As many of you may know, in June I received some pretty devastating news at Roswell Park Cancer Institute. My wonderful and talented gastroenterologist found an anomaly on my yearly pancreatic endoscopic ultrasound. Another scope 3 months later, confirmed my doctor's concerns: the abnormality had grown. At that point, I was referred to a surgeon. After (a rather surreal) meeting with the surgeon, I was informed that part of my pancreas needed to be removed by a surgical procedure called a Whipple Procedure (pancreaticoduodenectomy). A Whipple surgery is one of the most complex, time-consuming surgeries around (some can last as long as 12 hours, most are between 6-8 hours). For more information on this difficult and arduous surgery click here:
https://www.pancan.org/facing-pancreatic-cancer/treatment/treatment-types/surgery/whipple-procedure-pancreaticoduodenectomy/. Needless to say, Kevin (my husband) and I were quite shocked by this news. Surgery was scheduled at Roswell on July 9th. Racing against time, what followed was a whirlwind of research, phone calls, research, more phone calls, and many tears.
Those who know me well know I am passionate about research. After learning I would need major surgery which would forever change my life, I immersed myself into the world of pancreatic cancer research. I was intent on learning all I could about pancreatic cancer, treatments, trials, immunotherapy, and naturopathy. (Everyone told me to stay off the internet, but I spent many a sleepless night reading about various treatments, oils-RSO, CBD, natural "cures", etc...).
It is at this waypoint my team of warriors joined in helping me navigate the murky waters of treatment options available to me. Navigating a major health crisis is really a full-time job. Many layers exist from health insurance, consultations, follow-up appointments, testing, more insurance issues, out of network coverage, what is not covered, denials from the insurance company, phone calls, hotel stays, long hours on the road traveling for 2nd and 3rd opinions. I will be forever thankful to my brother Scott for driving me to those first few appointments. (He even pulled over on our way back to Buffalo one night so Jillann and I could look at the beautiful, twinkling fireflies on a warm June evening)! That was a very memorable ride back from NYC!
After watching my sister (47) die from pancreatic cancer in 2010, I made it my mission to find some kind of help or test for this horrific, debilitating, life-sucking disease. I can not begin to tell you how many times I heard, "There is no screening for pancreatic cancer," "I'm sorry, I can't help you," "There is no test for this type of cancer, unfortunately". Luckily for me, in 2012, I stumbled upon a research study conducted at Memorial Sloan Kettering Cancer Center in NYC. This study was looking for the genetic link between family members who suffered from pancreatic cancer. Since I had 2 immediate family members who died young, that being my father at 42 and my sister at 47, I was accepted into this study. For the next 3 years, my husband Kevin and I went on a yearly jaunt to NYC to get an MRI, my bloodwork, and an office visit with Dr. Kurtz (we may have also had a few really nice dinners along the way as well)!
When I could no longer afford the Cadillac of all insurance plans (the one that allows you to go to any hospital, anywhere/anytime), I had to find someone within my network to assist me with this screening. (This is where the research comes into play again). It took quite a while, but I found the impossible right here in Buffalo! I will never forget that day....a moment of such clarity, it seems like yesterday...that a gastroenterologist at Roswell informed me he would take over my screening, and that it was very important for me (and my siblings) to follow his protocol. When he walked out of the examining room, I broke down in tears and sobbed while the nurse came in to give me my next appointment card! It was a miracle!
From that point, I really felt I was in the best hands! I was going to be okay because I had this compassionate, amazing doctor who was going to make sure I would never end up like my Dad or my sister! Thankfully I was assertive and pro-active. If it weren't for Dr. Bain, my story would be very different than the one I am telling today. I am truly blessed on so many levels and I have NO doubt my sister is keeping a watchful eye over me! Life is good. Peace-A (
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