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....

Every little step I take, you will be there ...... Every little step I make, we'll be together .......

So here's a quick update for you all on today's hospital visit.....

The next step is the Autologous Stem Cell Replacement.(ASCR) I went and met with my new haematologist specialist this morning. Dr Brad. Nice chap - very chatty, helpful and I didn't feel at any stage that he was trying to rush me or get rid of us. He explained everything and left us plenty of time to ask any questions. The nice thing about him was that he also specialises in Multiple Myeloma too. He is involved in the research and clinical trials associated with MM and has a keen interest in any of the research. At least this means he will have a vested interest in anything that happens throughout my treatment. He made me feel very comfortable about the next stage. We were also introduced to Tina the nurse practitioner who will be overseeing my treatment. She showed us around and went through the whole procedure. We made all the necessary appointments for bloods, chemotherapy, bone marrow biopsy etc etc.... and then sat and chatted more about what to expect.

The Stem Cell Process

It's all a bit daunting to be honest, but I did feel that I would be OK. I wasn't told it was all going to be fine. I was told it was going to be hard, a little bit painful and tiring. But at the same time, I was also assured that I would be under the best care possible and that they would be looking after me every step of the way.

So next week I go back in for bloods and a bone marrow biopsy. Then at the end of the month I start the chemo for the stem cell collection. This is where I will have a high dose of Cycloblastin (probably 2g) and will more than likely lose all of my hair..... I was offered a wig voucher ! - I will have to self administer growth factor injections for a few days before-hand and then will go in for a 5 hour stem cell collection, after blood tests to determine that the stem cells are at the right levels.

Once they have enough for two ASCR they will freeze the stem cells and send me home. After that, it's a matter of booking the time to have them transplanted back into me. This stage is still not 100% clear, there was so much information to take in on the first part that they didn't go too much into the next part. But needless to say, it's all starting and we're going ahead with it......


Well, that's all I have for now..... just thought I'd let you all know. Feel free to ask any questions......

When I get older.... loosing my hair..... many(?) years from now.....Will you still be sending me a valentine............Birthday greetings bottle of wine?......

F*#K Multiple Myeloma T-Shirt

I've been sitting here with an empty blog space for a couple of days now.... Over the weekend I stumbled across another blogger and started to read his experience. The reason I started to read was because he was young and started on the same drug therapy as me. So I thought it would be good to compare notes... anyway, after starting at the beginning of his journey and reading on, his journey became more complicated. His stem cell transplant was unsuccessful and the cancer came back aggressively and more vigorously than before. So the next step for him was stem cell donor - they found a complete match from his older brother and he went through the same process (albeit a little more painful than the first time) only to be told that it was rejected once again - he was also suffering with shingles, infections and graft vs host disease. His prognosis is 12 months..... The guy is amazing and has maintained strength and a sense of humour throughout. But no matter how you look at it... it's a scary thought. Another reality check I guess.

And YESSSSS I know... it's just one person and there are so many other successful stories, I know all that, you don't have to tell me. It just caught me off guard, I thought I was about to read about a similar story to my own, and be able to gain some insight into the stem cell therapy and his experience through it all. He's an amazing inspiration and I'll be following his blog now, as his journey continues. For anyone interested here it is Sean's Blog

Other than my reading, our weekend was delightful. Friday night was pizza night - yum - and a quiet night watching the telly. Saturday we got to lie in until about 11am !!I started cycle4 of my chemo, then we made hot cross buns - which were absolutely delicious (yes in the Thermomix too) and more TV shows and relaxing. Saturday evening we went over to friends place for a delicious dinner. Unfortunately for Dirk it was a fantastic piece of salmon.... excellent for all of us that eat fish !! Dirk doesn't eat seafood... oops (sorry Jane, he didn't want to say anything !!) He ate half of it, and all of the salad and veg, and actually said it wasn't that bad, but I think it was a little bit of a struggle for him. Luckily the company and the conversation were fantastic so it didn't matter. And then there was dessert and choccies <drrooollll> !! Back home at midnight to swallow some more pills (Thalidomide) and off to bed. (sleep came later)

Sunday was similar to Saturday - except Dirk did a lot more than I did. He washed the cars, cleaned the back deck, we washed the pups and I did the washing. Had some Thai take-away and watched more TV.

Sleep has been a bit hit and miss again recently. Late nights and then finding it hard to wake up at 7am for work. Most of the time, Dirk attempt once or twice to wake me, but if he doesn't get a response, just leaves me to sleep. Which is ok most of the time, except I have some early morning meetings on some days and have been late a couple of times. This isn't a good thing as I hate it when people are late for my meetings, so I can't now be doing the same thing. I either have to get Dirk to whack me out of bed or change my meeting times.... but the latter could be hard as some of the earlier meetings are with other regions so are planned around their time zones.... looks like the whacking scenario is the only way to go - I can hear Dirk cheering at that  opportunity !!

Looking back at the blog I was reading over the weekend, it's got me thinking about why I was drawn to it.... my friend at work pointed out that maybe there was a reason I read the blog. I think there was / is. And I think I need to stop procrastinating over what I am going to do and start acting on these things.... like my diet options. I haven't really changed too much yet, I've been thinking about it, but haven't done anything. If I am going to beat this disease, I need to give my body every available chance. I need to eat the right foods, boost my immunity and get serious about putting the right things into me. So this is my new focus. Good energy and immune boosting foods and supplements. Another thing that I realised after reading Sean's blog, was that this is serious.... it's not going to go away.... as yet there isn't a cure. It was a wake up call to me. I need to face this head on and think about my future - my long term future !! So that's what I intend to do.

I'm off to the shops now... time to stock up on a few things. I'm not going to go full on into it, as knowing me I'll fall off the health nut wagon in about 3 days !! But I'm going to start introducing healthier options and think about what I'm eating and drinking from now on. Start thinking before reaching for the high sugar biscuits and cakes and decide if this is going to feed cancer or attack it..... watch this space......