I had been both dreading and looking forward the last day of this round of chemo. The cold hand and foot treatment is no fun, but Friday would be the last one.
I was all set. I had the next Frasier DVD in the player. I was mentally prepared for the two hours of chilling. Once I'm iced-in, I'm stuck in bed with my DVD controller and my little handheld urinal.
As soon as the drip started, I knew something was wrong. On Thursday, I had been watching disc 1 of Season 2 of Frasier, and Niles was barely repressing his infatuation with Daphne. Suddenly, they appeared to be a couple, with Daphne pregnant. Was it a dream sequence?
Then it came to me. When Jan and I had earlier been looking through the DVDs, we noticed that one of the box sets had two Disc Twos, and one of the extras was a different color. Possessing between us only two Ivy League bachelor's degrees and two U of I master's degrees, we just figured it was a mystery. If only we had had a kindergartner with us to suggest that the red disc belonged in the red box.
So, I was stuck many seasons in the future from where I had left off the day before. And since that was the worst thing that happened to me all day, it was a pretty good day.
Sunday, November 27, 2011
Saturday, November 26, 2011
Andy Borowitz
From a comic master, Andy Borowitz, on the way medical strife can lead to a deeper gratitude:
http://www.youtube.com/watch?feature=player_embedded&v=4mvhjZ-ClLw
A 21st Century Thanksgiving DInner
Jan, Jake, and Paul came up to Chicago Wednesday evening, staying over for Thanksgiving. Jake flew in from Philadelphia. As noted earlier, Jake got off the plane with a runny nose and a cough, putting him on the corridor's Do Not Enter list. But we made the best of it.
The dining hall mac and cheese arrived shortly before Jan with the Boston Market bag. I couldn't tell the difference between the special Thanksgiving version and the usual awful stuff. Then again, not much tastes very good to me these days, so I'm not the best judge.
By 4:00, when Jan got to Boston Market, most of the sides we wanted were gone. The remainders were OK, but I really missed the cranberry-walnut relish we had seen on the menu.
We had our meal, chatted with Jake in exile, and later in the evening they all headed down to Champaign for the weekend. Jan is coming back up on Sunday for the day, after taking Jake to the airport.
A little later, my night nurse came in with good news — the nurses had a few extra pieces of sweet potato pie and were offering them to patients. Sure, I'd love one.
It was awful.
But the Thanksgiving dinner was basically as good as it could be, under the circumstances.
Staff from food service, who stop by for a quality check at least once a day and sometimes three times a day, had highly recommended the dining service's macaroni and cheese and the sweet potato pie, special for Thanksgiving. I was skeptical about the macaroni and cheese, since I had ordered it before, but she assured me that they made it the real way for Thanksgiving. So, I ordered the mac and cheese (take that, Pat Robertson) and the sweet potato pie, to supplement what my family was bringing from Boston Market. The dining hall had the mac and cheese, but they were out of pie.
Jake in exile in the Au Bon Pain five floors below.
Video chatting with Jake over lean pickings from Boston Market.
Paul and Jan show off their Yellow-Bellied Sneetches costumes.
The dining hall mac and cheese arrived shortly before Jan with the Boston Market bag. I couldn't tell the difference between the special Thanksgiving version and the usual awful stuff. Then again, not much tastes very good to me these days, so I'm not the best judge.
By 4:00, when Jan got to Boston Market, most of the sides we wanted were gone. The remainders were OK, but I really missed the cranberry-walnut relish we had seen on the menu.
We had our meal, chatted with Jake in exile, and later in the evening they all headed down to Champaign for the weekend. Jan is coming back up on Sunday for the day, after taking Jake to the airport.
A little later, my night nurse came in with good news — the nurses had a few extra pieces of sweet potato pie and were offering them to patients. Sure, I'd love one.
It was awful.
But the Thanksgiving dinner was basically as good as it could be, under the circumstances.
Wednesday, November 23, 2011
Coolest Mani/Pedi Ever
I have finished three of the five days of chemo treatment. Each dose takes two hours.
The first time someone talked to me about the side effects of clofarabine, I was told there usually weren't any.
A few hours before my first dose, I receive the standard patient information sheet, which lists the same side effects I have seen on all the other chemo info sheets: chance of infection, feeling dizzy, feeling tired or week, nausea or vomiting, loose stools, skin irritation, headache, mouth irritation, anemia. I think these are all symptoms brought on by the severe drop in blood counts, not direct side effects of the medication, which is why they appear on every info sheet. Anyway, I'm feeling pretty comfortable about the whole thing, because I have tolerated the chemo treatments before relatively well, except for infections, and I'm already as vulnerable to infection as I can get.
Shortly before my first dose, the nurse comes in and asks, "So, did they tell you about the cold packs?"
No, they did not.
An until-now unmentioned side effect of this medication is Foot and Hand Disorder, in which the chemical wreaks havoc on the soles of the feet and the palms of the hand, causing massive blisters. Some studies have indicated that keeping these areas very cold while administering the chemo reduces the incidence of this problem by reducing circulation. Massive blisters on my palms and soles would definitely cramp my style, so I'm up for the cryotherapy.
On the first night of this round of chemo (Monday), the nurse wraps my feet (tops and bottoms) with chemical cold packs, and hands me two more, one for each hand. My job is to let the nurse know when they aren't cold anymore, so we can switch for new packs. I'm a little concerned, because I no longer have full feeling in my feet — a result of past chemo — and I wonder whether I will be able to tell if the packs are too cold. It turns out I can still feel cold just fine.
Anyway, the first round goes pretty well. About every half hour I decide the cold packs aren't cold enough, and two to ten minutes later the nurse comes in and replaces them. (One of the delays was because they didn't have enough cold packs on the floor.) With my feet bound in cold packs, I get to use a handheld urinal while sitting in bed. Tricky, but I've had practice.
On Tuesday, I have a different nurse. She asks how it went the first time, and I tell her it wasn't bad at all, and she starts gathering supplies: cold packs, gauze wrap to fasten packs to my feet. She gives me a couple of activated cold packs to hold while she leaves to get something else. She comes back with six small bags of ice.
"Those cold packs just are not very cold. I was talking to some of the other nurses, and I think we should try ice bags. Or, to make your hands colder, we could get a tub of ice and you could bury your hands in it."
"For two hours?"
"Yes."
"Ice bags will be fine."
So, my nurse straps an ice bag to each sole, and hands me two ice bags to hold.
"See? These are much colder."
Yes, they are.
I have a DVD of "Frasier" loaded up, so I'm ready to go. The ice bags are colder, but I get through the two hours with help from the episodes; a call from my niece Isabel; and another call from my parents, brother Karl, sister-in-law Kate, and their sons Ben and Garrett. Kate and Karl are visiting my parents from upstate New York for Thanksgiving. Jan and the boys are coming up Wednesday into Thursday for our own version of Thanksgiving.
My feet hurt as they warm up, my palms are bright pink, as I suspect my soles are. It's been a very special spa treatment, as designed by the White Witch of Narnia.
Day three of chemo is Wednesday. We have been moving the time up two hours each day, since 8:00 p.m. is not a great time to start chemo. By today, we're starting at 4:00; it ends up being 4:10 before the pump actually starts. I'm pretty locked in to being done at 6:10.
At 5:10, I text Jan that I have an hour to go. A little later, I request new ice bags, since the ones in my hands are more water than ice. "You call this cold? Bring me more ice!" I'm hoping I don't need to change the ones on my feet, since they're feeling OK, but no such luck. One of the pumps starts beeping, and my nurse spends some time getting it to shut up. I'm watching "Frasier."
At 5:40, I text that I have half an hour to go. She is picking up Jake at the Bloomington airport and then driving up here with the boys.
5:55, 15 minutes to go.
6:05, 5 minutes to go.
6:10,... no pump alarm.
6:15,... no pump alarm. I call for my nurse. "Can he bring you anything?" "No, I just have a question."
I ask my nurse how much time I have left. "About 15 more minutes... that trouble with the pump slowed things down."
Aargh. I can do 15 more.
Fifteen minutes later, my nurse comes in to do a flush. "Can I take off the ice bags now?"
No. My nurse wants to wait until the flush is done, another 5 minutes.
Lucky me. A bonus 25 minutes of the spa treatment, at no extra charge, thanks to the merciless minion of the White Witch who is pretending to be my nurse. If I had known, I could watched one more episode.
Checking in with Jan and the boys, I learn that Jake has a runny nose. This means he cannot visit — a big disappointment, since visiting was the main reason he flew out from Philadelphia for the holiday.
I need to pee. I don't see my urinal, so I assume my nurse took it away when he released me from my ice bags. I head to my bathroom on numbed soles, which feels really weird, like somebody taped blocks of wood to the bottoms of my feet. On my way back to bed, I see my bedside urinal is still there. Oh well. I get into bed and take a nap.
On the bright side: Three down, two to go.
Also, first day without the gauze mustache, because my sinuses have (mostly) stopped draining bloody mucus. I am enjoying immensely something I do not recommend to anyone: breathing through one's nose for the first time in three weeks.
The first time someone talked to me about the side effects of clofarabine, I was told there usually weren't any.
A few hours before my first dose, I receive the standard patient information sheet, which lists the same side effects I have seen on all the other chemo info sheets: chance of infection, feeling dizzy, feeling tired or week, nausea or vomiting, loose stools, skin irritation, headache, mouth irritation, anemia. I think these are all symptoms brought on by the severe drop in blood counts, not direct side effects of the medication, which is why they appear on every info sheet. Anyway, I'm feeling pretty comfortable about the whole thing, because I have tolerated the chemo treatments before relatively well, except for infections, and I'm already as vulnerable to infection as I can get.
Shortly before my first dose, the nurse comes in and asks, "So, did they tell you about the cold packs?"
No, they did not.
An until-now unmentioned side effect of this medication is Foot and Hand Disorder, in which the chemical wreaks havoc on the soles of the feet and the palms of the hand, causing massive blisters. Some studies have indicated that keeping these areas very cold while administering the chemo reduces the incidence of this problem by reducing circulation. Massive blisters on my palms and soles would definitely cramp my style, so I'm up for the cryotherapy.
On the first night of this round of chemo (Monday), the nurse wraps my feet (tops and bottoms) with chemical cold packs, and hands me two more, one for each hand. My job is to let the nurse know when they aren't cold anymore, so we can switch for new packs. I'm a little concerned, because I no longer have full feeling in my feet — a result of past chemo — and I wonder whether I will be able to tell if the packs are too cold. It turns out I can still feel cold just fine.
Anyway, the first round goes pretty well. About every half hour I decide the cold packs aren't cold enough, and two to ten minutes later the nurse comes in and replaces them. (One of the delays was because they didn't have enough cold packs on the floor.) With my feet bound in cold packs, I get to use a handheld urinal while sitting in bed. Tricky, but I've had practice.
On Tuesday, I have a different nurse. She asks how it went the first time, and I tell her it wasn't bad at all, and she starts gathering supplies: cold packs, gauze wrap to fasten packs to my feet. She gives me a couple of activated cold packs to hold while she leaves to get something else. She comes back with six small bags of ice.
"Those cold packs just are not very cold. I was talking to some of the other nurses, and I think we should try ice bags. Or, to make your hands colder, we could get a tub of ice and you could bury your hands in it."
"For two hours?"
"Yes."
"Ice bags will be fine."
So, my nurse straps an ice bag to each sole, and hands me two ice bags to hold.
"See? These are much colder."
Yes, they are.
I have a DVD of "Frasier" loaded up, so I'm ready to go. The ice bags are colder, but I get through the two hours with help from the episodes; a call from my niece Isabel; and another call from my parents, brother Karl, sister-in-law Kate, and their sons Ben and Garrett. Kate and Karl are visiting my parents from upstate New York for Thanksgiving. Jan and the boys are coming up Wednesday into Thursday for our own version of Thanksgiving.
My feet hurt as they warm up, my palms are bright pink, as I suspect my soles are. It's been a very special spa treatment, as designed by the White Witch of Narnia.
Day three of chemo is Wednesday. We have been moving the time up two hours each day, since 8:00 p.m. is not a great time to start chemo. By today, we're starting at 4:00; it ends up being 4:10 before the pump actually starts. I'm pretty locked in to being done at 6:10.
At 5:10, I text Jan that I have an hour to go. A little later, I request new ice bags, since the ones in my hands are more water than ice. "You call this cold? Bring me more ice!" I'm hoping I don't need to change the ones on my feet, since they're feeling OK, but no such luck. One of the pumps starts beeping, and my nurse spends some time getting it to shut up. I'm watching "Frasier."
At 5:40, I text that I have half an hour to go. She is picking up Jake at the Bloomington airport and then driving up here with the boys.
5:55, 15 minutes to go.
6:05, 5 minutes to go.
6:10,... no pump alarm.
6:15,... no pump alarm. I call for my nurse. "Can he bring you anything?" "No, I just have a question."
I ask my nurse how much time I have left. "About 15 more minutes... that trouble with the pump slowed things down."
Aargh. I can do 15 more.
Fifteen minutes later, my nurse comes in to do a flush. "Can I take off the ice bags now?"
No. My nurse wants to wait until the flush is done, another 5 minutes.
Lucky me. A bonus 25 minutes of the spa treatment, at no extra charge, thanks to the merciless minion of the White Witch who is pretending to be my nurse. If I had known, I could watched one more episode.
Checking in with Jan and the boys, I learn that Jake has a runny nose. This means he cannot visit — a big disappointment, since visiting was the main reason he flew out from Philadelphia for the holiday.
I need to pee. I don't see my urinal, so I assume my nurse took it away when he released me from my ice bags. I head to my bathroom on numbed soles, which feels really weird, like somebody taped blocks of wood to the bottoms of my feet. On my way back to bed, I see my bedside urinal is still there. Oh well. I get into bed and take a nap.
On the bright side: Three down, two to go.
Also, first day without the gauze mustache, because my sinuses have (mostly) stopped draining bloody mucus. I am enjoying immensely something I do not recommend to anyone: breathing through one's nose for the first time in three weeks.
Monday, November 21, 2011
Onward!
I had my first shower in a few days, including my first shampoo since my initial sinus surgery. Showers are currently quite tricky. I have to find a window of time when I am not receiving something through my lines. We have to wrap the PICC line in plastic and cover the site from which the Hickman was removed. (I can't see it, but everyone who looks at the infected Hickman site says it looks terrible.) And I have a mustache of gauze under my nose. I was so preoccupied with keeping various dressings dry and keeping the gauze mustache in place with one hand while dispensing and applying shampoo with the other hand that I was halfway through my shower before I realized I still had my glasses on.
I just heard that my chemo (clofarabine) is starting today. That's good! This means I have navigated not only the infection challenge but also the scheduling challenge of aligning treatment dates with biopsy dates, transplant dates, and the schedules of other transplant patients. I'm not the only patient preparing for a transplant, some key staff do not work on weekends, and there are limits to how many patients can be processed on a given day. Anyway, it's working out.
So, starting today, five days of chemo, seven days of recovery, biopsy... then, with the right biopsy results, more chemo, and then a transplant. Last Tuesday, when we learned that the leukemia had survived the October chemo treatment, was a rough day. Since then, everything has broken the right way.
Perhaps this turn of fortune is due to the flood of support coming my way. Cards and emails (often with humorous links — gotta keep laughing) and positive thoughts and prayers from all over, a complete set of "Frasier" episodes, work parties and meals at my house...
The most unexpected support, and almost certainly the largest in terms of the number of prayers, comes from the Swat Valley in Pakistan. If that location sounds familiar to you, it's most likely because the Swat Valley is the site of frequent U.S. drone attacks against suspected Taliban. It's also the home of a woman who is part of an English conversation group that my mother hosts for immigrants. So, five times a day, this woman's very large extended family prays to Allah for my health. (This gives me prayer coverage in all three Abrahamic religions.)
As a friend from high school commented recently, even a narrow path can get you where you need to go. Onward!
Saturday, November 19, 2011
Step by Step
I am successfully navigating the current path, getting infections under control before the leukemia gets out of control.
I have been running low-grade fevers every few days, which the infectious disease team has decided are not important. The ID team also suspected a surface infection of my Hickman triple lumen (the port into my chest for putting in stuff and taking our blood samples) as the source of the fevers. Yesterday, I got a PICC (peripherally inserted central catheter) line into my arm, which allowed the removal of the Hickman. So far, no fevers since the Hickman came out.
This morning, ENT removed splints and packing from my nose. It sounded worse than it turned out to be. I still can't breathe through my nose, because the nasal passages are blocked with clotted blood and some stuff they put in there to encourage clotting, but I'm getting closer. I still wear a gauze mustache to catch bloody drainage out the front. Several times a day, I now spray saline solution into my nostrils to help break up the crud in there. I also got a great tip from the ENT folks which is going to save me a small amount of grief as long as I'm wearing the gauze mustache. Instead of taping the gauze under my nose —which leads to repeated removal of tape from my face, which hurts — the ENT folks just use a folded face mask that hooks over the ears. I wish they had passed that tip along nine days ago, but better late than never.
Here is the current treatment plan, subject to change (as always):
My dad was visiting the last couple of days. He is down in Champaign now, doing a few home maintenance tasks and providing an adult presence while Jan is up visiting me for the weekend.
I have been running low-grade fevers every few days, which the infectious disease team has decided are not important. The ID team also suspected a surface infection of my Hickman triple lumen (the port into my chest for putting in stuff and taking our blood samples) as the source of the fevers. Yesterday, I got a PICC (peripherally inserted central catheter) line into my arm, which allowed the removal of the Hickman. So far, no fevers since the Hickman came out.
The fungus is no longer considered an issue. Fungal infections take a long time to be completely eradicated, especially with a weak immune system. But there is no sign of an active infection.
Here is the current treatment plan, subject to change (as always):
- Continue to have a quiet (infection-free) weekend, and maybe Monday and Tuesday, too.
- Start another round of chemotherapy, using a different class of chemicals than we have tried before. Instead of induction chemotherapy, which is what we did in October, this will be a bridge chemotherapy, used to buy time after one chemo treatment in preparation for transplant.
- Twelve days after that chemo starts, do a biopsy. Again, we need to see barely any leukemia at that point.
- If we don't see what we want to not see, do a conditioning round of chemotherapy (clear out the marrow) and then do a transplant.
My dad was visiting the last couple of days. He is down in Champaign now, doing a few home maintenance tasks and providing an adult presence while Jan is up visiting me for the weekend.
Thursday, November 17, 2011
Looks Like Clear Sailing Through the Sinus Passages
The return trip to my sinus passages yesterday has so far yielded positive results in the most important ways. I went down at 3:00 p.m. for my 2:00 p.m. procedure, which started around 5:00 p.m. A kind secretary brought me a phone so that I could call Jan and let her know about the delay, so that she didn't get concerned that my procedure had turned into something much more involved than we were anticipating.
The surgeons did not see any more fungus. They took additional samples, to make sure. The initial tests on those samples came back negative. They still need to wait a few days for a final verdict, but so far, so good. I think the packing stays in for that same period of time.
Because they took more samples, my nose is still packed with internal splints and other stuff. There is less packing than before, and there is less drainage both out my nostrils and down the back of my throat. (More small victories.) I still have to breathe through my mouth, which quickly gets intensely dry. Last night, each time I woke up, my mouth and lips were so dry that I could not close my lips around a straw or the lip of a cup. I had open my mouth, pour a little water in, and then swish it around to moisten the tissues enough that my mouth would actually function.
I have a breathing mask that supposedly provides more humid air. I have been using it for the last several days, and it seemed to be helpful. For some reason, it isn't helping with the current mouth dryness. Sipping water does help, but that technique is incompatible with sleep.
Some time today, I am going to get a new line for medications and transfusions. The one going into my chest is infected and needs to come out. So far, based on tests and the relative lack of fevers, that infection appears to be contained on the surface of my skin.
Never a dull moment! I want some dull moments.
The surgeons did not see any more fungus. They took additional samples, to make sure. The initial tests on those samples came back negative. They still need to wait a few days for a final verdict, but so far, so good. I think the packing stays in for that same period of time.
Because they took more samples, my nose is still packed with internal splints and other stuff. There is less packing than before, and there is less drainage both out my nostrils and down the back of my throat. (More small victories.) I still have to breathe through my mouth, which quickly gets intensely dry. Last night, each time I woke up, my mouth and lips were so dry that I could not close my lips around a straw or the lip of a cup. I had open my mouth, pour a little water in, and then swish it around to moisten the tissues enough that my mouth would actually function.
I have a breathing mask that supposedly provides more humid air. I have been using it for the last several days, and it seemed to be helpful. For some reason, it isn't helping with the current mouth dryness. Sipping water does help, but that technique is incompatible with sleep.
Some time today, I am going to get a new line for medications and transfusions. The one going into my chest is infected and needs to come out. So far, based on tests and the relative lack of fevers, that infection appears to be contained on the surface of my skin.
Never a dull moment! I want some dull moments.
Tuesday, November 15, 2011
A Narrowing Path
The biopsy results are in, and the leukemia survives. Ideally, we would start treating the leukemia immediately with something new.
In the less-than-ideal world I'm living in, we can't do that. Complicating matters is the fungal infection that the surgeons think they were able to cut out of my sinuses six days ago. The thing about infections is that they are hard to totally remove physically, which is why I am still being flooded with antifungals.
This means we are trying to pick our way through a tricky and narrowing path.
Even though I barely have an immune system, I do have a trace of one, and it is presumably fighting any infection I might have, including any residual fungal infection. If there is any infection lurking, attacking the leukemia would wipe out what little immune system I have and unleash infections.
So, we will be monitoring me for signs of infection, beginning tomorrow when the ENT surgeons revisit my sinuses. In keeping with the tone of the day, I learned about this plan in a less-than-ideal way. Someone from anesthesiology stopped by my room early in the afternoon to talk about her role in the upcoming surgery that nobody had yet discussed with me.
Ideally — and I feel like I'm due some news from the ideal column — they don't see anything bad and they are able to remove the packing and other stuff that has stuffed up there for the last six days. Then the oncology team and the infectious disease team weigh the confidence in there being no infection against the risk of leukemia getting out of hand. At some point, and this is what passes for ideal these days, I get another round of chemotherapy, I think in preparation for transplant.
The negative result is that they see more fungus and have to do more surgery, which means I'm further from being able to treat the leukemia, which would give the leukemia more time to grow and cause trouble.
My doctor was pretty somber when delivering the news. It felt like a transition from the odds being with me to the odds being against me. For all I know, that transition happened a while ago, but this is the first time I felt it.
Odds are about populations and probabilities. My case is about me. I feel healthy and hopeful, taking the next step, and then the one after that.
In the less-than-ideal world I'm living in, we can't do that. Complicating matters is the fungal infection that the surgeons think they were able to cut out of my sinuses six days ago. The thing about infections is that they are hard to totally remove physically, which is why I am still being flooded with antifungals.
This means we are trying to pick our way through a tricky and narrowing path.
Even though I barely have an immune system, I do have a trace of one, and it is presumably fighting any infection I might have, including any residual fungal infection. If there is any infection lurking, attacking the leukemia would wipe out what little immune system I have and unleash infections.
So, we will be monitoring me for signs of infection, beginning tomorrow when the ENT surgeons revisit my sinuses. In keeping with the tone of the day, I learned about this plan in a less-than-ideal way. Someone from anesthesiology stopped by my room early in the afternoon to talk about her role in the upcoming surgery that nobody had yet discussed with me.
Ideally — and I feel like I'm due some news from the ideal column — they don't see anything bad and they are able to remove the packing and other stuff that has stuffed up there for the last six days. Then the oncology team and the infectious disease team weigh the confidence in there being no infection against the risk of leukemia getting out of hand. At some point, and this is what passes for ideal these days, I get another round of chemotherapy, I think in preparation for transplant.
The negative result is that they see more fungus and have to do more surgery, which means I'm further from being able to treat the leukemia, which would give the leukemia more time to grow and cause trouble.
My doctor was pretty somber when delivering the news. It felt like a transition from the odds being with me to the odds being against me. For all I know, that transition happened a while ago, but this is the first time I felt it.
Odds are about populations and probabilities. My case is about me. I feel healthy and hopeful, taking the next step, and then the one after that.
I Know an Old Lady Who Swallowed a Fly
To treat the fungus they routed out of my nose as last Wednesday turned into Thursday, I am taking a couple of antifungal medications. At least one of them works by poking holes in the fungal cell walls.
Unfortunately, a side effect is that it also does the same thing to some cells in the kidney, causing me to shed potassium.
To treat the loss of potassium, I am taking a lot of intravenous potassium and also a diuretic that helps the body hang on to potassium.
Unfortunately, a potential side effect of the diuretic is that it could cause me to develop breasts.
I'm not sure what they'll give me to treat that side effect, but I'm sure it will have its own interesting side effects.
On the other hand, having breasts would open up some new career options: bearded lady, drag queen.
= = =
I am now in my sixth day of having my nose packed with stuff, which means sleep remains difficult to come by. Sunday night, I got an Ambien, and that helped. I still had to wake up every hour to pee, because I'm having drugs dripped into me all the time, plus liquids to make me pee. My nose is still bleeding, and I'm still hacking up bloody mucus, both of which are disgusting, but still better than peeing blood, which I have not done for a while. Hooray for small victories!
Last night, I was ready for my Ambien again. However, I had a fever, which meant more tests, including a chest x-ray, so they didn't want to give me a sleeping pill until after the x-ray. Which didn't happen until 4:00 a.m., due to emergencies that took priority. While it was disappointing to have my night ruined even more than usual, I'd rather be the non-emergency patient.
I did not pass out during the x-ray — another small victory. Sort of. I cheated by taking the x-ray while sitting on a stool.
Later today I should get a lot of information: biopsy results and a treatment plan. Until then, I just try to catch up on sleep.
Unfortunately, a side effect is that it also does the same thing to some cells in the kidney, causing me to shed potassium.
To treat the loss of potassium, I am taking a lot of intravenous potassium and also a diuretic that helps the body hang on to potassium.
Unfortunately, a potential side effect of the diuretic is that it could cause me to develop breasts.
I'm not sure what they'll give me to treat that side effect, but I'm sure it will have its own interesting side effects.
On the other hand, having breasts would open up some new career options: bearded lady, drag queen.
= = =
I am now in my sixth day of having my nose packed with stuff, which means sleep remains difficult to come by. Sunday night, I got an Ambien, and that helped. I still had to wake up every hour to pee, because I'm having drugs dripped into me all the time, plus liquids to make me pee. My nose is still bleeding, and I'm still hacking up bloody mucus, both of which are disgusting, but still better than peeing blood, which I have not done for a while. Hooray for small victories!
Last night, I was ready for my Ambien again. However, I had a fever, which meant more tests, including a chest x-ray, so they didn't want to give me a sleeping pill until after the x-ray. Which didn't happen until 4:00 a.m., due to emergencies that took priority. While it was disappointing to have my night ruined even more than usual, I'd rather be the non-emergency patient.
I did not pass out during the x-ray — another small victory. Sort of. I cheated by taking the x-ray while sitting on a stool.
Later today I should get a lot of information: biopsy results and a treatment plan. Until then, I just try to catch up on sleep.
Saturday, November 12, 2011
More to Say Than Energy to Say it
Wednesday was great until late in the afternoon. Then it all turned very dark very quickly.
In an extremely uncreative reprise of the original movie, the ENT (ears nose throat) people made increasingly concerned and invasive and painful visits to my room until they were wheeling me down for emergency surgery at 10 at night. It was sinus surgery this time instead of oral surgery, but otherwise completely derivative.
I've been recovering since, which involves listening to the radio and dozing off in 20- and 30-minute intervals. My sinuses are packed with gauze, and they are still bleeding, which makes it nearly impossible to sleep. Today we have figured out a way to breathe more humid air that has made it slightly easier to sleep.
Had a bone marrow biopsy Friday. Results Monday or Tuesday.
Jan's visiting this weekend. My dad is coming later this week.
More later when I perk up.
In an extremely uncreative reprise of the original movie, the ENT (ears nose throat) people made increasingly concerned and invasive and painful visits to my room until they were wheeling me down for emergency surgery at 10 at night. It was sinus surgery this time instead of oral surgery, but otherwise completely derivative.
I've been recovering since, which involves listening to the radio and dozing off in 20- and 30-minute intervals. My sinuses are packed with gauze, and they are still bleeding, which makes it nearly impossible to sleep. Today we have figured out a way to breathe more humid air that has made it slightly easier to sleep.
Had a bone marrow biopsy Friday. Results Monday or Tuesday.
Jan's visiting this weekend. My dad is coming later this week.
More later when I perk up.
Second Harvest
Tuesday is the second day of collection. We don't really know what to expect.
A doctor comes in and tells me they collected 2.6 million cells today! That gives us a total of 3.7 million, which is well on the way to 5 million. Very exciting. Wednesday's collection seems likely to top us off at 5 million.
Also exciting is the first citing of a neutrophil. Note the use of the singular form. This corresponds to an absolute neutrophil count (ANC) of 10. I don't actually get that excited, since I remember my ANC bouncing between 0 and 50 during my hospital stay in September. But 10 is definitely not zero, and maybe tomorrow we'll see more growth.
On Wednesday morning, Mara calls me with two pieces of news. They didn't get 3.7 million cells after all, they only have 3 million. (There is a preliminary count, which was too high, and a final count.) The second piece of news is that they aren't going to collect any more. Mara's platelets have dropped by half each time, leaving her in the 40s on Wednesday morning. So they decide to stop collecting. 3 million is enough, and they don't want to harm her.
So, three million it is.
A doctor comes in and tells me they collected 2.6 million cells today! That gives us a total of 3.7 million, which is well on the way to 5 million. Very exciting. Wednesday's collection seems likely to top us off at 5 million.
Also exciting is the first citing of a neutrophil. Note the use of the singular form. This corresponds to an absolute neutrophil count (ANC) of 10. I don't actually get that excited, since I remember my ANC bouncing between 0 and 50 during my hospital stay in September. But 10 is definitely not zero, and maybe tomorrow we'll see more growth.
On Wednesday morning, Mara calls me with two pieces of news. They didn't get 3.7 million cells after all, they only have 3 million. (There is a preliminary count, which was too high, and a final count.) The second piece of news is that they aren't going to collect any more. Mara's platelets have dropped by half each time, leaving her in the 40s on Wednesday morning. So they decide to stop collecting. 3 million is enough, and they don't want to harm her.
So, three million it is.
Tuesday, November 8, 2011
First Harvest — 1.1 Million
(Later on Monday)
Monday is Mara's first collection day.
There had been talk of using a femoral vein instead of her arm, since there is some thought we didn't get the optimal number of stem cells in the winter because her veins were not cooperative. However, they went with the arm again today. They had no problem getting the volume of blood they wanted, but there were not as many stem cells as they hoped for.
They collected 1.1 million today. I thought this was pretty good, since I remember 2 million being the target in the winter. We only got 1.7 million back then, but the doctors decided to proceed anyway. It turns out 2 million is the minimal amount they like to transplant. The real target is 5 million.
Mara came over to my room around dinnertime, bringing with her some excellent coffee ice cream. I'm gradually adding foods to what I feel like eating, and coffee ice cream is definitely on the list.
Monday is Mara's first collection day.
There had been talk of using a femoral vein instead of her arm, since there is some thought we didn't get the optimal number of stem cells in the winter because her veins were not cooperative. However, they went with the arm again today. They had no problem getting the volume of blood they wanted, but there were not as many stem cells as they hoped for.
They collected 1.1 million today. I thought this was pretty good, since I remember 2 million being the target in the winter. We only got 1.7 million back then, but the doctors decided to proceed anyway. It turns out 2 million is the minimal amount they like to transplant. The real target is 5 million.
Mara came over to my room around dinnertime, bringing with her some excellent coffee ice cream. I'm gradually adding foods to what I feel like eating, and coffee ice cream is definitely on the list.
Things That Go Bump in the Night
(Monday)
I had been running a mild fever in the evening for a few days, but not high enough to warrant any action. On Sunday evening, my fever reaches the magic threshold —38 Centigrade.
This means tests, throughout the night. They don't take any chances with fevers.
Around 1:00 a.m., Transport arrives to take me down for chest x-rays, to look for pneumonia. He wheels me to the elevator, down to the scanning floor, through a maze of turns and doors to the x-ray waiting area, which is empty. I am feeling pretty weak, and I am just about to get out of my chair and lie down on a couch when the tech comes in for me. As we're rolling down the hall, I feel a little flushed.
He takes me into the x-ray room and has me stand up with my chest against whatever it is they shoot us against. I'm tired. He aligns me and the background the way he wants, and steps out of the room into the control room. A voice tells me to breathe in and hold it, and then to breathe normally. I'm feeling lightheaded. I say out loud, "I'm feeling lightheaded."
The next thing I know, I am regaining consciousness in the wheelchair. I'm sweating and disoriented. The x-ray tech is next to me and tells me I was out for two minutes. (None of the doctors or nurses I later tell this to believe the two-minute estimate, chalking it up to the natural tendency to overestimate the duration of scary or unpleasant events.) The tech brings me a wet hand towel to cool me off, and somebody calls for the nurse from my corridor to come down.
By the time the nurse arrives, I feel fine. She gets into protective garb — why am I not in protective garb? — and stands next to me while we take the x-ray. And then she wheels me back to my room.
There's no obvious explanation for me passing out. My blood pressure is OK. I have only a light fever. I do sometimes get lightheaded when I stand up after sitting for a while, but in this case I had been standing for a while before all the blood suddenly rushed away from my brain. I had a nearly identical experience my first day back, during a CT scan of my head. (Sorry, I forgot to blog about that.) In that case, I was dehydrated. Maybe this time was a psychosomatic replay — back in the same corridors, standing up, getting aligned with the machine. Next time I'm doing one of these tests, I'll know to warn the tech.
After I get another hour or so of sleep, they're collecting blood for blood cultures. They also leave a kit for collecting a urine sample. The collection protocol is far too complicated and too time-consuming for me to comply with at 4:00 a.m. — I really have to go. At 6:00 a.m., I am able to follow the rules. Disturbingly, what initially comes out is blood instead of urine. Just a little, but still. The only amount of blood that is OK in these circumstances is none. I would have been even more disturbed if the same thing hadn't happened about a week ago. It doesn't hurt, there is no sign of infection, and I do have really low platelets. It's still just wrong. If it happens again, say my doctors, we'll consult a urologist.
Now, each time I pee only pee is a small victory. Every few hours, another win...
I had been running a mild fever in the evening for a few days, but not high enough to warrant any action. On Sunday evening, my fever reaches the magic threshold —38 Centigrade.
This means tests, throughout the night. They don't take any chances with fevers.
Around 1:00 a.m., Transport arrives to take me down for chest x-rays, to look for pneumonia. He wheels me to the elevator, down to the scanning floor, through a maze of turns and doors to the x-ray waiting area, which is empty. I am feeling pretty weak, and I am just about to get out of my chair and lie down on a couch when the tech comes in for me. As we're rolling down the hall, I feel a little flushed.
He takes me into the x-ray room and has me stand up with my chest against whatever it is they shoot us against. I'm tired. He aligns me and the background the way he wants, and steps out of the room into the control room. A voice tells me to breathe in and hold it, and then to breathe normally. I'm feeling lightheaded. I say out loud, "I'm feeling lightheaded."
The next thing I know, I am regaining consciousness in the wheelchair. I'm sweating and disoriented. The x-ray tech is next to me and tells me I was out for two minutes. (None of the doctors or nurses I later tell this to believe the two-minute estimate, chalking it up to the natural tendency to overestimate the duration of scary or unpleasant events.) The tech brings me a wet hand towel to cool me off, and somebody calls for the nurse from my corridor to come down.
By the time the nurse arrives, I feel fine. She gets into protective garb — why am I not in protective garb? — and stands next to me while we take the x-ray. And then she wheels me back to my room.
There's no obvious explanation for me passing out. My blood pressure is OK. I have only a light fever. I do sometimes get lightheaded when I stand up after sitting for a while, but in this case I had been standing for a while before all the blood suddenly rushed away from my brain. I had a nearly identical experience my first day back, during a CT scan of my head. (Sorry, I forgot to blog about that.) In that case, I was dehydrated. Maybe this time was a psychosomatic replay — back in the same corridors, standing up, getting aligned with the machine. Next time I'm doing one of these tests, I'll know to warn the tech.
After I get another hour or so of sleep, they're collecting blood for blood cultures. They also leave a kit for collecting a urine sample. The collection protocol is far too complicated and too time-consuming for me to comply with at 4:00 a.m. — I really have to go. At 6:00 a.m., I am able to follow the rules. Disturbingly, what initially comes out is blood instead of urine. Just a little, but still. The only amount of blood that is OK in these circumstances is none. I would have been even more disturbed if the same thing hadn't happened about a week ago. It doesn't hurt, there is no sign of infection, and I do have really low platelets. It's still just wrong. If it happens again, say my doctors, we'll consult a urologist.
Now, each time I pee only pee is a small victory. Every few hours, another win...
Wednesday, November 2, 2011
What's Going On
Not a question; an update.
Not much is going on with me, which is ideal. Last night was the first really bad night of sleep I've had since the first night. In general, the interruptions have been minimized and consolidated to midnight and 4:00 a.m. Last night, my nose was so congested I had to breathe through my mouth, which in the very dry hospital air leads to a parched mouth in about 15 minutes. So, every 15 minutes, if I had fallen asleep, I would wake up with a parched mouth and need to drink a little water.
I asked for some relief around 2:00 a.m. and was brought a nasal spray that the nurse said would work wonders. I suppose it might be helpful before your nasal passages become solidly blocked, but once that happens, the spray doesn't actually go anywhere useful.
At 3:30, I asked for a sleeping aid. At 4:00, the nurse told me she was waiting for a response from the doctor. At 4:30, the nurse told me the doctor had denied my request, because if I got a sleeping pill in the early morning I would sleep for much of the day. I said I didn't see the problem with that, since I was probably going to sleep much of the day anyway, having not yet had any sleep. At 5:00, the nurse brought me a sleeping pill.
During the day, my sinuses have been unplugged, and I have been using the nasal spray to try to keep them that way. I also will be getting a decongestant and a sleeping pill tonight.
My sister, Mara, came to town Sunday evening, in advance of tests on Monday. Tomorrow (Thursday), she will donate lymphocytes, which I may or may not use in the future. Then she will start taking her neupogen to stimulate stem cell growth. She will be getting a higher dose this time, so she may feel more uncomfortable. She'll head down to Champaign on Friday and come back Sunday to begin stem cell collection on Monday.
Last time, the harvest did not yield the ideal number of cells. Among the possible reasons are the difference between our weights and some difficulty with her veins. My doctor does not think the lower-than-optimal number is related to my relapse, because for a while after the transplant all the numbers looked as good as they could look. However, it doesn't hurt to have more.
The higher dose is one part of the effort to collect more stem cells this time. They will probably also use a femoral vein rather than a brachial vein, and if that's not doing the job, they may even put in a temporary central line on Tuesday. After the harvest, Mara can go home.
Meanwhile, my instructions are to cool my heels until November 15 while we wait to see my mid-term response to the most recent chemo. The early results are what they should be: my blood counts, and especially my white counts, are very low. I haven't lost my hair, though I did see more strands than usual on the washcloth during my last shower.
When we get to November 15, there are several paths we could go down. If there is no real blood count recovery, we will probably wipe everything out with another round of chemo and proceed to a transplant. Given my chemo response history, this seems like the most likely option.
If there is a solid recovery, and if a bone marrow biopsy shows that all or nearly all of the new marrow cells are offspring of Mara's cells from the previous transplant, then it might not make sense to wipe everything out and do another transplant. Instead, I might get a donor lymphocyte infusion (DLI). The idea would be to supercharge my immune response, hoping to find the right balance between killing any remaining leukemia cells and not doing too much harm to various organs (graft vs. host disease).
A third path, and I think the least likely, is that the blood counts look so good that we just let me recover without further intervention, closely monitoring the counts. Sometimes patients go into remission after this round of chemo.
= = =
In sports news, our sons' teams had historic soccer seasons this fall. Paul's high school team lost only twice all season and made it to the state quarterfinals, going several rounds farther than any soccer team had gone previously in school history. The core of the team is juniors, including Paul, so they have a good shot at success next year as well. I got to watch quite a few games before entering the hospital, and then several more on video thanks to a team parent.
Jake's Haverford team lost their first 4 conference games but won the remaining 5, making the conference tournament for the first time in the conference's 11-year history. (Fun trivia: Haverford is the oldest college soccer program in the country.) Tonight they won their first-round game, putting them into the semifinals on Friday. It's been a steady climb for Jake and the other seniors, who as freshman joined a team that had not won a conference game in years. I have been able to watch a few of Jake's games this fall, through poor quality live video feeds.
As for me, I'm walking 30 to 60 minutes a day, up and down the hall. There is a treadmill, but until I'm up to running, I'd rather really walk. It's hot enough in the double gown I have to wear, and when I walk the hall I get a slight cooling effect from moving through the air, and I don't have to wear gloves as I do on the treadmill.
Given my current training, I have amended my goal of actually running a 5K this fall. Instead, my goal is to complete a 5K, walking the whole way if that's what it takes. As long as I continue to be able to walk for 60 minutes straight, this seems realistic.
Not much is going on with me, which is ideal. Last night was the first really bad night of sleep I've had since the first night. In general, the interruptions have been minimized and consolidated to midnight and 4:00 a.m. Last night, my nose was so congested I had to breathe through my mouth, which in the very dry hospital air leads to a parched mouth in about 15 minutes. So, every 15 minutes, if I had fallen asleep, I would wake up with a parched mouth and need to drink a little water.
I asked for some relief around 2:00 a.m. and was brought a nasal spray that the nurse said would work wonders. I suppose it might be helpful before your nasal passages become solidly blocked, but once that happens, the spray doesn't actually go anywhere useful.
At 3:30, I asked for a sleeping aid. At 4:00, the nurse told me she was waiting for a response from the doctor. At 4:30, the nurse told me the doctor had denied my request, because if I got a sleeping pill in the early morning I would sleep for much of the day. I said I didn't see the problem with that, since I was probably going to sleep much of the day anyway, having not yet had any sleep. At 5:00, the nurse brought me a sleeping pill.
During the day, my sinuses have been unplugged, and I have been using the nasal spray to try to keep them that way. I also will be getting a decongestant and a sleeping pill tonight.
My sister, Mara, came to town Sunday evening, in advance of tests on Monday. Tomorrow (Thursday), she will donate lymphocytes, which I may or may not use in the future. Then she will start taking her neupogen to stimulate stem cell growth. She will be getting a higher dose this time, so she may feel more uncomfortable. She'll head down to Champaign on Friday and come back Sunday to begin stem cell collection on Monday.
Last time, the harvest did not yield the ideal number of cells. Among the possible reasons are the difference between our weights and some difficulty with her veins. My doctor does not think the lower-than-optimal number is related to my relapse, because for a while after the transplant all the numbers looked as good as they could look. However, it doesn't hurt to have more.
The higher dose is one part of the effort to collect more stem cells this time. They will probably also use a femoral vein rather than a brachial vein, and if that's not doing the job, they may even put in a temporary central line on Tuesday. After the harvest, Mara can go home.
Meanwhile, my instructions are to cool my heels until November 15 while we wait to see my mid-term response to the most recent chemo. The early results are what they should be: my blood counts, and especially my white counts, are very low. I haven't lost my hair, though I did see more strands than usual on the washcloth during my last shower.
When we get to November 15, there are several paths we could go down. If there is no real blood count recovery, we will probably wipe everything out with another round of chemo and proceed to a transplant. Given my chemo response history, this seems like the most likely option.
If there is a solid recovery, and if a bone marrow biopsy shows that all or nearly all of the new marrow cells are offspring of Mara's cells from the previous transplant, then it might not make sense to wipe everything out and do another transplant. Instead, I might get a donor lymphocyte infusion (DLI). The idea would be to supercharge my immune response, hoping to find the right balance between killing any remaining leukemia cells and not doing too much harm to various organs (graft vs. host disease).
A third path, and I think the least likely, is that the blood counts look so good that we just let me recover without further intervention, closely monitoring the counts. Sometimes patients go into remission after this round of chemo.
= = =
In sports news, our sons' teams had historic soccer seasons this fall. Paul's high school team lost only twice all season and made it to the state quarterfinals, going several rounds farther than any soccer team had gone previously in school history. The core of the team is juniors, including Paul, so they have a good shot at success next year as well. I got to watch quite a few games before entering the hospital, and then several more on video thanks to a team parent.
Jake's Haverford team lost their first 4 conference games but won the remaining 5, making the conference tournament for the first time in the conference's 11-year history. (Fun trivia: Haverford is the oldest college soccer program in the country.) Tonight they won their first-round game, putting them into the semifinals on Friday. It's been a steady climb for Jake and the other seniors, who as freshman joined a team that had not won a conference game in years. I have been able to watch a few of Jake's games this fall, through poor quality live video feeds.
As for me, I'm walking 30 to 60 minutes a day, up and down the hall. There is a treadmill, but until I'm up to running, I'd rather really walk. It's hot enough in the double gown I have to wear, and when I walk the hall I get a slight cooling effect from moving through the air, and I don't have to wear gloves as I do on the treadmill.
Given my current training, I have amended my goal of actually running a 5K this fall. Instead, my goal is to complete a 5K, walking the whole way if that's what it takes. As long as I continue to be able to walk for 60 minutes straight, this seems realistic.
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