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.
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.. ♪.”
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.
The most poignant notes I get about my blog are from women undergoing treatment who feel alone. They may be surrounded by family and caring friends, but they live in the alternative universe that is CancerLand. When they resonate with something I’ve written, they describe it as a “relief.”
Lately I’ve been thinking about who I am now that I am on the other side of the Big Treatment. It would be easy for me to embrace the role of the Triumphant Survivor who kicked cancer to the curb, now runs long distances, and by year’s end should have a gravity-defying tatas. It’s tempting to take credit for having won my “battle,” to take this feat as a confirmation of my strength of character, and face the world with a renewed sense of purpose.
It’s tempting.
But I can’t.
It’s not because I am so modest. Cancer is a trial that tests one’s character, and I believe I met the challenge fairly well.
I can’t because I know that my character is not why I have survived. As my regular readers know, I lost my stepbrother to cancer less than two years before I was diagnosed. I am aware of the courage, love, and humor he showed during his treatment. In fact, there were times during my treatment that I compared myself to him and keenly felt the ways that I fell short of his example.
And, for me, the linking of character to triumph is where the stories we tell about survivorship unravel.
Despite the superhero persona I created for my blog, I didn’t actually fight cancer. The truth is, I got treated. I was fortunate enough to have found my tumor before it was Stage IV –– and even then, just barely. A targeted treatment existed that hadn’t existed only a decade earlier, giving me a somewhat hopeful prognosis. I was lucky that the specific pathology of my tumor responded to the treatment, which is not always the case. I am grateful that even when my oncologist had to reduce my chemo doses because of all of the horrible side effects I experienced, I still came out with a good pathology report at the end of my treatment.
I can’t link my “good outcome” to any attribute of my self because I bear the legacy of my brother. His story shapes my own. He got treated too. In fact, he spent the last 20 months of his life in treatment. But he drew the short straw in this cancer game. His cancer was rare, and it was found after it was metastatic.
The dark and gray spots were the tumors on his bones.
It actually would be foolish of me to link my triumph to my character, because I know that I am not out of the woods. I said a few paragraphs back that I have survived. The truth is that I have survived so far. When I asked my doctor if I am cancer-free, she told me that she can’t say that until October 2012, three years after my date of diagnosis. Right now I have a 20% chance of having a recurrence, at which point, I too would have metastatic disease. If I embrace the idea that I have survived so far because of my outstanding character, where will that leave me if it comes back?
The Triumphant Survivor story is harder to embrace if we acknowledge it’s conditional on a yet-to-be-determined outcome. Nonetheless, its very pervasiveness makes it hard to acknowledge that reality. I realized that back when I started this blog, when I was first diagnosed.
But the story persists, relentlessly. It’s seductive in part because it puts us at the locus of control in an out-of-control situation.
Here’s another example. Check out this brochure from my local Boobless Lady Supply Shop.
Do you see their slogan? It says “From diagnosis to remission.”
In other words, if you have metastatic disease, this is not the place for you. In fact, I’m not sure where you are supposed to go.
I have no false hope that my good attitude will keep me on the right side of that 20% statistic my oncologist gave me. And ultimately, we need to all do a better job understanding that metastatic disease is a possibility for all of us.
Diagnosis to remission is not the only, inevitable trajectory.
Diagnosis to remission is not “earned” by those with a good attitude.
Women suffer because of these beliefs. Women who experience post-treatment depression have their pain compounded by messages that they are surviving incorrectly. The women who write me to tell me of the relief that they feel reading my blog are glad to not feel blamed for doing cancer “the wrong way.”
Dare I say, women die because of these beliefs. We edit out the reality of metastatic disease because it doesn’t fit this story. It is viewed as hopeless. Then, perhaps as a consequence, we don’t allocate research funds to it. But we must deal with it. One out of five of the women in my situation will end up there.
My call is for truth in talking about treatment and survivorship. Treatment sometimes works and sometimes doesn’t. While attitude may influence compliance, it does not otherwise influence outcome. The right treatment for the disease is what counts.
Staying positive may have a place for some women, and I can respect that as a coping strategy. I use it myself much of the time. (Check out some of the comments on my last post for some examples of women who dealt that way.) I think it’s disappointing to come to terms with the fact that positivity is not going to determine the outcome.
So what’s the goal? Where’s the map? How can we understand survivorship?
I can’t speak for everybody. I can only speak for myself. I will tell you that the women I admire most are the ones who flourish not because of their good attitude, but because of their unflinching honesty.
