About 7 years ago, I had emergency hernia surgery and soon after began experiencing severe constipation and abdominal bloating. I had started to have minor symptoms leading up to the surgery, but now the pain and exhaustion of trying to have a bowel movement became unbearable. I met with a gastroenterologist who performed a digital anal exam and felt a mass near the anus. A follow-up colonoscopy found a tumor on my anal sphincter, and a tissue biopsy later confirmed it was human papillomavirus (HPV)-related stage II squamous cell anal carcinoma.
Even before I received the diagnosis, I had an idea I had cancer. Years earlier, I had been diagnosed with acquired immunodeficiency syndrome (AIDS), and I knew the human immunodeficiency virus (HIV) put me at higher risk for developing HPV-associated cancers, including anal cancer. Hearing the words “You have anal cancer” was so terrifying that I started to cry. Then, almost immediately, my fear began to fade.
Daniel G. Garza Photo Credit: Richard Wayne Kilgo II
Upon seeing my distress, my physician put his hand on my shoulder and said: “Look at me. We’ve got this.” He was saying that we were in this fight together, and it was all I needed to hear to get ready for the grueling treatment that lay ahead.
The goal was to get rid of the tumor and preserve the function of my rectum. Although the chemotherapy and 40 rounds of radiation therapy I was prescribed was successful in shrinking the tumor, the cancer had damaged the muscle in the sphincter. What I had been desperately trying to avoid happened. I was told that until I could have colostomy surgery to attach the end of the colon to a stoma on the abdomen wall, I would have to wear diapers.
Adjusting to a New Normal After Cancer
The prospect of being in diapers was humiliating, but I was comforted by the fact that it would be temporary. Unfortunately, I developed anal fistulas and became very ill. I was losing weight and had to be hospitalized after one of the fistulas caused a blood vessel to burst. It was then that my physician suggested I have colostomy surgery, but I was unprepared to take that drastic step. After a few months, however, I knew I couldn’t live in diapers for the rest of my life and be subjected to additional health complications and so consented to the surgery.
Now, I wear an ostomy bag that I’ve named Tommy.
As a gay Catholic Latino man, I had developed the ability to adjust to whatever curveball life through my way. I admit, however, having a permanent ostomy bag and being unable to be intimate with my partner, Christian, in the way we could before my cancer diagnosis have been challenging, and we are still adjusting to our new normal.
Supporting Each Other
I have never been ashamed of my sexual identity or of being HIV/AIDS-positive or having anal cancer. I made a deal with myself a long time ago to use my voice in service to others and to speak out against the stigma that is often attached to being gay and HIV/AIDS-positive.
“Being a survivor of both HIV/AIDS and cancer has reignited my life and made me less fearful of the future.”— Daniel G. Garza
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Since my cancer diagnosis, I’ve become a patient advocate to help other lesbian, gay, bisexual, transgender, and queer individuals living with life-threatening cancers. We in the gay community need the support of each other, especially for such stigmatizing cancers as anal cancer. For people with our disease, there are no pink ribbons, few support groups, and little money for research. We are on our own.
Thriving With Cancer
I was fortunate throughout my cancer ordeal. I had a wonderful oncology team that gave me high-quality care and supported me throughout my cancer experience. However, I wish they had referred me to a mental health therapist, who could have helped me better cope with the changes cancer and its treatment would cause to my body and in my life. Seven years later, I am still struggling with cancer’s aftermath.
On my good days, I can see the positive effects cancer has had on my life. It has made me more outgoing and less afraid to pursue my career goals as a standup comic, actor, author, entrepreneur, and patient advocate.
On my bad days, I worry I will have a cancer recurrence and will not be able to restore a positive body image. I am working on those feelings through therapy, and it is making a difference.
I am grateful that I have the strength and courage to face these challenges and not be overwhelmed by them. Being a survivor of both HIV/AIDS and cancer has reignited my life and made me less fearful of the future. I’m thankful not just to be alive, but to have the strength and courage to face both the good and bad in my life and to thrive.
Mr. Garza lives in Laguna Beach, California.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.