What The Hell Is A New Normal

Someone asked me once, what is your new normal?  Ha!!  Funny, all I could think of was, I'm married, I have 5 boys that drive me crazy, and a sick husband...that's nothing new.  Then I think back to our B C days...Before Cancer.  Life seemed so much easier back then.  Maybe its because we didn't have our boys in their prime teen years, or maybe its because our income was higher ya know before disability.  Tony and I did everything and went everywhere together.



Then in dawned on me...I didn't feel like a single parent then.  I catch myself now trying to handle everything by myself with the boys.  I don't like Tony to get frustrated because that sure as hell comes easier than it used to.  I've learned to accept that "Mother's Day," is just another day, and my birthday is a celebration that I too made it another year without checking myself into an insane asylum...trust me I've thought about it.  I find myself taking on more now than I ever did before and I have no one to help me.  I try to keep the day to day operations a smooth as possible for the kids without them seeing the stress or the tears, but as the days go by, it gets harder and harder.


When people hear sick or cancer, immediately attention goes to the patient...AS IT SHOULD, but those the family members are often forgot about.  The kids' friends don't understand, single parents don't understand, only other caregivers.  The problem is the other caregivers are so busy caring for their loved ones, who has time to talk.  Oh and when we do talk, we sure as hell aren't talking about us, we are talking about our warriors.  YOU KNOW WHAT I AM TALKING ABOUT.  And please, don't ask how I am doing, because I am tired of crying.  The shampoo got in my eyes, that's why they're red only works so often.


The new normal.  HA, well put one foot in front of the other and do the best you can.  If McDonalds is dinner don't judge me I promise I know how to cook.  If my kids clothes aren't the latest fashion, don't judge them, they may still be in the dirty clothes.  If we are having a bad day, there may not be a  reason and I'm allowed to have them, and if I'm tired, please just let me rest.  The new normal...its now the norm.

So Simple Yet So Difficult

Endoscopy with biopsies and Jtube placement.  Must be the easiest "surgery" out there.  Especially for what Tony has been going through. 

"How long will it take Doc?" I asked

"No more than 45 min.  We'll see you in about an hour and a half."  He replied.

Tick, tick, tick, tick, tick...1 hour, 2 hours, 3 hours....something's wrong.

Tick, tick, tick....buzzzzzzzzzz.  pager goes off  FINALLY 3 1/2 hours later the doctor is ready to see me.  His gallbladder didn't even take that long.

"Well everything went according to plan, I looked around we didn't see any cancer which is great...but we did find something."

They sure did...Tony's intestine was wrapped around his esophagus and had adhered to his abdominal wall!!!!!!!  Well I'll be I KNEW SOMETHING WAS WRONG.  Yeah so they had to cut and pull and re-stitch and ugh I just...can we just have a normal day?

Tony woke up from surgery in a ridiculous amount of pain and unfortunately it never went away.  His feeding tube wasn't like the one before.  He said the tugging was horrible and it felt like someone was shocking his insides.

A month later we were in the ER having his tube removed why you ask???...intussusception in his small bowel.  Yeah while one doc said it was nothing to worry about, his oncologist said, that's what's causing your pain my friend.  Either way, though Tony had his energy back, the pain was just too much to bare.  He couldn't walk, sit, stand, lay, it was just horrible.

Needless to say the pain subsided when the tube came out, and then it was what seemed like back to square one.  So this time, I went to THE BOSS MAN...yep back to Dr. Pappas.

Cardiac Ablation 1/3/2014

After Thanksgiving Tony went and had his heart halter put on.  The results were what we thought.  PVCs...Pre-Ventricular Contractions.  Well we can all have these, but when you are having 30 a min, or 1 every 4th and 5th beat...it needs to be fixed.

We met with the heart electo doctor and he explained how he would do the procedure.  A catheter up his groin to his heart.  They locate the area of the heart that is damaged, and kill it pretty much.  Too easy right?  I think the hardest part was making Tony lay perfectly still for 4 hours after the procedure.

My friend Erin kept all the kids for us the day and weekend of the ablation so Tony could rest.  We truly do have the best friends and support in the world...when I remember to ask for it.  LOL

Well now Tony's ticker is fixed...its time for the next surgery, Endoscopy with biopsies and JTube placement.

St. Johns!!! :)

Here we are in St. Johns.  What a great time we had...or did we.  Of course we did, but Tony was getting sicker by the day.  He had no energy, everything he ate made him sick, and he was throwing up when we snorkeled.  When we got back to North Carolina, Tony could barley get out of bed.  His heart was acting funky, he couldn't stay awake, I started screaming at his doctors until someone would listen.

Tony's oncologist told me to bring him in the next day.  His nurse told me they had a bed waiting for him.  Good thing.  His doctor is listening to his heart and got a serious look on his face.  "C'mon Tony, lets go for a walk." and he walked Tony around the cancer floor.  After that walk he hooked him up to the heart monitor and Tony's pulse was in the 40s.  Normally, its in the 90's/100's.  Tony was admitted right away.

They scanned him from head to toe.  Atrophy of his organs from the radiation was apparent now, but no cancer!!! :)  His heart though...needed a fixin.' 

During all of this my 17 year old's knee got injured during the playoffs and he needed an MRI.  So while those results were coming in, Tony was in the hospital.

On the Tuesday before Thanksgiving, Tony was discharged and we came home.  Enough time to get Tony settled, showered and off to the orthopedics for Alec's MRI results.  Guess who needs surgery???  Yep.  Alec had a 90% meniscus tear in his knee and surgery was scheduled for.......tomorrow.  Yep the very next day Alec had surgery.  So now I have big baby #1 and big baby #2 out for the count, and Thanksgiving dinner to cook.  Happy joy....NOT

Really His Gallbladder?

I haven't written in a while mainly because I just didn't have time.  Between Tony having 4 more surgeries, football, soccer, Alec having knee surgery, baseball, and well life...I've been a pretty busy mom.  LOL

It was time for September scans and Tony had this funky pain in his belly.  Scans show sludge in his gallbladder.  REALLY of all things his gallbladder.  Should've removed it during his TG.  By the time his ultrasound was done it was full of stones.  Surgery was scheduled for Sept 28th.  It was a Thursday.  When they got in there however he had adhesions between his liver and intestine so they separated that...HA  The docs make it sound soooo easy.  Well I took Tony home and his butt was back in the hospital admitted a week later.  His liver enzymes were elevated and it appeared he had a blockage in his bile duct.  OF COURSE HE DID...because Tony can't have a simple surgery without complications.  The good news the blockage cleared on its own and Tony didn't need another surgery.  Well while he was in the hospital his doctor noticed some abnormal heart beats...little did we know there would be another issue down the road.

Tony's A Survivor - His story

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 39^th 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 4^th 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.

Decreased In Size

Decreased In Size...Decreased In Size...Decreased In Size.  Music to my ears.  Those three words I kept reading over and over again.  Each time my heart would beat faster, the words more blurry, and  tears of joy ran down my face.  It was going to be a good day!!!

The past two months have been stressful to say the least.  I mean one minute you're wondering if the cancer is back and multiplying like crazy, and the next you are just grateful to have each other for one more day.  Sometimes you just sit quietly and pretend not to know what the other is thinking, and other times you cry and fuss about the what ifs.  Lets face it, we are just normal.

Living life scan to scan sucks, but the truth is the key word there is living.  I would rather live like this for the rest of my life than the alternative.  Tony is a fighter and no matter what, he says he will beat this SOB..."I don't have time for cancer."