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.
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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.
Even if you respond well to treatment, survivorship involves making space for the reality of cancer in your life. There may be stretches of time where you do not feel defined or limited by cancer, but it hangs over your head, like the legendary sword of Damocles.
Damocles was a courtier who voiced his envy of King Dionysus’ power and position. The king traded places with him so that Damocles could experience royal luxury, but he also hung a large sword over Damocles’ head, suspended by a single horsehair.
The original tale is meant to illustrate the burdens of leadership. Even though I carry a different burden, the image of the sword keeps coming to mind as I try to articulate the survivor experience.
For us, that sword is simply mortality. I have never been in denial of my mortality. When I have had hard decisions to make or am struggling with balance, I have often asked myself, “If I were to die tomorrow, what choice would I want to have made?” My days have always been numbered in my mind. The finality of life brings clarity.
The difference is between a theoretical experience of mortality and having sat in an exam room with doctors looking at the results of a battery of tests and seeing the serious expressions on their faces. It’s hearing them say that, if you don’t respond to treatment, your chances aren’t good. It’s having to entertain, from moment to moment for months on end, what it might mean if this really is it.
In other words, that sword hangs over all of our heads. The difference is that cancer survivors’ sights have been pointed upward. We have taken in the sharpness of the blade, the fragility of the thread.
Given the progress of science, many of us may have unknowingly escaped the snap of that hair. Maybe we were exposed to the polio virus but, because of vaccination, we are fine. Maybe a water filtration system kept a deadly bacteria out of our body. These lifesaving moments go unnoticed. They do not mark us in the same way the rigors of cancer treatment do. Nobody calls themselves a polio survivor just because they got a shot.
I am learning to live with this dread. And it’s not just because I walked so closely with death this past year. It’s because I know that 30% of women who successfully complete treatment for breast cancer will relapse and develop metastatic disease. I know that mortality rates have not improved much over the past 20 years. An optimist might look at those odds and say that there is a greater chance that you will not get metastatic disease. Most of the time I think that way.
For those of you who have not had cancer, it might even seem like unwarranted anxiety. But consider that approximately 40% of adults have some fear of flying. The odds of actually dying in a plane crash, by contrast, are 1 in 20,000, or 0.005%. Cancer survivors seem pretty rational in comparison.
The dread is there and rears its head sometimes. Yesterday, an article in the New York Times detailed the experiences of women with metastatic breast cancer. It was very sobering and shook me up. I tweeted about it and found that many other survivors –– some of whom have metastatic disease –– were also moved by it. We had a spontaneous twitter support group.
I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone.
As Anna explained:
Women with metastatic disease are sometimes shunned by other breast cancer patients because they represent our greatest fear. We treat them as if their condition is contagious.
Even without that rejection, the existential loneliness of survivorship is difficult all around. The people who love us most don’t always understand our angst.
I am learning from my friends, though. They help me see that the trick is not to live in denial. So I read the statistics that I quoted above. I know my odds. As Jody says,
Deb reassured us that life does not end the moment you learn you have “mets”. Yes, it is your worst fear realized, but you are still you. There is still love.
The conversation went deeper. It was as emotional and intimate as Twitter can get.
We were moved by the experience and still tweeting about it this morning:
Of course, since this was Twitter, some weird robots chimed in too:
I love my twitter friends. They give me strength, courage, and company. But the robot got this one wrong. I will do as Jody suggests and look cancer in the eye. I will come to terms with that dangling sword.
Last month, a work friend told me about a gossipy lunch conversation she took part in. Some colleagues were sizing up the real life skills of the research professors in our department, predicting which of us would survive hard time in prison.
Smiling, she told me, “We decided you would make it. You have the skills.”
She knew it was an odd compliment, and we had a good laugh about it. Of course, I hope we never find out if they put their money on the right horse in that race.
I know that her praise was, in part, a nod to coping skills I trucked out this past year. Cancer treatment is definitely hard time.
I suffered a lot. I hated it. But I was a pretty kickass cancer patient. I knew how to stay on top of stuff, chase down information, use my resources, and persevere.
And of course I got by with more than a little help from all of you. So thanks for that.
But now I am entering new waters.
HMS Survivor
Although diagnosis is a process, there is usually a clear moment when you hear the words, “You have cancer.” There is a distinct Before and After that you can turn over in your mind, the moment where everything changes. You slip into an alternate reality and must make your way through.
Survivorship does not have such a clear beginning. There are those who believe you are a survivor from the moment you are diagnosed.
For me, survivorship came in phases. I first felt like a survivor when the Big Treatment (chemo, surgery, radiation) was over and I had the first strange sealegged experience. Then, with my last infusion in November, I was no longer doing anything medical to fight any lingering cancer cells that may not have read my very passionate eviction notice. Finally, two weeks ago, I had a medical apparatus — my port — removed from my body.
Cancer survivors often flash each other their port scars. It’s our version of a secret handshake.
I have a scar now where the port used to be. The Survivor Ship has set sail.
So now what?
I am still tired. My body is different. I have signs of PTSD. Havoc has been wrecked in many parts of my life.
Now that the hard time is over, am I supposed to pick up where I left off?
It’s not possible. Too much has changed since I first heard those words, “You have cancer.”
So today, I went to my cancer center’s survivorship clinic. I spent half an hour this past weekend filling out a few surveys designed to assess psychological, social, and medical issues.
I met with a social worker and a nurse for a total of three hours, which is a luxurious eternity in the medical world. Both were wonderful. They educated me in a way that attended to my particular situation. It has already helped alleviate my anxiety. The nurse produced this beautiful two-page summary of my diagnosis and treatment that I will have to give to all my future doctors. She discussed all the possible late effects of my treatment and how I should plan to monitor and manage them. And she said the priceless words, “You are healing very well.”
The social worker is the first counselor-type person I’ve met with since my diagnosis who I could talk to honestly. I saw two other therapists during my treatment, but neither had an oncology specialty. I felt like I was having to educate them too much, so I quit counseling as an energy preservation measure.
This social worker, it turns out, is herself is a survivor.
I spoke with her at length. My takeaway was this. During treatment, survival took one set of coping skills that could be best described as rallying: my friends, myself, my family. Treatment is about continually picking yourself up and moving forward.
After treatment, survival looks different. From what I gather, it’s more about waiting and acceptance, letting things heal, letting time pass, and allowing your new self to unfold.
I am a problem solver. I am happiest with something to do. I imagine that it’s my capacity to rally that led my colleagues to imagine me as a successful hard time prisoner.
Like my cancer treatment, most jail sentences have a beginning and an end.
Being a survivor, however, is a life sentence.
It seems like there’s a lot of waiting. Waiting, waiting, waiting…
I don’t know how I’ll cultivate the coping skills for that.
