In early May 1994, my left testicle had pain. Since I had been mountain biking the day before, and the pain went away totally in less than a week, "Just a little blunt trauma, that's all" I thought. In late June, I started having discomfort in my back and very bad hemorrhoids. Over the course of several weeks back and forth with my primary care physician and several different possible diagnoses, I was diagnosed with a testicular tumor by the urologist on 22 August 1994, ultrasound also showed a large "shadowy mass" in my upper abdomen.
Cancer -- and it had spread.
It took about 20 minutes for me to realize just what the urologist had said...I remember very little of my visit with the urologist after that point. He set up appointments with medical and radiation oncologists, recommended sperm banking to cover the bases, and tried to send me directly to the hospital for the orchiectomy. Since my brain had turned to mush by this time, I asked to delay it a day so that my wife and I could come to grips with the situation.
TYPING/STAGING AND INVESTIGATION
Abdominal/pelvic CT scans, chest X-rays, and the orchiectomy were done the next day. Recovery from the orchiectomy was pretty good for me, it actually was better than an appendectomy I had a year earlier. Pathology report took about four days to complete, pure seminoma, scans showing advanced Stage III (by one staging scale) with bulky mass 8 cm x 7 cm x 10 cm in the upper abdomen, chest X-rays were clear. At this point I had settled down a little, and decided I needed to do some research to understand the disease, treatment, and prognosis.
The urologist recommended Campbell's Urology (a very thick medical text), which had a lot of good clinical information about physiology and treatment. Having at least some data when meeting with the oncologists made me feel a lot better. Meetings with the oncologists confirmed that I would need chemo due to the advanced stage.
PREPARING FOR TREATMENT
Since these people were basically going to be poisoning me, I decided that I needed to be on a first name basis with them, to which Victor (medical oncologist) was agreeable. He is about my age, which helped me a lot, I felt that he had a good understanding of my feelings. Throughout the entire process he and everyone in his group treated us with the utmost of respect and compassion. Victor let me delay the start of chemo for about 10 days to allow a few more deposits in the sperm bank. I do have to say, the first ejaculation after the orchiectomy was VERY painful. Within a couple of days it got easier, which is good because I can't think of a worse "disincentive"!
Victor recommended a Groshong catheter to assist in IV chemo. This turned out to be a tremendous boon, since chemo, medication, transfusions, and blood work can all be done through the catheter. Daily care of the catheter is imperative, but worth it as I estimate it saved over a hundred different needle sticks, and I never had a problem attributed to the catheter.
The next day I shaved my head. I decided that if there was anything I could control in this entire process, I would. Cutting my hair off proved to be harder than I thought. The man in the mirror looked very strange and pathetic and scared, with the added insult of a tube sticking out of his chest.
Two days later I started chemo.
CHEMO, THE EARLY DAYS
The chemo was done on an outpatient basis at a local hospital. There were two outpatient chemo nurses, Sue and Mary. They work somewhat separate from the main oncology ward, and since you are also outpatient they have a little more freedom in how they do things. They were expecting me to be a "difficult patient": young, male, etc, so they were a little rough on me the first couple of days, trying to break my spirit and force me to submit to their will(!). They told me later that I was not as much trouble as they expected because I came in relatively informed and totally convinced of the necessity of treatment.
Words to the wise: Be on good terms with those that administer the poison!
The first cycle was pretty difficult. I was not getting enough fluids during the first week, so I had to spend a night in the hospital on IV fluids. After that they increased my pre- and post-chemo hydration to a full liter. Sue and Mary gave me a new mantra, "Drink and pee, drink and pee..."
I was receiving Kytril as an anti-emetic (antinausea), which helps a great deal, but I still had a lot of trouble with nausea, and had trouble eating enough. Compazine was totally worthless for me, Torecan seemed to work better. I started the first cycle at 195 pounds, ended it at about 170. I later found that I had to force myself to eat something even though I did not feel like it. Even just a few bites during the worst times helped control weight loss, and helped me not feel SO bad, and to recover more quickly. Pedialyte worked well to maintain hydration, and was easier on the stomach than heavily-chlorinated tap water or acidic juices or sports drinks.
In the third week I got sick with some random infection, and spent 7 days in the hospital getting pumped full of expensive antibiotics. My white counts got very low and did not rebound very fast, so I started on Neupogen to stimulate white blood cell production. This was a VERY expensive thing, but did help me to stay out of trouble in later cycles.
CHEMO, THE REST OF THE STORY
The next three cycles went a lot better than the first as we started to settle into the routine. The Neupogen worked very well and we managed my diet better. I wasn't able to work very much, and took a lot of time off. Just when I would be recovering from the first week of the cycle, my blood counts would drop off. Given my experience in the first cycle, I wanted to avoid infections as much as possible, and since it was late fall I felt it better to just stay home a lot. Daytime TV without cable is tremendously boring!
CT scans were done at the end of the second cycle to confirm effectiveness of the treatment. Progress was good, so we kept going.
Near the end of the third cycle I started having trouble with anemia, so I received a transfusion of red blood cells. Near the end of the fourth I was anemic and had spontaneous nosebleeds, so I received transfusions of red blood cells and platelets. Benefits were immediate, within hours I felt much better.
CT scans were done at the end of the fourth cycle, to see whether we had gone far enough. We got these results on 18 December 1994, and received the best Christmas present ever when Victor said that I was done. It wasn't quite final for me until I had the catheter removed the next day. Once that happened I "knew" that I wouldn't be getting any more chemo.
CHEMO, THE AFTERMATH
It took me a little while to get used to the idea that it was over. My life had been turned every which way but loose in a short time, and I wasn't prepared for nearly as sudden a return to "normal". For a couple weeks I felt more comfortable emotionally at the hospital than I did at home or work, because I knew what was happening there, and wasn't quite sure how to behave in the world again. Also, until I received the final results, I wouldn't let myself believe that it was over, figuring that if I didn't look forward to the end I wouldn't be disappointed if it wasn't the end.
Even though the treatment was effective, the entire experience did not really go well. Sue and Mary said that we were doing wonderfully dealing with everything, which concerned both my wife and I because things were very tense between us during most of the treatment. Especially when it started getting physically difficult, I retreated into my "Martian cave", and rarely discussed how I felt with my wife.
I did not realize how much she needed that type of interaction. I assumed that I was the only one dealing with the disease and treatment, and that her life couldn't possibly be impacted as much as mine. Because she was indeed impacted by the disease and treatment, plus having to get me to and from the hospital and doctor's offices, PLUS having to assume almost total responsibility for running the other parts of our life, I often felt that she was not giving me the attention that I deserved. As such, I was often critical of her, at times even questioning her character, and her commitment to me and our marriage. This was unfair in the extreme, and I cannot even begin to make up for my rudeness and insensitivity -- I can't thank her enough for everything that she did.
Early in the treatment, we started attending a support group that meets weekly at the hospital. This group is moderated by a social worker at the hospital, with technical support from a nurse-administrator. This was also a big help for us, it gave us a group of people that absolutely understood what we were going through. Family and friends try, and they mean well, but sometimes they just don't get it. It was probably the best source of practical tips for dealing with chemo that we ever found. While it sounds grim and selfish, I found some comfort in comparing my situation with some of the other people, and realized that I was much better off than some.
At this time I am over two years post-chemo, with no trace of recurrence. Recovery took quite a while, in about one year of not-very-disciplined recovery I was back to 100% in all physical categories. The relationship with my wife, while tested, has survived and recovered quite well, and continues to be a source of great satisfaction in my life.
Sperm count was done at about one year post-chemo, just to check, levels are as good or better than pre-chemo. Without planning (but also without avoidance), my wife became pregnant in January 1996, and our beautiful, completely healthy baby daughter was born on 5 October 1996.
The people that we met in this process have become great friends. Sue and Mary love to see us when we visit. I am one of the few people that they actually get to help, so many of their clients have grim prognoses. Victor is almost as proud of our daughter as we are. We still visit the support group every couple months, we got a lot out of the group, and now is a chance for us to return the favor.