Boobs or brains?
We are all familiar with breast cancer. We know the powerful slogans, we purchase the pink swag and it’s clear what a huge community there is for support through fundraising from walks, galas, and celebrity advocacy. And I truly think that is incredible. But folks, not all cancer is pink.My mom has oligodendroglioma. We were told we were “lucky” because of these rare tumors slow growing nature. Apparently, only around 3% of brain tumors are oligos. Life expectancy, approximately 12 years. Yah, we felt reaaaaal lucky.
But we were, we are. My mom is still here after battling this disease for the past TWENTY years! And only now are we told that there is nothing more that can be done. But I digress for a moment because to understand the end, you need to know the beginning. Brain cancer is an insidious disease. It started slowly, a seizure here and there, then one day my mom’s leg wasn’t working, which led to the use of a cane, then a walker, to ultimately complete paralysis on her right side which now requires a wheelchair. Chemotherapy, two rounds of radiation, and three craniotomies and fast forward to present day, where her seizures are commonplace, her left side has now weakened, and she has no comprehensive speech nor writing ability. 20 years of battling this cancer with everything we’ve got, and this is where we are. It just makes me wonder… if we had the same community, the same amount of support, the matched funds for medical research like breast cancer does, would my mom be walking, talking and have a better quality of life? I don’t think so. I KNOW so.
So my answer to the initial question at hand is this: boobs AND brains. Hell, isn’t all cancer worth advocating for? Yes, yes, it is.
In the hopes of bringing more awareness and to selfishly create a keepsake, I wanted to host a photoshoot that would be something special for my mom, as well as something I could use in the digital space to highlight the need for more action and starting the conversation to helping those understand brain cancer, specifically oligodendroglioma. I found an incredible photographer and she happily obliged to host this off the cusp idea of a photoshoot in a wig store. I could tell my mom was nervous the morning of, not knowing what to expect. I got her dressed in one of her favorite blouses, did her hair and makeup and we made a pit stop at our beloved Dunkin Donuts for some much-needed coffee before we took our jokingly coinedglamour shots. It turned out to be an incredible morning of laughs and fun paired with tears. We left the photoshoot so elated with how it went, excited about the photos to come, and the memories that were made.
We have been forced to look mortality in the eye and make the decision to succumb and mourn the anticipated loss of life or fight like hell by living life to its absolute fullest. So, naturally, we have chosen to live above the circumstances given. The idea of loss is shattering… for anyone who has or who is living in what can only be described as this place in-between, it changes you. But the thing that I have realized is, is that we are all in limbo together, walking on this tightrope not knowing if the next step will be the right one. And so, I suppose when it comes to living, do it well. Do it intentionally. Whenever possible, savor the moments, make the memories, celebrate today and every day. Drink the coffee, wear the lipstick, take the leap, and take the photos. I leave you with my mom’s mantra, “In all things be grateful, in all things be thankful.” Photo Credit: Angie Myers
When faced with a serious illness, especially cancer, you can scour the internet for what seems like forever, overly inundated with information and not all of that information is necessarily credible or up to date. Here are some reputable sites that serve as a great resource for brain cancer that I found to be helpful.
Oligo Nation An organization specifically created for those suffering from oligodendroglioma.
MD Anderson This medical institution is #1 in the country for cancer treatment and research. It is also the facility that has given our family so much hope over the past 20 years as my mom has battled this disease.
American Brain Tumor Association An organization dedicated to brain cancer education and fundraising.
Head for the Cure A fun way to get involved, network, and honor those who have been affected by brain cancer.
**Updated June 2018: My heart is broken as I share the news of my mother’s passing in the early evening on Wednesday, May 23, 2018. She was surrounded by everyone near and dear and fought like hell leading up to that point. In my mom’s final weeks, she was pain free, joyful, peaceful, and showed her love and appreciation in the simplest, smallest of ways. She was and still is so loved and forever missed.
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