John's TC Story

"Do what you can, with what you have, where you are." Theodore Roosevelt

LIKE FATHER LIKE SON

My nightmare began in June 1995 when I noticed my left testicle was slightly larger then the other. In my mind I was thinking, big deal right? I had enough on my plate. I was running my father's convenience store and taking him back and forth to radiation treatments as he had recently been diagnosed with lung cancer. Although, I was beginning to have serious back pain along with the swelling, I took a couple of Advil and went about my way. It was hard enough trying to run a high maintenance business and deal with the inevitable death of my father.

Some time previous, the stress and demands of the family business had taken its toll on my relationship with my dad. Up until his diagnosis, we were barely speaking to one another. A painful divide, since he and I had been practically best friends as well as father and son. We shared the same interests in sports and played lots of golf together. I felt we needed to be friends again and that had priority over my pain.

Dad handled the radiation well and chemotherapy was next. His prognosis, however, did not look promising. My mother asked me if I would move home to assist her with dad's care; I agreed. By July she and I had come to the decision to sell the store to relieve the building family tensions and financial strains.

In October, my health really went downhill. I went from taking a few Advil to an entire bottle for the pain. Eventually, that dosage was no longer helping. I popped any pain meds I could get my hands on. (legally of course!) I'd lost 25 lbs and my left testicle had gotten larger. My pelvic area was swollen and my stomach upset quite often. Through all of this my dad and I came to an unspoken truce. I was so afraid of losing him. You see, he understood me like no other and during those days I had lived a very lonely existence due to my own self-consumption. Knowing my father was dying and I was living an empty life, gave me my own death wish. I never had the guts to actually do it, and I believe I allowed my physical pain to elevate as a desire to cease existing. My pain was so excruciating physically that at times, I would have to crawl from my room to the bathroom. I would cry in agony as I tried to, unsuccessfully have a bowel movement, or sit in near scalding water to ease my back ache.

By December I weighed 108lbs on a 5'7 1/2 frame, my skin was green and discolored and I was successfully killing myself. You may ask-how could my surrounding family not notice? I fibbed generally and told them it was a hernia problem. I tend to think with dad's health as it was, everyone was in denial that something was seriously wrong with me. Except my sister who arrived December 21 to visit dad, and was in shock at my appearance. She pleaded with me to go to the hospital. I was persuaded. I was admitted to Chester County Hospital under Dr. Berman's care.

"Be not afraid of growing slowly-Be afraid only of standing still" - Chinese Proverb

THE HOSPITAL

On Christmas Eve, with a testicle the size of a small orange, I was diagnosed with stage III Testicular Cancer. The tumors had spread to my abdomen and lungs. My family members had been informed that one more week without treatment could have resulted in my death. Because of my inadequate health care coverage I had to use Medicaid. This, unfortunately, required that I had to stay in the hospital while receiving chemotherapy, marking the beginning of a long and lonely course at Chester County.

Christmas Day I started chemo. It was risky to start chemo before knowing exactly what form of TC I had. They normally remove the testicle first to biopsy it, but since I was so advanced, Dr. Berman wanted to be aggressive before the tumors spread even further. Earlier that day, my brother brought his kids for a visit, and they were able to open the gifts I got them. I lost it big time. Seeing those two kids so happy over a couple of gifts, their faces lit up, broke me. I thought I might not live to see that again.

I had a portacath inserted for the chemo. When I awoke after that procedure my father was there, and it was such a relief to see him. I knew it was difficult for him to be there. My sister stayed for the first dose of chemo that night. I had a reaction to one of the chemicals and almost stopped breathing. Since I couldn't reach the call button she ran to the nurse's station for help. Thank God she was there. I was given some Benadryl and an hour later, we started again. (Note: that some time later an angel of a nurse had my chemo switched to the day time hours, allowing me to sleep in peace eventually).

Once treatment began, I was to almost never see my family much again. It had become evident to me that I was on this road alone. Treatment was going to consist of chemo five days, the second week one day, and then a two week break to give my blood counts some time to improve. [Editor's note: I'm sure if this is correct, but if it is, then it absolutely is not a standard protocol.] During treatment there was a night when I was freezing cold. The nurses had layers of blankets on me and still I was shaking. I starting crying from the fear and the loneliness, noone was there to help me through this. I eventually begged someone to please come to the hospital and bring my comforter.

After almost three weeks in the hospital I was going nuts! The morphine had really begun to play with my mind and hallucinating. I was making rounds thinking I was a nurse. To make it worse a priest came in to visit while I was sitting on the toilet. I went off on him shouting, "Jesus **** Christ! Doesn't anybody ***** knock in this place?" They finally cut back on my dosage after that. Despite that he came to see me every day.

I pleaded with my onco doc to let me out for the super bowl; to the point that I threatened to disconnect the IV and walk out. Relenting, he allowed me discharged for the weekend. My father picked me up and what a pair we looked like; cancer patient picking up cancer patient.

Even though I could barely walk, when I got home I went out immediately for a pack of cigarettes. After a couple of drags I had to open the door and puke. Lesson Learned. I rolled down the window and threw them at the front door where I had bought them.

"I'm not going to lie down and let trouble walk over me" - Ellen Glasgow

EMPOWERED TO LIVE

That first weekend home changed me forever. I read a book which went into detail about my cancer and how to cope with it. I discovered that TC was curable. Even in advanced cases if the chemo worked, the stats showed the chances for remission were attainable. One of the onco nurses gave me the book Gilda Radner wrote. If someone was able to approach cancer the way she did, then I could too! I realized I needed to be in charge of my life. I vowed from that moment on to be an active cancer patient; researching and asking questions.

Monday after the superbowl it was back to the house of horrors (the hospital). My mother had to take both me and my father. He had pneumonia and I was in for my I/O and more chemo. After surgery I had a fever of 104 and was transferred to intensive care where I stayed for three days. I had to receive three blood transfusions and my heart rate was abnormally low. I recovered and resumed chemo. My onco doc had my room changed so that I could be farther away from the nurse's station and noise. I was finally able to get a decent night's sleep. Sticking to light meals of grilled cheese, cheese crackers, and soup I had not gained any weight. Eventually my hair, eyebrows, and nose hair fell out. In spite of it all, I was beginning to feel better.

After a two week break I wrapped up my last chemo treatment in February of the new year 1996. I went to the University of Pennsylvania Hospital, to meet with the urology surgeon there. The final step was to remove the lymph nodes from my abdomen. The RPLND was considered along with the removal of my kidney since it wasn't functioning well and was blocking access to the lymph nodes behind it. So, in the second week of June right after my birthday, I was scheduled for RPLND the Monday following the weekend. Three days before the surgery date, I received a call from the doctor at UPenn. He explained that he would not being doing the full RPLND and wanted to try a relatively new procedure called laparoscopy. He went on to say that since I had such a bulky disease this was risky, and should there have been complications, they would open me up right away. After conferring with my urologist Dr. Anderson I was ready for it as it sounded like it wasn't going to be so bad.

Things did not go well in surgery, I had a lot of bleeding and my blood pressure kept dropping. The surgeon was able to extract a few nodes out and decided to send off what they had to the pathologist. When I awoke Dr. Anderson and one of the resident doctors were at my bedside. I was updated that based on the results from the pathologist I would have to do two more rounds of chemo; I was in tears. I had hoped the surgery would be the end of my treatment. I was crushed. Three days later I was released and had an appointment with Dr. Berman.

He was not agreement with more chemo because my markers were outstanding. He suggested surveillance with regular blood work, chest x-rays, and cat scans. I trusted Dr. Berman and respected his opinion, and although it was risky, I opted for his suggestion.

"As scary as death seems on earth, you can be in a better place when you die"- John P. Hughes

LOSING A PART OF ME

In May of 1997 my father was about to end his battle with cancer. I checked on my father one morning, and he wasn't conscious. I shook and shook, finally waking him and he was having a terrible time breathing. I ran downstairs to fetch his oxygen to administer right away and he appeared okay. However the following morning, I found him lying in his urine. When he awoke, he responded to me but wasn't coherent. I called 911 out of fear, I knew something was wrong.

He spent a month in the hospital and was on a ventilator when he was transferred to a nursing home. Two days later, my father died at age 54, and cancer had claimed another victim. He and I went on quite a journey. We spent the better part of a year going through cancer treatment together. Somehow, I never expected him to die. I thought if I could heal as sick I was, surely he could too. I never accepted the fact that he would be gone. His death has left a void that will never be replaced. I loved my dad and I miss him.

"If you have made mistakes there is always another chance for you. You may have a fresh start at any moment you choose. For this thing we call FAILURE is not the falling down, but the staying down."- Mary Pickford

HOPE RESTORED

Cancer for me was a wake up call. It was a catalyst for me to change not just my physical self but my whole self. I attribute a number of reasons for why I think I contracted cancer. But I'll spare you those. I have however, learned the importance of preventive medicine, how special loved ones are, to be more open about how I feel, and that it's okay to ask for help.

I continue to feel great and my health is outstanding. My AFP is 3.7, my BHCG is 1.0. All my x-rays are clear and the scans show no changes.

Recently, I had my 2 yr. sperm count taken. I was nervous waiting for the results. As it happens I am just fine and look forward to being a proud dad someday soon.

I do not like to use the words "I'm cured" or "I'm in remission," instead I prefer what my physicians use which is "there continues to be no evidence of the disease." The only medication I take now is a blood thinner for a recurring problem with a blood clot in my left leg as a result of my wild ride with cancer. My personal life is even better. I have fallen in love with the most wonderful person. Stephanie is the light of my life, she is my angel. Her compassion and understanding, and most of all the love she shows me, is something I have never allowed before in my life. She has taught me how not only to love, but to experience life, and live it to the fullest. We have set a wedding date and we'll be joined till the end of time.

My hope is that noone else will have to endure what I did. With early detection and regular exams there is no reason for most to have to suffer severely as many of us have. I would like to become more involved with TC awareness. Steph and I have discussed plans on implementing an awareness program here in this area of West Chester once she transfers here in January. She has already begun the process at Purdue University, as a student volunteer, and hopefully we can apply some of the things she has learned to our community in Pennsylvania.

I am also on the pain management team at Chester County Hospital as they wanted actual cancer patients to offer their input. I will continue to do what I can, to help this cause. Cancer has affected my life greatly. Short of my dream of being a husband, to live a comfortable but simple life, I'd like to win the lottery, play golf full time M-F, and be a full time dad. Since my chances of winning the lotto are pretty slim, I guess I'll plan on going to work and play golf whenever time permits.


Back to the personal stories page: Take me to the Testicular Cancer Resource Center Personal Stories Page!
 
This page was last updated on Dec 05, 2012
Copyright © 1998 - 2012 Testicular Cancer Resource Center and the Author, All Rights Reserved