin now, the product of a bad fall I took at the beginning of a solo trip to Italy in February, a trip which now seems like a dream — and not only because my phone died, taking with it all of my un-backed up photos dating back to last June. My eyeglasses broke in that fall and when I got home, they were miraculously mended, something the optician in Italy didn’t think possible.
My glasses are now the source of some discomfort because they are no longer the right prescription for me. At the beginning of April, I had cataract surgery. I formed a precocious cataract at age 50 because of the ongoing inflammation caused by my targeted therapies (which I’ve now been off of for two years). Dealing with the inflammation required long stretches of prednisone eye drops, and those caused me to develop a cataract.
I was apprehensive about the surgery — I mean, it’s one of the most commonly performed types of surgery and folks much older than me sail through it all the time (including my own mother, last fall). But I am far too familiar with this scene from Un Chien Andalou (strong content warning) and desperately wished, as we drove over an hour to the surgery center, that I had never seen the film. My experience was absolutely fine, the anesthesia did its job and the nurses were wonderful. I even remember what the surgery looked like (but luckily not what it felt like): the process of the clouded lens being removed was like a psychedelic 3D light show. And then the new lens was placed and immediately I could see clearly again, without feeling like someone had rubbed Vaseline over my eye.
And so it begins, the slow process of replacing the parts that go bad. I remember how proud my father was of his two implanted devices (one, a stimulator that interrupted pain signals; the other, a pacemaker) that made him a bionic man. Of course, those devices made it more difficult for him to get the MRIs he needed towards the end of his life, so those devices turned out to be mixed blessings. Now that I’ve had one part replaced, I’m no longer dreading this process, but I do hope I can avoid any metal implants.
In a slightly more metaphorical sense, I’ve done some work towards replacing bad feelings. I started taking Lexapro at the end of March. I started slow, cutting the pill in half. I was only meant to do it for a week, but I extended that period, because I was also on a short course of oral prednisone around the time of my cataract surgery (another tip of the hat towards my outlier status, this was recommended to prevent any kind of inflammatory flareup, and it seems to have worked). The prednisone dosage wasn’t particularly high and I wasn’t as jumpy as I’d been on steroids in the past, but I wanted to perceive the effects of the antidepressant independently from the magical overachievement pill that is prednisone.
So I’ve been on Lexapro for a couple weeks now. And its main effect is that I’ve generally become an easily spreadable product, more like smooth peanut butter than chunky. I’m not getting stuck as often. I’m not getting angry as often. I’m not beating myself up as badly. My doctor, of course, suggested that I try therapy as well. I am still not so sure about that piece — I feel sure I was really just in need of a chemical boost. It also turned out I was quite Vitamin D deficient, so I’m working on that, as well as lowering my cholesterol via oatmeal. It appears that I will get to stay on this planet for a while, so it’s time to refocus my energy on proper maintenance. (I am still not quite back to getting regular exercise.)
At the end of March, melanoma took away someone I’d met on social media. Miles was a much beloved creative person, and a close friend to hundreds. He was able to make his exit on his terms, in his own home, with loved ones by his side. I’m sorry that the available treatments weren’t enough to save him from the beast. I am glad I got to know him a little bit.
I’ll try to remember to post next week’s scan results on the About page, as I’ve been doing for years. I’ve been a poor blog poster but I’m not going to beat myself up about it. Life constantly intervenes, and I am grateful for that.
We’re about to finish the calendar. I tend to reject the imperative to take stock of myself at this time of year, since I prefer to do that in the autumn when the Jewish new year rolls around, with its generous ten days to reflect (between the start of the year and the confirmation that you get to see it through).
We aren’t up to very much over this holiday break. We were supposed to be traveling in Israel, a family trip that the pandemic has canceled twice now. Instead, we’re home and the sudden appearance of the omicron variant has us recalibrating again. At this point it seems clear we’ll all get covid. It would be nice to wait until the omega variant, which we can only hope is even weaker than omicron. I’ve decided to book a solo trip to Italy for February, to attend a wedding. I am hopeful it will be able to go on as planned.
I heard from a friend, D., whom I hadn’t seen in well over thirty years (except on social media). She was going to be in our area visiting with her family, so we made tentative plans to meet up. This weekend, the plans became less tentative. They were going to be hiking at a park very close to us, so it seemed like the perfect opportunity to a) meet up with D. (and her husband, whom I hadn’t met in person and who has been through some considerable medical ordeals of late) and b) interrupt the kids’ sedentary lifestyle and suggest to them that they don’t need to be Indoor Kids forever. It helped that the weather here reached over 60 degrees over the weekend.
D., her husband and son, and extended family were planning to hike on a trail I’d heard about but wasn’t quite sure I was up for. I figured I’d start the hike and see how it went and bail out early if necessary. I received a pair of fancy collapsible hiking poles for my birthday, and was keen to try them out. The poles and my hiking pants (and a pack with a few snacks and one bottle of water for the four of us) were the extent of our preparation for the hike. I do not own hiking shoes, so I wore running shoes (which have been proving a poor substitute for hikers for some time now).
Did I mention that I’d also taken a rapid covid test, since I had some cold symptoms the night before? The test was negative, and I didn’t actually feel sick, but my doubts lingered. It felt like I was doing not just one wrong thing, but a series of wrong things.
I didn’t want to let D’s husband down though. I knew he’d read some of my blog posts during his own ordeal (which also included steroids and gamma knife surgery) and that he very much wanted to meet me. I’ve been following his own story, and felt the same. I just wasn’t sure about the hike.
We met up, hugged (masked), and set out for the trail. I took out my hiking poles and set to figuring out how best to use them. It wasn’t intuitive. I probably should have watched a YouTube video. (How did we ever accomplish any new thing, before we could see it done perfectly on YouTube?) I decided to treat the poles as extra limbs and use them for support when I was climbing between rocks. I started to feel less awkward and like maybe I was getting the hang of it.
And then we got to a section of the trail where the poles would be useless. I folded them up. It was just about an hour of pure climbing, not many dirt paths. Some of the trail was near the edge of a cliff overlooking the Potomac River. I panicked a few times. I was still wearing my mask, but eventually gave it up. Did I forget to mention that my cataract has gotten worse, and I can’t see very well from that eye because of the blurring and the glare?
I remember a similar situation a number of years ago. It was November 2015, shortly after my second gamma knife surgery (which was the final Dramatic Event of my active phase of cancer treatment). We were visiting my family for Thanksgiving and took a day trip to Shenandoah National Park. We set out on a hike that didn’t seem challenging, but eventually involved scrambling on rocks to access the view, which really wasn’t to be missed. I remember feeling the same degree of panic then. I wasn’t prepared, I felt stuck at various points, and I have no idea how I got through it. There are photos that show me trying to smile, but I remember my cold sweat.
Today I was multiply challenged, not only by my mask and bad footwear and poor eyesight. D’s husband had declared that hiking this trail was a bucket list item for him. This sent me into a reflection about my own trajectory from illness. I knew exactly where he was along his trajectory: the place where you can’t quite believe what you lived through. It makes everything urgent and exciting! You are alive and there are things that can’t be put off any longer!
There is absolutely no problem with this approach. It got me through a grueling 25 mile bike ride a year after my brain tumor diagnosis, after all. I get it. I’ve absolutely been there. My problem today was facing someone who feels this way about life — emphatic about living it actively, not putting things off any longer — and realizing how far away I’ve gotten from that feeling myself. It’s not that I am no longer grateful — it’s that I got tired. Old. Out of shape.
I managed to lurch over the rocks and then climb a rock face that almost undid me, especially a point mid-climb where I needed to power through and suddenly felt only weak and incapable. J. helped me. Once we were up, I bailed out of the trail at the earliest opportunity, joined by Young A, who never, ever misses a chance to do less exercise. We sat on a bench for a while. I was dismayed to see that we’d only walked 1.5 miles total. It was almost all up and down.
Walking back to the parking lot after the hike, I was catching up with D. about what’s been happening in her life. She mentioned that when she was dealing with terrible pain from a herniated disc a number of years ago, she reminded herself that her troubles were not so big compared to mine. That made me feel awful, because at this remove from my own suffering (such as it was, which as I recall it now was definitely not on the order of herniated disc pain), I certainly wasn’t prepared to hear that anyone would qualify, or minimize, or discount, their own suffering because of a perception that mine was greater. Earlier, I had asked her husband to guess how many nights I’d spent in the hospital during my cancer. (He’d had to spend a lot of time in the hospital.) He guessed 75. I felt terrible telling him the truth: only two. Once when my lung collapsed, another right after they found my brain tumors. I had outpatient cancer. I got off easy. What the hell was I complaining about back then?! I guess I should go back and reread my posts here, because I don’t feel full of empathy for the person I was back then. In fact, I barely remember her.
It took a little while before I stopped being teary and feeling defeated after I bailed on the hike. I sat on a bench with Young A and looked at the water on the canal, calm and untroubled glass. A few raindrops fell. People walked by with adorable dogs. We chatted. We wondered how long the others would be. Young A went looking for them, stayed away a while, then returned. It got colder. I tried to feel happy we’d come out for a hike, but my body was bruised and broken, and my ego was definitely shattered.
When we got home from the hike, and I finally took a restorative shower, this song popped into my head.
Restless eyes close, maybe it'll go away Please rest tomorrow, bring a satisfying day The restless urge of love that's worth the burning for Surely it's that one comfort love to give you more
Any thought could be the beginning of the brand new tangled web you're spinning Anyone could be a brand new love Any tie that holds can be broken, tear your bitter world to the open Anyone could be a brand new love
You won't be the first, your twisted change is normal gossip dirt Whispered to the nodding head Thrilled you fell apart, instead of them But they will Cause any hope for love can be killed If you need a different face, it's definite time to destroy this place
Any thought could be the beginning of the brand new tangled web you're spinning Anyone could be a brand new love Follow what you feel, you alone decide what's real Anyone could be a brand new love
The song embodies the duality of Sebadoh’s work, which attracted me to the band initially: sensitive lyrics accompanied by music by turns soothing and angry and angular. The lyrics to this song have previously suggested to me a cop-out, a guy making excuses, someone trying hard to cover their tracks.
But not today. Perhaps it’s the influence of the memoir I’ve been reading (Ladyparts by Deborah Copaken), which narrates a life in surgeries and heartbreak and lost jobs — and the long, torturous process of coming into one’s own, alongside the near-impossibility of being a woman who can find meaningful and fairly compensated work in the U.S., and most of all, affordable healthcare. Perhaps it’s that I spent the entire hike indulging in the act of self-loathing, an act I’ve become exceedingly good at.
I need a brand new love. And that new love needs to be none other than myself. I have wasted years, years I am lucky to have had, torturing myself in secret and in public for the many things I am not, the things I have not done, the things I cannot or will never do. I am overdue for a breakup with that feeling, and now I have an anthem for it.
A letter I wrote last night to a most exceptional nurse practitioner and friend, Kathleen Madden of NYU. She is part of the amazing team that helped make it possible for me to reach the age I have today.
I hope 2021 has gone well for you. Although my year began with a Crohn’s diagnosis and is ending with the certainty that I’ll need to undergo cataract surgery in the new year, I really can’t complain. I can’t complain because I get to still be here. Tomorrow, December 13, I turn fifty years old. (Sometimes it is good to have a late birthday, and watch your peers get old before you do!)
It wasn’t a given that I’d get to see fifty when I was diagnosed with melanoma at age 41. And it was through unbelievable good luck, which included being referred to NYU to the care of incredible people like you, that I am still here.
While I seem to have reached the more permanent phase of survivorship these days, I will never stop being nostalgic for the days when I got to come in and see you and discuss life, the universe, and everything (and most especially Generation X). Those visits, full of truth and hugs and plenty of laughter, were the brightest spots of a terrifying and unsettling time of my life. Thank you for meeting me there and reassuring me things would be okay. They have been.
From the bottom of my heart, thank you. Happy holidays and all good wishes for you and yours for 2022.
(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.)
This certainly seems to be the week for it, so I’m going to blame Mark Zuckerberg for the way I’m feeling right now. No, the Facebook outage did not depress me (in fact, it prompted a friend and I to commit to “Zuckerberg-free Mondays,” which start next week). Nor did news of the evil behind the scenes at Facebook particularly surprise me.
Instead, I am laid low because a musician whose work I have loved for most of my life died suddenly this week. That news alone would have been enough to put me in the dumps. But because of Zuckerberg’s infernal machine, I not only heard about his death — I had been able to connect with him as a Facebook friend a few years ago. I only managed to see his band perform live once. But suddenly, Pat Fish was among my friends on Facebook, right there alongside my mother and my preschool classmates and my online pals.
This was exciting, because now I could tag him whenever I posted a song of his that I appreciated. So I did, not expecting much response, but often being pleasantly surprised to get one:
I’d loved the different iterations of Pat’s band, which was called the Jazz Butcher or the Jazz Butcher Conspiracy, depending on the release, since hearing a song of theirs on the radio in high school. The track, “Hungarian Love Song,” made you want to dance, but not the way people danced in clubs. It made you want to learn a form of dance you’d never even seen before. The lyrics cheekily described a love affair leading to cannibalism. My teen self, ever alert to quirkiness, responded immediately, and I set out in search of the album the song appeared on. It was never easy to find Jazz Butcher releases, and that’s the only one I have on vinyl.
As I delved deeper into the Jazz Butcher’s oeuvre, I found a band with multiple personalities, my favorite kind. They could rock hard but also were liable to charm the pants off you. There was a good deal of saxophone, but it wasn’t deployed in a cringey 1980s way. In college, finding out that someone I was interested in owned a Jazz Butcher cassette raised my interest in them immeasurably (whether deserved or not). There seemed to be a Jazz Butcher song for every mood I had. Like one, simple on its surface, sung from the perspective of penguins (“We are penguins./Only penguins./We are flightless./We are standing in the snow/Without food./`Coz we’re penguins/It’s what we do./On the ice floe of unknowing./And it’s freezing…”) that disarms you with its poignancy. Danceable numbers like “She’s On Drugs,” narrating a woman in the midst of collapse with ranginess and humor — but remaining ever the gentleman. There are lots of angels in the songs. And there is Shirley MacLaine. This music has accompanied me through adolescence, college, and my first experiences with independent living, heartbreak, ambition, relationships… all of it.
J. recently got us a turntable, after many years of living without one, and I cued my one Jazz Butcher album up just the other day. As I just wrote to a friend who is also mourning Pat, “I miss all of it. I miss the world how it was, where you would put a record on and just sit there listening to it. It wasn’t a backdrop. It is astonishingly hard to find the time for that now.”
The same weekend that I listened to this album for the first time in ages, Pat was to planning to play a live set on Facebook from his living room, which he dubbed Fishy Mansions. I’d put it on my calendar, and planned to tune in to hear him for the first time since he’d done a similar gig during early pandemic times. I knew the band had recently recorded an album and was hoping he might preview a track from it. Instead, Pat came on to say he hadn’t slept the night before, that he’d had sleep apnea, and he was sorry, but he wouldn’t be able to play for us. He was sipping a pint, as always, and cuddling his black cat, Raoul, as always. He seemed to be in some respiratory distress, though. I was unnerved, because a couple of years ago, he’d been treated for cancer. I identified with him on that level, as well — we’d both emerged from cancer.
Since I added Pat as a friend on Facebook, I got to know him a little bit. The first thing to know was that he was a huge fan of cats. In reading posthumous tributes, I’ve lost count of the number of people who have mentioned that he wrote them to wish their cat a happy birthday, or commented on a cat photo they’d posted.
I didn’t post any cat photos. All the same, I unexpectedly found myself on the receiving end of unsolicited reactions and comments on my posts from Pat. Supportive ones when I posted about being a cancer survivor. But other things too:
All of a sudden, Pat was not just the source of music that had formed the soundtrack of my adult life. He felt more like a friend, one who knew how to contribute in just the right ways on social media. And Tuesday morning, I opened up Facebook to learn he was gone — suddenly, peacefully, but gone. I won’t have any more opportunities to convey my appreciation for what his music meant. I won’t get to watch him play another live gig from his living room, cat jumping in and out of frame.
A close friend of his posted to a forum today:
He was very happy over the last few months of his life, probably more so than I’d seen him in a long time, and it was mainly down to you lot. He was absolutely knocked out by your response to the “Live At Fishy Mansions” sessions. He was pretty much broke before he started doing them but everyone’s generosity with the tip jar meant that his financial problems were solved – the money from it kept him in food (not that he ate much!), beer, smokables, and beefy biscuits for Raoul.
So there is that: We, his fans, had helped him to not die destitute or in despair. It should feel like enough, to know that an artist who gave you so much felt acknowledged and tangibly appreciated at the end. But — all because of Zuckerberg — he was not just an artist to me. He was MY FRIEND. And he is gone when he should be here to receive the torrents of adulation that a dead artist gets.
Another celebrity I follow on Facebook (but who is not a friend), legendary illustrator Sandra Boynton, posted this photo yesterday, which she took in her office as the sun set:
Sandra, I promise, I will absolutely try. But it will take a while to get over this one. Rest well, Pat.
I had my umpteenth round of scans this morning (all is still well). Now that I’ve lived here for three years, a sort of routine has settled in to scan days. I do miss some things about scan day in New York — the anticipatory subway ride (when there were no delays), having my IV wrapped in a bandage for the strange six block walk between one scan location and the next, the mad dash to Dr K’s office as soon as I slid out of the MRI machine, and the fascinating images of my brain in cross section parading across the screen. I definitely miss my post-scan lunch of spanakopita and salad (or if I felt indulgent, fries) across from the hospital.
There are things about scan day here which are better — I live a ten minute drive from the scan facility. The disgusting barium sulfate of scans past has now given way to a drink I like to call “sketchy water.” Today, it was served chilled.
The wardrobe angle is where things get a bit odd. They are very vigilant about metal in clothing at Johns Hopkins. There is metal in everything these days, they insist. Even your underwear! Hence the sartorial innovation of scan pants (today they were shorts, in recognition of summer… which ignores the fact that it’s about 50 degrees Fahrenheit in the MRI room):
The full ensemble, complete with MRI-safe mask, is quite fetching:
Today the technicians had a hard time stuffing my unruly hair into the limited space for it before closing the plastic frame over my face. My ear plugs kept falling out. I felt a flicker of annoyance that threatened to turn into panic. But after twenty MRIs, was I really going to start having a hard time with it today? That was the extent of the pep talk I gave myself before sliding into the machine. All the rest of it — slight discomfort giving way over the course of 45 minutes to almost excruciating back pain, the failure of my brain to settle on a useful direction for a guided meditation, the resemblance of certain of the machine’s sonic patterns to music I’ve heard elsewhere — passed, as it always passes. Having frequent MRIs has taught me something about endurance which others learn via actual physical exertion… or by living under perpetual existential threat, which is certainly something on my mind as I read the headlines each and every day.
I’ve gotten chummy with one of the technicians, C. Today she greeted me like a friend, and said that it seemed like I’d just been there. (Four months’ time elapses differently during a pandemic.) While I was in an empty waiting room drinking my sketchy water, she stopped by to chat. She mentioned that a friend of hers yesterday told her how grateful they were for everything she does. She said, “People always just say that. They don’t realize that we all have families and homes and we have to do this.” She sounded frustrated. I can’t imagine having to put up with constant expressions of gratitude which miss the mark.
This week, a piece from the Atlantic caught my eye: “I’ll Tell You the Secret of Cancer.” As predicted, there were no secrets. It was a very handy explanation, for those who were not yet aware, that when one is facing cancer, a positive attitude and fifty cents will not even get you a cup of coffee. Any opinions to the contrary are unscientific, and potentially harmful.
I know I’ve made cancer seem like a whole lot of fun here on my blog. Time after time, this approach has helped me to find the humor in a crappy situation. Perhaps it has helped me gain some distance from the immediacy of the threat. As anyone who knows a comedian can attest, however, comedy is not typically born of a perky positive attitude. It is a technique that helps us twist unpleasantness into laughs, rueful as those laughs may be.
A week ago, I went to see my ocular immunologist, Dr B, up in Baltimore. I was consulting with her on the matter of a cataract I have developed in my right eye, as a result of prolonged use of steroid eye drops to treat the eye inflammation my cancer drugs brought on. (Currently, when I need to see clearly, I am closing my right eye.) She has a lot of experience operating on patients just like me who are dealing with eye conditions as a result of drug therapy or autoimmune conditions (I seem to fall under both of these categories, because I am actually that special).
Dr. B is also expecting a baby. She’s stopping work at the end of October for a few months. So I get to decide if my cataract is urgent enough to operate on right now, or whether it can await the end of maternity leave. Also, I get to decide whether having cataract surgery makes sense given the number of floaters I have in my eyes (also courtesy of all the inflammation). Dr. B warned me that after the operation, my eyesight will improve, and that will bring the floaters into sharper focus. I’m already swatting at them thinking they are mosquitoes. I can’t imagine how much worse that might get if I suddenly see their contours more clearly. I have a checkup with Dr. H (my local retina guy) next week. I’ll see what he says. He has mentioned in the past that there is a procedure called a vitrectomy that can help with floaters. It involves removing the vitreous membrane from your eye and replacing it. That sounds simultaneously cool… and also not at all anything I’d ever want to deal with. What I wish I qualified for is a complete eye transplant. A reset. (Unfortunately, Nurse Practitioner K told me long ago that cancer patients don’t get donated organs.)
So here I am. No more cancer. Other problems cropping up here and there to challenge my everyday existence. Also, certainty that I am lucky to be here having these problems I have. When I got home from my scans, J. had made me a delicious meal to break my fast.
It was a not-so-small, good thing. Then Young A showed up and I hugged him as my good scan results came through and I thought, but did not say, “I get to keep being your mom.” Young J texted me from drum line practice and when I told him my results, he replied, “Yay!”
I am not living the dream, but I am living a dream, a dream perhaps also once dreamt by all the people responsible for developing the drugs that got me this far, all the investigators and all the participants in clinical trials and the technicians and the clerks and the people who clean the research labs and thousands more people I’m not even thinking of. To all of them, thank you. It is a good dream to be having.
It is April 14th 2021. Day n+365 ogp (our global pandemic). I am pretty sure that I spent yesterday the same way six years ago — that is, lying in bed. Six years ago I either had a fever or felt feverish, I can’t recall. It was early spring and while my bed was located in a different state, and faced east, not west, the same blue blanket was on it. I was exhausted then, and I’m exhausted now.
Yesterday, I was feverish and exhausted and everyone was falling over themselves to commiserate, because it has probably befallen them too — it was nothing more than the Second Vaccine Blues. My day in bed was in the service of health, not illness. I temporarily got sick in order to stay well.
I didn’t do a thing all day yesterday. And I had plenty to do — paid work, unpaid work, and worrying about a loved one’s outcome from surgery (all going well). This is not to mention, of course, the significant amount of parenting I still insist on doing, in spite of my children now being old enough to empathize, to inquire how I am feeling, and to fetch me a pop tart and some apple juice at 5 p.m. without a hint of judgment, simply because it was the only food that sounded good to me.
Also reminding me how things were six years ago this week: J. He still has the broadest shoulders in the universe, which yesterday balanced an array of tech support tasks for his work, keeping after Young J to catch up on missing school assignments as the marking period slams shut, and then he went out grocery shopping and, when he got home, also made Taco Tuesday happen, without missing a beat. I could scarcely think of emerging from my blanket fort to eat dinner, but I’m so glad I did, because the tacos he prepared came the closest to tasting like those I ate at a taqueria in Guadalajara, on my very first trip to Mexico.
My Proustian recollection-through-taste then became a full-body experience of remembering the sudden chaos of my brain, the blooming trees on our block, and the appearance, just when we needed her most, of Mom. We walked down the street as quickly as I dared (which I seem to recall was very slowly) and took a selfie with a blooming tree.
I remember the excitement of that time, when I was probably the closest to death I’d ever been. But the steroids turned that gravity to gregariousness, and I remember a two block walk taking 45 minutes, simply because of all the people I needed to stop and talk to at great length. Perhaps the urgency my conversations had then, at its core, was a near-certainty that I wouldn’t make it?
I’ve written here about the incomparable drama of a sudden onset of metastatic disease. I can so easily imagine becoming addicted to that sort of heightened sense of life. Yesterday was not that. Yesterday was me in the same twelve-hour trench that millions of people have already experienced. We were laid low by the vaccine, but we resurfaced, just as others told us we might. We had the temporary experience of our immune systems flaring up, as I did in a much less benign way when I was on immunotherapy in 2014, but this time the effects were not long-lasting or remotely life-threatening. I am learning to be grateful for something unremarkable. Something relatable.
It’s a good time to celebrate life, and I will, later on this week, on April 16, anniversary of the Worst Possible Day — days, actually, since my initial melanoma diagnosis also got handed down that day. I am grateful for the science that made it possible for me to still be here, and to the scientists who went into overdrive to make our world safe once again. I will never stop marveling at their efforts.
(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.)
Things have really settled down for me in the past month. My Crohn’s is well under control thanks to medication, I’m no longer afraid of food. I am even halfway to vaccinated against Covid. Spring is coming on, and I feel pretty good. Ergo, it was high time for an attack of saudade.
I was born in Brazil — my family lived there for a couple of years while my dad was on assignment for work. We returned to the U.S. when I was six months old. I stayed just long enough to acquire Brazilian citizenship, which I keep meaning to officially renounce (it’s a long story). But I have now lived long enough to see how geography and genealogy leave their traces on you. I never saw my birthplace again, never spoke Portuguese, but I am drawn to Brazilian popular music so strongly, it sometimes feels as though in a past life I was a bona fide Brazilian.
This year I am staring down the (artificial) milestone of turning fifty, and I suddenly feel that there really is no more time to lose. I am trying to honor that sense of urgency, a sense I definitely had back when I was gravely ill, but which has steadily faded as the threat to my life has. I want to get more of my writing out to readers. And when something calls my attention especially, I’m trying to figure out why that is happening and what I might make of it.
A couple of weeks ago, I was looking up a song by Caetano Veloso that I knew from a live album, to see what the studio version sounded like. I wound up listening to the album, Bicho, in its entirety. It was recorded after Veloso spent a month in Lagos, Nigeria, and the influence of his time there can be heard clearly in many of the tracks. But the final song on the album, “Alguém Cantando” (Someone Singing), sung primarily by Veloso’s oldest sister Nicinha, is a quieter, more contemplative number — the perfect accompaniment to hours of brooding saudade.
Alguém cantando longe daqui Alguém cantando longe, longe Alguém cantando muito Alguém cantando bem Alguém cantando é bom de se ouvir
Alguém cantando alguma canção A voz de alguém nessa imensidão A voz de alguém que canta A voz de um certo alguém Que canta como que pra ninguém
A voz de alguém Quando vem do coração De quem mantém Toda a pureza Da natureza Onde não há pecado nem perdão
Someone singing far from here Someone singing far, far away Someone singing a lot Someone singing well Someone singing is good to hear
Someone singing some song The voice of someone in this immensity The voice of someone who sings The voice of a certain someone Who sings as if for no one
The voice of someone when it comes from the heart Which keeps all the purity of nature Where there is neither sin nor forgiveness
That’s it. The simplest melody and the vaguest possible lyrics, perhaps deceptively so — the song applies to nothing and no one, and to everything all at once. The song is about The Song and The Singer. Nothing is especially unremarkable about it… until that very last line, which raises all sorts of questions. There has not been any hint of sin or forgiveness before that last line… or has there? A straight appreciation of the art of the song, and then the last verse sends the song spiraling into a different direction. If there is neither sin nor forgiveness, doesn’t this suggest that in fact there was, otherwise why bring it up? It calls into doubt the heart and the purity thereof. It calls everything into question that we’ve heard. Is this song actually a form of apology? (If so, was it a successful one?)
Once I heard this song, I found I couldn’t stop listening to it. It invaded my ear, occupied my brain, became an obsession. The only way to get out from under it was to: print out the chords, take the lyrics sheet down to the piano, discover that it was much too high for my vocal range, transpose it a bit further south on the keyboard, and begin my laborious process of learning to play and sing it. The Portuguese isn’t a natural fit for my mouth, so there are contortions I need to learn. There are places where I need to sustain notes, and I need to learn how not to run out of breath. The exhausting physicality of singing came back to me (I took singing lessons, briefly, in that long-ago time before Young A. was born). And then there is the emotional component of singing — I don’t often sit down to learn to sing a new song, but nearly every time I do make time for it, I am overcome by emotion and unable to sing, the first few times through. Some might say this means I haven’t been letting myself sing, and the release when I do is all the more intense. But after five, ten, fifteen times through, I find I am able to manage.
I started the day today with a list of things I wanted to have accomplished by the time I went to bed (cf. the whole turning fifty, no time to lose, etc etc). So you might say this song hijacked my day. Sure, I took a walk, I ate three meals, and I seem to remember speaking to other members of my family. But what I will remember about this day was sitting at the piano, trying not to trip over the unfamiliar sounds as I try out broken chord patterns that will not overwhelm the perfect simplicity of the original recording. Will the sound of my voice singing this song ever make it into the world? I can’t commit to a yes or no just yet. I’ll sing “as if for no one”… but maybe I’ll record it?
Happy Spring, everyone. (Unless it is Fall where you are. Happy Fall.)
I’m here to unload the contents of my brain after a dizzying few weeks. We have regime change at last, but it came too late to avoid a violent insurrection. We have lost half a million people to the pandemic whose year mark is fast approaching (for us, isolation began March 13). Texas froze over. A new Mars rover is roving. And I have a brand new diagnosis.
Although an immediate end to pandemic suffering is still not in sight, in my small sphere, I am happy to report Mom has gotten her first dose of vaccine and the second one is coming at the end of this week.
Another thing that happened in recent weeks is that I had my very first ctDNA blood test. ctDNA is a fairly new method of detecting tiny particles of circulating tumors in the bloodstream, and it is seen currently as an additional method for following up cancer patients. Perhaps one day, this “liquid biopsy” will become the standard of care for cancer survivors. I’d love to give some blood in lieu of the poisonous contrast dyes I get injected with every scan cycle (not to mention the radiation exposure). The good news came after about a week — my blood harbors no particles of tumors in it. Cool!
In recent weeks it was time to deal with other issues as well. After suffering digestive discomfort since last August, I was referred to a gastroenterologist to see what might be going on. An initial test indicated I’d need more testing, so at the end of January, I underwent my very first colonoscopy and endoscopy. As everyone who has been through these procedures knows, the preparation is the worst. I couldn’t agree more. By the time I arrived at the hospital, I was so ready to be knocked out, I was a walking Ramones song.
All was well until I woke up, reasonably clear-headed, and drank some cranberry juice. Once I’d gotten dressed, I waited in a chair for Dr. C to come speak with me. We had met once by video (an appointment to which she showed up one hour late; when I mentioned it, she snapped,”well, they added you to the schedule last minute” — so, clearly, it was my fault?!). This time, she walked up, said, “It’s Crohn’s, it’s probably not related to the immunotherapy treatment you had, my office will call you to set something up.” And then basically turned on her heel and went off to the next patient.
I woke up from anesthesia to a new reality: my new doctor simply did not have time to be humane, or human. I was a little unsteady, and they wheeled me out (hospital policy) to where J was waiting with the car. As the fog lifted, I found myself enraged. Nothing in my medical history thus far had prepared me for an encounter with such a highly-rated and at the same time poorly-behaved doctor — this was certainly not the kind of stellar care I received from Dr. P and her staff of angels (who probably ruined me for other doctors, with their unflagging commitment and compassion).
Dr. C’s office was not, in fact, calling me. I had to send several messages through the hospital portal before I heard back. In the meantime, it was easy to find evidence online of patients who’d had bad experiences with Dr. C, and also copious evidence of her engagement on Twitter. She’s apparently much more excited by doing continuing medical education for her peers than she is by treating actual patients.
But no matter, because I had already done my research and found a doctor at a practice closer to my house, Dr. O, whose video introduction on YouTube showed a practitioner who is patient-focused, who listens. I spoke with Dr. L over the phone, and he agreed I should switch to Dr. O.
Somewhere in the past few weeks I also saw Dr. H, my retina guy. Things have quieted down enough that I’m down to one steroid drop in my left eye every two days. I hope things stay quiet. At the end of my visit, I mentioned to him that I’d be going to see Dr. B, an ocular immunologist at Hopkins, to whom I’d been referred by Dr. C, the rheumatologist I consulted with a while back. I couldn’t be sure, but I sensed Dr. H was maybe a bit snippy when I told him I’d be seeing her. Whatever.
I drove up to Baltimore last week, the day after an ice storm. The parking garage I had to use was the same one we parked in when my father was dying. I still remembered my way around the hospital, unfortunately.
The visit to Dr. B was a wonderful experience, with kind and professional staff and state of the art equipment. I wasn’t expecting the number of tests that she’d conduct, but it made sense — I’m a very special snowflake in terms of the damage done to my eyes by my medication. Dr. B has about twenty patients on her roster who are, like me, dealing with the ocular fallout of immunotherapy or other cancer treatment. Her nurse asked me whether I was a nurse. Apparently I used quite a bit of terminology. (I’ve picked up some lingo in my long career as a professional sick person, I guess.)
Dr. B showed me images of the blood vessels in my eyes. Due to the extended inflammation in my eyes, the most peripheral areas no longer have blood flowing to them. It isn’t affecting my vision significantly, yet, but it’s very important to avoid any further inflammation. I drove the hour home with my pupils dilated, just as the sun decided to make its appearance after many days in hiding.
I did have a followup with Dr. C after my procedure, by the way, at which she laid out what she proposed as a treatment for the Crohn’s. She suggested starting with an older, oral medication, sulfasalazine. She intended to start me on a lower dose to see how I tolerated it, and then increase it. At the end of our chat, I informed Dr. C that I would be transferring my care to Dr. O. She was fine with it, but indicated that in that case, I should not start medication until I’d established care with my new doctor.
Here’s where I wonder aloud something I’ve been thinking about for a while: I have been a cancer patient for a long time now. Come April, it will be eight years. Has this prolonged experience with life-or-death situations made me an impossible patient to treat? I don’t even mean because of the multiple conundrums I bring to my caregivers. I mean because maybe having had cancer automatically makes you much more demanding? More uncompromising in terms of what behavior you will accept — or not accept — from your doctors?
As I settled into my new diagnosis of Crohn’s, a condition that is hardly mysterious and which many people around the world cope with, perhaps I was even, just a little bit, missing the urgency, the sheer drama of cancer? Obviously I have no desire to return to that type of drama. But the fact is, it’s what I know best. The idea that I could have a newly discovered chronic condition and not start meds for it right away was unnerving to me.
But Crohn’s is also a bit unnerving. Your digestive system turns against you at age 49? Just like that? Sometimes you’ll be fine and sometimes you’ll feel awful? As pointless as Googling my condition was when my cancer metastasized, so too is it pointless to try to Google what to eat or not eat when you have Crohn’s. It is highly individualized. Really no general guidelines beyond not eating too much at a meal, and what foods might help when you’re having a flare.
I couldn’t have imagined the timing of my visit to Dr. B in Baltimore and my first video call with Dr. O was important, but it turns out to have been. One of the things Dr. B made very clear to me was that starting sulfasalazine, as Dr. C had suggested, would probably not be a very good idea for my eyes. She asked to be put in touch with Dr. O to discuss my Crohn’s medication options.
This week, I met Dr. O. Her office had already impressed me by making sure they had all the records they needed before my appointment. Dr. O listened intently to me and asked questions to clarify. She admitted she wasn’t familiar with targeted therapy, so I explained it to her. She took many notes and planned to correspond with my many doctors, and most urgently with Dr. B. She prescribed probiotics, but warned me my insurance might not cover them. Sure enough, within an hour of my appointment, the pharmacist called to let me know the script would not be covered. But Dr. O did not leave me hanging. The pharmacist read me a note she’d added to the prescription, saying that in the event I couldn’t get what she had prescribed, I could use another, over-the-counter one.
It’s the little things, like that one, which build a patient’s trust in their doctor, because it meant she cared enough not to leave me hanging. It’s gestures, too — I saw Dr. B wiping down the chair in the exam room herself before I went in. That small moment showed me that she was more interested in just getting her patient in to see her than in feeding her ego by pulling rank and waiting for a staff member to do it.
I appreciate these things. I appreciate humanity in my caregivers. I think they appreciate my professionalism as a patient, which is definitely a thing I’ve had the opportunity to hone over the past eight years, particularly when my response to meds has gone off-script and produced side effects that very few people get and even fewer doctors see.
While I wait to start whatever meds are deemed appropriate for my Crohn’s and also for my eyes, I paw my way through my days with very little energy. This winter has sapped me of my last ounces of strength, motivation, and drive. I’m starting to look around and discover that there are a lot other people feeling this way, too: stuck, without energy, sapped of strength. It’s like a second pandemic, one of inertia.
This is what happens, I guess, when you internalize fear and stress for an entire year. When the very air molecules at the grocery store could be loaded with dangerous virus. When grandparents can’t hug grandkids for way too long. When kids only know their teachers in two dimensions (or maybe just one) and as a result feel zero accountability to them (and to the parents who keep trying to get them to be accountable). We just can’t go on like this, but we have no other choice. So we take a moment to look to our right and left, and notice everyone else is also lined up against the same wall we have hit so many times now. It doesn’t have any give, this wall, but we are all hitting it together. For now, that needs to be enough.
I went to see Dr. H (retina) for a checkup. You will recall he’s in the same office, although a different side of the office, as Dr. H (glaucoma). I take turns seeing them. The visits, unlike my scans, never sync up. Their computer systems aren’t on speaking terms. I don’t even know if Dr. H and Dr. H ever speak to each other. I prefer the staff of Dr. H (retina) to the staff of Dr. H (glaucoma), not only because I’ve known them longer but because they are, on balance, just nicer people. (OK, there was that one medical assistant who once whacked me in the head hard with a piece of machinery she was adjusting. But I have not seen her in the office in a very long time.)
The good news is that Dr. H (retina) feels my left eye is doing better and since the intraocular pressure seems to have gone up, I can reduce the pink drops from two times a day to once a day, but now he also wants me to use the blue pressure-reducing drops that I use for my right eye in my left eye. To try to bring down the pressure with one drop which is being caused by the other drop, thereby making my left eye into a chemical battleground.
All of this is pretty taxing on my brain and on the app I use to keep track of which of the four drops I need to instill in my eyes go where, and when. Perhaps I should just dispense with the drug names? That would leave me with the following schedule:
Morning: Right eye: blue, hold for 90 seconds, wait for 3:30, purple, hold for 90 seconds. Left eye: pink. Wipe out residue, then blue, hold for 90 seconds.
Evening: Right eye: white (fridge), walk upstairs holding for 90 seconds, wait for 3:30, blue, hold for 90 seconds, wait for 3:30, purple, hold for 90 seconds. Left eye: blue, hold for 90 seconds.
Is this any easier? I forgot to mention that for the glaucoma drops, you have to sort of press them into your eye for 90 seconds. Then wait before administering the next drop. Which means this entire regimen takes ages. And that’s if I don’t lose track of where I was in the process.
Dr. H (retina) also chose to inform me on the progress of my cataracts, which have developed from an overuse of steroid eye drops. They are definitely there. No need for surgery yet, just that sinking feeling of cascading medical conditions and the inevitable interventions to deal with them which will in turn cause their own problems.
Next week I see Dr. C (rheumatologist) and a couple weeks later, Dr. C (gastroenterologist). In between, I’ll see Dr. L for a video checkup, but before I do, I will head to the hospital in person for my first ctDNA blood test, a very new means for looking for evidence of disease. I’m excited and nervous to get the results, which — who knows? — might show no disease in my bloodstream. Wouldn’t that be something?
All of this thinking about life, death, and my eyes has, naturally, brought to mind a poem inspired by a headless torso. It’s just the right time of year to read it (I think), so here you go:
Archaic Torso of Apollo Rainer Maria Rilke, translated by Stephen Mitchell
We cannot know his legendary head with eyes like ripening fruit. And yet his torso is still suffused with brilliance from inside, like a lamp, in which his gaze, now turned to low,
gleams in all its power. Otherwise the curved breast could not dazzle you so, nor could a smile run through the placid hips and thighs to that dark center where procreation flared.
Otherwise this stone would seem defaced beneath the translucent cascade of the shoulders and would not glisten like a wild beast’s fur:
would not, from all the borders of itself, burst like a star: for here there is no place that does not see you. You must change your life.