You have no balls… I do not know how many times in my life I have heard that statement, it has to be thousands of times. Every single in reference is based on the idea of me not being macho enough, or not having the guts to take on a challenge. I’m not saying that I am a wimp, but men tend to challenge each other’s “testicular fortitude” for basically anything.
Taken literally most people don’t really think about that statement, but for me, a bilateral testicular cancer survivor, this is a fact of life.
I was diagnosed the first time, on February 7th, 2007. At 22 years old, and in college, the last thing on my mind was cancer, so as you could imagine this diagnosis hit like a ton of bricks. I will never forget the moment, sitting in my Urologist’s office, (at that age I do not even think I knew what a Urologist was) he was telling me that I had cancer, I was in such shock, the doctor had to call my parents to explain the situation. Speechless, the doctor explained to me what the next steps were, and he noted how from the start that this cancer can be beaten. Moments after my diagnosis he was giving percentage chances of survival at 90+%.
Lucky, for me I had only felt the lump down there three days earlier, a simple self-examination. I cannot express how important my next actions were. Like I said early, at the age of 22, I could have felt the lump, and went on with my life, at that age any man basically feels indestructible, so it was pretty obvious that cancer was not on my mind. However something did not sit right with me, and I made the decision to not wait, I was in my primary care physicians office the next morning, and two days later I was in with the urologist, and by February 9th, I was having surgery to remove one of my testicles.
Seeing that this was such a quick turn around, I got even luckier to find out that my cancer had not spread, it was localized to the testicle and there was no need for chemotherapy or radiation. My treatment plan was to start a comprehensive tracking program to make sure the cancer did not come back. In the first year, monthly blood work checks, x-rays and cat scans; second year every-other month, and so on. I was told that at five years you are considered cancer free, and have a clean bill of health. I was starting a long progress of being in a doctor’s office way more than I ever wanted, but I knew it had to be done.
That takes us to May 5th of 2010. My wife and I (at the time we were just dating), had completed the inspection on the home we were about to purchase the night before. I had the engagement ring ready to go for the first moment we were alone in the house together, it was a joyous time, and then I felt a lump again. I did not wait, within hours I was at my urologist’s office (this time I knew what that doctor treated) and was being told, you have testicular cancer again.
Being told the second time that you have been diagnosed with testicular cancer was harder than the first. I had been in a comprehensive plan to track and make sure it didn’t come back, and questions lingered. How would I start a family? What does this mean for my sex life? If we had been tracking it so diligently, how did this happen? Has the cancer spread this time? Without a doubt, the most mentally exhausting moment of my young life.
This time around things didn’t move as quickly. The day I saw my urologist I was told in order to have a family I would have to cryogenically freeze my sperm. I would have to perform the act multiple times on multiple different days so that the center for reproductive services would have enough. I was also told that with the removal of my second testicle, I would not produce testosterone, and as such I would need to start and continue through the rest of my life testosterone replacement therapy. On May 28, 2010 I had surgery to remove my second testicle, and shortly thereafter I was told that again the cancer did not spread. Phewww! However in order to really make sure things were not going to come back my oncologist suggested one round of strong chemotherapy. Like the first time I was diagnosed I sought a second opinion, but unlike the first time I was given a different option.
My second opinion physician suggested that chemotherapy was one of a number of options, but tracking the disease as we did the first time would also be an option. This was without a doubt the hardest decision I had to make. I chose to not go through chemotherapy and track my disease just as we did the first time. I am still counting the days to May 28th, 2015 (so close).
Being diagnosed with testicular cancer or any type of cancer is a struggle. It drains you physically and emotionally, it stresses family members and friends, and it makes you question some of the bigger picture in life.
As I mentioned earlier at the same time I was diagnosed I was ready to propose to my then girlfriend, and ready to buy a house. I was also working on my Master’s Degree in Business Administration. Quite the busy time for me. It wasn’t until maybe 18 months later in which not having any balls really impacted my life. Lynne and I had been happily married for about six months, and were thinking about starting a family. In pure honesty, for most married couples these is an easy decision on when, and soon after that many couples are pregnant. For us it was completely different. We were faced with the challenge of when to start In Vitro Fertilization (IVF), and the cost of it.
After finding out that this type of treatment was not covered under either of our insurances, my wife and I had to decide how to pay for the $16,000.00 for the treatment. With both of us fairly young in our careers and being home owners, the money was not just there for us to go and spend. For three years we grappled with the financial responsibility of attempting to have a child, throughout the process a number of married friends and family made wonderful announcements that they were expecting. This is mentally draining for a couple who wants to have children but cannot afford it. It is like being completely torn as you are incredibly excited for your friends, but completely upset that it wasn’t you.
Finally after making some incredible tough decisions, in September of 2013 we decided to go for it, the IVF was paid for and the medications where in our hand. However going through IVF does not mean any guarantees of having a baby. The process of going through IVF is painful and tireless for a woman. I believe that my wife went through more pain and discomfort than I ever did with surgeries or any testing; IVF requires that you to inject your wife with multiple medications on a daily basis for almost two and a half months. It requires multiple procedures for the women, including the harvesting of eggs, and placement of embryos. Once an embryo is placed it is a waiting game.
One of the biggest decisions a couple has to make when choosing to proceed with IVF is how many embryos they want to put “in.” In our situation we decided to place two healthy embryos. This means that if both take than we would be blessed with twins. Many IVF places will even put more in, but the best places are ones that provide a high pregnancy rate with only a placement of one or two embryos. Our treatment at the University of Connecticut Center for Reproductive Services in our state had the highest success rate with only placing one or two embryos.
Now to the good news, approximately a month after the placement of the embryos we found out Lynne was pregnant, we also found out that only one of the two placed embryos made it, we were expecting once child, what a blessing!
As a man, to be diagnosed with testicular cancer twice, provides itself with a number of different challenges. The reality of my disease is with me every day; however, I consider myself incredibly lucky. I have read and learned about many people who have been diagnosed with the same disease and because of the situation had to treat with chemotherapy and radiation, and of course, a number of men will die from this disease even with today’s advanced medicine and treatment.
Our son Joseph Anthony Buccheri is now 8 months old, and is the greatest thing that has ever happened to us. If I can provide any advice to anyone who is reading this, is that the mental part of going through the thought of treatment and cancer has been the toughest part, even harder to deal with was the mental anxiety and anguish of attempting to start a family. However, any survivor reading this can know, that no matter how down you are about it, the next time someone says “you have no balls,” you can smile and laugh knowing that in fact that no matter what, you do, and you should be proud of it.
Also check out Rocco’s story that was featured on the local news.
Two out of three 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.
In January 2015, the Testicular Cancer Society surveyed 1000 young men, age 18-34 in the U.S. and asked them, “Which of the following people have spoken to you about testicular cancer?” Respondents were given 5 multiple-choices in a multiple-answer format.
67% of respondents answered None of the Above
19% of respondents answered My Doctor
8% of respondents answered My Parent
8% 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 those most likely closest to these young men are not discussing testicular cancer with them in a time when these young men are in the age group most at risk for the disease. While testicular cancer can occur at any age, opportunities to educate those at highest risk are being missed.
These results were also consistent with a previous survey conducted by the Testicular Cancer Society in November 2013, which indicated 71% answered None of Above, 16% My Doctor, 7% My Parent, 6% My High School Teacher/Nurse, 4% My Sports Coach and 3% My College Professor/Nurse.
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 2015 survey indicates that only 1 in 3 young men know how to do a self-testicular exam.
The Testicular Cancer Society asked 500 young men, age 18-34, in the U.S., “Do you know how to do a self-testicular exam?”
32% of the respondents indicated Yes.
49% of respondents indicated No.
19% 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.
What is troubling about the survey is that the men surveyed, age 18-34, are also men that are in the age group most at risk for the disease.
In October 2014, the Testicular Cancer Society released their Ball Checker app in hopes of educating more men about how to do self-exams. Besides self-exam instructions, the app, available on iTunes and Google Play, allows men to schedule a reminder to do their monthly self-exam. You can learn more about the app at www.BallChecker.com
For more information on this survey, please contact the Testicular Cancer Society.
I wrote my personal story a few months ago when I finally felt ready to revisit some of the memories. I thought I would share it more to support those that may be experiencing the same struggles in life.
A little over four years ago I found a lump. With this lump I found complete fear, anxiety, and uncertainty. I was paralyzed with emotions. I’m unsure of the following 5 days leading up to surgery, as everything became a blur. I remember sitting in the waiting room with my mother. Everything seemed cold, the floors, the chairs – the people. The only warmth was from my mother’s hand holding mine. I recall not being able to walk on my own to the operating room. I became weak in the knees and fell in the hall as I was passing operating room equipment that was covered in blood from the prior individual that was in surgery. What was their illness? What was their fate?
As I was supported into this bright white room these questions quickly slipped away from my mind. I was frozen in fear. I found myself lying on a cold table – arms stretched out in both directions, naked, scared. I looked around the room and seen roughly 5 other people preparing various things. I.V and needles being placed in both arms – at the same time – as another individual began to write lines on my lower abdomen. Another individual approached me with a document that I had to sign – agreeing that no legal action could be taken against the hospital if I died – more fear. I was told to count backwards from 10, 9, 8, 7 – the walls melted.
I woke hours later – reaching down in disbelief and complete pain. I seen a nurse walking by and attempted to ask a question. I got as far as “Is it…?”. She immediately stopped what she was doing while nodding “yes”. She came over to my side and took my arm for a few moments in a supporting gesture. The only medical staff that had shown feeling towards me – and I never even got to know her name.
I was sent home later that evening, unable to walk straight, and heavily medicated. I kissed my mother, I kissed my wife. I held and hugged my son – and prayed for the child that my wife had been carrying for the past 3 months.
Now I waited – fear, anxiety, and uncertainty – with every ring of the phone. Waiting for the phone call seemed to take forever. I was unable to do anything on my own. I was depressed and had lost my independence. My wife helped me get dressed, showered, cooked meals, and even assisted me with using the bathroom. My wife that was 3 months pregnant- suffering from severe morning sickness – and still caring for our 2 year old son.
Three weeks after surgery the phone rang. My wife answered it however she had to come and help me out of bed to take the call, as the doctor would only speak with me – fear, anxiety, and uncertainty. The walk down to the living room was a mirror reflection of how I felt walking into the operating room.
I cannot remember this conversation. I can remember my mother and wife embracing me – warmth. The cancer had spread to my stomach, abdomen, and my neck. I spoke with my family, my friends. My father passed away from Leukemia when I was 8. My mother fought cancer a few times and had won. So, this is my fate? This is how it ends? NO!
I was back at the hospital within 24 hours being prepared for chemotherapy. My veins were collapsing so I had another surgery to have a PIC line placed in my left arm – a tube that lead to my heart to deliver the chemo into my blood stream. I came home and spent time with my family and friends. I got everything in order. Work, Bank, Rent – Everything – including my will.
Four years ago today I stated my first chemo. I had to change everything, and everything changed. I did not focus on how I felt – I couldn’t – nor did my wife, as the stress would not be positive for our unborn child. I fought – She fought – We all fought! My wife was not able to come to my treatments due to being pregnant. My mother and family came as often as they could – I preferred to be on my own, as I wanted my independence. I did not want to be seen for my physical appearance however for the strength I had found in everyone around me. The first week of chemo caught me by surprise. It was everything you think it is and even more. I adopted a routine – I took control. Nothing was going to fuck with me!
While at home it was an interesting juggle of things. I would be in the bathroom from midnight until the morning hours due to the side effects of the chemo. My wife would then be in the bathroom for most of the morning due to the side effects of pregnancy. This was a blessing on its own as we only have 1 bathroom.
Around the third week of chemo my hair began to fall out. I did not recognize myself in the mirror anymore. I felt sad and depressed for a brief moment – I took control. I did not want this change in my appearance to bother my son – so as I was looking in the mirror I decided to write my name with a nice bold spot as I removed my hair in little chunks. It took me almost an hour however I did it. I had a bald spot that said “Jon”. I went downstairs and eagerly asked my son to read it. It took him a moment and he sounded it out “Noj”? Apparently I forget to take into consideration that when you write using a mirror it comes out backwards. Lesson learned and we have never forgotten this.
As the first 3 weeks came to an end I was getting bored – and bored of being sick. I had read everything I could find about my form of cancer, joined all the groups online, seen all the specialists. – I was not content and very anxious as a result. It was time for another distraction. My wife was now 4 months pregnant and we had yet to renovate and establish a nursery – Mission accepted!
After taking the bus to Wal-Mart and Millwork I was set to begin my next task. Within 2 weeks the nursery was painted, furniture built – I was at peace – and exhausted.
I would often walk daily to the hospital for my treatments. I was blessed to meet extraordinary people during this time –sadly lost some of the bravest as well. As I was walking home one day I was stopped by the police. I was questioned as to if I had been drinking and using drugs due to my appearance. The officer did not believe me – questioning the marks on my arms. The officer continued to ask me if I have any dirty needles on me as he was talking into his radio – not paying attention to what I was saying – he had already made up his mind on me. I was asked for my I.D and provided it – along with my cancer patient I.D card and a long list of medications that I was prescribed. I smiled as he attempted to read them out loud. I now had his full attention – but didn’t care. I kindly turned down the drive home and asked to be excused. I walked the rest of the way home with a large question mark floating around in my head.
I got home and checked the mail – an eviction notice. I promptly went over to the landlord’s home and rang the bell. I was greeted by a new landlord that only opened the door a small crack. She promptly seen the letter in my hand and stated, “You don’t pay your rent – you’re out!” and closed the door in my face. I was exhausted and went home. I sat in the living room questioning what had just occurred over the past hour. I went into the kitchen to get some water. I looked around and was not pleased with the colour – another distraction had been found. Three days later the kitchen was repainted – and had a nice highchair to match!
I reached out for support and attended an office of parliament. Sadly this meeting can be summed up as to the same prior mentioned police officer for the way I was treated by the reception lady. After waiting for over an hour in the office to meet with someone I was told that no one would be able to meet with me. I was asked to sign consent forms to open a line of communication. I struggled to the desk area after being seated for so long. I began to read over the forms as the members of parliament exited behind me. I attempted to introduce myself however I was greeted by blank stares –I seen the hesitation in their faces as I reached out to shake their hands. I was again judged all too quickly. I left the office and never looked back – and never voted for him again. I should add that he lost the recent election. I returned home to my family.
I spoke with the housing tribunal along with some friends I had made along the way. I was no longer being evicted. Also we got a new landlord pretty quick after that – coincidence?
Days turned into weeks. I kept distracted – happy, full of humor and love, with a new aspect on life. I surrounded myself with those that I wanted to be like – people that treated me the way they wanted to be treated in return – unselfish and not materialistic – people that give back to the less fortunate and expect nothing else in return. I spent a lot of time with family – my mother was with me all the way.
On Friday December 18th I was told that the chemo was not working as my cancer cells had spiked. I went home – I was again lost. I found comfort in everyone around me and the ones I had met on this journey. I do not consider myself religious – however I prayed.
I prayed for my Son,
I prayed for my Mother,
I prayed for my Wife and Unborn son,
I prayed for my Family and all Loved Ones.
On Monday December 2st I arrived at the doctors to continue this fight. After being prepped for chemo again my fresh blood work results came back. Due to a “false negative” on Friday my tests were wrong.
I was in REMISSION!!
Apparently someone along the way had prayed for me as well.
Four years later I have 1460 days to be thankful for – surrounded by the best family and friends I could ever ask for.
Thank you for taking the time to read,
For Immediate Release: December 16, 2014
Funeral Day, a darkly funny feature film, joins forces with the Testicular Cancer Society via the crowdfunding platform Seed&Spark.
Several clicks after seeing a Tweet from director/co-producer Jon Weinberg, Mike Craycraft, the founder of the Testicular Cancer Society, landed on a crowdfunding page on Seed&Spark for the independent film Funeral Day.
“I immediately had to reach out to Jon and see how the Testicular Cancer Society could get involved in helping bring the film to life,” says Craycraft. “The film’s storyline was so close to my own that it really hit home.”
Funeral Day is a comedy about a young man who believes he has found a lump on his testicle and thinks he might be dying, so he skips his friend’s funeral (who actually did die of cancer) in an attempt to start living his own life to the fullest.
“Since Funeral Day is a narrative film, partnering with an outside organization wasn’t the first thing on my mind. It’s something I associate more with docs,” says Weinberg, “But after talking to Mike, the ability to make a difference by working together seemed like an exciting opportunity.”
After feeling a lump the main character in Funeral Day refuses to go to the doctor. This reluctance to see a doctor is not uncommon in men. Craycraft, a testicular cancer survivor, waited seven months after feeling his lump before he went to the doctor.
“For seven months I ended up living like I was dying. I even threw my own ‘going away’ party because I was so convinced I was going to die. But I never told anyone that’s what I was doing, or that any of this was going on,” says Craycraft. “This film is going to be an invaluable tool in helping us not just raise awareness about testicular cancer but to help change how guys address their health issues.”
As part of the partnership, the Testicular Cancer Society will help bring the film to fruition. In return, the society will be able to incorporate the film into their testicular cancer education and awareness programs. Both the society and the producers of the film hope that by engaging in co-promotion, more men (and the woman in their lives) will become aware of testicular cancer and reduce delays they have in seeking care.
“We chose Seed&Spark as our crowdfunding platform because they are all about making a healthier environment in which to make films,” says Weinberg. “Now we not only have the opportunity to bring a great film to life, but actually help make men’s lives healthier too. And hopefully bring some laughs along the way”
To learn more about Funeral Day’s Seed&Spark campaign visit: http://www.seedandspark.com/studio/funeral-day
Funeral Day is the debut feature film of co-directors Jon Weinberg and Ronnie Butler. It stars Tyler Labine (Deadbeat, The Rise of the Planet of the Apes, Tucker and Dale Vs. Evil), Tygh Runyan (Stargate Universe, the upcoming Versailles), Suzy Nakamura (Curb Your Enthusiasm, Horrible Bosses 2), Dominic Rains (A Girl Walks Home Alone at Night, Flashforward) and many others. It was written by Kris Elgstrand, an award winning screenwriter whose most recent film, Songs She Wrote About People She Knows, premiered at the 2014 Toronto International Film Festival.
Testicular Cancer Society is a 501(c)3 non-profit public charity to reduce the burden of testicular cancer by increasing education and awareness and providing support services to fighters, survivors and caregivers.
I applaud Willie Geist and Carson Daly who underwent a live testicular exam on the TODAY show as part of their “No-Shave Today” programming.
While the TODAY show may seem to be on the cutting edge their approach was a bit reserved. The first live testicular exam on television was performed on This Morning, a morning show in the UK, in 1999 by Dr. Chris Steele. I had the pleasure of meeting Dr. Steele in 2009 and we discussed how censored the U.S. media was about educating on testicular self exams.
When we spoke over 5 years ago we both joked that no one would have the balls to show real testicles on U.S. television and it appears our visions are still correct as the TODAY show exams were conducted with a bit of smoke and mirrors and cloaked behind closed doors. This is in contrast to another “real” live self testicular exam shown on This Morning again this week.
Testicular cancer is the leading cause of cancer in guys age 15-35, but it can occur at any age, so all men should know how to do a monthly self testicular exam. Self testicular exams are the best tool men can use to detect testicular cancer early when it is almost 100% curable. If caught in later stages the outcomes are not as favorable and the treatment burdens are much higher.
Geist, age 39 and Daly, age 41 are a bit outside of the age range at highest risk as are probably most of the viewers of the TODAY show. However, it isn’t just young men that need to hear these messages. Parents, partners and other loved ones need to be educated and encourage young men to perform their exams monthly and more importantly to go to the doctor if they notice something wrong.
Dr. Steele is still my hero as he has carried the world of testicular self exams on his back for the last 15 years. My second hero is testicular cancer survivor and a my great mate Darren Couchman who received a live testicular cancer exam on UK tele as well and also set the Guinness World Record for the Largest Simultaneous Self-Check for Testicular Cancer, of which, I was one of the participants.
I do wish the TODAY show could have used a few less sophomoric jokes and giggles and instead gave more information about the steps of the procedure. A simple diagram would have at least provided some real education and made the segment less of a media spectacle.
Thanks for Reading,
40 Years Ago Dr. Einhorn’s Discovery Segued to Saving Thousands of Men’s Lives.
Please join us in a celebration to Dr. Einhorn.
Voted as one of the Top 5 Advances in 50 Years of Modern Oncology Dr. Einhorn’s discovery of a cisplatin-based chemotherapy regimen for testicular cancer changed the ball game. The discovery revolutionized the disease from a 5% survival rate, for metastatic disease, to the overall 95% survival rate seen today.
We invite you to help us honor Dr. Einhorn’s 40th Anniversary and his contribution to the lives of those affected by the disease. We know that cancer is not a single person’s disease and we ask that the survivors and those around them say a few words about how Dr. Einhorn’s work has affected their lives.
Please leave a comment on this post or contact us privately and we will assemble your responses into a nice book to present to Dr. Einhorn. Including your name and location might be a great touch. This will not be a branded book coming from us but rather a collection of your stories coming from you. We’re just helping collecting your words, putting them into a book and delivering it to his office for a much deserved honor to Dr. Einhorn.
While I did not receive chemotherapy for my testicular cancer your work has afforded me the opportunity to meet hundreds of guys that have received it and that is because they survived. My diagnosis was an incredibly scary time but my resolve was knowing that the year I was born the survival rate for metastatic disease was 5% but the year I was diagnosed my overall chances of survival were at 95%. Thank you for your work in providing a “security blanket” to knowing I would survive. I am not sure what my life would have been like without cancer but I can tell you I love what it has been since my diagnosis. Thank you for giving me these years to experience it.
Thanks for Your Help in Honoring a Great Physician,
Once Again Stand Up 2 Cancer was an Awesome Event
I have been watching Stand Up 2 Cancer since the original event in 2008 and each year chills come to my skin and tears to my eyes. The event is amazing given the celebrities that participate and the fact that it is broadcast uninterrupted on all of the major networks. However, more amazing is the money they have raised and most importantly the impact and work they are supporting with those funds.
While watching this year four things came to mind that should generate questions and I wanted to address those questions.
What is the Role of Obesity in Cancer?
The opening scene started with Melissa McCarthy comedically running with a torch and a joke that she just completed 29 miles. Melissa handed off the torch to Steve Carell, who decided to take the escalator instead of running up the red carpet steps. Steve tossed the torch to Eric Stonestreet with Eric saying, “I don’t want to get sweaty.” I applaud all 3 celebrities for providing an entertaining opening but it got me thinking about exercise and the role of obesity in cancer.
According to the National Cancer Institute it was estimated that in 2007 obesity was the cause of cancer in 34,000 men and 50,500 women. This means 4% of male cancers and 7% of female cancers are being caused just because of obesity. Obesity is linked to increased risks of 8 cancers and most likely involved with more. I won’t get into the role of exercise on obesity or on cancer but I think the stats on obesity causing cancer are shocking and need to be addressed.
Why has Government Funding for Cancer Research Diminished?
At the beginning of the program, talking about the need and impact of Stand Up 2 Cancer, Robert Downey Jr. stated, “So much government funding for cancer research has diminished.” But, why? In September 2008, the Obama-Biden Plan to Combat Cancer promised to double funding for cancer research within 5 years, with focus on the National Institutes of Health (NIH) and the National Cancer Institute (NCI). However, the NIH reports that funding of cancer research since 2008 has decreased. So where did all of these promised funds go? I have no answer to this question but perhaps your politicians may know so why don’t you ask them.
How Common is Adolescent and Young Adult Cancers?
Stand Up 2 Cancer featured a lot of stories about cancer survivors and how cancer research contributed to their survival. Most of these patients were either pediatric patients or older adults. Where were the adolescents and young adult (AYA) cancer patients age 15-39? There are 6 times more AYA cancer cases, affecting 15-39 year olds, than pediatric cancer cases, affecting 0-14 year olds. I don’t think SU2C purposefully left out AYA patients. To be honest, perhaps there would even be justification to leave AYAs out. Cancer survival rates for AYAs have basically remained the same for decades. One of the reasons is thought to be a lack of participation and access to clinical trials that have been so valuable to pediatric and older adult cancer fighters. Raising awareness of AYAs and clinical trials is beyond the scope of SU2C but it does need to be brought more out into the open.
Will Crushing Cancer’s Testicle Kill it?
I applaud Ron Burgundy for making an appearance, entertaining us and declaring his distaste for cancer by announcing, “Lets grab one of cancer’s testicles and pop it like a plump water ballon on a hot summer day.” I just thought I would help educate Ron in that crushing testicles will not kill cancer or anyone for that matter. All of my testicular cancer survivor brothers are proof that one can live a long, healthy and active life without one, or two, testicles.
Once again, Stand Up 2 Cancer was amazing and I hope it was a huge success to raise funds for all of their programs to help cancer fighters live longer lives. The show had one purpose and that was to raise money and not to address other issues in the cancer continuum. The questions raised in my mind while watching the show were just from me reading between the lines.
Thanks for Reading,
I just learned that I helped find a potentially life saving MATCH for a bone marrow transplant.
I know, I’m not the match but it was the best that I could do.
When I heard the news today no one was here to see the goosebumps on my arms and the tears in my eyes but it got me thinking about how the whole story evolved so I thought I would share it.
On August 14th 2011, I participated in a Memorial Trek up Mt. Snowdon, in Wales, in honor of those young men that we have lost too early from testicular cancer. I was carrying a banner with the names of three young men that I wanted to especially honor, so I was excited and motivated by this. I was also happy knowing I was going to see many of my UK testicular cancer brothers and that the trip was part of my 5 year Cancerversary celebration.
During the trek we ran into another group of hikers that seemed to be rocking out the entire way up. Indeed, they were rocking out as Mike Peters from The Alarm/Big Country was among them and playing music as they ascended. I enjoyed the jams and later learned the group was part of Mike’s organization Love Hope Strength.
That evening at the hotel, I met several people from Love Hope Strength UK as I was eager to learn more about what they did. I learned that they were also located in the U.S. and that they got people registered on the bone marrow donor registry.
Joining the bone marrow donation list was something that I had wanted to do but never had. I felt that registering was part of my obligation of being a cancer survivor. After all, I was already an organ donor so why not donate bone marrow to save a fellow cancer fighter’s life. At least with bone marrow I could donate while I was still alive. I knew too that some testicular cancer fighters undergo bone marrow/stem cell transplants (luckily they can use their own bone marrow/stem cells) and I thought that perhaps I could encourage other testicular cancer survivors to register as well.
Upon returning to the U.S., I started to learn a bit more about Love Hope Strength and the bone marrow registry. I learned that their Executive Director at the time, Shannon Foley, even had a brother that had faced testicular cancer. Unfortunately, I also learned that as a cancer survivor I was not eligible to be a bone marrow donor.
Not being eligible to be a donor diminished my enthusiasm a bit. Then, in March of 2013, I was invited to participate in the Belfast Strut in Northern Ireland. This event launched the “Zero Campaign” in celebration of Northern Ireland achieving zero annual deaths from testicular cancer 3 times in 10 years. Amazingly, Shannon Foley and her fiancée Jeremy Henn were also in attendance and I got to spend several days getting to know them and Love Hope Strength better.
I retuned back home with a new mission. I realized that even if I couldn’t register myself, that I could help get others registered or even get them to register in my honor.
I decided to attend Vail Rocks, one of Love Hope Strength’s main events, in June 2013 so that I could learn even more. At Vail Rocks I got to see Mike Peters again and even sign his guitar that he was going to use on his U.S. tour. Imagine that, a cancer survivor signing a rock star’s guitar. If you didn’t already know, Mike Peters is also a cancer survivor so it is even more of an honor to get to sign a fellow cancer survivor’s guitar. I also got to meet Shannon and Jeremy’s families and many of the Love Hope Strength volunteers and supporters.
I volunteered for my first concert on July 26th 2014 at the Under The Sun Tour in Columbus, Ohio. I was basically the local lead and my dear friend Lisa, who was in treatments for a brain cancer recurrence at the time, was the first to volunteer to help. My friend Jason came to help as well. How amazing it was to be doing what we were doing. Here we were, two cancer survivors (one of which was back in the fight) attending a rock concert to help get people registered for the bone marrow donation registry and perhaps help save a fellow cancer fighters life.
I again took the lead and volunteered for a Flogging Molly concert in Cincinnati in March 2014.
While at 35,000 feet flying to the OMG! Cancer Summit for Young Adults in April I received a Facebook message from Jeremy Henn explaining that Katie Poppert, the Love Hope Strength’s National Medical Advisor was going to be in Las Vegas for the summit and may need some help so I volunteered for two O.A.R. shows while in Las Vegas.
I had a great time meeting Katie and she was going to be in Columbus, Ohio in May for Community for a Cure so I again volunteered.
To date, the events I have volunteered for have gotten around 175 people “On The List” to be potentially life saving bone marrow donors.
The amazing thing is that today, August 3, 2014, I learned that I have been a part of finding a potentially life saving match!! One of the people we registered at the Community for a Cure event is a match for a current patient in need for a bone marrow transplant.
Wow, what a trip it has been in the last 3 years. I have gone from knowing nothing to bumping into Mike Peters, to learning about Love Hope Strength, to meeting Shannon, Jeremy, Katie (and many other volunteers and supporters), to hiking up Vail mountain, to volunteering numerous times and FINDING A MATCH!!
Things have also changed along the way. Shannon has resigned as Executive Director and moved on to other ventures so congratulations to her. Unfortunately, my dear friend Lisa passed away but I know how proud she is knowing that I was part of helping find a match and that she was there at my first concert as a volunteer and my biggest supporter. Lisa was an amazing person. Can you imaging being in treatments, bald and attending a rock concert to help possibly save another cancer fighters life?
There is also one huge constant. Love Hope Strength is Saving Lives, One Concert at a Time.
Learn more about volunteering for Love Hope Strength and help save lives too.