Kayaking at Sunset

I'm going through the motions of the things on my grand adventure list but today the worry and the loss of myself is overpowering. I still got into the kayak and I slipped quietly over the calm darkening water. The waves rode along side me and kept me buoyant. The sun set over me and the full moon rose over the water sending little glints of light off each ripple.



As I clumsily paddled outward I felt a peace come over me. I just kept putting the oars in the salty ocean and heading out to where the colours met the sky. My heart is aching and I am scared, lost and confused about my life, where it's gone and what I should be doing next.

The quiet ripples soothed me and quieted my mind. I absentmindedly paddled for the open water away from the safety of the little cove. I went a bit to far and my kayak companions called me from the shore telling me I was heading out to far.

This snapped me back into reality and I just let the water take me in. The kelp was thick and deep with the bulbous heads peaking up breaking the water's surface.

I felt empty on this important little adventure. I felt nowhere. Deep down I felt like the waves should just carry me away to...

...somewhere else.

Where just seems like details. Disappearing has always been a huge draw for me. Here one day and gone the next, yet it has never happened except in my dreams.

What the heck do I have here? I ask myself that question every day.




Lots of love to anyone reading this. Where would you escape to if you have the chance?

Namaste.

Pain & Fear

Here I go again,

and again,

and again.

My pain free days are good days and ones I take (very deservedly) for granted. I've begun to journal my pain levels because I have a very high tolerance and a very short memory when it comes to pain.

I find it tends to sift into my consciousness and then out again as if it never happened, although I always know a pain free day when I see it.

Sometimes it's my gut, sometimes it's my muscles, sometimes it's some heinous menopause symptoms and sometimes it's my prednisone induced arthritis.

My joints ache and bother me like I'm twice my age and it can be uncomfortable at the best of times. The cold seems to be the worst for it and my joints stiffen like I've been hit with a freeze ray gun (how cool would that be?) When it's at it's worst I can usually slide into a hot bath and the heat soothes it. At the recommendation of my pharmacist I've been taking fish oil pills but the pain is getting steadily worse.

I've noticed that my right hip gets hit the worst. Sometimes it feels so bad that it seems like a whole other pain. It feels like it is deep within the bone and the pain radiates down my leg.

It's getting worse despite the fact that the weather is getting hotter and hotter. My mother commented on how strange that is because it's been so warm. Last year the summer gave me several months reprieve with little to no arthritis so what's up now?

I've started taking Tylenol and that doesn't even take the edge off. Yesterday I started to become concerned but it's Friday and my doctors office is closed until Monday. Now that the pain is in the forefront of my thoughts I'm getting downright scared. The pain in my hand has become a stabbing one and my fingers are going numb. I am unable to function or get anything done. Holding a pen sends a stabbing sensation. My eyes are so dry that this extra heat makes them feel like they have been burnt.

Unfortunately long term, high dose use of predisone can cause something else that's a lot worse...

Avascular necrosis. It's bone death. It tends to happen in hip joints and leads to bone destruction and eventually needing a hip replacement. The fact that I even have something like this to be scared about just boggles my mind. I'm only thirty fucking seven.

I used to be a runner. I was a healthy eater, I never smoked, did drugs or drank alcohol. I cleaned my home with natural cleaners. I exercised every day and lived a healthful life. What the hell happened?

NO FUCKING WAY.

Anyway, despite all that, here I am. This is my life and this is what there is to deal with. Suck it up as usual, shove the fear away and make sure I get into my doctor office ASAP.

Happy Singles Awareness Day!

Hallmark and the chocolate companies are laughing themselves to the bank today.

I'm completely wiped and have spent the day on the couch forced by my immobility to watch a series of princess movies. Heck two of them were Cinderella stories backed right against each other. My guess is, it's to remind all of us who aren't partnered up and hand feeding someone chocolate dipped strawberries right now, what we should be striving for. And for those of us who are watching television to escape the dripping looks of love between couples in the sunshine should all be sad and remorseful that our prince hasn't saved us yet. Every single last one of us deserve to be princesses and have our lives rescued by that perfect prince....

Right?

Well, as the 3rd princess movie was wrapping up and the brainwashing was taking hold, that thought crossed my mind. As I really thought about it, I remembered where I've been and what I've been through. I got over wanting to be a princess when I was 8. I also remembered the things that mean something to me and how grateful I am to be who I am, striving to accomplish good things without depending on the aid of another.

If I need flowers, I buy them myself. If I need chocolate, I get it myself. If I need to feel good about myself, then I tell myself that I'm worth it. I don't knock having a partner but I'm also not going to put off anything until that day. And if that day never comes then I will be everything I need. It can be hard but today I will I feel the complete gratitude of being the conductor of my own life.

Heck, I died my hair purple when I was 30, I ran off with my kids to attend university in another city at 32, hula hoop in the living room at random intervals and wear striped socks blatantly and frequently. I truly love being able to be myself without getting that look... you know the one.

Fuck the Bad

I took my life into my own hands today by going in for bloodwork a week early. I refuse to be left to live in fear of a cancer recurrence. I might as well know what the hell my body is doing, right? Screw living with my head in the sand, if something bad(or not bad) is coming my way, I'll be facing it.

I'm sure this burden will be lifted when my results come back improved. So far I have had mini freak outs about;

*a paper cut,

*bloating

*Mrs.Monthly showing up for the first time in a year or two(not supposed to be having that at ALL),

*and heart burn.

Like every other person who has had cancer knows, these little things can really fuck up your day. I really don't show emotions about this stuff, the best I can do is write about it. I just know that living, feeling like there is a gun to your head in a sick game of Russian roulette is no way to exist. I know some people practice a fundamentalist form of denial but I just can't go there for a lot of reasons. I need to know.

On other topics, I took these photos to add to the Flikr Bloganista pool. I also took up a kind woman on her offer to do a psychic reading for me. It felt like overcoming a little hurdle for me. Pre cancer I had had opportunities to get physic readings for fun with friends but for no particular reason I had this deep underlying fear of someone saying that I was going to die or tell me I was going to get cancer. I always refused to go. This is probably directly related to some terrible personal experiences from my past that I hadn't gotten over. Whatever. I felt mostly confident that she wasn't going to tell me I was going to die. Imagine being her and seeing that though. What would you say to the person? *awkward!*

Despite all that I can't say I specifically believe in anything other than what I can empirically or scientifically prove but I do have an exceedingly open mind! This is what she sent me;

You're very dependable, trustworthy, and studious. You love nature. When you see something you like, you will go for it. You're sensual and charismatic.

Good things coming your way, but some travel plan might be delayed. You are where you are right now because of your hard work and you earned it. A time for success or prosperity is coming your way. There might even change in residence or moving to a new place.

When you face problems, try to use cleverness to turn tide in your favor :).

She only does readings out of personal interest when she has a little time and she never charges for it. I think it's a very kind gesture to do something like this for someone you don't even know. More evidence that people have wonderful hearts.

The great part is that the next evening I sold 4 paintings!

Scared

I'm not out of the woods yet in regards to my recent GVHD relapse. I swear the doctor appointments never go away. I get my blood taken every two weeks without fail. The photo above is a couple of weeks ago when they couldn't get enough blood from the first hand so they did the other. Every time I go it seems there is someone new, who I haven't had before and I say the same lame joke every time. I ask them to take it out of my hands because my arms are scarring and I don't want to look like a heroin addict, ha ha. Usually that comment is received by the sound of crickets. I think someone laughed once so I don't know why I say it every time.

They always tell me getting it out of my hand hurts a lot and am I sure I want them to do it there? I feel like saying, "HELLO! I had 5 bone marrow biopsies, I laugh at your wimpy little needle!"

Anyway, I'm beating around the bush, the doctors office just called again. My blood is still not right and now my white count is elevated which sends off alarm bells. There are no blasts, which are the cells that mean cancer is back. But still, extra white cells without an illness that I'm fighting off can be bad news. They asked if I am sick at all which could account for the high white cell count but I'm not.

They want me to see my oncologist but all the appointments have been canceled because of THE OLYMPICS. Yes, the Olympics seem to somehow be a valid reason for canceling all doctors appointments in Vancouver. I've had another appointment canceled as well.

So now instead of going for a walk in the rare, beautiful sunshine, I'm sitting here waiting for my GP's office to call back. This sucks.

And the Olympics suck too.

Update: I feel fine but my GP is convinced I'm sick or infected in some way. I'm supposed to get to my oncologist if I have a fever, swelling, puss or any sickness of any sort. They also said that I may just not be well yet from the H1N1 even though it's been almost 3 months. They told me to take it easy.

What Now?

I've been starting to feel so much better. I'm finally not in bed all the time and I'm getting stronger every day. It's been two years since my transplant and almost 2 1/2 since I started treatment. Three years since I became ill.

I had plans and a life. Huge glorious plans that were coming along perfectly when I suddenly became sick. I had a casual position at the university library. I had my routines where I saw friends and did things on the weekend. I used to run every morning and sit at the beach listening to the waves lap at the rocks before school. I was wrapping up my bachelors degree and was doing so well I was expecting scholarships to take my masters in New Zealand. I had worked long and hard toward all of my goals, my life was sculpted and exactly where I wanted it to be. I had long term dreams that were finally within reach and money in the bank. I felt so satisfied with life that I thought my feet may just spontaneously float off the ground.

Then things began to unravel a little. Next thing you know, I'm being airlifted to a major hospital.

As I my skin was grey and they were pumping morphine and chemotherapy into me in another city I couldn't help but think I'd be back in a couple of months. I honestly thought I'd roll back into my life and continue as I was. Not for a moment did I think my life was in danger or that I wouldn't get through it all.

I'm a wee bit stubborn and I don't give up. I was actually arguing with my professor from my hospital bed because they wanted to lowball my grade for missing the last two weeks of University and my grad project. I told them I would complete it as soon as I got out. I told them I'd worked too long to give up at the end! They bumped my grade closer to where it should have been.

I went through almost a year of active treatment and patiently waited and waited to get better. My unwavering sense that I would be okay eventually began to fade. Two years is a long time to wait. My GP said I should accept that I have a chronic illness and should speak to a counsellor on how to proceed with my life as such. I had a lot of mental adjusting to do. Sometimes accepting where you are at that moment is the right thing to do.

Now that all the fanfare has faded and my friends have wandered off, now that no one would even recognize me where I used to work, now that almost every piece of my old life is gone, I am feeling the weight of illness leave me. I have periods of elation, mental strength and a stubborn push to move forward. I also have periods of fear and loss.

I am lost.

I feel like an Etch-a-sketch that has been turned upside down and shaken. There is still the faint outline of where my life used to be.

How do I really know if I take a step forward, there will still be ground beneath my feet? How do I know where to go when the dreams and options I had are gone. I am not physically or mentally where I used to be.

I have the most intense feeling of that fear inspired question hovering over me, what now?

Fear

Fear is that thing that nobody wants to talk about.

Fear is that entity that doesn't exist.

We're all bubblegum and candy.

Fear is what we experience when we lose the facade of control of our lives. When a cancer diagnosis is given, fear becomes real and tangible like cold water being trickled down your back. Like laying on cold concrete that chills you to your bones. Like a hand full of empty tears that you cannot shed.

I lived my life under an umbrella of thought, that if I worked hard enough I could make my life what I wanted it to be. I was fearless. I was a conquerer. I never let anyone see my weakness. Nobody could stop me.

Even the fearless feel the shadow as it comes. Fear, it seeps into your life when you don't want it. It covers the sun even though you don't acknowledge it. Pretending it's not there doesn't make it go away. It silently slips into the cracks and crevices of your mind and body. It wraps itself around your entrails. It quietly speaks to you when you are alone and not occupied in other thoughts. It's insidious weight lays on your shoulders and squeezes your chest until you can't even breath.

A cancer diagnosis, is a life sentence to fear. When will it come back? Will it ever come back? Will my body ever be the same? Will I die tomorrow? My body is now damaged from all the chemotherapy, so which kind of cancer will be next? How old will I be? Will it be fatal? Will I have quality of life? Will I see my next birthday?

I put fear in the closet. I laughed at fear. I told it to fuck right off. I changed my thoughts to other things when fear spoke to me. But, I have recently gained more respect for fear. I knew shortly into my treatment that fear would be following me for the rest of my life. I wouldn't get to walk away from the hospital and leave it all behind. Fear is now my silent partner.

I don't give fear any extra encouragement. I figure it's a huge way to waste perfectly good time. MY TIME IS VALUABLE. I don't fret every two weeks when I have my bloodwork done. I tend to keep my fear in remission. I wake up and see bright sunny days.

Sometimes, though, the fear overtakes this fearless person.

Off to the Oncologist

Unfortunately, where I live, they do not treat Leukemia. Therefore, I spent six months full time and three more months half time travelling back and forth for treatment. A year and a half later from when it all started I now go back about once a month for an assessment. They do my bloodwork every two weeks. Fun stuff. Yesterday I spent the day in Vancouver.


I try to make the most of my traveling day so it's not all about Dr.s appoinments. I chose to play with my camera as the day was moody. This is a shot off the ferry of a ferry.


This is the Granville Island Market, candy shop. MMmmm...candy!


This is the hospital that I lived in for 9 weeks without being able to go outside. I was at the top on the 15th floor. I almost break out into a sweat just looking at this building now.


I was brave and visited the 15th floor this time. I was able to visit and photograph my tile that I made "in house". Notice the angry spider amidst the lovey quotes and happy tiles. I ended up painting the green apple just to be a conformist.


Here I am at the unit. I didn't leave these doors for months. I was almost afraid if I went back, they wouldn't let me out again. Fear is a strange thing.

I no longer feel the same or look the same. I, in fact, am not the same, right down to my DNA. One thing I am, though, is alive.


I know I will find myself again. I have to.


Everything always looks sweeter on the way home.