Mmmmm.....

Don't quite know how to start this one. I have a lot to say, but don't know where to begin....
Perhaps the facts first...
I have missed out on the b-raf trial. The disease in my heart makes putting me on the trial too risky. BUGGER!
So now, medically, my options are slim. Best case scenario is have another 2 rounds of DTIC/Dicarbizane/Chemo whatever the hell you want to call it, and the tumours in my heart shrink after both rounds. Then they can put me forward again for the trial. Given that the disease progressed so much after the first round nobody is holding out too much hope for this one.
Possible, (and quite likely), scenario is that the chemo will do nothing which leaves me with weeks to live, and that could be days to weeks based on the volatility of my heart. Apparently it is quite rare to get cancer in your heart. Of course it happens, but not often. Thank God I have a very experienced oncologist because he is the only one who has seen it before. All the other doctors and nurses have not been exposed to it before. I am SPECIAL!!!
The scenario I am aiming for right now is that the 2nd round of chemo shows slowing in the progression of the disease. This will convert the weeks into months, and we can reassess after each treatment weighing up quality of life, time and side effects.
If I can at least slow the progression it gives me more time to get stronger and fight this beast. I figure that's my best option at the moment.
Until I know for sure that I can't get onto the trial, I won't explore alternative treatments further than I am already with juicing, meditation and apricot kernals because I don't want to jeapordise my chances of getting on the trial because clearly that is my best chance of survival.
Obviously, I made the decision to try a 2nd cycle of chemo....what do I have to lose?? I had that this afternoon so now I am back on the emotional and side effect roller coaster again. History has shown the more rounds you have apparently the worse the side effects hit you so brace yourselves for some whinging. I am the biggest sook you will ever come across in your life.
They had to stop and start my chemo infusion 5 times this arvo because it was stinging so badly. In the end they had to move the cannular completely to a new vein that was bigger and could take the drugs!! Such a woos I am. I daren't say it today in the nurses presence based on her reaction last time.
Anyway, there are the facts, with just a bit of my opinion mixed in.
I am sorry, if like me, you were looking for some good news....sadly it hasn't been forthcoming. Jason and I are just beside ourselves. It seems silly, but we have been trying so hard not to hear the prognosis, all the bad scans and opinions have really knocked us for six. I actually expected things to be better! HA!
As you would expect, I am not in the greatest of spirits today, at the bottom of the dip in the roller coaster you could say. And when my angel of a little boy says to me with tears in his eyes, "Mummy I don't want you to die, I want to be able to hug and kiss you properly like now", I wonder to myself where the rhyme and reason in this whole completely screwed up situation is. WHY????? How can you hurt him so much? Poor little Matty, he is doing it really tough.
Jason, Matt, Andy and I each drew the cancer tonight and blasted it and tore up the bits of paper to toss them in the bin. It is an activity that was suggested to help them deal with what is going on. Matt drew my heart with the cancer in it......pretty switched on for a 5 year old hey!
It seemed to work. We were all booming and tearing and laughing in the end.
I just want to send a little thought to the Mum's reading this....do treasure every moment you have with your kids. Man, we know how quickly they grow up, but when you think one day you are going along living your life (the camper trailer) and the next day it all gets taken away. It's scary. It's certainly hard to treasure every moment of them all the time, but even the crappy times are good, at least you are together and communicating (just maybe not too well!) Off my soapbox now.
Well, bed time...the morphine is really kicking in especially as I didn't get my nanna nap this arvo!
Sorry for the bad news and take care xxxx

NEVER, NEVER, NEVER GIVE UP