My last post was all about how talking about cancer can be awkward for those who aren’t experiencing it personally, but talking about testicular health as a survivor can be just as hard. I've also shared about some excuses guys may use to avoid doing a self-exam regularly. The topic of testicles can be considered impolite, even if it’s coming from a place of education. One of the primary goals of ABSOT is to get these “private” conversations out in the open, but that’s easier said than done. So to help, a la Barney Stinson’s Playbook from How I Met Your Mother, I’ve crafted various ways to bring up self-checks and testicles into everyday dialogue, based on some real life experiences.
I was a prisoner of my past. My prison warden was someone called “I used to”. “I used to” would remind me of my previous accomplishments lifting humongous weights, running long distances, and various feats of acrobatics. The warden was quick to steal the joy out of my life and pull the rug out from under me whenever I attempted to regain the strength I was so proud of having before. I spent many days feeling sorry for myself and lamenting the things I could no longer do until one day I decided I was done with the suffering.
Although the Testicular Cancer Awareness Foundation is based in Grand Junction, CO, we are a nationwide non-profit organization, and #TCAFEast in particular has become a veritable force for testicular cancer awareness in the Mid-Atlantic region. TCAF Board members Dr. Phil Pierorazio, Steve Pake, Jason Greenspan, and several other TCAF volunteers all reside within the MD/VA/DC area, and were able to connect at the Baltimore Orioles game on July 18th for a night of raising awareness.
I had a great time in the Testicular Cancer Awareness Foundation tent at Vans Warped Tour 2017 in Columbia, MD last weekend with fellow survivor and TCAF Board Member, Jason Greenspan. I’ve been doing quite a bit for TCAF over the years, but booth volunteer hasn’t been one of them, so there’s always a first. It was a blast, and I very much enjoyed the mission of educating the predominantly young adult summer concert goers in-person about the disease that has changed my entire life.
Cancer. The bastard disease of humankind that kills without hesitation, without prejudice. It is one of the most dreaded words in the medical world, especially if you are a patient. Cancer will turn a world upside down, backwards, and inside out. And more than likely, cancer will be what kills me in the end. That’s a depressing thought to have I know. It’s one of those things that is just ingrained in my mind, and something that contributes to daily anxiety. Let me break it down for you.
where and how do i begin explaining high dose chemotherapy with (tandem) stem cell transplants? i have been considering how i should go about describing the process, however i wasn’t even sure i understood it correctly. in my case, and this might be the same for other patients, i am not sure, but upon admittance the clock starts at “day -5” (day negative 5). so, “day 0” is when i get my stem cells back. days -5 — 0 are, as you might have guessed, chemo days.
on thursday, june 15 i underwent the last pre-transplant tests (aka transplant work-up). it was a very long day of running from one appointment to another, and anyone who knows mass general knows the distance one can cover going from one part of the campus to another. a large part of this exhaustion, though certainly physical, was also emotional
I was nearly two years out from my cancer diagnosis in late-2012, and thought I had been doing great after cancer. My diagnosis of Stage IIB non-seminoma testicular cancer at the beginning of 2011 at the age of 33 came as a shock to everyone in my family, but I powered my way through EPx4 chemotherapy and an RPLND surgery at Sloan-Kettering in New York City, and was back to life, back to reality, had started a new job immediately afterwards, and it had all almost seemed too easy. The reality was that I still had no idea what I had even been through, and unbeknownst to me, I had simply shut off my emotions for the preceding two years in order to get through all that I had, while keeping a brave face on for my family.
Hi guys! My name is Jason Greenspan and I'll be a five-year Testicular Cancer survivor in November 2017. In May 2012, I was a very healthy 18-year-old and in my senior year of high school. I already applied to colleges and was excited to attend my senior prom. A week before my prom, I was watching television and had a simple itch. That itch ended up being the most important itch of my entire life. I noticed something hard; something I hadn’t noticed before. I went to the doctors a few days later and he said the words I never thought I would hear; “YOU HAVE CANCER.” When the doctor said those words, my world stopped. The only thing I could think of is what my future would be like. I was diagnosed with Stage IIA Testicular Cancer.
not the best quality images, but this shows the rapid increase of white blood cells that occurs post nadir (lowest point that an individual’s blood cell count reaches after chemo) coupled with growth factor injections. it is also clear, looking at the counts, why i was suffering from a neutropenic fever and spent a few days in the hospital hooked up tp IV antibiotics and fluids.
It has been a year since my first blog for TCAF, and I finally feel ready to openly talk about why it took so long to write this. This time last year was extremely hard for me. Four months out from Nate’s RPLND, life had slowly begun returning back to normal and the realities of what that meant were hitting hard. Not only were we recovering from everything we had been through during our cancer journey, but we were suddenly facing a new challenge... infertility.
Hello! I’m Chris Osborn a two-time late stage testicular cancer survivor, I’ve been through 4xEP, 1xBEP, 1xVIP, and 2xHDC with stem cell transplant, and RPLND. I am also a type 1 diabetic. I joined TCAF Ambassadors to help others going through testicular cancer, I have some unique medical conditions and I hope I can pass the knowledge I have acquired over the past few years to anyone who needs it! Here is a brief history of my experience with testicular cancer.
After being in the hospital for 5 days, my oncologist was worried that if i didn’t make it Thursday to collect and thus left only Friday, we were taking a massive gamble as most people need at least two days to collect all the stem cells they will need for a transplant. if i were to wait until Friday and NOT gather all the cells, we’d have to finish up on Monday and just hope the injections were still assisting in generating the needed stem cells. it’s not only the shots that are assisting in this generation of cells! the whole reason for undergoing the monstrous round of chemo/etoposide was to send the body (after nadir) into white blood cell count overdrive! add daily shots to the mix to assist this and boom – massive (daily, maybe hourly?) jumps in cell counts.
after spending the better part of the day yesterday (saturday) confined to my bed and lacking all energy, i decided to take my temperature, again. i had taken it earlier in the day and it was slightly below normal (97.9F). however, in the later afternoon, when i could barely gather myself to make tea, i thought it best to take it again. it was 100.8F and rising. normally, i would pop some tylenol and call it a night. however, considering the monstrous round of chemo undergone barely a week ago, i thought it best to head over to the ER.
A year ago today. :( Never in a million years when I joined the Testicular Cancer Awareness Foundation back in 2014 as a blogger at first, did I ever think that this young man Jordan Jones, the son of TCAF's founder, Kim Jones, would eventually lose his life like this to a late recurrence of the disease after so long. It's just something that's been burned into me now, how precious life really is, and how uncertain everything is. Never waste a day or a moment, and make each one count for something. We're only here for a very short time.
Six years after my cancer fight, I still GRIEVE the loss of my life as I once knew it sometimes, thinking that everything would always be okay, that my family would always be healthy, and friends that I truly love and care about will always be around. I want to believe that, but know it's just now how things work. Why do I get so sappy and emotional? Because I love you, and I want you to know that now, today, because I know that you might not be around tomorrow, or maybe I'm the one that might not be around.
In November of 2016, myself and a representative with the Emerald Coast Beard and Mustache Alliance (ECBMA) put on a few events to raise money for TCAF, and the "Go Nuts for No Shave November" campaign.
Hi, I am Carl Russell. I am 48 years old and a lifelong resident of the Great State of Texas. I am a son, brother, spouse and father to my family. I am a military veteran with 8 years active duty in the U.S. Army, of which 9 months was spent in Southwest Asia to support Operation Desert Shield, Storm and Provide Comfort. I have lived a great life, but nothing prepared me for the day I was diagnosed with Testicular Cancer.
One of the most popular books for pregnant women is What to Expect When You’re Expecting. This book details the physical, mental, and emotional changes they’ll undergo as they travel through their journey and get that happy news - it’s a healthy boy/girl.
As I began chemo in November 2016, I realized a male-centric version, entitled What to Expect When You’re Expecting Chemo (Because Your Testicle Decided to Go Rogue and Try to Kill You) would have been a helpful title in my library. Unfortunately, this volume has yet to be written (which I’m going to chalk up to the obnoxiously long title). It looks like it’s up to me. I’ll be penning the first draft here, based on my experience of three rounds of BEP chemo.
It was in the fall of 2012 that my life that cancer would turn my life upside down. At the age of 29, with two kids just five and three at the time, I would come face to face with my mortality, fight for my life, and watch the world around me evolve at a time when my life was at a standstill. 5 years later, I am a college graduate, and on to another new journey in life.
"Hey guys! My name is Josh Cooper, I am a stage 2a Pure Seminoma Testicular cancer survivor. I was diagnosed in October of 2012, originally stage 1b. At the time, I was a healthy and happy 24 year old, and thought nothing could go wrong. One day, I noticed my left testicle just felt off. It felt hard, but I didn't find a lump. As the days went on, I searched webmd, and started to worry. With no health insurance, I went to my local urgent care. They originally thought it was an infection, but a few weeks later we did an ultrasound. That day, I got the call the changed my life. I remember sitting in my car, my world crashing around me, when I heard the words "Mr. Cooper, there is a very good chance that you have testicular cancer."
It all started sometime in early 2005, I noticed my right testicle seemed slightly bigger. Of course at 24 I had no clue what that meant and just brushed it off. I kept on going, living my life. Around April, my appetite fell off and by the second week of May not only had I really become worried about the size of my testicle, but it really started to hurt. Even then I had not made an appointment to have it checked, but I did go to my family doctor to check into some issues I was having with swallowing food (which later turned out to also be a side effect of the spreading cancer). Luckily, during an abdominal ultrasound, they saw the spots that would alter my life forever. They immediately rushed me to CT scan and within 24 hours I received a call from my doctor that he was referring me to an oncologist.
on 5/27/17 i went inpatient for my etoposide infusion. as mentioned this is done just prior to daily injections (which i start today) of stem cell growth factors. the idea in such an intense chemo dosage (explained below) is to really try to beat down the “bad” stem cells before forcing the generation of new, healthy ones. these newer stem cells are then collected and then the aforementioned process takes place again but with even more intense chemo over longer periods of time. so, rather than just “beating” them down, they’re being annihilated completely.
i am endlessly impressed by the body’s ability to heal and recover. the trick to recovery is patience and acceptance of what is, where one is at etc. the body knows what it needs to heal, as does the heart and mind.
Nothing matters more to all of us at the Testicular Cancer Awareness Foundation than getting out into the public, and helping to raise awareness about testicular cancer. It's the number one form of cancer in men ages 15-44, yet almost no one talks about the disease! The rate of testicular cancer in young men is nearly the same as the rate of breast cancer in young women, yet all you ever see are pink ribbons and breast cancer awareness campaigns. There's nothing wrong with that, but we need to be talking about men's cancers and testicular cancer, too! We need to see more BLUE out there, and so it was great to see so much awareness activity this past week by TCAF Ambassadors in both schools and at health fairs.
When I was finishing chemo, I was given Ambien to help me sleep. It didn't work, but the side effects of 'violent and suicidal thoughts' sure did.I don't think I've ever really talked about this publicly, but reading about Chris Cornell's death and what his wife is saying about his taking Ativan, which is some powerful stuff made me see the connection.
things change… it is hard to believe it was over a week ago today i was rushed to the ER (april 27, 2017). i understand clearly what was happening. at the time however, i was in tears to the paramedics while en route trying to explain my health history in one long-winded sentence, as well as both describe to them (and explain to myself) that currently i couldn’t move my left arm.
TCAF Ambassador John Armijo shares his perspective of getting his life back after testicular cancer through his movie work, and on recovering from the extreme fatigue, neuropathy, and PTSD that followed chemotherapy. "In my quickly-going-insane mind, I had already died and was in Hell. I couldn't leave the house due to low immunities and had lost everything in my mind, from the ability to sleep and eat, and now my sanity was next on the checklist before I ultimately lost my life. A bit exaggerated in retrospect, but very real to me at the time."
Today marks my last two days of chemotherapy for testicular cancer, six years ago. Why do I mark the last two days, and not the last day? Because I distinctly remember just how scared out of my mind I was, worrying that the chemotherapy hadn't done its job, and that I'd have to go through these months of misery all over again, possibly without a healthy exit.
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