Sunday, December 2, 2012

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.

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