Spoiler Alert!

Part 7: CHECKING "INSIDE-MY-HEAD"

Still haven’t had my tealeaves or tarot cards read lately, but - this/my saga continues…

Over the course of the last six weeks, in preparation for my ‘date’ with CAR-T, I have been tested for almost everything known to medicine except perhaps pregnancy, prostate and some tropical diseases. My last important test was an MRI of my brain to establish a baseline of my brain prior to CAR-T in case I’m affected cognitively. [Hmmm, no worry there???]

An MRI machine is used to create images of the brain using a magnetic field and radio waves. This test is also known as a brain MRI or a cranial MRI. The machine is a large, cylindrical (tube-shape) that creates a strong magnetic field around the patient and sends pulses of radio waves from a scanner. The magnetic field temporarily realigns water molecules in the body, and radio waves cause these aligned atoms to produce faint signals, which are used to create cross-sectional MRI images. An MRI scan is different from a CT scan or an X-ray in that it doesn’t use radiation to produce images.

The image above is not from my test, but typical of what a neurologist will see. Images are taken in two parts. First, without contrast dye then a second pass with contrast dye.

For those who bravely continue to read about my “sensational-journey’ with incurable, but manageable—Multiple Myeloma [aka bone marrow cancer] I’ve had comments from some who don’t quite understand my relaxed attitude about my condition.

In explanation, I might be less calm about MM if my initial diagnosis had come when I was significantly younger, with young children, but I was lucky [relatively speaking]. When I was diagnosed in 2011 my children were grown, and I had grandchildren as well - also - it was determined that my form of Multiple Myeloma was not particularly aggressive, therefore responsive to the management treatments available at the time. As well, it helped too that between the six separate treatments, over the course of the last 10 years, I felt fine. In addition, if ignorance can be bliss, then I was in Shangri-la because, I had absolutely no idea of how sick I could get if/when treatment options ceased to be available—that did happen 18 months ago when Darzalex stopped working…

During a rather sober doctor’s appointment [May, 2023] Dr. Fonseca explained my one remaining option was a CAR-T treatment. The ‘harvesting’ of a patient’s own DNA carrying immune T-cells then reprograming them to recognize those Multiple Myeloma invaders. Since I had already rejected a bone marrow transplant in early 2014, due to poor outcomes for MM patients—the journalist in me dived into research. What made CAR-T a better option? What I found 18 months ago wasn’t encouraging. CAR-T for Multiple Myeloma wasn’t a one-and-done like it was for many lymphomas or leukemias. But with my condition at that time, enduring CAR-T treatment gave me about 20 to 30 months, but also risked other nasty side-effects. Since doing nothing also gave me about 20 to 30 months, I opted for doing nothing.

By August, 2024 a great deal had changed. As more patients went through treatment, oncologists learned even more about how to best-use CAR-T. With those changes, not just survival rates went from 40+% to 70+%, but many side effects were either eliminated or reduced. Now, survival time could optimistically be projected out as far as an additional five years.

SO—here I am writing much of this primarily for those who may be and/or are going through serious medical issues—terrified.

Why don’t I seem alarmed? Good question. Is it Faith? Am I in deep denial, delusional or only possess the awareness level of a Brazilian Tree Frog…

Not entirely sure myself why I continue to face my health issue so philosophically, but here I am [perhaps] so that others might not feel so alone facing a medical-machine that can be overwhelming.

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!