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Husband Brings Home Unwanted Guest, Erika Schapiro 6/8/23

Brain tumor, Glioblastoma, seizures, malignancy, median survival rate, bankruptcy, fear, hysteria, neurologist, neuro oncologist, brain surgeon, radiation, functional mapping, preventative treatment, prescription after prescription after prescription filled, payment due, labs due, contrast, no contrast, test results, terminal, staggering odds, death rate, last wishes, wills, power of attorney, organ donation, disability, depression, sadness, sickness, worry… endless worry. Hope… always hope too. One day everything just changed.

It’s been quite difficult finding the right words to say to anyone.

I struggle to just speak to people in general sometimes. It seems impossible to make anyone understand. On the rare occasion I do laugh and converse like a normal person, the behavior is compulsory and necessary, generated by some task or responsibility I can’t avoid or a social politeness entrenched in a rote response. These conversations generally lack any meaning on my part. It’s just a facade, hiding a deeply rooted, torrid cluster of emotions and fears, as twisted as a neglected box of misfit Christmas lights alone in a dusty attic, impossible to separate, daunting to even attempt to. Rather than try to even make sense of this mess, I’m simply just trying not to vomit or awkwardly burst into tears. I’m doing a mediocre job as of now, but I am trying. It’s weird to people if you just burst into tears when asked, “debit or credit?” I’m just too tangled up with this unwanted guest. Too tangled to give so many loved ones and cherished friends and well wishers the attention they each deserve. Forgive me for that. All of this nonsensical thinking is exhausting. The feelings all of the time, the emotions, the anger, the worry, the second guessing, the self inflicted thinking is torture. I’m good at that. My life long practice of deep repression isn't working this time. I apologize for that too. Please don’t take it personally, life has completely changed since the arrival of the offensive, life altering, rude, unwanted guest. 

And I apologize for even droning on about my inner thoughts and feelings… or for feeling anything at all for that matter, because I’m not the one with cancer. I’m not the one who is taking all of the pills and the chemo poison and radiation and the one who has bravely had the lumbar taps, and whose head has been cut open… twice. I don’t actually have to feel or host this stupid unwanted guest. That’s the job of my husband and partner of more than thirty years. It’s been his unfortunate burden to entertain this horrid, ill mannered intruder, shockingly and incomprehensibly arriving ill timed and uninvited. 

Adam has the real struggle, the actual physical displeasure, pain, and mind fuckery of this horrible Glioblastoma in his brain, of all places. They are shackled together, fucking with one another day after day. One getting an edge one day, the other rebutting with equal tenacity another. Adam, after all, is quite the formidable foe.

 And so he drags Glioblastoma along with him on his travels. He does it with grace and dignity and strength and personality… so much personality. (I don’t do any of that.) And it’s status quo, Adam is as Adam does, even giving the unwanted brain tumor a friendly name. (I have a different name for it.) The manic exuberance, the positive, surviving spirit, the strong physical gifts, are all intact post op, as anyone who has ever witnessed his athletic prowess can imagine. His diatribes and probing quests for meaning have been as cutting, heavy, and as unapologetic as ever. Anyone who has had the pleasure(?) to be entranced with or held hostage by in some cases, his passionate voice, thoughtful opinions, broad philosophies, deep intellectual curiosities, and his big mouth to express it all… will be happy to know it’s all still there, perhaps even made louder. It’s truly remarkable given he’s missing a nice portion of his brain. Apparently they don’t let wives pick and choose which parts to keep or take out. But there is also a tremendous amount of fear. Despite the hope, there is always lingering uncertainty, anxiety, trepidation, waiting for the other shoe to drop. It’s an experience I wish on no one. It takes a heavy toll on everyone it touches. Glioblastoma is deadly. There is no cure. 

In November 2022, two days after having a seizure, countless tests, and needles, and prods, and TWO brain surgeries… one on Halloween, which I find to be particularly fitting, Adam walked out of the hospital six days later… on his own two feet, wearing a Fuck Cancer shirt, hugging all of his nurses, making his own good bye rounds throughout the hospital, smiling and strong, annoying as ever, boasting about his rapid recovery speed, without a trace of obnoxiousness left on the cutting room floor. (Despite my requested removal in advance.) It was all still there… every bit of what makes Adam, Adam. Everything but ninety five percent of the brain tumor, the remnants of which he now has to live with. 

So here we are now… June 2023 and a new phase. My husband has a brain tumor. He has brain cancer. He has Glioblastoma, the grand mother fuckers of cancer. He always has to do it big… The unwelcome guest is officially part of the family now and with it, life continues. The fear and anxiety intensifies as we embark on this new phase… a phase where we look to surpass statistics and beat odds. It’s a pretty scary phase to be honest. Is he on the path to becoming one of the just six percent that live five years? Could he be a medical marvel, a miracle, a unique unicorn exceeding all conventional expectations? Could he dominate this seemingly impossible challenge? That should be obvious, knowing Adam. Or is he on the path to succumbing to this disease? As Adam's brother said, "Adam has always been a winner." But things are different now.

So many questions. So many unknowns. Nothing is promised. Nothing is certain. I’m really not sure how to do this. I don't know how to even accept it. It reminds me of when our daughter was diagnosed with type one diabetes… everything changed and you just do it. You have no other choice. So that’s where we are now. We’re just doing it. We’re just trying to stay sane. Some days we’re doing it well, some days… you can imagine.

For all of you who have asked how I’m doing, I’m doing okay. I’m not, but that’s okay too. I have none of the grace and poise… yes poise, that Adam does. I have the fear and the hysteria, and a whole bunch of rage and anger. Maybe I should respond with,  “maybe I’ll someday be okay,” or “sometimes I’m okay,” or “what does okay look like?” But I will probably just say, “I’m good,” and keep it at that. “Thanks for asking.”

 As of writing this today Adam is about 10 months post diagnosis, 8 months post surgery. With Glioblastoma you first count your victories in months. Today his MRI scans have all revealed that Adam is keeping the cancer at bay. This is a remarkable feat. He has partial sight loss in his right eye and some short term memory issues, but despite missing a pronoun or two, his speech is really impressive and he is very resolute in his drive to beat this. Even though he’s put up a very handsome and optimistic veneer, this cancer is a full time job and Adam certainly isn’t immune to the malaise and fatigue of experiencing this deadly disease and it's symptoms. He’s not just fighting to keep the tumor stable, but also fighting the fear and the deep cavernous, psychological rabbit holes that statistics and algorithms and science can take you to. It is cancer of the brain after all. I know there is an odd, ironic, cosmic joke somewhere in all of this, but I fail to find the humor at the moment. 

In this phase we are tested by the numbers. Statistically speaking right about now, Adam’s malignant cancer cells should start to divide and spread. In many, many Glioblastoma patients within this timeline, they already have. That’s good news for Adam. His tumor is responding to treatment, no growth, no spread. We’re right on the cusp of seeing where he will fall within all of these median meaurements and Adam is far from average so we remain positive. One would be a fool to give up on Adam. It seems stupid to say these next few months are crucial for our family, as they all have been, but they truly are. It’s a time where paranoia and over analysis can creep in, but our family is staying strong. And we just couldn’t have done this without the help of our family, friends, and even the kindness of strangers. Glioblastoma has taken so much away from us, but we continue to do everything we possibly can to persevere. The one thing we won’t let go of is Adam.

We Are Not Giving Up.

I regret it has taken this long to properly speak out, my apologies yet again. We are going to try to do better with updates and getting Adam on camera for all to enjoy. We sincerely want to make sure we let everyone know how tremendously grateful our family is for all of the love and kindness extended from generations old relationships spanning the country and abroad, to former students, neighbors, and new friends. We are truly touched and quite honestly overwhelmed by the generous support for Adam and our family. Words can’t adequately capture our gratitude. Additionally, we want to thank the teams of surgeons, doctors, nurses, and medical staff who we have had the pleasure of working with and with whom we will continue to work with. 

Last, but certainly not least, we send our love and thanks to our families who have been immeasurably compassionate in the face of their own feelings.

No One Is GIving Up, Least Of All Adam. The Journey Continues… 

I Will Never Give Up On My Adam,

“We’re Doing Okay. Thanks For Asking.”

Mrs. Adam Schapiro

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