you know da, da, da, daaaaaa
Any way I'm so looking forward to Friday....NOT
That is all for now.
more later
Chris
Tuesday, October 30, 2012
Sunday, October 28, 2012
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
more later
Chris
Friday, October 12, 2012
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!
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!
Sunday, October 7, 2012
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
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
Wednesday, October 3, 2012
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!
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!
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