The eyes have it

The Eyes, by Jack Sirichumsaeng on Flickr, licensed under Creative Commons

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.


obstacle, by spinster cardigan on Flickr, licensed under Creative Commons

We turned a page last night. It made the same exact whisper other pages turning in the past did. Time, currently, is a solid block of ice we’ve all been frozen into, and there is no point pretending any different.

Can you tell I’m in a fantastic mood today? The world wants to put the calendar behind it, but I awoke (later than usual, but I went to bed much later, too) to a little flurry of notifications from my medical portal. There was the matter of some test results that came in, as it happens, just this morning. So much for labs taking time off for the new year.

Don’t get me wrong, I don’t have cancer again. Definitely not cancer. But what I am dealing with has made life uncomfortable for some months now, and notwithstanding previous oversharing in this space, I find I’m simply not ready to discuss the details of my predicament. I imagine those among you who want to have already figured it out.

Two new specialists will now be entering my life, both named Dr. C.: one a gastroenterologist, and the other a rheumatologist. They are both members of the same team, and that team has come together to examine the long-term adverse effects of cancer immunotherapy, of which I find myself, suddenly and unwantedly, possibly Exhibit A.

Yesterday, though, I had my latest scans, which found nothing amiss in terms of cancer. My CT scan was unchanged since October, and my MRI, which had previously shown one tiny area of possible concern, was absolutely without problems this time around. (This almost made up for the extremely uncomfortable time I had during the scan, which, rather than being the meditative and relaxing 40 minute experience that it usually is, was freezing cold and aggravating.) Dr. P., who looks at my brain scans, mentioned during our video call that she’d really like the frequency of my scans to decrease.

The contrast dyes used in scans aren’t the healthiest things to have coursing through your veins on a quarterly basis, so hearing that I might get to have scans less frequently was a delightful bit of momentary fantasy. Dr. L. would ultimately need to approve less frequent scans, and I am just not sure that melanoma survivorship protocols are quite there. Simply put, as of right now they just don’t know how long I might be able to go between scans, perhaps because not so many people with the same treatment history as me have gotten as far as I have without a recurrence of disease. Every day I wake up healthy, I add to the data about melanoma survivors.

This morning it became clear to me, as I looked at my lab numbers, and saw one result that exceeded a normal value by ninefold, that I’m in fairly serious trouble. Not serious enough to interrupt the holiday weekend, I suppose, because there have been no calls from Dr. C.’s office. But grave enough that a condition I have been dealing with (irresponsibly, I must confess) since August, and which worsened over the past month, is most definitely no longer something I can ignore.

There Will Be Tests. There will be more medication and more copays and more doctors visits, both virtual and in-person. There will be vague mention of my condition and you filling in the blanks mentally. I’m praying that the medication doesn’t include steroids, because my poor system has had enough of those for a lifetime (although resuming steroids might liven this blog up temporarily, again, so there’s that).

I’ve spent the day in a funk since waking to that news, doing ill-advised medical research before I have a complete picture of what is wrong and listening to music that is my go-to when I feel bad, not because it makes me feel better, but because it lets me be in my feelings.

But as I started writing this, it occurred to me that this isn’t the first time my fortunes have changed radically, literally overnight. That happened to me in April 2015, when I heard there was no evidence of disease in my lungs and then awoke the next day to discover a dozen tumors in my brain.

It is important to differentiate — this is not that. This, instead, is the slow realization that my cancer treatment of six years ago may have turned out to be a Faustian bargain, and that I’ve been careening down the road towards chronic illness ever since, without realizing it. I took the success of my treatment, and I did not think of its potential consequences, because who does such a thing in the face of a miracle drug? What if it is never possible to figure out if this condition was caused by my treatment, or whether I would have developed it anyway? New questions keep bubbling up in my brain, crowding out the old ones, which were more along the more pedestrian lines of, “How long do I have?” and, “Will I ever get to meet my grandkids?” (When you’ve survived cancer three times, yes, these questions eventually seem pedestrian, boring, even cliché.)

Thanks for listening. Thanks for still reading along. Apologies to myself for not acknowledging some important milestones here, which I used to try to do with regularity: five years with no active disease. Turning 49. Young J turning 14. It turns out these things can happen anyways, even when unremarked upon.

Instead of punishing myself for not marking these moments in writing, I will just be quietly grateful they happened. And then resume being pissed off at my current predicament, but as always, and in spite of myself, hoping that all the unknowns ahead turn out to be less daunting than they currently seem. I hope any of what I’ve said can be useful to you this year, but no pressure. Have as good a year as you can. I hope you can get a vaccine as soon as possible, and that you finally get to hug the people you’ve been missing, if they haven’t already been taken from you. Personally, I will keep holding on, with gritted teeth and white-knuckled grip, for that.