Tuesday, 5. July 2011 20:45
In January 2011, my friend and talented writer, Christine Fugate was diagnosed with Stage 2B Invasive Ductal Carcinoma in her left breast and lymph nodes. Within two weeks, she had a double mastectomy and 16 lymph nodes removed. She is undergoing chemotherapy and will complete six weeks of radiation by the end of the year. She posts a private blog, which she says, “is my therapy, my retreat, my sharing of a journey through Cancerland.” She and her hubby have two school age children, Sara and Caterina. Christine also has a few wigs, one in particular is named “Tina.”
Her latest post was so compelling that I asked her if I might share it in my blog, 7 Layer Living. She agreed. Many thanks to Christine for reminding me to show up and for sharing her beautiful soul with the rest of us.
Showing Off or Showing Up?
by Christine Fugate
I feel like I crossed the finish line last week after showing up for Sara’s school play (she played Claudine Cooter, the nosy neighbor); Caterina’s tap dance recital (2 1/2 hours with no air conditioning); Sara’s jazz and hip-hop recital (2 hours no air conditioning and no wig); Caterina’s fifth grade graduation (7 a.m. wake up call) and an infusion of Taxol, my new chemo medication (five hours in a chair). It was a week filled with so many blessings and wonderful events. I was thrilled I could crawl out of bed, stand upright and move from seat to seat.
Each evening’s the topic of discussion was ‘What is mom going to wear on her head for tomorrow’s event?’ For the school play, I wore wig Tina and a beret, Sara’s first choice. For both dance recitals, I wore a green scarf. Hubby saw me sweating so much during the second recital, he pulled the scarf off my head, much to Sara’s dissatisfaction.
For the graduation, Caterina requested that I wear the pink wig. I felt a little reluctant about it, not wanting to draw attention to myself, but it became a whole thing in our house. We found a dress, shoes and even nail polish to match the wig. Pink. Pink. Pink. Thank goodness the theme was Hawaiian.
Getting dressed that morning, I started to get anxious and have a hot flash, but I told myself, “It’s Caterina’s day, not mine.”
Sure enough, when I walked into the auditorium, I heard a dad say, “What’s with the pink wig?”
A woman leaned over and whispered, “She has breast cancer.”
Oh boy, I sighed, why did I have to have such good hearing? I put a smile on my face and sat down. Watching the faces of the children singing and hugging their teachers upon receipt of their ‘diplomas’ was beautiful. I got teary eyed but was able to contain myself. If those floodgates opened, I knew there would loud sobs coming from our seats.
At the breakfast reception, I saw friends who hadn’t seen me in the pink wig. The comments started to flow, ranging from, “You look like you are out of Vogue magazine” to “My mom wanted to know who’s the pink Carol Channing.”
I noticed some friends looking at me and smiling at me. “We were just saying that you shouldn’t be so shy. You need to draw more attention to yourself,” they laughed.
Funny? Maybe to the old Christine, but not the new one. “This is what Caterina wanted. Her request for the pink wig,” I lamely replied. It was clear I had sadly lost my sense of humor.
Back home, I felt that searing burn of loneliness that comes with fighting cancer.
“Have I lost my sense of humor?” I asked hubby, questioning whether this joyride through Cancer Land had also taken my ability to appreciate irony and sarcasm.
“No, it’s just different now. People just don’t understand how much effort it takes for you to be in the normal world.”
He was right. There was a gap in what people said. Otherwise why would you say: ‘My good friend died of breast cancer;’ ”My neighbor has been fighting it for fourteen years;’ There is a reason for your cancer;’ or my personal favorite; ‘It was meant to be.’ Of course, no one means to hurt my feelings. Everyone means well. I got it. I never used to know what to say.
The one I used to ask cancer patients was ‘What can I do for you? I want to help.’ Asking that is like asking a baby to explain how to change a diaper. We have no idea what to say. Or at least I don’t. Sure I could spit out some sarcasm like ‘Invent an anti-body to invasive ductal carncinoma’ or ‘Introduce me to George Clooney and his Italian villa,’ but those aren’t realistic.
I think the best things to say to someone with cancer are, ‘It’s great to see you up and about’ and ‘I’ve been thinking about you.’ ‘You look beautiful’ never hurt a bald person either.
If you really want to help someone, then DO something. Bring a hot meal, arrange a play date, send a card, post a comment, share a funny movie, bring chocolate.
But what do I know? I am an awful conversationalist and isolationist these days. I can only do so much small talk about politics, Pilates and parenting the tweenager. I can do big topics like the pros and cons of radiation or green tea, but after awhile I tire of that, too.
I also struggle with reading social cues. When someone asks me how my new chemo was, do they really want to know? Do they want to know that my two baby toes are starting to go numb and I’m terrified that the feeling won’t come back? Or that every time I eat, my stomach protests? Should I share they while my nausea is better it hurts to lift my arms and legs? That kind of info is a buzz kill on a perfectly fine summer day.
If someone told me that, I would want to make them laugh with ‘ Who needs ten toes anyway?’ ‘Who needs to eat when you can drink pina coladas?’ ‘I’ve always thought walking was overrated?’ (You can tell, I’m kind of obsessed with my feet going numb! I did speak with Nurse Arla today who told me that the feeling will come back around six months after my chemo has ended.) But who ever thinks of those funnies on the spot? Not me.
That’s why I usually reply, “Chemo was okay.”
The good news is I’m about to gain 20 lbs. (Ah! Some sarcasm.) I have to take heavy steroids with Taxol, to prevent an allergic reaction. Most of my chemo friends have gained at least 20 pounds on it, saying it’s inevitable.
Fat and bald. Oh boy, I can hardly wait for the fun.
I obviously need to take Meg’s advice and start puffing away on the medicinal marijuana. The only problem is I get the munchies. Puffing to puff up. Seems like some kind of vicious circle.
I don’t know what I’m rambling on about in this post, except that I have realized that I am a not a shy person with a cancer. I am not going to put on a normal colored wig and pretend that nothing is wrong with me, that daily life is not incredibly difficult. By being out there with it, I am not saying look at me, I have cancer. I’m not trying to make a statement or educate the world. I’m just trying to have fun with something that is incredibly painful.
I cross the finish line everyday in showing up for myself, my girls and my husband. It’s harder that I’ve ever worked. I often fantasize about the days I used to travel on my own. My only responsibilities were my backpack and a place to sleep. But then I remember that the only thing I ever wanted was my own family. Which thank goodness, I have.
Most days I show up with the help of medications, rest and a lots of patience. If I have to leave the house, I need coffee, sugar and a choice between the fuzzy head, pink wig or Tina.
We all struggle to show up in one way or another. I would love to know, what does showing up mean for you?