Friday 27 December 2013

It Was a Holly Jolly Christmas

Four days before Christmas Ian and I packed up the pets and headed for Victoria. My brother, sister-in-law, and nephew were already there and we got to have a fun family Christmas. Lucky for us the Steeves' Christmas was not like a Griswold Christmas and we weren't visited by a swat team.
For anyone who doesn't get the reference use the Google. I am not explaining my favourite movie :-P

We spent the next 6 days eating too much and probably drinking too much coffee. Funny thing about having cancer I no longer believe you can have too much coffee.

Ian and I got to spend time with some university friends visiting one of the old drinking holes. It was funny walking into the bar that had changed its name, looking around and feeling like I had never left town.

The biggest challenge of the whole trip was having to teach Jasper how to share a living space with an 11-month old. Jasper has never had an opportunity to spend much time with kids of any age so I call the experience a success since he had pretty much stopped barking at any sudden movements by day 4.  And by the time we were leaving Jasper was so exhausted from all the extra supervision he had to do that he wasn't twitching from any random screeches Sebastian made.
Orchid was fantastic with Sebastian and baby and cat seemed to enjoy each other.

We are back in Vancouver now and it is time to start thinking about 2014. I think my New Years resolution should be to do a better job of updating my blog. I have been such a slacker this fall.

In the cancer part of my life there isn't too much to report. I chickened out and never called my oncologist to get the official results of my bone scan. I decided to go the no news is good news route. Much less stressful.
And I am trying to get my CPP Disability sorted out further. When my claim was approved they decided to approve me affective July 30, 2012, the day I started chemo. That meant I was going to be paid a retroactive lump sum. The difficult thing is that all CPP payments aren't actually supposed to go to me they go to my LTD company. I emailed my case worker after I was approved, waited a couple weeks and never heard a thing. I phoned the office and talked to a very helpful woman. Turns out my case worker has changed. Glad to know keeping me in the loop is not on the priority list!
So now I have faxed in the appropriate paperwork, tried emailing my new case worker and I still haven't heard anything. So I am doing my best to not spend the money that feels like it is burning a hole in my pocket.

Merry Christmas and Happy New Year!

Tuesday 12 November 2013

I'm Such a Delinquent

Oh boy, I have been such a bad blogger.  I have been busy and lazy which is really a terrible combination.  But it goes well with my insomnia and fatigue.

Let's see, it is November, I just had my birthday :-) Funny thing about having cancer, you appreciate turning a year older every time it happens.  I haven't looked forward to my birthday so much since my 19th but I am getting ahead of myself.

Time for a little time travel........................and whoosh.............beep beep.........it is September again.  Remember September?  It was very nice here on the west coast, I think.  I actually don't remember that much about September.  The last week of September Ian and I packed up the pets and headed to Kelowna for some wine and hot tubbing.

Wait....I'm getting slightly ahead of myself.  In mid-September I HAD MY FIRST HAIRCUT!!!!!!
Yay!! Such a bizarre milestone I know, but it is the first time scissors have touched my hair since July of 2012.  It is hard to not get excited.
Okay, and back to Kelowna.  Ian and I helped our lovely friends Keetah (yes, also my hairdresser) and David do some house sitting for a few days.  It was positively lovely.  There are so many wineries around.  We would go out and try a new winery and bring home something pink and bubbly to sit in the hot tub.   Such a fabulous way to relax.

We found a really great deli in Vernon as well, although it turns out it now also in Kelowna.  The drive along the back road, which is now paved, between Kelowna and Vernon was beautiful.



And we saw a very nice barn.


We also brought home lots of wine.

A couple days after we got home it was Run for the Cure time.  The Red Devils did awesome!  We raised over $10,000!!!!  Thank you at all my team members for your hard work fundraising and baking.  Turned out there were bake sales at 3 different work sites for this year's team.  And a HUGE thank you to all of the donors.  Our team is pretty famous from last year at the Canadian Breast Cancer Foundation office for the amount of money we raised so it is so awesome that we could do it again this year. Thank you!! Thank you!! Thank you!!

The day was fantastic, we had such beautiful weather.
And here it is, my speech (Thank you Sarah for videoing):


And here is a partial team photo:


I had to be at the run site freakishly early to be interviewed so this the pic is mostly the early arrivers.  We actually had almost 30 people on the team.

After run day was over I had a week to recover before it was time to head off to Mexico.  Ian and I were flying to Guadalajara for a few days before heading to Guzman (here it is Heather in print so you don't forget the name) for my nephew's baptism.  I think our week in Mexico was possibly one of the best holidays I have ever had.

In Guadalajara we stayed at Hotel Morales in the Historical District.  It was positively stunning.  The building used to be a house where the visiting bull fighters would stay.  Eventually it was combined with a couple of neighbouring buildings and the hotel was created.  There were two different wings to the hotel and each wing had a central courtyard.  It was interesting because we didn't have a window in our room.  Turns out that not having a window is a great feature as the room was so quiet after the chaos of Guadalajara.

Ah ha! Found some pictures:




The top photo is the view from our hotel room door into the court yard.  Middle is further out and the bottom one is looking down on the courtyard fountain.  Such an awesome hotel!

We also visited a couple of tequileries one day which was fun.  After doing the Kelowna wine tours it was an interesting comparison.
Then on Wednesday it was off to Guzman.  I must say that mid-October is one of the best times to visit Guzman.  It is the time of their primary festival celebrating Senor San Jose that runs from the 13th to the 23rd.  There are lots of street food vendors (churros.......yum) and local artisans.  There are a couple of really neat dance groups and as the festival goes on it seems like more and more people join the groups so the dancers really start to take over.  There are fireworks every night sponsored by local families.  It is really unlike anything you would see in Canada and worth the visit just to experience the festival.

We also had the opportunity to see some small town and farming Mexico and even get up close and personal with a few cows before having a fantastic barbecue.


Saturday was the baptism.  The ceremony was at Rocio's old church, the same one where she and Craig were married.  I was delegated the role of user of Craig's camera.  I was definitely not a photographer......it is kinda scary holding a camera that is probably worth as much as my disability benefit is in a month.
Sebastian was super cute in his baptismal outfit and he was very good.  I think he may have had more patience during the ceremony than some of the adults present:-)

And there was a huge party after with the required bouncy castle.  Those castles are the best way to entertain a big group of children, it is quite amazing.
I did my best to not consume too much tequila and it was fun seeing so many of the people we had seen at the wedding 2 years ago.

Sunday we came home.  And then I was pretty much in a stupor for the next week.

Last week I saw my oncologist. Tomorrow I have a bone scan. Eek.  My birthday was Sunday so it was ribs and chicken and potato salad and beet slaw and baked beans.  And, of course, cake for dessert.  Yes, I did bake and decorate my own cake.  I wanted to practice all the skills I learned in my class.

And here is  the gratuitous meat shot:



No, I did not eat all that and yes, we do have a few leftovers still.

Oh, and one last thing.  I have now been approved for CPP Disability. That should make my LTD company happy.  I don't actually see any of the money it is just automatically sent to the insurance company.  The only perk I get is that from the perspective of the Canada Revenue Agency I am now classified as disabled so there is some sort of tex credit I now get or something.  I don't really know.  I am waiting for my information package to arrive now that my claim is approved.

Okay.  I think that is everything and we are now nicely up to date.

Fingers crossed for tomorrow's bone scan.


Tuesday 17 September 2013

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.


Thursday 5 September 2013

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.

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.

Friday 26 April 2013

Back to Reality

I have been delinquent, again, about posting.

It is now Friday.  Radiation finished last Thursday and it was uneventful.  It was a little sad to say good bye to my techs but at the same time I hope I don't have to visit them again for a very long time!

Last Friday I had a bone scan.  Oh goodie, time for a little scanxiety.
Gotta love cancer, it really has it's own language.  I have an MO and an RO and a BS but I was not allowed to have a PS.  I've gone through chemopause and grown Taxol fuzz and now it is scanxiety.

To help settle my nerves, on Saturday morning bright and early I hopped a plane to Toronto to meet my baby nephew.  And what a cutie he is! I think that I will have to fit in regular visits to watch him as he grows up.  Afterall, I have to help ensure he does not end up a Leafs fan.

I also made it to a Blue Jays game.......yes, I admit I am a fan, and I got sucked in by all the hype that finally a good team was being fielded again.  Not quite true, but they did beat the Yankees the day I was at the park.


I really wish I had remembered to bring my camera, my phone camera is getting worse by the day.  Ah well, you get the general idea.
Unfortunately we didn't get to catch a foul ball.

In all my visit to Toronto was a wonderful escape from reality and it was a little difficult getting back on the plane to return to my real life.

I have never had any real side effects from the radiation.  I got a few tiny blisters but they are in areas numb from surgery so I don't even notice them.  My skin was pink but it is starting to turn to a tan now.  There is a risk that as the skin changes the area will get itchy but I have not noticed anything so far.  Basically radiation has been a walk in the park.
It was a little mentally tiring at times as I had to be at the cancer agency every day and I always had to plan around my appointments but it was only 16 days.  Not something to actually complain about.

Scanxiety will rear its ugly head again next week.  I have a CT scan on Tuesday and I will get the results on Wednesday.  Fingers crossed the Herceptin and Tamoxifen are doing their things and everything will continue to be negative.

And I have reached out to my long term disability case manager to get the return to work process started.  I am still aiming for the beginning of June.  If that happens it will be so much easier to pretend that my life has returned to normal with just the every 3 week visits to the cancer agency for my Herceptin infusions and occasional check ins with my oncologist.

And lastly, Saturday Ian and I celebrate our wedding anniversary.  And as I can never say often enough, I don't know how I would be getting through this adventure if Ian wasn't helping me every step of the way.

Friday 12 April 2013

I Almost Lost My Arm Today

I have been a delinquent blogger yet again.  I have been busy going to radiation and walking around the seawall.  There really has not been much to report.

Radiation is Monday to Friday except holidays so there was a nice 4 day break at Easter since Easter Monday is a stat holiday in BC.  I am now at the three quarter mark and so far it has been very uneventful. Until today.  Today one of my radiation techs tried to cut off my arm.  She was horrified, I was glad it happened to me and not to some little old lady or another patient that is stressed out and not coping well.

I have discovered during my radiation treatments that I have been receiving a very customized program.  This for a few reasons:
1. I was born with this weird thing called pectus excavatum.  Basically this means that I had an indentation in my chest due to an abnormality in the growth of my sternum and some ribs.  I had a surgical repair done as a kid but I still ended up with a "funny shaped chest wall".  Yes, that is the exact medical description I was given recently. :P
2. I had a small piece of skin at my sternum that had cancer.
3. There were also metastases in my sternum so part of the goal of radiation was to hit those areas.

Normally radiation for breast cancer patients may only slightly touch on the sternum whereas my radiation oncologist wanted to blast away at my whole sternum.

My radiation involves both photon and electron treatment.  I believe that many patients do not receive the electron treatment.  It is the electron portion that includes a large adaptor that could cut off my arm and it was the cause of the radiation tech freak out today.

The part of the radiation machine that actually emits the radiation is pretty neat.  There is a glass plate that is about 1 foot square through which the radiation passes (in the picture the glass plate is not shown).  On the inside of the glass there are about 40 narrow metal fingers that stick out from either side.  The metal fingers, probably made of lead, since they block radiation, are lined up in a specific pattern so that radiation can only come through the glass in the desired way.
Here's a picture of the fingers before set up:


The machine is set up so that the fingers are in my required pattern and then a light is turned on and lights up on my skin exactly where the radiation will hit.  It is the upper portion on the treatment area that is traced out in ink and becomes my radiation artwork.  This artwork is used to help line up the electron adaptor to the treatment area.

During the set up there is also a ruler that is displayed with light on my skin.  The ruler measures my distance from the radiation source.
I also have 3 radiation tattoos.  Two tattoos are used in the very initial set up, I think to ensure that I am in exactly the same position I had been in during my initial CT plan development scan.  There are red lights emitted from the ceiling, one that crosses me vertically and the other crosses me horizontally, and they must hit the tattoos.  The tattoos are just single needle point pricks so not too big and noticeable.
The third tattoo is used in the electron set up, probably in a similar fashion.

The whole treatment takes about 10 minutes.

Today's little arm cutting off incident occurred after my treatment was complete.  The radiation machine looks sort of like this:


only it is an older version and is blue instead of white.
The electron adaptor attaches to the curved metal piece that is sticking out from the radiation emittor.  In the first picture showing the metal fingers the holder for attaching the electron adaptor is not attached.  The electron adaptor sticks out about a foot from the radiation source and sits very close to my chest and will sometimes actually touch my left arm close to my armpit.  Lucky for me I don't feel it as that area is still numb from surgery.
Anyway, while the electron treatment is happening I am essentially sandwiched between the adaptor and the bed so when treatment is complete I can't move until a tech comes in and lowers the bed enough that I can move my arm out from under the adaptor.

Today, the tech raised the bed instead.  Oops.  And then just to make sure she really freaked herself out she raised the bed a little bit more.  In all she probably only raised the bed about half an inch but she was totally horrified.
I understand that.  You really never intend to skewer a patient.
I, of course, thought it was hilarious and could not stop laughing.  It just felt like the perfect end to a pretty yucky, rainy Friday.

It is just one of those things that happen.  No big deal, I wasn't hurt, no bruising or anything.  I think it just a part of healthcare, everyone does the best job they can but everyone is still human and occasionally the wrong button gets pushed.
That is why for the really vital stuff there are always several different checks to minimize the human impact on the treatment and prevent errors.

Oh, and as for radiation side effects.  So far they have been minimal.  My skin is a little red and I may be slightly more fatigued, but I am currently walking about 50 K a week not including trips to the cancer agency or grocery store so probably not.  Apparently the fatigue is often partly due to dehydration caused by the radiation so I am trying to stay well hydrated.

So that is pretty much radiation in a nutshell.  Have an awesome weekend everyone!

Wednesday 27 March 2013

Does Sitting in the Sun Count Towards Radiation?

I sure wish it did!  It has been so sunny in Vancouver and I have spent lots of time enjoying it.  Especially since radiation was delayed.
I was scheduled to start radiation Friday afternoon.  At 0830 I got a call saying radiation had to be delayed until Tuesday because there was a problem with my plan so my radiation oncologist did not sign it off and changes were required.

Friday afternoon while sitting out in the sun after my Herceptin treatment I received another call from the radiation department.  Would it be possible for me to come in Monday morning for a clearance check?  They didn't want to cut my arm off.
Hmmmm, I didn't think I had signed up for losing my arm during treatment so Monday morning I trundled off to the radiation department for my clearance check.

Everyone was ecstatic............5 mm of clearance.

As long as I don't gain any weight I get to keep my arm.

And I gained some interesting body art on the radiation area to help with future setting up of the machine.

To interrupt all of this radiation fun.  My darling dog was sick, again.  It has been off and on for the last 2 - 3 weeks.  We finally decided it was time to take him to the vet and find out what was going on.  I went out for a walk while Ian took Jasper to the vet.  this is what I found when I got home:


Ah, yes.  The Cone of Shame.  Gotta love it.

Turns out my darling dog managed to pick up Giardia.  Probably from eating one of his favourite seawall snacks, goose poo or mussel shells.  Yippee.
The cone is required so that he does reinfect himself by licking his butt before his treatment is done.  Truly, a Cone of Shame.

So, once that  excitement was done it was over it was back to dealing with radiation.

Tuesday afternoon I met the same radiation techs I had the day before so we all sort of knew what was going on.  I got some more body art in green this time instead of black.  The whole process took about half an hour.
And for part of the treatment I have this jelly like sheet stuck to me.  The jelly is supposed to replicate skin so that the radiation is brought closer to the actual surface of my skin.

The radiation machine itself kind of reminds me of the bone scan machine.  There is a machine with a bed sticking out from it.  And there are these plate like things that also stick out and can rotate around the bed.
When the radiation happens I can hear a buzzing sound but I don't feel anything.

Afterwards the area felt a little warm, and by the end of the day I felt like I had spent the day in the sun.  I did go out for a walk, visit Costco, and do some grocery shopping so I did spend part of the day in  the sun but I felt a little more tired than that.

To protect my skin I am supposed to put on a water based lotion twice a day.  I picked up one of the recommended brands on my way home and slathered it on.  When I went to bed most of my body art had disappeared.  Oops.  I don't think my techs are going to be very happy with me today.
Actually, I'm not really happy with me either.  During radiation I have to lie without moving with my hands holding a couple of handles behind my head.  By the end of the day yesterday my left arm was totally numb.  With no body art, today will take at least as long as yesterday if not longer.

Oh well, I'm a radiation newbie.  Now I know to be more careful.  And maybe I should have read the information sheet more closely that said to be careful of the art work.  But I did test the lotion on the ink and it seemed to be okay.  But, I guess not.
Maybe that means I shouldn't follow the directions.  It is so confusing.

At least radiation has begun.  My completion day is April 18th and I can't wait.

Thursday 14 March 2013

Path Report

Now that chemo brain is gone it has been really difficult to stay inside and do nothing so I have been out and about lots and totally avoiding my computer.  As a result I am totally behind in the adventures in cancerland.

I did have a fun day in Whistler

And an uneventful trip up and down the Sea to Sky

(Wow, I really need to clean my phone camera lens.)

I saw my surgeon.........I think, a week ago?  Maybe longer.  No, it must have been a week, last Thursday the 8th.  How ever long ago that was.  What day is today?   Wednesday? No, Thursday, the Canuckleheads play today.  Thank goodness they finally won last game, I thought the band wagon was going to crash.

Anyway, I saw my surgeon last week, the 8th.  Great.  Now I'm getting so loopy I'm repeating myself, I really need to go back to work.  All of the pathology is back.  I have cancer.

Oh wait, we already knew that.

There were 23 lymph nodes removed (no wonder my armpit feels so funny!!!) and one node had isolated tumour cells.  That is as close to being negative for cancer cells as you can get without actually being negative.  My radiation oncologist classifies it as negative.  That is fine with me.

The most important thing regarding the tumour - all margins clear.  Yay!!
The only downside is that there was only a 1 mm margin at the chest wall and 2mm is preferred, but radiation will cover that.
All in all, my surgeon did an excellent job of hacking the cancer out of me.

With the pathology report now available, the next step was the radiation planning session.  That started with a meeting with a radiation resident who asked me if I knew the results of my pathology report and understood what it had said.  Then we covered the basics around what happens during the planning session and then he answered my questions.
My most important question was whether a person can have radiation multiple times at the same site.  This is a potential issue for metastatic cancer patients as radiation is used to control pain of bone metastases.
It turns out that one area can be irradiated more than once but it depends on how much radiation that area has already received and when it was done.  If a lot of radiation was given to a spot, a repeat could not be done within a year or two.  If, however, that spot needed to be done 5 years later, that would probably be okay.

So, now that you have all this new radiation knowledge plus the path results, I tell you that I will be getting 16 treatments, which is a pretty standard course of treatment, instead of the originally planned 10 treatments.  Can anyone guess what that means, remember at the same time about those other keys phrases, "due to my age" and "how well the tumour responded to treatment"?
Pretty much that means we are back to the "we're gonna try and cure you even though we can't really cure you" method of thinking.  The original plan of 10 treatments was apparently decided based on the thought that in the not to distant future the tumour would be involved in my chest wall and then I would have to be hammered with radiation to get it under control.  Now the path report combined with my PET scan makes me a perfect candidate for radiation and they are going to treat me like a plain old breast cancer patient with cure in mind rather than the metastatic patient I really am.
I think that falls in the good news category.

The remainder of the planning session involved getting a CT scan done, once breathing normally and once holding my breath.  I hold my breath for one scan so that my lungs are full of air (obviously) which causes my heart to be pushed down and thus further from the radiation.  Not all patients actually have to hold their breath during the radiation treatments but sometimes it is necessary to protect the heart. Fortunately each radiation zap would be for 30 seconds or less so the chances of me passing out are relatively slim.

My radiation oncologist reviews that scans and decides exactly how the radiation machine has to be angled to hit all of the required area with hitting things like my heart.  Once that plan is made I will get a call from the Cancer Agency telling me when radiation starts.
I hope that call comes soon.  I really want to get  on with the rest of my life.

Thursday 28 February 2013

The Cancer Alphabet

The things I do to entertain myself.

Here it is, The Cancer Alphabet!

A is for Adriamycin.            The red chemo drug.  It causes nausea and hair loss.

B is for Bone Scan.              I haven't been squished by a faulty Siemens sensor yet! This scan is used
                                             to monitor the status of bone metastases.

C is for Ciprofloxacin.         The first antibiotic I have ever been prescribed.  Figures I needed it for a
                                             chemo induced fever.

D is for Dexamethasone.      Yay. A steroid.  Used as a part of the anti-nausea regimen but still
                                              annoying. Causes Insomnia and ridiculous carbohydrate cravings.

E is for Emend.                     Oh anti-nauseant drug........you are my hero.

F is for Family and Friends.  Bet you thought I was going to say Fluevog:-)  This road has been so
                                              much easier to travel with all the support of my Family and Friends!

G is for Gemzar.                   A chemotherapy drug for down the road.  I hope it's a very long road, my
                                              hair is finally growing in.

H is for Herceptin.                May you work for a really long time.

H is for Healthcare.              Our healthcare system is pretty amazing.  It really makes this experience
                                             less stressful when I don't have to deal with an insurance company or
                                             worry about co-pays and deductibles.  It is stressful enough just hearing
                                             about my American friends.

H is for Home Care.            Thank you for not making me change my own bandages.  Yuck.

H is a very popular letter.  All 3 were so important that I couldn't pick just 1.

I is for Ian.                           You are my rock.

J is for John.                        Fluevog of course.  Did you really think I would not mention shoes?

K is for Kleenex.                 Especially the ones with lotion.

L is for Lymphedema.         Really hope I don't get it.

M is for Mastectomy.          It actually was easier to handle than chemo.

N is for Nose hairs.             For such a small body part who knew they were so important!

O is for Optimism.              Not really any point of getting out of bed every day if you don't have
                                            optimism, and a little bit of hope......H is already kinda a full though.

P is for Pancakes.                Yum!

Q is for Quinoa.                   I just threw that in to make me sound healthy.  I really couldn't think up  
                                             anything good for Q.

R is for Rum.                       Needed for mojitos.  I wish it was summer.  Then my mint would be
                                            growing and I could make one.  I could have also selected radiation, but
                                            right now I'd rather have a mojito.

S is for Sebastian.                Hi little nephew, I can't wait to meet you!

T is for TDM-1.                  Newly approved by the FDA.  Also works against the Her-2 gene.
                                            Another down the road drug.  Will also probably cause hair loss:-(

U is for Umbrella.                I definitely need one today.  We are having a pineapple express only it is  
                                             coming from Japan instead of Hawaii........I guess that makes it a sushi
                                             express.

V is for Vinorelbine.           Also known as Navelbine but that wouldn't be helpful for my alphabet.
                                            This is yet another chemo drug.

W is for Walking.               Thank goodness my feet have recovered.  Walking is the only real exercise
                                            I can do these days other than shoulder stretches.  And the shoulder
                                            stretches are getting boring!

X is for Xoleda.                  Here we go again, another future chemo drug.  On the upside it doesn't
                                            always cause hair loss AND it comes in pill form.

Y is for Yoga.                     I am thinking of taking this up once I can move my are more.  It should be
                                            fun, the breathing techniques are practically the opposite of Pilates.  That
                                            should help keep me on my toes.

Z is for Zoladex.                  A drug to prevent estrogen production.  But the real highlight is the 15
                                            gauge needle used to inject the time release pellet under the skin.

Monday 18 February 2013

My Pill Bottle Pyramid

Recovery is getting more boring.  I can't walk Jasper, I can't lift anything over 10 pounds........actually I can't really lift anything since it feels like I will rip myself open, I can't do yoga or pilates, so instead I built a pyramid:


How exciting.

The pyramid includes everything I took to make it through chemo.  I am missing a few things.  The Emend card at the back was only for one round of chemo.  I had 4 sets of those cards but I threw the others out, I had not thought of taking this picture for posterity when I first started chemo.

I have one unused prescription for a wig.  I have another unfilled prescription for a pain killer but that was for surgery not chemo so I am not including that.

Yea, so, I am kinda bored.  And I have been discharged by my home care nurse so I don't even have her visits to look forward to.  Oh well, at least not seeing her means I am healing nicely.

If you need some entertainment here is a YouTube link (thanks Grace!) http://www.youtube.com/watch?v=iJ4T9CQA0UM

I see my oncologist in another week.  And my surgeon.  By then someone should have some pathology reports for me.  I am waiting to hear how many lymph nodes still had tumour cells.  I am hoping for zero.

And at some point I have to see my radiation oncologist to get everything sorted to begin radiation.  Likely that won't be for a couple more weeks.  I have more healing to do first.

And now, the rain has stopped so I shall go do one of the fews things I can do, walk.

Have a lovely Monday;-)



Friday 15 February 2013

Recovery is Getting Bor-ring

Thank you to everyone who has gone for a walk or coffee with me during the past week!
Without you I think I would be ripping out what little hair that I have while attempting to not go bonkers while recovering.

I still have the annoying drain so all the exercise I can do is neck stretches and walking.  I know, up until now all I could do was walk so really there should be no problem, but I am SO ready to start expanding my exercise program.
It is possible that in 5 more weeks I can back to Pilates and soon after that I can start going to the gym. And then I will  feel as though I can finally start gearing myself up to get back to work.  It is about time!!!

My hair continues to grow......I might even have to break down and use shampoo for the first time since  July some time in the next few weeks.  That would be so exciting.

Right, the whole recovering from surgery thing.  I stopped taking the Tylenol a couple of days ago.  I woke up one night and realized I had forgotten to take my last dose so instead of getting up and taking it I just stopped taking it.  That seemed a lot easier.
And I still have the stupid drain.  I might get it taken out today.  Otherwise it will definitely go either Saturday or Sunday.  Yay!  Then I won't live in constant fear that I will snag it on something and rip it out.  Ugh.  What a nasty thought.

The flexibility of my arm doesn't seem too bad at this point.  Any limitations in my movement are driven more by the drain than anything else.

Ok, all the above stuff was written at 1 in the morning while I could sleep because of the drain. I am happy to report that the drain came out this morning!!!
It feels like a 50 pound weight has been lifted off my chest. I have to spend the weekend acting like I still have the drain so I don't go overboard and cause any damage but on Monday I can start doing real stretches.

Have a lovely weekend:-)

Friday 8 February 2013

Post Surgery, at Home and Recovering

I think my surgeon is a superstar.  So far I have taken a total of 12 regular strength Tylenol to control my "pain".
The biggest pain is in my right wrist where the IV tip rubbed against the vein.

Wednesday was surgery day.  I was at MSJ at 0630 to check in.  I met with a surgical day care nurse to go over my medical history and then I got into one of the fabulous surgery gowns with snaps everywhere so they are easy to put on and take off.  Then I met with one of my OR nurses, then I met with a doctor who was assisting with the surgery, then I met my anaesthesiologist, then I met with my surgeon, then I met my other OR nurse.....I didn't actually have to meet the second nurse but she had heard that I was a lab tech and wanted to meet me.

Just after 0830 I was sent off to the OR.  I had a short discussion with my anaethesiologist about the best place for my IV.  Sometimes the vein in my right hand collapses if I am dehydrated but the vein was apparently too big and juicy to resist.  Fortunately the attempt was successful......having to dig around in the vein never seems like a good way to start the day.

And then it was about 1210 and I was in recovery.  I got a shot of gravol for nausea and I was transferred up to 4 West a little before 1400.  Lucky me I got a semi-private room and my roommate didn't show up for another hour or so.

My nurse was great and I had a visit with the Clinical Nurse Leader that I had dealt with quite a bit during my Point of Care days.  It is always fun to hear a little bit about how things are going on the wards that I used to know so much about.

I actually managed to get some sleep Wednesday night in-between visits from my night nurse.

Thursday morning I had the same nurse that had been there the day before.  I had a visit with the physiotherapist about the exercises to be done during my recovery.  I also met with the liaison for home care as a nurse will come out periodically to check my dressing and drain.

Last I had a student nurse come in and check on me.  When she came in she told me that she was excited to meet as she had heard that I had been a lab tech and I was really popular with all the other nurses (the other 2 that I had seen on the ward isn't really all the nurses, but it was nice to hear anyway!).
I offered to let her practice her glucose meter skills on me but she wasn't sure she could do that since I was diabetic.
I did have her check my drain and empty it.  And I had her show Ian how to empty the drain as well.

And then it was time to go home.

It is now Friday.  I am still puffy from the saline but it is getting better.  I am sure my chemo nurse will be thrilled to have to put in an IV this afternoon for my Herceptin.

I had a visit from my home care nurse and everything looks good apparently.  I am a wuss so I won't look at the surgery site.  And there is no swelling so I can really feel the drain and it is kind of gross and uncomfortable feeling but still no pain.
Hopefully the drain can come out on Tuesday.

Tuesday 5 February 2013

Ahhhh.......Sushi

Yay!  Thanks to the St. Paul's gang for accompanying me to my first sushi meal since last July.
I don't normally take pictures of my food but this is something I had to commemorate.

Volcano Roll!!!!!!


And tomorrow is surgery.  I'm not exactly thrilled, but I am having the surgery because I had good results.  That is so much better than not having surgery because I had bad results!
I will be in only overnight so home on Thursday.  It seems a little hard to believe that the stay is so short, but the shorter the stay the lower the risk of catching something else so I suppose that is a positive.

There are a few good things from the past week:

I became an aunt for the first time on Saturday, January 26th.  Now I need to recover quickly to make it out to Toronto for a visit.

Next, my chemo brain is almost gone!!  This is wonderful.
The only downside is that after being home for 2 days without chemo brain I had such a bad case of cabin fever I was tempted to teach myself to juggle knives.  I can only hope I get cleared to go back to work soon.  I am aiming for July but I am dreaming about May.

Lastly........my hair has started to grow back!!!! And my eye lashes!!!!! I'm not 100% about my nose hairs since I can't see them, but I don't think I'm blowing my nose quite so often.
Hopefully soon my cancer patient look will start to disappear and then I can wear hats because I want to and not because my head is cold.

I will be out of commission for a few days due to surgery.  Ian will send out a text from my phone after he sees me post-surgery tomorrow but there likely will not be any action on my blog for a few days.

Thursday 24 January 2013

Surgery Consult

Sorry, I totally forgot to post the results of the visit to my surgeon on Tuesday.  I guess it was the chemo brain acting up again.

Going into the appointment the one thing I knew for sure was that I did not want to have any lymph nodes removed.  The primary tumour is on the left side and I am dominantly left handed and I am a klutz so I figure I am pretty much the potential poster child for lymphedema.  And then my surgeon said "due to your age and how well you responded to treatment......we should definitely remove all the lymph nodes".
Of course she said that.  I had made a plan so now it is being changed.  What a surprise:P  

The general opinion appears to be that even though technically I am not curable, due to my age and how well I responded to treatment, everyone is just pretending I am curable and treating me in the most aggressive manner possible.
Can't really disagree with that idea.

So......on February 6th I get to trot off to Mount Saint Joes and have my left breast lopped off and all the lymph nodes removed.  Sounds like a fabulous way to spend a few hours, doesn't it?
I get to stay overnight in the hospital though.  Yes, you heard me correctly, one whole night.
Then Ian gets to take 2 weeks off work to look after me since I will have limited use of my left arm and I will be kicked out of the hospital before I have even started to heal.
At least Ian has lots of vacation time left.  I can't imagine what people do if they either don't have a spouse or their spouse can't take time off.

Oh, and on Wednesday I had another bone scan as a baseline for following my progress now that chemo is done for now.
And the Siemens sensors behaved very well so I did not squashed;-)

Tomorrow it is CT scan day to finish up my baseline testing.

Monday 21 January 2013

Next Treatment Step.......New Shoes

I swear, Ian encourages me to buy them.  It's not my fault.

Here they are:

The highlight of my shopping trip was when I was called a True Fluevogger!!!!! And by someone working at the store too.
There is a pair of boots in the same family I would love to buy as well......maybe after the next step is adventure.

And the lobster dinner last week was fabulous!  It is my favourite meal.

Tomorrow it is off to see the wizard, or at least my surgeon.

Wednesday 16 January 2013

My PET Scan Results

I had a PET scan yesterday.  It was really short notice so I don't know if many people had heard about it.

I had my oncologist appointment today.  Going into the appointment I had the next few months of my life all mapped out.  I had decided that I am done with chemo for now.  I am ready to have my hair back (especially those nose hairs) and to have an end to most of those pesky side effects.
I had also decided no surgery for now.  I can tell that my brain is slowly starting to emerge from the chemo fog and I am so ready to go back to work.  I will have radiation.  That would help control any primary tumour left and zap any cells left in my lymph nodes or in the patch of skin.

At the oncology appointment the results of my PET scan were the first order of business.  The official word is ALL bone and liver mets that lit up on the original scan are no longer visible!!!!!!!!
There is only residual activity remaining in the primary tumour.
So........next step..........surgery.  There go my plans.

But, who cares?????  That is pretty much the best news I could possibly get.  As a stage IV patient I have been ingrained by others who have gone before me that the primary goal is for the mets to be stable.  As long as things don't get bigger, you are good.  To have all the mets melted away, that is absolutely fantastic!!

And to top it off I get to have a lobster dinner to celebrate.

Next up will be the meeting with the surgeon on Tuesday morning.

I had been expecting a certain level of good news with the PET scan results but this is just so fabulous I almost can't believe it.
Thanks to everyone for all the thoughts and prayers and company while I have travelled this first step of my journey.  I couldn't have got to this point without you:-)

Thursday 10 January 2013

Top 10 Most Annoying Side Effects

There is nothing new going on in my life right now, but I have heard that people start asking about me if I don't post regularly so here I am:)

I am hopefully done with chemo now and that has led me to think about all the wonderful side effects I have lived with over the last 6 months.  Now, to channel my inner David Letterman here is my top 10 list of the most annoying side effects.
I will start with the least annoying and work my way to most annoying.

#10.  Losing my eye brows and eye lashes.  It makes me look like a cancer patient.  Bleh.

#9.  Slowed skin and nail regeneration.  This could actually be several bullets but then I would be way over 10 items and each of the reasons behind this item are equally annoying.  The basic annoyances with this are the increased sensitivity of my hands and feet as my calluses have disappeared.  This has made walking painful at times and I have to be more careful of my hands when cooking or doing anything.  I never leave home without wearing gloves these days.  And any nicks or cuts or banged up toe nails (I currently have several) take way longer to heal.  

#8.  No alcohol.

#7.  Immune deficiency.  I can't eat sushi, eggs benny or anything not fully cooked.  At least I
 can still eat pancakes.

#6.  Hot flashes.  Very uncomfortable and definitely interfere with my sleep, which leads me to.....

#5.  Insomnia.  What can I say, I am the sort who needs 8 hours a night.  At least right now I can spend 10-12 hours per day in bed so my total number of hours of sleep isn't too bad.

#4.  Being bald.  I love my hair.  I want my hair back.

#3.  Chemo brain.  The second major reason why I can't work.  Besides, I dislike feeling so stupid all the time and having absolutely no memory.

#2. Fatigue.  The primary reason why I can't work. Nuff said.

And the #1 most annoying chemo side effect I have dealt with is...........(take a guess, I'm sure some of you will get it, I have complained about it enough!)

Saturday 5 January 2013

The Breast Conference

Friday was a good day.

I had a very interesting glimpse into the healthcare system in Canada or at least British Columbia.   I have been receiving all of my treatments at the BC Cancer Agency.  Both my oncologist and radiologist are based out of there as well.
On Fridays, once or twice a month, maybe more frequently, the BCCA holds the Breast Conference.  It is a gathering of the oncologists and surgeons, sometimes radiologists from BCCA, and surgeons and docs from the Rapid Access Breast Clinic may also attend, to discuss specific cases and brainstorm.  My surgeon from the RABC thought that my case should be discussed and Friday was the day.

I went up to the BCCA and was put into one of the exam rooms.  After a couple of minutes the onc that chairs the meeting came in and introduced himself and told me that after my case was discussed some surgeons, maybe some oncs, some residents, and students will come in to examine me and ask me some questions.
I waited about another 15 minutes and three people, 2 surgeons and another woman, came in.  The 2 surgeons examined me and asked me some questions.  The basic crux of the discussion was that after having seen my file they felt that I was responding extremely well to treatment so it looked like there were a lot of possible options for the next step in my treatment.
One surgeon asked if I was doing 6 rounds of Taxol.  When I said no, only 4, and I had just had my 4th, he suggested that perhaps I should consider having 6.

For a bit of background on the idea of 6, I had actually thought about that about a week ago, cringed, and stuffed that thought in a box and buried it deep in the files of my brain.  I am so ready to be done with chemo.
With round 3 of Taxol I did not feel I had as much response as with the first 2 rounds.  This is similar to what happened with the first set of drugs.  Each round it felt as though the tumour response was decreasing.  When I had round 4 of Taxol, however, the response was almost immediate.  Within hours of receiving the drugs I could feel tumour response.  Maybe round 3 was a blip and I should have more Taxol.
Ugggh.  I don't want more chemo yet.  Into the box you go!

So, when the surgeon asked about 6 rounds I did say I had thought about it but I was not sure.  I was really ready to take a break and recover from chemo.  He said he could understand that feeling and again he and the other surgeon said that there were lots of options available.
The three people left and I waited some more.

After another half hour or so my surgeon from the RABC came in.  She had heard how much response I had had since she last saw me and wanted to examine me herself.  She was very impressed and we discussed a bit more about my options.  Because of the response I have had she feels we don't have to rush into any decision.  We will stick with our original plan of waiting to see what the scans show.  Also, it is possible to delay surgery for now and just have radiation.  Then, should there been any recurrence at the primary site we have the option of surgery later.
For now we will wait for the scans.

After another about 45 minutes my oncologist came in.  She apologized for the long wait and that my case had been put up first and it ended up taking up a large portion of the meeting time and they did have other cases they needed to cover so things ended up running long.  I don't mind waiting if all the local cancer brains are debating the best course of action for my care!
My onc had not seen my since before Christmas and I told her there had definitely been tumour response since then so then she examined me.  Just in case your keeping track that is 4 people groping me in an hour and a half - the joy of the cancer patient, you must have no shame;)

After the exam she said that during the meeting people had lots of ideas so she is now more confused than ever but she is definitely booking me for a PET scan.
At least something was decided!
By having all three of the bone/CT/PET scans done we can do a thorough comparison of the before and after and have a really complete picture of exactly what is currently going on.

Regarding surgery, the general consensus was that surgery would not prolong my life span so at this point in time it is not truly necessary.  Although one person did suggest that the planned radiation would be easier to do if I had surgery first.  So, the surgery decision will continue to be delayed until after the scans come back.
Regarding the 6 rounds of Taxol, my onc said that right from day one she had really intended my to only do a total of 8 rounds.  Her thinking is that by only doing 4 Taxol now we can save it for when the cancer starts getting active again.  We already know the tumour responds to it, and the side effects are not too horrendous so we can pull it back out in the future and do another 4 rounds with it before having to start moving onto a new drug.
If I had 6 rounds now that would remove Taxol from the arsenal and we would have to start with something totally different when the cancer starts activating. The reason for the usual limit of 6 is the high rate of nerve damage to the hands and feet.

My onc is hoping to push through the PET scan so we have the results before my next treatment to help us make a decision about whether more Taxol would be helpful.  If the mets to my bones and liver are mostly gone then more Taxol would really be overkill, I think, and we can move right on to the radiation and focus on the primary tumour.

So, yes, Friday was a great day.
The only decision made was that I will have a PET scan, but any time a cancer patient is told that they are responding so well to treatment that there are endless further treatment options and there is no need to make any snap decisions, that is utterly fantastic!!!

And a certainly feel like I am getting world class care.