In case anyone was wondering, being home is far better than being in the hospital.
It took most of a week, but my sleep has returned to normal. The food in the hospital was pretty good, but the food at home is better. My appetite has not returned to normal, but I usually get in three meals a day.
I still don't have much energy or muscle strength. I added a few 30-second jogs to one of my morning walks a few days ago. Exhausting. My hemoglobin levels are still low, but not low enough to require transfusion, thankfully.
I have a large unexplained bruise on my arm, and my legs are covered with petechiae, which look like red freckles but are actually tiny superficial hemorrhages caused by low platelet counts. But not low enough to require transfusion, thankfully.
The critical blood count, the absolute neutrophil count, continues to tease me. I left the hospital at 50. It was 50 again on Monday. It was back 0 on Thursday, which means I have no internal protection against infection. I test again this Monday. Can't get worse!
My doctor in Chicago reminds me to be patient, because it still might take another couple of weeks to see the neutrophils come back. I can be patient. I used to coach seven-year-olds in soccer.
Sunday, September 25, 2011
Sunday, September 18, 2011
Still Stuck, But Home
The original thinking, upon entering the hospital with a neutropenic fever two weeks ago, was that we would wait for the neutrophil count to get back to normal (1500), which the local doctors thought might take a week, and then I would go home.
As the first week went on with no real movement in the neutrophil count, the threshold for going home dropped to 1000, and then 500. And the counts kept wiggling along between 0 and 30.
For training, I was back to walking the corridors with my IV pole or riding the exercise bike they brought to my room. At first I was partial to the bike, because I could work harder, but the highest setting of the seat was still a little too low for me, making it uncomfortable.
Into the second week with no real movement in the counts, the expectations and the plan changed again. The plan became to finish my two-week course of intravenous antibiotics and go home as long as I felt fine, no matter what the neutrophil count. With the double burden of recent chemotherapy and an infection, it could take a long time for the neutrophils to come back even to 500, and I might as well do that recovery at home.
So I came home yesterday, with a neutrophil count of 50, and I'm back to the extra precautions in force when I was discharged after the transplant: check my temperature regularly, avoid people. My legs felt pretty dead this morning, despite all my walking and biking during my incarceration. I think it's just not the same. Also, I'm pretty low on hemoglobin.
But I'm home!
As the first week went on with no real movement in the neutrophil count, the threshold for going home dropped to 1000, and then 500. And the counts kept wiggling along between 0 and 30.
For training, I was back to walking the corridors with my IV pole or riding the exercise bike they brought to my room. At first I was partial to the bike, because I could work harder, but the highest setting of the seat was still a little too low for me, making it uncomfortable.
Into the second week with no real movement in the counts, the expectations and the plan changed again. The plan became to finish my two-week course of intravenous antibiotics and go home as long as I felt fine, no matter what the neutrophil count. With the double burden of recent chemotherapy and an infection, it could take a long time for the neutrophils to come back even to 500, and I might as well do that recovery at home.
So I came home yesterday, with a neutrophil count of 50, and I'm back to the extra precautions in force when I was discharged after the transplant: check my temperature regularly, avoid people. My legs felt pretty dead this morning, despite all my walking and biking during my incarceration. I think it's just not the same. Also, I'm pretty low on hemoglobin.
But I'm home!
Sunday, September 11, 2011
Stuck
When I was admitted a week ago with a neutropenic fever, the expectation was that my blood counts would recover over the course of the week and I would go home.
The most important number is the absolute neutrophil count (ANC). The low end of normal is 1600, 1000 is pretty good, and even 500 is often enough for doctors to release you to a safe environment. But below 500, you have to be in the hospital, because infections can get out of control very quickly. That's why I'm in a room with an airlock and positive air pressure (to keep airborne microbes out) and specially filtered water.
Here are my numbers:
9/3: 20 OK, this is what chemo does
9/4: 0 nowhere to go but up!
9/5: 20 here we go... once they start climbing, they usually climb exponentially
9/6: 10 um...
9/7: 0 huh...
9/8: 10 yeah, yeah... we'll see what happens tomorrow
9/9: 30 this looks promising
9/10: 20 oh, come on!
9/11: 10 good grief
According to the doctor making the rounds this weekend, about 20% of patients take longer than a week to start recovering. It looks like I'm one of those.
I seem to be creating new red blood cells, so my stem cells are doing something. They may be creating neutrophils, too, but something else might be destroying them.
I feel fine. My appetite and energy are normal. I'm just stuck here in the hospital until my neutrophils come back.
The most important number is the absolute neutrophil count (ANC). The low end of normal is 1600, 1000 is pretty good, and even 500 is often enough for doctors to release you to a safe environment. But below 500, you have to be in the hospital, because infections can get out of control very quickly. That's why I'm in a room with an airlock and positive air pressure (to keep airborne microbes out) and specially filtered water.
Here are my numbers:
9/3: 20 OK, this is what chemo does
9/4: 0 nowhere to go but up!
9/5: 20 here we go... once they start climbing, they usually climb exponentially
9/6: 10 um...
9/7: 0 huh...
9/8: 10 yeah, yeah... we'll see what happens tomorrow
9/9: 30 this looks promising
9/10: 20 oh, come on!
9/11: 10 good grief
According to the doctor making the rounds this weekend, about 20% of patients take longer than a week to start recovering. It looks like I'm one of those.
I seem to be creating new red blood cells, so my stem cells are doing something. They may be creating neutrophils, too, but something else might be destroying them.
I feel fine. My appetite and energy are normal. I'm just stuck here in the hospital until my neutrophils come back.
Sunday, September 4, 2011
Neutropenic Fever
Saturday morning, I woke up feeling a little listless and a little achy. Jan and I headed out for our morning walk. I had been hoping to jog, and I thought that the blood transfusion I received on Friday would make the jog faster than my previous one, when I was left in the dust by a walker. But after twenty minutes of easy walking, I was ready to stop.
I took my temperature when we got home: 100.6. Half an hour later: 101.8. I called my doctor, and we discussed whether I should go to the local hospital or make the two-and-half-hour drive to Chicago. We decided to stay local, both for convenience and to avoid the risk of getting seriously ill somewhere between Kankakee and Peotone.
Until yesterday, I have never been in an empty emergency room. I guess Saturday morning isn't a popular time to have an emergency, at least compared to Saturday night. So I got right in, had some blood drawn and x-rays taken, took Tylenol to bring down the fever (102.8), started an intravenous antibiotic drip, and got admitted to the hospital.
Neutropenic fever is a common occurrence after chemotherapy. The chemo drops all the blood counts, which is why I received platelets and blood late last week. But that still leaves the white cells wherever they have dropped to, which means chemo patients are especially vulnerable to infection. Of the white cells, the neutrophil cells are the most measure of infection resistance.
My neutrophil count reached zero today, and it was nearly zero yesterday. People with low (or no) neutrophil counts are neutropenic, and neutropenic patients often have high and unexplained neutropenic fevers.
That describes my case. The labs here have checked my blood, urine, and lungs without finding any infection. I slept most of Saturday and Saturday night, and today I feel pretty good. I have a low-grade fever instead of the sheet-soaking heat of yesterday.
I will stay in the hospital until my neutrophil count reaches 1000. That will probably be about a week.
While I'm not happy about being back in a hospital, I'm very happy with the care. I have a large room, the staff are very good, the food is good (really), and they brought me an exercise bike.
I took my temperature when we got home: 100.6. Half an hour later: 101.8. I called my doctor, and we discussed whether I should go to the local hospital or make the two-and-half-hour drive to Chicago. We decided to stay local, both for convenience and to avoid the risk of getting seriously ill somewhere between Kankakee and Peotone.
Until yesterday, I have never been in an empty emergency room. I guess Saturday morning isn't a popular time to have an emergency, at least compared to Saturday night. So I got right in, had some blood drawn and x-rays taken, took Tylenol to bring down the fever (102.8), started an intravenous antibiotic drip, and got admitted to the hospital.
Neutropenic fever is a common occurrence after chemotherapy. The chemo drops all the blood counts, which is why I received platelets and blood late last week. But that still leaves the white cells wherever they have dropped to, which means chemo patients are especially vulnerable to infection. Of the white cells, the neutrophil cells are the most measure of infection resistance.
My neutrophil count reached zero today, and it was nearly zero yesterday. People with low (or no) neutrophil counts are neutropenic, and neutropenic patients often have high and unexplained neutropenic fevers.
That describes my case. The labs here have checked my blood, urine, and lungs without finding any infection. I slept most of Saturday and Saturday night, and today I feel pretty good. I have a low-grade fever instead of the sheet-soaking heat of yesterday.
I will stay in the hospital until my neutrophil count reaches 1000. That will probably be about a week.
While I'm not happy about being back in a hospital, I'm very happy with the care. I have a large room, the staff are very good, the food is good (really), and they brought me an exercise bike.
The Joy of Sets
This post is about interval training, in which you run sets of something (200m, 2min) with a specific rest interval between each effort. So, it really should be called The Joy of Intervals, but where's the pun in that?
Recovering from my stem cell transplant has forced me to break my jogging into small pieces. To keep it interesting, I come up with different patterns:
Recovering from my stem cell transplant has forced me to break my jogging into small pieces. To keep it interesting, I come up with different patterns:
- repeats (e.g., 12 x 2)
- ladders (e.g., [1 2 3 4] x 3
- pyramids (e.g., [2 4 6 4 2] x 2)
While I wish I could jog longer without rest, I am happy to reacquaint myself with interval training. I had forgotten how much I like it! It was a staple of my training as a college 800m runner, and for a few years after that as a competitive road racer.
But I have been a recreational runner for a long time, and just about all of my running for many, many years has had the following pattern:
- run some distance at some pace
The run might 3 miles or 14, fast or slow, but it was almost always just a run.
One thing I like about intervals is that it adds variety to the run. I need to avoid sunlight, so I stick to a route that is well shaded in the early morning. But it's pretty boring traveling the same route every day, even if I sometimes get to travel it with Jan. Having an interval pattern to follow shifts my focus from the route to how I'm feeling during the tiny jog and rest pieces.
Another reason I like interval training is the way it breaks up the run into bite-sized chunks. Even in my current state, I can jog for a minute, or sometimes even for six minutes.
I am surprised at how similar my current interval training feels like my training 30 years ago, given the difference in speed.
How slow am I going? During my last interval session (12x2), there was a man about my age and build out for a walk, a few dozen yards ahead of me. I was jogging for two minutes and walking for one, and the man ahead of me kept increasing his lead. Sure, you can take me now. Just wait until I get some red blood cells.
Aside from training at one-third the speed of 30 years ago, the effort and psychology feel familiar. My heart rate is getting up around 160 at the end of a jog, and down to 130-140 by the time I start the next jog. And I enjoy passing milestones: halfway done, only 3 to go, this is the last hard one... There are a lot of little victories along the way.
When I progress to being able to really run, I need to remember to stick with the intervals.
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