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Gammaknife, Tykerb...reality check
Good morning friends!
Some of my sisters here have asked privately for an update...so...I'm posting about how I'm feeling since starting my 'brain met treatment'. And...making a shameless plea for love, support and prayers...but on my terms. ~Since I'm the one who is more hopped up on steroids than Barry Bonds in his heyday, and as a result...a little "on edge"... ~And since I'm the only one who is living this exact journey... ~And since I'm not feeling so hot... A few ground rules for this thread ... unheard of... I know... but necessary for my happiness, healing and emotional health. 1. If you don't want to read "scary" things...stop now. 2. I'm NOT being "imaginative", "exaggerating", or "whining". I'm sharing what I hope will be helpful information, if God forbid anyone ever needs it. If as you're reading my post, you find that any of the words in quotes above is popping into your head...stop reading...and go to another thread. 3. If you are even tempted for one second to post an article, link, or comment about the shunts that can be placed in my skull to relieve pressure...stop now....Start a new thread for that. PLEASE! None of that here. I know what I need about that...and where to find more if I need it. Thinking about that option makes me sad and you know I don't like sad. So...if you're still reading...I'll assume you're one of my peeps. The ones who love me...want me to feel well...who prays and sends healing thoughts. Thank you! You guys are the best medicine out there! So... after all those caveats...here's the update...somewhat anticlimactic at this point...sorry: My brain swelling (edema) has gotten progressively worse in the 10 days since the Gammaknife procedure. I'm back to the maximum dose of steroids (4mg evey 6 hours) which keeps the pain and nausea at bay...but the feeling that my head is overstuffed is unrelenting. (Like someone jammed too much playdough back into the container and smashed on the lid.) My eyes even look a little "bulgy" sometimes. The surgeon says as long as I'm not seizing, or vomiting...losing my balance...the edema is okay...it's how we heal, I guess. Mostly, I just want to lay with my eyes closed...but I'm trying to do less of that...just to keep my spirits up. I'm feeling noise and light sensitive too. And even with all the steroids...I'm tired...physically, and mentally. I take a 3 hour nap, every 8 hours or so, around the clock. No "good night's sleep" in my day right now. The sleep schedule does help with getting the Tykerb in me at a time that's convenient though! Silver lining! On the Tykerb front...no diarrhea yet...YAY! (Acidophilous gets my vote for that benefit) A little bit of abdominal cramping. Some mild nausea. No face rash yet either! (If I have to be fat, wrinkled, AND have acne...I'm not sure there's enough Zoloft in the world to keep me smiling!) My knee joints are a weak spot for me...and they are achy...but I also had my first infusion of Reclast last week...so I wonder if that's from Reclast...and not from Tykerb. Some tingling in my fingers...but not sure whether it's from lymphedema, brain edema, or Tykerb. Personally, I'm leaning Tykerb...it seems to coincide with when Tykerb is at it's best in my system. Now all of that may sound like a lot. But truly, I still feel better than I did during A/C or Taxol. MUCH better. ~I'm still planning to go set up my classroom on Thursday. (My two handsome sons are going along to do all the "heavy lifting" for me) ~I'm still working on new learning centers, lesson plans, and fun stuff for September. ~Helping serve dinner at marching band camp tomorrow night. ~Been updating my work wardrobe by shopping online! Fun Fun Fun! (the larger, more-of-me-to-love sized me, does NOT fit into the pre-cancer sized clothing!) ~I'm hosting a dinner party next weekend...doing all my own cooking! Can't wait! ~In just a few short weeks, I'm hoping to feel more like the happy, healthy, pre-cancer Denise than I have in more than a year!!! So, I guess, in short... please pray for healing, patience with myself and the process...and some relief from side effects. Thanks for letting me share. Love, Denise |
Re: Gammaknife, Tykerb...reality check
Go wonder woman! Your still going to work! you rock! Also throwing dinner parties! Amazing! Two wonderful sons helping you at work Priceless! You are in my prayers.
Love your friend, Nancy |
Re: Gammaknife, Tykerb...reality check
you ROCK! Keeping you in my prayers!!
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Re: Gammaknife, Tykerb...reality check
You have those prayers, Denise. (And glad to read and pray, on your terms!)
Barb A. |
Re: Gammaknife, Tykerb...reality check
I so appreciate every time someone shares their journey! I learn so much and have an idea of what may or may not happen- thank you Denise for bravely going forward and taking us along on your journey. Prayers for relief from symptoms!
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Re: Gammaknife, Tykerb...reality check
The kids at school need you to be there. Nina went through the nausea and full head stuff. The Tykerb she took also had Xeloda, so there was a balance of what each did. I am glad that for the most part things are under control. Funny you mention the weight gain as Nina also did that, gaining almost 25 pounds on a 5 foot 3 inch frame. Once the steroids were no longer necessary, she lost the weight to get back to 136. Wear soft gloves and count to ten before yelling or you will need to sit in the corner. You will not be a nice person while on the steroids, but you have an excuse.
They caught the brain mets early. That is a good sign of getting them treated with the brain rad shots. If you are mean and stuff the first week, that will help make the children relate to you. As you get off the steroids, they will appreciate the pleasant you. Keep on teaching. |
Re: Gammaknife, Tykerb...reality check
Denise, I surely will keep you in my prayers, oping that all the symptoms that you have go away. I am lad that you have courage for the upcomimg events in your life. Keep the excitment up! For that is what keep us living happy!! Wishing you all the best!!
Paty |
Re: Gammaknife, Tykerb...reality check
Dear Denise, you are definitely in my prayers !! I hope you will get well very soon !
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Re: Gammaknife, Tykerb...reality check
Dear Denise,
Even "hopped up on steroids" you are clever, funny, sassy and inspirational. Thank you for keeping us posted on your progress. If I could take on your symptoms for 24 hours and give you a "day off," I would. Wouldn't that be nice if we could literally carry each other's burdens for awhile? Short of that, I will pray for you and send healing thoughts. |
Re: Gammaknife, Tykerb...reality check
Thank you for sharing, and for being you. Prayers going up, my friend.
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Re: Gammaknife, Tykerb...reality check
Oh, Denise...even though we live far away and will probably never meet in person- you are such an inspiration to me. Prayers are on their way.
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Re: Gammaknife, Tykerb...reality check
You never cease to amaze me. Still praying for you and hoping that you start to feel well soon. What a journey you are on and still so inspirational to all of us. We are blessed to have you. Take care and rest. Darlene
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Re: Gammaknife, Tykerb...reality check
THANKS for the update, with good news that you are moving ahead with opening the school year and carrying on your social life.
Those are exactly the type of things I did after my Gamma Knife treatment. Even on the every 8 hours of Decadron. These treatments do not shut us down, but gives us the ability to go on with our lives as best we can. Sleep is erratic and the "buzz" exactly 4 hours after each dose can be dealt with once we know it is coming. Easy to become quite chatty, as if we are on speed! My rad onc said it is normal to have some additional "flair" in the treated area. But that does settle down. You ARE doing this and will continue along in a graceful manner. Healing hugs. |
Re: Gammaknife, Tykerb...reality check
Hi Denise,
My thoughts are with you. I had a similar experience with radiation. Be careful that you do not fall. I tripped and went flying through the kitchen. I was also totally manic on steroids. It will get better, but be careful. Kind regards, Barbara H. |
Re: Gammaknife, Tykerb...reality check
Hi Denise,
You are a rock star! Thanks for sharing and good luck setting up your classroom with your sons. Your students are very, very lucky to have such an awesome teacher! May you continue to heal from this experience which I'm sure you'll put it behind you! Marcia |
Re: Gammaknife, Tykerb...reality check
H Denise,
You are amazing! I had just retired from teaching when my world fell apart with surgery to repair the rotator cuff and then brest cancer six months later. I cannot tell you how many days I have wished I had my class to return to. It sounds like you have two fantastic sons. (I wonder where they got that :) ) The swelling will go down. The steroids are a pain, but they will help you get through this time. When I was taking the Decadron, I would take a couple Benadrly to help me sleep. Your doctor may have a better suggestion. You will get prayers tonight from south Georgia for peace, healing, and continued good spirits. Hugs, Sandra |
Re: Gammaknife, Tykerb...reality check
Denise,
I adore you and I lift you up in prayer. Shine on my friend. Leah |
Re: Gammaknife, Tykerb...reality check
You are amazing. Just think of every symptom of treatment as cancer killers. And the symptoms are just that - getting rid of the physical corruption within but still maintaining the beautiful you - spirit and soul.
As an fyi - the first Reclast infusion can also do a number on the body. Subsequent infusions will not be as major. May be what is bothering your knees as well as anything else. You are just so - astonishlingly amazing. Love and hugs to you |
Re: Gammaknife, Tykerb...reality check
Denise, you are a Wonder Woman Warrior!!
I am sending big hugs and prayers for a swift and complete recovery to you from Canada. all the best caya |
Re: Gammaknife, Tykerb...reality check
Hi love your post,
Kinda went thru the same thing after my 2 gamma knife, steroids radically do not agree with my body, increase weigh loss of muscle and very high blood sugar! not fun BUT doable!!! I had to remember not to spin my head to fast or here come the dizziness. So I got my favorite puzzles out, and worked till the wee hours of the morning, wasn't strong enough to clean house, Darn. At the next appointment the gave me some Ativan. And I could actually sleep solid for 4-6 hours. Keep fighting, be safe with your balance, will be praying for you!!! Darita |
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