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!