I sat down to write an update almost two weeks ago, but ran into a few obstacles. Overall, the good news outweighs the bad, but it's been a juggling act. I've been on IV medicine twice a day at home for a flare up of a virus called CMV. We all pick up random viruses as we journey through life, many of which lay dormant in our bodies without us even knowing they're there. CMV is one of those viruses. Like mononucleosis, people may never get symptoms. It's passed on by transfusions, breast milk from a CMV+ mother, and being around other CMV+ people. Research shows that at least 80% of the population is CMV+. Somewhere between my treatments last year at Englewood and my treatments at Hackensack, I picked up the CMV virus. My donor is CMV-, so he's in the clear.
Stem cell and bone marrow transplant patients, since we're getting our entire immune system wiped out, are at risk for a flare up of CMV. In these cases, such a flare up can be bad -- very bad. Every week my CMV levels are tested, and on December 28th, the virus showed its ugly self. Aside from the hassle of giving myself IV infusions every day 12 hours apart, the medicine gives me severe headaches and stomach pain that have been getting worse and worse as time goes on. Because it takes time for the medicine to work, my CMV levels went up, way up, before they went down. Then they went up again. This week we switched to a different drug -- a 5 hour infusion once a week at the clinic. I'm feeling a little better, now that I have an arsenal of pain and nausea meds, so let's hope this drug does the trick. I'll need at least three more weeks of treatment before we can close this chapter in my recovery adventure.
About those pain meds. I don't like taking them, but I'm not one of those stoic pain sufferers either. There's good pain, like when you push yourself to get strong or exercise muscles, and there's bad pain, which is just bad pain. I believe that the body doesn't heal as well when there's bad pain, so if there are drugs that can take that away, all the better. The problem is, there can be painful side effects to the pain meds. I don't like how groggy and useless they make me feel, and I really don't like it when they don't work, but usually they do help, so I take them when I really need to.
All this came to a head the day after I released Zofia as my caregiver, of course. I paused to reconsider this decision, but not for long. There was nothing that Zofia could have done for me to make anything better or easier to deal with. I was happy to get my space back and it was a return to normalcy that I was ready for and needed. With my cleaning lady returning, Peapod grocery deliveries from Stop and Shop, and friends willing to run errands if needed, I'm all set. Plus, Zofia left me with meals for weeks, so food preparation is super easy.
Now for the happy news: Sadie's coming home this week! I bought an industrial respirator mask to wear when I clean her litter box, and took it to show my doctor. After giggling at me, he agreed that Sadie can come home from Pittsburgh. Mary and Sadie will arrive on Sunday and more normalcy will be restored.
Another happy thing happened last Monday, when I had the central line taken out of my chest and a PICC line inserted into a vein in my upper arm, as I had last year during treatment. For some reason, PICC lines are not adequate for receiving stem cells. I know how warped it sounds to call this a happy event, but folks, it's a big deal. The line in my chest was causing me trouble and it was impossible to keep dry in the shower. Throwing on a plastic sleeve and taking a long, hot shower, well, it's the little things that make me giddy these days.
I've past the 60 day mark, without any hospital admissions or major complications. I'm extremely lucky. I still marvel at this whole process. The changes my body goes through on this science fiction journey are a constant surprise. I had no idea that treatments for blood cancers are so complicated and sophisticated. My experience has taught me that it's impossible to separate science from luck or luck from faith, attitude and perseverance when trying to make sense of how things turn out. All I know is that I'm grateful for each day of healing.
Kathy
CANcer + HEALth = CAN HEAL
1 week ago
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