This blog is all about how I how used humor to remain sane while dealing with the insanity of a brain tumor the size of my wife’s fist. Why blog? To help other folks cope with serious health issues/brain tumors/cancer and give anybody wading through the muck of rehabilitation some hope or at least a chuckle or two. It will include a vaguely chronological story, books reviews, presentations to rehab patients, etc.
some potentially good news from Ryan Cross who wrote about Alexandre
Carpentier (pictured above), a neurosurgeon at the Pitié-Salpêtrière Hospital in Paris, who used
“ultrasound to open the blood-brain barrier in patients with recurrent
glioblastoma, the most common and deadly tumor originating in the adult
brain—allowing for delivery of chemotherapy that would otherwise reach the
tumor in minuscule amounts” - https://www.technologyreview.com/s/601691/ultrasound-opens-the-brain-to-promising-drugs/
background, you should know that the protective sheath surrounding the brain’s
blood supply—known as the blood-brain barrier—is a safeguard against nasty
germs and toxins.But it also prevents existing drugs that could potentially be
used to treat brain cancer or Alzheimer’s disease from reaching the brain.
to Cross, “the procedure works by first injecting microbubbles into the
bloodstream and then using a device implanted near patients’ tumors to send
ultrasonic soundwaves into the brain, exciting the bubbles. The physical
pressure of the bubbles pushing on the cells temporarily opens the blood-brain
barrier, letting an injected drug cross into the brain.”
The Science Daily article provided context noting that “… previous research had established that the slow-growing
tumors are more common among people who are obese and those who have diabetes,
researchers led by The Ohio State University's Judith Schwartzbaum set out to
look for a relationship between meningiomas and blood markers, including
This relationship made sense to me as a non-scientist and a meningioma
survivor: if I lead an unhealthy lifestyle, I could get whacked with a brain
tumor. The unexpected finding seems to have also confused Schwartzbaum who said:
"It's so unexpected. Usually diabetes and high blood sugar raises the risk
of cancer, and it's the opposite here."
And she should know, Schwartzbaum is an associate professor of epidemiology
and a researcher in Ohio State's Comprehensive Cancer Center.
This confusion or unexpected
result has dampened my sense of
control, or at least my hope that I can improve my odds of avoiding a
meningioma reoccurrence by doing what I thought made sense – staying thin. Now
another weapon/practice/solution has been deleted from my arsenal.
will find great brain tumor surgeons, researchers, victims, caregivers, and
friends and family members. I’ve found everybody who attends to be good
listeners and full of honest advice and time to listen to you and your concerns.
opening sentence of the email from the ABTA about the conference says “The
ABTA’s annual Patient and Family Conference is where patients, families and
caregivers come together to learn more about the latest advances in brain tumor
research, treatment and care.” I want to highlight two important words “latest
you haven’t been reading all the brain tumor news that’s been spilling out of
research studies of late, here’s a good place to get a sense of all the new
tools we have to fight brain tumors. The ABTA marketing folks have highlighted
that in their first two bullet points saying:
will present the latest precision medicine treatment options and symptom
management techniques for low-grade glioma, high-grade glioma and metastatic
and doctors will highlight treatment advances in neurosurgery, radiation and
the conference includes “A special session for the newly diagnosed will cover
how to navigate the early days of a brain tumor diagnosis and what information
patients, families and caregivers would need to know in order to be empowered
with information and resources to make informed decisions throughout their
treatment and care.”
know that the conference costs $100. If you are a victim, caregiver or love
one, I believe that you will find this to be a particularly good investment.
I heard some good advice
from a guy whose wife’s best friend was diagnosed with glioblastoma, Grade 4,
it was something like “enjoy every day.”
I had a hard time with that
advice for a while – how could they enjoy life knowing that she had
this horrible disease eating away at her, inexorably dragging her into the grave?
I now think differently
about this advice. I don’t believe the advice is trite or Pollyanna-ish or
divorced from reality. I think its sound advice that reminds us all to cherish
what health and family we have while they are with us.
I know of no other story
that tugs on my emotional heart strings as hard as stories about children with cancer,
like many of the Ependymoma stories you’ll find on the CERN website.
I’ve attached a link to one such story that brings this idea to life - a story about little four-year-old “Sophia L.” with Intramedullary
Ependymoma. You can read about her and her mother here:https://cern-foundation.org/?page_id=6411