About two or three weeks before my diagnosis, we had a lice outbreak at my house. As a working mom, I was overwhelmed by the work of nitpicking three heads of thick hair, the vacuuming, and the laundry. I estimated it took about 20 hours of work to rid ourselves of that plague.
I felt so put out. I griped on Facebook and elicited much assistance and sympathy.
This is not my child. Not thick enough hair to be mine.
Plus she’s smiling while getting treated. My kids like to complain and say “Ow!”
When I got my diagnosis a few weeks later, my status update read:
Dear God, I’m sorry for complaining about the lice.
Fast forward 2 years later to this past week. My husband goes away on his first weeklong business trip since my illness, leaving me alone with the kids. He is worried –– we had assumed that my post-op pain would be resolved by now, and I am still fairly limited. I am worried –– several work deadlines have piled up for the week that he’s away.
He leaves Tuesday evening. I get the kids to school Wednesday morning and go exercise. As I am leaving the gym, I get a phone call from my kids’ school.
“Your daughter has lice. Please come get her.”
When I arrive at the school, my other daughter has them as well. We then check my little boy, and sure enough, he has them too.
I dash off a few emails to the people I was to meet with that day, canceling some, re-arranging others.
The kids and I stop off at the grocery store to pick up nitpicking supplies and stay-at-home activities such as cookie ingredients, mani-pedi supplies, and coloring books.
“Just think of this as our lice-cation,” I tell them.
I sit in the bathroom, skyping into meetings, picking my way through their piles of thick brown of hair while discussing readings with my students and projects with my colleagues.
The next day, I take them to a professional lice picking place. The girls’ hair takes over 3 hours apiece with the pros. I pay a ridiculous sum that I am going to try to get reimbursed by insurance. None of this daunts me. The kids go to school the next day, and my week has been seriously disrupted.
I don’t like to give cancer any credit for anything good. It is not a gift, and if it were eradicated tomorrow, the world would only be better off.
But there is no doubt that my trials over the past year have put minor plagues like this in perspective.
Lice are inconvenient, but you can bake cookies and watch movies while you deal with them. And nobody is going to die.
Nothing like getting plagued twice to recognize how much you have changed. Time off without fear of death can be a kind of vacation. I can ask for help and deal with the consequences later. I do not have to power through everything alone.
I have always had a healthy carpe diem streak in me. I like to let loose and have fun.
Less than two months before my diagnosis, I had a conference in Amsterdam. In addition to attending scholarly talks and meeting with colleagues, I enjoyed the city with friends.
The boat ride pictured below was particularly memorable. Cruising through the canals with a bottle of wine is so lovely.
.
I had cancer in this picture. I had no idea.
I am gearing up for surgery on Thursday. I am, in the words of my middle child, getting ready to be pulled under by the cancer sea once again.
Only this time, I have had some warning. I have some of my health and fitness back again. Instead of the shock of diagnosis with the uncertainty of the treatment, I know I’m going in for some pain, but I will get something on the other end.
I’ve managed the prospect of more suffering by trying to use a principle of opposites: I’m filling up on Happy.
In fact, I’ve been on a bit of a carpe diem bender.
My family & I took off for a long weekend at the beach.
A week later, I had a work trip to Rome. Once again, in between official duties, I found opportunities to have some fun.
Can you see the Coliseum in the background?
I ate yummy food and saw beautiful art.
That granita was amazing.
Then, as if that weren’t enough, I went back to Holland to give a talk at a university.
Of course, I managed to fit in some fun.
Look! I’m back in the same boat!
As a final hurrah this past weekend, the girls and I went to a Taylor Swift concert. She is their musical idol.
Watching my daughters grinning from ear to ear, singing every word as they watched her show, filled my mother’s heart with loving joy.
Could it get any better?
Actually, yes.
Two seats away from my eldest sat Martina McBride. She is a hero for many of us cancer survivors.
She wrote an amazing song called “I’m gonna love you through it” that seriously could be written for me.
I went up to her and let her know how much her song meant to me. She was incredibly gracious.
Meeting Martina reminded me that I can get loved through this part, too.
When my body is hurting in the coming weeks, I will be able to close my eyes and bring up lots of great moments.
Trust me. I’m having fun, but I will never, ever say that cancer is a gift.
Life, on the other hand, with all it has to offer, most certainly is.
———–
If you haven’t seen Martina McBride’s video, get out your hanky and watch it now:
“♪ Cancer don’t discriminate or care that you’re just 38 with three kids who need you in their lives.. ♪.”
“Mom, which of these drawings do you like the best?”
“Oh, I don’t know. I guess the middle one.”
“Why?”
This is the way our conversations go these days.
He is a curious person and is trying to make sense of the world. Even when the world doesn’t always make sense.
“We eat some fish because they are mean. Other fish are nice so we keep them as pets.”
“Um, well… Not exactly.”
The other night, I was putting him to bed. We were doing that parent-child thing of trying to express the enormity of our love for each other.
“I love you to the moon and back again,” I said.
“I love you to infinity and beyond,” he said.
“I love you longer than forever,” I said.
He became thoughtful.
“Mommy, you can’t love me after you die.”
I smiled, pleased to have an opportunity to teach him something about the nature of love.
“That’s the amazing thing about love. My love for you is so strong it will live longer than me. You will feel it inside of you for the rest of your life, even if I’m not here.”
He grew earnest.
“But your heart will stop beating when you die. You can’t have love without a heart.”
“Love doesn’t just live in my heart. My love for you will continue on in your heart.”
Then he burst into tears and threw his arms around my neck.
“Mommy, I don’t want to be the little boy whose mommy died.”
I embraced him, stunned into silence. I looked for words of comfort.
Cancer has stolen the easy assurances I gave my girls when they were his age and coming to terms with death.
My children have no illusions about the mortal dangers of cancer after losing their uncle to it two years before my own diagnosis. Parental death is also within reach of their imagination. They know their own father was only three when he lost his father to a different disease.
Death, once they can envision it, is not just something other people have to deal with. Consolation becomes harder to summon.
But I did.
“You know how I exercise to make my body strong?”
“You run a lot,” he said enthusiastically.
“Yes. I do that because it makes my body strong so I can be here for you. I do everything I can to keep that cancer away. Do you remember how sick the chemo made me?”
“Yes,” he said.
“Do you know when I felt tired of taking that yukky medicine, do you know what I would think about? I would think about how I need to be here to help you grow up. I would think about how much I want to see you become a young man. And how much I want to see your sisters become young women. And then I would take the medicine again.”
I paused and then asked a question he has heard a hundred times.
“What’s my most important job?”
“Taking care of me and my sisters.”
“YES! I will do anything to do that job and to keep doing that job. You are my most important job ever. I love you THAT much.”
He took in my words and we had a long snuggle as he drifted off to sleep.
Later that night, a heard a small fist knocking on my bedroom door.
It was my son, once again in tears.
“Mommy, I’m scared of the dark.”
I let him in my bed and calmed him down. We held each other and fell asleep.
Because sometimes, that’s the only solace you can give.
Twenty five years ago, I began a friendship that broadened my world. A French exchange student stayed with us in our home. I enjoyed showing her my 15 year old’s version of America for the summer. Soon afterward, I got to take a tour of her 18 year old’s version of France.
I spent two summers abroad with her family. My French became strong enough for me to enter the advanced French literature seminar in college.
But I haven’t been to France in over two decades.
J’ai beaucoup perdu.
This past weekend, a little bit of France came to me. I had another lovely visit with my French friend (that’s how she signed her letters back in the day and continues to sign her emails now).
Only this time, she brought her family.
I didn’t know what it would be like to try to summon up all that dormant vocabulary and grammar, especially after the number chemo did to my brain.
I’ll be honest, it felt a bit rough at first. Lots of misconjugated verbs and comment dit-on‘s.
My friend and I can weave in and out of all sort of versions of Franglais, but her two girls and husband counted on me for some French conversation. Not to mention my own family. My husband speaks fairly functional French but the kids needed to be let in on the action. I found myself playing the role of translator quite a bit.
But then, I crossed over to actually producing thoughts in French, to hearing myself what the song and rhythm of the language should be without having to overthink each utterance. Every time a synapse connected and a word came back –– pop!–– I wanted to do a fist pump.
Becoming plural — having a we to talk about –– was not the only significant change to my language in the past 20 years. As teenagers we spoke in singular tenses — je et tu — but now we are very, very plural.
In part, the gaps in my vocabulary reflected the changes in the world –– I needed words for “email,” “going online,” “googling.”
But the missing words also reflected changes in my own life. I need much more medical vocabulary now that I am a 40 year old cancer survivor than I did as a 20 year old college student with a Eurail pass and a backpack.
I have picked up some of the vocabulary from reading the blog Maison du Cancer and by tweeting with the amazing French survivors that we often refer to as les Cathies, Catherine Cerisey and Catherine Malhouitre. So I knew radiothérapie, chimiothérapie. But I needed some help describing consultations with le chirurgien. That word is a mouthful.
All of these words rushing forward, all of these blanks to fill in: it made me remember, once again, how deeply our language is connected to who we are.
Why, for example, is there no good French translation for “silly” but English is so impoverished when it comes to food that we need to borrow French words like gourmet and the even better gourmand?
There are whole swaths of experience that can be kept at bay when we have no words to describe them.
Which is, in part, why I blog. We share our stories and put words to the otherwise indescribable experiences cancer brings to us.
When we tell our stories, they are no longer invisible. We learn from each other and invent the words and images we need to feel seen.
Our stories become a part of a collective strength, and then we are no longer alone.
During treatment, we are thrust into an uninvited, relentless Present Tense. We put aside our plans and obligations and focus on our health. We take leaves from jobs, renegotiate our commitments, garner support from people who care about us.
The future becomes necessarily more tentative. You may not be there to meet it. Or maybe you will, but who knows in what condition. How will I feel next week? Tomorrow? An hour from now?
When you are healthy, it is easy to plan your life with some confidence. When you are ill, there is hesitation, particularly if you are used to being dependable.
Time changes shape. Horizons shorten. The Present Tense of crisis is fueled by adrenaline, colored by anxiety. There is so much to worry about. Health. Money. Health. The inevitable dramas with family and friends.
Health.
As if cancer was not enough strain, imagine throwing young children into that mix. Their needs are perpetual. They are, by design, dependent. This is their childhood.
Despite the insistent, unwelcomed Present, a mother makes an effort to create a semblance of normalcy and joy.
But the strain is always there. A child, naturally, wonders about the future. “When I get bigger…”A mother pulls back, reluctant to imagine a time that she may be robbed of sharing.
My family has been in this state of crisis. Like a person huddles over an injury to protect it from the world, we have been doubled over in the wake of my cancer. We have been wounded. The primary injury has been tended to, but the peripheral problems have only been uncovered, including this unrelenting sense of crisis.
In addition to the physical devastation of treatment, patients and their families must also contend with a new financial reality. On average, American cancer survivors pay $5,000 more a year in medical expenses than people who have not had cancer. That takes a lot of options off the table for the typical middle class family. Vacations go. Summer camp, music lessons –– winnowed down. That certainly has been our experience.
Last week, we got a reprieve. We participated in a beach retreat with a new non-profit called Little Pink Houses of Hope (LPHOH). Founder Jeanine Patten-Coble, herself a breast cancer survivor, recognized that women are not the only ones impacted by breast cancer. An entire family is affected.
LPHOH gave my family use of a beach house, donated by a couple in Kill Devil Hills, North Carolina. LPHOH hosted several families last week. All of us arrived at these homes, stocked with groceries, armed with gift certificates to local merchants and restaurants. Jeanine told us that her goal was to keep our wallets closed for the whole week. Just hearing those words brought our stress down a few notches.
Jeanine and the other “volunstars” provided us with a schedule of optional activities, from kayaking to jewelery making, all designed to give families quality time together. They wanted us to feel comfortable and cared for. Our challenge was to open ourselves up to receive.
It took us a few days before we realized just how tightly wound we were. You don’t realize you are hunched over until somebody lays a hand on you and reminds you how it feels to stand up straight. Midweek, the tight knot we were started to loosen a bit. We breathed more deeply. We smiled more easily.
We shifted into the pleasant Present Tense of a lovely vacation. The no-watches-needed Present Tense of an afternoon by the ocean . The wake-up-and-see kind, as you lazily peek back at the sun through the curtains and anticipate another adventure.
I was able to go on a Ferris wheel at a fair with my children, teaching them how to be brave.
I played in the waves with my son, sharing the awesomeness of the ocean.
I collected seashells with my girls, seeing beauty around us.
My husband sang as he kayaked down a river, while his punctured boat slowly sank, requiring the occasional bail out. A perfect metaphor for life with cancer, to be sure.
As we left the cocoon of the retreat, we came back restored, finding more joy in each other and our lives, together. Our time seems lighter, even in the ordinariness of our daily lives.
Along with seashells and sandy shoes, we have brought home a bit of the pleasant Present.
