(Edit: this got lost in the draft pile somehow, so there’s two posts today.)
I’ve been absent for a couple of weeks. Sorry. Between appointments, and bills, and Drumpf’s bullshit, I’ve been in a bit of a funk.
Last week had the most drama. It started with a CT scan and Bone Scan in the same day. The appointment started with a 30 minute argument with, progressively, the Nurse, the Head Nurse, and the Radiologist. The problem, like so many of the problems I’ve had in my career, was terminology.
A very long time ago, I read a small article that said some large portion of adult acne was caused by overuse of iodized salt. As a frequent sufferer of adult acne, I changed from iodized to non-iodized salt, and solved 75% of my problem. I mentioned this “intolerance” to my doctor, wanting to have my records thorough. Well, turns out they have no little checkbox for intolerance, just for allergic and non-allergic. So they marked it down as allergic. And thus the 30 minute heated argument.
When I showed up, they wanted to give me a Benedryl drip for two hours, prior to the tests, to guard against my “allergy”. It took me 30 minutes of heated argument, with 2 different nurses and a radiologist, to get them to let go of that, and even then it was only after agreeing to let the nurse stay in the room while the contrast dye was injected, to ensure that I didn’t have any reaction.
Then there was the argument over where to insert the IV for the contrast dye. I had a double mastectomy, and had 2 sentinel nodes removed. Just 2. I’ve read of women who’ve had upwards of 1-2 dozen nodes removed. And in those cases, yes, there is a high risk of lymphedema in the affected arm. And while there is an easily accessible vein on the affected, left, arm, it’s hell finding one on the right arm. I tried my best to argue that 2 lymph nodes removed is not the same risk as 12-24 nodes removed. Having given in on the 1st argument, they were having none of it for the 2nd argument. However I insisted they not go in the back of the hand, which hurts like hell. So they went in the vein on the side of the base of the thumb. I have a new place to refuse IVs now. I could NOT find a position in which it didn’t hurt.
Anyway. After the tests, I talked to my Nurse Navigator about the argument, and begged her to get the “iodine allergy” removed from my records.
At the test results review with my Oncologist, the first thing that the Nurse Navigator said was that she had gotten it removed! Yay! Second, my Oncologist said my test results were crystal clear! It could not have gone any better.
With all the SHITE that’s coming out of the White House (I refuse to use his name), it’s been an almost overwhelming week. For the first time, I called my Senator, both of them, and gave my opinion on what I wanted to see happen. I called entire committees to voice my opinions on how they should vote and what they should do about all of the confirmations. I hate phones. I grew up overseas, with no phone. I prefer email or texts to phone calls. And I spent about 2 hours on the phone last week. I spent at least 30 minutes making calls this morning. I expect to spend at least that long again, on at least 2 days this week. I have a residual limp and I can’t stand in one place too long, so I didn’t feel like I could join the protests and marches. I still have co-pays and deductibles and co-insurances to pay for THIS year, not to mention I don’t know what the hell’s going to happen with the insurance turn-over that’s planned at my husband’s workplace. I may well have to pay all those type of fees again when I start chemo in March. So I haven’t felt comfortable donating to all the causes that I’d LIKE to, at least not now. But I CAN put on my big girl panties, suck it up, and make calls. So I have. I’m trying to feel ok with just doing that right now. Wish I could say that I feel ok with it. I don’t. I wish I could feel ok with what’s coming out of the White House. I don’t. I don’t think I ever will.