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 14^th 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...

…

Round Two starts Today...

OK, today is the day.
Bastiaan and I are heading back to Indy...

My little sister came back from The Netherlands again for a couple of weeks to support all of us and I am pretty sure my mom, dad and little brother are going to do an awesome job keeping the farm running. Making sure the boys (our employees) and our girls (our cows) are getting the best of everything.

Still incredibly scared but ready to fight again if the doctor says we are going to go for round two but since we are not quite sure what the doctor is going  to say (probably "yes, let's do it") it is not only scary but also a bit nerve racking...

It might be a while before I see you all again. But I am gonna assume it will be not too long...

I'm gonna miss you!

In case we are a little bit longer gone... Bastiaan might have given an update on Love for Leontien


...

You got to be kidding?!?

What I believed at some point as simply not possible, just came with time... I can walk from one side of the house to the other, without toppling over from lack of breath… I can even walk to my mom and dad’s house (if I really wanted), three quarters of a mile down the road! 

Whoohhooo!

The stress test went well. Doc says I am ready for Round Two…

I don’t think I am ready for Round Two…

Last Thursday I was sleeping in a little bit, like I have been doing since I got back from the hospital and I was having this incredibly annoying, please, please go away, itch. One of the side effects is itchiness and for the last week, somehow it just doesn’t wanna stop.

I rub myself with five different lotions but they all seem to work a couple of hours and then I have to undress and lather up all over again. But Bastiaan and I reason this to be a good thing, it just means that the chemo stuff is still doing its thing and thus Kill, Kill, Kill all those nasty cells…

So while I lay in bed, scratching myself everywhere until I am nice and red all over again, thinking by myself that I really need another bottle of lotion, right here besides my bed,  I feel something  (feeling something  that wasn’t there before on your body is NOT a good thing)…

YOU GOT TO BE KIDDING!!!????

I jump out of bed towards the bathroom and check again.

It could be imagination, you know. Very common amongst patients to feel things that are not really there just because they are scared that something is there…

There was defiantly something there.

And then I got a little angry, well and then MAD and then even MADDER (don’t know if that is a proper English word but my spelling check says it’s ok…) and then I got REALLY REALLY upset.

How come that we are doing this immense-awful chemo stuff, which almost killed me (and I thought the whole plan behind this chemo thing was that I was NOT going to be dying any time soon) and now I am feeling a little bump in my armpit…

Let me tell you this is NOT very uplifting, hopeful or encouraging while trying to Kick Cancer in the Butt.

I called IU in Indianapolis but they didn’t pick up the phone so I called my Dr Nala. She told me to come right away and she would have a look (did I tell you she and the nurses over there are just little angels???). Bastiaan and I rushed to the hospital and Dr Nala checked the little bump. Yes it was defiantly there and no I wasn’t just in my imagination (which I of course new, but then again I have been wrong about my body in the past…). Dr Nala got on the phone and checked with my doctor at IU and together they looked at my CAT-scans and discussed the situation.

Their explanation: It had been there before, I just might not have felt it any sooner and/or because of the chemo it might have enlarged a bit or got closer to the surface of the skin and that is why I felt it now. BUT that it did NOT mean that the chemo is not working and/or that we are not doing the whole kill, kill, kill thing, so we shouldn’t (never ever) give up!

I am scared shitless.

 (I promised myself I wouldn’t curse in my blog… I am promising you now it won’t happen again)

...

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!!!

...

I'll be back!

OK...
I think I'm ready...

I will see you in a week or so...!!!
Well...  Maybe sooner if you are up for a pajama party in the hospital.... ;-)

We will see how things go and I'll try to keep you updated! I hope you have a wonderful week and make sure you love every moment of it! And don't forget, I'll be thinking about you all!!!

Big hugs
Leontien




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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…

…

Arretjes Cake = Comfort Food

I wanted to do this for a long time so, here we go! Every gal or "though" guy needs his or her comfort food every now and then to keep on going, no matter what the doctor says!

A couple of sweet people who where brave enough try the pepper and ice cream… This recipe is  much less exciting, but still very very good and no oven needed! If you have been reading my stories for a while you might know that I love a Big Mac every now and then, but this cake is just right up there on the list… The only difference is that this is a “grandma used to teach us” authentic Dutch recipe.

I promise you if you finally have all the ingredients in house (which are not too complicated to get) this should NOT take more than 15 minutes… Oh well maybe 20, depends if you have your kids, nephews and nieces, friends, friend’s kids or grandma herself helping you with the “smashing”…

What you need:

·         A bag of animal crackers (you only need about half the bag but the rest you can eat while you are “cooking”)…

·         12 tablespoons of confectioners powdered sugar

·         1 egg

·         5 tablespoons of Nestle cocoa (I am firmly against everything Hershey….)

·         And butter,  about 12 tablespoons of it, as in normal Imperial  (at Walmart) sticks of butter

If you double everything you get a nice cake form full of yummy sweetness...

How to make it:
Break  (smashing is even more fun) all the animal crackers into two or three pieces. You don’t want to make them too small but if you keep them as a whole they are too big. Melt the butter into a fluid mass. You can do this in the microwave (use a lid) or gradually on your stove. Add the sugar, cocoa and egg to your melted butter. Whip until you have no more lumps. Then add the crackers into your mixture while it is still fluid.  Put the whole mix into a cake pan which you have lined with aluminum foil, to take the cake out more easily after its done. You need to use a LOT of crackers, remember every animal counts! Hehe…

You let this sit for a night, and yes this is the HARD part because if you are like me; a little (very much so) impatient you just can’t wait the 12 hours until the next morning…  Just wait about 5 hours and it will probably be fine…

The trick is to get it stiff/hard enough so you can slice the pieces like you would do a normal cake. But even if it is not very slice able it still looks pretty funny and it sure tastes good…

I know you are NOT supposed to count the calories in this cake, so I wouldn’t recommend to make it once a week… although it is very VERY addicting.

Now that I am a full time swimmer (we went twice in two days, whoohoo…) to build up my stamina and overall physique, to be better prepared to handle the side effects of the chemo (we probably are going to start soon) I think it is also very important to make sure you eat your comfort foods (yes, besides all the healthy stuff) soooo, what better way to do that with some authentic Dutch Arretjes Cake!

I hope you enjoy and please let me know the results of your Dutch "cooking"!

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Putting things in perspective

I wrote this post  in April 2010.
Sometimes i read it to try, to put things in perspective again. This last week has been a bit (read: a lot) of a challenge. Normally i can stay pretty positive and find a way to convince myself that I'm gonna be just fine. This is not one of those weeks.


What Cancer does to somebody like me...

One year, eleven months and somewhat days ago I got confronted with this awful disease. I can tell you, it wasn't and is not funny.

After several surgeries, lots of pain and fear I got 4 weeks of chemo treatment for 4 hours straight every day. When we were done with the IV's we did 48 weeks of chemo shots, 3 times a week, with one of the most terrible chemical substances that people have invented. Things lasted a bit longer because we had to quit a couple of times (weeks) because my body or mind couldn’t handle it too well...

Cancer does a lot to people... So does the treatment of cancer...

It makes you angry

Angry against the world, because every time you go to the hospital, the people that you meet are in their fifties. "Where are all the young people???" "Am I the only one?" Angry towards the people surrounding you. I doesn’t matter how hard they try, they can’t feel, understand or know what you feel. Even if they are by your side 24/7 in the hospital and at home, keep your hair up when you are puking your guts out in the toilet or when you do NOT want to say ANYTHING because you are to tired to the bone or when they hold you until the shaking has stopped…

Angry towards your friends, you thought they were there, but they are not. Angry towards you family, they do not deserve it, but to admit that to yourself only makes things worse. But most of all angry towards yourself. Because you just can’t understand why this had to happen. And if you could have changed it or prevented it. And of course I am MAD because I thought I could change or adapt to anything. I could do everything and I didn’t NEED anybody. Angry because it is not fair. Angry because it shouldn’t have to be this way. Angry because of all the hurt I caused other people...

It makes you scared
Scared that you never get off of the roller coaster of emotions, your sad, happy, angry and hurt, and all over again. Afraid that with every bump, every little thing that hurts, every little change or little mold, it is coming back... Scared that all the statistics are true. Scared because we have to go back to the hospital every 3 months the coming five years, and you NEVER know what “they” are going to say... Afraid you can never have any little kids, and even if you would, and you would die within two years, Bastiaan would be all alone with that little bundle of love... I can’t do that... Afraid that you can not give the people, who you love the most, what they deserve.

It makes you sad
Because live passed you by for the last two years and you can not get it back. Because you wanted to build friendships but didn’t have the energy to do so. Because you wanted to face the mistakes you made in the past, but that didn’t work out. Because this was supposed to be the new country with the new life and possibilities. Because we are shallow and you do not realize that until you have a hole of 3 by 2,5 inches on you leg and so many other scars on you body you do not even want to count them. Because you are hurting of the scars that mark your hart. Because I, like so many others want to put problems, subject and other things behind us.

You Learn
That if you do not have anything nice to say, it is better to stay quiet. You do not rule the world, even if you think you did. Things happen for a reason, it will not help you if you do not accept them. Sometimes you have to agree that choices other people make are for the best of you. You can not run from whatever it is you are hiding from. It will come and get you eventually.

You feel loved and blessed
Because no matter what happens (your yelling, crying, being silent and everything in between) your family is there for you. Because the boy who wanted to go with you (because you felt the need to milk cows in the USA) has to deal with all of this and STILL loves you. Because people that you hardly know came up to your house and gave you food, money, a friendly smile or other things that would comfort you. Because of the friends that did stay are the ones you need to love the most in return. Because ordinary people with ordinary lives felt the need to pray for YOU! And wished you the best and MEANT it...

Whenever you are sick, your mom, dad, husband, brother, sister, family, friends and all the other people that care for you are a little bit sick too. And if they can fight for you, you should fight for them.

It makes you happy
For every day that you can complain, yell or blabber to your family. That you can look to your husband and realise how much you really love him. That every morning you can get out of bed, and you do NOT have to stay in that stupid bed! Because you can go to your work, because it is a dream come true. Running a large family operated dairy is a gift and blessing, and i am so proud that we can. That I can make choices about who what and were. And that every day, is one day is that I can enjoy.

For the first time since April 2008 I feel like myself again, although it is a totally different me. After 5 terrible days, because yes, they put you on all the meds, but how do you get off of them again!!?? Without sleep, with lots and lot’s of pain, and feeling like a zombie who just like a drug addict is missing out on his shot, and doesn’t feel quite alive, I got out of the shower.

And I am glad to be here...

...

Withdrawals….

Sometimes I watch tv.
Sometimes I even watch tv without really looking.
Sometimes I watch TV and I think by myself, “Why on earth am I watching this???”

I used to love Grey’s Anatomy. Bastiaan and I would sit down on Thursday evenings and watch it together. When I got diagnosed and the months after, during chemo, Thursday was the best day. As in that was the one evening where I would be almost completely  “present” and without uncontrollably shaking or sweating, most of the times anyway... Normally Bastiaan likes other shows than I, but this was one of our “Let’s watch together shows” and try to forget about all the bad stuff going on in “real” life.

Until Izzy (one of the main characters of the show) got sick. Guess what she got???!!! Oh, was so mad.

She could have gotten ONE HUNDRED THOUSANDS kinds of cancer. But nope, she ended up with my kind, and that was besides the fact that she was almost the same age and blond too!!!

The ONE evening during the whole week were I would crawl into Bastiaan’s embrace and were we would try to forget for an hour about the fact that we had cancer and just moved to a new country…

They had her, get my cancer!
We stopped watching Grey’s that night.

Getting on chemo is not the hard part. Being on chemo is not too good as in really, really (here you can put your own curse words if you use them) NOT GOOD! But we were in for a real ride after we got OFF the chemo!

On my dad’s birthday, October 9th, 2009 after 64 weeks of chemo I got my last dose. It was a great day and we even had a cake to celebrate. All it wanted was a Big Mac, but the cake seemed more appropriate. In the following days I was under the impression that now that I was off the nasty stuff, life would go back to normal in a swiffy. A girl has to have hope, right?!

That first weekend I got a headache. But I still had some of those great pills from the doc so I could keep going, suppressing that headache. I wasn’t going to let a little headache going to ruin my fine “new” life after chemo!

The next day I still had a headache. I didn’t help that I already to 4 of those “special” pills were normally I would be happy as a pumpkin in a sunny pasture after a half of one of those pills…

BUT I was stubborn and we needed to go shopping, at Menards. After 6 pills and lots of begging, my dad took me home, but it became clear, that home wasn’t the best place to be at that moment. And after my mom, dad AND Bastiaan found out I had eaten my little stash of “special” pills it was time to go to the emergency room…

The Bluffton Emergency room wasn’t the best place either because after a CAT scan and a HUGE needle and syringe of some kind of pain reliever (in my buttocks!) they sent me home… and I was feeling like that fat happy pumpkin again!

The next day, the pain was back! FULL FORCE!!! We skipped the emergency room in Bluffton. We brought out the big guns and went to the big city emergency room! I am not sure but the doctors there were a bit puzzled too. After several scans, including CAT/PET and MRI’s they found nothing, but I was completely overcome by this terrible pain in my head. Finally they gave me a shot (and yes this was even worse than the buttocks shot the day before!) in my spine! I never had a shot in my spinal cord before, and let me tell you this IS NOT FUNNY!

What was even more disappointing was that the shot did not work. So as a last resort they finally gave me a little cocktail… they had checked out everything and anything and were still afraid to numb any symptoms and thus figuring out what was wrong, but they were even more worried about the pain that I was still having. And no that cocktail was not a stiff drink, but a cocktail of pain relievers, and yes some big names like valium and morphine drifted by. 5 minutes after I got that cocktail I wasn’t even a happy fat pumpkin anymore I was just… floating…

They kept me in the hospital for five days.

Three of those five days are a bit cloudy because of my “not to make at home” special cocktail. But the last two were pretty “good”. The oncologist told me that what probably happed was the withdrawal from all these weeks of chemo, had something to do with this headache of mine (I am not even sure if headache is the right word, but for a lack of better word…) Gradually things went better and during the day I would sleep and I had visitors who would come and cheer me up. In the evenings I would watch TV. Books were too much of a strain, but the TV would do the trick and take my mind of things.

I watched my first “after Izzy”, Grey’s Anatomy episode by myself in that hospital bed. The sweet girl was gone, I believe she survived her illness but they “cut” her out of the show by moving her to another town or something. I’m glad she didn’t die. And yes my mom told me when I was little that I shouldn’t believe everything I see on the ‘tellie’, but I was happy anyway. There were just too many resemblances and i thought if she can survive so can i....

When doctors tell you that you are sick, you are sick. Your brain tells you that you are sick and you need to get better. This is a given. When doctors tell you that you are better, your brain doesn't always tell you that you are better... Especially when you can not do all the things u used to do, or have the stamina you had before, or seeing the thirty plus scars on you body. Basically your brain and body are having withdrawals from cancer. And then there is the worry of getting sick again that sometimes  is sooo overpowering that you "forget" that you are actually well.

I found it MUCH harder to be "better" than to be "sick". I know this sounds strange, but i can't describe it any other way.

I do not know this body of mine anymore. And i defiantly do not know this brain. Whatever those drugs did to get rid of the cancer, they, also "messed" ME (as in I ) up. I tell myself not to worry, I'll find "ME" again. It just will be a little bit of a different ME that i was 4 years ago...


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Crazy Americans! Smoking like a Chimney

Oh how I loved smoking!
Really!

If I could smoke just ONE cigarette whenever I would feel blue (as in extremely stressed) and then quit smoking again, I would do it in a heartbeat! Hmmmmm, maybe not.....

I used to smoke... a lot.

I started this nasty habit when I was 16 years old. Yes, the age where you think you are invincible and you can take on the whole world. My friends were smoking and in The Netherlands there was no official law that you couldn’t, besides it wasn’t that hard to get cigarettes. It started with a couple of cigarettes a week. Mostly when we would go to a bar or a club, or after school in the school yard, hanging out with my girlies on our bicycles.

But soon, it got more and more. Life wasn’t easy (as for any teenager) and so when I was studying Agricultural Economics I was up to 1.5 packs of cigarettes a day. Yep, I did not drink but I did smoke A LOT!

That all changed on the first day of chemo. I figured I might as well quit the bad habit (read NASTY addiction to nicotine) while starting a much MUCH more harmful chemical “medicine” that would mess up my whole insides anyway. I thought of it as, “Well better stop with the smoking while they are pumping all this other stuff in my body. I can’t handle both!”

Of course that was just though talk! It isn’t as easy as it seems to quit a 13 year old habit/addiction that easily. Good thing was I had my chemo working for me!

Because of the side effects the Interferon had, smoking was ABSOLUTELY impossible! The first day after we started I could not even smoke half a cigarette without running (as in crawling, I didn’t have the energy) to the bathroom and throw up! Trust me; if you have to throw up every time you light up a smoke, you will STOP SMOKING, FAST!

But now you might be thinking what does all of this have to do with this week’s “Crazy Americans”? Well, actually a lot! Because as a former smoker I always look, see, find people who smoke. It is like a second nature. If I see somebody smoking, anywhere/anytime my sub consciousness automatically registers it!

And I must say living in America was not what I had expected it to be as far as being a smoker goes!

All over the world you used to see those amazing appealing commercials, big signs, in magazines of those though cowboys with a cigarette. Well in the “real America” that I have come to love, there is NO such thing as what those advertisements promise. You are not allowed to smoke in a club/pub/bar. You are not allowed to smoke in a restaurant and your are not allowed to smoke in any public building. And don’t get me wrong, I think this is good/fantastic for us human beings, but it is kinda disappointing as a smoker coming into this country!

Now to get to the root of my “Crazy Americans” post. Why is it that woman and normally I ONLY see WOMEN smoke while driving their cars???

YEP, it is the ladies that I see… everywhere!

Driving too town, driving too another state, driving around just to drive my car. I see ladies, girls (cause yes you can drive a car here at SIXTEEN!!!), older women, girlfriends and grandma’s behind the wheel, smoking like a chimney! What is up with that!? Maybe it is something that women do in the Midwest but I have no idea why? I don’t see them smoking on the street and of course I don’t see them smoking at home cause I don’t know them, but why???

Maybe it is much more fun driving and smoking in the own comfort of your car, or maybe they are not allowed to smoke at home, they sure are not allowed to smoke anywhere else so the car is the best option…? I don’t think so…. Smoking and driving isn’t the safest thing to do….

BUT as a former smoker and relatively new to America (Indiana) seeing women smoke whenever they drive their cars just makes me wonder. Is it something they grew up with or is it something new because society doesn’t allow them (the smoker) anywhere else anymore?

Do you see ladies smoke behind the wheel, or do you see as many guys as girls smoke while driving? Or haven’t your noticed this “smoking trend” at all and is it just me being "crazy"?

...
You can also enjoy:
Crazy Americans & public restrooms
and
Crazy Americans! Now where is it that you left your keys

I’m a monster!

No…! I’m a vampire… oh well, maybe a vampiry monster… who’s to know…

It was another round of tests in 2009. We just found out that the Interferon (chemo) did something with my eye sight and it needed testing.

 It was extremely frustrating for me to accept that when you (yes, you) get a little “auwie” (pain) somewhere, the doctor, husband, wife, kids, tell you to not be such a puss and get over it, where as I whenever I had a little “auwie”, little pain, rash, concern, or imaginative problem, I needed to be checked out completely, by different doctors multiple times!

So when I told the doctor that i thought my vision was getting a little blurry, guess what she told me to do…. Yep, get my buttocks into the best eye doctor’s office and have me checked out.

I had NEVER been to an eye doctor before. I didn’t need it. My vision was perfect and there was absolutely no reason to go there. So I was very surprised to see all the “tools”, huge chair and several interesting bottles on the desk. The eye doctor was a very sweet young man and asked me what the problem was. I told him about the cancer, chemo and blurry vision.

First we started with the eye test. Looking true a funny tool thingy and read the letters or numbers. I thought I did pretty good. Then he started to put my face in some kind of a cup holder and I needed to look true several little discs with holes in them and read some more numbers and letters. After the readings and me still thinking that I did pretty good, we started with the (incredibly nasty) light in the eyes.

While he was shinning that bright light in my eyes I needed to look up , down, right, left and again with the other eye… I figured this was gonna be it and he would tell me I would be fine and that I needed to be a little though and not be such a puss and then I would go home.

Well, the fun just started after that!

He put some drops of stuff out of those little bottles, in my eyes…. Red and yellow stuff and made me look true the little discs again. But this time it hurt! I did NOT sign up for this, yep the little puss came out!

The last drops were something “special”…

He put them in my eyes and told me to sit and wait until they had enlarged my pupils so he could look into the back of my eyes. “Okiedokie…”

About 15 minutes later I could NOT SEE ANYTHING up close anymore and only a little bit far off and the LIGHT! O MY GOSH, THAT LIGHT… I was pretty scared but apparently that‘s normal. He looked at the back of my eyes and found some “disturbing” things. Which was not funny but it was what we (as in the oncologist) found out later was expected to be a side effect of the chemo.

What was funny though was the fact that I was so HIGH AS A KITE of all the drugs they gave me and the fact that I had these HUGE pupils only made my mood even BETTER! We had to go to the hospital right after we got done at the eye doctor for chemo treatment and i really thought this was my day...

To every nurse, and yes I mean every nurse, doctor, patient, or whomever wanted to listen at the hospital I literally yelled; “I’M A MONSTER, I’M A MONSTER!!!”

And no, they didn’t get it… well, until they saw my eyes and understood my joke…

And then there were the ones that just thought I lost my mind, even after seeing my eyes…

And there was Bastiaan, pretty embarrassed to walk beside me, to make sure I didn’t run into any doors or walls…

Oh, it was a great day and I had one of the best chemo treatments ever! I’m pretty sure I fell asleep halfway true the treatment because of all the excitement and yelling but my gosh it was fun!

...

Friends and side effects

Cancer, chemo and side effects go hand in hand. My chemo was Interferon… A nasty drug which I had to take for 52 weeks…. 4 weeks of  5 days a week, IV’s in the arm and 48 weeks of shots, 3 shots a week... It didn't last 52 weeks, it lasted longer...

I was done with the first month of treatment, the IV’s and we had started with the first week of the shots, my dear friend Niels and housemate in our student home in The Netherlands and his girlfriend Moniek came to give me some moral support and see the country. And what is more fun & comforting than seeing the country by going to the hospital together with your “sick” friend???

Usually my mom, dad, Bastiaan’s mom and dad (they came over for 5 weeks from Holland),Bastiaan, Hanneke (my sister), Jan Willem (my brother) or other friends would come with me but now they all had a day off too. Niels and Moniek were more than happy to come with me and I would normally be awake the whole ride home (about one hour long) and then fall asleep in my own bed, before the real side effects would start, as in shaking, trembling, throwing up, running a fever, not be able to go to the bathroom or going all the time, and did I mention the shaking and trembling???

So, we got to the hospital, I get my shot (the second one that week, it was Wednesday) chat with all the nurses, have lot’s of fun and show Niels and Moniek the differences between hospitals in Holland and the USA. And introduced them to all the fantastic nurses and doctors in Fort Wayne.

We get the car I sit down and I’m just rambling feeling GREAT! I would get some anti nausea medicine, some flu resisting medicine, sleep medicine and some good pain killers together with the Interferon. And somehow this time the little cocktail was doing its work fantastically! I noticed that halfway home I’m slurring a bit… not too much…. Just a little bit, or so I thought. Niels and Moniek who never had been in the company of someone who is on chemo didn’t know what to expect so they figured it was normal.

But it wasn’t…

They put me to bed, which apparently wasn’t that easy. On really bad days Bastiaan would escort me out of the car, in the house and in bed. Niels and Moniek had the privilege this time. And all the time I was mumbling, speaking in slurred sentences and not making any sense in whatever I was trying to say.

They put me to bed and I slept…

In the evening the side effects started again, like clockwork, and that Thursday Niels and Moniek went home. My dad’s turn was that next day, on Friday, and we went to the hospital. Before they hooked me up to all the proper machinery and gave me my shot I told them about my strange drive home and that if was feeling so woozy and that I had problems making normal sentences.

And then all hell broke loose!

My fantastic oncologist, a colleague oncology doctor, and 5 nurses were standing by my chair, asking me questions, taking blood and arranging MRI’s and CAT scan’s…

They came to the conclusion the nausea medicine they had given me for the last month was only supposed to be given to me for one week (or given once every 3/4 weeks like you have with more often used chemo). Not five weeks in a row every single day…

Luckily there were no long lasting effects, but they gave me 2 weeks “off”, as a breather and recover from the buildup of medicine. After those two weeks we continued with the interferon but I can never have any nausea medicine again.
But that’s all right with me; I wasn’t planning on getting sick no more anyway…

And yes, now I know…
• Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
• Sudden confusion, trouble speaking or understanding
• Sudden trouble seeing in one or both eyes
• Sudden trouble walking, dizziness, loss of balance or coordination
• Sudden, severe headache with no known cause

... Means get YOUR BUTT back INTO the hospital, chemo or not!



…

Yoga is NOT relaxing

During all the chemo in 2008 and 2009 my oncologist suggested that I needed to do something to relax… I wasn’t feeling so good (wonder why???) and I needed to make sure that my head stayed on my shoulders the right way.

Now as you might know, “relax” isn’t in my dictionary. So she couldn’t ask for something more difficult, but I figured she knows best so, I should at least give it a try…

I knew that horse riding, which usually relaxes me, wasn’t the solution (see: How a girl gets a horse). I didn’t have the energy and stamina to stay or even get on my horse and I thought it wouldn’t look very good if I would be done with treatments but still had to go to the hospital to treat a broken arm or leg...

So I figured I might try something new.

After discussing several options with the docs, I went on the Internet and bought myself a yoga book.

Two days later I had the book and I was pretty content with myself for trying something new.

I got, like, 5 towels and spent and HOUR arranging them in the right position, and they still didn’t look like the picture in the book (which I can tell you, is NOT relaxing at all).

But I got down on the floor and while glaring at the book several times I tried to get myself into the right positions, I didn’t do much better with myself then I did with my towels….
I tried to follow the instructions and in the mean time also trying to relax and clear my mind about all the stuff that was going on. I spent an hour bending my body into the shapes in which it had never been before…

My theory, “you should do everything you do for one hundred percent or you shouldn’t do it at all.”

The next day I simply could not get out of bed. Everything was hurting, and not the hurt from the side effects! From my little toe all the way up to the top of my head, I was in pain. I defiantly didn’t feel relaxed and because I couldn’t focus true all this pain I missed my opportunity to go to the farm.

I had a pretty tight schedule: Monday afternoon: chemo, Tuesday: side effects, Wednesday morning: farm work, Wednesday afternoon: chemo, Thursday: side effects, Friday morning: farm work, Friday afternoon: chemo, Saturday: side effects, Sunday: farm work and sometimes something fun and Monday morning: farm work before we drove up to the hospital and start the whole cycle again… Not going to the farm made me even more worried because I couldn’t make paychecks for our boys. So end result of the yoga session; no relaxing, more worrying, more stress and even more pain!

And that is and was no good.

 

At about the same time me and my little brother talked about me having a drum set, I strongly believed that I would be just absolutely fantastic at drumming! I fantasized that it would be my undiscovered talent and while explaining to everybody why I was walking so funny for the next 4 days, “yes, I tried yoga, and NO, I’m not doing it again”, my brother secretly (with the help of my wonderful parents) bought a drum set from one of our neighbors for a really good price and one day of helping them out with our big pay loader.

On a Sunday not long after my fiasco with the yoga, they (as in my family) lured me to my brother’s house and surprised me with a beautiful red drum set. We took it home and set it up. And for the next weeks every time I felt defeated, angry, hurt or REALLY angry because of my sickness (see: What cancer does to somebody like me) I would sit behind my drum set and just SMASHED all my anger, hurt and frustration out of me.

I don’t have any more talent for playing the drums as I have for yoga, but I do feel sooooooo much better after I hit it and it doesn’t hurt as much as practicing yoga!

I found out not everybody deals with stress in the same way, I also figured out some people have different methods to relieve their stress. Apparently mine is hitting my drumsticks in a "tadum tadum tadum" way on my drum set for at least 10 minutes and I’ll be good for the rest of the day….