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.
Our journey began in December 2013, when my then 29-year-old husband experienced some dull testicular pain that persisted for about a week before he saw a urologist. The doctor diagnosed him with epididymitis and prescribed a course of antibiotics and painkillers, adding in an ultrasound “just in case.” Forty-eight hours later, Nate received the call that would change our lives forever. He had testicular cancer. I remember immediately sinking into a place of overwhelming darkness, my mind filled with worst case scenarios of losing my love and partner in life. At that point, I had been a wife for a little over a year and we were just starting to plan our future together. We had recently bought our first home and had started talking about our timeline to try for a baby. And then in an instant, cancer completely halted our lives and filled them with fear, sadness, and uncertainty.
After bloodwork that showed only slightly elevated tumor markers and a clean CT, Nate had an orchiectomy two days before Christmas that confirmed his diagnosis. He spent the holidays recovering at home and was soon back to his old self, though neither of us could shake the feeling that our brush with cancer was far from over. As we began consulting with oncologists, we found that they were all hesitant to recheck his tumor markers until 6 weeks had passed after surgery. Supported by encouraging statistics, they were all exceptionally confident that surgery alone had cured him. However, our uneasy feeling lingered and prompted me to pick up a pregnancy test at the local drugstore.
Sounds crazy, right? What does a pregnancy test have to do with any of this?
Some testicular cancers can secrete human chorionic gonadotropin, or HCG, commonly referred to as the “pregnancy hormone.” This is by no means a fail-safe or precise method of testing for testicular cancer as it cannot rule out its presence or absence (as outlined by our good friend, Steve Pake, here); however, we knew that Nate’s HCG was so mildly elevated prior to surgery that weeks later it would likely be below the limit of detection if he was indeed cured.
One of the most poignant memories I have is being in the drug store trying to decide which pregnancy test I should buy. I felt eyes on me and my face flush as I noticed the strangers around me staring, probably assuming I was buying the test for myself or maybe seeing the tears I was struggling to keep from falling. Who would have thought that I would be buying a pregnancy test for my husband and not for myself as a happily married, 28-year-old woman? On the outside, the only thing missing from our lives was a baby! It was so heartbreaking and all I could think was “how is this our life right now?!”
Long story short, Nate took the test and it was positive. This convinced an oncologist to draw serum tumor markers that ended up being elevated and solidifying his diagnosis of stage 1S nonseminoma. Nate went on to complete three cycles of BEP chemo two years ago today. We had a beautiful eight months that followed, until his regular CT scan revealed a tumor in his abdomen that would require a retroperitoneal lymph node dissection.
We were so lucky to be able to go to Memorial Sloan Kettering in NYC for his operation, where one of the best urologic surgeons in the world, Dr. Joel Sheinfeld, successfully removed 92 retroperitoneal lymph nodes exactly one year to the day of Nate’s first surgery, again two days before Christmas. Thankfully, the tumor was a teratoma, so after a week in the hospital we were able to return home and spend the coming months recovering and trying to make life as close to normal as it can be after everything we have been through. It has been a struggle at times, especially emotionally, but we are choosing to truly live every moment and cherish the time we have together, which seems all the more precious after facing the reality that it might be much shorter than we could have ever imagined.
Contrary to what people might think, a cancer diagnosis isn’t just about the patient. While everyone’s experience is different, cancer forever changes the life of the people closest to the patient, most notably that of their caregivers. The mothers, fathers, wives, and partners of patients with testicular cancer often suffer in silence, the lasting effects of which can extend far past the end of treatment. Testicular cancer is unique in that it typically affects young men between the ages of 15 and 35, when most people typically feel untouchable and carefree. That false reality has been difficult to come to terms with as a young couple with our whole lives ahead of us, but we have also gained so much from our experience and become stronger people because of it. Cancer has given us the most amazing perspective on life and for that I am so grateful.
One of the most powerful gifts I have been given from this experience is a connection to many people just like us who truly understand the challenges we face as young cancer survivors and co-survivors. My hope is that by openly sharing our experiences and lessons learned from a caregiver’s perspective, I can reach out to the family members and partners trying to navigate this crazy ride alongside their loved ones. I want to provide a source of knowledge, support, and understanding for what you, too, are going through. You are not alone even though it may feel like it, especially when the world is moving forward and your life is standing still.
We have dealt with so many ups and downs following Nate’s diagnosis, many of which only people in similar situations seem to truly sympathize with. The fear, sadness, and isolation that often accompany our cancer experience continues to be a challenge as we navigate survivorship together. Our painful struggle with infertility, dealing with changing relationships, being an effective health advocate, cancer-related anxiety/posttraumatic stress, as well as all of the amazing ways cancer has changed our lives for the better are a few of the topics I plan to touch on in the coming months. It can be scary to open up in such a public way, but I know that by doing so we can begin to remove some of the stigma often felt by patients and their caregivers.
As caregivers, we are often thrust into multifaceted roles that can range from basic housekeeper and primary responsible party, to healthcare advocate and puke bucket fetcher. While in the throes of caring for your loved one, it is easy to put your own health and well-being on the back burner until everything is “okay” again. The long-term emotional, psychological, and sometimes even physical effects of cancer for both patients and caregivers are not something you have to struggle with alone. I look forward to growing and fighting alongside each and every one of you as this new chapter of life after cancer continues to unfold.
Happy Testicular Cancer Awareness Month!
Alexia Karanikas is a 30-year-old daughter, sister, and happily-married wife residing in the DC metro area with her husband and two year testicular cancer survivor, Nathan Ballantine. Alexia is a scientist with a PhD in microbiology/immunology that currently works in military health and science consulting for a large firm. Nate is a business analyst and IT project manager for a retail company. Both from Michigan and 10 year college sweethearts, Nate and Alexia enjoy photography, traveling, and weekly frozen yogurt dates. They are involved in the local cancer community, working to raise money and awareness while also providing support for other individuals in similar situations. Alexia has been a volunteer caregiver mentor with Imerman Angels since January 2015 and has blogged about their experience with cancer and survivorship on their website, Le Petit Crabe.