Photo by Stefan Sheerin & Monica Marie Hernandez
Moving halfway across the country from San Antonio, Texas to Scranton, Pennsylvania is difficult even under the best circumstances. Moving almost 1800 miles away with two rare diseases seemed like an almost impossible feat. I left behind all my family, support system and the doctors who have treated me for over 25 years for a chance at a slightly more normal life.
Two of the reasons for the move – a surgery that will improve my quality of life and getting a second opinion and treatment for an inoperable desmoid tumor that has been growing for two years without any type of medical intervention. What convinced me to seek another opinion was my longtime gastroenterologist’s concern about my health.
I was diagnosed with the intra-abdominal desmoid tumor over a year ago but my doctors believe it’s been growing since my 7 or 8 surgeries two years ago. The tumor is attached to my small intestine and is now large enough to feel. One E.R. doctor knew exactly where it was located by simply looking at my abdomen. The pain is constant now and because of my history I do not take pain medications at home, so at times the pain is almost enough to send me to the hospital.
I was told very bluntly that without some kind of treatment it would cause more pain and eventually cause my death. For various reasons it cannot be removed surgically and radiation is not an option. That leaves chemotherapy and because of all my previous surgeries and the fact that I don’t absorb medications in pill form I can only have IV chemotherapy. It was definitely an eye-opening conversation.
Since I had been trying unsuccessfully for a year to receive treatment, I decided it was time to refocus and decide what I wanted to do about my health and my life. My best friend and fellow writer Stefan and I had been planning for me to visit him in Scranton for Christmas and also to see a doctor for a second opinion. After even more discussion we moved my visit to September. After three weeks and many late night talks I’m now a Pennsylvania resident.
My health wasn’t the only reason I decided to move. Spending time with Stefan was also a big factor in my decision. My health has helped me to realize that tomorrow might not come so I’m going to wring every ounce of happiness and joy from this far from normal life of mine. Yes, my life is difficult and often physically and mentally painful. Yes, I get frustrated and depressed at times but I’ve learned to cherish every moment, whether beautiful, happy or even painful, that this world and life offers me. Every second I have is a gift so even my bad pain days are a blessing. Those are my Butterfly Moments.
One of my most cherished Butterfly Moments was moving in with Stefan permanently and our decision to get married. Even though I miss my family, I know my choice is the right one and also makes both Stefan and I happy. Sometimes the most difficult and painful road can lead to happiness that you never expected to experience. This is what gives me hope to carry me through my next challenges.