Posts Tagged ‘attitude’
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 »
04.11.2011
Academic conferences are, among other things, a kind of reunion. My career has traversed a number of communities. Every place I have been, I have made friends and built relationships. We often keep distant tabs on each other, mainly through our work.
In between paper sessions and talks, the life of the conference takes place over meals, coffee, and receptions. That’s when you get to see your old friends and catch up. It was interesting to re-enter that world this past weekend after having gone through a great personal challenge.
I am not going to write about the few people who seemed to be avoiding me. I am going to give them the benefit of the doubt that they did not recognize me with my corkscrew curls, which only got screwier in the New Orleans humidity.
I was pleased with the grace that a number of my friends and colleagues showed me. I thought I’d catalog them here since I am often told by witnesses to the life tragedy of cancer, “I’m not sure what I should say.”
A grad school friend
We were walking together, and she stopped and turned to me. “Can I just say how sorry I am for everything you’ve been through? When I got your news, it hit me so hard. There are so many ways our lives are similar, and you are the first of my contemporaries to deal with this. I am so glad you are doing better.”
A former professor I knew mostly at a distance.
“I want you to know that I am so proud of you. I love your blog and have sent a number of friends there. What your doing is great.”
A former mentor
Meaningfully: “I am so glad to see you here.”
Friends I hardly ever see but I can really talk to
“We can talk about this if you want, but we don’t have to.”
(And they meant it 100%.)
Friends who faced their own challenges the past two years
“I am so sorry I couldn’t reach out. I was so swallowed up in my own life. But I thought about you all the time. And I’m so glad to see you.”
****
It’s normal to have long gaps between seeing colleagues. At one reception, someone I hadn’t seen in over five years came up to me, brightly saying, “Wow! Lani! I love your hair!” I just smiled and said thank you.
Then he looked at me intently and said, “So how’s it going? How have you been?”
I had to say that the true answer makes terrible cocktail party conversation, and then outlined briefly the chronology of events.
I felt like the wet blanket at the party.
Overall, it felt like another important transition back into my old life. I am glad to report that I was received with a warm welcome.
Tags: appearance, attitude, changes, coping, daily life, healthy people, identity loss, talking, what to say
Posted in Survivorship | 6 Comments »
03.21.2011
When I asked my oncologist how I could get on the good side of the recurrence statistics, here is what she told me:
“You will hear a lot of theories. But there are two things that we do know influence recurrence. You need to do aerobic exercise a half an hour a day and keep to your lowest healthy body weight.”
I have been a compliant patient all along. Being a compliant survivor is a little more challenging. Although they often seemed to stretch on forever, my treatments were time-limited. I could figure out ways to keep going back for the chemo that made me feel so sick or the radiation that turned my skin raw, in part because I knew it would end.
I have generally kept fit in my adult life, but like most working moms, there have been times of greater attention to self-care and times where that gets fairly neglected.
With my doctor’s words, I felt I could no longer weave in and out of an exercise regimen. It had to become like brushing and flossing, something that feels wrong to skip.
I know myself. I needed to structure this exercise task, give myself an exciting goal, cut the Rest-Of-My-Life time frame into a more conceivable chunk.
So I signed up for the New York City Half Marathon. I raised money for an organization I respect, the I’m Too Young for This Cancer Foundation. It felt like a deliberate push back to the disease that has robbed me of so much.
I got my training program lined up and wrote it in my calendar. It was non-negotiable. I had to figure out how to do my runs, whether there was rain, sleet, or a feverish child to tend to.
I got my Twitter pals involved. On days where I needed motivation (which was fairly often), I would dedicate my runs to specific friends who had shown me support or to groups of people I was thinking of. I dedicated long runs to the Newly Diagnosed, to Those Whose Suffering Cannot Be Touched by love or medicine.
These are some of my awesome cheerleaders on Twitter.
The dedications would elicit cheers from my tweeps. That helped me stay more focused and determined. I even got training tips from fellow runners.
I loved training because my increasing fitness was so concrete. Since I had my last procedure at the end of December, in early January, I was unable to complete a mile without stopping to walk. As I trained, I could run 1 mile. Then 2. Then 5. I even got some speed back. I noticed my sleep and concentration improving in other parts of my life. Running felt like a direct route to my recovery.
Yesterday was a lovely, chilly day in New York City. My childhood friend and I lined up at the starting corral and chatted for the better part of 13.1 miles. We went through Central Park, Times Square, and down along the Hudson River. New York City has been a backdrop for certain phases of my treatment. I came here for my second opinion when I was newly diagnosed. I came with my family to visit friends after my chemo was complete. And now here I was, with my re-emerging health, running through this iconic landscape. I felt strong the whole way and sprinted across the finish line.
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Thank you so much to all of you who supported me and helped me reach this milestone. I really feel like I am gaining an important part of my life back.
Tags: advocacy, attitude, coping, courage, exercise, gratitude, recovery, social media, survivorship
Posted in Survivorship, Wellness | 38 Comments »
02.20.2011
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 friend Anna, who blogs at The Cancer Culture Chronicles, has called our attention to the tremendous underfunding of research into treatments for metastatic disease. She’s done an analysis on how the Susan Komen organization, who has actually trademarked the phrase “for the cure,” spends a surprisingly small portion of their funds on research.
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.
Tags: attitude, changes, coping, courage, essay, identity loss, mental health, self-advocacy, straight talk, support
Posted in Survivorship | 26 Comments »
02.07.2011
This past Sunday, I met up with a local running club. About fifty or so runners congregated at the park entrance. It was a crisp, clear day. The coach called our attention and announced the morning’s runs.
I listened attentively as he spoke. I’m just getting my running legs back, but I’m pursuing them with a vengeance. I asked my oncologist what I could do to help ensure that I am not one of the 20% of women in my situation who end up with metastatic cancer. She told me that I will hear a lot of unfounded advice, but from her point of view, the only two things that would influence my prognosis are keeping myself to my lowest healthy weight and exercising regularly.
So I signed up for two half marathons. The first one will exactly 4 months after my last treatment, one year after my last Big Chemo. The other will be right after my 40th birthday in April.
The coach described three runs for the morning, and now I had to choose. I had a dilemma, though. To train for my half, I needed the longer distance of the intermediate group. Because I have just started to get my mojo back, the beginning group’s pace suited me better.
The choice may seem obvious to some of you. Of course, I hear you say, I needed to go the distance with the intermediate group and settle into the back of the pack.
But that’s a big adjustment for me. I’m not used to traveling at the back of the pack.
I went with the intermediate group and started out the 8 mile run at too quick of a clip, chatting alongside another runner. After a half a mile, I realized that I couldn’t hang in.
“Sorry, I’m going to have to drop back,” I said.
In my former life, my pride would have spurred me on to push myself to meet his pace. But my body is fragile as it recovers. It must take precedence over my ego.
As I ran along, letting more and more runners pass me by, I meditated on the metaphor of this situation. Others look at me and see somebody who is fit. I have the gear and the form of an experienced runner. I am relatively young. My hair is long enough and my complexion rosy, so I no longer look the part of the cancer patient. People expect me to be a different kind of runner.
However my pace belies these expectations. My body knows the difference. My lungs bear the scars of the radiation. My heart is recovering from the 18 doses of Herceptin which caused it temporary damage.
It doesn’t matter what they think, I tell myself. I know how to do this. I know how to get in the rhythm of my own breath. It’s a hilly course, and I know how to steady my own exertion so that I climb with constant effort.
The run brings my reality into sharp focus. I am constantly facing choices like this, managing people’s expectations of me and my own limitations. Right now, on this course and in my life, I can expend my energy on distance or pace but not both at once.
I run at the end of the pack, but I am not alone. There is a woman in front of me. From the look of her physique and form, she is a newer runner. She often slows to walk the hills. She hasn’t learned how to change her stride and pump her arms, to manage her energy on the climb. Every time she hears me approach, she picks up her pace again, determined not to be The Last One. Once I realize this, I feel somewhat annoyed. Today, I bear the stigma of The Last One. She doesn’t want to be me.
I have to fight my vain desire to pass her up just to make a point. I decide to treat this like yoga. I tell myself that I have to follow my breath and find my body’s edge. Stop comparing, I tell myself.
I am pleased with myself as I get into mile 7. The run has been good, and I’ve carried myself the whole way without walking. I feel strong enough to go for a few more miles if needed.
We approach another hill, and the woman slows so that now she is only a few yards ahead of me.
As the hill gets steeper, she stops to walk once again.
This time I pass her up.
I find a metaphor in this moment, too.
I may not be able to do speed and distance, but I have not lost the strategy for dealing with the hills. My illness may have set me back, but I still benefit from the wisdom of my experience.
Tags: appearance, attitude, body issues, changes, coping, courage, daily life, essay, healthy people, identity loss, survivorship, vanity
Posted in Survivorship | 13 Comments »
