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A Phoenix5 First-Person Story



by Kathy

With the first high PSA I panicked.

With the second I got to work. I researched, read and learned everything I could surreal perspective of twisting highway about this disease. Then I informed my husband of my findings, because for some reason, but not unlike other men, he could not do it himself. He was very willing to read any pages I marked in a book, or downloaded offline.

With the biopsy and diagnosis I cried alone in the dark or in the shower so he wouldn't hear. I acted upbeat and positive whenever he was around. I understood the power of positive thinking, and did not want him to succumb to any negative thoughts. He never cried a tear in front of me, and always acted like he was there to comfort and support me through this time. We both at least acted like we were the strong one. I knew inside he was the stronger one. He always seemed to have a positive attitude. To this day, I don't know exactly what he was feeling during that time.

With the CAT scan and bone scan, I fought hard not to be sick. I was present in the room during the bone scan and I watched on the monitor. As he lay there with the machine inching it's way over him, he looked so vulnerable for the first time. I had never seen him sick, or even in pain. It was a reality check for me at that moment. Everything came crashing in. I strained to see what they might be looking for. Could I see anything? What was I even looking for. I didn't know, but I tried anyway. I could see a large glow around the pelvic area. My stomach did a flip flop...I felt myself getting tense. I could hardly stand one more minute of looking at his skeletal structure as the pictures came up on the screen. The tech told him to empty his bladder because the glow was the nuclear material in the bladder. By that moment, I had to leave. I thought I was going to vomit. I put some water on my face, and when I came out of the ladies room, he was there waiting for me, smiling, positive and joking as always. He did tell me I didn't look so good. I made some excuse, and we left. My stomach stayed about the same until we got the results.

With the appointment to get the results, I was nauseous. The doctor was late, and it seemed like an eternity for him to come into the room. They wanted to reschedule, but we wanted to wait. He entered the room, and I looked for some facial expression or sign of what he was going to say. He glanced through the reports without looking up. My stomach rolled over again and again. I could feel the tension building in my body. He finally looked up and told us the scans were negative. I had to excuse myself again because I felt sick at that moment — happy but sick.

With the decision making process, I studied some more. I made phone calls to doctors offices, got online and talked to my new friends in the chat room and reported all the info to my husband. I talked him into a second and third opinion. I called all over the country to find an experienced doctor. I made appointments with two in our area who I traced back all the way from studying with those at John's Hopkins. I found that about 30 miles from here there was a hospital named on the best hospital list in the July issue of Newsweek. Best for urology and prostate cancer surgery. My husband was very willing to wait one month for an appointment with the head of urology there. He was willing to listen to whatever I had to say, but I had to do the groundwork, footwork and studying. This became apparent to me early on and I didn't mind doing this for him, someone had to, and for some reason he couldn't.

With the news from the new doctor I had hope. He didn't believe that our case (notice that I said our case, because this is happening to both of us) was as hopeless as the first doctor did. Things didn't match up. He could feel something that seemed very large, but why couldn't he see it on the scan. His PSA was high, but he was convinced that something else was going on. There could be other reasons for it being high and the first two doctors did not try any antibiotics to lower it. He had symptoms of BPH, and bladder retention.

With the decision being made, I had some relief. I planned a trip for a long weekend for just the two of us. It was the best thing I ever did. We rested, and spent quality time together. We never mentioned what was coming up next.

With the process before surgery, I became frustrated. He was supposed to give his own blood for surgery but with 9/11, the Red Cross was too busy to have any time for him. This was the end of September and we had to beg for two units to be drawn. I got on the phone and fought with them until they gave us two appointments. One on Friday, the next on Monday, because by this time his surgery was only a week away. We were running out of time. If they didn't get the blood one week before surgery, he wouldn't be able to give it. It's too bad I had to get angry before getting any results with them. There is enough range of emotions involved, I really didn't need to add anger to the mix.

With the surgery, I became the strong one. He needed me to be calm and strong that day, and so I was. Right up to the point they rolled him into surgery, that is, and then I went back into worry mode. That means the old stomach rolling, and tension so bad I thought I could feel every muscle in my body. My head hurt. I couldn't sit without my let shaking. I tried to eat since Mom and Dad insisted. Shortly after I got sick. It started late, and it ended late. Five and one half hours of just sitting, waiting, worrying, trembling, vomiting.

With the doctor's debriefing, I was relieved. Contained, they thought, nerve sparing was successful. Not as bad as the PSA and DRE would have suggested. Tests would show for sure. The doctor seemed relieved, elated, and acted as though he wanted to sit and chat with us forever. He just seemed so pleased with the outcome. Thank you God.

With his homecoming I was a brave nurse. Why did I think I could take care of him and the catheter, and whatever else was to come. He was only in the hospital for 48 hrs. He was exhausted and in pain from the 40 minute ride home. I emptied, cleaned and changed the catheter for the first 24 hrs. I taught him to do everything the next day. We both were taught at the hospital, but he didn't remember much of what went on during his short stay. I put everything I had learned into play to make him more comfortable.

With the next PSA, back to panic and worry mode. I held my breath for what seemed to be an eternity. The words from the doctor: UNDETECTABLE.

With his depression I became a psychologist. I learned what to do, what to say, and how to get him back out of this quite short lived, (thank God) mode. I cajoled, I taught, I fought and I finally pushed him until he finally broke the silence and began to express what he was feeling. This came about 3½ months after surgery. Still tired and expecting too much from himself. I had to drag out all the downloads and books again and mark the appropriate pages for this stage.

With his impotence I became the patient wife, friend and lover. Always encouraging and marking pages and learning some more, and calling the doctor when he seemed to digress again. He needed to hear from someone else that he was expecting too much too early.

With his first erection I became a cheerleader. It took practice to get it all working at the same time: the pump, the Viagra (new dosage) and the libido. He mentioned to me later that he could not believe how hard I worked at trying to help him get an erection. Success breeds success, so after that things seem to be moving forward.

With waiting for the 6 month PSA, I am becoming worried again. This is where we are now, and I think this is where we will stay for a very long time. But he's alive and we are experiencing happy times again. Spending more time together. Even our walks are so enjoyable. Everything is!

With his living, I am alive, grateful and just a wife, doing what all good wives would do: being a partner in this war against PCa and doing whatever it takes to keep him alive and happy.

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[Images are for illustration only and do not represent those involved.]

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This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <>. P5's policy regarding privacy and right to reprint are at <>.