On the road, toting toys

The day before yesterday my doctor said they were going to give me a shot of Neupogen to boost my white count because it had fallen a little, from the 4's into the high 3's. He said it was due to medication and not to worry, but just to make sure everything was fine, they were doing a repeat chimerism to confirm the percentage of donor to me. I haven't heard the results yet.

Quick flash of PTSD. What if something's wrong? Low white count has signaled trouble in the past. But this is now. I know the drill: Recognize the fear and let it go. The thought leaves a cloud, but a cloud won't kill you. My white count went back up the next day.

I have several new toys to get stronger and make life easier. Yesterday physical therapy brought a cane. Who knew I'd be happy to get a cane? It makes me steadier when I walk and especially when I do the stairs. The occupational therapist, whom I welcomed after she stopped quizzing me, brought me hand-strengtheners: a squeezing thingie that looks like a cheese grater, and a tub of green "thera-putty" to mush around in various exercises. Makes me think of the old days when we copied cartoons with silly putty. She also pointed out that my walking would improve if I stretched more (I'm very stiff), so I've been doing runner's stretches, leg extensions in the bed and making attempts to touch my toes. We also talked about yoga breathing, which is always helpful.

Two of my nurses from 6A, Myra and Pam, just came down to wish me well. Myra, giver-of-pep talks, gave me one again, joined by Pam: Don't dwell on the dark days, enjoy the present, don't waste time worrying, think of good things ahead. I mentioned that I was concerned that my platelets were taking so long, and Myra said she's had patients get platelet transfusions for a year. They both gave me hugs, said they missed me and asked me to keep in touch. I thanked them for saving my life and for generally taking such good care of me, emotionally and physically.

Buried lead: Tomorrow I get discharged. I'm going to stay at Diane's in nearby Newton for a while because I will need to come to the clinic every other day to have my tank filled. A physical therapist, home health aide and visiting nurse will come to the house.

Queen of Rashes stays true to form

Yesterday and the day before I was just sitting around minding my own business when I broke out in a mysterious rash. It wasn’t a drug or transfusion reaction because I hadn’t gotten any blood products and I wasn’t on any new antibiotics.

I watched as the hives popped up and then melded together, blossoming into bright red, itchy patches. The Queen of Rashes does it again. I’ve gotten so much Benadryl since then that I have lost track. I continued to get it today, and so far, no rash.

I also got a painful sore in my mouth. It’s not technically a mouth sore, but it’s red and inflamed. Yesterday I went downstairs to the dentist, as part of my pre-transplant workup. While I was there, I asked him to look at the thing in my mouth. He poked and prodded and announced that it would go away. Today it hurt so much that I could barely eat, so I broke down and took some Oxycodone, and then took another dose later. Needless to say, I spent much of today pretty zonked.

The inauguration kept me busy most of the day yesterday. I stayed in bed for a long time and watched the events starting around 9 a.m. I was transfixed. And although I try to avoid cliches, I have to say that much of it sent shivers down my spine. I felt a little decadent staying in bed so long, but then I reminded myself that I am in the hospital and I’m allowed to lie down.

I’ve been trying to do my bed and chair yoga and stretches. During the early part of my “visit,” I felt so sick and disheartened that I couldn’t even think of exercising, except for walking. But as I’ve begun to feel more like myself, the motivation is returning. And after I’m stretched out and have done the poses that I can do without hurting myself, I feel pretty good.

I assume that in a few days I’ll leave the holding pattern and start receiving my pre-transplant conditioning chemotherapy. I think they’re going to give me my own special concoction, but I’m not sure what that will be. I hope I don't lose my hair!

It's almost 10:30 and I was about to get into bed with a book, but I was just called down to MRI for a repeat look at my brain. They do most of the emergencies during the day and the in-patient population at night. My nurse said I was lucky, because sometimes people get called in the wee hours. Oh well, at least I just took my Ativan, and I might even sleep through it.

Spending some uneasy time in limbo

My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels.

I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town.

It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

There is also the possibility that some of my donor cells are going away, but the chimerism evaluating the percentage of donor cells is not back yet. If that happens, there are things that can be done. I am trying not to go there, although, as I have written before, I am spooked by the timing, since I was just about where I am now – six months out – when I lost the graft. I also know the unlikelihood of being hit by the same bus in the same spot. I need to keep believing it.

Over the weekend I was pretty OCD-ish in trying to figure out if my counts might be coming back. I checked and rechecked my black and blue marks and my Petechiae, the pinpoint dots that are a sign of low platelets. Were those new marks or old ones? I looked at a red mark on my gum and wondered if it was blood or if I had food stuck in my teeth. I started to go after it with my toothbrush, but I made myself stop. All I need is to cut my gum and start bleeding.

I am not a professional, but I imagine that this type of checking is a way of trying to feel in control of a situation that is not in our control. Kind of like when you are waiting for an e-mail from that special someone who hasn’t written or called in days. You try to distract yourself, but you can’t stop from clicking on your e-mail. Click, click, click…you could drive yourself crazy.

In times of anxious waiting, I know all the “tricks.” Change your focus. Take care of the things you can control, and give the rest up. Put on comfortable clothes. Do some gentle yoga. Stretch. Read. Take a walk. Breathe. Listen to music. Call someone. Think healing thoughts. Those are just some of the things I do; I'm sure other people have other things.

Still, when your mind works a certain way, it’s hard. It takes practice, and a nudge from self when my mind wanders off. Maybe some of us could form a chapter of ruminators anonymous.