Old Hands...

My hands look like the hands of an 80 year old lady

My hands hurt like the hands of an 80 year old lady

I sometimes feel like a lady who has lived 80 years, just by looking at my hands…

And yes, this might have to do with the fact that we were in the emergency room for over ten hours… Well… and the fact that they used my hands as a (several) pin cushion(s)… And, maybe, the fact that we had to stay in the hospital (again) for over 10 days because I had an unexplained fever… Oh… and the pneumonia that we didn't know I had…

Good thing I that I can open my own bottle of water again, with these old hands, it is kind of a bother to keep asking people to open up bottles of water when you are supposed to keep hydrated... (Thank You Mommy, Daddy, Hanneke, Jan Willem, Megan and of course my everything: Bastiaan!!).

It is also a good thing too that I am home. I like being home. Bastiaan and I have been throwing this idea around to rent a big camper and to go “see” places (you know, normally we would do this when we would be 70+), but plans have to be adjusted sometimes... I like to be home for now.

Besides opening water bottles it is also a nice thing to be able to “do” things again. Like (and this keeps repeating itself for some strange reason…) going to the bathroom by myself without falling of the “pot”, putting socks on (I like my socks and I have not one pair of toe slipper thingies so, I need socks…), playing with my new phone, getting in our lovely bathtub, and more important, getting out of the bathtub… and typing new blog posts and doing the “Facebook thing”, gosh, I hope they don’t drop the “timeline” disaster on me any time soon…

I can’t vacuum the house yet, but I’m not sure if that is a good thing or a “bad” thing. Hehe…

We are having a hard time (not that it was not hard before) but we got quite a shock from the horrible hospital experience two weeks ago, don’t get me wrong, the nurses and (most) of the doctors were really nice, it was just the overall experience of being a test bunny that got to me and Bastiaan & the family (and the pain). I do not mind being a test bunny if it will help other people with this grueling disease but… just don’t let me FEEL like a hurting test bunny…

And to be completely honest, I do not know how many times I can crawl out of a 10 meter deep hole (hmmm that would be 33 feet…) again…

Yes, we had to stop the Zelboraf treatment because of the pneumonia & fever (which they never really figured out after giving me 7 different antibiotics; "which one did the trick...?", and yes the docs really like me to start again as soon as possible, but… I just don’t feel ready yet…

Maybe if my hands look like my hands again instead of the hands of a 80 year old lady and more important they don’t hurt anymore, and I have seen me some cute looking girls (almost as good as seeing a beautiful black stallion ;-)) at the dairy, we’ll be ready to do round number four…

Maybe. 

I just love being home right now.

...

6 weeks and two days ago

6 weeks and two days ago…

See… I have been trying to write.

Well, I have been trying in my head really really hard and it all sounded perfectly fine… Somehow it just didn't quite make it onto the paper, or well, because we do live in the modern days, on my perfectly fine purple laptop…

Now I have so much to tell you that I don’t know where to start!

First: I missed you all very much!

Second: We got more news last Tuesday (six weeks ago), and yes my plan was to write this down all nice and fuzzy, reason being everything seems much harsher on paper… like, if you tell a person that is sitting across from you, you can tone things down with good facial expressions or smile even more bright when you deliver sad news. When you write things down you can smile a comforting smile but no one is there to see, and thus… much harsher…

Not that it is really bad, it could be worse, but it was not what we have been hoping for either.

So, here we go: rib, breast, spine, lung and liver area are still stable; this means nothing got bigger, and nothing got smaller. The spot in my small intestine got smaller, which is good news and this might indicate that the IL-2 is working, but the spot around the ovary got a bit bigger, so were back to square one, more or less.  Because the scans don’t really indicate what it is they are seeing (they just see something there that should not be and is bigger than a month ago) we need to do more testing next week.

New doctor, new procedures, new nurses, which I am sure are going to be wonderful (the doctors and nurses, I don’t know about the procedures…), but still it is a bit scary. We were hoping the IL-2 just would have done its job and made everything smaller (or made it disappear all together) but maybe it is just a bit slow and needs some more time.

And well, time is a bit of an issue

Not that I don’t have time, I have plenty (or so I like to think) but this “giving it time” thing is really stressful!!!  And thinking about being sick 24/7 doesn’t really make you feel better or makes you go back to work, writing, riding or relaxing…  So… it is even more stressful to be stressful.

Trying to be stress free is hard work.

But my sweet friend told me in a very stern voice yesterday, that I better get my act together and be a little selfish for a change, stop worrying about everything that I like to worry about and GET BETTER! She said; everybody would understand if I took a little break every now and then to fight this nasty fight because if I didn’t, they (as in my family and friends) would be a whole lot more upset if I didn’t take these little breaks and not be here not more because I wasn’t a bit more “selfish” and take the time to heal and kill some nasty cells…

Oh well…. that was a bit of a rambling thing, but I think you get the picture, right? Less stress, more cancer kicking in the butt and getting to meet lovely new people (nurses in this case)… hehe...

Today it has been over six weeks since I wrote this post above...

I had to go into surgery the next day after writing this.

They took out my left ovary.

We did new scans.

All the tumors grew since January.

The IL-2 did not work.

This Monday, and yes with this Monday I mean Monday the 5^th of March 2012 we are going to start with the new drug, recently approved by the FDA, Zelboraf.  And I am going to try my hardest to keep writing, just because I love it. Because I love life, and because I love you all. Yes this sounds a bit creepy, but it is meant well…

Third time is the charm, right?

...