Friday, October 13, 2017

Me and my Orchid Tumor

The Origin
Back in May, I felt something odd. I was pretty sure it was a tumor, but I also have a touch of hypochondria.
I had felt something odd in the same place a year ago and had it checked out. After a few minutes in the exam room though, the urgent care doc had me convinced not to worry about it. And I didn't.
Until May 18th, when I felt something really and truly odd.
Went back to the same urgent doc. In an even shorter exam, we decided that I needed to get imaging. And fast.

The Work-Up
Within three days, I was being examined by an ultrasound tech. I am grateful she did not remark on what she was seeing. I was fairly certain I had a tumor at that point. I had read enough about it by now to know that a key symptom was the complete absence of pain under circumstances where one should feel it. But, a haze of plausible denial was crucial for getting through the night. And the next day. During these days, I prepared myself, by saying "cancer" out loud a few times.
And I told my boss that bad news might very well be coming. And my parents.

The Diagnosis
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I waited for the diagnosis. And waited. I checked my health portal a few times a day. No news. A few days later the urgent care doc called. During a work party. That I was hosting.
He delivered the news quickly. Gracefully. And hung up.
There were to be follow-up appointments to confirm the diagnosis, but this is the moment I knew. I had no doubts, no plausible alternatives to cushion me from the inevitable.
I was wounded, as this photo I took moments after hearing the news shows.

At this point, I didn't feel like the tumor was part of me. And I think that's why I didn't think of myself as "having cancer". I had a tumor, a reminder of my embryonic origins, and I wanted it gone.

The Confirmation
No automatic alt text available.I visited the urologist. She wanted it out too. And on June 14th, she delivered a mass that pathology confirmed was a 4.5 centimeter orchid tumor. It's a boy!
I was relieved. It felt great to have it out. And it felt great to have a singular focus in front of me. I had one job, and only one thing on my mind: recovering from being attacked by a very nice woman with a knife.
My parents drove to Worcester to pick me up after surgery, and I developed a nice routine of sleeping, watching TV, and allowing myself to be doted on in the most beautiful place on Earth.

Looking back, I certainly didn't think of myself as a "cancer patient", or a "cancer survivor". I pretty much just focused on the task in front of me - getting back on my feet.
I wasn't really thinking about whether I had cancer, or had had cancer. Or if I should feel affinity with anyone else who had had cancer.
That, and every step of the process since May 18th, I was being fed bits and pieces of information. It was all I could do to keep up with what I had in front of me. And I needed some spare bandwidth to make jokes about it all along the way as well.

The Search for Information
Towards the end of my stay in Vermont, I began to read up a bit more on the tumor, mainly to satisfy my parents' curiosity. Early on, I had read up on what clinical trials might be available. And when I saw words like "bleomycin", my stomach sank, and I knew I had to just put it away, and work only with what was right in front of me. To make decisions one at a time, without thinking too hard about them, and definitely without looking back.
Now that I was going back in to the literature, I knew I needed to start out slow. With a review article or two. I found the claim that "the 20-year survival is indistinguishble from 100%" very re-assuring, and I repeated it often, to everyone who would hear me. But I was also reading about "surveillance", "recurrence", and "retroperitoneal lymph nodes". And for the first two weeks back at work, I had no patience for it. Instead, I pulled dozens of articles about seminoma and its management, organized them into folders, and read them. And I remembered everything I read. It was astonishing to me how clearly I could recall exactly what each of the authors had said. I knew where each cohort was located, how many people were in each one, and how the results differed slightly. And how the standards of care for surveillance strategies varied from place to place.
So, by the time I met the oncologist, I knew what I wanted to do, and I had the citations in my head to back my decision up. I was well versed in the arguments for and against each strategy.
I wanted no chemo, and no CT scans. Modestly spaced followup scans for the next 5 years.

The Oncologist
She was not down with my decision. She wanted to follow the US guidelines and do a series of over a dozen CT scans that would produce something like a 2-5% chance of inducing a brand-new tumor. I wanted to do something like the approach endorsed in the UK, Spain, and Norway, countries with much larger cohorts with much better follow-up than in the US (or anywhere else). They do many fewer scans, and over a shorter period. And they do it that way because they have found better survival and fewer side effects than the US approach. I even printed out a schedule to discuss with her. She declined to look at it, and kept repeating the guidelines. I was astonished. I was ready to discuss, to argue if necessary, to listen (if essential). But I was not prepared to find out I had a small role to play in my own care decision. I was furious.
She did agree to run my preference past the 'tumor board'. And I thought, who are they to decide? Can I trust my oncologist to fairly represent my concerns when she resisted hearing them? Can I appeal their decision? But decided in the end I had to stick to what's in front of me.

Midlife - Crisis Preempted
Oh, did I mention that I first met my oncologist on my birthday? My 50th birthday?
Which brings me to how I've been travelling through this experience.
I was not shocked by the diagnosis. I've heard almost everyone else diagnosed with cancer say that they couldn't hear anything else. I was a sponge. I couldn't learn enough. I wanted all the reports, all the lab values, all the articles.
I've often noticed that I've experienced many parts of this process like a road trip. I don't really know what's coming. I've heard some stuff from other people about what's on the road ahead, but there's nothing like seeing it for yourself. I find the anticipation of these new experiences thrilling, even when they are unpleasant in many aspects. And I find myself focused on the new-ness, the unusual-ness, and the quirky unexpected moments of these experiences more than on the pain or the uncertainty. Like when I was getting the ultrasound, I started laughing in the middle of it. I was annoyed by the sound the computer made every time the tech saved a picture. Bzzzt. Bzzzt. Bzzzt. Bzzzt. And I thought, why did they make it sound like a long series of errors? Denied. Denied. Denied. They could have programmed any noise. How about: Ding. Ding. Ding. A small thing would make such a big difference in the experience. And so that made me laugh.

Revising the Decision
Anyway, back to the decision about what to do now that I had no tumor, no sign of any tumor, a small likelihood of ever seeing this cancer again, and a life expectancy "indistiguishable" from someone who had never had a tumor. But somehow, I was still a cancer patient. With a big decision about how to "keep an eye" on things that might crop up in the future. I kept reading, and getting more and more details about recurrence rates, risk factors, short and long term side effects of the various options in front of me.
Image may contain: 1 person, smiling, eyeglasses and indoorAnd then the tumor board ruled. My preference was not an option. I had to choose between getting a long series of CT scans with an unacceptably high level of producing a new (and much less treatable) cancer, or I would have to take chemo. The chemo regimen was carboplatin 7xAUC, taken in two doses, three weeks apart. That chemo regime is one of the "light" ones, it has many possible short term side effects, a low risk of long term debility, and a not inconsequential risk of damaging my heart.
It took me less than a second to decide. I went with chemo. She didn't even have a chance to finish the sentence.

Chemo sucks
Image may contain: 1 person, cloud, sky, closeup and outdoorMy first dose of chemo was cool enough. I was back on the road, I had a reason to take myself out of the everyday, and to experience what was happening to my body. I cut my hair short as a ritual to prepare for the chemo. At first, there were no symptoms at all. Over the next few days, I became exquisitely sensitive to sunlight - I got a deep tan in a matter of minutes. I posted updates on social media because I needed to stay in touch. I needed to know for sure people were thinking of me. And I put on a brave face. Thumbs up. But looking back at these photos, I can see I wasn't as upbeat and perky as I felt. I was still able to put in a little bit at work, but that came to a screeching halt with the second dose.

Image may contain: 1 person, outdoorIt is painful to look back at this picture. I swear I was genuinely happy when I took it. I had just showered, and although showering and walking back upstairs afterwards had taken every bit of energy out of me, I felt clean, I had fresh sheets, I could feel the love of so many people flowing through me. And yet, look at that face. I thought I was beaming.

I spent most of the month of August in bed. Most of it sleeping. Some TV, some reading, but mostly just laying in bed resting. My folks were terrific. If this scared them, they didn't show it. We had breakfast every morning. And if I was feeling frisky, we would play a few hands of cards. We had dinner every night. And I shouted questions at Alex Trebek.

But honestly, the fatigue was terrible. For weeks, I couldn't do more than walk downstairs, eat, and I'd be gasping for breath by the time I got back upstairs to bed.
When I got back to work, I could only last about 5 minutes in conversation before my mind would clamp down. My eyes would flow with tears because I couldn't get words to show their faces. I'd have to explain that I needed to be alone.
I couldn't do any programming. I made spelling errors I've never made before. Lots and lots of spelling errors. But it's all part of the road trip. I found myself fascinated by what I could and couldn't do, and how long it took for my brain or my lungs to wave the white flag. The spelling errors were telling me about how my memories are organized, my lungs were a governor. Exhaustion is sweet in its way. It is a clear and unmistakable break. It gives one full permission to stop. Stop and experience the familiar world as alien and new.

I've been back teaching for five weeks now. The first two weeks, it was all I could do to show up and mumble through the slides. Someone in my cancer support group suggested methylphenidate, and the requisite professionals agreed. It makes a huge difference, now I'm back to joking with the students, poking the quiet ones, cruising from one side of the room to the other, fielding questions, re-thinking my approach to teaching the basics: person-time. Randomness. Causation.
I've brought the students right along on this journey with me. They've seen me slouching in the chair, exhausted after an hour but still pushing through. But now they see something very much like my old self.

Very much like.
I feel like a counterfactual me. Almost a mirror image, but more of a quantum-entangled actor on the other side, uncannily diverging from what I would have been.


The road stretches out before us.
Let's roll.