braintumorlife

I haven’t written in a while because I haven’t been able to find my humor, which my earlier posts were full of.  The sense of relief that I felt when the neuro-oncologist told me she believes this tumor is a grade-one, slow growing, non-malignant type has vanished.  I am left with no answers and more questions.  Best case scenario is just that.  I have a brain tumor, and considering that it may not be an aggressive, malignant bastard, it is still an unwelcome parasite in the deepest part of my brain.  So yeah, I’m still whirling in emotional turmoil. My life is not back to “normal” whatever the fuck that is anyways.

I’m not sure if anyone truly feels normal, average, or a sense of real belonging, though it seems to be a societal expectation or goal.  I have struggled with clinical depression and alcoholism for most of my life, along with a chronic feeling of general discomfort in my skin and in the life all around me.  I’ve worked really hard to overcome the obstacles both within and without in my life so far.  My depression is managed with counseling and medication, and I have been sober since January 31, 1997 by fully immersing myself in a program of recovery with other recovering alcoholics. As a result of both, I have found a sense of ease and comfort that I hadn’t thought was possible.

I have a life of gratitude, joy, faith, and service today; yet for the past three weeks, I still would like to spend most of my days in bed with my dog.  It takes a sometimes insurmountable measure of energy to interact with people.  I have a dialog in my head telling me that nothing matters in this life, which makes it difficult to have conversations.  It may sound like I am in self-pity.  I guarantee you that is not the case.  There were one or two times in the beginning where I would say, “why me?” but there is no point to that question.  I am trying to make sense of my shifting perception of reality.

More will be revealed…

In faith and gratitude,

Dawn

I’m sure I’m not alone in not wanting to feel “bad” emotions, such as fear, anger, sadness, etc.  Years ago I developed my personal method of achieving Detachment Level: Expert.  The problem is that it has practically become an instinct to detach from my physical self when I am emotionally disturbed, which although no longer serves me well, is a tough habit to shake.

I bring this up because the last two weeks have been such an emotional rollercoaster that even though the most recent doctor that I saw had relatively good news, I am still in shock from the original bad news.  I feel like I am underwater, trying to break the surface to catch a breath and look for the shore.  I know it’s there, as much as I know I’m going to get through this, but I just can’t see it yet.  I am in a bubble of un-reality.  Nothing in the “Real World” makes any sense to me right now.

I have told myself that I need to stay positive and have faith, I have been told (kindly) by others that I am strong and have a great attitude; and I received good news. Now I expect myself to feel the same way I felt just two weeks ago, before being told that I have a brain tumor. Then I engage in “Real World” activities to get back into the stream of life, such as going to share a meal with a friend, or going to work.  And none of it makes any sense. Sort of like Charlie Brown’s teacher, bwah bwah bwah bwah bwah bwah.

I tell myself that I’m fine, convince my conscious mind that I believe it, then my subconscious mind lets my body know that it’s bullshit.  Because although I can and do emotionally detach from my body when the feelings of fear and anger boil up, my body tunes right into the truth of what I am actually feeling and lets me know through getting nauseas, crying for “no apparent reason”, and having full on anxiety attacks.

Clearly, denial is not working for me.  While I don’t want to dwell in fear and anger, denial of those feelings actually keeps them stuck in me longer, and the fall-out is downright unpleasant!

My challenge to myself:  Become aware without judgement of what I am really feeling as the emotion comes up.  Allow the emotions instead of telling myself that I shouldn’t be feeling this way, or trying to push them down.  Breathe deeply into my body, following my breath consciously, allowing my breath to keep my mind rooted to my body, and my mind in the present moment.  Accept the feelings without attaching to them. Let go of the story around the emotions.  Allow myself the experience letting go of the emotions without detaching from myself or denying what I am feeling.  Phew, that’s gonna take some practice!

As always, thank you for reading, and more will be revealed.

Dawn (and Bob)

When I was a little kiddo, I sometimes enjoyed such vivid, fantastical dreams that I could almost convince myself that my dreams were real life and my waking life was just a dream.  Perhaps I was not so far from the truth?

Today, getting back to my Real Life, I lasted only 3 hours at work before the numbers on the computer screen began to run together and I felt I would fall asleep sitting upright.  It was a valiant effort, if I do say so myself, considering the spin-cycle that my emotional life has been on for the past two weeks!  And, you know, there’s Bob… just hanging out, making himself comfortable for the long haul.  I asked my supervisor if we could add Bob to the payroll since he’ll be working right along with me. No-go. So I guess I’ll need to build up my work-day endurance and earn the income for both of us.  Leach.  All he wants to do is nap all day.  Imagine that, trying to keep an entire F*ing galaxy awake in your brain! I’d better up my quota of coffee. And bacon. I’m pretty sure Bob is the one behind my obsessive thoughts of bacon. Well, that, and pigs are delicious.

Holy crap, it just occurred to me that maybe all those fantastical dreams were messages from Bob! Damn, I wish I had written them down.  BOB, Bob, Bob, Bob, hey BOB! Make me dream of flying again!! Those were my favorites, soaring freely just above the tree line, such freedom!

Real Life? I’m not so sure how I feel about that now.

More will be revealed…

Dawn

So, I’m in a state of euphoric shock still. I finally saw the neuro-oncologist today, twelve days after finding out that there is a tumor hanging out on my brain-stem.  After seeing my neurologist who looked at me like he just ran over my cat when he broke the news to me, and a neuro-surgeon who was telling me about the different options to open my skull or poke holes in it to get a sample of Bob for a biopsy.  And, let’s not forget my own consultation with Dr. Google.

The neuro-oncologist, the specialist who analyzes brain tumors daily and diagnosis this shit, thinks that good ol’ Bob has been with me for a very long time, just slowly growing with no aggressive tendencies. She sees no need, for now, to try to take a chunk of Bob for the lab to examine, but we will keep a watchful eye on him. Rather she will, all I see is a glowing marble who I now refer to in third person.

Follow up MRI in three months to see if he’s had any growth-spurts… other than that, back to daily living. With an entirely new perspective.  So, thanks Bob.

Thank you all for your support, love, prayers, and good mojo!

More will be revealed…

Love,

Dawn

… I gotta wear shades!

(entry started on 4/12/15)

Today has been a fantastic day!  It’s a feeling that I no longer take for granted, or let slip past me.  I want to yell from my rooftop, “It’s a beautiful, sunshiney, awesome spring day, everybody!”  Even IF my mom thinks the word “awesome” is over-used. It is a day in which I only napped once, and for less than an hour.  My mom took Saffie and I out to Chattfield off-leash dog park, and it was a 70 degree (F) day of sunshine with beautiful cloud formations. It was a day when I only thought about Bob dozens of times and not hundreds, in which I could eat without feeling nausea from anxiety of what’s to come.  I truly felt present, in my body, and in the moment most of the day, and fully enjoyed it!  I wish for you all to have many days such as this, staying present, staying in your body, looking at your where your feet are and not into the fears and worries of the future. Today is the only day we can do anything about, and today can be beautiful!

Thank you for reading! More will be revealed…

Dawn & Saffie

For those of you who may not know, I have been sober from alcohol and drugs since January 31, 1997.  18 years, that’s a lifetime, and feels like several. There is a little mind-game that every sober alcoholic I know plays, called, “I would drink again if____________.”  Also know as “If ___________ happened, I would get drunk over it.”

In the beginning of my journey into sobriety, I would want to drink for really big important reasons, like it happened to be Tuesday and I had managed to stay at work for the entire day; or I stubbed a toe. Going to the grocery store was a big trigger, the beer was in the same aisle as the bread.

I spent countless nights wondering how I would get married and not drink champagne, or go to someone else’s wedding and not drink alcohol.  I agonized over whether or not I would invite my actively drinking alcoholic father to my wedding. I was single during many of these sleepless nights, no fiance waiting in the wings.  My dad has since died, and I’m still not married, so I sorta just side-stepped that whole dilemma, at the same time proving to myself yet again that fear of future events is a waste of time.

Yet here I am, day after day, full of fear about the future.  Ever since reading that stupid MRI report 12 days ago, my mind has lived in a mansion of What-Ifs. Not all-day every-day, but at least a hundred times a day. I step into the fun-house and stare at my warped reflection in the distorted mirrors, i loose my balance on the spinning, tilting floors, and run from the mad, mad clowns.  Then I nap.  I nap for hours, drifting into a blissful state of non-thinking. Each time I awake, I am startled again by the remembering. I have a brain tumor.

This would not have even occurred to me as a possibility on the “What would you drink over” game.

When I went to my psychiatrist with my involuntary movement symptoms, and he suggested that I see a neurologist for an MRI, “and make it a high priority.” That, hearing that, stirred the desire to throw back some whiskey to blot out my fear.

However, the words, “You have a brain tumor.” Well, fuck drinking, I’ve got some serious shit to do! Like post more pictures of my dog on Facebook.

Thanks for reading along with me.  More will be revealed…

Dawn

I guess this is time to practice being comfortable in the unknown and letting go of the story.

My entourage and I sat in the neurosurgeon’s office yesterday afternoon learning a great deal about these fascinating pictures of the brain. He used words like bifurcation and hydrocephalus, and pointed out little passageways and cranial nerves. It was truly amazing.  I wrote a lot of words down but now when I try to look them up, I spelled most of them so incorrectly that my spell-check is permanently damaged.

Watching the doctor whirl through these images and explain the nooks and crannies was so cool. it was like being on an episode of Grey’s Anatomy.  Then life would come into bitter-sharp focus and I would say to myself, “that’s MY brain and MY brain tumor he’s discussing,” and suddenly the lint on my sweatshirt was the most fascinating thing I’d ever seen.

I would lean in, eyes wide open, and say, “wow, really, you can just remove the temporal part of the skull and stick a big needle right through the brain, scoop some of that tumor out, pop a drain in for that extra fluid, and close it back up?” That’s SO cool…. oh shit, that’s MY brain we are talking about. And then the list of risks, which I am not listing here, thank you very much.

This dude will present my case to his team of specialists when they meet again in two weeks.

Next step: meeting a Neuro-Oncologist on Monday (she’s coming in special for me on her day off!), schedule a full-body PET scan and spinal cord MRI.  If this damn leach started anywhere else, then they can biopsy that spot first to see what it is and skip the whole big needle-through-my-brain part.  Then again, that would also mean that I have a metastasizing cancer, which I’ve heard really sucks the big one. At any rate the neuro-onc will also present my case to her team. And… you know, more will be revealed…

So, I get to do my best to keep both feet and mind in today, and not hop on that future train. Right now, I am healthy, and the only thing hurting is my stupid sprained wrist! Damn, life is good, ya’ll!

Thanks for reading along.

Dawn

What a bonding moment with mom… I just assigned her durable power of attorney for my healthcare and we filled out my advanced directive/living will together after a delicious bowl of home-made soup; Thank God we share the same philosophy on end-of-life medical care, that could have gotten ugly.  OK, not that I’m planning on getting the plug pulled anytime soon, because we have some major ass-whooping to do, but just in case.  I wasn’t really counting on a brain tumor either, so one can only be so prepared.  This goes right along with registering over the phone for my neuro-oncology appointment and being asked to proved the name and number for my next of kin.  I thought that was getting a little ahead of themselves.  Downright tacky.

I’m no queen of etiquette, but could you buy me a drink before we get that personal?  Not that I would drink it.  I haven’t had a sip of alcohol in over 18 years, and maybe if Bob’s an alcoholic, he’ll scootch right out through my ear and mosey over to the nearest bar.  That would be a neat trick!

I have never been great at expressing anger in a constructive way, or even recognizing the feeling at all before it builds up for so long that I erupt like a volcano, spewing molten lava and ash on anyone unfortunate enough to be near me at that magical moment.

More often, when I feel a niggling of “anger”, I begin to blame myself for the situation, shove it down, and wonder what I did wrong.  I begin to punish myself with “I shouldn’t feel this way” and “what’s wrong with me?”

Then Bob came along.  And while I get the whole staying positive and having faith thing, I am also one pissed off, angry, fuck this chic right now.  I mean, right now as in when I took that lovely bed-head, middle fingered selfie this morning.  It was more of a fleeting anger, with a sweet promise of more to come.  And I didn’t get disappointed in myself for feeling it, I didn’t try to shove it down or put on a happy face and pretend that everything is just FINE dammit.  Because it’s really not.  I have a fucking brain tumor people.

A few days ago when I had another mood swing from Zen-delicious to shit-sandwich, a wise friend said:

We don’t have to attach ourselves to how we felt yesterday, or try to recreate it.  Today is a new day of feelings and thoughts, all we have to do is shine a light of awareness.  Be gentle to yourself.  Feelings are impermanent, our thoughts will flee under the light of awareness.

Pretty cool, huh?

Oh, and say it with me, F you, Bob!

Thank you for reading along… more will be revealed (for realsies, neurosurgeon consult tomorrow afternoon)

Dawn

The look on my neurologist’s face as he greeted me in the waiting room said it all.  He had bad news to tell me and was very sympathetic about it.

The short version is that I have been referred to a neuro-oncologist at Anschutz (LMAO, my spell-check just suggested Chutzpah as the correct spelling!) Medical Center at the University of Colorado.  Sounds impressive, right? Hey, we don’t mess around with the girl carrying around a whole galaxy in her brain! They all wanna check it out! After they get a peek, I am to hustle my little ass (literally) over to The Best in the Nation for treatment, which apparently Is still to be determined depending on a diagnosis of what the hell Bob is and what he’s doing in there.

Being that Bob is located in my brain-stem, the neuro-dude-ologist will have to determine whether they will be able to biopsy the son-of-a-bitch, so that they can figure some stuff out. They will also do a full-body scan to look at all my kibbles-n-bits to rule out any friends-of-Bob partying down in my insides.  Highly unlikely due to the look of the marble/universe named Bob, but one can never be too careful. Sneaky little buggers.

I hope all the docs in my future have a better poker face.  No more doe-eyed sympathetic men delivering crap news.

The good news: We are not referring to Bob as the C-Word yet, and I have a script for Valium.  Perks.

Thank you for reading along, it helps me get this off my mind.  I have a big fight ahead, but I am confident that I’ll come through the other side.

More will be revealed…

Dawn