TCS Cup Golf Outing 2016
This summer we held the first ever TCS Cup Golf Outing, presented by The Urology Group and benefiting the Testicular Cancer Society.
We would like to thank all of the participants and volunteers for making it such a great success.
A special thanks to presenting sponsor The Urology Group, Hole-in-One Sponsor Gardner Business Media and Hole Sponsor Holistic Lifestyle Solutions for helping make the event even more impactful.
The 2016 TCS Cup Golf Outing results:
TCS Cup Winners: Robby DasVarma, Keith Custer, Brian McGraw and Mike Famularo
2nd Place: Don Kline, Jerry Gildea, Brent Glatfelter and Rick Kline Jr.
3rd Place: Willian McCarty, Charlie McCarty, Jessie Clifton and Chris Nicholas
Longest Drive: Tom Yacks
Closest to the Pin: Chris Nicholas
Most Honest Team: Rick Holmes, Rich Holmes, Dick Oliver and Santosh Nuchikat
Not only was this team the most honest on their score card but Rich Holmes found $15 cash on the course and donated it to the event. What a great team!!
Check out some pictures from the event below
Winning Cup Presentation
The Ceremonial Cup Winning Toast
CrossFit Impervious recently hosted its first annual “Balls4Balls” event. Thirty-six teams of two participated in a workout using medicine balls and kettle bells to raise awareness and funds to promote the prevention of testicular cancer.
Through the selling of t-shirts, donations and a 50/50 raffle CrossFit Impervious raised $500 which has been donated to the Testicular Cancer Society.
We sincerely appreciate the efforts of the participants and applaud them for setting a perfect example of how one can do good while doing things they love to do.
Check out some more pictures below.
On the July 21st Chris Stigall Show, Jeff Roe, Senator Ted Cruz’s campaign manager said that Governor Chris Christie had, “turned over his political testicles long ago.”
Does losing one’s political testicles make them less of a man? Does it make them less virtuous? Does it make them less capable? Does one need political testicles?
There are hundreds of thousands of testicular cancer survivors that have lost a testicle(s) and yet they have accomplished amazing things in their lives. Some may even admit that their accomplishments would not have happened had they not been diagnosed with testicular cancer.
Mr. Roe can make disparaging remarks about whomever he would like, however, involving testicles into a feeble, sophomoric punchline does noting but insult those that are facing the long-term challenges of a missing testicle(s).
Instead of insulting hundreds of thousands of men, perhaps Mr. Jeff Roe could use his platform to speak about testicles in a proper manner. For example, he could ask why millions of young men are not being educated about testicular cancer in schools.
As the founder of a 501(c)3 nonprofit I do not get involved with politics and I am certainly not defending Governor Christie. But, I do ask Mr. Jeff Roe, what are political testicles and can women lose their political ovaries?
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
Over 60% of young men say, “None of these people” have spoken to them about testicular cancer.
Testicular cancer is the leading cause of cancer in young men age 15-35, yet not many people appear to be educating these young men about the disease.
A January 2016 survey by the Testicular Cancer Society asked 1000 young men in the U.S., ages 18-34, “Which of the following people have spoken to you about testicular cancer?” Respondents were given 5 multiple-choices in a multiple-answer format.
62% of respondents answered None of the Above
22% of respondents answered My Doctor
10% of respondents answered My Parent
9% of respondents answered My High School Teacher/Nurse
5% of respondents answered My Sports Coach
5% of respondents answered My College Professor/Nurse
These results indicate that people most likely closest to these young men are not discussing testicular cancer with them during a time when these young men are at greatest risk for the disease. While testicular cancer can occur at any age, it is disturbing that opportunities to educate those at highest risk are being missed.
These results showed minor improvement from the 2015 National Spoken About TC Survey in which 67% responded None of the Above compared to 62% in the 2016 survey.
For more information about this survey please contact the Testicular Cancer Society.
Testicular cancer is the leading cause of cancer in guys age 15-35, yet a January 2016 survey by the Testicular Cancer Society indicates less than half of young men know how to do a testicular self-exam.
The Testicular Cancer Society asked 500 young men in the U.S., age 18-34, “Do you know how to do a self-testicular exam?”
42% of the respondents indicated Yes.
43% of respondents indicated No.
16% of respondents indicated I’m Not Sure.
If caught and treated early testicular cancer is almost 100% curable. However, if diagnosed in later stages the survival rates drop and the treatment burdens are increased. A monthly testicular self-exam can help men become more familiar with their bodies, lead to early detection of testicular cancer and possibly save their life because they’ve noticed changes.
The men surveyed were ages 18-34 which is troubling because they are in the age group at highest risk for the disease.
There is a positive sign in that the 42% of respondents indicated that they did know how to do a testicular self-exam, which is an increase compared to the 32% that indicated the same in the 2015 testicular self-exam survey.
Resources from the Testicular Cancer Society are available for helping with self testicular exams and for reminders.
They also have a monthly text reminder system with instructions that is available by texting @selfexam to 81810
There is also information about testicular self-exams on their website.
For more information on this survey, please contact the Testicular Cancer Society.
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!
Mother of a testicular cancer survivor
In January 2014 my twenty-four year old son, Alexander, had the world by the tail. He was in his final year of Geology at the University of British Columbia (UBC) with the promise of graduation in May and dreams of a permanent research job in Canada’s oil patch. He had arrived home for Christmas tired and gaunt but as parents, my husband, Ross, and I recognized the combined signs of late nights in the lab and living on your own eating unbalanced meals. He looked the picture of undergraduate health and well-being. I had spent a couple of days with him two months earlier as I headed to Japan to visit our daughter, Victoria, and was pleased to see how well he looked. We had not seen him since the previous Christmas, as he had chosen to stay on campus to participate in a research project during the 2013 summer term.
Ross and I had waved goodbye on January 6th with parental words of encouragement regarding the final push to complete research papers and excited promises to book our flights to Vancouver for May’s graduation ceremonies. Within a day or two of his return to Vancouver, Alex called asking for advice about shortness of breath and chills. Because H1N1 flu was rampaging across western Canada accompanied by the fact that Alex had just been on two five-hour flights with poor air quality, we assumed that is what he had picked up. In true mother-form, I offered the suggestion of chicken soup and getting to bed on time. I called him the next day and, because he was not feeling any better, suggested that he go to see a pharmacist and find an over the counter medication for flu symptoms. Because it was the weekend and Alex has never been one to take medications, he chose instead to sleep and hoped that he’d feel better on Monday.
It was impossible to contact him during the day while he was on campus because Alex did not own a cell phone. We have since remedied this situation. Due to the fact that we had not heard from him since Sunday afternoon, we assumed that he had shaken off whatever had been ailing him and had headed to class. Because both of our children live away from home, every evening before going to bed I check my email to see if either of them has contacted me. Imagine my surprise when I discovered an hour-old text message from Alex telling us that he’d collapsed in class and had just been told that he has cancer. I remember telling Ross that I hoped that one of Alex’s friends had grabbed his iPod and decided that this message was somehow a joke. We both agreed that Alex chose his friends well and that none of them would be drunk or stupid enough to think that we’d find this funny. I replied with a question mark and hoped to receive something from Alex. It was well past midnight before I heard anything from him. By this time, Ross had had to head off to bed because he had a 6am Skype meeting with colleagues in Spain. We had agreed that I’d wake him if needed.
I sat alone crying in my dark kitchen staring at the computer screen willing Alex to let me know what was happening. It is extremely hard knowing that your baby boy is out there somewhere hurt and petrified. All that you want to do is be with him and take the fear and pain away. As I sat waiting, Victoria popped up on Skype. She was sitting at work in Gifu (Japan) and noticed that I was active on Facebook in the middle of the night and she wanted to know if I was all right. Without thinking it through, I blurted out that her brother had cancer and that I was waiting to hear from him. This was the first time in her life she was at a loss for words. It may just have been a result of something akin to shell shock but I found this quite comical and burst out laughing. Unfortunately she had the volume turned up on her computer’s speakers so everyone in her office heard the news and then heard her crazy mother laughing. Thank goodness most of them speak no English but they were able to see the blood drain from Victoria’s face so they knew that she’d received bad news but then were very confused to hear me laugh. Oh well, these are the joys of sending your children to work abroad. Victoria’s first reaction to the news was that she’d come home immediately to which I responded with an emphatic ‘no, stay put.’ This may sound hard hearted but at this point, I had no answers about Alex’s future and I wasn’t in any position to have to deal with Victoria’s questions and concerns. I told her that I’d revisit her offer once I knew what the future held.
Throughout the night, Alex was able to send a couple of text messages letting me know that he had testicular cancer, that a surgical resident had talked to him about removing the testicle immediately, that he wanted me to come to Vancouver asap, and that he was scared. Without a cell phone, Alex was only able to text between blood draws and ultrasounds and only when he could find a WiFi connection. Waiting for the next message was driving me crazy plus Victoria kept Skyping me wanting to know what was going on.
At this point, I knew I needed help from someone on the ground and realized that we know only one couple in Vancouver. Chuck was a childhood friend of Ross’s and we’d met his wife, Dana, only once but I decided to try calling before it got too late. At about midnight, Vancouver time, Dana picked up on the first ring. I introduced myself and told her what had happened. She was wide-awake and ready to help. Because Chuck is a radiologist at VGH, she knew how to bypass the hospital switchboard and was able to track down Alex’s whereabouts to the Emergency Department and get me the name and number of his nurse. Dana then offered to stay awake all night in case I needed her.
As I sat in amazement that an almost complete stranger was willing to forgo a night’s sleep in order to be of assistance, the phone rang shocking me back to reality. It was Alex! A nurse had noticed him fumbling with his iPod trying to send messages and had loaned him her cell phone. When he explained that he was texting his parents in Ottawa and that he didn’t want her to incur long distance charges, she told him that his parents were probably worried about him and that he could talk as long as he wanted. It was wonderful to hear his voice. Even though he was on the verge of crying and I was doing everything in my power not to let him know that I too was battling tears, he was able to give me a synopsis of the day’s events.
He’d awakened that morning still not feeling 100% and got himself to campus. After his first lecture, he went to talk to his prof about an assignment and the next thing he knew, he was lying on the floor looking up at a sea of faces. Once folks realized that he was coherent, the other students went their separate ways but the prof remained by Alex’s side until he could sit up. UBC’s protocol is to call an ambulance but the prof realized that the location of the geology building made it very difficult for a motor vehicle to approach and that UBC Hospital was a three-minute walk from the front door and Alex was mobile. This gentleman stayed with him while he had a blood test and waited for the results. Alex laughed when he related the story of the doctor coming out to the waiting room, scanning the patients, and calling ‘Alex’. Alex raised his hand and the man approached him with the statement, ‘Well, I guess that you’re not pregnant.’ I can only guess that the blood tech had written ‘Alex’ on the vial so the doctor wasn’t sure is this would be a pregnant Alexandra or a cancer riddled Alexander. Alex was then asked if he was a smoker (no) and then, the all-important question, ‘Do you have a lump down there?’ I have since spoken with Alex’s prof and we both wonder what kind of doctor refers to a lump on a young man’s testicle as ‘a lump down there’. Alex admitted that he’d found the lump in August 2013 but had hoped that it would just go away. Alex had to say goodbye to his prof as he was then sent by cab to VGH for further tests. At Emergency, he was sent for an ultrasound and more blood work. A surgical resident talked to him about the immediate need to remove the cancerous testicle. The thought of surgery scared him as he’d never had surgery before but the resident was very persuasive so he signed the permission form. Because Alex had been having problems breathing, he was then sent for a chest x-ray. Once he’d been returned to the Emergency Department to wait for the surgical resident to prep him for the OR, a wonderful nurse loaned him her phone to call home. As we were chatting, Alex told me that he had to go as someone had come to get him. I remember telling him that I’d be in Vancouver as soon as I could get a plane ticket and that we loved him ‘to the moon and back’. Once I hung up and realized that my baby was going into surgery all by himself, irrationally I felt like a failure for not being with him in his time of need even though rationally I knew that I had done nothing wrong.
Because I wasn’t expecting to hear from him during surgery, I spent the remainder of the night booking my flight, catching Victoria and Dana up on the latest news, creating a ‘to-do’ list (contact someone at UBC to let them know that Alex isn’t skipping class; cancel chiropractor appointment; figure out how to tell my mum that her grandson has cancer which caused me to be thankful that his other 3 grandparents were already dead. Seeing this last point in print has made me realize just how my mind was working that night.), and counting the minutes before I thought it was wise to wake Ross and ruin his day. Because I had been operating on adrenaline, fear, and nerves, I had forgotten that our family had one other member that needed to be included in all decisions. We have hosted international students since 1998 and Emma had been living with us since 2012 while she attended high school. The fact that our hosting contract clearly stated that minor female students must not be placed in a home with a single male, only added to my growing laundry list of things to sort. Before Ross and Emma awoke, the phone rang again bringing me once again back to reality. I remember being aghast hearing Alex’s voice. Before I clued into the fact that he was telling me something important, my mind conjured up all sorts of scenarios … the surgery had been postponed; the surgeon had opened him up and immediately closed him because the cancer had spread throughout his body; Alex had changed his mind and refused surgery; or, this was all just a bad dream, Ross would pinch me and I’d wake up. That night, my mind was a wild and wooly place.
Alex explained that the doctor who’d approached him was not the surgical resident but instead, an oncologist from the British Columbia Cancer Agency (BCCA). This gentleman told him that chemo must be started immediately and surgery could wait. Alex had no idea exactly what this meant but if it meant no surgery, he agreed to accompany this gentleman. Alex’s guardian angel came in the form of Dr. Christian Kollmannsberger. A VGH radiologist had read Alex’s chest x-ray and what he saw caused him to contact Dr. Kollmannsberger. The x-ray clearly showed tumours on both lungs and fluid in the chest cavity causing Alex’s shortness of breath. In Dr. Kollmannsberger’s opinion, yes, the testicle did have to be removed but the more pressing issue was to stop the cancer from spreading further. The orchiectomy could wait. Alex seemed to be quite at ease with this turn of events because, in his words, ‘I like Dr. Kollmannsberger, he’s very calm.’ I let Alex know that I’d be arriving in Vancouver the following day and we both hung up feeling serene for the first time in six hours.
Functioning under the impression that Alex was now in good hands (at this point I’d not yet met Dr. K. and I knew nothing about the reputation of the BCCA, I just knew that my son was calm and that was good enough for me) I spent the remainder of the day going through my to-do list but first, I filled Ross in on what had happened and broke the news to Emma. She immediately stated that she wanted to stay with us and not be moved if I had to stay in Vancouver longer than a few days. My plan was to go and fly Alex and his diagnosis home for treatment at our local cancer centre so I asked her to hold off telling her parents until we had a better idea what the future held. Like most huge bureaucracies, it is almost impossible to find a direct contact number for a specific service at UBC. I decided to make a cold call to the Faculty of Science and hope that I’d be sent to the person who could provide answers. Once I’d explained the situation, I was immediately connected with the head of ‘Science Advising’ and was surprised to learn that this gentleman already knew about Alex’s medical situation. It is nice to know that when a student collapses in class, word gets out to the people who need to know. I was told not to worry about his academic situation and that once we knew if he was able to return to his studies, to contact him and we’d discuss how to make up for any lost time. This one call has resulted in Alex’s degree completion being handled by the head of ‘Science Advising’ which has caused Alex to smile many times as this is one of those offices that treats undergrads like cattle. Instead of having an assigned councilor who might remember your file, you take a number and talk to whoever is next available. Alex now understands that there is a silver lining to cancer. He is enjoying being able to walk into this office, bypass the check-in desk, and go straight to see his advisor.
I packed for two weeks and left home the following day. Little did I know that I’d be gone for 346 days.
Upon arrival at the BCCA, I discovered Alex hooked up to IV chemo and in good spirits. I met Dr. Kollmannsberger and was told that Alex had ‘non-seminomatous germ cell tumor with extensive lung metastasis, brain metastasis and primary tumor in situ’. Before I could process this information, I was hit with the following: ‘Despite the extensive metastasis, your son still has a 30-50% chance of being cured. We’re going to avoid bleomycin due to his extensive lung involvement and rather treat him with 4 cycles of ifosfamide, Cisplatin and etoposide. After chemo, the resection of his primary tumor and potential resection of residual lesions will be done. As for his brain metastasis, it depends upon the post chemotherapy staging and could potentially involve cranial radiation or surgery, or just simply surveillance.’ I knew that Alex was sick but hearing that he had only a ‘30-50% chance of being cured’ made me feel like I’d been hit by a locomotive. I was able to collect my thoughts and asked when I could take Alex back to Ottawa for treatment. Dr. K. patiently explained that Alex was so sick that that he possibly wouldn’t survive the plane trip. I figured that my planned two-week stay had now been extended to three months.
I had given little thought as to where I’d stay while in Vancouver. Dana had offered me a chesterfield but Alex’s nurse suggested that I stay with him that first night. The lounge chair in his room made out into a single bed complete with sheets and a blanket. Alex went calmly off to sleep that evening happy in the knowledge that I was there. At 3am, all hell broke loose. Alex woke up screaming that he was drowning. I shot out of my lounge-bed and nurses arrived within seconds. Alex, covered in sweat, his eyes as big as saucers, gasped for breath. One of the nurses added something (possibly a relaxant) to his IV. Within minutes, Alex was noticeably calmer but his breathing was still shallow. It was suggested that we try to get back to sleep, the lights were turned off and Alex was soon asleep. I however, was awake the remainder of the night.
My first full day at BCCA was one of uncertainty. Alex was seen by a respirologist who made comments about inserting a chest tube and draining ‘the fluid’. I asked if the fluid was blood and was told that this information would not be known until they saw what came out. I don’t know why medical people can’t just answer a question rationally instead of hedging their bets. Even I, a person with no medical training, could connect Alex’s dots. His chest x-ray showed tumors on the outside of his lungs; beyond the chest cavity are ribs; lungs expand when inhaling; lungs covered in tumors rub against ribs causing bleeding therefore, the unknown fluid is blood. I’m not sure what other type of fluid the respirologist thought it could be. Alex was not at all pleased with the thought of a chest tube. Every time he’d think about the procedure, he’d panic and hyperventilate causing his blood pressure to skyrocket. It wasn’t until later in the day when he was unable to lie flat and successfully breathe for an MRI that it became medically necessary to suspend chemo and return him to VGH to drain his chest. My job during the tube insertion was to keep him talking so that he wouldn’t dwell on what was happening. This was a bit difficult to do as we both watched the procedure as it was reflected off the doctor’s face shield.
Alex spent 10 days at VGH while 4 litres of blood was drained from his right chest cavity. During this time, it was my job to convince him that his stitches were strong enough that he could get up and walk around. Of course the physiotherapist and his nurses told him that walking was the best exercise, as it would reduce the possibility of blood clots and bedsores. Alex however knew better. He was convinced that if he just lay still, the blood would drain and he’d suffer no complications plus, the tube hurt when it rubbed against his lung and the stitches pulled with every step. At first, I tried gentle persuasion but when that didn’t work, out-right bullying and threatening did the trick. Sometimes being a caregiver means pulling out the big guns. Alex wanted to return to BCCA and restart chemo so that he could see some progress but couldn’t until the blood had drained. I think I finally resorted to telling him that I’d call Dr. K. and tell him to cancel Alex’s chemo because he had decided not to co-operate and get his body moving. He acted just like he did when he was four years old when told that he couldn’t do something because he’d chosen not to complete another task first. He dug in his heals, found his inner strength and walked those halls. During this period, we were also introduced to the fact that he was expected to inject himself daily with a drug designed to boost his immune system for the first ten days following each chemo cycle. Alex had never had a needle phobia but injecting himself was beyond his tolerance. Various nurses tried to teach him but he’d lower the sharp to within a hair’s breadth of his skin and couldn’t complete the injection. I had injected our diabetic cat only a couple of times but it was enough experience that I knew I could do it. What I had not considered was the fact that injecting your cat is very different than injecting your son. As much as I loved my cat, I had 24 years of memories and love tied up in this young man. No parent wants to deliberately cause their child pain but, Alex and I worked out a system where he’d fill the syringe and swab the site. I would then count down from five and inject on zero. We actually became quite good at it however, some days he’d tense his abdomen and that injection would result in a lovely green-yellow bruise. We laugh about it now but neither of us misses this routine.
Since arriving in Vancouver, I’d been camped out on our friends’ chesterfield and as comfortable as I was, I knew that this could not go on forever so I hit the streets looking for accommodations. Alex had been living in what I refer to as ‘student dump housing’. He was renting a moldy, cold, damp room in the basement of a family home. While he was healthy, a little mold and mildew wouldn’t hurt him but now that he was undergoing chemo, he could not return to this dive. Staying in a hotel or at a B&B was financially out of the question and because universities were in session, furnished rental units were at a premium. I also needed a place near BCCA and VGH as well as on a transit link as I had no vehicle. Unknown to me at the time, many homeowners near VGH have turned their homes into ‘Guest Houses’ intended for folks who’ve had to come into Vancouver for medical treatments. The accommodations I chose can best be described as a ‘bed-sit’. It was located a 3 minute walk from the front door of VGH, a 10 minute walk to BCCA, an 10 minute walk to the grocery store, and a 4 minute walk to the laundromat. We had a room with 2 single beds, a TV, a chesterfield and chair, a full kitchen and bathroom plus a balcony. At this time I was still under the impression that we’d be home by Easter.
As the caretaker of a young adult cancer patient, my days were spent keeping Alex’s mind busy. Because his physical strength had been zapped, he did spend many hours sleeping and playing video games. Because Alex had always enjoyed photography, a friend advised me to research photography Meetup groups in Vancouver. I had never heard of ‘Meetup’ before and was thrilled to discover this on-line organization. With a couple of mouse clicks, we became members of ‘Vancouver Photowalks’ (http://www.meetup.com/Vancouver-Photowalks/). This became our major social outing during the two-week breaks between chemo cycles. Members understood and accepted Alex’s limitations as he struggled to keep up with the group and many offered to walk with him so that I could go on ahead and enjoy the company of others. We tried not to miss a single outing. Even though Alex’s stamina waned with each chemo cycle, he was determined to attend all photowalks. This actually made my job a bit easier because he set himself a goal and worked toward it. So that we did not sit in our tiny rooms and drive each other crazy, we’d go for walks, go grocery shopping, and do laundry. We even managed to fit in a short trip to Vancouver Island and Whistler. Of course, these break weeks were not all fun and games. There were always the routine blood tests that often resulted in panicked calls from Dr. K. telling us to return to BCCA for either a blood or blood & platelet transfusion. This meant hours of waiting while Alex’s blood was typed and crossed before the bags of blood or platelets would be sent by taxi from the Red Cross office a half hour’s drive away from BCCA. I once offered to ask our landlord if he’d drive me to the Red Cross and I’d pick up the blood myself. I was told that the protocol of the Red Cross was that an unknown taxi driver was more trustworthy than a patient’s family member. I’m not sure what the Red Cross thought I’d do with these blood products.
During chemo weeks, Alex remained at BCCA as an in-patient. During his stay at VGH, he managed to pick up Vancomycin-resistant Enterococcus (VRE). I’ve been told that this is not unusual during long hospital stays but it does mean that he’ll never be able to take the antibiotic ‘vancomycin’. The upside to this problem was that it meant he had to have a private room at BCCA, as he was now considered ‘contagious’ to those with suppressed immune systems. It also meant that we could now watch ‘Big Bang Theory’ at full volume and laugh as loud as we wished without bothering anyone. I had watched the movie ‘Patch Adams’ and appreciated his belief that laughter is the best medicine. Alex always felt better after a good belly laugh and the comedic genius of Jim Parsons helped him through the worst chemo cycles.
During Alex’s cancer treatment, it occurred to me that very few friends had visited him or even called to see how he was doing. At first I thought it was because they were all in their final year of studies and therefore too busy but I discovered that those of Chinese descent believed that Alex’s cancer was a bad omen. I had never heard such nonsense and was told by one young woman that this was widely believed by her grandparents’ generation but that many young Chinese still held this belief. I figured that I was too busy to re-educate these folks so Alex now has to re-establish these friendships with those he chooses.
In order to keep friends and family in the loop, I spent hours, usually while Alex slept, writing email updates. Of course, I was in daily touch with Ross by phone so he always knew what was happening. Emma, bless her heart, convinced her parents that she wanted to stay with Ross so that she could support him. Because she’d lived with our family since 2012, she felt at home with us and, since this experience, has a special place in our family.
When chemo was complete, we chose to remain in Vancouver for another eight months so that Alex would have a continuum of care, which ultimately involved an orchiectomy and two lung surgeries. I am assuming that most of the readers of this article are Americans. I should explain that the Canadian health care system is not as wonderful as we make it sound. Alex attends university in a province in which we do not live. Because he was too sick to return to Ontario, he received his cancer treatment in British Columbia. Even after chemo, it would not have been as easy as you’d think to return home to Ontario for an orchiectomy and lung surgery so we chose to stay in BC. Because we’d established a relationship with a fantastic oncologist, this paved the way to a top-notch urologist and the best thoracic surgeon in British Columbia. These are contacts that you cannot establish on your own. Socialized medicine dictates that patients are not permitted to choose their own specialist. You are assigned to whichever doctor your general practitioner can get to take your file. Alexander was so very fortunate to be sick in a city where some of Canada’s best specialists practice. I am most thankful to the unknown radiologist at VGH who knew that Alex needed Dr. Kollmannsberger. In Canada, we consider that we’ve won the lottery if we happen to be seen by a world-class specialist and, as I learned since returning home, Dr. K. is one of four world-class testicular cancer specialists working in Canada and the other three are located in Toronto so even if I had been able to return Alex to Ottawa for treatment, there was no guarantee that his outcome would have been the same.
By the end of chemo, Alex’s scans and x-rays showed that the tumors on his lungs had nicely shrunk and the spot on his brain had disappeared. This was something worth rejoicing and we did by going out to dinner at Alex’s favourite restaurant. It always seemed that every dance of joy was followed by warning shots across the bow. Dr. K. warned us that, if after the orchiectomy, the pathology report showed the presence of teratoma Alex would have to undergo lung surgery to determine if it had spread to the lungs. Alex faced the orchiectomy with trepidation because he’d never had a general anesthetic but the surgery went off without a hitch. Within a week Dr. K delivered the bad news. Teratoma was reported in the testicle. I now had to help Alex mentally and physically prepare for at least one lung surgery.
As we waited to see the thoracic surgeon that Dr. Kollmannsberger had told me was the right man for the job and because I had 100% confidence in Dr. K. we’d have waited to the end of time to see Dr. Yee, I made certain that we daily left the apartment even if it was just for a walk through the neighbourhood but, because we had no vehicle, we stayed in Vancouver and thoroughly enjoyed the city wherever local transit could take us. We were fortunate that it took only two months to see Dr. Yee. After receiving excellent scan, x-ray, and blood results from Dr. K., we were both knocked flat when Dr. Yee rushed into the consultation room and pronounced that he didn’t think that he’d be able to remove all of the tumors and as a result, Alex could expect to live only another two years. WOW!!! Dr. K. hadn’t prepared us for this grave news. Alex was given the option of not going through with the surgery and just enjoying his remaining years but he agreed to the first operation. The best that Dr. Yee’s assistant could do was to schedule the operation seven weeks hence. My first thought was: ‘How am I ever going to keep Alex busy for almost two months and his mind off his imminent death?’ We were both crying as we left the office but I was also beyond angry at Dr. K. for not preparing us for this news. We’d placed our faith in this man and he’d failed us. By the time we’d walked back to our bed-sit, the tears had been replaced by shock and we sat for an hour or more in silence staring at each other. Once I’d re-established contact with my faculties, I called Dr. K. to ask why he’d withheld such important information. Nancy, Dr. K’s assistant, reminded me that it was Clinic Day so Dr. K. was unavailable until dinner time but that she’d make certain that he returned my call. I decided that, because we’d agreed to attend a photowalk that evening, we’d still go just so that we’d be in the company of friends. I thought that Alex would not want to go out but he was still so shocked that he would have done anything I suggested.
While on the ferry to North Vancouver, my phone rang. It was Dr. Yee’s assistant telling me that he’d just had a cancellation and that Alex’s surgery could be moved up to the first week in September. I quickly conferred with Alex who agreed to the date change. Alex didn’t take many photos that evening, as I’m sure, his mind was spinning. I chose not to tell anyone our news until I’d heard from Dr. Kollmannsberger in the hope that there was a reasonable explanation for this news. Due to the noise at Lonsdale Quay, I missed Dr. K’s call but his message was a heartfelt apology for what had transpired earlier in the day. His explanation was that Dr. Yee had not been a member of Alex’s cancer team and therefore had, for some reason, not received Alex’s most recent lab results. It seems that Dr. Yee had determined Alex’s future based only on his original diagnosis and CT scan. His message included the fact that, when Nancy told him what had happened, he’d contacted Dr. Yee to discuss this enormous screw-up. He left his personal number so that I could call him that evening but, and perhaps I should have accepted his apology and returned his call so that he could go to bed with a clear conscience, I chose to spend the rest of the evening celebrating with Alex that he indeed had a cancer-free future to look forward to. I did return Dr. K’s call the following morning and smiled inwardly when he picked up on the first ring sounding relieved that I was calling. I cannot tell you how often I was grateful that Alex had the good fortune of being treated by an oncologist who regarded his patients as humans first and jobs second. I was willing to forgive Dr. K. this one hiccup in Alex’s treatment.
Just to add to my stress, the day before Alex’s surgery, my mother passed away. There is never a good time to lose your parent but honestly, she could not have picked a worst time to die. I decided not to share the news with Alex as he already had enough to deal with so, while he played a video game, I went downstairs, sat outside on the porch and cried. Our landlord must have heard me as he came out dreading that we’d received more bad news from Dr. Yee. When I told him what had happened, he went in to the house but returned quickly with two glasses of wine and we toasted my mum.
Alex’s surgery was scheduled to start at 7:30am so we had to be at VGH at 5am. Neither of us knew what to expect but Alex faced the unknown with such bravery that I could not have been prouder of him. We had not seen Dr. Yee since that day in the consulting room but the 10 minutes we spent with him in the OR prep room, made me appreciate that Alex had a very passionate surgeon about to attempt to take out 13 lesions and leave him with enough lung to lead a normal life. Dr. Yee reiterated the hope that none of the lesions would contain teratoma. After kissing Alex and telling him that I’d see him in Recovery, I spent the next seven hours sitting in the cafeteria, receiving condolence messages from friends and family who had heard about my mum’s passing.
After the surgery, Dr. Yee came to let me know how it had gone. He was noticeably excited. I could not imagine someone operating for seven hours being that animated. He explained that one of the tumors had begun growing into the heart muscle but that he had managed ‘to get the bugger out’. It’s nice to see that a challenge can still excite a seasoned surgeon. Perhaps it was because I did not appear to share in his enthusiasm that he quickly hid behind his professional face and told me that Alex was fine. I told him about my mum and, without thinking, he wrapped his arms around me. We sat for about 20 minutes while he asked about my mum and told me a bit about his parents. He apologized that he had to return to the OR but called his resident to take me to see Alex. I don’t think that this young man was too happy being used as an escort but, when your boss tells you to do something, you don’t question his orders. From this point through to the end of Alex’s lung surgeries, we had a very unique relationship with Dr. Yee.
Taking care of someone who has just had lung surgery is very different than taking care of someone going through chemo. During chemo, there was the expected vomiting, exhaustion, constant need to urinate, lack of appetite, boredom, fear, IV site pain, requirement to walk to reduce the formation of blood clots, and stress. BCCA also had enough staff to make certain that no patient was ignored. There was never enough staff at VGH to deal with patients’ needs. Without a family member or friend, patients’ buzzers often went unanswered. During his 16-day stay in hospital, I spent most of the time trying to make him comfortable. This meant changing the sheets on his bed a couple of times daily; giving him sponge baths; washing his hair; helping him to the washroom; trying to relieve his constipation that he developed as a side affect of the anesthetic; convincing him to walk around the 10th floor at least once every two hours; and watching over him while he napped. It was exhausting! By the time I’d leave his room at 9pm, I was ready for bed.
Ross arrived in late September to celebrate Alex’s 25th birthday. It was wonderful seeing him again after almost 10 months. Ross accompanied us to the appointment with Dr. Kollmannsberger where we were given the incredible news that there was no teratoma in any of the 13 wedges. Alex now had to make a decision regarding his second lung surgery. Dr. K. explained that because there was no teratoma in the first lung, he was now pronouncing the second lung also teratoma-free. This meant that Alex could decide not to go through with the second surgery. Alex emphatically stated that he wanted all of the lesions gone. Now that the cancer was gone, he wanted every lesion gone as well. He knew that the second lung would be more torturous than the first because it was the lung on the same side that had to be drained back in January. This meant that the tumors had been more numerous and therefore, Dr. Yee had a larger job to do.
Because it had been decreed that teratoma was not a possibility, Alex was no longer considered an emergency. The earliest Dr. Yee could operate was early December. We were concerned that we might not make it home for Christmas. In hindsight, I’m glad that Alex had those two months to rebuild his physical strength. I discovered a kinesiologist, who specialized in chemo rehab. She was wonderful! She worked with Alex to improve his lung capacity to the point that he could walk three blocks back to our bed-sit without pausing for a rest.
Alex’s second surgery was not as frightening as the first. No one looks forward to lung surgery but Alex is a very rational young man. He’d been through it once and, even though his relationship with Dr. Yee had gotten off to a rocky start, he now had utmost confidence in this man. He was also looking forward to going home when it was all over. He’d learned that Victoria was coming home for Christmas to see him. He had not seen his sister for almost two years so that was a special treat. Dr. Yee decided to take the entire lower lobe out because the blood left in the chest cavity had glued the lung to the chest wall. He decided that there were just too many lesions to take them out individually. Because we knew what to expect, Alex had taken it upon himself to discuss his post-op pain meds with the anesthesiologist prior to the operation. I was amazed watching my son use the proper medical terms when discussing the rules around epidurals with a man who would be responsible for keeping him alive as Dr. Yee poked around in his lung. Alex’s matter-of-fact discussion kept me calm as I realized that he wasn’t as worried as he’d been before his first lung surgery. Of course, this surgery also knocked the wind out of Alex but I do remember him waking out of the anesthetic with a smile on his face. This smile made my heart sing. During his stay at VGH, we were ready for any problem but none presented themselves. Alex knew how to breathe without making the drainage tube rub, he knew that walking would get him home sooner, the anesthesiologist visited him daily to make certain that his pain meds were adequate, and Dr. Yee visited him every couple of hours just to chat. Instead of 16 days in hospital, Alex was released in seven. In consultation with Dr. Yee, it was decided that we’d fly home to Ottawa on December 26th. By that time, it was determined that Alex’s lung could take the change in pressure without doing it damage.
2014 was a year of highs and lows, laughter and tears, exhilaration and discouragement, courage and fear. As the caregiver, I also experienced loneliness because Ross had to remain home due to his job, our pets, and our international student. Yes, we had two friends in Vancouver whom I remain forever in their debt for everything they did for Alex and me but I made many new friends each of whom played an important role in our experience. I am normally not one who asks for help but quickly realized that I needed to learn not only how to ask for help but to graciously accept all offered help even if it made life a bit more complicated than necessary. I discovered that people truly are generous with their time and talents during a crisis. During chemo, I learned that my major job was to listen to Dr. Kollmannsberger, take notes, and make certain that Alex was aware of everything that was said. I spent my days while Alex underwent chemo, attempting to keep his spirits up. While he was with me during his two-week breaks, I’d make certain that he kept as active as possible. This kept his mind off his uncertain future and improved his physical strength that took a beating during chemo weeks. Because we were 5,000kms and 3 time zones away from family and friends, while Alex napped, I’d create mass emails detailing recent events, Alex’s reactions, our activities, and I’d sometimes include my own fears. Before sending these emails, I’d proof read them and more often than not, delete my fears because often, seeing them in print or reading them out loud, made me realize that I could deal with whatever problem presented itself. Even though we now live in a world of instant information, I chose not to Google anything to do with testicular cancer. Ross and my brother-in-law did and some of the ‘answers’ they found scared the living daylights out of them. When I had questions, I called either Dr. K. directly or the BCCA’s patient hotline, which was available 24-7. No question was ever considered too trivial and I never turned in for the night with an unanswered question determined to ruin my sleep.
I do apologize for this blog going on for such a length. It is my hope that my experience may help others just starting on this journey. Caregivers and their needs are often ignored as the patient is considered to be the star of the show. If you find yourself in need of help, reach out and ask for it as your job is far too important to your loved one for you to not be there when they need you the most.
Victoria’s students made Alex 1,000 cranes in hopes of helping him beat cancer. It worked!!