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 eat. 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.” My name is Tony Leonard and I am a still
celebrating birthdays after my diagnosis of Linitis Plastica, gastric cancer
Feb 4, 2012.
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 scope 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.
A slight irritation but nothing to worry about. “I like to eat spicy foods” I told the
doctor. We laughed, shook hands, and it
was back 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 what it was Cancer? The doctor
nodded and said yes. That Monday it was
a repeat endoscopy, blood work and a CT the next day. I was referred to one of the top surgeons in
the country at Duke in Durham NC. My
wife demanded the best, and we got the best.
I got to Duke in less than 2 weeks, 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 my esophagus so
they had to remove part of that during surgery.
2 weeks later I was meeting with radiologist oncologists, 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 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? Yeah 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, scare 1. Luckily
it went down 2 months later. 3 months
later I was eating great, and maintaining my weight. Time to remove the feeding tube. I was on the road to recovery…was.
Just as things were going great, it was time for scans. What do they find? 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 to 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’s why I couldn’t
eat…not. The surgeon of course fixed
that, but I still had problems eating.
Not only that 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
“pluming” wasn’t working to well.
Christy went back to my surgeon and begged for help. He started tests, brought in GI specialists,
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 doc that
understands my anatomy.
So you’re reading this probably going wow…scary stuff. The truth is 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, have a great
advocate. Someone that 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.
