Aug 19, 2009
Immunotherapy is one of 3 forms of chemotherapy. Treatment is hard and the recovery period from treatment is just as hard, only shorter. Weird things pop up after stopping the drugs. I had headaches (never on TX), more hair loss, allergy issues leading to skin issues, peripheral neuropathy (heels hurt), joint pain (one knee screamed), insomnia and verbosity. They pop up, they go back away. Hair loss stopped after 7-8 wks. Hardest may actually be that family believes I am 'well'. I'm not well. I am likely virus free but I am recovering from chemo. 6 months semi-bedridden is not something that gets fixed when you stop taking immunotherapy drugs. The smartest thing I've done is to stop self-obsessing (not easy at all) and get off my *** and do something about getting 'well'.
Post Chemo Recovery Camps
4 WEEKS POST - I went to Central America after my 4 wk. followup visit. My hgb was good, but neuts and platelets were still far, far below normal range. Glad I did not know at the time. I walked, I swam, I climbed rolling hills. I ate fruit till it was coming out of my ears. I was too exhausted to body surf and fighting undertow was too much work, too. I looked crazy to other bathers when I scrubbed off layers and layers of tough dead skin with handfuls of wet sand. The water bottle, tylenol, eye drops and chapstick went everywhere with me. Too tired to cook but ate tons of fish and drank papaya en leche at all the local hangouts. Had a wonderful birthday at a boutique hotel. I don't look quite right in the photos but I looked very happy. I finally felt like some semblance of 'normal' after a very long time of being very sick.
10 WEEKS POST - An 8 wk. CBC showed hgb even higher, neuts back well into normal range but platelets still a pitiful 111,000. Doing arm weights every day but too hot to go outside to walk. I'm facing return to work and I was feeling so homesick for the Rockies that I could cry. Just wanted to sleep on my own land, drink from my well and look at the Milky Way. Drove 12 hours in the truck with a mattress in the back, a pack full of dried food and 5 gallons of water. Every day was a forced march. Hike for several hours straight uphill, resting again and again and watching everyone pass me. I'm sure not the Energizer bunny I used to be. Every muscle hurt, all the way up to the glutes. Eat lunch and spend an hour or 2 climbing back down, carefully placing every step. Can't fall down because I don't want to be one big bruise and don't want to explain the low platelets in an emergency room. Even passed on the trail on the way down by old people, while I rested my aching knee. Why do they have to put all those log steps in the trail anyway? Climbed every day and ate dinner looking down at the lights on the plains and watching shooting stars. Nights were cold and clear. I slept like a child. On the 12 hour ride back, I was much steadier and much less stiff when I climbed out of the truck for gas. I know I've re-established my balance and may have enough strength and stamina to go back to work now. Continuing the arm weights and taking the dog on long walks every day, early in the morning, should keep me on track. I don't want to go back to work, just don't have a good enough reason not to.
12 week followup visit on Monday. Know I'll be UD, hoping hard for just the minimum level of normal platelets. Life is good.