March 2011 chemo-lounge
Comments
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PennyCookson & Kymn (love the n at the end of your name, btw), I agree 100% with your posts and how we need to take care of ourselves! Protect ourselves and let others tend to us during the bad days! You are right on the money! I love how you say, you cannot be expected to be normal. So true!
Silia, sending special healing prayers your way....and to all you other girls.....
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Silia: Is it thrush on your tongue? Anyone have any remedies for that? I did not have it but remember others somewhere on the boards talking about it. I hope you feel better soon...It's times like this that it really bums me out that we are all so far apart...one of us would be there in a heartbeat comforting you and understanding how you feel completely. I would even bring trashy magazines......you know like People or something. HUGS! I hope you feel better tomorrow. I also agree with you how people think we are completely OK. I feel like I spend so much time convincing people I am OK when how can I be OK? They just injected poison into my body. No one is OK with that going on. Sometimes my DH acts like he forgets I had cancer and chemo...sometimes I just say "remember...chemo???? I don't feel good or have the energy right now!". Maybe I should have not convinced anyone I was OK and just said "I feel like shit" and then they would not expect anything. So I guess what I am saying is that I understand....in a long winded way!
Kymn: I think we may be on to something..when you get DX with BC they should give you a pink sign that says "F off" and we could just use it when needed. I can think of several healthcare providers especially I could have used this on.......I so wish I could have played the BC card and said what I was really thinking more than once!
Supersally: The rash started back after my 3rd chemo so I don't think it has to do with work (gosh that would be great to tell my boss I am allergic to my job - LOL!). Maybe the inner CB should come out.....it could work. I may consider that. You are more diplomatic than me...I cut to the chase and just tell DH "I ain't spending a whole day there - period". I am sure he gets pissed but I am playing the BC card on that. I wish I could tell MIL exacty what I was thinking "we aren't staying because you don't like me and the BIL and SIL don't give a crap either". That would be quite a BBQ. I guess I need to keep CB under wraps for that event.....I also have a max out of pocket payment of $2500. Once I pay that for the year I am done. I stopped getting bills from any docs. No one even asks for co-pays. I am truly blessed....I know that. I love AETNA. I guess my job is good for something.
BikeNYC: I hope your counts go back up. Usually 2 weeks after my counts were their lowest on CT. I hope I don't gain on Tamoxifen....good lord can't there be something good in this like maintaining the lower body weight after dx??? I did gain on chemo (about 5 lbs) but the steroids made me eat all day long. I am not surprised I gained the way I was eating.
I am still itching. I started the steroids last night and it was a little better today. I am sure it will improve over the next few days...the real test will be when I go off the steroids again. Will it come back AGAIN this time? Anyone want to place bets????
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Thanks for all the prayers for my friend. She is having surgery on June 8th to try to remove some of the tumor. Also thanks for all the kind words to me! I am feeling some better today, but I have learned if I feel like crap let it go! It will be there another day.
Oh a trick for thrush is peroxide, baking soda and water to rinse.
good luck girls!
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Happy birthday to me! I'm 52 today. DH wants to take me out to lunch. I wish my taste buds were working so I could enjoy it. Then tonight, my beloved nephew's wedding. I will be trying false eyelashes out, will let you know how that goes. Should be a hoot. Something tells me I should have practiced before now.
Yes ladies, taxotere is a booger. I have had 5 strong ones so far, and have "growth rings" on my finger nails for each one. Also white junk on my tongue which I brush off with my tooth brush several tomes a day. Also copious amounts of mucous running from my sinuses down the back of my throat, 24/7. I could go on, but you get the idea. My last TAC is on 6/ 14 I think. I seriously don't think I could go on if I had to do more than 6.
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Happy birthday, Jules! Hope you are able to enjoy the day as much as possible!
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Thank you MrsM. I intend to try.
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Happy birthday Jules - have a lovely lunch and enjoy the wedding. I am three days behind you with my last - and then we are never going to feel like this again.
Good luck with the lashes - you are braver than me, bet you look gorgeous
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Jules - Happy, happy birthday!! I'm so glad you have festivities to attend. You will look smashing! Here's to a coming year filled with all good things. (The beauty of this bc situation is that it gives us such clarity re: what matters and what DOES NOT matter...)
To each and every one of you that wrote your support or even just thought it to yourself -THANK YOU! I really really needed it. Am a little slow "out of the gate" today but hoping I'm turning a corner. A thousand blessings on each one of you! I am definitely feeling the love and the permission to feel how I feel...
I am going to try the peroxide, ksmatthews. Thanks. Will keep your friend in my prayers also. Hugs to all.
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Happy Friday ladies. Happy Birthday Jules59. I hope it's as gorgeous a day for you as it is here. Have a great day.
I am going to call myself out of the hole for #4 today. It was a shallow hole, but the sides were crumbly which made it hard to get a foothold. Big D showed up but not for too long. My taste is still off but my mouth doesn't feel quite so weird. Life isn't worth living when everything tastes lousy. I would eat something that I couldn't really taste and then feel like I hadn't eaten at all. Still, it wasn't a bad round and now I'm impatient for June 16th to arrive so I can do #5 and just get this over with.
My house has been taken off the grid for the day (solar panels being installed) so I have no power. It's a weird feeling. Can't cook, vacuum or do laundry which is a shame (NOT!) It's gorgeous outside and the birds are singing. I'm reading, doing some writing, working on a project, anything that doesn't require power. It's not that bad!
I hope it's a relaxing, fun weekend for everyone.0 -
Have been gone for several days for my surgery so am just now catching up on all posts. So sorry to hear about all the SEs so many are experiencing. It is such a scary thing but so comforting to have all of you to compare notes with. It has been over 3 weeks since my last TCH and I am still having some SEs including the eyes running all the time.
Had my surgery on Wednesday and stayed overnight in hospital. Things looks good so far - the nodes looked clear but won't know for sure until pathology report is in next week. Still very tired and sore - I always expect to get better right away and it surprises me when I don't - I guess I am often in denial - lol. I seem to have put on about 6 lbs. with the surgery even though I had no food for 36 hours and barely ate anything yesterday. I agree that there should be some silver lining to all this such as some weight loss but this is all so unkind to us. I always think it is bad enough to have BC but to add the hair loss and weight gain for so many of us is just so unfair.
Maria - Hope you find a solution to the rash. Mine appears to have been caused by the steroids and when the dose was reduced the rash that appeared like clockwork on Day 10 of chemo was significantly less severe.
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Done with chemo!
You know, it seems kinda weird. Like can this really be over for now?
My worst days seem to be # 3 and 4 after the chemo, so right now I'm only feeling tired. I agree how crummy life can be when nothing tastes right, pasmith. It is always welcoming when the taste buds come back around.
I am still going to be checking in on the chemo lounge but sure felt the tremendous support and understanding of all you gals going thru it with me. And it truly helped me emotionally and mentally. God bless to you all.
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Happy Birthday Jules!!! And many more.
Congrats on being done DivineMrsM!!! That is awesome!
Recovering from chemo#7 and having severe flushed face (steroids) and no sleep (steroids again). Hope all have a great weekend!
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Happy Birthday Jules, hope you have a GREAT one,
min
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Happy birthday Jules! My oncologist's BD was today too. When I finished my chemo and they had gone over the last of the instructions, all of the nurses came in and sang a song. I was so overwhelmed I'm not sure WHAT they sang, it might have been "Congratulations to you" to the tune of Happy birthday, but I'm not sure. The oncologist joined them and beat on a little drum. HA! Then they surprised HIM and sang happy birthday to him. He was so surprised he blushsed (and he is of Mediterranean descent...not often that you notice blushing!) The nurses told me I must be a favorite because he has NEVER joined them in singing to a patient before. So then I really cried. this is the guy that called me his fragile patient and wondered why I was so upset about hair loss-it wouild grow back. But we came to an understanding over these last few months. He asked me yesterday what advice I would give to other women concerned about their hair loss. That took me aback and I could not really answer very well. but I plan to email back once my emotions are under control. I can write much better than I can speak if I'm emotional or passionate about something. So if you have any suggestions, pass 'em along. How did you cope with and/or prepare for hair loss? I told him I hadn't recovered yet, but this forum helped. He told the nurse navigator to "WRITE THAT DOWN!" My husband also suggested the book "THe Cancer Husband" (I think that's the title). He was reluctant when i gave it, but said yesterday to me and onc that it was VERY helpful and he wished he would have had it a first diagnosis.
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Mrs. M, Husker, and maxine - hope your SE's are not too bad and you feel back to "normal" soon.
Jules - Happy, happy birthday! Celebrate all day, false eyelashes and all:)
Maria - I think you ARE allergic to work, you should quit and find out! I hope your rash is gone for good.
Everyone else - I hope you had a great day and are prepared for a relaxing, healing weekend
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ChrissyW-Glad to hear you are doing well after surgery!
DivineMrsM-Congratulations on finishing chemo!!
Huskerkkc-Not sure how I'd answer that question either. Losing hair is hard. I felt better once we cut it, shaved it, and when it was finally all gone. I hated the anticipation of knowing it was going to happen.
I am recovering from chemo #7. Doing ok so far, just getting a little sore from the Neulasta shot and my face feels so sunburned and flushed.
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Happy Birthday Jules! How did the false eyelashes work out? I think I am going to try them too. Tomorrow is my daughter's dance recital and she has to wear them, so I think I will try them out too. Last appt. with onc, she said she noticed I was losing my eyelashes and eyebrows. Duh, did she have to point that out?
Glad the surgery went well Chrissy! Congrats on being done Mrs. M and Kristy! So many of the group are done! I'm so happy for you all.
Kristy, that is wonderful that you had that experience with your onc. I really have to say I don't know how I'd have gotten through without mine. With this last trouble I had, she gave me her cell phone, called me at home several times to see how I was doing. Honestly, can't believe how caring she is. I can't wait to be done, but I'm going to miss her. Oh course, I've still got 2 months to go, so don't have to worry about that for a while.
Everyone else, have a great weekend and take care. Hope the sun is shining everywhere.
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Kristy and MrsM glad you are done with chemo. Don't leave us, we still need you.
Chrissyw, glad you are home from surgery and all went well. Wishing you a speedy recovery. I'm facing another surgery in the future myself.
Thanks for all of the birthday wishes. I had a great day, lunch with DH (pizza because I could actually taste it) Then my nephews wedding. I'm no longer a false eyelash virgin. I went to you tube and watched several videos before I started. Initial placement of the eyelashes went well until I decided that the first on I put on wasn't close enough to my natural lash line, so I took it off and started over, mucking up the rest of my eye make-up. I finally got it put on and cleaned up the mess, and they looked great. My sister-in-law's sister told me no less than 3 times how pretty I looked...it was kind of embarrassing, but it was the first time she'd seen me since I started chemo and I guess she thought I'd look like death warmed over. I think I would use them again now that I know how. especially since my once lush lashes are all but gone.
The wedding and reception were great fun and a welcome distraction from all of this cancer stuff. And the bride was truely the most beautiful one I've ever seen. My nephew's a lucky guy.
Have a wonderful SE free weekend.
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I JUST REALLY WANT THIS WHOLE THING OVER WITH-JUST SAYING...0
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lilylady--Hold on. We're getting there.
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Tell me about it Lilylady. Since I was allergic to Taxol, I have to try Taxotere next week instead. And that is every 3 weeks instead of every two. Just added 9 weeks on when I would have been finished in 4 if it hadn't been for the allergy. I feel like crying.
But we'll all get there eventually. Somebody has to be last.
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Had a rare pity-party while getting ready to go out last night. I have too many blessings to even count but just got overwhelmed all of a sudden...that whole give up a year of your life ro deal with this and I realized I am barely starting month 4. Even with little SEs and positive outcomes I am just so sick of this I could retch. That whole strong woman thing just blows....
When I picked up my friend last night she gave me an awesome card she had made about recovery and all that and I just started bawling. We don't talk about BC that much-and I am glad for that-but she said she noticed I had gotten pretty quiet the last week or so. See, another blessing-a BFF that knows you to your bones.
I guess I am just tired of being tired!!!
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Hope your birthday was great Jules!
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Jules,
I will still be hanging around...can't believe that chemo is done, but I was so exhausted one day later. Feel like fatigue has finally caught up-cumulative effect I guess. We went to X-Men movie this afternoon and almost fell asleep in theatre, then did fall asleep on the way home. Then sat down on couch and fell asleep again! Have rarely napped all these last 3 months and now twice in one day. Almost missed going to get Neulasta shot. Luckily DD woke me up as she heard me on the phone this morning scheduling my time to go in.
This site and this thread in particular has been my saving grace through all this and I'm not done yet. Friday I see my BS for first mammo (or MRI? not sure-can't remember-sigh) then the 16th I have consult with RO. July 1 I see onc again for one month follow up. They told me no more than six weeks for radiation, so that's good; better than I expected.
My daughter and son-in-law came yesterday to help with some outside work and DD brought cupcakes to celebrate end of chemo. I was weepy all day. Lilylady I can appreciate the "tired of being tired" feeling. That is exactly how I feel. Even being "done" (am I really?) I am so tired and overwhelmed. So hang in there-we'll see each other through.
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Hang on in there kay and lilylady, one day we will wake up and know that this bit is over. We may all have lots of blessings but we also have been given a pile of whatsit, we will learn to work through it but we can't always do it cheerfully.
After being fairly positive I am hating the thought of #6. I know its the last one but I just hate the thought of them putting that in me again.I have got very grumpy this time rather than teary, poor DH!
Congrats Christy and MrsM, we will all join you soon.
Jules - so glad you had a good time. We shoul dhave a picture with the lashes!
I am off now to fly a kite with my grandson - my daughter saw Mary Poppins and had to rush out and buy a kite. Can't get the silly song out of my head.
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Lilylady, me too. This all began in Jan. with my mammogram, here it is June and I still have so much ahead of me. Another surgery(or more if my BS doesn't get clean margins this time), 6 weeks of radiation, years of doctors ahead of me. Being stage 3, I don't think I will ever get BC out of my mind. It will be full of "what ifs". My extended family will be expecting me to be normal when my treatment is over, but my mind won't ever be normal. I just want my old life back.
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It is mind boggling at times to think how life does change so suddenly. I think we transcend to a "new" normal and that "old' life is not something that is going to come back. Hey, we have made it this far and weathered what life has thrown us, so we will continue to roll with the changes. We don't always have to do it willingly or cheerfully, either and we are allowed to complain!
Many of us seem to be weary travelling this road. At least we are here together. You have all helped me thru. Tho I finished my last chemo on Friday I am still dealing with its after-affects. And as you say, Jules, years to come of dealing with this. I guess I'll have to take it one day at a time.
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So much to catch up on with you busy, chatty gals! My BFF was here for the weekend which was a blast! I am now trying to get caught up on things. Still dealing with the rash...it is a bit better on the steroids but not gone after 4 days...still on them a few more days but I don't think this dose will kick it completely. I am so frustrated by that.....we went to the pool yesterday (yes, I harnessed my ugly tissue expanders and did not flash anyone in case you are all wondering) and I remained in the shade under a tree. It was such a bummer not to be able to go into the pool with my son....he was happy to be there with my BFF's kids so he had kids to play with. I just figured sun and chlorine were not going to help my skin issues. Even the heat gets me more itchy.....I took a super COLD shower when we got home!
Jules: Hope the Bday was fun and you did not think about BC at all! Glad the lashes worked. I have not lost mine yet but tons of people lost them even 8 weeks post chemo so I am waiting to see what they do. I am thinking about buying some lashes to have on hand in case.... The wedding sounded nice. It was probably fun to get dressed up for something. I have not been "dressed up" for anything in so long....would not know what to do!
Silia: Did the peroxide thing work? Gosh I hope so. Your support to all of us has been appreciated too! We are all in this together girl!
Pasmith: The whole taste thing was a huge bummer. I am happy to tell you that as soon as I was done with chemo within 2 weeks my taste was back. It seemed gone during most of chemo despite the fact that I had chemo every three weeks. I was happy when my tastebuds came back so quick! Hang in there. I know it's crappy. I hope the big D is gone! Not fun....
Chrissy: HOw are you feeling after surgery? I hope all is OK and you are healing up and getting stronger each day. They gave me so many fluids in the hospital I felt blown up like a balloon! I am sure it was all the crap they pump into your body. Be patient..you can tackle the 6 lbs. After all of this it may just disappear on it's own. Please let us know how you are feeling!
Divine: Congrats! That's awesome! I am so glad you are done too! My worst days were 3-5 post chemo but you know what - you won't have to go through that again! Soon it will be out of your body and you can get yourself more back to normal. So happy for you!
Maxine: I hope you got some sleep....the flushed face at this time of year looks like sunburn! I welcomed the flush face back in March..I was soooo pale from winter. Hope you are SE free this round and got some sleep.
Kristy: So glad you are done!!!! Fantastic! Another chemo lounge graduate! We need some champagne around here with everyone finishing up! I hope your SE are minimal and you are looking forward and putting the chemo behind you girl! Glad you survived the bus trip and hopefully you managed to have a little fun. PM with details!
Supersally: Can you write a note for me for work? LOL! "Dear boss, Maria can't go to work because it is extrememly annoying and it causes her a horrible allergic reaction. Can you continue to pay her while she sits home and eats bon bons? Thank you for your consideration. Sincerely, Supersally from BC.org" Gosh I wish it was that easy.....it's OK. As soon as DH gets a job offer I am outta there! We even decided that if it takes too long because he wants to be picky and only move for the right job I will just quit. I still have surgery in a two weeks and I will be off for another month so it's do-able for now. I did tell my DH that you said I was allergic to my job though...he LOL!
Colodisney: I hope you are doing better from #7. How many more do you have? I hope you are almost there....hugs!
Kay: Those medical people just know how to say the wrong thing sometimes, hu? Let me kmow if you try lashes too...I want to get some in case they go quickly! I am still playing connect the dots on my eyebrows. My BFF said she couldn't even tell! (that made my week!!!! - with BC the little things these days make my day or week!)
Lily: I am sorry you are having a downer right now. You are entitled to that! This is hard and no one should ever have to deal with this really. It's ok to have a pity party...we all do. Let's sit at the bar and have a drink...I am buying girl! I feel the same way....a whole year of my life spent on BC. My mantra these days is "each day I get through is one more day closer to being done with this". I keep reminding myself that. The shit hit the fan for me on December 8th....it has been 6 months for me so I am just a little ahead of you. I still have more surgery for my reconstruction which won't be done until the beginning of next year most likely. It is a loooong, depreassing, emotionally and physically exhausting road that no one should have to walk. All I can say is I am so blessed to walk along this path with all of you. You have all picked me up when I was down and held my hand (virtually) and made me laugh at my saddest moments. Vent all you want dear Lily....it's OK. No explanation needed. WE GET IT! HUGS!
PennyCookson: It's OK to be grumpy.....you are almost there though. Try to hang on. I can't think of a better way to get out of a grumpy mood than flying a kite with your grandson! One smile from th kids can melt away anything.......hope it was fun.
Jules: I too want my old life back but I know it can never be the same.....I keep longing for just ONE DAY of not having any knowledge of BC. Just ONE carefree day...not worrying. I know it will be the dark cloud over my head even on the sunniest days for the rest of my life. That is hard to digest. If I could just have one day......
Divine: Well said...amen sister! I am glad we are doing this together - you all make it a bit easier with your words of encouragement, jokes and occasional juke box songs....speaking of which, we need a GOOD song for today - anyone got one that will make us all smile????
I want you to know I talked about almost all of you this weekend with my BFF and about our chemo lounge. I had her laughing out loud with a few comments. Lily - she loved your out the door check list (boobs harnessed, wig on, ass covered, etc....too funny!). You guys are the best!!!
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Wow, I had a great weekend! It was my daughter's dance recital. It was a lot of fun. The kids did such a great job and the costumes were beautiful! The cutest dance (other than one of the ones my daughter was in
) was this group of six year old girls that danced to all the single ladies. The had these light up rings on their hands and they just dance with so much attitude sticking their hands outs when the sang if you liked then you should have put a ring on it. LOL really cute.Penny thanks for the encouragement. I am feeling more positive again. I was afraid it might have been the Herceptin I was allergic to and that scared me because I have been told how good that is for HER2 +. The "challenged" me with it last week and so far it hasn't caused any reactions, so I guess it was the Taxol which is a relief to me.
I absoloutely love Mary Poppins. Flying a kite sounds like a lot of fun, although supercalifragilistic expialidocious is my favorite Mary Poppins tune.
Maria, my daughter has been wearing false eye lashes for dance for several years so I was experienced putting them on her, but never myself. I did it yesterday for the first time. It's a little harder getting them on yourself than someone else, but I got it eventually. They looked really good, much better than the 3 lone eyelashes I have left. My sister commented that I looked good with the makeup on but didn't even realize they were false eyelashes. Definitely a good alternative if you've lost your eyelashes. I'll be wearing them every day now. That onc really did make me feel badly with that comment about the no eyelashes or brows.
So happy for everyone that has finished up and even happier that you're all still sticking around. It's been said by others as well, but this lounge has been a huge help getting through and I've still got a ways to go so glad you'll all still be around. Great to hear that some of the side effects are completely wearing off for you too. I haven't had chemo in 3 weeks now (just the Herceptin) and my taste buds seem to have come back too. I hope you've seen the end of that rash soon Maria. That has to be so annoying. I'm on steroids too right now to get my lungs healed up and I know i can't wait to be off them either. I haven't had any problems with swelling or anything, but now on these dang steroids, my ankles are looking pretty big. It makes me hyper and my nerves bad too. I can't wait to be done with them. I've got 3 more weeks on them. But at least now the dose is lower and I can stop with the blood sugar checking and insulin. Progress!
Hope everyone enjoys the rest of their weekend.
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Going this morning for my Neulasta shot. My schedule is a bit off...I was getting the chemo on Wed and the Neulasta on Thurs. But had to switch this time to Fri for chemo so today (Monday) heading out for the Neulasta. I was exhausted over the weekend. Is that because I did not get my Neulasta shot the day after chemo? I just wondered if not getting the shot to boost the white blood count made me weak.
I am hoping to perk up here in the next few days...will be having a grad party for my DS next Sunday at my house. It should fall into place, lots of help, but have little things to tend to. Keep me in your prayers, I'm hoping all goes well so DS has a nice party. Couldn't ask for a better kid.
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