I'm Feeling Less Wise

Today has been eventful and I feel as though I have lost some wisdom.  Can you lose wisdom?  Probably not, but you can lose wisdom teeth and I lost my 2 remaining ones.  See.......

Having cancer is interesting, it makes you do weird things.

A little background: I have a couple of boxes of a drug called Clodronate in my bathroom cabinet.  This drug is for patients with bone mets like me.  When you have bone mets there tends to be more rapid breakdown of the bone where the metastases are and this can lead to really fun stuff like having vertebrae fused or needing rods inserted into your femurs.  The drug is supposed to slow down the breakdown of the bone thus delaying the really nasty problems.

One of the awesome side effects of Clodronate is necrosis of the jaw.  For you non-science types that basically means the jaw bone dies and you end up with mush.  Not something I am aiming for.  And the possibility of this great side effect is most likely when you have dental procedures done that affect the bone.

Ah ha! Dental work, that leads nicely back to wisdom teeth.

I had my bottom wisdom teeth pulled almost 20 years ago because they were bothering me a lot.  I kept the top ones for vanity as I had a space between my top front teeth and I wanted my teeth as crowded as possible on the top to help keep the space as small as possible.
Eventually my top left wisdom tooth became supra-impacted.  It didn't bother me but several dentists told me I should get it out as at some point I could be a problem.  I was considering getting both wisdoms pulled this summer but I always found something better to do so I never scheduled the appointment.

When I saw my oncologist in July she told me that it was time to start me on Clodronate.  Up to that point we had not actually discussed my going on a bone drug but I knew it would happen at some point.  I immediately piped up with "I can't do that yet, I have to get my wisdom teeth pulled."  I have heard some stories of nasty side effects with bone drugs so I wanted to delay as long as possible starting the Clodronate.  But, as I already said, I didn't get the teeth pulled so I started the drug.

When I saw my oncologist in September she asked if I was ever going to get the teeth pulled and I said I had no plans to do it any time in the near future.
One problem, the jaw necrosis thing with Clodronate is cumulative so, the longer I am on it the more likely I will have a problem after something invasive so.........we decided I would see a dentist at the Cancer Agency and he would make the final decision as to what to do with the teeth.  He understands the full consequences on Clodronate and would understand that in a few years even if the teeth were problems I would be at risk to have something done about it.

Today was the day of the dentist visit.  The dentist looked at x-rays and looked in my mouth and said "yes, those teeth should come out.  I can do it right now."
Um, ok, so I said "I have a cake decorating class tonight at 6:30, will I still be able to go?"
The answer was yes, so then it was, okay, pull them out.  But first I have to text my friend because we are supposed to be meeting for coffee and I want to let her know about the short delay.

Yup, so after a 50 minute dentist appointment I was down 2 wisdom teeth.  Well, not really down them, I brought them home to take a picture of them.  I thought everyone would really appreciate the visual:-)
I guess I could have taken a picture while at the dentist office but I think I may have slightly been in shock so I didn't think of it.

The freezing is almost gone now so I can feel my tongue again.  I've popped a couple of Advil, but other than that I feel pretty much normal.  Now I must go colour some icing in preparation for class tonight.

Relief

Yesterday, Wednesday, was the big day.  I received my CT and bone scan results.  And now the stress is over I continue to be stable! Whew.

In fact, on the bone scan there was even a decrease in the amount my sternum lights up.  (On a bone scan a radioactive tracer is injected into the bloodstream and during the scan cancerous areas or other areas undergoing rapid bone metabolism, such as sites of damage or previous surgery, light up.  The brighter it lights up the worse it is.)
I had surgery on my sternum as a kid so it has not been known if some of the brightness is from the original surgery or if it was all from cancerous activity.  I guess since the light has dimmed slightly it means there had still been active cancer cells but the Herceptin and Tamoxifen are keeping it under control.

Yay!!!  Now I can relax for another 3 months until I am due for my next set of scans.

In the mean time don't forget about the Run for the Cure on October 6th.
There is a fundraising event on September 26th at Ceili's at Granville and Smithe in Vancouver.  Tickets are $10 and that gets you a drink.  Please invite anyone I may have missed on my Facebook sweep.
100% of the money from ticket sales goes to the Red Devils.

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:-)

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!!!

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.

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!

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:-)