Wednesday, June 18, 2008

My cancer story - short version

I keep finding that I need to relate this year-long story in a short version. The full year-long journal is at bottom here. Here's the bulletized version.

  • After a routine shoulder x-ray in January 2007, the doctor said “Get back in here; there’s something in your lung.” Out of nowhere I was found to have Stage IV (metastasized) Grade 4 (most aggressive) kidney cancer, throughout both lungs. Eventually we learned it was also in my thigh, ulna, skull and pelvis. Yet I had no symptoms.

  • Desperately seeking information that could make a difference, I googled my ass off, identified my profile, and what I found was: “outlook is bleak,” “prognosis is grim,” “median survival time 24 weeks.” I scheduled myself into Bernie Siegel’s cancer patient weekend. I joined the ACOR kidney cancer list, started journaling on CaringBridge, and rallied family and friends. We updated my will.

  • The ACOR community (active kidney cancer patients and supporters, always up on the newest information) was my best source of reliable information.

  • I'm a strong believer in the power of how we interpret our experiences. My situation was scary, but I knew the question was "What can I do?" Regardless of the odds, I knew laughter helps health; I considered dropping out of chorus but my doctor said I should not start cancelling life activities I love ("It sends the wrong message, and the oxygen exchange will help you"); and then he said I needed to pack on some pounds to prepare for the battle ahead. So I declared my cancer strategy was to "Laugh, Sing, and Eat Like a Pig." That's what I titled my journal (below).

  • Coincidentally, six weeks after diagnosis I visited WETA-TV in D.C. to talk about PatientSite. That week I got my first symptom: a sore leg, which turned out to be a bone metastasis: a massive met eroding my left femur. The kidney was removed in March (laparoscopically!)

  • HDIL-2 therapy at Beth Israel Deaconess worked for me. I’m lucky; many people don’t qualify for it, and of those who do, only 20% respond. I did.

  • Days before the treatment started, a tumor erupted from my tongue. Gross. I don’t want to think what that would have become if I hadn’t had that early detection. After the first week of treatment that tumor fell off.

  • I continued researching, studying my radiology reports and lab results on PatientSite, and asking questions. Often I was wrong; being empowered didn’t make me an oncologist. Yet my phenomenal oncologist David McDermott and team said “I am happy to field your questions.” Tip: Arrogant doctors are “doctosaurs”; you don't need to put up with that anymore.

  • I gave my PatientSite login to medically knowledgeable relatives, who supported me in knowing what was going on.

  • In early May I fainted in the bathroom one morning and fell on the leg, which broke. Tip: before breaking a leg, you should faint, and wake up already in shock: no pain! Before you're out of shock, EMTs arrive and apply morphine! Pitfall: the ambulance ride to Boston, at rush hour, with powerful thigh muscles bouncing around and no bone to keep them in place. Solution: LaMaze-style breathing.

  • I rented a mobility scooter and bought a Prius (has a big hatchback to hold the disassembled scooter) so I could return to work. (I couldn't rely heavily on crutches because the ulna metastasis threatened to break.) The leg’s now made of steel.

  • In late June we passed the 24 week mark since diagnosis - the "median survival time" that I'd read about. I had a “What’s your drop dead date?” party at work; we blew razzberries at the cancer, and friends around the country did the same, at the same time.

  • My e-community grew astoundingly. Over 100 people have posted comments and support. When an email says “Did you hear, our friend has cancer?” with a link to go see, support can go viral.

  • My second round of HDIL-2, ending July 23 '07, was the last drop of treatment I’ve had. The near-deadly tumors had shrunk 66% before that round; they’ve shrunk another 75% since then, to 8% of their original size, with no more treatment. I am well. Update: make that 5%.

  • I still worked at my day job, on and off during treatment, all summer 2007, returning to work full time in August. My company TimeTrade Appointment Systems was phenomenal; it’s a great place to work. My insurance company, Harvard Pilgrim, was astounding.

  • It took a year after surgery for the leg to return to normal, but it's over. On July 4 I'll be on stage in Nashville with my chorus, competing at the world championships of men's barbershop harmony.
That’s the short version. The full text of my CaringBridge journal, "Laugh, Sing, and Eat Like a Pig" (500 pages), is available here. It's a potent example of Web 2.0 on the hoof.


  1. To hell and back! Singing! Thanks for the summary. ~ Love, Rhonda

  2. > to hell and back

    Or, as we said at the time, "bungee jumping off the cliff of life."


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