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Added on Wed 3rd Oct 2012 1:23pm   Last edited on Sun 28th Oct 2012 10:45pm
#1

Robyn Stoller

Posts: 1
Location: United States
Member since: 9/07/2012

What is CancerHAWK?

Hi!  My name is Robyn and I have created a website called .cancerhawk, where I write about resources that can help anyone navigate their way through a diagnosis of cancer. 

 

My Story:  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 rhabdomysaa, good bye 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 very 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 oh by the way, he likened chemotherapy to baking a cake- you follow the recipe, and most of the time, the cakees out just right. I mean REALLY?!).  After that though, we were fortunate enough to meet and work with the most incredible group of forward-thinking researchers & oncologists from Champions Oncology.  I LOVE them!  They helped add 6-7 quality months on to Alan’s life. 

But in the end, on July 12, 2010, we lost our battle.  Alan at the young age of 46 passed away.  Life isn’t fair, that’s for sure.  Alan has a smile that could light up a room.  He was the most incredible, passionate, smart, funny, loveable man, husband, father & 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; we cry over our loss and how unfair life feels at times.

But here’s the thing- Alan was also the most upbeat, positive, glass-is-half-full kinda of 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 then think about Alan and what he would tell me to do.  I think about our 3 children and I realize that if I don’t get moving, I’m going to mess up this beautiful life 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….

Why CancerHAWK?

During our cancer journey, Alan & 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 I better navigate this terrifying cancer journey.  I have to say that we are so fortunate to have the BESTEST family & 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 to get from Houston to DC after Alan had brain surgery; we had find what we felt was good, sound nutrition information since we both felt that what you put into your body affects your body; we had to learn how to appeal insurance decisions, negotiate payments to doctors, the list goes on.  Finding the “right” people to help us  took tremendous time and energy that was desperately needed 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 site about resources and innovative treatment options hoping to make it easier for people to find what’s out there.  Got questions?  Or know of resources you know about that can help others navigate cancer?  Let me know and I'll do my best to help.  xoxoxoxo