Jeffrey’s Word’s and Memoir – The Fishstrong Foundation

These aren’t the words of a man finally dying, but those of a man that is finally living. If I have learned anything through this all it is that life isn’t about cherishing the good experiences, it’s about cherishing all experiences. Life was never meant to be perfect. It was meant to be a journey. No matter its direction or the happiness or pain that life brings you, it is still a part of the journey. That is what makes life so great, the diversity of it all. The results of so many combine imperfect experiences are what make life so perfect and worthwhile.

-Jeff Fisher (11/26/88 – 10/24/13)

****DISCLAIMER****

Please excuse any errors you may find within this memoir. It was written by Jeffrey 2 ½ years after being diagnosed with a brain tumor and after having a stroke. We have purposefully left his memoir as it is to keep it as personal as possible. Thank you.

Jeffrey wrote this memoir in hopes that his story and his research would help others in similar situations.

FISHSTRONG

My Journey to a State of Fearlessness

Jeffrey Austin Fisher

3/18/2013

This memoir is a simple and brief description of my life, my journey through my struggles and my triumphs with cancer

Prologue: "Our greatest glory is not in never falling, but in rising up every time we fall."

-Ralph Waldo Emerson (1)

“My beautiful soul, it is not your time to die. You have much to share with this world before you go. There are many people that you will help before your time on earth is complete. You have a long journey in front of you.” These were the words of an alternative healer in Asheville that I visited, made ever more profound by the odds that strongly disproved this. I am fighting stage-3 Anaplastic Astrocytoma brain cancer. My life has been an incredible journey thus far- one of triumphs and failures, pleasures and pain, happiness and sadness, sickness and health. A wild ride filled with a wide range of emotions, experiences, and people. My reason for sharing my journey is simple; I think that stories of my experiences can positively motivate or help others going through similar situations.

The beginning of my journey

October 17, 2010, I told my mother that I needed to go to the hospital. My field of vision was blurry, to the point that that I was unable to see at all. I felt as if I was in a thick fog. My skull felt close to bursting open; l pictured the ground littered with pieces of my scattered gray matter. Despite the acknowledgement that something was wrong, my family and I assumed I was suffering from migraines, and that all I needed was a consultation and a prescription. It turns out that my journey would take me in a much different direction. That direction steered me head into unimaginable challenges, personal and community strength, and certain death.

I went to the hospital that I was born in that is located in Jacksonville, North Carolina. It is the hospital where I fought several challenging childhood illnesses in. After speaking with the same doctor that took care of me during those illnesses, he thought that it would be best for me to receive a CAT scan of my brain. Several doctors walked into my room fifteen minutes after my scan in order to discuss what they saw. “I am sorry, Mr. Fisher, you have the largest brain tumor that I have ever seen. We are going to transfer you to a larger you to a hospital that can better handle such a rare case.” My mother immediately grabbed my hand and screamed as I sat in stunned disbelief. I never thought I would wish for migraines.

The tumor was encapsulated in my left thalamus; a spot that was less than 50 millimeters from my brain stem. Even more disheartening, the tumor covered an area that was almost a quarter of my brain’s entire mass. Within twenty minutes, I was loaded into the back of a transfer ambulance in order to take the two-hour journey to Durham, North Carolina. Durham is the hometown of my least favorite college basketball team. I asked my mother to grab my favorite college basketball team’s shirt from my home before she came so that I could represent my team in enemy territory.

After things settled down in the ambulance, I began to process my diagnosis for the first time. The siren wailing, bright lights flashing, mom crying, but it’s as if I’m alone in the dark corners of my mind. White lab coats, glasses, clipboards. “Sorry son, but you have three months left to live if you’re lucky.” How is that lucky? Two days ago I was complaining about my school work and my legs hurting from work; after riding 15 miles a night with 400 pounds of drunken passengers weighing down will do that to you. Now here I am, in the back of an ambulance being rushed to a hospital in Durham, the ambulance ride being deemed necessary due to my rapidly deteriorating situation.

In the beginning, I broke down emotionally. I could not believe or understand how this could happen to me, a young and healthy individual. After I had cried my eyes dry, I eventually began to calm down and visited the dark corners of my mind. I started thinking about not receiving any treatments because the doctors told me that there was not a chance of my survival. I had enjoyed an extremely interesting life full of challenges and triumphs, pleasures and pains. I accepted my diagnosis and had no fear. I did not have time for fear. Instead of continuing my negative thoughts, I began to think about travelling the world until I did not wake up one day. My doctors had told me that I would begin to sleep more and more until the point that I would not wake up, ever again. I had some money and was hopeful that my parents would support me through the rest of the costs. The rest of my trip to Durham was filled with thoughts of adventure. I wanted to be taken to the top of Mount Everest. I wanted to see the Great Wall. I wanted to visit Amsterdam…again. Plans of these adventures began to circulate in my mind.

Shortly after I was able to settle down in my hospital room, two of my best friends, Eric and Jake entered, their faces flushed with emotion. After we discussed my diagnosis and what was to come, they began their discussion. They told me I was the most stubborn and strong-willed person that they had ever met. They told me that this has a reason. This experience happened in order to make me a better, well-rounded person as well as to give me stories that would inspire and better the lives of others. After listening to their stories and their threats (relating to the pain that they would inflict on me if I did not fight this disease with the strong and stubborn outlook that has always been at my side), I decided that it would be in my best interest to fight. If I do not have much life left to life, I am going to fight as fearlessly as I can for as long as I can.

Eventually, my friends left and I sat in my bed for the rest of the night, mentally preparing myself for the upcoming battle. The next day, I was woken up early and was immediately taken to a surgery room. Doctors were going to cut up my skull in order to take a biopsy of my tumor. Because my tumor was in close proximity to my brain stem, less than fifty millimeters, they chose to do a biopsy in order to determine what type of tumor they were dealing with. The tumor was within one of my ventricles in my left thalamus and close proximity to my brain stem-only 50mm away. The tumor gathered by my doctors was claimed to be a stage 3 brain cancer. The type of tumor cells were that of an Anaplastic Astrocytoma. After the surgery, my doctors informed me that treatments would result in unnecessary suffering that would not change the outcome of my life. After my discussions with my friends, I took this news lightly. I actually smiled when they told me this. I then informed my doctors that that was not going to be the plan. I wanted them to put me on the most effective and devastating treatment that they could legally put me on without killing me. I told them to bring it on! The doctors smiled and calmly said, “If you are here to fight we shall prepare for war.” They were curious why I had decided to put myself through excessive suffering that would result in the same outcome. I confidently informed them that it was not my time to die, because for the first time I am truly able to live in a way that I have always wanted to live.

The next day I had a shunt placed in my brain. A shunt is a tube that runs into the middle of my brain that drains the cerebrospinal fluid from my brain. This fluid build-up causes so much pressure in my brain that I had not been able to see clearly in days. While I was clearly put to sleep for this surgery, the pain that I went through days after this surgery could not be properly put into words. Doctors kept me in the hospital for several days in order to observe me in order to make sure that no infections were beginning in my brain. After they felt comfortable with my tolerance of the surgery, my doctors decided to put me on two chemotherapy drugs that I would receive once a week intravenously. Once a month I would also take chemotherapy pills for five days straight every 28 days.

My first chemotherapy gave me few, if any side-effects, which shocked my doctors due to the amount of toxic drugs that they were giving me. I was immediately sent home in order to avoid contracting any infections that were floating around the hospital. I spent my ride home slowly responding to the text messages and phone calls that I had ignored for the last week. When I first got back to my parents house, I was met at the door by my best friend, my yellow lab, Mason. I spent the rest of the night in my bed room crying with my dog sitting in my lap. I spent the next few days doing research on proper nutrition, exercise, and other practices that would benefit me in my battle. I knew going into chemo that, in order for me to maximize the effects of the chemo but minimize the side effects, I had to be physically and mentally prepared. There is a lot of research, literature, and information on everything from recipes for chemo patients to homeopathic remedies. I have compiled what I used, what worked for me, and what has the potential to be beneficial for most others going through chemo.

One thing that many chemotherapy patients experience shortly after their treatments is a state called chemo brain or chemo fog. Chemo brain is a real thing that affects most chemotherapy patients and forces a person to put much more effort in to producing even the simplest of thoughts. Instead of walking around the house completing tasks, I must now stand still and concentrate on what I was doing and trying to recall what I had just done and what I was going to do next. Chemo brain makes even the most trivial tasks challenging and forced me to develop coping mechanisms, such as keeping a pen and paper handy. I also have come to rely heavily on my smart phone and would text myself and set phone reminders.

Fear

*** Disclaimer: be sure to talk to your doctor before incorporating any of these suggestions to ensure their safety***

In the beginning of my war versus stage-three brain cancer, I was hit with a strong sense of fear. My doctors suggested that I not go through treatments, as my brain was being overtaken by this imposturous growth much too quickly to mount a counter assault. Instead of suffering through punitive but futile chemotherapy, they suggested that I go on a trip or spend time with those that I considered close to me. Make myself as comfortable as possible. All those things they tell a dying man.

After running through an emotional gauntlet, I weighed my options, which were limited at best. I could listen to the doctors, abdicate control to the professionals and let the cancer run its course, un-thwarted or I could go against their advice to give up and fight back against this cell-multiplying-mutant that’s taken my brain hostage. Instead of cowering in fear, I chose to face my cancer and to fight for my life. You are reading this because you, or a loved one has found the courage to do the same. In an effort to advise you on what helped me get through my suffering over the years, I have compiled a pamphlet of mental, physical, and emotional practices, recommendations, and recipes, peppered with personal accounts and anecdotes. I hope that this will give you ideas of ways that you can develop and bring to life your own courage.

Fear scares us in difficult situations. Fear limits our ability to think and react to external stimulus. By acknowledging the existence of fear and by knowing more about it, fear can allow us to eventually get a true understanding of the situation that we are in. Fear can cause a thorough thinking process which can ultimately benefit us in any battle that we face by allowing us to use our fears as a building block for our foundation of strength. What was once a fear can now be used as strength.

There are many other ways that a person can overcome fear. The negative effects of fear on the body include insomnia, strokes, headache, and high blood pressure among other negative effects (Be in Health Global). The most effective method of overcoming fear is to live every instance of your life in the frame of mind that you would if you knew that this moment would be the most important and meaningful moment throughout your life. If a cancer patient becomes used to a culture of fear, their physical and emotional strength can be destroyed by physical and emotional weakness. Fear is an emotion that can be easily transmitted to others. If you can control your fear, you can also help those surrounding you control their fears. This control of your fears will be intensely beneficial to you and your cancer fighting team throughout your cancer experience.

One thoroughly researched method of reducing fears is called Anchoring. Anchoring is a simple technique that works by focusing on the natural system that links feelings to experiences. As a visualization exercise, Anchoring uses the power of your imagination to meditate. This easy and effective exercise reduces stress, increases mindfulness, and helps repair the relationship with your health and body during treatment, no small feat, as the reduction of stress can allow a person’s immune system to remain high while fighting the various effects of cancer treatment (Vandermark, 2011).

In the first step of Anchoring, a person must pick an emotion or state of being. Anchor purely positive thoughts. An example of this first step starts by consciously thinking of yourself as powerful, strong, and centered. You need to feel like that you are the most popular or smartest person in the world.

Next, you need to think about a time that you felt a positive emotion or state. Breathe in the emotions that you experienced and let them flow throughout your body, into every cell of your body. When these feeling reach their peak, press another anchor that you have developed for a few seconds. Repeat to normal and then repeat this process several times (Tyndall, 2010). Ultimately, the key to managing your various emotions is to understand that you alone are responsible for your emotions. Focus on positive emotions (Segnit, 2012). When I would go through my anchoring routine, I would choose a state of complete peace. I had no outside concerns. I was simply there. With this state of being, I would mentally create an emotion or state of absolute peace and tranquility. I would then allow this state spread throughout my body. At this point, I would press another anchor, by thinking of another state. At the end of this routine, I would have no worries. I was ready to overcome whatever challenge I was about to face.

For more information on the emotion of fear and how to overcome it, refer to Appendix

Some other helpful tips:

“Resolve any unresolved emotional issues;
Touch your care feet to the earth every day;
Breathe deeply (like a baby);
Get 30 minutes of natural sunlight daily;
Get 30 minutes of moderate exercise daily;
Live with an attitude of gratitude;
Practice loving yourself—the way you are;
And,
Let everyone else be the way they are” (Boone)

Fear is an emotion that controls us and ultimately, limits our ability to achieve the things that we want to. It is okay to be afraid, but cancer patients cannot allow this fear to control them. Instead, cancer patients must control their fear and use it to push them farther than they ever thought that they could ever go. Throughout my experiences with cancer, I relied on my fears to motivate me to take control of what I could, mostly my emotions. I realized that after death is the unknown. That being the case, I much rather be alive and scared than dead and emotionless, lost, and forgotten.

Physical and Mental Fitness

Have your doctor approve each move in the yoga routine before the exercises are practiced. There are many moves that should not be practiced by patients with various form of cancer. For example, considering the fact that I have brain cancer, every time that my head falls below my waist, my vision is lost and I become dizzy. Therefore, yoga moves that involve lowering your head past your heart need to be avoided. Additionally, I had to avoid tightly bound holds because of my susceptibility to the development or movement of blood clots. For websites dedicated to yoga moves that are not only beneficial to cancer patients, but are beneficial to everyone, see Appendix A. Yoga has significantly reduced my stress levels, and I have come to depend on the relaxation and release to keep me balanced, mindful and more at peace.

Along with yoga, walking is another extremely simple, yet important exercise. Walking benefits cancer patients in several ways. First, walking is a low-stress form of physical activity that most cancer patients can do. Many cancer patients have issues with blood clots and walking is one way to help avoid clotting. By walking outside, cancer patients can receive their needed daily doses of Vitamin D.

Vitamin D is beneficial to everyone because it enhances a person’s energy and mood by releasing endorphins. Vitamin D also helps the body reduce inflammation that is caused by treatments. At the same time, it also improves immune function and muscle strength. The proper absorption of Vitamin D from exposure to natural sunlight helps promote calcium absorption (Dr. Mercola, Mercola.com). Other sources of vitamin D include foods like fatty fish and antibiotic free, range-free, brown eggs. These fatty acids will also benefit cancer patients in other ways, including the absorption of protein and Omega-3’s. Protein and fatty acids are needed to coat the body in order to avoid ulcers that can be caused by chemotherapy. Omega-3’s and fatty acids also have many other health benefits for the body. Additionally, the consumption of all-natural, unsalted nuts boosts person’s levels of proteins and fatty acids. Along with the consumption of high protein foods, the consumption of leafy greens allows the cells of a person’s body to work more effectively. For more information on the benefit of physical fitness and a balanced diet, see Appendix A.

Along with my physical fitness routine, I used my natural stubbornness as a coping mechanism for dealing with the constant fear that I was experiencing. Instead of rolling over and letting this cancer kill me within months of my diagnosis, I chose to refuse my doctors predictions of death in order to cope with my devastating situation. I would constantly remind myself that I am stronger than any emotion that I can produce and I can overcome anything I fear. At this early stage of my illness, I was finally equipped for battle. By developing this fearless mind and strengthened body, fear was no longer my enemy. It was now time for my disease to fear me. With the absence of fear, I was quickly able to develop a sense of positivity.

Positivity- The State of Being Positive Even When There Seems to Be No Hope

Without fear consuming my mind, I was able to fully focus on my health in a positive manner. A strong mind and more importantly, a positive mind is extremely beneficial to everyone, but especially to cancer patients. The health benefits of positivity include an increased possible lifespan, a strengthened immune system, and ultimately, the ability for more effectively combating this disease. Additionally, a positive mindset can allow you to more easily overcome disease related depression and lower blood pressure (Shaw, 2012).

In the 2 years since my diagnosis, I have had forty radiation treatments, over seventy chemotherapy treatments, a stroke and a hemorrhage, double lung embolisms, blood clots in both legs, a shunt placement and removal…. catch your breath and continue reading because we are not done yet… the placement and removal an IVC filter, and two craniotomy’s (when the skin on your skull is cut open and spread, the reachable tumor is removed and your skull is placed back into its original position). My first craniotomy took 8 hours and my second craniotomy took over 18 hours due to the tumors close proximity to my brain stem) (John Hopkins Medicine).

A positive mindset will take you farther in your illness experience than anything else will. Let friends, family, or a loved one serve as one of your reasons to remain positive. Most importantly, you must find your own reasons that are within yourself to remain positive. Regardless of what you are going through, there is ALWAYS a reason to remain positive, as your mental state is one of the few things cancer patients are able to control.

Remaining positive can allow you to stretch your limits. It allows you to withstand more suffering and pain in order to achieve your ultimate goal, which is being cancer free. Continue doing things that you have always enjoyed. This state of normalcy will allow a person to better cope with the suffering that they are likely going through. Be sure to consult your physician on all activities in order to not interfere with treatments. You also can find ways to involve your friends and family into your daily routines. This state of support, friendship, and normalcy will allow you to stay positive even though you are scared and hurting. The following work on positive emotions will also give you some ideas on the benefits of positive thinking (Lyubomirsky, Sonja & Sheldon, Kennon M. 2006).

Moments of weakness are inevitable. If you have a negative, woe-is-me attitude, you’ll do the treatments, but won’t go above and beyond. Experiencing this first hand, positivity is the difference between being motivated to do research to find more information on how to survive, and just accepting what is handed to you. Doctors do a lot for you, but you still have a large responsibility; after all, this is still your life that you are fighting for. With battling cancer, as with any war, it is vital to have an army to back you. It is important for cancer patients to have a support system, whether that includes family, friends, or an online forum, having an outlet to voice your fears, vent frustrations, and to receive motivation and encouragement is extremely important.

ALWAYS REMAIN POSITIVE. There have been many moments through my journey in which I simply wanted to give up. I wanted to die. Quickly, I realized that life was never meant to be perfect. I realized that if this was the journey that I had to take, I would do it with a smile on my face, while opening myself up to the love and support of family and friends, and allowing them to re-motivate me. Additionally, most communities have support groups for cancer patients and even for the family members of cancer patients. These networks help build a person’s emotional strength and boost a person’s positivity. The appendix has links to several of these groups, but additional research should be done by you personally.

Without fear consuming my mind, I was able to fully focus on my health in a positive manner. I was able to do further research on workout routines and beneficial diets for cancer patients. The health benefits of positivity include an increased possible lifespan, a strengthened immune system, and ultimately the ability for more effectively combats this disease. Additionally, a positive mindset can allow you to more easily overcome disease related depression and lower blood pressure (Shaw, LIVESTRONG.com). By boosting your emotional strength, you will boost your body’s ability to combat this illness.

Fearlessness aka FISHSTRONG- The absence of fear in the face of insurmountable odds.

One day I made a status update on my social networking website that said, “FISHSTRONG- The absence of fear in the face of insurmountable odds.” A former football coach of mine then printed this saying on t-shirts and distributed throughout my community. In the beginning of my journey, I was afraid and had no hope. Eventually, I develop a state of fearlessness and named it fishstrong, the absence of fear in the face of insurmountable odds. My state of FISHSTRONG was my driving force, thereafter. This state has helped me through times in which anyone else would have given up due to the constant and excruciating pain that I was experiencing. This state has shown the solidarity of my entire community. I hope that this movement can be inherited by other communities and cancer patients in order to help cancer patients throughout the world. The support that this movement has given me cannot be properly explained in words, but I do know that this type of support is what picks me up on the days that I am simply too tired to continue fighting my disease.

I used my fearlessness to further strengthen my already well toned emotions. Well toned emotions are a necessary state for everyone, but especially those that are being challenged. As Atharva Veda once stated, “Fearlessness leads to immortality,” (Universal Society of Hinduism, 2013). This does not mean a state of physical immortality, but instead the permanent presence of your character. This state of fearlessness allowed me to approach every situation and every emotion with the thought of indestructibility. I knew that I could die physically, but the remaining influence of my spirit would live beyond my physical state. The absence of fear even when there is no hope is the reason that I am alive and able to write these words. Take what I have shared with you and use it as you will, but do know that there is always the chance to live another day. Fight for another day, every day, until there is no longer a breath in your body. Use your own emotional strength and the hope for another day in order to see another day. Your passions, your dreams, or your friends should be more than enough emotional strength to pull you through. You must think of what is important to you and you must have this push you beyond your limits.

My cancer experience has been torturous, but I am grateful to have the unfortunate experiences that I have had. My experiences have turned me into a person that I am proud of being. If I was to die today, with my last thought I would know that this journey is one that I am proud to have experienced. If I am able to live another day, I will use my experiences to better the lives of not only the ones that I love, but also the lives of all people. My life thus far has been a unique experience that I am proud to have lived. What a journey my life has been. I cannot wait to see where my journey will take me next.

Where your battle with cancer will take you is unknown. Despite the emotions that the unknown can bring, you must not be afraid. Do not forget to get a second opinion, be open to alternative forms of healing, like meditation and holistic practices. Always be sure to do your own research and always get a second opinion. By taking the time to search for additional resources and information, you can discover treatment options or recipes, and hopefully realize that you are not alone in your fight. I know that there is an endless amount of reasons to be afraid or to give up, but you can beat this disease. I was told I would die within months of my diagnosis. I have proved those statistics wrong and have since graduated college and am now doing work for The American Cancer Society. I am still battling cancer, but refuse to remain idle. As Jim Valvano understood, “cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever” (JimmyV.org).

Works Cited

Be in Health Global. 2011. How Fear Affects The Body. Retrieved 24 February, 2013. http://www.beinhealth.com/public/generalarticles/how%20fear%20affects%20the%20body

Boone, Wanda. Personal Interview, December 17, 2012, Wanda’s Center for Well Being, Garner, NC.

Dr. Mercola. 2012. Are You Making These Sunshine Mistakes? Retrieved 22 February, 2013. http://articles.mercola.com/sites/articles/archive/2012/09/29/sun-exposure-vitamin-d-production-benefits.aspx

Goldstein, Rabbi Niles Elliot Goldstein. 2009. The Challenge of the Soul: A Guide for The Spiritual Warrior. Trumpeter Books. Boston, MA. Shambhala Publication, Inc. (1)

Johns Hopkins Medicine. 2012. Johns Hopkins Brain Tumor Center. Retrieved 18 December, 2012. http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/brain_tumor/Patient_Education_Binder.pdf (4)

Lyubomirsky, Sonja & Sheldon, Kennon M. 2006. How to increase and sustain positive emotion: The effects of expressing gratitude and visualizing best possible selves. Retrieved 18 December, 2012. http://greatergood.berkeley.edu/images/application_uploads/sheldon-SustainPositiveEmotion.pdf

Segnit, Seymour. 2012. The Secret to Overcoming Fear of Step-Father. CTRN. New York, NY. CTRN Life U LLC. Retrieved 16 December, 2012. http://www.changethatsrightnow.com/communication-fear/how-to-overcome/. (2)

Shaw, Jerry. 2012. Health Benefits of Positive Thinking. LIVESTRONG.COM. Retrieved 15 December, 2012. http://www.livestrong.com/article/75627-health-benefits-positive-thinking/. (3)

Tyndall Investment Management Limited. Greed and Fear: Anchoring and aversion to ambiguity. Tyndall Am. Retrieved 16 February, 2013. http://ebookbrowse.com/tam-greed-fear-anchoring-aversion-pdf-d225539017

Universal Society of Hinduism. Atharva Veda Quotes. Retrieved 16 February, 2013. http://www.famousquotes.com/author/atharva-veda/2

Vandermark, Traci. How Does Stress Affect The Immune System. LIVESTRONG.com. Retrieved 16 February, 2013. http://www.livestrong.com/article/22689-stress-affect-immune-system/

Appendix A.

Fear

http://www.livestrong.com/article/15078-overcoming-fears/

http://www.inc.com/geoffrey-james/how-to-conquer-fear-4-mental-tricks.html

http://www.inc.com/geoffrey-james/how-to-overcome-fear-5-tricks.html

Most importantly, make your fear useful to you:

http://www.newsonhealthcare.com/the-physical-and-mental-effects-of-fear/

Yoga

http://www.livestrong.com/article/368069-yoga-poses-for-cancer/

www.cancer.org/docroot/ETO/content/ETO_5_3X_Yoga.asp

www.iayt.org

www.bksiyengar.com