Mixed feelings and good results!

From previous posts, you’ll know that my blood and urine results have all been very positive. They take about two weeks to be sent away for analysis. So the other day I called Sarah, one of the specialist nurses at the hospital, to get the most recent results for the light chain assay (blood) tests from 3 May and yet again, it’s great news!

07/02/11       Kappa 4309, Lambda 9.7, Ratio 444

22/02/11       Kappa 802, Lambda 10.04, Ratio 79.88

07/03/11       Kappa 129.66, Lambda 19.52, Ratio 6.642

04/04/11       Kappa 29.97, Lambda 28.81, Ratio 1.04

03/05/11        Kappa 23.04, Lambda 23.71, Ratio 0.97

That the ratio between the Kappa and Lambda light chains is remaining around the 1:1 mark means the drugs are doing exactly what’s needed and this is the best possible outcome. I was also feeling very well that day, so I was very happy. 😀

The next day I went for a 16 mile bike ride with a friend along the Trent Valley Way, which was a really lovely if rather weather-full day – we put on and took off various wind and rain protection garments several times. Very near home on the way out, I managed to skid on some gravel and fall off my bike – no bones broken or fractured, only a bit shaken and a grazed elbow. I hastily repaired to the couch to catch my breath and calm down, changed my top and we set out again half an hour later, with no further upsets.

I think the cycle computer transmitter on the wheel spoke must have got knocked out of place when I fell, so it wasn’t working and didn’t log the distance we covered. When we got home though, I found I could map the route on the Sustrans website: Sustrans route mapping and worked out that we did 16 miles… I have to say, it felt further due to the bumpy surface – stones, grass, woodland paths.

I noticed a few times recently that I can forget for long moments at a time, that I am “ill” – feeling almost normal, whatever that may be. I was not feeling as tired – no need for naps during the day, not feeling as achey, so taking less pain medication, my appetite and sense of taste a lot better.

However, on this most recent four days of Dex (steroids), I’ve been very disappointed not to experience my usual high of pain-free giddiness and boundless energy. Instead, I’ve been a bit mentally hyper, but without the physical energy to match it, so feeling slightly shaky and very emotional – bursting into tears several times a day and getting quite sleepy in the evening, with bouts of insomnia in the early hours of the morning. Boo! 😦

Anyway, back to the results… I am currently on the fourth cycle of initial treatment and am due to see the consultant again on 23 May. It’s a week early as the following Monday is a public holiday. Sarah has just confirmed that we WILL be discussing dates for inserting the Hickman line and following that, the whole stem cell transplant procedure, although we may not be able to arrange the dates for this on Monday, which makes other arrangements, like the big family celebration for mine and my cousin’s impending joint 50th birthday party kinda hard to sort out.

When I spoke to Sarah, I was feeling really good and her advice to me was to enjoy as much as possible these next few weeks while I am feeling so well. Will do, Sarah! As much as I can and the stupid annoying changeable drug effects allow me. 😛

Some of my recent bout of emotions may well be the increasing imminence of the forthcoming procedures, which are really very daunting. I don’t even feel like joking about baldness or planning parties.

However, I did have a slightly Dexy time of it in Nottingham today… I went to support a friend to do some bureaucratic chores… and managed to come away from a lingering visit to Fopp with some new music and a brief stop at Schuh ended up with me wearing a new pair of totally unexpected summery suede boots. (Let’s not even talk about how much money I spent – but at least no parking ticket this time. 🙂 ) Woo hoo!!!!

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2 Responses to Mixed feelings and good results!

  1. Wendy Duffield says:

    Hi Jet,
    thats great news about your latest results, you are “normal” at least from a medical view point! I am very impressed by your 16 mile bike ride too. I shall have to dust down my bike and have a go. Hopefully when you have your next appointment you will get more of an idea of the time scale for your SCT so you can plan something for your 50th before or after. After stressing about my 50th I did have a nice time over the weekend. Low key but enjoyable with lots of cake and some great fireworks.

    Bye for now

    Wendy xx


  2. xxxtube says:

    Excellent Blog !!!!


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