From the Chair #3

Been two months and two days since I’ve posted. Not cause I didn’t want to mainly just cause I really didn’t have anything in depth to say. Since my last post everything has stayed relatively status quo.

The mental side of things keep throwing me for a loop but thats nothing new. Treatment is treatment. It seems to change day to day week to week depending what the rest of my body/metal state/sleep patterns are doing.

“never give up”

Since my last post I’ve had an immeasurable amount of chemo, needle pricks, lectures, x-rays, scans, tests, lectures… Since my last post nothing has particularly improved.

So I guess things haven’t actually stayed “status quo”, that infers that nothing has changed. My seizures are something that I’m starting to battle on a semi-weekly basis. Yesterday I was out walking, as I do to try and deal and process and I started to feel that light off kilter spinning feeling. I knew I had to do something quickly so I took my medication and had my ice water with me, lay down and shut my eyes, plugged into my white noise track on my ipod and next thing I knew it was hours later and I was in the emergency room. Friends were not happy with me… especially because they didn’t find out about this til a few hours ago.

In the chair today I am:

• Just going with it, I dont feel like I have any energy to fight any more but a little knot in my stomach feels to squirmy to let me get up an go. Its the same little knot that gets excited to race and hates losing board games and makes laser tag so unfun… Basically my much to competitive streak lives in a little knot in my stomach.
• I am not in the chair actually getting chemo today – I am sitting in a waiting room waiting to see if I can be squeezed in to see the speciallist I don’t actually have an appointment with… I’m hoping there’s something to be said about persistance
• Today I am actually feeling okay.
• Feeling pretty loved

🙂

Finding an even keel…

April 5th was my last post – and the second last thing I said 13 days ago was I wanted to find an even keel. Solid ground. Definitely did not do that. Nope. But I made it another week and a half. Didn’t do it gracefully by any means but did it all the same.

Yup. More then accurate.

I think this past week (and a half) the hardest thing to accept was that maybe, just maybe, people care. That possibly I’m not so crazy and there’s actually someone who’s willing to endure this with me. Or at least listen to every situation and promise to never walk away even when things get so overwhelming that I can’t deal with it in a healthy, or productive way. Why would they want to put themselves in this situation, where I can’t promise not to hurt myself let alone them? Where I can’t think straight and just need to hurt? And how can they think all this is strong? How can I be someone they want to hang out with or help when all I can think of myself is that I’m pathetic for not being able to endure this better? And what about when this is all over, if it’s ever all over, will they still be around then? Or are they just being the incredible human beings they are, by helping an acquaintance when she’s low, and needs it? Or maybe its simpler then all that and they really just are my friends, and so many of them don’t know how they’ve helped me get through every single day.

There are so many people I should tell this too. Just so they know. From the person who’ll sit in a park on my lowest nights, to the person who’ll never let me feel sorry for myself, to the person who goes out of his way to make sure I have a reason to smile. I wish I could just ask – “am I someone you genuinely want to know, are we genuinely close, or am I just someone you feel the need to take care of because you’re amazing?”…

Long week

Well, “long week” just doesn’t have the same ring as “long weekend”. The latter is much more enjoyable. It’s been a really weird week too – very up and very down. It’s never really stabilized or evened out and while I guess I have to say I’m grateful for the ups, I never would have gotten through the week with out them, I know I’d’ve preferred a little less turmoil.

I suppose the week really started where my last post ended…I was so tired. And I walk a lot at night. Just wander – some nights it helps me clear my head. Some nights it helps me remember. That night I just wanted to forget. I was so so tired and I just wanted to sleep so I could deal with it in the morning. So I lay down and made a stupid choice, probably close to one of the dumbest things I’ve ever done. I think I was maybe lucky that help came by when it did but for my decision I spent 48 hours in an evaluation psych ward. But I got to talk to a good friend when they called. Made me feel a little less awful, still feel pretty pathetic though. The thought of going home wasn’t one I relished so I tried my hand at rallying and 10 of my teammates came over and we made an easter monday breakfast (although at that point it was like 2pm…). That was a high high.

Spent the rest of the week not sleeping and on and off in the psych ward of the hospital just trying to get my head back in a safe place or just trying to get some rest. It all culminated in a late night remembering way to much, feeling way to much, and just being overwhelmed by all the little things that broke out of the little boxes I’d crammed them into. Scary night.

I ‘fall down’ a lot and I can normally always pick myself up. I’m good at picking myself up. I dont think people realise this… I’ve been fighting for a long time and a long time alone so I know how to do it. When I fall down people dont notice because I try very hard not to let them – it’s part of getting up again. Fake it til you make it, right? When you fall down just pretend you’re still up and speeding along like normal and eventually you’ll be right back up again….

This is getting ramble-y…

This week I fell in a really bad hole. And I tried to deal with it myself and that landed me in the hospital, then for the first time I called for help and after that, when I know I should have got to get professional help, I talked my way out of it. I called because I wanted someone to just take me. I didn’t want to do it alone and I didn’t want to have the choice to fight. I just needed someone to tell me how to do it. But I couldn’t go because to many people died there – and a friend, I didn’t know her well, just from sitting across from her chemo chair a for a few months, was in a bad way and they didn’t think she was going to make it through the night. She didn’t. I knew I couldn’t’ be near the hospital for that. I’m glad I wasn’t.

The day after that I won an award for all the work I’ve done this year for my team and now I’m in sunny california playing the supporting role while my team mates race. It’s a weird mix of amazing and a lonely and it’s odd not having a crew. You’re definitely closer to your crew then you are to anyone else while in season. And just a little while ago I was accepted to a pretty prestigious masters program…

As someone else put it – from the outside looking in my life’s pretty perfect. Pretty fucking perfect.

Things for this week:

1. Try to get everything moving on an even keel
2. Try to remember that no matter what someone will always care, and not everyone will tire and leave.

Hanging my Hopes on: Breath

Today I’m hanging my hopes on my air. Trusting that one breath will come after another. Closing my eyes and hoping that all the drugs working to keep my heart beating at an appropriate speed will work. Trusting that I’ve got the best possible team around me whose goals are in line with mine. To just keep me breathing.

For a year and a half I got through the day by knowing that no matter what they threw at me I could survive because my heart was strong, it hadn’t yet taken a beating. Brain cancer doesn’t effect your heart or lungs. I could go to my happy place every day and spend hours on the river rowing because the best feeling in the world was stoping after a 4-minute high rate piece and taking a full deep breath. Now its in my lungs, and my heart hurts, and I’ve spent the last 8 months going to every single practice and standing on the dock or sitting in the coach boat. I don’t have a crew anymore, half of my identity as a rower is gone.

But today, to get through the day today I’m going to hang my hopes on the idea that eventually breathing will be easier. That I’ll get to be me again and that this is not the new normal. This is not how I’m going to live until I die. This is not it.