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Good News / "Bad" News
Okay...
So I think I'll file this one under "can't I catch a break...ever?" The other day when I went for my Avastin infusion, I had what I thought was prickly heat under my "good" arm... seemed logical... we heavy-set people tend toward that. :) When I showed my onc, she became slightly alarmed and told me that no, it was in fact folliculitis and would require a 7 day course of antibiotics. Okay, no sweat... we were going away for a few days, but I could enjoy my holiday while remembering to take my antibiotics. Or so I thought. I took the first dose Thursday night. Took the next 2 doses while at the amusement park on Friday. By Friday night my friends, I was feeling mighty low... headache, achiness, fatigue, nausea, and everyone's best friend while stuck in a public place... diarrhea! Saturday, I felt so lousy, I slept almost all day. But... that led to the good news. I slept through my evening steroid dose... and am now weaned to only 1mg/day!! And since I also stopped the antibiotic too, I feel pretty good. Now we just have to make sure the folliculitis doesn't come back! And I'll need to be careful not to fall down while my body gets used to a lower steroid dose. :) Never a dull moment! Love to all of you! Denise |
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Never a dull moment indeed Denise! Glad you are feeling better now, and I hope you don't have to go through all that again.
I'm impressed you were at an amusement park - I went to one recently and ended up with a cracked rib after a particularly severe knock from another dodgem car! Cheers Marie |
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Oh, Denise,
Glad to hear you're on the mend, but that just is crazy... Have been thinking of you, Love Karen |
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Hi Denise I have been thinking about you and wondering how things have been going for you. What a pain you had to go through that. All I can say is I have this vision of you Denise, running down the track flying over hurdles. I always am astounded watching those athletes doing this. They just seem to fly over them and keep on going. You are so strong and you keep that wonderful sense of humour no matter what is happening. Stay strong.xo p.s. I always try to put a happy face at the end of my comment but always ends up at the top. Dont know what I am doing wrong
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Hi Denise,
Glad you are feeling better, sorry you had to go through all this bull... Keep up your amazing sense of humour sweetie. all the best caya |
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Thanks, friends!
I know I can always count on you guys to wish me well! Marie... in the spirit of full disclosure... I didn't actually go on any rides... I just watched. I'm dizzy enough in my natural state, I don't need rides to make it worse! :) Lois - to get the smiley to show up... right in the text, type a : for the eyes and a ) for the mouth. The site changes it to a :) for you when you post it. |
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Well, Denise, you sure do know how to have a good time!! Glad you are feeling better. Thanks for the :-) lesson!! :)
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Denise,
I always know I am in for a "roller coaster" of events when I read your posts- the one thing that never goes up or down is your wonderful humor and gift of positive perspective! Prayers that the folliculitis stays the heck away and soon you'll be all the way weaned :) |
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Sorry to hear about your foliculitis, just had that too (well doc's not positive) I was surprised what a downer it was but , got the prize of pre chemo steroids cut in half one dose early.... Yeah for your 1 mg!!!! In my short time on this site I have learned so much from your always positive spin on things and had some great laughs from some of your posts! Be well, my friend :)
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Coux92 - aka Kutaki
Thank you so much for your kind words! I'm glad I could lift your spirits a little - makes me feel like I'm contributing around here! :) Sorry about your folliculitis. Did you have to take antibiotics to get rid of it? They stopped my antibiotics because I felt so badly... but my doc is on vacation and the one covering didn't prescribe anything in its place. She said I should wait till I go for infusion on Thursday to be "re-evaluated". I told the nurse, "there's really no need to 're' evaluate. The infection is the same as when I saw my doc 3 days ago and she was alarmed by it. They insisted Thursday was soon enough. If this turns into cellulitis... heads will roll! The trial transcript will read something like this: Judge: Miss Denise... tell us in your own words why you assaulted Dr. (?x?) Me: Well your honor... it's like this... I had a small infection. Dr. (?x?), who it now seems clear to me has ^%#$ for brains, did not take it seriously, even though I had been on steroids for over 8 months at that point, and was slightly immune suppressed. Judge: Hmmm... 8 months you say? Me: Yes, your honor, since Christmas time. Judge: And do you have actual evidence of fecal matter being present in Dr. (?x?)'s cranial cavity? Me: The test results are still pending your honor. Judge: I see. Please continue. Me: Well your honor... even knowing that I was immune suppressed, Dr. (?X?) refused to prescribe an antibiotic for 5 whole days while the infection raged on. Judge: Sounds unpleasant. (HER2 friends in the courtroom all murmur their agreement) Judge: Order, please. Me: As a result of her negligence, I developed cellulitis, your honor. In case you're not familiar with that condition... I Googled it and brought you some pictures. Judge: (makes a "what's that terrible odor" face while viewing photos, gags a little, then looks up) Me: And, your honor, it feels worse than it looks! Judge: Yikes! That's hard to believe. Me: So you see your honor... she got what she deserved. Judge: Clearly. (HER2 friends in the courtroom cheer!) Judge: Case dismissed. Not Perry Mason, but I think I'll get off. I hope her own patients get better care from her than I did! :) Denise |
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Oh Denise. The bad news sucks (meaning the "itis" thing). The antibiotic reaction I am all too familiar with and so doubly sorry to hear you experienced it all, midst public restrooms! (I now know -- though my docs insist I am not "allergic", they admit I have severe adverse reactions) to Augmentin and Plagyl!!! I have this marked in red and underlined on all my meds info sheets (which are reams long as you can imagine).
What did they give you??? The good news, re steroids, I cheer. The vignette you presented is of course delightful to read, but still I pray doesn't become necessary. An infection that required antibiotic and is unchanged should not be ignored! *#$! for brains doc is clearly afraid to do anything and has chosen to therefore do nothing. (I will be in the courtroom cheering you on if need be, I promise!) Thank you as always for your entertainment and I must say ever inspiring posts! YOU ARE THE GREATEST SHERO EVER, DENISE! Talk about tude, you have it, sweet lady! I love you, ANDI |
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Always enjoy hearing from you, Denise. Thanks for the update. Glad you're feeling better.
Love, Penny |
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Andi
I actually had a vision of you and Flori standing on the courtroom benches cheering! They gave me Keflex... which I had never had before, and won't be having again. Interestingly, my oldest son has a very bad reaction to Augmentin too... good people sharing a bad thing! Be well! And enjoy your good news! Denise |
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Penny!
Great to see your name pop up! I hope things are well with you! Any news to report, my friend? Prayers and love headed your way! Denise |
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Well, as we always say around here "crap on a crapstick"!
I can't think of many people who deserve a break more than you but I guess God thinks you can take it since you keep bouncing back. Like those clown balloon things we used to punch when kids. Remember those? |
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Oh, Denise, I would be alongside you in that courtroom! That Dr. @#$# for brains would have no chance with all of us beside you!
Dawn xxx |
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This is so weird - I just logged in to send you a PM - which gave me an error message to try again in 19 seconds (wtf?). Apparently I don't even have 19 seconds of patience left today, so I jumped to the boards and see THIS thread! Which is hilarious - but NOT. Dr. Poophead is an IDIOT. AND, also, for the record, your honor, there are too many Dr. Poopheads who poop through life, unaccountable for the harm they wreck. (Is that even English?). Well, Denise dear, you do set a high bar for good attitude. Which I appreciate, because it makes it easier for me to walk UNDER that bar, with my poopy attitude, shoulder chips, and jumbo CANCER CARD, that I am playing like the lotto!! Hope you get what you need on Thursday. I'm getting infused Thursday, too. Will send you good thoughts!!
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Denise~
Seriously - you DO deserve a break!! Glad to hear you are feeling better. Getting off those steroids is another BONUS! |
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I would be happy to cheer you on in that courtroom! I did have 10 days of doxycycline and was shocked that I tolerated it quite well, yogurt with live cultures religiously may have helped. My onc had sent me to a dermatologist , she even popsed some pustules to culture... They didn't grow , most likely since I had been on topical abt ointment..praying for no cellulitis! Hope that one mg is being kind to you
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Re: Good News / "Bad" News
You are funny. A good example of mixed news.
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Denise,
I can't believe the drama! If it was my doctor I would have been in the hospital on IV antibiotics most likely. I enjoyed your courtroom drama. Please tell your medical team to take better care, as no one cracks us up like you do! We can't do without you. |
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I am glad the case was dismissed as I surely would have not liked having breakfast with you today in jail. Where is the closest jail around here anyway? I hope your drive home wasn't as eventful (wet) as mine. Took me twice as long to get home as it took me to get there.
Remember....3 months....you can do it! oxo |
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Thinking of you dear Denise, and hoping that you are beginning to react well to the new antibiotic. Just got back from your "neck of the woods". Ocular oncologist and medical oncologist appointments in Philly. Thankfully, they were good appointments. Glad tobe home.
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Denise!
Damn it all I peed my undies laughing at your courtroom drama! Honey, you need to be doing stand up! I'd pay to see you! Seriously, I would. Thanks for the chuckle. I appreciate your humor, wrapped in courage, tied up in awesome! Thanks for being you. |
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Hey Friends!
Saw my "real" nurse practitioner today. She decided I DO still need an antibiotic, but we agreed that a topical might be better than a systemic treatment. So, and I think this is so cool... she prescribed an antibiotic powder... so I won't have to have creams or ointments making my underarms all slick and slimy. I didn't even know such a thing existed! Barb - I'm so glad your appointment news was good! You were due! Laurel - you are a great audience! As for stand up...I'd be afraid of hecklers... no, strike that, I'd be afraid FOR hecklers if I ever did stand up... they'd give me a hard time and I really would end up in court! :) It's safer for everyone if I confine my humor to my HER2 friends. So... I'm still on 1mg/day of the dreaded dex... but my symptoms aren't any worse. So far so good! I hope on Monday I can wean to 1/2 mg/day. Then, maybe I can get serious about losing some of this extra weight! I realized something amazing tonight! Last May, I had to walk from the parking lot to the high school stadium for my younger son's track meet. I was so weak from all the steroids that I literally huffed and puffed all the way there, and had to stop and rest a couple of times on the way. Tonight, I had to make that same walk for my other son's Marching Band show. No huffing or puffing at all. No stopping to rest on the way. No being passed on the path by a guy using a walker. (yep, that really happened back in May!) This time, I talked all the way there, and wasn't even winded. A little off balance maybe... but not tired! Now, that's what I consider a real improvement, and a good sign! God is good! Thanks for checking in on me! Denise |
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Always guaranteed a smile reading your updates - probably to be honest a real laugh out loud followed by one of my coughing fits and if really lucky some reflux but hey - theme the breaks!
Glad of your mostly positive news. Wow 12 months on no huffing and puffing - that's progress. Xxxxx |
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So, did these new antibiotics do the trick? I am so glad that you are feeling better and having more energy. Having that energy makes all the difference in the world. Now if we could just get you off those $&*^% steroids!!! You are so strong and such a fighter and maintain such a positive attitude and sense of humor...I truly admire you. Sending lots of positive energy and prayers for continued healing.
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Denise, you crack me up. I am glad you are feeling better.
I think of you often and pray for you on a regular basis. |
Re: Good News / "Bad" News
Hello my Friends,
Yes! The folliculitis is nearly healed - so no cellulitis... no assault on Dr. (?x?)... and sadly, no court appearance. I was looking forward to seeing some of you there! Unfortunately, since last Friday, I've been suffering from a raging sinus infection. Now, any who have had such a sinus infection know that it can cause headaches, face pain, extreme fatigue, changes in vision, and dizziness. Coincidentally, those are the same symptoms I experience when my brain edema flares up. So, you can imagine how scared I was until Monday, when the antibiotics for my sinuses started to alleviate those symptoms. I hate cancer! Still, a little concerning, but I'm hoping can be attributed to pressure from my sinuses... and not pressure from increased brain edema, or, God forbid new cancer... I'm still pretty off balance when I stand or walk, and my right hand is very "shaky" and a little spastic. I even bumped the dex back up to 2mg/day yesterday. It was the first day of school for my boys, and there were scores of forms to be filled out and/or signed. My shaky, spastic right hand was having none of it. Sooooo frustrating!! If my hand shakes when I need to pick something up... big deal. Typing is no treat...but that's what backspace is for. If I have to be extra careful when I cut up veggies for dinner... no sweat. But when you can't print legibly, or even sign your own name... it's pretty scary... and makes me a little sad. I don't know how people with Parkinson's cope! I know I should be grateful... thank God it isn't worse! But, sheesh! On a more positive note... For the first time since this whole cancer nightmare began... I have gone 7 entire months without a fall, injury, surgery, or ER trip!! Woo Hoo! Yay me! (That's actually why I bumped up the dex yesterday... I was afraid I'd fall and end my streak!) BTW, my previous record was 4 months. Sad... but true! I chuckle to myself sometimes when I remember that when I shattered the bones in my wrist last summer... it wasn't even the worst problem on my list... my brain tumors got diagnosed before I could even get my wrist fixed. What would likely be someone else's worst injury/surgery in their life... was barely a bump in my little stroll through hell! :) And frankly, the pain in my back and leg last Christmas makes every other pain I've ever had seem like a stubbed toe, by comparison! I really do believe that God has a plan. And that things happen for a reason... But seriously... this is all more than my little brain can figure out. I've mentioned in prayer on more than one occasion that "somebody's got some splainin' to do" when DECADES from now, God calls me home. Thank you all for checking up/in on me. I appreciate it more than words can ever convey. My friends here at HER2 Support are one of the greatest blessings in my life. And, I'm so glad you get a smile or a laugh out of my posts. Cancer HATES to be laughed at... and anything that cancer hates... I LOVE!! Please, keep praying for me... or sending healing energy... whatever it is you do... it helps, I know it does. My echo is on Friday. (not expecting a problem...but) My brain MRI is Monday. (arghhh... stress x 10) I hope they both are okay. (the understatement of the year!) I'll be sure to let you know when I find out myself. Sending love and light to all of you! Denise |
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Oh Denise - you are so brave. I've often wondered how you can be so positive and joking about what you are going through. I admire that quality in you. I on the other hand "pretend" to accept the cards I have been dealt but I am far from accepting. I HATE cancer and I HATE how we all suffer from it! I do not understand why this happens and I can't even pretend to understand. You are a remarkable person for being so accepting of what you are going through. You are in my prayers. Hope your test results are good. You deserve it! My next PET scan is November 5th. Dreading it already. Take care!
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Denise, Im laughing so loud at all the
Cancer cells right now.... Killing them with Cackles, and praying for great MRI results For you! :-) |
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Kept the faith. You do it well. XOXO
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Thinking of you Denise. Lots of prayers and healing light coming to you dear girl!
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Cathy,
My Sainted Mother used to tell me... Don't worry about things you can't change. Sort of her take on the serenity prayer I guess... but simpler and older, too. I try my best to do that. She also used to tell us to "offer it up" for the souls in purgatory... remember that one Catholic friends? My Mom was wise, but not infallible. Well, since I don't think there is a Purgatory anymore... it went the way of Limbo (the place for unbaptized babies, not the cool dancing game)... and "buying Pagan Babies". (Thank God! How embarrassing and condescending!") I guess I could "offer it up" for world peace or something else. But really, I gotta say... I have trouble believing that my loving God wants me to suffer, let alone offer it to him as a gift. Ick! What kind of wrapping paper do you even use for that?! Are there "suffering gift bags" at the dollar store? If, as I believe, God loves me even MORE than I love my children... suffering is not something he wants for me. I struggle with why it happens at all... but refer to earlier "spainin'" comment. Parenting ain't easy...I'll grant Him/Her that... but I don't think even God wants to deal with the monumentally angry tirade/rant/hissy fit when I get to heaven... if that explanation for my suffering is "lacking" in any way! ") The other thing I find so helpful is part of the "Fish Philosophy" (it you don't know what it is, Google it...it's worth the time) The four 'precepts' of the philosophy (made up by some regular guys doing a tough, stinky job in an open air fish market!) are : Be there (be FULLY present to whatever or whomever you are with at the moment - focus on the now) Play (find the fun and humor in everyday things - these guys even made hauling smelly fish into a game) Make their day (If you have a chance to give a genuine compliment, even to a total stranger... don't let it pass. If you know of a way to make someone in your life feel special, cherished, loved... do it!) and the most powerful one of all... CHOOSE YOUR ATTITUDE (everybody has troubles... EVERYBODY... and it's up to each of to decide us how we choose to deal with those challenges. No one has a "good day" everyday... but EVERYONE gets to choose their attitude EVERY minute of EVERY day. That's so empowering to me. As a control freak... being able to choose, rather than taking what I get... appeals to me! And many, many times I've caught myself choosing an attitude that was, shall we say... unattractive... unbecoming of a lady of my style, faith and intelligence. :) When that happens, I give myself a mental slap on the back of the head (A Gibbs Smack, NCIS fans!) and choose a new attitude... a better, more attractive, not horrible to have to be around, attitude.) Well, that certainly got long fast. Sorry if it rambles... no time to proofread it now... I'm off for my echo and Avastin! Fingers crossed! Denise |
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Hi Angel,
I love reading your musings about the justice of suffering and our every day choice of something as simple as our attitude. And truly that choice does ripple forward and affects many many others who cross our paths. I confess to having many of the same thoughts and even more questions. Your words are not a ramble, instead, I find them honest ... raw, and it is us - to a "T" and expressed so NEDenise eloquently. Please keep your thoughts coming and I look forward to hearing about a continued and great response to Avastin. Hugs and hugs, Kim (from CT) |
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Thanks for the vote of confidence, Kim!
Always good to see your smiling face pop up to cheer me. Tomorrow, Monday, is my next brain MRI - fingers crossed - but no gut feeling one way or the other this time. My blood pressure is all over the map, and I'm hoping they're not going to hold up on requesting more avastin from the ins co in that case. And then, there's always the possibility that the Avastin isn't doing its job anymore and then... AAAAAAAAARRRGGH! I'm really up the creek! On a brighter note, I have a good feeling that my echo on Friday was okay... so at least they won't yank Herceptin or Lapatnib. :) Be well! With love... Denise |
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Please keep us posted on the results of your brain MRI - roller coasters aren't fun to ride alone...XOXO
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Goodness this makes me cringe on behalf of all doctors. I wish you lived in Brisbane, Australia, where my wonderful sister is a general practitioner (= family physician) who would look after you much better.
Here you would have been given a prescription for antibiotics to keep on hand for emergencies like this, if you were immuno-suppressed. Your adrenal gland can take time to kick in again to produce its own steroids again. I've just read that your adrenal recovery can be helped by diet including: - fat, both saturated and not-saturated. Cod liver oil is especially good as it also supplies vitamin A, which is necessary for the adrenal cortex to make adrenal hormones out of cholesterol. - vitamins B5 (pantothenic acid) and B6 (especially the co-enzyme form of vitamin B was mentioned) and vitamin C. Best obtained from food sources or whole food supplements. - a limited sugar and carbohydrate consumption. -Reduced caffeine and caffeine-related substances. -Avoid too much alcohol use, lack of sleep, overwork, and stress. Website didn't say anything about chocolate but it can only assumed to be good for your adrenals. If you feel very faint and tired, check with your doctor. best wishes Aussie Girl |
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Aussie Girl,
First, to be fair, and in the spirit of full disclosure... My OWN docs, both onc and gp have been on the ball! It's those pesky subs, who don't want to get involve, that muck up the works. Next, thanks for the ideas on how to jump start those adrenal hormones with diet. Sounds like a plan, especially since it calls for the reduction of stress and an increase in chocolate. How can anything that includes those two components be bad!! And, since I prefer dark, dark, chocolate, it shouldn't even effect the carbs/fat caveat. Stress... hmmm... well after the brain MRI this morning... I'm hoping to be relatively stress free for a few months. I hope God's seeing things that way too!! Be well everyone! I'll keep you posted! Denise PS Aussie Girl, since you're a doctor... I'm counting the chocolate thing as a bona fide prescription, to be filled... STAT! And BTW, my teenage sons are so smitten with all things Australian lately... Brisbane sounds great to them! :) If airfare weren't more than my mortgage payment... they might have had a shot at a visit! |
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OK, DENISE!
I LOVE YOU. I LOVE YOUR POSTS. I LOVE YOUR ATTITUDE. + I LOVE YOUR PHILOSOPHY (THE FISH ONE ESPECIALLY!)... YOUR HUMOR SLAYS ME EVERY TIME. NOW I AM AWAITING N E W S ... DETAILS. DOESN'T HAVE TO MAKE US LAUGH, JUST TELL US YOU AND GOD SEE THINGS THE SAME WAY. PLEASE LORD. IF NOT, WE CAN ALL BE VERY PERSUASIVE WITH OUR PRAYERS! HUGS, Andi |
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