The apartment with the sickeningly "fresh" air is going to work out after all, and Jan and I spent our first night in it. I will be here for an unknown number of weeks.
Jan talked to one of the owners of the apartment complex, and he was very sympathetic. The caretaker and other staff put in extra time airing out the apartment and washing the wooden floors (again) while Jan was at the hospital. By the time we got here Friday evening, the air was still slightly perfumed but easily tolerable.
The apartment is very nice. There is a main living/kitchen/dining area, of off which are a bathroom with shower, a bedroom, and a master bedroom that has a Jacuzzi in its bathroom.
I slept better than usual, though I still woke up four times to pee. That's several times less than a typical night in the hospital, and each time brought the small thrill of not having to pee into a small plastic urinal so that the nurses could track my output and the larger thrill of waking up and not being in the hospital.
Today (Saturday), I get a visit from a home health care nurse who hooks me up to my own IV pole for four hours of saline fluid. She also collects two-plus hours of information about medications, medical history, current state... A lot of the questions, especially ones like when did I start taking a specific medication, seem like they would be better answered by the hospital. I don't remember very clearly when a specific medication started, especially since several medication changes happened during my dilaudid daze.
In the morning, Jan and I took a walk on the balcony that runs outside the door along the length of the third floor. Coincidentally, the balcony is about the same length as the corridor I have been walking since mid-October.
During the day, we have been trying different foods that appeal to me. The best find so far has been whole milk, which meets my need to consume fat with one of my medications.
All in all, the last day of 2011 was pretty good, compared to most of the first and last three months. Here's to a better 2012.
Saturday, December 31, 2011
Thursday, December 29, 2011
D+16 — What Was The Plan, Again?
(Midday, Thursday)
The only things that seem certain right now are (1) that I am having two procedures today, one to put in a PICC line (a line going in just above my elbow) and one to remove my current jugular line, and (2) that the doctors are aiming to discharge me today.
I have heard "getting discharged" and "going home" used interchangeably, and given my experience the first time around, we were operating under the assumption that, in our case, they both meant returning to Champaign. Yesterday, my doctor made it clear that his definition was, leaving the hospital but staying fairly close. Since we live two-and-a-half hours away, "going home" excludes Champaign in my attending doctor's definition.
For round one, in the winter, my main doctor (not my current attending) was willing to make an exception because I was very stable and, despite all I went through, I had come through fairly strong.
Anyway, we were completely unprepared for this development, so we have been scrambling to find an acceptable place nearby. There are not many options.
On the other hand, we are more comfortable with staying near the hospital for a week or so than with going back to Champaign. I'm not as strong as I was upon discharge in the winter, and sticking close offers some comfort.
We have a reservation at a Hampton Inn 24 miles from the hospital (mostly highway).
We have a lead on a furnished apartment available for short-term least only a couple of miles from the hospital. Not sure about wi-fi, which would be essential for Jan and very useful for me.
We won't know if the Magnificent Mile condo that some friends have let Jan use in the past is available this weekend until this afternoon, but we suspect it is not.
We don't know if staying in the hospital into the weekend is an option.
(Mid-afternoon, Thursday)
The social worker has given us a lead on an apartment within two miles of the hospital. It looks fantastic. We also checked out a couple of extended stay hotels about 20 miles away.
Jan has rented a car, so that Jake and Paul can have a car, and is heading up to Chicago. Unfortunately for her, it is heavily perfumed to cover the smell of smoking. So, she is driving with the windows open, cold and nauseated.
I now have a PICC line in my left arm.
(Late afternoon, Thursday)
I get a very apologetic call from the nurse practitioner in charge of discharging. She and others who would be involved in the paperwork needed for my discharge have not been able to do what they need to do for me, due to an emergency on the floor for most of the afternoon. So the new plan is to stay one more night and have my jugular line removed tomorrow morning.
I'm OK with this development, though it's too bad that Jan had to rush up here this afternoon when it turns out she could have come up tomorrow morning.
As the nurse continues to apologize, I interrupt her. First, I understand that I am not the only patient. Second, I'm grateful the emergency wasn't me. Third, I think this actually works well for me. It allows me to have a night unconnected to the IV pole but still with nursing attention as needed. It's like a dry run for being out of the hospital.
(Early evening, Thursday)
The apartment is physically very nice, reports Jan, but it has a serious and probably disqualifying flaw. Like the car, it is redolent with what is sold as "air freshener" but which instead recreates the experience of being stuck in a broken elevator with someone who wears way too much cologne or perfume. All night. It nauseates Jan, and there is no way she can sleep there. Jan wonders if I would be able to sleep there either.
Right now, we're hoping the apartment complex has another apartment that hasn't been stink-bombed, but we suspect the air fresheners may be policy rather than an anomaly.
(Later in the evening)
The air freshener is apartment complex policy. Somebody in charge thinks it is better than the miscellaneous foreign smells (Chinese food, curry) left behind by some of the guests. We are working with one of the owners (who is out of town) and with the caretaker to see if an extended period of airing out will help. Give us curry anytime.
Jan may stay in the hospital tonight, choosing the nightly interruptions over the air freshener. And we may have to find another place to stay.
The only things that seem certain right now are (1) that I am having two procedures today, one to put in a PICC line (a line going in just above my elbow) and one to remove my current jugular line, and (2) that the doctors are aiming to discharge me today.
I have heard "getting discharged" and "going home" used interchangeably, and given my experience the first time around, we were operating under the assumption that, in our case, they both meant returning to Champaign. Yesterday, my doctor made it clear that his definition was, leaving the hospital but staying fairly close. Since we live two-and-a-half hours away, "going home" excludes Champaign in my attending doctor's definition.
For round one, in the winter, my main doctor (not my current attending) was willing to make an exception because I was very stable and, despite all I went through, I had come through fairly strong.
Anyway, we were completely unprepared for this development, so we have been scrambling to find an acceptable place nearby. There are not many options.
On the other hand, we are more comfortable with staying near the hospital for a week or so than with going back to Champaign. I'm not as strong as I was upon discharge in the winter, and sticking close offers some comfort.
We have a reservation at a Hampton Inn 24 miles from the hospital (mostly highway).
We have a lead on a furnished apartment available for short-term least only a couple of miles from the hospital. Not sure about wi-fi, which would be essential for Jan and very useful for me.
We won't know if the Magnificent Mile condo that some friends have let Jan use in the past is available this weekend until this afternoon, but we suspect it is not.
We don't know if staying in the hospital into the weekend is an option.
(Mid-afternoon, Thursday)
The social worker has given us a lead on an apartment within two miles of the hospital. It looks fantastic. We also checked out a couple of extended stay hotels about 20 miles away.
Jan has rented a car, so that Jake and Paul can have a car, and is heading up to Chicago. Unfortunately for her, it is heavily perfumed to cover the smell of smoking. So, she is driving with the windows open, cold and nauseated.
I now have a PICC line in my left arm.
(Late afternoon, Thursday)
I get a very apologetic call from the nurse practitioner in charge of discharging. She and others who would be involved in the paperwork needed for my discharge have not been able to do what they need to do for me, due to an emergency on the floor for most of the afternoon. So the new plan is to stay one more night and have my jugular line removed tomorrow morning.
I'm OK with this development, though it's too bad that Jan had to rush up here this afternoon when it turns out she could have come up tomorrow morning.
As the nurse continues to apologize, I interrupt her. First, I understand that I am not the only patient. Second, I'm grateful the emergency wasn't me. Third, I think this actually works well for me. It allows me to have a night unconnected to the IV pole but still with nursing attention as needed. It's like a dry run for being out of the hospital.
(Early evening, Thursday)
The apartment is physically very nice, reports Jan, but it has a serious and probably disqualifying flaw. Like the car, it is redolent with what is sold as "air freshener" but which instead recreates the experience of being stuck in a broken elevator with someone who wears way too much cologne or perfume. All night. It nauseates Jan, and there is no way she can sleep there. Jan wonders if I would be able to sleep there either.
Right now, we're hoping the apartment complex has another apartment that hasn't been stink-bombed, but we suspect the air fresheners may be policy rather than an anomaly.
(Later in the evening)
The air freshener is apartment complex policy. Somebody in charge thinks it is better than the miscellaneous foreign smells (Chinese food, curry) left behind by some of the guests. We are working with one of the owners (who is out of town) and with the caretaker to see if an extended period of airing out will help. Give us curry anytime.
Jan may stay in the hospital tonight, choosing the nightly interruptions over the air freshener. And we may have to find another place to stay.
Tuesday, December 27, 2011
D+14 — Trying to Eat
First, the WBC:
0.1 D+8
0.2 D+9
0.6 D+10
0.8 D+11
1.7 D+12
2.6 D+13
3.1 D+14
The WBC is no longer doubling, but it's still growing fast enough that the doctor wants to send me home on Thursday (D+16). Thursday allows me to come back Friday and report right away on how things are going at home. If I were to go home Friday, I wouldn't be able to come back until Tuesday because of the weekend and the holiday, and that's too long a gap for the first return appointment.
In order for me to go home with the fewest complications, I should be creating my own platelets consistently, and I should be taking medications only by mouth. Otherwise, I would have to go home with an IV pole, or stay in the hospital over the weekend.
One of the medicines the Infectious Disease team wants me to take performs best when taken with a fatty meal. Normally, this would not be a problem, but my current appetite makes it hard to eat anything and especially rebels at fatty foods. This evening, just the smell of a fried fish sandwich and fries caused me to retch up some juice I had managed to get down a couple of hours earlier.
Fortunately, my nurse suggested I give Ensure another try. I had found it repulsive weeks ago, but this time I was able to drink an entire bottle. So, if I can't eat regular food, I can at least drink Ensure. I sure hope my taste recovers soon.
= = =
P.S. I added a music video from my family to the D+12 post.
0.1 D+8
0.2 D+9
0.6 D+10
0.8 D+11
1.7 D+12
2.6 D+13
3.1 D+14
The WBC is no longer doubling, but it's still growing fast enough that the doctor wants to send me home on Thursday (D+16). Thursday allows me to come back Friday and report right away on how things are going at home. If I were to go home Friday, I wouldn't be able to come back until Tuesday because of the weekend and the holiday, and that's too long a gap for the first return appointment.
In order for me to go home with the fewest complications, I should be creating my own platelets consistently, and I should be taking medications only by mouth. Otherwise, I would have to go home with an IV pole, or stay in the hospital over the weekend.
One of the medicines the Infectious Disease team wants me to take performs best when taken with a fatty meal. Normally, this would not be a problem, but my current appetite makes it hard to eat anything and especially rebels at fatty foods. This evening, just the smell of a fried fish sandwich and fries caused me to retch up some juice I had managed to get down a couple of hours earlier.
Fortunately, my nurse suggested I give Ensure another try. I had found it repulsive weeks ago, but this time I was able to drink an entire bottle. So, if I can't eat regular food, I can at least drink Ensure. I sure hope my taste recovers soon.
= = =
P.S. I added a music video from my family to the D+12 post.
Sunday, December 25, 2011
D+12 — A White (Blood Cell) Christmas
(with thanks to several commenters for suggesting the title for this post)
WBC
0.1 D+8
0.2 D+9
0.6 D+10
0.8 D+11
1.7 D+12
The doctors are not bothering to look at the ANC because, at this point in the recovery from a stem cell transplant, such a high proportion of the white blood cells are neutrophils that it is extremely unlikely that my ANC isn't high enough.
At this rate of exponential growth, my WBC will be sufficient for going home in a couple of days.
In addition to getting the WBC where it needs to be, we also need to figure out how to adjust my meds to the reality of being at home instead of in a hospital, and also how to monitor blood counts and deal with shortfalls as needed.
Not home yet, but I can see it from here.
Especially with a little help from my extended family.
WBC
0.1 D+8
0.2 D+9
0.6 D+10
0.8 D+11
1.7 D+12
The doctors are not bothering to look at the ANC because, at this point in the recovery from a stem cell transplant, such a high proportion of the white blood cells are neutrophils that it is extremely unlikely that my ANC isn't high enough.
At this rate of exponential growth, my WBC will be sufficient for going home in a couple of days.
In addition to getting the WBC where it needs to be, we also need to figure out how to adjust my meds to the reality of being at home instead of in a hospital, and also how to monitor blood counts and deal with shortfalls as needed.
Not home yet, but I can see it from here.
Especially with a little help from my extended family.
Dilaudid Daze
Note: This timeline may or may not be accurate. I don't really know. I know the events below happened, and most likely in the order below. I am less confident in the specific days. The problem is that, until Christmas Eve, I have found it very difficult to write while getting enough pain medication to be able to swallow.
(D+9, Thursday?)
The morphine did its job for my back spasm. However, the next day, my throat was increasingly red and sore, and I was increasingly reluctant to swallow. Different nurses had different approaches to this problem, as the problem gets worse:
I often find myself waiting longer than expected to get my dose. First, there is a wait for the task of resolving my pain to rise to the top of the nurse's pile. Then, if we are changing the dose, there is a wait for getting through to the doctor on call and waiting for the dose inquiry to rise to the top of the doctor's pile.
Or at least, I think that's what's going on. I am not always competent to judge my nurses. One time, I asked for a dose of dilaudid around 6 in the evening. Around 8, I was talking to Jan and complaining that I had not received a dose for hours. My night nurse, who had just checked my records, overheard me and corrected me — I had been given a dose at 6:18 and either forgot or slept through it.
There were definitely other times that I was not fully in charge of my faculties, such as when I would fall asleep while eating or it would take me an hour to write a paragraph that, upon later reflection, was pretty incoherent and often full of repetition. In these cases, I was probably getting more than I should, even though it was not sufficiently managing the pain.
In a discussion with the nurse practitioner on my case, we decide it's time to switch to a pump.
On Saturday, I wake up with a tolerable sore throat. The pain pump is set to ensure that I receive at least 1 mg per hour, and I had added a few extra shots when I woke up during the night to pee. This tells me that even a fairly low dose does a fair job of managing the pain, which means the unmanaged pain wouldn't be so bad. Good news!
We lower the background dose on Sunday, which is Christmas, and I don't press the button all day. I can swallow without pain, so I'm back to my only eating-related problem being the fact that all food tastes terrible.
(D+9, Thursday?)
The morphine did its job for my back spasm. However, the next day, my throat was increasingly red and sore, and I was increasingly reluctant to swallow. Different nurses had different approaches to this problem, as the problem gets worse:
- I just have to do this. (For a few rounds of medication, I am able to force myself to swallow tablets and capsules. Then I start gagging upon swallowing anything without a smooth texture.)
- We can crush tablets and mix with applesauce, which I might be more capable of swallowing. (For a few more rounds, I am able to do this. Then I start gagging on the presence of any grains of anything.)
- We can open the capsules and mix the contents with applesauce. (But eventually, I can't swallow even water or applesauce.)
I often find myself waiting longer than expected to get my dose. First, there is a wait for the task of resolving my pain to rise to the top of the nurse's pile. Then, if we are changing the dose, there is a wait for getting through to the doctor on call and waiting for the dose inquiry to rise to the top of the doctor's pile.
Or at least, I think that's what's going on. I am not always competent to judge my nurses. One time, I asked for a dose of dilaudid around 6 in the evening. Around 8, I was talking to Jan and complaining that I had not received a dose for hours. My night nurse, who had just checked my records, overheard me and corrected me — I had been given a dose at 6:18 and either forgot or slept through it.
There were definitely other times that I was not fully in charge of my faculties, such as when I would fall asleep while eating or it would take me an hour to write a paragraph that, upon later reflection, was pretty incoherent and often full of repetition. In these cases, I was probably getting more than I should, even though it was not sufficiently managing the pain.
In a discussion with the nurse practitioner on my case, we decide it's time to switch to a pump.
A few hours later, I request my next dose of dilaudid, because my throat pain is no longer tolerable. My nurse tells me I can no longer request dilaudid, because my order has been switched to the pump.
Patient: Can we set up the pump, then?
Nurse: No. We don't have one on the floor. But we have put in a call to transport.
Patient: (Uh oh...)
About every half hour, a different nurse pokes her head into my room to tell me that the pump is coming. I become increasingly skeptical and agitated. I make the point that it isn't a good policy to cancel one medical treatment in favor of its replacement until that replacement is actually in hand.
A couple of hours into waiting for the pump, a nurse observes that I can get a one-time dose of dilaudid. That would have been good to know a couple of hours ago, but I am relieved to finally get some pain medication.
I get a visit from a transportation manager, apologizing for the mix-up. Then I get a visit from the nursing manager. From the two visits, I gather the following:
About every half hour, a different nurse pokes her head into my room to tell me that the pump is coming. I become increasingly skeptical and agitated. I make the point that it isn't a good policy to cancel one medical treatment in favor of its replacement until that replacement is actually in hand.
A couple of hours into waiting for the pump, a nurse observes that I can get a one-time dose of dilaudid. That would have been good to know a couple of hours ago, but I am relieved to finally get some pain medication.
I get a visit from a transportation manager, apologizing for the mix-up. Then I get a visit from the nursing manager. From the two visits, I gather the following:
- Our floor did not have a pain pump. Each floor is supposed to have one.
- The initial request for a pain pump got lost.
- My nurse was fairly new to the floor, which may explain why she didn't think of the one-time dose.
The pump supplies a continuous flow of 1 mg of dilaudid per hour, and I have a button I can press every 10 minutes to get an additional 0.3 mg. The idea is that if I ever pump myself into unconsciousness, I won't be alert enough to keep pressing the button.
On Saturday, I wake up with a tolerable sore throat. The pain pump is set to ensure that I receive at least 1 mg per hour, and I had added a few extra shots when I woke up during the night to pee. This tells me that even a fairly low dose does a fair job of managing the pain, which means the unmanaged pain wouldn't be so bad. Good news!
We lower the background dose on Sunday, which is Christmas, and I don't press the button all day. I can swallow without pain, so I'm back to my only eating-related problem being the fact that all food tastes terrible.
Friday, December 23, 2011
D+10 — Counts!
At this point, it's all about the counts.
My white blood cell count (WBC) has been essentially zero since my last round of chemo, as expected. The WBC is normally between 4000 and 10,000, and I need those white blood cells to fight infections. On D+8, they went from zero — listed as <0.1, because WBC is measured in thousands — to 0.1 (100). Yesterday, D+9, the counts were 0.2, and today, 0.6. They increase exponentially for a while, so they should reach the normal range in a few days.
In addition to the WBC, the other noteworthy number is ANC (absolute neutrophil count). Neutrophils are a subset of WBC. In this case, we're looking for 500, the minimum value for being able to fight infection on my own. Above 1500 is normal. We haven't been measuring this yet, since there haven't been enough white blood cells to take a subset. I bet we measure ANC from now on.
Tuesday, December 20, 2011
D+7 — I Knew It Could Be Worse
My typical night is not a good night of sleep. In addition to the external interruptions of vitals checks and medication changes and blood draws — sometimes from a line and sometimes from a needle in the arm — I also get up every hour to pee.
Last night, shortly after getting into bed, I got a back spasm at my tailbone. I have had back spasms before, but usually with an obvious cause like a sneeze or a poorly executed lift of something heavy. This one was just out of nowhere. And it was bad.
It took a while for a nurse to come in and talk to me. She wanted me to rate the pain on a scale of 1 to 10. I always have trouble with this question. After all, no matter how much something hurts, it could hurt more. Can you ever reach 10? In this case, I decided that writhing and moaning was equal to 8, which was high enough for my nurse to make an inquiry. Of course, that takes time, during which I'm still writhing and moaning on the bed. The first drug they tried didn't help, and then they switched to morphine. Not very much morphine, but it did the trick. So, two hours after the start of spasm, I started my typical sleep in 60-minute pieces.
But that's not all! The mucositis has gotten worse over the course of today. No mouth sores or diarrhea, but the pain of swallowing has reached the point of me not being willing to eat. Since this afternoon, we have been trying to find the level of pain medication (currently morphine) that will allow me to swallow. So far, we haven't found the dosage, but I'm sure we will.
So, not a very good day. But I am one day closer to being through this uncomfortable phase. In a couple of days, we should see the start of countable white blood cells. Almost there.
Last night, shortly after getting into bed, I got a back spasm at my tailbone. I have had back spasms before, but usually with an obvious cause like a sneeze or a poorly executed lift of something heavy. This one was just out of nowhere. And it was bad.
It took a while for a nurse to come in and talk to me. She wanted me to rate the pain on a scale of 1 to 10. I always have trouble with this question. After all, no matter how much something hurts, it could hurt more. Can you ever reach 10? In this case, I decided that writhing and moaning was equal to 8, which was high enough for my nurse to make an inquiry. Of course, that takes time, during which I'm still writhing and moaning on the bed. The first drug they tried didn't help, and then they switched to morphine. Not very much morphine, but it did the trick. So, two hours after the start of spasm, I started my typical sleep in 60-minute pieces.
But that's not all! The mucositis has gotten worse over the course of today. No mouth sores or diarrhea, but the pain of swallowing has reached the point of me not being willing to eat. Since this afternoon, we have been trying to find the level of pain medication (currently morphine) that will allow me to swallow. So far, we haven't found the dosage, but I'm sure we will.
So, not a very good day. But I am one day closer to being through this uncomfortable phase. In a couple of days, we should see the start of countable white blood cells. Almost there.
Monday, December 19, 2011
D+6 — Could Be Worse
I am now six days beyond the transplant. Everything is going as expected: blood counts extremely low, no appetite (probably because all food tastes bad), and mucositis.
Mucositis is the inflammation of the mucus membranes lining the digestive tract, from the mouth to the anus. These cells, like leukemic cells, divide rapidly, and busulfan (the key drug in my most recent chemo) attacks both with ferocity. Symptoms are mouth sores, painful swallowing, and diarrhea, which are all the result of the mucus membrane dying and shedding.
My mucositis started a couple of days ago, with a slightly sore throat. Since then, swallowing has been a little painful, but it has not reached the point that I can't bear to eat. It can get that bad, and that could still happen for me. But it might not. Currently, my appetite and the way food tastes are greater obstacles to eating than the pain of swallowing.
Mucositis usually lasts five or six days, and I am into my third day. Every day it's not horrible is one more day I'm avoiding the most severe symptoms. Or, as I tell myself many times every day, about many things, it could be worse. (And it's going to get better.)
= = =
The next big event to look forward to is the appearance of white blood cells in my daily blood tests. The white blood cell count has been negligible for a while now. Some time around D+10, give or take a day, there will be enough white blood cells to count. Their numbers then typically grow very rapidly, and they are the primary factor in being able to leave the hospital.
In my case, they could start showing up as early as D+8, because I am receiving neupogen shots. This is the same drug my sister Mara injected herself with before having her stem cells harvested. In my case, the idea is to speed up stem cell production so that I get my white counts up a little sooner than I would otherwise, because then I can help fight my current infection(s).
Mucositis is the inflammation of the mucus membranes lining the digestive tract, from the mouth to the anus. These cells, like leukemic cells, divide rapidly, and busulfan (the key drug in my most recent chemo) attacks both with ferocity. Symptoms are mouth sores, painful swallowing, and diarrhea, which are all the result of the mucus membrane dying and shedding.
My mucositis started a couple of days ago, with a slightly sore throat. Since then, swallowing has been a little painful, but it has not reached the point that I can't bear to eat. It can get that bad, and that could still happen for me. But it might not. Currently, my appetite and the way food tastes are greater obstacles to eating than the pain of swallowing.
Mucositis usually lasts five or six days, and I am into my third day. Every day it's not horrible is one more day I'm avoiding the most severe symptoms. Or, as I tell myself many times every day, about many things, it could be worse. (And it's going to get better.)
= = =
The next big event to look forward to is the appearance of white blood cells in my daily blood tests. The white blood cell count has been negligible for a while now. Some time around D+10, give or take a day, there will be enough white blood cells to count. Their numbers then typically grow very rapidly, and they are the primary factor in being able to leave the hospital.
In my case, they could start showing up as early as D+8, because I am receiving neupogen shots. This is the same drug my sister Mara injected herself with before having her stem cells harvested. In my case, the idea is to speed up stem cell production so that I get my white counts up a little sooner than I would otherwise, because then I can help fight my current infection(s).
Thursday, December 15, 2011
D+2 — Fever Gone
No fever at all today. It might be the round-the-clock Tylenol, or it might be, if I do have an infection, that one of the powerful antifungal/viral/bacterial medications I am on is keeping that infection in check.
The cause of the sustained high fever remains a mystery. (Solving the mystery is now a matter of curiosity rather than urgency.) Here are the suspects:
The cause of the sustained high fever remains a mystery. (Solving the mystery is now a matter of curiosity rather than urgency.) Here are the suspects:
- An infection stirred up by the sinus surgery the day before my transplant (I did have a low fever before the transplant)
- Reaction to the transplant
- Some other infection
Although I am on Tylenol now, that was not an option during the fever. The key pre-transplant chemo drug, busulfan, is hard on the liver, and Tylenol accentuates the effect.
Instead of Tylenol, I got a special pad for my bed. It's a thin plastic pad with a honeycomb of channels that fill with water, connected to a machine that keeps the water at whatever temperature you want. Even though it did not decrease my temperature, at least for the first day, it did increase my comfort. Or maybe it kept my fever from getting even higher.
I'm now rid of the fever and the pad. My complaint of the day is a strong metallic taste in my mouth. It makes everything taste terrible. I hear it's a common post-chemo experience.
It will pass.
And then something else will be my complaint of the day.
And as long as I have a complaint of the day, it means I have another day. Under the current circumstances, that's a victory.
Wednesday, December 14, 2011
Transplant Day
Tuesday was transplant day. A little after 10 a.m., I got four bags of my sister's stem cells.
The rest of the day I was very tired. Then I started running a fever, which continued all night. The nursing assistant kept taking my temperature, and the temperature kept rising: 38.5, 39.3, 39.7, 39.9. Normal is 37.0 (98.6); 38.0 is when they start calling it a fever. 38.5? If I weren't feverish, I could do the conversion. Instead, I page the nursing station and ask for the conversion so that I could text Jan a number she could understand. (39.9 = 103.8)
Wednesday... still feverish, with occasional breaks.
More later...
The rest of the day I was very tired. Then I started running a fever, which continued all night. The nursing assistant kept taking my temperature, and the temperature kept rising: 38.5, 39.3, 39.7, 39.9. Normal is 37.0 (98.6); 38.0 is when they start calling it a fever. 38.5? If I weren't feverish, I could do the conversion. Instead, I page the nursing station and ask for the conversion so that I could text Jan a number she could understand. (39.9 = 103.8)
Wednesday... still feverish, with occasional breaks.
More later...
Monday, December 12, 2011
They Missed an Option... Thank Goodness!
Last night, when ENT was describing the two outcomes of today's sinus surgery, there was the lucky outcome (no fungus, can't breathe through my nose for a week or more) and the unlucky outcome (fungus, can't breathe through my nose for a week or more, and I'm in a precarious battle after the transplant).
For some reason, they missed what turned out to be the actual outcome, which was even better than the lucky one: no fungus, I should be able to breathe through my nose in a day, and they removed a clown car's worth of mucus, blood, crud, old packing, and other mysteries from my sinuses, left over from their earlier expeditions. I think of this as a delayed version of Carry In, Carry Out.
They did see something suspicious, but it's already checked out.
Tomorrow is Transplant Day.
For some reason, they missed what turned out to be the actual outcome, which was even better than the lucky one: no fungus, I should be able to breathe through my nose in a day, and they removed a clown car's worth of mucus, blood, crud, old packing, and other mysteries from my sinuses, left over from their earlier expeditions. I think of this as a delayed version of Carry In, Carry Out.
They did see something suspicious, but it's already checked out.
Tomorrow is Transplant Day.
Sunday, December 11, 2011
Minor Monday Becomes Major
I didn't think Monday was going to be as important as I have now learned that it is.
I thought it would just be the last day before my stem cell transplant, and the day I got a new line. For several days, my attending physician has talked about how we were just counting down the days to transplant, and the Monday would be a little busy because we would be putting in a temporary line for the transplant. (After two infected central lines, my team has decided to avoid long-term ports for me.)
Over the last few days, the ID folks would occasionally stop by to say everything seemed fine, which also suggested a clear path to Tuesday's transplant.
I had not seen the ENT staff since Wednesday, when some ambiguous imagery on a CT scan encouraged them to take a look with some bedside tools. They could not see as far in as they would have liked, but in the absence of symptoms — pain, vision problems, fever — they also didn't too concerned. Without hearing any more from them, and with my attending's repeated description of minimal action on Monday, I thought I knew what Monday would be like.
Then, for not the first time in this round of treatment, I get a visit from anesthesiology about an upcoming sinus surgery that I am not expecting. This throws me off balance. I feel like the various teams of doctors looking after me aren't communicating with each other, because I feel like I'm getting different messages from different teams. I let various doctors and nurses know how I feel about this.
At one point, I'm wondering whether the sinus surgery can actually prevent the transplant from happening. (It cannot.) The surgery does not sound too bad — mostly a looking around — but I still dread it, for multiple reasons.
If I'm lucky, they clean out some crud left over from earlier visits, they don't find anything new and alarming, and they pack my nose full of crap for another week and a half. Transplant on Tuesday.
If I'm less lucky, everything is the same as above, except that they find more active fungal infection hiding underneath the crud, which they (again) do their best to remove. Then there's a complicated couple of weeks as the fungus tries to exploit the missing immune system, the doctors battle the fungus with medications, and the new immune system boots up after the transplant.
So, I'm not happy about my upcoming surgery. I'm not happy that it was a surprise, I'm not happy that I'm going to get my nose packed again. I'm especially not happy that my illusion that I was past worrying about the fungal infection has been broken.
But, on the other hand, it needs to happen, so I'm glad it's happening. We need to know what we're dealing with.
I thought it would just be the last day before my stem cell transplant, and the day I got a new line. For several days, my attending physician has talked about how we were just counting down the days to transplant, and the Monday would be a little busy because we would be putting in a temporary line for the transplant. (After two infected central lines, my team has decided to avoid long-term ports for me.)
Over the last few days, the ID folks would occasionally stop by to say everything seemed fine, which also suggested a clear path to Tuesday's transplant.
I had not seen the ENT staff since Wednesday, when some ambiguous imagery on a CT scan encouraged them to take a look with some bedside tools. They could not see as far in as they would have liked, but in the absence of symptoms — pain, vision problems, fever — they also didn't too concerned. Without hearing any more from them, and with my attending's repeated description of minimal action on Monday, I thought I knew what Monday would be like.
Then, for not the first time in this round of treatment, I get a visit from anesthesiology about an upcoming sinus surgery that I am not expecting. This throws me off balance. I feel like the various teams of doctors looking after me aren't communicating with each other, because I feel like I'm getting different messages from different teams. I let various doctors and nurses know how I feel about this.
At one point, I'm wondering whether the sinus surgery can actually prevent the transplant from happening. (It cannot.) The surgery does not sound too bad — mostly a looking around — but I still dread it, for multiple reasons.
If I'm lucky, they clean out some crud left over from earlier visits, they don't find anything new and alarming, and they pack my nose full of crap for another week and a half. Transplant on Tuesday.
If I'm less lucky, everything is the same as above, except that they find more active fungal infection hiding underneath the crud, which they (again) do their best to remove. Then there's a complicated couple of weeks as the fungus tries to exploit the missing immune system, the doctors battle the fungus with medications, and the new immune system boots up after the transplant.
So, I'm not happy about my upcoming surgery. I'm not happy that it was a surprise, I'm not happy that I'm going to get my nose packed again. I'm especially not happy that my illusion that I was past worrying about the fungal infection has been broken.
But, on the other hand, it needs to happen, so I'm glad it's happening. We need to know what we're dealing with.
Deck the Halls
Because we have always visited family in the Boston area over the holidays, we have never decorated our house. With my upcoming travel restrictions, the Seeleys will be spending their first Christmas in Champaign since Jan and I moved out here in 1987.
On Saturday, a team from Human Kinetics visited to give the Seeley home an uncharacteristic holiday makeover. Our neighbors are going to wonder who is living at the house and what they have done with the Seeleys.
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| Doug untangles lights under the guidance of Steve's kids. |
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| Kim, Dalene, and Jill prepare exterior decorations. |
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| Joanne and Keri before working their magic on the tree. |
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| The Seeleys, real tree people since childhood, have made the transition to a ... reusable tree. This was our wonderful work crew, minus the Ruhlig family that had to leave earlier. |
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| Kerri wonders what she has gotten herself into. |
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| Wow! |
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| Enjoying some well deserved refreshments. |
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| Looking good at night, too, |
Yard Work
I usually handle most of the yard work at our house. I don't resent it; I enjoy it. I like the smells, the colors, the sounds, the effort, the results... Unfortunately, one aspect in particular, the smells, is inextricably linked to the molds and fungi that keep trying to establish colonies in my head and/or lungs, with potentially deadly results. So, no yard work, even when I was home in the spring and summer.
Since my medical team did not approve my leaving the hospital to take care of the end-of-fall yard work, we were blessed with a work crew.
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| Bob goes the solo route. |
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| Mary, Janna, and Mandy take a team approach. |
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| Lisa, Mara, and Ellen |
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| Paul likes letting machines do some of the work. |
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| Fred and Mark round out the crew. |
Thursday, December 8, 2011
All Aboard for Transplant Station
My chemo started Tuesday morning. 4:00 a.m. in the morning. Lots of bags and pre-meds and blood draws. I didn't care. No noticeable side effects. On the first day, it's Fludara and Campath.
Repeat Wednesday morning, with the addition of Busulfex. Still not seeing any side effects, including the one that would alarm me most: changes in menstrual cycle. Sleep is constantly disrupted, as is the day time, but I don't care. I had a blood test drawn in the morning to test my response to a dose of platelets which I would receive several hours later. They're going to be disappointed in the results, and I'm going to get stuck again later so they can get real results. Doesn't bother me.
I decided it was time to shave my head, since I was not fond of the retreating glacier model of hair loss:
Speaking of fungi, the ENT team is still nosing around my sinuses like pigs after truffles, trying to decide whether to start digging again. A recent CT scan showed "some stuff" where ideally there wouldn't be anything, but where there often is stuff even in perfectly healthy people. It seems like still an open question for the ENT team, but I get the sense they are leaning toward watchful waiting in the absence of symptoms.
Two more days of chemo (Friday, Saturday), two days of rest (Sunday, Monday)... Transplant on Tuesday!
Repeat Wednesday morning, with the addition of Busulfex. Still not seeing any side effects, including the one that would alarm me most: changes in menstrual cycle. Sleep is constantly disrupted, as is the day time, but I don't care. I had a blood test drawn in the morning to test my response to a dose of platelets which I would receive several hours later. They're going to be disappointed in the results, and I'm going to get stuck again later so they can get real results. Doesn't bother me.
I decided it was time to shave my head, since I was not fond of the retreating glacier model of hair loss:
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| Proof that cranial cooling is happening, and it's caused by man. |
 This is my "kick leukemia's butt" look. |
Day 3 of chemo is today. Still feeling good. I know the chemo is the worst part of treatment for a lot of people, and I feel fortunate that that is not the case for me. Of course, I get to grapple with brain-eating fungi and emergency surgeries, so maybe I'm getting the short straw after all. |
Speaking of fungi, the ENT team is still nosing around my sinuses like pigs after truffles, trying to decide whether to start digging again. A recent CT scan showed "some stuff" where ideally there wouldn't be anything, but where there often is stuff even in perfectly healthy people. It seems like still an open question for the ENT team, but I get the sense they are leaning toward watchful waiting in the absence of symptoms.
Two more days of chemo (Friday, Saturday), two days of rest (Sunday, Monday)... Transplant on Tuesday!
Monday, December 5, 2011
The Good News Is...
My biopsy results indicate that I am ready to proceed to the transplant phase. (!)
Since the failure of the October chemo, and the sinus infection, the plan has been to avoid infection, try a different chemo, do a biopsy, and —if the biopsy results were as desired — head into the transplant phase.
Left unspoken has always been, what if the biopsy results weren't good? Fortunately, we can skip right over that possibility now.
Since the failure of the October chemo, and the sinus infection, the plan has been to avoid infection, try a different chemo, do a biopsy, and —if the biopsy results were as desired — head into the transplant phase.
Left unspoken has always been, what if the biopsy results weren't good? Fortunately, we can skip right over that possibility now.
Thursday, December 1, 2011
A Widening Path
My blood counts and I have been doing what we should this past week. No white blood cells. No fevers. Clear lungs. No indication, either from test results or symptoms, that the fungal infection in my sinuses is active. Daily walks (about 30 minutes). Eating well.
My reward is that I have a bone marrow biopsy scheduled (originally Friday, now moved to today for staffing reasons) and a tentative chemo+transplant schedule starting next week.
Yesterday, I had a lot of doctor visits. I had been requesting a visit from the ENT folks, to confirm that the crud I still have in my nose is an expected part of the recovery. I got one visit, got my confirmation after a little viewing with a pen light, and thanked the doctor for reassuring me. I told here that was all I needed — just a figurative (but informed) pat on the hand telling me I'm doing fine. Later in the afternoon, a larger ENT team showed up, somehow under the impression that I was increasingly concerned about my sinuses. For them to really tell me all is well, they would need to run a scope up my sinuses. This is mildly uncomfortable, but the bigger problem is that it carries risks. With my blood counts as low as they are, sticking anything into my sinuses could, despite sterilization precautions, introduce some infectious agent that I can't fight, or could restart the bleeding that finally stopped after three weeks. In the absence of clinical evidence of an infection, it's not worth the risk. Which is fine with me.
I also had a couple of visits from the the Infectious Disease team. The first informed me that they were running some tests on the vulnerability of my particular fungal antagonist to one of the antifungal meds I was receiving. The second informed me that they had just learned that that particular antifungal appeared to be quite ineffective, so they were switching me to something else. Yikes! I'm glad they did the legwork and figured this out before anything bad happened, but it's still unnerving.
My reward is that I have a bone marrow biopsy scheduled (originally Friday, now moved to today for staffing reasons) and a tentative chemo+transplant schedule starting next week.
Yesterday, I had a lot of doctor visits. I had been requesting a visit from the ENT folks, to confirm that the crud I still have in my nose is an expected part of the recovery. I got one visit, got my confirmation after a little viewing with a pen light, and thanked the doctor for reassuring me. I told here that was all I needed — just a figurative (but informed) pat on the hand telling me I'm doing fine. Later in the afternoon, a larger ENT team showed up, somehow under the impression that I was increasingly concerned about my sinuses. For them to really tell me all is well, they would need to run a scope up my sinuses. This is mildly uncomfortable, but the bigger problem is that it carries risks. With my blood counts as low as they are, sticking anything into my sinuses could, despite sterilization precautions, introduce some infectious agent that I can't fight, or could restart the bleeding that finally stopped after three weeks. In the absence of clinical evidence of an infection, it's not worth the risk. Which is fine with me.
I also had a couple of visits from the the Infectious Disease team. The first informed me that they were running some tests on the vulnerability of my particular fungal antagonist to one of the antifungal meds I was receiving. The second informed me that they had just learned that that particular antifungal appeared to be quite ineffective, so they were switching me to something else. Yikes! I'm glad they did the legwork and figured this out before anything bad happened, but it's still unnerving.
My Campaign for Quiche
I have mentioned before that the improvement in the food service has been tremendous: many new healthy choices, an after-hours menu, and daily inquiries about me and my food orders. Patients can also order from the staff cafeteria menu for lunch and dinner on weekdays, further adding to the variety available.
And I have found the food service open to modifications. One common modification for me lately: the hummus appetizer with cucumbers, carrots, and pita chips, substituting extra cucumbers for the carrots and pita chips.
There are two women with responsibility for two floors, and I think they stop by each room at least once a day to check in with the patients. I think one may be responsible for recording information about each patient, while the other one is focused on helping patients find items that may appeal to them, but they seem to ask similar questions and make similar suggestions. And there is an occasional phone call asking for my overall feedback on the service.
My feedback: I am very impressed with how thoroughly the hospital system has embraced the idea that eating well is a critical part of the patient experience.
(Ironically, as I write this, I have experienced my first delivery delay. We pretty consistently receive our order within 45 minutes, and tonight's dinner took 90 minutes to get here. Given the length of my current stay, that's still very good performance overall.)
On Sunday, Jan visited with some leftovers from the Champaign Thanksgiving dinner she and the boys had made on Friday. (I had joined via Skype, from a laptop sitting on a counter overlooking the dining room table.) These leftovers were much better than the Boston Market offerings we had shared on Thursday. My favorites were a cranberry chutney that Jan made, pumpkin cheesecake that Paul made, and a ham and goudacheesecake quiche that Jake made.
While enjoying my leftovers, I had a revelation: there was no quiche on the menu, and there should be. For many chemo (and other) patients, it is hard to get enough nutrition. People have low appetites, taste buds have gone haywire, mouths have sores in them. In general, eating is a chore. The typical solution is to offer these patients a liquid nutritional supplement such as Ensure or Boost, which packs a lot of carbs, protein, and fat into a small drinkable package. My personal experience, and I know this is true for others, is that these drinks are nauseatingly sweet. I can't drink them, especially with chemo mouth.
But cold quiche, on the other hand... loaded with carbs, protein, and fat; smooth and creamy; not sweet... perfect.
The next time my regular food service visitors stopped by, I pitched quiche as a menu addition. A nutritionist also stopped by — a weekly occurrence, I think — and I made the case for quiche to her, too. They all agreed it would be a good idea and said they would pass it on. One of my daily food service visitors also told me quiche is available in the staff cafeteria two mornings a week. Patients cannot order from the cafeteria in the morning, but she promised to bring me some personally. Which she did. (It was not as creamy as I think a quiche should be, but it was decent.)
Operation Quiche is not as significant as my previous Patients Need Better Food Campaign, but that's a great thing. When you are suggesting a single addition to the menu instead of arguing for a total overhaul, you're in a pretty good place.
And I have found the food service open to modifications. One common modification for me lately: the hummus appetizer with cucumbers, carrots, and pita chips, substituting extra cucumbers for the carrots and pita chips.
There are two women with responsibility for two floors, and I think they stop by each room at least once a day to check in with the patients. I think one may be responsible for recording information about each patient, while the other one is focused on helping patients find items that may appeal to them, but they seem to ask similar questions and make similar suggestions. And there is an occasional phone call asking for my overall feedback on the service.
My feedback: I am very impressed with how thoroughly the hospital system has embraced the idea that eating well is a critical part of the patient experience.
(Ironically, as I write this, I have experienced my first delivery delay. We pretty consistently receive our order within 45 minutes, and tonight's dinner took 90 minutes to get here. Given the length of my current stay, that's still very good performance overall.)
On Sunday, Jan visited with some leftovers from the Champaign Thanksgiving dinner she and the boys had made on Friday. (I had joined via Skype, from a laptop sitting on a counter overlooking the dining room table.) These leftovers were much better than the Boston Market offerings we had shared on Thursday. My favorites were a cranberry chutney that Jan made, pumpkin cheesecake that Paul made, and a ham and gouda
While enjoying my leftovers, I had a revelation: there was no quiche on the menu, and there should be. For many chemo (and other) patients, it is hard to get enough nutrition. People have low appetites, taste buds have gone haywire, mouths have sores in them. In general, eating is a chore. The typical solution is to offer these patients a liquid nutritional supplement such as Ensure or Boost, which packs a lot of carbs, protein, and fat into a small drinkable package. My personal experience, and I know this is true for others, is that these drinks are nauseatingly sweet. I can't drink them, especially with chemo mouth.
But cold quiche, on the other hand... loaded with carbs, protein, and fat; smooth and creamy; not sweet... perfect.
The next time my regular food service visitors stopped by, I pitched quiche as a menu addition. A nutritionist also stopped by — a weekly occurrence, I think — and I made the case for quiche to her, too. They all agreed it would be a good idea and said they would pass it on. One of my daily food service visitors also told me quiche is available in the staff cafeteria two mornings a week. Patients cannot order from the cafeteria in the morning, but she promised to bring me some personally. Which she did. (It was not as creamy as I think a quiche should be, but it was decent.)
Operation Quiche is not as significant as my previous Patients Need Better Food Campaign, but that's a great thing. When you are suggesting a single addition to the menu instead of arguing for a total overhaul, you're in a pretty good place.
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