Life, Love, Christmas and Cancer

Poetry and photo by Stefan Sheerin of FB page Out of the Light, Away from the Darkness

Life sometimes goes too fast for us to stop, take a breath and reflect. That’s how it’s been for me and now that the holidays are here I finally have a bit of that time.

I start chemo on December 26^th. That’s my biggest and best Christmas present ever. It might seem strange that I’m looking forward to it but when you consider the past 18 months’ struggle you’ll understand why.

I was diagnosed with an inoperable abdominal desmoid tumor in summer of 2015. Radiation is also not an option so that left chemo. Even with chemo I have limitations. After over 2 dozen surgeries and losing all my large intestine and several feet of small intestine I have trouble absorbing nutrients and oral medications. Which means oral chemo may not work.

That wasn’t even the only problem I faced. The worst part of my story is that I couldn’t even get an appointment with an oncologist. I tried in my hometown and as far as 4 hours away but there were insurance issues, doctors not taking new patients and even an office that no matter how many times I called and left messages or talked to receptionists wouldn’t give me an appointment. When my longtime gastroenterologist told me that without treatment I would die, I made a decision that probably saved my life and definitely changed it.

I decided to move 1800 miles away from all my doctors, including ones that had seen me grow up over 28 years, my family and all my support system. I left behind my home in the hopes I could find a doctor who could help me. I’m lucky that I had a very good friend, now fiancé, who invited me into his home and was willing to become a caregiver for me.

I was also lucky because after getting my insurance straightened out I found excellent doctors thanks to recommendations from a fellow F.A.P and desmoid warrior who lives less than 25 minutes away. On a snowy December Monday morning I had my first appointment with my primary care doctor and by Friday I had an appointment with an oncologist and he had decided on a course of action. Which brings me to this point-starting my daily chemo med the day after Christmas. It’s the first step to finding a drug that may help at least stabilize my tumor.

Am I hopeful? Yes. At this point I’ll be happy if the chemo just stops the growth of the tumor. If it shrinks the tumor I will be ecstatic. I accepted the fact that I may not live a long life when I was 15 so to me every day I have is a gift that I didn’t expect.

I hate that I had to leave all my family behind to finally find doctors that would treat me but, in the end, it was the best thing for me. It is the biggest life change I’ve ever undertaken and it was especially hard since I am disabled and have 2 rare diseases, chronic pain and other chronic illnesses but it is also the best decision I’ve ever made.

If someone had told me last Christmas that I would move halfway across the country, see more snow in 3 months than I have in 43 years, and start chemo while planning my wedding, I would have thought they were crazy. But here I am and with luck I’ll still be here in 5 and 10 years. After all, we all need goals. For now, I’ll enjoy my new life and all the Butterfly Moments that my fiancé, Stefan, and I are making.

Butterfly Moments and a Major Change

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.

Father’s Day

Normally I would write about my stepdad on Father’s Day since he’s the one who helped raise me and has been there for us since I was diagnosed. He has been a chauffeur, physical therapist and wound care nurse so he knows how much I appreciate his presence in my life.

This is instead about my friend Stefan who happens to be a single father with a teenage daughter. Why is it about him? Because I see quite a few memes about deadbeat dads and so some people tend to forget that there are single dads out there who are doing a pretty good job. Stefan happens to be one of those.

We all have different ideas about what makes a good father. To me, a good father is one who not only provides the physical essentials for you but he also provides unconditional love, emotional and mental support and an example of what a good man is. Stefan uses his experiences to help guide his daughter so that she can learn from the mistakes he’s made.

I’ve been on the phone with him while he was doing his daughter’s hair or helping with makeup and advice. I’ve listened to him comfort her when she needs it. I’ve heard his lectures and discussions with her and their laughter. I’ve read the words of wisdom he’s written for her and shared on his Facebook writer’s page.

He may not be the most traditional dad but he’s the type of father she needs. He also reminds me of my stepdad and in my opinion, they’re two of the best fathers I know.

Stefan would be the first one to say he doesn’t care about what people think about him but sometimes we all want to be told that we’re doing a good job and that someone is proud of us. Thank you, Stefan, for letting me into your life and you’re doing a hell of a good job.

Life

I write to deal with what I face everyday, whether it is happiness or pain. It’s my way of gathering my thoughts and trying to find solutions. Sometimes I use it as a way to remember Butterfly Moments since my memory has worsened due to medications.

For months, my Facebook newsfeed has had many disturbing posts and comments dealing with politics and race, politics and religion, politics and gender, politics and who we should love. You get the picture. I have a general rule for myself, in that I don’t discuss politics or religion. My religious choice is personal and I don’t need to post about it. I’ve also been the target of someone who said my illnesses could only be cured if I believed this one religion and while he has the right to his religion, that doesn’t give him the right to try to force me to believe. So to avoid unnecessary drama that would impact my health I refrain from certain subjects.

The last few months have been difficult for me health-wise so I avoided watching the news as much as possible also. That ended this past Sunday. Especially once the posts started spewing hatred and intolerance. Meeting hatred with hatred is not an answer because there are no easy answers. Intolerance and fear of others only causes more problems. Maybe one day there will be an answer.