Ed Pariso's Cancer Story
In February of 2017, I was diagnosed with a very rare sarcoma cancer. 2 large masses, the size of cantaloupes, were found in my lower abdomen and pelvic area.
Myself and Betty (my wife) were in a daze, but we had to fight this head on. A few weeks later, I was going through 5 weeks of radiation every day. The radiation was tough, because everything in my pelvic area had 3rd degree burns. I lost 50 pounds, I could barely eat because of the nausea, but Betty kept pushing me. Some days I could barely get out of bed, but somehow I made it to the gym 3 times a week the entire 5 weeks of radiation. I would just follow Betty around and do light weights, but I was determined to keep fighting through all of this.
During this time, we had our grandsons, James & Logan 3 times a week. Fighting through the pain, I would sit in the recliner and draw or play games with the boys. Betty of course, tried to keep life as normal as possible.
Through all this, we still had 4 Expos to plan. We own a business in which we put on Expos & Tradeshows for a living. I am so thankful for my daughter Lacye, daughter-in-law Mallory, my business partner Scott, our show manager Steve and of course Betty, for keeping the business alive. Four days after the final day of radiation, at my worst, in regards to radiation side effects, I got on a plane and made it to our Expo in Charlotte. I laid in bed at the hotel most of the day in pain, but was able to make it over to the expo to give out the trophies to winners in some of our sports competitions. It was a goal Betty and I had discussed many times, not sure if I would be able to attend. I also made it to another one of our fitness shows, and our Orlando Expo. I just kept fighting and moving forward. I was determined as best as I could not to let cancer tell me what I could do.
Three weeks later, in severe pain, I road my Harley to the top of Mt Scott in Oklahoma. I got off my bike, hugged Betty and through tears I told her “we made it”. It was a beautiful day, and a triumphant achievement I will never forget.
Removing The Masses.
Surgery was scheduled for Monday June 5th, 2017. Sunday, one day prior to surgery, we spent with our kids and grandsons and family at one of our favorite places, Dave & Busters.
Surgery was 10 hours. It was a life changing surgery. UTSW Hospital and the entire surgery team, successfully removed the two giant cancer masses that weighed over 4 pounds each. They also removed my bladder, prostate, part of my colon, rectum and anus. I now have a permanent urostomy bag and colostomy bag. Betty never left my side in the hospital and nothing is more intimate and loving than your wife taking care of you. She had to learn to change and adjust our lives with the bags that are now part of me.
Dave & Buster
These bags I wear, saved my life, I decided to name both bags "Dave & Buster”, in honor of how much fun I has with my kids and grandsons that day. You can look down and cry or get mad. I decided they would make me smile each time I saw them. When I finally got home, I walked through the door to a huge banner and balloons "Welcome Home Papa and "Dave & Buster". When I saw the sign, I cried, I have the most loving kids in the world.
Someone once said. "We are more vulnerable than we ever thought, but stronger than we ever imagine”.
My faith got me through this and will continue.
Time To Heal
I’m finally home from the hospital, I now weigh 142 pounds. I weighed 210 pounds just a few months ago. I caught a glimpse of myself in the mirror, I definitely look like a cancer patient.
A week in the hospital, finally get home, and we are 5 days out from our Dallas Expo, and I am determined to show up. Thursday evening, 2 days prior to the event, when Betty should be finalizing the entries and tickets sales, I ended up in the ER with pain. I ended up with a complication of both stoma ports not working properly. Eight hours later, I get released from the ER and we head back home very late that night.
The next morning on Friday, Betty packs up everything she needs in the car for the Dallas Expo, including me in a wheelchair. We check into the event hotel, and she helps me get comfortable in our room. With all the medical supplies I had to bring, it looks like a hospital room. Not sure how Betty was able to do everything in preparation for the EXPO, but she always said she was like a duck on the water, calm on the surface, but the feet under the water were frantically paddling to keep everything upright. I watched this amazing woman carry the load, as the weight and stress of everything was squarely on her shoulders. I always say squeeze someone, and see what comes out, with Betty it’s who I feel in love with just magnified by 10.
I have a wound vac machine that I have to carry around for a month, that attaches to where the sun doesn’t shine. The wound vac helps close the incision where my anus was removed. So, for 4 weeks I have to carry this machine around. Each week the wound vac nurse has to come to the house to change the surgical dressing and tape …ouch. Not a pleasant encounter. Saturday morning…SHOW TIME! That morning Betty helps me get dressed in my new jacket, size 38. The size 46 coat I wore just months ago seemed destined for goodwill. I saw so many friends that hug me and told me of their own stories of how cancer has affected their own family. With the help, I make it up on the main stage, wound vac in hand and my loving family by my side for the trophy round.
Ten days after surgery, I am back in the gym, with my wound vac by my side. For people like myself that love to work out, it was a goal that I kept firmly in place to keep me moving forward. After living off Gatorade and crackers for so long during radiation and nausea, my appetite is coming back. After 40 years of weight training, I know my body, and I know what to eat to be healthy and what to eat to gain good quality muscle. A few weeks in the gym and my weight starts to creep up. I am now 180 pounds and starting to feel good. Betty and I are back doing our powerwalking cardio outside.
One month later, the wound vac gets removed and we fly back to Betty’s hometown of Kentucky with the grandkids. At the airport I get stopped by TSA. When I look back at the body scanner. the image reveals my entire groin area is highlighted in yellow, where I had been radiated. Radiation and how it effects the human body can remain for years. The TSA staff ask me to go into a private room. I lift my shirt and show them Dave & Buster. They both looked kind of shocked. Having both a colostomy and urostomy is extremely rare.
After searching the internet for more info about my stomas, I still can’t find anyone that has both. Betty and I get educated really fast about how to care for the new me. The stoma is what is called the ports. I remember standing in a room at UTSW Hospital 3 days prior to the surgery, as Adora the stoma nurse took a permanent marker and made 2 circles on each side of my belly button. This is where each of my stoma ports would now exit my body. I didn’t say much in the room, but when I got in the car I cried with Betty. I think we thought with radiation, maybe the masses would shrink, or disappear, and I would dodge this, or maybe just have 1 stoma. Those permanent marks made everything set in that this was going to happen It them set in that this was really going to happen.
Betty and I have come so far on how to care a live with the bags. What originally took 45 minutes our first time, now takes us less than 5 minutes. We did spend a lot of time investigating many of the new products, and some of the new things you can order to make things so easy. With cancer you have to become the advocate of yourself.
Five weeks later, I am back on my Harley riding the back-county roads. My training continues and I am now back up to 210 pounds. I’m am back swimming in the pool with James & Logan and my life is back to normal. It is a surgery that forever changed my life but did not change the way I live my life. This very rare and dangerous cancer, and the surgery I had was what you call a Hail Mary operation. It took a very talented group of surgeons to give me my life back. I want to thank UTSW Hospital, Head Surgeon Dr Mansour, all my Doctors and my sweet stoma nurse Adora. To my family Doctor, Dr Page, thank you for all your support.
I prayed for strength every night. I was born again 40 years ago, and my Christian faith was the foundation of all my strength & fight.
So, Dave & Buster are always with me, and I will always look down with a smile.
Donations For A Special Day
Betty and I have started “The Ed & Betty Pariso Cancer Charity”.
We want to help family members that are dealing with cancer, to have a special time, and put the thoughts of cancer aside to have a fun special day. We plan on helping financially those we can that are going through cancer, to fund a special day or fun event,
so families can enjoy something special together. Sometimes the finances are the hardest hit during the grind of radiation or chemo.
Our day at Dave & Busters, will always remain with me in so many ways, and together with your help, we can give a fun day for families during the time when they need it the most.
We appreciate any financial support.
Ed & Betty Pariso