The biopsy results trickled in over the course of Thursday.
First result: Only 2% blasts! That sounded really good, since I had been at 20%. We were warned that it might not be all that good, especially if the marrow was essentially empty (hypocellular).
Second result: Less hypocellular than before! Lots of immature cells. Maybe things are moving in the right direction, depending on where those immature cells are headed.
Third result: Almost all of those immature cells carry the deletion-7 abnormality that marks my leukemia. We have lost.
Fourth result: Due to some miscommunication between my local and Chicago doctors, we hang a shred of hope on the belief that the deletion-7 number is premature. But it isn't.
If we hadn't done the biopsy, we wouldn't know it was over and we would be hoping for a highly unlikely five-day break in the fevers at just the right time to get in another (fruitless) cycle of the clinical trial.
Instead, we get to plan my final days, to the extent possible, and think of ways to celebrate my life. Not everyone gets to do that.
Once we figure out the hospice arrangements, I'll leave the hospital and head home. I can keep taking my medications and going in for transfusions, until a fever sets in. If my time in the hospital is any guide, that might not take long. The fever precludes transfusions, and I won't be coming back into the hospital for IV antibiotics to try to get it under control.
My parents are already in town and have been since I re-entered the hospital. My younger brother and his wife had already been planning to visit this week, so they'll be here. My sisters are coming, too. The more family, the better.
We'll do our best to make me comfortable by controlling the fever and taking various narcotics. At some point the infections or a stroke or some other failure will be the end. I am strongly hoping it's in my sleep, without drama or trauma. We've had enough of that.
I have mood swings: acceptance, melancholy, peace, grief, gratitude. They come and go, sometimes within just a few minutes of each other. No anger.
Acceptance is usually highest in the morning, for some reason. Maybe I've been having those pleasant dreams in which I'm healthy, so I'm more open to the it's-all-part-of-life and we-all-get-here-eventually outlook when I first wake up, and less so as the day goes on and I have more time to think about the sadder sides of my current reality.
Sunday, August 26, 2012
Saturday, August 18, 2012
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.
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.
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. |
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.
Thursday, August 16, 2012
Tuesday, August 14, 2012
Out
I was released from the hospital Friday evening, after managing to keep my temperature (just) under 100 for a couple of days.
I still spent most of Sunday at the local hospital getting transfusions, and most of Monday going up to Chicago and back, but at least I got to sleep in my own bed.
In addition to the comfort of being in my own bed, I also got to sleep with the windows open on some really great nights for sleeping: cool, light breeze, crickets and other night chirpers, a gentle rain one night. The hospital can't provide any of that.
I still spent most of Sunday at the local hospital getting transfusions, and most of Monday going up to Chicago and back, but at least I got to sleep in my own bed.
In addition to the comfort of being in my own bed, I also got to sleep with the windows open on some really great nights for sleeping: cool, light breeze, crickets and other night chirpers, a gentle rain one night. The hospital can't provide any of that.
Wednesday, August 8, 2012
Healthy Dreams
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.
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.
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