Oh, no, askye, I'm so sorry!

My favorite Library Books on the Kindle not-a-feature is that if you turn on airplane mode, the books don't autoreturn, so you can get some extra time to finish.

Ooh, I'll have to try that next time I'm running out of time on a library book. (I use Kindle on my iPad for books I'm reading for the first time, and on my phone for comfort rereads, of which I always have at least one going. I didn't ever plan this distinction, but somehow fell into it.)

Ugh, askye, that's horrible.

So this morning I was supposed to have my mammogram. Some of y'all may remember that the pathology report from my breast reduction back in January turned up various atypical and possibly precancerous cells (atypical lobular hyperplasia, focal flat epithelial atypia, and atypical lobular hyperplasia). I discussed this with my surgeon and the breast clinic at the hospital where I had my surgery (Virginia Mason) and we agreed that an appropriate plan going forward would be to continue with annual mammograms, but add a second type of testing (probably ultrasound), probably six months after the mammogram for a belt-and-suspenders type approach in hopes of catching anything cancerous at an early stage.

This was supposed to start with a mammogram 6 months after my surgery. Now, almost all of my hospital-connected medical care, including my annual mammograms, has been at UWMC-Northwest, which is super close to my house, rather than Virginia Mason, which is not. The only reason I ended up at VM for the breast reduction was that UWMC plastic surgery wasn't accepting new patients for the procedure at that time. I decided to go back to UWMC because for anything ongoing I'd rather have the place that's 5-10 minutes from my house and doesn't involve wrestling with downtown Seattle traffic, thank you very much.

Unfortunately this requires the always-chancy handoff between two different medical systems! But I thought I had things under control. I called back in May to make my appointment, and I told the scheduler at the time that I had these pathology results from VM, and that my care plan was going to need to be revised accordingly. He went ahead and scheduled the mammogram, and I figured I'd discuss it with the UWMC breast clinic folks at the time and talk about scheduling an ultrasound for January and so on.

But then when I got there this morning and described the situation, they decided they couldn't do my mammogram, because I was scheduled for a screening mammogram, and I needed a diagnostic one. Which they not only couldn't do then and there, they couldn't even SCHEDULE it without having VM send over my pathology results--my pulling up the PDF from my phone wasn't good enough. They promised to follow up with VM and call me later, and oh by the way they're already scheduled out through the end of August for diagnostic mammograms.

I was already on the verge of tears out of sheer frustration (and fear, too, because the tech who'd been going to do my exam said something like "this makes you much higher risk!"), but I didn't want to lose it there in the clinic in front of the staff and other patients, so I went and sat in the outpatient building lobby and found a relatively quiet spot to cry and text Dylan. I mentioned to him that I wished that there was someone there I could talk to, like an on-call chaplain or counselor who could help me calm down, or even that I could go back into the clinic and just get a better sense of what was going on and how concerned I should be about the delay. He encouraged me to do exactly that, so I did. They were very nice about it and had a couple of radiologists talk to me. After reassuring me that the kind of delay I was looking at wasn't that concerning, given the recency of my surgery and the fact I've always been good about getting my annual mammograms, they took me out to talk to their scheduler to make sure she had everything she needed...

...which is where I discovered that not only did they need the pathology report from VM, they also needed an order from my primary care provider for the diagnostic mammogram. I don't know why the first person I talked to didn't think of that, but if I'd done the stoic thing that I thought I should and not gone back in to ask for more help, who knows how much longer it would've taken me to find out?

Anyway, in between trying to focus at work I wrangled the pathology report out of VM and the referral out of my PCP, and finally late in the afternoon the UWMC scheduler got back to me and was able to get me an appointment on 8/11, only it's at a different location where they had earlier appointments but is just as much of a pain in the ass to get to if I'd just decided to stick with VM for all my boob health needs going forward.

I know all this could be so much worse, but it's still damn frustrating how hard it is to coordinate health care in this country. I tried to do the right thing and communicate what I needed all along, but I still got tripped up by what I didn't know I didn't know.

Susan that is really frustrating. The medical system really does suck.

It's insane. How many people just give up and don't get treated?

It's insane. How many people just give up and don't get treated?

I often ask myself that exact question, especially given that not everyone has the resources and the baseline level of information to keep pushing.

Susan, that is so damn frustrating! I'm rage-y on your behalf.

Also, a local friend of mine just posted your husband's Barbieheimer tweet on Facebook and it was a total worlds-colliding moment.

That tweet is making the rounds! I feel sort of present at the creation because he texted it to me and Alex before sending it out to the whole world.

Our healthcare system is such an incredibly frustrating mess. So many people can't manage to navigate it at all.

Sending persistence and coping vibes to askye and Susan.

Mom talked to the hospital. I think my aunt's nurse who said that someone from the hospice did go see my aunt and is baffled about how she could determine that my aunt isn't terminal.

There is another hospice organization that mom called and the case worker is going to work on things as well.

I really wish I could give the horrible lady from last night a piece of my mind. She was just awful. I can't imagine what it would be like for someone who had a closer relationship to their loved one.

The breast clinic called me this morning to offer me an appointment that had opened up due to a cancellation, so I'm now scheduled for this coming Monday at my preferred location. Which is a relief, but I'm also very aware of how much I benefit from the privilege of being an obviously educated middle-aged white lady capable of striking the fine balance of being anxious and persistent enough to arouse sympathy while remaining polite and non-disruptive enough to not drive it away.