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.
To hell and back! Singing! Thanks for the summary. ~ Love, Rhonda
ReplyDelete> to hell and back
ReplyDeleteOr, as we said at the time, "bungee jumping off the cliff of life."