Tuesday, July 31, 2012

Day 45 thoughts on doctors and dogs

Today Ana brought her beautiful German Shepherd, Rykka, over to go for a walk with Maggie and you can see the results below. Maggie will defer to all dogs so she lost her tennis ball for a while. We had a great time and both dogs went home and slept for ages which is, of course, the whole point of the exercise.
They look like they are in a desert, but it's just a road at PEA. Both dogs are wet from their time in the river and look who has the tennis ball.

I love this picture of Maggie. It is hard to get a good picture of her because she usually looks like a huge shadow. I have the tennis ball and she is ready for me to throw it!

The correct order has been restored to the world and Maggie has the tennis ball again.
  I went for a trial run of a little running yesterday and probably ran 1 mile spread out over a 2.5 mile expedition so with the two events together I got a fair amount of exercise. I was so tired this afternoon that I took my first nap in a couple of weeks. I was, of course, worried that this meant Something Bad was going on--leukemia is sapping all my strength; I have mysteriously stopped making red blood cells and am now way anemic. I tell my patients who are cancer survivors that for the rest of their life, whenever something goes wrong with their body, their first thought will be that this is the cancer back. My patients tell me that after about ten years that the hypervigilance fades. I'll let you know in 2022.

In a related topic, I have been aware (and I think I've talked about this here) that one of the main things doctors do for their patients is to hold worries for them. I am worried about relapsing; a lot of my patients are worried about not being able to live independently; people worry about being short of breath or in pain or alone or scared and not having the help they need. Dr. Hill cannot tell me that I won't relapse; I cannot tell my patients they will be able to live independently forever or promise them that I can fix their symptoms--even a very unsophisticated patient could tell that those are not things that can be promised to them. What I want Dr. Hill to do for me is to say, "we'll watch you closely for signs of relapse; we'll check your labs and do bone marrows a lot and if you relapse we'll catch it early and treat it aggressively." I want to take my worry which feels like a huge shopping bag, so weighty that I am afraid it will burst the handles off the bag and hand it to Dr. Hill. Somehow when he takes it from me, it magically morphs into a tiny grain which he can put in his pocket and which only weighs a little bit for him. He has a whole pocket full of them so it's not like he is carrying nothing, but it's not the back breaking load for him that it was for me.

That is part of the magic and privilege of being a doctor. I've been on the other end of that a lot and can tell that just handing the worry over to me is therapeutic for people. I have held the weight in my hand and seen how it feels to me: what its heft and size is, how it nestles right in with the others in my pocket when I drop it in. Now that I've been on both sides, I can see the magical transformation and feel the change in dimensions.

I think the difference between the worry the patient feels and the worry the doctor feels is two fold. For me, it is difficult to think beyond what would happen if I relapsed (or for my elderly patients to think what would happen if they could not live safely at home). There is just this whole terrifying territory out there. Dr. Hill has seen lots of relapses and he knows just what we would do. He has a plan. He is not helplessly paralyzed with worry because he is an experienced guide. The other difference of course is that the experience is different for us. Dr. Hill would be a guide in the territory of relapse. I would go live there. My experience of my patient's loss of independence is purely empathetic and not experiential either. I know that Dr. Hill would be sad if I relapsed, but not as sad as I would be which is what makes the worry shrink to something he can handle. I think the real magic is that, knowing that it is not the same burning issue for him that it is for me, I can still hand over the worry to him and it is relieved for me. It really works if he accepts it properly.

Magic--that is what I do for a living. I am a magician. I am grateful to my magicians and yours.

Monday, July 30, 2012

Day 44

No leukemia news for today. Still planning chemo jail on Friday. I am starting to think about sorting through the 29 days of stuff that I brought home from my last episode because I will not need all of it for only five days.

In non leukemia related news, I dug the broccoli plants out from 29+ days of weeds. They're still there and very tiny and fragile. We'll see how they do now. They were exposed to the sun for fewer than twenty minutes when the first cabbage moth came along.

I went to Portsmouth and had a tea with Patrick. I think we have made plans two or three times that have been cancelled at the last minute due to doctor appointments, surprise consults, etc. It was nice to get to sit outside Breaking New Grounds and chat for a while.

I also wove a little bit, but I am currently very frustrated with it and don't want to talk about it. I am glad my loom is too big to go to the hospital with me.

Since there's not much news, here are a couple of very sweet pictures of me and Ellie from when I first came back from induction.

This cute little dog from the other side of town was wandering around our backyard when we were trying to go to the grocery store so Emily and I took it over to the police station. It was very different from our dog who weighs 60 pounds. When I patted my lap, the dog jumped right up. It felt no heavier than a paperback book as it landed. Evidently the dog has a rap sheet because the policeman said, "I know this dog." Our dog leashes are all too big to fit into the little tiny d-ring on its collar. Cute. Dog tags don't have a phone number or address on them anymore so we couldn't just take the dog home. I hope its people don't get a fine.

Sunday, July 29, 2012

Day 43 garden, shoes and a 5K

Today's highlight from Ellie's point of view is undoubtedly that she got to go to Payless Shoes and get two pairs of new shoes. We went thinking we'd see if there were any good back to school shoes and found two. I was feeling somewhat low energy so I sat down and let Ellie try on every pair of shoes in her size that she wanted. Usually I limit her to shoes we have some likelihood of buying and maybe one or two pairs of ridiculous high heels (what she really wants to try on), but I was feeling low energy so I let her try on whatever she wanted. It was odd; she only tried on about four pairs of crazy shoes and then went to practical shoes. She scoured the 8's, found a pair, then the 7 1/2's and found another pair, then looked back at the 8's and found the second pair in an 8 so it will last a little longer. She got a pair of suede boots with fringe around the ankles and a pair of suede slip ons. I would probably have agreed to the one half inch high heels (don't tell Ellie), but she didn't even ask. Dodged that bullet for another few months. The funny thing about the whole trip is that usually I am trying to get us in and out of there and am very much in charge of what we do, but today I was sort of tired and lazy and just sat around and let her do what she wanted. I am not convinced that it took a whole lot longer and, for sure, she was happier with the results. Hunh, a lesson from the leukemia, not that I really wanted one.

Another potential highlight of the day was that Terry, Tommie and I did the York Days 5K today. We walked it, but we did it. Tommie and I now have three of our SeaCoast RoadRace Series races done. We have three more to get our jackets. I think it is very cool that if everything goes well I will get a jacket while doing chemo. It will be my third jacket, and my proudest one. It was very fun. The race starts kind of early at 0800--in York, but walked along the ocean for probably half a mile which makes up for a lot. I would do it again.

My friend Clifton takes beautiful pictures of his garden in Michigan and sends me an almost daily picture of something gorgeous. He is the one who has provided the snap dragon pictures, for example. My garden is a bit wild this year because I planted it and then got leukemia and went off to 29 days of chemo jail, but I thought it might be fun to try taking pictures anyway.

Green cherry tomatoes and over-ripened peas on the trellis together. Behind the little brown building is actually the fire department, but it almost looks like a house with a reflection as though our backyard was on a lake.
I got a few that I liked and will share them over the next few days because hopefully nothing of any real medical interest will happen before chemo jail on Friday.

--- tiny update
I keep meaning to mention to everyone that there were  three articles I found of interest in recent NEJM's. In the July 26, 2012 issue is a really good CPC on a man in his 20's with abdominal pain and weight loss. I often don't particularly like them because they involve obscure diseases or aspects of more common diseases that are not particularly interesting to me. This one was neither. There was a nice article on opioid overdose (not something I really see, but all of use who prescribe opioids should probably understand the principles of overdose management and it turns out there is some new stuff since I last thought about it). Also a nice "perspective" type article by Perri Klass about "Zen and the Art of Pediatric Health Maintenance"--basically paying attention to the patient in front of you and how hard that can be to do at times in the July 12, 2012 NEJM. All come highly recommended by me.

Saturday, July 28, 2012

Day 42, nothing special to record

Things are getting very much back to normal. Tommie is here for a visit. Ellie cleaned her room of extra books that she wants to keep, but doesn't want in her room (being both packrats, we're very understanding of this and just put them in storage) and then after I got 2/3 of the way through packing them carefully so they would take up the minimum number of boxes, she wailed, "Mom! you messed them up; some of those are books that are supposed to go back in my room after I clean it!" She couldn't tell me which ones were and which ones weren't except for one pile which I did keep out separate so I feel like things are really returning to normal. This is good because in six short days it's back to chemo jail, or as Tommie calls it "the clinker."

We took the dogs for a walk and they had a great time and we saw the most dragonflies Tommie has seen in a while doing all kinds of interesting dragonfly business which aficionados like Tommie can point out. A tired dog is a good dog and if there are two and one is a terrier terrorist with a taste for plastic, two tired dogs are even better than one.

Otherwise, I hung out today, did some weaving and went to Kittery with Terry for coffee and to visit his studio, an utterly satisfying day.

I don't think I've talked about how I was diagnosed yet so I'll do that now in case you haven't heard the story. The more I learn about AML, the more I think I was tremendously lucky because I think we caught it pretty early and it was totally a fluke and really very weird too.

So, in March, I was in clinic one afternoon and just felt terrible, like even after chemo and rigors, I still have never felt as terrible as I felt that day. Everyone who looked at me said they thought I was pretty sick looking. Clearly I had a virus and every other time in my life I've had a virus, I have said to myself, "I have a virus; it will go away." This time, for reasons I still cannot really explain, I said, "hey! I've never felt this bad before, let's get a set of labs and see how bad they are."

My ANC came back at 700. It should really be more like around 2,500 and 700 is actually quite low. I made plans to recheck it in a few weeks and the next thing I knew it was two months later. I checked it on a Thursday, actually on my way to cancer committee where I saw all the oncologists and the pathologist who diagnosed me. Around lunch time, my secretary came back and said, "Dr. Braun, I'm looking for a doctor, it's the lab at CMC, but you can't take it because it's about you. I'm looking for a doctor! Where is everybody?" Eventually she found one who took the call and when I had a break in my day, I went over and got the scoop. Dr. Ong told me that they thought I might have leukemia.  My ANC was 200 which was really impressively low. On my drive home, I called the pathologist and talked with him. I had myself totally convinced that it was viral because I can always convince myself that I have a virus. In retrospect I was maybe a little tired, but I wrote that off to "I'm working too hard" which I knew was true.

It seemed to me that I should take the day off because I wasn't sure I could concentrate very well on some one else's problems with the possibility of leukemia in the back of my brain (even though I knew I did not have it--still). I called the clinic and told them I was sick and taking the day off. 

Dr. Shafeh who was the doctor who had ordered the labs called me to tell me that the more labs had come back (the "flow cytometry" for the doctor crowd) and that it really looked like leukemia. The pathologist called and told me he had arranged a bone marrow biopsy for me at the Norris Cotton Cancer Center. Terry talks about going to his studio that morning, and having me call him partway there to tell him the news. On the way there, it was a normal day, on the way back, the earth had shifted.

I think that is enough for one day; I'll tell the rest probably tomorrow unless something interesting to tell you about happens between now and then.

I hope you are having a nice Saturday. I am.

Friday, July 27, 2012

Day 41 bone marrow results

Don't bury the headline: bone marrow results from Tuesday were normal. Everything was good. The leukemia appears to be among the missing, but not missed at this point. It has been beaten down to a level so low we cannot find it anymore, but it is still there in the corners in very small amounts and would come back if we gave it half a chance. Therefore, we will do more chemo. It turns out I was wrong and it's only three or four more rounds of chemo with maybe a stem cell transplant from me (autologous is the fancy word for it) thrown in for good measure. At this point, we are not anticipating the donor bone marrow transplant that had me so worried before to be necessary at all at any point. I'll talk a little about the difference between an autologous and allogeneic (from somebody else) another day.

Today's visit was sort of odd in that the fellow, Dr. Kebbekus, seemed to have become my main doctor with Dr. Hill just coming in at the end to say hi and check on the important details. Terry says that I am no longer interesting now that I am getting better and have become a "fellow case." That is OK; as I tell my patients all the time you don't want your doctor to find you interesting. (Sometimes we joke about the worst thing to hear one's doctor say, "O, I've read about this, but never seen it before" is usually people's favorite for things they don't want to hear me say.) At any rate, they both agree that I should go back to chemo jail on August 3'rd (Friday) for five days of chemo. The way it works is two doses twelve hours apart on day 1, 3 and 5. Usually they do the first dose in the evening and the last dose in the morning so the whole thing takes six days by the time it gets organized, the line is put in, etc. So, I think that means in Friday, out Wednesday am. The good thing about this admission is that I won't be neutropenic at all (my immune system will not really be affected by the chemo until I get home) so I can skip the mask and go outside and be a fairly normal person except that I will be a hospital patient.

Afterwards I will go home to recover and if I do well and don't have fevers, I can stay home. I will have to go in for blood counts a lot and possibly some transfusions. If I do get fevers, I think I can go to CMC to get treated for them (yeah for local hospital!). Then after I feel good, we'll do it again, but only 3 or 4 times which is better than the 5 I had somehow thought would be required.

After the appointment, we went to the coop which is a nice post hospital visit tradition we are developing. They have good yogurt and sandwiches there so I ate dinner on the way home while Terry fought with all the people who left work early to get a jump on drunk driving their way to the beach.

Thursday, July 26, 2012

Day 40 visiting the hospice house

So, it's looking like next week may be chemo week. The end of the month when Ellie comes back from camp and has to get ready for school in one twenty four hour span and Emily has to get ready for school and probably leave within a day or two of Ellie starting middle school seems like a really good time for me to be maximally functional. If that is my goal, I will need to get cracking on chemo soon. I am suspecting that Dr. Hill will send me to chemo jail early next week.

Some interesting chemo trivia I picked up on pubmed. I don't think it's known for the cytarabine at the lower dose (which is what was included in induction, i.e., the chemo I already had, therapy), but at the higher dose that makes up consolidation therapy (what I have to look forward to), people seem to metabolize it at least partly by excreting it in the saliva. You may recall I spent a lot of the first course of chemo complaining about how salty everything tasted. I think I know why now. I really remember feeling like I could taste my saliva pouring into my mouth and tasting salty. Yuck. I also remember that the nurses were quite impressed by how much water I drank, I was trying desperately to get the salt taste out.

Otherwise, today I went to visit The Community Hospice House and also stopped by at the main Home, Health and Hospice office as a surprise visit. It was so nice to see everyone and talk a tiny, tiny bit of shop. A lot of people told me I should keep my hair very short even when it grows back. It's funny because for years, Terry, Emily and Ellie have been trying to get me to grow my hair out and I finally did so they could see for themselves how terrible it looked. And then it looked nice and I quite liked it so I thought, hey! I'll be one of those old ladies with a long, long braid. And then I got leukemia and now I'm not sure what I'll do when I have the chance to grow hair again. I guess I have a while to sort it out.

A funny thing about HHH is that I have been getting a steady stream of 1-3 cards/day, mostly from people there. It is a rare day that goes by without a card at all and the biggest single day was I think five cards. It really is as though there is a sign up sheet and everyone is picking a day, no more than three to a day and mailing me a card on that day. I asked a bunch of people who all assured me that, no, it was just working out that way. It is so nice to get a little collection of cards everyday. I had no idea how much they would mean to me.

Other activities for today included not one, but two trips to the car shop. First to pick up Emily's car and drop mine off, then to re-drop Emily's off because it wasn't fixed after all and to pick mine up because it was. Late in the day, Patrick dropped off his friend's book "When we were Kennedys" which I started and am enjoying. It was nice to see him. It sounds like he was not having the best day ever; any day that involves an ethics consult can be short listed as Not a Good Day (unless the protagonist is the one who requested the ethics consult). I also ate Chinese take out (on my list of things I wanted to do before I was re-chemo jailed). Yum, yum.

Tomorrow it's a quick visit with Debbie early, a (hopefully) quick visit with my dentist midday and then a planning visit with Dr. Hill in the afternoon, including bone marrow results. I'll let you know probably late in the evening tomorrow or Saturday morning what the word is.

I hope you sleep well, with minimal disturbance from the storms that I think are blowing into the SeaCoast.

Day 39 at the grocery store

This would be yesterday's post because I didn't realize I wanted to write about what happened yesterday until today.

Most of the day was pleasant and lovely. Diane came for a visit. We had lunch at the Loaf and Ladle and Diane graciously played Apples to Apples with Ellie and me. It was a nice, comfortable, lovely visit from a long time, lovely friend. It's like that line about all happy families being alike, but each unhappy family being unhappy in its own special way; all lovely visits are kinda similar, but the unlovely ones, see below.

Later in the day, we needed groceries so Terry and I went to the store. I was wearing Ellie's floppy straw hat that I sometimes wear in public and sometimes don't depending on the sun, the temperature, etc. We ran into the family of a girl Ellie used to hang out with a few years ago there in the pasta aisle. I could see the mom's eyes flicker around my ears which is where you would expect to see hair and where instead you see stubble. She asked about our health a couple of times, then we moved on to are you having a nice summer, did you have a nice trip, what teacher does your daughter have, blah, blah. Then we said bye, enjoy your summer and left. I did not mention leukemia at all.

It's weird because it's not really like I care if she knows and it's a small enough middle school that she will know about twenty minutes after school starts--as will everyone else in town. She's a nice person and would have asked all the questions in a well meaning, kind fashion, but I just did not feel like going through, "leukemia, chemo, Lebanon, very nice, one month, not too bad, five more if everything goes well, bone marrow biopsy, virus, March, mid December, thank you, I appreciate that" one single more time at that moment. I feel badly because her questions would have been well meant, and it would not have been unreasonable for her to ask, but I just wanted my toilet paper and rice and to go home.

Sometimes even very kind, well meaning people can't help themselves and ask the next question, "So, you're gonna be...OK, right?" The answer is, "yes, we caught it early; I'm getting the right treatment; I've got good doctors; I seem to be tolerating the treatment well and having remarkably few side effects, my health is otherwise good and I do everything my doctors tell me to do so I have every expectation that this will not shorten my life." That is really a nice paragraph to be able to say anytime you have a Big Diagnosis like leukemia, and I know when people ask, they are asking out of concern (and maybe a little fear for themselves--could this happen to me? what would happen if it did?), very human and positive emotions, but there are times when I just want to do my shopping and get back home.

I never realized before that one of the privileges of appearing to be in good health is going about my business without feeling guilty for having a bit of privacy in the pasta aisle.  I want to be perfectly clear; I really feel like the questions even when they come from people who barely know me are well meant and genuinely concerned and I appreciate the concern. I just want to get a bag of rice without having to think about the stupid leukemia.

I could get a wig, but I think I will continue moth eaten and claim the privilege of the apparently healthy. In which case, a lot of eyes will flick over my hairline and a lot of "yes, I did have a nice summer, did you?" will be said.

I hope you appreciate your privileges and are able to claim easily any you want and lack.

Tuesday, July 24, 2012

Day 38 just the news, now with an update

Long day and I am very tired. I will write more tomorrow, but wanted to let you know that my labs were pretty good. My hgb is 10.9 (which is a little low still, but not much), my platelets are 682 (which is still too high, but more normal than last draw--yeah!) and my white count and types of white cells are still normal, normal, normal.

The bone marrow went really well and only hurt a bit. There was actually nothing in it that would qualify for the label "pain" so that made for a very good day.

I stopped by my office and said hi, saw a couple of patients, lots of friends, got lots of hugs and happy greetings.

Emily and I did the crossword puzzle which was fun and I very much appreciated her company on my journeys today.

More tomorrow, for now off to a well deserved and very comfy bed for me. Don't stay up too late, friends!

update #1
OK, it's morning and now I am energetic enough to write. I've done my sudoku, had my coffee and the dog's state of near starvation has been slaked for the moment so now I can think properly.

I've never really described a bone marrow biopsy, have I? I've described it to a few people in person, but not here. I am sure there are other, better descriptions out there on the web, but here is what it has been like for me. Clearly, I am not an expert in them, having had only three, but three is getting to be enough to be more than a novice. An important thing to know before we start that not everyone knows about me is that I have an abuse history. It's not a huge history and I have spent a lot of time in therapy and done a lot of work, but it's there. Why it's relevant here is that a bone marrow biopsy is done behind me so I can't see what's coming and there are parts that hurt a lot and even some parts that cross over into pain. I always warn people who are about to work on me that I have this history, that I don't have PTSD, but that they should treat me as though I do and that I want them to talk to me a lot and tell me what they are doing; that will help me a lot.

The location of a bone marrow biopsy is the iliac crest. To find it on yourself roughly, put your hand on your hip with your fingers pointing towards your spine in the back. About under the pads of your fingers is where we're putting the needle. I've never seen any of these implements so I don't know what they look like at all, but I sure know what they look like in my imagination.

First we assume the position; some docs have one lie on one's side, Dr. Hill had me lie on my stomach. Either way is equivalent in my book, but not everyone can lie on their stomach, of course. Then lots of chlorhexidine, some drapes, small talk, marking with a pen (people either use ink or pressure and just dent the skin--you can imagine how hard one must push to dent the skin and make it last long enough to get the next step going; it's not terrible, but alarming if one is not expecting it--one doc did not warn me about this and was quite surprised when I jumped as the pen pushed into my butt--sorry; I can't see what you are doing!). Sterile gloves on and it's time for the lidocaine. Just like at the dentist, the lidocaine doesn't really hurt, but it is sure nice to get a warning. They describe that they put a wheal in at the surface, wait and then go deeper and then deeper. Unlike at the dentist, where I think the nerves are all in well known place, this seems less predictable. Sometimes I feel weird tingling or even electric sensations in other places in my pelvis and once even in the hip joint. It passes quickly.

The next step is when they take some kind of cutting needle and drill it into the bone. In my imagination, it looks like an old fashioned cork screw and they just turn it slowly in. The bone is completely numb so I cannot feel it going in, or feel the bone it's going into vibrating, but I can feel the bone vibrating against the adjacent bones. The first time, I felt it in my knee (the hip bone's connected to the thigh bone, the thigh bone's connected to the knee bone--don't know why I didn't feel it at all in my hip). You know how if you are on a very bumpy gravel road and you get shaken by the trip, how that feels? Well, imagine that feeling in one isolated joint that no one is even touching. It's weird. This last time, I felt it in my spine. It doesn't hurt, it is actually sort of funny.

Then, we make contact with the marrow space. Two of the three times I felt a little pop! right at the moment the cork screw pushed through the cortex of the bone. It didn't hurt, but again felt weird. Of course, in the normal course of events, no one is ever aware of their bone marrow or their marrow space so these sensations are things that my brain has never had to process before.

The next part is the painful part. Everything above can be controlled with lidocaine or is caused by the lidocaine. Not so much the next part. There seem to be two steps to this: a "core biopsy" or something similar which is when they use the hollow needle to take out a piece of bone marrow all intercalated with bone. I imagine it all cozy, doing its thing, only the marrow at the very edge is aware that anything out of the ordinary is happening, then blammo! into the fixative for you. It is roughly one centimeter long and about the thickness of a piece of yarn you would knit a baby sweater with. They send it to the lab where they "demineralize" (dissolve the bone away from) it and then they look at it under a microscope and make smart pronouncements. I think this step usually is quite painful although I'm not 100% sure because I can't see what they are doing when.

The other step is for 100% sure painful (unless it's not) and involves "aspirating" the bone marrow. I imagine a long thin eyedropper sucking up marrow juice and in my mind the vaccuum it creates is what hurts so much. Have you ever had sciatica? Well, it feels kind of like that, except for me, I've always felt like I could feel the sciatica taking a path that made sense (butt to thigh to knee, worse if I bend this way, etc.). Aspiration feels like a lightening bolt with one end fixed to the site has been let loose in my body and the other end swings wildly around: hip to back to thigh to pelvis to hip to ... It is the kind of pain that requires your attention. For me, this is the part I dread. The lidocaine part, the drilling part, the bruised feeling afterwards, it's all fine. It's just the 5, 10, maybe even 15 seconds of pain that make me try to avoid the procedure. This pain is so far off the pain scale of anything else I can remember experiencing that there is no comparing it. It is totally fascinating, however, because if I can wrest even the tiniest drop of attention from it (which is the whole point of breathing exercises for me), it does decrease. The amount of energy required to pull my attention away from it is astonishing, however, and I lack the initiative to do it for myself--my attention is like a deer in the headlights staring at the pain--but someone else can tell me to do it and I can pull 1 or maybe 5% of my attention away and it helps a lot.

Back to the bone marrow situation. I'm still lying on my belly with an eyedropper sticking out of my backside. Here is the amazing part! This last biopsy, there was no pain. No pain. Dr. Hill said, "ok, there's the first aspirate; I think I'll need about 10 cc's for all the send out tests we're doing." I thought to myself, "he must have done a different kind of aspirate; here comes the painful part," and there was no pain. None. Not a bit. Next, he said, "Ok, we're done" and I was shocked. What? When's the terrible part coming? Here I made all this adrenalin and there's nothing to use it for? Aren't you even going to break my kneecap?

Evidently not. All bandaged up. Specimen to lab, last case of the day. Here roll over and lie on this pressure dressing for twenty minutes. I'll get you some cranberry juice and then you can go home.

I tried to explain to Dr Hill that the usual pain was not there and he kept apologizing for the lidocaine. The assistant said it didn't hurt because he aspirated slowly. Really?!? You're telling me that if everyone who does bone marrow biopsies aspirated more slowly, the worst part of the procedure would just not exist? When I think about how many times patients have told me about how miserable a procedure it is, plus my own two experiences of it being painful, I am not even sure how I should feel. I'm almost looking forward to my next one so that I can ask the biopsier to do the experiment.

Monday, July 23, 2012

Day 37

Another pleasant and largely uneventful day. Bought some new clothes because if I have to be in the hospital at least I can have nice pants to wear and Kate and I went out for tea afterwards.

Here is a picture of Ellie and my feet together. See if you can tell which are whose.

Pretty incredible, huh? Our pediatrician always said you could tell who belonged with whom at the beach by noses and toes.
(spoiler: mine have blue and Ellie's have green nail polish).

I also started some weaving over the weekend and lots of people have asked lots of questions about my loom and weaving at various points. Here are a couple of pictures of my loom, getting dressed.
The warp has been pulled thru from the back and partially threaded on the heddles. The chair behind it is a typical sized Windsor chair so you can see how big the loom is.

The whole warp coming over the warp beam in the baack, thru the lee sticks (the wood), thru the heddles (the white stuff--that's where the harness magic occurs) and then thru the reed.
I am just goofing around with learning a new technique so the warp and the cloth are not that interesting right now.

So, here is an interesting leukemia related thing (which is what you come here for, right?). Most people who know me very well know that I have a tremendous sweet tooth. I really have met very few adults with as strong a sweet tooth as I have. However, since having chemo, sweet things taste weird to me. For instance, Starbuck's mocha and every kind of ice cream I've tried taste like it has aspartame in it. Starbuck's mocha in a jar tastes ok as does a made at the store iced caramel machiatto. Chocolate, even the really high quality chocolate I usually buy in Portsmouth at Byrnes and Carlson, tastes too sweet and not just too sweet, but wrong too sweet, almost like I can taste the sweetness at the back of my tongue and it just throws me off. It makes me kind of sad because I have liked chocolate and other sweets so much.

I can understand intellectually that whatever I'm eating is something I liked, but it just tastes wrong, different. Interestingly, I have liked lemon tarts, poached peaches, fruit of every variety and have almost exactly the same non-sweet taste that I went into chemo with (except that I have for sure eaten more meat since my diagnosis than in the twenty five years preceding).

I decided today at dinner that I am just going to plan on eating potato chips or something for desert every night and give up on the sweet thing for now.

I wonder if it's that some tastebuds have been killed off or have regrown in a different place or if it might have something to do with the bacteria that lives in my mouth as I was on broad spectrum coverage for three weeks. There's probably a nice PhD project or two in this for some one. Maybe people's dietary preferences could be changed by manipulating their oral bacteria.

Sunday, July 22, 2012

Day 36

Well, this will teach me to complain about having to explain my leukemia to people. We came home from dinner at about 8 pm and I was so tired I couldn't even stay awake for fireworks at 8:45 so I went to bed. Then they woke me at 8:45 and I fell back asleep before Emily and Emma walked the 5 blocks here from the park. I woke in the middle of the night with this dumb dream that I was driving Ellie somewhere in my car and it would only go in reverse and at 40 miles per hour. The brakes didn't work, it wouldn't slow down or go faster, 40 miles an hour in reverse is all I got. Ellie was in the back seat and said, "this happens to you a lot, doesn't it?" When I woke up I realized it must be a recurring dream. Out of control much? Doing the best you can with a set of resources you are very aware of being limited? Evidently. I think I have had this dream often enough for it to have lost its punch. At some point, the road became one lane, I woke up, rolled over and went back to sleep.

I am starting to feel like one of my older folks whose main social life is going to doctor's appointments. This week I am seeing the gyn on Tuesday in the am (don't ask) and getting another bone marrow on Tuesday in the pm. Then I'll see Dr Hill on Friday afternoon and we'll go over the results of the bone marrow and figure out what the next few courses of treatment will look like. Other than that, I am going to try for the beach Monday am and hope to go hear Patrick's friend read from "When we were the Kennedys" on Tuesday evening at RiverRun. Maybe have some visitors or go visit someone myself on another day and get in some weaving.

I am winding up (hopefully) slowly to a likely five day hospital stay for chemo in early August. I feel a little like I sometimes feel on Sunday night, like if I don't go to bed, Monday morning can't possibly come and then I won't have to go to work. It's never worked for me, but I always feel like it should. So, if I just lolligag around, consolidation chemo won't get here and then I'll be able to always live in this very pleasant state of suspended animation.

Denial is a beautiful thing.

I wish you denial in the ideal measure.

Saturday, July 21, 2012

Day 35 (day 34 skipped)

Yesterday was so busy that I didn't get to post--errands, weaving, walking, dining, visitors.

Today is less busy, but still fun. Emily has her friend from college here. They're just hanging out doing college student things.

It's American Independence Festival Day in Exeter so we all went downtown to check it out. It was not as nice as previous years sadly. There were not very many tables compared to usual. We're going to the fireworks tonight. It's always been fun previously. We'll see. Usually I see lots of people I know and maybe see only once a year so it has potential to be awkward. Yes, I'm bald because I am an avant-garde artist--that is what Emily is encouraging me to say. It's not too bad to tell people about the leukemia, but it gets tiresome to repeat it more than once an evening so perhaps I will only tell the first group of people I see. After that, I'll just maintain a silence when people stare at my head.

It's actually been interesting to see what people do with my big moth eaten head. Usually, I can see people's eyes flick over it as they register "bald." Every now and again, some one will really go over my whole head, "bald. Wait a minute, bald on this side, too? Ok, bald. what about on the top? yes, bald." No one, not even a random four year old waiting in line at the grocery store has asked me why I'm bald. The guy who rotated my tires asked how much I hated the weather and I told him I'd been in air conditioned splendor for 29 days so I was enjoying weather and he asked "chemo?" That is the closest anyone has come and I did sort of invite it. One random woman walked up to me after she overheard me talking with some one and wished me good luck. She told me her sister had breast cancer and she knew it wasn't any of her business, but she hoped I did well. I thought that was very sweet.

The social interactions of an obvious cancer patient: the fireworks episode tonight.

Otherwise, I'm weaving a little, hanging out with family, eating out lots and making fun of the dog's various snoring noises. It's a good life I've got going on here.

Terry and I are off to the local cheese store. We're out of brie and candied pecans so it's an emergency!

Thursday, July 19, 2012

Day 33

What a great day. There is just about nothing to post. I continue to feel better every day and get stronger and go for longer walks around town (2 miles this evening) and eat a more and more normal diet (ice cream still tastes too sweet).

Today, I lost at Uno instead of Sorry; supervised Ellie and the daughter of one of Terry's friends; cooked lunch and dinner; dug out the beet and tomato plants from a month of overgrown grass and misc weeds and used a shovel to dig a 6 foot tall weird flowering weed out of Ellie's flower garden that no one happened to notice for the past month. I'm a little sore, quite tired and very happy.

Also, Dr Hill (my official oncologist who is on vacation) gave me a call today just to check on me which was really nice because I was starting to work myself into a frenzy about having platelets of 745 (this is about 1.8x the upper limit of normal. platelets are a component of your blood that allows it to form clots). Like, what if I survived my leukemia only to be completely disabled by a stroke because my platelets were too high? Should I be on aspirin, especially since I'm also on some girl-hormones (for reasons that involve TMI)? Lather, rinse, repeat, spin out of control. Anyway, he called from his vacation (I thought I was a devoted doc--I call people from stay-cations, but I don't think I ever have from an out of state vacation--not that I've gone on one of those for a while) just to check on me and see how I was doing and was able to convince me that since my total cholesterol is 140, since I have no coronary heart disease, peripheral vascular disease and am 47, that I'm OK even if my platelets were a whole lot higher than they are.

For me, it's so nice that the answer isn't just "you won't have a stroke, stop worrying," but a detailed explanation of why he thinks I won't with an answer that responds specifically to what I was worried about.

Our friends are teaching Ellie to surf tomorrow. If you hear that we are moving to Hawaii next week, you'll understand what happened.

I hope you have a most excellent evening and Friday.

Wednesday, July 18, 2012

Day 32

Off to a celebratory dinner with Terry! More details to follow.

Today we paid Dr Manno a visit and got a set of labs drawn. Hopefully, everything went correctly at the lab because the values were excellent. No blasts (phew!), WBC 6.2 (normal), hgb 9.8 (still a little low, but higher than I was discharged with), MCV 94.2 (normal sized red blood cells), platelets 745 (a little exuberant--hopefully, they'll settle down soon), 1% metamyelocytes, 2% myelocytes, 14% monocytes, and the absolute counts of everything were normal. My ANC is now 3, 170 which means I can go to the dentist. o, boy! (actually, I want to go to the dentist to get anything even slightly off taken care of so it does not become a source of problems with the next round of chemo (which, just as surely as early August is coming, is on its way). My liver and kidney labs were all normal, including an albumin of 3.5 (now normal, was 3.2 in the hospital which I had a mini-meltdown about).

I will be seeing Dr Hill a week from Friday so, as Terry puts it, we have about nine care free days before the next doctor visit.

Otherwise, today was lovely. I walked 1.7 miles around town, ran a bunch of errands, including getting the dog de-stunk at the groomer's, lost at Sorry to my favorite Sorry shark and I don't think I even made a single triumphal return visit to my bed today.

Terry and I went to what I'm pretty sure is my favorite restaurant, BlueMoon, which is two blocks from my house. When I was in the hospital, I sometimes asked myself how will I know for sure I've gotten out of here? The answer was often because I would be having dinner at BlueMoon with Terry, eating their bread and drinking a housemade sangria. Well, tonight, I did it. I was careful to avoid the cream sauces and had a delicious turbot stuffed with mushrooms with some fabulous grilled potatoes. It had pesto, but hopefully, that was not too rich. We go there often enough that all the old waitstaff know us (there were two new ones, however) and it was so nice to see them and chat for a couple of minutes. Terry had already stopped by while I was in the hospital to give them the scoop so they didn't feel like we had spurned them and I didn't have to explain the whole leukemia story which was a huge relief. In all, a very successful and cozy celebratory dinner.

Now, on to nine days of relatively carefree life. Dr Manno says my job is to keep up my nutrition, exercise and keep my mood good. What a lot of hard work I have ahead of me! It's a pretty nice job for the next nine days.

If you would like it, I wish you some carefree days. If you have had enough carefree and feel you might need to buckle down now, I wish you luck with that. Either way, sleep well.

Tuesday, July 17, 2012

Day 31

It is so nice to be home. I am slowly getting more stamina and endurance. And sense, perhaps. Today I goofed around for a while, then went to Starbuck's with Emily and then tried to take a nap I didn't even need because I didn't even fall asleep! I just laid on the bed and rested. How about that, huh? Then Ana came over and we did lots of general goofing around, including a visit to my favorite fruit stand (no peach freezing which had been the original plan and which I dismissed as too ambitious--see? showing better sense). Then I tried the nap gig again and again! didn't need to actually sleep. This is becoming quite exciting. Soon, I may be able to rest in a chair during the day even. Who knows, what might come after that?

Tomorrow I go to see Dr Manno (my local heme/oncologist) to get my labs drawn and to work on sorting out the issues we need to sort out before I do chemo again (in about 2.5 weeks, not that I'm counting). I had been very afraid that he was going to draw my labs and say I had to go right back to Lebanon for another month (based on absolutely nothing, but how nice it is to be out and how afraid I am that that will be taken away from me).

Stefan called yesterday to say hi and assured me that he would be shocked if Dr. Manno sent me back so soon so I can breathe a little deeper now. I understand, intellectually, of course, that it is not even the tiniest bit reasonable to think anything is going too wrong. I'm getting pinker and stronger every day. Except for the hair thing, I look pretty normal. I can go up and down two flights of stairs several times a day, sometimes carrying a small basket of laundry. OK, I'm just going to see Dr. Manno and I'm not even going to pack myself a little bag incase he makes me go up to Lebanon so I can have my comfy pillow. I will just have the stuff I always have in my car with me, no extra clothes or my computer or ... in. out. in. out.

In other news, Ellie is ruthless at Sorry. If she offers to play with you, just be sure you don't do it for money.

My plan for this evening is to go for a little stroll with whoever will stroll with me or possibly by myself.

I hope you are having a pleasant and not too overheated day.

Monday, July 16, 2012

Day 30 update 1

July 16 wherein we discover that our heroine is actually weaker and does, in fact, have less endurance than she did before she spent a month in the hospital, having chemo, neutropenic fevers and platelet reactions.

It seemed like if I paced myself I could do almost anything yesterday so I took what would not have qualified for a walk pre-leukemia with the dog and Dan and Ellie and ran some errands, put the laundry away, walked downtown to have lunch and went to Portsmouth to go out for dinner and now, well, I feel like I've run my first 10 miler of the season, my stomach is a little upset and I've already taken the first nap of the day! I would feel worse except that at one point Ellie was sleeping on the love seat, I was sleeping on the couch and the dog was sleeping on the kitchen floor. I'm not sure what Emily was doing (possible napping in her room) and Terry was going to his studio. It's good some one has a work ethic in this family!

I had this incredibly delicious (something tasted delicious!) salmon/potato/leek/sundried tomato concoction yesterday at Jumpin' Jay's. I asked them to make sure the salmon was well done. I think this is not what they are used to getting asked for. 

Our plan for today is to shopping in Portsmouth because Dan wants to go to a kitchen store there and we both like Portsmouth and I haven't been there since the Market Day 10 K the week before I was diagnosed/etc. Then we're going to go visit Terry's studio and have lunch in Kittery at the Beach Pea (although I will be having bread and butter and probably water).

I am hoping for a quiet, sensible day for myself and you, too, if that sounds good to you.

----update 1

It turns out that I had even less endurance than I thought, but more sense than many thought I had (including me). I went to Kittery with Dan, Emily and Terry and then went home to an hour long nap. Dan went to Portsmouth by himself and bought some nice water glasses, some non-scented massage oil as he is worried about my skin and chocolate. I slept deeply. I woke feeling pretty good, hung out, lost at Uno and Sorry to Ellie and then went for a walk all the way to the other end of downtown and home again. Dinner = fruit and yogurt, and may well for the rest of my life. I also stocked up on omeprazole which appears to be a new multi times a day requirement for life. My poor GI system was a quivering blob of just barely functional and now is like a pile of garbage decorated with little bits of garbage. Hopefully, it is rehab-able.

Sunday, July 15, 2012

Day 29

Today Dan came to visit from Pennsylvania and it is about 100 degrees in Exeter. There were so many cars going to the beach today that we got stuck in a traffic jam on High Street on our way to the fruit stand. We were going to go to a movie, but couldn't get enough energy together to organize four people even though we had the movie picked out. We did manage to get three of us to go to the Green Bean where they gave me a pickle even though I didn't want one and I spilled my coffee all over the place. It was Dan's first time there and he liked it. If you haven't been to the Green Bean, there are branches all over the SeaCoast; next time you come out here, go to one and get the mozzarella, pesto and tomato sandwich. I like it on olive; Emily prefers whole wheat.

We're going to Jumpin' Jay's for dinner. If you've never been there, come on out to the SeaCoast and go. Their scallops and salmon are really good. I'm not having any (because my hematologist would probably fire me--well, and because I don't like them), but Terry and Emily like the oysters a lot. The cerviche is delicious and I will avoid it--again, don't want to be fired.

Dan and I have been friends since we were 14. That is a lot of years. We have never spent more than a year without speaking nor more than two without seeing each other. We have both seen each other through a lot of stuff. There is nothing like an old friend.

It's so nice to be home. The girls are bickering; it's 100 degrees in the living room and the dog is hogging the fan. It's at least 5 million times better than being in the hospital.

I hope you are getting your heart's desire today and that it is much more wonderful than you thought it would be. It is for me.

Dan with yarn and a head massager in the background

Me with Ellie's arm and the kitchen in the background

Saturday, July 14, 2012

Day 28 updated

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

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

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

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

Thank you.

update #1

Don't I look good at home?
I'm home. It's nice. The world is surprisingly loud and chaotic. I went for a little walk with my family and we saw a dragonfly swarm. Then when we got home, there was another one in our front yard and my sister in law got out her net. I wondered what we looked like to the people who drove by, a lady with a dragonfly net and a bald lady. From up close, we looked happy. 

Friday, July 13, 2012

Day 27 with an update

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

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

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

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

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

Thursday, July 12, 2012

Day 26 with an update

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

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

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

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

Stronk, like bull.

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

Wednesday, July 11, 2012

Day 25 with an update

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

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

I thought you did.

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

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

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

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

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

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

I am going to go to well earned bed tonight. I hope you enjoy your slumbers and your head is filled with interesting questions for tomorrow.
See, half again as much hair. Pretty soon, I'll be finding half a hair in the sink!

Tuesday, July 10, 2012

Day 24

I wanted to share these pictures with you because they are so beautiful. I don't have any actual leukemia or Mary news for the day yet, but do have a little leftover news from yesterday.
Clifton sent this to me to celebrate his birthday. This cherry tree was hit by lightening two years ago and everyone said to cut it down. He didn't; it's doing fine and on his birthday evening it had a rainbow focused on it.

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

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

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

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

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

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

Monday, July 9, 2012

Day 23

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

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

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

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

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

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

Sunday, July 8, 2012

Day 22

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

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

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

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

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

Saturday, July 7, 2012

Day 21

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

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

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

The halo effect of my hair. Not much left.

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

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

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

Friday, July 6, 2012

Day 20

July 6, 2012 was another relaxing and fun day. Emily left this morning after a really nice visit.
Isn't she cute? Me, I'm almost bald. We had to re-arrange the medical equipment because at first it looked like my IV was an enormous earring.
I had another surprise long distance visitor today. I knew Stephanie was coming at some point, but was quite thrilled and surprised to hear her voice at 3:30 this afternoon. Shortly afterwards Tommie who I was expecting to come today arrived and the three of us sat around and chatted and then went for a second mile walk. I was (and am) tired.

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

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

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

Day 19

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

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

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

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

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

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

Happiest of Fridays to you all and speak up!

Wednesday, July 4, 2012

Day 18

July 4, 2012 was a fairly low level event for me. I walked a mile with Terry and then 1.5 miles later by myself and took a shower and read and slept. Also, attempted to eat high protein, high fat foods and considered some chocolate, but decided against it. Terry bought me some almond butter so I am going to have almond butter on either graham crackers or lorna doone's later on this evening. I'm supposed to eat fat so I can absorb my anti fungal better and I'm supposed to eat protein to help keep from losing any more muscle mass.

The three things I have lost in Lebanon: hair, muscle and leukemia.

Nice skull shape.

Do you know Zeno's paradox? The idea is that the arrow can never actually hit its target because first it has to go halfway to its target, then it has to go halfway of what is left, then it has to go halfway of what is left and it can never actually get there. The answer to the paradox is that infinite series can have a finite sum, but the reason this is relevant to me today is that each time I wash my hair I lose half of the hair I have left and each time I shower I think there is no way that there is enough hair left for me to be able to lose just half of it. And it keeps happening over and over again.

Today as I walked around the unit it was fun to get to give my news to various staff working at other pods. "Did you hear my news? No leukemia left." They come running up and hug me because, of course, this is the news they do their jobs hoping for. Induction is not over until it's over and the absolute neutrophil count is up to 500, but so far, I have had such a good course. I have had about 24 hours of neutropenic fever and about 24 hours of platelet reaction and about four days of mild nausea. I've needed hardly any blood products (I can't remember if it was 1 or 2 units of red cells and 2 units of platelets that I chewed up and 4 units of platelets that helped out).

Update on the platelets: there is only one unit of platelets left for me in house. I guess the platelets that have been delivered recently have not been appropriate for me. The lab value is 23 now which is fine and maybe my own marrow will start doing its thing soon.

So, it turns out that all I am waiting for now is my own marrow to wake up after its horrible assault with daunarubicin and cytarabine. Dr. Hill (my oncologist) has used the garden metaphor before, that I have poured weed killer all over the garden--everything is dead--that's what the bone marrow showed--and now I am just waiting for the flowers to come back because they're not really dead; they just look dead (the leukemia is not totally dead either; that's why I still have at least four more rounds of chemo ahead, but evidently close enough for now).

Here's the new visualization. Kids, try this at home. The marrow caverns have now been transformed to an open area, a sort of wasteland. It's drizzling. The dirt is bare. Then under one of the little clumps of dirt, a snapdragon starts up. Snapdragons are really wimpy little summer flowers. They do not over winter or seed themselves or anything, but in this garden, this year, they are. It turns out that this is the year of the dragon and that I am a dragon and that my friend Clifton in Michigan had exactly this happen this spring in his garden.
volunteer, over wintered snap dragons, don't they look like platelets should just drip out of their little mouths?
I am going to watch a "Pink Panther" movie in honor of July 4'th. Don't see the connection? Me, neither. I hope your evening is enjoyable and tomorrow, too. Love from the little dragon.