Day 144 - drat

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

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

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

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

Day 143 - the fever returns?

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

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

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

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

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

Day 142 - who needs platelets anyhow?

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

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

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

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

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

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

Day 141 - Emily leaves

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

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

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

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

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

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

Day 140 - jail threats

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

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

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

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

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

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

Day 139 - surprise french toast

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

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

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

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

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

Day 138 - day? what day?

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

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

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

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

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

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

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

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