Friday, August 31, 2012

some links that I liked

Here are a couple of things I found at various points recently that I really liked. You may enjoy them, too. I hope so.

I really like this cartoonist and have given some of his cartoons as presents. The cartoon is not the best of his, but the sentiment is exactly right: "Do your best work, focus on adapting and effecting change on what you CAN control. Let China be China. Everything will turn out okay."

Survival International works to help non-contacted, indigenous people to, well, survive. Their site is fascinating and, at times, incredibly depressing. I'd encourage you to look around. I find the idea of whole tribes of people living in the world right now who know nothing of the world outside their traditional group totally mind-blowing and think that is something worth preserving. Anyway, this is a happy slideshow "revealing some of the talents of tribal people in honor of the olympics."

Finally, evidently "Literary Mama" is quite well-known, but I had not heard of it before today. "Creative non-fiction" is, I guess, what this blog is, so I read the current offering  for creative non-fiction--you know, to check out the competition. Wow! I think Felicia Schneiderhan really captures a piece of what happens when you become a mother.

I hope you enjoyed one or more of these.

Day 76 - no news like dog news

For the first time since consolidation, we went to dinner at the BlueMoon. It's been a long time since we've been there (like a whole month) and it was really nice to return. They had this incredible scallops and lobster with cream sauce and mushrooms dish that I had and Terry thought it sounded good, but couldn't have it because of the milk so the chef just whipped something up for him. Our waiter told us the chef had told him that he just threw together an aioli to go on it. Terry's dinner was delicious by report and looked it. I thought that was really kind of them to do and so far out of their way as to be like the next county over, and very, very nice. The hostess/owner also made a sangria for me that was not on the menu, but is by far my favorite alcohol to drink. Yum! We feel very cared for and as though our hearts as well as our bodies are nourished when we visit. This is why I dream about going to Blue Moon when I am in chemo jail eating hospital veggie burgers and other neutropenic fare.

Emily called and is enjoying her new job. Her roommate is coming back from Maine tonight so she is excited to see her. Ellie asked me yesterday to go on a bike ride with her today and Terry and I even went to the storage unit to get my bike this morning before he went to his studio, then Ellie backed out. We had a nice day anyway mostly just hanging out. I did some weaving, but miscalculated how big the project is so now I have half of my heddles (the white string like things) trapped on the wrong side of the loom and may have to make a pillow with the stupid dimensions of like 9 inches wide by 15 inches long. I was hoping for 15 x 15. I learned a lot from my last project but clearly not enough!

I took Maggie out to PEA today, another 3.5 mile day and when we were out in the forest on our last little bit, a woman came up to me and looked me straight in the face and said very seriously, "so, how are you?" I was a little surprised and asked her how I knew her. She said that we didn't know each other, but that she had had breast cancer and wondered how I was. We had a nice chat and after a couple of minutes figured out that her dog, Mollie, and our dog both get walked regularly by the same person so we almost knew each other. I certainly had heard about and even met her dog before. It's a small town after all. Somehow Maggie pulled something on our walk and when she gets up after a rest, she limps for a few minutes. A limping dog is awfully cute, but also really pathetic. The real wonder, given how she hurls herself around the forest and into the river is that she doesn't injure herself more often.

me: good dog! Maggie: ball, ball, ball, ball, ball!

See the speck about halfway to the telephone pole? That is Maggie's head. That thing by the shore is a rock.
There continues happily to be no leukemia news. I continue to feel really well and to work on keeping my "exercise, mood and nutrition up" as Dr. Manno says. My next medical activity is Tuesday when I get another set of labs and a visit with Dr. Manno. I'm hoping that will all be very boring and that Tuesday's entry will be a discussion of the traffic in Manchester or progress on weaving pillows. I hope the parts of your life that you would like to be boring are.

Thursday, August 30, 2012

Day 75 - Tom's wake

Most of today was spent in happy, relaxed summer activities. I wove a bit; I walked the beach (3.5 miles again, wet shoes, wet socks, wet feet, ah! my first time since my diagnosis); I ate blueberries and potato chips; I did the sudokus and crossword puzzles. Another day of ordinary ordinariness.

In the evening, however, I went to the wake for one of my CHH co-worker's husband. He was 55 years old and died at work on a construction site when he was hit by a cement truck. I keep thinking of how, perhaps even more than with the leukemia diagnosis, this has a before and an after that have a huge rent in between them and how can one put the two together? I looked for a reference on the internet, but I know I have seen pictures of those narrow but incredibly deep holes that form occasionally at fault lines after earthquakes. That is what I imagine it as looking like. Life before, life after, and in between this unfathomably deep fault in the earth's surface that is so narrow you could step across it.

Despite the fact that his death was tragic and shocking, the wake was really lovely. His children were beautiful and gracious (they're all in their mid 20's or so), his brothers and sisters were kind, engaging and so beautifully supportive of their mother. His co-workers were shocked and grieving him strongly, but the man behind me in line told some nice stories about Tom and made me feel sad that I had not had the chance to know him in life. His mother was beautiful and so deeply calm while being very very sad. I was glad to have gone.

A couple times when I was talking with people, I made reference to my leukemia and pointed to my bald head by way of corroboration and both times people seemed surprised by it, as though they thought I was bald as a fashion statement. I was super dolled up--nylons, fancy dress, necklace and earrings so maybe that had something to do with it and neither of them knew me, but wow! if I do the rest of the outfit right, my pate can pass for a fashion statement. Perhaps. Yes, me and Sinead, intentionally bald and beautiful.

After walking seven miles in two days and then standing for an hour in Dansko's my knees are really talking to me tonight. I am going to take them to bed a little early and see if sleep doesn't quiet their voices. I sure hope it does because I have a request for a bike ride tomorrow that I really want to honor. It will be our first of the summer.

I was quite moved at the wake; one of Tom's siblings said that he never wasted time and was always doing something, especially if that something was having fun. It made me think about how he did not have as much time as one would have assumed he would have. It is not hard to draw a lesson here.

I feel like I am a pretty good lesson-finder. I hope I am as good at learning them. I hope you are also learning what you want to and what you need to from your life. I also hope you have a safe and fun Labor Day weekend.

Wednesday, August 29, 2012

Day 74 - perfectly ordinary ordinariness

I am not sure I really need to write much more than the title and you will have a pretty good idea of today. I drove to Manch with Terry--he had to get labs done and I am not super booked most days so I enjoyed keeping him company. Then I did the NYT crossword puzzle alone (not nearly as much fun without Emily!) and did some weaving. Maggie and I went for a 3.5 mile walk in PEA and around town. She went swimming in the river and got relatively tired out. I saw my therapist, stopped at my favorite cheese shop and finally finished the too-long warp that I put on my loom like a month ago. I did learn a lot from it, but I am very tired of it and ready to move on to my next project (tomorrow!).

I had been postponing going in to the Cheese Shop because we know the owner well enough that we would have to have a conversation about my leukemia. As I've talked about before I am a little tired of telling people I have leukemia and I'm fine and I'm doing 5 rounds of chemo and ... so I had to wait for a day when I was in the neighborhood, in the mood and not neutropenic so I could eat the incredible double cream brie she sells. These things lined up today. At first Nancy didn't recognize me, then after a couple of minutes she said, "Cancer?" instead of "hello." I told her "leukemia" and that I was doing really well, had not had too rough a go of it and was expected to continue doing well. She asked a couple of questions and then we moved on to her telling me to tell Emily and Terry "hi," how was Emily liking U-Mass, etc. At the end of the conversation, she told me that God must have sent me in to her today because she was stressing out so much about one of her sinks being plugged and, now, she had been reminded that, really, it's not such a big deal. It was actually a nurturing retail interaction and I left with a big container of the world's best three bean salad and a nice big piece of this great brie. I felt badly for having underestimated Nancy and left, more importantly, with a renewed sense of admiration for her.

I am completely lacking in leukemia news or even thoughts. I think that's part of why I am "a little tired" of talking about it because it has moved into the background of my life for the most part and I don't like having to put it front and center and talk about it. I don't mind putting it front and center to do something about it, but just for chatting? Let's talk about something more interesting, like the weather.

Here's to a day of discovering more grace than we were expecting in other people and for me, and you, too, if you want it, ourselves.

Tuesday, August 28, 2012

Day 73 - more on coordination of care

I felt so horrible yesterday that all I could think about was my virus. I completely neglected to update everyone on Ellie's first day of sixth grade. She is at the middle school now. The way our school district works is grades K-5 are each done in the towns and grade 6-8 (middle school) and 9-12 (high school) have kids from 5 surrounding towns. This means there is a huge influx of new kids for Ellie this year which should be nice. Some of the towns have like 40 kids to a grade so the middle school will probably be a bit of a shock for those kids. The Lincoln Street School where Ellie was last year has (I think) like 200 kids to a grade so the 120 kids in her 6 classroom "team" is not overwhelming at all. She knows a few of them already and should do fine at getting to know more. She was happy with her back to school outfits both yesterday and today and had a little bit of homework both days. I think it will be a good year. She likes her homeroom teacher so that's a good start.

The other news of my life is that today Emily left for college. She drove her Subaru station wagon to Amherst, MA all by herself and moved into her room all by herself. She is getting to move in early because of her job and her roommate is still on vacation in Maine so she had to arrange the furniture all by herself. Last year when she moved in, we all drove up with her and helped move furniture, carry boxes up the stairs, etc. In fact, Ellie got to miss a day of school to do it. This year, she just backs down the driveway and is gone. She called to let me know she got there safely which was much appreciated.

Otherwise, today was another largely quiet and uneventful day. I tried to do last Friday's NYT puzzle on my own and it just wasn't any darned fun. I found out yesterday that Will Shortz shares my birthday. He is a little bit older than I am, but was also born in the MidWest.

I wanted to talk a little bit about coordination of care. You will easily draw the conclusion, but let me tell you the story. So, on Monday, my labs were really good (it turns out I misread my lab results and my ANC is actually almost 4,000--so that's normal). I asked if I should keep taking my anti-fungal, anti-bacterial and anti-viral. Dr. Manno told me he thought yes, but that I should ask Dr. Hill. I called up and by the time they got back to me, it was today. They said no more anti-this, that and the other and that I didn't need any more labs until my next visit to start chemo jail on September 14. Then about 40 minutes later Dr. Manno's office called me and asked me to come in next week for labs and a visit with him. They pointed out (rightly) that my platelets and hemoglobin are not normal yet and that they would like to follow them to normal. Of course, it's all a matter of what one worries about; there really is no reason my hemoglobin and platelets should not continue towards and into the normal range, but it's always nice to witness and prove these things.

The conclusion, which I think is pretty self-evident, is that NCCC in the north and south would end up looking a lot more smooth and coordinated if they shared their plans with each other. It is kind of awkward to have two fully independent hematologists. They are well coordinated in that Dr. Manno is clear that he defers to Dr. Hill in my case on all things directly related to the treatment and I have been impressed with how well they do that piece, but it would look so much nicer if the little auxillary pieces were in place. I don't feel my care is compromised in any way, just the elegance and style.

I spoke with my friend Linda from Minnesota today and we reminisced about when Ellie was born. Her family were our first visitors in the hospital and she agreed that it was so nice to have a loving, happy thing in their life at that point. I think Ellie had not even had her first bath at that point and was a little less than pristine, but, o, so cute!

My cold is about the same. Last night I woke up with a stuffy nose and whenever I wasn't blowing my nose or sneezing, I could hear Emily coughing. What a contageous household we have here.

I am hoping for a day without excessive mucous for myself tomorrow. That is a fairly prosaic wish, but I will wish it for you, too.

Monday, August 27, 2012

Day 72 - a stupid URI

I guess it was inevitable. Terry, Emily and Ellie all have had colds in the past week. I seem to have gotten it now. Fortunately, no fever so far, although I feel crummy. I am also convinced that a virus I had in March is what started my AML so I'm a little nervous about what mischief this one might be doing.

I went to the NCCC today and my labs looked great: hemoglobin 9.8, platelets 114, ANC 730. Seven hundred and thirty is greater than five hundred so I can relax the neutropenic precautions! Hooray! soon I'll be eating totally regular food. Liver and kidney labs were also normal.

As right now I want nothing more than my bed, I am going to say good night and work on moving in that direction.

May you avoid the URIs that are going around right now.

Sunday, August 26, 2012

Day 71 - happy birthday

Today I turned 48. I am very happy to be able to say it.

My birthday wish for myself is 49 without leukemia. My birthday wish for you is your next birthday in good health.

Saturday, August 25, 2012

Day 70 - suffering and the happy return

I wanted to talk today about suffering and its role in my leukemia. I feel I have not really suffered much from it in any reasonable sense of suffering. There have certainly been uncomfortable times and times I was not happy or nauseous or fatigued. I have had almost no pain. I have been really overwhelmed to the point of thinking I should just stop chemo three times, but never for more than a few hours at a time. Some of these events have risen to the level of suffering, but mostly not particularly. I have not really felt that I suffered much more since being diagnosed and treated for  leukemia than I suffered before in my regular day to day life.

That makes it sound as though my day to day life (my pre-leukemia life and the part of my life now that is unrelated to leukemia) is pretty bad, but, in fact, I do not think I suffer particularly more or less than anyone else in my day to day life and I do not think I have really been suffering more than your average, middle class, American woman either before or after getting the diagnosis.

Part of me is very very happy about this because I don't really like to suffer and part of me is very very worried about it.

The two organized ways of making sense of the world that I know the best have a very different ideas of the role of suffering. Catholicism (at least the kind I was raised in) has this idea of "offering it up." The way "offering it up" works is that you offer your suffering up for a particular cause (when I was a kid, my favorite one was starving kids in Africa) and it helps you because then it immediately becomes meaningful suffering and it helps them because somehow it lessens their suffering. I am not sure how the calculus on suffering offered up works and never really heard an explanation of it at all. Perhaps it is a kind of turbo-charged prayer. That there is a way that one person's suffering could make another's less conflicts with this other idea that whatever is happening to you now is really part of a bigger plan that humans (i.e., the sufferer) just can't understand and whatever suffering you are having now is meant for you now and there is some better outcome down the road that wouldn't have been possible without the suffering you are undergoing now. There is finally a third view of suffering that may be idiosyncratic to my upbringing (I was taught it with the same authority as everything else, but now that I write it down, I'm not sure I've heard other people raised as Catholics talk about this). It clearly does not even make sense and yet, it's there. This view is that if you do not suffer for something, you don't really deserve it. You can see where this would get me into big trouble: many people (most people?) really suffer at times from their cancer treatment and I am not suffering much. Does this mean that I don't deserve my remission? If I don't deserve it, will it not last? I can recognize intellectually that thought as absolute rot, but like the other dysfunctional things one learns early in life, it is very hard to root out.

Contrasted with this is a little bit of Buddhism (suffering exists, suffering has a root cause,  there is a way to stop suffering, that way is the eight fold path). Suffering is seen without value; it exists. Organizing one's life to avoid suffering is seen as not only acceptable, but desirable--wise and skillful. This view of suffering is so opposed to the previous paragraph's that I cannot understand how I can put them both on a page together to say nothing of holding them both in my head. Clearly there is some difference in exactly what is meant by "suffering" as the Catholic suffering might include all five pokes of getting a PICC and the Buddhist might not, whereas I don't know if the Catholic would include the way I felt when I thought maybe it was time to stop doing chemo and the Buddhist would definitely include that as suffering.

Or perhaps my understanding of suffering in Catholicism is immature because I found it so uncongenial that I haven't updated it in years. Or maybe my understanding of suffering in Buddhism is immature because I don't know much. Or perhaps both. Or perhaps I am suffering enough from not suffering enough that that is enough suffering to earn my remission.

Changing to a happier subject, we got Ellie today from PaPa camp, a performing arts camp that is run by the Seacoast Repertory Theatre. She loved it and wants to go back next year. We watched her talent show, met her counselors, etc and had a good time. It is so nice to have both girls back home at once. Tommie and her dog are both here, too, so we are all under one roof tonight.

I hope you are able to gather those you love together soon, too.

Friday, August 24, 2012

Day 69 - more about the ED

Today, I am getting quite tired of not having enough white blood cells to eat things I want to. There are so many delicious things in the world that I cannot have right now. The fact that it is really bothering me to see and think about delicious things I cannot eat probably means I am getting better because my desire for pesto, lobster rolls, yogurt, deli sandwiches is much stronger today than it even was two days ago. I don't get my labs checked again until Monday and I may have to resort to super-gluing my teeth shut to stand the weekend.

Evidently today I am only going to talk about food because I wanted to describe my visit to the CMC cafeteria while Terry was off getting his ultrasound. I went at about 6 pm which is not the smartest time in the world to go, but I wasn't hungry earlier. Because my white cells are still kinda low, I am on the "neutropenic diet." You can google it if you want to know it in detail, but the basic idea is to be sure that the bacteria/fungus count of food I eat is down as much as possible. There are several versions of the neutropenic diet and I try to do what Dr. Hill's handouts say which may differ a little from what the internet says. Leafy things have to be well cleaned which means I really can't eat them except at home; fruits and vegs have to be scrubbed which limits them as well, but if they are in hot soup in limited amounts, I figure they're probably disinfected, but I avoid vegetables that might not be completely cooked like a delicious bowl of peas when I am not in charge of cooking them myself.

Here is what happened at the cafeteria: The soup was honey carrot (can only have pasteurized honey and carrots need to be scrubbed--if it had sounded good to me, I would have asked those questions). The salad bar was totally out due to can't be sure it's well enough washed. The hot food table had this deep fried hot chicken, mashed potatoes and gravy and some other things on it. It sounded exactly like dinner to me. I explained my deal to the very nice woman behind the counter who was not really sure when it had been made so she sent me on to her boss. He was very nice and told me the food had been cooked at 4 and kept at 140 degrees since then. That didn't sound like the safest thing so I crossed the steam tray off my list. He was very nice and offered to make me a hamburger just for me so we could be sure it was fresh enough (trouble is I really try not to eat beef--I feel bad for the cows). Interestingly, he had not heard of the neutropenic diet. One hopes he is not the manager of the in-patient food service.

The next area is the grill. I had them make me a grilled veggie burger with swiss cheese (can only have some kinds of cheese due to mold content--no sharp cheddar, brie, feta, farmer's) and they said the french fries had been made six minutes before. This seemed safe. They had single use mayo and catsup packets (not supposed to use condiments from large multi-use containers). The next counter over had deserts (not interested now, thanks), yogurt (live cultures--nope--although I am very jealous to see that a lot of neutropenic people get to eat yogurt with live cultures) and fruit (could I wash and scrub it in the ED exam room? probably not.) So, dinner was fine; the french fries were actually quite tasty and really hot, but overall the options were rather limited. In the scheme of things, really, I did not go hungry so I can't complain (much), but this was the first time I'd been in a hospital cafeteria since being on the neutropenic diet and I was kind of surprised there weren't more options.

Other than craving all the delicious things there are in the world, today was another pleasant and dull day: a walk, some errands, some letters written, a little weaving. Poor Emily has a cold and I got to take care of her just the tiniest bit which warms a mother's heart.

I hope you are able to eat all of the delicious things you want this weekend. Please, have something tasty for me.

Thursday, August 23, 2012

Day 68 - discharging patients

Holy buckets! Today was a packed day! It started with the smoke detector going off at 01:55 this morning and my debating for about one minute if I really wanted to wake Gary and Barbara as they said to. Before I finished debating, it had stopped so I went back to bed and then told them in the morning. Ultimately, Gary took the heater for the boiler apart and there was a piece of fire board (or something) that had crumbled on one end and he thinks that is where it was leaking. We now have our basement open to keep the exhaust from building up. This is a little worrisome because Terry is allergic to cats, the cat they have already is a poor mouser and we already have problems with mice every winter. Hopefully nothing larger will decide our basement looks comfy. There are raccoons, skunks, 'possums and woodchucks in our neighborhood.

The next activity was dog barf and I won't dwell on this more than to say I was worried at this point that the day was going to be really lousy! Fortunately, it turned around once I got to Manchester and got my labs. My platelets were 53 (which is higher than the 20 transfusion threshold so no transfusion), my white count was 1.05 with an ANC of 130 (too low for real food, but clearly higher than the previous 10 so next time!) and my hemoglobin was 9.0 (transfuse at 8.0 so no transfusion here either). This is tremendously good news because it meant that I could spend the day having fun with Emily instead of sleeping while she read. The other funny thing about my labs is that I drank a ton of water on the way in so that my veins would be as plump as possible. This diluted my potassium, hemoglobin, albumin and BUN. I have to figure out how to be well plumped but not too well plumped.

Emily and I then went to the Currier and then lunch with Eva at the Bridge Cafe (soup and a grilled cheese for me--soon one of their fabulous salads) and then I took Emily home and went to therapy. I had set myself up to see my therapist when I was in marrow failure depression mode, but decided it is not a bad thing for people with leukemia to talk with their therapists regularly so I kept the appointment even though I had recovered my marrow and my mood. It was nice to see her and she always has lots of practical ideas so I appreciated talking with her.

On my way home, Terry called to say that he had to go to the ED so I accompanied him there. He's fine, and says that I can tell you the story.

All his life, Terry has had horrible veins and last spring he got some pretty extensive vein surgery which really improved things. Then he got an infected clot in early June and some of you may know that one week prior to my diagnosis, Terry spent a few days at CMC getting IV antibiotics and hoping to avoid more vascular surgery (it worked). He recently took a driving trip to Nova Scotia and returned with a superficial clot and a unilateral swollen leg. His vascular surgeon's nurse told him to go to the ED and make sure he didn't have a DVT. He didn't, they gave him antibiotics and sent him home.

Which finally gets us to the part of the story I wanted to talk with you about. What happened is the nurse told him he could leave, he got dressed and we awkwardly walked out of the ED, nobody particularly said "goodbye" to us or thanked us for coming in or did the very tiniest ritual that would make us feel like the ED visit was over. It was as though we went to some one's house and said "good night" and they walked out of the room, leaving us to find our coats and the way to the door. I had exactly the same experience when I left Leb as well that the nurse pulled my PICC and I finished getting dressed. We picked up my stuff and wandered off. I felt like there was no official closure from the hospital staff. It felt as though once I was discharged, they lost interest in me. I know from being on the other side that hospital discharges are somewhat awkward experiences for the doctors; I always feel afraid to spend much time with the patient I expect to discharge because I worry I will turn up other reasons they need to stay. I wish there was some sort of tiny ritual we could do to make a clear transition between now you are a patient here and now you are out in the world.

In the clinic, it is so much easier; I say "thank you for coming in today; I'll see you in [time period]; please take this up to the secretaries and they'll set up your appointments" and gesture invitingly to the front desk. I think it is awkward in the hospital because patients may get dressed in their own clothes at the very last step just before they leave (I did in case I bled when they pulled my line). The nurse has probably already given the patient their prescriptions, paperwork, appointments, etc. and to have the nurse wait around to re-interact with the patient for a nicety rather than a necessity must feel like a waste of time. And yet. There was probably a time when discharge instructions felt like a nicety and not necessary.

Patients who are non-ambulatory get wheeled to their ride and thus get an official goodbye. I wonder if having the nurse come in and look around the room with the ambulatory patient quickly while saying the "thank you for coming in" phrase would be helpful or not. Or perhaps the nurse could return and say thank you while directing the patient to the exit.

I wonder if anyone else has this unbalanced sense at the time of discharge or if it is only me. Please let me know your experiences.

Well, I'm off to a happy platelet, go marrow, go! bedtime. I hope tomorrow is a good day for all of us.

Wednesday, August 22, 2012

really liking one's doctor

I think I've told you before how much I like Dr. Hill. The first time he talked with me, he said something to me that was exactly what I say to patients (I think I've told this story, if not, please mention it in comments and I will tell you tomorrow). I really felt like he was a kindred spirit right then and that I would be able to understand what he meant when he said various things. It has proven to be true.

I find his visits and calls so comforting and really look forward to them. The other doctors are not the same. I realized the other day that a lot of my patients feel about me the very same way I feel about Dr. Hill, except we have been together in most cases a lot longer. With many of my patients, I have had experiences as intense as what I have had with Dr. Hill. It is really surprising to me to think about things this way. To me, I am just me, not really a very interesting person, but to various patients I found their cancers, sorted out their symptoms, helped motivate them to stop drinking or take an antidepressant. In some cases, I was the first person to listen to them, the person they came out to about their abusive husband, their sexuality or their substance abuse. This is probably why I have gotten a lot of really nice cards from patients since I've been sick.

Like many doctors, I give my cell phone number out occasionally to patients, usually ones who are very complicated. The patient I am thinking of now travels a lot and is tremendously complicated and a little fragile besides. I imagined him in an emergency room in Arizona in the middle of the night with the doctor trying to sort through pages of hospital notes, office notes, CT scans, etc. I knew that if they called me it would save the ED doctor half an hour and get better care for my patient. He actually never ended up calling me, fortunately. However, this particular patient was in the seacoast, assisting a friend on a construction job and looked me up in the phone book (we're listed). He stopped by my front door just because he really wanted to see me and make sure I was OK. He told me that he wouldn't have abused my cell phone number for this since I had not given it to him for that purpose. I was very touched and since thinking more about my own patient/doctor feelings, I feel I understand a little bit better what was motivating him.

It's some pretty powerful stuff we do. I feel very fortunate to have gotten to do it and am anxious for the good Dr. Hill to get cracking at returning me to my work.

Day 67

The big excitement for today actually happened yesterday. The basement smoke detector started going off and because of the way our house is arranged, we thought it might have been an upstairs one so it took us a while of checking out all the upstairs smoke detectors to decide it was not any. I am not supposed to go into the basement because it is moldly. Emily was going to go down and check things out (we thought it was a bad battery), but the light at the top of the stairs wouldn't go on and she didn't want to go down with a flashlight. Fortunately, we rent and we called our landlords to come save the day. They replaced the battery and it stopped so they declared victory and went home. In the middle of the night (like, truly 1 am), Emily took a shower and the smoke detector started going off again. We really like our landlords so we decided not to call them until the morning.

In the morning, they were very disappointed that their fix had not fixed it, but we were starting to narrow things down to the boiler leaking. They called their boiler guy who said to check where the pipe exits the boiler and, sure enough, all the silicone around it was missing. Gary fixed  it and we'll see. In the meantime, I realized that I have been intermittently short of breath for no apparent reason (usually while sitting at the kitchen table) since I've been home so I wonder if I have been having a low level of some exhaust gas poisoning. Since I'm anemic and no one else in the house is, perhaps I am more vulnerable. At any rate, I spent most of the morning on the front porch and much of the afternoon running errands. I'll be on the lookout for repeats of the shortness of breath.

Otherwise, today was a very low key day. Maggie got groomed. I asked the groomer to trim the hair on her butt and hips because when she goes swimming, it takes forever to dry and gets moldy. Emily made fun of me and is worried that the other dogs will laugh at Maggie. We did the NYT crossword puzzle and did not particularly like it.

Tomorrow I will be visiting the NCCC. Hopefully I won't need more platelets, but I don't think it's likely. I suspect I'll be sleeping peacefully most of the day. May you have a peaceful day, too.

Tuesday, August 21, 2012

Day 66 - Shiva

Today was very fun. Ana came over and we hung out at my house and then headed up to Portsmouth for lunch, coffee and to take her to Byrne and Carlson. She brought Maggie a new toy, a pink bunny, that she really likes. She is sleeping with it now so that no potential opportunities for play are lost. We had a really nice time and after she left, just like Maggie, I had played too hard with my friends and needed a nap.

I also have a sore tooth for no apparent reason (but no fever!) which has me worried. I did go to the dentist between induction and consolidation to help avoid this exact situation, but when one is neutropenic, the few white blood cells one has can act unpredictably. Hopefully, a lot of tooth brushing and mouth wash will clear it up. The dentist was very pleased with my gums and teeth and said there was really no work for him and nothing that looked like a potential trouble spot. He has been very kind to me over the years, because I have not been the best patient, no showing or being late frequently enough that I probably would have discharged myself from my own clinic. He puts up with it somehow and after my most recent no show (about a year and a half ago), I had decided I was not going to go back because it was just too embarrassing and they called me to say "you're way overdue; are you coming in?" So, I went back and have been a model patient since then. We'll see how long it lasts. I really mean to be good; I just get going in too many directions sometimes.

Today, I got a really nice present in the mail from Rick and Betty. Rick is the chaplain from HHH who thought perhaps I was reading rodent porn a couple months ago. It was a beautiful windchime and a Shiva statue. The card with the Shiva statue says that "Shiva is known as the destroyer...Shiva destroys in order to create. Only through destruction of the old can rebirth occur and  new life begin." It is funny to read this because the first time I heard this view of Shiva was maybe two years ago in one of my favorite books "Cutting for Stone" where a character names one of her sons Shiva because of a similar feeling.  I listened to it on my ipod so I do not have a copy of it to look up exactly what she thought. (By the way, if you are a medical type and haven't read it yet, I highly recommend it. They tell me that non-medical types don't like it as much, but it might be worth a try anyway.) The Shiva statue seems very apt for me at this point and the windchimes are beautiful. I really like the present. Thank you, Rick and Betty.

In other news, Terry went on a little road trip to try to clear his head from the whole leukemia thing this weekend and darned if he didn't get to his destination and come down with a huge cold so all he could do was lie in bed, take tylenol and sleep off his fever. I am glad he was not infectious around me, but felt badly that he was sick all by himself and I couldn't help except to be sympathetic. He came home a couple hours ago and it is nice to see him for sure! He looks a little the worse for wear, but probably nothing that a few long naps won't cure.

I will be going to bed early today as well, to sleep off a busy day of playing. Plans for tomorrow are wide open. Hopefully, something fun will drop into place as it usually does. I hope for you, too.

Monday, August 20, 2012

Day 65 - more platelets at the NCCC

So, me and my leukemia's two month anniversary passed last week without fanfare. The leukemia was hoping we'd go out for a nice candlelit dinner, but instead, I spent the day attempting to scrape it out of my marrow like one would scrape gum off the bottom of one's shoe. It seems incredible that it has only been two months--two months and one week ago I thought I was a completely normal person and now I've had two rounds of chemo, a couple of nadir experiences and have learned a lot about being a patient and, thus, a doctor. It really is incredible to think about the before and the after. Terry got his last cup of coffee with a normal wife on June 15 in the morning and subsequent to that became a person who was married to a leukemic.

Today that leukemic and Emily went to the NCCC to check up on my blood. My liver/kidney labs are reported as all normal still (yeah!), my hemoglobin is holding steady at 10.3, my white count is steady at 0.45, and my neutrophil count is now 10! It was 0 last Thursday so this is a nice improvement although it has a way to go in that 500 is when I get to eat normal food again (yogurt, Bridge Cafe salad and pad thai being the most missed foods right now) and 3,000 is about normal. Once it starts coming back, however, it comes back really quickly so I'm hoping I'll be good for the weekend. My platelets were the big disappointment, however, at 6. I needed two more units. Once again, I had a four hour long benadryl fueled nap, but this time I had some other little surprises too. I think one of my units of platelets may not have been perfect for me because my temperature bounced all the way up to 100.6. Because I am at risk for infections, they cultured me up--two sticks for blood and urine, but we wrote it off to being caused by the platelets. I have had no fever since being home so I think that was a good call. I will keep checking however. Thank you, Emily, for driving me today!

I talked with Dr. Hill this evening and have great news. I don't have to go back to chemo jail until Sept 13. Ellie's birthday is Sept. 12 (9/12/01) and she wants me home for it. That means I either need chemo around Sept. 6 which is a little early or I have to wait until afterward. Waiting until afterward means I get to have an unexpected week of feeling good at home and that I get to be functional for her birthday. She said she didn't care if I was really tired as long as I was home, but I am sure she'll prefer having me energetic.

The other news is that we decided I would just get a port. Dr. Hill is not wild about ports because people with AML are prone to fevers and if I get a fever that we can't make go away, the port will have to come out (under the assumption that it would be a nidus for infection), but we decided it would be the easiest way to go since I seem to be doing really well in the fever department. He will get it scheduled the day I go back to chemo jail.

Gosh, you might be wondering what a port is. A port is a little implantable device that goes in a patient's (usually) chest, implanted by a surgeon or an interventional radiologist. One end of the port goes just under the skin and the other end is sewn into the side of a big vein. The end under the skin has a little rubber area that people who know what they are doing (usually nurses) can push a special device into and access the vein. This is nice for people who would normally get stuck over and over (like me) and because it goes to a big vein, it is convenient for putting chemo in as well.

You may have noted that Ellie was born the day after 9/11. I remember lying in bed on 9/11, 9.5 months pregnant and Terry telling me about it. My first thought was that I had misunderstood, it was some kind of horrible joke, and my second thought was that I hoped I didn't have the baby that day. I was quite happy to have her on 9/12. In a way, 9/11 is on of those events that changes everything suddenly and it seems meaningful that she was born right after it, rather than right before it--like she was part of the new world that was coming into being on that day. It was also nice to be able to call everyone up and say, "I've got great news! It's a girl and we're both doing fine!" More than one person commented how nice a change it was to hear some happy news.

Other news from me for today is that I walked 1.3 or so miles this evening and am going to bed now. Sweet dreams to all and to all a good night.

Sunday, August 19, 2012

Day 64 - the latest anxiety dream

Sunday was nicely relaxing. Tommie spent the morning with us so we attempted to tire out the dogs by swimming them, then bought more peaches and potatoes (the last batch disappeared quickly and really I don't think it's possible to have too many). Tommie had to leave to beat the traffic and then Emily and I went downtown to try out the new coffee store (D2 Java--recommended) and stop by the bookstore (John Irving has a new novel out). We came home and spent a couple of hours--maybe more--wrestling with Saturday and Sunday's NYT puzzles. We've never been brave enough or felt leisurely enough to do them before and we did need to use The Google, but we got them. Then dinner, a 1.8 mile walk and weaving for me. Nothing of any real consequence happened today, just a lot of hanging out: an ideal Sunday.

Not last night, but the night before I had another anxiety dream. They seem to appear around two weeks after chemo and then go away when I do the next round of chemo. If I understood my psyche, I would probably be a much happier person; maybe they are bone marrow dependent and not related to anything in my head. In the most recent one, I was parking a car in front of a hotel and everything was in the wrong place with it: the gas was on the dashboard and the brake was where the gas pedal normally is. After a bit of a struggle and some damage to the cars parked ahead and behind my space, I got the strange little car parked. Then the bellhop walked up to my car and told me that he and the driver of a Brink's truck that was double parked in front of the hotel had decided that the Brink's truck was going to park where I was so I had to move. I told him "no." That seems like a promising anxiety dream. I'm not going to let something (the leukemia perhaps) push me around evidently.

I'm off to bed, hopefully to have pleasant dreams. Hope yours are, too.

Saturday, August 18, 2012

Day 63

Another quiet day, spent with my sister in law, doing all the miscellany of home life that is so satisfying to do and so boring to read and write about. We went to the Beach Pea (if you've never been there, make a day trip to Kittery to try it out--the croissants, salads, cupcakes and eclairs are so good you'll be glad you did), to my favorite farm stand (to buy Yukon gold potatoes and peaches), took the dogs swimming in the river and made mashed potatoes. Things are actually starting to taste like they are supposed again which is a very pleasant experience. The mashed potatoes with their buttery goodness, the cauliflower, yum. If nothing else, chemo makes one appreciate the way normal things taste. I also ate a peach and an apple. They did not taste right, but tasted delicious anyway. This was good because they were a lot of effort for me to prepare so that they were safe for me.

The taste thing is funny. I get randomly through the day these terrible tastes in my mouth and find a bowl of potato chips is required to get rid of them. Sweet things still taste wrong and eggs (which I do not like much unless I have chemo-tongue) are starting to taste unpleasant again.

I had a weird little episode this morning where I got out of the car and was a little worried I might pass out. It passed and we continued about our business and then when I got home, I felt it again. I checked my blood pressure and it was like 96/60 which is actually normal for me. Since it only happened when I stood up, I figured I was volume depleted and started drinking water. I have no idea why, but I seemed to be down about half a gallon. No signs of bleeding, no edema, no shortness of breath, no diarrhea, no excessive sweating, no fevers, just missing a fair bit of fluid. Maybe my marrow was sucking it up as it continued re-awakening. I've been fine the rest of the day so it's a mystery.

Tomorrow is planned to be similarly dull which is actually OK by me. If you want interest, I hope you have it. If you are like me, and prizing the ordinariness of your days, I hope you get that.

Friday, August 17, 2012

Day 62 - turning on the marrow/auto transplants

This morning when I woke up, I felt as though in the night someone had found my "on" switch. Since being home from consolidation, I have been a little slow, depressed, fatigued. This morning, I woke up and felt energetic and ready to do stuff. I went for a one mile walk with the dog before Emily even got out of bed. I wrote Ellie a letter and walked back out to the post office to mail it so she'd get it sooner. For my third activity, I walked downtown with Emily for chai. I did some weaving. We got a letter from Ellie today requesting some chips, her robe and other stuff so I went to the grocery store, the drug store and then to the post office. I wanted fried seafood for dinner so we got take-out from Al's. So, you can see that I was pretty active today.

Ellie's letter is so cute that I'm going to type some of it out for you:
Dear Mom/Dad/Emily,
Camp is amazing! Today alone I saw the lake and mountains, saw five people cry, and helped choreograph and write 2 songs and (again) we came up with cabin Ossipee's slogan "Wear your pants with pride!" (it's a long story!) -Ellie J Braun
p.s. I'm coming back next year!

Since we're on cute, here is a cute picture of Maggie.
You know you want to give me some of that chicken.
Since there's not a whole lot of news from here for today, I'll give you the scoop as I understand it on bone marrow transplants. There are two kinds of transplants: allogeneic and autologous.

An allogeneic bone marrow transplant ("allo") is the kind you've probably heard of. I am not a candidate for this because the markers for my leukemia indicate that it is likely to respond to chemo alone so I don't need this super aggressive treatment. What they do is find a donor who is a good match and collect some of their hematopoetic stem cells (the cells that make blood). They used to do it by taking it out of the donor's bone marrow like a super huge bone marrow biopsy, but now I think they give the donor an injection of something that makes the bone marrow leave the marrow and circulate in the blood. Then they filter a bunch of it out of the donor's blood and prepare to put it into the recipient. In the meantime, they give the recipient some chemo so that there is space in the marrow for the new stuff to come in and then they infuse the donor cells. They magically find the marrow and set up shop there. I guess it can take a while for the donor marrow to get established and while it's doing this the patient is even more vulnerable to diseases than when they were neutropenic from chemo and they feel even worse than they did when they were neutropenic. However, once the new cells gets established, the cool stuff begins: the donor immune system goes out and attacks the recipient's leukemia. The patient has to be carefully balanced so that the new immune system is strong enough to recognize the leukemia as foreign and kill it, but not so strong that it attacks the donor's skin, liver, esophagus, etc. Getting the balance right can be super tricky evidently and some people are stuck with a certain level of graft versus host disease. When they first started doing bone marrow transplants, they didn't understand that benefit of having the immune system killing the leukemia. How they figured it out was that when people with an identical twin got transplanted from their twin, they relapsed much sooner than people who didn't have such perfect matches available. So now, even if you have an identical twin, you get a different donor. The patient needs to be on lifelong immunosuppressants that need to be titrated up or down based on how much anti-leukemia effect is needed. That's the kind of bone marrow/stem cell transplant that I am NOT being offered (but aren't you glad I told you about it?).

The other kind of transplant is called an autologous ("auto"). This is a kind that may be offered to me. What happens here is they would give me the shot that makes my bone marrow take to the blood stream, filter my blood to take out the stem cells and put the rest back. The leukemia cells are a different size than the stem cells so they are easy to separate (so they tell me). They would then take the stem cells and store them somewhere (I imagine a special freezer with rows of ziplock baggies filled with red gelatinous frozen stuff all lined up, labelled carefully). Next they would give me enough chemo and radiation to wipe out my bone marrow completely. When my counts drop enough or maybe when enough time passes or when I feel really really cruddy ("nope, not ready yet, she's not miserable, just uncomfortable"), then they would "rescue" me with the saved up bone marrow. I guess even though it would be my marrow that had been comfortably churning out cells in me until a few days before, it takes a while for it to get comfortable and begin doing its bone marrow thing again ("become engrafted"). The patient feels really miserable while this is going on, but the misery doesn't last as long as it would for an allo. When the cells are happily functioning, the treatment is done; there are no lifelong immunosuppressants or even special precautions needed. This might be done instead of the last round of chemo.

The idea is that the auto probably works better than just regular chemo, but does take an extra month in the hospital and takes a lot out of the patient. Dr Manno says that people tell him it takes six months to feel totally normal again after an auto. If I could predict the future, I could tell whether or not I would relapse without an auto or even with an auto (in which case I would need an allo) and then I could choose the best route. My oncologists tried to predict the future as much as they could by sending off some markers and looking at my chromosomes, etc. Fortunately, my markers were not the really bad kind (if they had been bad, Dr. Hill would have encouraged an allo already), but unfortunately, they were not the really wimpy leukemia kind either (in which case, he would have said just do chemo), but they fell somewhere in the middle ("indeterminate"). So, it's clear as mud (isn't that the way these things usually go?). I'm not on top of the data for myself yet and Dr Hill has not gone over it with us yet either so I don't have numbers to tell you about. 

For now, I have another round of regular consolidation planned likely in early September and then I think Dr Hill, Terry and I will have a serious discussion. Stay tuned.

So, that's a lot of information for one night. It's raining here in the seacoast and I'm looking forward to a cooler day tomorrow. I hope we all enjoy this weekend and its weather.

Thursday, August 16, 2012

Day 61 - platelets at the NCCC

Most of today passed in a benadryl induced haze for me. It turns out my platelets were 5 (normal is around 150-400) so it was good that I had gone back for those labs. It turns out that the blood from the redraw Monday went to Atlanta and the Red Cross did their thing and found two units to send to CMC for me. Both units were well matched and I did not have any problems so double yeah! The nurse said she was not sure, but thought that one of the units looked like it came from Washington, D.C. and she could not tell about the other. Well travelled platelets.

At one point, my resident in Lebanon told me that the Red Cross had actually told at least one of the donors of platelets for me what my chemo schedule was so that they could plan to donate at times that I was likely to need their platelets. I am totally blown away by the generosity of a person I've never even met several states away scheduling a recurring, 1.5 hour long appointment so that I, a complete stranger, can have their platelets and tolerate my chemo safely.

The rest of my labs are white count 0.57 (quite low, all lymphocytes), ANC 0, hemoglobin 10.8 (just a little low, but nowhere near needing a transfusion), liver and kidneys totally normal. This is about where one would expect me to be two weeks out from chemo.

First I got to see Dr. Manno who was, I think, pleased in general with how I'm doing. Then, I went to a little room and got my platelets. The NCCC infusion room has a big communal room where people usually get their chemo/blood and a few smaller rooms. Because I was not 100% certain that the platelets would go well and the idea of having rigors in front of a bunch of other people, some of whom might be my patients was more than I could take, I asked for a room. Now that it's gone well once, I feel more confident and maybe I could just use the common area, but I think it's nice to have a little privacy. We'll see how I feel next time.

The actual transfusion went completely without a hitch. The bags arrived in Manchester, went up and went in without any problems. Because I am so good at immune reactions to platelets, I got benadryl and tylenol beforehand with the predictable response (I slept for three hours). Terry sat in the room and computed while I snored quietly. He also had a chance to sample CMC's delicious egg and bacon sandwiches as well as check out the Double D. I hadn't really spent much time at the NCCC since my diagnosis so it was nice to see some of the staff that I used to work with and hear their news. Fortunately, there was no one with news as badly dramatic as mine. There was a little bit of happy dramatic news, but it's not mine to tell.

The plan is for type and screen on Saturday so that platelets are ready for me if needed and then check my numbers on Monday.

The rest of today was really minimal as getting platelets took 6.5 hours by the time one adds in travel time, but we did today's NYT crossword puzzle and thought it was good except the cluing needed some help, like this would have been a really good puzzle for the constructor to have a partner to spiff up the clues. Terry and I also walked downtown and by the river. It was wonderful to see how many people were out strolling by the river. I bet we saw 60 people just out walking, getting ice cream, etc.

I'm happy to have some platelets and feel much safer now. Wishing you what you need to feel safe.

Wednesday, August 15, 2012

Day 60 - tiny thoughts

I think I've talked earlier about meaning-making and life threatening disease and how I've observed in my work that really there is no future in dwelling on "why me?" or any other question about the situation beyond "what meaning does this have for me?" The obvious potential meaning in having AML and the experience of being a patient after a very long time of excellent health is that this will make me a much better doctor, especially given my work in hospice and palliative care. Hey, just look at today's other post--I understand chemobrain in a very personal way that I would not have before June 15. You may now, as well, too.

Other activities for today were pretty minimal. I caught up on the NYT crosswords as we didn't do Tuesday's because of dropping Ellie off at camp and then we did today's too. Emily and I both agreed that today's was a top flight puzzle. If you only do them from time to time, go find today's and do it.

We took Emily's car to the shop because it still does not seem to have a functional overdrive and Terry and I went grocery shopping. I did some weaving and spent a lot of time on PubMed reading about cancer survivorship (that's the fancy term for chemobrain and all the other long term sequelae of cancer and its treatment). A well spent, if very small scaled, day. I hope yours was well spent and scaled as you wish.

Day 60 - chemobrain

Hey, wanna learn about chemobrain? I thought so. It seems I may have it, but what exactly is it? I spent some time researching it today. It turns out that "chemobrain" was coined in about the 90's (at least in the literature) to refer to the mid to long term cognitive impairment that patients who got chemo (mostly for breast cancer) subjectively reported. It is a separate entity from what I have which has not lasted long enough and is not far enough out from chemo to be officially chemobrain.

The fancy names for the fuzzy headedness that goes with chemo are "chemo related (or induced) cognitive impairment" (CICI or CRCI). The milder short term stuff that I have seems to be called "a side effect." Not all types of chemo seem to cause the long term effects and it seems that what I have gotten (daunarubicin, cytarabine) is not on the lists that I have found. The worst agents seem to be those that cross the blood brain barrier and those that are associated with ablating hormones (anti-estrogens, treatment for reproductive cancers). All of this is good news for me.

The symptoms typically associated with chemobrain are: difficulties with hind/fore sight and judgement, problems following conversations, concentration problems, word finding, retaining things one read. I find following conversations and general processing speed to be my biggest problems. I think I can concentrate and retain new material OK. I think my judgement is not impaired. I have noticed some word finding problems, but can still do NYT Thursday crosswords so it can't be too bad (I never could do the Friday ones).

There is no real agreement on what causes it, how common it is, how to measure it or identify if a particular person has it or how to treat it. People do studies where they have people who identify with chemobrain take various batteries of cognitive tests. Sometimes they find impairment objectively, sometimes they don't. This could be because we're not having people take the right tests, it's too subtle to show up on tests, we're not testing the right people, etc. Interestingly, despite not really having a good idea of what it is or how to measure it, many sources of information state that the prognosis is good and most cases resolve spontaneously within five years. This would be an example of pre-mature reassurance in my book. It could be that they are saying that the people who will tell you one year out that they have CRCI will tell you five years out that they don't any longer. That seems like it would be an OK thing to say although not really very intellectually rigorous.

I was very worried that this new, slower version of my brain was going to be permanent. I imagined that I would not be able to go back to being a doctor and that something would have gone wrong with my disability insurance and I would have to work at a job or two just to keep food on the table--maybe I'd have to work cleaning my old office or stocking the shelves in the local pharmacy. The whole not thinking well experience is quite scary. My brain feels like the most vulnerable part of my body. I found it extremely reassuring to know that my brain function is likely to return to its pre-morbid levels given the agents I got and the disease I have. Here's hoping it's true.

Tuesday, August 14, 2012

Day 59 - other parts of the team

I was so upset about the extra trip to Manchester yesterday I neglected to tell you about my visit to the pharmacy where I learned many interesting things, not all of them true.

A family member has a moderate allergy to an ingredient commonly used in pills as a binder. Their doctor gave them some samples, but guess what? ingredient X was present in the small print. Try number two involved writing a prescription for a similar medication, but some detail was not done correctly and my family member got their med with ingredient X, despite having asked the pharmacist to ascertain that there was no ingredient X in the pill. This was sounding like a job for off duty doc.

I went to the pharmacy and spoke with the pharmacist. My first surprise was to learn that she did not believe sorting out which formulation of a medication contains which ingredients was a pharmacist's job. I disagree. It is impossible for anyone else to know which brand of generic a particular pharmacy is carrying at a particular moment in time. Without knowing the details of the brand, one cannot determine the ingredient list. If a patient has an allergy, the pharmacist is the one person in the team who is able to tell exactly what is in the pill and put that information together with what the patient is allergic to, in order to make sure it's safe for the patient. The alternative of the doctor calling the patient's pharmacy and asking which manufacturer of a generic the pharmacy is stocking now, looking up the ingredient list and then sending the prescription is preposterous.

The pharmacist then pulled out the package insert of the name brand version of try #2 and brought it to me to look at. It looked OK so I noted that we would ask the provider to write a prescription specifically for that medication. The next piece of information I learned is that the name brand works better than the generic anyway. I would agree that there are cases where generics and name brands are not equivalent (generics are actually only required to be within something like 20 or 30% of the name brands so for carefully titrated meds this can be a huge problem--seizure meds, warfarin, thyroid meds being the prime examples), but I would disagree strongly with the blanket statement that all name brands are better than all generics. I also happen to know this medication quite well as a prescriber and know that there are not issues with the generic. Having a pharmacist dispensing mis-information about medications is not helpful. My insurance has some kind of financial incentives for us to use this particular pharmacy. I think I know how this pharmacy was able to under-bid the competition--by hiring pharmacists who barely passed their boards, evidently.

I actually didn't say anything to her about either issue because I feel somewhat slow and didn't really fully get what she was saying until two or three exchanges further down the conversation. I think I need to either get comfortable saying, "wait a minute, did you just say blah blah blah" or to metabolize off my chemo more effectively. I'm guessing my behavior will be easier to change than my liver so I'll have to get started on that. It's actually not something I'm enjoying to be a little duller, slower, having a harder time figuring things out. I worry that the new chemo addled Mary is going to be the permanent one. They assure me that one's brain recovers from chemo eventually. I am looking forward to seeing it for myself.

In other, less whiney news, we dropped Ellie off at camp today. It looks really nice and the cabins have running water. The lake is beautiful. I will miss her a lot--in fact, I miss her already. This is her first sleep away experience for more than one night without any family. She has been away from me this long before, but she was traveling with Terry then so this is really different.

Diane came over for dinner and hung out for a little while today. So nice to see her.

Can't think of any other items of interest at this point so I will wish you pleasant dreams.

Monday, August 13, 2012

Day 58 - wasting time on the highway

Got my labs today. They are exactly in order for some one who had HIDAC one week ago. My hemoglobin is 11 +/- (basically normal), my platelets are 35 (low, but not ready for a transfusion yet), my ANC is 60 (really low, but that's kind of the point). My liver and kidney labs are reported normal, but I do not know the details.

The overall idea of what is happening in my treatment these next couple of weeks is that my body is recovering from the chemo. Hopefully any microscopic leukemia that is still left around has been killed off nicely as have some of my normal cells and they are working on recovering. It is expected that I may need transfusions of platelets and red cells during this time and the idea is that I had my labs checked today to see if I needed a transfusion and if I did, they would give it to me today or tomorrow (depending on how easy it is to get the blood ready for me). The day started really smoothly; I got a call from the nurse before I even got home telling me my labs and that I didn't need a transfusion. I got a call from one of my doctor friends telling me the same (you know, belts and suspenders). I was happy and impressed with how well things had gone at this point, but the post is clearly much longer. Now, the complaining starts.

Just as I was sitting down to lunch, I got another call. The nurse told me that I had a lot of platelet antibodies and in order to crossmatch me successfully, they'd need me to come get some more blood drawn.

First, no kidding I have a lot of platelet antibodies. In fact, I spent five minutes sitting in the chair this morning while the blood drawer called over to the blood bank to remind them of this and make sure that we were drawing the correct panel of labs. They concluded that she should draw an extra lavendar tube besides the typical crossmatch labs that were already ordered which she drew. Turned out I needed two reds, not spun. Who knew?

Second, I live over half an hour from Manchester. This means that it takes me an hour plus the time to wait and get my labs drawn round trip. My family is worried that I am not the world's safest driver right now and didn't want me to drive unsupervised to Manchester. It was not a good time for some one to accompany me. Terry was trying to work and couldn't really leave his studio (he already did the Manchester trip once today). Ellie had a friend over and if Emily went to Manchester with me, Ellie's friend would have to leave. Getting back to Manchester was a huge inconvenience and a big waste of time.

Third, my need for additional crossmatching labs was highly predictable (in fact, I predicted it) and I don't really understand why they weren't ordered. It's not really my job to make sure the right labs are ordered, but I tried. I am not sure what else I could have done.

Fourth, the nurse who called me did not apologize to me for the inconvenience, time, an extra stick.

Emily and I drove to Manchester, I got the labs and the woman who drew my blood (who had absolutely nothing to do with incomplete orders being placed earlier in the day) apologized to me. The fact that she was sympathetic with my wasted time, gas and extra stick helped a lot.

Guess what? I have a bruise from this afternoon's labs, too--an extra bonus. I think I understand what happened largely. When I left Lebanon, the residents who did my paperwork were different ones than the ones who took care of me with my platelet problems so they did not remember my antibodies and did not write orders for the correct labs for me one week post discharge. I had benadryl the morning of discharge (and as I've already noted, it's not really the patient's responsibility to make sure the right labs are ordered) so my radar screen was not even operational, to say nothing of whether or not discharge planning was on it. I sent a "myDH" message to my docs in Lebanon asking them to make sure the right labs were ordered but never got an answer. Maybe something went wrong with myDH? I don't have enough insight into how things work in Manchester to know what went wrong there.

Clearly, the overall problem was with continuity of care, none of my docs really "owning" me. I'm not sure where the most useful point in the system will be to push to get this straightened out, but the more work Manchester and Lebanon do collaboratively the more important this will be to get right.

I do really want to point out though that the apology of the phlebotomist at CMC made a huge difference to me. First she listened to my complaints (which mostly consisted of having spent over two hours in the car driving back and forth over something that I specifically asked ahead of time to be sure was arranged correctly). Then she agreed that it was a huge nuisance and said she was sorry. That's it. "What a nuisance. I'm sorry." It helped incredibly. I recognized even at the time that she had nothing to do with the mistake at all, but I am just surprised at how much her apology helped.

On to more mundane topics. I did a little shopping and a little walking in between driving to Manchester, making lunch for Ellie and her friend, getting Ellie ready for camp and etc. Nothing too exciting, camp stuff and some miscellaneous presents to send to our friends in Japan. Also, some altoids which it turns out taste disgusting at this point.

The difficulties with eating continue. When I note I'm hungry, or that a particular food item sounds like something I might like to eat, here is what I have to think about:
1. does the food sound good because it sounds good or does it sound good based on 47 years of history? For instance, ice cream sounds good to a deep part of my brain, but if I actually think about what it tasted like the last time I had some, it does not sound good. It's way too sweet.
2. will my stomach/guts be able to handle this? (self explanatory--see previous entries)
3. is this on the neutropenic diet? (fresh fruits and vegs have to be cleaned well enough that it just hardly seems worth trying to eat them, lots of my favorite cheeses are out, multi-use condiments, yogurt with live cultures, deli counter things, anything I am not positive has been cooked properly are all out)
4. reconsidering the weird things that my taste buds seem to be doing on the particular day in question, does it really sound good?

A lot of the time, I end up deciding that what I really want is a nice glass of water and a piece of toast. Another week or so and things will start tasting better and the neutropenic precautions will be lifted. Then I'll be able to eat all the raw oysters and half cooked chicken I want.

Here's hoping we all keep away from food borne illnesses and time wasters.

Sunday, August 12, 2012

Day 57 no news today

Not much to report here. Another quiet day. I was incredibly tired this whole morning, like I felt overcoming gravity to raise a cup to my mouth required a lot of effort. Unsure why it started or why it left, but it did indeed leave after a noon nap and then the rest of the day my energy was pretty normal. I cooked macaroni and cheese from scratch, did a couple loads of the ever present laundry, went grocery shopping, wove and am not too exhausted at the end of the day.

Yesterday (a full 3 days after my last dose of chemo), I woke with a cytarabine rash. It moved around, thighs, calves, antecubital fossae and then faded mostly. There was a midnight recurrence last night, but none today. The poor dog does not like the taste of sarna lotion pretty clearly. She licked my knee indiscriminately this morning as she usually does to greet me and stopped in midlick. I feel a little bad to think this, but it was kind of funny.

We went to the gas station and you're probably not surprised to know that I know the guy who usually pumps for me by name. We hadn't seen each other since before my diagnosis so I had to give him the scoop and I am sure he just didn't know what to say, but if one does not know anything about leukemia, it's ok to say so. A worse option is to mention distant relatives who died from leukemia even if it was decades ago. This is a particularly unwelcome conversation to have in front of my children. He's a nice person and I know didn't mean anything badly, but let's try harder next time please.

That's all the news from here. Perhaps your life is more interesting than mine today. This may or may not be a good thing. Hope it's all good.

Saturday, August 11, 2012

hospital sleep and diagnosing diabetes

I have time to read the journals so you don't have to. I wanted to recap two really interesting articles in the most recent Annals for people who might not get a chance to read them.

The first is kind of a geeky article about diagnosing diabetes. I'm not sure why, but I have always found this a really interesting issue. The lab test used for monitoring one's sugar level is the a1c. When exposed to sugar, red blood cells do this little chemical reaction and by looking at how much of the chemical reaction has happened to the average red blood cell, you get a good idea of the average sugar level over the lifetime of the red blood cell. Red blood cells last about three months on average so the a1c is an indicator of what your average sugar has been over the past three months. Diabetics monitor their sugar at a particular moment in time to figure out what to do with their meds on a day to day basis, but doctors monitor the a1c to see how the person is doing overall.

When I was a resident, officially, one could not diagnose diabetes by checking an a1c, only by catching or inducing an elevated sugar. The a1c could only confirm diabetes and then monitor it. This was largely a historical thing (I think) and struck those of us who trained in the late 90's/early 2000's as dopey and lead to lots of glucose tolerance tests which require several blood draws, drinking a disgusting sugar load, two hours of time and, I bet, more money than an a1c, but I digress. A few years ago, the definition changed and we could diagnose diabetes with an a1c, but the level of a1c that was high enough to call diabetes was not really clearly defined. Most people said 6.5, but there was a lot of controversy about how strictly diabetes should be controlled--some studies said that some patients whose sugars were controlled to normal levels actually did worse than similar patients who were allowed to have slightly higher sugars. Maybe we were now in the position of telling people that their a1c was 6.7 so they had diabetes, but that their a1c was about at goal so we didn't need to do anything differently. Complicating the whole picture is that there may have been some evidence that treating "pre-diabetes" like diabetes delayed the onset of diabetes so some doctors treated their pre-diabetic patients. (There was also some thought that treating pre-diabetics with diabetes medicines postponed their diagnosis of diabetes because it lowered their sugars and that's how you diagnose diabetes so it's a bit of a recursive loop.) Are you getting the idea that it is a messy situation?

Enter more confusion. You may know that African Americans tend to have higher a1c's for the same level of sugars and so there has been some thought that the a1c used for diagnosing an African American person with diabetes should be a little bit higher than the a1c level used for a person who was not African American. Is this clear? I hope so, because here is the payoff: this recent article in Annals looked at a1c's and rates of early diabetes complications sorted by African American / not African American. They found that African Americans have a higher rate of this one particular complication for the same a1c level, making their suggestion be that African Americans should actually be diagnosed at a lower level of a1c. Whoa, huh? I think the whole issue of what's real (diabetes as a construct) and what are the outcomes we care about (complications) is really interesting. I really enjoy thinking about the relationship between where one diagnoses diabetes and rates of false and true positives. The fact that one can subdivide patient groups and get different sorts of answers is an extra interesting spin on the whole puzzle. OK, geeky.

hospital sleep article

OK, you didn't read all that self indulgent drivel about diabetes, did you? Good, don't waste your time. This is really interesting. Also in Annals, they recruited 12 healthy young people and then deliberately disrupted their sleep with typical hospital sounds. Guess what? typical hospital sounds at typical hospital volumes were disruptive. There is an older study that monitored patients in a CCU during a period of bad acoustics and then changed the ceiling tiles and did it again. Their results showed that "adverse acoustic environments are associated with higher pulse amplitude at night and elevated use of beta blockers. the patient group exposed to the unimproved acoustic environment also demonstrated higher rates of rehospitalization and poorer ratings of quality of care." Some things to make the environment quieter are so easy and of course better sleep leads to better outcomes. Wow! Now that it's been pointed out to me, I'm surprised that every hospital doesn't have a Better Sleep Committee working on these issues.

Day 56 - an important announcement

First off, here's some visual variety and a chance to build the suspense. My friend John Barger took this photo of me at the hospital last week. I really like it although one does wonder about my slightly disconjugate gaze.

So, last night, I went to bed and found myself thinking that no one was really talking with me. The thinking part of my brain pointed out that that was stupid (it's sophisticated that way) because I am surrounded by people who talk with me. Then I started to think more deeply about what I meant by that and realized that there is a certain type of communication that I am not getting and feel the lack of: the doctor/patient stuff where I am on the doctor end. People have asked me if I missed work before and I can agree intellectually that I do and certainly I miss my co-workers and my patients (and worry about them), but last night at bedtime, for the first time since going on leave, I felt that I missed work.

I went on leave June 15, 2012 and yesterday was August 10. It officially took me eight weeks and one day to miss work. Who won the kitty?

Friday, August 10, 2012

Day 55 TMI, d'oh! and Exeter

So, today I will eventually get around to talking about the Exeter hep C situation and why yesterday was a hard sort of day for me, but in order to get there, I will need to discuss a topic that for sure qualifies as Too Much Information. If you are worried that the payoff of hep C and what the doctor/patient discovers about her mood is not worth hearing about colons, then today might be a good day to skip out of the blog early. It's ok; if you change your mind, you can come back tomorrow; it'll still be here. I don't know why I can't get the jump to work now.

Thursday, August 9, 2012

Day 54 - all quiet at home with an update

Today could really be described as the pinnacle of domesticity for me. Here is my entire day's schedule: wake, email, sudoku, breakfast, hang out with family, shower, nap, lunch, walk 4 blocks to/from bookstore, nap, crossword puzzle with Emily, dinner, blog, hang out, bed. It was a lovely, tranquil day, filled with lovely, tranquil moments, and quite tiring.

I seemed to be thinking almost adequately and with Emily's help, did the Mon, Tues and Wed NYT crossword puzzles of this week so that is a good sign. I got some that she couldn't and she got a lot that I couldn't--about like usual--so I think my brain might be coming along. I managed to make edible macaroni and cheese for Ellie in the evening but in the morning I forgot to check if the beans were actually cooked before I took them off the stove and mixed them with the rest of the soup. Ah, well, I did manage to turn the stove off. Perhaps tomorrow I will be more in tune with the practical world.

My only other comment today is that I got more billing from my insurance company. They don't seem to want any money (which I am grateful for), but they did send us about 12 pages of paper that say things like, "according to the terms of your plan, these services are not covered without a referral from your primary care physician (PCP). This claim was submitted without a referral therefore no benefits are available." I am sure that anyone who has dealt with health insurance companies before will not find this surprising, but the last time they sent me this stack of papers, I called and they assured me they had the referral. Curiouser and curiouser.

I am going to put Ellie to bed soon and then go myself. Hopefully tomorrow will be more energetic than today for me. For you, I hope you have the level of energy you want, too.


Info for doctor geek friends: I just realized that my ECOG is 2 and my PPS is/was 60. Somehow, "got store and rest stop confused" has much more wiggle room in it and more space for humor, and explanation than "PPS of 60." Every now and then, a little piece of "I have leukemia" gets in and surprises me. I think one did tonight.

Wednesday, August 8, 2012

Day 53 - the triumphal return home

It was sure nice to get home again. Evidently, I was more tired than I thought I was because I asserted that rye liquor was made from potatoes and I tried to walk into the men's bathroom at the rest stop. Nothing a three hour nap can't cure (or at least help). I did have a nice nap and things seemed much better. I sorted a little bit through the mail that came while I was gone, including the final shirt from Nordstrom and then played "Angry Birds" and other computer games with Ellie for a while and ate yogurt and a peach, neither of which tasted good. It is especially sad to me that the peach tasted wrong because peaches are my absolute favorite fruit (and maybe favorite food item) in the whole world. Right now, only water tastes good, but I did this before and know it gets better eventually.

I do not have any planned medical visits for several days now. I go visit the Norris Cotton (in Manchester!) for labs on Monday, but none until then. Currently my labs are all pretty normal: platelets 146, WBC 2.9, hgb 11.5, ANC 2,630. If I understand correctly, my white count and maybe my red cells will plummet over the next few days but my platelets should hold out OK (although my platelets are so wacky who knows what they will do). As my white count drops, chances are I will feel less energetic so there may be more napping and less blogging in my near future. Hopefully there will be no more attempts to walk into the wrong bathroom.

So, let's talk a little more about doctor/patient relationships. When I was a student, I did not understand that when I went off service, people would want me to say goodbye. I would figure that I wasn't really doing anything for them so why would they care if I was there or some other student was. When I went off service, I would not say goodbye or even let them know usually. I cannot believe I behaved like that, but I didn't know better and no one actually taught me until about partway through my first internal medicine rotation, I saw my senior resident say to a patient, "I just wanted you to know I'm going off service tomorrow and you'll have Dr. Smith instead of me. You'll like her." OK, then, that's how it's done.

It surprises me that not everybody does that; we're actually not interchangable and the relationship matters. For all of us.

I am going to take my again tired little self up to bed. I suspect I will enjoy tonight's sleep and hope you sleep well, too.

Tuesday, August 7, 2012

Day 52 - day 4.5 of 5 for consolidation #1

Some of my long time readers (ok, my family) are finding the numbered days hard to keep track of so I will try more lively titles and see how that feels. I could also try sprucing things up with more pictures, too.

This little masterpiece was painted just today by me and is of the view of my window, bookshelf and outside. It's sort of recognizable, but it turns out the whole perspective thing is a lot harder than it seems intellectually. Here's a photo taken a couple of hours later of what I was trying to paint.
One can kind of see the similarities. Kind of. I guess I'll keep the day job.

So that is an interesting question: what is my relationship to my work right now? As I am starting to get a little distance on it, I can see that I have been curled up around myself, protecting myself, just doing my leukemia stuff. Now, I'm a little better and I feel a little more out in the world, no longer like the only thing I can do with myself is to protect and heal myself. But I am not ready to be out in the world completely. I think when Cara asked if I could see the light at the end of the tunnel, part of why I couldn't is because it is too scary to. It's really nice to be in this place where I am monitored closely, my bone marrow is constantly peaked in at and the leukemia is beat back repeatedly. At some point, I'll have to turn my orientation around, face outward, and trust that the leukemia only needs occasional monitoring. I have felt badly because I'm not really all that interested in going back to work yet, but I think it is not reasonable to expect myself to be interested yet as I am still actively involved in killing leukemia cells.

In my mind, I started out June without leukemia. Then I spent June and July integrating "I have leukemia" into my view of myself. Perhaps August will be about turning down the volume on "I have leukemia" and finding the knobs that say other things.

Wanna hear some thoughts about teaching rounds? I thought so. I have had a whole bunch of attendings round on me by now and they all do it differently. They also do it differently during the week and on weekends and I have had lots of both kinds of days. Some round with the whole team (intern, resident, fellow and attending) which can be really overwhelming; not much chance for an intimate conversation with anyone if there are three other people standing around. Also, hard to find four chairs so everyone just stands around, looks awkward, does their thing quickly and gets out. The advantage is that it's quick for everyone--none of those pesky conversations need be had. Also, if people are really good at patient interactions or if a patient has a really interesting physical finding, this method maximizes the chance that everyone gets to see it, and increases the modelling opportunities for learnees with good attendings. Let me stress, however, from the patient's point of view--unless everyone on the team is devoid of personality and one wants to get the team gone as soon as possible--it's not the nicest method or at least not exclusively.

On the other hand, having each team member visit individually can be kind of wearing too. As noted above, there are four team members and having each one come in separately and ask the same questions, do the same exam can be a little tiring. This method makes for really nice conversations usually and it often feels sad to me that no one is able to learn from them besides me and the person I'm having them with.

It is almost always the person with the most seniority who speaks to the patient and this should also be varied. It is good for the junior people to get some supervision interacting with patients while it's also good for them to see the more senior people who presumably are better at it interacting too.

Some teams will round with two small groups: attending/trainees; attending+intern/fellow+resident; etc. I think mixing it up frequently so that the advantages of all the different methods are available is the best plan. I think that having people round in whatever format makes them least comfortable is probably a good experience while in training too. The quiet one who prefers not to lead the conversation should be getting the practice leading, the chatty one who doesn't like so much to listen should be getting some practice there.

Two doses of consolidation #1 left for me. This dose I get to sleep thru and tomorrow's dose I get to go home after. I'm off to brush my teeth and get my benadryl. I hope you have pleasant dreams.

Monday, August 6, 2012

Day 51

Today was another pleasant and quiet day. I got chemo in the morning with benadryl so I enjoyed a nice little morning nap. However, the number of people who interrupted me was phenomenal: rounding team, nutrition, dietary x 2, housekeeping. Nursing and aids came in to check on me, but didn't wake me up to make sure I was sleeping comfortably which I appreciated. At the end, when I was almost ready to wake up a volunteer I am quite fond of came in to chat so I did rouse myself completely and we chatted awhile. I went for a walk outside around the hospital three times which my iphone says is three miles and then returned to reading, computing, etc. Sadly, one of my resident friends from last admission came by to say hi, while I was out walking so I missed him. I hope he will try tomorrow.

I can't remember if I have mentioned how nice it is to not be neutropenic and to be able to step out of my room to ask a question or get something and how really fabulous it is to be able to walk outside. It makes being here much much nicer. My last admission if I so much as stuck my head outside the door, I was supposed to mask up. Then when I came back in, I felt like I needed to sanitize anything that had been outside of the room. This meant that if I needed something, it was much easier to just push my button and let the world come to me. Now that I can go out easily, I can walk out and get what I want. I can have my door open which for some reason I really like to do when I nap. I can walk around outside. It's nice. One loses track of things like that in normal life.

The view from this window is really nice, too. I can see the playground from my window and am treated to young families relaxing from time to time while their kids run around. It's a very pleasant view. I am only one room over from my last one, but the view, similar in that it has pine trees, a walking path, sky and general pastoral kind of scene, is also strikingly different in that I can see more of the building, the playground, a picnic table and a little patch of parking lot. There are more hummingbirds for sure and I do not know if it time of year, angle of the window to the sun, the fact that it's more of a protected alcove or something I didn't even think of, but there are at least 10 hummingbird sightings a day in this room every day so far.

In other news, no rash, no chemo tonight or tomorrow am and probably more Daria tonight. I am still really enjoying "When we were the Kennedys" which I read a couple chapters of today. I am trying not to read too much at a time because I know I'll be sad when it ends. The central event (so far?) of the book is her father's death when she was 9. It feels to me like she gets exactly right what it is like to be the left behind child at such a young age. I have not seen anyone else show what that time is like for the child so well elsewhere. The book is set in Mexico, Maine in the fifties. It's funny to me that her childhood is kind of near here and only ten years before mine, but a totally different time. If you are in need of something to read, I highly recommend it (with the caveat that I haven't finished it yet).

I hope you have good options for your evening also and will see you tomorrow for a likely nother slow news day.

Day 50

A nice quiet day with some good visitors, chemo in the evening. Who could ask for more?

My morning was very quiet and pretty non-eventful then Terry came, we had lunch, went for a walk and then he left and Eva and John came for a while. We covered lots of things the way conversations with Eva and John tend to do. They asked about what qualities in nurses I find most wonderful. I had just been thinking about it and certainly on the rare occasions I was actually sick, I really appreciated the nurses who acted as though they had seen this before and knew what to do and who were able to get me feeling better. The rest of the time, I appreciate kindness and efficiency. John said that he had found nurses who were able to make whatever was happening seem normal to be very comforting. Nurses who seem like they are interested in me specifically and not just me, the AML patient, are also viewed positively. Staff who are annoyed by taking care of me are not viewed positively ("What do you want?" is not an acceptable answer to a call light, for example.)

Not much else to report on from yesterday. The weather is beautiful, the grounds are gorgeous, the food is ok, the staff is kind, the chemo is salty, the rash is better and the visitors could not have been more congenial.

Saturday, August 4, 2012

Day 49

Today was a day dominated by logistics. I got yesterday's dose of chemo through a peripheral IV but they don't like to do that because it's kind of hard on the vein and can lead to scarring so the vein can't be used again for anything else.  Also, things like leaking are more likely to go wrong with peripheral IVs so they wanted a PICC in me as soon as it was logistically possible. I wasn't sure when it was going to happen so I spent my day getting little updates from people. The PICC inserter asked me to consent you so maybe you're next, etc. My friend John from induction came by to say hi, but then had to leave because the cafeteria makes a very small collection of vegetarian food on Saturday and he is a strict vegetarian. Soon after the notice that I was next for the PICC came and I got my ativan. Then Ira came by and I was a little out of it and they came to take me away for my PICC before we could get to talk much at all.

You may recall getting my PICC last time was a tough proposition. They stuck me 4 or 5 times and concluded that my veins were very spasm-y and that ativan would be just the ticket for me. I must admit my nose was a little out of joint, feeling like they thought I was "just a crazy woman," but I would give it a chance because if they were right I'd have a painless PICC and if they were wrong I'd have a great blog post. I did not calculate out what I would do if they were in the middle and it still took 4 sticks, but this time it was because my anatomy is tough. Evidently all my veins instead of getting bigger and coalescing on the way to my heart, divide and get smaller on the way up until they get to my armpit, then they unite and form a vein big enough to put a PICC in. One would not want a PICC right in the armpit for infection control reasons due to sweating and skin bacteria and the difficulty of keeping a mobile place like that clean so she kept trying for a spot in my upper arm that was big enough. She found one on try four.  I, of course, wonder what connection the spasms and size of my blood vessels have. I did notice that today's inserter seemed to be slower and more gentle as she pushed the catheter in and to wait longer before advancing it again. I don't know what effect if any this might have had either. I really wonder, of course, if the ativan made any difference at all.

At any rate, she said next time I should not even bother with the RN PICC crew and just plan on getting it done in interventional radiology. Each time I get a PICC they up the ante. I am excited to find out what the interventional radiologist will suggest. I'm guessing a different kind of device or maybe amputation.

After the PICC which although I didn't do anything besides lie there and be distracted by the radiology tech totally exhausted me, I came back and jumped in bed. Then my nurse gave me benadryl with the predictable response. I asked them to keep my room door open while I napped because I prefer feeling like life is going on around me while I nap. The nurse's station is about 10 steps from my door and I was not aware of anything that happened there. When I woke at 5:30, some one had delivered dinner which I didn't even wake for. Eventually I ate, went for a nominal two mile walk on the fifth floor and am trying to decide for my next activity if I should watch Daria DVDs or read the new blood transfusion recommendations.

Choices. Choices. I'm lucky to have some good ones. May you too.