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NEDenise vs NEDecadron Smackdown!
Sounds waaay more exciting and fun than it really is...but I got your attention! :)
So...since several of you have so sweetly PMed...patiently waiting for an update...which by the way I am so touched by...I thought I'd better just jump in and post. I'm okay. Not great, but not terrible either. Cancer is definitely not winning...but Decadron and brain swelling are making things pretty crappy. I have scans tomorrow (Monday), and I see the neurosurgeon on Tuesday. But honestly...I already know what's up...my brain is swelling because the irradiated lesion is BIG, and my poor body just doesn't know what to do with all that dead tissue. So...the fluid builds up I start to lose control of my balance... my right hand starts to shake I end up in bed...laying around for hours/days...feeling nauseous, tired, and head-achey... I take more Decadron for a few days... The swelling in my brain goes down but the swelling in my face and neck increases (you can't imagine what I look like right now, and vanity will not allow me to post a photo...but trust me when I tell you that I don't even recognize my face in the mirror) I'm embarrassed to admit it...but there are days I just want to stay home, so I don't have to risk meeting anyone I know, looking the way I do. And...of course, the longer I'm on these steroids, the more out of breath, fat, and weak-legged I get. Brain mets are not for the faint of heart. I'm not expecting any great revelations from the scans...and I know already that surgery to remove all the dead tissue is ABSOLUTELY NOT an option. The whole gooey mess is just too close to my brain stem...and the surgeon has been clear from day one that cutting there would almost certainly kill me. I've asked everyone on my med team if there are other options for reducing the swelling...and so far...nothing. So, friends, here I am...8 months after the GammaKnife procedure...battling the swelling...and nursing a codependent love/hate relationship with Decadron. It keeps me from seizures or stroking out...but it also makes me look and feel like a freak! (Grotesquely bloated is the phrase that comes to mind!) Now...for the positive spin we all know floats in my heart and my crowded brain! I'm not dead. (yay me!) I'm not planning to die soon. (and we all know how stubborn I can be!) Decadron...though the side effects suck...works. I don't have any cognitive issues at all. My family is awesome, and I get to spend every single day with them. My body is NED...and I think my brain is too. My sense of humor is still intact...and I laugh often. On bad days, retail therapy works very well on the internet. :) I have my beautiful friends here...to whine to, lean on...and draw strength from! And...I know that God has a plan for me. I just hope it's one I'm going to be happy with... So...surprise, surprise...a looooong post from Denise. Sorry. But it's been a while and there was a lot to share. Please keep the prayers, healing energy, good juju, and love heading my way. It helps more than I ever would have imagined. Sending love to all of you! Denise |
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Denise,
Hang in there. You have a great attitude. Does your scan show the swelling or do you just go by the symptoms you are currently having? (remember my mom is also having a lot of the same problems) KG |
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PS I wish my Mom had the positive outlook you have.
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Hello Denise,
You are an incredible young woman. I marvel at your humor and insight. My thoughts are with you often. What I find most amazing is you are going through such a difficult time and yet I find that you so often posts words of comfort for others. You are a peach, dear Denise. Take good care, Jackie |
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Dear Denise,
Thank you for the update. I understand that sometimes you do not even feel like writing. And here you are, giving us some of your time to keep us posted. I wish you the best for the scan results tomorrow. I will be praying for those results and for your well-being. You have an excellent attitude and that is a great example to many. I wish that the swollen areas go back to normal again soon and they do not interfere on the vanity issues (LOL). Wishing you the best Denise. Please forgive me if I do not write much, but I always read your posts. God bless you dear. |
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Oh, Denise...you remind me of an old VBS song..."theres no one else, just like you! Theres no one else, just like you! You're you! You're you! Theres no one just like you!" Thanks for the update and prayers for something that will reduce the s/e of the 'roids for ya.
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I just love you and that attitude of yours! Keep the faith
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Well http://cdn-cf.aol.com/se/clip_art/pe...s/yeahyou-clip DENISE!
You NED DENISE have this canser thing down. I am glad you're okay, which coming from you means as you say, not great, not terrible. On those days, I used to say when people asked -- tomorrow will be better. And that is what I'm hoping for you. We will all await your report back from the scans and neuro guy (I hate when the doc's nomenclature is his area followed by surgeon. Cause what do they believe in?! Surgery. But I hear your emphatic ABSOLUTELY NOT happening and that sounds like just the way I'd respond to such an idea.) Yes, your body is confused by the new goop/dead tissue in your brain. Tell it to settle down. Dead tissue is a good thing. Is there hope of it shrinking on its own? My dead remains of tumors in my liver just hang there it seems. Each set of scans shows stable. I reassure my liver all the time that these new neighbors are harmless and to chill out. Perhaps a chat with your brain might help. Couldn't hurt. So it's the fluid build up that is resulting from the necrotic tissue that's the issue, causing the imbalance? Steroids help that, so you have no choice (if there are no other options) to go w/that. You can't be falling and breaking other body parts. So bed rest at dizzy times is essential to your well-being. (I had no balance problems midst my 10 yrs of Vit H, yet managed to skid as I stepped off a curb into a giant gravel-filled pot hole with a smaller pot hole at the far end where my foot got wedged into a position no ballerina could accomplish. That was followed by surgery w/pins and plates and 3 mnths of a cast above my heart, which isn't easily accomplished. That was followed by 6 mnths of physical therapy cause my brain, as docs warned, forgot how to walk. Talk about balancing problems. I sponge-bathed in front of the sink while standing on the 1 foot I was allowed to bear weight on. So not easy...) I have a friend with some weird affliction, autoimmune nonsense that forces her to infuse weekly lest she get sick every 8 days, and she is on steroids, forever. So her usual petite self has been replaced with this very round version of her old self. But her new self is full of a shining Spirit, a happy, loving, smiling Soul who is grateful to be alive. DENISE YOU ARE SO MUCH MORE BEAUTIFUL THAN YOU THINK YOU ARE. Once you open your mouth, your True Self just sparkles all over the place and makes everyone want to gather round and be near you. I know that unfamiliar face in the mirror is horridly disconcerting. I dab makeup at it for camouflage, struggle to get my curly locks to go where I want them to vs places where they conspire against me, put on earrings and something comfortable and yet stylish -- and face the world -- anyway. Denise, you totally rock. PRINT OUT YOUR POSITIVE SPIN AND POST IT AROUND YOUR HOUSE. Keep it in your beautiful face all day, every day. (My favs from that list are the obvious. Your sense of humor is well in tact. I can sense you laugh often. And you cause others to laugh along with you. What a gift! Your cognitive abilities are apparent in your fabulously written posts every one! And I completely relate to your retail therapy by Internet. http://cdn-cf.aol.com/se/smi/2b00001c91/06 It's so wonderful to shop around from site to site for the best buy, to figure out how not to pay for shipping and then have surprise packages arrive at your door, like it's a party gift. God's plan is your plan. For you to continue to shine through this dismal time and come out a newer, better, more evolved and even more enriched human being. I send you my prayers as I send them up, I am forward healing energy and empowerment to you as my fingers dance on the keyboard. Keep venting and let your radiance shine through. You are textbook perfect as a patient and I hope will soon only visit docs cause you're due, cause you'll be fixed and will be living as NED Denise. Love to you my dear Sister, Andi |
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Denise,
I am at a loss for words. Other than to offer you love, hugs, comfort & prayers. You ARE keeping the Faith my friend. Hang on tight! Jessica |
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Hang in there Denise! Remember words of wisdom from TriciaK, even the bible states "and it came to pass" - not "it's here to stay".
Awaiting your results as anxiously as you are dear one. Love and hugs from me. |
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Thinking of you dear Denise and sending many prayers and healing thoughts to you!!
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You sure have had your ups and downs. I know things are not pleasant for you right now, but please know all of us are hoping you will be feeling better soon.
Take good care of yourself and keep putting one foot in front of the other. |
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Prayers for you daily, Denise. I'm really glad you took the time to update us. Sending best wishes for tomorrow and then your appointment. Hugs.
Barb A. |
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Denise, I'll say it again, but you are amazing. I say that quite a bit on this forum, and to others, but it's true. The spirit that you, and many others have, is incredible.
Sorry you continue to struggle with the side effects, but I believe that it will come to pass as well. Your attitude and the love surrounding you, is and will be a great strength to you! Sending you a healing hug for the scans..... Cheers Marie xx |
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You always let that "light" shine Denise!
I know that positive Attitude will stand you in good stead dealing with the SE's and kicking cancer to the curb. Prayers for more good news and continued improvement. |
Re: NEDenise vs NEDecadron Smackdown!
Sounds waaay more exciting and fun than it really is...but I got your attention! :) Yes, you certainly did, you little stinker, you!
So...since several of you have so sweetly PMed...patiently waiting for an update...which by the way I am so touched by...I thought I'd better just jump in and post. I'm okay. Not great, but not terrible either. Cancer is definitely not winning...but Decadron and brain swelling are making things pretty crappy. I have scans tomorrow (Monday), and I see the neurosurgeon on Tuesday. But honestly...I already know what's up...my brain is swelling because the irradiated lesion is BIG, and my poor body just doesn't know what to do with all that dead tissue. You know, Denise, here in Pa we just let the vultures take care of our road kill. Saves $ and feeds the birds at the same time.....how brilliant. What we need is something akin to a vulture that goes in and cleans up the goo. Decadron reduces the associated swelling the goo causes....hmmm. Some M.D. needs to see this most excellent analogy and get back into the lab! So...the fluid builds up I start to lose control of my balance... my right hand starts to shake I end up in bed...laying around for hours/days...feeling nauseous, tired, and head-achey... I take more Decadron for a few days... The swelling in my brain goes down but the swelling in my face and neck increases (you can't imagine what I look like right now, and vanity will not allow me to post a photo...but trust me when I tell you that I don't even recognize my face in the mirror) I'm embarrassed to admit it...but there are days I just want to stay home, so I don't have to risk meeting anyone I know, looking the way I do. And...of course, the longer I'm on these steroids, the more out of breath, fat, and weak-legged I get. I may be revealing my bias here, but my bet is you are still quite beautiful...altered perhaps, a new face in the mirror which is disconcerting, but beautiful, smiling, weary perhaps, haggard on the off days, but...alive, breathing, functional, cognizant, HERE. And just lovely. Brain mets are not for the faint of heart. I'm not expecting any great revelations from the scans...and I know already that surgery to remove all the dead tissue is ABSOLUTELY NOT an option. The whole gooey mess is just too close to my brain stem...and the surgeon has been clear from day one that cutting there would almost certainly kill me. I've asked everyone on my med team if there are other options for reducing the swelling...and so far...nothing. So, friends, here I am...8 months after the GammaKnife procedure...battling the swelling...and nursing a codependent love/hate relationship with Decadron. It keeps me from seizures or stroking out...but it also makes me look and feel like a freak! (Grotesquely bloated is the phrase that comes to mind!) You are in good company among many newly annoited "freaks". Just think of the newly burned, disfigured, limbless souls in Boston. They are still beautiful and breathing. You are so wonderful on the inside that I know you glow on the outside. These many changes that present themselves challenge our sense of who we are, I understand a bit with my gray hair and double chin, but the inside? Now that is only getting more interesting, growing, surrendering, stalwartly forging forward, trying to be grateful, and gracious.... Now...for the positive spin we all know floats in my heart and my crowded brain! I'm not dead. (yay me!) I'm not planning to die soon. (and we all know how stubborn I can be!) Decadron...though the side effects suck...works. I don't have any cognitive issues at all. Clearly not! My family is awesome, and I get to spend every single day with them. My body is NED...and I think my brain is too. Me, too! On bad days, retail therapy works very well on the internet. :) Are you a QVC gal, too? I have my beautiful friends here...to whine to, lean on...and draw strength from! And your many friends here! And...I know that God has a plan for me. I just hope it's one I'm going to be happy with...Funny how He never consults us on His plans for us. I think this odyssey and adventure of yours has great purpose. You have blessed me enormously, more than you can imagine, and I am just one. When you arrive at the pearly gates decades from now that crown on your head is going to weigh a ton. Better start neck exercises now is my sage advise. Back in the 80s I used to exercise to a Jane Fonda tape. There was an exercise where you inclined your head forward, back and side to side. In my twenties I thought it a ridiculous waste of time, but now let's just say I get it! And to think the things I used to say to poor Jane as I did those butt lifts! I repent of the awful things I said.....! She did help my butt. Now it sags into my shoes..... So...surprise, surprise...a looooong post from Denise. Sorry. But it's been a while and there was a lot to share. Please keep the prayers, healing energy, good juju, and love heading my way. It helps more than I ever would have imagined. You got it, kid! Sending love to all of you! Right back at ya! |
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Yes, you have my attention as well; 200%!!
Happy to hear you are OK. Sometimes OK is the best we can do given the circumstances; and honey, you are right; you have some circumstances. I hate that you just feel lousy. I also hate that we can not wave a magic wand and give you the gift of health or at least the feeling of good health for even just a smidge of time. So instead, good juju, prayers, chocolate, lovin' up hugs are wrapping loving arms around you. Attack that retail therapy with a vengeance. When you feel like doo-doo then a little purchase on QVC is a small price to pay for a good mental health lift. XOXO Love and Hugs, Kim (from CT) |
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PS - Becky, thank you for remembering AND reposting the wisdom from TriciaK
"even the bible states "and it came to pass" - not "it's here to stay". Love it; brought tears to my eyes...so much truth. XOXO |
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You are amazing Denise!
In a short time I'm sure you'll be telling us the body "took out the trash" and you're feeling wonderful!! Please keep us posted -- lots of good thoughts and prayers going your way! Rachael |
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Thanks for the update dear Denise - you are certainly a Warrior Woman. You have such a great attitude, I am in awe of you.
Keep well, good luck with your scans tomorrow (praying for great results) and a good discussion with the doc the next day. all the best caya |
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You know, even at my lowest points, you always make me laugh in your posts. You have the most wonderful sense of humor and a positive attitude. I have finally tapered off the steroids, although now I have headaches. Im am not kidding you one bit, in about a week my face is probably half the size it was..not quite back to normal but definitely not in full hot air balloon mode.
Im single, and there is this man that met me when I was first diagnosed who keeps wanting me to go out to dinner with him. He hasn't seen me (obviously!) since the whole steroid effect kicked in. Someone asked me why I didn't take him up on it and I was like...Well, lets see, Im fat, Im bald, I have a hump on my back and what my doctor sweetly refers to as "buffalo neck", I have no nipples...Im really prime dating material right now..lol. So, yeah, I definitely identify. Im sorry you are dealing with all this. Like I said in other posts, I think the steroids are worse than the actual brain treatment. Keep thinking positive, and know how much everyone here adores you, and all the prayers that are being sent up on your behalf. You ARE a warrior woman, and an inspiration to everyone. |
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Denise
I sent you a PM so you know how I feel...I adore you and constantly pray for your relief of all these issues. I join the others as we wait with bated breath to hear from you after todays scans and tomorrow's MD appt. But...I have to say...and I say this with GREAT authority as I did have the pleasure of meeting you face to face earlier this month and I was able to sit for 3 solid hours and look at your face....you are beautiful. I know your reflection is someone you are unfamiliar with, but for those of us who are uninitiated into your world, those of us who never saw you before all this crap happened...well....I really gotta admit...I didn't see a "puffy" person. At all. I saw my dear Denise and she is every bit as beautiful as I imagined her to be. Hold on sister...we all got your back. Love you Leah |
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I just gotta say how much I Love you girl! xx
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Prayers, as always. Thanks for the update - was wondering about you. Jesus loves us!
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Denise,
Thank you for your update. I've been thinking of you daily. I wanted to say that I am so happy that the cancer is defo not winning. I am not so happy about the dex, as I know how it feels to be on the crappy stuff. I am not going off, in fear of the seizure/stroke thing too. I have to wait 4 weeks now for my next MRI to see what's happening. The wait is going to be a challenge. I am here for you. If you need to chat, call me. I know the feeling of just laying in bed and headachey. I get it. So if you want to talk about it, let me know. You can PM me too. We are awesome! We will be OK! Things will get better! ok? Jill |
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Denise,
Love your post! Glad things are stable and Decadron is doing its job. Take care, warrior! Looking forward to your next update... |
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Thinking of you, Denise.... You always make me smile, even when you must find it hard to smile yourself - that's a definition of strength and positivity!
Lots of love from Australia.... Pam |
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Praying for you beautiful Denise...knowing and believing God is Faithful and in Control!! Thank you for allowing yourself to vent...everytime I read a post...I always seem to find compassionate, gentle, postitive and always encouraging words to each & everyone of us!!! Blessings & Hugs!!
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I just HATE cancer. I know how hard it's been to endure my own stuff lately, reading your post reminds me how much we all suffer trying to get well. I am truly sorry you are going thru all of this. Hoping your scan results are good. Hoping that you can soon wean off the dec and start getting back to your old young self. I don't have great advice other than to stay in the moment - it's really all we have and it's the best way to get thru tough times. Sending love and a hug. Flori
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Hi Denise,
So good to hear from you. I love the way you write...and more importantly I love your spirit. Hang on girlfriend...summer is coming and I am wishing you health and healing so you can enjoy the summer! Oh, and if it makes you feel any better, I am fat right now also....that is why I posted my wedding picture from 30 years ago!!! |
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Decadron addiction or stroking out. HHHHMMM! Thinking the pudgy cheeks are not that bad.
It seems strange to have the edema this long. Can they look at some pressure relief device like a shunt or something similar? I know Carol in Malta had some edema as well. She is getting over that after several months. I will go ask some people that your doctor may not know and see what they say. You have a pretty good group of physicians on your team, but sometimes a second opinion from another cancer center may make sense. Good luck and keep buying things on line, but stop using my credit card! |
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Thanks for posting Denise, hoping your face gets skinny again soon!
Hugs to you, my friend Dawn xx |
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Keep it up.All the best.We are both with you.
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Well, Denise - you know the hard stuff falls on us strong women. That stuff gets "old" before it gets "over."
I had the same thought as Rolepaul about the possibility of a shunt. I know someone here who had one and it did wonders for her. She never lost her balance, and was able to get off the dreaded Dex. It may depend on the location of your swelling, but may be better than another drug which could have side effects as well as help. |
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Good attention getter, and appropriate. I hate the puffy face look too.
I hope it gets better fast. Sending love & support, 'lizbeth |
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Oh - I had the Porky Pig round face as well when I had to take the decadron for the inflammation that was impinging on a ventricle in my brain. Fortunately it went away as I did not need the drug for too long, so I completely sympathize with how you do not "look like you."
Yes, I said, "Just call me Miss Piggy!" Let us know how it goes with this idea of the Avastin. |
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Thinking of you today! Hoping you are feeling better. ((hugs)) Prayers and positive energy.
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Me, too! Ditto!
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Denise,
You're still beautiful, even with the new face shape. You still have that gorgeous smile. Thank you for the update. Hang in there. Love, |
Re: NEDenise vs NEDecadron Smackdown!
Hmmm....
Where to begin... First...thanks everyone for checking in, sending love, prayers, humor, and for making me feel better. You are all so important to me...I can't even put it into words. I still find myself in awe of the fact that I have "sisters" who genuinely care about me...all over the world. Amazing! Sooo...unfortunately, all the news from my latest appointments and scans is not what I would call 'good'. It's not exactly tragic either...but certainly not what I was hoping for...which was... "Hey! it all looks great...check back with us in 6 months!" (a girl can dream can't she?) The week that was... Monday~scans...asked for copy of disk...self diagnosed slightly increased swelling...enhanced vascular image looks like fireworks display...very pretty, thinking of having t-shirts printed. Feeling frustrated by lack of shrinkage, but no new lesions. All in all...not too bad. Tuesday~meet with neurosurgeon, he confirms my diagnosis (surprisingly wise, this man!)...does not have report from radiologist yet. I am now steroid dependent, and NEED to get off them...swollen face and neck are minor concerns compared to other health issues, all of which are popping up now...immune suppression, difficulty breathing, muscle weakness... We discuss adding Avastin to shrink necrotic tissue. He will propose it at brain tumor board Thursday PM and get back to me. Might be an insurance issue. Shunt not an option...not really fluid build-up...more a thick goo. Surgery still too risky - his opinion, and more importantly mine. Thursday~See med onc~fill her in...she's on board with Avastin plan. Herceptin infusion. Still not feeling well...but hopeful there's an end in sight to this latest mess. Friday~Neurosurgeon calls. Tumor board wants surgery. Huh?! Enhanced images evidently show not only necrosis but some indication of disease around the edges of the irradiated area. S&*#!! I just can't seem to catch a break! I still say, "Nope"..."too risky...that's an option for waaaaay down the road...if all else fails." He agrees. Since my vote counts most...he will call onc who handles Avastin and see how to get that rolling. My thinking is...if there is cancer at the margins...it's been sitting there, doing nothing, for nearly 9 months now. Stable sounds okay to me. And, with no new lesions popping up...I'm thinking Tykerb is doing good things. Can't really see the upside to rushing into "death-defyingly risky" surgery. So...that's where things sit. Surprisingly, I'm actually not freaked out. Maybe the 'freak-out center' of my brain is located smack dab in the middle of all that goo, and I can't access it! :) Or maybe, I'm just beyond being surprised by the next item in my cascade of bad luck. Or maybe...and I think this might be the right one...I just know in my heart, and in my gut, that this too shall pass. It's not my time yet...and I still have a lot of work to do before I move on. Whatever! Just keep those prayers and positive thoughts flowing friends. I'm counting on them. And you can bet, I'm bouncing a bunch right back atcha! Love to all of you! Denise PS - I'm down to 10mg of decadron/day...from 12mg three days ago...cross your fingers! Still freakishly bloated, but making a little progress. :) |
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