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.
Monday, August 6, 2012
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!
Thursday, August 2, 2012
Day 47--update
Tomorrow is back to chemo jail (and probably more on that later) but in the meantime I can tell my brain is trying hard to synthesize the experiences it's had so far and last night while I was trying to fall asleep, it brought this up.
I can recall two times for sure and think there were more when a doctor asked me a question that could have a short (one to two words) answer or a long (three or four paragraphs) answer. Being aware that doctors are busy people in general, but that sometimes work is piled up and sometimes it's sparse, I ask in this situation, "That could have a long or short answer. Do you have time for the long answer?" I think if a patient presented me with this, I would say "Of course, I do!" I only asked this question of a few doctors because there were clearly doctors who would like all answers to be given in less than one syllable and these doctors would get the short answer without question and there were other doctors who I was comfortable enough with that I just talked and didn't consider what I was going to say before it popped out of my mouth.
Anyway, for two out of two times that I can for sure remember the details of, the request was for the short answer. This seems a pity--a real lost opportunity. One time was for a doc who only saw me once and with whom I didn't need to have a relationship at all (unless something had gone wrong that night, then a relationship would have been very comforting). The other was with a regular member of my team who had a meeting to get to that day and thus was too busy to hear the long version of the story.
I've said part of my piece before about how one of the most important tools we doctors have for healing our patients is ourselves. With the drive by doctor, s/he did their thing with me, wrote their note and got on with their shift. Nothing life threatening happened to me that night, but it could have because my clinical situation was a little unstable at that point (and the drive by doctor had no way of knowing how likely it was that something bad would happen because this was a new development). If I had developed a life threatening condition later in their shift, I would have had no choice but to be treated by a person who had passed up on an offer to find out a tiny bit about who I was. How could they possibly treat my life threatening condition when they didn't know (and had turned down an opportunity to find out about) my life? Maybe they thought I would be still describing my childhood on the farm twenty minutes later, maybe they thought once they unleashed the demon chat that it would never be put back in the bottle, maybe they really did have a patient somewhere else in the hospital who really needed their attention. None of that have been at all relevant if I were the patient being transferred to the intensive care unit (which fortunately I have never been).
So, maybe I should just not offer people a choice and decide to give everyone the quick answer or to force everyone to understand an extra three paragraphs worth of material about me. (you've just done it--it's not that painful, right?) For me to make this decision feels like a lost opportunity for me (and for them). The docs I make this offer to are the ones I have not decided if I am comfortable. Hearing "yes, please spend a few extra moments telling me about yourself" would have answered the question for me forever. This would have been a doctor I'd forgive almost anything of down the line. Hearing "I'm too busy right now (especially with a good excuse), but would love to hear it later" if followed up even briefly the next day would have the same result. For the doc, to express interest in a patient and have it not take an extra twenty minutes (which it wouldn't in my case) might be a practice altering moment.
Well, I'm going to try to continue providing those practice altering moments to the docs who take care of me. May I recognize those the world offers to me.
----
update #1
chemo jail starts at 1 pm tomorrow. I'll go find the suitcase.
I can recall two times for sure and think there were more when a doctor asked me a question that could have a short (one to two words) answer or a long (three or four paragraphs) answer. Being aware that doctors are busy people in general, but that sometimes work is piled up and sometimes it's sparse, I ask in this situation, "That could have a long or short answer. Do you have time for the long answer?" I think if a patient presented me with this, I would say "Of course, I do!" I only asked this question of a few doctors because there were clearly doctors who would like all answers to be given in less than one syllable and these doctors would get the short answer without question and there were other doctors who I was comfortable enough with that I just talked and didn't consider what I was going to say before it popped out of my mouth.
Anyway, for two out of two times that I can for sure remember the details of, the request was for the short answer. This seems a pity--a real lost opportunity. One time was for a doc who only saw me once and with whom I didn't need to have a relationship at all (unless something had gone wrong that night, then a relationship would have been very comforting). The other was with a regular member of my team who had a meeting to get to that day and thus was too busy to hear the long version of the story.
I've said part of my piece before about how one of the most important tools we doctors have for healing our patients is ourselves. With the drive by doctor, s/he did their thing with me, wrote their note and got on with their shift. Nothing life threatening happened to me that night, but it could have because my clinical situation was a little unstable at that point (and the drive by doctor had no way of knowing how likely it was that something bad would happen because this was a new development). If I had developed a life threatening condition later in their shift, I would have had no choice but to be treated by a person who had passed up on an offer to find out a tiny bit about who I was. How could they possibly treat my life threatening condition when they didn't know (and had turned down an opportunity to find out about) my life? Maybe they thought I would be still describing my childhood on the farm twenty minutes later, maybe they thought once they unleashed the demon chat that it would never be put back in the bottle, maybe they really did have a patient somewhere else in the hospital who really needed their attention. None of that have been at all relevant if I were the patient being transferred to the intensive care unit (which fortunately I have never been).
So, maybe I should just not offer people a choice and decide to give everyone the quick answer or to force everyone to understand an extra three paragraphs worth of material about me. (you've just done it--it's not that painful, right?) For me to make this decision feels like a lost opportunity for me (and for them). The docs I make this offer to are the ones I have not decided if I am comfortable. Hearing "yes, please spend a few extra moments telling me about yourself" would have answered the question for me forever. This would have been a doctor I'd forgive almost anything of down the line. Hearing "I'm too busy right now (especially with a good excuse), but would love to hear it later" if followed up even briefly the next day would have the same result. For the doc, to express interest in a patient and have it not take an extra twenty minutes (which it wouldn't in my case) might be a practice altering moment.
Well, I'm going to try to continue providing those practice altering moments to the docs who take care of me. May I recognize those the world offers to me.
----
update #1
chemo jail starts at 1 pm tomorrow. I'll go find the suitcase.
Day 46 bonus
I spoke with Cara on the phone and she asked if I could see "the light at the end of the tunnel" because she could. I really hadn't thought that far ahead and couldn't see it, but I've been thinking since then that some day in the future when I list the most relevant factoids about myself that I had (I'll get to use the past tense then) AML will not be in the top ten.
Kinda cool.
Kinda cool.
Wednesday, August 1, 2012
Day 46
Today's post is mostly an excuse to show you pictures. I am not sure how to get the post formatted properly, but since the top picture shows the untamed broccoli, cauliflower and beets that were taken over by grass and the bottom one shows my handiwork at digging them out of a months' worth of overgrown, it is somewhat fitting that the formatting is untamed. Since digging them out, we have had two rainstorms and I am sure that they are all about 10% larger than they were in the second picture. We'll see if we get any actual edible things out of it, but mostly we grow a garden for entertainment.
The other pictures to show today are the weaving ones. I am trying to learn about double weaving which is where you weave a two sided piece of cloth and am having some technical difficulties which I think are mostly caused by my decision to use a long warp so I could just do a lot of different experiments in a row. The yarn at the edges is sliding off the wrap of yarn at the back and stretching differently than the rest of the yarn, leading to tighter, unhappy edges and looser unhappy middles. I have a hokey fix involving bolstering the distance the middle yarn has to travel, but it doesn't work very well and is ugly. the other solution is to just keep cutting the coasters off the loom and re-tying the warp on. Time consuming, but each time I do it, I get to experiment with a different way of solving the problem--all have been equally unsuccessful to date. I think the real solution is that I will not use a long dense warp again if I can help it.
Anyway, here they are. Each has exactly the same warp (the long thread that goes from fringe end to fringe end) and the differences are because I used different weft (the thread that goes perpendicular to the warp). Some of the wefts are one colored, some are two colored and the first coaster has three colors of weft in it (yellow, light green and dark green). All the warps are three colors (yellow, light and dark green).
 |
| Side A |
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| All coasters stay in the same position, but flip over onto your bellies so we can see your other side. |
She got this wild reversible vest that has fake fur on what she will wear as the inside and a knitted gray exterior. It actually looks good with almost everything else she picked out and the clothes she wore there so it seems like a good find. She also picked out a light gray blazer, a gorgeous dress, a black cardigan, a nice pair of jeans (that were specifically checked with the new fringed boots of two days ago's post) and several new shirts. A backpack completed the look and we are officially done with back to school shopping except for supplies which the school has not informed us about yet.
Ellie is leaving for drama camp in the middle of August and coming back the Saturday (Aug 25) before the Monday (aug 27) school starts on. I will hopefully be all recovered from HIDAC then and--God willing and the creek don't rise--will be able to get her happily to Middle School for the first time. (first time in Middle School, not first time there happily)
The next step in our grand plan is for me to go to bed so I wish you good dreams and happy starts.
Tuesday, July 31, 2012
Day 45 thoughts on doctors and dogs
Today Ana brought her beautiful German Shepherd, Rykka, over to go for a walk with Maggie and you can see the results below. Maggie will defer to all dogs so she lost her tennis ball for a while. We had a great time and both dogs went home and slept for ages which is, of course, the whole point of the exercise.
I went for a trial run of a little running yesterday and probably ran 1 mile spread out over a 2.5 mile expedition so with the two events together I got a fair amount of exercise. I was so tired this afternoon that I took my first nap in a couple of weeks. I was, of course, worried that this meant Something Bad was going on--leukemia is sapping all my strength; I have mysteriously stopped making red blood cells and am now way anemic. I tell my patients who are cancer survivors that for the rest of their life, whenever something goes wrong with their body, their first thought will be that this is the cancer back. My patients tell me that after about ten years that the hypervigilance fades. I'll let you know in 2022.
In a related topic, I have been aware (and I think I've talked about this here) that one of the main things doctors do for their patients is to hold worries for them. I am worried about relapsing; a lot of my patients are worried about not being able to live independently; people worry about being short of breath or in pain or alone or scared and not having the help they need. Dr. Hill cannot tell me that I won't relapse; I cannot tell my patients they will be able to live independently forever or promise them that I can fix their symptoms--even a very unsophisticated patient could tell that those are not things that can be promised to them. What I want Dr. Hill to do for me is to say, "we'll watch you closely for signs of relapse; we'll check your labs and do bone marrows a lot and if you relapse we'll catch it early and treat it aggressively." I want to take my worry which feels like a huge shopping bag, so weighty that I am afraid it will burst the handles off the bag and hand it to Dr. Hill. Somehow when he takes it from me, it magically morphs into a tiny grain which he can put in his pocket and which only weighs a little bit for him. He has a whole pocket full of them so it's not like he is carrying nothing, but it's not the back breaking load for him that it was for me.
That is part of the magic and privilege of being a doctor. I've been on the other end of that a lot and can tell that just handing the worry over to me is therapeutic for people. I have held the weight in my hand and seen how it feels to me: what its heft and size is, how it nestles right in with the others in my pocket when I drop it in. Now that I've been on both sides, I can see the magical transformation and feel the change in dimensions.
I think the difference between the worry the patient feels and the worry the doctor feels is two fold. For me, it is difficult to think beyond what would happen if I relapsed (or for my elderly patients to think what would happen if they could not live safely at home). There is just this whole terrifying territory out there. Dr. Hill has seen lots of relapses and he knows just what we would do. He has a plan. He is not helplessly paralyzed with worry because he is an experienced guide. The other difference of course is that the experience is different for us. Dr. Hill would be a guide in the territory of relapse. I would go live there. My experience of my patient's loss of independence is purely empathetic and not experiential either. I know that Dr. Hill would be sad if I relapsed, but not as sad as I would be which is what makes the worry shrink to something he can handle. I think the real magic is that, knowing that it is not the same burning issue for him that it is for me, I can still hand over the worry to him and it is relieved for me. It really works if he accepts it properly.
Magic--that is what I do for a living. I am a magician. I am grateful to my magicians and yours.
 |
| They look like they are in a desert, but it's just a road at PEA. Both dogs are wet from their time in the river and look who has the tennis ball. |
 |
| I love this picture of Maggie. It is hard to get a good picture of her because she usually looks like a huge shadow. I have the tennis ball and she is ready for me to throw it! |
 |
| The correct order has been restored to the world and Maggie has the tennis ball again. |
In a related topic, I have been aware (and I think I've talked about this here) that one of the main things doctors do for their patients is to hold worries for them. I am worried about relapsing; a lot of my patients are worried about not being able to live independently; people worry about being short of breath or in pain or alone or scared and not having the help they need. Dr. Hill cannot tell me that I won't relapse; I cannot tell my patients they will be able to live independently forever or promise them that I can fix their symptoms--even a very unsophisticated patient could tell that those are not things that can be promised to them. What I want Dr. Hill to do for me is to say, "we'll watch you closely for signs of relapse; we'll check your labs and do bone marrows a lot and if you relapse we'll catch it early and treat it aggressively." I want to take my worry which feels like a huge shopping bag, so weighty that I am afraid it will burst the handles off the bag and hand it to Dr. Hill. Somehow when he takes it from me, it magically morphs into a tiny grain which he can put in his pocket and which only weighs a little bit for him. He has a whole pocket full of them so it's not like he is carrying nothing, but it's not the back breaking load for him that it was for me.
That is part of the magic and privilege of being a doctor. I've been on the other end of that a lot and can tell that just handing the worry over to me is therapeutic for people. I have held the weight in my hand and seen how it feels to me: what its heft and size is, how it nestles right in with the others in my pocket when I drop it in. Now that I've been on both sides, I can see the magical transformation and feel the change in dimensions.
I think the difference between the worry the patient feels and the worry the doctor feels is two fold. For me, it is difficult to think beyond what would happen if I relapsed (or for my elderly patients to think what would happen if they could not live safely at home). There is just this whole terrifying territory out there. Dr. Hill has seen lots of relapses and he knows just what we would do. He has a plan. He is not helplessly paralyzed with worry because he is an experienced guide. The other difference of course is that the experience is different for us. Dr. Hill would be a guide in the territory of relapse. I would go live there. My experience of my patient's loss of independence is purely empathetic and not experiential either. I know that Dr. Hill would be sad if I relapsed, but not as sad as I would be which is what makes the worry shrink to something he can handle. I think the real magic is that, knowing that it is not the same burning issue for him that it is for me, I can still hand over the worry to him and it is relieved for me. It really works if he accepts it properly.
Magic--that is what I do for a living. I am a magician. I am grateful to my magicians and yours.
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