What's the first sign of madness?........ Suggs walking up your driveway........!!!

I've been very busy at work this week, and actually feeling relatively good too. I kind if wish I'd felt this good last week, but hey.... shouldn't complain. And so.... with feelings of normalcy has come 10 hour days at work. It's been just like the old days !!! .and I've kind of enjoyed it .. oh hello Suggs :-) !!

I had my Dr's appointment today, he's going away on Saturday to UK for 4 weeks so I'll be going it alone until he gets back. But the results from my bloods were going well still. This month I'm at Kappa 144 mg/l (down from 175mg/l last visit) So pretty good... still dropping. We asked him about what level it needs to be at before starting the stem cell replacement, he said that it didn't need to be at any particular level, just consistently dropping. Which it is. I think he forgot to send through the referral to the Stem Cell Dr as he didn't have a copy of it, and asked me to fax through the referral letter he gave to me so he could follow up.... Dr's !!! He is still thinking only a couple of months away until I start that. All our other questions were answered and I got my new scripts for more chemo and my next appointment booked for Zometa (eeuuww) I told him about my shakes and really bad chemically druggy feelings and he has told me to drop the amount of Dexamethsone that I'm taking. I was concerned that if I started taking less then the chemo won't be as effective, but he assured me that there have been good results from other people taking these amounts. So now I only have to have five Dexa's on the days I have it (which is days 1-4 & 12-15) I see him again on 24th April ......

I chatted to my bridesmaid in Dubai today - she put a big smile on my face, even though it was only a quick chat. Hopefully we'll be able to Skype later in the week and catch up. We may even discuss some wedding stuff !! I've been thinking that Dirk & I may have to start looking for wedding venues as that really is going to be the hardest thing to book. So a trip down to Margaret River may be in order :-)
Cricket finishes this weekend - and I won't lie to you, I am just a tiny bit happy about it !!! We get our weekends back and can do stuff....  like go down south for a weekend maybe. I've asked Nickers to look out for any dresses she might like. As I have absolutely no idea what bridesmaids might want to wear. Not even the colour scheme..... maybe a Skype call will be a good idea !!! Or maybe I should get a wedding planner... hmmm......

This weekend is going to be all about cricket finals. Hopefully there'll be a few of the wags down at the club. And hopefully there'll be some champers organised for us all. It goes over Saturday & Sunday so I'm thinking Sunday will be the day for me. Saturday I'm hoping to go for a facial / massage / pedicure somewhere.... if I can get in at late notice. I'll have to see if I can find somewhere nice. And then I think a little lie in the sun will be in order. It's definitely beginning to cool down now. When I tell you the temp... you people in the colder climates are going to scoff at me..... but Perth people know what I'm saying !! Today was only 26C !! thats cooling down. Sat & Sun are looking to only be 24C & 25C - that's almost jeans and jumper weather !! brrrrrr........

I found my old diary the other day - written every day from 1987 to 1989..... this day in '87 my best friend had to have her dog put down :-( very sad (Ser that was Copper) and on this day in '88 I was on a beauty therapy trip to Blackpool !! We all went there to watch hair competitions (yep I really did) but afterwards when it was time to leave, we had to leave without two of the girls as they didn't come back to the bus.... (Sam & Sioban) haha .... for those of you that know Sammy, no surprises there !!! Hilarious. I think they might have nipped for a quick drink and then got lost trying to find the bus !! They got the last train back and got in at 2:30am !!! those were the days...... there is some VERY juicy stuff in this diary.... I might share some more..... but then I may have to kill you !! <joke>

Well seeing as it is now 1:50am, I think I might try and get some shut eye..... we got our new chairs today for the new table - I think they look fab....

As you slide down the banister of life, may the splinters never point in the wrong direction........

and so to remember everything I'd just written over the past two days..... I was clicking "save" but it obviously wasn't saving !!! grrrrr.... I lost the lot !!

I started with the birthday - Thursday - I went to work and managed to get through morning tea of sausage rolls, tim tams and cake.... then went out for a nice quiet lunch with my friend, caught up on a little more work then made it home where I crashed out on the couch and slept. Dirk was at cricket but came home early with a pizza for tea. He chose a beautiful pancetta & blue cheese one, which ordinarily I would have found yummy, but at the time all I could think of was salt & heartburn !! So what did he do? He went straight back to the pizza shop and bought me a different one.... even knowing I'd only have one slice !! bless him :-) ...... a little while later, birthday was over and I went to bed.... It hadn't been the best day, but not much you can do about that. 

Friday was slightly better (feeling wise) I trundled off to work again. Mornings these days are a real struggle. I am so totally wiped out in the mornings. It takes me a good hour to fully wake up. My eyes are puffy and my body feels sluggish as well as my back aching and tight. But I managed it in by about 9:30am and got straight into the day. I was determined not to feel crap. I had dinner to look forward to in the evening. I figure that sometimes you can fool your body into believing that you feel great.... if you keep telling yourself enough you start to believe it !!

Balthazar

Balthazar was fabulous.... great company, great food and great evening. I have to rave about the food as it was absolutely exquisite.... Dirk had fillet steak that cut like soft butter, Bec & Ben had the Duck and I had Pork with black pudding and scallops.... just divine !! Ben & I shared a beautiful bottle of Gaja - Sito Moresco Langhe which was just a fab as the food.... mmmmm.... 

If anyone is looking for somewhere special to go to I would highly recommend Balthazar - we loved it. 

The Pork

The Duck

The Steak

Saturday was Day8 of Cycle 3 which means drug day <groan>.... 10 X Cycloblastin. (as well as the daily normal + daily vitamins) I did what I usually do on a drug day... hit the shops !! It's easier than sitting at home waiting for the effects to kick in. If I'm mindlessly wandering around I don't tend to feel quite as much intensity as they take hold. And I can forget about everything and just meander around without having to talk or think about anything. I managed to find some bargains for Dirk from FCUK & Country Road which were very well received, and found a couple of bargains for myself. But.... I have one problem that I'd like to share with you all...... WHY do girls wear racer back tops and normal bra's?? Hello.... has anyone told them?  The bra straps look ridiculous !! If you are wearing a racer back, then get a bra that has the same straps or wear a strapless bra.... I saw so many girls with this look - and it looks crap !! Now I realise that I am not the worlds biggest fashionista .... BUT even I know that you need to glance at your rear view before you leave the house. I cannot believe how many girls don't know this rookie rule. There are exceptions to the rule  - like in the gym - BUT not in a shopping centre when clearly you have not been near a gym in decades..... I had a second issue yesterday too, but cannot remember what it was now.... I've been wracking my brain, but it escapes me..... I'll let you know when I remember!! 

The rest of my Saturday was once again spent sleeping before Dirk & I hit the kitchen and whipped up a little Goulash and Nockerl (Hungarian dumplings) in the Thermomix.... delicious !! I also baked a apricot and apple crumble and custard for dessert as Dirk had been harping on about one (well had asked once... heh heh).

And so to Sunday..... 11am I woke up this morning !! Sleep really is my best friend at the moment. The nightly Thalidomide really wipes me out. It takes about an hour to take hold (after taking it) and approx 15-20 hours before I feel like I'm awake. Which doesn't leave too many hours in between.... 

We went to watch South Perth at the cricket today - three teams were in the semi's and now there are two in the finals next week. Hopefully at least one of them will win a flag.... they have to !!

I have bloods and Dr Ben this week. Last appointment until May as he's going away for April. Hopefully we'll see more good results. I have more Zometa to look forward to this month (Not!) and an appointment with a Dr from Royal Perth Hospital about the stem cell replacement. I can't wait until all this is over. I'm sure my mum feels the same..... her chemo looks like being bought forward as there's been some changes for her. I just hope it all goes ok.... I'm here mum for any questions or just to offload or chat :-)

We can live without religion and meditation, but we cannot survive without human affection..... Dalai Lama

Today is day 46 of chemo already......I've been trying so hard this week to be more ......... more what? relaxed, less bitchy, less tetchy? all of the above I suppose.... It's bloody hard sometimes. My body says one thing and my mind says another. Most of the time I just fly off the handle and say things without thinking - so this is what I've been working on !! The shakes, jitters, tiredness, sluggishness and complete malaise continue to plague my days and nights. This is the only thing that is the constant reminder of what is going on.... and there's no escape from it. Mostly I try to forget about it, but by the end of each day, I'm drained and dreading the thought of taking another pill. Because then the cycle starts all over again..... I really don't know how anyone could do this alone.... I am so lucky to have the support around me in Dirk and my friends.

I have pretty much lost most of my taste buds now.... so food or rather the satisfaction of tasting food, is becoming harder to reach. I taste initially, then as quick as the taste hits my mouth it is gone again. Now for someone that eats because they love the taste of food and not because I'll die if I don't eat, this is major for me.  It's getting harder and harder to find the right thing to eat. Nothing that used to satisfy does the job any more. So I'm looking to new tastes and foods for inspiration.... as yet haven't found it though !! I see things on the food channel and I think I might like them, but once I've tried to recreate them I can't tell if they were any good or not. At the end of a meal I have to ask Dirk if it tasted any good. A clean plate usually tells the story that it was pretty good..... at least someone is getting to enjoy it !!

Our little Maverick has gone to get his nuts chopped off today (ouch) so for the next 10 days we'll have a 29kg puppy loose in the house with a bucket on his head !!! something to look forward to !! I imagine there'll be big gouges of plaster taken out of walls, knocked off displays and accidental breakages as he leaves a path of destruction wherever he travels. But we love him so all will be OK.....

It's now Wednesday evening and Dirk has just walked in with my birthday pressie...... and tadaaaaa !!!

This is it !!! a new Mac Book Air :-) awesome.... I can now blog away without having to worry about a big laptop on my knees and without the hassle of using the iPad which doesn't type well and won't save my blogs easily. i LOVE it !!! fanTASTic !! The boy just keeps getting better and better !!! I think he was more excited about giving it to me. I was happy to wait until tomorrow, he's been trying to give me the present since yesterday !! hee her.

Birthday tomorrow too !! A day at the office, I will probably have to supply the staff with birthday cake and sausage rolls for morning tea..... maybe a little lunch time catch up and a quiet evening. We are going out to celebrate on Friday night, once the working week is over and we can relax without the "school night" feeling hanging over our heads. I'm looking forward to our dinner.

Saturday is cricket again.... and Sunday too .... it's finals time, so nearly over.... Once over we are going to have an engagement party at home. I'm thinking a nice, elegant little champagne / cocktail evening at sunset. Our friends, some choice nibbles and lots of bubbles.... hopefully before all the warm weather goes away. Maybe over Easter.... we'll see.

Maverick is now home. He's a little more quiet tonight... probably a little sore (poor fella) We haven't had to put the bucket on yet. He's been too droopy. But I guess tomorrow will be the day when he's more.... inquisitive as to what's been taken away !! Hopefully we'll be able to let them heal before he attacks the stitches.  Time to go to bed now on the final day of my 41st year..... 42 tomorrow..... I hope it's a good year !!

Some days are slippy, other days sloppy.......... Some days you can't stand the sight of a puppy......... Your skin is white but you think you're a brother....... Some days are better than others

Well I'm glad that week is over !! Talk about a hellish one.... not good. But the dark clouds seemed to have lifted when I woke this morning... so I'm feeling like I've come out of the eye of the storm. There will probably be more storms before the year is over.... but hopefully we'll get a few weeks of fine weather in !

Ok enough of that crap.... but it really was a bad week. If you haven't read already, it started out with complete exhaustion, followed by the Zometa infusion episode (knock-me-down flu like symptoms) and the Jekyll & Hyde and emotional personality disorders I've been experiencing too. Dirk nearly asked for the ring back I think!

It's been very tough emotionally for me.... Wednesday at the cancer clinic really hit me, it made it just a little bit more real for me. And it was hard to take. I started to think about what's ahead, stared to read up on the next steps, read blogs from other MM patients..... That coupled with all the other shit that was surging through me took it's toll. I got depressed and then angry and then depressed again that all this has happened to me. Did I do something majorly wrong to deserve it? Have I been so bad in life that Karma saw that I deserved cancer? I thought it was enough that our family should have to be there for mum and be able to support her, but now to be split across the world and not be able to be there for each other sucks big time. It really isn't fair sometimes..... I'm worried about all sorts of stuff.... obviously me, my health, Dirk, work, money, mum, dad, planning my wedding.... my sanity.... everything. You don't have to tell me not to worry about all these things... I know, I know.... but I'm just saying. This is whats in my head.

But as I said in the beginning... today was better. Even though Dirk had cricket, he chose to stay home (yes he did !!!) and we had a good day. Not in the most relaxing sense, but a good day. We got some long overdue chores finished. A few bits in the garden (Dirk) and a major closet clean out/up. Threw out even more fat clothes and tided out everything. It is now Ay-may-zing !! Sorted into summer / winter, work / casual / going out, pants / skirts / dresses. Just fab !! - Jo you would be proud !! And we finished it all off with a nice piece of slow cooked pork marinated in sticky bourbon bbq sauce and rice.... delicious.
I started cycle 3 of chemo yesterday, so have been pretty shaky and jittery this afternoon. When I eat now, I get the first taste of food, but then that's it.... nothing after the first bit when it hits your tongue. No after taste, no further flavours. Chilli is becoming a problem as it burns. And if anything is too salty all I get is the salt. Like a piece of ham tastes like a slice of salt..... so my choices are now a bit more decided, instead of random.

And so I embark on my birthday week :-) yay !! It's Thursday... just so you all remember ;-).... I'm really hoping it'll be a better week. I feeling like it will be. Dirk has booked at Balthazar Restaurant (a beautiful place and one of our favourites) on Friday night. Should be good. I might even wear my new frock again. It probably needs a dry clean first, but I can get that done this week.....

Well it's nearly 11pm so I'm off to bed.... night night...

Day44....

ZOMETA has potential side effects........

Yesterday I went for my first infusion of Zometa. I had a 9am appointment at the cancer clinic at St John of God hospital in Subiaco. I walked into the infusion suite and was warmly welcomed by the staff. They obviously spotted from miles away that I was a newbie !! Stuck out like a sore thumb !! I was put into the transfusion chair, raised high off the ground and they started. All in all it wasn't bad at all. Watched a bit of tv and relaxed. I must admit, it was a little daunting... Seeing people walking in at all the different stages of cancer and treatment. But mostly they were happy and chatting. I did get a small stab of fear at one stage.... This is something I will need to get used to. And although I sound vain, I worried about loosing my hair. Hopefully I'll be lucky and it won't happen.

I drove to work and jumped straight into the day. There weren't really any side effects. My MD & COO asked me to join them for lunch so we nipped down to our local Italian. Ordered a couple of bottles of Pinot Grigio and "talked shop". I only had one glass of vino, as I was drinking it I started to feel a bit clammy. Once we'd finished I made a very quick exit back to my office (and the aircon)
I was a little fuzzy by about 4pm, so packed up and left for the day. Dirk & I nipped to the shops for some food and by the time we'd finished shopping I was beginning to feel a bit weird. My fingers were tingling and I was feeling a bit cold. As we watched some tv, we looked up the common side effects of Zometa, and as in the movies, as we read them, it was like they took hold !! By 9:30pm I was wrapped in a blanket shivering. My fingertips were numb and I ached all over. Throughout the night I woke up every hour either shivering or hot, but mostly shivering.... Dirk had to get up at 4am and get me an extra blanket. He'd tried cuddling me, but he said I was burning up and couldn't stand it any longer!!

I had a breakfast meeting this morning in the city, 7am start! So when Dirk got up to walk the pups, I got up to have a shower. But this is where things got a bit sticky... I fainted in the shower.... I lost all sight, stumbled and fell out of the door !! (stop laughing Snap & Nags!!!) I managed to make it back to the bedroom and collapsed on the bed. I promptly fell back to sleep.... I had a lot of meetings today too, so I was determined to make it in by my 10:30am. At 9am, Dirk called to wake me and I tried again in the shower. I managed to use the shower gel this time before the same feeling came over me. My eyes went black and I started to shake... So back to bed. I was blessed by my cleaning lady before she left at midday... she was brushing my brow and blowing on me.... but it felt nice :-) I eventually woke up around 2:30pm this afternoon. Feeling a little bit better, but still like I'm coming out of the back end of a big flu bug. Not nice. Even my eyes ache :-(

And so I've tried to get my water intake up today. 2 liters so far... Another one to go. Dirk is at cricket training & I'm watching "Come Dine With Me". Hopefully I'll make it into work tomorrow and be able to catch up. Two sick days this week :-( and it was a short week !! Not good. Next month I'm going to try and book the infusion for a Friday. At least if the side effects kick in I'll be at home for the weekend. I have read that the side effects are worse after the first infusion.... Let's hope so....... I can't imagine getting "flu" every month!!

Day41....

Zometa
Common side effects for patients with multiple myeloma and bone metastases due to solid tumors include bone pain, nausea, fatigue, anemia, fever, vomiting, constipation, shortness of breath, diarrhea, weakness, muscle pain, anorexia, cough, joint pain, lower-limb swelling, worsening of your cancer, headache, dizziness (excluding vertigo), insomnia, decreased weight, back pain, numbness/tingling, and abdominal pain. These side effects are listed regardless of any potential association with the medications used in registration studies of ZOMETA in bone metastases patients.

Please, don't wake me, no, don't shake me...... Leave me where I am, I'm only sleeping.......

The wedding was fanTASTic .... Such a beautiful day. The bride looked amazing, there was so much fun, laughter and love around. Everyone was just 100% happy. Throughout the day I had moments of chemical buzzing, but mostly ignored the feelings. I even managed a couple of dances .... We finished around 11:30pm and went home to bed.

And that is pretty much where the weekend ended. The feelings of shakes and buzzing returned with a vengeance on Monday and I wasn't really able to move at all. To give you an idea of how I'm feeling is really hard to describe, but I'll give it a go. My lips throb - a little like you've eaten something that you're allergic to. At the same time my teeth feel very metally... and they kind of pulsate too. My whole body feels very sluggish. It's like my blood is now as thick as cake mixture.... or one of those volcanic mud springs you see on the Discovery Channel, and so every time by heart tries to pump my blood around my body, it takes more effort. My legs and arms feel heavy so it's a struggle to just do normal activities. Like walking and getting out of bed !!! They constantly tingle - not to mention the hand shaking, which makes me look like I have Parkinson's disease at the moment. My back is aching again too (probably from wearing high heels all day) all I want to do is sleep. I think this is the first time since I started my drugs that I've really felt so tired. It has finally caught up with me.... It's now Tuesday evening and all I have done today is sleep too. I feel weak and fragile. Tomorrow I have to go to hospital for the Zometa infusion. Hopefully it won't make me feel worse - soooo hope it doesn't make me feel worse..... Work had to take a back seat today. When I woke at 7am I still couldn't move.... I was just so wiped out. So I've spent most of the day sleeping again. I'm just worried that I haven't caught up enough yet though !! I guess this is just what happens every now and again. I just have to listen to my body and go with it.

But, having said all that, I did have a good weekend. The wedding was fab. And that's all that mattered. I'm going to be an aunty again :-) (YAY !! my bro and sil have just announced the news so I know it's safe to share) And I got to relax and sleep a lot - isn't that what weekends are all about?? I think so.....

Day39....

From the moment I wake up....... Before I put on my makeup...... I say a little prayer for you..

So it's finally the day of my friends wedding !! Yay !! So excited. The dress fits.... well it did yesterday. I have a new bag, polished toe nails and am feeling.... ummm... ok ish !!
Yesterday was a big drug day... all 3 CTD had to be taken so by the end of the day I was a bit of a mess. The shaking really hasn't stopped yet. The lack of taste buds is getting worse and the fuzziness is still a bit of an issue. Nothing much can be done about it all, so you just really have to suck it up and carry on. By 8pm last night, I was sick of sucking..... I couldn't really function any more. So we watched a bit of tv before I collapsed into bed and passed out.

Last time we caught up, we were having friends over for "Fri Nite Pizza Nite" Now you all know how frustrated I get about let downs.... Friday was no exception.... my bestie turned up alone as there was another last minute sick kid !!  Bloody kids... I tell you - why do people bother? I really don't get it !! They mess up everything ... rant over... (and I know you breeders out there will all have positive things to say about being a parent... blah blah blah.... I've heard it all - it's just not for me) BUT anyway.... getting back to my night - my friend from UK was here and my two besties. Beautiful bottle of Moet Nectar (my absolute favourite champers) and straight into chatting and laughing. Dirk took Andrew to the airport to catch his flight back home around 8:30pm and us girls didn't miss a beat (or a sip) We talked without taking a breath and gradually polished off two bottles of bubbles and a fantastic bottle of Cloudy Bay SSB. Nothing untoward, just talk talk talk.... weddings, old stories, work, health, cancer, sex, partners, husbands, ex's.... you name it we talked about it. LOVED It !! I had to wrestle the keys from Snap before she left as she really thought she'd be ok to drive home.... I think not !! I promised her I'd have her car back early in the morning and Di dropped her off.
The next morning when we dropped her car off she was in a darkened room with a sick bucket by the bed and a lavender wheat mask across her eyes !!! hahahaha - love you Snap !! I'm not sure she was going to make it to the kiddies party she was supposed to be going to at 10:30am !! I don't think her hubby was too pleased.... but we don't do it often, she was home before midnight, so I have to say - get over it !! She's my bestie and it was a night we really needed together.

I've been getting complaints about the lack of blog being penned !! WTF !! I thought this was about me ?? haha If I don't have anything to put down, I can't just drivel on. I feel like I drivel on a bit as it is... to drivel more every day would just be a big bore.... and I hate to be boring !! So you guys will just have to bide your time and wait for updates as they come. OK? ;-)

The only other thing at the moment that is annoying is our puppy - Maverick - he is constantly chewing EVERYTHING !!! Bless him he's a cute, cuddly, funny (massive) dog, but I'm sick of losing all of our cushions and citronella candles to him. If you leave it out, he'll eat it !! Dirk went to smear Vic's Vapor Rub on stuff, but he likes it so licks it off !! We finally had the last part of the pool fixed on Thursday - the auto water filler - by Thursday evening Mav had dug it up, pulled out the wiring and eaten it !! arrrgghhhh we were NOT happy. And I think Mav got the gist of our mood !! After all the abuse I gave to the pool company on Thursday, I think it's best that we don't do business with them again (12 times to come fix issues - and they think that's acceptable) So off to Bunnings this morning to replace the wiring we lost and hopefully Dirk can fix it.

I am so excited about today. I will have part two of this blog to continue tomorrow..... and probably some pics of the day too. It's a long weekend in Perth so tomorrow will be good for recovery. And to think I should have been in Toronto right now, the mining show is on that I'm running from afar. So hopefully all the men on the stand will do the right thing and make it a good one. Daily reports back to me should be interesting, but they're a good bunch so fingers crossed they'll make me look good !! I have faith !!