LAST WEEK I GOT THE CALL NO ONE EVER WANTS FROM THEIR DOCTOR: “WE’RE RUNNING OUT OF OPTIONS”
I THOUGHT 9 WAS MY UNLUCKY NUMBER-SEEMS LIKE IT IS ACTUALLY 4
Now that I have officially been diagnosed for the 4th time with a severely aggressive and extremely rare brain cancer.
Not JUST that, but it’s been the 4th time since only April 2014! It struck when I was just 34 years old.
Additionally it’s the 2nd time it has spread to the lymph nodes in my neck in just one-year. However, I underwent a 14.5 hour surgery only a year ago to remove multiple lymph nodes and one of my major salivary glands, the parotid gland.
That’s a lot of Fours!
After that extremely traumatic surgery I stopped breathing. I believe I left this world briefly and had a NEAR DEATH EXPERIENCE (NED) it was very difficult to write about that experience in this prior Post:
I NEVER LEARNED TO BE A “GOOD CANCER PATIENT”
I NEVER ACCEPTED WHAT IS KNOWN AS THE “NEW NORMAL”
PRIOR POST RE: “THE NEW NORMAL”
Having cancer is basically like dying,even if you survive!
Yes, you’re alive but You grieve the prior “you” before this wretched disease invaded your body! And your own body literally attacked itself, as well as the person you once were.
I never accepted that the disease would win even though the odds were completely stacked against me.
Yet, I kept beating the odds.
I was never a gambler. In fact, I hate, No, I despise, casinos!Sorry,to those who enjoy them.
I HAD THE MENTALITY WORSE THAN A BAD GAMBLER
Personally, I feel like casinos are where addicts throw away their retirement savings; their kids’ college funds, all under gaudy bright lights, and the never-ending chain smoking of alcoholics.
Basically, they’re where dreams go to die. Frankly, I’d much rather have $500 in my pocket than in the hands of some coked-up freak who just beat me in poker.,
In fact, I don’t even know how to play poker!
Despite, my disgust for gambling and casinos, I thought I’d actually be “the one to win and hit it big. I’d “beat the house” known as brain cancer.
I got sucked into the “dream” like a bad gambler!
I kept believing and believing, like that middle-aged guy at 4:00am sitting by himself going-in on “just one more hand” with money that was meant to pay the mortgage on his family’s home!
His cell phone keeps buzzing, but he never once even looks at the number. He knows who it is … his wife, wondering where the hell he’d been all day and night.
CANCER IS THE HOUSE IN THE CASINO OF MY LIFE. AND THE HOUSE ALWAYS WINS!
“HEY, YOU NEVER KNOW”
Sure, miracles happen and people do win huge pots of money. They sit down at a random slot machine and hit the jackpot.
Also, as the motto for the New Jersey lottery goes, “Hey, YouNever Know.” Maybe, a construction worker on break walks into a bodega and decides to buy his first ever lottery ticket and winds up a millionaire.
WELL FOR ME AT LEAST, WE PRETTY MUCH KNOW–DESPITE HAVING THE BEST OF OF BEST DOCTORS WORKING TOGETHER COLLABORATING FROM VARIOUS CANCER CENTERS, THERE’S LITTLE TO NO CHANCE I’LL MAKE IT. THE CANCER WON.
MY BODY FOUGHT EVERY SINGLE DAY FOR ALMOST 8 YEARS. BUT NOW I’M IN TOO MUCH PAIN AND I’M TOO WEAK TO SUSTAIN MUCH MORE.
Almost every part of me hurts. I can’t walk more than 2 steps on my own. I’m confusing simple things that previously I’d never ever confuse.
Though I hate them, I’m reliant on pain killers. Everything irritates my body – the slightest touch, the slightest movement of my neck and back. Simple sounds irritate my head causing intense painful migraines.
My oncologist called me from Germany today. She’s away due to a family emergency of some kind. We briefly discussed the fact that I simply cannot handle any harsh chemo “treatment” She’s expressed that to my other doctors.
So, if she’s taking time to call me from Germany and continuing to discuss my issues with other experts, I’m not “throwing-in the towel” just yet. If she’s not giving-up , I owe it to her and all my other incredible doctors to keep going.
I do believe in miracles and perhaps there’s an immunotherapy or trial option out there. Yet, I won’t know until all the panel of experts meet and discuss my case, in the next week or so. However, the reality is that my life cannot go on like this for much longer in the state it is in.
Dear Ruthie, I feel your anxiousness deeply. Yours is a tough journey, made all the more challenging by the treatments you endure in the hope they will keep the cancer at bay. You are much in my thoughts and prayers.
Last year I wrote about Holding onto Hope, triggered by the moment my neurologist told me. ‘This is the end of the line; your body can take no more. You now need to focus on keeping as well as you can, and getting the support you will need.’
https://www.independentliving.co.uk/philip-anderson/holding-onto-hope
I have grappled with Hope fighting Hopelessness ever since. But I am a hope miner and, except in my darker moments, Hope prevails when I focus on all the blessings in my life. My most recent piece ‘How lucky are you?’ includes two short poems
‘Bad Luck’ and ‘Good Fortune’, looking at my situation from either end of an optimism spectrum.
As you said in your kind comments under this article ‘I too have many blessings and also am determined to live life as fully as possible’.
My prayer is you (and your husband) keep those thoughts deep within you, and feel bolstered by the love in your life 🙏❤️
Philip, you may be the strongest person I’ve never met face to face! Honestly, I was insulted when per hospital policy they sent palliative care to my hospital room. They didn’t know me! They didn’t know my strength and will to live! Now, I’m just in such physical pain and emotional pain that I can’t imagine going through this for much longer.
I don’t regret my constant positivity and attempts to make or help others see the”silver linings but I really never thought I’d face such pain. 9 brain surgeries seems like a “cake walk” in hindsight I pray the pain will be gone on the other side. I felt like I had so much more to accomplish in this life. Sending prayers and hugs from across the pond!
You are very kind, Ruthie. I don’t feel particularly strong!
I am sorry you are in so much physical and emotional pain. Is it not possible for the medical team to help alleviate the pain? Then, perhaps, the emotional pain will be easier to manage
I have no doubt the pain will be gone on the other side, but there is too much life to be lived before then! 🙏🤗
Pain Management is the next team getting involved actually