This was my first update after my 30-day induction therapy. I posted it on Facebook, but I don't think all the readers of this blog are on my Facebook page, so I wanted to have this here as well.
It's kind of like I'm on hiatus right now and am airing old episodes, isn't it?
Today I finally turned on my computer and phone. I know, I know, typical. I'm still playing the cancer card though so...
So I have been at home for a few days, and while it is great to be here, it a little frustrating to realize that I am still pretty sick. The effects of the chemo, and maybe moreso, the effects of being in a bed for a month (hardly even holding up my head), make day to day things pretty challenging. More mentally that physically, probably. I am incredibly weak and tired. BUT I am getting a little stronger each day I think, and am generally off most of my pain meds except occasional Tylenol. My doctor appt. on Tuesday confirmed that my blood counts have come up a lot, practically normal in a couple of cases, so that is good. But it also means I'm ready for more chemo! So, back to the hospital on Tuesday for a 5-6 day stay and 3 days of chemo infusion. Because its a less intense regimen, I should be able to go home right after. Then 28 days later we do it again, and so on for a max of 4 cycles. If I find a matched bone marrow donor during these cycles, that will be done right away in lieu of completing the 4 cycles. If not, after the 4 cycles, we just wait and hope for the best (no relapse) until a donor is found. If no donor is found, there are couple of other options for transplant (cord blood, less matched donors, etc.). These are less effective and/or more risky, so they'll have to weigh that decision out with my risk of relapse. Which I'm told might be intermediate to high. But there is a lot of uncertainty in predicting these things. By the way, THANK YOU to everyone that has signed up to be a marrow donor. I hope there are a few matches amongst you guys for someone in need, even if it isn't me. If you're thinking you still want to do something but the marrow donation isn't quite it, perhaps still consider donating blood or platelets. I received probably 5 transfusions of both from as many people during my hospital stay and I try to remember to be grateful to them every day.
In other news, I am enjoying my bald head, although it gets quite cold. How do you dudes manage that? Do you just get used to it? I have a funky wig courtesy of Jen Hunter that is pretty fun, and a growing collection of scarves. Luna could care less about my lack of hair. She points and says, "No hair. Fix it later." She also pointed out the hole in my collar bone from my central line and informed me that I have an owie, and: "Luna fix it. Luna help. Later." So, I'm still waiting on that :). Brett is back at work, occasionally, which makes me happy for him. He is juggling and taking care of so much that my head reels to think about it. Same with my sister Jo, who is here helping with Luna while she also works on her teaching credential, and my mom who spent her spring break here...and my aunts... I don't even know how to thank these crazy people. And the rest of you with your notes and gifts and time and help...seriously, who ARE you people? You are too much.
So, a small and incredibly modified yoga practice here and there, a lovely massage from a lovely friend, and visits from friends and family willing to watch me slump on the couch and complain :P while Luna brings them an endless procession of books ("Read this.") are making me feel a little more light every day. As well as reading through the stacks of books and magazines and DVDs I was gifted with. Particularly the first season of True Blood.
Is there something wrong with me that I love watching a TV series that centers around vampires and talks constantly of blood when I have a serious blood disease? Quite possibly there is, but if you know me, you knew that already.
love to all, jq
