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!