Starting Chemo, November 2013 Group

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  • Lissy2304
    Lissy2304 Member Posts: 60
    edited December 2013


    lorreymom- my first day with a wig started out fine, until I looked in the mirror and realized it had been riding up towards the top of my head! I forgot to put on the cap the goes underneath it! Good thing it wasn't windy!

  • Bec65
    Bec65 Member Posts: 312
    edited December 2013


    I am SO cranky today. I'm hoping that by getting this all out in our safe forum, I'll feel better and want to post what I'm grateful for later. Not sure yet on that one, so please feel free to skip to the next post; no hurt feelings at all!


    (...in no particular order...) I am so tired of waking up tired. I'm sick of my stomach feeling just enough on edge that I have to take something for it that makes me feel tired. I hate that my tongue feels likes it needs to be scraped every three minutes. I hate that my clementines were so hard to peel this morning. I hate that I don't feel like going for a walk this morning and that's one of my favorite things to do. I'm tired of my removable body parts (even though they look better than the original ones). I'm sick of the sore on my port not healing. I'm sick of not wearing my right bra strap because the sore on my port won't heal. I'm tired of HGTV. I hate that I can't get enough enthusiasm to read the book my good friend gave me. I hate that coffee doesn't taste good. I hate that I can't wait to get into bed at night even though I don't really sleep. I hate thatI can't fully appreciate the fabulous food my husband makes just for me. I hate that even though I love my wig, it feels funny to lie down on the sofa on it. I hate that we didn't take our Christmas card picture at Thanksgiving when my daughter was home and now I don't have that project to do this week. I hate that the nurse practitioner said a lot people feel the brunt of everything by the third cycle and that I am, as if it were an instruction. I hate that I'm cranky.


    To everyone who stuck with me on that rant, thank you! I now am going to go put my wig on (and it had better look good after getting its first washing last night), and go for a walk. You girls are the best.

  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    I really don't know how I will handle the hair thing; I have a few days to go yet.


    My hair WAS pretty long, but then after I had my BMX I couldn't brush it, comb it, put it in a pony tail, or do ANYTHING to it myself, so I convinced my husband to cut it short for me.


    The sad part is, that this haircut, that he gave me, is the GREATEST haircut I have ever had. He had no real idea what he was doing, but he knew how he wanted it to look, and all I've heard since then is "OMG I LOVE your hair that way! It's so cute!" And I agree--it made me look younger, made me roundish face thinner, I even sort of have cheekbones (omg!)


    We're gonna get some hats and stuff either this afternoon or within the next day or so and he's gonna go ahead and buzz it for me, but yeah, I think I might cry. I'm almost sure I will. I've always looked ridiculous in hats, truly I have....maybe it will be btter wtihout hair, but I'm not holding out much hope. So.... with that in mind....we're gonna buy several hats PURELY FOR THE RIDICULOUS FACTOR... I mean, by golly if I'm gonna look ridiculous, I want it to be obvious that I INTENDED to look ridiculous. Fun, goofy, silly hats. Then put some pics on facebook with my ridiculous head in my ridiculous hats. I might even make duckfaces for the pics, who knows? I think if we do that....silly as it is....and get some laughter involved in the whole losing-my-hair-thing, I'll be okay.


    At least, that's the plan.

  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    Oh, and because I meant to mention these things and forgot:


    #1. I am SHOCKED that I have not had a problem with constipation. I've been constipated half my life, it's been an ongoing battle. So before chemo, I stocked up on everthing from Smooth Move tea to prunes to miralax to ex-lax. Guess what. No problems so far with constipation OR diarrhea. It's a miracle.


    #2. The worst side effect for me at the moment is that diet coke tastes awful. I guess that's a good thing; I've been trying to quit that evil chemical drink for a while anyway, but man this week has made it easy. The only thing that tastes GOOD to drink is seltzer water with a splash of fruit juice in it. YUM!!

  • smrlvr
    smrlvr Member Posts: 422
    edited December 2013


    Bec - I hear your rant loud and clear, sister and I am with you!


    Lisa - when was your first AC treatment? Your hair is coming out now? Mine was on 11/18 and hair is still with me and I have quite a head of it. My second treTment is tomorrow. I am a worrier and now I am worried that the chemo isn't working because I haven't lost my hair yet.


    Decided to join DH today for a drive to New Hampshire to drop dd back at school. We are celebrating our 24th adding anniversary today. Tomorrow is the actual day but I will be in treatment.

  • smrlvr
    smrlvr Member Posts: 422
    edited December 2013


    I also have major anxiety once in a while; the worst was when I had my biopsy. My pcp actually put me on antidepressants to help me get through the whole diagnosis process which was a wait for bad news deal as you all know.


    When my hair goes it will be the last straw for me and I know I will not deal with it well. I also cut it after BMX so it would be easier to manage. I think I too will not shave my head right away. I want to see how it goes. I do have a nice wig.


    I got my wig at a salon. Not exactly my color but I like it. The stylist there cut it to look like my style. As far as styling it she said I could use hair spray on it (it is synthetic) but not extra hold. She said to clean it just use woolite after 20 uses. Soak in woolite and roll in a towel then hang dry. I actually purchased a wig care kit from tlc direct. It has a stand for drying, some caps, wig brush and comb.

  • audra67
    audra67 Member Posts: 521
    edited December 2013


    I did it! head is shaved..to 3/8 inch...my 15 year old asked ' if I have any activia' apparently resembles Jamie lee Curtis...


    I actually feel MUCH better having cut it...actually they cut it for me...but it was falling out in clumps this morning and had a bald area in back...so I just Had to do it...


    on the plus side...amazingly quick and easy to shower and dry! Always envied that of my husband...it is just weird...but I'm ok with it..


    God has a crown on my head anyway since I'm His daughter and He has this all taken care of if I just relax and let Him...


    Seems that's my problem, relaxing and letting Him....tired of being anxious and going to try harder to let go...

  • Tammibaby
    Tammibaby Member Posts: 14
    edited December 2013


    FairyDogMother - Thank you. I will check out the link immediately.


    Lisa137 - I tried tums but they weren't much help. I'll try Maalox. It can't hurt. Go ahead and be vain; if you like how it looks and feel -- you'll wear it. Good luck with the scarves.


    Pheb - Welcome. I'm a newby, too. It's so much support on this site. You ladies really make me feel SANE.

  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    smrlvr: No no, my hair is NOT coming out yet. I'm just a control freak who is going to go ahead and buzz it short BEFORE it starts to come out so that it's MY decision to be bald and not chemo's decision. No reason for you to worry! I promise!

  • inks
    inks Member Posts: 746
    edited December 2013


    I just made a headcover out of a t-shirt per American Cancer Society's instructions. Either my head is way big or my shirt was too small because the thing is soooo tight. It's making the little hair I have left itch.


    Sending good thoughts to Wren in hospital, don't give up, you have the strength to make it through!

  • Lissy2304
    Lissy2304 Member Posts: 60
    edited December 2013


    Bec I hear ya! I am tired of not feeling like my old self! I miss her!

  • lorreymom
    lorreymom Member Posts: 149
    edited December 2013


    inks - do you have a link to the headcover from tshirt instructions?

  • FairyDogMother
    FairyDogMother Member Posts: 253
    edited December 2013


    I named my wig, “RITA” it is light red color. I got it before I started chemo and I take her for a test run. I went with the client of mine. When I showed up to the wig place the lady cried said I was too young to be dealing with Cancer. I got it that day. I meet my hubby for dinner and he said, “I didn’t know you were going to color your hair today.” He really thought it was my hair. I’m glad I got it before and wearing it out. It helped me feel more comfortable with it.


    I also named my cancer tumor “Felix” and his offspring “Felix Jrs.” I feel that naming things help you control your relationship with it. Besides nothing is better when your friends make you stuff with DIE FELIX DIE on it.


    This month I am doing the run 1 mile a day challenge. It has been hard with the chemo. I did 1 mile today. I used to run 3 5Ks three times a week, but I did it. I’m totally wiped out now. I figured tomorrow I will walk my 1 mile and make it a 2 mile walk. The walking helps with the bone pain for some odd reason, even on those days that I might need a walking stick or walker.


    For those with children, they will give you the strength you need. I could never have kids and after this treatment I won’t at all. I was a teacher for many years and my former students send me PM via FB and they are so encouraging. It will be hard emotional at times for you when they fight or disagree, but try to remember you get to be a part of the craziness in their lives. It’s just hubby, me, and the 8 pups and 2 fosters because their owner is in ICU for the last month. Today I did find myself yelling at one of the pups. I never yell. I guess the joys of chemo is you get the emotional roller coaster. There should be a t-shirt: Chemo: Emotional Wreck adventure


    It is great that you gals share your stories. They are inspirational for others. It is great that we can share. I know when my mother had BC in 1980 that no one talked about it. I’m glad times have changed.

  • inks
    inks Member Posts: 746
    edited December 2013


    lorreymom - http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks# here's the link, it's towards the bottom under t-shirt wrap.

  • wallymama
    wallymama Member Posts: 146
    edited December 2013


    Nice to hear that most everyone had a good day. For me, it was the best of the week. Had enough energy to change the sheets and wash the bedspread. I always keep a cheapo one on it because with 3 dogs sleeping on it, it needs to be washed a lot. Even had enough energy left over to bathe one of them. Hubby had to do the other 2, but I got one.


    It might be my imagination, but I swear there was more hair in the shower today than usual. Losing it won't bother me. Don't think I'll go for a wig, I've always worn it very short. I have zero talent or patience for hair. My granddaughters won't even let me try to put ponytails in their hair.


    Bec65-Bitch and complain away. We won't take it personally like a family member might.


    Smrlvr- I figure we'll all have something different that will be our last straw. Mine seemed to be not working my retail job on Black Friday.


    And HAPPY ANNIVERSARY!!!


    Lisa137- For me it's coffee. Hubby calls me a coffee snob, whole beans, grinder, real cream etc. Now it just tastes weird.


    FairyDog-I've been calling the mass (ILCs don't exactly make tumors) 'Big Ugly'. Just seems to make me feel better to insult it.


    To everyone who has had a good day YEAH!!


    To those who haven't BIG BOO!! And may tomorrow be much better.

  • audra67
    audra67 Member Posts: 521
    edited December 2013


    I have had a great day and shaved my head, then the big decision was what hat/scarf to wear out...I ended up wearing a wig with hat over it...it is cute and seems ok...


    Tired but going out again in awhile...having way more energy and eating normal things...


    I guess back to normal right in time for next infusion...interesting...:)

  • BigT16
    BigT16 Member Posts: 100
    edited December 2013


    MandyJ-


    I too have the bone pains with Neulasta, mostly neck to my hips. My treatment plan is Adriamycin/ cyclophosphamide every 2 weeks x4cycles; followed by Taxol/Herceptin weekly x12; followed by Herceptin every 3 weeks to complete 52 weeks. This week with be #3 of A/C.

  • BigT16
    BigT16 Member Posts: 100
    edited December 2013


    Lisa137 I too never pictured myself bald either. I was a little emotional with the actual shaving.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2013

    Here is a video link of the t-shirt hat/turban thing:

    https://www.facebook.com/video/video.php?v=126130780852828


  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    Oh yeah I love my coffee too, and I'm also a whole bean and grinder gimme the real thing and lots of it kind of girl. NORMALLY I'd start and end my day with coffee.


    Since my first chemo last Monday though, I just don't really *think* about coffee. Kind of weird, but I guess it's a good thing.

  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013


    hi tambabe! yall been busy...gotya read back! hugggs to all!! will write when I sit...had an ODD....cleaning spurt...gonna regret I'm sure!

  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013


    can only short trxt due to bizarre dpl till on computer later! hugs to all!

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013


    I escaped the 'prison' for a while today and went out with my family to a restaurant. Going out, seeing people and eating good food (not the 'prison slop') made me feel somewhat normal. Even though I was in physical pain, it was well worth it. The only thing was that before I left I couldn't find my nurse to let her know of my plans, and my husband was rushing, so we just left without a notice. When I came I told my nurse about it, then she just gently scolded me for my 'bad behaviour' and I am back to be the 'model inmate'.Loopy


    PatAlameda: People constantly comment how 'well' I look. My usual answer to that 'compliment' is: I may look good, but I may not feel good. Why don't you ask me rather how I feel?


    Bec65: It's OK to let some steam out once in a while. BTW your post brought tears in my eyes because I realized that's exactly how some of my days are. One thing after another that you are so acutely aware off.


    My hair started to shed exactly 14 days after my 1st CT. It's going so far for me in that regard by the book. (Is there some sort of internal clock that these hair follicles follow?)


    So my hair is falling like the leaves in the fall. Strangely, I am not upset by it. Why be upset over something inevitable? Am I upset to see the leaves fall in the autumn? No! Because I know that that's the way it is. I will try to admire the bare branches in the winter time. And then in the spring it will all come back!


    Beautiful, lush, green leaves!

  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013


    had the weirdest kinda "nesting" experience today.....like when preggo and gonna give birth! cleaning housr pre next chemo. ....anyone else done that????

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited December 2013

    Hi ladies.  I start chemo Dec. 5.  Can you just tell me how long the first treatment will be.  I was told 2.5 hours, but I expect longer for the first round.  I am doing a/c.  Thanks.

  • audra67
    audra67 Member Posts: 521
    edited December 2013


    MIkesgirl17- I have had one so far, but we were there from 0930 til 230pm...first blood draw, then see dr, then iv and premeds for hour -two then the actual meds one hour each to 1.5...2 bags...ALL DAY....


    I got some Ativan in my premeds as I was nervous and anxious and all and it HELPED a ton...actually relaxed as they rolled in me..


    and the time flew...

  • BigT16
    BigT16 Member Posts: 100
    edited December 2013


    Mikesgirl17... My first AC chemo treatment took 5.5 hours.

  • audra67
    audra67 Member Posts: 521
    edited December 2013


    I have to add how shocked I was by how crowded the infusion room was, tons of people there. I had planned on reading quietly but hard to do as all were talking and laughing and being loud! I was shocked! It was just like being anywhere else- maybe starbucks...just unreal..The girl in front of me was working on her computer and talking to a 'customer' while she was getting her infusion, she was there when I got there and there when I left still, only in her 20s...


    So I brought books, phone, blanket from home, earbuds, and was just fine and busy the whole time...people watching was amusing too..

  • wallymama
    wallymama Member Posts: 146
    edited December 2013


    Mikesgirl- I'm on the same, AC, and the first one was 4 hours. Surprised me, as I somehow thought it would take longer. I guess it depends on how fast they run things, and if they have an in-house lab for the blood work. My office does, so maybe that's why it was faster. Try to get them to slow the C down, I'm sure going to. Doing that too fast seems to cause a lot of fuzzy-head and headache. At least according to some of our ladies. And I'm sure going to believe them about ALL of the SEs.

  • lisa137
    lisa137 Member Posts: 569
    edited December 2013


    My first (and only so far) A/C took about 3 hours. That is NOT counting the time for port issues, the blood draw, talking to the medical assistant, consulting with the doctor, waiting around in waiting rooms, etc. Just the infusion, but yeah, that was about three hours. We got there at 12 'ish and left at 5'ish.

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