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.

 

Going to Bed

10:00 PM.

C: Zsolt, when are you coming to bed?

Z: It’s only 10:00 PM!

10:30 PM

C: Zsolt when are you coming to bed?

Z: Soon.

C: Come soon, I’m sleepy.

11:00 PM.

C: Night.

Z: Night.

*click goes the light*

11:10 PM

C: I’m having a hot flash.

Z: …

11:15 PM

C: Zsolt?

Z: Yes.

C: Is everything okay?

Z: Everything is okay.

C: What about [enter nearest problem on my mind]?

Z: That is okay too. We’re both okay.

C: Alright.

11:20 PM.

C: What do you think about ice cream? I haven’t had ice cream in a long time. It’s been years already – I think about 2 years, except that one time with that xylitol stuff. Which was good, but I still felt guilty eating it – it was too sweet. I think I miss Balaton. Sometimes when I think of it, I picture out our on that surf board in the morning, looking at the water.

Z: That was nice.

C: Yep.

Z: The fish were big.

11:30 PM

C: Zsolt?

Z: Hmm?

C: Wouldn’t it be awesome if the chemo and treatment knock the cancer back into remission?

Z: Yes.

C: Mission remission.

Z: Mission remission.

11:40 PM

C: Ow!

Z: What is it?!

C: Back spasm. I’m getting an ice pack.

*sound of shuffling bare feet on a too-cold floor. Flash of light from the freezer. Footsteps return.

C: Damn.

Z: What?

C: I forgot the tea towel.

*again, sound of shuffling footsteps.

11:50 PM

Catherine kicks at her blankets, then flips to the other end of the bed. She then does a half-asleep yoga-like stretching pose.

Z: You okay?

C: I’m not going to sleep tonight.

Z: You say that every night, and then you sleep.

C: True.

12:00 AM.

C: Zsolt?

Z: Yeah?

C: Nothing.

Z: Are you sure?

C: I guess so. I just can’t stop worrying.

Z: Tell me what you’re worrying about.

Catherine proceeds to list everything she is worrying about. Zsolt then talks her through them one by one.

 

12:10

Z: Babe?

C: Yes?

Z: Good night.

C: Good night.

Z: I love you.

C: I love you too.

 

And how can you not love a man who never, ever complains – no matter how many times you wake him up?