Tuesday, 17 December 2013

Why are we afraid of the dark?


 When I was a child, I wasn’t afraid of the dark.  In fact, now and then I’d hide in a closet and find a nook that was dark and quiet, trying to find a little bit of peace and quiet for myself.  This is not to say that I didn’t believe that things lurked out in the darkness, that the world around us wasn’t populated by a thousand invisible enemies who were waiting for us. I did. I simply wasn’t afraid of them.

My earliest dreams could be called nightmares, except that they weren’t frightening per se. There was the one where the skeletons danced and played instruments around my bed and made it levitate only to fly out onto the street ( after going right through the wall); there was the one where my sister and I were in the middle of a volcano with our grandma, trying to find our way back up the top; there was the one where I was running for miles down a spiral staircase with someone, while something chased us (we were separated after he flung me out the window to escape).

Still, in each and every single one of this dreams the emotion that dominated me wasn’t fear, but rather an all consuming need to take what control I had of the situation and escape.  The survival instinct was all that I could focus on, so there was no time for the fear.

Friends and family remarked a few times how taken aback they were by the way I handled my cancer battle. And yet, I don’t know that I found my reaction out of the ordinary. It was, it is, a battle. I have been training for battle since I have memory of self- awareness; most of these dreams took place before I was six, although some ( the tower one in particular) continued well into my teens.

My grandma Anita use to sing us stories. I say stories because they weren’t simply songs, but rather a continuation of the story that connected us to her, to the generations past.  Most were tragic, many strangely haunting. One was about El Coco ( El Cucuy) which I didn’t come across until recently (http://en.wikipedia.org/wiki/Coco_%28folklore%29):

Duérmete mi niño, duérmete ya...
Si no viene el Coco y te comerá.
Y si no te come, Te llevara…
Y si no te lleva, quien sabe que hara…

(“Go to sleep, child/ go to sleep now/ for if you don’t the Coco will come and eat you/ and if it doesn’t eat you, it will take you away/ and if it doesn’t take you, who knows what it’ll do…”)

Until yesterday I was fully convinced that she had made it up.

I wouldn’t put it past her; with her dark humour and wit, it was just the thing she’d do. However, it appears that the song is far older than her… ancestral even. It’s a warning about one of the many things that live out in the dark, the many things that can attack us if we stray from the path. I’m reminded of Little Red Riding Hood and the warnings to not stray from that path… what lay in the wilderness around it? What could we do if we did stray and things spun out of our control, in that savage land outside the prescribed, safe routes?

Like I said - I wasn’t afraid of the dark, and I wasn't afraid of straying from the prescribed road to make my own path. It wasn’t that I didn’t believe in monsters - oh, I did!- but I believed in my own capacity to outwit them and survive. I believed that no matter what these spawns of a chaotic universe attacked me with  I would find a way to still make it out alive.  So my life, much like my cancer battle, hasn’t been guided by fear but by faith… largely in me and my ability to find  a way out when things spin out of control.

When my son was born, fear snuck in.  Not about me, but at my ability to protect him.  I had honed my skills over the years to know that  I woulsd find a way to always be okay… but it wasn’t about me anymore.  So I told him there were no monsters, and put night lights in his room. I told him that the  shadows were the hangers in the closet, the baubles in his room. I told him there was nothing beyond this world he saw, so there was nothing to fear.  I told myself that if he couldn’t picture the monsters in the darkness then perhaps they couldn’t see HIM.

Then the cancer came. Then came the day my  son asked me about G-d. How did I know, how could I know? If there is nothing in the darkness, how could there be something in the light? I realized that in hiding the monsters I had hidden the fae, the spirits, our G-d. Because at the end its all about faith, that faith that walks you through the valleys of fear, that lifts you into safely and healing.

So now I don’t tell him there’s no shadows in the wall. I don’t tell him that there are no bugbears in the world, that he walks cloaked in the safety and bliss of ignorance of what may lay beyond. I don’t tell him there’s no Coco, but teach him how to build up  his strength and hone his battle skills… so if the bastard ever comes for him he knows just how to take him down.

Tuesday, 10 December 2013

She Was Named After a Star

We met in the support group, brief moments only.  It was odd and soothing, how strangers shared an hour and found so much in common, while our children played.

Tanabata, I remember thinking. The herder and the weaver stars... the lovers separated that only get to meet once a year, on July 7th. Her brain tumour had come back, and she knew. She knew, and we all shared silences while elsewhere in the building our children played.

How do you come to Winter, and not think of them? When every leaf whirls in the wind, catches the light.. .and you remember? And snow falls, strange ocurrence in Vancouver, and the silence only leaves you time to think and to imagine? To say a prayer and a silent thought, a moment's touch of remembrance.

I remember. I remember the names of each and every friend I've met that shares the journey. This year has been hard, and I imagine others will be too. There have been many that have fallen, because... well, many do. Many do, and that is why we fight, and claw, and scream, and keep pushing for research and for surgery, and for options because we have as much right as anyone to live, to fight for the possibility of life.

She was named after a star, and never forgot how to live. The best, the only thing that we can leave those we love is that footprint of love, that warmth that wraps around like a shawl against the winter chill.

We remember you. We remember.

The Mother of All Surgeries comes to Vancouver

MOAS Comes to Vancouver

I had the chance to meet with Dr. Yarrow McConnell, an amazing doctor that trained under the one and only Dr. Temple.

Its no secret that I love Dr. Temple. Adore, in fact, and that is shared by my whole family.  His skill and his kindness helped me make it through the surgery and its aftermath. Still, having to go to Alberta for my surgery was  a huge upheaval for me and my entire family, and it was pure luck that my sister had moved to Calgary about a month before my diagnosis so  we could all stay there.

Fact is, 2012 could've easily ruined us financially if we hadn't had that sort of support. Besides the stresses on family, on work and school(*for my son ), there is also the financial considerations. We are blessed with the possibility of going to Alberta and have that surgery and stay in the hospital covered... but my goodness, how much easier would it be if it were available here!

When Dr. McFadden first asked us, back on diagnosis day, how we felt about Calgary I thought my sister had been calling and pestering him. Seriously, that was what came to mind. He quickly explained that no - the surgery was only offered in a few places in Canada, and the best ( and the one that BC had an agreement with ) was offered at the Tom Baker Center under Dr. Mack and Dr. Temple.

Wow. Suddenly  I had to go to another province, to have a fighting chance. And mind you, I would've gone anywhere where I had a chance to beat the cancer... but I had a young son,  modest incomes... even the thought of Calgary seemed incredibly faraway. Thankfully my family pooled together, and we made it happen. It was an incredible feat of love, dedication and luck. But it WAS hard. How much easier might recovery had been if I could've been home... with my things, my food, my bed? (Not that I don't love my parents and sisters, but there's something about being in your OWN bed!)

This is a chance for people to have that. For people that hear 'Calgary' and know they have no way of making that possible, no chance of getting there or looking after themselves later.

I really like Dr. McConnell. She was kind, enthusiastic and determined to keep a program going here. She trained under Dr. T in Calgary for three years, I believe, and the fact that it will be available here makes it so much easier for anyone needing it.

I am hoping to be able to help with awareness locally too, and give back a little to those in the middle of the journey. Here is to 2014!





Friday, 1 November 2013

Huh.

So I got TWO calls from the cancer centre today. I was expecting them to be a cancellation of my liver MRI, since my oncologist didn't seem to think I needed one after all... but that didn't turn out to be the case.

One was to CONFIRM my MRI, and to let me know that yes, on the 5th I need to be there in the morning.
The 2nd was to let me know that Dr. T has asked an associate of his, Dr. Mc, to take me on for consultations.

I had heard about her when I had my check up in the summer; I know she trained extensively with her and they are trying to establish the same type of program that the Calgary center has here in BC. I think its fabulous, and I'm both happy to meet her and to hopefully be part of the program being available to more BC patients. Still, a little part of me is sad that I won't be seeing Dr. T anymore... he really is that amazing.

I also thought that meant that my next follow up would be the 6 month from Dr.T's ( January), but she wants to see me in just over three weeks. Overall I'm feeling a little nervous, but hey... the more information and attention the better.

Finally got to make an appointment with my sister's naturopath for later this month too.  I balked a little at the "Oh we charge $150 for new patients", but at the end of the day I just need someone that can see all the issues, bits missing and things I want to accomplish and help me design a nutrition plan.

Today is my son's 9th birthday.... and I feel so blessed to be here to celebrate it with him. :)

Wednesday, 23 October 2013

Whew!

Good news... clean MRI!! :D NED! Dr. J doesn't think I need to have the liver MRI based on this one, so that one might be cancelled. He will confer with the radiologist and probably Dr. Temple.
I DO have to get back on calcium and vitamin D, and he has ordered a bone density scan I need to have done as a baseline, as I am at higher risk for osteoporosis. I'm actually also having done hepatitis exams, just to be on the safe side.
So what's up with my liver then?
Well, it would seem there is fatty liver infiltration.  Because I don't have a gallbladder anymore I can't really process fats at all - most is tossed out, other absorbed into places that it shouldn't, like my liver.
This is also compounded by the weight I gained since March or so - rapid weight gain thanks to the thyroid issues is still weight, and done in such a short amount of time that my body is feeling the impact.

So, the solution is weightloss, but also  revised eating habits for me.  While we've come a long way and we've just started our family challenge ( thank you Ula and Val for the tips) I will probably need more strict monitoring and expert advise on how to go about doing that, because of ALL the things that got taken out of my body and all the types of food I can't process anymore ( like probiotics).

Chris' insurance covers a naturopath, so now that I have all the information ( pending the bonemass and hep tests) I will follow up and try and get an appointment with one. Onwards!

Tuesday, 17 September 2013

And six weeks later...

I had more bloodwork done and went in to see my GP again.

Medication has helped my HBP and my thyroid issues, but my liver enzymes keep going up.  On her advise I contacted my oncologists, and Dr. T suggested a CT scan or an MRI to see what's up with my liver. All advised not jumping to scary conclusions, but they were also concerned.

My 6 month MRI is coming up on October 9th. That's booked, and ready, as is meeting with Dr. J  two weeks after that (* he's away until the end of this month). It took some pushing and explaining, but his office has sent a request to the imaging department, as we need to see what is going on with my liver, which apparently means an MRI focusing on the liver ( no date set yet).

Wee.

I'd chalk it up to feeling nervous about my 6 month MRI if my bloodwork wasn't consistently getting higher. Of course, my paranoia takes over and keeps conjuring up the worst scenarios possible. Don't we all do that? I'm taking it day by day but some days are rougher than others.

This fall  (all of 2 weeks ago) we finally chose to pull our son out of a school that wasn't meeting his needs and homeschool him. He has been thriving and we have both been loving it, but the health issues rearing up have us nervous on that regard too. We choose to go ahead and take this leap of faith because we HAVE to be able to plan to some degree, to anticipate a future and prepare accordingly. It has been immensely  rewarding to see him thriving, even if this particular journey has no map of the road ahead. Isn't that true of life in general?

At least I've never been daunted by the road less traveled.

Sunday, 11 August 2013

The Not-So-Fun Aftereffects

 A week after we got back from Alberta I went to see my GP, as I'd been having random vertigo for a few days.  I also wanted to discuss getting on HRT as Dr. T had suggested, so I thought it was better to go to my doctor than to a random clinic.

Honestly, I thought that I was getting an ear infection, having had a really bad one ( with severe and constant vertigo) about fifteen years ago. That said, I thought we'd be in and out in a half hour.

I really should've known better, as life seems to like curveballs.

In the end I didn't get HRT. When I described the vertigo and she checked me over there was nothing wrong with my ears, but my blood pressure was a whooping 162/120 ( or thereabouts).  I left her office with blood pressure medication ( !) and a slew of lab tests I had to get done.

The next morning ( still a little shell-shocked), I went to get them all done. There were flags all over the place. She called me in on Tuesday to discuss the results; my thyroid had jumped 8 times from a test we had done in April, and there were concerns about my kidney and liver functions.

I was pissed. I'll be honest. I was furious after we left that office, because I left with a prescription for thyroid medication and the possibility that there might be issues with my liver or kidneys in the relatively near future. What's the cause? Probably chemotherapy. It isn't rare for the cocktail that I was in to cause any of these issues, and its just my luck that it might cause all of them. I mean, I seem to have gotten just about all other weird side effects.

After the crankiness subsided, I took a deep breath. I know that the surgery and chemo saved my life. Sure, chemotherapy may be the equivalent of leeches to people a hundred years from now, but its the best weapon we have. And I went in, guns blazing, to throw everything but the sink at it.

So, for now I'm in a couple of medications, and in five weeks we will get all the tests redone and see how things are evolving. I am hoping that the medication gets to the root of the problem, and hopefully it gives my body time to recover more from the chemo.

Today is my boy's first day at his first sleepaway camp. I will focus on that instead.

Monday, 22 July 2013

The Anniversary Check up And the Strange Workings of the Universe

We just returned from a week-long drive to Alberta for my 1 year check up with Dr. T.

Anniversaries are scary; every doubt seems to creep up and keep you from sleeping well. I have had amazing care throughout this journey, but my doubts and worries are always put to rest by Dr. T. He is the expert who opened me up and took the cancer away, or as my son so eloquently puts it 'kicked the jelly's butt.'

I wanted to go and see him so that I could take a breath and move on. I don't think that you ever entirely move on from cancer, but for the past year and a half I have been living in the moment and in fear. In hope, partly, but mostly in fear. I hate being afraid; in middle school I took up drama to force me to confront my fear of crowds and public speaking, and since I have tried to face my terrors the same way. 

I wasn't prepared for cancer. Not for the practicalities of treatment, for the friends made ( and lost) along the way, not for the sheer pummeling that body and spirit can take. Mostly, however, I wasn't prepared to lose my ability to project myself into the future and plan what may lay ahead.

Dr. T was amazing. We discussed the MRI ( NED, stellar) he did an exam; he encouraged me to go back onto HRT as that will help me rediscover more normalcy in my life as well. He was delighted to hear that I am back to my old self, even playing soccer with my son; he was sad that I didn't bring him to meet him, but I promised that one day I will.  He asked me if I had written any more books, and thanked me for the copy that I sent him.  This wonderful expert, this amazing human being... how can I describe the love that my family feels for him? It isn't just gratitude, or admiration, but genuine affection.  This was the person who saved my life, and managed to save our family.  I asked a question for a friend whose family member is undergoing this journey and he was quick to point me ( and her ) in the right direction.  How are we so blessed, to have found him in our path? I finally got to meet in person his wonderful assistant D. - what a team! People who genuinely care and try to help feel so rare, this day and age. I hope they continue to inspire everyone that works with them for many, many years to come.

Another joy was in seeing my sisters and parents, all reunited in Calgary to make some better memories this year. Aiden got to play with his cousins, and while poor Chris slept away the week  thanks to a miserable bout with bronchitis we all made wonderful new summer memories of that beautiful place.

My sister Ula and her husband MOVED cities so they could be close to the hospital and support me and my guys. They didn't ask, they did it... they went above and beyond, and showed us the sort of love that I am still in awe of. 
My youngest sister, Val, had an internship in NYC that she passed up ( despite my protests) to be at my side and help me through the aftermath of surgery. She told me that whatever her future held would still be there, but that she needed to be there that summer to help me through the rougher times. And she did. This past Spring she got a different internship in NYC and today released the first single "M&Ms" of her EP Saudade: http://www.thisisfakediy.co.uk/articles/news/listen-tei-shi-streams-debut-single-mms/

 I have to believe that life is coming full circle, and letting us all rebuild. I can see the future now. I can plan, and picture my son graduating highschool, university, getting married. I can see my sisters in their careers and partnerships, happy and fulfilled. Like the fortune cookie I received as a teenager, my future now feels as boundless as the lofty heavens.

The MRIs will continue, every 6 months. I don't know that those quite end. But perhaps between those half year intervals I will disconnect a little and just build new memories every chance I get. I always get the questions and the comments, so if you ever need to reach out, I am happy to answer.

So here's to tomorrow, and all the tomorrows yet to come.



Monday, 10 June 2013

MOAS Anniversary

June 7th was the anniversary of my MOAS, the cytoreductive surgery.
I was dreading it and planning to be a hermit, but fate had other plans for me. First my son volunteers me  as a parent helper at their heritage walk and art workshop that day  (so how could I say no?) and then the day before our upstairs neighbors floods our apartment!

Suffice it to say it wasn't the most relaxing all days all around. It did, however, remind me again to put things in perspective and not sweat the smaller things as much. Aiden and the kids in his class had a fabulous time despite the pouring rain, we are not at fault so the strata and the guy upstairs will have to pay for the damage.

Most importantly? I'm around to deal with life's stresses alongside my guys and realize how lucky we are. <3

Friday, 31 May 2013

Survivor's Guilt

In early May I phoned my grandma to let her know the good news about my MRI, and the fact that it was NED. Grandma Anita was happy to hear it from me, but she wasn't surprised -- she said she knew, as she had known all along that I would be alright.

A few days later she passed away, at the age of 93.

I had to fly overseas for her funeral, to be there for her, for my sisters, for my mother. For me.  I had to find my way back to my beginning so I could say goodbye. I wondered about her words, about that last conversation; my grandma was a believer, her faith strong. She never really pushed me to believe in one thing in specific, as long as I believed in something. Faith, she often reminded us, saw us through the worst moments in our lives. I'm pretty sure she stuck around until she felt that I would be okay.

Truth is I hadn't traveled much since my MOAS. I was afraid to. What would happen if I ended up with a bathroom emergency? Or if I had an obstruction or some sort of other issue? The what ifs that never held me back before suddenly had me frozen in place. And then Granny Anita passed away, and I didn't even think twice - I was on a plane to see her off,  I was coming back to her.

My grandma practically raised us when we were little. She taught me to LIVE - not just to function but to live, to seek out the things that made me happy and pursue my dreams wherever they may take me.  She encouraged me to fly, even if it took me further away from her and her own life. Her legacy for me was that fearlessness and that faith, and I hope to instill those in my son. It took her passing for me to remember that side of me, and honour those lessons.

The funeral and the memorial were hard. A thousand people to hug, and words to give and take in. A million exchanges, touches, wishes. At the memorial, as we sat and talked about the wonder that was her life my mother noted that she couldn't be there for her mom on the last day, because for all last year she had been looking after her own daughter's life, and the chance she might leave her own grandson without a mom.

I felt thrown under the bus, as everyone's eyes turned to me. Some knew about my battle with PMP, other's didn't. But suddenly there was the weight of their curiosity and a wave of guilt I hadn't felt before. I lived, and she did not. That same week one of my friends from the PMP support group also passed away and while the guilt felt different it had the same familiar ache - why am I here, when others have passed on? Should I feel guilty that I have stuck around, when PMP and other things have claimed other daughters, other mothers, other friends?

No. No, I shouldn't. I know that.  I know that my survival isn't at their expense. And yet there is always that ache, in being one left standing. When people say someone lost their battle with cancer I can't help but to think about the people I have known throughout this journey - no, they didn't lose. They went down kicking and biting, and left a legacy with their courage, their dignity, the sum of their lives' work.

Cancer changes you and your family. Sometimes it makes you stronger, sometimes things fall apart. Whichever way life pulls, it is never the same.  I can look ahead  a bit now... I make plans for the next six months, until the next MRI and whatever it holds. But I am not the person that I was before this, and I will never be that person again. That's okay.  Whomever I become now, however my family changes and adapts to this new 'us', we'll find a way to make it through.

I am still grieving for the siblings I won't give Aiden, for the expectations of a future life that may not come to pass, for the friends I've lost along the way... but I'm done feeling guilty. I love this life. I love my life, I love my boys, I love my sisters, and my parents, and my friends. I love my art, I love plants, I love food, and music, and dance. I love living it with no regrets. There are things though, that clearly I am not done processing yet. I am not sure how long it will take to do so, and I am not sure that I can do it on my own. Perhaps its time to look into counseling, so that I can best figure out where to go from here.

One day at a time- my grandma taught me that.

Thursday, 25 April 2013

Thankful

Just got back from scan results, and it was NED - no evidence of disease! So thankful and happy!
No more scans for another 6 months. Apparently the pain I was experiencing are the adhesions from surgery, still settling and stretching now that I have gained back weight.

  Off to enjoy this gorgeous spring afternoon and count my blessings.

Thursday, 18 April 2013

The King of Impossible Things

Today is my MRI, the one that was moved from late May to mid April because of the zombie gnawing in my belly.  I won't get the results for another week, which will be a long and stressful time. Needless to say, I'm nervous. Scanxiety -- when does it go away??

Truth is, I don't know that it does. I think we're all shell-shocked still, and trying to not think that every pain and swelling, the persistent fatigue... all add up to the jelly beast being back.  I am hopeful  that its just scar tissue settling and the return of glorious belly fat. I can't stay in a place of fear, and while most of the time I am getting better at getting on with my life the times surrounding scans bring it all back.

There are times we struggle; our eight year old is having struggles at school with his teacher, and more often than not tries to think of ways to stay home with me. I'd like to think its all about their clash in personalities, but to be fair I think there's probably a fair ingredient of him just wanting to be home enjoying doing things with me. Let's face it, I pretty much slept for a year. We couldn't do much together, and it took a while for us to get back to our usual activities, to discovering the world together. I don't want to give it up anymore than he does!

That said, we have to live our lives with the belief that there will be MANY days and many years ahead for us to share together. And that is where faith comes in.

I believe in G-d. For me and my family that has been a tremendous help - to think there is some order to the chaos, and some purpose to the universe. But faith isn't only religion; I have faith in science, I have faith in my family and doctors, in my friends and community. The power or universal goodness that is so often overlooked.  There is so much anger and despair in the world, and sometimes I want to be the ostrich with my head in the sand. But for all the hate and the monsters out there, there are also good people. There is the good in all of us.  I choose to believe in all of that.

I joked with friends around the time of my MOAS that I knew I was in good hands, since I was going to the Tom Baker Centre and Tom Baker was one of my favorite Dr. Who. I love Dr. Who, and all its incarnations. I love that the companions always have faith in him, even if he lets them down, even if he can't always save them. The purpose of it all is larger than their individual stories, and in all his different lives there is a constant of conquering impossible odds and never giving up.

This year is Dr. Who's 50th anniversary, so I made a piece of art for it. Here's to faith, and to impossible things. 


Thursday, 4 April 2013

Anniversary Check-up booked

So I  just had a phonecall from the Alberta Tom Baker center, and my MOAS anniversary check up with Dr. Temple is booked for July 16th. It'll be neat to see Calgary again in the summer, and actually get to enjoy it this time. :)

Tuesday, 2 April 2013

A Welcome Spring

It has been hard not to spend the past month taking note of all the anniversaries; the day I had my appendectomy and the first sight of the mucin, the day we found out it was cancer, the day we had to tell our son...the list goes on and on.

I can't live on anniversaries. I can't let the year from hell drag me back into it. Spring break was good - we put our son in a theathre camp and got to do art with him, science experiments, celebrate my MIL's birthday and spent time with the new nephew. Everything around us seems to be blooming and its a joy to behold ! Vancouver had a stretch of warm and sunny weather, and it has done wonders for my spirits.  I love BC ... it really has some of the more spectacular scenery in the world.

Having Aiden at my inlaws for a few days also gave me the impetus to paint our master bedroom. I had acutely disliked the colour since we bought our place a few years ago, but because it was a neutral colour decided to keep it for a while. The colour can charitably be described as an off-shade of pinkish tan, but during my convalescence I became more and more convinced that its actual name ought to be vomit. Finally I decided to take matters into my own hands and after convincing Chris a serene lavender blue would be a much happier choice, painted it. It was exhausting but exhilarating to be doing something physical again!

I have also signed up at the local Curves gym, since  my GP gave me the go ahead. Activity will help me build up my strenght and stamina again, and with spring I feel a renewed need to do things on my own and reclaim that independence.

On the health front, my  arthritis continues. I switched over to Aleve and it was an amazing difference, so I suspect that after all this while my body is probably too used to ibuprofen for it to help at all. The topical cream has also helped, but as this was supposed to last a month or two and we're now going on five my GP had me do some hand x-rays and we'll see if that shows anything. Hey, perhaps exercise will help a bit with that as well!

I also went to see my oncologist as I've had some belly pains and a bit of swelling again. While it can conceivable be simple belly fat ( I have put on 15 lbs since stopping chemotherapy) my mind jumps to other conclusions. I suppose over time I'll stop worrying that its a recurrence, but I don't see that happening any time soon. It feels like... tiny zombies gnawing on the inside, not like the usual cramps or pains.  As it is we've bumped up my scheduled MRI from the end of May to sometime in mid April. I hope to have the date soon so that I can make plans accordingly.

In the meantime, life doesn't stop. Aiden is curious, happy and adventurous -- and I have to keep up! I talked him and Chris into going to Lynn Valley canyon and the suspension bridge there. I like it better than the Capilano one because its free. ;)  I am utterly terrified of heights, and in particular of suspension bridges; when my friend Hiroko visited in 2011 and wanted to go there I thought I would pass out. This time? Not so bad. I'm guessing that after cancer suspension bridges are peanuts!

We had fun crossing to the other side, hiking down into the canyon ( while singing the songs from the Hobbit) and the more arduous hike back up. I'm not -quite- as woefully out of shape as I thought. :)



Monday, 18 March 2013

A Blue Rose

I have always loved the legend of the blue rose, the thought that at the end of it all a true heart can accomplish the impossible.  I am a firm believer that despite the odds one can prevail.

So in the spirit of continuing to learn new things, I tried my first oil painting, a blue rose done with a palette knife ( no brushes). This blue rose is for Chris and for Aiden, that they always know that love, that faith and hope.It isn't great - my mother thought they looked like cabbages. ;) But Aiden and Chris where here with me while I painted it, cheering me on, so to us its pretty special.


Aiden has been doing his own blog, and we continue do learn new things together. I have been teaching him watercolours and acrylics, and together we spent the last few weeks tumbling our own rocks. We kept a journal and now that they are finished we're turning them into pendants and dangles for family and friends.
We also got a painting in the mail, so had to go into Opus and learn to stretch it ourselves. Chris did it, and it was an amazing new experience. 

Today was another first, for me. As I dropped him off at his day camp for spring break I had to park at a Curves gym. Those of you that know me are probably aware that I am not the most physically active person; however, after a year of inactivity  I feel the need to get my body back. I need to get my strength and stamina back, and I am also hoping it will help with the post- chemo arthritis that I am still dealing with.
So! Friday I have an appointment with my GP to get some ideas on the arthritis and get her green light about my exercise plans. I got some information and handouts from the Curves owner, and its close enough to Aiden's school that I could drop him off in the mornings and come down to do a workout before heading home.

Monday, 4 March 2013

Anniversary

A year ago today, the world changed.

I was baking challah with my son, preparing to celebrate Purim and then go watch The Lorax with my mom and sister Ilana.

And then I ended up in the hospital, wheeled into surgery and coming out with a cancer diagnosis.

Today I am going to be a bit of a hermit. Aiden stayed home, so we are going to enjoy the sun, go for a walk, paint together. We will research together the rocks that we are tumbling, we will tackle the next Jules Verne's book together.

Life never gets back to what it used to be, but I think we are starting to figure out this new normal.

Saturday, 2 March 2013

The Month Without Microwave Challenge

Trying New Things

There are many challenges and new adventures we have undertaken of late. After seeing how quickly one's world can change I've made it a point to keep trying new things, learning new things.  This past weekend Aiden, Chris and I made it up to Whistler for me and Aiden to learn to sky under Chris' tutelage... that didn't quite work out thanks to inclement weather and a mistake when getting our skis, but it did put us in the mood to keep trying new things. :)

I have often told Aiden that for me standing still is stagnating; the day that you stop learning something new, trying something new... that day you aren't really living. On the way back from Whistler we stopped at Britannia Mine and had a tour of it as well as of the mill; Aiden was as fascinated as we were, and we got to enjoy the store's selection of rocks and minerals. That resulted in us getting a rock tumbler, so that we can tumble our own rocks and learn more about the process and minerals in general. Sure, its noisy and it will take us the next three weeks, but we are all intrigued.


The Month Without a Microwave!

I have long had a love affair with microwaves. Let's face it, they are handy, handy things. However, one of the things that came out of the long year battling cancer was the need to revamp our eating habits. By and large, we are fairly healthy eaters; when I was pregnant with Aiden I had high blood pressure, so after he was born we tried to cut out salt and incorporated lots of vegetables and fruits. Last year was a challenge because of the state of my digestive system after the MOAS and during chemo; everything we knew pretty much went out the window, so we had to re-learn how to think about nutrition and about food in general.

Something I realized is that life is too short to eat food you don't enjoy. That means that you are never going to get me near a brussel sprout again, but it also means that I am a lot more conscious of what I am putting in my body. Having gotten the Cancer Fighting Cookbook we decided it was  a great chance for all of us to rediscover food and its joys together.

It also meant that I didn't want to go near food that I don't trust for some reason.

I have a couple of friends that have gotten rid of their microwaves. When I first heard about it I thought it sounded impossible. How do you make a quick meal? How would you reheat leftovers?

But that's the point, isn't it? No microwave burritos or pizza, and as for left overs... well, you simply have to make smaller portions and eat each meal fresh. Theoretically less food would be wasted that way too, since we found that we would get bored eating the same thing over several meals.

So, starting now, this is our challenge -- we took our microwave out of the kitchen and have put it away for the month of March. If we can make it a month without needing it we will break our microwave habit, and can get rid of it for good. This is the first step in what I feel will be a healthy me, and I am excited that Chris and Aiden are on board with the challenge too. :)

So here's to the upcoming month... we'll see how we fare!

Wednesday, 20 February 2013

Three White Hairs and the Canucks

The Three White Hairs and Post Chemo Arthritis Update

A few weeks ago my hair finally stopped thinning out, hurrah! I was lucky in that I didn't lose large chunks, as happens with most chemo medications, but it fell out evenly all around, so it just thinned out.  Today I noticed that the reason my hair looks fuzzy is because new hair is starting to come out.

"Hurray!"  I thought. And then I looked closer. They were curly. Alright, I have wanted curlier hair, so that would be an excellent development. I HAVE heard that sometimes the texture of new hair will be different when it grows after chemo.

Then I looked even closer, at three glorious WHITE hairs.
...
Oh, my.
Well, I do always tell Chris and Aiden my goal is to grow gray and wrinkly next to them, so I guess it starts! ;)

In other news, I started taking Diclofenac in the New Year, to help with the joint pain from the arthritis, as Advil wasn't touching it.  The creme definitely helps, particularly at night. I'm able to sleep through the night for the most part, and that has been a wonderful change. I'm still in pain, particularly my hands and knees, but I am managing to get back to most of my routines. Since pain management seems to be mostly under control I am starting to look around for  activities that will help me be more physically fit. It feels like I slept for a whole year.


Thank you Vancouver Canucks and Fred Ewanuick!

In the Summer of 2011, before the nightmare started, we went on a weekend outing and ended up visiting Capilano Suspension Bridge. After the horrid experience of crossing the chasm of doom our son wanted to stop by the gift shop; happy to be on solid ground again, I quickly agreed.

We ended up only purchasing a postcard, and when I asked him who he was going to send them to he told us he wanted to send it to the local hockey team, the Vancouver Canucks. In particular, he wanted to send it to his favorite Canuck, Ryan Kesler. So we mailed the postcard with  a SASS envelope in the hope that he might get a little note back.

Life happened. That fall my brother in law got married ( Aiden made his first girlfriend at the wedding. Or two. He was six going on seven!), we all came down with strep throat, then bronchitis... fall turned into winter and before we knew it it was 2012. That new year I wrote an email to my family to rejoice in the new year and look forward to new challenges and opportunities.

Well, we got those in spades! In fact my one wish this New year was for a healthy, happy year with no surprises. With everything that happened, we pretty much forgot about the postcard. When Aiden would ask in late 2011 we let him know that the Canucks are really busy, have only specific seasons...etc. Privately we thought it had probably just gotten lost.

So,  guess what arrived yesterday?

An envelope addressed to my son ( in my writing) with a photo of the Canucks and a signed photo of Ryan Kesler. Aiden was in utter disbelief, and such joy. After all this time! It was a sign, I told him, that this year will be much better. Things are coming together, happiness arriving at our door.

He put them up next to his other prized possession, a hat signed for him by Fred Ewanuick, his favorite actor. That hat helped him through a lot of rough spots last year, and he showed it off to everyone that would look or listen.  Thank you Mr. Ewanuick, Mr. Kesler and Canucks -- the joy and love you give back to your fans matters more than you might think.

2012 was the year of Cancer. This is the year we take our lives and our joy back.


Tuesday, 29 January 2013

As Boundless As the Lofty Heavens

When I was a teenager I got the following in my Chinese fortune cookie :

"Your future is as boundless as the lofty heavens"

I put it in my diary ( used to keep one by then, heh) and took  that to  be my motto from then on. Life and all its endless possibilities lay in front of me, and it was both dizzingly exciting and overwhelming.

I graduated in June 1993, nearly 20 years ago. I was eighteen. This past week I found some of my graduation photos, including those of my sisters and my parents. One of my baby sisters was here and she remarked on how young she looked  - of course she did, she was three!- and how young my mother looked. That made me pause and do some quick calculations and I realized that my mother was my age that day.  I look at my mom's photo when she too was thirty-eight and  wonder at how different our lives are.

Of course, we're very different people. Personality wise, experiences wise, we have relatively little in common. But I looked at her in those pictures and realized that to -me- those twenty years were a blink. That the boundless sea of opportunities and adventures I saw ahead of me at the age of eighteen were likely very different from how she viewed the world back then.

I tried to imagine what life will be like in twenty years, when I am the age that she is now. I can't. I can't see myself in twenty years, although I really want to. When I look forward that far there is only so much mist, as though the story isn't about me anymore; I suppose things change once you have kids, as your life's story becomes about them as much as about you.

So what will Aiden be like, in 20 years - when he is 28?
Will he have found the love of his life and soulmate, as I did? Will he have traveled, met people, had adventures and chased each and every dream, as I have?

I'm probably asking too much of my boy. Right now he's a sweet eight-year-old, dealing with a changing world. But when I sing Kermit's "The Rainbow Connection" to him every night, when we tell stories to each other at bedtime or make art together... baby, you really are a lot like me. I see so much of your dad in you too, but in so many ways we're so similar, you and I. And my story becomes a letter to my boy, and the hope that he lives it out with as much joy and wonder as I have to day, and with a lot less heartache, that his future IS as boundless as the lofty heavens.

On Legacy - and Kids' Club

It has been a rough few weeks for our support group, as several people have lost their battle with PMP.  I am a firm believer that love and spirit are never lost, only transformed, but its hard to see them go. There is an ache that they aren't here anymore, and anger too; there is never resignation because no, we never go gentle into that good night ( thank you Dylan Thomas for the rallying cry).

For those of us that are parents ( and there are many!)  there is also the urgent need to know that our kids will be okay. Not just okay - but thrive. There's always a plan for the  practical aspects... I know, if it should ever come to that, that Aiden will be well looked after and loved -- not just by his amazing, loving dad, but by his aunts, uncles and grandparents. He's surrounded in a blanket of love, always.

But will he know me? When he starts writing, or drawing, or dreaming... or facing life's heartaches ( because they will come) will he understand that part of his reactions and his choices reflect mine? Will he remember my voice, or wonder what advice I could have given in the matter? I think of Diego, my best friend at Aiden's age, who died of leukemia back then. I don't remember his voice, and his image escapes me. Echoes of echoes, and I want to leave my son something more solid than that.

Legacy isn't something new in my mind. When I published my artbooks and my novel I was thinking of him, and my parents and sisters. Something tangible of me that they might look at or read, and understand a little more of who I was and the worlds that lived in my mind. That let them glimpsed inside me because let's face it, we're not always so good with words.

 Given the people lost in our group the last little while it has been a lot more on my mind of late, however. So many wonderful suggestions! Writing letters to be opened on certain occasions like their birthdays, graduation, wedding. The birth of a child. All occasions that one hopes we will STILL get to experience together, but on the off chance that isn't in the cards we can still have a presence there. My Chris and my Aiden are tattooed on my soul with indelible ink, so how could I not wish to be present for them in any and all ways I can?

We made it to the Cancer Agency's Kids' Club this past week, after being unable to go for all the other ones as one of us was always sick. Aiden loved it -- he got to play with all the other kids,  got to discuss cancer and feel like he wasn't alone. For him it was really, really rewarding and I'm happy we went.  As for us - I think it was good for Chris. I know there are somethings that he needs to get off his chest too, and it was good to have a safe space to do so. But it was rough on both of us too, as several wonderful people there were experiencing recurrences. The urgency we all felt was not just for us and our partners, but the thought that our kids should have something of us, in the event that we can't be there to share it with them.

I brought up some of the suggestions of the FB support group, and the counselor pointed another option out:

http://www.recordmenow.org/

Record Me Now. They even have an app so you can do it on your own. Its free of charge and you can do it yourself. A way to leave people messages about who you are and what you believe in ( though I should really look into what it takes to back them up somewhere too).

Enough contemplation for today though. I think its time to put on some music and go dance. <3

Sunday, 20 January 2013

Audrey Hepburn- 20th Anniversary of Her Death

Today is the 20th Anniversary of Audrey Hepburn's death.

This amazing woman, humanitarian, actor, was taken by the same cancer I battled - appendix cancer. Back then, when they found it there was nothing that could be done. Remarkably while there are some treatments now there still isn't that much research into it, comparatively speaking.

 http://www.crmagazine.org/archive/Fall2009/Pages/AudreyHepburnAppendixCancer.aspx

The picture is of a book her son released about her.

http://www.amazon.ca/Audrey-Hepburn-Elegant-Spirit-Remembers/dp/0671024795/ref=sr_1_4?s=books&ie=UTF8&qid=1358703303&sr=1-4

We miss you, Audrey.

Monday, 7 January 2013

Happy New Year, New Normal

Happy New Year!

I look at the rollercoaster  that 2012 was and realized that it both feels like a week and like five years went by. I remember a lot of what we went through last year, but some of the memories begin to fade - particularly those around the MOAS itself.  I'm glad that I kept up the blog ( and while in hospital Chris and my sisters did) so that I can properly write down everything we experienced last year, as I've been working  on putting it all down on paper.

The more stories we have out there, the better. I know there are another couple of PMPers and their caregivers that have written or are writing books about their experiences, and I think they go a long way in taking away some of the fear when diagnosed. This scary journey is so very individual in many ways, but in others we can still leave markers for others to follow, possibilities of what to expect. Besides, its always about the journey, rather than the destination!

The New Normal

Health wise, I feel great all things considered. I am building strength and stamina, and slowly returning to my routines.   What I have found really limiting is the post-chemo arthritis, which hasn't improved; Dr. J let me know at our appointment that it can last several months, so its just a matter of finding the right balance of painkillers, I suppose. I have found it really limiting: I can't open juice cartons, do anything really detailed art wise, do much with my hands in general. Lying in bed or sitting on the couch makes it very, very hard to stand up after and things literally creak. Sleep has been elusive due to the pain, and I suspect my body has gotten used to the extra strength advil (I can't take Tylenol due to allergies); I don't want to take something much stronger though, as I still have to get Aiden back and forth from school.  So, for now, trying a topical cream and playing it by ear. If its still this bad in a month I'll have to get something stronger.

The physical aspects aside though, I have finally come to the decision to seek out counseling - not just for us but for Chris and possibly our little guy.  There are simply too many emotions that we can't handle on our own, going forward. Up to now we were all in battle mode, wanting to take this thing on and come out the other side, and we did! Now we're left with just ourselves again, needing to re-define who we are from this point on and how Cancer changed us.  Last week Aiden got bit by a friend's hamster, and he burst into tears when I mentioned a tetanus shot might be in order; he was convinced he was going to die from it. He isn't, incidentally, as all his vaccinations are up to date - but that wasn't the point. He has been so stressed and we are ill-equipped to really help as much as I feel he needs right now.

I was remembering  Valentine's Day,  a year ago.  I went to pick him up at the school and he burst into tears, his face already streaked with them. I  hugged him and tried to figure out what was wrong, only to have his teacher tell me that he'd had ' a bit of a meltdown' in class when he got no Valentine's cards after he had given out a ton to his friends.  Now, don't get me started on Vday. I hate the pressures we put on one another, and I've always thought it was a horrible idea to introduce it to kids that young. Be that as it may, it had been introduced, and I had a miserable little guy in my arms.  I was fairly angry at the way his teacher phrased it, so I got up and mentioned that we were dealing with a lot of stresses at home so I was fairly sure it had to do with more than Valentine's, thank you. I took him on a long walk instead of going straight to the car; at this point we hadn't told Aiden ANYTHING of our fears and worries, because we had nothing concrete to tell him, but it was fairly evident to me he had been picking out on the stress and anxiety at home and was internalizing it. Goodness knew what sort of things he was imagining - plus at this point I LOOKED six months pregnant, so it was fairly obvious something was going on.

So we talked. And talked. I asked him about my suspicions and he confirmed them; he was worried that something was really wrong because Chris and I were always stressed, unhappy, anxious. I  let him know the basic reason why we were; something was up with mom's belly, and we weren't sure whether it was a Dubi ( something of dubious nature) or a Connor ( what we had wanted to name a brother for Aiden).  So, naturally not knowing was worrysome... but not to stress too much, as I'd just had a visit with the Doctor and would have several tests in the next little while.

He hoped for a Connor, but I let him know that if it was a Dubi chances were it meant something was up with my reproductive system, which would mean no Connors ever. That, to us at the time, was the extent of what we wanted to consider a worst case scenario. He was relieved to know what had been weighing on his dad and me, but I remember getting into the car with him after our talk and having this sensation that I might have just lied to my child. I don't know what it was, but I was pretty sure it wasn't a child in my belly but something much more ominous. I hadn't talked to Chris about that possibility either though... that I might be seriously sick. I didn't want to think about  it.

Life has changed. Now that I am getting a reprieve I am taking life by the horns again, but there are things that will forever be different. I now understand why for some friends of ours some holidays are just not the same. To me, now all I can see is that day Aiden was in tears, that dread that something was very, very wrong within me.  We celebrate love everyday; last year was a celebration of love in the support we gave each other, the love and hope we received from our friends and community.  The day itself - maybe we'll see if  we can  visit my sister and avoid it all together.

Connor was born, by the way.  To our delight Chris' brother and his lovely wife  announced they were expecting not long after our own dreadful news. To our surprise ( since I don't think we ever mentioned our terminology to anyone) they chose to name their baby Connor, and he was born at the end of October, not long after I finished chemotherapy. It might not have been a brother, but a cousin is pretty close!