Did I tell you......?

I got my results on Friday ....the results from the blood test done before the donor Bro's cells went in..... my regular results....They were at 116!!!! That's 5.5 weeks with NO drop in cells. Do you know what this means?

It means that since the blood cells are always dying off and being replaced in a normal person you are always making new cells so that you levels are relatively the same from week to week. My plateletts are up to 200 from 25 when I was getting off the interferon. And I have been consistently needing red cells for 9 or 10 months now. The usual thing was a transfusion, then in a week it might drop to 115/110 then down to 110/ 105 a week later then by the time I got to Brisbane after 4 weeks it would be at about 90 once it was as low as 79. But not recently. I have been at 114 to 116 for 5.5 weeks with out a transfusion!!!! So weird is this that Doc Shoozenbootzen did a BMA Bone Marrow Aspiration (dig a trench in your hip bone and use a garden spade to remove a small sample) and my Fibrosis (cancer) is still there, not reduced. So even though the fibrosis is still there and it reduces my ability to produce red cells I still managed to produce them???  Strange days indeed.

more later
Chris

Cells are in

I had the injection of Lymphocytes this morning. They required that I have a whack of premeds...Hydrocortosone and Phenurgen and panadol, in case I had a reaction . All that happened is I got high and drowsy and stupid. Then they brought the cells in an no reaction on the visible scale.

I wonder if the Donor Bro was disappointed. He might have been hoping for the little cells taking on the Fibrosis cells in an epic battle of turf wars... where the battle ground gets torn up and I twist and turn and flip over from the action going on inside.

Maybe I should read less epic Scifi?

Anyway we just went out for the Donor Bro's pick of Korean for our last supper together this trip.  He wants to play down the 'hero for doing this... chit chat' but does want other people to know that it is relatively easy to make this donation and to make a stem cell donation and that many others should be on the register to donate.

We got interviewed for the Brisbane Courier - Mail in the Parallel Lives section (weekend?) and they sent out a photographer this morning. All the nurses were walking by wondering who the celebrities were. We didn't have the heart to say 'nobodies'. Anyway it looks like it is going in the Sunday Mail newspaper Bluey has found out on the inter web.

What this guy beside me is doing looks good so ...

We travel home to the red dog and the gardener tomorrow and more work under the house.
more later
Goodnight
Chris

not the news we hoped it would be.

So the hunter trip was great and we tasted lots of wines then we picked up the Donor Bro and I had my Bone Marrow aspiration. Couldn't have it on the other side so its the right side again its all healed by now a week later.

Got the results on Thursday. There was no indication that the fibrosis in my marrow was reducing so no spontaneous remission.  boooo. oh well on to Plan B.

What's that dear reader? Why did I have higher blood counts?  Why were my counts higher then before the Interferon?   NOt sure.  Doc Shoozenbootzen says that not all the cells came unmasked after the interferon stopped at the same rate so the red cells just started up but later then the others. He didn't say my hard work theory was wrong just unproven.

So we are back at the Royal Brisbane and Women's Hospital to watch my brother give his Lymphocytes and later today I get shot up with them. I must stop here for a minute and remind the reader that there is an "and" in the hospital name. I am not in the Women's Hospital but the Brisbane AND Women's Hospital.

So will go up later and check on the Donor Bro but blogging for now.

Oh we met a lovely lady and gentleman last night.  I'll call them Mrs Sparkles and Mr. Not Retired from WA. Wonderful people so kind and empathetic they run the Honeymoon Hill B&B in the Margaret River and you must go out and see them. http://www.honeymoonhill.com.au/about.html.
more later
Chris

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