Inquiring minds

All these questions, sheesh. I struggle with this stuff too, but I get to ask the docs. Here is how things have happened:

On day Zero (September 30) I got the transfusion with Lisa's marrow cells. My WBCs were on the decline at that time. I was in the hospital and starting to get sick. The effects of the irradiation and the chemo had started to hit, and the old marrow was dying. WBC went to 0.1 (homeless WBCs hiding under trestles). Mucositis set in, we wrung our hands, but then on day 10 my WBC showed a tiny spark and went to 0.2. Engraftment of the new marrow had taken hold a little, and pumped out a few WBCs.

The WBCs steadily but slowly rose, slowed by the immunosuppressant FK506 so that no GVHD would start. On day 19 my WBCs showed a pretty solid jump from 0.7 to 1.3 and I took that to mean the engraftment was solid and we were out of the woods. However, the mucositis had taken its toll and my mouth and tongue and lips were ravaged. I was on TPN (total parenteral nutrition) through the IV, like a big bag of chicken broth, and that was all my liquid and food until day 20.

My mouth has mostly recovered. The last 2 days in the hospital I drank Ensure and tried to eat, but wasn't ready for solids. You had to take in 3000 ml a day before they'd let you go, but I think they cut me some slack since I was trying. The last of the black lips fell off 3 days ago, but I still have a few lacerations on my tongue and inside my cheeks.

Now, I'm slowly adding solid foods. I had cream of wheat and scrambled eggs for breakfast, with tea, gatorade, then, a tuna and non-dairy cheese sandwich for lunch with a non-dairy milk shake. I'll probably have whatever the SuperCareGiver whips up for dinner (soup?).

We are settling in to this phase. Today was typical of our new routine. We left here at 9:40 this am for my 10am appointment at the Cancer Center. I am mask-free here in the apartment, and in the car if the windows are up, and in the rooms of the Infusion Treatment Area (ITA) in the Cancer Center as it is HEPA filtered. I do have to wear the mask in the waiting room. I sat around and read the paper and got into the ITA at 10:30.

The ITA rooms hold about 6 patients in a common room, separated by curtains. You can have guests. They draw my blood tests and check me out. You sit in a recliner and have your own TV. I read. Once a week I get a chest X-Ray. Once my blood tests come back in an hour or two, they give me whatever they need to (potassium, magnesium, blood), hook my fanny pack IV up with a new load of FK506, give me new batteries, ask me for my list of everything I ate and drank, then away I go. Today was unusual because they reduced my FK506 dose to an amount they can handle with pills, so I was liberated from the fanny pack, no tubes, for now.

I call Dana's cell when I'm finished and she is there in 5 minutes. We left there today at 12:00. I put on my mask and walked out to meet her, got in the car, took off my mask, we make out, and then we went to the grocery store. I have to wear the mask in the store. I have a brand new gut, so I am off coffee for now and maybe for good. Bland diet. I shopped in the baby food aisle today but didn't buy any. We bought puddings, teas, lactose-free dairy, eggs, sorbets and Sprite. My digestive system is like a kid's, and I will coddle it along until my mouth finishes healing.

Today my WBC is 2.9. Normal is 4.0-11.0. The docs are looking for a steady slow rise in WBCs, not like last time. They do not want the WBCs to jump and decide to go attack my liver or anything else, so slow and steady she goes. My total neutrophil count yesterday was 1.84, above the minimum, meaning I am not neutropenic (immune deficient), but the rules are different for BMT patients, so the mask and dietary rules apply regardless.

Here is the latest photo, with another one I took in the depths of hell (10/12), for comparison.