Special Things

Today is a special day.

It’s the day I went into the office for a small gathering of friends to celebrate my time having worked together at Amnesty International. It’s also the day I get to finally start my new treatment approach.

And it’s very bright outside today, which makes it all the better.


Let me start with Amnesty. I do not write about work on this blog too often. I feel it’s something beyond the personal – and would be unprofessional to write about it in this space. But I can write about how lovely it is to belong somewhere, and I have really felt like I belonged in my role this past 1.5 years, and with this amazing organization. Truly it has changed who I am, how I see the world, and my knowledge in what kind of change people working together- grassroots upwards – can make.

But today was about the cheese and tea. Having finished work last week (I made the decision to leave my role as book club coordinator after Dr Canada gave Zsolt that ‘expect the worst’ talk, and things wrapped up last week.)… having finished work last week, some friends at the organization threw me a little tea party this week. I just had to show up and enjoy! There was tea (we tried some plum, some cinnamon, and a hibiscus) and variety of cheeses, as well as crackers and gluten free baked goods from the market, plus most importantly: Good Company.

Sitting around chatting reminds me that it’s just essential to connect. Social media and such is fine and well, but a nice table with some china and chatter – it’s the essential stuff. It’s where the calm and laughter really live. It’s where you realize how much you have in common, and how much you have to learn. I hope as time moves forward, I can continue to seek out meaningful moments like the ladies gave me today.

Today is also a special day because of the new treatment. Oh, stage four and treatments – one comes after the other until the doctor says ‘that’s it!’ and it’s a very hard situation. But sometimes moments of hope appear, and whatever kind of opportunity they offer – another month, another year, another study, another approach – they are meaningful.

With the cancer all over my lungs, liver, bones and in my brain, the picture is not pretty. But at least today I’ve been able to start a new treatment course. The radiation has zapped the spots in my brain, and maybe this medication will help kill any bits remaining in there. If so, maybe then I can get onto a clinical trial and attempt a different approach for battling back the disease. Fingers crossed for a virus study.

But we’ve had to wait about 3 months before I could get this medicine. It’s called Tykerb, and it’s a HER2 drug that apparently can cross the blood brain barrier, whereas other approaches cannot. It’s also about 5000$/month if you are not covered by the province or insurance. Guess who isn’t covered?

However, through a series of fortunate events, persistence and compassion it has become accessible to me. I won’t give details because it’s not my place to do so. But we get to try it, and that is so very good. Like I say, who knows whether it will work, and even if it does, who knows how long it will last – with me, things seem to move on quickly from working to not working, but it’s nevertheless a gift of hope. I get to try.

I get to try. And that matters very much.

I’m also back on chemo. This time it is a pill. This is fine, it’s part of the treatment. Though it’s also a bit hard to swallow in that …I already weigh nothing. My energy is so depleted.  My appetite was never great. Ahhhh.

But who knows? Maybe it will help push back the cancer in my lungs, so I can breath better. And maybe it will reduce the discomfort of the bones. And maybe I’ll be able to rebuild some muscle mass? All these things would be lovely.

In the meanwhile, I had a fun conversation today with the ladies at work about movies that impacted our lives. Some that came up: Garden State (my movie choice), Amelie, Reality Bites, Bridget Jones, Dirty Dancing and more. And in that vein, here is one more: Beauty and the Beast. One of the first characters that I really, really wanted to identify with. Headstrong, smart, beautiful, adventurous, and a reader! Disney is redoing the film with Emma Watson. Here is the trailer.  Tingles!

P.S. I am writing a lot lately. It’s a coping mechanism. I hope I am not overwhelming your news feed or email. Feel most welcome to ignore me. 🙂

P.P.S. Did anyone catch that emergency debate on the USA’s decision regarding refugee travel and how Canada should respond? Very insightful, I thought….very interesting how each MP approached the issue. Much of it disappointing (self-congratulations of a country, avoidance of issue through excessive storytelling, platform pushing), but some of it quite good (acknowledging Canada has failed to support refugees in the past, pushing for some form of commitment on how we can help now, direct language and direct responses, etc.)

P.P.P.S I’ve got nothing to add here – just didn’t want to end on politics.


Cyber Knife in Ottawa

Lately I don’t write much about treatment experiences. This is because the blog has simply evolved beyond that. Back when I was first diagnosed, I was all over chronicling what it is like to have a mastectomy or chemotherapy or radiotherapy or IV C or alternative therapies.

But now, well – chemo is chemo; radiation is radiation; and complementary therapies are very complimentary. My daily life involves dealing with these things. And a million phone calls to the hospital and other services. None of this feels remarkable anymore.

However, cyberknife is pretty cool, I gotta say. And the fact that we have it here in Ottawa is excellent. We’re a very lucky city.

One of the first questions the cyber knife technician asked me in passing conversation was, “So did you come from out of town?” because this is a service not available everywhere. I think cyberknife didn’t arrive in Ottawa until about 2010 or something. The Ottawa Hospital Foundation fundraised 3.5 million from awesome donors to bring this to Canada’s capital.

While I cannot tell you everything about it, I can try to relate what I’ve experienced here, because I want to express my gratitude for being able to access this service. And for once, I don’t want to complain about the hospital. J (Because really I am grateful for everything. It just gets to be too much at times and I need to vent.)

Cyber knife does feel to different from radiation in general: there is a table you lay in. You go in for X amount of sessions (fewer in general, I think) and then you leave to deal with the side effects later. But it is different – significantly so. Rather than targeting a whole wide area of your body, the cyber knife – or sterotactic my radiation doctor has called it – is more like a precise surgery, using hundreds of radiation beams.

So I rock up to the appointment last week ready to roll. Nervous as heck, but ready to roll. I have my water bottle, slippers, butt pad, DVD selection (Fantasia mostly, for last week) and sweater. While normal radiation takes minutes, cyber knife takes longer. It’s so very precise, they need to line things up quite carefully.

I give them my DVD and ask if I can have a blanket put over me.

(Now, I’m not sure whether all cyberknife places have giant flat screens on the ceiling above the treatment table. But they should! In my opinion, television is better distraction than the Ambien they offered me. Watching Fantasia chilled me right out.)

Shout out to Laurie at Not Just About Cancer for letting me know there was a DVD player in the room!

The folks are quite efficient. I barely have a chance to even look at the machine before my face mask is clamped over my head. It makes me wonder if everyone getting this treatment has a different kind off mask – body mask, leg mask, etc…because the ‘surgery’ is so precise, they really do need to ensure things are lined up properly.

Anyhow, then the interesting stuff starts to happen. Frankly, I try  not to focus upon it. It’s interesting in a freaky way. There is this big white arm with a laser on it that reminds me a bit of HAL of A Space Odyssey, in that it reminds me of an eye, and a robot. So HAL the radiation robot moves around me here and there and there and here. It does this for quite some time. Sometimes I hear it shooting out the bursts of radiation, sometimes not. But on and on it goes.

Meanwhile I lay on the table and watch the movie. I’m allowed to take breaks if needed, and I do. It’s no big deal. Every time HAL moves into my view I close my eyes, because I don’t want to look at him. And then peek my eyes open to see if he has left my field of view.

This goes on, and then it is done.

It is okay. Long. Not comfortable due to my worsening hip…but okay.

Until the DVD stops….and then I get very jumpy. But thankfully with a wave of my hand the techs come in and quickly change up the entertainment, and I can disappear again into another film or show.

Like other radiation, it can apparently cause burning and itching and hair loss (and they hair may or may not grow back). Short terms side effects apparently last a week. Long term side effects…well, we will see.

Overall the goal here is to get my brain a bit under control. This is no cure – the cancer is now in the brain tissue, and that is a big problem. But it is a method of controlling the impact of the cancer. It’s really having an impact on my cognitive abilities. I simply cannot process quickly, and my left side of many things feel a bit behind my right side.

And then there is the rest of my body … but I won’t digress into a pool of pity. Not for the moment. Maybe later. I am doing what I can.

We’ll see how this goes.

One step at a time.

And that is just a little bit about cyber knife. It is doable. And better if you can bring in something to distract you during treatment. If no DVD, then music is a must.



A Manifestation of Love

During the day I get sweeping, gushing feelings of exhaustion, which essentially force me into the bed for a rest. But while I rest, I also think. And it’s quite nice to do.

This past holiday season – between Christmas and New Years, I did something very important: I re-watched for the umpteenth time Pride and Prejudice with my mother. The BBC version. The best of versions. She and I have watched it so many times. Countless times. There’s no one else I’d rather watch it with, and frankly it’s not half as good if I watch it without her.

So, we make our cups of tea and sometimes there’s a small plate of cookies. Then, we climb onto what is the most enormous bed ever, being a king-sized bed, with a gorgeously thick duvet cover, and settle in for a little bit of viewing. It’s not all watched at once, because it is quite long, so when we embark on watching Pride and Prejudice, I have  the additional please of knowing that there will be several sessions of tea, cookies, bed and viewings.

She may have her knitting, and I may have my phone. But mostly I think we have each other and the company of the Bennet Family. Because inevitably as we watching the show, we will end up holding hands and laughing at whatever witty thing just happened on the screen.

I love Pride and Prejudice, but even more I love holding hands with my mom. I love that space and time of being together. This is probably literally the first time I’ve mentioned the  action ‘aloud’ but there you have  it. It’s unspoken, and feels perfectly natural. It didn’t always happen, since growing up I wasn’t so into ‘touching other people’ – but living in a different country for a while from one’s family can make one more sentimental….and it carries on from there.

Anyhow, I really value my relationship with my mother. And I value those little moments. And I value that we get each other in a way that never needs exploration.

So I’m lying in bed ‘napping’ but really thinking about all of this, which makes me think a little further. My mom and I are close, in an unspoken way. It’s very hard to describe beyond Mom and Daughter – close friendship doesn’t capture it enough. But I think that scene in the bed does. So what about my other extremely important relationships? How are they best captured?

Well Zsolt and I… I mean… it’s captured every day in every moment. He is my husband, I am his wife, and we are for one other. So I’ll just leave it there because I think that is saying enough and frankly it’s all too big to hold in words on this blog. It’s like the intangible relationship with my mom, but so unique to itself.

My Dad and I – that is such an easy one. Our moment, I feel comes in two ways. One is simply the way we exchange. I’ve blogged about this before. The ‘he gets me every time’ and the ‘I get him right back with a zing’. I’m not sure he loves this arrangement, but it’s a dynamic that is more about love and habit than it is about anything else. And then the other way, the smaller moment of a hug or a smile. This is new for me because, like I mentioned, I don’t much love being touched. But in some moments, some important moments, a hug is okay.

And then that unique relationship with my brothers. It’s so different than my parents  or husband or best of friends. It’s not so sentimental, but … but maybe it is?

Big brother little sister – What moment or gesture marks its meaning? I think, of late, it has been his kindness and support. He loves to push – all his life he has pushed, and in his adulthood he’s harnessed that into the power of pushing people to live well. I, however, don’t love to be pushed. Ha! Not at all. So we find our medium ground. But more than that – beyond how he makes me juice and reminds me I should exercise… the real bottom line is we’ve learned how to support one another. Supporter and supported in turn, as needed, in different ways that life poses challenges.

At least, I think so. It’s kind of a new one for me to consider.

And then big sister little brother. I really am not sure the marker for love here – except that I care for  that guy like crazy. Like nutso.  Like bonkers. Growing up he was literally at times my closest friend, but probably too young to understand that, I think. In adulthood we have our own lives, but still these occasional wonderful moments. The other day he surprised me as he and his girlfriend took me out to see The Gift of Lights here in Ottawa. It’s a camp ground that was covered in Christmas light displays, and you drive through slowly and it’s quite surreal. Well we put on Pink Floyd and it was fantastic. How can you not love an evening like that? We even hit up my parents’ hot tub in Kanata afterwards. It felt like being a teenager again.

And then there are my closest friends. What moments make those relationships? The conversations, I think, more than the individual actions. The chance to exchange on ideas that are either about life, or culture, or just picking things to pieces and better understanding the world. God I love doing that over a cup off tea. Maybe they can best be represented by cups of tea 🙂

Anyhow, when I stop and think about it, there are so many kinds of very important relationships in my life. It’s quite fascinating how they are all so different in function and form, but bottom line all so very much filled with love.

Next, I hope to watch Anne of Green Gables with my mother. It’s a much longer series, produced by TVO (I think?) and a great classic. I have not watched it 1000 times before, but maybe 500 times. So, this is something to look forward to once again. And those cookies. Geez, my parents make amazing  cookies.