Saturday, June 30, 2012

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!

Friday, June 29, 2012

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.

Thursday, June 28, 2012

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.

Wednesday, June 27, 2012

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.

Tuesday, June 26, 2012

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.

Monday, June 25, 2012

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.

Sunday, June 24, 2012

Day 8

today the first round of chemo ended. what should have been an extremely happy event was marred by the appearance within fifteen minutes of freedom from the IV pole of a fever of 101.7. This is what people with no immune system do; it's well known, expected, etc. although not everyone does it according to my doc. My throat seems to have been the source and it's nothing that a little ceftaz can't cure. I had felt like maybe I had a fever earlier and requested a temp check and it was like 99.1 and then she came in for a full set of vitals and it was kind high. soon after I felt so awful there was nothing I could do but go to bed, but it turned out not to matter because I had to pee in a cup and go get a chest xray before I could blessedly get into my bed. The transporter gave me a little lecture on the value of coffee enemas in his cancer care which is something I didn't really expect at Dartmouth Medical Center. He also told me about how he had done homeopathic things for his cancer first and he's sure that that primed it for the chemo. Another surprise. I think I'm going to stick with the daunarubicin and cytarabine, myself, but I was relatively gracious if incredulous.

Today the family was here again and that was really nice. They left in waves around noon and then Reggie (sister) called and we had a nice chat--it's been a lot of years. She teaches seventh grade English in a suburban Chicago school. I have lots of patients with seventh or so graders in Bedford so it was fun to listen and think about the differences. Reggie says most of her special needs kids are ADD or ADHD but my sense is that in Bedford, autism is more common. She is just starting to get a spike of autism in Chicago.

Diane came and spent the afternoon with me, taking pictures of the nurse taking my last bag of chemo down. We also went for a 0.7 mile walk which is pretty good given that my hemoglobin is 7 and change. She brought me brownies (which I know are delicious b/c Diane is a great cook), but if it's not chicken soup or special K, I'm not really interested in it.

My fever seems to be coming from the back of my throat and I don't understand how someone with almost no lymphcytes can have swollen lymph nodes, but I seem to.

So, tomorrow hopefully will be a boring day with no more fevers (lots of luck to me there) and a visit from Cara. Diane tells me she can only get to this site by clicking on the link in the original email, but I've checked the settings and it seems to be public. Does anyone know how to fix this?

Saturday, June 23, 2012

Day 7

Today was a completely wonderful day. Terry, Tommie, Ellie and Emily came to visit me. I got to spend some time with each of them and then to go for a walk with them all. Emily and Ellie pushed my IV pole so I really felt relatively like I normally do. Then I took a nap and everyone returned to the hotel: Ellie to arrange her clothes and toys in the room's drawers, closets and table tops; Terry to nap, not sure what Emily and Tommie did. Emily and Tommie came back, we worked on the NYT crossword puzzle and Ellie spent two hours swimming. Emily and Tommie got to be here to see the last of the first round of chemo hung. Yahoo! Tomorrow at 1900, chemo down, no IV pole. I'll be free (except that I won't be able to leave my room without a mask or the hospital at all), but it will be a step in the right direction.

I got the following text today:
"chaplain Rick asked if he should send flowers. I explained. [Mary adds: I can't get flowers b/c of mold potential given that the point of the chemo was to obliterate my immune system] He asked about fruit. I said it was seriously iffy at best. Asked about sending you a book and I said you were reading different from normal stuff - right now a graphic novel about mice. His eyebrows raised and I realized to him graphic = sexually explicit! I assured him you haven't gotten into rodent porn." I am reading "Mouse Guard," a graphic novel about the mice warriors who ferry other mice from one mouse city to the others.

Other interesting things about today for the doctor geek types: my ANC is 10. I actually feel totally fine, except a little more tired than usual. There were two humming birds that I saw at the feeder today. I was hungry twice and ate two extra bowls of chicken soup and I walked 1 mile according to my iphone, but the best thing about today is that I got to spend it with my family.

Friday, June 22, 2012

Day 6

I will write more later probably, but this is funny and hopeful. I was sitting at my "desk" doing neurology MKSAP questions and thought to myself, "gosh that is a really uncomfortable feeling in my stomach. Hey! that's hunger." It's nice not to feel nauseous (so far today).

The other interesting thing that happened today is that I was lying in bed, thinking I'd do a little visualization before I got up and evidently my conscious mind is not in charge of the content entirely. The marrow cave has changed again and now there is stuff dripping from the ceiling and some of the lentils have this ick dripped on them (they used to be shiny, white and clean). It also turns out that the lentils move slowly through the rubble, like very slowly. They have to turn around a lot and find other paths because evidently they are not very good at getting through obstructions. There is almost no movement from the piles scattered around the cave, just an occasional collapse or shudder. I wonder where the lentils are going and what they are doing next. It is very strange to have this little internal movie going on. I've never had an experience like this before. I assume it's a collaboration between my conscious and unconscious mind and who knows? maybe all of our unconscious minds together? I wish I could draw well enough so that you could see but maybe it's fitting that your mind has to build it for itself too.

The hummingbird feeder got put back up yesterday, but no hummers yet today.

Otherwise, today was a very nice, relaxing, quiet day. I fixed myself another T shirt so I can be clean for the fam tomorrow. I went for a 1.2 or so mile walk back and forth, back and forth and then on my way back there was a woman sitting in a wheelchair who looked parkinsonian and demented and couldn't answer coherently when I asked her if she was OK. She was all by herself so I waited by her until her family came to pick her up and forgot to turn off my runkeeper so it said I went 1.5 miles, but took like 3 hours to do it (by the time I remembered to turn it off). "Current pace 50.7 minutes/mile."

The nurses are so nice to me. Some one went home today (in fact, I have new neighbors on both sides) who had a refrigerator and they gave it to me so now I can have extra bowls of chicken rice soup stocked up in my room as that is actually the best thing in the whole world to eat. There is a floor fridge, but it smells and it is not entirely clear that it is the cleanest fridge in the world so I am feeling quite privileged today to have a nice clean fridge on loan in my own room.

Tomorrow, Ellie, Emily, Terry and Tommie are coming to see me! Sleep well, all.

Thursday, June 21, 2012

Day 5

well, first the techie stuff: no blasts in the blood, ANC 190 and cytogenetics normal. What the first thing means is that the chemo is working (blasts are the bad leukemic blood cells and when I was diagnosed I had some and now I got none). good news. The second means that my normal white blood cells are tracking downward (expected b/c the chemo kills off the flowers with the weeds). The third means that I have a chance of getting through without a bone marrow transplant. Dr. Hill really thought I was going to need one--that my leukemia had developed in a way that would make chemo not strong enough to get rid of it but the test that came back today said that I "dodged that bullet." Now there is another round of tests to determine if I need to do it or not, but so far, it looks like I may be able to get away with just chemo. Excellent news!

Now the maintenance stuff: I took a shower, walked 1.6 miles and ate 3 count 'em 3 bowls of chicken soup and half a bowl of green beans. I had reiki for the first time and that was interesting and relaxing. The humming bird feeder got knocked off a few days ago and still has not gone back up so that is sad and means no hummers today. The woman who puts them up is supposed to be in on Friday.

There is a nice army of volunteer visitors who come by to chat. I had two this evening. We talked and the 4,000 footer mountains in NH and hiking them. Dan facetimed me from Toronto--he's on his way to the international tuba convention in Austria, where he's performing, not that I'm really really proud of him or anything.

Want to know about the visualization I do for my bone marrow? Sure, you do. It's kinda silly maybe, but it works really nicely for me. There is not a lot I can do besides take my meds, go for walks and eat well so I embrace the feeling that this is something I can do to help myself. I imagine my marrow cavity is like a cave and I visualize my little healthy white blood cells (the few that are left) as little shiny white lentils spinning slowly with a really bright light in front, spinning in a slow circle to cover the space on all sides of them. They are powered by goodness and love and righteousness (this is where you help me) and their beam slowly kills the bad cells as it  spins by them. The bad cells are little white lentils too, but they have red and black blotches and lumps on them and they're not shiny. The cave now is a mess, there is garbage everywhere, dead, dying, half dead leukemia cells in piles and clumps and some of the good ones dead and dying too. The good white cells note that some one seems to be filling the cave with a poisonous gas, but they are going to stay and shine their little beams of righteousness, protecting the cave, right to the death. Each good cell sometimes catches a glimpse of another good cell's beam out in the distance, but they are mostly doing their duty alone.

Why does the good cells' beam kill the bad cells? Because they are so bad and the good cells are so good, they cannot tolerate it. It's that simple. Thank you for your help powering up my good cells.

Wednesday, June 20, 2012

Day 4

Today was marked by lots of wonderful visitors and relatively symptom free-ness. And I found out I got nominated for an award: The granite state beacon award. I don't know anything about it, but it's kind of cool to get nominated for something that sounds so nice. The letter said it was for being a good civic deed doer and a positive role model.

Terry and Emily came to visit me today and then a little later Diane came to visit. I sent Terry and Emily home with treats and Diane home with a sewing project. One of my nurses told us how to modify a teeshirt so that it would work with a PICC, but Diane has plans to modify the modification so that it is even spiffier. I can't wait b/c I only have one modified sweatshirt and while pre-leukemia, I would have no qualms about wearing it intermittently for a week (TMI?), post-leukemia, I do.

I also got a stuffed animal today in the mail and two books. Thank you, Dan and Matthew. 

I felt great today until about 1600 when nausea popped up and reminded me of its existence. So, I did what all people who favor denial as a coping mechanism would do, I took a nap. I woke and felt a little better and ate a little dinner and then got zofran and feel absolutely perfect now. The first two days the zofran gave me a headache, but evidently I have gotten over it. (for my medical friends, they gave me 16 mg's of it--whoa, huh?)

I actually requested a second try at dinner and what sounds good is bizarrely ramen noodles. I don't make it up; I just report it.

I'm done with the donna red stuff and just on one kind of chemo now that goes 24/7 for three more days, then it's time to wait and make sure my body is responding appropriately. Die, leukemia, die.

It's time for vitals again. See you tomorrow.

Day 3

well, today I realized that the part of the subtitle that says "how she got rid of it" is really only partially true. On the one hand, it is I that will be rid of this thing, but it is my team and I that will be doing the ridding. English is so beautifully nuanced.

so, yesterday was my last daunarubicin which is the red stuff that affects my bodily secretions' color (for the more delicate among you) and also makes me kind of nauseous. I am happy to have that behind me. It seems to be working at giving me side effects, hopefully it is having the same effect in my marrow.

so, have I described the overall game plan? Here it is. this chemo for 3.5 more days to wipe out everything in my bone marrow, then wait around for 7 days while my bone marrow finishes dying off, then recheck biopsy around July 1 to see if my marrow is all dead. Dr Hill says it's like having a garden and you have weeds and flowers and you douse the whole thing in weed killer and then the flowers come back but not the weeds. So, on day 14, my marrow ideally is "empty." if it is, we then commence waiting for the flowers to come back. when the flowers come back sufficiently, I get to go home and recover a bit. then a while later I return for three more rounds of chemo. The one potential wrinkle is that Dr. Hill is worried that I may have had a longer term process going on and if so the chemo will not cure me even if it looks like it has so he usually recommends that people go straight to bone marrow transplant at that point. I'm hopeful that I can avoid that, for sure.

Anyway, so now, what I am imagining is that the chemo is killing off all the bad players in my marrow and the flowers are stronger and hanging on better. My hemoglobin, platelets and good white cells are "hanging in there" in my labs so I think this is a good interpretation.

Yesterday I had three doctor friend visitors, Ira (who came initially for a social visit and then we decided to make it a professional visit), and Eva and John. Because of the debacle of the daunarubicin ("donna ruby sin") yesterday, my chemo got way behind schedule and Eva and John got to be here for it again.

I got to talk on the phone with Dan, my bestie from age 14, and Tim who has known me since before Emily was born so that was nice too. Someone from the palliative care department came and gave me a massage which was pretty fab too.

Physically I feel better today than yesterday so that's good. I don't seem to have any worse side effects than nausea and a dry mouth so it's all good (except having the leukemia in the first place).

Monday, June 18, 2012

Day 2

Today was a very pleasant day. Terry and Emily came to visit me and I got a package from Eva and a call from Dan Bogs (brother #1). There were all kinds of mechanical troubles with my PICC connector and it leaked daunarubicin all over the place. The nurse cleaned it up and double wrapped it in two chux and a plastic bag.

It's so funny, they give chemo dressed in space suits and double gloved and then they take the same stuff that they are trying to protect themselves from and inject it straight into my bloodstream. It's so dangerous we cannot lose track of a single drop, but here are 200 cc's for you. Of course, I understand the difference between nurses who are exposed potentially to multiple different chemos every day for decades and I understand that sometimes landfills leak and it would be good not to get chemo in the environment, but all of that said, still.

The nurse cleaned it all up, replaced the connectors and tubes and gave me the daunarubicin. Today it's kind of barfy; yesterday it didn't seem so much. Fortunately, there is only one more day of it.

I seem to be doing ok and I can even say to people "I might need a bone marrow transplant," but when Dr. Hill talks about finding out in the next 2-4 days if I do or not, I feel my stomach drop out just like on a roller coaster. I keep reminding myself that I don't have to deal with that today and I can't effect it by worrying about it at all. That helps.

The expression "take yourself by the hand, Mary," comes to mind.

'Til tomorrow.

Sunday, June 17, 2012

Day 1

so, we'll try this for ease of communication.

It's actually been really fascinating to watch my emotional state. I found out on Thursday that I might have leukemia, found out on Friday that I do have leukemia and started chemo on Sunday (today, day 1). Prior to starting chemo, I was in denial. I did not have leukemia and Dr Hill would come in any minute and say, "you're right; it's a med reaction and a lab error and we've fired that tech and you can just go home now. sorry you cut your hair and, here, let me take that PICC out." I thought when the nurse gave me chemo and I really couldn't use that denial any more that it would be a terrible moment for me, but it turned out to be ok.

My friends Eva and John came over and since they didn't know "my story" I told it to them. Awhile into it, the nurse came in to give chemo and I made a joke about her not having to give it, but by then I had gone through enough of my life story with John and Eva to really feel like I could do this; I had actually already done a lot of hard things and come out on the other end OK so really, this was just another thing. A nuisance and a big thing, but it was really doable. Look at all the other stuff I had done. Go, do.

After John and Eva left, I talked briefly with Terry and got ready for bed. Then my phone rang and it was Terry Bogs (brother number 2 for those of you not acquainted with the clan--same name as my husband for maximum confusion). I was so happy he called.

Went to bed and I may have napped briefly, but then woke up thinking to myself as I heard my chemo pump whirring softly. "o, my wonderful chemo, thank you. here's a little bit of love to ride in on every drop." Then I woke up fully and said, wow! is that 180 or what!

I felt intermittently achey from time to time and briefly like I had a little increase in temp (like 99.5 ish). It has been really pleasant not to be visited by these for a couple of days. I immediately decided that was all the leukemic cells dying and spitting out their cytokines so look, the chemo is already effective (against the leukemia that I was sure I didn't have 12 hours before--I am so wonderfully flexible mentally). That passed after about half an hour and now I feel pretty darned good again. Although the citaribine does taste very faintly of garlic and salt to me. The good thing is that makes me drink more water.

Here are my counts for today:
visitors: 4
wbc 1.6 no circulating blasts today which I think means my most excellent native immune system has finally gotten off its butt and is spontaneously killing off the leukemia. My fellow tells me that, no, it means that I am well hydrated and they're more diluted. My BUN went from 7 to 5 so maybe, but I prefer my scenario.
hgb 9.9 (further evidence for dilution)
plt 137 (further evidence for dilution--both down a bit)
ANC 210.
All in all, I am satisfied with these labs for a start and hopeful that tomorrow will be as good as today.