Wow. I thought my self-advocate heroics were mostly over after that whole seeking-a-second-opinion-and-finding-a-second-breast-tumor episode back in August. Well, apparently managing post-op care after going through the ER is also a study in self-advocacy.
I felt a little uneasy when I was being discharged and was told to come back Tuesday, Nov. 4 to get my drain out and that it would just be scheduled for me and I would get a message through my patient portal. The message came the evening I was discharged — to come back Tuesday, Nov. 11.
What? But I already had my new chemo date for Friday, Nov. 7 — a carefully chosen date to allow some time to heal from the drain removal before poisoning my body again with chemo that severely inhibits your body’s ability to repair itself. Having my drain taken out on Nov. 11 would be very, very bad. Would I now have to delay chemo for an additional week (I’m supposed to be having chemo today, but that got canceled because of this abscess business).
On Wednesday, I called and talked to two people about how I would like to get my drain out on Nov. 4 as I had been directed at discharge. Circles and circles, and someone finally calls me hours later (at 4:00 p.m. Wednesday) and said they will ask the surgeon and get back to me or have the surgeon get back to me. I should hear something within 24 hours. Honestly, I was the model of grace and patience when I told them I totally understand and I look forward to hearing from them.
But. I. Hear. Nothing.
This morning, I notice the attending surgeon on my case has been added as someone I can message through my patient portal. So around 7:00 a.m., I send a message. By 8:30 a.m., the surgeon’s nurse writes me back saying she sees in my discharge note that yes, I should return on Tuesday, Nov. 4 and she will get with the surgeon to see if we can move my post-op visit to that date (I’ve learned somewhere through all this that they only do post-op visits on Tuesdays for causes that originated in the ER).
My friends at Duke still have not posted my revised chemo schedule (despite talking to my oncologist’s NP earlier this week and she said she will change all my appointments and that my third infusion date is up in the air because she didn’t think the cancer center is open the day after Thanksgiving) … I am actually still scheduled on my Duke patient portal for chemo today! And I’m actually going over to Duke today to do my last post-op visit with my mastectomy surgeon … it had been put off for several weeks to try to coordinate with my chemo visits, but I’m just going to go today and get this done with. I am trying to keep my tentative schedule up-to-date on the righthand column of this blog’s homepage.
Now, a bit more bad-ish news — the kind you are not supposed to worry about until you have to worry. That’s right. Test results!
So my CT scan results were also posted to my patient portal. (They took a CT to diagnose my abscess). Of course, they look at all kinds of things with this and they often have what are called “incidental findings” — meaning they find something unrelated to the problem that the patient is actually in for. Well, they found a 3.3cm mass on my right adrenal gland. And the radiologist wrote in the report that it is recommended for an MRI for further study. No one ever told me about this. I am trying not to worry. I did a little Googling and these things are often benign, but at 3.3cm it may be large enough for intervention. So, in addition to three more rounds of chemotherapy, I also have ahead of me the need to explore this adrenal mass. Oh, and let’s not forget that they said they found 2 fistulas that they simply didn’t treat when they went in to drain the abscess.
Seriously. I think I am more on the tenacious and persevering side than not. How do meek or less tenacious people advocate for themselves in a system like this? I mean, I STILL don’t have my next cancer appointments finalized and I STILL don’t have my next post-op visit finalized, and NO ONE TOLD ME I HAVE AN ADRENAL MASS THAT A RADIOLOGIST RECOMMENDED FOR FOLLOW UP.
And people think I’m crazy for thinking about showing my horse this weekend? Sometimes a girl just needs to walk away from the world for a few minutes and ride her horse and pretend everything is OK.
I am recovering well from the draining of my abscess. I still have a drain