It was April 2004 and between work and school I was sleeping about 4-5 hours a night and was definitely burning out. I was tired and I noticed over that 2-week time that I had some blood in my stool. I figured I probably had an ulcer. To be honest, I really didn’t think too much of it. One day I remember having to go to the bathroom really, really badly. I was walking up the stairs and I got that feeling where it was URGENT and I really had to rush.
I got to the front door, then to our bedroom, and then I had an “accident.” I couldn’t believe it. I thought, “I am 28 years old and I just sh** my pants.” With only a few more steps I made it to the toilet. When I dropped my pants there was blood everywhere. It looked like a CSI crime scene. It was scary to say the least. I was still on the toilet trying to salvage some kind of composure when my girlfriend, Darcy, exclaimed through the door, “What’s all this blood on the floor?” Every 10-15 minutes or so I would run to the bathroom and every time I had to go it was bright pink blood. I thought, this is definitely not right. It was happening more frequently and had been going on for hours. I decided I should take myself to the ER.
When I arrived in the emergency room, they couldn’t see me right away, and just told me I couldn’t eat or drink anything. So I sat and waited for about six or seven hours before they saw me. Around 1am they finally brought me in the back and I broke it down for the nurse: blood in my stool for two weeks, major “accident” at home, and bright pink blood for hours now. Then the doc came in and stuck a scope up me, but he couldn’t see anything because there was too much blood. I ended up passing out and they rushed me into another room. My blood pressure had dropped from 120 to 70 in a matter of seconds and everybody was freaking out. The doctors decided to keep me in an observation room overnight until they could get the GI specialist in to do a colonoscopy in the morning.
When I started going to Cal State I got myself on their student health plan, but when I started my second semester I hadn’t gotten a renewal notice and didn’t realize it had expired. Apparently you’re supposed to just know to pay once a semester. When I called earlier in the week they said I had missed the renewal date so I needed to get this temporary insurance. Despite all my money troubles over the years, I had never been without health insurance, so of course I got the temporary insurance right away. I applied for it on the 17th of April and by the 23rd they approved me. Up to this point I had no health problems at all. According to their paperwork the policy came into effect at 12:01am on April 24, the same day I went to the hospital.
I had lost a lot of blood and the ER doc said, “We are going to have to schedule a colonoscopy.” Wednesday the GI doc, Dr. Bedford, came down to visit me prior to my scope and explain the procedure. I was two blood transfusions deep and I still hadn’t eaten since Monday, not to mention that I had spent the night prepping for the scope. I was ready for them to fix me and send me home. Darcy and I went down to the procedure room. An intern was there preparing me for the IV. We chatted a bit before I asked, “You’ve seen this type of thing before…what do you think?” He replied that it’s probably a hemorrhoid and fissure. I asked what the worst case scenario could be. “Cancer,“ he said, “but that’s one in a million so don’t worry about it.” I get knocked out and wake up with everything blurry. There seem to be bright lights shining in my face and I can’t place where I am, but realize on my left side Darcy is just crying and crying. I look up on the right side and see Dr. Bedford. “You’ve got cancer,” he says.
We found out while I was in the hospital that my insurance wasn’t going to cover me, my hospital stay or any of my surgeries. They said I had a pre-existing condition. (How the tumor was determined to be “pre-existing” when we’d only discovered it a day and a half after my coverage went into effect still escapes me.) I didn’t know what was worse, learning I had cancer or finding out that I didn’t have the coverage to fight it.
Fortunately, as the ordeal unraveled, we found out that a close family friend worked for St. John’s Hospital and she was able to get me a private room and pull some strings to get most of my stay comped. I had about a $75,000 bill just for my room that was forgiven. In addition, the surgeon who performed the colectomy decided to comp my surgery, too. I still had thousands of dollars in medical bills to pay, but this definitely was a blessing.
During surgery they found a stage III tumor at the rectal-sigmoid about the size of a grapefruit. Luckily, I was told, it had burst and caused the bleeding that brought me to the ER. Otherwise the tumor would have quite likely gone on undetected. However, the cancer had penetrated the colon wall and infected some of the lymph nodes. It was a pretty serious tumor as far as the doctors were concerned, and a crash course in cancer education for my family and me.
After having to move back in with my parents, the insurance continued to be a nightmare. I had to plan my radiation and chemo around what they would cover. I felt like I was on a sinking ship. I kept accruing bill after bill and had no way of paying them off. I was constantly on the phone with billing departments explaining my situation and working out payment plans. I learned two things:
1) The insurance industry is a bastard and there are lots of people in my position.
2) Medical providers will work with you either by setting up payment plans or negotiating your debt.
In addition, I started pursuing other avenues to help pay for my ever-growing debt via county assistance and grants. County assistance helped a little, but there were strings attached. They would cover most of bills after I paid an out of pocket cost of $1,600 each month. However, my disability income was also exactly $1,600 a month, leaving nothing for living cost. I applied for additional grants like the Babcock Fund. They are a charitable trust who help people going through medical treatments. The Babcock Fund turned out to be my ace-in-the-hole, covering my out of pocket expenses and some of my radiation treatments and chemo. I was able to make it out of a year of treatment without declaring bankruptcy or ruining my credit. I am absolutely grateful for the much needed financial support.
My parents’ support also played a huge role in my recovery, both physically and financially. They were awesome!! My mother and step-father both went out of their way to help in my transition to living back at home. My mom was a real advocate for me at the doctors’ offices and with the insurance companies. She drove me to a lot of my appointments and made sure I received the appropriate care despite my insurance woes. My step-father supported all of us and remained a voice of reason and a solid foundation through everything.
The treatment consisted of eight cycles of FolFox (5FU, Leucovoran, Oxaliplatin), followed by radiation with the chemo 24-hr fanny pack. (I called the pack “My Buddy” and had him for a while.) When I did the chemo, I would do the Oxaliplatin and 5FU–it makes me kind of sick even now thinking about it. I got the 5FU push and then My Buddy for three days. After the radiation, I kept My Buddy with me and had radiation and chemo. So I had 12 cycles total, including the eight with the fanny pack.
When I was first diagnosed I found the experience to be very humiliating–not in a bad way, but definitely physically humbling. Being naked, poked and prodded, and having all sorts of doctors, nurses and specialists examine you and your most private parts is tough. It was a physical breaking of sorts – the kind you see explained in a montage set to music at the movies–but that I could take. Knowing my very life itself was out of my control…that was the knock-out punch. That first day back in April I was no longer Christopher, the 20-something-guy-who-was-getting-close-to-figuring-out-his-life. I became Christopher the Cancer Patient. Everything I did revolved around the disease. I was also trying to manage my personal life and my family life, to stay strong for those who were staying strong for me. As you can imagine, we were all going through a lot of hard stuff. I felt like I had been dealt a hand I had to play. It was all I could do to keep a positive attitude and take things day by day.
For a few months things were going great, then in December 2005, I had a follow up CT scan. I heard my radiologist utter the dreaded words, “We think we may have found something.” We followed up right away with a PET scan that confirmed everyone‘s fears: the cancer had come back in my lymph nodes–ironically, just above the area where I’d had the radiation. Merry Christmas.
I had a Lymph Nodectomy on January 19, 2006. The surgeon cut from sternum to penis and performed a surgery similar to what one would do for testicular cancer. He removed 12 lymph nodes along my aorta. The procedure proved more invasive than the first one–the scar itself is three times the size of the first operation. I had a much slower recovery: a lot of back problems and a lot of pain.
I have to say the second time around was much worse than the first. The recipe this time consisted of 5FU, Avastin and Irinotecan…really, really rough. I was supposed to do 12 cycles of the cocktail. The treatment made me so sick I would throw up before I arrived at the hospital, just thinking about it. I would sit down in the chemo chair and throw up before I even started. Then I could barely make it home and would lie in bed for hours. I got to the point of pleading with my oncologist, “I don’t know if I want to do this anymore.” The doctors advised to just go in again, but I couldn’t do it. The treatment was kicking my butt.
After the 7th cycle, I thought I was going to die. When you’re throwing up and your nose is running and your stomach hurts and you’re weak…you have no control. At almost six feet tall I weighed just 158 lbs. and could barely eat. I knew I had two choices: I could go with it and do the best I could, or I could stop. I remember one night in particular I was throwing up so violently I couldn’t even stand up, and I thought there is no way I can do this anymore.
After that my oncologist let me stop, satisfied to get the seven rounds in me. I saw my radiologist at the beginning of August, who wanted to do 28 cycles of radiation. I finished my last radiation treatment October 17, 2006. The next day I went to Maui for 10 days of much needed vacation.
I don’t want to say I gave up, because to me giving up is saying you’re not even going to try. I sure as hell tried to get through the treatment, but I felt like the chemo was bringing me closer to death than anything else. It didn’t help that the doctors only gave me a 50/50 shot that the chemo was needed in the first place…meaning I was possibly putting myself through the nightmare for nothing. So I stopped. Even now, over a year later, just the thought of getting a saline injection makes me nauseous. (Hey, I used to have a strong stomach!)
Cancer has affected my life in other unexpected ways as well. Before I had my second surgery the urologist told me there is a small chance they would damage the nerve that enables a man to ejaculate. Not that I wouldn’t be able to have an orgasm, but damaging the nerve would make eventually having babies a little more scientific. He told me it might be a good idea to bank some sperm. I agreed. A few days later the urologist called. He explained that a male usually has about 80,000 sperm in a deposit: I had about 6,000. “I gotta tell you,” he warned, “There’s not a good swimmer in the bunch.” I guess two years full of chemo and radiation don’t do wonders for a guy’s DNA. We passed on storing the sample.
When the surgeon performed the surgery he did indeed involve the discussed nerve, and now I’ve got the best birth control ever. Darcy likes to threaten me with triplets or quadruplets, since when we decide to have children it will have to be via in vitro fertilization. Making babies isn’t going to be as romantic as it might have been intended, but it will make answering that whole, “Where did I come from?” question a bit more interesting. We’re a few years out from the decision anyway…no rush just yet!
As of August 2007, I have a clean bill of health. My last colonoscopy was perfect. My CEA is .7 and life is treating me pretty well. Darcy and I just moved into a gorgeous new house and business is great. We’re pretty regimented about staying healthy around here, too. I am extremely goal oriented with my fitness and have become somewhat of a “gym rat.”
I look back now at how I lived in LA before cancer entered my life, and I see how I was doing all the right things for all the wrong reasons. I didn’t have a plan, I didn’t have any priority…I just “wanted,” but I didn’t know why. One of the things that having cancer did for me on a different level, aside from making me very health-conscious, is to be able to step back and look at and prioritize my life. I look at what’s important and do the things that make me happy. The experience taught me to focus, and now I have a whole new perspective on things – working honestly, working smart, and working better (although I still have to figure out how to get away from the 7-day work week!) I do the small things that are going to make my life better and easier, for me, not for anyone else or for an image I‘m trying to project.
I may be done with the last care-free chapters of my life, but I wouldn’t trade who I am today for anything.