“Cancer Changes Everything…”by: Alex Hohmann

Alex Hohmann - 'Survivor'

When I asked Alex to share his ‘voice’ in the ‘Written Word’, I knew it was going to be quite powerful. Alex was the 25th ‘Survivor’ to also share his ‘voice’ on camera in the ‘Video’ section.

“Cancer Changes Everything…”

…but it doesn’t have to change everything for the worse

TC: Round One

In 1996, at the age of thirty, I was diagnosed with testicular cancer. My right testicle had been getting larger over a period of months but, too embarrassed to see a doctor, I had ignored it. I read what little I could find on the Internet at that time before seeing a urologist. He took him no time to pronounce the word “cancer” and thus began my first cancer journey. An ultrasound, blood tests, and surgery — a procedure known as a radical inguinal orchiectomy — followed in quick succession. I was told I was lucky that my cancer was of a stage and cell type affording statistically high cure rates. The most common approach at that time my particular type of case high-dose radiation to minimize the risk of relapse. I chose the most extensive field of treatment possible in order to put this experience behind me as quickly as possible and to move on with my life. With the end of surveillance after five years, the memories of the experience retreated as quickly as the surgical scar itself faded.

In one way, however, my first diagnosis did change how I lived my life. Until then, I had struggled with my reluctant realization that I’m gay, doing what I could to conform to my family’s expectations of me. I even went so far as to bank sperm before starting radiation treatment, in the hope I might some day get married to a woman and have children. However, after the completion of my treatment, I wasted little time breaking down the door of the closet I had been too comfortable living in. I finally realized something that I’ve lived by ever since: Life is too short and too uncertain to spend living a lie for the sake of other people.

On the other hand, testicular cancer left me feeling deformed and lacking any confidence where dating was concerned. So there I was, newly out but feeling like something of a freak. I went through the motions of dating but lived a particularly chaste life for over a year after my treatment until I met a man. That man —  intelligent, understanding, attractive, and with an optimistic view of life — helped me to accept my body for what it was. He has been my partner in life ever since.

TC: Round Two

Turning forty unsettles some people for a variety of reasons. In my case, it energized me to exercise, eat better, and enter my fifth decade feeling better than ever. However, by late 2007, I was struggling to concentrate at work, my libido was suffering, and my workouts were just not very productive. I had my testosterone checked and was diagnosed as having particularly low levels. Thinking I was too young for such a diagnosis, I sought out a urologist for the first time since my first round of testicular cancer. He asked to examine my remaining testicle, at which point he paused and asked “Have you noticed this bump on your testicle?” The examination room suddenly seemed very quiet.

The doctor asked that I have an ultrasound done at a lab. I couldn’t believe it could be happening again so, irrationally, I put it off. By the time I finally did have the ultrasound done, two months after seeing the doctor, my surviving testicle had grown noticeably larger. I returned to his office, was told the bad news and the all-too-familiar whirlwind of getting set up for blood tests and CT scan, with an MRI thrown in just to be sure (this being my only testicle, after all), and scheduling of surgery ensued. The doctor offered to implant prostheses to replace both testicles and I jumped at the chance, thinking I’d finally feel complete again. But that feeling of elation lasted only a few seconds when I realized what lay before me: surgery, recovery, being on testosterone replacement therapy for the rest of my life, being rendered sterile, and the risk of relapse. I couldn’t feel my legs as I left the doctor’s office. I was in shock. This just couldn’t be happening again.

Surgery and recovery were all too familiar. I felt as I did twelve years before, only this time it wasn’t a fading memory, it was reality. While recovering, I began the hunt for a medical oncologist with experience in testicular cancer, knowing that my prior radiation therapy (and its consequent risks) and the fact that TC is so rare complicated matters. I was fortunate to have access to a leading cancer center of excellence in New York. I was on my way to getting excellent care and regaining some peace of mind, knowing that my prognosis was excellent.

It has not peace of mind without some bouts of anxiety, however. I learned on my first oncologist visit that my best option and the only one he would support was to embark on a long-term surveillance protocol. My cell type being what it is, that means I’ll be going back for very frequent scans, blood tests, and physical examinations for twenty years after this second diagnosis. I face a gradually diminishing risk of relapse, the risk of developing radiation-related secondary tumors (a bladder cancer scare serving as a harsh reminder of this), and a lifetime of hormone replacement therapy. My oncologist and endocrinologist visits will be a part of my life for a very long time to come. I recognize now that cancer is with me one way or another for the rest of my life whether I like it or not. Cancer isn’t simply a disease. It’s a way of life.

Survival

In the year since my second TC diagnosis, I’ve learned a lot about cancer, about the need for improvement in access to healthcare, and the pressing need for more funds to fuel more research. I’ve learned a great deal about other cancers and the terrible battles other people have faced. Most of all, I’ve learned the meaning of the word compassion.

I can dwell, and sometimes do, on the things cancer has taken from me. But I can’t help getting irritated with people who ask me too often how I’m doing or who tell me how horrible my experience must have been or how they couldn’t even imagine facing this. I think I have little patience with this because, knowing what I know now, I think of myself as incredibly fortunate.

I’m fortunate because, faced with a disease I could not have avoided, I at least have had access to the very best health care while so many other people have none. I’m fortunate to know so many people who have devoted much of their lives to treating patients, researching new treatments, raising money to fund these activities, promoting awareness of this disease, and simply offering words of support to all those affected by cancer. I’m fortunate because, unlike too many people I’ve come to know, I have not lost a child, parent, sibling or partner to cancer. I do not have to fear for my family’s financial survival because of a lack of insurance. I am not facing the prospect of a short life. I may have faced cancer twice and it may have taken much from me, but I have no cause to complain.

Just as cancer prompted me, in 1996, to live openly and honestly for first time in my life, it now has helped me to learn to care more about others. In that sense, cancer has taught me that compassion is about feeling the pain others feel and doing something about it. I am surrounded by examples of compassion, most notably in the people I’ve come to know on the TC-Cancer online discussion forum and the healthcare workers I now see on a regular basis. All these people, many of whom I consider family in the fullest sense of the word, have inspired me give to others, speak out on issues of justice and living well, and open myself up to the joys and sorrows others experience.

I became a cancer survivor when I stopped simply being angry at cancer for my own sake and learned to channel my anger at cancer to care about others. I can choose, as I had done in 1996, to bury it somehow and to move on. Or I can choose, knowing that it will always be with me, to draw strength from this experience and to do something about it. Survivorship for me has meant choosing the latter.

This entry was posted on Wednesday, April 29th, 2009 at 12:57 pm and is filed under written word and tagged with , .