Archive for the ‘Survivor Spotlights’ Category
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
Slow Dance Through Here: My Testicular Cancer Journey
It began in early May 2015. I woke up one sunny day to discover my testicle had overnight grown to the size of a tennis ball. I knew something was wrong so I didn’t hesitate. I drove to urgent care that night after work. After an examination and tests, I was told I had a hydrocele and that my tennis ball testicle was nothing to worry about. In what was a tactical error that I will always regret, I let things go there and tried to forget about it.
Soon after, my lower back began hurting. I remember one day, I was helping my father in his yard move lumber. I buckled from the pain and collapsed in the grass. I begged my father to let me go rest but he told me to man up and get back to work. I listened. Before long the pain had diminished.
As summer wore on, the pain in my back increased but I tried to mask the pain with Excedrin back pills. Convinced I just had a hydrocele, I looked into self-aspiration, which involves shoving a needle into your testicle to drain liquid. At the beginning of July, I suddenly had a very hard time keeping down food and began puking after most meals so I began a liquid diet of protein shakes and fruit juice. One day in a conversation with my Dad, I said it was probably cancer then I laughed that notion off. Me? Cancer? Yeah, right.
On July 16, 2015, I went to the ER. I had an ultrasound and ever the consume gentleman flirted with the technician throughout. Scans were taken. I was supposed to pee for a specimen but was having a hard time getting a drop out. Then the nurse came in and told me I didn’t have to pee in a bottle after all and that the doctor would be in shortly. When the ER doctor came in, he told me that a specialist was on her way to see me. When the specialist came, she didn’t dance around with her words. In a soft sweet voice, the specialist promptly told me I had testicular cancer. The cancer had spread to my lymph nodes, lung, and stomach. The specialist told me I would very likely live but was in for the ride of my life. The specialist asked when I wanted to schedule surgery to remove my testicle. I let out a good solid cry for half a minute. Then I stopped. It wasn’t time to cry. Not now. It was time to buckle down and start fighting. So I did. I got my phone and started calling my family and close friends to let them know.
My father picked me up from my apartment that night. My father told me that I would live with him as I fought off the cancer. By now, the pain in my back had gotten so bad that I resorted over the next few days to hobbling around with a cane. I learned around this time that my older sister was pregnant. Some luck, I thought. I was dying and my older sister was bringing more life into the world. I wondered if I would ever see my nephew.
On July 19, I went back to the hospital to have my right testicle removed. I had never had surgery before so I was very bewildered by the process. It turned out, though, that the specialist with the soft, sweet voice was performing my operation. Her name is Doctor Jodie and she would end up going through the whole process with me. I am lucky for that. Doctor Jodie is one of those rare Doctors who can out you instantly at ease.
When I woke up from surgery, I discovered both that my tennis ball testicle was gone and that I was in sharp pain. Pain so consuming and strong I couldn’t move. I arranged to spend time in the hospital. Because my first round of chemotherapy was about to start, I would stay in the hospital for that too. When I was wheeled from the post op room to a hospital room, I was put on a morphine drip. My nurse offered to help me go to the bathroom, but I insisted I do it by myself. When I was done going to the bathroom, I looked at my nurse and said, “There’s something you need to understand right now. I’m tough and I’m a fighter.” Eventually I got off the morphine, which was followed by constipation and a poop from hell.
Even from the start, I never had trouble adapting to only one testicle. Who cares? You can do all the same things with just one. Having one testicle doesn’t define masculinity. Hell, if you ask me being a survivor and going through the process shows you have more than enough guts and balls. I refused to be defined or dwell on the disease even while I stuck in a hospital bed. So that first week I was in the hospital, I read about 30 books. My oncologist even started bringing me books and would laugh and say there was clearly nothing wrong with my brain.
Around this time, I had my port placed in. A port is a small piece of machinery below your skin that allows nurses to stick you there rather than in a vein. Getting a port accessed or stuck with a needle can hurt if the needle strikes a nerve or tissue. But it’s good pain. Eventually you learn how to lean into it.
One of my uncles told me around this time that you can lean into cancer with anger. And it’s true. All your hurt, all your anger can become fuel if you learn how to lean into it just right.
When chemo began, I would flirt and laugh with my nurse. The first night of chemo was easy enough. Four hours. No side effects. After the first round of chemo, I still didn’t feel any effects.
I threw up the first time a week later. After a big meal of fajitas. The vomiting stops becoming an event and starts becoming annoying. You vomit while driving, while walking, while in the shower. It becomes as customary as blowing your nose.
Around this time, I started losing my hair too. My hair fell out in clumps. I could run my hand through my hair and gather a handful. My father buzzed my hair rather than waiting for it all to fall out. I remember thinking that if I died nobody would recognize me in the casket. But then I remembered that I wanted to be cremated and I would be dead anyway so who cared.
Also around this time, I developed a bump under my armpit. Eventually the bump got so bad I couldn’t put my left arm down all the way and had a hard time moving my left arm. Fearing the bump was a lymph node that would require surgery, I found out the bump was just an abscess. I went to see a local surgeon who boiled and lanced the bump.
As soon as I finished my second five-day round, I went to see my grandfather who was dying in hospice. Growing up, my grandparents lived a mile down the road from me. My grandparents cooked for me, spoiled me, and helped with me do my homework. My grandfather was a good man. A north star. You could guide your ship by him. I held his hand in a little, barren room. I talked to him like we were having a conversation, I told him it was OK to go. I was so exhausted I fell asleep beside him. He died the following morning. I went to the county fair that afternoon and blacked out. The next day the girl I was dating broke up with me because I had told her to go if it was too hard. I knew I was in for the battle of my life.
There is a song by ACDC called Rock or Bust. That phrase, Rock or Bust, became my personal anthem. Either you were rocking, going through the hell of treatment, listening to the doctors or you were going to go bust and end up sicker or dead. It became a coded expression between me and my cousin when I was going to treatment, I would text him Rock or Bust.
Going into my third round of five-day treatment, I got my reprieve. I learned that my markers were normal. With that information, I realized I would do whatever I could to claw my way back to full health. I didn’t know I was about to get my biggest challenge yet. Due to a holiday, my oncologist decided to cram my five-day treatment into four days. After all, it was just as effective so why not? On the second day, I threw up on myself. My stepmother brought me a change of clothes and assured me she could save my shirt. I started laughing, I had worn the same shirt the day I had my first surgery, the day I had my armpit surgery, and now. I took off the damn shirt and threw it in the garbage.
I don’t remember much about how I was after the third five-day ride. My Dad and step mom tell me I was bad. All I can remember is my mouth went into some type of crazy overdrive and began producing too much saliva. I read of other cancer patients and pregnant ladies experiencing this nuisance. I was never much of a spitter before but I became one real fast.
Going into my fourth round of chemo, I remembered a significant I had seen summers ago on a church in Tulsa: I am not the potter but the potter’s clay. It wasn’t up to me to decide if I got out in one piece. I was just a piece of clay to be wrecked if necessary. What I could pray for were more tangible things: calmness, clarity, and silence. This made things much easier. The fourth round was worse than the third. I was on a cane by the second day. By the third, I was taking my chemo in a makeshift hospital bed in a spare room of the treatment facility. I could barely stomach the smell of the chemicals so I would coat my nose each morning with vapor rub. I would also bring handkerchiefs dosed in perfume and hold them to my nose. Mentally, I would leave the room when I was getting chemo. I would go back to California I was 24 and driving around the beaches of Malibu. It felt an awful lot like flying.
My father came and sat with me during my last day of chemo. He was my rock. Whenever I felt like I was slipping emotionally or that I had fought as much as I could, I went to my father. He renewed me. I even liked when he would yell at me to put on my slippers or push in my chair. It meant I was still human.
The day after I finished my last day five-day round, I went to the bathroom and collapsed. I was surrounded by darkness. Suddenly I was standing in bright green grass surrounded by a strong breeze. My grandparents were in front of me. I stood there anxious to be recognized. I looked down at my feet as I had no shoes on. I scrunched my toes to feel the grass to confirm that this was happening. I looked up again and my Dad’s mother smiled at me and mentioned to my other grandmother that I was there. My grandfather seemed to have no interest in my visit at all. He was reading a book and said he is not supposed to be here. When I woke up, I was lying on the bathroom floor. I could feel my father’s hand. I couldn’t see anything. I could hear my Dad screaming my name. I could hear my stepmother calling for an ambulance. Soon, I could pull myself up. My father helped me to the couch. Soon after, my father and I climbed into his truck and dashed through our little, desolate town to the hospital.
My father and I sat all night in the ER. When the nurses came to stand up so I could leave, I threw up and almost blacked out again. I got admitted. I wasn’t down for long. By afternoon, I was requesting the pretty nurse. I walked out the next day.
For the next week, I would go the treatment facility and get a magnesium infusion because my levels were low. Eventually, I would do another daylong stint in the hospital to get my magnesium in check.
I developed a cough around this time and had to sleep sitting up or else I would cough fiercely.
I had my scans two weeks later. All cancer was dead. That is, except for one lymph node that was 0.3 cm longer than it should be, which required an RPLND, a surgery in which you are cut open from mid chest to below the navel to remove lymph nodes. I also had to schedule a lung biopsy because my scan revealed an unknown mass on my lungs.
A week later, I had the lung biopsy. I was afraid because I thought it would hurt a great deal. It ended up hurting no more than somebody deeply massaging your back. I put to use my old chemo trick of imagining I was somewhere else and it worked perfectly.
The next day, I left for Florida for a week with my father. I gorged myself every opportunity I had. My father kept asking so and I told him that I would need the weight for after my RPLND. My father laughed and told me I was being silly. Also in Florida, I started instant messaging with a girl I had met on a Facebook forum. We talked for hours into the night about everything. It was good to finally have somebody to talk again. It felt human.
On November 29, 2015, my father and I returned from Florida to Pennsylvania. Something even more important happened on November 29, 2015, I met the love of my life in a little bar in Pittsburgh. Valerie. The girl I’d been messaging. I was not expecting it to happen. In fact, since I had been diagnosed, I felt a lot like a pariah and somebody who nobody would ever love or bother to care for again. She was a kidney transplant survivor, and while she had not seen quite the level of horror as a cancer patient, she sympathized and cared about me. Valerie made me remember that I was human.
I scheduled my RPLND for December 9, 2015. That turned out to be a funny day because thirty years ago to that exact day, my father had his spleen removed.
On December 8, 2015, the night before surgery, Valerie and I sat in a restaurant in Pittsburgh and joked about the whole thing including how I kept running to the bathroom every five minutes due to bowel prep. We had no idea how hard the months ahead of us were going to be. But, we had learned the trick that beat even the worst of days. When things get so bad that we felt like we were going out of our minds, Valerie and I laughed like hell.
On December 9, 2015 around 4:30 a.m. my father and I woke up in the hotel next door to the hospital. I got prepared for surgery and went into the little room. I had a nerve block to help with the pain. I also saw my urologist before I went into the surgery room. She told me she expected the surgery would take around four hours.
I woke up thirteen hours later. I was talking complete gibberish. I cannot even remember what the nurse in the recuperating room looked like. My Dad tells me that I was cracking jokes and laughing out loud. I cannot, for the life of me, remember any of it. As the pain medicine wore off, I discovered my body was more banged up then I expected. In addition to the large wound on my chest, due to the amount of time I had spent immobilized during the surgery, I had huge broken blisters on the heels of both of my feet, it was hard to fully extend or move both of my arms, and my butt was so sore and broken out that I could not lie on it. For the five nights I was in the hospital, Valerie slept beside me in a big, uncomfortable chair every day. Because she had worked all day, Valerie would soon fall asleep and I would stay up all night, in pain, holding her hand. During the days I was in the hospital, I made myself get up and walk because Doctor Jodi said that was the best thing to speed up recovery. I walked even when everything hurt.
When I was discharged, I went back to my Dad’s place for a couple weeks. Those weeks were really bad. Due to the calluses on my butt, I could not really sit down anywhere. Due to how much pain I was in from everything else, I had a hard time sleeping. It took me a week and a half after the surgery before I could sleep for an hour’s length of time. Because my Dad lived an hour away from Valerie and Valerie had to work so much, I did not see her much during this time. Not only could I not sleep or sit down, I also had little desire to eat anything. So for many days, I ate not much more than a protein shake or a single egg.
As days went by and the pain lessened, I began to feel a bloated feeling in my stomach. Once, the pain in my stomach got so bad that I went to the local emergency room and had another CAT scan. I was told that it was not a bowel obstruction. Doctor Jodi was able to figure out that what I had was called chylous ascites, a condition, which is the accumulation of fat in the belly due to a disruption in the lymph node system. I then began a cycle I would repeat for two months: wait until my stomach filled up with fat, go to the hospital, get the fat drained from my stomach then repeat as needed.
Valerie asked me to move in with her at the beginning of January. I told her that I would be a big responsibility. She told me that she could handle it. Valerie drove her car the hour through the snow to pick me up. While she said at the time nothing, Valerie said she was scared when she picked me up because I looked like a skeleton. Except for my stomach, that is. My stomach was full of fat.
On January 9, 2016, when I had been at Valerie’s house for just a few days, David Bowie died. I had always enjoyed Bowie’s music, but it was learning that he had died of cancer that really got to me. There I was, in pain, barely unable to sleep, barely unable to move. The last thing I wanted was to die, though. I would stay up all night, trying to watch movies or read or do whatever I could to take my mind off the pain. Valerie’s ten-year-old pug, Vixen, became my constant companion. When I could not sleep at night or Valerie was gone during the day, I talked to Vixen like she was a person.
Around this time, I had a reoccurring nightmare. I dreamt that I was traveling in Baljennie, Saskatchewan when my truck broke down. I dreamt that I went to an abandoned farmhouse looking for help and fell through a hole in the floor. I dreamt that a four-armed woman came to rescue me and brought me to a room where other rescued people were waiting. Instead of rescuing us, though, the woman crucified each of us in an abandoned cornfield. For nights, I had this dream. Sometimes, I woke up crying because the dream felt so real.
Doctor Jodi decided rather than getting my stomach drained every two weeks, a much better idea would be to take a medicine to help reduce fat buildup and go on a virtually no fat diet. The only catch was this new medicine was only available in injection form, which meant that three times a day for the indefinite future I would have to inject myself with medication. I never minded needles much, but injecting myself was something I did not know I could handle. The first few days were pretty strange and my leg always hurt afterwards, but I learned tricks to beat the pain. Much as ACDC’s Rock or Bust had been my chemo fight song, David Bowie’s song Station to Station was my fight song for this new part of my journey particularly the line: Drive like a demon from station to station. I have no idea what David Bowie meant when he wrote those words, but to me what he meant is that when you are going through hell, go as hard and as fast and as fearlessly as you can. So that’s what I did. Or at least, that’s what I tried to do.
There were a couple close calls in those days. Sometimes, Valerie would find me collapsed on the floor. Sometimes, I was so discombobulated that I could not feed myself. Sometimes, I was so confused from the medication I was not sure where I was. So, Valerie helped me walk. She helped me eat. She held me. She told me where I was. She told me that things were going to be okay. And things were painful and hard for a long time, but slowly life got better bit by bit.
My life became a series of small achievements. One day, I had sex and realized I could still ejaculate. One day, I woke up and my stomach did not hurt. A few days later, I experimented and tried stopping injections. Then I found out that I had stopped injections. Victories came little by little. It was like somebody slowly turning on the lights in a house. One day, I realized I could sit down for longer than ten minutes. Another day, I realized I could walk three blocks down the street. One day, I could chase Vixen up the stairs. One day, I went for a walk and discovered I could walk a few miles. One day, I realized my hair had grown back so much I needed a haircut. Only it’s not the same color or shape or texture, but at least I have hair. One day, I realized I could eat whatever I wanted and I did not gain any fat in my stomach. All of these things made me very happy.
And then my sister’s baby was born. A boy. I had lived long enough to see him. Holding the baby for the first time was one of the happiest moments in my life. I thought about how some day when he is old enough I will be able to tell him this story. If you ask me, I bet he will have a hard time believing it is all true. But, it is.
So, I lived. And I continue to do so. And except for some issues with my fingers, a little bit of hearing loss, and a different type of hair on my head, I feel exactly the same if not better than I did before. I work from home at the moment because I do not have the energy to go to work every day. I just rescued a 7-year-old that somebody tried to light on fire. I named him Chance because that’s what he and I both have now, a chance to keep going. A chance at existence. I intend to make the most of it. I get to spend every day with Valerie and we continue to grow deeper in love. Because she has been with me through the worst of it, I know that Valerie is the only person I want by my side. And while the road back can be hard, I made a friend who is one of the first Stage 3C TC survivors and he is willing to talk to me about all the craziness we saw. He tells me very smart things. At times, it feels a good bit like having a war buddy.
So, that’s my story. I don’t tell it to make myself sound like a hero. I’m not a hero. I’m not any braver, more courageous, or tougher than you. I’m just like you. If there is any difference between you and me, it’s that I had an illness that almost took my life but I refused to lie down. I refuse to stop. I refuse to be defined by my illness. You would do exactly the same thing. I promise.
I’ve been very lucky. And maybe a little unlucky. It all depends on perspective, which depends on when in my story you peek in.
My left testicle swelled. I ignored it. I knew nothing about testicular cancer at the time. Had literally never heard the two words in the same sentence, way back in 1989. I suppose I simply figured I had some weird case of unilateral college blueballs. It was, theoretically, possible. This hypothesis worked for a few days. Until my left testicle hemorrhaged. Which really hurt.
University infirmary to hospital to surgery to “one down, one to go” all within twenty four hours.
The scar was not very big. On my skin. Just a little two-inch horizontal line down there. However, inside, where my selves try to protect me from spiritual pain, where those selves made up stories about why things happened and whether they might ever happen again, I was torn apart. I was terrified.
Soon after my surgery, people gave me books. The books were supposed to help me put it all in a broader, wiser, more optimistic perspective. However, reading them really really really pissed me off. Their gist was: “My cancer was a gift. It caused me to face human frailty, to face mortality, to decide what was really important to me in this life. I wouldn’t trade it for anything”.
I HATED hearing that, at the time. It didn’t give me any strength, it just made me mad. I was twenty years old, and I hadn’t done anything wrong. I didn’t deserve anything that heavy in my life. I was just trying to, you know, make it through college and have some fun along the way. After getting pissed off and deciding that reading books by optimistic cancer survivors was stupid, I basically non-evented the whole thing. Compartmentalized it right out of my life. Every once in a while, when I had to adjust my junk because my prosthetic left nut was bigger than my real right one, I thought about it for half a second, told myself huh, and got back to whatever Things I was Doing.
Jumping back to immediately after the surgery, it was recommended that I do radiation treatment. I tested “all clear”, but the thinking then was that the smart thing was to do the radiation anyway.
I didn’t want to. I wanted to go back to school and get on with life. So, I promised to get blood tested monthly, and get a CAT scan every three months, to give us every chance of catching anything which had managed to hide. They told me if I made it two years there was a good chance I was in truly in the clear.
Two years came. My blood levels shot through the roof. Almost to the day, as if some evil part of me was just waiting until we celebrated the twenty fourth month, before announcing “BOO! You still have cancer!!”
I had a retroperitoneal lymph node dissection (RPLND). This is where it got interesting. Nothing showed up in the removed lymph nodes. They were all clean, all benign.
I had cancer somewhere (or I was pregnant), but not where it was supposed to be. Somewhere else. There was a whole lot of head scratching. Until the other testicle hemorrhaged. At this point I had short horizontal scar, and a very long vertical one (sternum to just above the star of my man show). The good thing about having the other testicle hemorrhage was I could get a matching horizontal scar on my right side, and a matching prosthesis too. Also, my surgical history rolls like poetry off the tongue: bilateral radical orchiectomy. Sounds lovely.
The bad thing about having my right testicle removed was everything changed forever.
I decided not to bank sperm beforehand. I stand by this decision (it was very complicated and belongs in another story), but in the same breath I urge people to do it, to bank some while they can. “You can always not use it” is the obvious, simple logic, and it is sound logic indeed.
The other thing that changed with my body is it no longer made testosterone. I started taking a shot every other week in my butt. I started having two mood cycles a month, which gave me bit of insight into some peoples’ monthly swings. I take the shot weekly now, and have learned to fill in the valleys and knock off the peaks just a bit. That said, my wife Amanda never has to wonder whether it’s “day after shot day”. I’m randier than an eighteen year old on spring break, for a day or two.
Amanda and I have three beautiful and curious professional patience testers, two boys and a girl currently aged 11, 9, and 8. And I am so grateful, and even a little proud.
So back to the cancer and the whole “it was a gift” thing. It takes time to get there, but it’s true. It’s really hard to simulate facing your own mortality head on. When you’re staring straight at the terror of what can so easily veer into a terminal illness, everything slows way down and you can’t help but ask yourself what is important to you.
It’s not a secret. Hearing the words is a great start so I’ll say them here. Family, friends, and Love are important. Authenticity is important. Most of the other things recede and shush right down once you’re invited to know, to really know, that you may just return to dust a little ahead of the schedule you had planned for yourself.
If you have recently been diagnosed with testicular cancer, it’s not going to be easy and it’s not going to be fun. But I promise, in a way that should probably make you a little mad, that it will be worth it, one day.
In recognition of Testicular Cancer Awareness Month, Kevin has made the Kindle version of his book Black Sails White Rabbits available for free on April 4, 5 & 6th, 2016.
“This is a compelling and extraordinary book about a life of extremes. Of mental pain and sporting triumph, of acute despair and a determination to achieve what others take for granted: a settled family life with a wife and children who love him. It’s a jagged ride, funny, romantic and agonizing. And like all the best art, it’s honesty is cathartic.”
– Philip Delves Broughton, New York Times bestselling author of Ahead of the Curve:Two Years at Harvard Business School and The Art of the Sale
More About Kevin Hall
Kevin A. Hall is an Ivy League graduate of Brown University, where he earned a bachelor’s degree in mathematics and French literature. Despite being diagnosed with bipolar disorder in 1989, he went on to become a world-champion Olympic sailor, as well as racing navigator for Emirates Team New Zealand in the 2007 America’s Cup match. A two-time testicular cancer survivor, Hall has spent a successful 25 years as a racing navigator, speed testing manager, and sailing performance and racing instruments expert. A brief version of his story was featured in Joel and Ian Gold’s book Suspicious Minds: How Culture Shapes Madness, as the only non-anonymous case study of a patient with Truman Show delusion. Hall’s first book is the memoir Black Sails White Rabbits; Cancer Was the Easy Part (December 5, 2015). He currently lives in Auckland, New Zealand with his wife and their three children. For more details, please visit www.kevinahall.com
Watch Aaron Louison through his 9 weeks of chemotherapy and then read his reaction about his first post chemotherapy scans.
My doctors were pessimistic about my first follow-up scan after 9 weeks of chemo. Because my testicular tumor was not pure carcinoma and teratoma was present, it was quite clear to them that chemotherapy would not be the only solution to my cancer.
The last thing I wanted to do after going through chemo was to have an RPLND (Retroperitoneal lymph node dissection), short for a maximally invasive surgery, which would suck. At least on my worst days of chemo I could walk and I wasn’t in pain. From what I heard post-RPLND, the pain would be so severe that I wouldn’t be able to walk for a few days, I’d be in the hospital for at least a week, I’d be on an drip of pain medication, and I’d have a nasty scar down my stomach. Not that I ever had six pack abs before, but a scar wouldn’t help.
A lot of people would rather have a surgery than chemo. I was the complete opposite. I did not want a surgery. At all. At least the chemo will wear off. After a surgery, I’d have a scar in a not-so-hidden place. All that I had been left with after chemo was a bald head (which will grow back) and two collapsed veins in my arms (which will get better).
I did not want anything permanent to result from this experience. It was going to be a chapter in my life that was kind of crappy, but that would be it. Once it was over, I’d go back to my life like nothing ever changed, just that funny memory of when I was in the hospital for 9 weeks because my balls hated me.
But, if I needed the RPLND, I wouldn’t fight it. I’d ask all the questions I’d need to ask, fully understand what the problem was, why exactly this was the right solution, and get as clear of a picture as to what I would expect before, during, and after the surgery. After all, I’d already gone through so much, what was one more little surgery?
Before I could find out if my abdominal lymph nodes were clear or not, I had to find out if my other testicle would hang around for the long-term. The first ultrasound that detected cancer in my right testicle also found an unknown mass in my left testicle. While they couldn’t clearly say it was cancer, the doctors said that given my circumstances it was enough to be wary. While it is rare to get testicular cancer in the first place, it is even rarer to get it in both testicles. However, they told me that for someone who has had testicular cancer once they have a greater chance of getting it a second time than someone who has never had it at all.
Since they weren’t sure what was going on in my left testicle, the plan was to scan it again after chemo to see if anything had changed.
On the day of the ultrasound, I was met by ultrasound tech Stacey, who didn’t know that the scrotal ultrasound she was performing was being done on my scrotum. No, she wasn’t trying to scan my testicle from my ankle, she just thought the noun for scrotum was “scrotal.” “Please put your scrotal on the towel,” she said. At least she inadvertently got a chuckle out of me before I’d find out if I’d be without balls for the rest of my life.
After she finished her scans, in walked the boss-lady. “The pictures look very good,” she mentioned quietly. Confused, I asked, “Wait, do the pictures look good? Or, what the pictures show looks good? Because there’s a very big difference. You can paint a beautifully accurate picture of a tragedy, and it’s still a terrible image.” Boss-lady responded after thinking for a moment about my question, “Both. Both the picture and what’s in the picture look good.” PHEW.
Boss-lady went on to show me images of the ultrasound which clearly showed no significant markings, masses, or questionable curiosities. “Clean bill of health, at least from me,” she said as I was ushered out of the room.
After an uneventful CT scan I then had to wait two days before meeting with Dr. Pomerantz at Dana Farber for the long-awaited answer to whether my lymph nodes were clear or not.
Depending on the cellular makeup of my lymph nodes, either the chemotherapy would be tremendously successful or it wouldn’t. If too much teratoma were present in my abdomen, the chemo would not be able to clean them out completely. Meaning, RPLND, or “suck” for short.
Months prior, I learned that Dana Farber as an institution airs on the side of caution when it comes to surgery. Their medical theory is that it is only a good idea to operate if it’s abundantly clear that it is necessary. Dr. Pomerantz touted their data to say that if lymph nodes are less than 1 cm in diameter post-chemotherapy, than the likelihood for cancer’s return is very, very low.
So that was the goal. Less than 1 cm in diameter. Before beginning chemotherapy, my lymph nodes measured around 2.5 cm. After a chemo regimen like mine, a pure carcinoma would be wiped out. But since I got to enjoy a mixed germ cell tumor, there was a cellular party going on in my body, and everyone was invited; the fat idiot called “teratoma” and even the boring “yolk sac tumor” got to show up for a bit of fun.
I sat in the doctor’s office waiting with my dad to hear the news from my doctor, good or bad. Before we had too long to think about it, Pomerantz’s oncological fellow came in to deliver the news: “We are pleasantly surprised with where you are, and did not expect this kind of result. You responded much better to the chemotherapy than we thought you would and your lymph nodes have shrunk almost completely. Of the three enlarged lymph nodes that were each around 2.5 cm in diameter, two have vanished completely, and one is around 0.9 cm.”
I had built myself up for the worst, expecting to hear that I needed the suck, and the only response I could muster up was, “so this is good news?” The fellow, with a laugh, answered, “Yes, very good news.” But he went on, “However, since your remaining lymph node is 0.9 cm, it sort of puts us in a medical gray-area. Normally, we operate on any patient whose lymph nodes measure at 1 cm or greater. You’re on the cusp of needing surgery, and in times like this, we leave the option open to you; either we can go ahead with surgery or not, it’s up to you, and either choice is a good one.”
This was not expected. The entire process up until now I hadn’t been given any choices. It was clear cut to every doctor I saw: I had cancer, I needed a testicle removed, and I needed to begin chemotherapy immediately. There were no choices, because it was very clear how to cure me. But now, there was uncertainty. Given this uncertainty, it was my opportunity to take things into my own hands and make my own decision, “No, I don’t want surgery.”
“Okay,” the fellow replied, “However, this doesn’t mean you’re in the clear just yet. Because you are in this medical gray-area, we have to be much more wary than we would on another patient. We’ll have to perform our next CT scan sooner than we normally would. We have to watch very closely, and if anything changes, even a little bit, we’ll have to move ahead with a surgery. If that lymph node grows before the next scan that means there is cancer left and we have to remove it.”
In walked the boss-man, Dr. Pomerantz to offer his concurring opinion and to explain some of the statistics going into this decision. “Based on your situation,” he said, “if we were to open you up in an RPLND there’s a 75% chance that we’d find nothing. That your lymph nodes are enlarged but they are empty. There’s a 25% chance that we’d find something, but only a 5% chance of what we’d find, it being cancer. So really, you’re looking at a 5% chance out of a 25% chance that something is going on in there. Given these odds, we’d rather not go ahead with a surgery. There are some patients, however, who say ‘no matter what I don’t want there to be any chance for cancer so open me up and get it out!’ That’s why we give you the option.”
Knowing this background, I made sure it was even clearer than before that I didn’t want to go ahead with surgery. Since I’m being scanned again in a few months to see if anything had changed, that scan might make it even clearer that I do need surgery, and if that’s the case, why speed that up? Might as well buy myself a few months of recovery post-chemo before actually needing surgery in the future.
Before we left the meeting with boss-man and his fellow I asked, “Why do you think my cancer responded so well to the chemo?”
Boss-man replied, “Beyond the simple answer of the cellular make-up in your body, I think it had a lot to do with your strength. It’s not often we get someone who is as optimistic and positive throughout this process. That has a huge impact.”
A few weeks later I made a donation to Dana Farber in honor of my nurses and doctors. The development staff allowed me to send a personalized card to each doctor with a note. After doing this, I received a call from the medical fellow and he thanked me for the gesture. After we spoke for a few minutes he left me with this, “In medical school, they teach you that one day you’ll have a patient who you’ll never forget. That’s you, Aaron.”
Now it’s early February, two months after getting the good news in December, and a month until my next follow-up scan in March. Mostly everything is back to normal. The hair on my head is growing like a chia pet, and it’s almost as if I never had cancer in the first place. Except for a few reminders. I can still feel the two collapsed veins in my arms, although they are not nearly as hard as they once were. And of course, a prosthetic testicle DOES NOT feel like a real testicle.
Spending the summer of 2014 like every other college student between their Junior and Senior year I was embracing the life of being an intern. I got the opportunity to work for an awesome Health Department near my hometown of Charlotte.
Not too far into my internship (maybe a week and a half in) I felt a weird pain that had decided to make its way into my life and decided I should go get things checked out. I went to my physician, referred to a Urologist and it was confirmed that I had Testicular Cancer.
When I got told this I didn’t know what to do…I have friends, family, fraternity brothers counseling me and telling me that they were in my prayers and if I needed anything they were there for me…for that I couldn’t be more thankful!
Later to find out it was a form of Embryonal Carcinoma, I had a procedure to remove my left testicle where they had deemed the tumor to be growing. After that, I had to play the recovery and the waiting game to get a post-op CT scan to see what we were going to be working with or what was the next course of action.
Once the scars were healed and I was up and moving again I went and proceeded to get my scan. Two days later…more news but not good. It had been long enough for my cancer to spread to a set of lymph nodes in my lower back…my mother was with me which made it worse…I hate to see her cry/upset. The next step was to meet with an Oncologist to discuss options of treatments.
Well by this point I had just accepted the fact that it happened and it was removed and nothing else needed to be done. With that little roadblock blown to smithereens I was facing a very difficult decision to be made: Stay at home, receive treatment or return to school and get treatment up there at an unfamiliar facility. This was an arduous task when talking to my parents and figuring out what to do.
I had already had extra time tacked on to my sentence as a college student and really didn’t want to have any other time added. So with that being said I packed all of my stuff up moved back into my residence hall which I was one of the 5 assigned RAs and the week after that had my port put in.
It was decided that I was going to going through the BEP regimen which consisted of a 3 cycle format. While taking classes, working and being involved I still managed to go for treatments when I needed to. There were three weeks where I was not able to attend class at all but had more than cooperative upper administration and professors that made it easy to keep up with what I had on my plate of a full course load.
Now don’t get me wrong, as any other chemo patient can tell you these times sucked. There were more bad than good times while going through treatments, many nights hugging the toilet from getting sick and losing so much weight due to appetite loss and diet restriction. Somehow I was able to get through it and was blessed with the best support system. I had friends, family and fraternity brothers who helped me and dropped what ever I needed help with whether it was just sitting with me at treatments, getting food or being there for me and my sick nights. One of the biggest moments of this all was when I was walking out of our Student Union and my brothers alongside another fraternity were there shaving their heads as well as any one else who wanted it to raise money for my chemo medical bills (close to $800).
Through all the fire and flames and most of the battle was fought within me, I could not have made it without all of my wonderful family, friends and brothers as well as all the medical professionals at my treatment facility for they were my rock and one of my biggest motivations to get through a dark time. Receiving my last treatment on October 20th ,2014 (my parents 30th wedding anniversary) and November 18th 2014, my cancer free diagnosis visit, as two of the best days of my life.
Here I am a year and a couple months later still cancer free, graduated from college and hoping to start Graduate School in the Fall of 2016 I couldn’t feel better and have a more clearer outlook on life and nothing can stand in my way!
I was diagnosed with testicular cancer three days after returning from my honeymoon.
Worst. Wedding present. Ever.
I remember standing in front of a mirror in a hotel room in Athens, Greece. I had just gotten out of the shower and was drying off, when “it” caught my attention. Hotel mirrors are the worst. They’re always huge and well-lit and show you all the little things you’d rather not see. Usually it’s a fat roll or unsightly body hair, but for me, “it” was a testicle that had swollen significantly in size.
My testicle had been this way for about a month or so. I remember it being an issue the week before my wedding. I didn’t think too much of it at the time. In hindsight, I was probably scared to find out what was actually wrong. I had a wedding quickly approaching and the last thing I needed was any kind of health scare. But looking at myself in that mirror, I finally realized that something was amiss. I walked out of the bathroom and informed my wife that I had a “man problem” (there’s no smooth way to broach the topic of a massive testicle to your wife). I explained to her what was going on and she comforted me as any good spouse would, saying things like “I’m sure it’s nothing.” In the end, we both agreed I should see the doctor when we returned home.
I met with my primary physician a few days later. He poked. He prodded. He examined. He hypothesized that what I had was something called a “hydrocele,” which is basically a fluid build-up around the testicle. He wasn’t certain about this, so he recommended I get an ultrasound and see an urologist.
So the next day I found myself laying uncomfortably atop a cold table, while a woman examined me. She recognized immediately that there was something wrong with the testicle. She asked if I had been kicked or punched in testicles recently. Umm I definitely would remember something like that, lady! She told me she would send the ultrasound results to my urologist. I asked her if she had an opinion. It was then she used the words “a mass” to describe the testicle. A mass? As in “a mass that is cancerous” I thought. Things were getting uncomfortable for me.
Fast forward a few hours later and I was patiently waiting in my urologist’s waiting room, with men who were significantly older than I. I was definitely brining the average age of that room down a decade or so. This can’t be serious I thought. I’m young after all! I’m in fairly good shape. My family has no significant history of cancer. I convinced myself that the diagnosis I was about to receive would be mundane in nature.
The nurse entered the waiting room and called my name. She collected a urine sample (I got pretty good at peeing on command in the urology office!). She collected a blood sample. Finally I saw the doctor. He examined me. He poked. He prodded. He whipped out his handy, mini, cancer-detecting flashlight and tried to shine a light through my testicle. No luck. That ruled out the hydrocele. It took him all of about three minutes to tell me that what he thought I was dealing with was cancer. Was he sure? No. Was he pretty sure? Yes. I held it together emotionally. It didn’t seem real. I sat there as his words echoed in my ears. He explained that surgery was needed immediately. He told me to see the nurse to arrange further testing. At that point, I was still keeping it together, but I was slipping. I joked around with the nurse, but I knew I had to get out of there quickly before I completely lost it. I walked to my car and got inside. I called my wife. Keep in mind that she and I had been married for all of three weeks at this point. I tried to tell her the news, only I couldn’t get the words out. I was scared. I couldn’t comprehend what this meant. Was I dying? Would I need chemotherapy? Would I lose my testicle? Could I ever have kids?
I won’t dwell on the details of my surgeries and subsequent recovery. Shortly after my diagnosis, I had an orchiectomy. A few months later, I underwent a retroperitoneal lymph node dissection (RPLND), which revealed that my cancer was confined to my testicle. I went home. I rested. I recovered. Eventually I went back to work and got on with my life.
Looking back, I was lucky. I was so lucky. I caught my cancer early. I avoided the dreaded chemotherapy. I had two successful surgeries and two amazing doctors. Some are not so lucky. Some face a physical battle that makes my situation look like a walk in the park. My struggle was overwhelmingly mental. From the moment I was told “you have cancer,” the mind games commenced. I assumed the worst. The negativity creeped in.
The nights were the worst. My wife would fall asleep and I would lay beside her, wide awake, with my brain firing on all cylinders. I would think about dying. I would get emotional. I would toss and turn, hoping that my wife wouldn’t wake up and discover that I was far more scared than I was leading her to believe.
After my diagnosis, everyone would say to me “stay positive!” Anyone who has been in a similar situation knows that this is impossible. You cannot stay positive 100% of the time. I’d have good days, where I felt like I could conquer the world. I’d have bad days, where all I wanted to do was stay in bed and feel sorry for myself.
So what do you do? How do you win the mental battle? You surround yourself with positive people. You stay busy. You live your life the best you can. Go to the movies. Go for walks. Hang out with family members and friends. I did all those things.
Maintain an active dialogue with your doctors. Ask them anything and everything you want to know. It’s your cancer, you have the right to know everything about it. Best advice I can give: don’t Google anything about your cancer. Seriously! It’s a bad idea. Once you fall down that rabbit hole, you’ll eventually find misinformation and worst case scenarios and you’ll frighten the crap out of yourself. Slowly, you’ll learn how to live with your cancer shadow following you around. Things will get easier. Your mind will begin to filter out the negative and embrace the positive.
I’m writing about my story for two reasons. For one, I do it because facing those old fears and feelings are good for me. If what doesn’t kill you makes you stronger, then I am undoubtedly stronger now than I was before my diagnosis. Everyday life struggles aren’t so intimidating anymore. I’m not so quick to feel sorry for myself about things that ultimately don’t matter. Having cancer sucks. Finding things out about yourself in the face of cancer doesn’t.
I share this story also to help anyone who is battling testicular cancer. They say males as young as 15 years old can develop the cancer. 15! I can’t fathom being in high school and dealing with the things I dealt with as a 29 year old adult.
Let’s face it. Most of us men aren’t exactly open and communicative in the first place. We play things close to the vest. Compound that with a disease that affects our testicles, our “manhood”, so to speak, and you have a situation most men are afraid to talk about. If I hadn’t confided in my wife in that hotel room in Greece, who knows how long I would have waited before consulting a doctor.
It’s 2016. In case you haven’t noticed, cancer is everywhere. It doesn’t discriminate. It doesn’t wait for your next check-up at the doctor. You have to be proactive and pay attention to your body. Don’t be afraid to check into your health. Don’t assume you know best what’s going on inside of you. If caught early, testicular cancer can be treated effectively.
One day cancer will be beat. I firmly believe that. Too many smart people are working on this problem. Too much money is being thrown at the issue. There will be a major breakthrough one day. Until then, the only effective defense is awareness. Those of us who are survivors should make it our mission to inform and educate. All cancers are worth the conversation. However, considering how common it is for certain men and how soon it can strike, there is no reason why testicular cancer shouldn’t be at the forefront of the conversation.
As of today I am cancer-free. I’m just now getting to the point where I can look back at my journey and understand what it means. I hope thousands of people read this and share this, but that’s probably not realistic. I hope it does some good. Whether it comforts someone battling testicular cancer or inspires another to consult a doctor, then it was worth my time.
My name is Jason Greenspan, and I’m a Stage IIA Non-Seminoma Testicular Cancer survivor.
My story started back in May 2012. I was only 18 and in my senior year of in 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’m usually the one who plans everything! Planning for this was fun, but also a challenge. I already had the limo reserved, the schedule made, 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 35, yet there’s almost no awareness of it.
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 didn’t remember feeling before. Clearly, something wasn’t right. It’s difficult to describe, but I had this gut feeling that it was something horrible. I never had had that feeling before—ever. I went upstairs to my mom and told her. She said to try not to worry too much about it, but she’ll make a doctor’s appointment anyway. 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. Being diagnosed is something that I never thought would happen to me! 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 him 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—I feared there wouldn’t be many more.
After reading more information about Testicular Cancer, I quickly realized that it’s one of the most curable cancers out there. I was lucky in that regard, but sometimes others aren’t.
Now, I had to start thinking about my treatment. After having an ultrasound and taking many blood tests, I met with my urologist, and he told me that I needed to have surgery. I never had had surgery before. I was terrified. I remember dreading that day! Luckily, I was able to come home later that same day. That helped me a little, but not by much.
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 incredible to have all the support that I had! Luckily, the surgery didn’t take long. I couldn’t wait to get home!
So now, after having my surgery, I thought that everything was okay, and my nightmare was finally over! It turned out that it hadn’t even started. After taking many more tests such as X-rays, CT Scans, and general checkups, it turned out that cancer had spread past my one testicle. 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, though, is phenomenal. He told my mom and me what will be happening and how to move further with my treatment. At this point, I needed to have chemo. I couldn’t believe it. The first thing that I think of when I hear the word “chemo” is hair loss. I couldn’t imagine losing my hair. It’s something that had 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. I found out that I needed to have nine weeks of chemotherapy.
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 wasn’t 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. Since I knew this would happen, it at least helped me to prepare by taking medicine, but throwing up was now my biggest fear.
Towards the end of my chemo treatment, I needed to have a lot of pricks from the needle each and every day I was there. I could have up to 6 pricks on a bad day, but it was still usually 2 or 3 pricks 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. 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 having this terrible nightmare be over.
All of the nurses at my treatment facility were wonderful! They were very kind and caring people. They were not able to see me much, though. 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 wouldn’t be able to look around, which got me sick. Every time I would see an IV bag or a person in one of those chemo chairs, my stomach would start to hurt. I joked after the fact, that if I went to visit the nurses after I was feeling better, they probably wouldn’t even remember me because they were never able to see my face!
The entire cancer experience has let me meet many amazing and inspiring people. I was able to meet other cancer survivors, caregivers, and other people who have been affected by cancer in some way.
For men, it’s crucial to perform monthly testicular self-exams. Sometimes there are no present symptoms, and you might not have any pain. If you notice any changes or have any concerns regarding your testicle(s), contact your doctor immediately.
Let’s help cancer patients with just one penny at a time, and STAMP OUT CANCER now!
[Check out Jason’s site Stamp Out Cancer Now]
A Family After Testicular Cancer Is Possible
My name is Dennis Kochis. I am 37 years old and a testicular cancer survivor. My diagnosis occurred on April 25, 2012, but to tell the true story I need to back track a little. The year 2012 was starting out amazingly. I was recently promoted, I was engaged to be married to my now wife, and my New York Giants had just beat the Patriots to win the Super Bowl. Also, I was set to head to Boston for my bachelor party with my friends, brothers and father to watch the Yankees take on the Red Sox and some good old fashion guy’s time. Sounds like a story out of a movie doesn’t it? Little did I know what was about to happen when I returned from Boston.
The Monday after my bachelor party I was working from home. I was sitting at my computer when I started to get a blunt pain in my left testicle. It wasn’t uncommon to be sore in that area after long drives, walking or standing a lot, and under normal circumstances I would’ve ignored it as I’d done in the past. But this time was different. Why? Well, a few weeks earlier on Easter night, I was in bed and grazed my testicle to feel a bad pain shoot through it. Like most men, I ignored it, chalked it up to playing with the kids and must’ve gotten hit there. I never considered checking myself. Testicular cancer wasn’t discussed when I was growing up. We weren’t taught in school about it and to check. I heard about it from Lance Armstrong , Tom Greene and John Kruk, but never thought it could happen to me, so to check never crossed my mind. As I sat at my computer that day, I realized this doesn’t seem like a coincidence, so looked up how to check myself. I gave myself a screening and felt what seemed like a large lump on the side of my left testicle. I already had a physical scheduled with my doctor the next day, so I figured I’d tell her and get checked there.
As I sat in my doctor’s office, I had all types of thoughts going through my head, always going to the worst scenario for some reason. Much to my relief, the doctor told me she didn’t think it was serious by where it was and how it felt. She thought it was a harmless fluid sack that could be drained. The doctor ordered an ultra sound and gave me an urologist to visit. I went for the very uncomfortable, cold and embarrassing ultra sound of my testicles and slept soundly that night.
The next morning when I woke up to go to the urologist (which I never even heard of until this btw), I received a call from my doctor saying – it’s amazing I can quote this word for word – “I got the ultra sound results and was expecting to see fluid, but didn’t. Worst case scenario, this is cancer, but it is treatable. Dr. Rosen will tell you more.” My stomach sunk, and I was never so nervous for a doctor’s appointment in my life.
The urologist came in, gave me a quick test (which has become a norm in my life now), sat back in his chair, and uttered those dreaded words, “This type of tumor is cancer.” Cancer. There is that word again, but now it’s reality. I didn’t even know what to say or do. I’m three weeks from my wedding and was just told I have cancer. I asked the doctor to get my fiancé in the waiting room. She came in and I cried. As he went through the next steps of what will happen, my head was spinning. I was about to lose a testicle, I may need chemo or radiation, what if it spread, what if I can’t have kids, am I going to leave my wife a widow right after we are married? It was the scariest and most emotional moment of my life. The emotions continued as I informed family and friends. As hard as it was for me knowing I had cancer, making it harder was the fear in my fiancé and families faces. I was scheduled for surgery the next day. At this point it was still unknown if the cancer spread, but all I kept thinking was I’m a guy about to lose a testicle.
After my surgery, I struggled mentally. The change to my body. The fear of if the cancer spread (a question that wouldn’t be answered until after my wedding). I remember the first time I felt the prosthetic in my body I had a complete meltdown and anxiety attack. But thanks to my wife, family, friends and a great set of doctors I was able to manage through this time. My wedding day came and for the first time cancer wasn’t on my mind. A week later I was back at the doctor. My marker results were in and there were no signs of cancer in my body anymore! The surgery was enough and now it was time for the monitoring phase. I started to see an oncologist whose first words to me I will never forget: “Testicular cancer, when caught early, is not something we hope we can cure, but it’s something we CAN cure.”
As the next year progressed, I was at the doctors constantly for check ins, catscans, and x-rays, which made it difficult for me to mentally get a grip. Each visit was lead with fear of bad news. That was until June 2013. Why? Because that’s when my wife came out of the bathroom and told me she was pregnant! The joy, relief, happiness and emotions I felt at that moment were so overwhelming. I can’t even describe it. A year removed from having my testicle removed, a year of stress both physically and mentally, lifted by the fact that I was going to be a dad!
Today I’m three years removed from my surgery. While I still have my moments of stress, mainly at doctor visit time, I am in a great place. I am 100% cancer free and a husband and a father. In fact, we are expecting our second child as I write this. I am thankful that I had a pain and checked myself; I caught the cancer early, and because of that, surgery was enough to rid the cancer out of my body and allow me to produce a baby naturally and have a second on the way. Every minute I look at my son, I am thankful I gave myself that test and I am thankful for the wonderful doctors and amazing people I have in my life to help me get through this. Early detection is the key. Most men don’t feel pain and testicular cancer can be an embarrassing subject to young men. But I will always make sure my son, my nephews, and my cousins all know to check themselves regularly, and if they find something, get it checked because, like me, if you find it early you can live a long “normal” life.
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!