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?

...

Back in the land of the Living...

My gosh…

Cancer Butt Kicking is HARD!!!

I remember the first day in the hospital

I remember the last day of being in the hospital

I remember it being so hard to breathe

I remember Bastiaan being there… always…

When you gain about 7 pounds in 3 days you look like a tomato. And no I don’t mean a cute little tomato  on a little green limb but a FAT, I do not feel happy RED ( called the IL-2 tan) I’m almost falling of off my stick tomato! Being like a tomato is not a good thing. Especially when you keep telling the doctor you are feeling “peachy”…

I got 12 treatments in. They (the doctor and very sweet nurses) say this is a really good thing cause the total you can get is 14 treatments in the first round. We started Monday the 17^th. Every eight hours they would give me the Inter Leukin, but by Thursday I had accumulated so much fluid that my heart had a lot of trouble pumping all my blood to my organs.

A little birdie told me once that it is pretty important to have your heart pump blood around too all your organs all the time...

So Dr Logan and his team stopped treatment and they focused on “fixing me up” quick so my heart didn't get crazy ideas.  Which I think was a super idea!  We stayed in on the Intensive Care Unit until Tuesday the 25^th instead of Sunday the 23th (like normal IL-2 patients) because they wanted to make sure I was all right, that my heart was doing fine, and the fluid was decreasing. Also I needed to get my strength back and get of off the oxygen, (like those little old ladies you see in the movies toting around one of those oxygen tanks… although I didn't walk at all at that time…) and start breathing normally.

I don’t remember very much of being in the hospital, only what my family tells me I did or didn’t do. But maybe that is better. It must have been very hard on them though….

Today I have been home for a week. I can shower by myself (WHOOHOO!!!), I can breathe, read and write again (Oh Yeah Baby) and I can talk walks outside and see Classic, Jones and the crazy cats. I have been to the farm for the first time yesterday and seen our girls...

Life is good.

But this was only part one.

In order to do the full Inter Leukin Treatment (and kill kill kill all those nasty cells) we have to do another round off 5 days Intensive Care…

And, well… we are not sure my heart can take another round. So this week were going to fuel up, get strong, get stamina back and learn to walk to the other side of the house and not be totally exhausted… (no, our house is NOT that big…) AND do a stress test. This stress test is to see if my heart can take another round. They are also going to draw some blood and we are going to see Dr Logan again.

In the mean time I just am overwhelmed (in a GOOD way) with your prayers, cards, gifts, presents, flowers, bears, cookies, socks, pirate games, monkeys in a jar, lollypops, crèmes and all the other goodies you guys sent me and continue to feel very much blessed and loved! You Crazy American’s really do things bigger and better!!! Haha!

THANK YOU!!!

...

Ready... Set... Go...

Ok, you better all get your undies and toothbrush gathered cause you get to visit!!!

The Plan (and yes “The Plan” might change a bit when we move closer to the "starting date") but we have decided on going to Indi. Yes I know this might come (a little bit) as a shock and truth to be told, Chicago was really nice, the people were very sweet and the doctors very knowledgeable but we felt that we wanted to be a bit closer to home...

I really need all of you, my family, my friends, my buddies (Classic, Jones and the cats) and girls (our cows)  to beat this thing with me and I thought I would feel kinda lonely in Chicago... And yes this may seem a bit silly... But i feel stronger this way and ready too fight, so Bastiaan and I thought this would be a good reason because we need to be as strong as possible. In Chicago they told us that we always could come back if necessary, which was a good and nice thing to know.

So, while we decided on where to go, more tests were done, more test results came back and all the treatment options were presented to us. Out of the three options we have chosen for Inter leukin IL-2, this is a fancy smancy name for a shitty (yes I said it) drug, that hopefully will boost my immune system and knock all those nasty cells out of my body. And no, I am not a nurse or doctor so I might not have used the perfect terms to describe it but I think you get the whole picture if you click on the link (which you don't have to cause its no fun anyway).

The Plan in Indy is as follows: We are going to go to the hospital, I will get admitted to the Intensive Care Unit and I will stay there a whole week. They only do five days of treatment, every eight hours, but we'll need the two extra days to recover. Then we will go home for a week, rest... And we will be back at the Intensive Care the following week and we'll do it all over again, if (and this is a big IF apparently) my body (and mind) can stand the treatment.

The side effects are pretty nasty, so I am not going to name them (The list is too long and a tiny bit depressing…). The good thing is that we will have all day visiting rights!!! Whoohoo... Only two people at the same time, but well… I was pretty happy about that!

Bastiaan and my family can stay most of the time and if they need to go home for a bit, (maybe to drive around in some tractors, look at the cows and talk to all the boys, which can be pretty relaxing after spending a lot of time in the IC) somebody else can come for a bit and stay with me...?

There you go, that is The Plan. Having a private party while doing some MAJOR cancer kicking in Indy while wearing our scull panties and new PJ’s!!!  It sounds good to me…

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