All day, thinking about what do I need to do to prepare for the doctor appointment, for my presentation on Thursday, for the public forum I’m chairing on Saturday. Revise slides, update wiki, contact potential speakers, check the note for the doc in Google Docs. Change nothing, work on presentation slides. Check Google Docs. Add five lines, reprioritize my goals for the conversation, but the computer crashes. Typical. Did I lose my work? I don’t care, I tell myself, it’s all in my head. I work frantically on actual job work for hours without a break, avoiding the other.
When the clock says twenty minutes before time to leave, I make sure I have complete copies of all the articles and the Google Doc as a Word file on my memory stick. I clarify final formatting to make it easier for the doc to read.
First, options for the intervention, numbered and arranged in priority by What I Think I Want
to have happen. The What
. Bulleted, in brief statements, with terse clear bits of supporting information inserted below two of them. No more than three supporting statements per bullet. The Why
. Next, a couple possibly related questions or symptoms. Lots of white space. All of this takes only half a page. Somehow it seems like it ought to be more, but it is enough, and better not to complicate things.
This section is a couple pages. Citation, excerpt; citation, excerpt for each of the decent quality articles I’d found with any relevant content. Highly selective.
I had fought all weekend, searching for information on this topic. It was hard. I’m an exceptional searcher for health information, Pubmed or Google, doesn’t matter, I’m good. And I was struggling to find anything decent. I did find some, but it was really an exceptional challenge. Ironically, the article that proved to be the breakthrough piece did not come from my searching and was not indexed in Pubmed, but was rather something a friend passed to me. Where I did find useful content it was usually only a couple lines or a paragraph in each article. Together, they started to show a pattern, but as I searched, I was less and less surprised that the clinicians didn’t know much about this, and that acceptance of the treatment tended to coalesce in pockets around the few individuals experienced with it. An interesting example of Communities of Practice.
I couldn’t give the doc a fat pile of paper. It just isn’t reasonable to expect him to dig through all of this like I was doing! So instead, I went through the articles. Highlighted the brief relevant passages, and copied excerpts beneath the full citation. The PDF of the full articles was on the memory stick. I had spent the weekend cramming for this meeting as if it was a final exam, except that I never crammed when I was in college.
Name, rank, serial number. Well, really, names of two docs, their research credentials, and contact information.
There were names of three authors that appeared over and over. For two of them, it was clear from the articles written that they weren’t just reading about doing this, but practicing it. Pubmed gives contact information of the main authors, but they had changed jobs since the articles were written. This wasn’t something Google made easy to find, either. Search by someone’s name, and chances are you’ll find an old address or a different person. I tracked them down, again, hopefully saving my doc some time and making it easier for him to advocate for me, if he agreed to do so.
I arrive at the doctors office almost an hour early, with a big fat book to read while waiting, prepared to wait. I didn’t even get my coat off before they called me, and he was in the room almost instantly. I had my two short articles and 4 pages of notes prepared, out and ready, but hid them under my coat.
We were both calm and lowkey for the most part. I started out telling him exactly why he is the clinician I fight to keep as my primary care each time they upgrade the systems. He listens. He’s open minded. We communicate well. He is accessible through multiple routes. He opts for conservative treatment and interventions, low cost and low risk. It helps that he is trained in public health as well as medicine, and that he is brilliant. And then there is the little matter of his having saved my life when all the other docs gave up. I don’t want him to give up this time either.
The conversation, while a good one, had a rather surreal quality for me. One moment with that out-of-sync quality was after we’d documented why I absolutely cannot have steroids of any sort in any form. We went roundrobin a bit about medical history that was putting this stressful circle in place, like a worm ourobouros, the end leading you back to the beginning.
1. Planned surgery for oronasal fistula behind a slow bony growth midline at the juncture of the hard and soft palates.
2. Imaging required to determine both the type of bony growth (probably either an osteochrondroma or a chondrosarcoma) and the blood flow in the area. Best imagining test for this (by far) is CT with contrast.
3. Because of history of both shellfish allergy and idiopathic anaphylaxis (don’t forget asthma!), contrast cannot be used without steroid prep.
4. History of steroid psychosis with sudden onset at small doses makes steroid prep highly dangerous.
5. Shampoo, rinse, repeat.
You see why I really didn’t want to talk about any of this? Didn’t want to think about it, but couldn’t NOT think about it. The word “psychosis” just kind of gets that reaction, even when it has nothing to do with you as you normally are but is something inflicted by taking a pill. I also didn’t really want the world to know you can slip me a mickey and get some pretty wild reactions.
The surreal moment came when I looked my doc in the eyes, and appealed, “Do you know why they aren’t considering an MRI with gadolinium contrast instead? I heard the imaging quality in the head is close to equivalent, and the tolerance is better.” You would think I actually knew something, wouldn’t you? I had a little trouble believing those words came out of my mouth. It sounded so reasonable. Amazing what motivation and study can do. Having friends who are doctors doesn’t hurt a bit either.
To shorten the tale, he agreed an MRI, or actually an MRA, made a lot of sense with my history, and that he would check into it. I told him I understood the case is not just medically complex but also politically challenging. He nodded. I said I wanted to reschedule the test for later, partly to give him time to work this out and negotiate the details with his colleagues, and partly because I have a lot of professional obligations on my plate right now, with one big one being part of the program planning committee for a two day conference in the middle of March. Doc quipped, “You mean you’d like to be sane for that?” We both laughed. At the end, I summed it all up.
“Right now, this is a lose-lose. The choices I have are both bad, and there really is no choice. Tell me to pick between maybe a slow growing bone cancer OR … “
He finished, “… instant psychosis. You’re right, there’s no choice.”