Editor’s note: For each of us involved in the cause, it started with someone — the reason we were compelled to get involved with the Pancreatic Cancer Action Network (PanCAN) and change the story of pancreatic cancer. Kristen Alvarez’s “someone” is her husband and hero: Alejandro Luis Alvarez. Below, she shares his story.
April 15, 2013. We were sitting in an office listening to a doctor tell us Alejandro had pancreatic cancer. Numb, we listened to his diagnosis and advice, asked any questions we could think to ask, and walked back to the car in silence. We got in the car and broke down…momentarily. Then we picked ourselves up and decided right then and there we were going to fight this with everything we had, from every angle we could, and figure it out. We were not going to look at any grim statistics; he was a statistic of one and that was all we needed to remember.
We soon discovered that when a loved one is diagnosed with an aggressive and/or rare type of cancer, you are immediately thrust into a world of confusion, doubt and the dreaded unknown. It can get overwhelming and leave you feeling somewhat alone and completely in the dark. You leave each doctor’s appointment thinking you have asked all the relevant questions and taken all pertinent notes. Your brain is swirling trying to comprehend all of the information given, and by the time you reach home, you have thought of one million more unanswered questions. You have to comprehend and act quickly. There is no time to waste. This cancer is aggressive and we do not have the luxury of time to make life and death decisions that are being thrown at us.
The internet is full of information on all types of cancers, potential treatments, and so-called “miracles,” but what’s real? You have to make sure you go to reputable sites to get information. In my searches, I found the Pancreatic Cancer Action Network and immediately contacted them. They were so kind and caring and helpful and INFORMED! And all of a sudden, we didn’t feel so alone anymore. We participated in PurpleStride Silicon Valley (Team Alvarez – The PNET Gallery), and Purple Light events. Alejandro knew he was surrounded by people who “got it” and really understood what he was going through.
Alejandro underwent a Whipple procedure soon after diagnosis, in May 2013. The pathology revealed that he had a pancreatic neuroendocrine tumor (PNET), and we were hopeful that the surgery was the cure for this rare type of pancreatic cancer. Unfortunately, the cancer metastasized to his liver nine months later and we started learning about the (few) options available. He tried various chemo regimens, a radioembolization and a chemoembolization, and although some of these treatments slowed the progression, none of them could stop the aggressive tumor growth. We were told there was nothing else they could try. Alejandro passed away in my arms on Feb. 13, 2016, at the age of 53, leaving me, our children and grandchildren far too soon.
Throughout this horrible ordeal, my husband remained positive and grateful for the life he had. He had an infectious smile and was such an inspiration to everyone around him, even during the darkest times. He always said he had cancer but cancer would NEVER have him. He lived that truth every day.
After he died, I knew I wanted to stay connected to PanCAN – they are such a loving and supportive community. They understand me. Our team still participates in PurpleStride and PurpleLight – in Alejandro’s memory now.
On my grief “journey,” I decided to go on a few spiritual walks, walking a portion of the Camino de Santiago in Spain (Alejandro and I had once talked about walking it together) and then one in the U.K. I carried a Wage Hope banner on my walking stick and (even though I probably wasn’t supposed to!) left them all along the path. So many people would stop and tell me they had seen them and ask me what they meant. I was all too happy to explain. Now I must pick up the fight where he left off and spread awareness because I Demand Better for future pancreatic and pancreatic neuroendocrine warriors.
The PNET Gallery at PurpleStride Silicon Valley
I will continue to walk softly through life and carry my big “Wage Hope” stick, spreading awareness everywhere I go. I am part of Team Alvarez – The PNET Gallery, and I will be heard.