Inhaling and exhaling

Yesterday I passed the dreaded pulmonary function testing, which is required for insurance purposes. I did it before my other transplants, but I was worried that the still-resolving pneumonia might make it more difficult. I guess the purpose of the test is to show that your lungs can hold up under transplant, but it’s as much a mental as a physical exercise, which you could fail just by having a panic attack.

A technician puts a clip over your nose and leads you through various tests. For one test, you put your mouth around a tube and breathe in and out and then take a deep breath in and push push push all the air out until you think you might turn blue. For another test, you put your mouth around a piece of equipment that looks like a snorkel and then, with nose clip on, breathe evenly for about two minutes and then do a big inhale and exhale. There was some writing on the bottom of the machine and I repeated each letter to myself to distract myself from the sensation that I was drowning.

I had a funny nurse yesterday who I remembered from my first treatment in 2003. Her name is Mel and she has a deadpan manner that used to crack my mother up. Yesterday we were talking in my room about the fact that I didn’t need platelets. I said I figured I’d probably need them in a day or so.

Mel said that you never know, my donor could still wake up and knock out the bad cells and my counts could come back up.

Then my cell phone rang.

“That could be them calling right now,” she said. (Exit smiling.)

I had shakes and a fever of 102 around 3 a.m. This set me back in terms of possibly going home before the transplant. In another downer, the kids were going to come this weekend but (wisely) canceled due to the storm. Diane and Margaret came, and I was glad to see them.

I thought I would lie down and try to meditate this afternoon, but quickly fell asleep. I woke up when a woman came in to do an EKG; one minute I was all warm under the covers, and the next I was having my shirt pulled up and cold sticky conductors applied to my skin.

The mental game is a work in progress. The high fever, the prolonged hospital stay, the postponed visits (not their fault…I would have worried about their safety if they came) edge me back into doom and gloom and how did this happen territory.

I went over to 6A for a pep talk from Myra. She reminded me that I need to take one thing at a time. The pneumonia is better. Next step, mop up the leukemia and get the transplant. Stay away from the dark side; all it can do is hurt me.

“Give yourself one or two seconds and then give yourself a kick in the butt,” she said.

Right now I'm giving myself a mixture of vanilla ice cream and strawberry jello. A little comfort food never hurt anyone.

Downhill all the way

I am sorry to have neglected the blog. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it.

As I said, I felt sick for most of the weekend, but by Saturday evening I felt a little better. I walked the dog and even made cookies. When I was putting the first batch in the oven, I felt like I was going to faint, and slipped down onto the floor. Joe was out; Katie was uptairs. I wasn’t sure I could make it to the bottom of the stairs, but I did, and she came down and finished making the cookies. Then we ate them and watched “Fred Claus.” I only mention these things because of he incongruity: cookies and “Fred Claus” one night; relapse and hospital the next.

The bag that I had packed on Thursday remained unpacked, so I grabbed it and left uncharacteristically quickly. Joe drove to Diane’s in my new Forester (free ad here: thank you Subaru for such a good car), and then Diane and I went to the hospital.

I’m not sure what the plan is for me. First order of business is finding out why I have a fever (or not finding out and hoping it will just go away.) I am on a ton of antiobiotics and on an antifungal because there is something on my lung, which could be either bacterial or fungal.

I can’t write too much more now because I am lucky enough to just find the keys. It looks like I will get another “mini” transplant, though I couldn’t get any serious chemotherapy because there is so little in my marrow and it wouldn’t recover. I have been in such a fog that I can't remember what Dr. Alyea really said and what I dreamt he said. Hopefully I will be more lucid the next time we speak.

So, three weeks ago I was soaring on high counts. Now this. The mind gets stuck on it, uselessly. You could do it for anything. One minute the car was going slowly. The next minute it is acceleratorating and runs a child over. One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber.

I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon.

I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.