Today was a busy medical day for me, and went longer than I had anticipated.
My parents are in town, not only to lend a helping hand, but they wanted to be here for support though at least a part of my treatment. I’m very glad they came to visit and I’m appreciative of the help and support, but regardless of who they are, more people just makes the day feel longer.
We headed down to the hospital early because I wanted to get my labs knocked out quickly. Only two vials of blood this time, so that was quick and painless. We then ran downstairs to the radiology department for my daily radiation regimen. In addition to the treatment, I also had a few x-rays so they could evaluate the progress of the treatment. The extra minutes on the table left me a little stiff. Stiff, but not in pain. The nurses are dressing up as superheroes for Halloween, but said patient’s costumes are optional. Nice of them.
As much as I like the fact that the radiation has eliminated my pain, I’m feeling frustrated that I still can’t sleep in my bed. I know that’s the least of my problems, but I hate sleeping in the damned recliner. I had to do it after both surgeries (two weeks each time) and I’ve been back in for the last two weeks. And I still feel like I need another two weeks. Getting off the radiation table is awkward and uncomfortable, and that’s only with five to ten minutes lying flat. I can’t imagine lying flat for eight hours and being able to get up and function. Maybe I’m just afraid of the pain now. I don’t want pain, especially at the Ten-level.
But back to the day. After finishing radiation, we headed back upstairs for my second dose of ipilimumab. We went right back to the treatment pods and waited for my pharmacy to send up my cocktail. Which took about thirty minutes. Not a long wait, per se, but I was hoping for quicker. I guess they can’t actually order the drugs until you get up there. It makes sense because if I bailed or had another pain management crisis, the mixed drug would have been a wasted dose. I understand, but I also don’t want to be rational. I feel almost petulant about it, but I need to man up and get on with things. Anyhoo, the drugs came and flowed freely. And I sat in a 12×12 room with my parents for over two hours. By the end of the drip, I felt a little tired, but I chalk that up to the fact that I’m socially (and conversationally) weak and having to chat for two hours is a veritable trial for me.
After I finished my ipilimumab, I sat with my oncologist. She was very pleased by the improvement in my pain. We also spent a good amount of time talking about dosing and side effects and the efficacy of two v. three v. four doses and maintenance doses and scanning frequency. I had to reiterate in my own words what I need to remember about side effects and the need to lose pride for the sake of getting early treatment and more effective results.
It turns out that I’m tracking on the major side effects and I’m ready to make a call, regardless of how I’m feeling. Coincidentally, that’s how I had the non-medical stressors flying about the room. With the impending arrival of Hurricane Sandy, the National Guard all along the Eastern Seaboard are already looking at how to best support whatever the Governor needs to support. I missed a mandatory conference call with the Chief of Staff, so I start in the hole before I can even open my mouth. I dread these State Active Duty call ups because I think we can do better, rather than essentially shutting down “normal” mission accomplishment. I didn’t get yelled at, but I have a funny feeling I’m going to get more hands-on leadership for this storm cycle. I know I have about two or three hours on the computer tomorrow morning to prepare for the next conference call. And I’m mentally tired now.
So far, I’m not showing any side effects, which can be good news. Unless its bad news. Or no news. While its good I’m not feeling crappy, I’d kind of like to know something is working in my body to murder the melanoma cells.
Ah, well, I’m exhausted, but physically and mentally. I need to sleep, but I’m spun up on work and can’t drop off and go to sleep. At least there’s nothing I can do tonight. I need to sleep. Thank goodness I don’t have to go man a shift at the Joint Operations Center tomorrow morning!