Wednesday, October 31, 2012

Day 137 - journals and possible chemo brains

Today I spent as usual: weaving, napping, reading. Diane came over with a huge bowl of delicious spaghetti sauce and meatballs and a package of noodles. It turns out that both Ellie and I feel John is a good spaghetti sauce chef. I sat down and ate two delcious bowls right away. Ellie may have had three. That good cook gene has clearly been transmitted to the next generation.

Ellie's blanket is coming along nicely. I am not sure how much yardage is finished yet, but I've been working on it long enough to have a warp thread break so that's a while. It looks really good; I am very proud of it.

The dogs were very silly today. Kita went with Barbara and Maggie and the rest of the crew today and both dogs came back even more exhausted than usual. Kita, smaller by half, but dominant by full, got to sleep in Maggie's warm, soft doggie bed. Maggie slept in the kitchen where she could keep a half awake eye on the meatballs. Kate came by to say hi and it turns out that one of her dogs has bilateral trigeminal neuritis. Who knew? Sort of like dog Bell palsy. I am waiting for some one with cattle to tell me their cow has it too.

I am matching the dogs well and am pretty tired myself. I have runs of energy and then lie around doing nothing. I did walk downtown twice in search of the perfect get well present for Shelley which I ultimately found. It's nice to put my newly and dearly earned knowledge of being a patient to use.

This week's NEJM has two articles that are well worth most people's time. There is an excellent review of irritable bowel syndrome. It is really the best thing I have seen written on IBS anywhere, ever (granted, I am not up to date on the IBS literature). If you are even marginally interested in the syndrome, read the article.

The other article has been in the news a lot and is really interesting: "Patients' Expectations about Effect of Chemotherapy for Advanced Cancer." What the researchers did is ask a whole bunch of people with metastatic lung or colon cancer if they thought they chemo they had decided to take was very likely, somewhat likely, a little likely, not at all likely or unlikely to "cure" their cancer. Using the usual definition of "cure," in this case, the correct answer is "unlikely," and around 30% of patients with advanced lung cancer and 20% of patients with advanced colon cancer got it right. 25% of patients with advanced lung cancer and 35% of patients with advanced colon cancer thought palliative chemo was very likely to cure them with another 25 and 35% thinking "somewhat likely." There is a very nice editorial which lays everything out very nicely, but I think the whole question really boils down to "if you ask a dying person what they believe will be the outcome of a treatment they have already decided to take, what do you think they will say?"

I imagine that people would have reframed their expectations at that point and hope for a "cure," like "more time" or "the spots will get smaller for a while" and, of course, they believe that the chemo can deliver that "cure" to them (the rest of the statistics support that patients understand they can expect symptom relief and life extension from palliative chemo). OTOH, the editorialist points out that 25% of Medicare's spending is in the last year of life. If patients are accepting palliative chemo hoping for a chance at eradication without return, who would not accept it for life prolongation/symptom relief, this is a problem.

The authors reference a study showing that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure. When I read that, I tried to imagine how I would feel if I were in that study. It would depend on what "substantial increase in life expectancy" meant and if there were some other potentially better option I was giving up, but if "substantial increase" was substantial, I'm in. (Luckily, I have available and am getting treatment with a much better chance of a cure that is not toxic.) Of course, I'm in the biz and I understand statistics so my view is not typical. But--if patients are really valuing "cure" as medically defined so highly, what are they thinking when they agree to palliative chemotherapy? (which is mostly not toxic so it's not apples to apples, but I think you get my drift).

If you are finding my train of thought a little hard to follow tonight, don't despair. Terry feels like I'm not quite thinking perfectly. It is actually really hard to hear that someone thinks you are not thinking well; how can you defend yourself? I felt that I had been thinking pretty normally; what other perceptions about myself/my thinking/the entire universe were suspect now? There were tears (a lot of tears), but after Terry told me he felt my reasoning and thoughts were ok, that I just didn't seem to have the usual level of vigilance/alertness and his faith in my ability to carry out automatic tasks was marred, I felt better. He always knows how to flatter a girl.

Tomorrow I am going to get labs. I am hoping this time that there will be something to fix in my labs that makes me feel more energetic and helps out my brain. For you, I hope a solution you have been seeking will start to appear. If you are not seeking a solution to some interesting problem, I hope you get to get busy soon because I think solution seeking is one of the funnest things we humans get to do.

Tuesday, October 30, 2012

Day 136 - this n that

This morning when Barbara came to pick up Maggie she had a brie baker for me. I have never made baked brie and I don't really think I'd ever had baked brie before today, but now I have and it's pretty tasty. I exulted so much in eating brie in yesterday's post that Barbara felt I needed a brie baker. It probably turns out that today is my last for sure day of non-neutropenia so I will transition myself to the neutropenic diet in the morning and I really had to eat the rest of the brie today. What I did was cook it as the baker suggested and then took it to Tommie's. We called up Barbara and she joined us eating brie and watching the sun set on the river. It was nicely relaxing.

Other activities for today include weaving some of Ellie's blanket. I am getting the challenges worked out and it is growing pretty quickly. It is so fuzzy and warm looking that I think it will be tough to hand over to her.

I also spent some time on the CAPC forum websites, imagining my professional life out there waiting quietly for me. I'm getting excited for being done with all of my various poisons and on to regular life again--mid December or so. I still do not know the specific next poison that Dr Hill has planned for me, but will keep you updated when I do.

Other activities for today were a little walk through downtown which was totally gorgeous today--the sun was out, a gentle, fresh breeze was blowing,  there were constant clumps of people out walking and enjoying the day (perhaps because there was no school?). I took this nice picture of the dam and this out of focus picture of a crazy bird that was hanging out in the river. There were two and I was not able to get either in focus. This is an example of the kind of thing the iphone camera is not that great at. I could carry around my point and shoot in addition to my iphone for just such situations.
All the overflow is coming out the sides; the dam wall is dry. There is strong consideration being given to getting rid of the dam as it serves no purpose any more.

Our photogenic river, taken from the String Bridge, looking upstream.

The weird bird. It's quite thick looking with a white chest and brown other parts and a waterfowl kind of beak.

More photogenic Exeter. It's hard to believe that this was the day we were all so worried about with Sandy. We were so lucky in the seacoast of New Hampshire. That's the public library behind the island. The children's room has a window that is right out over the river and worth a visit, especially in the spring melt.
This consolidation has been so much better than either of the others. I feel really quite good: easily fatigued, but energetic between rests. My mood and thinking seem to be fairly normal. My mucous membranes are intact. Hopefully, things will stay good this time. Tomorrow, Diane is coming for a visit and I have no other plans planned. Thursday will be my next set of labs.

I hope for myself for tomorrow a day of recovery. I hope for all the folks who are submerged or still damp, a quick recovery. For you, I hope a peaceful day with recovery if needed.

Monday, October 29, 2012

Day 135 - yummy!

I feel badly because I really enjoyed today and I know it was a miserable day for a lot of other people. My day started with Tommie and a trip to Manch for labs. I ran into a couple of people I knew which was nice and had my labs drawn without complication (or pain/discomfort). My labs were great: ANC 1,130, hgb 8.7, platelets 152. This means I do not need a transfusion and I can still eat a regular diet.

Once they called me to let me know, we decided to celebrate by having lunch at the Green Bean. Since I will not be able to have brie soon (too much fungus), I had a grilled brie sandwich with tomato and took home a salad for dinner. Ellie always gets the same: french roll, provolone, ham, potato chips so she is never disappointed. Tommie and Terry looked pretty happy too.

Terry and I continued to look at the surf (bad, citizen, bad, bad! "Avoid parks, beaches and low lying areas") which was incredible. I didn't really get any good pictures of it, but here's what I got.

Lots of churning surf and gawkers like us

Jenness beach which is usually very wide and the water which is usually pretty flat
There were times when you could look out to sea and see that the surf was higher than the top of the car. Going out to look at the surf was probably not our smartest move, but beautiful and fortunately we lived to tell the tale. It made me think of what it's like on a summer day when the waves get going a little and the ocean sucks the sand out from under your toes while at the same time the waves push forward. Except it was doing it at a huge scale. The whole of the ocean in the zone closest to the beach where you sometimes see surfers was filled with white foam. When you looked out further, it looked like a crazed cake froster had thrown vanilla frosting at a canvas in a not particularly artistic pattern. There were huge drops in height of the water at times and spray going over onto the road.

Next, since again I can eat brie for a couple of days, we stopped at Nancy's for cheese. Nancy's theory about why I've done so well with my chemo is because I am not afraid to eat anything. I have to think that there is some wisdom in that. Surely brie, Matt's locally grown produce and all the salmon have been good for my marrow. If nothing else, they've been good for my psyche. I *would* like to take this opportunity to point out that this doesn't mean I don't do the (hated, much maligned) neutropenic diet, because I think I do adhere pretty well to it.

On our way home, we stopped at Matt's and he had one basket of my favorite variety of raspberries. I am not quite sure of their name; it's similar to Polonia. They are huge, not as sweet as most raspberries and have a mild floral taste. They are late in the season so if there is an early frost, you don't get them. I think Matt does not really favor them because of this, but with global warming, we have had them the past three years. I have not really had raspberries this year because it just hasn't worked out: when I've had cells, Matt hasn't had berries or vice versa and, well, I only like the raspberries varieties that I like, but today was my payoff. I took a picture of them with a little gold pin so you can see their size and texture. 

Queen of fall produce

Then we came home and I had a three hour (!) nap from which I woke refreshed and ready to take on the world. Sadly, all that I needed to do was a little email and then it was dinner time. Again, taking advantage of my white cells, I had the gorgonzola salad from the Green Bean (mold, lettuce that may or may not be washed appropriately, have the walnuts been thouroughly toasted? otherwise, fully neutropenic compliant--i.e., totally and completely wrong). Then Terry and I lay on the couch and watched the big trees between our house and Doug's get tossed around. Our house is 140 years old or so and it is nice to think of all the people it has sheltered over the years just like it was sheltering us tonight.

I think I'll do a little weaving tonight. I remember one time reading where a woman said it took her nine months and nine days to make a huge dining room table cloth. Nine months to be intimidated by the size of the warp she had to deal with and procrastinate, then nine days to do the actual weaving. I think I am responding similarly to Ellie's blanket.

Tomorrow, I will not, not, not be getting any blood components which makes me happy. I hope I will be cozy in my little house and that you will be too. If you are in an area where you are not affected by the storm or you do not wish for a cozy day, I wish you something that fills you with as much happiness as late season, huge raspberries did me today. Otherwise, may we all be safe and cozy.

Sunday, October 28, 2012

Day 134 - not a speck of news

Today being official run up to the storm day and all, there was not much to be done except nap, weave and make delicious salmon again.

I was really a champion sleeper today logging twelve hours in bed at once and then another in a nap late morning. I feel pretty refreshed actually and maybe even a little energetic, oddly enough. I went outside with the dog and then decided that the backyard really had to be cleaned up, the hose wound etc before the big storm got here. For some reason, it seemed very important to me that the storm not find our long hose all in a mess, but rather neatly wound up. I'm thinking this might be progress in terms of my energy level although maybe not in terms of my common sense.

I also went out by myself and ran some errands. I noted that despite having had chemo recently, my brain seemed to be working better than most of the ones I saw evidenced in the grocery store parking lot, to say nothing of the gas station. I was glad I parked as far out in the grocery store as I could, people seemed to have forgotten how to use their rear view mirrors at the Stop n Shop.

My big activity for today may have been winding the warp for Ellie's blanket. I'm almost done with it and it's pretty big. It doesn't seem to have any errors which is a relief. For those who wondered, when I went back to the website I bought the yarn from, they recommended 5 ends per inch so I decided to go with 6 without a sampler, having seen 8. Hopefully, I will not be a wiser and sadder weaver soon.

I also finished "Beautiful Swimmers" which I highly recommend. I see its writing in 1976 as a strong point as the book is becoming a description of a more and more distant way of life. It was fun to read and imagine being baked out on the Chesapeake Bay, coated in salt water, while in reality, we are all a little waterlogged here in New England with a little rain coming before the big storm.

Tomorrow will be a visit to Manchester to get labs checked. I'm hoping for enough white cells that I can still eat yogurt, but am not optimistic. I think I'll finish the StonyField tonight. Such a small wish, hanging onto my white cells for a couple days longer for me. I'm not sure if it really is a useful wish, truly, because I think there's just a certain number of days without white cells--have them now or later. Perhaps I will readjust my wish outward and wish for safety from the storm (whatever storm) for all of us. You won't mind if I use your wish tonight for that, too, will you?

Saturday, October 27, 2012

Day 133 - HOME!

Today was notable for more chemo; no problems; de-access the port; go home!

It is so nice to be home now. We stopped at Fred's Fish Daley and got some salmon. We thought it would be a good idea to tea-smoke chicken and grill salmon at the same time so the potatoes that were tucked under the salmon got chicken juice in them and tasted a little bit like chicken potato soup.  Not bad, but not what I had in mind. The salmon, however, was delicious as was the chicken.

Tommie stopped by to say hi after the Music Hall opera simulcast. It was nice to see her, of course. After dinner and Tommie, Terry and I went for a short walk through town and a person who was already preparing for the big storm by drinking a little extra told us he had a few more preparations to make to be completely ready for the storm. Fortunately, he was walking too.

A lot of people have asked me what the rest of the plan is for my leukemia so I'll tell you what I know now. There are a couple of different types of markers and we did not get some of them for me for complicated reasons I don't want to go into. We did get some of them, however. These markers are called cytogenetics and the idea is that a tech in a lab looks at your chromosomes and tries to see if there are any big breaks or segments that are switched with each other or flipped upside down. If this happens, a gene that says "grow, grow, grow" could get stuck next to a different gene's on-switch and the grow gene could get switched on permanently. This is, in a simplified form, what causes cancer, when one gene's on-switch gets attached to an incorrect gene. My cytogenetics were all normal. There are some breaks in the genes that are considered "good prognostics" and if you have those, you only get three rounds of consolidation because it is such wimpy leukemia. If I had had that marker, I'd be done now. There are some breaks that are such "bad prognostics" that you go straight to bone marrow transplant from some one else. I did not have that marker either. I am in the middle, with the rest of the great unwashed, and it is unclear exactly what to do with me.

There is a study in Ohio which has been collecting information to answer just this question. The options under consideration are 1) a fourth round of consolidation (so I'd have one more) 2) an auto transplant. Dr Hill has asked the people in Ohio to please tell him what they their data looks like preliminarily and they have not yet. He keeps joking that I will show up for my next appointment for surprise treatment. I think it's a funny idea, but I am sure he'll get it sorted out before I need it.

Assuming all goes well this consolidation (which I now know is not a good assumption), I will be ready for surprise treatment #4 around Nov 21. Likely, I will be in Leb for Thanksgiving; I never liked turkey anyway, but the sad thing is that I will miss Terry's open studio. Terry has been distracted this year, so it won't be his best ever so I guess that's a small comfort.

Given how smoothly today went for me, I am hoping for another smooth day tomorrow. I hope your tomorrow is as smooth as today, or if today was not so smooth, I hope it's smoother for you. Please be safe and keep your wits about you during the big storm.

Friday, October 26, 2012

Day 132 - a visit by Diane

Today's big activity is that Diane came to visit. We went for a nice 2 mile walk and had a chit-chat and lunch and it was great to see her. Otherwise, a quiet day with napping, catching up on the crosswords and reading taking up the slack.

Chemo round #5 is scheduled for about an hour. I wish it was scheduled for this very second because I want to go to bed now. Then chemo #6 in the morning and then home for this little chemojailbird just after lunch. They tell me that almost no one is discharged from MHMC before lunch; they just can't get themselves mobilized to do it. I will be able in all likelihood to be home in time for dinner so that will be very nice. I will be so happy to see my family, dog, bed and couch.

Tonight is sort of interesting because I have been admitted on Friday night three of my five admissions. It has been very rare for me to stay over from Thursday to Friday. Friday evening at MHMC is a little louder and sillier than the other nights. When I was being admitted on a Friday and part of the general mayhem, I didn't particularly notice, but this time, when I was admitted on Monday and am several days in on Friday, I can't believe how high energy the evening nurses and the new patients coming in are. Geez! Why so happy to be coming in to the hospital? I realize this paragraph sounds very curmudgeonly. Maybe I'm becoming my own grandfather.

For me, for tonight and tomorrow, I am wishing for speedy, uncomplicated chemo infusion and then speedy, uncomplicated flying out of here. I hope for you, too, that you are able to do unhindered any tasks you do tomorrow.

Thursday, October 25, 2012

Day 131 - 4/6 chemo's down

Well, I forgot who said it on my last consolidation, but one of the docs said that each consolidation will hit sooner and harder and, yup, they seem to be right. I was so tired that I *couldn't* stay awake during chemo this morning and then after lunch and my very much truncated walk (0.6 or so miles), I felt I had to take a nap *again*. I actually even had a visitor that I slept through which is extremely unlike me so I guess I was really tired!

I did have a couple of local visitors that I was awake for and that was very nice. John, a third year resident friend from a previous admission stopped by with a poster for an ACP conference and I proofread it for him, making little suggestions to make the story clearer. That was fun and I got to chat with him briefly about how he's doing otherwise, how life is, etc. I really liked seeing him.

Marv, the writing coach (?), faclitator (?) stopped by to chat. He had a writing group tonight that he said I could join for the evening and that was fun.

Since there's not much to tell you about today that happened in the outside world, I'll tell you about the state of the marrow space which we have not visited for a long time. At the start of this admission, it was filled with snap dragons of all colors that were really thriving. Somehow it felt important to let the plants know that even though they were being flooded with poison, they were loved and I hoped and expected they'd be back soon. So, I went into the garden and brushed my hand over each of their little tops. This was not what they wanted. Each plant wanted individual acknowledgement and for me to open the top flower on the stalk and put the tip of my index finger inside of it (which I used to always do to snap dragons when I was a little girl). Then, as I floated around the garden (floated so that I did not damage any flowers), I would come upon areas of various sizes on the ground with no growth at all. These areas were areas where the leukemia was hiding and I had to take my (now) real corporeal feet and a shovel that appeared out of nowhere and turn the dirt over to a depth of six inches, break up the clots and leave it alone in order to root out the leukemia. I am always astonished at what comes out of my unconscious mind. The fingers, the floating and the turning over of dirt. What a pleasant way to cure one's cancer!

For tomorrow, for me, I will wish the chemo success in rooting out the hiders. Do you need help rooting out anything? If so, may you get whatever help you would prefer tomorrow.

Wednesday, October 24, 2012

Day 130 - coming right up! chemo

Today was a very nice day. Stefan stopped in this morning on his way to lecture and we chatted for a while. He became the second person in less than a week to ask to hear "my story." It's funny how these things work. I haven't told it in ages, then all of a sudden, twice in one week. Hopefully, I told the same story both times!

Later in the day, Tommie came to visit and we chatted, ate lunch and went for a 2 mile walk. This makes three days in a row. I did get quite short of breath on this walk too, but I bet when I'm not anemic, I'll be able to walk and talk at the same time.

I haven't brought you up to date on the best articles in the latest journals in a while so let me do that now. The Oct 24/31 JAMA had only one article I liked much. It was the "Piece of my mind" by an oncologist who had prostate cancer and who wrote about "Cancer Survivorship and Beyond." It is kind of interesting, I think until near the end when it really picks up steam and he writes "A cancer diagnosis is obviously unwelcome. There is no minimizing the sense of threat, and clearly one wants to survive. But by moving beyond the focused identity of cancer survivor, one opens oneself to fellowship with all in the grip of life's fragility." I thought that paragraph was really lovely and kind of captures what I don't like so much about "cancer survivor": it makes it seem like the life threatening experience of cancer is a special club that people who have other life threatening diseases or just the life threatening condition of being alive can't ever aspire to. Except he said it better. There were a bunch of articles, but none of them was really very interesting to me.

The Annals from 10/16, however, had lots of good stuff in it. There was a really cool study of reusing resterilized ICDs in India. It's not legal exactly, but a group of people collected them in the U.S. and sent them to India where people who in no way could otherwise get them, got these fabulous life saving devices and the devices went on saving lives. Very, very cool. Then there was this other study where they took a dozen normal people and had them sleep normally four nights, then did a fat biopsy, then had them sleep for 4.5 hours/night for four nights and did another fat biopsy. They were hugely more insulin resistant in the sleep deprived state. We've talked before about how closely linked I think sleep and weight/metabolism issues are. Another little piece of evidence.

I'm still reading "Dying for Beginners" and still recommend it and still having fun with "Beautiful Swimmers." I haven't posted pictures of my darkening hair recently so here are two, taken with my fabulous new phone. You can't tell the texture of my hair, but it seems to be about the same. the color is a little bit darker, actually less gray and less white. This is the opposite of what I was expecting, but just fine. I'm not entirely sure that the first picture looks like me.
It's really me, but doesn't quite look it to me.

This is me, too with a nice cytarabine/decadron apple cheek rash

Since tonight is chemo night for me, I'm hoping for a quiet, non-eventful, sleep-filled night. That's not a bad wish for you, unless you want a rowdy, busy, awake all night kind of night. In that case, I hope that's what you get.

Tuesday, October 23, 2012

Day 129 - late night blogging

 I confess; I was just about to jump in bed when I realized I hadn't blogged yet today. My public awaits! I postponed bed to update you because today was an interesting day.

The morning was occupied largely with reading of "Beautiful Swimmers" a book about "Watermen, Crabs and the Chesapeake Bay." One of the volunteers here gave it to me and the Chesapeake Bay has been important to lots of people who are important to me so I thought I'd better read it. I've also been reading "What have you lost?" a book of poems. In the first section, people seemed to have lost their younger selves. In the second section, people seem to have lost their countries of origin. People who have lost their countries of origin are not so relentless about balancing up what they've lost and recovered as the people who wrote primarily about lost youth. It is unclear to me what this might mean. We'll see what people lose next.

As for activities, last night was not my favorite night. I like to go to be at 8:30 or so and at 8:15 my nurse came in and asked if anyone had told me I was moving rooms. I said, "Yes, you just did about two seconds ago." When I came, the nurses kindly put me in the biggest room, but evidently there was a very large patient whose need for the largest room (and the largest bathroom--it makes me tear up to think how nice it was) was greater than mine. The patient who was in the room prior to me discharged at 8 pm and housekeeping could not get the room done until 10:30. I could not stay up until 10:30 so the nurses rolled me into my new room and carried all my stuff in for me. It was very sweet and silly. Then at 0230, my stomach which had not been the happiest for about a week (won't go into TMI details) thought it would take this opportunity to start barfing. I had declined (as I always do) any anti-barf meds (technically called anti-emetics) because I don't (ahem, didn't) need them and they give such unpleasant side effects sometimes. I declined them again at 0230 because I felt pretty good after barfing. Then about thirty minutes later, I started again. This time I accepted the meds. I don't really know if I needed them or not, but I was not interested in more barfing. I had more chemo this morning with no problems and no anti-emetics so that is good, maybe it's all settled out. I hope so for sure! It's funny because my main emotion when I was barfing was that I was really mad because I had made it through way more than half of treatment without any barfing and now! I was starting. I think it was a combination of pre-chemo stomach virus or something, mushrooms for dinner and chemo.

The interesting thing for me, however, was that about twenty minutes after I barfed the second time, my nurse came in with zofran and my eyedrops (which have to be given every six hours; could they please be more inconvenient?) I really really didn't want to do my eyedrops; it felt like such an imposition. I recognized this in the light of morning as a little excessive, and even at the time I was able to reason myself to there is no better time than now to do it, just do it, but it took a lot of concentration on my part not to whine. However, my eyes are still beautifully white (the cytarabine gives people a similar rash on their conjunctivae to what it did to my stomach. Remember that?) so they are doing their job--onerous as they are. It was just really interesting; after barfing and being messed with once I didn't want the eyedrops. I occurred to me just this second that I wonder if I would have responded better to eyedrops first (maybe because I had the strength in me for one intervention) and then zofran (because that was the intervention I wanted). Hmmm. Might be an applicable thought in other areas of my life, too.

After barfing, eyedrops, zofran and then morning sudoku, general goofing around and Beautiful Swimmer, Eva came to visit me. We went for a 2 mile walk and I noticed that going uphill while chatting was doing me in more than going uphill while not chatting did the day before when I walked alone. (My hgb is still only 9.6--a little low.) At first, I was puzzled about why Eva was stopped at the tops of little hills and seemed to be waiting for me to walk down first, then I figured out that she was being very tactful because I was breathing hard.

Stefan, Terry and I had talked the other night about anxiety in cancer survivors and I wondered if there were studies of meditation in anxiety reduction among cancer survivors and there were some. My assessment is that the older ones are not that great and don't show a difference, but the newer ones are better conducted and seem to be somewhat positive for the few limited cancers that have been studied. It is very hard to believe that learning to meditate and practicing meditation would not decrease anxiety in cancer survivors (or really almost anyone). I would love to see the Norris Cotton offering meditation courses. Another modality I know nothing about that seems to have some positive results is called "mindful movement."

After that, it was time for bed and I'll likely be asleep by 9:00. Not too bad.

For me, tomorrow I'll hope for improved GI function. For you, whichever bodily system is giving you the most troubles, I hope improves a bit tomorrow. If you are so lucky that none of your systems is troubling you, I will hope that are able to appreciate tomorrow just how lucky you are. Maybe you already appreciate how lucky you are that you have a perfectly functioning body? I am not sure what I might hope for you for tomorrow. A really good cup of coffee?

Monday, October 22, 2012

Day 128 - no chemo--yet

The very exciting good news is that my CT scan was fine. The pleural effusion that I didn't know I had was gone; the lung nodules that I didn't know I had have not changed and, in fact, look like old granulomatous disease (like histo, given that I lived in the midwest for 25+ years). Somehow I thought I had mediastinal lymphadenopathy and that was never there. So, maybe I was a *little* delerious or at least have some memory problems due to the fever.

I think I was much sicker than I really quite understood. I realized today that, Linda, the chaplain, came to visit me during my last admission. I had not remembered that until this afternoon. My LNA today told me she took care of me for a couple of days my last admission. She does not even look familiar.

I was much more anxious today in Dr Hill's clinic, in the CT scanner and even at our favorite grocery store that we always stop at on the way in and out (we didn't stop last time because I was in an ambulance) than I recall being before. It was not quite to the level of a panic attack, but it was pretty strong. I feel OK now that I am here in the clinic and I am hoping that it will just abate going forward now that I have redone at least some of the things that I did when I was sick. We'll see how getting chemo goes which should happen in an hour or so. I've never gotten chemo when I've been sick (of course, they don't give it to sick people) so it *should* be OK.

Otherwise, I went for a lovely 2.2 mile walk in the woods by DHMC today. I have a 4S phone now which has a much better camera so I can take nice pictures like these:

Flowers tucked into the edge of the driveway--my 3 could not get details like this.

A stream on my favorite DHMC walk. Last time I was here, it was dry. I like how the light is very low and hits different parts of the scene differently.

I will try not to become insufferable with the camera and how nice it is, but it may be hard for me because I am so happy with these pictures.

I am hopeful that I can do chemo tonight without a panic attack or any other event. For you, if you have a bad memory that is pestering (or worse) you, I hope you can make some progress in freeing yourself from it.

Sunday, October 21, 2012

Day 127 - a quiet pre-chemo day

Not much to report on for today: weaving, napping, 1.5 mile walk, dinner at Tommie's, another try at eating ice cream. I was hoping to get the weaving all set up so that when I came home from chemojail all I would have to do was sit down and start, but not quite there. I was successful at my nap. Terry and I went for a nice little walk which is always a highlight of the day. We wanted to have Green Bean for dinner, but figured out at 3:59 that they closed at 4:00 so not to be. We had Penang and Tokyo instead. They have this very plain chicken noodle soup (nabe yaki udon) which is one of my favorite things to eat in the world. It would be great comfort food during chemo, but I doubt it could be made neutropenic friendly due to all the vegetables so I had it today and I'll just have to remember it when I am having a bad day and wish I could eat it. We went to Stillwell's ice cream store which is my default ice cream store and I ordered my favorite, chocolate with peanut butter. It tasted almost normal which is the effect of five weeks off chemo and Dr. Hill will fix that tomorrow. but in December I will get six weeks and then seven weeks off chemo and I bet my taste buds will come back to normal just in time for Christmas cookies.

There have been a couple of good journals recently; let me point them out to you. The Oct 17 JAMA has a great article on smoking cessation which is a very important topic and I thought the article put it all together very nicely. There were also two interesting research articles. The first was examining trends in lipids in US adults over the years 1988 to 2010. The average cholesterol and all of the subfractions (LDL, non-HDL, HDL and triglycerides) have all improved for men, women, Mexican American, Non-Hispanic White and Non-Hispanic Black. The most telling table I think is the last one which charts LDL of people not on cholesterol lowering meds from 1988 to 2005 in each of the demographic slices I mentioned above. The biggest decline is in non-Hispanic white men from 132 to 119. The smallest is in Mexican American men from 127 to 123. When I started reading the article I thought about all the emphasis on lower fat higher carbohydrate diets that has happened since 1988 and expected that people's LDLs would be lower, but thought there would be an increase in triglycerides that more or less cancelled out the LDL lowering, but triglycerides seem to be lower too (I couldn't find a table that didn't include people on cholesterol lowering meds which has also gone up a lot since 1988). Really interesting stuff. Those kinds of differences, lowering a single persons' risk by 0.1% or whatever the improvement is, when applied to the millions and millions of Americans there are can make a big difference. Very cool. I have actually noticed an increase this year in how many people are riding their bikes and walking in downtown Exeter. I don't know if it's just a local phenomenon or if it's a trend, but I'm hopeful. The next step would be that they would put a bike lane in the road that goes to the middle school in town, but that might be too hopeful.

The second article that I thought was really interesting, not because I will do anything with the info, but just because wow! is a trial of chloride rich versus chloride poor IV solutions for volume resuscitation in the ICU in a single hospital in Australia. They found that chloride rich solutions lead to more kidney failure and dialysis. It may not have been the best done trial in the world as the average person only got 5 liters of fluid which doesn't seem that fluid down to me and there was no real mortality difference which you would sort of expect if you were going to have a big difference in the amount of dialysis you were doing. I have always wondered about how internists give normal saline (chloride rich) and surgeons give lactated ringer's (chloride poor) and how each specialty clings to their fluid as best. I have wondered if there really was a difference and now I have been informed--maybe.

This will be my last dispatch from home for a while. I'm off to Lebanon in the morning for more taste bud distorting, leukemia killing HIDAC. My hope for myself for tomorrow is that the HIDAC is highly effective. For you, I hope whatever enterprises you start tomorrow are highly effective, too.

Saturday, October 20, 2012

Day 126 - quick little ordinary day and dinner

I'm not sure where today went. I had breakfast in Kittery with Terry, did a little weaving, walked 2.4 miles and had dinner at Stefan's (yum!). Sadly, Ellie is, in fact, too old to go to the Exeter Fall Festival so I didn't go either. I have years and years of memories of going on the horse pulled hay rides with her and this year, none. That is, of course, what happens. All things must end. I boycotted the whole affair and took the dog to PEA. We had recall lesson today (recall is the fancy word for the dog comes when you call her) because when we started out Maggie thought maybe she didn't need to listen to me. Turns out she does and she is actually pretty good at it once she realizes that she has to.

I think I wrote a poem earlier today; you can tell me what you think.

That is the sum of news for today, my penultimate day before chemojail #3. I am hoping for a relaxing, fun filled day for me tomorrow. I hope the same for you.

what occurred to me while I was walking

Now that I am almost fifty, my body which used to be ready and willing to gamely try whatever I came up with, has become a teenager. It wants to stay in when I want to go out and go out when I want to stay in. It has taken up risky behaviors like leukemia and asthma. It likes to hang out with friends I do not approve of like Tums and cytarabine. In a while when my body is no longer a teenager, it will not return to be a compliant pre-schooler. It will be a young adult and feel it can move to Santa Fe without warning me because the weather is fine there.

I wonder where these things come from sometimes.  It almost seems like it needs more linebreaks and to be called a poem.

Friday, October 19, 2012

Day 125 - back home

Not much to write about today either except that chemojail starts in 2 days. Did I mention that when they were trying to figure out why my fevers took so long to go away, they did a CT scan of my chest, abdomen and pelvis? Well, they did. It was astonishing how quick the whole thing was. It felt like the chest took about 15 seconds and the abdomen and pelvis took another 15 seconds. It seemed they spent way more time whirring me into and out of the machine that taking pictures. I also remember that they had the best warm blankets; it seemed like their warmer may have been set 5 or 10 degrees hotter. Mmmmm, cozy!

Anyway, the chest CT came out slightly abnormal: I had a single moderately big lymph node, a whole bunch of slightly bigger than they should be lymph nodes and some "tree in bud" stuff in one of my lungs. "Tree in bud" is just how it looks (doesn't mean I have a tree preparing to flower in my lung) on the CT picture. It can be associated with infections, especially fungal and weird cancers (not leukemia). What does this mean? Well, we don't really know. Most likely that I had a little infection in there, the lymph nodes were reacting to it and now that my immune system is better, it's all gone. At any rate, Dr Hill thought we should take another look before chemojail just to be sure it's not bigger (in which case we might want to investigate a potential fungal infection before we wipe out my immune system). So, Monday morning, before chemo jail begins, I get a repeat visit to the CT scan. Hopefully, they still have the good blanket warmer turned on.

Tomorrow, Stefan has invited us for dinner which we are looking forward to. Tommie has invited Ellie over for dinner so they are excited too. Maggie has been invited over for her first visit to Tommie's on Sunday so if she could understand, she'd be excited as well. Tomorrow is the fall festival in Exeter which is always very sweet. I am hoping Ellie is not too old for it! You can see we have a lot of fun things planned for my last two chemo free days.

I hope we all have fun filled relaxing weekends.

Thursday, October 18, 2012

Day 124 - away from home

Sorry to be posting so late. I am fine. Not to make it sound like I've joined the CIA, but I am away from home, having a nice time and not at liberty to post more about my activities. Next week, I will start my training for parachuting into the world's most dangerous hospice situations. If that goes well, my next challenge will be to live under water for six months, breathing only through a reed--while getting consolidation #4.

Actually, just being silly. Thank you for the space and understanding. May you have them in the quantities you need when you need them, too.

Wednesday, October 17, 2012

Day 123 - technology problems

Terry got a new iphone today. I will get his old one and Ellie will get my old one and her phone that cannot play games will be so much junk. However, it turns out that I forgot my password for my iphone so I couldn't get my backups off my computer (I could backup to my computer, just not restore from it). I called Apple and two phone calls later they had a very time consuming way of doing it that required me to touch every piece of music I had bought from itunes, but would otherwise work. Then Terry and I started seeing if we could figure out a better way and eventually we did. As part of doing that, Terry helped me set up the new password on my iphone, "Ok, now go to 'notes' and put it there." I searched around and found "notes" and lo and behold there was an entry there "iphone backup password." I never use the "notes" function and would only look there when the set up ws exactly the same as the time before. It reminds me of a million years ago, I went on vacation and put my work badge in a safe place. Then when I came home, I couldn't remember where it was, so eventually I had a new ID badge made up. A couple years later, when I went on vacation again, I was putting my ID badge away in a safe place and what was there? the defunct, extremely safe two year old badge waiting for me. Arg! My brain and what? my will? my psyche? sometimes do not communicate as effectively as I wish they would. Anyway, I have now ripped out the remaining one quarter inch of hair that was starting to grow back everywhere.

Today, I spent most of the day visiting folks at Home, Health and Hospice. I got updated on lots of people's news and am getting very excited to have my life back again which is due to happen towards the middle of Dec/early January. It was nice to see people and there was actually a piece of paper with a verbal order I had given on June 14 for me to sign. June 14, of course, was the day I had my labs done that came back on June 14 saying maybe leukemia and then on June 15 (my first day of leave) they came back saying for sure leukemia.

I forgot to tell you about the ocean yesterday. There was a stiff breeze from land to sea (instead of the usual sea to land direction) and as the waves crested with their foam blowing towards the land, the wind was blowing in the other direction, blowing the foam away from the land. I felt like I had been sent through the centuries and across the world to a Japanese wood cutting. It was beautiful.

After my visit to HHH, I was exhausted and took a nap. When I woke, I sent Emily a text and she called me back and I got to chat with her. I told her what Ana told me her mom used to do which was to call and leave a message saying "I just want to let you know our phone number" and then she would repeat their phone number which hadn't changed since Ana's childhood. She thought it was funny, too. She's doing well; working hard and doing all the college stuff she's supposed to be doing. I continue to be a proud mother.

The final bit of news for today is that I got my labs from Monday and they're very nice. My ANC was 1590; my hemoglobin was 9.9 (we won't go into the TMI of why it's not going up better); my platelets were 192. All very good. My albumin which had nadir'ed at 2.7 (!) is now 4.1 and my ALT was just a speck high at 53. All good numbers.

I am so tired right now and in addition to the tiredness of being up past my bedtime and having had a busy day, there is the special tiredness of a frustrating evening with the iphone. I am hopeful that we will get it straightened out and I can go to bed soon.

Technology: can't live with it; can't live without it. For tonight, I'm just hoping for an iphone that can make calls. For you, I'm hoping for no technology snafus.

Tuesday, October 16, 2012

Day 122 - lots of little things

Today was a fun day made up of lots of little fun things. I had coffee with Patrick this morning and then did the sudoku and crossword puzzles. I then visited Matt for apples and went for a 1.5 mile walk on the beach. It was high tide so the beach was short and narrow. I went to Portsmouth, had some coffee, got chocolate for the nurses next week for chemojail, got bagels and visited Nancy at the cheese store--more bean salad, yum!

For dinner, we had Bai Cha and ate it at Tommie's house at her dining room table, sitting on chairs and eating off china. It's like she's really moved in. It was wonderful to eat at her place and be in the same town.

I haven't heard about my labs from yesterday so no news there.

I am hopeful for good labs when I finally hear about them. For you, I'll also hope for good news.

Monday, October 15, 2012

Day 121 - a little visit to Manch

I had to get labs drawn today and as long as I was in Manchester, I paid my old office a visit. I also went in to see my boss to discuss coming back to work when I'm all consolidated. It is fabulous to think that I can see or at least intuit the light at the end of the tunnel so I really enjoyed that visit. It is always fun to go see everyone in the office too (didn't run into any patients today--weird) and hear what's new or (ahem) new to me. Everyone seems to be doing OK which is nice to see. I listened to Dr Kim discuss with a secretary how difficult it was getting a stress test approved for a patient--reminded me of the part of work I do not miss (no names were mentioned--totally HIPPA compliant).

I got my labs drawn and then continued socializing. I made one mistake and missed my morning snack on my way in. I knew there was a New England Bagel somewhere near my office but then couldn't find it so I just decided to be hungry--mistake. Then at almost exactly three hours after I started my visit, I became very tired. Back in the old days, when I got tired, it was like tiredness would sidle over and maybe toss an arm over my shoulder after a while. If I didn't respond, it would put its head on my other shoulder and then maybe jump into my lap. Now, it's like tiredness is standing on a balcony one floor up and dumps fatigue on me like it would dump the contents of a paint can on an unsuspecting pedestrian. I'm just lucky it doesn't drop the paint can on my head too. I still had people to visit so I continued my walk around and then fled for lunch. Lunch helped a lot, but when I got home I was sure glad to see my bed.

Other activities for today were to run the sampler through the washer. This is where the last blanket really did not do well so  had my fingers crossed and thumbs held. Fortunately, it held up beautifully and came out with more even tension and nicer than it went in. I'm still turning over the wisdom of doing a sampler versus the nuisance of doing yet another sampler. I also took Maggie for a short walk downtown with Tommie and her dog, Kita. Water Street Books allows dogs in the store and feeds them dog treats. Maggie goes right behind the counter and sits because she never forgets how to get a treat.

Tomorrow I have no plans at all at this point. I'm OK with that. I hope you are OK with your plans for tomorrow.

Sunday, October 14, 2012

Day 120 - I go out walking

Today was dominated by no nap and a two mile walk with Tommie. My knees are sore, but otherwise, I'm OK. I'm working on that endurance; it seems to be coming nicely.

Patrick suggested that I save my own copy of the whole blog so that if something happens to blogspot, I still have it. This seemed like a good idea, but because not only is blogger horrible, but it is even more horrible on a mac, after 22 minutes of cutting and pasting, I have only finished Oct/September and I managed to wipe out one of my entries. Drat! It says that I have the entry "saved" in draft format so one would think I could revert to the original, but that button is no longer present. Not sure if it's lost and gone forever or if there is a bit of hope for it. I'm going to wait until tomorrow when I'm thinking better to have another go at it.

I finished weaving the sampler for Ellie's blanket and think it might be a tad too tightly packed. I wove at 8 ends per inch and think 6 might be a better weave. I really don't feel like weaving another sampler just to ascertain that 6 is right, but I also don't feel like weaving a blanket at 6 and discovering that it's terrible. wah, wah, wah tonight.

Something that's not wah, wah is how nice it is to have Tommie in town. It is really fun to call or text her and say "Let's have breakfast tomorrow" or "Let's go for a walk this afternoon" and have her be able to join right in.

I'm hoping for fewer annoyances for me tomorrow. Everyone can do with fewer annoyances, right? I hope that for you, too.

Saturday, October 13, 2012

Day 119 - moving Tommie in and mucositis

Today was most notable for it being Tommie's moving day! She had help from the Hansen clan, her friends, Dan and Cindy, and Eva's son, David, besides me, Terry and Ellie. It was quite a crew, but her apartment held us all beautifully--a good omen for parties in the future. Everyone except for me moved stuff off the truck, into the elevator and into her apartment. My job as the wimpiest of the wimpy was to keep Kita, the troublesome terrier, out of trouble. It was perfect for me because first we went for a walk around the drainage pond and then we sat in the apartment and looked out the window, talked to everyone as they brought stuff in and whimpered for Tommie. (I didn't do much whimpering.) The walk was probably about 0.75 miles, perfect for me, nowhere near long enough for Kita. It is very nice to have Tommie in town. We cannot quite see each other's roofs from our houses, but almost. It is about five blocks, door to door. I have alluded to that Tommie lives in an apartment complex right on the river, across the river from downtown Exeter. Her apartment faces the river and is beautiful. It is called the Mills and is a rehabbed mill building with two story high ceilings and windows (five of them), two loft bedrooms and tons of storage.

Otherwise today I wove a bit (almost done with the sampler for Ellie's blanket) and napped a bit. The dog is starting to take liberties and is thinking that perhaps I would like her to nap with me in my bed (wrong!). She usually stays down on the first two floors, venturing up to the third only if she really needs something or is invited. She has started coming up recently without an invitation. This will need to be stopped. If only I were a nice dog owner and would let my dog sleep with me... (I've been down that road and ended up needing a bigger bed--not doing that again.)

Additionally, there is a really good CPC in this week's NEJM (10/11/12)--I'd recommend it to any medical type. The main articles are about sugar sweetened beverages and their conclusions are basically that it matters to people's weight if they habitually drink sugar sweetened beverages or non-caloric beverages. Not really a big surprise there.

The other thing I've been meaning to talk about for a long time and haven't is mucositis (mucous-itis), the really annoying inflammation of the mucous membranes that happens to people without many white blood cells. What happened to me in my last hospitalization is that I got mucositis, got a break in the mucous membrane on my tongue and the bacteria that lives in my mouth got into my bloodstream and wreaked havoc for a few days. The interesting thing about mucositis is that most people just say that you get it, it happens randomly, but I'm actually not sure.

I think mucositis is analogous to osteonecrosis of the jaw. You may have heard of osteonecrosis; it's what can happen (does happen very rarely) to people who use bisphosphonates. The idea with osteonecrosis is that the mouth is a very special environment with a lot of micro-trauma happening to the jaws due to chewing, things poking into the mucous membrane, etc. The bisphosphonate keeps the injury from healing and one develops osteonecrosis. Here's how I think it works for mucositis. Again, the mouth is a very special environment with a lot of micro trauma to the mucous membrane (dorito chip corners poking into it and scratching, bits of rice hull getting stuck under the gumline, lots of tiny burns from tea, pizza cheese, etc.). What happened in my case was a little bit of vegetable matter of some sort got stuck under the gumline on the inside of one of my teeth and became a locus for infection. When I slept that night, where my tongue touched up against the infected gum became infected too and by the time I woke up in the morning, it was too late to stop it even with extra brushing and Listerine. Added to the bad luck was that some of the bacteria in my mouth had become resistant to the antibiotic that I was taking. Drat! So, my theory is the mucositis is actually started not randomly but by microtrauma to the mucous membrane. My hope is that if I am more vigilant, I can prevent another episode of mucositis and the neutropenic fever that went with it.

The other thing I am thinking about a lot is that I am starting to feel really pretty good again and that means it's getting to be time for chemo. It's really pretty lousy that us cancer folks get to feeling pretty good then have to drag ourselves back in to clinic for chemo. We feel much better with the cancer than with the treatment. Especially since I can't see my cancer or point to a lump that is receeding in size or even look at an xray, it feels like gratuitous torture I'm signing myself up for in nine days. I understand intellectually, but feel internally like those cartoon characters that dig their fingernails into the doorframes as someone drags them out by their feet.

For me, I'm hoping for the grace to get myself to Lebanon in nine days. For you, I hope for the grace to do whatever the next right thing is in your life.

Friday, October 12, 2012

Day 118 - lots of happiness today!

Yogurt for breakfast; brie for lunch; Bluemoon for dinner (I've been thinking about "chicken under a brick" for about a month); last dose of ceftriaxone; port de-accessed; a shower without any plastic attached to my chest. Lots of happy things happened today!

Other than the above excitement, I took a nap, wove, ran some errands (Maggie has food now, hooray!) and went for a walk. My endurance is slowly building up. I walked about six blocks yesterday and was pretty much done in. Today I walked about eight and could have done a couple more. Maybe tomorrow I'll try for a mile. That's about it for today.

Tomorrow Tommie is moving in to her apartment in Exeter. I hope it all goes smoothly for her. I hope all your enterprises go smoothly tomorrow and always.

Thursday, October 11, 2012

A request for help

DHC is doing a reading of writing done by sickos (like me). I have been invited to participate and am not sure what I might offer to read. Would you think about which posts (since this is really the only thing I write) you have liked the best and think might stand well by themselves and either post in comments or "like" them or (third choice) send me email telling me which ones they are? Thanks. I have to submit 3 - 5 and the guy who runs the creative writing program of the palliative care department in Lebanon will pick the one he thinks I should read. I'll let you know what happens. Thank you again.

Day 117 - tired marrow

Got my labs today: hgb 10.3, plts 59, ANC 600. I think this means my poor marrow is still feeling somewhat battered. I am not sure what else I can do to help pamper it. I am taking vitamins, sleeping 10 hours a night, napping and doing sudoku. Really, what more could my marrow want? I am glad it gets a ten day break until the next chemo. I think we both need it.

In other exciting news, Dr. Hill says I can eat regular food now if I'm careful. Sadly, Terry was sick today so we could not go out to dinner tonight. Maybe tomorrow.

I did some weaving today of a sampler for Ellie's blanket. It was nice to be weaving. I couldn't find the particular shuttles I wanted so I made myself some of out cardboard. When the visiting nurse arrived, I was using a box cutter on a cardboard box. I was being very careful, but all the same, I'm glad she didn't notice. I actually knew her from her time as a nurse at Exeter Hospital back when I used to work there too so that was nice. I only have one more dose of ceftriaxone and then I'll be free and no longer required to be housebound which will also be freeing.

I read an NEJM and a JAMA today. I have been really interested to see how much emphasis has been put recently on the quality of medical/scientific data. There were two articles and an editorial about the problem of missing data in studies. There have been really interesting articles about publication bias and bias in terms of which research is actually done recently to name the ones I can for sure remember. Being able to understand statistics is becoming more and more important in just being a plain old doctor. Geez! I liked statistics in college (in fact it was my lone A+), but I wonder about people who don't.

There was also this really interesting article in this week's JAMA about proneurotensin (secreted stoichiometrically to neurotensin, a 13 amino acid peptide that seems to regulate GI motility and satiety). It is also expressed in human malignant ductal breast tumors and seems to be linked to diabetes and CHD. These researchers in Sweden followed almost 30,000 people for five years and found that by quartile, higher proneurotensin increased the risk of cardiovascular disease (men and women), increased all-cause mortality (men and women) (but not that convincingly IMHO), increased cardiovascular mortality (men and doubled in women from lowest to highest quartile), and breast cancer in women (increase in HR was 2.44). I think we may be hearing more about this neurotensin stuff, although to be fair I also thought we'd be hearing more about ghrelin (what?).

Well, that's all the news for me for today. I hope for continued healing of my good marrow and continued dying of my leukemia for myself. For you, perhaps separation of the wheat from the chaff, too?

Wednesday, October 10, 2012

Day 116 - waiting for labs

Today was another very normal day. I wove a little bit, sudoku'd, crossworded, napped, complained about how sick of the neutropenic diet I am, read another not too exciting NEJM and got my labs drawn by the visiting nurse. I also made a visit to Tommie's apartment and watched the afternoon sun diffuse on the river (I originally wrote shine, but diffuse is more accurate).

I was hopeful that my ANC was high enough that I could get take-out for dinner so I called the lab where my blood had gone and they would not tell me my results or even if my blood was done. They offered to transfer me to the medical records department where they wouldn't give me my results either, but I could fill out a form asking for them and then they'd send them to me in a week or two. I didn't want to call Dr. Hill's office for such a trivial thing as what I might eat for dinner so I am still waiting for my results. Maybe they'll be in by dinner tomorrow.

I've been reading a book of poems collected by Naomi Nye called "What Have You Lost?" She talks in the introduction about how one time she gave that as a writing assignment to a group of rowdy students and they settled right down and wrote for a long time, very engaged. I thought that sounded like a really good assignment for 18 year olds. I read the biographies of the poets in the back and I have been surprised at how many of them say that they feel they have come up ahead in terms of what they have lost and found(?)/gained(?). No one has said that they feel they have come up short, although many have not made a summary statement. Maybe those who feel they've come up short keep it to themselves?

Not much else to report.

For tomorrow, I am still hoping for neutrophils or at least for news of neutrophils. For you, I hope you get the information you need without having to make extra phone calls and without wanting to pull out any remaining hair you have.

Tuesday, October 9, 2012

Day 115 - home still

Today was not very exciting either and I might be a little low energy due to recovering from being hospitalized. The visiting nurse came out and gave me ceftriaxone through my port on my very own couch and that was very nice. I read a less than thrilling NEJM, I napped, I ate three squares and now it's almost bedtime. I'm very happy to be so boring right now. My big news is that Ellie *loves* Heidi's mac 'n' cheese with bacon and that I get my blood drawn tomorrow. I am hopeful that my ANC will be up so I can stop peeling apples and start eating pad thai again.

I am wshing for more neutrophils tomorrow for me. Hopefully, you have enough. For you, we'll wish that your neutrophils never become too numerous or too few.

Monday, October 8, 2012

Day 114 - home, take 2

Yesterday, Kathy, super nurse advocated with Dr. Hill for me to get out Lebanon as long as I didn't have a fever last night. No fever; I'm out of there. Thank you, Kathy! She didn't even work today so she couldn't see me skipping down the halls with joyous abandon. At any rate, just after lunch, Diane came to get me and took me home. It is so nice to be home again, sleeping on my couch, sitting at my table, pestered by my dog. Not content to be just my wheels, Diane's family also made me delicious mac 'n' cheese with bacon which even Ellie liked (!). Thank you, Diane! Thank you, Heidi! Kate stopped by to say hi which was very nice and I feel truly home.

For those curious about the medical details, I am on rocefin to make a two week course which I will be learning to give myself tomorrow through my port. It's only a once a day antibiotic so it shouldn't be too difficult for me. Dr Hill says sometimes acyclovir can suppress bone marrow so I'm off it for a few days. On Wednesday, I'll be getting a set of labs by the Rockingham VNA which hopefully will show my ANC is high enough that I can to out for dinner and we won't need to decide to restart the acyclovir or not because my count will be too high for me to need it. Please hold your thumbs for me for that. We also decided to post-pone the third consolidation (which was due to start on Friday) for about 10 days to the 22'nd. My ANC today for those keeping score was 380 which was almost double the 200 I was stuck at. My poor marrow must just be ready to take offense at anything as it has been so maligned over the past few months.

I am so happy tonight to be in my own bed with my own blankets and my own family here, that I do not even feel a need for a wish for tomorrow for myself. You can have mine tonight. Use it well.

Sunday, October 7, 2012

Day 113 - tortured by her own marrow

So, I guess my marrow is getting back at me for all the poison I've poured into it. My ANC is *still* stuck at 200. Dr. Hill thinks it may be a med side effect and has switched me to the antibiotic (ceftriaxone) I'll be taking at home anyway and stopped zosyn (started to replace ceftaz when I was still spiking fevers and the docs thought--I never thought--that I might have an oral infection). Anyway, I have had another day of no fevers and not much else either.

Fortunately Tommie came to visit me and told me stories about her beautiful new apartment with huge shiny wooden floors and how Ellie slid around and how happily she and Kita explored the nooks and storage areas together. We had a nice time, ate lunch and looked a few photos. She had to leave woefully early as it is a three hour round trip drive.

I also walked some: up a flight of stairs, about a half mile all told, then down two flights of stairs. I was beginning to be aware of working at this point, but not feeling exhausted so I'm getting stronger and more endurant every day. (ok, smarty pants, what is the adjective for "having endurance"? I could have said "stronger and more enduring every day," but that makes me sound like a style of clothing. I suppose "gaining in strength and endurance every day" would be nicely parallel and not misleading, but lacking in panache. Here: endurant: capable of enduring adversity, severity, or hardship from Merriam-Webster, pretty much what I meant.) 

I also read this week's Annals which is surprisingly thin from my POV. There was an "In the Clinic" about contraception which was useful and there was a nice review of what the PCP needs to know about Preexposure Prophylaxis for HIV. There were a bunch of articles about giving patients access to read their medical record, but for me, this is a huge yawn because DHC has been doing that since before I was at DHC. So, Annals writer, doctors don't find it burdensome for patients to have access to their own records? How very interesting, is water still wet?

I did the sudokus for today and caught up with a couple of old crossword puzzles from last septic week. Dr Hill came in and we chatted for a while. My nurse today advocated very well for me this morning with Dr. Hill in puting together a plan to get me home tomorrow. I am very grateful; filled with enduring gratitude. The idea is that if I hadn't had the fevers last week, I'd be sitting at home with an ANC of 200 now so why make me stay here just because my ANC is 200? Maybe it's the antibiotic holding it down so we'll change to the one I'm going home on anyway and watch me for 24 hours and then barring fevers and weird things happening to my cell counts, I get to go home. Thank you, Kathy!

I am grateful for my strong advocate. May you have one when you need one as well.

Saturday, October 6, 2012

Day 107 - sore legs, sore jaw

I mentioned earlier that there is a quite effective treatment for rigors--demerol. Demerol is an opioid like morphine or oxycodone, but has some properties that make it less desirable than the other opioids. It has a tendency to build up half processed medicine that then makes people likely to have seizures. It has to be used carefully so people don't get too much built up. Very early on, I had suggested demerol, but the suggestion was brushed aside, perhaps because I was rigorring constantly and enough demerol to stop the rigors may have been too much or perhaps because a full understanding of the consequences of rigors was not in place. However, around here was the magic day that someone said, "Let's get a demerol order" and it happened. Now, when I started to have a fever and began shaking, I could press my call button and ask for demerol and it would mercifully stop. At this point, I was pretty much of a mess. My jaw hurt more or less constantly and I could not walk without a walker because my legs were so sore. Even a little rigorring hurt my jaw more and my leg muscles which were already complaining about the marathon they'd run the previous four (five?) days, every time they tightened up and began shaking, they also began screaming because they were already so sore. It's interesting that this effect did not happen right away; it was like there were several days to collect the damage then I almost think there may have been a pause like six or ten hours without fever and then when the rigors restarted, they began to hurt.

/* trigger warning for mention of violence */
Rigors are funny because often if you concentrate, you can make them stop, but I can't make the muscle relax; I can just make it stop shaking. This is not all that helpful, but is a start. Anyway, I had had about two doses of demerol over the day and it was so helpful; then I started with yet another fever. Rigor, push the button, demerol, better but not completely better. I was lying there half awake shivering from time to time and Agnes began talking with me. "So, why do you have TMJ?"

"Because I've been beat up on in the past."
"And, you'd have to ask the people who beat up on you for help, right?"
"Yeah, but---"
"What would happen if you asked for help?"
"They'd tell me it didn't hurt; that I had never really felt pain; that I was a very wimpy person to think that was pain; that I didn't need help; that I was stupid for asking."
"Did these people here hurt your jaw?"
"No, but--"
"Are these nice people?"
"Yes. So you think I should ask them for help?"
So, I did. They, very matter of factly, gave me a second dose, I felt better and went to sleep.

In the interest of truth-telling, I have been beat up plenty by "care givers" but actually have TMJ from jaw clenching and tooth grinding (some in response to treatment by "care givers") so what I told Agnes Day was not, strictly speaking, accurate, but is what I told her.

I wonder if I would have been able to get myself to ask for a second dose without Agnes' help. I am not sure. What is known is that being ill, being febrile and one dose of demerol can erase thirty years, three degrees and countless hours of therapy, but one very decrepit, hyper-Catholic, sixteen year old Basset can restore the balance.

Thank you, Agnes. I wish you a long life, for my own benefit as well as yours. For everyone else, may you have people who can nudge you in the direction in your life always.

Day 112 - mean marrow tricks

Today opened with my nurse telling me that my ANC had gone DOWN, not up overnight. It was now 200. These things happen and, it turns out, the doctors were not entirely surprised, but no one had warned me so I sure was! Two days ago we were at 60 and if it had gone 60, 120, 150, 200 I would have been perfectly happy, but because it went higher than 200 and then came down, I was quite disappointed. I keep telling people that I expect tomorrow's ANC to be "G" or a small squirrel because that makes as much sense as it going down this morning.

At any rate, that meant I didn't get to go home today, but Terry and Emily came to visit me so that was nice. We just sat around and chatted and then they took me for a little walk. I used to be able to stride up and down the fifth floor really as many times as I wanted. Now I was able to do half of the usual cycle with a rest in the middle and that was about it. I could have pushed it further, but I don't think pushing myself is a good plan right now. I'm not training for the leukemic olympics anyway.

They went home and I read the Sept 26 JAMA which has a really good article in it on COPD that mentions prominently the importance of palliative care and the full range of treatments for breathlessness. Eva has been getting a lot of push back from primary care docs about using opioids for dyspnea which is actually not at all controversial among those who are up to date. It is nice to have a very recent mainstream journal supporting our POV.

The other article was really interesting except that it felt like it was missing a page. It is about a different way of aggregating clinical trials so that you can make comparisons between two agents that were not necessarily compared in any real trial (Multiple Treatment Comparison meta-analysis). Kind of like meta analyses, but cutting the data differently. It spent all this time in explaining how to tell if the conglomerate studies were valid, coherent, etc. but then I never could figure out how to tell the treatment effect sizes. You may be smarter than me, have better luck with it or maybe have a page my JAMA doesn't. I'd recommend both articles.

A tiny factoid that I realized a couple days ago and again today is how happy I am that I boarded two years ago in Hospice and Palliative Medicine when I had my first chance to board. If I had waited, I would have been scheduled to take the boards Thursday and Friday. I am not sure who would have been easier to convince: Dr. Hill that I needed to go take the test or the board that I couldn't possibly take the test and needed to be allowed to take it with the people who need special accomodations in Nov. I am glad I had to convince neither. I wish I had thought of it in time, but retroactive good luck to all the boarders.

I am really hoping for a big ANC jump tomorrow so I can go home! I am not sure what to hope for you. So, once again, I will hope you get something you have been wishing for for yourself.

Friday, October 5, 2012

Day 106 - unintended consequences

If people were worried yesterday, today was worse, my temperatures were now sliding up towards 103 again. I had been on the correct antibiotic for a full 72 hours and while I was getting better clinically, my temperatures were worsening. All the cultures except the ones before antibiotics were negative, evidence I was on the right antibiotic and it was working, but I was spending more time with a higher fever. At this point, Dr. Lowrey, called in the infectious disease people to help. I felt so terrible that I do not remember much of our first meeting, evidently they asked some questions, explained some things, examined me, made recommendations and left. One of their thoughts was that the vanco might be causing fevers and we could consider stopping it. This was an interesting thought because everyone around me had noticed that at first when I had a fever I could tell, maybe not how high, but at least that I had one, but more recently I would guess that I didn't have a fever and I'd have a big fever like 103. I could still identify the smaller ones. We all thought that was weird but figured there were lots of other more important things to be thinking about like walking and my left ear which still hurt a lot.

Because of all the rigoring I had done, I really set off my TMJ, only on the left for some unknown reason, but that's ok. I also really tired out my muscles and it was hurting to get out of bed and bear weight on my calves and thighs. I could do it at this point, but needed some one to hold on to me because it seemed likely my knees might buckle. This was about when we thought it might be too far for me to walk to the bathroom and got me a commode. When I complained about how humiliating it was, one of the nurses pointed out that I was still wiping myself and I shut up really fast. For the TMJ, we tried amitriptyline which helped a lot with the worst of the pains, but seemed to transform the overall landscape from one of high sudden peaks and long plateus in between to an overall slightly raised plateau. I'm not sure if the area under the curve was the same or less. Because the unexpected stabs when I was trying to fall asleep were really the worst, I stuck with it.

Later that day, we did stop the vanco and I felt that within twelve hours the 103 degree spells that I had no idea I was febrile during disappeared and I felt another 20% better immediately. I think I ate a tuna fish sandwich this day. I was getting worried because high fevers and rigorring are very energetic activities and I had had almost no nutrition since admission. I was pretty sure my body was taking apart all my muscles to run these activities, but when you are asleep, rigoring or sweating up a storm, you do not want to be eating at the same time. If your mouth is moving around and your teeth are chattering, it is hard to stuff the sandwich in it for one thing.

I also discovered a very delicious hospital breakfast for the slightly lactose intolerant. There is, of course, boost and there is probably boost with soy, but I think boost is icky. I really like soy milk, carnation instant breakfast (which has a lot of milk in it but not so much as a glass of milk) and ice blended together. It's quite yummy and fairly good on protein and not so lactosey that it's a problem for my belly.

So, I think I will leave the story here with a couple of promised upcoming events: the inimitable Agnes Day will be making another appearance in the next day or two and the walking gets even worse.

Day 111 - normal hospital normal

Not much to report today: read some NEJMs and JAMAs nothing earth shattering and did a lot of napping. I went outside for a short walk (shorter than around the block even) with Tommie who came to visit me and had no fevers. My ANC was 230 with 500 being the magic number. My platelets and red count are holding so I don't think I'm going to need anything more there.

I ate three squares, got several cards and played sudoku. Very pleasant, very normal, not all that interesting, but please do not take that as a complaint!

I am hoping for an ANC above 500 for tomorrow for me so I can go home. Hopefully your ANC is in place so I am not sure what specifically to hope for for you, but you know: may your dearest hope come true.

Thursday, October 4, 2012

Day 105 - Agnes Day

So, medically the third day I was here was similar to the first two, slightly lower fevers, 102 instead of 103, 104, slight waking up, eating a tiny bit. People were starting to be a little worried because I had been on the correct antibiotic now for 72 hours and was still having big fevers. All my cultures were negative, however, so maybe I was just really good at getting fevers? The other worry, of course, was that there was a second infection we were not treating or that there was a hidden pocket of the first infection somewhere. For now, however, my fevers were definitely down compared to the previous two days, where each day the high temp went down a degree and I was becoming awake and interactive for longer each day so those were both hard to argue with. The day was spent like the others, left, right, left, right, awake a while, left, right.

I'm not sure exactly which night it was that Agnes Day came to visit me, but I'm going to put it here as it was no later than this night.

For people who find other people's dreams tiresome, skip the rest, but I think this is really one of the most interesting things to happen to me in a long time.

I was at friend's house party sitting on a deck with a bunch of other people and this very elderly and beatup basset hound squeezed up on the planking next to me. Her skin was really bad, like she had a collar that had eaten partway into her neck and she had a tumor sticking out the front of her chest. I petted the top of her head as it was the least unappetizing part and said, "Hello. What's your name?"

"Agnes Day."
"What a great name."
"Thanks. I gave it to myself. People have given me other names, but I've been living on my own for 2 years now so I figure I can name myself."
I touched the tumor on her chest, "What's this?"
"I don't know, but it's sure makes it hard to breathe." "So, what's the deal? I've never met a talking dog before."
"O, there are lots of us. We only talk to people we trust. I trust you. In fact, I'd like to live with you." "Well, I don't know about that. My husband wasn't that thrilled about getting the dog we have now."
"I think he'll agree. I mean, I'm 16; I won't live long and all I really want to do is curl up on the corner of your couch--you do have a couch?" I nod. "Good. And I'll eat your other dog's kibble."
"Well, Agnes Day, let's take you to the shelter--""No way! I don't want to go there! I'm not going there! I thought you were a nice person, but I can see--"
"Agnes, the shelter is just where the low cost vets are. They'll help us get you fixed up. We'll take you to the regular vet for regular stuff, but they wouldn't know how to help you now."
lots of OK's mixed with grumbling.
The vet confirmed that she was, in fact, 16 and removed the tumor telling us it was a cholesteatoma and that it might come back but she could remove it again and again. Agnes is much better appearing at this part of the dream and is even cleaned. I don't think there's any more after this.

She appears once later in the week again for a talk with me which I will tell you about when I get there, and once just very briefly where either last night or the night before, she showed up in some other dream and asked me to thank Terry for all the good kibble he was feeding her.

Is this supposed to mean that my spirit animal is a hyper Catholic, decrepit, talking, bassett hound? Don't other people get animals like wolves and eagles? On the other hand, she is charming and polite and kind of funny. And, as you'll see, she gives good advice.

Day 110 - pretty much normal hospital normalcy

Today's big activity was that I took a shower by myself -- sitting down, but without supervision. It felt nice to be cleanish although I can't seem to scrub all the sweat/salt/whatever combination off completely and have some little white patches on a few high spots. I also put on clothes rather than a johnny after my shower so that is exciting and did sudoku for the first time since the half done one left on my computer from Thursday. My life is really pretty dull now: blog, sleep, eat, generally goof around, sleep, eat, etc. One of the volunteers came by as a person (rather than a volunteer as it's not his day) to drop off a book he wanted me to have, "Beautiful Swimmers." I read a few chapters and am enjoying it. It's about the Chesapeake Bay and the crabbing industry. Lots of nice people have called me to check in on me, see how I'm doing, make sure I'm not bored or lonely and I got a get well card from HHH. Thanks, everyone!

My numbers are looking up with an ANC of 60 and platelets of did they say 17? 23? somewhere around there. No more fevers and we're just waiting for that ANC to climb above 500 so I can go home.

I hope your day was as positive as mine and less busy if you don't like visitors or more busy if you do. I'll be happy with a loose replication of today for me, if something similar would suit your tastes, I hope we all get it. If you were hoping for something different, I hope it comes tomorrow.

Day 104 - the misery continues

So, let's describe a day in more detail. I start on one side and whenever I wake, flip to the other side and go back to sleep. The kinds of things that might wake me are LNA's coming in to take vitals, doctors, residents or students rouding, nurses delivering medicine for me to swallow or to hang for infusions, nurses a/o LNA's doing their hourly roundings, any of the various medicines infusing running out or getting air bubbles. Then there was my body's own cycle: comfortable, feeling cold, temperature going up, rigors either a few or a lot until the temperature is where my body was going with it, call the nurse can I have more tylenol? (can't have anything else due to no platelets), when I'm at my body's goal, I go back to sleep, then waken when my body decides it's time to go down with the temperature. At that point I feel hot, sweaty and remove the blankets, then soon I feel cold and start shaking, press the call button and start the cycle again. This was pretty much all I did for three days. I think by Sunday I was starting to have moment that were not devoted to fevers, but I think all of Thursday, Friday and Saturday as well as most of Sunday were pretty much as described above.

Diane came and spent Sunday with me. I think scattered through the whole day we probably managed an hour of conversation. She got me to eat a bowl of soup which was good. Most of the day, however, was spent in rigoring. You may not know what rigoring is: Merriam-Webster calls it "a tremor caused by a chill." This is like a lion is "a cat that weighs under ten pounds and has its eyelids fused shut." For me, rigors involved a rapid shaking of my entire body including my jaw, I can concentrate on making the shaking stop and can sometimes gets one or more limb to stop by thinking about it, but then it will then almost vibrate. I get short of breath and breathe deeply and loudly and exhale against my teeth, my head starts to hurt. That goes on for a while and then stops when my body has decided I am done. This activity--rigoring--was what I did non-stop pretty much for four days. I bet you won't be surprised to learn that I was sore when it all stopped, like I couldn't move myself around in bed sore, couldn't walk by myself sore.  My TMJ on the left only (?) was so bad it could keep me from sleeping.

It turns out there is a med that can keep people from rigoring but too much of it gives you hallucinations and seizures. Those are things I'd like to avoid! On the other hand, rigors are not completely benign. The very people who could benefit most from control of rigors (those of us with constant rigors) are the ones who are at most risk of side effects. I did get demerol starting around Monday and it was so nice, but I wish I had gotten it sooner and possibly had fewer muscle aches and less TMJ. It's a hard balance, but I did not really understand before I had my own experience with it that rigors are not just an annoyance to the patient, that they can have some longer lasting effects.

 I wish those with control over me had understood all the effects of their actions better. I hope those with control over you can see the effects of their actions well and that you are fully aware of those effects on the people you have control over.

Wednesday, October 3, 2012

Day 103 - the horror begins

The day started normally enough at our house: I drove Ellie to school, we jumped in Terry's car and stopped at Starbuck's then proceeded to the Manch NCCC just as we've done a dozen times before. I had felt you may recall as though I were going to get a fever and checked way more than usual--always 99something. At the NCCC, my vitals were fine, they drew my labs and about the time they came back to tell me I needed platelets, I was pretty sure I needed more than platelets. Upon recheck my temperature was 101.4 and we began discussing what to do with me. Dr. Manno really wanted me to stay in Manchester at CMC which makes it easier for the people who love me to see me, but also makes it a lot harder for me to be a patient. For one thing, I know it is very hard for some of the nurses to take care of me when I am in my AML baseline because I am their friend and they're sad to see me without hair, etc. taking care of me sick would be even harder. For another thing, I am somewhat disruptive (not on purpose, but just by virtue of knowing everyone) even though CMC is really good at patient confidentiality. The final issue was that I wanted to be able to whine and complain and wasn't entirely sure I could do that and then go back to work with the same people.

Dr. Manno decided that I could go to Lebanon and that I should wait to get my cultures and antibiotics there. He also thought that transport by Terry's car would be ok. I felt I wanted to get to antibiotics as soon as possible and that meant we should leave right then, but I saw a patient of mine at the elevator and I really did not want to explain to her and her brother in my current state what was going on. So we waited and in the meantime, the nurse got a hold of the doctor up north who wanted me to wait and get cultures and antibiotics in Manchester. Shuffle back to the room. I had just peed to prepare for the drive up north so there was a fair delay of antibiotics while I guzzled water so I could produce for them. Blood cultures were done, my production eventually happened and I got my antibiotics.

Then there was the issue of the platelets (remember those from the beginning of the story?). Well, it turns out that the only two packs of platelets in New England that would match me (or that they thought were likely to match me but they weren't sure yet) were in Dedham, MA. You might remember how with my previous consolidation it went really smoothly and I'd show up likely to need platelets and they'd have them pre-matched and ready to send to Manchester. I am not sure why that happened the first consolidation and not the second, but there you have it. About six hours into this, fevers are starting to come and go and I am starting to feel really lousy, Dr Hill calls and says they'd really like me to get the platelets in Manch if possible (my platelets were 2 and I would not survive a car accident, for example, at that level). He was trying to sort out where my platelets were, if the testing had been done or if we were having a transportation problem or what. Eventually it turned out the platelets were still in Dedham, not quite finished testing so Dr. Hill gave the ok for me to arrive in Lebanon, Dr. Manno agreed that I could go by ambulance and they ordered me up one.

I was feeling weak but ok when they loaded me up. I slept most of the way (foreshadowing: watch for this as a common activity), waking only twice when we changed speeds at interchanges to ask essentially "are we there yet?" When we got here, they wheeled me through the ED which I think must be about 100 acres big and through some back halls I don't recall ever seeing and to my beloved and familiar 1West. Either when I arrived or soon after my temperature did not register on one of the thermometers and was 104.5 on the other. The first night was spent rolling from the left side to the right and then the right to the left. The night float came in and tried to do an H and P on me, but I kept falling asleep on him. Around 9 o'clock they sent me down for the dreaded chest xray and even real tears did not keep them from making me do it, but I was so happy I could just fall apart over having to go down for a chest xray (in retrospect, I am happy. at the time, I just didn't want to do a chest xray.) Too bad: bundled up in the wheelchair, it was not the "coffee enema" transporter, swish swish swish through a million hallways, stand, breathe in, turn, etc. then do it in reverse. I was amazed when I asked that it was only 9 oclock. It felt to me like it had to be at least 3 in the morning. Left, right, left, right. The nigh float came in and told me that they had a partial ID on my bug and it was a "gram positive cocci in chains." He thought that there was some chance that the lab had misidentified the form of bacteria, especially so early on so he was going to add an antibiotic to cover "gram positive cocci in clusters"--vanco. This was probably exactly what I would have done, too. I was actually pretty amazing that my sample started growing something so fast. It meant that I must have had a huge bacterial load or a very fast growing bacteria or both. A few more left, rights and it really was three and I got my platelets and we'll leave Thursday about there.