First 'setback' of sorts

Coming into week 4, and I'm feeling not so bad.  Still have the fatigue, still have the issues with drinking.  But nothing I can't live with.  Oh, and the diet - I hate not being able to eat 'normal' foods.  Anything with even a smidge of fibre in it reeks havoc on my bowels, and anything 'gas' producing (like garlic....yummmmmm) I will be paying for over the next 24 hours.  So I basically have to avoid most vegetables.  And it sucks.  But then, so does cancer.  So I guess I can suck it up and deal with it if it means getting rid of the cancer.  Who ever thought I'd miss eating a salad.....

Anyway, I had noticed over the weekend that things were tasting a bit odd, and my mouth had a fuzzy feeling every now and then.  I have been rinsing my mouth with club soda like I was advised, but I will admit, I wasn't being exactly religious about it.  Me being the typical bad patient - I was feeling ok, so it didn't seem like a big deal.  Monday morning, my mouth was sore and gross.  It doesn't take a genius to figure out I had just scored my very first 'taste' of oral thrush.  Oh joy.  Thankfully Monday's are my 'speak to the nurse' days.  She took one look at my mouth, agreed it was thrush, and went off to find the doctor.




An hour later I have a prescription for a lovely mouthwash designed specially for the cancer patients.  And let me tell you, it is DISGUSTING!  It is the worse thing I have ever tasted.  Ever.  No, its probably worse than that.  One thing they did not mention to me was what was actually IN the mouthwash.  I thought it was going to be like just something to treat the thrush.  The directions were to take the dose, swish it around your mouth and swallow.  Ok, I can do that.....

So I take the dose, and the second it hits my mouth I start to gag.  It is truly revolting.  So I'm swishing it around my mouth trying to figure out how on earth I'm going to swallow this stuff without throwing up.  And I'm swishing, and I'm swishing, everyone is laughing at me, I'm still swishing.... Then I'm thinking hang on, my LIPS ARE NUMB!  Now I'm panicking - why is everything going numb?  Am I having an allergic reaction? Everyone is still laughing at me telling me to swallow it already, and I'm like standing there with my whole mouth feeling frozen.  I finally manage to swallow and I have NO feeling anywhere.  Then I click - there's a local anesthetic in the mixture to help with the sore mouth.  OMG.  I am so blonde.  And I'm really not sure I can do this FOUR TIMES A DAY!  God, I really should've been more vigilant about the mouth rinses.  Sigh.

On the plus side, my blood work is still looking good.  Chemo round 4 was a breeze again - long and boring, but no issues there.  I got to spend Christmas day with my family - the New Zealand contingent are definitely feeling the cold!  And my Christmas turkey turned out nice and juicy.  Having everyone here supporting me is fantastic, but exhausting.  Cooking a meal for 6 people definitely drained me of any ounce of energy I had, but it was totally worth it  :)

I'm now heading into the last of my outpatient treatments.  It's getting so close now, it's almost exciting.  I can't believe how quickly this time has flown by.  To think it wasn't that long ago that I was struggling to comprehend what was going to be happening.  And now I'm counting down the last of my treatments!  Woohoo!!

The halfway point

So I'm a bit past the halfway point now, but I have a bit of catching up to do!  This past week has been exhausting, and I just haven't had the energy to sit and type.  Which is funny, because I'm such a computer nerd, for me to NOT be able to sit at a computer, you know things must be bad :)

Anyway, the halfway point - it was an awesome feeling!  I had an awesome chemo nurse this week - she got my IV first go, no mention of tricky veins, and got the chemo up and running pretty quick.  We were in a different unit this week, so had a window seat with a lovely view.  Plus, now that I'm finished with my antibiotics, I can actually eat again.  So mom and I shared a yummy lunch of a wrap and some fresh fruit while I was getting pumped full of my toxic poison.  Same routine - fill me with fluids, fill me with steriods, fill me with poison, then some more fluids to flush it all through, and I'm on my way.  This week though, the steriods didn't give me that lovely burst of energy.  I just went home and crashed.

The next day was radiation blast #13 - I had officially reached the halfway point of both the chemo and radiation.  It's all plain sailing from here!   This also marked the last day before everyone starts arriving for Christmas.  Despite all that's going on, I get to spend Christmas with my whole family, something that hasn't happened in quite a few years.  And I never thought I would get to see any of them here in Canada in the middle of winter either!  So I'm trying to rest up now while I can so I can have the energy to keep up with them all.

Nothing much else going on.  Still feeling lucky that I don't have typical "cancer" symptoms other than fatigue. But keeping my fingers and toes crossed that I'm not getting too cocky about that.  Oh, the only other thing I'm struggling with - drinking.  I'm usually a big water drinker, but between being told NOT to drink water (better to drink juices and things with calories and nutrients apparently) and everything tasting weird, I am struggling finding something to drink that tastes ok.  Nothing worse than trying to drink a litre of something that makes you want to chuck up!

2 weeks down!

So today marks #10 of 25 radiation treatments.  Two weeks down and counting!  So far I'm feeling very blessed. I went into all of this worried about the unkonwn and really not knowing what to expect.  I had an overwhelming fear that radiation was going to hurt, and being the sook that I am, this freaked me out the most.

However, I am blessed (knock on wood) that everything is going so well. The only major side effect I'm getting so far is just tiredness.  And the fatigue is unlike anything I've ever experienced before.  It's worse than working three 12 hour shifts in a row.  I find that I just crash at the weirdest times - I'll be going along fine, and then hit that magical brick wall and I'm done.  So I tend to spend a lot of time on the sofa just sitting.  But the rest of it is just a breeze.  When I see all these other people in the clinic that are all washed out, pale, sick looking - I feel a bit like a fraud really.

Now chemo - wow, thats a whole other story.  I hate chemo.  It is the worst 4 hours of my week. (yeah yeah, I know - suck it up princess!)  Chemo *should* be relatively easy.  You go in, they stick an IV into your arm, spend an hour getting loaded with fluids and steriods, an hour getting the nasty chemo mixed with a drug to make you pee (can't let the chemo wreck my kidneys!) and then an hour loading more fluids in to flush the kidneys.  Easy peasy.

Not so easy it would seem.  Apparently I have 'terrible' veins.  This is nurse speak for "oops, i missed...again".  I know my veins are fine.  I've had many nursing students practice on me over the years, and apart from a few nervous newbies, they never miss.  I have lovely veins.  I'm healthy, young (and very well hydrated!).  The first week of being told how bad my veins are was depressing.  I have an arm covered in bruises and facing 5 weeks of this torture.  But after I got over my initial 'oh woe is me' moment, I started to watch the nurses a bit more closely.  Then this week, same thing, difficult getting an IV started, blame my veins, blah blah blah.  But as I watched, they missed every single patient.  These nurses work in a chemo unit where they start countless IV's on a daily basis, but their technique basicall sucks.  They should not be missing as many IV's as they do.  And then to blame the PATIENT for having 'bad veins', that just sucks.

I don't mean to come down hard on my fellow colleagues.  Everyone has a bad day.  I've missed my fair share of IV starts.  Everyone has.  But I never ever blame a patient for MY miss (except that occassional annoying one who pulls their arm away just as you get it in....) and I never blame their quality of vein for my success or failure of an IV start.  But it irritates me no end to see these nurses do just that.  A patient can't control their veins, especially some of these older patients who look like they've been through a few rounds of hell.  Why make them feel worse than they already do?

And while I'm having a moan and a groan....  My chemo nurse this week was a real treat.  She looked like someone fresh out of the pages of a nursing school brochure.  Very pretty, makeup perfect, hair perfect, nails perfect...you get the idea.  Hang on....Nails?  Oh yes, very pretty ACRYLIC nails!!  Holy moly, I really wanted to say something!!  Worst infection control risk ever in a high risk environment with neutropenic patients???  You've got to be kidding me!  And her bedside manner - well, after bitching about my veins, bitching about my pump that kept beeping (yeah, like that was my fault too) and then getting antsy because her time management was a bit out (an hour late getting my infusion started) so she was forced to stay back until I was finished, I could tell I wasn't going to get any warm fuzzies from her!  She would ask a question but walk away before I would answer - made me feel very listened to. <eye roll>  A patient in another chair had a reaction to her chemo, and the nurse got annoyed that she had to give benedryl and now the patient would be there longer, and it was all so inconvenient.  You see a lot in the 4 hours sitting there watching all the comings and goings, and how some of the staff interact with their patients.  I honestly would have thought that an oncology nurse would be more compassionate, but I'm seeing quite a few that seem to be there for a lack of a job anywhere else more 'fun'.

Anyway, thats my little bit of rambling for the day.  I only have 3 more chemo sessions to get through - hopefully I'll get someone next week who will be fantastic and restore my faith in the system.  On the other hand - my radiation team are awesome.  They're very chatty, always have a laugh with me, and help me forget that I'm lying there pretty much naked on a daily basis.  And I tell you, that little bit of humour and individual attention makes all the difference.  Speaking of which - time to go get blast #10!

Frustration going into the second week

Last week was relatively 'easy' as far as treating cancer goes.  One dose of chemo, and a few blasts of radiation. Easy Peasy.  Even better - 'my' radiation machine closes once a month for maintenance, and this was the week - so I got a day off to enjoy!  Wednesday I had a ton of energy (thank you steriods!) and no nausea, in fact, I really fail to see what the big deal about chemo is.  I felt GREAT!  So I arranged to meet up with a friend and head off to see my very first live hockey game.  Because that's just what you do when you score a day off, right?  All in all, it was a great night, had an awesome time, LOVED the hockey, and basically felt like a normal human being for a few hours.

The next morning I drove back to the city for my next round of radiation, still feeling not too bad.  I can definitely handle a few weeks of this.  An hour later, home snuggled on the sofa, the exhaustion hit.   I was just totally shattered.  And basically have not recovered.  Friday night, the girls came down to stay the weekend.  Again, I could barely move from the sofa.  On saturday, I had promised a fun filled day of Christmas shopping (not sure what I was thinking!) and I took the girls to the mall.  My day consisted of sitting around while the kids ran off to all the shops they wanted to visit.  By the end of the day, I was completely shattered.  But it was nice spending time with the girls all the same.  Sunday I figured I would be spending lazying around 'recovering' ready for my second week of treatment.  

So today, after a pretty sleepless night, I was all set to start week 2 of treatment.  On the agenda today was blood work, radiation #6, and a visit with my cancer nurse.  One of the things that have been drummed in right from the start is to let the nurses know every single symptom you're feeling, no matter how trivial you think it might be.  I've been running a low-grade fever over the past 24 hours, not enough to worry me, but enough that I thought I should be a good patient and let the nurse know.  So I was all set for my visit.

First up - blood work.  The technician saw my bruise from last week and complained about how people shouldn't always go for the little veins, particularly in patients who bruise easily, and that it was just cruel to put me through all that.  I didn't have the heart to tell her that she did my blood work last week.  Idiot.  But at least this time I got my blood work done in a nice big juicy vein, and not a hint of a bruise to show for it!

Radiation #6 was a breeze - have this down to a fine art now.  Walk in, drop my pants, lie in an awkward position staring at the ceiling, and a few minutes later I'm on my way.

Cancer nurse next - finally.  Now to get some answers on why I'm feeling crappy.  So she asks me how I am, and I tell her all the symptoms I've been having over the past couple of days, including the low grade fever.  Now here's an interesting revelation.  Have you ever been on the receiving end of talking to someone who is just not listening?  This would have to be one of my biggest pet peeves.  If you're going to take the time to ask me a question, at least take the time to hear the bloody answer!  She was so quick to get to the next question, that she really wasn't hearing what I was saying.  So I had to repeat myself a lot, which was frustrating.  And then she kind of dismissed everything I was saying and making me feel like I was a hypochondriac.  Now I know they probably see hundreds of people coming through the doors, and I've certainly seen my fair share of 'annoying' patients who go on and on and on about all their symptoms when you know that there isn't a problem.  But sitting on the other side of this - these problems are 'real' enough - while the logical part of me knows that it's probably nothing, or could be explained easily, the 'patient' part of me is scared, has no idea if this is normal, no idea if this is a side effect, a reaction, something else. Can it be treated, can it be managed, should it be ignored.  I don't know.  I'm not the bloody expert.  I thought that's why I had to see the stupid cancer nurse!  So to have it all totally fobbed off really pissed me off.  She called the oncologist and told her about the fever, and she suggested it might just be a cold or flu brewing.  My blood work is fine, so it's unlikely to be anything else.  Well gee, that's just great, but what about all the other symptoms????  AAARRRGGGHHHHHHH!!!!!!!!

So I basically walked out no more wiser than I walked in - still feeling grotty, but now feeling very disillusioned with all of this.  Oh yeah, and the kicker.  When I asked for a copy of my blood work, she asked why I wanted it.  I said so I had a copy for my own records.  She replied, well, I don't usually let patients have a copy because they don't know what they are reading and tend to freak out for no reason.  WHAT THE F*CK????  Seriously?  What am I? 2?  I said I was prepared to take the chance.  So she went off to get a copy.  Comes back and hands it to me and says very proudly "I stapled it for you".  Great, good to know, thanks, you're so friggen helpful.

So all in all, it was not a great day.  I'm feeling like this is the start of a very long few weeks.  Tomorrow is round 2 of chemo - getting there slowly!

Chemo - AKA fill me up with poison!

Well, the big day had finally arrived - first dose of chemo.  Woohoo!  First up - getting my IV put in.  A common question I've been asked - am I getting a portacath.  This is an implant that sits under your skin and goes directly into the vein.  It means they don't have to blow every vein you own, and all your blood work and chemo are taken from the same spot.  The simple answer is - NO - i'm not getting this.  I only have 5 blood tests and 5 chemo treatments, so I shouldn't need this.  If they start to have issues getting a vein, they'll look at giving me a PICC line instead - which is like a fancy IV line that stays in place for several weeks.  I wasn't too concerned about any of this - i have lovely veins.  Student nurses have been practising on my big juicy veins for years.

So I get a lovely perky nurse who immediately says I have no veins, and sticks a heat pack on me to bring them up.  Huh?  How the hell do you figure i have crap veins just by looking at my arms?  Oh well, you're the expert.   When she came back, she starts poking around in really odd spots..  I couldn't help myself, and mentioned that I usually have a pretty decent vein in the back of my hand or my ACF.  She tells me they're not allowed to use those ones. Hmm, ok.  Finally she's happy with a spot, and preps the area. Now, I'm a big baby with needles, and I'm still not used to getting poked.  I kept telling myself it's just a baby needle, its only a 22G, tiny little needle most commonly used on little old ladies, and then she goes and sticks the needle in and HOLY F*CKEN MOTHER F*CKER SH*T, it kinda hurt just a little bit.  And then the sound no patient ever ever likes to hear from a nurse holding a needle in your vein "oh dear"  She blew the vein. Sigh.  And she blew it well....

So now I have another bruise to add to the collection.  Yay me.  She then called another nurse who got it first pop, and no bruise to remember her by.

I've also discovered that knowing the correct pronounciation to the drug names highlights you as a nurse.  The fact I knew how to pronounce "ondansetron" and "dexamethasone" was apparently a dead give away.  As soon as I said it, she said "oh, are you a nurse" and i asked 'what gave it away?'  She replied, nobody knows the names of their drugs.  I thought this was a little bit odd - i've had patients that know their drugs, but no, apparently here they all go by colour and size.  Good to know.  I'll have to learn the colours now, so I can try and pass as a 'real' patient!

So chemo wasn't too bad.  Just long and boring.  First up they started running fluids to hydrate my kidneys.  Then they gave me a steriod so I wouldn't puke (sounds good to me!).  An hour later, they run the chemo drug with a antidiuretic (a drug to make you pee - lots!) and then an hour after that, they run more fluids through to flush out your kidneys.  So 3 hours of sitting there being bored and making mad dashes to the toilet.

The place itself is sad and depressing.  I was the youngest patient there.  All old sick people.  The guy next to me had an annoying wife who laughed like a hyena every time the nurse said anything.  And they were watching movies on their ipad without headphones, which is against the rules.  Ugh.  Across from me was an asian guy who didn't speak any english, so he was allowed TWO people in there so one could be the interpreter (also against the rules, you're only allowed one person with you), and the woman who was doing the translating did not stop talking at all. Not once.  She was all blah blah blah, the whole time.  So after about an hour of this very noisy environment, my head was starting to ache something terrible.  Nothing worse than a brewing migraine while you're getting chemo.  SIgh.

So my mother and I (note - I only had the allowed one visitor) sat there on our respective ipads, reading books and playing cards.  We must have looked quite the sight really, both sitting there reading. And when we wanted to gossip about the other people, we just wrote notes to each other.  Very juvenille, but definitely helped pass the time.

Finally, I was all done, unhooked, IV removed and kicked out the door.  Another day down, a few more to go.  I've been a good patient - I've taken all the recommened drugs, and so far, no nausea or vomiting.  In fact, the steriods have actually given me a small amount of energy AND I managed to eat my dinner tonight, for the first time in a few weeks now!  Hopefully this good feeling continues!  Tomorrow is a rare free day - no chemo, no radiation, no appointments.  What to do with a whole day of nothing.....  :)

Radiation - round 2

First up today was a fun filled class on everything you ever wanted to know about radiation treatment. This class was very informative, and the technician taking the class was much more efficient - both with her time AND what she was saying!  45 minutes later, I definitely had a much better understanding of what was going to happen over the next 5 weeks. Unfortunately, no one talked or asked questions, so no funny dumb-ass stories to report.

Next up was my radiation session.  Because the class finished early, I was now 45 minutes early.  I handed over my appointment slip, and the receptionist said hey, we have no one waiting at the moment, we might as well take you straight in.  So I quickly changed into my sexy hospital pants and followed her into the room.

Ok, so that's not me  :)  But it's the best picture I could find of the basic idea of what I'm getting each day.  A few differences - 

(1) I'm not sure I look that happy on the table

(2) I have a wedge placed under my knees (for comfort) and another one for my ankles (to stop me moving my legs)

(3) I have to hold onto grips above my head

(4) My top half is slightly more exposed - all the way to the bra line!

But the rest of it is pretty much the same.  They use the lights to match up the tattoos and markings on me to get me into the right position, and then the circular 'thingy' moves around my pelvis in a circle, stopping every now and then to zap me.

15 minutes later, I was done and heading home.  We're in the middle of a snow storm at the moment, so getting this all done slightly earlier than schedule was a bonus - I got home just as the weather took a turn for the worse, so thankfully I didn't have to drive in nasty weather!

So, how am I feeling?  I've had two rounds now.  I've been feeling under the weather most of the weekend - mostly just nauseated, loss of appetite, and the occassional 'hot' feeling (not ready to admit its a hot flush yet). Plus I feel 'crampy' like I'm going to get my period, even though I know I'm not.  The cramps bug me the most.  The information I've been given says it usually takes up to the second week before you feel side effects, so I'm not sure why I'm feeling gross already.  Unless its the antibiotics making me feel like this.  Thankfully I have one more day of them and I'm done.  Of course, I do start chemo tomorrow, so I guess I'll go back to feeling awful again.  Fun stuff.  But I'm trying to remain positive.  23 more rounds of the zapping machine to go.  5 rounds of chemo.  I've got this in the bag! 

Did I just have my first hot flush?

It's one day after my first radiation session, and I'm positive, absolutely positive the oncologist said that it would take a week or two before I started to feel the side effects from all this.  But the biggest ones I am most likely to get - diarrhoea and menopause.  In fact, there is no avoiding the menopause.  They're frying my ovaries, killing all the girly hormones, on a daily basis.  Menopause is my least favourite side effect.  It's right up there with hair loss.  

So here I am, sitting here minding my own business when I started to feel cold.  No big deal, the temperature is dropping, we have a big storm rolling in, and the heat is down in the apartment due to my mother staying with me who finds the heat is too much (bloody menopausal women and their intolerance for heat!).  So I got up and put a cardigan on to take the chill off.  Problem solved.  Then I started to feel blah.  Hard to describe, but basically it was enough of a blah feeling to make me think I wonder if I should check my temperature?  And then no sooner was that thought out, when my face felt like it was on fire.  Just my face.  Totally burning up, like I have a serious fever going on.  Mom is laughing at me saying my face is very red.  

So I'm sitting here shivering from the cold, with a burning face, feeling like I am coming down with the flu or something, complaining to my mother how crap I suddenly feel, when she suddenly exclaims "OMG!  You're having a hot flush!!  This is what a hot flush feels like!"  

Gee thanks.  Great.  Seriously?  Is this it?  Am I going to hit menopause after one bloody radiation session?  I don't even get a warning sign?  No build up?  I haven't had a chance to say goodbye to my ovaries and my fertility yet!

God, I hope it's just the flu......

Radiation - round one

Today was day one of radiation. Weird to start all this on a Friday, but hey, I've waited this long to get started, I certainly wasn't going to be questioning their logic.  Besides, it's every girls dream to get their kit off in front of complete strangers and lie on a cold table naked.  What better way to spend a Friday afternoon huh?

So in usual Becky fashion, I spent the morning trying not to get all worked up about this, but as the time drew closer, the nerves definitely set in.  I've spent the past few weeks listening to people tell me how brave I am, how strong I am, how I've got this, blah blah blah.  But really, I honestly just wanted to sit in a corner and pretend this had all gone away.  But like a good girl, I sucked it up, pulled my big girl panties up, and too myself off to hospital.

After checking in, I went down to the basement level to the radiation areas.  This place is huge - so many different treatment areas.  Which is great that they can accommodate so many people, but at the same time it's sad and depressing that so many people require this service.  

Anyway, I got to the radiation level, where I was greeted by a perky radiologist.  He informed me that they only needed the bottom half off - no sexy gown for me!  This time I had to put on hospital pants.  Not a problem.  I was still doing a happy dance that I didn't have to strip naked after all! (it was a silent happy dance in my head - I didn't want anyone to think I was nuts!)  My happy dance abruptly ended when I saw that hospital pj pants are NOT at all like the hospital scrub pants I was used to.  Instead of the slit and tie up being at the side like scrub pants, these pants had a slit and tie up IN THE BLOODY MIDDLE!  How the hell am I mean to cover up a giant gap in the middle?  And why??  Is this designed for men who need easy access to flop it out?  Too many inappropriate thoughts in my head, in such an inappropriate place!

This caused me a bit of a delay in getting changed as I tried to work out whether to just let my belly button be on display, or put on a housecoat backwards?  No, that looked stupid.  Ummm, what to do, what to do.  In the end, I did what any respectable girl in this situation does.  I grabbed the housecoat and carried it in front of me, effectively covering up the gap in my pants!  Genius!

I had just sat down when they called me in.  Good god people, give me a chance to get psyched up for this!  Ugh!  I dutifully followed mr perky down to the radiation room, where I was greeted by two more smiling faces.  I have to say, if nothing else, these people are very good at putting you instantly at ease.  I lay down on the table and had my legs propped up in some sort of medieval device designed to hold my legs in place to limit my movement.  I was then told to lift my top up to my braline, and pull my pants and panties down past my hips.  WTF?  Oh yeah, the tattoos....they need to see the tattoos. No time for modesty (or a dinner date it would seem) and before I knew it, I was exposed for all to see. Thrilling stuff.  

They spent a long time pushing and pulling me into position - apparently this is the 'worst' part of the radiation itself, the time involved in getting your tattoos lined up exactly.  Once they're happy with how you're placed, they do an xray to check your bones are in the same spot as the planning ct.  Umm, sure, you better check that - my left hip bone is known for taking a wander up to my rib cage on occasion......

Finally they were happy that I was in the perfect position, and after a reminder to NOT MOVE A MUSCLE AT ALL (but you can keep breathing normally) they left the room and proceeded to zap away.  The radiation machine itself is strange - it's shaped like a UFO and it rotates around your body, stopping every now and then to click click click (i'm going to assume that's the good stuff being zapped into my body) and before I knew it, it was all over.  (it took 2 songs on the radio to be zapped...was nice of them to play music for me!)

One odd thing I noticed - when they were moving me around, I kept feeling 'tickling' around my tattoo marks, but thought nothing of it.  When it was finished, before I was allowed to move, I felt more tickling around my marks, and they were calling out numbers. (don't know what that was about, might need to ask next time).  It wasn't until later that I discovered they had actually drawn more markings on each of my tattoos, I'm guessing to highlight where the little spots are.  So now I have tiny tattoos smaller than a freckle surrounded by GIANT lines pointing to the spot.  And I'm not allowed to scrub them off.  I feel so dirty!

So all in all, the whole thing was less than half an hour, totally painless, easy peasy.  No side effects - apparently that part is a cummulative effect and will take a week or two before I feel like crap.  Something to look forward to.  So that's it, treatment #1 done and dusted.  Same time, same place for #2 on Monday (snow storm in the forecast for Monday, great stuff!)

Learning all about chemo

The time had finally arrived to head back to the city.  Accommodation was the biggest issue.  I had been offered a place to stay, but it was only available for a week here and there.  This would mean still trying to find somewhere else to stay, plus the hassle of packing up and moving during my treatment. After much debate, I decided it was a better option to rent a short term apartment close to the hospital, and not have the hassle and stress of having to move.  Problem solved.

Thankfully this trip to the city was far less eventful than the last trip.  My only hiccup was my GPS refused to work - no idea why, but suddenly my charging port is not working.  So I had to drive into the city "blind".  Which was fine on marked highways. It became more of a challenge once I reached Edmonton and had to navigate through unfamiliar streets to find the apartment we were staying at.  Even though I had travelled into the city many times, I still find the streets confusing, and I rely very heavily on my GPS.  So while I know general layouts, and have a general idea of orientation, getting on and off highways and knowing correct exits - that's what my GPS is for!  But, nonetheless, I made it here safe and sound.

The apartment itself is perfect - lovely location, beautiful views, and a short drive to the hospital.

But enough about that - chemotherapy and how it is going to affect my life.  This sounded like a fun filled day to be had.  First up was a visit to the lab to get some blood work drawn.  I will be getting weekly blood work done prior to chemo, so I'm learning to suck up the fear of needles and get on with it.  I'm also learning to not tell them which is my best vein - i've been finding that as soon as I tell them my perfect vein, they blow it.  So I'm learning to shut up. (not an easy feat for me, as those of you who know me well will know!)  Something new I learned - because they'll be doing so much blood work, plus the IV for the chemo every week, they try to use the little veins, not the big obvious ones, so that way if they lose a vein, you still have plenty of other ones to look at.  So I was most surprised when the technician took blood from the smallest of veins on the outside of my arm.  Cool!  Unfortunately, the next morning, I did have a nasty looking bruise there, so I guess it wasn't such a great poke after all.  Sigh.

Next on the list was a visit with the chemotherapy oncologist.  First up, a trip to the scales - another 2lbs down (woohoo for the cancer diet!) which I was told was not a good thing.  They don't want me to lose any weight during treatment.  Are they serious??  Thankfully my height didn't drop this time too.  Then the nurse wasn't sure if the doctor would want to exam me, so I was told to change into the sexy blue gown - just in case.  Yay.  The nurse this time was brilliant - she actually wanted to hear the answers to the questions she asked, and she took her time to explain things that I was unsure about.  Then it was time for the doctor - again, lovely lovely person.  She was so clear about everything.  She made it very clear what the plan would be and what she expected my side effects to be.

So, the plan. 5 doses of Cisplatin.  She said that the cisplatin works well with the radiation, and the plan is for the chemo to damage the cells enough for the radiation to get in there and blast the crap out of it.  So the chemo helps the radiation work better.  Yep, I'm all for that!  Bring it on.  The side effects - she said first up - you will not lose your hair with this drug.  Thank bloody god.  Ok, so I know if the big scheme of things, a little bit of hair is a small price to pay for saving my life.  But geez, this is my HAIR!  I'm not a vain person - I don't have the supermodel body, I way below average height, I could nit pick all my faults all day long.  But I've always been totally superficial and vain about my hair.  I'm not ready to part with my hair.  So hearing that this is not an issue at all - it was a huge relief. (on the downside, I was kind of actually looking forward to guilting all my family into shaving their heads for support....wonder where I could find a bald cap....hehehe)

So the biggest problem I'm going to have is nausea and vomiting.  Joy.  Of all the bodily functions we've been blessed with - vomiting is my LEAST favourite.  I hate vomit.  I refuse to vomit. Hell, I'll even tell my patients to not vomit in my presence!  I'll tell them to suck it up and hold it for the next shift (and surprisingly, many do try their best! )  Even my children know not to vomit!  So being told I'm going to be spending then next few months in vomit city??  Ugh!  Can I trade this side effect for the hair loss instead?  Thankfully she gave me a prescription for a swag load of anti-puking drugs, which I took directly to the pharmacy to fill!  My drawer is now filled with all the anti-puke drugs a chemo girl could want!

So after that lovely visit, I was then sent off to chemo class.  A fun filled hour learning all about chemo and how to live with the side effects.  Basically, the nurse spent 90 minutes (oops, he went over time, sorry about that....jerk) going through all the information pamphlets that were in our package.  So I didn't learn anything that I couldn't already read for myself.  Sigh.  It was a struggle to stay awake for it really.  The only entertainment was the stupidity of some questions from the others in the group (this is probably a warning sign that I really should not be involved in any group therapy type of program)   At one point, he mentioned the importance of handwashing during chemo, to protect ourselves from bugs, and the importance of using hand sanitizer while out in public.  I won't mention ALL the questions asked - but my all time favourite was one lovely lady who asked if using baby diaper wipes would be a suitable alternative to alcoholic hand sanitizer.  After he said, most likely not, because there is no alcohol in wipes, and the point is to remove germs from your hands, not just 'clean' them, she then went on to argue that they SHOULD be good enough, because they're good enough to use on baby's bum, so why not hands??  The next brilliant question (I suspect it was the same woman) was to do with using digital thermometers (apparently I need to be paranoid about getting any kind of temperature).  

Crazy Lady - how long do i keep the thermometer in my mouth?

Nurse - until it beeps.

CL - But it doesn't beep.

Nurse - well, just follow the directions for your particular thermometer.

CL - well if i had the directions, i wouldn't be asking you!

Nurse - well, most digital thermometers take 15 - 30 seconds.

CL - are you sure?  Isn't it more like 5 minutes?

Nurse (trying so hard to remain calm) - well, you could keep it there for a whole minute to be sure if you're concerned.

Lady - seriously, just go buy a new thermometer!  Geez!!!

Finally, he was done, and we could escape.  By now my head was spinning with information overload, but I still had to go back to the chemo reception and get my written plan for taking my drugs.  So I now have a lovely plan on what drug to take when to minimize the effects of the poisonous crap they'll be loading me up with.  Does it get any more fun than this?

Small perk of the day - there was no parking when we arrived, so i had to park in the adjoining underground parking building (read - expensive parking) which is a delightful $4/hour.  When we came out, the pay machine was out of order, and you could only use credit card to leave the lot.  However the guy working on the machine said if you're paying cash, just call the help button and explain the situation.  So I decided to pay cash - pushed the help button, explained the pay machine was out of order, and he opened the gate and said have a nice day.  Woohoo!  $12 of parking for free.  Thank you, don't mind if i do!  I looked at getting a parking pass - what a rip off.  It is only for the outside parking, not the building, and it doesn't guarantee you a park. So I could pay $100 for a monthly pass, but still have to pay for parking anyway if the parks are all full.  Screw that.  And of course, being in the middle of a major university, plus two other hospitals in the area, parking is a nightmare. Oh well, this is going to become my daily joy  :)

So, one day down.  Several more to go.  Next stop - the beginning of radiation treatment!

A plan at last with a start date!

I was feeling a little bit let down - I had been led to believe that my treatment was going to start straight away when I got to the city. So to be told that no, I had to wait for my plan to be approved and I would be notified of the date at some stage - well, it was a little bit frustrating.  I'm already sick of having my life on hold - everything is in limbo.  I can't work, I feel crappy, I have no energy, and every conversation I have with people revolves around cancer and when am I starting treatment.  Add to that the extra little 'symptoms' I'm now having, basically everything really sucks.

The symptoms you ask?  Oh yeah. This little tumour of mine has decided to make itself known.  It's probably not helped by doctors having a good poke around down there either.  But I now have a period that won't stop with constant cramping.  I hate it. Although I am keeping the drug companies in business with my pill popping - yay tylenol and advil.  This charming tumour likes to sit against my bladder - it must be a lovely little pillow for mr. tumour to rest his head.  Unfortunately, this is also reminiscent of being 9 months pregnant, with that constant need to go to the bathroom, only to discover you actually don't have a full bladder, just a teaspoon worth. Repeat scenario 30 times throughout the day and night.

So to finally get a treatment plan with an actual start date is exciting stuff.  It's definitely time to get rid of this bugger, and get my life back on track.

November 29th is day 1 of radiation.  25 radiation treatments in all.  Tuesdays is now known as Chemo day - I have 5 of them to look forward to.  Now that's a freaky thought - 5 days knowing I'm purposely going to be filling my body with poisonous chemicals with the hope of killing the bad stuff but leaving the good stuff alone. (please don't kill my hair - i love my hair! I promise to stop yanking the grey ones out!)

So i'm excited, nervous, scared....pleased to finally be getting this show on the road. Wait, what?  Excited?  Ok, that's probably a bit sadistic of me.  Who gets excited at the thought of being blasted and zapped on a daily basis?  God I'm weird.

Meeting the radiation oncologist, and a little surprise

So today is the day I finally get to meet with the oncologist and find out my treatment plan. I was a little bit nervous, because this makes it all real now. But I was also just a fraction bit excited (how sadistic is that!) because now I'm going to know exactly what I'm up for.

A few hours before my appointment, I got a phone call from the institute saying they had added an extra appointment to the day - they were going to send me for a planning CT. This is the CT that they use to work out the best pathway to use to zap radiation through my body that will kill off the nasty cancer cells without killing off the good bits that my body will still need (you know, the essential stuff like my bladder and bowels)  I figured this to be good news though - it obviously means that they're planning on getting started with everything.  About bloody time!

So I arrive for my first appointment - off to see the oncologist.  I arrive at the desk, go through the process of saying my name and date of birth, and am then told to go get changed into a gown.  Huh? I thought I was here just for a chat?  Oh no, the doctor will want to examine you too.  Oh yippee.  I can barely wait.  So I got changed into the sexy blue gown (getting sick of this gown) and go back out to the desk.  She has a lovely 3 page questionairre for me.  Oh joy.  The questions started out fine.  Easy stuff like do you have any allergies, no. Are you on any medications, no. blah blah blah.  God I have a boring medical history.  Please write your understanding of why you are here today.  Ummm, because you told me to come here for an appointment? No, wait. That's probably not the answer they're after.  Ummm.....because I need you to cure me? Oh, I know....Because I have CANCER you fools!  Why else would I be here?

I turn the page - the questions get better.  Are you worried about any of the following, yes or no.  Then it lists a long list of 'concerns', like job commitments, financial concerns, family, changes to appearance, changes to sexuality, spiritual concerns, social concerns, treatment etc etc.  So I happily go down the list yes, yes, yes, yes, yes.  Stupid form - of course I have concerns.  Seriously, does anyone get told 'hey, you have cancer' and they go "oh goody, this will be fun, nope, no concerns here, this is going to be a walk in the park".  Then it asks if I want them to place referrals for supports on my behalf.  This amused me somewhat - so if I say yes, I have concerns about changes to sexuality, and then say yes, I want you to put in a referral - just who exactly gets that referral?  Do they have a sex nurse?  I figured I would play it safe and just select no.  No need for referrals here (although meals on wheels might be nice - get out of the cooking for a while!)

No sooner had I finished filling in this form, the nurse came to take me to the exam room.  She told my mother she had to stay behind, the docotor would be examining me, and then she would get called in for the 'talk' part of the consult.  We stop at the scales - apparently I have to get used to this bit, they'll be weighing me constantly.  Great stuff.  What a lovely surprise to see I've lost 10 pounds in the past couple of weeks.  This stress diet is awesome! She also measured me - as I stepped away, she let the scale slide a bit and it went from 156cm to 154cm.  I said hey! It slipped! I'm not that short. She replied I know, I saw that, don't worry, I'll add the cm back.  Right - so now I've lost a cm.  And when you're as short as me, you need every bloody cm you can get!

Then she takes me into the exam room and checks over my form.  Oh, she says.  I see you've answered 'yes' to a lot of concerns.  Are you kidding me?  Who WOULDN'T be concerned about what their life holds over the next few months???  OMG, I really didn't like this nurse and her attitude at all.  How the hell did she get a job in a cancer clinic?  Aren't oncology nurses meant to be kind, caring and compassionate?   She finally leaves the room, saying the doctor will be in in a minute.  And so begins my long wait in a boring little exam room.

The scary exam table - I couldn't help but wonder where the stirrups were.  Maybe it wasn't going to be "that" kind of exam?  Fingers crossed.  So I'm sitting there waiting, waiting....what else can you do when you're bored?  Oh! I know!  How about a lovely selfie in my sexy gown....

Ok, not the most flattering shot, but hey - i'm bored.

Finally the doctor comes in - I'm pretty certain this is her first gig fresh out of medical school, or I'm getting so old that everyone looks like babies.  She is young and perky, and directly to the point.  She says that she will start with examining me, and then discuss what is going to happen from here.  She then starts to give the run down of the scans from yesterday, and before I know it, she's had the entire discussion with me - while my mother is still waiting in the waiting room.  Crap.  Then it's up onto the little table, and oh look!  The stirrups are hidden.  Double crap.  So I assume the position as the doctor has a good feel around of the tumour and how its sitting and feeling and god knows what else.  All I could think of was thank god asians have tiny little fingers.

So here's the plan (the bits I remember of it all).  The scans from the day before confirm that I am Stage 2b.  The tumour doesn't appear to have extended anywhere else, but is pushing against my bladder (yeah, I already kinda figured that) but they can't see any evidence that it has infiltrated the bladder, but that doesn't change the treatment plan anyway.  There was also some evidence on the PET scan that there was some 'minor' activity in a few lymph nodes.  Again, doesn't change anything, but they will keep an eye on it.  She feels its just infectious activity as it didn't show up as active as the cancer cells. I'm just freaking out that my lymph nodes are doing anything at all!

Basically, I have two options - do nothing (yeah, not really an option) or a combined treatment plan of radiation and chemotherapy. Surgery is not an option because the tumour is too big and they can't guarantee clear margins.  So zapping this crap is the only way to go.  What she proposes is a 5 week course of daily external radiation. This will be combined with concurrent chemotherapy over the 5 weeks - I *think* she said weekly chemo, but basically 5 weeks worth of chemo.  After all that is done, I will then get admitted as an inpatient to have an internal rod placed in my uterus (wow, that sounds like a LOT of fun!) and then have 3 days of internal radiation where they basically pump radiation into the rod every hour on the hour.  This means being bed bound for 3 days in an isolated lead lined room, with visitors only able to come in for half an hour at a time.  I can hardly wait.

I cant believe my entire treatment plan is a total of 6 weeks long.  It seems so quick. I can cope with 6 weeks - 6 weeks of crap, a few more weeks of recovery.  Yes, I can totally do this!! (ok, so I'm still a little bit in denial - she did say she strongly recommends at least 3 months off work after treatment to allow my body to heal, but I'll deal with that when I get there....)  The only bit of the whole plan that I wasn't happy about - now that I've agreed to the treatment, the doctor now presents the plan to the ethics board, and I have to wait for them to approve it and to give me a start date. So it will still be 2 or 3 weeks before things get started. This means I will be in the middle of treatment right over christmas.  Merry Christmas to me!

After hearing all this great news, I quickly got changed and headed off to the planning CT appointment.  Once there, its another change into another gown, another form to fill in, another check of my name and date of birth, and it's time to get scanned.  I'm totally freaking out about this - I have heard you get tattood so they can line you up in the machine in the same position every time.  Now I HATE needles.  Really really hate them.  The idea of getting a permanent tattoo on my pale sensitive skin just freaks the crap out of me!  I get positioned on the scanner table, and again they put lovely wedges under my knees to make me comfortable.  Yeah, how comfortable can you be lying there almost naked getting prodded and poked around.  One of the technicians - a guy - is making marks on my skin where they plan to put the tattoos.  I'm doing my usual nervous babbling, and say to him, gee, all this and you didn't get me dinner and a movie first?  He laughed and said maybe next time!  hahaha  Then he tells me they are going to be giving me FOUR tattoos!  WTF??  FOUR???  I'm not prepared for four!  I can barely get my head around 3!!!

I ask him if he's a licensed tattoo artist - I've heard you should always check you're getting marked by a professional.  Turns out yes, he really is.  Great stuff.  I told him I was going to report him to the Better Business Bureau for not asking me for my ID.  And then I had a thought - I said hey, I'm not drunk.  Aren't you meant to be drunk when you get your first tattoo.  Like seriously, I am NOT ready for this!  Then he wiped the area with an alcohol swab - oh great, that's all the alcohol you're going to give me?  Can I suck on one maybe??  He said it would be like a little mosquito bite.  Oh sure - I've lived in Australia man!  They have NASTY mosquitos there!!!!  Then I start to take notice of exactly where he is rubbing the alcohol - the top of each thigh, the centre of my chest (what?  why my chest?) and right in the middle of my hoo-ha.  OMFG!!!!  I'm going to get a pussy tattoo??  Fuuuuuuuuuuuck!!!!!!!

Then zap, zap, zap, zap, all done.  Huh?  Really?  That was it?  It hurts more stabbing myself with a needle when I'm trying to sew on a button!  And now I'm feeling just a little bit ripped off - all that work up and freaking out over nothing?  Really??  And then I see the size of the tattoos - seriously - I have FRECKLES larger than these tattoos. What a bloody let down.

If you look really carefully, you can just make out a black dot near the bottom of the black smudge.  Thats my tattoo!

So now its back to waiting - hopefully they will phone sooner rather than later with my start date so I can get started on getting rid of this crap out of my body and get my life back on track!  Oh, and I got disapproving looks for not having attended the newcomers club yet.  Oh please.  I still have to have an appointment with the chemotherapy oncologist to discuss that part of my treatment, and I get assigned my very own radiation nurse - hope she's a nice one!  So I'm guessing these next few weeks will go quickly.  Now to work on getting my car back from the mechanics - they're hoping by the weekend or monday. Can't believe how slow they are!

Radioactive girl

The day had finally arrived - time to book myself into the Cross Cancer Institute.  It was a nerve racking experience walking into the building I will be probably calling my local hangout over the next god knows how many months.  First up - getting checked in and getting my cancer card.

Because the majority of the appointments are all on an outpatient basis, everyone gets a card with all your information on it.  This needs to be presented at every visit.  As well as the card, you also need to spell your last name at every stop you make and say your date of birth.  Every. Single. Time.  Thank god I have a short last name!

Once I had my card, I was directed to the first stop of the morning - the MRI.  I changed into my super sexy hospital gown (gag) and waited to be called.  With not more than a few minutes to sit and freak out, I was called to head to the MRI room.  Now I have seen someone else get an MRI - once - and I can't really remember too much about it.  So this was all completely foreign to me.  The lady that got me sent up was very nice,, and she did her best to put me at ease.  

I was placed onto the little tiny 'table', with lovely wedges under my knees to make me comfortable.  I then had covers put over me (she didn't really explain what they were for) but they basically strapped me into place so I couldn't move.  I had one over my abdomen, and one over my chest.  They were heavy, and I couldn't help but think it was a good thing I'm not claustraphobic!  Then she put some headphones over my ears.  I asked if I could pick the music?  She looked rather confused and said no, they were to protect my ears because it gets a little bit noisy.  Bummer.

The MRI itself was very strange.  It took about half an hour to do the scanning.  It was definitely very noisy, it sounded like jackhammers going off and on, and every now and then I would get a 'warm' feeling, presumably something to do with the magnets?  Finally it was all over and time to head to the next scan.

Next up was the PET scan. This is basically like a CT scan but in 3D.  It helps them see exactly how the tumour is positioned in comparison to all the other organs, and they use this to work out the most appropriate treatment plan.  Part of getting this scan involves being injected with a radioactive sugar, and drinking a litre of contrast.  Fun.

First stop was the IV chair. After yet again saying my last name and date of birth, it was time to get a needle.  Oh lucky me - I get the dumb ass nurse who MISSED my vein!  I have BEAUTIFUL veins!!  Seriously, they're so big and bouncy, not even a blind man with tremors could miss it.  But this nurse did.  And for anyone who knows IV's - she missed a giant ACF with a 22G needle.  Like really?  Thankfully she got it her second go (hey, i know, everyone has a bad day, but OMG - I NEED these veins!) and then it was time to head to the next 'station'.

I got seated in a lovely comfy chair with my feet up and a nice warm blanket.  I was told that once they inject the sugar, it needs to go to certain areas of the body - namely anything cancer looking - so I'm not allowed to move around (because that makes it go into the muscles) and to not think or stimulate my brain in any way (that causes the radioactive sugar to enter my brain and they don't want that). Thanks for telling me that - now i'll think about how i'm not allowed to think about anything!  I was injected with 10ml of sugar, which was completely painless.  And then I was passed a one litre container of contrast to drink over the next hour while the sugar roams around my body.

Now oral CT contrast.  Wow.  I never realised how much torture I have placed on my patients over the years.  That stuff is just plain NASTY!!  And I had to drink a litre of the bloody stuff!!!  It basically tasted like nasty tap water.  Which is fine if you don't care what tap water tastes like, but me?  I'm a total water snob.  I like my water to taste nice!  So here I am, on my comfy chair, taking a sip of this contrast and gagging.  Another sip, gag. Another sip, gag. I swear it was like a never ending cup - no matter how many sips I took, the level never seemed to get any lower.  Finally, I managed to make my way to the bottom of it, just as the guy came back to take me to the scanner.

The scan itself was much like getting a CT scan done.  Up on the tiny table again, moving in and out of the donut ring, and done.  Finally it was time to get changed back into normal clothes and head back to the apartment.

Round two tomorrow - time to hear the verdict from the oncologist what I'm up for!

Off to the big city

Friday night saw the arrival of my mother from New Zealand. She had decided she wanted to be here with me and help me get through this initial round of appointments and treatment, rather than facing it all alone. It's a bitter sweet visit - as much as I love having her here and am enjoying showing her our new life here in Canada, it is always in the background that she is here because I'm sick.

As well as my mother, Friday night also graced us with the first snowfall of the season! We were all very excited, mom not so much. I'm sure she thinks we are nuts for actually enjoying this weather! :)

Before we knew it, Tuesday had arrived and it was time to load the car up and head to the city. After a couple of delays to get the keys for the place we would be staying in, food and drink for the long 5 hour drive, and a full tank of gas, it was time to hit the road.

Now the drive to edmonton is loooooong. 5 hours of straight roads, maniac drivers and lots of big trucks.  Thankfully the roads had cleared from the lovely dumping of snow over the weekend, so I didn't have to deal with *that* too!  So we're cruising along, chatting away when all of a sudden my car starts beeping at me and my engine overheat warning comes on. I pull over and discover I have not a single drop of coolant left, which is strange because there was some there the week before when I checked! Thank god for AMA membership - a quick call to them to come rescue me, with a promise that someone would be there within the hour.

So here we are, 2 hours out of town, on the side of the highway, waiting to be rescued. Something I hadn't considered before, it gets really really cold sitting in a car on the side of the highway, surrounded by snow, and unable to run the engine to keep warm! I did ponder at one pint - why can't they make cars out of sheepskin instead of metal? It would be much more cozier when you've broken down!

Finally, two hours later (I guess the AMA has a different concept of time to us normal stranded people) the tow truck arrived - literally my knight in shining armour, of sorts.  We debated what to do from here. I thought there is no point dropping me at the local gas station to buy coolant - I had obviously lost my coolant for a reason, so I'd likely just break down again. I needed it checked by a mechanic. I also needed to be in edmonton, so might as well tow me directly there. So he loaded the car up, and we were on our way. Great, I'll really be arriving in style now!

The tow guy - mike - asked if we would mind stopping at the next town so he could buy some food. We said that would be fine - was busting for the toilet by this stage anyway. So we stopped for a   quick stop, and about 20 minutes later, we were back on the road again. Then Mike dropped the next bombshell. He needed to fill the truck with gas, and for that he had to go back to base. So now we were detouring through Athabasca. We finally get to the fuelling stop, and the drama starts. Mike can't find his wallet. He hunts through the truck, through his bag, his coat, any place he could think of. Nothing, nada, zilch, zippo. There is no wallet. He calls his boss, and arranges to get a spare fuel card. Then he calls the place we stopped at - thankfully his wallet is there, he must have dropped it in his hurry. Crisis over. So now we head back to the tow truck company to collect the fuel card, back to the fuelling stop to fill the truck, and hallelujah, we are finally back on the road to Edmonton! Hopefully we should get into town by 8pm, so it's all good.

Mom and I had to laugh when we were driving into the truck yard - it's off a back deserted road, it's dark, and there is no one else around. It was like a scene from a cheesy movie - had we just been abducted and naively trusted a serial killer? Because really, how do this many things go wrong to set it up so nicely to lure us into a deserted area? Hahahaha. Thankfully, he was actually a nice guy who just wanted a fuel card :)

Now blow me down if we didn't get 10 minutes down the road when the truck starts driving funny. So he stops to check it out - the trucks lug nuts are loose. I have no idea what this means, but it seemed to upset poor Mike, who now had to call his boss again! So we are now sitting on the side of the road waiting for some special tool to arrive. Thank god we are only 10 minutes out! Ah, no, scrap that. It still took over half an hour for the guy to arrive with the special tool. So they're fussing around, scratching their heads a bit, and then he breaks the news. The truck is stuffed and we will have to change tow trucks. What?????? Are you freaking kidding me?

So it's back to the truck yard to offload the car onto another truck.

After a bit of stuffing around, we finally had the car loaded onto the new truck and we were on our way!  Wait, no.  Scrap that.  Back to the fuelling stop to fill up - again - and then we were on our way!  Long story short, we spent the rest of the night in an over hot truck (i think he thought we would be cold because we weren't used to Alberta winters yet) listening to loud country music.  My mother and I were pretty cranky by the time we *finally* reached Edmonton!  We found the car dealership to off load the car, and then the tow truck guy was kind enough to drive us to the place we were going to be staying at.  We finally got to our final destination just on midnight.  It had taken just over 12 hours to get here - crazy!

I had been booked for several tests the next day - and I was to be fasting from midnight, but I hadn't eaten since around 11am.  So I crossed my fingers that I wouldn't get into trouble for eating just past midnight, and scoffed down a bowl of rice and soup.   Then it was into bed to get a few hours sleep before my fun filled day of getting scanned.

I tell ya - after such a run of bad luck today, surely things can only get better from here!  

The laws of gravity

So after such a great day...well, we all know the laws of gravity. What comes up must come down. And boy did it come crashing down.

After many years of badgering, my eldest daughter finally decided she was ready to get her drivers license! Woohoo.  Three days after deciding this, she was ready to sit the theory exam - and she PASSED!!!!  Now it's time to set her loose in my car - EEK!

So last night, we found an empty parking lot, and I finally got to teach my daughter how to drive a car. We spent ages going around in circles, so E could learn how to use the brake without giving me whiplash and the accelerator without lurching forward. The advantage of using a parking lot is she also got to practice pulling in and out of a parking space.  All in all, it was a great time, and maybe with a bit more practice I will be ready to let her go on the road with real traffic!

Fast forward to 2am, and I'm suddenly wide awake again. I hate it when that happens.  And of course, my mind started ticking over and over, and it hit me - what if I don't get a chance to teach my other daughter to drive.  She is only a few months away from being able to get her learners permit too.  What if I don't get to experience the joy of watching her behind the wheel of the car for the first time, or help her create the same memories of hysterical laughter that I got with my mother, and E got with me.  It was upsetting me so much that I seriously contemplated waking her up in the middle of the night to take her out for her first lesson, right then and there.

The enormity of this whole situation is mind boggling.  It's not like a quick operation and I'll be fixed, or an illness that will take a week or two to get over.  This is going to effect me AND my entire family for years!  And yes, it will make us all the better for it, and yes, we'll all be stronger because of it, but bloody hell.  I was HAPPY with the way we were and the life we had!

And before I knew it, morning was here and everyone was getting up to start their day.  Time to put on my happy face again and get through another day.  Only 4 more days until I head to the city and finally get started on fighting this crap out of me.

feeling positive today

Every month we have a Managers meeting at 8am.  It's code for 'lets go out for breakfast' and a good excuse to get together socially and have a lazy start to the day.  (There is another 'meeting' for managers only called TGIF which involves leaving work early and heading to a bar for a few drinks.  It's fun being a manager!)

This morning I was reminded that it was our usual breakfast get-together, and I was still part of the group despite being off work at the moment. So I headed out and joined everyone for a yummy plate of eggs benedict. Yum Yum!  It was great to actually have an excuse to be out of the house, and to spend time with a group of women who I already consider to be good friends, and NOT spend the hour discussing me and my cancer.  Listening to all the fun and games going on at work made me realize how much I'm enjoying my new job, and how much I miss being there.  It just makes me even more determined to get through this as quickly as I can so I can get back to it!

After breakfast, I headed into work - I had a few chores I needed to do before I head to the city, and some things to pick up.  Again, great to catch up with all the staff and feel a part of everything, even for just a brief moment. Of course, one thing led to another, and before I knew it I was checking emails, sorting out problems, printing work off, and problem solving issues!  It is really hard to switch off my work brain!  I had never realized I had such issues with control and work - the manager covering for me laughed and said she had me pegged as a workaholic from day one! I have never considered myself a workaholic before, but yeah, I'm definitely having issues just relaxing and doing something that has nothing to do with work, nursing, maternity or a various combination of all three!

My working fun was soon over when my ob/gyn appeared on the floor and told me I should be at home resting!  So with my tail between my legs, I locked my door and headed home to 'relax'.  :)

My great day continued with....

 

......my last dose of antibiotics!  Woohoo!!  Hopefully now I can get rid of this revolting metallic taste in my mouth. I am now drug free - at least for the next week until my treatment starts!

I want to thank everyone for their positive thoughts and comments - it means a lot to me that I have so many people watching out for me through all of this! 

The apointments come rolling in

Today started off with a call from the Cancer Institute, informing me that they had made a couple of appointments for me.  First up, an MRI at 7.30am, followed by a PET scan at 8.30am.  The PET scan is a 3D imaging scan, so they can see exactly how the tumour is sitting inside of me, and work out the best pathway to zap the bugger.  This scan also involves me being shot up with radioactive sugar, so I get to be isolated for the 2 hours that it will take to do the scan. No support person, no phone, no ipad, no books, just me and my thoughts. Are they nuts??? Me and my thoughts, alone in a room - never a good combination.....

Then the kicker - I have to be fasting for the MRI from midnight, but I need to come to the appointment well hydrated.  What do they expect me to do? Give myself IV fluids all night?  HAHAHAHAHAHA

So now I have to head to the city a day earlier than expected.  But am pleased everything is falling into place and things are starting to happen now.  I then had a phone call from the cancer navigator - she gets told of my appointments and gets a copy of any consults too, so she called to see if I had any questions or worries.  She feels certain that they will start the treatment plan straight away - either the Friday or following Monday - it's just a matter of me agreeing to whichever treatment plan they decide upon.  I guess I'll know for sure after my appointment next week!

All in all, its been a good day. I'm feeling more positive today knowing that I'm getting closer to having more answers.  I did have a brief "moment" when I was in the bathroom, tidying up my eyebrows.  As I'm plucking away, I couldn't help but wonder if it was even worth keeping them tidy. And then, as I spotted a grey hair sprouted amongst the blondes, I was reaching up to tug it out, and thought "what the hell is wrong with me?"  I'm paranoid about losing my hair, and yet I stand in front of the mirror plucking out all the 'unworthy' ones.  How sadastic am I?  :)

The emotional rollercoaster begins

I've enjoyed the small reprieve I've been given, and am enjoying the time home with the girls. It's giving me a chance to get things sorted out before I head into the city to begin my treatment.  It's also made it easy to just 'forget' anything is going on. As they say, life goes on. The bills still need to be paid, the housework still needs to be done, the cupboards still need to be filled with groceries.

But every now and then, it just hits me. It might be a comment on facebook, or replying to an email from a well-wisher. But these moments are brief.  My eyes might leak a couple of tears, I wipe them away, and I carry on. 

So Saturday night was a bit of a surprise for me.  Everyone was in bed, the house was quiet, and I was lying in bed reading.  I swear my biopsy results were just taunting me to read them, begging me to open the packet and read it all for myself in black and white.  So I did.  I read my CT report. I read my OR report.  I read my biopsy results.  And I cried. Seeing my life, seeing who I am, everything about me - condensed into a few paragraphs of medical mumbo-jumbo - this is now who I've become. Nothing about being a mother, having children to care for, a career that is flourishing, a life that I'm creating for us all.  Just 3 words to sum up the 'new' me - Squamous Cell Carcinoma.

There were a few other words in there that I didn't understand, so I had to google them. Which led me to pages and pages of more information than I wanted to know. Which led to other people's stories. Which led to video blogs of similar situations as my own. Which led to a very very long night.

Nurses often joke about those people who call for advice or come into the ER, and the first thing they say is "I was on the internet and....."  Well, I have become that person.  I just can't help it.  I have to know everything NOW.  I want to know what my treatment plan is, how long it will take, how sick am I going to be, will it hurt?  But of course, when you start googling for answers, sometimes you find more than you wanted to know.  And the amount of information that is contradictory is overwhelming.  I've been told my survival rate is around 65%.  Which is depressing enough.  But then I see survival rates as high as 78%! Woohoo!  I'll totally take that extra 13% odd in my favour!

But then I'm on another page and see that the survival rate is 56%.  And I panic. That gives me a 50/50 chance of beating this crap. I need better odds than that.  I have too much to live for, too many things I need to do.  I'm not ready to die.  Not yet. Not like this.  And I think of my kids, I can't leave them alone, they still need me! 

It's 3 in the morning, and I'm crying, sobbing into my pillow, and I'm scared. And my thoughts are just insane, totally irrational.  I keep getting told that it is my attitude and positivity that are going to get me through. But I keep thinking, what if God totally sees through me and knows I'm totally faking it to keep everyone else happy? What if he says "good try, but you never really were that good at acting" and takes me anyway. Or my favourite - God only gives you what you can handle.  Well guess what?  I really don't WANT to handle this! I'm sick of God/Life/The Universe throwing things at me. I'm sick of having to cope with everything. I'm sick of having to deal with shit situations. I'm sick of having to be the strong one all the time.

And I'm now thinking maybe I *should* have taken the doctors offer of ativan and sleeping tablets...

Discharged with an appointment date

The one joy of  being a patient on pass is that I don't have to buy my own antibiotics, the hospital still has to supply them for me.  Woohoo!  The downside to this, I have to report to the hospital every day to get another 24 hours worth of drugs.  Sigh.  Wednesday, it took an hour to get my drugs - at first my allocated nurse ignored me, and after 40 minutes I asked for her to be called again, and she confessed she didn't realize she was my nurse, which is why she didn't come back originally.  What an idiot. 

Thursday, I was prepared to be there an hour again - just to be on the safe side. But this time I had the nurse in charge on my case, trying to sort out what was happening with my transfer to the city.  I was just about to leave, with my daily supply in my hot little hands, when a phone call from the institute came through.  They had decided to not bring me as an inpatient, and had an appointment time to show up as an outpatient - November 14th.  Cue panic attack....

I waited back in my room for my doctor to come up - he said he'd be 5 minutes.  Now as a nurse, I know full well that 5 minutes means "I'll be there before I go to bed tonight".  As a patient, for some reason I honestly expected that 5 minutes meant "I'm actually just coming down the hall as we speak".  Silly me....

He finally showed up an hour and half later, and was a god send dealing with my neurotic crisis.  He assured me that waiting another 2 weeks to be seen wasn't going to change my prognosis, my cancer would not grow in 2 weeks, in fact, 2 weeks is pretty quick compared to how long some people have to wait to be seen!  He then proceeded to tell me that the best thing is to go home and rest - I was going to need all the energy I could get coming up. And no, I could NOT come back to work. Just rest, rest, rest and DON'T stress, because stress hormones feed the cancer cells.  Thanks - now i'll be stressing about trying not to stress!  He then changed my antibiotics, and discharged me, and sent me on my way.  As a bonus prize - he also gave me his cell phone number and made me promise to call day or night with any questions or concerns.

Oh - odd thing.  When I got to the surgery unit, I was admiring some lovely flowers sitting on the desk. The unit clerk said "They're yours", and i said 'oh no, i was just looking at them'.  She replied, 'no, i meant they are for you - someone sent them for you'.  Huh??  So I checked out the card - it was some local church saying they were praying for me, and thinking of me at this time.  HUH???  Who are they? And how did they hear about my problems? This place is just too weird.

I loved the flowers though - but between my allergies and my daughters allergies, I kindly donated them to the nursing staff.

And so now, the waiting begins...roll on the 14th!

breaking free!

Tuesday was my last day of IV antibiotics. Thank god.  I think breakfast was my hint that I had outstayed my welcome....

Toast that bends?  yum yum.  Served with bran flakes and cranberry juice.  What am I?  80?  Geez.

After my pathetic breakfast, I cleaned up my office (when did i become such a workaholic) and handed over the reins to the manager covering for me.  I'm not sure she was too impressed with the 5 pages of notes I had written so she knew where i was up to with various tasks and projects!

I got dragged out of the hospital for lunch - real food! - with a couple of work colleagues. Unfortunately, I still had the revolting metal taste in my mouth, so I could barely get through half my meal.  Then it was back to my room to get my last dose of IV antibiotics, and to be set free from the needles!

Then it was home on pass to wait for the phone call that the city was ready for me.

Oh - funny story.  Total blonde moment and god, I wish I had gotten a photo!  So I had two IV's at one point - one for the CT in my right ACF with enough tape all over it, that I'm sure I could have wrapped a few years worth of Christmas presents with it! Anyway, when I had the giant CT IV removed, I had a rash on my arm where a chunk of the tape was. It's not unusual for my skin to be very red after getting tape removed, but it usually disappears after a few hours.  Not this time - it developed into a very angry looking rash, almost to the point of looking like the skin was breaking down.  Great - all I need.  To develop a sensitivity to the bloody tape at the START of my treatment.

So I was talking to my HR advisor, and I told her about my arm, and we were having a bit of a laugh how I was having a run of bad luck.  And I said, I should totally send you a photo of how bad it looks.  And as I was looking at it, I thought something didn't look right.  So I went back to my room to get my antibiotics, and I asked my nurse if she had some spare alcohol swabs on her.  She passed a couple over, looking a bit confused.

I told her - this is either going to be really funny, or I'm about to totally scream.  And I proceed to wipe the alcohol swab over my 'allergic reaction'.  Thankfully I was right - I proceeded to clean my allergic reaction off my skin.  The nurse is looking at me like I had lost it!  I said what happens when you take tape off?  Oh! You're left with sticky skin right?  And what colour sweater am I wearing??   Oh look, its red - just like my 'rash'  HAHAHAHAHAHA  God, I'm such a dork!  And thankfully, still allergy free  :)

Club Med for cancer patients

After a 'yummy' breakfast of toast and egg (again) and lumpy oatmeal, it was time to start my day. First up - the cancer patient navigator.  It is her job to tell me all about my options, funding that might be available, and what i can expect over the coming weeks and months.  She was awesome.  Knew exactly what to say, allowed me to ask any burning questions (my hair!  will i lose my hair!) and helped me put quite a few things in perspective.

Things in Canada are weird. Of course, I've never experienced something like this before, so who knows - it might not be different anywhere else.  Basically, because I live in a remote location, it is up to me to arrange my own transport and my own accommodation to stay in the city to receive treatment.  This alone is stressing me out.  We are coming into winter, and this will be our first 'northern' winter, so I have no idea how bad the roads are going to be, and the thought of a 5 hour drive in a snow storm to get treatment that will safe my life really freaks me out.  And because I don't know my treatment plan yet, it's hard to even arrange anything. I don't know if I will be there for a week at a time, longer, shorter, months, ARGH!

I looked through the accommodation list - that was depressing too.  Most of the 'affordable' places were around $20 - $50/night and was a private room with a shared bathroom, or a guesthouse with shared bathroom, or a bed and breakfast (with shared bathroom).  The thought of going through this in a strangers home is enough to freak me out.  And the thought of sharing a bathroom with other cancer patients - really?  I've heard about the side effects - diarrhea and vomiting - can you imagine 2 (or more) all trying to get to the bathroom at the same time for the same reason!!

Basically - cancer is a pretty inconvenient thing to have when you don't live in a major city with treatment available.

The cancer navigator finished up by giving me my goodie bag.  I just looked at her - I could see why she kept it until the end.  I'm not sure if there IS a tactful way to give a 'gift' like this, all I can say is it made me feel MUCH worse than I already did.  It was like someone was saying "Congratulations!!!  You have cancer!!"  But hey - i now have a handy dandy notebook for all my questions, a drink bottle to keep me hydrated while i'm puking my guts out and a handy tote to carry it all around.

Now that I had my goodie bag - time to read the stuff.  First up - I thought it would be good to read the patient guide for the Cross Cancer Institute. Might as well learn about the place they're sending me to!  I TRIED to stay upbeat and positive, I really did! But this 'handy guide' reads like it's trying to sell a vacation to Club Med!!  There is a convenient wig shop on site - you're encouraged to visit before starting treatment so they can help match your wig to your hair before it all falls out.  Fun.  There is Art Therapy classes - something to help you deal with your emotions through art.  Yeah - with my lack of artistic ability, I will most likely get referred to a psychiatrist when they get concerned about what sort of emotion i'm trying to get out!  There is even a friggen choir!  I kid you not!  A CANCER CHOIR!!!!  I can just see it - a bunch of bloated baldies sing, puke, sing, puke - i wonder if they supply the buckets.  By the time I got to the page about the NEWCOMERS GROUP!!!!!  I had had enough.  I am still too pissed off to finish reading the book.  I know there are people out there that probably need all that support group stuff, and need all those extra things.  And hey, I might actually be one of those people.  But this is all still too fresh and new and i'm not sure i'm ready to be part of the 'cancer club' yet.

After lunch - a very dry piece of chicken, good thing i still have no appetite. thank you antibiotics! - I had a visit from my ob/gyn with the results from my biopsy.  I keep calling it an autopsy, not sure why.  I should know better!  Anyway, he said it shows NO lymph node involvement (thank bloody god!) and it is a medium differentiated tumour, sitting more towards the high differentiated rather than the poor.  It is a squamous cell carcinoma - just an ordinary, everyday, average run of the mill good ol' cancer.  So all in all, it should respond well to treatment.  I said to him - i have no idea what language you're talking, but this is the first time you've smiled since thursday, so i'm going to assume its all good news.  And yes, he said it was very good news (although i still reckon good news would be 'oops! we made a mistake!) So now it is a matter of waiting to transfer to the city to meet the team that is going to cure me.

So after that great news, the navigator came back to see if i had any more questions.  I told her i hated the bag, i hated the book, and i was generally in a pissed off mood and i wasn't ready to join the cancer club. she laughed, and told me to let it out, i was entitled to be pissed off, angry, annoyed.  Then, the light bulb moment - she explained that I have had 4 days to come to terms with all of this. Most people have an appointment with their doctor, then they get called back with the results, then booked into hospital for the biopsy, which generally takes a week to get a result back and THEN they get an appointment in the city a few weeks later. These people have at least 4 WEEKS to get their head around what's going on.  So just hearing that helped make a bit of sense of the rollercoaster emotions i'm having at the moment.

I still don't want to join cancer club though....