Finding solace in books

Last week was chemo appointment two. I ended up arriving early at the cancer agency with an hour to kill, so decided to check out their information centre on the first floor. Basically, it's a small library with free hats.

After nabbing a couple of new skull caps and discussing the merits of doing the head-shave with another cancer warrior, I asked the volunteer working that day if she had any books for children she could recommend.

Lo and behold, she found Where's Mom's Hair? If you read last week's post, you'll know talking to my son about the whole cancer thing has been weighing heavily on my mind.

All about timing

Even though I had already shaved my head, this book landed in my hands at the perfect time. Not only does it go through mom's shaving her head (at a head-shaving party, no less!), but it also walks through mom's experience going to chemo, with photos of her with the IV in. It talks about dad feeling sad when mom doesn't feel well after treatment. And it ends on a hopeful note.

I brought it home and that night, my son and I read Where's Mom's Hair? He was curious about the IV and wanted to know if my treatment was the same as the mom's in the book. And then he got very quiet. We finished the book and he gave me multiple hugs before bed.

He has no interest in reading the book again. And that's okay. I'm pretty sure it served its purpose.

How do I broach death with my kid

With all the goings on of late, the fellow in this photo is the No. 1 person I worry about.

Yesterday, my husband and I are took wee man to kindergarten orientation. I have all the normal fears about my child starting school, and then some.

On Monday, I had the chance to hash out these fears with a family counsellor at the cancer agency, and I'm grateful for that. My fears:

• Another child who has lost someone to cancer will tell my child I'm going to die.
• My child will act out because of frustration, making his first year of big-kid school not so fun.

The basis of my fears

There are a couple of reasons I'm worried about these particular points, especially the first one.

I have been warned by other parents who have gone through cancer treatments that kids can come home with misinformation from their peers.

My husband and I have kept our language simple and straight-forward when explaining my surgery and treatment to our son. However, this is his first experience with cancer. He knows my mother-in-law was sick, her lungs didn't work properly, and she died before mommy and daddy got married. But he doesn't know that she had cancer.

My sister, on the other hand, has the opposite challenge. My nephew, who is a year-and-a-half older than my son, knows people who have died of cancer. So my sister has been avoiding using the word when describing what's going on with me, out of concern he'll be upset because until now, for him cancer = death.

Time to tackle my fears

The counsellor and I talked about preparing my son by talking to him about what my cancer means, and what it doesn't - namely that I'm strong, I'm young, and my doctors are doing everything they can to help make sure it doesn't come back. 

Which sounds great in theory. But this brings up another fear, the unspeakable for everyone around me: what if we're all wrong? What if it does come back, and my son feels lied to?

This is one of those posts where I don't really have any clever quips to make me or anyone else feel better.

Operation fuck kancer: Bald on my terms

Here's me in my bald glory. I may have not won the genetic lottery as far as cancer goes, but I did luck out with a well-shapen head. We didn't go shiny bald, as I've started chemo and my skin is already feeling pretty sensitive, but we got pretty darn close.

A huge thank you to my hairdresser, Sherry, and today's entourage - George Smeltzer, Bret Taylor and Patti Catroppa. After the big shave, hubby, friends and I headed for Granville Island, where I purchased a new cap at Edie Hats. The breeze feels pretty awesome on my head, but it can get cold, so I thought a new hat was in order.

Why I cut it off

A few people asked me after my last post if I was certain I wanted to go this route, and I gave them an emphatic yes. Enough of my life is now beyond my control because of breast cancer. I can control my hair. And if what little I have left doesn't fall out, it will grow back.

I met Sherry, a fellow warrior who has beaten cancer to a pulp, early in my diagnosis. She cut my hair shortly after my surgery and mentioned that if I found out I was going to lose my hair, she'd be happy to shave it for me.

I pretty much decided then that I would rather be spared the experience of waking up with my hair detached like some sort of dead animal on my pillow. She was the first person I called when I found out I had to do chemo.

Sweet liberation

As a woman, my hair has certainly played a role in my life. Cutting, growing, dying, braiding, curling, perming, flat-ironing. I worried this morning that I might cry when it was shaved off, thinking of what I was losing. Instead, I felt liberated. When it comes back, I will be healthy. And I will be a new me.

Operation fuck kancer: Chemo begins

Getting prepped for chemo round one.

So yesterday I got the big middle digit.

My cancer was sent to California a couple weeks ago for Oncoltype DX testing, which basically tests how likely it is your cancer is going to return. This was all part of a study that I was offered to take part in because tests showed my cancer was estrogen-receptor positive, and it was present in less than three lymph nodes (two, for the record).

Anyway, the test revealed a couple things:

1. My cancer is not estrogen-receptor positive. 
2. My cancer is pretty fucking aggressive, enough that when I saw the score (45 out of 100), I said, "Fuck!" to which my oncologist replied, "Yeah, that's pretty much what I thought." If my cancer was estrogen positive, my score would have needed to be 25 or less to continue in the study, so mine is well above that bar.

The positive

The good thing is now I know what I'm dealing with. Plus I won't be given estrogen-blocking drugs which would be completely useless for me, not to mention a burden on my very basic extended health benefits (which will probably be depleted by the time I'm done the drugs that are supposed to help me through chemo).

Because my surgeon diligently removed all visible signs of my cancer, chemo is my insurance that the microscopic cells that could have been missed in all parts of my body will be annihilated. It will cut the risk of my cancer recurring in half, to about 20-25%. So that's a 75-80% chance it will not come back (glass 3/4-4/5 full)!

So, as I said to my oncologist, "Chemo me." 

The ugly, aka fear

Chemo brings with it a lot of fear. Fear of looking like I have cancer, even though technically I don't (at least not any that modern technology can see). And this is because of one of the many, many side effects I have been told about by my oncologist, the nurse at today's chemo teaching session, and my nurse at the chemo unit. 

The side effects are plentiful, and terrible. Actually, even though it will make me look sick, I'd rather lose my hair than experience vomiting, mouth sores, increased risk of infection, potential heart damage, and the list goes on. 

I'll actually be nipping the hair thing in the bud by visiting my hairdresser for a shave. She's one of the first people I called after yesterday's craptactular news. My middle digit right back at the situation.

Why I might not answer the phone

It likely didn't help that the woman next to me in the treatment room told me about her terrible side effects. She basically got them all, plus one weird foot-pain one that only 5% of people get. 

I was wondering if I should tell her I didn't want to talk about it when she said, "But you're a lot younger than me. So you're stronger, so you might not have these problems." I get that she was venting, but man. Here's hoping she's right.

So if you're my friend in the offline world, and I don't answer the phone, it's because I really don't want to talk about it right now. In particular, I don't want to talk about side effects, the chances I'm going to die before my kid is out of kindergarten, and all that heavy stuff. Right now, going there serves no purpose to me. Writing about it, on the other hand, is a bit easier.

Gratitude for MCA

I think "Gratitude" is good way to pay my respects to Adam Yauch, the Beastie Boys' MCA.

I would have been upset about Yauch's passing no matter what. Hearing he died of cancer as I wait for results on further tests on my cancer is salt in the wound.

I was lucky enough to see them play during their To the 5 Boroughs tour. I had never seen them live and it was like Christmas Day. I grinned like a giant dork throughout the whole show.

Thanks for the tunes, MCA. Condolences to your family and friends.

And a giant fuck you, cancer. Fuck you.

When kancer guidelines kollide with experience

My mom mailed me a care package, including the April issue of Alive which is chock-full of articles on the cancer - I highly recommend it. However, one article, "Breast Cancer Screening", left me confused.

New breast kancer screening guidelines

Last year, the Canadian Task Force on Preventative Health Care released new breast cancer screening guidelines. Highlights pertaining to women 40-49 that jumped out at me:

• Routine screening mammograms: not recommended
• Regular self breast exam: not recommended
• Regular breast exam performed by a doctor: not recommended

An unremarkable history

At 39, I'm a year shy of being a member of this age group. I've always been sporadic about performing self exams, because I didn't fit into the high-risk category.

There is no breast cancer in my family, except for my cousin Pam, and we are not related biologically. I'm active on a regular basis. I drink (or rather, drank), but limited it to weekends, generally moderately. I quit smoking several years ago. I breastfed.

In other words, I'm like a lot of women my age.

My kancer diagnosis

Like I said, I was sporadic with the self exams. I noticed some skin that looked off on my left breast. I get eczema, so thought little of it at first. Then I decided to check. Aha! A lump.

I booked an appointment with my family doctor. He checked. "I've felt a lot of cancer, and this doesn't feel like it. But because of the skin discolouration, let's send you for an ultrasound," he told me.

I was referred to Mount Saint Joseph in Vancouver, which I learned is *the* place to go for screening and treatment. They decided to give me a mammogram, then ultrasound.  And the rest, as they say, is history.

Where does this leave women

So the new recommendations have me wondering what women are supposed to do. I turn 40 later this year. Friends who have already reached the milestone and have been putting off their first mammogram have told me they'll now get it because of my experience.

I didn't think I had cancer. My doctor didn't think I had cancer. And my surgeon and oncologist agree I didn't fit into the high-risk category. 

That mammogram may have saved my life.

My humble opinion and a pitch

Trust your gut. If you think something is wrong, pursue it. If you don't agree with a doctor, get a second opinion, or a third. Be your own best advocate!

And in honour of Daffodil Day, I plug Mount Saint Joseph's fundraising campaign for a second mammogram machine.

There is a fundraiser on Saturday, May 12 at the Riverside Grand Ballroom. Tickets cost $75 a pop.

If you can't go, want to donate a different amount, or want more info, contact: 

• Nidhi at 778-928-9085 
• Satinder at 778-323-1078
• msjrabc@providencehealth.bc.ca

Friends help make kancer be less krappy

So my kid ended up in emergency last weekend, three days after my mom headed back to Ontario. Four stitches later, and not allowed to go to daycare or play like a normal 5-year-old boy made for a stressful week. Without my friends, I would have likely ended up in a padded room.

My new friends

There are the friends I've met at my current job, who I may never have encountered otherwise. Tony is one of them. He told me about the video above, and I told him I needed to see it. Tony knew I had a crappy week, and posted it today. Enjoy!

I came home, and saw Tony's video on my Facebook wall, after having a nice walk with another friend from work, Melissa. Just another reason to be glad I took my job. I'll share more about these fantastic folks in further posts.

My old friends

No, not old, old. I mean friends I've known for several years. Patti, who helped look after the boy the day after his accident. Bret and John, who helped us out the day of an oncologist's appointment by getting up in time to be here at the ungodly hour of 8 a.m., the former to babysit, and the latter to give us a lift. Erica, who gave me a lift to another appointment, and kept the kid entertained.

Then there are the many friends who have been helping to keep my spirits up with e-mails, texts, and phone calls. And my best friend of all, my husband, who is handling an excessive amount of crazy these days.

Play the kancer kard

If you're dealing with an illness, call on your friends. Don't feel guilty. Chances are, they'll go above and beyond the call of duty.