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.

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!!!

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!

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.

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 ( http://convio.cancer.ca/site/TR/RelayForLife/RFL_BC_even_?px=5740486&pg=personal&fr_id=15991 ) 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.

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.