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. :)

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.

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.

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.

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.