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Wednesday 13 June 2012

Warning, this post is not for the feint of heart or children.


June 13th 2012 Evening
Holy Camole?  Or however you spell that without me saying the sh... word...although I will probably say far worse than that in this post....
Today has been the most overwhelming day of my entire life.  It started relatively positively with me getting all gussied up (NOT), for my 9:30 meeting with the Oncologist at Lions Gate Hospital.  We arrive promptly at 9:30AM (Dad always told me to never be late), to find out that they have no record of my appointment with Doctor S.  Um, excuse me?????  You mean to say we sped all the way down here to get here on time for nothing????  So we wait and we wait..  I call Dr. Q's office to tell them what's going on - get an answering machine and finally a call back from a women who herself hasn't a clue.  (sorry not sure if that is proper grammar and I'm such a stickler).  So there we are, sitting in Oncology, which really sucks.  You have no idea.  I mean, it's hard enough going to a cancer ward and seeing all these terribly ill people if you are just visiting, but to go there and see them and know you are one of them, well, that's just impossible to grasp.  I was trying so hard to be brave but every time I saw someone who was bald or green/grey from all the illness and chemo, well I just broke down.  So...where was I?  Oh yes, here we were, Wade and I sitting there.  Me, crying occasionally ever so quietly on his shoulder, and Wade sitting with STEAM coming out of his ears.  If any of you know Wade, you will know that this is a man who never gets angry, and I mean never.  He's the most gentle, calm person you can ever meet.  You would not have recognized him today, he was all Alpha male and pissed right off that I "a Cancer Virgin" had to sit there in that situation and see it all.  (We found out later that most first timers get to meet Dr. S in his office down the street, it was only because my case was so urgent that we had to go directly to him in the hospital).  
Finally an hour after waiting - I know that's not long for most of you, but I'm anal about being on time and anal about NOT waiting - a lady calls us to go half way down the hall to sit and wait for Dr. S.  OMG that did it for me.  Half way down the hall gave us a clear view of everyone in the beds and chairs hooked up to their chemo treatment.  It was so sad, so devastating, so unreal.  I couldn't look, I couldn't move, this can't be real, this can't be for me??? Why am I here? No seriously, this must be a joke.  Cancer is only a word, right.  It's not real and it's really cannot be happening to me.  However it is, as much as I still don't understand or realize it, it is.  Thankfully this lovely, women who took us "half way down the hall" realized I was a "Cancer Virgin" and saw the affect (damn I don't know if it's affect or effect) this was having on me and took us directly into the examining room (ahead of a poor little gentleman).  Then the information overload started.  
Dr. S was fabulous, young, informed, kind, just the best kind of person you could want in this situation.  He was very direct -I think because I presented myself as someone who wanted "direct, no holding back, give me the shit" kind of information.  He spent an hour and a half with us.  I will try in a non dry way to explain what he told us.  Hold on to your hats and undergarments and anything else that may fly off at this point - although I will be as PG as I can.  
The results of the biopsy were positive for cancer in the breast skin tissue, positive for cancer in the breast itself and positive for cancer in the lymph nodes.  The cancer is Inflammatory Breast Cancer - read Cancer on Steroids - or as he said Advanced Breast Cancer.  It is rare (less than 1% of all breast cancer patients have this), it is fracking aggressive and it's eating away at me.  Me, with this body that I've tried all my life to make as best as it can be.  I mean I didn't watch all my food and exercise and all that bull for nothing.  Yikes, so I'm taking this all in and my mind is reeling...but I'm listening, yep I'm listening, keep spewing, keep throwing this at me.  I'm strong right.  So, the good news is, it's Estrogen Negative, phew and it's HER2 positive http://www.mayoclinic.com/health/breast-cancer/AN00495  now this is all good news....it means I have a good chance of surviving, it has a specific type of treatment and it's a better diagnosis than if it was not HER2 positive.  Hmmmmm I guess one takes every single thing as positive at this point.  However, that being said, we don't know yet if the cancer has spread to other parts of my body.  So, before we even go any further I need to have a CT Scan.  Since this is urgent because this asshole is eating away at me as I sit there, Dr. S with all his magic power arranges for me to have the CT Scan within an hour.  I won't go through all the rest of the stuff he told me as we sat there, suffice it to say half of it went in my mind, the other half flew overhead as I sat there looking at him thinking, you've got this wrong.  I'm too young, I totally rock at loving and living life, this has to be a mistake.  Then the other side of me, the nasty little guy sitting on my shoulder is saying, perhaps you deserve this.  Perhaps you aren't kind enough or grateful enough, perhaps you need to be humbled, you didn't live the right life and now you're going to have to learn the hard way.  Damn my catholic guilt is kicking in.  Oh well, I'm on the elevator to hell now, next stop CT Scan.
Down we go to radiology where I get into the lovely clothes again

  and sit and wait for my scan.  I sit next to a lovely lady and her husband and I'm still living the life, you know, happy "it's all good" kind of life.  She asks if I have to drink the liquid?? No, I say, no one gave me a liquid. She says you're lucky, it tastes awful, apparently she has to drink 3 glasses of it.  Of course, you know me, I ask her what she is here for.  Oops shouldn't have opened that pandora's box.  I was so humbled, she has had Colon Cancer for six years.  Six years??? How horrible, if I could kill cancer I would.  I wouldn't be nice about it either.  It would be a horrible, nasty, long process and I'm sure thousands of people would join me.  I mean what did mankind do that we deserve such hell, and not just the people who get cancer, but what about the families who have to support us.  I feel like such a failure getting this, I'm supposed to be the strong one, I'm not supposed to burden my family with this.  Oh well, shit happens right, so off I go to get my scan.  They put in an IV for the dye, now this is interesting.  I had a CT Scan about 25 years ago, when I had a lot of migraines, and I do recall the dye, but I certainly don't recall the side effects.  Perhaps because the are different now.  What I do recall is back then in the olden days, the CT Scan machine didn't speak to you.  Yep, he speaks to you.  The technician neglected to mention that, and after having an MRI last week, which is far worse than a CT Scan, I was not expecting this.  So you go into this tube, with the IV in your arm - don't worry Michelle, we will come in and let you know when we're putting the dye in - okay, so nothing to worry about, then this automated guy suddenly shocks the hell out of me and says "breathe in", "hold your breath" oh hell, I guess I'd better.  I hope he tells me when to breathe again.  So I breathe in, I hold and hold and finally he thankfully says, breathe.  Phew!  He repeats his instructions  over and over and i'm very obedient, I breathe in, hold, and breathe out.  Then the technician comes in and says, we're going to inject the dye now.  Oh, okay!  It's going to burn as it goes up your arm, it's going to make you get hot all over and it's going to make you feel like you have to pee, but that's okay, you won't pee, really I promise you won't, it will just feel like you have to.  Wow, that's comforting :-)  Oh well I say to myself in my mind (that's actually still functional believe it or not), this is nothing compared to what's going to happen to me in the next few months, so just lie here and think of Mexico.   So I do, and it's all fine, really - although I did get all hot and bothered, however, it's all over in no time and off we go back to Oncology to meet with the nurse.
Okay...I'm going to fast track to the end of the story today, because I am sorry this is getting long winded and I'm getting tired.  So, good news is great news.  The cancer has not spread to other parts of my body - 99% certain, and they will monitor that.  Oh and by the way, you start Chemo tomorrow???  Excuse me??? Yes, it's serious, it's a rush, we cannot wait, so we start tomorrow and it's going to be a great cocktail, you're really going to love it.  We're going to give you 4 drugs via IV for 4hrs/day every 3 weeks for 8 times (read 6 months), and then only one drug for the remaining 6 months.  It's called ACDT protocol, however all I heard was this.
Drug # 1 - The Hair loss, nausea and mouth sores drug - but really we'll give you more drugs to counteract that.  Oh and it can cause heart failure, so please sign this waiver.
Drug #2 -  Diarrhea and burning on urination drug - oh it's not so bad an if it gets very bad, take immodium.
Drug #3 - The nerve Damage and crazy nails drug - we promise, you will get your feeling back in a year or so, but you may have chemo brain LOL!
Drug #4 - Oh yeah more heart problems and leg swelling - I thought chemo was supposed to make you skinny???
Then after each session I get an injection that is supposed to help my immune system stronger, because it's kind of dead now after all the poison that has been pushed into it.  This injection costs $2700 per injection.  Yes, you read that correctly $2700 per injection!!!!  The way I calculate that is around $47,000 just for that injection alone, which is NOT covered by BC Medical, but may be covered by my group plan.  This is on top of all the prescription drugs that I have to take that thankfully are covered 80% by my benefit plan and the natural medications I need to take to heal that are not covered by any benefit plan.  Man Cancer is an expensive proposition.  We never hear that side of the story now do we.  
The best part of my day today was when we got home from the hospital.  I was exhausted and raw and shocked and really couldn't think straight, so when I walked in the door and saw what i saw, well I have to tell you, I was in awe and so honoured and so proud.  My beautiful daughter had got her entire two grade 5 classes involved in a project and they had made this huge card for me.  It was sitting on the stairs and was the first thing I saw when I walked in the door.  The front of the card was all about "boobies" and "I love boobies" and the inside of the card had a group photo of each class and it was signed by everyone including the principle and the teachers.  I couldn't not believe she did this, I am so blessed by her generosity and her love and her joy and everything that little bundle of love has insider her.  Now that is love.  

So, enough for now.  My first chemo is tomorrow at 9AM.  I have no idea when I will be able to post my next blog, and I know there is so much more going on in my mind right now, but I am tired, so damn tired.  
Goodnight and thank you.
Yours in Health!
Michelle

10 comments:

Unknown said...

June 13, 2012 | Anka copied from previous blog post.

Sleep well my friend. Tomorrow is a big day. You have been having a few too many firsts this week! I am so happy to hear the fantastic news that it is HER2 positive giving you more treatment options and it has not spread. I think about you daily. xoxo

Unknown said...

June 13, 2012 | Les copied from previous blog page:


What an amazing woman you are.

Unknown said...

June 13, 2012 | Libby copied from previous blog post.

Rest up and kick cancers ass! You have cheerleaders all over!
Lions Gate has fabulous Oncologists.... They were fabulous to me. You are in great hands.
Now go get'em! :-)

Unknown said...

June 14, 2012 | Jean Goldie copied from previous blog post.

What an ordeal! You are very brave. Very pleased about the good news bits. Will be thinking of you tomorrow and sending long distance hugs. What a lovely daughter you have! xxx

Unknown said...

June 14, 2012 | Karen Lutz copied from previous blog post.

I'll be thinking about you today Michelle....it's a tough one....just take it one minute at a time; is all you can do right now. xo

Unknown said...

June 14, 2012 | Jennifer Powell copied from previous blog page:

Michelle, I am sooooo happy that the CT scan was positive results!

Xxoo jenn

Unknown said...

June 14, 2012 | Wendy copied from previous blog page.

What a crazy day Michelle! Way to keep strong! Thanks goodness for some positive results...very very happy to hear this!!! God bless your daughters's heart, how wonderful it is to hear she is being so loving and supportive in the midst of all of this. Always thinking of you. xo

Unknown said...

June 14, 2012 | Jeff Dawson copied from previous blog page:

Hang in there Michelle; your courage and strength is incredible! We're all pulling for you and if there is anything you need, just ask. Keep positive and continue to rely on that wonderful sense of humour too, it's a highly valuable asset my friend!

Unknown said...

June 14, 2012 | Ashleigh copied from previous blog page:

Oh darling - one hell of a day! I felt very positive seeing you today & want you to know you already shone today. There is a light inside that just won't go out. Trust it! If you need anything else please let me know & again if you want to get a juicer I'll get one from my friend who gets the 40% discount. Go to Williams-Sonoma.com to search them. & overall I think this is great news that the cancer hasn't spread. You are going to get through this. It's just a bump in the road & you drive SUPER strategically & are always on time & this time is no exception!!!! I'm always here for you!!

Unknown said...

June 26, 2012 | Tracey Robertson copied from previous blog page:

Ok, so this post was written a while back - it is now June 26 - I am sure you have been through the ringer by now. what I got out of your post is this - You have an incredible chance to kick this in the butt! You ct scan had incredibly positive results and you have a Dr. with pull that isn't waiting 6 months to get on top of this - he obviously wants to see you get better and I truly hope that if something like this were to happen to me, I would have such a great oncologist. You are probably feeling pretty crappy right now but just remember, it is all to feel so much better in the end. Keep your chin up girl and big hugs sent your way!

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