I had heard of testicular cancer and the process of checking testicles exactly once in my life. So, when I by chance noticed that my right testicle felt about 3 time's normal size and square, I feared I had testicular cancer. Possibly out of fear I delayed seeking treatment. There was no pain. I had had a varicocele, and I rationalized that it had probably just swelled up bigger.
I delayed about 3 weeks and then decided I better get to a doctor, so I got an appointment for the next day. There were other symptoms I now know were because of the masses in my lymph nodes. I thought I was just getting old. These are symptoms that I think were caused by the large tumor behind my stomach:
The doctor (actually a physician's assistant) examined the testicle and told me I should make an appointment with a urologist as soon as possible. It was a 5-minute appointment. I called a urologist the physicians assistant recommended and said the magic words "hard mass on my right testicle" and got an appointment for the next day. The urologist examined me (felt the testicle, my stomach, and my chest). He immediately told me that it was highly likely that I had testicular cancer. He said we could schedule an ultrasound, but it probably wouldn't tell him anything he didn't already know. I wasn't expecting such a quick and devastating diagnosis, but I scheduled the orchiectomy for the next week. He was fairly optimistic and held out the possibility that chemotherapy and further operations might not be necessary.
First complication: I was recovering well from the orchiectomy when a pain in my right leg began to get worse instead of better. I thought I better slow down in walking around and not work the leg too much. Unfortunately it kept getting worse and the leg swelled up quite a bit, so I called the urologist who performed the operation. I painfully hobbled in for an examination and he told me it appeared to be a blood clot. I needed to go back to the hospital for treatment. He wanted my regular internist to admit me since he would be a better person for treating blood clots. This was a problem because they had trouble getting a hold of my regular doctor, and I ended up being admitted through the emergency room after many hours of waiting without being treated. I did get some morphine after a few hours.
It turned out I had a very bad blood clot because I had a very large tumor in my lymph node that was constricting blood flow to the Vena Cava (a major vein). So, the whole vein was blocked up from my stomach all the way down my leg. I stayed in the hospital 12 days being treated with blood thinners for the blood clot, getting my CT scans and MRI (for the head) and getting my first round of chemo therapy.
There are some lessons I would pass on from having this blood clot:
Second complication: Before operating to put in a mediport, I had a blood test to check for infection (infection could make it necessary to take out the mediport). It turned out I had a staph infection. The staph infection made the blood clot more painful and required me to take intravenous antibiotics in the hospital and 40 days of oral antibiotics after I left the hospital. The infection was not a fun addition to the overall experience. An infected IV site was the source of the staph infection.
Lesson from this experience:
So, on the blood thinners and the intravenous antibiotics I started my chemotherapy. CT scan results showed the bulky tumors in the lymph nodes but no other clear organ involvement. Chemotherapy was the standard BEP regimen. They gave me a pill form of Kitrel. I experienced some nausea, not as bad as I was expecting from chemotherapy, but still somewhat uncomfortable. I threw up a couple of times during the five days. The worst part was constantly hobbling to the bathroom on my still painful leg because of the hydration and Lasix (diuretic) that are part of the BEP regimen. At that point the leg was so painful and I was so week that the bathroom was about as far as I could walk.
After the 5 days of chemotherapy I finally got to go home from the hospital. I gradually got stronger and the leg got less painful as I went through the 3 weeks where I only got a shot of Bleomycin each week.
The next cycle of chemotherapy was in the infusion center right at my doctor's office. This cycle was much better. They administered a different form of Kytrel through the IV, which they say lasts a full 24 hours. It worked great for me. There was no nausea, and I was comfortable through the whole week. For a couple of days after the chemotherapy I took anti-nausea pills any time I felt something coming on. By this time my leg allowed for easy trips to the bathroom. The infusion center was much more comfortable than the hospital room. There were other people there, the staff was very pleasant and competent, there was a VCR and comfortable chairs, and I got to go home when the infusion was done.
Lessons from this experience:
After that cycle I had my mediport put in. That operation and recovery was a snap. The port was sensitive for a little while, but it wasn't really a problem. I didn't use it until a week after the operation. The mediport sure beats getting an IV every day.
I've had one cycle with the mediport. The only other complications have been respiratory infections. I can't seem to avoid any colds that my kids bring home, and each cold seems to end in a respiratory infection that requires antibiotics. Of course, my energy is way below what it used to be. The tumors are about half their initial size; they are down to 7 cm. in their largest dimensions (still bulky). My HCG level is down from over 140,000 to 12.9. I don't have any other blood tumor markers. Over all, I'm doing well.
That is pretty much the whole medical story so far. The personal story has a couple more details. I haven't been able to work for about 4 months now. Fortunately, my company has disability insurance so my wife didn't have to go back to work. That would have been very difficult since our daughters are 1 and 4 years old and I can do very little without getting very tired.
My wife has been incredible through all this. She has done so much to make me more comfortable and to keep my spirits up. I've always known how incredibly lucky I am to be married to her, it has been especially important for the last few months. She has been my rock. My daughters have been a source of joy and have given me a lot of strength to fight. These factors way more than offset the colds they bring home and the energy parenting requires.
It is difficult for my wife and I to ask for help and to accept help. We are both very independent. With the demands on us we have made an effort to ask for help and to graciously accept what has been offered. Friends, neighbors, co-workers, church members, and family have all been incredibly generous with their time, prayers, and thoughtfulness. They have brought meals, watched our kids, helped with household emergencies (broken toilets, moving furniture, etc.), helped outfit our house for my needs, and prayed for us constantly. Their contributions have made it possible to carry on a fairly normal family life and to focus on getting better.
I'm still afraid of the RPLND and the recovery it requires. I look forward to going back to work, getting back to normal, and trying to be as generous as people have been to me (perhaps too high a goal). I'm halfway through.