No its really curly!

See my new hair is curly and darker brown than before. Weird eh!

I saw Schoozenboots on Friday and he's generally happy with me. Except my liver numbers have gone high again and he's wondering if I just drink too much or if I'm getting GVHD, or if we dropped the immunesuppression drug too much last time sooooooo i'm on a part of a tablet more of the drug and I have decided to quit drinking again and then we will see in two weeks what's what. I don't have to go down to Brisbane again but I do have to get a blood test locally. Then we will talk by phone.

He did a bone marrow biopsy agian, my 6 monthly one. They are getting easier each time; i guess I'm relaxing. Although Joyce got to sit in and watch this time. She said I told him "it's hurting, its hurting" and he just kept going and turned to joyce as he shook my butt around drilling into me, "its okay he won't remember". I don't remember the pain but I remember saying it to him.... but I was so out of it I don't care. I guess I'll get the results down the road. It took almost a month to hear back last time.

I have to do my 6 month tests at the hospital; lungs, heart, xray etc in a few weeks.

I also had a skin appt this time and guess what, I do have the much rarer x-linked Icthosus (just means fish scales and I got it on my mothers DNA). Its no news for me just dry skin in the winter but if I had a daughter she would have longer labor if she was having a boy, and she should check his testicles to see if they drop properly. There is a slightly higher incidence of testicular cancer with this condition so I guess I can look forward to a much closer relationship to my GP from now on ;-) I don't remember Rick ever complaining of dry skin but you might want to look into it Bro.

-------Warning science geek stuff coming! Just skip the next parargragh if you aren't in to it.

My DNA has a bit of missing code at one of the skin chromosomes which means I don't produce a particular ensyme that allows the fat in my skin to change and release the dead skin cells so they stay on and make the scally look. The other problems come because often there are other "dropped" bits of information on other chromeosomes on either side of this chromosome and its in the sex and testes areas so that's why they keep an eye out for the NOT dropped ball! I don't get any treatment just cancer checks more regularily.

Bluey is great. She's a bit busy at work these days, leading up to her AGM, and the funding for the new building is still not all in place and some folks are getting antsey.

We stayed at Bev's and got to see the Riverfire spectacular. They put barges on nine reaches of the river. A reach is the straight bit between the bends. On each of the barges and from a number of bridges and high rises in the CBD as well they put fireworks. They are all microwave linked and the whole thing is miles and miles of coordinated fireworks. The whole city was in our local bottle shop that afternoon and by that evidence i reckon there were a million party goers on the banks of the river last Saturday! Bev's roof top patio has a stunning view of the bigest bridge and two of the barges so we had a great view. She had a big open house and other neighbours in the building, her staff, friends and family including her terffic grandsons were there. It was a big time and lots of fun. The event starts with the local precision flying team, Military attack helicopters thundering up and down the river and the fire event starts with a pair of F111s doing a fuel dump right over our reach of the river. Seriously cool. You could feel the heat on your face and the sound sure gets the crowd going. Anyway we got up early this morning and came home so are having a relaxing day here.

The house plans are back at the draughtsman but I have to get a number of answers from my partners and from the steel house company as we proceed. We may not be starting to build in September but maybe by the end of October!

more later
Chris

Curly hair and rain

We are still astounded by the growth on my darker and curlier hair. It's soft and growing quickly. how weird.

we got a steady drizzle of rain on Monday and then last night and tonight a low off the sunshine coast brought us a rain depression and high winds. Good solid falls but still not torrential. I can see the dam level rising. For the northamericans in aus the dam is the body of water as well as the berm that holds it in. Any way they are still saying we need more as it only raised the town water supply dam by a few percent. I think we are down to 25% of the dam capacity so we are still on level three water restrictions. this will really helpthe place look better 'cause all of the bay has not been able to water outside for months.

I'm doing well. I need to lose a bit of weight and I have fallen off my exercise program.

We are pushing forward on the new house. We got preliminary drawing bck from the designer and will look at this weekend I guess.

more later
Chris

General personal life stuff

Okay some of you ,I know. will want to skip this general interest and personal life stuff but I may just seed it with health tidbits so be warned! If all your friends are up on the comings and goings of Joyce & Chris, and you are still in the dark you may want to read on.

Joyce is good. I'm good

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Just kidding

We are good, that much is true. I was going to write a bunch of email to day but my fingers are getting tired so please forgive me I'm going to write it here then email my blog address to you as reminder that I've put news up.

It's two days after my 55th birthday and isn't that a kick in the pants! I realized the other day that I am actually looking forward. I don't mean that i wasn't positive about my future and confident in the doctors but I just wasn't really daydreaming on the possibilities, like I have been lately. Let me give you an example....I am so looking forward to getting our new slasher. and using it on the tractor to inilalate the pesky grass along the south fence. Picture a 6 foot wide 75 horse power spinning blade of steel housed in a bomb proof square cutter deck on the back of a four wheel drive CASE tractor. It is the biggest lawnmower you have ever seen. It is seriously MORE POWER ouhh ouhh ouhh. This is something that I haven't thought about until the past week.

I so want to be able to travel. To be at Melissa's wedding, to get to a nice sunny beach in the winter but that is a ways away. Even if I get the go to travel I can't be in the sun 'cause of the drugs. But i've started thinking about it. Looking forward to it.

I'm looking forward to Joyce getting a break. She's back at work having gone from full time carer of me to full time carer of her chunk of the Bay's population. She is definitely the trooper here.

I'm a little worried and I think Joyce is too about the current Flu epidemic in Australia. There are kids dying (okay only 4 and they had complications and they are all, way away from here, but still). I try to stay out of big crowds at the shops, I don't garden and the yard looks it!

I called up some help the other day from a yellow pages ad and got two "Rent a Hubbies" they were great and I just told them what to do and they did it. Who knew that that's what Joyce and I needed was our own hubbie?

I have the house sketches into the draughtsman/designer! We get the first real sketches back next week it looks like we may start the steel shell in October if luck holds. We have a builder but we have to get the approvals and that is a nightmare. Everyone keeps saying that it's not so bad it used to be way worst. You may know all about this but the local guy does the drawing for the interiors based on the engineers drawings from the Steel kit House company, then they go to two places. To the hydraulic designer for the rain water system(required), and the water treament system (required because there is no town sewage). Then that bit goes to council plumbing section for 4 weeks for approval which is pretty much guaranteed because the Designers are also certifiers. The main bit goes to the private building certifier who goes over it in 5 days then to council for 5 days for approval.

It used to all go to council and could take up to 12 weeks for approval so the new private certifers are working out I guess. It looks like council doesn't trust the plumbing certifiers though.

We are putting in solar electric grid connect systems with battery storage, solar hot water, tons of rain storage, and as of 6 months ago we can actually plumb our toilets and laundry to the rain tank but you have to have a "rainwater management system". That is basically a float value low in your tank plumbed to town water so that your toilet never runs dry. Although if we didn't have town water, which many rural properties around us don't have, would they make you have a second tank plumbed to the first tank? Don't laugh some of the building regs are that ridiculous.

Anyway I wanted to reward your patience with news.

More later
Chris

More good news, CSI technigues and BD Week.

Okay the good news is not very dramatic but still good. Doc Shoozenbootz doesn't want to see me for another four weeks AND he doesn't want blood tests until that time so no weekly monitoring! I've gone from looking at my blood on a daily basis (the 4am vampire run) to weekly to monthly monitoring. Okay I know you folks are going soooooo? But it means I'm doing well enough to not need to be on top of my bloods. It also means I don't need to be jabbed! Granted my Hickaman's kept me from getting some jabs, but I've been tested for blood levels about 154 times in the past 9 nine months. Anybody want to stick their arm out that many times? I sure didn't. I'm so relieved.

On to the CSI bit. I have been wondering about my DNA and got some answers. The Doc must get this all the time because I brought up that I have some questions about DNA and he sat back and said" right you want to know that if you rob a bank and they get some of your blood whos' on the hook?". He was right on the money! The answer is if I leave blood at the scene of the crime they may think it's Rick that did it? Cool eh! If I leave tissue they will think it's me that did it. My sister Melissa asked me about the fact that we all replace cells over time, the most obvious being hair and skin etc. but all things that get repaired are changing. Does this mean I'm slowly changing into my brother? Nope. The bone marrow T-cells can become various kinds of blood cells but they are already diferenciated into bone marrow type cells. The t-cells in your liver are only going to make livel cells, the t-cells in your skin are only going to make various parts of your skin.

There are grand progenitor cells (I'll pause here for the Monty Pytohon fans to go on about the Grand Inquisitor for a minute......finished? Okay) These GP cells can turn into any t-cells but we don't have lots and they are all mine. So that's the deal on DNA.

As a post script I should like to thank any of you that have given blood in the past especially the universal donors that have type O blood . I have been the recepient of about 20 bags of blood in the last year and all has been type O. Besides the red cells they mine the donated blood for platlettes and other cells so each donation helps three patients. Thank you! if you haven't given blood please consider making a donation before the uncoming long weekend.

it's my Birthday on August 8th and I've made it to Age 55! As you can imagine I've been "reflecting" lately and realised as I looked out on the sunny and warm but not hot day this morning that I was really looking forward to things again. I had been positive these last few months but I was taking thi8ngs one day at a time and not looking forward too much. and This morning I had a real flash that I'm thining way ahead. I wat to plant 50 trees on the new property to offset our own carbon foot print. and to provide income in ten years, I want ot get out on the tractor and mow things down with the new slasher that's coming, I want to build our new house! It'sa pretty good birthday week I rekon and bluey is making it grand with little cards and pressies and mysterious giant boxes arriving by mail!

More later (anybody notice my repeated and purposeful use of this little affirmation these past few months?)

Chris

My kidneys are "the best they've been"

2 week old Black Russian Terrier puppies! They are 6 weeks old now and really cute, Three girls and a boy. Jo and Gene are really happy.

For those of you playing along at home you know that my kidney function has been less than perfect (shitty in fact for a couple of weeks) and this was/is because of the imunosuppressant that I take. But we lightened up on the IS about 4 weeks back and last Friday's call from Doc Schoozenbootz was good. Still making my own red cells, they are up a bit further. And he said my kidneys have improved alot. See quote in title above.

So I still have to get off the IS drug and hopefully won't get GVHD, which would be the chronic kind at this late stage. Doc says I have a 50/50 chance but I rekon that as I get lower and lower levels of IS drug then my odds have got to be increasing. Anyway We're going to Bribane to see him next friday Aug 3rd so will report .....

more later.

Chris

I'm making my own red cells now!

well that title pretty much says all the news so .......

Just kidding! A couple of weeks ago when we came back from Brisbane my red cells were at 96 (normal is 140 tranfustions usually happen if I get below 100). Doc Schoozenbootz said i wasn't getting a transfusion as we were close to the time when my red cells are supposed to kick in. I did a blood test a week ago last thrusday but didn't hear from him and then last Thursday and talked to him on Friday. He says the previous week I was at 102 and this week at 113 so I'm seriously on my way. He says my kidneys are okay as well.

Day 129 now, and the the red cells kick in at day 120 ,we were told, so I'm right on schedule. The red cells are the last to kick in so this is a pretty big milestone. The doc still hasn't seen the DNA results to make sure that it the new cells are doing the work now, but he's pretty confident. I have a more sceptical approach and figure that it's not over until the 'fat cells sing'. Or something like that.

Okay fort those of you keeping score. the final milestones were and are.
*get red cells kicked in
*I'll take DNA results for 100, Bob -'What are my NEW cells' ........is the correct response!?
*get off the immune supression drugs - currently down to 5/8ths of what I was taking when I left hospital
*don't get GVHD - Oh come on you can't have forgotten already what that stands for! Say it with me...Old kids help the new kids... Graft Versus Host Disease. At this point if I get it now it means it will be the chronic kind and I have a 50/50 chance at this point.
*get Schoozenbootz to sign me off in about 4to six months.

pretty good eh! doc says that i haven't been reading the book on how to be a patient as i'm breaking all these records. Bluey i pretty happy too.

more later
Chris

115 days on 07/07/07

Well I have lots of little stuff to report and catch you all up on our movements over the week.

We had a great time at the July 1st Canada Day event at the Mckay-Wright's. (shown) That night we met a friend of our friend Jerry McNamara, from Sydney. Karen and her boyfriend Chris were up for a conference and came to dinner on Sunday. It was big fun and nice to be able to host someone in our home again. Monday Joyce went back to work and I took a total break. Tuesday and Wednesday I did a bunch of unpacking and errands. Thursday we travelled back to Brisbane to see the doc on Friday.

Sian and Callum came up with Gene and the truck last Friday and went back with us on Thursday. It was a great but quiet trip back. We had a nice dinner with Bev at the local and then on Friday did the inspection of our old unit and then got intrgram at the clinic and saw Doc Schoozenbootz.

He told us I was doing fabulous. he hadn't seen me inthe past two weeks due to his time off and he thought my hair growth was the best for this time in tranplant process. He didn't give me the reuslts of the DNA test but will later when he gets them off the other computer system. I'll get a blood test on Thursdays and he will talk to me Fridays but I won't go back to him for 4 weeks! We though it was going to be fortnightly but he's gone straight to monthly! he is a little concerned that my kidneys have started performing poorly and has dropped my cyclosorin a little bit. this is the immune system supression drug. I'm now at 5/8ths of what I was on when I came out of the hospital and will over time go to zero (I hope). Anyway this should improve kidney performance and that produces more IPO or EPO which in turn triggers more red blood cell production and that's the last cells that a tranplantee starts to grow themselves.

Anyway the next week bodes well for a commercial bath for Chilli, more truck driving for me, unpacking the last of the boxes and a big big sweep out of stuff. Both Joyce and I have come back with a plan to clear out "stuff" from our life. We have too much stuff and are anxious to reduce beforw we move to a new house.

Our plans are for me to take this time of inforced non work to drive forward the house. I'm doing research on solar electrical systems, solar hot water, energy efficient stoves, funky louver walls, selling solar electrical back to the grid, recyled water systems etc. We get our plans from the steel homes company shortly then take them to the local draughtsman to add windows etc. then on to council for approval.

more later
Chris