Saturday, April 28, 2012

Visit to "Memorial" or Mecca?

Mostly taken from notes that Elaine made during visit.

Kate and dear friend Elaine and I went to see Dr. Brown at “Memorial” Sloan Kettering Cancer Center. MSKCC. (I am overwhelmed with the basic size of the institution.There are thousands of employees. I also learned, it is not unionized.) I thought we were gong to get an update on what was learned from the new Catscan at our last visit. On the way home by cellphone we learned that growth in Pancreas was inoperable because it was on top of an artery. Also that there were spots on the liver that were suspicious that cancer had spread. Before leaving we were given our next appointment with Dr. Brown.

We had hoped that Dr. Brown could answer the question, If the liver and Pancreas cancer are the same, it is assumed in 99 percent of cases, then what can be done about it? Or what is the intervention ? Nope that didn’t work. Dr. Brown explained that she was just a “procedure doctor” who would do the Biopsy. An analysis of that effort would go through the lab and then we would hear about a plan for intervention. Of course my concern is if there is no really good intervention why bother? I prefer what good days I can pull out of this time of my life than some kind of Cheemo that will make what I have left miserable. What’s the point?

I do appreciate the work being done at MSKCC and yet an institution that big can’t help falling into role playing. “I just do this part.” Someone else on the 4th floor will do your blood work. The 3rd floor person will do your EKG. and so on. Each did their job well I am sure. What I am not sure is how this place can manage not to begin to feel like a factory with each person playing a role. “This is what I do so don’t ask me about anything else.” Here I am thinking as a Sociologist. How can that be avoided in an Institution the size of Sloan Kettering? Don’t know. Still would love to know the answer to my question?

We’re home. It’s late. I get an e mail from Elaine. Found a Doctor at Stony Brook who has developed an electrical shocking system for killing cancer cells with out destroying the surrounding organ. I’m curious. Its where my Internist works. He’s in Madagascar. Gets my e mail on the Doctor involved. He’ll speak with him when he’s back on Tuesday. I wonder is this just another “Hope Ring.” I remember one where a doctor in Mexico was curing Cancer with Almonds. People in my situation who are still feeling pretty good have a lot of trouble with just quitting. “Damm there must be something I can do beside pray.”

Well in the meantime I put in a nice day in the shop working on Thomas Jefferson's Stand Up Desk. Not a simple piece of furniture as it is built to do a variety of functions. Doing the best I can short of actually knowing him.

2 comments:

Jean Freeman said...

Thanks so much for your forthrightness, Bob. As a long distance friend, I so much appreciate knowing what's going on; and you and Kate are constantly in my thoughts.

As to your sociologist's question, apparently it is possible for such a large institution to do a better job than MSKCC seems to be doing in coordinating patient care. In the healthcare delivery field, the Mayo Clinic is frequently cited and studied for their exceptional attention to the patient experience. Living in their back yard, I know a number of people who've been there for care, some for highly complex conditions, and they uniformly extoll the experience. So don't be too quick to let MSKCC off the hook, although I think they're more the norm than Mayo.

Judy Greene said...

Hi Bob

I just talked to David, who told me about your dreadful news. That sent me to the blog. I thought I'd check in to say that I will be keeping you in my thoughts as you traverse this difficult landscape.

I assume David told you that I've had my own bout with the Big C recently -- a rather nasty form of it, also -- but the wizards at Sloan have pulled me through, and I am feeling great. After more than a year of misery, I am back at titling windmills and loving it!

Yes, they do compartmentalize the services at Sloan, but that means that you get each aspect of your treatment handled by a doc who is at the absolute top of their game.

My experience is that they are a real team. Every time I see one of my docs (I have five -- an oncologist, a surgeon, a gastroenterologist, a pulmonary specialist and a shrink -- and that's not counting the folks who do lab tests, anesthetics, CT scans, PET scans, EKGs and sonograms) they have read up on all my notes and consulted each other if needed. And each of them gets five stars for "patient experience" as well as the nurses and office staff.

These days I mostly see my oncologist -- who is a goddess and a true healer.

I'll be reading the blog more frequently now. Please keep blogging, and stay strong!