By Gina Grosso
Losing your hair to chemo is a defeating, helpless feeling. Most of cancer is. You make choices controlled by a disease scarier than you can imagine no matter what stage you are at. There is never a time when fear isn't a part of your day-to-day. But also, under all that fear and unknown can be a thread of hope even when you have to make it yourself sometimes.
On Feb 28, 2020, I had a truly unbelievable experience: I made a sign asking my favorite baseball player on the San Diego Padres to sign my newly bald Chemo head AND HE DID! The idea came when I realized my bald head was basically a ball. A baseball. And baseballs get signed.
After getting Fernando Tatis Jrs'. signature my whole being was overwhelmed. Adrenaline was coursing through my veins as the crowd around me trying to get their own signatures grew. I made eye-contact with my boyfriend Jesse, made my way back to our group, and the emotions flooded through me. Excitement over what had happened, thankfulness that I was healthy enough to be there, and then weirdly that fear. At one point I turned to Jesse and said: “I don’t want to die.” He laughed a surprised giggle then realized I was being serious and hugged me as my eyes filled with tears. I was just so happy to be there. To be alive.
And that’s when that hope snuck its lovely way back in.
I HAD JUST GOT MY HEAD SIGNED. I was with people who truly love me. I got to go on a little hike and show the kids "silly hiking legs", I got to help my honorary 4-year-old nephew get baseball signatures at his first baseball game, I got to see Jesse’s nephew be the “play ball” kid and conquer his initial fear when they asked him, I got to sign our honorary two-year-old nieces little head when she wanted to be like me, we made it on the kiss cam, and I was going to get to tell my family the sign had worked.
Hope hopey hope hope!
Then as we were leaving an older gentleman stopped me to ask if he could give me a side hug and shared he was a 7-year cancer survivor himself. He told me he loved what I did that night. I thanked him for the inspiration. I told him I couldn't wait to get where he was. I wish I had gotten a picture with him too or could somehow be reconnected to hear more of his story. But his words of encouragement tore me open again and I couldn’t stop the tears as we left hiding my head in Jesse's shoulder as we walked out. It was too much.
How many other cancer survivors, current cancer fighters, and loved ones of cancer fighters were in that ballpark? Or in the comments section of the Instagram and Twitter posts that were starting to flood our phones? CANCER IS TOO MUCH!
I barely slept that night. My mind wouldn’t stop racing about the growing attention my sign and story was receiving. My notifications kept growing. It made it on ESPN. At the next game, my group of loved ones listened as I shared my idea: what if we could use this momentum to raise even more awareness for cancer, all cancer not just breast cancer which I have been diagnosed with twice after a recurrence followed by a double mastectomy and am currently receiving chemotherapy for in fear that microscopic cancer cells may be floating around in my body unable to be detected by our modern medical advances. What if something so simple as getting people to take power over their bald heads and have them signed, could do some good in the cancer community. I liken it to getting your cast signed as a kid, something I never “got” to do and lived out in a big way at that epic head singing moment!
I can report that I DID NOT wash my head that night. But I am sad to also report that when I told myself I would sleep on the idea of getting the signature tattooed on my head (it really isn’t safe for chemo patients to get cut during chemo and I wanted to ask my oncologist at today's appointment), my pillow and the hormone therapy (oh yes, I'm on that too) night sweats took that choice away from me. Also, your head is really oily naturally so that didn't help. Luckily we, and about 1,000,000 social media users have photographic evidence of this epic night in my cancer life. Now who do I talk to at Sharpie about this?
Those pens should really come with a chemo-head-signature “not so permanent “ warning.
On our five hour drive home to San Diego, Jesse and I brainstormed name ideas and logo ideas–it’s very helpful to have a live-in graphic designer boyfriend in the home! We thought of little details that snowballed into even more grandiose possibilities. But when we got home I realized I had my second round of chemotherapy and needed to put this growing seed of a dream away and prepare myself mentally for the next morning. I woke up scared (chemo sucks) and got as ready as I could. When I checked my messages I found even more emails from different media outlets wanting an interview. I won’t lie, I get nervous each time I think about it all. I’m very outgoing one-on-one, and very very outgoing with the children I work with as a Speech Language Pathologist, but once the spotlight is on I’m still working on being comfortable in my own skin…and voice…and facial expressions…and body movements. But this isn’t about me. This is about Cancer which impacts not only those at each Stage of a diagnosis but their loved ones and care team as well who watch their battle and help in whatever way they can.
Chemo_graph is more than just a fun way to possibly interact with a celebrity, it’s a way to show the world that while cancer may have made it so chemotherapy was your best option, and losing your hair is a mostly inevitable outcome, you can grab the bull by the bald head and do something fun with it.
After both of my breast cancer diagnoses, my life went from routine and predictable to chaos and uncertainty. It felt like the world as I knew it no longer existed. Workdays were filled with anxiety as I continued to operate as normally as possible while internally all I could think was Cancer-Cancer-Cancer. Outside of work, I obsessed over every detail I had from each step of the process. I spiraled deep into the internet finding articles and blogs and images that were a very sharp double-edged sword of informative and terrifying. When it was too much I would close my laptop and walk away only to return a few minutes later to search again. It was like a drug I couldn’t stop. It felt more comfortable to live in that dark internet place than in the scary new reality that waited for me in life.
Today as I write this COVID-19 has done the same to a lot of us.
Chemo_graph started after an incredible moment caught the hearts of thousands around the world. Focusing my energy on building a campaign to raise awareness for cancer gave me a renewed sense of purpose following my next rounds of chemotherapy. Between bouts of fatigue and nausea and body pain, I let myself have fun with the interviews. I was excited by everyone’s interest and the connections we made to expand and grow the Chemo_graph momentum. But as that momentum grew so did the news about the Coronavirus. The two were almost parallel in their development. Like a cartoon character with one foot on two separate trains, eyes-wide as my legs stretched apart from each other I tried to keep up with both Chemo_graph and COVID-19 as they veered away on their own separate tracks. For a while, I continued to try and make Chemo_graph happen by posting on Instagram but quickly it became obvious that everyone’s attention was, understandably, elsewhere during this crazy time.
Have I lost hope for Chemo_graph? Absolutely not! But I have accepted my ability to gain a following on Instagram and connect with more beautiful bald heads out there who may want to have their head signed is limited without outside help which, as of now, isn’t available. Frankly, I can’t seem to find the courage to directly ask other chemo patients to have their heads signed to raise Chemo_graph awareness. It feels intrusive to message someone I don’t know going through the hell that is Chemotherapy and ask them if they want to get involved. And any potential interest from more well-known signers couldn’t physically happen now even if I could get them on board. I still want to get more chemo heads signed. I still want Ellen or Alex Trebek or Brian Malarkey or Richard Blais or any other amazing celebrity out there to do a Chemo_graph. And I will still want that when it is safe to go out there and pound the (actual) pavement to do so.
Cancer hasn’t stopped just because COVID-19 started. And neither have I. Promise.