September 30, 2000

Rick's TC Story

My name is Rick, and at age 38 I was diagnosed with stage IIC seminoma, an 8 cm bulky retroperitoneal tumor which blocked my ureter and put me into total renal failure. As it turns out, I only had one kidney, and so when that one shut down, I was in real trouble. Here's my story:

Crisis & Diagnosis

In the summer of 1997, I had been having chronic back pain, and some gastrointestinal problems. I was also urinating more frequently (maybe from an enlarged prostate, I wondered?). When the back pain became awful, I went to the doctor and described my symptoms and, after an examination, he gave me a sheet of back exercises and told me to be patient. The pain wore on over the next 6 weeks. I was reluctant to return because the doc I saw had left me feeling like I was a hypochondriac.

On September 22, 1997, when the pain was near unbearable, and my legs were swelling, I returned to my health center, and this time I was able to see my regular physician. He also told me to "keep working on those back exercises!". As a precaution, he said he would also order some bloodwork. It was a decision that probably saved my life.

Late that afternoon, I received a call from my doc's officemate. She had the voice of someone who was trying hard not to sound panicked. She told me that unless there was a lab error, something was terribly wrong with my kidneys. She said my creatinine level should have been between .5 and 1.5, and was at 17. People are not walking around, alive, with those kind of numbers, she explained. I needed to get to the emergency room immediately. My wife should drive.

At the ER, the lab work was repeated, and I was shocked to learn that it was not an error. A radiologist, a nephrologist, and a radiology tech. quickly assembled to do an emergency ultrasound. Beforehand, the nephrologist explained that I was, in all likelihood, in end-stage kidney disease, and would need to go on a transplant list. He needed to do lab work on urine, but by then I was unable to urinate. He said he expected to find two shriveled raisins where my kidneys once were.

On the ultrasound table, I knew something was wrong when folks began searching for my left kidney in places where, even from my crude knowledge of 10th grade biology, I knew kidneys could not be found. The good news was that I did not have end-stage kidney disease. The bad news was that, instead of having sprained back muscles, I was in renal failure, because:
1) I was not born with a left kidney. Who knew?
2) I did have a right kidney, but that was in total renal failure.
3) The reason why it failed was because I had a large, softball size mass, which had totally cut off my ureter (and was also compressing on my spine, causing the back pain.)
They took my wife aside, and told her:
4) The mass was probably cancer.
To go from having simple back pain to having an advanced metastasized cancer (and renal failure, severe anemia, congestive heart failure, etc.) in the space of 4 hours was way too much for us to handle. For days, even weeks, we walked about in a daze......

Very early the next morning, I had emergency surgery. A stent was placed in my ureter, which allowed me to pass urine. Slowly, my kidney came back to life and my creatinine levels dropped.

Treatment and Recovery

I spent most of the next week in the hospital, recovering and undergoing biopsies. My docs could not decide if I had lymphoma, or a germ cell tumor. I had had no lump on my testis. After a wait of about 10 days, Sloan-Kettering pronounced that I had seminoma, and my oncologist prepared to start me on chemo. My stent then blocked, and I went into renal failure again, and had another cystoscopy, and an orchiectomy. Then it was onto chemo, 3x BEP, which I tolerated poorly, getting most of the regular menu of side effects, needing a transfusion, getting an allergic reaction to bleo. The combination of chemo. and the anemia from renal failure left me incredibly weak and helpless. Without my wife's constant support, I never could have done it.

In time, we made it through. The next problem was how to unblock my ureter, which was encrusted in scar tissue (seminoma cells which had been "turned to sheetrock" by chemo.) I spent about six months after chemo hoping the tissue would shrink, and getting regular stent changes. Finally, I had reconstructive surgery on my ureter, and I'm now stent-free.

Three Years Later

During treatment, I never could imagine having a healthy, rigorous life again. I felt betrayed by my body, and no confidence that it could bring me back to a "normal" lifestyle. Today is three years from my first hospitalization. I cycled 50 miles last weekend, and I can do anything I want to do.

The emotional recovery from cancer, for my wife and for me, was as great as the physical one. It took a long time to recover from the emotional trauma of having one's life suddenly upturned. Eventually we became re-absorbed into "normal" life, and moved past the daily fear of recurrence. Our focus now is to hold fast the major life lessons that many survivors cling to: Don't waste time. Don't take your body for granted. Cherish life, and your loved ones. Live every year as if it is your last.

Best of luck in your journey.....

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