New stem cells signed, sealed, delivered

I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me. I dozed on and off. We had the TV on ABC’s “20-20,” which was doing a piece on a woman who gave birth to a dwarf (or is it “little person” now). She had other children, but she wanted her small child to have a sibling soul-mate, so she adopted another little person from China, and the two successfully navigated childhood together.

You might wonder why I bring this up; it’s just part of the scene, in an odd way.

The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen.

Concerned that the shaking and shivering and fever would deter my new baby stem cells, I asked the doctor about it, and she said not to worry. Everything calmed down in about half an hour, and, after soaking through two hospital gowns, I finally got a few hours sleep. Today I am a little puffy and bleary-eyed, and I’m starting to feel the beginning of the predicted mouth sores. Somehow, my platelets went up overnight on their own, from about 10 to about 40, so I don’t need any “products” today. I think I will take that as a good omen.

Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

It’s wonderful to have a baby sister who anticipates my every need, who picks me up and who washes, folds and delivers my laundry with a smile.

Thank you everyone for your support – your thoughts, prayers, comments, good vibes, messages, calls, visits and cards really mean a lot to me. The jokes help too.

Oh, about that fruit that I wrote about on the last post. The dietary technician came in and put an end to that. I am happy enough for now with my canned peaches. I don't think I could eat an orange anyway.

Holding pattern is over

I got my first dose of fludarabine, the pre-transplant chemotherapy, on Saturday. I’ll continue getting it once a day until Thursday, when I’ll get a double dose of melphalan, a chemotherapy agent aimed at mopping up what I like to keep reminding myself is a small amount of leukemia. I get my new cells on Friday. Thank you donor, wherever you are.

Dr. Alyea said to expect mouth sores a few days after the melphalan and also a possible thinning of my hair. I still have some fevers (and accompanying shakes) but mostly I feel OK.

It was strange to make the transition from holding pattern to actually taking action. I’ve been here so long (since Dec. 21) that towards the end of the hanging out phase that ended Saturday, I could sometimes distance myself from why I am really here. Once the chemo started, I came face to face again with the worry over whether it will work. The flip side, of course, is thinking that the start of chemo brings me closer to the day when I get the new cells and get better. I’m working on it.

There is no more Zen in my walks. Starting Saturday, I officially became a BMT (bone marrow transplant), with all the restrictions that entails. No more going out the double doors to rapidly walk 30 laps (a mile and a half) around the sixth floor. Whether counting the laps or trying to get in touch with healing energy (sorry if that sounds too new-agey) or just quieting my mind through breathing, I felt that the walks calmed me down. I know, I’m breathing all the time (thankfully) and can still connect with my breath, but it helps to keep moving.

Now (still wearing gloves and a heavy mask), I walk up and down the pod. I couldn’t even begin to count laps per mile, because it’s the shortest pod I’ve been on. Also it’s an obstacle course, with chairs, equipment, janitors’ carts and other hazards making it hard to find a clear path. It always seems to be busy out there, with doctors, nurses and aides going in and out of rooms or congregating to discuss a patient. Still I managed to walk twice today for about 25 minutes each time and even managed to find an area of about six steps to get a little speed up. And it’s all about getting around the obstacles, isn’t it.

Knowing that the dietary restrictions would set in again soon, I had so many big salads last week that a nurse asked me if that was all I ate.

I had company all weekend, which was great. I felt bad when I nodded off during conversation after they came all this way, but I'm sure they understood. Nancy drove from Syracuse; Emily flew from Pittsburgh, and Serena took the train from New York. (Pause here to get stuck twice for blood cultures. Ouch. Poor arms.) Diane also popped in, and Jim brought Katie today after school. Correction: Katie drove Jim. Yikes.

Last night I had an interesting dream. I was in a house where a big bear was rummaging around inside. I tried to run outside but I wasn’t fast enough, because the bear was drawing near. So I plastered myself against a wall and stayed very still. Next thing I knew, the bear had left the house and I was safe.

Oh by the way, for anyone following the MRI story, I got the results back and my brain seems to be OK!