March 2011 chemo-lounge
Comments
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I will need to look up Kymn's photo too (and to watch the Martine McBride video)...
I appreciate the prayers for me as I prep for Thursday's surgery. For those who have been through surgery (which is most of you), what is the one top tip you'd offer to me in preparing and powering through it? Thanks in advance...
Having an urge to play "Beautiful Day" by U2 - it's so uplifting and affirming. Wishing everyone a beautiful Friday and weekend!
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Silia
When you get home and need to shower - put the drain bottle in a plastic bag and hang it over the taps - gives you 2 free hands
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Have some really comfortable, easy to put on clothes to go home in. They suggested I have either a button down or zip shirt so I didn't have to lift my arm up to put it on. You'll also want the shirt to be big enough to be able to pin the drains inside of it. I've heard some women wear a wife beater shirt (I really hate that name!) under their shirt and use that to pin the drains on. If you do that, you'll still need a shirt large enough to fit over it. I don't know if you're having anything with the abdomen, but if you are, also have a pair of pants that you can just pull up and be comfortable in. Maybe a pair of yoga pants a size bigger than you normall wear. Instead of a bra, I bought some camis with a shelf in them. I'm still using those instead of bras at 3 weeks post surgery. Not sure when I'll be comfortable enough to wear a bra. It doesn't seem like any time soon though.
I guess everyone has a different tip about the drains. What they told me to do with them, was get one of those id tag things that hang around your neck, or just tie a shoe lace or ribbon around your neck and pin the drain tubes to the shoe lace or ribbon. That would also give you two free hands to shower.
I would also say don't be afraid to take pain meds. I think you'll heal more quickly if you feel better. But be prepared, they can be constipating, you'll probably be given a stool softener in the hospital, but if not, ask for them.
Get as much sleep and rest as you can, I think that will also help you heal. And eat lots of protein.
I'm not sure what kind of surgery you're having or how much pain you'll have, but know that it does get better. I felt better each day. Saying that, but the first day after surgery I screamed just sitting up in bed. By the second day, I was getting out of bed myself to go to the bathroom. And getting home on the fifth day, I was walking up and down the stairs to use the bathroom at home. Two days ago, 3 weeks after surgery, I walked a mile and a half. So try to comfort yourself by knowing that the worst is over and it will slowly, but steadily get better from here.
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Shoe laces and safety pins to tie drains for shower
button up tops
drain cammie (my hospital provided one)
soft tank tops...never could wear a bra with my tissue expanders
laxatives and stool.softeners....a must!!!!!& OMG it was bad
wheat crackers to eat when takin pain meds
pillows in car for ride home
wedge pillow for bed
comfort food...organic veggie soup
chocolate...it has medicinal.qualities when you cant drink wine because of pain med :-))
calming music on ipod to destress you
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Kymn--Love your pics! You look great. You're making me think I too can go topless. I need some colour though if I want to look as good as you. I can produce a faux hawk like yours with no paste required--it goes that way on it's own. But it can only be seen when the light hits it just so.
I woke this morning with a weird dream running. I had been fussing with the odd long bits on my head and then my hair suddenly grew out. It was chin-length, very dark, and very thick. It looked like it had been cut with hedge clippers so I was trying to get an appt with the hairdresser to clean it up and get the colour back to normal. My first time out uncovered was with this full head of hair. Wishful thinking.
It's not actually the short cut that makes me feel naked; it's the lack of bangs. I have ALWAYS felt exposed if my bangs are too short or pulled back. I have no choice but to suck it up unless I want to wait for about 3-4 inches of growth.
I feel like I'm become O-C about my hair but I guess it's better than obsessing about SE's.
Silia--regarding surgery, I'd say to get your rest, which is obvious. But also don't anchor yourself to the bed or a chair. Move around. Walk around the house, outside. Go out for a coffee/tea if you're feeling up to it. But always have an option to get back home for a rest when you hit your limits. I would go out for groceries, let my DH drive and carry everything. I'd just walk around issuring orders. Then I'd go home. The key is to be sensitive to your limits and not push too hard. Rest is important, but staying immobile makes it harder to get moving again.0 -
Great advice, gang. Thanks so much for your thoughtful input! I'm having BMx with axillary dissection on the R side. While I could use a tummy tuck(!), I'm glad to say abdomen will not be involved in my surgery. I'm most worried about the constipation since that was the horror of chemo for me... I will be sure to get softeners.
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MY SURGERY TIPS
I plugged some of my lamps-including my bedside one- into one of those remote control plugs that most people use for Chritmas lights. When I couldn;t sleep and wanted to read I just had to click the little remote control instead of trying to stretch my arms out. They are tiny like a keyring fob. I just pinned the bedroom one to my sheet. The one by my chair in the family room was in the pouch with theTV remote. Lowes sells these in their lighting dept.I realize you have people living with you-I was by myself.
Also, pack yourself a few favorite snacks for the hospital. Some Goldfish or little pretzels, a few pieces of hard candy-things to get a bad taste out of your mouth or soak up stomach acids.
I used a fanny pack purse for my drains when I went out. I was wearing loose blousy clothes anyway and 2 drains fit nicely in there. I didn;t have the 4 like a lot of people.
Biggest surgery tip----don;t have your drains pulled to soon. I juts got fluid drained off for the 6th time. I have at least 1 more to get thru probably. I went a little nutty about the drains-what I needed were some happy pills so I wouldnt fixate on it.
Headed to town to buy hair dye---big Saturday night!!! WooooHoooo
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Silia: the drains can definitely be uncomfortable (especially when you need to strip them) so I took a pain pill about 1/2 hour before with a little food...also was very anxious to get them out and wound up having fluid drained off twice ....you will survive this !!!... I will be sending positive thoughts your way on Thursday....0
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Silia-Be prepared for how hard it is to lie down and get up. I slept in a recliner for about two weeks just because it hurt a lot. Not sure if it will be so hard for me this time since there won't be any nodes out but I'll probably at least start out in the recliner. Another good idea-get Netflix or rent some movies. Relax, and remember the seat belt in the car hurts. Take a small pillow in the car to put between your chest and the belt.
Thanks to whoever mentioned here that Latisse is a prescription. Called my insurance and it's covered.
So weird they covered that and wouldn't cover my wig. 0 -
Passmiith, I hate no bangs too, but went topless for the first time at church last Sunday and then to school all week. Have not colored it and the gel is not working like I'd hoped/imagined, but think I'm just not sed to spikes and such short hair! The kids were funny and honest. They asked what I did to my hair and one kid said, "You cut your hair GRAY!" Hmmm...I was telling myself it was more blondish (my naturual color, although gray was there before!) Feels so much better. Kymn, you look so cute. I really should try to post a pic too, but am so self conscious about pictures, even before all this. At least I don't look like a concentration camp survivor, like I did before (except for the skinny part). I hate the dark circles and even with cover up, they look so dark. I always look like I need more sleep, which I probably do!
Silia, good luck with the surgery. Stilts, hope you are feeling better too. I go this Thursday for my 3-month PFC check. Had bloodwork Thursday but dont know results like I usually do since they did the CA 27-29, which has to be sent out to an out-state lab. Usually I can just wait a few minutes and they will run the labs and give me a print out. Guess I'll have to wait until the appointment. I'm sure it will be fine, just the usual "is it really gone" worry we all seem to have.
Am going to Omaha tomorrow to see Jersey Boys with husband and DD2, who goes to nursing school in Omaha. Should be a fun day. It has been so nice here lately.
My beloved Huskers are playing Fresno State tonight and are really sucking air. We are only up by 6 points and this should have been an easy game; we look terrible! Hope there are no Fresno State fans/alums that I am offending.
Wishing you all a good Sunday.
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Pasmithx2 - HAPPY BIRTHDAY lady !!!
I hope all of you ladies are having a blessed day as we remember 9/11/2001
Oh BTW the Dallas Cowboys play tonight... "GO COWBOYS".... :-)
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Thanks for the continuing tips, gang! I am grateful.
Kristy - How was Jersey Boys?! That shows coming to Philly in December and I'm thinking I'd like to go for my bday...
lily - how has your hair turned out? I feel like my hair is barely growing even though I've started with biotin - arghhhhh.
DeeDee - Hard to believe it's been 10 years since 9/11, isn't it? It's crazy sad.
Wishing each of you a good week.
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Silia, Jersey Boys was great! Frankie Valli wasn't my era, more my parents, but I knew all the songs but one. Great story, based on his life (mostly). My DD2, age 21, liked it too, and she didn't even realize Frankie Valli is a real singer and the songs were "actual" hits! Worth seeing.
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Oh I want to see jersey boys too! And Wicked. I hope they both come to Philly and I get to see them. Or maybe take the two hour trip up to NYC to see them.
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Hi all-
September 12...and no rash! Woo hoo! Hoping it stays that way for another month and I will be good to go!
For those of you that have gone through the exchange to implants already....what was surgery like? Did you have drains again? We have a wedding on October 30, so I am trying to make sure I am working around a vacation and the wedding. How long was recovery?
Musical lovers-Jersey Boys was great fun...and Wicked is not to be missed. It is amazing. See it on Broadway if you can. I have done both and they are good, but Broaday's was better.
Silia-I read a lot of threads on preparing for the mastectomy. One person bought long sleeve zip up jackets at Walmart (by Danskin) because they had inside pockets for the drains. They came in very cute colors, were around $10. I bought three and rotated them. They were fabulous, and not too heavy...a lightweight knit. Not sure if they still have them but you might check. The inside pockets were good because I hated wearing stuff strapped around my waist. I then just wore nice black knit pants. I did get a couple of the mastectomy tanks and those were nice to put under the jacket.
For shower-I used the glow in the dark necklaces to hang my drains on. Although after I showered the first time, it was such a huge amount of work, I mostly did a thorough washing every day. I only showered a few times.
I lasted in the recliner for about 4 days, but I had purchased a medical wedge pillow and it was great. One night I couldn't take the recliner any longer and went to bed with the pillow. Worked great. Also, our recliner was leather and tended to get hot sitting in it, so I bought a twin size mattress cover and stretched it over the chair. The elastic edges fit under the chair and held it in place really well and it helped.
My PS installed a pain pump for 4 days. Ask for one. It is amazing! I had virtually no pain, just soreness. I quit taking pain pills within 48 hours.
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I bought my wedge pillow from Bed Bath and Beyond. It was $29.
Hair color did not work out-I should have waited til I had more hair. It look way worse than before I dyed it. I bought some Prell shampoo and will use it to strip it out. The gray wasn;t such a contrast with the thinspots. With the color in it it made it look like way less hair. I will be using ballcaps til I get it back to where it was. I spent too muc time on the hair thread and got all excited at all their cute hair. I am just 8 weeks PFC-I seem to be a little behind the others. I think I will spend the money and do the Biotin stuff. After all I am worth it!!
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Thank you for such a warm welcome! I look forward to hanging out with you ladies you are a great bunch!
Do any of you have taxotere induced neuropathy in your feet? What do you do for relief? That is my biggest "pain" from chemo. I take multivitamin, B-complex, B-6, fish oil, L-theanine and just started L-acetyl carnitine. Any suggestions?
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FLwarrior-I am having foot problems. Can you describe what issues you are having? I want to call my onc about it and get something set up for after my surgery. Foot issues are horrible!
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Good afternoon ladies, thank you for the compliments for those of you who checked out my new due on the hair hair hair thread. I had a busy weekend, DH had a ball tourney so spent alot of time at the ball fields, also met with the breast a bridge dragon boat ladies here in my city. I am thinking of joining next year would be fun to try something different. so sorry I dont have time to catch up on everything I am at work but just wanted to pop on and say hi, hope you are all having a great day
Hugs Kymn
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Kymn - you look gorgeous, lilylady I still have very little hair and lots of scalp so I definitely won't die mine.
FLWarrior - sorry about the feet, make sure with the figh oil you take alot. I have 15ml a day (mine is for joint pain) of the liquid stuff with Vit D.
Going to see another lymphedema woman today.
Have a great week everyone, Go the Wallabies - I believe we are playing you guys in the next week or so.
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Hi Ladies-
I was wondering, what kinds of supplements are you all taking? Were they recommended by your docs? Is there any concern about interference with other meds, such as tamoxifen?
I know I have read vitamin D, omega-3s, aspirin, etc., and I figured I would ask the experts here since I have no idea what I am doing.
I hope you are all having a great week. I am feeling good, trying to lose some weight and getting back to some exercise...that itself feels great!
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Wanted to say hello to everyone. Have lots of nervous energy re: my surgery on Thursday. Bouncing off the walls of the house... need to do more cleaning now and then some more shopping. I SO APPRECIATE all the input re: getting through surgery and being prepared.
FL warrior - In addition to B6, I sometimes took L-Glutamine for neuropathy but don't think I mentioned it to my onc - suspect he would have said no. It's tricky with all the supplements - I take a bunch but there's frequently conflicting beliefs re: what works, what interferes...
Sending hugs to all!
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Morning ladies hope you are all doing well today. I cant believe I am almost done all active treatment what a wild ride this has been. I have one more regular radations tx then 5 boosts then I am outta there
Hugs Kymn
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Maxine - my Onc approved the half an aspirin and Vit D because mine was low and fish oil and I also take a multivitamin, not her recommendation but seemed like a good idea.
Latest LE lady was very helpful - I need to wear a sleeve at work, and exercising but not all the time. She was very pro exercise both in helping Lymphedema and in managing side effects of chemo/rads and this stuff generally.
Good luck Silia
Nearly done Kymn!
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Kymn: You are almost there..that's great! You sound so excited about it - I would be too!
Silia....I know the anticipation stinks. Hang in there girl.....it will be over with before you know it and if you are like I was, you will be amazed at how well you did. Good luck!
Penney: Glad you go someone to work with you on that arm. I hope it stays symptom free. I can only imagine how frustrating it is.
Not much new here...I auditioned to teach aerobics here since our move but none of the places by me have openings right now. I am going to look into some other places nearby and see if I can find a class to teach. I am going nuts here not teaching!!! I miss it! We are celebrating DH's birthday tonight....organic grass fed rib eye steaks on the grill, spinach salad with walnuts and broccoli. I baked black bean brownies for dessert...but I am topping it with chocolate ice cream (I am living on the edge...ha ha!). By the way, did you know that Oberwies makes hormone free ice cream??? Just thought I would share for you ER/PR+ gals!
I hope the rest of you are doing well!
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Lilylady-I finished chemo on June 13. I took 3000 Biotin a day and thought my hair was going pretty well. I quit taking it after I had my tissue expanders replaced and developed a rash. Wasn't sure it all the supplements could be contributing. I think my hair is at a standstill in length, but seems to have filled in a lot. It is about 3/4". I am bummed about your hair color trial. Like you, I am all fired up to get it colored, so bought some semi-permanent stuff to try today. My hair colorist would probably spin in his chair if he knew!
Flwarrior, MaxineO and Colodisney-I was on Taxol which can cause neuropathy. I did not have much pain, other than joint pain just a little right after treatment for a day,but I took acetyl l-carnitine, a couple thousand mg (?) a day. There are some studies underway with it now. I also had the glutamine, but ended up taking the l-carnitine. If I did, I rarely even had any pain. I did not take too many supplements during chemo. I read a lot of cancer diet books, and it seemed like there are so many conflicting opinions, I just decided to stop for the three months I was on chemo, just in case. I did stay on Vitamin D. My onc suggested the l-carnitine. He said no to Vitamin C, just in case it conflicts.
Now, just on herceptin, I am back at it. I take Turmeric, Co-Q-10, multi, b complex, biotin, vitamin C (a lot), fish oil, vitamin e and occassionally a calcium/magnesium pill. Oh...I did take a probiotic during chemo and that helped with the intestinal issues. Also ok'd that with the onc.
If you go on Tamoxifen, check to make sure none of the drugs you take cause an interaction with it. There are several that do. I was on an anti-anxiety drug (cymbalta) and it reduces the effectiveness. It was time to wean off of it, so that was ok. However, I have such terrible hot flashes during chemo, which continued, I am not taking Pristiq, not for anxiety but for hot flash control. It has helped them not be so bad.
mdg-too bad we can't figure out how you can teach us in a webinar! I went to a zumba class the other night for the first time and felt like a total klutz. Told my friend I thought we were taking part in the 6 year old level dance classes we used to watch our daughters do. LOL. The teacher had a little thing she called, "slap (your hip), tap (your shoulder), woo! (throw your hand in the air). I swear we were doing that.
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And I tried the hair color things with a semi-permanent color that will wash out in roughly ten washes. It is alcohol, ammonia and peroxide free. It colored it and covered the gray,but it is a weird kind of blondy brown. I don't think my hair is quite long enough for color as it just looks odd.
I am waiting until the end of October and going to see my salon pro for his expertise!
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Hi ladies,
I hope you all are well. Hope you ladies taking rads are doing well with little SE.
Penny - I hope the new therapist work wonders with you and keep the LE discomfort to little or none.
Silia - Best of luck with surgery tomorrow, you will be in my thoughts and prayers.
Lilylady - Sorry you didn't get the outcome you wanted with the hair colour...that's what i was afraid of..my hair has filled in pretty good so i've decided to go out on a limb and colour it this weekend. I'm gonna use Maria's advise about the ammonia free dye...i'll post pic if i can figure out how.
Kymn - you do look so pretty with the short cut and i love your colour. Glad you are almost done with treatments. I can't wait until March 2012 when I will be done with herceptin.
Maria - Good luck in finding a gym to teach aerobics at..Wow lady, you must really have your energy back.
Flwarrior & Colodisneylover - I was taking Taxol and i had a slight case of neuropathy that begin around my third chemo treatment. It was mainly in my left toes. I am 16 weeks PFC and I hardley feel any discomfort. Now, i do still have leg and joint pains often, that is getting better too. If i could just get my darn finger nails to get back right....
MaxineO - I didn't take any supplements while i was taking chemo i didn't want anything to interfer with the treatments, now i take DIM-plus, vitamin D, omega 3 fish oil, 1 a day multi vitamins.
Fluffqueen - I've attended a zumba class twice so far..i felt like a total klutz too, but i think i'm catching on. Can't wait to go tonight.
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Appreciate everyone's updates as well as your good thoughts and prayers for me with tomorrow's surgery. I'm eerily calm tonight yet keep feeling a tear well up in my right eye - weird. Guess I could cry at a moment's notice... I'll be fine. Anyway, I will post an update as soon as I'm up for it. In the meantime, take care everyone!
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Silia: will be thinking of you tomorrow !!! Hope everything goes well...
I'm 1/3 of the way thru RADS
...a ways to go but getting there...no skin problems yet...just applying Aquaphor and Aloe Vera gel like crazy !!! The morning routine to the radiation center is getting old, though.I'm 5 weeks PFC as of tomorrow...sure would like to see some eyebrows and eyelashes again and my nails are disgusting !!! Still have mild neuropathy in my feet from Taxol...have done some acupuncture, reiki and am using Gabapentin Gel...it really doesn't bother me a lot unless I'm barefoot.
Hope you all are doing well this week...first freeze in Minnesota tonight....BRRRR !!!
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