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Posts Tagged ‘Books’

Survivor Spotlight: Kevin Hall

 

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.

 

Testicular Cancer Survivor Kevin Hall and his wife Amanda

 

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.

 

Testicular Cancer Survivor Kevin Hall and his three children

 

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

 

 

Testicular Cancer Kevin Hall's book Black Sails White Rabbits

 

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

 

 

Cancer and Sexuality

Can you speak about sexuality issues associated with being a young adult with cancer?

We have been contacted on behalf of an editor who is composing an eBook for Adolescent and Young Adult (AYA) cancer patients to help address sexuality issues that they face after their cancer diagnosis. Your experience can help pave the road for those future survivors so your input is greatly appreciated.

 

Papers can be 500-1000 words in length. The format is to identify the problem/issue and provide take-away tips or advice for readers, based on the writer’s personal experience.

 

Topics include:

  • body image (loss of body parts ie. breast, testicle, hair, etc)
  • changes to anatomy and the physiology of sexual functioning
  • issues specific to LGBT survivors
  • strategies for dealing with scars and other visible reminders of cancer (hair loss, weight gain/loss)
  • information about meeting potential partners, dating, hooking up, maintaining established relationships
  • tips for disclosure about cancer (when and how to disclose to a potential partner)

 

If you would like to participate, please contact Mike Craycraft in confidence and we will put you in contact with the editor.

 

Thanks for Your Consideration,

Mike Craycraft

 

 

 

Survivor Spotlight: Ron Bye

“Memoirs of a 30 Year Cancer Survivor”

Ronald ByeDiagnosed August 8, 1975

 

We all have a story to tell.  A good story has a beginning, middle and an ending.  My story has many beginnings and thankfully no ending as yet.  My story is of survival, rebirth, finding my voice and finally healing.

 

Just a few years after Richard Nixon declared war on cancer, I heard those fateful words, “you have cancer”.  I was 20 years old and had been married 11 months, 3 weeks and 2 days.  I was trying to find my way in the world and looking to start a life with my young bride.

 

It was June 1975 and I had some nagging groin pain which I attributed to working in construction and a probable hernia.  I went to the emergency room to get checked out but they could not find anything and recommended I see an urologist.  I for the most part ignored the suggestion as I really did not want to see a doctor but my wife kept pushing me to go.  Finally in early August, she made an appointment for me and simply told me to go.  That was August 6th 1975 at 3:30 pm.  After the usual 20 questions and extremely awkward “drop your pants and let’s have a look”, the doctor looked me in the eye and said “you definitely have a problem Ron”.  My heart stopped beating as panic spread through my every fiber.

 

I was admitted to the hospital the following day and had surgery the next day.  A right radical inguinal orchiectomy was performed and later that day I was given the grim news.  The diagnosis was “pure embryonal carcinoma with vascular invasion”.  I had testicular cancer, a virtual death sentence in those days.

 

I had not been sick since I was a child and had no idea how to react or deal with the news.  The hospital stay was a nightmare as I felt my life slipping away and so totally out of control.  I felt like a cornered wild animal scratching and snarling in feeble attempts to regain some level of control of my life and dignity.

 

I went home after a few days and spent the rest of the week regaining my strength.  That week was our first wedding anniversary and for a surprise anniversary gift my wife gave me an 8 track player (yes definitely dating us) and a John Denver tape.  I excitedly set up the system and plugged in the tape.  The very first song to play on that system was “Lady”.  For those of you that are unfamiliar with the song, it says “did you think our time together was all gone” and goes on to say “our time has just begun”.  How prophetic that truly was!

 

After a week, the doctor’s office called and said I needed to come back in and discuss my prognosis and future treatments.  I agreed rather expecting it would be “take two of these and call me in the morning”.  Apparently my urologist didn’t quite see it the same way.  He sat me down and proceeded to tell me I had a 50% chance of living 2 years and a less than 10% chance of seeing my 25th birthday.  He told me he knew of ONE patient with my pathology that lived!

 

Needless to say my head was spinning, I could hardly breath and my short life passed before my eyes.  I went home to my wife having no idea what the future would hold or even if there was a future.  I don’t think I even told my wife the specifics the doctor had conveyed to me, just that the prognosis was not good and that he wanted me to go to a major cancer center at either Dartmouth or the Mayo Clinic.

 

Somehow that evening I became a survivor determined to beat the odds.  In fact I became so focused on surviving and having a future I never again even considered I would not live!  Perhaps it was inner strength or denial or naïve or a combination of all of it, but I somehow found the strength to deal with the coming months of surgery, chemo, poking and prodding and maintain some level of sanity and will to live!

 

The same focus, determination and denial caused me to shut my story inside.  I told no one.  I had a dear friend of more than 20 years that did not know my cancer story.   Cancer was not something anyone talked about then and especially a young man with a sexual component or connotation!  It wasn’t until I faced the 30th anniversary of my diagnosis and my 50th birthday that I finally began to think back about what I had been through all those years ago.  I contacted the doctors, oncologist and hospitals and asked for copies of my medical records and proceeded to sit down and read them.  It brought back so many emotions I had locked away deep inside.  For the first time I really saw the fear, panic, shame, heartache and the pain I locked away.  The scars both physical and emotional.

 

I decided to write my story as a way of working through the emotions, a catharsis of sorts.  As I did this I began to realize I had not only locked away the specific emotions related to my illness, I had locked away most of my emotions in total.  For so many years I had feared that allowing myself to feel any kind of emotion would open Pandora’s box and allow all the pain and hurt and fear to escape.  I had in essence lost myself.

 

Through this process I began researching all I had endured, the surgeries, the chemo, the statistics and slowly became more aware of the greater cancer community of which I had hidden myself away from.  I read about so many other survivors including Lance Armstrong and learned of the first LiveStrong Summit is 2006.  I had never interacted with another cancer survivor in the 30+ years since my diagnosis.  There were no support groups then.  The internet was in its infancy and available only to academia and so I was learning for the first time I was not alone.

 

I applied to the LAF Summit fully expecting to be declined but low and behold I was accepted.  My wife (of over 30 years at that point) told me I needed to go there alone.  I needed to face my fears and to once and for all learn I was never alone.  Not then, not now.

 

To say that that experience changed my life is one of those huge understatements in life!

 

I had been miraculously cured 30+ years before, but it was not until I began to interact with other survivors and to share my story that I finally began to heal………….

 

Survivorship is not about living or dying.  It is not about the physical being.  It is a state of mind.  An acceptance of one’s situation and a determination to live each day to the fullest extent possible no matter how many or few we have ahead.

 

Survivorship starts the day of diagnosis and evolves and adapts as our situations change.  It may mean one thing the day after diagnosis and yet something else 30+ years later.

 

It took me over 30 years to heal and make peace with my cancer and that only came when I began share my story.

 

People have told me I have an inspirational story but honestly I only did what I had to do and what allowed me to get through some of the most horrible days.  I believe we all have our crosses to bear and that although my experience was no fun, I also know so many suffer so much more than I ever did!

 

I also know we have no idea how much we can truly handle until we are forced to do so!  The strength of the human spirit is truly remarkable and resilient.  I said in the beginning my story had many beginnings as I feel I have been granted so many rebirths in my life.  I was reborn when I came out the other side of cancer and yet again when I found my voice and finally began to heal through getting involved with other survivors and advocacy.

 

I did in fact write my survival story which started strictly as a cathartic process intended only for me to help me finally heal.   But at the urging of those few individuals I shared it with, it has now been published as a book, “Memoirs of a 30 Year Cancer Survivor”.

 

I can honestly say that the “fear of recurrence” never really goes completely away, but we do learn to deal with and manage it.  I also know today, that if I ever have to face it again, I know I can endure and have found inner peace.

 

I can only hope and pray that my sharing my story helps someone to know there is indeed life after cancer.  There is hope.  You are not alone!!

What Happens When We Don’t Talk About Testicular Cancer

Together We Will Win: What Happens When We Don’t Talk About Testicular Cancer. A Young Man’s Story.

“This awe-inspiring and gut-wrenching story of Ian’s battle with testicular cancer is a must read for anyone with a young man in their life. Readers will gain a personal understanding of cancer and its treatments and find it unimaginable that information on testicular cancer isn’t required education.”

 

I included this quote because it was the endorsement I wrote just after I finished reading the manuscript. Friend and author Karen McWhirt gave me the honor of reading her manuscript before the book was published.

 

Reading the book prior to publication was a huge responsibility and who knows what I would have done had the book not been an incredible creation. I know you can’t exactly tell a friend that you don’t like their book but as a mother who lost her son to testicular cancer I knew that Karen could handle the truth if I didn’t like it.  Fortunately, the book was so incredible that all I could do was spew accolades Karen’s way. She was even kind enough to publish a copy of a personal email I sent her inside the book. Her relationship with her son, Ian Drazick, reminded me at times of mine with my own mother.

 

Ian was diagnosed with advanced testicular cancer at the age of 19 and after a short 4 month battle he died at the age of 20. Karen was his mom and his caregiver the entire time. Before he died, Ian asked his mom to write his story, “…so other guys will know, and they won’t have to go through what I’ve been through…” he said. Karen told Ian she would share his story with others and fighting through the bad days and painful memories she kept her promise.

 

Written in Ian’s voice, Together We Will Win, captures the true experience of what it is like to battle advanced testicular cancer, face intensive chemotherapy and endure exhaustive radiation treatments. Based on the journals Karen kept, you will experience from the early stages of diagnosis trough the last days of life what testicular cancer can do to a young man’s life.

 

Ian dreamed of a time that testicular cancer was talked about as much as other cancers so that other young men wouldn’t be diagnosed at late stages like him. Dreams are very powerful things and while Ian can no longer do it on his own his dreams can still come true. Read Together We Will Win and encourage the young men in your life to do the same. What happens when we don’t talk about testicular cancer shouldn’t happen to any more young men.

 

In the interest of testicular cancer awareness Karen has generously created a book donation program to offer a copy of Together We Will Win to libraries around the world. The program also offers the ability for you to donate a copy in your name or in the honor of a loved one to your local library.

 

On a more personal side, I met Karen in February 2008. I had been trading emails with a mother in the UK that had lost her son to testicular cancer. This mother was doing a lot of education in schools about testicular cancer and I wanted to learn from her because for some reason it is very difficult to get into high schools to talk about testicular cancer in the U.S. She told me that there was a lady in Kansas that was trying to do the same thing and that perhaps I should contact her. I fired off an introduction email to Karen and the rest was history. Karen has been a personal mentor to me countless times and her strength as a mother is simply amazing. Ian’s story and Karen’s strength have greatly impacted my life. I can’t explain how a young man I never met and a mother I have yet to meet face-to-face can influence my life so much. All I can say is that it has happened.

 

This summer, to celebrate my 5 year Cancerversary, I traveled to Wales to do a memorial trek up Mt. Snowdon to honor those young men that have died too early from testicular cancer. On that trip I felt it was my duty to honor Ian and Karen by taking a banner with Ian’s name on it to the top of Mt. Snowdon. I also wanted to do it to show Ian that his dream is still alive and that other guys will know and other guys won’t have to go through what you did Ian.

Together We Will Win

 Thanks for Reading,

 

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