My Olympic fortnight has so far been filled with refillings of my tank: sometimes platelets, sometimes red blood cells, sometimes both. Last week, I received transfusions each day from Monday to Friday. That wasn't the plan, but scheduling problems kept turning what would have been a long day of transfusing into two only slightly shorter days. Fortunately for the sake of time, all but the Monday transfusions happened locally instead of in Chicago.
Ideally, I would only need transfusions every other day, and maybe even just three times a week. Ideally, I wouldn't need transfusions at all, but where we set our sights depends on where we are.
On Sunday, another planned long day of transfusions turned into what is now a hospitalization of three days and counting. Toward the end of the session, I started running a fever above the standard threshold of 100.5. That temperature means automatic admission when you are neutropenic and have as few white cells as I do, because an infection can easily get out of control.
After admission, I started getting an additional antibiotic, and we converted another medication that I had started having trouble swallowing from tablet form to intravenous. They also started testing for various infections: lungs, blood, urine. So far, nothing has turned up.
The hospitalization hasn't been bad. I'm at the local hospital, so it's easy for family to visit. Jake and Paul are back from their annual summer family visit to New England, and my parents are also in town, so there's plenty of family. And the nightly interruption schedule is more sleep-friendly than it is in Chicago.
There are usually two criteria for release from the hospital when you have been admitted for a neutropenic fever. The first is to be fever-free for 48 hours. I keep running up over 100 in the evening, so that 48-hour clock keeps resetting. The second is for the neutrophil count to get up to a level that offers some protection. It's been weeks since I had that many, and it will be weeks before I get that many again, if ever. Therefore, we're waiving that criterion, and I only need to meet the fever rule.
When I am not being transfused, and even when I am, I usually feel like sleeping. I wonder how much is the push from being anemic and otherwise quite unwell and how much is the attraction of being asleep. I don't remember most of my dreams, but the ones I do remember feature a me who is healthy. I'm running alone or with friends, on trails or on the track. I'm trying to figure out how to unlock the gas tank on a bizarre foreign car. I'm being shooed out of the kitchen as I forage during meal prep. It's a relief to not be sick, even if only for a few hours at a time.
I'll take those dreams as visions of the future and not just fever dreams.
dreams of the future indeed! Your future I pray :-)
ReplyDeleteYes, dreams of the future!
ReplyDeleteMuch better than those frustration dreams in which you can't get where you want to go or find the person you were trying to catch up with. "He was just here."
Kitchens and cars are much more homey and benign. And hopeful. Be well, Joe.
Joe,
ReplyDeleteIt is so good to hear from you!! I am sure your dreams are of the future. Keep up the fight!!
Alex
Ah...the vision of you that we all remember and hope to see soon. May you have access to lots of Olympics on the Carle channels, during your waking hours. Maybe your body can take a hint from the predicted weather---and cool down. We are all thinking of you and trying to send healing (now cooling) wishes.
ReplyDeleteAnn, Brian & Paul Dampier
I always think of you as healthy and running! Dreaming of soon reading a blog entry that no transfusions are necessary because the trial medication worked for you and remission has begun. Oh, and stay cool so you can go home.
ReplyDeleteSarah
Thinking of you, Jan, and the entire family. Sending thoughts and prayers for strength and more - and more than - healthy dreams. Heather and Marshall Ulrich
ReplyDelete