After we received my biopsy results and learned that a craniotomy was imminent, I decided to create a closed Facebook group to keep friends and family in the know about the situation. Looking back, it seems I returned home from that first week in the hospital with my “offbeat sense of humor” fully intact.
When I heard I had an Oligodendroglioma brain tumor I just knew I had to launch a tumor naming contest, so we could rename that sucker to something a person not in the medical profession could pronounce.
At the time, I joked that I would be writing a book called Having Fun with Your Brain Tumor and I stated whoever won the contest would receive a free signed copy.
[Following was my original post in the closed Facebook group from November 12, 2014]:
And the winner of the Name My Brain Tumor Contest is…
S.P.O.T (Santana’s Perishing Oligodendroglioma Tumor) by Jenn M.
This was a late entry and probably should have been disqualified but it perfectly captures Lady Macbeth’s quote from Shakespeare. Too bad I can’t avoid surgery by washing S.P.O.T out.
Thank you again for all the great submissions. This was a close call and I was genuinely surprised by some of the lobbying that took place.
Following is a list of additional late entries that were submitted:
Dontwantadis tumor: by Steve H.
Bubble of Rubble: by Luis S.
Steve from Minecraft: by Noe S.
Ulva: by Abram T.
[The following post was shared on November 8, 2014]:
Hi everyone. Thanks so much for participating in the contest to Name my Brain Tumor. Following is a summary of the entries. This is a close call, so I would now like to give you a chance to vote. A final decision will be made by 8 pm on Monday (11/10):
Princess “O”: by Kirsten J.
Princess O, Princess Olia, or Princess Ollie: by Kirsten J.
Ollie (Ollie See You Later): by Gina V.
Olioma: by Viviana B.
Oli D. (at the end you can shout, “Oli Oli out & free): by Jenn M.
Marvin the Brain Martian: by Julie H.
Mamacita: by Julie C.
Pinky and the Brain –Tumor: by Bonnie H.
Tiger Manning: by Bonnie H. (Note: this was the runner-up. It was pretty clever since by this point my neurosurgeon said the tumor was the “size of a golf ball but shaped like a football”).
No Way (as in No Way it’s Gonna Win): by Abram T.
Savannah Santana: by Monica C.
Rosanna–Susanna-Savannah Santana: by Wendy
Shemezal Shamazel: by Diann Z.
Arnold: by Janine T.
Scarlett: by Stephanie M.
Humor Tumor: by Al I.
Just Visiting: by Al I.
Diamond: by Noé S.
One Tough Cookie: by Len & Wayne H.
The VIKING: by Len & Wayne H.
Grace: by Len & Wayne H.
Bubble of Trouble: by Luis S.
PITA (Pain In The A**): by Craig A. (a.k.a GAMPS)
[I was enjoying putting others at ease and making them laugh. As ridiculous as this may sound I even went so far as to (hypothetically) outline the first 18 chapters (of my hypothetical book) as shared in my posts on November 8 and 9, 2014]:
Who will win the free copy of Having Fun with Your Brain Tumor?
Chapter One: “A tribute to my hero — my cousin, Alexis”
Perhaps you saw her story on “The Doctors” or “20/20” or in “People” magazine. When she was nine-years-old, Alexis was diagnosed with a Craniopharyngioma brain tumor found near her pituitary gland. Her parents, Jenny and Ian are two of the strongest people I know. Her journey has been difficult, and she is the ultimate survivor. I am inspired by her and so proud of all she has overcome. Our tumors are completely different and supposedly brain tumors are not genetic, so this seems to be a weird coincidence, but I am told Alexis says we are “tumor sisters” and I am proud to be a member of her family.
Chapter Two: “Strange Cravings”
For some reason after the biopsy, I couldn’t get enough cottage cheese (small curd, low fat) upon returning home from the hospital. Then, I started craving sauerkraut. It started with sauerkraut in my matzo-ball soup and progressed to sauerkraut on my Ramen. I eventually ended up adding it to the special lasagna prepared by our friend Abram.
Chapter Three: “Honey-do List vs. Medical Directives”
Since we already prepared an estate plan a few years ago and that included medical directives, I substituted the directives this time with a honey-do list.
Chapter Four: “Brain Tumor Discount”
Why let your brain tumor work you when you can work your brain tumor? I began by asking for a brain tumor discount for a future tenting of our house this week… because, hey, why not?
Chapter Five: “Scandal is so Scandalous”
Part of surviving a brain tumor involves maintaining a good level of denial. I try to drown out my thoughts with shows I never had time to watch before. I’ve discovered Scandal and can’t get enough of it. Kerry Washington is amazing!
Chapter Six: “Blame it on the Brain Tumor”
I’d like to take this opportunity to clarify this is a slow-growing brain tumor and we have no idea how long I’ve had it. Therefore, I think it is only fair that I blame any of my wrong doings or missteps during the last decade on the brain tumor (soon to be named by one of you).
Chapter Seven: “I’m addicted to my Soap Opera, and yet I can’t stand it”
It’s as if I have a 1 pm meeting with “Days of our Lives” each day. I fall asleep watching it half of the time and usually can’t wait for it to end, but I show up each day like a loyal puppy just because I can.
Chapter Eight: “Finally the Center of Attention”
A theater major in college, it seems I have always craved center stage and now I finally have it. Who knew?
Chapter Nine: “My Tumor has a Support System and So Do I”
I’m so grateful for all the friends and family members who are still here for me even though I have neglected them all for so long while I was busy wasting my life away as a workaholic.
Chapter Ten: “Name that Brain Tumor”
Giving your closest friends and family members the opportunity to buy into your healing process through the chance to name that nasty thing in your head causing all those seizures and headaches and so forth.
Chapter Eleven: “A tribute to my other hero–my stepmom, Pat”
Diagnosed with a rare cancer when she was just a year older than I am now, Pat was given only two years to live and that was 20 years ago! She was treated at UCLA and has been instrumental in guiding us. Pat has been my mentor, friend, and champion throughout my entire adult life and I love her more than words can describe.
Chapter Twelve: “A name has been selected, but have I been upstaged by my tumor?”
Ensuring the stage is set for the tumor to fail.
Chapter Thirteen: “next steps”
Obtaining a craniotomy clearance from my primary doctor and back to UCLA for a “functional MRI,” “brain MRI” and “language evaluation.” This will help my surgeon with brain mapping based on the precise location of the tumor (left frontal lobe).
Chapter Fourteen: “Getting ready for Surgery”
Hair, nails, a good shave and cute pajamas are all a definite must!
Chapter Fifteen: “Help me maintain my vanity”
Visitors must bring tweezers and be prepared to use them.
Chapter Sixteen: “After the Surgery, preparing the dog and other family members for what to expect”
I may not have the ability to speak for several weeks, months or longer. I may also lose some motor function on the right side. It is possible that radiation and/or chemotherapy may be necessary. I will be fortunate though to receive excellent follow-up care with speech and physical therapy from Long Beach Memorial. I am also grateful for the continued support and love that will be provided to our family by friends and neighbors.
Chapter Seventeen: “The Benefits of Suffering”
With contributions by Abram T. about how “suffering brings you directly into your human condition of which comes a profound appreciation of each moment with perspective and vitality.”
Chapter Eighteen: “The Victory Lap”
With contributions By Al I.