I had been divorced for a year and a half. My ex didn’t want to be married any more. My children chose to stay with me. A true blessing.
My son was in his second year of college, my daughter about to graduate from high school. With them pretty settled, I began to think of the rest of MY life, and realized I was lonely.
I met a couple of fine ladies on the internet. We dated briefly, but nothing serious. We remain good friends, 9 years later.
On Valentine’s Day, 1997, I got my first message from my Angel. She had been divorced for 12 years, her two children were out of the nest, and had finally decided to start looking for someone to share her life with (someone to go to dinner and a movie occasionally, as she put it). Interesting, she was a professor at the same university that my son was attending (GO GATORS!), a little over an hour away. We hit it off right away.
During a routine checkup with my family doctor, he asked if I had any problems. I mentioned I had been having urgencies in urinating for some time. (My divorce and helping my children adjust had distracted me from MY problems). Although I was only 49, and my DREs had shown no problems, he decided to do “additional blood tests”.
He called me back a few days later and told me my PSA was over 100. “So, what’s a PSA?” was my response? Did it mean I had to take some medicine? He explained it could be caused by any number of things, from an infection, to ….cancer.
Well, it couldn’t be cancer. I’d been healthy as a horse my entire life. Couldn’t catch a cold if I tried. I could sleep in poison ivy. He prescribed antibiotics, and scheduled another PSA test two weeks later. It came back over 100 again.
He scheduled a biopsy. The results came back: although there as no definitive lump, I had cancer in both lobes. Sorry to say I don’t remember the details, such as my Gleason score. I was in shock. And totally ignorant of prostate cancer.
I knew I had to tell my Angel. We had only been dating two months. I called her, and told her I had to come see her. I had something important to tell her. It was a little over an hour drive to her house. On the way, I went over a hundred reasons why she needed to go her own way, why this was not her problem. I practiced my speech. And I delivered it calmly.
She looked at me and said, “This is just a bump in the road. We will get over it, and go on with our life together.”
When I got home, I spent hours into the night studying prostate cancer on the internet. One thing stood out: almost all men were diagnosed with PSAs below 10. Mine was over 10 times that. I was scared. VERY scared. I prayed to God. I didn’t beg, I didn’t bargain. I didn’t make promises. I only told God I was His, and for Him to do with me what He wished. I also wondered if I would live long enough to see my son graduate from college, to see my children married.
God laughed at me. Or maybe I should describe it as a big wide grin. He let me know in an instant that my time wasn’t done here on this earth. I had work to do. He had plans for me.
I began making plans to LIVE. I found that one of the best experts in the country was at Shands Hospital in Gainesville, Florida, Dr. Zev Wajsman. The city where my Angel lived, and my son was going to college. And I wanted the best. I called his office, and asked to make an appointment. I was told that the first opening was in September, 6 months away.
Too far away. I called my Angel and told her of the disappointment. She said she wanted to call a friend. Her friend was a famous radiologist at Shands. He and my Angel’s sister had been together for over 10 years, but had gone their separate ways a few years earlier. He told her, “I just worked with Dr. Wajsman on a case recently. Let me call him.”
He called my Angel back ten minutes later and said, “Tell Gene he has an appointment TOMORROW MORNING with Dr. Wajsman at 9:30. He won’t get another chance. Dr. Wajsman is leaving the country for a conference and won’t return for two weeks.”
The next day was Good Friday. What an appropriate name. Dr. Wajsman was great. He ordered a bone scan and CAT scan for that afternoon at Shands hospital. The folks there were terrific. Apologizing for my waits, for any discomfort I was having. Heck, I knew these folks wanted to get home for the holiday to their families. I felt blessed they were even there to help me. Didn’t know if their behavior was due to Dr. Wajsman, my Angel’s radiologist friend, or simply because they cared. Actually, it was all of those things.
I didn’t want to wait two weeks until Dr. Wajsman returned for the results. I already had an appointment scheduled with the urologist who did my biopsy for the following Tuesday. I called on Monday and asked his office to get the results from Shands in time for my appointment. It was close, but Shands got them there.
My Angel drove the hour to be with me. The urologist looked over the reports, and said, “Well, nothing shows on any of the scans…” My heart lifted! “…but with a PSA of over 100, it’s a given the cancer has spread.”
My heart sank. He proceeded to explain that any treatment would just be needless pain and suffering. Not worth the pain and expense. I heard little of it.
As we walked out, my mind was numb. But my Angel said, “You’re not coming back here any more. That guy needs to stick to vasectomies. You’re going back to Shands!”
How right she was. Two weeks later, on a Friday, Dr. Wajsman returned, and I had my appointment. He explained that usually, a decision on what treatment to follow was a difficult one. “The good news is, you don’t have that problem!” he said. Radical prostatectomy. Followed by external beam radiation. Followed by hormone treatment. “When do you want to schedule your surgery?” Soon. “How about Monday?”
Wow. Three days away. Dr. Wajsman said the surgery would take about 3 hours, but he would look in my bladder, and the surgery would be longer if he “found something he didn’t like.” I knew what that meant.
Anyway, the surgery took place, and I began to awaken in the recovery room. I dreamed I heard MY Angel’s voice, but, that couldn’t be. I was the recovery room, after all! But, turns out it WAS her. She had gone to her radiologist friend and said, “You need to get me into the recovery room.” He told her to go into his closet and get a gown. Her friend is about 6’2” and my angel is 5’6”, so the gown was a little big on her. He took her into the recovery room, sat her next to me, didn’t say a word to anyone, but they knew who brought her in, recognized the name on the gown, and everyone knew not to bother her.
When I woke, and realized it WAS her, I kept asking her what time it was. I had a hard time getting her to answer, as she didn’t understand why I was asking. But when she finally told me the time, I knew that the doctor didn’t have time to do anything other than remove my prostate. I still had my bladder. I was relieved.
I found out later he did remove the neck of my bladder. He wanted good margins.
For hours my Angel kept yelling at me. “BREATHE!!!” She knew, since the oxygen monitor kept going off, that if I didn’t breathe deeply, they would put the breathing tube back down my throat. She was successful.
The day after my surgery the head of the University of Florida anesthesiology department (Shands is a teaching hospital) brought in a student to administer a test to me. I had taken the same test the previous Friday. I had volunteered to be part of a study of how anesthesia affected thinking. (I’d take the test again a month after surgery.) After the test was over, the professor frowned and said, “You just screwed up my averages.” I laughed. She laughed with me.
The next day my Angel took me to her house. She had taken time off her job at the university to nurse me back to health. I thought she’d baby me, but she immediately dragged me out of the house to walk. I didn’t like dragging that catheter and bag around the neighborhood. My daughter sewed me a pretty bag I could sling over my shoulder to disguise it.
I had problems with passing clots. I really had to work them through the tube. That night I was plugged solid, and had to go to the emergency room. The doctor there connected a syringe the size of a baby bottle to my catheter and forced saline solution back into my bladder. What fun that was. But it did manage to dislodge the clot. I would fight with clots for over a week. I had the catheter in for over two weeks. When it was removed, as I clung to the ceiling, the nurse who pulled it out remarked, “WOW! I’ve never removed one that large.” But boy, I felt it! The doctor told me it was larger due to his removing my bladder neck. Afterwards I realized just how serious my clotting was, since my oversized catheter was blocked countless times.
For those of you about to deal with a catheter post-op, some suggestions. Get some cotton “shop” towels. Plenty of them. They were unbelievably handy for controlling leakage from around the catheter, especially as I changed positions during the night, as I did often. A 5 gallon bucket was real helpful for holding the bag at night and for holding used towels. My future father-in-law cut 4 2X4s to put under the head of my bed. They proved invaluable for helping the flow of the catheter, which helped me sleep for longer spells. The designer bag cover my daughter made was helpful for my modesty during my walks my Angel forced me to take outside. Because of my clotting problems, my “plumbing” needed a lot of maintenance.
Well, that’s enough for now. You’ve suffered through enough. More later. God bless you all.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Bone Scan and CT negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 16/1995
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007