Friday, November 27, 2015

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,

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.

Wednesday, October 14, 2015

i'm aware. are you?

Circulating on Facebook, posted by the late Lisa Bonchek Adams

Yesterday was Metastic Breast Cancer Awareness Day. This is official in the United States but not in Canada. 

I should have written about this yesterday but I was busy getting treatment, which I do every 4 weeks and will continue to do until it stops working. 

Despite a liver that once had "more tumours than you can count" and two brain malignant brain tumours, I have been very, very lucky. As per the graphic above, the median survival of someone with a diagnoses of metastasis is three years. It has been almost 10 years since my original diagnoses and 9 since I learned I have mets.

This October, as we are awash in a sea of pink, I ask you not to go bra-less on my account, get cutesy about where you leave your purse and I don't want to know the colour of your bra, if you are wearing one. And please don't buy pink crap or anything just because it is festooned with a pink ribbon.

Inform yourself for real. Educate others. Donate if you can, to where you money will go the farthest.

In the United States there is Metavivor and the Metastatic Breast Cancer Network. 

In Canada, we have no group devoted exclusively to metastasis but the Canadian Breast Cancer Network has taken on a strong advocacy role and outreach role.

Thursday, October 08, 2015

the myth of early detection

This is a link to an excellent article in Psychology today. It addresses the myth of early detection. I know it is comforting to believe that if you catch cancer early you can prevent it but that's not how it works. It's such a fraught notion that it can be hard to explain. This article does it well. 

The greatest myth serving the early detection belief system is that breast cancer is a single, homogeneous disease that always behaves in the same way, progressing from early to late to lethal (stage 0, 1, 2, 3, 4). From this linear perspective, catching breast cancer "early" suggests that the cancer can be nipped in the bud, stopped in its tracks, prevented from progressing to a lethal stage. A cancer stage, however, is not a point in a definite progression.

Thursday, October 01, 2015

it's october!

I'm fine and I know I owe an update but I could't let this month pass without sharing some the best that's out there when it comes to writing about pink ribbons.

To begin, here's one from Breast Cancer Action (thanks to Kate for drawing my attention to this one).

The post is by Jeanette Koncikowski. Here's an excerpt. 

"When I start talking about my concerns about the pink ribbon, people often ask me what my problem is (not in that seriously inquisitive kinda way, but in the seriously, you are taking issue with THIS?! kinda way). They equate questioning this symbol with a lack of support for women living with and who have died from breast cancer. My problem is that pink is a color and not a cure. The pink ribbon has been corrupted. Corporations, not community, have become the primary promoters of the pink ribbon. Corporations are exploiting our collective generosity and concern for breast cancer patients to make a profit. Many of these companies are not transparent about which breast cancer charities or research, if any, are benefiting from our purchases.  Other companies are pinkwashing, claiming to care about breast cancer (often evidenced by placing a pink ribbon on a product) even though their product actually increases a woman’s risk of breast cancer! There are also countless pink ribbon promotions that degrade women by objectifying their breasts and bodies. Campaigns focusing on saving the boobies, the ta-tas, and second base send the message to women with breast cancer that saving your breasts is more important than saving your life." 
The first sentence of the paragraph of above really resonates with me. Most people who buy pink ribbon stuff just want to show there support. I really don't want to diminish that. It's just that there are better ways of doing that and the author does a pretty good job of explaining why.

There is so much more awareness about Pinktober and pinkwashing than there was when I first started thinking about these things in 2006. Is there any good writing you'd like to share? Please post links in the comments section!

Sunday, June 28, 2015

update on the fly

I am finally feeling like myself again. I realized that today, in fact, despite the fact that I have a cold, gifted to me by my children.

Since I last wrote, I had a wonderful week in Florida. I then attended my son's Grade 6 "leaving ceremony" and had treatment.

Today was spent attempting to get ready for a little family vacation. There is so much catching up to do that it seems a little silly to be going away but it will be good for us.

The neurosurgeon says all is well. No heavy lifting or dyeing my hair for three months. My head still hurts enough to need Tylenol a couple of times a day. I have an MRI at the end of August.

I rode my bike to an appointment this week. It was just four minutes away but I forgot my lock so I had to come and go twice. It felt really good.

This week will involve some long walks. Maybe I'll even start running again. 

I need to talk to my oncologist about what might come next. I need to stop worrying about what might come next.

I need to enjoy the normal.

Monday, June 08, 2015

others' eloquent voices

I was actually doing much better between when I blogged last time and when I went in for CyberKnife radiation last Thursday. I was walking and eating (and had even been out for dinner once and gone to book club). I was still needing to rest a lot but I could see the improvement in every day. And that was heartening.

CyberKnife was a major setback. I remember that it was last time, too (so much so that I never really wrote about it - just wanted to move on). That's just how it goes for me, I guess. I had brain swelling, headache, nausea, loss of balance, fatigue (yet little sleep) and a very odd taste in my mouth.I still do. But the light is at the end of the tunnel (I think it took a week last time and it was been 4 days) and I will soon be able to concentrate - and to live again. I know it.

Meanwhile, yesterday was "National Cancer Survivor's Day" in the US (and supposedly around the world, including in Canada). I missed it but lots of people with mets and who post about mets did. Here are three good ones. These are particularly eloquent. Something to think about.

National Cancer Survivors Day® & Why I’m Just Not that Into It (by Nancy Stordahl at Nancy's Point) 

Not a Survivor (by the Cancer Curmudgoen at The Cult of Perfect Motherhood)

The Trouble with "Survivor" and the Lack of Boundaries (by Susanne at Metathriving: the blog) 

Friday, May 22, 2015

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.