Thursday, 13 December 2018

"You have no power over me..."

That key phrase from the movie Labyrinth has always stuck with me. 

There are so many things in our lives that we cannot control - so many things that happen without rhyme or reason, and oftentimes you're left gasping for breath as you try to make sense of things.

You -can- control how you react to them; what you choose to do with the set of circumstances you've been given.

When I was diagnosed it felt like all control over my life had been taken away; everything was in limbo as I had to close my business, as we struggled to figure out what sort of long term impact there would be to my health and to my family, my husband and son.

It has been six and a half years now, and I am still NED. It feels, tentatively, like the proverbial sword of Damocles has finally been lifted from over my head.  Now - I know that fear and that threat will never entirely go away; recurrence is always possible, but  it hasn't happened yet, so I am no longer living in the shadow of it.

Yesterday I met with my oncologist to discuss my MRI and a chest Xray they had me do just in case, and both were ( thankfully!) clear. After some discussion I am now moving to scans every two years, and after ten years have passed from my surgery if I am still NED they may discontinue them. Of course, should there be any sort of symptoms I am to call them right away.

This year has been hard on a number of fronts, but also immensely rewarding personally and professionally. For the first time since diagnosis I am getting back the person that I was before cancer made its unwelcome entrance into our lives.  My husband and son are thriving, finding their own joys and adventures, sharing others with me. I am in the middle of writing my third novel, after finishing the sequel to my first book earlier this year.

We're getting to enjoy remembering what a team the three of us are, having made it through that fire and many others that came our way. That despite everything we are strong, capable and will always be there for one another. What a joy it was this past short while to head off to Costa Rica for a very informal vow renewal, just the three of us! Twenty years together, eighteen married -- and our son, our mature, kindhearted, wonderful son.

We are pushing ourselves out of our comfort zones to try new foods, new experiences and not feel health issues limiting me anymore.

We went ziplining, learned to surf; we saw amazing creatures ... sloths, iguanas, birds everywhere... we are making amazing memories and recharging our batteries for whatever comes our way next.

Counting our blessings, living our lives. Thriving.

Happy holidays, everyone. May they be healthy and happy, and looking forward to a wonderful 2019.


Thursday, 7 June 2018

Six Years

Six years.
Today marks six years since the day they wheeled me into my cytoreductive surgery in Calgary. There was always a risk that I wouldn't wake up, always a risk that they couldn't do anything. Always a risk.
I held my husband's hand tight and thought about our son. When we'd met with my doctor I'd asked him for five years. Just five. A. was 7, and so little. If I could have five more years I could  help him through  some rough waters ahead. We could have adventures and experiences together, the three of us. We could grow together and make memories to wrap around like warm blankets in the night.

My surgery went amazingly well. Miraculously they got it all, and chemo followed up ( just in case). I asked him if I'd have those 5 years, and he said there was no reason why I couldn't have ten, or twenty. That life sometimes gives you that best possible outcome - I am so thankful for it.

Six years ago I didn't dare dream about the future. I mourned the things that I would miss, the milestones with my son. I struggled to think ahead of how I could prepare him and my husband for a life without me.  When I woke up after surgery ( I use the term loosely, as I have practically no memory of the first few days thanks to anesthesia) all my thoughts went back to the two of them. Once I was in a room I was able to have my family put up pictures of my son... his drawings, his sweet smiling face. That was what I looked at every day, what made me get up and walk around the ward, what made me push myself to hope and heal.

These past six years I had the opportunity to really focus on our son. Still a work in progress, as no family escape unscathed from a cancer battle. It affects us all.  A. is thriving; resilient, determined and overall kind, our son surprises me every day. I give thanks every day for the privilege of spending time with him and Chris, for all the adventures we have shared. Fall of 2016 I even got to go with him to film a movie overseas for 2 months -- and despite all my worries my health was fine.
In a year or so he'll be graduating high school ( early for his age) and he has grown into an amazing young man.

We're looking forward to the future. To the plans and adventures, to the hopes and dreams. Hope never left us, but now it feels like we are free to dream again. <3



Wednesday, 22 February 2017

Valentine's - and almost 5 years out!

I had a comment to the blog recently and was reminded that I have not updated this blog in a while!

I'd promised that I would keep doing routing updates so people are able to see what may be down the road. :)

I had my MRI last week, on Valentine's. I won't get the results until Mid March when I meet with my oncologists; knock on wood it will still be NED, as it has been since my cytoreductive surgery and chemo in June 2012.

Five years. This summer it will be five years, and that milestone humbles me.  My son is now twelve, and I am incredibly thankful for all the adventures and experiences we have gotten to have together. I look forward to many, many more, and thankful for every single day.

Tuesday, 7 June 2016

And four years later! :)

 I promised my husband when we started this journey that I would periodically update, so that people searching for pseudomyxoma peritonei or appendix cancer could find it. When I see that I haven't updated in six months I have to say that is a testament to our busy, happy lives.

Four years ago today I was in surgery. I was desperate and terrified, but I also had a lot of faith in Doctor Temple. I knew he would do what he could, and the rest was entirely out of my hands. Sure, chemo would follow, and any number of other treatments if needed, but  there was the very real possibility I might not wake up from the surgery, or I may wake up to discover that they hadn't been able to help.

I can remember the sleepless nights, the agony of thinking that I wouldn't get to help my son grow up, meet so many milestones. That I wouldn't get to share with my soulmate, best friend and husband, so many adventures I still hoped to have. But there was also determination that whatever I -could- do to affect that outcome, I would. I have never been one to go gently into that good night, I suppose.

The past six months haven't been about cancer. Not that it ever really leaves you, mind, because it will always be that ghost at the door; it moves through our house and lives and leaves it mark.  I was playing a cellphone game the other day ( bunches of bubbles you have to connect) and one level had these grotesque bubbles that become jello like, distorted, and infect the others. I couldn't' keep playing, and deleted the game in tears, shaken. Sometimes the things that trigger those emotions are hard to predict.

Those moments aside, these past half year has been about so many other things BUT cancer. About busy lives and opportunities. We took the leap to move away from comfortable routines and take chances in work and life again. Last year we moved houses and my husband took a different job, after ten years at the old one.  Our son has been focused on his acting and his academics; he won an award in LA and has been pushing forward to chase his dreams. He starts a special program in September.. high school! Moments that I didn't think to see, or celebrate. Next week will be his middle school graduation and I'm pretty sure I'll be crying most of the day!

As for me, I've been creating again. I've been pushing out of my comfort zone in my art and experimenting, I've been doing script writing and producing a couple of short films. I've stopped obsessing about the what-ifs that tomorrow could bring and work on enjoy today more.

Four years on, we feel alive again. Here is to many, many more!! <3

Friday, 4 December 2015

The Dreaded "What If?" of Feelings and Grief

It has been a challenging few months in our home, while we embark on new challenges and adventures. Thankfully still NED, but as my scans are now every year or so, I won't have my next one until some time in February. In the meantime I've had two bronchitis in quick succession since October, so my immune system has taken a beating. All in all though, we are adjusting to changes and to living in hope instead of fear.

That said, it hasn't been easy.  Much of my focus this fall has been on helping my son; back in the public school system  he has had to deal with a series of stressors and anxieties that spiked lately.  There are so many things that I won't go into here because I promised to keep his life as private as I could when I made this blog; however, with his blessing I can talk about a bit what he is going through in regards to this whole Odyssey.

People expect that we should move on. I suppose we did too, once. That we deal with cancer and then is on to the rest of our life. The reality, however, is more complicated.  Cancer changes who you are, permanently. It also changes your family and loved ones, because you are not the only one affected. Their entire lives changed too, and it takes time to process that.

We had been working with our son as we knew he was still repressing a lot of his emotions. More and more he has started to allow them out, hating that he can't control them.  I am reminded of my childhood days when I longed to be Spock, simply so I didn't have to feel everything so keenly.

Last night I went to say good night to him - only for him to start weeping openly, heartbroken and terrified at the thought of losing me. I told him I wasn't going anywhere - I was here, and even if I wasn't he had his dad and our wonderful family who would always be there for him.  I didn't want to give him platitudes, because I hate when people do that. Everything does NOT happen for a reason. Sometime horrible things happen, and the best you can do is endure them and survive.

All that time, we were surviving. We were putting one foot in front of the other and finding a way to move forward, to hold everything together. We became an inseparable trio, a team that can tackle everything together.  And we made it. It may only have been three years NED and life has no guarantees, but we have made it this far together.

I am both relieved and heartbroken that he can finally express that pain, that anguish and that fear that he bottled up for so long. I know that the two years homeschooling were incredibly healing for all of us, and I think they helped him get to this point. We are working with a wonderful psychologist for now, and trying to find our way.

At school our son expressed some of his anxieties, to be told it was the 'October Meltdown' that sixth graders experience.  What a way to downplay his experiences, and the depth of his pain. We talked about coping strategies, where I tried to explain that really, he has coped brilliantly with much more than many there can comprehend... unless you have walked in similar shoes.

He is finally grieving, I think, for what he lost. Certainty, safety, a bubble of reassurance.  We were discussing his acting lately, when someone mentioned that he just doesn't 'read' young enough ( even though he just turned eleven). He comes across as too mature, although a certain playful innocence was gone. Of course he does. That was ripped from him at age seven, when he had to contemplate a life without his mother.

Last night was very hard on all of us, because it showed us how raw those wounds still are. How much pain and fear we still carry, how tentatively we are finding our own roads. We are a work in progress, after all.


Wednesday, 9 September 2015

Choosing Hope

I step away.
I touch your hands and find
the whole world is our love story
every breath and cry, and laughter

every glance and smile and smirk
I became you, and you became me
and we flew...

My heart is breaking today, with another friend lost to this disease. Taken, but never conquered. Every step taken with strenght, with kindness, with grace and love, but still taken.  I sit here crying because life is unfair, and it breaks my heart to hear of friends diagnosed, of friends fighting this beast, of friends losing that battle. But the love... the love survives. The impact of their lives in everyone they touch, everyone they loved, everyone that was honored to be part their journey, goes on.

A friend recently asked me if its common to be depressed or anxious after cancer treatment. I can only speak to my experience, but this is part of my response to her; I'm sharing it here in the hopes that maybe someone else out there is feeling that too -- and knows that they are not alone.

It can be. Everyone is different, but many of us can end up with anxiety, depression on and off or PTSD. What you went through is very traumatic; the body heals a lot faster than the spirit/mind/ soul. For us it wasn't just me - everything we went through gave my little one really bad anxiety bordering on PTSD. We got him a counselor that has worked wonders, but for all of us its a process. Some days are better than others.I haven't gone to a counselor yet, but I plan to over the next few months. I think that once you stop functioning on survival mode the full emotional impact hits you, and it takes a long while to sort out. You're not alone!
My grandparents were survivors of the holocaust. For a long time any time I felt depressed I felt so guilty that I could be feeling that way, when other people had it worse. The thing is, that other people feel worse doesn't negate what YOU are feeling. I asked a friend once when things return to normal, and she told me that they don't - life changes permanently once you've battled cancer. However, you DO find a new normal... a balance with who you are now. As for survivor's guilt I life with that too... so many friends that lost the battle, and here I am. I figure that living my life well is the best way of honoring them, and that includes taking care of my wounded heart.
You fought a war, and the scars linger. There is no weakness in seeking help. I have found my balance in a support group, but more and more in focusing in things that bring me joy - my son, my art, plans of the future. It took me three years to dare to dream about the future, but I do that again. I'd encourage you to talk to a counselor, to find a local support group and get back into doing the things that bring you most joy.
 Yesterday I walked my son to his first day of Middle School.  This was a milestone that I was not expecting to reach, as three years ago the initial diagnosis was that I would be lucky to stick around for two. I wanted to be there for his first day of middle school, for his first girlfriend. I wanted to be there for his barmitzvah, for high school graduation, and his wedding.  I didn't dare to dream that I would actually see any of them, but I really, really wanted to.

We have moved into a new, lovely home, where I can grow roses and my grandma's gooseberries. Where he has his grown up room and dreams of university and Paris (??), and the day we will visit him there when he's a working professional, either in quantum physics or acting.

Tomorrow - tomorrow is my 15th wedding anniversary. I still remember our vow renewal for our 12th - done casually with some of our beloved friends here.  I was afraid I would not be around for our 15th, and I wanted to make sure that we made those memories together.  Last week, just after we'd moved into our new home, a huge windstorm went through the province - lots of people without power ( ours was out about 5 hours) and our vegetable garden was hit pretty hard. All our tomato plants were destroyed, so after it was over we went over and collected every single green tomato.  We weren't ready to simply give up on them, after everything we had done to help them grow and produce their lovely fruit. We came home with about 50 green tomatoes, which have been ripening nicely on the windowsill of our new home.


I am choosing hope, and living for the future and whatever it brings. Tomorrow, tomorrow. I believe in my tomorrows.






Monday, 20 April 2015

Spanish version of Bellybuttonless is out! :)

After several requests, Bellybuttonless and its Spanish version, Sin Ombligo, are out for distribution. They can be found on Amazon. :)

We have also donated some to the BCPCN so that local parents that are diagnosed have access to them. More information about the BC Peritoneal Cancer Network : http://bcpcn.cancersurgeryvancouver.ca/


This  was a labour of love, and I am really glad that it will be able to reach more people now. My hope is that will be able to help families through very difficult journeys; its creation played a role in the emotional healing of our family.