Today was spent napping, walking, eating salmon fresh from cape cod, catching up on journals and doing a little grocery shopping.
I am trying simultaneously to rebuild the muscle I lost during my fever admissions and to recover from my two days of NHHPCO. It is a good thing I have a comfortable couch is all I have to say. Tommie loaned me some little powder puff weights and I fling them around for three reps and then it's time to give that poor muscle a break. I actually took tylenol for sore muscles rather than fever for the first time in ages.
So, you might wonder what my overall picture looks like. It's clear as mud is the problem. I'll tell you what I understand. I might actually be done with treatments. It's not clear if there is one more thing Dr. Hill may offer me or if I'm really done. When he was at a conference recently, he asked everyone with lots of experience whose opinion he really respected what they would do with a patient like me. They all felt it was a tough problem, but that they would do exactly the treatment I have had and then stop. They said they'd check the marrow registry to make sure there were some options in case the patient needed a transplant down the road. I'm not sure what they would do for a patient without marrow matches (hopefully I'll have some), but for some one with options, they'd stop.
There is one study out there with results we don't know. It is essentially comparing people who have had my treatment (3 chemos) with people who have had two chemos plus an auto transplant. If the auto transplant people have a big decrease in their rate of recurrence, it would probably be worth thinking about doing one for me even though they got two chemos plus auto and I would be getting three chemos plus auto. We are meeting with Dr Hill on Nov 28 to sort it out and make our definitive decision. Either way, I have to do the same thing now, try to rebuild muscle and grow red blood cells. It would certainly be exciting to be done, but on the other hand, I don't want to leave anything that could decrease my chance of recurrence undone.
So, as we head into Thanksgiving week, I have plenty to be thankful for and lots of hopes for the future. My needs have become so simple mostly; I am hoping for a good night's sleep for tonight yet again. You, I bet, are getting tired of that wish because you are way more interesting than me. What might you like most? a good cup of coffee? a nice conversation? an exciting weekend? Tonight, I am going to ask you to wish for yourself. Wish wisely, because you only get one per night.
Showing posts with label fever. Show all posts
Showing posts with label fever. Show all posts
Friday, November 16, 2012
Tuesday, November 13, 2012
Day 150 - she's outta here!
At 5:15 pm, my resident came in and said I could stay or go, it was up to me. I called Terry and he said he would come and get me so go it is. I'll see you in Exeter tomorrow and maybe at NHHPCO on Thursday.
Otherwise today was a very quiet day. I went for a short walk, had lots of nice visitors including Briane who gave me a leg massage which was just the ticket, given how sore they were from yesterday's exercise.
The marrow would like you to know the ANC was 980 today, platelets were 33 and the red cells were 7.5. "Satisfied, now? I hope so. Geez." I'm actually hoping for a little more recovery in the red cells making department, but I don't think this is the time to mention it.
For me, tonight I'm hoping for safe travels. For you, safe travels if you are travelling and if not I'll hope for interesting stay-at-home-ness.
Otherwise today was a very quiet day. I went for a short walk, had lots of nice visitors including Briane who gave me a leg massage which was just the ticket, given how sore they were from yesterday's exercise.
The marrow would like you to know the ANC was 980 today, platelets were 33 and the red cells were 7.5. "Satisfied, now? I hope so. Geez." I'm actually hoping for a little more recovery in the red cells making department, but I don't think this is the time to mention it.
For me, tonight I'm hoping for safe travels. For you, safe travels if you are travelling and if not I'll hope for interesting stay-at-home-ness.
Monday, November 12, 2012
Day 149 - the reading, the echo, the marrow
First, the marrow's news. "I have fully woken up and have produced 380 neutrophils per whatever unit they measure in the lab. This is a jump of 280 and more than trebling of my last production. I am also producing platelets for 27 and red cells for a total of 8.3. I hope you are satisfied."
I had an echo today because of the potential GPCs and my mitral regurge and it was fine.
The final news is that I did my reading this evening. I felt somewhat silly because I had to take my IV pole, but also feel it gave me more credibility as a sick person. People laughed at the right times and seemed to like it. The only problem was that my computer failed on the third page and that was sort of a huge disruption. Lesson learned: always use paper. So, I'm 48 and learning these things that everyone else knows. I guess it's better than learning them at 58. I really liked a lot of the other people's work. It was all very different. Two other people did "creative non-fiction": one a memoir of growing up on a farm maybe 60-70 years ago (he talks about haying with horses) and one a very well done take on the "be sure to take time to smell the roses" thought. You can see from that how varied the program was.
The first half took twice as long as I expected it to so I decided to leave and go back to my room because it was 1.5 hours later and I had estimated 45 minutes. I knew Dr Hill was rounding and didn't want to miss him, like if he finished and went home to well earned rest. I also didn't want the evening nurse to worry about me. And maybe I was getting a little tired. I know now I am really looking forward to bed. I am sorry I couldn't stay for the whole thing. Next year, I'll be stronger and have normally functioning bone marrow (knock on wood) so will have better endurance.
Don't forget tomorrow if you are in Exeter or can get there easily to go to Patrick's reading at Water Street Books. Here is a recipe for a cheap, fun date. Go to Exeter, arriving at 6. Have dinner at the Green Bean or Loaf and Ladle (either place will put you back about $20 for 2), then walk two very pedestrian friendly blocks down the street to Water Street Books and hear Patrick read. For desert, continue down the street another block or two to the end to Stillwell's ice cream, get a cone, then promenade down the Swazey Parkway while eating it, admiring the lights and quiet and maybe even smooching once or twice if you're with your sweetie. A great evening for under $30 unless you buy a copy of the book (who wouldn't?) then under $40.
Tomorrow I am hoping the marrow will have more news that involves the number 500 for me. For you, I hope a creative endeavor you are really proud of that you get to share, not necessarily tomorrow, but sometime.
I had an echo today because of the potential GPCs and my mitral regurge and it was fine.
The final news is that I did my reading this evening. I felt somewhat silly because I had to take my IV pole, but also feel it gave me more credibility as a sick person. People laughed at the right times and seemed to like it. The only problem was that my computer failed on the third page and that was sort of a huge disruption. Lesson learned: always use paper. So, I'm 48 and learning these things that everyone else knows. I guess it's better than learning them at 58. I really liked a lot of the other people's work. It was all very different. Two other people did "creative non-fiction": one a memoir of growing up on a farm maybe 60-70 years ago (he talks about haying with horses) and one a very well done take on the "be sure to take time to smell the roses" thought. You can see from that how varied the program was.
The first half took twice as long as I expected it to so I decided to leave and go back to my room because it was 1.5 hours later and I had estimated 45 minutes. I knew Dr Hill was rounding and didn't want to miss him, like if he finished and went home to well earned rest. I also didn't want the evening nurse to worry about me. And maybe I was getting a little tired. I know now I am really looking forward to bed. I am sorry I couldn't stay for the whole thing. Next year, I'll be stronger and have normally functioning bone marrow (knock on wood) so will have better endurance.
Don't forget tomorrow if you are in Exeter or can get there easily to go to Patrick's reading at Water Street Books. Here is a recipe for a cheap, fun date. Go to Exeter, arriving at 6. Have dinner at the Green Bean or Loaf and Ladle (either place will put you back about $20 for 2), then walk two very pedestrian friendly blocks down the street to Water Street Books and hear Patrick read. For desert, continue down the street another block or two to the end to Stillwell's ice cream, get a cone, then promenade down the Swazey Parkway while eating it, admiring the lights and quiet and maybe even smooching once or twice if you're with your sweetie. A great evening for under $30 unless you buy a copy of the book (who wouldn't?) then under $40.
Tomorrow I am hoping the marrow will have more news that involves the number 500 for me. For you, I hope a creative endeavor you are really proud of that you get to share, not necessarily tomorrow, but sometime.
Sunday, November 11, 2012
Day 148 - the marrow returns
Great day today. ANC of 100! triple digits for the first time in like 10 days. It feels so good. I left my room for the first time this admission and walked around the station several times. It went well. Then, with my friend Eva (please note I would not do this alone at this point), I went to the fifth floor and did a lap of my usual long walk successfully. I didn't want to do more because I felt a little tired. I probably could have pushed more, but really why would I at this point?
Other news: I was unmaking my bed this morning so the aides could make it and I needed to rest afterward and breathe hard so they gave me a unit of blood even though at 7.1 I was not officially ready for a transfusion. Phew! that also contributed to giving me a nice day. My platelets are 13 which might mean that my platelet machinery is waking up, more excitement. I am not sure, but I think my last big fevers were close to 24 hours away and I only had one little fever today. This afebrile day brought to you by your local neutrophil.
I had two visitors: Rob in the morning, Eva in the afternoon, separated by a two hour nap, lunch and some misc goofing around on the computer. I had fun with both of them. Rob brought his really cool version of a tic tac toe game that he invented--that he got a celebrity endorsement from Will Shortz "best tic tac toe like game I've seen" or something similar. Cool, huh? Eva brought Sanpellegrino water which is so nice to mix with regular water when you are getting really sick of regular water, but nothing else really sounds good.
I am hoping tonight for nothing more than a good night's afebrile sleep. That seems a modest wish for you, but for the day before the workweek (unless you get Vet's day off), it's not a bad wish so I hope you all have good afebrile night's sleeps (except for those of you working over night, but especially those of you on call overnight).
Other news: I was unmaking my bed this morning so the aides could make it and I needed to rest afterward and breathe hard so they gave me a unit of blood even though at 7.1 I was not officially ready for a transfusion. Phew! that also contributed to giving me a nice day. My platelets are 13 which might mean that my platelet machinery is waking up, more excitement. I am not sure, but I think my last big fevers were close to 24 hours away and I only had one little fever today. This afebrile day brought to you by your local neutrophil.
I had two visitors: Rob in the morning, Eva in the afternoon, separated by a two hour nap, lunch and some misc goofing around on the computer. I had fun with both of them. Rob brought his really cool version of a tic tac toe game that he invented--that he got a celebrity endorsement from Will Shortz "best tic tac toe like game I've seen" or something similar. Cool, huh? Eva brought Sanpellegrino water which is so nice to mix with regular water when you are getting really sick of regular water, but nothing else really sounds good.
I am hoping tonight for nothing more than a good night's afebrile sleep. That seems a modest wish for you, but for the day before the workweek (unless you get Vet's day off), it's not a bad wish so I hope you all have good afebrile night's sleeps (except for those of you working over night, but especially those of you on call overnight).
Saturday, November 10, 2012
Day 147 - the marrow wakes up!
So today I woke up to a note from my night nurse than my ANC was 20. This is incredibly good news. Even better, the fellow wanted to recheck my platelets (8) because I think he didn't want to transfuse me and in the afternoon, he was happy because they were 11 and I was happy because my ANC was 40! I don't think it's unreasonable to hope for 80 or maybe even triple digits tomorrow. This is what I really need to make the stupid fevers go away so grow, grow, grow little marrow garden!
As for the fevers, 102.6 seems to have been my max today, a little lower than 103. I let one escape in the early afternoon to see how high it would go and most annoyingly, it will not come down, hours later, I am still 102. Arg! I don't really feel bad; in fact, I keep feeling like it's coming down, I get super hot, and it just doesn't do much.
In other news, Terry came to visit me in the morning and Ana and Shelley came to visit me in the afternoon. Nice chit-chats were had.
The worst part of today was that for my platelet recheck, my port seemed very sluggish. No on felt it was the port, because it has always worked wonderfully (thank you, Dr Mahon!) and since it had been accessed in the ED with a type of needle that they stopped using here because it fails so frequently, everyone felt it was the needle. My afternoon nurse tried to draw blood cultures--it would not allow a single red blood cell to leave after the first tube which took about five minutes. So, IV nurse, reaccess. She accessed both sides and it works (surprise!) perfectly. I suggested to the nurses that they have their supervisor write or call CMC (and all the other hospitals that send them very many patients) because there is no way the ED would know that that particular needle was prone to failure because it doesn't fail in the first 8 or 10 hours, it takes a few days. Hopefully, no one spends a few days in the ED!
The other news is that a few days ago, when I had one of my nearly infinite set of blood cultures, one of two bottle came back positive for coag negative GPCs. The doctors in the audience know this is probably a contaminant, but because I was still having fevers, they decided, wisely, I think, to cover me for it. Of course, it didn't come back initially as coag negative, so they wanted to cover MRSA. uh-oh. I bet you remember what happens with vanco. I was actually a very good sport and said I would try it if they wanted, but they decided they did not want and put me on daptomycin. I know absolutely nothing about daptomycin except that it is given once / day and does not seem to cause any side effects in addition to the zosyn I'm already on. I like both of those features. Terry says not only do I have princess blood, but I require princess antibiotics now. As soon as the other bottle comes back final with no growth, they'll stop it.
I wish I understood why I am still having fevers on zosyn and daptomycin. It seems like I should be pretty well sterilized--OK, I just wikipedia'd it. It is active against some GP's, in particular MRSA (which I find it hard to think I have--given that one culture is coag negative and one is growing nothing--for me to have MRSA, two mistakes would have had to be made in the lab or two "one of those things" events would have had to happen simultaneously). Ooo, more googling and the Merck Manual says that not all enterobacter are susceptable to zosyn or ceftaz. Geez! It's a riot sometimes to be a doctor with a big diagnosis. I really don't want my doctors to think I'm second guessing them (or to be embarrassed), but I really want these dumb fevers to go away. I'll have to stew on this tonight.
Well, I am hoping for three things overnight, wisdom, white cells and afebrileness. Do you think it's too greedy? I hope not. For you, I will wish for the trio that I think makes a good doctor "wise, kind and smart." For those of you who are not doctors, I think they are still a great trio and actually hope we all find ourselves with these qualities.
As for the fevers, 102.6 seems to have been my max today, a little lower than 103. I let one escape in the early afternoon to see how high it would go and most annoyingly, it will not come down, hours later, I am still 102. Arg! I don't really feel bad; in fact, I keep feeling like it's coming down, I get super hot, and it just doesn't do much.
In other news, Terry came to visit me in the morning and Ana and Shelley came to visit me in the afternoon. Nice chit-chats were had.
The worst part of today was that for my platelet recheck, my port seemed very sluggish. No on felt it was the port, because it has always worked wonderfully (thank you, Dr Mahon!) and since it had been accessed in the ED with a type of needle that they stopped using here because it fails so frequently, everyone felt it was the needle. My afternoon nurse tried to draw blood cultures--it would not allow a single red blood cell to leave after the first tube which took about five minutes. So, IV nurse, reaccess. She accessed both sides and it works (surprise!) perfectly. I suggested to the nurses that they have their supervisor write or call CMC (and all the other hospitals that send them very many patients) because there is no way the ED would know that that particular needle was prone to failure because it doesn't fail in the first 8 or 10 hours, it takes a few days. Hopefully, no one spends a few days in the ED!
The other news is that a few days ago, when I had one of my nearly infinite set of blood cultures, one of two bottle came back positive for coag negative GPCs. The doctors in the audience know this is probably a contaminant, but because I was still having fevers, they decided, wisely, I think, to cover me for it. Of course, it didn't come back initially as coag negative, so they wanted to cover MRSA. uh-oh. I bet you remember what happens with vanco. I was actually a very good sport and said I would try it if they wanted, but they decided they did not want and put me on daptomycin. I know absolutely nothing about daptomycin except that it is given once / day and does not seem to cause any side effects in addition to the zosyn I'm already on. I like both of those features. Terry says not only do I have princess blood, but I require princess antibiotics now. As soon as the other bottle comes back final with no growth, they'll stop it.
I wish I understood why I am still having fevers on zosyn and daptomycin. It seems like I should be pretty well sterilized--OK, I just wikipedia'd it. It is active against some GP's, in particular MRSA (which I find it hard to think I have--given that one culture is coag negative and one is growing nothing--for me to have MRSA, two mistakes would have had to be made in the lab or two "one of those things" events would have had to happen simultaneously). Ooo, more googling and the Merck Manual says that not all enterobacter are susceptable to zosyn or ceftaz. Geez! It's a riot sometimes to be a doctor with a big diagnosis. I really don't want my doctors to think I'm second guessing them (or to be embarrassed), but I really want these dumb fevers to go away. I'll have to stew on this tonight.
Well, I am hoping for three things overnight, wisdom, white cells and afebrileness. Do you think it's too greedy? I hope not. For you, I will wish for the trio that I think makes a good doctor "wise, kind and smart." For those of you who are not doctors, I think they are still a great trio and actually hope we all find ourselves with these qualities.
Friday, November 9, 2012
Day 146 - slowly better/updated
Today I spent three separate sessions of 2 or 3 hours out of bed, whereas yesterday I think I only got one hour in. I had big fevers last night (103), but my highest today was 100.5. So, I'm for sure getting better! Also, they added a new antibiotic to my regimen. Unfortunately, I planned badly and am exhausted and this is the whole blog post I have in me at this point. I hope we all have a good feverless night!
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OK, it's Saturday afternoon and I will do the blog post I would have done yesterday if I hadn't run out of steam (unless I run out of steam again). I ended up with more fevers last night (103) so I guess I was prematurely happy. This time I'm not getting rigors and I think at least some of it is because I have learned how not to have rigors. Right from the beginning, I have been able to turn off one limb at a time, but now I seem to be able to keep everything from shaking, but not from tensing. So I have to cycle around R leg, L leg, L arm, R arm, back, neck, shoulders, chest, stomach, R leg, L leg, etc. each time consciously relaxing the muscles in the area. By the time I come back, they are tensed again and we just keep cycling. It's very relaxing and actually kind of fun to see how sneaky my body can be when I'm paying attention to another part. Eventually, I get up to the temperature my brain was aiming for and we're done or more commonly, I fall asleep and don't know what happens then.
I should mention that the whole fever cycle starts with migratory goosebumps which would be kind of fun if I didn't know what was coming. They will sweep up one or both arms and then my back and then maybe one leg, my neck, my head, then maybe an arm, a leg, totally random. Usually I ask for tylenol at this point, because I recognize what is coming, but not always because if I constantly take tylenol, no one will know how high my fevers are. Then we do the non-rigor thing, then I am feverish (and almost always asleep). Even during the day, if I'm not taking tylenol, once I have the moving goosebumps, I get into bed. Then when I wake up, I'm incredibly hot, and I stick my feet out of the covers, then body part by body part lower the covers, then I start sweating furiously. I usually fall asleep again here, then wake up in a wet johnny and wet bed at some point in the future. Sometimes I sleep well enough that it's all evaporated by the time I wake up, sometimes not. It feels good to wash my face in the morning! I usually do about two fevers per day and tylenol the rest away, but without tylenol, I think I would be peaking about every 3-4 hours still. Kind of tiresome, but when I came in, I was having big fevers through the tylenol so this is for sure progress.
The thing that's not going so well is my GI system. The antibiotics are doing their typical havoc wreaking on my guts and it makes me really resistant to eating. Eating has not been my strong suit since my diagnosis so this is really not helpful. I am currently in isolation for "rule out c diff" which I (and everyone else) really think I do not have, but my co-unit residents are so fragile that there is no way they can not put me in isolation. What are the symptoms of c diff? exactly what I have. I think the results will come back Sunday afternoon.
That's what I think I had to tell you for Friday.
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OK, it's Saturday afternoon and I will do the blog post I would have done yesterday if I hadn't run out of steam (unless I run out of steam again). I ended up with more fevers last night (103) so I guess I was prematurely happy. This time I'm not getting rigors and I think at least some of it is because I have learned how not to have rigors. Right from the beginning, I have been able to turn off one limb at a time, but now I seem to be able to keep everything from shaking, but not from tensing. So I have to cycle around R leg, L leg, L arm, R arm, back, neck, shoulders, chest, stomach, R leg, L leg, etc. each time consciously relaxing the muscles in the area. By the time I come back, they are tensed again and we just keep cycling. It's very relaxing and actually kind of fun to see how sneaky my body can be when I'm paying attention to another part. Eventually, I get up to the temperature my brain was aiming for and we're done or more commonly, I fall asleep and don't know what happens then.
I should mention that the whole fever cycle starts with migratory goosebumps which would be kind of fun if I didn't know what was coming. They will sweep up one or both arms and then my back and then maybe one leg, my neck, my head, then maybe an arm, a leg, totally random. Usually I ask for tylenol at this point, because I recognize what is coming, but not always because if I constantly take tylenol, no one will know how high my fevers are. Then we do the non-rigor thing, then I am feverish (and almost always asleep). Even during the day, if I'm not taking tylenol, once I have the moving goosebumps, I get into bed. Then when I wake up, I'm incredibly hot, and I stick my feet out of the covers, then body part by body part lower the covers, then I start sweating furiously. I usually fall asleep again here, then wake up in a wet johnny and wet bed at some point in the future. Sometimes I sleep well enough that it's all evaporated by the time I wake up, sometimes not. It feels good to wash my face in the morning! I usually do about two fevers per day and tylenol the rest away, but without tylenol, I think I would be peaking about every 3-4 hours still. Kind of tiresome, but when I came in, I was having big fevers through the tylenol so this is for sure progress.
The thing that's not going so well is my GI system. The antibiotics are doing their typical havoc wreaking on my guts and it makes me really resistant to eating. Eating has not been my strong suit since my diagnosis so this is really not helpful. I am currently in isolation for "rule out c diff" which I (and everyone else) really think I do not have, but my co-unit residents are so fragile that there is no way they can not put me in isolation. What are the symptoms of c diff? exactly what I have. I think the results will come back Sunday afternoon.
That's what I think I had to tell you for Friday.
Thursday, November 8, 2012
Day 145 - up, down, up, down
Today was not my favorite day. I had a lot of fevers, some very mild rigors and was generally exhausted. I did get a unit of blood which made my headache go away and made me feel a little bit more energetic. Then, the best news of all, at the end of the day, they switched my antibiotic (to zosyn) so hopefully this will work better. What I really need are neutrophils and currently, I have zero still. I think my marrow has been pretty beat up by the chemo.
If you are coming to the reading on Monday in Lebanon, it is at 6. I should warn you that if I get discharged on Sunday, I may not feel like making the trek back up here. Check the blog to make sure I'm reading before you make the trek if you are coming just to hear me read. I think discharge on Sunday is a very unlikely scenario; going from 0 to 500 in three days would be the work of healthy marrow, not marrow that has three doses of HIDAC behind it, but we'll see.
I still feel completely without energy, charm or wit, but at least I have been out of bed to the chair twice today. This is a big improvement over yesterday where it was zero.
Here is a really nice picture of Ellie snuggled under the blanket I made:
I am so hopeful that the new antibiotic will work better and get rid of my fevers. For you, I hope for the ability and will to change courses when needed.
If you are coming to the reading on Monday in Lebanon, it is at 6. I should warn you that if I get discharged on Sunday, I may not feel like making the trek back up here. Check the blog to make sure I'm reading before you make the trek if you are coming just to hear me read. I think discharge on Sunday is a very unlikely scenario; going from 0 to 500 in three days would be the work of healthy marrow, not marrow that has three doses of HIDAC behind it, but we'll see.
I still feel completely without energy, charm or wit, but at least I have been out of bed to the chair twice today. This is a big improvement over yesterday where it was zero.
Here is a really nice picture of Ellie snuggled under the blanket I made:
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| She looks pretty comfy! |
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| Ellie is cutting the blanket off the loom. |
Wednesday, November 7, 2012
Day 144 - drat
Well, the fever did return, right at 8 pm, I hit 100.6 and went to CMC's ED. They did the workup, gave me ceftaz and sent me in an ambulance up to Lebanon. Up here, I have been doing well, with excursions to 103 (as always, I believe if you are going to do something, you should do it well). My hemoglobin was back down in the low 6's--I am not sure where I am losing it, but am getting a transfusion now. I got a fever during the first transfusion so we had to stop after only about 80 cc's. I have spent most of the day asleep, but have been able to have coherent conversations and had several of my usual Lebanon visitors and have been with it enough to enjoy talking with them. This neutropenic fever admission is so much nicer than the last one! I am nowhere near as sick and am very grateful.
Just like the last admission, however, I did get positive blood cultures within twelve hours. Last time it was gram positive. This time it's gram negative rods which come from the GI tract typically--not sure exactly where they came from, but the ceftaz is quite successful at encouraging them to go away.
That's about it for today's post. I wanted you to know I'm back in Lebanon, but much better than last time. I suspect I'll be here through the weekend, although a gal can hope.
I am hoping for a quick end to my fevers and a return to my nice home life for me. For you, I hope your obstacles stand aside and you can get done what you need to.
Just like the last admission, however, I did get positive blood cultures within twelve hours. Last time it was gram positive. This time it's gram negative rods which come from the GI tract typically--not sure exactly where they came from, but the ceftaz is quite successful at encouraging them to go away.
That's about it for today's post. I wanted you to know I'm back in Lebanon, but much better than last time. I suspect I'll be here through the weekend, although a gal can hope.
I am hoping for a quick end to my fevers and a return to my nice home life for me. For you, I hope your obstacles stand aside and you can get done what you need to.
Sunday, October 7, 2012
Day 113 - tortured by her own marrow
So, I guess my marrow is getting back at me for all the poison I've poured into it. My ANC is *still* stuck at 200. Dr. Hill thinks it may be a med side effect and has switched me to the antibiotic (ceftriaxone) I'll be taking at home anyway and stopped zosyn (started to replace ceftaz when I was still spiking fevers and the docs thought--I never thought--that I might have an oral infection). Anyway, I have had another day of no fevers and not much else either.
Fortunately Tommie came to visit me and told me stories about her beautiful new apartment with huge shiny wooden floors and how Ellie slid around and how happily she and Kita explored the nooks and storage areas together. We had a nice time, ate lunch and looked a few photos. She had to leave woefully early as it is a three hour round trip drive.
I also walked some: up a flight of stairs, about a half mile all told, then down two flights of stairs. I was beginning to be aware of working at this point, but not feeling exhausted so I'm getting stronger and more endurant every day. (ok, smarty pants, what is the adjective for "having endurance"? I could have said "stronger and more enduring every day," but that makes me sound like a style of clothing. I suppose "gaining in strength and endurance every day" would be nicely parallel and not misleading, but lacking in panache. Here: endurant: capable of enduring adversity, severity, or hardship from Merriam-Webster, pretty much what I meant.)
I also read this week's Annals which is surprisingly thin from my POV. There was an "In the Clinic" about contraception which was useful and there was a nice review of what the PCP needs to know about Preexposure Prophylaxis for HIV. There were a bunch of articles about giving patients access to read their medical record, but for me, this is a huge yawn because DHC has been doing that since before I was at DHC. So, Annals writer, doctors don't find it burdensome for patients to have access to their own records? How very interesting, is water still wet?
I did the sudokus for today and caught up with a couple of old crossword puzzles from last septic week. Dr Hill came in and we chatted for a while. My nurse today advocated very well for me this morning with Dr. Hill in puting together a plan to get me home tomorrow. I am very grateful; filled with enduring gratitude. The idea is that if I hadn't had the fevers last week, I'd be sitting at home with an ANC of 200 now so why make me stay here just because my ANC is 200? Maybe it's the antibiotic holding it down so we'll change to the one I'm going home on anyway and watch me for 24 hours and then barring fevers and weird things happening to my cell counts, I get to go home. Thank you, Kathy!
I am grateful for my strong advocate. May you have one when you need one as well.
Fortunately Tommie came to visit me and told me stories about her beautiful new apartment with huge shiny wooden floors and how Ellie slid around and how happily she and Kita explored the nooks and storage areas together. We had a nice time, ate lunch and looked a few photos. She had to leave woefully early as it is a three hour round trip drive.
I also walked some: up a flight of stairs, about a half mile all told, then down two flights of stairs. I was beginning to be aware of working at this point, but not feeling exhausted so I'm getting stronger and more endurant every day. (ok, smarty pants, what is the adjective for "having endurance"? I could have said "stronger and more enduring every day," but that makes me sound like a style of clothing. I suppose "gaining in strength and endurance every day" would be nicely parallel and not misleading, but lacking in panache. Here: endurant: capable of enduring adversity, severity, or hardship from Merriam-Webster, pretty much what I meant.)
I also read this week's Annals which is surprisingly thin from my POV. There was an "In the Clinic" about contraception which was useful and there was a nice review of what the PCP needs to know about Preexposure Prophylaxis for HIV. There were a bunch of articles about giving patients access to read their medical record, but for me, this is a huge yawn because DHC has been doing that since before I was at DHC. So, Annals writer, doctors don't find it burdensome for patients to have access to their own records? How very interesting, is water still wet?
I did the sudokus for today and caught up with a couple of old crossword puzzles from last septic week. Dr Hill came in and we chatted for a while. My nurse today advocated very well for me this morning with Dr. Hill in puting together a plan to get me home tomorrow. I am very grateful; filled with enduring gratitude. The idea is that if I hadn't had the fevers last week, I'd be sitting at home with an ANC of 200 now so why make me stay here just because my ANC is 200? Maybe it's the antibiotic holding it down so we'll change to the one I'm going home on anyway and watch me for 24 hours and then barring fevers and weird things happening to my cell counts, I get to go home. Thank you, Kathy!
I am grateful for my strong advocate. May you have one when you need one as well.
Saturday, October 6, 2012
Day 107 - sore legs, sore jaw
I mentioned earlier that there is a quite effective treatment for rigors--demerol. Demerol is an opioid like morphine or oxycodone, but has some properties that make it less desirable than the other opioids. It has a tendency to build up half processed medicine that then makes people likely to have seizures. It has to be used carefully so people don't get too much built up. Very early on, I had suggested demerol, but the suggestion was brushed aside, perhaps because I was rigorring constantly and enough demerol to stop the rigors may have been too much or perhaps because a full understanding of the consequences of rigors was not in place. However, around here was the magic day that someone said, "Let's get a demerol order" and it happened. Now, when I started to have a fever and began shaking, I could press my call button and ask for demerol and it would mercifully stop. At this point, I was pretty much of a mess. My jaw hurt more or less constantly and I could not walk without a walker because my legs were so sore. Even a little rigorring hurt my jaw more and my leg muscles which were already complaining about the marathon they'd run the previous four (five?) days, every time they tightened up and began shaking, they also began screaming because they were already so sore. It's interesting that this effect did not happen right away; it was like there were several days to collect the damage then I almost think there may have been a pause like six or ten hours without fever and then when the rigors restarted, they began to hurt.
/* trigger warning for mention of violence */
Rigors are funny because often if you concentrate, you can make them stop, but I can't make the muscle relax; I can just make it stop shaking. This is not all that helpful, but is a start. Anyway, I had had about two doses of demerol over the day and it was so helpful; then I started with yet another fever. Rigor, push the button, demerol, better but not completely better. I was lying there half awake shivering from time to time and Agnes began talking with me. "So, why do you have TMJ?"
"Because I've been beat up on in the past."
"And, you'd have to ask the people who beat up on you for help, right?"
"Yeah, but---"
"What would happen if you asked for help?"
"They'd tell me it didn't hurt; that I had never really felt pain; that I was a very wimpy person to think that was pain; that I didn't need help; that I was stupid for asking."
"Did these people here hurt your jaw?"
"No, but--"
"Are these nice people?"
"Yes. So you think I should ask them for help?"
"Yes."
So, I did. They, very matter of factly, gave me a second dose, I felt better and went to sleep.
In the interest of truth-telling, I have been beat up plenty by "care givers" but actually have TMJ from jaw clenching and tooth grinding (some in response to treatment by "care givers") so what I told Agnes Day was not, strictly speaking, accurate, but is what I told her.
I wonder if I would have been able to get myself to ask for a second dose without Agnes' help. I am not sure. What is known is that being ill, being febrile and one dose of demerol can erase thirty years, three degrees and countless hours of therapy, but one very decrepit, hyper-Catholic, sixteen year old Basset can restore the balance.
Thank you, Agnes. I wish you a long life, for my own benefit as well as yours. For everyone else, may you have people who can nudge you in the direction in your life always.
/* trigger warning for mention of violence */
Rigors are funny because often if you concentrate, you can make them stop, but I can't make the muscle relax; I can just make it stop shaking. This is not all that helpful, but is a start. Anyway, I had had about two doses of demerol over the day and it was so helpful; then I started with yet another fever. Rigor, push the button, demerol, better but not completely better. I was lying there half awake shivering from time to time and Agnes began talking with me. "So, why do you have TMJ?"
"Because I've been beat up on in the past."
"And, you'd have to ask the people who beat up on you for help, right?"
"Yeah, but---"
"What would happen if you asked for help?"
"They'd tell me it didn't hurt; that I had never really felt pain; that I was a very wimpy person to think that was pain; that I didn't need help; that I was stupid for asking."
"Did these people here hurt your jaw?"
"No, but--"
"Are these nice people?"
"Yes. So you think I should ask them for help?"
"Yes."
So, I did. They, very matter of factly, gave me a second dose, I felt better and went to sleep.
In the interest of truth-telling, I have been beat up plenty by "care givers" but actually have TMJ from jaw clenching and tooth grinding (some in response to treatment by "care givers") so what I told Agnes Day was not, strictly speaking, accurate, but is what I told her.
I wonder if I would have been able to get myself to ask for a second dose without Agnes' help. I am not sure. What is known is that being ill, being febrile and one dose of demerol can erase thirty years, three degrees and countless hours of therapy, but one very decrepit, hyper-Catholic, sixteen year old Basset can restore the balance.
Thank you, Agnes. I wish you a long life, for my own benefit as well as yours. For everyone else, may you have people who can nudge you in the direction in your life always.
Day 112 - mean marrow tricks
Today opened with my nurse telling me that my ANC had gone DOWN, not up overnight. It was now 200. These things happen and, it turns out, the doctors were not entirely surprised, but no one had warned me so I sure was! Two days ago we were at 60 and if it had gone 60, 120, 150, 200 I would have been perfectly happy, but because it went higher than 200 and then came down, I was quite disappointed. I keep telling people that I expect tomorrow's ANC to be "G" or a small squirrel because that makes as much sense as it going down this morning.
At any rate, that meant I didn't get to go home today, but Terry and Emily came to visit me so that was nice. We just sat around and chatted and then they took me for a little walk. I used to be able to stride up and down the fifth floor really as many times as I wanted. Now I was able to do half of the usual cycle with a rest in the middle and that was about it. I could have pushed it further, but I don't think pushing myself is a good plan right now. I'm not training for the leukemic olympics anyway.
They went home and I read the Sept 26 JAMA which has a really good article in it on COPD that mentions prominently the importance of palliative care and the full range of treatments for breathlessness. Eva has been getting a lot of push back from primary care docs about using opioids for dyspnea which is actually not at all controversial among those who are up to date. It is nice to have a very recent mainstream journal supporting our POV.
The other article was really interesting except that it felt like it was missing a page. It is about a different way of aggregating clinical trials so that you can make comparisons between two agents that were not necessarily compared in any real trial (Multiple Treatment Comparison meta-analysis). Kind of like meta analyses, but cutting the data differently. It spent all this time in explaining how to tell if the conglomerate studies were valid, coherent, etc. but then I never could figure out how to tell the treatment effect sizes. You may be smarter than me, have better luck with it or maybe have a page my JAMA doesn't. I'd recommend both articles.
A tiny factoid that I realized a couple days ago and again today is how happy I am that I boarded two years ago in Hospice and Palliative Medicine when I had my first chance to board. If I had waited, I would have been scheduled to take the boards Thursday and Friday. I am not sure who would have been easier to convince: Dr. Hill that I needed to go take the test or the board that I couldn't possibly take the test and needed to be allowed to take it with the people who need special accomodations in Nov. I am glad I had to convince neither. I wish I had thought of it in time, but retroactive good luck to all the boarders.
I am really hoping for a big ANC jump tomorrow so I can go home! I am not sure what to hope for you. So, once again, I will hope you get something you have been wishing for for yourself.
At any rate, that meant I didn't get to go home today, but Terry and Emily came to visit me so that was nice. We just sat around and chatted and then they took me for a little walk. I used to be able to stride up and down the fifth floor really as many times as I wanted. Now I was able to do half of the usual cycle with a rest in the middle and that was about it. I could have pushed it further, but I don't think pushing myself is a good plan right now. I'm not training for the leukemic olympics anyway.
They went home and I read the Sept 26 JAMA which has a really good article in it on COPD that mentions prominently the importance of palliative care and the full range of treatments for breathlessness. Eva has been getting a lot of push back from primary care docs about using opioids for dyspnea which is actually not at all controversial among those who are up to date. It is nice to have a very recent mainstream journal supporting our POV.
The other article was really interesting except that it felt like it was missing a page. It is about a different way of aggregating clinical trials so that you can make comparisons between two agents that were not necessarily compared in any real trial (Multiple Treatment Comparison meta-analysis). Kind of like meta analyses, but cutting the data differently. It spent all this time in explaining how to tell if the conglomerate studies were valid, coherent, etc. but then I never could figure out how to tell the treatment effect sizes. You may be smarter than me, have better luck with it or maybe have a page my JAMA doesn't. I'd recommend both articles.
A tiny factoid that I realized a couple days ago and again today is how happy I am that I boarded two years ago in Hospice and Palliative Medicine when I had my first chance to board. If I had waited, I would have been scheduled to take the boards Thursday and Friday. I am not sure who would have been easier to convince: Dr. Hill that I needed to go take the test or the board that I couldn't possibly take the test and needed to be allowed to take it with the people who need special accomodations in Nov. I am glad I had to convince neither. I wish I had thought of it in time, but retroactive good luck to all the boarders.
I am really hoping for a big ANC jump tomorrow so I can go home! I am not sure what to hope for you. So, once again, I will hope you get something you have been wishing for for yourself.
Friday, October 5, 2012
Day 106 - unintended consequences
If people were worried yesterday, today was worse, my temperatures were now sliding up towards 103 again. I had been on the correct antibiotic for a full 72 hours and while I was getting better clinically, my temperatures were worsening. All the cultures except the ones before antibiotics were negative, evidence I was on the right antibiotic and it was working, but I was spending more time with a higher fever. At this point, Dr. Lowrey, called in the infectious disease people to help. I felt so terrible that I do not remember much of our first meeting, evidently they asked some questions, explained some things, examined me, made recommendations and left. One of their thoughts was that the vanco might be causing fevers and we could consider stopping it. This was an interesting thought because everyone around me had noticed that at first when I had a fever I could tell, maybe not how high, but at least that I had one, but more recently I would guess that I didn't have a fever and I'd have a big fever like 103. I could still identify the smaller ones. We all thought that was weird but figured there were lots of other more important things to be thinking about like walking and my left ear which still hurt a lot.
Because of all the rigoring I had done, I really set off my TMJ, only on the left for some unknown reason, but that's ok. I also really tired out my muscles and it was hurting to get out of bed and bear weight on my calves and thighs. I could do it at this point, but needed some one to hold on to me because it seemed likely my knees might buckle. This was about when we thought it might be too far for me to walk to the bathroom and got me a commode. When I complained about how humiliating it was, one of the nurses pointed out that I was still wiping myself and I shut up really fast. For the TMJ, we tried amitriptyline which helped a lot with the worst of the pains, but seemed to transform the overall landscape from one of high sudden peaks and long plateus in between to an overall slightly raised plateau. I'm not sure if the area under the curve was the same or less. Because the unexpected stabs when I was trying to fall asleep were really the worst, I stuck with it.
Later that day, we did stop the vanco and I felt that within twelve hours the 103 degree spells that I had no idea I was febrile during disappeared and I felt another 20% better immediately. I think I ate a tuna fish sandwich this day. I was getting worried because high fevers and rigorring are very energetic activities and I had had almost no nutrition since admission. I was pretty sure my body was taking apart all my muscles to run these activities, but when you are asleep, rigoring or sweating up a storm, you do not want to be eating at the same time. If your mouth is moving around and your teeth are chattering, it is hard to stuff the sandwich in it for one thing.
I also discovered a very delicious hospital breakfast for the slightly lactose intolerant. There is, of course, boost and there is probably boost with soy, but I think boost is icky. I really like soy milk, carnation instant breakfast (which has a lot of milk in it but not so much as a glass of milk) and ice blended together. It's quite yummy and fairly good on protein and not so lactosey that it's a problem for my belly.
So, I think I will leave the story here with a couple of promised upcoming events: the inimitable Agnes Day will be making another appearance in the next day or two and the walking gets even worse.
Because of all the rigoring I had done, I really set off my TMJ, only on the left for some unknown reason, but that's ok. I also really tired out my muscles and it was hurting to get out of bed and bear weight on my calves and thighs. I could do it at this point, but needed some one to hold on to me because it seemed likely my knees might buckle. This was about when we thought it might be too far for me to walk to the bathroom and got me a commode. When I complained about how humiliating it was, one of the nurses pointed out that I was still wiping myself and I shut up really fast. For the TMJ, we tried amitriptyline which helped a lot with the worst of the pains, but seemed to transform the overall landscape from one of high sudden peaks and long plateus in between to an overall slightly raised plateau. I'm not sure if the area under the curve was the same or less. Because the unexpected stabs when I was trying to fall asleep were really the worst, I stuck with it.
Later that day, we did stop the vanco and I felt that within twelve hours the 103 degree spells that I had no idea I was febrile during disappeared and I felt another 20% better immediately. I think I ate a tuna fish sandwich this day. I was getting worried because high fevers and rigorring are very energetic activities and I had had almost no nutrition since admission. I was pretty sure my body was taking apart all my muscles to run these activities, but when you are asleep, rigoring or sweating up a storm, you do not want to be eating at the same time. If your mouth is moving around and your teeth are chattering, it is hard to stuff the sandwich in it for one thing.
I also discovered a very delicious hospital breakfast for the slightly lactose intolerant. There is, of course, boost and there is probably boost with soy, but I think boost is icky. I really like soy milk, carnation instant breakfast (which has a lot of milk in it but not so much as a glass of milk) and ice blended together. It's quite yummy and fairly good on protein and not so lactosey that it's a problem for my belly.
So, I think I will leave the story here with a couple of promised upcoming events: the inimitable Agnes Day will be making another appearance in the next day or two and the walking gets even worse.
Day 111 - normal hospital normal
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.
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.
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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