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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 |
Re: Gammaknife, Tykerb...reality check
NEDenise, you are amazing, here's hoping you get some relief soon, best wishes
Dawn |
Re: Gammaknife, Tykerb...reality check
Denise, you are in my thoughts. Your post helps us to understand what you are going through. Although, of course, only the ones who went through the procedure know., it is important for all of us. First because we care about you and second because others who have to face this procedure will be best informed on what to expect. I hope you will be able to reduce the steroids and that the side effects will fade away. Bravo for going on with your life and projects! That's terrific! Michka
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Re: Gammaknife, Tykerb...reality check
Love you Denise! Gee I would love to meet you......(smiling as I write that). I'm possibly coming to the States in Oct/Nov - no firm plans yet, but you never ever know! Of course, you could come to Sydney for some R & R!!
And of course, you are in my thoughts and prayers every day. Love Marie |
Re: Gammaknife, Tykerb...reality check
More love coming your way. I just love your no nonsense approach I bet your school kids do too?
I hope you find comfort in your head soon and enjoy all those dates in your diary!!! Jenny xx |
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Bunty, if you come to see Denise, let me know. I can take a bus down to Philly. Denise and I met in June, and it was love at first sight. She's every bit as awesome in person as online.
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Re: Gammaknife, Tykerb...reality check
Good Morning Friends!
So...new news... My head feels MUCH less "full" today. My son even commented that my eyes don't bulge today! Small steps...start big journeys... :) Haven't had a headache for over 36 hours - quick! knock wood! Nausea is much less frequent...but shhhh...apparently Tykerb can make one "gassy". Knees are feeling better...but have some lower back pain (another familiar weak spot for me...so no big deal) With the help of Ativan...drumroll please...I slept for 6 straight hours last night! Woo Hoo!! In a strange new development... Coffee, my favorite food/beverage since about the age of 12...just doesn't taste so great right now. In fact...most things don't "taste" like much at all right now. Eating has become an adventure in texture, rather than flavor, over the last few days. Crunchy pretzels, milkshakes, frozen chocolate bits... And strongly flavored foods like clams, green olives, anchovies, and sauerkraut...are appealing. I'm just trying to remember to be vigilant about rinsing my mouth...I reeeaaallly don't want to get mouth sores! Now...on to you guys... I'm amazing? Really?? I'm just sitting around...waiting to heal...and asking for your help. Not a tough gig. You're the ones reaching out to someone you've never even met (well except for Amy :) ...) To keep my spirits up, support me, pray for me, encourage me, share the wisdom of your experiences, and remind me every single day, that there are friends out there who not only "get" what I'm living, but are facing that same ticking clock with grace, poise, dignity... And truly, I am humbled and amazed that you take time to be here for me. Grateful! VERY, VERY grateful...but amazed. I hope you're not weary of hearing this from me...but I can't even imagine what this mess would be like without the support of this group! I pray for you all, every day...many of you, specifically, by name...asking for what you seem to need IMHO. :) So, if you end up with a weird "blessing" you weren't expecting...oops! And when I count my blessings...rest assured, my HER2 friends are near the top of my list!! And believe me when I tell you, that's saying something, because I have quite a blessed life...BC or no BC! Marie- if you come to the states...it's a date! Amy- would love to see you again! Love at first sight indeed! Becky - love the image of all the discomfort being worse for the cancer beasties than it is for me! Die beasties, die! Steph - you are my idol in this mess...I look at your smiling face and think...I can do this! Sandra - I can feel how much you miss your classroom...just by reading your words. I'm so hoping I can make this work. I know I could stop teaching, if I wanted to...but I LOVE teaching. It's part of what makes me, be me. What would I do instead? I really, really hope I can manage symptoms, and God forbid, anything new...and still love my job. Darita, Michka, Barb, Jackie, Jessica, Dawn, Brenda...other brain mets survivors, forgive me if I forgot you...you know how that brain fog works! - Thanks for hanging around...letting the rest of us see that life can be reeeaaallly good post brain met treatment! That's a huge encouragement to me on the rougher days! So...I hope all of you feel as well as I do today...because, I'm feeling pretty good! Not good as new....maybe like a gently used car...like at CarSense. I clean up nice...but I'll never pass for "new" again...the bodywork alone gives me away!! Hee hee! Love, Denise |
Re: Gammaknife, Tykerb...reality check
Oh Denise...you make this all seem so doable for others who may find themselves in the same situation...and with humor and love....isnt it amazing that after feeling really sick or impaired, the slightest improvement or rally in our favor is HUGE, and the slightest improvement can make us feel SO much better.....I know what you mean by foods tasting different....I don't know if it is the medicine or what, but I too have been a coffee junkie forever...(aren't all nurses??.) and now I struggle to get down 2 cups a day.....guess I better not send you that get well SStarbucks gift!!!! Hoping each day gets better and your sleep time increases.....your sense of humor inspires me so much...you are lighting many lives and creating many smiles with your posts!!! never stop!
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Re: Gammaknife, Tykerb...reality check
Denise have not been on the boards for a week as we have just moved. You are one wonderful lady to keep us informed of what is going on with such grace and humour. I am sending prayers and big hugs to you as you go through all this. When I read the supportive and wise posts from the ladies on this board I really feel the love. Lois xo
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Re: Gammaknife, Tykerb...reality check
Denise,
I am so happy you are feeling more rested and BETTER! Thank you for the up-date. Sandra |
Re: Gammaknife, Tykerb...reality check
Denise--and everyone else. THIS is what it means to be a support group. The love we share gets multiplied. The suffering that we share is more bearable. The stories of survival (and thriving) give us inspiration and reinforce our faith and courage.
I love you all. |
Re: Gammaknife, Tykerb...reality check
Good "new" day to you as well!
Glad the head is starting to "deflate" a bit - enough that it is noticeable. That does take a few days, then it is goes fast for most of us. RE caffeine. When on the decadron I stayed off any other stimulants as much as possible. That helped the peaks and valleys with that drug be less problematic. Try some tasty herbal tea. I found ginger and some others to my liking. Decadron gave me the "munchies" as well - but I tried not to cave in to sweets. |
Re: Gammaknife, Tykerb...reality check
Denise, I will always be one of your peeps. I have no expert advice, juSt know you are in my prayers
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Re: Gammaknife, Tykerb...reality check
Amy beautiful words thank you.
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Re: Gammaknife, Tykerb...reality check
Oh Denise I love your posts. I'm glad you are feeling a little better.
As for coffee - impost my taste for it on my very first chemo and now can't even smell the stuff without feeling yuck! You are always in my thoughts. |
Re: Gammaknife, Tykerb...reality check
Hello Denise,
I haven't been on the board for awhile, just read your post and learned of your challenges with brain mets. Oh, how I wish this wasn't happening to you! I will be praying for you. Rooting for ya! :) Hugs, Paula |
Re: Gammaknife, Tykerb...reality check
Lois! Congrats on the new home! Missed that smile...so I'm glad you're back!
Paula! Missed you too...glad you're doing well! Steph (please read in a VERY whine-y voice) "But, Steeee-eeeph, I don't like tea! And I really like sweets. And coffee!" :) thanks for letting me share that...cleansing for my soul. Sooo.... I worked a "full day" at school the other day...setting up my classroom. Boy! Was that fun! Seriously! It's like riding a bike...I walked in...got started...it felt like I hadn't been away at all. I did however, notice that... I now sweat A LOT when I'm working. It was 70 degrees in my classroom, and about an hour into my workday, my hair was soaked! Like I had just washed it. Okay...maybe more like after a thorough towel drying...but still! I may have to buy a little fan that actually clips onto my blouse or something! The rest of me was okay...but the drippy hair...yech! And oddly, I didn't even feel that hot...my scalp was just acting like a leaky lawn sprinkler! This journey is nothing...if not interesting. I also ended up so tired (and ache-y) that the following day, I pretty much sat around and recuperated from the day before. (And that, BTW, was with my sons doing all the "heavy" stuff for me) The good news is...teaching is much more mental than physical usually. I seldom have to do as much lifting, pushing, pulling, and stretching as I did this week. So I'm feeling pretty good about being able to pass muster when the kids return. I'm just so excited to get back to being me! All of me! In other news...My face now looks like I am the proverbial fat lady in the circus freak show. My eyes are not bulgy...but my cheek bones are nowhere to be found. It's actually MORE puffy than it's been so far! I've started weaning from the steroids (down to 8mg/day) so I'm really, really hoping that starts the face deflation. I'd post a photo...but it's bad enough that I have to see this...I don't want it out in the world! Still no Tykerb side effects. Yay! Hooray! (Knock wood!) So I'm starting to add fruits and veggies back into my diet...a little at a time. Garden tomato season is sacred in our home... we await it... we celebrate it... we mourn it's end. It's a little pitiful, now that I look at it objectively...but, at any rate...and I've been sadly remiss in my intake. (I've been known to eat enough of those bad boys to get mouth sores, even without the help of medicines!) And, I have it from a reputable source, that tomatoes have tumor fighting properties! So...there ya go! No headaches, or anything else I could attribute to Gammaknife healing/side effects. All in all...feeling pretty darn good! (Except for that whole freakishly fat face thing!) I have an echo next week (baseline for Tykerb/Herceptin combo). And I see the Gammaknife docs the following week...I guess just to check in...because the first post-treatment scan isn't until November. Hope everyone has a great weekend! Love to all my peeps! (And Chris...so glad you're one of them!) Denise |
Re: Gammaknife, Tykerb...reality check
Mornin' Denise -
What a great post - you are almost back to normal. But I LIKE coffee and sweets too - just not in combination with decadron! I recall the feeling of needing a pick me up - especially when the decadron LOW hits and it is not time for bed and dinner needs to get on the table. The sweaty scalp thing is not something I encountered, but the dreaded decadron did cause me some clammy moments. Mostly upon sudden exertion. Hope that SE will dissapate along with the moon face. Just mentioned the dietary things that helped me to deal with the wackiness of the decadron. Since the drug is fighting inflammation, it seemed like a good idea to me to think "anti-inflammatory" with my food and drink intake, hoping that might help things along. Don't know if that actually happened, but I did feel a little more in control. Coming off the decadron is when the fatigue hits, because of the readjusting of sleep pattern and the anxiety of recent weeks calming down. (I think the decadron contributes to the anxiety and that may in turn increase that clammy reaction!) |
Re: Gammaknife, Tykerb...reality check
Denise
You're still the sharpest pencil in the box! Thank you so much for sharing. I love your forge on attitude. Don't change. Love always, Karen |
Re: Gammaknife, Tykerb...reality check
One other thing to know about the post-decadron fatigue. Decadron is actually muscle wasting in its effect and I especially felt that in my thigh muscles (stairs were slow).
So, being active and having to go back to the classroom will be a good thing. I used some theraband to do some leg exercises which helped my comeback from that dreaded drug. Let us know when you have cheekbones again - we want to see! |
Re: Gammaknife, Tykerb...reality check
I just came off a nice couple of months on steroids from a brain thing too! The fat face takes some time, but it does get better...slowly! As mentioned by someone else, the thighs or quads are especially susceptible to the changes that steroids bring! My radiologist didn't mention this, but my oncologist did! A few things came back just because I did them all the time...but it was good to know if I worked at the others...like climbing into SUVs...would get better too!
And I experienced the same thing with eating...I reasoned that the steroids had some effect on that too! Seems I could taste stuff like sweet or salty, but not much more detailed than that! |
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