Purposefully Posting

This body of mine is keeping me awake again. But that’s not news. That’s every night around 3:30 AM-5AM or 4:30AM-6AM or 1:30AM-3AM. As far as insomnia goes, it is very reasonable and probably not insomnia at all.

But still, it helps if I write.

Therefore, I am writing.

Today I received a lovely bouquet from work. A thank you for everything kind of bouquet. It’s with white hydrangeas and pink roses and white lilies that are all cast against these large, wide folds of dark green leaves. Very pretty. It arrived via the delivery person and was a great surprise. Notably it was not a bouquet about my health, but instead about my contribution.

And yet still slightly bittersweet to receive, of course.

The past few days have been strange for me. Listless. With the impact of radiation being felt, I’m tired. Justttttt so tired. And yet not tired. Jusssssst so not tired. There are things I’d like to do, but have no drive to get done. My mind says yes, the body screams no.

Patience is a virtue in these situations, I suppose. But at the same time, I feel like I’m missing my window.

There are these windows when living despite cancer. Windows of opportunity that are between treatment and scans. When I do not need to visit the hospital 3 x in a week, and do a follow up the week after, and get treatments. There are these golden windows when life should be seized BY THE BALLS. Yeah, I just typed that – for realz.

Right now is that window of time. Except I literally just abandoned one of my life-balls-grabbing outlets, being my job. My amazing dream-come-true job. It’s bobbing away from me in the stream of life. The purposeful side of me is like, “WHAT IS NEXT?” and the reality side of me is like “YOUR NAP!”

But life despite cancer means pushing beyond the nap (or between them). I’ve been inspired by many an  amazing lady in the metastatic cancer world to know it’s essential. And it’s always just been a core value of how I’d like to define myself. Please, as I have said before, never say I lost a battle against a disease – should it come to my passing one day – instead, say I live the fuck outta life. Because if life isn’t about more than this body, then what’s the point of anything?

What is next then?

More writing? More art? More social media exploration? More travel? More ‘I haven’t discovered it yet, but will let you know when I do’? Probably all the above in small, manageable doses.

I suppose at now 6:00 AM in the morning, it means more sleep. For now.

And then ultimately a search for purpose. A new purpose. The last 1.5 years has been for Amnesty. Before that, for my writing. And now… we will see. Once again, it’s time to redefine what I am through what I do. I see everyone around me working with intensity … and my instinct is to join in with a passion. Therefore, I must find a spark – however long or short it is to last (spark may be short lived, but if it catches, it burns!)

And I must be more forgiving to my body. We are one unit, even if I would rather pretend that isn’t the case when the pain flares or sleep calls . . . but we are one unit, for now, and care needs to be given there too. Compassion, perhaps is an even better word.

So long as boredom doesn’t creep in too deeply.

Anyhow, so the journey of who I am begins again.

With the receiving of flowers, it is time to start a new path.




And go back to bed.

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.



Can you tell me a story?

For the past several years around my birthday I’ve had a thought. It goes something like, what impact have I made in this world? And with that thought, I almost had the courage to ask people if I left any impression upon their life, or just had a nice moment where we laughed together, or helped them without realizing it (or remembering it) or just did good in some way for them, or maybe just share a moment that sticks out in one’s mind for no good reason.

And then I chicken out. Maybe because we’re not supposed to ask those kinds of questions? I don’t know.

But why do I have to wait until I’m a ghost at my funeral haunting the egg sandwiches to hear a story people remember about me? Why? No reason!

So even though it isn’t my birthday. And even though I am NOT dying tomorrow… I would like to ask:

Can you please tell me a story?

Was there a moment between us you remember – big or little? Did I ever help you when you needed it? Did I make any kind of impact on your life? Or say something that stuck? Did I ever make you laugh? Or did I do something wonderfully stupid? I’d like to know. I’d like to know what the day was like, and how you were feeling, and what we looked like back then, and why we were there together, and what happened. I’d like to hear a tiny story. 🙂

And yes, I realize that there are plenty of stories where I fucked up and hurt people too. The ones I know of, I think about still. The ones I don’t, well I guess I don’t. And if you feel the need to tell that story, I get it. But don’t, please. Yes, this is a very selfish post, I agree.

If you have a story, you can leave it here in the comments or on my facebook page. If you don’t, that is a-okay too. I don’t know what to expect. Crickets? Nothing? A little, maybe. I know many of you are not commenters. But if you feel like trying, I feel like reading.

Thank you so much. Please consider your story an awesome gift to me.