Today I had my regular Monday clinic visit with my doctor. After my last one, two weeks ago, I went straight from the clinic into the hospital to deal with my bladder infection. Since I was in the hospital last Monday, I didn't have a clinic appointment.
I went with my mom, who has been my Chicago caregiver for a week and will be here one more week. Over the course of dealing with this disease, now exceeding one year, my mom has been my good luck charm. When she is visiting, things go well. Maybe it's the cooking.
My doctor came in, smiling and remarking at how much better I looked than I had looked two weeks ago. She told us my blood counts were looking very good and showed us the printout she was carrying: white blood cells at 4.0 (normal), platelets at 71 (low, but enough of an increase to signify improvement instead of noise), hemoglobin roughly the same as last time. All encouraging, but what really matters is the biopsy results.
Then, and this felt like an afterthought, she reached into the pocket of her white lab coat and said, "Oh. I have more good news." She had the results of two tests carried out on my Day 30 bone marrow biopsy — the XX/XY breakdown (because my donor is female, this is a useful measurement of the), and the count of cells carrying deletion 7, a chromosomal abnormality that marks my leukemia cells.
The XX/XY breakdown is 100% / 0%, which is actually a teeny bit better than the corresponding result after my first transplant (99+% / <1%). I am woman, hear me roar!
The deletion 7 test found claims it found a few cells (3 out of 400), but this is considered a negative (good) result. The test typically has a little noise, and anything under 8 out of 400 is treated as equivalent to zero. My doctor hypothesizes that the testing process itself generates a few deletion 7 false positives. Another way of thinking about it is that my deletion 7 test results are indistinguishable from those of someone with no leukemia.
So, great news! On the other hand, across my celebratory mood lies the shadow of knowing I have received the best possible news before, after my Day 30 biopsy following my first transplant, and it wasn't good enough. On the other, other hand, I can't do any better than I'm doing, so I might as well celebrate — I had sparkling grape juice with dinner.
Monday, January 30, 2012
Thursday, January 26, 2012
It Only Hurts When I ... (cont.)
[This is a continuation of an earlier post. I have been out of the hospital, without any infection since Tuesday afternoon.]
Over the course of a week, I moved from it-only-hurts-when-I-breathe to it-only-hurts-when-I-laugh/sneeze/cough to it-only-hurts-when-I-pee to it-only-hurts-when-I-pee-and-I-have-to-pee-all-the-time-and-why-is-there-blood.
So, I ended up back in the hospital to treat a strongly suspected (and then confirmed) viral bladder infection. It is called the BK virus, and I now have a visceral aversion to all things BK. Sorry, Burger King.
My doctor's initial preference was to ride out the virus, saying, "The treatment is often worse than the condition." When the condition became intolerable, she raised the prospect of returning to the hospital for treatment. She left it up to me, but she was clearly leaning toward toward readmission, and I agreed. So, following my regular appointment on Monday (1/16), I was wheeled by a nurse from the clinic, across two streets (in enclosed walkways), and into the hospital admitting office.
The next least aggressive treatment, after riding it out, is irrigating the bladder with saline solution continuously for as many days as it takes to flush out dead and dying tissue. Irrigation works because the virus invades cells, multiplies, kills the cells, and then spreads to neighboring cells when the cells fall apart. If you flush the dead tissue, you flush the virus before it has a chance to infect more cells. Of particular concern is that the virus can get into the blood or travel into the kidneys.
Irrigation is not painless, but it is less painful than riding it out.
The first step in irrigation is having a way to get fluid into and out of the bladder, continuously. One word: catheter. It's a two-lane catheter, with half of the tube heading in and half heading out. Then it splits into two larger tubes, one coming from the saline bag hanging from an IV pole and the other running into a bag collecting the outflow.
Overall, the catheter is about the diameter of a cheap ballpoint pen, a little thinner than a standard pencil. Getting the catheter into position is a painful but thankfully quick procedure. There's a numbing, lubricating gel involved, but, in my fortunately limited experience, it only numbs and lubricates up to but not including the sphincter at the bottom of the bladder. Yeowch!
[That's today's installment of Joe vs. BK. More will dribble out — ha! — in days to come.]
Over the course of a week, I moved from it-only-hurts-when-I-breathe to it-only-hurts-when-I-laugh/sneeze/cough to it-only-hurts-when-I-pee to it-only-hurts-when-I-pee-and-I-have-to-pee-all-the-time-and-why-is-there-blood.
So, I ended up back in the hospital to treat a strongly suspected (and then confirmed) viral bladder infection. It is called the BK virus, and I now have a visceral aversion to all things BK. Sorry, Burger King.
My doctor's initial preference was to ride out the virus, saying, "The treatment is often worse than the condition." When the condition became intolerable, she raised the prospect of returning to the hospital for treatment. She left it up to me, but she was clearly leaning toward toward readmission, and I agreed. So, following my regular appointment on Monday (1/16), I was wheeled by a nurse from the clinic, across two streets (in enclosed walkways), and into the hospital admitting office.
The next least aggressive treatment, after riding it out, is irrigating the bladder with saline solution continuously for as many days as it takes to flush out dead and dying tissue. Irrigation works because the virus invades cells, multiplies, kills the cells, and then spreads to neighboring cells when the cells fall apart. If you flush the dead tissue, you flush the virus before it has a chance to infect more cells. Of particular concern is that the virus can get into the blood or travel into the kidneys.
Irrigation is not painless, but it is less painful than riding it out.
The first step in irrigation is having a way to get fluid into and out of the bladder, continuously. One word: catheter. It's a two-lane catheter, with half of the tube heading in and half heading out. Then it splits into two larger tubes, one coming from the saline bag hanging from an IV pole and the other running into a bag collecting the outflow.
Overall, the catheter is about the diameter of a cheap ballpoint pen, a little thinner than a standard pencil. Getting the catheter into position is a painful but thankfully quick procedure. There's a numbing, lubricating gel involved, but, in my fortunately limited experience, it only numbs and lubricates up to but not including the sphincter at the bottom of the bladder. Yeowch!
[That's today's installment of Joe vs. BK. More will dribble out — ha! — in days to come.]
Saturday, January 21, 2012
Another Quick Update
I know I have left people hanging by not posting more regularly, and that creates concern. You can relax.
I'll have more to say about my bladder infection and its treatment in a future (and I hope not too distant) post. It won't be for the squeamish, which might be why I'm putting off writing about it. The family-friendly summary is that I went back into the hospital on Monday, and I have progressed from almost always uncomfortable and frequently in great pain to occasionally uncomfortable and rarely in pain, and that pain is not as bad as before.
Unlike the infections I have fought through before transplant, this infection does not interfere with the overall treatment/recovery plan.
As for the recovery from transplant, that is going well. The preliminary biopsy results show no leukemia and typical quantities of various cell types at this point after a transplant, but we won't know for sure until the more accurate test results are in, either late this week or some time the week after.
I'll have more to say about my bladder infection and its treatment in a future (and I hope not too distant) post. It won't be for the squeamish, which might be why I'm putting off writing about it. The family-friendly summary is that I went back into the hospital on Monday, and I have progressed from almost always uncomfortable and frequently in great pain to occasionally uncomfortable and rarely in pain, and that pain is not as bad as before.
Unlike the infections I have fought through before transplant, this infection does not interfere with the overall treatment/recovery plan.
As for the recovery from transplant, that is going well. The preliminary biopsy results show no leukemia and typical quantities of various cell types at this point after a transplant, but we won't know for sure until the more accurate test results are in, either late this week or some time the week after.
Sunday, January 15, 2012
D+31 — It Only Hurts When I...
(I note with nostalgia that my previous D+31 posting, after the first transplant, had the title "Our Most Boring Patient." It's odd to think of that period of time as the good old days...)
So, on Monday I had the sharp stabbing pain that felt like gall bladder problem (minus the vomiting) and also like the pulmonary embolism. At times it was debilitating. I used the modified breathing technique that only uses the top third of my chest to avoid pain, but a laugh or burp or cough or sneeze, or even just turning the "wrong" way, would twist the knife hard, and even a normal breath was quite painful.
Before I saw the doctor on Monday, I saw a nurse who went over my medications and asked about any pain. I explained what was going on. She asked the "on a scale of one to 10" question. I tried to explain that it was constantly changing, ranging from four if I didn't breathe too deeply to eight or so when I did. Apparently, her computer form had room for only one number. "What's the number right now?" In the interest of honesty, I said, "four," which she dutifully typed in, mostly hiding how much pain I was in. Maybe I should have averaged the high and low.
The doppler imaging they did on my line and the chest x-ray were both negative for blood clots, so it was left as a mystery.
On Tuesday, the pain had shifted to the left side. Since an embolism can't jump from one lung to the other, this shift pretty conclusively ruled out a PE. It also ruled out various organ-related issues, most of which had already been ruled out by my normal blood chemistry. It hurt a little less than it had the day before, perhaps because of the acetaminophen I was taking. Later that day, it appeared on both sides. I began to suspect it was nothing as dramatic as a pulmonary embolism or a gall stone.
What could it be? On Monday, during my appointment with my doctor, she had asked in passing if I was constipated. I said I wasn't, because I was having small, normal bowel movements a couple of times a day. Over several days, however, small bowel movements are not that different from constipation, so I started taking something for that.
By Wednesday, the pain just below my rib cage, which continued to migrate from one side to the other, had generally subsided to the point that I could move around freely with only occasional stabs from an especially deep breath. It was a sunny day and very warm for January in Chicago — above 50 degrees — so my dad and I drove to the nearby lakefront and walked to Promontory Point, which offers a beautiful view of downtown Chicago to the north. The outing included about 45 minutes of walking, the most for me in 2012. PR!
On Thursday, the upper abdominal pain was mostly gone. I could make it hurt if I tried, and at times it came back briefly to previous levels, but I could go hours without noticing anything.
In the afternoon, I took a nap. When I woke up, I did what I had done for most of the week: see how deep a breath I could take before I felt pain. The answer was, pretty deep! Excellent. I headed to the bathroom to pee.
Whoa! That hurts.
And what's this tiny bloody thing in the toilet bowl? It's not exactly a drop of blood, which would have dispersed. It's like a tiny bright red jellyfish, about the size of a fingernail. And it came out of my... This is not right!
And why do I still feel like I need to pee, even though I just did.
I called my doctor. It's probably some kind of infection. Instructions: Keep an eye on it.
At night, I get up every hour to go the bathroom. Sometimes it burns a little, and sometimes it feels like I'm peeing tabasco sauce. Sometimes there's a little blood, and sometimes there's none that I can see, and sometimes there are what I assume are small pieces of the lining of the urinary tract.
Not much has changed in the morning. I call my doctor. "Would you like to submit a urine sample?" Hmmm. I was not expecting her to leave it up to me, but starting down the path of finding out what the problem was seemed preferable to sticking with the status quo, so she put in an order for the lab work and my dad and I headed to the clinic.
At this point, the urge to go was constant, even though my bladder was nearly empty each time. I didn't feel like I could hold out as I waited in one waiting room for lab paperwork, and then in the lab waiting room, even though I knew my bladder was close to empty since I had gone just before we left for the clinic.
...
[I am posting this now, Sunday, even though it's incomplete, because the infection I have been describing has made sitting uncomfortable, and it's hard to write lying down, and even lying down I am very uncomfortable, so I'm focused on just getting through the day, which is why I haven't worked on this post since Friday. The infection is most likely a virus, in which case there's nothing to do anyway except wait it out. I did get some encouraging blood counts on Friday: platelets went to 37 after drifting in the teens for a few weeks, WBC went to 2.5 after drifting around 1.5 for a while, and ANC went to 1.48, which is essentially normal. I get more counts tomorrow.]
So, on Monday I had the sharp stabbing pain that felt like gall bladder problem (minus the vomiting) and also like the pulmonary embolism. At times it was debilitating. I used the modified breathing technique that only uses the top third of my chest to avoid pain, but a laugh or burp or cough or sneeze, or even just turning the "wrong" way, would twist the knife hard, and even a normal breath was quite painful.
Before I saw the doctor on Monday, I saw a nurse who went over my medications and asked about any pain. I explained what was going on. She asked the "on a scale of one to 10" question. I tried to explain that it was constantly changing, ranging from four if I didn't breathe too deeply to eight or so when I did. Apparently, her computer form had room for only one number. "What's the number right now?" In the interest of honesty, I said, "four," which she dutifully typed in, mostly hiding how much pain I was in. Maybe I should have averaged the high and low.
The doppler imaging they did on my line and the chest x-ray were both negative for blood clots, so it was left as a mystery.
On Tuesday, the pain had shifted to the left side. Since an embolism can't jump from one lung to the other, this shift pretty conclusively ruled out a PE. It also ruled out various organ-related issues, most of which had already been ruled out by my normal blood chemistry. It hurt a little less than it had the day before, perhaps because of the acetaminophen I was taking. Later that day, it appeared on both sides. I began to suspect it was nothing as dramatic as a pulmonary embolism or a gall stone.
What could it be? On Monday, during my appointment with my doctor, she had asked in passing if I was constipated. I said I wasn't, because I was having small, normal bowel movements a couple of times a day. Over several days, however, small bowel movements are not that different from constipation, so I started taking something for that.
By Wednesday, the pain just below my rib cage, which continued to migrate from one side to the other, had generally subsided to the point that I could move around freely with only occasional stabs from an especially deep breath. It was a sunny day and very warm for January in Chicago — above 50 degrees — so my dad and I drove to the nearby lakefront and walked to Promontory Point, which offers a beautiful view of downtown Chicago to the north. The outing included about 45 minutes of walking, the most for me in 2012. PR!
On Thursday, the upper abdominal pain was mostly gone. I could make it hurt if I tried, and at times it came back briefly to previous levels, but I could go hours without noticing anything.
In the afternoon, I took a nap. When I woke up, I did what I had done for most of the week: see how deep a breath I could take before I felt pain. The answer was, pretty deep! Excellent. I headed to the bathroom to pee.
Whoa! That hurts.
And what's this tiny bloody thing in the toilet bowl? It's not exactly a drop of blood, which would have dispersed. It's like a tiny bright red jellyfish, about the size of a fingernail. And it came out of my... This is not right!
And why do I still feel like I need to pee, even though I just did.
I called my doctor. It's probably some kind of infection. Instructions: Keep an eye on it.
At night, I get up every hour to go the bathroom. Sometimes it burns a little, and sometimes it feels like I'm peeing tabasco sauce. Sometimes there's a little blood, and sometimes there's none that I can see, and sometimes there are what I assume are small pieces of the lining of the urinary tract.
Not much has changed in the morning. I call my doctor. "Would you like to submit a urine sample?" Hmmm. I was not expecting her to leave it up to me, but starting down the path of finding out what the problem was seemed preferable to sticking with the status quo, so she put in an order for the lab work and my dad and I headed to the clinic.
At this point, the urge to go was constant, even though my bladder was nearly empty each time. I didn't feel like I could hold out as I waited in one waiting room for lab paperwork, and then in the lab waiting room, even though I knew my bladder was close to empty since I had gone just before we left for the clinic.
...
[I am posting this now, Sunday, even though it's incomplete, because the infection I have been describing has made sitting uncomfortable, and it's hard to write lying down, and even lying down I am very uncomfortable, so I'm focused on just getting through the day, which is why I haven't worked on this post since Friday. The infection is most likely a virus, in which case there's nothing to do anyway except wait it out. I did get some encouraging blood counts on Friday: platelets went to 37 after drifting in the teens for a few weeks, WBC went to 2.5 after drifting around 1.5 for a while, and ANC went to 1.48, which is essentially normal. I get more counts tomorrow.]
Monday, January 9, 2012
D+27 — Quick Update
It was kind of a lost day, with about 5 hours of tests and appointments to start off the day, followed by some serious napping.
My blood tests show a small but not necessarily meaningful uptick in most numbers. The numbers had been drifting down, but not enough to alarm the doctors.
The big issue yesterday was that my infusion line was blocked. We think my dad and I failed to flush the line the day before, leaving some blood to clog things up. Fortunately, an IV therapist was able to open up the line today.
The big issue of today was a sharp stabbing pain at the bottom of my right ribcage, reminding me of both my gallstones and my pulmonary embolism. We still don't know what the cause is, but some over-the-counter pain relief (doctor's recommendation until she figures out what the problem is) has helped.
Next week, I have a bone marrow biopsy and an appointment with the ENT folks to check on my sinuses. As of now, those are my next visits to the clinic.
Jan was here yesterday and today, visiting me and giving my dad a break. It was a win-win-win. My dad got a break from 24/7 caregiving and went to the Blue Man Group. I got to see my amazing wife. And Jan got to help bathe her now scrawny husband, and also shepherd me through a five-hour clinic visit and watch me nap.
My blood tests show a small but not necessarily meaningful uptick in most numbers. The numbers had been drifting down, but not enough to alarm the doctors.
The big issue yesterday was that my infusion line was blocked. We think my dad and I failed to flush the line the day before, leaving some blood to clog things up. Fortunately, an IV therapist was able to open up the line today.
The big issue of today was a sharp stabbing pain at the bottom of my right ribcage, reminding me of both my gallstones and my pulmonary embolism. We still don't know what the cause is, but some over-the-counter pain relief (doctor's recommendation until she figures out what the problem is) has helped.
Next week, I have a bone marrow biopsy and an appointment with the ENT folks to check on my sinuses. As of now, those are my next visits to the clinic.
Jan was here yesterday and today, visiting me and giving my dad a break. It was a win-win-win. My dad got a break from 24/7 caregiving and went to the Blue Man Group. I got to see my amazing wife. And Jan got to help bathe her now scrawny husband, and also shepherd me through a five-hour clinic visit and watch me nap.
Thursday, January 5, 2012
D+23 — Milestones
I have reached a few milestones in the last several days.
- Yesterday, I got out of the tub unassisted. It might have been better technique, or a little more strength, or some of each.
- Yesterday, I was finally able to break my large pills in half. Again, not sure about the mix of technique and strength involved, but it makes me feel good to be able to do it myself.
- Yesterday, I had my first squares of chocolate (Trader Joe's Bittersweet Chocolate with Almonds) in a long time. It has been a while since chocolate in this form appealed to me, and chocolate is one of my favorite food groups, so this is a big step. Chocolate, especially with nuts, is also a great and compact source of fat and calories, which I am currently trying to maximize.
- Today, I walked in the neighborhood for the first time, for 25 minutes. My dad and I discovered several interesting takeout options.
Tomorrow, I have lab tests and an appointment with a nurse practitioner for a check-up. In roughly a week, I have my next bone marrow biopsy.
Monday, January 2, 2012
D+20 — Settling In
We're finishing our third day in the apartment. It's going about as well as it can.
Yesterday, I went to the hospital for blood tests and possible transfusions, as ordered by the person in charge of discharging me. Surprisingly, to us, the hospital was not expecting me, and we had to wait about 40 minutes in Admitting for a doctor to put in an order. The woman in the admitting office who was serving us told us that what we should have done was call ahead to find out if there was a room available and to set in motion the process of getting an order. This would have been useful information to have upon discharge. We were not alone in our circumstances, as two other patients showed up while we waited in Admitting and found themselves in the same unexpected position.
Luckily, I didn't need any platelets or red blood cells, which is good both because we got to leave within an hour of the blood draw and because it means the marrow is producing enough of those cells to keep me above the danger line for those two types of cells. The WBC has been drifting down since its high of 3.1 (3100), but nobody medical seems concerned as long as there are enough neutrophils to fight infection, and there's still a good cushion there.
A friend of ours drove up from Champaign for a very brief visit while we in the hospital and also brought a few household supplies from our house: cutting board, lemon squeezer, drying rack... items you don't always find in a "fully furnished" apartment. We keep discovering more things that are lacking, some of which really should be provided — pot holders, lids for pots — and others that we just would like to have — space heater, baking sheet.
After the hospital visit, my home care nurse came and gave me a magnesium infusion.
Today, I went for a couple of 15-minute walks... inside the apartment. It was a little slippery outside, and very cold.
My doctor, back from her two-week vacation, called to see how I was doing (on a holiday — she's really good). Mostly, I feel like I am 90 years old. I walk very slowly, and I am often tired. She was not surprised, given all that has happened to me since the leukemia returned.
One useful piece of information we learned from her was that, while it could be less or it could be more, I should plan to be in Chicago for a couple of months. This is going to take some planning, since Jan cannot be up here the whole time. We are lucky that my parents are retired and able to come out for lengthy caretaking trips.
Yesterday, I went to the hospital for blood tests and possible transfusions, as ordered by the person in charge of discharging me. Surprisingly, to us, the hospital was not expecting me, and we had to wait about 40 minutes in Admitting for a doctor to put in an order. The woman in the admitting office who was serving us told us that what we should have done was call ahead to find out if there was a room available and to set in motion the process of getting an order. This would have been useful information to have upon discharge. We were not alone in our circumstances, as two other patients showed up while we waited in Admitting and found themselves in the same unexpected position.
Luckily, I didn't need any platelets or red blood cells, which is good both because we got to leave within an hour of the blood draw and because it means the marrow is producing enough of those cells to keep me above the danger line for those two types of cells. The WBC has been drifting down since its high of 3.1 (3100), but nobody medical seems concerned as long as there are enough neutrophils to fight infection, and there's still a good cushion there.
A friend of ours drove up from Champaign for a very brief visit while we in the hospital and also brought a few household supplies from our house: cutting board, lemon squeezer, drying rack... items you don't always find in a "fully furnished" apartment. We keep discovering more things that are lacking, some of which really should be provided — pot holders, lids for pots — and others that we just would like to have — space heater, baking sheet.
After the hospital visit, my home care nurse came and gave me a magnesium infusion.
Today, I went for a couple of 15-minute walks... inside the apartment. It was a little slippery outside, and very cold.
My doctor, back from her two-week vacation, called to see how I was doing (on a holiday — she's really good). Mostly, I feel like I am 90 years old. I walk very slowly, and I am often tired. She was not surprised, given all that has happened to me since the leukemia returned.
One useful piece of information we learned from her was that, while it could be less or it could be more, I should plan to be in Chicago for a couple of months. This is going to take some planning, since Jan cannot be up here the whole time. We are lucky that my parents are retired and able to come out for lengthy caretaking trips.
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