Christmas Letter 2009
Christmas Letter 2009
Dear Friends,
It is my custom at this time of year to celebrate with my friends by giving them the gift of self — to share some of what the last year has brought me.
If you remember the old Chinese curse, “May you live in interesting times,” I thought last year was interesting. But this year has been a real test, almost beyond any I’ve faced in a life full of challenges. In fact, considering all the events of the last ten years, I’ve decided to write off the entire naughts and move into the next decade with the hope of turning things around and building a new life for myself.
While writing the first draft of this letter, I found it so depressing that I had to sit down and rewrite it completely. I could go through a long list of all the horrific things that happened to me in the last 12 months — but this is supposed to be a Christmas letter. I’d rather look at the year in that light. (If you’d like the gory details, I’ve published a lot of them on Facebook, or you can contact me.)
Yes, medically speaking, the last 12 months have been a nightmare. My cancer is still growing. I’m suffering from Paraneoplastic Syndrome — an autoimmune problem caused by the presence of cancer. It gives me extreme fatigue, brain fog, and paralysis, but I’m not going to let these things define who I am. They are events happening to me. They are not me.
In many ways, I’m proud of how I’ve handled myself during this time of extreme challenge. I’ve met every challenge head-on and done my best to overcome it. I started working at 6:00 a.m. so I could take an hour-and-a-half lunch and nap each day to fight the fatigue. When they told me it was no longer safe for me to live alone, I set up systems that made it possible — refusing to surrender my independence. I used Facebook as a tool for independence. I even invented my own homemade medic-alert system rather than paying for one with a monthly fee I couldn’t afford.
When they told me I had “advanced brain cancer,” I almost laughed. I knew I wasn’t that lucky — that would be something they could understand and treat. What’s happening to me, even House couldn’t figure out.
I’ve moved forward with the treatments even though they terrify me. Three spinal taps in three weeks is no fun, but I did it. An IV every four weeks is not something I would choose, but I show up. I’ve now taken 550 mCi of radioactive iodine — making it much more likely I’ll get leukemia someday — just so I can keep my life today. (1000 is the lifetime maximum.) Blood work, PET, CT, MRI — these have all become normal parts of my life.
I’ve had to become my own greatest advocate, pushing my doctors when they would have stayed put. I made them consider Hashimoto’s Encephalopathy — a type of Paraneoplastic Syndrome with only about 1000 recorded cases — and now they’re treating me for it. I pushed to stay on monthly IV steroids instead of daily pills with all their side effects. I’m even trying to convince them to give me a mammogram since last December’s scan showed cancer in the breast, and now that breast hurts. Yes, there is a good chance next year I’ll have a mastectomy. (I think they call it something different for men, but it’s the same surgery.)
Other than that, Mrs. Lincoln — how was the play?
I like to think my medical problems haven’t defined me, but in many ways they have changed my life. I don’t know how much of my old life I’ll ever get back. It’s hard to think about the year without relating it to what happened medically. Last Christmas I did get a white Christmas — over a foot of snow in my driveway — but I was so sick from radiation and lack of thyroid that I spent the day crying instead of enjoying it. In the spring I worked hard to get back in shape. My weight had gone up 40 pounds during treatment, but it was slowly coming down. One Saturday I walked six miles and swam one. The next Saturday I needed a cane.
In June, I visited
Alaska. I saw that beautiful land from the sea, watched bald eagles flying, saw
whales bubble-feeding and breaching. Seven days at sea — and while I enjoyed
it, it was hard. I was the slowest person on the boat, taking a nap every afternoon
and going to bed early with a mind that felt sluggish and not quite working.
Even my day-to-day life is affected. I seldom have the energy to journal or work on my writing. Most days, work is all I can manage, and the weekend is for recovery. I’ve even put dating aside — I worry that anyone who wants to date someone with stage 3 cancer might not be entirely right in the head.
But the naughts are almost over — and good riddance to them. Hopefully the second decade of the 21st century will be far better for me, and I hope it will be a good one for you as well.
Thank you all for
your support, friendship, prayers, and for simply being you — my friends.
And as Tiny Tim
said: “God bless us, everyone!”
Love,
Odell
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