Being an attending physician

This article in the NYT today (free with registration) reminds me of something one of my first patients in Exeter said to me, "If you are going to be my attending physician, the thing you will need to do for me is attend. Don't just do something, stand there." When I started in Exeter, I took over the practice of a beloved physician who had been there for eleven years and left to live closer to her aging parents. A few of her, now my, patients didn't even come in to meet me, just went off and found new doctors right away. A handful (I specifically remember two, but there were probably more) met me once and decided it would not be a good match and went off to other doctors. Many made it clear the first time they met me that they were checking me out and if I didn't meet their expectations, they would go find themselves a new doctor. Most of this group decided pretty quickly that I would do OK. My style and the old doctor's style were fairly similar which helped a lot. The patient above, who was well over ninety when I first met him, was one of the last group. I am not even sure as he left after our first meeting that he had decided he would keep me, but ultimately he did, dying two years later in my care suddenly at his home.
In our time together, he taught me a lot, including much of what I know about advanced care planning. He had thought extensively about what he wanted at the end of his life and was the first person to tell me that he did not want under any circumstances to spend a single day in a nursing home. If he entered the hospital for any reason and I thought he was going to need to be discharged to a nursing home even for a few days of rehab, he did not want any medical support at all; he preferred not to survive if nursing home would be the result. He was very adamant about this. He was worried about having an illness that would weaken him so that he could not be independent, but not take his life. His wife had spent years in a nursing home and he was very afraid of a similar fate. He had had this same conversation with his cardiologist, too. And just in case I had any doubts, he would remind me of this conversation from time to time. Did I mention he was a retired physician?
As I stated above, he died suddenly at home after laughing at a joke. I think of him often, especially his reminder of the true meaning of "attending physician." Just attend.

I attended a football game a long time ago where the sharp eyed will see Emily in the formation.

I am grateful for all the lessons from my patients over the years. I am hopeful that I can continue to pay attention and learn from them.

Could my life please be more meta?

Sometimes it feels like the whole darned leukemia experience was designed just for me so that I could really understand what it is like to be a patient. OK, got that lesson. I don't have all the nuances of being a patient, but I got a fair part of the experience: fear, kindness, what feels nice, what is aggravating, delirium, chemobrain, etc. The latest is almost too weird: my beloved hematologist, John Hill, is out sick now. The person I talked with said he didn't know what John was out with, but that he'd be out for a couple of months. I am shocked and the world feels a little less secure than it did before. I worry, "but who will keep me disease-free and healthy?" I hope very much that he is OK and just like a regular patient, not knowing what is going on makes me worry more. I don't want to intrude in his space; I just want him to get better. I feel so helpless knowing that there is not much I can do. I know how nice it is to get cards so I sent him one. I told him if he wants to talk ever about the doctor-patient relationship from all angles, to let me know. We have pretty much every aspect covered at this point.
Why was I talking with someone up north who could give me the news about John? John and I had decided that I'd wait on my routine followup until he came back, but then I started not feeling that great and needed to see my regular doctor. The differential diagnosis of "doesn't feel well" in a leukemia survivor always includes leukemia, so we had to check a CBC. Guess what! My CBC was not perfectly normal. It was slightly abnormal in that way it often is, slightly low lymphocytes, slightly low platelets, normal everything else, no blasts or mis-shapen cells. My PCP and I decided that we were not going to worry about this, just re-check in a week or two. I was walking out the front door to go running and my phone rang. It was John's secretary telling me that the fellow wanted me to come up for an appointment tomorrow. I did really well and didn't panic, just asked her if there was new information. Of course, she didn't know so she paged him. He said, no, there was no new information (I imagined that maybe the pathologist had looked at my smear and called him without letting me know that there was something wrong). He said he just thought I'd like to come up so that they could take a look at me and re-assure me that there was nothing wrong. Nah, I'm reassured already. I'll do my routine followup with them--this time--and really really hope that John is back in three months.
It's so funny because when I first started practicing (and to some extent still) I felt like how can people find what I say so re-assuring or even find me so comforting. I mean, it's just me; I spend 24/7 with myself and don't find me re-assuring or comforting. Of course, what makes the relationship work is not me, or it's not only me; it's me in the role. I really see how some one in that doctor role who has seen you through tough stuff easily becomes, almost irresistibly becomes, some one you rely on, who makes you feel safe. I continue to be astonished that I can do for other people what John does for me, in the sense that I can make people feel safe when they are most vulnerable. What a fabulous job I have!
I am thankful that I get the privilege of being a doctor. I hope things turn out ok for John.

Day 259 - an unpleasant surprise

Terry had an interesting experience recently. He was at an award ceremony recently which was having AV problems. One of the speakers announced that before the next category, they would pause to remember those members of their community who had died in the previous year. Then, instead of showing the intended pictures of recently deceased people, they showed the pictures of the nominees for the next award. I wonder how it felt to be at a party, hoping maybe to win an award and instead to get a clear reminder of your mortality. Because, of course, one day their picture really will be up there because they're being remembered. The juxtaposition of hope that you will win an award and reminder that you're going to die one day must have been especially jarring. I hope the person whose picture was shown had already given some thought to their mortality to maybe take the edge off the reminder. I can think of patients I have seen in the past who would find this idea that they actually will die at some point to be novel.
I cannot recall if I mentioned that this week is to be my first official follow up appointment for the leukemia as my last leukemia appointment was my last official treatment appointment where we finalized that I was done with treatment. John sent me email that he was going to be away from the hospital unexpectedly and that some one else was going to be seeing me. I am sure you do not find it surprising that I replied that unless he was going to be out a long time, I'd wait for him. I told him that he's my hematologist and that we're not interchangable cogs. I wanted to see *him*. He seemed surprised, but pleased. It gave me a chance to reflect on the doctor-patient relationship. AML follow up is pretty easy: look at the results of a lab test and ask a few questions about energy, bleeding, bruising, etc. If the answers are abnormal, it gets tricky of course, but if they're normal, it's an easy visit. If it's normal, it will probably take ten - fifteen minutes. I will be driving one and a half hours to get to this appointment. John offered me at one point that I could do it in Manch or even by phone with him and I feel it is worth taking a half day off from work to do it with him and in person. Why is this?
A part of why I'm willing to drive three hours for a short appointment is that John represents safety to me. I trust him and I feel confident that he will think hard about my labs and will notice even a subtle abnormality. Another reason is that we have a history of him taking good care of me and this is the  appointment where I will be transitioning from a person whose leukemia is being treated to a person who worries that everything out of the ordinary signals a return of the leukemia. It will be nice to have someone who I have a relatively long successful history with.

 

This group of pansy relatives in my front yard is nearly immortal as this is its third year returning. They're not supposed to do that, but they haven't gotten the memo or perhaps they can't read. They're so beautiful and cute. I'm glad to see them every year.

I am thankful for the return of spring. I am hopeful that the natural world will continue to be beautiful and resilient.

re: Symptoms Yams and toes

My friend TimL_SF commented on my last but one blog post and when I answered it, I realized that I wanted to be sure everyone could read it so I elevated the comments to a whole post and here they are:

From TimL_SF:

Hi Mary,

good post! Lots that I can relate to on the patient side here.

"they get a few days where they intermittently have the sensation of a piece of yarn wrapped around their big toe".

is this a humorous hyperbolic example or a real thing? Inquiring minds want to know, particularly since I first read it as "piece of yam". These old eyes ain't what they used to be. ;^)

Best,
Tim

ReplyDelete

Replies

MaryFebruary 9, 2013 at 11:27 AM
Thanks.
This is actually a real thing that has happened to me. Initially I thought it was probably MS (because that is about the least likely and most catastrophic thing it could be and that is where I always go), but when nothing else consistent with MS developed, I figured it was probably something else. Eventually I decided it was probably a B12 deficiency symptom and then when I got my first set of labs in March, they were consistent with B12 deficiency, too, so I worried less about them than I would have if I hadn't had intermittent neuropathies over the years.
A really interesting thing is that I know my doctors would be at least a little interested in neuropathy (it is also on the list of side effects from the chemo I got) and it just never seemed appropriate to mention it. No one asked me specifically about it and even though lots of residents and attendings spent lots of time with me, it just never seemed like something to mention.
It feels stupid to mention it apropos nothing and the conversation never got around to someplace where I felt it would make sense to mention it. I know it's not an important thing--it's mild; it's intermittent--so I haven't felt any imperative to mention it. 
It's really an interesting thing. People will get all kinds of variations on symptoms and specifically deny the official symptom, but agree to some unusual symptom that might be a cousin of the symptom you are looking for. I've made a bunch of diagnoses at various points in patients because I was willing to think "outside the box" when they said they had symptom X, could it really be part of Q or Q filtered through their particular nervous system/cognitive processing of the raw sensation.
It would be fun to have a list of all the varieties of things that people endorse instead of what we doctors think of as a standard symptom. Hmm. This is the sort of thing that the internet was made for, isn't it? I know that I am a member of a perfect discussion group for this kind of thing, but I can't figure out if it was on google+ or linkedin or somewhere else. It's a good thing we have computers to make our lives easier, isn't it?

Day 237 - symptoms

"You've been waking with nightmares for months? Why didn't you tell me?" I bet almost every clinician has had the experience of asking a patient about a key symptom that they endorse as having been present for months. It can be so frustrating because if you had known they'd had neuropathy or hiccups or whatever, you would have been able to identify their problem sooner. It's really hard not to say "Why didn't you tell me sooner?"
The thing is, however, all of us have a whole list of odd symptoms that are happening at any one period in our lives and if we mentioned all of them, even to a sympathetic and interested doctor that you know will not look bored, you will feel like a hypochondriac. It can be hard to separate the important stuff from the not important stuff if you are not a doctor. And, if you are a doctor, imagine trying to construct a question that will get the patient to tell you that for the past eight or ten years, every few months, they get a few days where they intermittently have the sensation of a piece of yarn wrapped around their big toe and the rest of the time, their feet feel normal that will not also yield half an hour's worth of information you are not interested in.
Alternatively, it can be hard even if you know that your doctor would be interested in some symptom, if they don't ask about it, to offer it. No, I don't have diarrhea, coughing, shortness of breath, fatigue or weight loss, but I do have this weird feeling...
It's not clear to me what, if anything, one could do about this situation. Clearly, you can't ask questions about every potential variety of sensations that a patient might interpret the symptom of interest as. A doctor calls it shortness of breath; the patient feels it as "there is something lacking from my breath, but only when I take a deep breath" and will deny shortness of breath (true story). You can not ask every patient whom you want to know if they have shortness of breath, "do you feel something lacking in your breath?" and then you would also have to ask them "do you sometimes feel some pain above your collarbones?" (additional true story) because you never know how a particular symptom will manifest with a particular patient and you would have to ask them a nearly infinite set of questions on just that one symptom, then move on to orthopnea. I think the best you can do is to make it as comfortable as possible for them to bring you whatever they feel they can and to sort through it as best you can. It's those open ended questions again.
That's what I've been thinking about on this snowy day. That and "Sleepwalk with Me" which was pretty funny.
For me, for tomorrow, I will hope for a pleasant, inside storm day and safe travels for myself and also for you.

Day 224 - why do you ask?

I have always found the question of how much of myself to reveal to patients to be a thorny one. My initial feeling was that I should not reveal anything of myself because the encounter is not really about me, but then my patients taught me differently. When I started in Exeter, I picked up a practice intact from a doctor who was moving out of state. Fortunately for everyone involved, my style and hers were fairly similar and patients were not too shocked by my ways. One thing that surprised me, however, was that fairly frequently patients would tell me stories about her or her son, that she preferred salty snacks, that she had problems with sinusitis or similar sorts of things. None of the stories were inappropriate at all, but they always seemed surprising to me. At that point, I would never tell people personal things about myself at all and, yet, I could see that people really valued the stories they had about her. I wondered if I would be a better doctor if I told occasional stories about myself. I started letting out little pieces of myself if someone asked if I had children or if I liked the snow instead of dodging the question I'd answer in a straight forward way. It didn't seem to weaken the relationship so I kept doing it. I experimented a couple of times with offering information along the lines of "I can be sympathetic with how terrible sinusitis is because I get it all the time too" and I never seemed to be able to get it in a way that felt authentic and useful so I stopped.
I changed jobs and my patient population changed somewhat to include a large group of young women who had just graduated from their pediatricians. A number of them were facing big issues: college, moving away from home, first job, terrible boss, sexuality issues, mean co-workers, all the things that one faces as an adult that one may not have faced as an adolescent. Their issues and personalities filled the room and I returned to being as plain as a piece of tin foil.
About this time, I started talking with my therapist about the doctor-patient relationship and the idea of being a blank slate about whom patients can imagine whatever is most therapeutic for them made a lot of sense. I returned to letting very little information out. As the years went by, I began to share more and more about myself with some patients--those who did not seem to have needed me to be a reflecting surface. It was never the focus of our conversation, but I have shared the story about "holding thumbs" from the Community Hospice House many times, can be sympathetic about children leaving home in a way that works and I have travel photos I've taken and a couple of very high quality oil paintings done by family and friends on the walls of my exam rooms. I will tell people who painted them if they ask.
Now, I've had leukemia and it is generally known. I wonder what impact that will have on what I tell people about myself. Currently, it is not something I disclose to patients although I think it's about half and half that patients and their families know.
A really interesting difference between the primary care doctor/patient relationship and the hospice and palliative medicine doctor/patient relationship is that people whose family members are dying are, in general, not as interested in the doctor. I also cannot think of a time when I had the sense of being a foil for a person when I was being a hospice/palliative care doctor. Their issues are simply different than my primary care patient's issues.
Another really interesting thing is that I have been asked twice by patient family members since I've been back from leukemia whether or not I believe in an afterlife. I have never been asked this before and now I've been asked twice in a month. Both times it felt completely out of the blue, like we were not discussing afterlife or even issues that I would have thought of as spiritual issues. I have no explanation for it.
So, you might be curious what I've been up to today. Kittery with Terry, crossword puzzling, a little weaving and taking Ellie and one of her pals to see "Wreck it Ralph" were the main activities today. You can see why I don't tell my patients much about myself; it's because my life is beautifully, wonderfully boring.
For us all, for tomorrow, I will wish for lifting of the mercury just a little.

Day 221 - how are you doing?

Today's big excitement was a trip to the Salvation Army to find a costume for Ellie for Music Man, Jr. There were several contenders, but ultimately we chose a dark floral printed woven fabric dress with a mid calf length swishy skirt and a collar. It is really nice looking and I can imagine Ellie wearing it after the play at some point in the future when we won't have to safety pin a third of the bodice fabric away. The nearest Salvation Army is in Portsmouth and the parking lot was packed. They only had three dressing rooms and it was very funny to watch person after person walk past the line and look at each of the closed doors, turn to the first person in line and say, "O! you're in line." I was treated to a few extra iterations of this because Ellie is too old to go into the dressing room with company so I waited outside. A surprising thing is they had probably several hundred sleeveless dresses, but only maybe fifty ones with sleeves. They also had about a dozen wedding dresses. I wish I had known this when Ellie was littler and totally enthralled by weddings. For the longest time she called brides "the wedding girl" and it was always a thrill for her to go by the PEA chapel when the wedding party was outside getting their photos taken.

Other excitement for today was working. I told one of my co-workers that it is starting to feel like old times which is very nice. It almost doesn't feel like a rare thing that I am spending time with patients and families.

After reading yesterday's post, Tommie told me that she worked with some one who said the question providers should be asking patients is "what is it like for you?" His contention is that we ask people how are we doing? rather than how are they doing. I realized that at least sometimes this is true for me. I saw one patient today who really what I was interested in knowing about them was "how is my plan, my interventions for your symptoms working?" Otherwise known as "am I doing a good job? a.k.a. how am I doing?" The question was "is my med concoction working to make your life acceptable for you?" not "is your life acceptable?" or "what is your life like?" Food for thought for me. When I was in the hospital, I did feel that people were asking about me and what it was like for me mostly. I didn't have a whole lot of symptom management issues and no one needed me to see how their poisons were working on my marrow; the computer was the one who knew the answer to that question with my daily labs. One more thought on the what's it like for you question. When I have talked with staff about a particular patient or family member that is more than average difficult, I have noticed that pointing out that "it must be hard to be him" is a statement that is likely to generate empathy for the difficult person. It works for me too when I am having a tough time with another person to remind myself that it must be hard to be them. Sometimes I remind myself that it is hard to be me if I feel that I am not being sympathetic enough to myself.

For me, for tomorrow, I will wish for the presence, the energy to be able to consider what it is like for you? in all my interactions. For you, for tomorrow, I will wish for whatever your answer to "what would improve the answer to 'how is it for you?' " the most.

Day 220 - the plot thickens

As you may recall, I had labs on Monday and the results were not ready by the time my appointment was over so John was going to call me with results. I didn't hear on Monday and figured I'd call him on Tuesday afternoon. Do you want to know the addled reason I decided to wait until Tuesday afternoon? When I got my diagnosis, I had labs on Friday morning and the confirmatory lab was not ready until 10 am the next day. I figured if my labs were bad and they had to send off the confirmatory lab again (maybe Dartmouth doesn't send it off because they may have a fancier lab than CMC; I don't know), but anyway if they had to send it off, I figured I didn't want to call them and have them say "we don't really have news for you" that I'd rather wait until I could get the whole story. So, essentially, what I did is assume I was getting bad news and plan my schedule around that. Because if you are expecting bad news, everyone knows it won't come. Just like I'm protected from my leukemia recurring by leaving my port in place. OK, then.

It turns out my labs were not perfect, but not so terrible that any additional labs were needed. What was abnormal was my platelets were a little low (124 or 121 or something like that where normal is 150 or so and up). They have been normal for quite a while. The rest of my labs were normal. My diff (the kinds of white cells) was normal. My LDH was normal. My hemoglobin, liver and kidney labs were all normal. Because John is the worry wort that he is, I will be getting a repeat set of labs on Monday with results likely known on Tuesday (for the same addlepated reason as before).  I was reminded in my conversation with John about his qualities that I like so much the main one being that he reasons very similarly to how I do, worries as much as I do and about the same things and comes to the same conclusions I do about those worrisome things. I love that he lays the whole case out for me. He also thinks my jokes are funny and recognizes when I tell a joke which not everyone does so I am appreciative of that.

Let me tell you about what happened in more detail, however. His nurse called me in the afternoon, returning my call. Given the situation, she really couldn't say anything besides, John's not worried, but your platelets are low and he'll give you a call. I didn't think it was fair to ask her to give me more information so I waited for his call. In the interim, I tried not to think about what it would be like to have to go back to the hospital now, after feeling almost back to normal. I tried not to imagine how hard it would be for Terry who hasn't really recovered from June-December yet. I tried not to consider the other providers at HHHC and how difficult it would be for them and for the staff who are just getting back to feeling like they can depend on me and whoosh! out again. I avoided thinking about Emily and Ellie and how disruptive it would be to them. But, like the famous purple elephants you're not supposed to think about, those were the thoughts. I reminded myself that Elise said John was not worried and that she would have told me if John were worried. I noticed that I was just a speck grumpier than usual because while the front porch of my mind was helping Ellie do homework, the back yard was churning with all of those kinds of thoughts. You would think that a quick reminder of my mortality would make me a nicer person, but you'd be wrong. It would make me grumpier. Fortunately, I did feel completely reassured by a totally normal rest of the CBC and a normal LDH and after I spoke with John, was a nice mom at tooth brushing and going to bed time.

Earlier today when I thought about what I'd be writing about here that it would mostly be what it means to be a doctor who has been seriously ill herself. A patient today was telling me about an aspect of being seriously ill that I had personally experienced and I found that there is a subtly different way of listening and responding when you are listening as a doctor versus when you are listening as a person who has been through this. It was very subtle, almost just a different inflection in the "mmm, that sounds really hard." The patient I was with was (I think) sophisticated enough to pick up that something was not as usual, but not able to pick up what it was. I don't think it was a positive sensation for them either. And yet, returning to the previous intonation does not feel 100% honest. This is something I will have to give more thought to.

The final thing I wanted to tell you about today is something John found interesting. I did not realize it was an interesting thing until he pointed it out. Most days, I work six hours. Six hours is comfortable and I am not tired at the end. Seven hours feels doable, but I'm tired. One day I worked eight hours for complicated reasons and I was exhausted even the next day. John said he would have thought that if you could work six hours, you could work eight hours. That is really not the case for me. Now that he has pointed it out, it is interesting. The funny thing about it is that yesterday, I was driving home and suddenly thought, wow! I am really tired. I looked at the clock and calculated it out and realized that it was 7.5 hours after I had started my day. Interesting, huh?

For me, for tomorrow, I am hoping for a calm day. For you, I will hope for the level of excitement you wish.

Day 219 - return to the scene of the chemo

What a fabulous, complicated day today was! First I headed up to Lebanon to see Dr. Hill. Our visit was good. We talked about Dr Stone's visit and the fourth round of chemo. John said that he thought if I were to relapse he would not feel that it was due to the three versus four issue; that some people relapse and some people don't and it's often very surprising and people you really think will do badly do well and vice versa. That matches my experience as well. He also said that if I thought that if I were to relapse that I'd blame it on not getting a fourth dose, that we should just give me a fourth dose. We talked about how he was not excited to give me more chemo, largely due to how sick I'd been with the neutropenic fevers. He told me he didn't see the time elapsed as necessarily an impediment to more chemo if I felt like it was the right thing.
When I think about getting a fourth dose, I wish I had had it in some ways, but now that I am back to my life and getting more and more normal, it is hard for me to think about going out again and being out of work for two more months, potentially getting another fever, needing more blood. I was lucky with both of my fevers that I did not end up really sick and in the ICU; maybe this time I would. I have seen patients end up with life changing (and not for the better) complications from their ICU stays even with perfect care. I might or might not be gaining something by doing risking a fourth course. I think I'm good at this point.
After seeing John, I stopped in for a visit with Ira to talk about palliative care and that is always fun.
My final stop in Lebanon was 1West where I spent much of last summer. It was fun because some of the nurses didn't recognize me at first and would say things like "May I help you?" then I'd laugh and say "you don't recognize me!" Then they would. It was fun to see them for me and I think for them because not very many of their successes come back to chew the fat. One of the nurses (ironically the one who admitted me the first time) took me aside and said that he had a young patient who had just been diagnosed with AML and who was starting consolidation today and who was totally freaked out. He had just told the nurse that he wished he could talk with someone who had been through it. Would I be willing? Are you kidding? What a fabulous present to me that I could do that! I did talk with him for about an hour and I think was helpful for him. It was interesting because I listened differently from how I would as a doctor. I did not have to help solve or develop a plan to solve any of his problem. All I had to do was be sympathetic and listen. (Those are the main things I do as a doctor, but I have to be waiting for any opportunity to say just the right thing at just the right moment that can sometimes be tremendously therapeutic. With this man, I had no need to be deliberately therapeutic; just deliberate. As a doctor, I also have to develop a plan for problems. I listen and am not primarily thinking about how am I going to solve the problem, but when a plan starts forming and needs a particular condition or another to work, I will check it out with the patient. None of that needed to happen in our visit today. Also, it was not my role to explain any medical things to him, just to listen sympathetically.) I think I could be a professional visitor quite happily.
One interesting thing I did find out is that he has no idea who his attending is. He said that a bunch of doctors came in and talked with him. I explained how attendings worked and told him that he might want to figure out who his main doctor is because that's the one whose opinion he was most interested in. I hadn't realized, but of course it's true! how confusing the whole student, resident, fellow, attending thing is. Especially since some of the doctors are so young looking and some of the learners are non-traditional students and older.
Then I went to the coop, drove home, went to therapy. A funny piece of trivia about me is that prior to leukemia, I never got headaches--maybe one every few years. During treatment for leukemia, I got headaches when I was anemic, in fact, they transfused me earlier than they would have otherwise because of them. Now, I get headaches much more often. Need to eat? headache. UP too late? Headache. I guess now that it knows how to do headaches, there's nothing stopping my central nervous system now.
Another tiny piece of trivia that made me happy is that I remembered when standing in line at the cancer center that the last time I had been there, I felt that I was fairly normal, but there was about a ten minute wait and I knew I couldn't stand for ten minutes. Today, I knew I could stand in line for an hour if that is what needed to happen (it wasn't, thankfully). Another touchstone, moving toward normal.
You can recognize me, right?




For me, for tomorrow, I will hope for another day where things move infinitesimally yet inexorably towards normal. For you, for tomorrow, I will wish for safe driving in the snow. Maybe I can borrow that wish too. Can I have two unrelated wishes tomorrow?

Day 204 - for me? an apology?

Like yesterday, today was relatively relaxing and devoted to social activities. Dan and I drank coffee, took the dog for a 3 mile hike, had lunch, watched some Downton Abbey and had Thai food. A good day. Sadly, he has to leave tomorrow morning. I won't even be able to see him off at the train station because I am going to Lebanon tomorrow morning to see the pulmonologists.
Why am I seeing a lung doctor? Back when I had my first neutropenic fever, when it wouldn't go away after several days of the right antibiotics, they sent me down for a CT of my chest, abdomen and pelvis. The chest CT showed a lung nodule so we repeated it a month later. The repeat showed two nodules so we repeated it a month later. The re-repeat showed the nodules had gone away, but the CT scan looked like I had a pretty good pneumonia. I had no symptoms of any sort. Dr. Hill says all of this stuff can be consistent with chemotherapy effects to the lung so rather than CT'ing me enough times to really give me lung cancer, I'm going to see a pulmonologist. I suspect she is going to want a re-re-reCT in three months which will be fine because everything should be all settled out by then. I sort of want to go to the lab and ask them to hand my slides and blocks to me so at least I know where they are.
An interesting thing about this is that they taught us in medical school that once a mistake is made with a patient, doctors/nurses feel badly about it and tend to avoid the patient. This compounds the problem because now you have a patient who may or may not know something has gone awry (obviously, in this case, I know) and who is feeling relatively neglected compared to previous treatment. I must admit to being very disappointed that John has not called me to say, "Gosh, I'm sorry; I forgot to order your lab. You know, I was on service over the holidays and it's no excuse, but I have a little kid and was being pulled in way too many directions. I had asked the pathologist to run the lab, but it's a bit off the usual stuff he does and he didn't understand. Anyway, I didn't follow up on it because I was distracted by the holidays. Thank you for tracking it down." That I could totally forgive because I really want to be happy with John; I am so appreciative of the care he provided for me at the beginning in particular of my treatment which I think was way less traumatic than it could have been for me because he did communicate well with me. But I know some one has made a mistake and I know the buck stops with the attending doctor because he did not track down why he didn't get a result from a lab that he ordered--or--he forgot to order the lab. Now I'm left wondering why I'm not getting an apology call. My most likely explanation is that he feels badly and thinks that ignoring me will make the bad feeling go away sooner. Other possibilities include that he thinks I didn't notice a mistake was made (some insult to go with your mistake, Mary?), that he doesn't realize I deserve an apology for the mistake (doubtful as he knew when to apologize before), that he figures he'll just apologize when he sees me in two weeks at my appointment.
Perhaps in some cases, it is good to let the other person calm down for a while after you make a mistake, but medical mistakes are not an example of such a case. I think the apology should be given as soon as the mistake is discovered. Even though it's tough to say, "I was wrong. I'm sorry. I made a mistake. I'm not quite sure what I was thinking." or whatever you have to say, it just gets tougher for patients to hear it as time goes by. So, now you're in a situation where first you have to apologize for your mistake and second you have to apologize for not apologizing sooner. The relationship can be salvaged through even big mistakes (what has happened to me I would classify as little to medium mistakes) as long as it is clear that the provider wants to salvage the relationship. An apology is probably the clearest way to say that the patient is important to the provider despite the fact that the provider has made a mistake. I'm hopeful that the apology is forthcoming.
For me, for tomorrow, I am hoping that my pulmonology vsit will be a painless as I am imagining. For you, for tomorrow, I hope all your best case assumptions are true.

Day 185 - first day back

Back to work went well. Everyone was happy to see me, there was useful stuff for me to do and I felt like I knew what I was doing. My anxious worries that I even knew ahead of time were stupid did not come to pass. I managed to do OK even though we were out of coffee at home (it's coming in the mail tomorrow), I got there right at 8, I remembered my snack, it didn't leak or have so much condensation that it was a huge nuisance, I actually wasn't hungry midmorning anyway, there were enough computers to go around,  etc., etc. I am more tired than I would have been after a morning at home, but not outrageously tired. I got out on time. I stopped at Swann's for coffee with Eva on the way home and I was even able to walk downtown with Emily in the afternoon. So, I think back to work is going to be OK, but will build up my hours slowly.

On my commute, I listen to a lot of different podcasts and continuing medical education lectures. I don't really mind my commute because I feel I get a lot out of the time I spend in the car. Today I was listening to a lecture on "communicating bad news" and I was surprised to discover that I felt I really had info to add to the lecture. There were several points, but the most notable was when she was talking about how a lot of doctors don't like to deal with patient or family emotions and how if you brush them aside, they'll come back and bite you later anyway and how the family may not remember any information you give them, like prognosis or where the mets are or which labs are goofed up, but they will remember how you dealt with their emotions. I actually felt like a related issue was that at the times I was feeling a negative feeling towards my doctors (usually abandonment because that is my specialty), I didn't really want to talk about chemo or fevers or meds or symptoms. I wanted to talk about whether or not they were going to abandon me and how they better not do it again. We know that sometimes our patients come to us with very negative feelings about other doctors or often doctors in general. I have had the experience more than once where the family will want to talk about some prior situation and will need to recount the story with me being a sympathetic ear before we can move forward into the next step. I think it is the same phenomenon as I describe above.

Another talk that I listened to was "Zencast" which I highly recommend to everyone. Gil was talking about how being grateful is a good habit to get into and how people who were grateful and appreciative were happier, slept better and had a whole bunch of other benefits I don't remember. It made me think about how I close each post by hoping for something for the next day. After listening to him talking today, I considered instead of wishing for something, listing off the things I'm grateful for. That seems kind of sappy to do publicly and besides that, I really like the way I end the pieces. I think Gil would ask if I were living in the future because I think every post of how the future could be improved compared to the present. I wonder if he would say that this sort of thinking encourages me to be dissatisfied with the present because I have made it a routine part of my day to think of a way in which the present is not as good as I would like it to be. And, yet, I do not find it to be so. I think of it as "hopeful." How does hopeful fit with satisfaction with/acceptance of the present? Should I consider changing my practice of closing with wishes?

For myself, for tomorrow, I will wish for a sense of gratitude for all the gifts in my life. For you, for tomorrow, I will wish exactly the same.

Day 169 - giving bad news

Today's activities: more weaving (another Christmas present), reading (back to the new John Irving novel) and shopping (a ceramic Dutch oven type thing and cookie trays). I decided to buy Patagonia's warmest jacket online and did some grocery shopping. I'd never been to Mckinnon's before, but had heard people rave. It was pretty fun; they have a lot of really delicious appearing things and the veggie sushi that I had for dinner was very good. Portsmouth is really turning into kind of a shopping mecca.

I did want to take this opportunity to talk more about second opinions. The official reason to get a second opinion is to get a "second set of eyes" or to have someone who is uninterested (in that they know ahead of time that they will not be treating you) make recommendations. It uncouples the interest in treating a patient (financial and emotional) from the exercise of judgement.

In my experience, the second opinion was extremely valuable--before we even had an appointment with the guy--because it forces one to get one's "files in order" and to go through the exercise of organizing one's story sufficiently so that some one else can make judgements. This can be useful, as it was in my case when John recognized the lab result which had been languishing in my chart for months. It can also be useful for the patient to put together "here's what I've been through in the past six months" together.

Other reasons for getting a second opinion are when you seem to have two opinions from your one treating doctor as was the case for one of my friends recently.  In person, her doctor said "you don't have cancer," but two hours later at home, she read her office visit notes and found that her diagnosis was listed as "ovarian cancer." This feels partially like my situation also. Initially, I heard "we'll have to think really hard about whether or not you need an auto-transplant down the road" and then to be hearing "no transplant; wouldn't even consider it" without a change in my situation. Gosh, even with only one doctor, I need a tie breaker!

I think if it had been framed more carefully, I would have been comfortable with the change in opinion. Let me tell you my thoughts. Many of you will be familiar with the standard advice for "giving bad news": get the right people there, control the environment, give yourself plenty of time, sit down, start with a warning shot, etc. Although this was not "bad" news, and with the proper mindset was even "good" news (getting the same result with less treatment is always good news), I think it would have been better delivered as a piece of "bad" news. Maybe the "delivering bad news" heading should really be called "delivering serious news." Something big about my treatment needs to be told to me carefully and a "warning shot" would have been most welcome; "I have some news to discuss with you that will probably surprise you" I think would have made all the difference in the world to me.

I know John was really surprised by my response. Most people when you tell them they are going to need less treatment than they thought are elated. I was not; I was puzzled, confused and worried. How could John have told ahead of time that this was going to be "serious" news that should be framed with care? In this case, the issue of how much treatment I needed seemed wrapped up with the issue of how likely I was to relapse and, thus, how likely I am to, well, continue living long term. I think it seems safe to say that anything that might seem connected to how likely is the patient to survive should probably be treated as "serious" news. I think I would have agreed to the statement if asked before my diagnosis, but I'm not sure I would have understood that it's not just "the cancer is spreading despite the strongest chemo your doctor has been giving you" that is a statement about survival. That leukemia; it's the gift that keeps on giving.

Anyway, I'm happy to be getting a second opinion, even if I get nothing more from it than knowing my NPM1 was positive. I am happy my friend is getting a second opinion.

I am hopeful that my second opinion will get set up soon and make me feel 100% confident about the course of treatment I end up doing. I am hopeful for you that you are able to feel confidence in your decisions and, if not, that you can figure out how to get the help you need.

Day 161 - what patients want

Today was notable for two open studio visits, lots of time with Emily, a plumber visit and getting to eat the leftover cheese from Terry's fancy spread.

Ellie's ceramics teacher, Kit Cornell, was having her open studio today so we went over pretty much as it opened and took a tour around. I bought a tiny Christmas present for Dan and am considering a return visit. She makes lovely things and it was fun to go with Ellie and have her point out what she liked and why. Next stop, Emily and I went to Terry's building's open studio. First we admired Terry's studio and then we toured the rest of the building. Terry gave me a large water color by Fran Mallon a couple of Christmases ago and she has made little tiny prints of it and has them in miniature frames. It was very funny to see the picture from my living room wall sitting on a table in her studio. We stopped by to see Lisa Noonis as well and had a nice conversation with her husband. They were tied with Terry for the best food in the building--they had artichoke hearts and nice olives with their cheese and plain crackers. Terry had several kinds of really delicious cheese and both plain and fancy crackers. We also were on a bit of a mission since Emily got her ears pierced to find nice earrings for her, but nothing was quite what she imagined.

My next act after lunch was to take Ellie to her friend's house and then to come home and wait for the plumber. I'm sure you won't be surprised to hear he came in the last half hour of his three hour window if you have ever waited for a plumber. Problem solved, however, and pretty quickly so we're happy. When I see a plumber I always think of our plumber in Berkeley, CA who had a PhD in something, but worked as a plumber because he made more money that way. He told us that all he really learned in plumbing school is that things flow downhill and not to eat the last inch of his sandwich. We didn't have to call him in too often in the five or six years we were homeowners there, but we saw him more than once and that must be his standard schtick because we heard it each time. I didn't mind; I thought it was funny the second time too.

Then Terry brought home what was left of his cheese tray and with smoked fish and Beach Pea bread, it made a great dinner.

Hey, remember my last hospitalization? The one with the fevers, not the really bad fevers, but the second one with fevers? I've been thinking about that discharge recently and the resident said to me, "Well, we're done and you could go home tonight or tomorrow; it's really your choice." Back when I was a hospitalist, I would sometimes realize that some one was ready for discharge a little sooner than I had anticipated. The first few times this happened, I would work hard to get them out earlier than I had planned, but after a few times I stopped and would just have them stay until the morning as initially planned. The reasons I made this policy decision for myself were that I thought I was more error prone if I changed the plan and I thought I looked scattered and disorganized if I changed the plan suddenly right before discharge.

Those are good reasons and I don't know for sure if people are more error prone when there is a sudden change in plans, but it feels like I am. Now that I have seen it from the other side, I can say honestly that the docs don't really look scattered or disorganized (at least not to me, but I may be more understanding than your average bear); things change and it's a complex world we are operating in, plans can be fluid. In my opinion, the main thing to look out for when moving a discharge forward unexpectedly is that the patient doesn't feel abandoned. People who know me well will know that this is one of my "issues"; I am inclined to feel abandoned when other people might not, but the sudden offer to be let out, combined with "it's your choice" made me feel like the resident didn't really care what happened to me. "Stay, go, it's all the same to me. When I come in here tomorrow morning to round, I don't really care who's in this bed."

It's interesting to listen to doctors talking about their philosophy of patient care. Recently, I was listening to an EPEC CD and the speaker said that he felt what patients wanted more than anything from their doctors was to know their doctors loved them. This is only kind of true for me. I want to feel that I am important to my doctor, but only for the doctors I really like; most of them need only offer competence and courtesy and I'll be satisfied. Some one else I heard recently (and cannot remember who it was) said that what patients want more than anything is "to know that their doctors will not abandon them no matter what." I thought: that person is right on--a man after my own heart. Our resident above failed in both of these. (I don't mean to be too critical of him; just using his lack as a spring board for thought. I know residents work very hard and are pulled in twenty directions at once.) The funny thing about all of these statements is that just like there is not one monolithic doctor who wants one thing above all others, there is not one monolithic patient who has a simple, single desire. Or if there were, it might be to be known and understood so that whatever idiosyncratic needs one had could be met.

For tonight, I would like to wish for less intensity on the abandonment issue for myself. For you, I will wish for you to be known and understood. I think it's nice for people who aren't patients too.

Day 95 - home again, home again!

Here are my statistics for this consolidation:
doses of chemo: 6
visitors (counted only once/person):6
meals I ordered delivered correctly by hospital staff: 8/13
meals I ordered delivered correctly by commercial take out staff: 1/1
how happy I am to be home now: infinity

Compared to consolidation #1, this one was much easier. I feel completely "with it" now (remember I was quite "without it" after my last one); I am a little tired, but not overwhelmingly so. It was harder at the beginning, however, I think, because I had five weeks off instead of the previous measly four so I was starting to see that I could feel normal if I just kept off the poisons. I was not quite so willing to get back on them as I had been the first time.

Another difference is that this time (as is highlighted above) the food service was sending in random meals at some points. I was not all that excited about eating all the time anyway (one of the LNAs said to "eat like it's medicine" and I often have to) and to have something I wouldn't like under good circumstances show up is not that helpful. On the other hand, it became a little funny eventually to see what ridiculous things might show up on the tray. Vegetarian chili? No, sorry, pork roast. Entertainment is always welcome even if random foodstuff is not. Anyway, I'm home now and had Green Bean gorgonzola salad and pesto/mozzarella/tomato sandwich for dinner. I'm stuffed and it clearly made up for several of the "medicine meals" eaten at the hospital.

A second difference is that I expanded my walks a bit. I had previously seen the signs for the "Albert Schweitzer" trail, but had never followed them because I think I felt a little fragile and didn't want to potentially stray that far from the hospital. This visit I was feeling a little more self-confident and stronger and crossed the road (after googling the trails and memorizing their routes). It turns out the trails are completely on hospital land and are about one million times nicer than the circumferential hospital trail (like, they are real woods trails that go up and down and have old trees around and roots across the path and everything). This was good for morale, too.

A final difference was that this time I officially became too uninteresting for the residents' team and was followed by the nurse practitioner. Whether or not I'm interesting is somewhat debatable, of course. I am able to grant immediately that medically I am the dullest patient on the floor (happily!), but I think by virtue of the fact that I'm a practicing doc myself I have a thing or two to offer to residents that is actually hard to get in other ways. On the other hand, they may have gotten a lot of that in their first day with me (who knows what the heart absorbs when?).

Be that as it may, initially, no one explained to me that being on the nurse practitioner's service meant that the attending would still be seeing me. This was a fairly reasonable assumption because my first day on the NP team, the attending did not round on me (the fellow had and that counts for administrative purposes and I was spending a lot of time on the afore-mentioned trail so he couldn't find me, but didn't leave a note or call so I didn't know). I thought it meant that all the faces I had grown accustomed to would evaporate and I was feeling quite abandoned. (note the recurrent problem: goodbye not said) But guess what happened that was really, really nice? The intern who had been to busy to do more than the minimum in the morning had promised to come back to chat and he did. He was under absolutely no obligation to. I was no longer his patient. He could easily have stuck his head in and said something perfunctory or he could have come in and had a short chat with me, but he stayed for a long while--asked questions he didn't have to, answered questions of me he didn't have to. I was touched and impressed. I am quite sure he's going to be really good. Then this morning, I went for a walk (to get the coffee that I have discovered I can stand) and I saw the intern again. He said hi and remembered that I was leaving today. Then a while later I saw the fellow; same thing. I have had many a non-recognizing experience in the common area of the hospital; it made me feel noticed, appreciated. I liked it. I'm not sure what the difference was this admission, but it's good.

Now, after a non-eventful ride, I'm home. I took the dog for a walk, helped a little with homework, walked downtown to get dinner, ate too much and have read one of the semi-junk journals that get sent to us. About once/year I get hooked by an interesting title or two and always waste more time than it's worth. Anyway, a meta-analysis of 300,000+ primary and secondary MI prevention shows that about 50% of primary prevention patients and 67% of secondary prevention patients being adherent to their meds (having the med on hand 75% of the time is their definition). Yikes! Beta blockers are the secondary prevention med people are most likely to skip and diuretics and beta blockers are the primary prevention med people are most likely to skip. Food for thought.

I'm tired now and going to go to bed. I am happy to have felt appreciated and noticed today by the house staff (that's the technical term for residents and fellows). I hope you are feeling appreciated and noticed. I am even happier to be home. I hope you are right where you want to be tonight.

Day 94 - dose 5 coming right up!

Today was a quiet day of visiting with Eva, reading a bit, sending email and two miles of indoor walking (and art admiring!).

It was a nice day without a whole lot of excitement (just like we like our days in the hospital). Tommie has been asking for a while that I explain what rounding is, how it works, etc. and it is relevant to the most recent excitement here so I guess it's time.

When a patient is in the hospital, it is important that there is one doctor in charge of them or one ends up with the "too many cooks" syndrome. Therefore, when a patient is admitted, they are given a single "attending" doctor who is their main cook. It is usually the doctor who will care for the problem that most makes the person need to be admitted to the hospital, but not always. Some doctors (mostly specialists) don't have patients on their services and sometimes a patient will come in with, say, a broken hip, but have so many other medical problems that even though the hip brought them in, they are really better served by a doctor who can manage their diabetes, high blood pressure and heart failure. The attending doctor decides which other doctors can be involved in the patient's care, writes the admission and main orders (and in some hospitals, writes all the orders) and is in control of the general course of the patient's care.

Because doctors are human, most doctors admit to "teams" where Dr. A is the day time doctor, Dr. B is the night time doctor and Dr. C will be taking over during the day in three days. Sometimes the "team" aspect of the work is split up even more, especially in teaching hospitals. These teams usually consist of something like a first year resident, a second or third year resident and an attending (a fully trained and certified doctor who could practice independently). Sometimes there are fellows (trainees who have finished residency but are working on speciality certifications like oncology) or medical students. Different teams do it differently, but the basic idea is that there is a certain amount of "work" that needs to be done for each patient and they divide it up. Perhaps the intern (first year resident) will write the note (that serves as the main record for billing and legal purposes as well as to communicate with the rest of the team) and examine the patient thoroughly. The second year resident may double check the key points of the exam, and make sure the labs are adequately treated. The fellow may double check the key key points of the exam, chat with the patient, confer with specialists and then the attending writes the final billing note (mostly referencing the other notes, but summarizing them and especially if he or she disagrees with any of their conclusions, correcting them), examines the most important findings of the patient and answers the patient's questions.

Every patient in the hospital gets that done every day. Every attending or at least every team in the hospital has a list of all the patients they need to see every day. Seeing the patient, checking up on their labs, radiology, any tests or procedures they've had, producing notes and dictations as needed for communications and/or billing, conferring with other doctors who are caring for them, answering the questions, making a plan for getting them moving in the right direction and coordinating their discharge plans are the components of "rounding" on patients. Doing all of those things on all of one's patients is "rounding."

From the patient perspective, what rounding feels like in a teaching hospital is that a collection of people, some together and some separate come in one or more times per day. Here, for me, usually the attending comes in separately towards the end of the day. (Rounds start with sickest patients and discharges first. Also, sickest and most interesting are most likely to be visited by large groups. This explains why I get seen usually by people who are alone and at the end of the day.) In general, you want to listen to the plans of the attending because they are the ones who really decide the plans. Sometimes other people on the team are better at answering questions because they may have more time or more ability to understand what a patient might want in an answer. My current attending, like Dr Hill, is good at answering questions so that is nice, but not all have been.

I get attached to my attendings as they are the ones figuring out my plan and keeping me out of trouble. Because I understand that the attending is really the main cook of the team, no matter how many other junior cooks there are, when my attending changes, I really like to know. Perhaps if I did not understand exactly why the attending role was so vital to me, I might not be so concerned about their coming and going. I mention this mostly because in the past when attendings have left without saying goodbye, I have been unhappy and without a full explanation of how the attending thing works, it might not make that much sense why I would care if just one person on the team changes.

My attending, Dr Meehan, has two more doses of cytarabine planned for me in the next 24 hours and then I get to go home. I am very happy.

I hope you are happy with your short term plans, too.

Day 87 - more premedication

Since I ran out of time yesterday, today I drove back to Manchester and visited my office. Everyone seems to be doing well. I missed a couple of my pals and didn't get to visit the family practice side because I was running out of steam (sorry, I'll start over there next time so I can be sure to see you, Linda, ChiChi, Anne and other FP friends!) I did want to tell you about one quite moving experience I had. I saw one of my patients coming in and said hi, hugged him, exchanged pleasantries as he walked by with the MA to his room. I took care of his mother who died in my care about a year ago after I discovered her cancer was back. I was chatting with someone else when he came out and he came over specifically and said "I've been thinking and I don't know what you have, but you don't deserve it and I'm really sorry you have it." In light of the fact that his mom who was one of the nicest people on the planet had died not long ago from a disease she did not deserve, this really touched me. I was so glad he told me this and really value his thoughts and wishes and appreciate that he told me. He was clearly quite affected by my being an obvious cancer patient and I was touched by that as well.  When I regard myself, it seems like it's just me--not really interesting or out of the ordinary; I mean I spend 24 hours a day with myself. I forget the thing about how I feel about my doctors is how my patients feel about me. I am very lucky to get to be a doctor.

I also got some fabulous cards from patients who were doing well, but wanted me to know that they were coming back to me from their "fill in" PCPs, one who had gotten a successful organ transplant, one from my nearly oldest patient who is extremely lively and would be n good health for a 75 year old (except she's over 90).

Then I came home and tied on my warp and started weaving my newest experiment. So far, so good or at least no disasters. Terry has a friend who is a ceramicist. She told him once about something she had made that when it came out of the kiln looked horrible and it just happened to break. I was thinking how tremendously satisfying it must be to just drop and shatter your work that you don't like. When I don't like something I've woven, I can cut it off the loom, but it doesn't really get destroyed and it would not be very satisfying to cut it into bits, but to just drop something and have it fly into a whole bunch of pieces, gone forever! Maybe I'm in the wrong medium.

I also voted and went for a surprise three mile walk this afternoon. There were no stickers in Exeter which disappointed me.

This evening was back to school night for grade six so I went off to middle school. I was expecting to be unimpressed (because honestly we didn't like the middle school much when Emily was there), but I was actually quite impressed with Ellie's teachers, their attitudes, organization, how smoothly the whole thing went, etc. I had been hopeful for a good year, but now I'm really expecting it. We hear every year about how wonderful her class is, that they are kind to each other, that they are respectful, conscientious, pleasant. They already went on a field trip to Pawtuckaway and the teachers said they had never done that in the second week of school before. One of the teachers said for the first time in 28 years of teaching she was not using a seating chart. The vice principal said that the teachers at all the feeder schools said that this year was filled with extraordinarily nice kids. What a tremendous piece of good fortune for Ellie (and us).

That pretty much sums up my day, another really lovely, low key day filled with pleasant activities. Patrick asked me to recount the specific incident that made me feel like Dr. Hill thought similarly to how I do so here it is.

I think this happened on my very first night in Lebanon. When I first was walking into the liquid tumor ward, I saw a man with "John Hill" written on his lab coat so I stopped him and said that I had been instructed to hand these (my slides) only to him so here they were. I actually thought of something Patrick says and handed them to him with two hands. They were in a little cardboard box that looked kind of like a folio. He came back hours later after having looked at them and asked for my story and gave me the scoop as he saw it. You may recall how I got my diagnosis. Briefly, I had a virus in March, felt really really terrible and got a set of labs, really just for entertainment purposes because I felt so terrible. My ANC was 700 and I was a little anemic and leukopenic but had no blasts. I thought I am probably B12 deficient, let's take some B12 and recheck in a few weeks. Weeks turned into months and I rechecked on June 14, with a marrow to prove the leukemia on June 15.

When we went over my case, one of the things we really focussed on was why were my labs terrible in March? Dr. Hill didn't think the time course was right for that to be early leukemia and thought it might have been a pre-malignant condition (myelodysplastic syndrome MDS) which would alter the treatment plan for the AML if it were. We talked a lot about that and the implications and if there were any other blood test I had had around anywhere and then he offered that he didn't think it would have made a difference if I had gotten the lab work done sooner. I was feeling pretty foolish and badly for not having taken better care of myself and done them sooner, but I didn't think I had voiced this thought so I was a little surprised that he had picked up on it. What came next was what really got my attention however. He then said, "That's really what I think. If I thought it would have made a difference, I would tell you if you asked. [pause] If you didn't ask I wouldn't have said anything about it if I thought the delay would have made a difference." This answered exactly the question I was thinking, but was not going to ask. It is also exactly what I have said to patients, and without being asked, just like in his case. I think it is probably in the doctor communication books "too much information," but I wouldn't be able to stop myself from saying it because it is very important to me that my patients really feel I am honest with them. I felt that Dr. Hill's telling me came from exactly that same impulse--a little too much info, a little off track, but so important to the relationship that he couldn't let the moment pass without saying it.

Maybe you feel like this is standard stuff, but I don't think it is. Offering the reassurance without my asking for it and then offering reassurance that he wasn't just saying it again without my asking and finally the TMI topper of "I just wouldn't say anything unless you asked if I thought it had caused you harm" without any request for clarification on my part was such a familiar train of thought to me that I really felt like I could trust him. Here was a person I understood and who would understand me.

Of course, a relationship is not built on one moment only even a fabulous one, but rather many hundreds of little moments and there were many others, some of which I've mentioned and some of which I will mention as they happen or as I have a day without much else to talk about besides a conversation from two months ago. This, however, was when I decided that I would be OK in Dr. Hill's hands.

I hope you are able to relax in the care of your very own doctor. If not, don't be a knucklehead like me, go get yourself a doctor you are comfortable with and visit them.

Day 80 - I'd rather have a normal day, thanks.

So, today I had a set of labs done at the NCCC in Manch. Dr. Manno had wanted to follow my platelets and hemoglobin to normal. The labs were a little surprising today; we were not able to follow my hemoglobin or platelets to normal today. Or, more worrisome, even my white cells. My hemoglobin had improved to 10.5, but my ANC had worsened to 1230 and my platelets were still low at 104. My liver and kidneys remained normal. This far out from chemo every time we check my labs they should look more and more normal until the next consolidation and these labs looked less like normal in two of the three cell types. To me this looked like a catastrophe. (Remember I'm good at jumping to the very worst possibility.) I was sure the leukemia was back with a dozen of its biggest and meanest cousins and I was worried. OK, I was more than worried and sure I was heading toward a transplant and all sorts of bad stuff. Maybe I should stop reading the primary literature on AML.

I called Dr. Hill's office and left a message with the secretary. I waited a whole hour and then half an hour more and then I couldn't take it any longer so I called and spoke with Dr. Hill's nurse, Elise. I have spoken before with Elise and she has always been extremely helpful. I think she was impressed by how anxious I was about this and told me that she would be sure that Dr. Hill saw my labs but he would probably be unable to call me back until 4:30. (Note number one, be sure the person taking the message understands the urgency to me of the message. Note number two, it really really does make a difference if you give people a time to expect an answer.) Dr. Hill did call me back at about 5:30 and pointed out that I had had a bad cold last week and that that was probably what caused the drop in my counts. O, yes, that. Remember those quaint old days when I would have some symptom and say to myself, "Something could be wrong with me or I could just be overworking; I'm sure it's overwork."? Now, almost any symptom can and will be attributed to the return of the leukemia. Dr. Hill further told me that he could not promise me that it wasn't badness causing my labs to be weird, but that it was much more common to be due to a cold. In fact, he had seen suppression of cells due to virusses a lot in the past and had seen it due to leukemia relapse much much less frequently.

He also pointed out that my hemoglobin was improving which is not what we would expect if it was the leukemia causing the drop in white cells (if the leukemia was back, one would expect it to make all the cells decrease) and he reminded me that my leukemia has been very well behaved so far and recurring so early and during active treatment would not be consistent with what we have seen of it so far. OK, deep breath.

I was reminded (and I told him) about how a big piece of what doctors do is holds patient worries for them.  I cannot tell you how much better I felt after talking with him. Now when I have doctor/patient events like this, I try to remember to turn it around and think about being a doctor myself. I can recall having conversation when my patients either said they felt or clearly felt tremendous relief and am amazed that I can do that for someone, too.

The plan is to go to Lebanon tomorrow and re-do the labs there. Then I will see Dr. Hill, we'll look at the results (he'll probably ask the pathologist to look at the smear too) and decide if it looks reassuring or potentially bad. If it looks potentially bad, we'll do a bone marrow biopsy right then. If not, we'll drive home and I will not get another hole in my iliac crest.

I can't remember if I've mentioned that after the whole leukemia treatment thing is done and a couple years behind me, that I have wondered if I would use my bone marrow biopsy scars as the basis for a tattoo. Not quite sure, but maybe and, if so, I have some starts of ideas. The funny thing is I'm not quite sure how many scars I'll end up with so how exactly can I design around that?

So, today was filled with a lot of worry, but I was able to soothe myself pretty effectively with weaving. I am making a pillow for Tommie's office and yikes! it just flew this afternoon although I did seem to do a lot of unweaving and re-weaving. I am really pleased with it so far and cut it off the loom less than an hour ago. I went to finish it and d'oh! I have not a single spool of thread in the house. Not a one! Not even a bobbin that I can pretend is a spool of thread. I am thinking of running up to Walgreen's right now so that I can finish the pillow tomorrow morning before we have to leave for Lebanon. Can you tell I'm excited about it?

Other than worrying and weaving today, I didn't do a whole lot although Ellie and I made a trip downtown after school. She got her usual sandwich from The Green Bean and I got some really delicious fish chowder from Loaf and Ladle. I was disappointed it was not clam chowder before I took my first bite, but that didn't last long. She was not disappointed by her sandwich from The Green Bean. It has three ingredients and always tastes exactly the same.

So, today's news is not the best news I've ever given in these pages, but I'd like to encourage you to think it's going to turn out to be viral. I am really no longer anxious about it and wish that you won't be either. I'll let you know tomorrow if my labs were reassuring or worrisome (or most maddening, in the middle) and if I am the proud owner of a fourth hole in my back or not after we get back from Lebanon which will likely be five-ish.

I know you will be praying and thinking and hoping for me and I appreciate that. Thank you.

For all of us, good news and a surprisingly good bowl of chowder.

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 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.

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.