Alexandra’s Story of Courage

Categories: Success Stories

I’m a member of the Young Professionals Committee for the Western PA chapter of the NPF. I’d like to share my story of why I support the National Pancreas Foundation.   Well, it started a little over 3 years ago when I was 24 and living in Dallas. I had recently moved from LA, where I was working in film production. Working in film and becoming a producer had been my goal since high school. My dream took me to LA after college, then in July 2010 to Dallas, where I was working for the Dallas Film Society as the Special Events Manager. For a few months leading up to March of 2011, I hadn’t been feeling myself – I was having digestive problems, a sharp, searing pain in my lower left abdomen, and I had lost 10 pounds inexplicably. Several doctors and specialists told me it was just stress, but after months of the same symptoms, my mother broke down in hysteric tears and begged me to see a doctor, so I agreed to get checked out by my GI. When she heard my symptoms, she agreed it was probably the stress of moving to a new city, but decided to do a CT, just in case, since I’d lost 10 pounds in a month for no reason. When the CT found a mass in my pancreas, my doctors assumed it was just a fluid-filled cyst, and scheduled an endoscopy to find out for sure. They told me not to worry about it.

On March 8th, 2011, I was sitting at one of our conference rooms at the office when I received a phone call from my gastroenterologist’s office to give me the results of the endoscopy and biopsy I’d had two weeks prior. So, I was sitting in the office working late on this Tuesday night, when a nurse from my GI’s office called to tell me that my GI was at a conference and wouldn’t be able to speak to me for a week, but she’d asked the nurse to pass along my test results since I’d already been waiting for 2 weeks to get them back. I’ll never forget grabbing my pen to write down the results as the nurse said to me, “the mass on the tail of your pancreas is a solid pseudo-papillary tumor with cancerous tissue…”   I remember writing it down word for word, and tracing over & over the word “cancerous” as we talked….I remember asking the nurse, “what does that mean, does that mean I actually have cancer?” An avid Grey’s Anatomy fan, I knew the youngest person ever diagnosed with pancreatic cancer was 28, so I said to her “this just can’t be right, I’m only 24, I can’t be the youngest person in the world with pancreatic cancer.” I’ll never forget how uncomfortable she was; answering these questions my doctor should have been answering, and telling me that she didn’t know what my diagnosis meant but that if there’s cancerous tissue, then I must have pancreatic cancer.

To this day, I remember every word of that conversation, or more importantly I remember the shock, the numbness I felt when we got off the phone. On top of just being told that I had cancer, I had also just lost my health insurance – I won’t go into detail but I was a freelancer at the time, and even though I’d always had private insurance, I lost it just when I really needed it. My mother, being the amazing woman that she is, started researching online instantly to find out more about this tumor and to find programs that could help people in my position financially.

While my mom researched, I went home that night, fell down on my bed and began crying and praying for hours. I’ve never been more scared in my entire life than I was that night. Even though I didn’t know much about pancreatic cancer at that time, I knew it was deadly and I was terrified that I would maybe only have a few more years left to live. I’ll never forget lying on my bed, saying to God, “I don’t care that I’ve never made a movie, I don’t care that I’m not a producer – I haven’t loved my family and friends enough yet, I haven’t had kids yet, I haven’t helped enough people yet, I haven’t made any difference or impact with my life yet.” And I begged God to help me get through this, and vowed that if I did, I would start making a difference with my life.

Well, I learned a lot more about my specific type of tumor later that week, and as it turns out, I didn’t have the typical pancreatic cancer that is lethal for 96% of people diagnosed within the first five years, but my tumor was extremely rare. I learned that solid pseudo-papillary tumors are usually found in younger women, they are extremely non-aggressive, and have a 95% cure rate with surgery. This, of course was very comforting to learn, but at the same time, as I met with several different doctors and my family and I researched countless studies on this type of tumor, it was amazing to me how many different opinions I received and how little known about the cause of these tumors and the symptoms. It was frustrating to say the least, but I was becoming confident that this would be curable, so all I had to face now was the surgery.

Through my mother’s research, she found a clinical trial on “neoplasms of the pancreas” at the National Institute of Health in Washington, DC and we submitted my test results to apply for the trial. Once you are accepted into a research trial at the NIH, they pay for all of your medical and treatment costs, as well as your transportation to and from DC. I was already $16,000 in debt from the diagnostic testing, and so my family and I were desperately hoping this would be an answer to our prayers. Sure enough, I met with the doctors and because of the rarity of my tumor, they ended up desperately wanting me to participate in their trial. So they scheduled me for surgery on April 7th at the NIH to remove 10% of my pancreas and my spleen. I’ll spare you all the details but none of us were expecting this surgery to be quite as difficult as it was to recover from, mostly because it’s open abdominal surgery and your pancreas controls your entire digestive system. But, fortunately they at least spared my spleen because when they opened me up they found that nothing had spread to my lymph nodes.

After a 9 day hospital stay, I was getting ready to check out, and I thought I was finally in the clear of my worries. For weeks, I’d been afraid of what affect losing my spleen would have on me, I’d been afraid of getting a fistula during surgery which can be lethal, and mostly I’d been afraid of what they’d find when they opened me up. But by the end of my hospital stay, all of those fears had been put to rest. Until, I was packing up, and my doctor came to see me and told me that they would call me in a week to let me know if I needed chemo. This absolutely shocked me. Chemo had never been mentioned to me before, and I realized quickly that I was also terrified of that possibility. I just wanted to be healthy again – it was bad enough that I couldn’t stand up straight, my stomach muscles had been ruined, I’d lost another 10 pounds, I was feeble and in pain and I just wanted to be past it and be healthy again.

Well after a week of more anxious waiting to hear back from doctors, I was sitting at the Max & Erma’s in Robinson with my mom, sister, and her two friends, when my doctor called and said everything they found in the test results were exactly what they were expecting – I was completely cured from the surgery, I didn’t need any follow up treatment, I just had to get a CT once a year for 5 years to make sure nothing returns, but the odds of re-occurrence are under 5%. When I told my family what he said, my mother, my sister, and even her two friends all burst into tears. The relief was unbelievable. And for the first time since March 8th, I thought to myself “I am really so fortunate. How many people with tumors in their pancreas are as lucky as I am?” This was absolutely a challenging, trying experience – but I could either be angry about it, or I could do what I’d promised God on March 8th and change my life for the better because of it.

I moved home to Pittsburgh 7 months after my surgery, and I decided to get out of the entertainment business and begin working for a nonprofit. I wasn’t completely confident when I first made this decision, but I also remember thinking “I don’t ever want to forget how I felt when I thought I was dying.” When I thought I didn’t have much time left, all that mattered to me was having more love in my life, and doing more for other people – all that mattered was making a difference.

So when my friend Bryan Rohm asked me to join the Young Professionals Board of the National Pancreas Foundation, I was so excited! It was because of a research grant that I not only didn’t have to file bankruptcy at 24 years old, but I also was able to get excellent treatment. I thought about how much was unknown or disagreed upon by my doctors about my specific type of tumor, and how much there is to learn. My doctors told me that they didn’t think my symptoms were related to my tumor, they told me that I would still have my symptoms after the surgery, that this was a chance finding. But as soon as I recovered from my surgery, my symptoms went away. Maybe I’m wrong, but I believe my symptoms were related – they’re gone now, and I haven’t had them since. And so I think about how much more there is still to learn and how hard it is to detect pancreatic tumors. And all of that requires more research grants and clinical trials.

Two of my fellow YP committee members have lost relatives to Pancreatic Cancer, and I’m so sorry for their losses – I’ve learned so much about pancreatic cancer in the last four years, it’s a terrible disease, all pancreatic diseases are, and it’s a hard reality to stomach. But, at the same time, I’m excited and I’m encouraged as I get more involved with the NPF – they support this type of necessary medical research, and progress is being made. Individually, our roles might be small, but together, we can make a difference. We can contribute to finding better treatments, better detection methods, and better prevention.

Immediately following my surgery, my doctor at the NIH told my mother that she saved my life by getting me into their medical research trial. That’s just another way my mother has made a huge difference in my life. And now, my hope is to pass it on and make a difference for others. That’s the hope of every member on our YP committee and so on all of our behalves, I want to thank everyone from the bottom of our hearts who gives their time, talents, and treasures to support to the National Pancreas Foundation.