March 2011 chemo-lounge
Comments
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mdg - LOVE the idea of Pandora! I've been eyeing those for a while. What a great excuse to finally get some. I'd need 6 for the TCH and then how many for the 6mos worth of Herceptin? Do they do necklaces?
I had the steroid rush yesterday too and got lots done. It makes me feel less guilty in case I ending up doing absolutely nothing next week. On top of a workout, some volunteer work, and other odds and ends, I went for my neulasta shot, but did it myself with the nurse offering comments. I now know I can do it myself and save an hour in the car. Also, I hear 'ya about thee old lady obsession with poop. What does it look like today?!
re: adangel's lucky list (her idea, not mine!): reading other people's lucky lists make me cry, but they're also inspirational because they remind me of the good things I have to be grateful for. Don't be afraid that it makes you teary to think about what's good in your life despite all the cr@p. They're different, maybe even cleansing, tears than those you cry over the negative "my life sucks" thoughts.
This forum has become pretty important to me. Someone suggested a local support group to me and I may check it out. But this is more than a one-per-week chat session. I love the honesty and openess you all bring to the table. This is hard sh*t we're going through and it helps so much to have people who really understand what's going on and understand the strength of character that's required to get through. Other people are trying to be sympathetic, but some really just feel sorry for us. They're mainly glad it's not them. There is so much valuable information being shared here. I'm an information professional and I love being able to share what I'm learning if it could help someone else. I also love all of the little hints and tips being shared that might be useful to me. I'm learning a lot from all of you. I'm getting teary so I should probably add this to my lucky list0 -
Congrats to all of you who are one dose closer to finish, and also to you who are half way through, as am I. I had my 3rd on Tues., Neulasta on Wed. I was a bit down yesterday, but still managed to get up and walk for a half hour and plan to this morning although I'm a bit achy.
I also like the Anti-Cancer book and have read it cover to cover. I plan to reread it often to refresh my memory.
I saw the NP before my last chemo and she put me on antibiotics for my folliculitus, even though it is all but well. I think she was afraid this treatment might cause it to flair a little.
Also, I had miscalculated my treatments and the date of the horse back riding trip I wanted to take. Turns out that the trip is right after my next treatment, not right before. No way I can get on my horse and ride 5 hours a day right after chemo. She suggested that my onco might move my chemo so I could go, but she checked with him and he said no way. He said I am doing too well to mess with the schedule if we don't have to. I'm thinking I may just go anyway and hang out in the camper while my husband and the rest of my crowd ride. I think it would be good for both of us to socialize a bit.
Counting my blessings each day, although I haven't written them down yet. At the top of my list is my wonderful husband . He is so attentive and caring.
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Quick update: I mentioned the Pandora idea to my DH and now he's a bit peeved. He already had this idea and was looking for Pandora on his last biz trip. But he says we will DO IT. This excites me. It will be something positive to mark the end of another chemo session. It's even better than anticipating my chance to ring the bell at the cancer centre. Thanks mdg!
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I am a nurse that was taking care of children in their homes that have life threatening illnesses, some in wheelchairs, some living attached to ventilators etc. I thank God every day that I have lived a very well 52 years before having to deal with any illnesses. These children have taught me how to live positively and not ask "why me" Kids never complain. So when I fell sorry for myself I think of the kids who never asked to be sick at such an early age. I still work with kids (teenagers with psych issues) and hope to for many years coming as they are an inspiration to me, they are resiliant.
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Adangel: Listening to "mia regazza" (My girl - in Italiano - I had to do that since Peroni is Italian!). Simply "bellisimo!" (beautiful). It has made my morning. I love the singer...great voice! Thanks for giving me a "tiramisu" (pick me up in Italian) this morning!! What other Italian words can I throw your way today? Buongiorno tutti (good morning everyone!)! I hope the buzz goes ok. I have no advice...just a BIG cyber hug and a free drink of your choice....I will make it something strong!
CharlottesMama: Now that I enlightened you on Pandora you have started my day with warm, hungry thoughts of flourless chocolate cake! Girl...I wish you could come up with a low sugar, whole grain recipe for that! OMG...now I want chocolate and it is only 8:30am! Bad bad......If I put that with Adangel's beer commercial I am really in trouble!!! Ha ha! Talk about a hangover...beer and chocolate!
Pasmith: Yes they have necklaces and bracelets that have charms. The are so adorable and you will love them. I only have the rings but I have lots of friends that have the bracelets and necklaces. Go online and look. If you stop by a Pandora store or jewelry store that sells it you can pick up a book to keep that has all of the stuff in it so you can circle what you want and give it to your hubby. You can also make an online wish list on the Pandora website you can share with your hubby. You deserve something beautiful after all of this! I refused to get anything "pink" though...just can't do it...blech! Oh and on the poop front (since you asked and I am obsessed), yesterday was good. I just realized this morning that I forgot to take stool softeners last night...nothing this morning. That is scary for me. I took another senakot this morning and will exercise and chug water this morning and see if miracles happen. Thanks so much for asking about my poop! I am glad someone cares! I wish the steroid rush would last...I felt great yesterday! Oh and yes, Pandora is WAY better than ringing a stupid chemo bell!!!!
Jules: So glad you were able to get that walk in...it makes me feel better when I feel bad. I swear! I got neulasta yesterday and am hoping the claritin and aleve do the trick again this round. I am glad he folliculitis is better. That is a huge bummer about your riding trip and chemo schedule! So will you cancel the ride? Can you reschedule the ride a week later? Try not to give up....if you do have to cancel then plan something else fun instead!!!! You deserve something to look forward to!
As Pasmith said, I too am so greatful for finding this board and having all of you. I had planned to join a local support group but they seem to be once a month. I need you guys everyday and sometimes more than once a day and you are always here for me. I feel so bonded with all of you and have such respect, admiration and amazement for each and every one of you. I could not do this without all of you honestly. I never in my life imagined making such meaningful relationships over the internet. I am also greatful for my hubby and son. They keep me going and happy. I have such joy when I look in my family's faces. I am blessed to have wonderful friends...a different friend has joined me for each chemo and my best friend is coming from Ohio for my last session so we can do it together. The one thing I have found that has been a blessing in this whole thing is the fact that people often don't really tell the people they love how they REALLY feel. Through BC my friends and family have been so open about their love and feelings for me. have heard things I would have never heard come out of their mouths about how much they care about me and how much I mean to them. Some people never get that in their lifetime. I cherish those words and cherish that I have told them how I feel about them too. That is a blessing.
OK - gotta go..going to cry now!!!! Have a hangover free FAB day my dear friends!!!!
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Hi everyone
I just discovered this website on Monday and have been trying to catch up on all the posts.
I started chemo on March 17th. Yesterday was my 3rd A/C. One more in 2 weeks and then 4 T, followed by surgery and radiation.
I am still working through all this and so far, I've been able to manage all the side effects. Haven't read through all the posts yet, but is anyone having constantly runny noses, starting about a week after treatment? It happened after both treatments. Plus the bottom of my feet are sore. Apparently, doc says this is something to monitor...anyone else?
Before chemo, have to admit I was quite the lush; wine every night with dinner and drinks with friends on the week-end. Now I've lost all taste for it. Have had alcohol 3 times in 4 weeks and I'm ok with that. But summer's coming and I want my cocktail to be a yummy blender drink that I'm really going to miss. Cheers to all!
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Just wanted to add that I wish I'd found this site back in February when I was diagnosed. It has been a huge roller-coaster of emotions...I don't think I've ever cried so much.The hair loss (with all the itchiness and discomfort), chemo-pause, chemo-brain, 3 teenagers, and trying to keep working (I work 7/8 days in 2 weeks) have completely overwhelmed me. The only 2 people I knew with breast cancer both died. So I've had no one to talk to. It's so nice to come hear and read about people who are going through the same things at the same time!!
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You'd think I still have a steroid buzz today, but I'm done with them. I have so many things running through my mind.
Does anyone else follow Amy Kalisher's blog? If you don't she's very interesting. Her blog is at: http://www.babiesornot.blogspot.com/
She has been blogging and then started vlogging (videos) her experience with breast cancer. She's currently just past the halfway point of her chemo treatments. She's no-holds-barred and shows her bad days and her good days. She shares her worries and her apprehensions. I've found her to be quite inspirational because she is able to swim all the time and do 30-40 mile bike rides. She is living her life and has such a great attitude.
Just thought I'd share in case it is of interest to anyone else.0 -
Grazie mdg grazie!!! I am so glad you liked it and I agree, the Italian version is amazing. I don't know if the video has been uploaded yet, but will forward the link when it has. The images of the lido - which we totally renovated - on Lake Como are beautiful. This commercial ruled my life for months prior to my diagnosis, which unfortunately kept me from going on the shoot in Bellagio and the recording in Roma. Luckily I got to hang out with Mario Biondi (the singer) last night, in my glam wig. Something else to be thankful for. As for my drink, I think I'll have a Peroni! Ciao bella!!!
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Thanks for all your support re the rash. My face was so swollen, dard red and I had what looked like hundreds of large whiteheads/pustules - could not bear look at myself and thought of coverng all mirrors. Started taking the antibiotics and applying the ointment on Monday and by yesterday was able to somewhat cover it with makeup. Went out to dinner with friends who do not know about my BC. Wore wig for the first time and was very self conscious but nobody noticed! Today my face is so much better. It is hard to believe the change over a few days and I am still not sure whether it is in fact the antibiotics or just running its course because last month, even though it was not as severe as this time around, it cleared within the same time period. My 3rd TCH is next Wednedday so this round I only get 6 days of somewhat feeling normal, although I am still very tired and wondering if that is from the weekily Herceptin.
Mjd - I agree - feel the wine would be like adding poison into the mix right now even though wine is a big part of my life here in Northern California. The Anti Cancer author says to limit to 2 glasses a day which seems very liberal! Also have not been able to drink coffee and have changing aversions to many foods - feel like I am pregnant (if only!).
Hope every has a good weekend.
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Good Morning Ladies,
Welcom Suebee48, so glad you found us, I feel so sad for you that you had to go through that intial diagnosis and beginning treatment without us, I dont know what I would have done withouth the love and support from these amazing women. Any question I have ever had has been answereed by someone, any SE someone had it and could walk me through it, any emotion I have felt someone else was having it and assuring me I was normal. You are one of us, one of our sisters and glad you are home. I too only new 2 people with BC and both had passed away it sure was scary, I cant beleive how far I have come in such a short period of time.
I wish I could address everyone right now but am at work so have to run
Big Hugs to all
Kymn
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Suebee48
So glad you found us, this site provides amazing support. I don't want to talk about this stuff to friends and family so its great to be able to let it all out here. I have had a running nose since the end of chemo1 and now also have running eyes. I don't think there is much we can do apart from use very soft tissues! I usually go barefoot araound the house but have been wearing wool socks all the time to stop sore feet (but hot when its 35 dec C)Guys - I mentioned the nail infection last time - my onc says I shuold get antibiotics straight away if it comes back.
Saw her yesterday and now I am really confused. The BS said it would be fine to leave the non functional port in till my left MX and reconstruction, she says it is a clot risk and cannot even stay in till end of chemo - so it looks like another op.
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Quick check-in. Finished chemo #3 today and it was uneventful, but long 9:30-3:30. My dear dad (age 73) took me this morning and we had a good chat. He's been worried about me. Then he left and husband came to finish out the day. I got in an hour nap in the chair-a miracle!
Will have Neulasta shot tomorrow and got the doctor to agree to a half dose since my WBC's have been high. 27 last week and 12 today. At first he wouldn't consider it since I am part of a trial but it allows for Dr. discretion. Just not able to do away with it totally. then he got excited and called the onc pharmacist and wants to do research on others that have had half doses (it only comes in one size, so typically it is all or nothing). He may write a paper. Told him I'd better get credit as being the inspiration. He calls me his "fragile patient" because I cried so much the first appointment and then have asked so many questions. Hardly fragile but I liked him better today and my father was impressed, and he's a pretty good judge of character. Am hoping a half-dose will help reduce the SE's, even though I also have done the Claritan and Aleve. And extra steroids. he even reduced those those to 3 days after (and not until Sunday) instead of six.
I too add charms to a Pandora bracelet I already have. The first was a four leaf clover since I started on St Patrick's Day, the second treatment I added the letter "K", for my own name-Kristy and my sister who accompanied me-Koreen. Today I added a money bag with a $ sign since it is tax day here in the US (although they extended it until April 18). Seemed fitting with all the dollars this darn disease incurs. Even though I have great insurance there are alot of out-of-pocket expense, especially the retail therapy! Next time I will add a wedding bell with pearl clapper that will be in honor of my daughter who got married on my 50th birthday last Sept. Thank god I was not diagnosed until Jan. I was able to enjoy a great day and had really good looking hair! That is the picture I have on FB; should try to download it here if I can remember how. So hoping for a good day tomorrow riding the tails of steroids from today. Hubby and son are going to college spring game so house is mine. TV is mine. Magazines are mine. Couch is mine. May even do some cleaning. Ha ha ha! Could happen.
Chrissy, glad the skin is clearing up so quickly.Penny, sorry to hear about another surgery likely. Seems like having it out would make sense, then there is no worry. But hate when they tell us two different things. Welcome, Suebee, this is the best forum on the site (next to the one about drinking-very funny ladies over there too)
Gonna try to get to bed early for a change...figure steroid buzz will have me up by 5 or 6 anyway.
Should have time to catch up tomorrow. TTFN (ta ta for now!) Kristy
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Hi lasies. Wanted to pop in . If in doubt the onc, is not giving you comfort meds, call. They srt me up with a self referrel for me 3 hours away next Fri. can;t wait to see the results I may get treated. Heck I had to beg for small amount of nerve and pain meds. I have suffered. I start taxol and herceptin Mon, meet with plastic surgeon thurs. Ive decide double mesectomy. With her pos, it brings odds down 97%. My breast surgeon since iM A B told me if I wanna go A c do it. Im gonna why not I have or can take 2 years for second surgery with insurance paying. Have been washing all walls and porch 2 days. Sunday Dh gonna help me shampoo carpets get summer clothes out. Just to be on safe side since i go for taxol every week for four. I have responded so well cant feel lumps now. I was due to get 6 adramyican but only got four. Losr appetite rounf four but nausea not alot, neve pillls I got helped me eat some more. only lost like 3 lbs. Okay girls take care.0
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Thanks for all the welcome wishes! First time I've felt at home since I was diagnosed.
Day 3 after 3rd A/C (I'm a St Patrick's Day girl, too). Stiil riding the steroid high. I went out and bought Claritan for the Neulasta pain but not sure when I was supposed to start it...or for how long..or when to take the Aleve.
Kymn-Thanks for the kind words. I've noticed that you too have had communication issues with your DH. I feel like he doesn't want to listen and is wrapped up in his own life. I'm lucky if I get 10 minutes a day of conversation from him. Add 3 self-involved teenagers to the mix..and I truly feel alone. It's a miracle when I pass a day without crying. And people wonder why I go to work! Get lots of love and support there, that's why! although, it truly takes a toll on me.
Penny_ Glad to know that someone else has this annoying runny nose. Onco said it's not a known SE. And good advice about the socks, too. I am always usually barefoot, so I'll make an effort to put some socks on
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Good morning ladies! It has been raining hard this morning here...it's not going to make the neighborhood Easter egg hunt any fun today...oh well. I am so glad I slept last night...the steroids kept me up Thursday night late so I feel more rested today. I am also happy to report that stool softeners and senokot are doing their job.....I am sure you can relate to the poop obsession in the days following chemo. So far so good on this round....just a little tenderness in the neck area and some indigestion (I seem to belch so much in the days following chemo....don't know what's up with that). I have been curbing my appetite...I stayed away from the kitchen yesterday so I would not just eat all day like the last round of chemo (I get so hungry the few days after chemo).
SueBee48: Welcome to the lounge!! SO glad you found us. YOu have found the best place to hang out around here...great ladies! Hugs! Pull up a bar stool...what are you having to drink?? As far as the runny nose...I have been taking Claritin for that and the bone pain and it works...no runny nose and no bone pain. Ask your doc if that's an option for you. I too was a lush before diagnosis with the wine....loved it and drank it a few nights during the week and with friends a lot on weekends. I have not had any (other than a few sips) since starting chemo. I am going to reduce it a lot and just save it for weekends and special nights out since it's just not good for BC gals. I am enjoying the weight loss benefits and financial savings! My husband had not had to buy white wine in a loooong time! This site has been a wonderful haven for so many of us. I could not have gotten through everything without all of these wonderful ladies...you have found the right place!
Adangel: Buongiorno mia amica! I can't imagine how bummed you were not being able to go to Italy for that....Italy is my favorite place in the whole world....so much me and my hubby were married there. We have been a few times - took our son last time when he was almost 3. He still talks about it...I am teaching him some Italian (I am not fluent but speak enough to get by). It's so adorable when he speaks Italian.....he will ask for milk or something in Italian and it melts my heart. I would love to see the video...let me know when it's up!
Chrissy: I am so glad you are better. Good for you going out and no one knowing about the BC! It's so odd to have that little secret of the "big C" isn't it? I am glad you felt OK in the wig and no one noticed...that must have made you feel good. I have been avoiding the wine.....when I am done with chemo though I am getting a really GOOD bottle of prosecco for sure!!!!
Penny: So when do you have to get the port out? I have not asked about getting mine out....I finish chemo in 3 weeks and I want that sucker gone! When is your MX? If you have questions on that let me know. Had my BLMX in Jan. I can tell you it was way easier than I thought....really! If I did not have this stupid port in my arm I would be doing everything I did before surgery by now but the port just pulls a bit so I limit myself.
Husker: Glad you got one more done!! Yippy! I hope the half dose does the trick. I have been getting a regular dose I assume and did OK last time. Nice that you have the house to yourself.....TV remote especially if there are men in the house! What a treat! Enjoy the weekend. I love your charms.....the themes of each one are so fitting!
Lorrenar: good news things are responding. I went bigger on the boobs...I was an A+ or small B and now I will be a C. They feel so big to me right now (ugly tissue expanders)....I keep bumping into things with them and I can't feel it. I am going to knock someone over with these things! LOL! I have waited since I was 10 for the "boobie fairy" to come and she finally did. I am excited about having a larger size and can't wait to get rid of the TE's (AKA coconuts).
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My nose runs a lot. My understanding is that Cytoxan brings on sinus issues for some plus I've lost many of my nose hairs so nothing to catch the drips! Welcome suebee48. There are many days this board has kept me sane and helped me figure out what questions to ask. Plus we dispense hugs freely!!
My burning issue du jour: I find myself stressing about work stuff - keeping clients happy, keeping the money coming in. I know we all have different situations and some are job hunting. I know regaining my health is most important so why am I letting this cr@p bother me. Maybe there's no great answer but I'd welcome and trust your perspectives.
In return I promise to catch up on everyone's posts sometime this weekend!0 -
Good morning everyone! It is a cold, rainy day here today. I'm glad it's today and not tomorrow! I am going to the Phillies game tomorrow! I'm a huge fan. Can't wait. I am going to go out today and see if I can find a pink Phillies hat for me and my daughter and niece.
I am glad some of you liked the tip about walking 30 minutes 6 days a week from the anti-cancer book. If you'd rather walk 50 minutes a day, you only have to do it 3 days per week. According to the book, it lowers your risk as much as Herceptin if you're HER2 pos. Another easy tip from the book: drink 3 cups of green tea per day. I forget how much this lowers your risk, but I figure something this easy I have to do. I didn't like it at first (I was a coffee drinker.), but if I can do chemo, I can do this. One other thing, if you have non-stick pans that are scratched, throw them away. The chemicals can get into your food. (I had some that were scratched. I did throw them away and replace them with stainless steel. I do wonder if this contributed. I have absolutely no risk factors or family history. Who knows?)
Welcome Suebee! Lilylady and The Divine Mrs. M, haven't heard from you for a while, how are you? Glad to hear the rash is better Chrissy! Sorry about the port Penny! MDG, you are a dynamo. Don't know how you do it!
I've heard a couple of people talk about work. I have the same feelings/fears. Everyone at work knows about my cancer. (I work in a small co, only 35 people.) They are very supportive. The other day, one guy told me I look great, 15 years younger! That did something for me. I do feel like the chemo is doing weird things to my skin. Some I think are actually good. I used to have lots of freckles as a kid. They kind of faded away. For some reason they are coming back. I do have some kind of pimpley rash across my chest though. Another guy commented on how I keep coming in smiling. The woman I work with and her two young daughters bought me a little stuffed bear that is supposed to kick the cancer away and named it Hope. Another woman keeps buying me gum to chew because she knows I said it helped with the mouth sores. My boss told me to work when I want/when I can/ work from home if I want. But we are owned by a fortune 500 co that is in Chicago and I have responsibility for getting all the financial reports in on very strict deadlines. And I am worried about the stress and if it's harmful to me. I hope the support outweighs it. Not sure what to do.
I can identify with the self absorbed teenagers. I don't know if I was that bad at their age or not, but my kids are clueless. I think it's just the age. (And probably also the fact that I spoiled them and never made them do anything for themselves.) They are good kids, but I wish they'd be a little more caring, supportive and helpful with this. What can you do? I know they love me, but....
Have a great weekend everyone! I intend to. I'm in the chair on Monday for number 3 out of 4 of AC. But then I'm moving on to taxol and herceptin. I hope everyone's hangovers are light. TTYL
Kay
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Well ladies, popping in for a bit. It is an amazing day here, 71 and sunny, no wind. Yesterday we had wind gusts of 50 miles an hour, so it is much better.
We have 4 tickets to Kenny Chesney, Zac Brown Band, Billy Carrington, and Uncle Cracker tonight - in the 7th ROW!!! I was supposed to go till last night about 10. I told DH and DD I just didn't think I should go. The opening acts started at 4:30, pretty safe bet KC won't go on till 9+ and it is at Cowboys Stadium, which is about 45 minutes away. So, I was thinking from 4-1 ish and a crowd. I didn't want to make them leave early, DD has been looking forward to this since we gave her the tickets for Christmas and has had a friend planned to go since then. I didn't want to go and be miserable, or suck it up and then end up exhausted. I don't even know what my WBC was this week, but crowds and potential illness makes me worry. Of course the second hand buzz might be nice
I just thought what if I overdo it and get sick from that, I would be pretty upset. I'm fighting the big C so hard and to do something stupid like that didn't make sense. They were both sad that I wasn't going. DD has shown so much maturity, strenght, insight, empathy, and caring through all this - I'm so proud of her! Please validate my decision, I'm feeling a little sorry for myself!We did have a reunion of sorts with our club volleyball team. My DD was on a club volleyball team last year that came in 3rd in Nationals. She decided not to play club this year. We spent from Dec. to June with all those people last year and made some lifelong family friends as a result. We were together 18 weekends or something, in MN, New Orleans, Austin, Houston, Reno, and locally. You really become bonded, I know some others on here have kids in club sports too, so you know what I mean. They are having a big regional qualifier this weekend in Dallas so we went down to watch the team and visit. It was so nice to see everyone. They sent me flowers in the hospital after my surgery and signed it "from your TAV family". They all said that I looked wonderful, that they had been thinking and praying for me. No one believed me that I had a wig on, till I took it off. It made me feel really good! One of my goals while going through treatment is to be the one that everyone says "wow, you look great, and you're on chemo?!?" and several people said that to me. Even some people I hadn't ever met who are on the team now were very kind and warm and talked to me about it. I just felt like I had to choose between the concert and that, and DD said, rightly, that it would be more meaningful for me to go to volleyball.
Jules - I would go on the riding trip, even if you have to hang in the camper when everyone else goes out. You will feel closer to "normal" and it will be good for you to socialize. I'm going to a horse show next weekend just to watch my friends (and my horse for that matter) for the same reason.
I have been drinking coffee a little bit, I can't really taste it very much but sometimes I like to just to feel normal. I had a 1/2 glass of wine with dinner the other night, and it didn't taste good. It tasted acidic, which could have been me or the wine, not sure. It was enough to keep me from it again. I had some orange juice today at VB with a small splash of vodka, that didn't bother me, it actually was refreshing. I think I mentioned this before but my onc said in response to my question about drinking - "well, not on the day of treatment, but otherwise no more than one a day is fine". Although I'm in it for the long haul (my grandmother will turn 99 this summer, lives by herself, drives, 2 crosswords/day, etc) I believe in living life. One thing cancer #1 and cancer #2 have taught me is that you never know what tomorrow brings. Said grandmother, by the way, has a scotch every night before dinner, to quote her "it just makes the evening go better". One of the family jokes is that when she turned 95 she asked her Dr. at her physical if it was ok for her to have a "couple" drinks before dinner! So if my friends are having mimosas at brunch, I may have one, but ONE instead of 2. I think moderation is the key. I truly don't think my past drinking caused either of my cancers. That being said, I'm going to do everything in my power and control to be sure it doesn't come back.
I am taking Claritin, but I attributed my runny nose and itchy eyes more to allergies than chemo. Whatever the reason, meds helped so I'll keep taking it.
Hope everyone has a great weekend. Off to spoil/console myself somehow. Called BFF for dinner plans, but she is with her boyfriend, geesh.
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MDJ: Would so much appreciate any advice on surgery since you have had yours,. What to expect with pain, so on. DH olans to take a 2 week vacation since we have dogs to walk, so on.The doc said I may be down like 2 to 4 weeks, thanks. Girls: The runny nose part started driving me crazy but not much this last round, doc says its because we loose our nose hairs, and have nothing to hold it up there ha. Have a nice rest of it, real rainy and yucky in wvA as sell.0
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SuperSally-You did the right thing, as much as it stinks to have to miss an important night out with your family. Hopefully they will have a good time at the concert and you won't have to worry because you'll avoid all of those awful germs!
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Supersal - I second that you made the right call. We have to tryst our intuition much if this stuff. hope you're enjoying your quiet evening.
Mdg - I would also welcome feedback on the pos-surg recovery. The other day I spoke yo a 40 yr old who didn't believe her bilat Mx would require 6 - 8 wks for recovery but was shocked by how long it took to regain stamina, energy, ability to drive - and she's in good shape. Also am wondering if I need to get a recliner for my recovery.0 -
re surgery - I had the right mastectomy and axillary clearance in January and was back at work 2 weeks later - mainly because the drain from the clearance had to stay in 2 weeks and so I could not go back to work before that. I did not feel too bad at all and had v little pain as they cut so many nerves I coudn't feel much anyway.
A bilat will obviously take longer to recover but 6-8 weeks sounds a very long time - I would not expect it to be that long. They talk about 8 weeks if you have FLAM reconstruction, but that is mostly the stomach muscles that need to recover.
Supersally - you definitely did the right thing - I have been to a couple of concerts but they have been ones held outside, so you don't feel so worried about being close to people in an enclosed space. - Good advice on the Claritin - I will get some and see if it helps the eyes and nose.
I am seeing the BS on the 28th April and although the onc wants the port out the next week , all the surgeons are at a conference so it will not be till about the 24th May, just before chemo 4. I am not sure about when to have the left MX yet. Its a precautionary thing as I have the lobular not ductile form and its really difficult to spot - doesn't show up on mammogram and so I dont want to spend the rest of my life worrying it has come back. I am thinking I will wait till I am completely better from the chemo/radio.
I am also still not sure about what to do about reconstruction - I guess it will depend on how much scarring there is from the radiotherapy I have after chemo. Either way I don't have to make decisions about that now - I will think about it after the treatment.
Kay and Silia - The work thing is interesting - I have started getting more obsessive about keeping my clients happy again, I backed right off to start with. I have a small computer consultancy business and I do need to remind myself that my staff really can cope. There are plusses about work though as you say - people have been so supportive. Someone also told me I looked years younger - weird. The main message here though is that while work is not bad as long as you don't exhaust yourself, stress is bad - so we do what we can and try not to get wound up about it.
huskerkkc - hope you enjoyed the house time on your own.
chrissy - I went to a wedding cermony yesterday (avoided the reception - too many people in an enclosed space) - wore my wig and no-one seemed to notice at all. I normally wear scarves but its good to know we can get away with it if we want to. I was a bit worried though as it was in a park which was quite windy - had this vision of the wig blowing off in the middle of the ceremony!
Re alcohol - I drank way too much before this - wine most nights. My onc ( and most of the stuff I have read) says 2-3 drinks a week is no risk. I am not really drinking now ( except the last week I have a whisky in my cup of tea a couple of days before chemo - awful habit started by my mum, but such a pick me up)
After all this I will try to just have only a couple of glasses of wine at the weekend - it does seem to be a big factor.Met a lady at chemo on Friday who was diagnosed stage4 8 years ago and looks great - she was only in to get Herceptin which she is having long term - not for recurrence.
Wishing you all a good week - we are all one step closer to beating this
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Kay, I have been walking very sporadically, but after reading your post this morning, decided to get serious and took a 30-minute walk around a small lake near our house. Also got out the green tea (found some at Trader Joe's in a bottle, although I have the tea bags too) and got in 3 glasses today. Thanks for the inspiration. I ordered the book while wide awake at 3:00am on Amazon
Penny, Although I didn't get much done (other than the walk) I did very much enjoy my time in the quiet house. I also have enjoyed enjoyed 1-2 glasses of wine with dinner regularly. My husband is very much into wines. But tastebuds have cured that little indugence. Husband had a great wine with pizza the other night and it tasted like vinegar. He assured me it was fine, but I could not drink more than a taste. Such a waste. I've had a go at coffee too. Drank about half, but got no taste enjoyment. More just the idea.
Sally, I concur with all the others in confirming your decision to not go to the concert. I think it is a day to day, event to event decision that we have to make. This is TAKE CARE OF YOU TIME. It is a huge risk to be in such close quarters. My daughter has a scholarship tea tomorrow. She has won a nursing scholarship that will help pay for books next year. It will be Day 3 post-chemo for me. She knows it will be a last-minute decision if I go. Otherwise, my husband will go. If I do go, we will sit near the back by ourselves if possible. Thursday I went to a school concert, sat in the back by myself.
Am hoping I can sleep tonight...don't start post-steroids until tomorrow. I woke up at 1:30 and couldn't get back to sleep until 4:00! ACK. Would prefer to sleep straight through and wake up early rather than this middle of the night business.
Maria, Still feeling good? Kymn? We had several in the chair this week, hope you are all feeling well.
Take care by sistahs. It is so nice to "visit" with you each night and hear how you are doing, good or not so good. This is a great place to vent, to cry, to rejoice, to give and get advice. Keep coming back, ladies. You are an inspiration, whether you know it or not!
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Silia - I stress-out too about what how I should be handling work. I work in a pretty stressful industry (advertising) and it's really easy to get sucked into all of it. This has really been a lesson for me in taking my foot off the gas. But it's hard. I have to keep working (keeping the money coming in) but of course my health has to come first.
Everyone I work with knows. And while they are all very nice, the truth is, everyone is just rolling along with the work, so they just don't really care/aren't very sensitive to the fact that I'm not in my top form right now. I have to be the one reminding them...telling them I don't feel good/can't travel on day 4 after chemo/have to work from home some mornings when I'm too exhausted to make my way in. It's really difficult for me to voice this stuff...not so much because I'm afraid of looking weak, but because I'm afraid it will look like I can't do my job.
I've considered taking some time off, but my status is still "freelance" (even though there's no planned end to my stint at this company) so when I don't work, I don't get paid. I also like having the distraction of work. Work and chemo is kinda all I can handle right now, but I think if I didn't have work, I'd just sit at home for the next 3 months feeling like life was happening without me. I'm sure I'd also obsess about every side effect even more than I already do!
Kay from Philly - my complementary doc told me green tea for the rest of my life...but NOT during chemo. It's antioxidant effect can also help protect the cancer...and you want to let the chemo do it's thing. Same with antioxidant vitamins. She said some is tea fine, but don't go crazy with it. I've switched back to black tea during the chemo...I drink a ton of it iced as water tastes weirdly sweet for me the week after chemo...which sucks as I usually drink a lot of it. Oh and weird water fact the complementary doc told me...she checked my copper levels (which were high...probably from my copper pipes) and said that copper helps drive estrogen, which isn't a good thing if you have estrogen receptive cancer. She recommended a serious water filtration system (Brita doesn't cut it). It sounds extreme, but the last thing I want is to second guess a glass of water. (I also live in NYC, so go knows what works its way into the water by the time it goes through the city's maze of pipes.)
Has everyone's hair completely fallen out yet? I'm 3 AC in, and there's still a pretty consistent stubble all over my head. I worry somethings not working right. It is kinda fun to rub my hand on my head right now though...I feel like one of those old GI Joe dolls.
Another random question: anyone else become aware of their heartbeat after chemo? It's the most disturbing of my side effects and the one that makes me feel most vulnerable. Especially on day 3 and 4, when I lay down at night, I can hear and feel my heart beating away. Creeeeepy! Asked my onc and he just said "yep that's the chemo." Not terribly comforting.
After a couple tough weeks, having a very "normal" feeling weekend. Yay! You know it's a treat to feel normal when you get excited about feeling up to house cleaning.
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re: green tea...I was told the same thing as bikenyc. Green tea has an antioxidant effect, which is great ordinarily. But the value of one or more of the chemos is reduced by antioxidants. So no green tea until after chemo is done. Worth checking before getting too much into it.
bikenyc - I've been noticing my heartbeat after chemo. Kinda' freaks me out given the potential negatives of herceptin.
re: alcohol...I agree with the comment about moderation. Too much may set up an environment that can encourage BC development, along with a bunch of other things. But it's too simplistic to say alcohol "causes" BC. I'm basically off the wine right now, mainly because I wan't to simplify what I have floating around in my system. I won't reject a small glass at a family dinner next week, but I'm not going out of my way the rest of the time. The onc only said to avoid it the night before chemo and the day of.
Post-chem #2 is far different from chemo #1, at least so far. The worst side effects I have had are some heartburn. I had to sit up for a while last night and eat some yoghurt before I could settle down. I slept on the couch, semi-upright for a while. I was suddenly tired yesterday, but I still ate dinner. I can deal with that.
Does anyone notice weird muscle twitches post chemo? I've had the twitchy eye for several day and now notice a muscle twitching in my leg. Weird!
I'm sitting here looking at snow coming down. Noooooooo!!!!!0 -
kay from philly, I've been keeping up with all the posts but not having much to add at the moment. That's because I'm almost three weeks past my last chemo.....which means I feel more of myself and getting seasonal stuff like yardwork done around the house. It also means I 'm gearing myself up for this coming Wednesday when I go for the 4th round of chemo (having a total of 6). I sort of cringe when I think about it. But apparently I post less when things are going relatively well and feel more of a need to chime in when I'm experiencing the extreme ups and downs of chemo.
pasmith, I experience a twitching eye after chemo. Mentioned it to the onco nurse who gave me a weird look like she never heard of that as a SE. But there was another woman on here who mentioned the same thing. Mine started after the 2nd chemo. Lasted almost until the following chemo then stopped. Came back again after the 3rd. Wasn't as strong, but still there. Now I don't have it but expect it to return after my 4th this Wed.
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Good morning Ladies
I am sitting here watching the rain come down on Day 4 past 3rd A/C. I too fell my heartbeat quite a bit in the first few days. Very annoying indeed.I try and have a liitle coffee in the morning do fend of caffiene withdrawls and I find it makes the heartbeat thing worse. I also hear the blood rushing through my ears like the sound of waves. People don't believe me when I say that I feel one SE or another 24/7.
I, too, have tons of questions about surgery. I'm told I'll be having a partial mastectomy, but other than that, I'm clueless.
Work has been such a hotbed of discussion with everyone I know. I love my job but it's quite hyper and stressful (i work at an auction). I get so much enjoyment out of it but I probably work too much, and I worry about how much to push myself...they say keeping busy is good, but how much does it affect the recovery?
Before my diagnosis, I went to Curves 3 or 4 times a week, did Zumba class twice a week and even ran 2 or 3 times a week when I could talk myself into it. I stopped all of that when I got diagnosed...mostly because I was paralyzed with fear. Now I'm thinking of at least going back to Curves but work and home take all my energy...any thoughts Ladies?
I also wanted to ask if anyone has been through something like this: They found a lesion in my shoulder bone during the bone scan. They are convinced that it isn't mets, but it def has to be biopsied at some point. I guess this could mean more chemo and treatment when I finish BC treatment? Oh joy, oh bliss
Have a great day everyone. I'm off to read how to wash my wig...any tips from the pros? It's real hair...imagine it'll require some shampoo and conditioner
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pasmith - I'm also twitching mostly in the eyes, but sometimes elsewhere too. I've heard this is a common SE.
MDG - I'm normally an athletic person, but have cut way back during chemo. It's motivating for me to hear how active you have remained during treatment. The oncology PA told me it's important to keep your heart rate under 130 which is impossible here in Colorado where the altitude is 5300 ft. This news bummed me out and I finally asked my oncologist who said no worries, you can breathe as hard as you want - yeah! I've been hiking and back on my bike and even though I can't do much it feels nice to do something "normal".
My skin looks great, but my cheeks are flushed a lot and bright red. It just came on after treatment 2/4 of TC. I look like a clown. Has anyone else had this?
It's been two weeks being bald and despite wearing hats, I tire of people staring and treating me differently. The days I feel strong I can deal, but some days when I'm feeling blue I just want to blend in. I didn't think I would wear a wig, but this week I have an appt. to look at free wigs. I think I will enjoy the opportunity to feel anonymous again.
Hope everyone has a lovely Sunday
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Thanks for the green tea comments. This is so confusing. I will stop the tea until after chemo. Back to my beloved coffee, although I'll try to do it caffein free. lthough that nutritionist did tell me a multivitamin was fine, but nothing stronger than that with antioxidents. So that makes sense, I just didn't know green tea was full of anti oxidents. Sheesh! Thanks for telling me. I am sorry Kristy if I lead you down the wrong path, but after chemo it is supposed to be very good.
BIKENYC: I still have a couple patches of hair. I was told though that none of the side effects (having them or not having them mean anything as far as if the chemo is working). I appreciate that advice re the green tea. Did your complementary doc tell you anything else? The nutritionist told me to ask the onc about taking D3 and fish oil during chemo. She thought that was a good idea, but told me to ask the onc first. (I have really low vitamin D.) I'm definitely asking first after the green tea fiasco.
Glad to hear things are going well MrsM. Good luck on Wednesday. I am in the chair on Monday for AC #3 of 4. Going on to Taxol and Herceptin after that though.
Silia I think you made the right decision too. I am going to the Phillies game today, but it's outside, not as long and I feel okay with it. LET'S GO PHILLIES! Win one for Kay LOL
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