If it's to be, it's up to me.
-- Signoff every morning over the public announcement system at the elementary school where I tutor reading.

Bring it Under Your Own Umbrella (and keep a notebook)
Finding -- or Being -- a Case Manager

One of the problems with health care as we now have it is that it is so fragmented. Once you get a cancer diagnosis, this only gets more so. There will be a lot of doctors involved (and yet no one of them will be involved in everything). There will be nurses, some you’ll actually get to know and some who cycle through in shifts and you never see again. There is something I’d never heard of before called a physician’s assistant, and there are plenty of ‘em. There are other assistants who process you through every visit, weighing you and taking your blood pressure and getting you to answer questions for the computer records, the exact same questions which you will be asked again and again. And again and again.

In spite of all these many individuals, I wanted more. I wanted to include naturopathy, acupuncture, and anything else that might help. I know from friends and family in Japan that over there, they have some of these things and Chinese medicine along with western medicine all under one umbrella. We don’t do that here. So I made my own umbrella.

I was grateful for everything that western/modern/conventional/”real” medicine had to offer as standard of care for my particular cancer. It was considerable. At first I felt like I was cheating on my doctor if I went outside for what we call alternative medicine. How dumb. It doesn’t have to be alternative to anything because why the “either/or”? What it is, is supplemental. My doctor didn’t take any offense when I told him what I was doing outside his treatment. He even asked me what reiki was. (And a couple of years later, I notice that my cancer clinic now holds a class for family members in how to give reiki to the patient. I like to think that’s my influence.)

I want to stress that I followed every instruction given me for how to undergo my cancer treatment under the guidance of my oncology center. And then I also rocked the woo-woo. I told them what I was doing and made sure there were no contraindications. I told all my woo-woo practitioners what else I was doing, too, for the same reason. By running around and keeping them all informed, I kept them under one umbrella.

That said, here’s a tip that I learned from watching the students I knew when I worked in offices at first Harvard and then Stanford. They were not shy about getting to know everybody on the office staff and getting us to know them. It worked to their advantage in numerous ways. When I was attending [a non-ivy league] college, I was too shy to do that kind of thing, it felt like imposing on people or drawing undue attention to myself. When I landed in the cancer center, I couldn’t afford to be that shy. Taking a cue from those “successful” students, and after a few false starts, I discovered one of the nurses who kept track of the doctors’ cases and made it a point to visit with her every time I was in. She was one person who I
knew really got to know me over the course of the crisis. She knew what I looked like every week over time, what was normal for me and what wasn’t, what my issues were. I felt a lot safer for it. She also knew how to talk me down out of a tree when I got het up about something, and this was powerful medicine. (On other parts of this site, this is whom I mean when I refer to my nurse/case manager.)

And, I kept a notebook. Early in the crisis, I bought a very big three-ring binder and began to put all my paperwork in it. I asked for printouts of my blood tests during chemo, I asked for my pathology report, I asked for my CT scan writeups. All of these went into the book. So did notes from my doctor visits, articles I cut out of newspapers and magazines, pamphlets – everything. (While mapping the genome, they found the spot for endometrial cancer and are working on new targeted therapies and I can’t get enough of that news. Into the binder it goes!) Whenever I've asked for printouts of any medical record, I've gotten them. I’ve even got some CDs with jpegs on them. I don’t know if this is unusually cooperative of my doctors or not because I understand that
some people have encountered problems with this.

could go ahead and stick these things in the cloud if you want, and I wish you luck. Just remember the time all those celebrities had their nude pictures released across the universe. I know some people think the internet can be made secure enough for medical records, because just look at online banking. But my sister who actually worked for a bank won’t touch the stuff, which is something to think about. And I was there when the above mentioned Stanford had a security breach on a slew of electronic personnel records, social security numbers and all. Mine included. Twice! They who are the crown jewel of Silicon Valley. Anyway, we’re still not there yet with medical records. I was astonished to find that even within a big hospital system, the computers don’t seem to link up. You will be asked questions on one floor of the building and when you go to another floor have to answer the same questions again for the computer there because they can’t access the information already in some other part of their system. If you travel out of the building, even though it’s between affiliated sites, it gets exponentially worse. Place the emoji you find most appropriate right here.

While we’re waiting for some unknown “them” to get it together, there is no one out there who cares more than you do about keeping things all in one place. And this may be a good thing. Because in my experience of checking in with so many different practitioners, it was a hard truth that every one of them was wrong about at least one thing and every one of them was right about at least one thing. There is information in that fact alone. In any case, if you want a complete and accurate record close to hand, start keeping it yourself. ###

Further reading:

Effective Ovarian Cancer Treatment is Underused, Study Finds
NYT, August 3, 2015

Slogging Through Paperwork Ends with 'Thanks'
By Diana Dyer

Illustration from my sketchbook.