good things

Time for another one! What would yours be?

In random order, the things that make me happy these days:

Lynn Miles.

Billy Bragg.

Tea.

Thinking about Canadian travel.

Colours.

Massage and reflexology.

My friends and chosen family (and that includes lots of real family).

My sister (because that bears repeating).

Dark humour.

Dog faces.

Tim (for 25 years this month. Over half my life).

My brain (ironically, I know).

Spring.

the latest developments in the brain of Laurie K

I have been planning for ages to return to writing in this space and feeling a bit guilty about it. I've just been really busy with other writing, volunteering, having fun and getting healthy.

Ironically, what brings me back is a return of the cancer in my brain. The letter below is an edited version of one I sent out via email earlier this week. 

I am happy to have this blog. I just wish I had different news to share at this time.

Dear friends and family,

My last MRI revealed two new tumours in my brain. Both are the same area as before - the cerebellum. One is in my inner auditory canal and the other is in the cerebellum tentori (the lining separating the cerebellum from the rest of the brain). In mid-October, I began to have vertigo and an ear ache and sore throat followed later. Once ear infections were ruled out, I wasn't surprised to learn that the tumour that sits on the auditory nerve causes these symptoms.

Surgery is not on the table at this time. I'll be having Cyber Knife radiation to both spots on December 1, 3, 4 and 7. The additional dates (the last two times, I did Cyber Knife in one shot) are because the tumour in the auditory canal (IAC) is sitting on a nerve and very close to other nerves. The radiation oncologist wants to take his time and cause as few side effects as possible. Given that these can affect movement, feeling, hearing and of course the vertigo, I'm all for taking things slowly and with caution.

Tim and I have had two weeks or so to let the news sink in and we are doing OK. We spent the first few days vacillating between sadness, anger and despair (and watched a lot of Netflix) but have been much better since seeing the doctors, knowing we have a plan and that the doctors are very well informed and communicating with each other.

My medical oncologist was also telling us about various possibilities for next steps. There are some really interesting things on the horizon, in terms of crossing the blood brain barrier and viral treatment of cancer. As I said to my medical oncologist, "It's a very exciting time to have brain mets!" 

He laughed.

I am hoping hard  that by the end of 2015 the tumours are zapped to nothing and we don't have to go through this again any time soon.  Here's to a healthy, bike-riding, surgery free and zap free 2016.

I hope this is reasonably clear. Please feel free to ask questions and to talk about this - the boys know and it's not a secret.

With much, much love,

Laurie

The dogs in coats have nothing to do with the blog post, except that they provide distraction from a heavy message. Dogs in coats make me happy.

for tim

In 1991, Tim and I, newly in love, had just moved to Toronto. Very soon after, he left on a pre-planned trip to the West Coast of the US and Canada. When we were re-united three months later (an eternity when you are 24), I had my own home, my own friends, job and way of doing things.

We were still madly in love. We joined up some things but continued to lead our own lives with separate interests and friendships in addition to the ones we hold together. This is why it struck us both as so very funny when, on our wedding night in 1996, after all the madness was over, I got quite drunk on all the left-over free wine (our guests were not big drinkers; my friends and I got pretty plastered).

I remember sitting in the stairs at the Arts and Letters Club, in my boots and party dress, head in my hands and saying to Tim, "You do the thinking for both of us."

We both knew I meant pay the bar-tenders and the venue but to say it on my wedding night, after all that had come before, struck us both as highly amusing.

Flash forward 24 years, through an unbelievable amount of change and trials we could never had imagined. When I awoke from 9 hours of surgery, the very first words out of my mouth were "Where is my husband? I want my husband!" - and I would not shut up until they let him come to me.

With all the drugs in my system, the very first and only thing I wanted was this one man. There will always be so much more to both of us together and on our own but that I would say those words when I woke were pretty damn definitive.

Poor Tim. He's stuck with me.

it's deja vu all over again

I've been struggling to write this post for the last couple of days. Two nights ago, a friend of my son's was saying that he finds it much easier to write when he's writing to someone. My spouse shared that he once had a university prof suggest that he get over writers' block by starting his essay as a letter.

To that end, I wrote an email to my loved ones today and, when it was done, I decided that it was clear enough to share here, as an open letter to anyone who reads this.

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

I saw my neurosurgeon on April 22 and he has decided that brain surgery is my best option right now. It's been scheduled for May 5.

The communication around all of this has been terrible (this is the same MRI that he said "looked better" a short while ago). From what I am able to understand (Tim, feel free to jump in here), Dr S (the neurosurgeon) took the images to a different radiologist who he trusts after feeling that he was getting inconsistent information. The two of them decided that it makes sense to take action.

I now have 3 spots on my brain: the mass on the site of the original tumour, a tiny spot deeper in the cerebellum and a new one, close but not attached to the original site (this is the one that is really of greatest concern). From my reading of the MRI reports, this one is either on or very near the lining of the brain.

On May 5, the surgeon is going to attempt to completely remove all spots and then biopsy them. While there is slightly higher risk of complications this time around, the recovery time will likely be a bit better than last, if all goes well.

The lousy way this has played out means that my fantastic plans for this spring have been scuttled. I'm still trying to figure out how much (no bike trip 3 weeks after brain surgery...) and to figure out how to organize our lives so that things go as smoothly as possible.

The kids know as of last night (didn't want to tell Daniel on his birthday) and they are amazing young men. Truly. And Tim - I actually don't have words - is beyond patient, loving and supportive. This is so hard on these guys but they are very good to me.

My pre-surgery MRI is on April 27. I have treatment April 28 and my pre-op appointment on April 30. If memory serves (and there is much I don't remember about last time, including the entire first season of "The Good Wife" I watched in recovery), I won't find out the time of my surgery on May 5 until the day before.

I think you know everything that I do, now. Please, please forgive the group email. It is so much easier to get this out once. I'm stressed but in a reasonably good place and happy to try and answer questions or just chat.

Thanks and with much love,

Laurie

p.s.: It's actually a nice feeling to need to send out a group email. I have so much support. It's good to remember that.

how much to say and how to say it: the blogger's dilemma

I'm finding my blogging constrained these days by thoughts of how others, particularly my family, are feeling. I'm especially concerned that my children could be reading, if they chose to do so. How could I possibly put my very darkest thoughts here, as well as my most hopeful, happiest, meanest and angriest, knowing that they could read these words and not understand that how I feel in one moment is not how I feel all the time?

Do I protect them or do I just be honest and know that those closest to me have the real me to talk to and reassure with my presence? Does silence actually protect anyone?

It's hard, even in the most banal of times, not to feel self-conscious - something that definitely hampers writing.

I feel a need to write but also a need to be read. I've considered password protection of my posts but that feels like locking people out when I want to be accessible. I don't even have much security on my Facebook profile because I think gives a false sense of security. I prefer to only post to the internet things that I'd be comfortable with the whole world reading. I can write, edit and even delete before posting. I am in control.

Or perhaps not. How can I know who reads and how they are affected? Are my thoughts embarrassing or even wounding to those I love? Months of silence on the blog have not meant that there has been anything wrong, just a lack of inspiration brought on by ennui and the self-imposed imposed limitations that have grown with the years.

My oldest son, who is beautiful, brilliant, funny and talented is a pretty private guy so I don't often write about him here. I have lots I could say but I respect his boundaries and don't share about him without his permission.

My youngest is more outgoing and happy for me to post photos and discuss our adventures. He's almost 12 though, so I know that door could soon be closing.

I've always considered writing about myself and my fears and foibles to be fair game. But perhaps it's not. At any rate, I'm conflicted. We'll see how it all shakes out in the coming weeks and months.

I have kept a journal for years. It's where I purge everything and I seldom feel a need to go back and re-read my words once a notebook is finished. One afternoon this winter, I threw a bunch of these journals into the fire and watched them burn. It felt very cathartic but created an awful lot of ashes. I think I'll just gather up the rest when I'm ready and throw them out with the re-cycling (I'll do it on pick up day, so no one actually has the chance to try and decipher my writing).

This blog, however, is permanent. I do know a woman whose family deleted her blog after she died but that felt really wrong to me. I want my words to live on but hat very thought makes each word weigh more heavily.

bloggers who live with mets and write about that and other things

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.

Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 

Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.

In no particular order:

Katherine O'Brien  I Hate Breast Cancer 
@ihatebreastcanc

Catherine Brunelle Bumpyboobs 
@Bumpyboobs

Anna Craig 
@annamecraig

Lisa Bonchek Adams 
@AdamsLisa

The Sarcastic Boob 
@sarcasticboob

Ann Silberman Breast Cancer? But Doctor...I hate pink! 
@ButDocIHatePink

Jen at Booby and the Beast 
@JCampisano

Carolyn Frayn Art of Breast Cancer 
@CarolynFrayn

Lulu Change Living Life Furiously 
@LulyChange14

Uppity Cancer Patient 
@UppityCancerP

Telling Knots 
@knottellin

Kate Kate Has Cancer
@KateHasCancer

Jill Dancing with Cancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy
@IMBCadvocacy

Susan Rahn, StickIt2Stage4
@StickIt2Stage4

Sarah Illingworth 
@Illingpig

Victory Over BC
@MetaThriving

Phyllis
@Groz_P

Jude Callirgos
@JudeCallirgos

FUBC
@FUBreastCancer

Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight
@nicolejasien

Honorary club member: 

Nancy Stordahl at Nancy's Point
@NancysPoint

Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.

The organizations that don't ignore us:

Metastatic Breast Cancer Network
@MBCNbuzz

Metavivor
@metavivor

Canadian Breast Cancer Network
@cbcn

ReThink Breast Cancer
@ReThinkTweet

This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.

Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).

I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

the best laid plans

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

constant correction

"Balance is a process of constant correction."
-Guy Forsythe, "Balance" from the Freedom to Fail

Terry Arnold (@talkIBC) reminded me of the Guy Forsythe song last night during a weekly Twitter discussion of the Breast Cancer Social Media group (#bcsm) on Twitter. These chats happen every Monday evening but the conversation is ongoing. I often forget about the chats but when I remember (or, more often, am accidentally reminded), I love every moment. When I start to chastise myself for spending too much time online, I am reminded of  how much support I find there - across distance and difference. We "get" each other.

One of the threads last night was about seeking balance, a subject near and dear to the hearts of many of us but especially to those who are recovering from or living with chronic illness. When is it right to push ourselves and when is it best to slow down?

Feisty Blue Gecko shared a post about "Seeking Balance" that deeply resonated with me, as I try work my way through my September to-do list, without forgetting to notice all the good (and not so good) happening around me.

It was a great discussion as always but it wasn't until this afternoon that I took the time to follow the link Terry posted and listen to Guy and some of his band, singing "Balance."

I was reminded that I literally stumbled into the audience listening to Guy at last year's Ottawa Folk Festival, on my way to another stage. I was immediately mesmerized and didn't leave until the concert was over.

It was pouring rain when Guy began what has become one of my favourite songs. As he sang the words from the chorus, "You can't change the world and you can't change the weather, the best you can do is make the most of today", the sun came out. It was a perfect moment as I stood there, acutely aware of my beautiful life.

Tomorrow, my mother is coming for a visit. I need to get to the cancer centre lab to get bloodwork done this week. Thursday is parent-teacher night at both my kids's schools. On Friday, I go to Halifax for a few days (starting with the Advocacy Training, hosted and organized by the Canadian Breast Cancer Network). I get back Monday night and have a surgical procedure to replace my portacath the next morning and Herceptin treatment that afternoon. The day after that, I need to organize the milk orders that have come in at my son's elementary school. That Friday, the home care nurse will come and remove the needle from my new portacath (they leave it in for a few days) and I'll head to Toronto. We'll spend a day getting ready then, I'll head to my friend's cottage in Northern Ontario.

That's just my September.

And that list doesn't even include the banal things from my to-do list that need to get done in between each of these things. Or doing the things that keep me whole, healthy and sane.

Some things just aren't going to get done. Others won't be done as thoroughly as I'd like. I'll try not to think of it as dropping the balls, just allowing them to fall, gently. Someone else can pick them back up or I'll deal with them later.

So much of what's happening in the next little while will be memorable and enjoyable. I need to remember to breathe deeply, look around me and take it all in. I have a feeling there are a few more perfect moments coming. It would be a shame if I missed them because I was too distracted or too worn out to really be there when they happen.




 You can order the Freedom to Fail from Guy Forsythe. I bought it last year at the Folk Festival. It's one of my favourites. I think I'm going to go listen to it now.

ask and ye shall.

Last night, I had dinner with my good friend Sharon, who has twice been treated for breast cancer. She's well now but we got to talking about asking for help during treatment.

We both had teams of people, providing all kinds of support during our health care crises. We were fed, entertained and accompanied to appointments. My kids were distracted and cared for, my dog was walked. My friends even paid to make sure that someone would come and clean my house while I was recovering from surgery.

To me, feeling healthy and strong again means requiring a lot less help. I speak with my oncologist over the phone. I breeze through echocardiograms. I walk or ride my bike to appointments. I even go to my regular Herceptin treatments by myself most of the time.

I feel fine about all this. I like being independent and I don't want to ask people for support when it's really not needed.

But sometimes it is.

On May 2, I have a brain MRI. These are always fraught with anxiety for me. My head is wedged into place and then encased in a small tube. And it's unbelievably noisy. I'm reasonably good at self-soothing and yogic breathing but as I force myself not to mind the physical discomfort, I start to worry about results. What will the radiologist see in my images? What can the technical staff see, as they test is being done?

There is not enough meditation or Ativan in the world to make this a pleasant experience.

Tim has come with me to my last few MRIs but on May 2nd we have a child care conflict. I was contemplating going alone when I was reminded by my conversation at dinner that there was another option: asking for help. 

When I got home, I logged on to Facebook:

Within minutes, I had a friend who offered to go with me and someone who said they'd be backup. And there were so many others who couldn't go but who sent their love and support or said they'd be there with me in spirit.

And they will be.

Note to self: Ask for help, even if you think you don't really need it. You'll be very glad you did.

grounding

This is a treatment week and it's different every time. I get Herceptin over 90 minutes, Demerol to keep me from reacting to the Herceptin and Gravol (Dramamine in the US) to keep me from getting nauseated from the Demerol. Fun times (the actual infusion of Demerol can feel sort of fun. For a while). 

Afterwards, I never know how I'm going to feel. I've had doctors express surprise that I feel lousy after getting Herceptin, yet the nurses do not. I choose to believe that it affects me intensely for the same reason I reacted so strongly - because it's a drug that works for me.

Some rounds are pretty good, the last one was awful and this one has been somewhere in between. I feel worse today than yesterday. I haven't forced myself to exercise and perhaps that's the wrong thing. I did write a lot yesterday and was very productive in a sedentary way. Maybe I overdid it.

I'm always second-guessing myself. Sometimes, it's no fun being in my own head.

At any rate, I am tired and cranky. I've skipped yoga but I will get out of the house to meet a friend for coffee and then take Daniel to drum lessons.

I've been working my way through Julia Cameron's Walking in this World. While it's not as life changing of as my experience of the Artist's Way, there are lots of interesting bits.

Today I had to do a very well-timed exercise. I had to list 10 things that make me feel more grounded. I ended up with 11.

Here they are, in no particular order: 

1. Making lists.

2. Doing something with either of my kids, just for fun.

3. Hanging out with Leslie.

4. Reading a book and writing/talking about it.

5a Knitting.

5b Knitting with Karin and Deb.

6. Folding laundry.

7. Crossing things off my to-do list (see first item).

8. Taking a shower.

9. Journalling.

10. Burying my face in the crook of Tim's neck.

11. Going for a walk.

I feel more grounded already. Blogging must be my number 12.

I had the privilege of being an early reader of this book and it's fantastic. Even if you don't live with rheumatoid arthritis (RA) there is lots of advice in this book about pain management and living with a chronic illness. Lene is a friend of mine (in the interest of full disclosure). She's funny, smart, compassionate and wise and all of this comes through in this book. It's a must read for anyone who knows anyone living with a chronic illness but an especially important book for those newly diagnosed with RA.

Your Life with Rheumatoid Arthritis can be purchased as an ebook from Amazon.com, Amazon.ca and Kobo books for a very reasonable price. Go buy yours now.

it's not easy be(com)ing green

"You know what would make this kale smoothie better? Get rid of the kale."

-Tim, March 9, 2013

"I've added flax to my green smoothie. Now, all I need is a protein."

"Like a side of steak?"

-conversation between Tim and me, March 10, 2013*

Really unappealing but tasty, I swear.

A couple of weeks ago, I wrote about meeting with Heather, a cancer coach at the new survivorship centre. Her background is as a nutritionist and I have chosen to focus on that topic with her.

She's impressed on me the importance of making small SMART goals. I've chosen to focus on getting at least 5 servings of fruits and vegetables every day for the next month (after which I will buy myself a small present, as directed by Heather).  I was sure it would be laughably easy.

It is not.

Heather also gave me some recipes and encouraged me to try them as a way of increasing my consumption of fruit and vegetables. I tried a version of one yesterday with kale, mango and mixed berries. It was delicious but the blender didn't do a great job with the kale, leaving chunks of it to get stuck between our teeth (see first quote from Tim, above).

After a wonderful conversation on Facebook (it seems that lots of people find the topic of making green smoothies to be of passionate interest), I decided to put the water in first and blend the kale before adding the fruit. A video on "How Your Blender Uses Physics to Make a Smoothie" posted by my friend Hélène, was fascinating and very helpful.

Today, I put water and the kale (more than yesterday) in first. This helped my blender to be much more effective. I added fruit gradually, until the bitterness of the kale was masked by the berries and mango. I also added a tablespoon of flax seed.

The result wasn't pretty but it did taste pretty good.

I also found out yesterday that my friends have very strong feelings about their smoothie-making appliances. It made me covet a new appliance but Tim has rightly suggested that I should wait until I have a proven commitment to smoothie-making.

I think I'll ask for a Nutribullet for Mothers' Day. Andrea and others rave about it and it is the cheapest of the lot. It's bound to be less labour intensive than what I'm currently doing (I have to keep removing the lid and stuffing the unblended bits down). Also, there probably shouldn't be a burning smell when I'm done blending.

I'd love to hear all your adventures and advice about smoothie making. Recipe advice would also be welcome, along with other suggestions (what do you use for protein, besides a side of steak?). Andrea shared a link to the Almost Raw Vegan, who has 50 recipes that look pretty good to me.

*I've just figured out that flax seed is a great source of protein. See how little I know?

it's all official now

Dear Everyone,

I just got the call. I need to be at the hospital by 6:15 tomorrow morning. My surgery is at 8:00am until 3:00pm (gulp). I am my surgeon's only patient tomorrow (the person who called said this like it was unusual). I'm happy to know that I will have his full attention.

I am likely to be on Twitter until they take away my phone. Tim will update as he has info. You don't have to be on Twitter to read updates. You just need to click on the links below:

Laurie's Twitter feed.

Tim's Twitter feed.

I'll be in the hospital for a few days. Once I'm out of post-op and in a room, I'll have wifi access and Tim will bring me my phone and computer. 

If you're in Ottawa and thinking of coming to visit, let me know. Visiting hours are between 3:00 and 8:00pm but I'm only allowed two people at a time, so message me before coming.

Thanks so much for all your messages of support. Each time someone reaches out to let me know I'm in their thoughts, it lifts my spirits.

I am vacillating between a surreal sort of calm and waves of anxiety. I feel like I should be getting ready but I think, for so many reasons, that's hopeless.

I, however, am filled with hope. I am planning my life on the assumption that the tumour will be safely and completely removed with no complications. 

See you on the other side.

love,

Laurie

call me George-Michael

We've posted a short clip on Frivolity. In this one Andrea and I talk about overcoming our  obstacles, trying new things, taking bold steps and learning how to have fun.

There is also an Arrested Development analogy or two.

watch and listen: i get tattoed

The most recent episode of "Get Frivolous" is up over at Frivolity, the site of my new project with Andrea Ross.

This is the one in which I get my new tattoo. You can listen in before, during and after. Watch the video (Andrea put together a slide-show with photos taken by my friend Helen Berry) and/or listen to the audio on it's own.

It takes less than twenty minutes and it's good fun - if I do say so myself!

embracing Frivolity (a new project)

I'm so happy to announce the birth of the Frivolity project! You can find us over at getfrivolous.com. 

Here's an excerpt of my perspective on  "Why Frivolity?"

A couple of years ago someone wrote a review of my book that really pissed me off. The reviewer took me to task for seeking and finding pleasure in things irrelevant and frivolous (I’m shamelessly paraphrasing here). I threw the review across the room, where it sat for several weeks (Those of you who know me will will understand that this is literally true. Housekeeping is not one of my strengths). 

Then I got to thinking about why it’s actually OK to be caught seeking fun and happiness. We all have lists of things we’d like to do “some day”. We write them down in notebooks, scribble them on napkins (or is that only in the movies?) or keep them locked away inside our brains. That’s certainly what I did – until I was faced with a life threatening illness and was suddenly very motivated to make “some day” happen “right now.” 

From spending the day at the art gallery to writing a draft of a novel to getting my first tattoo, I began to ask myself “Why not now?” 

This new blog and podcast are all about finding ways that Andrea (my co-conspirator) and I, and any of you who want to play along, can embrace the frivolous, take risks and have fun. In my opinion, the world could use a little more frivolity.

Come listen, watch, look, read and share. Send us your ideas, responses, images and stories. Join us in our Frivolity!

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

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.