March 2011 chemo-lounge
Comments
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Jules-Glad your scan results were good! What a relief.
KSMatthews-I hope you are feeling better soon and that you get some answers about what's going on. I'm sure it's really hard to not stress over it.
I have a haircut scheduled this week. It's my first one. Sounds like lots of us are at the poodle fuzz stage and need to get it trimmed. I am not sure what I want to do with mine. I just wish the curl would go away!
Saturday was the one year anniversary of my first chemo infusion. It seems like it was just yesterday. I can't believe how fast the time has gone.
Does anyone else have neuropathy in their feet? I am still taking the Neurontin. I have to wear shoes ALL of the time to help the pain in my feet. I wear Crocs in the house and usually just tennis shoes when I go out to run errands. Since I live in the Southeast, it gets super hot and humid here in the summer and tennis shoes are too hot. Does anyone have a recommendation for a sandal type shoe that is soft and would give lots of support but is still a cute shoe?
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Crocs do sandals I think, and I love my fit flop sandals. Cant say they are that cute, but very cushiony.
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Fluff and Jules-what a relief to hear no bad news. Hard to not go there when you have been thru this.
KSmatthews-glad the knee pain let up but next time maybe see an orthopedic guy. I started this a year ago getting both my knees "cleaned up". Best thing I ever did. Found out about the cancer the day before the first sx. Didn't tell ortho until he did the 2nd knee 2 weeks later because I was afraid he wouldn;t do it. They still ache if I sit too long but it did take care of a lot of the grinding and popping. I also have a drug I was using while on the Herceptin-it was a generic Celebrex. They said it was less damaging to the stomach than the Aleve. Not needing any of that right now thank goodness.
About the hair thing. I have had 2 tiny trims but my hair is still less than 3/4 inch long. I knew the Herceptin inhibited growth but I thought it would take off now that I am not on it. New drugs cause it to thin but still had hoped it would get a little longer. I quit going to the hair thread a long time ago because it pissed me off so much!! I still get called sir if I am not wearing earrings.
B-day party for my Dad was a huge success. Food prices are outrageous. He was thrilled with the whole thing-I was so glad I was able to pull it off. I had my 54th B-day Mar 10-the b-day they said I would never see a year ago.
Had an onc visit last week. They have reduced my dose on the Tykerb due to an evil itchy rash. I am managing the Xeloda way better. Figured out that I just cant eat a full meal at a time. little bits and pieces thruout the day work best. Also hardly any fresh veggies-especially asparagus and broccoli-my 2 favorites. Real shame since the asparagus plants in the garden look like they will have a bumper crop. Canned stuff seems to stick way better. Also no dairy-which is killing me. I am a big milk drinker and cereal eater. Positive aspect is I have lost 23lbs since I started this combo. Other thing is I don't see the onc again for 5 weeks. This will be the longest I have gone without seeing a doc since I started a year ago. We will scan in early April after I have completed my 3rd cycle. I will need much hand-holding when that happens.
Wierd Ohio weather continues. I have flowers blooming that are at least 6 weeks early. I have a huge garden party in early May every year and I didn;t get to do it last year thanks to f'''in BC. Now freaking global warming is conspiring against me-with the bloom cycles so messed up I won't have anything left by then of the spring perennials. If I was more computer savvy I would post pictures. I also planted peas, onions and cabbage this weekend. Might grow-if it doesn;t I'm only out the cost of the seed.
Have a great week everybody
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Lily - Happy Birthday to you, happy birthday to you, happy birthday dear Lilylady, happy birthday to you! It feels good, huh? Next one up - double nickle, Baby, 5-5! I'm so glad your father's party and your food and efforts were a success, too. I wish I were closer - I'd be stopping in to pick up some of that asparagus and broccoli that you will have left over. Sorry to hear about your SE's, but weight loss is a good thing. Enjoy your weird midwest weather while you can, hoping no more tornados up there.
Colodisney - I know, I had my first chemo 3/17 a year ago. Joked that they should dye it green
Hard to believe. It's actually gone pretty quick, I think.My hair is pretty long (relatively). I'm getting a trim again tomorrow. I recommend biotin, if anyone is not already taking it. You can pick it up at the health food store, Whole Foods, etc.
Hope everyone else is doing well. I think of y'all often, I know we are all happy to be one year out from where we were - xoxo
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Colodisneylover: I began taking Arimidex in November and a couple of weeks ago my feet began to ache and haven't stopped. I wear sneakers with insoles, never heels, and they still ache. I will have to look up neuropathy, I don't know what that is. I'm not sure that's what I have. I tend to think the Arimidex has something to do with it. Are you saying the chemo is what gave you neuropathy in your feet?
lilylady, I always love your posts, and btw, Happy 54th Birthday!!! Hey, if the May flowers bloom in April, just move your party up a month or buy lots of cut flowers for the party. I'm a flower lover, too (born in May and named after a flower) & spring is my favorite season. I'm also here in Ohio, so having similar experiences in weather.
supersally, gosh, I haven't seen your posts in a while. I always get a kick out of your avatar.
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Must be the week for hair- I have an appt Wed for highlights and a trim. However, this will be my 4th cut! Mine has grown like crazy since August, but still lots of curls which is why I keep getting it cut.
Colo, I have had neuropathy since mid-chemo last spring and have been on Neurontin all that time. I just quit taking it this week (on my own) to see if I can quit taking it. Mine was from Taxol though. I still have some minor tingling but nothing like last year. I do still get stiff if i sit very long in one place like at a concert and it is worse at night. Not sure if that is neuropathy though, maybe just residual chemo SE's?
Divine, neuropathy is tingling/numbness in fingers/hands and/or toes/feet. Mine at one time went up my calves to my knee and sometimes was just in my big toes. I too wear Crocs in the house, but they are my old gardening ones, a lovely pink. I wouldnt wear them outside the yard! I do think they make sandals but we aren't in sandal weather yet (although tomorrow may be record highs at 75+!)
Lily, hope the Zeloda continues to work for you. It must be frustrating to figure out what you can eat and when, although the weight loss is a nice SE. I lost 20 pounds during chemo, but 6-7 have crept back. Need to get moving again!! And gardening already? Very impressive. I have tulips and crocuses peeping through the ground. Hope it doesn't snow this month. We often get snow in March.
Supersally, we started chemo the same day. I had forgotten that. Kymn did too. I go back to onc on Friday, which is exactly a year later, not by date but by the day. This is my regular 3-mo check orb9 mo following chemo. Have already done blood work and it was good. Vitamin D has gone from 19 (very low) to 52 (not bad) in 6 months. I do have a band under my breast that is likely cording. Therapist says she's never seen it but it is possible. Usually it is under the arm and very rare four lumpectomies. That's me. Therapist did a LOT of stretching and pulling and appears to have broken it up some.
Much less tight and painful. This is also LE related I guess.
Stay in touch ladies. Even though we are past the shock and awe of last year, I still like to hear from you all and know you are all okay. Feeling a bit melancholy after learning of two gals on the triple negative thread that earned angels wings today and Friday.0 -
Happy birthday Lily!! Hoping this year is filled with only good surprises for you. We will all be with you for your April scan - rest assured.
Jules, have you tried Merrell sandals. They give me great support (based on there sole shape) but since I don't know your pain level, I don't know if they're the answer for you.
Sending hugs to all.0 -
Hi Everyone,
Can't believe is has been a year since my first chemo. I was so terrified, but you ladies were there for me. It is amazing how a bunch of people who have never met can be a pillar of strenght for those when we need it.
I read someone was posting about Metformin. I am on a Canadian clincal trial for the drug. I take it twice a day, I could be taking a placebo for all I know. I get regular blood work done and they ask a lot of questions about my diet every 6 months.
As for hair, most days I hate it. I am the princess fido, poodles have nothing on me! It is about 2 inches long and it not even straight when it is wet. I was looking a pictures of me before BC, I looked good! I still do except for this horrible hair.
The tamox gives me achy joints but not so bad that I take anything for it.
Trish
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Lily-HAPPY BIRTHDAY TO YOU!!!! Yay! I hope you have a great one. I think you should just have your garden party early. I admire anyone who can grow anything. I have the worst luck ever with gardening and flowers.
Huskerkkc-How do you feel going off the Neurontin? I'd love to hear how you are doing. I am still waiting for the doctor to call me back. I assume he'll increase the dosage again. My feet hurt all of the time, get stiff when I sit down, and feel like someone hit the sides of them with a sledge hammer. I have been tested, retested and tested again the determination is that it is solely caused from the Taxol. They still call it Neuropathy but they aren't numb. It's weird.
The weather is just plain hot here. I am not ready for it!
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Yep - definitely hair cut time. My DH in his wonderful tactful way made the comment yesterday just as i was leaving for work that it REALLY needs cutting. I said I would get it done when I had time. His comment ,, But we are going out on Thursday!
Clearly doesn't want to be seen in public with me with the princess fido look!
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Happy to get caught up on everyone...struggling with the hair issues but I keep reminding myself I was almost bald a year ago...I think my current look is "Bozo the Clown"...I am still wearing my wig in public/at work...think I'm getting lazy too...I have always liked my wig and it saves me SO much time in the morning. I am scheduled for a prophylactic tubes/ovaries removal at Mayo on April 11th due to my family history....will be happy to get that out of the way. Wish they could do a little liposuction while they're in there !!! I have graduated from the exercise bike to the elliptical (really proud of myself)..my endurance is definitely improving. I do notice when I am really busy and get VERY tired, it takes much longer for me to re-charge....like I need a new battery !!! Next ONC appt mid-April...only complaints on my list are lingering neuropathy in my feet (Taxol) and a rash on my chest that comes and gos...
We're having beautiful spring weather (70's) in Minnesota....planning the garden !!!!
Take care...
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Surprise...Hi girls hope everyone has been doing well and enjoying life without treatment. I cant beleive either that a whole year has passed. One year ago tomorrow on St.Patty's day this chemo journey started for me. My hair too is growing fast and thick but the darn curls drive me crazy lol I straighten them out every morning. Getting ready to take a trip to Mexico next month am very excited to just lie on the beach for a week and relax I soooo need this. Have a great weekend everyone and thank you for all your love and support this past year I think of you all often
Hugs Kymn
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Kymn, it makes my weekend to hear from you. Mexico beach sounds great. You were one of the first to really have hair-I remember your faux-hawk picture. I am still struggling with it. I still have only about 3/4 inch at the longest. I guess the drugs I am on are slowing it because before my hair grew like a weed.
So gladthe year is over. have a green beer and enjoy yourslef!
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Hey ladies,
Yep...today is the date that i had my first chemo treatment. Talking about scared..i freaked out as soon as i saw the needle. I guess reality set in. I am so glad this year is behind me. I'm glad all of us are moving forward and much stronger as we approach our milestone this month.
Lily - Hope you had a HAPPY BIRTHDAY.
Kymn - Good to hear from you...enjoy your trip to Mexico.
Happy St. Patrick's day!!!!
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I too started chemo on St. Patrick's Day. The next day wascmycsins HS musical, which I was determined to go to, even though the Neulasta shot had kicked in and I was running a fever. Tonight was this years production and I was in the audience with a full head of curly hair, not once thinking about cancer. And I felt great! Hope you all do too!
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So good to hear from you Kymn, have a wonderful time in Mexico.
I guess its chemo anniversary time for all of us , mine was 3rd. How much better is this March!
I was expecting a family dinner this weekend, and when I got there all my employees and partners were there at a beautiful restaurant by the beach. They had organised it months ago as a surprise to show their support. They have been doing little things all through and this was the finale.So lucky to have such a great bunch of people
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Well I guess you know why your DH was so insistent about the haircut. Glad you enjoyed yourself!
Happy birthday Lily! And have a wonderful year too. So glad to hear fom you Kymn. And everyone else too. The gang's all here. LOL! Have a great week everyone.0 -
Hi gang -
Great to be hearing all the voices here! Quick question re: exchange surgery. As a recap, I had a BMx with TEs in Sept with radiation on the right side afterwards. I'm slowly getting fills. I'm wondering about the recovery from the final exchange surgery. Can those who had similar chime in re: how quickly you bounced back, how much time you needed off work after the exchange, how quickly you were able to drive again, etc.? I will be grateful for your insights... So glad Spring is upon us!!!
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Kymn: Glad to hear from you! Enjoy your trip and have a margarita or a few for your lounge lizards!!!
Lily: Hope you had a good bday!
Silia: Exchange surgery was not too bad. I was at the hospital all day but I get nausea really bad and I was throwing up. That was the worst thing I dealt with immediately post op. I was off work for a month but my PS is super picky and my job is physical (I was a sales rep and my sales bag was too heavy for me to lift). For a desk job, I have read many gals are back to a desk job in a few days or a week. I was uncomfortable for the first night or two and then it got much better. For me I experienced rib pain (they had to re-do some alloderm) and I had that for a month. I found that other than the rib pain (I guess it was more tenderness - not bad pain) it was not bad. I only took pain meds a few days post OP. I was back exercising a month after - again my PS would NOT let me do anything until 1 month. He was super conservative.
So glad to hear everyone is in a much better place one year later. Boy, how much difference one year can make! I am enjoying the unseasonably warm weather here in Chicago..it has been 80 degrees and sunny all week!!! Usually we have snow in this part of the country at this time of the year. My spring flowers are completely blooming in my new garden! I didn't know we even had spring flowers...that was a pleasant suprise. I love spring and I am able to enjoy it more this year. Hugs to my sisters!!!
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Silia,
After my uni lateral exchange my recovery time was HOURS! LOL I had the surgery on Dec 22, it took the surgeon all of 35 minutes so I wasn't even that sick when I woke up, usually I throw up. Drove home about 3 hours later and had no problem cooking dinner for 14 people on the 25th. I admit I couldn't shovel snow ( but I tried ) but overall it was a cinch.
Good luck!
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Silia-As Timerdog said, the exchange surgery was a cinch! I had mine in 12/29 at 730 am and was home by noon. I had both sides done. The rad side looks a little different, is tighter and a lot harder than the other. My husband swears you can't tell any difference when I am wearing a shirt. The lady at Nordstrom bra fitting didn't think so either. I had some rib pain like Maria is talking about where the Alloderm is at but I've always had that. I didn't drive for a week, only took pain pills for about a day and a half afterwards, and started wearing a regular bra either 2 or 4 weeks after the surgery (I can't remember now). I kept telling people the exchange surgery was the EASIEST thing out of entire year that I had been through LOL! Really, don't sweat it. Do you have a surgery date set?
Penny-What an awesome group of people you work with! The dinner sounds wonderful, as does your DH for helping to plan it all. What a great surprise.
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My new grandson Connor arrived 28th March - life is so amazing
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Congrats Penny!
I had lipo with fat grafting, nipple recon, port removal, and excision of a lump I found under my other arm. PS thinks it is something related to first surgery where it connected with the alloderm and the muscle. He doesnt think it is anything but they sent it out to be sure.
Now just sitting here harnessed into my compression garment. Sore, but tolerable.0 -
Penny Cookson, congrats on the new grandson!!!!!
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Penny - that's awesome! Life is beautiful! You should post a photo so we can see this angel!
Fluff - I hope you are feeling OK. Let us know what the pathology is. I am remaining confident it will be just fine
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Picture please, Gma Penny!
Fluff, hope you get a good report soon!
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Here he is:
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Oh my word, he's is beautiful!! So happy for ya, Penny!!!
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Penny - Connor is so handsome - I see the twinkle in his eye (plus he may have thicker hair on tip than me! My paetner was born on 3/28 - it's an auspicious date!!
Fluff - glad you're recovering and in the home stretch. Let us know as soon as you get confirmation that the lump is nothing!
Thanks to all who weighed in re: the exchange surgery. I'm so glad it should be an easy process. My ps said it might take 2 - 2 1/2 hours total with nipple recon and a little lipo on the side of both boobs. No date set yet - trying to hold off if I can to let my radiated side stabilize.0 -
A song on the jukebox for Connor! If you don't know Cruel Crazy Beautiful World by Johnny Clegg and Savuka, you should YouTube it. Its poignant and upbeat.
You got to wash with the crocodile in the river
You got to swim with the sharks in the sea
You got to live with the crooked politician
Trush those things that you can never see
Ayeye ayeye jesse mfana (jesse boy) ayeye ayeye (x2)
You got to trust your lover when you go away,
Keep on believeing tomorrow brings a better day.
Sometimes you smile while you'r cryin' inside,
Just once you'll turn away while the truth be shinin' bright.
Ayeye ayeye jesse mfana ayeye ayeye (x2)
Chorus:
It's a cruel crazy beautiful world
Every (day first and third chorus)(time second Chorus) you wake up I hope it's under a blue sky.
It's a cruel crazy beautiful world
One day when you wake up I will have to say goodbye
Say goodbye -- It's your world so live in it! Goodbye (first-third chorus only). It's your world so live in it!(x11)
Beyond the door, strange cruel beautiful years are waiting for you
It kills me to know you won't escape loneliness,
Maybe you lose hope too
Ayeye ayeye jesse mfana ayeye ayeye (x2)
Chorus
When I hold your small body close to mine
I feel weak and strong at the same time
So few years to give you wings to fly
Show you stars to guide your ship by
Chorus
It's your world so live in it
[ Lyrics from: http://www.lyricsmode.com/lyrics/j/johnny_clegg_savuka/cruel_crazy_beautiful_world.html ]0
