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.
Am I allowed to ban five words from my doctors’ vocabulary? Or at least require a 10 second waiting period before they are permitted to utter them?
A couple of weeks ago, I met with my surgeon about having my port out. Just to be clear, I love my surgeon. I think he’s great. I chose him over another surgeon in part because he is a very level-headed person in addition to being a skilled and experienced doctor. He’s a good guy too. He agreed to give me my port to put on the dash of Joe Bacal’s race car and even had a belly laugh in response to my request.
So when we discussed my port removal and he told me, “It’s not a big deal,” I wanted to believe him. Upon further questioning, I recognized that there is a schism between his ideas about “big deals” and mine.
I should know enough by now to be wary of those words. I was told by my oncologist that my Herceptin infusions were not a big deal. And, certainly, compared to chemo, they were a cakewalk. Hell, they were practically a party. Even so, I would get a 24 hour Herceptin flu after each infusion where my stomach was off and I felt tired and lousy. In fact, when I got a real flu this fall, it seemed mild compared to my Herceptin flu.
I got an echocardiogram in the middle of my radiation. Not a big deal, right?
Well, it shouldn’t have been. But the tech put one of those little sticky electrode thingies on my radiated skin. When he removed it, he took a fair chunk of my skin with him, giving me a nasty blister that was so painful I had to take opioids to control the pain and, ultimately, end radiation early because of the damage.
The point is that medical treatment can be a big deal for a whole host of reasons that may not be apparent to doctors. Our bodies may be more sensitive. We may come with other injuries that make us more vulnerable. We have a different frame of reference for what is and is not a big deal.
When my surgeon says, “It’s not a big deal,” he means, “It’s not a big deal compared to organ transplants or open heart surgery.” He might even mean it’s not a big deal compared to double mastectomies. And he’s right.
But here’s the thing.
It is a big deal. I’m just starting to get my fitness back, and now I have to take a couple of weeks off. I will not be traveling for the holidays because I’ll be on pain meds again. I’ll have to stay home from work, which I’m just starting to get back to speed on. Anything that sets me back at all feels like a big deal.
Not to mention my PTSD. It’s hard to remain calm and collected when the last time you went into surgery, you emerged missing two body parts.
Then, when he tells me I can’t pick up my three year old for four weeks, it becomes a very big deal. For my whole family. I can’t be left alone with a preschooler who might impulsively start walking backwards toward the edge of a staircase. It means I can’t respond to his daily request of, “Mommy, hold me!” It means my husband is once again in the position of having to be the primary parent in charge.
By telling me that it was not a big deal, I did not fully anticipate the situation that my surgery would put me and my family in. It fed into my own denial, my desire to look forward and not back. Now, I have been scrambling to get playdates for my kids and asking friends to help out.
This is the port. The little drum is where they infused me, and the white line led into my vena cava.
I hope I don’t seem ungrateful. I realize that it’s a good sign about my doctors’ assessment of my treatment that they felt comfortable taking out the port. I’m glad to have one less medical mark on my body.
I’m glad to have the port out and look forward to seeing it on the dash of Joe’s Lexus.
At the Life Beyond Cancer retreat, I got a peek at what cancer and survivorship were like before the age of activism, blogs, and social networking. Kathy LaTour, editor of CURE magazine, had us roaring with her tales of treatment in the pre-pink ribbon era, before the rough edges of chemotherapy were softened by modern anti-nausea drugs like Zofran. She talked candidly about the indignities endured in a time when insurance companies didn’t know if they should cover wigs, about her ballsy confrontations with the insipidly bureaucratic receptionist about the need for such coverage.
That’s right. She had us laughing our asses off. About cancer.
It was laughter of recognition. A room full of survivors laughed because we knew. It was laughter of belonging. Her stories affirmed our own surreal experiences in the strange, alternative universe of cancer treatment.
During the retreat, we got that message over and over again. Brené Brown praised the strength of our vulnerability and the importance of our stories. Heidi Adams of Planet Cancer assured us that bearing witness to what we experience is, in itself, a form of activism. It paves the way for those who come after us, shining a light on this treacherous path we walk on.
And, indeed, I found that to be the case. Every woman I met who honestly told her story gave me a gift. The woman who had my same diagnosis who could not tolerate the chemo drugs and had to stop her treatment gave me a profound sense of gratitude for my own clinical response. The women living with metastatic disease helped me face my fears and recognize that I would not cease to be myself should that become my fate. The women who managed to work through their treatments or who made profound life changes in the face of their own mortality inspired me with their tenacity and courage.
We survivors need each other. We live in an emotional reality that might be conceptualized but not fully understood by others who are outside of our experience, no matter how much they love us. It is often a lonely place.
This week, when Elizabeth Edwards’ announced her decision to stop treatment, it felt like a punch in the gut to me. She was the public face of metastatic breast cancer, a disease that belies the typical narrative of the noble sister bucking up for a cure.
I tweeted about the news, along with others. In fact, I went into a twitter rant about the perpetual, cumulative losses of cancer. (You can see the kinds of things I was saying here, here, and here.)
Soon Edwards’ news spread like an electric current throughout my networks.
The next day, we learned that she had died.
Edwards’ story had different resonances for each of us, playing off of different notes of sadness and loss. With the first news, I kept imagining her family’s grief, remembering the awful mixture of relief and sorrow when we came to terms with my brother’s need to end treatment. Others who lost loved ones felt their own painful memories resurface.
When we learned of her death, we were struck again, and our mutual support continued. Mothers with cancer felt the unspeakable despair for the young Edwards children left behind. Those of us who struggle with the raw deal we have been handed with this disease remembered her courage and resilience. Her death became a focal point for my blogging friends, as people expressed the wide range of emotions that her death had left us with.
Just as so many of us only know each other through the words we share in our blogs or on Twitter, we knew Elizabeth through her words. And, as our words connect us to each other in this strange and lonely world, many of us felt that connection to her, another accidental tourist in Cancerland.
How peculiar to have the wind knocked out of me because a stranger has died. This is new emotional terrain for me. I didn’t cry when Princess Diana died. I don’t feel fazed by celebrity deaths in general.
And yet it makes perfect sense. There was catharsis in laughing with my fellow survivors at Kathy LaTour’s cancer comedy shtick. And there is catharsis in crying together now over losing one of our own.
Elizabeth Edwards had this to say about facing the strange world we enter into with a cancer diagnosis:
Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.
I am so glad I am not in this less good place alone. You help me to be resilient. Thank you for your company.
I wanted to commemorate my past year somehow. I thought of writing an entry about before and after, but it was too complex and probably of interest to nobody but me.
Instead I made a slide show of my year of treatment. I thought it was going to be emotionally difficult, seeing myself go from healthy to sick and somewhat back again.
What surprised me was how happy this made me. I had tons of pictures of the friends and family who came to help and support us. There are even a bunch of folks who helped out and are not in this slide show. I had so many pictures of my kids looking like kids. I know there were important parts of the year that got left off camera, but seeing how we managed to stick together, with all of this love as a glue, was healing.
The music is “Here I go again” by Danny Salazar. Right after I was diagnosed and we were in that awful waiting stage, my husband and I discovered his band. He was playing in a local dive and we tried to go every week. This song spoke to us, and we got to dance and sing along to it quite a lot in those early days.
I’m supposed to be almost done with treatment, right? This is supposed to be that rocky but ultimately blissful part where I feel immense gratitude for my survival and start to get pieces of my life back?
I have Stage 1 lymphedema. (Yes, they stage that too. A poor choice in diagnostic taxonomy, if you ask me. Anyone prone to lymphedema is already traumatized from the last disease that they had staged. Why not leave out the numbers and just call it early, middle, and advanced?)
The Barbies don’t have to deal with lymphedema. Their lives are perfect.
I have to go to physical therapy appointments twice a week. I have to wear a ginormous compression bra 24/7 until my lymphedema resolves. I have to do repetitive exercises that make me want to cry from boredom.
This is not getting my life back.
Today I went to see the physical therapist. I got grumpy. Don’t get me wrong: I adore her. She is fabulous.
She was showing me a “self-tickle” exercise I need to do. She told me to do it everyday, fifteen minutes before I get out of bed in the morning. I’m pretty sure I scowled.
It seemed like yet another cancer treatment geared toward the rich, retired, or childless.
My sleep is dysfunctional. I become unfathomably fatigued somewhere slightly past midday. I often have difficulty falling asleep. I have trouble staying asleep because of the pain in my ribs. Most mornings, I wake up with an alarm because I need to get my kids to school.
The idea of getting up 15 minutes earlier for a self-tickle therapy session brought out my inner adolescent. I told the therapist so. I unleashed the litany of annoying things I am still having to deal with, the losses I am facing, the numerous obstacles between me and My Life As I Know It, up to and including this ridiculous compression garment that makes me feel 30 years older because of its gravity-defying, granny bra feel.
“Hm. Yeah,” she said. “Don’t get up early. Maybe at bedtime?”
I wryly agreed that self-tickling at bedtime would be better. She could see I was still in a bit of a funk.
“What are you going to do to get yourself going again?” she asked kindly.
I frowned, but I was resigned. “I’ll figure it out. I always do.”
Not right away, apparently. I left her office feeling very sorry for myself. I am sick of having these lists of rules; of exercise diagrams with their little arrows pointing to line drawings of bowl cut dudes in seventies-era gym shorts; of all the things I have to do to stay out of pain. No hot baths? No massages in my “upper right quadrant”? Compression sleeves every time I exercise, go on long drives or fly? Maybe I should just forget all of this and let the chips fall where they may.
Pleasantly convinced of the injustice of my situation, I strode to the elevator bank with a nice gray cloud over my head. I pressed the button and waited. I’ve spent so long being a good cancer girl, earnestly following all the elaborate directions they give me, even when they are contradictory or unclear. It was all so unfair.
A moment later, a middle aged cowboy swaggered down the hall, closely trailed by a 14 year old girl swinging herself along on crutches decoratively webbed with hot pink duct tape. The father and daughter were joking and laughing.
Then I noticed. She had one leg.
The cowboy dad held a large plastic bag full of gauze and bandages. They were leaving the same oncological rehab clinic I had come from. Piecing the scene together, I suspect this was a new loss for her.
And there she was, laughing.
Nothing like a little perspective to end a good pity party.
