what happens in the Procedure Room stays in the procedure room.

Look I really want to tell you all what happens but I can't. No I'm not sworn to secrecy by a pact with my cult pals...no I'm not under threat by government forces.....
Its just about the sedation! i can't remember!!!
Bluey remembers and then tells me stuff like I should know or remember, they gave me my first sedation shot and I remember it going in to my drip but that's it until I woke up a few hours later.  No Joyce I don't remember Dox Shoezenbootzen coming in... I don't remember the long conversation we had "what about?"I said "just about s**t" Bluey said. No I don't remember whine like a kid when the needle set he had in my hip bone was faulty and had to be redone. No I don't remember hearing a radio pass by the room and saying " Is that radio?  Hey I can hear radio on my fillings!" and freakin NO I CAN'T REMEMBER talking a 100 miles and hour to ANYONE that came into the procedure room about ANYTHING.

Apparently I'm hilarious and chatty to all the staff.

So apart from that what's up.

I'm pretty sure that my bone marrow is not up to scratch, and that something has to be done. As usual we don't get to talk with the Doc about the what ifs until we have all the data and this time it means a cremea test or a climation test or a climidia test. I'm pretty sure its not the last one, but it sounds like it. Any way part of my bone marrow (that was savagely torn from my butt when I was turned the other way, BTW) will be sent off to the scientists at the Royal Brisbane and Women's Hospital.
---- Lets take a minute for eveyone to chuckle about me going to this hospital....all done now? back to the story----

Anyway we have a return appointment to talk to the doc about it next Tuesday. So more on this topic at that time.

In the meantime attend the tale of my brave sister-in-law and her husband Eugene and sister Bluey, and me.
All four of us are here in Brisbane because said sister, nicknamed Yoda, is in Intensive Care after her operation to remove parts that were damaged due to cancer or were surplus to needs. We have spent a couple of days camped in the ICU waiting room taking turns sitting with her but she is getting stronger everyday and will be on the ward shortly. She has made great strides in overcoming this disease. The chemo worked a treat and the surgeon is very happy with the op. She thinks she should be stronger then she is. Is that sounding familiar to anyone? anyway we are here for another 10 days we think.

Lots of time to think...read.....remember (well not me, but you can remember)

More later
if I remember....
Chris

Hmmmmm

Okay so I had a littl trouble last week. I had a bit of a sprain, my leg ballooned up, sore throat, headaches for days and nightnsweats and the occasional pain in gut so I called Doc Shoozenbootzen and then tagged along with the Jo trip in to Brizzie Momday Tuesday. ?by that time the symptoms had changed and we agreed that 1. I sprain my leg and the swelling was only part of that, an over reaction but okay. 2. My sore throat and possibly the headaches were from a viral event.3 the headaches were possibly from bad hydration because I did a lot the weekend before and night sweats. 4 abdo pain gone huh.5. My bloods show no bad news my fibtrosis has not done a rapid escalation. Yay Then I get phone call from the docs office saying he saw something in the second part of the bloods that he wants to check out, come back in tomorrow! Good thing this was Monday and we already were set to stay the night. Went back in and waited, had more blood taken and waited... Oh it's okay, a trend he saw, changed in the last test and it's okay now! More later Chris

No really I'm Fine

It's this thing about my discovery trip. Discovery about some things to do with my body. I find that I figure stuff out based on what other people have going on. About how they react to me and what's up with Chris

Lots of people are worried and concerned about my situation right now. Maybe that is based on what they read, who else they know what they hear.

I'm not worried. 3 reasons.
1. I'm not that kind of guy anyway.  I'm pretty much just a positive guy.
2. I do what I'm told to do.  Sounds weird but if, as I have been, doing exactly what the Docs and nurses (including Doc Bluey) say then I get into this state of not worrying. I don't even try to mess with my rate of low on intragam days...I can just sit back and let others worry and we have some Cracker Jacks in this group.
--------English rose, My pal the Goth, Motorcycle Mama, the Sunshine Coaster, The Scots bombshell amoung many many staff at the clinic. My Sister and Brother the Hill people. The Canukaroos in the valley and their spawn and partners. The half hill people, the full valley people.  My Brother and Sister, Cow bum and shiny the Buckans. The greatest nurse Practitioner in Q and her cowboy, sorry Jackaroo and their spawn. My Brother in Africa I wish he's get home and Sister with the pipes. The International  Home stay mums and families. I can't forget the Canadian contingent of worriers My Sisters, the tow dude and my Brother/donor.  My oldest friend Mac.  My school friend who taught me about being relaxed and his wife who I introduced to him! My acrobatic partner and his family, D the Rapper, Bill Gates the Junior and all the others thinking about me in Calgary or Victoria or is she in Calgary or the woods??? Anyway I love doing these lists because I get to think about all of you and when I miss someone they get in touch!-------
3. I have NO symptoms, no GVHD, No rashes, no tiredness, no blackouts  almost no night sweats, no gall stones (no gall bladder), no pain in my spleen (again no spleen); my only problem is some numbers in red on my blood test results. And Doc Shoozenbootzen has got lots of ideas about treatment!

So you all need to relax. I'll be sure to tell you when you can get agitated again.

Do what I'm doing.
Sitting in my underwear 'talking' to my friends.

more later Chris
P.S. the humidididity is close to 100%, 28 degrees and NO wind...hence the relaxed clothing afternoon.

DNA in my Lymphocytes

Yep I said it. That's right girls and boys I'm talking Lymphocytes.

What the look like when they are in town and what they do is not what I'm here to talk about (good thing too, because I haven't a clue). What I'm talk'n 'bout. And I'm talking to YOU, is who's are they? Or perhaps it whom do they belong to.

Part of the bone marrow that will be yanked out of my hip bone in 5 weeks will be sent to the hospital where the scientists will determine are they Rick's, the brother/donor, or are they left over crap from my old bone marrow. The former being excellent and the latter being...what I said.

I guess its important to know this in order to help me fight my fibrosis.

Hey I just noticed that both my sis's and my bro are in this thing in my marrow. Oh and my pal Fi from the clinic. How can such a fine group of people spell a crap thing in my marrow. ....huh (he said looking for the emoticon for shrugging the shoulders in a downward direction accompanied by a grunt...and not finding it). So the X and Y gens haven't  figured all the digital stuff yet. They've got no....huh.

So more waiting.

My first Shave, with Kirsty and Louise r-l

 In the meantime consider going to World's Greatest Shave and searching for chrisco and making a donation ....it might get there in time to help them to find out who really owns my cells?
more later
Chris

What happened Friday?

Well was it a good day or a bad day? That depends on your starting point I guess... My red blood cells were way up and I thought that meant my fibrosis was at bay. Not so much according to Doc Shoozenbootzen. My neucluated reds cells were up as well and that's not good so we go another 5 weeks and then have a Bone Marrow Aspiration. Many of you will remember how much I truly love a good BMA........NOT! But Doc knows my deal.... He can jam as many steel tubes into my hip bone as he likes, as long as I'm not there. He gives really good sedation! So it's more of a nonews day. Its like the glass half full argument. I had a Good day. Back on the Bruce again at Gympie already. Anybody want to know what part of the BMA test will be looking for? More later Chris

Tomorrow is a big day I guess.

It could be a big day or it could be a bad day or it could be a day of “we still don’t know”.

Is this third one really a bad day ….cause I’m starting to get on edge a bit and want an answer…. or is it a good day because by being indecisive, it’s therefore NOT a bad day.

Oh Sorry I should have started the blog by saying g’day. How ya going.

Well it’s going to be a long day as usual. Up at 5:00 and out of the house at 5:30, Sorry Floydd that means only a quick play then locked up all day. We have it timed.. we call the café, Sexie Coffee at Torbanlea and that’s 12 mins to them and that gives them just right time to make brekkie and coffee. Quick stop here so we don’t wear our food, then on to Brissie for 10:40.

Can I tell you a secret about Bluey? She is a nervous passenger so I can’t drive! I offer every time and she just laughs. So it’s a big day for her too. Drive all the way down and back in one day. I worked out that with tomorrow and last month and the time in between she will have driven the 7 hours round trip........... 6 times!

Okay I;ve dance around myself enough. I feel like the fibrosis has been reduced by my new immune system which has be cranked up over the last two months of reduced immunosuppression, In fact I have been without any immunosuprression drugs for two whole weeks now! Thats been 5 years getting down off them!

But I won't know for sure until the blood test tomorrow AM. 

Here's my secret. I haven't had any other symptoms of GVHD which normally would be a great thing.... but what if my immune system does not have the juice to kick the fibrosis? What if my lack of symptoms means I have a 'weenie' immune system. What if my feeling that I have better red cells is just false feeling?

I wont that for sure until tomorrow either. 

Hmm will I sleep tonight.... yep! I always sleep!

I registered for the World's Greatest Shave day before yesterday and I have received donations already. thanks so much. I know people that directly get services from the Leukaemia Foundation and that is fablulous.

There has been a very large number of people getting shaved this year it seems to me. Today at School a teacher shaved her head at lunch time and has raised over 2000.00. Lots of other teachers shaving and coloring as well.

A big shout out to a shy student that was standing well away from the teacher shave event and quietly asking for donations as she is shaving at the public event. I have gone to her web site and made a donation and I think she would be rapt if any body else gave her a bit as well. If you want to; go to World's Greatest Shave and search for Tenielle Simpson in Queensland. You have to be a bit persistent as the search engine is not so hot this year.

more later

Chris

Cooler nights but the days still hot

Yep, here we are again last weekend and the one before we complained about the floods and now it's hot and sultry. I'll still take this over the flood. So I reduced my last immunosupression to half again after the last Dr appt. and as instructed dropped it all together a week ago. Yep I'm off all immunosupression drugs with very little side effects. I'm probably coming off all the rest of the support drugs ( anti viral, anti biotic, anti fungal, and vitamins and mineral. Very happy to be getting off the cholesterol drug as lately they have tentatively linked it to dementia and something else that I can't remember..... Sorry but that bad joke just called out to me. I Just hope that the fibrosis is being attacked by my new immune sys. I think it's working. I have been feeling stronger and wanting to do more so that computes with greater red cells being produced in the less cramped spce if the fibrosis has reduced. Usually I can't really "feel" any of the results of drug changes. Imdon't have symptoms I can relate to. So I'm worried all this energy is just manufactured but my hope. If the fibrosis is not controlled by my own imminence sys then I have to go on to other therapies and that's not so good. So five days till I see doc shozzenbootzen and get the latest blood results. More later Regs get out your iPad to decode the following 43(/ )-006 ?845):-6