Monday, March 25, 2013

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.

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