Now I Can Talk About It

Still in the hospital. The fever that landed me back in the hospital has been under control for the day. So that's good.

But we're also dealing with several varieties of bad.

For this hospitalization, I have been designated a fall risk. I don't know how they determined that, but I don't blame them for being cautious on my behalf. As a fall risk, I have a bed alarm that would go off if I got out of bed to use the bathroom without assistance, or tried to make a break for it. I also wear yellow socks and a yellow "FALL RISK" wristband, in case I disable the alarm and make a break for it. When Jan is here, they turn the alarm off so that she can get in bed with me. Usually, she sits at the foot of the bed so she can look at me. Sometimes, she curls up there and takes a nap.

No day can be all bad when I have this
gorgeous woman on my bed.

I have trouble keeping food down. I'm taking Marinol to enhance my appetite and Zofran to manage nausea, but the vomiting comes on so unexpectedly and without any preceding nausea, that we can't time the Zofran to be reliably ahead of it. Besides being unpleasant, regularly throwing up interferes with my nutrition, which further weakens me.

Medically, the worst of the bads has to do with my vulnerability to infection. I was scheduled to start cycle 2 of the trial this coming Monday, but it's too soon to stop the intravenous drugs that are addressing the undiagnosed infection(s) behind the recent fever. So maybe the week after, if no fevers return. And the fevers have to stay away during the week of treatment. And with my immune system in its current state, that's a shaky proposition.

More bads, psychologically, are the unknown length of the treatment and the low odds of success. My previous treatments, no matter how unpleasant the side effects, always had relatively short durations (maybe a couple of weeks) and the confidence of my medical team. It's a lot easier to tolerate distress when you can count the days. This treatment could take months to show signs of success, and more often than not, it doesn't.

All of the above has caused us to step up the pace of learning about palliative care, which is what you do to remain as comfortable as possible once you decide to stop treating whatever is killing you. Which, unfortunately, is a decision we may have to make soon, especially if I can't shake the fevers or if some other complication shows up, like one of those killer fungi I had each of the previous rounds of treatment — there won't be any emergency surgeries this time. I am having a bone marrow biopsy early next week to try to gather additional information. It won't make the decision about continuing or discontinuing treatment easier, but it may make it clearer.

In the meantime, my plan is to stay in the hospital receiving IV antibiotics for as many days as possible, with a discharge right before my next chance at starting cycle 2. It's not all bad. Jan spends a lot of time here. We reminisce, we cry, we just hang out without saying anything. Best part of my day.