April 2015 Chemo Crew... Starting in April? Please join us!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited May 2015

    Thanks for the love, I am feeling it and appreciate it. I wish I was feeling better by now, but I still feel so yuck - just medicine head and shaky, and I'm still so tired.

    Where's KB? Hope you are doing ok . . .

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited May 2015

    Anyone have a pick line for chemo? I have had one treatment and there were issues with the IV. Now, I have 3 more treatments plus many blood work sticks. I have been trying to find out information and cannot find anything. PLEASE offer any help you can. This has to be done in the next few days. Thank you

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    Finally checking in. Sorry these latest rounds are hitting so many so hard. Round 4 was my worst too, but I am happy to report that once I snapped out of it and felt better, I felt MUCH better. This week is EMS Week so I was in charge of organizung an educational open house attended by about 500-700 people...not sure exactly how many... lots of people there. I put in several 12 hour days. It went well. Today was just clean up day, so just 6 hours. I pretty much just went to bed when I got home. Tomorrow it's time to tackle Mount Laundry!

    I have read all of the posts; can't remember to comment on all since they are on a previous page and I read a couple days worth, but I remember a few recent ones!

    Fran, I am so glad you finished FEC!!!! Hoping the side effects go away soon and stay away!

    Andrea, That is a fun wig!!!!!!

    Lynne, Rest up; hoping good days come soon! I hope you get that toe checked. Don't mess with infection.

    Addie, I was not able to do nipple sparing because of where my tumor was, but I did do skin sparing, and I am very, very pleased with how things look after reconstruction...better tan my look before BC to be honest. I went into chemopause after my first TC last time. I just had my ovaries out. Many of the gals in my Sept 13 chemo group have gotten their periods back. I think some have been sporatic.

    kcoralee, welcome!

    gkodad, neutrophils can go up a lot in a day. Mine was 1.5 at chemo 3, and MO said he figures it was below 1 a few days before.

    slv, hope the port feels better soon.

    Rockerwife, love the beanie!

    Littleblue, feeling any better?

    ksusan, how's the grading going?

    Sorry for anyone I've missed. I was listening to "Fight Song" and got inspired to "take back my life". For years I always wanted to runa local race called the Dam to Dam. Inever tougt I would be in shape enough. Then I worked it in 2013 and saw how may people walked. I decided I would do it in 2014. Then I got BC and had a bunc of srgeries ad such in 2014. I decided it would be my "finish line" afterall those sugeries. I ran it and loved it; it is a fun race. I decided I would do it every year. Understand I use the term "run" loosely. If it is faster than a walk, it is a run. Though I fully intend to beat BC for good this time, if for some reason it comes back, I do not want to have missed this opportunity to do it...assuming I feel good after my first Taxol. I plan to walk most of it (it's a half marathon). Really, I think it's my way of saying F U cancer; I will do what I want!

    My song for the day is "Never Surrender". If you read this far...wow. Sorry...feeling wordy today now that I finally sat down!!!!!









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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Congrats Fran! You are an inspiration!

    Lynne, sorry yr feeling rough. Yay chemo! Gimme more chemo! And all together...FUUUUUUUUUUUUUUUCK THIS!!! Love ya lady, you can do it!

    My period went away after the first AC, but no hot flashes. It's weird. It's just gone. I am no where near menopause...

    No nipples here...not sure how I feel about it, but I know I'm happier without breast tissue...total personal decision..

    gkodad, cancer sucks giant sweaty donky...but happy birthday to your husband and you can double up next year!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Get it kbeeee! What's the date on that race? I'll walk the distance with you here in Montana that day if I have to crawl on my lips! FU cancer is right!

    How's my Thursday chemo-sabes doing? I'm sorry I jumped ship for Friday, is anyone riding with me tomorrow? My last dance with the dragon and I want to barf! Mental nausea.

    Ok I'm trying to get my fight on for tomorrow. Here are my songs for it....

    Time of Dying by three days grace...trust me on this one. And crank it!

    Space lord by monster magnate

    highway to hell by ac/dc...appropriate right? It came on when I was heading to surgery...because I'm dark and disturbed it made me laugh.

    Buena by Morphine...cause who doesn't love opiates?

    Animal I have become by three days Grace cause it has a sexy base line

    pepper by butthole surfers because that's what ativan does to me...

    OK chemosabes, let's ride this dragon. I love you all!


    How we gonna get ouR sexy back ladies? Bicoastal synchronous dance parties? Ideas? Not involving boobs or hair...cause lots of us ain't got lol...

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    Little blue, I love, love, love those songs!!!!! So appropriate! My run is May 30. Hoping my first Taxol treats me well! I finally started adding a fee of these fight songs int their own playlist. I intend to listen to it over and over on my run. And. am going to make a very appropriate shirt full of appropriate hashtags

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    I am feeling extremely depressed this morning. Just looked through past photos and I miss my hair. I really do. It was so long. It will never get that long again. I'm not embracing being bald yet. It's hard. I feel so ugly. I try to tell myself it's only temporary but it doesn't help.


    On a good note I got about 10 hours of sleep last night and am feeling much better. My 3rd ac was Tuesday. Hoping to get some painting done and shutters hung on our house today.

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

    Addie, I have a friend whose hair came back just as long and beautiful as before chemo, and you have lots of years ahead of you to grow it just as long as you like.  But I agree - it's hard to embrace "bald" when your hair was beautiful  just a few months ago. So much crap is going on with your body during chemo, the hair loss seems like the final indignity.   I cut mine very short before chemo but it still makes me sad sometimes.  Here I am pre- chemo.  I miss that hair! 

    image

     

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    This is my pre chemo hair. I had cut it shoulder length at dx and the chin length before chemo started. Just shaved it a couple weeks ago. And thank you for your kind words. I hope I am here for many years to come.image

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    Addie, sweetie, it's so hard to lose our hair! As soon as we are done with treatment, we can start sharing tips on hair growth.I just read that depression is worse for us AC folks because the meds kill off our red blood cells and so we don't have as much oxygen in our blood. Lack of oxygen makes us depressed. Well, that and feeling yucky and having had cancer. I know I feel the same as you some days. Just gotta keep repeating...

    it will grow

    it will grow

    it will grow

    big hugs, sister!

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    i know its just hair and it will grow back. I keep reminding myself of that. Only 13 more treatments to go. 13 more. That's it. This AC crap is for the birds. I can't wait to be done with it. My dc told me at my last chemo that I won't need the neulasta with Taxol. Anyone else not have to use it? That crap is horrible. Although to be honest the chemo makes me body more sore than the neulasta. Does it do that to anyone else? I had the neulasta on wed and already feel a lot better.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited May 2015

    Addie, I saw your post and wanted to share, I took Biotin and my hair is growing back like crazy!! I finished my last DD Taxol on 11/25 and I have had my first haircut three weeks ago. It will grow back. Mine came back darker than it was, but it is super soft and wavy. A big improvement than it was. I always had thick hair, but it is really thick now. And my nails look great from the Biotin. Ask your MO, mine suggested it for growing my hair back. It does get better, one day at a time. Take care, Cheryl

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    thank you

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  • AndreaC
    AndreaC Member Posts: 220
    edited May 2015

    Addie: I can totally relate to feeling the loss of your hair. I have always loved my long hair too. Cancer sucks. First I lost my boobs, now my hair. I feel like a freak. But I will get reconstruction, my hair will grow back, it will just take time. Lots of time. My nipples are gone but those can be reconstructed and tattooed.

    I am on Neulasta as well...have only had one dose of it after TC#1 - was generally achy but I also had a cold and temp which could have contributed to the body aches. I had my 2nd chemo yesterday so my next Neulasta will be in a couple of days. It will be interesting to see how I respond this time.

    Anyhow, feeling good after my chemo yesterday. Not sleeping well thanks to dexamethasone - 4-5 hours the past two nights but only two doses left to go this cycle. I'm feeling flushed in the face which happened last time too but no temp. Went for a nice long walk yesterday...one advantage to dex...energy!

    Kbeee: good luck on your run! Wish I was in better shape, I admire all you active folks!

    Andrea

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    Addie, last time when I finished chemo, I took a picture each week on the same day for a year to track post chemo hair growth. I then put all of the pictures on a chart. I will post it as more people finish. Doing Taxol, hair usually starts to grow during that time, so you can subtract 8 weeks from that hair growth chart to get an idea of where it'll be. I do recommend taking pictures each week during that time because when I would get frustrated nad think it was not growing, I'd only have to look back a few weeks and see it had grown. I was always a put my hair in a ponytail and go person and I cringed every time someone complimented my short hair. I appreciated the comments, but I always hated myself in short hair...hence my big collection of ballcaps...which is still growing. I went out to dinner last week on a patio in downtown Des Moines. I had my wig on. 3 different gals passed that were bald. I guessed (totally stereotyping here) that one of them was bald by choice, and the other 2 either had chemo or alopeca. I remember thinking about how no one was staring or even doing a double take, and maybe I should just go bald more often. Then I got home, took off my wig (I only wear it when working, shopping, or out with my kids), looked at my sick-em-out ears and decided I did not have the courage. Maybe when on vacation someday I'll have the courage. I am not very fond of the bald look on me either. It was much easier in the winter; I threw a stocking cap on and out I went. By spring I had some hair. In the summer, it is not that simple, and is much more challenging. I do feel your pain. We all do.

    This is the perfect place to vent though. I am positive about 98% of he time. The 2% when I am frustrated and say something to someone here, the response is usually the same..."just stay positive." I always wonder how many people who have strokes, heart attacks,or have been hit by a car and have months and months of recovery are told to "just stay positive". all. the. time. Of course we all try to stay positive! Even with cancer, life is much happier that way, but there are annoyances and frustrations and it seems cancer patients can't vent them without people thinking they are being negative! I honestly think it's because people don't want to hear the negative or the realities. Rant over! I am actually having a good day. Off to go do laundry and yard work!

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  • mamajencoz
    mamajencoz Member Posts: 52
    edited May 2015

    hi all. I've survived my last AC treatment this week. Now the next journey..Taxol. I'm nervous about this next and I don't know what to expect. I know everyone is different but just looking for pointers.

    thank you,

    Jen

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  • Addie29
    Addie29 Member Posts: 307
    edited May 2015

    I still have some peach fuzz on my head. I was really thinking by now it would all be gone. I love my eyebrows. I have worked really really hard to get them good looking and now those will be gone too- boo whoo.


    And AndreaC I actually don't sleep too awful of dethamexasone. I had my doc lower my dose from 8mg to 4mg and it's made a huge difference and still helps with the nausea. I too only have one more day of it and then I'm done until the next time.

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited May 2015

    Oh Addie, I so understand.I had JUST gotten my hair to it's longest ever and was LOVING IT. now it's gone and I HATE BEING BALD. I do, I cannot embrace it I hate it too much.


    We just have to hang it there, it'll be back.

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  • AndreaC
    AndreaC Member Posts: 220
    edited May 2015

    Mysunshine:

    I have a PICC line and it is vastly preferable to being poked all the time. It's great for short-term chemo (I am only having four doses of chemo total - halfway through, yay!) It does pinch a bit being inserted, mostly from the freezing they have to inject first. The dressing needs to be changed once a week - home care does it on my off chemo weeks. Although yesterday the chemo nurse told me that mine should be changed twice a week because it's been very warm here and I am sweaty and get heat rashes and react to the adhesive. So now I will be having it changed Mondays and Thursdays.

    I can hardly feel the line - the day of chemo the insertion site aches a bit but it's not bad. The rest of the time I barely notice it.

    The big drawback is that you can't submerse it in water, and it needs to be wrapped in Saran Wrap or an open ended bag to shower. And no swimming for me till after it comes out in July (and I get swimming breast forms and a mastectomy bathing suit!)

    Andrea

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  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    i have 4 treatments of TCHP...I may only do 2 more. : (

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

     KBeee, I agree on the "stay positive" comments.  I truly think many people believe that if you let that "positive attitude" go for even a minute, it will impact the outcome of your treatment.  I had a bad day yesterday, and most of my friends kept saying "stay positive - you can beat this".   Sticking with my treatment is what affects the outcome and I will be doing that, and I do believe life will get better - one day at a time.  I consider that staying positive.   But some days just suck and there's no two ways around it.  Some days you want to kick the wall and throw things because this is not fair.    Some days, people just need to agree that it's not fair and it does suck.   

     Addie, we are all with you.  

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited May 2015


    I understand the "stay positive" part, but I am getting so tired of people telling me, it will be OK, stay positive, it's not so bad.....think about the future, etc. Oh, and, you are looking so good. I just want to scream at them Shut the fuck up! And, I am not a swearing person. NO ONE understands except us going through it

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

    If one more person tells me how "great" I'm looking I may have to punch them.  I have no hair, no boobs, dark circles under my eyes from sleeping poorly, my clothes are baggy because I've lost too much weight. my gums are inflamed and I'm pasty pale because any time in the sun makes me burn.   At least say something honest like "good looking head scarf" or "great earrings".  I'm not on a journey (in fact we had to cancel our vacation), things don't always happen for a reason, and what doesn't kill you can still kick the crap out of you.

    Maybe the April group should collaborate on a book called "What NOT to say to someone who is going through chemotherapy".

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  • SueH58
    SueH58 Member Posts: 632
    edited May 2015

    I have a friend who came by last week and told me I looked good, but said that when I look tired, etc., she will tell me so because that's what she would want. I guess SOME PEOPLE get it...

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2015

    SO I will need to add to this to fill an entire shirt, but so far this is what I am going to write on my shirt and wear it on my run. I will gladly take suggestions to add. I need to fill the shirt! I would say it will amuse people behind me...but there will probably not be anyone behind me!

    #Thisismyfightsongtakebackmylifesong #walkingisokaythisyear #canceristheenemychemoistheallybutitstillsucks #evenmorethesecondtime #takingmyApril2015chemocrewonthisrunwithmeinspirit #April2015chemogalsrock #Fightwithoutfear #Sept20 13chemogalsrocktoo #NeverSurrender #nextyearIwillrunthewholethingagain #Ankenyfirefightersarethebest #thisismyfightruntakebackmyliferun #walkingisbetterthansittinghomeonthecouch #I'vestillgotalotoffightleftinme #Iwanttoseeyoubebrave #Fightingcancerislikefightingfire #Assembleyourteam #Fightlikehell #Fightwithoutfear #Adaptwhenconditionschange #simpleasthatbutnotsosimple #youheldmedownbutIgotup #dancinthroughthefire #youregoingtohearmeroar #likethundergonnashaketheground #fightwithoutfear #yesIambaldandyesitsucks #whoyouareisokay #notalone #itsgonnabeokay #youhavemorefriendsthanyouknow #bebravebestrong #youdonthavetogothroughthisonyourown #fightwithoutfear #IdontcareifIshouldnotbegoingthisfar #justenjoytherunandhavefun #breastcancersucks #dontcomplaintomethatyouaretiredoryourfeethurt #fuckcancer #livelifeandlovelife

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  • melb44
    melb44 Member Posts: 130
    edited May 2015

    I agree with you all on the comments. I know people have good intentions but I want to punch them. I get the stay positive and it this is just a blip in your life comments all the time. Well this blimp in my life won't be over until November after I get done with chemo, surgery and radition. When is 8 months of your life a blip?!?!


    Since I got the blood clots from my port I have to give myself blood thinner shots which hurt like hell. My friend who did IVF was all "well I had to give myself shots before IVF ... It isn't that bad blah blah blah."

    I'm doing the cold caps and more and more hair is falling out and it is making me worried it won't work. Everytime I say something to my husband he says "Well you knew some hair would fall out" Some empathy would be nice.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited May 2015

    awesome hash tags kbee! Riding the dragon for the last time as we speak...it's a bad one!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited May 2015

    My book club friend's mother died a couple weeks ago. We had been checking in on each other through her mother's illness and my treatment. She would ask how I was doing, and I'd say "ok", and I'd ask her how she was doing, and she'd say "ok". I said, I know what "ok" means. And she said, "yes, you do". It inspired me to write this:

    I'm "OK"

    I'm going through chemotherapy treatment for breast cancer. My family, close friends, and some close co-workers know this. They all love and support me, and they want to know how I'm doing.

    I say, "Ok"

    I say "Ok" because I can't say, "well, I'm happy that I had a bowel movement today." I say "ok" because I know that my side effects, compared to some, are not that bad. I say "ok" because I don't think you really want to know that I feel queasy, have no appetite, my back hurts, I'm exhausted, and my hair is falling out. And, I say "ok" because I don't feel like rattling off that whole long list. What's the point? There's nothing you can do about it. There's barely anything I can do about it. So, let's just pretend that I'm "Ok".

    Still, it surprises me the reactions that it gets.

    "Well, I'm glad to hear that you are doing well! Keep it up!".

    Hmm. I said, "Ok", not "I'm doing great, feel fine, can't wait until the next treatment!"

    I don't want to go into every little side effect or feel sorry for myself, or, even worse, have you feel sorry for me, but I want you to know that no one is "doing well" through this. We manage.

    "Well, you look great!"

    I get it that you are trying to make me feel better about the way that I look, but what you might not realize is that it took me all morning and most of my energy to spruce myself up to be able to look this way. Not only that, but I don't really believe you anyway. With my bald head, bloated face, blotchy skin (or acne!), and lopsided boobs, I have never felt more unattractive in my life. If you want to make me feel better, pick one thing – my scarf, the color of my lipstick, my shirt, and tell me what you honestly like about it. Your honest compliment will make me smile. And, if you don't have an honest compliment, don't say anything at all. Because, you probably think I look great because you expected me to look like death warmed over, and I am aware of that.

    I say, "Ok" but there are many layers to that comment. Yes, it means that I'm actually functioning at some level, but it also means so much more that's left unsaid. This doesn't just apply to chemotherapy. Your friend or loved one may be responding "ok" because of illness, grief, or depression. Do you want to know how to respond when a sick or grieving loved one tells you that they are "Ok"? Simply ask them if they want to talk about it. By asking them, you will be acknowledging that there is more to say, and giving your friend the choice to say more if he or she wishes to. Ok?

    Lynne

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

    My all-time favorite comment [so far] came from my hypochrondriac neighbor who said "well, at least you know what you're dealing with...imagine how I feel going from doctor to doctor just trying to find out what's wrong".   To be honest, that one was so appallingly inapprorpriate, I laugh when I think about it.  

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  • gkodad
    gkodad Member Posts: 188
    edited May 2015

    Great post, Lynne, and so true! 

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