feet who needs 'em

We are at the end of our three week holiday to Canada and the US. I have spent most of th time trying to get me left foot to coooperate.
first I had gout from dehydration and them i was walking funny and my achellies tendon flared up and now that those are better I'm dealing with the tenors/connectors? on the outside being tender. but they are healing and just stiff sore not ripped sore so as soon as get home to my Physio the Queen of pain. (she's just a tiny thing but sheesh can she hurt me). I'll be right in a few days. then its back to the  diggin holes and filling them with concrete.

more later
Chris

oops sorry this is late.

My DonorBro pointed out to me recently at the wedding of my sister that I have left you all hanging. My apologies.

I got the results from my second MBA since we think there was a change and the second confirms the first that my fibrosis is going towards remission! More reduction in the fibre structure in my bone marrow so last BMA was not a fluke. I have how ever put on a few kilos AND my blood pressure is up and I have been ordered to my GP to enact a plan to fix it. I think I can see where this is going and it is not good for this sweets loving boy. I have already cut out beer because it gives me gout and now they are going to put me on ..... A DIET!

I'm going to get back under the house in a big way when I get back and take care of this with reduced food and more work for a couple of weeks then see the GP.

Anyway we are in NorAm again for a wedding in Edmontoon and this week in Calgary and Next in Palm Springs and three days in The Magic Kingdom then I turn back in to a dwarf and finish all the retaining walls so I can get my final permit for the new music room under the House. I have invited a ton of new extended family to visit us in Australia and lots have started planning so I want the work finished so the fun can begin.    Seriously who's kidding Who here, I'm ALWAYS having fun. Its in our motto  ChornyOlinTours: Finding the fun in the world.

More Later
Chris

A funny thing happened at the clinic today, actually many funny things

So first off Doc Shoozenbootzen tried to avoid doing my BMA (remember last two times he has hurt his shoulder because my bone is so scarred from....doing BMAs.) He came by and said I need lunch first and Joyce suggest the med student with him looked strong and he announced the I have the hardest ass in the world!  Then as we were waiting for the procedure the nurse brought in the blood results and Joyce got this strained little voice and said your neutraphils are down to .6. the nurse froze, I froze.

------remember people Netraphils are the big infection fighter. under 1.0 you are locked away in an airtight room to protect you. Normal level is 1.2.

So the silence lasted a couple more deep breaths and all three of us said " Are those results verified ! And we started talking about reason this could be...have I been sick recently, my skin has been more reactive lately, Why are these basocells way high as well. Joyce asked if we were even going to do the procedure with no neutraphils.

So the Kaiterer went off to see the scientist and came back with a smile and a scowl (yes I know its tricky to have both at the same time). Apparently the scientist said "oh yeah we thought that was way off so I did a visual scan and the real deal is way different", Neutraphils at 6.58 and the basophils down to normal. He said "we usually reprint the sheets for you with the revised levels but we forgot". The Nurse asked if we could get it now  "cause we have a few heart attacks going on!"

So when the Doc came in Joyce handed him the original sheet and asked him if he thought there were any issues. He paused about half a second (yes that is not hyperbole he is clever and fast), and he said "that's wrong. The basophils are the giveaway". So we looked at the real sheet and I have normal everything except the weird non important ones that are off because I have no Spleen (newbies note: Go back to December 2006 to see about that giant sucker coming out).

So we flipped me over and he prepped the left hip... at this point I succumbed to the dazzle and don't remember any more but it was reported to me that it was way simpler and easier and I can report that it seems to have left me less sore as well. Bluey reported that there was way more aspirate and it covered way more slides and that the Doc said that it was easier to get the aspirate out. That means, unofficially, that I have less fibrosis. Yes!

We won't get results until next 8/11/13 so cross your whatevers until then.

more later
Chris

Still trucking

What does chromosome 13, clones, Karotypes and16  of 22 cells not dividing properly have to do with me?  I don't have a clue either!

Doc Shoozenbootzen put my results up on his big screen and we looked  at my rsults from BMAs past. Before my transplant I had no deleted 13 but when we did the BMA in November of 2012 when my fibrosis came back, there it was (wasn't) and we only cheecked 2 cells this last time so we need to keep an eye on it with a FISH test at the next BMA. The bma at the recourrence also showed the 16 of 22 cells not dividing properly. So we need to look at THAT.

I know! WTF I just focused on the blood results that are STILL normal and ignored the rest. His mnner was 'things are great' and maybe this is a good time to tottally confuse the Patient. There's going to be some serious googling in the next few days. I'll fill you in when I get it sorted.

Yesterday was my birthday and we talked about how we can starting planning for what our future might be like. I hadn't realised I had been holding my breath for two years. Any way we are finsished the inside of the new room under the house and our first event is going to be Barnett Road movie night. Then some house concerts We think and maybe some house guests, we hope.

more later
Chris

Great news!

Somehow that title still isn't big enough. We Skyped with Doc Shoozenbootzen on Friday to get the results of my latest Bone Marrow Aspiration BMA.

" The Fibrosis is greatly reduced" " There is still Fibrotic tissue but that's may be evolutionary"

So the treatments may have worked back to the Interferon but they just took a lot longer then expected? Don't know for sure.
more later when the blogger software is working better.
Chris

Sorry I've been doing things other then blogging.

So my last blood test was two weeks ago and I was 131 which is still in the normal range. That's amazing since I haven't been in these areas for 18 months. I last reported 134 and then a week later it was 131 then 125 so this report of 131 reverses that trend downward. I feel good not out of breath so I'm guessing I'm good. I haven't had a blodd test more recently because I am in Canada visiting family. I fact we had dinner with my Donor Bro, his two sons, his daughter and her boyfriend. It was very good but my nephews tower over me and have turned into men now.

We had a wonderful time in Kelowna where we caught up with  great supporters Jim & Irene Cronin. I emailed back and forth lots with Jim when I was in the hospital getting my marrow swap. He had good info about physical fitness and other stuff and generally just kept me from thinking too much. We got to hear how their kids and grand kids are doing and caught up a bit about old times as Jim and I were pals in High School.

Tomorrow I get another go at my nephews and nice
(yep its a happy accident but she is a nice niece) and we get to have brekkie with Mike and Gayla then off to the Mickey Mouse wedding of the century in Seattle.

I feel fine except for my blasted foot had gout. That's gone but I was limping so bd I screwed up the Achilles tendon. It is getting slowly better, but.

more later

Who's the best blood maker on the Planet! Just saying...

I just found out that, here in the 21st week without transfusion, my red count is 134. That's normal and I haven't been 134 in over a year. I feel pretty good.

More of the same...all good

So it's been 16 weeks since my last transfusion.

Still a mystery but no ones talking about it any more just "your bloods are excellent" then on to other topics. I, on the other hand, would like to know why.... It's the geek scientist in me I guess. I just have to be happy with "Every patient is different...".

So I got my third batch of DonorBro cells; this was x times 9 concentration.

 I have a cold, the second in 4 weeks and I had gout last week but nothing connected to GVHD.
----- pop quiz :What does GVHD mean? Yes that's right Graft versus Host Disease. Where the new immune system in this case bolstered by the Donor Bro's Lymphocytes attacks my own body because it sees my body as foreign to its self. Also in this case we hope that the immune system will rear up and attack the fibrosis inside my bone marrow. ------

So no sign of that yet.

In unrelated news the downstairs addition has plumbing roughed in and electrical due next week. Plaster boarding the following week then water proofing, tiling, painting, final fit of elex and plumbing and its done.

More later
Chris
PS I just miss spelled my name hris and it auto corrected it to Harris not Chris weird eh?

Things are a burbling....

Okay lets see its been 15 weeks since my last transfusion.

two weeks ago nearly I got told my third batch of the DonorBro Cells were getting postponed because my "kidneys were crap" AGAIN. (good now though) so I of cousrse didn't pay much attention because sometimes I'm just like other humans and I'm a BAAAAAAAAD Patient. Anyway I didn't twig to what else may happen so I worked at rehydrating but maybe not fast enough.

I get to working out side and forget to drink water, I take breaks and drink.... but around here at my sweat rate, you have to drink every 10 minutes or so. Anyway...

The week after on the Thursday I start to get a pain in my foot. Gout brought on by dehydration I guess but still hurts so I'm hobbling around on more drugs. Saw the local Doc and sawThe Physio. My Physio is this tiny lady who can lay  a giant man to the ground with one or two fingers applied in the right spot so I was surprised at how gentle she was. It s still hurt like freaking hell but she was pretty gentle..... for her.

Staring to feel better now and that's good as we are off to

12 weeks without transfusion

Okay its totally freaky but I'm making red cells like crazy. My last blood test results, last friday were 117. Admittedly that's down from the 127 the week before but still its good. Still no medical theories as to why... well there is my theory and  that's 'I have made a demand on my blood, from the work under the house, but that's not very sound science.  But then again there are no other theories put forward at this time so that's the current thinking!

We got the go ahead to plan a trip to NORAM from Doc Shoozenbootzen.  We have worked out time frames so we booked tickets. June 17th leave and back on July 10. Time in Calgary, Oysooyous, Kelowna, Victoria and Seattle. So John and Cathy, Rick and the Kids, Marge, Heather and Nick, Jim and Irene, Jo and Rick, Peg and Lynn can expect a visit and Joe and Gabe can expect witnesses to the wedding. Joni,John,Marlene and Nicole can expect guests. Calgary supporters and friends can expect a party.

Unless we change our mind then its all up for grabs.

more later
Chris

Its been six days since I got my donor Bro's cells (Sung to the tune by the Bare Naked Ladies)

So six days and I feel fine, no sign of GVHD yet.. Who know maybe these Lymphocyte cells are not yet kicking butt. I feel great though. Got lots done on the new stuff for the Big Knock. Am getting ready to launch the new stuff but I need to get some people rev'ed up first. I have a knock cooking as well but my sister in law told it to me and I can't remember the details. So I either have to do a sense memory thing to try to remember........nope .... or just call her.
more later
Chris

More Cells on board

Went down to Brisbane yesterday and got another batch of the DonorBro's cells.  I get them in increasing amounts I think I got 3 times the first lot. and next is 9 times but that may have been some thing I remember about something else. Any it still wasn't a huge amount  because as they were flushing the little bag I realised the cells still hadn't got down the tube into me yet. That happened on the second flush and almost immediately I was breathing out the chemical that they use to cryovac the cells with and it smells like 'nibbles corn' according to Bluey!

Got blood test results and I'm back up to 117 that's ten weeks without transfusion which is so excellent. No sign of GVHD yet. Remember we want a little of the Graft Vs Host Disease so it attacks the Fibrosis.

More later
Chris

More good news

So its been 7 weeks since my last confession ...opps I mean my last transfusion.  and we got the latest blood test results last night about 6:30 PM from the the hardest working practise nurse in the business.

She is really nice...... What?.... You don't want to hear how nice she is, you want the results Right NOW?..

Okay so she is hard working......

Just kidding.

120!

Yep that's not DOWN.... that's not even EVEN...... that's UP from the time before. I am seriously making my own cells. Wahoo!

That is all
more later
Chris

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