Posts Tagged ‘daily life’
01.16.2012
Maintaining a sense of ourselves is one of the great unanticipated challenges of cancer treatment. When you have a brief illness or accident that lays you up for even a few weeks, it pales in comparison to the months or years of treatments we endure as cancer patients. Our bodies and capacities are compromised –– sometimes permanently altered. Friends and family disappoint or leave us. Our work goes undone.
Our changing selves may be less recognizable to those around us. Our appearance is altered, our habits changed. But staying recognizable to ourselves — that is what keeps the cancer from metastasizing to our identities.
Up until now, I have been so immersed in my own struggle, I haven’t had much room to take in other people’s stories beyond the blog posts I read. My friend Sarah sent me the book she wrote about her breast cancer and treatment, and I have finally had the capacity to take it in.
Sarah’s book is about many things, but in large part, it is about maintaining an identity across the years and trials of being a cancer patient.
Sarah is an artist, a gardener, a runner, a maker of beautiful things. Her book gives an account of her journey from diagnosis, treatment, and beyond that is unusually vivid and highly personal. It is an emotional story, told by somebody with a keen sensitivity to her own experiences and feelings.
As with so many of us, Sarah’s cancer upends her life. She immediately feels the intrusion on her identity:
My life is full-time breast cancer now. There is no space for anything else. Researching treatments, mainly, and thinking a lot. [...] Where did my life go? I feel down. How can I recover a sense of me, a sense of pleasure and things that aren’t cancer related?
As she adjusts to this new self, she articulates the discomfort so many of us feel:
It’s summer now and everywhere I look I see women with two breasts and I find it so depressing. I am only four months since diagnosis and have been through so much already. [...]
I have cried in joy at the pleasure of being alive. I have cried in pain over the loss of my breast. I have cried deep into the night, I have lain awake worrying about death, my death. I have felt isolated and alone, I have wept in hospital waiting rooms, I have nervously examined my own blood as it goes off to be tested, wondering if I could see anything wrong with it, how my own body has let me down like this.
The life of a patient leaves her feeling lost, like she is becoming somebody unrecognizable:
Spending the day in pyjamas. I didn’t even possess pyjamas before breast cancer. Why would I? I would never laze around for days on end. Ever. Am I turning into a slob?
Like so many of us, she notices others’ awkwardness in interacting with her:
I look so well, it seems to confuse people. I’ve been ignored by people, who walked straight past hoping I wouldn’t notice; and then there are those who pat my shoulder and look at me with a sort of pity that seems to imply that I might die soon. Is that what they think?
Even medical people struggle to bridge the divide between the healthy and the ill. In one episode, Sarah tries to be understanding of a consulting surgeon. He, like many of his colleagues, has no idea what she is experiencing.
I try to be nice to him, but I’m not getting through here. No, I think he has absolutely no idea what it feels like to get a cancer diagnosis, to lose a breast, to face treatment decisions that are weighted with life and death statistics, and the emotional impact of all that. To have this chemical and surgical menopauase. Just what it feels like, I can tell he has no idea.
The power of Sarah’s story is how she never stops being Sarah. She remains inquisitive, reflective, passionate, sensitive, taking classes in botany, sewing her own new beautiful bras, knitting, camping on the coast with her beloved Ronnie.
There is no time left for artifice, for superficial niceness, for anything that does not fill my heart with complete joy.
At the book’s end, Sarah makes it through her treatment. Even then, she frames her experience in her own terms, giving it her own meaning. She rejects the term survivor. As she says:
I don’t feel like a ‘survivor’, I don’t feel I want to be in a ‘special’ club, I don’t feel that I am in any way special because of the disease I happened to have had.
As I read Being Sarah, I found myself this book to be mandatory for all who work on oncology wards. We are lucky when we have medical people who are empathetic to our experiences, but in my own estimation, it is beyond the grasp of too many of the doctors and nurses we encounter.
I am not alone in my assessment of the value of this memoir. Sarah’s book won a commendation by the British Medical Association Medical Book Awards.
Sarah describes the emotional life of a cancer patient beautifully. I kept having those moments of recognition, of having my own experiences reflected back in a new light. Even where my experiences diverged from hers, I found her honesty gripping and raw. Like the rough coastlines and beautiful gardens that bring Sarah delight, her story has a wild, natural beauty that reminds us of the unexpected tenacity of life.
To purchase Sarah’s book, go here.
Tags: body issues, book review, changes, coping, courage, daily life, doctor-patient interaction, essay, support, survivorship
Posted in Survivorship | 6 Comments »
12.05.2011
I haven’t been blogging as much lately. On my facebook page and on twitter, I have continued my work as a curator of cancer stories, focusing on social and emotional issues in particular. My own cancer treatment has happily taken a backseat to my very full life, but I enjoy monitoring the internet for information and insights, and keeping up with the wonderful people I have met via social media.
These relationships are rewarding. They help me harvest the wisdom of my experience and share it with those who are earlier on. They allow me to learn from others whose experiences differ from my own, putting my own in perspective and helping me better understand.
But mostly, we lend each other support. We celebrate good news and send comfort with the bad. It takes time, yes. But it is time well spent.
Why do we, who are finished with the Big Treatment, want –– or even need –– to take time to pause and notice? What does it mean to let in the sad, happy, beautiful, heartbreaking, and absurd parts of of our friends’ situations? Why not just move on?
I read this poem last night and found it helpful in explaining.
Invitation
by Mary Oliver
Oh do you have time
to linger
for just a little while
out of your busy
and very important day
for the goldfinches
that have gathered
in a field of thistles
for a musical battle,
to see who can sing
the highest note,
or the lowest,
or the most expressive of mirth,
or the most tender?
their strong, blunt beaks
drink the air
as they strive
melodiously
not for your sake
and not for mine
and not for the sake of winning
but for sheet delight and gratitude ––
believe us, they say,
it is a serious thing
just to be alive
on this fresh morning
in this broken world.
I beg of you,
do not walk by
without pausing
to attend to this
rather ridiculous performance.
It could mean something.
It would mean everything.
It could be what Rilke meant, when he wrote:
You must change your life.
Tags: coping, courage, daily life, gratitude, mental health, poetry, social media, support
Posted in Survivorship | 20 Comments »
11.20.2011
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.
Tags: attitude, coping, daily life, gratitude, mental health, parenting
Posted in Survivorship | 3 Comments »
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 | 25 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 »
