Congenital Chest Wall Deformity??

Well I got a surprise when I went into see my radiation oncologist last week. She explained to me why my radiation takes 2 sessions instead of 1! I'm a 30 minute job instead of a 15 minute job. She asks me, "Are you aware that you have a congenital chest wall deformity?" I just stared at her...a WHAT?? She then said, "We call it Pectus Excavatus".....my mouth dropped again. What in the world was she talking about???

Well in a nutshell this all means that I have a sunken chest (this I knew...it was something I was born with and something I had accepted about the way my body was built...more of a cosmetic thing I didn't like, but what can you do?) Ok, so this sunken chest issue gets complicated once you have cancer and need treatment I found out!!! As it turns out my heart is basically right on my chest wall. There is no lung next to my chest wall, in between my heart and chest wall, like all of you have!!! Instead my heart is just RIGHT THERE!! My sternum is sunken in and I have a decreased lung capacity because my lung is off to the side instead of being right where it should be. OH MY GOODNESS SAKES!!!!!!!!!!!

Ok, so after I got over the shock of pectus excavatus Dr. Lee told me that because of this deformity (and yes she kept using that word, 'deformity'--ahh!) then they have to use different types of radiation fields. They can't simply radiate with strong, penetrating radiation the whole time. They are having my hold my breath to decrease the effect on my heart. But they have to use different machines and blockers because my heart is in a different position that they weren't expecting.

She then went on to tell me that she can't 'guarantee' anything about my heart. She wanted me to know that the risk to my heart is there and with me it's even higher than the average radiation patient. She said they are doing everything medically possible at this point to reduce the risk to my heart, but she said pectus excavatus is a rare condition to be working on with radiation and unfortunately it's making things harder for everyone.

So I am keeping my chin up and thinking positive thoughts for my heart! It's amazing the things that you learn when you are 30 years old and think you know a lot about your health..and then to find out you have some crazy 'deformity'. Oh my goodness.

Well there is your trivia for the day.....9 days of radiation down.....about 21 or so to go. Yeah!! =)

Smiles,
Heidi

P.S. These are the cheerful cookies my parents gave me back in October when I was diagnosed. I needed something cheerful to look at today! =)

The little things...

I'm trying to focus on being more grateful for the little things. I wanted to share one of those little things that I'm grateful for today. I'm so grateful that Kaylie and Cameron still enjoy playing together. Last weekend they set up this schoolroom and I saw Cameron playing teacher. He was copying what his teacher does in class! How cute is that? I'm so glad they enjoy school enough to want to play it when they get home. Above all I'm grateful that they are friends....

Dallyn's Help....

So Dallyn had some help making his scrapbook....Cameron did the illustrations (embellishments) on two of the pages....I don't think the Hoth Battle was Dallyn's idea!!

This is what my desk looked like after Dallyn had chosen his photos...hmm..not so organized..but at least he had fun! =)

And the one page I worked on while he was doing his album...how did a lightsaber get on my desk? I tell you my scrapbooking room is really not my own!! I love the "Are we there yet?" look on Kaylie's face though. Goes great with the stamps!! =)

Dallyns First Scrapbook

This is so sweet! Dallyn decided he wanted to scrapbook the other day. So he picked out from some extra photos I had and Cameron helped him put together a scrapbook. Isn't it darling? Dallyn is only 3..i just love it!

The Drama of the Big Boy Bed??

Ok, so near the end of March Kyler learned how to climb out of his crib, much to the chagrin of his parents!! And so, we decided to borrow a toddler bed so he would stop climbing/falling out of his crib. Well, the toddler bed proved to be more dangerous than the crib because it didn't have any side rails! So during the night Kyler would end up falling off and rolling underneath the kids table. Or he would roll off and then come into our room at odd hours of the night!!

After a few days of this we decided to forget the bed and just put his mattress on the floor. He STILL rolled off!! He would end up in the strangest positions and he wasn't sleeping very soundly.

So, after about 2 weeks of trial and error we finally gave up and decided to put him back in his crib and guess what?? He has only crawled out a few times!!!!! Amazing...he must realize the novelty is gone and that it beats falling off onto the floor all the time!

But stay tuned because Scott is building Kyler a 'big boy bed' with side rails....we know the crib days won't last forever and next time we'll be prepared!!

Open House

It's hard to believe its time for Open House at school! Didn't my kids just START 1st and 3rd grade?? Wow..how time flies.

Cameron shows off his skeleton mask...

Kaylie is proud of her American Avocet bird she made as part of her report for the Marsh Project in her class. Great job Kaylie!

Take a Deep Breath and Hold It.....

"Take a deep breath and hold it..." Ok, so those are the words I hear about 15 times in a 30 minute period while I'm laying on the radiation table. Yes, I've started my 30 days of radiation treatment..today is day 5 and I'm happy to say I have almost one week of 6 behind me!

I go downtown to Mercy General Hospital every weekday for a 30 minute apt. Take the hour round-trip drive and the time it takes to park and get to my apt and I'm gone about 2 hours. Because my cancer was on my left side its caused some complications with radiation. In an effort to minimize the damage to my heart the radiation oncologist is trying to block my heart out as best she can. One of these methods is having me hold my breath each and every time they radiate. This way my heart moves down into my chest cavity just slightly and out of the direct ray of the radiation.

So far the only side effect I've had is that I've felt really tired the past 2 days. They said after about a week to a week and a half of treatment I'd start to have side effects. Redness, sunburn, tenderness in the radiation area, chest pains, pigmentation changes, fatigue and body aches. I've had chest pains twice now and I'm wondering if its related to this? Probably.

Anyhow..tune in later to find out how I'm surviving this daily regimen.
Smiles,
Heidi

Fav New Snack

These are my FAVORITE new healthy snack! I could eat them all day long! They are Riceworks chips made with brown rice! They don't have any artificial flavorings or preservatives! And they have virtually no sugar! Which is great when I'm trying to avoid refined white sugars!! I just had to share my fun new snack. I got them at Costco!! Yummy!!!

Fabric Sneak Peek!

This is the fabric I bought to use for my curtains and pillows in the living room! I'm excited!

5 Surprises--Home from Utah!

So I had the opportunity to go to Utah to help my sister who just had surgery. It was such a blessing to be there and to spend time with her and get to take care of my sweet little niece who is just 2 months old. Although I didn't sleep well I sure was grateful to be able to visit them!

I had a 2 1/2 week break in between chemo and radiation and so I took advantage of 5 days of that time to be able to go out to help my sister. Scott took on lots of the load while I was gone, and my aunt and friend helped watch my children too--thanks! When I returned the family had left me a cute poem about all the things they did and how they missed me! I was to look for 5 surprises left around the house for me, one for each person who missed me!! HOW CUTE??

The surprises were:

1. The backyard was mowed, trimmed and fitted with a new net and batting area rigged up by Scott for our little boys to practice baseball! Wow! Our yard looks ready for spring now!

2. Scott put together the new bookcases for our living room! Now we finally have bookcases to fit all of our books!! We can call this room the library now can't we?? I'm so excited, they are beautiful.

3. The pan cupboard that has been an eyesore these past 2 1/2 years now has 2 pull-out drawers built inside for my new Calphalon pans! yeahoo!! No more stacking pans in a missmash of a cupboard! And there is still room for my Kitchen Aid and stockpot in there next to the drawers! The amazing custom built drawers by my Scotty!

4. Scott found me a Rebounder personal trampoline, complete with exercise DVD's off of craigslist!! Yeah! Now I'm doing my 5 minutes twice a day to help with my lymphatic system and to get rid of toxins from chemo. (My Dr. recommended I do this each day) The Rebounder is a special trampoline that is very tightly wound and WOW does it hurt!

5. And lastly Scott built my cornice box for over the living room window!! Now all that's left is to fit the fabric onto it and that room will be done! Yeahoo!!

Thanks to Scott for all the 'surprises' and to the kids for helping Scott clean up the house so I had a nice haven to come home to!

Hugs,
Heidi

Radiation Lifestyle

Well, the next phase of my treatment is radiation. I'll be going in each weekday, Monday through Friday, for the next 6 weeks! Can you believe that? I guess the daily treatment of the radiation is what kills any microscopic cancer cells.

I'll be receiving radiation to my neck, upper arm, clavicle area and chest wall. Last week my nurse called to say that Dr. Lee decided that she needs TWO time slots in which to treat me. Hmm?? That makes me a bit worried because normally one time slot is enough time to radiate a person. I'll be meeting with Dr. Lee Wednesday for a second Simulation (also not expected) to be sure that everything looks good between my X-rays and CT scan. At that time I'll ask her WHY? exactly I need two time slots. Assuming all looks good on Wed. then I'll start radiation officially on Thursday April 10th.

Thanks for checking in!
Smiles,
Heidi

More Birthday Fun...

A Serious Jedi Pose....

Doesn't He Look Happy?? Legos were the theme of the party for sure!

A clone trooper turns 7

I can't believe our little Clone Trooper has turned 7!! Wow!! He's having a Star Wars Party today. Cameron, may the force be you on your special day!