braintumorlife

Boxing with Bob

Have you noticed that when people survive life-threatening (perceived or real) situations, they suddenly start running marathons or climbing mountains? I have always been curious about that, whenever coming across an inspirational story about a survivor of some disaster who went on to achieve an awesome physical feat. Me, not so athletic. Hate the gym, running makes my knees hurt, I find cycling boring (shhh, don’t tell or I’ll get kicked out of Colorado) ain’t nobody got time for that. Aside from “hiking” (really just a stroll in the woods with my dog), I’m basically a slouch, thank you very much.

And then, there was Bob. Ok, it took me seven weeks after the discovery of Bob to find the motivation, but it was there, covered over by mountains of anxiety and the incessant need to sleep through my feelings.

I took my first ever boxing class this evening! I know, I’m amazed at myself too, and I know me better than you do. I felt so intimidated when I walked in, especially having gone alone (well, Bob’s always with me, so I guess I’m never alone.) But I was warmly welcomed and introduced. When asked about any medical conditions I laughed and said, “Other than the brain tumor, my left rotator cuff is a little tweaked.” Laughing while mentioning having a brain tumor really throws people.

I feel stronger already. As a friend said later, punching the sh*t out of something is very therapeutic. I’ll definitely be going back for more. Taking action to get stronger in body, mind, and spirit is life-affirming and gives me some sense of helping myself to heal.

Thank you for reading. More will be revealed…

Love & Light,

Dawn

“How are you?”

That has never been an easy question for me to answer, and now it’s nearly impossible. First, what is the intent of the person asking? Is this simply a polite greeting, to which one responds with, “great, how are you?” Is it a genuine interest or concern of how I am actually doing, physically or emotionally? How much time are you willing to give to listen to me figure out then explain how I am when you ask?

These days, “how are you?” is often paired with a look of deep sympathy when asked by a person who actually knows me and therefore knows about the Bob situation. It feels equally uncomfortable to look back at the sympathetic face asking the question and replying that I am doing well as it would be to reply that I am falling apart. And both answers are true, sometimes at the same exact time.

I’m doing pretty damn awesome. I am surrounded by love and support. I am learning to accept the unknown and letting go of my deep desire to control my life. I apparently have a great attitude (or so I’m told) and yet sometimes I am completely falling apart and have no idea whatsoever what I’m feeling and am terrified about having no control. Those are great napping times. All of this feeling of emotions is exhausting! And yet, I can’t sleep through the night.

I wake up in the middle of the night with a general sense of fear and anxiety, slowly coming to in my bed, part of me frustrated to find myself awake while it’s still dark out while some other part of me is yelling inside, “I have a brain tumor, my world is coming to an end, what does it all mean!?!” or something like that. When I gain enough consciousness, meditating on my breath usually helps me to fall back to sleep.

My typical answer to the “How are you?” question lately has been, “For right now, I’m feeling good.” That’s the best I can do, for right now.

Thank you for reading and for your love and support; more will be revealed…

Love & light,

Dawn

Slo-mo cliffhanger

Decided to buzz the left side of my head even though I am not getting the biopsy.

I was told by my neurosurgeon in my “pre-biopsy” appointment last Thursday that my recent PET scans and MRIs show that there are no tumors in my organs, lymph, or spine. That is truly awesome news. Thing is, I never suspected that there was any metastasis, so instead of feeling relieved, I was like, “well, DUH.”

The result of this fantastic news is a total game-plan-change, which took me so much by surprise that I felt like someone kicked me in the gut and pushed me down one of those really steep water slides. I guess I don’t handle change well. Or dealing with the unknown.

I was mostly on board with the whole poke-Bob-with-a-needle and find out what he’s really made of plan. I was mentally prepared to review the details and risks of the procedure, then go for it, as I was told three weeks ago that it would be scheduled this week. Then, presto-plan-change occurred in front of my eyes (envision the magician pulling a rabbit out of a hat, but instead of a hat, it’s your gut and instead of a rabbit, it’s your lunch).

Took some deep breaths, slept three hours when we got home from that appointment, spoke to many a friend and my mom, and finally came to the conclusion that instead of freaking out that THE PLAN changed… I can embrace the fact that no one is drilling into my skull this coming week (which, as he detailed the risks involved, frankly became much less appealing). That’s the good news, yippee. Surreal that THIS is now what is considered good news in my world.

So, countdown to 5 ½ more weeks until the next brain MRI (which will be a total of three months since the first peek). If Bob is behaving and not trying to take over the rest of my brain, he gets to chill up in there; if he is reproducing baby stars in his galaxy (i.e. growing) then, back to plan A, biopsy the bastard.

And so on… no growth, wait 3 months, MRI, rinse, repeat.

Soooo, more will be revealed… or not.

Dawn

Un/Real

Something shifted in my perception as I absorbed the words on the MRI report that day. As if a well worn cog suddenly slipped out of it’s groove and no longer fit in the machinery it was created for. I know how Dorothy must have felt as she peaked behind the Wizard’s curtain in the land of Oz, then awoke in her own bed as if it had all been a dream.

My jolt was sudden, permanent, and without my permission. For days, into weeks, nothing seemed real or important. I wasn’t even sure if there was a point to getting out of bed, eating, or attempting to converse. I felt uncaring, selfish, and detached from even those I loved most. I wanted to shout at everyone I encountered who asked politely and without any true concern, “How are you today?” (i.e. the grocer clerk), “I have a f*ing BRAIN TUMOR! How are you?” so I worked hard to (usually) keep my mouth shut and just nod semi-politely.

All at once, I could see the entire planet as if I were standing on the moon with a giant telescope, AND only the very center of my brain as if looking at it through a powerful microscope. Disorienting. A little bit.

The extremely self-centered portion of my ego believes that nothing outside of my brain, particularly my brain stem upon which Bob has made himself at home, matters at all; while the portion of out-of-body me up on the moon, sees the giant sparkly web (of course it’s sparkly, it’s still MY perception) connecting every being, every breath, every thought since Creation began.

I am in free-fall, alternately reaching out to cling to everything I knew and letting go with faith that all is as it should be.

I know that I am not alone in having an unexpected and sudden life-changing event. Writing it down may help me to process and integrate this shift.

As always, thank you for reading and being a part of my journey.
More will be revealed, it constantly is.

Love and gratitude, Dawn

Full of hot air

I expect the needle biopsy to go something like this: shave a little part of my scalp where the hole will be drilled (followed by some form of awesome 80’s haircut!), drill a little hole, out of which sparkly fairy dust will fly, slide the teeny but long needle down into my brain, resulting in a loud hissing sound of the release of hot air, and finally, the neurosurgeon exclaims, “Why Ms.Taylor, you are a medical wonder, there is nothing in your skull but hot air and fairy dust!”

Pre-biospy prep: I had my first PET scan today, which was easier to deal with than an MRI, as the tube is open on both ends and it doesn’t sound like your head is inside an amplified tumble dryer full of rocks. Hella more expensive though! I sure hope I hit my out of pocket max with my health insurance soon. They scanned from my forehead to the top of my thighs, looking at all of my lymph nodes and organs to make sure there is no metastasis. Then I get to go back for three additional MRIs tomorrow. My follow up with my neurosurgeon to review these results and discuss the biopsy will be next Thursday, with the stereotactic needle biopsy tentatively scheduled for the following week (two weeks from now). I’m hoping they record it so I can watch it later!

Pause for tumor-humor (if I already told you this one, just blame it on the brain tumor): My ex-boyfriend, become best friend, asked me awhile ago, “Is that a brain tumor, or are you just happy to see me?” He came up with a lot of great material that I hope I wrote down somewhere, and can remember where, because I can’t remember the stuff he came up with.

Well, my friends, thank you for reading. More will be revealed.

Love & light,

Dawn

A time of rest

I recently read an article in which the author referred to the depression she went into when she heard she had a life-threatening illness as a “time of deep rest.”

I am cautious about using the terms “depressed” or “depression” as they tend to be over-used and often misused terms to describe a feeling of grief, sadness, or malaise, usually with an identifiable cause. I have struggled with my own clinical major depressive disorder and it’s quite a different set of feelings when your brain chemistry is so out of whack that for absolutely no apparent reason you are listless, sad, anxious, and would rather be dead then open the mail or answer the phone. So when I mention that I have felt depressed at times since learning that I have a brain tumor, I believe that what I am really dealing with is shock, confusion, and overwhelm that is so exhausting that I would rather sleep all day than attempt the day-to-day business of life. It is exactly as though I need a time of deep rest to recover from this shock.

This is not a course I’ve ever navigated before, and there is no road map to refer to (I have a horrible sense of direction, even with a map anyways). I have bounced between the opinions of three highly qualified doctors, and I have received countless articles about brain tumor research and treatment found on the world wide inter-webs from well-meaning loved ones. I still don’t have a diagnosis and have decided (thanks to the tie-breaker doc #3) to proceed with getting a needle-biospy of this gunk to find out what the pathology is. Three to four more weeks from now, and we may have a clue as to how to proceed with treatment.

I miss my hysterical phase of coping… the time in which I could laugh and refer to the tumor as the Galaxy named Bob and hit on unsuspecting waiters. As I am going deeper into the trenches of my new current reality, I am simply exhausted. What I want is to go on big, thrill-seeking adventures. What I feel is a deep need for rest. Not to be mistaken for depression.

More will be revealed (now would be nice).

Thank you, with love,

Dawn

Anonymous angels

I boarded a full flight from Denver to Houston, the kind with no assigned seating, and found a middle seat not too far back. The usual chit chat was struck up by the gentleman on the aisle and it turns out that his wife, who was seated at the window on the other side of me, had just completed a year of aggressive breast cancer treatment at MD Anderson and is now cancer-free. They both raved about the level of care and medical expertise by the oncologists there, and assured me that I would be in excellent hands. I took this as a sign that I am definitely heading to the right place.

I stepped off the plane in Houston, and the first thing that caught my eye was a giant billboard above the terminal advertising MD Anderson Cancer Center. Yep, sign number two.

I then had an hour to wait for my mom’s flight from Florida to arrive. I took a comfortable seat at the back of a coffee shop and dug out all my electronic devices that had been “powered down and stowed under the seat in front of me for the duration of the flight.” I connected to the airport wi-fi and was pulling up my Pandora when I overheard three young men next to me discussing scholarly texts about the Bible. I became curious and asked if they happened to be seminary students. Two were pastors, and the other was a seminary student. They had been in Houston for a conference about building peace and justice centers in local communities, and the student was about to fly to Ferguson, MO to implement a program there. I introduced myself, dropped my brain tumor bomb at their feet, and boldly asked them to pray with and for me. I was very moved by their kindness to a complete stranger asking for spiritual help, and by their words of prayer as we sat huddled in a circle in the back of a crowded airport coffee shop. They then very humbly thanked ME, and gave me one of their email addresses to update them when I have more news.

I’ve heard many times that coincidences are God’s way of staying anonymous. I was sent many angels today to let me know that I am in the right place and that I will be healed.

More will be revealed… Love,

Dawn

Breathing into darkness

Remember that time I went ice climbing? I'm tougher than you, Bob! — Remember that time I went ice climbing? I’m way more determined than you, Bob!

It’s been one month and 4 days since finding out that I have a brain tumor. So far, I’ve had two doctors bring my MRI’s to tumor boards for consultation with neuro-oncology specialists in the last two weeks, and then fail to follow up with me. That is perhaps a good sign, maybe in the realm of brain tumors, mine’s not an urgent case. In my realm, however, it feels pretty damn urgent. This isn’t the first brain tumor the neuro-oncologists have seen, but it is my first and it’s in MY head. I like my brain-stem, and I hear it’s pretty important.

For the past month, I have had an amazing opportunity to move towards acceptance, faith, and patience. In between complete and total melt-downs, bouts of hysterical laughter, and unexpected anxiety attacks. It’s quite amazing how quickly I move in and out of detachment from or denial of my emotions. I am in continual flux between wanting to find escape though any form of immediate gratification, and embracing my current reality. I often don’t recognize what I am feeling or how I am coping with my feelings until hours after the shift.

Remembering to breath has been a big deal. Thank you to several friends who remind me of this on a daily basis. When I become consciously aware of my breath, I come back into my body in the present moment. In the present moment is where I find connection to the source of life deep within. In the present moment, I am in perfect health and peace. Plus, perhaps good ‘ol Bob doesn’t like oxygen in his galaxy. F.YOU BOB.

More will be revealed…

Dawn

How to date with a brain tumor…

Rule #1 – DON’T

Ain’t nobody got time for that! While dating would be a fantastic distraction (one of my favorite distractions of all time) that is all it would be, and most likely a destructive one at that. I have more important things going on right now that require my attention. Such as scheduling PET scans, getting second opinions from neuro-oncologists, and researching treatment options. Spending time with friends and family; paying attention to how I’m feeling; and blogging about the shit going through my head! Let’s not forget Saffie…

Rule #2 – When you break Rule #1, do so as a social experiment

So truth be told, the week after learning about my brain tumor, I posted two online dating profiles at the same time, using different user names, on Plenty of Fish. It was a pleasant distraction that turned into an interesting social experiment.

One profile was for “looking for a serious relationship” and the other was for “dating only, not looking for a commitment”. I did not mention the brain tumor in the “relationship” profile, but put it in the first line of the “dating only” profile.

Dude! Within an hour I had like 6 responses to my dating only profile in which I disclosed my brain tumor. Most of them were flat-out propositions of the like that I cannot share in detail here. My mom reads this! No, mom, I did not take any of them up on their inquiries. One guy just said hi and wished me well, and one other told me about his experience with his cancer, saying that he never talks to anyone about it anymore.

I did communicate via the website with a few guys, but then said goodbye and cancelled my profiles. Like I said, a minor distraction during the initial shock of hearing, “you have a brain tumor.”

In conclusion:

I was trying to prove to myself that I am date-able, therefore in my mind, love-able, even with a damn brain tumor. But there is nothing to prove. There is no outside validation needed. Not only am I love-able, I am a damn fine person/woman/child of God/stardust. Plus, I have a f*cking galaxy in my brain, how cool is that?!

More will be revealed…

Love, Dawn

The gift.

This is how quickly my attitude and outlook changes on a daily, sometimes hourly basis. In complete opposition to yesterday’s post, today I can see the gift of a brain tumor, the opportunity of any serious challenge that any of us face in life.

What has the galaxy of Bob-the-parasite-in-my-brain gifted me? The opportunity to heal and expand relationships within my family. The ability to reach out and ask for help. The awareness of how much I am loved and the vulnerability to accept that I am worthy of so much love and support.

The tumor is giving me even more opportunity to examine how I act out in life to escape my feelings, and by so acknowledging, the willingness to release these obsessive thoughts and behaviors.

I have deepened my connection with God, the Source of All, through prayer and meditation.

I still grapple with my shift in perception of Reality, but I know that it is a positive shift.

I am willing to release Bob back to the Source, and believe that it is so.

*the small print at the bottom of the page: thoughts and feelings subject to change without notice. I am a temperamental, delicate flower who is good at pretending to be strong.

More will be revealed…

Love, Dawn