Monday, December 29, 2008

Brain Surgery Page

Ok, so I just have to post this on here...I've been working on scrapbooks for each of my four children. They are entitled "Mom's Breast Cancer Journey" and I hope these books will be a source of strength to my children someday.

Anyhow--I had to add a layout about my recent Brain Surgery. Doubleclick on this have to see the little Frankensteins with the screws in his head on the page...isn't that so funny? I used sun ray/dot paper to signify the radiation beams going into my head and the dots for the tumor...anyhow..I just loved the Frankenstein--feeling a little screwy--accents on this page!!

Some humor for your day..=)

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Oh..and hair loss!

Oh and something comical..I lost my hair patch this weekend!! My neurosurgeon told me that due to the intense Gamma Knife Radiation going into my head I would permanently lose the hair in the area that I had my Surgery. This radiation kills the roots of your hair. So I had a 2 1/2 cm lesion so there is an area on the left side of my head where I was supposed to lose that chunk of hair permanently and then I'd just comb over =) that area as my hair would not grow back there.

Anyhow..nothing had happened yet and this weekend WOW...i lost a lot of hair (I'm thinking more than the size of my lesion???) But it was just comical because it's been 3 weeks since my surgery and all of a sudden my body reacted and realized that the roots were dead and it was time for all that hair to come out. I'm just glad it is ONLY that one area and not all my hair!!! =)


On steroids...I'm going insane!

Ok, so the past few days I've had some horrible side effects of the steroids. It seems like as certain symptoms get better others get worse. I did a bunch of research this weekend on Decadron *the steroids I'm on* and I learned a lot more about what I'm going through and even though I feel very alone---do you know anyone with a brain tumor?? I sure don't--I'm feeling a little less INSANE since other people on Decadron DO have these same problems!

My new problems:
**Water retention in my knees...I have granny knees...there is a bunch of fluid pooling all around my knee caps. It's horrible! The water doesn't have anywhere to go I guess?? And so its congregating around my knees and it makes it painful to stand/walk/etc. and it hurts all the time..even when I wake up in the morning! It never goes away! AHH!! I'm having muscle loss in my legs/joints which makes the problem more painful. The drugs do that. It gets worse as the day goes on, the mornings are best. But this is crazy...will it continue? Will I get water retention in other joints? Time will tell I guess....did I mention I have to be on this drug for MONTHS more??? I think I'm going insane...

**Weight gain...ok, everyone can say I'm a skinny ninny and could use a few more pounds. But this is ridiculous. I have what they call a moon face and now I have what is called a moon belly. I had gained about 10 pounds thus far as of last last month, no biggie....well, last week I gained 6! 6 in one week...its out of I'm this going to continue? The rapid weight gain...I can't keep up with this..a pound a day is a little much. However, my appetite is much more than it was a week ago, I ate WAY more this past week, so the weight gain makes sense...but why is my appetite more so than a week ago?? Hmm....I just want to I going to blow up by 50 pounds? It's just out of new goal this week....ride my excercise bike daily...hopeuflly will help with my legs and my weight!!

So the good news is I'm sleeping better and I've gone 6 days without AMBIEN..yeah..I finally feel tired again which is a wonderful blessing. I still don't sleep enough (insomnia, totally WIRED all the time) but I'm sleeping without drugs which for me is a HUGE deal. I do not like drugs being in charge of me..i like Heidi to be in charge. And right now..Heidi is not in charge. =(

Ok, so I just had to post about my steroids again....really this is just such a different trial than what I went through last fall. Chemo and all that was so hard in so many ways but it tried me in such a different way..its so, so very different what I'm going through now. How I pray I will come to learn what I need to learn through this challenge as each day I struggle to make it through the trial of the day. How grateful I am for the small miracles and blessings every day and for the things that are a little better each day even as other things get worse.

I'm so grateful for Kaylie who helps me with SO Many things (can you pick up your brother, can you get this out of the fridge as I can't bend over, can you pick that up, can you run upstairs and get that, I can't do the stairs, can you help me with this??? etc. etc.) And likewise my husband who when he is home does everything to help me and the children. How blessed I am with a supportive and loving family who are being such good sports about having a mom with leg problems...among many.

I hope you all have a great 2009 and don't take your health for granted!! I can't WAIT until I have LEGS that don't hurt...i can't imagine what that will be like..its been over a month since I've been without pain!

Love, Heidi

Saturday, December 27, 2008

Christmas Favorites...

Kaylie got a Camera..she couldn't be more thrilled.....
Ahh!! Star Wars doesn't get any better than this...
Dallyn had just really wanted this Naboo Fighter Squat Guy set....isn't he a cutie..just had to take my picture with him!
Kyler was more into eating the M & M's from his stocking than actually opening presents....that's my 2 year old Chocolate Lover!!
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Christmas Morning

The children ready to come downstairs to see what Santa left them....
Santa left the family the Wii!! How looks like everyone got something in their stocking that goes with the Wii!
The boys checking out their special gifts from Santa and their stockings....
Kaylie is excited to find a littlest pet shop friend and a Wii controller in her stocking...
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Life on Steroids

Well I haven't written much about life on steroids..its really been hard for me! Here are some of the symptoms:

**I only sleep a few hours every night and falling asleep and staying asleep is really hard to do!
**My mind is always wired, I have to be doing something 24/7 and my mind won't stop racing..I'm an insane person
**I am hungry all the time and have to eat all the time, I really do or I physically become ill, I get a headache, etc.
**I'm irritable and very moody--just ask my family--sometimes Mom needs a 'time out' lately =)
**I'm gaining weight and am an acne poster child...yes, both side effects of the Decadron Steroid
**The worst side effect is the pain in my legs, my legs hurt so badly and it gets worse and worse throughout the the point where I can't hardly stand up or walk by the afternoon.

Last week I fell a few times because my legs gave out on me. I was in so much pain and wasn't sleeping and was going insane in my brain---my OCD was kicking in really bad with the brain racing thing--and so on Thurs I called my Dr. and BEGGED them to take my dosage down. I had asked before and they had said Jan 8th was the date I could start going down on my dosage. As we remember I do have a brain tumor here we are trying to treat. However, I just cried to my Dr. that I couldn't go on living with this leg pain and the racing brain thing (really I needed to be put in a funny farm)

I'm happy to report that the Dr. allowed me to taper off from 12 mg. a day to 9 mg. a day starting last Saturday night. I'm here to report--one week later---that my life is 50% better today than it was last Sat. because of that 3 mg. a day difference! Guess what? I've felt tired the past few days---for the first time since late November..I'm TIRED! Yeah!! And my legs--although still struggling--are not so painful that I cry all the time.

I'm so grateful for this blessing and I'm looking forward to January 8th...maybe they'll say I can taper down to 6 mg at day??? Who knows...there's a glance at life on steroids...i don't recommend it...but then again I don't recommend brain tumors fun... =)

Love, Heidi

Monday, December 22, 2008

Merry Christmas!

We had to take a photo of our family in our matching Christmas outfits after church on Sunday. Merry Christmas from the Wrights!
Kaylie and I were we had to take a photo...and yes I looked like I've gained about 25 pounds because my face is so puffy from the steroids I'm on. I've put on about 10 pounds between water and all the food I'm eating. It's quite strange. I won't be posting many photos of myself in the coming months...I just don't look like myself at all. It's very strange...but I have no control over any of it. That's the most frustrating part! I'm puffy and gaining weight and eating like a pig, and not sleeping and there isn't anything I can do! So, I just take a day at a time and I try to avoid looking in the mirror....=)
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Kaylie's Vocal Concert

Kaylie has been taking voice lessons for the past several months. Last week was her first vocal concert. She sang "Let it Snow!" and "There is a Place". She did a wonderful job! Here she is singing!
Here she is with her voice teacher, Stacy Rogers.
Here she is with her good friend Isabelle who also takes voice lessons from Stacy. Way to go Kaylie! You have a beautiful voice!
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Wednesday, December 17, 2008

A Temple Visit

Kaylie and I had an early morning shopping trip on Saturday and we drove up to the temple grounds on our way. Kaylie said it had been awhile since she had visited up there so we wanted to go up for a few minutes.

Here is Kaylie with the Nativity Scene...
Kaylie wanted to take some photos of Mom too...
The Sacramento Temple is just so peaceful and beautiful....
There is my darling daughter....I'm so grateful for her, what a sweet spirited child she is. We had a nice visit to the temple grounds and a great time shopping at the outlet mall afterwards.
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Holiday Festivities

Well Brain Surgery is old news! The holidays are here and our family has been having some fun!
Here the kids are getting ready to decorate the tree!

Yeah! It's all done....look how pretty! Now we just have to wait for the tree skirt to come--Mom finally ordered one after 11 years!!
Our ward Christmas party was last weekend and it was great food and company for all. I just loved this photo of Kyler and "His Friends" as he tells me!
Sunday evening we went caroling to friends, took cookies around and enjoyed driving around looking at amazing displays of Christmas lights. Here we are in mid "Wish you a Merry Christmas!" was COLD and rainy that night!! Happy Holidays to all!!
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Saturday, December 6, 2008

Brain Surgery

Well I had Brain Surgery yesterday, as amazing as that is to think about! Everything went really well, I just have a very sore head!

This first photo is right after I got my head frame on. They put 4 shots in my head to numb the spots where the pins would hold the frame in. WOW..that hurt! Really, really hurt. When the Neurosurgeon tightened the frame with a screwdriver I just kept saying "ouch, ouch ouch" because the pressure on my head was so bad...even with local anesthetic! This plastic dome had holes in it and they did a lot of measuring by putting rods in the holes in the helmet.
Here you can see me with just the head frame. I wore this four about 5 hours yesterday. And it is only being held up by the 2 pins in my forehead and 2 pins in the back of my head....ouch.....and yes the pins are digging into my skin so if you are squeamish don't look too closely. Believe me..i could feel the pins digging into my head. But the goal was that the frame can't move..and once it was didn't move!
This is the Gamma Knife machine and the headpiece that my brain went into during surgery. There are 201 holes in there and they had radiation beams coming into my head from those holes. See the metal slaps behind the headpiece?? That is where entire body went into the machine! Yep, it doesn't look very big but the table moved me into the machine for the treatment..pretty amazing stuff. Even though I'm claustrophobic I opened my eyes as I went into the machine. I figured, "How often will I get to have brain surgery? I need to just look and see what its like in here!" I was so proud of myself!! For my morning MRI I didn't take Valium this time--last time I did--so I'm feeling very good about conquering fears!

Here I am right before I went into the machine. You can see the physicist setting the final calculations for my treatment. After he was done I went into the machine once, came out to get different head brackets attached to my initial frame, and went back into the machine for more radiation. They treated the tumor in sections this way. After about 30 minutes of Gamma Knife Surgery in the actual surgery was done!
Too bad it took 5 hours from start to finish........getting my IV/meds, fitting for the Head Frame, having the MRI scans done, waiting for analyzing of the MRI's, waiting for the team to draw up the plans for my treatment and then finally having the surgery done! I was so grateful to get that head brace off!! Wow!! I'm doing well though---still have a sore head, I'm sure that'll take a few days to ease up. All in all I'm doing really well though! Thanks to everyone for all your love and prayers!

Hugs, Heidi
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Thursday, December 4, 2008

My Blessings...

Need I say more???

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Wednesday, December 3, 2008

Surgery is a Go for Friday!

Well we met with the Dr. Zusman yesterday and she is the Neurosurgeon for my Gamma Knife team. The board of doctors, scientists, etc. met and the vote was unanimous that the Gamma Knife surgery is the best option for me! Yeah!

So Friday morning I'll go in for this surgery. I'll be fitted for a helmet on my head, I'll go through an intense MRI screening. I'll wait while the scientists and doctors plan the attack for my tumor. Then I'll go through about an hour of intense radiation to the area. Within an hour of being done they send me home! It's an easy outpatient procedure!

I'll be a bit tired, nauseated for a day and then back to life as I know it! That's the miracle of this surgery. I'll have a follow-up MRI in 4 weeks to check the tumor. The goal is that the tumor will have not grown...if that's the case, the surgery will have worked well. Then at month two the goal will be to see shrinkage or signs of the tumor dying off. The entire tumor elimination process will take 6-8 months so we'll monitor things as they go along.

Thanks for all the support, prayers and encouragement! We feel very grateful that I get to have Gamma Knife Surgery! Yeah!

Monday, December 1, 2008

Good News on PET Scan

Well today I had a PET scan, which scans my entire body for 'hot spots' or spots of metastatic disease. My doctor called me back this evening with good news from the PET. Other than my tumor and a spot on my throat which they want checked out with an ENT, there weren't any hot spots to be found! Yeah! So I just need to have the throat followed up with, but the guess is that everything is alright there, they just want to doublecheck it!

Then in other news, the initial signs of the tumor in my head--which DID show up on the PET of course---is that the report showed slight signs of other words there may be some damage happening to the tumor already as a result of these steroids I'm on! I'll meet tomorrow with more doctors....but this initial news was encouraging! Yeah for the clean PET scan.....

Just wanted to share the good news... =)