The C Word (A Trek Across Prostate Cancer) Written by Bill Williamson

Transcription

1 The C Word (A Trek Across Prostate Cancer) Written by Bill Williamson You are two very nice people with a very serious problem, my Veteran s Administration doctor said. The biopsy confirms you have cancer. My wife and I sat there stunned. Shouldn t there have been a warm-up before dropping those words on us? Shouldn t something have been said that could have prepared us for this news? Maybe so, but the truth was, sugar coating this diagnosis wouldn t have changed a thing. It is serious and both of us are greatly impacted. A biopsy had been taken because of an elevated PSA and swelling in my Prostate. I had been six years getting to this point and it was clear to me now that I had made some real mistakes along the way. Let s go back to the beginning of this Trek Across Prostate Cancer. The year was 2000, and Maureen and I had just relocated to Boulder City, Nevada from the country of Israel. We were married in Bethlehem only months earlier and felt the Lord s leading to come and help out with a storefront Church where a friend of mine was the pastor. Neither Maureen, nor I, had health insurance, but I was a veteran that had served in the US Army for three years. That gave me the right to apply for healthcare from the VA. It did not give me a guarantee of approval, only the right to apply. But the approval letter did come. I scheduled a routine checkup. I had not had one in many years. Blood was drawn and all the normal tests were done. Everything looked just fine except the PSA. It was 4.6 and of no real concern to my newly appointed VA doctor. She simply stated the normal range was between 1.0 and 4.0, and that we would have to check it again in a few months to see if there were any movement in the numbers. I really didn t know anything about the Prostate, nor the PSA, and ignorance seemed OK to me at that time. Months went by and the PSA was tested again. This time it was nearly 6. Still a low number, I thought, not so far above the norm of 4.0. The doctor, however, was very concerned that it had changed that much in only a few months. She recommended a biopsy be done to check for cancer in my Prostate Gland.

2 I just did not share her concern, and I had a lot of peace about letting it ride. I did pray about the situation, as I was accustomed to praying about everything significant in our lives. Maybe I really didn t think this was so significant though. And just maybe I didn t really give the appropriate prayer emphasis. Another thing happened that helped me conclude there was no rush to deal with this issue. A friend suggested that a biopsy could spread the cancer if it were really there. I didn t think there was cancer and really didn t want to look into it any further, so this was a great excuse. I declined the biopsy offer. A few months later Maureen and I relocated out of the country to the island nation of Cyprus in the Mediterranean about one hundred miles from Israel. I had no further communication with the VA in Henderson. We spent nearly a year and a half in Cyprus operating our home as rest and recuperation retreat for Christian workers serving in Israel. Our lives were full, active, and adventurous trying to make ends meet while meeting the needs of more than fifty people who came to our home during that time. No thought was given to my Prostate, nor my PSA. We left Cyprus and relocated to the state of Florida, again at the direction of the Lord. Once back on American soil healthcare was once again in my thoughts. I contacted the VA in Tampa, Florida both by phone and letter. I never received a response to either. I let it drop and went on with life, and served in our church. Two and a half years passed and our work at the church in Florica came to a close and we felt a strong leading to relocate to Payson, Arizona. Once our home was sold, (our first purchased home together), we headed west in our small Penske truck with all our belongings. Less than a year into our time in Payson I developed a minor intestinal discomfort that lasted for a couple of days. Members of our church came to our four-plex apartment and prayed for me. At the close of one prayer, a gentleman asked me if I were a veteran when he learned we had no health insurance. I replied, Yes, I was in the Army. He suggested I call the VA Hospital in Phoenix and get enrolled. I liked his suggestion and called the next day. I was surprised when the person on the phone asked me a few questions and then responded by stating, You are now covered. So easy, I couldn t believe it. After no one would even respond to my queries in Florida, it had only taken one brief phone call here in Arizona and I was again a VA patient. I called the VA physician that had an office in Payson, to schedule a general check up. I was soon watching as blood was once again being drawn from my arm for the routine tests. The results would be back in about a week. I was feeling fine after my two-day intestinal upset and life seemed great. We were very active in our new church and were making lots of new friends. I was running the Missions program for the church, and Maureen was involved in many functions as well. The year was 2006 and we were coming up on our one year anniversary of our move to Payson. It had been a good year and we loved living in the Payson Rim Country. The mountains were beautiful, the weather was wonderful and we were in the midst of building our new home in Deer Creek just south of town. The blood test results were back and I checked in at Doc Ivey s and sat in the waiting room. Moments later we were inside an exam room, and in no time Doc Ivey entered the room. Doc was an interesting man who had come to realize the importance of Jesus Christ in his

3 life. He wasted no time letting us know that he was a Born Again Christian, and had at one time been heavily dependent upon alcohol. Doc was cut from the stock of the old American Medical Doctor who surely must have visited many homes, even in a horse drawn wagon if this were in the right time frame. Of course it wasn t. He would have fit in really well back in those days. Doc had a wonderful bedside manner and we became fast friends with him and his wife, Sandy, who was his nurse. The news wasn t good. The PSA was very high at This one got my attention. Somehow I could downplay the 5.9 PSA, but this one was outrageously high. Doc asked me questions about restricted urine flow, getting up for toilet trips more than twice a night, or inability to hold urine flow. My answers were all negative. I had never even had one symptom of Prostate issues, and still haven t to this day. Only one thing was to be done. Doc scheduled me with a Urologist at the VA Hospital in Phoenix. A biopsy would have to be done this time. My appointment came and the white-haired Urologist at the VA seemed distant and overburdened with too many years of his routine. His bedside manner wasn t bad. There just wasn t any at all. He instructed me to drop my trousers and bend over for the infamous digital exam. Now this exam isn t really so bad, but the idea of it is always less than fun. There is something very undignified about bending over an exam table while someone slaps a rubber glove on and extends a finger into an area where none should ever go. It is an experience that can never be finished fast enough. Your Prostate is swollen, he said. I m scheduling you for a biopsy. I don t think eye contact was made, nor was a smile anywhere near those old tired lips. Surely retirement couldn t be far away for this doctor who had seen thousands of war-torn veterans parade through his exam room. It was a couple of weeks until my biopsy appointment. The ride back to Payson was pleasant along one of Arizona s most scenic drives. Payson lies in the hills North and a little East of Phoenix about two hours. The drive climbs about 4000 feet in elevation through a myriad of desert scenes including, Saguaro Cactus forests and mountain passes. I wouldn t say that we spent a lot of time worrying about the biopsy. Maureen and I are not prone to worry. The truth is, we had put all details of our life and welfare into the hands of our Jesus many years earlier. We hoped for a good report in the coming weeks, but did not dwell on any what if situations. The day came and we went through the customary struggle of finding parking at the Phoenix VA Hospital at mid morning, but were soon waiting for my name to be called in the Surgery department. The biopsy of the Prostate would be by needle, with access up through the roof of the rectum. I was told it would be uncomfortable, but painless. A technician stepped into the waiting room and called my name. I jumped to my feet and soon I was being prepped and medicated for the procedure. The biopsy would consist of eight needle samples, four from each side of the Prostate. Painless is not the word I would use to describe the impact of the first needle as it thumped against my Prostate. The pain was very intense and I surely jumped vertical on the exam table. Then came the second, the third, and so on. Eight times the thumps pounded my Prostate and I was praying each time, Oh God, get me through this. I was counting and finally it was number eight. Thank you, Lord, I muttered under my breath. The pain was so intense I felt nauseous and wondered if I were going to upchuck right there

4 on the table. My face must have been void of blood and white to look at, as the technician stated, You better lie there for a few minutes. I didn t feel like lying there, but neither did I want to stand. I was sure I would vomit if I attempted it. Finally the technician took my arm and asked if I could stand. Sure, I said, knowing I was only hoping I could do so. I was able to make my way down the narrow hallway wobbling from side to side focusing on the exit sign above the door. I made it through the door and Maureen was waiting for me. She gasped when she saw me, white as snow, and not to stable. She took my arm and we moved ever so slowly toward the elevator. The two-hour drive home was less than comfortable and I was sure I felt every pebble in the pavement as the car rolled over it, but when the pain finally left, I was the happiest person in the hill country around Payson, I m sure. The days passed quickly and soon we were touring through the beautiful landscape heading back to Phoenix to hear the biopsy results. We made our way from the now familiar hallways and elevators to the Urology Department and took seats in the waiting room. Billy Williamson, my name was called. We were escorted into the small exam room that was equipped with an exam table, two chairs for the patient and a family member, and a computer desk with the ever- present VA computer. VA doctors are required to document everything as they go through the exam and spend most of their time facing the computer rather than the patient. The veteran doctor turned in his swivel chair and looked at us without expression. You are two very nice people, with a very serious problem. He went on to explain the level of cancer that was found. We took four biopsy samples from each side of your Prostate. The four on left had cancer in them, and the four on the right did not. The cancer is a low level cancer with a Gleason Score of six. Scores seven and above are considered most serious. Somehow the Gleason Score of six did not comfort us. We both felt like we had walked into a door just as someone was slamming it shut. Most of what this old, tired doctor was saying meant very little to us. The CANCER word just kept shouting at us. The doctor laid out normal treatment options for us. Surgery generally was not an option because the PSA was more than 10, and there is too much risk that the cancer had moved out of the Prostate into the bones, where it normally travels to when it chooses to leave the Prostate. Radiation would be the best course of action, followed by Hormone Therapy, but before any treatment plan was made a Whole Body Bone Scan would be ordered to determine if the cancer had left the Prostate and matastisized into the bones. Soon the results of the Bone Scan were known and there was no detectable cancer in any bones. Good news! I was determined I was not going to rush into treatment of any kind without adequate prayer, and I informed my Urologist so. Now! Now is the time for treatment, this mender of broken soldiers reiterated with his first visible emotion. I insisted, so he said that I must at least get a new PSA blood test in thirty days. I did get another PSA, and it had gone up. I continued doing blood work for PSA every thirty days, and continued to pray on for days, weeks, and even months. The PSA rose into the thirties, the forties, and finally after six full months, the reading reached 58.6.

5 Was I nervous as the PSA rose dramatically? Surprisingly, I was not. I was at peace and knew I was in the hands of the Living God, my Lord, Jesus. I knew that I was safe to wait until he directed me into treatment. Something changed though when I saw the number was I knew in my spirit it was time to treat this disease. It was now July 2007 and life as I knew it was about to change. I made an appointment with my Urologist and he was pleased that I had finally come to my senses and was agreeing to treatment. Arrangements were made for appointment with a Radiation Oncologist in Payson and I began seven weeks of Direct External Beam Radiation to my Prostate Gland, five days a week. The radiation was not an unpleasant experience. I was tattooed with small blue ink spots at various locations to establish set points for radiation equipment. These points ensure the equipment is set in the same place for each subsequent treatment. I suffered no real detriment from the treatments except a rash for a week, and a few days of urine flow restriction. Months later I learned that my Thyroid had been adversely affected by the radiation and I was started on replacement medication that I would be on the rest of my life. Another blood test for PSA was done immediately after completion of the radiation. The resulting PSA was <0.1, which means, less than 0.1, and is the symbol for undetectable. Good news, the cancer was effectively dealt with for the moment. The Oncologist agreed with the Urologist that Hormone Therapy would be required to maintain a proper PSA level and it should be implemented right away. Hormone Therapy has many adverse effects. Insomnia, weight gains, loss of sex drive, hot flashes, pimple-like eruptions in isolated areas on the skin, and loss of body hair. There are more, but these are the ones that affected me most. In the beginning of my Hormone Therapy I was injected just under the skin of my belly with a pellet containing a time release agent to reduce the production of Testosterone, which the Prostate Cancer feeds off of. Of course, less Testosterone means less cancer. Easy choice. My Hormone Therapy would be Pulse Therapy which simply means that I would be on Hormone Therapy until the PSA reached the desired <0.1 level and then it would be stopped. I would remain off the therapy until the PSA once again rose to a detectable level, generally about a year. Then after another year of Therapy the PSA would reach the <0.1 level again. On and on it would go for years, presumably the rest of my life. I want to shift gears here and share what limits all of these cancer treatments impose upon a man with Prostate Cancer. One that would be major to most men is the loss of sex drive. Motivation for sex simply goes away when Testosterone is removed from the male body. It is a mental affliction that causes the most grief as the physical aspect causes no discomfort. The peace that my Lord Jesus gave me through all of this has kept that mental affliction away from me. In fact, I wrote another story entitled, The Eunuch, which can be found on the same website as this story, and explains how I feel about this topic. Suffice here to say, loss of sex drive does not prevent a loving and caring relationship. Weight gain comes upon a person quite fast and unexpected. I am a person who really never had a weight problem and didn t think I ever would. My weight surged about fifteen pounds in the first few months of Hormone Therapy before I realized it was going to be a problem if I didn t do something about it. I acted immediately.

6 During my first year of Hormone Therapy, and while overweight, I trained for a hike across the Grand Canyon some 24.9 miles one way. I hiked more than three hundred miles over steep, rugged, mountainous terrain in preparation for the Grand Canyon hike in the months leading up to it. Even with all the hiking, my weight was at 174 pounds when I crossed the Grand Canyon in nine hours and forty minutes from the North Rim to the South Rim. My normal weight now is right on target at 157 pounds. I am 5 feet, 9 inches tall. The hike is evidence there are no physical body restraints from radiation or Hormone Therapy. Of course I had no symptoms, no serious adverse effects, nor body dysfunctions prior to, or after my therapy. That is, except sex drive loss. So, I am not comparing myself to others with more serious issues. I continued in the Pulse Hormone Therapy for six years until I was at the end of a treatment cycle and due to be off the therapy for a time. All I needed to make that transition was an appointment with my Urologist at the Phoenix VA. There had been a scandal in the national media about the treatment of veterans at the Phoenix VA and one of the major complaints was the inability of veterans to get appointments. I had no idea what was going on behind the scenes in Phoenix, nor at the National level in the Veteran s Administration, but I was apparently caught right in the middle of this issue. I tried for nine months to obtain an appointment to no avail. I wasn t desperate because no action was needed. My treatment simply needed to end for a time, and I could do that myself. During this time Doctor Ivey retired and my medical files were turned over to the new VA Doctor for Payson, Michael Lowe. Doc Lowe was a personable and friendly doctor and well qualified for the job of taking care of us veterans. The year 2014 rolled around and the VA scandal still raged in the media, and I still had no Urology appointment. I began the process of getting approval for medical treatment outside the VA in the private market. This appealed to me for a couple of reasons. Number one, I wanted a more forward thinking medical center looking at my situation, and was hoping for a new method of controlling my Prostate Cancer. Secondly, I was afraid I would not be able to get attention I needed inside the VA. The entire year of 2014 was spent working on the request. By August my PSA had begun to rise and Hormone Therapy was needed. It took until late March of 2015 before I was able to see a Urologist in the private market. My PSA was 16.5, dangerously high again. The Urologist I saw informed me that his office did not administer the Hormone Therapy method that I needed, but he did see the urgency of my situation and ordered a Whole Body Bone Scan immediately. I spent more days than I wanted seeking the needed scan before I was finally aligned to get one at the Phoenix VA Hospital. Doc Lowe called and wanted to go over the results of the Bone Scan with me. I sat in his Payson office in one of his exam rooms waiting for the news. He opened the door and stepped into the room. He planted his VA card into the computer and made some entries before turning to me and saying, There is good news and bad news. The bad news is that the cancer has matastisized outside of the Prostate. The good news is that there is only one spot at the moment and it is in your right pelvic bone. It should be an easy spot to treat with radiation. My countenance slipped into a state of numbness. I had always known this would be a possibility if I did not keep up with my Hormone Therapy. And somewhere deep down inside me, I suspected these months with the climbing PSA and no treatment might bring a price to pay. Doc Lowe was banging away on his computer keyboard as he said, I m referring you to

7 Doctor LaChance. The same Oncology department that successfully administered radiation to me in I drove the thirteen miles home to my wonderful waiting wife, Maureen. This was going to be hard to share with her. My thoughts shot back and forth from one issue to another, searching the recesses of my finite little mind for a solution to all of this. I tried prayer and words just seemed to evade me. Somehow in the twenty minutes it took me to drive home to Deer Creek, I had come to grips with the diagnosis I had heard less than an hour earlier. Now I had to share the news with Maureen. Maureen met me in the garage as I pulled our Inferno Red PT Cruiser inside. I turned the key and stepped out of the car. Well, what s the news, she asked? I ll explain it all when we get inside, I replied. I stalled for several minutes, using a variety of excuses to delay sitting with her in our favorite double recliner. Finally, I sat down, and she joined me. This is the chair we sat in to pray in the mornings, and also where we joined to talk over important life issues that all families need to talk about from time to time. It was a comfortable place for us. I looked at her and formed a word on my lips and opened my mouth. The words did not come, only sadness deep within and tears that began to wet my eyes. I struggled for only a moment for words, but it seemed like much longer. I wiped at the tears forming in my eyes. Maureen herself sat more upright in the chair, her back coming forward where she could turn more fully toward me. What? What is it, she asked? The cancer has matastasized into my Pelvis, I responded. My right Pelvic bone. It seemed, at that moment, like someone had turned the lights out and we were sitting in the darkness. We were children of light, being born- again Christians, and darkness had no place in us, but at this moment it seemed very dark. I don t remember much about the remainder of that day. The next day, Maureen and I met at our favorite recliner and sipped on a hot cup of black coffee. We both took our coffee black and started each day in this way. This morning though, we had serious things on our minds. We began with prayers, simple prayers, asking God to guide us, and to give us peace in the face of such bad news. God, in his always faithful way, heard our cry and it seemed like only moments before we were praising him for all the good things we knew about our lives. We spent much of the day in our chair. We laid out alternatives, reviewed our plans for the future, and concluded that we would be okay. One of our most remembered bible scriptures says it best, I can do all things through Christ, who strengthens me. We determined that we could give up all our hopes and dreams here on earth, as long as we always had the assurance of our salvation and that we each would live out eternity with Jesus. All else seemed to pale somehow in light of his eternal grace. We were all right. We would be OK. There was nothing to do now, except to wait for my appointment with the Oncologist. The day came fast enough and we sat across from him at his desk. I am ordering a CT Scan to take a closer look at that tumor in your Pelvis, he said. He made out the order and sent it to Doc Lowe. I was able to schedule the scan in only two days and soon I was back in his office staring at the images of the CT Scan on his computer. Good news, he said. Instead of the cancer robbing calcium from your bone, the bone is building up more calcium, and he pointed at the spot on the image. Sometimes the cancer eats a hole in the bone, but in your case, the bone is much stronger because of the added calcium.

8 He went on, Your cancer is low level and less intrusive than some, and if you don t have pain in that area, I would put off radiation until pain develops. It is imperative though that you get back on Hormone Therapy as soon as possible. Just give me a call if you begin feeling pain. Maureen, who had been quiet to that point, spoke, You mean I don t have to plan a funeral? Doctor LaChance had remained very serious throughout our two appointments, but at Maureen s remark he broke a wide smile and laughed. No, there will be no need of a funeral for a long time. I spent a hectic and frustrating week coordinating with Doc Lowe, Doctor LaChance, and the Phoenix VA, trying to get the Hormone Therapy going again. It seems that I no longer had access to a Urologist at the Phoenix VA Hospital and several hoops had to be jumped through to get approved again. Only when Doc Lowe placed an Urgent order and called attention to my ordeal over the past couple of years did I get assigned a new Urologist. My PSA had risen to 23.2, and finally I had an appointment with my new Urologist at the Phoenix VA. In light of the recent appointment scandals at the Phoenix VA and lack of adequate doctors and care people, millions of dollars had been allocated to bring the care up to a better standard. Part of that package was four new Urologists. My Urologist was experienced and professional in every way. She spent forty-five minutes with me and covered all of my concerns. I was reinstalled on Hormone Therapy and even had a visit with the Oncology Department just down the hall to get my injection in my first visit. The injection was a gel of slow release substance that would be adequate for six months. I was back on Hormone Therapy and there was nothing to do now, but wait until I could check my PSA in three months in hopes that it would be moving in a downward direction. The three months passed quickly enough and the blood was drawn. Three days later I logged onto the VA website to find a wonderful PSA number of 4.15 waiting for me. It had dropped nineteen points, a drop rate I had never seen in my years of treatment. My thoughts went to a prayer time in Phoenix with family and friends. When they placed their hands on my shoulders to pray, one of the hands was very hot against my shirt-covered body. I felt something was happening as they prayed. Two months later while attending church in Payson, people gathered around me after I requested prayer. During the prayer, one lady leaned in close to me and whispered, The Lord is saying you are healed. The prayer times were encouraging for sure, but my hope is in Jesus Christ, crucified and risen from the dead. Ultimately He is the one who heals. I accept healing in Jesus name. My followup appointment came soon and the Physician Assistant displayed amazement at the rate of decrease in my PSA. She said, It is because you are in such good physical condition that you are responding so well to Hormone Therapy. She added, You ll likely die of something other than Prostate Cancer. With the PSA dropping this fast, the cancer in your bones could just dry up. I just praise my Jesus for his goodness to me. I mentioned at the outset of this story that I had made plenty of mistakes along the way. My biggest mistake of all was, not taking Prostate Cancer serious when it was first brought to my attention in Had I gotten the biopsy then as suggested, my Prostate Gland could have simply been removed and that would have been the end of it. Because I waited six years blindly, my PSA was too high for surgery to be an option. I don t regret waiting the six months while I prayed before radiation. I think the damage had already been done before I started praying.

9 In another regard, I think now that a second opinion outside the VA would have been valuable. My health and conditioning were very good, and even though my PSA was 26, maybe surgery would have been an option before radiation. Once radiation is done on the body, no surgery can be done within that radiated area for fear of lack of bleeding control, according to the Urologists. Another hazard is listening to friends opinions over doctors opinions. We men should be better informed about Prostate Cancer. I believe every adult male should ask their doctor about PSA testing. You don t have to have a Prostate problem before you check the PSA. With modern day information so available on the Internet, there is no excuse to walk in ignorance regarding our bodies. It is a fact that men have Prostate issues. So, we have to be proactive with our health, for our own sake. I am in the hands of the living God and nothing can take my life without his approval. Until he ordains it, my death will not come, but I can affect the quality of my life by knowing what is going on in my body, and taking action to improve my attention to it. The real danger is not the C word, but our lack of awareness concerning it. My Trek Across Prostate Cancer is not over, and it is a trek that will likely take the rest of my life to finish. I am comforted though that I do not journey this Trek alone. My God is with me, now and forever.