The photo above is “y” I haven’t updated the blog, I apologize for the lapse.
Since I arrived here at Brigham and Women’s (Dana Farber’s inpatient hospital) I have been asked what every nurse and doctor calls “those silly questions”:
Where are you? Brigham and Women’s
Which city? Boston
Some version of what’s the date? February 2021 (at least)
Can you name 3 simple objects in the room they point to? Flashlight, refrigerator, pen
Can you count backward by 10’s from 100 to 0? 100, 90, 80, 70, 60, 50, 40, 30, 20, 10, 0.
Some doctors ask can you name the days of the week backwards starting with today? Tuesday, Monday, Sunday, Saturday, Friday, Thursday, Wednesday
And the last one is to write a simple sentence. Seems weird but for the most part thinking of what to write was the hardest part. In one midnight testing I wrote: “The rain in Spain stays mainly on the plain.” I laid back down and couldn’t even remember where that came from, then of course, My Fair Lady, Eliza Doolittle – random!
But on Thursday (day +9) I did get a fever and they could see the indicators in my blood that there were a lot of cells were dying. I was finally getting the response to the CAR-T cells I had been hoping for. Both Friday and Saturday were rough days. Below are sentences from Saturday.
For several days I was in and out, coming and going with the fevers. I totally “lost” at lease one day, maybe two. Examples of what it was like:
- I could not figure out how to make a call with my iPhone
- And I wanted it on speaker, also a no go
- If you did get a call from me there was a day I could only get about 3 words out
- Texting was very difficult, and I chose not to for several days, that took the longest to come back
- Difficulty getting out of bed
- No appetite
- Napping most of the day
It was just yesterday morning that I quickly sat up on the side of the bed and felt almost totally like myself.
This was all part of the CRS (cytokine release syndrome). CRS is also seen in COVID patients.
I also had TLS (tumor lysis syndrome), this was less something that I felt, but was carefully controlled by the team here. TLS can damage your organs, including the kidneys, heart, and liver.
The really good news, as they kept telling me, was as badly I was feeling my myeloma was getting it worse. They were very impressed by the response, saying they hadn’t seen such a great response. It will be several weeks before I come back for scans, etc.
And yes, I said “come back” – it looks like I will really be going home on Thursday. Today they finally stopped the extra fluid, and other meds, and as of tonight my numbers look great on their own.
I will update if that changes, and plan to update more as I can now.
I hope you can laugh along with me at my neuro toxicity “writings”. When I first laid eyes on it I laughed and laughed.
There must be some others in a trash bin somewhere, perhaps I’ll ask if they save them as part of my record.
Again, this team here both nursing, rounding PAs, PCAs, and the amazing brains on the CAR-T team (including my Mr. Munshi, but many others).