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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 |
Re: Gammaknife, Tykerb...reality check
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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