Chemo Eve Eve

My friends do this thing each year called Christmas Eve Eve – when everyone gathers at a bar/pub to have some drinks and just pause for a good time. It’s nice and I’ve loved going.

Well, tonight is my ‘chemo eve eve’. It’s far less jolly and eventful than Christmas celebrations – however, I did paint my nails this evening, which was an adventure. With my eyes being so messed up, trying to focus upon the thickness of the polish upon my nails was rather different. Things a few feet away aren’t so hard, but those very close up details do challenge me. The entire time I was working that paint brush with my cutiicles, I was narrating to Zsolt: “Can’t clearly see what I’m doing, but it’s going on. Oh! All over the finger. Okay, now for the other hand!”

It may have helped if it the room hadn’t been so dim. My Dad always says “don’t curse the darkness, turn on a light.” But as I was only cursing the nail polish, I forgot all about the lights.

But hey, this was the best part of my evening, and I was revelling in the ridiculousness. My nails are now a very dark blue/green, and they look like someone painted them with a translucent blindfold on. Which is somewhat true, at least in the case of my left eye.

ImNotGrumpy

new hair cut, pre-nail-painting

So chemo starts very soon. Chemo and the magic key to remission: HER2+ targeted drugs. I am both dreading the chemo side effects, and looking forward to getting the cancer under control. It has truly had its way with me these past few months. Unfortunately I now have spots alongside both eyes, and – ugh – in that layer between the skull and the brain. So pretty much skirting the brain, though perhaps technically in the brain. But at least it’s not in the essential tissue … and I would like to avoid any ‘yet’ with that statement, and just say we’ll radiate the heck out of them and blast them away. Or so I pray. Brain is bad bad bad news.

But eye on the prize – we’ll do chemo, and then at the same time, radiation. I don’t know if it will be a targeted radiation treatment or full brain. The lovely doctor I spoke with today said he needs to consult with a few other doctors first. Either way, it will make painting my nails in dim lighting with one wonky eye look like a total cakewalk. (Karen, next time I’ll give you a call!)

Here is a nice story, and it’s also why I think I will do much better this time around than 5 years ago when first diagnosis. Everyone I love is here. My husband is beside me, and my family are here for me, and my friends are never too far away either, even when I’m too tired to do anything but think of them. :) Just this past weekend, my mom broke out the flip chart board, and my entire family brainstormed ways to help support me in beating back the cancer – getting to that golden word ‘remission’ (officially my new favourite word. I like it even more than ‘butter’ and ‘delicious’). This family gathering was the most touching thing you could see. And then, after all that brainstorming, we made a picture board together. :)

Mission remission. Get this damn cancer under control! I’m going big, because there’s no choice for going home – except if you are speaking literally, but let’s not muddy that up. I want the cancer gone. gone, gone, gone. May this Chemo eve eve mark the moment when everything starts going right. It needn’t be a shitty day – but instead a day that tips the scales, and gives my body the chance needed to regain control. Let’s pray on that, if you dig prayer. Otherwise maybe you can just nod your head and think: go for it.

Cheers to getting better. And to family. And to dark nail polish. And – oh! To a cute new pixie cut. It may only last a week, but at least that’s one week when I can rock this new look. (I may look a bit grumpy in this picture, but really I’m just exhausted. Cancer is exhausting.)

And now, it’s time for bed.

:P

Back to Bed

So now it’s Sunday, and as predicted I am in bed resting. There has been some glorious napping today, as reward for all that ridiculous advocating yesterday and Friday evening.

As it turns out, my eye is fine. There is more to do, but at least my eye is fine. (vision not so much). My MRI has been hurried up, as I think it should have always been, so that is a win too. And the nose bleed has calmed down. Next week I visit with my oncologist, and we start to get the treatment going.

Time to take care of this cancer bull shit and reclaim my body.

In the meanwhile, I went to Winterlude today with some excellent people – being my two brothers and their partners. We walked/skated the canal, sipped hot drinks, then went over to the ice sculptures. It was freaking ZERO degrees in the city, which is bizarrely warm. So, by the fate of a few texts send by my bros, we caught the beautiful ice sculptures before they began to melt away.

Winterlude

And now I’m home in bed and have been napping like crazy. NAP-attacked. My brain needed it. This evening I think we’ll order some Butter chicken and onion bahji from Havali’s because it’s yummy and my new form of comfort food. Then I’ll go to sleep, and start a fresh page on life tomorrow.

The eye continues to bug me – my left has some very hazy vision issues so it’s truly odd to look at things up close, particularly books or computer screens. But at least I know that as we move forward and treat the issue this can be, in time, resolved.

Not such an easy road ahead, but finally we’re starting in the right direction. There were a few moments this weekend when I remembered my need to advocate even though I truly hate it, and so I kept asking questions – but even more importantly, kept going back I until I had the answers I needed.

No wonder I’m napping all day today – minus the Winterlude good times.

And that is all. Everything is okay. And now I’m going to have some hot chocolate, and then SLEEP MORE.

 

Advocacy Avoidance

Sitting here on a train that is somewhere between Ottawa and Toronto, quietly cursing myself for putting off this so long. After a couple trips to different eye doctors – one at a private clinic, the other within the hospital, and having been sent home both times with the sentiment, ‘we don’t see anything’ I have become a self-doubter. Also after a couple calls to the hospital about when my MRI will be, and why is it being put off till April – with one not-so-happy response, and then another with simply no response at all. . . my inhibitions kicked in, and I just plain shut up about it.

I thought it would be okay to wait till next week during my doctor visit to bring things up. I thought my eye would be okay.

Except now the left eye is blurred and shadowy and flashing. Not a good thing. I’m really such a jackass for not doing something about this earlier in the week. Somehow I figured it would be okay.

Anyhow, so here I am on the train from Toronto to Ottawa, following a week of conference and meetings and work stuff . . . and kinda falling apart emotionally. Just kinda, because I’m not breaking down. So – that’s simply ‘kinda’.

We’ll arrive in Ottawa and meet my parents at the train station. They’ll give us a ride to the emergency room. I’ll ask them to take a look of my left eye and help fix this problem, if it can still be fixed. And meanwhile my nose has been bleeding for most of the train ride – and there are freight cars ahead of us making this train delayed by an hour – therefore I won’t get to Ottawa till 9:30 pm.

Next week I’m supposed to be setting up for chemotherapy. They found a marker in the cancer that is HER2+, which is good only because there are targeted therapies for this kind of cancer. The plan is to blast away the cancer by coupling the HER2+ treatment with chemotherapy.

yay.

No, it’s actually: YAY!

But still. Chemo. Ugh. Terrible stuff.

A part of me is scared it’s too little too late. Life feels normal despite the cancer, until you can’t sleep from back pain, or until the spot in your eye starts growing rapidly, or until your nose won’t quit bleeding, or until your damn lung decides to collapse in the middle of the night. (Until you throw a hissy fit on a VIA rail train.)

I’m a jackass because I didn’t push when I knew things needed to be pushed. I just stepped back after a couple attempts and said, ‘Okay I’ll wait’ – except waiting when I know there is a problem is doing me zero favours.

Part of this whole ‘dealing with cancer’ business is being an advocate. And sometime, I guess that means not caring that you are potentially bothering others.

All my life I’ve felt I was bothering others! I’d literally not call my friends in fear that I would be taking up their time unnecessarily. So when it comes to taking up a doctor’s time with repeated requests for a speedier MRI or hospital appointment arranging . . . auuuuugggghhh.

And then there’s just plain denial. That is my responsibility, and my comfort blanket (until it’s really not so comfortable anymore). I have put off getting this eye thing checked AGAIN because it’s actually easier to do nothing. Every time I do something is takes a whopping load of effort and determination. The idea of having to repeat advocacy moments over and over and over until answers are found is just so . . .

It is just so very necessary.

I don’t like it. But it is necessary.

Anyhow, this train is late. My nose is still bleeding. My eye sight is like looking through a glass of beer. The seat is pretty cozy. And it’s quiet in the car. Out the window there is darkness, with the occasional pockets of streetlights and cities. I am okay. I’m not in pain. This will be dealt with.

I will go to the emergency room, and I will advocate for myself again.

And then, probably sometime tomorrow or Sunday, I’ll crawl into bed and turn on the Netflix, and hide from the world like I so love to do.