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.

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.

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!

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.

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

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.

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!