I was getting ready to go out to dinner and I was shaving my neck when felt a bump. I had a bad cold so I thought it was a swollen gland. But it didn’t go away so I had it checked out by an ENT doctor in Los Angeles where I live. My doctor thought it might be a cyst so we decided to remove it surgically. While recovering from the procedure in the hospital, my doctor came into the room and I will never forget the expression on his face. He gave me the bad news. What we thought was a cyst was a lymph node that cancer had spread to from somewhere in my head, most likely my throat.
I was 45 years old with stage 4 cancer. Nothing in life can prepare you for the shocking moment you find out that you have cancer.
The diagnosis confused me. I never smoked or chewed tobacco and did not drink heavily. But I had a risk factor that 80% of adults also have – exposure to HPV.
Having to tell my three kids that Daddy had cancer was not easy. Over making pancakes, I told them that I was sick with something called cancer and I would be in the hospital a lot—and that I might look different sometimes, but I was still their Dad.
My cancer presented as an “unknown primary,” meaning my doctors couldn’t find where the cancer originated. This led to a surgical procedure called a neck dissection on the right side of my head that removed dozens of lymph nodes, my tonsils and other tissues. After the surgery, I looked like Frankenstein’s monster as there were about 50 staples down the side of my neck. My kids were scared to look at me. The procedure revealed that the cancer had not spread. However, the primary location was still unknown.
After a few weeks of recovery, I visited the MD Anderson Cancer Center in Houston with my wife and my father, a retired dentist who had seen a number of oral cancers. With a few tests, the doctors there were able to quickly pinpoint the primary site of the cancer at the base of my tongue, which was a huge relief. With the primary known, they made a treatment plan. It would have been easier to be treated in Los Angeles, but I drew confidence in MD Anderson’s medical team and I wanted the best chance at survival.
Commuting to Houston
For seven weeks, I would fly to Houston on Monday mornings and go directly into the radiation treatment center. Once there, I lay down on a table attached to a radiation machine and a custom-made fiberglass mesh mask would be placed over my head and shoulders and fastened onto the table in order to avoid any movement of my head during the 15 minute session. During the session, I couldn’t feel anything but the machine made all sorts of strange loud noises. I had radiation treatment daily from Monday – Friday and chemotherapy once a week. After the last session of the week, I flew home to LA.
I was quite fortunate to have a job that I could perform remotely as long as I had access to my phone and the Internet. I think working gave me a distraction from living a world of my cancer.
Getting through treatment
Slowly over time, I could feel and see the treatment effects. The chemo caused a very significant rash all over my head and scalp. I knew it was bad when my oncologist called in the MD Anderson photographer to take photos. The rash was not really painful but I was a bit self-conscious when I would have to get on that Friday afternoon flight back to LA and wondered what infectious disease other passengers on the plane thought I had.
The radiation caused its own set of problems. Over time, my sense of taste changed dramatically. I also had difficulty swallowing because of swelling in my throat and my inability to produce saliva. My voice turned raspy and hard to understand; I had to moisten my throat to speak clearly. When all that was happening, I also started feeling fatigued. I would fall asleep in waiting rooms all the time and during my chemo treatments.
My nutritionist gave me the choice of either eating 1,500 calories a day or having a feeding tube. I chose the former. So, I ate runny eggs for breakfast and milkshakes or smoothies during the day. When soft foods became difficult, I switched to Boost drinks. I lost a lot of weight.
About mid way through my radiation treatment, the skin on my neck got darker and started to break down. After the treatment, the earlier chemo rash on my head was disappearing but my radiation neck rash looked worse, like a very bad, blistered sunburn.
It took me about three months to get my strength back and perhaps a year to fully recuperate. Thankfully, all of my post-treatment scans and checkups have been good news so far.
Going through all of this had a major impact in my life and how I want to spend the rest of it. You might say I hit a reset button and reevaluated my priorities. During my post-treatment checkups in Houston, my doctor (Dr Erich Sturgis) and I would often discuss MD Anderson’s research into HPV-related cancers. I began flying into Houston the day before my appointments to have dinner with Erich and discuss ways that I could help him and his team. I became fascinated with the idea that vaccines could prevent HPV cancers.
We decided that the most enduring method of support would be in the form or an endowment, now the Christopher and Susan Damico Chair for Viral Associated Malignancies, with a view to providing support for an HPV moon shot (approved in August 2015).
Since that time, I was also asked to become a member of MD Anderson’s Board of Visitors. Most recently, I became a Patient Advocate for the “SPORE for HPV-related Diseases”.
I feel very, very lucky to still be here; surviving the five-year mark was a big deal. Having cancer changed my life so much— but it might have ended it. My kids have all been vaccinated against HPV. There’s a miracle vaccine out there that some parents still don’t know about, or aren’t sure what they think about it. I find it shocking that there are parents out there who haven’t gotten their kids vaccinated. We actually have the vaccine for HPV cancers like mine. We can prevent cancer of the cervix, vagina, vulva, penis, anus, throat, tongue, and tonsils. According to the CDC, over 30,000 Americans get HPV cancers ever year. Unfortunately, I was one of them.
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