Book review: In the Body of the World

A couple of weeks ago, I was lucky to catch Eve Ensler's book reading at Capilano University.

I had read an interview with her in the Vancouver Sun the weekend before the event. Until then, I didn't know Ensler had been treated for uterine cancer. In the interview, she talked about her rage. And I was sold.

As Ensler shared anecdotes of her experience and read from The Body of the World, I felt that kinship I tend to feel when I meet another cancer warrior. All too often, I felt alone during my treatment, despite my friends' and family's efforts to assure me I was not.

Sharing her fear of stopping and being still, Ensler recalled telling someone, "I don't want to be a fucking patient." Amen, sister.

"I feel like this book came from my body," Ensler said. And it reads like it.

In fact, when I completed the book days after seeing her speak, I felt like it could have come from my body too. I told my husband, "It feels like she reached inside my brain and put my words on paper."

The one overwhelming feeling I had, particularly on the days the chemo was exhausting me, was failure. I was angry because my body had failed me. And I was worried if the chemo didn't work and the cancer metastasized, it would be the ultimate failure.

Ensler writes, "All the hundreds of cards and letters and emails I received said the same thing. 'We have no doubt you will make it. You are a force of nature. Nothing can stop you. You will beat this, Eve. You're a fighter.' I know people are trying to give me support and make me feel strong, but sometimes it makes me anxious. What if it just isn't true? What if I can't beat this or it has nothing to do with me? Will it mean I'm a failure and or a failed force of nature, like one of those New York City hurricanes that never shows up after you've put huge taped Xs on your windows? What if it isn't about fighting?"

I wept as I read this particular passage not out of grief but out of relief that someone else got it, that I wasn't alone.

The Body of the World is raw, gut-wrenching, hilarious, and inspirational. If you are a woman, regardless of whether or not you're a cancer warrior, give it a read. I'm pretty sure you won't feel alone either when you are done.

Caring for my wife through cancer

I'm honoured to run today's guest post by Cameron Von St. James, who took care of his wife, Heather, during her treatment for mesothelioma and their infant daughter. Thank you to all the caregivers out there. - Lori

Cameron Von St. James

November 21, 2005 is a day that will be burned in my memory forever. That is the day that my wife Heather received her malignant pleural mesothelioma cancer diagnosis. Immediately, my work as a caregiver started.

It is an understatement to say that I was unprepared for the task. Only three months earlier, Heather and I celebrated the birth of our only child, Lily. Just like any other family, we were planning holiday celebrations and excitedly preparing for Lily’s first Christmas. However, our holiday plans would quickly change, as we began down a long and difficult road to beat cancer.




My journey to becoming a caregiver

My duties as a caregiver began before we even left the doctor’s office where we received the diagnosis.

Heather’s doctor described her cancer in detail. He said we needed a specialist. We had three options. One was the local university hospital. Another was a great regional hospital, but they did not have a mesothelioma program. The third option would be to go all the way to Boston to see Dr. David Sugarbaker, a specialist in mesothelioma.

Looking at Heather, I could see she was in shock and unable to make a decision. Her eyes pleaded with me for help. I made the snap decision to go to Boston. I asked our doctor to help us make the arrangements. This decision was only the first of many I would have to help make as Heather’s caregiver.

Juggling work, caregiving, and baby




In the next two months, we experienced complete chaos as our daily routines totally changed. Heather and I worked full-time jobs before she was diagnosed with cancer. After the diagnosis, she was too sick to work, and I could only work part time in order to care for her.

When I was not at work, I went with my wife to her doctor’s appointments, made travel arrangements for Boston, and took care of our baby, Lily.

It did not take long for me to feel overwhelmed with everything I had to do. I feared losing Heather, ending up broke and homeless with a baby girl. When these fears overwhelmed me, I would end up on the kitchen floor sobbing. I wanted all of this to disappear. Fortunately, I did not let Heather see me like this. I knew I had to be strong for her.




Letting people help




Our friends, family and even complete strangers helped Heather and me. We received everything from words of comfort to financial assistance. We will never be able to adequately thank everyone who helped.

If any of you or your family is diagnosed with cancer and someone offers to help, let them help. It lets you know that you are not alone. People care about you. They can help ease your burden.

Your emotions




Caring for someone with cancer is challenging. You will feel stress, fear and anger. Being a caregiver will probably be the most difficult challenge you will ever face. You cannot simply walk away from this responsibility like you could from a job or attending college.

Do not allow negative emotions take over. It is all right to have bad days. However, it is important to never give up hope.

Life after treatment

After mesothelioma surgery, chemotherapy and radiation, Heather beat the cancer. Seven years after her diagnosis, she is cancer free. It took years for our lives to resume as normal. However, I learned how to use my determination to my advantage. I had learned that time is precious.

Two years after Heather’s diagnosis, while I was working full time and caring for Heather and Lily, I decided to attend college and study information technology. My time as a caregiver gave me the skills and the courage I needed to pursue this dream.

I graduated with high honors and even spoke at my graduation. At graduation, I spoke about how I never thought I would be on a stage giving a graduation speech just a few years earlier, sitting in a doctor’s office hearing that my wife had cancer.

I encouraged the graduating class and those attending to never give up on their dreams. Each of us can achieve more than we ever thought possible. All we have to do is believe in ourselves.

Thank you, Cameron, for sharing your story. See a video of Heather's story on the Mesothelioma Cancer Alliance website.


Kancer kronicles: What a difference one year makes

My new do. ©kittelberg writes

One year ago, I started the #kancerkronicles. I had just had my drain removed, a major milestone in my mind.

My body

At this point last year, I was only walking a few blocks here and there. Tomorrow, I'm taking part in six fitness classes at the Bust a Move fundraiser for the BC Cancer Foundation. You can still donate, by the way!

I run two to three days a week, and have signed up for my first half marathon in September.

My hair

I had just had my hair cut short, in anticipation it would soon be falling out or shaved (I opted for the big shave to make it less traumatic when it did fall out). I'd wanted short hair forever, but kept putting it off until I lost weight. Yesterday, I had a bunch of my new chemo curls shaved off because I wanted to.

My kid

When this all started, I was fearful of talking to my son about cancer, which in part lead to some serious behaviour issues. I couldn't see it ending. I wondered if cancer was going to send him down an irreversible path that would lead to a lifetime of unhappiness.

Today, he has several friends I anticipate he will have for the rest of his life. He reads, does math, and can navigate the monkey bars hand over hand from one end to the other. He is compassionate and thoughtful. Sure, he still has his moments but he's six after all, and let's face it, he comes by his stubbornness, ahem, honestly.

My life

I still have fears: around cancer, parenting, money, work to name a few. But I'm working hard to do things despite my fear, and stop compromising. I am me, and I need to do the things that honour this.

To you, my haircut is simply that, a haircut. To me, it's symbolic that I'm going to be who I am and who I want to be, and not hide behind excuses any more. I'm sure I'll stumble here and there. But I was given another chance at this life for a reason. I'm going to try to do it right.

Determining the next step

I think I've figured out the reason I feel so out of sorts lately.

After getting through treatment for a deadly disease, I feel the need to do something great. But I can't figure out what that something should be.

Is this about advancing my career? Writing a book? Writing a screenplay for the movie/sitcom/next big thing my friends and I talk about?

Is it about letting go of some of this career stuff and refocusing who I am as a parent?

Is it about attaining the goal of running my first half-marathon? If so, what happens after that?

Or is it about doing something I haven't thought of yet, but which will seem like the obvious choice once I realize what that something is?

As much as I realize I have to figure this out for myself, part of me wants someone else to make the decision for me.

Kicking kancer's ass one shirt at a time

The Juggernauts (from left): Wynter Trace, Chrissy Watson,
me (in team shirt), and Kirstin Ellis. Photo © Image Maker

You may have heard my Bust a Move team is selling t-shirts with a saucy illustration by Bret Taylor as a fundraiser.

It's the perfect opportunity to support a great cause and local art all in one fell swoop. Just head to Red Bubble and buy your shirt, pronto!

Now that you've made your purchase and have come back, here's a bit about how it all happened.

About the artist

If you're on Twitter and into art, cars, or rock 'n roll, you know Bret Taylor as @BretInVancouver. I've known Bret since George and I visited Vancouver in May 1999.

It's been mighty inspiring to see him develop his style, and watch his following grow. We've road-tripped, we've seen many a rock show, and we've eaten a lot of nachos. As a member of our core circle of friends, Bret is also one of the people who has helped us out in a pinch or two during my treatment, not to mention he was a member of the cheering squad the day I had my head shaved.

So when I thought a team t-shirt would be nice, there was no question about who I wanted to do the illustration.

About the design

Bret has my complete confidence when it comes to design, so I threw a couple of concepts at him. He liked the can-can dancer idea, and we agreed a message about kicking kancer's ass would be a good fit. I opted to misspell kancer for consistency with the #kancerkronicles. And Bret pretty much took it from there.

When he sent me the completed illustration, I was thrilled. From the tiny red hats to the Louboutin red soles, I was sold.

I won't knock anyone for donning the pink at these breast cancer fundraisers. I've done it myself. But nowadays, red speaks to me more. It symbolizes passion and anger. Hence my choosing the red shirt for myself.

Another shameless plug

So now that you know a little more about it, if you haven't already, head over to Red Bubble and order yourself a shirt.

Or if you prefer to have the tax deduction, go directly to my Bust a Move page to make a donation.

And don't forget to head to Bret's website to see more of his work. Oh, and one place I will be wearing pink? Bret's upcoming art show with Alex Stewart, Hot Pink. Drop by and say hi if you're in the Vancouver area.

Coordinating help for a loved one

I've sung praises of our network of friends many, many times in this blog. They were our lifeline during my treatment last year.

However, one of the huge challenges we faced was keeping everyone organized. Did I need to book a volunteer driver for chemo, or did someone offer to drive me? Had someone already said they would pick Malcolm up at daycare? And who was making dinner?

Remembering it all, even in the iPhones age was tough, particularly once chemo brain set in.

Eventually, George took on the vast majority of the organizing, along with being my caregiver. Frankly, it's too much work for one person to be expected to do. He did it without complaint, but it worried me that he felt he had to shoulder so much.

CaringBridge

Today, I received a message from a friend, who knows a woman who is just beginning the whole cancer treatment gong show. She thought I might be able to offer her support. She sent me a link to her friend's story on CaringBridge.

I clicked, and holy crap, do I ever wish I'd known about CaringBridge last spring!

You can set up a site, where you can connect with family and friends, keep them updated on your health (it's open to people with medical issues of all sorts). It's all in a protected space, with privacy settings, no ads.

Clearly, I don't have issues sharing information in a public format. But here's what really interested me: they also have a calendar you can set up (or a loved one can on your behalf).

Fill in what's needed and when, and your friends and family can pick the tasks they're able to take on - cooking, getting you around, providing childcare, feeding the cat, etc.

How did I not hear about this until now?

What you can do

So, if you know someone who needs this sort of support, tell them about CaringBridge, or better yet, set up a site and calendar for them.

And if you're feeling philanthropic, head to the CaringBridge donations page.

Operation fuck kancer: An attempt to decompress

Trying to get back to normal, or figure out my "new normal" as the cancer warriors like to call it, is proving difficult.

I've been back at work full-time for the past few weeks. Which feels great. I enjoy my job, I love what I do, and as I've written many, many times, I work with an incredibly supportive team.

If working was all I had to do, it would be fine. But I'm a parent. And a wife. And I'm trying to fundraise for Bust a Move. And it's almost Christmas, with barely a dent made in my shopping list. You get the point.

I'm overwhelmed.

I know something has to give, but what? It won't be my family. And my family has to eat, so I have to work.

So I'm keeping this post short. I'm off to write the rest of my Christmas cards. Then I'm going to bed.

Just wanted to let you all know I'm still alive and kicking. And just trying to figure it all out.