This Video Makes Me Happy

Rage Against the Body

Just came back from a medical clinic and feeling distraught. Three weeks ago I had the fortune of being able to taper my cylosporin (anti-rejection drug) completely off. I was happy and cautiously celebratory about it. I was almost afraid to finally take a look at a life without cancer and without complications. Five days ago, though super vagina began to ache.

Not from a wild and passionate love encounter but for no reason at all. I became scared. I didn't rush to call the doctor because of what it all means. After a couple of days without it going away I called the doctor and had an appointment today. I sat and waited and waited while the time passed by my appointment and they kept filing the backlog of people in. I had a family emergency and just couldn't wait any longer even though the reason for my visit is potentially life threatening.

I left.

A couple of hours later I raced to a clinic which I avoid at all costs. I avoid them because they have no clue what my sentence (Freudian slip there but I'll leave it) is. I am like some sort of alien science experiment. They don't know what to make of me. Medical professionals don't know what to make of me.

They are great doctors but I'm too far out of their realm. I have to explain the bone marrow transplant and the basic mechanics of what that means. I have to tell them all the pieces that are relevant and let them fill in the gaps with the medical knowledge that they have.

I was kind of thrown off when the receptionist asked what the visit was for. I rambled a little trying to explain, starting with, "I'm complicated...". Once I rambled a bit she said, "How about I put 'vagina pain'?" Me, "Yes, that's the short answer, that's what I should have said..."

So I was sent in and waited impatiently for the doctor. When he came in he was an elderly gentleman and asked me what was up...I explained.

He said, "Say what?", I guess I won't be quoting exactly. I explained again slightly louder. He paused. Asked a couple more details and left the room so I could strip and get on the table.

He came back in and tried inserting the speculum. When he did, it felt like I was being stabbed from the inside. Despite my unusually high pain tolerance my hand pressed against the wall because there was nothing to grasp. He apologized in surprise that it hurt me so much and finished the inspection.

After I was able to get myself together, he told me it doesn't look like any vagina problem he knows of and explained what the walls of my vagina looked like. He was able to see that something is wrong but not able to identify it, which was what I was there for. Now that the usual vagina plaguing suspects are ruled out, my oncologist will step in. He then began to ask me out of curiosity what the bone marrow transplant was like. He then asked me what type of pain the situations I went through were like. I was left without words.

I absolutely loved that he asked and was curious because I also have a scientific mind. The part that overwhelmed me is that there was no real description for me to give about the pain involved. After attempting to explain, I told him it was indescribable. Only some one who has been through it or someone who has witnessed it would know. He then explained that women don't usually complain of vagina pain. They may talk about pain during intercourse but straight out pain is unusual. In other words this pain must be way bad.

I left.

And here I am waiting for a return call from my oncologist but it's the end of the day on Friday. I likely won't hear until Monday.

To sum up what's happening, the graft/vs/host has likely flared up. I'm not out of the clear yet.

I can't skip off into the sunset just yet.

It's reverse organ rejection but the new oragan (my blood/immune system/stem cells) are rejecting me and not just me....BUT MY VAGINA. This happened before, I was on huge doses of drugs and had to have surgery to remove all the scar tissue inside. Yum.

My oncologist explained before that some people do well on the smallest dose of the anti rejection but you take them off of it and WHAM, the GVHD goes wild again.

My biggest fear is of dying and or being hospitalized, my second is having to go back on the drugs that made my life hell and third that I will have to have another vaginal surgery. I guess my fourth fear is that my cervix will close up again and I'll be in so much pain I'll need morphine.

Deep breath. One step at a time.

And to relieve anyone's fear who has been through a BMT transplant or is going to go through one, this level of vaginal attackage is not usual. Even within the spectrum of unusual, I am still unusual.

And to also add, the GVHD has not been confirmed yet. Likely they'll send me back to the specialists (because I'm super special). If I'm lucky, it will be something else.

Black Days

Second son is well again and back at school trying out for the rugby team. I'm not feeling so great however. Maybe it's because I've had very little exercise while being sick and taking care of the boys while they've been sick.

I just feel like life is folding in on me somehow. It's not as if anything different has happened. It's more as if my life is being presented in front of me with no rose coloured glasses on.

I am nowhere yet which makes me wonder, will I ever be? This recovery process has been dragged beyond recognition as a period of time. This may be it.

I realize many cancer patients go through all these feelings afterward whether they are still fighting for their life or not. It just seems so counterproductive. I just lay in bed with the covers over me trying to disappear while the world goes on without me. It feels safe there under the coziness of the blankets. I feel lucky to have this bed because everything else is in shambles.

Rather than dreaming of buying a house and physically building what others my age have accomplished, I think about how lovely it would be to burn it all. Take all my crap that pins me down here and watch it burn in one huge pile. Then I could just leave and it wouldn't even matter where I've gone.

Wanderings

The adventures are on hold because second son has been very ill post H1N1. He had a few good days and then hasn't been able to get out of bed for about 5 days since. We went to the doctor and had a throat swab as well as blood taken (it wasn't me for once!) We are still waiting to hear the results and he is finally perking up a little.

Just before I came down with the H1N1, I went and walked around down town not sure if I'd get to see it again if the H1N1 killed me.


There is a little alley in Chinatown with galleries and shops in it. It always feels like I'm off in another far away place when I peruse the brick corridor. This alley was in the movie Bird on a Wire and also a movie with Dr McDreamy before Grey's anatomy.

I can see why. Who wouldn't be in love with a place like this?


Here is second son getting his H1N1 flu shot that was too late to save his poor little ass.


They doubled up on us and gave 2 shots at once, the regular seasonal flu shot and the other.


It was weirdly nice having someone to get shots with for once. Not sure he thought so, though.

Clouds

Was driving my son to rugby yesterday and was taken by how stunning the clouds over the ocean looked. I snapped some photos while huddled inside my car from the cold wind. Still feeling unwell from the flu.




No photo photo the tree wearing the sweater yet, but it'll come.

Neighborhood Art Walk

I've been suffering some serious cabin fever since the H1N1 reared it's pinhead and was well enough today to go for a walk. Since I haven't actually bonded with my 10 month or so new neighborhood I decided to take in the sights that are all around my home. Since I've been here I've realized this place is like no other I've seen before. Out of necessity I've traded the woods and wildlife I crossed paths with everyday for... other things.


In this new place I seem to be surrounded by oddities of human nature. Expressions of self on this man made terrain.


Philosophers wax poetic on concrete, anarchists speak with paint, sharpies author introspection, politics are pictorial and wool replaces words.


Kind of wild.

























The one above is very political against the Olympics and a slew of other things all wrapped up into one mural. Very creative message to the people.







My neighborhood reminds me that art doesn't need canvas or university degrees. It's our very breath.

Heartache

(photo from, Crazy Hair Day, post)

Now that I'm sick and more laid out than usual I've been contemplating the blog and looking back through all the photos I've posted since I started. Next thing you know my chest hurt and I felt like I was having a bit of an anxiety attack. I called a friend to try and ward it off because anxiety attacks feel like life and death for some reason, my chest felt like there was a big stone inside.

Talking is such a great way to put out what you're feeling and to be able to process it. I told her that I was browsing the photos when it came on and she asked me if I was upset to see how sick I'd been. I said, no. I was actually thinking about how creative and fantastic the photos are. That made me pause and wonder what the heck it was about.

Then I realized it. My blog and me, hasn't been the same since my hard drive crashed with all of my photos and videos on it. Not all of my photos post diagnosis but a lot of key photos. The blog has pictures on it that have no originals anymore. This blog is the only memory of them and they are low resolution for the internet. The photos that I didn't post and didn't back up are lost.

If you're thinking, "What a dope", because I didn't back them all up just realize that I had almost zero idea how to use the internet and computers before my illness and blog. I didn't even actually know what a blog was when I started it but that's a whole other post. I self taught in a vacuum at home by myself asking people the occasional question.

So, as I was browsing the photos a huge sense of loss hit me. Not a loss of my life or a sadness because of the cancer but the loss of my creative self while dealing with the rest. It's hard for me to talk about that.

Shortly after my computer crashed I moved from my big beautiful house that had my art studio in it and a wildlife filled backyard to social housing in the city. I haven't been the same since. My blog hasn't been the same since. I don't wander the beaches anymore. I don't talk to other bloggers much anymore. It seems like the last six months or so are an empty blur.

If I can deal with the loss that cancer brings, surely I can deal with the loss of a hard drive?

I have so many new adventures that I haven't posted for some odd reason. I keep thinking, I'll get to them but the whole picture fiasco makes me want to shut it up into a box and not think about it. I feel impotent (ha ha, to the mental image that just gave you).

Anyway, I'm going to start posting those previous adventures. I have a long list of awesomeness that didn't make it here... yet.

Children in the Attic

I sit here in my living room hearing what sounds like footsteps above my head. They sound like hesitant steps of someone tiptoeing....wandering....

That's because I keep the children in the attic.

For my safety's sake they have the upstairs, not including my bedroom and I have the downstairs and the kitchen. We have an upper and a lower bathroom as well. I have put rubbing alcohol in a spray bottle to disinfect all the doorhandles, light switches and faucet taps. I stocked up on soup, gingerale, Tylenol and Halls (by special request). I have my Tamiflu in my purse ready to take.

I'm all set for the zombie apocalypse...oops, I mean the H1N1.

I keep putting on my mask, going upstairs and making deliveries of tea, food and drink to the infected. I'm hoping if I appease the fickle higher powers, they may have mercy and pass me by.

Meanwhile, in my body I think there is a mini triathlon going on. It seems like there is some sort of internal finish line and the microscopic viruses are racing my antibodies for the win. Who will get there first? I've definitely been exposed and keep having a touch of a sore throat, mild headache and hot flashes.... but unfortunately that's a normal day for me. I really can't tell who's winning.

I'm on the antibodies team for obvious reasons, I'm not ready to put those pretty shoes on yet.

H1N1 in the House

This sucks. My second son and I went on a pilgrimage last Friday to get the H1N1 vaccine. It turns out we didn't get it fast enough. Day before yesterday 3rd son had a headache. By Morning he was looking like hell. Second son said he had a sore throat. I rushed them in to the doctor who was able to get us in at 11:00am. He confirmed that they likely have the H1N1 flu. We were given prescriptions of TamaFlu (not sure if that's how it's spelled) and I immediately had them filled.

They became increasingly ill all day and this morning but at this second they are feeling a touch better. I've been wearing one of my left over masks from when my immune system was really low but I think it's too late. I have a headache and my throat is a little sore.

I live with those symptoms anyway and even have hot flashes from my early menopause so it's hard to say if this is anything extra. The flu shot takes a certain amount of days to kick in and it seems we just barely caught it before the vaccine worked.

I have to admit, this really pisses me off, I feel extraordinarily angry at the H1N1. Seriously, how dare it come after me. I didn't barely make it through cancer just to be killed off by a fucking flu! FUCK YOU SWINE FLU! I will kick it's ass all over the place!

So, if I have it, it will be my first flu since my transplant. I guess it's finally time to take this new immune system out for a test drive. Who knows how it will deal with the flu virus much less a rogue respiratory attacking flu virus? Kind of scary, kind of anger inducing.

Anyway, if I die I'm going to die with these shoes on because I've never even had a chance to wear them.

I Rocked the House

Did you know a large part of the population fears public speaking more than death?

I went to my speaking engagement not having one micro-clue what to say. I've been too busy to even give it much thought and was sure I was going to flop hardcore. I've had experience speaking to my university classes for presentations and it always took a lot of research, writing and planning to have up to 5 minutes of material. I even took a public speaking class because of my terror of speaking in front of people. I always thought I would pass out but that's because apparently when people get nervous when speaking in front of others they stop breathing. Absurd but true.

So I walked in and was greeted by the kind woman who I had invited me. The group is an exclusive group of women who raise money for scholarships for women. The group has history and they began when women weren't expected to attend post secondary. They believed otherwise and fought for it.

I met them the year I became sick and they gave me a generous scholarship for school. They had been keeping tabs on me since and now wanted to hear from me.

I stepped into the house and was ushered upstairs to wait until it was time for me to speak. Then I was brought down to a room with about 20 people. On the way there in the car I began mulling over what to say. I came up with, starting at the beginning. Genius, right? Okay it was obvious, so I stood in front of them and asked them what they knew of my diagnosis and what I'd been through. Of course they didn't know anything other than I had cancer.

So I began telling the tale from the start. From not feeling well, to diagnosis, to my reaction to being told I had leukemia and being carted off in the helicopter. I mentioned some of the details that are stuck in my mind forever like how the helicopter flew low over the water so I could see the blue of the ocean with the sun sparkling on the islands and then how we landed on the roof of the hospital in the middle of the city. I asked the hospital paramedics where the heck I was because I was strapped down and couldn't move my head so they turned my stretcher in a circle to give me the 360 view of the city. It was the most glorious and most physically painful moment of my life.

I spoke of my children and how we had never been separated. I spoke about how hard it was to be away from them and then talked bout my chemotherapy and bone marrow transplant. I told them how my only sibling had a 25% chance of being a match for me and that he was. I also told them about the others who were going through the same thing with me that had large families with no matches. I told them how grateful I am to still be here and the struggles that have come for me and my sons since. I even mentioned how the other people I went through treatment with died and how I still feel the weight of that on me.

There was so much more to talk about than I had ever realized. The trick to public speaking is to know your topic and no one knows the topic of me like I do. As I talked about these things I could see the emotion on their faces and it made me realize the gravity of it all, it's been quite a road. This is the first time I've told my complete story from beginning.

So, I stood there for 40 minutes with grace and composure talking about the worst time of my life and had them laughing at the end.

Rather than failing, I achieved. I rocked the house.

First Speaking Engagement

I've been asked to do a talk tomorrow about my last three years living post cancer. I'm so exhausted and don't know what to say. I realize I've been writing about it for the last 2 years but speaking verbally about it seems so much different. I battle to keep my emotions in check at all times when speaking face to face with people. I've just been burned too many times in too many different contexts and to me speaking about what you're going through = sharing = being vulnerable = being a target.

Doing it on the blog is a controlled way of sharing for me. It's me stretching my boundaries and trying to change for the better. Outside in the real world I'm not so good at this. I suppose that's not that unusual in the context of the world, I just learned early on that allowing people in wasn't worth it. Going through cancer, treatment and recovery just adds a whole new layer of stuff to try and figure out for myself. Not sure how to relate that to other people.

And I struggle with trusting people. I struggle with letting people know how I actually feel in any way that connects me to them on a personal level.

I have to admit that up until now it's worked for me but now things have changed. I know I need to change.

What the heck do I talk about in a way that is remotely interesting to them? Do I talk about being tired because that's mostly what I've got going on these days. I feel like I have a couple of 100lb bags of rice laying on top of me most of the time. Do I talk about my disappointments or my frustration with getting through every day? Do I talk about how hard it is to raise kids with no money or energy? Do I tell them that my house is a disaster because my energy never gets much farther than the grocery store?

Or do I talk about the moments I work so hard to squeak out of every day? The ones where I laugh my ass off at the sheer absurdity of life. I think that would get me through about 2 minutes and they want me to talk for 15-20!

Seriously could use any input on what to talk about and it's in the morning! I have a feeling I will be figuring this out in the car on my way there so if you have any, any, any ideas please let me know ASAP!

I can see it now actually. Me standing up in front of them tapping the microphone, *tap tap* "Is this thing on?"

"Ahem.... so there was this bald chick who walked into a bar...."

Update on, 1,000 Wishes for Jen

I'm really happy to post this update on the Jen's Cranes effort. As I wrote before, I bumped into a woman on Etsy forums who was asking for help folding 1,000 cranes for her friend who has brain cancer. I myself was a recipient of this amazing gift from friends and strangers when I was going through treatment for AML.

The cranes have been arriving in a steady stream and they are half way to their goal! Five hundred paper cranes are now waiting for Jen, all signifying a wish each for her to get well.

All of this love and goodwill have been coming in but last week there was an unexpected surprise. Gary from AllegroArts on Etsy made her a folded silver crane. Yes, SILVER!

You can read the blog post about it on Jen's official crane counting blog.



And I can't even fold a paper one! I am absolutely blown away by his skills, kindness and caring for a person going through such a hard time. I'm sure this will touch her heart deeply. Thank you Gary.

Go check out his shop, and if you would like to jump in and fold some cranes for, Jen, yourself or just leave some good wishes, please check out her site and blog.

Hallows Eve

Self portrait after a night of partay and revelry.



This is the aftermath of the makeup session.