Shelly's Story
"All I kept thinking was, I’m 48 years old, and my mom died of liver cancer at 48!"
My name is Shelly Smith. I am the wife of 28 years to Larry, a mom to Jaclyn, Larry and Samantha and a Stage IV appendix cancer survivor. When you get diagnosed with cancer you have three choices. Let it define you, let it destroy you or let it strengthen you. I chose to let it strengthen me. My story began on December 31, 2015. I was having horrible pain in my lower right abdomen. We went to the emergency room where they did a CT scan which showed my appendix was inflamed. They advised me to go by ambulance right away to have my appendix out. I met the surgeon and at midnight my appendix was taken out. Ten days later I was already back at work and went for my check up to the surgeon’s office. The doctor came in and asked how I was feeling, I told him a little sore but other then that I was fine. He then began to tell me they found a tumor in my appendix. My diagnosis was appendiceal adenocarcinoma with ex goblet cell carcinoid, Stage III appendix cancer the ex goblet cell he emphasized was very aggressive and I needed to see someone as soon as possible. I remember saying to him what’s the big deal my appendix is taken out, you don’t even need one? The doctor said not when there is a tumor in your appendix. He then proceeded to tell me how they would be taking out 12” of my colon to get to my lymph nodes to biopsy.
" I remember thinking am I ever going to feel like me again? I felt pretty broken."
I felt like my head was under water not hearing anything he was saying. All I kept thinking was, I’m 48 years old, my mom died of liver cancer at 48, my dad died 16 years after that of pancreatic cancer, what is happening? I asked if he could please show me pictures of what he was talking about. He took me in another room and there were pictures of what they would be doing. I understood it better after seeing it. We went back into the room and he gave me two Oncologist names and two Surgical Oncologist names to make appointments as soon as I could. He kept stressing that I needed to do it soon, so he was scaring the heck out of me! I remember asking if he knew I had this tumor, why didn’t you tell me to bring someone with me for this appointment? He and the nurse just kept saying they were sorry and that they should of told me.
I left and called my husband right away crying hysterically on my way to the car. Larry wanted me to meet him at home so we could talk about this. I told him I was going back to work I needed to keep busy and get a plan together. If I went home to meet him we probably would cry all afternoon before the kids got home from school and that would not be productive. I went back to work and told a few of the girls I work with and they started researching everything for me. They were all incredible in helping me. I made my appointment with the Oncologist and Larry went with me the following week. The oncologist told me what they would be doing sounded similar to what the other surgeon told me. The oncologist did say that if they did find any tumors I would be looking at taking chemo pills for probably 6-12 months.
Next, I needed to see the surgical oncologist. After talking to Dr. Joumaa, one of the cardiologists I work for, he told me about one of his friends, an oncologist at St. John’s, Dr. Kafri. I made an appointment with him and he told me I needed to get moving quickly, this was nothing to wait on. Out of the two Oncologists we both liked how Dr. Kafri explained everything in detail. He said I needed to make an appointment today with Dr. Richard Berri who does the Hyperthermic Intraperitoneal Chemotherapy (HIPEC) treatment after tumors are removed in the abdomen. He ordered a bunch of tests, CT’s, MRI’s and lab work. I made my appointment with Dr. Berri for February 1, 2016. His office sent out a packet to my house explaining everything about their HIPEC program along with videos of the procedure, patient testimony, his office staff and surgical team. My husband and I were looking up everything and it definitely sounded like this was the best option, especially for appendix cancer patients.
Appendix cancer affects 1 in 1500 people around the world each year. Not a lot of research going on for us. When I was looking into HIPEC it looked as if some patients were living past 17 years when initially the survival for appendix cancer was 5 years and under. After meeting Dr. Berri and Anna, I knew we made the right decision. They told us he would start with a laparoscopy and if he didn’t see any tumors, that would be it. If he did, then they would proceed with cytoreductive surgery and HIPEC. I had to have more tests done before the surgery which was scheduled for February 24, 2016. All of my tests that I had pre-surgery didn’t indicate any tumors in my abdomen. However, when Dr. Berri did the laparoscopy, it showed I had tumors in my abdomen. An incision was made from my xyphoid to my suprapubic bone. My surgery consisted of removing 12” of my colon, biopsy of 37 lymph nodes, removing tumors off my diaphragm, removing both ovaries, one had tumors, removing my peritoneal lining which had tumors and my omentum. Then the HIPEC was administered in my abdomen for 90 minutes. After that they opened me back up checking to make sure there were no more tumors, irrigated my abdomen and closed me back up.
I was off to ICU for 3 days. They drained 1 liter of fluid off my lung on the second day.The day after that I was transferred to 6 North, known as the cancer floor. I stayed there for the next 6 days.They kept telling me how important it was to get up and walk. So everyday I did and everyday I went more and more even though I was pushing a wheelchair with my catheter in and IV hanging along with that an oh so comfortable NG tube sticking out of my nose haha! What a sight! I’m glad there wasn’t any small children around, I would have scared the crap out of them! Everyday was an improvement. Still not feeling all that great but it was progress. On the 8th day my NG tube came out and I got to eat and drink normal food.The next day I went home happily but still feeling miserable.
Post Op my diagnosis was Appendiceal Adenocarcinoma with ex goblet cell carcinoid and peritoneal carcinomatosis. I knew this was a big surgery going into it but thought I was going to bounce back to my old self pretty quick. That didn’t really happen as quick as I hoped. On March 12, 2016 I was back in the hospital for bilateral pulmonary embolisms. I was short of breath and couldn’t lie down on either side or my back. That was another 5 days in the hospital. Apparently, I’m one of the one percent allergic to Heparin (blood thinner). Wow lucky me 1/1500 get appendix cancer and 1% to get Heparin allergy, I should really play the lottery! I was sent home with blood thinner injections for 30 days then went on coumadin. After 6 months I went to aspirin and now that is all I need to take.
This surgery is pretty intense and can really knock you down emotionally and physically. I remember thinking am I ever going to feel like me again? I felt pretty broken. Then I started feeling stronger and was walking more each day. Little things that I couldn’t do around the house I started to do. Before I knew it, I was back to taking care of my family and went back to work on April 6, 2016.
Here it is 20 months later and I’m feeling great! I have a lot to be thankful for. It made me think of how fortunate I was to have worked for a doctor who referred me to Dr. Berri and his amazing team. I have met some of the most kind, generous and wonderful people throughout this experience from first being diagnosed, to our last 5K walk fundraiser on April 22, 2017. Then I thought, what about the ones who don’t have a connection? How will they get the great care and treatment that I did? What about the people who don’t have family or friends around to talk to for support while going through all of this? I can’t imagine doing this alone. We wanted to give patients support and educate them about HIPEC. We hope the information we provided will benefit those facing the many challenges that cancer brings into our lives.
