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.

up to something

I have a project.

It's taking some planning and a fair bit of work. It won't change the world but it will make my world  a more fun, brighter place. At least I think so. It may even inspire a few people.

I'm not working alone but I'm not sure how many of us there will be. It's something I've been wanting to do for years but an awesome friend proposed a date and an action plan. We're being a little bit subversive, a little bit creative, a little bit brave and deliberately frivolous.

I think I need more fun in my life. I need to do some things just because they make me happy, not aiming for perfection, not trying to be "productive" and not with any particular purpose in mind. We're just going to put our heads together, set our hands to work, make a leap into action and then sit back and see what happens.

I'm having fun.

updating my words and myself

I've been thinking a fair bit about my last two posts.

First thing:

After writing my post about the lack of privacy in the chemo unit at the cancer centre, I was encouraged by several readers to follow my words with some action. I went to the Ottawa Hospital website and filled in the feedback form with a brief comment and a link to my post.

On Tuesday (the first business day after the long week end), I got a phone call from a "patient advocate" at the hospital. She was calling to let me know that they'd received my message and to ask permission to look into my medical files in order to determine with whom they should follow up (I was so stunned by this phone call that that it didn't occur to me until just now that they didn't need my medical info; they already knew that I was writing about the chemo unit and I could have just told them the date and time of my treatment. The irony in my  readily agreeing to this invasion of privacy, so they could follow up on a post about privacy is not lost on me). 

I was impressed to get the call and I have since been wondering about all the times that far more egregious things have happened at the hospital (as well as some equally wonderful things) and how I could have acted on them quite easily. On the other hand, no promise has been made to actually do anything or even to report back to me. The advocate said that I "may notice an improvement" the next time I go for treatment. And if I don't, she said I should fill out the feedback form again.

Second thing:

My last post was the first one I have ever considered taking down after publishing. I don't actually think that I'm a bad friend, generally speaking. I just have days when I tend to dwell on my regrets. In writing the post, I thought that by naming this shame, I might be able to let go of it a little.

I have a tendency to see the world in terms of right and wrong, good and bad (at the risk of sounding totally flaky, I am a textbook 1 on the enneagram scale). This can make me a little (ahem) judgemental  One of the things I like about myself is that, as I have aged and lived, I have also mellowed and come to understand that, a lot of the time, there are very many shades of grey. However, I still tend to be hardest on myself.

One of the things I'm working on is learning to let things go, forgive and move on, without repeating the same mistakes. Progress is not always linear but without a doubt, I am progressing.

i've been a bad friend

I've been brooding a little bit lately over all the ways I have been a bad friend since my breast cancer diagnosis.

I know I have and can still be a good friend much of the time but I've been thinking of how good people have been to me and I feel like I've fallen short in the reciprocation department.

I'm not being too hard on myself for cocooning during the worst of treatment. But there have been lots of good weeks during remission. I have missed so many important events in friends' lives - the births of children, loss of loved ones and serious illness. And now I don't know how to make up for that.

Friends, acquaintances and co-workers have sent me on trips, bought me presents and food, taken me out and sent me beautiful messages of support. I've been better lately at being the kind of person who does these things for others but I think, for longer than I cared to admit, I was too busy staring into my own navel - at least some of the time.

I'm in a pretty good space these days. Today, however, I am especially aware of regret.

it matters

Last Tuesday was treatment day. After a longer wait than usual (40 minutes -  I don't think I've ever waited that long in more than 6 years of treatment), my name was called and I was asked to go to Pod 3 (this sci-fi evoking nomenclature amuses me greatly, given that the world of cancer care is already pretty bizarre).

Despite my long wait, I noticed that Pods 1 and 2 were completely empty. Pod 3, however, was a different story. All 6 spots were occupied and there appeared to be only two nurses helping us all. 

Have you seen 50-50? I loved that film, and by and large, I found it to be a pretty accurate reflection of my own experience. One thing did raise an eyebrow though - the fact that they seated the patients in the treatment room so close together that their knees could touch. I understand that this likely fiction helped to advance the story but in real life I would never enjoy being so 'up close and personal' with my fellow patients.

For a while, things were almost that bad at the old cancer centre until the construction of the new building began. After that, the din was excruciating but it did block out my neighbours' reports to the nurses on the frequency of their bowel movements.

The move to the new cancer centre has been a huge improvement. I love the light and the air in the new building but most of all, I love the space. During my last couple of visits, though, it has felt like there is a little less space to go around. 

On Tuesday, I cringed as I heard the woman in the bed beside me being grilled about her emotional, physical and financial situation by a community care nurse. I tried to concentrate on my book while the woman across from me was informed that she would need a transfusion. I was very relieved when my own interactions with the nurse were over and I could plug in my ipod and let The Flying Bulger Klezmer Band drown out the voises around me.

I'm a fairly stoic cancer patient and it didn't really occur to me to complain. The nurses were lovely and patient as usual, and they were definitely doing their best to keep on top of everyone's needs. I didn't want to give them a hard time because I was annoyed and embarassed.

But it occurred to me later that these kinds of conditions are also unsafe and unhealthy. I, for one, am extremely reluctant to talk about the intimate changes to my body that are a side effect of treatment, so I can't ask how to mitigate them. My conditioned response in these circumstances is almost always to say "fine!" when asked how I'm doing. These days, that's pretty much the truth but that hasn't always be the case. There was a time, on a quiet treatment day about a year ago that I confided in a nurse that I'd been feeling low. She told me about the counsellors at the psycho-social oncology centre and asked permission to get someone to call me. A few sessions later, I was feeling much better.

I appreciate that I am getting cutting edge treatment and I know that's why I'm still alive. That's why I was initially reluctant to make a fuss about what seem to be little indignities.

But dignity matters. And how we feel as patients has a direct effect on our health. It's not petty or selfish to believe that there should be enough nurses working the floor so that patients don't have to be clustered together.

Maybe I should write someone a letter. Or maybe just a short note and a link to this blog post.

sesame challenged

My younger son was a diagnosed with a bunch of food allergies when he was very young. He's outgrown some of these (eggs, milk) and some seem to be around for the long haul (peanuts and tree nuts). 

Among the most insidious of these is sesame. It was the first allergy we suspected and has always been the one we find the most frustrating. It's in everything - try reading labels on bread products for a few days and you'll see what I mean.

Last year, we were offered the opportunity to do a blood test that can determine the degree of reaction to some common allergens. Out of a possible 100, Daniel's response to peanuts was as high as could be measured (this allergy is not going anywhere any time soon). His sesame reaction was 0.84. That's barely a reaction at all. When Daniel had no reaction to this year's sesame skin test, the doctor suggested a sesame challenge.

This, as I remember it, was our experience:

Sunday:

2:00pm: Tim goes out to buy Sesame Snaps.

3:00pm: Tim tracks down Sesame Snaps, discovers that they "may contain peanuts."

4:00pm Tim makes own version of snaps, with sesame seeds, sugar, ginger and lemon.

10:00pm-2:00am I have insomnia, partly due to sesame challenge. This may also be due the fact that I discover my free games of Chuzzle were re-newed when we reformatted my computer.

Monday:

9:00am: Daniel and I arrive at the allergists office.

9:10am: The doctor explains to us how the day is going to unfold.

9:12am: The nurse is blown away by our home made sesame snaps. Apparently most folks just bring in seeds.

9:20am: Daniel's arm is scratched with a bit of sesame. There's a bit of redness (which might be from being scratched but nothing more). Daniel says that it's itchy but remarks that "it might be psychosomatic."

9:25am: The doctor gives us the go ahead to continue.

9:45am: Daniel eats a bit of sesame snap.

9:50am He insists that his lips and tongue are itchy and swollen. I suspect anxiety (we have never been helicopter parents but I can only imagine how he must feel after practically a life-time of hearing the message - from many directions - that a food allergy can KILL you). The nurse sees no evidence of a reaction.

9:51-9:59: I attempt to distract Daniel with hang-man, offer him lunch out and cupcakes as a reward if he sticks it out.

10:00am: The doctor examines Daniel and sees no evidence of a reaction. Daniel is still anxious. The doc holds up a mirror so Daniel can tell that he looks fine. He soberly informs my eight year old that he can walk away now "but you will have to continue to abstain from eating sesame."

10:05am: I tell Daniel that he can have the whole day off from school.

10:06am: Tim drops off Daniel's DS.

10:10am-12:00pm: Testing resumes. Ever larger amounts of sesame are consumed without hesitation or reaction.The last couple of times, Daniel barely looks up from his Pokemon game.

12:00pm: We are dismissed, with one fewer food allergy on Daniel's list. The doctor (who remarks that Daniel is "a different kid" now that the test is over) instructs Daniel to eat lots of sesame in the next little while.

12:30pm: We celebrate!

Anyone know a good falafel recipe?

re-emerging

I don't know whether it's the unseasonably warm and sunny weather (It's about time I noticed that I get depressed every winter and recover every spring), a recent change of scenery or just the passage of time but I feel myself re-engaging with the world.

Shortly after writing my last post, I decided to "give up" on forcing myself to write. I was spending tons of time staring at the blank screen or coming up with creative ways to avoid writing - and feeling pretty miserable about it. What I was doing wasn't working and I had to make a change. So I decided to walk away.

But lately my heart beats a little faster when I think about putting pen to paper and fingers to keyboard. The creative synapses are buzzing and I have lots of ideas for new projects and a whole new approach to how I go about doing them.

It feels good.

lost my mojo

Mid-winter blues.

Bored.

No new ideas ("said it all before" syndrome).

Too much loss.

Whatever the reason, I have not felt much like blogging (or doing any writing) lately. 

I couldn't even muster up the energy to blog about the recent Komen debacle (although I took it all in with great interest).

And I can barely bring myself to think about Rachel (a scathingly brilliant and funny anti-pinkwashing activist and kindred spirit) or Susan (an equally brilliant leader, founder of Mothers With Cancer and mother of two young boys) without becoming undone. They deserve the kind of tributes others have written but I can only say who devastated I am that cancer has taken two more wonderful women.

So, I've been taking a break. 

And fallen out of the habit.

I think I might be ready to come back soon. Or to get back to writing down some thoughts.

And spring will come soon too.

Meanwhile, please know that all my latest tests have been gloriously normal. I'm doing OK. I just need to get past this dry spell, so I can return to writing with joy and enthusiasm.

3 truths

No one can understand hot flashes unless they have experienced one.


It is so much easier to appreciate the beauty of one's own community when viewed through a visitor's eyes.


This is the definition of  good friends: You don't think twice about letting your kid go to their place for dinner wearing pajamas. And when you get there you discover that their kid is still in pajamas too!

photo: M. Slavitch

and the winner is...

Nancy from Nancy's Point! I'll be sending her a copy of Not Done Yet early next week.


Thanks so much to everyone who entered.


I'm hoping to have an ebook version of my book out soon. This will make it so much easier to send out (and no more shipping costs!)

not done yet: a giveaway

I'm feeling completely uninspired on the  blogging front, so I've decided to run my first ever contest. 


Would you like to win a copy of my book, Not Done Yet: Living Through Breast Cancer? To enter, just tell me why you'd like to have the book (it can be serious or funny) in the comments section and I'll pick a winner at random, on Friday, January 27th. Contest closes Thursday, January 26th at midnight.


There are only a few unsold copies left, so get one while you can.


In other news, I'm reliably informed that my publisher is planning on re-releasing Not Done Yet as an ebook. No more shipping costs!

Pink Ribbons Inc.

3 tips

I've been asked by BreastCancerAnswers.com to come up with three tips I'd like to share about going through breast cancer treatment. This poses an interesting challenge. I had to ask myself, "Out of all the good advice I've received and doled out, what three things have stayed with me? Living, as I have, in cancer treatment for 6 years, what is most important."


This is what I came up with:


1. Don't be too hard on  yourself and don't compare yourself to anyone else (why yes, this is one tip - the two statements go together, OK?). Just as every cancer is different, treatments vary widely and so do our responses. Just because that you've been told that Jane worked full time and ran 5k every day of treatment doesn't mean that you ought to be doing these things. And conversely, you don't have to become a shut in just because Jane chose to stay in bed for weeks at a time. Who knows? Jane's choices may have been made because of what other people told her she should be doing. Do what's right for you.


2. When in doubt, bring a friend. People like to be asked to do specific things to help friends and family going through treatment. Don't be afraid to ask for company. Some of the meds I take leave me so wobbly I couldn't make it home without assistance. But even if I feel fine, I've been very happy to have a friend with me to provide a distraction during treatment or be a second pair of ears during appointments.


3. Live in the moment. We all want and hope to put treatment behind us. It really helps me, though, to take a look around and see the things that are good in my life right now. This doesn't come easily to me. I'm someone who lived much of my life looking ahead. I'm working on identifying those things in my life that give me great joy - and then savouring them.


I think that's it. If you've been through cancer treatment, what three tips would you share?

makes me happy

As a way to ease myself out of my winter ennui, my therapist suggested I do some journalling about the things that make me happy. Some of those things are probably evident to anyone who knows me even a little:


Hanging out with my kids.


Laughing with my sweetie.


Watching my dog run in the snow.


Riding my bike.


Reading a good book.


Being in a yarn store with money to burn.




But when I dug a little deeper, I came up with some things that are a little less obvious:


The moments of real connection that can pass between friends and strangers.


Having a good idea.


Eating a healthy, tasty meal I've made myself.


Clicking the "Publish" button on a good blog post.


Getting positive feedback about my writing, especially from other writers.


Looking forward to a trip, whether near or far.


Texting with my BFF.


And, perhaps not surprisingly, it turns out that writing about what makes me happy...makes me happy.

if you can't beat it, sit in it

if it's not on a list, then it doesn't exist

If I have any latent OCD going it, the condition manifests itself in the form of making lists. My name is Laurie and I am a compulsive list maker.

I have to-do lists (of course).

I keep the lists of the books I read (58 in 2011), how many come from the library (40 last year) and how many were by the same author (Michael Connolly was the big winner in 2011. I read 8 of his books).

I also track how much exercise I get (only 130 minutes so far this week. I got off to a slow start) and how many minutes I spend cleaning the house (it's a lot more than you'd think, if you ever saw my place).

I track how many minutes I spend writing and how much time I spend online. I track my weigh and - since January 1st- the number of calories I'm consuming.

It's an addiction. Writing lists and keeping track of things soothes me the in the same way that a piece of fudge can take the edge of a bad day. As with the fudge, I'm not entirely convinced that it's helpful. But I have no intention of stopping. 

In the years since I stopped working at a paid job, I think the lists provide the illusion of the structure that I miss terribly. Sometimes, when my life is feeling out of control, just making a few lists can make me feel calmer. 

As long as the lists don't get too long, or there aren't too many of them, I don't think there a bad thing. The trick is not to let my self-created lists oppress me into paralysis. Or become so time consuming that keeping on top of my lists takes up my whole day.

Maybe I should make a list of all my lists, just to make sure there aren't too many.

Or maybe not.

2012: ditching the Guilt

What Catholic girl (former or otherwise) doesn't learn to feel guilty at a very young age? I was always a bit of an overachiever. I'm good at Guilt.


I feel guilty that I have No Evidence of Disease when other wonderful women have died.


I feel guilty that I'm not working.


I feel guilty that I have insurance.


I feel guilty for being alive.


And, with every clean scan, every month that I continue in treatment that does not include chemotherapy, the guilt just gets worse.


It's not very constructive.


I need to figure out how to free myself from the Guilt. It distorts my perception of myself and others like a greasy hand-print on the lenses of my glasses. I have to figure out who I am and what I want, without having to squint or interpret what's on the other side of the smudges.


It won't be easy. And it may take me more than a year. But that's what I'm working on in 2012.

in other news

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

not imaginary

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.


S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.


S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.


We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.


Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.


I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.


Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.


But, right now, my heart is aching.

Judy

I'm sure she did not "go gently into that good night." 


Judy was a fighter, a woman whose Facebook page stated "I love my life." And that was life centered around her family and friends, especially her 10 year old son and her husband.


I first met Judy (and I do feel like I knew her, even though we never met in person) when 20 or so women were brought together by Susan to form the group blog, Mothers With Cancer. It was clear from the outset that Judy  would become a particular friend.


She had a passionate sense of social justice, a dark sense of humour and a straightforward manner that endeared her to me immediately. Like me, she loathed the pinkwashing that takes place every October. We even both had dogs who were considered part of the family.


Judy never stopped being angry about cancer. She railed against the unfairness of a world that afflicts so many of us with this evil disease.


At the same time, she never stopped appreciating the beauty in the world around her - in her environment, at work and in her family and friends. She never stopped finding things about which to laugh.


It's because of Judy that I applied for Little Pink Houses. I know that her family's week with the organization was a glorious experience (and so was mine). We often said how great it would be to meet up in person. Jeanine from Pink Houses did meet both of us and told me she is confident that we would have liked each other as much in person as we did online.


Judy, my friend, I miss you already. My heart goes out to everyone who loves you, especially Nate and Frank. Many, many, many people mourn your loss and celebrate your life.

a message in my library book

Deanna: a tribute

Brilliant.


Funny.


Committed.


Accomplished.


Artistic.


Strong.


Insightful.


Perceptive.


Inclusive.


Accepting.


Activist.


Loving mother, daughter, sister, friend.


I struggle for the words to write you the tribute you deserve. You are loved, admired and missed by so many.


My heart goes out to your family. I will hold you in my heart forever and continue to be inspired by you every day.


http://deeupdates.blogspot.com/

re-charging

love

photo: Mary Anne Register Folckomer