Spoiler Alert!
Part 8: DAY 30 AND COUNTING...
After juggling everyday life with Multiple Myeloma for the last 12 years my revised juggle is now in groups of 30-day blocks…
It’s been a while, like a month actually since Post7 - so here’s where I left off… I go in next week to have my infusion pick line inserted one day prior to three days of low dose chemo—then Fellow Travelers, two days’ rest. After the rest I will have a one-day infusion of my new superhero-cells followed by hourly monitoring for three successive days. AND we all know how much rest and relaxation one can get in a hospital - right!
Oh, my - little did I know…
It’s not that doctors, nurses or any seasoned medical expert aren’t candid - it’s just that they may describe certain procedures in a way that ‘glosses’ over some prickly details that might cause a patient to rethink medical-assistance. With Spoiler Alert my intention was/is to fill in a few of those details, not to scare anyone, but to share my experience removed from any ‘informative’ video’s, slick colorful brochures or the discussions with so many ‘team’ members with folders and binders of handouts that leave most patients quite disoriented.
Okay - here I/we go. Remember, this was my experience and just like the difference in fingerprints what and how I reacted may be greater or lesser than your experience.
October 4, 2024: my harvested T-Cells were sent Fed-Ex Cold Pak to Jensen Labs in San Diego for reprograming. Since my background is geology and journalism [that morphed to mystery-suspense novels] ‘how’ any life form barely visible with an electron microscope can be reprogramed - ranks right up there with pure magic. So, to the biochemist who reprogramed my T-Cells to recognize then eliminate offending myeloma cells [like PacMan] thank you for doing what you do…
November 12, 2024: at a consultation with Dr. Fonseca my husband and I learned my reprogramed cells had returned the previous Friday—then like the speed and coordination of an arriving travelling circus - the Mayo CAR-T Machine was launched [and me] with more efficiency than StarLink. There were consultations with a social worker and a CAR-T team coordinator and because this treatment is a l-o-n-g term commitment, help with arranging accommodation [l-o-n-g term] was also important.
Mayo Clinic Village—Healing Home…The Mayo Clinic [Arizona] set aside land for cottages that were built to house patients and their CareGiver at a nominal daily fee of $51.00. Each cottage [Casita] has large kitchens with double everything, comfortable furniture and the added bonus of being with other patients and CareGivers living through a similar [medical] experience.
November 14: remember this charming gadget [a triple line port/catheter]? Well, I got a second one only this time it was not located on my neck but attached [somehow] to my upper chest just below my collar bone. Was this new location any less intrusive—no, but its purpose was to allow quick and easy blood draws for the medical team plus low dose chemo and other medications.
November 15 & 16 & 17: via this handy-dandy port my first two days of low dose chemo with an antinausea medication was uneventful. Other than five hours each day of trying to find something—anything worth watching on TV. However, part way through my third day TV programing could have offered every Academy Award movie known to man and I would not have cared. Also, for round 3 the antinausea medication was stronger. This made me SO sleepy I felt heavily weighted down and keeping my eyelids open was only possible going a short distance to the toilet.
November 18 & 19: these days according to the Mayo schedule were rest days, but the antinausea medication made certain I couldn’t do anything except rest… By the afternoon on the 19, my husband and I were called that my room in the hospital was ready, and I was admitted. More equipment was attached to me via 8 [very] sticky sensors on my chest, sides and upper abdomen, to which clips with wires attached to a box [that weighed a pound] I called the ‘brick’ - monitored heartrate and blood pressure. On the middle finger [got’ta luv irony] of my left hand was an oxygen sensor. And my hospital attire was a gown designed to fit LeBron James. I’m 5’2” and yes. the one-size-fits all outfit tied in the back with shoulder snaps that rarely fastened properly.
November 20, 2024—Day 0—those super T-Cells I had waited to ‘meet’ since October 4th were returned. I was in a single room. A bio-tech specialist came into my room carrying a small camp cooler then proceeded to take out something small and thin [less than a package of cigarettes] and finish ‘warming’ up the cells with her hands. Also in my room was my husband, two RNs in training, a nurse at the computer monitoring everything attached to me with a second nurse gauging the flow of my new T-Cells from an IV attached to - yup - one of those three ports. The entire process was 20 minutes. I was lucky, I didn’t have a reaction, so the nurses didn’t need to stop then restart my infusion.
And just like that - my new T-Cells were back…
DAY-1—November 21… My first night as [expected] I got little sleep, and it became the pattern of my entire hospital stay. Every 3 to 4 hours [24/7] someone was in my room checking. Understandable that monitoring is/was big-huge-important however, from [my] the patient’s perspective healing-rest should be factored. Since cognitive monitoring [counting backwards from 100, spelling l-u-n-c-h backwards, the date, where I was etc.] was also valuable, I would have thought that waking someone up 4AM and asking those questions would be difficult for any neurologist. But that’s just me.
DAY-2 to 6—November 22, to 26… Except for knowing I was quite sleep-deprived my days held little in the way of excitement except for the Mayo hospital showers! Undressed with all the equipment attached to me I resembled a first-year engineering project. Now, one would have thought that with this amazing medical breakthrough - how to keep the triple-line port dry would have been considered as well. What was Mayo’s solution? GLAD Press n’Seal…! No joke. You’re not reading a misprint. For those who may not know, this product is quite sticky on one side and clings to human skin was amazing efficiency. Every day I wrapped my upper chest like a sandwich so I could shower.
Let me also add here for those who may not have had much in the way of hospital stay experience… Forget modesty and pride that does not exist. I actually learned that decades ago with my first pregnancy. As the months went by then delivery day arrived so many people, I had not been formally introduced to saw parts of me I couldn’t without a mirror on the floor… So, I was prepared. At the Mayo showering and going to the toilet were meticulously charted. Everything I drank was measured then everything that left via my bladder was measured. [Just so you know.]
DAY - 7—November 27… Since fevers were/are one of the side effects they can suddenly not only appear but spike swiftly. My temperature was taken every 3 [sometimes 2] hours each day, but a little less at night. However, I was doing so well that factoring I was staying on site in one of the Mayo Village cottages [5 minutes away] the doctor felt I could be conditionally discharged. What a relief. In the room my husband and I shared I ‘napped’ for 10 hours!
DAY - 8—November 28…Thanksgiving Day. We had a lovely meal at the Mayo cafeteria with about 300 other patients, CareGivers and medical staff. Then—my husband as CareGiver became quite serious about his monitoring role. He morphed into the temperature-police. I went from about 10PM that night at a steady 97.6 to 98.2 then 99.4 by midnight We went to bed. However, at 2AM Hubby was back on duty and woke me up. Good thing, because my temperature read 102.2. In robe and pajamas [that fit] off we went to Mayo’s Emergency ward
Day - 9 to 11 November 29 to 31. Because I had begun a fever cycle, I was readmitted. Ugh… I fevered for 16 hours then nothing for another 28 hours. Relatively speaking my fever cycle had been quite benign. Again, I felt lucky and luckier still when I was once again discharged to the cottages.
DAY - 12 to 27 December 1 to 17. Twice weekly I went for blood draws, that showed slow, but steady progress. The cognitive test also continued, but with regular sleep I aced those. December 12 was a banner day - I had my triple line port removed. I no longer felt like a Bionic Herman Munster.
As I write this, I have reached DAY 30 which is a significant milestone. Every 30 Days [Nov 20 to Dec 20] from Jan 20 to Feb 20 then March 20 will be another benchmark that hopefully comes and goes with no complicating surprises. The last important round of testing [likely June 2025] will determine how effective the CARVITKY CAR-T CELL Treatment has been long term. Am I merely in a form of remission or has Multiple Myeloma been eradicated from my bone marrow completely…