Tony's oncologist called his surgeon and they discussed a plan. Tony was too have an upper and lower GI scope to determine next steps. But most likely Tony was going to need another surgery. :(
Between being told no more chemo, and Tony being so sick, we decided it was time to for Tony to see everyone. All of our friends and family came over for a great Sunday dinner taking photos and lifting Tony's spirits. Little did they know about his recent obstruction and possible surgery, and neither did the kids. Not only did Tony have an obstruction, he was recovering from aspiration pneumonia.
I have never been so scared...or so I thought. Monday I got his scopes scheduled and he was to start is prep Wed...but low and behold Tony walked into the kitchen Tuesday night and said, I think we need to go to the hospital. TONY NEVER SAYS THAT!!! HE HATES THE HOSPITAL. I paged his oncologist and she called back right away. She said to get Tony to the Duke ER ASAP. She was afraid his obstruction had worsened.
We got to Duke and went straight back to a room. XRAY's, labs etc. Tony's liver enzymes had skyrocketed. I mean 12 to 212, and pancreatic enzymes, 16 to 637. My heart was racing. The attending came in and I demanded a CT. Explained what we had learned just 4 days earlier. He had a CT and it showed the obstruction had in fact worsened. Doc came in and said, I paged the Surgeon on call to see if you're going straight to an OR or a room upstairs. UMMMMMM, Yeahhhh sooooo you are only paging HIS SURGEON. Not some resident on call. When I told him who Tony's surgeon was, the team came down right away. Because Tony was stable, and his surgeon would be arriving in 90 min, we felt it could wait.
I called my mom in tears. "Mom, I don't know what's going on. I'm so scared. Everything is a mess. His pancreas and liver and acting up. He's in so much pain mom." Worse, we STILL didn't know what was causing the obstruction. I just knew...it was causing major issues.
Good news, no surgery that night. going upstairs and waiting for consult with "THE MAN."
Surgery was scheduled for the following Friday, we were told, but he wasn't healthy enough. Tony was so malnourished on a scale from 18-45, Tony was a 7. :( That's when we learned that Tony was to start TPN and had to stay in the hospital until surgery. Then, we needed another 7-10 days for him to recover and get healthy. I had NO idea how to tell the little ones, I had NO idea how I was going to do it, I had NO idea about anything at this point.
After talking to Tony, we decided I need to go home for a couple of days and break the news in person. On the way home, my best friend called me. She was coming to help!!! For as long as we needed her too. She was my angel.
I pulled into the driveway, and surprised the boys...then I heard from Ashton, wait...where's daddy mommy? My heart sunk. I told them to dry off and come inside.
Daddy's going to be in the hospital for a little while. How long mommy? A couple more weeks baby. Aydin ran upstairs and Ashton started to cry. Austin fought his tears, and I could see he wasn't happy. I mean who would be right?
That night, I crawled into bed...and his side of the bed...was empty.
A week went by of me going back and forth to the hospital, it was time for surgery. Surgery was a success, but when I asked about the obstruction...he didn't have an answer for me. He told me pathology would tell us for sure. At this point we were to focus on nutrition and recovery...but me, I only cared about pathology. Was it cancer? or not?
Tony was doing great for the first couple of days and then he took a quick turn and not for the good. Tony began to sleep, and sleep, and sleep. Couldn't hold a conversation and when he was awake, he was staring. When it was time to eat, he had no desire. A couple of bites, and he wanted me to take the tray away. His color was no longer good, and I felt like I was losing him. Four days I said, something is wrong. Four days I said, we are missing something. Four days, I relived what I went through with my mother in law, watching her die.
Palliative care was called. I told him what was going on. He asked me what I needed to know. I said, I need to know if my husband is dying and no one is telling me, I blurted out with tears pouring down my face. I JUST NEEDED TO KNOW!!!! He put his hand on my hand and said, I don't think that is what is going on here. I really don't. I looked up and said, REALLY?? He said, No. I think this is medication, something we did, and we can fix. We went through every little medication, change add, removal etc over the past few days. I said, wait...they increased his pump on Monday. So we decided to decrease his pain pump, and turn off the rest of the meds. The next day, Tony came a little more alert, but still no appetite. I had palliative care paged and said, I don't understand. We had another great conversation about quality of life and family and how Tony just wants to go home. We miss our kids, our family, our home, we told him.
Just then we had some great visitors and we all went down to get lunch. While we were sitting there, I received an email from Tony's surgeon.
Good news
Intraoperative biopsies did not show cancer, just scar tissue.
Ted Pappas
I gasped for air. I couldn't believe it. I turned my phone and showed it to Tony. Then Frank, then April. WE WERE ALL SMILING. I forwarded the message to his oncologist. When I turned around, who did I see in the cafeteria? But his oncologist!!! I said, did you hear? Did you get my message? She had not, I shared the news and we did a big hug and celebrated right where we were standing. IT WAS THE BEST NEWS EVER!!!
I replied to his surgeon and said, OMG OMG OMG REALLY? Followed by,
"Does that mean we can go home now?" I asked
"Yes, Tomorrow." He replied
"With or without TPN?"
"Without"
"YES!!!!!!!!!!!!!!!" I responded. HAPPY DAY HAPPY DAY, THANK YOU THANK YOU THANK YOU!!!
SO WITHOUT FURTHER ADIEU...I AM HAPPY TO SHARE THAT AFTER 19 DAYS AT DUKE UNIVERSITY HOSPITAL, TONY LEONARD AND I WILL BE GOING HOME!!! :)
We are surprising our boys at their first football game tomorrow, so please don't spoil the surprise!!! PICTURES TO FOLLOW!!!
We can't thank you all enough for the INCREDIBLE support. The visitors, the gift cards, donations, meals. Its just been amazing. Tony's journey and recovery is far from over. He is still very malnourished, and weak, but we can continue recovering while improving nutrition at home. I cant wait to sleep in the same bed with my love.
With that said, to my fellow caregivers. Don't EVER stop advocating for your loved ones. Wen you feel something is wrong, stomp those feet. Follow your gut. Family time is important. Don't be afraid to accept and ask for help. Demand the best. And most importantly...BELIEVE IN GOD AND MIRACLES!!! THEY REALLY DO HAPPEN EVERY DAY!!!
