Please join me in giving a huge welcome to the one - the only - Jeff! You get to hear straight from him instead of me, for once. I guess you'll be able to test whether I am a reliable narrator or not. This was sent via e-mail before, so I'm sort of cross-posting it here.
I imagine many of you are keeping up with Katina's blog, but I asked her to send this update to all of you so you could hear a bit straight from the horse's mouth. Perhaps some of this will duplicate what you already know. However, given that there was some confusion on our part (and the doctors' parts) through the diagnosis phase about the cancer I have and the accompanying treatment, I wanted to clear the air.
The diagnosis:After the many, many tests and procedures, the final diagnosis is a pretty typical, if advanced, "diffuse large B-cell lymphoma" presenting in my chest, liver, and pelvis. In the final analysis, the doctor was "most impressed" by how bulky my tumors were, but it seems that many of the (apparently) unusual elements of my cancer's presentation were red herrings. I looked like a zebra for a while, but I am a somewhat ordinary horse.
I write this from home in the middle of my the first round (out of a likely 8) of chemotherapy. Each cycle will last about 21 days - a 6 to 7 day hospital stay for constant chemo infusions, followed by about two weeks at home. I also heard yesterday that there may be one last intense burst of prophylactic chemo after the final round. There will be a full-body scan after the fourth round (60-70 days, or 2 to 3 months from now) to see how the chemo is working. At that point the doctor hopes that the cancer will have shrunk enough to be invisible to the scan. The remaining weeks of chemo will then be their attempt to dredge my system clean of every last cancerous cell to prevent relapse. When we get to that point, there will be longer-term check-ups and scans and things to make sure that I'm still cancer-free.
Based on this diagnosis and the results of yesterday's doctors visit, the doctors continue to impress upon me that this is a curable illness. At yesterday's visit, the doctor listened to my lungs and tapped on my liver and suggested that (a) my lungs sounded better and (b) my liver felt/sounded noticeably smaller than when I was in the hospital. Both of these are less precise than the full-body scan I will get after round #4, but they do indicate that my tumors are likely shrinking. My plan was always to win (you root for the home team, no matter what the odds) and this news encourages me that my plan will be realized. Obviously there are no guarantees in life, but this news makes my chosen attitude (irrational optimism) easier to maintain.
How I am doing:
Generally, pretty good, all things considered. I did not experience many obvious side effects during the first actual chemo infusion, although I am feeling tired. But it's hard to say why this is- people report fatigue during chemo treatments. However, I slept restlessly in the hospital, thanks to their pumping me so full of fluids I ran to the bathroom at least once an hour around the clock. I've slept fitfully at home as well, at least in part due to stress. Tiredness or fatigue is also a symptom of troubled sleep.
The biggest side-effect I currently feel is not from chemo at all, but from my three-week hospital stay. I lost 12 to 15 pounds during my time in the hospital and I feel noticeably weaker as a result. So while I no longer get out of breath from climbing a flight of stairs, my legs are so tired by the end that the result is the same: a good sit. I have some serious work to do to build my body back up. I'm taking walks and eating as much as I can, but it's not going to be easy. I still have all my hair and a scrubby beard I grew in the hospital, but am planning a preemptive strike to take care of both.
I have been overwhelmed by all of the supportive emails and calls I've gotten - so overwhelmed I've largely not responded to them. I'm going to try to start digging out on that front soon, but rest assured: I appreciate all your thoughts and best wishes.