H O P E
There is a four-letter word people like to use when talking about cancer. Mhm, that's the one. But the one I prefer is HOPE.
I know, that's not the one you were thinking. But contrary to expert opinion and all those horrible statistics, I believe I have every reason to use that word.
You see, after the initial shock of being diagnosed with one of the worst-case, worst-prognosis cancers, Glioblastoma (or grade IV brain cancer), there has been nothing but good news - okay, that's not true. The bad news piled on. At first. But...the bad news lead to digging deeper. Then to some really, really good news. Some might even say miraculously good.
My mom received the same diagnosis when I was 27 years old, bright eyed and planning my grownup life. I was just getting started..but life had other plans. I quit my job and cared for my mom until she died 18 months later, at 52 years-old.
I attended my mom's funeral in a black dress from Motherhood Maternity. I was six months pregnant with Quinn. My mom never got to meet her firstborn grandson.
In the wake of that loss, my grief manifested as anxiety. I was a mess. I couldn't function. I worried about everyone. I thought if I didn't watch him constantly my baby would die. It was consuming.
But eventually I used it as fuel: turned anxiety into action. I was not about to face the same fate as my mom. I was not about to lose my babies. So I completely changed my diet, read books on health and diet and “food as medicine,” started exercising religiously. I fell in love with yoga and have lived like I could live forever if I just did everything "right." I have tried to raise my children with the empowering message that you can control your own health by making good choices.
So, when 15 years after losing my mom - freshly divorced, with 4 young children of my own - I found myself in the hospital, confused to hear I was in a car accident and lucky to be alive….only to be told I had Glioblastoma...well, you would expect I would be devastated. I would have expected I would have felt devastated. Abandoned. Cheated.
Why me? It’s too cruel. It’s too much. It’s not fair.
...and I was doing ALL the things. But I didn't respond in that way at all. It was weird. I was calm and almost relieved. It was like this was the moment I'd really been preparing for all my adult life. I felt armed, dangerous and ready. I wasn't doing all that to avoid getting sick; I was arming myself for battle.
My response: why not me?
With eyes open to the scary statistics and heart knowing what I always feared was likely true - this thing is bad; and it’s genetic; and now I'm a mom; and a big sister to three siblings with children of their own, I knew this was a battle I had to win.
I visited 5 neuro-oncologists within two weeks of receiving brain surgery! I undoubtedly found the best one, and it was worth the search. Dr. David Ashley at Duke University is a gift to the cancer world. He has access to the most current medical trials, the newest information, the best researchers…and, most importantly, he took me seriously when I talked about my mom. They still had mom’s tumor tissue in storage at UIC hospital so Dr. Ashley started testing. He found the genetic link in my mom’s tumor tissue and mine, something new in the realm of research.
Moreover, my oncologist suggested a possibility,even potentially a cure.
Yes, another four letter word you rarely hear in conjunction with cancer: CURE. It’s too new to be likely but too logical to be impossible. And the stats are there. As of 2018 over 100 patients treated by Dr. Saskia Biskup, using their body’s own immune system and rare genetic makeup to recognize and attack sneaky, deadly cancer cells which would otherwise start a new tumor, were treated and nearly every single one of her patients was still living, five years later.
This treatment, which is faring well in clinical trials in the US, is readily available now in Germany. Clinical trials in the U.S. meant waiting for a recurrence, then possibly risking rejection into the trial - or only receiving a placebo. I didn't want to wait for it to come back. And start over.
So I chose to see Saskia at CeGat. It meant 11 trips to Germany over two years. And a huge up front expense.
But it was worth it. HOPE.
Hope is now reality. I have lived 5 years longer already than expected. And I am still cancer free. I now have hope that I will live. Hope that my four kids will grow up with a mother. Hope that if any of my siblings or theirchildren have the same genetic makeup as me, they too can receive the vaccine and they too will live.
I don't know what the future holds. I know I did my part. I had the surgery. I fought back to regain my strength with daily yoga, even during concurrent radiation/chemotherapy/ketogenic diet/intermittent fasting - even when the doctors didn’t think my body could handle it. I diligently maintained a strict, clean ketogenic diet to avoid fueling the cancer with sugar. I sought out all the medical help I could find. I read the books and prayed. And I have kept a positive attitude.
But more than anything else, I recognize I have not done this alone. Not by a long shot. There have been miracles all along my path.
From the snowbank that cushioned my car to the firefighters who came to the scene of the terrifying crash that started this whole thing, to the spectacular brain surgeon who removed all of my tumor without in anyway impacting my brain function upon recovery….to my community of pray-ers and the support system of parents and teachers at my kids’ school…to my steadfast friends who’ve cared for me in every way through this, to my family who’ve all had to travel to be with me at home and on my trips to see doctors, to the random encounter at the beach cafe where a conversation with a friend was overheard by a retired leader of neuro research at U of M…the miracles are countless.
And the happiest miracle could be the friendship that developed into undeniable, soul-connecting love, while undergoing all of this. I married my soulmate in November 2019. Second chances.
I am so overwhelmed already by the generosity of friends and strangers alike since my life flipped upside down in February. 2018.
I got my second chance because of you!
I promise I'll make your investment worth it; I'll fight like hell. I'll give my family hope. I'll be a warrior in truly finding a CURE for any of us who may face cancer in our lifetimes. THANK YOU.
