March 2011 chemo-lounge
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Silia: no wonder woman here..just a tightly wound type A gal that can't sit still...he he! Oh and the xmas thing...it's called "vicodin". All I can say is that I had to see my mother in law (aka monster in law) on xmas eve so having surgery and getting vicodin was a blessing so I could be doped up and not worry about her BS! Speaking of which...she is coming over for a visit tomorrow...blech! At least she now knows I have BC (don't think she really cares at all....but that's another story) so maybe I can play the "I'm tired" cancer card and go upstairs and hang out here on the computer (in the lounge with you fun gals!). That would be more fun than pretending to want to hang out with my mother in law who can't stand me.....Oh and the comment about your dog growling at your wig...hilarious! I have vivid memories of my childhood dog (a 70 lb white samoyed) running around the house with my mom's brunette wig in his mouth and us chasing him (it was the 70's when I grew up and my mom liked to just wear wigs for fun - or lazyness..she had 3 kids and was a single parent). We use to laugh when the dog took it and ran around the house and my poor mom would get so mad. Once he actually made it out the back door into the yard with it! Too funny...you just made me crack up at that memory I haven't thought of in years!
Lilylady: I am sure the stress of the scans is horrible. I am sorry....I have the opposite problem - my doc's won't scan anything because I am stage 1. I had angiolymphatic invasion on my path report so I keep thinking there is stuff all over my body and no one will ever know. I worry about it and wish they would scan me so I could at least know. I will push again with my doc, but so far from what I read they don't scan stage I. Hang in there...keep us posted. I also like the fact that i have scitzo meds (compazine) at my disposal....lol! Who knew!!
All I can say is the lounge is so busy but then again it's Saturday! Party on!
I am so excited...my hubby and I have a sitter tonight so we have a date night with friends. The only bad part...no drinking for me. I keep telling everyone that I gave up drinking for lent...it's an easy cover since not everyone knows I have BC. At least Easter is late this year and my last chemo is the first week of May so it works for the most part....I guess I should now go to confession for lying hu? Have a good Sat night gals!
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Maria - I love the "gave up drinking for Lent" thing, I'm going to use that too. So glad you and DH are out for date night, that is awesome!
I am day 2 from chemo #1 and feel like doing NOTHING. Not even lying around. I am a little cranky because it is so pretty outside and I don't even feel like being out there. I went out with the dogs then got warm and nauseaus and came back in the house. At least I slept well last night.
Also, I keep feeling like I am letting everyone down because there aren't more post-chemo dramatic SE's. I just feel bleh...Everyone is calling to see how I am, DH is coddling me like a baby bird, and I just want to lie around and be still. I am wondering when I will start feeling better and impatient to get there!
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Hi Everyone-
Lilylady - I am thinking of you today. I hope you are able to do something that helps to relieve the stress of those scans.
Just a couple of questions for everyone. What are you drinking water out of on the go if plastic bottles are bad and aluminum bottles taste funny? Can't really take my drinking glass with me. Also, what deodorant is everyone using? I bought the crystal stick one that is aluminum free but it doesn't work well here in the Southeast. It was already 85 degrees here yesterday and I was stinky! Also, what's the thinking on toe nail polish? My feet are looking pretty sad after winter and I wasn't sure if pedicures and toe nail paint is ok. I wasn't sure if the onc needs to see the nails or not.
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Hi Lililady, how are you doing today? glad to hear you bought a big tv. What's your favorite show? That is funny that the compazine is also an anti schizophrenic pill lol.
Hi Husker, how goes your day? Thanks for the info.
Maria, how are you feeing after your second treatment. I love the, gonna use the cancer card to go upstairs. What ever works right? Who can question it.
I was happy I ate an entire omelet this morning and now I'm enjoying a cold glass of prune juice lol
supersally, glad to hear you're doing good still.
hugs to you all,
min
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Min: LOL! I didn't know you could order "prune juice" in the lounge! LOL! I think you should put it in a martini glass just for fun! I have treatment 2 on wednesday next week....stay tuned!
Colodisneylover: I am painting fingers and toes...no one said not to so whatever. For now it is one "normal" thing about my body (assuming taxotere doesn't make the nails fall off.....waiting to see if that happens too!). As far as water...I gave up plastic bottles unless I am desperate. I bought two large stainless steal water bottles and keep them ready to go to the gym and I fill it for being on the road all day running errands. I haven't noticed anything tasting strange. For deodorant, I choose Bubble and Bee (I ordered online) as it is all chemical free and aluminum free. My sister has always been an organic/natural girl and she assured me she has tried just about every natural deodorant offered at Whole Foods with no luck. I read good reviews on the Bubble and Bee so I ordered us each a stick of "Pitt Putty" (yes it is really called that). So far it is working pretty good for me. I do find that if I sleep with long sleve PJ's on at night I wake up a bit stinky because I am having night sweats from the chemo. I started sleeping in a tank top and no stink. It was a bit expensive, but then again all natural products seem to be but then there is shipping too. You don't use much so I would think it should last for a long time. CHeck out their website. http://www.bubbleandbee.com/
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I've also started with some night sweats. And lilylady, I laughed out loud because my dp and I just went out yesterday for a new 40" tv. We figured we were going to be stuck at home for a while (6 mos of chemo followed by surgery), we deserved a bigger tv...
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Ladies - don't forget to sign up for some good, old fashioned BRAVO tv. I have said it before, the housewives were good company duing chemo....
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I love watching the real housewives on bravo, but can't really get into the miami one.
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Hi ladies,
I am on my phone and can't really remember who said what, since I can't see the screen when I type
Lily, I hope you are feeling better:)
Min, you are a super woman, I just walked for a mile and I'm tired lol
I went for my neulasta shot today and it's not bad, so far. It burns a bit but no discernable aches or pain yet. While I was there they gave me an iv, which caused me to take an hour nap lol. I was disoriented and groggy waking up lol
At my first infusion yesterday I took the Emend and decadron before infusion and also got steroids in the iv. I was told to take emend and decadron for two days, with zofran and ativan as needed. The doc told me the decadron was mostly to up my appetite since I am slightly underweight. I had AC.
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My doctor also will not order any scans for me and my path report had extensive angiolymphatic invasion. I find myself having mini panic attacks when i feel a pain anywhere, the panic attacks also cause shortness of breath which then makes me feel that it's in my lungs.The madness never ends!!! There seems to be stress either way by having scans or by not having scans.
Jeremiah 29:11 "For I know the plans I have for you," declares the Lord, " plans to prosper you and not harm you, plans to give you hope and a future,
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Day 5 post chemo and still feeling great-even did a cartwheel while goofing off earlier!!! I keep waiting for the other shoe to drop but the worst part for me has been just stomach cramps. I am also eating like a pig. My DH on the other hand, is sick as a dog with a sinus infection. He thinks I got a placebo and somehow he got my chemo-lol!! Hope this lasts but the way my luck is- I'm just waiting for the bad!!!
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Hi all, just popping in for a bit...two words....chemo crash...yep it got me had to add gravol to the zofran and my arms and legs feel like they have lead in them. Oh well hopefully tomorrow is a better day. Talk to you all later
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Hey Kymn,
just wanted to post that post 27 1/2 hours after chemo, i'm beginning to feel nauseous. Just took a compazine. I did take an 80 mg of emend this morning too.
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kriskat-thanks for another reason to get chemo_I can't wait to be able to do a cartwheel. Maybe that's what I will do for the neighborhood Easter Talent show. Better keep that on the downlow though-the AC girls will be jealous of our TCH special powers.
Spring cleaning the bedroom today since i might be spending more time there-pulled out a dust bunny that scared my german shepherd! Not sure why since it was mostly made up of her hair. Wish I could chemo her... German shepherds have to rank up there as worlds biggest hairbags!! Love the pets but the hair is endless.
I was reading the paper they sent me for Pet Scan prep. No sugar the day before and 1 hour prior to the test no reading, talking and try not to think or stress. Brain neutral they call it-HUH-I have been working with people like that for years. Apparently your brain lights up with activity so they want only the cancer cells munching on the glucose to glow.
Min-haven't got to watch anything since they set it up-brothers here so all that's been on is roaring cars and squeaky tennis shoes. Since I have been off for a month I swear if I have to see 1 more Law and Order rerun. I am a HGTV and Food Network-it is amazing to see them so large. When they go home I am going to find me something funny and plop on the couch.
Going to eat some of my favorite food tonight since my tastebuds might change. I have asparagus on the grill right now and some lovely porkchops right next to them. Made a coconut cream pie earlier. Doing a huge meal for the entire family tomorrow then hanging my chefs hat up for the next week. Port Monday, Pet Tues, chemo Weds, Muga and scan results Thurs, BFFs coming over Fri and Sat to commiserate and help with the spring cleaning. They are my high school buddies-we graduated 35 years ago and they are still best friends in the world. we had to cancel our annual Vac because of the FBC so we will really whoop it up next year.
Kym =sorry about the crash, you were doing so good. Hope you get back to us real soon.
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Kymm-hope u feel better soon! This is no fun for any of us!
Lily-will be thinking of u next week. TCH-u can do it!!!!0 -
Lilylady,
I'm so sorry you are having to do the wait and see. I think this is all so routine for the doctors they forget every single day of not knowing things is torture for us. I hate that there are somethings they tell us and seems like there's stuff they hold back (they didn't tell me I was her2+ till after my surgery even though they'd found it out on my original biopsy). But I wouldn't read too much into them moving the PET...sounds as much like an insurance thing.
Thank got the scans can tell us so much and see so many things early. But it also can fuel lots of panic. When I had my ct/pet combo, it showed a spot on my neck on the opposite side of my affected breast. My onc told me it could be a spread of the breast cancer and I might be metastatic...then sent my on my way home. Complete shock...I don't know how I got home. Had to wait over a week for them to get me into get a guided biopsy under my collarbone. Then another 5 days for results. Just so awful. People had to come stay with me. My mom came up form North Carolina.
When I went in for the results, I burst into tears when my onc came in. He told me "this sounds bad but it's really good...you have thyroid cancer." So it was a v early thyroid cancer the scan picked up not breast cancer that had spread. Freaked my out that I have 2 kindsa cancers (and no cancer in my family at all) but they aren't really that concerned about the thyroid...aren't even going to deal with it till after my chemo.
The whole process was torture, but after that, I have to say what I'm going through now is all best case scenario...it makes it easier I think.
But if things do get confusing, I would find the doctor I trust the most (I'm in NYC and doing NYU...but when I thought it might be worse, I was totally going to do whatever possible to get into Memorial Sloane Kettering (but I do love and totally trust NYU). Just whatever you need to do to know you're doing the best thing (and all you can do)...might be worth a trip to Cleveland Clinic if possible. (I'm orignally from Ohio and would go there in a second if it was closer).
Ok for a bit of fun, have am posting my before, buzzy (my friends shaved my hair last night) and after with wig shots.
Before: http://www.flickr.com/photos/35071465@N00/5541918190/
Buzzzzzz: http://www.flickr.com/photos/35071465@N00/5541918356/
Getting wiggy: http://www.flickr.com/photos/35071465@N00/5541346501/
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Oh and anyone else gettting horrible circles under their eyes during chemo? All and all, I'm tolerating it really well (fingers crossed on day 2 after round 2), no neulasta pain and no puke yet.
But these circles make me look sooo tired. I always have pretty dark circles but concealer usually does the trick. These just seem to be uncoverable. I use Laura Mercier which is like spackle, but there must be some bigger guns to deal with these suckers.
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Kymn, I feel your pain. I was so achy today (Neulasta yesterday), and it just got worse and worse. Had a temp for awhile of almost 100, but that didn't last. No nausea, but no energy and just hurt all over. Hopefully a good night's sleep (w/Ambien) will kick it so I'm not so draggy tomorrow!
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To everyone who's just done round 1, I hope you're feeling better tonight and resting.
Bikenyc: So sorry to hear about your thyroid. I had the same kind of experience when they did all those scans looking for mets. No mets found but I learned I have a benign brain tumor, called a meningioma. Neurologist said they grow very slowly, probably had it a long time. Mine causes no symptoms so the docs are in no hurry to do anything to it. After I finish chemo, there will be another CAT scan and maybe docs will zap it with rads to stunt its growth. So, yeah a few months ago I was a healthy (never got sick), fit, busy mother of two little girls & running my own business. Suddenly I heard "you have cancer" and "you have a brain tumor" and felt like my expiration date had come due. Now, I think it will make a great story one day when I'm an old lady. I hope so. What I mean to say is you're right to trust your top-notch docs; they can do amazing things. We'll both -- hell, we'll ALL -- have great tales to tell about this when we're elderly survivors.
On hair post first chemo: 8 days ago I got my shorty-short pixie cut. Then today, just as I'm learning to love the new look, strands are falling. I knew this was coming but somehow I still pick up hairs and look at them in disbelief. I keep looking at myself and wondering what I'll look like next Friday, the day after TC round 2. I never bought a wig and wonder if I should.
This whole thing - the cancer, the brain thing, the chemo, the SEs and the hair - gets to me at times. I get sad. I get angry. And I don't know what to do with those emotions. But I feel better when I come here because you guys can offer me something that even those who love me in real life cannot - real understanding, and that means a lot.
Appreciative of all of you tonight. I know I'm not alone in crying over fallen hair and dreading chemo on Thursday.
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bikenyc-thanks for the PET encoragement. After the bone scan they came in and asked me everywhere I thought I should light up-when I listed my bad spots she told me that matched with what they saw and they took it to the radiologist who said no further x-rays needed. The CT covered me head to toe so thinking that must be where they saw something that "indicates further evidence of disease". That is insurance speak for we ain't paying for that dang expensive test unless we absolutely have to. MDG-that is why you aren't getting scans. Cheap onsurance rat basta....Got towatch that factory mouth of mine lestyou guys think I am not a lady
I have thought about the Cleveland Clinic but I decided I didn't need the best in the world-just good enough to fix my problem. I do have a nationally ranked surgeon-she is why I picked the program I am in.. Once they told me the tumour was embedded in my chest wall I wanted someone who knew which end of the scalpel to use. She is only 5' tall. Either they lower the table to the floor and everybody else stoops or she has a little step stool when she operates. The day I met her she told me I had the exact same color hair as her son-wonder if his comes out of a box also? He is only 9 she said so I doubt if he is into L'Oreal yet.
Husk-I was going to ask why you are still up but I think it is a diffeernt time where you are at.. Hopefully that's it and not the Ambien not working. Hoping you and Kym can have a better Sunday.
I may have to start blogging somewhere-my fingers seem to run away with me late at night-don't want to wear out my welcome. Goodnight all who are still up-wanted to see the special moon but it is so cloudy out all I am getting is a glow. Just checked my free yard sale out front. Only thing remaining is a beat up coffe table that I use to paint really bad paintings on.maybe that's why it s still there. it is giving off bad karma. Am purging still. Uncontrollable urge to get rid of all excess...
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Just a side note - I had a Nuclear Medicine specialist who definitely belonged with this forum.
I had the bone scan the day after the MX and was pretty much a mess. He told me straight away it was clear - did not just report back to my surgeon.
When he came over and said - "its fine there are nobone Mets" I just burst into tears. His response was "I think you need a nice Pinot Noir" - I said DefnitelyHow response was - no I am serious, and then and there bought me a glass of sparkling Pinot Noir which I proceeded to drink sat in my wheelchair they were transporting me in.
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Hi Ladies,
I'm just joining the chemo lounge right now. I'm on day four of my first TC treatment and am wondering when I will start to feel better? No nausea, just bad fatigue, chemo brain and sore throat, achy bones, thick feeling tongue, etc.
Afternoons seem to be better for me than mornings (could be due to Ambien, Ativan) Is this common? I'm hoping to go back to work tomorrow which should be interesting....
Any support is appreciated
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Penny, what a sweet guy!! Isn't it those little things that are so meaningful to us?
Lily, I am a bit of a night owl but that is quickly changing with chemo hangovers! I am in CST in Nebraska. On computer @ 11:00-11:30ish is typical for me but my body is starting to protest lately.
I did sleep until 8:00 and am still pretty achy. Started w/ Tylenol and hoping I can manage w/o hydrocodone. Plugs me up! Thinking a bath might help? Heat packs aren't quite cutting it either since I need more than one.0 -
Kriskat: I am jealous you did a kartwheel 5 days post chemo...I had bone pain at that time! Good for you! You are giving me hope for the next round this coming week! You rock!
Min and Kymn: Sorry you finally got the "hangover"......I hope it passes quickly. I wish it was as easy to cure as a regular hangover, you know some really bad for you food like burrito, pizza or greasy burger. Hang in there girls......drink those fluids!
BikeNYC: On the thyroid cancer...my mom had it when I was 11 and it was caught early. I am 45 and she has been cancer free since. She goes for follow ups every few years with nuclear medicine and all has been fine. I just want to let you know...it's very treatable! Really! Hugs! As far as the dark circles...I got them too. I am Italian and have always had them. I am using Aveda concealer and it works well for me. I switched to all naturl makeup to go completely chemical free. When I wake up in the am with no make up though.....ick! It's ugly!
Husker:; I was going to PM you. I have been wondering about your girl! SOrry the bone pain hit. Mine lasted about a day. The next morning I woke up feeling great. I hope you feel better in the morning!
Michelle67: I want to hug you right now. You are right, coming here has brought some calm to my oh so crazy cancer world. I could not get through this without all of you!! I too feel all of those things....but for me the exercising keeps my stress level down. Has anyone read the AntiCancer: A New Way Of Life book? It talks so much about stress playing a role in this..I have vowed to deplete my life of as much stress as possible. It's not worth it....it's a great read. Written by a physician that had a brain tumor. Full of research, healthy eating and lifestyle changes to help beat cancer....check it out if you haven't. The best book I have read so far.
Lilylady: I have turned to blogging during this and it has been fun. Don't know who reads it or if it matters, but it makes me feel better to get it all out.
Pennycookson: Invite that doc to the lounge! Wow! Can't even imagine! And here I thought I was getting good care when I burst into tears after my xrays from the sentinal node injection the night before my surgery and got a hug from the xray tech and then he walked me all the way out down the hall to the elevator. Dang...I wished someone would have offered me a cocktail! That would never happen in the US. Never! I bet that was the best glass of wine - ever!
Cathyjoan: Welcome to the lounge! Glad you found us but sorry you needed to. I did TC and my worst days were days 3-6 post chemo. On day 7 I woke up feeling like a new woman! Hang in there...it's is hard but we will get through together! These ladies here are the best...hang with us and you will feel better and be surrounded by tons of "cyber hugs"! Everyone - say "HI" to Cathyjoan - just just found the lounge!!!
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Good morning loungettes,
Well its now day 3 or 4 if you count chemo day, woke up nausea's again but adding the graval to the zofran has really helped. I agree with you Cathyjoan the fatigue is just so frustrating, even the idea of getting into the shower seems daunting right now. Its nice to meet you , you will get great support and understanding here.You can rant, laugh, cry or even just be silent when you need to be and we will always get it.
MDG thank you for being so great at keeping up with all the ladies here, your very welcoming. I read through the threads and then when it gets to typing I forget everything I wanted to say...better get a note book I think so I can share all my thoughs with all you ladies. I do think of all of you and thank you all for your comments and help.
Husk I too used to be a night owl well at least on the weekends it wouldnt be unusual to find DH and I up at 3 listening to music, having a cocktail and laughing and talking lol but now I am in bed at 9 could be at 7 but force myself to stay up some. Then I sleep for about 14 hours and darn it I wake up tired. Hopeing this is the last tough day and I start feeling better tomorrow.
Michelle I so feel what you are going through, I cut my long hair two days ago just to my shoulders but was a big step for me and now I find myself likeing the change, my niece is coming over today to give me short hair cut but I am afraid I will just start getting attached to that and the strands will start coming too so I think I am just going to have it buzzed today, really whats 6 or 7 more days with hair. I am having great anxiety over loosing it so I should just get it over and done with so I can start accepting it otherwise I will fret all week till it starts and I just cant keep doing that it makes me cry every single time I think about it
Lily lady sorry about your insurance frustrations its so hard when the system treats you like a number
Penny I think those aussie docs should teach our canadian and american docs a few things about calming us down lol. I have been to australia and just loved it there. such a friendly group just like us canadians lol .
bikeny if you find that micacle conceller please let us know I am constantly on the look out for the perfect one.
To everyone I missed sorry but my brain is now shutting down time to rest again I mean jeepers I have been up a whole hour and a half you know lol
hugs to all
Kymn
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Hello all,
Sounds like it has been a tough few days for many of us here. I am feeling better today at post-chemo day 3. I got another good night's rest. Yesterday, it took all my focus to just take a shower. Today, I am moving around the house with more energy and getting some tasks done. Food still not sounding good, but at least I'm not nauseaus. I haven't taken any anti-naus meds since yesterday am. I didn't have a Neulasta shot this time, so maybe that is a big difference for me from some of you all here. I have a pretty bad headache, has anyone else had that?
I am going back to work tomorrow for the first time since my BMX. It should be interesting to see how I can manage the boss's expectations. He is a workaholic, so that could be quite a task. I'm not looking forward to it.
Going to try and enjoy the pretty spring weather we have again today. A walk for Maria with my dogs at least
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Day 11 here - no SE's at this point but sore mouth and throat, and heartburn! My appetite is back with a vengeance, and even though I've got a bit of metal mouth, it doesn't alter the food taste much anymore. No hair loss yet, anywhere, but I've put away all of my clips and scrunchies, and put out baskets with caps and scarves on the ready.
I even did gardening today; raking the hay mulch off of the gardens in back. It was so nice to see shoots coming up from bulbs and all the new growth, and the sunshine felt wonderful. Best therapy in the world!
For those of you crawling through days 3,4 and 5: it should get better soon. I think I started to rejoin the world slowly on day 6 and each day after that got better and better.
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I am day #4 since first chemo trmt on Thu. Finally feeling a little better this afternoon. Took a lonnnggg soak my oversized tub with jets (finally getting some use out of the thing after all these years!) and that helped a lot. I was afraid I wasn't going to get out without help, I was soo noodle-legged. But I managed. Waiting for the gastric area to decide what it's going to do. Some rumbling but no action. I did manage a walk around the block, but was afraid of going too much further. It is 63 degrees but so gray. However, the fresh air and movement seemed to have helped! Am hoping I am able to work Monday; it may be a short day if I still feel like this. I know it wears off at day 5-6, just hadn't really thought out the work thing. THinking I should work the day after and then not day 3-4, or maybe 4-5. So hard to know ahead of time isn't it?
Kymn, thinking of you. I went short a week ago but my hair has always been just above the shoulder. Still a dramatic change. Plus I'm usually more blonde than I am now. Salon owner is calling Tuesday with quotes on two wigs I looked at Friday, Racquel Welch and Gabor line. Now if I looked like Raquel Welch I might be more excited. Wish there was a way to transpose my face into the wigs and really see what it will look like. Am just hoping it will arrive before the hair starts going. I have scarves at the ready, but really want hair! My hair! Hope you all have a nice nap; that is where I am heading now. This typing is exhausting!
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Supersally - glad to hear you're feeling a bit better. I have also had the headache. I finally called the onc. about it b/c Tylenol was useless. She said I could use Tylenol #3 (w/codeine) to break it, but not while working or driving. Since I'm on AC with a neulasta shot, I'm not allowed ibuprofen type drugs - frustrating, as they usually help my headaches. I find the headaches are worse when I'm still - particularly when lying down. I wonder why...
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Just got a call from NursePrac from the surgeons office. Looks like they found a large thing? in my liver and some other things in my lungs from the CT scan. She said it wasn't unusual in the Ohio Valley to find lung stuff-histoplasmosis runs rampant in these parts. My mom lost a lung to this 3 years ago. The liver thing? She said is just as likely to be B9 as malignant but that is what has warranted the additonal tests. I asked her about nodes-because I haven't had surgery all we know is they don't feel "matted" on palpation. The report says no evidence of axillary node something something...I will get a copy of the report this week.
She also said I will now be getting a power port since I will be having more of these test thruout the process. Knowing is better than guessing-and also better knwing at home instead of tomorrow with family people standing there. At least it isn't my brain...
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