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!

NED!!! - No Evidence of Disease!

Dr. J. called us to come in today, as the results were in the system so he could share them with us before the holidays. Needless to say, we were so nervous!!

The results... NED! 'No Evidence of Disease'. Though  in the case of PMP re-occurrence is fairly frequent it may not happen for many years. Every 6 months I will be having an MRI, and checking... but for now I feel so incredibly happy and free.

Next Monday is my 38th birthday, and I will celebrate it with an enormous cake.

Bless you and thank you all for your support, your kindness and prayers, your good energy. We couldn't have made it through this year without you!!

HAPPY HOLIDAYS!!!!!!

No news is... no news

Thank you for the  good wishes and good energy!
I have been in hermit mode today, to be honest, but I thought I would post up since I have been fielding this question.

MRI went ok. It was a really strange experience; I could understand why people feel claustrophobic. You're strapped in and put in this... tube? Then really loud, frightening noises are all around you in intermittent bursts. I think I was there about 45 minutes, but its hard to tell.  I was pretty happy that I'm a sci fi fan and could get my mind to turn the noises and place into something else entirely; my favorite was imagining I was in a torpedo tube or some such. Maybe I was a stowaway on the Enterprise? At any right trying to think of plausible scenarios helped me pass the time, and it certainly kept me from panicking.

It DID help to close my eyes though, so if any of you are heading into your first MRI that would probably be my one recommendation.

As for results - no, I don't have them yet. We asked afterwards how long they usually take and were told about a week, but usually longer during the holidays. I do know that Dr. J had put a note to please read right away, so I'm still hopeful we may be able to get them before my birthday on the 24th.  I want to celebrate it with a NED ( hopefully!) or at least knowing what may be in store for us the next few months.

So - no news.  I'm actively ignoring the phone because honestly it just stresses me out to talk about it when there are no news to share. Sometimes waiting is the hardest part.

Anyhow, I will post up once we DO have anything to report, good or bad. All part of the journey, right?

Scanxiety

As a friend  in our support group dubbed it.

My scan ( MRI) is coming up on Monday the 17th. Not sure when I'll be getting the results, as its taking place so close to the holidays.

As one might imagine Chris and I aren't sleeping very well at the moment, anxious about what the scan might show. Is the cancer gone? We know the chance of recurrence is high, but we have also met people who haven't had it, several years out from their MOAS.

So here's hoping, oh here's hoping!

We are at ease with the knowledge that we did absolutely everything we could think of this year. Hopefully it pays off, but if it doesn't there are still alternative therapies to try.

Still... if you have a few moments to send a prayer or good energy my way on the 17th, much welcome and appreciated! <3

Kids Book - Bellybuttonless

The kids book that Aiden and I were making together is finally finished. :)
It was a good distraction for the past couple of months -my scan is in less than a week, so I'm nervous but passing the time finishing off a few projects.


 The whole reason for this book  was to tell our story and help other families with kids start a conversation. To date there was nothing harder than telling my son that I had cancer; nothing I dreaded more than answering his questions, or worrying about his fears. Talking about it helped us all though, and it was one less weight for our family to carry. Being able to  tackle it honestly ( without excessive detail) helped us make it through this journey.

The printed book I am self- publishing through Lulu, and will be available in 2013.  You can find it here:

http://www.lulu.com/shop/a-teicher/bellybuttonless/paperback/product-20564363.html

It isn't a catch all book, but it is a labour of love. I hope that it can help some of you that have contacted me since I started this blog!

Here is a list of wonderful organizations to donate to:

• The BC Cancer Agency
• The Tom Baker Center ( Calgary) - surgical oncology department
• http://www.pmpcure.org/ ( PMP Research foundation)
• http://www.pseudomyxomasurvivor.co.uk/ (In the UK)