Friday 26 July 2013

Stage IV Breast Cancer is Not Severe and Prolonged

When I started out on this adventure with stage IV breast cancer my goal was to be a part of the <1% of patients that go through treatment and end up "cured".  Or, in the more realistic terms of a stage IV cancer patient end up on long term treatment and every 3 months my scans continue to show no evidence of disease, I live a really long time, and eventually die of non-breast cancer related causes.  That is when I would know I was "cured".

While I have been undergoing treatment I was first on short term disability and right now I am on long term disability.  As a part of the conditions to be on long term disability I was required to apply for CPP Disability.  I finally received the decision from CPP and it was decided that my disease is not both severe and prolonged and thus I have been denied.  Hmmmm.

Severe means that I have a mental or physical disability that regularly stops me from doing any type of work.
Prolonged means that my disability is likely to be long term and of indefinite duration, or is likely to result in death.

I am guessing that the denial is because I don't fit into the severe category at this point in time, but I am wondering if the government of Canada has been holding out on us.  Perhaps they have a cure for cancer and they haven't been sharing it. Perhaps stage IV breast cancer really is unlikely to result in death.  Wouldn't that be fantastic?!?

Really, the wording of the letter is so stupid, at least tell me that I fit into the prolonged category even if at this time my disability is not severe.
And now I have to appeal the decision.  Yippee.  If I don't appeal it, my long term disability company will assume that my appeal would have been accepted if I had sent it in and will cut my benefits by the amount CPP would have paid me.  Grr.
At least I am fortunate enough to have disability insurance even if involves a lot of paperwork and an endless supply of hoops I must jump through.

Ok, I have shaken that off......now onto a more fun topic, the Canadian Breast Cancer Foundation Run for the Cure. It's October 6th.  Save the date!

I have already had a few questions so I am sure there are more of you out there waiting for me to respond to a comment someone left a couple of posts ago about only 15% of the money raised from the run going to breast cancer.  Here goes.........

My first thought was "huh, I haven't heard that 15% quote in a while".  I am the first to admit that I was not a big supporter of a lot of cancer causes before I managed to get nailed by cancer myself in part because I felt that not enough money went to research (and I know a few people out there are nodding their heads in agreement, I know who you are:P).
I have to say that I have changed my tune in the last year, especially after experiencing my first Run for the Cure.

I think part of the reason the Canadian Breast Cancer Foundation and in particular the Run for the Cure has gotten such a bad rap is because the event really is not well named.  The problem is the "Run for Breast Cancer Education, Awareness, Easier Screening Access, Earlier Detection, New Treatments, and Support While Letting Breast Cancer Patients, their Family, and Friends Have a Day Where Thinking about Breast Cancer is Actually Kinda Fun" is not really a catchy name.
But really, that is what the run is all about, it is not just about research or just about finding a cure.

(And there is a bit of a backlash in the breast cancer community about the pink products.  It is sort of trendy to be anti pink, but that is another post for another day.  But I do stand by the fact that pink is not my favourite colour but that is for totally non breast cancer related reasons, just a simple ugh, pink.  Red is so much better.  Pink is just a washed out red, so boring.)

If the run wasn't fun do you really think it would be one of the largest one day fundraisers in Canada? Maybe it isn't money well spent but those little pink ribbon temporary tattoos are fun, they get people more involved, they get the kids involved.  All of the handouts, the nail files, the note pads, the pens, the bookmarks they cost money but they are about breast cancer awareness and education, and fun.  And breast cancer needs more fun.  After all, the Run for the Cure is a fun-draiser, right?  Haha, sorry, I walked right into that one.
And it is a day that breast cancer survivors can get together, share their stories, create hope for our newly diagnosed sisters, and few brothers out there, that they too can be a survivor.  Although, as a stage IV I have to admit I think of myself more as a coper than a survivor.  I think I have said this before and I will say it again, it hard to be a survivor when waiting for the other shoe to drop and hoping it never does drop.

Alright, I'm off the soapbox yet again.  Seems to be a popular place for me:-)

This year's team.........The Red Devils.

I am a co-captain this year and as a more active participant I did not want the team named after me but I was looking for something cancer related.  Red devil is the nickname for adriamycin, the red drug that was my first chemo drug and was so good at blasting cancer cells.
Abby, my fabulous co-captain, and I are aiming pretty high this year.  We are hoping for a larger team and the goal is to raise 10% more this year than last year.
There is talk of another bake sale.....I know that was pretty popular last year.  And hopefully I can steal someone from another team who is a great fundraiser with her Mugs for Jugs Pub Night.

In the meantime, start signing up!  And if you aren't in Vancouver please donate.  Here is the link to our team page: http://www.runforthecure.com/site/TR/RunfortheCureFY14/BCYukon?team_id=58347&pg=team&fr_id=1696

Thanks everyone in advance for all of your support!!!

Monday 15 July 2013

One Year and Counting......

Saturday marked one year since my diagnosis.  As the day was approaching I managed to find lots of fun activities to prevent myself on dwelling on the might-have-beens of my life if I hadn't got cancer.

Ian and I were in Tofino for a wedding at the end of June.  The  weather was not the best for the trip over.....



And here is the eagle on the way out of Nanaimo, or maybe into Nanaimo, I can't remember exactly where it is now but we drove past it after we got off the ferry.


We stopped in Coombs at Goats on the Roof and bought some yummy cheese.  Due to the weather and having not mastered the camera on my new phone my picture of the goats did not turn out well but with some computer touch ups I have something:


We spent one day 6 miles off shore doing some charter fishing and the weather was much improved.  I caught my first halibut. Yum.
We had spectacular weather for the wedding right on the beach:


We left the next day and the weather was back to rainy.  We stopped at Long Beach


 and Sproat Lake to see the Mars water bomber since we had time on the way back to the ferry.



The wedding weekend was pretty exhausting so I didn't leave the apartment much for the following 4 days.

When Canada Day rolled around it was off to the Salmon Festival in Steveston.  Our freezer is full of salmon though so I did not actually eat any salmon while there.  We did see some cool boats though.  Sorry no pic, I didn't try hard enough to get a good one.

Then finally for this past weekend, the big anniversary weekend, Ian and I took in a baseball game.


The Vancouver Canadians are a minor league for the Toronto Blue Jays which makes the games a little more fun.  The Canadians beat the Boise Hawks 8-4 that day.  One interesting side note, Wayne Gretzky's son Trevor plays for Boise.

On Saturday my fabulous friends Keetah (she is the famous for cutting my hair short and then shaving my head when I first started chemo) and David were over for a salmon barbecue.

And Sunday was the Weiner Dog races at Hastings Race Course.  Always a fun time and I even won a few dollars.  I guess I was finally due for some good luck!

So, now that one year has come and gone it is time to start working on the next year.  My next bone scan isn't scheduled until the end of August and my next CT scan will be around then. My next visit with my oncologist isn't until the beginning of September. That means I can enjoy the entire summer and not think about what the results of my scans will be.