Today's regular Monday checkup was scheduled for 2:30, and we got there well ahead of time so that I could have my labs drawn enough in advance that some results would be ready by the time we met with my doctor. We were through with the lab and in the waiting room by 1:30.
I take advantage of the extra time to get in a walk, up and down the corridor. It's actually a scenic walk, with attractive architectural features, looking out over an airy atrium.
My mom inquires whether I could have my monthly inhalation treatment while waiting. A nurse goes into the back to check and comes back with a negative answer.
I finish walking at 2:20 and join my mom in the waiting room. It's clear my doctor is running late, based on how many times a nurse comes out to talk to people other than me about how there isn't a room ready yet.
Around 3:15, a nurse calls me in and takes my vitals.
The doctor comes in around 3:45. "Do you want some good news?" Always.
She hands me a sheet of paper with the results of the test for "deletions of 7q31 and loss of chromosome 7," which is the genetic marker of my leukemia. Out of 400 cells, zero cells had the marker.
"Do you want some more good news? Actually, it's all good news today."
The next sheet contains results for the XX/XY breakdown of cells in the marrow. Out of 400 cells, 399 were XX (donor cells from Mara). One lone male cell does not concern my doctor.
In addition to those pieces of good (great) news, my main counts are stable, my organs are functioning normally, and I'm slowly gaining weight.
All of which adds up to: I get to go home, somewhere I haven't been in more than four and a half months.
Then my doctor is surprised and annoyed to learn that I hadn't done my inhalation therapy (to fend off pneumonia) during my long wait to meet with her. Her recollection of her conversation with the nurse was that she emphatically stated I should take my therapy before my appointment, not after. Anyway, I have an anticlimactic post-appointment appointment with a mask hooked up to an oxygen tank and a small vial of vile liquid, and we don't leave the clinic until 5:00.
= = =
And now I am home! It's great to be here.
Tuesday, February 28, 2012
Sunday, February 26, 2012
Now Playing With a Full Deck
(I'd like to thank childhood friend Peter for the title. And my mother and father, without whom this would not have been possible. And... what? The playing-off music already?!)
My birthday was last Thursday, February 23. I made it to 52.
On Monday, my friend Jeff drove me to my weekly check-up. My doctor gave me a report of steady blood counts and an overall thumbs up for how I'm doing. She did not give me preliminary biopsy results (I'll get them tomorrow) or permission to go home, yet. She did give me, in case I had forgotten, another reminder that getting here was far from certain.
How far from certain? I believe her words were, "You are a miracle." Huh. I have to give her credit for communicating enough of the gravity of the situation, back in November, that I had a reasonable sense of what I was up against, without making the odds seem so bleak that I might lose hope. Not being a believer in miracles, I don't know how I would have handled being told something that amounted to, "You need a miracle." Probably not well.
Fortunately, you don't have to believe in miracles to be the beneficiary of one.
The rest of the week brought my mom; chocolate chip cookies, chocolate cake, candied ginger, and chocolate-coated ginger; and cards, calls, and countless e-mails and Facebook messages, confirming, inescapably, that I am again the same age as Jan — that would be 52, Jan — and I don't get to use my stupid "cougar" joke for another year.
Looking forward to it!
My birthday was last Thursday, February 23. I made it to 52.
On Monday, my friend Jeff drove me to my weekly check-up. My doctor gave me a report of steady blood counts and an overall thumbs up for how I'm doing. She did not give me preliminary biopsy results (I'll get them tomorrow) or permission to go home, yet. She did give me, in case I had forgotten, another reminder that getting here was far from certain.
How far from certain? I believe her words were, "You are a miracle." Huh. I have to give her credit for communicating enough of the gravity of the situation, back in November, that I had a reasonable sense of what I was up against, without making the odds seem so bleak that I might lose hope. Not being a believer in miracles, I don't know how I would have handled being told something that amounted to, "You need a miracle." Probably not well.
Fortunately, you don't have to believe in miracles to be the beneficiary of one.
The rest of the week brought my mom; chocolate chip cookies, chocolate cake, candied ginger, and chocolate-coated ginger; and cards, calls, and countless e-mails and Facebook messages, confirming, inescapably, that I am again the same age as Jan — that would be 52, Jan — and I don't get to use my stupid "cougar" joke for another year.
Looking forward to it!
Wednesday, February 22, 2012
Valentine's Week: Birthday Thursday
Thursday, February 16, was Jan's birthday. Her best friend, Maggi, sent her a very dense chocolate brownie cake and an elaborate balloon bouquet. (No flowers allowed for post-transplant patients.) Only one balloon died in the while being liberated, with a knife, from the plastic bag keeping them all together. She also got some candy and some tea and cards and calls. I got her a ... um ... I owe her.
Jan's birthday is my opportunity to remind her that she married a younger man. "Cradle robber" doesn't really apply, since I'm not that young, so these days I go with "cougar." A week's difference in our ages doesn't really qualify, but that doesn't stop me.
Turning 50 hadn't been so bad, but Jan wasn't that happy about turning 52. I, on the other hand, am quite happy about it. As they say, getting older beats the alternative.
Jan's birthday is my opportunity to remind her that she married a younger man. "Cradle robber" doesn't really apply, since I'm not that young, so these days I go with "cougar." A week's difference in our ages doesn't really qualify, but that doesn't stop me.
Turning 50 hadn't been so bad, but Jan wasn't that happy about turning 52. I, on the other hand, am quite happy about it. As they say, getting older beats the alternative.
Sunday, February 19, 2012
Valentine's Week: Nose-talgia Tuesday
Tuesday is Valentine's Day. We celebrate by returning to the clinic to meet with the ENT surgeon who excavated my sinuses a couple of times back in November. I don't know what we're going to do today — could be just a chat, could be a scoping. I'm hoping for a chat.
It's a 12:15 appointment, but the doctor is running well behind schedule. I fill out a questionnaire, including a review of my medications. I get in some walking while waiting. A nurse then calls me into a room, takes my vitals, and reviews my medications on the computer.
Then a doctor comes in. I remember him from my hospital time. He asks a bunch of questions about my sinuses. He also reviews my medications. (I also reviewed my medications during my clinic visit on Monday. They're very thorough about the meds!) We are then shepherded to another room, and the doctor says, "You can see from the tower what you're in for." This means I'm getting scoped. He speaks softly, in a tone that I think he intends to be comforting. It doesn't work.
He numbs my sinuses by spraying something into each nostril. It drips down the back of my throat, tastes terrible, and numbs my throat to the point that it feels like I can't swallow. "This will wear off in half an hour," he tells me. He leaves.
My wife and I continue waiting, wondering if the surgeon is going to show up before the numbing effect is gone. About 20 minutes after the spraying, she enters, sprays some decongestant up each nostril, and gets right to it. Jan was prepared to leave, but the surgeon assures us nothing upsetting is going to happen. I know that should relax me, and in fact it goes quickly and doesn't hurt at all, but I notice that I am clenching very tightly some gauze pads they gave me to wipe my nose after the spraying.
The scope is a stiff, narrow metal tube with a light and a camera at the tip. The camera image feeds into a monitor on the tower next to my chair, and the surgeon is taking pictures and conducting a guided tour of my sinuses for the nurse, and maybe for Jan, but Jan has her head turned and her eyes closed, as do I. "This is where we took out [some bone]. Look how nice and open it is here. And over here ... Hmmm..."
Hmmm? What does that mean?
At the end of the tour, some pictures spill out of the tower and land on the floor, a sequence of circular images, mostly pinkish and fleshy, the "After" photos for the makeover of what used be Joe's Fungal Chambers of Horror.
Meanwhile, the surgeon sits in a chair and fills out a form with her findings. I'm still wondering what Hmmm meant when she looks up and says, "I'm very happy." In that case, so am I! Everything looks good to her. Yay! Pointing to some of the current photos, she tells me that some of my corresponding "Before" photos are posted for other surgeons to see, for educational purposes. Um... yay?
"That was a scary time," she says.
(Yes. When your oncologist tells you you're entering "think about how you want to spend what might be your last few weeks" territory, that is a scary time.)
The surgeon continued... Some ENT surgeons would not have operated on me, due to my lack of an immune system and platelets at the time. Luckily, she was the surgeon on call the night it was determined that I had the fungal infection in my sinuses. And, luckily, her résumé included several years working at a hospital with a lot of transplant patients, so she was used to, as she put it, just "hanging some bags" (of platelets, on the IV pole) and going in. In cases like mine, waiting until the conditions are right for surgery saves a lot of work, because the patient dies.
But they didn't wait back in November, and I get to celebrate Valentine's Day with my Valentine.
It's a 12:15 appointment, but the doctor is running well behind schedule. I fill out a questionnaire, including a review of my medications. I get in some walking while waiting. A nurse then calls me into a room, takes my vitals, and reviews my medications on the computer.
Then a doctor comes in. I remember him from my hospital time. He asks a bunch of questions about my sinuses. He also reviews my medications. (I also reviewed my medications during my clinic visit on Monday. They're very thorough about the meds!) We are then shepherded to another room, and the doctor says, "You can see from the tower what you're in for." This means I'm getting scoped. He speaks softly, in a tone that I think he intends to be comforting. It doesn't work.
He numbs my sinuses by spraying something into each nostril. It drips down the back of my throat, tastes terrible, and numbs my throat to the point that it feels like I can't swallow. "This will wear off in half an hour," he tells me. He leaves.
My wife and I continue waiting, wondering if the surgeon is going to show up before the numbing effect is gone. About 20 minutes after the spraying, she enters, sprays some decongestant up each nostril, and gets right to it. Jan was prepared to leave, but the surgeon assures us nothing upsetting is going to happen. I know that should relax me, and in fact it goes quickly and doesn't hurt at all, but I notice that I am clenching very tightly some gauze pads they gave me to wipe my nose after the spraying.
The scope is a stiff, narrow metal tube with a light and a camera at the tip. The camera image feeds into a monitor on the tower next to my chair, and the surgeon is taking pictures and conducting a guided tour of my sinuses for the nurse, and maybe for Jan, but Jan has her head turned and her eyes closed, as do I. "This is where we took out [some bone]. Look how nice and open it is here. And over here ... Hmmm..."
Hmmm? What does that mean?
At the end of the tour, some pictures spill out of the tower and land on the floor, a sequence of circular images, mostly pinkish and fleshy, the "After" photos for the makeover of what used be Joe's Fungal Chambers of Horror.
Meanwhile, the surgeon sits in a chair and fills out a form with her findings. I'm still wondering what Hmmm meant when she looks up and says, "I'm very happy." In that case, so am I! Everything looks good to her. Yay! Pointing to some of the current photos, she tells me that some of my corresponding "Before" photos are posted for other surgeons to see, for educational purposes. Um... yay?
"That was a scary time," she says.
(Yes. When your oncologist tells you you're entering "think about how you want to spend what might be your last few weeks" territory, that is a scary time.)
The surgeon continued... Some ENT surgeons would not have operated on me, due to my lack of an immune system and platelets at the time. Luckily, she was the surgeon on call the night it was determined that I had the fungal infection in my sinuses. And, luckily, her résumé included several years working at a hospital with a lot of transplant patients, so she was used to, as she put it, just "hanging some bags" (of platelets, on the IV pole) and going in. In cases like mine, waiting until the conditions are right for surgery saves a lot of work, because the patient dies.
But they didn't wait back in November, and I get to celebrate Valentine's Day with my Valentine.
Thursday, February 16, 2012
Valentine's Week: Cowboy Monday
Jan, my favorite minder, is here this week. It's the first time we've been able spend days and nights together in four months. This is good!
On Monday, we go to my weekly appointment with my doctor. My blood counts are roughly the same as the week before, and probably a little suppressed by GVHD. My rash has mostly faded, so my doctor decides it's time to poke the hornet's nest a little. She describes what I'm going to do as tapering my immunosuppressant, although skipping one day, taking it one more day, and then stopping altogether seems too abrupt to be called "tapering." In any event, we are discontinuing the drug more than a month earlier than the typical schedule.
On the other hand, I already have (just barely) sub-therapeutic levels of the medication in my blood, so in that sense stopping completely might not be a drastic change. It might be enough to trigger another round of GVHD — maybe of the skin (symptom: rash), or of the intestines (symptoms: diarrhea, cramps, vomiting), or of the liver (symptom: jaundice [maybe vomiting, too]).
My doctor reminds us that a little GVHD is good, not for its own sake, but because it indicates that my donor cells include some T cells that recognize me as "other," which offers hope they also recognize leukemic cells as "other." On the other hand, as she further reminds us, too much GVHD is life-threatening, and I don't need any more of that. If any of the symptoms get too serious, I can go back on the immunosuppressant and/or take some steroids
When do I get to go home? Not yet. My doctor would like to see how I handle the medication change. She even seems a little superstitious, as if going home is asking for trouble, the way not having an umbrella causes rain. All I know is that I am one day closer to going home.
When the nurse stops by near the end of the appointment, my doctor tells her she's taking me off the immunosuppressant. She says something like, "I'm being a bit of a cowboy."
Giddyup.
On Monday, we go to my weekly appointment with my doctor. My blood counts are roughly the same as the week before, and probably a little suppressed by GVHD. My rash has mostly faded, so my doctor decides it's time to poke the hornet's nest a little. She describes what I'm going to do as tapering my immunosuppressant, although skipping one day, taking it one more day, and then stopping altogether seems too abrupt to be called "tapering." In any event, we are discontinuing the drug more than a month earlier than the typical schedule.
On the other hand, I already have (just barely) sub-therapeutic levels of the medication in my blood, so in that sense stopping completely might not be a drastic change. It might be enough to trigger another round of GVHD — maybe of the skin (symptom: rash), or of the intestines (symptoms: diarrhea, cramps, vomiting), or of the liver (symptom: jaundice [maybe vomiting, too]).
My doctor reminds us that a little GVHD is good, not for its own sake, but because it indicates that my donor cells include some T cells that recognize me as "other," which offers hope they also recognize leukemic cells as "other." On the other hand, as she further reminds us, too much GVHD is life-threatening, and I don't need any more of that. If any of the symptoms get too serious, I can go back on the immunosuppressant and/or take some steroids
When do I get to go home? Not yet. My doctor would like to see how I handle the medication change. She even seems a little superstitious, as if going home is asking for trouble, the way not having an umbrella causes rain. All I know is that I am one day closer to going home.
When the nurse stops by near the end of the appointment, my doctor tells her she's taking me off the immunosuppressant. She says something like, "I'm being a bit of a cowboy."
Giddyup.
Thursday, February 9, 2012
Ambling Along
Monday's appointment was upbeat.
My blood counts were a little lower than before the weekend, but that can be caused by either GVHD or sampling error. My doctor seconded the earlier visual diagnosis of my rash being GVHD, saying it had a classic appearance. By then the rash was still visible over much of my body, but it wasn't itchy enough to cause me to lube up, and it has continued to subside.
A week ago, on Thursday, the transplant team had discussed my case and was preparing to take me off the immunosuppressant drugs in order to trigger GVHD, possibly as soon as this week. On Friday, I showed up in the clinic with GVHD, so we're going to stick with the current dosage.
I am no longer getting magnesium supplements, which are given intravenously, so I will have my PICC line removed this coming Monday. This will be a big step toward normalcy. I can forget about the line dangling out of my arm for long periods of time, but it creeps into my consciousness at night when I change sleeping positions, and it makes showering difficult because it has to be kept dry. I won't miss it. Potassium levels are also OK, which means one monster pill a day I no longer take.
Today, when I pulled my arm out of my long-sleeved T-shirt so that my brother and I could flush the PICC line, the hairs on my arm — just about the last part of my body to have hair — looked like they were dusted with frost. It was enchanting for the second or two it took me to realize the frost was dead skin cells that had accumulated since I got up in the morning. I assume the rash has caused more than the usual number of skin cells to slough off. (Note to self: Wash the sheets.)
My brother the professor has been my minder this week. For now, he has more hair on his head than I do. He is taking the week between his school's January term and the start of the spring semester to keep an eye on me, keeping up my family's superb support. He does his professor stuff, prepares meals, shops, cleans, and takes walks with me. I do a little work, eat, sleep, take walks. This week's new walk was to get all the way to the lakeshore from the apartment. It was dark, so we got to see downtown Chicago's skyscrapers all lit up, off to the north.
My next minder is Jan, for a whole week. I feel well enough that it should feel like a couple spending time together instead of a patient being cared for by a round-the-clock nurse. Sounds good to me!
My blood counts were a little lower than before the weekend, but that can be caused by either GVHD or sampling error. My doctor seconded the earlier visual diagnosis of my rash being GVHD, saying it had a classic appearance. By then the rash was still visible over much of my body, but it wasn't itchy enough to cause me to lube up, and it has continued to subside.
A week ago, on Thursday, the transplant team had discussed my case and was preparing to take me off the immunosuppressant drugs in order to trigger GVHD, possibly as soon as this week. On Friday, I showed up in the clinic with GVHD, so we're going to stick with the current dosage.
I am no longer getting magnesium supplements, which are given intravenously, so I will have my PICC line removed this coming Monday. This will be a big step toward normalcy. I can forget about the line dangling out of my arm for long periods of time, but it creeps into my consciousness at night when I change sleeping positions, and it makes showering difficult because it has to be kept dry. I won't miss it. Potassium levels are also OK, which means one monster pill a day I no longer take.
Today, when I pulled my arm out of my long-sleeved T-shirt so that my brother and I could flush the PICC line, the hairs on my arm — just about the last part of my body to have hair — looked like they were dusted with frost. It was enchanting for the second or two it took me to realize the frost was dead skin cells that had accumulated since I got up in the morning. I assume the rash has caused more than the usual number of skin cells to slough off. (Note to self: Wash the sheets.)
My brother the professor has been my minder this week. For now, he has more hair on his head than I do. He is taking the week between his school's January term and the start of the spring semester to keep an eye on me, keeping up my family's superb support. He does his professor stuff, prepares meals, shops, cleans, and takes walks with me. I do a little work, eat, sleep, take walks. This week's new walk was to get all the way to the lakeshore from the apartment. It was dark, so we got to see downtown Chicago's skyscrapers all lit up, off to the north.
My next minder is Jan, for a whole week. I feel well enough that it should feel like a couple spending time together instead of a patient being cared for by a round-the-clock nurse. Sounds good to me!
Friday, February 3, 2012
Rash Behavior
On Wednesday, I noticed that my face was a little bumpy. I thought it might be all the missing whiskers trying to emerge, in honor of the springlike weather. Speaking of the weather, my mom and I have taken advantage of Chicago's extremely mild winter weather this week to take some lengthy walks.
On Thursday, the skin on my face had a texture somewhat like the surface of a bowl of oatmeal, and the top of my bald head was bumpy, and my neck was a little itchy. During the night, into Friday morning, my neck got very itchy. As did my face, and the top of my head.
This morning (Friday), everywhere that had been bumpy or lumpy or oatmealy or itchy is still that way, and the rash has spread to my lower legs. I call my doctor, who tells me to arrange a visit to the clinic to get it checked out. I get an appointment in the early afternoon.
The first step at the clinic turns out to be lab work. When I take off my fleece to expose my arm for the blood draw, I see that both arms are covered with small raised red welts.
It's itchy and unaesthetic, but I'm thinking it's probably a good thing. One manifestation of graft-vs-host disease is a skin rash, and having some GVHD correlates with better transplant outcomes. GVHD indicates a solid immune response from the graft (donor) cells. If the new immune system is attacking an organ like the skin, the thinking goes, there is a better chance that it is also attacking any lingering leukemia (graft-vs-leukemia). Too much GVHD can be very bad, and even fatal, but a skin rash like the one I have, which is relatively mild, is not life-threatening.
My appointment is with a physician's assistant (PA) who works with the Oncology team. The last time I saw her, she was performing my most recent bone marrow biopsy, and I was about to re-enter the hospital because of my bladder infection.
She checks the skin on my face, back, arms, chest, back, legs... She is confident it's GVHD. She asks about any pain (none), intestinal issues (none), eye issues (a little irritated). If there is a dermatologist available on this Friday afternoon, she would like to get a skin biopsy to get absolute confirmation that this is GVHD, but she determines that none is available, and she's quite sure anyway.
After consulting with my doctor, the PA prescribes a couple of steroid ointments, one that is too strong to use on the face, and a second that I can use on the face. She also recommends an over-the-counter antihistamine for itching, and eye drops.
By the time I get home, several hours later, I'm ready for a nap. I'm itchy, so I take an antihistamine and apply my ointments. Both ointments behave as if they have a petroleum jelly base, and applying them is like applying Vaseline on my head, face, back, and arms.
Unlike lotions, which sink in, ointments just sit grossly, greasily on the skin. If someone were trying to catch me, I would be hard to hold on to. If I were trying to take a nap, and I am, I would feel pretty disgusting, and I do. But I fall asleep anyway.
= = =
Before my appointment was over, I got preliminary lab results. The last three labs (Thursday 1/26, Monday 1/30, and today (2/3) show solid increases in the main three types of blood cells.
White blood cells: 3.6, 4.1, 5.8
Hemoglobin (standing in for red blood cells): 10.4, 10.6, 11.2
Platelets: 59, 71, 84
I think these numbers, and the onset of GVHD, are both good signs.
When talking with my doctor this morning, I learned that the consensus on the transplant team (when they met yesterday) was to take me off my immunosuppressant medication (which would probably trigger GVHD) and do another bone marrow biopsy pretty soon instead of waiting for day 100 as is typical. Now that I appear to have GVHD at the current immunosuppressant dosage, that plan may get revisited.
On Thursday, the skin on my face had a texture somewhat like the surface of a bowl of oatmeal, and the top of my bald head was bumpy, and my neck was a little itchy. During the night, into Friday morning, my neck got very itchy. As did my face, and the top of my head.
This morning (Friday), everywhere that had been bumpy or lumpy or oatmealy or itchy is still that way, and the rash has spread to my lower legs. I call my doctor, who tells me to arrange a visit to the clinic to get it checked out. I get an appointment in the early afternoon.
The first step at the clinic turns out to be lab work. When I take off my fleece to expose my arm for the blood draw, I see that both arms are covered with small raised red welts.
It's itchy and unaesthetic, but I'm thinking it's probably a good thing. One manifestation of graft-vs-host disease is a skin rash, and having some GVHD correlates with better transplant outcomes. GVHD indicates a solid immune response from the graft (donor) cells. If the new immune system is attacking an organ like the skin, the thinking goes, there is a better chance that it is also attacking any lingering leukemia (graft-vs-leukemia). Too much GVHD can be very bad, and even fatal, but a skin rash like the one I have, which is relatively mild, is not life-threatening.
My appointment is with a physician's assistant (PA) who works with the Oncology team. The last time I saw her, she was performing my most recent bone marrow biopsy, and I was about to re-enter the hospital because of my bladder infection.
She checks the skin on my face, back, arms, chest, back, legs... She is confident it's GVHD. She asks about any pain (none), intestinal issues (none), eye issues (a little irritated). If there is a dermatologist available on this Friday afternoon, she would like to get a skin biopsy to get absolute confirmation that this is GVHD, but she determines that none is available, and she's quite sure anyway.
After consulting with my doctor, the PA prescribes a couple of steroid ointments, one that is too strong to use on the face, and a second that I can use on the face. She also recommends an over-the-counter antihistamine for itching, and eye drops.
By the time I get home, several hours later, I'm ready for a nap. I'm itchy, so I take an antihistamine and apply my ointments. Both ointments behave as if they have a petroleum jelly base, and applying them is like applying Vaseline on my head, face, back, and arms.
Unlike lotions, which sink in, ointments just sit grossly, greasily on the skin. If someone were trying to catch me, I would be hard to hold on to. If I were trying to take a nap, and I am, I would feel pretty disgusting, and I do. But I fall asleep anyway.
= = =
Before my appointment was over, I got preliminary lab results. The last three labs (Thursday 1/26, Monday 1/30, and today (2/3) show solid increases in the main three types of blood cells.
White blood cells: 3.6, 4.1, 5.8
Hemoglobin (standing in for red blood cells): 10.4, 10.6, 11.2
Platelets: 59, 71, 84
I think these numbers, and the onset of GVHD, are both good signs.
When talking with my doctor this morning, I learned that the consensus on the transplant team (when they met yesterday) was to take me off my immunosuppressant medication (which would probably trigger GVHD) and do another bone marrow biopsy pretty soon instead of waiting for day 100 as is typical. Now that I appear to have GVHD at the current immunosuppressant dosage, that plan may get revisited.
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