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.
Showing posts with label ups and downs. Show all posts
Showing posts with label ups and downs. Show all posts
Wednesday, October 3, 2012
Thursday, September 6, 2012
Day 82 - good news, VAD in, dinner had
Today had two pieces of excitement: my bone marrow results came back a day early and I got my VAD. Dr. Hill called me to tell me they were normal just as the nurse was calling me in to pre-anesthesia for my VAD. I did get to talk with him a little bit, but mostly just had to go so I could do my pre-op stuff, i.e., hurry up and wait.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.
I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.
Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.
Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."
Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.
The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.
I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.
Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.
For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.
Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.
Wanna see my port? I put it after the jump so you can avoid it if you want to.
Wednesday, September 5, 2012
Day 81 - another bone marrow biopsy
Just to let you know I am bone tired tonight and so this will be very short. I did get the thread last night and finished one of the two ends of the pillow this morning. I am so pleased with it. I won't put a picture up until Tommie sees it this weekend because I want her to see it in person before she sees the picture.
Terry and I went up to Lebanon and got my labs which were just about the same as yesterdays--no worse, but no better. Dr. Hill said that he was pretty sure that this was just due to the virus, but that there was a little chance it was due to leukemia relapse and (of course) that is the kind of thing that is best caught and caught early so we should just do the bone marrow biopsy and then we would know. I tried to talk him into putting it off until Friday, but he pointed out that then if I had relapsed we would have lost several days, maybe even more than two because of the intervening weekend. OK, fine.
Beth, the nurse practitioner did it and I told her I'd give her an A+. There was nothing that was painful about it and she confirmed that it's all in the speed of inserting and removing things from the bone marrow space. There were a couple of times when I said to myself, "that could become pain," but it didn't. Her assistant and I prattled on and on about the best restaurants in the SeaCoast and she told me about a great chocolate and bakery shop near Lebanon. I am hopeful that my love of sweets will return and I can visit there in earnest in a few months.
I would like to write more about bone marrow biopsies and pain, but that is not happening tonight.
Also, just in case I need chemo this weekend (I won't; I won't; I won't; the leukemia is not back!), I need a port placed. The nurses who put in the PICC lines said (very nicely) that they do not want to see me again because my anatomy is too weird. The surgeons in Lebanon said they would be happy to put an access device into me next week, but unless it is an emergency, they can't do it this week. So, I called Dr. Mahon and didn't even have to beg. I am sure it was one of the odder phone calls he has gotten from a patient asking him to put in their own device, but he was very gracious and I am getting my VAD tomorrow afternoon.
I hope you are able to get help getting what you need without having to beg. Thank you, Dr. Mahon.
Terry and I went up to Lebanon and got my labs which were just about the same as yesterdays--no worse, but no better. Dr. Hill said that he was pretty sure that this was just due to the virus, but that there was a little chance it was due to leukemia relapse and (of course) that is the kind of thing that is best caught and caught early so we should just do the bone marrow biopsy and then we would know. I tried to talk him into putting it off until Friday, but he pointed out that then if I had relapsed we would have lost several days, maybe even more than two because of the intervening weekend. OK, fine.
Beth, the nurse practitioner did it and I told her I'd give her an A+. There was nothing that was painful about it and she confirmed that it's all in the speed of inserting and removing things from the bone marrow space. There were a couple of times when I said to myself, "that could become pain," but it didn't. Her assistant and I prattled on and on about the best restaurants in the SeaCoast and she told me about a great chocolate and bakery shop near Lebanon. I am hopeful that my love of sweets will return and I can visit there in earnest in a few months.
I would like to write more about bone marrow biopsies and pain, but that is not happening tonight.
Also, just in case I need chemo this weekend (I won't; I won't; I won't; the leukemia is not back!), I need a port placed. The nurses who put in the PICC lines said (very nicely) that they do not want to see me again because my anatomy is too weird. The surgeons in Lebanon said they would be happy to put an access device into me next week, but unless it is an emergency, they can't do it this week. So, I called Dr. Mahon and didn't even have to beg. I am sure it was one of the odder phone calls he has gotten from a patient asking him to put in their own device, but he was very gracious and I am getting my VAD tomorrow afternoon.
I hope you are able to get help getting what you need without having to beg. Thank you, Dr. Mahon.
Tuesday, September 4, 2012
Day 80 - I'd rather have a normal day, thanks.
So, today I had a set of labs done at the NCCC in Manch. Dr. Manno had wanted to follow my platelets and hemoglobin to normal. The labs were a little surprising today; we were not able to follow my hemoglobin or platelets to normal today. Or, more worrisome, even my white cells. My hemoglobin had improved to 10.5, but my ANC had worsened to 1230 and my platelets were still low at 104. My liver and kidneys remained normal. This far out from chemo every time we check my labs they should look more and more normal until the next consolidation and these labs looked less like normal in two of the three cell types. To me this looked like a catastrophe. (Remember I'm good at jumping to the very worst possibility.) I was sure the leukemia was back with a dozen of its biggest and meanest cousins and I was worried. OK, I was more than worried and sure I was heading toward a transplant and all sorts of bad stuff. Maybe I should stop reading the primary literature on AML.
I called Dr. Hill's office and left a message with the secretary. I waited a whole hour and then half an hour more and then I couldn't take it any longer so I called and spoke with Dr. Hill's nurse, Elise. I have spoken before with Elise and she has always been extremely helpful. I think she was impressed by how anxious I was about this and told me that she would be sure that Dr. Hill saw my labs but he would probably be unable to call me back until 4:30. (Note number one, be sure the person taking the message understands the urgency to me of the message. Note number two, it really really does make a difference if you give people a time to expect an answer.) Dr. Hill did call me back at about 5:30 and pointed out that I had had a bad cold last week and that that was probably what caused the drop in my counts. O, yes, that. Remember those quaint old days when I would have some symptom and say to myself, "Something could be wrong with me or I could just be overworking; I'm sure it's overwork."? Now, almost any symptom can and will be attributed to the return of the leukemia. Dr. Hill further told me that he could not promise me that it wasn't badness causing my labs to be weird, but that it was much more common to be due to a cold. In fact, he had seen suppression of cells due to virusses a lot in the past and had seen it due to leukemia relapse much much less frequently.
He also pointed out that my hemoglobin was improving which is not what we would expect if it was the leukemia causing the drop in white cells (if the leukemia was back, one would expect it to make all the cells decrease) and he reminded me that my leukemia has been very well behaved so far and recurring so early and during active treatment would not be consistent with what we have seen of it so far. OK, deep breath.
I was reminded (and I told him) about how a big piece of what doctors do is holds patient worries for them. I cannot tell you how much better I felt after talking with him. Now when I have doctor/patient events like this, I try to remember to turn it around and think about being a doctor myself. I can recall having conversation when my patients either said they felt or clearly felt tremendous relief and am amazed that I can do that for someone, too.
The plan is to go to Lebanon tomorrow and re-do the labs there. Then I will see Dr. Hill, we'll look at the results (he'll probably ask the pathologist to look at the smear too) and decide if it looks reassuring or potentially bad. If it looks potentially bad, we'll do a bone marrow biopsy right then. If not, we'll drive home and I will not get another hole in my iliac crest.
I can't remember if I've mentioned that after the whole leukemia treatment thing is done and a couple years behind me, that I have wondered if I would use my bone marrow biopsy scars as the basis for a tattoo. Not quite sure, but maybe and, if so, I have some starts of ideas. The funny thing is I'm not quite sure how many scars I'll end up with so how exactly can I design around that?
So, today was filled with a lot of worry, but I was able to soothe myself pretty effectively with weaving. I am making a pillow for Tommie's office and yikes! it just flew this afternoon although I did seem to do a lot of unweaving and re-weaving. I am really pleased with it so far and cut it off the loom less than an hour ago. I went to finish it and d'oh! I have not a single spool of thread in the house. Not a one! Not even a bobbin that I can pretend is a spool of thread. I am thinking of running up to Walgreen's right now so that I can finish the pillow tomorrow morning before we have to leave for Lebanon. Can you tell I'm excited about it?
Other than worrying and weaving today, I didn't do a whole lot although Ellie and I made a trip downtown after school. She got her usual sandwich from The Green Bean and I got some really delicious fish chowder from Loaf and Ladle. I was disappointed it was not clam chowder before I took my first bite, but that didn't last long. She was not disappointed by her sandwich from The Green Bean. It has three ingredients and always tastes exactly the same.
So, today's news is not the best news I've ever given in these pages, but I'd like to encourage you to think it's going to turn out to be viral. I am really no longer anxious about it and wish that you won't be either. I'll let you know tomorrow if my labs were reassuring or worrisome (or most maddening, in the middle) and if I am the proud owner of a fourth hole in my back or not after we get back from Lebanon which will likely be five-ish.
I know you will be praying and thinking and hoping for me and I appreciate that. Thank you.
For all of us, good news and a surprisingly good bowl of chowder.
I called Dr. Hill's office and left a message with the secretary. I waited a whole hour and then half an hour more and then I couldn't take it any longer so I called and spoke with Dr. Hill's nurse, Elise. I have spoken before with Elise and she has always been extremely helpful. I think she was impressed by how anxious I was about this and told me that she would be sure that Dr. Hill saw my labs but he would probably be unable to call me back until 4:30. (Note number one, be sure the person taking the message understands the urgency to me of the message. Note number two, it really really does make a difference if you give people a time to expect an answer.) Dr. Hill did call me back at about 5:30 and pointed out that I had had a bad cold last week and that that was probably what caused the drop in my counts. O, yes, that. Remember those quaint old days when I would have some symptom and say to myself, "Something could be wrong with me or I could just be overworking; I'm sure it's overwork."? Now, almost any symptom can and will be attributed to the return of the leukemia. Dr. Hill further told me that he could not promise me that it wasn't badness causing my labs to be weird, but that it was much more common to be due to a cold. In fact, he had seen suppression of cells due to virusses a lot in the past and had seen it due to leukemia relapse much much less frequently.
He also pointed out that my hemoglobin was improving which is not what we would expect if it was the leukemia causing the drop in white cells (if the leukemia was back, one would expect it to make all the cells decrease) and he reminded me that my leukemia has been very well behaved so far and recurring so early and during active treatment would not be consistent with what we have seen of it so far. OK, deep breath.
I was reminded (and I told him) about how a big piece of what doctors do is holds patient worries for them. I cannot tell you how much better I felt after talking with him. Now when I have doctor/patient events like this, I try to remember to turn it around and think about being a doctor myself. I can recall having conversation when my patients either said they felt or clearly felt tremendous relief and am amazed that I can do that for someone, too.
The plan is to go to Lebanon tomorrow and re-do the labs there. Then I will see Dr. Hill, we'll look at the results (he'll probably ask the pathologist to look at the smear too) and decide if it looks reassuring or potentially bad. If it looks potentially bad, we'll do a bone marrow biopsy right then. If not, we'll drive home and I will not get another hole in my iliac crest.
I can't remember if I've mentioned that after the whole leukemia treatment thing is done and a couple years behind me, that I have wondered if I would use my bone marrow biopsy scars as the basis for a tattoo. Not quite sure, but maybe and, if so, I have some starts of ideas. The funny thing is I'm not quite sure how many scars I'll end up with so how exactly can I design around that?
So, today was filled with a lot of worry, but I was able to soothe myself pretty effectively with weaving. I am making a pillow for Tommie's office and yikes! it just flew this afternoon although I did seem to do a lot of unweaving and re-weaving. I am really pleased with it so far and cut it off the loom less than an hour ago. I went to finish it and d'oh! I have not a single spool of thread in the house. Not a one! Not even a bobbin that I can pretend is a spool of thread. I am thinking of running up to Walgreen's right now so that I can finish the pillow tomorrow morning before we have to leave for Lebanon. Can you tell I'm excited about it?
Other than worrying and weaving today, I didn't do a whole lot although Ellie and I made a trip downtown after school. She got her usual sandwich from The Green Bean and I got some really delicious fish chowder from Loaf and Ladle. I was disappointed it was not clam chowder before I took my first bite, but that didn't last long. She was not disappointed by her sandwich from The Green Bean. It has three ingredients and always tastes exactly the same.
So, today's news is not the best news I've ever given in these pages, but I'd like to encourage you to think it's going to turn out to be viral. I am really no longer anxious about it and wish that you won't be either. I'll let you know tomorrow if my labs were reassuring or worrisome (or most maddening, in the middle) and if I am the proud owner of a fourth hole in my back or not after we get back from Lebanon which will likely be five-ish.
I know you will be praying and thinking and hoping for me and I appreciate that. Thank you.
For all of us, good news and a surprisingly good bowl of chowder.
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