September 26, 1999
Well, lets see, how should I begin? It was late summer about four years ago, and I was showering as I do every morning before I leave for work. I've made it a ritual of sorts to do a testicular self exam every morning. It was more out of paranoia than anything else that I did this. I didn't know anyone who had testicular cancer and there was no one in my family with any history of it, but I had read enough about it that I didn't want it to happen to me. Anyway, that morning I felt a small pea sized nodule at the base of my left testicle near where the veins attach. I didn't think much about it at the time, but I did make a mental note to keep checking it to see if it would go away. As you might guess, it didn't.
It took me about three days before I finally convinced myself to get it checked out by a doctor. I made my appointment and went in that day to see my doctor. Since the appointment was made on short notice, he wasn't available and I ended up seeing a different doctor. The doctor was female, which made me incredibly uncomfortable, but I lowered my trousers and let her check the lump. Believe it or not, this exam was one of the more difficult parts of my journey through cancer. Up to this point in my life, I absolutely hated having my testicles touched and now here was a strange woman fondling them (rather roughly I might add). She could feel the lump, but she wasn't sure exactly what it was, so she called in another doctor. This doctor would become my urologist for the rest of my treatment.
This doctor also felt the lump. Initially, he thought it was just an infection due to the lump's location. He put me on antibiotics and ordered an ultrasound for me. He told me that the ultrasound was just a precaution and that the antibiotics should do the trick. I remember him telling me that if the lump went away before the ultrasound appointment that I could cancel it. One week later, the lump was still there and I was sitting on a table in the doctor's office waiting for my ultrasound.
The ultrasound itself was a weird experience. The technician squirted this warm goo all over my testicles and then ran a plastic probe around. It didn't hurt, it just felt kinda weird. The tech could see the lump but, as with most technicians, they aren't supposed to tell you anything good or bad. Something about them not being qualified to interpret the results. She (yep another woman) told me that the doctor would tell my urologist the results within 24 hours and that my urologist would let me know.
Two days later, my urologist said that the ultrasound was inconclusive. He told me that I had a few options. The first was to just sit back and wait for a month and see what happened with it and the second was a more radical approach. They would remove the testicle with the lump on it and test it directly. As scary as it might seem, I opted for the second one. I didn't like not knowing and if it was cancer, I wanted it removed as soon as possible.
Two weeks later, on my 31st birthday, I went in for the procedure. It was called a Radical Orchiectomy of the left testicle. I was under a local anesthetic during the procedure but I really don't remember any of it. They made an incision just inside my left hip and pulled the testicle up through my body and out the hole. I didn't know it before then, but that's actually where they attach to the body. I was in and out of the hospital in about four hours. They sent me home with a prescription of vicodin and told me to rest for a few days before I went back to work. The ride home from the hospital was pretty painful. I never realized just how many bumps there are in the roadways of California. Two days later I was back at work and impatiently waiting for the pathology report from my doctor.
It turned out that my doctor had a conference out of state to attend the day after my surgery and was out of town for a week. The pathology report was back, but I couldn't get any of the nurses to tell me the results. Talk about frustrating, I was pulling my hair out trying to get an answer and they just wouldn't tell me. Finally I got a different doctor on the line and he rather bluntly told me, "The pathology shows mixed germ cell cancer. You'll need to come in next Monday and go over the results with your urologist." That pretty much floored me. I kind of knew it was coming since the nurse wouldn't tell me, but it hit home when he actually said I had cancer.
When I went in to see my doctor, he explained all about the different types of cancer and how cancer spreads. He commended me on detecting this problem as early as I did and for aggressively taking actions to correct it. I wasn't really sure what he was talking about so he explained it further to me. He told me that many men are so self conscious about their testicles that they refuse to seek treatment. He related a story about a previous patient of his that waited until the lump was the size of a baseball before he sought treatment. I found my lump very early on and made a very good decision to have the testicle removed when I did. I was pretty happy with that and I was thinking that this whole ugly nightmare was over when he told me that he wanted to do another procedure. It was an exploratory procedure that removed a few lymph nodes along my spine. He explained that these lymph nodes were the ones that connected to my testicles and if cancer had already spread, they would find it in those nodes. Since I had found this as early as I did, he didn't expect to find anything there, but it was a wise precaution to check them. He told me the only way to beat this type of cancer was to be more aggressive than the cancer itself.
The procedure he recommended was no small procedure. It is referred to as an RPLND. Since the lymph nodes are along the spine, they can't just cut into your back to get them, they have to go in through the front. They make an incision that runs from the sternum all the way down to about an inch above the penis. That's about a fourteen inch hole! Once they make the incision, they just lift everything out of the way until they get to the back and then they cut the lymph nodes out. This definitely fell in the category of major surgery.
I know I haven't mentioned it to this point, but I was married at the time. My wife (now ex-wife) wasn't much help during all of this. She was the type of woman who depended on me for everything and didn't handle the stress of the situation all that well. I pretty much made all decisions associated with my treatment on my own. One of the decisions I now regret was not to bank sperm. My doctor told me of a possible side effect of the RPLND surgery and that was retrograde ejaculation. It's caused by damage to some of the nerves that control the muscles that close off the path to your bladder during ejaculation. You still orgasm, but the sperm goes back into your bladder rather than out of your body. Anyway, I had been married to my ex for twelve years at the time and we had no children. I knew my ex did not want children (even though I desperately wanted them) so I didn't see much point in banking anything.
Preparation for this surgery involved donating two pints of blood and taking this stuff called Golytely (I think that's how it was spelled). Anyway that's about the worst name anyone could have ever come up with for the stuff. It's designed to help you empty out your bowels and boy does it ever work. I took the stuff, which tasted a little like salt water, and was watching TV on the couch waiting for it to work. About a half an hour later I raced to the bathroom and barely made it. I must have sat there for about two hours straight just going and going and going. By the time I was done, I was going a clear liquid stream. I felt like I had had a toilet bowl brush jammed up there and run back and forth until I was clean. Well, that's probably more than you wanted to know so I'll move on.
I went in for the RPLND surgery one week before Christmas. The surgery was supposed to take about four hours and my recovery about five to ten days. While I wanted to be home for Christmas, to be honest, Christmas wasn't really on my mind. I just wanted to get this over with and move on with my life. If the dissection came back with no signs of cancer, all I'd have to do was have a CAT scan every year for a few years. I thought to myself, I can deal with that. Well, the surgery lasted almost six hours. Nothing really went wrong with it, it just took longer than expected. They didn't even have to use the blood I had donated. I woke up as they wheeled me into my room and I was in a great deal of pain. The nurse handed me a cord that had a little button on it. She told me that if I was in pain, just press the button. The button activated an automated morphine dispenser and I was very grateful to have that set up. I hit that button a lot over the next couple of days. I was still pretty groggy from the surgery and it wasn't long before I fell into a deep sleep.
The next morning, a nurse woke me up and handed me a tube about the size of a toilet paper roll and told me to blow into it. The tube had three little plastic balls inside it and I had to blow into it until all three were in the air. This was to make sure that my lungs had cleared after the surgery. With the size of the hole I had in my belly, it was very difficult and very painful to try and compress my lungs and get those little buggers in the air but I managed to do it. I had to hit my friendly little button a few times afterward to make the pain go away but it eventually subsided. I figured they would leave me alone then, but the nurse told me it was time to go for a walk then. "A Walk!!", I thought, "She's got to be kidding me", but unfortunately she wasn't. She managed to get me upright and it was then that I first realized that I had tubes coming out of me all over the place. I had a suction tube stuck in through my nose that went down into my stomach, an IV in my arm (that's the one where the morphine went in), and a catheter stuck inside my penis (brrrr..it still gives me shivers).
Walking was difficult. With a little help, I made it to the nurses station and back to bed where I promptly fell asleep for about six hours. The nurse told me later that walking would help me recover quicker, so I made it a point to walk as much as I could over the days to follow. I'm sure it became a regular sight for the nurses to see me doing laps around the hallways about every two hours. From the second day on, I began to feel a lot better. I wasn't using the morphine button and my mobility was coming back. On the third day, they removed the morphine IV. I couldn't go home though until I had a bowel movement. They told me that the bowels go into a kind of shock after surgery like mine and that it took a few days for them to sort of wake up. The days continued to roll on and on the fourth day I convinced the doctor to remove my nose tube. Ugh what a disgusting thing that was. They had run about three feet of tubing in through my nose and down to my stomach to keep my stomach empty. Having that come back up all coated in slimy stomach acid was terrible, but I was glad to get rid of it. The catheter stayed in for another day and it too was unpleasant to remove. They deflated it first and then the nurse told me to hold on to my penis while she pulled it out. I have no idea how they got that big of a tube in such a tiny little hole. Anyway, I was finally free of tubing and it felt pretty good. I was ready to go home now, but I still hadn't had a bowel movement. That same day, the doctor came in and told me about the pathology from the lymph node dissection. It turned out that they had found a few cancerous cells in the two lowest nodes (they had removed thirteen nodes). Just when I thought things were finally over, they started anew. Not much of a Christmas present I thought, but at least I was alive.
Finally on Christmas eve I had a tiny little bowel movement and they told me I could go home the next day. Christmas morning, the nurse came in with a small tray and a pair of pliers and removed my bandages. There on my stomach was what looked like a zipper. There were about sixty tiny little metal staples and the nurse proceeded to pull them out one by one. It didn't hurt so much as it itched. I just wanted to scratch every last one of those things. It felt kind of weird at first, like every time I would cough it felt like my stomach was just going to rip wide open. I was still in a lot of pain and that ride home didn't get any smoother, but I was finally home. I had two dogs at the time, a ninety pound Dalmatian and a sixty pound German Shorthaired Pointer. Both dogs are normally very energetic and would jump up and down on me when I had been gone for any length of time, but when I went into the house it was as if they realized that they couldn't do that. They both came up to me wagging their tails furiously but they didn't jump. It was good to see them, In the months coming, they would become my best friends. I went straight to my bedroom and lay down. My dogs both gently jumped up on the bed and lay either side of me and snuggled in close.
About this time, I found out that I had Retrograde Ejaculation. I still had an orgasm and everything felt the same as it did before, but nothing actually came out. It really didn't make that much of a difference to me at the time, though I did feel a bit of a loss at losing much of my ability to become a natural father.
I actually went back to work right after the Christmas break. The only restriction that I had was that I couldn't lift heavy objects. My Urologist referred me to an Oncologist and I had an appointment with him in early January. He explained to me that while they were pretty sure that they had gotten all of the cancerous cells out of my body that a course of Chemotherapy was a good option to make sure that nothing had slipped by. He told me about the drugs they would be using and the side effects of the Chemo. He was very honest with me, but having never actually had the treatment himself, I don't imagine that even he knew the full effects. They were going to use three drugs, Cisplatin, Bleomycin, and Vinblastine. The Cisplatin was the really nasty stuff, it's a derivative of platinum, and it's really toxic for the body. The way that Chemotherapy works is that it attacks every cell in your body. Fast growing cells like cancer don't have time to repair themselves before they divide and they are killed off. The rest of the cells are damaged, but they repair themselves before they divide and live on. Anyway, I didn't realize at the time that the attack would be on my whole body.
In January I had my first CAT scan. Basically, it involved laying on a table and having a big donut pass over you. The night before the scan, I had to drink a Barium Sulfate solution which to me tasted like what you would expect latex paint to taste like. Just before laying down on the table, they had me drink another type of barium solution which tasted like dishwashing soap. On this first scan (thankfully only on this one) they also gave me a thick barium mixture that I had to swallow to coat my throat. That stuff was the consistency of Lard and was very difficult to swallow. Lastly, they hooked up an Iodine IV and injected that as the machine took its pictures. The Iodine acts as a contrast agent so that the doctors can see better where the veins are. Iodine was weird, as soon as it hits your bloodstream, you can smell it, taste it, and feel it everywhere. It wasn't real bad, just kind of a warm sensation everywhere. The whole procedure took about an hour and I was on my way home.
The Chemo treatments were to last eight weeks and consisted of two courses. The first course was the bigger one and included Cisplatin, Bleomycin, and Vinblastine. The second course was just the Bleomycin and the Vinblastine. I did the big ones on Mondays and the little ones on Thursdays (Both courses ran at the same time). [Editor's note: This is not they way it should be done. Of course, they shouldn't have used Vinblastine either.] The way the routine worked was that I would go to the lab first and have blood drawn. They would check the blood to see what my red and white blood cell counts were. Then I'd go on up to the infusion clinic and the nurses would start an IV. Into the IV, they would inject the treatment chemicals. The only sensation I would get is a very cold feeling that ran up through my veins. After the treatment was in, they would flush about a liter or two of saline fluid in to try and make sure that the chemicals flushed in cleanly. It was about a four hour procedure.
I'm not sure if I have adequately described just how nasty these chemicals are. The nurses could use any one vein about two times before it shriveled up and disappeared. The chemicals would attack the vein and cause it to collapse. Even today, I don't have any big veins near the surface on my arms. I think back to before my treatments and remember what my arms looked like. I was very active in sports and I worked out at the gym. I had tons of veins that stuck out considerably from my arms. It was always easy to give blood and nurses never had any trouble finding a good vein. To further emphasize my point here, I had one particular treatment session where the IV needle backed out of the vein and allowed a small amount of chemical to go under the skin on the back of my hand. Over the next few hours, the skin turned an odd brown red color and it felt like my hand was on fire. Fortunately, there was no permanent damage, but I still remember the pain it caused.
The day after my first treatment, I tried to go back to work. I was pale and almost gray and totally exhausted. I only lasted about two hours before I let my boss know that I would be out on disability for the next two months. Aside from the exhaustion, the chemicals would make anything I ate or drank taste like it was made out of metal. Anything I did manage to get down came right back up. The doctors gave me anti nausea pills that helped some, but who wants to eat when everything tastes like metal? Over the course of a month, I went from 195 lbs down to 135 lbs. I'm six feet tall, so you can imagine what I looked like at that point. I remember one of my nurses actually yelling at me and telling me that I had to eat something every two hours. She explained to me that this treatment attacked my whole body and that it needed energy to repair itself. Even if I was eating normally, I wouldn't be getting enough energy to sustain my weight. I basically had to double my calorie intake. That was really tough, I was eating burritos and pudding and all sorts of stuff and none of it tasted any good. I did manage to put some weight back on doing that though so my nurses were happy.
During the first week, all my hair fell out. I mean everything, eyebrows, pubic hair, leg hair, everything. It was a very weird feeling to see all my hair just fall off as I showered. I didn't try and hide it though, I don't think I ever wore a hat during my treatment.
At about three weeks into the treatment, my blood tests started coming back bad. My white blood cell count was practically non existent. White blood cells are the ones that fight off disease and protect your body, which put me in a very vulnerable position. The doctor prescribed a drug called Neupogen for me. I kept the little vials in the fridge, and each day I had to fill a hypodermic and inject it into my thigh. I had to do this myself, as I said earlier, my ex wasn't much help during any of this. This fixed the white blood cell problem, but I had to continue giving myself injections for the remainder of my treatment.
At about five weeks, I started to go stir crazy. After all, there is only so much Price is Right you can watch and I hated soap operas. I tried to read, but the chemicals really affected my ability to concentrate, and I could never get through more that a few pages at a time. I had lots of computer games, but they too required too much concentration to enjoy. I ended up trying to sleep the time away. It worked pretty well for the first week, but at my next appointment I couldn't sit still in the chair. My nerves were shot. The nurse asked me how much sleep I was getting and when I told her, I got another tongue lashing. She told me that I was to sleep no more than eight hours per day and that if I really needed it I could take a two hour nap in the afternoon. The doctor prescribed some anxiety medication for me to help me relax.
I've kind of portrayed my nurses as ogres here. They really weren't at all. In fact, I got to be good friends with several of them and they took very good care of me. Each time I would go to the infusion clinic they would light up with smiles and say hi. They made me feel a lot better about what I had to do there.
To get through the time without losing it, I started taking long walks. The walks helped me a lot though it was still difficult to sit around the house all day. Occasionally a friend would stop by with a movie and sit and watch it with me. My ex was working as a retail manager at the time so I rarely saw her. When she would come home I would be so starved for attention that I would cling to her and she hated that. She was always pushing me away and it killed me (not literally of course). As I mentioned before, the dogs became my best friends. I would sit in my recliner watching TV and both dogs would climb up into the chair with me and just lay there. Anytime I got up both dogs would follow me. I couldn't even go to the bathroom with out them following and laying at my feet. I can't tell you how much they meant to me.
By the time I got near the end of the treatments, I was running out of veins for the nurses to use. They had used all the veins in my arms and on the back of my hands. Sometimes they would stick me two or three times before they would get a good vein. They also had to go with smaller and smaller needles, which made the treatments last longer and longer. If you think about it, I had to get blood drawn before each treatment day so I got stuck a lot. It got to the point where I hated to see needles. Even today, three years after the treatment has stopped it's still hard for me to give blood samples.
I finally made it through the last of the treatments and three days after they stopped I went back to work. Man, did I ever miss work. It felt so good to get out of the house and do something productive again. It didn't take long to get back up to my normal weight and energy level. I'd still tire fairly easily, but I could handle a full work day again.
My ex never seemed to recover. Don't get me wrong, we hadn't really had a good relationship for at least the previous five years but things were different now. She was never an affectionate woman but she was even less so now. I was thinking that I was somehow defective and that nobody would want me. It was a difficult time for me. I threw myself into my work, which did prosper, but the long hours didn't do anything for my relationship with my wife. We grew further and further apart until we were nothing more than roommates.
Just when I was about to give up, I met a woman who totally intrigued me. She was vibrant and exciting and very much into the same things I was. That was something in retrospect that my ex and I never had. She didn't like anything I liked and when I'd try and get involved with the things she liked, she would immediately drop them. Anyway, it wasn't long before my ex and I separated and I started seeing this woman. I told her right up front what I had been through. In fact I probably told her several times. I was actually kind of surprised when it didn't scare her away. It was several months before we were intimate, but I'm telling you it was incredible. I had forgotten how nice it felt to be truly intimate with a woman who loves you. She lived many miles away from me when we first met so we spent an incredible amount of time just talking on the phone. We learned so much about each other during that time that it felt like we had been together forever when we finally did get together. We've been together about a year now and we are still going strong. She couldn't care less about any of my cancer related idiosyncrasies.
We both want to have children now and while things are certainly more difficult, it's not impossible. We are seeking alternative methods, and all hope is not yet lost. However, I really wish now that I had banked sperm. If you are going through this now and have the option, I highly recommend banking. You never know what might happen. To tell you where I'm at now, I'm incredibly happy being loved by a woman whom I love very deeply. We are very active together and go for hikes and roller blade and do all sorts of things together. The only residual from the treatment (aside from the Retro) is that I have follow up CAT scans once a year (for the first two years after treatment stopped, they were every six months). I feel great and I love life, and I just wanted to tell you that you can make it through this and lead a perfectly normal life.