Thursday 28 April 2011

CTRL, ALT, DELETE

As I sat down to write today’s blog entry my laptop froze before I had a chance to get past my log-in page.  As any IT expert would tell you, you administer the trusty CTRL, ALT, DELETE restart manoeuvre and Bob’s your uncle, your computer behaves again.
If only things to do with CML were that simple! Where are my restart buttons? Why can’t it be that easy...
...To say I have had a bumpy couple of weeks is an understatement. I went back to Hammersmith Hospital last Thursday expecting a bone-marrow biopsy in my left hip, what I ACTUALLY received was a bone-marrow aspiration in my sternum. With only a local anaesthetic!
Now, to be fair, the actual process of getting marrow from my sternum wasn’t too bad; I think the anticipation of such an invasive procedure being so close to your face is worse than the actual event. It was slightly more intense than the hip biopsy but over more quickly and we got lots of marrow.  The icing on the cake is that you get way more sympathy with a big white plaster on your chest that looks like you could have a 3rd nipple hiding underneath. Chris came in with me for support, he held my hand, reassured me and had a good boy-gawp at what was going on.  I would certainly reassure anyone who has to go through this that it isn’t that bad. We were confident that we had enough marrow to get a result and get going on the trial.
Fast forward to today. I was going back to Hammersmith with every intention of collecting the Ponatinib pellets to start the trial.  What I ACTUALLY got was Prof. Jane Apperley telling me that they have picked up an additional translocation in my chromosomes.
A human body cell, such as those that make up skin, kidney tissue, heart tissue and blood vessels, all contain 46 chromosomes. The chromosomes are arranged in pairs, so that each cell has 23 pairs. My CML is caused by pieces of the 9 and 22 chromosome pairs breaking off and swapping round. (Written as:  t(9;22)). In addition, I now also have a small percentage of cells which are showing the same thing happening between my chromosomes 3 and 21. (Shown as t(3;21)).
We are not sure of the true meaning of this additional translocation, but we all feel that it would be better to treat immediately rather than wait for 3 months to see if a new drug MIGHT work against it. I am trying to keep the odds in my favour, so the decision has been made that I am to head for a bone-marrow transplant in the next 4-6 weeks.
So there is it is, I am heading for not just a restart of the machine, but for a full system wipe and reboot. (Let’s hope I get upgraded to the new XP version with added anti-virus technology.)
I will never become a true lab rat. Sorry folks. 
At the moment I am surprisingly calm about what’s going on, I think I am ready to get rid of this disease squatting in my body.  It has truly outstayed its welcome, like a long lost relative that comes to stay and never leaves. It’s time to say goodbye for good and change the locks.
The next step is to contact my bone-marrow donor in the USA (who from here on in will be referred to as Brad Pitt) and find out when he has a blank date in his diary to donate some of his good marrow. Brad, if you are reading this, I am forever grateful, I hope we can meet one day.
I mentioned earlier in this blog that the past 2 weeks have been a rollercoaster. So far I have told you the lows, but in-between I have had some great highs. Being off my drugs has allowed me to revert back to my pre-diagnosis days.  I have been spending some fantastic time with family and best friends, burning the candle at both ends. Nights out in London, lunches out, BBQs and lying in the summer sun. Absolutely perfect. 
The support network around me makes me feel like I can conquer the world; my husband, my family, friends, neighbours and work colleagues. I have such strong foundations and amazing people at my side, how can I lose when I have already won?
Bring it on.
To be continued...
x

2 comments:

  1. Oh Michelle, what a shock, and we had been so looking forward to hearing all about your lab rat experiences. Since I and others have ventured into the BMT void before you, I can reassure you that there is light in there and I'll use mine to help guide you through. Can I refer to my donor as Angelina from now on please? Sadly, I can tell you, you may end up with their blood group but you don't get their looks in the bargain too. I wish you all the best as you come to terms with this change of direction and know you'll beat that darned CML one way or another.

    Loving thoughts, Cathy

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