On my 10 year cancerversary, medical assistance for migrants

msfmigrants

From the Doctors Without Borders report (see below)

Update: I’m delighted and gratified that we met the donation goal described below. Thank you.

It snuck up on me again, the anniversary of my cancer experience, which came and went, more or less, in 2008, ten years ago. Last year I wrote about the experience a little:

There is a reasonable chance I’d still be alive today if we had never biopsied the swollen lymph node in my thigh, but that’s hard to say, too. Median survival from diagnosis is supposed to be 10 years, but I had a good case (a rare stage I), and with all the great new treatments coming online the confidence in that estimate is fuzzy. Anyway, since the cancer was never identified anywhere else in my body, the treatment was just removing the lymph node and a little radiation (18 visits to the radiation place, a couple of tattoos for aiming the beams, all in the summer with no work days off). We have no way (with current technology) to tell if I still “have” it or whether it will come “back,” so I can’t yet say technology saved my life from this one (though if I’m lucky enough to die from something else — and only then — feel free to call me a cancer “survivor”).

It turns out that all this life saving also bequeaths a profound uncertainty, which leaves one with an uneasy feeling and a craving for antianxiety medication. I guess you have to learn to love the uncertainty, or die trying.

Unlike the anxiety I have now, the fear and sadness I felt that summer were almost overwhelming. Today, 10 years later, with no detectable disease (not that I’m looking), I am thinking of the millions of people who have no access to the kind of medical care I had, who face similar or worse medical conditions in infinitely worse social conditions.

With so much energy in the US being diverted to our political crisis, for good reason, I want to pause for some humanitarian assistance abroad. Doctors Without Borders is a great organization doing vital work around the world. This year I am honoring their efforts to provide medical assistance to migrants fleeing violence and instability in Central America (here’s a report on the conditions there, and their work.).

I will match contributions to Doctors Without Borders up to $1000 for this campaign (plus the $80 or so GoFundMe will charge to collect it). It’s a small token of appreciation for my good fortune.

Here’s the GoFundMe link: Emergency Global Healthcare. I’ll make my contribution directly to Doctors Without Borders after it reaches $1000 or stops growing. Thank you for considering it.

And below is what I wrote on the five-year anniversary.

CportraitofP

That summer, when she was four, my daughter made this picture of me.


My 5-year cancerversary

I didn’t even register it right away. Five years ago this Memorial Day I got my diagnosis of follicular lymphoma, a form of non-Hodgkin’s lymphoma. It was late on the Friday afternoon when the surgeon called with the biopsy results. He never said the word “cancer,” but recommended I see an oncologist. He was a very nice guy, and told me I was going to live to be an old man. Within 15 minutes I had read that follicular lymphoma is usually incurable. (The UpToDate database I used now puts it this way: “most cases of follicular lymphoma are not curable with currently available therapies.”) It was a long long weekend.

Usually follicular lymphoma – a blood cancer – is advanced before it’s first discovered. In the next few weeks, one oncologist told me the median survival was between 10 and 20 years. I was 40 with a wife and 4-year-old daughter. I asked her why she was an oncologist. She said she was interested in end-of-life issues. Also, the nicest people get cancer.

Eventually we determined that I had what apparently was a rare case of Stage I, which may be curable. I had 18 days of painless radiation and didn’t (physically) miss a day of work. Lucky is a funny word for this.

Five years later I don’t have an oncologist anymore. It’s the first line on my medical chart but not a to-do list item. When we moved away, my Bayesian-minded oncologist wrote in his farewell note, using his best handwriting: “Your chance for cure is reasonable: pre-test probability is low. Early detection is not helpful. If you get an enlarged lymph node, get biopsied.” Maybe that’s oncology speak for: “Relax, good luck!”

pretest-probability-is-low

Anyway, there were lots of people I never told, including the chair of my department and some good friends and colleagues. Maybe that’s because it went from incurable (yikes, too much information) to possibly-cured (so stop complaining already) so quickly – before the start of the new semester – so I didn’t know how to bring it up or what to say.

For most people with this disease, the story is different. Thankfully, we’ve had a revolution in lymphoma treatment, and it’s usually a very long story. Most people live many years, and I’m told the new treatments usually aren’t that bad. (Easy for me to say.) Chance of surviving (that is, dying from something else) is pretty good. Experts debate whether the word “cure” should be used more.

Meanwhile, now there are two kinds of people in the world: people with a better prognosis, and people with a worse prognosis. Of course that’s always been true. But this experience sometimes makes me dwell on that, which increases my tendency to draw a sharp resentment/sympathy line according to this criterion. That isn’t healthy because it obscures the more important bases upon which to relentlessly judge people and compare myself to them.

seesawline

I’m writing this because I remembered how lonely and scared I felt back then – when I didn’t even know where on the scale to put myself. Nothing aggravates the modern identity like incalculable risk. Fortunately, I had the greatest family and friend support – and medical care – anyone could ask for. Life got back to normal. We adopted another daughter. There are other risks to worry about.

But I’m thinking that somewhere someone with no idea what to do next is getting news like I did and Googling “follicular lymphoma.” If that’s someone you know, or it is you, maybe it will help to know about one more person who’s still living about as normal a life as I was before. Feel free to drop me a note.

2 Comments

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2 responses to “On my 10 year cancerversary, medical assistance for migrants

  1. Thank you for the awareness and matching here, Philip.

    Thank you, also, for sharing this part of your journey. It’s the first time I’ve heard it. I wonder if you’ve ever done any (perhaps casual) research on the short and long-term effects of a rather positive outcome from a health scare like this one. Through a strange turn of events, I’m a member of an advisory council for patients and their families at UCLA and we discussed PICS (post-intensive care syndrome) at our meeting this week. It got me thinking about the sociology and social psychology of it–although I haven’t made any move forward it delving into it.

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    • Thank you. After my heart scare (lol?) I read a little about how people who’ve had heart arrhythmias fixed get anxiety about heart stuff (not surprising), but nothing on the general case. The modernity / insecurity literature refers to trust issues having to do with dependence on technology, etc, but haven’t seen research on it either. Good idea!

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