[Editor's Note: Longtime concert photographer Andrew Youssef found out almost two years ago that he had Stage IV Colon Cancer. In that time, he has continued to shoot tons of music events for our sister paper OC Weekly on top of other freelance work and working a day job at a hospital, of all places. As he continues to fight for his life, this series allows him to tell his story in his own words.]
Lindsey Best Andrew Youssef
By Andrew Youssef
There are a handful of diagnostic techniques used to assess the current state of my cancer. My blood is frequently analyzed for tumor markers of CEA (carcinoembryonic antigen) and CA 19-9 (cancer antigen 19-9), both of which roughly indicate how much cancer is roaming around inside my body and are used specifically for colon cancer patients.
When I was diagnosed, my CEA was 855 (normal is 0-5) and my CA 19-9 was an astronomical 10,337 (normal is under 55). About a year ago, while on chemotherapy the whole time, my levels dipped to almost normal levels, indicating a potential brief remission. Then, suddenly, both levels started slowly increasing. It was incredibly scary. I foolishly thought that since they were near normal, they would stay that way. I would just have to continue treatments.
Overall I was feeling better and gearing up for Coachella, scheduled then to happen in a couple weeks. My activities had increased as well: I was working 10-hour shifts at the hospital and shooting shows at night while squeezing in chemotherapy. The wrinkle in the story is that my chemo cocktail had been slightly altered to include a nasty drug called Eloxatin (Oxaplatin). That one wrecked my sense of taste, to the point that eating was unappealing and causing tingling in my hands and feet.
The first dose of it crushed me like a Slayer riff. I received the drug on Wednesday. On Friday after work I began to feel awful, a terrible bout of nausea and vomiting coming on along with severely aching stomach cramps. I vividly remember being curled up in a fetal position, wretched over in excruciating pain. To make things worse, I vomited my pain medication. One of the lower moments of my life. And adding insult to injury: I had to cancel shooting a show --My Morning Jacket in San Diego--for the first time in two-plus years of treatment.
Another unpleasant side effect was upper right-side back pain. Given my training as a pharmacist, I looked it up and saw that Eloxatin has roughly a 20 percent incidence of causing muscle aches. Also possible: my aches could have come from lugging two cameras around at concerts. Luckily I was scheduled for a PET scan, which analyzed my body for rapidly growing tumors.
I met with my oncologist and received some shocking news that explained my unusual back pain. My cancer had spread to my spine and I would need radiation to eradicate the tumor.
Really?! How does this happen? Haven't I suffered enough cancer? It was a cruel lesson to learn: Never be surprised by this disease's viciousness and tenacity. It wants me dead.
`My oncologist summed it up beautifully: Cancer is a terrorist. You know where it lives, yet it will attack anywhere, at any time.
I had been on chemo this whole time and my levels hadn't fluctuated greatly. Another concern was that radiation could potentially wipe me out prior to Coachella. Fortunately, my tumor could be treated with Cyberknife radiation, a focused treatment with few side effects and a high success rate. My schedule was so hectic that I would go in the morning for radiation and still work a full day at the hospital.
Ultimately, after three such treatments a dozen days prior to Coachella, the tumor in my spine was eradicated. It was exciting news that left me wondering: If the spinal tumor could be taken care of rather easily, could the ones on my liver also be destroyed? No, my radiation oncologist replied. The organ was too riddled with them for the machine to accurately zap all the necessary areas.
Still, I felt a glimmer of hope. My only goal at that point was to be physically and mentally ready for Coachella.