Not much to report today: read some NEJMs and JAMAs nothing earth shattering and did a lot of napping. I went outside for a short walk (shorter than around the block even) with Tommie who came to visit me and had no fevers. My ANC was 230 with 500 being the magic number. My platelets and red count are holding so I don't think I'm going to need anything more there.
I ate three squares, got several cards and played sudoku. Very pleasant, very normal, not all that interesting, but please do not take that as a complaint!
I am hoping for an ANC above 500 for tomorrow for me so I can go home. Hopefully your ANC is in place so I am not sure what specifically to hope for for you, but you know: may your dearest hope come true.
Friday, October 5, 2012
Thursday, October 4, 2012
Day 105 - Agnes Day
So, medically the third day I was here was similar to the first two, slightly lower fevers, 102 instead of 103, 104, slight waking up, eating a tiny bit. People were starting to be a little worried because I had been on the correct antibiotic now for 72 hours and was still having big fevers. All my cultures were negative, however, so maybe I was just really good at getting fevers? The other worry, of course, was that there was a second infection we were not treating or that there was a hidden pocket of the first infection somewhere. For now, however, my fevers were definitely down compared to the previous two days, where each day the high temp went down a degree and I was becoming awake and interactive for longer each day so those were both hard to argue with. The day was spent like the others, left, right, left, right, awake a while, left, right.
I'm not sure exactly which night it was that Agnes Day came to visit me, but I'm going to put it here as it was no later than this night.
For people who find other people's dreams tiresome, skip the rest, but I think this is really one of the most interesting things to happen to me in a long time.
I was at friend's house party sitting on a deck with a bunch of other people and this very elderly and beatup basset hound squeezed up on the planking next to me. Her skin was really bad, like she had a collar that had eaten partway into her neck and she had a tumor sticking out the front of her chest. I petted the top of her head as it was the least unappetizing part and said, "Hello. What's your name?"
"Agnes Day."
"What a great name."
"Thanks. I gave it to myself. People have given me other names, but I've been living on my own for 2 years now so I figure I can name myself."
I touched the tumor on her chest, "What's this?"
"I don't know, but it's sure makes it hard to breathe." "So, what's the deal? I've never met a talking dog before."
"O, there are lots of us. We only talk to people we trust. I trust you. In fact, I'd like to live with you." "Well, I don't know about that. My husband wasn't that thrilled about getting the dog we have now."
"I think he'll agree. I mean, I'm 16; I won't live long and all I really want to do is curl up on the corner of your couch--you do have a couch?" I nod. "Good. And I'll eat your other dog's kibble."
"Well, Agnes Day, let's take you to the shelter--""No way! I don't want to go there! I'm not going there! I thought you were a nice person, but I can see--"
"Agnes, the shelter is just where the low cost vets are. They'll help us get you fixed up. We'll take you to the regular vet for regular stuff, but they wouldn't know how to help you now."
lots of OK's mixed with grumbling.
The vet confirmed that she was, in fact, 16 and removed the tumor telling us it was a cholesteatoma and that it might come back but she could remove it again and again. Agnes is much better appearing at this part of the dream and is even cleaned. I don't think there's any more after this.
She appears once later in the week again for a talk with me which I will tell you about when I get there, and once just very briefly where either last night or the night before, she showed up in some other dream and asked me to thank Terry for all the good kibble he was feeding her.
Is this supposed to mean that my spirit animal is a hyper Catholic, decrepit, talking, bassett hound? Don't other people get animals like wolves and eagles? On the other hand, she is charming and polite and kind of funny. And, as you'll see, she gives good advice.
I'm not sure exactly which night it was that Agnes Day came to visit me, but I'm going to put it here as it was no later than this night.
For people who find other people's dreams tiresome, skip the rest, but I think this is really one of the most interesting things to happen to me in a long time.
I was at friend's house party sitting on a deck with a bunch of other people and this very elderly and beatup basset hound squeezed up on the planking next to me. Her skin was really bad, like she had a collar that had eaten partway into her neck and she had a tumor sticking out the front of her chest. I petted the top of her head as it was the least unappetizing part and said, "Hello. What's your name?"
"Agnes Day."
"What a great name."
"Thanks. I gave it to myself. People have given me other names, but I've been living on my own for 2 years now so I figure I can name myself."
I touched the tumor on her chest, "What's this?"
"I don't know, but it's sure makes it hard to breathe." "So, what's the deal? I've never met a talking dog before."
"O, there are lots of us. We only talk to people we trust. I trust you. In fact, I'd like to live with you." "Well, I don't know about that. My husband wasn't that thrilled about getting the dog we have now."
"I think he'll agree. I mean, I'm 16; I won't live long and all I really want to do is curl up on the corner of your couch--you do have a couch?" I nod. "Good. And I'll eat your other dog's kibble."
"Well, Agnes Day, let's take you to the shelter--""No way! I don't want to go there! I'm not going there! I thought you were a nice person, but I can see--"
"Agnes, the shelter is just where the low cost vets are. They'll help us get you fixed up. We'll take you to the regular vet for regular stuff, but they wouldn't know how to help you now."
lots of OK's mixed with grumbling.
The vet confirmed that she was, in fact, 16 and removed the tumor telling us it was a cholesteatoma and that it might come back but she could remove it again and again. Agnes is much better appearing at this part of the dream and is even cleaned. I don't think there's any more after this.
She appears once later in the week again for a talk with me which I will tell you about when I get there, and once just very briefly where either last night or the night before, she showed up in some other dream and asked me to thank Terry for all the good kibble he was feeding her.
Is this supposed to mean that my spirit animal is a hyper Catholic, decrepit, talking, bassett hound? Don't other people get animals like wolves and eagles? On the other hand, she is charming and polite and kind of funny. And, as you'll see, she gives good advice.
Day 110 - pretty much normal hospital normalcy
Today's big activity was that I took a shower by myself -- sitting down, but without supervision. It felt nice to be cleanish although I can't seem to scrub all the sweat/salt/whatever combination off completely and have some little white patches on a few high spots. I also put on clothes rather than a johnny after my shower so that is exciting and did sudoku for the first time since the half done one left on my computer from Thursday. My life is really pretty dull now: blog, sleep, eat, generally goof around, sleep, eat, etc. One of the volunteers came by as a person (rather than a volunteer as it's not his day) to drop off a book he wanted me to have, "Beautiful Swimmers." I read a few chapters and am enjoying it. It's about the Chesapeake Bay and the crabbing industry. Lots of nice people have called me to check in on me, see how I'm doing, make sure I'm not bored or lonely and I got a get well card from HHH. Thanks, everyone!
My numbers are looking up with an ANC of 60 and platelets of did they say 17? 23? somewhere around there. No more fevers and we're just waiting for that ANC to climb above 500 so I can go home.
I hope your day was as positive as mine and less busy if you don't like visitors or more busy if you do. I'll be happy with a loose replication of today for me, if something similar would suit your tastes, I hope we all get it. If you were hoping for something different, I hope it comes tomorrow.
My numbers are looking up with an ANC of 60 and platelets of did they say 17? 23? somewhere around there. No more fevers and we're just waiting for that ANC to climb above 500 so I can go home.
I hope your day was as positive as mine and less busy if you don't like visitors or more busy if you do. I'll be happy with a loose replication of today for me, if something similar would suit your tastes, I hope we all get it. If you were hoping for something different, I hope it comes tomorrow.
Day 104 - the misery continues
So, let's describe a day in more detail. I start on one side and whenever I wake, flip to the other side and go back to sleep. The kinds of things that might wake me are LNA's coming in to take vitals, doctors, residents or students rouding, nurses delivering medicine for me to swallow or to hang for infusions, nurses a/o LNA's doing their hourly roundings, any of the various medicines infusing running out or getting air bubbles. Then there was my body's own cycle: comfortable, feeling cold, temperature going up, rigors either a few or a lot until the temperature is where my body was going with it, call the nurse can I have more tylenol? (can't have anything else due to no platelets), when I'm at my body's goal, I go back to sleep, then waken when my body decides it's time to go down with the temperature. At that point I feel hot, sweaty and remove the blankets, then soon I feel cold and start shaking, press the call button and start the cycle again. This was pretty much all I did for three days. I think by Sunday I was starting to have moment that were not devoted to fevers, but I think all of Thursday, Friday and Saturday as well as most of Sunday were pretty much as described above.
Diane came and spent Sunday with me. I think scattered through the whole day we probably managed an hour of conversation. She got me to eat a bowl of soup which was good. Most of the day, however, was spent in rigoring. You may not know what rigoring is: Merriam-Webster calls it "a tremor caused by a chill." This is like a lion is "a cat that weighs under ten pounds and has its eyelids fused shut." For me, rigors involved a rapid shaking of my entire body including my jaw, I can concentrate on making the shaking stop and can sometimes gets one or more limb to stop by thinking about it, but then it will then almost vibrate. I get short of breath and breathe deeply and loudly and exhale against my teeth, my head starts to hurt. That goes on for a while and then stops when my body has decided I am done. This activity--rigoring--was what I did non-stop pretty much for four days. I bet you won't be surprised to learn that I was sore when it all stopped, like I couldn't move myself around in bed sore, couldn't walk by myself sore. My TMJ on the left only (?) was so bad it could keep me from sleeping.
It turns out there is a med that can keep people from rigoring but too much of it gives you hallucinations and seizures. Those are things I'd like to avoid! On the other hand, rigors are not completely benign. The very people who could benefit most from control of rigors (those of us with constant rigors) are the ones who are at most risk of side effects. I did get demerol starting around Monday and it was so nice, but I wish I had gotten it sooner and possibly had fewer muscle aches and less TMJ. It's a hard balance, but I did not really understand before I had my own experience with it that rigors are not just an annoyance to the patient, that they can have some longer lasting effects.
I wish those with control over me had understood all the effects of their actions better. I hope those with control over you can see the effects of their actions well and that you are fully aware of those effects on the people you have control over.
Diane came and spent Sunday with me. I think scattered through the whole day we probably managed an hour of conversation. She got me to eat a bowl of soup which was good. Most of the day, however, was spent in rigoring. You may not know what rigoring is: Merriam-Webster calls it "a tremor caused by a chill." This is like a lion is "a cat that weighs under ten pounds and has its eyelids fused shut." For me, rigors involved a rapid shaking of my entire body including my jaw, I can concentrate on making the shaking stop and can sometimes gets one or more limb to stop by thinking about it, but then it will then almost vibrate. I get short of breath and breathe deeply and loudly and exhale against my teeth, my head starts to hurt. That goes on for a while and then stops when my body has decided I am done. This activity--rigoring--was what I did non-stop pretty much for four days. I bet you won't be surprised to learn that I was sore when it all stopped, like I couldn't move myself around in bed sore, couldn't walk by myself sore. My TMJ on the left only (?) was so bad it could keep me from sleeping.
It turns out there is a med that can keep people from rigoring but too much of it gives you hallucinations and seizures. Those are things I'd like to avoid! On the other hand, rigors are not completely benign. The very people who could benefit most from control of rigors (those of us with constant rigors) are the ones who are at most risk of side effects. I did get demerol starting around Monday and it was so nice, but I wish I had gotten it sooner and possibly had fewer muscle aches and less TMJ. It's a hard balance, but I did not really understand before I had my own experience with it that rigors are not just an annoyance to the patient, that they can have some longer lasting effects.
I wish those with control over me had understood all the effects of their actions better. I hope those with control over you can see the effects of their actions well and that you are fully aware of those effects on the people you have control over.
Wednesday, October 3, 2012
Day 103 - the horror begins
The day started normally enough at our house: I drove Ellie to school, we jumped in Terry's car and stopped at Starbuck's then proceeded to the Manch NCCC just as we've done a dozen times before. I had felt you may recall as though I were going to get a fever and checked way more than usual--always 99something. At the NCCC, my vitals were fine, they drew my labs and about the time they came back to tell me I needed platelets, I was pretty sure I needed more than platelets. Upon recheck my temperature was 101.4 and we began discussing what to do with me. Dr. Manno really wanted me to stay in Manchester at CMC which makes it easier for the people who love me to see me, but also makes it a lot harder for me to be a patient. For one thing, I know it is very hard for some of the nurses to take care of me when I am in my AML baseline because I am their friend and they're sad to see me without hair, etc. taking care of me sick would be even harder. For another thing, I am somewhat disruptive (not on purpose, but just by virtue of knowing everyone) even though CMC is really good at patient confidentiality. The final issue was that I wanted to be able to whine and complain and wasn't entirely sure I could do that and then go back to work with the same people.
Dr. Manno decided that I could go to Lebanon and that I should wait to get my cultures and antibiotics there. He also thought that transport by Terry's car would be ok. I felt I wanted to get to antibiotics as soon as possible and that meant we should leave right then, but I saw a patient of mine at the elevator and I really did not want to explain to her and her brother in my current state what was going on. So we waited and in the meantime, the nurse got a hold of the doctor up north who wanted me to wait and get cultures and antibiotics in Manchester. Shuffle back to the room. I had just peed to prepare for the drive up north so there was a fair delay of antibiotics while I guzzled water so I could produce for them. Blood cultures were done, my production eventually happened and I got my antibiotics.
Then there was the issue of the platelets (remember those from the beginning of the story?). Well, it turns out that the only two packs of platelets in New England that would match me (or that they thought were likely to match me but they weren't sure yet) were in Dedham, MA. You might remember how with my previous consolidation it went really smoothly and I'd show up likely to need platelets and they'd have them pre-matched and ready to send to Manchester. I am not sure why that happened the first consolidation and not the second, but there you have it. About six hours into this, fevers are starting to come and go and I am starting to feel really lousy, Dr Hill calls and says they'd really like me to get the platelets in Manch if possible (my platelets were 2 and I would not survive a car accident, for example, at that level). He was trying to sort out where my platelets were, if the testing had been done or if we were having a transportation problem or what. Eventually it turned out the platelets were still in Dedham, not quite finished testing so Dr. Hill gave the ok for me to arrive in Lebanon, Dr. Manno agreed that I could go by ambulance and they ordered me up one.
I was feeling weak but ok when they loaded me up. I slept most of the way (foreshadowing: watch for this as a common activity), waking only twice when we changed speeds at interchanges to ask essentially "are we there yet?" When we got here, they wheeled me through the ED which I think must be about 100 acres big and through some back halls I don't recall ever seeing and to my beloved and familiar 1West. Either when I arrived or soon after my temperature did not register on one of the thermometers and was 104.5 on the other. The first night was spent rolling from the left side to the right and then the right to the left. The night float came in and tried to do an H and P on me, but I kept falling asleep on him. Around 9 o'clock they sent me down for the dreaded chest xray and even real tears did not keep them from making me do it, but I was so happy I could just fall apart over having to go down for a chest xray (in retrospect, I am happy. at the time, I just didn't want to do a chest xray.) Too bad: bundled up in the wheelchair, it was not the "coffee enema" transporter, swish swish swish through a million hallways, stand, breathe in, turn, etc. then do it in reverse. I was amazed when I asked that it was only 9 oclock. It felt to me like it had to be at least 3 in the morning. Left, right, left, right. The nigh float came in and told me that they had a partial ID on my bug and it was a "gram positive cocci in chains." He thought that there was some chance that the lab had misidentified the form of bacteria, especially so early on so he was going to add an antibiotic to cover "gram positive cocci in clusters"--vanco. This was probably exactly what I would have done, too. I was actually pretty amazing that my sample started growing something so fast. It meant that I must have had a huge bacterial load or a very fast growing bacteria or both. A few more left, rights and it really was three and I got my platelets and we'll leave Thursday about there.
Dr. Manno decided that I could go to Lebanon and that I should wait to get my cultures and antibiotics there. He also thought that transport by Terry's car would be ok. I felt I wanted to get to antibiotics as soon as possible and that meant we should leave right then, but I saw a patient of mine at the elevator and I really did not want to explain to her and her brother in my current state what was going on. So we waited and in the meantime, the nurse got a hold of the doctor up north who wanted me to wait and get cultures and antibiotics in Manchester. Shuffle back to the room. I had just peed to prepare for the drive up north so there was a fair delay of antibiotics while I guzzled water so I could produce for them. Blood cultures were done, my production eventually happened and I got my antibiotics.
Then there was the issue of the platelets (remember those from the beginning of the story?). Well, it turns out that the only two packs of platelets in New England that would match me (or that they thought were likely to match me but they weren't sure yet) were in Dedham, MA. You might remember how with my previous consolidation it went really smoothly and I'd show up likely to need platelets and they'd have them pre-matched and ready to send to Manchester. I am not sure why that happened the first consolidation and not the second, but there you have it. About six hours into this, fevers are starting to come and go and I am starting to feel really lousy, Dr Hill calls and says they'd really like me to get the platelets in Manch if possible (my platelets were 2 and I would not survive a car accident, for example, at that level). He was trying to sort out where my platelets were, if the testing had been done or if we were having a transportation problem or what. Eventually it turned out the platelets were still in Dedham, not quite finished testing so Dr. Hill gave the ok for me to arrive in Lebanon, Dr. Manno agreed that I could go by ambulance and they ordered me up one.
I was feeling weak but ok when they loaded me up. I slept most of the way (foreshadowing: watch for this as a common activity), waking only twice when we changed speeds at interchanges to ask essentially "are we there yet?" When we got here, they wheeled me through the ED which I think must be about 100 acres big and through some back halls I don't recall ever seeing and to my beloved and familiar 1West. Either when I arrived or soon after my temperature did not register on one of the thermometers and was 104.5 on the other. The first night was spent rolling from the left side to the right and then the right to the left. The night float came in and tried to do an H and P on me, but I kept falling asleep on him. Around 9 o'clock they sent me down for the dreaded chest xray and even real tears did not keep them from making me do it, but I was so happy I could just fall apart over having to go down for a chest xray (in retrospect, I am happy. at the time, I just didn't want to do a chest xray.) Too bad: bundled up in the wheelchair, it was not the "coffee enema" transporter, swish swish swish through a million hallways, stand, breathe in, turn, etc. then do it in reverse. I was amazed when I asked that it was only 9 oclock. It felt to me like it had to be at least 3 in the morning. Left, right, left, right. The nigh float came in and told me that they had a partial ID on my bug and it was a "gram positive cocci in chains." He thought that there was some chance that the lab had misidentified the form of bacteria, especially so early on so he was going to add an antibiotic to cover "gram positive cocci in clusters"--vanco. This was probably exactly what I would have done, too. I was actually pretty amazing that my sample started growing something so fast. It meant that I must have had a huge bacterial load or a very fast growing bacteria or both. A few more left, rights and it really was three and I got my platelets and we'll leave Thursday about there.
Day 109 - limping towards normalcy
I'm actually trying to concentrate my energy on the days earlier in the stay because they were more interesting in some ways than these days which are limping towards hospital normalcy. Dr Hill who is now my attending asked me which symptom was bothering me the worst and I couldn't decided. I'll categorize them for you:
1. left TMJ/ear pain - caused by five days of rigors. occasional zings related to position of the jaw, the pillow, my hands around my head, or the molecules in the room. interferes with sleeping, talking a little, eating a little. getting better slowly.
2. sore muscles - my legs and arms and stomach and back and neck muscles are all sore as though I've run a marathon I was unprepared for. This makes it hard to move around in bed or even get out of bed or to the bathroom. getting better nicely. I can walk independently today which is very nice.
3. fevers - the point of my being here and they keep making me feel terrible. Unfortunately the just discovered that I am 100.8 right now so they're really not gone, but very dimininished. The Neutrophilic Society recommends that people keep getting worked up until their fevers go away completely. I have had a cardiac echo and a CT of the chest, abdomen and pelvis recently. Dr. Hill was trying to talk me into getting an internal cardiac echo which gets a better view of the heart (one swallows the probe) and the infectious diseases doc would like to add stronger antifungal therapy. My worry is that no procedure is without consequences and it is a well known medical saying that the weaker the indication is for a procedure the more likely the patient is to have the side effects.
On the bright side, my ANC is 10 which means I am having some marrow recovery!
That's about it for today' offering. I am quite tired. Hopefully tonight I will be able to shed these miserable fevers and move closer to normalcy. I hope if you have something to shed, you are able to also.
1. left TMJ/ear pain - caused by five days of rigors. occasional zings related to position of the jaw, the pillow, my hands around my head, or the molecules in the room. interferes with sleeping, talking a little, eating a little. getting better slowly.
2. sore muscles - my legs and arms and stomach and back and neck muscles are all sore as though I've run a marathon I was unprepared for. This makes it hard to move around in bed or even get out of bed or to the bathroom. getting better nicely. I can walk independently today which is very nice.
3. fevers - the point of my being here and they keep making me feel terrible. Unfortunately the just discovered that I am 100.8 right now so they're really not gone, but very dimininished. The Neutrophilic Society recommends that people keep getting worked up until their fevers go away completely. I have had a cardiac echo and a CT of the chest, abdomen and pelvis recently. Dr. Hill was trying to talk me into getting an internal cardiac echo which gets a better view of the heart (one swallows the probe) and the infectious diseases doc would like to add stronger antifungal therapy. My worry is that no procedure is without consequences and it is a well known medical saying that the weaker the indication is for a procedure the more likely the patient is to have the side effects.
On the bright side, my ANC is 10 which means I am having some marrow recovery!
That's about it for today' offering. I am quite tired. Hopefully tonight I will be able to shed these miserable fevers and move closer to normalcy. I hope if you have something to shed, you are able to also.
Tuesday, October 2, 2012
unclear what day #, but otherwise oriented x 4
I am not sure how much endurance I will have this evening. I really am getting better each day, but am still not doing all that well. I got out of bed this morning and was sitting in the green chair when Terry and Ellie came by to surprise me. I think it was a mutual pleasant surprise. It had been my first attempt out of bed except to use the bathroom or go to a test since Thurday. I spent some nice time with them and then got a fever and went back to bed. I really am not supposed to be having fevers this late on so they are working them up pretty intensively. The Neutropenic Society has recommendation for what to make sure is not happening so today I got both sides of my port accessed and cultures drawn to make sure there's not a hidden source of bacteria there and then I got an echo to make sure there weren't any collections of bacteria on my heart. As the final trio for today I am getting a CT of the chest abdomen and pelvis to make sure I don't have a hidden abscess in there. The prep is not as bad as I thought it would be, but I'm guessing it's not as nutritious as the chicken patty, mashed potatoes and mac n cheese I had planned. It's very funny; the person running this incredible workup (the ID doctor) will tell me I don't really expect any of it to come back positive, but I've been surprised before.
LNA her for vitals and CT looming, this may be it for tonight. Another inelegant and incomplete but written by me post. May your work be elegant and complete.
LNA her for vitals and CT looming, this may be it for tonight. Another inelegant and incomplete but written by me post. May your work be elegant and complete.
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