Lauren Beyenhof

Goodbye friend...

Your inspiration will be missed by all.

Last Song You'll Ever Sing

So there I was. Minding my own business driving my 40 miles home from work when I realized what I was listening to on my ipod. It was Paramore, a band that is okay, but not great. Suddenly I was struck with a few lyrics that I just had to share:

Everybody sing like it's the last song you will ever sing,

...

Everybody live like it's the last day you will ever see.

I know it's not anything new, but today it struck me more than it ever has. I guess it's because lately life has been "very interesting." I feel like I'm barely living day to day, sometimes it seems like week to week, and the days are just mushed into one. Not that it's boring, there are plenty of struggles, but I seem to just go on doing the same thing I have been doing. And I'm getting the same thing I always get. One more line from the same Paramore song:

We were born for this...

We really were born for this. For being here and living, for learning and loving each day as it comes. We will constantly have our challenges. Sometimes I think I will drown in mine. Sometimes they seem to overtake me. But life goes on. We need to figure out how to change what we are doing in such a way that we get things in life that are better for us. Moving forward is sometimes a huge challenge because we avoid change, even if it might be good for us.

It is time to step out. Time to reach to new places. Places higher, not lower or equal. Time to change for the better. Time to sing, like it's the last song you will ever sing. Try it in your car next time. I know I will in the morning (or later this morning.) It's time to live, live like it's the last day you will ever see. Tell people you love them. Let people know when you appreciate them, and be patient with those you aren't appreciative of. This is what we were born for. To live life and to enjoy life and to learn and grow.

My Best Friend

How do you say it?
If I say it, then it becomes true.

Aug 10th. I've seen that look before. Eyes strained. Quick breaths. I've seen that look in the mirror before. I know what it feels like. The feeling that no matter how much you breath it isn't enough. No matter how fast or how deep it doesn't seem like enough. Mostly you sit or lay so that you aren't using any energy. But the eyes, that is really where I recognized it. I have seen that look before in other friends. All of them had Cystic Fibrosis, and all passed away shortly after me seeing that look.

That look, the look of being tired of the struggle. Tired of the fight to breath. Yes some of us have to actually fight to breath. It can be a constant and exhausting battle. Some days it isn't too bad and other days you just want to crawl back into bed and sleep it off, that is when you know it's bad.

He was sleeping more than ever. Hesitating more at going up and down the stairs. Coming through the door and relaxing on the floor and never breathing deeply. Even it his sleep which had been fine for years he was agitated and sometimes rapidly breathing to stay alive.

It is extra hard when you recognize that there is nothing more you can do. Nothing to help, and worst of all, the best of drugs are only prolonging (and not that long) the suffering visible in the eyes.

It was time to make the call. He had been getting worse for months. He was on a high dose of lasix, among other meds. We had been prolonging with great success for some months. But the increase in the lasix was no longer helping. Age was a factor also. At over 80 years he had lived a long time. Although it didn't seem long enough to us.

There is a hole in our family now. A hole in our hearts and our lives. Not to mention the empty bed, and stuffed puppy toy that no longer is used as a pillow for living room floor naps.

Our puppy Jack passed away on the 11th of Aug. I couldn't watch the eyes anymore. I would want it to end, and I know he wanted it to end. He was so peaceful. JG and I were there for the entire time and he quickly slept and passed.

JG gave Jack to me as a gift before we married. He had been my constant office companion for 13 years. we had lunch together on Wednesdays when I worked from home, we napped in the living room together more times than I care to admit. He constantly kept me company during treatment times at night (like now.) After 2 months I still look behind me before I roll my chair to make sure he hasn't snuggled up to the wheels like he did sometimes. I get home from work and still walk to the back door thinking I have forgotten something...

People keep asking when we are going to get a new dog. I guess they don't understand. Jack was a part of the family. He wasn't just a dog. He was a best friend. There is no replacement for that.

Red and Spicy

Been 5 months since I posted. A lot of craziness has ensued of course. Life in general is like that isn't it. It seem so much a blur. I really wish I had stopped more often and enjoyed the last few months. Work has been crazy. The last 2 releases have been double releases and ahead of schedule. The yard work has been phenomenal, of course our yard looks great and that is always worth it. The roses are in perfect shape now, it only took 2 years to heal 10 years of neglect from previous owners. We finally got a vegetable garden planted this year, and I have radishes! I love radishes. I have been plucking them from the ground the last few weeks and eating them. The last batch I had 4 the size of golf balls. They were fantastic.
We have flowers galore in our yard and potatoes and tomatoes and squash, but me, I'm a radish guy. Radishes are fun, you never know how hot they might be when you bite into them. And they taste great with salt, which any CF'er knows we need a lot of. Some people they might tell you, "Slow down, smell the roses once in a while." But not me. I'm all about the radishes. Give me something a little spicy, a little unpredictable... that is real life.

Here it goes again...

So Christmas was especially great. We spent the time in Texas with JG's sister and her 2 kids. Doing things like this (Yes that is my face behind the arm):


And looking at things like this:

I swear it's not a rug... ;)

Sadly starting about New Years things haven't been so easy. Rather than bore you with the long drawn out whiny details I felt like the following song describes the last 3 weeks of my life (honestly when I started this part I swear it felt like it had been 6 weeks, ya know.) You can make your own assumptions. One thing I do still have is hope. As you have probably heard, during life there are mountains and valleys. We must pass through them all. I hope you enjoy the song. Read the lyrics first, then at the bottom go to Youtube for the fun video from Ok Go.

It could be ten, but then again, I can't remember half an hour since a quarter to four. Throw on your clothes, the second side of Surfer Rosa, and you leave me with my jaw on the floor.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

It starts out easy, something simple, something sleazy, something inching past the edge of the reserve. Now through lines of the cheap venetian blinds your car is pulling off of the curb.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

I guess there's got to be a break in the monotony, but Jesus, when it rains how it pours. Throw on your clothes, the second side of Surfer Rosa, and you leave me, yeah, you leave me.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

Ok Go - Here it Goes Again

Jack in the Box

So after 10 days and a few more to look forward to this is how I am feeling. Although to be honest the food isn't as good as the Jack in the Box and that is saying something.

The words that have been going through my head all day are from the song by No Doubt:

Trapped in a box, four walls as sky
Got a screen for a window about two feet wide
My mind rides and slides as my circuits are fried
No room for thought, use the box as my guide
Trapped in a box

A sad commentary about american television, but the lyrics also apply to those of us that get trapped in a box for weeks at a time, a few times a year.

You can check out the video here.

Yes that is the famous Gwen Stefani as the lead singer of No Doubt. Which she did way before her solo career. As a music lesson, this was No Doubt's first ever video and cost $5000. It was never played on air.

So I am a Jack trapped in a box. But the good news is that I should be able to get outta my box on Friday afternoon.

Hospital Cutbacks

Well it appears the economic hard times have hit the health care system. I swear every time I come here the pillows get smaller and smaller. The food portions too. The bed is long but skinnier. The red pillow is mine from home. No, its not a king size pillow, just your average target pillow. Next time I come its gonna be an airplane pillow and blanket on a footrest, I'm just sure of it.

So far feeling ok, but getting better. Just no sleep as usual.

Ice Cold Water and Salt

This is just on recipe for getting blood out of clothes. I just used cold water and it came out. Where did the blood come from you ask? So it was new port "Inauguration" day today. Wouldn't you like to have one of these coming right for your chest.


Just in case you didn't know when you access a port for the first few times, it is pretty painful, and man does it bleed! We finished the dirty business and I put a band-aid over the gigantic hole. Within a minute or two I could feel something wet on my chest. I peeled my shirt back and there was blood running down my chest and soaking through my clothes.

Luckily I had brought some tegaderm for the occasion just in case. Tegaderm is a nice plastic dressing that I have lived on for all my life. For me its like comfort food, only comfort dressing. We hospital freaks are strange but it was nice to have the trusty old Tegaderm covering the port.

It was definitely a relief to test out the new fancy port. It worked like a champ. I can't remember the last time I had a port that flushed that nicely. Lets hope it is not needed for a while, but if it is, I'm glad it's in and working.

Looks Like We Made it

Summer is finally over. I know that sounds terrible, but it will be nice to get to the snow shoveling and know what I am up against.
So I haven't posted since the last hospital stay when my port died, and honestly I have been worried about it since then. You just never know what complications your gonna have when you have surgery. Luckily its all done now in the Angio lab with local and drugs. It honestly wasn't so bad. It looks bad but the bruising will heal.
So since I have neglected I thought I would post some info about this summer. It has been busy with lots of family visiting and even a few trips. So first lets establish this. Here is Jack the dog, my dog, he looks close to how I feel right now.


The stuffed dog next to him is his faithful playmate, although at 12 years old (72+ in dog years) he doesn't get a whole lot of use, except as a pillow.
So the 4th of July came and went. We had some visitors for most of the month of July... enough that at one point I had a large tent up in backyard for some people since there was no room in the inn. JG always has great decorations as seen below, we also had the yard lights up. Small Christmas lights we string from the house to trees in back 4-5 times across the yard.
It can be very nice to sit out in the summer air and look at the lights while relaxing in the hammock.


That is one thing I didn't do enough of this summer is sit in the hammock. It kinda feels like I was running all summer, hence I feel like Jack the dog looks.
During the visits we did have time for some pool fun. It was just deep enough that I had to get in with the 18 month old nephew to keep him a float.


We visited some local gardens, which are beautiful, they had this great gazebo which I took a bunch of pictures of. They seemed to need a little contrast to me.


Along the way I felt like I didn't stop and enjoy the moments enough. Sometimes it was just shoving as much into the day as I could. Although we had many wonderful flowers this year that Costco assured us would not grow, yet they grew anyway.


The greatest lesson learned this summer. Skip and jump as much as possible, it will keep you young.

Happy Birthday to me...

Ok so I have purposefully been postponing this post. Sorry.
The hospital was pretty traumatic this last time and I am just barely able to think about it clearly.
So this is a port-a-cath. It's a permanent IV placed under the skin in the chest. My friend Lauren did a flash demo of the port and the port access. It pretty cool, but be aware it shows someone poking a needle into their chest. Port Slide show.

So for someone with CF the port can be pretty important. For me it is a sad necessity. Picc lines don't work on me, I've had too many. I only need it when I'm in the hospital, but so far that seems to be at least once a year. Peripheral IV's don't work too well with CF, the drug doses we take are so concentrated that it burns the veins... literally.
On to the juicy details...
So I access my port on Mother's Day. It is sluggish but seems to work ok. The next day I go into the hospital. The port is even worse. But seems to work ok. By day 3 its basically not working at all. It takes 3 minutes to flush the port. The pump has no problems with it, but flushing with 10cc syringe just doesn't work.
Now its time to get serious. I tell the nurse we should probably re-access since it seems like it might be poor needle placement. It takes her 3 tries and she can't get the needle placed. Time for drastic measures. Fluoro.
They take me down and decide they want to pull my line straight (its had a loop in my vein for about a year). So we prep and I tell them I want to be awake for it. Just local. So the procedure is essentially a heart-cath, without going to the heart. They inserted a tube in my groin vein. Then ran up to the end of the port line with a lasso and grabbed a hold.
Tug, tug, I'm feeling them pull on it. Its not feeling so well. I can feel the tug in my neck. For some reason the line doesn't want to come loose. Well They decide to try a contrast flush on the port. It takes the flouro nurse 3 tries to get a needle in right... My chest at this point was a bloody mess.
They flush with contrast, its slow but runs perfect. The contrasts flows right out of the end of the line. It seems faster, and so we decide to leave the needle and close up shop (meaning my groin cath.) The loop still there, the needle in place but the line performing poorly. Happy Birthday Eve Eve!!
So birthday eve morning, TPA day. They run TPA ( a anti-clotting agent) into me for 3 hours trying to get the line to open up. It doesn't open. On the plus side I did enjoy Shaun of the Dead during this 3 hour tour of TPA.
So on the birthday, I decide Im feeling better, its only been 10 days but I do feel better and I am ready to go home. So I get discharged.
Day 2 at home and my line is completely closed not working at all. I call the doctor and we decide instead of doing surgery this close to my hospitalization we should wait, and I can finish Cipro on oral drugs.
So this is my traumatic birthday hospital celebration.
Lessons learned:

• More dedication in my monthly port flushes. I am good but there have been times I went 5 weeks instead of 4.
• Nurses only get 2 shots at the port before they have to find someone new. I worry that I scarred a new nurse that was watching when they were trying to get it to work. Poor kid.
• Flouroscopy is cool to watch.
• Going into shock in the flouro room is not good and is not fun.
• I talk a lot when I'm nervous. I am sure that I was completely entertaining(or annoying) to the medical staff during the procedure. I don't think I ever stopped talking, even during the shock.
• Blood pressure can drop a lot during shock, and it doesn't help the shock at all to know and see it.
• It takes me a while to process this kind of stuff to be able to even write about it.

The good news, I had fantastic sushi the night of my birthday at this place right by our house that we love. And this was on my plate.
The sushi chef is a true artist. This is one piece of carrot cut and twisted to look like a butterfly. I am glad that there are beautiful things to live for each day, since some days I wonder why I am still trying. And especially after hospital experiences like that last one.