Occupy Ball Street is our entry into the sliderocket 2012 non-profit contest. With enough views we could win $10,000 so please help spread the word on our short presentation.

Thanks.

Diagnosed 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 6^th 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 25^th 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 30^th anniversary of my diagnosis and my 50^th 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!!

25% of each purchase is donated to the Testicular Cancer Society via eBay Giving Works

A Charitable Touch Foundation understands that the key to successful outcomes with testicular cancer starts with early detection and treatment. This simple message in echoed in their high style, classic design TOUCH YOUR NUTZ – Jewelry That Cares! collection.

The TOUCH YOUR NUTZ line allows you to show your awareness, share your awareness, rock your style and support the Testicular Cancer Society at the same time.

Get your choker, wrist band and Key Ring today.

A Charitable Touch Foundation is donating 25% of your purchase to the Testicular Cancer Society via eBay Giving Works.

Sport Your Support Today. These are NOT your kid’s Awareness Bracelets so be an adult and show your support!!

“Ouch…Lynn you can’t jump on my lap like that, I’m telling you it hurts.”  That was my reaction that Saturday evening, in late December of 2007, as my wife innocently sat on my lap to put her arm around my neck and give me a kiss. In female language that pain and reaction translated to “You are trying to say that I’m fat, aren’t you?” I still to this day love to hold that over the head of the greatest wife in the world.

That pain proved to be a stage II non-seminoma tumor engulfing my left testicle. The germ cell tumor contained several of the most aggressive types of testicular cancer cells, including choriocarcinoma, embryonal carcinoma and yolk sac cells. According to the pathology report, the testicle and tumor was 99 grams, the size of a large egg and from the time of the ultrasound to the orchiectomy, it had doubled in size in those 6 days. This was clear evidence of how aggressive and serious this cancer can be. Luckily, I studied Health Education at Northern Illinois University and knew how important self-examination was. I was fortunate to catch this extremely early and that was the foundation of my positive thinking.

Having a doctor tell you that you have cancer is one thing but having him tell you that he is going to remove one of your testicles was truly the biggest loss of the day! I could deal with the cancer but to take one of my boys??? “SHIT”…I thought to myself, not me, I was only 27. Now I’m going to be like ESPN analyst John Kruk. Damn, now I’m like 3^rd baseman Mike Lowell, the infamous Lance Armstrong or Darren Jackson, a broadcaster of the White Sox. CRAP…. Now I have to think ahead of any situation that might open a window for someone else to make a joke. Which reminds me. Here a few things you must keep in mind when you are around me or another testicular cancer survivor.

1-If you are ever golfing with me and I slice a drive into the rough…Never ask, Hey Hogrefe you know where your ball went?

2-When I hit my second shot on that first hole and lay my 8 iron on the green 10 feet from the hole…Never yell from across the fairway…“ HOGREFE…NICE BALL”

3-When you are sitting at a poker table with me and I’m holding the Ace, King of Hearts and I flop a flush…Never say when the hand is complete… “Hogrefe flopped the nuts”

4-Never when you coach a football game with me…Come into the halftime angry and tell your team to play balls out in the 2^nd half….

5-When I am watching a baseball game with you and I ask the count…Don’t be a smartass and reply two strikes and one ball…

All joking aside, this was some serious shit. After that day in January, I had successful surgery to remove the tumor and testicle. The problem was, the two tumor markers in my blood hadn’t fully returned to normal. In other words, somewhere in my body there were still some looming cancer cells. The plan was to monitor the levels for the next 6 weeks to see if the counts would return to normal. I still remember giving blood often on Thursdays for those six weeks and then eagerly calling the office the following Monday to hear the results. Unfortunately, the news on those Mondays was never the news we wanted to hear.  Finally, when the 6^th week approached, Lynn, the Dr. and I knew it was time to find an Oncologist.

Now it hit me. I was scheduling chemotherapy and looking at the calendar of when to start. My parents had already lost a son to cancer in 1979, the year before I was born, when my 5-year-old brother Jeff lost his battle with Leukemia. I was determined to give my family a victory this time around.

I was excited to get this over with, fight it, beat it and return to normal. And that’s exactly what we did! I underwent 3 rounds of BEP chemotherapy from February-April 2008.  As any survivor knows, there were ups and downs during that stretch of time. I have had the opportunity to speak/mentor some other guys that are embarking on the same journey that I traveled. My advice is simple. STAY POSITIVE, roll with the punches, AND FIGHT!

Jason During Chemotherapy

 
Things slowly began to return to normal that first year. Although my hair came back blonde and curly, it too returned to normal over time! Nearly two years to the day after my last chemo treatment, Lynn and I returned to the same hospital. This time we were welcoming our first daughter Madelyn on April 21^st, 2010. PROOF… That all you need is one!

Jason with wife Lynn and daughter Madelyn

 
It was on my three year CT scan in April of 2010 that we encountered another hiccup. I was informed that my CT scan showed two enlarged lymph nodes. As it turned out, there was a type of cell in the original testicular cancer that doesn’t respond to chemotherapy. This cell is called teratoma. Now teratomas are good in the sense that they do not metastasize, in other words they stay to themselves. On the other hand, they continue to grow, could turn into other types of cancer and need to be removed.  The lymph nodes were located adjacent to my aorta and near my spine and would require obvious invasive surgery to be removed. Lynn and I started the journey to find the right doctor to perform the Retroperitoneal Lymph Node Dissection (RPLND).

Our first trip was to Indiana University. We all as testicular cancer survivors should be proud of the facility that is located there in Bloomington. It was there I was able to meet Doctor Lawrence Einhorn, one of the men responsible for creating the chemo concoction that helped save many of our lives. What a powerful moment it was to say, “thank you” to a man responsible for helping save your life.  This was a fantastic place but I chose, however, to have the nerve sparing procedure performed closer to home at the University of Chicago by Doctor Scott Eggener. I can’t say enough about him and the staff there at the University of Chicago. I was not prepared for how painful this surgery proved to be. But like chemotherapy, I attacked it, beat it and returned to normal over time.

There are so many people to give thanks for all the nice gestures over the past 4 years. My loving wife and family, my caring friends, my co-workers and second family at Fremd High school, my doctors and nurses, my instructor at Northern Illinois University who demanded we self-exam, the list goes on and on. The people who I feel deserve the most thanks are those that have donated to research over the years. With the help of these selfless people, our road to recovery was so much easier than those who went through the same thing years before I did. It is that reason that I feel the need to pay it forward. This year, the 4^th annual  “1 Ball Pub Crawl” will be looking to eclipse $45,000 raised for cancer research and awareness. We always love to have fellow 1 ball survivors and their friends to share in the fun. Mark your calendars for Sat June 23^rd 2012 in Chicago IL.

Join the fight, help raise money and raise awareness in the fight of all types of cancer!!!!

“Cancer may take our hair and our balls, but it can’t take our sense of humor or our spirit” -Jason Hogrefe

Third Annual One Ball Pub Crawl 2011

Well, we have posted about them before but now they are together on Ian’s Episode: Together We Will Win on The Ordinary Guy Network.

Take the time to listen to Karen McWhirt, author of  Together We Will Win and Jon Lewchenko, founder of Down With The Cause are together as they talk about testicular cancer. It was a great interview that hits home as to why testicular cancer awareness is so important. Listen today and then tell the young men in your life about testicular cancer tonight.

Also, be sure to check out Karen’s book, Together We Will Win and Jon’s organization Down With The Cause.

To learn more about Karen and Jon check out our previous posts: What happens When We Don’t Talk About Testicular Cancer and Are You Down With The Cause.

Remember, talk to the young men in your life about testicular cancer.

Not familiar with First Descents? Well, you should be.

First Descents offers young adult cancer fighters and survivors (ages 18 to 39) a free week-long outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.

Their outdoor adventure challenges are designed to push your limits and make you face you fears. In return you will regain the confidence and self-efficacy that cancer often takes away.

Don’t feel intimidated. First Descents realizes that we are all individuals and the adventures will be tailored to your experiences/abilities and they are there to help make sure you reach your week’s goals.

Want to learn more? Check out the First Descents website and watch the video below.

OK, you have seen the adventure, now go get it.

Have Fun,

In the Spring of 2001 I was a healthy 44 year old racing to keep up with a 2 1/2 year old adopted daughter. When my right testicle became swollen — it happened very fast, in just a few days — I decided that my daughter Chloe must have kicked me in the groin when I was trying to strap her into her carseat.

When my testicle remained swollen after 2 weeks I went to see my doctor who immediately referred me for an ultrasound exam. I could tell by the serious attitude of the ultrasound technician that something was wrong. In a matter of days I was scheduled for an orchiectomy — surgery to remove a testicle — which was performed by a no-nonsense urologist named Dr. Purohit.

Just before I was wheeled into surgery, I was visited by an old friend who had a twisted sense of humor. I looked up from the gurney and said to him “Thanks so much for being here on the day that my right ball is being cut off.” His reply was “I wouldn’t have missed it for anything.”

After surgery, I received a pathology report that told that my testicular tumor of pure seminoma had been removed, and that I had “possible vascular invasion.” In other words, there was a chance that cancer might have made its way through my bloodstream to other areas of my body. Because I am an eternal optimist, I went to my radiation consultation and told the radiologist that I wanted to pursue a path of “Surveillance” and skip radiation treatments. My hope was that cancer cells hadn’t invaded my system.

Choosing surveillance had 2 consequences later down the road. The first was that a cancerous tumor did indeed develop in a groinal lymph node. The second was that when I applied for life insurance some years later I had a black mark on my record. “Patient refused treatment,” is what the doctor had written. I was surprised by that, as surveillance is often a reasonable option after surgery, even though it didn’t work out in my case.

My back began to hurt in the Fall, I avoided seeing the doctor until December, hoping that a sore back was just a sore back. When I did visit the doctor, who really should have been asking me to come in every few months for surveillance exams, he ordered an immediate CT scan. The day after Christmas he called me on my cellphone and told me “You need chemotherapy.” When the call came my wife and I were on the road heading to see relatives in Seattle, but we made a quick return to Southern California.

I was very lucky to have a large bank of sick days available to me at the community college where I teach. When I called my Dean to tell him that I would miss a semester, he was very supportive. I was touched when the President of the college called me at home and told me “Please let me know if there is anything I can do for you.” I also had a good health plan that covered my treatment, and did not suffer financially. As I have learned what so many go through in financial terms when fighting cancer, I realize how tremendously fortunate I was in that respect.

Chemotherapy wasn’t as bad as I might have expected — at first — and I was given some help with nausea control. Still, as the cycles progressed I looked older and felt weaker. Unlike many patients who lose weight and appetite, I decided to go for “comfort eating” and actually put on weight. I had good days and bad days, and coped with the boredom and lack of energy by listening to a lot of music and reading every magazine in sight.

After the second cycle of chemotherapy, there were some very dramatic developments. The most shocking was that my wife of 9 years asked for a divorce. She had decided she needed to return to school and complete her degree, and having a very sick husband was not something she handled well. Here is my perspective looking back: cancer is an earthquake and if anything in your life is shaky, cancer will break it loose. It certainly shook loose a weak marriage.

To those of you who have supportive wives, girlfriends or partners helping you deal with cancer, tell them from me that they are extraordinary.

A few days after my wife left there were 2 more dramatic developments. My doctors told me that I had “remission” and that my cancer was responding beautifully to chemo and was almost entirely gone. On that same day my brother in law Gary was informed of the death of his sister who had been fighting a brain tumor. One of the things that I as a cancer survivor will always be haunted by is the randomness of mortality. Why was I going to live, when another had to die?

During my last 2 cycles of chemo friends and family really came through for me, and I marked off the days on my calendar. Sometimes I felt OK, other times I felt horrible. One day I decided to walk to Carl’s Jr, about 2 blocks from my house, for a milk shake. The walk there went OK, but I sat in the restaurant for 2 hours before attempting to walk home. I had completely exhausted myself just going there.

By my last treatment I was anemic, but cancer free. To celebrate the end of my last cycle my parents took me to Mimi’s Cafe for a nice dinner. I enjoyed the meal, and then raced to the restroom to have one more bout of chemo vomiting. It was so awful that it was actually funny.

Within 6 months after finishing chemo, I met Linda, a news editor, and we began to date seriously. Before we married I told her not to expect to have children with me as I was pretty sure that chemo had ruined my fertility. That turned out to be quite wrong. She became pregnant very easily, and we now have 2 wonderful daughters together.

It has been nearly 10 years since my cancer first appeared, and I can honestly tell people who ask that cancer had many positive aspects. “Even the bad days are good days” is a saying I use often, thinking back about the difficulty of chemo, and the fear of illness. I have more empathy for people who are dealing with illness, and am probably a bit more “real” as a person in general.

The message I want to give to those dealing with testicular cancer is this: deal with it, prepare to get through it, and plan on enjoying life tremendously when it is over. You can do it.

The Seed Family, Thanksgiving 2011

Good deals for a good cause just got a lot easier. The Testicular Cancer Society has now partnered with GoodSearch.com which means that every time you shop online a portion of your sale can be donated to support our cause. They will also make a donation for every time you do a web search (about a penny a search) via their Yahoo based search engine.

Simply, go to GoodSearch and enter the Testicular Cancer Society as your cause and click “Get started.” You can chose to continue without registering or you can register to track how much you have raised for the cause.

With GoodSearch you can shop at over 2500 stores and they will give to our cause. They also offer coupons so that you can save and they will still give to our cause. There is even an option for GoodDinning, where yep, you eat and they give to our cause.

Why not shop, search and dine like you normally would but do it through GoodSearch.com and do it  for good.

You can watch their video to get a better idea how it works.

Thanks for Your Support,

“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,

with the Testicular Cancer Society.

The Testicular Cancer Society is now registered with the eBay Giving Works program and 10%-100% of each of the designated sales will be donated to helping support the mission of the Testicular Cancer Society.

Buyers can visit the Testicular Cancer Society eBay Giving Works page and click on the “Buy” tab to search for items that go to help support our cause. The page lists items that other sellers have dedicated a portion of the sale as a donation to the Testicular Cancer Society.

Sellers can now designate 10%-100% of the sale of their listed item to be donated to the Testicular Cancer Society. As part of the donation eBay will discount your listing fees. Your item will also feature the eBay Giving Works ribbon which has been shown to increase the amount people pay for items. This is a great way to sell some items, make some money and support our cause. Sellers can refer to more detailed information about listing items on eBay Giving Works.

It All Adds Up!

Go to the

Testicular Cancer Society eBay Giving Works page

 and Support Our Cause.