Friday, October 12, 2012

Doing the "Poopie" Dance


It has been to long…
It has been to hard…
And there had to be too many difficult decisions to be made…

Down the drain and/ or toilet bowl goes the “upbeat attitude” for the fifth time that day because another set of pain killers did not want to do their trick and since going to the bathroom and trying to perform a solid #2 (which yes can actually be a relief for some people, especially after 10 days…) Life just starts slipping away…

And it did.

 
Somewhere on or around the 14th day of this past beautiful September month Bastiaan “stuffed” me in the BMW. I wasn’t really at the point of complaining anymore, I was just ready to head for the biggest besets tree and show everybody that I was NOT afraid of dying but that this pain & suffering and hurtfulness needed to stop. For everybody!  Not just me…

Of course I did not drive, and we arrived safely at the hospital  with Dr Nala, She was fast, no crazy questions, no accusations, only understanding and a,” what are we going to do now attitude?!”  About three weeks before this horrible Thursdays we had started the new drug: Yeroy (Maybe you have seen the pics on my Facebook website as well as the Love For Leontien site, Thank you girls!) and we were feeling good about it.

Yervoy is a biologic therapy so it it’s not a “chemo” and it works differently but the main goal of course is the same:  to “kill” all the little nasty cells and live a long and happy life. But three weeks into the therapy I had was having some pain in my shoulder.  I did not think much of it because, me being me, I just felt the need to mow the ENTIRE yard the day before…  Well… we have a really nice lawnmower and the sun was just about down ,  it was a good day… so I thought why not…? Besides the side effects were not that bad, a little nauseated, tired, constipated, a little of everything but nothing really worth mentioning… I was doing fine…

But I really did feel a little “whipped” after I got off of the lawnmower, but no worries…  No “little” lawn is going to bring me down!

We decided that we could start with round two of the Yervoy, because the pain in the shoulder was pretty annoying but I still thought it was going to be OK and the side effects were doable. The only thing that worried me a bit was that I had all these little “spots” popping up, like, they were everywhere.  But Dr Nala explained that it was a normal side effect and they had seen that happen in different patients before.

And then the pain got worse…

Bastiaan was on the phone every day with the doctor’s office to see if there was something we could use to make sure the pain went away. But it didn’t. And then I stopped eating. Well, I wasn’t going to the bathroom no more, and everything that did go down were pills and crackers while trying not to puke them back up…

The really bad part was when I did not know how to lie down anymore, that’s when you know you’re in trouble. If you don’t know how to sit, lay, stand, hold yourself anymore that’s when your hubby says “enough is enough” and will take you to the hospital.  Even though you still think you can though it out…

That day Dr Nala looked at me for 2 seconds and says you are staying here with us.
By nightfall we had done all kinds MRI’s and CAT scans, and other tests and they had put me on some serious pain medication. And then morning came…

And results…

Seven weeks ago my brain was clean/clear/empty (yes,  I do  remember joking about it being blond and all…) in other words it was fine…

It is not fine anymore. They found little cherry tomato size tumors in my head.  And not just one, no there were five of them, besides multiple little ones. Also the found out why I had so much pain in my shoulder, it was because some other little tumor was  pressing up against a nerve in my spinal column which caused the excruciating pain.  We did decide that day that we were going to do radiation on the head as well as the spinal cord, because the chance of me getting into major problems with one of those brain tumors was just to big. Doing the radiation on the spinal cord was an “easier” decision because it would mean, hopefully, less pain…


We did 10 days of radiation (I even got my Certificate, that I completed the treatment, whoohoo!!!)
We started eating again as soon as Saturday! But only the GOOD stuff, like fresh fruit, whipped cream, fries, chocolate cake, chips, you get the picture…

And yes after 13 days of not being able to go to the bathroom I have to say actually did a little “poopie” dance!!! On the toilet, by myself… didn’t think anybody needed to see that… but I did it anyway!

Bastiaan took me home
It was a good day…

A lot has happened since and I am really trying to get everything on paper, but currently I am on 20 different medicines and I sleep a lot. If I am not sleeping we have been so blessed with family and friends that come on over or take the time to write or call, so our house is never really empty…

And I do look at the Flowers for Leontien Page  & The Love for Leontien Page  (please go and have a look!) a lot and that I haven’t written you does not mean I forgot about you it just means I’m running out of time… Thank you so so much for your support,  I really would have been a little bit lost without all of your prayers and kind words…

Since getting out of the hospital and now a lot has happened yet again... And i am not quite ready yet to put that down on paper so you have to bear with me, yet again... a little bit longer...