To the outside world, it might not be apparent that my family is experiencing one of those dreadful life-altering experiences that you hope never strikes your family - a cancer diagnosis. In our very real lives; however, things have quickly flipped upside down for us over the last three weeks. My husband, Rob, has been diagnosed with a rare and aggressive type of systemic testicular cancer that often metastasizes in multiple organs including the liver, lungs, and brain. While less than 10,000 men in the United States are diagnosed with testicular cancer every year, an even lower number have tumors composed of this variant called choriocarcinoma. This cancer most often occurs within men between ages 20-30... yes, in what is supposed to be the prime years of a man's life. In a seemingly cruel twist, it also has some additional complications when treated. Rarely, chemotherapy can trigger a response called Choriocarcinoma Syndrome which is a hemorrhaging of the metastatic lesions. The syndrome can sometimes be fatal when those lesions begin to bleed in the brain or lungs. The obvious response is to stop the chemotherapy, but wait, if you stop chemo then the cancer continues to grow. Sadly, a small percentage of these individuals pass away when they are forced to stop treatment because the metastatic disease reaches more organ systems or grows larger in already affected areas. Edit to clarify perspective: Up to approximately 80% respond with desired outcome and experience remission. Achievement of remission and duration of remission vary between individual cases, the location of lesions within the brain and the number of metastases are variables physicians consider when factoring a prognosis. Chemotherapy and targeted stereotactic radiosurgery/radiation treatment are the prime treatment modalities prescribed for choriocarcinoma. The outlook or prognosis is much better for individuals when the cancer is detected early because it is so aggressive and metastasizes rapidly. The response to treatment is more difficult to predict when the disease is already in an advanced stage once detected. This brings me to the most crucial point of this photo documentary series - perform regular checks. Yes, men need to perform regular checks for lumps just as women check for breast cancer. Why? Some of the earliest symptoms can present as tenderness in the breast tissue or even a noticeable lump. hCG levels, the same present during a pregnancy, often rise when a man develops a choriocarcinoma or other nonseminoma mass in a testicle. Also, skip the doctor's appointment wait and head to the ER if you notice a growth, hardness, or unusual pain in a testicle. Time is critical in successful treatment of choriocarcinoma. Waiting for test results is too long, but that process can't ethically be skipped so make sure you're performing regular checks and reporting unusual changes or symptoms to a doctor immediately. In our story, my husband noticed a tenderness in breast tissue six to seven months ago. I asked him to go to the doctor for an exam, but he downplayed his concern and told me it went away. Looking back, I knew better because I know lumps in the breast can obviously indicate cancer. Unfortunately, I was fooled by the disappearance of the lump (yes, I checked for it). The lump was not a tumor so it went away and I thought, "tumors typically grow larger rapidly... so that's good it wasn't one!" Oh, how I wish I could time travel. The lump was an early symptom and we missed the opportunity to intervene months sooner.
Catching us up to the present - just before New Year's Eve, my husband began complaining of pain and pressure in one of his testicles. I knew then that it was serious. Multiple symptoms were present and a group of three or more becomes a pattern. I had been telling my husband for weeks to go to the ER because he had been moody and reporting multiple ailments. Now I knew it was all related - the mood swings/emotional dysregulation, unexplained fever and night sweats, headaches, and not finishing meals or eating once per day. I had to tell my husband to go to the ER or our marriage couldn't work because I couldn't live without knowing what was truly happening - he was that stubborn. I can say with sincerity that I wish I had been overreacting all those weeks, that the results were normal. I can remember each state of shock and episode of derealization I experienced when reading his lab and test results and worry that set in later. I wanted it so badly to be that I had just been an erratic, over-reactor and for everything to turn out as some benign and easily treatable condition, but that's not our story. Instead, choriocarcinoma with intracranial lesions means an intensive in-patient round of chemotherapy before starting radiation. At some point we know he'll need a surgery to remove a tumor from his lung and another to address other symptoms. We are taking every treatment day by day and we are still hopeful of a positive response to this round of chemo, but it's still a lot for the body to experience all these changes so quickly. The goal is to minimize the brain lesions, hopefully so they'll go into remission. I wasn't allowed to accompany my husband to appointments due to visitor restrictions during this global pandemic, he was diagnosed with cancer alone. I couldn't support him in his room prior to surgical removal of the main tumor, I couldn't attend his oncology meeting, and I almost wasn't allowed to visit him during this week-long intensive chemotherapy treatment he began just two days ago. By the news of the metastatic lesions in his brain, though, I was done with not being available to support my husband. I clearly described his long-time mental health struggles with PTSD and explained my experience as a trauma-informed disability advocate. I let them know they might regret not having me there to help him process and cope with the last-minute hospital admission for his first round of chemo. By grace and understanding, the medical doctor granted an exception to be present as his mental health support person. I began to think about what I could do to help myself process this difficult change in our lives, and I knew it would need to be something that could get the thoughts out from my mind. I spoke to Rob about documenting our experience to tell our story and he immediately supported the idea. Firstly, I need to express myself to get through this ordeal and creativity is the only healthy coping mechanism I've been able to focus on. Secondly, I want to raise awareness of this type of cancer because it strikes quickly and aggressively. Rob inspired the idea as he kept telling me to let others know to get check-ups regularly. Thus, I am capturing our story in photos each day and then writing personal essays about our experiences. The topics I discuss are not intended to replace medical advice, they are just facts I find important enough to share or descriptions of events we experience. Please do perform your routine self-checks and see a doctor immediately when you suspect anything unusual, please don't wait or downplay a problem. You can view the first collection of photos below. January 22, 2021 Natasha Maxwell Family Website