My husband Darryl found a lump on his right testicle in mid-January while showering. He did not tell me. January was a busy month; Darryl was on a stressful rotation at work and he had been selected to attend a conference out of town. He didn't want to think about what it could be-- as a medical resident, he already knew that it was probably cancer.
He finally told me on February 11 while we were watching TV. He sounded very nonchalant; he had found a lump on his testicle last month and in a few weeks he was going to get it checked out. He was going to wait and see if it was an infection that might go away. I did not realize that it was anything serious-- in my mind it was definitely an infection.
However, the next day I kept replaying the scene in my mind. It bothered me. I didn't think he needed to wait a few weeks to get it checked out. When he got home from work the next night, I voiced my concerns. He agreed and admitted that it had hurt the whole day. He saw the urologist on February 16 and the orchiectomy was scheduled for February 20. I still had no idea this was anything serious--I kept thinking benign lump. The night before surgery I turned and asked Darryl if he thought he might have cancer (totally expecting no to be the answer). He sighed and looked at me and told me that most testicular lumps turn out to be malignant. I asked him again if he thought he might have cancer. I had no idea that malignant meant cancer.
We have no family where we live. I took off of work for the surgery and had to arrange for a coworker to pick up our 6 1/2 month old son from daycare and keep him, possibly overnight. When we arrived at the hospital, the urologist asked me if I had any questions. I replied that I didn't know as I was sure that Darryl was keeping me in the dark about his condition. The urologist said that he didn't blame Darryl; he would have done the same thing.
Those few hours I waited for the surgery to end were unbearable. I started to realize what was going on. What if Darryl had cancer? What does that mean for us? What do we do? Here we were both 28 years old with an infant son, new house, no family nearby and we have cancer. The dark thoughts kept intruding...what if he dies... what if... what about life insurance--we don't have nearly enough...what about all the debt...what about our son not knowing his father...what about all the wasted time...what if.............
The urologist came in. I asked about cancer. He thought Darryl was stage I, mostly teratoma, and surveillance would probably be the way to go. Thank God, I thought, it was cancer but now it is gone. A wave of relief overcame me and I burst into tears in an empty room all alone.
A week later, the pathology report came back-- mostly non-seminoma, embryonal, with a small amount of vascular invasion. Also, Darryl's AFP went up. They did a CAT scan and found no positive nodes. We waited a week, and the AFP went up again. They figured he was now clinical stage II. At this point, I started to ask off of work to go to doctor's appointments. As a teacher, I only get 5 sick days a year. I had already used 2, plus I began the year missing 8 weeks because of maternity leave. I was becoming a high-maintenance employee. Schools do not like high maintenance employees.
We had a conference with the urologist, who said we had a choice: RPLND or chemo (and maybe RPLND later). He said he felt RPLND was the way to go because, although abdominal lymph nodes did not show up positively, there was a good chance that that was where the cancer was spreading. He thought that it was just at the microscopic level, which was why it didn't show up. But, he said, after RPLND Darryl would probably have to follow up with chemo. [Editor's note: Studies have shown that an RPLND would not have cured him. The urologist was incorrect, and chemo was the proper choice from the start.]
I felt totally out of my league. Every time I wanted to clarify something, Darryl did not want to discuss it. Every time we went to the doctor's office, Darryl and the doc talked medically, so I didn't understand. They left me in the dust. Finally, I yelled that I was making an appointment for myself. I had questions that I wanted answered. Darryl agreed; he was too upset to explain to me in simplistic detail what was going on. So I would go to the doctor and ask myself. Luckily, the urologist (who was soon becoming a friend) called to check on us while driving to the airport. I talked to him for a while; he answered all my questions and reiterated our choices. No one had brought up the fertility question. The urologist explained that if we had RPLND done here, he could not guarantee that it would be nerve sparing. Therefore, if we wanted more children, we needed to go to a fertility clinic to freeze sperm.
Darryl and I had a decision to make: chemo - less invasive or RPLND - major surgery. As a surgery resident, Darryl was totally inclined to do surgery. I rationalized that chemo was the way to go, especially since AFP was not very high (though elevated), and he would probably have chemo after RPLND anyway. That week we both did a lot of research. A friend of mine found the TCRC home page. I called fertility clinics to find out costs. I emailed people, and I read anything I could find about chemo and fertility and whether there was a link with birth defects. Darryl called a friend from medical school who was diagnosed with TC in 1993. But, he had a different type of cancer and had only done RPLND with surveillance. Darryl called Dr. Foster at IU who agreed that RPLND in his case was not necessary, especially since it would still remain a choice after chemo. We met with the urologist again on a Wednesday and made our decision: chemo was what we wanted. We met with the oncologist that day; to our relief, he had trained at IU and knew many of the doctors there. He immediately called IU to verify dosage and cycle amounts. Darryl would be getting the standard BEP over a course of 9 weeks. Every three weeks, he would get 5 days of EP with the B on every Tuesday for the nine weeks.
The fertility issue still had not been settled. Although we both wanted many more children, Darryl was reluctant to meet with a fertility doctor. I freaked out because time was forging ahead without any regard to the issues at hand. Darryl finally agreed to go on Monday to meet with the fertility doctor and make his first deposit. In my mind, I knew Monday was not going to work out. I knew Darryl was going to think of a reason or excuse as to why he could not go. Monday came; Darryl showed up at the house at the appropriate time. I knew this was not going to go smoothly. We still didn't discuss the cancer much, and Darryl was getting increasingly distant as Monday approached. I knew he didn't want to go, so I told him we could reschedule if he wanted, but that we needed to make deposits this week, since he was starting chemo the next week. He wanted to talk to the urologist because he didn't think it was necessary. Darryl was at work when I had discussed fertility with the urologist, who was now out of town for a week at a conference. I waited in the car. Darryl never left the house. When I went inside (we were late for the appointment) to call the clinic, Darryl kicked Christopher's high chair, which flew across the room and shattered a drinking glass.
The fertility issue was taxing him because he did not accept the fact that he had cancer. He felt good; he looked fine; he did not have any signs that he was sick. He was still working and refused to look mortality in the face. He was a resident steadily working hard to be an experienced surgeon. He treated sick people--in his mind he was not a sick person.
We finally got to the clinic where the doctor went over all the protocol and figured we'd be able to only get a few samples since Darryl was starting chemo the next week. Darryl refused to deposit a sample. When we got home I pulled into the garage and bumped some metal chairs with the car. Darryl flipped out. He took everything in the garage and threw it all over the yard. Tiki torches, car ramps, a Little Tikes car, Christmas tree stand...you name it, if it was in the garage, it flew across the yard. I let him go for it and went inside. I knew this was his first dose of reality and the beginning of his acceptance of the situation. I went inside and cried in the bedroom. A few minutes later I heard him sobbing in the dining room. I went to him and we melted to the floor, entwined in each other's arms, crying for him, us, our child, and what we were about to go through.
Darryl made it to the fertility clinic twice. They were only able to get 2 samples to freeze. I did not get the numbers, but the andrologist told me that the motility and quality were excellent, but that his count was very low. If we were to need the frozen samples, we would need to do In Vitrio Fertilization, which would cost about $8,000 each try. As a Catholic, I agonize every day about this fertility procedure. It opens up a variety of ethical and moral decisions I hope we never have to make.
Chemo started the next week. Luckily, the cancer nurse was the mother of a former student of mine; she was very helpful and reassuring. The first three weeks of chemo went very well. Darryl did not get sick, and he still had his hair. Even though the nurse told us that she had never met a TC patient who did not lose his hair, we thought Darryl would be the lucky one who kept his hair. Unfortunately, during the fourth week, it started to fall out; I shaved it for him (and it took over an hour!).
That fourth week was miserable for both of us. His veins got infected. His hematocrit went very low, and they had to watch him carefully to see if he needed a transfusion. Luckily, he did not. Darryl started to get weak and dehydrated. Christopher started teething and suddenly wouldn't go to Darryl anymore which made Darryl feel awful. I had been leaving school on my break to bring him to the doctor's office, then leaving again at lunch to bring him home. I missed parts of 3rd period often, and I missed lots of 7th period. Both the administration and the girls were extremely understanding. I was falling apart at work from the stress. I was o.k. as long as everything was routine. One day, a review committee came to school to renew the school's license. I started crying uncontrollably and the teachers had to hide me in a bathroom stall in the teacher's lounge until the committee was out of sight. If anyone asked me anything, I would cry. A teacher would ask me if I was O.K., and I'd shake my head no. She'd ask me if I wanted to talk about it and I would shake my head no. I had to designate a coworker to inform everyone what was going on.
When the seventh week was approaching, Darryl and I knew that Christopher had to be sent to his grandparents. We spent the weekend before driving him 6 hours away from home, and my parents were going to drive him back the next weekend. It was both sad and a relief for us.
That last full week of treatment was scary; Darryl had begun to look sick. He was dehydrated, so his eyes were sunken in, plus they had huge dark circles around them. He had been taking Phenergan to suppress nausea, and as a result, he slept a lot. There I was alone, looking at a shell of the man I met when I was 16, the first boy I ever kissed.
We made it through, and each week that passed he felt better. He is now 6 weeks out of treatment and due for his second post-chemo check up. His hair has started to grow back, but he has decided that he likes the bald look (??!!), so I shaved his head again yesterday. He grew a goatee, and at least this look is in right now.
I think I am still in denial about what we've been through. I have heard so many horrible comments, and know just about every relative of people we know who have died of cancer. We have received every religious medal and novena that exists for sick people. We are on many prayer lists. I have heard from people that now Darryl will be a more compassionate doctor. I have heard that I need to be strong for him. I have heard every cliche ever invented. I don't know why we got cancer, and I don't think it makes sense to sit and think about it. Darryl is starting to talk about the experience more; I cannot fault him for the way he handled his situation, because it is his situation. I look forward to the day when cancer is not my prevailing thought. I try to focus on the positive, that God was gracious; Darryl's tumor hurt, which was why it was found. I am thankful to have a wonderful husband and a beautiful son. If God is willing, our family will continue to grow and our house will always be too small to hold the love we have.
Jennifer
6-28-98
Epilogue: Despite 3 cycles of BEP chemo and a low sperm count, Jennifer became pregnant just 6 months after Darryl finished chemo! With twins!
