Tony Leonard – North Carolina

My name is Tony Leonard and I am still celebrating birthdays after my diagnosis of Linitis Plastica gastric cancer Feb 4, 2012. My journey has definitely not been an easy one. No one can truly prepare you for what’s ahead. No one can tell you how to live without a stomach, let alone how to eat without one. No one can tell you how to find a new normal, and no one seems to know much about stomach cancer period. Everything you read is bad and the more you research, the more scared you get. Let’s face it, most people don’t make it…but me, I decided this would be “too easy…let’s do it.”

It was my 39th birthday and my wife Christy made me go to the doctor for an annual physical. She of course scheduled our appointments on my birthday. Happy Birthday, right? I had also been feeling a little nauseous after I ate, but nothing major. My doctor referred me to a gastroenterologist to have a scoping done to make sure I didn’t have an ulcer. Due to the winter holidays I didn’t get in until December. Upper GI was scheduled for January. I changed my diet and the nausea went away, so I honestly didn’t think the scope was necessary…but again my wife made me go.

The morning of the endoscopy, the doctor came to us and pretty much gave me a clean bill of health. No ulcer, no hernia, no tumors nothing except a slight irritation but nothing to worry about. “I like to eat spicy foods,” I told the doctor. We laughed, shook hands, and I went home. A week later Christy called me at work and said the doctor wanted to see me Saturday morning at 8 am. She sounded a little worried, but you have to know my wife…she’s good at hiding her emotions (or so she thinks). The next day we went into the doctor’s office and he went down a list of symptoms. I of course had none of them. No nausea, no vomiting, no burning or pain when I ate, no blood in my stool, no history of cancer in my family that I knew of. The doctor just repeated, “You’re so young, you’re so young.” At this point I asked whether it was cancer. The doctor nodded and said yes. That Monday it was a repeat endoscopy, blood work and I had a CT the next day. I was referred to one of the top surgeons in the country at Duke University in Durham, NC. My wife demanded the best, and we got the best.

I was at Duke in less than 2 weeks, on President’s Day. The surgeon was great. He told me he was going to remove my entire stomach and connect my esophagus to my small intestine. “Too easy,” I told him and asked him when he wanted to do it. Well, little did I know that 3 days later was pre-op and that Friday was surgery…our son’s 4th birthday. See I have 5 boys and our youngest was a year and a half. I decided that I was going to beat this no matter what. Unfortunately, though, the surgery was the easy part.

After surgery, my pathology report showed I had 7 out of 10 positive lymph nodes and there was cancer that had grown up into my esophagus so they had to remove part of that during surgery. 2 weeks later I was meeting with a radiologist oncologist, chemo oncologists, and having more and more tests done. 25 rounds of chemoradiation (Xeloda/radiation) was horrible. The first 3 weeks weren’t too bad, but weeks 4 and 5 were horrible. The docs were nice and gave me a three week break before 3 rounds of EOX chemo. Someone forgot to tell me I was going to be on chemo 24/7 for what seemed like 6 months. Just the thought of those Xeloda pills make me sick to this day.

When all the treatment was over, it was time for scans. My scans were clean!!! I didn’t have cancer! It was over!! One problem doc, I can’t eat. See I had a feeding tube put in during surgery and that is how I ate during treatment. Food? No, thank you. Throwing up when you don’t have a stomach is like the worst dry heaving imaginable. So they had my esophagus dilated to help with the eating and food getting stuck. 2 months later I had a lymph node near my pancreas grow; this was scare #1. Luckily it went down 2 months later. 3 months later I was eating great and maintaining my weight. It was time to remove the feeding tube. I thought Iwas on the road to recovery.

Just as things were going great, it was time for scans. What did they find? There was sludge in my gallbladder. After an ultrasound, gallstones and sludge were confirmed and my gallbladder had to be removed. Too easy, right? WRONG!! My intestine had adhered to my liver so that needed to be fixed, and I was hospitalized a week after surgery. I lost forty pounds in a month and was getting weaker and weaker by the day. Christy started yelling at all my doctors until someone would listen. My oncologist brought me in right away. It was my heart. My pulse was in the 50s after walking around the oncology floor. I was admitted to the hospital again. 6 weeks later I had a cardiac ablation. So now I still can’t eat, my heart had to be fixed, docs can’t get my meds right, and I am just sick and in pain and can’t get out of bed.

Three weeks after the ablation, my feeding tube was put back in. When they got in there, they found that my intestine had wrapped around my esophagus and adhered to my abdominal wall. Sooo that was why I couldn’t eat. The surgeon of course fixed that, but I still had problems eating. Not only that, but my feeding tube was causing intussusception in my small bowel, and as a result they had to move it.

The good news is there was not cancer, but my nutrition and “plumbing” wasn’t working too well. Christy went back to my surgeon and begged for help. He started tests, brought in GI specialists, did more tests, and it was found I had diffused esophageal spasms. They are treating it with medication and soon I hope to be off my liquid diet. I went to a pain specialist, and he has helped a great deal. He advised me that without a stomach I don’t have acid to break down certain pills which is why my pain was so bad. Half of the medication I was on wasn’t absorbing properly. I’m grateful I have a pain doctor who understands my anatomy.

So you’re reading this you are probably thinking that this is scary stuff. The truth is that cancer can be scary; cancer can be ugly. But as long as you have a strong advocate fighting for you and a great support network you can beat it. To think my life would be how it was before cancer is unrealistic. I do, however, get to spend every day with my wife and children. Our youngest is almost 4, and our son whose birthday is on my surgery day, we share something special that no one can take from us. I get to watch my boys graduate from high school, and hold my granddaughter in my arms. I’m alive, and that is what matters. I’m not supposed to be, but I am. I am still learning my new normal and that is ok, because living is about life’s lessons, cancer or not. I’m a survivor! I’m part of a club that unfortunately few are a part of. We have a very special, unique membership. I encourage all of your stomach cancer patients out there to join.

My advice to you newly diagnosed patients is to have a great advocate – someone who can speak and fight for you when you can’t. Ask for help and don’t be afraid to ask questions and stomp your feet!