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!