Posts Tagged ‘daily life’
08.21.2011
My son is four. He is at an inquisitive age.
“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.
Tags: coping, courage, daily life, essay, grief, hope, identity loss, parenting
Posted in Survivorship | 26 Comments »
08.14.2011
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.
Tags: advocacy, chemobrain, coping, courage, daily life, doctor-patient interaction, essay, hope, identity loss, parenting, support, survivorship
Posted in Survivorship | 10 Comments »
06.24.2011
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.
Tags: attitude, changes, coping, daily life, essay, gratitude, mental health, parenting, support, survivorship
Posted in Survivorship, Treatment, Wellness | 16 Comments »
05.28.2011
While I have had fun making fun of all the pink crap that purports to support breast cancer patients, I have avoided direct criticism of the Susan Komen Foundation. Until now.
It’s not just because they are one of the top two most trusted nonprofit brands and I want to stay in my readers’ good graces. I respect you too much to pander like that.
I have hesitated because of people like this:
I don’t know these women. I got their picture off Flickr.
They are completely fabulous though.
I know women who have felt transformed by the Three Day Walks, Komen’s signature event. I cannot overstate their symbolic power. They provide community. They make a natural place for a comeback from treatment or even grief. They are a way of giving cancer the middle finger. The feeling of unity and purpose at these events humbles me.
How can you criticize an organization that makes these experiences possible?
Friends, I have to speak up. While the unity may be 100% real, the purpose has become distorted. I feel that these women and the people who donate to them are being misled. I do not like to see people’s good intentions exploited.
I realize I’m a little late to the Komen critique party. Heck, there’s an entire blog dedicated to Komen oversight. Others have already pointed out how little of Komen’s money goes to research. More egregiously, they have trademarked the phrase For the Cure® and they sue smaller organizations for using it.
“For the Cure” trademarked? Maybe we’d cut them slack if they truly were about curing breast cancer. Instead, we learn that only 2% of their funding focuses on metastatic disease.
Let’s face it. If you don’t deal with metastatic disease, you are not focusing on The Cure. Since 20% of all survivors will get metastatic disease, regardless of stage at diagnosis, there is a 1 in 5 chance that this will become our problem, if it isn’t already. We need cures. Real ones, not just the kind you find on key chains.
The trademarking should have tipped us off. Trademarking is not about science. It’s about profit.
Komen has become a brand to such an extent that the reality of breast cancer has been lost.
A friend recently told me that Komen founder Nancy Brinker would be appearing on HSN. I assumed that meant Health Science Network.
Can you tell I am not a regular patron of the Home Shopping Network?
What was the straw that broke my back?
It’s Nancy’s latest product, Promise Me™ perfume.
My outrage is simple and comes in three parts: linking cancer to a perfume, the weird beauty breast cancer connection, and the misleading use of the money.
1. Many people in chemo, myself included, become incredibly chemically sensitive. I almost passed out when a woman at my gym sprayed perfume in the locker room. I was shaking and it took a half an hour for the episode to pass. The last thing I wanted to be near or around was any kind of fragrance. There is even evidence that fragrance may be carcinogenic – For the Cure® indeed!
2. Why do we have beauty products to raise funds and awareness for breast cancer alone? It is the only form of cancer that demands that we stay beautiful, even as we puke our guts out and lose our hair. Komen perpetuates this ideal.
I call shaved head. Or photoshop. She still has eyebrows.
Couldn’t they have photoshopped her eyebrows?
Breast cancer is the Beautiful Cancer. Can you imagine a brain cancer perfume? How about anal cancer? Why is there not the same dissonance with breast cancer? It’s all cancer, for crying out loud!
3. This “floriental” scented perfume costs $59.00. Of that, how much do you think goes to research? If you said $1.51, you are correct! (Thanks for the math, Uneasy Pink!)
Since Komen spends a minuscule fraction of that on researching metastatic disease, very little of your fifty-nine bucks is going toward a cure.
Hell hath no fury like a nauseous me involuntarily squirted with perfume, Komen. It’s on now.
To the fantastic walkers, I still love you. May I direct you to Susan Love’s Foundation’s Avon Walk? She is a breast oncologist focused on research.
(Yeah, I know. Avon. Beauty. But I still say it’s better…)
In the meantime, my fabulous online family has been coming up with better names for this perfume.
Who says breast cancer patients have no sense of humor?
Tags: advocacy, chemo, coping, courage, daily life, essay, komen, nausea
Posted in Survivorship | 115 Comments »
05.13.2011
Yesterday, I ran on a shady paved trail through the park. The 5.8 mile path is a refuge in the heat, which was climbing toward 90˚.
I like running the same route week after week. Partly, I am a creature of habit. Also, running the same trail allows me to monitor my progress. I check in with my body. How fatigued am I? What pace can I go? How do I contend with this hill? How strong do I feel when I’m finished? I note all of these things and feel the runs getting easier, which is good for my confidence.
At the top of a big hill near the halfway point, I felt the fatigue setting in. The heat was draining me and I was sweating profusely.
Running helps me practice patience and compassion with myself, so I don’t tell myself to push on much of the time. I stopped to walk for a couple of minutes. After catching my breath, I felt much stronger and continued on my way.
It was time for a big descent. In the recent past, I have kept my pace steady, even on downhills. I don’t know what has been holding me back –– a fear of the speed, a fear of falling. I just haven’t been up to it.
With my renewed energy, I decided to let myself fly. It was a joy. I also felt hopeful that I might pick up some of the time I lost walking and make a good overall pace for this run.
As I rounded the curve, I saw a woman climbing over a wall separating my path with one of the many unpaved trails in the park.
She looked lost. She was about my age, dressed in running garb.
Pace be damned, I thought, letting go of the time I was making up. I stopped to see if she was okay.
She asked me how to find a certain trail. I told her that I am only familiar with the paved routes.
“We are about one mile from the exit,” I said. “If you want to run with me the rest of the way, I can drive you to your car.”
“Okay,” she smiled. “I think I’ll take you up on it. I’ve been running for about an hour and a half. I promise I don’t have a knife stashed anywhere.”
She continued with me on my flight down the hill. I took one of my earbuds out so I could converse.
“Are you training for anything?” I asked.
“No, I just like to run a lot,” she told me. “Are you?”
“I finished cancer treatment at the end of last year, so I’ve been doing half marathons like mad.”
She was unfazed.
“That’s great. What kind of cancer did you have?”
I told her.
“I had Hodgkins when I was pregnant with my fourth child. She’s 12 now.”
“I knew you were a cancer survivor! You didn’t blink when I told you. Usually people get really quiet and awkward.”
We ran the rest of the way down the hill, chatting about treatment, side-effects, fatigue, and children. I took her to her car, as I promised. She did not have a hidden knife, as she promised.
I realized, once again, what a unique bond survivors share. It’s as if we can enter the middle of a conversation and not have to provide all the explanation that other people require to make sense of our experience.
This is why our online community is so powerful. We are what my fellow blogger Feisty Blue Gecko aptly calls stranger-friends. We often understand each other in ways that our closest intimates cannot.
I hope to cross paths with my new stranger-friend some time soon.
Tags: coping, daily life, fatigue, hope, running, support
Posted in Survivorship | 19 Comments »
