(First in a series)
Over the next few months, we’re proud to share with you our friend Paul Bohannon’s story. His story is one of grit, of persistence, of not taking no for an answer. Eight years ago, Paul was diagnosed with prostate cancer, and given 6 months to live. Six months! Yet, here he is to tell his story, eight years later, cancer free. How did he do it? What was his path? What did he learn? What can you or a loved one learn if you are going through a cancer diagnosis? We invite you to follow Paul’s story each month, starting right now.
By Paul Bohannon
The purpose of these articles is to frame my very personal approach to my cancer diagnosis in the hopes of helping even one other person. The voice of these articles is targeted toward the patient; however, I will also point out a series of key strategies for all those impacted by cancer.
As a reader, you’re likely in one of two distinct groups: you were diagnosed with cancer, or you have a loved one, friend, or colleague who is dealing with cancer. Perhaps you’re trying to figure out how to come to terms with “The Diagnosis.” You’re either trying to make sense of it all for yourself or trying to be there as a support mechanism to someone you love.
My “problems” started when I was 39 years old. I had started training for a half-marathon and was running all the time. I was in phenomenal shape. . . or so I thought. After I finished the half-marathon, I had my first brush with what I found out later was the cancer invading my urinary tract. I went to relieve myself and it felt like fire was escaping.
And thus began a truly disappointing two-year search into what was causing my pain. Time after time, doctor after doctor, I was prescribed extremely high-powered antibiotics and told to drink water instead of my morning coffee because, of course, I was “too young” for prostate cancer.
After two years, I finally found someone willing to dig a little deeper.
After one such breakout of painful urination I went to a standalone emergency clinic. A young nurse practitioner performed a digital rectal exam, looked at me and declared that my prostate felt very abnormal and I needed to see an expert; I needed to see a urologist right away. But wait – the first three doctors were all urologists.
A New Plan
I sought out a new urologist, but this time I did something dramatically different. You see, my sister-in-law is and was at the time a nurse. She and I made it very clear that we were not allowing the doctor’s view of my health to be based solely on my Prostate Specific Androgen (referred to as PSA) tests, size of prostate, ability to urinate. We insisted on further tests. My new doctor – and quite honestly the man who saved my life – started a process that can only be described as insanely fast and scary.
Within a week (Christmas Eve Eve of 2012, to be exact; I was at a tradeshow), the doctor called me. It was a Sunday. He gave me the result of my biopsy: all twelve of my biopsy results were positive for cancer.
He explained that prostate cancer is graded on a scale called the Gleason Scale. They call it staging. Like all cancer “measures,” it gets very technical. (Read more about it at https://www.cancer.net/cancer-types/prostate-cancer/stages-and-grades.) In layman’s terms, he told me that if my cancer was a canine, then it was the equivalent of starving wolves circling my campsite in midwinter, I was weaponless, naked and . . . oh, it was pitch black at night. Basically, I was screwed.
The Emotional Rollercoaster
I made the same first mistake most cancer patients do: I asked the doctor, and would not let him off the phone, until I got his answer as to what was my life expectancy. He said at best six months, and he needed to operate within a week. Six Months!
In future discussions we’ll dive deeper into the tenets I used to formulate my approach to cancer, but for the sake of this article, we’ll gloss over these in the interest of laying a foundation. My first reaction was intense anger. I was angry at my parents for giving me weak genes, angry at my work, my loved ones, myself, and the “stupid doctors who couldn’t diagnose my cancer” (although the self-anger came after about a week). The anger gave way to profound sadness, then pity, then fear of death, fear of what I would miss, fear of my legacy – or lack of legacy at this point. Eventually, the emotional rollercoaster returned to anger. In fact, my anger was so intense, I was impossible to interact with.
During this hatred/ anger period, something amazing happened, and it’s why I say cancer was a “blessing.” I found Suzanne Somers’ book “Knock Out.” I read it in one evening, and what it did for me I hope to pass on to anyone reading this. It gave me a glimmer of hope. Hope that six months was not accurate, hope that I would live, hope that I would . . . I don’t know, survive – maybe?
Finding an Advocate
I would like to start by addressing the loved one/ interested party. Unfortunately, unless you have the cancer of the affected person, you will never understand him/her. The greatest challenge most cancer patients have initially is coming to terms with those around them. We are emotional beings and often project our fears, concerns, and worries on the cancer patient. You must suck it up and change your approach immediately.
If you are in a position to take on a very focused and specific role for your loved one or friend, then you’ll need to do a deep dive into the discussion about becoming the “Advocate.” The definition of advocate is a person who publicly supports or recommends a particular cause or policy (source dictionary.com).
As the advocate, what you need to ask yourself goes much deeper than supporting a policy or approach. To be a truly effective advocate, you need to speak with the healthcare professionals, do the online research, get the books, read, study, learn. Every cancer, every situation and every person are different. Your goal is to constantly absorb and intake, document; and journal the details as this is the best assistance you can give.
As an advocate you have one of the toughest jobs (aside from the patient) as your goal is to shield the stresses of life and help find as many resources as possible to help your cancer patient. You also must keep your emotions out of the way. If they cry, get angry, get upset, you need to support them in this emotional journey which can be visible or internalized. Your goal is to encourage, refer, research, support, and be there. They are your patient (I am intentionally using that word because like a professional you must approach the goal, treatment plan etc with one of integrity and swear to always think in the best interest of the patient). Doctors swear a Hippocratic Oath to treat the sick to the BEST of one’s ability. While you aren’t developing the treatment plan, you are a critical part of supporting the patient. We’ll dig into this more later.
If you are the one dealing with cancer, then you need to find someone like this. Often, your advocate may not be someone you know. They could be a nurse, doctor, naturopath, chiropractor, priest or other advisor. If you are fortunate enough to have a family member, spouse, child, friend or Neighbor who is willing to help in supporting your plan – you are fortunate. Remember that. Maybe your trusted person is a collection of people from different walks of life or interactions with your plan. The goal of this person, from the patient’s perspective, is go allow You to find a sense of trust, belief and Hope in the process.
The goal of this series of articles is to help you find the variables you can control. Unfortunately, when it comes to cancer, you will follow its lead. That being said, as you will read later, I was given six months to live and that was almost eight years ago. People often ask me how I do it. Well here comes my secret – I’m a huge believer in the power of the mind over the body, the power of the mind to influence and heal the body. Reference (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3052954/). (Footnote) I will refer to the National Institutes of Health often in my articles because its one of the best repositories of research in modern times and while I often find it a bit biased toward “Traditional” approaches, it is a fair repository of amazing minds, thoughts and research.
According to “The Impact of Psychological Stress on Wound Healing: Methods and Mechanisms” research produced by Jean-Philippe Gouin and Janice K. Kiecolt-Glaser, the mind can positively or negatively impact the healing process and wound recovery of the body.
The rest of what is outlined in this article is basically about how I established my foundation, but it is imperative to realize that the depths of emotional response are overwhelming. To the casual observer it may appear that the cancer patient is perfectly fine on the outside, but inside it is a wasteland. It would be irresponsible not to acknowledge how alone you are when you hear the words, “you have cancer”.
You are so alone that death is scary and welcome at the same time. Up becomes down and visa versa. The depth of fear is so extreme it cripples most people and then the “process” of healing takes over. Please take the time to read through this article, and at minimum take the first step outlined below.
Later, I will outline how this helps you, but as someone who has lived way beyond the expected outcome, I am asking you to trust me, for now at least. You will see that I did not do these things well in the first round and I almost voluntarily destroyed myself in the process. This is the blessing part of my cancer – I evolved, matured, and came to a balance which has given my body what it needs – balance.
Set a Goal
Sounds trite but let us discuss the actual objective you have. For example, are you interested in length of life or quality of life? The volume of variables and impact of these variables varies from person to person. I can only relay what were the defining guidelines I was given. As a statistics major from the University of Washington in Seattle I learned one extremely valuable lesson – question data – ALWAYS.
I initially had no clue. I wanted to survive, maintain a healthy sex life, and did not want to have to pee into a bag. From my surgeons’ point of view, they ranked my treatment priority in terms of longevity, urinary control then sexual performance was last on the list. We agreed on a goal of longevity – stretching out the six months sentence into something longer.
What I realize now but failed to grasp then was that my doctor and I were on different ends of the same scale. I began to evaluate all options based on this very basic goal of longevity, urination control, sexual function (for me sexual function was non-negotiable). It was not until after I had decided to schedule my surgery that I realized I need to set a goal for myself. Setting a goal really simplified the rest of what happened next.
Not all cancers are based on a linear scale and for each patient its important to come to terms with this simple point. Without this foundation the rest does not matter. I remember I met a woman in her thirties who had stage four colon cancer and I asked her what her goal was. She said she could not handle the pain from the treatment, so she wanted to die.
It did not make sense to me, why wouldn’t you want to fight, why give up? You were too young, too strong. She told me fear of death was not her motivation, but she was worried about her parents who were both older. How would they survive without her help? She felt the outcome was inevitable and could not go through the pain anymore- she could not think of her parents through the pain she was suffering.
Her view shined a light on something I was completely denying. We all have different tools, strengths, motivations, and backgrounds. The most important part of setting your goal for treatment is to take a real inventory of yourself. Writing this down and having the extremely difficult conversation with your advocate is an important first step.
The discussion of your goals helps frame the conversations with your advocate, Treatment team and family members. Omitting the step of establishing a treatment goal leads you down a path without control, influence, or focus.
One more point about Goals which I’ll dive into below; Goals give you an internal answer to the “What if” conversation that will plague you the rest of your life as a cancer patient/ survivor. “What if this pain in my back is metastasized cancer? What if my treatment fails? What if I don’t see my grandsons’ birth?” Your goals are there to give you focus and purpose. Give you a plan you can influence and role in your health, healing, and remaining life (hopefully well beyond Cancers impact).
Find an Advocate
The second objective (and perhaps simultaneous to the first objective) is to identify someone you can offer your trust – someone to help do the research. You should avoid google, internet articles and online references. There is a lot of tragic detail available online which will horrify you, overwhelm you with data and confuse you. By spending energy focusing on this and self-diagnosing you are empowering the brain to plant land mines for your soul. Your advocate’s goal is to help navigate the what’s real and vet all approaches and ideas with your treatment team, help you develop a treatment plan. More on this below.
As a cancer patient it is important that you realize – You are not alone, should not address this alone and need to build a support system. There are thousands of great, low or no cost resources to help people like you, people like us – who are trying to come to grips with our mortality.
I was the first person I knew (from any part of my life) diagnosed with cancer. According to www.cancer.org over 16.9 million Americans are living with cancer. Let’s reread that – LIVING with cancer. MOST of whom were diagnosed with cancer many years ago and have no evidence of cancer (source: cancer facts and figures 2020.pdf). By even referencing this I am violating the rule of going online, but it is important to frame your mindset about data that matters.
Here we go – Data stuff – 606,520 Americans are expected to die or have died of cancer in 2020. That is a subset of the 16.9 million Americans plus the 1.8 million who were diagnosed this year. What that means is that while cancer is the second most common cause of death in the US (Sadly heart disease is first). Ok scary data, right? I am freaking out just reading that.
More Data stuff – what that number above fails to count is the improved technology and our knowledge of how to test for, detect and identify cancer. Let us analyze this data in terms of deaths per diagnosis or cancer death rate. In 1991 .002% of diagnosed patients died on average that year. In 2017 that number fell 29% to .0015%- mostly driven by drops in the four most common cancers – lung, colorectal, breast and prostate cancers.
Last Data stuff – the silver lining – the experts measure cancer in five-year windows. Since the early 1960s the survival rate for whites raised from 39% to 70% and among blacks from 27% to 64%. Here is the absolute kicker – the longer you live, newer your diagnosis etc the more the data starts to favor your odds. So in effect a research study done in the 1960’s is basically outdated today based on life expectancy etc. In my case, the probability of living has gone up by a factor of 20 (meaning if I were to get my diagnosis today my life expectancy is in terms of decades not six months).
Establish a Treatment Plan
This is very complex because you will get ideas offered to you from your doctors, friends, other patients, and anyone else with an opinion.
As it turned out, my treatment plan happened in two phases. I would like to refer to them as Round 1 and Round 2. I took the mental approach that I was going to defeat my cancer as described above. My round 1 I won because we removed the tumor, which worked. . .. for a while. Back comes cancer and in Round 2 I was forced to focus my energy tackling a very adaptive opponent who figured out how to sidestep my initial plan and show up in my bones and spine. Not to worry though, because revised advocates helped me develop a new treatment plan and we are in Round 3 of a 12 round championship fight.
Each doctor visit (oncologist, urologist, naturopath, pharmacist) began with a series of questions, presentation of key concepts or ideas we uncovered, and we discussed viability, impact, and options. At first, I listened and tried to remember.
It became clear I was shell-shocked and could not be the point person. I asked my advocate, my sister-in-law, to come advocate for me. Katie (my amazing sister-in-law) was a STUD. She challenged everything, as I started to write down questions. She started off on the offensive and the list of Doctors narrowed as we separated those who could and would game plan with us vs those who were agenda driven or dogmatically focused.
My initial plan was removing the tumor because it was so massive, and the cancer had escaped into my urethra and bladder which was the basis for my six-month life expectancy. I was so angry with the whole medical community because for two years something was very obviously wrong and because of my age no one thought to look inside my prostate. I was told my test scores were too low to be cancer.
I was so furious that my initial plan was a war plan. I combined this with the most aggressive diet I could imagine – raw vegetables and VERY limited fats. i ate avocados and put coconut oil in my coffee, did coffee enemas, took daily saunas, ate raw vegetables, and worked out to the point my body fed itself from my muscle tissue. it was an exhaustive plan, but what my brain needed. this was war and i was prepared to destroy anything related to cancer. it was important that i focus on attack as I am a fighter, and I needed an offensive and defensive plan. I had to actively participate, to train, to exhaust myself doing something.
At the time, if I felt if the doctor was not able to embrace my approach or wouldn’t answer the question “What would you recommend outside of this plan?” I would leave the appointment immediately and find a new doctor. I know this is a controversial approach, but my mindset was that a singular focused approach that narrowly addressed a piece of the cancer would not work. I was toxic, cancer was about to win because my mind was twisted around this notion of kill or be killed. I was angry and alone (despite an amazing and loving support team which I was to blinded to see).
At the core, I had sought out two different types of doctors. the first was a urologist which is a surgeon who focuses on surgery stuff in that general area. the second was oncologists who use drugs, radiation, and chemicals to knock out the cancer through a combination of focused and system-wide approaches. Both treatments come with their benefits and consequences.
One additional point I’d like to make here is the science, approaches and research in these fields are dramatically advanced beyond where I was in 2013. I mentioned earlier that anger was one of my immediate responses and no one got a higher dose than my treatment professionals. I became a caged animal. I was a caged animal and when the treatment plans were at logger heads it helped me realize something very important.
Doctors are humans. Humans rely on their training, experiences, outside influences, education, peer groups, pharmaceutical research; and develop their approaches to cancer treatment. You would not ask an oncologist to perform surgery or a surgeon to radiate your cancer. I was presented with two dramatically different plans and had no clear idea on which was better or how to tell.
I was extremely lost as to where to start my treatment. My first oncology appointment was with a practice in Seattle who had a naturopathic oncologist and traditional oncologist on staff. in my consultation i learned to ask each person what they would recommend in addition to the treatment plan. Was there anything I should do, eat, try to augment a treatment plan. Later I refined the question as follows, “If you were me in my situation, what ELSE would you do?” The naturopath and I had a lengthy discussion.
I love and respect all the professionals i engaged through my plan, many of whom I have outlived. To help illustrate how to build a treatment plan for yourself/ your patient I am going to give a very specific example. By no means am I creating this as a recommendation for treatment.
The naturopathic oncologist mentioned a dietary supplement and several other basic things to help with my cancer approach. I subsequently met with six other medical professionals from different clinics and had the opportunity to meet with a traditional Chinese doctor while traveling in Seoul Korea.
Every doctor I met subsequently was asked the following question, “My advocate and I have done research and it is recommended I add these things to my treatment plan – what are your thoughts”. I wrote down their opinions at that point. I journaled what was said, and these details were shared with my advocates. They cycle of developing my plan emerged.
Here is the point at which I wished I had started building my treatment plan. The conclusion I came to was look at where the research and evidence sits on a question at this point in time. For example, is the data or evidence in support of or against adding a specific supplemental treatment plan? Validate/ contradict it with your healthcare professional. Rinse and Repeat.
You and your advocate are to assimilate a combination of data inputs into a plan that supports your goals. Are there things you can safely add to your plan and do you think they will work in helping you achieve your treatment goals.
To sum up this point amazingly, I’d like to recount a conversation I had with Dr. Anthony Pham, my current oncologist and one of the wonderful people at www.compassoncology.com in Portland, OR.
Paul: So, I take modified citrus pectin, CBD, melatonin and a host of supplements.
Dr Pham: Ok, I don’t see any conflicts or contraindications with the treatment plan we’ve discussed. Do YOU think they are helping you with your treatment?
Dr. Pham: Good, keep doing it.
Organize Your Affairs
If your cxpert can/ will help get guidance otherwise seek those you trust to help you put everything in order. Your goal here is to eliminate stress and worry. This point sounds most simple, but the last thing you need is to stress your mental facilities. Simplify.
Plan for the worst, plan for the best, set goals for the best outcome and do everything you can to achieve your goals. Follow your treatment plan as best you can and get the what-if scenarios under control.
Part of organizing your affairs is to have the hard conversations with your loved ones about a life without you. It is challenging and while no one wants to do this it is a very important part in you’re and their life. Too often people do not get a proper chance to say their goodbyes. Do it, if you live beyond then guess what you both can realize how much you feel about each other.
Also, by finalizing any outdated affairs helps to relieve the scary thoughts you may have to entertain down the road (regardless of cancer outcome). Only thirty-two percentage of Americans have a will or estate plan in place. The tragedy here is by the time this becomes urgent and important you may not be in the right state of mind. There are great online resources to allow you to do this part for cheap and correctly (legally binding).
Finally, you need to declutter your life. Part of this is getting rid of any relationships that are negative. I know this is harder said than done, but at least through setting up your affairs you can kick these concerns down the road. It is important if you need help to seek it professionally or through one of the several sources online.
Focus on Healing
OK now that the planning is all done, and you have an advocate to deal with the doctors and the research. It is time to do your ONLY job.
You have a single job – get better, help your body overcome the cancer or adapt to living with the cancer. This means as much as you can afford (emotionally, mentally, physically, financially) to strip away from your life the better. I know this is a massive ask on all levels but let us break down some simple tasks.
At night when you lay your head on the pillow and the emotional rollercoaster starts to kick in it is imperative that you distract the mind. I found that meditation was immensely important as there are a couple of key things you can and need to control immediately. Meditation or prayer do a couple of amazing things to help the brain (and body) to heal. The first thing is you can pause on the stress button. Secondly, you actually achieve a state of calm and focus. Third, and possibly most importantly you start to connect with hope, faith and belief in yourself.
I’m not a religious person, but I know it’s important to many and most importantly it’s important that you make peace with your possible outcome – death. For many, prayer and meditation are the moment where you can go inside yourself and understand what are your fears and concerns.
Keep a journal by your bed and as soon as these pesky “to-do” items show up – write them down. Then start over. Start your prayer, meditation over. Keep doing this until you feel relaxed. It is the most important part of your treatment you can control – reduce your stress, give your body the chance to heal and calm down the phytochemicals your brain is producing.
According to the National Institutes of Health https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4026979/ the brain is an amazing part of us that has the ability to help us heal, rebuild and repair. While we’ve been studying this impact for the past forty years, it is important to understand that the Western approach to medicine was developed by Descartes’ reductionism/ dualism theory. Without going down a rabbit hole – let’s just say that modern science and treatment are based on all the ideas that pieces of the human body are part of a “machine” or system that, when taken apart and studied, one could understand. For example, how a heel pivots isn’t part of the cardiac/heart system. These pieces were then reassembled, and we learned catchy little phrases like “the knee bone is connected to the thigh bone.”
Be Open to a Broader Approach
Again, the goal of this article isn’t to debate; rather to introduce broader ways to approach ones health and treatment. In the 1920’s, Walter Cannon revealed the connection of different functional systems on one another – for example stress and our adrenal systems. When you’re in fight or flight mode you are “Draining the system” or causing it to run at a higher level. Similar to our cars, if you are constantly pushing hard on the gas – the vehicle covers less distance. (Reference -https://ndnr.com/mindbody/mind-body-medicine-its-history-evolution).
Ayurveda is a medical practice started in India over eight thousand years ago. It has been coined as the original medicine and believes in three basic principals: Movement, transformation and structure. The top two forms of Ayurvedic medicine are meditation and Yoga – basically that by moving, relaxing and focusing on the inner parts of yourself, you can help unleash the brain. I want to be really clear on one point. By no means am I suggesting someone move to India and give up on traditional medicine or stating that it is even a viable option because everyone is different. The goal of this article is to give you a way of viewing your approach to cancer treatment from a variety of angles. To steep on the fact that maybe you’ll need to take some innovative approaches or combine them with your treatments. The main point here is that there are some basic variables you can control without causing any harm to your treatments – learn to relax and connect with the inner you. Do this daily, often multiple times a day. Make this time sacred.
I used to spend twenty minutes in the parking lot of my oncologist with my eyes closed and I thanked the universe for the opportunity to undergo my treatment. I told myself that my treatment was medicine, and my body would allow the treatment to do its work. I told myself that this was going to be an amazing experience and that the people I would meet were saving me.
Break it all Down
Start thinking about your world, your problems in a compartmentalized approach. In his book, “How to Win Friends and People Too” Dale Carnegie introduces a concept called “Living in Day-Tight Compartments.” While I no longer work for the Dale Carnegie Organization, I would absolutely recommend a course like this for anyone suffering with cancer. Here’s why: In this course you learn to address your deep inner fears, build a better you. There is a lot of “debate” as to the cause of cancer or its catalysts. I’m a strong believer that causation is a factor, but the inner you – the part you can control – is a key contributor. These types of courses push you outside of your comfort zone and help you to come to terms with your inner self.
If you don’t have the means, don’t worry. There are a lot of forums for specific cancer patients where the focus isn’t on getting peer-review-approaches to curing your cancer, but to give you the support you need.
Aggressive Pendulum Swing:
First, I want to give you a glimpse into how this brain of mine operates. I had to find an outlet for the anger, so I hired a trainer and I spent 5 hours a week in the gym. During this process I lost 75 pounds and actually ended up looking like I had cancer.
Attack the Data – I have a degree in statistics, so I dug into what statistics matter most.
Paul Bohannon lives in Portland, OR where he enjoys kayaking on the Columbia, hiking through the Columbia Gorge and sitting around the fire with his family.