Leukemia is a cancer affecting the white blood cells, also called leukocytes. In a person with leukemia, new leukocytes fail to mature properly. Immature leukocytes are called lymphoblasts, or "blasts" for short. Instead of maturing and assuming their role defending us against infection, the leukemic blasts remain immature and keep multiplying.
Eventually, the oversupply of blasts interferes with the production of normal red blood cells (carry oxygen), platelets (stop bleeding), and/or neutrophils (a specific type of white blood cell that fight bacteria). It was a drop in neutrophils that sounded the first alarm in my case, the presence of a few blasts in my blood that caused the doctors to move more quickly than they originally planned, and the high percentage of blasts in my marrow that confirmed the diagnosis of acute myeloid leukemia.
The bone marrow biopsy that I had last Wednesday was to see, on a preliminary basis, whether the chemotherapy had the desired effect. First, we want to see that most of the cells in the marrow have been killed. Second, we want the percentage of blasts in the remaining cells to be quite low. Some of remaining blasts might be leukemic cells still dying, or healthy blasts just being born -- I don't think you ever have no blasts.
And the results are in -- It's just a preliminary reading, but they're as good as they can be.
Or, to put it another way, they're as good as they can be!
We'll be checking again after my marrow has had a chance to recover, but for now there's no reason to think I'm not on the right track.
Monday, January 31, 2011
Sunday, January 30, 2011
Bad Hair Day
I often have what what many would call Bad Hair Days. In the interest of not being judgmental, I claim my hair isn't actually bad on these days, just misguided. Your hair might be similarly misbehaved if it went to bed wet.
Anyway, my hair has been having an increasingly hard time lately. Chemotherapy attacks rapidly dividing cells. The target is cancerous cells, but the collateral damage is bone marrow cells, cells lining the digestive tract (frequently leading to diarrhea), cells growing your nails (making them brittle and rough), and cells growing your hair (causing your hair to fall out).
I had been seeing signs the last few days that I was about to earn my Hair Loss badge: seeing more hairs on my pillow upon waking; whiskers coming off in my hand; hair balls the size of a small rodent on the shower drain...
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| When my pillow looked like this, I knew it was time. |
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| You can't quit, Harry McHair. You're fired! |
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| I now have even less hair than my dad! (Thanks for the trim, Dad!) |
As you can see, I still have facial hair. However, my eyebrow has already thinned to the point that it looks like I have two eyebrows. Anyway, I think this look works for me.
I'm also losing hair on my arms, chest, legs, and ... elsewhere. (Sorry, no pictures.) Soon enough, it's all going to be gone. Naked as a mole rat.
I'm also losing hair on my arms, chest, legs, and ... elsewhere. (Sorry, no pictures.) Soon enough, it's all going to be gone. Naked as a mole rat.
I think it's the loss of eyebrows that really gives cancer patients the cancer patient look. Fortunately, my family's got me covered.
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I Thought That Was a Good Thing
During my first day, undergoing a lot of tests, technicians and nurses kept taking my pulse. Almost every time, they would ask, "Is your heart rate normally that low?" Yes, when I'm lying in bed, breathing slowly, my pulse is usually in the low 50s. Sometimes, it's even in the high 40s. I'm a runner.
This morning, a tech wheeled in an EKG machine, hooked up leads to chest, shoulder, arms, and legs, took a reading, and left. A little later the nurse came in and said there was some concern about my heart rate. During the 4:00 a.m. vitals check, my heart rate had been 48, and at 8:00 it was 49. She said they might move me to a different unit, one with telemetry, which means I would be hooked up permanently to a heart rate monitor.
"Does the unit have a treadmill?"
(Chuckle) "They don't use a treadmill on that unit."
That got my heart rate up. Here I had been proud of and encouraged by my low heart rates, and now there was a chance that having a low heart rate would cost me the ability to run.
Fortunately, the doctors are interpreting my low overnight heart rate as a return to a post-chemo normal, so it doesn't look like I'll have to move.
This morning, a tech wheeled in an EKG machine, hooked up leads to chest, shoulder, arms, and legs, took a reading, and left. A little later the nurse came in and said there was some concern about my heart rate. During the 4:00 a.m. vitals check, my heart rate had been 48, and at 8:00 it was 49. She said they might move me to a different unit, one with telemetry, which means I would be hooked up permanently to a heart rate monitor.
"Does the unit have a treadmill?"
(Chuckle) "They don't use a treadmill on that unit."
That got my heart rate up. Here I had been proud of and encouraged by my low heart rates, and now there was a chance that having a low heart rate would cost me the ability to run.
Fortunately, the doctors are interpreting my low overnight heart rate as a return to a post-chemo normal, so it doesn't look like I'll have to move.
Saturday, January 29, 2011
Tested (part 3)
The midday vitals check on Wednesday showed the fever returning. I was feeling kind of draggy and hoping the two bags of blood scheduled for the afternoon would perk me up. Took a little a nap.
Around 3, I start coughing. I have coughed off and on since arriving at the hospital. The air is extremely dry, and I have had a little bit post-nasal drip, so the back of my throat is occasionally tickled or irritated. The doctors always ask if the cough brings anything up, and it (so far) hasn't. Some coughing is actually good for the lungs, helping to keep the air passages open and defending against lung infections. It's also good to take extremely deep breaths, for the same reason.
(Warning: NSFM [Not Safe For Mealtime])
This round of coughing is different, triggered from deeper down the throat. Next thing I know, I have figuratively tossed my literal cookies. But just the cookies. On the floor between the bed and the bathroom. I page the nurse to report my achievement. Since the chemo started, the doctors have been asking about nausea and vomiting, and I have had nothing to share. Now, I may have finally earned my Vomit merit badge. It wasn't very impressive, but it should count.
The nurse eventually comes in, cleans up the floor, offers me an anti-nausea medication (although I am not nauseous) that will make me (even more) groggy. I accept. More napping.
At the afternoon vitals check, my fever is up to 39 (102.2 F). (Surely high enough to earn the Fever merit badge.) We do another round of blood and urine samples, to re-run the pre-dawn tests.
At 6, more deep coughing. Chicken and cheese enchiladas!
At bedtime, the fever is up to 39.9 (103.8 F). Normally, high fevers are accompanied by aching muscles, but not this one. I'm guessing it's because I am not in condition to mount the kind of inflammatory response that causes the aching. More Tylenol, and the nurse packs me in cold and ice packs -- one under each thigh, one in each armpit, an ice pack behind my neck. They feel great. It occurs to me that there is a commercial opportunity in a pillow that you could set to a desired temperature.
By midnight, the fever is down, and it has yet to return. None of the tests turned up any infections, and it's not unusual for chemo patients to have unexplained fevers.
And so ended a very busy day. Lots of tests, a couple of merit badges. It's been mercifully quiet since then.
Around 3, I start coughing. I have coughed off and on since arriving at the hospital. The air is extremely dry, and I have had a little bit post-nasal drip, so the back of my throat is occasionally tickled or irritated. The doctors always ask if the cough brings anything up, and it (so far) hasn't. Some coughing is actually good for the lungs, helping to keep the air passages open and defending against lung infections. It's also good to take extremely deep breaths, for the same reason.
(Warning: NSFM [Not Safe For Mealtime])
This round of coughing is different, triggered from deeper down the throat. Next thing I know, I have figuratively tossed my literal cookies. But just the cookies. On the floor between the bed and the bathroom. I page the nurse to report my achievement. Since the chemo started, the doctors have been asking about nausea and vomiting, and I have had nothing to share. Now, I may have finally earned my Vomit merit badge. It wasn't very impressive, but it should count.
The nurse eventually comes in, cleans up the floor, offers me an anti-nausea medication (although I am not nauseous) that will make me (even more) groggy. I accept. More napping.
At the afternoon vitals check, my fever is up to 39 (102.2 F). (Surely high enough to earn the Fever merit badge.) We do another round of blood and urine samples, to re-run the pre-dawn tests.
At 6, more deep coughing. Chicken and cheese enchiladas!
At bedtime, the fever is up to 39.9 (103.8 F). Normally, high fevers are accompanied by aching muscles, but not this one. I'm guessing it's because I am not in condition to mount the kind of inflammatory response that causes the aching. More Tylenol, and the nurse packs me in cold and ice packs -- one under each thigh, one in each armpit, an ice pack behind my neck. They feel great. It occurs to me that there is a commercial opportunity in a pillow that you could set to a desired temperature.
By midnight, the fever is down, and it has yet to return. None of the tests turned up any infections, and it's not unusual for chemo patients to have unexplained fevers.
And so ended a very busy day. Lots of tests, a couple of merit badges. It's been mercifully quiet since then.
Friday, January 28, 2011
Tested (part 2)
[First -- Friday was a fine. A little low on energy, but otherwise feeling fine. No fever since Wednesday, decent appetite, a good bike ride. Platelet and red blood transfusions, plus continued antibiotics.]
Wednesday morning -- fever diminished, and pretty uneventful.
Except for the bone marrow biopsy. Roughly 12 days after the start of chemo, they check the contents of the bone marrow to see what effect the chemo has had. I lie face down on my bed, tastefully flashing the doctor. A shot of local anesthetic, and then the doctor works a very thin and strong needle into my hip bone. It's a lot of work for the doctor, and mostly just a numbed pressure for me.
(When I had the biopsy earlier in the month that led to my diagnosis, the doctor -- a different one than this episode -- had to lower the bed so he could put more of his weight into it, and he ended up bending the first needle. Runner's bones are hard.)
Eventually the doctor works the needle through the bone's cortex and into the marrow. The marrow isn't numb, so I can tell the doctor she's there. She sucks out a bit of liquid from the marrow. It's a short, sharp pain that passes quickly.
Step two is essentially a core sample of the bone and marrow, working the same spot, but with a fatter needle allowing them to remove a thin plug of bone and marrow. Again, lots of work by the doctor, mostly numbed pressure for me, except right at the end when they get to the good part.
Then they bandage me up, tell me to keep pressure on it by lying or sitting in bed for an hour -- which I assure them I can manage.
I order a new (for me) item off the menu -- chicken and cheese enchilada -- and I decide to give the chocolate chip cookie a try, since I think my sweet aversion might be fading.
(to be continued)
Wednesday morning -- fever diminished, and pretty uneventful.
Except for the bone marrow biopsy. Roughly 12 days after the start of chemo, they check the contents of the bone marrow to see what effect the chemo has had. I lie face down on my bed, tastefully flashing the doctor. A shot of local anesthetic, and then the doctor works a very thin and strong needle into my hip bone. It's a lot of work for the doctor, and mostly just a numbed pressure for me.
(When I had the biopsy earlier in the month that led to my diagnosis, the doctor -- a different one than this episode -- had to lower the bed so he could put more of his weight into it, and he ended up bending the first needle. Runner's bones are hard.)
Eventually the doctor works the needle through the bone's cortex and into the marrow. The marrow isn't numb, so I can tell the doctor she's there. She sucks out a bit of liquid from the marrow. It's a short, sharp pain that passes quickly.
Step two is essentially a core sample of the bone and marrow, working the same spot, but with a fatter needle allowing them to remove a thin plug of bone and marrow. Again, lots of work by the doctor, mostly numbed pressure for me, except right at the end when they get to the good part.
Then they bandage me up, tell me to keep pressure on it by lying or sitting in bed for an hour -- which I assure them I can manage.
I order a new (for me) item off the menu -- chicken and cheese enchilada -- and I decide to give the chocolate chip cookie a try, since I think my sweet aversion might be fading.
(to be continued)
Thursday, January 27, 2011
Tested (or, A Medically Eventful Day)
I missed a day of blogging. I was kind of busy. First busy with tests, but then mostly busy feeling like crap. All typical and expected stuff, according to the doctors and nurses. Feeling much better today, so I expect to fill in the exciting details as time allows.
Update 1:
Yesterday was so packed, I have to start at midnight. The NSA (Nursing Student Aide) records my first noteworthy temperature (38.3 C, 100.9 F). A few hours earlier, the nurse had shared a story about a patient of hers who was happily up walking and two hours later needed help breathing, due to a galloping infection. Sweet dreams! And I have been told that once a fever reaches 38 C, we start to address it.
Me: That's kind of high.
NSA: Yes.
Me: Are we going to do anything about it?
NSA: I'll tell the nurse.
Me: (To myself -- were you going to tell the nurse if I didn't ask you to?)
I wait... wait... close my eyes... wait...
1:15, I wake up to pee. I'm pretty sure the nurse hasn't been in. I wonder which of the following is true:
Update 1:
Yesterday was so packed, I have to start at midnight. The NSA (Nursing Student Aide) records my first noteworthy temperature (38.3 C, 100.9 F). A few hours earlier, the nurse had shared a story about a patient of hers who was happily up walking and two hours later needed help breathing, due to a galloping infection. Sweet dreams! And I have been told that once a fever reaches 38 C, we start to address it.
Me: That's kind of high.
NSA: Yes.
Me: Are we going to do anything about it?
NSA: I'll tell the nurse.
Me: (To myself -- were you going to tell the nurse if I didn't ask you to?)
I wait... wait... close my eyes... wait...
1:15, I wake up to pee. I'm pretty sure the nurse hasn't been in. I wonder which of the following is true:
- The NSA forgot to tell the nurse.
- The NSA told the nurse, and the nurse didn't think it was important.
- The NSA told the nurse, the nurse thought it was important, and she just hasn't gotten around to my room yet. Did I mention that there are a lot of sick people here in the hospital?
I page the nursing station. "Can I help you?" "Yes, I'm wondering if my nurse was told about my fever and if she's going to come in." "I'll tell the nurse."
More waiting... 15 minutes... still wondering about the three possibilities above, because I have no idea what is going on outside my room. My dad (staying with me this week) heads out to the nursing station to see what's going on, and returns to report that the nurse is gathering supplies and will be coming in soon.
When the nurse arrives, the eventful day begins in earnest. Blood draws, to test for blood infections. Urine sample, to test for a urinary infection. We start several intravenous antibiotics, just in case there is a bacterial infection behind the fever. (Yes, this means Ivy and I were not as "done" as I thought. Instead, we were "done" in the manner of Jersey Shore's relationship authorities Ronnie and Sammi.) Tylenol.
Maybe a little sleep. Then, chest x-ray, without leaving my bed -- a mechanical dinosaur partially enters my room, cranes its neck over the foot of my bed, cocks its head to look at my chest, and bzzzzt.
Maybe a little more sleep. Vitals. The usual early morning tablets. Fever falling.
Breakfast time, feeling reasonable, but anticipating a need for a nap, both because of the disrupted sleep and because my hemoglobin count is below 8. I'll be getting blood later in the day, so I plan to work out after that.
But it didn't work out as planned.
Tuesday, January 25, 2011
A Medically Uneventful Day
Slept (relatively) well, feeling a little draggy due to low hemoglobin counts, had a good breakfast and lunch, did some work... Today's workout will be a low-key affair.
The morning medical posse stopped by to say everything looks good.
Jan had a great meeting this morning with an Urbana woman whose husband was treated for the same condition at this same hospital. That's going to be a good relationship to have.
My dad is arriving this afternoon and staying for the rest of the week. Also expecting a visit from a member of the U-C Quaker meeting.
Uneventful is good!
The morning medical posse stopped by to say everything looks good.
Jan had a great meeting this morning with an Urbana woman whose husband was treated for the same condition at this same hospital. That's going to be a good relationship to have.
My dad is arriving this afternoon and staying for the rest of the week. Also expecting a visit from a member of the U-C Quaker meeting.
Uneventful is good!
Monday, January 24, 2011
The Good Ship Lollipop
Last night was a largely typical night: Somnus Interruptus.
- Turn in around 10.
- Vitals check around midnight.
- Visit to the bathroom around 2.
- Visit again around 4.
- Vitals check a little later.
- Blood draw around 5.
- Morning pills around 6. Take advantage of being up for another bathroom visit.
- Vitals check around 8. I guess I might as well get up now.
For some reason, when I got back into bed after the 4 a.m. pit stop, I had the song "The Good Ship Lollipop" going through my head.
On the good ship Lollipop
It's a sweet trip to the candy shop
I was puzzled.
Where bon-bons play
On the sunny beach of Peppermint Bay.
Where in the world did this song come from?
See the sugar bowl do the Tootsie Roll
With the big bad devil's food cake.
I mentioned that it was a largely typical night. One thing that was different was a little abdominal pain.
And if you eat too much, oh, oh
You'll awake with a tummy ache!
Huh! My belly hurts, and somehow my mind dredges up a song with the words "tummy ache" in it? That's just weird. Does anyone have any better tummy ache songs to suggest?
Anyway, my tummy ache is gone now.
= = =
Uneventful day. Platelets down to 4, so I got another platelet transfusion. Now up to 21. Currently watching Despicable Me, courtesy of the recreational therapist.
Brother-in-law coming in for a visit this evening.
Sunday, January 23, 2011
I Have It Easy
A lot of people have praised me for my positive attitude. It's a little embarrassing, because I don't think it's that praiseworthy.
Yes, I have a very serious medical condition, and I'm confined to a single short corridor on the sixth floor of a hospital a few hours away from home for at least a few more weeks, with an expected return stay that's even longer. Compared to where I was two weeks ago, this is a lot worse.
But compared to what some of my fellow patients are going through, my experience so far has been pretty sweet. As I write this, my neighbor to the west is repeatedly vomiting. (Note to self: Put on some loud music when lunch arrives.) I rarely see other patients, because most of them don't have the energy to get out of bed. Those who do get out onto the corridor are barely moving. One of the few patients I have seen on the exercise equipment looks like the skinnier of the two comic relief ghost pirates from the Pirates of the Caribbean moves -- gaunt, sunken eyes, blotchy skin. I (so far) haven't had any negative side effects from my chemotherapy -- appetite is fine, energy level is good.
And that's just the physical side. Financially, I have a strong health insurance policy, and a supportive employer with short- and long-term disability benefits and a willingness to let me telecommute as I am able, and savings to draw on if needed, and family to turn to if that's not enough. I'm sure there are others up here who, besides feeling physically terrible, are also tormented by financial worries.
Outside of the hospital, Jan has it rougher than I do. I have room service and people who clean my room and provide me with clean hospital gowns whenever I need them. Jan has her regular job(s), and she has to take on my share of the shopping, cooking, dishes, laundry, and day-to-day parenting that I would do if I were there. Plus, she worries about me.
It's easy to be positive when you aren't being tested.
Yes, I have a very serious medical condition, and I'm confined to a single short corridor on the sixth floor of a hospital a few hours away from home for at least a few more weeks, with an expected return stay that's even longer. Compared to where I was two weeks ago, this is a lot worse.
But compared to what some of my fellow patients are going through, my experience so far has been pretty sweet. As I write this, my neighbor to the west is repeatedly vomiting. (Note to self: Put on some loud music when lunch arrives.) I rarely see other patients, because most of them don't have the energy to get out of bed. Those who do get out onto the corridor are barely moving. One of the few patients I have seen on the exercise equipment looks like the skinnier of the two comic relief ghost pirates from the Pirates of the Caribbean moves -- gaunt, sunken eyes, blotchy skin. I (so far) haven't had any negative side effects from my chemotherapy -- appetite is fine, energy level is good.
And that's just the physical side. Financially, I have a strong health insurance policy, and a supportive employer with short- and long-term disability benefits and a willingness to let me telecommute as I am able, and savings to draw on if needed, and family to turn to if that's not enough. I'm sure there are others up here who, besides feeling physically terrible, are also tormented by financial worries.
Outside of the hospital, Jan has it rougher than I do. I have room service and people who clean my room and provide me with clean hospital gowns whenever I need them. Jan has her regular job(s), and she has to take on my share of the shopping, cooking, dishes, laundry, and day-to-day parenting that I would do if I were there. Plus, she worries about me.
It's easy to be positive when you aren't being tested.
Saturday, January 22, 2011
Blood Doping Works
Yesterday, a 15:00/mile pace pushed my heart rate to 160.
Today, a 13:20/mile pace kept my heart rate at or below 140.
The difference? A couple of bags of blood.
Today, a 13:20/mile pace kept my heart rate at or below 140.
The difference? A couple of bags of blood.
New Room
The night chemo ended (Thursday) was also my last night in my initial room. When I was admitted, there were no free beds on the "leukemia" wing, so I started in a room on the "solid tumors" wing.
The nurse brought a wheelchair -- shudder -- and I loaded it with my small collection of stuff: backpack, books, pajamas, running shoes, some V8 juice (my way around the lack of any juices that aren't too sweet for my [current] tastes)...
I had been told that the rooms in the NW wing were larger, since they were doubles converted to singles. I was misinformed. My new room may be a converted double, but if so, it was converted by turning it into two singles and an anteroom. So, it's actually smaller. On the plus side, it does have an old wall-mounted HP computer, so that's something to look forward to in case my MacBook dies.
The anteroom is part of the enhanced sterility controls in this wing relative to the one I started on. Filtered air is constantly pumped into my room, and both my door and the anteroom door to the corridor remain closed. Whenever either door is opened, air flows out.
My windows face north, so I'll miss the direct sunlight my first room had. But the view is better: more sky, a variety of buildings, the main entrance to the medical center (always bustling), playground (empty -- kids these days are such wimps about 10-degree temperatures).
I'm currently finishing my second platelet transfusion, with some red blood cells to follow. I can tell I'm running low on the latter. Yesterday, I was running/walking at 15:00/mile pace on the treadmill, thinking I was taking it sufficiently easy. Then I checked my pulse -- 160, which is too high for taking it easy. So I kept dialing down the speed until my pulse reached a more reasonable 140. Total workout: 31:28 for two miles. After my upcoming blood-doping session, who knows what I'll be capable of.
Update: Now receiving the red blood. It's going to be a few hours (two bags). The nurse asks how I'm doing, and I mention that I'm kind of sleepy. "Oh, that's the Benadryl. It makes you kind of mellow." Uh oh. I'm clinically mellow to begin with, so it looks like we'll be turning the mellow dial up to 11.
The nurse brought a wheelchair -- shudder -- and I loaded it with my small collection of stuff: backpack, books, pajamas, running shoes, some V8 juice (my way around the lack of any juices that aren't too sweet for my [current] tastes)...
I had been told that the rooms in the NW wing were larger, since they were doubles converted to singles. I was misinformed. My new room may be a converted double, but if so, it was converted by turning it into two singles and an anteroom. So, it's actually smaller. On the plus side, it does have an old wall-mounted HP computer, so that's something to look forward to in case my MacBook dies.
The anteroom is part of the enhanced sterility controls in this wing relative to the one I started on. Filtered air is constantly pumped into my room, and both my door and the anteroom door to the corridor remain closed. Whenever either door is opened, air flows out.
My windows face north, so I'll miss the direct sunlight my first room had. But the view is better: more sky, a variety of buildings, the main entrance to the medical center (always bustling), playground (empty -- kids these days are such wimps about 10-degree temperatures).
I'm currently finishing my second platelet transfusion, with some red blood cells to follow. I can tell I'm running low on the latter. Yesterday, I was running/walking at 15:00/mile pace on the treadmill, thinking I was taking it sufficiently easy. Then I checked my pulse -- 160, which is too high for taking it easy. So I kept dialing down the speed until my pulse reached a more reasonable 140. Total workout: 31:28 for two miles. After my upcoming blood-doping session, who knows what I'll be capable of.
Update: Now receiving the red blood. It's going to be a few hours (two bags). The nurse asks how I'm doing, and I mention that I'm kind of sleepy. "Oh, that's the Benadryl. It makes you kind of mellow." Uh oh. I'm clinically mellow to begin with, so it looks like we'll be turning the mellow dial up to 11.
Friday, January 21, 2011
Ivy and I are Done
Yesterday, at 9 pm, we officially broke up.
I will still hook up from time to time, for transfusions and possibly some medications, but for the most part I am a free man.
I had gotten fairly good at walking with the pole through the corridors and through doors, even developing a move I call the Seeley Spin to get over this one bit of carpet edging. Somehow, I never mastered the trip to the toilet and back to bed. I would get up, drag the pole five steps into the bathroom while avoiding the pole's power cord on the floor, do whatever needed doing, maneuver back to bed, and find that I had wrapped my IV line once (and occasionally twice) around the pole. Then, I would have to walk once (and occasionally twice) around the pole before I could get back into bed.
I felt like a feeble-minded dog who can't go five steps without wrapping his leash around his master.
I will still hook up from time to time, for transfusions and possibly some medications, but for the most part I am a free man.
I had gotten fairly good at walking with the pole through the corridors and through doors, even developing a move I call the Seeley Spin to get over this one bit of carpet edging. Somehow, I never mastered the trip to the toilet and back to bed. I would get up, drag the pole five steps into the bathroom while avoiding the pole's power cord on the floor, do whatever needed doing, maneuver back to bed, and find that I had wrapped my IV line once (and occasionally twice) around the pole. Then, I would have to walk once (and occasionally twice) around the pole before I could get back into bed.
I felt like a feeble-minded dog who can't go five steps without wrapping his leash around his master.
Thursday, January 20, 2011
New Blood
I am, right now, receiving my first transfusion. Platelets, the blood cells that stop the bleeding. When they're low, you bruise easily and bleed more. Mine are at 10 (thousand), and we don't want them to get any lower.
Before I receive them, I need to hear about the risks from a doctor: fevers, chills, rigors (shakes); 1 in 2 million chance of HIV; 1 in 1.6 million chance of Hepatitis C; 1 in 150,000 chance of Hepatitis B. I'm signing anyway.
The platelets come in a clear plastic IV bag. It looks like the result of blending 2 T butterscotch pudding with 2 cups water. Takes about 10 minutes, and I'm good to go.
Off to run! No pudding for dessert tonight.
Before I receive them, I need to hear about the risks from a doctor: fevers, chills, rigors (shakes); 1 in 2 million chance of HIV; 1 in 1.6 million chance of Hepatitis C; 1 in 150,000 chance of Hepatitis B. I'm signing anyway.
The platelets come in a clear plastic IV bag. It looks like the result of blending 2 T butterscotch pudding with 2 cups water. Takes about 10 minutes, and I'm good to go.
Off to run! No pudding for dessert tonight.
Exciting New Weight Loss Miracle They Don't Want You To Know About!
I'm in a very good mood today, for no particular reason. Sunlight (finally) might be part of the reason. I had a (relatively) good night of sleep, which always helps. Yesterday's (mildly) sore throat has faded, which had me worried that I might be coming down with an infection.
This morning, I took another lengthy walk through the maze of corridors -- still haven't found the cheese! I've become a regular sight in some of the far reaches of the sixth floor, and a few of the researchers and doctors and other staff greet me with some variation of "doing laps again, I see." One person offered a caution -- stay out of a particular dead-end corridor, because they do animal research there, and who knows what diseases might be in the air. Helpful tip!
One of the advantages of being in Chicago (as opposed to, say, St. Louis) is that I have relatives here. I have already been visited by three cousins, on two separate evenings. Sam had the misfortune of being here while a second-year medical student practiced his history-taking technique, so Sam got to hear more than he wanted to about bowel movements, urination, and so, so much more. I'm hoping I can provide better entertainment to future cousin visits.
My medical question of the day is, why am I losing weight? Unfortunately, I missed my chance to ask the attending physician, because I was out walking when he and his posse stopped by. It is common to lose weight during or shortly after chemo, for various reasons: nausea, loss of appetite, vomiting, diarrhea. However, I have none of those symptoms. I have a couple of theories: At my in-hospital high weight, I was receiving the maximum amount of IV fluid, and I was constipated. (Feel free to make predictable "full of shit" jokes in the comments.) I figure that was good for a few pounds. When I asked the head nurse, she didn't sign on to my theories but gave two more possible explanations.
First, I'm probably eating less than I think, and less than I normally do. I don't have ready access to snacks, or to seconds, since I have to order everything and it takes about 45 minutes for it to arrive. So, there's no immediate second helping of jambalaya (I wish) or spur-of-the-moment cookie binge. This delay seems like it could be (or already is) part of a successful weight loss strategy.
Second, chemo can rev up the metabolism. (At least, I think that's what she said.) So, combined with not eating as much as usual, I could be running a calorie deficit. Please -- Don't try this at home!
This morning, I took another lengthy walk through the maze of corridors -- still haven't found the cheese! I've become a regular sight in some of the far reaches of the sixth floor, and a few of the researchers and doctors and other staff greet me with some variation of "doing laps again, I see." One person offered a caution -- stay out of a particular dead-end corridor, because they do animal research there, and who knows what diseases might be in the air. Helpful tip!
One of the advantages of being in Chicago (as opposed to, say, St. Louis) is that I have relatives here. I have already been visited by three cousins, on two separate evenings. Sam had the misfortune of being here while a second-year medical student practiced his history-taking technique, so Sam got to hear more than he wanted to about bowel movements, urination, and so, so much more. I'm hoping I can provide better entertainment to future cousin visits.
My medical question of the day is, why am I losing weight? Unfortunately, I missed my chance to ask the attending physician, because I was out walking when he and his posse stopped by. It is common to lose weight during or shortly after chemo, for various reasons: nausea, loss of appetite, vomiting, diarrhea. However, I have none of those symptoms. I have a couple of theories: At my in-hospital high weight, I was receiving the maximum amount of IV fluid, and I was constipated. (Feel free to make predictable "full of shit" jokes in the comments.) I figure that was good for a few pounds. When I asked the head nurse, she didn't sign on to my theories but gave two more possible explanations.
First, I'm probably eating less than I think, and less than I normally do. I don't have ready access to snacks, or to seconds, since I have to order everything and it takes about 45 minutes for it to arrive. So, there's no immediate second helping of jambalaya (I wish) or spur-of-the-moment cookie binge. This delay seems like it could be (or already is) part of a successful weight loss strategy.
Second, chemo can rev up the metabolism. (At least, I think that's what she said.) So, combined with not eating as much as usual, I could be running a calorie deficit. Please -- Don't try this at home!
Wednesday, January 19, 2011
Suggestive Clothing
Those who know me will not be surprised to learn that I value practical and clean much more than neat. Jan occasionally has to send me back upstairs to avoid going to work sporting my terrorist look or my "what two-year-old dressed you" look. I don't believe that clothes make the man -- our acts define us, not our clothes.
However, I am noticing the power of what I wear to affect how I feel about myself, which can affect how I act. When I was "wearing" a wheelchair, I started thinking like an invalid and briefly forgot I could walk. This morning, wearing a hospital gown and lying in a hospital bed, when some doctors left my light on after their 7 a.m. visit, I was ready to page the nurse to turn it off before remembering that four steps is still well within my abilities. When I wear pajamas, I feel less feeble than when I wear the hospital gown, and when I wear running clothes, I feel pretty normal.
Yesterday, free of Jan's fashion guidance, I did a corridor walk in what I considered a practical if mismatched ensemble: gown, socks, running shoes. The running shoes made a huge difference in how I felt walking, compared to the no-skid socks I was worn before. Sick people walk corridor halls with their IV poles while wearing socks. With my running shoes, I'm a healthy guy with leukemia. The gown is practical because it's the only thing that the hospital will wash, and I'm saving my running shorts for working out on the treadmill.
It was a good walk. In the shoes, I can go faster, and I can kick Ivy's feet without adding to my toe bruise collection. Occasionally I felt an unaccustomed breeze, which made me wonder if I was totally wrapped up. But I checked a couple of times, and I had the gown tied up as tightly as it gets. Not that I minded the sensation -- I was thinking that maybe the Scots have a good idea with the kilts.
When I got back to my room, a nurse told me that she brought me an extra gown.
Me: What for?
Nurse: To wear like a cape over your first gown, on your walks.
Me: Why?
Nurse: I heard you were flashing.
Sorry, Jan!
However, I am noticing the power of what I wear to affect how I feel about myself, which can affect how I act. When I was "wearing" a wheelchair, I started thinking like an invalid and briefly forgot I could walk. This morning, wearing a hospital gown and lying in a hospital bed, when some doctors left my light on after their 7 a.m. visit, I was ready to page the nurse to turn it off before remembering that four steps is still well within my abilities. When I wear pajamas, I feel less feeble than when I wear the hospital gown, and when I wear running clothes, I feel pretty normal.
Yesterday, free of Jan's fashion guidance, I did a corridor walk in what I considered a practical if mismatched ensemble: gown, socks, running shoes. The running shoes made a huge difference in how I felt walking, compared to the no-skid socks I was worn before. Sick people walk corridor halls with their IV poles while wearing socks. With my running shoes, I'm a healthy guy with leukemia. The gown is practical because it's the only thing that the hospital will wash, and I'm saving my running shorts for working out on the treadmill.
It was a good walk. In the shoes, I can go faster, and I can kick Ivy's feet without adding to my toe bruise collection. Occasionally I felt an unaccustomed breeze, which made me wonder if I was totally wrapped up. But I checked a couple of times, and I had the gown tied up as tightly as it gets. Not that I minded the sensation -- I was thinking that maybe the Scots have a good idea with the kilts.
When I got back to my room, a nurse told me that she brought me an extra gown.
Me: What for?
Nurse: To wear like a cape over your first gown, on your walks.
Me: Why?
Nurse: I heard you were flashing.
Sorry, Jan!
Tuesday, January 18, 2011
So Far, So Good
I'm in my fifth day of chemotherapy. I'm not feeling any ill effects, but it is having the desired effect on my blood counts (pushing them down). The only time I have felt nauseous was during the Patriots-Jets game, but that passed.
As I mentioned, the blood counts are dropping as they should. Platelets are extremely low, leading to very easy bruising and bleeding. While out walking a few days ago, I kicked the feet of Ivy, my pole dancer partner, once with each foot. I now star in my own production of Joseph and the Amazing Technicolor DreamToes.
My neutrophil count is also extremely low. Neutrophils are one of the types of white blood cells, so I am extremely vulnerable to infection. Whenever I leave my room, I need to wear a mask. Eventually, I'll move to a wing where the rooms have two sets of doors and positive air pressure, so that potentially contaminated air from the corridor doesn't get in.
As I mentioned, the blood counts are dropping as they should. Platelets are extremely low, leading to very easy bruising and bleeding. While out walking a few days ago, I kicked the feet of Ivy, my pole dancer partner, once with each foot. I now star in my own production of Joseph and the Amazing Technicolor DreamToes.
My neutrophil count is also extremely low. Neutrophils are one of the types of white blood cells, so I am extremely vulnerable to infection. Whenever I leave my room, I need to wear a mask. Eventually, I'll move to a wing where the rooms have two sets of doors and positive air pressure, so that potentially contaminated air from the corridor doesn't get in.
Monday, January 17, 2011
Hooked Up
When under stress, we find ourselves doing things that are out of character.
In my case, I have hooked up with a pole dancer named "Ivy."
Paradoxically, she's a five-footer who is taller than I am.
We've become very attached.
We're practically inseparable.
We've been sleeping together every night.
Jan is not happy.
(Pictures below...)
In my case, I have hooked up with a pole dancer named "Ivy."
Paradoxically, she's a five-footer who is taller than I am.
We've become very attached.
We're practically inseparable.
We've been sleeping together every night.
Jan is not happy.
(Pictures below...)
 |
| I've hooked up with a pole dancer named "Ivy." |
 |
| Paradoxically, she's a five-footer who is taller than I am. |
 |
| We've become very attached. |
 |
| We're practically inseparable. |
 |
| We've been sleeping together every night. |
 |
| Jan is not happy. |
Sunday, January 16, 2011
Cruel Irony
The good news is,
I am the target of this wonderful outpouring of support, the kind that could manifest itself as cookies and other baked goods -- and there are some outstanding bakers in this group. I also have unlimited access to a large dessert menu from room service -- ice cream, pudding, cobbler, milkshakes, cookies, brownies...
The bad news is,
The chemotherapy has shifted my tastes such that the sweeter something is, the less appealing it is.
That just doesn't seem fair.
I am the target of this wonderful outpouring of support, the kind that could manifest itself as cookies and other baked goods -- and there are some outstanding bakers in this group. I also have unlimited access to a large dessert menu from room service -- ice cream, pudding, cobbler, milkshakes, cookies, brownies...
The bad news is,
The chemotherapy has shifted my tastes such that the sweeter something is, the less appealing it is.
That just doesn't seem fair.
Saturday, January 15, 2011
Second Day of Chemo
Still no nausea, but somewhat tired. Slept through the first half of the Steelers/Ravens game, as did the Steelers. Probably a combination of the chemo and the interrupted sleep (speaking for myself -- can't speak for the Steelers).
The doctors say I'm responding as I should to the chemo. Blood counts are staring to fall, but blood chemistry remains good.
I took a long walk up and down the corridors of this and other connected hospitals. It's a big complex, but I have exhausted the terrain. Tomorrow I might get clearance to use the treadmill -- I'm not usually a treadmill fan, but under the circumstances, it'll be a great improvement.
The doctors say I'm responding as I should to the chemo. Blood counts are staring to fall, but blood chemistry remains good.
I took a long walk up and down the corridors of this and other connected hospitals. It's a big complex, but I have exhausted the terrain. Tomorrow I might get clearance to use the treadmill -- I'm not usually a treadmill fan, but under the circumstances, it'll be a great improvement.
Treatment Plan
A summary of the treatment plan:
- Induce remission through chemotherapy. We're trying to kill nearly all the cells in my marrow.
- Recover in the hospital. I'll receive transfusions to make up for the blood cells I'm no longer creating myself. I'll need to be in the hospital for several weeks after chemo, to give my marrow a chance to grow back and take over blood production. Hopefully, my marrow comes back with no detectable signs of leukemia.
- When I'm sufficiently recovered, I leave the hospital for a couple of weeks to continue recovering. I have heard that I might have to stay in Chicago and that I might be able to go home. It depends in part how the various blood counts are doing. I'll be very vulnerable to infection, so I'll need to stay somewhat cocooned.
- Another round of chemotherapy. This time, we're trying to clear out the marrow to make room for healthy cells from my sister Mara, who (luckily for me) is an ideal match. At some point, she will come to Chicago and spend a week or two, the end result of which is a collection of some healthy stem cells from her blood.
- Transplant. This is done by transfusion. Mara's healthy cells are delighted to find all this unoccupied space in my bones, and they move in. If there are any lingering leukemic cells, the new cells will destroy them.
- More recovery, first in the hospital, then out.
Friday, January 14, 2011
Transport
The most unsettling part of the experience so far has not been the sometimes painful poking and pricking. What makes me shudder is the phrase, "I've put in a call to Transport."
The first 24 hours included a bunch of scans and a procedure (installing a multipurpose port just below my right clavicle). This meant having to travel all over the hospital complex, and such travel is managed by the Transport team.
First up was a heart test. Chemotherapy can weaken the heart muscle, so they want a baseline to compare to later. I'm getting ready to walk over to the testing with the Transport guy, but I see he has a wheelchair and expects me to get in it. Fine. Off we go.
It's a long walk/ride. I'm on the sixth floor of one hospital, and we're headed to the basement of another. It feels awkward to be taking such a long trip with somebody and not talk, so I try to make small talk. "How far do you think you walk in a day?" Unfortunately, I'm not very good at that, so it's just more awkward when the chit-chat dies.
Also awkward: riding elevators. Normally, if there are just a few people in an elevator, we arrange ourselves so that we're all side by side, facing the door and maybe turned a little bit toward each other. When people get on, we typically acknowledge them with at least a nod. Hospital elevators are long and narrow (to accommodate hospital beds), and they have doors front and back. We roll in and start going down to the basement. We stop and another person gets rolled in, behind me. There are now four people in the elevator -- two patients and two pushers -- and we're lined up in single file facing a door. It feels weird, not being able to see the other passengers and not being in control of what I can see.
We eventually arrive at the site of the first test. My transporter rolls me next to a wall in a unit with curtained bays on both sides, locks my wheels, and takes off. Soon, a technician shows up and wheels me into the room. We do our test on equipment being run by a Macintosh Power PC 8100 (which Wikipedia tells me was introduced in 1994). I remark on the age of the computer, and the tech sighs. They're praying the computer doesn't die, because they no longer have the disks (for the testing software, I assume).
The test is quick, the tech wheels me back out to the corridor, locks my wheels, brings me a cup of water, and says, "I've put in a call to Transport."
Then he's gone. It's kind of late, and the unit appears deserted. Did everybody go home? There's the medical background noise of pumping, whirring, beeping, but no voices. The curtains move slightly, as if there were a breeze. But we're in a basement, so maybe it's ghosts -- the ghosts of patients left behind at the end of the day. About 30 minutes in, a staffer walks by. I ask how long one should expect to wait for a ride. She's not sure, but she thinks maybe because it's so late, there are fewer Transporters available, so it could take 30 minutes. Or more. I have no watch, but I'm pretty sure nearly an hour passes in all... just me and my chair and the medical white noise.
It turns out that being pushed in a wheelchair has cast a debilitating spell on me. I have gone from athlete to invalid in a single ride. I have finished my cup of water, and there is still no sign of Transport, or anyone else. I keep looking around for a staff member who can refill my cup. Suddenly I remember ... I can walk! It's a miracle! I walk down to the end of unit, where I saw a water cooler.
As I approach, a large man lumbers into the unit from a different corridor, also headed for the water. He gets there first. He sits down next to the dispenser, catching his breath. I wait. He recovers enough to get some water, and then I get mine. He's slumped in the chair next to the cooler, I'm looking at the familiar collection of outdated (yet somehow timeless!) women's and golfing magazines. The tech pokes his head out of his office and says, "Still here, Mr. Seeley?" The huffing and puffing man looks up and asks, "Are you Mr. Seeley? I thought you were still in testing." It turns out that he is my transporter for going back to my room. I think "I thought you were still in testing" is code for "I was resting in the back room to recover from walking all the way over here."
I'm concerned. As soon as we start wheeling, he starts wheezing. At one point, in a tunnel between hospitals, the floor has a very slight dip. We go into it with a little speed from the downhill portion, but we're losing steam quickly as we climb out. "I think I can. I think I can." We barely make it out. I'm thinking maybe we should switch places. "So, how far do you think you walk in a day?" "Too damn far, that's for sure."
Back to my room two hours after I left -- 10 minutes of testing, 110 minutes of travel or waiting to travel. My nurse doesn't think there are any more tests for the night, so I order dinner. Baked fish, red beans and rice, side salad, apple, orange, pudding. Then we learn I'm going for more tests, and I leave in a chair just as my meal arrives, at 7:00.
This time we're going for CT scans and X-rays, looking for infections in the sinuses and lungs. Yet another transporter, more elevator rides. Dropped off at the CT place, go right into the test, back into the chair. "I've put in a call to Transport."
And then the tech is gone, and I'm hanging out by myself again, this time in the CT room. Ten minutes later the tech comes back, unlocks my wheels, and says, "I'll just take you to X-ray myself."
At the X-ray place, I get dropped by a reception desk, but (naturally) my back is to the receptionists. Kind of a long wait, during which the Rush Limbaugh fan behind the desk tries to explain to his colleague, a young black woman, why she should not vote for the "Dumbocrats. Get it? I call them the Dumbocrats. Because they're so dumb." She is not persuaded, because she already doesn't vote for the Democrats, or anybody else. Because "they just do what they want to do, no matter who you vote for." (I can't say she's totally wrong about that.) The conversation keeps going on behind me, the passionately misinformed trying to persuade the ignorantly uninterested that it's really the Dumbocrats who are the party of the rich people. Like most fans of talk radio talking points, he has a lot of numbers, like the number of Goldman Sachs alumni advising Obama on economic matters. (OK, I can't say he's totally wrong about that.)
An X-ray tech comes to rescue me. In, out, back to the reception desk. "I've put in a call to Transport."
I have another epiphany. I'm on wheels! I unlock the wheels and entertain myself by carving figure 8s in front of the reception desk until Transport finally shows up. I get back to my room at 9. The dinner is, surprisingly, still warm and, not surprisingly, not very good. But no more Transport for the night. Yay!
The first 24 hours included a bunch of scans and a procedure (installing a multipurpose port just below my right clavicle). This meant having to travel all over the hospital complex, and such travel is managed by the Transport team.
First up was a heart test. Chemotherapy can weaken the heart muscle, so they want a baseline to compare to later. I'm getting ready to walk over to the testing with the Transport guy, but I see he has a wheelchair and expects me to get in it. Fine. Off we go.
It's a long walk/ride. I'm on the sixth floor of one hospital, and we're headed to the basement of another. It feels awkward to be taking such a long trip with somebody and not talk, so I try to make small talk. "How far do you think you walk in a day?" Unfortunately, I'm not very good at that, so it's just more awkward when the chit-chat dies.
Also awkward: riding elevators. Normally, if there are just a few people in an elevator, we arrange ourselves so that we're all side by side, facing the door and maybe turned a little bit toward each other. When people get on, we typically acknowledge them with at least a nod. Hospital elevators are long and narrow (to accommodate hospital beds), and they have doors front and back. We roll in and start going down to the basement. We stop and another person gets rolled in, behind me. There are now four people in the elevator -- two patients and two pushers -- and we're lined up in single file facing a door. It feels weird, not being able to see the other passengers and not being in control of what I can see.
We eventually arrive at the site of the first test. My transporter rolls me next to a wall in a unit with curtained bays on both sides, locks my wheels, and takes off. Soon, a technician shows up and wheels me into the room. We do our test on equipment being run by a Macintosh Power PC 8100 (which Wikipedia tells me was introduced in 1994). I remark on the age of the computer, and the tech sighs. They're praying the computer doesn't die, because they no longer have the disks (for the testing software, I assume).
The test is quick, the tech wheels me back out to the corridor, locks my wheels, brings me a cup of water, and says, "I've put in a call to Transport."
Then he's gone. It's kind of late, and the unit appears deserted. Did everybody go home? There's the medical background noise of pumping, whirring, beeping, but no voices. The curtains move slightly, as if there were a breeze. But we're in a basement, so maybe it's ghosts -- the ghosts of patients left behind at the end of the day. About 30 minutes in, a staffer walks by. I ask how long one should expect to wait for a ride. She's not sure, but she thinks maybe because it's so late, there are fewer Transporters available, so it could take 30 minutes. Or more. I have no watch, but I'm pretty sure nearly an hour passes in all... just me and my chair and the medical white noise.
It turns out that being pushed in a wheelchair has cast a debilitating spell on me. I have gone from athlete to invalid in a single ride. I have finished my cup of water, and there is still no sign of Transport, or anyone else. I keep looking around for a staff member who can refill my cup. Suddenly I remember ... I can walk! It's a miracle! I walk down to the end of unit, where I saw a water cooler.
As I approach, a large man lumbers into the unit from a different corridor, also headed for the water. He gets there first. He sits down next to the dispenser, catching his breath. I wait. He recovers enough to get some water, and then I get mine. He's slumped in the chair next to the cooler, I'm looking at the familiar collection of outdated (yet somehow timeless!) women's and golfing magazines. The tech pokes his head out of his office and says, "Still here, Mr. Seeley?" The huffing and puffing man looks up and asks, "Are you Mr. Seeley? I thought you were still in testing." It turns out that he is my transporter for going back to my room. I think "I thought you were still in testing" is code for "I was resting in the back room to recover from walking all the way over here."
I'm concerned. As soon as we start wheeling, he starts wheezing. At one point, in a tunnel between hospitals, the floor has a very slight dip. We go into it with a little speed from the downhill portion, but we're losing steam quickly as we climb out. "I think I can. I think I can." We barely make it out. I'm thinking maybe we should switch places. "So, how far do you think you walk in a day?" "Too damn far, that's for sure."
Back to my room two hours after I left -- 10 minutes of testing, 110 minutes of travel or waiting to travel. My nurse doesn't think there are any more tests for the night, so I order dinner. Baked fish, red beans and rice, side salad, apple, orange, pudding. Then we learn I'm going for more tests, and I leave in a chair just as my meal arrives, at 7:00.
This time we're going for CT scans and X-rays, looking for infections in the sinuses and lungs. Yet another transporter, more elevator rides. Dropped off at the CT place, go right into the test, back into the chair. "I've put in a call to Transport."
And then the tech is gone, and I'm hanging out by myself again, this time in the CT room. Ten minutes later the tech comes back, unlocks my wheels, and says, "I'll just take you to X-ray myself."
At the X-ray place, I get dropped by a reception desk, but (naturally) my back is to the receptionists. Kind of a long wait, during which the Rush Limbaugh fan behind the desk tries to explain to his colleague, a young black woman, why she should not vote for the "Dumbocrats. Get it? I call them the Dumbocrats. Because they're so dumb." She is not persuaded, because she already doesn't vote for the Democrats, or anybody else. Because "they just do what they want to do, no matter who you vote for." (I can't say she's totally wrong about that.) The conversation keeps going on behind me, the passionately misinformed trying to persuade the ignorantly uninterested that it's really the Dumbocrats who are the party of the rich people. Like most fans of talk radio talking points, he has a lot of numbers, like the number of Goldman Sachs alumni advising Obama on economic matters. (OK, I can't say he's totally wrong about that.)
An X-ray tech comes to rescue me. In, out, back to the reception desk. "I've put in a call to Transport."
I have another epiphany. I'm on wheels! I unlock the wheels and entertain myself by carving figure 8s in front of the reception desk until Transport finally shows up. I get back to my room at 9. The dinner is, surprisingly, still warm and, not surprisingly, not very good. But no more Transport for the night. Yay!
Thursday, January 13, 2011
"This will come as a shock."
A brief timeline, for the curious.
- Late 2004, I was rejected while trying to donate blood due to anemia. Upon further inspection, all my blood counts were low, and I was diagnosed with aplastic anemia by doctors at the University of Chicago. This was most likely a side effect of a medication (sulfasalazine) I had been taking since 1988 to control ulcerative colitis. The condition wasn't so severe as to require treatment, but it did merit careful watching. Went off sulfasalazine, blood counts improved, though they never came all the way back.
- Late 2010, my regular blood test raises a red flag, which leads to a consultation with a hematologist at Carle, which leads to a referral back to the University of Chicago. No noteworthy symptoms.
- January 3 -- Meet some doctors at U of C. Based on history and most recent blood work, a biopsy is in order. Maybe the aplastic anemia is getting worse, maybe it's something else. Not super urgent. The next biopsy opening is January 18, and the next followup appointment opening (Mondays only) is January 24. The lack of urgency is comforting.
- January 4 -- Call from U of C. They now have a biopsy opening Thursday or Friday. I take one. I'm thinking, "How convenient."
- January 7 -- Biopsy. Typically there's no analysis over the weekend, but we can and do move the followup appointment up one week to January 17. Later that night, call from the doctor telling me that they will be analyzing the biopsy over the weekend after all, and so we could follow up the coming Monday if I want to. I'm thinking, "What fantastic customer service," though it occurs to me that perhaps things are more urgent than the doctors are letting on. Jan will be out of town on business, but (coincidentally) my mom is in Chicago visiting her brother. This means I will have a second person with me to receive the diagnosis.
- January 10, afternoon -- "This will come as a shock. You have acute leukemia." They started suspecting leukemia based on the January 3 bloodwork, and it was confirmed by the bone marrow biopsy. The doctors were pretty surprised, but not as surprised as I was. I feel fine! "You could enter the hospital tonight." Umm, I definitely need a little more time to get ready, and I have a teenage son alone at home. It was great to have my mom there, though unfortunately the "kiss the booboo to make it better" cure was not deemed effective.
- January 10, evening -- The drive home alone to Champaign was not as rough as I thought it would be. For the first time in my life, I had reason to say, "Sports talk radio is a blessing." The hosts and the callers were all so certain about the outcomes of the upcoming NFL playoffs that it's a wonder we even need to play the games, and as long as I paid attention to them, I was fine. When I started visualizing the difficult conversations I was about to have when I got home, I got a little shaky. But then Brian from Bolingbrook would weigh in why the Bears had better be careful about the Seahawks, and I would be under control again. Maybe I should look into developing an app that plays sports talk, to be used therapeutically as a mental and emotional anesthetic.
- January 12 -- Admitted to the hospital.
- January 13 -- Starting chemotherapy, 10 days after my first consultation.
I'll describe the treatment plan in another post.
Good News, Bad News
The good news is, there is a treadmill.
The bad news is, I don't get to run outside for a month.
The good news is, my room has windows all along one wall.
The bad news is, my view is the side of the next building.
The good news is, this isn't my eventual room.
The bad news is, my next room has a similar view.
The good news is, I can wear pajamas all day.
The bad news is, I could get used to that.
The good news is, next year's end-of-year letter won't sound like a rerun of the last few.
The bad news is, saying "end-of-year" feels like tempting fate.
The good news is, plenty of time to read or draw.
The bad news is, plenty of time to worry.
The good news is, I have great support from family, friends, and work.
The bad news is, I can't think of any clever downside to go on this line.
The good news is, I feel perfectly healthy.
The bad news is, the bone marrow biopsy says I'm not.
The good news is, I'm in one of the best facilities in the world for treating AML.
The bad news is, I'm being treated for AML.
The good news is, there is a treadmill.
The bad news is, I don't get to run outside for a month.
The good news is, my room has windows all along one wall.
The bad news is, my view is the side of the next building.
The good news is, this isn't my eventual room.
The bad news is, my next room has a similar view.
The good news is, I can wear pajamas all day.
The bad news is, I could get used to that.
The good news is, next year's end-of-year letter won't sound like a rerun of the last few.
The bad news is, saying "end-of-year" feels like tempting fate.
The good news is, plenty of time to read or draw.
The bad news is, plenty of time to worry.
The good news is, I have great support from family, friends, and work.
The bad news is, I can't think of any clever downside to go on this line.
The good news is, I feel perfectly healthy.
The bad news is, the bone marrow biopsy says I'm not.
The good news is, I'm in one of the best facilities in the world for treating AML.
The bad news is, I'm being treated for AML.
The good news is, there is a treadmill.
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