twilight zone

Week two was harder than week one. This is partly because I am more impatient and partly that I think this is what happens at week two. It's two steps forward, one step back.

I had my staples out on Tuesday. And then slept for hours.

I'm walking a little further every day.

I still have trouble concentrating and haven't read anything. I have a writing contest to enter for the first time and I am not sure I can do it.

I watched Baby Mama this week, finished Brooklyn NineNine and Midsomer Murders.

My head hurts. Apparently it's quite swollen. I'm also told there are sutures inside my head, which is kind of weird.

Last week I had the CT scan for Cyber Knife radiation. I made them double check that they could do it and make the mask, despite the fact that I still had my staples. They told me it was not a problem. Today I got a phone call - cyber knife is re-scheduled and I have to go in next week for another CT scan because they can't use the one with the staples.

I am in the twilight zone.

for tim

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

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

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

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

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

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

Poor Tim. He's stuck with me.

healing

Waiting for surgery

In the end, I was in surgery for 9 hours. It was hard but every day was a little better. And by Sunday night, I was home.

7 inches of staples

Dr. S doesn't shave his patients before surgery.

A shiner that appears to have been caused on the inside.

I have no idea why there are staples in my forehead.

All three spots were biopsied and then removed. The one at the original site (that has caused the roller coaster we've been on since the summer) was necrotic tissue. So was the new one that had just appeared, not too far away. But the other one, the one nearer to the brain stem that was a bit hard to see from different angles? That one was breast cancer.

It's gone now and I have been fitted for a mask and will have cyber knife radiation on May 26.

One thing I have come to realize is that all of this is as much of an art as a science. There are no specific directions. But I'm here. 

I'd better heal well and then make the best of it.

it's on

Tomorrow morning. I have to be  there at 6am. Surgery scheduled for 8am (when Tim will be kicked out of the hospital and forced to go to Costco).

Tim will be updating, as he has news on Twitter (as he says, his stream will now be news of me and how much he hates the drivers at Lansdowne). Don't look for too much too soon, as the surgery has been booked for 7 hours, so he's unlikely to have news between when he leaves me and at least 3pm or so (last time it was 9 hours. Sometimes, it takes longer and it doesn't necessarily mean anything went wrong).

Tim will likely have biopsy results of all three spots once the surgery is done but I have asked him not discuss this until he and I have had a chance to talk.

I'll be in the hospital for 3-5 days. I should be ready for visitors by Friday but please check in (over email or text) before coming, 

Wish me luck. See you on the other side.

2 more days in the sun

Yesterday, I had the best massage of my life. During my appointment my phone was off. When I turned it back on, there was voice mail.

My surgery was delayed for two days until Thursday, May 7.

Maybe it was the massage or maybe it was the chance to have two more days to enjoy the beautiful weather we have been having but the delay didn't bother me at all. It helps to remember that not much bumps a brain tumour - whoever had surgery instead today must have needed it very badly.

So today, I worked my way through my to do list, walked the dogs, puttered a bit and had a visit with an a old friend. We had a wonderful dinner, ate Dilly Bars in the back yard and just hung out. It was good.

I can fill my anxiety building again and I know the inevitable was just postponed but it's been nice to have a little extra time.

pre-op

Some people need to gain some interpersonal skills.

Yesterday, morning I had my pre-admission appointment at the hospital.

First I checked in with admissions, gave them my insurance info, requested a private or semi-private room, if available and declined to rent a TV or phone (note to self: make sure to pack phone and charger and load up tablet with mindless videos).

Next we went to the pre-surgery unit (not it's official name but you get the idea) where we met with a bunch more people (last time, I remember going from room to room instead of having folks come to us but my memory of the last time is extremely untrustworthy). I got weighed, peed in a cup, had blood drawn (they aren't allowed to access my port so had to get a vein my arm to work - ouch!) met with a pharmacy tech, a couple of nurses and an anesthetist.

I'm not allowed to take vitamins on the day of surgery (fair enough), no "herbals" for seven days ahead of time (that includes my precious tea with valerian and melatonin) but I can pretty much go nuts with the Ativan. 

The surgery will be about seven hours long (give or take. Last time they said six hours and it was nine. This was extremely hard for those waiting to hear how things had gone. I was oblivious, as this thankfully not the kind of brain surgery where you need to be awake). The nurse with whom we met says she thinks I'll probably be Dr. S's only patient that day. I guess this is a good thing.

We were at the hospital for almost three hours. When we were done, we went out for lunch and then I came home and (despite many cups of coffee) slept like the dead for almost two hours. It's also a treatment week but this appointment really knocked the stuffing out of me.

it's deja vu all over again

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

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

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

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

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

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

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

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

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

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

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

Thanks and with much love,

Laurie

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

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.

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?

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.

here we go again...

A couple of months ago, I wrote about the roller coaster ride I was on in the fall. Once you have been diagnosed with metastatic breast cancer, you are always on a roller coaster. The truth is, that even through long quiet periods, I have lived half-expecting that ride to start up again.

These are the latest developments in my own personal ride:

I have had 3 MRIs since my last post on this subject -  on December 8, January 12 and February 23. The first wasn't detailed enough, which led to the second (which I was told was "stable") and finally to the one I had two weeks ago.

I put off calling about results for two weeks, which is very patient for me. When I connected with the neurosurgeon's secretary (who had been very happy to give me results over the phone in the past), she asked me to come in on Thursday afternoon. I have been completely unable to concentrate on anything except back-to-back episodes of the Good Wife since that phone call.

My appointment was yesterday. The thing about having two days to imagine the worst, is that even bad news can seem OK - at least at first. I'll try and lay it out here at least somewhat coherently:

The spot on my cerebellum (in the site of my original tumour) has grown. 

The MRI report states that it is highly likely to be a recurrence of the metastatic tumour. It also states that there is a new spot on the cerebellum, deeper into the brain.

My neurosurgeon feels somewhat differently. He said emphatically that he doesn't see the new spot at all and doesn't believe there is anything there. He also feels that it's still possible that the patch that's growing could be necrotic tissue, caused by radiation. 

If we weigh the evidence, the spot is showing "more heat" (tumours are "hot", dead tissue is "cold") - something that could indicate a tumour. On the other hand, there is no swelling at all at the site, which is a very good sign. The only way to know for sure is to operate.

Necrotic tissue can be treated with steroids but treatment lasts for months (at a very high dose), during which a tumour would be free to keep growing. The only way to know for sure is to do a biopsy, at which point we might as well remove the mass surgically. 

We're going to do another MRI in 3 weeks. There is still a slight chance that the mass will stabilize or shrink but at this stage (29 months post radiation treatment), this is a remote possibility. It's likely that I will be having brain surgery again in a few weeks. The good news is that as I have "a trap door" into my brain, the surgeon won't have to cut into bone which will hopefully make the surgery and my recovery quicker.

If the smaller spot has grown at all, it will likely be treated with cyber knife radiation, as it's not in a spot that can be reached with surgery (but we're still hoping that there is nothing there).

We are struggling with this news and still processing the ramifications. As many of you know, brain metastasis and what it can mean is my very worst fear. Also, having been through brain surgery once, I am apprehensive about living through it all again. Finally, it is really hard to live in suspense like this for weeks at a time. I have plans for the spring and summer but at the moment, absolutely everything is up in the air.

I really hope this isn't a recurrence of the cancer. I won't know for several weeks, during which time I will work hard to find my equilibrium. Please be patient with me. I'm finding it very hard to find the words to talk about this, so I may be reluctant to do so. I'm also completely unable to imagine managing other people's emotions, which is why I'm writing one long blog post and sharing it with everyone. Tim and the boys have been wonderful but I think we're all a little fragile right now. I'm feeling protective of them as well as of myself.

Yesterday, before leaving the office, my surgeon looked me right in the eyes and said, "We're going to fix this. Whatever it is, we'll fix it." I'm holding those words in my heart.

looks much worse than it is

On Saturday night, I was the victim of a freak knitting accident. Well, I wasn't actually knitting at the time, I was pulling a circular knitting needle out of a basket and the end sprung loose and hit me in the eye.

It stung like crazy when it happened but the pain soon went away. There was a little bit of blood but that stopped quickly, too. I called Telehealth, which was very reassuring but ignored their advice to go to Emergency. After consulting Dr. Google, I decided that there is no treatment and the wound will heal with time. And if the biggest risk is infection, I was not going to the ER to sit with a bunch of sick people for hours, only to be told I didn't really need to be there.

 

I saw my GP today, who reassured me that all will be well. My vision is fine, the wound is healing and I'm basically "very lucky". I could just as easily have poked the iris, which would have been a whole different story. She said emphatically that I made the right call re the ER and added "You have no idea how many people are sick right now. In fact, get out of here. And sanitize your hands on the way out. You don't know who was in here before you."

I posted the above photo on Facebook and much hilarity ensued. There were multiple references to "extreme knitting". One friend said, "It's all fun and games until someone loses an eye. I would like to watch you knit. It must be quite the workout." And the best: "Can't you take up a less dangerous hobby? Bungee jumping or cliff diving maybe?"

please read and remember

Geneviève Bergeron

Hélène Colgan

Nathalie Croteau

Barbara Daigneault

Anne-Marie Edward

Maud Haviernick

Maryse Laganière

Maryse Leclair

Anne-Marie Lemay

Sonia Pelletier

Michèle Richard

Annie St-Arneault

Annie Turcotte

Barbara Klucznik-Widajewicz

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.

#BlackLivesMatter

I don't write in this space very often these days and I don't know how many people still read my words. I'm not sure if I've done a good job of expressing myself. My friend made me realize last night that I have a responsibility to use the platform I have, to say something to anyone who might be willing to listen.

Yesterday evening, I sat down at the computer to check Twitter, as a stalling tactic before cleaning the kitchen. It was well past midnight when I stood up again.

I was reminded as soon as I logged in that the decision of the grand jury in Ferguson, Missouri - about whether or not to indict the police officer who killed a young unarmed black man - was due to come down shortly. In the end, it took a couple of hours for the announcement to be made. Though most people commenting in my Twitter feed were not surprised by the outcome (the delay in announcing had made many suspect that the result was a foregone conclusion), they were outraged. This was exacerbated by the terrible way in which the grand jury handled the release of the verdict: at night, with many hours of anticipation during which the world saw heavily armed soldiers and military tanks line the streets of the town. The lengthy speech made by the prosecutor seemed designed to fan the flames, as he first blamed social media and then further trashed the reputation of a young man who is no longer alive to defend himself.

Last night, I didn't comment much, choosing instead to share the words of others, mostly black women and men directly affected by this decision and overt and systemic racism. I felt it was my place to listen and to share their words. You can read all the Tweets I chose to share on my Twitter feed. There was so much more and I could not look away.

Eventually, though I had to go to bed. One of the last things I saw were the words of a black friend, saying that it's not enough for those of us with loads of white privilege to express solidarity. We need to do more.

She's right.

We need to do more because of what happened in Ferguson.

We need to do more because a 12 yearold black boy with a toy gun was shot by police officers in a neighbourhood park.

We need to do more because there are so many more stories like those I've just mentioned that don't even make the news.

We need to do more because racism is alive and well at home and around the world. And yes, that applies to those of us in Canada, too.

I'm still figuring out what “doing more” means for me. Here, to begin, are my own personal guidelines for dealing with racism in my world. I don't always succeed in adhering to them but I'm working on it:

Speak up when I see racism in my own community, city, country. Every time, even when it makes those around me uncomfortable.

Talk to my kids about what happened in Ferguson and about racism. Often. And not just when it results in someone's death.

Listen when others share their experiences. Ask how I can be supportive. Follow through.

Never be defensive or fearful when others raise the subject of race. Accept that when a person of colour says, “racism exists here”, “that is racist” or even “what you did was racist”, they are stating a fact that hopefully can be fixed and not saying that I'm an irredeemably horrible person.

I'm sure there's more. Like I said, I'm still figuring it out.

Every year, the adults on my spouse's side of the family make donations in each others' names instead of giving Christmas presents. In past years, we've donated to the Stephen Lewis Foundation, EGALE,  the Canadian Breast Cancer Network, the Ottawa Hospital Foundation and the Ottawa Food Bank. This year, I'd like to propose that my family direct our donations to those working to bring an end to racist inequality and injustice. I'd suggest that those of you who can, consider doing the same.

And if you have advice, as to where donations should be focused, please share. 

Further reading:

THE NATIONAL BAR ASSOCIATION RESPONDS TO THE GRAND JURY’S DECISION NOT TO INDICT POLICE OFFICER DARREN WILSON IN THE SHOOTING DEATH OF MICHAEL BROWN

Dear White Moms 

Justifying Homicide (why Darren Wilson was never going to be indicted for killing Michael Brown)

Ferguson isn’t about black rage against cops. It’s white rage against progress.

my living legacy

On October 1st (still playing catch up, bear with me), I had the privilege of being part of a lobby day organized by the Canadian Breast Cancer Network. Along with Niya Chari (CBCN's Government Relations Manager) and CBCN President Cathy Amandolea, I met with  Members of Parliament for the NDP, Liberals and Conservatives.

Specifically, we spoke of the need for greater awareness of metastatic breast cancer and funding and research needs, such as steering the focus away from early detection towards finding a cure. We addressed the fact that there is no centralized database of Canadian cancer statistics (we rely heavily on American data) and the need for a Metastatic Breast Cancer Awareness Day.

We ended the day with a reception on Parliament Hill that was attended by representatives of all political parties, despite being a very busy evening on the Hill. Daniel and Tim came too, which made me happiest of all.

A highlight of the evening was the video "Living Legacy" (pasted below). It's pretty powerful.



I was supposed to be a part of the video but I had to cancel at the last minute (I'll explain why another day). I think it's pretty complete without me. These women are incredible and just as impressive and lovely in person as they are on screen.

It was really hard to tell my story over and over. I wanted to do it though, because I know how much more effective it is to generate interests when people can attach a real person to an issue. For the most part, I really felt heard though. Cathy and Niya were brilliant and I think we did a good job getting our message across.

Metastatic breast cancer is often invisible, especially in October. This day meant a long way to making us be seen and heard.

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