Thursday, 29 August 2013

FIngers Crossed and Waiting

So, the big thing in the news this week.......Miley Cyrus.  Betcha thought I was gonna say Syria and did they or did they not use chemical weapons but I'm like CNN, I'm just going for the page views;-)

Actually, big news on the cancer front, it is another week of waiting.  Now that summer is almost over, and it really feels like that in Vancouver today with endless rain and a rainfall warning, it is time again for CT and bone scans.
This time around my stress level is way higher.  From what I have heard from lots of other mets patients it is pretty typical to get 6 months out of a treatment.  After that all bets are off.  Now, there are rumours circulating in some online communities that by having dual treatment with Herceptin and Tamoxifen increases my odds of having a longer period of time before the cancer shows up again.  I haven't been able to find any studies that actually say that but here's to hoping!

And, I like to keep in mind the few women I know of that have been on Herceptin for 10 years.  They truly give me hope.

I had my CT scan on Monday and my bone scan on Wednesday.  All sensors were working so yet again I did not get squashed.  I do have a short moment of panic when the plate for the bone scan machine first comes close to my face.....is this when the sensor will fail???
I see my oncologist next Wednesday to get the results.  In the mean time I am trying to stay as busy as my fatigue will allow.  Anything to prevent me from having time to dwell on the possible results.

While we are all on the edges of our seats waiting for next Wednesday to roll around here is my chance to remind you once again of the CIBC Run for the Cure on October 6th.  Please join me and my team, the Red Devils, on the day. Or, if you can't be here please donate.  Here's the link to my personal page:  http://goo.gl/bQ2ghV.

The long weekend is almost here, yay! Everyone have a safe and fun Labour Day:-)

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.

Tuesday, 25 June 2013

Breast Cancer in the News

And no, I am not leading off with Angelina Jolie.

One of the big news stories for cancer patients and heart patients is a breakthrough announced recently by TRIUMF in combination with the BC Cancer Agency.  TRIUMF is a research group originally created by a joint effort of Simon Fraser University, University of British Columbia, and University of Victoria.  Over the years other universities from across Canada have also joined.
The research is geared to particle and nuclear physics.  And back during my days at UVic it was a major employer of co-op students.

The TRIUMF group announced that they have developed a new method for creating the medical isotope technetium-99m (Tc-99m) that is used in CT scans, bone scans, and some heart function tests as well as other nuclear medicine procedures.  There has been a shortage of medical isotopes for several years now due to aging nuclear reactors and in particular the shut down of the Chalk River reactor in Ontario.
The new method uses a medical cyclotron built in Richmond and is able to produce enough isotope for a city.  The cyclotron is small enough to fit into a single room so large cancer centres across Canada and around the world would be able to produce their own isotopes.  One added bonus is this new method decreases the dependence on nuclear reactors that use weapons grade uranium in their isotope production.

I heard recently that some of the funding for this research came from the Canadian Breast Cancer Foundation so this is a good time to mention October 6th.  Save that day for the CIBC Run for the Cure.  I will be participating again this year and I will have details some time in the next month or so  about my team for those of you who would like to participate and for everyone else to donate;)

Okay, now back to Angelina Jolie and her fake boobs.  As I am sure everyone in the entire world has now heard Angelina Jolie was tested this spring for the genes BRCA1 and BRCA2 that are the most common hereditary causes of breast cancer.  It was determined that Ms. Jolie was positive for the BRCA1 gene and her risk for developing breast cancer in her lifetime was somewhere around 80%.  To protect herself she decided to have a double mastectomy and, I assume, reconstructive surgery.

One this first came out in the news many people that knew my story asked me what I thought of having a proactive mastectomy like that.  I admit that my initial reaction was something along the lines of "really? Weren't your boobs already fake? Does anyone really care?" And of course it was all over the news and it was a pretty common topic of conversation for a few days so apparently a lot of people did care.

My next thought was "wow, I hope a whole bunch of women don't decide that BRCA screening is the latest and greatest thing since Botox and don't all run about demanding testing.  BRCA1 & 2 breast cancers are at most 10% of all breast cancer cases so it is not a factor for most women.  From what I have heard at the BC Cancer Agency, in general, if your mom did not have breast cancer most doctors would not ever consider ordering the testing in Canada.  In the States patients often seem to be more demanding of testing so down there it is possible there will be a spike in genetic testing.
On a side note, an American judge, or possibly the Supreme Court, recently decided that a drug company is not allowed to patent a gene.  This means that the first company to create a test for a specific gene will no longer have proprietary rights to testing that specific gene.  This is helpful for patients wanting BRCA testing done as the cost for testing a few months ago was $3000-5000.  It is expected that that cost will drop significantly in the very near future if it has not already started to go down.

Once I got beyond the notion of why does anyone care about an actress and her breasts I actually thought about what I would do if I were in the position of being healthy and knowing I was BRCA1 positive and my risk of breast cancer was 80%.
My very next thought was "are you kidding? Who wouldn't chop off their breasts?"

Looking at the situation from my own experience, I don't even know what the cut-off point would be for me to decide a mastectomy was not the best option, 50%, 25%?  I really don't know.  After everything that I have been through and the stress and upheaval to my life, my family, and my friends, I have to say that 1 in 9 women gets breast cancer.  Why doesn't everyone just chop the damn things off at 30 and be done with it.  So many women go for implants these days, what's a few more fake boobs running around?

I know women that test positive for one of BRCA genes start getting yearly mammograms much earlier than the standard 40, but based on my experience and the speed at which the tumour grew I am not totally convinced a yearly mammogram would be sufficient.

I say, do the mastectomy while you still have all your options.  You can decide what sort of reconstruction you want and the surgery can be designed around the reconstruction rather than just cleaning up the aftermath of tumour removal.  Or, as in my case, not being approved for reconstruction at all.
I gotta say, prosthetic boobs really are a pain in the ass.

That's it for now, I have jumped off my soapbox.  And don't forget October 6th!

Thursday, 6 June 2013

New Boots and a Dentist

HAHA!!  I don't know which is more exciting, my new stable boots:

Aren't they pretty?
or the fact that I went to the dentist today.

Ok, I know that is weird that the dentist is so exciting but you have to look at it from the point of view of the cancer patient.  While on chemo I couldn't go to the dentist for a couple reasons, 1. with my lowered immune system any bacteria getting into my bloodstream is bad news, and 2. my mouth and gums were so sensitive that any dental work could have caused major pain and damage.
So, yes, going to the dentist is exciting.  It is another indicator that my life is returning to something resembling normal.

And the dentist was impressed.  He couldn't tell that I had been through chemo.  Apparently many chemo patients suffer from terrible dry month and it actually causes visible damage to the teeth somehow.  I guess all my concern about staying hydrated and drinking lots of soda water helped even more than I expected.

As for the boots, I think they are my favourite Fluevogs yet.  They are SOOOOO comfy and I have worn them so much.  I am almost sad that it is sunny and a little too warm for them right now........almost.  The sun is needed.

The last couple of weeks have been good and bad.  My jaunt to Victoria has put me back into the depths of chemo fatigue so I can actually go for a few days before realising that I have not left the apartment, not even to check the mail.  It is starting to improve now.  I am trying to get out almost every day for one activity.  Sometimes it is for 2 or 3 activities but that means I am definitely not getting off the couch the next day.  I am hoping the sunshine helps.

I have had some fun activities, I have had a couple of shopping trips and I did spend an afternoon in Whistler.
 I also had my 3 month post-surgery checkup so I can officially tick off the surgery box as complete.  I am still dealing with some mild lymphedema in my hand but my wonderful new massage therapist is helping with that and the pain and discomfort is gone while the swelling comes and goes.
Also, I had my 6 week post-radiation checkup.  Everything is good there.  My funny shaped tans are fading and I haven't come down a radiation cough yet.  The cough could still appear in the next few months but so far so good. Still, I think the radiation box can also be ticked off.
Now it is just the Herceptin, Tamoxifen, and Zoladex.  They continue to be fine with minimal side effects.  The only issue is the hot flashes and the occasional cold flash.  On the upside, I think my body is starting to adjust and the flashes are becoming less frequent.  I am getting 4 hours of uninterrupted sleep every night now. Yay!

All in all things are good and I have not started stressing about my next set of scans yet.  They won't be booked until some time in July at the earliest so now it is time to get into the fresh and enjoy June while it is still here:-)


Friday, 10 May 2013

New Dress and Shoes Required

My CT results are back......I am stable!!
(I thought about using a few more exclamation points but I am not a 13 year old girl so I thought that might be a little extreme.)

Such wonderful news. Now I can live in peace for a few months until I am scheduled for my next set of scans.

Now for the not so good news. After my wonderful visit to Toronto (I was thinking of you Karen, but I was totally Sebastian focused. Next time we will definitely get together!) I came home and was attacked by the fatigue monster. Requiring a few days of extra sleep was to be expected but I feel like I have gone back in time. I can no longer go out for walks on a daily basis without concern that I won't make it the last couple blocks. Not fun.

And, due to my favorite method of living....denial (I love Egypt. I can't wait for the day I can visit.) I am now dealing with some lymphedema in my hand. Apparently airplane travel is one of the best
ways to bring on lymphedema if you don't wear a compression sleeve to help with lymph drainage while in the air. If I had done some research before I got on the plane I may have been more proactive but really, I probably would not have been. I was suspicious that airplane travel may lead to lymphedema but I picked the denial route instead. Hopefully the massage therapist I have found will  be able to help me.

Needless to say my plan to go back to work has been put on hold for now. Back to building up my stamina and getting the lymphedema nipped in the bud.

Right now, I am in Victoria visiting my old stomping grounds. It's been a while so the excuse to come for a visit during a med lab conference seemed like a good one. And I get to be super fancy and stay at the Empress. Such fun. And hopefully I will not end up sleeping through half the sessions!

Thursday, 2 May 2013

Herceptin and Tamoxifen are my Friends

I don't want to count my chickens before they are hatched, but I have a feeling herceptin and tamoxifen are going to be my new best friends.
Tuesday was bone scan result day.  Due to some scheduling issue my oncology appointment was moved to right before my CT scan so I don't know the status of my liver yet.

For scan results there are basically three available options: regression, stable, and progression. And in the metastatic breast cancer world that I now inhabit there are a couple of fun phrases used when getting scan results.
Regression and stable are great news while progression is bad news meaning there are new mets or the current mets are bigger. Progression also means the current treatment is no longer working and it is time to move on to something else. I am hoping to not hit progression for a long time.

Now that I have covered the bad stuff, back to the good stuff, regression and stable. Regression is what I had in January when my PET scan showed only residual activity in the primary tumour and no activity in the metastatic areas. That is pretty extreme though. Really, any decrease in activity is classified as regression and it is usually the best news possible.
Stable is the other good news and it is what all us metastatic cancer patients aim for. If you're stable it means the current treatment is keeping the cancer in check even if it isn't shrinking. Regression is ideal but stable is still great.

Finally I have made it to the fun phrases. When the magic word regression is heard that means you have a date with Reggie. And when the good news is stable it means you get to dance with the stable boy. And it's even better when all your friends come out to the dance with you:-)

So, based on my bone scan results I am stable (!!) and if my CT results are the same it means there is some dancing in my future. I just have to wait until Monday to find out for sure if I should be buying a new dress and some shoes.  I am feeling pretty optimistic but one of the great joys of cancer is that just because the cancer is behaving in one area it does not always mean it is behaving in another area.

Ok. That covers the good news. Now the slightly less good news or maybe it is more the annoying news. My skin is still recovering from the radiation. A large portion of the pink has turned brown and is not an issue. There is one area on my sternum where, in the words of the onc, "wow, she (that being my radiation oncologist) really blasted the crap out of you there, didn't she!". That area has turned a beautiful lobster red colour and now I understand the itchy factor. I'm not supposed to scratch the area and I am being really good but every once in a while I just rub it a little bit and yowzers that is not worthwhile. The area is SO sensitive right now. Oh well, a 2 inch by 4 inch area that is uncomfortable is pretty insignificant. It should all be gone in another week.

In the meantime I am currently sitting on the 6th floor of the cancer agency getting my latest dose of herceptin. And this evening Ian and I are packing up the pets and heading to Pender for the start of ling cod season and to let Orchid get in a little mousing.

And if you are looking for any good sporting events this weekend, the Giro d'Italia starts on Saturday. Ryder Hesjedal from Victoria is the current champion so set the PVR and enjoy some bicycle racing.
There are also the trusty, or perhaps not so trusty, Canucks in the playoffs.  I really want them to beat San Jose but I gotta say that I am not about to hold my breath.