Mark your calendar for Giving Tuesday! Between Dec. 1 and 3, your gift to the National Brain Tumor Society will be TRIPLED, up to $100,000, thanks to the generosity of Drs. Matthew and Diana Gordon, LifeLegacy, and NBTS’s board of directors.
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How was I going to survive when my husband was dead?
This was something I never in my wildest dreams considered having to contemplate. Yet here I was. My Andrew was slipping away following a massive seizure brought on by his brain cancer. And I was told by his doctors to say my goodbyes. How could this be my life?
* * *
I was a girl who had it all and knew how lucky she was. Great family, awesome friends, and well-educated.
Then in college, I met Andrew and my great life got even better. We just…clicked, I don’t know how else to describe it. We had what would become the cliché ‘storybook romance’: fell in love in college, got jobs in NYC, moved in together, got engaged, wed, and then came the baby; our amazing daughter, Hannah.
Andrew was always the man of my dreams and I didn’t know it was possible to love someone any more than I already loved him. But seeing him with our daughter, I fell more deeply in love than I ever imagined possible. I’ve never seen a man show so much affection to his child; he was smitten.
Our first year together as a trio was perfect…until it wasn’t.
Andrew had often dealt with occasional headaches, but nothing a couple of Advil couldn’t handle. Then in October 2017, suddenly the headaches came on more often, and with greater ferocity. The Advil wouldn’t touch them. A trip to the doctors raised no immediate red flags.
Two weeks later, his vision started getting blurry and he was seeing double, and our lives forever changed. That life that I loved. That life that was so special and so cherished and that I appreciated every day.
Ultimately, he collapsed at home on November 19, 2017. My strong, able-bodied, otherwise healthy husband was lying unconscious on the living room floor, and for the first time in my life, I dialed 911. We were terrified.
We spent a month in the hospital, running this test and that test. Holidays came and went, celebrated in the Neuro wing, and we still didn’t have answers.
A move to another hospital for a second opinion and more tests, birthdays gone by uncelebrated (his and mine), and a month later, it seemed his case would never be solved.
Eventually, he had surgery and began what we thought would be his recovery…but then we finally got our answer. Andrew had a biopsy on January 19, the day before my 31st birthday. It took three weeks after the biopsy, but that cold Monday in January 2018, at age 32, he was diagnosed with brain cancer, an incredibly rare form of the disease for some of such a young age. The odds of him receiving such a diagnosis was infinitesimal. Yet here he was, with cancer in the leptomeninges of his brain. The prognosis was not good.
There was never a glimmer of hope, a fighting chance – my husband had untreatable cancer and was going to die.
How was this happening to me? This wasn’t my life. I had it all, remember? How could it be taken away from me?
Andrew was scheduled to begin treatment with radiation and chemotherapy, with the goal of keeping him comfortable until he passed away. But we never even made it that far. Three short weeks later, on February 15th, 2018, Andrew suffered a massive seizure as we were meeting with the radiation oncologist to discuss his treatment plan. He passed just after midnight on February 16th, surrounded by friends and family, who had clung by his side once we were told it was time to say goodbye.
It’s a horrible thing to watch the one you love suffer and die. And it levels you the moment you realize you have to live the rest of your life without him.
How was I going to raise my child alone? How was I going to take care of our house? How was I going to survive when my husband was dead?
Yet, I’m doing it. I still don’t know how, but I am.
I am asking for help (like most new moms, I struggled with this) and receiving it. I have my beautiful little girl to keep me going, and the occasional sign from Andrew that lets me know he’s still there.
This is raw. This is my life and I take it one day at a time. Why this happened to us, I’ll never know, but I’m going to survive the best way I can.
Editor’s Note: Rachel’s story is heartbreaking, to say the least. However, we felt it important to publish as because Rachel expressed how sharing her story has been cathartic for her during this extremely difficult time. The post is provocative and poignant, but also ends with a very important and powerful message about how those impacted by this terrible disease can begin to cope. Further, as we stated at the beginning of Brain Tumor Awareness Month, our goal for this year’s BTAM is to “urge all Americans to become better educated about the brain tumor patient experience,” and highlight and stress, “the real, urgent, and at times heartbreaking obstacles patients and care partners face,” using digital storytelling to raise the voice of the brain tumor community for the country to hear. > Get involved and take action to help us change these devastating realities