(From our backyard. Believe it or not, it feels like spring)
Yesterday was my first neurosurgery consultation. We scrolled through my MRI on a 21 inch HP screen and I saw exactly where the cancer is. Medical imagery is fascinating. Data scientists see the vague patterns that will help shape the future of care. Doctors see data, structures, hypotheses, a world. Good doctors (like mine) explain these things to you.
I step back and see outlines, splotches, leaving an impression of shapes and sculptures inside bodies. We're so used to seeing ourselves captured on flat screens, paper, 2D. We are actually 3D, and somehow it behooves us to remember.
Thern I flash back to the 90s ultrasounds of the two babies I carried. And now the flesh and blood and the faces of the two adult sons I deeply love.
Next steps
There's good news and there’s bad news. First the bad news. The growth is not operable. Removing the tumor = high risk of paralysis. Also, you only gain about 2 months with removal.
So the good news is they caught it small. Chemo and radiation will have a fighting chance, provided the tumor has one of the OK genetic mutations.
I'm also relieved not to have major surgery coming up. No more random thoughts about site surgical infection, invention prevention in nosocomial settings. Or a nice little hole in my head.
In a week's time, I'll be admitted for a biopsy. The surgeon will spend 30 minutes getting a core sample of cancer cells. The cells will be sent to a pathology lab, where they'll check on genetics and typing. This testing will tell the care team a few things they need to know.
For instance:
Molecular features. Certain genetic mutations found in the tumor may help determine prognosis. These include: IDH1, IDH2, MGMT, and a 1p/19q co-deletion. Sometimes, whether a tumor has any of these mutations determines the type of brain tumor that is diagnosed.
Source: https://www.cancer.net/cancer-types/brain-tumor/grades-and-prognostic-factors
More info if you're geeky like me:
https://atm.amegroups.com/article/view/6698/html
After the biopsy, I'll start chemo and radiation simultaneously. The chemo will be oral, so I won't have to deal with ports, catheters, or IVs.
How long have I got?
I don't know. The docs don't know. The median is 12-18 months, but people aren't statistics. Tomorrow I might be in a car accident on the way to the grocery store, or I might set a record in the annals of glioblastoma and live another 30 years.
One step at a time is my mantra and preserving function and quality of life is my goal. That is a bloodless way of saying that I will spend my time feeling and savoring every moment good and bad, focusing on my husband and two sons and the people I love. i will pursue novel treatments if I'm a good candidate. I will expect good care.
One thing I know deep down. My journey ahead is rich.
Oh Sota!! You are so composed. I hear your voice as i read your updates for us. Love you
Chère Sovita. Bon courage. I wouldn't call the "bad news", bad news, especially if the surgery does not buy you much, prognosis wise, but with lots of downsides. Sometimes, no choice is (much) better than agonizing over "close calls".
They do miracles with "designer chemotherapy", which targets specific types of cells/mutations. We will look back at this countless years from now, and you we will reminisce about the time "you showed us what you are made of". Pure gold--and tough as nails :-).