Day 28 updated

I get to go home today! I get to go home today! They're going to take out my PICC; I'm about 60% packed; I get to take a post PICC shower; then all I have to do is wait for my family to mosey on up and spring me! Did I mention I'm going home today?

Currently, the whole plan as far as I know it is that I will see my local oncologist next week in case I need more blood, see my Lebanon oncologist the next week to plan out the whole course and (I think) get another bone marrow biopsy. Then assuming there are no surprises in the biopsy, 5 days of chemo in early August and then about every month for 5 months. 

In the meantime, I plan (imagine) that I'll keep this up, although when things are calmer, it may be less than daily. 

Thank you to everyone who has been out there supporting me, rooting for me, sending me sweet or funny cards, healing prayers and thoughts as well as phone calls, emails, visits, etc. I don't know if I could have done it without your help or not, but I am very grateful that I didn't have to find out. 

Thank you.

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update #1

Don't I look good at home?

I'm home. It's nice. The world is surprisingly loud and chaotic. I went for a little walk with my family and we saw a dragonfly swarm. Then when we got home, there was another one in our front yard and my sister in law got out her net. I wondered what we looked like to the people who drove by, a lady with a dragonfly net and a bald lady. From up close, we looked happy. 

Day 27 with an update

Good morning! Today's number is 760 which means I get to go home tomorrow (God willing and the creek don't rise). It's very funny after being here in this alternate universe for so long, to start saying goodbye to people. I'm going back to my real universe now. I've been saying thanks and I'll see you in a few weeks to people for a few days now; they're going on a two week vacation, in all likelihood I'll be home by the time they come back, but now it's everyone practically. My intern has tomorrow off, so I will not be seeing her potentially ever unless she makes an effort to come see me during one of my consolidation chemos. It's very weird to be on the receiving end of this, after all the patients I have re-launched into the world.

One thing that is incredible to me is how many questions I have. I recognize them as kind of dopey--there's all this specific do and don't eat this for the neutropenic diet (and I'm not even neutropenic anymore!) and I was lying in bed this morning thinking, ok, what does my count have to be to eat peaches? what about raspberries? what if I freeze them before I eat them? How healed does my PICC site have to be before I can stick my arm in the ocean? When do I go for blood work? which med will I go home on? etc. I think it's all an expression of the discontinuity between my safe little life here where everything is decided and packaged for me and all I have to do is cooperate and put up with things and the big scarey real world. It's been nice being almost a juvenile again, just bobbing along, not really responsible for much: walking, eating, cooperating, telling them when it hurts, "o, you brought me a bag of something to put in my vein! How lovely." Now, much of the whole dizzying array of the world will be available to me again. I can see the appeal of being cloistered.

More isn't always better. Me, you, appealing, scarey, overwhelming. The world looks surprisingly different after being out only one month

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update #1
(warning--may be TMI for some who are uninterested in bodily functions)
My colon has never been my strongest organ, but has decided to complain about chemo followed by three weeks of antibiotics by refusing to digest even cooked milk any more. I wish I had known that before I had a bowl of clam chowder for lunch yesterday. When this happens, there is nothing to do but wait and when one is waiting, it is really best to just sleep. So, they gave me benadryl at 3pm to go with a blood transfusion and I woke at 6, said "Wow, this is uncomfortable" and went essentially back to sleep til the morning, with a brief round of complaining to my nurse in the middle. Not the funnest last night in the hospital one could imagine, but I guess if they only wanted fun patients, they would run a clown hospital.

I was awake long enough to note that there was a 200 ant or so infestation in my bathroom at one point. I didn't really wake up when the maintenance people came through with ant traps or to check on ant traps or, evidently, to put in more ant traps. Hopefully, none of the ants think the SeaCoast would be a better option than the mountains. There are, like, 28 oncology rooms. Guess how many got ants? Clearly, I'm kinda special.

Day 26 with an update

All I have to say right now is 150. (well, and a short paragraph below.)

I am thinking the day after tomorrow will be 500+, but we'll see. Things are clearly waking up in the marrow caverns/garden. When I came in, my ANC was about 200, so this is very good progress. My platelets are 330, my hemoglobin is 7.9 and my WBC is 2.1. My platelets are for sure and I think my WBC may be also higher than when I came in. The only thing lower? my blast count. (Blasts are leukemia cells that are circulating--I had 5-10% when I came in and 0 now. This is the best news of all.)

----update #1
I had a very pleasant day today. Emily came and did the crossword puzzles from this week with me and hung out for a few hours. Then my friends Natacha and Mike came by for a while. We chatted, they brought me a book on CD to listen to while I walk and then we walked 1.5 miles. For those of you who haven't been able to see me in person, Mike says I look a ton better than my photos make me look. He said he felt very reassured at seeing how strong and healthy looking I was.

I had a great day today and am going to bed tired, not fatigued, but tired. I'm so excited. I think this means things are getting more and more normal. It is looking like Sat or Sun for me to go home. I'm starting to think about packing.

Stronk, like bull.

I am going to bed now and hope your heart's desires feel as close as mine do right now.

Day 25 with an update

Today started out for some reason as a horrible day. I felt like all I could do this morning was whine and complain and found myself thinking "maybe I could just get some ativan and wake up 12 hours from now, not having had to deal with today." Of course, this is not a very typical kind of day for me and I'm not sure why I felt that way this morning. Possibly because my ANC is still at 10. Dr. Gautier said he thought I'd be out by Friday, but it's not looking like that. That may also be part of why I was feeling a little whiney and down. OK, a lot whiney and down.

Fortunately, rather than return to bed for a second nap (which I considered), I decided to flesh out the AML chutes and ladders game that has been in my head. Wanna see it?

I thought you did.

Right now I'm in the little green part that goes around and around, waiting for permission to go to the > 500 < . In retrospect, I should have made that section blue instead of green since I am feeling somewhat blue, but perhaps I am saving the blue section for some other part of the trip--there may be a more blue section in the fture. The colored pencils were from Ana (thanks!) who didn't know what I would find to do with 100 different colored pencils. I haven't used all of them yet. I tried to make some parts as ugly as I could "NOT EMPTY" in particular. The little things that look like wadded up kleenex are supposed to be leukemic white cells. I'm not sure how bone marrow transplant "BMT" fits into the whole thing, but I know it's like a big black whole sucking any potential path in.

--------update #1
It turns out that colored pencils and an idea I want to express were the perfect antidote for what promised to be a cruddy day. It really turned right around.

I got distracted about twenty times today and never got to finish so here's the end of the post just before I go to bed.
platelets 191, hgb 7.6 ANC 10, WBC 1.2.
I keep trying to tell myself that it's really ok that my platelets have come back first instead of my ANC because the platelets are what has been so hard for me to get. Their purpose in my body is to keep me from bleeding. In general, it doesn't matter if I bleed some, but there are a few key places that I really really really don't want to bleed. Exhibit A: inside my brain. Exhibit B: between my brain and my skull. Exhibit C: inside my spinal cord. The results of bleeding in any of those places would be catastrophic and platelets of 191 makes that extremely unlikely regardless of the rest of my crazy labs so it's really a good thing. I am hoping for ANC now, however, because that is what determines when I can go home. 500 is the magic number. It's not like it goes, 10, 20, 30, 40 each day up by 10 which is good b/c then I'd be planning on discharging for Thanksgiving. They say once it starts up, it goes really fast like 50, 130, 300, 520. O, ANC stands for absolute neutrophil count. Neutrophils are the kind of white blood cells that do things like protect you from infection by bacteria or fungus so they're kind of a big deal.

I walked 1.5 miles today including a visit to Au Bon Pain for a hot chocolate. Because Dartmouth is trying to help everyone lose weight, even those of us who really need to work hard to keep the weight we have, there are no sugar beverages to be had at any of the restaurants. Want hot chocolate? Bring your own powder. So, I did. I also included a down flight of stairs in my trip. My first stairs in 26 days. They felt OK.

With a hemoglobin of 7.6, walking 1.5 miles with 19 minutes miles is obviously a different level of cardio exertion than if one's hemoglobin was 14 (ah, those golden days!). It seems like it would be analogous to an athlete suddenly going to 10,000 feet and doing their sport.  I wonder if there is any sort of equation that tells you what contribution your anemia has made to the level of exercise you are getting.  I don't really know any exercise physiologists, but if you do, please ask them and let me know!

I didn't have any visitor visitors today; really just official visitors: a palliative care volunteer chatter who I enjoyed, a massage therapist and a chat with the palliative care writing coordinator. It is actually nice to have a day every week or so without visitors.

I am going to go to well earned bed tonight. I hope you enjoy your slumbers and your head is filled with interesting questions for tomorrow.

See, half again as much hair. Pretty soon, I'll be finding half a hair in the sink!

Day 24

I wanted to share these pictures with you because they are so beautiful. I don't have any actual leukemia or Mary news for the day yet, but do have a little leftover news from yesterday.

Clifton sent this to me to celebrate his birthday. This cherry tree was hit by lightening two years ago and everyone said to cut it down. He didn't; it's doing fine and on his birthday evening it had a rainbow focused on it.

Where the red cells come from--see you can almost see some floating out in the background

So, yesterday during reiki, I realized that I had been visualizing the wrong thing for my white blood cells. I had been visualizing that platelets and white blood cells came from white snap dragons and red cells came from red snap dragons, but it seemed very clear that platelets come from white snap dragons, red blood cells from red snap dragons and white blood cells from light yellow roses. It is just fascinating to me to see what my unconscious mind comes up with. Light yellow roses? why? BUT...perhaps now that I am visualizing them coming from the correct source, now they will start rising. I'll let you know!
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update with actual news
So, my numbers today are great: platelets 105 (at least two people have said today that I could be a platelet donor soon--which actually makes me wonder if I could stockpile my own platelets?), hgb 6.9, ANC 10. Got a unit of red cells today and feel much perkier.

Today was the busiest day ever for me. Terry, Ellie and Emily all came by and took turns with me. I hadn't had my transfusion yet b/c it comes with benadryl and I didn't want to snooze away my visit. Stefan came by to say hi and John my third year resident friend had a "no show" day in clinic so he came by to say chat. I had a massage in the morning and a unit of red cells in the afternoon/evening both resulting in increased perkiness and then my first writing group in the evening. It was fun and interesting, but did not mess with my level of perkiness.

One of the prompts in writing group was anger and I was thinking about how anger has not been a big part of my response to having AML. I started thinking about my psyche as being fairly practical. People often tell me I have a good attitude and I think what they are noticing is that I didn't spend a whole lot of time in the anger/bargaining/grief phases but went straight from denial (where I comfortably lived full time for the first three days and still visit from time to time perhaps) to meaning making. Part of this has got to be the result of all the people I have watched go through tough times and seeing what is useful and what ends up making them spin their wheels. I really like the image of being sick acting like a fire in my psyche, burning away all the useless stuff lying around, leaving me the purified metals without junk hanging off of them, cluttering the place up.

An interesting piece of trivia about today is that it is the first day I found myself wishing I could go outside. Other days I would have been happy to go outside, but was just as happy to stay in. Tonight I was thinking, "I'd like to go for a little stroll in the twilight around the hospital"--like kind of longing for it. I'll wait, but I think it all points to I'm getting better! I'm gonna get out of here soon!

Another interesting piece of trivia: the Red Cross has already talked to the few platelet donors whose platelets agree with my grumbly little lymphocytes about when I'm getting chemo and when I'm likely to need platelet support. Isn't that cool! There are some donors in New England for me because they found five units I could tolerate initially; they just ran out of them and then couldn't find any more between here and Georgia. I am imagining my donors in rural Mass or suburban NH or maybe VT or ME, drinking their morning coffee, thinking about me getting their platelets and thinking about me thinking about them. I wonder what started them giving platelets? I wonder how it feels knowing there is a person out there somewhere that you have never met who is relying--whose family and friends are relying--on you and your generosity and knowing you are connected so firmly to them and yet not knowing the first thing about them. Well, whoever you are, for now my marrow is making platelets and I'm good, but in three and a half weeks or so, you'll be saving the day for me again. See you then and thanks.

I'm going to go for my red cell infused walk and then to eat bananas so that I stay off my potassium pill (most disgusting pill evah) and then to bed, grateful, well loved and swathed in artificial immune system. I hope the same for you (except without the artificial immune system part).

Day 23

OK, everybody, sit down for this news! My platelets are now at 53! And--they're mostly mine, not those southern accented imposters (who I am very grateful to, but still there's no platelet like one's own platelet). This means my little snap dragons are spewing out the blood elements. My ANC is still 0 with a total white count of 0.7 and my hemoglobin is holding at 7.5. But--today--platelets, tomorrow--who knows? I am hopeful that this means I'll be home for next Monday.

Mary: first native blood, coming soon to a house in Exeter.

So here's that lesson in well informed patients that I promised earlier today. Three weeks in a row I have had my PICC dressing changed (my PICC is my semi-permanent IV that hands out of my arm and gets blood drawn and things infused). Three weeks in a row, I have felt like my PICC hurts more after the dressing change and been worried that my PICC site may have been infected. Three weeks in a row, I complain to my nurses who page the IV team who come and look at it and assure me it's fine. Something different happened this (third) week. When the IV examiner came she pointed at this little disk surrounding the actual opening in my skin where the plastic line goes in and said, "Did you know that disk is impregnated with chlorhexidine?" (cholorhexidine is an anti-bacterial or something that stings a lot when applied to open skin) "No, no one ever mentioned that to me before."

Of course that's why it stings after they change the dressing! How simple, a little tiny piece of information and I understood why it hurt. I would probably still have asked for the IV team to look at it, given how vigilant I am for any potential complication that can be seen lurking on the horizon, but I may not have asked them to come the second and third week if some one had mentioned it the first week. Either way, I would have been much less worried.

One never knows what the patient does or doesn't know. One never knows what little piece of information will make the difference between a sleepless night spent imagining sepsis and time in the ICU and a peaceful night knowing that the anti bacterial barrier is quietly at work. More information is almost always better, provided it is relevant to the patient at hand.

I'm going to see how my platelets feel about the NYT crossword puzzle now. I hope your native grown platelets as well as native grown blueberries, spinach, beets and whatever else is coming up are all healthy and hearty.

Day 22

July 8, 2012 is shaping up to be a very nice day. Diane is coming to visit me in a while. My counts have not changed yet and today was the first day that they would have expected them to, but my attending, Marc Gautier says that it looks like my white cells may be actually coming back and instead of circulating so we can find them in a lab draw, they are heading right to an inflamed area that is in TMI-land so you'll just have to take my word for it.

A funny thing happened to me yesterday. I had a sudden very strong desire to see one of my doctor pals up here to tell them about a horrible "customer service" type experience I had here. I have decided that of everyone I know this particular person is the ideal person to fix it and I really wanted to see them so that I could get them to fix it. I realized that I was feeling like this hospitalization was drawing to a close and I wanted to get everything done that I had planned to do during it. I had decided this, mind you, based on no information at all, it was more like an internal shift, a completely unconscious thing. Hopefully my unconscious mind has access to info that my conscious mind doesn't and is not just wishful thinking.

 I continue to be very tired and continue to believe this is my immune system ramping up and sapping all my energy. There is a time in the hospital between 0500 and 0700 when everyone and their dog comes in to do vitals, weigh you, give you antibiotics, turn off the IV, say hello, say goodbye, bring you breakfast, etc. I was so tired this morning that I dreamed I was on a bus in Rio de Janiero, lost, and could not stay awake long enough to figure out where I was. This dream wove in and out of people coming in to do their morning thing with me. In my dream, I kept asking people for help, but then falling asleep in my dream so that they couldn't really answer. When you are so tired that you sleep in your dreams, you know you are tired!

They have red popsicles here that I can have whenever I want so that is a newly discovered plus and Dr Gautier says I should take two showers a day to help out those unmentionable mucous membranes. Add a visit from Diane and it's a great day.

Hope back to work is pleasant enough for everyone tomorrow and maybe take a minute to appreciate your mucous membranes. Love from she of the impaired mucous membranes.

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).

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.

Day 11

OK, got the camera to work. All I had to do was restart the computer. You'd never guess I had a master's in computer science and if I publicly announced my alma mater, they'd sue me! It's certainly been a lot of time and some of it, I actively tried to forget. Anyway, here are a couple of pictures of me:

I look pretty good, huh?

My first watercolor. If the doctor gig doesn't work out, I'll have a fall back career. Maybe.

Thank you, Meg, for the really wonderful card. Thank you, whoever sent me the really cool 5 year journal. There was no message with it, but the idea is that each day I answer a question and then the same question is there the next year and you answer it again. (ETA: turns out it was Eva. Thanks, Eva!)

I will update more later, but figured everyone would want to see the pale but otherwise normal looking me!

In other news, Emily came to visit me and we had so much fun. She stayed the night in my room and we stayed up til midnight and watched old episodes of Northern Exposure.  In some ways, the Northern Exposure episodes have aged pretty well; in some ways, they are so long winded and so hopeful that they seem like they are associated with a different culture almost. If you enjoyed them or if you missed them the first time around, I'd recommend watching one or two (again or for the first time). We also did they NYT crossword puzzle for Wed and Thurs. Wed was sort of a snooze, but I am happy to go on record as a big fan of Thursday's "Pentominoes"puzzle.

Diane came around dinner time and hung out with us. She told us stories about being six years younger than her sister and torturing her before her dates. It is so funny to imagine Diane doing that as she is such an empathetic, gentle, loving adult. I also did not know this, but Diane was the first woman EMT in Massachusetts! Ever. Isn't that the coolest!

My cytarabine rash which Emily may help me take a picture of for Thursday is a little itchy and if you have ever had any doubts about whether sarna worked or not, let me tell you from my experience, it is like rubbing magic right out of the bottle on your itchy spots. I only wish I could rub it under my PICC dressing.

Day 10

Another relatively dull day where things went exactly as they are supposed to. My marrow is failing and I needed a blood transfusion (if my marrow didn't fail the chemo would not be working so this is good news). Terry came to visit me and I walked a mile with him. I got lots of nice phone calls and what I think of as "opportunity visits" from people who were up here anyway. Both Gerry (who sees me frequently in Manch and saw me last Tuesday) and Terry who sees a lot of me tell me I look better than when I came in, except for being really pale. For some reason, I can't get photo booth to work and I forgot to bring the cable to download my iphone pictures to my computer and I am not set up with the cloud so... I'll have to get some help before you can see for yourself. I have not lost my hair yet. Gina tells me that usually one's scalp hurts first so maybe not tomorrow either as it is not sore. Cara, Terry and Gerry have recent pictures of me on their phones so if you want to see for yourself, ask them.

(trigger warning for mildly morose thoughts)
I was thinking today about my legions of doctors and as this is a teaching institution, I have them in all ages and stages. More on that a different day. Some of them are much more satisfactory to interact with than others and it occurs to me that part of that is that some of them love me and some don't. Not the kind of love one feels for one's family or one's close friends, in fact, that would be creepy and anti-productive, but there is a kind of love or maybe it's engagement that one needs to feel in order to be attached. This is probably not true in all medicine; I bet one can take out gall bladders or do colonoscopies almost as effectively without it as with it, but for most of internal medicine and certainly for hospice and palliative care, if you don't have it, it's clear. I realized something like this as a doctor, but what I realize as a patient that I did not see as a doctor is how much courage it takes to do. To be able to attach to people over and over who may have bad outcomes no matter how skillful you are (and none of us is 100% all of the time). To have a patient die and then to attach to the next anyway, knowing it will happen again and again is a little act of courage every time one does it. One can be a doctor and just not attach without being an emotional cripple, still being a doctor who appears to function. So every time we do it, it is a choice. Thank you to the docs who have done it with me.
(end of morose thoughts)

My counts are down hemoglobin 6.9 (although I had a unit of beautiful red blood cells so now it's higher--thank you kind donor), platelets 33, white count parked at 0.3, ANC 10. My hair is in place although I do think my part is wider.

Fun news about Ellie is that she did her first day of official work today. A friend of Terry's is moving to Kansas (for real, Dorothy) and has a five year old daughter. Ellie's job was to play with the daughter while the mom packed/worked. She was there for five hours and came home feeling really tired and extremely proud, as she should.

Here in Lebanon, at the end of the day the sun dipped below the trees and finally came out. It reminded me of living in the Bay Area when the sun would finally dip low enough to be under the fog that stretched out from the land over the ocean and because Berkeley was right across from the Golden Gate, there was nothing blocking it. There would be a few minutes of this fabulous golden, warm light that would sweep across the hills then fizzle out.

I hope there is warm light and attachment for you today, as there is for me.

Day 9

well, wasn't that little fever fun! The nurses were in here like all night and finally they put bags of ice cubes in my arm pits to get rid of it when all else failed. I was so exhausted that I slept about an hour that way and only woke up when my arm started cramping. It finally worked and by 10 am, my fever was all gone and I felt relatively decent. I keep telling people when I had a fever, I felt exactly the way you feel when you have strep throat and are waiting for the abx to kick in. Now, my throat is sore still, but I can eat chicken soup with rice and drink water so really life is just fine. When I was feeling good, I took a shower and a little while later my friend Karen came by from Home, Health and Hospice and went for a one mile walk with me, also bringing me a beautiful wooden pendant for my window and a lovely cherry tray.

Then Cara came to see me and we had a wonderful visit. I got to see pictures of her niece and she made sure I ate my dinner. We chatted about the misc stuff we always find to talk about and her cousin just happened to be working tonight in the MICU so she got a bonus visit in. My fever just barely came back this evening and now seems to have gone away so I'm hopeful for a good night. I'd like to avoid ice cubes in the arm pits, in particular.

My attending tells me that my counts are doing exactly what he would expect so that is good.


(trigger warning for morose topics for the next 3 paragraphs also for muddled embryonic thinking)
I noticed yesterday that I called it "my leukemia" for the first time when I was talking with one of the aids. I have been firmly thinking of it as a thing that has no real relation to me, that has been visited upon me but was able to consider it as mine yesterday. It is sort of a sad thing, this leukemia of mine, one way or another, its lifespan is quite limited. On top of that, it can have good consequences--like it can make me a better doctor and help me understand how many people there are in the world who love me, but really its whole oeuvre is destruction, spoilage, gumming up the works. It can't have very good self esteem.


Related to this, I've been reading and thinking a lot about the buddhist ideas of loving kindness and compassion. I've been trying to imagine being compassionate toward my leukemia and as you can see above, I can manage a little for its situation, but fact is, I have been, am and intend to continue to do things to kill it. That's not very compassionate.


In concert with that I've been thinking about how unlike the usual paths my mind takes thinking about getting rid of the leukemia is. It is rare for me to think in terms of destroying something; metaphors I use are more like maybe packaging it up in a plastic bag, disinfecting it, walling it off so it keeps out of trouble, not destroying, crushing, killing. In this case, walling it off or disinfecting it is not going to work, I need to be more definitive.


One of the many ways in which this has been an opportunity for personal growth.


(end trigger warning)
My white blood cell count is 0.3, my platelets are 63, my hemoglobin is 8.2 and my absolute neutrophil count is 30. All exactly as expected.

The next big event is my bone marrow biopsy on July 2. The whole purpose of this is to prove that my marrow has been killed off. We will be looking for an "empty marrow." Between now and then, we will treat fevers, keep my spirits up and eat chicken soup with rice.