I haven’t wanted to write in a very long time. This year has been, bar none, the most challenging of all. I’m living through it and taking the opportunity to try out all I’ve taught while in the harshest of circumstances. While I don’t always feel strong, I am strong. And so it goes.
My mom recently went into hospice care, care that focuses on comfort and quality of life not dying or living longer. It’s been a very long and startling road. For the second time in my life, I’ve pushed the limits of what I’m capable of and had destiny answer with a sort of “Thank you, but this story is already written.” I’ll explain.
My mom has brain cancer of a type that 98% of the time kills its host within 24 months. It’s terminal and incurable. Now, you know what I think of “impossible” problems, right? No such thing. So, I set out with that intention and immersed myself in neuro-oncology. I became versed in tumor pathologies and genetic mutations. I studied eastern and western approaches, met survivors, and explored experimental medicine. I helped my mom eliminate sugar, juice, take supplements, get reiki, radiation, acupuncture, cannabis oil, chemo, homeopathy and a nutritionist. She saw the best doctors in the world, and when the tumor grew through all of this, they said there was nothing more they could do. I wasn’t willing to accept that. So, I kept searching for something to cure or at least extend her life. I found a clinical trial that used her own immune cells and trained them to attack the tumor. After 3 denials, the trial leader agreed to treat my mom.
This trial had the potential to cure the tumor, and my mom was only the 3rd person in the world to receive it. It was such an incredible opportunity. It had no toxicity or damage risk like other treatments.
In November, 90% of the tumor was removed and her cells were injected weekly to deal with the remaining 10%. Everyone was optimistic.
By January, she began to decline. She’d lose her balance, have inaccurate memories, and was unable to keep her calendar. A scan showed an area of swelling that was of an undetermined cause. It could have been a temporary effect of treatment, but the tumor looked well controlled.
By February, my mom needed a high level of assistance and care. She was unable to care for own needs. We moved her to Seattle to a small, high-care, adult family home (good words to know, only 5 patients, steady staff, a house not hospital, trees, beauty, comfort). It’s 3 minutes from her sister’s house, 15 minutes from another sister, and we have about 15 family members in the area who see her several times a week.
In March, the oncologist said treating her would be futile. She’d lost control of her body and her ability to think clearly. He recommended hospice care. It took a couple of weeks for my family to agree it was time to give up treatment hopes.
Last week, I went to Seattle and set up hospice care. It was painful, but I took solace in knowing that I’ve done all I could. But, in my most private moments, I questioned my often termed “out-there” unlimited thinking. Reality was clearly telling me to get back in the box and to accept what I’m told, something I’ve never been very good at doing. What else could I do?
When I returned home, I received the most bittersweet email. The clinical trial doctor reviewed my mother’s latest MRIs. They showed the tumor he treated has not grown a millimeter. The thing that’s killing her is another tumor that’s growing in an untreated area. He went on to say that if my mother were fit enough for treatment, he had saved enough of her cells to treat that tumor too.
She is not fit for treatment. She has no hope of qualifying for the trial, or even living through the barrage of trips and tests that precede it.
The trial succeeded. The tumor was controlled. The impossible to beat cancer was beaten, and other cancer like it would probably be beaten too. We did it.
And that’s not her soul’s path.