I am sorry for any confusion about the time of Patrick's talk yesterday. It was 7 and, Tommie says, went very well.
As for me, I got back at about 9 o'clock, greeted Ellie and Maggie and went to bed. Today I napped and finished the other side of Ellie's blanket. Tommie and I had lunch at the Green Bean. I drove to the drugstore to get my meds and to the grocery store to get yogurt.
Today's big excitement, however, is that I am going to go to the NHHPCO dinner talk tonight. Sadly, there are no more tickets to the event tomorrow because then people would have to sit on the floor and the fire marshall would not like that (probably the people on the floor wouldn't either). I didn't really know until today if I was going to be up for it, but in retrospect I should have just bought the tickets and let them resell mine if I couldn't go. Ah, well. Life lesson #48k.
I hope I can continue to learn from my experiences and keep getting smarter. I think I'll hope that for you, too.
Wednesday, November 14, 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.
---------
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. |
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