stable and unremarkable. my new favourite words.

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.

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.

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.

so this happened

On April 1st, I had a brain MRI. 

Then, last week, the very competent secretary who works with my neurosurgeon, left me the following message on my voice mail: "The written report is not yet available but Dr. S. has looked at your MRI and he says that it looks better. He says he doesn't need to see you but that you can make an appointment to see him if you want. He wants to do another MRI in three months."

And that was it.

Yes, it's good news. Yes, I'm relieved. But I'm also confused.

How is it "better"? Has the mass stopped growing? Become smaller? Is he now convinced that it doesn't have to come out? Has the other reported mass (deeper in my cerebellum) disappeared?

I called the secretary back the next day but she had no further information. She did offer to send an email asking for the written report to be expedited.

I still don't have it.

It occurred to me that the radiologist (who writes up the MRI reports) has been the most pessimistic player in this game I've been involved in since late summer. His report prompted Dr. G to tell me I had a new tumour (the radiation oncologist and neurosurgeon weren't so sure and, after more testing, decided it was necrotic - dead - tissue caused by radiation). 

It was the radiologist who wrote that I had a recurrence and a new tumour, most recently.

And the radiologist wrote the report that I saw at appointment with the neurosurgeon on March 12. Dr. S was concerned enough to suggest I was going to need surgery but not convinced that we were looking at a new tumour. He was outright dismissive of the existence of a new tumour, deeper in the cerebellum.

Now that Dr. S has put off surgery, at least for the next three months, I need to know what the radiologist (Dr. Doom-and-Gloom) has to say.

Tim and I have both noticed that oncologists and surgeons seem to have little respect for radiologists (it's like they barely graduated from high school, let alone medical school). Still, we'd like to get our hands on that written report.

I've had to sit with this information for a bit before I could write about it. This is partly because it's awfully difficult to explain. I've done my best but feel free to ask questions in the comments or contact me directly. 

It was also a shock.

And I was a little embarrassed. First I have a brain tumour. Then I might not. Then I don't. Then I do. And now - maybe not?

I feel like the Boy who Cried Wolf (the Girl who Cried Tumour?), except that I haven't been playing at any of this. And I know that no one who cares for me is actually going to be disappointed that I'm not getting ready for imminent brain surgery.

I want that report. I want the results of the bone scan I had the next day (I'm trying not to be worried that I can't get a nurse to give me those over the phone).

And then I want to try and live my life to the fullest, with all it's ups and downs. Will you help me?

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.

some good news for a change

Something good was announced last week and I nearly missed it.

A news release from the Canadian Breast Cancer Network landed in my inbox last Wednesday. It contained the fantastic news that Kadcyla (formerly known as TDM-1) has been approved "on a time limited basis" for "HER-2 positive, metastatic breast cancer patients who have initiated or completed at least two lines of HER-2 targeted therapy and who have not received Kadcyla in previous lines of therapy."

This is very positive news. As I wrote in back in June, the drug was initially only approved for women in their "second line" of treatment which would exclude me. This despite the fact the many women in later phases of treatment have responded enormously well to the drug (each stage of chemotherapy/targeted therapy treatment is a "line." If one line fails or stops working, a patient is moved on to the next. I have been in my second line of treatment since being diagnosed with metastasis in November 2007.)

In other words, this announcement means that I, a woman with Her2+ metastatic breast cancer, will potentially be eligible for Kadcyla when if Herceptin fails.

This has been a rough week in Canada. The events of last Wednesday completely eclipsed this news, even for those of us who care deeply. I live in Ottawa. My kids' schools and my husbands office were locked down all day. My brother-in-law works at the House of Commons and was very close to where bullets were fired. I spent the day glued to my computer screen, watching the news and refreshing Twitter. Despite a host of rumours, it was a great relief to learn at the end of the day that there had only been one gunman but for much of the day, we just didn't know. It was harrowing. And such a tragedy.

I decided to wait for the dust to settle to post this little bit of news but then another big, sad story erupted on the weekend and I once again found myself glued to social media. Last night, there were some I follow posting pictures of kittens and puppies on Twitter, just to have something more positive to in their news streams. 

My contribution to adding #somethingnice to my Twitter stream. A dog in  Hallowe'en costume!

So while the dust hasn't settled, I wanted to share my own little bit of something positive. I'm just left wondering what "for a limited time" means. Will the province then withdraw coverage? Or is this like a trial to see if it makes sense to continue?

The Canadian Breast Cancer Network calls this "a step in the right direction." Let's hope the province takes more and more permanent steps soon. Let's keep the good news coming.

so i voted

Yesterday, municipal elections were held across Ontario. We elected our mayors, city councillors and school trustees. And I almost didn't vote.

I had a few friends ask me, in the days before the election, "Who are the progressive candidates? How are you voting?" I was at a loss to answer.

The truth is that our mayor, while not running unopposed, might as well have been. And while I acknowledge that he's very hardworking, I'm not a big fan.

My city councillor seems like a decent enough guy but I have not found him to be very responsive, the couple of times I've had to contact his office. I've also heard interviews with him, where he seems to arguing both sides of any given scenario. I'm not sure that makes him very effective at city hall. At any rate, he too seemed to running without any real opposition.

The candidate for school trustee was literally running without opposition, as he was acclaimed.

In my corner of Ottawa, the election was not very exciting and participation didn't seem compelling.

Then my kids overheard my spouse and I talking about the election and asked why I was considering not going to the polls on voting day. I had a hard time coming up with an answer that didn't sound apathetic and lazy to my own ears.

In 1988, I was part of an exchange program, that took me first to Alberta and then India. While we were overseas, a federal election was going to take place. At that time, people out of the country for an exchange program could not vote in advance polls or cast a special ballot (this loophole has long been changed). I was bitterly disappointed, as this would have been the first election since I had come of age.

The other thing I remember is that in my group of 7 Canadians (and seven Indians who looked on with interest), I was the only one who cared that we couldn't vote. As someone who bitterly opposed the sitting government, I wanted to have my say.

I have come to understand the perspective of some of my friends. We are not going to affect great change solely through the ballot box. I guess I've just decided that the ballot box is still important.

My kids are interested and engaged with the world around them. I don't want to send the message that their mother is apathetic or so jaded that she couldn't be bothered to walk three blocks to the polling station.

So I picked up my youngest from school yesterday and took him with me to vote. He watched me fill in my ballot and submit it for tabulation (electronic! Can anyone explain to me why we don't have this at the federal level?). In the end, I filled out my choice for councillor on the single ballot but didn't vote for any mayoral candidate. On the way home, we discussed how I had filled in my ballot and my reasons for making the choices that I did.

All over the world there are those who are denied the right to vote. As a woman, I have only had that right for a short part of my country's history. Showing up at the polls may not change much but I'm glad I have the chance to do so. And I want my kids to understand the range of options they can use to make their voices heard, even in a tiny way.

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.

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.

allergies

There's been much discussion in recent years of the potential of using small amounts of allergens to help allergic kids develop tolerance and overcome allergies. Most recently, a study was published in The Lancet and featured in the news around the world.

These stories are very hopeful and I bet there is more good news on this front to come. However, as much as I would wish it to be the case, a handful of promising studies don't mean that my peanut allergic son will be giving up his auto-injector.

To the contrary, Daniel just concluded participation in a year long study. For a year, he wore a peanut protein patch on his back every day, removing one patch only to place another in a different spot. And for a a year, he wore a shirt all the time, even when swimming, because he got tired of explaining the loonie-sized welts on his back (this is how we knew he wasn't in the control group).

And when the trial drew to an end, he had the same anaphylactic reaction that he had when he'd first qualified for the trial (they gave him tiny amounts of peanut protein while he was hooked up to IV antihistamine). He actually reacted more quickly after a year of exposure. We have since learned that of the dozen or so kids that have finished the Canadian trial so far, half have improved, while the rest have not.

We saw the allergist a couple of days ago and he theorized that the most allergic subjects would be the least responsive to this kind of treatment. What's more, he was not surprised that Daniel is now allergic to chick peas, peas and probably other legumes. They are "cross-allergenic" with peanuts and this new allergy could well be related to the year of peanut exposure.

He's also added birch and elm (which may just be random, I don't know enough to say) to allergies to maple, all nuts, peanuts and cats.

The one bit of good news we got was that Daniel has outgrown his allergy to dogs. Since the notion of "hypo-allergenic" dogs was thoroughly dismissed by this same allergist a few years ago, we've felt a bit guilty about our dog's presence in the house and have tried to keep her out of his room. Now we don't have to.

Or, as Daniel says, "Now we can have five dogs."

That's my boy.

Update: Dreamfilm Productions told me in the comments that they have a documentary airing on The Nature of Things on February 27. It looks fascinating. I definitely plan to watch.

 

in others words

I have pre-empted my scheduled blog post because the internet kind of exploded last night and it spilled over into today. The whole thing made me so emotional as to be almost inarticulate with rage. Luckily, there have been several good pieces published today that make my words unnecessary.

Sorry for being so cryptic. Just click through. You'll understand.

"On Live-Tweeting One's Suffering" (Megan Barber in The Atlantic)

"Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams" (Daniel D'Addario, Salon)
"I have cancer. And I'll write about it as much as I fucking want." (Bob LeDrew, Medium)

remembering

photo: Benoit Aubry, Ottawa (Wikimedia Commons)

Across Canada today, people are attending events, watching ceremonies and wearing poppies in remembrance of those who lost their lives and lived through war around the world.

It's a time of gratitude for willing sacrifice and for melancholy remembrance of all that has been lost.

This year, there was a fair bit of controversy over those who would replace the traditional red poppies with white, to symbolize a commitment to peace. In my view, there has been far too much hyperbole on both sides of the issue. Those who advocate change, accuse those who wear red as glorifying war. Those who love the traditional red poppy have called the white "disrespectful rubbish" and those who advocate for them "morons."

Personally, I think it matters little what colour poppy you wear.

So many young men and women have given their lives in Canada's military. So many more have come home grievously injured in ways that are visible and some that are not. We should remember their sacrifice and work to make sure that medical and psychological services are in place for those who return. Providing a decent pension and access to education and employment is a genuine way to thank a soldier for his or her service.

Some who fought in Canada's "Great Wars" were children who lied (while the military recruiters turned a blind eye) so they could fight for their country and so that they could be employed. All over the world, there are child soldiers being recruited through enticements and threats. On Remembrance Day, I think of all the young people who's future is eradicated or greatly compromised because of the scourge of war.

Thousands of men and women have suffered at the hands of there own brothers and sisters in the military. Since the WW1 and before, soldiers have died because of bad decisions at the top or at the political whim of government. Many have been sexually assaulted, only to face silence and retribution if they have spoken out. The military has been slow to address violence and mental illness within its own ranks. We must take a moment to remember those who have suffered and to celebrate those brave soldiers who've had the courage to speak out and to advocate for change.

You don't have to believe that every battle or even every war was just in order to be grateful. It takes nothing away from veterans to say that we need to do more for those who have come home. It's not disrespectful to remember war while calling for peace. And I know there are many veterans who would agree with me.

welcome to October

My Facebook and Twitter feed is filled with exclamations. No one can believe it's here. Neither can I.

Welcome to October.

Is it just be or is the annual deluge of pink crap just slightly toned down this year? Maybe I've just had my head under a rock. I was literally offline for a week and it's been longer than that since I've been in a store. I don't listen to commercial radio or watch television that isn't Netflix, so I've been pretty sheltered, so far. I'm thankful.

I'm still astounded at some of the awful pink stuff out there and I'll be featuring some of the best throughout the month, along with genuinely topical and even helpful information about breast cancer and the organizations and people who are out there doing good work.

In short, you can come here this month, if you're in need of some pink de-toxing. This is a pinxploitation free zone.

For today, here is a letter I wrote a couple of years ago, to Q on CBC Radio, that was the Letter of the Day.

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!