View on Cancer

It’s getting heavy, folks.  Now Joost is realizing the journey to wellness is going to be harder than he thought.  We don’t want to sound naïve here because we knew it was going to be hard.  And it has been hard already.  I wouldn’t say we became complacent either.  It is just hard.  The pain is unbearable.  The numbers are all over the place and every day we have a new analysis to make on what they could maybe possibly mean.  Nobody has much insight into all this either.  So we are preparing for it to get worse before it gets better.  I don’t mean to bring it down but this is the reality we’re facing for awhile. 

“And how are YOU doing?”  I get this question a lot and I’ll attempt to answer it here.  Overall I would say dealing.  There are so many distractions in a day that it is hard to focus.  Sleep is becoming ever more elusive as are little things like showers.  I know, I feel disgusting but what am I going to do?  At least it rains here a lot so I can stand outside ha ha ha.  Bad joke.  The kids are somewhat clean at least.  But here is the thing: it is impossible to make time during the day to take care of even the basic things.  If you asked me what I did today I wouldn’t be able to tell you.  It sounds like nothing but I’m extremely exhausted.  That is an understatement.  I always have the feeling of moving underwater in slow motion.  Now my standard answer to the how-are-you-doing question is “Same shit, different day.”  This is a new spreekwoord (cliché) for the Dutch so at least I can introduce a little of my culture here now.

The kids are busy attaining new skills.  Katy’s is language right.  It is so much fun to talk to her.  Her insights are overwhelmingly funny.  The other day Joost asked her for a kiss.  She replies that she is out of kisses.  Joost asked how many she had, and she said, “Five.”  Then she goes on to explain she has to go to the store to buy more then Joost can have a kiss.  Sam is about as active as they come.  And he loves his mama.  The majority of the time he is squirming in my arms and he’s strong!  It’s hard to keep hold of him.  His favorite activities are playing the piano or guitar and singing with Joost and playing chase with Katy.  He is still absolutely the most relaxed (and handsome) baby.

We go to AMC tomorrow for new blood.  Joost needs a shot of energy so this is much needed. 

Thanks for tuning in…. and until next time….

Cheers, Jenn

This photo represents what Joost’s main activity will be in the coming weeks.  Therefore Joost won’t be writing in this blog for a time.  “Why?” you ask.  In a nutshell, his white blood count is too low so he is on a low dose of the Sutent.  What this means so far is that he is quite tired and has extreme muscle pain again only this time in his shoulders.  Pain management is in effect and the painkillers are making him extra tired.  He needs to be careful with energy distribution so he’ll keep calls and visits to a minimum also. 

I’ll get on the ball again and try to write some myself in the meantime.  The only time I have usually is in the late evening when I am winding down.  This could make for either some really interesting reading or really boring depending on your perspective ha ha ha. 

Thanks to everyone and I mean everyone who gives us even a millisecond of a positive thought.  And of course, thanks for your understanding.

Jenn