Happy New Year

Well its a new year and I mean to finish as I started.... that is, in my case, being alive.!

But I think I may dispense with some of the issues I've had lately.

We had a very interesting trip to see Doc Shoozenbootzen and to fill up with intragam.

First off you will remember that I have been getting a top up in red cells for many many months and its been about every four weeks, then you will be very surprised that I needed blood one week after getting two units in Hervey Bay. One week ago in if fact on this very day. Yes I had gone up but nly to 95 from 89 two eeks earlier. I think I must have dropped to the 70's again inbetween the blood test and the reciving Hervey Bay blood. Any way the Dr laughed so hard when we we telling him the story about Hervey Bay and Bluey said " it would have taken less time to drive to Brisbane to get blood!". He/We are going to look at trying to get into the private hospital St Stephens that have an Oncology Day Clinic. The Base Hhospital at HB has an oncology day clinic as well but I'm going to give it a try after lasti time. It would have been the appropriate spot but they used a regular hospital bed/room/resources etc.

Anyway the blood took three and half hours to get to the clinic and then 3 hours to infuse the blood plus the time already spent. Arrived 10:00 am left 6:00pm but at least I left, eh? (Just a reminder to my Canadian friends that even though I have been here for 16 years I can still talk the talk.)

Lots of laughter yesterday we had the English bird who as usual was in top form. Motorcycle mama made many humurous inputs and the Scottish queen go my to kiss her hand. She really is out of control!!

But now to the news.
My white cells, neutraphills and platlettes are all way up. so the interferon was keeping the rest of the counts down and stopping it was a good idea.  the Plattlets were up to 100 and three weeks ago it was 25 so that's brilliant. The Reds were still down and that's because of the fibrosis in my bone marrow that prevents the cells from developing properly.

We talked about how things in the treatment plan are draggin out a bit but he reasured us that I could go a long time just getting red packed cells and just crusiing along. He warned I may be building up iron. If fact he made a note to check it next time we are together. He's going away for three weeks now so will be back by the time I am scheduled. In the meantime I'm to do a blood test in 10 days and then talk to the Practise manager. Deb. about fixing up the Hervey Bay Transfusion stuff in case I need it.

I also have been having ulcer type pains for a month now and they have been getting worst so I'm going to get a scope out.  and acid reducing tablets.

The big news is that he  is concerned that in three months if the donor lymphocytes have not worked we may be facing a new transplant with a different donor. My Bro is just too good a match and there was no Graft vs Host Disease last time and thatw what is goin to attack the fibrosis to keep it under control. So an unrelated but matched donor will be better because there is likely a chance of more GVHD. There is also a higher risk of fatality from GVHD.

Heres where Bluey and I heard slightly different things. She heard the second transplant is very dangerous. I heard the second transplant has higher risks than the first one did. We could go on an on with me just getting blood every foour weeks or taking a chance on a cure by doing the second Transplant.....but this conversation will take place at the end of April.  Not now. So every thing is just peachey.

It was really very good because of the just can go an go. This means we get to go to Melbourne for that concert Joyce wants and we can take small trlps inbetween the blood infusio

starting to understand the crisis in health care.

Okay this may be a long entry.

I'm documenting my time trying to get blood in Hervey Bay.
We thought that since it was Christmas we would try to get blood here rather than travel to
Brisbane.  Doc Shoozenbootzen's practice manager sorted out a doc up here to admit me. He will for all time be the shock jock  or doc jock. Anyway I have never seen him or talked to him. His assisatant talks to me and is very nice but never has given me their location or their phone number, I have to call into the Hospital switch to get to her. So first off they got me in to do the crossmatch blood test on Monday for blood on Friday...no has to be blood on Saturday. I said are you sure you can take the crossmatch blood more than 3 days before? they said yes. I asked the state pathology tech the same question she said yes. Its a rule at my regular clinic and at the regular pathology people that it can't be more than three days old.

So I get a call while on Fraser Island ...actually several calls but I couldn't call back because the phone number is blocked... anyway on spec I call the lady at the hospital who says yes I was calling to say you have to do another blood test for cross match Friday. Dooh!

I come Friday do the test and phone her back ( Remember I have to go through the hospital switch every time), and ask her some basics like what time?  Don't know the "bed lady" was trying to get me. Where? The medical ward. Huh. I have to be put in a hospital bed! The bed lady never called so had to call back again and she was gone home so put on to the ward clerk I guess. I'm guessing about all this because no one would say names, give phone numbers etc. anyway was told to report to medical ward at 9:30am. because I have to get admitted by the staff doc and they start work at 8:00 am but won't be able to see me until then. as we arrived on time were hopeful. I'm puzzled why we have to waste this staff docs time when my consultant and Doc Jock have both signed off on my need. but am told the staff Doc has to order the blood ..but the blood has been ordered and in fact i know its at Pathology already!! The staff Doc has to order it be brought over from Pathology!!!

20 minutes till someone came in to say 'hi and someone will be in to see me' in a few moments. 10:00 rolls past and a nurse starts to canulate, dramas as usual but its in as doc drops by and we're off....

Nope it wasn't until11:00 til they brought blood in only to
discover the doc hadn't done consent form. five people are now in flurry to get forms etc because blood can only be out of fridge for 1/2 hour.  Now I'm thinking its going to be out for two hours while infusing so whats the big deal but I don't say anything because we are finally seeing some speed. 11.45 I start the blood pump and its now 1.30. Four hours to get 3/4 of one bag into me. second bag queued up though. My nurse today is very nice and competent.  asked her why it seems so hard and out of the ordinary....they never do day bloods here!!!! why am i here? dont know. day bloods are usually done at the oncology unit down the hall!!!!! WTF???

We have decided to re-explore this Hervey Bay transfusion again from scratch with better knowledge about what can go wrong but do it in the first week of Jan when I don't urgently need blood.

Anyay I have asked for my blood results twice and still have not seen them. three times while editing!

The food was edible.

What a waste of tax payer funds. to all my queenslander pals i'm sorry the system is so wastefull hope no one really sick needed this bed.

makes me really appreciate the staff at my regular clinic

more later
Chris

That's better!

Platelettes  are up! So we stopped interferon last week and already the cell counts are up. Reds are at 101 that's down but nowhere near as much as expected.  Still waiting to hear when the infusion of donor lymphocytes is going to happen. 

More later

Chris

Some news...ish

I've been a bit slack about a lot of things digital and its time to catch up.  I will talk to the doc later today about the blood test last wednesday but I'm hopeful but more about that later. Lets take you back a week to our last trip to Brisbane. Bluey N I took the Bruce again and got in with only an hour of chair wait. One may wonder how they can get backed up at 10:00 am a whole hour. But you don't say anything cause you are a patient patient.

Got in and its just intragam. so no premeds just shove a needle in the vein and bang it in. So we were done in an hour and a half and then on to see the doc. Oh we had some serious gut busting laughter in the back this time. I swear they hire comedians and then train them as nurses!

Doc Shoozenbootzen stopped the interferon officially declaring that route as a dead end. The silver lining is that a side effect of the interferon is suppression of some blood counts. So... I should get bump up as a result of stopping it! Yay!

I do feel a little less out of breath but that could be just in my head. Then again lots of fun is in my head so lets party!

more later
Chris

Saturday morning Reds

Well its about red cells so it can't be called the Blues. ... But then red heads are called bluey here so..

Anyway the docs are puzzled. I was down in red cells Thursday so got blood organized for Saturday. Blood test then showed I had dropped another 10 between Thursday and Saturday. They are looking for places I'm leaking!

I'm thinking it errors in testing etc. but will be watching for leaking this week.

more later
Chris

need red cells

So last Friday Doc Shooozenbootzen mentioned that the protocol for my Lymphocyte infusion will be a bit different. Usually you get a bit wait a month get a bit more wait a month get even more...bigger doses each time.....
Because I tolerate the intragram I get monthly and I tolerate the packed red cells I get from time to time, really tolerate them well; I'm getting all the Lymphocytes in one go!.
That's got to be interesting?

Also last week my blood wa down a bit more then we usually see at this time in my cycle so he got me to do a blood test last tuesday and Skype him Thursday, today. I'm down even more and it won't wait till next week so I'm going down Friday Arvo for blood on Saturday at 8:00am. This is good because I won't need as many units and that will be lest time in the chair and I'll feel more puff a week earlier.

Our Friend the Rain Goddess is over visiting from Canada and her boyfriend the physicist is coming early in Dec so I want to be full of the Reds so I can go up to Hamilton island and play.

Taking more naps lately so I can be active. That sounds like a non sequiter for sure.

Queensland Leukaemia Foundation has organised an interview about the Big Knock and my story with the Courier Mail, if they pick up the story. I'll keep you posted.

More later
Chris

Timeframes

Well I had a long phone call with my brother the donor today. He has a number of things going on and would rather come in the second week of January. If they want it sooner maybe a scientist would go over and collect the cells. But if required he would come over in December. I'm leaving it up to the transplant co-ordinator and my doctor to sort out.

I did find out what the protocol is for Donor Lymphoscyte Infusion.

the Bro will be here for almost a week doing blood tests other tests and physicals (some more done before he gets here). There is a pile of paper work to do as well. Then the day they take the cells he is in a chair for many hours and at the end of the time I get my first infusion. They frezze the next three infusions and I get them every 4 weeks for 4 times. I should get Graft Vs Host Disease after the second or third infusion and depending on the severity, the program stops then. Then they get me coasting with GVHD and that takes out the fibrosis in my bone marrow that is keeping me from producing good blood.

Cross you fingers
More later
Chris

DLI

We had a 3 minute Skype call with the Doc and he had no blood results but had the decision from the transplant team. On to Plan B and that was to do Donor Lymphocyte Infusion (DLI ) with my brothers Lymphocytes but NOT take his T-Cells(the ones that are used for Bone Marrow Transplant ,BMT) again. If the DLI doesn't work then we would move to Plan C variation 2 which is a BMT with a registry donor, not The Bro. This is because we are too compatible, it appears. Who knew?

DLI is way less invasive, way more compatible and way less likely to make me feel sick. So bring it on! We asked when this might take place and got told to talk to the Queen of Transplants, so will call her Monday and let you know what time frames we might be into.

The Rain Goddess has arrived from Canada and the drought has been broken once again. She heard I was in here doing a blog entry and offered this gem of advice. "Don't use Acronyms and when I type out the medical term it doesn't make it any clearer." So I'm going to do a page attached of terms because I thought that if I explained DLI every time I want to write DLI you would get BORED TO DEATH. And I thought that if you do a search on the blog you will find every term has been defined at least once. But see what a good thing feedback is!

If you don't understand something Please feel free to make a comment and I'll explain. I can't make sense to you if I don't get feedback on what's NOT making sense.

more later
Chris

I found out! its Beethoven's Fifth.

Not his fifth drink silly. His symphony.... the first four notes of his symphony are the tones to indicate dread.

da da da daaaaa.

Got it now?

Today is the day I find out what my life will be like in the next year or so.

Sort of like waiting to hear about a job or waiting to see if you got into Uni. Or a bit bigger than that I guess.  You know you are up against it when in all those other situations, if if comes out wrong you say "Well, at least I've got my health"..... hmmmm.

Have to find out what time my Skype call is this arvo.

The good news of the day is I have rented a dingo!

more later
Chris

What I find out when I'm asleep... or am i asleep?

Okay sedation is a weird thing... I think I'm asleep but apparently I'm hilarious so this time I asked the Doc for a cartoon hammer so he could knock me out, and I tried to get my phone out of my pocket and Bluey had to restrain me cause I wanted to record what the doc was saying.  That was a good idea, Out of It Chris. Because you have no idea what he said until Bluey feeds it to you over the next couple of days!

So here's what he said (but I won't be able to swear to it!) First off he had trouble getting the tube drilled in and through out his shoulder. Discussion at the time about his lifting weights, discussion after with Bluey about getting him to work on the other side because of the room layout he always picks the right hip.

He got the sample and they took extra blood to do a Klienerism test to see if my donor's cells are still there. If there is enough of Rick's cells then if would be worth getting him over and taking his Lyphocytes for the DLI and then keeping him here for a week and harvesting his T-Cells and freezing them for a BMT later.

If there are no enough  of Rick's cells then its not worth doing the DLI and that in turn means its not worth bringing Rick and they would find a registry donor to do a BMT in 3-4 months. That's the timeframe due to waiting lists.

So he said we should plan to enjoy Christmas and to travel but not overseas.   I might get DLI before Christmas, but that is just an injection when I'm at the clinic.  We won't know about any decisions until next Friday at the Skype call.

So my life may be complicated again. We are starting to think about where we could live in Brisbane in Feb,March,April and on for 6 months.  Bluey will once again be the super hero  and I will just sit around doing what I'm told.

There are a whole bunch of question about the different donor but I will leave of the line until we know thats what is planned.

Hope that helps keep you all in the loop. Sorry I haven't got this down sooner but it all could just be a dream.

More Later
Chris

my Blood screaming from my body when I come down here!

Okay its weird. I was at 124 Three weeks ago. Normal levels of red cells.
Two weeks ago I dropped to 114... big jump for a week but still not bad. One week ago -104, still good but its down a bit. Then two days later it 102 ....Wednesday its 94 Still like it nice an high for the trip down to brizzy and I FEEL like its high so looking good for Today. In fact we cross matched for three units and I'm skaiting that I may only get one or two units today. Blood comes back and in two days I have dropped to 80. Around here that known as double crap piss poor.

So I got the two units they pulled for me today and I have to get another unit tomorrow. Besides Bluey has the signs of flu so we have abandoned plans to join family and friends at the Boona Pub for dinner. I will get my blood at 9.30 and then we head down to Boona to celebrate the engagement  of Gabe and Joe.

Add to all that the doc threw out his shoulder getting the bone cut done and the marrow was sticky. I will get the news of results and the hospital board plans for me next Friday. But its looking like trying the DLI first then a transplant early next year.
more later
Chris

How do you write that four note bit from the some classical piece that means oh oh something bad coming.

you know da, da, da, daaaaaa

Any way I'm so looking forward to Friday....NOT

That is all for now.
more later
Chris

Well its interesting that we know the outcome of a test not yet done!

So two Friday Skype conversations with Doc Shoozenbootzen  have both ended up similar. "Your blood has not dropped too significantly but I don't think the Inferon is working, but we'll see after the BMA but I don't think there will be a reduction in the Fibrosis, but we'll see after the BMA and then we will take your case to the hospital Transplant board but I don't think the BMA is going to show improvement...but.."  Looking like I'm for another transplant but we won't know until after the BMA and then see what the board says.
more later
Chris

A comment about comments

Tips for leaving comments on posts
Tip 1. Don't leave a list.... they get weird.
Tip 2. One Dot : this is the period/full-stop/dot, looks like this ".", it means yep I read it. sort of neutral but tells me you are looking.
Tip 3. the plus sign One Plus looks like this"+" It means read it and like it!
Tip 4. the minus sign One Minus "it looks like this "-". think of how much fun this will be!   I'l be all "Are they sympathising with me about bad news? Are they jealous of good news? Are they critiquing the writing style? too long? too short?"
Tip 5. hmmmm.....Don't use tip 4.
Tip 6. If you don't want to sign up to blogger, you can use your google ID to make comments or some other IDs.
Tip 7. You can make anonymous comments for ease and speed of making comments.
Tip 8. If you do leave anonymous comments please put your name in the body.
Tip 9. Problems?    Do a google search for ' can't make comments on blogspot'. They usually involve your own browser settings or your own privacy settings. It may be because you have pop up blocker turned on. You should be able to check 'allow for this site' to fix.
Tip 10. hmmm ...see I have nothing for the tenth tip.....see Tip 1!

I was a bit grouchy at my appt on Friday

It could have been the pain in hand from the cannula, the pressure of taking on the intragramm and five bags of red cells, The fact that was a chair wait to begin with and that we didn't get out till 7:45 pm after getting up at 5:30 am, the fact that I was tired to begin with...... Anyway I'll try to do better next time.

Yep I was down to 100 from the previous Friday's blood test so on the Skype call with Doc Shoozenbootzen so he pre-ordered a cross check of 2 units of red cells so we would not have to wait on Friday. When we did the blood test Friday AM it showed I had dropped to 84. Remember that 'normal' is 140 down to 120. Anyway he ordered a third bag of packed red cells. At least we had hours of intragamm and the first two units to keep us busy while they cross matched the extra bag.

We had been really happy because I had not dropped as much this month and then to find that I dropped 16 points in a week was pretty pissy. It doesn't matter that 84 is about right for me over the last few months. I get filled up and then slowly leak out the red cells of the following 4 weeks. It was just that we had started to hope and then crash. But hey that's Myleodisplastic Syndrome for ya!

So late in the evening Doc came to talk to us and shared that he believes that the interferon is not working. There is no signs of Graft Versus Host Disease (GVHD) and its been 10 weeks. We have a Bone Marrow Aspiration (jab in the hip bone to examine the marrow directly)(BMA) scheduled for next appt Nov 2nd. But he expects it to show no reduction in my fibrosis ( cell scaring that clogs up my marrow). So at that time he will take the tests results to the hospital Transplant Team for a decision. He presented what might be some of the options they will discuss. In no particular priority order.....

*Get my donor, my brother to come over and suck out some of his Lymphocites and then juice him up with Growth factor, wait a few days and then spin (apheresis) out his marrow cells. Give me the Lymphocites immediately and freeze the stem cells. See how I do on the Donor Lymphocite Infusion (DLI) and then if I need to, later do a full Peripheral Blood Stem Cell Transplant (PBSCT)(also called, but technically not the same, Bone Marrow Transplant (BMT).

*Go straight to the PBSCT

*Get a different donor. That sucked some of the air out of rooms around the world. Yep apparently some of this current issue is that I'm too good a match with my brother and that's keeping the GVHD from popping up and we want a little GVHD. So to this end Doc will canvas the Transplant Queen to do a paper search for donors in the registry to see what they can find out ....am I common or rare. At this point Bluey cracked up.

--------remember: the spleen regular or large ....... JUMBO.
                             the Gall bladder, regular problem or stone stuck in the bile duct......rare giant stone!                    
                            my skin issues, just regular ichthyosis vulgaris or .........rare X linked ichthyosis! -------

Its pretty for sure that my tissue matching will be rare based on the previous history but...

I was starting to get comfortable with the idea of another Transplant and I even started thinking that it would be a snap as I was already half way there with my brothers cells so it would be even easier to tolerate the next time. This, Doctor Bluey informs me, is not necessarily the case but a boy can fantasise can't he. Anyway, maybe now thats out the window as they may want to increase the risks by doing a non allogenic (not my brother) Transplant. More risk = more chance of GVHD = more chance of all the bad things I saw others going through around me at the transplant ward. This is not a good development.

Of course its going to work out brilliantly for ME because I always get the luck. The big spleen, gall stone and skin issues have got to pay off someday... Why not on Transplant day?! Yahoo... bring it on.

Oh and timing? Could be before Christmas. Welcome to my world.
more later
Chris

Talked to Doc ShoozzenBootzen last evening

And he said....

But first a word about the one-sided-ness of this format. I've been handing out this URL address to everyone from the papers, TV, Luekaemia Foundation, to the 400 likers on TheBigKnock etc. and yet I don''t see any comments lately. Even from my fantastic niece Regan the Angel. I opened up comments to anybody a while ago so that I can hear back or at least get some idea that anyone is reading this.

The One dot Com campaign. One dot to Communicate.
Okay I came up with title but there is a company in South Africa with the same title so I'm going to have to have a think but here's the idea. You hit the reply button and type one dot, one full stop, one period (how can the smallest typographical symbol have so MANY names??)
I will know you have seen the post. That's it. Just the merest of gestures that means "yes Chris I see you"
--------okay did anyone else have  a little vurp there? sorry------

Back to programming previously planned.
He said that my reds are not as low at this point as they have been in a similar period in the past. I'm on 100 as of last Friday and I will get packed reds this coming Friday in Brisbane. He also said that the interferon is most probably now contributing to the suppressed cell production.

Great the cancer cuts the cells and the cure cuts the cells. Does anybody else think that's crap?

At any rate I know for a fact that many many people have started or restarted giving blood recently and many of those have said its because I have reminded them its a good thing. If this treatment continues like this I will be very selfishly asking even more people to give blood. At least my demand for blood product has dropped a bit this month. Please people don't get into car accidents,  I'm hogging the supplies. Its time for more red cupcakes to the local Red Cross clinic, I guess. "Dear blood donors thanks for all the good juice.... Sorry I'm such a greedy guts."

And he said that no, we won't look at the results in 6 weeks, no, not at 8 weeks but now we need to press on to 3 months! Specifically we have a BMA scheduled in another month from this Friday which is in fact 14 weeks. I'm not sure about the new Math but 3 months should be 12 weeks I think.

Don't even get me started on BMAs. I'm getting used to them now and I fall 'asleep' right off the bat but remember, under sedation I   just    don't    remember.    Bluey has to hear me whinging and complaining about the pain. " You know I can still feel that?" "You know that hurts?".  Amusing to some but it has to be wearing a bit on her.

At least he wrote out a script for blood cross check for me to do today so they have it on hand for Friday. That usually takes a couple of hours and if they wait to do it on the blood I give first up each month then we end up just sitting and waiting. Last time I got disconnected and we went out for lunch.

Mind you we had a nice visit with the excellent friends and owners of the Little Prince cafe in the Princess Theatre across from the Mater Hospital. I can totally recommend this place for coffee and caring. Tell them Chris sent you.

Blood typing and matching 101. Besides your blood type A,B,O AB etc. you have Positive and Negative. But on top of that you have something like 250 other antibodies etc that they may try to match. In my case my blood type was B Pos and my Brother/Donor is A neg and I'm somewhere in the middle... or not.... or screwed up. Anyway I need type O (universal) neg and its needs to be iradiated as well so they need to reflect on all the blood samples to try to narrow them down, then flash it and ship it to the Clinic. When you think of it.... its a miracle that there is any available for me when I need it. It just happens and we know that its a lot of work... So another thanks to the Red Cross, you are amazing.

Okay I'm off for my blood test
more later
Chris  ....remember One dot Com!

what shall I write

Some very kind friends have asked after me via a third friend so I thought I better get off my blah butt and write something.

Well I have been taking interferon for 10 weeks and have developed some side effects but not sure about therapeutic results... I guess we will find that out next week at the Telemedi appt. on Skype on Tuesday or when I see him on Friday in person. I get dizzy a bit about 12 hours after each injection and ... wait a minute it used to be about 24 hours after the injection so that's different. but it lasts about a day so I have a day with no dizzyness and a day with in each injection cycle. The Doc told us that reduced red cells may also be caused by the interferon (or my bodies reaction to same) So I wonder how we determine if there are any therapeutic effects without stopping for a bit. May have to have  Bone Marrow Aspiration to look at the marrow....Oh Joy.


We were in Tazzie for a week so I got a blood test at the Smithton hospital by two very nice nurses that had to have three goes between them to get the blood and then it wasn't with the Doc when I talked to him on Skype last Friday. so he's asking ME how I feel as to my red level. I Felt good then but not so sure now. He's away with his kids as its school holidays so I didn't talk to him yesterday but will again on Tuesday and had a blood test Friday in prep. We'll see I guess.

Tazzie trip was amazing. We were celebrating Jo's recovery and snuck a trip in for me before any more treatment I may have to have. We went to Sydney to see Gene's sister Jacquline Mabardi sing the title character in Aida...at the Opera House! She was so powerful and sang beautifully and the wig was pretty interesting. We got two hours sleep after joining her for a bite a drinks after the show and getting up very early to go to Hobart to the Salamanka markets the next morning. Spent three nights in chalet in New Northfork with a side trip of a bit of the Central Highlands on the west side. Then up the middle to Stanley for two nights then Launceston overnight and out to Brisbane on the Friday. Then Jimmy Buffet Friday night, young friends Jason and Caitlin's engagement, Bev for a day and then early Monday back to the Bay.

I just realised that I should be tired! I was feeling tired all week and did not get much done around the house but the week before was a lot.

Doc Shozzenbootzen is starting to be amused by our Skype calls. and waits to see 'Where's Waldochris". He likes the mask collection behind me on our den. But we have been on Fraser Island with the ocean behind me..... Two weeks ago we we in the restaurant at the opera house so that was the back drop...the OPERA HOUSE! Then last week we were in the Botanic Garden with margarita's waiting for the Jimmy Buffet concert and the back drop was hundreds of parrot head fans in costume! he should be paying us for this calls!

www.facebook.com/TheBigKnock is going great. we have 30 on the books but we are missing bakers in Campbell River, Harare, and Townsville. have a look.

More later
Chris

News Flash

I made red cells this week! In a Telemedi appointment with the doc just now we found out that I went from 109 last week to 115 this week so that's brilliant!!!

But He says not to get too excited.

But that's brilliant!

okay be cool.
more later
Chris

Monday's are a good day

Okay lots of news so I'm making a list so I don't forget anything
Interfer with my life New symptoms
mondays best day
need red cells locally
now 12 weeks to know
What's the Bro doing?
Splinter and my new career as a sonogramist

TheBigKnock

Okay so lets get the whinging out of the way first. My three times weekly injection of Interferon is getting up my kilt.

The injection is superbly handled by Bluey each Monday Wednesday and Friday night and hardly hurts at all. But I'm starting to get some additional symptoms like dizziness on some days. Not so much that I can't function but it makes me feel off.

So because I get an extra day off ....Mondays before the injection are pretty good days.

I'm getting a referral to a local doctor that has admitting privileges at a local private hospital so that I can get infusions here. My last month I was up to 4 bags and had to do it over two days and that's a hassle not to mention I got down to 73 Hb count. That still allowed me to walk down to Lake Wobby and back but apparently it also triggers all the stories from the nurses about guys with counts of 40 and them being near arrest. I gather that having a certain amount of red cells is good for you and having not enough can be fatal.  I don't mind mind myself you understand, its the nurses comfort I'm thinking of.

New Information: Dr. Shozeenbootzen thinks we need to go for 3 months before assessing my progress and possibly abandoning this line of treatment. He did say that at two months (a month from now) he will present my case to the transplant board to see what they say about DLI or another PBSCT

-------Now I won't keep coming back for you BUT I know we have a lots of new readers so her's a few of the basics
DLI Donor Lymphocyte Infusion = Taking some of my brothers angry cells and infusing them into me to ramp up my immune system to fight the Fibrosis in my bones.
PBSCT sometimes I refer to it as bone marrow transplant but it Peripheral Blood Stem Cell Transpant. they spin out my brothers marrow stem cells and inject them into me. Less painful for the donor.
My Marow is clogged up by my cancerous growth called MyleoFibrosis so the marrow doesn't make the right protions of Blood cells.
over 30 kinds of blood cells but the biggies are the Red cells, Whites and Neutripils (infection fighters) and Platlettes (plug the holes) I make an okay amount of Whites right now, platlettes are down a bit but I've temporarily stopped making Red. Yes gentle readers that IS not good.------

My donor, my Bro is going to be getting a call in a month or to see about maybe coming over for a return engagement with the apheresis machine. http://en.wikipedia.org/wiki/Apheresis. But they may send a scientist to collect the cells instead. All up in the air. May not be needed. Hmmm some people may find all these unknowns to be shitty....... but not me.... I thrive on unfulfilled expectation!

Hands up who just saw the mild sarcasm there. Good for you.

In preparation for going to Fraser Island at the beginning of the month I put a splinter into the back of my hand and into a vein. No it wasn't necessary to be disfigured for the trip but clearing the plywood out of the back seat was. I pulled the giant splinter out and got pressure on it immediately but I gather I didn't get all  the particle out. I went to the Ultrasound Studio (they really are artists) and the nice gentleman looked into my skin. We found a 7 mm long fragment and then as he looked at the end view I said is that another one and sure enough he had missed a second smaller piece and thought I would do as a new Sonogramist. (Yes I know I made up a word but you know what I mean, don't you? Well then). Anyway I have an appointment to get it removed by a surgeon. Perhaps overkill but I do have immune issues so the doctors know best.

The Big Knock,  my campaign to dominate the world or at least raise some funds for the Leukaemia Foundation is going very nicely ... Thank YOU very much.

We have done over 20 'knocks' and raised over $1000.00

Join by liking our facebook page

www.facebook.com/TheBigKnock


Then think of someone that you want to receive a baked treat and message me. Make a donation to the Leukaemia Foundation and we will find a home volunteeer baker near your loved ones and get them to bake a treat and deliver it.


 Here's some pictures of knocks so far.

Wow Big post for a little guy but there you go
More Later, Chris

Hmmmmmm

I needed four bags of packed red cells. New record low at 73 unverified results were 67 and that freaked people. 73 is still low enough the nurses started telling their low Hb stories. So I'm guessing that I'll have to get blood locally in between brisbane trips. Bluey is not happy about that as I will have to surrender to yet another Dr.s input and that means that Doc Shoozenbootzen has less mojo over me and she trusts him so much. More talk of going straight to transplant if Interferon doesn't work. Starting talking about where to live in Brisbane if we have to move again.

But put the sisters on the plane that was nice.... That they were here not that I put them on the plane!
 More later
Chris

Balancing Blood

So last week I was down a bit of red cells and my next video chat with Doc Shoozenbootzen is next Friday when I will be on Fraser Island for my birthday trip.  So I'm having to have a special blood test on Tuesday so that we have enough time to talk to the doc and organise a transfusion if required BEFORE I leave the mainland. I'm guessing the the blood service people, who are wonderful and the local hospital people, who are unknown at this point may not see my trip to the island as part of THEIR priority. Hey people its my 60th and I'll need that blood so I can rage on. Okay to be truthful i'm not sure how much raging is really going to happen but just the same.....
"Wishing I was knee deep in the water somewhere, thinking 'bout the blue sky breeze, my only worry is the tide gonna reach my chair".....Jimmy Buffet
more later
Chris

Inter-NO Fear- on

Okay I've had 6 injections and they don't hurt much and after the first one I don't have very much reaction either. My skin is getting a little bit itchier but than could just be the cold dry weather we are having, now. so all in all its good I'v had two blood tests and my liver and kidneys are still good but this second one I dropped to 97 heamaglobin. Nothing to panic about but its not a trend we like, at the current rate I may need a top up of packed red cells at next trip to brisbane. This is getting to be a pattern. 6 weeks ago I got two bags two weeks ago I got 3 bags so in two weeks how many bags do you bet I'l need?

Here's the problem though, I'm going over to Fraser Island in a week for my 60th Birthday party trip. I'm thinking I want to rage on but being down in reds means I'll be raging from my napping spot. Not what I had in mind but sure beats the alternative.
more later
Chris

Interferon the First

Sounds like an emperor in the Stars Wars saga. While i had the first injection and I dare anyone to not be a little nervous the first time they inject themselves with something that has FEAR in the name! I guess I was more concerned about side effects then the jab. Bluey read up the entire pamphlet and was talking about practising on oranges but in the end just stuck it in me and there were a few bobbles but it was good in the end. Barely hurt going in slipped out fine and I had mild mild aches this morning and a bit of a headache. Nothing some water didn't fix. So that's great now on to seeing what happens after I take it three times a week. Blood test tomorrow and Skype call to the Doc on Friday.
Repeat each week for 7 more weeks.
Easy.

Well I can't help but think if there are no symptoms of Graft versus Host Disease (GVHD) then there is nothing kicking at the cancer cells. But after only one injection that's rubbish talk. Get over yourself you Git!
Easy.

More Later
Chris

What me worry?

This last appointment in Brisbane was a bit of a drag. First we got up at 3:30 left home at 4:15. I did all my intra gram then The nurse got Doc Shoozenbootzen in. He apologized for delay in starting interferon because the trial people led him to believe I was good for the trial. Just other people got in first. He then went on to do the BMA (butt stab) and that went well... I'm told. There was a moment when doc was prepping my back and the nurse was waiting to get his attention to answer the question about how much " dazzle" to give me, but he was telling a story to Bluey and our pal... But he was getting on with his prep and soon there would be pain! I grabbed her arm and said put it in! That stopped the story enough to get "give him half" . Then I told her that was good but I needed to relax as one time he had to tell me "Chris, Shutup and go to sleep". Doc says what? So I tell the story again.... There's a pause as he is remembering then he says " give it all to him" Sweeter words I have never heard! So I know nothing for sure but appaeartntly I was a laugh riot and many people came to visit. I get the results at the end on the week in a Sypke call. In the talk before I was stabbed he also told us a bunch of things. Interferon would be on PBS. I will start interferon Monday and do it three times a week. Flue symptoms , worst for first month We should do it for 8 weeks and if no change then go on to next treatment plan as it means that it is not working. He also told us that the current drop in red cells is either.. 1. Part of my immune system kicking the fibrosis clones and after they are kicked there is an aplastic phase where there is a vacuum and the cells are down. Then they get ramped up again. 2. The fibrosis has advanced to the place where the fibrosis is interfering in cell production. He thinks it's 2 We will know the interferon is working when two things happen. 1. the GVHD is unleashed with its various side effects, but it would attack fibrosis clones. 2. The interferon will attack the clones directly. If after 8 weeks we get no results then we stop the interferon and go on to either DLI or second transplant. This also means we have to decide that since we are bringing Rick then do we do just the DLI or go straight to BMT. They can harvest for both in the time trip DLI cells fist then transplant cells. But these are decision for later. Remember a few appointments ago I was by myself and I was trying to think about what Bluey would want to ask and he said " she would ask me should I worry" and he answered no " and two, Do you have a plan" and he said yes. Remember that? So we have justbheard allnthis stuff about missing red cells and interferon maybe not working and I'm a bit nervous about the BMA and then I ask, as a smart ass, "should Joyce worry?" He says Yes. Then starts to stab my butt.Hmmmm More later. Chris

Floating toward the deeper end of the pool

Had another video conference with the doctor, who had to drop his video because of the poor connection.... is it still called a video conference if only one party is visible?

I had further blood tests done early last week and the doc did not mention my liver/kidney results so that is good I guess. But my Haemoglobin was down to 80 (reminder that males are usually up around 125 to 140, can't give blood below 120, have to get blood below 90) anyway its a worry as to where my cells are going. Doc Shoozenbootzen says it could be the progression of my disease or could be because my immune system is kicking in. But he needs to know .... so now I'm also booked for for my regular intragam on Thursday along with another Bone Marrow Aspiration (BMA), some whole blood, and the start of my interferon. It may be a long day as the intragam takes about 1.5 to two hours, the blood is two hours per bag and the BMA about 1.5 to 2 hours.

------ remember this symbol means that there is stuff you can ignore following, but it may have good bits none the less. Bluey is my wife and is so named not because she has the blues, although that happens from time to time, but because she has the most beautiful red hair that science can create. Its an Australian thing. ------

Bluey is totally looking forward to this trip because of what was revealed in this half vid conference. The continuation of the interferon injections will be done AT HOME. Yep Bluey gets to jab me. I complained to the doctor that any infraction in the previous days would result in an unfortunate,  for me, choice of injection location!  He laughed so hard and then said " Yes I would imagine that a scrotum injection might be painful!"

I'm having to manage my own case more. I'm keeping track of what the doc says but I have to be talking to the receptionist Chills, the practise manager, Michael, the clinic booking officer, Scots Queen,
The staff at the pathology lab here etc. This is tip for anyone embarking on a program like this. YOU MUST BE THE MOST INFORMED AND PROACTIVE PERSON ON YOUR CASE. UNLESS YOU HAVE A BLUEY, then you can totally relax!

------I have always disguised the names of the medical practice people because I don't want there to be any issues about what I say about them or what I say they say.-----

Anyway at least I will be starting some treatment. It has been a bit of a worry for me (what, Me, Worry?) that we know my fibrosis is back back but we have not started any of the treatments. Interferon, DLI, Transplant. I tried to think of it as good news that the progression is so slow we don't need to rush but I'm starting to feel like I'm on this floating lie-low on the surface of a nice pool... but that pool is starting to tip down to the deep end and there is just the very slightest feeling, barely perceptible, of current flowing to the deep end.

So better hand me a margarita and lets see where this ride takes us!

more later.
Chris

the problems with compromised immune system

First off my immune system may very well be coming up to scratch as we speak but it's not all there yet. so..
I watch what I eat. don't want intestinal bugs to run rampant.
I watch what I breath, care in gardening etc.
I watch cuts and nicks
So imagine my concern when a bit of thin ply, that I use under the dogs pad in the back of my truck, slid through one hand and along the back the of my other hand causing an 1/8 inch thick sliver to be driven into my hand. I looked at it and thought "my that hurts more then usual and look at that angle, its pretty perpendicular to my skin". As I pulled it out a huge amount of blood pooled up and I thought " hmmm thats the colour of the blood that they take out of of my veins every month, Holy C**p I just stuck a sliver in a vein". So I grabbed a cloth a pressed down hard for a a few minutes. and its stopped bleeding.  All good right but then I spend a lot of time yesterday, last night and this morning watching for signs of fever, indicating infection. It still hurts like heck but no infection nearly 24 hours later, so might have dodged this one.  But now, even more than ever, bluely hangs on my actions wanting then to be super safe and I worry that she worries.  Oh well that's life. yep it IS.
more later
Chris

You can comment so I know who is reading..

I have set the privacy to allow for anonymous commenting so please leave you name in the body when you comment but you don't have to create an ID or anything. Thanks

If its complicated that's the way for me.

Okay remember that Doc Shoozenbootzen wanted my kidneys looked at/ monitored by my local GP. Turns out she is on five weeks leave so I saw her office mate instead. He seems very nice and above all thorough. He got the referral letter back from Doc Bootz and proceed to give me one complete internal exam...from the outside. I never knew a doctor to get his hand up under my rib cage that far. Anyway its a bit comforting that my internal organs have all been 'touched' by Doc Y. So he sent me for another blood test that I did on Tuesday and then before I could call on Thursday his nurse called me! Anyway it must have been okay because I just have to repeat the blood test in 7 to 10 days. If it was bad I already had the Rx for a kidney ultra sound. Oh and a pancreas ultra sound, this last part is because they found a bump on it years ago in the hospital and just want to keep an eye on it.

 Just now you are thinking 'really on top of everything else ..a bump?'

 I remind you of the title of this post!
more later
Chris

More Sunday calm

Well I had a week of drinking lots of water, blood tests Wednesday and skype call on Friday. Doc Shoozenbootzen said my reds were back up to 95 still a bit low but way better then 78 anyway he is still puzzled by where my red cells went to. Add to that my kidneys are crap again and he wants me to see my local GP to get a grip on that. I'm not going on tHe trial. They are starting with different people and the doc is " pissed off" so I'm going to start my own trial on one of the regular interferons, not the tessellated variety. There is some misremembering here about how I get it, (at local hospital or self administered). And we will be meeting on Skype more often. So I start in July on the new treatment and a bit glad as we have been finding new things to try but we haven't been trying anything! So at the end of the conversation the doc gets a funny look and announces that maybe the missing reds and some cleaned up whites might mean that my immune sys HAS started up to kick the fibrosis on its own! Knock me over with a feather. This is still just a theory and I'm still starting on the interferon and the doc is not big on false hope But still.... More later Chris

The calm of Sunday

Bluey is still a sleep. I get that as its been a busy few days and she drove all the way down to Brisbane and back. Red dog does NOT sleep in and REQUIRES his morning walk and now I can't get back to sleep. Doc Shoozenbootzen said in passing tha this little wrinkle should not keep me from the trial but nothing about when it starts etc. so thats something to think about and obsess over. He has booked me for more blood tests Wednesday with a Skype chat on Friday to see where we go. More good obsessing material. Red cells live for 90 days so to have 101 - 78 = 23 (thousand?) go missing in one month makes docs freak out. It's like my Mom would say to the four us trying to elicit a confession.... "well they didn't just get up and walk out on their own!" Now that's really good obssesion material. So te recap.
 What we don't know
- where my red cells are going so fast
- whether I go on a treatment trial soon
- or later
-whether I go to the next level of treatment ..the donor Lymphocyte Infusion sooner
- or later
- whether any plans for my birthday in August will get screwed up
 - or not
 What we do know



 {this space left blank on purpose}




 More later Chris

Keep a look out

I seem to have misplaced my blood. They are currently looking into why it's gone and I'm half way through my first of two replacement bags. No immediate adverse reactions but my tummy is a bit whoopsy. Could just be the long day. May try to convince Bluey to stay in a hotel tonight. Still have not had talk with the Doc either. 4:30 pm and still dragging along. Oh well at least I have my health, no wait.... More later Chris

The real problem

Its not that my fibrosis has reduced the amount of red cells to 78. It's not that my plateletes are now down to normal levels for the first time inn 18 years(expected to be always up abit because I have no spleen now). Nope. The real problem is that Bluey is going to wrap me in cotton wool now. Gone are the carefree days of climbing ladders to clean the gutters, or hoisting the kayak on pulleys to the ceiling of the shed, these were done two days ago with the read at this low level. Once I get these two bags of blood today I'll be fit as a fiddle in hours. But she is going to be worried that I'll drop again. Doc Shoozenbootzen is a bit stumped as to where my blood has gone. He's called for a whack of new tests so more blood to be drawn... And now there's a drama about cross matching my bags of blood. We have to get permission from on high to get the premium grade universal because it's looking like I'm half my old type and half my new type so it's freaking the cross match people in the lab. It's now 3:17 and still haven't had the long talk with the Doc or got the extra blood we might have to stay over night? Sigh More later

It's not my fault

Red blood level of 78, my usual is 120 to 130 lately been dropping, usually get bag of blood at 90. Waiting on two bags! Crap! Bluey upset. Guess this is why I've been puffing lately.

Waiting.....

Still have not heard if I'm going on trial, or doing DLI. Sigh.

If I'm good I get to go to trial.

Whoa..?! Where did that come from? I now have a third alternative treatment!
Okay for those of you playing along at home you will remember that my Fibrosis is back (read cancerous growth inside my bone marrow) Anyway we tried dropping my immunosupression and that didn't work at attacking the the fibrosis. Although it was great for getting my off all those drugs.  Anyway the next idea was to try Donor Lymphocyte Infusion (take cells from my donor/brother and inject them into me) these new angry cells would come in and kick hell out of the fibrosis.
We are already talking with my brother about the trip over and Doc Shoezenbootzen floors us with ..
"want to get into a trial in a few weeks" Apparently they have found that some patients respond positively to getting a shot of Tessellated Interferon each week for two months and I guess that makes my own cells angry enough to kick s**t out of the fibrosis.
We can go on to the DLI or maybe do both later. All this would be before doing a full transplant again.
So I will once again be 'presented' to the transplant committee next thursday to see if I am eligible. If so then the Bro get puts on hold for a bit.
I told you there would be more later!
Chris

Results from the last BMA

Okay it was good news, bad news so I'll cut to the chase .. not to much rambling. After DNA testing on my bone marrow aspiration, the good news is that my T-cells (the basic building blocks for my blood creation) are my donor's cell's. So my blood and immune system are the new, good cells. Yay.

It's been confirmed again that my fibrosis had returned and the fibrous structures in my marrow are crowding out the good cells. I guess the recent reduction of the immunosupressant (and subsequent releasing of my new immune system) did not attack the fibrosis. I knew that, because I still had not had any other symptoms of the Graft Versus Host Disease we expected.

On to Plan B.... Donor Lymphocyte Infusion.
In simple terms ...get the original donor, collect some of his Lymphocytes in a bag, give the bag of cells to me. Simple. In reality it involves convincing my lovely donor sibling to take a tropical vacation that includes sitting in a chair hooked to a machine (like dialysis) for some hours and then enjoy Queensland while I sit in a chair and get an infusion of lovely cells. then they watch me for a few weeks, take blood tests etc until I have reduced fibrosis.

If it doesn't happen at that strength (lets call it concentration Y) then they have cleverly already collected the next one up, Y x3  and if that doesn't work then they give me concentration Y x9 and so on.

Doc Shoozenbootzen called them "angry cells". I guess they are pissed that they got uprooted from a nice comfortable environment and then they are thrown into this new somewhat familiar environment, "all good here..hey red cells, how you going white cells....but wait that's not my regular looking veins and arteries, and what's that lung! That's not my regular lung and this is not my regular heart! What the hell's going on here, the marrow has this stuff in it.... I'm pissed and going to F**k up something and I'm going to start here with this gunk!

Well his explanation was more medical but I'm sure that what the process is.

Yes yes I can hear you asking .."but that sounds like the transplant you already did?" It is NOT at all like it.
a. The donor does not get growth factor over four days to rev up cell production and therefore does not get flu like symptoms.
b. The cells taken are Lymphcytes not T-Cells (bone marrow cells).
c. I don't get chemo to kill off my old T-cells.
d. Since they are already similar to the blood cells I make now, then there will be less complications and unpleasantness (like my having to take steroids and dex and making my wife crazy)

So any questions?

more later
Chris

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

Update

Well it WAS too much to hope for. I had thought it would be nice to see some results that the new reduction in immunosupression was working. They are still okay not dropping but not going up either. I guess there is some good news in that doc shoezen bootzen has dropped the meds to half again and in two weeks. I'm off them all together. He would not ha,ve done that if there was an issue. So there you go. More later Chris

The Parrish knees

I guess i have to tell you about my knee. I can't seem to get it to heal and as time go by its seems like it going to take longer and longer. I messed it up before christmas and it through my back out and that caused to walk funny and that meant my ankle blew up a bit. so I'm off work and taking it easy trying to get everything to stop hurting long enough for me to get some strength exercises on to it. anyway its boring as as spit but I'm keep off the knee and the ankle and both seem to be responding by not aching, tweeking, stinging etc.

more later
Chris

So where were we?

Okay I'm trying this on the pad but I'm not sure how long I'm going to be able to type this way.
Prize to Regulations for finding that I have been blogging again ...for a while. She is of course a brilliant person as are all my friends and relations.

I've been on the reduced immunospression for over a week now and I don't feel any different. I wasn't expecting to feel the increase of red cells as a result of the reduction in the fibrosis right away so that's a very long term thing. But the good news is I don't seem to have any of the GVHD side effects either and that's excellent!
In another three weeks I'll get another blood test so we will see then if there is any change. Nice if there is but maybe too soon to be looking for it.
On another front Bluey is losing sleep because of me and her sister. All I can do is to let her nap when she can and to "Just concentrate on getting better".
Might announce that I have restarted this blog?
More later
Chris

Well there you go.

I guess I thought we would have a week of this level then drop it to a week of that etc. but nope. "drop the one drug and cut the other in half." We will have to wait and see what other issues occur as a result of cranking up the GVHD....
----- People, we talked about this! Do a search in this blog for GVHD and then you'll have caught back up.--
The reaction could be nothing if my old body is getting used to my new immune system. If its not acclimatising the we could be in for a ride. If you did do the search you will remember that Graft Versus Host Disease targets three areas...
Yes, Ret ,the gut is one, Mary Ellen! Excellent the liver is the hidey one, anyone else remember the third area?....biggest organ in the body???.... Of course Brenda you are right!...pardon..... you knew it early...before the clue...but your keyboard locked up.  Got it in the end anyway.
GVHD can strike anywhere  as well because as we all know....SAY IT WITH ME... "every patient is different"
I amused Bluey in the car on the ride home when she tried to surprise me with the old chestnut "So tell me about your self"
"I'm 6'2" have blue eyes and I am a para-olympian." i fired back then for no know reason I continued with  "I'm active in the community as the registrar of the Australian Accountants Society cause that what I do I count things. I make a fair living counting things so I try to put back into the community." There were several cars passing wondering what was making the driver convulse.
Remeber I have the comments turned on. Please let me know you are getting this transmission.
Started work on the tips.
more later
Chris