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.

Tuesday, 7 April 2015


That year, our son didn't smile. Rather, the corners of his mouth moved upwards but his eyes -- those sweet dark eyes so similar to mine -- there was no hiding the ache in those eyes.

I found a photo of  him holding the happy place sketch I'd made for him; he's smiling, but his eyes tell me that he didn't see that happy place, not yet.  I want to cry each time I see them, because I know that I'm the one that put that sadness in his sweet little heart.

That was three years ago, and it feels like a lifetime. I see him now, and hear his laugh. I see his eyes, still sweet but full of confidence and joy. Of hope. I see those eyes and count my blessings every day, that I have had the chance to spend this time with him.

We're moving on, as much as we can. This home, this house I feared to lose when I got sick, has been a lovely refuge. It has allowed the three of us to regroup and heal together, to homeschool our son this past year and a half until we found a school that suited his needs. 

About a month ago we received notification that he was accepted into the program that he hoped to be part of, and will be starting middle school there in the fall. Its not far, not really -- but it does provide the necessary kick in the pants to get us to move. We've listed our home, and hope to find one a bit bigger close to the school.

No more being in a holding pattern, no more wait and see. Whatever comes our way we'll find a way to handle, but for now we have to live life to the fullest and chase our hopeful futures.


My sweet little man at 7 -- and today:

Tuesday, 10 March 2015

Happy Spring. :)

My doctor called to let me know the results of my latest MRI - NED. I love, love hearing that.  I want so dance, and sing, and scream it from the rooftops. Instead I think I'll garden and cuddle with my little man and my half orange, and celebrate.

Three years after original diagnosis, dear friends, doing just fine.

Thursday, 19 February 2015

New Year's Pneumonia, but much better Chinese New Year!

Gong Hey Fat Choi! May this year be healthy, happy and adventure-filled!

2015 started with a whimper, as a couple of illnesses floating around the holidays developed into an infection and pneumonia by New Years Eve.

That was followed by 2-3 weeks of doctor visits, labwork every few days ( which white blood cells and platelets out of whack) and one fun ER trip when I passes out while having my blood drawn.

In the end, I had to rest, take liquids ( and lots of nutritional supplements), antibiotics... and rest some more. Its hard to admit how quickly one's body can go downhill when under attack, and it was a good reminded for my loved ones ( and me) about exactly what a suppressed immune system entails.

I am now pretty much back to my usual, thanks to taking it easy and B12 daily. I am also staying away from pretty much anyone that has so much as a sniffle.  I think that sometimes its hard for people to understand how serious it can be, and how quickly infection can take over.

February was by far more positive - having slowly gotten over that plague life started settling into routines. This month our lives weren't about cancer anymore. We focused on other projects ( personal and professional) and definitely turned our attention and energy to my son's well being and happiness.  He was only 7 when I was diagnosed, and a lot of things had been put on hold while we battled the PMP monster. This past Fall we all finally got to a place where we are ready to face forward and take leaps of faith in pursuing all our dreams, taking on different adventures.

My little man has grown up a lot these past three years. When I remember him that Valentine's day, heartbroken and uncertain about what the future held I can't help but say thanks to G-d, to our friends, to science and all the amazing doctors and people in our lives. They helped us get to this point.

My next MRI is Monday, and as usual I am anxious and stressed. I've come to the conclusion that I will always be! But that's okay. There are other things in the horizon now that we will all hold onto. :)