sometimes you confront it

photo: Andrea Ross

A few years ago I wrote a list that I turned into a blog post called "whiskers on kittens." This is the opposite of that post, because sometimes you need to deal with fear head on:

Dying.

Getting old. (I'm aware of the irony of this.)

Heights.

Being a terrible writer and not realizing it. (I had a dream last night that a former boss morphed into my father and he/they said, "You don't write. You just throw words on paper.")

Dementia.

Being irrelevant.

Going blind.

Fears too big to name. (They involve loved ones and I'm just not going there.)

Being at a cocktail party with nothing to say.

Being forgotten.

Birds.

photo: Mark Blevis

time is still relative

November 1st.

That's when I'll meet the radiation oncologist, ask some more questions, get more information and most i mportantly - MAKE A PLAN.

This morning, I spoke to Rejeanne, the nurse who works with my medical oncologist. I must have gasped when she told me the date of my appointment because she said (and kindly),  "If Dr. Gertler thought the appointment needed to happen sooner, he would have said something."

And so I wait. November 1st is only a little over 2 weeks away. 

It feels like an eternity.

have you read "Not Done Yet"?

Have you read this book yet?

I think I have all the remaining copies of Not Done Yet : Living Through Breast Cancer in my attic. I'm selling them for $25 (tax included) plus shipping. 

I'm told it's a pretty good book. You should read it. Or give it to someone you love.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.

limits on multi-tasking (on not doing pelvic lifts while I brush my teeth)

You'd think that since I don't have a full-time job (or even a part-time one) and both my kids are in school that time management would be a breeze, yet I still find myself struggling to get things done.

Part of that is pure procrastination (it's a slippery slope from checking my email to reading 10 tabloid stories someone linked to on Facebook). 

Part of it is feeling overwhelmed (where to start on a large project? which project should I work on first?).

It's also that I have changed the way that I live my life. Before cancer, when I worked full time, it seemed that every minute needed to be spent in a productive way. I tore myself out of bed in the morning as though jolted by a starter pistol and collapsed back in long after I knew I was tired. I answered emails while watching TV, talked on the phone while I played with my kids, read over documents while I rode the bus. There were seldom any truly quiet moments.

Cancer pushed me off that treadmill. In some ways I miss it but in lots more ways I don't.

While I still keep lists obsessively, I try not to obsess over getting through them. And over the last few months I've begun to embrace the efficiency of doing one thing at a time and doing it to the best of my ability. I still have a long way to go.

Every time I read a newspaper online or leaf through a magazine, I am urged to multi-task in every possible way. "Give yourself a facial while you make dinner!" "Fold laundry while you return calls!" "Tighten your butt muscles while you brush your teeth!" It all feels exhausting to me.

I am very fortunate to have been given the gift of time. I'm working at making it work for me. I want to focus on playing the game, not worrying about whether I'm going to drop the ball.

brain fart

Today, I set myself up to do a phone interview with an author based in Los Angeles, California. 

The whole thing was set up through her publicist and we'd worked out a time of 12:30pm PST for me to call.

Counting the three hour time difference in the wrong direction, I came very, very close to calling her at 6:30am PST. This would have been bad, especially because she writes in her memoir that she is most definitely not a morning person.

This is embarrassing. The publicist first suggested an earlier time and I balked because it would be "the craziest possible time in our house, as we try to get everyone out the door." The time suggested had been 11:00am PST, which really would have been 2:00pm EST, which would have been fine.

I really should know better. I spent three years on the West Coast, in the heart of PST-land. I also spent 15 years working for national organizations and was adept at working out time zones.

My brain is rusty.

The interview is really scheduled for 3:30 EST. I will be in the middle of my afternoon slump but at least I know I'm ready.

keep your head down

It's begun.

The annual barrage of pinkwashed crap and pinxploitation is in full swing.

And I really don't feel like talking about it. What I want to do is stay home for the rest of October and not open any emails until this month is done. Enough already. Now that it seems that more people can relate to my pink ribbon anathema, why haven't the pitches slowed down or the products become harder to find?

I want to make like an ostrich and just wait until it all goes away.

Instead, and to spare myself the need to get worked into a lather, I'll direct you to the right sidebar of this blog. Scroll down to the "labels." Click on the one marked "don't buy pink crap" (or just click on this link to go there directly) and you can read rants, observations, a little analysis and links to the blogs of some compadres.

Speaking of compadres, these great bloggers are kindred spirits, when it comes to pinkwashing:

i hatebreastcancer

Uneasy Pink

Gayle Sulik (author of Pink Ribbon Blues)

The Assertive Cancer Patient

Nancy's Point

and, of course, the late, great Rachel of Cancer Culture Chronicles

I'm sure I'm forgetting some bloggers and I'm sure there are more that I don't know. Do you have others you could add to the list? Let's make an anti-pink blogroll!

(As an aside, I note that all but one of these blogs is written by women with metastasis. I will be writing more about living with mets amidst the pink ribbons in the next few days)

I also can't resist another chance to put in a plug for Pink Ribbons Inc, the movie that explains it all and does it very powerfully.

Updated to add:

 A great article from the web site xojane: I Hate Breast Cancer 'Awareness' Month.

October:  Breast Cancer Awareness Scam Month by Suzanne Reisman. Suzanne writes a post for BlogHer on this subject every year. And her words meant a great deal to me in October 2006 when the shock of a pinkwashed world first hit me. I even quoted her in my book!

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

flip side

I read enneagrams the way some folks read horoscopes (if you're into such things, I'm a textbook 1). . Here are two that have arrived in my inbox this week:

"If you become unhealthy, a negative feature of your personality is the tendancy to become bitter, harsh and inflexible. Watch yourself for this today."

"Remember your outstanding healthy qualities include caring deeply about the dignity of your fellow humans and maintaining strong personal convictions. Notice how you express these today."

My best. And my worst. Summarized very neatly.

i can relate.

time passes

My kids went back to school today. My oldest is now 14 and in high school. My baby is in Grade 4. They were 2 and 7 when I was first diagnosed with breast cancer and 3 and 8 when it became metastatic. They were 4 and 9 when I went into remission. Now, five years later, I look at these beautiful boys - scanning them for the scars, anxieties and challenges that are the fallout of living with a mother with a life threatening illness.

The signs are there but they are strong. We all have good days and bad but they are resillient. They are bright, talented, creative, insightful, empathetic individuals. And they are very, very brave.

I love my boys and I'm so proud of them.

finding hope beyond the pink ribbons

My friend Sean Moore, Orit's husband, posted the following note on FB. I reprint it here with his permission:

An enormous number of people have asked about donations in Orit’s name over the past 2 weeks. As many of you know, Orit was very academically minded and spent considerable time reading the medical literature and evaluating charities. We found that most cancer research charities had very high administration fees and poor impact factors. We came across some specific research, which has very good promise in helping find a cure. The Ottawa Hospital Foundation has set up a fund, which will be used 100% to go directly to this work. The discovery is very novel and was published in the world’s most prestigious scientific journal in June of this year. I will include a link to their latest publication and an easy to understand explanation:

http://www.fbmc.fcen.uba.ar/materias/qbiia/seminarios-2012/seminario-6-28-y-30-de-mayo.-hipoxia-y-autofagia/A-Nature%2012%20AOP%20may6.pdf

Here is a link to an easy to understand summary of the research:

http://www.ottawacitizen.com/health/discovery+offers+hope+cancer+heart+disease+miracle+drugs+with+video/6574966/story.html

Donations in Orit’s name can be made online by using the following link:

https://secure.e2rm.com/registrant/donate.aspx?TributeType=Memoriam&EventID=1819&LangPref=en-CA&Referrer=http%3A%2F%2Fohfoundation.ca%2F

The first page will capture the information regarding the person making the donation. Under “Donation Information”, please choose “Other” in the drop down menu and specify “As requested by family” in the space provided. Once the donation portion is completed, you’ll be directed to a page to indicate that the donation is being made in memory of Orit and to indicate if an acknowledgement should be sent. Tax receipts are immediately available after donation is done.

Donations can be sent by mail (indicate in memory of Orit Fruchtman) to
The Ottawa Hospital Foundation, 737 Parkdale Ave, 1st Floor, Ottawa, ON K1Y1J8.

Donations can also be taken by phone by calling (613) 761-4295.

1 in 8 women will get breast cancer. Research is the only path to finding better treatments and a cure to this disease, which has devastated our family and so many others across the world.

Love, Sean

"The true meaning of life is to plant trees, under whose shade you do not expect to sit.”  Nelson Henderson

This message had a very strong impact on me. Orit was a very smart woman. Sean is a doctor. I trust their judgement. And I agree with their priorities. 


Let's do something great to honour a wonderful woman. Let's help fund research that will effect real change. I donated. Will you?

for Orit

photo: Andrea Ross/Mark Blevis

As of Saturday, June 30th, I have been in remission for five years. This is a huge milestone and I'm very fortunate to have the chance to mark it.


But I really didn't feel like celebrating.


Just a couple of days before, my beautiful friend Orit passed away, leaving three young kids, a loving spouse and a large group of family and friends in deep mourning. I spoke to her husband Sean early on the day she died and afterwards posted on Facebook what was for me an unusually vague status update:

"Warning: This would not be a good day to tell me that everything happens for a reason. Sometimes wrong stuff just happens. And sometimes life is terribly unfair."

So much about cancer is a crap shoot. Some get cancer, some don't. Some walk away, others live with the illness forever. Some live for a long time and some die way before they are ready to go.


Orit had strength and determination and a great love for her family and community. She had access to the best health care and, prior to being diagnosed with Stage 4 breast cancer, was healthy and fit. She never stopped fighting to live and she most definitely did not lose a battle.


Despite the fact that we lived in the same neighbourhood, I met Orit less than a year ago, not long after her cancer diagnosis. Our illness brought us together but we soon found that we had so much more than than cancer in common. We both found humour in the world around us, sought to nurture our creative selves and wore our hearts on our sleeves when it came to those around us. I had the privilege of watching her face light up when her husband got home and the clear eyed love she had for each of her kids. We had the chance to talk about being in cross-cultural relationships and about the values we hoped to share with our kids. We talked about petty grievances and big ideas. And we shared our fears, hopes, sorrow and anger at facing the scourge that is cancer.


One evening, as we were yarn bombing our local community centre, Orit and I sat on the pavement sewing a 6 foot tube of yarn onto a bike rack. As we took turns holding the piece in place and passing the needle, she suddenly said. "I really wish that we had the chance to know each other before. We would have been such good friends."


I felt my heart break as I struggled to find an appropriate and truthful answer. But I knew it would be wrong to say "We will get to be friends for a long time" or even "It's going to be OK." Instead, I said swallowing the lump in my throat, "I agree. I wish I'd met you sooner as well."


The last time I saw Orit, we had tea on her front porch while she knit. She had been in the hospital the night before because of unmanageable pain. That morning she seemed fine, if weak. She talked about convincing her oncologist to try one last course of treatment and her profound grief at the thought of leaving her children. We both cried.


And then I left for a yoga class, borrowing a t-shirt before I left. It didn't occur to me that I would not see her again.


A few days later, she was hospitalized. And a few days after that, she died.


I wish I had told her how amazing I thought she was. That I thought she was a great mother, an interesting person and inspiring in a way that transcended her illness. I wish I'd said how beautiful she was.


I've struggled for two weeks to write this blog post. Orit's family have been so kind, loving and generous to me but I can't help thinking how grossly unfairly life has treated them.


Which is why I haven't felt like celebrating.


I am very lucky to be alive and I hope to be around writing blog posts in another 5 years. None of us knows when our time will come. We need to live bravely, love fiercely and hold on to the things that matter. We need to tell those we care for how much they mean to us and to do those things we always wanted to do. No matter how long we have on this earth, we need to truly live.


I, for one, plan on doing a little more yarn bombing. I have Orit's last piece of knitting so a little bit of her will be there as well.


Care to join us?

video: Mark Blevis

you must watch this

Update: You can now buy or rent your very own copy of Pink Ribbons Inc.! 


You can download it.


You can rent a digital version.


You can pre-order the DVD by calling 1-800-267-7710.






I wish I could give a copy of Pink Ribbons Inc to anyone who has ever asked me why I'm down on the pink ribbon industry. The documentary summarizes all that is wrong with pinkwashing, in the most powerful terms possible: through interviews, images, facts and with women telling their own stories.

My 13 year old son and my mother in law saw Pink Ribbons Inc when it opened at the Toronto International Film Festival in September. They were both blown away. My son is a film buff and he declared this one to be one of the best documentaries he'd every seen. Last week, I was invited to an advance screening of the film and - although I was already sympatico with the message - I was riveted, moved and angered. It's incredibly well done.


The movie is based on the book by Dr. Samantha King (the author is featured in the movie) and could be separated into three threads (each of which could make it's own documentary):


The truth about cause marketing and the pink ribbons industry.


The lack of discussion and resources going into determining the environmental causes of breast cancer (or any cancer). 


How traumatic and alienating the pink ribbon industry and talk of "survivorship" is to women who live with metastasis.


It's all extremely powerful and persuasive.


My one quibble with the film is the depiction of those who participate in runs/walks for the cure as naive dupes. While there is no doubt that many of us have been led to believe that we are effecting real change when we fundraise and walk, our reasons for doing so may be more complex than the movie allows.


Taking part in these walks can be fun - a celebration of life and community. Even with all my objections and analysis, I have felt myself swept up in the fun and emotion of the Run for the Cure - all the while wearing my No Pink for Profit t-shirt. And what's more not all the money raised at every walk goes to undefined research. I know that the Week end to end Women's Cancers in Montreal (a walk featured in the documentary) built a survivorship centre from funds raised that's of concrete use to all women with breast cancer.


But the quibble is a minor one and the movie is terrific. You should see it. In Ottawa, the movie will be at the Mayfair Orleans from February 3 to 9 and the ByTowne from February 17 to 23. Check your local listings often and go! Documentaries don't stay in the theatres for very long.

schoolyard currency

Last night, my 9 year old lost a baby tooth. This didn't strike me as such a big deal - he's been losing them (including all his front teeth) since he was 6. He, however, was thrilled. "I can't wait to tell my friends."


I didn't think his friends would be especially impressed  but I have never been a nine year old boy. This morning, he walked into the yard at school and straight over to two friends. Watching from a distance, I saw him say something and open his mouth. His friends peered in excitedly and one shouted "Ooh! Bloody!"


I turned to go home, leaving behind a very happy boy all shored up and ready to have a great day.

proud mama requests your support

 My son and his friends made this video as their entry for a contest. Canadian indie rock artist Joel Plaskett (we're big fans in our house) has invited folks to make a music video for a song from his Scrappy Happiness album. The winner gets a free backyard concert!


 This is where you come in. Please watch the video. If you like it (and how could you not - it's brilliant!), click through to YouTube and "like" it (the like button is under the video on the left side). I know it's a bit of a popularity contest but I'm proud of these kids and think they should be encouraged (and not just because I'm Sacha's mother!). 


 

This image has been appearing as a status update all over Facebook. It really bothers me, and I can't even really articulate why. I think part of me just finds it silly - do we really all think that 97% of our friends won't repost and that only 3% will.?Where do those numbers come from?


The message also implies that if you don't repost, it's because you really don't hate cancer - that you are apathetic or worse. But posting a statement that cancer is bad, is not an act of activism and affects no real change.


In addition, I'm bothered by the statement "all someone battling cancer wants...". Really? You think that's true of every single cancer patient? As an individual person living with cancer I have wanted a new mobile phone and dreamed of fixing up my house. I've also wanted a dog, for my kids to do more around the house, to travel and be able to watch something good on TV on a Friday night. While I've struggled with my health, I have remained a whole person with complex wants, needs and desires. The illness hasn't changed that.


Finally - and I know this doesn't apply to all of us with cancer - but I don't like the "battling" and "war" analogies, especially when we go on to say someone has "lost" or "won" the war. It's not true that only the fighters and the strong survive. And it's certainly not through that those who pass away just didn't fight hard enough.


I know that the people who post this status update have big hearts and are very well intentioned. I don't want to sound mean-spirited or ungrateful. I just want to let you know that this cancer patient would prefer you did something else. Something real. Something more.

look what we did!

Remember my secret happy project?


We did it! We yarn-bombed a corner of my neighbourhood. We were 10 knitters, 14 installers and one videographer. It was so much work but so much fun. I dare you to watch this short video without smiling:


   
(video: Mark Blevis)


There are lots more photos up at our web site, Frivolknitty.com. It was so much fun - we're already planning for the next time!


An observer pointed out that three of the knitters/installers involved in this project have lived with breast cancer. I don't think it's coincidence that we all wanted to share in a little frivolity.

on finding my Thing

I had a breakthrough moment a few weeks ago. I've written quite a few posts over the last few years about the loss of identity I experienced as a result of having to leave the full-time work force. Letting go of my identity as a long-hour-working-communications-research-professional-activist-labour-staffer was really hard.

Since going into remission (and no longer feeling that fighting for my life was my main job) I've done an awful lot of navel gazing and spent a lot of hours in therapy trying to figure out who I am, since I no longer define myself by The Job.

Sacha, my perceptive and thoughtful son sent me a link to a wonderful article and inspiring article by Jesse Thorn. His instincts were right- I've been looking for my Thing.

I think I've been putting too much weight on each new idea, though. Every potential project would need to give me a new identity - provide the answer for when someone asks "What do you do?" 

But the truth is that no project can fulfill all of anyone's needs. And I was scaring myself off of trying new stuff because I was afraid that it wouldn't work out and that I'd be searching all over again. 

My "aha!" moment came with what should have been a pretty straightforward realization. I'm not looking to redefine myself. Overall, I'm pretty happy with who I am. What I want is to feel fulfilled, purposeful and happy.

I will never be able to define myself with just one word. I am a mother, wife, friend, writer, lover of dogs and books, social observer, activist in and out of the armchair and, occasionally, an opinionated bitch.

My Thing doesn't have to be my everything. I just need to figure out the things I love to do and allow myself the time to do them. I need to be brave and take risks but if today's Thing doesn't work out in the long run, that's OK too.

I may never have a few short words with which I can define myself at cocktail parties but I hardly every go to those anyway. Life isn't about creating an identity that others can understand and judge. Life is about living in the best way that I possibly can.

filling that prescription

A few years ago, I worked my way through the Artist's Way. I found the process to be extremely helpful in getting me past my writer's block and I followed the program dilligently - except for one component. In all twelve weeks, I did the Artist's Date exactly once.

I know in my head that play time fills the soul. And I know that the repetitive motions of knitting can spark creativity and be enormously soothing. Yet I seldom set aside time just to knit unless I'm watching a movie with my kids,out on a knit date or on a road trip. And I know, too that I chose knitting as my play because I usually have a product at the end that someone can use. This makes the time easier to justify.

But human beings need to play in order to be happy. And the benefits of creative time spill over in to so many other aspects of our lives. Blondie, one of my favourite bloggers wrote in a recent post she wrote after a night of insomnia:

...I got up and went to the couch. Sitting on the footrest was the latest cross stitch project I've been working on. It hadn't been touched since sometime last week. I can't even remember when I started it? I picked it up and worked on a little flower. In no time at all, I felt my body and spirit relaxing. I realized I was holding my entire body slightly UP and in a very unusual and stiff way. I was wound up TIGHT. If you touched me, I probably would have zapped you with a long, blue, electric arc. But after a half hour of stitching, I was much more calm. Even the kittehs seemed more relaxed. Collectively, we were detoxing. And after I made some good stitching progress, I made myself go lie back down and try to sleep. Eventually, I did.

Blondie called her post "Prescription for Art." I think this is perfect. Indulging our creative needs should not be an afterthought but a prescription for mental health and happiness. As Blondie points out in her post, art is good for our bodies and our spirits. We should all make time for it. The product need not be perfect. It's the process that matters.

We can't all make great, or even good art. But perhaps this prescription applies most of all to those of us who would never call ourselves "artists." We can all seek inspiration in the world (and from art of all kinds) to make stuff and make ourselves a little happier.