Friday, November 30, 2012

Day 167 - out carousing

Ellie was unexpectedly invited to spend the night at her friend's house so we took advantage and went out. I'm continuing to do well, and will post tomorrow. I hope you have a good night.

Thursday, November 29, 2012

Day 166 - no news about anything

I have a really really nice winter coat that we bought sixteen years ago when we moved from California to Minnesota and I was scared about the winters. It is the warmest winter coat we could find anywhere and it is really warm. It goes to the mid thigh and it has a waterproof covering (like you don't get wet in the rain) and a hood and is super thick. It also weighs about ten pounds. All this weight never really bothered me before, but this year, it does.  I don't know if it's because I'm a weakling and it's a lot to schlep around or if it's because Ellie has a gorgeous light "down sweater" kind of jacket, but I have decided I need a lighter, but still super warm winter jacket. Today was mostly spent at various outdoor stores trying on jackets and coats of all varieties. I also called the Patagonia 800 number to find out which of their jackets is their very warmest. It turned out to be a good thing I called because their warmest is not in their catalog nor is it in any store closer than Boston. I am currently favoring that one. We'll see. I have bought a pair of pants and a skirt since my diagnosis five months ago and I don't think any other clothes at all so I guess it's not unreasonable to buy a really really nice coat.

A lot of today was spent chasing around after the ideal winter coat, but I found time to do the NYT crossword puzzle which I kind of liked today and to go to Planet Fitness. I was able not just to almost hit my goal heart rate today, but to stay there a brief while. I am still telling the machine that I am 70 years old so it gives me a goal heart rate that I can tolerate getting to, but I feel like I've made a little progress. Additionally, I did some weaving and some assistance with homework. There were almost tears. The whole beginning algebra thing is very frustrating it turns out.

In other news, there is no other news today. I am wishing for a robust and permanent recovery for myself. For you, a healthy tomorrow.

Wednesday, November 28, 2012

Day 165 - actual leukemia news

It's all very complicated. Back in July (remember back then?) when I had my post induction bone marrow biopsy to prove that my marrow was officially "empty," they sent off a bunch of tests. These tests were prognostic markers of various sorts and John wasn't sure if they would be meaningful because there was not any visible leukemia left (i.e., if they came back with "no marker found," it could be because the marker wasn't there or because there wasn't enough leukemia for it to be seen). The markers are supposed to be run on the first bone marrow biopsy material--the one that the diagnosis comes from--but they didn't for complicated logistical reasons. We knew there was still leukemia even in the "empty" bone marrow biopsy because if you stopped treatment after only induction, the leukemia inevitably comes back; it was just not something we could actually see or identify even with a microscope. The most important test (a marker for badly behaved leukemia) came back negative. Did this mean the leukemia didn't have this marker or did it mean there was no leukemia left to find the marker in? There was no way to find out.

Back in July a different one of them came back positive, but in the general flood of tests and information, it was not noticed. Just recently John was going over my file to present it to the second opinion guy. He noticed that NPM1 was positive. This is a marker that is positive in "wimpy" leukemias, ones that tend to respond well to chemo. This is very exciting news and offers further hope for my not needing to do anything further to get rid of this leukemia and is encouraging for it not returning in the future. Excellent news!

I am still planning on getting a second opinion just because I would much rather do it now and not need it than look back with regret at some point in the future, wishing I had done it. Dr. Hill said he spoke with Dr Stone who agreed to see me and that the Dana Farber will be calling me at some point to set it up. I highly suspect he will say, "thanks for the visit; nothing further needed," but will be glad to have it said.

We checked my labs today. Good, good, good. My hemoglobin is slowly climbing. It is now all the way up to 10. This is the first time in a while that I have been in double digits. I can't say that 10 feels any different from 9.3, but I'm holding out for 12.

I also had a bone marrow done today which (continuing the good NP Beth's streak) did not hurt. She had a very hard time getting in, however and I think I may be sore tomorrow. 

Today's final activity was a CT scan of my chest and darned if it's still not normal! The previous nodules have gone away which is good, but now there is some smutzy stuff that looks kind of like pneumonia except I don't have a fever or a cough. I'm going to get a visit with a pulmonologist to sort it out.

One final thing that happened today that really brought home the whole recovery thing to me. I had to use the bathroom in the cancer center and when I went in, I had a quick little flashback kind of event to the previous time I had used it. I had been feeling very fragile then and decidedly don't feel that way now. What does it feel like to "feel fragile"? Very much on alert, because anyone could knock into me and knock me over and that could be disastrous--the whole world is a low level threat at that point. Very prominent, like everyone can see how fragile and out of the ordinary I am and is staring at me. A little entitled because I am fragile and need extra care or at least caution so back off. Also, slower and more carefully moving because I don't want to make a mistake and fall or bruise myself. And the whole way I experience my body is different. You know how when you were a kid and you were at someplace where you had to be very restrained (church, a particular relative's house, a nursing home). Do you remember how different your body felt when you were there and when you finally got to leave? I always felt like my arms were too long and I moved too much, for example. It is that kind of a feeling except that I felt like I could break easily, like really if I put too much pressure on my arm even, it would crack. It's great to feel more robust.

Today was a really good day; I'm not sure what to wish or hope for for myself. Perhaps today I will use my wish to wish for good health for those who have taken care of me through leukemia travels. I am not sure what you might like for tonight. Perhaps good health for those who have taken care of you at various times in your life?

Tuesday, November 27, 2012

11/20/12 Annals

The 11/20/12 Annals is not one of their better issues, IMHO. There are a bunch of articles that aren't all that interesting to me and then there are two sets of recommendations, one for the diagnosis of stable ischemic heart disease and one for its management. They're kind of long and detailed, but include nice algorithm charts. The big surprise for me was all the emphasis they put on exercise EKG as the initial test for people of intermediate probability. I was taught that an exercise EKG is not very sensitive or specific and in my career, I may have ordered two. The editorialist talks about this being a big surprise for him as well (also there is what I can only assume is a typo in the editorial: he says "women" but the recommendations clearly say "patient"). Otherwise, the emphasis on medical management is, if anything, even stronger than it has been in recent recommendations which is nice to see for a general internist.

Additionally, there was an article about pharmacy dispensation of discontinued meds. When I stop a med in the office, the EMR does not inform the pharmacy that I want the patient to stop this med and sometimes the pharmacist can reasonably be expected to figure out to stop it (I send an rx for a higher dose of the same med or I send an rx for a different med of the same class), but sometimes there is no way they could possibly know and we all have to rely on the patient refusing the med when it gets filled for them. This is not a very robust system, clearly with patients of marginal literacy of all kinds as well as just generally overwhelmed or confused and on ten different meds. Anyway, these researchers were able to track down for about half the prescriptions they were interested in whether or not they were dispensed after a discontinuation order was put in the EMR and about 1.5% of the meds were dispensed an average of once over the next twelve months. Wow! It's both surprising that the number is so low (the pharmacists are doing such a good job of reading the doctors minds or calling for clarification) and surprising that the number is so high as these are potentially serious errors with dangerous meds (antiplatelet, antihypertensives, hypoglycemics). I try to include notes to the pharmacist about meds I'm discontinuing, but I don't do it reliably. Yikes! I just never thought about this as an Achilles heel of prescribing.

Day 164 - shame and end of life

As for my life and recovery, today was another day of small, but real gains. I returned to Planet Fitness and rode the bike for 20 minutes, but am completely unable to bring my heart rate above 115. This probably has something to do with being anemic. If I push harder to try to get my heart faster faster, my legs get so sore I cannot stand it. Oxygen is a good thing; soon they'll get more.

The dog had her annual physical today and got her shots. It's nice because the vet clearly likes her. The funny thing they do is put cheez whiz on the floor for her to lick up while they give her her shots so she doesn't even really notice. It's the only time she gets it so it's really a treat. Those of you with dogs will remember that kennel cough (pertussis) vaccine is given to dogs by dripping it in the nose (kind of like reverse snot). It took three techs to hold down the dog with all the moves. If only they could give cheez whiz while they did that, it would not be an issue.

Later, I went grocery shopping and saw a woman who was clearly in the midst of chemo (masked and hatted) and I considered going over and saying hi, but didn't. I heard the woman at the deli counter say something encouraging to her like, "You're going to make; I just know it!" so I wondered if she might not just be tired of all the cancer related attention. I can't decide if I would have liked a visit from some one like me or not when I started chemo. I do think it's very sweet when people come up to me and give me words of encouragement based on my bald status, but I also know that not everyone does appreciate that.

I've been reading a book about addiction and end of life issues and one of the issues I hadn't thought a whole lot about before was shame. I guess it's kind of obvious that shame plays a big part in families with addiction, but the authors of this book feel that the shame of addiction is echoed by the "shame of death" in families with addictions and a dying member. I am not sure that I see the shame of death in operation in my work and wondered if anyone else had thoughts about it. I have seen shame in doctors where patients have died that they felt shouldn't have (and, in fact, have felt it), but it's not something that I think of families with dying members having a whole lot of. What do you think?

In other pursuits, I finished Naomi Nye's book "Never in a Hurry" and really enjoyed it. I am currently lending it to Emily and next to Eva (don't think I've mentioned this to Eva yet), but it's really a delightful collection of essays about her experiences growing up in the U.S. and the West Bank as well as living in both places as an adult. When Eva is done with it, it will make a good pass around book.

For tonight, I would like to wish for wisdom for Dr. Hill tomorrow as I am seeing him for what will likely be my last treatment related visit or perhaps better considered my first remission related visit. I still don't have an appointment for a second opinion yet and am afraid that the super specialist will not find my case interesting enough to see. This puts me in a classic catch 22. I want to see him to find out if there are any things I can do to reduce my risk of recurrence, but he may only find me interesting enough to see after I have had a recurrence. For you, I will wish for wisdom in all your interactions tomorrow.

Monday, November 26, 2012

Day 163 - burden of care

Today's big recovery news is that I tried out Planet Fitness again. Last time I was there, I had to tell the bikes I was 70 to get a work out I could tolerate. This time, it was 75. On the other hand, I am still quite anemic. I hope to go back frequently and hopefully improve so that I can tell it my real age. The astonishing thing is the low quality of TV programs. There were three TVs I could see from where I was. One had a show focussed on finding the ideal wedding gown for women. OK, that's boring. "You can see the slip," "I'll alter it for you," Now, Sienna is coming back to see her altered wedding gown. Will it meet her expectations? Families arguing over whether or not a dress looks good. Geez, get a life. Another seemed to be a comedy show where there were two fake newscasters, a man and a woman. The woman kept saying things the man didn't like and he kept punching her. OK, not even remotely funny or even acceptable. The third one was a dramatization of a murder investigation and then a re-enactment of the murder once they got the guy to confess. Mmm, not really what I want to watch either. The commercials were out of sync so I mostly watched those although they weren't a whole lot better. Next time, I'm taking my ear buds and listening to something on my phone.

The other recovery news is that my labs were good enough that I can stop all my prophylactic meds. My daily pill count has just gone from six to one. This is excellent news. I can understand how people just get sick of taking all those pills. Sometimes I would just not feel like taking them and would find that I had procrastinated myself into the afternoon for my morning pills. It's funny how that works because really, how big a burden is it to open four bottles and down the pills? Every single day. Actually, twice a day for some pills. One of the biggest things I have learned from this leukemia experience is the burden we impose on patients. A lot of what we do really doesn't *seem* like a big burden and yet doing it every day got to feeling like a burden sometimes. Then it would stop feeling like a burden for a couple of weeks and then I'd usually get a break. Re-chemo, restart the meds, a week or so later it would feel like a burden again.

There is a story I have told a few times (maybe here, sorry if I'm repeating) about how once the nurse was doing vitals in the middle of the night on me and then she said, "as long as you're awake, let's do your eyedrops." My participation in "doing my eyedrops" is to lie on my back and open my eyes at the right moment so the drop flows in. It's really not hard, but I felt like crying. I really did not want to be messed with any more at that point; vitals were enough; let me go back to sleep. I didn't cry (the eyedrops would have had to be redone if I had) and I did submit to the eyedrops and soon after I was back asleep, having learned a lesson (hopefully).

The rest of today was spent weaving, reading at the coffee shop (hospice stuff) and chauffeuring an eleven year old around. A very nice day.

I also finished the most recent JAMA (11/21/12) which has a nice article in it about non-pharmacologic treatment of dementia behaviors--nothing earth shattering, but nice to be reminded of them. Worth skimming a/o reading if one takes care of patients with dementia (soon all of us except pediatricians will probably). There was a surprise: a randomized trial of daily sedation interruption was negative--did not decrease time to extubation. This was a surprise because previous trials have been positive. I remember the first trial well; it was a big deal and somehow was such an appealing intervention to me that I was happy it worked. Now, maybe we're losing our enthusiasm. There were also negative trials of citicoline and TBI and another on fish oil and post-op afib. For a while fish oil was this magical fabulous substance; now we're really accumulating negative trials of it in various indications. I think it still lowers triglycerides. The last original research article was interesting: the association between online patient access to clinicians and use of clinical services. It turns out that in the Kayser System in Colorado, people who had access to their medical records on-line used more medical services (including ED, office visits, telephone, etc). It wasn't the greatest trial because it looks like it was a convenience sample of people where those with access to their records were those who *chose* to turn that feature on--it's not clear from the accompanying text, but I think that is what they were saying. It is easy to imagine that those who *chose* to turn on their access to an EMR would be very different from those who chose not to.

For today, I wish for continued recovery for me. For you, I wish for recovery if you need it, and, really, who doesn't?

Sunday, November 25, 2012

Day 162 - this n that

Because it has been overused for reheating Thanksgiving leftovers, our microwave broke yesterday. I went to the mall (gag) and bought a new one after checking out the reviews on amazon. I wanted to see it before I bought it. That and three miles of dog walking pretty much used up my afternoon.

Other activities for the day were hanging out with Emily, reading this week's NEJM and a little weaving. This week's NEJM has a really interesting article on over-diagnosis in breast cancer. The idea is they looked at the population breast cancer data from SEER and noted that while early stage breast cancer diagnoses have gone way up since mammograms have become popular, late stage breast cancer diagnoses have only gone down a little bit. They do a bunch of fancy math that I can't follow and conclude that somewhere around 30% of early breast cancers are actually overdiagnosis of breast cancers that will never progress clinically. Wow! They make a pretty good case for mammogram as not a great screening test since detecting early cancers does not decrease the burden of advanced disease much. There was a nice op-ed piece in the NYT to go with this where the author pointed out how horrible a "quality measure" mammogram rate is. The idea is that if mammograms are not great screening tests, then the imperative to get them is not that strong and it is an individual patient/doctor decision so paying doctors or systems more for having a higher percentage of women with mammos would be rewarding systems for not being particularly patient centered.

The other news for today is that my labs from Friday came back. I am still quite anemic at 9.3, but my white count is 6.3 and my platelets are 330. What a relatively normal CBC that is! I can't wait to see how energetic and stamina-filled I feel at 12 or 13.

That is it for news from here for today. I'm hoping for more energy and more red cells tomorrow. (more, more, more!) For you, I hope for more of what you need most.

Saturday, November 24, 2012

Day 161 - what patients want

Today was notable for two open studio visits, lots of time with Emily, a plumber visit and getting to eat the leftover cheese from Terry's fancy spread.

Ellie's ceramics teacher, Kit Cornell, was having her open studio today so we went over pretty much as it opened and took a tour around. I bought a tiny Christmas present for Dan and am considering a return visit. She makes lovely things and it was fun to go with Ellie and have her point out what she liked and why. Next stop, Emily and I went to Terry's building's open studio. First we admired Terry's studio and then we toured the rest of the building. Terry gave me a large water color by Fran Mallon a couple of Christmases ago and she has made little tiny prints of it and has them in miniature frames. It was very funny to see the picture from my living room wall sitting on a table in her studio. We stopped by to see Lisa Noonis as well and had a nice conversation with her husband. They were tied with Terry for the best food in the building--they had artichoke hearts and nice olives with their cheese and plain crackers. Terry had several kinds of really delicious cheese and both plain and fancy crackers. We also were on a bit of a mission since Emily got her ears pierced to find nice earrings for her, but nothing was quite what she imagined.

My next act after lunch was to take Ellie to her friend's house and then to come home and wait for the plumber. I'm sure you won't be surprised to hear he came in the last half hour of his three hour window if you have ever waited for a plumber. Problem solved, however, and pretty quickly so we're happy. When I see a plumber I always think of our plumber in Berkeley, CA who had a PhD in something, but worked as a plumber because he made more money that way. He told us that all he really learned in plumbing school is that things flow downhill and not to eat the last inch of his sandwich. We didn't have to call him in too often in the five or six years we were homeowners there, but we saw him more than once and that must be his standard schtick because we heard it each time. I didn't mind; I thought it was funny the second time too.

Then Terry brought home what was left of his cheese tray and with smoked fish and Beach Pea bread, it made a great dinner.

Hey, remember my last hospitalization? The one with the fevers, not the really bad fevers, but the second one with fevers? I've been thinking about that discharge recently and the resident said to me, "Well, we're done and you could go home tonight or tomorrow; it's really your choice." Back when I was a hospitalist, I would sometimes realize that some one was ready for discharge a little sooner than I had anticipated. The first few times this happened, I would work hard to get them out earlier than I had planned, but after a few times I stopped and would just have them stay until the morning as initially planned. The reasons I made this policy decision for myself were that I thought I was more error prone if I changed the plan and I thought I looked scattered and disorganized if I changed the plan suddenly right before discharge.

Those are good reasons and I don't know for sure if people are more error prone when there is a sudden change in plans, but it feels like I am. Now that I have seen it from the other side, I can say honestly that the docs don't really look scattered or disorganized (at least not to me, but I may be more understanding than your average bear); things change and it's a complex world we are operating in, plans can be fluid. In my opinion, the main thing to look out for when moving a discharge forward unexpectedly is that the patient doesn't feel abandoned. People who know me well will know that this is one of my "issues"; I am inclined to feel abandoned when other people might not, but the sudden offer to be let out, combined with "it's your choice" made me feel like the resident didn't really care what happened to me. "Stay, go, it's all the same to me. When I come in here tomorrow morning to round, I don't really care who's in this bed."

It's interesting to listen to doctors talking about their philosophy of patient care. Recently, I was listening to an EPEC CD and the speaker said that he felt what patients wanted more than anything from their doctors was to know their doctors loved them. This is only kind of true for me. I want to feel that I am important to my doctor, but only for the doctors I really like; most of them need only offer competence and courtesy and I'll be satisfied. Some one else I heard recently (and cannot remember who it was) said that what patients want more than anything is "to know that their doctors will not abandon them no matter what." I thought: that person is right on--a man after my own heart. Our resident above failed in both of these. (I don't mean to be too critical of him; just using his lack as a spring board for thought. I know residents work very hard and are pulled in twenty directions at once.) The funny thing about all of these statements is that just like there is not one monolithic doctor who wants one thing above all others, there is not one monolithic patient who has a simple, single desire. Or if there were, it might be to be known and understood so that whatever idiosyncratic needs one had could be met.

For tonight, I would like to wish for less intensity on the abandonment issue for myself. For you, I will wish for you to be known and understood. I think it's nice for people who aren't patients too.

Friday, November 23, 2012

Day 160 - seconds, anyone?

So, we decided about a week ago that we would get a second opinion about my leukemia treatment so that we could be sure we had done everything we could to keep it from coming back. Dr Hill takes care of patients with AML, but his real interest is bone marrow transplant. I wanted to see someone whose main interest is AML who would know for sure if there was something else we should be doing as I near the end of treatment. I didn't want to mention it here until I had talked with Dr Hill about it which I did on Thanksgiving Day (perhaps some doctors work too much?). He knows a guy at Dana Farber that he thinks just fits the bill so he will be talking with this guy next week and I'll go see him hopefully soon. I suspect he will tell me that I am done and that Dr Hill has done everything just exactly right, but I do not want to feel in a year if something goes wrong that I wish I had gotten a second opinion sooner.

Today, I spent a few hours with Tanya, teaching her to weave which was very fun. She has a pretty old loom that is quite different from any I have used before, but we were able to muddle through and get her started--all warped up and the first half inch of cloth woven before I left. She was a quick study and when I left was happily sitting at her loom. She looked like she would not be budging for hours. It was really nice to teach some one how to do something that has given me so much enjoyment. It was also really astonishing to me to watch myself teach her and realize how much I've learned about weaving because as I mentioned before, I don't really have anyone to talk with about it.

Otherwise, I hung out with Emily and Ellie, ate leftovers and walked the dog about 2 miles. The dog walk is another opportunity for excitement because I was able to climb the hill by Town Hall without noticeable shortness of breath. I may not even be anemic soon; then, look out! I am sure that I was helped by last night's 12.5 hours of sleep. Don't forget about the open studios at Terry's studio building. They start tomorrow. Also, I forgot to mention that tomorrow and Sunday are Kit Cornell Days. So, after you go to Terry's studio, you can stop in Exeter and usually Kit has two pottery wheels where you can try your hand at throwing. If you've never tried it, you know you want to.

For me, I will wish for continued recovery and increased strength and stamina. For you, I hope you get to share something you love with some one nice.

Day 159 - Thanksgiving Day

Well, Thanksgiving Day at Tommie's so tired me out that I came home and went straight to bed at 7:00 or so without an update. It's Friday morning and after twelve hours of sleep, I feel much better.

I spent a lot of yesterday thinking of all the things I'm thankful for, but other people's lists are kind of boring so I will spare you although being alive and in remission are near the front of the list.

In other news, the NYT recipe came out really really well. Emily says it is like spanakopita without the phyllo.  I think it may become a regular at our house although Ellie complained very loudly about both the onion and garlic in round one of the recipe and the leeks and scallions in round two. Most recipes contain their smelly ingredients to one step.

This weekend, I get to teach Tanya to weave. I have been weaving for about twenty years, but once I learned (from a really nice Swedish woman in Berkeley), I have been on my own all these years. It will be fun to have someone to talk with about weaving. Other than that, the whole weekend is devoted to hanging out and Terry's open studio. If you don't have anything planned for Sat or Sun, come visit and walk off some of the turkey in downtown Portsmouth afterwards or go to Point Odiorne while you're in the neighborhood. It's always a very festive environment with live music, lots of nibbly food (Terry will have a nice cheese tray from Nancy's).

For today I wish for safe travels for all our Black Friday friends.

Wednesday, November 21, 2012

Day 158 - thanksgiving eve

The marrow would like to open today's post: "I'd like to point out that even though Mary took a big spill, she hardly got a bruise at all and that is because I am doing my job, unlike some other organ systems I could mention. I think it was the nervous system's responsibility to keep Mary from falling and it failed to a) see the curb b) raise the foot. And, no one has been trying to kill the nervous system off, unlike you've been doing to me. Maybe it's really the nervous system that needs the chemo. Just saying."

Other than healing from my fall which has not taken much of my energy at all, today was spent at Matt's getting a huge collection of potatoes, at home cooking said potatoes and also making the "Giant Beans with spinach, tomatoes and feta" recipe from the New York Times. Tommie can't eat tomatoes and Terry can't eat feta so although I made two versions of the recipe, I did not make the actual recipe ever. They both looked and smelled good; we'll see. They print a whole collection of vegetarian recipes for Thanksgiving, many of which look quite tasty. I also have plans for baked acorn squash and mushroom and onion pie, although not for tomorrow. My energy is slowly returning; I was able to cube and mash a huge pile of potatoes, mostly while standing so that's progress.

Emily came home this afternoon and we are so happy to see her. Maggie is 100% better; thank heavens without any further bodily fluid emissions. Terry is getting ready for his open studio this Saturday and Sunday. Now, you are up to date on our family's comings and goings and that's about all I have for today.

For tonight, we will all have the same wish. I would like to wish for the ability to see all that I am grateful for as well as to actually be grateful. I hope it is not too presumptuous to wish that for you as well, but I think it is a fitting and happy wish for tonight.

Tuesday, November 20, 2012

Day 157 - normal fall

The highlight of today was that I went to Portland with Tommie to see the Winslow Homer exhibit. On the way there, took quite a good tumble. I didn't see the curb in the parking structure. It was dark. I didn't hit my head, but I did fall, twist, hands, butt, shoulder. It was really nice to take stock: nothing really hurting much, brush myself off and go on. No required visits to the ER or calls to my doc or nothing. Just like a regular person. More signs of recovery. My platelets are in the normal range so yippee for me! We went to the exhibit. Tommie loved it; I liked it a lot, but am not as visually oriented so I don't think it did quite as much for me. The museum also has a stash of his pictures on the second floor in their permanent exhibit so we went up there too. It turns out he did etchings, oil and watercolors. I think both Tommie and I liked his watercolors best.

Big news! I realized today for the first time that my hair covers my scalp! Whadd'ya think?

In other news, Terry is getting ready for his open studio this weekend. Go shopping at the mall on Friday, but then on Saturday or Sunday, come to his open studio in Kittery. There are a lot of artists there; they rent the halls and landings to outside artists beside the people who are in the building and it always feels very festive. Either before or after, you can go to the Beach Pea for lunch and afterwards, you can either walk around Portsmouth or go to the outlet malls. Just let me plan your day for you!

I think that's about it for my news; a single trip to the art museum and I'm worn out. For tomorrow, I am hoping for the ability to focus on being thankful instead of being busy getting potatoes or whatever made. I have a lot to be thankful for this year, that's for sure. I think that is not a bad wish for you, too although I am also going to wish for safe travels for you.

Monday, November 19, 2012

Day 156 - slow recovery

The whole recovery enterprise is very interesting. If you had asked me seven months ago what I would accomplish if I didn't have to go to work for five months, I would have laid out wonders: a couple hours a day on the viola, maybe pick the banjo back up, a little bit of time for weaving, taking care of Ellie, exercise and probably I would have time to cook delicious complicated nightly meals and freeze half of what I cooked for when I have to go back to work, maybe some travel and lots of reading. Instead, a typical day like today consists of a little weaving, a lot of napping, some journal reading, a little grocery shopping so that I can hopefully do some cooking Tuesday or Wednesday, some Ellie care and a 1.9 mile walk.

I was trying to figure out what I *do* with all this time, so every time today I was not *doing* something, I tried to notice what I was doing. I realized that I often find myself staring into middle space, daydreaming about nothing in particular. I think I told you that one of the nurses gave me the definition of tired as "you have to really make yourself do things." This is about as good as I've heard. Even though if you asked me if I were tired, I would say "no," yet I find myself acting as though I'm tired. Is it my mind that is tired? Is it all over tiredness because I'm anemic and I can't recognize it somehow? Is my mind just having a hard time focussing? There is something to this recovery stuff; the reason they give you time off from work to do it is that it's like a full time job!

I am getting stronger. You can imagine how much I hated it when I climbed two flights of stairs and had to lie on the bed, panting for a few minutes to recover. Today, I climbed the stairs carrying a blanket and was able to spread it out when I got to the top without having to stop for a break. A lot of panting was heard, however. I also can walk 1.9 miles which is a nice distance. On the uphill part through downtown, I go so slowly that I am expecting some one to rush out from one of the stores with their walker and say, "Here, you need this more than me." On the flat and the downhill, I am getting closer to a normal pace. When I first left the hospital, I had to walk so slowly for everything. The cars would stop for me when I'd walk downtown and I literally could not hurry across the street to get out of their way faster. These signs of improvement are extremely welcome. I have a hard time with being less than 100% independent. This has been a tough five months for me.

Maggie is about 70% back to normal. She spent her whole day lying on the couch, but did get up to greet people as they came home so that is progress. The vet said to feed her two tablespoons of bland diet ("here's how to cook the rice and chicken"--actually, that's not happening. Her kibble is rice and chicken) every four hours (that's not happening. I'll feed her six times a day during the hours I am awake). It's a good thing I am more compliant with my own care than Maggie's. She said to do this for four days (also not happening--four days into 12 tablespoons of food a day, Maggie would be eating the furniture). Anyway, she's getting better with the semi-vet ordered diet so that's what we have.

Wanna hear what's good in this week's NEJM? (11/15/12) There is a nice article about the "Reciprocity of Recognition" by Rita Charon (the narrative medicine person) who talks about how a medical encounter "provides the ground for reciprocal recognition. Each comes to know things about the other that help the other, while being granted a view of self. Through the power of attentive medical practice, patients will see themselves in their doctor's gaze." I think this is absolutely right and very beautiful. That it is reciprocal is part of the real charm of medicine. Go read the whole thing.

There is a nice article about Lyme disease. If some one gets a second round of erythema migrans is it a relapse or a re-infection? The researchers sequenced the DNA of the B. burgdorferi in each of 22 cases and it was always a new strain, so it seems a second episode is much more likely to be a new infection than a relapse. Another hit to the folks who prescribe ceftriaxone for three years at a time.

There is a great CPC which illustrates why general internal medicine is the coolest. It really demonstrates that general internal medicine is a real branch of internal medicine with special skills. I really enjoyed it.

For tomorrow, I am hoping for continued recovery for myself. For you, I will hope for any recovery you would like to progress in your life.

Sunday, November 18, 2012

Day 155 - some one else at the doctor

This morning after cleaning up the dog barf on the living room carpet, Terry and I went to Salmon Falls Studios in Rollinsford for their open studios. We both found a couple of things we liked and I was such a dunderhead that I forgot to get cards and can't show you. For me there was a water colorist who painted whimsical without being obnoxiously whimsical bright big pictures and a guy who did sculpture and photography. Terry liked them and was travelling faster so saw a few others he liked as well. We travel separately because while I like to at least look from the doorway, Terry slows down at the doorway and senses the vibes in the room or maybe uses his sixth sense to decide if it's a room he wants to go in and moves on if he doesn't like it. He cannot stand being in studios with work he doesn't like. It's best for us to view things separately. We went early on Sunday which was less crowded, but maybe not all of the open studios were open. There were definitely fewer than previous years and some of our favorites were missing.

Then we came home, fed the dog and I took a nap. What's your favorite sound to wake to? If you said the sound of the dog barfing on the carpet, you would have enjoyed this afternoon at my house. There were two more episodes before I started calling people for advice. Of course, my worst worry, since Maggie eats a lot of whatever she finds in the woods with her friends was that she had eaten something; it was stuck and she would require surgery to move it out. How long can a dog lie around with an obstruction before it's an emergency? It was Sunday afternoon. Could she wait til Monday when the regular (and regular priced vet) comes back on duty? If I waited for the regular vet on Monday, was I risking a visit to the emergency vet in the middle of the night instead? Her vet was closed with the phone advice of "go to the emergency vet." I started calling around to my friends: one didn't know; one was at a conference and not answering her phone; yet another didn't answer; Terry, overwhelmed by medical emergencies (and he agreed to get Maggie only if she was not his dog in any way shape or form unless he wanted and he has been so gracious about taking care of her while I've been sick) deferred. Finally, I called Kate who knew (why it didn't occur to me to call the woman with four golden retrievers sooner I don't know). She said that in the morning, she could be too dried out and we should go now if only to get fluids (she said it much more direly than that--certainly got my attention). We went.

The emergency vet was very kind and surprisingly quick. However there was some waiting and while it was going on, all of a sudden, Maggie's belly started with the loudest borborygmi I have ever heard (for my non-medical friends, that's the fancy word for the noises your stomach makes when it "growls"). The vet said her xray looked non-obstructed (hooray) and that there was a lot of stool in there and even more gas lined up behind it. She said there was probably impressive diarrhea on the way. The vet gave her half a liter of fluid under her skin in the back of her neck, some pepcid and a doggie anti-emetic that works by blocking substance P in the doggie nausea center (whoa!). We went home with a bottle of flagyl because the vet's best guess is that Maggie got into something (that's mah girl) and now has a bacterial intestinal infection of some sort. The way I put it all together is obstrution that spontaneously moved. I am really, really hoping it moved all the way down. Yick.

Since she's been home, she's been sleeping very very soundly. It's funny because normally, I'd be very happy to see the dog asleep so deeply, but I'm so worried about her, that I keep waking her up to check on her. The vet said she is probably finally able to sleep now that the anti-emetic has taken effect and she has some relief so try not to worry. OK, good luck to me with that.

Don't you think that's enough for one day? I do and have no further exploits to tell you about. 

Well, for once, tonight's wish for me has nothing to do with my body. I am going to wish that Maggie gets well without massive diarrhea, especially diarrhea during my sleeping hours. For you, I'm not sure. My first thought is to wish that your pets all have more sense than my little idiot, but that's not a very good (or kind to Maggie) wish. Perhaps I'll wish good health for all your pets. If you don't have a pet, perhaps you know one to pass the wish on to?

Saturday, November 17, 2012

Day 154 - a funny story and good night

Today was spent walking (about twice as far as yesterday), napping, NEJM'ing, internetting and thinking about weaving. I had lunch with Terry and Stefan and dinner with Terry at the Blue Moon. So, it was overall a very nice day.

I forgot to tell you this story when it happened so it's belated, but it's a slow news day here. When I was at the NHHPCO conference, the person ahead of me in line was a older man with very short white hair and a bald pate. He turned to me and said "I see my haircut is coming back into style." Without really thinking about it, I replied, "Yeah, but mine cost $170,000 and came with a 20 pound weight loss." He was silent for a few minutes, then turned around, looked me right in the eyes and said, "but you're ok now, right?" I assured him I was and we had a nice conversation about hospices. It turns out he is a volunteer for a hospice in Laconia. I can never remember where Laconia is, far away, up north, near Franconia and Berlin, right? When I look at a map, I see that my sense of northern NH is like saying "I'm from the SeaCoast, you know, near Exeter and Portland." Maybe I need to do a little local travelling so I'm not such a doofus.

I wanted to buy cider from my favorite orchard, Apple Annie's, but no apples this year. Remember it for next year, though, because one of the fun things to do in the fall is go there and they don't mind if you bring a picnic and stay a long time. The old dog, Cider, used to beg. I don't know if the new dog does or not.

That is positively it for news from here. I am hoping for another good night's sleep, but for variety, I'll hope for a more energetic tomorrow because lack of energy has been my main concern. For you, I'll hope for a fun filled tomorrow.

Friday, November 16, 2012

Day 153 - nothing exciting here

Today was spent napping, walking, eating salmon fresh from cape cod, catching up on journals and doing a little grocery shopping.

I am trying simultaneously to rebuild the muscle I lost during my fever admissions and to recover from my two days of NHHPCO. It is a good thing I have a comfortable couch is all I have to say. Tommie loaned me some little powder puff weights and I fling them around for three reps and then it's time to give that poor muscle a break. I actually took tylenol for sore muscles rather than fever for the first time in ages.

So, you might wonder what my overall picture looks like. It's clear as mud is the problem. I'll tell you what I understand. I might actually be done with treatments. It's not clear if there is one more thing Dr. Hill may offer me or if I'm really done. When he was at a conference recently, he asked everyone with lots of experience whose opinion he really respected what they would do with a patient like me. They all felt it was a tough problem, but that they would do exactly the treatment I have had and then stop. They said they'd check the marrow registry to make sure there were some options in case the patient needed a transplant down the road. I'm not sure what they would do for a patient without marrow matches (hopefully I'll have some), but for some one with options, they'd stop.

There is one study out there with results we don't know. It is essentially comparing people who have had my treatment (3 chemos) with people who have had two chemos plus an auto transplant. If the auto transplant people have a big decrease in their rate of recurrence, it would probably be worth thinking about doing one for me even though they got two chemos plus auto and I would be getting three chemos plus auto. We are meeting with Dr Hill on Nov 28 to sort it out and make our definitive decision. Either way, I have to do the same thing now, try to rebuild muscle and grow red blood cells. It would certainly be exciting to be done, but on the other hand, I don't want to leave anything that could decrease my chance of recurrence undone. 

So, as we head into Thanksgiving week, I have plenty to be thankful for and lots of hopes for the future. My needs have become so simple mostly; I am hoping for a good night's sleep for tonight yet again. You, I bet, are getting tired of that wish because you are way more interesting than me. What might you like most? a good cup of coffee? a nice conversation? an exciting weekend? Tonight, I am going to ask you to wish for yourself. Wish wisely, because you only get one per night.

Thursday, November 15, 2012

Day 152 - more talks and exhaustion!

Rob Spencer was able to scrape up an extra ticket for me and I did get to go to the NHHPCO conference afterall! I enjoyed it, learned a lot and mostly just felt so happy to know my professional life is out there waiting for me whenever all this is done. I got to hear Ira Byock speak (always a treat), Joan Berzoff (who I had never heard of, but whose talk was wonderful) and finally Alvin "Woody" Moss, the guy who came up with POLST. Their talks were all good and I felt much smarter coming out.

Then I went to hear Rob's talk on pain (partly because I had been a beta tester and wanted to see the finished product and partly because I just wanted to hear it). All of the people with me were non-prescribers so it was not quite focussed for me, but I still managed to learn things. Rob has this really neat idea of viewing pain scales as a two dimensional construct with a sensory and an emotional component. We can all think of patients who have a lot of sensory pain, but not much emotional component to it: they would be far out on the x axis and not very high up on the y.  Conversely we can think of patients whose pain has a lot of emotional content, but not as much sensory. They would cluster closer to the y axis and higher up. He talked about the patient who tells you their pain in 12 out of 10 and how this almost for certain means there is an emotional component to their pain (which I have heard many times before, but doesn't hurt to be reminded).

I ate lunch and left at that point, exhausted. Fun, but I'm not ready for prime time yet.

There was nothing else to my day: napping, fetching Ellie from school so she could avoid the late school bus, dinner, bed as soon as I can get Ellie off to bed. When she was smaller, from time to time when I was beat, I could tell her it was bed time and scoop her up and hour early, but no hope for that now.

All I'm hoping for for tonight is a good night's sleep. If you'd like something more exciting than that for yourself, you're on your own. Otherwise, I'll wish that for you, too.

Wednesday, November 14, 2012

Day 151 - a dinner talk

I am sorry for any confusion about the time of Patrick's talk yesterday. It was 7 and, Tommie says, went very well.

As for me, I got back at about 9 o'clock, greeted Ellie and Maggie and went to bed. Today I napped and finished the other side of Ellie's blanket. Tommie and I had lunch at the Green Bean. I drove to the drugstore to get my meds and to the grocery store to get yogurt.

Today's big excitement, however, is that I am going to go to the NHHPCO dinner talk tonight. Sadly, there are no more tickets to the event tomorrow because then people would have to sit on the floor and the fire marshall would not like that (probably the people on the floor wouldn't either). I didn't really know until today if I was going to be up for it, but in retrospect I should have just bought the tickets and let them resell mine if I couldn't go. Ah, well. Life lesson #48k.

I hope I can continue to learn from my experiences and keep getting smarter. I think I'll hope that for you, too.

Tuesday, November 13, 2012

Day 150 - she's outta here!

At 5:15 pm, my resident came in and said I could stay or go, it was up to me. I called Terry and he said he would come and get me so go it is. I'll see you in Exeter tomorrow and maybe at NHHPCO on Thursday.

Otherwise today was a very quiet day. I went for a short walk, had lots of nice visitors including Briane who gave me a leg massage which was just the ticket, given how sore they were from yesterday's exercise.

The marrow would like you to know the ANC was 980 today, platelets were 33 and the red cells were 7.5. "Satisfied, now? I hope so. Geez." I'm actually hoping for a little more recovery in the red cells making department, but I don't think this is the time to mention it.

For me, tonight I'm hoping for safe travels. For you, safe travels if you are travelling and if not I'll hope for interesting stay-at-home-ness.

Monday, November 12, 2012

Day 149 - the reading, the echo, the marrow

First, the marrow's news. "I have fully woken up and have produced 380 neutrophils per whatever unit they measure in the lab. This is a jump of 280 and more than trebling of my last production. I am also producing platelets for 27 and red cells for a total of 8.3. I hope you are satisfied."

I had an echo today because of the potential GPCs and my mitral regurge and it was fine.

The final news is that I did my reading this evening. I felt somewhat silly because I had to take my IV pole, but also feel it gave me more credibility as a sick person. People laughed at the right times and seemed to like it. The only problem was that my computer failed on the third page and that was sort of a huge disruption. Lesson learned: always use paper. So, I'm 48 and learning these things that everyone else knows. I guess it's better than learning them at 58. I really liked a lot of the other people's work. It was all very different. Two other people did "creative non-fiction": one a memoir of growing up on a farm  maybe 60-70 years ago (he talks about haying with horses) and one a very well done take on the "be sure to take time to smell the roses" thought. You can see from that how varied the program was.

The first half took twice as long as I expected it to so I decided to leave and go back to my room because it was 1.5 hours later and I had estimated 45 minutes. I knew Dr Hill was rounding and didn't want to miss him, like if he finished and went home to well earned rest. I also didn't want the evening nurse to worry about me. And maybe I was getting a little tired. I know now I am really looking forward to bed. I am sorry I couldn't stay for the whole thing. Next year, I'll be stronger and have normally functioning bone marrow (knock on wood) so will have better endurance.

Don't forget tomorrow if you are in Exeter or can get there easily to go to Patrick's reading at Water Street Books. Here is a recipe for a cheap, fun date. Go to Exeter, arriving at 6. Have dinner at the Green Bean or Loaf and Ladle (either place will put you back about $20 for 2), then walk two very pedestrian friendly blocks down the street to Water Street Books and hear Patrick read. For desert, continue down the street another block or two to the end to Stillwell's ice cream, get a cone, then promenade down the Swazey Parkway while eating it, admiring the lights and quiet and maybe even smooching once or twice if you're with your sweetie. A great evening for under $30 unless you buy a copy of the book (who wouldn't?) then under $40.

Tomorrow I am hoping the marrow will have more news that involves the number 500 for me. For you, I hope a creative endeavor you are really proud of that you get to share, not necessarily tomorrow, but sometime.

Sunday, November 11, 2012

Day 148 - the marrow returns

Great day today. ANC of 100! triple digits for the first time in like 10 days. It feels so good. I left my room for the first time this admission and walked around the station several times. It went well. Then, with my friend Eva (please note I would not do this alone at this point), I went to the fifth floor and did a lap of my usual long walk successfully. I didn't want to do more because I felt a little tired. I probably could have pushed more, but really why would I at this point?

Other news: I was unmaking my bed this morning so the aides could make it and I needed to rest afterward and breathe hard so they gave me a unit of blood even though at 7.1 I was not officially ready for a transfusion. Phew! that also contributed to giving me a nice day. My platelets are 13 which might mean that my platelet machinery is waking up, more excitement. I am not sure, but I think my last big fevers were close to 24 hours away and I only had one little fever today. This afebrile day brought to you by your local neutrophil.

I had two visitors: Rob in the morning, Eva in the afternoon, separated by a two hour nap, lunch and some misc goofing around on the computer. I had fun with both of them. Rob brought his really cool version of a tic tac toe game that he invented--that he got a celebrity endorsement from Will Shortz "best tic tac toe like game I've seen" or something similar. Cool, huh? Eva brought Sanpellegrino water which is so nice to mix with regular water when you are getting really sick of regular water, but nothing else really sounds good.

I am hoping tonight for nothing more than a good night's afebrile sleep. That seems a modest wish for you, but for the day before the workweek (unless you get Vet's day off), it's not a bad wish so I hope you all have good afebrile night's sleeps (except for those of you working over night, but especially those of you on call overnight).

Saturday, November 10, 2012

Day 147 - the marrow wakes up!

So today I woke up to a note from my night nurse than my ANC was 20. This is incredibly good news. Even better, the fellow wanted to recheck my platelets (8) because I think he didn't want to transfuse me and in the afternoon, he was happy because they were 11 and I was happy because my ANC was 40! I don't think it's unreasonable to hope for 80 or maybe even triple digits tomorrow. This is what I really need to make the stupid fevers go away so grow, grow, grow little marrow garden!

As for the fevers, 102.6 seems to have been my max today, a little lower than 103. I let one escape in the early afternoon to see how high it would go and most annoyingly, it will not come down, hours later, I am still 102. Arg! I don't really feel bad; in fact, I keep feeling like it's coming down, I get super hot, and it just doesn't do much.

In other news, Terry came to visit me in the morning and Ana and Shelley came to visit me in the afternoon. Nice chit-chats were had.

The worst part of today was that for my platelet recheck, my port seemed very sluggish. No on felt it was the port, because it has always worked wonderfully (thank you, Dr Mahon!) and since it had been accessed in the ED with a type of needle that they stopped using here because it fails so frequently, everyone felt it was the needle. My afternoon nurse tried to draw blood cultures--it would not allow a single red blood cell to leave after the first tube which took about five minutes. So, IV nurse, reaccess. She accessed both sides and it works (surprise!) perfectly. I suggested to the nurses that they have their supervisor write or call CMC (and all the other hospitals that send them very many patients) because there is no way the ED would know that that particular needle was prone to failure because it doesn't fail in the first 8 or 10 hours, it takes a few days. Hopefully, no one spends a few days in the ED!

The other news is that a few days ago, when I had one of my nearly infinite set of blood cultures, one of two bottle came back positive for coag negative GPCs. The doctors in the audience know this is probably a contaminant, but because I was still having fevers, they decided, wisely, I think, to cover me for it. Of course, it didn't come back initially as coag negative, so they wanted to cover MRSA. uh-oh. I bet you remember what happens with vanco. I was actually a very good sport and said I would try it if they wanted, but they decided they did not want and put me on daptomycin. I know absolutely nothing about daptomycin except that it is given once / day and does not seem to cause any side effects in addition to the zosyn I'm already on. I like both of those features. Terry says not only do I have princess blood, but I require princess antibiotics now. As soon as the other bottle comes back final with no growth, they'll stop it.

I wish I understood why I am still having fevers on zosyn and daptomycin. It seems like I should be pretty well sterilized--OK, I just wikipedia'd it. It is active against some GP's, in particular MRSA (which I find it hard to think I have--given that one culture is coag negative and one is growing nothing--for me to have MRSA, two mistakes would have had to be made in the lab or two "one of those things" events would have had to happen simultaneously). Ooo, more googling and the Merck Manual says that not all enterobacter are susceptable to zosyn or ceftaz. Geez! It's a riot sometimes to be a doctor with a big diagnosis. I really don't want my doctors to think I'm second guessing them (or to be embarrassed), but I really want these dumb fevers to go away. I'll have to stew on this tonight.

Well, I am hoping for three things overnight, wisdom, white cells and afebrileness. Do you think it's too greedy? I hope not. For you, I will wish for the trio that I think makes a good doctor "wise, kind and smart." For those of you who are not doctors, I think they are still a great trio and actually hope we all find ourselves with these qualities.

Friday, November 9, 2012

Day 146 - slowly better/updated

Today I spent three separate sessions of 2 or 3 hours out of bed, whereas yesterday I think I only got one hour in. I had big fevers last night (103), but my highest today was 100.5. So, I'm for sure getting better! Also, they added a new antibiotic to my regimen. Unfortunately, I planned badly and am exhausted and this is the whole blog post I have in me at this point. I hope we all have a good feverless night!

OK, it's Saturday afternoon and I will do the blog post I would have done yesterday if I hadn't run out of steam (unless I run out of steam again). I ended up with more fevers last night (103) so I guess I was prematurely happy. This time I'm not getting rigors and I think at least some of it is because I have learned how not to have rigors. Right from the beginning, I have been able to turn off one limb at a time, but now I seem to be able to keep everything from shaking, but not from tensing. So I have to cycle around R leg, L leg, L arm, R arm, back, neck, shoulders, chest, stomach, R leg, L leg, etc. each time consciously relaxing the muscles in the area. By the time I come back, they are tensed again and we just keep cycling. It's very relaxing and actually kind of fun to see how sneaky my body can be when I'm paying attention to another part. Eventually, I get up to the temperature my brain was aiming for and we're done or more commonly, I fall asleep and don't know what happens then.

I should mention that the whole fever cycle starts with migratory goosebumps which would be kind of fun if I didn't know what was coming. They will sweep up one or both arms and then my back and then maybe one leg, my neck, my head, then maybe an arm, a leg, totally random. Usually I ask for tylenol at this point, because I recognize what is coming, but not always because if I constantly take tylenol, no one will know how high my fevers are. Then we do the non-rigor thing, then I am feverish (and almost always asleep). Even during the day, if I'm not taking tylenol, once I have the moving goosebumps, I get into bed. Then when I wake up, I'm incredibly hot, and I stick my feet out of the covers, then body part by body part lower the covers, then I start sweating furiously. I usually fall asleep again here, then wake up in a wet johnny and wet bed at some point in the future. Sometimes I sleep well enough that it's all evaporated by the time I wake up, sometimes not. It feels good to wash my face in the morning! I usually do about two fevers per day and tylenol the rest away, but without tylenol, I think I would be peaking about every 3-4 hours still. Kind of tiresome, but when I came in, I was having big fevers through the tylenol so this is for sure progress.

The thing that's not going so well is my GI system. The antibiotics are doing their typical havoc wreaking on my guts and it makes me really resistant to eating. Eating has not been my strong suit since my diagnosis so this is really not helpful. I am currently in isolation for "rule out c diff" which I  (and everyone else) really think I do not have, but my co-unit residents are so fragile that there is no way they can not put me in isolation. What are the symptoms of c diff? exactly what I have. I think the results will come back Sunday afternoon.

That's what I think I had to tell you for Friday.

Thursday, November 8, 2012

Day 145 - up, down, up, down

Today was not my favorite day. I had a lot of fevers, some very mild rigors and was generally exhausted. I did get a unit of blood which made my headache go away and made me feel a little bit more energetic. Then, the best news of all, at the end of the day, they switched my antibiotic (to zosyn) so hopefully this will work better. What I really need are neutrophils and currently, I have zero still. I think my marrow has been pretty beat up by the chemo.

If you are coming to the reading on Monday in Lebanon, it is at 6. I should warn you that if I get discharged on Sunday, I may not feel like making the trek back up here. Check the blog to make sure I'm reading before you make the trek if you are coming just to hear me read. I think discharge on Sunday is a very unlikely scenario; going from 0 to 500 in three days would be the work of healthy marrow, not marrow that has three doses of HIDAC behind it, but we'll see.

I still feel completely without energy, charm or wit, but at least I have been out of bed to the chair twice today. This is a big improvement over yesterday where it was zero.

Here is a really nice picture of Ellie snuggled under the blanket I made:
She looks pretty comfy!

Ellie is cutting the blanket off the loom.
I am so hopeful that the new antibiotic will work better and get rid of my fevers. For you, I hope for the ability and will to change courses when needed.

Wednesday, November 7, 2012

Day 144 - drat

Well, the fever did return, right at 8 pm, I hit 100.6 and went to CMC's ED. They did the workup, gave me ceftaz and sent me in an ambulance up to Lebanon. Up here, I have been doing well, with excursions to 103 (as always, I believe if you are going to do something, you should do it well). My hemoglobin was back down in the low 6's--I am not sure where I am losing it, but am getting a transfusion now. I got a fever during the first transfusion so we had to stop after only about 80 cc's. I have spent most of the day asleep, but have been able to have coherent conversations and had several of my usual Lebanon visitors and have been with it enough to enjoy talking with them. This neutropenic fever admission is so much nicer than the last one! I am nowhere near as sick and am very grateful.

Just like the last admission, however, I did get positive blood cultures within twelve hours. Last time it was gram positive. This time it's gram negative rods which come from the GI tract typically--not sure exactly where they came from, but the ceftaz is quite successful at encouraging them to go away.

That's about it for today's post. I wanted you to know I'm back in Lebanon, but much better than last time. I suspect I'll be here through the weekend, although a gal can hope.

I am hoping for a quick end to my fevers and a return to my nice home life for me. For you, I hope your obstacles stand aside and you can get done what you need to.

Tuesday, November 6, 2012

Day 143 - the fever returns?

I have felt febrile on and off all day today and when I checked, my temperature was never above 100.3. I called Dr. Hill's nurse and she was really clear that I need not go in for anything less than 100.5 so I keep checking and hoping it goes down. I don't feel too bad, overall and this morning I felt great. I feel like I have a virus coming on which would not be surprising given that Ellie is in sixth grade at a school with (I think) a couple thousand kids at it. She seems well, however.

Otherwise, today's big activity was finishing the blanket (I am hoping Ellie will cut it off the loom for me this evening and I can post a picture), driving to Newburyport with Tommie to check out the T commuter rail station, laundry by the ton (mostly mine), and misc paperwork. I signed up for my benefits (Dartmouth employees, you only have until Friday to do it) and filled out my long term disability which will take effect in mid-Dec for (hopefully) just a short while as I get ramped back up to full time.

Other exciting news, if you are in Lebanon on Monday, Nov 12, come to a poetry reading sponsored by the palliative care department. I will be reading a version (very helpfully editted by Patrick) of Agnes Day. And, if you are or can get to Exeter on Tuesday, Nov 13, come to Water Street Books and hear Patrick read from "Dying for Beginners" and maybe other stuff. It is not every day one can hear a nationally known poet (impressed? I am.) reading his own work in an intimate setting, all without travelling super far. Here is a link to the Water Street Books' website where you can get directions and read about it.

I am sorry that today's post is really not even remotely interesting, but worrying that I am headed back to Lebanon with fevers puts a damper on my ability to think well. This is not a bad lesson for today: one would think that a fever of 99.8 is nothing and that I could just set it aside as I have had fevers of 99.8 many many times without needing to go to the hospital. However, my last fever episode was so unpleasant that it makes it extremely difficult for me to take my attention away from it and put it on something more pleasant or interesting. I am not even thinking specific thoughts like "I hope I don't get as sore this time from rigoring as I did last time" or "what if Dr Hill decides I can't have any more chemo because I had fevers with two of three cycles?" It is really just a big amorphous bundle of "O, please, let's not do this again" hanging over my head. Just the thing deep breathing exercises were made for, right?

I will try to update and let you know if the fever declares itself or just sits around at sub 100.5 so you know which direction to broadcast your good thoughts and wishes for me. (Last check was 100.4 so it's not looking good.) It does not come as a surprise that my wish for myself is that I stay without fever. If I could have a second wish, or maybe a co-wish, it would be that my fellow countryfolk choose with wisdom and compassion today. For you, if it is healthy for you, I will wish that you are able to avoid unpleasant things you wish to avoid. If it is not healthy for you, I will wish you the strength to deal with them.

Monday, November 5, 2012

Day 142 - who needs platelets anyhow?

This morning, I woke with a headache which I almost never do and it didn't go away. It wasn't terrible so I just ignored it, figuring it was part of the whole AML experience or maybe that I needed a cup of coffee. I did a quick neuro exam in the mirror and everything was symmetrical, my vision was fine, my neck was supple so I figured it was unlikely to be anything too bad and did the sudoku, drank coffee, etc. At 8:30, Tommie came over to take me for labs and on the way home, I just felt terrible: nauseous, weak, headache was worse, exhausted. Tommie suggested I call Dr Hill's office and their secretary took a message and told me, Elise, Dr. Hill's crackerjack nurse would call me back. As an aside, their secretaries are well trained. The first words out of her mouth after I told her I was not feeling well were "do you have a fever?" I was impressed.

I went home and lay on the couch while Tommie got me a blanket. You can tell I'm sick if I'm willing to let someone wait on me like that! I slept for about an hour and Elise called to check on me and tell me my labs: hgb 6.2, plts 0, ANC 0. I was impressed. I think she was too. She told me that she thought I shouldn't wait until tomorrow for a transfusion and could I please come in now. We discussed where to go: CMC ED (where it would be easy to get a head CT if needed, but I'd be exposed to lots o germs), Norris Cotton (fewer germs, but harder to get access to what might be needed for working me up). We started driving and figured she'd call us and tell us which way to go before we got there. About five minutes shy of Manchester, she called and said that they just happened to have a unit of platelets that would be a match for me in Lebanon and did I mind driving up there instead? We did not and headed up. Previously when we have needed platelets, it has taken over eight hours to match them and get them to me so this was a very nice surprise. Then, Elise mentioned that the Red Cross called my donor today to ask them to come and donate more just to be safe. I just cannot get over that there is a person out there somewhere who is "my donor." I am so grateful to them.

Drive, drive, drive, got there safely, into the clinic, access the port. The port accessing nurses were quite impressed with my labs too. They repeated them in Lebanon and by their counters I had 2 platelets, 1 neutrophil and my hgb was 6.7--all within the difference you would expect between machines and four hours and all showing that I am at my nadir. They had the nurse practitioner see me because of the headache and she agreed that it was likely just my brain saying "please, I'd like a little oxygen." I got one unit of platelets which raised my count to 40 and 1 unit of red cells which made my head ache go away and made me feel so much more energetic. Hooray for blood products!

Then there was the drive home; Tommie had come over to hang out with Ellie so homework, dinner, etc. were done and it was off to bed for the littlest of the family and now off to bed for the anemic-est of the family.

I've been feeling anemic since Thursday or so and really except for the ride home from Manch and the headache, didn't feel worse than I have since then. In the hospital, when I dropped below 7, my knees were tired and sore in a very particular way, but not this time. It is odd how I cannot always track my labs by my symptoms. Terry thinks there is pretty consistently a couple days' lag between when I say "I think I'm anemic" and when my labs show it. At any rate, the nurse practitioner was impressed enough by  how far I dropped since Thursday that she is having me get labs on Wed. The good news is tomorrow at least will not have any medical appointments in it.

My wish for myself is that I will feel well enough tomorrow to enjoy my new red cells. In all likelihood, that is not a wish that works for you so, for you, I wish you are able to enjoy something simple and wonderful tomorrow.

Sunday, November 4, 2012

Day 141 - Emily leaves

Last night, Emily was stopped for the first time by a policeman. Her front headlight was out and he just wanted her to know. He didn't give her a ticket or even a warning, just suggested she fix it. That means this morning Terry and I learned how to replace the headlight light bulbs in her car. That was a nice morning project which culminated in working headlights. I drove us to the car parts place and Terry feels like I'm safe to drive again so yippee!

Sadly, the next project was seeing Emily off, followed by a visit to Target. We went to get Ellie converses but she didn't like the style they had (at least we know her size now) and we somehow left with a pair of semi-combat boots and pink ear buds. The boots look great with her jeans and she's planning to wear them tomorrow.

I did some weaving and then thought I needed to make a big pot of macaroni and cheese. It turns out that making roux, especially the step where you mix the milk into the flour/butter mixture is actually a fairly aerobic activity and I had to alternate arms. The things anemia teaches you. It came out pretty good but Ellie prefers Heidi's.

I have gotten back to reading a bit and am enjoying a book of essays by Naomi Shihab Nye. Today I read a very funny essay about her interactions with the medical profession and how she saw a non-traditional healer at one point. She finishes the section by saying "I always think people with closed minds must never have had any ineffable experiences in their lives. Otherwise how could they be that way?" I thought that was pretty nice.

In leukemia news, I have petechia now, but only on the backs of my hands, more on the left than right. I seem to have more than yesterday. I still have none on my ankles or anywhere else. I continue to be without explanation for them.

Tomorrow will be labs and, if needed, transfusion on Tuesday. I'll let you know. I'm hoping to continue feeling a little better every day for me. For you, I will wish good health and feeling good, too.

Saturday, November 3, 2012

Day 140 - jail threats

We have gotten to the time in the consolidation cycle when my blog reads somewhat like a nine year old's journal: "Dear Diary, played with the loom a while, then mom let us have pizza. Next it was bath night." Actually, we had chinese at Tommie's for dinner, but the rest is about right.

This morning, Terry and I went out for breakfast to a place we often go. The woman who helped us was chatting with me, asked me how I was doing, etc. I told her that I had about two and a half weeks until I had to go to jail. She, very sympathetically said, "O, dear, you have to deal with that too?" Chemojail. Mental note to not shorten it again.

The rest of the day was spent hanging out with Emily and her roommate, weaving and napping. We really did have chinese at Tommie's. (I tired to put a link to the restaurant in, but keep getting sent to "you may be a winner" popups--it was Penang and Tokyo.) It really was delicious as always.

As for leukemia news, I have developed a few petechiae which I don't normally do. I have one on my philtrum and multiple on my hands. I never get them in normal locations like my ankles; I don't know why. I have had platelets of 2 and no petechiae so it is impossible to guess what this might signify, if anything.

The other news is that the next treatment--whatever it is--will be my last. I realized today that this might be my last consolidation (might not, too). I sort of feel like I should have a ritual for it or somehow mark its end, but am not sure what it might be. I am still waiting to hear if my last treatment will be another consolidation or an auto stem cell transplant and will let you know when I know.

My wish for a nice family day for today certainly was granted and for tomorrow I'll wish for safe driving for Emily. For you, as well, travelling safety if appropriate and, if not, staying home safety.

Friday, November 2, 2012

Day 139 - surprise french toast

It could be said that today technically started last night at Ellie's bedtime when she mentioned, "O, by the way, you have to bring french toast to school tomorrow morning for the parent breakfast." Fortunately, we had everything we needed to make french toast for ten already in the kitchen, but that provided a different start to Friday than we were imagining.

I am not sure why there was a potluck, but there was, just for the kids in Ellie's "pod" (they actually don't call them pods; they call them teams, but everyone seems to understand what a pod might be). We went there, dropped off the food, stood around for a few minutes, then went to the auditorium where essentially we were united with Ellie, then we all walked back to the pod. Mostly we stood in line, waiting our turn. When it was my turn, I realized with an ANC of likely under 100 by now, I could not have any hot, now warm, dish that had been cooked who exactly knows how in some one else's kitchen, that I had to stick to the pre-made bakery goods. They were all sweet; there were two types of chocolate muffins. I felt quite sorry for myself, looking at the beautiful, slightly crisped cheese top of a breakfast casserole that I could not have. Then, at the end, I had to restrain myself from the apple cider as it's not pasteurized. The self pity was quite an astonishing thing to see. I also felt tired and it is surprising how much energy standing uses up. I was constantly searching around for a place to sit. Out of order, but related to this, we had a loaf of bread with a hard, but not stale at all crust, that I used for the french toast. I cut the bread with a bread knife into eleven slices and that made me feel noticeably tired. I didn't need to sit down, but had to pause a moment before I was able to do anything else. This fatigue is even worse than pregnancy fatigue *and* there's no cute baby at the end.

Next, it was time to rest, followed by a visit from Diane. I had my heart set on Green Bean breakfast (it sounded like the cheesiest, eggiest, richest consolation prize that would be safe for me), but they stopped serving about twenty minutes before we got there. They have to re-do their whole kitchen to make it so it wasn't like they were being difficult or anything. We slaked our sorrow at the Loaf N Ladle which Diane prefers and I had delicious clam chowder.

Next, we stopped at Tommie's to admire her new couch. I approve. The corner was comfy for snuggling in and the dog fit well too.

I came home, took a nap, Ellie came home, then Terry and then Emily for the weekend with her roommate. I may not be posting much this weekend due to a happy, full house. My wish for myself for tomorrow is a happy family day. I hope you are able to spend time this weekend with those you love, too.

Thursday, November 1, 2012

Day 138 - day? what day?

It is not entirely clear to me where today went. There was the two hour nap, the one hour nap, the trip to Manchester for labs, seeing my therapist and I'm not sure what else I might have done today, i.e., not much.

Patrick started the day off with an early text asking if I wanted to meet for coffee. At first I thought I wouldn't be able to because I was still in my pajamas, but then I remembered I didn't have to do my hair so I figured I could get dressed and walk there in fifteen minutes.

Next, Tommie and I headed off to Manchester for labs which turned out completely, disappointingly without anything to fix. My hemoglobin is stable at 8.7 (which is low--12 is normal, but not so low that I need a transfusion) and my platelets were 51 (also low, but not so low that I need a transfusion). There is a shortage of blood components now because of the hurricane so I am happy to know that I am not needing any today. I suspect that I will need platelets by Monday, but we'll see. I am wondering if this will be a consolidation without needing red blood cells at all. My ANC was 170 which means that I am correct to be on the neutropenic diet (grumble).

When I got home it seemed like a nap was in order, then lunch (more delicious spaghetti; thank you, John!) and off to visit my therapist. I didn't intend to take a nap when I got home, but I lay down at 2 o'clock and the next thing I knew Ellie was clumping up the stairs at 4 o'clock home from school. I guess I have a lot of repair and rebuilding that needs to go on internally.

I also read this week's NEJM, hot off the press, and found the article about the costs of health care interesting, but did not really find anything compelling enough to recommend. The cost article looked at the expenses of each HSA and each HRR. HRR's are made up of HSA's. They found that not all the most expensive HSAs are in the most expensive HRRs. Medicare is proposing to control costs by adjusting the rates they pay each HRR. If the fees are adjusted at the HRR level and costs are produced at the HSA (or lower) level and there is only a vague correlation between the expensive HRRs and HSAs, the policy is unlikely to work too well. Not the clearest explanation of the article, but it was only marginally interesting to me so that's all it gets.

I didn't mention yesterday because there was no place that it seemed to fit that the anxiety dreams had started up again for this cycle. I bet when the intracellular contents of all my dying marrow cells start circulating that some of them are psychoactive and that is what brings on the anxiety dreams. They always appear and disappear at about the same time in the cycle, along with the time period that I think is the big die off and clean up. Tommie says that she thinks it's my brain just doing its best to make sure I know I've been poisoned which I think is another good way to look at it.

Tomorrow I am spared a drive to Lebanon, which is nice, but don't get to visit Shelley, which is not as nice. Worse, when will she get her "get well soon" present? On the other hand, there is something to be said for home and only my own marrow products.

For me, for tomorrow, I am hoping for more quiet recovery. For you, I don't know; you might not want a quiet day, especially since it's Friday. If you'd like quiet, I wish that for you. If you are hoping for excitement, that is my wish for you.