Re: Gammaknife, Tykerb...reality check
 

Good Morning!
In the spirit of "leaving a record" for others who walk this weird road in the future...

Steph...Oh my! Thanks for reminding me that the Decadron fatigue was on its way! Unbelievable...unless you've lived it!

So...
I'm now 3 days without steroids...completely weaned.
Fatigue...I haven't been so tired since chemo!
I also started back to work full time on the same day I stopped the steroids, so...that's a factor too.

I was so exhausted by the end of the first day, my core muscles literally ached...just from being "upright" all day. I came home...ordered dinner out...took a nap for 3 hours...then went to bed!!

I've also had a mild headache since stopping the steroids, but honestly, I don't think it has anything to do with my brain "issues"...it's hot here, so I think I may be a little dehydrated...and I'm tired...which can give you a headache too.

And...though my face is starting to deflate...I still feel like I look ridiculously "fat" when I look in the mirror. Sure hope that resolves before I meet my new students next week! Vanity, thy name is Denise!

Mostly...I am so excited to get my "real" life back...the one where I'm so busy being Denise, that I don't think about cancer trying to kill me!!

But, I have to admit...sometimes...my mind still wanders to that dark place...where the Tykerb isn't working...and mets are taking over my precious brain...killing me while I'm trying to get my life back. It's not a happy place... And, I never used to go there...ever. I'm blaming the steroids.

I'm hoping that when I'm not so tired all the time...I'll get my unfailingly positive outlook back.

In the mean time...thanks for checking in on me.
Echo tomorrow (fingers crossed...worried because I've been feeling kinds "winded" this week)
Check in with rad onc who did the gamma next week.

Happy Labor Day, Friends!
Denise

Re: Gammaknife, Tykerb...reality check
 

Lots of love to you and sincerely hoping you stay well away from the dark place that will mess with your beautiful psyche given half the chance

Jenny

Re: Gammaknife, Tykerb...reality check
 

I can't think of any better medicine for "getting back to me" than a room full of kids! During treatment I went to my grand daughter's kindergarten graduation. Her friends told her that I was nice, but they didn't like my "hair do"! I guess a scarf on a bald head wasn't their cup of tea! I laughed and laughed realizing that kids hold that mirror before our eyes and keep reality coming. My guess is that the kids will love watching the "puffiness" disappear. Those kids will see your heart above all else. Best wishes and many prayers, ma

Re: Gammaknife, Tykerb...reality check
 

Denise
I just logged back on after weeks of being gone. Been thinking about you alot and wondering how you are doing. Sorry you are going through all this. Totally glad you are pushing through and going back to work. Hugs to you!

Tracy

Re: Gammaknife, Tykerb...reality check
 

Hi Denise,

Your about to not have anytime to go to the dark place with how busy the school year is! I do hope it is a wonderful funfilled year for you and your kids at school and home. Gods blessings to you little Sis. Because of you I just might go back to work in January! You inspire me so!

Re: Gammaknife, Tykerb...reality check
 

Sorry that fatigue hit you broadside, but that is what happens to most of us in the situation with decadron.

Maybe you can give yourself some time over the long weekend to let your body come back to itself - although it is a bit of a process.

I always said the drug was way worse than the treatment for brain mets. I had terrible pains in my legs from weaning just a little too fast for me. Had to readjust a little and that helped.

Like a hangover that won't go away! But that WILL pass in due time.

Decadron is like being on uppers and downers when you are not.

Re: Gammaknife, Tykerb...reality check
 

In the spirit of "leaving a record" for others who walk this weird road in the future...

You did--and a beautifully described one!

Hope this helps nix/calm lots of future anxiety!

Re: Gammaknife, Tykerb...reality check
 

Denise, a room full of kids sounds like great 'medicine'! many people have asked me how I handle my diagnoses and treatments with two very little ones with me all the time... I always say, 'I don't know how people handle it without?' Kids have a magnificent way of keeping you and your brain too occupied to live in 'cancerland.' They fill your days with laughter and hugs too!

Re: Gammaknife, Tykerb...reality check
 

I was just thinking about you this morning, and came on site to read your funny posts. I love your positive attitude, and how you take even the icky things and make them seem not so bad. You are such an encouragement to others (including myself), that we can get through these crazy treatments with our sense of humor and positive outlook intact. Big hugs to you Denise...here's to today being even better than the last, and that it continues that way for a long, long time.

Re: Gammaknife, Tykerb...reality check
 

Hi Friends,
Just a quick update...
Went back to the classroom! Exciting! Fun! I didn't realize how much I missed it...till I met the kids and got started! But...

Oh my goodness! I'm exhausted...every day! I haven't been awake past 9:00 once this week!
And my feet and ankles are sooooo swollen and sore! That has to be related to all the meds...I never had any issue with that before.

And...twice now, I've had to make what Chris calls the "fun run". It was at two different times of day, and doesn't seem to be related to my diet in any way. But hey, two days out of 21...that's pretty good, I think.

I've started having a cracker or small cookie when I take my Tykerb, and it's helped with the nausea very nicely. I know my tummy is supposed to be empty...but Tykerb on a totally empty stomach means a day full of nausea for me. Literally, when I don't eat a little something with the med...I'm nauseous for the entire day. I'm going to check it out with the onc when I see her...but it's really a quality of life issue at this point. What's the use of killing off the tumors in my brain, if all I can do is lay around trying not to toss my cookies?!

I see the docs tomorrow...I'll keep you posted.
Thanks for all the prayers...please keep them coming...I'm not sure what's going on inside of me.
Denise

Oh! I forget to mention...my face, while not back to its normal size...I don't look like the circus fat lady any more! Small steps....silver linings!

Re: Gammaknife, Tykerb...reality check
 

Denise, Tykerb is fickle. When I took it in the spring I had no side effects. I've been on it over a week now with intense nausea, cramps and sudden intense diarrhea several times day and night. Are you taking Zofran? I've added lots of ginger to my diet and it seems to be helping. Fresh ginger snaps from the bakery are wonderful.

Re: Gammaknife, Tykerb...reality check
 

I was on Tykerb for almost 3 years, 18 mos w/Xeloda, 18 mos w/ Herceptin... It ended up not fickle for me. When I dropped Xeloda for Herceptin, things got even better.

Re: Gammaknife, Tykerb...reality check
 

Denise, I hope all goes well for you at the Dr's tomorrow. Gods blessings to you funny lady! By the By are you a Striesand fan?

Re: Gammaknife, Tykerb...reality check
 

I bet you're a fabulous teacher! I'm glad you are back with the kids in your classroom again. :)

Hope the echo results are great and the dr's visit goes well. Are you any less winded?

Denise, if you are comfortable sharing, how did you discover the brain mets? Was it a routine brain scan post treatment or were you having symptoms? You may have shared it and I missed it--if so, sorry about asking for a repeat.

I don't know if you are propping up your feet but that can really help with edema in the lower extremities. You might put a foot stool under your desk at school for the times you are sitting and elevate your legs at home too. Watching your sodium intake can also be of help.

Rooting for ya!

Paula

Re: Gammaknife, Tykerb...reality check
 

HI Denise,
I am so glad you are back in the classroom. My only advise is to keep Immodium with you at all times and take two at the first sign of trouble. Hope you feel better soon.
Sandra

Re: Gammaknife, Tykerb...reality check
 

So glad to hear from you and that you're doing well! Thank You, Lord!

:-) Penny

Re: Gammaknife, Tykerb...reality check
 

How many pills are you taking? Been on Tykerb for about 5 years. Used to take a full dose. Now I've settled on 3 per day and it seems to work just fine. I didn't think that nausea was a side effect of tykerb. I wonder if an acid blocker would help calm your insides down. I know for me, prednisone makes me feel nauseated. I wonder if all the cortisone set up the sour stomach? Please check with the doc on food plus tykerb. I think it really affects how it is absorbed. Am all for QOL being first and foremost! Hang in there!

Re: Gammaknife, Tykerb...reality check
 

You guys are so sweet! I appreciate all your advice and concern more than you probably realize!

Vicki and Flori - Checked with onc...she definitely doesn't want my stomach to have ANY food in there! Sooooo...she prescribed Zofran.

Nancy - who ISN'T a Steisand fan, at some level? What a gift that voice is!

Paula - sit during the school day? Hahahaha! Elementary teachers almost never sit. But, believe me, once I'm home...my recliner is my best friend!
My echo (last Friday) was excellent...so any "windedness" must be from the weight I've gained!
And, my friend, you can read all about this ridiculous brain met journey on the thread "Brain Mets *&%$*" back in July. I'd post it here, but I can't get the link to work!

Sandra - I stash Immodium like squirrels stash nuts! :)

Brenda - I'm reeeeaaaaaly hoping that once I get all the timing correct...my experience with Herceptin and Tykerb will be like yours.

Penny - Thank you, Jesus indeed!! :)

Saw the Gamma Rad Onc yesterday. He's optimistic that they were able to zap and kill all the active disease, AND, he doesn't think the BC had a chance to spread to the lining of my brain (lepto meningeal disease) so...that was a relief, for now anyway.

Off to school! I haven't been this excited to go to work in years!! God is Good!

Hugs all around!
Please keep praying that the rad onc is right, and that no new lesions pop up between now and the November MRI.

Denise

Re: Gammaknife, Tykerb...reality check
 

Re: Gammaknife, Tykerb...reality check
 

Denise,

I haven't checked the board in a long while, but you are always on my mind. After reading these most recent posts, I have to say, you, Girl, are one DAMNAMAZING woman!!! I promise to never whine about my weany side effects again.

You are truly inspiring!! Keep rocking!!
Prayers, thoughts, healing energy and hugs galore
xoxoxoxoxoxoxoxoxoxoxoxoxoxox