Saturday, September 29, 2012

Neutropenic Fever Update

Mary is fine, but has a fever and is up in Lebanon in the hospital. This happens fairly frequently with AML and we (this is Terry) were warned that it happens to almost everyone at least once during the course of events.  She will resume posting, it may be a couple more days before she is up to it, but she is getting a little bit better each day.

Wednesday, September 26, 2012

Day 102 - beach to blech

One of the things that has surprised me this consolidation is that I have felt better emotionally and worse physically. I have also been surprised by how variable my physical state can be in one day. I felt great this morning and went for coffee and a walk on the beach with Patrick and now I feel pretty icky and would turn down even a drive to look at the beach. I am pretty sure it will pass in a few hours, just as mysteriously as it came on, but for now yuck! The good news is that I don't have a fever (99.5 has been my max so far) and no concerning symptoms: just tired and achey.

As long as I'm griping about my symptoms, let's talk about mucositis. I had a trivial amount with induction, none with consolidation #1, but now I have a small amount.  If you're curious, it started out feeling like a canker sore on the side of my tongue (nothing to see, hurt a bit), then got worse so that by this morning, my tongue was swollen enough that the teeth were embedded into it and made little dents in the side. It hurt to move it much so I sounded a little funny (mostly my "s" sounds turned into "sh" sounds). Chewing on that side is not really an option and hasn't been all day. As the day progressed, the whole inside of my mouth felt a little swollen and--you know how when something is inflamed you can feel your pulse in it?--like that. Now, my tongue is for sure less sore, my lip feels a tiny bit swollen, the roof of my mouth feels like it does a couple of days after it's been burned and my throat is just the tiniest bit sore only on the left. I worry because my first neutropenic fever was pretty clearly pharyngitis--sore on the left. However, at that point, I was on no antibiotics and now I'm on levaquin. I am very lucky because the whole mucositis thing even at its worst earlier was probably no worse than a "1" on a pain scale although I can totally believe that it could get to a "10." I can really see how it could affect people's eating because I really don't feel like eating anything that requires chewing and mine is really minor mucositis. (Thank you, Eva, for the potato leek soup!) I am going through the whole big explanation of what it feels like because no one had ever given me a good explanation of what it felt like before so, now, you know.

Otherwise, it was wonderful to see Patrick and the ocean. I napped and did the crossword and sudokus and a little driving today.

I am right about at the time that I began feeling good after my last consolidation so I am hopeful that tomorrow I will just wake up and feel great. For now, it's early to bed and off to Manch tomorrow for likely more platelets.

I am hoping for marrow recovery soon for myself. May you have recovery soon of anything important you have lost.

Tuesday, September 25, 2012

Day 101 - platelets in.

Today, Eva took me to the NCCC for my platelets. They went in smoothly without a hitch and then she, Eva and I went for a walk by the river in Manchester. It turns out you can walk about a mile and a quarter next to the river on a nice little path that is surrounded by a nice neighborhood, woodsy kind of stuff or for a little while, the ugly, unused, backside of Hesser College. There were a lot of people out running or walking and we saw what looked like some kind of a fitness bootcamp. They offered us the chance to join them for lunges, but we turned them down. There is on one side a fairly steep (10+ foot) drop to the river. Sometimes you could see shopping carts and bicycles on their sides in the river at the bottom. It was not quite as scenic as Lake Massabesic was, but had a lot more interesting things to look at.

Eva took me to visit Matt's stand and I got some mutsu, empire and macoun apples. When I got home, I was pretty tired and caught up with the day's sudoku and then took a nap. I read on the internet that some neutropenic diets don't allow *any* fresh fruits and that if I am going to eat them at all, I am supposed to be peeling the apples. Drat. I'm a little tired of this neutropenic thing.

Have you read this article about first and second sleep? It's pretty interesting. Go read it; I'll wait. I've been noticing that after chemo I do tend to sleep in two stages for a while and then after a couple of weeks, reconsolidate to one sleep period. The time in the middle of the night gives me lots of time to think and one of the things I have been thinking about is sleep through the ages. I've read that 100 years ago, lots of people would sleep in the same bed, sometimes with animals even because it was so darned cold. No one could have been sleeping very well then and I wonder if that was better or worse for our bodies than the way we sleep now. Remember how unhappy I was with the double room? Patrick tells me that there is a lot of high quality evidence telling us that people actually get better faster in doubles than singles and better fastest of all in open wards. (yuck!) His take is something like even though we don't like it as much, togetherness is good for us. In the middle of the night, I wonder if something similar is true about sleep, that we'd be better off with more bodies crowded into the bed. I remember the guy who taught about sleep at my med school saying that there had been a remarkable decline in the number of hours that people spent in bed since the turn of the 1900 century. Certainly our "sleep efficiency" is way up compared to then, but makes one think.

Tomorrow I have no plans to visit any health care establishment. My hope is to keep it that way. May you be healthy tomorrow, too.

Monday, September 24, 2012

Day 100 - negotiating for sun time

Today I visited the NCCC with Diane for labs and found out that I have an ANC of 0 and platelets of 23. This is as expected, but the ANC of 0 is a little disconcerting. When my count gets low, I feel a little like I have a low level virus (kinda raw throat, post nasal drip, tired, achey). This is scarey because how can I tell the difference between feeling like I have a virus because I am profoundly neutropenic and feeling like I have a virus because I have a virus? It's not really that I would do anything different if I had a virus except worry more and I seem to have that covered either way.

The rest of my counts were good. Hemoglobin of 11.2, liver, kidney OK except for the albumin is now 3.2. Because my platelets were low, Dr. Manno wanted to transfuse me, but they didn't have any platelets on site for me (remember the antibody thing?) so I will return tomorrow for them. I was really happy with this solution because it was a beautiful day out and I didn't want to spend it inside, looking out at the beautiful day outside. We went to The Bridge Cafe where I had well cooked bacon and eggs on an english muffin and then Diane, Ana and I went for a little walk at Massabesic Park. Some versions of the neutropenic diet don't allow eating out, but I figure how can bacon, eggs and english muffin when over-cooked as I requested be problematic? I could see not eating salads or things that were cooked ahead of time and kept around, but I feel like this is a pretty foolproof restaurant meal. I did eat out very selectively and carefully last consolidation too. The official statistic is that slightly more than half of patients end up re-admitted to the hospital with neutropenic fever. I don't know if this is per consolidation cycle or per patient, but so far I've done one cycle with no unplanned admissions so either I have been careful enough or I have gotten lucky. My guess would  be both.

I worried about the potential for mold while out walking at the park, but it's not like I have filtered air in my house either. The windows are open, I spend time outside, I went for a couple of walks over the weekend. I guess the important thing is not be around activities that might aerosolize any ground mold. I'll have Terry plow the backyard this fall.

After Massabesic Lake, Diane and I returned home to have tea and then I had a little nap. The rest of the day was spent in sudoku, dinner and soon bed. It was nice to have a couple of days where I was feeling reasonably well and able to construct a sentence with a couple of adjectives and dependent clauses. I think I may be back to "Going to bed early tonight. May we all sleep well." as my most complex thought.

Sunday, September 23, 2012

Day 99 - let out alone today



Exeter sewer pond or canals of Brugge?

Neither picture is as good as I'd like, but I am willing to keep trying
I continued making progress today in terms of strength and endurance. I was able to walk downtown by myself and go shopping. After a little nap, I was able to go for a walk with Maggie for about 1.5 miles. It was a gorgeous day and we walked around the overflow pond and by the river. A huge surprise for me was that there were swans on the pond. I had never seen swans there before; in fact, the closest swans I had seen before were in Rye. I don't know if they have been there all summer and I've been unaware or if they are just passing through. The people I saw were too busy with their (poorly behaved) dogs for me to be able to ask them and the swans weren't saying. I am hoping for cygnets next year. The swans were completely unruffled by the dogs walking on the path around their pond (it's sort of an earthen levee) so hopefully they would not feel threatened by every passerby if they had chicks next year. In Minnesota, we used to bicycle on a rail to trail occasionally that would have geese families in the spring. The parents would start hissing and get all upset as you sort of zipped by on the bike and it was a little ridiculous and a little intimidating. Of course, it was easy to see why they would feel threatened, but the bikes would go by before the geese could react very effectively (fortunately) and they would end up looking puzzled and foolish. I don't want my beautiful swans to look foolish so hopefully they will be less twitchy.

In other news, I have a big yarn package coming next week. Ellie has requested a new baby blanket because the last one I made for her didn't turn out as well as I would have liked. I did, however, learn an important lesson about rayon yarn: avoid it as I do not understand how to work with it. I also bought some green yarn to make myself a shawl because regardless of the weather for other people, I think it may be a cold winter for me. Several new colors of the cotton that I have been experimenting with round out the package.

{four paragraph warning for discussion of dreams--many people find other people's dream tedious quite understandably. if so, skip to below.}
Last night I didn't sleep very well because I had two flavors of the same weird dream, both of which woke me and made it hard for me to return to sleep. In the first one I was in the front yard and a dilapidated van pulled up and a family unloaded a very ill man on a blanket into my front yard. He was very sick: obviously had an out of control internal malignancy and a huge sacral decubitus ulcer that went through to the bone but was not painful. He was incontinent of urine while I examined him. He was very confused, telling me he was in "the promised land." It was clear to me in the dream that he was going to die very soon. His family said that he wanted to go to the beach. I told them that he was sick and they had to take him to the hospital; they said they didn't want to, that his last wish was to go to the beach. They could not tell me why they had unloaded him in my front yard. This was where I woke up and the dream man reminded me about a patient I had admitted to CMC a few weeks before my diagnosis and so I lay in bed and perseverated about him for a while.

Then, when I finally fell asleep, I dreamed that a bird somehow made me and Tommie understand that it wanted us to follow it. We had to get in the car and drive on the highway even, but eventually, it showed us where to park, we crossed the oncoming traffic and were at a beach where the bird had a nest partially behind museum glass. The bird wanted Tommie to take a feather out of its nest (which she did) and then a ranger appeared and began screaming at us that we shouldn't be there; the bird was nesting and it was dangerous for us and the bird. Again, I could not figure out why I had been involved in this drama.

It seemed like both dreams involved quests/journeys that I was invited to be involved in for unclear reasons and then uninvited. I don't know if the bird's quest was finished when Tommie took the feather, but I find the unfinished nature of the first guy's journey unsettling. I wonder who the guy is? my leukemia? free floating anxiety? some unfinished/interrupted task in my life? I like the guy as my leukemia because it seems significant to dream about the leukemia dying especially at a time when it would really be dying, given that I had chemo last week. If the guy is my leukemia, though, what is his family? After I finished perseverating on my real life patient, I redid the dream while I was awake and told the guy's family that I thought they should load him back up in the car and take him to the beach afterall. Clearly he was going to die soon no matter what was done, so I thought he may as well die with the breeze he wants. His family was right; the hospital had nothing to offer him; might as well let him smell the salt air.

With that interpretation of the old man, the bird dream becomes like an echo of the Carlos Casteneda I read back in the 80's. It's almost like the bird is the giver of the first dream about the old man and has brought me to the leukemia's nest. I cannot figure out the ranger. What is striking about her is how angry she was that I was there and that her worry about my safety was quite strong. I am curious to see what I get tonight and also to see if anyone has any good ideas about this.
{end of dream discussion}

I also had a nice conversation with Stefan about chemotherapy and how 100 years from now, doctors will be stunned that we used such primitive tools as cytarabine, analogous to how we feel about doctors in the fifties using radiation for acne. This dovetailed with an article in the NEJM about medical progress that talks about taking an antibiotic for an infection as the model for cancer chemotherapy and how in the future we'll probably think of cancer treatment more as a chronic disease. I'm ready to take my daily pill with minimal side effects that will keep my AML under control and let me continue my life uninterrupted. Perhaps the bird will bring it to me tonight.

Saturday, September 22, 2012

Day 98 - the fatigue and fog abate a bit

If this were twitter instead of a blog, the last two days' worth of entries would consist entirely of things like "I had noodles and tomato sauce for lunch," "just won a game of solitaire," "Maggie is cute. LOL." I am feeling a little bit more insightful today than the last two days. You'll probably get something more like "I had noodles and tomato sauce for lunch. It was good."

I actually felt a whole lot better today than yesterday and was able to go to the beach for a little walk with Terry which was really fabulous. The weather was gorgeous; I left my outer coat in the car although most people were in T shirts or wetsuits in the case of the surfers. I was able to walk for maybe a mile and was not even too tired at the end. This seems like real progress although I suspect that there are some very tired days ahead still as my counts continue dropping. I did not have to do any intellectually challenging things like talk on the phone to strangers today although I was able to order Ellie's takeout from Las Olas without incident. This makes me think my intellectual status is probably OK. I bought some books in the mail and it turns out one was intended to be a book of poetry for high schoolers. I was able to understand the first few poems so I am probably functioning at at least a ninth grade level. I was also able to understand (I think) the most recent JAMA (see below; you be the judge) and the most recent NEJM.

Last night, again, I slept about eight hours without interruption which was extremely welcome. I woke feeling refreshed and took two or maybe three little naps today--they seem to be getting shorter and not as deep. It all reminds me of what babies/toddlers do as they get older and consolidate their sleep from lots of medium length naps to longer at night and several naps to even longer at night and shorter, fewer naps to eventually all at night. Perhaps I am recapitulating my sleep history.

For sure, the highlight of my day was going to the beach or maybe it was lying on the couch, half asleep while the dogs rested, Tommie read, Ellie played on her computer and Terry froze a bunch of soup in the next room. Half awake, listening to Terry's noises, just barely aware of Ellie's swinging leg, Tommie's wiggling foot, the sun on Maggie's muzzle, the way Kita was snuggled into Maggie's bed. Delicious.

Let me summarize the most recent journals for you to save you the time. The NEJM has a nice clinical problem solving article which I would recommend. It's not something I think any of us is likely to see, but I would have missed it (but that's why it's a team effort; I would have gotten a neuro consult and they would have gotten it--which is exactly how it played out). It's one of those completely treatable zebras that make a great recovery if you think of it and treat for it.

The most recent JAMA is devoted to obesity research and commentary. I am not such a big fan of obesity research because my suspicion is that a lot of what we "know" about obesity is actually false, beside the point or only relevant in some cultures at some times. That said, I read the whole journal--more or less--and paid attention. The article that I thought was the most interesting was one of the last ones. The idea was that the researchers gave a bunch of people with obstructive sleep apnea (OSA) lap band surgery and then repeated their sleep studies to see how much their OSA improved. The subjects lost about 25% of their excess weight and their OSA was about as severe as it had been before. This is totally fascinating to me because, in general, OSA responds so well to weight loss--or at least that's the common belief; no one has actually done pre- and post- surgery sleep studies before. You might posit that the subjects did not lose enough weight to affect their OSA (people don't lose as much weight as quickly with lap band compared to gastric bypass), but you would still expect at least a trend towards people with more weight loss improving more and that is not what happened. This probably means that OSA is a heterogeneous disease (with many different causes or maybe even several actual diseases lumped in together with the same name because we can't tell them apart yet), that there was something wrong with the study, that OSA is much more complicated than we thought or perhaps some combination of the above.

Another article shows that people who have gastric bypass surgery (in Sweden) end up costing the health care system about the same over the next twenty years as people who start at a similar size, consider the surgery and then don't have it. People who do the surgery cost more up front and less twenty years later, especially in meds for chronic conditions (mostly diabetes). This will be interesting to watch play out over the next twenty years as it can take a long time for diabetes complications to wrack up. I wonder what effect the U.S. tendency to turn insurance on and off over a person's lifetime might have on this and also if it would play out differently in the U.S. because people tend to have private insurance for the first forty years of their adult lives and then public insurance.

As a side note on obesity, my daughter's middle school does not have a bike rack. It is also not safe to ride your bike or walk to school (kids who live less than half a mile away are bussed in) because there are no shoulders on the road leading to it. I think if we were really interested in health or perhaps if we really understood health, we would be running our communities differently. Just sayin'.

For tomorrow, I am going to hope that I feel as good again as I do today. I hope your tomorrow is as good as today was and, if today wasn't your best day, I hope tomorrow improves.

Friday, September 21, 2012

Day 97 - another tired day

Drat! I missed our three month anniversary. I know you were hoping for a nice night at a hotel and a bubble bath together, leukemia, but I'd like you to go now. We're done. Thank you for the memories and lessons, but it's over.

Last night I slept really well and would have maybe even have slept longer except for a certain little lab who was desperate to go out at 0425. I went back to sleep and woke feeling fairly good this morning. Terry drove me to the NCCC this morning. I didn't need a transfusion (hgb 11.5, platelets 70, ANC 900) so we came home without any new infusions. I ate lunch, napped and then woke as Tommie and Kita arrived. Today is the first day of Tommie's retirement! Ten minutes later, Maggie came back from her walk and then as she was getting dried off, Ellie came home from school. It was a very pleasant pandemonious scene for about half an hour. I needed another nap in the later afternoon to recover. Then dinner, shower and soon bed.

I feel a little bit better today than yesterday which is nice. I am not sure how long it will last as my counts are still going to dip down further in the next week or two and that is when I feel worst. It seems like if I just take naps constantly and eat little meals that that helps a lot. I mostly just feel really tired all over and my eyes get tired easily and everything seems too bright and foggy.

Otherwise, I am feeling pretty dopey most of the time, but fortunately no one really requires much intellectually from me. I can do sudoku still and the crosswords, but don't ask me how to cook a chicken or for directions anywhere. I can talk with people I know, but find people I don't know speak too quickly mostly. We'll see what tomorrow brings.

Thursday, September 20, 2012

Day 96 - consolidated fatigue

Let me tell you my schedule for today and you will see why I don't have a lot to say:
0600 get up, help get Ellie to school
0700-0900 sudoku, crossword
0900-1200 nap in bed
1200-1500 lunch, listen to a CME about atrial fibrillation, tie one quarter of the fringe of a coaster
1500-1700 nap on couch
1700-1900 dinner, shower, snuggle with Ellie on couch
anticipated bed time 2000.

I am hoping that your day was more action packed than mine. It could not have been more snuggly.







Wednesday, September 19, 2012

Day 95 - home again, home again!

Here are my statistics for this consolidation:
doses of chemo: 6
visitors (counted only once/person):6
meals I ordered delivered correctly by hospital staff: 8/13
meals I ordered delivered correctly by commercial take out staff: 1/1
how happy I am to be home now: infinity

Compared to consolidation #1, this one was much easier. I feel completely "with it" now (remember I was quite "without it" after my last one); I am a little tired, but not overwhelmingly so. It was harder at the beginning, however, I think, because I had five weeks off instead of the previous measly four so I was starting to see that I could feel normal if I just kept off the poisons. I was not quite so willing to get back on them as I had been the first time.

Another difference is that this time (as is highlighted above) the food service was sending in random meals at some points. I was not all that excited about eating all the time anyway (one of the LNAs said to "eat like it's medicine" and I often have to) and to have something I wouldn't like under good circumstances show up is not that helpful. On the other hand, it became a little funny eventually to see what ridiculous things might show up on the tray. Vegetarian chili? No, sorry, pork roast. Entertainment is always welcome even if random foodstuff is not. Anyway, I'm home now and had Green Bean gorgonzola salad and pesto/mozzarella/tomato sandwich for dinner. I'm stuffed and it clearly made up for several of the "medicine meals" eaten at the hospital.

A second difference is that I expanded my walks a bit. I had previously seen the signs for the "Albert Schweitzer" trail, but had never followed them because I think I felt a little fragile and didn't want to potentially stray that far from the hospital. This visit I was feeling a little more self-confident and stronger and crossed the road (after googling the trails and memorizing their routes). It turns out the trails are completely on hospital land and are about one million times nicer than the circumferential hospital trail (like, they are real woods trails that go up and down and have old trees around and roots across the path and everything). This was good for morale, too.

A final difference was that this time I officially became too uninteresting for the residents' team and was followed by the nurse practitioner. Whether or not I'm interesting is somewhat debatable, of course. I am able to grant immediately that medically I am the dullest patient on the floor (happily!), but I think by virtue of the fact that I'm a practicing doc myself I have a thing or two to offer to residents that is actually hard to get in other ways. On the other hand, they may have gotten a lot of that in their first day with me (who knows what the heart absorbs when?).

Be that as it may, initially, no one explained to me that being on the nurse practitioner's service meant that the attending would still be seeing me. This was a fairly reasonable assumption because my first day on the NP team, the attending did not round on me (the fellow had and that counts for administrative purposes and I was spending a lot of time on the afore-mentioned trail so he couldn't find me, but didn't leave a note or call so I didn't know). I thought it meant that all the faces I had grown accustomed to would evaporate and I was feeling quite abandoned. (note the recurrent problem: goodbye not said) But guess what happened that was really, really nice? The intern who had been to busy to do more than the minimum in the morning had promised to come back to chat and he did. He was under absolutely no obligation to. I was no longer his patient. He could easily have stuck his head in and said something perfunctory or he could have come in and had a short chat with me, but he stayed for a long while--asked questions he didn't have to, answered questions of me he didn't have to. I was touched and impressed. I am quite sure he's going to be really good. Then this morning, I went for a walk (to get the coffee that I have discovered I can stand) and I saw the intern again. He said hi and remembered that I was leaving today. Then a while later I saw the fellow; same thing. I have had many a non-recognizing experience in the common area of the hospital; it made me feel noticed, appreciated. I liked it. I'm not sure what the difference was this admission, but it's good.

Now, after a non-eventful ride, I'm home. I took the dog for a walk, helped a little with homework, walked downtown to get dinner, ate too much and have read one of the semi-junk journals that get sent to us. About once/year I get hooked by an interesting title or two and always waste more time than it's worth. Anyway, a meta-analysis of 300,000+ primary and secondary MI prevention shows that about 50% of primary prevention patients and 67% of secondary prevention patients being adherent to their meds (having the med on hand 75% of the time is their definition). Yikes! Beta blockers are the secondary prevention med people are most likely to skip and diuretics and beta blockers are the primary prevention med people are most likely to skip. Food for thought.

I'm tired now and going to go to bed. I am happy to have felt appreciated and noticed today by the house staff (that's the technical term for residents and fellows). I hope you are feeling appreciated and noticed. I am even happier to be home. I hope you are right where you want to be tonight.

Tuesday, September 18, 2012

Day 94 - dose 5 coming right up!

Today was a quiet day of visiting with Eva, reading a bit, sending email and two miles of indoor walking (and art admiring!).

It was a nice day without a whole lot of excitement (just like we like our days in the hospital). Tommie has been asking for a while that I explain what rounding is, how it works, etc. and it is relevant to the most recent excitement here so I guess it's time.

When a patient is in the hospital, it is important that there is one doctor in charge of them or one ends up with the "too many cooks" syndrome. Therefore, when a patient is admitted, they are given a single "attending" doctor who is their main cook. It is usually the doctor who will care for the problem that most makes the person need to be admitted to the hospital, but not always. Some doctors (mostly specialists) don't have patients on their services and sometimes a patient will come in with, say, a broken hip, but have so many other medical problems that even though the hip brought them in, they are really better served by a doctor who can manage their diabetes, high blood pressure and heart failure. The attending doctor decides which other doctors can be involved in the patient's care, writes the admission and main orders (and in some hospitals, writes all the orders) and is in control of the general course of the patient's care.

Because doctors are human, most doctors admit to "teams" where Dr. A is the day time doctor, Dr. B is the night time doctor and Dr. C will be taking over during the day in three days. Sometimes the "team" aspect of the work is split up even more, especially in teaching hospitals. These teams usually consist of something like a first year resident, a second or third year resident and an attending (a fully trained and certified doctor who could practice independently). Sometimes there are fellows (trainees who have finished residency but are working on speciality certifications like oncology) or medical students. Different teams do it differently, but the basic idea is that there is a certain amount of "work" that needs to be done for each patient and they divide it up. Perhaps the intern (first year resident) will write the note (that serves as the main record for billing and legal purposes as well as to communicate with the rest of the team) and examine the patient thoroughly. The second year resident may double check the key points of the exam, and make sure the labs are adequately treated. The fellow may double check the key key points of the exam, chat with the patient, confer with specialists and then the attending writes the final billing note (mostly referencing the other notes, but summarizing them and especially if he or she disagrees with any of their conclusions, correcting them), examines the most important findings of the patient and answers the patient's questions.

Every patient in the hospital gets that done every day. Every attending or at least every team in the hospital has a list of all the patients they need to see every day. Seeing the patient, checking up on their labs, radiology, any tests or procedures they've had, producing notes and dictations as needed for communications and/or billing, conferring with other doctors who are caring for them, answering the questions, making a plan for getting them moving in the right direction and coordinating their discharge plans are the components of "rounding" on patients. Doing all of those things on all of one's patients is "rounding."

From the patient perspective, what rounding feels like in a teaching hospital is that a collection of people, some together and some separate come in one or more times per day. Here, for me, usually the attending comes in separately towards the end of the day. (Rounds start with sickest patients and discharges first. Also, sickest and most interesting are most likely to be visited by large groups. This explains why I get seen usually by people who are alone and at the end of the day.) In general, you want to listen to the plans of the attending because they are the ones who really decide the plans. Sometimes other people on the team are better at answering questions because they may have more time or more ability to understand what a patient might want in an answer. My current attending, like Dr Hill, is good at answering questions so that is nice, but not all have been.

I get attached to my attendings as they are the ones figuring out my plan and keeping me out of trouble. Because I understand that the attending is really the main cook of the team, no matter how many other junior cooks there are, when my attending changes, I really like to know. Perhaps if I did not understand exactly why the attending role was so vital to me, I might not be so concerned about their coming and going. I mention this mostly because in the past when attendings have left without saying goodbye, I have been unhappy and without a full explanation of how the attending thing works, it might not make that much sense why I would care if just one person on the team changes.

My attending, Dr Meehan, has two more doses of cytarabine planned for me in the next 24 hours and then I get to go home. I am very happy.

I hope you are happy with your short term plans, too.

Monday, September 17, 2012

Day 93 - a lesson on benadryl

After I updated last night, John, who was my resident during induction stopped by to say hi. He was working over night in the hospital and fortunately had a nice chunk of time to come chat with me. We talked a little about leukemia, my head on leukemia, interesting patients we've seen, John's plans for next year, the various joys of medicine. Ira Byock talks about the patients' problems in the hospital being loneliness, boredom and isolation. I don't usually feel visited by any of them, but was starting to see the wisdom of Ira's thoughts. John's kind visit went a long way at helping with those things for me Sunday. Thank you!

Monday I had two visitors planned (which--see above, I needed!), but when I considered today's plans, I was a little worried because I was supposed to get chemo this morning with benadryl and then Terry was going to come visit in the morning and then Ana in the afternoon. I was worried about how I was going to be awake enough to enjoy them and be much fun for them to visit.

The morning started out OK with me able to stay awake and talk with Terry although I felt a little logey and wasn't sure I was making lots of sense. I also felt a little nauseous, like you do when you are overtired. I put up with it and we had a nice visit. Then Terry went to get lunch, I had a short, short nap and we went for a walk. When I woke from my nap, I felt completely refreshed and happy to have only spent a little bit of time in sleep rather than the whole morning as I would usually do.

Terry left, I had lunch, then Ana came and we hung out and then went for a walk. I finished the afternoon feeling great and ready to attempt to face down the benadryl the day after tomorrow. It is nice to think that I may not be forced to sleep by the benadryl unless I want to. ha! take that, you bully!

Other activities for the day included email, reading the new John Irving book, and the old Annals of Internal Medicine. There was a nice article about diabetes management in there and a very, very nice essay called "The Knot" which I would recommend.


Sunday, September 16, 2012

Day 92 - ordinary ordinariness at MHMC

The weather was absolutely perfect New England fall up here. The sun was out, there was a nice breeze. At first, I needed my jacket and sweater and then after I got walking, I could take off my jacket, keep the sweater. There were lots of birds and squirrels out, making all kinds of cute little noises. There were no other people out because the campus empties out on weekends, especially Sundays. I enjoyed my walk very much which was good because I had to work for it a bit.

I woke this morning, beautifully rested. One of my doctors evidently took pity on me and wrote an order for vitals while awake only so I slept through without interruption, then napped when I woke up. Yum!  Eight hours of uninterrupted sleep with a two hour nap tacked on, what a dream. I am not sure how to write up the rest of today without making it sound like complaining (especially whining) which I really don't want to do. I mean it to be observation.

So, I woke and ate breakfast. (The nutrition people gave me a default breakfast because for some reason they couldn't get my order straight. I didn't want to waste perfectly good food so I ate it; I don't really like french toast when I'm feeling well and it's good french toast. Ah, well, live and learn--perhaps.) Then I wanted to take a shower and go for a walk. I couldn't take my shower until my port was taped up. Wait for the aid to have some spare time. Shower. Dress.

Ready to go on walk, but Dr. Meehan is rounding. I'm not sure how long he'll be here and don't want to inconvenience him so I wait a while. Then the nurses tell me he seems to have disappeared so I go for my walk. Halfway through I get called back because he's back on the floor. He evidently told them that he would be here for hours and they didn't have to call me which they interpretted as he was leaving imminently and I should come back pretty soon. So I did. Lunch was here (what I ordered--tasty portobello mushroom stuffed with barley). Ate, was rounded upon--I'm doing fine. Talked on phone with Terry, dietary person comes in for tomorrow's choices (unless I want french toast again, I better talk with him--I asked him to return in 5 minutes so I could finish talking with Terry, he returned in 15). Finally, I get to finish my walk which was worth the wait because it had warmed up beautifully and I could take off my jacket after a few minutes and bring it in.

These are not really complaints, but the point is that I am so dependent on other people here that I cannot go for a walk without a half dozen stays and interruptions. I am probably one of the most independent patients in the hospital. I wonder what it is like for the ones who are bedbound, very disabled, have more than one wound that needs to be tended to, multiple doctors who need to round on them, etc. Yikes! Of course, the people who work here have their jobs and are probably just as frustrated by the intersecting needs of the other disciplines and the patients as I am. As a worker, however, I have several tasks to do and if patient one is not available, I can move on to patient two and then circle back to patient one so it's not quite the same as for a patient who really just has one agenda.

Speaking of agendas, for a while today, I thought of nothing but the peanut butter cookies at Au Bon Pain. I was positive they would taste great despite the fact that nothing sweet has tasted great in months. I bought one and, guess what? not delicious. We did stop at the coop on the way in Friday and bought a big bag of salted roasted nuts. These still taste delicious.

Other activities for today have been sudoku, email, reading and chatting on the phone. That's about it for today. Chemo tonight and tomorrow morning.

I hope your interruptions and delays turn out to be useful today and that you have perfect weather for whatever you are wanting to be doing.

Saturday, September 15, 2012

Day 91 - brief note on room design

Again, my roommate was very nice, and even with a nice roommate, there were some things about the design of our double room which would have made it a real trial for me to have to stay there. (maybe I would have gotten used to them? doubt it).

The first is the afore-mentioned bathroom right by my bed. At CMC, the door to the bathroom is rotated 90 degrees away from both beds, essentially, you walk by the bathroom door as you walk into the room. I think this is a much better solution.

Second, and I don't know that there is a solution to this, the nice armchair is in the window and there seemed to be only one of them in the room. This means that it was impossible for me to use it unless the roommate was out getting a long procedure without having to be stuck on her side of the curtain with her in bed, either wanting to talk with me, talking on the phone with her family or trying to sleep. This situation obviously was not going to work for me and means that I would have been stuck in bed the entire time I was in my room. It would not hurt me to spend hours in other part of the hospital, but I'm glad I was put back into a single. I'm not sure what kind of improvements would have made the chair situation better. I just don't think the room is big enough for two armchairs and the person who gets the window, gets the window.

I know the trend in well-funded hospitals as they remodel is to make every room a single which I think is an excellent plan. I know however, that some hospitals are so crowded they have, even worse, hall patients.  If I thought being in a double was terrible, how much would I have enjoyed being a hall patient in one of the over crowded city hospitals?

Friday, September 14, 2012

Day 90 and 91 - back to chemo jail

Short entry tonight as Emily is here. I'm fine. We just did a bunch of crossword puzzles. I'm in a double room, but they are having a very late discharge and then I will move into a single. Singles are so much nicer than doubles even with a very nice roommate.

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addedum
The main problem with the double room is that if you have the bed near the bathroom, there is no help for it. The bathroom door opened maybe 3 feet from my bed. The room was so small, there was no where to sit for two to do a crossword puzzle except on the bed and if we faced toward the curtain that separated my half from the roommate's half, she would not have been able to get in and out of bed. So, face the bathroom we did, quite more closely than one would like to be doing.  Both of us were supposed to save everything we produced in little hats for the nurses to measure. The very nice roommate had an ileus--basically her GI system wasn't working--which made the whole thing a little more tolerable, but I felt like I couldn't use the bathroom because it was so close--with predictable results.

I was moved to my new single around 9:30. I was incredibly tired, got my benadryl, got my chemo and went to sleep. I don't even remember Emily coming back from brushing her teeth or her making her bed. It was sure nice to see her. Thank you for driving down to see me, Emily!

I woke in the middle of the night with nausea (for the first time during consolidation). I sat up and it passed in about 15 seconds, but just to be on the safe side, I took a compazine which I think gave me a headache. I had my morning chemo, Emily went home and I napped. After my nap, I tried really hard to concentrate enough to do a sudoku, but couldn't so I took another nap. I was really discouraged at being so tired (how am I ever going to be energetic enough to go back to work if I can't even stay awake for an after lunch sudoku?), but after my nap, when I was thinking better, I realized that I napped a lot last time, too. Then I walked around the hospital outside, three times and came back to eat dinner.

 I think my port is healing a lot today because it is itchy beyond belief. I don't know why or how it would be healing more enthusiastically the day after chemo than the day before, but I like the idea that it is itchy because it is healing much better than I like the idea that it is itchy because it is about to slough chemo damaged skin, for instance, so I'm going with it.

I hope you are having a nice fall weekend and that the happy explanation is more believable than the less happy one for you, too.

Thursday, September 13, 2012

Day 89 - Planet Fitness and procrastination

As this was my last day before a triumphal voluntary return to chemojail, I thought I'd run errands, do laundry, get everything as ready as I could think of for being gone for six days and then procrastinate about packing. Really, if I'm not packed, tomorrow can't come, right? Then, I'll be forced to stay home. Sorry, Dr. Hill, I really tried to come for chemo, but my suitcase just wouldn't pack itself. Whaddya say we try next month instead? Yeah, I know, my next task after catching you up on today is to go pack. It's really not too hard because my books are already piled up and my toiletries are still packed from last trip. All I have to pack is clothes and art supplies. I can do that in the morning, right?


The big activity for today was a trip to Planet Fitness where I discovered that just because I can walk 5 miles doesn't mean I am in good shape. I had to tell the exercise bike I was 70 years old to get it to go slowly enough for me to tolerate it. The good news is that I will have some goals after this round of chemo.

I finished my weaving and was very pleased with the results. These were both experiments and they both worked out well. I visited my therapist, bought chocolate for the nurses up north and put my loom that is in storage back together. A couple of phone calls to friends, take out from the Thai restaurant in Hampton and it was a full day.

Somehow I've never mentioned the zinnia hedge in front of my house. For the last four years, I've planted zinnia and every year, I seem to plant more and more. This summer, I planted all the way across (after my landlady dug up a beautiful planting area) and then when the plants were about six inches tall, I went off to Lebanon. The area languished, I am told until a week before I was due to return when Barbara went out and weeded them. Now they are the size of a kindergartener and covered with blossoms. Earlier this summer we had flocks of painted lady butterflies and now we have monarchs. I counted about eight earlier this week, but now it's just the odd one or two.
Doesn't this just say "New England"?
Well, I can't see any further ways to put off packing so I guess I'll go drag myself upstairs. May you and I both have good tomorrows, with pleasant surprises or at least without unpleasant ones.

Wednesday, September 12, 2012

Day 88 - growly dogs and thumbs

There were so many blog-worthy things today that I had a hard time deciding on the title, but there you have it. Other contenders were that I had coffee this morning with Patrick which was a wonderful treat and, well, we'll get to the others.

Patrick's early morning meeting got cancelled so I became his early morning meeting and we had a wonderful time drinking coffee and discussing books, patients, cases, our kids, our life trajectories, etc. Patrick gave me a copy of his book which was very kind. I am embarrassed to admit I didn't have one before. I always meant to get one, but hadn't quite gotten myself to think of it when I was by a computer. Perhaps I knew if I waited long enough Patrick would give me one (joke). In my defense, I'm not a huge poetry buff. I don't have anything against it; just always preferred other forms of communication. Both Eva and Patrick have tried to help educate me and it has only helped a little bit. Once, I thought I would educate myself and so I bought "Good Poems for Hard Times," read half of it, like it and put it in my waiting room. Someone stole it. That was my last attempt at educating myself about poetry. I have never had any other book stolen from my office.

After morning coffee, then sudoku and general time wasting, I went to the beach with Maggie. I have spoken before about how much I love to watch her hurl her little furry self around after her tennis ball and at the beach, it's double the fun because she digs into the sand, then overshoots the tennis ball and half wipes out before swinging back for it. At one point, she got hot and took herself into the ocean where the water was just a few inches deep and lay down in it to cool off. Cute! We only met one other dog. It looked very happy to see Maggie and started greeting her happily, the suddenly growled at her. She yiped and ran away and it followed her. Then she ran back to me and circled around me twice with the other dog chasing her. The dog's owner finally got it together to grab her dog and we marched off down the beach. "He's never done that before!" Maggie was fine and seemed to get over it more or less instantly, or at least once she saw the tennis ball again. It was interesting to me that normally, I would have just reached down and grabbed the dog's collar, but because of the leukemia, I feel like I can't do anything with my body that might slightly put it at risk. Maggie was not in any danger at any point and I think I would have responded differently if the other dog had had bared teeth or continued growling, but in this case, I just watched helplessly. I wonder when I will stop being overprotective of myself or if this is a permanent change.

Then I did some weaving. I think I mentioned that I was experimenting a little bit with double weaving and I am very happy with experiment #1. I will wait to put up pictures until I can easily photograph both sides as they are different and that is part of its interest. I think there is enough warp for two more experiments and then if it works out right, the loom will be empty while I'm in chemojail and ready for me to teach Tanya how to weave when I come back. This is a project that pre-dates the leukemia by several months and our schedules keep not working out. Maybe, just maybe, they will sometime in September/October.

Let me tell you a lovely story. Once at CHH, I took care of a wonderful woman with a lot of good stories for a few weeks. She had not grown up in the U.S. so when I told her I would not be seeing her for a few days because I was taking my boards, she told me she would "hold thumbs" for me because that is what they did in the country she was from instead of crossing their fingers. I thought this was really cute and now when I have patients who need to be wished luck, sometimes I tell them the above story and say that I'll hold my thumbs for them. I like to because it's interesting and the expression is cute and funny and  the story honors the memory of a woman who I was quite fond of. Yesterday, one of my patients sent me a get well card that included a picture of him post-transplant holding his thumbs and the note said "Again, thank you. I am hoping you are doing well. You are in my prayers and I will continue holding my thumbs for you." It just goes round and round; he reminds me of her and we are all richer and happier for it.

Terry and I went to the Blue Moon for our final pre-chemojail Blue Moon meal. I won't be able to go there for probably about three weeks once I do chemo, so it was a nice treat. Delicious as always.

There are all the fun events of the day. I guess you could pick two and make what you felt was the ideal headline for the day for me. I like the balance of a positive and a negative and that both were events that were only events because of the processing I did on them.

Wishing you no growly dogs, confidence in your body and a good place in the cycle of love and remembrance.

Tuesday, September 11, 2012

Day 87 - more premedication

Since I ran out of time yesterday, today I drove back to Manchester and visited my office. Everyone seems to be doing well. I missed a couple of my pals and didn't get to visit the family practice side because I was running out of steam (sorry, I'll start over there next time so I can be sure to see you, Linda, ChiChi, Anne and other FP friends!) I did want to tell you about one quite moving experience I had. I saw one of my patients coming in and said hi, hugged him, exchanged pleasantries as he walked by with the MA to his room. I took care of his mother who died in my care about a year ago after I discovered her cancer was back. I was chatting with someone else when he came out and he came over specifically and said "I've been thinking and I don't know what you have, but you don't deserve it and I'm really sorry you have it." In light of the fact that his mom who was one of the nicest people on the planet had died not long ago from a disease she did not deserve, this really touched me. I was so glad he told me this and really value his thoughts and wishes and appreciate that he told me. He was clearly quite affected by my being an obvious cancer patient and I was touched by that as well.  When I regard myself, it seems like it's just me--not really interesting or out of the ordinary; I mean I spend 24 hours a day with myself. I forget the thing about how I feel about my doctors is how my patients feel about me. I am very lucky to get to be a doctor.

I also got some fabulous cards from patients who were doing well, but wanted me to know that they were coming back to me from their "fill in" PCPs, one who had gotten a successful organ transplant, one from my nearly oldest patient who is extremely lively and would be n good health for a 75 year old (except she's over 90).

Then I came home and tied on my warp and started weaving my newest experiment. So far, so good or at least no disasters. Terry has a friend who is a ceramicist. She told him once about something she had made that when it came out of the kiln looked horrible and it just happened to break. I was thinking how tremendously satisfying it must be to just drop and shatter your work that you don't like. When I don't like something I've woven, I can cut it off the loom, but it doesn't really get destroyed and it would not be very satisfying to cut it into bits, but to just drop something and have it fly into a whole bunch of pieces, gone forever! Maybe I'm in the wrong medium.

I also voted and went for a surprise three mile walk this afternoon. There were no stickers in Exeter which disappointed me.

This evening was back to school night for grade six so I went off to middle school. I was expecting to be unimpressed (because honestly we didn't like the middle school much when Emily was there), but I was actually quite impressed with Ellie's teachers, their attitudes, organization, how smoothly the whole thing went, etc. I had been hopeful for a good year, but now I'm really expecting it. We hear every year about how wonderful her class is, that they are kind to each other, that they are respectful, conscientious, pleasant. They already went on a field trip to Pawtuckaway and the teachers said they had never done that in the second week of school before. One of the teachers said for the first time in 28 years of teaching she was not using a seating chart. The vice principal said that the teachers at all the feeder schools said that this year was filled with extraordinarily nice kids. What a tremendous piece of good fortune for Ellie (and us).

That pretty much sums up my day, another really lovely, low key day filled with pleasant activities. Patrick asked me to recount the specific incident that made me feel like Dr. Hill thought similarly to how I do so here it is.

I think this happened on my very first night in Lebanon. When I first was walking into the liquid tumor ward, I saw a man with "John Hill" written on his lab coat so I stopped him and said that I had been instructed to hand these (my slides) only to him so here they were. I actually thought of something Patrick says and handed them to him with two hands. They were in a little cardboard box that looked kind of like a folio. He came back hours later after having looked at them and asked for my story and gave me the scoop as he saw it. You may recall how I got my diagnosis. Briefly, I had a virus in March, felt really really terrible and got a set of labs, really just for entertainment purposes because I felt so terrible. My ANC was 700 and I was a little anemic and leukopenic but had no blasts. I thought I am probably B12 deficient, let's take some B12 and recheck in a few weeks. Weeks turned into months and I rechecked on June 14, with a marrow to prove the leukemia on June 15.

When we went over my case, one of the things we really focussed on was why were my labs terrible in March? Dr. Hill didn't think the time course was right for that to be early leukemia and thought it might have been a pre-malignant condition (myelodysplastic syndrome MDS) which would alter the treatment plan for the AML if it were. We talked a lot about that and the implications and if there were any other blood test I had had around anywhere and then he offered that he didn't think it would have made a difference if I had gotten the lab work done sooner. I was feeling pretty foolish and badly for not having taken better care of myself and done them sooner, but I didn't think I had voiced this thought so I was a little surprised that he had picked up on it. What came next was what really got my attention however. He then said, "That's really what I think. If I thought it would have made a difference, I would tell you if you asked. [pause] If you didn't ask I wouldn't have said anything about it if I thought the delay would have made a difference." This answered exactly the question I was thinking, but was not going to ask. It is also exactly what I have said to patients, and without being asked, just like in his case. I think it is probably in the doctor communication books "too much information," but I wouldn't be able to stop myself from saying it because it is very important to me that my patients really feel I am honest with them. I felt that Dr. Hill's telling me came from exactly that same impulse--a little too much info, a little off track, but so important to the relationship that he couldn't let the moment pass without saying it.

Maybe you feel like this is standard stuff, but I don't think it is. Offering the reassurance without my asking for it and then offering reassurance that he wasn't just saying it again without my asking and finally the TMI topper of "I just wouldn't say anything unless you asked if I thought it had caused you harm" without any request for clarification on my part was such a familiar train of thought to me that I really felt like I could trust him. Here was a person I understood and who would understand me.

Of course, a relationship is not built on one moment only even a fabulous one, but rather many hundreds of little moments and there were many others, some of which I've mentioned and some of which I will mention as they happen or as I have a day without much else to talk about besides a conversation from two months ago. This, however, was when I decided that I would be OK in Dr. Hill's hands.

I hope you are able to relax in the care of your very own doctor. If not, don't be a knucklehead like me, go get yourself a doctor you are comfortable with and visit them.

Monday, September 10, 2012

Day 86 - pre-medding for chemo

In order to bolster myself for chemojail, I made a social visit to Manchester today. First breakfast/brunch/snack with Cara and Eva at Chez Vachon. Delicious! It was odd because I normally would have gotten cherry crepes with powdered sugar, but with chemo tongue, I knew it wouldn't taste good so I opted for kielbasa and cheddar. Yum, yum, but only get one crepe because they are twice the size of any crepe I have had elsewhere. I liked the idea of French-Canadian crepes with Polish sausage and English cheese. Highly recommended. It was so nice to see Cara and Eva and sit around and chat for a while. We were all very reluctant to get up and go, but managed to eventually.

Next stop, the Community Hospice House and then Home, Health and Hospice's offices. It is nice to go and say hi to everyone who has sent me cards and been so kind. I never get to see the home nurses, however, because they are always on the road, working. Except, that one of the nurses had stopped by because nature called and I didn't recognize her. I think I have been away too long! I also get to see a limited set of nurses at CHH because there are only a few on at a time. Some one made the joke that now I was all pre-medicated for chemo which I liked. The final stop will be my Bedford office which I didn't have time to visit today, due to Ellie coming home from school. I am hoping to visit there later this week.

Other activities for today were taking the dog for a walk, sudoku, the NYT crossword puzzle, weaving a little bit and an early bed. Dull, dull, wonderful.

Someone asked me today how I felt about the fall weather we are starting to have and I was surprised to hear my answer was a bit angry because I hadn't gotten my summer. It's going to be another season before I will feel back to normal, too. I will have to consider how to make myself feel like I'm getting my fall even though it will not be normal.

I'm hoping for myself that I can find what I need to feel like I've had an autumn. That's not a bad wish for all of us.

Sunday, September 9, 2012

Day 85 - a perfectly ordinary little gem


Somehow without being anything special today managed to be an absolute gem of a day. We started the day by having Ellie and Tommie open birthday presents. I was able to surprise Tommie which I cannot do often and Ellie liked her presents so a good time was had by all. Tommie liked her pillow. I also gave her a wooden recorder which she had mentioned in passing once that she would like if only one could find one. It required a fair bit of internet sleuthing; hee hee. Here is a picture of one side of the pillow, taken by Tommie. The other side is different. It is all woven in one piece, stuffed on the loom while in progress. There are hand-sewn seams at both ends, but the sides have woven seams. I'm pleased with it and happy she likes it.

After Tommie left, Ellie and I were errand central, including the grocery store for birthday cake supplies. I worked a little on warping my loom and, hurray! my VAD site is healing well enough that I can warp the loom without pain. I was afraid that it was going to be permanent, but, no, catastrophizing wizard, it is not permanent and you can weave again. I paid Matt, my favorite farmer, two visits today. The first visit was for, I thought, everything I needed from him and the second visit was for strawberries (which Ellie requested I buy so she could dip them in the left over birthday cake frosting) and to give Matt the $2 which he let me owe him when I didn't have enough money on the first trip. It was as I was driving home, eating a few of the strawberries, that I realized today was actually a really nice day. I completely missed out on strawberries this year (berries are totally off the neutropenic diet because there is really no way to clean their lumpy little surfaces very well) and then Matt had these beautiful, absolutely perfect tasting strawberries that I got to eat some of today at the end of the summer when strawberries are not usually so good. Perhaps because the strawberries were so unexpectedly perfect, I was jolted out of myself for a second into, "Wow, what a perfect day this is." I decided to stay there.

Ellie and I made her cake and she spent a lot of time playing with these keepsake figurines that she has decided she wants to start collecting. They are not intended to be toys, but she had a lot of fun making them sing and dance and act out stories. She had Terry bring home the tripod and did a stop action film of them. She spent about thirty minutes re-arranging the knick-knacks on a shelf so that there was space for the new figurines, all the while singing a song about the knick-knacks she was organizing, "we're the chickens and my legs are broken, broken, bro-o-o-o-ken," etc. while I was in the next room discovering that I could still weave. Soon after I took the dog for a 2.5 mile walk in PEA where she was the fabulously good dog she always is, hurling her furry self into the river over and over with such joy, greeting other dogs briefly and politely and coming when I call her. It is a real pleasure to have a well behaved dog (thank you, Emily). On top of that, it's always the best day of Maggie's life and that makes her so much fun to be around.

One of the (ok, The only) good thing about the neutropenic diet is that I have had to learn to cook a bit more. I really like salmon which when well cooked is ok for people without immune systems and discovered (after Emily suggested it), that you can cook salmon on the grill wrapped in foil. This solves two problems: cooking fish in the house makes the house smell and there is really no way to make the grill sanitary enough for a neutropenic person. I noticed that there is a lot of salmon juice and fat left over in the foil and wondered what would happen if you stuck potatoes under the fish, wrapped it up and cooked it. The answer: magic. It was so delicious. The only problem was that the crunchy part of the potatoes stuck to the foil, but I bet if I make it a lot and experiment, I can solve this problem. I am resolved to try!

My VAD is getting better. Picture below the jump which I note sometimes works and sometimes doesn't. If you don't want to see it (warning: no blood, but a surgical wound and bruising) and it doesn't hide the picture behind a jump for you, I am sorry. Let me know if it bothers you and I'll find a different solution that is more reliable.

I had a perfect day made out of lots of little sweet pieces. I hope for a sweet piece or two for each of us tomorrow.


Saturday, September 8, 2012

Day 84 - Fox Point Five Miles

This morning Terry and I visited Beach Pea and his studio. The kiln had been fired yesterday and was still over 200 degrees. We hung out for a while, drank coffee and headed home. Around lunchtime, Tommie arrived from the cape and I invited Kate over for a study break. She proved to be both Maggie and Kita's favorite person ever, but they left her alone long enough to eat lunch with us.

Tommie and my next activity was to take Ellie to every shoe shop in the SeaCoast looking for the ideal birthday boots for an eleven year old. We finally found them at the closest shoe shop to our house, Bootleggers, which we had not even considered until we were desperate. Next year, we'll start there. The good news is that I was able to get chocolate in Portsmouth from where else? to take up for the nurses at the end of the week when I do chemojail.

For our capstone of the day, Tommie and I did the Fox Point 5 mile road race. It is a beautiful and very fun race in Newington which we walked. Our pace was about 16 and a half minute miles, but that is ok when I think about a hemoglobin of 10.5 and a VAD two days ago. I am a little tired now, but not badly. I think I may be a bit stiff in the morning, but that is why they make tylenol. Fox Point is one of the nicest of the Sea Coast Road Race Series races and the first year was for sure my favorite. Now, it's tied with the Market Day Race for my favorite.

If you are a runner or walker at all, consider doing the Road Race Series. It's good fun and keeps one motivated through the whole summer. I have gotten two jackets in previous years and loved wearing them, but this one (which I am on target to get), will be very special. The next races are both 5K's and the first one in early October should be at a time when I'm feeling fairly decent, but I'm a little worried about the second one which will be a few days after likely chemo jail #3. However, it's only 5K and there is no rule against using a wheelchair so Tommie says she'll push me if need be. Also, the worst time is not the first few days I'm home, but a few days after that. We'll see. I may need to be wheeled to my jacket.

For those of you who read every day, you may remember that I wanted to talk a little bit about bone marrow biopsies (BMB). I have now had four, two of which were painful and two of which were not. Even the ones without pain were uncomfortable and unpleasant, but they completely lacked the electric, roving, must-be-attended-to feeling that the ones with pain featured. The difference (I've been told) is the speed that things are put into and taken out of the marrow space. Evidently it does not like its pressure changed one bit. Of course, no one wants to gratuitously hurt their patient, so you would think that everybody would be really excited to learn which steps need to be done slowly to avoid pain. You might think that slowly the non-painful type of BMB would take over and replace the painful BMB as people noticed how much nicer it was for patients to miss out on the special pain of a BMB. You'd think wrong.

I have a clinic patient who has probably had two dozen BMBs (treated in Boston). She tells me that they all hurt and that they are mostly done by trainees. Now that I have learned that a BMB does not have to hurt, I cannot believe that she has been subjected to that sensation over and over and over again, every time gratuitous. I am not sure why the better innovation has not spread; that it takes more time seems possible, but really five minutes on a thirty minute procedure? Give me a break. It is possible that those who are doing more painful BMBs don't know that there is a better way. I would believe this if it was only older docs whose BMBs were painful, but my patient's and my experience with painful fellow BMBs makes this more doubtful. Or, if it is the case, why don't they know? Why has an innovation (evidently) that makes a painful procedure merely unpleasant not widely known about? Can it be that the people doing BMBs care so little for patient comfort that they have not noticed? Certainly, if anyone does a BMB on me that is painful again, they will be educated fully on the importance of not changing the pressure in the marrow space quickly. Maybe other patients just figure that some marrows hurt and some don't and there's nothing the practitioner can do to make it better? When they mention to the person whose marrow hurt that it hurt, everyone thinks it's the luck of the draw so there is nothing to be learned here. It's all very discouraging. Not only do I not want pain with BMBs, I want painful BMBs to stop for everyone. (disclaimer: when I say I had two BMBs without pain, I really mean NO pain. I'm sure it's not completely possible, even with perfect technique to always do painless BMBs, but I am equally sure that it is possible with better technique to do far more painless BMBs. Also, the unpleasant part, the lidocaine injections, don't have a painless replacement at this point.)

The "why do people use less than perfect technique for BMBs and cause unnecessary pain" question is reminiscent of why do people neglect to wash their hands and cause unnecessary infections question. I think health care facilities have done a remarkable job at changing the culture around hand washing and we're in the midst of a culture change about treating pain. Next, perhaps, a culture change about causing pain.

I wish I understood why a simple change to a procedure that eliminates its pain is not more widespread. I hope I can figure out why and help it spread further. Even better, I hope it gets spread more widely, quickly. I hope the innovations that would make your life easier are known to you or revealed soon.

Friday, September 7, 2012

Day 83 - normal ordinariness with a side of VAD

Not much news to be had today here.

My VAD site did not wake me all night. I did not need to fill my pain killer prescription. I woke about five minutes before my alarm went off and was pretty excited to take a tylenol. I spent most of the day with an ice pack on the site and it is not too swollen now. I'm actually very glad that it will get a chance to heal before I need to use it next week. It's swollen and tender and the last thing I would want is a needle into the middle of it infusing poison. Also, the bone marrow biopsy sites that happened right before or right after chemo took longer to heal and gave me bigger scars. Having a smaller scar on my neck will be a plus. A lot of people get their VADs implanted and come back from the OR with it accessed, ready to go. I'm glad mine is getting to heal first.

Other news from today is that I went out to lunch with Diane which was lots of fun. We went to the Loaf and Ladle and I had another bowl of that delicious fish chowder which is still highly recommended by me. It was so nice to see her and Friday is not a usual day off for Diane so it was a special treat.

I wound a nice warp this morning and started to put it on the loom and then I discovered that the back and forth movement right at chest level that one does when one warps a loom really sets off every single little bit of the VAD wounds. Drat!

I came close to caught up on my journals today and the August 30 NEJM has a great clinico-pathological case conference if you are into medicine. It's a great story, too and I won't say anything more than that.

I think it's bed time for me. Below the fold is today's VAD picture.

We all have wounds, surgical or not. I hope you are able to heal well. Me, too.

Thursday, September 6, 2012

Day 82 - good news, VAD in, dinner had

Today had two pieces of excitement: my bone marrow results came back a day early and I got my VAD. Dr. Hill called me to tell me they were normal just as the nurse was calling me in to pre-anesthesia for my VAD. I did get to talk with him a little bit, but mostly just had to go so I could do my pre-op stuff, i.e., hurry up and wait.

Dr. Hill said the flow cytometry came back normal and the microscope view came back normal except there weren't as many cells as they might expect so something is surpressing my bone marrow, probably the stupid virus. There was NO, not even a speck, of evidence for leukemia resurgence. So, excellent, excellent news. Phew! I am going back to plan A of consolidation #2 on September 14.

I will be getting this consolidation chemo through my brand new port that Dr. Mahon put in today. This was my first time at CMC as a patient and it was as wonderful an experience as I expected. Of course, I knew almost everyone who worked on me today, even in the OR because many of the nurses had worked on the floors before the OR. I saw several of my doctor friends, including Dr. Fahmy. He asked me if I were no longer in practice and I told him I had leukemia which he had not known. CMC clearly takes patient confidentiality very seriously, as he is one of the VP's at CMC and didn't even know why I had evaporated. Impressive. It was delightful to see all my old pals and to feel really well loved, supported and cared for by the people taking care of me.

Dr. Mahon said that Dr. Hill seemed surprised that he just said, "OK, we'll put the VAD in tomorrow." Dr. Mahon and really all the CMC surgeons have such a nice "can-do" attitude. One never feels like they are looking for an excuse to not do something; they answer yes instinctively. Speaking here as a doctor not a patient, it is so wonderful and makes life so much nicer.

Let me tell you about the day. I got there at 2:30 as instructed, hungry and thirsty. They had me put on a gown and wait in the bed. Dr. Mahon had some sort of other case in specials that was taking a longer time than expected and the nurse kept telling me it was a "zoo" today. This is probably about the best one can do. I don't really want to know just before the surgeon takes me to the OR that there were unexpected complications in the previous case. "Oh, he was caught by surprise by that bleeder and, you know, coding a patient takes a lot longer than you might think." Or "he didn't plan the previous case before you all that well and there were several complications that we weren't prepared for."

Anyway, the OR nurse came and interviewed me and was one of my old E200 friends and it turned out also knew Eva who had stopped by to say hi. Then we waited a long time and started to worried that by the time I went to the OR, had my procedure and recovered that poor Ellie would have been alone a long time. So, we enlisted my back up driver, Ana, and Terry went home to Ellie. Soon after he left, Dr. Mahon came in, examined and interviewed me and then the anesthesiologist who was one of the few I hadn't met. He had, however, been at a talk I gave a few months ago about palliative care so that was nice. He told me he thought it was a good talk. He was really interested in how I had gotten my diagnosis, how treatment was going, etc. and we had a very nice chat. I warned him that I was a lightweight for benzo's and he gave me one milligram of versed and I started to tell him the story of how I went to the cancer committee the day I had my suspicious CBC and how the next day everyone kept saying, "did you know you had AML when I saw you yesterday morning?" but I didn't get more than two sentences out. Next time I see him, I'll have to finish the story.

The next thing I knew, port in place, I was back in pre/post. I think I dozed off one more time, then woke ready to eat toast and drink cranberry juice. I dressed, Ana came in and off we went. Home to Terry, Ellie and delicious pizza.

I couldn't figure out exactly where in my day to put this jewel, so the end is as good as anyplace: here's a tip for budding nurses and doctors: "I feel for you, but the people I really feel sorry for are the ones who have to go without drinking for twelve hours" is maybe not the most sympathetic thing to say. A better option might be: "I feel for you; let me see if anesthesia will let you have ice chips." Try it out; it only hurts a little.

Other than that one nurse who I think was trying to be sympathetic, but was just slightly to the side of sympathetic, everyone, absolutely everyone, even the woman who was moving the extra beds around was kind, sympathetic, supportive, even loving. Totally blown away by the great care.

For you, I wish you an experience so much better than you were expecting that you are blown away, too. For me, I'll go with not too much pain and swelling from my new VAD.

Alternatively, I could wish you good news too and for me, I have no further wishes along those lines since I got my good news today.

Wanna see my port? I put it after the jump so you can avoid it if you want to.


Day 82 - Dr Mahon and the VAD call

I am not sure if I'll be energetic enough to update tonight after getting my VAD, but will try. "Posting may be sparse," as they say, while I wear off my anesthesia. So if there is nothing more tonight, it just means I'm sleeping well (again. Last night I slept 10 hours and woke 10 minutes before my alarm--love it!).

I did want to tell you about how my VAD got arranged because it's a pretty good story. First I should tell you what a VAD is, huh? A Venous Access Device is a little implantable device that attaches to a blood vessel on one side and pokes up just under the skin on the other side. Nurses who know how to do the magic with special needles and then access a big vein directly without having to poke me five or six times or to dig around. It is put in under a little bit of anesthesia in the operating room and when it's done and healed will look like some one has left a stack of three nickels under my skin near my clavicle. When I get chemo and blood products, the nurses can just use that instead of giving me an IV (that may or may not last/work very well) every time.

Initially, Dr. Hill, Terry and I decided that I would just get my VAD in Lebanon before my chemo next Friday. Then, when the question of if I'd need chemo early came up (see yesterday's post), we decided to try to get it sooner. Dr. Hill called his usual go-to person who said they were having a bad week and he would do it if it were a real emergency, but otherwise, really couldn't. Dr. Hill knows this guy well enough that he knew what that really meant so we decided I would get it in Manchester. Trouble is, Dr. Hill does not know anyone in Manchester and Dr. Manno was out Tues and Wed this week. It seemed the easiest and most straightforward way was for me to arrange it.

My first thought was that I would call one of the physician assistants for the surgical group in Manchester and ask her to arrange it. Unfortunately, it was her day off. I called one of the surgeons and he also did not answer. I should mention that I am doing all of this while lying on my stomach with the top half of my butt exposed because I am being prepped for a bone marrow biopsy. Finally, I developed a molecule of common sense and called their office and asked for the doctor on call. I felt a little bad about bypassing the normal channels (I try really hard just to be a regular patient), but if the situation were reversed, I would want the doctor who was also a patient to just call me so I decided it was OK to "press one if this is a doctor's office" after some soul searching.) The connection was horrible and I didn't recognize Dr. Mahon's voice at first and half of what he said and I said was lost in static so finally after saying "who is this?" about six times, we figured out the basic players in the conversation.

Next, I had to ask under the same circumstances (while not moving because my backside is now a sterile area) if he could place a VAD. At first he thought I wanted a Hickman (which is sort of like a super-PICC and has a bunch of tubes outside my body--not what I wanted) and I had to try desperately to remember the name for the kind of device I wanted (I failed--still don't know it). All the while, every other sentence in each direction is being lost to static and I am wondering when the first shot of lidocaine into my upper butt/lower back is going to occur. I am imagining trying to speak a coherent sentence without changing my tone of voice while Beth injects.

Dr. Mahon sensibly asked for the name of my doctor and called Dr Hill and not more than ten minutes later, Dr Mahon's nurse called me (I'm still lying on my stomach with a half bared butt, but now there is a big needle sticking out of it) to tell me that I should expect a call from CMC scheduling and that they'd do it tomorrow (now today).

I'm ready! I have not eaten since midnight nor drunk since ten so I am thinking the pillow I just finished would be tasty with a little dijon mustard. I am supposed to be there at 2:30, expecting to get surgery at 3:30 and home for dinner by 5:30, blogging by 8:30 if all goes according to plan. If not, I'll try not to wake the neighbors with my snoring.

Hoping for a solid eight hours for all of us (except those who are supposed to be up all night--I wish you your eight hours when you want them).

Wednesday, September 5, 2012

Day 81 - another bone marrow biopsy

Just to let you know I am bone tired tonight and so this will be very short. I did get the thread last night and finished one of the two ends of the pillow this morning. I am so pleased with it. I won't put a picture up until Tommie sees it this weekend because I want her to see it in person before she sees the picture.

Terry and I went up to Lebanon and got my labs which were just about the same as yesterdays--no worse, but no better. Dr. Hill said that he was pretty sure that this was just due to the virus, but that there was a little chance it was due to leukemia relapse and (of course) that is the kind of thing that is best caught and caught early so we should just do the bone marrow biopsy and then we would know. I tried to talk him into putting it off until Friday, but he pointed out that then if I had relapsed we would have lost several days, maybe even more than two because of the intervening weekend. OK, fine.

Beth, the nurse practitioner did it and I told her I'd give her an A+. There was nothing that was painful about it and she confirmed that it's all in the speed of inserting and removing things from the bone marrow space. There were a couple of times when I said to myself, "that could become pain," but it didn't. Her assistant and I prattled on and on about the best restaurants in the SeaCoast and she told me about a great chocolate and bakery shop near Lebanon. I am hopeful that my love of sweets will return and I can visit there in earnest in a few months.

I would like to write more about bone marrow biopsies and pain, but that is not happening tonight.

Also, just in case I need chemo this weekend (I won't; I won't; I won't; the leukemia is not back!), I need a port placed. The nurses who put in the PICC lines said (very nicely) that they do not want to see me again because my anatomy is too weird. The surgeons in Lebanon said they would be happy to put an access device into me next week, but unless it is an emergency, they can't do it this week. So, I called Dr. Mahon and didn't even have to beg. I am sure it was one of the odder phone calls he has gotten from a patient asking him to put in their own device, but he was very gracious and I am getting my VAD tomorrow afternoon.

I hope you are able to get help getting what you need without having to beg. Thank you, Dr. Mahon.

Tuesday, September 4, 2012

Day 80 - I'd rather have a normal day, thanks.

So, today I had a set of labs done at the NCCC in Manch. Dr. Manno had wanted to follow my platelets and hemoglobin to normal. The labs were a little surprising today; we were not able to follow my hemoglobin or platelets to normal today. Or, more worrisome, even my white cells. My hemoglobin had improved to 10.5, but my ANC had worsened to 1230 and my platelets were still low at 104. My liver and kidneys remained normal. This far out from chemo every time we check my labs they should look more and more normal until the next consolidation and these labs looked less like normal in two of the three cell types. To me this looked like a catastrophe. (Remember I'm good at jumping to the very worst possibility.) I was sure the leukemia was back with a dozen of its biggest and meanest cousins and I was worried. OK, I was more than worried and sure I was heading toward a transplant and all sorts of bad stuff. Maybe I should stop reading the primary literature on AML.

I called Dr. Hill's office and left a message with the secretary. I waited a whole hour and then half an hour more and then I couldn't take it any longer so I called and spoke with Dr. Hill's nurse, Elise. I have spoken before with Elise and she has always been extremely helpful. I think she was impressed by how anxious I was about this and told me that she would be sure that Dr. Hill saw my labs but he would probably be unable to call me back until 4:30. (Note number one, be sure the person taking the message understands the urgency to me of the message. Note number two, it really really does make a difference if you give people a time to expect an answer.) Dr. Hill did call me back at about 5:30 and pointed out that I had had a bad cold last week and that that was probably what caused the drop in my counts. O, yes, that. Remember those quaint old days when I would have some symptom and say to myself, "Something could be wrong with me or I could just be overworking; I'm sure it's overwork."? Now, almost any symptom can and will be attributed to the return of the leukemia. Dr. Hill further told me that he could not promise me that it wasn't badness causing my labs to be weird, but that it was much more common to be due to a cold. In fact, he had seen suppression of cells due to virusses a lot in the past and had seen it due to leukemia relapse much much less frequently.

He also pointed out that my hemoglobin was improving which is not what we would expect if it was the leukemia causing the drop in white cells (if the leukemia was back, one would expect it to make all the cells decrease) and he reminded me that my leukemia has been very well behaved so far and recurring so early and during active treatment would not be consistent with what we have seen of it so far. OK, deep breath.

I was reminded (and I told him) about how a big piece of what doctors do is holds patient worries for them.  I cannot tell you how much better I felt after talking with him. Now when I have doctor/patient events like this, I try to remember to turn it around and think about being a doctor myself. I can recall having conversation when my patients either said they felt or clearly felt tremendous relief and am amazed that I can do that for someone, too.

The plan is to go to Lebanon tomorrow and re-do the labs there. Then I will see Dr. Hill, we'll look at the results (he'll probably ask the pathologist to look at the smear too) and decide if it looks reassuring or potentially bad. If it looks potentially bad, we'll do a bone marrow biopsy right then. If not, we'll drive home and I will not get another hole in my iliac crest.

I can't remember if I've mentioned that after the whole leukemia treatment thing is done and a couple years behind me, that I have wondered if I would use my bone marrow biopsy scars as the basis for a tattoo. Not quite sure, but maybe and, if so, I have some starts of ideas. The funny thing is I'm not quite sure how many scars I'll end up with so how exactly can I design around that?

So, today was filled with a lot of worry, but I was able to soothe myself pretty effectively with weaving. I am making a pillow for Tommie's office and yikes! it just flew this afternoon although I did seem to do a lot of unweaving and re-weaving. I am really pleased with it so far and cut it off the loom less than an hour ago. I went to finish it and d'oh! I have not a single spool of thread in the house. Not a one! Not even a bobbin that I can pretend is a spool of thread. I am thinking of running up to Walgreen's right now so that I can finish the pillow tomorrow morning before we have to leave for Lebanon. Can you tell I'm excited about it?

Other than worrying and weaving today, I didn't do a whole lot although Ellie and I made a trip downtown after school. She got her usual sandwich from The Green Bean and I got some really delicious fish chowder from Loaf and Ladle. I was disappointed it was not clam chowder before I took my first bite, but that didn't last long. She was not disappointed by her sandwich from The Green Bean. It has three ingredients and always tastes exactly the same.

So, today's news is not the best news I've ever given in these pages, but I'd like to encourage you to think it's going to turn out to be viral. I am really no longer anxious about it and wish that you won't be either. I'll let you know tomorrow if my labs were reassuring or worrisome (or most maddening, in the middle) and if I am the proud owner of a fourth hole in my back or not after we get back from Lebanon which will likely be five-ish.

I know you will be praying and thinking and hoping for me and I appreciate that. Thank you.

For all of us, good news and a surprisingly good bowl of chowder.

Monday, September 3, 2012

Day 79 - another normal day, wracking them up!

Again, today has no exciting activities. I walked with the dog and then with Terry, around four miles all told and wove, sudoku'ed and ate falafel. A well spent and utterly normal day. Maggie was not limping after today's walk. I took her on a shorter than usual walk just to be on the safe side and that or the day off or random chance seems to have helped her.

It's back to school for Ellie tomorrow and back to the NCCC for me. I am really hoping for an uneventful visit with normal labs. Hopefully everyone's back to work and school day will be uneventful--unless you want excitement, then I hope you get it!

Here is a picture of me from 2007. It is the oldest picture of me I can find on my computer.
I think I had just gotten the necklace as a Christmas present. I am not sure why my hair is so desperately in need of a haircut. This must have been about the time I started growing it out and perhaps I hadn't learned about barrettes yet. I thought since the rest of this post is so dreadfully unexciting that I would try to liven it up a bit.

Sunday, September 2, 2012

Day 78 - Eva and my sudoku addiction

Last week I found out that there were going to be a whole bunch of hard sudoku puzzles released today  for the purpose of people trying out for the U.S. sudoku team. Actually they were released yesterday which means that I didn't get to try out for the team (which is OK because I don't want to go to Croatia Oct. 1-4 as I have recovery from consolidation to do--not that I would have made it anyway, but a gal can pretend). But...the puzzles are still available. If you want to download the puzzles, you have to make yourself a login. I don't know if you will get a bunch of mail from the puzzle association or not. I haven't gotten any yet, but I registered just today.

Ahem, not that I'd notice for sure, because once I got my hot little hands on those puzzles, I stopped long enough to do about the minimum possible. I had a really nice visit with Eva, made dinner for Ellie and hung out a bit with her and Terry and ate my own dinner (delicious falafel from Eva--thank you!). Not much else. I am not sure I checked my email, went to the bathroom, took the dog out, etc. Sudoku is a tremendously guilty pleasure for me because I could easily become one of those people who sits in front of their computer for 23 out of 24 hours a day and I recognize that as a bad outcome. It is incredible to me how I am really quite disciplined in general, but have no ability to withstand the charm of those little empty boxes.

Back when I was working, I used to try to limit myself to one puzzle a day, but honestly I just couldn't do it. I really had to stop altogether or I'd find myself up at 0300 doing "just one more puzzle." I'm sure I could have stopped any time I wanted. Actually, I'm not sure that I could have and it really just worked out best if I didn't do any. Now that I have more time during the day, I have been limiting myself to the three in the NYT and have actually been thinking that they are pretty easy and not that much fun to do. Then, this huge collection of first rate puzzles comes along. Fortunately, it is very limited so I will waste two or three or four days on it and then emerge bleary eyed with sore hands and poor personal hygiene and then return to the world of the respectable. This is incredibly pathetic, but absolutely true. I hope you do not think too much worse of me for it.

I also did the tiniest bit of weaving today and decided not to walk the dog because the last two times I walked her she ended up limping later in the day (ok, it is also self-serving because sudoku). We'll try again tomorrow. I did walk myself a little bit with Eva (the usual 1.8 miles to the end of Swazey parkway and home).

I continue to feel great and hope you do, too. I wish you a happy Labor Day; hope you have a three day weekend and that you feel appreciated for all your labor. For those of you who are in unions, especially if you are working to make your workplace or the world better, thank you. A final plug: if you are at all a sudoku fan, do check out the puzzles; some of them are really first rate.