Frustrated
“How important is it?”
This is one of the questions I’ve learned over my life that is worth asking. Many times I would have written a letter and ventured off into phone calls and wasted precious time setting them straight and taken my time and energy away from what Dave and I were dealing with. It went against my nature to let those things go and just find a way to move on or workarounds. In the end, it was the right thing and I attribute it to age-related Wisdom! haha
When in Stockton, at our son’s house, sleeping on the couch while trying to manage Dave’s catastrophic healthcare crisis, I sent two messages over the holiday weekend thru the online system many healthcare providers now use. One to our local oncologist who sees Dave post appointments from Little Rock and puts everything we need in for his treatment and so on. And one to our UAMS doctor. It was a quick, succinct SOS message, complete with both of our phone numbers.
Of course, Dr. VanRhee called with his APN’s listening in first thing Tuesday morning. It was the perfect call as we discussed what happened and what was needed and whether there were any other options to get Dave collected on the 13th.
From our local, he simply sent a response, some time, and it made me really angry. Then frustrated. Then resigned. When this happens sometimes I just sit on it for a while before I decide if I will respond at all or if I do how I will address it.
So here was my response this morning. It was direct, but hopefully, moved on.
Dear Dr. K,
I have to tell you how very disappointed I am in your email response, vs a phone call, with Dave’s Femur Fracture. We were in a town we don’t live in, and he was at a hospital I don’t know, with doctors I’ve never met, and they had covid exclusion rules in effect and I couldn’t even get into the building. I sure could have used your help or even support.
To have you simply say, “It looks like his myeloma is back” was well, obviously. And it hasn’t been away in the last few years. Stopping treatment to get enough T Cells was the right call. Having Bristol Meyers cancel ALL August collections became problematic.
9/4 Femur fracture, Stockton, CA, standing.
9/6 surgery
9/8 discharged
9/11 two flights to Arkansas
9/13 Scheduled Abecma T Cell collection
So against all odds, we made it and will be staying while we wait. And yes I’m well aware of the wait time with this new therapy. Dave is back into treatment to quiet the myeloma and will begin PT soon. Lori
And my mentioning that I’m well aware of the wait time, was a pre-emptive strike as he seems to like to throw things at us like that in an office visit, to show he’s got the 411 and is sure we are “unaware.” So yeah, it was kind of dig.
Well, I feel better. And I’m hoping when this Car-T is done, Dave will be insanely healthy and free of visits with our local for as long as it allows, God willing, for a really long time!
“The single biggest problem in communication
is the illusion it has taken place.”
– George Bernard Shaw
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