In March of 2000, my 37 year-old husband, Alan, was diagnosed with renal cell carcinoma. We had his kidney removed and, other than three or four follow-up appointments and scans each year, that was it. It was relatively simple. We had such a beautiful life with three phenomenal, healthy, thriving children. Life was perfect!
Then came the summer of 2009 and everything changed. I cannot remember how long Alan had a large lump on his right arm, but I think it’d been there ever since I had known him (15 years). Many doctors, including his oncologist, looked at his arm and said, “Do nothing. It’s a simple lipoma and unless it is changing, just leave it. It will require major surgery to remove and it’s not worth going through that for something that is nothing.” How wrong all these medical professionals were.
That summer, for no apparent reason, Alan decided it was time to get the lipoma removed. And that’s when our world changed forever. Hello pleomorphic rhabdomysarcoma, goodbye happiness. Nothing was as it appeared to be. And it got worse and worse from there.
It felt like we were living on a rollercoaster—one filled with more downs than ups. However, we truly believed that we could beat this monster called cancer. One of our favorite doctors told us, “As long as there is life, there’s hope. Never give up and never stop trying.” And that’s what we did.
We “fired” our first oncologist who I often refer to as “Dr. Schmuck.” (He gave up on us and then got angry when we decided to work with different doctors. And he likened chemotherapy to baking a cake—you follow the recipe and, most of the time, the cake comes out just right. I mean, REALLY?!) After that, though, we were fortunate to meet and work with the most incredible group of forward-thinking researchers and oncologists from Champions Oncology. I LOVE them! They helped add six to seven quality months to Alan’s life.
But in the end, on July 12, 2010, we lost our battle. At the young age of 46, Alan passed away. Life isn’t fair, that’s for sure.
Alan had a smile that could light up a room. He was the most incredible, passionate, smart, funny, loveable man, husband, father, and friend. There is not a day that goes by that my kids and I don’t think about him. We laugh at funny things we remember… and cry over our loss and how unfair life feels at times.
But here’s the thing. Alan was the most upbeat, positive, glass-is-half-full kinda guy. And I know he would tell me, “Life ain’t fair sweetheart, but it’s STILL good.” So although I have days when I don’t feel like getting out of bed, I think about Alan and what he would tell me to do. I think about our three children and I realize that if I don’t get moving, I’m going to mess up this beautiful life that Alan and I created together. So move I do… and I try my best to enjoy every day as it is. You see, no one is guaranteed a tomorrow. Not me, not you, not the person with cancer. It’s not easy. That’s for certain. But I try….
During our cancer journey, Alan and I spent many hours talking about the wonderful things we were going to do after he overcame his cancer. And when I look back on that hellacious year, I realize this: it was pure luck and an incredible support system that helped my husband and me better navigate this terrifying cancer journey. We were so fortunate to have the BESTEST family and friends ever.
But here’s the dealio (as my daughter always says)—fighting cancer is hard. Really, really hard. Finding things you don’t even know about that might help is also really, really hard. I mean, how can you search for things that you don’t even know exist?? We had to find other treatment options, both medical and non-medical. We had to secure travel assistance from Houston to DC after Alan had brain surgery. We had to find what we felt was good, sound nutrition information as we both felt that what you eat certainly affects your body. We had to learn how to appeal insurance decisions, negotiate payments to doctors…the list goes on and on. Finding the “right” people to help us required tremendous time and energy…time and energy that were desperately needed just to fight the cancer and raise a family.
There are a ton of amazing resources available to help people fight cancer. So I created a blog (cancerHAWK) about resources and innovative treatment options in the hope to make it easier for people to find what’s out there.
Got resources you think will help others navigate cancer?
Please email me at Robyn@cancerhawk.com
P.S. In hopes of finding a cure for sarcoma, I am partnering with a friend who lost his father to this same dreadful disease. We founded the Peregrine Cancer Foundation.
Trying to make sweet lemonade…