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!