well well well

had intragramm today at 7;00am  and had it early incase I needed blood .....

I'm at 113 today!  not only do I not need blood but the doc thinks i'm in spontaneous remission!

holy shit
yep
Holy shit

But...

I knew it!
This means I have to have an urgent Bone Marrow  Aspiration . It doesn't  sound painful does it? Aspiration (something to do with air, light, joyous) Nope it a pain in the butt. Yes I mean LITERATELY. I'm going to do a flip on the bed so he goes for the other hip bone.  It may be easier for him and for me.

Anyway I'm on the way to Sydney to start a trip to the Hunter Valley.  and I'm very very happy.
BMA on Tuesday.

more later Chris
this really is the best news in a year.
co

I've been concentrating

Well I haven't posted in a while and that needs to be rectifiied.  So about three weeks ago I was at 96 for red cells (remember 'norm' is 125-175) and I got two units of blood at that time. They figure that each unit raises your red count by 10 so I left the clinic around 116, that day, three weeks ago. In the past few months I have been dropping 5 to 10 points each week. So a week ago we were surprised when the count came back at 116!  Then I had a test Friday and the count is 118! This is amazing!

It could be that there was a slight good result from the interferon but that was masked by the side effects. It could be that my more active heavy labour around the house since before Christmas is causing a 'demand' that my body is rising to meet. I don't know what is causing it but it is great.

This might mean that there is greater hope that the Donor Lymphocyte treatment coming up in Feb has a better chance to knock out my Fibrosis. Who knows but Doc Shoozenbootzen will know when we see him Friday the 25. Stay tuned.

more later
Chris

After thought

Why is it bad to have fibrosis crowding my marrow.

Thanks for that very good question Chris I think the readers may have been wondering just that. It means several things. The cells start out as one kind of blood cell and this turns into about 10 lines of cells that each have different stage cells in their path to becoming my proper blood cells. The fibrosis stops some of those stage cells from turning into the final correct cell and in the case of my Red cells (carries the oxygen, carries the iron... pretty much the work horse of the cells lines) it stops the final cells entirely now. 

Okay Jim bob I see you are jumping up and down to ask an ancillary question. 

What happens if my red cells aren't there.

Another excellent Question.... I die. But I'm not dead and I am writing this to you now....Soooo how can that be? Am I a zombie getting the jump on the Zombie Apocalypse? ...A very complicated puppet driven by a diminutive red head bent on world domination? No Billie Lou Bob I'll explain it t'you.

The Blood cells (final versions) all have different use by dates then they die anyway so in Billie Lou Bob and Jim Bob new cells are created each and every day. Red cells last about 90 days they are the longest lasting (work horse remember) and I just don't make any new ones so that means a slow decline in my ability to pump oxygen. Except I get lovely bags of "packed red cells" from volunteers that give their own blood to the Red Cross. They sort the blood take out the red cells and match it to me and I get a top up.  Truely the gift of life.

So to my faithful friends that support their blood banks with donations, I thank you from the bottom of my marrow. And to those who are acceptable donors but haven't started Where the bloody hell are you! This of course does not apply to the Mad Cows who through no fault of their own were, fair dinkum in the wrong place at the wrong time. I know you want to contribute but can't. Hey Tattoo people why not hold off for 6 months, Give a pint, then ink up again. Just a thought.

I just realised I'm pimping for blood donations!

More later

Chris

Got my dates!

Got a phone call yesterday confirming that my bro is coming late January for doctors workups and we do the cell switch Feb 5th.
Now for those that aren't playing along at home and want a recap like in the soaps here goes.

Super Bro beside the machine that separates his cells and bags the ones I need

6 years ago Chris's bone marrow cells were a bit crappy so his real brother (not the fake twin they killed off in an earlier episode) came over to Queensland and gave some T-cells so Chris could start a new line of blood and immune system. This seemed to work a treat as his marrow smartened up for 5 years. In an episode in Dec 2011 they discovered that his fibrosis (fibrous growth inside the bones that prevents the blood cells growing properly) was back. this is technically "the Cancer". You know unregulated growth of cells you don't want.  So the writers of our little soap thought it would be good to explore the many ways to ramp up Chris' immune system to fight the fibrous himself. They tried taking him off the immune suppression drugs. Nope. They tried injecting him with Interferon three times a week. Nope. But it was fun getting bluey to stick pins in me though. Now we are trying a new thing. The Bro is coming, The Bro is coming and he is going to give me some of his top grade lymphocytes, It is hoped these will cause me to have a Graft (new bone marrow) versus Host (my body) Disease. Or in this specific case its also know as Graft versus Leukeamic effect. The new cells are part of The Bro's regular immune system and they should target and kill my fibrosis. They may also go after my skin, my gut, and my liver but ..... but I have lost the soapie style.
So our star Chris will be sucking the Super Bro cells about 2:00pm Feb 5th Stay tuned!
more later
Chris