We are getting really heavy rain since sometime yesterday, this after a bunch of days of temperatures over 100 degrees, record setting stuff. Its been rough being in Texas through all that, I hope its not going to be that way every summer! All of the gardening and stuff we did in the yard pretty much died, there are a few plants that have survived. The roomies are still with us, they think they will know something in October — they are trying to get jobs at the council office in Atlanta — but of course Greg and I are still fine with the arrangement, we just sympathize, we know they miss their families and aren’t loving being apart from them just for a paycheck.
In the past month, health-wise, I have been doing OK. The light chains results are hovering around 12,000 – 14,000 and we haven’t been able (or willing) to bombard me with much else. We did try Doxil one week, its a red kool-aid looking drip that took over an hour but it tore up my blood pretty bad. I have had to get platelets every week and sometimes blood. He is staying in top of the Aranesp and Neupogen shots too. My last cycle I received Velcade 3 times, the Doxil once, and he held off on the Cytoxan because my counts were too low.
I’ve been in a rotten place emotionally, starting with a fight with my little sister over something that hurt me. She never apologized or anything, I just had to get over it, and I did finally call her on Monday just to gab and she was fine, nothing was mentioned about what had happened. At night I have been struggling with tormented dreams/ nightmares that are often just memories or playbacks of actual events that occurred in my life. I have a lot of regrets and they haunt me at night. I am trying to wean myself off the sleeping pills (Ambiem) as I suspect they are aggravating the problem.
I do feel ready to go, like things are in order and this isn’t getting better and I would welcome the end. I don’t mean that in a depressing or giving-up sort of way, more, just being practical, I see where I am with things. It is a constant struggle to get my blood up to par and since there has been minimal chemo taking place, it has to be cancer activity dragging me down. Dr. A. knows we have the 8-day cruise (we leave the 11th) and after that I think he is planning to do another bone marrow aspiration, come up with a plan.
We have been discussing moving into an other stem cell transplant, but I sort of feel like I wouldn’t qualify, my blood is too beat up right now. Perhaps things will pick up after the vacation. I had platelets, Aranesp and Neupogen on Tuesday and am going back on Friday for platelets plus they have pre-ordered blood. The goal is to have me in the best shape possible for the cruise. I will still have to do dialysis, but that’s not such a big deal, as long as the delivery of supplies and all that goes smoothly. The Tuesday after we get back I know he is going to come at me with Velcade and Doxil, possibly even the Cytoxan if I can handle it, and of course steroids. I skipped taking them but then he talked me into taking 1/2 the dose the final week I was on Velcade. I just really hate where they put me in mood, spirit, and bloatiness!! Life on steroids is NOT worth it.
Things are going OK with Greg’s job, possibly even looking up, he is being pulled into a lot more responsibility and feeling more worthwhile to his department. Its good to have the Jamboree behind us, that was a lot of stress and distraction from his national office duties, leading him to feel he was being left behind in his department, but now it seems to be getting on track. He will be traveling at least 50%, whole weeks at a time, switching off with the other guy with his role. We’ll deal with it as it comes, so far I still drive myself to the clinic on my own and spend my days at home doing dialysis, working on projects, trying to stay healthy.
We’ve managed to enjoy a few things around Texas, with friends, getting out and about. I love going to the Dallas Farmer’s Market even though its easily a 45-minute drive. I have run across several good BBQ places and brought home ribs and pulled pork, as I do manage to eat some every now and then. We went out to a steakhouse with a bunch of the displaced BSA folk a few weeks ago, the service and food was terrible but we had a good time visiting with everyone. Last weekend we spent Saturday with the roomies at the Bedford BBQ & Blues Fest and had a good time. We spread a blanket out and set up camping chairs and just hung out listening to the music, people watching, and eating bad fair-type food like corn dogs and funnel cake.
I turned 47 last week, on the 2nd of September, and got a LOT of well wishes on my Facebook wall as well as a few cards in the mail. The roommates got me a Texas-themed welcome mat for the back patio and a rustic Texas star for inside our privacy fence. So, overall, as long as I can keep my appointments at the clinic and keep my blood in check, I am doing OK. Its still difficult to get around and I get dizzy if I stand too much or move around too much.