June 19, 2016No Comments

#MensHealthWeek Survivor Story – Scott Mitchell

Happy Father's Day

My name is Scott Mitchell and I'm currently 39, diagnosed at age 20. I don't remember the exact name of the cancer but it was a rare form of juvenile TC. The surgeon said that I was the third oldest person in the world to be diagnosed with that cancer.  He also told me that the removed testes had been sent to a government base for testing and he also asked my permission to write a medical journal entry about it as it was so rare. I don't know if that ever came to fruition or not.

My story begins with feeling a lump in my right testes when I was showering one day in college.  After a week or so, I could feel it getting larger.  I went to a doctor who sent me for tests and it came back negative.  I was only semi-relieved as I knew something wasn't right.  I waited for another month out of pure denial as it grew bigger. Finally, once it got to almost the size of a half baseball I sought out a specialist that was recommended to me.  I will never forget that appointment, the doctor had me lay on the table pantless with my legs up and spread in a type of stirrups. He examined me,  said "I'll be right back." He left and returned with 6 doctors,  male and female to look at me. I remember hearing "wow" and " oh my" by a few of them. I had never felt so humiliated in my life.  They left and my original doctor told me that I was going to have surgery in two days to remove it. I was scared to death,  I was an athlete in high school and besides a few injuries I had been completely healthy my entire life. How could this be happening to me is all I can remember feeling.  Then came all the emotions; fear, anger, denial, confusion, guilt, embarrassment, worry, despair,  did I do something to deserve this? How am I going to tell my parents? My brother? My friends? I was in a fraternity,  how would they handle it? How am i going to do this?  So many questions and no answers.

The surgery went well, no real issues. I recovered in my apartment and my family and my brothers took such great care of me. They responded so much better than I thought they would, that made everything a little better.

At the point where people were finding out, I was getting mixed reactions,  people were helpful, sad, encouraging,  but the worst was the pity. That was the moment when I decided that cancer wasn't going to beat me.  Screw your pity.

After healing from that surgery,  I was sent to Albany, NY, which was 4 hours away from home, for a lymph node dissection to ensure it hadn't spread. I was in the hospital for 8 days recovering and left with 85 staples down my stomach. To this day,  I've never been in that much pain.

After healing from that surgery and all the testing I had to have another surgery to remove a lump that was found just below my larynx.  It ended up being an enlarged gland but it was yet another surgery to endure.

After healing from that,  my port catheter was put in and I started chemo.  By the end, I completed 27, full 40 hour weeks of chemo.

My oncologist and all of my nurses were amazing to me and everyone else in the unit.  I still think of the older woman that was in the chair next to me for months, Shirley.  She taught me the most important lesson of all,  to stay positive no matter what the circumstances.  Despite the awfulness of what we were going through,  she was always joking and making everyone laugh. She almost made it enjoyable to be there, almost.

During that year, I insisted that cancer wasnt going to hold me back so I stayed busy.  I worked full time when I wasn't on the unit as a conference services manager for a local college,  I was a substitute teacher in the high school and coached modified football and girls softball.

Once I finished my last round of chemo,  I had my port removed and 10 days later I was back in college to finish my degree.  Still bald and bloated from the chemo it was quite a transition.

During college,  I met the love of my life and my future wife, Jamie. The only doubt I had remaining was my ability to have my own children.

My wife and I tried for almost two years to become pregnant, which made my doubts that much worse.  Fortunately,  we were able to conceive naturally and now we have our 15 month old son Parker Scott.

What I really want people to know about TC is don't be embarrassed if you think something isn't right, get checked out asap. There's nothing to be embarrassed by or ashamed of. It's your body and your life, not anyone else's.

For everyone going through treatment,  a positive mindset is the only way to survive.  We can't let cancer win,  physically or mentally. For all of the hurt, pain and suffering,  cancer has made me a better person and I appreciate life a lot more and don't worry about the petty things.

June 18, 2016No Comments

#MensHealthWeek Survivor Story – Gabe Barcenas

A Message From One of Our Speakers Bureau Members

My whole saga started innocently enough. I had back pain. I like to think of  myself as a macho guy, and therefore i contributed the pain to my manly workouts. Yep, that was it, I must have torn/pulled a muscle while lifting weights.  

Well, the pain never subsided, so i took the next step and went to see a Dr. The Dr. at the point agreed, it must have been a pull/tear. I was given some pain medicine (not the good euphoric kind unfortunately) and was sent on my way. Unfortunately, that was not the end of it. For three weeks I struggled through significant pain. I was taking the useless pills, I was ice packing it nearly 24/7, I was see a chiropractor 2/3 times a day, and I was still waking up each night.....crying and in the fetal position.  

After 3 weeks of this, I went back in. At this point, I noticed that of my balls was swollen, again...naturally I thought this must be a hernia, at least that's what I told myself. 

Needless to say, it wasn't a pulled muscle, it wasn't torn tissue, and it wasn't a hernia. The Doc sent me down to get an ultrasound, he had thought that I had 'twisted' something down there. About 3 mins into the ultrasound, and I was sure something wasn't right. The length of time it was taking as well as the look on the technicians face gave away that something wasn't right. He asked if he could go get the doctor, and the fear of the unknown became a crippling feeling. A few mins after the doc came in and started his own examination he stated that i should follow up with my primary care Dr in the AM.....no way was that gonna fly with me. I demanded to know what was wrong.......that's where it all went wrong, those words hung out like it was going in slow motion on a bad, old, scary movie - 'YOU HAVE CANCER'.  

What came next was a flurry of new Dr's, test, appt's, and surgeries. I went from diagnosis to ball removal, to 9 weeks of chemo in the blink of an eye. A horribly painful, mind screwing, scary, evil eye. It was and remains the worst stretch of my life to date.  

The worst part? The worst part is hindsight. All of this could have/should have/would have been avoided if I had any clue it could affect me. Why didn't someone tell me about the most common cancer in males between 15-34? How wasn't I warned? There were symptoms - if I knew that i should be looking for them this all could have been avoided.

I can only hope that my experience and my story can help someone out there avoid the pain and agony of what I went through. 

You have them, check them - if you feel something, say something.......you are not manlier than Testicular Cancer and neither was I.

June 17, 2016No Comments

#MensHealthWeek Survivor Story – Mark R. Zeiler

1984 - Removal of right testicle and lymph nodes on both sides from bottom of ribs to hips

1986 - Removal of left testicle

Only treatment has been hormone replacement therapy. When test from all the lymph nodes came back negative I had no further treatment. Was monitored very closely over the next 3 years. Now just yearly check ups.

TC can be one of the most curable cancers if we can overcome the stigma that surrounds the subject of personal inspection of ones testicles. And if a lump is detected to get immediate tests done.

June 16, 20162 Comments

#MensHealthWeek Survivor Story – Ronald Bye

Diagnosed August 8, 1975

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 39+ 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 voice helps someone to know there is indeed life after cancer.  There is hope.  You are not alone!!

June 15, 20163 Comments

#MensHealthWeek Survivor Story – Jason Greenspan

My name is Jason Greenspan, and I am a Testicular Cancer survivor.

In May 2012, I was 18 and in my senior year of high school. I already applied to colleges and got accepted to many of them. The one I chose was Shippensburg University. I had just finished planning for my prom. In my friend group, I am usually the one who plans everything! Planning for this was enjoyable, but also a challenge. I already had the limo reserved, made the schedule, and was ready to have the time of my life; but little did I know that my life was going to change in an instant.

Testicular Cancer is one of the most common cancers in men between the ages of 15 to 34, yet there is almost no awareness of it.

About a week before my prom, I was at home, watching television and had a simple itch. That itch ended up being the most important itch of my entire life. I noticed something hard—something I did not remember feeling before. Clearly, something was not right. It is difficult to describe, but I had this gut feeling that it was something horrible. I went upstairs to my mom and told her. She said to try not to worry too much about it, but she would make a doctor’s appointment. Within a day or so, my mom and I went in for my doctor’s appointment. He checked me. Then, he said the words that I never thought I would hear: “YOU HAVE CANCER.” There was so much running through my head. I tried my best, but a couple of tears ran down my face anyway. Without knowing about this type of cancer, the first question I remember asking the doctor was, “How long do I have?” I started to remember random events in my life, from when I was a child, up until that moment. I wanted to cherish those memories because I feared there would not be many more.

After reading more information about Testicular Cancer, I quickly realized that it is a very curable cancer if detected early. I later found out the type of Testicular Cancer I had: Stage IIA Non-Seminoma, which was detected early.

Immediately, I had to start thinking about my treatment. After having an ultrasound and taking several blood tests, I met with my urologist, and he informed me that I needed to have surgery. I never had surgery before. I was terrified. I remember dreading that day!

The morning of my surgery, I went to the hospital, got checked in, and sat in the waiting room. My family was with me as well: my grandparents, mom, uncle, stepdad, and step-brother. It was amazing to have all the support that I had! Fortunately, the surgery did not take long, and I was able to come home later that same day.

After having my surgery, I thought that everything was okay, and my nightmare was finally over! It turned out that the worst had not even started. After taking various tests such as X-rays, CT scans, and more blood work, I found out that the cancer had spread. At this point, I had to think of further treatment.

I had to meet with many oncologists until I found the one that would be the best fit for me. The one I chose is phenomenal. He told my mom and me what would be happening and how to move further with my treatment. I needed to have nine weeks of chemotherapy. I could not believe it!

The first thing that I always think of when I hear the word “chemo” is hair loss. I could not imagine losing my hair. It is something that has always been very important to me, and everyone who knows me knows that. That was my biggest fear of the entire experience; well, in the beginning at least.

My first day of chemo was okay. I remember walking in, sitting in the chair, getting hooked up, and asking my mom, “This is it? Chemo won’t be hard!” I later found out that this statement would be far from the truth. Yeah, the first day was not terrible, but that was only the first day.

The entire chemo experience is something that will haunt me forever. I would go into chemo each day during the first week, one day the second week, and one day the third week. That was considered one cycle. My treatment consisted of three cycles.

On the first Friday of each cycle, I would throw up. This was now my biggest fear.

Towards the end of my chemo treatment, I needed to have an enormous amount of pricks from the IV needle each and every day I was there. I could be pricked up to 6 times on a bad day, but still usually around 2 or 3 times even on a good day. Unfortunately, this happened because after having chemo for so long, the nurses were not able to get a straight path with the needle, compared to before, for me to receive my treatment. I remember one day when I was sitting in the chair, the nurses were trying to get the needle in my arm for me to receive my treatment, and it was so bad that it must have been at least eight times! All I kept thinking to myself was, “Why me?” That day was the only day during the entire nine weeks that I cried, at my treatment facility at least. The only thing on my mind was going home and hoping to end this terrible nightmare.

All of the nurses at my treatment facility were wonderful; however, they actually could not see me most of the time. Whenever I went into the chemo room, I would always put my hood from my sweatshirt over my head—far enough so that my entire head would not be visible. By doing this, it helped me so I would not be able to look around, which got me sick. Every time I would see an IV bag or a person in one of the chemo chairs, my stomach would start to hurt. I joked later, that if I went to visit the nurses after I had completed my treatment and was feeling better, they probably would not even remember me because they were never able to see my face!

The entire cancer experience has allowed me to meet many amazing and inspiring people. I was able to meet other cancer survivors, caregivers, and other people who were affected by cancer in some way.

June 14, 2016No Comments

#MensHealthWeek Survivor Story – Mike Stapleton

I am an Advanced EMT for Beaufort County EMS. I am a husband and Father of three ages 6,4,and 2. I had just accepted the job and preparing to move my family from Augusta, GA to Beaufort, SC. I started noticing some pain while I began the new job. I figured since I'm constantly bending, pulling, lifting, I just pulled something. Moving day came and we loaded the truck and unloaded it without any problems. The next day, I could barely walk. "Righty" was so swollen and painful that I had to sit in the bathtub with ice. A couple of days went by and I just couldn't take it anymore. I went to see a doctor.

During the exam he stated that I need to go in to the hospital for an emergency ultrasound, labs, and CT. By this point I knew what it was. I had to make an appointment with a urologist and surprisingly they wanted to see me the next day. Two days after that appointment, I was going into surgery for a right radical Orchiectomy. My CT came back clear and we thought that it was over. I was healing from surgery and had made a follow up with an oncologist. At that appointment he decided for a baseline PET scan. I went in for the scan a few days later. The second round of bad news came shortly after that. The PET scan showed a cancerous lymph node in my abdomen resting near my aorta. I went into surgery to remove that lymph node after a failed needle guided CT biopsy. After surgery, I went in for another surgery to place my port. I can remember the first few days of having the port in place. My daughter was sitting with me and accidentally hit it. It hurt so bad I saw stars. I went in for a pre chemo evaluation and eventually started EPx4.

My first round started as planned. I had severe ringing in my ears from day one of treatment. I felt sick, weak, and tired. It was close to my daughters 1st birthday and we had a lot of family and friends down. That's when the fever hit. It was a weekend and my oncologist was not in office. I ended up going to the ER. The doctors told me that I was critically neutropenic and had sepsis. My WBC was so low that I needed constant IV antibiotics. I spent 5 nights in PCU (one step below ICU). After being discharged I continued to fight through my chemo regiment.

The fight was difficult and I wanted to stop every day. My wife and kids stood by my side and made me fight even harder. I have never felt that bad in my life. After finishing chemo, I started back a month later working on the ambulance and saving lives. A month after that I was told that there is no evidence of disease and that I'm in remission. This month marks my 1 year mark. I go in for a PET, CT, and labs July 6th. I continue to try and spread the word of early detection and TC throughout our EMS/Fire and police community. I am also active in groups such as TCC.

June 13, 2016No Comments

#MensHealthWeek Survivor Story – Larry Hughson

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 2016 will be my 4th 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!

April 27, 2016No Comments

#KnowYourBalls Survivor Story – Connor O’Leary

A Different Kind of Challenge

If you watch the CBS TV show The Amazing Race, you may recognize me as the winner of Season 24. But before I even began that incredible challenge, I had already endured another challenge—testicular cancer.

At the age of 19, I was living and racing in Europe with the USA National Cycling Team. Everything was great. The team was doing well and I was enjoying traveling and living abroad. But as time progressed, my performance started to decline. I started to get fatigued and I had some discomfort. I was frustrated and couldn’t understand what was happening.

Nonetheless I continued training and racing, sure that whatever was going on would resolve itself. But the discomfort turned into pain. I ultimately decided to return to the States and see a doctor. The last thing on earth I expected to hear was: You. Have. Cancer.

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It totally caught me off guard and didn’t feel real at first. In an instant I went from this bulletproof 19-year-old kid to meeting with doctors, scheduling surgery, and figuring out treatment options. I was absolutely shocked. I had no idea I was even susceptible to this disease at such a young age.

I quickly had surgery, and with elevated tumor markers and signs of the disease spreading, I started three rounds of chemotherapy shorty thereafter.

The infusion room at Huntsman Cancer Institute (HCI) became my new best friend. For seven hours a day, five days a week, I would watch the chemo drip into my port.

It wasn’t until the second week of chemo that it really sunk in that I was sick. I woke up one morning, looked into the mirror, scratched my head, and watched as a clump of hair fell into the sink. My mom, who was standing in the doorway, broke down and cried. It was real. I was sick. I was a cancer patient.

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It was an incredibly hard few months, but those months taught me a lot about myself. As cliché as it sounds, it really put my life into perspective. It wasn’t easy, but through hard work, determination, and a new outlook on life, I eventually got back to the top of professional cycling, as well as other endeavors like the The Amazing Race. I am now living a full and healthy life. I feel extremely blessed to have had the support system of friends and family, world-class nurses, and an incredible facility like HCI to help me endure my cancer experience.

My story is all too common. We have young men diagnosed daily that are oblivious to the disease. To see that men are dying every single day from a disease that is highly curable is frustrating and heartbreaking. I very well could have been one of those statistics and I feel lucky I went to the doctor when I did.

I am grateful to be on the other side of the disease working hard as an advocate with the Testicular Cancer Foundation. Having the opportunity to work every day with survivors, patients, caregivers, and the public is humbling and incredibly rewarding. We need to increase awareness. We need to let young men know that they should know their own bodies and be aware of testicular cancer symptoms. We need to tell them how important it is to see a doctor every year for a routine physical exam or to make an appointment right away if they are concerned about something. It could just save their life.

To learn more about testicular cancer, visit HCI’s website or contact the Cancer Learning Center. You can read more about Connor’s adventures on his website, The O’Leary Theory.

 

Connor O'Leary

connor@tcancer.org

April 25, 20162 Comments

#KnowYourBalls Survivor Story – Michael Sileno

I'm Fifteen Years Cancer Free

This year marks the 15 year anniversary that I've been cancer free.  I received my last chemo treatment sometime right before Christmas in 1997.  I wrote this documenting my experience during the time I was going through this at 17 years old during my senior year of high school.  I'm copying it below in its original form.  Some of it is not accurate, such as being sterile.  That's not true anymore and not due to a miracle either, as I stated.  I want to make it obvious that I didn't mention God or religion on purpose.  I came to terms with my beliefs before the time this happened to me and got through it just fine being who I am.  I shouldn't have to say this, but I read so many stories like this giving all credit to some thing else other than the person going through it, those supporting them, and those treating it based on scientific research/knowledge.  It's like a "who can pray the hardest" contest that is counter-productive.  If that's what gets you through great, but I didn't need it and still don't.  I'd rather converse, be hugged and kissed by real people, but that's just me.  I got/get lectured all the time about it and I think people who feel like I do need to know that it is perfectly fine to be the way you are.  You are still beautiful regardless of what you believe or don't.

I learned a lot from this experience.  I reflect on it often to realize how fortunate I am to have the wife, family and friends that I do.  I am lucky that my family was able to do whatever it took to get the treatment and care that I needed without making tougher life decisions.  After re-reading this I realized that I've always had a potty mouth, I'm a much better writer thanks to years of higher education, I thought I was so punk by spelling thanks and sucks with x's, I always try to use humor to make a bad situation better, and more men need to take care of themselves and be open about it.  Get the care and preventative care knowledge you need to make informed decisions about your health.

The picture is from Halloween 1997 in front of the Lizard and Snake in Chapel Hill.  Our band at the time, The Chip-Punx (there's that X again), played a rad show there while I was undergoing treatment.  I needed that and will never forget how awesome it was.  I was lucky to be surrounded by so many awesome people and didn't lay around feeling sorry for myself.  Living life to the fullest is what got me through.  It still does.

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Cancer at 17?

I'm not much of a writer but I guess I should start out with an introduction, so here goes...I don't think the "average" seventeen year old goes around worrying about the threat of a disease called cancer.  I mean they have a lot more other things to worry about like getting through school, boyfriends/girlfriends, jobs, what they are doing this weekend, etc.  The only disease that most worry about is probably AIDS. Well, I know I didn't think twice about getting cancer until I found a "bump" I thought was harmless.

One day sometime back in late March I was just hanging out in the house. I had my hand "innocently" down my pants (o.k. perverts stop fantasizing) and I noticed an obtrusion on my left testicle.  For a guy this is like hitting the flashing red panic button.  I kind of blew it off for a few days thinking it would go away.  I was wrong.  It stayed and so I decided to do something about it.  I decided to approach my parents about it and get an appointment with the urologist.  Well, if you know my mom which I'm sure some of you do, you know she is a nervous wreck.  It wasn't an easy thing telling my parents this especially since my sister had fought off a rare form of cancer about five years ago.  So, the appointment was made and step one was taken.

After the doctor felt me up (this hurt cause the "bump" got sore) he thought it might be some inflammation of the some male part (can't think of the name).  He gave me some pills to take for about two weeks.  Well, it still didn't go away.  The panic button was hit again.  Now, I got an ultrasound of the testicle so they could look at the "bump".  After this and some blood test the doctor ruled the "bump" a tumor.  Now for step two surgery. On April 8th (I definitely remember this day), I was to have my left testicle removed.  It was an outpatient type surgery so I was only there for about five hours (you guys are probably in amazement.  You probably think you would have to stay there for a week!)  There was a little pain and walking was kind of hard but it wasn't that bad.  I went back to school after about two days.  I can still function normally like someone with both of their testicles.  That's a good thing.  The next step was getting follow up checks on the testicular cancer.

Step three was pretty easy.  After the testicle had been removed my blood test came back normal.  This step also required me to get CAT scans to check for signs of spreading.  The tests still started to come back clean and I had talked to another doctor about a possible surgery in which they go in and take out your lymph nodes.  This is a major surgery and I had ruled it out.  I'm glad I did.  They only do this to guarantee non-spreading of the cancer.  Well, we were already monitoring it through the tests and if there was anything shown as a result of the surgery or the tests chemo was necessary.  Why get the surgery and then take the chance of having to get chemo, too?  That's what would have happened to me.  Anyway, until about August my test came back normal.  On my August appointment I had a strange feeling about going to see the doctor.  I felt like something was wrong.  I was right.  My blood markers had gone up which meant that there was still some cancer left to be fucked with.  I think the normal number was like 3-5 and mine went to 9 so it wasn't that much at all.  In fact at first my number was at like 125 or something like that.  It was microscopic but chemo was going to have to be the next step to get rid of this cancer.  It was a hard thing dealing with this a first.  Especially seeing your mother all upset over this.

I remember that day after I found all of this out I drove my girlfriend, Julie (a big reason why I am getting through this so well),back up to Chapel Hill.  It didn't really affect me that much from what I remember.  I think I took and am still taking this well.  I try not to let it bring me down or ruin what good I have.

All of this seemed like some kind of blur because it happened so fast. The first visit with the oncologist was a consultation.  He went over what was going to be done and all that other bullshit.  He said I would do well with it and the only thing would be losing the hair on my head.  I really didn't mind this.  I started to lose it during the end of the first cycle. It freaked me out at first because you could tell it was falling out. Thanx to my dad, Matt, and Mike Gambella for having fun taking me down to the scalp!  I would be monitored throughout the treatment through blood tests and the doctor listening to my lungs, etc.  We talked to a chemo nurse about the possible side effects that might come up.  Because of my age though she said I wouldn't have much to worry about.  The only things that have bothered me are fatigue (I feel tired a lot more than I normally did), I've been sick (nausea) a few times, I get this acid like buildup in my chest sometimes, and my fingernails are gone because I am a nervous wreck.  Sterility has become a problem now, but I didn't plan to have kids now anyway!  I most likely won't be able to later unless some miracle happens and I become unsterile.  The nurse said that I would do fine and she was more worried about my mom than me!  I didn't blame her because so was I. I was now to start cycle one of four on September 30th.

Ever since that first day this has become a routine.  It's like going to school or going to work.  It is a pain in the ass.  I go for five straight days on the first week and on Tuesday the following two weeks.  That is one cycle (a total of seven treatments).  The five day week sux bad.  I go in on Monday and talk to the doctor.  I get blood taken for my blood test and get weighed.  Then as I do every time I go I get my blood pressure and temperature taken.  Then I get stuck with a needle in my arm somewhere and then the IV is started.  On the full week I sit in the chair watching soap operas (my favorite-sarcastic) and dumb shows for about 2 1/2 hours!  It is the most boring time you will ever spend.  I find myself staring at the bags and this makes it longer.  I get two drugs called VP-16 and CIS-Platin.  By the end of the week I feel like shit.  I started to feel better the Monday or so after.  The Tuesday weeks are great because I go in there and sit for about 40 minutes.  I just get a drug called Bleomycin on those days.  I have to watch this drug though because it can burn my skin if a vein messes up.  This hasn't happened but my vein has collapsed about four times.  It doesn’t feel good.  The cool part about going is that the nurses back there are wonderful people.  They really care for you.  The patients there too are really nice.  A lot of them like to talk to me because I am the youngest person that goes to get treatments there.  I am also the only one there right now with testicular cancer.

I am now in my third cycle and am approaching my fourth.  I dread that final five day week.  I know it is going to be rough.  I will finish on December 16th, a week before Christmas.  What a Christmas present that will be!  You learn a lot of shit from this and grow up more from it.  It's like my girlfriend says, "that which does not kill us makes us stronger." She is 100% right.  Attitude is the most important thing in fighting this. Don't let this keep you down.  It is not the end of the world even though it seems like it.  It's hard to stay positive, but you have to do it.

At first I got emotional about having to go through this, but I decided that I need to stay strong and kick the shit out of it instead of being depressed about it.  You go through a lot of hassle and things you don't want to deal with.  I see other people suffer because this happened to me and I wish they didn't have too.  It makes me feel bad that someone is upset over me. I didn't want to shave my head but I dealt with it.  It really isn't that bad now.  I kind of like it, but I can't wait for my hair to grow back. It's too damn cold!

I know this is long and I appreciate it if you made it this far. I just felt like writing this.  Maybe it will enlighten someone or help somebody out.  I am glad that I have the people I do around me that care about what I am going through and worry about me.  That means more to me than you could ever know.  To know that someone cares is a great feeling.  These people are what gets you through this.  I wish I could thank each person individually but there are too many to mention.  You know who you are.  I know that somebody out there has it worse than I do.  I see it every day. It upsets me to see these people sitting there sick and having to go longer than I do.  I wish there was some magic cure for all of this, but there isn't.  I am really lucky because the statistics are behind me.  My doctor says that he has only had one patient with this that the cancer came back and he had it ten times worse than I did.  I think the chance for reoccurrence is like 2%.  Testicular cancer is the furthest along as far as cure goes.  My blood markers have already dropped to normal so I know it is working.  The good thing is that after the rain comes a rainbow.  Boy, am I ready for the rainbow.

If you have any questions or comments please feel free to get in touch with me.  I don't mind talking about this at all.

 

Michael Sileno

michael_sileno@alumni.ncsu.edu

April 20, 2016No Comments

#KnowYourBalls Survivor Story – Steve Heaviside

"Cancer is a life-altering whirlwind of a disease. Testicular cancer, specifically, can be emasculating and difficult. When I was diagnosed in 2013, I had little information and did not personally know anybody who had ever battled the disease. Through surgery, an intense chemo regimen, and a variety of worrying tests and checkups - I really felt like I was on my own. The Testicular Cancer Foundation is not only a platform for me to share my story with you; it is something that has connected me with other brave, amazing individuals who know this struggle. Thanks to the TCF, I have friends in Texas, Illinois, Utah, Connecticut, etc who are all also doing their part to spread awareness, knowledge and understanding of this disease. I wish I had these people to contact when I was first diagnosed. I hope every guy that is diagnosed with TC in the future is aware that this support system and educational materials are there for them.

Cancer's always a difficult journey, but organizations like the TCF make you feel a little less alone, a little less scared, and gives you hope that the future's gonna be a little bit brighter."

-Steve Heaviside

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12600 Hill Country Blvd, Suite R-270 Austin, TX 78738 • info@tcancer.org • 855-390-8231

© 2017 Testicular Cancer Foundation, a 501(c)(3) registered nonprofit | Privacy Policy