Friday, 26 December 2014

The Apis Bull Myth

If you think that I might be obsessing about turning 40, you're probably right.
Age didn't really use to matter to me until about  the age of 6... when I read the myth of the Apis bull. I burst into tears, and the thought stayed with me well into adulthood.

The Apis bull ( which for some reason I was named after) was killed before the age of 25, to avoid it the troubles of old age ( or so the book said when I read it). I took this to mean that I had to figure out my life and adventures before then, because I was likely to die an early death.  I was a peculiar child, and  my thoughts had a tendency to dwell on the things that I felt I could not change. If it was a given ( and to my mind it was) then I had to make the most of the allotted time; there was no time to waste on things I did not care for.

I turned 25 after I was already living in Vancouver, and it dawned on me that here I was... having made it to the ripe old age of twenty-five. Presumably, the one immutable predestination that I had based a lot of my life decisions around had been wrong. Here I was, twenty-five ( and a day), and had to figure out what I was going to do with the rest of my life.

Little changed. It took me a few weeks of mild panic to realize that the way I lived my life had much more to do with my own needs and dreams than with a terrible possibility. I acknowledged that I liked who I was, who I was becoming and who I loved. This was also around the time that I married the love of my life, coincidentally. I felt like I was whole, and that whatever uncertainty may lay ahead I would find a way to face it.

Cancer came when I was 37, long after I had made my peace with the Apis bull Myth. Long after I'd stop worrying about each day and every dire possibility, preparing for every likely scenario or anticipating the likelihood I could survive a zombiepocalypse. Here it was, the Thing that had been sent to get me. I had thought that at that point I would have seen it as inevitable, but the opposite happened; I had spent so many decades dreading the Thing that went it arrived I was no longer terrified of it. Worried? Of course. Particularly about my son and my husband, but no longer terrified or convinced it was inevitable. I wasn't that lonely six year old anymore, wondering just how I would have to plan out this epic battle on my own.  I was a grown woman, and I had prepared for it with years of anxiety and 'what ifs' plans.

We battled, and won. But for a minute there I thought about the next milestone, the 40th birthday all our friends talked about. How far away it seemed, at 37! I might as well have been 6 and dreading my 25th birthday all over again. So I promised myself ( and my two lovely men) that I would fight my hardest to be there for that birthday, to celebrate it together in style. Because suddenly age mattered, and I wanted to reach it.

I am now 40 years and two days old.  I look forward to the next 40.

Friday, 5 December 2014

Almost 40

My sister pointed out that I had not updated the blog in a while. 'A while' being a good half a year.
Truth be told I have spent the last six months very deliberately focusing my energies on things that don't have to do with PMP, that don't have to do with cancer. That being said, I started this blog with the intention of chronicling my journey and sharing it with others out there. I was ( and am) keenly aware that when people start searching online for clues about pseudomyxoma peritonei, appendix cancer or the cytoreductive surgery much of what they find is distressing. I did the same searches, late into the night when I couldn't sleep. So I promised not to simply stop updating, but to now and then prop up and give a status update. This Christmas Eve I will be turning 40 years old. Some friends joke and say "You're turning 30, right?" and I smile and correct them. I have earned those 40 years, and for a long time didn't think I'd make it to this milestone.

I am, at present, still NED. Not a day goes by that I don't think about how lucky I am, because I have lost many fellow PMP friends along the way . Depressingly there is still scant research and awareness, although doctors, patients and caregivers are doing their best to change this. I am now involved with a local group of PMP patients as well, and education / advocacy are priorities for most of us. How could they not be? We knew so little of this cancer when we were diagnosed, and people's reactions hurt sometimes. I still remember the one person that remarked that I was so lucky, because if they just took out my appendix I'd be cured - wouldn't that be nice?

The reason I have made a concerted effort to step away from talking/ thinking about PMP all the time was because I saw the toll that it was taking on my emotional well-being and my family's. You meet friends and acquaintances and two years later the unspoken question seems to be 'Are you done talking/thinking about cancer yet?' and the answer is no. No, because cancer is never done with you.  Once in touches you there's a part of it that always lingers, like Damocles' sword. The anxiety and fear that luck could run out and the next test change your life again, can be overwhelming. 

With time I realized that cancer wasn't the first thing on my mind in the morning, or the thing that kept me up at night. I could shut it away for a while, and concentrate on living. So that is what I have been doing, focusing my energies and attention elsewhere.

I've often said that the hardest part of my diagnosis was telling my then 7 year old son. I stand by that sentiment. One of the unfortunate by-products of my cancer fight was that I put everything else on hold, on the backburner. I was in the fight of my life, and couldn't focus on anything else.  Our boy's anxiety grew, and we finally found him a counselor to help him through it.  At the time I was going through chemotherapy it became apparent that he was unhappy, disengaged at school. We thought that it may have a lot to do with my ongoing battle ( and I'm sure a lot of it did) but it became apparent over time that it also had to do with a toxic school environment for him. We pulled him out to homeschool, and the past year and half has been about rebuilding that peace of mind that cancer stole from us, but especially from him.

He is doing great now - balanced and happy, studying some classes with me and others at a school that tries to understand his learning needs ( like being a 10 year old doing high school math).  He doesn't blame me for that year from hell, when we couldn't see how much HE was struggling because it was all we could do to hold our heads above water. He tells me often how happy he is NOW, because we have defeated our archenemy, and now we can focus on moving forward. Did I mention how quickly he had to grow up? I catch him now and then, not telling me his own stresses because he doesn't want to add them to MY  plate. He searches for answers in physics and philosophy, for ways to banish uncertainty.

The thing is, two and a half years later we still live with that uncertainty. We always will. Much like his likely educational path, I think our lives are no longer simple and linear. We will have to find our own way, or make it.

Sunday, 20 July 2014

Two years NED

We just returned from my check-up with Dr. T in Alberta, and it was a clean bill of health again.
You don't realize you hold your breath every time, until the words " Everything looks perfect!" are uttered.

This year was a wonderful chance to remake memories too. Two years ago, I was recovering in my sister's home in Calgary, after my cytoreductive surgery. I was weak and couldn't really keep food down, so I was mostly house and bed bound for a bit.

One day I'd had enough, and I asked Chris and our son to take me to the Calgary Zoo, so that I could see it. I was going stir crazy just staying home! We went, but I couldn't eat anything ( except maybe water) as I was afraid of not making it to a bathroom. I was too weak to walk on my own, so we got a wheelchair from guest services and they wheeled me all over the place.

I had also not gotten to see Lake Louise or Moraine Lake, as when we had traveled for our consultation that April they had been frozen over, but they were places I longed to see and was afraid that I wouldn't get to.

This year?
On the way to Calgary we stopped at both lakes, and I took a ton of pictures at both. I got to enjoy them with my lovely dynamic duo and  overwrite those memories. That first time I was in tears that it was frozen over, worried that I'd never get to see it ... and here I am, two years later drinking in the sun.

In 2012 I couldn't walk around the Zoo. I wanted to see it because I NEEDED to see something outside of the house, to make promises to myself of places I would see again.  A. and Chris pushed me in that wheelchair, and we made as good as outing as we could before my energy ran out. 

This year I went with my sister, niece and nephew as well as with my guys. This year we walked, and ran, played and ate ice cream.  We checked out all the animals, laughed and posed in front of butterflies and plants. My memories of the Calgary Zoo are the wonderful ones that now overwrite those of that distant year from hell.

And this year?
My son got to meet Dr. T face to face, hold out his hand and say  "Thank you for saving my mom."

Here's to making wonderful new memories from now on.

Monday, 2 June 2014

A Two Year Anniversary coming up - and Cancer Relay for Life

June 7th will be the 2nd anniversary from my cytoreductive surgery.
It seems really surreal to imagine that two years ago I had a belly full of cancer.  I couldn't envision that a huge surgery grueling chemotherapy later I would actually be NED.

I wanted to be NED  more than anything, but reading the blogs, the statistics... well, I didn't dare to dream that, I suppose. I wanted five years. I wanted time that I could spend with my son, to watch him grow up. Time for research to be done, more treatments developed.

I have gotten that time, and I am profoundly thankful. This coming December I will be celebrating my 40th birthday, and I promised myself that if I made it to 40 I would celebrate it in style. I intend to! I think that this is officially the start of a new stage in my life, once where cancer isn't everywhere anymore.

With that in mind, we decided for the first time ever to attend the Cancer Relay for Life.  Last year I contemplated it, but I just couldn't do it. Everything felt too raw, and honestly I was a mess. Most of the time you can go through your life and function just fine, but sometimes you relieve that trauma.

This year has been about emotional healing for our family. It has been hard in our online support group, as we have lost too many friends and fellow PMP sufferers this past year. It boggles the mind to think about it.

I went to my first Relay for Life, held near where we live. I didn't even tell Chris until I had signed up -- I couldn't figure out how to sign up as a team, so I signed up as me. I did some fundraising, but mostly I wanted to just try and go with Chris and A. and see how we all felt.

We got there early and had a lovely breakfast after I got my yellow survivor shirt. Then we walked the survivor lap -- my guys flanking me, as we reminded ourselves how far we've come together.

 They wore out beating Jelly Belly shirts, and I wore my yellow one on top, where with A's help I had written the names of all the friends I've lost to this damn disease.  I pretty much cried the whole lap, to be honest.

Still, it was cathartic. A. got to talk to other kids whose lives have been transformed by cancer, roll around in enormous 'hamster' balls and realize that we are not alone. That we were never alone.

My cancer may be rare ( boy do I hate winning that particular lottery!) but cancer affects so many people around us. Just being in a stadium with so many people helped to remind us that we aren't alone. I feel blessed by the wonderful family and friends that saw us through that horrible time, and the strengthened relationships that came out of it.

On June 14th we will be at the Abbotsford Relay for Life ; we hope to meet more people, and do a reading of Bellybuttonless in the survivor tent. If you are there, come say hello! We are all stronger together.

Sunday, 27 April 2014

In the Vancouver Sun!

 There are a couple of wonderful articles in the Vancouver sun! They will also be in the print version for today, Saturday April 26th :

Our story and Bellybuttonless (our kids book)

Interviewing Dr. McConnell and some other local patients:

My latest scan was clean, and I am not in yearly MRIs instead of having them every six months.So proud of my little boy ( little man?) and his willingness to put himself out there to share our story and hopefully help other families through it.

Awareness, awareness, awareness!!!

Thursday, 10 April 2014

NED Year two -- Second Verse, Same as the First!!

I promised to post if I got some good news so... here it goes! I met with my oncologist and the news are ...NED!!! All my scans have been since surgery almost two years ago so they will now switch to yearly MRIs ( unless Dr. T countermands that at my summer yearly check up)

I am so excited I could jump, but I think I was a little shell-shocked when Chris took the photo.

Should have some exciting news about Bellybuttonless soon too - I'll post them up as soon as I can. :)

The  Aurora Awards are coming to Vancouver this year! Excited about the possibilities! 

There are lots of stories online, lots of loved ones we have lost along the way. Getting a cancer diagnosis is terrifying, and the net can be a double-edged sword.  Don't forget though - there are good stories out there too, and great outcomes can happen. 

Here is hoping to much brighter days ahead for all of us, and good things on the horizon!

Wednesday, 2 April 2014

Yet Another Respiratory Infection of course!

Minor, thankfully, as I went in to see my GP straight away.

By straight away -- I mean the day after I started feeling ill. I've had two bouts of bronchitis since January, which all developed in the span of 2-3 days. Not having a spleen means I catch more things, and apparently they run amock faster too!

Happily my GP is the same amazing doctor that stuck by us during our cancer journey, and the staff always help me get in quickly. They know at this point how fast things can go where my health is concerned.  I'm currently on more antibiotics, and pushing on ahead. 

I have my next appointment with Dr. J on the 10th to discuss the MRI results. I hate having to wait a couple of weeks, as I sit on pins and needles and I'm pretty sure Chris does too.  I'm a little calmer this time around, as I'm -hopefully- getting good news : If my scan is still clear ( as it has been) then I will get to go onto the yearly MRI as opposed to the 6 months ones!

There may also be some exciting  news about "Bellybuttonless" soon, and I will post once I can share them. I don't want to get my hopes up, but it could be an opportunity to make it more readily available to a wider audience. Really looking forward to that possibility. :)

Spring is just around the corner, and I can't wait.

Wednesday, 26 March 2014

MRI Coming up... and Relay for Life

The day after tomorrow I have my next MRI.  If its clean ( like the others have been) then I get to go onto the yearly ones, rather than every 6 months.

And yet, I'm scared ( pardon my language) shitless.  Every time, regardless how the others have turned out, there is that moment of breathless terror. The possibility that maybe this time they will find something again.

Needless to say, I can't live my life that way and for the most part I don't. I wouldn't have undertaken homeschooling our son and taking on some professional opportunities this year if I was still in survival mode.  My day to day isn't about cancer anymore. Two years later, can I admit to that? However, I am still part of the support group that I found before my MOAS, and in those two years I ache to think how many friends we've lost.  I am one of the lucky ones, but there's always that worry of what happens if the luck runs out?

I find that I am a lot more melancholy this year. Last year I had just finished chemo and dealt with the surgery and the aftermath; I was functioning on survival mode. Last summer, after my appointment with the wonderful Doctor Temple,  we finally made the decision to pull out son from the public school system. It was a leap of faith that has paid off a thousand fold.  He is happy and less anxious, thriving. So am I.  And then the anniversaries started.

( Of course as I'm typing this I got a phone call from the Cancer Agency and just about jumped out of my skin. It was just to remind me of my MRI Friday)

This year we didn't celebrate Purim. I mean, I made the hamantsachen and shared them, but we didn't participate in the school's celebrations or the community one. In fact, we went away for that weekend; we spent it together trying to learn something new - snowboarding.

Two years ago I was baking for Purim, planning to go to the party that afternoon. Instead I had to call my mom to come look after Aiden as I headed with Chris to the ER. Life unraveled after that.

This spring break was hard too; our son is now spending the rest of the week with his grandparent. Its hard not to recall the spring break two years ago, when he spent it all with them on the island while we struggled to figure out how to tell him I had stage 4 cancer.

Passover was spent with all my family at the community celebration here, and I cried all the way through it. This year I've opted not to go and have only the family one, as I don't feel ready for it yet. I think that the emotional impact of what we went through is finally hitting me.

I am writing again. I am drawing again. I am living and learning, and trying new things.  I am reminding myself constantly that  its a process and we're well underway. Some days are easier than others, and no matter where you are in the journey I wish you luck and strength.

This year, however, I feel that I am also ready to honour the journey - the friends we lost along the way, the fight we all gave. I will be participating in our Relay for Life activities ( ) both closer to come and elsewhere in the Lower Mainland. I may even be bringing my book, and sharing my story with others.

I hope that if you found this blog, it has helped a little. I hope you know that for all the heartbreak there are good outcomes too.

Saturday, 25 January 2014

Glorious Antibiotics - and Ode to the Spleen

This is cold and flu season. As one of the things taken out during my surgery was my spleen, every year my family and I get the flu shots. I had a round of different vaccines before my surgery, but unfortunately the lack of spleen will always make me susceptible to infections, and increases the likelihood that they can become serious. As you can imagine, I also try to stay away from particularly nasty plagues that are going around.

Unfortunately a couple of weeks ago my son came back from a sleepover not feeling well. I didn't think much of it until two days later, when I started feeling like crud. For me, things happen quickly. By the third day  I was starting to cough a bit, I felt congested and had overall malaise.  Normally these are the kind of things that most people will  ignore, thinking they are just getting a cold.

If you don't have a spleen however, you NEED to pay attention to your body and get checked out. So, feeling slightly sheepish I went off to see my GP.  She listened to my lungs -- and there was the beggining of bronchitis. I came home with a nose spray, an asthma inhaler ( !) and a prescription  for antibiotics. Her advice was to give the inhaler and nose spray 72 hours, and if I wasn't feeling better I should take the antibiotics, as I couldn't really take chances.

I got all three together and began using the first two. A day later I had a full blown cough and was wheezing like crazy. Although the inhaler helped a bit, I kept feeling worse and worse... so on the third day I started on the antibiotics. 

If there was ever a RAMBO equivalent in antibiotics, I have to say these are probably it. By the 2nd day of taking them I was feeling GREAT. I still  had to finish the 10 day dose, which meant I couldn't drive- you have to always check interaction with other medications- but by the time I saw my GP the following week I was doing just fine. If I hadn't taken them and the other medication when I did, I could've likely ended up with pneumonia.

Not everything needs antibiotics. Not everything needs a visit to your doctor. But -if you have a compromised immune system, listen to your body. 

Tuesday, 7 January 2014

And Love Remains the Same

Happy New Year!

When we first found out I had PMP back in March 2012, searching for blogs was a disheartening, heart-breaking experience. My husband made me promise that even after treatment finished I would continue to update the blog at least once a month - so people would know if I was doing well, or any other issues that came up.  

Where an Apis bellyaches

I'm feeling under the weather.  I'm writing about feeling under the weather because I hadn't really felt sick since the end of chemotherapy in late 2012. It strikes me now that all the different plagues I caught in the year leading up to my cancer diagnosis were probably due to my body fighting the cancer as it spread. No wonder it was spread thin.

This current crud is probably only a flu. I get the flu shot every year, but since I no longer have a spleen since the MOAS my body seems to have remained immuno-compromised. Feeling inordinately crappy I went in to see my GP -- who put me on an asthma like inhaler, a nose spray and antibiotics I should start in 48 hours if the first two haven't cleared things up, as apparently there's inflammation in my lungs. Wee. I also have to go back in a week to get checked AND also discuss the results of my latest bloodwork as apparently the liver enzymes continue to prop up.

TMI, and a lot of whining - I know. I am happy that I can whine about it. I have learned the hard way that ignoring your body, discounting symptoms and simply gritting your teeth and carrying on is not necessarily the best course of action. You are the best judge of when your body feels off; you know when something is up, and should listen to that gut feeling.

Two years ago ( two years ago!) I was feeling really sick.  I was coming off a nasty bronchitis, and absolutely drained... most of the day ( while my son was in school) I was sleeping as my body marshaled what strength it had to fight. I didn't know it yet. By Valentine's I would know that something was definitely WRONG -- and by early March the enemy had a name, cancer. Pseudomyxoma Peritonei... what a mouthful. By April I had been referred to a specialist, the wonderful Dr. Temple in Calgary. By mid June I had undergone the cytoreductive surgery, by  November finished the additional chemotherapy  ( I stopped after 4 cycles of the suggested 12).

Suddenly its January 2014 and HERE I AM. I didn't think I was going to make it to my 37th birthday, and I've just turned 39.  I'd do it all over again if I had to, but I really, really hope that I never do. There are organs that I missed more than others ( we had always hoped to give our son a sibling, and now we know why we were unable to), I count my blessing each and every day.

2013 was a rough year, as several fellow pmp friends passed away. 2014 starts with similar heartbreak.

The last couple have been particularly rough - young fathers, amazing people. When I was diagnosed, I thought that I was too young to get this type of cancer... and then met and interacted with people much younger than me. They will be missed. How can then not be? When they were kind, and funny, strong and brave. They leaves children behind that are much too young.  I hope that those they live behind  know how they were loved. That love is not destroyed but transformed, and may the memories of that love wrap around them always.

I am really hopeful that Dr. McConnell being in Vancouver means that some of the families with younger kids will have a fighting chance... a way where they won't have to travel out of Province and be far away from that support and energy that your loved ones provide.

I hope there is a day where no child loses a parent like this.