Our guest post this week comes from Robyn Stoller, CancerHawk Founder and Patient Advocate. After losing her husband to cancer, she became empowered to help others navigate the online resources available to help them fight the disease. You can find Robyn’s website at www.CancerHawk.com. She’s also @CancerHAWK on Twitter, and has a Facebook page at http://www.facebook.com/cancerhawk.
The latest installment of our series, Through the Patient Lens.
In March of 2000, my 37 year old husband Alan was diagnosed with renal cell carcinoma. We had his kidney removed and other than 3-4 follow up appointments and scans a year, that was it. It was relatively simple. We had such a beautiful life with three phenomenal, healthy, thriving children. Life was perfect!
Then we came to the summer of 2009 and everything changed. I cannot remember how long Alan had this large lump on his right arm, but I think it was 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.
In the summer of 2009, Alan decided for no apparent reason that it was time to get this lipoma removed. And that is when our world changed. Hello pleomorphic rhabdomysarcoma, good bye happiness. Nothing was as it appeared to be. And it got worse and worse from there. It was pure luck and an incredible support system that helped my husband and I better navigate this terrifying cancer journey.
As if fighting cancer wasn’t hard enough, we had to find treatment alternatives- both medical and non-medical; travel assistance to get from Houston to DC after Alan had brain surgery; trying to find what we felt was good, sound nutrition information; how to appeal insurance decisions; negotiating payments to doctors; etc. This took tremendous time and energy that was desperately needed to fight the cancer and raise a family.
Fast forward to today…. Alan passed away on July 12, 2010. So now, I am a 43-year old widow (ugh…I hate that word) raising our 3 amazing kids. Alan & I spent many hours talking about the wonderful things we were going to do after he overcame his cancer. It never occurred to me that the cancer would be the victor.
I’ve learned a lot along the way about cancer, about people, about life. I’ve learned about things I never even knew existed. When I ask myself what can I do with the lemons that have been thrown my way, I know what Alan would say. He’d say, “Make Lemonade.”
There are a ton of amazing resources available to help people fight cancer. I hope to make it easier for others on this journey by making it easier to find what’s out there. That’s what CancerHAWK is all about. CancerHAWK is my lemonade.
Thank you, Robyn, for sharing your caregiver story!
Do you have your own inspiring message to share? Please visit Share Your Story and tell us about it. We’d love to hear from you!
For more installments in our #PatientLens series click here.