WHAT WE SHOULD ALL STRIVE TO DO: LIVE IN THE MOMENT. EMBRACE EVERY DAY BECAUSE TOMORROW IS NEVER PROMISED.
I feel it’s safe to say that anyone who has been affected by cancer is constantly living in a state of “What if?”
No matter how hard we try to live and embrace “staying in the present”, we’re engulfed by situations and/or people pulling us back to those “What ifs”.
The list is endless, but just a few examples are:
What if my tumor comes back?
What if my next scan shows “something”? (P.S. Scaniexty is real and it is terrible!)
What if I never regain the mobility I lost?
What if my hair never grows back?
What if I don’t want to undergo the treatment all these specialists are pushing on me?
What if my significant other won’t stay with me through this? Or, what if I’m dating someone new? Do I tell them I’m going through cancer treatment, or that I had cancer and guess what-I’m wearing a wig, and/or these clothes are hiding some seriously gnarly scars.
What if I want children in the future and the chemo that hopefully may save my life will force me to freeze my eggs or sperm? What if I don’t have the money for that because my insurance won’t cover the procedure?
What if I cannot work? What if I lose my medical insurance? What if I don’t even have insurance?
Of course, I cannot ignore the most terrifying question: What if I die from this?
Further, I cannot leave out all the “What ifs” our care partners and loved ones live with as they hold our hands through what I call this, “Cancer Chaos”.
What if I lose my wife, my husband, my partner, my sibling, my Mom or my Dad?
What if cancer takes my loved one’s ability to care for themselves? Will I have to quit my job to care for them?
Sometimes, I feel our care partners have it harder than us, as patients.
In the grand ole year that was 2020, I personally underwent 3 surgeries. The most recent was on October 9th and lasted 14 and a half hours. Heck, I was at least under anesthesia the whole time. Yet, my husband, my parents and all my loved ones just had to sit and wait to hear from the surgical teams about how it was going and whether it would be ultimately successful.
If that was me, I would have been crawling the walls!
However, October wasn’t our “first rodeo”.
Since my initial diagnosis of brain cancer (a Grade III anaplastic ependymoma to be specific) in April 2014, I’ve had some type of brain surgery…every… single… year with the exception of 2018. So, in 2019 just to make up for it, I guess, I had to get 2 more “surgery notches” under my belt! Then 2020 brought me the gift of 3 surgeries, as I mentioned above.
That was not the only “gift” 2020 #worstyeareva gave me. I was diagnosed with my 3rd bout of technically “brain cancer”. Yet, it’s not in my brain. Somehow those little bastard cells from my brain snuck out of the protective blood-brain barrier causing tumors in multiple neck lymph nodes and a major salivary gland, the parotid gland.
Oh, and if you’re not an anatomy expert just yet, since cancer patients need to be so many things at one time: their own advocate; researcher; doctor; insurance expert; secretary; pharmacist; etc. Our facial nerves wrap all around our parotid gland. So, the surgeon had to remove the entire gland while trying to save my facial nerves. That procedure also required taking a graft from my thigh plus a nerve. Hence, a 14.5 hour surgery.
There’s only approximately 20-25 reported cases of this happening. Ever. I always knew I was special! I’d prefer to be special in other ways… nevertheless this is my reality.
I’m truly like “Humpty Dumpty”. They’ve taken parts from various areas and tried to put me “back together again”! After a 12-hour surgery, 1/3 of my scalp is a graft from my abdomen. Now, my neck is made up of the skin from my left thigh. I also think of myself as “Mrs. Potato Head”.
It’s hard to say, but I’m now considered a Stage IV patient. I’ve got teams of doctors at Memorial Sloan Kettering and NYU in New York. I’m also working with a specialist at Duke. Even the NIH is studying my case and consulting about my treatments.
Upon hearing my full story, without fail people ask, “How do you get through all of it?”
Amongst other things, like my family, my friends, my tribe…I use “presence”.
I refuse to focus on all those “What ifs?” It would only bring me to that “dark place” inside my head. It isn’t just damaging to my mental health. It makes me physically weak. In order to have survived 9 surgeries, 3 bouts of a severely rare, aggressive cancer I need to be healthy in all aspects – physically, mentally, emotionally, spiritually, etc.
If I leave “the present moment”, I simply retreat into the darkest corners of my mind. Once I’m there, it is beyond challenging to pull myself out of the darkness.
I’m not the Dali Lama though. I’m only human and sometimes, I have my meltdown days. As long as it’s not harmful though, it’s okay to just cry, lay on the couch and wish Netflix wasn’t judging: “YES, I’m STILL watching, okay!”.
Even without cancer, we naturally worry about our futures, or think about the past.
Ending little anecdote.
Back in August 2015, 2-months post my 2nd brain surgery, I was cleared to attend my long-awaited First Descents camp. We went white-water kayaking in Oregon. Our first night, I was hanging out in the main house with my fellow campers. Even though we were all total strangers, it immediately felt like a “safe place” to open-up to other YAs who had had cancer. One particular camper, nicknamed, “G-String” and I immediately bonded.
He’s a quirky, fabulously talented violist. The nickname came about because of the “G” string on a violin, in case you were wondering…
Back to the point- he told me about his ordeal with testicular cancer. He said I was literally the first person he ever spoke to about his cancer experience besides his family. He opened-up about his fears of dating and how he was afraid girls would judge him.
I said, “I’m married, but I understand. Although, if I was single and someone could not accept my cancer experience, then they’re not the one. I don’t want to be lying on my death bed thinking to myself, “I should have taken the chance or I wish I had done this or that. Tomorrow isn’t promised. So take the chance. It took me getting cancer to realize it, but it’s true.”
He actually told that story to a girl on their 1st date. I got out of the hospital and was able to fly out to their wedding in Colorado in February 2020!
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.