It’s coming this Fall 2017! Mark your calendars for October 13-15th in Denver, Colorado for a first of its kind Testicular Cancer Summit, featuring Dr. Lawrence Einhorn as an honorary guest speaker! If you’ve been wondering what’s going on and what this is all about, here are the Top 5 things you need to know about the Testicular Cancer Summit in Denver this October.
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.
Country Jam 2017 is a wrap, and TCAF was there. Country Jam is an annual 4 day country music festival near Grand Junction, CO, which this year featured Kenny Chesney, Jason Aldean, Thomas Rhett, Justin Moore, Randy Houser, and so many other great artists! We'll let the pictures do the talking! Thanks to all of the wonderful TCAF volunteers and friends that came out, and for helping to make this event a success!
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.
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.
It was a beautiful and emotional day for the Jordan Jones Memorial Golf Tournament back on May 20th, 2017, at the at Adobe Creek National Golf Course. It was the 7th annual golf tournament benefiting the Testicular Cancer Awareness Foundation.
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.
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.
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.
April is testicular cancer awareness month, and as a six year survivor of this disease, I can tell you a few things about testicular cancer. The first is that contrary to what people might expect, testicular cancer is actually the #1 form of cancer in men ages 15-44 internationally, yet almost no one talks about the disease. It’s sad and frustrating that 20 years after the founding of a very famous organization in yellow by a now very infamous testicular cancer survivor, that we still have to struggle so hard for any sort of public awareness about this disease. In the U.S. alone, someone is diagnosed with testicular cancer every hour, and someone dies of this disease every day.
As an American, I tend to not pay too much attention to what members of the British Royal family are up to, but I just became a huge fan of Prince Harry. It turns out that he and I both have something in common, and that is two years of total chaos after traumatic events in our lives. For Prince Harry, it was the tragic loss of his mother, Princess Diana, 20 years ago when he was just 12 years old, and for myself, my cancer diagnosis six years ago at the age of 33.
Bringing Survivors and Experts Together for a Weekend of Awareness, Education and Support.
Mark your calendars. October 13, 14 & 15, 2017 at the University of Colorado Anschutz Medical Center will host the first Testicular Cancer Summit. During this weekend long event we will discuss life with cancer and the many lifestyle changes that can help the healing process. Motivational speakers, keynotes on lifestyle, and support systems will all be part of this summit. We hope to see you there.
In my years after cancer, I experienced several recurrence scares that were so bad and so real, that I thought for certain that my cancer had returned, that I had just lived my last good day, and that I was going to die. This is what's going through our minds when there's a cancer recurrence, real or imagined, captured with the help of breast cancer thriver, Nalie Agustin
An essay looking back on six years of young adult cancer survivorship, and how I finally managed to find peace after testicular cancer. If cancer were to take me now, this is how I would feel, and all that I've done to finally get there.
As I approach six years of cancer survivorship, never has it been more clear to me that cancer is not just a disease of our physical bodies, but a disease of our minds and souls as well. Thus, the argument that many make, is that cancer is not just a matter of eradicating the rogue cells from one's body, but of curing the entire patient.
The National Comprehensive Cancer Network (NCCN) Guidelines for are the bible by which Testicular Cancer patients are treated and managed. The follow-up care recommendations within these guidelines only goes out to 5 years, and even within those 5 years, there's been some significant adjustments to the recommendations over time. It's entirely possible that if you were diagnosed with testicular cancer within the past few years, that you might be able to make some adjustments to your follow-up schedules in favor of fewer scans or appointments, but what do you do after that? It's up to you and can go on a case-by-case basis. Here are some answers.
Experiencing fear on a regular basis comes with the territory of being a cancer survivor. It's a very normal and even healthy part of cancer survivorship, but something that needs to be managed, so here are six tips on how to help cope with and overcome it.
From that of complete darkness and feeling so hopeless, to then progressing so slowly with the smallest rays of hope, life after cancer has blossomed over the years into something truly beautiful and breathtaking.
Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.
Life goes on, and the sun will rise and set again for many of us after cancer, but not for all. Survivor's guilt is a very normal part of the cancer survivorship experience. It can be tremendously painful, but is also a huge opportunity for growth in our lives.
As I look back on 5 years of cancer survivorship, I've started to see from a higher level just how much I've evolved every year since cancer. We evolve constantly throughout our lives, perhaps too slowly to notice on a year-to-year basis, but we're always evolving. Having cancer as a young adult is a massive accelerator for that evolution.
By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. After months of being poisoned almost to death by harsh chemotherapy drugs, irradiated trying to nuke cancer cells out of existence, or having our bodies ripped apart and then sewn back together, our bodies are just plain tired.
The thorn in the side of every single cancer survivor out there, is that we never really know if our cancers have truly been cured or not. The best status we ever get from our doctors is "NED", no evidence of disease, but this doesn't mean that no disease is present, it simply means that none can be detected. The passage of time without any new evidence of disease is the only way that we ever get to "cured", and that makes for a very challenging waiting game in our years after cancer. Nothing has been more terrifying to me during these years than the fears of recurrence, and every strange pain or irregularity in our bodies brings these fears to life.
Today is a very special day. Not only does today mark the start of Testicular Cancer Awareness Month, but my husband, Nate, and I are also celebrating a huge milestone. He is officially two years cancer free! Considering that the majority of relapses occur in the first two years, this is a moment we have cautiously awaited for the last 731 days. I feel so grateful to TCAF founder, Kim Jones, for the opportunity to write my first blog in support of all past and present testicular cancer patients and caregivers during such a monumental moment in our lives.
I wrote my reflections on reaching 5 years since my cancer diagnosis in advance on my personal blog, "Five Years Ago Today...", so that I'd have something to share on that day, but until that day came, there was no way to know exactly how I'd feel about it. I was shocked at how I felt when I woke up that morning as a newly minted 5 year survivor of cancer, because honestly, it felt like I had just woken up from a terrible dream, and it was wonderful.
Cold weather never bothered me before cancer. My body would just naturally adjust on its own, and all was well. After cancer has been an entirely different story, and as the temperatures drop below 40F, my body just wants to grind to a halt on me.
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