YEAR 2 -post attempt #2

The tiara post, attempt #2. Two years ago I was diagnosed with having Acute Mylogeneous Leukemia. And today is a day for celebrating. Today is the exact right day to say, I'm glad to be here.

I'm going to start off with writing 5 things about myself because I was tagged by Michelle J.

I've never smoked cigarettes or been tempted to. I've never smoked pot or tried any type of illicit drugs. I never went through a drinking/party phase because I had my son as a teenager and worked hard to give him the best life possible. I used to run every morning after I got the kids to school and before I went to my university classes. I never slept around and I gave up sex in my 20's hoping to meet my forever guy.

At 32 cancer found me anyway.

I almost died on my couch at home alone. I hadn't been feeling well for months and had slowly disengaged from my friends so no one noticed when they didn't see me for a week. Luckily I had someone to call who took me to the emergency. I was flown by helicopter to to the Vancouver General Hospital in a fairly dramatic fashion. When I arrived all hooked up with tubes, I was put into a bare, quiet hospital room. I had a wave of regret and horror come over me. Why didn't I put any effort into remarrying? I was here alone.

Well, we can't be perfect, can we?

Nobody told me I was in any serious danger of losing my life. In those first few weeks, when things were scary, I never was afraid for my safety....ever. I felt strong like my life was firmly rooted to the Earth. I was as strong a part of this world as the ocean or a stone.

That's why I couldn't understand it when a great wailing was heard. Nobody came to see me in the hospital but many people went into a frenzy of morbid drama. Several songs were written but one with with the chorus line, "Hold on,______, hold on". Way to scare my kids. Acquaintances were telling my friends that I was dead for sure. There was no way I was going to make it. I vow on my life that I will verbally kick her ass when I see her again. My life was reduced to gossip.

Other than that things have gone almost perfectly. Unfortunately, perfectly isn't so great either. I'm still trying to gather my pieces together and manage day to day.

While living in the Cancer Lodge for 6 months I met some fantastic people. We used to laugh and have so much fun. It was like one long, albeit quiet, party there. We ate our meals together, sat in the outpatient clinics getting our treatment together and we took care of each other. I've never spent so much time with people like that. People's souls are amazing things and at that point we were all one. I guess you could have called them my bald posse.

I had to change my thinking of us being one when they began to die. Nothing in my lifetime has ever shook me to the core like losing so many people.


I feel comfortable talking about most things but I feel weird typing this.

I guess I'm done.

So, to conclude, this is my day to be thankful that I am here to type this crap. I am glad to be here, glad to be here, glad to be here.

YEAR 2

Is my tiara crooked?

At a low moment the other day a friend of mine said,"Girl, you deserve a f*cking tiara. I should make you one." I beat her to it.

Two years today at this exact moment I was told I had leukemia. I was in the emergency ward alone unless you count the hematologist and the entire ward of nurses. When I failed to look surprised or horrified they all went on their way to their regular duties.

I thought I could handle anything. I'm not so sure about that now. What I do know for sure is I look damned good in a tiara.

Words

i can be changed by what happens to me. but i refuse to be reduced by it.-Maya Angelou

Although the world is full of suffering, it is also full of the overcoming of it. -Helen Keller

Ouch Fest

Pain is a bitch. I have a very high pain tolerance and pain seems to be my shadow these days. So I'm not always good at assessing 'normal' levels vs 'get your ass to the Dr', levels. A couple of days ago I was getting suspicious and made a doctors appointment. By yesterday morning I was SO glad to be going and by the time I was there, I was going to the mental, pain zone. I find a certain level of pain puts you into another mind state which makes it more difficult to interact with the outside world. (Feeling like vomiting from pain is another sure fire way to know when it's too much).

Just before my diagnosis two years ago, I went to emergency with what I thought was strep and there was another woman there in the waiting room with insanely severe back pain. She would quietly shudder with pain and I felt very badly for her. In cases like this I usually would let her go ahead but this time was different. I would have clawed my way right over her to get in if I had to. Once a certain threshold has been passed, all bets are off. I never would have known this had I not experienced it.

So, anyway, I'm not sure what's going on with me now. Extra strength Tylenol seems to be taking the edge off of it. I've also been given preemptive antibiotics even though they don't know what's going on yet.

About 6 months ago something similar happened and I was on morphine for a while and almost hospitalized. My kidneys were bleeding etc. I sure hope that's not happening now. They've planned an ultrasound but it's not for two weeks. I know if I called my oncologist, she would get me in right away. It's also Friday and my doctors won't be available again until Monday.

I feel like a cat licking it's wounds right now.

Stuff of Dreams

It's days away from being two years since I was diagnosed and flown away by helicopter. When I was wisked away I though I'd be home and back in commission in 3 months. Talk about not getting the severity of what they were going to do to me. When I initially asked they wouldn't talk about it. It would have been nice if someone had said, hey! You're almost dead but not quite so we are going to poison you almost to the point of no return and then change your DNA, Have a nice day:)

I guess not everyone is into brutal eye gouging honesty.

Anyway, two years later I'm finally starting to feel better! Omyfuckinggawd! Everything looks different the last couple of weeks. The sky is bluer, the sun is shining brighter, the grass is greener. I think I could be a freak'n fabric softener commercial.


Soon I'll be dancing and singing on the mountain tops with Julie Andrews. You Rock it baby!

The major source of my trouble at this point is the graft vs host which is my brothers feisty immune system attacking my liver and other things. The "other things" is a whole other post. I react quite badly to the steroids I have to take. They make my life miserable.

They are the wee little pills at the top of the photo, labeled; Prednisone. Such a big wallop for such small pills.

The good news is that my tapering is going well, my liver is stable and I may be off them soon. I get unreasonably excited every time I'm about to taper them down again.

Currently I'm on 1/2 a pill which is 2.5mg, every other day. I haven't had to visit my oncologist in 3 months! I'm pretty sure she is lonely and misses me since I'm not in her office all the time now. I'll be seeing her in a couple of weeks. Maybe then she'll let me off of them permanently! Oh, to dream.


I'm finally having renewed strength in the belief that I will get better again.

Happy Post Easter!

Or, Happy Easter Post.I had such a fantastic day! I found out at the last minute that my 12 year old had to be home and that Easter morning had to be exactly the same as usual.

As a mom, I knew where that desperation was coming from. We've had a traumatizing two years and he wants to reclaim them back somehow. His way was having Easter EXACTLY the same. So I thought, "Sure". I'm up for that.

I drove out of town to pick him up because he was visiting my mother. I also hunted through Superstore to find all the same things as usual. This was tough because my memory is crap right now.

I also bought things for an Easter egg hunt because the one we've always gone to at my grandmothers was canceled. When I went to pay it was $121! I acted all smooth like it was no problem but really, that's the last of our money for the month.

I set my alarm for 5:00am so I could hide his basket and some eggs, like usual. I knew I'd be wrecked from doing it but sometimes thing must be done. He woke up in the morning and didn't wake me up! How fab! So I felt not too bad when I got out of bed.

My oldest son showed up with three friends for the afternoon egg hunt. There's nothing cuter than teenagers who are trying to maintain their "cool" status but are dying to run around the yard for eggs.

I love them. Especially my son who has his boxers sticking out of his pants.

The day was beautiful but completely stormed after the hunt. The wind whipped up in a frenzy and the rain poured and eventually snowed. It was, in conclusion, the perfect day.

And the SuperUltimateUberWickedCool thing that happened was finding this mutant mini egg. I have been eating mini eggs for 20 years and have never found an egg such as this.

I'm pretty sure in some cultures, mutant mini eggs are a sign of good fortune.

Balance

Recently I've been reminded of the quote I put in my grad calendar as my submission.

"Not all of the world is beautiful, and not all of life is good. The true artist has no right to choose only the lovely spots and make us think this is life. He(she) must bring the world before our eyes...he(she) must tell the truth". -Darrow

I added the "she" in so it made more sense to me. It seems ironic that this is the basic idea of how I am conducting myself now. I hope people realize how hard it is to speak the truth because so many people just don't want to hear it.

There's also nothing more condescending than telling someone going through hardship, that they should look only at the good pieces and cheer up.

I feel very lucky that so many people see the balance in life, and that the good can come with the bad.

As the wise and all knowing Kelly from Chemopolooza once said;

"I’m an optimist with a pinch of cynicism and a dash of fuck you :)"

Well said Kelly.

Artistic Angst

Well, I've had quite the hell ride the last 2 years, yes, it's been 2 years!

The good part of that is I'm feeling better and better to the point of being able to paint again. Even though in this game of hot potato (where I'm the potato) I feel pretty good about life. I attribute that to being honest in my experiences. When I'm angry, I'm angry, when I'm sad I'm sad, when I'm happy, I'm happy. Pretty simple stuff. We are born knowing this but as adults we learn to repress our immediate instincts and emotions.

I think as artists we train in being true to ourselves as much as we train in the physical realm of creating. Creating comes within yourself and can be a hard, deep place to reach.

I had a poetry professor once who egged, poked and prodded us to go to the dark recesses of the mind. To her this was the only way to be a great poet. She would even shut the lights out and had a plastic goose lamp for a moody effect. I was a little weirded out by that class. It was in a small community college where I guess they could get away with such things. I ended up doing the cover for the poetry book we pumped out. I guess even then I was destined for the visual arts.


Artistically and stereotypically speaking, artists are supposed to be in a constant state of angst. Angst is good stuff. I don't really dwell in those places because I don't see the point of hurting all the time. Sure there's a lot to hurt about. I just love enjoying life and what it has to offer. I love having an idea in my head, plotting on how to execute it and completing it.


I love the artistic angst, which for me is feeling my pains and processing them into visual form. I suppose it's a way of taking control and letting it go. I leave it there on the canvas.


It leaves me a lot of mental space for everything else.

Let's Play Kick the Cancer Girl

I don't like this game too much, it's becoming a little old.

For starters I don't much like being Cancer Girl. It is too reductive a role to encompass all that is me. Unfortunately that's all some people see when you say cancer. You stop being you and become someone else. Generally that someone else is a preconceived idea built by the TV and print media. The narrow potrayal of "miracle" stories and running fundraising campaigns have something to gain by their portrayal of the martyr cancer patient. It's called money, and people eat it up.

The occasional person I know has rebuffed my, "things are tough", with ,"you should be glad to be alive!" They wonder where my pink runners and permagrin are. Stairs are my nemesis. And isn't, "glad to be alive", a bit redundant unless you are suicidal? Of course I'm glad to be alive, DUH. I rarely see people who have survived a horrific car accident jump around glowing at the gift of continued life? They are too busy healing from the damage. So am I.

These miracle martyr stories are feel good fodder. They seem to only damage the perception towards the average person who is dealing with the day to day of living with/through cancer.

Don't get me wrong. I love feel good stories too. They can be uplifting and inspirational, but also at times they can set the bar too high. Is there something wrong with me if I couldn't continue working through chemotherapy? Should I try to stuff down my emotions and become a Stepford cancer patient? I'm me no matter what, so bite me.

I also talk about it. I consider true strength, being able to cope, deal with and accept your circumstances. There's no other way to move forward, except through and beyond. It's hard but the only way to let people know the real deal with cancer is to talk about it. I'm not being real if I have to hide what's going on in my life. Yes, there is cancer stuff, but there is other stuff too. I can't ignore what I'm going through to sooth other peoples anxieties. There's not enough makeup or Spanx in the world to make me look like what they want to see.

Maybe I'm too nonchalant about death and the like. Dark humour can be a brilliant thing when you have to stare death down.

So, let's give up this pathetic new sport. I think my "friends" anger towards me is actually their heightened sense of mortality. I make them realize that this may happen to them too.

Whatever.

Faithless

Have you ever had someone close to you betray you.


That friend who you were there for when their parents kicked them out, that person who you've known forever. That person that you saved from the schoolyard bully but happened to be a bully themselves. That person who you tried to make feel like a valuable human being, even when their behavior was deplorable.


Have you felt the sting of constant condescending remarks and just told yourself to let it roll off your back, and make excuses for them saying, "They've had a rough life, that's the best they can do."


Have you listened to and soothed someones ego through their divorce, bad relationships and bad choices. Have you ever thought that, that someone, really could respect you and your own choices for your life.


Have you ever felt you were losing a part of yourself when you tried to have empathy for someone who could not feel empathy for them self, much less others.

Have you reached that moment when you realize what a lot of time you wasted thinking that someone was who they weren't. Sometimes things and people are as they seem. You can read the book by the cover, after all.


Do you know that nanosecond when the spite from this person has now been aimed at your child? It's easy to see at that moment what a coward looks like. So you take the knife out of your back and realize what little effort will be needed to carry on without them.

Moving On

Sorry, I haven't been around the blog lately but I've had some life, house cleaning to do. Cancer seems to bring out the nasty in people and I've had my share of nasty this past week. It's unreal what some people do, and call you their friend. I'd say there are some loose interpretations of the word going around.

It is relieving to let loose relationships that are sour. Some people just don't mature past an adolescent age. Truthfully, my children have more empathy and couth than the person I've had to deal with.

What's done is done and good riddance....moving on.

Time and Space

I remember the first time I ever saw the paragliders, I was amazed. People can fly.


They weren't falling, they weren't propelling themselves through the air, they were simply floating. The beauty of their sails and the gentle moving with the breeze is hypnotic and entrancing.


I suppose they are a bit like kites, except for that, kites fight the oncoming wind and are tethered to the Earth.


Paragliders are neither here nor there. For a time they are not tied to any worldly assumptions or rules. Gravity is a concept at the back of their minds.


When I watch them shifting back and forth along the ocean banks I feel they are surreal. I am looking at them through the barrel of my camera but they seem not to notice I am in the same time and space with them. They are the observer and I am the observed. I wonder how I look to them, down here without wings.

Exercise for Dummies -a picture story

So here is how it goes. Your camera just came back all shiny and new and you feel a bit peppy so you haul yourself out of bed to go and try it out.








First of all you head to a nearby cove and trek 3 flights of stairs down the to the beach.










Where you see some really cool roots and crawl around taking photos.












Get hissed at by one of the incredible wonders of nature.














And haul your ass back up the stairs with your bed ridden, atrophied leg muscles.















The next day you drive up to the top of a nearby mountain.












Begin to experiment with your new camera remote.




Remembering to go back and forth, back and forth to adjust the camera angle and see how it's turning out.




Next get really excited about being out in the fresh air and decide to keep going, up to the peak.






Go up some more stairs.
















Then some more.

















And some more.








Set your camera up at the top.


Be sure to continue setting up your camera and running back and forth and back and forth to see how the pictures are turning out. When you get sick of your boring photos start throwing yourself off the lookout to see if you can get the timing right to get a shot of you in mid air.

Don't be surprised when you can't move at all the next day or the day after. What do you really expect after spending the last 2 years in bed? And don't worry, everyone who reads your blog will be sure that you lead an exciting, active life.

Feeling like crap is all part of the master plan.

Fun

I haven't been blogging as much as usual because I'm having such grand adventures. I've been doing slightly better and I got my camera back! Having my camera=adventure. For some reason, when I have it, that is when the neat stuff happens....but then again, maybe we make our own neat stuff.

To start off with, when I recieved my camera back from the camera hospital, there was this photo on it for me. Thanks camera guys! I love it!

Next I went to a hidden cove where I had to contend with many stairs.


It was well worth the effort.


But in my peaceful oasis I had a sudden visitor.


He/She wasn't very happy with me that I was blocking his/her path across the beach. I eventually got hissed at so I went on my way. After all it wasn't just my peaceful oasis.

Yesterday I went up a nearby mountain and tried out my new camera remote. I had a blast. An, exhausting, exhausting blast.





I can't even believe it's winter.

Back to my second Photoshop class this afternoon!

Oh, yeah

My tenant woke me up last night grinding his beans at 2:00 am. Who DOES that in the middle of the night?

So despite not having the best sleep last night, I did something naughty. Okay, it wasn't so much naughty as it was just pushing my boundaries way too far. I know that's what kind of person I am, running before I get one foot out the door. I just anticipate that the door will open by the time I get there. In this instance I anticipate getting well enough,

barely

to take a Photoshop class.

A couple of weeks ago getting myself to the school would have been all I could have managed. Today I managed to get there and have a passable amount of focus for an hour. I had to borrow money and dicker until they brought the minimum 3 hour long sessions to 2 hours. I can't sit through a normal class and I can't focus for 3 hours. Have I said Fuck Chemo Brain and Cancer before?

So, anyway, it was exhilerating! Better than sex (like I have any frame of reference for that).

After one hour I started losing it and it seemed as if she were speaking an unknown language. I'm a bit afraid I may be throwing money out the door because I may not remember most of what she taught me but I loved it. My teacher is such a wealth of knowledge. There is SO much to do and learn in this world. I'll be pissed if I don't get my full run at it.

I've had too much excitement today and I'm fading so, I'm out.

Oh, and I meant his COFFEE BEANS. I know what you were thinking.