| Voices in PSA Rising Magazine | ||
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| What
Makes a Man By Maynard 'Berky' Berkowitz |
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 am a sixty-nine year old white male living in Minden,
Nevada, in the Carson Valley. Out my living room window I have impressive
views of the Sierra Nevada Mountains. Minden is about fifteen miles
south of Carson City and about nine miles as the crow flies east of
south Lake Tahoe, where all the casinos are.
There they put me into the capable hands of a cardiologist. He kept me in the hospital for about five days, running every test that he could think of for heart problems. EKG's, Echo Cardiograms, Abdominal Ultrasounds, Doppler Ultrasounds, blood workups, 24-hour heart monitoring, and much more. In the end, he released me, saying, There is nothing wrong with your heart. I felt better, knowing that my heart was OK, but I still had chest pains -- and they were real. I suppressed them thinking, maybe it's all in my head. Now I know better, but it took me another two months to pursue it any further. In March '98, I again showed up at the Urgent Care center (a different one, and a different doctor). This doctor did a complete physical and lots of tests, including a DRE, and ordered a PSA test. After several hours, I returned home thinking, well, it's probably still in my head. Several hours later, the doctor called and told my wife I had the big C. I wasn't in the house at the time. The doctor was very kind and asked my wife to come down to the center, and talk. The doctor spent about one hour talking to my wife, telling her it wasn't the end of the world. When my wife got back, she had with her an order for a bonescan, and the name of a urologist she wanted me to see, and a face full of tears. Incidentally, the doctor was a female. Much more supportive than a male, and she probably knew much more than she told my wife. When my wife told me about what the doctor said, I took it all in stride. I had read some about Prostate Cancer, and it was supposed to be slow growing. Many people never even know they have it. I still had lots of testosterone running around my body, and that is what makes a MAN. Without Any Decimal Points The next day, I went for a bone scan, and you know how they are in the lab, they never tell you anything. The day after that, I had an appointment with the urologist. He told me about the bone scan and the results of the PSA. My PSA was 1614 (that is without any decimal points). The bone scan showed many areas of increased activity, from my skull down to my knees and virtually every bone in between including the ribs. Now I know where the chest pains came from. He sent me home with a kit for the following morning that included antibiotics and the mandatory enema. He scheduled me for the biopsy the following day. I was quite willing to have it done right then and there; but the doctor said, although they could give me the enema, they couldn't get the antibiotics to work that fast, so I'd just have to wait till the next day. Didn't get much sleep that night, but in the A.M., I was roaring to go. Well, the biopsy was much less than I had expected. The doctor told me exactly what he was doing, and obviously knew what he was doing. It was ultrasonicly guided to just the right spots. He took 3 cores on each side, and except for a slight sting each time the needle struck, I didn't have any pain. There was virtually no bleeding either in my stool, or in my urine. He then gave me a Lupron injection, and gave me a prescription for Flutamide, and an appointment for two or three days later to review the results of the biopsy. Just like the good little boy I'm supposed to be (68 at that time) and true to the obedience demanded by my wife, I showed up for the appointment. It was at that time that he said it was advanced prostate cancer -- and said the words that I find very hard to say: "THERE IS NO CURE FOR ADVANCED PROSTATE CANCER." Every time I see this statement in print, I cry. The results of the biopsy plus the results of the bone scan assured him that the cancer had already metastasized to the bones. We had a long discussion, and he told me that surgery was not an option nor was radiation nor seed implants. He also explained how the cancer feeds on testosterone, and what the treatment was, and how it would affect the production of testosterone and what the side effects were. And he gave me the results of the biopsy: Gleason score was 4+4 and 4+5 on the right, and 4+4 and 3+5 on the left. These are not good numbers. Although most Prostate Cancers are slow growing, mine was not. The last PSA before diagnosis was taken in September 1996, and it showed a PSA of 3.4. Eighteen months later, it was 1614. This indicates a PSA doubling time of about 7 weeks. Usually, PSA doubling time is measured in years. Radiation and After-Effects Within one month, my bones were really aching. Along with the chest pains, I had knee pain, hip pain, shoulder pain, back pain, etc. He recommended that I see a radiation oncologist and have radiation for the pain, not to the prostate area, but over virtually all of my body from my neck down to my knees. Within five days of starting the radiation therapy, I could not walk without crutches. The radiation was not confined to the prostate area, but included the neck, chest, spine, pelvis, and knees. More than for men who have the prostate radiated, it was very hard on me. I had a lump in my throat that felt like a golf ball, which made it almost impossible to swallow. Even water had a hard time going down. I lost 40 pounds (20% of my body weight) in five weeks or less. Since the radiation was over such a very large area of my body, it depressed the bone marrow production of blood. I became very anemic. My wife said that I looked like a ghost. I'm not sure that my bone marrow has recovered from that assault even today. That was a low point in my life. I'll never undergo that kind of treatment again, I'd rather die first. In addition, I don't think it did any good at all. In spite of the radiation therapy, which was supposed to reduce the pain, my pain kept increasing. I was popping Percodan like they were jelly beans. I even had Fentanyl, which is supposed to be more powerful than morphine. Nothing helped. Finally, in early July, I fell coming out of the shower. My hip pain was very bad. My wife talked me into going back to the hospital for X-rays. This time she drove me to Carson City, and at least I didn't have to go in the ambulance. There they took X-rays, and found that I had broken both hips. This time, I managed to get the X-ray technician to give out some information. I told him I would like to sit at the edge of the gurney, and dangle my feet over the side. He answered: "from what I saw on the X-rays, I don't think you should do that". This was a Saturday. These things always happen on the weekend. They got hold of an orthopedic surgeon. He got a team together and on Sunday, he operated on my left hip. Completely replaced it. Then three days later, he worked on my right hip. This wasn't quite as bad, and only required a plate and pin. Thursday AM - less than 18 hours after the second surgery - they got me up out of bed. The pain was tremendous. When the doctor came in that afternoon, I had some choice words for him - I'm not quite sure, but I think I called him an asshole. After one week in physical therapy, I was again back on my feet. With crutches. I have been improving ever since. Before I broke my hips, I considered it a good day if I could walk across the street even though only with crutches. Now, I am walking without crutches or even a cane. I have been able to walk over a mile. In retrospect, breaking my hips was the best thing that happened to me in 1998. Where I Am Now Since my diagnosis, I have been on Androgen Deprivation Therapy (chemical castration). My PSA has dropped from 1614 down to 7.2 on my last PSA. In another month or two I will have another bone scan to see how much that has improved. I have been on pills and potions to help build up my bones. The chest pain, hip pain, back pain, etc. have virtually disappeared. I still have a little knee pain, especially after a walk, but it is not even enough to take pain pills. Even now, I do a lot of crying, watching my wife do those things I used to be able to do. Mowing the lawn, taking out the garbage, picking up something I dropped. Perhaps just a little explanation is in order. I cannot bend down because of the danger of knocking my hip out of place. Cannot bend more than 90 degrees. Cannot put on my left sock or pants, or even trim my toenails. I have to sleep with a pillow between my legs to keep my legs apart. Just last week, I found out that I was depressed. Went to the doctor and she (Internal Medicine) said I have every right to be depressed. However, she did prescribe some pills to help lift me up. Incidentally, she is a great looking girl, and just looking at her did wonders for my depression. But still, I go to bed at night saying "I hope I don't wake up in the morning." I still hope that some day, I will wake up and find out that this whole thing was just a bad dream. But some things are permanent. If they found a cure for Prostate Cancer tomorrow, I would still have a fake hip and all the lifetime restrictions that imposes. Perhaps after a week or two of being treated for depression, I may have to re-write this paragraph. I did get a copy of the pathology report on the amputated part of my hip, and it said "decalcified bone fragments, highly suggestive of metastasized prostate cancer." Androgen Deprivation Therapy has produced many changes in me. Tender nipples, enlarged breasts, the crying or mood changes, hot flashes, night sweats, loss of libido ... and I'm tired, very tired. I am on estrogen and progesterone to try to make up for the loss of testosterone. It is sure surprising how much your life changes just because of those words "Advanced Prostate Cancer". I am not sure when this story will end, but I think I know how it will end. I'd like to think I have a few more years left in me. Time will tell. Maynard Berky Berkowitz © 1999 All Rights Reserved. |
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| Berky (known as Berky the Warrior) participated in clinical trials at UCFS and survived a second hip replacement after his thigh bone shattered. Berky helped thousands of men and women through prostate cancer awareness talks he gave at Rotary clubs and by distributing Molly Sower's booklet Choices and internet support via Don Cooley's lists, PPML and The Circle. Berky died on January 18, 2004. | ||
PSA Rising prostate cancer survivor activist news http://www.psa-rising.com © 1997-2004  |
