Sweat, Tears, or the Sea

#15) Jump in the Ocean

It’s two in the morning. And it’s really cold. To me. Cause I’ve been running a reverse fever. Nothing big. Just a few half degrees under what most doctors would consider a normal temperature. I did tell them I always just run a bit colder then whats considered the average, but this is even a little colder then normal for me.

So I decided I was going to jump into the ocean. yup. At two in the morning. First, at midnight, I decided I was going to make a bucket list. That lovely, corny idea is really how this all started. And amongst my bucket list:

3. Kiss somebody new
7. Take a really nice portrait
11. Pretend to be a creative-writer-type in a coffee shop for a day (in progress ✓)
15. Jump in the ocean
22. Write someone a snail mail letter
23. Make someone’s day

And amongst my bucket list 15 definitely seemed like the right place to start. Anyways, everyone know that pancakes from the middle are by far the best.

So it’s two a.m. and it’s freezing and I’ve walked almost halfway around the sea wall adding to the corny list that now resides on my phone. And there are all these little stairs that cut out of the seawall at some points. So number fifteen was easy. Hid my backpack and jumped in.

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

🙂

Untitled

“I live in my own fantasies. When reality knocks, I don’t open.” – Something in the Air

So, being happy – is fun. Treatment, sitting in that freaking chair for hour after hour is not. Using what energy I have left to dance around my room at 3am in the morning – Fun. Getting dizzy and sick from lack of oxygen after said dancing – not fun!

This week the fun has outweighed the not fun. And, duh, I like it like that. Week and a bit into the last round of treatment… with only 50% of the dr’s agreeing completely on continuing.

I wish I was someone who could say deep meaningful things.. Instead of just running through each little anxiety in my own head.

Well, fuck.

Long long day. But it was good – I suppose. Parts.

With the new change in routine and the new drugs and fun and stuff, they’ve been doing a lot of testing and digging around in me. It almost feels hostile, like they’re looking for a reason to not continue.

And today they found a reason. But its only one piece of the puzzle. One factor that is influenced by many things. Basically in simple terms there is a problem with my liver, it’s much more damaged then they were expecting based on the last tests they did. Not a problem though – just means we’ve got to go back to the drawing board and shuffle a few things (aka. everything) around to make it all work. It’ll work.

4 days til my birthday. Ya, its a big deal to me… You spend your 7th, 8th, 9th, and 10th birthdays in the hospital being told you wont make it to the next one and see how easy it is to get caught up in the realisation that circling the sun one more time is a big deal. And like they kept telling me years ago – this one might actually be my last one since I’m going though my last rounds of treatment… 22. Its a good one to go out on.

Keep calm. It’s just cancer.

Stole the post title… can’t remember from who. But I did. Sorry.

But it made me laugh – cause you know what. It’s so true. I’ve done all this before. I’ve battled this and for almost 10 years I won (minus a few scares and set backs). This isn’t anything to be afraid of anymore. I told a good friend the other night I was “terrified”. Pretty sure the use of the word “terrified” should be limited to when there’s a murder standing over your bed, when your in the forest surrounded by wolves, or watching a good horror movie (possibly also Criminal Minds).

Mental shift.

This is not fair – but its also not fair to anyone else and it’s not worth putting the mental energy into whining about. Complaining, bitching and ranting sure. In my book all that’s fair game. But not whining. Whining is like saying I have no control over what’s happening to me – like I have no choice in the matter. Like this was something condemned onto me and I’m doomed to follow one set path. Which isn’t the case at all. I can complain about the choices I have, or rant about the decisions I have to make, or bitch about the inconvenience of it all, but no more whining – there are a hundred paths I can choose to take. I do not feel sorry for myself. I am strong and I’ve surpassed what everyone has expected of me.

When I started going to the hospital I was “dead girl walking”, everyone knew I didn’t have “much time”, didn’t have “much fight” or many “options/chances/realistic goals”. Two years ago when I was re-diagnosed I was told 18 months. 18 months ago I underwent major surgery and got another chance. And now I’m here and in 4.5 days (practically 4 days) it’s my birthday. Who gives a fuck that making it to April 25th, 2014, is unlikely.

This is my summer (one of the advantages of being a spring baby) – and you know what, I’m done after the summer. Last few rounds of treatment, a few last ditch surgeries, and a lot of fun. If I beat it I win. But this is my finishing sprint. I’m good at that part of racing, digging in and finding that extra gear. If I win great, if not then no one can say I didn’t give it my all. If this last chance combination of drugs don’t work then I’ve used up all my options – and thats not something worth wasting energy whining over. I’ve done everything they’ve asked of me and I want to be happy. I want the people around me to spend time with me being happy. I want to have fun. I want to mean something this summer and I’m only going to be able to do that by getting my head back into a fighting place and getting to a place where I can feel like I’m worth something.

Cause I am worth something.

(And yes I realize everything I’ve just said is fairly “light” and “happy” and “shallow” when the actual situation probably deserves a lot more seriousness and in depth conversation – but I’ve thought it through, talked to everyone I’ve needed to, and I’m done being serious and sad and depressed. Fuck, it’s just cancer.)

No more whining… But sorry to all the people who still need to listen to me bitch…

SIDENOTE: Might be slightly tipsy and happy and feeling good (no – not because it’s 4/20, just a friend visiting from seattle), but as a very good friend told me yesterday – Drunk words are just sober truths and thoughts.

From the Chair #2

Today I am:

• going to let myself feel worth it all, accept love and care
• not going to let all the little things get me down. My heart is still beating my breath is still deep, I am still strong.
• going to laugh and smile for no reason
• going to tell people I am good and say it with honesty. Because I am still strong – and “fake it til you make it” is still a thing and I want to truly feel good again.
• giving myself permission to forget all the friends that came before me and didn’t make it through. This is my fight and while I will always cherish them their battles, victories and losses do not influence mine.

Ya, yeah. I know its misspelled – Believing. I like it anyways.

My heart is still beating (despite the fact it refuses to beat at a rate appropriate for waking hours)… it’s still beating and my lungs are still working. I am still strong, and I am worth something. At least to me, I am worth something.

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.

Tired

3 days without sleep.

Drifted off here and there for 2o minutes or so sitting waiting around for appointments but every time I wake up more exhausted, and every night I still cant sleep. Spent last night at the hospital again. Two nights ago they gave me a triple dose of sleeping potion and it didn’t work. Something about my body metabolizing drugs to fast – to tired to remember what they said exactly. Today have spent all day here and still havent been able to sleep. Think I drifted off in the MRI.. They kept waking me up though telling me to stop moving.

Everything hurts more then normal, feels like my joints are full of cement. It feels like my skin is made up of a million nerve endings and even the needles that dont normally bug me pinch and sting.

Everything is beautiful today though. Its gorgeous here – there’s not a cloud in the sky. Heading out now before chemo to go lie in the garden. Maybe fall asleep there in the warm sunshine.

Its really gorgeous here today.

From the Chair #1

First post actually from my lovely comfortable chemo chair. Well, it might be lovely and comfortable say if it was in front of a TV like Joey and Chandler’s…

But unfortunately being in it means I have toxic little streams running into my veins so all the positives of the chair are kinda lost… Slept a little outside. I think I might be slightly sunburnt now though. Sun kissed at least – But I’m adding it to my list of positives from today. 🙂

My list today includes:

1. Finding a spot outside out of the breeze and in the warm sun to nap
2. Actually napping!
3. Between appointments getting to edit and post all my pictures from today
4. Finding out the facebook page I help manage is only a few hits away from breaking 10,000
5. Finishing 3 assignments (although I did those last night when I couldn’t sleep…still counting them though!)

Things I’m going to work on:

1. Not fretting about people around me. They either want to be there or they dont so just going to keep trekking along and see if they keep trekking along with me. 
2. That said, going to try and be more open to people being around… and not being scared of having them there.

Going to need some luck or just sheer will power to get out of my head for the last two. I think we’ll call today a good day.