Posts Tagged ‘Survivors’
Blogging – A Good Way to Cope
From the moment my urologist told me “You have cancer,” I knew I was in for a long haul, both physically and emotionally. I learned that my diagnosis would require a painful surgery and recovery (and later found out that it would also entail chemotherapy). I wasn’t thrilled about it, but I knew I could handle pain, fatigue, and nausea for a couple of months as long as I knew it would lead to a cancer-free life.
What was harder for me than any of the physical side effects was dealing with the diagnosis on an emotional level. Much to my fiancée’s chagrin, I’ve never been one to talk about my emotions. Blame it on society, my own stubbornness, or whatever other factor you want to point fingers at, but when it comes to my feelings, you’re not going to get much from me beyond “I’m fine.”
However, handling a cancer diagnosis is far different than getting over a fight about why I didn’t do the dishes for the third day in a row. I couldn’t hide my diagnosis, but I also wasn’t about to sit down and talk about how I was feeling. There’s nothing wrong with that, but I knew I couldn’t ignore these feelings completely.
A few days before my post-op appointment, I began writing down my story from the discovery of the lump to present day. I found the words flowed easily from my fingers, and with every keystroke, I felt a weight being lifted. At this point, I was writing solely for me to help cope. After writing down the details of the discovery and the first doctor’s appointments, I felt less stressed about everything. I figured I would update the Google Doc after the post-op appointment and that would be the end of my brief foray into writing – and my experience with cancer.
Life doesn’t always work out the way you want it to. At the post-op, my CT scan revealed that the cancer had spread to my lymph nodes and that I would need aggressive chemotherapy to treat it. My fiancee immediately started crying, as this was devastating news. Me? I wanted to write.
As soon as we arrived home, I opened up my Chromebook and wrote out what had just transpired. I was able to recall the information and dialogue almost perfectly. Again, I felt as though I was able to work through my emotions by recreating my experience on the screen and adding my own emotions to the story. Perhaps I felt more like I was writing about a character than myself, but this distance helped me to process what was to come.
Chemotherapy was scheduled to begin at the end of November. I realized I could use my writing for a larger benefit than just my own coping. I wanted to go public with my journey, in hopes that it would be a valuable resource for others going through testicular cancer and as a reminder for those who are healthy to do self-checks frequently.
I took much of my story and started a blog: A Ballsy Sense of Tumor. The title was important to me. It had to convey this blog was about testicular cancer and that I would be writing about it in as positively and with as much humor as possible when discussing cancer. While cancer is no laughing matter, my outlook on life meant that this particular chapter in it had to be approached with humor and positivity.
I decided the blog would detail three different aspects of my cancer journey: Chemo Chronicles (posts about my present-day experiences with chemotherapy and general musings about life as a cancer patient), Throwback Thursday (sharing the beginning of my story from the initial discovery up until the start of chemotherapy), and Healthy But Aware (my close friends and family share how my diagnosis has affected them). Cancer doesn’t affect only those with the official diagnosis, and I wanted to give those around me a platform to process through writing, just as I had.
Throughout chemo, I had some good times and also bad moments. Consistently, I would share my honest feelings about how I was handling different aspects of my treatment in my Chemo Chronicle posts. My fiancee would often ask me how I was feeling about different hurdles that arose, and I would say, “I’m not sure. You’ll have to check the blog.” I’m sure she was a big fan of that.
Since launching the blog, I have heard from other testicular cancer survivors, current patients, caregivers, and everyday people about how much the blog has helped them. I’ve heard from those who appreciated learning what to expect from a testicular cancer diagnosis, how to handle it, and those who were simply inspired to do more. For every person the blog has helped, it’s helped me deal with my cancer tenfold.
Writing, and choosing to share with a public audience, has been the predominant way I have handled the emotions associated with my illness. I strongly advocate for anyone handling a life-changing event to write about it. Even if you don’t share it with anyone, it’s another avenue for you to process and work through what is happening. No one should have to keep it all in and writing gives you a good place to reflect. I’m glad I chose to begin a blog and I’ll continue writing even beyond my “all clear” because dealing with the impact of cancer doesn’t end just when you are cancer-free.
Be sure to check out Justin’s entire blog at A Ballsy Sense of Tumor
Cancer The Second Time Sucks More
Finding out you have cancer once, sucks. Finding out it decided to come back, well, that sucks even more.
My first go at this went like many others. I had a lumpy testicle. You can deny, for as long as I did, that you have testicular cancer but ultimately, lumpy testicle=cancer. For two years I was in denial. Didn’t do a damn thing about it. All you ever heard was Lance Armstrong’s situation and mine was NOTHING like that. Had it grown to the size of a grape fruit, I’d like to think I would have gone to the doctor. But no, mine never increased in size. Just a lumpy shape shifting testicle.
I ended up getting that taken care of, AKA, I have one less testicle. I didn’t have good insurance at the time and that is where this story really begins and if you think you might have an issue or just went through all this without insurance, like I did, this is when you need to pay attention.
24 years old, with less then impressive insurance and just had my testicle removed. Needless to say, it cost me a few bucks. As I am typing this, it reminds me to write the check for a CT scan that happen 6 years ago.
I went into debt because of cancer, like many do. I’m a big fan of Dave Ramsey. Not only for his knowledge of personal finance but for his faith he isn’t afraid to share. If you have ever listen to him, “debt is dumb and cash is king”, is a saying you have heard a time or two. This first battle with cancer only put me in debt around $20,000. This is a minimal sum of money for this disease, I know, but for a 24 year old, it is the majority of your annual income. I was lucky enough to have my Urologist be a family friend and everything he did was for free. Surgery included. After surgery, I had one CT scan a week later and everything came back fine.
One year later and now having awesome insurance, I had a follow up CT scan, due to pressure from my then girlfriend, now wife, to check things out. I did it and it came back all clear. My thought process, I had a lumpy ball for two years, nothing happened, I checked it a year later after surgery, I’m good forever. That’s where follow ups stopped.
Boy I was wrong.
February 13, 2015
It is absolutely amazing how things can change over night. One of my best friends, a guy I’ve known for 20+ years was in town and hung out the night before and I felt fine. Friday morning, I woke up pretty early with some dull back pain but thought nothing of it. The morning progressed and the pain kept getting worse and worse. The back pain reminded me of the back pain I had due to the cancer the first time. The pain kept getting worse and worse, all the way to the point that I had to call my wife and tell her to come pick me up and take me to the hospital.
Now let me take a break and give my wife the credit she deserves. My wife, when she was just the girlfriend, was only 21 years old and a junior in college when I first had to go through this. If you are battling this and you have a wife, girlfriend, partner, whatever, holding your hand through this, you are a lucky man. This is equally difficult, if not more, on them.
Back to the story
My wife swoops me up but before she got there, I took the time to WebMD myself and I figured I had a kidney stone. Obviously, the Internet told me so. That kidney stone hurt like hell and caused me to hunch over in the car the entire ride to the hospital. Luckily, my wife works for a hospital and made some calls on the way there and I was able to go in the back door and not have to wait in the ER line. At this point, I was in the most pain I had ever been in, in my entire life. Apparently lying down on the cold hospital floor is frowned upon and gross, I didn’t care, I went full fetal position.
They get me in an ER room and then they drugged me. That was great. What wasn’t great is the fact that they thought it was a kidney stone too and I didn’t need to pee. One test for kidney stones is checking for blood in your pee. Well, if you don’t have to pee, then they have to got get it, via catheter. WOW, that is not enjoyable, especially when they don’t find blood in your pee. CT scan time.
Post CT scan
Hanging out in the room, somewhat drugged up, with the wife and in walks the ER doc. She walked in, closed the door and instantly you can tell she is not looking forward to the news she has to share with us. “There is a sizable mass in your abdomen, pressing on your kidney. Presumably, cancerous.”
Without hesitation, I grabbed my wife, Sara’s, hand.
Sara instantly jumps into “for better or for worse, in sickness and in health” mode and asks, “What do we need to do next?” Clearly upset but being the tough as nails woman she is, she powered though it. I’m just sitting there thinking, well, this is going to be expensive. That sizeable mass was the size of a football. How a football grows inside me without me knowing, I have no idea, but there it was. Pressing on a kidney and making it bleed. AWESOME.
This is why I wanted you to pay attention, if you weren’t before, and you think you might be in my situation. I was ignorant enough to think that after a year, I was scott free, and didn’t have to worry about cancer anymore. Had I continued my check ups like I was suppose to, this would have been caught well before it got the size it did.
The first battle with cancer, no chemo was involved. Just the snip snip.
The second battle I spend 11 days in the hospital and received the first round of chemo there too.
CHEMO ……. SUCKS
If you thought chemo might not be that bad, you are in for a rude awakening. Testicular cancer is super treatable by chemo. But, in order to do so, they literally kick your ass with it.
Wanna feel like you are having the life sucked out of you? Get hooked up to chemo for 5 days in a row. Two bags of chemo, two bags of hydration, 4-5 hours total and a tube hanging out of your chest for those five days too. I forgot to mention, you get a port in your chest. It makes it easier for them to “plug you into chemo” as it’s just under the skin on your chest. Yes, you can tell its there but you get used to it.
I had friend ask me, “ Is chemo like being really hung-over?” No. If you have to experience chemo, it will be like nothing you have ever felt before and not in a good way. I have never experienced anything like it. The actual infusions aren’t that bad. Sure you can taste it in your mouth and you get kind of sleepy, but the five days aren’t the worst part. It’s the days after chemo that tend to be less fun. It’s progressive too. You feel shitty after the first round but you bounce back in two days. The next round, it takes maybe 3 or 4 days to recoup. The following round it takes, 5 to 6 days. My last week was the worst. I went into the hospital weighing 190 pounds the biggest I had ever been in my life. As my brother in law would say, “I was swoll!” Thank God I had that weight to loose. I had always been right around 150-160 pounds post college. Coming to Texas, I put on some weight but mainly muscle, a lot of muscle. I did not weight myself that last recovery week of chemo, that was the last thing on my mind, but I guarantee, I was in that 150-155 ballpark, if not less. I threw up for a week straight and ate nothing for 5 days. Popsicles. Saved my life. You can keep those down. Remember that.
Your hair falls out too.
I loved my hair. I had great hair. I cared for it. I styled it daily.
It’s a sad day when you notice it coming out in the shower. It comes to the point that it’s annoying to have any hair left because everything you rest your head on, tugs at the hair and ultimately pulls it out. Pillows, hats, blankets, and don’t you dare run your fingers through your hair. Just shave it off. It eventually falls out everywhere. And by everywhere, I mean everywhere. Your face is going to swell up too so be ready for being hairless and fat faced.
The worst part of chemo… My vote goes to the sweating
Chemo is essentially a poison. The tumor doesn’t like it but neither does the rest of your body. If you think about it, God went all out when he made the human body. It’s nuts. Your body is going to do its damnedest to push that poison every chance it gets. It is going to come out in your urine and it is going to come out of your pores. Both of which smell horrible but for some reason, my wife couldn’t smell it. The sweats were sooo bad that my nurse in the hospital had to change my sheets nightly because they were soaked from it. Even when I was home, for the five days of chemo, all out patient, I slept on the living room floor so we didn’t have to change the sheets every night. Do you like long showers? I hope you do, they are one of the few things that are actually relaxing. Lay down in the bathtub and let the water just wash over you and the piece of plastic covering the tube in your chest. It makes you feel better. Kinda normal.
The last week of April, I had my last infusion. Thank God that was over and I started to lead a normal life again. We use to live in Indianapolis, for about 4 years. When I went into the hospital and told everyone where we were from they kept asking, did you get treated at IU health, in Indy, the first time. I did not and I am not joking, every doctor asked that. Doctor Lawrence Einhorn, works for IU Health, treated Lance Armstrong, and truly wrote the book on how to treat testicular cancer. Sara use to work for IU before we moved to Texas. Sara, being the amazing wife she is, made an appointment with him, to get a second opinion. Again, you are going to get mad at whoever is lucky enough to take care of you through this, there is no question about it, it will happen. But in the end, you realize that they only want the absolute best for you and they want to do everything in their power, to keep you around. And that’s what Sara did. She made the appointment, booked the flight, rented the car and told me we were going to Indy whether I wanted to or not. She loves me and wanted me to see the best.
Dr. Einhorn was great. My Doc here is great too but his specialty isn’t testicular cancer. There are about 8000 case of testicular cancer in the U.S. every year. There are equally the same number of Urologists in the U.S. This means, each doctor sees about one testicular cancer patient a year. When you toss in it reoccurring, like mine did and the size of the tumor, even less have dealt with it. Lets face it, testicular cancer is a cancer that doesn’t get talked about. It doesn’t take that many lives and it’s really treatable out of all the cancers. But is it still CANCER! We went to Einhorn and he basically told us we were on the right track. He went into more detail with my doctor in Texas and was able to explain things to but both Sara and myself at ease.
The tumor is no longer the size of a football but more like a baseball. It is continuing to shrink and as long as that happens, I won’t need any other treatment. If it does start to grow, I will start chemo again.
I apologize if I scare anyone with the whole chemo talk. It does suck a lot but it does work. You’ll be ok.
If you take anything from this, do your follow ups. No matter what the cost is. This could have been caught a long time ago had I been doing my follow up.
Lastly, I just had my 3-year wedding anniversary with my wife Sara. She has now had to deal with me and cancer twice and she is only 27. I cannot stress how important, loving, strong, caring and helpful she was throughout all of this. She sat there for every minute of every infusion I had. She stayed all 11 nights with me in the hospital. She drove me to every doctor’s appointment. She changed the sheets in the middle of the night after I cover them in sweat. She stayed with me as I was throwing up everything in my stomach. She took care of our home, did all the laundry, all while putting in 50 hours of work a week. I can’t ask for a better wife. I love you Sara and I thank God you are in my life every day.
To those of you battling this, God bless and remember to always smile and laugh, you only have one ball now.
August 12, 1993. This was the date that changed my life forever. In hindsight – for the better. I was 19 years old; one year removed from high school; and starting to live out a childhood dream of being a firefighter. Four days prior, I had played in an all day softball and volleyball game with the neighboring department, so I knew I’d be sore and a bit dehydrated. What I didn’t expect was urinating blood the next day, while at work! The ER pumped me full of NaCl (Normal saline IV) and referred me to a urologist. The appointment was set for 8/12/93. After peeing in a cup, having x-rays, and my “boys fondled” – for what seemed to be an eternity – the Dr. walked into the exam room and told me “Everything is normal with your kidneys…but have you ever noticed that knot on the side of your left testicle?”. (22 years later and I can recall the exact phrasing; even the monotone sound in his voice) Being 19 and embarrassed at the question – or to admit that I HAD in fact noticed – I did what any 19y/o would do…I lied. He told me it might be “nothing more than a cyst” but he would like to schedule me for a Contrast IV and Ultrasound the following week “just to check it out”. The following Friday, 8/20, I had the tests (including a surprise blood draw) and didn’t think much about it for the next 7 days. No one seemed concerned – not the doc; not the nurses. If they weren’t showing concern, then why should I? (Isn’t 19 year old logic great?!)
That all changed on 8/26.
August 26, 1993 was a Thursday. It was overcast, hot, and just enough rain to make it miserable to be outside. I arrived for my 1pm appointment – expecting nothing more than to be told “You’re fine” – to be lead, not into an exam room, but into the doctor’s private office! Thinking that this seemed “odd”, I still wasn’t concerned. The doctor walked in, sat at his desk, and said, “The mass on your testicle is a tumor. You have testicular cancer. The tumor is the size of a walnut…” For the next few minutes I remember watching his lips moving, but didn’t hear a single word that was spoken. I knew what cancer was. Cancer occurred in the brain, mouth, lungs, breasts, etc. Cancer doesn’t…no, CAN’T happen in your balls! My mother and paternal grandmother had breast cancer just 5 years prior, but cancer of the balls is impossible! This is what was running through my mind while watching his lips form words. Once his voice came back into tune, I heard these words: “This is very curable – if we start right away”. He gave me 3 treatment options and told me it was my choice as to which I could choose.
Option 1: Remove the testicle. Once pathology was done, a course of treatment – if any was needed – would be mapped out. He also was quick to inform me that if I was self-confident, a prosthetic testicle could be inserted later. (Now my shattered world was complete. I just got the worst news I had ever received in my short life, and this guy is talking to me about FAKE NUTS! Did he not remember mentioning the word “CANCER” to me just 2 minutes ago?!?)
Option 2: Needle biopsy. After pathology, a treatment course would be mapped out. (I quickly eliminated this option, in my mind. You know how sensitive our “boys” are… You know what a biopsy needle looks like… The later coming within 20 yards of the former can cause a man to commit murder! You all just crossed you legs and grimaced in sympathy.)
Option 3: Do nothing. He then regaled me with the story of a patient that chose this option. The patient was diagnosed at 22…died at 23!
I was 3-1/2 weeks from my 20th birthday…9/23.
Seeing as I had become very attached to living by this point in my life, another option was eliminated and my mind was made up…”Good-bye left nut!”. He told me to go home and talk it over with my parents, but I had already decided. I still took him up on the offer to process everything and told him I’d call the next day with my decision.
I left the office and stopped at the McDonald’s next door and used the pay phone to call my mom, and break the news to her. (Cell phones were around, but not as prolific as today, and cost a couple hundred dollars per month to own – nearly $1 per minute, per call!) Mom took like a mother should – hard. My next stop was work. They took it slightly better than mom; but, it was here that I unconsciously made the decision on how I would handle my illness. After being barraged with tears, hugs, and other sympathies, delivered with the same solemn tone that is normally reserved for funerals, I quipped, “It’s just cancer. What’s the worst it can do…kill me?”. Yes, humor. As morbid as I sounded, I needed to make a joke. My parents were beyond upset. My friends and co-workers were sullen. Someone had to be upbeat for me; and if they couldn’t do it, I had to! A girl I dated in high school played along and gave me this: “You know, cancer sucks! But, you gain a pick-up line…Want to see my scar?”!
Surgery was scheduled for 9/6 at 7am. I was told to rest for the next week, while my incision healed. Some of my friends stayed with me during the day, while my parents were at work. This is where I had a “setback”, of sorts. 2 days, post-op, I asked my friend that was with me if he would go down to the video store and rent a couple movies. He agreed – since it was a block from the house – and was given strict instructions: No Comedies! 15 minutes later he returned with a couple tapes (remember, it was 19930, telling me he got “drama and horror flicks”. The first tape starts to play and it’s my favorite movie…’Blazing Saddles’! As a captive audience, I could not avoid the comedy styling of Mel Brooks…and neither could the fresh, 5-6 inch incision that graced the lower left abdominal/groin region! The “side-splitting” comedy di just that, as I laughed so hard I tore the sutures! Back to the hospital for a fresh set of cat gut! By the way, that guy is still my best friend.
During my follow-up, I was told that the cancer had not spread, but – out an abundance of caution, due to my strong family history – I was going to have 1 round of radiation to my inguinal lymph nodes. The first therapy coincided with the first day of my Firefighter certification training class. I would go to recruit training during the day, and get treatments in the late afternoon/early evening…for 12 weeks. Around week 3, my instructors became concerned with how “sick” is was looking (and just physically sick) and tried taking me to the urgent care. I finally “spilled the beans” and let them know what was going on. To say they were pissed-off would be an understatement! They were, however, overly impressed with my stubbornness and promised not to treat me any different; but, they did keep an extra close eye on me, and when they saw that I was physically “worn down” they would let up on the whole class, just not me. I appreciated that they never let on to the rest of the class on how sick I was. It wasn’t until about 10 years later that I broke it to my “Fire Buddy” (the partner that I had for the 3 months of training) as to what was up! She said that took balls…to which I corrected her, “No…that’s B-A-L-L. Singular, not plural!”
The last 22 years has been non-eventful. Although there has been 2 scares (1 small cyst on the right testicle; and 1 really bad hernia that mimicked the original pain symptoms), I’ve had no recurrences. Thanks to the radiation, I’m sterile, so no kids. But, given the choice between reproductive sterility or a potential re-occurrence, sterility isn’t a bad trade off! (The world is better off without a “Mini-Me”, according to my close friends) I never got the prosthetic testicle – I feared that ladies would be staring at my crotch and saying, “I bet they’re fake”. Frankly, you can’t even tell unless you physically grab my scrotum. For the first 4 or 5 years, I used to “omit” the orchiectomy from my medical history, on annual employment physicals -and watch the reaction of the P.A. or Nurse Practitioner when they would perform the hernia check! I can still get a reaction from those who medical professionals who don’t take the time to read my medical history, even though I’m open about it.
For those who are reading this, and are going through this yourself, or are supporting someone who is battling it, this is my advice: First, Don’t Stop! Whatever you were doing the day before your diagnosis, do that the day after! You are battling it…it is not battling you. It has moved into your house, sleeping on your couch, eating your food, and using all the toilet paper and leaving the empty tube on the holder! By stopping your life, you are condoning it’s actions and giving it permission to stay forever. Your house. Your rules.
Second, Humor. As I stated, everyone that you share your diagnosis with is going to “boo-hoo” you. This depression thick air is worse than the cancer itself. It’s a natural human reaction. We all do it. Let peole “grieve” for you, but let them know, also, that after this initial reaction, there will be “no more” and that you only want those around you that can be strong for you! Also, do something I never did: take a moment and grieve for yourself – albeit, a brief one. I did not, nor have I ever, taken a moment to completely process what was happening to me. I immediately went into “survival mode” and started finding ways to distract myself. Cry. Say, “Why me?”. Then get back to your life. In 2008, I discovered the book “Cancer on Five Dollars a Day* (*chemo not included): How Humor Got Me Through the Toughest Journey of My Life” by Robert Schimmel. It chronicles the late comedian’s battle with cancer and is a great blueprint for anybody battling it.
Third, Confront it. For years, I never mentioned that I had cancer. I was embarrassed that I had a cancer that was so common, I had never heard of it at the time of my diagnosis. Then Lance started riding his bike through France and suddenly, testicular cancer had a face…had a name. Still didn’t have the respect of other cancers, but it was being talked about. I attribute this to being a strictly “guy” disease…and guys don’t talk about this stuff. Then I had an epiphany: My diagnosis pre-dates that I Lance and John Kruk (Former MLB Player and current ESPN Baseball Analyst, who was diagnosed in 1994). I made getting your balls cut-off trendy! Today, I mention it whenever someone says, “Tell me about yourself”. Remember that pick-up line I was given? It has actually worked on a couple women; although, when I mention it to males, I usually get, “Do it and I’ll take the other one off!”. Such violence for offering medical advice that could, potentially, save their life.
Lastly, Never use the term “Survivor” when referring to your successful battle with cancer. I use “Conqueror”! Survivor, to me, gives the impression that it won, on some level. It didn’t win. I WON! It tried to play in my sandbox, with my toys, and I shot it; stabbed it; hanged it; draw and quartered it; placed it’s head on a stick at the city limits; ate it’s lunch; then – for good measure – peed on it! Survivors don’t do those things…Vikings and Attila the Hun did such things. You know…Conquerors!
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!
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,
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.
“One Ball and Two Strikes”
“Ouch…Lynn you can’t jump on my lap like that, I’m telling you it hurts.” That was my reaction that Saturday evening, in late December of 2007, as my wife innocently sat on my lap to put her arm around my neck and give me a kiss. In female language that pain and reaction translated to “You are trying to say that I’m fat, aren’t you?” I still to this day love to hold that over the head of the greatest wife in the world.
That pain proved to be a stage II non-seminoma tumor engulfing my left testicle. The germ cell tumor contained several of the most aggressive types of testicular cancer cells, including choriocarcinoma, embryonal carcinoma and yolk sac cells. According to the pathology report, the testicle and tumor was 99 grams, the size of a large egg and from the time of the ultrasound to the orchiectomy, it had doubled in size in those 6 days. This was clear evidence of how aggressive and serious this cancer can be. Luckily, I studied Health Education at Northern Illinois University and knew how important self-examination was. I was fortunate to catch this extremely early and that was the foundation of my positive thinking.
Having a doctor tell you that you have cancer is one thing but having him tell you that he is going to remove one of your testicles was truly the biggest loss of the day! I could deal with the cancer but to take one of my boys??? “SHIT”…I thought to myself, not me, I was only 27. Now I’m going to be like ESPN analyst John Kruk. Damn, now I’m like 3rd baseman Mike Lowell, the infamous Lance Armstrong or Darren Jackson, a broadcaster of the White Sox. CRAP…. Now I have to think ahead of any situation that might open a window for someone else to make a joke. Which reminds me. Here a few things you must keep in mind when you are around me or another testicular cancer survivor.
1-If you are ever golfing with me and I slice a drive into the rough…Never ask, Hey Hogrefe you know where your ball went?
2-When I hit my second shot on that first hole and lay my 8 iron on the green 10 feet from the hole…Never yell from across the fairway…“ HOGREFE…NICE BALL”
3-When you are sitting at a poker table with me and I’m holding the Ace, King of Hearts and I flop a flush…Never say when the hand is complete… “Hogrefe flopped the nuts”
4-Never when you coach a football game with me…Come into the halftime angry and tell your team to play balls out in the 2nd half….
5-When I am watching a baseball game with you and I ask the count…Don’t be a smartass and reply two strikes and one ball…
All joking aside, this was some serious shit. After that day in January, I had successful surgery to remove the tumor and testicle. The problem was, the two tumor markers in my blood hadn’t fully returned to normal. In other words, somewhere in my body there were still some looming cancer cells. The plan was to monitor the levels for the next 6 weeks to see if the counts would return to normal. I still remember giving blood often on Thursdays for those six weeks and then eagerly calling the office the following Monday to hear the results. Unfortunately, the news on those Mondays was never the news we wanted to hear. Finally, when the 6th week approached, Lynn, the Dr. and I knew it was time to find an Oncologist.
Now it hit me. I was scheduling chemotherapy and looking at the calendar of when to start. My parents had already lost a son to cancer in 1979, the year before I was born, when my 5-year-old brother Jeff lost his battle with Leukemia. I was determined to give my family a victory this time around.
I was excited to get this over with, fight it, beat it and return to normal. And that’s exactly what we did! I underwent 3 rounds of BEP chemotherapy from February-April 2008. As any survivor knows, there were ups and downs during that stretch of time. I have had the opportunity to speak/mentor some other guys that are embarking on the same journey that I traveled. My advice is simple. STAY POSITIVE, roll with the punches, AND FIGHT!
Things slowly began to return to normal that first year. Although my hair came back blonde and curly, it too returned to normal over time! Nearly two years to the day after my last chemo treatment, Lynn and I returned to the same hospital. This time we were welcoming our first daughter Madelyn on April 21st, 2010. PROOF… That all you need is one!
It was on my three year CT scan in April of 2010 that we encountered another hiccup. I was informed that my CT scan showed two enlarged lymph nodes. As it turned out, there was a type of cell in the original testicular cancer that doesn’t respond to chemotherapy. This cell is called teratoma. Now teratomas are good in the sense that they do not metastasize, in other words they stay to themselves. On the other hand, they continue to grow, could turn into other types of cancer and need to be removed. The lymph nodes were located adjacent to my aorta and near my spine and would require obvious invasive surgery to be removed. Lynn and I started the journey to find the right doctor to perform the Retroperitoneal Lymph Node Dissection (RPLND).
Our first trip was to Indiana University. We all as testicular cancer survivors should be proud of the facility that is located there in Bloomington. It was there I was able to meet Doctor Lawrence Einhorn, one of the men responsible for creating the chemo concoction that helped save many of our lives. What a powerful moment it was to say, “thank you” to a man responsible for helping save your life. This was a fantastic place but I chose, however, to have the nerve sparing procedure performed closer to home at the University of Chicago by Doctor Scott Eggener. I can’t say enough about him and the staff there at the University of Chicago. I was not prepared for how painful this surgery proved to be. But like chemotherapy, I attacked it, beat it and returned to normal over time.
There are so many people to give thanks for all the nice gestures over the past 4 years. My loving wife and family, my caring friends, my co-workers and second family at Fremd High school, my doctors and nurses, my instructor at Northern Illinois University who demanded we self-exam, the list goes on and on. The people who I feel deserve the most thanks are those that have donated to research over the years. With the help of these selfless people, our road to recovery was so much easier than those who went through the same thing years before I did. It is that reason that I feel the need to pay it forward. This year, the 4th annual “1 Ball Pub Crawl” will be looking to eclipse $45,000 raised for cancer research and awareness. We always love to have fellow 1 ball survivors and their friends to share in the fun. Mark your calendars for Sat June 23rd 2012 in Chicago IL.
Join the fight, help raise money and raise awareness in the fight of all types of cancer!!!!
“Cancer may take our hair and our balls, but it can’t take our sense of humor or our spirit” -Jason Hogrefe
Third Annual One Ball Pub Crawl 2011