Blip time.....well for my mindset anyway!
I got my paraprotein results yesterday (my bday too!) and they have come down but have only come down to 27. I don't know why, but despite the doctor saying they probably wouldn't keep coming down so fast, I had really banked on them coming down a bit more than they did. It was a bit of a downer hearing that they hadn't.
I try so hard on here and in general to be positive about stuff, but found myself getting a bit low yesterday. I suppose I'm a bit scared of what might happen. I feel like I'm dealing with the chemo quite well so far, so in my head, I'd felt that I could cope with the next couple of months and the transplant....but if it doesn't work so well (and I know I'm getting ahead of myself here!), and I have to go onto Velcade, I just don't know how that will affect me, the kids etc. Nick told me off for trying to second guess it all yesterday. He's right too (I so so hate admitting that!!). Really I just need to take a chill pill, wait till the end of my 4th cycle and see what they say. But it is not me to do that...I want to plan, I want to know when I'll be in hospital, I want to know if we can book a holiday, I want to know what childcare I need to sort!!!
People on the Under 50 site have been great though...a couple of people have mentioned that sometimes a quick remission, can lead to a quick relapse, and God knows I don't want that. Also, (and I may be clutching at straws here!), my paraprotein was pretty high to start with, but with a relatively low figure for my bone marrow....so it could be that I don't need it to go so low for them to give me a transplant. And I suppose the other thing to think about is that perhaps every month I don't have to have the transplant is just another month....another month with no risks, another month towards a 'relatively' healthy lifestyle, and another month towards new treatments being found......but please, no-one else is allowed to say that to me!!! Only I'm allowed to talk about the possible cures for the future!
I'm dribbling on a bit today...sorry....bit tired as I've worked all morning. Think it might be time for a cuppa before the school run and swimming!!!
Will try to perk up for next time :-)
Wednesday 26 January 2011
Monday 24 January 2011
Cycle 3, Day 6
Firstly an apology to anyone who has been waiting to hear how my last appointment went.....I'm not quite sure where the last week has gone, but I just don't seem to have had 5 minutes to do anything. Still, that has to be a good thing, that I'm not moping around feeling sorry for myself!!
I don't have huge news on my paraprotein as I'm still waiting for that to come back to me (hopefully today or tomorrow!) but all in all things are going pretty well. They were really pleased with how my first cycle went, and how I responded to that so that's good news. My symptoms and side effects haven't changed much since then and, if anything, I seem to be better with no bruising and less breathlessness, so it's all good!
I did have a long chat with them about how things would work from here on though, in terms of how decisions would be made. It is all a little complicated but I thought I'd spell it out for those of you who have asked about it.
Basically, nothing will be decided for definite until the end of my 4th cycle of chemotherapy. This finishes in mid March. If my paraprotein has reduced significantly by then (I think to well below 10), they will do a further bone marrow biopsy to check that my actual bone marrow has improved. If the abnormalities in that have reduced to less than around 10%, the likelihood is that they would go ahead with a SCT. If this happened, I would spend the following 2 weeks having chemo, self-injecting growth hormomes to stimulate my stem cells and then harvesting my stem cells. After this, I'd probably get a couple of weeks to chill out a bit (and maybe go on holiday with the family) before I went into hospital for my 2-3 week stint!! If everything happens as smoothly as it could do, I could be looking at a transplant at the end of April/ beginning of May.
However, all of this can go up in the air at any stage, as if my paraprotein stops responding, or if my bone marrow doesn't improve as fast, or if I don't produce as many stem cells are required, everything will get postponed! I could have to do extra cycles of chemo, or retry the harvesting process using a different type of chemo etc.
I think the uncertainty is always the hardest bit of all of this....especially for a control freak like me. I like to plan and I'm not able to do that with this! I'm getting ever so slightly nervous now that we could be close...after all, it's all happening this year now ...up till now I've been thinking in terms of 'next year'. The good thing though is that I'm in contact with a few people who are going through transplants and who have been able to give me such a positive story....that is such a help.
Work still is the thing that is most in the air for me, though they are being quite supportive at the moment which is great. I had really thought about giving it all up by the end of this month, but I'm not sure I will now...the money helps no end and I'm still hanging out for some sort of contract that might help me in terms of covering sick pay when I have my transplant. I'm a bit torn though, because part of me is shattered and would like to just take some time out to get straight at home and with the kids. How do people make the right decisions with the whole work-life balance...it is so hard!
In the meantime, I'm doing loads of playdates for the kids....building up those favours so that I won't feel so bad when I need other people to help me in the months to come!! Shattering though!
Will update once I get those paraprotein results.....keep your fingers crossed for a similar response to last time!!!
I don't have huge news on my paraprotein as I'm still waiting for that to come back to me (hopefully today or tomorrow!) but all in all things are going pretty well. They were really pleased with how my first cycle went, and how I responded to that so that's good news. My symptoms and side effects haven't changed much since then and, if anything, I seem to be better with no bruising and less breathlessness, so it's all good!
I did have a long chat with them about how things would work from here on though, in terms of how decisions would be made. It is all a little complicated but I thought I'd spell it out for those of you who have asked about it.
Basically, nothing will be decided for definite until the end of my 4th cycle of chemotherapy. This finishes in mid March. If my paraprotein has reduced significantly by then (I think to well below 10), they will do a further bone marrow biopsy to check that my actual bone marrow has improved. If the abnormalities in that have reduced to less than around 10%, the likelihood is that they would go ahead with a SCT. If this happened, I would spend the following 2 weeks having chemo, self-injecting growth hormomes to stimulate my stem cells and then harvesting my stem cells. After this, I'd probably get a couple of weeks to chill out a bit (and maybe go on holiday with the family) before I went into hospital for my 2-3 week stint!! If everything happens as smoothly as it could do, I could be looking at a transplant at the end of April/ beginning of May.
However, all of this can go up in the air at any stage, as if my paraprotein stops responding, or if my bone marrow doesn't improve as fast, or if I don't produce as many stem cells are required, everything will get postponed! I could have to do extra cycles of chemo, or retry the harvesting process using a different type of chemo etc.
I think the uncertainty is always the hardest bit of all of this....especially for a control freak like me. I like to plan and I'm not able to do that with this! I'm getting ever so slightly nervous now that we could be close...after all, it's all happening this year now ...up till now I've been thinking in terms of 'next year'. The good thing though is that I'm in contact with a few people who are going through transplants and who have been able to give me such a positive story....that is such a help.
Work still is the thing that is most in the air for me, though they are being quite supportive at the moment which is great. I had really thought about giving it all up by the end of this month, but I'm not sure I will now...the money helps no end and I'm still hanging out for some sort of contract that might help me in terms of covering sick pay when I have my transplant. I'm a bit torn though, because part of me is shattered and would like to just take some time out to get straight at home and with the kids. How do people make the right decisions with the whole work-life balance...it is so hard!
In the meantime, I'm doing loads of playdates for the kids....building up those favours so that I won't feel so bad when I need other people to help me in the months to come!! Shattering though!
Will update once I get those paraprotein results.....keep your fingers crossed for a similar response to last time!!!
Tuesday 11 January 2011
Looking good so far: Cycle 2 - Day 21
It's been so long since I wrote....so much for keeping a regular diary!! So for some reason, I've chosen a day when I have my sister here, and 2 kids at home sick to update the blog!! Hmmm, rational....not with me!
So what's happened since December? It seems like ages ago. New Year. Well, I can't say I ever really liked New Years Eve....so much pressure to go out, drink lots, and HAVE FUN. Not that I don't like having fun of course, but the idea that you have to go out that evening or you're a bah humbug really gets me down. The last few years, having kids, Nick and I have gone against the pattern, and have just stayed in, cooked a nice meal and talked about the future.
Funnily, it didn't really appeal this year. We went to a friends house, but were home before midnight....I didn't really want to be with other people when that clock ticked over. Nick and I didn't even say HNY to each other....it's not really a year that oozes with happiness...more potential of what might happen after my transplant. It's going to be tough but hopefully will be offering a more positive future. I can't quite imagine what things are going to look like in 2 months time...it's all a bit scary to think of it in too much detail....I think we'll do that once we know what the date is for the actual transplant.
It was nice after New Year to just have a few days the four of us....no visitors for once which is really unlike us, but was actually really nice. We just straightened up the house, played games and had some quality time as a family which was great.
After New Year I wrote to the hospital to find out what my December paraprotein result was. That is the main result that they follow to see whether the chemotherapy is working or not. I got the result at the end of last week, and the great news is that it has dropped from 45 to 32....that is the level it was when I was first diagnosed in July 09. So, it is going in the right direction, and hopefully it will continue that way over the next month....or 3! I belive, and will check this at my next appointment on the 18th, that they are looking for it to go as close to 0 as possible and if that happens, they would be hoping to do the Stem Cell Transplant (SCT) soon after I finish the chemo cycles (probably April/May).
In terms of side effects etc, I'm still doing pretty well in the grand scheme of things. The main difficulties I seem to suffer from, are tiredness, an inability to sleep and a horrid taste in my mouth (similar to the taste you have once you have had a filling at the dentist!). I've finally clicked that the anti emetics do help the taste a little, but sadly not enough to stop me stuffing my face full of food to try to get rid of the taste! So if anyone out there has any tips on how to get rid of the taste/sickness without piling on pounds, I'd love to hear them!!!
I'm still working around 10 hours a week but am finding that harder by the week. I seem to have more time where I don't sleep and that makes me a bit shaky and a bit less focused. Sadly I don't get sick pay so if I don't work I don't get paid.....so I'm trying to keep going for as long as possible before I stop. I'm also talking to my company to see if there is anyway that they might be able to help me through the treatment period, but I'm not holding out much hope there. 13 years with one company perhaps doesn't mean that much after all!!
Right, I'd better go and stop neglecting my children now.....will try to update more regularly!!
So what's happened since December? It seems like ages ago. New Year. Well, I can't say I ever really liked New Years Eve....so much pressure to go out, drink lots, and HAVE FUN. Not that I don't like having fun of course, but the idea that you have to go out that evening or you're a bah humbug really gets me down. The last few years, having kids, Nick and I have gone against the pattern, and have just stayed in, cooked a nice meal and talked about the future.
Funnily, it didn't really appeal this year. We went to a friends house, but were home before midnight....I didn't really want to be with other people when that clock ticked over. Nick and I didn't even say HNY to each other....it's not really a year that oozes with happiness...more potential of what might happen after my transplant. It's going to be tough but hopefully will be offering a more positive future. I can't quite imagine what things are going to look like in 2 months time...it's all a bit scary to think of it in too much detail....I think we'll do that once we know what the date is for the actual transplant.
It was nice after New Year to just have a few days the four of us....no visitors for once which is really unlike us, but was actually really nice. We just straightened up the house, played games and had some quality time as a family which was great.
After New Year I wrote to the hospital to find out what my December paraprotein result was. That is the main result that they follow to see whether the chemotherapy is working or not. I got the result at the end of last week, and the great news is that it has dropped from 45 to 32....that is the level it was when I was first diagnosed in July 09. So, it is going in the right direction, and hopefully it will continue that way over the next month....or 3! I belive, and will check this at my next appointment on the 18th, that they are looking for it to go as close to 0 as possible and if that happens, they would be hoping to do the Stem Cell Transplant (SCT) soon after I finish the chemo cycles (probably April/May).
In terms of side effects etc, I'm still doing pretty well in the grand scheme of things. The main difficulties I seem to suffer from, are tiredness, an inability to sleep and a horrid taste in my mouth (similar to the taste you have once you have had a filling at the dentist!). I've finally clicked that the anti emetics do help the taste a little, but sadly not enough to stop me stuffing my face full of food to try to get rid of the taste! So if anyone out there has any tips on how to get rid of the taste/sickness without piling on pounds, I'd love to hear them!!!
I'm still working around 10 hours a week but am finding that harder by the week. I seem to have more time where I don't sleep and that makes me a bit shaky and a bit less focused. Sadly I don't get sick pay so if I don't work I don't get paid.....so I'm trying to keep going for as long as possible before I stop. I'm also talking to my company to see if there is anyway that they might be able to help me through the treatment period, but I'm not holding out much hope there. 13 years with one company perhaps doesn't mean that much after all!!
Right, I'd better go and stop neglecting my children now.....will try to update more regularly!!
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