The Scan Was Wrong

The night before surgery a little request to our surgeon...

Dr. Pappas,

Thank you again for everything you have done for Tony and believe it or not our family these past 5 years.  Its time for another miracle.  I will be praying for you and your team tomorrow.  If we have to do this every 5 years I'll take it.  Please do everything you can tomorrow to help Tony!!  Please save him again!!

All my best!!

These boys deserve a father to watch them grow up...report time was 8am.  A prayer with Pastor Sammy and his wife, a visit with my mom, and a last minute visit with Frank, Tony's childhood best friend, I kissed him good bye as they rolled him into surgery.  The tears were few this time.  I had been through this before, I knew what to do.  The best part...I wasn't alone this time.  I didn't have to watch the clock tick, tick, tick...instead I had conversation to keep me occupied.  I didn't have a quiet brain of thinking, instead I had prayer and hope rushing through my head and heart. 

Exactly 1 hour after surgery started, I went up to the desk and asked the lady (a familiar face from 5 years before) to call back to the OR and ask for an update.  She revealed they were continuing on with surgery, and making the incision now.  Happy and relieved, I walked back to the group and shared the good news.  Now it was another 2 hour wait.  What would be next?  Instead I decided to give the good news to Alec that surgery was continuing.  He must have been watching the clock because he called me just 10 min before for an update. :)

Three hours later, my pager went off.  Dr. Pappas was ready to see me.  I went into the room by myself and sat down on the couch.  I watched the clock, just as I started counting, Dr. Pappas walks in the door and tells me everything went well...He calming tells me what all he had to do, and what the cancer had done, and what was next.  He told me this was good news and I needed to get myself together because I would be the first person he would see when he woke up.  This is as good as it gets.

I walked back out to the group, trying to keep my emotions contained.  Happiness, Fear, Anxiety....all in one.

"Dr. Pappas did it again!!!" I announced

Knowing that any other surgeon would've closed Tony up, I was even more emotional.  Why all this if the tumor was only in his colon?  IT WASN'T.  When the doctor got in there, the tumor was growing through his spleen, pancreas, and colon...the scan was wrong.  :(  Thank God though because they continued with surgery.  First the colon in chunks to get back to the pancreas and spleen.  Bye Bye spleen, bye bye tail of pancreas and bye bye 23 cm of colon.

My love, my best friend, my soul mate has a long recovery ahead.  But he's still here, he will continue to fight.  I have some good news for my babies!!!

Thank God for answered prayers.

I'm Just As Scared

I've never really shard all the emotions that go through my heart during the journey.  The fear, the strength, the love, the tears, the joy, the sadness...and oh the ANGER.  Am i wrong for being upset and angry at cancer?  How DARE it come in and ruin my perfect little family?  How DARE it test my faith and my vows of sickness and health.  HOW DARE it pain my children and keep me from being the mom I've ALWAYS wanted to be?

I'm just as scared as them, I'm just scared as you, I'm afraid.  And sometimes...even though everyone is here for me, i feel alone.  I just need to cry sometimes, I need to scream at the top of my lungs but if I express or show a glimmer of fear who will be there for my children?  Who will dry their tears?  Who will show them that WE will be OK?  I have to love them all through each and every one of their emotions.  Whether its anger, frustration, fear, confusion, happiness, all of it...I, Mom, must love them through it.  AND oh its hard.

I'm scared that my fear will show, and leak out and they will lose faith.  I'm scared that I will join the young widow club.  I'm scared that the surgery won't be successful, I'm scared the chemo wont work, I'm scared of missing out on my young children's lives.  I FEAR THE UNKNOWN.

Dry your eyes your told.  Be strong for them.  You aren't alone.  He'll beat it.  Y'all got this.  I'm here for you.  Yet I just want to e a little girl where my parents tell me its going to be OK and it is.  I want my mom to be able to kiss his boo boo and all is healed.  It doesn't work like that.  I have to keep holding on and i have to stay strong for my warrior...my kids, his parents, everyone and deep down I'm just as scared of the rest of them.  Don't you get it?  GOD DO YOU HEAR ME??????  I'M SCARED!!!!!!!!!  Please Lord give me some courage to fight this fight with him.  Take away my children's fears and my fears...the tears are flowing ever so hard now....its the night before surgery...another life or death determinative surgery.

Tonight I will cry, I will hold him, I will hit my knees and pray.  YOU CAN'T HAVE HIM YET...Tonight its OK to be scared...as tomorrow I MUST BE STRONG!!!

My Little Boys Have Feelings Too

I wish my youngest Aydin and Ashton knew their daddy before he was sick.  I wish they knew his laugh, his smile, his jokes.  I wish they knew him when he coached...I mean really coached.  I wish they knew his love and gentleness.  Instead they only know a daddy who is sick.  A man in pain, short tempered.  A man who is scared just as much as them.

Tonight I see 2 small boys (6 and 9) terrified of having their daddy sick forever.  Two boys who wish they knew their daddy before cancer.  Two ANGRY boys that don't think any of this is fair.  Two boys lashing out at the world when they don't get their way...cause lets face it, the small things they don't get.

Tonight at Ashton's ball game, I watched Tony cheer Ashton on and get frustrated when he wouldn't listen to the littlest instruction.  I watched Tony's heart break and pain in his eyes.

I don't talk a lot about what the youngest are going through...but they are hurt.  They are sad, they are angry.  They just want their daddy....is that too much to ask?  So tonight, they will stay up late, currled up in daddy's arms and cry themselves to sleep.

The Visit - 4/2/2017

Just 1 month ago Feb 24, we were celebrating Tony's 5 year canversary at Luigi's.  My mom lifted her glass to a toast, and Tony thanked everyone for standing by him while he was nothing short of an ass hole some days...sorry Baby...but you were.  ha ha!!  Lots of hugs and smiles, periwinkle ribbons and love in the room.  It was also Aydin's 9th birthday.  The two share such a special day.  Tony made it, he's a miracle and blessed, and it was time to start living again.

The next day we were off to DC to lobby for stomach cancer research.  Tony only made it to half the meetings.  He was in so much pain, and nauseated, I finished the meetings with a different group of people.  We did however meet with Sen Burr and we thanked him for his letter to the NIH last year and had quite the nice visit.  Him and Tony talked more about football and lacross than they did stomach cancer...but boys will be boys. :D

A week later Tony and I went to meet his GI doc. Again great visit.  This time however, Tony asked for a colonoscopy as well as an endoscopy.  11 days later, he had his procedures, and we heard the possibility of the cancer being back.  That night was when Tony was in the hospital with the perforation.  The following week, we learn the cancer has returned and its straight to Duke.

Walking into Duke this time was all too familiar.  Except this time, there weren't smiles.  This time it was looks of sadness, tears, and shock.  No one could believe what they were reading.  No one could believe it was back...after 5 long years.  This time they didn't call our name.  Instead our nurse walked over to us, patted us on the back and asked, "Are you ready?" in a soft tone.  We got up, went into the room, and begun to share the events of the last month.

When our oncologist walked in he sounded up beat, but confused.  "I didn't want to see you guys again for this."  "Ugh." I started to tear up and he asked what was going on and symptoms.  I shared that this is why I was so damn frustrated at doctors blaming the other doctors.  That CLEARLY something was going on and was I ever right!!  Between the edema in his legs, the bile, not being able to use the bathroom, the extreme constipation, the pain in his left side...all were symptoms of the cancer, but being blamed by something else.

He ordered a PET scan which we had to get in the next couple of days.  I kindly told him he would be getting in this afternoon.  He chuckled and said, you can try...HELLO do you know who you are talking too?  Yes we got it that afternoon.

"What's the plan doc?" I asked?

"IF the PET scan shows its contained, I'm going ask for the tumor to be cut out."

"What about chemo?" I asked.

"I don't know Christy.  It didn't work the first time.  Which means it won't work now." the doctor replied.

"BUT IT GOT US 5 YEARS!!!!"  I reminded him

I really didn't like this plan.  Not one bit.  I emailed all our doctors on our medical advisory board from Debbie's Dream Foundation.  I was NOT going to sit around and wait, i had to have my second and third opinions in the balance.

"Are we stage IV now?" I just HAD to hear it from a doctor.  I mean I knew the answer, i just had to hear it.

"Christy, its back in a distant organ...yes.  But that does not effect treatment.  So it doesn't matter."

I liked that answer.  So here we are in the waiting game.  We go back to Duke in 4 days, if I can't get there earlier.  Tony's PET scan should be viewable now and we should know if surgery is an option for Tony.  I refuse to sit around while Tony has cancer inside of him doing whatever the hell it wants to do when I could be stomping my feet and pressing for surgery etc.  Besides, I already emailed his surgeon :D  just in case.  I've already received feedback from the DDF doctors that are on standby ready and willing to help.

In the meantime...I will continue to wait, and pray, and do things that keeps my mind busy.  I will kiss Tony a few extra times today, hug on him a little more, and add a few more things to the honey do list :D  After all, we still have to live and so does he!!

The Phone Call...No Words...

I kiss him every day, I hug him, I argue with him, I get mad when he doesn't fix it, why didn't he cook dinner?  Why didn't he hold me last night?  Why did he?  All of these thoughts run through your mind when you are told it may be the last time...All of it doesn't matter, just don't leave me...

That's just what happened at 1044am Monday morning when my phone rang.  It was Duke...The call I had been waiting for...the call I had dreaded.

Pathology: blah blah blah....metastasis from the patient's known gastric carcinoma...In English...Its back.  Tony's stomach cancer has returned after 5 years.  😭😭😭😭😭

How does this happen?  How do I keep listening to the doctor?  Why?  All the questions come running back. The questions from 5 years ago are ringing in my head.  And then it dawned on me.  Tony is now stage IV.  NOOOOOOOOOOOOOOOOOOOOOO.

After I handed Tony the phone, I heard him pacing in the family room.  Eager to know what the doctor is saying to him, I typed 2 words in the chat to my boss.  "Its Back," to help get my mind re-focused.  Tony with tears in his eyes handed me the phone.  I thanked Dr. Wolf for calling me and hung up the phone.  I went into the living room where Tony was.  We threw our arms around each other and cried.  We couldn't let go.  Our love can beat anything he told me.  I placed my hands on his face and made him PROMISE ME...PROMISE ME you will fight.  PROMISE ME you won't leave me.  PROMISE ME!!!

We started making phone calls and then went up to his parents’ house to break the new to them.  Tony stayed strong, as his mother cried.  I assured his mom and dad that we were fighting this NO MATTER WHAT!!  I could see tears in my father in laws eyes, but he was trying to hide them.  I gave them each a hug and we went home.

On the way home...I said to Tony...how do we tell the kids...again?  :(

This time we decided to tell 4 of the boys together.  Once they were all quiet. I began.

"There is no easy way to say this." I looked at Alec and Austin and I could see their eyes starting to water.  "Daddy's cancer is back."  Just as I had expected before I could finish my sentence, Alec ran upstairs.  Austin threw is face in his hands and pulled down his hat over his eyes.  Ashton and Aydin wrapped their arms around Tony as to never let him go.  Ashton was crying so hard.  The two little ones are old enough now to understand what cancer means.  Aydin even asked what stage he was.  I stood up and went to Austin and put my arms around him, while Tony held the little ones.  Alec came downstairs and went outside.  Before he did, I hugged him and told him WE WILL get through this...and then he left.  Tony and I swapped kids.  I went to the little ones and he went to Austin.  Austin collapsed in Tony's arms.  The 5 of us were just crying...sometimes, that's all you can do.  

I promised the boys that once I knew something, I would tell them and keep them posted.  Tony told the boys to get the guns and to go outside and shoot their frustration out... and so they did...except Aydin, he went into the office.  When I went in there, he was researching stomach cancer.  He wants answers, as we all do.  I just wish he didn't have to deal with this at the age of 9.

Regardless of the tears, we are a strong family and have been through a lot.  We have our ups and downs, but when crap hits the fan, we are stronger than ever.  And Monday...I had to be the strong one for 4 boys and their daddy.

Esophageal Perforation

Monday March 20...Tony had a dilation done in his esophagus and a colonoscopy.  Normally this is routine and we have a quick conversation with our GI doc and then its back home.  I got to meet a great couple who are new to the journey.  They were at Duke when we were.  This trip however...was different.

While Tony was waking up, our GI doc explained that there was an area of concern in Tony's large intestine?  How concerned?  He couldn't get the scope through his colon.  I was a little nervous, and then I heard 3 words that I had heard before.  Red, inflamed, and irritated.  Those three words I heard Jan 26, 2012 during Tony's endoscopy describing his stomach.  

The lump in my throat began to form, while my eyes were welling up with tears. "Biopsies were taken and sent stat." I heard, but I wanted answers NOW!!!  I took a deep breath and said thank you..knowing the next couple of days would be long.

When we got home, Tony was in pain like I had never seen him in pain before.  I assumed it was from the biopsies so I gave him his medicines and put him to bed.  After football practice I went home and Tony was asleep.  I fed the kids and they showered and too went to bed.  

Around 1030 Tony was awake.  This time he was calling for me in pain.  I ran to him.  He was white, sweaty, pale, and dry heaving.  It was horrible.  He started having difficulty breathing, so I called 911. 

After some tests at the ER, we learned that Tony had free air in his abdominal cavity.  This is very life threatening and usually requires emergency surgery.  The ER doctor contacted Duke immediatly.  Duke accepted a transfer from the local hospital to Duke.  From this point on the waiting game began.

THIRTY SIX HOURS LATER...Tony finally arrived at Duke.  Do I go into how I called Duke transport and BEGGED them to come get Tony because Cape Fear Valley was taking FOREVER!!!  Do I get into how CFV was only pumping Tony full of pain meds and antibiotics while waiting on Duke and he was not getting better?  If I heard, "I can't belive he's still stable" one more time, I was going to scream.

After a week in the hosptial at Duke, we were happy to learn that the leak in Tony's esophagus healed on its own.  This was an answered prayer because opening Tony back up was just way too risky of a surgery.  

Each day we were at Duke however, i asked for answers to pathology from his colonoscopy.  Unfortunatly every day was a no.  Still pending.  I'm sorry nothing yet.

Sunday March 26 Tony was finally discharged...and pathology?  No answers...but we got them the very next day...

Survivors Need Love Too

Well, be grateful you are alive.  ARE YOU SERIOUS?  Be grateful that you live with pain, be grateful you have to take medicine that alters your personality, be grateful you can eat at least 1 meal a day without it getting stuck, be grateful that you can make it to 2 out of 10 football games...YES be grateful.  The alternative is death.  The alternative is not being there for your children, because trust me there are children that would love to have their parents be at 1 of those 10 games. 




There is a secret, would you like to know?  If you are a survivor, you need love too.  You will get a cold and its not the cancer.  If you get the stomach flu, you'd like to be seen by a normal doctor not 50 specialists.  Woman still need pap smears, men still need prostate exams...why create a cure doc if you aren't going to bring the survivors back to reality?  My throat hurts doc, well you need to call your oncologist, surgeon, GI doc, and Urologist.  Ummmm my throat...not my $*@&.  Who are you kidding here?  Don't tell me I'm a miracle, I'm a survivor.  I'm a fighter, a warrior that fought the hardest battle like any solider or marine.  I get PTSD too...you know the smell of the chemo floor?  Yeah that triggers a memory.  Every time I undress and I see the scars and holes in my body, I get a flashback.  Please don't ask me to tell you about the side effects of chemo any more, I may just vomit on your floor, and PLEASE don't ask me to take another narcotic because the ones you gave me cause me to barley get out of bed.  I need you wife to tell me you still love me, I need you friend to come visit me, and I need you doc to tell me I WON the fight.  Don't come see me only when I'm in the hospital.  Come see me when im in my dark room, crying in depression because I can't provide for my family as I did before.  Don't only call me when my wife posts on fb that she's having a hard time with me and reaches out for help.  Come make me get out of bed, lets go play golf.  Don't be surprised when you see me, give me a hug.  Let me give you advise, my brain isn't broken, please know I'm still the man I was deep down inside, I just need you to help me find him again.


I don't want to be judged or fixed, I want to be loved.  I want the parade for I have RETURNED from the battle of a lifetime.  I want my life as it was before just like my family does.  I just want to be loved, survivors need love to.