Author Archives: epidermoidbraintumorsociety

For this month, Brain Tumor Awareness Month, I am writing about the issue of awareness and what it truly means to be aware.
The month of May is Brain Tumor Awareness Month, which is one of many months in our society. We have Black History Month, Breast Cancer Month, and LGBT Month, among others.
But what does it mean to be truly aware? I think, too often the reaction to hearing of this month’s observance is, “Really? Interesting.” (In a flippant manner). Or if someone wants to go a step further, the response may be, “Cool! I know someone with Breast Cancer”, or “I know someone Brain Cancer.” But is that true awareness? Is that what is meant when a whole month is devoted to the subject?
I must admit that in medical school, Brain Tumors was a topic that was only taught as part of another topic with maybe 10 minutes of lecture time devoted to the condition. We were taught of only the most deadly Brain Tumor Cancers, numbering maybe 15 afflictions. Prior to my surgery, I had never heard of Epidermoid Brain Tumors. I’m sure Neurology or Neurosurgical specialties study them more in-depth, but even in medical school we did not learn about Brain Tumors in much detail.
Merriam-Webster defines aware as having or showing realization, perception, or knowledge. Simply knowing of Brain Tumor’s existence does not fulfill this definition.
To do this month justice, we ought to delve deeper. For me, this means learning about more than the 15 Brain Tumors taught in my medical school. For many of us in this group, we either have a loved one with an Epidermoid Brain Tumor, or have been diagnosed personally with an Epidermoid Brain Tumor. But I contend that we should take this a step further and try to learn more of Brain Tumors. Take 10 minutes out of your day to read an informative article on the topic. Even though I have been afflicted with a Brain Tumor myself, I am going to devote more time to learning of the condition and its vast implications. But learning of the scientific facts of the condition is not enough; as I mentioned earlier, most of you are incredibly privileged to be, or have someone in your life with this disease, knowing about a topic is more than knowing the facts of it; broaden your knowledge by feeling the experience: ask someone you know about their condition and how it affects their life.
This month, I urge you to take time to learn more. This way, when someone says to you, “Did you know it is Brain Tumor Awareness Month?”, while your reply might be a passing, “yeah”, now you will be more informed.

My hope is that this month does not become a mere side note, but an event that makes you change your realization, perception, and knowledge of the topic.

Fear is defined by Merriam Webster as to be afraid or apprehensive.[1]  But while we know how to define fear, where does it come from?  The question of fear and its basis is an important one.  But when I thought of it more, the answer became clear: we fear what we do not understand.

One only needs to look at countless examples from our history to see this: before the Wright brothers mastered the art of flight, flying was seen as not only an impossible endeavor, but also one that ensured death; before 1968 it was seen as ludicrous to even attempt an unconventional method for high jumping.  Then came along a man by the name of Dick Fosbury who revolutionized the high jump on the way to winning a Gold Medal.[2]  My point is that difference can lead to a lack of understanding, which begets fear.

I have experienced much of this in my own life: growing up Asian in a primarily white neighborhood led to some (but not many) misunderstandings and fear.  I played tennis growing up and was once asked by an opposing team member, “how I could possibly see the court with my slanted eyes?”  This lack of understanding is amplified now with my current condition as most who come across me are unsure what (or what not) to assume.

For you, does being told that you (or a loved one) have a ‘brain tumor’ scare you?  Perhaps it’s because all we know is that brain tumor = bad.  Maybe if we better understood them our fears would be lessened.  I remember when I received my diagnosis, I was scared; a flood of questions came to my mind: What is an Epidermoid Tumor?  How is it treated?  Does it require surgery?  How long have I had it?  I could list the countless number of questions that came to mind, but the point is not the number of questions, the point is that I was asking myself these questions, a sign of my lack of understanding, which led to my fear.

Thus, in the future, when you find yourself anxiety-ridden over an upcoming (or past) event or happening, try to turn this fear into inquisition, to broaden your understanding.  Hopefully, this will help to quell your angst.

[1] https://www.merriam-webster.com/dictionary/fear

[2] https://www.dickfosbury.com/

At this time of the year, with January 1st here, I feel it is both an appropriate and vital time to think about what it means to reflect. If you were to ask a 10 year old what reflection is, they might say it is the image produced when you look into a mirror (or glass or still water). The truth is that (besides that being one of the definitions of the word) they would not be too far from what I discuss here; when I think about reflection, I do not think about a physical image that is produced when looking on a certain material, but a less tangible ideal where our past actions and occurrences are pondered. The thought of a physical image that details how we look upon an object (whether it be a mirror or a window) does not stray too far from this existential meaning; in both one sees oneself in their true form.

When I think back to this year, I recall the countless interactions I had; from the cashier at a local grocery store to ones with my close friends. I know what I meant by my actions and words, but were they received differently, I ponder. How has my diagnosis of an Epidermoid Brain Tumor affect my life? Even though the diagnosis and subsequent surgery was back in 2013, I still often wonder questions about it. While I am also thankful that I am able to write for you through the EBTS, I often ask myself if the topics of my pieces are appropriate ones: would different topics be a better read for you? You’ll find that this process of reflection often generates more questions. Don’t let this discourage you, this process should create questions. The art of reflection is a process, not a magic trick, where you instantaneously emerge an improved human being; asking questions is not only an initial step, but also one that happens in the middle of it.

Reflection is how we grow. If Steve Jobs did not reflect on his past successes and failures, would the Apple technology be where it is today? If Albert Einstein simply accepted a half-hearted Theory of Relativity, this concept would likely be a lost one today. The point is not that reflection will always produce an iPhone, or time-space continuum theories, but that reflection is crucial for our progression, as both a human race and individually as people.

So during this time of year, take some time to pause and reflect on your past; whether it be a new brain tumor diagnosis, or perhaps a short interaction with an acquaintance, take time to ask yourself, ‘how did this affect me? Could I have handled it differently? Have I or the people around me changed because of it?’

The art of reflection is an important one that is vital to both us as individuals and the human race as a whole. Use this time of year to reflect. Most importantly, have a safe and Happy New Year!

I recently saw a great movie (titled ‘Race”) and one scene from it really struck me and persisted in my mind. Let me describe the scene to you: it is a movie about the track and field athlete Jesse Owens. Near the beginning of the movie Jesse is in college in the middle of a training session with the football team watching. One of these players makes a racist comment towards Jesse, clearly flustering him. The track coach notices this and in the next scene confronts Jesse about this. However, while confronting Jesse about this he deliberately riles up the football team and coach, in an effort to teach Jesse a lesson on the importance of focus; there is a poignant moment where all the football players are yelling, while the coach implores Jesse to focus on him, that “All of this is just noise. You are going to hear a lot of this in the years to come, you need to learn to block it out and focus!” The scene ends with Jesse focusing on his coach while successfully blocking out the other ‘distractions’. To make this point clear, the football players and coach can be seen yelling while no sound comes from their mouths.

This made me think of the concept of noise. This is not a new concept as many writers have referred to the idea of noise and the importance of shutting out noise in an effort to focus on the task at hand. Since my surgery the importance of being able to focus on the task at hand while blocking out all other ‘noise’ has become even more relevant. I find that the more I try to multitask the more mistakes that occur. I have learned that instead of trying to accomplish too much at once, it is better to get one task done well rather than two or three done shoddily. In sport this is easier, as the ‘noise’ is usually more tangible: whether it be crowd ‘input’, or your opponent is attempting to throw you off your game by ‘talking trash’. Don’t get me wrong, blocking out this noise can be difficult. I am simply saying that in sport, identifying this ‘noise’ is easier. But this isn’t only relevant to sports, it is applicable to life in general. Many of us have been diagnosed with a brain tumor showing us the fragile nature of our minds. I implore you to put your efforts into one goal, instead of being distracted by “noise.” Forget about that noise, it can only serve to distract you and delay you from your goals.

Because today is a day we honor our mothers, I have done much thinking about the importance of loved ones like our mothers and the importance of having a day like this; yes, the cynical side of me thought this is an artificial holiday created by card and flower companies in a ruse to make money. Then I realized so what if it’s a contrived holiday? Does my mind’s perceived origins of it mean that its aim is disingenuous? The answer is no; the holiday may fall on the second Sunday for arbitrary and questionable reasons, but we embrace it because mothers truly do deserve a holiday to recognize all they do for us.

In my life, I am lucky enough to have 2 mother figures. The first is my actual mother (a true red if you read my last piece), and I also have my wife, the mother of our 2 sons. (I failed to include my older sister in to this group as she is a mother of three). Each of these figures brighten my life, albeit in different ways. My mom only wants what is best for me, and will stop at nothing to make sure I receive the best of everything. I hate to use the term ‘Tiger mom’, but this is a woman who practiced as an Emergency Department physician and put her children through Yale, Harvard, and Tufts. Not only that, but she encouraged and supported my sister and me in our paths to medicine, with my older sister being an Emergency Department physician and me being a Family Practice doctor. She also wholeheartedly supported my younger sister’s less “conventional” choice of working in the financial sector. As hard as I may try not to call her a ‘Tiger mom”, this perfectly describes her.

My wife is different; she is more passive than my mother; but don’t be mistaken, this passiveness does not mean she has accomplished any less in her life. She graduated with a degree in Psychology from Harvard, and now practices as a Family Physician in Michigan and somehow manages to be an amazing mother while working on a full-time basis. Their mothering styles are different; the best example I can give is that if something were standing in the way of what either I or my sons needed, my mom would have no problem stepping on some toes to get what was needed. My wife, on the other hand, would make sure not to step on anyone’s toes but would still succeed at obtaining what was needed. Neither way is better, actually in both cases they get what they desire. I realized in thinking of the importance of them in my life that a day devoted to their appreciation is not enough. If I could I’d treat every day as if it were Mother’s Day to thank them for everything they do.

But this is only the brief description of my story and the importance these mother figures play in my life. There are almost 7.5 billion people on this planet; and every one of them has or had a mother. So my story, and the importance of the mother figures in my life is one of 7.5 billion. So call your mother today and tell her 2 things:
1. How much you love her
2. How lucky you are to have her in your life

Hi everyone! I wanted to thank you all for being patient with me during my hiatus. It has been many months since I last wrote an article for you.

One of the reasons I have not produced anything for you is that for the past several months I have been back in the clinic seeing patients, completing a portion of my family medicine residency training. As part of this training, once a month we have a 2½ hour seminar as part of our behavioral medicine curriculum. During this time we discuss a wide array of topics ranging from bipolar disorder to child abuse, all with the aim of improving our communication skills, and hopefully help us become more empathic physicians. One of the past sessions we were treated to a fascinating lecture on a less well known personality classification scheme. Most of us have heard of the Myers – Briggs test, where after an extensive set of questions, spanning many hours, you are given a set of 4 letters denoting your personality type. For example, you might be told that you are an ‘ESTJ’ meaning you are an Extrovert, Sensing, Thinking, and Judgment type. While I think this can be a helpful schema, my issue with it is the time required to take the test. During our session, rather than the Myers-Briggs test, we were given a different and much shorter personality test (it literally took me 7 minutes to complete) and based on the results were given a color that matched your personality type. I have included a copy of this questionnaire below, I encourage you to try it:

Personal Style Inventory
Robert W. Russell, Portland, Oregon
Used by permission

Each line below lists two contrasting traits. Your task is to divide seven points between the two statements on each line to reflect the balance of how each best describes you. Points may be divided in any way you wish, but both sides together must add up to seven. Give high points to the description that describes you well, while giving the other side low points. Do the same on each line for Part 1 and Part 2.  For example, people who see themselves as quick in the way they handle things might fill out the first line like this:

************************************************************************ 

 5  Likes a fast pace.                    or                2  Likes a slower, more deliberate pace


Scoring Instructions

Add up the total number of points for each column (A, B, 1, 2). the columns (A/B and 1/2) with the highest points determine your color.  For example:

A ‘red’ is a very assertive person, a type A personality.
A ‘green’ is very task oriented, they are the thinkers.
A ‘blue’ is very compassionate and detail oriented.
A ‘yellow’ is more of an introvert, and always follows the rules.

I have also included a copy of the interpretation sheet and what the various colors mean:

The Four Basic Styles

A-1 RED

TASK ORIENTED. FOCUSED ON RESULTS. EXERTS STRONG INFLUENCE IN GETTING THINGS DONE. ASSERTIVE IN EXPRESSION OF IDEAS. PREFERS BEING IN CHARGE. HAS STRONG OPINIONS.

COMMON STRENGTHS: Determined, decision maker, efficient, gets results, direct, takes charge, responsible, leadership qualities, risk taker, alert to opportunities, challenging limitations.

POTENTIAL WEAKNESSES: Dominating, unsympathetic, demanding, critical, superior, harsh, impatient, dictatorial.

A-2 BLUE

PEOPLE ORIENTED, EXPRESSES OPINIONS AND EMOTIONS EASILY. IS VERY ACTIVE AND MOVES AT A LIVELY PACE. PREFERS STRONG INTERACTION WITH PEIOPLE. USUALLY HAS MANY INTERESTS. TENDS TO BE IMAGE CONSCIOUS.

COMMON STRENGTHS: Personable, stimulating, enthusiastic, dramatic, inspiring, innovative, articulate, concern for the welfare of others. Looks for ways to be helpful, friendly, tries to avoid being a burden to others, warmhearted.

POTENTIAL WEAKNESSES: Opinionated, excitable, phony, flighty, reactionary, exaggerates, showoff, pushover, bleeding hearts, doormats, too social.

B-1 GREEN

DATA ORIENTED, LIKES THINGS TO BE WELL ORGANIZED AND THOUGHT OUT. PREFERS SPECIFIC PROJECTS AND ACTIVITIES THAT CAN BE SYSTEMATICALLY WORKED ON. ENJOYS PUTTING STRUCTURE TO IDEAS. THOROUGH AND CAREFUL ABOUT DETAILS.

COMMON STRENGTHS: Industrious, persistent, serious, vigilant, orderly, rational, methodical, factual, thorough, planners, thinkers, analyzers.

POTENTIAL WEAKNESSES: Indecisive, picky, withdrawn, data-bound, uncommunicative, critical, unsympathetic, analysis-paralysis.

B-2 YELLOW

SUPPORT ORIENTED. STAYS OUT OF THE LIMELIGHT. LIKES BEING PART OF CORDIAL AND FRIENDLY GROUPS. HIGH CONCERN FOR GOOD RELATIONSHIPS. SEEKS STABILITY AND PREDICTABILITY.

COMMON STRENGTHS: Flexible, cooperative, supportive, friendly, willing, dependable, personable, sincere, helpful, team player.

POTENTIAL WEAKNESSES: Conforming, retiring, overly sensitive, dependent, unpredictable, wishy-washy, hides true feelings, sarcastic, chameleon, the “company man/woman”. 

Personally, before this lecture I despised personality tests; I hated the idea of being labeled and I also frequently find flaws in their findings. Yes, that’s true about me I will think, but this is definitely not like me. This test was different though, while yes it did label me as a certain personality, it was also incredibly accurate. Every bullet point that described my personality, my ‘color’ was true.

But what was the purpose of this test? For us, it helped us better understand ourselves and others, and hopefully will aid us in our interactions with colleagues and patients. But why should that exclusively help physicians? All of us have our color, knowing it will not only help us become more self-aware people, but it will also help us better understand others and where they are coming from. For us, even though we share the commonality of either suffering from Epidermoid Tumors or having a loved one afflicted with the condition, we are all individuals, different people with different personalities. It is impossible for any personality test to be 100% accurate, they are simply aimed at classifying your personality with few errors. For me the accuracy of this test was striking, with such little preparation time. More importantly, it highlighted to me the importance of self-awareness and how all of our interactions with others can be made better with this understanding. Take the test, find out what color you are. What color would you label your loved ones? Are there certain colors you are drawn to? For me, I turned out to be a ‘yellow’ with my wife being ‘green’. But I realized that a team filled with either yellows or reds would not make an effective team – you need diversity in colors to make a good team. Tell me what color you are, and what color your loved ones are.

In reflecting on my experience with this tumor, I kept coming back to the idea that love played an integral role both in my diagnosis and recovery.  I realize I am not alone in knowing the importance of love.  Perhaps, it was a loved one who implored you to see a physician to obtain a diagnosis; maybe your loved one makes sure to attend all of your appointments; love and support can be as simple as holding your hand during difficult times.

For me, I remember first trying to leave my wife out of the situation, believing being tough meant being a lone ranger; in reality, there really is no such thing as a ‘lone ranger’, even the Lone Ranger needed help (from Tonto).  When I realized that the diagnosis was a grim one, I had to telephone my wife to have her by my side when I received the diagnosis.  When I was waking up from my anesthesia after my 16-hour surgery, the first person I apparently called for was my older sister.  When I was transferred to the ICU I remember holding my younger sister’s hand.  My mother spent every night with me in my month and a half long stay in the hospital.

Why do I tell you this?  Why is this relevant?  I am like anyone else, and when the chips were down and I was shoved into a corner, I instinctively called for loved ones.  Like I said, I am like everyone else; my nature to want loved ones by as I faced difficult situations is an instinct that we all share.  I then thought of the idea of love, and its role in my ordeal: I realized that love not only got me a diagnosis, but it has also helped me through my recovery.  The neurologist who diagnosed me reached his conclusion out of love; love for the art and skill of his profession.  I was promptly seen at the University of Michigan because those who loved me quickly called and found the top neurosurgeon in the area. Every card, every visit, which brightened my day was done out of love.

With health issues like epidermoid brain tumors, we all need loved ones to help us traverse this terrain.  Whether you are a ‘wait and watch’ patient or have upcoming surgery scheduled, the idea of love is how we get through this.  Even though the thought of love may immediately place your mind in the realm of the traditional sense of the word, love can come in many forms; yes love of a fellow human is the more ‘traditional’ thinking behind the emotion, but we can (and do) love more than just people—we love places, arts, and professions too.

I do not tell you this to tell you how lucky I am to have those around me who love me, but to remind you that every relationship you forge, every loved one is a person you should cherish.  It’s easy to be with a loved one during times of joy, but remember it is those same people that will also be there when you are down.

Today I had the pleasure of reading a post by a fellow EBTS member. The post discussed frustrations she had with her Neurosurgeon. This post generated much response, and garnered many replies. I must admit that my initial emotion was frustration…frustration with the minimization by this Neurosurgeon, frustration with the lack of the ability of this clinician to portray his thoughts, and empathy for her frustration in dealing with this condition. I will share her post with you below:

Errrrgh. . .another visit to my (neuro) Ophthalmologist yesterday. Third one in the last 6 months. Lovely man except for one thing. His need to assure me that I am very fortunate that I do not have a malignant tumor, that I shouldn’t really use the term tumor because that sounds more frightening than what it actually is, and that really all “it” is, is a growth and you can get growths anywhere! Then he says we are just keeping an eye on this because of the proximity of it to the brainstem. . .I am a watch and wait. My Epidermoid is around my brain stem causing many symptoms which I am treated for. Three surgeons have said they do not want to operate because the risks of permanent damage currently outweigh the symptoms I live with at this time. I am fine with that! But what I don’t get is why so many medical professionals downplay the Epidermoid like its nothing to fuss about and don’t call it a tumor. . .sorry just feeling frustrated.

My frustration turned to anger with subsequent reads; anger that this brain tumor is being treated this way. Now that I have had time to reflect with a cooler head about my reaction, I’ve come to realize that the emotion, frustration, plays a major role in dealings with this condition.

To truly understand the topic of frustration, it’s necessary first to give you my definition of it. In my eyes frustration is a deep seeded emotion; this is in contrast to an annoyance. These terms are sometimes mistakenly used interchangeably.
While someone taking the last parking space in front of you may be a frustrating experience, I think of it more of an annoyance than a frustration. To me, living with a brain tumor inside your head and having your trusted physician trivialize the condition is frustrating.

I would be remiss if I mentioned frustration and did not interject my experience with the emotion: having been on the path to becoming an Attending physician (in medicine, there is a hierarchy to becoming a physician: this hierarchy is ordered medical student, resident physician, and attending physician. I was diagnosed with this brain tumor near the end of my residency). Then having this ‘path’ interrupted by the diagnosis of an Epidermoid Brain Tumor, becoming physically disabled overnight (as I once explained to my friend) has put me through many frustrations. These frustrations varied from fumbling with paper straw covers, to being viewed as incompetent by patients due to my poor physical and verbal ability.

The key to dealing with these frustrations is to focus instead on the positive and not to dwell on the negative. In my case, if I were to contemplate all of the frustrating factors that accompany my condition, I would no doubt spiral into a crippling depression. In fact, many around me have said, “Chris, if I were in your shoes I would become depressed.”  A number of psychological and psychiatric professionals routinely screen me for depression, asking about my sleep and appetite and general mood. My wife, worried about my mental state, once told me, “If you keep bottling up your frustrations, there will come a time when it all boils over and spills out.”  My response was that I was not ‘bottling up’ or ‘ignoring’ these frustrations; I instead chose to focus on aspects of my condition that did not frustrate me, and actually brought me hope.

I am not a daily meditator, but you are taught to try and ‘clear your mind’ when you meditate. “What are you seeing when you close your eyes [to meditate]?” my father, an avid and expert meditator once asked me (at the time I was trying to leech off his knowledge with meditation). At first, my response was that I would try and picture a tranquil mountaintop. (I was impressed with my answer and thought it was a clever way to clear my mind). My father’s response surprised me, “Mountaintops are something, remember you’re trying to clear you mind. Try instead to imagine a clear blue sky.”  Furthermore, he taught me that thoughts may manifest as clouds coming through this sky. “Do not ignore these clouds,” he told me, “instead it’s important that you acknowledge them, but then let them pass.”  He went on, “as you become more adept at meditation, these clouds will appear less and less.”  What does this have to do with frustration? If you think of these frustrations as clouds that can only hurt you, then it’s important to acknowledge them but then to let them pass. In this case, yes there are people who minimize what you are going through, but remember that only you truly know what you are going through and that in the end, it does not matter what others say about your condition, what matters is how you let it affect you.

In applying for medical school one of the most frequently asked questions on the interview trails is, “What do you want to do in medicine?” While the interviewers know that there are countless responses to this question including answers like: “I hope to become a surgeon,” or “I would like to work in an under-served community” the answer that is often sought by these interviewers is “I would like to be heavily involved in research.” These interviewers realize the importance of research. he interviewees have come to realize this and make it part of their standard response, even though in reality only a small percentage of physicians are actively involved in research.

I must admit that when I was asked this, I ‘towed the party line’ and would make sure to include ‘research’ in my response. I was not being completely dishonest with this answer, as the idea of taking part in research studies intrigued me and I did hope it to be part of my career in medicine. Where I may have been misleading though is the amount I wished to delve into research; if one’s career in medicine could be broken down into percentages, many of these interviewers would like research to be 30- 40% of one’s medical career where in reality for many, besides the required residency research project, research only encompasses 5- 10% of their career. This is only a generalization; thankfully, there are many physicians that devote most of their time to research.

But now that I’ve become older (and hopefully wiser) I have come to realize why the response of ‘research’ is so sought after; in medicine, research is what drives innovation and change. Without research we wouldn’t be nearly as knowledgeable as we are in topics like Heart Disease and Cancer. In fact, without research driving the progress of medicine, we would likely still be in the Dark Ages of medicine, with life expectancies in the 30s and preventable diseases like polio ravaging the population. Much of medicine is reactionary: if someone presents with a heart attack, steps are taken to identify the blockage and to relieve it; if a person were found to have cancer, medications (and sometimes radiotherapy) is given in hopes of hitting the cancerous cells. While both of these actions are vital to the care of these patients, they are both reactions.

Research takes a proactive approach – instead of fighting these diseases and conditions, isn’t it more rational to prevent them from occurring?  Perhaps my training in Family Medicine biases my opinion, but I’d like to believe that the thought that ‘an ounce of prevention is worth a pound of cure’ is a widely accepted axiom. In my eyes, research follows this approach, leading the cutting edge of medicine, preaching a proactive approach rather than reaction.

When I was asked to write for the Epidermoid Brain Tumor Society (EBTS) I immediately jumped at the idea. Even though I was not a member, I had followed the group ever since my diagnosis and surgery. Their leadership especially impressed me: both Linda Frevert and Fay Powell, besides being incredibly kind, were instrumental in my decision to write for them. They have been so supportive and positive from the beginning.

As I have become more involved with the EBTS, I have been able to witness EBTS’s involvement in research. Early research surveys involved members at the beginning of organization and more recently an international member conducted a study with voluntary EBTS member participants which will further the knowledge and awareness of epidermoid brain tumors and our struggles with them.The study will be public this fall 2015.

Perhaps writing for the EBTS is my own way of contributing to medical progress.

*** Although there are no current research studies for epidermoid brain tumors, EBTS strongly urges members to voluntarily have tissue saved from surgery for future research.