Today's big activity is that Diane came to visit. We went for a nice 2 mile walk and had a chit-chat and lunch and it was great to see her. Otherwise, a quiet day with napping, catching up on the crosswords and reading taking up the slack.
Chemo round #5 is scheduled for about an hour. I wish it was scheduled for this very second because I want to go to bed now. Then chemo #6 in the morning and then home for this little chemojailbird just after lunch. They tell me that almost no one is discharged from MHMC before lunch; they just can't get themselves mobilized to do it. I will be able in all likelihood to be home in time for dinner so that will be very nice. I will be so happy to see my family, dog, bed and couch.
Tonight is sort of interesting because I have been admitted on Friday night three of my five admissions. It has been very rare for me to stay over from Thursday to Friday. Friday evening at MHMC is a little louder and sillier than the other nights. When I was being admitted on a Friday and part of the general mayhem, I didn't particularly notice, but this time, when I was admitted on Monday and am several days in on Friday, I can't believe how high energy the evening nurses and the new patients coming in are. Geez! Why so happy to be coming in to the hospital? I realize this paragraph sounds very curmudgeonly. Maybe I'm becoming my own grandfather.
For me, for tonight and tomorrow, I am wishing for speedy, uncomplicated chemo infusion and then speedy, uncomplicated flying out of here. I hope for you, too, that you are able to do unhindered any tasks you do tomorrow.
Showing posts with label consolidation. Show all posts
Showing posts with label consolidation. Show all posts
Friday, October 26, 2012
Thursday, October 25, 2012
Day 131 - 4/6 chemo's down
Well, I forgot who said it on my last consolidation, but one of the docs said that each consolidation will hit sooner and harder and, yup, they seem to be right. I was so tired that I *couldn't* stay awake during chemo this morning and then after lunch and my very much truncated walk (0.6 or so miles), I felt I had to take a nap *again*. I actually even had a visitor that I slept through which is extremely unlike me so I guess I was really tired!
I did have a couple of local visitors that I was awake for and that was very nice. John, a third year resident friend from a previous admission stopped by with a poster for an ACP conference and I proofread it for him, making little suggestions to make the story clearer. That was fun and I got to chat with him briefly about how he's doing otherwise, how life is, etc. I really liked seeing him.
Marv, the writing coach (?), faclitator (?) stopped by to chat. He had a writing group tonight that he said I could join for the evening and that was fun.
Since there's not much to tell you about today that happened in the outside world, I'll tell you about the state of the marrow space which we have not visited for a long time. At the start of this admission, it was filled with snap dragons of all colors that were really thriving. Somehow it felt important to let the plants know that even though they were being flooded with poison, they were loved and I hoped and expected they'd be back soon. So, I went into the garden and brushed my hand over each of their little tops. This was not what they wanted. Each plant wanted individual acknowledgement and for me to open the top flower on the stalk and put the tip of my index finger inside of it (which I used to always do to snap dragons when I was a little girl). Then, as I floated around the garden (floated so that I did not damage any flowers), I would come upon areas of various sizes on the ground with no growth at all. These areas were areas where the leukemia was hiding and I had to take my (now) real corporeal feet and a shovel that appeared out of nowhere and turn the dirt over to a depth of six inches, break up the clots and leave it alone in order to root out the leukemia. I am always astonished at what comes out of my unconscious mind. The fingers, the floating and the turning over of dirt. What a pleasant way to cure one's cancer!
For tomorrow, for me, I will wish the chemo success in rooting out the hiders. Do you need help rooting out anything? If so, may you get whatever help you would prefer tomorrow.
I did have a couple of local visitors that I was awake for and that was very nice. John, a third year resident friend from a previous admission stopped by with a poster for an ACP conference and I proofread it for him, making little suggestions to make the story clearer. That was fun and I got to chat with him briefly about how he's doing otherwise, how life is, etc. I really liked seeing him.
Marv, the writing coach (?), faclitator (?) stopped by to chat. He had a writing group tonight that he said I could join for the evening and that was fun.
Since there's not much to tell you about today that happened in the outside world, I'll tell you about the state of the marrow space which we have not visited for a long time. At the start of this admission, it was filled with snap dragons of all colors that were really thriving. Somehow it felt important to let the plants know that even though they were being flooded with poison, they were loved and I hoped and expected they'd be back soon. So, I went into the garden and brushed my hand over each of their little tops. This was not what they wanted. Each plant wanted individual acknowledgement and for me to open the top flower on the stalk and put the tip of my index finger inside of it (which I used to always do to snap dragons when I was a little girl). Then, as I floated around the garden (floated so that I did not damage any flowers), I would come upon areas of various sizes on the ground with no growth at all. These areas were areas where the leukemia was hiding and I had to take my (now) real corporeal feet and a shovel that appeared out of nowhere and turn the dirt over to a depth of six inches, break up the clots and leave it alone in order to root out the leukemia. I am always astonished at what comes out of my unconscious mind. The fingers, the floating and the turning over of dirt. What a pleasant way to cure one's cancer!
For tomorrow, for me, I will wish the chemo success in rooting out the hiders. Do you need help rooting out anything? If so, may you get whatever help you would prefer tomorrow.
Wednesday, October 24, 2012
Day 130 - coming right up! chemo
Today was a very nice day. Stefan stopped in this morning on his way to lecture and we chatted for a while. He became the second person in less than a week to ask to hear "my story." It's funny how these things work. I haven't told it in ages, then all of a sudden, twice in one week. Hopefully, I told the same story both times!
Later in the day, Tommie came to visit and we chatted, ate lunch and went for a 2 mile walk. This makes three days in a row. I did get quite short of breath on this walk too, but I bet when I'm not anemic, I'll be able to walk and talk at the same time.
I haven't brought you up to date on the best articles in the latest journals in a while so let me do that now. The Oct 24/31 JAMA had only one article I liked much. It was the "Piece of my mind" by an oncologist who had prostate cancer and who wrote about "Cancer Survivorship and Beyond." It is kind of interesting, I think until near the end when it really picks up steam and he writes "A cancer diagnosis is obviously unwelcome. There is no minimizing the sense of threat, and clearly one wants to survive. But by moving beyond the focused identity of cancer survivor, one opens oneself to fellowship with all in the grip of life's fragility." I thought that paragraph was really lovely and kind of captures what I don't like so much about "cancer survivor": it makes it seem like the life threatening experience of cancer is a special club that people who have other life threatening diseases or just the life threatening condition of being alive can't ever aspire to. Except he said it better. There were a bunch of articles, but none of them was really very interesting to me.
The Annals from 10/16, however, had lots of good stuff in it. There was a really cool study of reusing resterilized ICDs in India. It's not legal exactly, but a group of people collected them in the U.S. and sent them to India where people who in no way could otherwise get them, got these fabulous life saving devices and the devices went on saving lives. Very, very cool. Then there was this other study where they took a dozen normal people and had them sleep normally four nights, then did a fat biopsy, then had them sleep for 4.5 hours/night for four nights and did another fat biopsy. They were hugely more insulin resistant in the sleep deprived state. We've talked before about how closely linked I think sleep and weight/metabolism issues are. Another little piece of evidence.
I'm still reading "Dying for Beginners" and still recommend it and still having fun with "Beautiful Swimmers." I haven't posted pictures of my darkening hair recently so here are two, taken with my fabulous new phone. You can't tell the texture of my hair, but it seems to be about the same. the color is a little bit darker, actually less gray and less white. This is the opposite of what I was expecting, but just fine. I'm not entirely sure that the first picture looks like me.
Since tonight is chemo night for me, I'm hoping for a quiet, non-eventful, sleep-filled night. That's not a bad wish for you, unless you want a rowdy, busy, awake all night kind of night. In that case, I hope that's what you get.
Later in the day, Tommie came to visit and we chatted, ate lunch and went for a 2 mile walk. This makes three days in a row. I did get quite short of breath on this walk too, but I bet when I'm not anemic, I'll be able to walk and talk at the same time.
I haven't brought you up to date on the best articles in the latest journals in a while so let me do that now. The Oct 24/31 JAMA had only one article I liked much. It was the "Piece of my mind" by an oncologist who had prostate cancer and who wrote about "Cancer Survivorship and Beyond." It is kind of interesting, I think until near the end when it really picks up steam and he writes "A cancer diagnosis is obviously unwelcome. There is no minimizing the sense of threat, and clearly one wants to survive. But by moving beyond the focused identity of cancer survivor, one opens oneself to fellowship with all in the grip of life's fragility." I thought that paragraph was really lovely and kind of captures what I don't like so much about "cancer survivor": it makes it seem like the life threatening experience of cancer is a special club that people who have other life threatening diseases or just the life threatening condition of being alive can't ever aspire to. Except he said it better. There were a bunch of articles, but none of them was really very interesting to me.
The Annals from 10/16, however, had lots of good stuff in it. There was a really cool study of reusing resterilized ICDs in India. It's not legal exactly, but a group of people collected them in the U.S. and sent them to India where people who in no way could otherwise get them, got these fabulous life saving devices and the devices went on saving lives. Very, very cool. Then there was this other study where they took a dozen normal people and had them sleep normally four nights, then did a fat biopsy, then had them sleep for 4.5 hours/night for four nights and did another fat biopsy. They were hugely more insulin resistant in the sleep deprived state. We've talked before about how closely linked I think sleep and weight/metabolism issues are. Another little piece of evidence.
I'm still reading "Dying for Beginners" and still recommend it and still having fun with "Beautiful Swimmers." I haven't posted pictures of my darkening hair recently so here are two, taken with my fabulous new phone. You can't tell the texture of my hair, but it seems to be about the same. the color is a little bit darker, actually less gray and less white. This is the opposite of what I was expecting, but just fine. I'm not entirely sure that the first picture looks like me.
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| It's really me, but doesn't quite look it to me. |
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| This is me, too with a nice cytarabine/decadron apple cheek rash |
Since tonight is chemo night for me, I'm hoping for a quiet, non-eventful, sleep-filled night. That's not a bad wish for you, unless you want a rowdy, busy, awake all night kind of night. In that case, I hope that's what you get.
Tuesday, October 23, 2012
Day 129 - late night blogging
I confess; I was just about to jump in bed when I realized I hadn't blogged yet today. My public awaits! I postponed bed to update you because today was an interesting day.
The morning was occupied largely with reading of "Beautiful Swimmers" a book about "Watermen, Crabs and the Chesapeake Bay." One of the volunteers here gave it to me and the Chesapeake Bay has been important to lots of people who are important to me so I thought I'd better read it. I've also been reading "What have you lost?" a book of poems. In the first section, people seemed to have lost their younger selves. In the second section, people seem to have lost their countries of origin. People who have lost their countries of origin are not so relentless about balancing up what they've lost and recovered as the people who wrote primarily about lost youth. It is unclear to me what this might mean. We'll see what people lose next.
As for activities, last night was not my favorite night. I like to go to be at 8:30 or so and at 8:15 my nurse came in and asked if anyone had told me I was moving rooms. I said, "Yes, you just did about two seconds ago." When I came, the nurses kindly put me in the biggest room, but evidently there was a very large patient whose need for the largest room (and the largest bathroom--it makes me tear up to think how nice it was) was greater than mine. The patient who was in the room prior to me discharged at 8 pm and housekeeping could not get the room done until 10:30. I could not stay up until 10:30 so the nurses rolled me into my new room and carried all my stuff in for me. It was very sweet and silly. Then at 0230, my stomach which had not been the happiest for about a week (won't go into TMI details) thought it would take this opportunity to start barfing. I had declined (as I always do) any anti-barf meds (technically called anti-emetics) because I don't (ahem, didn't) need them and they give such unpleasant side effects sometimes. I declined them again at 0230 because I felt pretty good after barfing. Then about thirty minutes later, I started again. This time I accepted the meds. I don't really know if I needed them or not, but I was not interested in more barfing. I had more chemo this morning with no problems and no anti-emetics so that is good, maybe it's all settled out. I hope so for sure! It's funny because my main emotion when I was barfing was that I was really mad because I had made it through way more than half of treatment without any barfing and now! I was starting. I think it was a combination of pre-chemo stomach virus or something, mushrooms for dinner and chemo.
The interesting thing for me, however, was that about twenty minutes after I barfed the second time, my nurse came in with zofran and my eyedrops (which have to be given every six hours; could they please be more inconvenient?) I really really didn't want to do my eyedrops; it felt like such an imposition. I recognized this in the light of morning as a little excessive, and even at the time I was able to reason myself to there is no better time than now to do it, just do it, but it took a lot of concentration on my part not to whine. However, my eyes are still beautifully white (the cytarabine gives people a similar rash on their conjunctivae to what it did to my stomach. Remember that?) so they are doing their job--onerous as they are. It was just really interesting; after barfing and being messed with once I didn't want the eyedrops. I occurred to me just this second that I wonder if I would have responded better to eyedrops first (maybe because I had the strength in me for one intervention) and then zofran (because that was the intervention I wanted). Hmmm. Might be an applicable thought in other areas of my life, too.
After barfing, eyedrops, zofran and then morning sudoku, general goofing around and Beautiful Swimmer, Eva came to visit me. We went for a 2 mile walk and I noticed that going uphill while chatting was doing me in more than going uphill while not chatting did the day before when I walked alone. (My hgb is still only 9.6--a little low.) At first, I was puzzled about why Eva was stopped at the tops of little hills and seemed to be waiting for me to walk down first, then I figured out that she was being very tactful because I was breathing hard.
Stefan, Terry and I had talked the other night about anxiety in cancer survivors and I wondered if there were studies of meditation in anxiety reduction among cancer survivors and there were some. My assessment is that the older ones are not that great and don't show a difference, but the newer ones are better conducted and seem to be somewhat positive for the few limited cancers that have been studied. It is very hard to believe that learning to meditate and practicing meditation would not decrease anxiety in cancer survivors (or really almost anyone). I would love to see the Norris Cotton offering meditation courses. Another modality I know nothing about that seems to have some positive results is called "mindful movement."
After that, it was time for bed and I'll likely be asleep by 9:00. Not too bad.
For me, tomorrow I'll hope for improved GI function. For you, whichever bodily system is giving you the most troubles, I hope improves a bit tomorrow. If you are so lucky that none of your systems is troubling you, I will hope that are able to appreciate tomorrow just how lucky you are. Maybe you already appreciate how lucky you are that you have a perfectly functioning body? I am not sure what I might hope for you for tomorrow. A really good cup of coffee?
The morning was occupied largely with reading of "Beautiful Swimmers" a book about "Watermen, Crabs and the Chesapeake Bay." One of the volunteers here gave it to me and the Chesapeake Bay has been important to lots of people who are important to me so I thought I'd better read it. I've also been reading "What have you lost?" a book of poems. In the first section, people seemed to have lost their younger selves. In the second section, people seem to have lost their countries of origin. People who have lost their countries of origin are not so relentless about balancing up what they've lost and recovered as the people who wrote primarily about lost youth. It is unclear to me what this might mean. We'll see what people lose next.
As for activities, last night was not my favorite night. I like to go to be at 8:30 or so and at 8:15 my nurse came in and asked if anyone had told me I was moving rooms. I said, "Yes, you just did about two seconds ago." When I came, the nurses kindly put me in the biggest room, but evidently there was a very large patient whose need for the largest room (and the largest bathroom--it makes me tear up to think how nice it was) was greater than mine. The patient who was in the room prior to me discharged at 8 pm and housekeeping could not get the room done until 10:30. I could not stay up until 10:30 so the nurses rolled me into my new room and carried all my stuff in for me. It was very sweet and silly. Then at 0230, my stomach which had not been the happiest for about a week (won't go into TMI details) thought it would take this opportunity to start barfing. I had declined (as I always do) any anti-barf meds (technically called anti-emetics) because I don't (ahem, didn't) need them and they give such unpleasant side effects sometimes. I declined them again at 0230 because I felt pretty good after barfing. Then about thirty minutes later, I started again. This time I accepted the meds. I don't really know if I needed them or not, but I was not interested in more barfing. I had more chemo this morning with no problems and no anti-emetics so that is good, maybe it's all settled out. I hope so for sure! It's funny because my main emotion when I was barfing was that I was really mad because I had made it through way more than half of treatment without any barfing and now! I was starting. I think it was a combination of pre-chemo stomach virus or something, mushrooms for dinner and chemo.
The interesting thing for me, however, was that about twenty minutes after I barfed the second time, my nurse came in with zofran and my eyedrops (which have to be given every six hours; could they please be more inconvenient?) I really really didn't want to do my eyedrops; it felt like such an imposition. I recognized this in the light of morning as a little excessive, and even at the time I was able to reason myself to there is no better time than now to do it, just do it, but it took a lot of concentration on my part not to whine. However, my eyes are still beautifully white (the cytarabine gives people a similar rash on their conjunctivae to what it did to my stomach. Remember that?) so they are doing their job--onerous as they are. It was just really interesting; after barfing and being messed with once I didn't want the eyedrops. I occurred to me just this second that I wonder if I would have responded better to eyedrops first (maybe because I had the strength in me for one intervention) and then zofran (because that was the intervention I wanted). Hmmm. Might be an applicable thought in other areas of my life, too.
After barfing, eyedrops, zofran and then morning sudoku, general goofing around and Beautiful Swimmer, Eva came to visit me. We went for a 2 mile walk and I noticed that going uphill while chatting was doing me in more than going uphill while not chatting did the day before when I walked alone. (My hgb is still only 9.6--a little low.) At first, I was puzzled about why Eva was stopped at the tops of little hills and seemed to be waiting for me to walk down first, then I figured out that she was being very tactful because I was breathing hard.
Stefan, Terry and I had talked the other night about anxiety in cancer survivors and I wondered if there were studies of meditation in anxiety reduction among cancer survivors and there were some. My assessment is that the older ones are not that great and don't show a difference, but the newer ones are better conducted and seem to be somewhat positive for the few limited cancers that have been studied. It is very hard to believe that learning to meditate and practicing meditation would not decrease anxiety in cancer survivors (or really almost anyone). I would love to see the Norris Cotton offering meditation courses. Another modality I know nothing about that seems to have some positive results is called "mindful movement."
After that, it was time for bed and I'll likely be asleep by 9:00. Not too bad.
For me, tomorrow I'll hope for improved GI function. For you, whichever bodily system is giving you the most troubles, I hope improves a bit tomorrow. If you are so lucky that none of your systems is troubling you, I will hope that are able to appreciate tomorrow just how lucky you are. Maybe you already appreciate how lucky you are that you have a perfectly functioning body? I am not sure what I might hope for you for tomorrow. A really good cup of coffee?
Monday, October 22, 2012
Day 128 - no chemo--yet
The very exciting good news is that my CT scan was fine. The pleural effusion that I didn't know I had was gone; the lung nodules that I didn't know I had have not changed and, in fact, look like old granulomatous disease (like histo, given that I lived in the midwest for 25+ years). Somehow I thought I had mediastinal lymphadenopathy and that was never there. So, maybe I was a *little* delerious or at least have some memory problems due to the fever.
I think I was much sicker than I really quite understood. I realized today that, Linda, the chaplain, came to visit me during my last admission. I had not remembered that until this afternoon. My LNA today told me she took care of me for a couple of days my last admission. She does not even look familiar.
I was much more anxious today in Dr Hill's clinic, in the CT scanner and even at our favorite grocery store that we always stop at on the way in and out (we didn't stop last time because I was in an ambulance) than I recall being before. It was not quite to the level of a panic attack, but it was pretty strong. I feel OK now that I am here in the clinic and I am hoping that it will just abate going forward now that I have redone at least some of the things that I did when I was sick. We'll see how getting chemo goes which should happen in an hour or so. I've never gotten chemo when I've been sick (of course, they don't give it to sick people) so it *should* be OK.
Otherwise, I went for a lovely 2.2 mile walk in the woods by DHMC today. I have a 4S phone now which has a much better camera so I can take nice pictures like these:
I will try not to become insufferable with the camera and how nice it is, but it may be hard for me because I am so happy with these pictures.
I am hopeful that I can do chemo tonight without a panic attack or any other event. For you, if you have a bad memory that is pestering (or worse) you, I hope you can make some progress in freeing yourself from it.
I think I was much sicker than I really quite understood. I realized today that, Linda, the chaplain, came to visit me during my last admission. I had not remembered that until this afternoon. My LNA today told me she took care of me for a couple of days my last admission. She does not even look familiar.
I was much more anxious today in Dr Hill's clinic, in the CT scanner and even at our favorite grocery store that we always stop at on the way in and out (we didn't stop last time because I was in an ambulance) than I recall being before. It was not quite to the level of a panic attack, but it was pretty strong. I feel OK now that I am here in the clinic and I am hoping that it will just abate going forward now that I have redone at least some of the things that I did when I was sick. We'll see how getting chemo goes which should happen in an hour or so. I've never gotten chemo when I've been sick (of course, they don't give it to sick people) so it *should* be OK.
Otherwise, I went for a lovely 2.2 mile walk in the woods by DHMC today. I have a 4S phone now which has a much better camera so I can take nice pictures like these:
 |
| Flowers tucked into the edge of the driveway--my 3 could not get details like this. |
 |
| A stream on my favorite DHMC walk. Last time I was here, it was dry. I like how the light is very low and hits different parts of the scene differently. |
I will try not to become insufferable with the camera and how nice it is, but it may be hard for me because I am so happy with these pictures.
I am hopeful that I can do chemo tonight without a panic attack or any other event. For you, if you have a bad memory that is pestering (or worse) you, I hope you can make some progress in freeing yourself from it.
Wednesday, September 19, 2012
Day 95 - home again, home again!
Here are my statistics for this consolidation:
doses of chemo: 6
visitors (counted only once/person):6
meals I ordered delivered correctly by hospital staff: 8/13
meals I ordered delivered correctly by commercial take out staff: 1/1
how happy I am to be home now: infinity
Compared to consolidation #1, this one was much easier. I feel completely "with it" now (remember I was quite "without it" after my last one); I am a little tired, but not overwhelmingly so. It was harder at the beginning, however, I think, because I had five weeks off instead of the previous measly four so I was starting to see that I could feel normal if I just kept off the poisons. I was not quite so willing to get back on them as I had been the first time.
Another difference is that this time (as is highlighted above) the food service was sending in random meals at some points. I was not all that excited about eating all the time anyway (one of the LNAs said to "eat like it's medicine" and I often have to) and to have something I wouldn't like under good circumstances show up is not that helpful. On the other hand, it became a little funny eventually to see what ridiculous things might show up on the tray. Vegetarian chili? No, sorry, pork roast. Entertainment is always welcome even if random foodstuff is not. Anyway, I'm home now and had Green Bean gorgonzola salad and pesto/mozzarella/tomato sandwich for dinner. I'm stuffed and it clearly made up for several of the "medicine meals" eaten at the hospital.
A second difference is that I expanded my walks a bit. I had previously seen the signs for the "Albert Schweitzer" trail, but had never followed them because I think I felt a little fragile and didn't want to potentially stray that far from the hospital. This visit I was feeling a little more self-confident and stronger and crossed the road (after googling the trails and memorizing their routes). It turns out the trails are completely on hospital land and are about one million times nicer than the circumferential hospital trail (like, they are real woods trails that go up and down and have old trees around and roots across the path and everything). This was good for morale, too.
A final difference was that this time I officially became too uninteresting for the residents' team and was followed by the nurse practitioner. Whether or not I'm interesting is somewhat debatable, of course. I am able to grant immediately that medically I am the dullest patient on the floor (happily!), but I think by virtue of the fact that I'm a practicing doc myself I have a thing or two to offer to residents that is actually hard to get in other ways. On the other hand, they may have gotten a lot of that in their first day with me (who knows what the heart absorbs when?).
Be that as it may, initially, no one explained to me that being on the nurse practitioner's service meant that the attending would still be seeing me. This was a fairly reasonable assumption because my first day on the NP team, the attending did not round on me (the fellow had and that counts for administrative purposes and I was spending a lot of time on the afore-mentioned trail so he couldn't find me, but didn't leave a note or call so I didn't know). I thought it meant that all the faces I had grown accustomed to would evaporate and I was feeling quite abandoned. (note the recurrent problem: goodbye not said) But guess what happened that was really, really nice? The intern who had been to busy to do more than the minimum in the morning had promised to come back to chat and he did. He was under absolutely no obligation to. I was no longer his patient. He could easily have stuck his head in and said something perfunctory or he could have come in and had a short chat with me, but he stayed for a long while--asked questions he didn't have to, answered questions of me he didn't have to. I was touched and impressed. I am quite sure he's going to be really good. Then this morning, I went for a walk (to get the coffee that I have discovered I can stand) and I saw the intern again. He said hi and remembered that I was leaving today. Then a while later I saw the fellow; same thing. I have had many a non-recognizing experience in the common area of the hospital; it made me feel noticed, appreciated. I liked it. I'm not sure what the difference was this admission, but it's good.
Now, after a non-eventful ride, I'm home. I took the dog for a walk, helped a little with homework, walked downtown to get dinner, ate too much and have read one of the semi-junk journals that get sent to us. About once/year I get hooked by an interesting title or two and always waste more time than it's worth. Anyway, a meta-analysis of 300,000+ primary and secondary MI prevention shows that about 50% of primary prevention patients and 67% of secondary prevention patients being adherent to their meds (having the med on hand 75% of the time is their definition). Yikes! Beta blockers are the secondary prevention med people are most likely to skip and diuretics and beta blockers are the primary prevention med people are most likely to skip. Food for thought.
I'm tired now and going to go to bed. I am happy to have felt appreciated and noticed today by the house staff (that's the technical term for residents and fellows). I hope you are feeling appreciated and noticed. I am even happier to be home. I hope you are right where you want to be tonight.
doses of chemo: 6
visitors (counted only once/person):6
meals I ordered delivered correctly by hospital staff: 8/13
meals I ordered delivered correctly by commercial take out staff: 1/1
how happy I am to be home now: infinity
Compared to consolidation #1, this one was much easier. I feel completely "with it" now (remember I was quite "without it" after my last one); I am a little tired, but not overwhelmingly so. It was harder at the beginning, however, I think, because I had five weeks off instead of the previous measly four so I was starting to see that I could feel normal if I just kept off the poisons. I was not quite so willing to get back on them as I had been the first time.
Another difference is that this time (as is highlighted above) the food service was sending in random meals at some points. I was not all that excited about eating all the time anyway (one of the LNAs said to "eat like it's medicine" and I often have to) and to have something I wouldn't like under good circumstances show up is not that helpful. On the other hand, it became a little funny eventually to see what ridiculous things might show up on the tray. Vegetarian chili? No, sorry, pork roast. Entertainment is always welcome even if random foodstuff is not. Anyway, I'm home now and had Green Bean gorgonzola salad and pesto/mozzarella/tomato sandwich for dinner. I'm stuffed and it clearly made up for several of the "medicine meals" eaten at the hospital.
A second difference is that I expanded my walks a bit. I had previously seen the signs for the "Albert Schweitzer" trail, but had never followed them because I think I felt a little fragile and didn't want to potentially stray that far from the hospital. This visit I was feeling a little more self-confident and stronger and crossed the road (after googling the trails and memorizing their routes). It turns out the trails are completely on hospital land and are about one million times nicer than the circumferential hospital trail (like, they are real woods trails that go up and down and have old trees around and roots across the path and everything). This was good for morale, too.
A final difference was that this time I officially became too uninteresting for the residents' team and was followed by the nurse practitioner. Whether or not I'm interesting is somewhat debatable, of course. I am able to grant immediately that medically I am the dullest patient on the floor (happily!), but I think by virtue of the fact that I'm a practicing doc myself I have a thing or two to offer to residents that is actually hard to get in other ways. On the other hand, they may have gotten a lot of that in their first day with me (who knows what the heart absorbs when?).
Be that as it may, initially, no one explained to me that being on the nurse practitioner's service meant that the attending would still be seeing me. This was a fairly reasonable assumption because my first day on the NP team, the attending did not round on me (the fellow had and that counts for administrative purposes and I was spending a lot of time on the afore-mentioned trail so he couldn't find me, but didn't leave a note or call so I didn't know). I thought it meant that all the faces I had grown accustomed to would evaporate and I was feeling quite abandoned. (note the recurrent problem: goodbye not said) But guess what happened that was really, really nice? The intern who had been to busy to do more than the minimum in the morning had promised to come back to chat and he did. He was under absolutely no obligation to. I was no longer his patient. He could easily have stuck his head in and said something perfunctory or he could have come in and had a short chat with me, but he stayed for a long while--asked questions he didn't have to, answered questions of me he didn't have to. I was touched and impressed. I am quite sure he's going to be really good. Then this morning, I went for a walk (to get the coffee that I have discovered I can stand) and I saw the intern again. He said hi and remembered that I was leaving today. Then a while later I saw the fellow; same thing. I have had many a non-recognizing experience in the common area of the hospital; it made me feel noticed, appreciated. I liked it. I'm not sure what the difference was this admission, but it's good.
Now, after a non-eventful ride, I'm home. I took the dog for a walk, helped a little with homework, walked downtown to get dinner, ate too much and have read one of the semi-junk journals that get sent to us. About once/year I get hooked by an interesting title or two and always waste more time than it's worth. Anyway, a meta-analysis of 300,000+ primary and secondary MI prevention shows that about 50% of primary prevention patients and 67% of secondary prevention patients being adherent to their meds (having the med on hand 75% of the time is their definition). Yikes! Beta blockers are the secondary prevention med people are most likely to skip and diuretics and beta blockers are the primary prevention med people are most likely to skip. Food for thought.
I'm tired now and going to go to bed. I am happy to have felt appreciated and noticed today by the house staff (that's the technical term for residents and fellows). I hope you are feeling appreciated and noticed. I am even happier to be home. I hope you are right where you want to be tonight.
Tuesday, September 18, 2012
Day 94 - dose 5 coming right up!
Today was a quiet day of visiting with Eva, reading a bit, sending email and two miles of indoor walking (and art admiring!).
It was a nice day without a whole lot of excitement (just like we like our days in the hospital). Tommie has been asking for a while that I explain what rounding is, how it works, etc. and it is relevant to the most recent excitement here so I guess it's time.
When a patient is in the hospital, it is important that there is one doctor in charge of them or one ends up with the "too many cooks" syndrome. Therefore, when a patient is admitted, they are given a single "attending" doctor who is their main cook. It is usually the doctor who will care for the problem that most makes the person need to be admitted to the hospital, but not always. Some doctors (mostly specialists) don't have patients on their services and sometimes a patient will come in with, say, a broken hip, but have so many other medical problems that even though the hip brought them in, they are really better served by a doctor who can manage their diabetes, high blood pressure and heart failure. The attending doctor decides which other doctors can be involved in the patient's care, writes the admission and main orders (and in some hospitals, writes all the orders) and is in control of the general course of the patient's care.
Because doctors are human, most doctors admit to "teams" where Dr. A is the day time doctor, Dr. B is the night time doctor and Dr. C will be taking over during the day in three days. Sometimes the "team" aspect of the work is split up even more, especially in teaching hospitals. These teams usually consist of something like a first year resident, a second or third year resident and an attending (a fully trained and certified doctor who could practice independently). Sometimes there are fellows (trainees who have finished residency but are working on speciality certifications like oncology) or medical students. Different teams do it differently, but the basic idea is that there is a certain amount of "work" that needs to be done for each patient and they divide it up. Perhaps the intern (first year resident) will write the note (that serves as the main record for billing and legal purposes as well as to communicate with the rest of the team) and examine the patient thoroughly. The second year resident may double check the key points of the exam, and make sure the labs are adequately treated. The fellow may double check the key key points of the exam, chat with the patient, confer with specialists and then the attending writes the final billing note (mostly referencing the other notes, but summarizing them and especially if he or she disagrees with any of their conclusions, correcting them), examines the most important findings of the patient and answers the patient's questions.
Every patient in the hospital gets that done every day. Every attending or at least every team in the hospital has a list of all the patients they need to see every day. Seeing the patient, checking up on their labs, radiology, any tests or procedures they've had, producing notes and dictations as needed for communications and/or billing, conferring with other doctors who are caring for them, answering the questions, making a plan for getting them moving in the right direction and coordinating their discharge plans are the components of "rounding" on patients. Doing all of those things on all of one's patients is "rounding."
From the patient perspective, what rounding feels like in a teaching hospital is that a collection of people, some together and some separate come in one or more times per day. Here, for me, usually the attending comes in separately towards the end of the day. (Rounds start with sickest patients and discharges first. Also, sickest and most interesting are most likely to be visited by large groups. This explains why I get seen usually by people who are alone and at the end of the day.) In general, you want to listen to the plans of the attending because they are the ones who really decide the plans. Sometimes other people on the team are better at answering questions because they may have more time or more ability to understand what a patient might want in an answer. My current attending, like Dr Hill, is good at answering questions so that is nice, but not all have been.
I get attached to my attendings as they are the ones figuring out my plan and keeping me out of trouble. Because I understand that the attending is really the main cook of the team, no matter how many other junior cooks there are, when my attending changes, I really like to know. Perhaps if I did not understand exactly why the attending role was so vital to me, I might not be so concerned about their coming and going. I mention this mostly because in the past when attendings have left without saying goodbye, I have been unhappy and without a full explanation of how the attending thing works, it might not make that much sense why I would care if just one person on the team changes.
My attending, Dr Meehan, has two more doses of cytarabine planned for me in the next 24 hours and then I get to go home. I am very happy.
I hope you are happy with your short term plans, too.
It was a nice day without a whole lot of excitement (just like we like our days in the hospital). Tommie has been asking for a while that I explain what rounding is, how it works, etc. and it is relevant to the most recent excitement here so I guess it's time.
When a patient is in the hospital, it is important that there is one doctor in charge of them or one ends up with the "too many cooks" syndrome. Therefore, when a patient is admitted, they are given a single "attending" doctor who is their main cook. It is usually the doctor who will care for the problem that most makes the person need to be admitted to the hospital, but not always. Some doctors (mostly specialists) don't have patients on their services and sometimes a patient will come in with, say, a broken hip, but have so many other medical problems that even though the hip brought them in, they are really better served by a doctor who can manage their diabetes, high blood pressure and heart failure. The attending doctor decides which other doctors can be involved in the patient's care, writes the admission and main orders (and in some hospitals, writes all the orders) and is in control of the general course of the patient's care.
Because doctors are human, most doctors admit to "teams" where Dr. A is the day time doctor, Dr. B is the night time doctor and Dr. C will be taking over during the day in three days. Sometimes the "team" aspect of the work is split up even more, especially in teaching hospitals. These teams usually consist of something like a first year resident, a second or third year resident and an attending (a fully trained and certified doctor who could practice independently). Sometimes there are fellows (trainees who have finished residency but are working on speciality certifications like oncology) or medical students. Different teams do it differently, but the basic idea is that there is a certain amount of "work" that needs to be done for each patient and they divide it up. Perhaps the intern (first year resident) will write the note (that serves as the main record for billing and legal purposes as well as to communicate with the rest of the team) and examine the patient thoroughly. The second year resident may double check the key points of the exam, and make sure the labs are adequately treated. The fellow may double check the key key points of the exam, chat with the patient, confer with specialists and then the attending writes the final billing note (mostly referencing the other notes, but summarizing them and especially if he or she disagrees with any of their conclusions, correcting them), examines the most important findings of the patient and answers the patient's questions.
Every patient in the hospital gets that done every day. Every attending or at least every team in the hospital has a list of all the patients they need to see every day. Seeing the patient, checking up on their labs, radiology, any tests or procedures they've had, producing notes and dictations as needed for communications and/or billing, conferring with other doctors who are caring for them, answering the questions, making a plan for getting them moving in the right direction and coordinating their discharge plans are the components of "rounding" on patients. Doing all of those things on all of one's patients is "rounding."
From the patient perspective, what rounding feels like in a teaching hospital is that a collection of people, some together and some separate come in one or more times per day. Here, for me, usually the attending comes in separately towards the end of the day. (Rounds start with sickest patients and discharges first. Also, sickest and most interesting are most likely to be visited by large groups. This explains why I get seen usually by people who are alone and at the end of the day.) In general, you want to listen to the plans of the attending because they are the ones who really decide the plans. Sometimes other people on the team are better at answering questions because they may have more time or more ability to understand what a patient might want in an answer. My current attending, like Dr Hill, is good at answering questions so that is nice, but not all have been.
I get attached to my attendings as they are the ones figuring out my plan and keeping me out of trouble. Because I understand that the attending is really the main cook of the team, no matter how many other junior cooks there are, when my attending changes, I really like to know. Perhaps if I did not understand exactly why the attending role was so vital to me, I might not be so concerned about their coming and going. I mention this mostly because in the past when attendings have left without saying goodbye, I have been unhappy and without a full explanation of how the attending thing works, it might not make that much sense why I would care if just one person on the team changes.
My attending, Dr Meehan, has two more doses of cytarabine planned for me in the next 24 hours and then I get to go home. I am very happy.
I hope you are happy with your short term plans, too.
Monday, September 17, 2012
Day 93 - a lesson on benadryl
After I updated last night, John, who was my resident during induction stopped by to say hi. He was working over night in the hospital and fortunately had a nice chunk of time to come chat with me. We talked a little about leukemia, my head on leukemia, interesting patients we've seen, John's plans for next year, the various joys of medicine. Ira Byock talks about the patients' problems in the hospital being loneliness, boredom and isolation. I don't usually feel visited by any of them, but was starting to see the wisdom of Ira's thoughts. John's kind visit went a long way at helping with those things for me Sunday. Thank you!
Monday I had two visitors planned (which--see above, I needed!), but when I considered today's plans, I was a little worried because I was supposed to get chemo this morning with benadryl and then Terry was going to come visit in the morning and then Ana in the afternoon. I was worried about how I was going to be awake enough to enjoy them and be much fun for them to visit.
The morning started out OK with me able to stay awake and talk with Terry although I felt a little logey and wasn't sure I was making lots of sense. I also felt a little nauseous, like you do when you are overtired. I put up with it and we had a nice visit. Then Terry went to get lunch, I had a short, short nap and we went for a walk. When I woke from my nap, I felt completely refreshed and happy to have only spent a little bit of time in sleep rather than the whole morning as I would usually do.
Terry left, I had lunch, then Ana came and we hung out and then went for a walk. I finished the afternoon feeling great and ready to attempt to face down the benadryl the day after tomorrow. It is nice to think that I may not be forced to sleep by the benadryl unless I want to. ha! take that, you bully!
Other activities for the day included email, reading the new John Irving book, and the old Annals of Internal Medicine. There was a nice article about diabetes management in there and a very, very nice essay called "The Knot" which I would recommend.
Monday I had two visitors planned (which--see above, I needed!), but when I considered today's plans, I was a little worried because I was supposed to get chemo this morning with benadryl and then Terry was going to come visit in the morning and then Ana in the afternoon. I was worried about how I was going to be awake enough to enjoy them and be much fun for them to visit.
The morning started out OK with me able to stay awake and talk with Terry although I felt a little logey and wasn't sure I was making lots of sense. I also felt a little nauseous, like you do when you are overtired. I put up with it and we had a nice visit. Then Terry went to get lunch, I had a short, short nap and we went for a walk. When I woke from my nap, I felt completely refreshed and happy to have only spent a little bit of time in sleep rather than the whole morning as I would usually do.
Terry left, I had lunch, then Ana came and we hung out and then went for a walk. I finished the afternoon feeling great and ready to attempt to face down the benadryl the day after tomorrow. It is nice to think that I may not be forced to sleep by the benadryl unless I want to. ha! take that, you bully!
Other activities for the day included email, reading the new John Irving book, and the old Annals of Internal Medicine. There was a nice article about diabetes management in there and a very, very nice essay called "The Knot" which I would recommend.
Sunday, September 16, 2012
Day 92 - ordinary ordinariness at MHMC
The weather was absolutely perfect New England fall up here. The sun was out, there was a nice breeze. At first, I needed my jacket and sweater and then after I got walking, I could take off my jacket, keep the sweater. There were lots of birds and squirrels out, making all kinds of cute little noises. There were no other people out because the campus empties out on weekends, especially Sundays. I enjoyed my walk very much which was good because I had to work for it a bit.
I woke this morning, beautifully rested. One of my doctors evidently took pity on me and wrote an order for vitals while awake only so I slept through without interruption, then napped when I woke up. Yum! Eight hours of uninterrupted sleep with a two hour nap tacked on, what a dream. I am not sure how to write up the rest of today without making it sound like complaining (especially whining) which I really don't want to do. I mean it to be observation.
So, I woke and ate breakfast. (The nutrition people gave me a default breakfast because for some reason they couldn't get my order straight. I didn't want to waste perfectly good food so I ate it; I don't really like french toast when I'm feeling well and it's good french toast. Ah, well, live and learn--perhaps.) Then I wanted to take a shower and go for a walk. I couldn't take my shower until my port was taped up. Wait for the aid to have some spare time. Shower. Dress.
Ready to go on walk, but Dr. Meehan is rounding. I'm not sure how long he'll be here and don't want to inconvenience him so I wait a while. Then the nurses tell me he seems to have disappeared so I go for my walk. Halfway through I get called back because he's back on the floor. He evidently told them that he would be here for hours and they didn't have to call me which they interpretted as he was leaving imminently and I should come back pretty soon. So I did. Lunch was here (what I ordered--tasty portobello mushroom stuffed with barley). Ate, was rounded upon--I'm doing fine. Talked on phone with Terry, dietary person comes in for tomorrow's choices (unless I want french toast again, I better talk with him--I asked him to return in 5 minutes so I could finish talking with Terry, he returned in 15). Finally, I get to finish my walk which was worth the wait because it had warmed up beautifully and I could take off my jacket after a few minutes and bring it in.
These are not really complaints, but the point is that I am so dependent on other people here that I cannot go for a walk without a half dozen stays and interruptions. I am probably one of the most independent patients in the hospital. I wonder what it is like for the ones who are bedbound, very disabled, have more than one wound that needs to be tended to, multiple doctors who need to round on them, etc. Yikes! Of course, the people who work here have their jobs and are probably just as frustrated by the intersecting needs of the other disciplines and the patients as I am. As a worker, however, I have several tasks to do and if patient one is not available, I can move on to patient two and then circle back to patient one so it's not quite the same as for a patient who really just has one agenda.
Speaking of agendas, for a while today, I thought of nothing but the peanut butter cookies at Au Bon Pain. I was positive they would taste great despite the fact that nothing sweet has tasted great in months. I bought one and, guess what? not delicious. We did stop at the coop on the way in Friday and bought a big bag of salted roasted nuts. These still taste delicious.
Other activities for today have been sudoku, email, reading and chatting on the phone. That's about it for today. Chemo tonight and tomorrow morning.
I hope your interruptions and delays turn out to be useful today and that you have perfect weather for whatever you are wanting to be doing.
I woke this morning, beautifully rested. One of my doctors evidently took pity on me and wrote an order for vitals while awake only so I slept through without interruption, then napped when I woke up. Yum! Eight hours of uninterrupted sleep with a two hour nap tacked on, what a dream. I am not sure how to write up the rest of today without making it sound like complaining (especially whining) which I really don't want to do. I mean it to be observation.
So, I woke and ate breakfast. (The nutrition people gave me a default breakfast because for some reason they couldn't get my order straight. I didn't want to waste perfectly good food so I ate it; I don't really like french toast when I'm feeling well and it's good french toast. Ah, well, live and learn--perhaps.) Then I wanted to take a shower and go for a walk. I couldn't take my shower until my port was taped up. Wait for the aid to have some spare time. Shower. Dress.
Ready to go on walk, but Dr. Meehan is rounding. I'm not sure how long he'll be here and don't want to inconvenience him so I wait a while. Then the nurses tell me he seems to have disappeared so I go for my walk. Halfway through I get called back because he's back on the floor. He evidently told them that he would be here for hours and they didn't have to call me which they interpretted as he was leaving imminently and I should come back pretty soon. So I did. Lunch was here (what I ordered--tasty portobello mushroom stuffed with barley). Ate, was rounded upon--I'm doing fine. Talked on phone with Terry, dietary person comes in for tomorrow's choices (unless I want french toast again, I better talk with him--I asked him to return in 5 minutes so I could finish talking with Terry, he returned in 15). Finally, I get to finish my walk which was worth the wait because it had warmed up beautifully and I could take off my jacket after a few minutes and bring it in.
These are not really complaints, but the point is that I am so dependent on other people here that I cannot go for a walk without a half dozen stays and interruptions. I am probably one of the most independent patients in the hospital. I wonder what it is like for the ones who are bedbound, very disabled, have more than one wound that needs to be tended to, multiple doctors who need to round on them, etc. Yikes! Of course, the people who work here have their jobs and are probably just as frustrated by the intersecting needs of the other disciplines and the patients as I am. As a worker, however, I have several tasks to do and if patient one is not available, I can move on to patient two and then circle back to patient one so it's not quite the same as for a patient who really just has one agenda.
Speaking of agendas, for a while today, I thought of nothing but the peanut butter cookies at Au Bon Pain. I was positive they would taste great despite the fact that nothing sweet has tasted great in months. I bought one and, guess what? not delicious. We did stop at the coop on the way in Friday and bought a big bag of salted roasted nuts. These still taste delicious.
Other activities for today have been sudoku, email, reading and chatting on the phone. That's about it for today. Chemo tonight and tomorrow morning.
I hope your interruptions and delays turn out to be useful today and that you have perfect weather for whatever you are wanting to be doing.
Friday, September 14, 2012
Day 90 and 91 - back to chemo jail
Short entry tonight as Emily is here. I'm fine. We just did a bunch of crossword puzzles. I'm in a double room, but they are having a very late discharge and then I will move into a single. Singles are so much nicer than doubles even with a very nice roommate.
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addedum
The main problem with the double room is that if you have the bed near the bathroom, there is no help for it. The bathroom door opened maybe 3 feet from my bed. The room was so small, there was no where to sit for two to do a crossword puzzle except on the bed and if we faced toward the curtain that separated my half from the roommate's half, she would not have been able to get in and out of bed. So, face the bathroom we did, quite more closely than one would like to be doing. Both of us were supposed to save everything we produced in little hats for the nurses to measure. The very nice roommate had an ileus--basically her GI system wasn't working--which made the whole thing a little more tolerable, but I felt like I couldn't use the bathroom because it was so close--with predictable results.
I was moved to my new single around 9:30. I was incredibly tired, got my benadryl, got my chemo and went to sleep. I don't even remember Emily coming back from brushing her teeth or her making her bed. It was sure nice to see her. Thank you for driving down to see me, Emily!
I woke in the middle of the night with nausea (for the first time during consolidation). I sat up and it passed in about 15 seconds, but just to be on the safe side, I took a compazine which I think gave me a headache. I had my morning chemo, Emily went home and I napped. After my nap, I tried really hard to concentrate enough to do a sudoku, but couldn't so I took another nap. I was really discouraged at being so tired (how am I ever going to be energetic enough to go back to work if I can't even stay awake for an after lunch sudoku?), but after my nap, when I was thinking better, I realized that I napped a lot last time, too. Then I walked around the hospital outside, three times and came back to eat dinner.
I think my port is healing a lot today because it is itchy beyond belief. I don't know why or how it would be healing more enthusiastically the day after chemo than the day before, but I like the idea that it is itchy because it is healing much better than I like the idea that it is itchy because it is about to slough chemo damaged skin, for instance, so I'm going with it.
I hope you are having a nice fall weekend and that the happy explanation is more believable than the less happy one for you, too.
---
addedum
The main problem with the double room is that if you have the bed near the bathroom, there is no help for it. The bathroom door opened maybe 3 feet from my bed. The room was so small, there was no where to sit for two to do a crossword puzzle except on the bed and if we faced toward the curtain that separated my half from the roommate's half, she would not have been able to get in and out of bed. So, face the bathroom we did, quite more closely than one would like to be doing. Both of us were supposed to save everything we produced in little hats for the nurses to measure. The very nice roommate had an ileus--basically her GI system wasn't working--which made the whole thing a little more tolerable, but I felt like I couldn't use the bathroom because it was so close--with predictable results.
I was moved to my new single around 9:30. I was incredibly tired, got my benadryl, got my chemo and went to sleep. I don't even remember Emily coming back from brushing her teeth or her making her bed. It was sure nice to see her. Thank you for driving down to see me, Emily!
I woke in the middle of the night with nausea (for the first time during consolidation). I sat up and it passed in about 15 seconds, but just to be on the safe side, I took a compazine which I think gave me a headache. I had my morning chemo, Emily went home and I napped. After my nap, I tried really hard to concentrate enough to do a sudoku, but couldn't so I took another nap. I was really discouraged at being so tired (how am I ever going to be energetic enough to go back to work if I can't even stay awake for an after lunch sudoku?), but after my nap, when I was thinking better, I realized that I napped a lot last time, too. Then I walked around the hospital outside, three times and came back to eat dinner.
I think my port is healing a lot today because it is itchy beyond belief. I don't know why or how it would be healing more enthusiastically the day after chemo than the day before, but I like the idea that it is itchy because it is healing much better than I like the idea that it is itchy because it is about to slough chemo damaged skin, for instance, so I'm going with it.
I hope you are having a nice fall weekend and that the happy explanation is more believable than the less happy one for you, too.
Tuesday, August 7, 2012
Day 52 - day 4.5 of 5 for consolidation #1
This little masterpiece was painted just today by me and is of the view of my window, bookshelf and outside. It's sort of recognizable, but it turns out the whole perspective thing is a lot harder than it seems intellectually. Here's a photo taken a couple of hours later of what I was trying to paint.
So that is an interesting question: what is my relationship to my work right now? As I am starting to get a little distance on it, I can see that I have been curled up around myself, protecting myself, just doing my leukemia stuff. Now, I'm a little better and I feel a little more out in the world, no longer like the only thing I can do with myself is to protect and heal myself. But I am not ready to be out in the world completely. I think when Cara asked if I could see the light at the end of the tunnel, part of why I couldn't is because it is too scary to. It's really nice to be in this place where I am monitored closely, my bone marrow is constantly peaked in at and the leukemia is beat back repeatedly. At some point, I'll have to turn my orientation around, face outward, and trust that the leukemia only needs occasional monitoring. I have felt badly because I'm not really all that interested in going back to work yet, but I think it is not reasonable to expect myself to be interested yet as I am still actively involved in killing leukemia cells.
In my mind, I started out June without leukemia. Then I spent June and July integrating "I have leukemia" into my view of myself. Perhaps August will be about turning down the volume on "I have leukemia" and finding the knobs that say other things.
Wanna hear some thoughts about teaching rounds? I thought so. I have had a whole bunch of attendings round on me by now and they all do it differently. They also do it differently during the week and on weekends and I have had lots of both kinds of days. Some round with the whole team (intern, resident, fellow and attending) which can be really overwhelming; not much chance for an intimate conversation with anyone if there are three other people standing around. Also, hard to find four chairs so everyone just stands around, looks awkward, does their thing quickly and gets out. The advantage is that it's quick for everyone--none of those pesky conversations need be had. Also, if people are really good at patient interactions or if a patient has a really interesting physical finding, this method maximizes the chance that everyone gets to see it, and increases the modelling opportunities for learnees with good attendings. Let me stress, however, from the patient's point of view--unless everyone on the team is devoid of personality and one wants to get the team gone as soon as possible--it's not the nicest method or at least not exclusively.
On the other hand, having each team member visit individually can be kind of wearing too. As noted above, there are four team members and having each one come in separately and ask the same questions, do the same exam can be a little tiring. This method makes for really nice conversations usually and it often feels sad to me that no one is able to learn from them besides me and the person I'm having them with.
It is almost always the person with the most seniority who speaks to the patient and this should also be varied. It is good for the junior people to get some supervision interacting with patients while it's also good for them to see the more senior people who presumably are better at it interacting too.
Some teams will round with two small groups: attending/trainees; attending+intern/fellow+resident; etc. I think mixing it up frequently so that the advantages of all the different methods are available is the best plan. I think that having people round in whatever format makes them least comfortable is probably a good experience while in training too. The quiet one who prefers not to lead the conversation should be getting the practice leading, the chatty one who doesn't like so much to listen should be getting some practice there.
Two doses of consolidation #1 left for me. This dose I get to sleep thru and tomorrow's dose I get to go home after. I'm off to brush my teeth and get my benadryl. I hope you have pleasant dreams.
Monday, August 6, 2012
Day 51
Today was another pleasant and quiet day. I got chemo in the morning with benadryl so I enjoyed a nice little morning nap. However, the number of people who interrupted me was phenomenal: rounding team, nutrition, dietary x 2, housekeeping. Nursing and aids came in to check on me, but didn't wake me up to make sure I was sleeping comfortably which I appreciated. At the end, when I was almost ready to wake up a volunteer I am quite fond of came in to chat so I did rouse myself completely and we chatted awhile. I went for a walk outside around the hospital three times which my iphone says is three miles and then returned to reading, computing, etc. Sadly, one of my resident friends from last admission came by to say hi, while I was out walking so I missed him. I hope he will try tomorrow.
I can't remember if I have mentioned how nice it is to not be neutropenic and to be able to step out of my room to ask a question or get something and how really fabulous it is to be able to walk outside. It makes being here much much nicer. My last admission if I so much as stuck my head outside the door, I was supposed to mask up. Then when I came back in, I felt like I needed to sanitize anything that had been outside of the room. This meant that if I needed something, it was much easier to just push my button and let the world come to me. Now that I can go out easily, I can walk out and get what I want. I can have my door open which for some reason I really like to do when I nap. I can walk around outside. It's nice. One loses track of things like that in normal life.
The view from this window is really nice, too. I can see the playground from my window and am treated to young families relaxing from time to time while their kids run around. It's a very pleasant view. I am only one room over from my last one, but the view, similar in that it has pine trees, a walking path, sky and general pastoral kind of scene, is also strikingly different in that I can see more of the building, the playground, a picnic table and a little patch of parking lot. There are more hummingbirds for sure and I do not know if it time of year, angle of the window to the sun, the fact that it's more of a protected alcove or something I didn't even think of, but there are at least 10 hummingbird sightings a day in this room every day so far.
In other news, no rash, no chemo tonight or tomorrow am and probably more Daria tonight. I am still really enjoying "When we were the Kennedys" which I read a couple chapters of today. I am trying not to read too much at a time because I know I'll be sad when it ends. The central event (so far?) of the book is her father's death when she was 9. It feels to me like she gets exactly right what it is like to be the left behind child at such a young age. I have not seen anyone else show what that time is like for the child so well elsewhere. The book is set in Mexico, Maine in the fifties. It's funny to me that her childhood is kind of near here and only ten years before mine, but a totally different time. If you are in need of something to read, I highly recommend it (with the caveat that I haven't finished it yet).
I hope you have good options for your evening also and will see you tomorrow for a likely nother slow news day.
I can't remember if I have mentioned how nice it is to not be neutropenic and to be able to step out of my room to ask a question or get something and how really fabulous it is to be able to walk outside. It makes being here much much nicer. My last admission if I so much as stuck my head outside the door, I was supposed to mask up. Then when I came back in, I felt like I needed to sanitize anything that had been outside of the room. This meant that if I needed something, it was much easier to just push my button and let the world come to me. Now that I can go out easily, I can walk out and get what I want. I can have my door open which for some reason I really like to do when I nap. I can walk around outside. It's nice. One loses track of things like that in normal life.
The view from this window is really nice, too. I can see the playground from my window and am treated to young families relaxing from time to time while their kids run around. It's a very pleasant view. I am only one room over from my last one, but the view, similar in that it has pine trees, a walking path, sky and general pastoral kind of scene, is also strikingly different in that I can see more of the building, the playground, a picnic table and a little patch of parking lot. There are more hummingbirds for sure and I do not know if it time of year, angle of the window to the sun, the fact that it's more of a protected alcove or something I didn't even think of, but there are at least 10 hummingbird sightings a day in this room every day so far.
In other news, no rash, no chemo tonight or tomorrow am and probably more Daria tonight. I am still really enjoying "When we were the Kennedys" which I read a couple chapters of today. I am trying not to read too much at a time because I know I'll be sad when it ends. The central event (so far?) of the book is her father's death when she was 9. It feels to me like she gets exactly right what it is like to be the left behind child at such a young age. I have not seen anyone else show what that time is like for the child so well elsewhere. The book is set in Mexico, Maine in the fifties. It's funny to me that her childhood is kind of near here and only ten years before mine, but a totally different time. If you are in need of something to read, I highly recommend it (with the caveat that I haven't finished it yet).
I hope you have good options for your evening also and will see you tomorrow for a likely nother slow news day.
Day 50
A nice quiet day with some good visitors, chemo in the evening. Who could ask for more?
My morning was very quiet and pretty non-eventful then Terry came, we had lunch, went for a walk and then he left and Eva and John came for a while. We covered lots of things the way conversations with Eva and John tend to do. They asked about what qualities in nurses I find most wonderful. I had just been thinking about it and certainly on the rare occasions I was actually sick, I really appreciated the nurses who acted as though they had seen this before and knew what to do and who were able to get me feeling better. The rest of the time, I appreciate kindness and efficiency. John said that he had found nurses who were able to make whatever was happening seem normal to be very comforting. Nurses who seem like they are interested in me specifically and not just me, the AML patient, are also viewed positively. Staff who are annoyed by taking care of me are not viewed positively ("What do you want?" is not an acceptable answer to a call light, for example.)
Not much else to report on from yesterday. The weather is beautiful, the grounds are gorgeous, the food is ok, the staff is kind, the chemo is salty, the rash is better and the visitors could not have been more congenial.
My morning was very quiet and pretty non-eventful then Terry came, we had lunch, went for a walk and then he left and Eva and John came for a while. We covered lots of things the way conversations with Eva and John tend to do. They asked about what qualities in nurses I find most wonderful. I had just been thinking about it and certainly on the rare occasions I was actually sick, I really appreciated the nurses who acted as though they had seen this before and knew what to do and who were able to get me feeling better. The rest of the time, I appreciate kindness and efficiency. John said that he had found nurses who were able to make whatever was happening seem normal to be very comforting. Nurses who seem like they are interested in me specifically and not just me, the AML patient, are also viewed positively. Staff who are annoyed by taking care of me are not viewed positively ("What do you want?" is not an acceptable answer to a call light, for example.)
Not much else to report on from yesterday. The weather is beautiful, the grounds are gorgeous, the food is ok, the staff is kind, the chemo is salty, the rash is better and the visitors could not have been more congenial.
Saturday, August 4, 2012
Day 49
Today was a day dominated by logistics. I got yesterday's dose of chemo through a peripheral IV but they don't like to do that because it's kind of hard on the vein and can lead to scarring so the vein can't be used again for anything else. Also, things like leaking are more likely to go wrong with peripheral IVs so they wanted a PICC in me as soon as it was logistically possible. I wasn't sure when it was going to happen so I spent my day getting little updates from people. The PICC inserter asked me to consent you so maybe you're next, etc. My friend John from induction came by to say hi, but then had to leave because the cafeteria makes a very small collection of vegetarian food on Saturday and he is a strict vegetarian. Soon after the notice that I was next for the PICC came and I got my ativan. Then Ira came by and I was a little out of it and they came to take me away for my PICC before we could get to talk much at all.
You may recall getting my PICC last time was a tough proposition. They stuck me 4 or 5 times and concluded that my veins were very spasm-y and that ativan would be just the ticket for me. I must admit my nose was a little out of joint, feeling like they thought I was "just a crazy woman," but I would give it a chance because if they were right I'd have a painless PICC and if they were wrong I'd have a great blog post. I did not calculate out what I would do if they were in the middle and it still took 4 sticks, but this time it was because my anatomy is tough. Evidently all my veins instead of getting bigger and coalescing on the way to my heart, divide and get smaller on the way up until they get to my armpit, then they unite and form a vein big enough to put a PICC in. One would not want a PICC right in the armpit for infection control reasons due to sweating and skin bacteria and the difficulty of keeping a mobile place like that clean so she kept trying for a spot in my upper arm that was big enough. She found one on try four. I, of course, wonder what connection the spasms and size of my blood vessels have. I did notice that today's inserter seemed to be slower and more gentle as she pushed the catheter in and to wait longer before advancing it again. I don't know what effect if any this might have had either. I really wonder, of course, if the ativan made any difference at all.
At any rate, she said next time I should not even bother with the RN PICC crew and just plan on getting it done in interventional radiology. Each time I get a PICC they up the ante. I am excited to find out what the interventional radiologist will suggest. I'm guessing a different kind of device or maybe amputation.
After the PICC which although I didn't do anything besides lie there and be distracted by the radiology tech totally exhausted me, I came back and jumped in bed. Then my nurse gave me benadryl with the predictable response. I asked them to keep my room door open while I napped because I prefer feeling like life is going on around me while I nap. The nurse's station is about 10 steps from my door and I was not aware of anything that happened there. When I woke at 5:30, some one had delivered dinner which I didn't even wake for. Eventually I ate, went for a nominal two mile walk on the fifth floor and am trying to decide for my next activity if I should watch Daria DVDs or read the new blood transfusion recommendations.
Choices. Choices. I'm lucky to have some good ones. May you too.
You may recall getting my PICC last time was a tough proposition. They stuck me 4 or 5 times and concluded that my veins were very spasm-y and that ativan would be just the ticket for me. I must admit my nose was a little out of joint, feeling like they thought I was "just a crazy woman," but I would give it a chance because if they were right I'd have a painless PICC and if they were wrong I'd have a great blog post. I did not calculate out what I would do if they were in the middle and it still took 4 sticks, but this time it was because my anatomy is tough. Evidently all my veins instead of getting bigger and coalescing on the way to my heart, divide and get smaller on the way up until they get to my armpit, then they unite and form a vein big enough to put a PICC in. One would not want a PICC right in the armpit for infection control reasons due to sweating and skin bacteria and the difficulty of keeping a mobile place like that clean so she kept trying for a spot in my upper arm that was big enough. She found one on try four. I, of course, wonder what connection the spasms and size of my blood vessels have. I did notice that today's inserter seemed to be slower and more gentle as she pushed the catheter in and to wait longer before advancing it again. I don't know what effect if any this might have had either. I really wonder, of course, if the ativan made any difference at all.
At any rate, she said next time I should not even bother with the RN PICC crew and just plan on getting it done in interventional radiology. Each time I get a PICC they up the ante. I am excited to find out what the interventional radiologist will suggest. I'm guessing a different kind of device or maybe amputation.
After the PICC which although I didn't do anything besides lie there and be distracted by the radiology tech totally exhausted me, I came back and jumped in bed. Then my nurse gave me benadryl with the predictable response. I asked them to keep my room door open while I napped because I prefer feeling like life is going on around me while I nap. The nurse's station is about 10 steps from my door and I was not aware of anything that happened there. When I woke at 5:30, some one had delivered dinner which I didn't even wake for. Eventually I ate, went for a nominal two mile walk on the fifth floor and am trying to decide for my next activity if I should watch Daria DVDs or read the new blood transfusion recommendations.
Choices. Choices. I'm lucky to have some good ones. May you too.
Friday, August 3, 2012
Day 48 consolidation with an update
I am currently in Room 112, next door to my old room awaiting consolidation chemo. This is so different from induction. Maybe the biggest difference is with induction, I got my diagnosis on the day of admission and this time I have been sitting with it for over a month. With induction, I had no clue of what was coming, now I do. At this point in the last admission, I was completely in denial that I had leukemia; I was pretty sure my labs were so terrible because of a medication effect or a lab error. At this point, I get that I have leukemia.
The funny thing about it is that I feel pretty darned good and my labs are completely normal. It is a very odd situation to take a patient who feels well and whose labs look good and give them a medication that will make them feel awful and mess up their labs. I am a total believer, however, and am ready for it!
It is funny to be back. I know all of the nurses and aids pretty well so far except tonight's nurse! He was on vacation for the first two weeks of my first stay and then managed to spend two weeks in the unit never having me. He said that he thinks he may have checked blood or responded to a light in the middle of the night for me at some point, but he had never really taken care of me. It's odd because most of the people here have had me multiple times. It doesn't seem that he was avoiding me so I think he's OK with taking care of me now.
Dinner was just like old times (except I was hungry tonight) and my stroll was way better than old times because I did it outside! I walked around the whole hospital twice. Once on the sidewalks and the second time taking the paths through the wooded areas. It was lovely. I forgot to bring my sunhat so I bought myself a canvas hat with a UVF rating of 40, no less, at the hospital gift shop. Now I look sort of like Crocodile Dundee. Or something.
It feels a little different to be here too. Maybe because I was here for so long last time, I felt like it was my hospital and I kind of belonged here. This time I feel a little like an imposter. Maybe that feeling will go away when I start chemo. I felt very odd walking the hallways, like if some one had questioned me about my patient wristband, I would have had to admit that I wasn't exactly a sick person. This is not necessarily a bad development.
I continue standing by for chemo.
------update
Evidently there was a snafu with my order, the wrong hydration was ordered, they eyedrops didn't come in in time, etc. so the chemo started at 10 or 10:30 instead of the planned 8. Because I had such a good rash last time, they gave me some "pre-meds" to decrease it--benadryl and decadron. I have had benadryl with my last admission and it puts me right to sleep. I have never had steroids and was very afraid that I might get some parts of the anxious/sleepless/hungry triad that steroids often give to people. Turns out 12.5 mg of benadryl is mightier than 20 mg of decadron for me. They do the pre-meds maybe an hour before they start the chemo so they're working when the chemo starts. I went right to sleep and barely remember the nurse waking me for chemo. I think it is fair to say that I tolerated it well.
This morning I have what may be an area of rash smaller than a dime on one finger (or it may be a bug bite) and nothing else.
Good job, team!
The funny thing about it is that I feel pretty darned good and my labs are completely normal. It is a very odd situation to take a patient who feels well and whose labs look good and give them a medication that will make them feel awful and mess up their labs. I am a total believer, however, and am ready for it!
It is funny to be back. I know all of the nurses and aids pretty well so far except tonight's nurse! He was on vacation for the first two weeks of my first stay and then managed to spend two weeks in the unit never having me. He said that he thinks he may have checked blood or responded to a light in the middle of the night for me at some point, but he had never really taken care of me. It's odd because most of the people here have had me multiple times. It doesn't seem that he was avoiding me so I think he's OK with taking care of me now.
Dinner was just like old times (except I was hungry tonight) and my stroll was way better than old times because I did it outside! I walked around the whole hospital twice. Once on the sidewalks and the second time taking the paths through the wooded areas. It was lovely. I forgot to bring my sunhat so I bought myself a canvas hat with a UVF rating of 40, no less, at the hospital gift shop. Now I look sort of like Crocodile Dundee. Or something.
It feels a little different to be here too. Maybe because I was here for so long last time, I felt like it was my hospital and I kind of belonged here. This time I feel a little like an imposter. Maybe that feeling will go away when I start chemo. I felt very odd walking the hallways, like if some one had questioned me about my patient wristband, I would have had to admit that I wasn't exactly a sick person. This is not necessarily a bad development.
I continue standing by for chemo.
------update
Evidently there was a snafu with my order, the wrong hydration was ordered, they eyedrops didn't come in in time, etc. so the chemo started at 10 or 10:30 instead of the planned 8. Because I had such a good rash last time, they gave me some "pre-meds" to decrease it--benadryl and decadron. I have had benadryl with my last admission and it puts me right to sleep. I have never had steroids and was very afraid that I might get some parts of the anxious/sleepless/hungry triad that steroids often give to people. Turns out 12.5 mg of benadryl is mightier than 20 mg of decadron for me. They do the pre-meds maybe an hour before they start the chemo so they're working when the chemo starts. I went right to sleep and barely remember the nurse waking me for chemo. I think it is fair to say that I tolerated it well.
This morning I have what may be an area of rash smaller than a dime on one finger (or it may be a bug bite) and nothing else.
Good job, team!
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