Day 285 - the leukemic and not clearly thinking

I've had some really nice patient interactions recently. I've seen a patient so delirious he was requiring a person to sit with him all the time clear up enough to tell me he really didn't like Barack, but "he's the president so there's no use complaining about it." I had an actively dying woman squeeze my hand on request after her family had given up hope of being able to hear anything else from her. I really like my job and the things I get to participate in every day. I am tremendously lucky.

I saw another delirious patient today (that is evidently my theme for the week). She was much less delirious and could have a conversation and in fact doubted that she was confused at all even though people seemed to be thinking she was. I don't usually talk about myself with patients, but I told her that I had had cancer and that when I was getting chemo and my husband told me I was not thinking well enough to drive that that was really the worst thing for me. The more I tried to prove to him that I was thinking well, the more I sounded like a person who was not thinking well. She agreed with me and I felt her soften a bit and felt like she was willing to listen to me where she had not been so much before. I told this story to her nurse whose response was "Even you with all you know had a hard time with that?" There are some things that education and knowledge do not protect us from. I think for me the fact that so much that is important to me in my life happens in my head made the whole experience of not thinking well even worse. Evidently some famous person has talked about "a million dollar experience I wouldn't pay two cents for" and that is such a good description of the leukemia. I never understood how horrible not thinking well would be and I was just subtly impaired. I cannot imagine how scary the world must be when everyone around you seems puzzled that you are talking about the basement of a concrete slab building.

This is a street in the French Quarter and don't you tell me otherwise.

Those powdered sugar deep fried beauties there are called beignet (said bin YAYs) and they are about as delicious as they look.

I loved the trees framing the old brick building and the new building under construction. Sometime I will learn to crop photos and then they'll be nicer. This was taken through a bus window in motion.

I am thankful for the beauty and interest I feel in the world. Those are qualities I have not always found in the world and I am much happier when I can see them. I am hopeful to always have that gift. For you, too.

Day 284 - more conference summary

The window is actually a whole story high and inside is a room sized sculpture that you can climb inside of and climb into the second story of it. It's made out of scrap metal and old car parts and wood. Some parts move and you can clank them into each other for gong kind of effects.

The Mississippi River in the other direction and some bridge or other.

I enlarged this so you could see the float driving down the street. We saw lots of parade like things while we were in New Orleans. The locals did not bat an eye at multi-colored things driving down the street while we were all agape, "Is there a parade?" Things like that just don't drive around Manchester.

Now that you're in the mood for more New Orleans, I'll finish the survivorship lecture. He finished by talking about that curability of bad cancer has not changed; what has changed is that people are surviving longer. What is funny to me about that statement is the old saw that "life is a sexually transmitted disease which is universally fatal with no cure." I wish I had gotten more details on exactly what he was talking about because he gave survival times for advanced cancers: colon at 22 months, pancreas at 11.5, lung at 10. I wish I had the source and could find out more about those numbers.
I went to a case presentation of a patient with borderline personality disorder who was dying from her cancer in an inpatient hospice unit. They gave specific details of the behavior and the intervention, but the take home was that in their case it worked really well to have the behavior clearly identified (pick your battles), limit set in a way to make sure the patient didn't feel abandoned, have everyone respond exactly the same way (to the point of here are some specific words to use), to define consequences clearly to the patient. In the case they gave, the consequences were that the patient would be discharged from the hospice house and go back to the hospital. This particular patient was such a good staff splitter that they had to have the nurse that she had put in the "good nurse" column off from work while they implemented the behavior change plan. They talked about borderline personality disordered patients as having three states of feeling: held (the ideal state), threatened (where the undesirable behaviors come out to help the person feel they are getting back to held) and alone (where the person gets impulsive, dissociated and, at worst, paranoid). I think I can recognize BPD in patients, but had never been walked through here's what's going on or here's what to do about it. Interesting stuff.
Otherwise, today was spent about half and half in patient care and filling out the dreaded hospice certs and other forms. Not too bad.
I am thankful for Terry's new bike and the fact that it is warm enough he can ride it. I am hopeful for continued thaw and de-snowing of my neighborhood.

Day 282 - we read books

When Emily was in town, we went to Water Street books because like any comp lit major who is thinking about library school, she loves her some books. I bought Emily a novel she had been longing for and had it wrapped for a present. Then I saw a book titled "Until I Say Good-Bye: my year of living with joy" which like any hospice and palliative care doc worth her salt, I was compelled to pick up. It is about a year in the life of a woman with ALS. It is not an uncommon doctor sentiment that ALS is the worst disease in existence and Susan Spencer-Wendel writes about facing the disease, deciding she is going to enjoy the time she has left and concentrate on helping her kids build good memories. What a fabulous book. I am happy to loan it out when I am done and highly recommend it for everyone, medical or not, hospice or not. Here is a tiny bit: "When I think of which role is worse--to be the spouse dying or the spouse surviving--I think it's the latter. The survivor will experience the same grief, will live the grief of the children, then must assume the responsibilities and slog on." Let me know when you want your turn with the book.
In other excitement, now that I am cooking something most weekends and freezing half of it for lunch, it's kind of exciting to take something out of the fridge and find out five hours later what's for lunch.
Here are some photos to get you in the mood for the next topic.

The Mississippi River is wide here. The train whistles were blowing in the background, there was a gentle wind. It was 50 degrees.

The church is the big cathedral in the French Quarter. In front of it is the famous park in the French Quarter and the clouds are lined up perfectly to draw your eye upward. There was music coming from a little brass band in front of the church and also from a guitar player a block away and to the right. It was very comfortable there.

I am working on an email to send out at work about the Home Health and Hospice Care-relevent portions of the AAHPM convention which I will probably post here at some point in the future.
For now, I'll tell you about the Cancer Survivorship lecture I went to. There were a whole bunch of speakers which is always a good plan to keep people awake especially if you have a lot of information to get across.
There are 13.7 million cancer survivors in the U.S. with 64% diagnosed five years or more ago. (The current definition of survivor is anyone with the diagnosis, as soon as they are diagnosed.) They talked about the nuts and bolts of what does a palliative care consultation for a cancer survivor look like, what kinds of symptoms get managed in a survivorship clinic, what is a survivorship plan. The most interesting thing they talked about were the psychological issues: in the personal domain (the "new normal," body image, sexual health, fertility, coping strategies and the implications of having lost one's safety net), in the interpersonal (caregiver distress, changes in roles, support networks and intimacy), psychosocially (loss/anxiety over future accomplishments that are lost, fear of recurrence and death) and in the socioeconomic realm (bills, insurance issues).
A surgeon got up at the end and talked about how she was creating survivors and how these stage 2 colon cancer patients usually did not even need to see an oncologist; they had their surgery and they were done. I feel, after the intensity of the treatment, somewhat out flapping in the breeze alone myself at this point, and I cannot imagine what it must be like to be in the position of one of those patients. After your surgery and your post-op care, you're done. You've had this huge diagnosis dropped on you and you get almost no support from the medical system for it. I mean, you're likely cured and you're grateful and all that, but it's still a huge diagnosis to get. I see a little bit why survivorship clinics could be tremendously useful to people.
I am grateful to have a job that is so endlessly fascinating. I hope to practice with skill and more each day. I hope you are intrigued by whatever you have to spend the majority of your hours doing, too.