Confused, Down and unsure…

So things are a bit up in the air at the moment….and anyone who knows me will know that I hate it when life is like that. I am a control freak and there is no doubt about that. I like to know what is going to happen from one week to the next. Hmmm, things couldn’t really be any more different than that nowadays and I’m struggling a bit at the moment. 

Where do I start? I suppose the feeling of slight depression began when I went to hospital a couple of weeks ago. My main readings are great! My paraprotein levels have dropped down from 2 to 1…..originally pre-transplant, they had risen to 50! So there is nothing to be concerned about there…the paraprotein basically is a good indicator of whether or not my myeloma is active, and when it starts to rise again, the consultant will begin to worry! For the first time in months, I wasn’t neutropenic either so I was feeling pretty positive (When you are neutropenic, you aren’t ill, but you are at risk of catching infections). But then came the news that my consultant didn’t want me to continue self-injecting the G-CSF injections that I’d been having to raise my white blood count and prevent neutropenia. This was partially because they’re not great for you in the long run, but also because they made me achy and fluey for 24 hours after I’d had them. But if I just stopped taking the injections, it was strongly believed that I would become neutropenic again as a result of the maintenance therapy that I’m on at the moment, a drug called Revlimid (Lenalidomide).

I’m really lucky to receive revlimid as maintenance therapy as most patients ‘off-trial’ don’t get it, but I got randomised to have it through the Myeloma XI trial that I’m on. And to me it feels very much like a life-line….like without it I might relapse…and relapsing is my worst nightmare and one that I have pretty much banished from my thoughts while everything has been ticking along nicely. So what does my consultant want to do….well she’s now reduced my revlimid to being 10mg two weeks out of four…it used to be three weeks out of four. I have to get my bloods done half way through this cycle at our local hospital, and assuming that they are fine, we carry on with that protocol. But if I’m neutropenic yet again, they will revisit my drug levels again and probably reduce the revlimid even further. Don’t get me wrong…I’m not stupid and I know that the revlimid may not be the reason that I am still in remission. However, I really don’t like the idea of changing anything that is working. So all my fingers and toes are crossed that next week when I get my bloods done, that things will look nicely positive and I can stay on revlimid as it is now.

But my drug situation isn’t the only thing that I am finding hard at the moment. Work is posing a massive challenge. I absolutely love working for the charity I’m working for. They do a brilliant job, are on an exciting journey forward and are a brilliant team of people. But I’m really struggling with the level of flexibility that the role requires and the hours that I need to put in to do the job justice. And with a charity job, especially for a charity as wonderful as this one, you really can’t do a half-hearted attempt at working. The problem for me, is that the work is making me exhausted and stressed…..and I know that stress is a bad thing for myeloma and is more likely to make me relapse. Which ironically makes me more stressed as what happens if I ignore how I feel and get ill! 

I’m talking to them as we speak so they know how I’m feeling and hopefully we’ll come up with a resolution in the next couple of weeks. But I know deep down that I can’t keep things up as they stand at the moment. Fingers crossed we can make it work…..I love working and I love working for them, but the last thing I would want, would be to be a burden to a charity that uses its fundraising for such a good cause. I don’t feel I can expect anything from them, as it takes away from the people that we fundraise for…..sort of defeats the objective!

So watch this space to see what happens moving forwards….I can’t bear the idea of being out of work again as I’ve loved the independence of working and bringing in some money to the house…we’re off to Morocco in August and who know’s if we’d have afforded that without me working. But it isn’t worth getting ill for….

And a big sigh of relief….

For the first time whilst writing this blog, I’ve held something back over the past couple of months. I haven’t been 100% well. Nothing major, but enough to worry me that it might affect my new role and make me have to rethink the whole thing. But the good news is that it is all ok now 🙂

About two months ago, I had been ill with coughs and colds and feeling pretty sick too. I couldn’t work out what was going on but when I went to my monthly hospital appointment, I found out that my neutrophils were down at 0.56, as low as they had been when I first came out of hospital! This basically meant that I had pretty much no immunity and that I was picking up every bug that was going and was unable to fight it when I had got it. What would make someone ‘normal’ feel slightly unwell for a day or two, was making me feel rotten for weeks!

I didn’t worry too much. They gave me a course of antibiotics and 5 days of G-CSF injections which boost the production of stem cells and therefore boost immunity. And they took me off revlimid for 2 weeks. Revlimid is the maintenance therapy that I’m on – they believe that it extends the length of remission so as you can imagine, I want to stay on it as long as possible. But the downside of it, is that it lowers your white blood count making you susceptible to infection. Since my transplant, I’ve always hovered around the ‘critical’ point, but never dipped below so this was a bit of a bolt out of the blue.

Anyway, I left the hospital that day expecting to go back 2 weeks later and find out that I was ok again. But when I went back, despite the injections, I was still below the ideal level at 0.8. I can’t really explain how gutted I was about this. I was so worried that they wouldn’t be able to rectify the situation without taking me off the revlimid. And whilst I knew it was irrational (and probably untrue!), I thought that this was see the beginning of my relapse. This all paired up with the fact that I am due to start my dream job, sent me into a bit of a spin. It all seemed so unfair. They put me back onto the revlimid anyway (along with more injections to boost my immune system and hopefully stop me suffering from a further drop of my white blood cells from the revlimid). But I got ill again…and it all felt so unfair. Luckily my consultant was brilliant (as always!) and just told me to stop taking the revlimid for a few days and to take more antibiotics. And I started to feel better….until I started the revlimid again 😦

So I went to my appointment yesterday half expecting the worst. I was starting to ready myself for having to lower my revlimid dose, or even to stop it. But my levels are back up to 1.5 which is great…..I had a huge smile on my face! It looks like perhaps they’ll keep me on ‘once a week’ injections to try to prevent me becoming neutropenic again, but I can cope with that if it keeps me well. And I get to stay on my current dose of maintenance therapy – long live the remission!

Hopefully this all means that when I start my  job next week, I will be as well as any other individual in that office – the last thing I want, is to be a burden to them in any way at all. I had told them that my myeloma did not affect my ability to do the job and I truly believed that, but this illness had started to make me question it. Now I am confident that it will all be ok again.