Thursday, December 10, 2009
Who in the World Do You Think You Are?
On an outing to Disneyland this past November we found ourselves surrounded by an abundance of heads donning Mickey and Goofy ears, wannabe Jedi Warriors and an assortment of Disney princesses. And those were just the parents. As for me, I just settled in to being plain old John from Vancouver. No fanfare, no autograph seekers and no special treatment at any of the attractions. The fire truck driver did let me sit at the wheel on Main Street while he snapped a picture. Wow … I sat where Walt Disney sat!
Along with the fictional characters of our youth, sports teams and athletes, beer companies, and colleges across the land all strive to imprint themselves into our personalities. What does your favorite t-shirt say? I know I have my fair share of logo-laden garments. Your sports teams wax and wane, the t-shirts fade and tear, and your college teams still have a hard time graduating their star players. What is it that drives us to identify ourselves with other people or other things? Are we trying to feed our alter ego or live vicariously in another galaxy far away?
With prostate cancer another defining dimension is added to your life. However, this dimension chooses you rather than you choosing it. No one can really answer the question, “Why did I get prostate cancer?” But we can wrestle with this next question, “What can I do now that I have or have had prostate cancer?” Do I wear it like a hat or a T-shirt? Truth be told, there is not a market for “Prostate Power” t-shirts. There is an enigma associated with this cancer. It strikes at the core of a man’s “maleness.” This is a cancer that most men would rather not talk about.
One of the benefits from the offerings for the prostate cancer patients at Loma Linda is attending the Wednesday, men only, clinical support group. In this format we can bare it all in a manly sort of way. No fancy paintings on the wall and no soft music or water features attending our souls. Just a bunch of guys sitting around a table with a center piece of chocolate chip cookies and fruit juice discussing and sharing questions and concerns about our personal journey with prostate cancer. We all had something to add because we all had been impacted by this cancer.
With more men being diagnosed earlier, the opportunities to draw on the experiences of others are also increasing. Not all of us are going to start a prostate cancer foundation, but opportunities to involve ourselves in others’ lives are all around us. At work, in the neighborhood, at the gym or at the barbershop we can find men who are or will be faced with this disease. This is not a challenge to wear your story but an invitation to share your story. After all this is who we are.
Tuesday, November 10, 2009
Walks of Life
Recently a friend of mine challenged me in this area. Even though unemployment and prostate cancer interrupted what I thought was my walk of life, he encouraged me to re-evaluate my life path. Prior to my diagnosis of prostate cancer I must confess my “walking” had been focused on the “movement” aspect not the “meaning” component.
As I evaluate my present “walk of life” I am continually reminded I am a work in progress in need of recalibration like my pod in Gantry 3. With each daily treatment two new x-rays are taken to see what adjustments are necessary to ensure the target area is hit as planned. Each day I hear the technicians call out the new positioning coordinates. The adjustments are slight, but they are essential to accomplish the intended results. I must ask myself, “What adjustments do I need to make, even if they are ever so slight, to be on target for each day?"
“… walk in a manner worthy of the calling with which you have been called, with all humility and gentleness, with patience, showing tolerance for one another in love, being diligent to preserve the unity of the Spirit in the bond of peace.” (Ephesians 4: 1-3)
Thursday, November 5, 2009
Sunday, October 25, 2009
Upside Down
When you encounter life changing circumstances like a death of a loved one or a life threatening diagnosis it often turns your world upside down. As we have been interacting with various patients undergoing proton beam treatment (PBT) here at Loma Linda, this has been a recurring theme. Sure we all came here by choice but it was not something we intended to do. Last October a medical trip to Southern California to treat cancer was not on our “must do before we die” list. Proton therapy might be a wonder of science and physics but it is not one of the “Wonders of the World.”
It is apparent that there are a number of elements that help in the process of turning things back around. Like with the eye and the retina ruse, the brain is vital in restoring focus for those difficult times in our lives. From those we have talked to the word “research” heads the list of activities implemented to right the ship on this course with prostate cancer. It is personal research as well as relying on the capable research of others.
Time is another key ingredient in rectifying one’s perspective. Some of life’s challenges require more steps than others, thus more time. If you are growing squash it is only a matter of months before you see the fruit of your labors. But if you want an acorn from an oak tree it is another story. Many patients here spent much time in their deliberations before settling on a verdict to treat their cancer with PBT.
Faith enters the picture often within this framework. There are numerous individuals being treated here at LLUMC who have expressed how their faith and personal relationship with their God has been an anchor in their journey. Martin Luther King, Jr. capsulated faith in this way: “Faith is taking the first step even when you don't see the whole staircase.” Taking this analogy a step further you can see how the mind and the eyes work together in making that next step. You may be looking for all of the answers to what lies ahead, but all you really need is enough information to take the next step.
Like with the newborn baby, an upside down world can be turned around with not only our brains, but also with time and our faith going to bat for us.
Proverbs 15:22 (New Living Translation)
“Plans go wrong for lack of advice; many advisers bring success.”
Sunday, October 11, 2009
Help is on the Way
The thundering noise can have a number of effects on people. To some it might be an irritation. To others it signals that help is on the way. When we first arrived all I was hearing was the clamor from these contraptions. When we learned about the trauma center we understood the significance of the noise from these “flying hospitals.” With my “hearing” I was able to add knowledge and understanding. Can you imagine someone living near the facility saying “can’t they land those things somewhere else?” Ignorance can have a stifling effect on our perception and points of view. I see the proton center here at LLUMC in a similar light.
As I researched prostate cancer and consulted with doctors, proton beam therapy (PBT) was a blip on the radar screen. Many patients are not even presented with this treatment as an option. As I have read patient testimonials I have been amazed at how many have stated their doctors were not aware of it. Some consider this treatment “experimental” or “unproven.” Added to that is the fact that some insurance companies still refuse to reimburse or cover the cost of this treatment. Much of this probably stems from a lack of knowledge regarding PBT.
Proton technology has been around for a long time. The first patients treated with proton beams were done so at the Lawrence Berkley Laboratory in California in 1955. But it wasn’t until 1990 that LLUMC opened “the world’s first proton facility designed for patient treatment and research in a hospital setting.” It was the only one of its kind for 13 years. To dispel the misconceptions regarding PBT consider the following. About 55,000 patients worldwide had been treated with proton therapy with over 12,000 of those patients having been treated at the LLUMC proton center. There are currently six proton centers operating in the United States with four more under construction and others under development. Medicare and the majority of private insurance companies cover this form of treatment; and the U.S. FDA has approved it use for treatment of cancer.
There were many compelling medical and personal reasons for me in choosing PBT beyond those mentioned above, but I was not going to let my own ignorance get in the way. The ability to distinguish between opinion and fact was vitally important. The more I studied prostate cancer the more I felt drawn to PBT as my treatment path. The constant helicopter traffic is a reminder that help is on the way here at LLUMC. It is a comfort knowing “I am at the right place at the right time.”
Monday, September 28, 2009
Off Ramp: Loma Linda
Wednesday, September 16, 2009
Off Ramps
At first glance, encountering prostate cancer (PCa) on life’s journey appears to fall under the category of a “detour” off ramp. Detours often signal the fact there is something going on ahead requiring attention. Sometimes we know ahead of time, which in turn enables us to plan our route accordingly. However, often they catch us off guard and add stress to our travel plans. In my case, PCa definitely caught me off guard and it has definitely put me on a different course than I would have chosen. I think most people are resistant or at least balk at a change from an original plan. Change can be uncomfortable especially when it is out of our control. In the case of a detour, it is a matter of regaining control. In the old days this was the point when the maps would come out. Nowadays it is marked by the reassuring words emanating from our GPS, “re-calculating.” It has often been stated, “knowledge is control.” That is especially true when one is forced to navigate the prostate cancer path. But it is also vital to remember the detour is part of the new route to get us to our final destination.
As I have been reading various cancer related stories, I have noticed how many have stated how their disease had caused them to re-examine their lives and had given them a new perspective on life. This re-evaluation process is evidently the “construction project” that required the detour in the first place. This is a road of discovering who we really are as a person. Eventually this type of detour or off ramp will more than likely get us back on the route to our destination. But don’t be surprised if you find yourself on a new road once the detour ends. In fact you might find yourself on the scenic route full of new discoveries.
“Many are the plans in a man's heart,
Proverbs 19:21 (New International Version)
Friday, August 28, 2009
Gideon Moments
The way this speaks to my situation relates to how am I “fleshing out” my faith with PCa. I think, if we are honest with ourselves, we often pose Gideon’s question before God: “why then has all this happened to us?” With PCa it is one of the first questions you ask yourself and God. When you are first confronted with this diagnoses the answer is not right before you in a gift-wrapped box. It is unveiled before you through the process. It is an “answering” of the question through the ongoing experience. Since I am at the beginning of this path, I only have part of the answer: to trust God more fully and allow my faith to grow “knowing that the testing of (my) your faith produces endurance.” For now I have faced the fact of my PCa and I am on the road to doing something about it.
Before the “action” took place in the form of a decision to proceed with proton beam therapy (PBT) there was a lot of groundwork laid in research and in prayer. Here is a sampling of the types of prayer requests. “Please lead me to competent doctors who can give me good direction.” Or, “Please put people in my path to help shed some light on some of this confusion.” Those prayers were answered from the first day forward. The urologist in the clinic where my primary doctor practices did not have any openings at the time. I was referred to another urologist who is highly regarded in our community and with whom we are very comfortable. One of the first non-medical persons I discussed my PCa with is a pastor friend of mine who began his PCa journey over a year ago. He had a very enriching experience at the University of Florida Proton Institute with good results to this point. That phone call laid the foundation for my consideration of PBT as a viable option.
Just recently one of those “Gideon Moments” happened. Our family and friends have been praying with us for clear direction in our decision from the beginning. The day after one of those prayer times with our family (Thursday, August 20th), I got a call from Loma Linda University Medical Center (LLUMC) to see if I was available to move up my tentative appointment from the last part of October to the middle of September. I asked for a day to think it over which they allowed me to do. When I got that first phone call, I immediately asked God and myself who was responsible for that call … was this coincidence or providence? “Would this be a good time for a fleece?” I said to myself. When I think back, a few days prior I kind of sent one of those prayers out there in the form of “some type of sign would be nice.” “Was this call from LLUMC an answer?” When I called back to LLUMC to confirm the appointment a little problem appeared: that slot to had inadvertently been given to another patient. It must have been coincidence instead of providence. (A side note to this is I had set up the original October/November dates back on July 13th for a consultation knowing the lead times were quite a ways out at LLUMC. At the time I had this inner prompting to get things going at Loma Linda even though we were still very much undecided in our course of action.)
With that Thursday phone call I admit that I was more than a little unnerved by realizing “this could be it.” All of the sudden I had to make a decision. The timing seemed a little “too” quick with the pending arrival of our daughter’s forth child (our 8th grandchild). But we found ourselves emotionally ready to make the move after processing that initial phone call. I did not have to wait too long before LLUMC called back the following Monday with a new date of September 22nd for a consultation with treatment beginning a week later. There is both medical and personal significance to these dates. From a medical perspective, when we first presented the November scenario to my urologist on July 20th he was uncomfortable with waiting that long to begin treatment. He reminded us it would be nearly five months from my original diagnosis until treatment if we were to go with PBT at LLUMC. If we were to wait for the November treatment date he recommended starting hormone treatment to keep the cancer from growing any further. He assured us he would support us in our decision.
On the personal side, the September 22nd date gave us a little more cushion with the pending arrival of our new granddaughter; and it also put us down in SoCal for my nephew’s wedding the weekend before starting treatment. And to top it off we were able to find housing for the dates we will be down there within walking distance to the medical center. The coincidence angle was loosing its foothold here on this one. I also do not think it was coincidence that someone else has that other appointment slot. I hope I run into him during our treatments.
Thursday, August 6, 2009
Nobody Like You
I know this sounds a little like something you would hear from Mr. Rogers, but he was right in his song “You Are Special” …“You are the only one like you.” I have found this to be especially true with other men diagnosed with prostate cancer (PCa). Even though this is the most common form of cancer found in men, no two patients’ stories are alike. Similar, yes . . . but just alike, no. There is a common bond that connects us; there is a common destination; but the choices we make regarding our treatment path are deeply seated in the heart and soul of the individual.
On my path with prostate cancer I have been reading copious accounts and have listened to many personal testimonies of men who are at various places in their journey with PCa. In doing so I had hoped to gain some direction for my own course of action. While I have found a wealth of information and encouragement from these accounts I have yet to come across a story that jumps off the page and says, “This is you, John; this is the answer you have been looking for!” I have found that I am unique in my situation with this cancer. Unique, but not alone.
One of my favorite discoveries through my research on the Internet was finding http://www.yananow.net/. This is a site dedicated to the support of men with prostate cancer. The acronym stands for “You Are Not Alone Now.” This has been an incredible resource for gathering information and help along the way. Within the pages of this site men tell their stories in a journal type format. I have even started email correspondence with a couple of “mentors” who have stories similar to mine. In fact one gentleman I contacted in the U.K. made the comment that we were “pushing the buttons of coincidence” with our stories. The first thing that caught my attention was that we were both diagnosed on the exact same day. We have signed on to each other’s blogs to keep up to date with each other’s progress. But even with our similarities we easily found our differences. With each individual there are medical conditions and factors that play into each scenario: relationship dynamics, personal preferences relating to “quality of life” issues, doctors’ opinions, age, PSA levels, Gleason scores, and on an on. In my journey I am finding that each man has made or is making a decision for treatment (or non-treatment) based upon his individual condition. This whole process pushes one to see where his core values lie.
Certain values rise to the surface in times like this. In my case the loving relationship I have with my wife is a prized possession. Many accounts I have read make reference to men who experience a deepening in their relationships with their spouses. Unfortunately this can go the opposite way as well. Your mettle is definitely tested when you are faced with any life threatening circumstance. There is an ongoing battle beyond the walls of the prostate gland that challenges our innermost being. It surfaces in the wake of the “w” questions we looked at earlier and how we resolve them. What can be done on your soul’s journey to guard you, especially when confronted with the harsh reality of a cancer invading your space? The answer is found through another type of loving relationship. This is what the Jesus of the Bible offers in the Gospel of Matthew: “Come to Me all who are weary and heavy laden, and I will give you rest. Take My yoke upon you and learn from Me for I am gentle and humble in heart and you will find rest for your souls. For My yoke is easy and My burden is light” (Matt. 11: 28-30). Notice the “rest” part is predicated by “come to me.” YANA got it right, you are not alone. We not only have each other, we have the Son of God at our beckoning. Or should I say He is already there with open arms calling us to “come … and I will give you rest.”
The need for rest is interesting in light of facing PCa. Finding a treatment path is a wearisome process to say the least. But inner rest is intimately associated with the act of trust. There are the elements of trusting our research, hopefully trusting our doctors, and trusting our instincts. There is also the need to add discernment to this equation. There are many voices capable of influencing our decision. The question is, “Which ones do we entertain?” This is where trusting Someone bigger than our dilemma brings about true rest. The promise above in the verse from Matthew’s Gospel does not say “come … you might find rest, it says you will find rest.”
But remember, there is no true rest until you come to Jesus
Saturday, August 1, 2009
The “W’s” of Prostate Cancer
The first biggie is “woe.” Now I know this may be an obscure word to some of you, but it really hits home in this instance. For you King James folks, you are probably saying “thou hast smitten the anvil squarely with that one.” “Woe” is an old English word that means “grievous distress, affliction, or trouble.” Hearing my diagnosis for the first time was one of those “woe is me” experiences. Often at the core of this reaction is the fear of the unknown or unseen. In the case of PCa it is often both. Add in the fear of dying and you can see how this can be woeful moment. Once you pick yourself up and begin the pilgrimage down the road of knowledge and understanding for this cancer, the “woe is me” begins finding solace along the way. Notice I did not say the woe part goes away. But there is comfort and hope out there from a multitude of sources. There are those who have gone on before us and have paved the way including patients and countless people in the medical community. And others will come into our lives as we navigate through this ordeal. Then along the way hopefully you will discover “wow” factor .
As you study for this course in PC 101 you become amazed at the medical progress with not only prostate cancer management, but for all cancer treatments. This is part of the “wow” factor. This disease can and has been licked many times over thanks to the advancements in modern medicine. Even though we find disagreement in the medical community regarding the best treatment for PCa, we have excellent outcomes for most of these treatment options. This is especially true with an early diagnosis. Just think, PSA testing has only been going on since the 1980’s. It was not that long ago when “PSA” stood for an airline company rather than Prostate-specific antigen. Whether it is your urologist, your oncologist, your radiation oncologist, or your naturopath, they each have confidence in their discipline’s ability to meet the challenge of curing or managing your cancer. Even though this is confusing to the patient, we can at least sit back and say “wow, isn’t modern medicine amazing in that we have these various options available to us at this time in our lives.” Just think how much more will be accomplished by the time our sons and grandsons may have to walk down this road. More than likely there will be better options for them.
There comes a time in your pretreatment journey when you will likely be overcome with the anxiety of making a decision regarding a course of action. This is the “whatever” stage. It is riddled with questions and uncertainty. This is when the treatment you were leaning towards gets knocked around and the options you thought you eliminated jump back up on the table. I think I hit this wall last week. But I also think it marks a turning point in the decision making process. It shows you are doing your homework. The “whatever” stage is a double-edged sword. On one side is the negative, colloquial, surrendering type of “whatever.” This happens when you throw up your hands in despair and say “whatever.” On the other edge you find the more positive, growing assurance type of “whatever” that comes from knowledge and understanding. This involves processing all the factors you have deemed important for your particular situation. On this side you come to grips with knowing that “whatever” you choose (if you have done your homework well) your choice will be the best decision for you. Do you wonder if there is something beyond doing your homework? I believe there is.
The final “W” word I would like to take a look at addresses this question. It is the word “wonderful.” This is definitely not a word you associate with prostate cancer… and it should not be. This cancer is a deadly, horrible disease that impacts many men, their families and their relationships. But the word wonderful does describe how we are made. The psalmist wrote in thanksgiving to his Creator “I am fearfully and wonderfully made; wonderful are your works, and my soul knows it well” (Psalm 139: 14). For me there has been a growing sense of wonder as I have delved into the nature and complexities of the human body and soul. Do you also see the link between knowledge and thanksgiving from the verse above? In the case of King David (the writer of the psalm) it is the knowledge of his Lord’s personal involvement with his life. This is summed up early in the psalm when it is declared: “Behold O Lord, You know it all.” This has been a comfort for me as I face PCa head on. Another gem from this passage is to listen to your soul. This presupposes there is some substance within the soul to manifest this kind of response. Do you have that sense of how wonderfully made you are? Are you aware of the hand of God in your life? There is a deeper healing beyond the prostate that is available to all mankind. I would encourage you to spend some time in this psalm as part of your journey. Hopefully you will also find knowledge and meaning for your own soul as you digest its words.
Sunday, July 26, 2009
Who Gets Prostate Cancer?
Some like to weigh in with the “what if” game. I am one that typically does not go down that road, but in this case it might be interesting. For starters, let’s look at what I knew or did not know. I hate to admit it but I was not well acquainted with my little buddy "the prostate gland" and how vulnerable he was to cancer. What I had logged into my brain was the statement that “more men die with prostate cancer than from it.” That automatically left me off the hook, or so I thought. But in the “what if” game, would things have been any different had I known that 1 in 6 men will have prostate cancer in their life time and this statistic jumps to 1 in 3 if your father had the disease? In my case, my father did have PCa that he had treated and is doing quite well. Or, that 220,000 men will be diagnosed with PCa this year? In the case of men whose fathers have or had PCa it is imperative to know that part of your family health history. If you do not know, ask someone who does.
What if I had been more aware of what was beneficial for my prostate and what was detrimental to its well being? I had some ideas like red fruits and vegetables are good (the lycopene connection; http://www.lycopene.com/); soy products are a friend of this gland; and “be sure to take your saw palmetto.” Now that I am on this side of the prostate cancer statistics I am finding out what a large part diet and exercise play in prostate health. Good nutrition is always important whether you have PCa or not. It is interesting that the nutritional elements that help in the war against high cholesterol and heart disease are in the war chest for prostate health. It is kind of like everything you know you should not eat, you eat because you live in the USA. The land of milk and honey is now the land of beef and pork and the high fat diet. That is slowly changing with heightened consumer awareness to the benefits of a healthy diet. Would things be different had I known the effects of diet and nutrition in fighting PCa years ago?
Since I cannot go back and change my past or even what I learned or did not learn in the past, what can I do now? That brings me to the purpose of these writings: to help me process my thoughts and actions in fighting this battle; and to send out a signal in helping others heighten their prostate health awareness. That includes what has been mentioned above as well as screening and early detection. Cancer does not always play by the rules, but it is wise to be proactive. To the best of your abilities, be in charge of your health!
Friday, July 24, 2009
A New Journey into the World of Prostate Cancer
"The decision was influenced by the following:
The results of your ELEVATED PSA RESULTS"
These are the words that put us on a journey into the unknown world of prostate cancer (PCa) on May 20th 2009. At the time we did not have a diagnosis of PCa, but the words mentioned above from West Coast Life Insurance Co. triggered the events that led to that diagnosis on June 30th, 2009. My previous PSA levels from earlier physicals were slightly high but not alarming. Even my current level is not alarmingly high for my age group. At 4.02 it was .01 above the insurance company’s threshold. What we realize now is that we should have been put on “Prostate Cancer Alert” years ago.
My urologist informed me that I am in the very early stages with this slow growing cancer and the outlook for a healthy positive outcome is very good. That .01 was a gift, not a curse. When you have prostate cancer you would rather know earlier than later. Even so, it is still a diagnosis that one does not look forward to hearing regardless of the stage. At this point on our journey we are at the “treatment options” phase, which we have found out with PCa is not a “no brainer” decision. Fortunately with my early diagnosis we have time to sort through the options in making our decision on a treatment plan we feel is best for our situation.
The “we” part of this equation is my wife and myself. What we have found out along the way is that doctors are great allies in this battle, but the ultimate decision rests in the hands of the PCa patient. This is because there is no “clear cut” treatment (no pun intended) for a person with a diagnosis like mine, or perhaps yours (early stage PCa and contained within the prostate).
Going in for my consultation with my urologist to get the results of my biopsy, I had already come to grips with the likelihood that I had PCa. Instead of being part of the "1 in 6" men that will be diagnosed with PCa I was in the "1 in 3" camp (my father also had PCa). During my initial exam with my urologist, he found a nodule that he informed me had a 25% chance of it being cancerous. With these factors all aligned I thought I was “prepared” to hear the news. What floored me was hearing that surgery was the preferred option for treating my cancer in my stage and at my age. My first reaction was that this seemed pretty drastic. But then again, I had not enrolled in PC 101 yet.
I was also encouraged to look into the other options, but the idea of surgery had never crossed my mind. My father had excellent results with Brachyherapy (seed implants) and that was the treatment I was expecting to hear for which I was an ideal candidate. From that day forward my wife and I have been enrolled in this self-guided crash course in Prostate Cancer research.
As we have discovered with PCa, there is much information floating around with no one treatment standing out above the rest. This is evidenced in the testimonial sections of the many websites directed at PCa patients. What you find are many good treatment options with varying degrees of success in the results and side effects. We are still in the “undecided” camp when considering the options with additional consultations and second opinions scheduled. It would be nice if someone could walk up to you and hand you a key to unlock the door to the right treatment for you. However, it is more like a serious game show where you must choose your prize from behind one of the many doors that you have before you. At least in our case the doors are marked. The uncertainty lies in not knowing for sure what results you will have once you go through your door of choice.
This is where we are today: seeking, sorting, and studying the options. What door do we choose? The doors that appeal to us the most are in the radiation camp, with Proton Therapy at the top. Next week that might change when we meet with a radiation oncologist as we look further into other radiation therapies. An interesting side note is while seeking opinions and data from various medical professionals, my wife stumbled upon a Male Clinic in our area that treats ED as well as other male conditions. This particular clinic deals frequently with patients with ED issues following surgery. We understand ED is a concern with any of the treatment options, but this comment caught our attention.
For now we ask for God’s direction in this phase. We know already what part of His plan is for us … and that is that we are to go through this life challenge with Him before us. We already have a great sense of His calling and purpose in this. God has divinely placed a number of people and resources in our path that have been and will continue to be part of our support network with this cancer. Stay tuned for details!