Archive for April, 2016
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