As much as I and so many of us have all struggled during our cancer survivorship years, I've wondered from time to time how the guys in decades past managed this, prior to the connected world that we live in and benefit from today. We really do have the world at our fingertips these days, and there are so many wonderful sources of information and support that are just a click away, and people that I've met and bonded with via the Internet that I couldn't imagine having made it through my survivorship journey without. So how on Earth did the guys manage this decades ago in the relative "dark ages", before the Internet and the 24/7 connected world of the 21st century? That perspective came to me the other week in a response to my blog, "Cancer Survivorship - The Fight after the Fight and All of its Firsts". Introducing, Chris Horacek.
Chris Horacek is a 32 year survivor of testicular cancer, and is among the first generation of people out there to have survived advanced stage disease. Chris was diagnosed with mixed pathology Stage 4 (3c) testicular cancer in 1983, and despite this having occurred 30 years in the past, his story is one that will sound very familiar even today. At 24 years old, Chris and his wife of 3 years at the time, Cheryl, were both young, they had no money, and also had no health insurance! Chris had been in graduate school at Oklahoma State, and had noticed a nodule on his left testicle. He was tired all the time, and was experiencing severe weight loss of as much as 5 pounds per week. It was only when he went home for a high school graduation that he happened to hear about testicular cancer and its symptoms, because someone from the town had just died of it. Several people and doctors passed it off, but Chris knew he had it. He returned to school quickly, and talked to advisers about what was going on. He enrolled in a doctorate of education program so that he could get health insurance, and picked up a $10,000 student loan all within a few hours, and was in surgery later that afternoon.
Chris evaluated the options at both Indiana University and MD Anderson, and decided to head to Texas for treatment. He went through 3 rounds of PVB (Cisplatin, Vinblastine, and Bleomycin), and then two additional rounds of Ariamycin and Cytoxin which aren't commonly used for testicular cancer these days. It was later in the 1980's that Vinblastine in the PVB protocol was replaced with Etoposide due to lower toxicity, to form the BEP protocol that many of us have been through today. Chris was fortunate and very lucky to survive, but his tale of survivorship that he shared after reading the blog stopped me dead in my tracks, and is a must read.
Chris' post as follows:
Reading this post gave me goosebumps as I have not thought about the first few post chemo years.
Those first three years were mentally grueling, probably tougher than the actual nine months of treatment, which is hard to believe.
Back in the late 70's / early 80's we were the first survivors of advanced testicular cancer. Successful treatment was associated with a long in patient stay in a cancer ward where people lived and died on a regular basis and successful outcomes were not assured.
When release back into the world there was no counseling and it was assumed that us survivors were so happy to be alive that we would just naturally recover on the mental and spiritual side.
The cold reality after a few months was a life uncertainty on many levels, mental isolation, physical stress and debts that could probably never be repaid.
Within the first three years most of the guys I went through treatment with went through extreme depression, many taking their own lives, which to most people would be unthinkable after given a second chance.
Three years after chemo when I went in for a check up one of my best friends was back in the cancer ward with a relapse. His dad asked me to go see him, I did, he was terminal and died 20 minutes after my visit. Afterwards I flew back home and got into a bad place. Thank God for a great wife and friends who pulled me through. Ended up starting one of the first testicular cancer awareness programs in the country.
32 years later have had a great life, raised a family and am one of the longest survivors of Stage 4 TC. (Ten years ago I was one of 4 out of the 25 in my treatment group that were still vertical).
Am very Thankful for the life I have had and try to help others fighting this disease.
After all of these years I am still somewhat mystified by the lack of awareness of TC in the general population. Just last week I was having dinner with one of my younger colleagues. He is sporting a shaggy beard, which I associated with No Shave November. When I asked him about his beard he confirmed he was participating in No Shave November as a means to promote breast cancer awareness. When I asked him about TC he said yes No Shave is for all cancer awareness.
Did not let him know, but felt a it sad as after all these years our society still has a hard time talking about testicular cancer. At one time I thought No Shave November was all about testicular cancer, I guess not anymore.
Everyday young men and boys are being diagnosed with a disease they don't even know exists, which is a shame because we don't like to talk about the male anatomy.
What a terrible tragedy it was for these earliest survivors of advanced stage testicular cancer to be among the first to beat it in the later stages and have that second chance at life, only for far too many of them to fall to the extreme mental health challenges during survivorship later. It just wasn't understood back then that people, including men, would even need support at all. That's how powerful and traumatizing the aftermath of cancer can be, and what such extreme stress and anxiety and the resulting depression can cause. Whether it's clinical or situationally induced, depression is a disease all by itself. It was a deep depression that claimed the life of beloved actor Robin Williams earlier in 2014.
On one hand it was shocking to hear Chris' story and the fate of some of his peers, but on the other hand I also found it completely believable. My cancer survivorship journey has taken me to some terribly dark places. I'm not ready to say that I've contemplated suicide, but I know a testicular cancer survivor who has, and I've been at the end of my rope myself. I might have contemplated suicide for the briefest fraction of a second at one point, but knew how badly my wife and my family loved and needed me, and that I had to find a way to keep moving forward. It's scary for me to think about where I might have been or what might have happened, had I not had the benefit of so much wonderful support both in and out of the cancer community, and all of the connectedness that we enjoy today. Just knowing that I wasn't alone, and that many felt the same as me helped. Guys back then didn't even have the benefit of that, and then dealt with mental isolation on top of everything else. Cancer will continue to affect you even long after its left your body. It's merciless and won't just push you to the limit of your sanity and ability to cope, and then kindly stop. It will gleefully fling you right off the edge, and you need strong people, the very best people for you, to be a presence in your life to help support you when you fall. It requires support.
Like Chris and many other cancer survivors that I've talked to, so many of us end up feeling the same way. The challenges that we face in life after cancer can easily outweigh the challenges of the physical fight against cancer itself. It is unthinkable. What on Earth could possibly be worse or more challenging than the pure hell we'd just been through fighting cancer for months on end? But I can tell you with a straight face sitting here today, it was harder. So much harder. The extreme stress and anxiety of so much uncertainty is real. The emotional roller coaster of each surveillance appointment and scan is real. The potential hormonal issues, and having our lives turned completely upside down is real. And the perpetual fear of not knowing if there's something still inside of us that's going to try to start killing us again or not is real too, along with the terror of just being afraid of living in our own skin, and the feeling of being trapped in our own bodies with no escape.
We've certainly come a long ways in the past 30 years as far as awareness about testicular cancer. Many people have at least heard of it, and the medical profession is aware of the challenges of survivorship, but there's still practically zero awareness in the general public about the challenges and need for support long after cancer. So much progress has been made, but there's still a long ways to go both on spreading awareness about the disease itself, and the challenges of survivorship. According to TCAF Founder and CEO Kim Jones, social media and especially Facebook has been the greatest single tool in these modern times for getting the word out and helping to spread awareness, and for helping people to find support. A lot of progress has been made even in the past 5 years, and as Kim puts it we're making strides one day, one month, and one year at a time.
Thank you, Chris, for your willingness to share your survivorship story with the TCAF community, and congratulations on being a 32 year survivor of stage 4 testicular cancer! To be able to catch this historical glimpse of what cancer survivorship was like at a time when there was no awareness and no support at all, reinforces just how vital and important our mission is here today, and how much work we've still yet to do. Best wishes to you my friend, and especially to your wife Cheryl on her breast cancer survivorship journey. Here's to many more and continued all clears to you both! Thank you!