My first cold in six months......

Well I made it 6 months without getting any kind of cold or flu bug!  I definitely have one now, sniffles, cough, sore throat....you know the works!  I guess I did really well getting through all my early treatment fairly unscathed from an outside infection.  I'm onto the Advil Plus cold & sinus remedy so I can get through this week. I think that's where my headaches came from last week, it was the brewing of this virus that I have.
I am starting my third week (11/20) of radiation today and hopefully it doesn't knock the life outta me having this cold.   I'm taking my cousin Jennifer with me today so she can see what the radiation treatment looks like.  The people at the radiation clinic are so nice they always encourage you to include your family and friends.  It makes it a whole lot nicer for me to share what I'm going through.
The weekend was pretty good, we didn't really get up to too much, I wasn't feeling great so I had little motivation to do anything. I did go for a girls night on Saturday with Monique to dinner at My-Chosen café and then we watched a couple of movies at her house.  She spent the entire duration of one movie giving me a head and neck massage.  It was so relaxing. 
The girls swim tournaments went well Saturday and Sunday.  I ended up sending Phil to be the tournament photographer on Sunday because I was so sick on Sunday morning that I couldn't get out of bed. :-(  I was really looking forward to that. Next time I guess.
The weather was pretty crappy so no gardening got done, Phil did cut the lawn, that always makes everything look so nice.  We are getting ready to plant some baskets and planters as soon as it warms up a wee bit.  I really want to do a small veggie garden this year, Phil is not really on board with it cause he will have to construct some sort of area for that to happen!  I always have a long list of things for Phil too do.  It is more like a wish list which is really starting to get longer and longer.  I even have a board on my Pinterest site called Phil's to do list! I also have another one called gardening 101 if you are interested in really cool ideas for your garden.
Other than that, it's Monday again and we are back to the routine.  I hope you all have a great week! I'll write again soon.
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Radiation 1/2 way done!!!!!

I often find myself wondering what to write about.  I have lots to say, just not sure if it comes across as preaching or just telling my side. 
I am not a religious person by any means, I can honestly say I do feel blessed for the support and love that I have received over these last 6 months of this journey.  I still have a long road ahead of me and for me I can't celebrate until that final Herceptin treatment happens......trust me that will be a celebration! 
I still can't believe how popular this blog has been and how much people are enjoying reading it, and all the great stories I have heard about people sharing it with others who they thought would like it.  Maybe I'll write a book one day!

Written Wednesday April 17, 2013:
So here's an update, I am headed to day 8/20 of radiation.  It is going well, it is more of a pain to get there everyday and find a parking spot than any side effect of the treatment.  My boob is really starting to get sore and look quite sunburned, last Friday Dr. Sally Smith saw me and has decided she is going to keep an eye on it for the duration of the treatment so she will see me every week.  It has not progressed into anything ugly yet, apparently it can start to blister and be extremely painful.  I hope it does not go that route with me!
My day to day life is normal, yesterday was Georgia's birthday, so we had a family celebration.  She chose to have Indian food for dinner, so I made butter chicken and Tikka Masala and went and picked up Naan bread to go with it.  It was delicious.  I made a batch of red velvet cupcakes and a chocolate cake to serve for tea and cake with the family.  She was spoiled of course and had a pretty wonderful day.  It's hard to watch them grow up so fast.  Age 0-8 takes forever then it just goes so fast from there.
Written today, Friday April 19, 2013:
I'm half way done radiation. Today I completed day 10/20 rounds.  I also saw Dr. Smith (Radiation Oncologist)  today and she had a look at my sore booby.  It is slowly getting more sunburned and is quite sore.  I cream it regularly and take good care of the skin there is not much more I can do.  The worst is my nipple feels like I started breastfeeding again!! OMG if you know that feeling of sore cracked aching nipples that's what radiation feels like on your nipple!  I also started getting some pretty wicked headaches this week, they started on Monday after radiation and have not stopped.  Wednesday was particularly bad and carried right through until Thursday.  Dr. Smith does not have a physiological explanation as headaches are not a side effect of radiation at all, she is going to keep an eye on things.  I hate headaches so much!
We have a busy weekend planned with 2 of our girls swimming in tournaments this weekend and lots of yard work to do as well.  I'm taking the official tournament photos on Sunday for the first time so it should be fun.
I'm on the countdown now as the gal at radiation said to me today!  10,9,8,7.......Oh I can't wait until it's done. 
Hopefully my energy level doesn't decrease too much in the next couple of weeks, I have been getting out and walking regularly and doing some little workouts at home too. 
My next big adventure is losing all this complimentary chemo weight!
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Radiation day 4.....

I went for my fourth round of radiation today. All is going fine, other than a tender boob it is so much better than throwing up! I have to do some regimented skin care to avoid a nasty kind of sun burn reaction that people get with radiation.  I just have to use a water based cream 2-3 times a day.
I have to go the cancer agency every day Monday to Friday for the next 20 days.  I am relieved that Dr. Smith was able to reduce my radiation treatment period, as almost 7 weeks of going there every day was going to be a bit much! I'll take a month, that'll do.  There are 4 radiation machines that run everyday.  They are all named after trees, I am on the Birch machine.  Today my Auntie came in with me to get set-up on the machine.  She could watch them getting me lined up with the red alignment beams and then they showed her all about the actual radiation that they were doing while I was in the machine.  The techs were all very nice and spent the time explaining to her what they were doing and what the images were that she was looking at.  My actual radiation only takes 4mins the time to get me set-up and changed and unchanged takes longer than that!

All in all it is going fine. I hit a wall of fatigue everyday around 15:30 and it passes after about an hour or so. 

I'm looking forward to the weekend and not driving over to the jubilee!

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Radiation started......

Yesterday April 8, 2013, I had my first round of radiation.  It took just over 30mins, and was completely pain free.
It was an interesting procedure and very high tech at that!  I had to change into a gown from the waste up.  They walked me into the room and got me all situated on my back.  Then came the really high tech part....getting me aligned under the beams.  It is so funny that here I lay surrounded by millions of dollars worth of equipment and the easiest way to get me exactly lined up was to tug me around on the sheet I was laying on so the could position me just so!  We had a good laugh!  The procedure itself was less than 5 minutes and the reaction I should expect are fatigue, and redness (kind of like a sunburn.)  I'm off to another appointment now......everyday for 20 rounds.

The control centre outside the radiation room

The radiation machine.  My arm lays in the blue towels above
my head.

The control board - they can talk to you from outside the room

T

One of the laser beams, this sat right above my face. Those are not
the radiation beams. They are the alignment beams.
 

The Party......

On Thursday Herceptin chemo went off without a hitch! I went into the BCCA they ran the drug over 30min and then I was outta there!  Off the Thrifty's to buy dinner......it was a Monique night!
I woke up Friday with no symptoms and am carrying on as usual....ie. making lunches, taking out the garbage & compost, put on a load of laundry, cleaning up cat poop in our family room.....you know the usual.
I thought I would write an extension of my last post talking about telling my kids that I had cancer.  I don't think there is really a way I can write about how that all went down, there is so much more that I could say.  There is another part to our family battle that I thought was important to share with you.
To set the stage, from the beginning of my diagnoses I was told that my lump was "tiny" and that was really "good."  This came mostly from my medical team and then the odd person who would ask and try to give a piece of encouragement and reassurance.  My surgeon (Dr. Ross), had walked me through the probable and most likely course of treatment for my "type" of case.  That proposed plan had been reiterated to me throughout the months of October and November through surgery and recovery (which I might add was very painful and lasted 4 weeks.)
The plan was simply laid out, I would have surgery, then radiation for approximately a month (20 rounds.) The treatment would start no sooner than 6 weeks after surgery.  I would have to go to the BCCA to see an oncologist to discuss the radiation treatment. 
My BCCA appointment was for December 5, 2013.  The day that further changed my life forever. 
This appointment was with a radiation oncologist, who is the doctor that will treat and follow you through radiation.  Dr. Sally Smith was her name and she sat before my auntie, Phil and myself and delivered the news that I should undergo radiation for approx. 28 rounds in her opinion, however she would not begin treatment now because I needed to have chemotherapy because the kind of cancer I had (HER2 +) was so aggressive and harmful particularly because I was a very young cancer patient that I should undergo chemotherapy. 
My heart sank and we were all in complete shock.
Chemotherapy was my worst fear, I did not want to be sick. I didn't want my kids to see me sick.  I am one of those people that just does not hold up well when it comes to changes in my body.  My pregnancies were not great due to nausea and vomiting so I didn't have a good outlook on what chemo would do to me.
We saw a my medical oncologist for the first time 5 days after I saw the radiation oncologist. That was when the plan was unrolled.  I spent the next 7 days talking to people I could get opinions from and maybe get someone to say I shouldn't do chemotherapy.  No one would say that!  I agonized over the decision, you see the information you are given to make a choice is all statistics.  Dr. Bernstein also gave me a hypothetical analogy which was a tool in my decision. The survivorship analogy:

The PARTY

In ten years we are going to have a party. 

We will invite 100 women that are exactly your age, with exactly your tumour size, shape, exactly like you.  

75 of those women will come to the party just having surgery to remove the tumour.

83 of those women will come to the party if they have surgery and then radiation.

91 of those women will come to the party if they have surgery, chemotherapy and radiation.

9 women are not coming to the party. 

Those nine women have recurrence, metastasis or death. 

In the end I ended up making my decision. I turned down the course of treatment that was originally proposed by Dr. Bernstein.  She had said she wanted me to undergo 15 months of treatment.  I knew in my heart of hearts that would break me.  I told her over a phone conversation, and she accepted my decision with no judgement.  She then ninja kicked me with another treatment course she wanted to try with me, I was so stunned, I had no idea there were other "options."  I was exhausted emotionally and mentally.  There are so many things to consider.  The new proposed plan was the one I have been following, 4 rounds of intense chemo, 1 year of Herceptin chemo, and radiation. So here I was back to the agony of making a decision.
The next couple of weeks I spent trying to figure out a way to NOT do this.  I wanted something to show me that it was not necessary.    I had to tell her my decision on December 24, 2012.  OMG!! This was unbelievable.
In the end after 2 weeks of battling in my mind and going over and over it with Phil and my Auntie, it was one morning that I was lying in bed when I made my final decision.
There I lay waking up for the day, and the two little kids, Stella and Vinnie, came into bed with me before they got ready for school. It was just the right time to talk to them.  All snuggled together, I began to tell them about what the doctors wanted me to do to make sure that this cancer didn't come back.  What was potentially going to happen to me, ie. getting really sick, having to be germ free and that overall I was going to be not quite myself. 
Well, they had so many questions about chemotherapy medicine, and their own ideas of how it should be done and so on,  and then as if it was a no brainer to them, they both said
"Mama you got to do whatever you have to."  That was it.  Decision made.
Throughout all this deliberating and processing Phil and my Auntie just kept saying "We just want you at that party!"
Believe me I've already RSVP'd to that party......... and I'm going!

How do you tell your kids you have cancer?

One of the many questions that I have been asked is probably an obvious one and you may have thought it yourself
"How did you tell your kids you have cancer?"
Well to say the least, it was not easy, and it was one of our first questions to my GP, Dr. Ferg when she delivered the news of my diagnoses to us.  Her advice, which we took, was to not tell the little kids right away, rather, tell the older girls (who already knew something was up) and then wait until closer to my surgery date to tell the little kids.
My older girls Abby(14) and Georgia (11) already knew that something was up because they had seen my big ice pack patch that I was wearing the day I had the biopsy done.  I was really uncomfortable and Abby asked what was bothering me.  I told her I had the biopsy and she said right then "Is this what I think it is?"  so smart, I had to tell her what they were testing for.  I'm pretty upfront with my older girls they don't need sugar coating, in fact, they don't want sugar coating they want the whole story.

On the day of my diagnoses, I picked Abby up from school, I was nervous and didn't want to say it.  She kind of sensed something but had no idea what was really going to come out.  It was while we were driving, that I told her. I simply said that the testing I had done came back and that
"I have breast cancer, and I'm going to be okay."   Her reaction was what I expected, a very sad face and a look of concern and almost desperation.  I reassured her that this was going to be okay, and it is just a blip our road and we will get through this.  We talked about all her concerns and I told her, as I always do, that she can talk to me about it any time, any place it doesn't matter if it's the middle of the night she can come talk to me and Daddy (yes she still calls him Daddy at 14!)  She seemed content after our long discussion and I explained the plan to her of what was to come, testing (MRI) Dr.'s appointment's (Dr. Ross, surgeon) and then that surgery would take place.  I didn't know much else at that point. 
Next was to tell Georgia, I took her into my room by herself so we could have quiet.  She had no idea what was coming.  She knew about my biopsy, she just didn't know what it was for.  I told her the exact same thing as I did Abby, "I have breast cancer, and I'm going to be okay."  Her reaction was silence, and you could see the wheels ticking in her head.  She didn't have a lot of questions, which is unlike Georgia, I think the word cancer froze her into disbelief.  So I did most of the talking.  It was a calm and collected conversation, with lots of reassurance that everything would be okay.

Of course, I really didn't know everything was going to be okay.  Jeezuz, I wish I knew that!  I have a belief, and I truly have believed that this is going to be temporary and life will go on.

The little kids came next, it wasn't long before Stella (9) caught on that something was up.  She started asking questions, so it was time to tell her.  I told her quietly one night in her room, again I said the same thing, "I have breast cancer, and I'm going to be okay"  she looked puzzled and worried.  She had lots of different questions, when kids or anyone for that matter, hear the word cancer they immediately think death. We have NEVER used the word death surrounding MY cancer.  I have never felt it necessary.  It was ironic that about 2 weeks before she and Vinnie had participated in the Terry Fox run at their school, so there had been a lot of talk about cancer and his death in the past couple of weeks so I had to reassure her that my cancer was not the same as his, and that medicine now, is much better than when he was fighting cancer.  She seemed content with my explanation and we just gave her constant reassurance and answering of questions whenever she needed it. 
We told Mr. Vinnie(6) closer to my surgery date, about a month after I was diagnosed.  The other kids knew that we hadn't told him yet and were respectful of that choice to wait to tell him.  It's funny how the natural nurturing instinct kicks in with kids, all three girls were concerned for him and wanted it to be the right time to tell him.  We told him very matter of fact like, "Mama has to go to the hospital to have an operation to take out a little lump inside my breast."  He instantly had lots of questions and we sat an answered them one by one.  He is very inquisitive like most kids, and wanted to know about this "little lump" and eventually it lead to the naming of it, which was ultimately telling him that I had cancer.  He immediately referred to the Terry Fox run and all he knew about that, and it was a comfortable discussion that didn't seem to leave him any worse for the wear.  Thank goodness!
Some of the questions that my kids had were:
"Why did you get cancer?"  A: There is no reason, not even the doctors can tell me this.
"How did you get cancer?" A: There is no reason, not even the doctors can tell me this.
"Does it hurt?" A: Yes, and I am thankful for that, otherwise we would not have found it.  It won't hurt forever because the doctors are going to take it out.
"Will it be gone when they take it out?"  We hope so.

We kept it simple, and normal conversation.  I know it sounds odd to use normal and cancer in the same description, it is what we had to do.  Of course the answers to the questions above and the abundance of other questions were elaborated on in more detail.   The most important thing was to stop and answer those questions whenever they had one.  Believe me they come up at all different times!

The only thing I have kept from them is my fear. My fear is not "the dark place" in fact, I have never gone there.  My fear is around my kids, I didn't want my kids to see me sick, vulnerable, and weak.  Not because I have a hero's syndrome, it's because a parent's weakness brings an uncertainty to kids and uncertainty brings fear, and the last thing I wanted was my kids to be scared.  I was scared enough for all of us!

At every step along the way I have kept my kids informed and involved.  I believe that kids can't be kept in the dark about these kinds of things.  It just makes it worse, for you and for them.  Kids are smart and can handle a lot more than we give them credit for.  Letting them know they are worthy of knowing the important stuff helps them cope.  I think my kids are thankful for being informed and included.

 



This is my fight, it is a family battle.

The rest of my plan....

I thank you for all the congratulatory wishes after my last round of chemo.  It indeed was my last round of the intense portion of my chemotherapy and I am very happy to be through that.  I have very mixed feelings about celebrating though, as I still have a long road ahead of me.  I have had a busy week this week and last going for tests and Dr.'s appointments getting ready to start radiation and continue with the Herceptin treatment.  I had a CT scan last week and there they tattooed my breast in three places to mark the place that they will align the radiation beams every time.  They mark you with a huge red X in the places that they want to tattoo you.  Then they use a little pin poker thing that has black permanent ink in it and poke it through the skin in the middle of the X.  I can only see one of the tattoos, apparently you can't really see them but the radiation people can.  Maybe they are glow in the dark!

Me having the scan

The MUGA scan machine

I also had a MUGA scan on Tuesday which was to re-test my heart function.  The Herceptin decreases your heart function, so they took a baseline MUGA before I started chemo and then I have to have one every 4 months to ensure that my heart is functioning the same as when I started.  It is a multi-part test that includes injecting me with a solution that attaches to the red blood cells (45mins), then taking out some of that blood and then mixing it with some other solution (5mins) and then having the scan itself.  That big block thing beside me gets moved to three different positions (10mins each) and takes moving images of my heart.  They accessed everything through my port a cath (the injections and blood draws.) It took almost three hours!

 

Today I will go for my first round of Herceptin, which is the drug that specifically targets my HER2 cancer cells, if any, that are floating around in my body.  Remember, all this treatment is called prophylactic (preventative) so there is no guarantee it will work to keep cancer away and there was no guarantee that I even needed to complete this treatment.  I have put all my eggs in the basket that tells me to do "whatever I have to" to ensure that I never get cancer again!  The doctors tell me that I should just breeze through this Herceptin treatment, pretty much with no symptoms.  I hope they are right! 

I will start radiation on Monday April 8.  I am not really nervous about radiation, I do hope that there is not much affect on me and I can carry on as normal.  I have been told it will make me quite tired/fatigued.  They will do 20-33 rounds of radiation.  I had a CT scan on this last Tuesday and based on that Dr. Sally Smith will determine how much radiation I am going to need.  She originally thought 28 rounds, then said 28+5boosters, and then on my last visit she said she thinks I can get away with 16+4boosters, so we will see.

They will run the Herceptin every 21 days and the radiation will continue through my Herceptin treatment.  It is called a dual modality treatment.  I hope I'm still standing at the end of April!

I have been really behind on my blog writing, I have been having one of those times when I think, "who really wants to read about what I do in my day?"  Apparently people love to know your business and I am enjoying writing so I will get back on track and write more often.
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