grieving and treatment

My father passed away a couple of weeks ago (the night before I started IT Herceptin, in fact). His service was last week. It was small and private. I was very impressed with the priest who had never met my father but listened to my mom and my sister and said some very thoughtful things.

The end of my father's life was not an easy one and, in his last days, I was unable to get to the hospital. I didn't (we didn't) want to put my treatment in jeopardy by exposing myself to hospital germs. 

It was the right call but it was hard and it made everything seem less real and further away. 

I have realized that grieving, or working through, a death is perhaps not so compatible with intense cancer treatment. I need to stay focused, informed, strong and clear as we go forward.

I need to keep putting one foot in front of the other and get to treatment every single week. I need to build a relationship with a new oncologist (who I had never met before starting the IT Herceptin). I need to figure out what I wish to do when it comes to increasing doses and deciding how to proceed (my new oncologist is very thoughtful but also consultative. He acknowledges that we are smart and well informed - and that there is a paucity of information out there). 

I need to walk that line between getting stuff done, having some fun, staying vigilant and getting enough rest.

It turns out that my regular oncologist, who has followed me since 2006, is unlikely to return for several months (I do not know the details as to why and don't feel that I am entitled to them. Something very hard must have happened and I hope that he is getting what he needs). What I didn't realize is that the other doctor, who convinced my oncologist to go the route of IT Herceptin, is finished at our hospital and is now in Boston. At least he is reachable via email by my medical staff but he's not here to question and to reassure.

All that to say that I want to grieve. I want to hold up my emotions to the light and and think about what this recent loss means. I don't cry easily and it has yet to really happen.

The service helped. And I have been thinking of the things that were important to my father that he passed on to me: intellect, honesty, respect for privacy, a love of literature and a curiosity about the world and it's differences. 

And despite all that he went through at the end, I know that he would want me to keep putting one foot in front of the other.

Two of my boys out for our meal after the service.

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.

earth day baby

April 22, 2003

April 22, 2015*

Daniel is kind, funny, smart, loving, loyal, thoughtful and self-aware. I couldn't be prouder of being his mom.

*I can't resist bragging. He was all dressed up on his birthday to do a presentation at the Ottawa Regional Heritage Fair. His group's presentation was "The Truth about Residential Schools" and they won a prize. More importantly, they chose this topic, researched it thoroughly and presented it with great sensitivity and clarity. I know I'm biased but I was a little blown away.

bouncing ball

Stand at the top of a driveway. Bounce a rubber ball as hard as you can. Notice how each time the ball hits the ground, it re-bounds a little less.

I have a lot of empathy for rubber balls right now.

In my last post, I somewhat hesitantly shared good news from my neurosurgeon. Things were looking better and he didn't need to see me or do another scan for three months.

I was relieved but also a bit uneasy. I pushed for the report from the radiologist. I also went to yoga classes, hung out with friends and family, rode my bike and went about my daily life with a little more spring in my step bounce in my walk than I have in a while.

Last Wednesday, the other shoe dropped. The phone rang at about 5pm as I was racing to get some food on the table and my youngest out the door to an orientation at a potential new school. My mother was here and I was trying to visit with her at the same time. I really wasn't braced for anything serious on the other end of the phone line.

It was the secretary who works with my neurosurgeon calling again. She told me that Dr. S spoke with the radiologist and they both agreed that the mass at the previous surgery site is “stable” (That's good. Not as good as “smaller” but OK.) but there is a second spot that is “of concern” to both of them. Dr. S wants to do another MRI, six weeks from the last one, and he wants to see me this week in his office.

Or something like that. It's all a little bit of a blur. I think I went into shock.

I was in a hurry and didn't really want to explain so I tried to pretend that nothing was wrong, failing miserably. I can't put into words how it feels to sustain that kind of blow when you least expect it and then to just keep going, as though nothing has happened. I've done it before but I have never been very good at it.

It's a testament to the (maybe) new school that the presentation and tour were absorbing enough that I actually remember chunks of the evening. What I do remember well is that when I got home, I crawled into bed and had a good cry.

The next morning I got up, got the kids out the door, went for a run and then had a latte on a patio in the sunshine. I felt better.

It's getting harder to pick myself up, dust myself off and keep going on with my life. I'm bouncing back a little less high and it's a little easier to knock me back down again.

While I have had truly excellent, cutting edge care every step of the way, I wish that communication were better. I wish my doctors spoke with each other. I wish we planned next steps together. The process shouldn't wear me down. The disease is hard enough.

I'm feeling a little less resilient these days. Eventually, every ball stops bouncing, rolls for a while and comes to a stop.

I'm tired of this metaphor. I need to come up with a new one.

driving dreams

As some of you know, I don't drive. I've had several false starts. I even passed my in-car test when I spent a summer in the Yukon in 1986 but didn't take the final step to have that license validated.*

In total, I have had a "learner's permit" three times, taken drivers' education courses twice (not finishing either time) and taken countless in-car driving lessons. There have been many people who have offered to drive with me so I could practice who have not wanted to repeat the experience.

Still, "get drivers' licence" has been carried forward on my "to-do" list for many years. I've never quite given up on the idea but I never seem to follow through. I think I have a phobia at this point.

A while ago, I had two dreams in the same night (before the latest round of MRIs and meeting with the neurosurgeon. My brain worries were present but not front and centre). Both were about driving and were so clear that I wrote them down when I awoke. If you know anything about driving dreams, I'd love to know what you think.

Dream 1:
I had borrowed a red van from a friend. It was parked in front of the neighbours' across the street . This is not a legal parking spot. I decided at the last minute that I shouldn't drive the van on my own and I went to get Tim (my spouse). When we got back, there was a big truck parked where the van had been surrounded by workers loading it up. The red van was nowhere to be seen.
I asked one of the men unloading the truck about the van and he told me they moved it one street over because it wasn't supposed to be parked there and they'd needed the spot. He told me, raising his eyebrows, that I had left the keys in the ignition and gave them to me.

Dream 2:

I was at a strip mall with Daniel (my 11 year old) and we got into a grey four door sedan, him on the driver's side and me on the other. We started going and I kept saying to Daniel, “Sit up!” “Press the brakes!” We drove through the parking lot without hitting anything or anyone and then through a 4 way intersection and up a side street filled with pedestrians. We even drove by a baby crawling along the side of the road, passing very close. The baby seemed oblivious. The street ended at the top of a hill and we coasted to a stop.
We got out and folded the car up and wheeled it like a wheelbarrow back down the street. I went to find Tim so he could drive us home. I was very relieved but also worried that someone had reported our license plate or caught us on camera.

I borrowed a book from the library about dreams. There was a whole chapter on cars that didn't really speak to me, except for the following "the movement of your car is a metaphor for the way you're trying to make progress in life and the extent to which you feel in control." There was nothing really helpful about kids (nothing about narrowly missing babies or having your kid drive the car) and nothing about a fear of driving.

A key thing about both dreams is that while they were anxiety provoking, both had positive outcomes. I got the van back in the first dream (even though I'd left keys in the ignition) and no babies were crushed under the wheels of my car in the second. It's clear that I'm feeling a lack of control but there must be something good going on between my ears if things ended as they did. It is interesting to me that, in both cases, I felt embarrassed and worried about getting into trouble.

What do you think? I'd love to know about any similar dreams folks have had and where you have turned to find answers.

*The driving tests in Ross River, where I was living, were at that time administered by the RCMP. They gave me a letter that said I'd passed but I was supposed to take it to White Horse to be validated and get an official licence. I never got around to it, perhaps because I didn't really believe that I deserved to have passed. Ross River had only one 4-way intersection, no traffic lights and no place where I could parallel park. Still, I managed to make a right turn into the left lane, facing what would have been on-coming traffic, had there been any.

I might have been a little intimidated by the armed police officer administering the test. I still can't believe he passed me.

too much. all at once.

Last week, I had CT scans* and treatment on Tuesday, a brain MRI on Wednesday and a bone scan on Thursday. 

There was also an incident on Tuesday evening with one of the boys, which culminated in the following text from my beloved: 

"I now know what projectile vomiting looks like. Can you check Groupon for car detailing deals?"

All is well (we've come to realize that vomiting is an excellent response to anaphylactic allergies) but if none of us has to see the inside of a hospital for a while, that would be just fine.

As I type this, I'm reminded how grateful I am for our health care system. I shudder to think how big the bills would have been, if we had to pay them. We don't have to justify any of these costs to an HMO. We needed care and we got it. 

*I have the results of the CT scans. My abdomen, pelvis and thorax are all still free of visible metastatic disease. 

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.

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.

late to the party

My last post was called, "just under the wire." I sense a theme developing here. Perhaps it's better to get things up at the last minute or even late, rather than not at all.

Last Friday was Halloween and it was a milestone for my family - the first time in 16 years that my spouse and I were home together all evening. So weird.

Sacha dressed up for school, then helped a friend with his haunted house and watched Shaun of the Dead. He ended the evening with a midnight showing of the Rocky Horror Picture Show. We didn't actually see him from the time he left for school in the morning until we heard him and his friends come in after the show. We got some of the details over bagels the next morning (a few of the boys slept over). It sounds like it was a great evening.

Bob from Bob's Burgers

"Best Group Costume"

For the first year ever, Daniel went Trick or Treating without an adult. Two of his friends came over after dinner and they went to collect two other friends in the neighbourhood. They trick-or-treated for a while and then went to one boy's house to watch The Nightmare Before Christmas and Beetlejuice. Daniel came home tired and euphoric, with the smallest bag of candy I have ever seen on Halloween. Clearly far more time was spent walking and talking then actually trick or treating. It sounds like a great evening.

Space Cowboy, inspired by Sparks Nevada

The division of labour in our house was always such that I stayed home and gave out candy and Tim went out with the boys. This was my choice. Perversely, now that I will never get the chance, I wish I had gone out trick-or-treating with my kids at least once.

It wasn't a relaxing evening in our house. Toby, the dog we adopted in May, barks when the doorbell rings or someone knocks. This happens when he thinks he hears knocking (the other dog might just be scratching herself) or when he hears the doorbell on TV. Sometimes, he even barks when he hears somebody come down the stairs in the house. So Halloween? Drove him crazy. And he whipped Lucy into a frenzy. By the end of the evening my nerves were raw but the dogs seemed pretty happy. I think they had a great evening.

Gratuitous photo of Lucy (the co-barker) from last Halloween. The dogs wouldn't sit still
long enough for a photo in this year's Halloween hats.

I'm pleased to announce that I didn't eat any Halloween candy this year. But I might have had a whiskey. And some cheezies. They go surprisingly well together

just skip the anesthesia. he's tough.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

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.

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.

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.

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.

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.

 

best gingerbread house ever

I'm feeling like it's time to start blogging again but as I come out of the post-holiday post-headcold (and it was a doozy) fog, I'm finding that I'm not quite ready to jump into the blogging pond.

Instead, I'll dip my toe in and share this with you. I do think it's the best gingerbread house I have ever seen.

Those are heads growing out of the roof. My 10 year old has the best imagination. Or perhaps the most twisted. Either way, I love it.

Hallowe'en re-cap

A few days before Hallowe'en, parents received an email stating that, while dressing up on October 31st was encouraged, costumes could not include "weapons or blood." This was Daniel's quick solution.

Apparently, everyone at the school was fine.

Every Hallowe'en at our house begins with carving.

Our pumpkin wore a knight's helmet, to complement the evening's costume.

Don't let the serious face fool you. He was thrilled.

And I got to bemoan the fact that I had my child's "blood on my hands."

Even Lucy got in on the fun, albeit reluctantly.

And the biggest news of all? 

my good bad dog: a love story

She makes an excellent, if somewhat smelly pillow.

It's a good thing she's cute.

This is her Hallowe'en costume. It suits her.

She jumps up on visitors and gets into the garbage at least once a week. She ignores most commands, unless she feels like listening and she steals food off the table (one time a fresh baked lemon meringue pie), the moment you turn your back. She'd run into traffic, if she thought there were something interesting on the other side of the street. She hates to get her feet wet but will roll in the mud. She disappears the instant I have a brush in my hand.

But she comes when called (most of the time) and materializes from out of nowhere when I put on my shoes for a walk. She loves me exuberantly and unconditionally. To her, I will always be The Best and Most Important, even when I have lost confidence in myself. She is happy almost every moment of every day and she gets me out the door when I'm feeling unmotivated.

She has the sweetest temperament of any living being and I have watched a child pull her out of a hiding place by her tail, without a whimper or a growl. She'll sit in a lap like a toddler and will fall asleep in my arms, with her head on my shoulder. I call her my Hairy Little Girl and whole host of names too embarrassing to repeat in this space.

She's a balm on my bruised spirit and an undemanding, forgiving companion. She makes me smile and even laugh on the days my heart hurts the most. She reminds me to be happy, to let go of the little things and how much fun it is just to be alive.

She's formally called Amaia Fiesta Lucy Diamond. She's a very good bad dog.