Day 18

July 4, 2012 was a fairly low level event for me. I walked a mile with Terry and then 1.5 miles later by myself and took a shower and read and slept. Also, attempted to eat high protein, high fat foods and considered some chocolate, but decided against it. Terry bought me some almond butter so I am going to have almond butter on either graham crackers or lorna doone's later on this evening. I'm supposed to eat fat so I can absorb my anti fungal better and I'm supposed to eat protein to help keep from losing any more muscle mass.

The three things I have lost in Lebanon: hair, muscle and leukemia.

Nice skull shape.

Do you know Zeno's paradox? The idea is that the arrow can never actually hit its target because first it has to go halfway to its target, then it has to go halfway of what is left, then it has to go halfway of what is left and it can never actually get there. The answer to the paradox is that infinite series can have a finite sum, but the reason this is relevant to me today is that each time I wash my hair I lose half of the hair I have left and each time I shower I think there is no way that there is enough hair left for me to be able to lose just half of it. And it keeps happening over and over again.


Today as I walked around the unit it was fun to get to give my news to various staff working at other pods. "Did you hear my news? No leukemia left." They come running up and hug me because, of course, this is the news they do their jobs hoping for. Induction is not over until it's over and the absolute neutrophil count is up to 500, but so far, I have had such a good course. I have had about 24 hours of neutropenic fever and about 24 hours of platelet reaction and about four days of mild nausea. I've needed hardly any blood products (I can't remember if it was 1 or 2 units of red cells and 2 units of platelets that I chewed up and 4 units of platelets that helped out).

Update on the platelets: there is only one unit of platelets left for me in house. I guess the platelets that have been delivered recently have not been appropriate for me. The lab value is 23 now which is fine and maybe my own marrow will start doing its thing soon.

So, it turns out that all I am waiting for now is my own marrow to wake up after its horrible assault with daunarubicin and cytarabine. Dr. Hill (my oncologist) has used the garden metaphor before, that I have poured weed killer all over the garden--everything is dead--that's what the bone marrow showed--and now I am just waiting for the flowers to come back because they're not really dead; they just look dead (the leukemia is not totally dead either; that's why I still have at least four more rounds of chemo ahead, but evidently close enough for now).

Here's the new visualization. Kids, try this at home. The marrow caverns have now been transformed to an open area, a sort of wasteland. It's drizzling. The dirt is bare. Then under one of the little clumps of dirt, a snapdragon starts up. Snapdragons are really wimpy little summer flowers. They do not over winter or seed themselves or anything, but in this garden, this year, they are. It turns out that this is the year of the dragon and that I am a dragon and that my friend Clifton in Michigan had exactly this happen this spring in his garden.

volunteer, over wintered snap dragons, don't they look like platelets should just drip out of their little mouths?

I am going to watch a "Pink Panther" movie in honor of July 4'th. Don't see the connection? Me, neither. I hope your evening is enjoyable and tomorrow, too. Love from the little dragon.

Day 17 - update #2

Tuesday, July 3 starts with some wild eyed speculation. I do not know the results of my biopsy yet and will not until 3 pm.

My nurse came in about fifteen minutes ago and casually says, "I just got orders to draw some bloods on you."
"OK, what are you drawing?"
"HLA testing."
"O, what is that for?" (full disclosure at this point, I am thinking the main reason I know of to draw HLA is if I need a bone marrow transplant.)
"I'm not sure. They just ordered it and didn't mention why."
We talked a little more, but let me summarize the thoughts that were going thru my head: "I need a transplant. My marrow was so bad that they can tell without even having their meeing about it that I need a transplant. It's so bad that they don't want to waste a second trying to find me a match. They need to get going right now on a match for me because maybe my marrow shows really really bad leukemia or maybe the leukemia is gone and they can see that there is breast cancer in the marrow besides the leukemia (and somehow this means I need a transplant). They need to get going now because I am going to be such a difficult match because of the platelet antibodies that there is probably not even a match anywhere in the whole world for me."
Then the nurse says "o, the indication for the lab test is here on the slip "as discussed with blood bank for platelet antibody matching."
O. I guess I don't have breast cancer and leukemia and need a transplant. Deep breath.

This was a very interesting lesson for me. I don't usually spin out of control so fabulously, but somehow the idea of a bone marrow transplant has me totally freaked out. Clearly.
So, class today's lesson is on informing the patient about what you are doing to her and why. Speaking about in-patient care, I can't enter labs in the computer for patients. I either have to go to the floor and enter them in the chart at which point I may as well pop my head in the patient's room and tell them what I'm doing and why or I call the nurses and give them a "verbal order" and I try-I intend-to always tell them what to tell the patient about why I'm doing the test. Again, Universe, I understood that that was important already. Maybe not 100% understood but did I really need the experiential learning component? How about if I just do an extra paper about the topic--a really short one? O, I guess I already did.
The after thought is that I wonder if this problem will get better or worse now that orders can just appear at any moment on the computer without any human interaction required with the nurse. The computer will not let you enter an order without an indication, but it will also not check if the indication has any real meaning.
------------
update #1
The first piece of info is back on my marrow and that is the flow cytometry. There are still about four or five more pieces of inforation to come. The first (the flow) says "no leukemia."
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update # 2
NO LEUKEMIA!! EMPTY MARROW! Yeah!!!

Day 16

Monday, July 2, was a very nice day. The bone marrow went fine. I had a couple of really long conversations with friends via phone, took a shower, spent the afternoon with my friend Ana and then as I was settling down to update my blog, the nurse came in and said, "they've ordered platelets for you for tonight as a precaution since you had your bone marrow today. Here's your benadryl." I had only enough time to care for my mucous membranes and take off my glasses before I was in a med infused sleep. There is no help for it; it lasts 6 or 7 hours and then I am awake for a few hours. That is all there is to it. So, had I known what was planned I would have done my day differently so that you could be updated sooner. I am sorry.

well, how good did you think I'd look at 0430! My scalp shows through my hair now.

The bone marrow went absolutely perfectly. I would let him do another one (which is about the highest compliment there is about bone marrows). Some parts hurt more than when Dr Manno did it in Manch, some hurt less. I am beginning to get a sense for which parts are just random and which are operator controlled. Sadly, the worst of the pain, when they remove the samples is totally random as far as I can see. Part of why it's so painful is just how bizarre it is, the pain radiating around inside the bone, down the leg. It's just not something I've felt before. I've almost gotten over how weird the "pop!" when the stylette (or whatever it's called) breaks through the cortex of the bone. The first one was "dry" so he had to do it twice so now I'm a real expert.

Results come at 3 pm today. The hoped for result is empty empty empty. If not, they have their ways. This round of chemo gave me a rash and made my hair fall off. I think the next round makes my rash fall off and gives me hair in my ears. Just kidding!

BTW, my rash is really kind of dull now that I am no longer oozing blood into it constantly onacounta having platelets. I'll try to remember to put a picture beneath the fold.

Ana and I had a good time; we walked maybe two miles. I found more halls I can go down that double my usual length so that is nice. She told me lots of funny stories about growing up in Redding, MA and brought me a box of 100 colored pencils and some coloring books: one a nature one that includes some things I can see out my window and one a "stained glass" mandala book. Both will also be fun with Ellie.

I did want to mention that usually when I put a "thought" up, it's a stretching/bending/distillation of
something or maybe two somethings that has happened or almost happened usually in the past few days. When I talk about an actual event, like I got chocolates delivered through the interoffice mail! from Tricia and Maryanne (thank you!) it happened when I said it happened--yesterday morning.

Today is planned to be a dull day. Sadly, I think I may get blood and because I have such vigilant little lymphocytes, I think the plan will be for more benadryl today during the day. Posting may be late and light which can sound the same if you are from some parts of the country.

Day 15

So, here's some really good news! I did not have any antibodies against last night's platelets and my platelets are 25 this morning. The first two bags they gave me I had lots of antibodies to and developed rigors and probably got no utility at all out of them. The second two bags I had no antibodies in the lab, but something was going on because my body chewed through them within an hour so I got only a transient bit of benefit from them (which I did for sure get, because my rash lightened and some nuisance bleeding that I haven't really talked about slowed down). But this bag was perfect and my body did not destroy those platelets so they will live their natural lifespan (which sadly is like 6 days:*) and circulate around happily stopping bleeding where ever they may find it. I wish I could write a thank you note to the donor, I am that grateful!

Also, my hair has hung in there, so Ellie and I will have a hair cutting event today--more good news.

Have a great Sunday, everyone, and thank you for your love and support!

What do you think? Does Ellie have a career in hair cutting?

 Terry and Ellie came and we had a fun visit. Ellie is a hoot rearranging the bed up and down and making it a chair, making it tip back, riding it up and down. We played pictionary and it was very fun. At Jill's suggestion, I bought a set of bananagrams and they will be delivered for next weekend. Here is the picture Ellie made for my white board:

Everyone loves my magnets and almost all my visitors do something to them at some point.


(trigger warning for violence, domestic violence, general acknowledgement of death)
So, shall we return to the doctor/patient relationship? Today, we're going to talk about reassurance. Sometimes I feel like my whole job with my primary care patients is just to hold their worries for them so that they can get on with their life. They're afraid sometimes of medical things that I can help them figure out, but often they're things I have no sway over: they're afraid for their kids in Iraq; they're afraid their husband is going to leave them or lock them in their house; they're afraid they have hep C or HIV because they were kind of wild in their 20's. My job in these cases and I can see that it is tremendously therapeutic for people at times is just to accept the worry. Sometimes I can help by offering hep C testing or my wishes for a safe return, sometimes there is really nothing I can do but explore it, agree that it is scarey and hold onto it for the person. It can be one of the most powerful things about being a primary care doctor and having a relationship with some one. Especially if in a few years, the worry I was holding has faded away and a new one has come up. It can be very moving to know some one well enough to say, well, remember that bad chest xray stuff and how you got through it? What did you learn from that that we can re-use? I think people find this sort of thing really helpful and I think it's an important piece of primary care (part doctor, part therapist, part cheerleader--that's me).

There are ways in which reassurance can be used to weaken the doctor patient relationship too. There is this idea of premature reassurance, which is not reassurance at all and which can be quite damaging. This was a new discovery for me--I mean I've read about it before. Premature reassurance is when the patient says, "I'm scared that I am going to feel traumatized by that procedure" and the doc says "Don't worry; I've done this lots of times; it's going to be fine." Or "I'm afraid that hospice was a bad choice for me." "Don't worry; it will be fine; we'll keep you very comfortable." The insidious thing about it is that it can be done by really nice, really well meaning people who are in a hurry or not quite feeling up to hearing about someone's trauma or who genuinely believe that that will be enough reassurance (which it might have been if the fear were explored first) or who are just not having the world's most sensitive day. I bet I have done it in the past. I am sorry.
(end trigger warning)

There are so many bad things about premature reassurance: that it can be done by people who are careless rather than jerks, that after the patient has made themselves vulnerable to say "I'm afraid" they get their fear minimized and themselves minimized; no reassurance is provided, but that patient is never going to ask for it again; an opportunity to build and strengthen a relationship is lost and instead the relationship is weakened.

In most settings that I practice in, there is enough time to explore the issues, but in the ED or the ICU, there might not be. I have made it a practice since residency when taking care of some one who I think is about to lose consciousness to say "you're doing a great job" and "we're going to take good care of you" while I strongly grip their shoulder and look into their eyes. People tell me from time to time that it has been very helpful to them and no one has complained about it. So, I guess it doesn't end up feeling like premature reassurance to people, but I worry a bit. I think it is also possible that people in the ED or ICU who don't have time to "explore" their issues don't come up with the sort of issues that need exploration. In those cases, maybe the "I've done this hundreds of times before and it's going to be ok" response is alright and not premature.

In fact, maybe that is the whole thing with premature reassurance is a mismatch between the amount of exploration the patient needs of their issues and the amount the doctor is willing to do. In the ED, it really might not be an issue because all a person who can't breathe wants to hear is that you will fix it. In the clinic, many people want a more nuanced message that starts with "I want to hear your concerns. In fact, I'm going to bother to actually find out what those concerns are."

Perhaps it's a different face of engagement.

This whole patient thing is really really eye opening and from the vantage of a few years out, I will be grateful? appreciative? no longer wishing I could just read some extra about the doctor patient relationship and skip the experiential time? I mean, I really think a gangrenous gall bladder would have been enough to get the points across.

Wishing you a restful Sunday and safe travels this holiday week.

*editted to correct. turns out platelets have a much longer half life than I thought so go, little platelets. It also turns out that I need more board prep in basic hematology than I might have thoughts (ahem).

Day 14

Today was a lovely quiet day. I caught up on some misc paperwork kind of stuff I'd been putting off for a while. (Feels good to have that done.) Debbie and Ira came to visit me which was a nice treat. I had not met Ira before. He seems very nice, treated Debbie as though he realizes what a prize she is, and altogether I approved.

Other than that I did the sudoku, enjoyed my platelets, got a unit of blood and a unit of platelets without complication and discovered that they make a really delicious veggie burger here. A winner of a summer Saturday--all that is missing is a trip to the beach; I had to make do with a shower.

My hair is starting to come out really quickly now. I am hopeful that enough stays in til tomorrow that I look like my normal self when Ellie gets here and she can help buzz me down so it's not such a dramatic change for her 10 year old brain.

Update on addressing the leukemia: It's kind of like addressing the pig that gave me bacon for my breakfast sandwch. "Dear leukemia, thank you for dying so that I might live." It sounds really sappy written out, but doesn't feel sappy when I say it, even aloud as I did to Debbie and Ira today.

Tomorrow Terry and Ellie are coming to visit. Monday I am getting my first post treatment bone marrow biopsy. I'll get the results on Tuesday afternoon. The hoped for response is that there is nothing apparent in my bone marrow. That all that goop and slime that I see in my marrow cave reflects the death and destruction that has filled my marrow cavity. Please continue to do all the good things you have been doing on my behalf in hopes of an empty marrow Tuesday afternoon. I remain tremendously appreciative as always. Thank you.

see how thick the part is getting? I just swiped two more hairs off my keyboard too.

The harvest from one "comb" of my hair with my fingers.

The good thing is that what the chemo has done to my hair, hopefully it has done in capital letters to my leukemia!

Day 13

Newsflash! My immune system is not a team player. Despite being too weakened to fight off any actual threat to my health, it is perfectly able to attack any infused platelets vigorously. Last night, my platelets were 8 and I had a fever so they attempted to give me an infusion and about half way into it, I began shaking all over and feeling short of breath. If I really concentrated, I could make the shaking less or maybe even make one limb stop, but then if I moved anything voluntarily, it would start up again. Because I could partially control it, I thought perhaps it was psychiatric and was really a panic attack. Or maybe it was a conversion reaction. Maybe I was just plain crazy. All of these really horrible, mean thoughts that I would never think about any of my patients. At any rate, they got it under control with benadryl and demerol, stopped the platelets and I woke several hours later in exactly the same position I had gone to sleep in--I am what you might call a lightweight. They sent off "transfusion reaction" labs and initially they were read as normal--not a transfusion reaction.

A few hours later, my platelets were 2 so they gave me another transfusion. This time, they pre-medicated me with benadryl and I got through the transfusion, but then had a similar episode of rigors, complete with desaturation into the 80's, pulse in the 130's and SBP 40 points higher than usual. Loves me some demerol; it works in maybe 2 or 3 minutes for rigors.

The docs came in and said that it was a transfusion reaction both times and that both times my platelets got no improvement at all from the infusion. The first plan was to collect more of my blood and try it out with all the units of platelets they had and see if they had any that might work. It turns out that there are 14 units of platelets in the hospital and my blood does not seem to have anti-bodies to 5 of them. They've set those aside for me. I'm getting one of them in a few minutes, having just taken my benadryl and tylenol. They do have a plan C and a plan D if needed and they tell me that they have seen people with 0 platelets for 3 weeks do just fine (that's plan D). In the meantime, I am developing lots of purple spots. Fortunately, not my face and only a few on my hands.

Also, because rigors and one whole body bruise aren't enough indignities for one day, my hair has chosen today to start falling out.

more to follow.

Day 12

Yesterday was such a fun day! today I didn't do so much because I wore myself out a little bit. When your hemoglobin is 7.5, there is only so much excitement you can handle. In fact, I have to limit myself to one exclamation point per paragraph or I start to get short of breath.

I had a visit from the oncologist who did my bone marrow in Manch. It was nice to see him. I hadn't really seen him since he gave me the diagnosis and said very sternly that I needed to go to Lebanon. So here I am and a lot lot lot has happened since the last time I laid eyes on him. Interestingly, he has two other patients with AML from Manch, recently diagnosed. This would be a little cluster of disease. My theory about my leukemia is that whatever virus I had in March is the virus that integrated itself into a bad place in one white blood cell's DNA and set off the whole process. I imagine (because I have a good imagination) that the other two AML'ers got the same virus with the same effect. When I suggested this to Dr. Mannot, he said he didn't think the timing was exactly right, but, very graciously, that it was an interesting idea.

Emily and I got to watch a newly hatched (what I call) fish fly (she gave me the real name, but I am chemo brain) harden up on my fabulous picture window today. It was all white initially, then started developing some brown areas and spots and moving more and after a few hours, when the sun hit it, off it went. Tommie got a close up view of a Luna moth last week in the cafeteria window. It's been really nice to feel a little connected to the natural world even though I am in the most artificial environment I have ever been in. I am absolutely positive I have never spent 12 days without going outside before in my life.

Also, my friend Barbara from Home Health and Hospice came to visit me today which was lovely. We went for a little stroll, 0.77 miles according to run keeper and then I got an email from run keeper saying I had a new personal record! Most miles walked in a month. I also got a fabulous massage and am working on (not) getting a fever right now. I'm at like 100.4/100.5. Down, down, down.

Have you seen my rash? I thought not. It's just a run of the mill rash from my chemo, but I think it's kind of impressive looking. I'm going to try to figure out how to put the picture after jump in case you are not interested in seeing a picture of a) my stomach b) my icky rash c) both.