I really just needed a good excuse to post this picture of me with my brother, Chad, from my recent visit to see him and his kids. For the record, this was not a planned pose… we were goofing around while a friend was snapping photos, and this is what happened. To me, Chad looks like a zombie who is completely uninterested in eating my brains.
Obviously, one of Bob’s surely many purposes is to save me from the impending zombie apocalypse that everyone keeps talking about. So, there’s that. My brains are safe with Bob on guard.
On another note, there’s the below statistic and an apparent need for more funding into brain tumor research:
That’s all for tonight… just showing off my awesome big brother! Shout out to Chad, you rock bro! Thanks for keeping me laughing.
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.
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…
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.
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.
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.