Saturday, June 26, 2010

things work out

I set myself a task of "getting the word out" about ThyCa East Valley while the kids spent their mornings at school. I admit to some procrastination about it, but finally this week I put together folders with samples of the patient pamphlets we provide, the Low Iodine diet guidelines, the resource list, plus ThyCa cards and several of my own business cards. I used MapQuest, Google Maps, and my own insurance company's list of endocrinologists in the East Valley, and mapped out a route that took me to all their offices so I could drop off the packet and ask them to let their patients know we exist.

The first day's driving around taught me I need to do due diligence before I start driving around. Some doctors have moved their practices, one seems to have completely evaporated -- and two addresses I accidentally put in Chandler when they were really in Mesa, which didn't help.

Eventually I got around to everyone that's still here, leaving Banner Baywood, the farthest out, for Friday. Banner Desert has a Cancer Center, and I met the ACS rep who works there -- she was delighted to get the information. I learned in one of my (long) drives that Banner Gateway doesn't have a cancer center - yet -- they're building one in partnership with my old friends, M. D. Anderson, that will open in Fall 2011. So before heading out to Banner Baywood, I checked it out on the web, which really gave me the impression that they had cancer services similar to those at Banner Desert.

The reality is, there is no Cancer Center nor are there Cancer Navigators or any other care providers specifically dedicated to cancer support at Banner Baywood, or if there are, no one at Banner Baywood knows they exist, including the people at two different information desks and in the HR department. I ended up leaving my information for the oncology data services guy, who for some reason was out of his office, but the staff that was there thought he was the closest to what I was looking for.

That was frustrating, and the frustration continued when I tried to locate the doctors that both the online directories and my insurance insisted had practices and offices at Banner Baywood: one doesn't exist, one is a cardiologist, who for some reason is showing up in various directories as an endocrinologist.

In all, I spent more than a half an hour there being bounced from office to office only to find out that there really wasn't anyone there for whom my information was in any way useful.


The signage at the hospital is not as clear as some I have been in. The first door I entered, I thought it was the main entrance, but it was in fact outpatient registration. The woman at the desk referred me to another woman in the office around the corner; she was helpful, calling HR to see if they had any information that could help me. As she spoke on the phone, I noticed she had a tiny little scar below her throat, from a fairly recent surgery. After I thanked her, I asked her if she didn't mind, would she tell me about her scar?

She had thyroid cancer, and was about to go for RAI. She had never heard of ThyCa, and never talked to anyone about what to expect from her disease or how to manage it. I gave her my card and encouraged her to check out the ThyCa website and to call me if she had any questions or just wanted to talk. She took my card and placed it very carefully in her wallet.

I ask, "What are the odds?" but I don't think odds comes into it, with something like this. There was no reason for me to walk in that particular door -- it was, in fact, a mistake. There was no real reason for the first woman at the desk to refer me to the second woman, either -- she should have sent me to the main information desk, which was one entrance over. But I did go in that door, and I was referred to the second woman, and I noticed her scar, and gave her my card.

An hour on the road, another 30+ minutes wandering around, redeemed.

Thursday, June 10, 2010


Amitriptyline helped the headache, but put me in a permanently pissed-off state. Plus, my throat is absolutely killing me -- the drug intensified my relatively mild dry mouth problems to the point where I have no saliva to swallow. Ick.

Very pleased, though, with the neuro's office. I called at 10AM and explained the situation, got a call back at 1PM with orders to discontinue, and a new prescription was phoned in -- we're giving Depakote ER a try, we'll see how that goes.

Thursday, June 03, 2010

as usual

Every test came back normal. That's good news, of course, but frustrating since I don't feel well.

Today is my first day on amitriptyline. It's supposed to prevent the headaches, which the neuro is convinced are migraines. It's main use is as an anti-depressant, but off-label use as a migraine preventive goes back at least 10 years.

Main side effects: drowsiness and dry mouth -- check and check. I took it at about 10PM last night, hoping to abate morning drowsiness. I got up with the kids at 6:30 and got them off to school, and promptly fell asleep on the couch from 8:30 to 10. It didn't really help that much, I still feel background fatigue. I'm also grouchy but that could just be because I'm irritated that there's nothing "officially" wrong and that doesn't align with what I'm experiencing.

Apparently it takes about a month for the amitriptyline to actually do anything regarding preventing the headache. We'll see if I last that long with it.

Wednesday, June 02, 2010

neuro tomorrow

Later today, actually.

If it were something really serious, they would have contacted me already.

That's my theory and I'm sticking with it.

(Still no word from the gyn, but working on the same theory there, too.)