Thursday, April 28, 2011

Still here

It took a bit longer this time, I've been busy with all sorts of things... Bone scan was last week, what a nerve racking time that was ... but the results are in and my bones look normal! NORMAL. How's that for a word on my test results?! Pretty cool right? Brad and I are overjoyed. My abdominal ultrasound also showed nothing unusual, so it hasn't spread to the bones or any organ, so it's officially 'contained' to the breast ... and that one is gone, so I am breathing easy.

Or was, until I realized spring had sprung and my eyes are in full allergy mode. And I don't have those 'normal' allergies that I can alleviate on my own with over the counter drops and pills, no, I have to go to the eye doctor and get cortisone shots in my eye and go on Prednezone eye drops for a while just to manage my symptoms. So this week, I take 4 eye drops per day in each eye, and 2 steroids for chemo morning and night, and 2 anti nausea pills morning and night - but not at the same time mind you - then the neulasta shot is today at 1:30pm exactly and then I have some other pills with dinner and not to forget my sleeping pills that come at a certain time. I swear my brain is full with mush now. I stare blankly at all my pills/drops and I just get a headache. For which I won't take another pill, because frankly I'm pilled out. Ugh.

Other than that, we had a lovely Easter.

But even better, we've planned a trip. Brad and I are taking the kids to Maui when this whole cancer business is over. Next spring. It gives us some time to plan it and something for all of us to look forward to. And, (don't tell anyone, it's just between us and the world wide readers) we are thinking of tying the knot there. On the beach. Now how cool would that be? And when I say, 'we're thinking' of it, I mean, 'it's all booked and paid for' so that's what we'll be doing :)

Don't get jealous that you're not coming, we'll take lots of pictures...although, I wonder if I'll have any hair by then? Hmmmm...if not, it's wedding a la Sinead O'Connor.

The sandy beach will be the real stunner.

Thursday, April 21, 2011

Click click click

It's been about 2 weeks since I've started putting up adverts on my page, at someone else's prompting.
I know they're lame, but hey, I get 4 cents each time one of you clicks on these ads.

I never mentioned it before, since I didn't think anyone would actually click on any of them. After all, have you seen the ads? They've been all about hair loss!

Kinda gloomy if you ask me.
(I guess they taylor them to whatever the topic on the blog is)

Well, guess what? Today I got a cheque for 10 bucks.

Woohoo, a whole TEN dollars. Out of the blue.

What should I do with my new-found fortune?

I know, I will go and buy myself a new hat!

To those of you who have wondered what the ads were, now you know.
And to those of you who clicked on them, thank you.

Feel free to click on them any time... I could always use some more hats!

This weekend is busy with family and chocolate, I will catch you all next week and I'll talk about my bone scan then. (hopefully I'll have the results by tuesday)

I hope you all have a sunny weekend.

Sunday, April 17, 2011

My sweet ride

Maybe it's an early birthday present.

After all, I turn 36 in 2 months, why not?

I had an older 4 wheel version of it, but it was pretty basic.

Now, Brad's co-worker was kind enough to spend some time custom tweaking a 2 wheeler version for me.

Not only is it more sturdy, but he equipped it with mirrors, break lights, a head light, an old style horn, a water bottle attachment (with bottle included!) and since it's Easter... he added an easter basket full of goodies.

Brad brought it home the other day, and I was overjoyed.

I bet no other 35 year old has one like it!

About 6 days after my chemo infusion, I depend on this mode of transportation to get around, so I appreciate the 'pimped-out-look'.

After all, I didn't lose my sense of style!!

Check it out, and don't be jealous...

Tuesday, April 12, 2011

We don't have much time

I am feeling like the walking dead. On crutches.

My bone pain has subsided, but now the joint pains are starting... for you ladies that have had babies, the best way I can describe this feeling is - when you are about a month or so before you are due, and you feel your hip joints loosen and not be very tight, remember that feeling? That is how my hips feel right now, and my knees. Not very steady on my feet.

In fact, I literally fell head over heels down the stairs earlier today.

But I will get to that in a little while.

First I feel like I must write today, instead of tomorrow or the next day, as I had originally planned, because I found out today we are running out of time.

This morning a well dressed gentleman came to my door (which I answered, and I promise I won't do again Margie) and he let me know that the world is ending in exactly 39 days. May 21, 2011 to be exact.

He was very credible, he had his own fliers he had printed out crookedly. My first thought was 'shit, now I can't even finish chemo' - what a bummer. I was gonna take a flier, but then I remembered the dooming date and got very busy all of a sudden. There's so much to do that I've been putting off.

I told the gentleman I had to go live in fastforward for the next month so I had to go, he gave me a sad look. I think I am not on his list of people he thinks will be saved with him.

But think of all the things I've neglected, like blogging for example. How foolish had I been, assuming there was always tomorrow and I could just take today to concentrate on healing and getting better. Well no more. Here is the post people. Take advantage, but don't take too long reading it. In fact, perhaps just skimming through it may be better... I bet you'll have to hurry now too.

We're all in this together.

Oh, and the stairs thing? Turns out I fainted while I was bending over at the top of the stairs, to pick up a dog toy to throw to our dog. I don't really remember much, which is good I guess. I know I called 911 and I know I slept for about 5 hours straight after that. Seems my bloodpressure was probably a bit too low this morning (they say i should EAT in the morning first... sigh, all these rules) and combined with all my chemo meds, it was too much for my body)

Tonight, Brad and I were gonna watch a movie (Can anyone believe he hasn't seen "My best friend's wedding?" - he's gonna so love it that I posted that on here), but now after pondering the days' events, we may reconsider.

There are probably better things we could do with our next 38 days.

Like go to Home Depot and buy a bigger lock to keep out the nutbars.


Wednesday, April 6, 2011

Update: Everything got turned upside down - looong post

Thank you everyone. I do feel better having switched, I feel like this oncologist #2 is more on the same page as me. I also liked (as did my family and some of you commented on it as well) that he didn't hum and haw when I asked him what he'd recommend to his daughter. So, I chose the same regime. And the leukemia 1% side effect, I looked through my old papers in my other chemo treatments, it was there all along, apparently ANY chemo has the risk of that, so not just 'the red devil' ... this is the one that has the heart problems sometimes too, but in 1% as well, and there are pills I can take for it if it happens... and still live with it. All in all, I'm happy with my decision. The new drug makes me a bit more tired, and makes my pee red, which was entertaining for a while, but now I'm just waiting for the bonepain to kick in... I had my shot yesterday at 1:30pm, so that means around 9 pm tonight, I'll be back on the floor moaning in pain :( ... What a weird countdown to have, lol. Thanks y'all for the good thoughts, catch you in a few days :)

Remember a while ago when I had to make up my mind about what chemo regime to go on, and I had all sorts of statistics handed to me?

Well, I switched oncologists this week, and now everything is starting from scratch. My first oncologist and I just didn't mesh. He'd answer most questions with 'whatever you want to do' instead of guiding me to what the norm in his field was. He almost discouraged me from doing chemo, saying studies show that it may not be needed, and then said 'but if you want to do it, that's fine' and when I asked him about the different chemo's, his standard answer was 'six of one and half a dozen of the other' - which is beyond frustrating, and not having been born here or grown up here, I hadn't heard that expression, I didn't even know what it meant. Anyway, long story short, we were not a good fit so I had to look elsewhere.

After all, I have a hoodie that says 'my oncologist can beat up your oncologist' and I would like to wear it sometime... It's been collecting dust, since my oncolgist was a bit of a pansie.

So, I found a second oncologist and I met with him this week. I honestly thought I was just gonna have a chat with him. I didn't for a moment think that I would end up switching to him right away, if at all, and certainly didn't think that I'd change my entire chemo regime after talking to him. I went alone, expecting a regular meet and greet, and about 1 hour later I found myself really wishing Brad had come with me. Or anyone for that matter, someone who could help me make sense of it all.

Let's start at the beginning. I am not going to explain everything again, since I've done so in older posts, but my pathology report states that I have 2 positive sentinel lymphnodes for micrometastes in them under .2mm in size. And the armpit lymphnodes that they took out, all 8 were benign, meaning non cancerous. Fantastic news right?

My first oncologist said that put me right in the node negative status, meaning the cancer hadn't spread to my lymphnodes, which is why he said chemo was elective, and the chemo he had put me on originally was only 4 cycles. Not exactly aggressive, but to him it seemed enough since he considered me low risk. I was never fully comfortable with this regime, I told him that several times, but again, he and I didn't see eye to eye... and that wasn't only because he never ever made eye contact with me either. We just were on totally different pages.

The new oncologist looked at my pathology report and said 'well, if I were to see you before you had seen anyone else, based on your report I would call you node positive' - WHAT? Node positive? But I thought my lymph nodes weren't affected in my armpit? "True" he said, "but your sentinel nodes were, and even though it's only a micrometastes that measure less than .02 mm it's still cancer cells in the sentinel nodes. That, in my opinion still counts as the cancer spreading, or at least trying to spread." That man has some logic to him. It DOES make sense what he is saying.

5 years ago, we didn't have access to the sentinel lymph node biopsies, therefor we'd never have found these micro cancer cells there. We would have been under the assumption that I was node negative, based only on the armpit nodes... But now that we have this option, the oncologists are split down the middle, some oncologists think that this type of result makes me node positive, some think it makes me node negative. Depends on the oncologist.

That is hard for me to hear, because it puts me in no man land, neither here or there. I would rather err on the side of caution though so I tend to agree with oncologist number two that I should be treated as a node positive patient. Which makes chemo not only recommended and necessary, but we need to extend it 2 more cycles, which now brings me to 6 cycles in total.


Oh, and then we tackled those statistics again. He told me the numbers that I was shown are grossly wrong. (I had 12% of re-occurrence change if I didn't do chemo, and 4.8% re-occurrence if I did do chemo) He said the statistics are based on an 'average' breast patient. Which means that the average age is over 60. This second oncologist said that since I am so much younger than that, being 35 my chances of re-occurrence are much higher. In fact, way higher, like 40% chance of re-occurrence if I don't do any chemo. With chemo it goes down to something like 20%... so not exactly the 4.8% that I originally was told. THEN if I go to the 6 cycles, adding the very medication I didn't want to add (THE RED DEVIL - for those of you who are familiar with breast cancer chemo drugs) it will give me an additional 3%-5% more chance of survival, bringing the risk of re-occurrence to somewhere around 15%-17% when I'm all said and done.


So, I had about half an hour to make up my mind, since my chemo #2 was scheduled for the very next day, and IF I wanted to switch everything, I would have to act fast. We'd have to do bloodwork, call the other centre and switch everything over and then find a spot at the new centre to fit me in at last minute notice.

Which we did. I made the decision after I asked the doctor what he would do if it was his daughter, and he replied 'no question, the 6 cycles'.

So, I am now doing 6 cycles, I am getting the 'red devil' which I tried so hard to avoid because of the possible heart damage (1% - 2% of patients get weakened heart muscles) and the risk of leukemia (less than 1% get a chemo induced leukemia that is not treatable and can show up about 7-8 years after treatment) ... so after weighing the pros and cons, I've decided to go ahead and do it anyway for the 3% - 5% increase in survival that it can give me.

I am mentally drained.

Today was the second chemo round, and it was all new again, since we added the new drug. It was pretty uneventful, which was good, no allergic reactions, and now I'm just waiting what the new drug's side effects will bring. I am told it will increase nausea, fatigue and my pee will be red.

Kinda funny about the pee thing, but we'll see about the other things.

That's why I've been quiet here, I'm hoping I made the right decision. I think I did. I feel better about this chemo therapy than the previous one, and I feel like I'm doing everything I can to beat this thing.

I am also adding the hysterectomy with ovaries removal and the 5 year oral chemotherapy to it since I need to block all hormones forever.

If this isn't sufficient, then I give up.

*throwing hands up in the air*

But, for now, I will go get my oncologist hoodie out and wear it with pride.

Friday, April 1, 2011

Update on: And - bald.


'smooth like a baby's bum by midnight' is what I thought I'd end up like. Instead, it came out in awful patches and I look more like the neighbor's cat that escaped a fire... some patches have some hair, some patches have none at all.

No, no picture this time until it ALL falls out!

So, I got my wish.

My hair is falling out by the handfuls. I mean seriously, at this rate I'll be smooth like a baby's bum by midnight.

It's weird though. Pulling on it and seeing it come out from the root... I'm curious to see how it will look when it's all done falling out.

I guess this weekend marks day 18-20... better late than never.

I am looking forward to not shaving my legs for a few months... bring on summer!