Jan 04, 2012 - 7:03 pm
Hi, I'm Donald Boothby, aka Raleighdon. I am 61 years old, an endurance cyclist (average over 10,000 miles per year) and love old Raleigh bikes, hence the name. I was diagosed with EC (Stage IV) on August 11th. Survived two 5-day inpatient chemo stays 3 weeks apart commencing on 8/29 (very fast I'm told to be able to get diagnosed and start treatment) and that was coupled with 25 radiation treatments. On October 26th I entered Swedish Hospital for an esophagectom and stomach pull up, with a head/neck surgeon also brought in to sweep the lymph nodes out of the right side of my neck. What started out as a 10-15 day stay turned into a 52-day hospitalization from Hell as I developed chyle leaks that took three surgeries to get stopped, in addition to another surgery where we attempted to install a Denver Shunt (that failed, too). The last surgery was on Dec. 5 and I was discharged on the 16th. I managed to maintain my weight through chemo/radiation, but am now less than 135# (started out at 151#) and my legs are like spaghetti. I have been doing a little bit on the bike, 10 minutes a day in the basement, and 2 very short very flat rides outside over the weekend when the weather was nice and Mimi (wife of 33 years) was with me to make sure I had help if something went badly. It didn't. I'm slowly gaining strength back, though I still have only about half of my voice (my job requires talking on the phone a lot during the day), I can't deal with any stress (gee - insurance claims aren't stressful are they?) and am just starting to feel like my head is starting to clear.
I've read back through some of the discussion threads here, and am not real encouraged by a lot of what I read, but then, I know our survival rate isn't very good, so I'm not surprised. The main difficulties I'm having right now are 1) my appetite and ability to get enough calories into me, and 2) sleeping.
I think our nutrition plan is starting to work as I'm down to 12-hour feeding cycle which allows me to actually get hungry. The sleeping part, though, is a real pain. I saw a recent discussion about elevated beds. We're looking at what to do and how to do this without Mimi having to sleep at an angle or me sliding off the wedge and then end up flat and at risk of aspiration. Looking for some ideas about how others sleep, what the elevation solutions are that you've tried and how well each work. I've got a soft wedge pillow and built myself a sort of nest with several other pillows. Can't sleep on my side, but can roll about half of the side without any problem.
Any feedback will be appreciated.