2005 ROCK-TOBER CHEMO GIRLS

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2006
    Stubbles bug me and look funny around the house. I figure it is ineffective hair at present as no hair in pits and"down below" as they say. So once I see it all growing will let head hair come back. Also eyelashes and brow almost gone, another sign that this chemo is screwing up proper hair growth. Actually with wigs for excursions and nice hats I am perfectly content to let hair come back at own speed.

    A lot of places recommend electric razors only but to me they are perfect places for germs to collect. It is almost impossible to ensure they are clean. When I shave I wash carefully first then use a new razor and have yet to cut myself so I think it is ok.

    I think everyone seems to have a different time frame for regrowth and it sounds like yours is now! That is great.Any pics?

    Temp is normal now, yeah.

    Fists up!
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    No pictures yet but as soon as that hair is like...something others would call hair and my head stops looking like a baby's head (that's what my daughter calls it), I'll show it off. I also told my kids they need to take a picture of me with my scarves and my wig so that I can add it to my journal.
    Truth is, I'm enjoying the fact that just MAYBE my hair is going to grow and remain on my head, but I read here on the boards that after Taxol, some women got surprises and their hair started falling out again. I had that break between AC and Taxol cuz of the hospital resort stop, and so my hair was beginning to grow and then after the first Taxol treatment, the stubbles were falling out. But that stopped. Ya just never know. I still have brows and eye lashes though the brows were thinning and now they aren't. And...guess what... there is hope for "down south" if you know what I mean...I do believe I'm maturing again :-)
    ravdeb
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  • Paula15089
    Paula15089 Member Posts: 373
    edited February 2006
    hope you all get a laugh out of that one...
    yesterday i took a close-up pic of the top of my head with my digital camera to see if there is any activity going on there - BIG MISTAKE!! I've never realised how many moles i have on my head! I also have some weird stray longish dark hair sticking up here and there among my light fuzz. In short, my head looks suspiciously like a desert with an occasional cactus plant growing in places.
    Although i could swear, if i look in the mirror under a certain angle and certain light, i can see a slight 5 o'clock shadow... or is it my wishful thinking?

    wishing a speedy regrowth to everyone!!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    I GOT SOME REALLY BAD NEWS TODAY!

    I was so excited about my last Taxol today. My hubby came with me so we could be together to hear about the next step...Tamoxifen and what my life will be like after chemo, and how much better I will be feeling without chemo etc. But as it turns out, my journey through chemoland is going to continue into a journey through radiationland.

    I am extremely upset, dissapointed, frightened. When he told us this news - I literally thought I was going to break out into uncontrollable sobs. I maintained my composure to spare my already shattered dignity. I do however, know that he is recommending what is best for me and my survival. He wants me to see a Radiation Oncologist and get his opinion. I already booked an appt. with one for next Wednesday.

    I was covinced that because I had a Mastectomy that I was not a candidate for radiation. My Onc said that he once again reviewed the pathology report from my Mastectomy and he said he cannot feel 100% confident of chemo alone because there are very small amounts of unclear margins on the portions of cancer that were attached to some of the breast tissue that the surgeon was not able to remove as it was located too deeply into my chest cavity (my Lobular Carcinoma is invasive).

    I know quite a few of you have been dealt this card and I have felt bad that you had to deal with the radiation portion. I was simply not expecting this. I do however, feel that not knowing this until now helped me get through the chemo portion.

    So, I will be joining you, my beloved chemo girls, through the next phase. (And here I thought I was going to be hanging out on the sidelines cheering you all on!)

    Hubby and I are on a massive search compiling info about radiation, the duration, the sides, etc. I am really concerned about the vacation I have booked. But, come hell or high water, I am going.

    In the words of Paula:
    I don't give a rats bum what they say! LOL LOL LOL Nothing is going to stop me from spending time in Playa Del Carmen with my Mom and my beautiful little nieces. I refuse to dissapoint them. It's booked for April 9 thru the 16th., yikes!

    My hate for this wretched cancer monster lives on - he has once again reared his ugly head. But I must remind myself of what my niece Sydney (she's 13) recently said to me: "Auntie, you will kick the cancer monster's butt, I know you will and I love you because you are strong, I want to be just like you!" How could this not help to keep me going!
    Laura(GTO)
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  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2006
    Shoot Laura. I was thinking how fortunate you were to not require rads. But join the crowd , we will all do it together now. From what I have read , should be not as bad as chemo.

    Give it your all and run as fast as you can from this Monster Beast.

    Fists up!
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  • ake
    ake Member Posts: 684
    edited February 2006
    laura,

    i'm so sorry you were given that news. it must have been awful when you thought you were done with treatment to have to go through the next part. i know sometimes it feels like it will never end. i cried when the radiation oncologist went over all the reasons why i needed radiation...mainly because i had positive lymph nodes. i remember getting upset hearing it all over again...why it was so important to have rads. i knew i needed it, but it was still upsetting to hear it from a doctor. so, i know it was doubly hard for you.

    think of it this way...it's one more thing you get to throw at anyything thinking like cancer. it's one more treatment, one more protection, one more safety. i don't know if you feel like i do, but i get nervous when i think of treatment being over because then...i'm out there all by myself. nothing fighting anything cancer like and i'm on my own. i want as many treatments as they're willing to give me. if they wanted to give me another month of chemo to make sure i was protected, i would say yes.

    don't get caught up on side effects of radiation...as with chemo, it's going to depend on the person...the worst thing i heard was that you're exhausted. that's nothing new after chemo it'll go fast and we'll all keep count for you and get you through the whole thing....i'll be done with rads by then and will help you get all prepared...i start rads on monday! insane!

    remember what your niece said because it's true...you're strong as hell and you'll get through this all and come out stronger....if that's even possible.

    hang in there....get ready for your vacation...you definitely deserve it!

    -amy
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  • Paula15089
    Paula15089 Member Posts: 373
    edited February 2006
    Laura,
    so, welcome to the rads club, even though i know nobody wants to be a member!
    I knew i was having rads from the start despite having mastectomy, due to multifocal nature of my tumour, so i am used to the idea by now. As far as i know, its nothing like chemo, so its a not a big deal for me.
    Are you having reconstruction? Rads can compicate things, just keep that in mind.
    There are plenty of us here moving on to rads shortly, so you wont be alone. We can do it together, just like we did chemo! Have a read on a rads forum, plenty of useful advice. I already started getting prepared, buying aloe vera gel and Sorbolene creme.
    Also had my markings and tattoos done recently, interesting and not at all scary experience.
    Chin up, its just another weapon to fight this beast.
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  • debbie444
    debbie444 Member Posts: 847
    edited February 2006
    Well ladies - we are still plodding on!!
    You know we all have blonde / senior moments ( like coming home from town on the bus and later remembering you actually went in tHe car?)( yes i have done that) , Well, i have just realised that i seem to have been having chemo head for ages. I have been reading everyones news about peach fuzz hair with interest as i keep daily checks on my head too. I was feeling left out tho as i couldnt understand why everyones hair was coming back a peach colour ( blond/ginger) - then it twigged - talk about feeling stupid!!! My hubby swears mine is getting fluffier - head that is not brain, but cant see how that is as only 1 week since last chemo and surely my hair doesnt know there are no more to go??????????
    Oh hum!!
    Debbie
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    Laura,
    Radiation is totally doable! Yesterday was my third day. I was in and out in 5 minutes. Total radiation time (when the buzzer buzzes) is less than 1 minute. I will keep everyone posted on my progress.
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    Oh Laura...what a surprise they planted on you :-(
    Luckily it's rads they are talking about and not some other awful thing like more chemo!!!
    I feel for you since you didn't expect this but hey........
    YOU FINISHED CHEMO!!!!! CONGRATULATIONS!!!! That's a huge milestone!! gotta look at the good things. And thank goodness that the rads are known to be not so difficult. Those of us who are starting can be your cheerleaders, and those of us who will be starting them will look to you for advice.
    Keep smiling and go on that vacation!!!!
    ravdeb
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    Laura, sorry for the continued way we get our information. It seems to me that many of us learn of our treatment on a NEED TO KNOW basis.

    Maybe the doctors figure this is the best approach in order for us to be able to remain calm and upbeat during the treatments we are already undergoing.
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  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2006
    My chemistry this week showed Increased alk phos, I know this can be a marker for boney mets so I am freaking. It is only up a bit so could also be from all the antibiotics I had last week. I have had some rib pain but was told last month that not lilely anything as alk phos was normal. I think I 'll go for another blood test next week and if it is still up will insist on bone scan. Yikes just when one thing gets better something else crops up.

    Injected myself with Neupogen this am ,wasn't bad and didn't hurt so that is good. Neulasta is not given in my province , must be more expensive. Too bad cause I think that is only one shot instead of daily for 7-10 days.

    Storm cancelled school for two days ,had to dig out this am to get to hospital. Car breakdown last week ended up being $860.00, just what I needed...

    Fist up!
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  • ake
    ake Member Posts: 684
    edited February 2006
    mary-ann...hang in there. i'm sorry you're having any type of anxiety. don't you wish we still had those days? when we weren't CONSTANTLY worrying about our body? please keep us posted.

    you'll get used to the neupogen....try doing it on the top of your thighs or on the sides of your thighs...the gluteus maximus that was my favorite spot for it all through chemo. you may have some random lower back spasms after the 4th or 5th neupogen shot...my onc. said that happens when the white cells start reginerating. random.
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  • Serendipity
    Serendipity Member Posts: 109
    edited February 2006
    Quote:

    Jane hope you have better sleep tonight, nothing worse than up all night by yourself. On Decadron high so if Ativan doesnt work perhaps I'll read ya later tonight.



    Second and third nights sleep was better. I still wake up quite a bit, but am able to sleep while the Vicodin lasts.

    I think the bone pain, for me, is from the Neulasta shot they've given me after each Taxotere. At least it's working!
    Jane
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    Maryann..
    I am sorry you are going through all of this and wish all the worries would end for all of us and we would just KNOW that all is well!!!!
    I had neupogen. My husband injected me each time. I hate needles and I should be used to them by now, but I'm not. That didn't really hurt..just hated having it done. I felt okay with them, though. No real bone pains to speak of.
    We also don't have Neulasta here. My doctors said this was the only type of shot available.

    Hope all is well with your tests and that you don't have too much to worry about.
    ravdeb
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    Mary-Anne,

    I am keeping my fingers crossed for you, hoping and praying that you will soon get over this latest hump.

    Take care...
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  • marymelodi
    marymelodi Member Posts: 515
    edited February 2006
    Want to wish everyone a very good weekend, first of all. I hope that if you have been feeling unwell that it will subside and you can have some enjoyment.

    Met my radiation oncologist and her "posse" this week. She is a professor here at the med school and had a resident, med student, and nurse along with her at our first meeting. But, I liked her and since we'll be seeing each other weekly for a while, that is good. She explained everything and my plan sounds like what most of you have been told or have already begun. I am grateful that she wants me to have about 3 or 4 weeks rest between end of chemo and beginning of radiation. I'll probably have the first treatment in mid-March. From now until then I will have to get my port taken out because it is on the same side as my affected breast (right) and have the planning session with all the measuring, etc. She told me at that session I can bring in CDs I want to hear in order to pass the time. She jokingly said, "We've heard everything." I suspect my experience will be like most of yours. One thing, did any of you have a CAT scan in your planning session?

    So, one more Taxol to go next week. I've had more difficulty with Taxol than A/C so I am really, really looking forward to the END.

    Best to all,
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    Well, I have had some sad news. Last night, I got a phone call while sleeping. A friend called to tell me that a mutual friend had committed suicide. I am so sad and angry about this.

    Sad because obviously, he was in emotional pain and turmoil and thought it would never end, so he ended his life. Stupid, stupid, stupid. If only he would have called or told me what he was thinking!!!

    Angry, because so many of us here are fighting to live and he threw his life away. How could anyone treat life as so valueless??? And if he didn't care about his life why not donate your body parts??

    Ultimately, he was sad. Normally, he was thoughtful, kind person. He didn't do it because he wanted to cause pain, he did it because he thought no one cared and that he was all alone.
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  • Paula15089
    Paula15089 Member Posts: 373
    edited February 2006
    terynsmum,
    sorry to hear about your friend.. suicide of one person has a terrible effect on so many people, doesnt it..

    you know, before all this happened, no matter how bad things would get, i would always tell myself - well, at least i've got my health. Now i can't say that anymore. But life is still very precious, we know that now better than ever. But we have already faced the issue of mortality, and most people have not.
    I truly believe, as terrible as it is, if everyone had endured cancer diagnosis once during their life, suicide would not exist.

    Hugs to you!
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    marymelodi,
    Good luck with your last Taxol. I know it's been hard on you but you can celebrate in another week!!!!

    Enjoy that bit of rest between chemo and rads. We will all think about you as you begin the next part of this healing journey.

    ravdeb
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    terynsmom,

    I'm so sorry to hear about your friend. That is very sad and I can understand your anger and sadness.

    Life is precious and it's so hard to understand why others, who are suffering, can't also find the good in their lives, or seek it in some way so that they don't feel so alone and desperate. It's very sad.

    But, you and all these women on the board are such an ispiration and we seem to be such fighters!!! Perhaps our fighting can be an inspiration to those who are stuggling.

    ravdeb
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    terynsmom,

    I'm so sorry to hear about your friend. That is very sad and I can understand your anger and sadness.

    Life is precious and it's so hard to understand why others, who are suffering, can't also find the good in their lives, or seek it in some way so that they don't feel so alone and desperate. It's very sad.

    But, you and all these women on the board are such fighters!!! Perhaps our fighting can be an inspiration to those who are stuggling.

    ravdeb
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    oops..did that twice...sorry!!!
    ravdeb
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  • TracySeattle
    TracySeattle Member Posts: 690
    edited February 2006

    I am starting back to work on Monday. I have been off for 3 months while having chemo. It is kind of scary, trying to go back to what was once "normal". I will be working 6 hour days at first and then going for my rads once I get the initial simulation appts. over with and find out when I will start. Anyone else just started back to work or planning to? How is it going? Were you able to get back into it and leave some of the cancer behind? That is kind of what I am looking forward to--something else to think about!

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  • marymelodi
    marymelodi Member Posts: 515
    edited February 2006
    terynsmom:
    How sad for you and your friend. I agree with all you sentiments about life and the aloneness of suicide. It is heartrending to know that someone can feel so alone that permanent aloneness seems like the only solution.

    Hope that you will be able to enjoy happiness in your memories of the friendship at some time in the future.
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  • debbie444
    debbie444 Member Posts: 847
    edited February 2006
    Tracy - i am due to go back to work on Feb 15th - I have been off since May! I am hoping to work through rads but i only work parttime so it depends on appointment times. I am looking forward to it but also dreading it as my brain seems to have slowed!!
    Good Luck
    Debbie
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2006
    THANKS GIRLS for all your replies - I'm off the "pity-pot"!

    I am feeling better emotionally, and have resigned myself to the fact that I will just have to do what the docs say. I can't wait to be back in control of my life. Thank you, thank you, for the positive advice and words of encouragement, I really appreciate it.
    Paula...
    No reconstruction possible for me. I had an implant expander put in during mast. but had it taken out during Axillary Node Disection because I couldn't stand the pain. It was rubbing against a rib because my chest cavity is very small (although cancer found a way to squeeze itself in). I was quite upset with the realization that reconstruction will never be possible, but with having to have radiation - maybe I'm better off.
    Terynsmom,
    Sorry about your friend. I hope he's at peace.
    marymelodi,
    Congrats to you on your last Taxol next week! I too, had a worse time with it than A/C. Looks like you will be the first of us to have the ol' port taken out. I hope I'm not far behind you with that one, as I can't wait to kiss it goodbye! Can you let us know how it goes? Thanks.
    maryanne,
    Happy to read you're doing better.

    I hope everyone is having a great weekend.
    Laura
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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    Just wondered... does anybody get this jittery, anxious feeling on Taxol? I feel like I've had too much coffee to drink only I'm not drinking any coffee and have been staying away from chocolate because of this jittery, restlessness I feel. Not even sure how to explain it, but I blame it on the Taxol and wonder if anyone else felt this that was on taxol...
    ravdeb
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  • Graycie
    Graycie Member Posts: 839
    edited February 2006

    Ravdeb, Yes, I have experienced that feeling. I was wondering if it was from the steroids. I stopped coffee, sugar and all caffeine to see if that would help. I especially have the restless legs at night when I am trying to go to sleep. I didn't have this problem before taxol so it has to be the taxol. It is 2 weeks since my last taxol and I am feeling calmer. Graycie

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited February 2006
    I remember you saying you had the restless legs at night. I don't have that but this jittery feeling is making me very irritable. I have no patience for things..It makes me jumpy! I guess it is the Taxol.
    I thought it was the steroid that they put in the IV before the Taxol. I don't take it other than that IV. They lowered the steroid to half the dose and I still have the same feeling all the time.
    Glad you are feeling calmer. I guess I'll need to wait this out...6 more weekly treatments.
    thanks graycie,
    ravdeb
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