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!!!