Sometimes I feel like I don't know .... Sometimes I feel like checking out ..... I want to get it wrong ..... Can't always be strong .... And love it won't be long...

A Card I Received Today !! Brilliant
Thanks Lori xx

It's Friday and I'm home (yay) I was released yesterday afternoon and it was a GREAT feeling. Not that  I have one complaint about the staff and the care they give. But the food is quite bad and the boredom is ..... well just plain bloody boring !!
It was great to have a visitor yesterday (thanks Phil) I got the OK from Dr Brad that I could start to see people and not be as "anal" as I have been about being around people.
We had risotto for tea last night (made in the Thermomix of course !!) and it was "heaven" just delicious. We watched some TV then I sank into my bed and drifted into a gorgeous night's sleep.
This morning I had to have more bloods done. And I had to fast too as I was having one called FMBS (i think) which was a urine test then bloods. So I filled my bottle then Dirk decided to drive me in. I haven't driven for 3 weeks and  wasn't sure how I'd go.
Once in we also decided to go sand see Tina instead of calling her. She was glad we did and asked us to go back in a hour so we could see the results.
We headed down the road - away from the hospital - for a coffee, and I also popped into work to say hi to a few people & pick up some mail. It was nice to see a fe people and pickup the latest goss too !! ha ha! (and what goss I got too - omg) 
After our coffee we headed back to HCC and Tina called us in.
Bloods were good-ish! Haemoglobin was 105 (good) White Cell Count 3.8 (good) Platelet Count - Blood 210 (brilliant - normal range) Neutrophils 0.68 (not so good) I was almost neutropenic again. Thank goodness it didn't show up yesterday as they wouldn't have let me go home from hospital !!
But this means I am now back at home, have to be careful with visitors again, careful with my diet again, and I also have another get into jail (Hospital Emergency Dept) free card again. Damn !!! I was hoping for better than that !! I'm also back on the injections just for two more days..... sigh......
However, I am feeling ok so I guess that's good. Have been a bit snotty as a result of last week's cold, but I don't feel (touch wood) sick !!
This afternoon, I've decided to make a playlist based on my blog titles. Seeing as my theme appears to be quotes taken from songs, I thought I'd put one together. If anyone wants it, I'll attempt to make it public.....? It'll be a right miss-mash of music !! This is my 74th blog entry and approx 85% of my entries have lyrics as the title, so it'll be funny to see how the list plays (for me anyway)
So that's it for today.... I have been quite low this afternoon. It'll be mum's birthday on 28th and already I can't stop crying. I think I'm beginning to feel the pain of her not being here. I'm having "mum-moments" about 5 times a day at the moment. Probably because I have so much time...... Time to get better and get busy I think !!! I don't think I could not work.... I miss it too much.
Anyway, now I'm babbling so I'll sign off for the day..... 
Thanks for listening xxxxx

.......Love is the answer....At least for most of the questions in my heart..... Like why are we here? And where do we go? And how come it's so hard? ...... It's not always easy and Sometimes life can be deceiving....... I'll tell you one thing....... it's always better when we're together.....

Looking forward to seeing my sis on Wednesday....

I'm in the middle of a Jack Johnson-a-thon .... and so I guess, feeling pretty alright so far too.

It's Sunday.... Thursday was implant day and my days have been relatively good. If I jinx myself by writing the following then <insert "F-style" curse word here>

Anyway here goes.... so far, no temperature, the anti-nausea drugs are keeping things at bay, no diarrhoea... the worst so far is the irritating Dracula's neck jewellery (Thanks Nigel - liked that one !!). But even that is beginning to settle and not be as annoying.

OK Coldplay-a-thon now..... JJ was getting a little melancholy for me......

I've been very careful so far. Bucket loads of anti-bacterial hand wash, lots of water, hydrating fluids and no contact with anyone or thing. Although I have managed a couple of trips to the park with the pups. I've also been sleeping well(ish). The olympics have helped too. Live streaming on the iPad on the middle of he night is great. I'm back on the Dexamethasone so that may explain some slight insomnia. 

I'm now on a neutropenic diet too. And it looks like I'll have to stay on this for the unforeseeable future. As I now have no immunity I won't be able to combat food bacteria. I'll have to start from scratch with my body. One of my biggest disappointments would have to be that we will not be able to visit "Sizzler" for the next year !! Oh woe is me..... how will I survive ?? !! No salad bar or all you can eat soft-serve is allowed to pass my lips !!! Looks like it will just have to be fine dining establishments and home cooked delicacies. 

I have a bowl of drugs I have to take every morning..... 

• Dexamethasone - Anti-sickness 2-3 days after chemo (all good now)
• Metroclopramide - Anti-sickness 20mg 2 tabs up to 4 times per day
• Pantoprazole - Antacid (and for nausea) 40mg 1 tab per day
• Fluconazole - Anti-fungal 200mg 1 tab per day (for the foreseeable future)
• Valaciclovir - Anti-viral 500mg 1 tab per day (for 3 months post transplant)
• Filgrastim - 300mcg Injections daily in evening D+5 onwards
• Gastrostop - 2mg Once it starts.... max 8 per day !! eeuww

I have my first check up appointment on Monday morning. I'm hoping Tina (my Nurse) will be very happy with me. 

My beautiful niece - who's birthday it was yesterday

And so back to the couch and the relaxing.... my Blue boys are about to start. I haven't picked them to win and after the WCE performance yesterday I'm hopping for some winning vibes in the house. I must also say that as my first year as an Aussie I'm a little disappointed at the performance of the number of Olympic Gold's for Australia!!! Go Team GB !!! Just saying......

Oh yes one last thing.... we've booked our wedding venue. Looking forward to Jan wedding......

Tell me how I'm supposed to breathe with no 'hair' .... Can't live, can't breathe with no 'hair' ....

It's falling out !!! (My hair) Today.... as in, right now !! Yesterday it wasn't... today it is. In clumps too.
I was prepared for it..... just not today. I knew it was going to happen. I just thought it would be after the next lot of chemo... and I wouldn't be at work ! I'm not really quite ready today... I was preparing for 2 weeks time. I haven't had chance to practice my bald look yet. Hopefully it won't take much practice, especially as I only have overnight now to get it down pat !! eBay might take a hammering tonight.... get your hats online eBay sellers.... I'm coming !!! Hat donations also welcome peeps....... Oh well..... here goes I suppose. Now I must go out and get that Hermes scarf !! ..... and the clippers - gulp.

Piet Mondrian - Art Gallery of WA

Anyway... I am drug freeeeeeeeeee!! I can't believe how different I feel compared to the past 6 months. I'd really forgotten how it felt. In fact it's been nine months since I felt like this... in fact, I've not been this weight and felt like this. Nine months ago I was "post surgery" and still losing weight. So to be able to enjoy the way I feel at the moment is quite a nice feeling. I'm still tired. I've been sleeping a lot. But during the day I feel good. I went back to work yesterday for just two weeks. This is how long I have until the Stem Cell implant happens. Yesterday Dirk & I went to hospital to visit my nurse practitioner - Tina - She went over the whole process of phase two. And I have to say, she is pretty amazing. We also bumped into my Dr - Dr Brad. He was saying how well my collection went. To understand how the collection calculations work I have copied the following:

"How many stem cells do I need? Over the years, a number of studies have been completed to determine the number of stem cells you need to safely undergo high-dose therapy. The number of stem cells is quantified by a special laboratory technique called “CD34+ cell analysis by flow cytometry.” A small sample of the stem cell collection is tested for the number of CD34+ cells in the product. We know that a minimum number of stem cells to safely complete a transplant is 2 million CD34+ cells per kilogram of body weight. The number of CD34+ cells is checked in each daily collection and the number tallied. The stem cell collection process continues daily until the planned number of stem cells is collected – usually 1–4 days. Some transplant centres check the number of CD34+ cells BEFORE starting leukapheresis to make certain there will be a good collection that day. Most transplant physicians collect enough stem cells for two transplants (over 4 million D34+ cells per kilogram body weight). "

Giorgio de Chirico
Art Gallery of WA

The reason Dr Brad and Tina were so happy was that my "CD34 - Absolute Count" was 97.3 from just one day !! Yay me !! (They needed the count to be 4 Million CD34+ cells per kilogram of body weight.... mine was 9.7 Million - I think!!)
The next hour was spent talking to Tina bout the next stage. One comment that kept being repeated was " I'm not going to lie to you.... it's not going to be easy"
Diarrhoea, tiredness, sickness, mouth ulcers, indigestion, fever, bruise easily, hair loss..... these were the most common side effects. My body must have heard this and saved me the worry of the "hair loss" by getting that one over with nice and early !! Thanks body !!
So anyway... I was also thinking about my blog and once I start this next stage. I will try my utmost to blog what's happening, but the posts may be very short and also randomly posted  as I really do not know how I am going to be. Like I said though, I will try my best to share what's going on.

Black cockatoo in our tree

I have no idea how I'm going to manage a photo a day too. I mean, how different does a ceiling look day after day !! Another thing I will have to do my best with.
One of the most exciting things that has happened this week though..... and it negates all the above feelings and makes me happy...... is that my dad has booked his flights and will be coming to visit. BIG YAY !!! Soooo excited and cannot WAIT to hug him. If there is one thing that is going to get me through all of this, it's the thought of seeing all my family soon. If all goes according to plan, we may have a wedding to plan for January. This is going to keep me very busy and just a tad excited. But before I jumped too far ahead, I will get through this so I can get excited about 2013. This is my plan.......

Wahol

Note: I caught up with a very dear friend last week and we decided to go to the Art Gallery of WA.  They had an exhibition of Picasso to Warhol. I had a great time taking snaps of the art. Afterwards we came home and hit the vino..... I believe I went to bed around 2:30am.... to be honest with you, I can't remember....

And won't you kiss me..... On that midnight street....... Sweep me off my feet...... Singing ain't this life so sweet

When I was a little girl ... about 4-5 years old.... our nana would take my sister and I to the Harvest Festival at the local church in Castle Donington. There would be vegetables and flowers all over the church. Displays made out of seeds, fruit and vegetables. I don't remember much else about it. Just that cool, calm feeling in the church, voices echoing, the sunlight shining through the stained glass windows.... and my nana holding my hand so I wouldn't do my normal disappearing act, which I always did if i was free of a hand. My grand-dad was a market gardener, so Harvest Festival was always an occasion that was close to nana's heart.
That was all I knew about "harvesting" until this past week...... 
This latest harvesting experience was not about vegetables or flowers though. It was about plasma..... white blood cells... and stem cells. Building up the amounts so they could be sucked out of me and put on ice. So that in a few weeks I can have them put back in. This is the new harvesting in my life.
The flu like symptoms were the worst on Saturday. Fever, aches, headache, bone pain. It was awful. I went to bed wrapped up with PJ's on, electric blanket on and heater on. This was still not enough. At 2:30 am I was still awake and not feeling good at all. I had a temperature of 38.6C at one point. But most of the night it stayed around 37.5 - 38C. I woke up in the morning soaked through.... I had sweated so badly overnight, I'm surprised I hadn't given myself an electric shock from the electric blanket !! .... But I actually felt good. I got up and had a hot shower.... by the time I had changed and freshened up I was really feeling 100% better.  
The injections over the week were administered by Dirk. He became really good at it. One tip.... don't rush the injections. It is less painful by just taking the time to do it slowly and easily. The bone pain became manageable eventually with paracetamol. I had to walk slowly as any jerking on the body sent pain through your skeletal system. Mainly the sternum, ribs and spine area. A little in my legs - not much in arms or anywhere else. But I did get neck pain and head spins from moving my head too quickly.
So as I said... Sunday I was feeling pretty good. We decided to go and look at a couple of wedding venues in the Swan Valley. It was a beautiful sunny day. Although it was a bit cheesy with all the stretch limo's, Wedding singers, cake decorators, wedding planners...etc ...etc... we did have a laugh. AND... we think we may have found a venue..... and a date !! WAHOO !!! It's actually feeling a little bit more exciting now. I think I could get into the wedding planning shite... 
Onto Monday....7am we were on the road to pathology for the blood tests. Hospital, blood testing and potential harvesting day.... I say "potential" because based on the blood test results, the actual harvesting may or may not take place. There is a three day window for the harvesting, so if the blood results are not good enough on the first day, then they send you home to continue with the injections and repeat the process the next day. My blood test results were good so I was in for the harvesting. 
I also met another MM patient that I had met the week prior - he was on exactly the same cycle as me. We saw him at pathology and then in the Haematology Care Centre we got to chatting. (and swapped numbers) He had also had a rough weekend. Infact the symptoms had resulted in him going to Emergency on Saturday night with the fever, sweating and bone pain. Unfortunately the emergency department did not see his condition as an emergency and did not attend to him at all. He ended up leaving and going home.... this is not a good sign for the future !!

Harvesting means that you have two cannula's (one in each arm) inserted. One for blood out and the other for blood back in. In between the two arms was an "Aphorises" machine called "Freida" There is also one called "Agnetha" in the department.... anyone seeing something here? Dirk said he saw an old looking retired machine called Bjorn near the toilet.... No idea where Benji was !!
I was hooked up at about 10am onto Frieda and my new friend was across the room hooked up onto Agnetha. The cannula's went int easily and we were off...... well not quite. every time my nurse walked away. Frieda had a meltdown and red lights started flashing.... and my blood stopped flowing. When on this machine you have to sit with both arms straight. No bending as this sties the blood flow. The only thing that stopped this from happening was if I sat up straight. No slumping. I was laughing saying that mum must have been watching as I was always in trouble for slouching !! So after a disastrous first hour I was up and running. My mate across the room already had plasma collected in his "drip bag" ..... I was jealous as mine was still empty. Where's the fun without a bit of competition? But we were on our way......
The next five hours were not fun..... as I couldn't move, it gradually became more and more difficult. On top of the fact that I was to stay as still as possible, I also started to react to the anti-coagulant that they transfused back into me along with the left over blood after the stem cell's were skimmed off. The reaction to this was a pins and needles like feeling throughout my body, but mainly in my face, neck, legs and thighs. I was warned that I could get this reaction and that my lips tingling would be the sign. As I am such a brave thing and the tingling did not start in my lips, I may have been delayed in telling my nurse that this was happening. And so by the time I was hooked up to the added calcium infusion to assist in the tingling, my body was crawling..... and I still couldn't move. This all happened around 12:30pm. Little did I know that I still had another four hours of harvesting to sit through. 
Needless to say I was pretty uncomfortable for the next few hours. I managed to hold back a pee until around 3pm, but realising that I still had a while to go, I asked for the commode to be rolled in. A little embarrassing, but at least I didn't have wind or need a <cough> number two !! The tingling / pins and needles did not subside after the 1st litre of calcium, so I had to have another litre bag out into the IV. Finally at 4:20pm we had collected enough plasma / white blood cells / stem cells to be considered a "good collection." We had reached "target". The cannula's were removed and O...M...G.... I was finally able to move my arms. They were soooo numb. I was tired, headachy and stiff. I was the last one out.
During the collection, I was also able to chat to the Nurse Practitioner about the stem cell implant phase. We set a date for the implant and I got all of my questions answered. 
I have to say the nurses and staff at the haemo clinic are really amazing. They give personal care and never make you feel like just another patient. Names are remembered as are previous conversations and snippets of information. 
My implant starts on 30th July..... 
And so I returned home.... and have spent the past two days at home sleeping and relaxing. I got a call yesterday to say the quality of my collection was good and I was not required to go back in. This was also good news as I had to continue the growth hormone injections just in case I would have to go back in. 
Today was the first day in 165 days that I have not had to take any cancer related drugs.... and it has been a good feeling day. 

Is it getting better? ..... Or do you feel the same? ..... Will it make it easier on you now? ..... You got someone to blame .....

So....... the chemo and injections? hmmmm...... what to say !! It all started off ok. And to be honest has been alright...ish. 

Last Friday was the chemo day - I've already covered all that malarky. No need to waste keystrokes repeating all of it again. Tuesday I started the injections of 'Nivestim' - these are the growth hormones that I self inject morning and night to promote the stem cell production - prior to the harvesting. Actually when I said "I" started the injections.... what I meant to say was that Dirk started stabbing me !! much (I'm sure) to his delight. There were also all of the other drugs around last Friday's chemo that seem to have gone ok. I haven't had too much heartburn and I think my uterus is ok - how do you tell?

Anyway, back to the injections..... all good until around Wednesday night. I started with a headache when I went to bed. And by the morning had a really bad one. I'd slept really heavily Tuesday night and felt really groggy all day Wednesday. Thursday morning felt achey in my body all day and after Thursday evening's injection only slept for 3 hours before lying awake for the rest of the night. The feeling is like a body slamming flu - without the fever or chills bit. It's between a 'flu like feeling' and an 'aching from over exercising' feeling (Yes I do know what that feels like !!) ..... and now.... Friday evening ...... I just feel fragile. It's harder to walk as my spine hurts. All my larger limbs ache ..... but most of all my ribs and spine. Paracetamol is my new best friend. 

You know what I like about writing a blog..... you can whinge about every little thing. I can put it out there, share it with the world without actually saying a word. I think I should change my title to "vixenaus - my multiple myeloma whinge-fest" At least that way I'm not false advertising either. It's clear that when you see the title of my blog.... you are going to have to read about me moaning and whinging about shit. No surprises. 

I was wrapping a present today for a gorgeous friend. And all of a sudden had a flash back to December last year when I helped mum wrap all of her Christmas pressies. Flood gates opened and I had a 'mum memory meltdown'. These are going to become part of life now I think. It wasn't the first one, but it was probably the most hard hitting one I've had so far. And because it took it by complete surprise. It took my breath away. I must say though, mum would have been very happy with the gift wrapping. It was very Gerry !!

I was also accused of "over-sharing" last week. Too much information being published and shared. But I've always been a big over-sharer. Always worn my heart on my sleeve and let people know exactly what mood I was in. We are living on a world of over-sharing. Even the least exciting people share their dirty laundry. I personally blame BB,  Geordie Shore, TOWIE and all of those other Dirty Laundry Airer's. (And looking forward to the return of BB too btw !!!) I can always stop my blog and close down Facebook. But my dad has just joined and I'd miss all his updates !!! And anyway..... the person that accused me of this also laughed at me when I put on a beanie to cover my awful thinning chemo hair this week. So who's side are you all on now?? ha !! 

Off for the harvesting on Monday. Only 2 days left of injections !! yay !! I'm having my hair cut tomorrow. I haven't lost it, and to the untrained eye it probably looks about the same. But it is soooo thin now and whispy. So I thought I'd just get it cropped. If I like it I'll share.... if I don't.... I'll probably still share.... seeing as I'm an "over-sharer" !!