Day 21

July 7, 2012 was a good day to be an extrovert in room 113. I had visits from Stephanie before she headed south to see the rest of my family, Tommie before she headed south to see the rest of my family and Barbara and Gary on their way north for a family reunion. It was very nice to have all these visitors in various combinations, sort of like a little party in my room.

Tommie and I went for a 1.5 mile walk today and I am tired now (still), with dashes between each of the letters. T-i-r-e-d. I had post lunch and pre dinner naps which helped. I am hopeful that I am so tired because my bone marrow is revving up and stealing all the energy from elsewhere in my body. Sounds good, doesn't it?

I did a little board review, read JAMA from June 6 which has a really interesting article on aspirin for primary and secondary prevention of vascular events traded off against bleeding events and hung out with company today. I think I may watch some Daria this evening or maybe another "Pink Panther." I wonder what it says about me that one of my favorite movies was made the year I was born?

The halo effect of my hair. Not much left.

Since there's no news to tell you, I'll tell you a couple funny stories that are similar in that the protagonist has a completely different world view than the person they are speaking with. The first happened to me. I told my nurse a week or so ago, expecting sympathy that I felt like it was my full time job to care for my mucous membranes. She said, "that's right." My resident who is 7 months pregnant with twins was hiking with her husband last weekend and he said, "Wow, it's going to be a lot harder to go hiking when we have to carry those babies after they are born." She said she has told that story to several women who all "get it" instantly and a few men who do, but mostly when she tells it to men, they sort of look at her like "what's your point?"

The final little tidbit I'll toss in today since it seems to be a very q-word day (is it bad luck if the patient says it? I don't know; not willing to risk it) is about probabilities. OK, so remember back to seventh grade math when you figured out the chances of throwing five heads in a row? one half x one half x one half x one half x one half = 1/32 = (one half) to the fifth power = 0.5**5.

So, I have this idea that on any given day, my chances of not getting an infection are very high, like 99.5%. But what determines how successful this hospitalization is is whether or not I can string 28 days in a row without infection (I picked 28 as my estimated length of stay).  My probability on each day of not getting an infection is 0.995; two days in a row is 0.995*0.995; three days in a row is 0.995*0.995*0.995 = 0.995**3. If you play it out for 28 days, that is (0.995)**28.  which is about 86.9%. If I obsessively clean things in my room (which I do) and that decreases my chance of getting some infection by one quarter of one percent to 99.75%, I've raised my chances of an infection free stay to 93%. That, ladies and gentlemen, is the magic of compounding.

Day 20

July 6, 2012 was another relaxing and fun day. Emily left this morning after a really nice visit.

Isn't she cute? Me, I'm almost bald. We had to re-arrange the medical equipment because at first it looked like my IV was an enormous earring.

I had another surprise long distance visitor today. I knew Stephanie was coming at some point, but was quite thrilled and surprised to hear her voice at 3:30 this afternoon. Shortly afterwards Tommie who I was expecting to come today arrived and the three of us sat around and chatted and then went for a second mile walk. I was (and am) tired.

My platelets were 3 this morning and it turns out there are no platelets for me in all of New England now; my stupid lymphocytes are such picky little connoisseurs. My platelets are coming from "the south of the east" according to the message relayed me by my nurse. They were in Boston at 4 and should be here soon. I'm not sure where the south of the east is: Baltimore? North Carolina? Florida? At any rate, my attending, Dr Gautier, called the Red Cross to ask them when my blood was coming and they told him, "It will be there when it gets there, your nurse has already called twice today."

I am an extremely appreciative person for whoever's platelets are coming my way. I just hope my own marrow gets popping those snap dragons soon.

I hope you have a great weekend and, hey! please consider donating platelets or regular blood. I bet I'm not the only leukemic with hard to please lymphocytes.

Day 19

July 5, 2012 was a largely uneventful day medically speaking. I got a unit of platelets for a platelet count of 2 and they drew two tubes to send to the Red Cross for further testing so they can send me some platelets. Please, sir, just a bag more. I did "stand up" for myself today which I don't do often and with good results so that was exciting (more below), but even more exciting was that Emily came and spent most of the day with me.

First my friend, Eric, made a surprise visit. I thought he was in West Virginia, but he just showed up at my door for a lovely unexpected visit. Then Emily came and we chatted, walked the halls (but I got tired after one mile--did 2.5 yesterday) and did three of this week's NYT puzzles. For the record, we *loved* Thursday's. Not everyone did, according to the website, but we thought it was astonishingly clever and well executed. Dr. Hill (my onc) came in and chatted with us for a while at bed time. He and his family are going to MI for a two week vacation so I gave him my opinion on the tourist spots of MI that are worth seeing (or not). The family I grew up with had a lot of relatives in Europe who would come for extended visits in the 70's and sometimes 80's so I've seen most of MI's tourist sites multiple times. I don't know if they still do the Ford factory tour, but the rest of the recommended list is: Greenfield Village/Henry Ford Museum, Mackinac Island, Petoskey Beach, Sleeping Bear Sand Dunes and if you find urban decay interesting and have a car in excellent working shape, a drive down 7 mile road in Detroit. Dr. Hill, Emily and I talked about what I can and can't do after my counts are around 500 and the answer is I can do almost everything I did before. My PICC will be out so I can swim in the ocean. I can eat or drink almost anything I want. I can go to the pedicurist. I can do the York 5K if I feel up to it. When my counts are above 1000, I can go to the dentist. O boy!

Now, to me standing up for myself. It's really very minor, but I am pleased I did it. I had had my labs checked twice yesterday b/c I got the platelet transfusion and my hemoglobin was 7.4 and then 7. They usually transfuse below 7. I had been unusually unable to do my walk with Emily and even after sitting around for several hours, still felt my knees and the big muscles in my hips were tired. I thought "I bet my hemoglobin has dropped well below 7 now; that is probably why I feel so cruddy." Emily also pointed out that I was remarkably pale. I asked for a set of labs and the nurse called the night float who came in and explained why I didn't need a set of labs drawn because I had just had them done 6 hours before and was due in 8 hours and I'd be fine. I listened and the conversation had gotten to that place where she was about to leave and I almost let her, but then I remade my case and added at the end, "I never complain about symptoms and I'm weak and short of breath. I really would like a set of labs checked." She checked my labs: 6.4. I got my unit and feel great this morning. I am a little proud of myself.

It's remarkable, however, she is twenty years my junior in life and eight years my junior in medicine. I am board certified. She is not even board eligible. Yet I really felt by virtue of being a) the patient b) myself that I had to really had to work to get what I felt I needed. What if I were not a doctor, but instead a semi-literate medical office cleaner or what if I were myself, but pre- all the therapy I've done. I would have woken this morning with a hemoglobin of 5.6. I could imagine myself, sitting at the side of my bed, feeling light headed and a little short of breath, but really having to go to the bathroom. It's easy to see how little things can go wrong in these incredibly complex care systems we have set up and lead to bigger and bigger problems.

I want to be clear; I think the night float was doing her best. I think she was trying to save me unnecessary blood draws; save her system unnecessary cost; she may have been a little afraid of transfusing me because I have had such dramatic platelet reactions and she may have thought I'd have a red cell reaction and she felt more comfortable managing my anemia than my transfusion reaction. Additionally, when I was a resident, I remember there was a certain pleasure we all got from doing the most parsimonious investigation possible. In fact, one of the nicest compliments I have ever gotten medically speaking was when Dick Knab (dear Dick, may he rest in peace) told me that my investigation of someone's abdominal pain was the most elegant he had seen in years. On the other hand, had she let me sit here with a slowly drifting downward hemoglobin, it is easy to imagine bad consequences.

Anyway, thank you, all my dear therapists, who have helped me develop the tools to stand up for myself and thank you, all my dear friends, whose imagined reactions if "something bad" had happened to me helped motivate me to speak up.

Happiest of Fridays to you all and speak up!

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."
---------
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).