Frank Ciccia's TC story

In late September of 1995, I had begun to experience some pain in my left arm and shoulder. I thought it was simply muscular pain from running so much. I was preparing to run in my first race and was running about six miles a day. I had lost quite a bit of weight. At the time I thought was from running so much. The race was on a Sunday. I was 1.4 miles into the race, when all of the sudden I felt something odd happen. I had the sensation as though a rubber band had snapped in my head. I became extremely dizzy and could barely walk. I ended up walking the remainder of the race. I thought the dizziness would go away, but it didn't. I went to the emergency room later that day, and they told me I probably had an inner ear infection. I went home with an antibiotic - and still dizzy.

The next day, the dizziness and the pain in my left arm were getting worse. I held off going to the emergency room that day, but on the following day (Tuesday) I woke up with my left arm the color purple and feeling like it weighed a ton. I called my doctors office and they told me to quickly get to the nearest emergency room. There was a hospital just down the street. I was there within five minutes.

I was quickly admitted in the emergency room. Unfortunately, I had to wait for a doctor because they were just about to announce the O.J. Simpson verdict. Everyone seems to remember where he or she was when the verdict was announced. I was on a gurney in the ER.

The ER doctors and nurses examined me and thought I possibly had a blood clot. However, they needed to do further tests. I was admitted to a hospital bed.

On Wednesday - October 3, 1995 - after a CT scan and a chest x-ray, they found that I had a large mass in the anterior mediastinal portion of my chest. They needed to remove it and determine whether it was benign or malignant. The surgery was originally scheduled for Friday October 5th, but got postponed until Monday October 8th.

I had never had any kind of surgery before. I have never even had my tonsils out. I thought I was the healthiest I had ever been in my life. Just a few years prior I was 235 lbs. and I am only 5'8" tall. I never expected anything like this. Waiting several days for the surgery was excruciating. I had some scary moments in my life, but nothing compared to this.

The staff at the hospital asked me whom I would like to perform the surgery. I paused for about a minute and then I told them - "I had never had a large tumor removed from my chest before, can you help me out here?" I never heard the word "Oncologist", let alone "surgical oncologist". My doctor was no help - I never even saw him when I was ill. They put me in touch with a cardio-thoracic surgeon.

On Monday morning I had the surgery. They needed to open up my chest and remove the large tumor mass. The surgeon woke me up while I was still in the operating room and his exact words to me were "Frank - I am sorry - it is malignant - there is no hope!" I wasn't sure if that was real or I was still unconscious and having a bad nightmare.

I woke up in the recovery room and a short time later was taken back to my room. My entire family were standing around my bed - all seven brothers and sister, and my parents. I remember saying - "he said it was malignant". I wanted them to tell me - I heard him incorrectly, but they all just started crying.

The official diagnosis was Mixed Germ Cell Mediastinal Tumor, composed of endodermal sinus tumor (yolk sac), embryonal carcinoma, and seminoma. They told me it was testicular in nature. I had never heard of it before. The surgeon put me in touch with an oncologist. He came to see me later that day. He told me I probably only had about three months, but with chemotherapy, I might be able to live six to twelve months. I should go home and start to get my affairs in order. I was 33 years old.

My whole world had been shattered. I kept thinking about how there was so many things that I still had not done, yet like go to Italy, have a significant relationship, or leave my mark on this world. Suddenly all of the "things" I had accumulated or collected were simply junk. I no longer had a need for them and they meant little to anyone else. I was discharged from the hospital and given three weeks to recover from the surgery before beginning chemo.

I began one round of chemotherapy with this oncologist. He gave me a five-day dose of cisplatin, bleomycin, and VP-16. I became neutropenic and was hospitalized. While in the hospital recovering - I looked out the window of my hospital room and I saw a large group of runners, running in an annual race in Buffalo called - the "Turkey Trot". Right at that moment, something inside of me told me I have to fight this cancer harder and begin to take control of my wellness. Later that day I told that oncologist that I was going to get a second opinion and he agreed that I should.

One of my closest friends is a nurse and her name is Nancy. Once I was released from the hospital, she took me to Roswell Park to see a doctor named Ellis Levine. He was the first person who told me I have a chance. He said that I had a 50% chance of beating the cancer, but that my body was going to be put through hell. I was going to need an extensive and severe series of chemotherapy treatments. I said let's do it.

Over the next several months I received many more chemotherapy sessions. I can't remember if it was six or seven more rounds. I would be admitted into the hospital and receive 5 days of chemotherapy, and nine days off. I had to have a mediport put in my chest because my veins were no longer any good. Twice I became neutropenic and had to delay my chemo for a few extra days.

I had two different types of cancer "cocktails". They would rotate my chemotherapy mixtures. Some of the drugs I remember having were: cisplatin, bleomycin, etoposide, cytoxin, and about four or five others, but cannot recall their names.

I lost all my hair (every hair on my body), got down to 130lbs., and I could only walk with assistance. I fainted quite a bit, vomited often (the anti-nausea meds no longer helped), I constantly had a runny and bloody nose, and my hearing and sense of smell were extremely sensitive. The worst part was that I missed my life. I was constantly sick and I missed so many things I took for granted. I missed not being sick.

My parents, brothers and sisters, and many friends were so supportive. What kept me going were their words of encouragement, their calls to see how I was doing, and their visits on the few days I would be "up to it".

On March 1, 1996, I had finished my planned chemotherapy treatment, and it was time to do my first CT scan since they initially found the cancer. The most ideal scenario was that the cancer was gone. However, my doctor told me not to get my hopes up. I may have to go through more surgery and possibly more chemotherapy.

I got the results of the CT scan within a half hour. That is one of the many things I love about Roswell Park - I never need to wait days for my CT scan or chest x-ray results.

Dr. Levine and my nurse practitioner came into my treatment room and told me that my CT scan was clear - no cancer. I would need to wait a week for tumor marker results, but those proved to be normal. I was so happy - I felt reborn. I still thank God for giving me the gift of life back. I have been cancer free since then. I have check ups every six months.

I really do believe cancer was a wake up call for me. I still have work to do here on this earth. I have given much of my time to cancer related causes - especially Gilda's Club. I just became a board member for a new affiliate of Gilda's Club that is beginning to get organized here in Western New York.

I feel very lucky, fortunate, and blessed. My story is one of hope. However, I have had several friends who have not survived cancer. I know the cancer may come back at any moment - but I do not let the chance of that run my life.

Frank Ciccia


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