Distortion

As I am nearing this 5th cycle of chemotherapy, things are definitely becoming more challenging. And one really striking oddity is my general perception of stuff. Stuff like the way the world feels. If that isn’t vague enough, I mean my brain space. I’m spacey.

Maybe it’s from the full head radiation (very likely), but also from the cancer in my eyes, things are so very spacey lately. Just last week I had a temperature, and during that time it was quite hard to figure out depth – things were further or nearer or just plain incomprehensible. I found myself clinging to the wall as I walked, willing myself to figure out how to walk straight again. How to make my head stop spinning. It did stop spinning as my temperature went slowly back to normal, but that lasted several days and I still get the wobbles when I walk.

So I was well confused this week when I woke up in the middle of the night whacked out of my head. Like so gone. For the very first time in my life.

You see it’s been hard to eat. I just don’t really want to eat anything. And so I lose weight. Plus I was becoming rather nauseous with a bit of upchucking, so losing more weight. Anyhow, in an attempt to deal with this, I am – or was – trying a little bit of a special ‘medical herbal’ oil, if you know what I mean. I’m not down with this typically; like my entire life I’m all noooooo thanks. But somehow when you have cancer that could kill you if you don’t beat it back, you become willing to try a bit more.

So I was taking the tiniest bit of this stuff, just to see if it would help me eat and not get sick. I didn’t feel anything, to be honest. That was fine. But then I was told – take more, you should feel something. So I was like, fine. And I took more. Still, I felt nothing . . .

Until about 11:30 at night, when I woke up after rolling over, and was like

WHAT THE FUDGE?!

I thought my head was a giant gingerbread man – big ,flat, circular, and ginger, I guess. (with icing eyes) And I wasn’t sure if I was stuck in a dream, except I was pretty sure it was real as I was talking with Zsolt. AND I wasn’t sure if my distortion had returned in full hurricane force, and that’s why everything felt crazy.

It was a bit of a tip off that just the sight of my husband was tripping me out. I literally could not bring myself to look straight at him. It was too crazy.

It was not fun. But, I was interesting. And it became hilarious when I turned on my phone.

Ever heard of Snapchat? I do this sometimes and send videos or pictures to others during the day. Or night, in the case of my 11:30 surprise.

So I opened Snapchat to give some people hell. Except I can’t! I can’t do it – My angry words dissipate into the air and are replaced by random thoughts about flowers, and then bursts of laughter. I try again! “You did this to……HAHAHA!” And that is all I’ve got before the snap timer runs out.

Then I get my husband to take my temperature, because maybe I’m having a fever again – so in goes the electronic themerometer – and I watch the numbers crawl upward and whip it out at 36.2 saying that is a great temperature. Not my temperature, because it wasn’t done calculating, but a great one nevertheless.

And I just laugh more. And feel terrible. I felt both terrible and hilarious at once, it that makes any sense. Mostly terrible, to be honest.

And I remember that I could not get enough water. I drank about 3 cups in a row. . .  and then felt really, really full – except the fullness was in competition with thirst. And that full feeling seemed very far away. As did the washroom . . .

Eventually we decided it might just be best to sleep. So we turned off the lights, and I sang “I can show you the world” from Aladin to myself in an attempt to fly.

Wow, so I’ll not be doing that again. Seriously, if I want the world to go sideways I’ll just run a temperature and get more radiation.

But I can see the laughter appeal. Laughing is such a special thing. Lately I’m quite stuck between neither laughing nor crying, though wishing I could just let it go and cry like a baby or laugh like an idiot. There are so many feelings I am having, from hope to desperation to fatigue to relief to trepidation . ..  so many, and not enough opportunities where my body actually finds the outlet to release things.

So the good thing is that I laughed.

And hopefully in time this distortion will settle down. I don’t mean the herbs, I mean my brain. I hope it calms down soon so I can feel normal. Normal is a really nice feeling. I like normal.

The end.

Map of Naps

I’m going to try going to work this week. Not going but working. ‘go’ in a virtual sense. Also going to find out the new plan on tackling the distortion in my eyes, and get results on other things. Bah! I handle none of this with grace. Rather, I handle it through pajama pants and hooded sweatshirts.

It will be quite nice to start working! There are a few things on my mind about how my job is ticking along, and I’d really like to follow them up. Now I can finally quench that curiosity. This makes me feel pretty stellar.

map of naps

The only thing is, my energy has a way of tanking quite rapidly. The body requires several small naps a day, otherwise I hit the ground like a . . . rock. Yes, like a rock.

We’ve been on and off staying with my parents (largely on) and they have been incredible in helping us get through the treatments. Incredible. My whole family has been so supportive, and it touches me quite a bit. While we had great support in England, there’s no one like family when it comes to actually asking for help. I’m far less embarrassed. And when it comes to my mom, she is a great advocate in helping me spell out exactly what is needed. 🙂

Part of the results will be to see how my skull and brain are doing. Of course I’m nervous. There is good reason to be nervous. But this is treatment time, so whatever is happening will hopefully be treated. Treated so we can move forward.

One really nice thing I’ve literally noticed only while typing the blog post is my use of double letters. There was a tumour developing between my skull and brain, and I think my typing was giving away a sign of this. Essentially it became quite difficult for me to type without using double letters. Every other sentence I’d use an incorrect double letter. Like this:

Actually Actually Acctually acctually acctually actually actually acctually actually

Like that.

That is me typing the word actually several times in a row without correcting myself. I cannot stop doing the double ‘c’.

However, despite the word ‘actually’ remaining a challenge. I did just type about 200 words in a row without any doubles. Not bad. Believe me, this is serious progress. Maybe it means things are improving in my  head. I hope so.

With results upcoming, I like to take the little signs of progress to heart. It’s important because it’s alsso (Damn!) quite terrifying.  This is not a small deal.

However, in the meanwhile as I go to work and appointments and results and such, there are always the naps. Sweet, wonderful naps.

The End.

Anticipation

All I really want to do is look at beautiful things (like spring) and talk with wonderful people. I’d also love to go to Lake Balaton and have a wine spritzer by the water, while the sun sets across the water. And I’d like if there was a ‘forget this all’ pill that I could take for a few days.

Truth is, it would be easier if I could leave my emotions and thoughts behind, and just do what I really want to do. With all that is going on, the emotions don’t make this easy, so instead as I feel frustrated and sad, I daydream of things I’d like to do.

So let’s see…

I’d like to smile more for my husband, so he feels like everything is alright. 🙂

I’d like to sleep really, really well. Sleep like someone who is on vacation and feeling so safe.

I’d like to look in the mirror and see myself clearly.

I’d like to dance all night, outside, with friends and some great candle light. No mosquitoes!

I’d like to listen to Cat Stevens and Eric Clapton, which I’m actually doing – so there’s one realized!

I’d like to go shopping for summer dresses.

I’d like to have energy! That will come. Not for a while, yet.

I’d like to eat something deeply delicious.

I’d like a gluten-free grilled cheese sandwich from The Red Door (in Ottawa). To be done.

I’d like a non-dramatic, yet highly fun kids book to read.

I’d like to make something cool.

I’d like to pet a dog to which I’m not allergic. And give it a big hug. And then it can take a nap with me 🙂

I’d like to go to the Farmer’s Market and pick out beautiful food – and I’d like to bike there and back, too!

I’d like to do very little, and yet still accomplish something wonderful.

I’d like to learn how to paint with oil. (And I guess, l learn how to paint at all!)

I’d like to play the piano. Christmas music, specifically.

I’d like to sail on the Queen Mary.

I’d like to go for a picnic in the common.

I’d like to sing. (Which I do, but you know, it should be done more)

I’d like to sit in a kayak and marvel at the water.

I’d like to realize that I feel 100% myself again. I love those vivid moments of self that sneak up on you; when suddenly you are at your shining best, doing what you love, feeling in that ‘impossible to perfectly arrange but wonderful to realize’ way.

Ever feel that way – when you’re just living life and suddenly everything is so very right? Maybe it’s in the garden . . . or walking to the shop . . . or the touch of a warm breeze on a gorgeous day . . . or the way a dress brushes against your legs . . . or the first taste of a cool drink . . . or the sight of someone special walking towards you . . . and you know you are 100% yourself, 100% your most, in that moment.

I’d like that.

While life shouldn’t depend upon anticipation, sometimes it is a very important sustaining factor.

P.S. Things I get to do everyday:

See my amazing husband. Enjoy the company of my family. Think about friends and those far away. Be taken care of – and right now that is a BIG deal. Nap. So you know, it’s not all horrible stuff – it’s just . . . I can’t help daydreaming of the better days, which include these things, and so much more.