By John Van Nortwick
I am posting this journal that records my experiences with prostate cancer in the hope that it will help one or more of the Marines or other Vietnam Vets out there. While it may be preaching to the choir for many whom have already been thru this, I feel that if I can help just one of you who is facing the same situation I did, then it will be well worth the effort. The possible relationship between Vietnam service, Agent Orange, and prostate cancer makes it even more important to post this. The increasing number of deaths of so many Popasmoke members from cancer in the recent past only reinforces this more.
I do not pretend to say that we did the right things or the wrong things, just stating the things we did. I use the term “we” and “us” because my wife, Sonja, who many of you know, was beside me every step of the way, providing the support I badly needed.
As points of reference, I served in country from Sep65 to Feb66 in HMM 363, and from Mar69 to Apr70 in HMM 263 and H&MS-16. I chased “Ranch Hand” a few times in my first tour, and none that I can remember in my second tour. I did log many landings in LZ’s throughout I Corps and II Corps, areas that had been treated with Agent Orange often over the years. My third tour as CO of HMH 463 was in Haiphong Harbor up north during Endsweep and I doubt Agent Orange was a factor. I am now 67, and am in otherwise good health. I am enrolled in Medicare, Parts A and B, and have a supplemental health policy with USAA.
This all started back in October/November 2000. On the repeated insistences of my wife, I got a routine physical from our family MD, Dr. Jose Silva. I had not had one for a few years. Part of that physical was a blood test that routinely included screening of my PSA.
A few days later, the first bad news came in the form of a call from Jose informing me that my PSA had come back at 6.71. I learned that any reading above 4.0 for a man of my age is cause for further testing by a specialist, and that he had made an appointment for me with a well-known local urologist, Dr. David Taber. I met with him in late November for the initial consultation and physical examination, the dreaded finger wave. It is probably important to note here that I had absolutely no other symptoms or discomfort at any time from start until the present. This initial examination did not reveal any further indicators such as a severely enlarged prostate that was painful to the touch. However, due to my relatively young age, and the PSA number, he recommended an ultrasound test and a needle biopsy. Had I been 3 years older, this further testing would have been limited to the ultrasound only. By now, I was starting to become very unhappy.
These tests were performed in mid December. Prior to these tests in the doctor’s office, I had to do a few things at home related to having a clean system. The tests were mildly uncomfortable but certainly very manageable. A device, about the size of a three-cell flashlight, goes where the sun does not shine. The ultrasound portion takes a few seconds and is painless other than the size issue. The needle biopsy is performed with the same device in place and takes perhaps an additional minute or two. Eight individual biopsy samples are taken, four on each side of the prostate, one in each quarter of that half. The mild pain that I experienced was similar to a household electric shock repeated eight times. I was very happy when it was over. Dr. Taber’s associate and son, Dr. Jeff Taber, and a male nurse administered these tests. I was well briefed on what was going to happen. A few minutes later, they all debriefed me, stating that the ultrasound images had not revealed any cancer, but that the biopsy results would take about 10 days. At this time, I left feeling pretty good. I had no side effects from these tests, other than a small amount of blood in my urine one time. I was told this was normal.
About two weeks passed and I heard nothing. I naturally assumed everything was OK. Surely, the doctor would not fail to call me if cancer had been found. So I sat around fat, dumb and happy. I ran into Dr. Silva, who had pinpointed the elevated PSA, at the gym where we both work out and asked what he had heard. He had heard nothing but would check with the urologist. The next day, the urologist called with the news.
“John, you have cancer of the prostate.” He went on to describe it in detail and what steps we would take next. The point that I want to make here is that you have to aggressively manage your own situation. Do not assume that anybody else in the system will do it for you.
At this time, another factor comes in to play. Do you go public with this? I first found it to be a very embarrassing subject to discuss with anyone. Initially, I told only my wife, our sons and their wives, our business partners, two very close friends, and the pastor of our church.
I was now advised to make an appointment soon at the radiology department of Providence Hospital for a metastatic survey consisting of bone scan and a CTScan. I did this immediately that same day and was set up for about two weeks in the future. By now I took either Marion Sturkey’s book “Bonnie Sue” or Billy Myer’s book “Honor The Warrior” with me to each appointment as waiting room reading. I found that anytime I started to feel sorry for myself, the stuff in either of these books soon snapped me back. Other than the barium liquid you must drink the morning of the procedures, these scans are easy and painless, unless you happen to be claustrophobic. These procedures are done to ensure that the cancer has not spread or metastasized beyond the prostate, and therefore it is operable. Apparently, prostate cancer heads for the lymph glands and the bones when it spreads. Fortunately, it is very slow growing. A few days later, Dr. Tabers’ nurse called with news that my cancer was encapsulated, contained in the prostate. Finally, we got a little good news to put on top of all the bad news. It was now mid December with Christmas around the corner so we agreed that we, Sonja and I, would come in on January 5th to discuss treatment options. We went off to the Napa Valley for a little serious family wine drinking over New Years. During this trip we informed Sonja’s sister and brother and their spouse/girl friend as the case was. I found it was becoming a little easier to talk about the cancer.
On the 5th, we met with Dr. Taber. He explained my symptoms as ”an adenocarcinoma Gleason 4+3 = 7 on the left side.” The right side was benign. In plain talk it meant that my cancer showed areas of Gleason 3 and 4 adding up to a score of 7 on the left side of my prostate. The right side was clean. Again, he stated that this was good news allowing the preservation of important nerves on the right side of my prostate if surgery was selected. He continued to explain in good detail the various treatment options.
(1) Do nothing. Continue to monitor the cancer. This option is for men older than I am, or with other serious health problems.
(2) Radiation. I will discuss that in greater detail later.
(3) Surgery, known as radical retropubic prostatectomy.
I asked for his recommendation, and found that he preferred not to give one. Finally, after much discussion of side effects, he stated that if he were a man of my age and health, he would select the surgery. At this point I brought up the issue of timing. We have had some long standing family plans for the middle of March. Would it be safe to postpone any treatment until after that time? He said that I was very safe in doing that, but that he would give me something to be 100% sure. I asked the standard questions about impotence and incontinence. The doctor explained that these were important concerns. Medical references state that 31% of men treated have these problems after treatment. However, he stated that only a small percentage of his patients had experienced permanent conditions. He continued to explain that my condition with the cancer limited to one side, together with new nerve saving surgical procedures would present a low risk of either of these conditions. After some discussion with Sonja, I said we had made our decision to schedule surgery in April. The doctor went on to say that he wanted me to learn more about other treatment options, particularly radiation, before a final decision was made. His office made an appointment for me with Dr. Rey Rodruiguez, a radiation oncologist in a week on January 12th. Before we left the office, I was given an injection of Lupron. Lupron stops the production of testosterone in the prostate, and testosterone fuels the growth of the cancer. Lupron shrinks the size of the prostate and the cancer. It also shrinks some other parts and has side effects. The Lupron shot I was given was effective for 3 months until April. I am now in my 8th week and the only side effect I have experienced is some fatigue late in the day. The Lupron side effects are temporary and will disappear as the shot wears off. However, be aware that Lupron is strong medicine, and use caution.
About this time, my brother Tom, and his wife Mary stopped by to visit for a few days. We all learned a good lesson about communication. I was not going to tell Tom and Mary until just before they were leaving, but for some unknown reason (Too Much Wine), I told it all their first night here. That was a good decision.
Sonja and I met with the oncologist on the 12th. He presented both a very detailed review of my case and an in-depth explanation of my treatment options. This meeting was for at least three hours. At the end he also presented six treatment options, they were:
(1) Do nothing as is discussed above. (2) Take the Lupron as a treatment, rather than just as a temporary safeguard. This seemed an attractive alternate until he explained that the side effects of continued use of this drug were not pleasant. Unless there was no other alternative, I was not ready to become a soprano in the choir. Enough said. (3) The same surgical procedures as discussed above. (4) Beam radiation. This would require 8 weeks of radiation treatment, 5 days a week. The actual treatment lasts only a few minutes each day and is painless with no significant side effects other that fatigue and reduced energy. He did warn that some damage to organs, such as the bowel, in the pelvic area might occur. (5) Radioactive seed implant. This procedure implants radioactive seeds directly into the prostate. These seeds are stronger than beam radiation and replace that procedure. This procedure can be done on an outpatient basis. (6) Beam radiation and radioactive seed implant. In this, the radiation is reduced to 5 weeks, 5 days a week. Then, after a short break, radioactive seeds are implanted directly in the prostate. This procedure takes place in the hospital, but only on an out patient basis, and is performed under local anesthesia.
Once again we asked his recommendation; and as Dr. Taber had previously done, Dr Rodruiguez preferred that I make the decision. However, after more discussion, he concluded that if he were I, he would select the radiation and seed implant. Although this was starting to sound more attractive than surgery, we now left his office undecided, having pulled back a bit from the original surgery decision. This was starting to become more confusing.
At this point, I had become more comfortable in discussing my condition with more of my family and friends. The net result of this, however, was that we were now being flooded with the experiences of others, recommendations of what to do, and other advice. They included everything from “magic cures in Mexico” to “use of herbs”. It became a little overwhelming. However, I do want to emphasize that open communication is very important and helps to handle the overall situation. Do not keep it inside you.
After more thought and trips to the Internet, I felt I needed more information about the radiation/seed implant and set up another consultation with the oncologist. A week later, I returned to see him. He spent another hour or so explaining and answering my questions. At this time, I now was sure that I would go the radiation/seed implant route and set up an appointment to return on April 5th to have my pelvic area measured and marked for the beam radiation which would start on April 12th. In my mind this was all settled. About this time I also began to investigate the submission of a claim for disability to the VA based on Vietnam service and exposure to Agent Orange. My earlier inquiries indicated I needed my DD214 (Record of Separation From Service) as well as copies of my diagnosis. The search for my DD214 dating back to August 1976 began. As usual, Sonja found it. My experience throughout with the VA has been very positive. They are very professional here.
I found myself able to discuss my cancer more and more freely by this time. This was helpful to me as I found that prostate cancer is very common to men of my age and that many of my friends and associates had already experienced it. They were all now healthy, happy and still vertical.
Some weeks passed and I picked up a mean winter cold somewhere. After trying to treat it myself with no success, I once again listened to Sonja’s good advice and went to Dr. Silva for relief. He handled the cold quickly and then wanted to discuss my selection of radiation/seed implant treatment. In short, he was visibly upset that I had made this selection and proceeded to tell me why I should have the surgery. Age, good health other than the cancer, and long term results were some of his arguments. I began to reconsider.
At about the same time, Sonja met an oncologist who was transferring from William Beaumont Army Medical Center. She told him my story. He strongly suggested that we talk to an associate of his, Dr. Mike Bagg, a urologist at William Beaumont. His reason for this recommendation was that we would be able to get a completely unbiased medical opinion that was not in any way influenced by the financial side of the medical business.
He set up the appointment and a few days later we met with this doctor. After a complete review of my history, he said the same thing that Jose had said: Have the surgery. Do not have the radiation/seed implant. He said he main reason was that while both treatments had very similar statistical success rates with surgery perhaps a point or two better, the matter of a possible reoccurrence of the cancer years in the future was the overwhelming reason for surgery now. Should the cancer reoccur in the future and radiation had been the first treatment option, it would be impossible to have radiation a second time and surgery would be the only option. The side effects of this surgery after radiation were described as very severe. This doctor went on to say that he knew both Dr. Dave Taber and Dr. Jeff Taber very well and had the highest professional and personal respect for them. We considered this information very carefully. I made another appointment with Dr Taber. Also, it was at this time that I decided to write all this down in hopes that it might help one or more of you out there.
On February 26th, Sonja and I met again with my urologist. We had made our decision. The surgery was scheduled for April 19th. I would give my own blood twice, on March 29th and on April 12th. I would be admitted to Providence Hospital the morning of the surgery, April 19th. I expected to be back at work and play by the middle of May.
Shortly after this, we got a call from one of my favorite people, Abby Arlinsky, who is sort of a step niece. She is a counselor who works with inmates of the Phoenix jail, and is well connected in the medical field. Abby had heard of my situation through the family network and offered her help in any way that she could. She asked who my urologist was and said she was going to check him out.
On March 4th, I submitted my claim to the VA for disability and was registered in the National Agent Orange Registry.
Until now, this journal has been a recounting of events in the past. From this point forward it will be as near real time as possible.
March 13th, and we are marching along to the surgery date of April 19th. Perhaps a comment on Lupron is appropriate here. I have experienced minor “hot flashes” (yes, ladies, those hot flashes) about four times a day, and some loss of energy. I seem to tire very easily, and sleep eight or nine hours now, rather than the usual six. This should all go away soon as the Lupron starts to wear off in the next few weeks. If I had to do it over, I would question this drug more. It is very expensive, even if Medicare/USAA are paying. But, I guess I value the protection it affords as we wait for April 19th. I want to make an important point here. Good physical conditioning is a big plus. I have never been a fanatic about this, but I do work out at World Gym twice a week. My relatively good physical condition has helped me to deal with this, both emotionally and physically.
The “long standing family plan” mentioned in the beginning comes up this weekend. Doug and I will join my brother, Bill and his two boys, Thomas and Peter at the 12 Hours of Sebring sports car endurance race in Florida the day after tomorrow.
March 23rd. We are back from Sebring. It was a ball. I think well worth the earlier decision to put off treatment, but now we are up against it. Many who have been there before me have stated that I will breeze through this. I surely hope they are right. Given the choice of what is ahead for me, or a week of recon extracts, I would probably opt for the latter. I am now nearing the end of the 3-month Lupron shot and its effects seem to have increased more. The hot flashes are more frequent and slightly more annoying. I do find myself needing an afternoon nap many days. I know that many of my Marine friends, particularly Dick Cooke, might say: “And what’s new about that?” Next week I will start to donate my own blood so that it will be available for the surgery.
I would like to add here that the high level of spiritual support that I have received continuously from our pastor, Father Hal Johnson, has meant a lot to me from the beginning.
On March 27th, the increasing number of apparent Agent Orange related deaths reported in the Popasmoke NOTAMS has made me decide to go public before the completion of this journal. I posted a short NOTAM on Popasmoke that said what was happening, and that I would be happy to discuss it and answer any questions. The response was immediate. Within six hours I had a call from a Marine who I served with in 1972. He had been in country in 1969 and 1970, and had no idea about the Agent Orange/Vietnam/cancer connection. I filled him in as best I could. He gets annual PSA checks already, but now knows what to look out for. Just that one call tells me I have done the right thing.
Also, Abby called today to tell me she had checked my urologist out and gave him her thumbs up. Glad to know that, I guess.
On March 28th, went into Dr. Taber’s office and got my final briefing, which follows below.
SCHEDULE: 29 March – 19 April
Thursday, 29 March: Eat a good breakfast. Arrive at Providence Hospital Blood Bank at 0630. Give blood at 0700. Start iron supplement 3 times a day. Thursday, 12 April: Eat a good breakfast. Arrive at Providence Hospital Blood Bank at 0700 and give blood. Monday, 16 April: Pick up Magnesium Citrate and other great stuff. Tuesday, 17 April: Get USMC haircut. Wednesday, 18 April: Take only clear liquids starting at 0600 for next 24 hours. Drink one bottle of Magnesium Citrate. Have nothing to eat or drink after Midnight. Thursday, 19 April: Perform system flush at 0300. Check into Providence at 0530 at the Hilton Towers entrance. Surgery is scheduled at 0700.
On 29 March, the first blood donation went as planned with some very nice and caring people at the hospital.
Sonja and I jumped over to Phoenix for a few days on 30 March. We first R.O.N.’d with our long time (43 years) Marine friends, Lew and Pat Lewis at their new home on the 16th fairway of Anthem Country Club. We had two days of great golf, then I came home and Sonja stayed on for business for a few days. This was a great pick up for me, as we get closer to the date.
On 12 April, I gave the second unit of blood. I also gave a large amount to the IRS this week. The blood donation went smoothly and we also did some of the check-in procedures scheduled for 19 April. These were an interview: (Do you know why you are being operated on? Apparently some people do not.) ; An EKG; a chest x-ray; and more blood tests. Also, seem to have found a new friend, Mr. Arturo Castrol, who is having same surgery as I am, same day, same Drs., three hours later. We followed each other around all morning yesterday, regular prostatectomy buddies. Arturo is about 10 years younger than I am, was a Seabee in Vietnam, and is now a foreman for a local construction company. We seem to be a lot of support for each other. Later, I completed my VA paperwork. My claim for Agent Orange related disability has been submitted.
I have learned a few things that might be news to some of you out there. If you are donating your own blood as I did, do not have any dental work, including cleaning in the three days prior, or they will not take your blood. Also, if you are on adult low strength aspirin (81 mg) for mild high blood pressure, check with your doctor. He will want you to stop taking it 3 days before the surgery. The aspirin is a blood thinner and apparently makes stopping any bleeding harder.
Well, it’s now 17 April, and I may not have time to go to the hospital day after tomorrow. The phone just keeps on ringing with old friends from all over checking in. Lots of E-Mail also arrives that will be answered soon. It makes me feel very humble. Thanks, JD, Ted, and the rest of you guys.
It is one more 0 Dark Thirty launch on 19 April. We are on the way. I will wrap this up in a few days. Semper Fidelis to all.
Jump forward to Monday, 23 April. Before I go into the details of the last 5 days, I have just one thing to say. I DO NOT HAVE PROSTATE CANCER ANYMORE! Damn, it feels good to be able to say that.
Anyway, backing up to 19 April. In true USMC fashion, we managed to arrive at the hospital 5 minutes early and waited for them to open. By 0610, we were upstairs in a prep area. I dropped my sweats and Popasmoke Reunion 2000 T-shirt into a personal effects bag, and donned the wonderful hospital gown. Sonja was still there with me, and our son Doug was also there by now. Various hospital administrators stopped by with forms to sign and questions to be answered. Then the man with the razor appeared to shave the appropriate part of me. Soon, the anesthesiologist stopped by to introduce himself and give me a shot that would relax me. He was very professional and business-like. I knew I was going to like him a lot. At 0730, both Dr. Dave Taber and Dr. Jeff Taber came in, gave me the high five, and asked if I had any more questions. After all these months, I finally mustered up enough courage to ask where they were going to cut. Dr. Dave poked his finger in my belly button and drew it down to my pubic area. It was about then that I must have tapped out for good.
At 1015, I woke up in the recovery room with Sonja standing beside the bed holding my hand. I knew right then that I had made the right choice 40 plus years ago.
About an hour later, I was in my room, very sleepy, and hooked up to oxygen, morphine, antibiotics and a relief tube. Later that day, low blood pressure became a temporary issue. That was quickly resolved with a unit of my own blood. Sonja told me that Dr. Taber had told her immediately after the surgery that it looked good, that no cancer had been found in the lymph glands, and they got it all. They would know for sure in a day or so when the pathology came back. I also learned that my next-door neighbor on the floor was Art Castrol, who had followed in my footsteps 3 hours later. We took turns supporting each other, and are going to have lunch together soon. His wife told me Art was very lucky to have a tough Marine next door. I am not real sure who she is talking about, but if it works for them… Art went home a day ahead of me.
The next 3 days did not move fast enough for me, but things got better quickly. The oxygen went away soon. I turned the morphine off myself on day 3, April 21. Did not eat much at first and gas became a big issue for a while, until they gave me something for it. I was soon sitting in a chair and then walking by day 2, April 20. On the morning of day 3, Dr. Dave came in with great news. The pathology confirmed that they got 100% of the cancer, and the lymph glands were clean. He was very pleased and you can bet that we were also. They just did a great job on me. All the drains had now been removed from my incision. By now, many friends were stopping by. It was great to see them, but sometimes tiring. Pain has been very low, and not an issue at all. Best sight I had was the faces of three of my five granddaughters peering very gravely around the door jam. I believe they expected to see something like me hanging inverted from the overhead. Our other son, John, and his family called twice a day from New Zealand. I hope the blueberry crop is very good this year.
Day 5, 23 April, and I was out of there at 1116. It is great to be home. I immediately took a nap. I go back in a week to have the staples out, and a week after that to get rid of the relief tube. I could now give one of those Oscar Night Thank You performances, but it would be very long, and this journal needs to be closed. You all know who you are out there. Thank You, God Bless You. I am crying.
My progress since 23 April goes like this: 23 April – 30 April: Spent the week at home resting and dealing with the relief tube. 30 April: Staples came out. I go into work and find I can spend about 5 hours there before crashing and burning. 4 May: The relief tube came out. That may have been the single greatest moment in my life. I felt so good that I bought Sonja a David Yurman bracelet. Regaining control of my urinating is now the main issue. That is going well and I estimate I am about 80% there. I want to add this note. Had we selected the radiation/seed implant procedure, we would be right in the middle of it right now with the implant still to go. We would not know if I still had cancer or not. We made the right choice. I am cleared to play golf on 20 May. I go back into Dr. Dave on 29 May for a PSA check and final solo check ride. 29 May: I will make this real quick. My PSA reading is now 0.10, which is the best news I could get. Also, my urinating is completely under control. 15 Oct: I have now had a 6 month check up. My PSA was still 0.10, the lowest that is possible to measure. The physical exam was also good. 15 May: Another PSA check up and another 0.10. Also the VA granted me 30% disability, which when the tax free feature is factored into my USMC check it means about $ 50.00 a month. I look at it like a farm subsidy, and it is better than no mail at all.
We, the Marines and the other Vietnam Vets who fought and survived the war are at a very high risk of becoming Agent Orange/Prostate Cancer statistics almost 40 years later.
If I can look this deadly disease straight in the eye and win, you can too. Have those regular physicals and pay attention to your PSA number. Early detection is the key. Talk to the VA. That is an order.
Semper Fidelis. John Van Nortwick, LtCol, United States Marines Corps, (Retired)