I went into the day ward this morning for a blood test and the results show that my white count is as good as zero at just .1 (4.5 - 5.6 normal) and platelets at 36 (150 - 450). I've been told to come into Ward one on Sunday morning for another test and to expect to be there most of the day if I need blood transfusions.
I spoke too soon on the upset tummy front, but it's not too bad and my mouth is still in good shape. I'm avoiding flossing and have a very soft toothbrush. Hopefully this will avoid a repeat of last months ulcers and infection. I also bought myself a nifty little digital ear thermometer so I can take my temp without having to sit around waiting with one stuck in my mouth like I have been doing. You just poke it in your ear and press the button. Anything over 38C and I'm straight off to hospital. Luckily it's been rock solid at 36.5 (middle of the normal range) so far, so that's really good.
I still smell bad though. As soon as I walked into the day ward this morning the nurses commented on my odour. Maybe they are just tuned to it.. it's quite an unusual smell apparently. Could take a few more days to subside.
Hopefully not too long!
Friday, February 20, 2009
Thursday, February 19, 2009
Home.. Home at last! Day1
I stink! ...No seriously I do. It's a result of the preservative they use on the stem cells and it's not nice. Actually I can't smell it but everyone else tells me I smell like a chemical version of a cross between garlic and seafood.
Great! So I'm gonna spend the next few days impersonating a synthetic garlic prawn.
Yesterday was a pretty crappy day I have to say. It took about two hours to inject the stem cells back into my PICC line (BTW, PICC stands for Peripherally Inserted Central Catheter) in my arm. They sucked the cells out of their blood bags using twenty huge syringes and then connected each syringe to my line and reinjected it from there.
They also gave me a shot of an anti-emetic that I have reacted badly to in the past. It pretty much knocks me out. The result yesterday was that I wanted to sleep a lot, was incredibly grumpy and irritable. Poor Sarah took the brunt of it when she woke me coming to bed. Luckily I snapped out of it and aplogised for being such a pain before she had time to throttle me.
Today I'm feeling ok-ish, well as good as one can realistically feel the day after a stem cell transplant. I'm just a little off colour and have only a small amount of energy available. It's like running a toy on almost flat batteries.. you get just a few minutes of rather pitiful running before it grinds to a halt. So that's me, I just have to plan my energy output and stay in cruise mode. There's no need to spend days in bed or anything if I pace myself.
So far it's been 48 hours since I had the Melphalan and I have yet to develop any new symptoms such as a raging sore throat or stomach problems. I'm hoping my ice-cube sucking experiment has saved me from that. If that is the case then I will recommend to the BMT staff that they implement my "cryotherapy" ice-cube sucking regime for all patients under-going a transplant. The only thing they offered me originally was one ice-block, where as I sucked on ice for thirty minutes before and sixty minutes after the drug was administered.
I have an appointment tomorrow morning for a blood test and then probably daily testing for the next few weeks as my blood counts plummet to zero before recovering once the stem cells make new marrow. It would be so good if I could get through all this without serious complications.
I have been rigorously sticking to my regiment of mouth washes, honey water and soft food so I don't have a repeat of last month's neutropenic sepsis and end up in hospital again.
Ok, shall go and see what the day has to offer.
Great! So I'm gonna spend the next few days impersonating a synthetic garlic prawn.
Yesterday was a pretty crappy day I have to say. It took about two hours to inject the stem cells back into my PICC line (BTW, PICC stands for Peripherally Inserted Central Catheter) in my arm. They sucked the cells out of their blood bags using twenty huge syringes and then connected each syringe to my line and reinjected it from there.
They also gave me a shot of an anti-emetic that I have reacted badly to in the past. It pretty much knocks me out. The result yesterday was that I wanted to sleep a lot, was incredibly grumpy and irritable. Poor Sarah took the brunt of it when she woke me coming to bed. Luckily I snapped out of it and aplogised for being such a pain before she had time to throttle me.
Today I'm feeling ok-ish, well as good as one can realistically feel the day after a stem cell transplant. I'm just a little off colour and have only a small amount of energy available. It's like running a toy on almost flat batteries.. you get just a few minutes of rather pitiful running before it grinds to a halt. So that's me, I just have to plan my energy output and stay in cruise mode. There's no need to spend days in bed or anything if I pace myself.
So far it's been 48 hours since I had the Melphalan and I have yet to develop any new symptoms such as a raging sore throat or stomach problems. I'm hoping my ice-cube sucking experiment has saved me from that. If that is the case then I will recommend to the BMT staff that they implement my "cryotherapy" ice-cube sucking regime for all patients under-going a transplant. The only thing they offered me originally was one ice-block, where as I sucked on ice for thirty minutes before and sixty minutes after the drug was administered.
I have an appointment tomorrow morning for a blood test and then probably daily testing for the next few weeks as my blood counts plummet to zero before recovering once the stem cells make new marrow. It would be so good if I could get through all this without serious complications.
I have been rigorously sticking to my regiment of mouth washes, honey water and soft food so I don't have a repeat of last month's neutropenic sepsis and end up in hospital again.
Ok, shall go and see what the day has to offer.
Wednesday, February 18, 2009
Day 0: Getting My Stem Cells Back.
Today is what they call 'Day zero'. It's the day I get my stem cells back. Every day after this is counted down until the cells engraft, start making bone marrow and then my blood counts return to the normal range. It could take from ten to twenty eight days.
I finished my saline IV at 6am, a full 23 hours after they started. One of the nurses was about to reconnect me to a slow drip this morning and I said "no way!" They thought it would be a good way of keeping the IV line open until I got my stem cells. I insisted that I be disconnected and that the line be flushed with Heparin they way it's been done previously. Why anyone would think a patient would be happy to stay connected for no good reason after 23 hours of continuous IV's I have no idea. I got my way.
I have no idea how long the stem cells will take to be administered. I remember there were nine blood bags full when I took them to Germany, so it could take some time to infuse them.
So far I've only had a couple of bouts of nausea, thrown up just the once and my mouth seems to be holding up so far with no real problems with swallowing etc. It is of course still very early days. As the cells lining my mouth die off there will be no new ones for some time to replace them so it is likely to become quite raw. The nature of the chemo drugs is that it binds the DNA of cells and stops them from replicating. Fast growing cells such as hair, mouth, stomach lining are affected the most as are cancer cells that divide very quickly. Hence the use of the drugs.
I'll post later once I'm getting the stem cells...
I finished my saline IV at 6am, a full 23 hours after they started. One of the nurses was about to reconnect me to a slow drip this morning and I said "no way!" They thought it would be a good way of keeping the IV line open until I got my stem cells. I insisted that I be disconnected and that the line be flushed with Heparin they way it's been done previously. Why anyone would think a patient would be happy to stay connected for no good reason after 23 hours of continuous IV's I have no idea. I got my way.
I have no idea how long the stem cells will take to be administered. I remember there were nine blood bags full when I took them to Germany, so it could take some time to infuse them.
So far I've only had a couple of bouts of nausea, thrown up just the once and my mouth seems to be holding up so far with no real problems with swallowing etc. It is of course still very early days. As the cells lining my mouth die off there will be no new ones for some time to replace them so it is likely to become quite raw. The nature of the chemo drugs is that it binds the DNA of cells and stops them from replicating. Fast growing cells such as hair, mouth, stomach lining are affected the most as are cancer cells that divide very quickly. Hence the use of the drugs.
I'll post later once I'm getting the stem cells...
Tuesday, February 17, 2009
So far so good.
I've completed all my chemo and so far I feel pretty good considering. I've taken a few extra anti-emetics after I felt a little queasy at around 2pm, but otherwise I feel OK.
Just gotta get all these saline drips over and done with , then get my stem cells back tomorrow, and hopefully I can go home :)
Just gotta get all these saline drips over and done with , then get my stem cells back tomorrow, and hopefully I can go home :)
Last day of chemo
I got up early this morning, got dressed and went for a walk to blow the cobwebs out.
I think one of the side effects of spending so much time in bed is that you become quite stiff, sore and restless.
In a few minutes I will be hooked up to an IV pump that will run continuously for the next 20+ hours. At Midday the dreaded Melphalan will be administered over fifteen minutes. Several of the doctors and nurses have already warned me of it's nasty side effects. The one good thing is that it's the last of the poisons.
I've prescribed myself 'Nilstat' as a preventative for oral thrush, something I usually develop after chemo. I've also asked the doctors to prescribe a topical antibiotic for a couple of small lumps I have developed on my left temple. As my blood counts drop it is very important to reduce any chance of infection and even something as small as a pimple can become a major problem.
Sarah has taken the day off work and will be my "Ice Queen" today, providing me with a constant source of ice and ice-blocks over a two hour period. This should alleviate some of the problems with mouth ulcers etc.
Tomorrow I get my stem cells back and the road to recovery will start. However I've been warned that most of the side effects won't kick in until the coming days and weeks.
Last night I woke and threw-up for the first time. It was no big deal luckily and after a few short heaves I was feeling OK again. With an empty stomach it wasn't too much of an ordeal.
Shall update later if I'm feeling up to it.
I think one of the side effects of spending so much time in bed is that you become quite stiff, sore and restless.
In a few minutes I will be hooked up to an IV pump that will run continuously for the next 20+ hours. At Midday the dreaded Melphalan will be administered over fifteen minutes. Several of the doctors and nurses have already warned me of it's nasty side effects. The one good thing is that it's the last of the poisons.
I've prescribed myself 'Nilstat' as a preventative for oral thrush, something I usually develop after chemo. I've also asked the doctors to prescribe a topical antibiotic for a couple of small lumps I have developed on my left temple. As my blood counts drop it is very important to reduce any chance of infection and even something as small as a pimple can become a major problem.
Sarah has taken the day off work and will be my "Ice Queen" today, providing me with a constant source of ice and ice-blocks over a two hour period. This should alleviate some of the problems with mouth ulcers etc.
Tomorrow I get my stem cells back and the road to recovery will start. However I've been warned that most of the side effects won't kick in until the coming days and weeks.
Last night I woke and threw-up for the first time. It was no big deal luckily and after a few short heaves I was feeling OK again. With an empty stomach it wasn't too much of an ordeal.
Shall update later if I'm feeling up to it.
Monday, February 16, 2009
Monday..Yuk
Another day of feeling restless and unable to relax.
I've slept most of the day away. I was visited by my Mother and sister, Joy, in the morning but other than that it's been a day to endure.
Tomorrow is my last day of chemo, but it is also the worst one. I have a very powerful drug administered at around midday that is preceded by three hours of saline IV drip and then followed up with a full sixteen hours of saline afterwards.
I wouldn't expect myself to be up to posting anything. Health-wise I have a sore throat but I'm told the worst is yet to come. I'm just focusing on when this is all over. So far I have only felt like throwing up once or twice and this is easily stopped with anti-emetics.
I've slept most of the day away. I was visited by my Mother and sister, Joy, in the morning but other than that it's been a day to endure.
Tomorrow is my last day of chemo, but it is also the worst one. I have a very powerful drug administered at around midday that is preceded by three hours of saline IV drip and then followed up with a full sixteen hours of saline afterwards.
I wouldn't expect myself to be up to posting anything. Health-wise I have a sore throat but I'm told the worst is yet to come. I'm just focusing on when this is all over. So far I have only felt like throwing up once or twice and this is easily stopped with anti-emetics.
Sunday, February 15, 2009
Sunday...
OK I have to admit that yesterday I wasn't feeling too crash hot.
It was probably the steroids again. They are part of the anti-emetic lineup, or should or say 'were'. I've ditched them. I just can't handle the awful way they make me feel. So wired and restless.
Although I did manage to get out again yesterday. Sarah came and picked me up after lunch and took me home. Once there I lay on the bed and slept, got up and had a shower before returning back here to the hospital. I tried to get as much sleep as I could as a way of hiding from the effects of the drugs. There's nothing else I can do. Reading, watching TV or going on the internet all require an attention span I sadly lack. Today is better... so far.
I met with Dr D'Souza yesterday morning and we discussed my CT results. He was very pleased with the almost clear scan. I half jokingly suggested that maybe two cycles of the IVE chemo would have been a good thing. He said he had considered it but it would have complicated things too much. One thing he did say was that he believed the chances of this treatment being successful has doubled from 25% to around 50%. Had my lymphoma continued to be chemo resistant the odds would be lower.
It's Sarah's birthday today and once again I am allowed out in the afternoon, so she is coming to pick me up and we shall celebrate in some small way.
Meantime I shall wait for the chemo to finish in another thirty minutes and hope I feel well enough to enjoy the day.
It was probably the steroids again. They are part of the anti-emetic lineup, or should or say 'were'. I've ditched them. I just can't handle the awful way they make me feel. So wired and restless.
Although I did manage to get out again yesterday. Sarah came and picked me up after lunch and took me home. Once there I lay on the bed and slept, got up and had a shower before returning back here to the hospital. I tried to get as much sleep as I could as a way of hiding from the effects of the drugs. There's nothing else I can do. Reading, watching TV or going on the internet all require an attention span I sadly lack. Today is better... so far.
I met with Dr D'Souza yesterday morning and we discussed my CT results. He was very pleased with the almost clear scan. I half jokingly suggested that maybe two cycles of the IVE chemo would have been a good thing. He said he had considered it but it would have complicated things too much. One thing he did say was that he believed the chances of this treatment being successful has doubled from 25% to around 50%. Had my lymphoma continued to be chemo resistant the odds would be lower.
It's Sarah's birthday today and once again I am allowed out in the afternoon, so she is coming to pick me up and we shall celebrate in some small way.
Meantime I shall wait for the chemo to finish in another thirty minutes and hope I feel well enough to enjoy the day.
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