winners!

The random number generator has spoken and Shari and Jo will get copies of "Getting Past the Fear. A Guide to Help you Mentally Prepare for Chemotherapy." I just need your contact info! You can send me an email by clicking on the photo of my book (Not Done Yet) in the right sidebar. Congratulations!

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.

book review: Getting Past the Fear. A Guide to Help You Mentally Prepare for Chemotherapy

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:

"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."

If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

not just about breast cancer

Today's post is a guest post from the Mesothelioma Cancer Alliance. This is the first guest post ever on this blog but I wanted to share this issue and felt it would be best if someone from MCA explained the issue in their own words.

Here are some facts provided by Cameron Von St. James, whose wife Heather is a mesothelioma survivor. Note that while Cameron is in the US and writes about that country, asbestos is not banned in Canada, either (Update: This is the June 16 editorial from the Globe and Mail: "Ottawa's sunny outlook on asbestos is out of step with the facts."). In fact, Canada's Mesothelioma Center says our country's "mesothelioma cancer rate is now one of the highest in the world."

Have you ever heard of mesothelioma? Most people have no idea how serious this disease can be unless they’ve been personally affected or have seen the never ending commercials. Mesothelioma is an aggressive form of cancer and unfortunately, the only way to develop this cancer is exposure to asbestos. Sadly, there is no safe level of exposure to asbestos, so any individual who has been exposed has a high risk for developing mesothelioma. 

There are many eye-opening facts about this disease such as:

•    “Asbestos” means inextinguishable in Greek.

•    Inhaled or ingested broken asbestos fibers may cause an inflammation of internal tissue and disrupt organ function, which leads to the development of mesothelioma. 

•    Asbestos was used extensively in the mid 1900s and is still not banned in the United States today. 30 million pounds of asbestos are still used each year.

•    Symptoms usually don’t show up for 20 to 60 years after you’ve been exposed to asbestos.

•    Once diagnosed, mesothelioma patients have many options for treatment. Conventional treatment options for mesothelioma include surgery, radiation and chemotherapy.

The Mesothelioma Cancer Alliance has dedicated a significant amount of time in making their site the best resource for patients, families, and individuals who are interested in learning more about the disease. Their mission is to spread awareness in hopes they can prevent this from happening to another family.

Update, June 19: The Globe and Mail "Debate" section has a new article, 

Asbestos exposure: We’re just at the beginning of a health crisis and a longer piece in the Report on Business, called "No Safe Use" .It's a scathing indictment of the ongoing refusal of the Canadian government to even acknowledge the problem, let alone take measures to protect it's people. 

health care is an election issue

I heard on the radio this morning that health care has not been a key issue during this provincial election. I disagree. Maybe the media hasn't picked it up, but health care has been very much on the radar for several groups and the people who support them.

The Fair Cancer Care campaign asks that everyone sign a petition and get their candidates to support access to the best chemotherapies regardless of cost or ability to pay.

Cancertainty has pulled together more than 40 organizations to get the province to pay for oral chemotherapy. The majority of new chemotherapies will be oral and are not currently paid for by OHIP, as they are not administered in the hospital.

Prostate Cancer Canada has been lobbying hard for OHIP to pay for PSA tests, so prostate cancer can be diagnosed and treated earlier.

The Canadian Breast Cancer Network asked all the major parties if they would:

Take measures to shorten the approval times for reimbursement decisions on drugs for metastatic breast cancer patients?

Put in place a timely review mechanism for the applications of cancer drugs on compassionate grounds?

They only heard back from the Liberals and the Conservatives (who provided a form letter that didn't address the question at all).

I'm certain that health care is a major issue for all who live in Ontario, particularly as our population ages. Tomorrow, vote for health care. 

After the election, let's make sure that equitable access to excellent, high quality health care remains an issue that must be addressed.

please be kind on election day

Three years ago, I took a job as a Deputy Returning Officer for Elections Ontario. I'd read a post by Zoom about how she worked during one election and it intrigued me. At that time, I was mostly pushing myself to step outside my comfort zone. 

Fast forward to June 2014. It turns out that while it feels like much too soon for another election, three years is enough to forget - much like childbirth - the agony of 18 hours of pain, anxiety and boredom.

So I'm doing it again.

Last week I went to the mandatory training session. It turns out that only some of the candidates and the Returning Office have changed. We were given the same materials, shown the same videos and the training was delivered by the same people. The only difference was that since the last viewing, I have coincidentally met some of the actors (all from Ottawa) used in the video.

The Deputy Returning Officer is responsible for setting up the poll, handing out and keeping track of ballots, monitoring the vote and counting the ballots at the end of the evening. There are many, many details involved and quite a bit of responsibility (including determining the validity of ballots at the end of the evening) and yet almost anyone can get hired to do the job. They don't ask for any information from applicants except address, contact information and confirmation that you are over 18.

I imagine it's possible that someone from Elections Ontario does a quick background check but that's really it. If you've ever marvelled at the incompetence of election day staff, it's because there is absolutely nothing done to weed anyone out. And they still have a hard time attracting enough people.

Part of the problem could be the amount of work relative to the wages. The Information Assistants (the only workers who don't have to be of legal voting age) are paid $13/hour just for greeting people at the door. I worked it out and I think I'll only be getting a few cents more than that. There are no breaks and the whole poll has to close every time I go to the bathroom (I'd better time my bladder to need tending during the quiet hours).

The thing I'm the most concerned about is spending the great bulk of my time (14 hours or so) sitting by the Poll Clerk (the person who finds voters on the lists of electors and crosses them off). This person might be perfectly innocuous or even lovely but if not...it makes for an even longer day. Last time, I worked with a university student who was nice enough but kept taking longer and longer "bathroom breaks." At what point do you take someone on about less than acceptable behaviour when you have to keep working with them?

You might well be asking yourself why I'm bothering to do this at all. Consider it my contribution to the electoral process. I've complained enough over the years that it feels good to be doing my part. I did enjoy getting glimpses of friends and neighbours on voting day. And, if I'm not too tired to remember anything, it can be great inspiration for writing.

Tim thinks that people are so irritated about going to the polls that voter turnout will be low. I worry that voters will show up to the polls and take out the irritation on elections staff. Either way (and even if things go well), I'll likely regret my decision some time during the day.

And on June 13 and likely for a few days after that, I plan on being exhausted.

not as simple as it would seem

As someone living with metastatic breast cancer, I pay keen attention to the development of new cancer drugs. And of course I pay particular attention to the drugs that are likely to one day benefit me.

I have been on Herceptin for 7.5 years. My response was rapid and complete and there is no sign that the drug has stopped working. That doesn't mean, however, that I don't worry about the future and how I will proceed once I come to the end of the line with this miracle drug.

Enter trastuzumab emtansine, or TDM-1, as it was more commonly known. Over the last couple of years, I watched with great interest as clinical trials occurred all over North America. I have been personally in touch with several women who had as thorough a response to TDM-1 as I did to Herceptin. It was very exciting.

Then the trials ended and we had to wait for Health Canada to grant their approval. When that hurdle was cleared, I breathed a sigh of relief. Unfortunately, the sigh was a little premature.

The time between Health Canada approval and provincial funding can be long and complicated. Once Health Canada grants its approval, a body called the Pan Oncology Drug Review (pCODR) assesses the drug, a process that can take up to 149 days. After pCODR makes a recommendation, each province decides if it will fund it. And while this is happening, Ontario, unlike some other provinces "...does not have a mechanism in place that would grant cancer patients access on compassionate grounds to a drug that has been approved by Health Canada."

I heard last week from the Canadian Breast Cancer Network that TDM-1, now known as Kadcyla, has been approved for funding "for the treatment of patients with HER2-positive, unresectable locally advanced or metastatic breast cancer who have received prior treatment with trastuzumab (Herceptin)and taxane". Phew.

[Update: I learned from Delaney (see the comments and the Toronto Star interview) that OHIP funding will only be granted for "second line treatment." Should I need Kadcyla, it will be for third line treatment, as I will already have done my first 6 rounds of TAC (first line) and then the vinorelbine and Herceptin combo (second line). I'm only on Herceptin now but the treatment that follows will be third line. That means I'll only get Kadcyla if my private insurance will cover it. This despite the fact that I have known women who've had Kadcyla as a third line treatment, with great success.]

CBCN is urging voters to contact "local candidates and ask them their stance on improving access to breast cancer treatments." Improving access to cancer drugs is also a goal of FairCancerCare.ca. If you haven't already signed our petition, please do so today. You can also ask your local candidates to sign our pledge to advocate for fair cancer care in Ontario. This is super easy to do and takes almost no time at all via the website.

Meanwhile, I've also heard from CBCN that a drug that crosses the brain-blood barrier is in a phase 2 clinical trial. Will this drug be as effective as it promises to be? Will it be available by the time I need it? 

I'm holding my breath a little.

snarky brilliance credit: Andrea Ross

only love

A couple of weekends ago, my family spent the day in Prince Edward County, celebrating my father-in-law's 75 birthday. It was a wonderful day and we were all pretty tired on the long drive home. 

Since the kids both had there headphones on, I started looking through my ipod for music I hadn't heard in a while. I decided I was in the mood for PEI's Lennie Gallant (did you know that practically every second person on the East side of PEI is named Gallant? It really is the name on every other mailbox).

As we listened, Tim and I remembered that one of our first dates was a Lennie Gallant concert at Artspace in Peterborough. I will never forget that evening. Lennie definitely has a special place in my heart.

As we listened, I remembered that, after I quit a job many years ago, I played a song of his over and over in my office. I even had the lyrics taped to my computer. For my last three weeks in the office, I listened to it many times a day.

I thought it was an angry song that I used to bolster myself through a difficult time. I couldn't recall what it was but as the first notes came through the speakers, I remembered.

And it went like this: 

"Only love will guide us through this time
As long as there's one flame
We have a lifeline"

I was so surprised and pleased to be reminded that, at at time when I was very angry, I was affirming to myself that love would get me through.

I wrote this post in my head that Saturday night in the car and then kind of forgot about it. But now, as emotions are running high around the Ontario election, I feel the need to remind myself what matters.

Love isn't the only thing we need to effect real change but it is the most necessary ingredient. We can't get anywhere without it.

drugs are usually > major surgery

Catherine Brunelle, who blogs at Bumpyboobs.ca shared the story of what happened when she was diagonosed with metastatic breast cancer in Ontario:

"I would be put (back) on Zoladex, I was told, which is a drug that puts your ovaries to sleep. Zoladex isnot covered by OHIP. The oncologist wasn’t sure if it would help, but he figured we should try that first and foremost before doing anything else. Except. . . except that monthly shot costs about 500 bucks a pop. Or I could pay 1500 a go and get the three month shot.
But insurance would pay for it.
Right?
…
Oh wait, you don’t have insurance? Well then, you need to have your ovaries removed via surgery.
!!
That is seriously what I was told. And if this post seems a bit fragmented in pace, it’s because to this day I’m stupefied by the solution to my struggling to afford medication – cut out perfectly healthy pieces of my body, despite there being an effective pill that could do the same thing minus the traumatic surgery."

This is mind-boggling. Being submitted to unnecessary surgery at a much higher cost to the system than covering the drug would have been. And at a much greater risk to the patient. 

Ultimately, Catherine was able to qualify for Trillium but with a significant deductible - one she would never have had to pay if she opted for surgery or another kind of treatment.

Catherine supports the campaign at FairCancerCare.ca. She's signed our petition and is now helping to spread the word.

Will you join us?

P.S.: Catherine is also a novelist. I've read her book and it's lovely. You should check that out, too.

wishing you continued good health

As, I mentioned in my last post,  I've been working on a campaign called Fair Cancer Care. We're hoping to create awareness, followed by change to how chemotherapy drugs are covered in Ontario. We launched in time for the provincial election campaign, in the hopes that we can get our local candidates to take an interest. You can find out more at FairCancerCare.ca.

The people behind the campaign are a group of Ottawa residents who have all been affected by cancer. We've all been promoting the hell out of this campaign as the election date draws nearer. My good friend Andrea is a driving force in our group. Her creativity has been key to getting us moving and, as someone who lived through breast cancer, she gets how crucial it is to ensure that everyone gets the best care available.

Yesterday, Andrea had the following exchange via email with someone she knows slightly, who'd been asked to sign our petition. I share the following exchange with Andrea's permission. For the purposes of clarity and my own amusement, we'll call the other person Ms. Smug Hubris.

SH: "I don't believe that cancer causing radiation and toxic chemotherapy is the cure for cancer. Healthy whole food and a healthy lifestyle is."

Andrea: "I thought the exact same thing before I got it. Wishing you continued good health."

Although my response was much cruder (rhymes with "Oh duck off"), I think Andrea was perfect. While Ms. SH is entitled to her opinion, I'll continue to fight for the very best cancer care to be available to everyone. 

Because the thing is, anyone can get cancer. I've known several extremely healthy living, eating and drinking people who've been hit by a cancer diagnosis. I know people who did everything right before and after that diagnosis and died anyway.

We need a cure for cancer. But until then, we need the very best chemotherapies to be available as soon as they are approved. And everyone should have access to the treatment their oncologist prescribes, regardless of ability to pay.

Ms. Smug Hubris can chose whether or not to seek treatment, should she be unlucky enough to get cancer. We'll keep working to make sure it's available.

To learn more and sign our petition, please visit FairCancerCare.ca. You can like us on Facebook, too.

introducing: #FairCancerCare

In Canada, we tend to think that, should be unlucky enough to get cancer, our health care system will cover the cost. For thousands of Canadians, this is not the case.

Ontario is heading into a provincial election. Will you sign our petition to ensure everyone has access to the best care their oncologist prescribes for them? Will you ask the candidates for support when they call you or come to your door?

To find out more, please go to FairCancerCare.ca. You can sign our petition or find out some of numbers beside these facts.

Please take two minutes out of your day and check out our campaign. The next person to find themselves without coverage could be you. Or someone you love.

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.

national metastatic breast cancer awareness day: my statement

Here is the statement I made at today's press conference (see below for details). Thanks so much to Dr. Hedy Fry for introducing the Private Members' Bill and especially to the Canadian Breast Cancer Network for being a tireless advocate for women living with metastasis.

"Cate Edwards, daughter of the late Elizabeth Edwards has said, 'Before my mom was diagnosed with breast cancer, I assumed breast cancer patients fell into two categories: survivors and those who lost the battle.'

Before my own diagnosis, I would have said the same thing.

I learned I had breast cancer in 2006, when I was 38 years old, with two little kids. Three months aftIer I completed treatment, the cancer had spread to my liver. However, I responded well to treatment and 7 months later was in full remission.

In November 2012, I was diagnosed with a metastasis to my brain. After conventional and cyber knife surgeries, I was once again able to embrace the words “no evidence of disease.” I will be in treatment for the rest of my life and, as there are no drugs that effectively cross the brain-blood barrier, I live from scan to scan trying not to dwell on the inevitability of the next brain tumour. 

This is my story. I have known far too many incredible young women, who have done everything they were supposed to do to be healthy and who have not lived to share theirs. 

Like most women living with metastatic breast cancer, I hate the onslaught of pink that hits us every October. I don't feel that all the talk of “feeling your boobies”, of battles won and lost has much to do with me. Much more relevant to me are clinical trials, drug coverage, quality of life and the long term effects of treatment. 

The prevailing theme during Breast Cancer Awareness month, or as many of us call it, “Pinktober”is “stay positive, get through it and then move on.” For those of us living with mets, for whom moving on will never be an option, the unintended message is that we have somehow failed at having cancer. 

Despite – or perhaps because metastatic breast cancer is stage 4 (there is no stage 5), very little emphasis is placed on metastasis in fundraising or awareness campaigns. The specter of death doesn't feel very hopeful. Yet that is where the emphasis should be. 

While it's true that there has been very little decline in the number of deaths from breast cancer in the last couple of decades, many more of us are living longer. And that is very hopeful. 

It is in understanding and committing research to end metastatic breast cancer that we will really find a cure. Given that, it doesn't seem very greedy to be asking for one day every year."

we are a community. and we need to be heard

I was going to post about Blog Out Loud Ottawa (#boloottawa) but that's going to have to wait because I want to tell you all about something that's happening tomorrow.

The text reads:

"The Honourable Dr. Hedy Fry, Member of Parliament for Vancouver Centre and Federal Liberal  Health Critic, will be joined by the Canadian Breast Cancer Network to discuss the tabling of her Private Member’s Bill calling for a National Metastatic Breast Cancer Day on October 13th of each year. The Canadian Breast Cancer Network will be represented by Ms. Niya Chari, Government Relations Manager. Ms. Laurie Kingston will represent the Metastatic Breast Cancer community."

I paused for a moment at the description of my role at the table but then realized how very accurate it is. As much as I wish I didn't have metastatic breast cancer, I am very proud to consider myself part of the MBC community. I'm among some very good, smart, organized, supportive, strong advocates for change.

Metastatic Breast Cancer Awareness Day has already been designated by the US Congress and Senate. A Canadian MBC Awareness Day won't effect change on its own but it's a step in the right direction.

it's tonight!

every three months

Exactly how often should someone living with metastatic breast cancer undergo the tests that monitor our health?

These CT scans, ultrasounds and MRIs are inevitably nerve-wracking, expensive (even if we don't pay for them out of pocket) and sometimes come with a risk of cancer inherent in the test itself. Cancer patients waiting for tests results refer to being in a state of "scanxiety." 

It's impossible to describe what it feels like to wait for test results, unless you've been there.

And those of us with metastatic breast cancer go through it over and over again. It's brutal.

When you live with metastatic cancer, one of your greatest challenges is balancing potentially life-saving interventions with the quality of the life you're keen on saving. It's important to check often enough that you catch any change quickly but not so often that you spend your entire life waiting for tests, undergoing tests and then waiting for results. 

Because that can be paralyzing.

I was speaking to a friend last week who was considering delaying scheduled scans by a few weeks. She said that it  had been implied that she wasn't fighting the way she once had. This made me furious on her behalf, as I can completely understand her need for a period of sanity, when cancer isn't always at top of mind.

In my case, I have the advantage of being in remission and the disadvantage of having an un-protected brain. I know it could just be a matter of time until the next brain tumour. I want to be able to catch it quickly. I also want to stop living my life from scan to scan.

I currently have brain MRIs every three months, at the suggestion of my surgeon. My oncologist would like me to wait until I'm symptomatic but I just can't do that. I have symptoms all the time. Symptoms of brain tumours include headaches, irritability, nausea and clumsiness. Who doesn't feel any of those things from time to time? 

My last scan was April 10. On April 14 my lovely GP called me and opened with the line, "Want to hear the good news?" 

All is well and I can wait another three months until I go through all of this again. 

Or maybe I'll let it stretch to four.

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.

that could have been me

Last week, I was very moved by an interview on CBC Radio with Newfoundland actor-comedian Andy Jones and his wife Mary-Lynn Bernard on the radio about the death of their son, Louis who "passed away by his own hand after a lengthy and brave battle with mental illness...age 28 years." (from Louis' obituary)

Despite pain that was practically palpable, Ms. Bernard and Mr. Jones have been doing media interviews across the country to shed light on mental illness and the very high toll takes on those affected and their loved ones. I was very, very moved by their story, and the brave decision they have made to share it. 

It brought back a very intense memory, part of my own ongoing struggle with depression and anxiety This is just one of my stories:

I remember crawling under the kitchen table in the house we were renting, turning to face the wall and pulling my knees to my chest. I wanted to make myself as small as possible. To disappear. To cease to exist.

I felt defeated and ashamed. I was a failure. 

After many, many months of pretending, hurting, numbing, self-disgust, suicidal fantasies and giving up on getting better, I had accepted a prescription for anti-depressants.

I can acutely recall the self-loathing I felt as I held the prescription bottle in my hand. I was disgusted that I was ill. Disgusted with the weakness of my will. Disgusted that I hadn't been able to just get better on my own.

Depression, as I experienced it, felt like a heavy weight on my chest and limbs. I could not fall asleep at night and then slept for most of the day. When I did get up, eating and dressing would exhaust me and I would sit in front of the television, hair and teeth unbrushed, flipping the channels aimlessly, not really watching. When I did have to leave the house on my own, I wanted nothing more than to be invisible. 

This lasted for months. I was 25 years old.

This was not my first episode of depression and anxiety (I started to wrestle with this in my teens) but it was the longest. And it was the first that did not seem to go away on its own. And so, in the end, I took the prescription. It took a few weeks and a change of meds (the first drug seemed to do nothing for me) and one day, as I was out with the dog, I realized that the fog had lifted. 

I wasn't euphoric. I didn't feel like a different person. I just felt lighter. And interested in the world around me. I felt better. I had hope. 

I'd like to say that was the day I stopped blaming myself for my illness but it wasn't. More than once over the next few years, I took myself off the medication that helps me stay healthy because I was ashamed to be taking it. I didn't know then that abrupt withdrawal can be very dangerous. One time, I actually got off a plane at a stop-over and went to a friend's house because I was so overwhelmed with the desire to harm myself. It took me years to realize that for me, the drugs help and there is no shame in taking them.

This is not to say that everyone dealing with depression needs medication (they don't). Or that everyone needs to stay on it (they don't) but I do, along with talk therapy, exercise, good nutrition and the support of the people I love. I have to stay vigilant and watch for the signs that I need to slow down and take care of myself.

It's only in the last couple of years that I've started to talk about my depression. When I worked, it was my deep, dark secret - onne I realize now I very likely shared with several of my co-workers. There are so many of us who live with mental illness and never talk about it.

My point in sharing all this is to let go of a bit of the shame and chip away a little at the stigma. Andy Jones said in his interview that "compared to people who do heart surgery, the mental health field is still in the 17th century."

Enough already. Mental illness runs in my family. I'm trying to teach my kids to take care of themselves, watch for the signs, seek help and to never be ashamed of who they are.

And we need to treat mental illnesses like any other. We need prevention, treatment and cure. 

Additional reading (otherwise known as some of my very favourite posts from writers who live with anxiety and depression):

"Depression Lies" by Wil Wheaton.

"Today and forever" by Jenny Lawson (The Bloggess).

"Adventures in Depression" and "Depression Part Two" by Allie Brosh (of Hyperbole and a Half)

"Depression. There. I said it." by Rachael Herron.


Update: This post was featured by BlogHer on April 4th.

help keep the treatments coming

An open letter to everyone who reads this blog:

Did you know that, in Ontario, where I live, public health care pays for drugs administered in the hospital but not (most of the time) for those that are administered orally or at home? I've been extremely fortunate that most of my drugs were covered by OHIP and those few that weren't (mostly for mitigating side effects) were covered by my private insurance.

My friend Sue hasn't been that lucky. The chemotherapy drugs she needs for her lymphoma are best administered at home. As Sue points out, this is less expensive (the overhead costs are low and the possibility of her catching something that would land her in hospital is much lower) but she has been forced to pay for this life-saving treatment herself.

Sue is, without exaggeration, one of the kindest most generous people I have ever known. For many years (I first met her in 1996), she worked in a local pet supply place, where she provided advice and support to countless people and their pets. She seemed to remember every person and animal she met, whether on the street, in the dog park or at the store. She has personally rescued more than 500 dogs but knows how to help without passing judgement. I've never met anyone like her.

Not long ago, the store she worked for was sold to a chain and the new owners decided to lay off the senior staff, in favour of less-experienced minimum wages workers. On Sue's last day, hundreds streamed through to deliver presents, wish her well and give her hugs. She is a very loved part of our community.

When Sue was diagnosed with cancer, she was still without the benefits she lost when she was laid off. There are programs that help with the costs of drugs but they required that she must first drain her bank account of the money she'd received as severance pay and an inheritance from her mother, who passed away recently. So far, she has spent $50,000 of her own money.

She will soon have burned through all her savings and her inheritance. She will qualify for provincial support but will not have money to pay her rent and continue treatment during the waiting period. Will you help us close that gap? An online fundraiser has been set up to "keep the cancer treatments coming." Even if you can't help with a donation, please spread the word. I'm sure that we can reach the fundraising goal of $5000.00.

Sue's story could have been mine. This could happen to someone you know and love. We need to change this arbitrary line drawn by OHIP. But in the short term, let's help Sue, who has given so much help to so many people.

Photo courtesy Sue Breen.

reluctantly gluten free

Last fall, I got tired of feeling crummy all the time. I'm sure the fatigue and the gastrointestinal issues were exacerbated by the round of antibiotics I'd had to go on after my surgery but I just wasn't getting better. I needed to give myself a chance to heal.

In the spring, a cousin and her spouse had been on the Brown Rice Diet. Laura also happens to be a naturopathic doctor, so I had asked her about it at the time and got her to send me the info. It's not a diet in the weight loss sense of the word but more of an elimination of all potential allergens. For three weeks, the only grain I ate was brown rice. I ate chicken, fish and a bit of lamb but no other red meat and no shellfish. Alcohol, dairy, sugar and all processed food were also verboten - but I could eat as much of anything as I wanted.

At the end of the first week, I was ready to chew off a limb. Despite consuming lots of food, I was hungry and irritable. I almost gave up. Instead, I increased my protein intake and two days later I felt flat out amazing. I had tons of energy, no cravings at all (I sat in front of a table full of wine, chocolate and cheese at book club and sipped sparkling water, not minding at all). I lost 10lbs, which I'm told was water weight, as I let go of sugar induced inflammation.

At the end of three weeks, I reintroduced grains, like quinoa that don't contain gluten. I was fine.

I introduced bread and got sick. My son was also ill, so I decided it might be a coincidence, and that I should take gluten out of my diet and reintroduce it later.

I had no reaction when I reintroduced yogurt. Or cheese. I re-introduced gluten and got sick again.

Over the holidays (Chanukah, Christmas, New Year's...) I ate pretty much whatever I wanted. I felt sluggish, bloated and irritable and by the new year, was ready to eliminate gluten again.

After a couple of weeks, I didn't feel fantastic but I didn't feel terrible. Mostly, I was irritated that I couldn't eat gluten. I missed Tim's home-made bread. I missed the chocolate cookies from the Wild Oat. I missed beer. I started to wonder if there was a point to all the deprivation.

Then came Tim's birthday and I decided to make Too Much Chocolate Cake. And, after three weeks without gluten, I had a giant slice. Then I had another one the next day. And the day after that, I was  a mess. My distress was not so much gastrointestinal as emotional. I was irritable angry furious. I was depressed. I was in despair. It was awful. And then, suddenly, it was over. I felt fine again.

So the gluten is gone for good (Tim says that the scientist in him would love to give me a slice of chocolate cake, just to see what happens but, out of self-preservation, he thinks that would be a bad idea).

I'm still figuring out what it means to be gluten free. Sometimes, I'm surprised by how easy it is. Other times, I feel frustrated that it feels complicated.

I don't feel amazing.. To do that, I guess I'd have to cut out the alcohol, sugar and processed stuff. Maybe that's next but for now, I'll just try and keep it to a minimum.