Archive for December, 2010

Annus Horribilus

12.31.2010

As 2010 comes to a close, I can’t look back.

The networks and interwebs are abuzz with recaps of the year –– Best of, Worst of, Most Important, Funniest, Craziest. My blogger buddies are doing wise and witty retrospective posts.

All I can think of as I cross the 2010 finish line is, “Ugh!”

I don’t want to look back. Like a seedling seeks the sun, my weary body and assaulted spirit turn toward the future.

The past few nights, I have had dreams of living in a war zone and being attacked by vampires. I wake up in a panic, relieved that I have narrowly escaped death.

And those words resonate in my mind everyday. “I almost died this year.”

If my treatment hadn’t worked, that would have been it for me. My cancer was aggressive and advanced.

I better understand the women I met who tell me that they have erased the memories of their chemotherapy. “It’s like a bad pregnancy,” one survivor told me. “You have the baby and the memories of suffering go away.”

I don’t quite have the metaphorical baby in my arms. I just see my altered body and struggle with my limited energy.  Despite all that the chemo wiped from my brain, I have not forgotten my suffering.

No, I don’t want to look back. I am instead staring straight ahead into the future.

Happy New Year, everyone. May it be a year of happiness, health and healing.

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“it’s not a big deal”

12.21.2010

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.

That will be a big deal.

A big deal I look forward to.

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Good Company

12.08.2010

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.

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