Life, Love, Christmas and Cancer

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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 26th. 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.

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Butterfly Moments and a Major Change

butterflyPhoto 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

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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.

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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

Hatred

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.

Spoonie Adventures

 

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A few days ago I was in the emergency room for bronchitis and a rapid heart rate. It was another of the many adventures I’ve had as a rare disease, cancer and chronic illness warrior. I’ve had almost three decades experience dealing with my rare diseases F.A.P. and desmoid tumors so I learned in my late teens to be my own advocate. Part of that is to inform the doctors and nurses about the idiosyncrasies of your body and the effects of your illness on it.

In my case I have very bad veins. They’re the types of veins that give nurses nightmares. After 29 years of IVs and blood draws, I know my veins like, well, the back of my hand. I can tell them where the best place for an IV is or if a vein is going to blow. Most nurses and technicians will listen because they don’t want to cause unintentional pain by multiple sticks. But there’s always that one arrogant one who thinks he knows my veins better than I do. And lucky me, I had one of those rare encounters this last time.

I had a perfectly good 20 gauge IV giving me fluids but this nurse wanted a larger one. The smaller the gauge number, the bigger the needle. My veins, the ones that haven’t fled at the sight of the hospital, are too small for an 18 but this nurse refused to listen and decided to try anyway because he never misses. I agreed to let him try because I get a bit contrary when my experience is discounted. I know my body and I know my veins.

Ten minutes of looking and he’s convinced he’s found the perfect vein so he tries it. No reaction from me because unfortunately I’m used to it. Barely a wince as he spends some time wriggling the needle and then flushing it because he’s sure he’s got it. Until a huge bruise starts forming where he blew the vein. And not a small bruise but one that is an irregular circle a little over an inch in diameter. Hmm, he decides to try one more time because he never misses and that must be a fluke.

Second IV try – I would describe it but simply read the previous paragraph because the same thing happens. Needle stick, no wince, wriggling and flushing, blown vein and another very large bruise. He blew two veins and I blew his perfect record for getting IVs started.

Now in addition to my bronchitis I have a very bruised arm but I also had something good come out of it. I had a nurse apologize because he dismissed what I said and my own experiences. A little pain was worth it because maybe next time he will listen to the patient and not cause unnecessary pain.

*Note: I have had hundreds of incredible and caring nurses with just a handful of unpleasant moments so this is not a reflection on all nurses.

Tired

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This poem by a writer friend describes well what I’ve gone through for the last few years. I live with two rare diseases, Familial Adenomatous Polyposis and desmoid tumors. FAP is an inherited colon cancer syndrome which means I had an almost 100% chance of colon cancer before the age of 40. I had my entire colon removed when I was just 15 because I had 1000’s of polyps and it was believed that some may have been early cancer. There were simply too many to biopsy so surgery it was. Followed by another surgery and another and a third…I lost count when I hit 20 surgeries. Some people with FAP have fairly normal lives but I’m one of the many who has complications. No two cases are the same.

FAP doesn’t just cause colorectal cancer. There’s also an increased risk of other cancers such as thyroid, small intestine, stomach, bile duct and a few others. We also have an increased risk of desmoid tumors, which aren’t cancerous but are sometimes aggressive and invasive. In my case, my abdominal desmoids are attached to my small intestine and cannot be surgically removed and my only option is chemotherapy. All that is also exacerbated by my uncontrollable hypothyroidism, chronic pain, back surgeries, arthritis, and other problems that seem to give birth to new problems.

So I live with the knowledge that my body is rebelling against itself and that there’s no longer anything my current doctors can do except give me pain medications.

There are some days that I wonder if I’ll be able to make it through one more pain filled day but there’s also days when, even though I hurt, I still have many Butterfly Moments of happiness. I’ve learned to find joy in the simplest things, like listening to rain fall while I’m enjoying some quiet reading time. The time I’m able to spend with my family has also become one of my most treasured moments. Talking to my friend Stefan and listening to his daughter are also special times for me. It gives me a chance to live vicariously through their experiences. These are what I call my Butterfly Moments. Moments that might not mean much to some people but for me, they are what I live for.

This poem by Stefan was also a Butterfly Moment, even though it made me cry. Or perhaps it was a Butterfly Moment because I cried. He understood exactly how I felt and managed to put it into words when I wasn’t able to and also because I wasn’t ready to deal with express it. I had tried to hold things together for so long and I was just worn out mentally, emotionally and physically. This was one of the turning points for me. A Moment when I decided that no matter how I tired I was, I would deal with whatever happened and live a life I wouldn’t regret.

So thank you, Stefan, for giving me the words to explain what I feel and helping to give me the strength to face life again.

 

Stefan Sheerin (Dark2nite), whose poem “Tired” is featured, is the writer behind Out of the Light, Away from the Darkness. He is a recovering addict and single father whose words and posts give hope to those of us trying to find our way in life. His Facebook page is Facebook and he can also be found on Instagram at Instagram.

Why I am an advocate

Recently I was asked why I’m an advocate for childhood cancer, early onset colorectal cancer and rare diseases. It happened on a day when I was exhausted from chronic pain and just wanted to sit there and do nothing.

I spend hours every day reading posts, articles and blogs about cancer, rare diseases, mental illness and anything else I might be able to share or write about on three Facebook pages, two Twitter accounts and two Instagram accounts. It’s not a job because I don’t get paid for my work on Whimsy the Blue Cancer Fairy, Performers Against Cancer or Dream of Hope. So the question was “Why do it?” My answer is because someone has to.

I’ll be 43 years old in two weeks and I’ve been battling Familial Adenomatous Polyposis since I was diagnosed in 1988. That’s two-thirds of my life filled with dozens of surgery, hundreds of hospital visits, cancer, chronic pain and the depression and PTSD that came along with it. But it’s also 28 years of being glad that I’m still alive due to stubbornness and some good doctors. It isn’t easy but I am still here. And now I have a voice.

I am an advocate because I am alive and I believe there’s always hope even in the darkest moments. I share my story because, just maybe, I can help one person find a bit of hope. It doesn’t matter if they’re fighting cancer, rare diseases, chronic illness or pain, mental illness or any type of abuse or addiction as long as they find comfort in something I post or write.

So I’m an advocate because we all need hope and it’s important to know we’re not alone and that someone cares.

Unbroken
She held her head high
for she would not allow
herself to be broken.
She is a warrior
and though pain tried
to shatter her she lifted
her wings in continued defiance.
Cracks mended with gold,
she became stronger in spirit.

Monica Marie Hernandez 3/23/2016