Don’t forget the socks
I woke up from my surgery angry. Really angry. I hate hospitals. Except for rare exceptions like births, if you are at a hospital, something is wrong — usually really wrong. Worse the entire structure is set up to make you feel sick. They don’t ever take into account that you might have things to do other than be at the hospital. Come and show up, wait for four hours, come back later in the afternoon, we will need to see you tomorrow, please come two hours before the surgery. They book procedures without even checking if it works for you. How can I be worried about scheduling when your life is on the line? Shouldn’t it take precedence? Yes it should and does, but the way they treat you just makes you feel more sick.
One of the funniest things I heard from a doctor was “well, if you had to choose a cancer, you chose the right one.” In retrospect he was right but at the time I wanted to run across the room and strangle him while shouting “I didn’t want any of them!!! Why did I have to choose any of them???”
One big mistake I made was around work and time off. I had no idea there was such thing as short term or long term disability. For whatever stupid reason I never talked to anybody and nobody ever talked to me about it. So I assumed I would have to take vacation if I needed time off to deal with the cancer. This really offended me. Cancer is going to take what it has taken from me AND my vacation? Hell no. I was determined to continue to work and in the end missed a total of about three days. This was a big mistake and I think it prolonged my recovery.
I could walk the next day after surgery, albeit slowly. By the second day I could make it to the end of the block and back. (I would hobble to the park and all the mothers would look at me like I was a prowling child molester. Odd how suspicious we all are these days.) I felt like a shell of a person. I fought with depression and my mind just felt really raw. The next day I went to work. It was really funny because people would ask “what is wrong with your leg?” as I limped by. I would smile to myself. If only it was my leg.
The tests started coming back and each one was coming back clear. My doctor gave Jul the blood work results while she was at an unrelated appointment. Clear. We also had an angel on the inside who made sure my tests got to the best radiologists. We made a deal that she wouldn’t call no matter what because we didn’t want to get into the guessing game. If she didn’t call, what does that mean? Fortunately she ignored my request and called with the results shortening our wait by a week. Chest X-ray, clear. CT scan, clear. My pathology reports came back verifying the doctors observation around spreading. It also identified the tumor as seminoma (as opposed to non-seminoma) the less aggressive of the two forms of cancer which also lowered the chance that the cancer had spread.
All of these positive results started narrowing the kind of treatment I would need. The fact that we couldn’t find it in my lungs or lymph nodes meant we could start to rule out chemotherapy. It also meant I wouldn’t have to go through an RPNLD which removed the lymph nodes in the abdomen and chest. This procedure sounded really unpleasant. Given you can’t know if it has spread for sure (without waiting to see if it has) you are basically playing risk management game in terms of how sure you want to be it didn’t spread.
All this time I kept fishing for any information that linked my cancer with depression but couldn’t get anybody to pay any attention. Most of them looked at me like “hey kid, we are trying to kill this cancer and you are worried about your mental health?” I had my first appointment with Dr Hancock, my oncologist and he threw me an amazing lifeline that was critical to my recovery. We decided it would be best to do radiation on my abdomen to kill any possible beginnings of spreading that might exist. Near the end of the appointment he asked me if there was anything else I needed and how I was doing mentally. I explained my current state of mind. His immediate response was “I have been doing this for 15 years and I can tell you with a high degree of confidence I can make sure you survive this cancer. There is a much greater chance you will commit suicide.” He immediately brought in a social worker who got me an appointment with one of the best psychiatrists in the area who focused on cancer survivors. We ran some tests and it turned out my testosterone levels were nearly non-existent which would explain some of my behavior. My radiation oncologist was the first doctor that had treated me as a patient as opposed to treating the cancer. This was a huge turning point for me and I started feeling like maybe I wasn’t crazy.
Jul and I had been planning a trip to Australia. The oncology team agreed it was more important that I was in good mental shape for the treatment than we start it right away, so they let us take the trip. I have never needed a vacation like I did at that point. The second week in Australia we disappeared to a island off of the East coast along the Barrier Reef. There were only ten other people on the island with us and it was glorious. I had just started anti-depressants and was starting to get a handle on my mental state. That being said it was sobering to be on a private tropical island with all of my needs being taken care of and still fight depression. It gives you a really good feel for how bad things had been.
I got back from Australia and started radiation. I decided I would do it in the morning at 8am so it wouldn’t get in the way of work. They had warned me they were radiating an area that covered my stomach, so I would probably struggle with nausea. I went in on a Monday to get everything set up. They mapped out my organs to try to target the radiation to the key areas and limit exposure to nearby organs. Once they mapped it out and aligned the beams, they tattooed several purple dots on my chest and stomach so they could guarantee the same alignment. Many people have expressed shock that they would permanently tattoo alignment dots, but these dots now serve as a really good reminder each morning in the shower of how much I should appreciate the day. I am very proud to have them.
They kind of caught me by surprise on the first day because it was supposed to be a dry run but they ended up going ahead with the first treatment. It was uneventful and I left thinking the whole process was going to be a piece of cake. I went to lunch with Chris and five minutes after we got back from lunch I was throwing up in the bathroom and spent the rest of the day curled up under my desk. This was a fairly standard pattern. We went through several iterations of different anti-nausea drugs and finally found Zofran which worked wonders. I was still pretty exhausted and I could feel this edge of nausea, but I didn’t want to kill myself. It cost something like $80 a pill, but if they had waited until I was severely nauseous after a treatment they could have charged me $1000 and I would have thought it was a great deal. Don’t tell the drug companies.
I went to my treatments alone. I thought I was tough and so I told Julie she should just go to work and I could handle the treatment on my own. My treatment occurred six months before Stanford opened their new cancer center. Prior to the opening, the oncology ward was in the basement of the hospital, which is a dark and dingy place with no carpeting and bright fluorescent lights. They called it the dungeon. When I got there, they asked me to undress, put on a gown, and wait in the waiting area. I got ready and took a seat. It was a bit of time before they came and got me so I had some time to think. I was cold (I hadn’t learned to bring socks yet). I was angry. I was naked in a drafty gown. I wished my wife was with me. I was really, really scared. I was a good way into feeling very sorry for myself when a bald little boy came tearing around the corner into the waiting area. He came screeching to a halt about two inches from my shivering knees and looked up at me. After about five seconds of sizing me up he said,
“Why don’t you have any clothes on?”
I realized, considering the situation, it was a pretty valid question. To be honest, I wanted to ask the doctors the same thing. Before I could assemble an answer, he had moved on.
“What are you going to be for Halloween? I am going to be Bob the Builder. My dad is going to be Mr Sabatini.”
My mind raced for an answer: a shivering cancer patient, Mr. Clean, Radiation Man? Again, I was too late with the answer.
“I named all of the fish,” he said, turning to the aquarium that contained about 50 fish. “Rick, Bob (the builder), Jason, Sharon (the nurse), Sally (his sister) …”
This boy was four years old and had leukemia. As I watched them prep him for treatment and he continued to name the fish I thought, if he can go through this, have no idea what is going on, and still be this excited about life then I can handle this.
I sucked it up, started bringing socks, named some fish, and finished my treatment October 31st, 2003.