Post from the hospital long-delayed

Sorry I haven’t posted more. When I try to find the keys, either my hands are shaking, my vision and mind are blurry, someone walks in or calls or I make so many typos I quite (there’s one right there: I meant quit) in exasperation. In other words, it’s hard to concentrate. I’m sure anyone who’s been in the hospital can understand. It probably took me more than half an hour to write this paragraph.

So here goes:

Day +5
“You look great. You’re right where you should be!”
These words from Dr. Alyea
put me in a good mood, not necessarily the looking good part, although that helps, but rather the right where you should be part.

It is the opposite of “we don’t know what is happening with you,” a viewpoint I have heard all too often. Unfortunately, part of being where I’m supposed to be is the increase not only in mouth sores but also now soreness down my throat and esophagus. They increased my dose of Oxycodone from 5 to to 10 mg., and the higher dose does seem to keep the pain in check.

I told Dr. Alyea that I didn’t like taking too much pain medication, and he said there is no such thing as too much. “They don’t give you a discount or a credit at the gift shop for taking less,” he said. The important thing, he stressed, is to keep pain minimal. The benefits are wide-ranging and mostly obvious, and I know that it’s especially important to keep drinking and eating. During my first round in 2003, I ended up on IV nutrition for more than a week, and I really hope not to go there again. Of course I might end up on a pain pump and possibly IV and I need to remember that it’s temporary and not a result of my failing to try hard enough.

PJ, a kindred spirit I met through the blogosphere, stopped by after her check-up at Dana-Farber. She looks terrific, and it’s been nice getting to know her through her blog, then phone calls and now in-person.

Ben had a few days off and came to visit that night. As usual, it was great too see him. He stayed at friend’s that night and popped in to say hi Friday morning. He did all the driving, and I got the bonus point.


Day +6
I moved to Room 57. I should say “we,” because Diane did most of the work. The room is a tiny bit bigger, and much brighter. In my old room I got only 25 minutes of sun on a good day. This room is bright most of the day, and I think it’s good for my spirit.

The big news Thursday is that I only had one platelet. This is an abbreviation for 1,000; normal platelet range is 150,000-350,000. Estimates of the normal range slightly. The sound of saying a person has just “one” platelet,” however, is an attention-grabber that leads to fear of bruises and bleeding to death. I was told to take a break from my walks on the pod and to be very careful about bumping into things. I did go out once or twice to get a cup of ice, and the nurses who saw me looked like they thought I was taking my life in my hands.

Day +7
Much of the day consisted of waiting for platelets, which finally arrived at 4 a.m., having been ordered by 9 a.m.. I also needed two units of blood, which I got at around 7 p.m. and 11 p.m. I jotted down a lot of impressions duing the long evening, but couldn't understand them in the day.

Day+8
Dan DeAngelo, my original dotcor, dropped in this morning. I had switched to a transplant docotor (Alyea) when I went the route of the allogenic transplant after the allogenoic, but he is still involved in my care. We talked about my health and his kids and then, of course, his view of how I look.

"You're looking pretty good eight days out!" he said.

Under the weather and grateful for good nurses

Day +3
As expected, I felt a little under the weather yesterday and about the same today. It’s not so bad that I want to curl up in bed, so I’m still walking around. Yesterday I had a headache, nausea and pain from the mouth sores, and Mel gave me the perfect cocktail: Tylenol, Ativan and Oxycodone. Today I will get platelets and blood and some lasix for my puffy eyes and general overall water retention putting me about a dozen pounds over my normal weight.

I don’t like to take too much Oxycodone, because it can make me a little loopy, but I agree with the nurses who think at this point that it’s a good idea, because it’s important to eat and drink but difficult to do so if your throat and mouth are killing you.

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I’ve been thinking about the two nurses I’ve had during this stay whom I first met six years ago during my first round of treatment. As every patient knows, nurses are on the front lines of care, and they are so important to how you feel emotionally and physically. Some take care of you physically but don't have the time or the inclination to talk. These two take the time to find out how you are.

I was one of Vytas’ first transplant patients. We kept in touch on and off, and he’s been my nurse at some point during each hospital stay. He knows me very well, having at one point nicknamed me Nervous Nelle. He can calm me down pretty quickly when I come up with some catastrophic scenario. It’s good to know someone with whom you can share scary thoughts, because once the thoughts hit the light of day, you can often see them for what they are, and some of the power goes out of them. Thoughts such as, “Do you think I’m going to die tonight of (fill in the blank)?”

Vytas knows when to bring me back to reality with a medical explanation and when to make a face or crack a joke. He's generally fun and comforting to be around.

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I met Mel during that same first hospital stay, and I remember that her quirky, dry sense of humor really cracked my mother up. The other day I was pretty down, and she gave me a good pep talk. It didn't sound canned; it sounded like she really meant what she said about second chances and staying positive because there's every reason to be. And she’s caught on pretty quickly to the way my mind works.

She was in the room two days ago when the team came in to discuss one of their ongoing concerns, the fungal, or aspergillus, infection that caused my pneumonia. Although it has improved, they are monitoring the markers carefully and juggling medication to keep it from getting out of control and to hopefully get rid of it.

I said to the doctor who heads the team, “I read that aspergillus can get out of control and kill an immune-suppressed person like me, but that won’t happen because you’re keeping one step ahead of it, right?”

This is not his exact quote, because I wasn’t taking notes: “Theoretically, you could have a problem anywhere the blood flows, so it could spread anywhere, like to the brain. But that’s why we’re watching it so carefully.”

I shot a panicked look at Mel.

“Let it go,” she mouthed.

And after the team left, she said it out loud, firmly. “Let it go.” She knew it was something I might latch on to for hours and hours.

I pointed out that maybe he didn’t need to tell me all of that. “As a writer, I might say to someone that they have too many commas getting them into trouble, but that’s not going to have a big emotional affect on them,” I said. “It’s not the same as the doctor telling you more than you need to know and giving you ideas about bad things that might happen in your brain."

Mel reiterated: Let it go. So I did.

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My friend Katryn, who lives in Portland, came to visit later that day. We’ve known each other since college, and we've done a good job keeping in touch. I saw her last when we met at Plum Island and walked on the beach on a beautiful fall day this past September. I pointed out that I was glad she had come to the hospital but that I would rather be meeting on the beach again, and she said, "Next time." It helps me to think of all the next times.

Katryn had an interesting comment:

“I’m sure you’ll be fine,” she said, “but you’re taking the long way around.”

Which got me humming the Dixie Chicks and talking of other things.