beating the blood brain barrier

Ouch! My writing muscle hurts! I realized this week that I have not blogged since March 23. I have so much I want to say that I don't know where to start, so it feels a little overwhelming. 

About 10 days ago, I had an Ommaya Reservoir, installed in my brain. Compared to my other brain surgeries it was a walk in the park but I'm still dealing with all kinds of fallout from the anesthetic, pain and healing. I had my staples out yesterday, though, so the end of the tunnel must be in sight (although my head hurts as I type this).

You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.

The good news is that we have decided to try something that is still pretty experimental: injecting Herceptin (also called trastuzumab, to which I have been a super responder. I have been on the drug for 9.5 years and since since going into remission, have no detectable cancer below the neck) directly into my brain, thus getting past the issue of the blood-brain barrier. This is known as Intrathecal (or IT) Herceptin. There is currently a trial happening in Montreal (and a resident who works on it was just in Ottawa, working with my oncologist) and there are stories of people going through the process in the Western US. I will be the first in Ottawa. I'm told that everyone in the hospital is very excited.

By artwork by Patrick J. Lynch, Kuebi = Armin Kübelbeck - own work, the brain is taken from Image:Skull_and_brain_sagittal.svg made by Patrick L. Lynch. Made with InkScape., Public Domain,
https://commons.wikimedia.org/w/index.php?curid=6066950

IT trastuzumab was effective in targeting extramedullary (LM) metastases. This resulted in the prolonged survival of our patient for 46 months, compared to a median life expectancy of 3–4 months for breast cancer patients following the diagnosis of LM without treatment [18]. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (from: "Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine)

The decision to go this route is the first time I have felt hopeful in a while. My oncologist is nervous about side effects and finding the right dose. I had a very intense reaction to Herceptin when I started and because this kind of treament is still experimental there are potentially some very serious side effects (even death). There is also little clarity as to what dose would be both safe and effective.

Anecdotally, and in trials in Montreal (and elsewhere) the response has been very positive, over all. I'm glad my oncologist has been convinced to give it a go. Additionally, my latest MRI has revealed that the three tumours in the brain lining are all stable, so we are feeling less urgency. This is also good news, although I am keen to get started.

The bubble wrap is called a "Bear Hugger" and it's warm and lovely.
The drugs probably helped with that feeling.

others' eloquent voices

I was actually doing much better between when I blogged last time and when I went in for CyberKnife radiation last Thursday. I was walking and eating (and had even been out for dinner once and gone to book club). I was still needing to rest a lot but I could see the improvement in every day. And that was heartening.

CyberKnife was a major setback. I remember that it was last time, too (so much so that I never really wrote about it - just wanted to move on). That's just how it goes for me, I guess. I had brain swelling, headache, nausea, loss of balance, fatigue (yet little sleep) and a very odd taste in my mouth.I still do. But the light is at the end of the tunnel (I think it took a week last time and it was been 4 days) and I will soon be able to concentrate - and to live again. I know it.

Meanwhile, yesterday was "National Cancer Survivor's Day" in the US (and supposedly around the world, including in Canada). I missed it but lots of people with mets and who post about mets did. Here are three good ones. These are particularly eloquent. Something to think about.

National Cancer Survivors Day® & Why I’m Just Not that Into It (by Nancy Stordahl at Nancy's Point) 

Not a Survivor (by the Cancer Curmudgoen at The Cult of Perfect Motherhood)

The Trouble with "Survivor" and the Lack of Boundaries (by Susanne at Metathriving: the blog) 

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.

just under the wire

It's the very last day of "breast cancer awareness" month and I have a post up at Mom 2.0 Summit, "Pinkwashing won't cure breast cancer":

"I care about bringing an end to breast cancer. As someone who has lived with the illness since first being diagnosed in 2006, I care very much. However, I don’t think buying fried chicken in a pink bucket or a pink screwdriver is going to change very much at all."

I also wrote a post for BlogHer for Metastatic Breast CancerAwareness Day, "I'm sick of cancer but it won't be a good day when my treatment stops":

“Women with metastatic breast cancer never really fit in with others in the breast cancer community. To those who finish treatment, embrace the word “survivor," talk about “winning their battle" and never looking back, we represent the worst that can happen. Who wouldn't want to believe that if you stay strong through treatment, stay positive and do everything right, you will get to leave cancer behind?”

I hate pink ribbons and pinktober for a whole host of reasons that I realize I can now rattle off in a two minute rant. Ask me some time. It could be my new party trick.

happy new year!

Today is the first day of school in these parts. We all had mixed feelings about it. Summer went by way too fast for me and I think we all revelled in the things we did (a week at the cottage, an overnight in Montreal, a few days in New York) and the things we didn't (lots of sleeping in, watching movies, reading books and hanging out). I'm very conscious these days of how quickly time is passing.

Last year, I wrote a post called "new beginnings" and here I am again. For me (and I suspect for many people), the first day of school will always mark the new year, way more than that first day in January.

Daniel is in Grade 6.

Sacha is in Grade 11.

This is obviously not a first day of school photo. But that was never going to happen.

Summer is over.

It's time to get begin the new year.

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.

how far i've come

On Tuesday night, I had the privilege to participate in Blog Out Loud Ottawa. This was my third time attending and my first as a reader. I was very nervous.

But it was a wonderful experience. Tim and Sacha (my teenage son) attended as well as several supportive friends (I hope they realize how buoyed I was by their presence). My reading went very well. The crowd was so supportive that they made it easy. It certainly sounded better to me than it ever did in practice.

If you're a blogger and you ever get the chance to read in front of a supportive group - do it!

I read a post called "learning to breathe'" that resonated with a lot of people when I first posted it. It was written last November, a year after my brain surgery. As I said at the beginning of my reading, "...each blog post is a snapshot of my life at the time of writing. If I were to take a snapshot today, it would show how far I've come."

I am more open.

I am more resilient.

I am more willing to face my anxiety.

I am more hopeful.

I am less afraid.

It's a really good feeling to aware of this progress. 

My blogging over the last year has been pretty sporadic. And I'm not sure what the future holds. But I know I want to keep writing. And sharing.

I am so grateful to BOLO organizer Lynn Jatania, to Ottawa's blogging community and to the Writers Festival for the renewed inspiration.

Stay tuned. I'm pretty sure more change lies ahead.

Upate: BOLO has posted links to all the posts from Tuesday night. And look! That's me on stage in my red dress.

it's tonight!

out loud

I have some good but also personally nerve-wracking news. I'm going to be reading next week at Blog Out Loud. That means I'm going to be reading a post I wrote on this blog OUT LOUD. In front of people.

What was I thinking?

Actually, I am very proud of myself for submitting a post to this annual event and prouder still for having been chosen (although this pride is mixed liberally with "why me?"). Blog Out Loud is organized by the fabulous Lynn Jatania and this year the event will be part of Ottawa Writers Festival. So after next Tuesday, I get to say that I've read at Writers Fest. How cool is that?

Here are the details:

What: 11 bloggers read their favourite post of the past year

Who: Anyone who likes to hear good stories or see amazing images is invited to attend

When: April 29, 2014, 6:30 p.m. SHARP
Where: Knox Presbyterian Church, 120 Lisgar Street, Ottawa.

There is no charge to attend.

I'd love to tell you which post I'll be reading but I've been asked to make it a surprise. You'll have to come to Blog Out Loud to find out.

i want more

We've all been sick, these last couple of weeks. It seems that as soon as one virus leaves, another sweeps through. Or perhaps it's all the same bug. At the moment, I have a sinus infection that used to be a cold and my 10 year old has a fever that used to be an ear infection. We've been through a lot of facial tissue (my father worked for a subsidiary of Scott when I was a child. I try hard not to call them Kleenex).

I think that ill health is likely why the only resolution I've come up with is to check all our pockets before loading the washing machine. Raging head colds don't lend themselves to introspection.

But I have been thinking a lot about the kind of life I'd like to be leading and of the kind of change that's within my control. What it comes down to is that I want more. Not more stuff or more obligation, pressure, failure or shame. I want more love, more play, more laughter, music and creativity.

The tricky part is getting there. There are things I need to do to have more of what's good but I have to make sure I don't fall prey to what's bad. Exercise is great for me but instead of beating myself up for not racking up the minutes I've set as an arbitrary goal, I can go for a walk. Writing feeds my soul. Except when I'm stuck. Then, I can pick up my journal. Or my knitting. And if I get sucked down the rabbit hole that is the internet, well that's OK too. I can always do things differently tomorrow.

I think I'm trying to say that there is a corrollary to "I want more" and that's "Be nice to yourself." So I guess those are my resolutions for 2014. It hope it still makes sense when the cold dope wears off.




It was only after I'd drafted this post that I remembered that Lynn Miles said it before me and best.

This song is from the album "Downpour." I've bought it 5 times so far and you should too.

housekeeping

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

new beginnings

September always feels like the beginning and I'm ready for a fresh start.

Taking the summer off has left me ready to write again. I have much to say and many stories to share.

In many ways, this blog is my anchor, holding me in place long enough to name my emotions, share my experiences and examine my actions. I'm feeling kind of "all over the place" these days. I think an anchor may be just what I need.

It's good to be back.

Daniel is ready for the first day of school.

a guest at Nancy's Point

It's somewhat fitting that while I'm on vacation, I'm a guest on someone else's blog!

"You have no control over the cards you’re dealt; but there is strategy, experience and skill that goes into playing the game.

I’m a lousy card player."

Please visit Nancy's Point, to read more and to check out this excellent blog. Nancy is incredibly generous in her support of other writers as well as being a thoughtful, interesting blogger and author of "Getting Past the Fear: a guide to help you mentally prepare for chemotherapy."

I'm also giving away a copy of my book!

what it feels like to learn you have a brain tumour, if you are me

I was going through some writing from last fall and I found this. I wrote it, in response to a prompt - "Write about falling" - for an online writing class I was taking. Reading this brings me right back to how I felt when I heard the news that the cancer had metastasized to my brain. I share it now because I think it might resonate with anyone who's every been blind-sided with unwelcome news.

“Your CT scans were fine.”

You breathe a sigh of relief.

“But the MRI revealed a spot on your brain.”

And with those words you start falling. You feel the floor crumble beneath you and the sounds of talking fade as you slip away. You're vaguely aware of you own voice, sounding oddly calm, as the faces in the room grow blurry.

All that was solid rushes by and your lungs gasp for air and yet you move more slowly than you would have thought possible. The room, your spouse, the spot of egg on your doctor's tie, the clock on the wall with the time you had noted (you'd been annoyed that your appointment was starting twenty minutes late) recede into the tiniest of specks and the darkness engulfs you.

Falling feels scary and good at the same time. You are panicked but somehow you know that to fall away from your present is as good an escape as any.

And then a voice cuts through. One you know and love. A voice that has brought you back to reality so many times in the past.

And you land, far below where you started, with a thud.

You pick yourself up, reach back up towards those fluorescent lights you've always hated. And slowly, deliberately, reluctantly, you haul yourself back and to sit in the chair on which you started. You don't know what was said in your absence. No one seems to have noticed you were gone.

You find out later that your head nodded, your lips moved and words came out while you were falling. An appointment was booked, reassurances were made and a promise that a plan would soon be in place.

You remember nothing after the words, “spot on your brain.”

It doesn't matter. You've been through something like this before. Someone will fill you in on what you missed while you were falling.

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.

healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

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!

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.

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.