Well, I won't get into the details because its pretty personal but since Christmas I have been very ill in many ways. Two days ago Scott and I spoke to my Neurosurgeon who said she believes I'm having an allergic reaction to the Decadron Steroid I'm on and that I need to taper off of it incredibly quickly down to 1 mg. a day.
I started on 16 mg daily, then after 2 weeks I was on 12 mg. day and then after 3 weeks I was on 9 mg day. I've been on 9 mg daily for 2 weeks. Well, I am being tapered from 9 to 6, 5, 4, 3, 2 and 1 by next week. This is because I'm having such intense side effects the Dr. feels that I'm having an allergic reaction.
This taper will be really hard on my body and I have to stay on 1 mg. for a long while until my body starts making cortisol on its own again...but the Dr. seems encouraged that although my side effects will worsen before they get better that within a one week I'll be in a much better place with a lot of these symptoms.
Just for the record---living on Decadron--for my body and the intense problems I've had--is worse that being on chemo or anything else I have ever had to endure. I would rather go through chemo again than live through my life the past 2 weeks again.
Thanks for all the prayers--I especially need them now.
Love, Heidi
Thursday, January 1, 2009
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 photo...you 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..=)
Anyhow--I had to add a layout about my recent Brain Surgery. Doubleclick on this photo...you 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..=)
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!!! =)
Hugs,
Heidi
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!!! =)
Hugs,
Heidi
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 control...so I'm wondering...is 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 know...am I going to blow up by 50 pounds? It's just out of control...my 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
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 control...so I'm wondering...is 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 know...am I going to blow up by 50 pounds? It's just out of control...my 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 Legos...life doesn't get any better than this...
Christmas Morning
The children ready to come downstairs to see what Santa left them....
Santa left the family the Wii!! How exciting..it looks like everyone got something in their stocking that goes with the Wii!
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 day...to 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 either...no fun... =)
Love, Heidi
**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 day...to 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 either...no fun... =)
Love, Heidi
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