-EXPECT SOME HARSH LANGUAGE-
NATIONAL GBM AWARENESS DAY
July 21 was National GBM Awareness Day. It is an incredibly special day, and I’ve written about it in Prior Posts:
PRIOR POSTS ON NATIONAL GBM AWARENESS DAY
An Avid Brain Cancer Advocate Living With A GBM
In Memory of Our Beloved Jaclyn:
NATIONAL BRAIN TUMOR SOCIETY
This momentous day would not exist without the hard work and dedication of the National Brain Tumor Society. http://www.braintumor.org
All brain cancer is horrible, but GBM is especially terrible. Let’s be clear. No one jumps for joy when they get a brain cancer diagnosis, or any cancer for that matter.
However, I witnessed the look on my dear friend’s face when she learned her astrocytoma had developed into a GBM.
It was indescribable and though I didn’t know it then, but now that she’s been gone for over 3 years (feels like yesterday) I know the devastation the diagnosis can bring.
OUR BROKEN HEALTHCARE SYSTEM AND HOW IT AFFECTS BRAIN CANCER PATIENTS
THE FACTS ABOUT GBM
So, Yes I had to go back into the hospital AGAIN, which is why I did not get my #GBMDAY Post up on the 21st. While I did not have a GBM, I know many who did have it and /or have it.
BACK TO THE HOSPITAL I GO…AGAIN!
The Cost of Brain Cancer Medical Care
Many of the facts provided by NBTS on GBM unfortunately apply to all brain cancer patients, such as the insane cost of our care and how harshly it can impact a patient’s life for years down the road.
Even with great insurance, I pay thousands of dollars a year for my care.
However, without that insurance I’d literally be homeless.
A REAL LIFE EXAMPLE OF THE COST OF MEDICAL CARE DUE TO BRAIN CANCER
Recently, I received a bill that included my stay for inpatient rehab, which was just under $180,00.00, as well as a 3-night stay in the hospital, which was $83,00.00 and then another 4-night stay which was $56,00.00.
Also included was one surgery that required a week-long hospital stay. That cost $219,00.00. Another surgery that only required a one-night stay cost $92,00.00.
AND THAT’s ALL JUST ONE BILL!
Over 7+ years now, I’ve had 9 surgeries, countless hospital stays, diagnostic tests every few months, I take 7 medications daily plus others that are “as needed”, regular blood tests at the hospital labs, physical therapy and occupational therapy. The list goes on and on.
Thankfully, only because I have insurance, I mainly just have to pay my co-pays.
However, those add up too. No, they don’t equal the extreme cost on the bill I described, but still, the point remains the same. THE SYSTEM IS BROKEN!
Who could afford to pay these kind of medical bills without insurance?
Not to mention, insurance doesn’t always cover the care or treatment we as cancer patients need.
AGAIN, THE SYSTEM IS BROKEN!
Most of my family live in Europe. No, their medical system is not perfect. However, at least they do not have to fear bankruptcy or losing their home simply because they got sick.
Importantly, no one asks for cancer. No one deserves cancer. And NO ONE is living “the high life” on government assistance! Christ, you can barely scrape-by on what Social Security Disability pays.
Personally, I worked an extremely challenging job, put-in countless hours of time and effort into law school, passing 2 bars, moving-up to better firm after the other, earning a good living through hard, hard work-all for it to be taken because of brain cancer.
Yet, so many people must continue to work through cancer treatment to keep their medical coverage. That is purely wrong!
A “VACATION” NO ONE WANTS -“SUMMERING” IN THE HOSPITAL
THE EFFECTS OF BRAIN CANCER CONTINUE LONG AFTER TREATMENT
Ya know, in the summer people in my area vacation in the Hamptons, Fire Island, the Shore.
Well, I, dear friends, seem to have adopted the hospital as a second summer home. 😩.
A Compromised Immune System Due to Cancer Treatment: “Cancer, The “Gift That Keeps On Giving”
Of course “summering” in the hospital was not by choice!
No, it’s because I contracted a severe bacterial infection in part because my immune system was so susceptible due to chemotherapy that I stopped back in March! Yes, more than 4 months ago.
Unfortunately, after a very intense seizure I had to go to a local ER. Well, the idiot ER doctor I saw failed to realize my compromised system. He prescribed an antibiotic that I did not even need, which then made me even more susceptible to this infection. I wrote all about it in a recent Post:
SOMETIMES I FIND MYSELF ASKING, “WHERE THE — DID HE/SHE GO TO MEDICAL SCHOOL?
It is frightening for someone with brain cancer to go to a regular, everyday ER. Even at major Cancer Centers it’s difficult enough to determine what causes my problems, never mind a standard ER.
HAVING NO CONTROL OVER WHAT HAPPENS TO YOUR OWN BRAIN AND/BODY IN THE HOSPITAL
There is so much left out of our control as brain cancer patients in terms of our care. It’s just like being a Puppet on a String. THE SYSTEM IS BROKEN!!! And you don’t learn just how broken until you’re sick.
Obviously, our brains are extremely complex. So will I ever understand my disease fully? Not a chance!
Will I ever understand the intricacies of all my 9 surgeries? No way!
Although, I am convinced my tumors were due to genetics, I doubt I’ll ever confirm that in my lifetime.
The Hospital Experience
THE “TEAM”
While I’m in the hospital, what truly irks me is that I don’t even have full knowledge or control about what is discussed amongst the hospital staff who constantly come in and out of my hospital room.
You don’t know their names, titles, level of experience, etc. The exception is typically the lead resident. Anyway, they’re known as “The Team.” 🙄
They’re certainly not the NY Yankees-they’re the Bad News Bears.
However, these are the people who are SUPPOSED to report back to your treating doctor, who then makes the final decision on your care.
Yet, I cannot count how many times these people have made decisions about my care without consulting my doctors-whether it’s my oncologist, my surgeons, my epilepsy doctor, etc.
A Perfect Example of This is What Occurred Just Last Week
I’ve dealt with this bullshit (pardon my language but it is the truth) for over 7 years now. I know so much more about my condition and my body than some “Team” who probably read a sheet of paper about my history.
Yet, they storm into my room at 5:00 am, turn on all the lights and tell me, “Follow my finger with just your eyes”. Then THEY tell ME about my condition because I could follow their finger…
I’ve gotten to the level of frustration that now I simply just start yelling. The reason is mostly because unless I’m yelling NO ONE LISTENS!
IMPORTANT ASIDE: if you’re a resident, listen to the patient. If you’re a first–year resident, especially listen to the patient! IN MY PERSONAL EXPERIENCE, MOST DO NOT (NOT SAYING ALL). Hell, I could say a huge majority of seasoned physicians don’t listen either, but that’s why I choose my doctors carefully.
Also, listen to the nurses!
I know we ALL have to learn and start somewhere. Resident life is no cakewalk, but don’t act superior to me. Especially if you’re a first-year. You’re lowest on the totem pole.
THE “BEST” AND I USE THAT IN THE PEJORATIVE, IS WHAT OCCURRED LAST WEEK:
IS THIS A HOSPITAL OR MAFIA SHAKEDOWN?
So, back to when I was hospitalized for the bacterial infection I caught called, CDiff, for short.
I knew I needed to see Infectious Disease and GI. Yet, Neurology was handling my case because of my brain cancer history.
ABSOLUTELY NO ONE LISTENED TO ME THAT I NEEDED THOSE CONSULTS!
NO, THEY TOLD ME I NEEDED A BRAIN MRI … FOR AN INFECTIOUS DISEASE THAT AFFECTS THE BOWELS, AND DESPITE THE FACT I HAD ONE 3 WEEKS PRIOR!
As is my right, I refused. I was weak, I’d been suffering constant migraines from not being able to eat plus dehydration. You do NOT want a brain MRI with a migraine.
RESIDENTS-THE NEW “GOODFELLAS”
Martin Scorcese’s 1990 Goodfellas is one of my all-time favorite movies. Sure, it has some pretty dark moments, but it’s fantastic.
I don’t know maybe it’s got to do with being raised in New Jersey just outside of NYC, but I can recite almost every line. I’ll watch it over and over. Plus, I gotta love the fact that 2 of the main characters can never be “made guys” because they’ve got irish blood. And I mean, ya have to love the boss sitting in jail, slicing garlic for their Italian feast with a razor blade!
Nothing beats Joe Pesci’s Ma though telling him he needs to find a nice girl and settle down while they’ve got a man stuffed in a car trunk in her driveway.
“F*CK you. Pay Me”
Basically, Being Told “F*ck You. Pay Me” In My Hospital Bed
If you don’t know the movie, one of many iconic lines is crude, Yes. However, they’re Mobsters.
Henry Hill, played by Ray Liotta, is explaining the simple rules of borrowing money from the mob. “Business bad? F*** you, pay me. Oh, you had a fire? F*** you, pay me. Place got hit by lightning, huh? F*** you, pay me.” This one might be the film’s most widely recited line: catchy, expletive and straight to the point.
https://www.independent.co.uk/arts-entertainment/films/news/goodfellas-best-quotes-30-anniversary-ray-liotta-joe-pesci-robert-deniro-b421954.html?amp
IN CLEAR VIOLATION OF MY PATIENT RIGHTS, I WAS TOLD TO AGREE TO THE MRI AND I WOULD GET THE CONSULTS I NEEDED
The short story is that a first-year Resident sauntered into my hospital room, said he was a “consultant” (a title I’ve NEVER HEARD OF in a hospital before) and blatantly told me if I agreed to the brain MRI, I’d get a consult with Infectious Disease and GI.
And Yes, I’m calling-out the hospital that permitted this despicable behavior- Memorial Sloan Kettering!
CALLING OUT THE TRUTH
It’s no secret they’ve spent millions upon millions of dollars on building these new “state of the art” complexes across Manhattan and in New Jersey. However, when COVID hit revenue declined significantly because patients were afraid to undergo anything that was not absolutely necessary.
In fact, one nurse told me they had doctors pushing unnecessary tests to boost revenue. Also, there’s an issue with employee pensions.
Thus, in order for me to get the medical care I needed, I had to agree to undergo an MRI. I knew I didn’t need. And Surprise. Surprise. No changes were seen from the MRI just 3 weeks prior.
“As far back as I can remember I always wanted to be a gangster”
This is yet another iconic quote by Henry Hill, as well as the opening line of the movie.
I sincerely hope our medical system does not begin to follow this path, as COVID continues and people simply just avoid hospitals, or else who knows what patients will be forced to undergo.
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