May the 4th Be With Me!

Happy 6th Month Brainniversary to Me!

Every day without a brain tumor is a celebration, but today I mark my 6th month brainniversary! And to think that one year ago I was very ill and suffering horribly. I knew I had a pineal brain tumor, but was being told repeatedly that it was not causing my symptoms despite no other medical issues. Then I saw Dr. Dong Kim in Houston and he believed the pineal tumor was indeed causing my symptoms and he removed it in November! Dr. Kim is a brilliant surgeon, a most compassionate doctor, and will always be my hero! If it wasn’t for him I cannot imagine what my life would be like right now. I don’t want to imagine. I have come so far in a year and I’m truly grateful that I no longer have constant pressure headaches or nausea and vomiting. Those things can decrease quality of life like nothing else.

So that’s it, right? That, as they say, is all she wrote! I mean, everything is perfect now, right? I’m all “back to normal?” All my symptoms are gone? I can just get back to my life as it was before the brain tumor, right? Wrong.

I’m not ashamed to be transparent about my health. I have no reason to hide and I can’t help anyone else if I do not share the whole truth of my reality. You see, a brain tumor can cause an acquired brain injury (ABI). Surgery to remove a brain tumor can also cause an ABI. An ABI is a form of traumatic brain injury (TBI). The difference just means that the brain injury was not caused by direct blunt force trauma, like hitting your head on the windshield of a car in an accident, or like when a boxer gets punched in the head repeatedly during his/her career. “Acquired” means damage to the brain tissue caused by a tumor, or brain surgery, or lack of oxygen to the brain, or a stroke. All of those things can result in ABI.

I have an ABI. And like the pineal tumor, I’ve had to do the research on my own to determine what is going on with my brain. Not one single medical professional has explained ABI to me. Not one. Not the possibility that I could be left with it and not the actuality that my continued complaints are a result of it. Not even Dr. Kim, my neurosurgeon hero. No one told me about ABI. But I’m not surprised. Everything along this journey has been fraught with lack of forthcoming information from medical professionals and lack of knowledge, awareness, or truth. So trying to get help for what is going on with my brain continues to be my priority. I continue to be my own best advocate!

I sought assistance from the Brain Injury Alliance of Colorado. They only work with "traumatic" brain injury clients due to lack of funding (as an aside, there are no designated resources for ABI in Denver except for those with a stroke ABI). When I shared my story of how I got to this place in my life, the caseworker at BIA Colorado was so compassionate and offered to help me. I’m grateful. She validated my experience, confirmed that my symptoms are related to a brain injury, and she put me in touch with resources I might not otherwise have found.

So what is life like for me at my 6 month brainniversary? Pretty similar to what it was at 3 months! I hit a plateau on improvement at about that time and things remain much the same.

My vision has yet to improve or return to the way it was before. This month I will see my neuro eye doctor for an evaluation. I haven’t seen him in a year so it will be interesting to see what my exam shows.

I still have debilitating fatigue. I know brain healing is slow and can cause fatigue, but it's also possible that going through a brain tumor and brain surgery could have thrown me into another health crisis that better explains the chronic fatigue. I’ve had some blood work done, but I need to look a little deeper to see if I’m missing something. Yes, I said “I” because none of my doctors take any initiative to investigate the cause of the fatigue. Once again, I’m on my own to figure it out. But it takes energy and clarity and I have neither.

The cognitive deficits and memory issues continue. I'm aware that I look fine and I talk fine. I can write this blog post fine (although it takes me a very long time to put thoughts in order and get them concisely on paper). But I know my brain and my brain is not fine. And no, it is not normal aging. There is nothing normal about my cognitive deficits. It's as if someone took an eraser to my brain. I have to write everything down, put everything into my calendar, and set reminders and timers for everything. I was not like that before. I can take a pill and in two seconds cannot remember if I took the pill. So I am learning to use cues to remind me of every little thing. I can't remember numbers at all and can't do simple math in my head. Short term memory is terrible. I have no reading retention beyond a couple of sentences. I’m in a daze…like a brain fog…all of the time. I don’t have clarity of thought and often cannot finish a thought process. I cannot follow conversation if I am speaking to more than one person, and sometimes not even with one person. I zone out. A room full of people talking puts me into a state of anxiety…it feels like chaos and confusion.  The more I try and manage it so others don't notice, the more chaotic it feels. I’m hypersensitive to light and noise. I was not at all like this before. I was sharp. I’m not sharp now. I was easy-going and flexible in most any situation. Now, out of necessity to keep stress down, I'm more rigid about my environment and what I can tolerate, and what I cannot.

I’m very aware of the deficits and how different my brain is now compared to two years ago. I’m very aware that parts of my brain are not working, that connections are not getting made. Because I’m 54 years old most people believe this must just be normal aging. Again, it is not normal aging. It has been a dramatic change for me over the past two years that coincides with the growth of the pineal tumor and resultant surgery. And it is really similar to TBI symptoms. Brain injury is brain injury.

I’ve begun working with a therapist who is a brain injury specialist and she assures me it is not normal aging. Her assessment is that I have an ABI. I'm also supposed to schedule cognitive testing with a neuropsychologist this summer. Once I have these results, hopefully I can find cognitive and visual therapies that can help me continue to heal and improve. I haven’t given up and I’m still trying to adjust to a new “normal!”

This is my experience. I don’t speak for anyone else or try to normalize what anyone else will experience given a similar situation. But I believe it helps to know what may lie ahead if someone is facing a similar experience. And because no one told me any of this, I feel it is my duty to share what I’ve learned.

Life goes on and I need to feel purposeful in my life despite my limitations. I'm trying to figure out how and what is a good fit for me. To quote one of my favorite characters from one of my favorite films, “I guess it comes down to a simple choice, really. Get busy living or get busy dying!” (~Andy Dufresne, “The Shawshank Redemption”)

I'm getting busy living! On June 4 I will be volunteering with the National Brain Tumor Society at the Denver Brain Tumor Walk. I am also scheduled for a volunteer orientation later this month with Freedom Service Dogs. They rescue shelter dogs and then train them as service dogs for people with a variety of disabilities, including TBI! I can’t think of a better place to busy myself while also helping others! 

Finding my new "normal."

It was almost one year ago (2/20/15) when I experienced the explosive pressure headache that never fully went away and resulted in me seeking answers, answers that would prove to be extremely difficult to find. Today I celebrate my 3 month brainniversary! Three months ago today I had the pineal cyst removed. The pressure in my head and the explosive headaches are gone. The frequent nausea and vomiting are gone. The fatigue, cognitive/memory deficits, and the visual problems are still with me. I have no regrets that surgery was the right thing to do for me, but now I am also fully aware that I have forever been changed.

Healing from brain surgery requires patience like I’ve never known before. Brain surgery is an acquired brain injury, for those who didn’t realize this. I know I didn’t. I’m learning a lot about this now. Having someone’s hands in your brain with tools and instruments creates a brain injury. Having them drain all of your cerebral spinal fluid from your brain and drying it out with chemicals so they can open it up and operate on it is a brain injury. I had no idea. Honestly, I didn’t. I just focused on getting the brain tumor removed so all the symptoms would go away. I didn’t think about any lasting damage caused by the tumor. I honestly thought if the tumor was removed then I would get back to my old self. Nothing could be farther from the truth!

Brain under reconstruction!

Oh, they warn you about the risks of surgery, you know like you could die, be paralyzed, have a stroke, etc. But they don’t really explain what you will be left with if the surgery goes “well.” Why? Because they don’t know. In one of my previous posts I talked about how brain surgery is still in its infancy. Honestly, everyone who has brain surgery is a guinea pig because no two people come out the same. There are too many variables. The reason they can’t warn you about what you will be left with is because they don’t know.

I’m learning what I’m left with by trial and error and everyday it becomes more clear to me. I have deficits that affect the way I interact with the world and relate to others. If something is too hard for me, or too exhausting for me, I must choose not to make the effort. I can’t afford to become any more fatigued than I am. So I must conserve my energy and in doing so, I isolate myself and I say no to a lot of things. I make myself a priority. I have to. I get one chance…one…to heal my brain and I’m going to make this a priority in my life. Understandably so.

Yes, the surgery is done and the tumor is gone! I know, I know. I should instantly be back to normal! One would think that’s true. I thought that would be true. I wanted that to be true. But I somehow overlooked the reality that I would be different after the surgery. I assumed that once the incision was healed, so was my brain and that I would be exactly like I was before. I would be “normal” again, feel “normal” again,” act “normal” again.  I had no idea that none of this would be true. 

The reason I write this blog is to help other people understand. Not just people with pineal cysts, but also people who know people with pineal cysts and those who've had surgery to remove them. Some "friends" have gone by the wayside because they expected things from me that I wouldn't deliver. That's sad but I can't make choices that are wrong for me just to appease other people. Also, many people have said to me "I have those same memory and cognitive problems...its a normal part of aging." No, you don't and no, it isn't. What I am experiencing is not normal aging.

In the spirit of helping educate others about pineal cysts and the surgery to remove them, I would like to share as specifically as I can what this experience is like for me personally (I don't speak for everyone; I speak for me): 

1) Fatigue. I still have no energy at all and will make choices based on whether or not I can recover from them if I choose to spend my energy on them.

2) Memory and Brain Fog. Please don’t take it personally if you’ve told me something and I forgot. It happens. I was having problems with my memory before surgery and it is no better now. I try and set reminders of things and write lots of things down so I won't forget. But I may not remember all the details of a conversation we had. For that I am sorry, but I do ask for your understanding. I’ve had a consultation with a neuropsychologist who has asked me to wait six months after surgery before I get tested for cognitive functioning. Again, the brain takes a long time to heal and I’m told to be patient.

3) Sensory Overload. Noise, chaos, confusion, crowds, following instructions, and new situations all cause me to have sensory overload. I get extremely uncomfortable and I can’t cognitively handle situations that cause sensory overload. I can’t follow a conversation when several people are talking, such as in a social setting. I just zone out and look disinterested. I’m not disinterested, I’m lost. I get lost because I can’t stay focused. Please understand why I avoid these situations.

4) Sensitivity. I’ve become extremely sensitive to pain, physical and emotional. I’ve always been one who picks up the emotions of those around me and now it is even more pronounced. I cry easily and sometimes it has nothing to do with me but that which I am sensing in my environment.

5) Isolation. It is a protective mechanism to isolate myself. It helps me avoid everything I’ve just listed above. It’s not you, it’s me! Please, come visit me or invite me over! Please, ask me to meet you for coffee or lunch or a short walk. It helps to have someone reach out to me even if I’m not reaching out to you. My default is isolation. And if I say no please reach out to me again at another time. Don't take it personally. I may be having a difficult week.

6) Vision. My vision has still not improved. My surgeon said to be patient and allow six months for healing (again, the brain takes a long time to heal). Driving at night is out of the question. The lights blind me and I can’t read street signs. I also can’t read most print material. Trying to read a book causes such significant eye strain, not to mention that I can’t remember what I just read!

7) Future. I have no idea what my future will hold as far as job, career, etc. I know I won’t be returning to nutrition school, but I don’t know what I will be doing. This is very frustrating for me because I have always worked or pursued education or both. It is very disheartening for me to not have something I am pursuing, but I’m trying to be patient with my healing process.

Meanwhile, I would like to find a volunteer position that will help get me out of the house for a few hours a week doing something to help someone else, but it can’t be chaotic or stressful or require me to learn new skills (per doctors orders). I don’t have the capacity to do much but I want to do something. For instance, I would love to rock babies, or greet people, or sit and talk with one individual. Something simple and calm. I find that many volunteer jobs require training and expertise just like a full time job. That’s not for me right now. So I will keep looking.

I have also reached out to the Brain Injury Alliance of Colorado and although they work primarily with people who have a traumatic brain injury (as opposed to an acquired brain injury, which is more in alignment with what I have), they want to meet with me next week to see how they can help me. I’m grateful for the kindness of others!

As for today, I celebrate life and my three month brainniversary!

Hello from the other side!

No, this post has nothing to do with Adele’s new song. This post is about the fact that I’ve made it to the other side! Yay! Saying “welcome to the other side” is how our pineal Cysters greet one another when one of us gets the pineal cyst removed. The other side means you’ve gone from cyst to no cyst, bad to better, hell to out of hell, ill to well, and hopeless to hopeful! I am beyond thrilled to be on the other side!

So to back track, on October 31 my husband and I began the two-day drive from Colorado to Houston where I would have my surgery to remove the pineal gland cyst. After getting settled into our short-term apartment and going through the anesthesia and pre-op appointments that would clear me for surgery, the day finally arrived! On November 4, Dr. Dong Kim, Director of the Mischer Neuroscience Institute, and Chief of Neurosurgery at Memorial Hermann, University of Texas Health Science Center, removed the pineal cystic mass, or “my brain invader” as I referred to it. 

My hero, Dr. Dong Kim (one week after surgery)

 Dr. Kim described the cyst as very large and somewhat irregular based on what it looked like and how tough, or fibrous, the outer shell was compared to what he is used to seeing. But, he managed to remove the entire cyst and the pathology report confirmed it was a benign cyst. The first 24 hours after surgery were spent in the ICU. The second day was spent in a regular room and on day three I was discharged from the hospital. The first three days were pretty awful but no more than I had anticipated. I expected awful!

In ICU with a smile and a "thumbs up!"

 I spent the next two weeks recuperating in an apartment in Houston with exceptional nursing care provided by my husband and my two daughters (Lindsey got to be with me the first week and Stacey got to be with me the second week). I could not have gotten through it without them! It was not pretty and it was not fun, but I was in very good hands and very grateful for their love and assistance! I also felt very supported by the love of my family, friends, and all of my cysters cheering me on!

A few days after surgery

At the end of the second week, with sutures removed and clearance from the surgeon to travel home, my husband and I made the two-day drive back to Colorado where I began the long, slow process of healing. The brain heals slowly and patience is a virtue!

Each day got a little better, except for the days when I felt it was one step forward and two steps back. Healing is not linear, especially not from something so major as a craniotomy and brain tumor removal. The pineal cyst had done its damage from all the pressure it created while sitting in my brain, but the brain surgery itself caused a whole new brain injury. It’s a fine line between doing and overdoing it after surgery and I didn’t always know the difference. However, I've learned to pay attention to my body! It always reprimands me if I overdo anything and punishes me by setting me back an appropriate amount of time. Do-over!

Fortunately, I’ve had nothing on my agenda the past couple of months except for getting well. Even the holidays went by without much of my attention this year, except that I cared that I was still here for them! You see, approaching a surgery like this makes one pause and face mortality as never before. The risks were great. In fact, I took it seriously enough that before I left Colorado to go to Texas I took the time to write “If you are reading this then…” letters to my husband and my daughters and I got all my legal documents in order, just in case I didn’t come back. That was my reality. I couldn’t possibly know the outcome and I wanted to be sure I had said everything I wanted to say just in case it didn’t go well. Always the realist and always prepared, I am! Fortunately none of that was needed!

Now I am more than two months from surgery and I have made a lot of improvement in that time. The pressure headaches and explosive headaches I had before surgery are gone. The nausea and vomiting I had before surgery are gone. Fatigue and lethargy is still slowly improving. I’m still struggling with vision issues and cognitive/memory issues. My surgeon said to give the vision issues at least six months for improvement. I had a phone consult with a neuropsychologist last week about getting a cognitive function assessment and he also told me to give it at least six months for improvement. Patience, my dear, patience!

Surgical scar one month after surgery.

Meanwhile, I’ve had a lot of time to think about everything I’ve been through. I have gained some hindsight looking back on the past year, from getting sick, getting diagnosed with the cyst, the struggle to research and understand how mysterious an illness this is, how few surgeons understand it or will treat it, finding my support group of cysters, finding surgeons who would help me, facing the brain surgery to remove it and then the recovery from it. I feel like I lost almost an entire year to my brain invader, but given the choice of trying to live with the symptoms and illness or taking the risk of having surgery, quality of life won out for me as it always does.

I feel as though not having the cyst isn’t the only thing that has changed for me. The whole experience of this past year has made me tougher, yet softer. Paradoxical! I feel capable of successfully handling very hard things, but I also feel more sensitive than ever. I’ve gained more compassion and find I am more tuned in to the suffering of others. At the same time I have a lot less tolerance for dealing with, well to put it frankly in terms everyone can understand, bullshit! Maybe that’s the result of facing my own mortality and realizing that life truly is precious and that we waste so much of it on BS that doesn’t matter while overlooking those things that do. I'm grateful for this and I'm perfectly fine walking away from that which does not improve or serve my life.

For the next several months I will continue to heal. I don’t know what the future will bring but I’m tossing around some ideas of ways I can help others who are faced with symptomatic pineal gland cysts. There is a lot of misinformation in the medical community about these cysts, too many people who need help, and not enough help available. There’s work to be done, but first I have to give myself ample time to heal. I only get one chance to do it right and nothing is more important right now than healing my brain! The other side is really wonderful and I'm so fortunate to be here!

What is the big deal?

I have discovered that although brain surgery is one of the most ancient of medical practices (evidence has been found dating back to the Neolithic period around 10,000 BC), the understanding of the brain, especially as it relates to surgery, is truly still in its infancy. I had no idea. We've obviously made far advances in brain surgery, but there is still a long way to go. This might explain why more surgeons won't do the kind of surgery I need done. After all, what is the big deal?

I think I wrote in a previous post that this is the most difficult part of the brain to operate on given that the surgeon will be in direct contact with the most vital brain functions. There is a book called "Do No Harm - Stories of Life, Death, and Brain Surgery," written by neurosurgeon Henry Marsh from London, England, (May, 2015). He has a chapter devoted to pineocytomas (it is believed I have either a pineocytoma or pineal cyst - their symptoms are the same). Below I explain a little about my own upcoming brain surgery and then offer an excerpt from the book which explains about the vital functions the neurosurgeon will come in contact with during the surgery.

Warning...CREEPS ME OUT Alert: If you don't like details of surgery because they creep you out, stop reading here!

For my surgery, they will do a craniotomy on the back of my head (they will remove a portion of my skull and then put it back with a titanium plate after surgery). The surgeon will use a microscope to access the pineal region tumor through the craniotomy. 

For those of you who are curious, and if you are one of those who likes to know about surgery stuff, here is an excerpt from the chapter on pineocytomas (and thanks to my cyster Lynsie Payne for making this image from the book):

What's the big deal? Pretty big deal and really fascinating stuff! I'm totally in awe of surgeons who do this kind of work, especially since there are so few of them. I'm hoping that patients like myself...the pineal guinea pigs of brain surgery...the pineal pioneers of changing beliefs...will help change what is understood about the brain for future generations! Pineal tumor sufferers need more surgeons in the world!

Three weeks to my surgery date! 

Copy that, Houston!

Houston has confirmed my surgery date for:

Hmmm. November 4. Traditionally known as voting day in America. Well that's certainly appropriate because I vote YES to evict the unwelcome brain invader! Who's with me?

Between now and then I have lots to do because I'm going to be in Houston for a while and home recovering afterwards for however long it takes. Slow and steady, day by day.

I'm going to try very hard to focus only on a positive, successful outcome and not on having to go through the surgery itself or the what if's. Otherwise, I'm going to get really, really scared.

I'm also going to focus on gratitude for everyone who has reached out to me with offers of help, prayers and healing energy, and encouragement. From this I draw strength! I am surrounded by so many wonderful, loving people. Thank you for your kindness and concern. Thank you for being my cheerleaders!

And now, because humor makes everything less scary, here's a little humor...

"Brain surgery. Its not exactly rocket science!"
(click on the link below for a youtube video)
Brain Surgery - Mitchell and Webb

Houston, I have a problem!

When I began on this journey I decided to write a blog because it became evident very early on that there is a lot of confusion about pineal cysts and very little accurate information available. I wanted to document my journey because if I can help just one person not have to go through months or years of confusion and illness by getting faster access to knowledge than I had, it will be all worth it to me! I knew early on that I was going to have to do a lot of research on my own. Most doctors deny them. Most neurosurgeons deny them. The standard response is “the cyst is not causing your symptoms.” Most often patients are told they have migraine syndromes and the only treatment is pain management of the migraines. This is what I was told by the doctors and surgeons I have seen in the Denver area. I wonder now how many “migraine sufferers” actually have symptomatic pineal gland cysts and are not properly diagnosed?

I knew I didn’t have migraines. I knew there were a host of other symptoms I was having that were not explained by migraines. I also don’t like taking pharmaceutical drugs for symptom management when 1) they lead to lots of negative side effects leaving you worse off, and 2) they don’t treat the problem leaving you dependent on drugs. My approach from the beginning has been to find a cure for the problem, not a management of the symptoms. I was told over and over “the cyst is not causing your symptoms.” So, I kept searching and researching. 

By the Grace of God, my searching led me to a private support group on Facebook where I met wonderful people (Cysters, as we fondly refer to ourselves) who have already been down the long road I was embarking on, or like me were getting ready to go down it. This is where I learned that there are primarily only three surgeons in the U.S. (and maybe only 2 in other countries) who agree that pineal cysts can be symptomatic (can be, they aren’t always) and agree that the only way to treat them is to remove them. This is also where I learned that the most important thing to do is rule out everything else. And I have done this. There is nothing else going on with my health and nothing else exists that could explain my symptoms. I feel very certain I have done my due diligence.

I have now consulted with two of the three surgeons (the two who are in network with my insurance), one in Houston (Dr. Dong Kim) and one in Charleston (Dr. Sunil Patel). Both are highly experienced neurosurgeons, and more importantly, they are both experienced in operating in the part of the brain where the pineal gland resides. The pineal gland, from where the cyst develops, is located deep in the center of the brain. In brief, the pineal gland is part of the endocrine system and its main job is regulation of the sleep/wake cycle by releasing melatonin.

Not all neurosurgeons operate in this part of the brain. It takes great skill to get to the area due to the vital importance of structures around this area. It is the most risky of all brain surgeries. Both of the surgeons I have consulted with are specialists in this surgery and both agree the invader needs to come out if I want to get better. They also both agree that the pineal gland is long gone, becoming incorporated into the invader and not having worked effectively for a long time because of this. 

Although the two surgeons agree the invader is causing my symptoms, they don’t agree on exactly what they believe the invader to be. 

Dr. Kim in Houston believes I have a pineal cyst, essentially a benign fluid-filled sack that may have partially calcified depending on how long it has been in there. Dr. Kim believes the cyst causes symptoms because of its position in the brain, the displacement of fluid and compression of the surrounding structures.

Dr. Patel in Charleston believes I have a pineocytoma, essentially a rare benign brain tumor arising from the pineal gland that can be both solid and cystic. Dr. Patel believes that the pineocytoma contains protein that leaks from the tumor causing the brain to react to the excess protein. He believes this reaction is what creates the sensation of increased pressure in the brain.  

So you can see that even among surgeons who treat these invaders the information is still very confusing about what exactly I have going on. Either way, cyst or tumor (you say poTAYto, I say poTAHto), they both cause the same set of symptoms based on the structures they impact in that area of the brain; these being pressure in the brain with headaches, vision disturbances, nausea and vomiting, dizziness, memory and cognitive issues, and chronic fatigue. Those are my main symptoms.

Having met with both neurosurgeons and weighed all my options, I chose Dr. Kim in Houston to remove the pineal cyst/tumor.

First, it was not an easy decision to choose to have brain surgery and second, not easy to choose a surgeon when I believe both of them to be completely capable. I know some people won’t understand why I am choosing surgery at all. This is truly an invisible illness. For the most part, I look physically well. However, I haven’t felt physically well in seven months, and even longer since I knew something was going wrong with my eyes and my brain. I can’t accept living with it if there is something I can do to get better. I don’t want to be a sick person if I can be a well person. Trust me when I say I have fully researched what is known about these invaders and am completely at peace with the knowledge that nothing else is going to help me get well and I am a peace with my decision.

It is miserable having a pineal cyst/tumor. I feel awful most of the time. I can’t see very well. I’ve given up reading. It causes too much eyestrain. I can’t physically do the things I want or love to do. I have become mostly homebound. When I do get out and do things I easily become exhausted, have increased symptoms and then have to recover from it. It is frightening, especially not knowing exactly what will happen if I leave it in there. Will I have permanent cognitive deficits? Will I have permanent vision loss? No one, including the surgeons, knows the answers to these questions.

My surgery is being scheduled for November at Memorial Hermann – Texas Medical Center. I will be in the hospital 2-3 days post-op and then will have to remain in the Houston area for two weeks before I am cleared to travel back home where healing and recovery continue, one day at a time. The hope is that I will come out of the surgery with improvement/resolution of my symptoms…without having gained any additional symptoms from the surgery itself.

That’s the update. I’m waiting to get my confirmed surgery date and will then be making arrangements for life in Houston for a few weeks. There is a light at the end of the tunnel and I’m getting closer to it!

To everyone who is willing to pray, or send positive energy, or good thoughts, I would greatly appreciate them. Please also send prayers for my husband, my daughters, and my family. I know this is very stressful for them. I wish it wasn’t. I wish I wasn’t going through this at all. But…go big or go home, right? Ironically, six years ago this week I went through a 5-level lumbar fusion, anterior and posterior approach, that I was told was the most difficult elective surgery anyone could ever have and I did amazingly well. So…I can do this! After all, my gray matter matters to me!

Objects in mirror are closer than they appear.

I’ve spent a lot of my adult life being a classroom student. From my early 30s to my early 40s I was enrolled at the University of Florida where I earned three degrees in nine years. I completed a B.S. in psychology with a minor in gerontology. I graduated with highest honors by successfully completing a research study on memory and aging that my advisors told me was worthy of graduate level work. I went on to complete MEd and EdS degrees in mental health counseling, also with a minor in gerontology. I did a practicum counseling with Alzheimer patients and their caregivers and I did an internship counseling with college students on campus. While doing all this I also served as a Hospice volunteer helping people with terminal illness and their caregivers.

A few years ago, as I was approaching 50, I decided to spend some more time in the classroom. After going through major spinal issues and surgeries that left me with other health issues as well, I decided to heal myself by studying holistic nutrition. I wanted to learn how to use nutrition to not only get back to health, but also how nutrition plays a role in keeping us from getting sick or having physical deterioration in the first place; nutrition as preventative medicine, if you will. I earned a CNTP (with a 4.0 GPA) and was one semester away from completing the MNT when I began to realize something was seriously wrong with my brain. Something had changed. I went from being a person who had an enormous capacity for learning to realizing I couldn’t remember the paragraph I had just read. I went from having learned how micro and macronutrients work at the cellular level to not being able to remember which nutrients are fat-soluble (basic knowledge for a nutritionist). The information had all been there, stored in my brain as knowledge, and then it began slipping away. It was very subtle at first, so subtle I wasn’t sure it was a problem until I began my independent research project in my last semester. I could not figure out how to apply what I had learned to solving a health problem because I couldn't remember what I had learned. Ironically, I had graduated college 14 years earlier with a 3.9 GPA and highest honors for my research on memory, but now I couldn’t remember the basic facts about nutrients that I had just been taught. My brain had started dumping information and it stopped allowing me to retain anything new. Something was very wrong.

At first I was worried I was experiencing early onset Alzheimer disease or some form of early dementia. This being a frightening concept, I didn’t go to my doctor to ask about it. I kept thinking it would get better. I looked for signs of other changes, or worsening of my memory, and over the past year things did get worse. By the time I finally sought answers with a doctor, I was also dealing with a host of other symptoms that have continued to worsen. I do not have Alzheimer disease. I have a 17mm pineal gland cyst sitting in the middle of my brain. Based on all the medical testing I have had over the past six months, there is nothing else wrong with me but the presence of the brain cyst.

Now I find myself a student once again, not in the classroom, but learning a subject from direct experience and trying to educate myself as much as I can about what I have and what I can do about it. I’m learning that brain cysts are very similar to brain tumors and traumatic brain injuries. A large brain cyst like mine can do damage to brain function that very much resembles dementia…memory loss, inability to do simple math, poor word recall, not knowing today’s date, and not being able to read and follow instructions. These cysts cause damage to eyesight. They negatively affect sleep. They make it so you cannot tolerate noise or chaos. They create tremendous fatigue and malaise. The constant brain fog makes me feel stupid and slow. And the worst part is how all of that combined is trying to steal my life and livelihood. I miss being active. I miss pursuing my interests. I miss being with people. I miss being a part of the world. I miss traveling. And the world goes on around me like nothing has happened, but something has happened to me and here is my current reality:

• I'm doing the best I can. I’m learning to say no, even when I really want to say yes. I know that if I overextend myself, using more energy than I really have available to me, I will pay for it with increased symptoms. It’s a learning curve.
• I feel much worse than I look. A brain cyst is an invisible illness. Most days if I take a shower and do my hair and get dressed and put on a little make-up I will look like I am fine. I’m not fine. The exterior is not an adequate representation of the interior.  I couldn't help defending myself the other day to a FedX store clerk when she scolded me on the dangers of having left my credit card in a fax machine and driving away from the store. I looked at her straight in the eye and calmly informed her "I have a brain tumor and I can't remember things." She became very apologetic, but I made the point that just because a person looks well, they may not be well.
• I’m scared. I’m trying to BE brave, ACT brave, but a brain mass that has no treatment option other than brain surgery is scary as hell, and so is doing nothing. If I leave the cyst in my brain I don’t know how bad my cognitive symptoms and vision loss will get or if they will become irreversible (or if they already have). If I have brain surgery I don’t know if I will get better or worse or die. These are all very real concerns that don’t make my decision process easy at all. Yet, I am in the process of making a very big, scary decision. I have a surgery date scheduled and I have a second opinion scheduled. And I don't know what to do. 
• Please, don’t take anything I do or don’t do personally. I know I forget the things you've told me. I know I don’t call you as much as I used to. I know we aren’t getting together to do things like we used to. This is in direct proportion to how I feel, not how I feel about you. I no longer have good days and bad days. Now I have bad days and worse days. But…I still want to hear from you. I still want to know about you and your life. I still want to keep in touch. I would love to sit and chat, have a cup of tea. I’m not dead, so I have that going for me (a little brain cyst humor)!
• I have hope. I hope to get well. I hope to get back to the life I was enjoying. I may never have that again, but I hope I will. I hope if I decide to have brain surgery that it will go very well, relieve all my symptoms, and leave me better off than I am now. I hope. I hope I make the right choice when I do choose. Objects in mirror are closer than they appear!

My greatest knowledge in all of my education did not come from a classroom. It came from my Hospice volunteer experience in my 30s. I learned that giving my time and compassion to helping someone in need, particularly someone at the end of life, is way more fulfilling than any job for which I ever got paid. I also learned from conversations with my hospice patients that by the time you get to the end of your life most of the things you have spent your precious time doing will not matter to you. You won’t be lying on your deathbed thinking, “I didn’t work hard enough” or “I didn’t earn enough.” What will matter will be the relationships in your life. You will be asking yourself, “did I love enough,” and “was I open to being loved enough?” It is this knowledge that I have been reflecting on a lot lately. Not because I feel I’m at the end of my life, but because I don’t want to wait until I’m there before I pay attention to what matters most.