We are on a roll. It's truly a miracle, of which Mike and I are in awe.
Today's blood counts:
white blood count: 2.20
Friends, it has been over three and a half years since I have had counts like this. I almost have to pinch myself to believe it is real. Today the doc told me I can skip two days at clinic, as long as I promise to call them if we notice ANYTHING off. So of course, I promised. Life is good! I am so very lucky and I want to shout thank you from the rooftops to my donor.
My CRNP called this afternoon. My cyclosporine levels are STILL too high, so we're lowering the dose of that again.
Now that I have started engrafting we have to closely watch for Graft vs Host Disease. This normally starts in the skin and/or digestive tract. The first things to watch for are rash and sore mouth. From now through Day 100, GVHD and neutropenic fever are the biggest worries. They say nearly everyone gets GVHD to some degree. And a tiny bit of chronic GVHD would be good because that would keep the MDS from ever coming back. But I don't want acute GVHD.
Because my new 22yo bone marrow is producing cells, I also have to increase my antiviral medications. Most of us have some sort of viruses that live in our bodies all the time. I have CMV (not really sure what that is, but 70% of the people in the southeast have it), the virus that causes chicken pox/shingles, and the herpes virus that causes fever blisters. Once the new bone marrow starts making white cells, the resident viruses can flare up and cause a host of problems. Today they tripled my dose of antiviral meds. As time passes they will give me more antibiotics, too. It's all kind of a balancing act. And I'm making notes so I can keep all my visualisations up to date.
I'm still very weak and tire easily. Mike and I made dinner tonight together and he had to bring a chair into the kitchen for me to sit in every couple of minutes. This is not unexpected by the transplant team, but it's rather disconcerting for me.
I have a morning exercise routine that I got from a yoga teacher in VA Beach. Normally it takes about 15 minutes to complete this routine. I haven't been able to do it in months because I couldn't bend over and risk bleeding in my eyes or brain. Thought today, that this might be a good thing to start to help me get back to normal. Well, I got through it. But it took about 45 minutes because I had to rest between each of the exercises. Whew! I have a way to go. We're supposed to have waves of thunderstorms tonight with a low in the 70s. If it is not raining, I think we will go for a walk early in the morning and see how I can do at that.
Back to dinner. We had Southern Comfort Food: collard greens, peas with chopped fresh tomato and onion, and cornbread. It was so good. I did the cornbread, though Mike had to put it in and get it out of the oven. Cast iron is heavy, you know. LOL. The peas and collards were some I had put in the freezer last year, so they only needed thawing and heating. The tomato is one of the heirlooms Sally brought me that we grew and the onion is one of the little Vidalias I still had left from my last veggie box. Mike got the veggies all done for us, including the chopping. It's nice working together in the kitchen.
Ham and Potato Chowder
11 hours ago