Wednesday, March 25, 2015

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.

Friday, March 13, 2015

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.

Monday, January 05, 2015

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?"


Saturday, December 06, 2014

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

Monday, December 01, 2014

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.





Tuesday, November 25, 2014

#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:






Tuesday, November 04, 2014

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.