Archive for the ‘Survivor Spotlights’ Category
Living Life after Testicular Cancer
When you’re 16 years old, your life is just really starting to kick off. The last two years of high school are beginning, and you begin to seriously plan your future. That is exactly what I was doing when my life came to a screeching halt. I had been feeling pain in my right testicle for a few months but didn’t really think much of it. It was always; oh I just picked up something too heavy. The week after I returned from vacation the pain just became too much to just be a “pulled muscle.” I finally decided to get into my family physician. I remember my doctor saying, “Wow I’ve never quite seen anything like this, it could be a number of things. Perhaps a pulled groin or you were hit in the testicles to hard, maybe even cancer but let’s put that on the back burner.” As a 16 year old my mind instantly stuck on cancer. Cancer?! What happens now? What do I do? My doctor immediately sent me to have an ultrasound of my groin performed. I received a call that night instructing me to return to the hospital to pick up a copy of the ultrasound and deliver it to my urologist, at an appointment the following morning. That night all I did was lay in bed wondering what could possibly be wrong that they’re not telling me. Why is everything happening so quickly?
The next morning I arrive at the urologist office. The physicians assist examined me and told me the urologist was reviewing the ultrasound that I had brought in and would be in shortly. After 45 minutes of waiting, the doctor finally entered the room. He examined my groin and became very serious. He looked me in the eyes and said, “I am very sorry but I believe you have cancer. I am not going to do a biopsy because I believe it is not needed, the ultrasound showed enough. We need to schedule surgery. I am available tomorrow.” At this point I didn’t know how to react. I sat there in shock looking at my mother crying. Everything was happening so quickly. My orchiectomy was scheduled for the very next morning.
I was very quiet the rest of the night. I called my friends and family, telling them I had cancer and would be having surgery the next day. How do you tell someone you have cancer? How do you bring that up? I sat down and discussed what was going to happen to the rest of my family. After a long period of hugs and well wishes I went to bed awaiting surgery the next day. The fear I felt walking into the hospital for surgery was like nothing I had ever felt. I tried to crack a few jokes with the surgeon just to calm myself down. I took that long walk down the hallway to the operating room. The feeling of the cold table is etched into my memory. I had a wonderful nurse who held my hand while I was put under. The rest of that day is kind of a blur. So in three short days I had gone from seeing my family physician for swelling in my groin to having my right testicle removed.
Now the recovery and countless cat scans begin. I am immediately referred to a local oncologist who breaks down what cancer really is and how we’re going to fight it. Unfortunately my tumor markers hadn’t gone back to a healthy range after my surgery. They weren’t really high, but just not quite where they should be. I was told we are going to do three months of the most aggressive chemotherapy to get those numbers back to normal.
Day 1, August 23rd 2008. This was coincidently my mother’s birthday. She spent the day with me saying I’ll have another birthday next year. I was filled with so many questions and concerns. Will my hair fall out? Will I gain weight? Will I lose weight? After this first visit I was scheduled to have a port inserted into my chest. The next three months were the slowest and hardest months of my life. From feeling sick every hour of everyday to running my hands through my hair and having my hair fall out into my hand and seeing my parents begin to sob. Through these months I had a teacher from my school bring me my work and teach me in my bed at the hospital and even in my home. As hard as these months were I had incredible support from my friends and family. My family never left my side the entire time. I finished hell on October 31, 2008. Unfortunately through that time my tumor markers only decreased a small amount. To this day they are not “normal”. I spent the next few months after chemo to try to get back to my everyday life. I went back to school in February 2009 to open arms from my truly amazing friends. My life slowly went back to normal and I was able to graduate on time in 2010!
Three years later I married my beautiful wife Danielle. I finally felt like my life was coming together. In April of 2014 I found out my wife was pregnant with our first child! We were ecstatic! Then in May my wife unfortunately had an ectopic pregnancy and we lost the baby. We decided to move on with our lives and take a break trying. On October 8th 2014 I found out my wife was pregnant again! On June 5th 2015, my daughter Gracelynn was born! 9lbs 4oz and 21 inches of pure happiness. We are so excited to be parents and to start this new chapter in our lives. Cancer was hell, but it made me into the man and father that I am today.
This is a story I submitted on Adrenaline Training Center’s (in London, Ontario, Canada) Facebook page Nov 2011 while fighting cancer. They had asked for people’s success stories.
My story is not about sports or weight loss, but it is about a fight. Recently I learned that I was in for the fight of my life. In my corner I already had my beautiful wife (Tammy), my family and a few close friends. Once Pete Brown who trains at Adrenaline Training Center and a member of Team Tompkins heard about my fight he offered to train with me at the gym.
I accepted his offer knowing I could use all the help available as my opponent had defeated many people before. With the love and support of my wife, friends, family and the new friendships I made at Adrenaline I knew losing was not an option.
On July 19th, 2011 the official announcement was made that I would compete in a 5 round title fight, my opponent for this epic bout, Stage 3 Testicular Cancer.
After surgery and 3 intense Chemo treatments my doctor tells me that the cancer is almost gone. As I write this it is 4 minutes into round 5. I am in the hospital having one last round of Chemo and with that my opponent is falling to the mat in what might just be the knock out of the night.
In between my treatments when I was able to, Pete would meet me at the gym to train. Some days I would get tired fairly easy due to the Chemo and our workouts would not be as long as other days. He always offered a positive attitude and support; he didn’t care if I was training for 5 minutes or an hour. Even though I was at the gym to train with Pete the rest of the guys there were very supportive. I feel that I have made a lot of friendships from my time at the gym.
I honestly believe that, other than the love and support of my wife, who fought this fight with me, the team at Adrenaline was in my corner helping me get through this fight with a win. What I gained at Adrenaline may not have cured my cancer, but it made the fight a little easier.
I would like to thank my wife (Tammy), Pete Brown, Chris Horodecki, Mark Hominick, Alex Gasson and all of the other members of Adrenaline/ Team Tompkins for helping me get through this and making my story a success!
March 23 2015 was my third year in remission. I am so proud to be a part of this gym/ family! Thanks again to everyone who helped me kick cancers butt!
Testicular Cancer at 20?
The only thing on my mind was school starting. I had just received straight A’s, made a lot of new friends and was looking forward to getting an internship in the spring. It was less than a week before the spring semester would start and I was looking forward to going back to school.
I woke up just like any other day during winter-cold. Usually when I am cold, I stick my hands in my pants since most of my sweatpants do not have pockets. I noticed a small lump I had never felt before in my left testicle. This bump was not huge and did not cause me any pain. I told myself if I still felt it in a week I would notify my parents. The next night at dinner my brother asked my mom about a rash he had on his leg. She thought it might be herpes and suggested he get checked immediately. Since we were on the subject, I told her about the small bump. She told me to see a doctor before I went back to school.
The next day I went to the pediatrician (yes, I still go to the pediatrician). He had a hard time finding it but as soon as he felt it recommended I see a urologist immediately. He had no idea what it was but assured me there was something there. I was to see a urologist the next day to finally find out what this mass was. I will never forget sitting on my mom’s bed the night before. We were talking about my appointment and she asked me if I was scared. Usually I would say no, but for some reason my stomach didn’t feel good about this. She assured me that everything was fine and that this was probably just an infection. I agreed with her because I did not want to worry her, but that night my worst fears were not even close to the reality.
As soon as I got to the urologist’s office, my urologist requested I take a pee test to see if it was an infection or kidney stones. I had just urinated so I told him that he would have to wait. He asked me to show him the mass and I would do the test after. I showed him the bump and as soon as he felt it he left the room. He got on the phone and I heard him say “I don’t care if you are booked today, you NEED to see this kid! It’s an emergency”. He told me I would need an ultrasound to determine whether or not this mass was just a cyst or a scar or if it was a tumor. I tried to not think the worst but I started to get scared. I saw the screen while I was getting my ultrasound and noticed a black circle on my left testicle. I tried to keep calm, but it was getting harder and harder. I would bring the ultrasound results back to my urologist who would give me the horrible news.
My urologist, Dr. Bloom, sat me down and told me “There’s no easy way to tell you…but you have a malignant tumor on your left testicle that is cancerous. You will need to have surgery to remove your testicle”. No one in their life ever expects to hear they have cancer, but not having any family present was even more difficult. I told Dr. Bloom that he had to call my parents and let them know, there was no way I could ever tell them “I have cancer”. Hearing my parents’ reaction to that might be the hardest thing I have ever dealt with in my life.
It took me about ten hours for me to process I had cancer. Word spread so fast that people were calling and texting me all day to talk to me and to show their support. I received so much comfort right away that it was not until I was in my bed that night by myself that it hit me. I had cancer.
Nobody expects to get cancer, but I thought my case was very unique. I was 20 years old, worked out twice a day, ate very healthy, and had no family history of cancer. I never thought that anything would ever happen to me, that I was impervious to harm. I would need an orchiectomy and not be able to workout or lift anything over ten pounds for six weeks. This recovery time was especially hard for me. I can’t explain how hard it is to be so active one week and the next week, barely able to walk.
The recovery period was a changing point for me in my life. Not being able to attend school, exercise, or do anything pretty much limits how much you can do. A lot of my days were spent thinking about a variety of things. Having cancer affected me mentally as much as it did physically, it really changes who you are and your outlook on life. I told myself that after the six week recovery period was over that I wanted to be a different person. Although my life was not in jeopardy, it certainly changed my viewpoint on life. I cut out people in my life who I did not think were beneficial to me and changed my demeanor. I was always and still am a very generous and nice person. However, in the past I would sometimes allow people to walk all over me (partially because I’m only 5’5”). Coming out of this, I had the mindset that I just BEAT cancer and I would not let people disrespect me the way before. I also told myself that when the doctor told me I was cancer-free that I would get a tattoo to show my accomplishment as a reminder everyday that I beat cancer.
It has been a little over four months since my diagnosis and I could not picture my life being better. I am surrounded by amazing friends and family who constantly check up on me and make me feel appreciated. I continue to workout twice a day and am almost in as good shape as I was before surgery. Most people who find out I had cancer are very surprised because of how I look now and the energy I have.
What’s in store for me now? I am heading into my senior year at Towson and am pursuing a sport management degree. I have to get frequent blood work, CT scans, and X-rays for the next four years with lessening frequency each year. I believe sometimes in life we have a revelation that lets us know we need change in our lives. I was never expecting cancer in my life, but I had to make the most of the unfortunate situation I was handed. I wake up everyday and feel blessed because I know not everyone is guaranteed tomorrow.
You have no balls… I do not know how many times in my life I have heard that statement, it has to be thousands of times. Every single in reference is based on the idea of me not being macho enough, or not having the guts to take on a challenge. I’m not saying that I am a wimp, but men tend to challenge each other’s “testicular fortitude” for basically anything.
Taken literally most people don’t really think about that statement, but for me, a bilateral testicular cancer survivor, this is a fact of life.
I was diagnosed the first time, on February 7th, 2007. At 22 years old, and in college, the last thing on my mind was cancer, so as you could imagine this diagnosis hit like a ton of bricks. I will never forget the moment, sitting in my Urologist’s office, (at that age I do not even think I knew what a Urologist was) he was telling me that I had cancer, I was in such shock, the doctor had to call my parents to explain the situation. Speechless, the doctor explained to me what the next steps were, and he noted how from the start that this cancer can be beaten. Moments after my diagnosis he was giving percentage chances of survival at 90+%.
Lucky, for me I had only felt the lump down there three days earlier, a simple self-examination. I cannot express how important my next actions were. Like I said early, at the age of 22, I could have felt the lump, and went on with my life, at that age any man basically feels indestructible, so it was pretty obvious that cancer was not on my mind. However something did not sit right with me, and I made the decision to not wait, I was in my primary care physicians office the next morning, and two days later I was in with the urologist, and by February 9th, I was having surgery to remove one of my testicles.
Seeing that this was such a quick turn around, I got even luckier to find out that my cancer had not spread, it was localized to the testicle and there was no need for chemotherapy or radiation. My treatment plan was to start a comprehensive tracking program to make sure the cancer did not come back. In the first year, monthly blood work checks, x-rays and cat scans; second year every-other month, and so on. I was told that at five years you are considered cancer free, and have a clean bill of health. I was starting a long progress of being in a doctor’s office way more than I ever wanted, but I knew it had to be done.
That takes us to May 5th of 2010. My wife and I (at the time we were just dating), had completed the inspection on the home we were about to purchase the night before. I had the engagement ring ready to go for the first moment we were alone in the house together, it was a joyous time, and then I felt a lump again. I did not wait, within hours I was at my urologist’s office (this time I knew what that doctor treated) and was being told, you have testicular cancer again.
Being told the second time that you have been diagnosed with testicular cancer was harder than the first. I had been in a comprehensive plan to track and make sure it didn’t come back, and questions lingered. How would I start a family? What does this mean for my sex life? If we had been tracking it so diligently, how did this happen? Has the cancer spread this time? Without a doubt, the most mentally exhausting moment of my young life.
This time around things didn’t move as quickly. The day I saw my urologist I was told in order to have a family I would have to cryogenically freeze my sperm. I would have to perform the act multiple times on multiple different days so that the center for reproductive services would have enough. I was also told that with the removal of my second testicle, I would not produce testosterone, and as such I would need to start and continue through the rest of my life testosterone replacement therapy. On May 28, 2010 I had surgery to remove my second testicle, and shortly thereafter I was told that again the cancer did not spread. Phewww! However in order to really make sure things were not going to come back my oncologist suggested one round of strong chemotherapy. Like the first time I was diagnosed I sought a second opinion, but unlike the first time I was given a different option.
My second opinion physician suggested that chemotherapy was one of a number of options, but tracking the disease as we did the first time would also be an option. This was without a doubt the hardest decision I had to make. I chose to not go through chemotherapy and track my disease just as we did the first time. I am still counting the days to May 28th, 2015 (so close).
Being diagnosed with testicular cancer or any type of cancer is a struggle. It drains you physically and emotionally, it stresses family members and friends, and it makes you question some of the bigger picture in life.
As I mentioned earlier at the same time I was diagnosed I was ready to propose to my then girlfriend, and ready to buy a house. I was also working on my Master’s Degree in Business Administration. Quite the busy time for me. It wasn’t until maybe 18 months later in which not having any balls really impacted my life. Lynne and I had been happily married for about six months, and were thinking about starting a family. In pure honesty, for most married couples these is an easy decision on when, and soon after that many couples are pregnant. For us it was completely different. We were faced with the challenge of when to start In Vitro Fertilization (IVF), and the cost of it.
After finding out that this type of treatment was not covered under either of our insurances, my wife and I had to decide how to pay for the $16,000.00 for the treatment. With both of us fairly young in our careers and being home owners, the money was not just there for us to go and spend. For three years we grappled with the financial responsibility of attempting to have a child, throughout the process a number of married friends and family made wonderful announcements that they were expecting. This is mentally draining for a couple who wants to have children but cannot afford it. It is like being completely torn as you are incredibly excited for your friends, but completely upset that it wasn’t you.
Finally after making some incredible tough decisions, in September of 2013 we decided to go for it, the IVF was paid for and the medications where in our hand. However going through IVF does not mean any guarantees of having a baby. The process of going through IVF is painful and tireless for a woman. I believe that my wife went through more pain and discomfort than I ever did with surgeries or any testing; IVF requires that you to inject your wife with multiple medications on a daily basis for almost two and a half months. It requires multiple procedures for the women, including the harvesting of eggs, and placement of embryos. Once an embryo is placed it is a waiting game.
One of the biggest decisions a couple has to make when choosing to proceed with IVF is how many embryos they want to put “in.” In our situation we decided to place two healthy embryos. This means that if both take than we would be blessed with twins. Many IVF places will even put more in, but the best places are ones that provide a high pregnancy rate with only a placement of one or two embryos. Our treatment at the University of Connecticut Center for Reproductive Services in our state had the highest success rate with only placing one or two embryos.
Now to the good news, approximately a month after the placement of the embryos we found out Lynne was pregnant, we also found out that only one of the two placed embryos made it, we were expecting once child, what a blessing!
As a man, to be diagnosed with testicular cancer twice, provides itself with a number of different challenges. The reality of my disease is with me every day; however, I consider myself incredibly lucky. I have read and learned about many people who have been diagnosed with the same disease and because of the situation had to treat with chemotherapy and radiation, and of course, a number of men will die from this disease even with today’s advanced medicine and treatment.
Our son Joseph Anthony Buccheri is now 8 months old, and is the greatest thing that has ever happened to us. If I can provide any advice to anyone who is reading this, is that the mental part of going through the thought of treatment and cancer has been the toughest part, even harder to deal with was the mental anxiety and anguish of attempting to start a family. However, any survivor reading this can know, that no matter how down you are about it, the next time someone says “you have no balls,” you can smile and laugh knowing that in fact that no matter what, you do, and you should be proud of it.
Also check out Rocco’s story that was featured on the local news.
I wrote my personal story a few months ago when I finally felt ready to revisit some of the memories. I thought I would share it more to support those that may be experiencing the same struggles in life.
A little over four years ago I found a lump. With this lump I found complete fear, anxiety, and uncertainty. I was paralyzed with emotions. I’m unsure of the following 5 days leading up to surgery, as everything became a blur. I remember sitting in the waiting room with my mother. Everything seemed cold, the floors, the chairs – the people. The only warmth was from my mother’s hand holding mine. I recall not being able to walk on my own to the operating room. I became weak in the knees and fell in the hall as I was passing operating room equipment that was covered in blood from the prior individual that was in surgery. What was their illness? What was their fate?
As I was supported into this bright white room these questions quickly slipped away from my mind. I was frozen in fear. I found myself lying on a cold table – arms stretched out in both directions, naked, scared. I looked around the room and seen roughly 5 other people preparing various things. I.V and needles being placed in both arms – at the same time – as another individual began to write lines on my lower abdomen. Another individual approached me with a document that I had to sign – agreeing that no legal action could be taken against the hospital if I died – more fear. I was told to count backwards from 10, 9, 8, 7 – the walls melted.
I woke hours later – reaching down in disbelief and complete pain. I seen a nurse walking by and attempted to ask a question. I got as far as “Is it…?”. She immediately stopped what she was doing while nodding “yes”. She came over to my side and took my arm for a few moments in a supporting gesture. The only medical staff that had shown feeling towards me – and I never even got to know her name.
I was sent home later that evening, unable to walk straight, and heavily medicated. I kissed my mother, I kissed my wife. I held and hugged my son – and prayed for the child that my wife had been carrying for the past 3 months.
Now I waited – fear, anxiety, and uncertainty – with every ring of the phone. Waiting for the phone call seemed to take forever. I was unable to do anything on my own. I was depressed and had lost my independence. My wife helped me get dressed, showered, cooked meals, and even assisted me with using the bathroom. My wife that was 3 months pregnant- suffering from severe morning sickness – and still caring for our 2 year old son.
Three weeks after surgery the phone rang. My wife answered it however she had to come and help me out of bed to take the call, as the doctor would only speak with me – fear, anxiety, and uncertainty. The walk down to the living room was a mirror reflection of how I felt walking into the operating room.
I cannot remember this conversation. I can remember my mother and wife embracing me – warmth. The cancer had spread to my stomach, abdomen, and my neck. I spoke with my family, my friends. My father passed away from Leukemia when I was 8. My mother fought cancer a few times and had won. So, this is my fate? This is how it ends? NO!
I was back at the hospital within 24 hours being prepared for chemotherapy. My veins were collapsing so I had another surgery to have a PIC line placed in my left arm – a tube that lead to my heart to deliver the chemo into my blood stream. I came home and spent time with my family and friends. I got everything in order. Work, Bank, Rent – Everything – including my will.
Four years ago today I stated my first chemo. I had to change everything, and everything changed. I did not focus on how I felt – I couldn’t – nor did my wife, as the stress would not be positive for our unborn child. I fought – She fought – We all fought! My wife was not able to come to my treatments due to being pregnant. My mother and family came as often as they could – I preferred to be on my own, as I wanted my independence. I did not want to be seen for my physical appearance however for the strength I had found in everyone around me. The first week of chemo caught me by surprise. It was everything you think it is and even more. I adopted a routine – I took control. Nothing was going to fuck with me!
While at home it was an interesting juggle of things. I would be in the bathroom from midnight until the morning hours due to the side effects of the chemo. My wife would then be in the bathroom for most of the morning due to the side effects of pregnancy. This was a blessing on its own as we only have 1 bathroom.
Around the third week of chemo my hair began to fall out. I did not recognize myself in the mirror anymore. I felt sad and depressed for a brief moment – I took control. I did not want this change in my appearance to bother my son – so as I was looking in the mirror I decided to write my name with a nice bold spot as I removed my hair in little chunks. It took me almost an hour however I did it. I had a bald spot that said “Jon”. I went downstairs and eagerly asked my son to read it. It took him a moment and he sounded it out “Noj”? Apparently I forget to take into consideration that when you write using a mirror it comes out backwards. Lesson learned and we have never forgotten this.
As the first 3 weeks came to an end I was getting bored – and bored of being sick. I had read everything I could find about my form of cancer, joined all the groups online, seen all the specialists. – I was not content and very anxious as a result. It was time for another distraction. My wife was now 4 months pregnant and we had yet to renovate and establish a nursery – Mission accepted!
After taking the bus to Wal-Mart and Millwork I was set to begin my next task. Within 2 weeks the nursery was painted, furniture built – I was at peace – and exhausted.
I would often walk daily to the hospital for my treatments. I was blessed to meet extraordinary people during this time –sadly lost some of the bravest as well. As I was walking home one day I was stopped by the police. I was questioned as to if I had been drinking and using drugs due to my appearance. The officer did not believe me – questioning the marks on my arms. The officer continued to ask me if I have any dirty needles on me as he was talking into his radio – not paying attention to what I was saying – he had already made up his mind on me. I was asked for my I.D and provided it – along with my cancer patient I.D card and a long list of medications that I was prescribed. I smiled as he attempted to read them out loud. I now had his full attention – but didn’t care. I kindly turned down the drive home and asked to be excused. I walked the rest of the way home with a large question mark floating around in my head.
I got home and checked the mail – an eviction notice. I promptly went over to the landlord’s home and rang the bell. I was greeted by a new landlord that only opened the door a small crack. She promptly seen the letter in my hand and stated, “You don’t pay your rent – you’re out!” and closed the door in my face. I was exhausted and went home. I sat in the living room questioning what had just occurred over the past hour. I went into the kitchen to get some water. I looked around and was not pleased with the colour – another distraction had been found. Three days later the kitchen was repainted – and had a nice highchair to match!
I reached out for support and attended an office of parliament. Sadly this meeting can be summed up as to the same prior mentioned police officer for the way I was treated by the reception lady. After waiting for over an hour in the office to meet with someone I was told that no one would be able to meet with me. I was asked to sign consent forms to open a line of communication. I struggled to the desk area after being seated for so long. I began to read over the forms as the members of parliament exited behind me. I attempted to introduce myself however I was greeted by blank stares –I seen the hesitation in their faces as I reached out to shake their hands. I was again judged all too quickly. I left the office and never looked back – and never voted for him again. I should add that he lost the recent election. I returned home to my family.
I spoke with the housing tribunal along with some friends I had made along the way. I was no longer being evicted. Also we got a new landlord pretty quick after that – coincidence?
Days turned into weeks. I kept distracted – happy, full of humor and love, with a new aspect on life. I surrounded myself with those that I wanted to be like – people that treated me the way they wanted to be treated in return – unselfish and not materialistic – people that give back to the less fortunate and expect nothing else in return. I spent a lot of time with family – my mother was with me all the way.
On Friday December 18th I was told that the chemo was not working as my cancer cells had spiked. I went home – I was again lost. I found comfort in everyone around me and the ones I had met on this journey. I do not consider myself religious – however I prayed.
I prayed for my Son,
I prayed for my Mother,
I prayed for my Wife and Unborn son,
I prayed for my Family and all Loved Ones.
On Monday December 2st I arrived at the doctors to continue this fight. After being prepped for chemo again my fresh blood work results came back. Due to a “false negative” on Friday my tests were wrong.
I was in REMISSION!!
Apparently someone along the way had prayed for me as well.
Four years later I have 1460 days to be thankful for – surrounded by the best family and friends I could ever ask for.
Thank you for taking the time to read,
“The Monster Between My Legs”
I was showering when I noticed that my right testicle had grown in size and had become hard to the touch. It had always felt a little raw and tender when compared to the other one but I never really paid any attention to it. When I noticed the swelling, I went to see my doctor who told me that it could just be an infection (although he was worried when I told him that it did not feel painful). He gave me a course of antibiotics and told me that if the swelling did not recede after ten days I should go and see him.
After eight days there was no improvement so I decided not wait any longer. I went back to see my doctor who told me that I should take an ultrasound and he added that I should go straight away. That last statement took me aback but he still did not mention the ‘c’ word. I went to the clinic, dreading what the outcome will be. After the radiologist performed the ultrasound, he told me that most probably I have seminoma cancer and judging by the size of swelling it had been developing for about three months. He told me that I had to be operated to remove the testicle as soon as possible, within the following two weeks, the sooner the better. I was devastated. A million thoughts were running through my mind, but I was just too numb with shock to stay asking anything.
I went home to break the news to my wife (I had not mentioned anything to her, thinking that this was just something trivial). She went ballistic, most of all because I had never told her anything beforehand. After the first shock passed we tried to get stock of the situation.
We arranged a meeting with the surgeon who was going to perform the operation. He stayed explaining the procedure he was going to perform and then asked us if we had any questions. He was bombarded. Could I have transmitted cancer to my wife when we made love? No was the answer. Was the other testicle affected? No again, the scrotum has a flap, which separated one from the other. Was there any spread? That will be assessed after the operation and the biopsy made. What would be the recovery time? 2-3 weeks. Would the loss of a testicle affect things like voice, testosterone production? One testicle should cope. The questions just kept on coming and he just kept patiently answering. A date was set for the coming week.
It was the longest week of my life, my wife was a pillar of strength and supported me in every way possible. On the day I felt as if my guts were in knots. By the time we arrived to the clinic I was close to loosing my composure, the stress was just unbearable. Not just the thought of the operation was on my mind, but I was worried that the cancer could have spread and that my wife would not see me the same way after the operation. It was a very dark period in my life.
Once the operation was over and done with I came round in a bed with my wife by my side. The first news from the surgeon was positive; there did not seem to have been any spread, the cancer was confined to the testicle and did not break the surface or reach any vessels. For that at least I was thankful.
After I recovered from the operation I had to undergo scans to be sure that no further spread had occurred. The results were that I was clear. It was of little consolation however since I was feeling very depressed after what I went through. My wife was detrimental in helping me come out of it. Her motivation and support were invaluable, I will be in her debt forever.
About five months after the operation I started hearing a voice in my head telling me that I needed to do something about this disease. I just could not stand by and do nothing. In the end I started writing a book, it took me about two years to complete. It’s called ‘The Monster Between My Legs’ and is actually a novel with a humorous theme inspired by what I went through. All the proceeds are going to help local cancer foundations that are doing so much good work. It’s my way of trying to help get some awareness about testicular cancer and get some much-needed funds to these institutions.
My Own Day of Infamy
It was like any other monotonous day on the ship. Wednesday, August 25th, 2010 to be exact. I had just finished my 14 hour shift for the day and my work out in the gym so I was more than ready for a shower. Lucky for me, the water on the George Washington was rather warm that day. Warm water is a big deal at 9pm (2100) being on an aircraft carrier of 4800 sailors. Figuring that 80% of the crew is day shift, like I was at the time, there are about 3800 sailors taking a shower at one time within a four hour window. Anyway, I digress; warm water on the floating city is always something to look forward to. So I’m taking my shower and my time doing it…then ouch. Ouch in the shower can be rare, this time was peculiarly rare solely based on the location of the pain. I carefully went over my left testicle again, more gentile than before. It was extremely painful and very sensitive. Now I realized I should compare and contrast. I softly felt my right, noting that under the skin was smooth, all around. I checked the left, not so much. It felt as though there were multiple calluses encompassing it, and quite tender. Well I did not like that of course. Like any other guy, I endured the pain for a week hoping it would go away, naturally it didn’t. On September 1st, constant pain in the left testicle began to form as though I was just kicked in that region. I went to medical at 3pm that day and was seen by the ship’s Chief Medical Officer (a Captain at that) and the lieutenant surgeon. Both explained to me that the growing mass was very concerning; however they could only observe to an extent by means of exterior feeling. I was told that since we (the ship) were three days off the coast of Manila, Philippines that I would be flown from Clark AFB back to homeport in Yokosuka, Japan for an ultrasound.
On Sunday, September 5th at 0300, while five miles anchored off the coast of Manila would be the last time I would perform the duties I joined and trained for, until arriving on the USS Boxer January 16, 2013. With my sea-bag half full and backpack of electronics, I boarded the liberty boat at 0600 that would take me to the mainland. I was only on the mainland for five hours before the plane took off from Clark AFB for Japan.
The dreadful week began on Tuesday, the 7th consisting of blood tests and an ultrasound, which is cold by the way. The effects of the temperature in that area made it difficult for the technician to retrieve quality images. Once that was complete and I got warm again I headed over to my doctors office to see what she learned. No sooner than five minutes of sitting down did she tell me that I would be going in for surgery in 20 hours for a unilateral orchiectomy (removal of my left testicle) at 0800 the next morning. She didn’t know what the mass growing was, but they would remove it anyway just to be safe. Naturally I was defensive and asked if they couldn’t cut me open and take a sample. The doc said, “That may induce spreading, thus it is safer to remove it now” (Easy for you to say). According to my blood labs my hCG level was 15. The hCG is a hormone mainly produced by females during pregnancy. Male levels range on average 1-5.
I went into surgery 0830 Wednesday morning and didn’t wake up until 2pm in a world of pain. Morphine via IV only does so much. Plus, I felt half the man I use to be, as though I were missing something. I was confided to bed rest in the hospital for 24hrs before I could leave. Once discharged from the hospital, I was allowed 7 days convalescent leave and a big bottle of 800mg Percocet’s (2 every 4hrs). I didn’t see my doctor until Tuesday the 21st for more blood tests and a CT-scan. My hCG level had now risen to 25, while the CT-scan proved signs of spreading through my lymph node system. The lymphnotic system is what makes cancer so deadly. The system runs through all the major areas of your body, giving the cancer a highway to spread. Normal lymph nodes should be 1-2mm in diameter. Mine were 1.2 cm and 2.3cm. I was informed that day that my testicle was sent to Balboa Hospital in San Diego for a biopsy. It was then my doctor quietly broke the news to me and told me I was diagnosed with Embryonic Testicular Cancer. In a way, I was relieved to learn that it was something serious than not, for they already took my testicle as it was. It was good to know I lost it for a reason, not on a whim. So here I am in Japan, 21 years old, after only a year in the Navy, and I get stuck with the rarest of the rarest cancers, which happens to be the fastest spreading. Testicular Cancer alone is the most curable if you look on the bright side. I broke the news to my parents. My father stayed strong as he should. My mother on the other hand was a wreck. Five days later on Sept 26th at 12:07pm I landed in San Diego International and headed for home to surprise my parents. My mother broke down once I stepped foot in the door.
The doctor appointments at Balboa Hospital began the very next day discussing my case to the Urologist and Oncologist. The busy day ended with a blood test and checking into Med-Hold. My hCG level jumped to 37. The following week was filled with check-in paper work, other small appointments and three visits to the Fertility Center of California of San Diego. It was at that time the seriousness of my condition set in. I was only 21 at the time but I knew then someday I would want to be a father. Having cancer was jeopardizing my opportunity to do so. My doctor explained to me that chemotherapy would possibly cause me to be infertile for one year, with a 50% chance of being infertile forever. She recommended that it would be a good idea to make a “deposit” at the “bank”. The interest rate was low but oh well. Let me tell you, never have I done anything so embarrassing before in my life. The first time I went was in my service uniform. I was definitely not dressed for the occasion. Of course, only females worked there except one male doctor. They know what you are doing behind that door, in the leather seat with the sanitation cover, flat screen TV with a DVD or choice of magazines. In the back of my head I think, “Do I rush or take my time? Come out in 5 minutes they may think I’m quick on the draw. Take too long and they may start to worry.” Anyway, I did not enjoy those three visits. However on the plus side, after my last “deposit” a doctor spoke to me about my samples and was pleased to tell me that average sperm count is 20 million parts/ml for the avg. male. However based on my condition I was cranking out 16 million parts/ml. I got me some Navy SEALS. My doctor urged me to quit smoking during chemo. I said “Why? I don’t have lung cancer. I have Testicular Cancer. You should tell me to quit sex with that logic.” She did not find my logic amusing as I did.
The first cycle of chemo did not begin until October 18, 2010- Oct 22, 2010 (hCG level = about 61). Each cycle was five days in a row, four hours long each day. The morning of the 18th began at 0800 as I went into surgery for the placement of what is called a Power Injection Port. It’s a device that sits under the skin just below my right collar bone. It’s about the size of a penny with a gel like top and cord that run to my neck and into my jugular vein. This is so that the chemo may be administered easier and less painful rather than a daily prick of an IV. Once I took my anti-nausea medications (worth over $500) they hooked me up with a 2mm needle that the nurses taped over and I kept it in for the week of the cycle. At the end of the needle is a tube just like a normal IV would be with an end to screw in another line for either 1000/ml saline w/ 0.9% potassium for pre-hydration, 1000/ml of chemo, and another 1000/ml saline with 0.9% potassium for post-hydration. The chemo I was administered was called BEP (bleomycin, etoposide, and cisplatin). All three drugs have different side effects however only bleomycin, etoposide cause infertility. Chemo is a drug that kills fast growing cells. This includes the cancer itself, but also hair and blood cells. The red cells carry oxygen throughout the body, which made me more tired. White blood cells are my immune system, the lesser the easier it is to get sick. The platelets help make scabs and prevent bruising. By the end of the day of chemo I went straight to bed and usually didn’t wake up until midnight or so. I’d make a fast-food run to Jack-in-the-Box and order 10 tacos then head over to 7-Eleven for a double gulp. I still had my appetite God bless me and managed to gain 60 pounds during the course of my year in Med-Hold. Something I am still working to get off. It mother found it hard once my hair began falling out after only the first week of chemo and on her birthday too. Cycle 2 was suppose to begin on November 1st, however my hands broke out and formed hard, painful calluses and blemishes on my wrist that look like scars. Cycle 2 was postponed one week. I also had another blood test to check my hCG level and the results showed that in one cycle I dropped all the way down to level 3. I finished chemotherapy on December 31, 2010.
The January 2011 CT-scans reviled two lymph-nodes 6mm wide in my aorta track and a 5mm one in my lung. Normally lymph-nodes should be 1-2mm and when I still had the tumor back in September they were 1.2cm. So, they were not big enough to create a scare however something had to be done with them. For those who do not know, (I didn’t at first) the aorta is by Wikipedia definition (at times, a credible source) the largest artery in the body, originating from the left ventricle of the heart and extending down to the abdomen, where it branches off into two smaller arteries. After reviewing my CT-scans, my Oncologist said that she was fine with “the observation stage” meaning CT-scans every 2-3 months to track if there was any growth of the swollen lymph-nodes. She would present my case to the Tumor Board for their opinion as well. In the meantime, she recommended I get a second opinion from the Head Urologist and learn what he thinks.
Two weeks later, mid-February, I met with the urologist and his recommendation was to perform a Retroperitoneal Lymph Node Dissection (RPLND) to remove the two lymph-nodes in my aortic track and leave the one in my lung only due to the fact that the surgery to do that is more of a risk than the actual lymph-node itself. His reasoning behind the surgery was that, one, could possibly turn into a teratoma cyst later in life (A teratoma is an encapsulated tumor with tissue or organ components resembling normal derivatives of all three germ layers). Or 2, be benign, or 3 could just be scar tissue. I thanked him for looking at my case and went on my way; right back to my Oncologist. I told her he recommended the surgery and she was quite surprised. She said it’s up to me now, obverse or surgery. I asked her when is the soonest I may have a second CT-scan to see any possible growth and she said two months from the last one. So I had a second CT-scan in mid-March and the results turned out to be the same as the last one. Neither growth nor shrinkage. I took the next weeks researching the surgery, learning the risks involved, talking with friends and family members for their insight on what I should do. I came to the conclusion of going through with the surgery for numerous reasons. One being that it would be a greater toll on my body if I was to wait until age 30 or 40. Being 22 I would heal faster and quicker. Secondly, so that I may end this chapter of my life and press forward with my career which has been on hold since September 5th. So I called it preventative maintenance.
The original surgery date was May 27 at 0600. However do to hungry issues and not eating for 18 hours per doctors orders. I indulged in a Slim-Fast the morning of, thinking liquid was ok. The surgery was postponed until June 9th. This worked out well because my advancement ceremony to E5 was on the 2nd and attending it would have been a painful challenge 6 days after surgery. The morning of the 9th began with checking in a 0900 however not going into the OR until 1pm. It took the doctors a good hour just to get my epidural set up, which also took them two tries. The surgery lasted five hours and I was placed in ICU. It was a complete success. I didn’t fully wake up until about 9:45pm with my girlfriend Nicole at the time (Married November 11, 2011) by my side in the room. Turns out the epidural worked on only the right half of the incision. The incision began one inch below my sternum and extends two inches past my waist totaling 10.5 inches long and 66 staples holding me together. The next day, Friday, the doctors wanted me out of bed and sitting up in a chair for half the day. Then once they moved me to the wardrooms, they insist I walk around as well. Using a walker, my IV machine and catheter bag behind me, two orderlies and Nikki, I made one lap around the desk area at about 2mph. Back in my bed they finally left me a alone for awhile. The worse part of it was the pain meds weren’t working one bit and I was on a “no nothing” diet for the first 2 days. Saturday I was finally allowed 30ml of water/hr, the same as those plastic cups on the top of NyQuil bottles.
According to the doctors I was making great progress and they were very surprised how fast I was healing. I made it to 3 laps around the desk that day. Sunday morning came with a treat, liquid diet stage. Never has Jell-o tasted so good. Everything else was questionable. They removed my catheter around 1pm and told me I must pee 300cc in 6 hours on my own or they would put the catheter back in. So I guess you could say I had some motivation. By 715pm I was only at 250cc and finally by 8pm got up to 500cc. I went another 1400cc in 4 hours. Sunday night I was able to eat “real” hospital food again. Monday I was discharged from the hospital with the doctors pleased to see how quickly I was recovering. For pain, I was given 325mg Tylenol, 5mg and 10mg Oxycontin. None of it worked effectively the first week and a half. I had my staples removed the following Monday and continued to recover in Huntington Beach, CA until July 14, when I had to report back to Active Duty. Five month later after recovering from this major surgery, I received my first PFA failure due to BCA. The doctor claimed that even though I had a rare extensive surgery that required cutting open my abdominal muscles 10.5 inches long and removing my intestines to reach the lymph nodes that needed to be taken out, I should “Just lower my calorie intake.”
After a year had passed since I completed chemotherapy, the fertility clinic wanted me to begin coming in again to test samples and view the affects it had on me. I went in February 2012 for a check-up. Just as my doctor told me before I began chemotherapy 16 months prior, my count was less than 100,000 per/ml. The doctor at the clinic said this was normal. The real test is once two years have passed since my last day of chemotherapy. From there, what every my count is in two years is most likely what my count will be for the rest of my life. A few months later I went back for another check up on July 17, 2012. My count only rose to 2.4 million per/ml. It was not looking hopeful. My fears came true on March 6, 2013, two years and three months since my last chemotherapy treatment. My count was only at a measly 3.2 million per/ml. In the matter of 25 months, my count dropped from 16 million to 3.2 million. My odds of having children have greatly decreased. To further worsen those odds, my wife is currently on dialysis due to kidney failure. There have been no known cases of any woman on dialysis to carry a child to full term. My wife and I now play the waiting game for the next 3-5 years until she can receive a kidney and before we can start a family of our own.
Every day for the rest of my life, if I think I’m having a crappy day, I think of where I came from and what I have to be thankful for. No day is worst than a day of chemo thinking you will never get better. But I did get better. I was given a second chance. I survived and was able to continue my Naval career. This is why I always live on the positive side of life. I am overjoyed and proud to say that 10 months, 2 surgeries, and 20 days of chemotherapy later I have beaten Testicular Cancer.
7 Year Testicular Cancer Survivor
I was diagnosed with TC right after New Years, Jan. 2006. I was 53 at the time. So far, I have been clear of any cancer and happy to be alive! Here is my story…
I had been involved in a martial arts discipline for several years, as well as weight lifting, when I first noticed the symptoms but was unaware of what they were. It started off as groin pain. I went to see my family doctor and after a series of questions regarding my lifestyle, he suspected that it was a pulled muscle in my groin area.
Medication did not help and the pain persisted. About two weeks later, while showering, I noticed that my right testicle was swollen to about the size of a golf ball! I immediately told my wife, who in turn called an emergency room thinking that it was testicular torsion? She had studied to be a nurse and still remains quite interested in the medical field.
Given that it was a Saturday night, we were told to see our family doctor as soon as possible. On Monday morning I called the doctor and was brought in immediately. He took one look and sent me off for an ultrasound and an appointment with an urologist. As I was waiting for the ultrasound results, the urologist was calling asking where I was. My wife and I finally got to the urologist and after looking at my testicles and ultrasound, the doctor said, ”you have cancer”, that was all I heard. I literally blocked everything else out!
My wife told me that I was scheduled for surgery to remove the testicle on Thursday. Surgery was fine, no complications. Later I had a follow up visit with an oncologist and was told that he suspected that the cancer might have spread into my lymph nodes.
I was told that I had two options: first was to have major surgery, a RPLND, to do a biopsy to determine whether or not the cancer spread or second, have monthly medical tests and visits with the oncologist for a year to see if the cancer had spread.
My wife told me that I was going for the surgery! Mind you, this is a serious invasive surgery with the potential for some serious life altering side effects! (My wife still doesn’t understand why I call her ”boss”)
I was in the hospital for 5-6 days, have a zipper scar from my chest bone to below my navel, and I was out of work for 3 months. I had a great surgeon, Dept. Head at U. of Penn Hospital, Philadelphia, PA, and there were no complications.
Well, they told me, ”nope, didn’t find anything, the cancer didn’t spread” and my response was ”gee, thanks for the scar! Always wanted one like this! (Just kidding)”
I eventually returned to my martial arts training about 4 months after surgery, on a limited level and full training a month after that.
I also ride a motorcycle, a large, heavy touring bike. About 5 months after the RPLND surgery I got back on the bike and started riding again, short hops here and there, just to feel normal again. My riding buddies asked if I was okay riding given that I just went through a bout of testicular cancer, never mind the tenderness in the abdominal area from surgery. I told them ”yep, I still ride, but I had to readjust after having lost my right testicle to cancer, found that the bike tended to lean to the left!
It’s been 7 years since having been diagnosed and treated and I am glad to say that everything is fine! My wife, ”the boss” has been very supportive throughout the entire episode of cancer, and a great wife overall. What my wife has done for me during this period was nothing short of pure love! There were some issues/complications during recovery at the hospital and my wife made sure I got the best of care, actually going toe to toe with the hospital staff! At home, there was no need for a visiting nurse, my wife was there taking care of everything! She took time off from work, and when she did return to work, she would come home during lunch to check up on me. I’m happy to say that we are coming up on our 28th anniversary this fall, and I can’t see life without her!
“Memoirs of a 30 Year Cancer Survivor”
We all have a story to tell. A good story has a beginning, middle and an ending. My story has many beginnings and thankfully no ending as yet. My story is of survival, rebirth, finding my voice and finally healing.
Just a few years after Richard Nixon declared war on cancer, I heard those fateful words, “you have cancer”. I was 20 years old and had been married 11 months, 3 weeks and 2 days. I was trying to find my way in the world and looking to start a life with my young bride.
It was June 1975 and I had some nagging groin pain which I attributed to working in construction and a probable hernia. I went to the emergency room to get checked out but they could not find anything and recommended I see an urologist. I for the most part ignored the suggestion as I really did not want to see a doctor but my wife kept pushing me to go. Finally in early August, she made an appointment for me and simply told me to go. That was August 6th 1975 at 3:30 pm. After the usual 20 questions and extremely awkward “drop your pants and let’s have a look”, the doctor looked me in the eye and said “you definitely have a problem Ron”. My heart stopped beating as panic spread through my every fiber.
I was admitted to the hospital the following day and had surgery the next day. A right radical inguinal orchiectomy was performed and later that day I was given the grim news. The diagnosis was “pure embryonal carcinoma with vascular invasion”. I had testicular cancer, a virtual death sentence in those days.
I had not been sick since I was a child and had no idea how to react or deal with the news. The hospital stay was a nightmare as I felt my life slipping away and so totally out of control. I felt like a cornered wild animal scratching and snarling in feeble attempts to regain some level of control of my life and dignity.
I went home after a few days and spent the rest of the week regaining my strength. That week was our first wedding anniversary and for a surprise anniversary gift my wife gave me an 8 track player (yes definitely dating us) and a John Denver tape. I excitedly set up the system and plugged in the tape. The very first song to play on that system was “Lady”. For those of you that are unfamiliar with the song, it says “did you think our time together was all gone” and goes on to say “our time has just begun”. How prophetic that truly was!
After a week, the doctor’s office called and said I needed to come back in and discuss my prognosis and future treatments. I agreed rather expecting it would be “take two of these and call me in the morning”. Apparently my urologist didn’t quite see it the same way. He sat me down and proceeded to tell me I had a 50% chance of living 2 years and a less than 10% chance of seeing my 25th birthday. He told me he knew of ONE patient with my pathology that lived!
Needless to say my head was spinning, I could hardly breath and my short life passed before my eyes. I went home to my wife having no idea what the future would hold or even if there was a future. I don’t think I even told my wife the specifics the doctor had conveyed to me, just that the prognosis was not good and that he wanted me to go to a major cancer center at either Dartmouth or the Mayo Clinic.
Somehow that evening I became a survivor determined to beat the odds. In fact I became so focused on surviving and having a future I never again even considered I would not live! Perhaps it was inner strength or denial or naïve or a combination of all of it, but I somehow found the strength to deal with the coming months of surgery, chemo, poking and prodding and maintain some level of sanity and will to live!
The same focus, determination and denial caused me to shut my story inside. I told no one. I had a dear friend of more than 20 years that did not know my cancer story. Cancer was not something anyone talked about then and especially a young man with a sexual component or connotation! It wasn’t until I faced the 30th anniversary of my diagnosis and my 50th birthday that I finally began to think back about what I had been through all those years ago. I contacted the doctors, oncologist and hospitals and asked for copies of my medical records and proceeded to sit down and read them. It brought back so many emotions I had locked away deep inside. For the first time I really saw the fear, panic, shame, heartache and the pain I locked away. The scars both physical and emotional.
I decided to write my story as a way of working through the emotions, a catharsis of sorts. As I did this I began to realize I had not only locked away the specific emotions related to my illness, I had locked away most of my emotions in total. For so many years I had feared that allowing myself to feel any kind of emotion would open Pandora’s box and allow all the pain and hurt and fear to escape. I had in essence lost myself.
Through this process I began researching all I had endured, the surgeries, the chemo, the statistics and slowly became more aware of the greater cancer community of which I had hidden myself away from. I read about so many other survivors including Lance Armstrong and learned of the first LiveStrong Summit is 2006. I had never interacted with another cancer survivor in the 30+ years since my diagnosis. There were no support groups then. The internet was in its infancy and available only to academia and so I was learning for the first time I was not alone.
I applied to the LAF Summit fully expecting to be declined but low and behold I was accepted. My wife (of over 30 years at that point) told me I needed to go there alone. I needed to face my fears and to once and for all learn I was never alone. Not then, not now.
To say that that experience changed my life is one of those huge understatements in life!
I had been miraculously cured 30+ years before, but it was not until I began to interact with other survivors and to share my story that I finally began to heal………….
Survivorship is not about living or dying. It is not about the physical being. It is a state of mind. An acceptance of one’s situation and a determination to live each day to the fullest extent possible no matter how many or few we have ahead.
Survivorship starts the day of diagnosis and evolves and adapts as our situations change. It may mean one thing the day after diagnosis and yet something else 30+ years later.
It took me over 30 years to heal and make peace with my cancer and that only came when I began share my story.
People have told me I have an inspirational story but honestly I only did what I had to do and what allowed me to get through some of the most horrible days. I believe we all have our crosses to bear and that although my experience was no fun, I also know so many suffer so much more than I ever did!
I also know we have no idea how much we can truly handle until we are forced to do so! The strength of the human spirit is truly remarkable and resilient. I said in the beginning my story had many beginnings as I feel I have been granted so many rebirths in my life. I was reborn when I came out the other side of cancer and yet again when I found my voice and finally began to heal through getting involved with other survivors and advocacy.
I did in fact write my survival story which started strictly as a cathartic process intended only for me to help me finally heal. But at the urging of those few individuals I shared it with, it has now been published as a book, “Memoirs of a 30 Year Cancer Survivor”.
I can honestly say that the “fear of recurrence” never really goes completely away, but we do learn to deal with and manage it. I also know today, that if I ever have to face it again, I know I can endure and have found inner peace.
I can only hope and pray that my sharing my story helps someone to know there is indeed life after cancer. There is hope. You are not alone!!