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  • slortiz
    slortiz Member Posts: 142
    edited November 2008

    Hello Ladies!

    I'm back from a nice little vacation to Baja. Among the tons of email awaiting me was the below, and it made me smile, and the relevance to our BC struggle was so obvious, I just had to share it. (Sorry for some of the strange formatting. I had to remove some nice pictures) I had to laugh too, because although I now have many, many hairs on my head, none of them are much more than 1/4 inch long. Yesterday I wore a small clip on the top of my head just for fun, which is about all that will stick on.

    Regards to all, Sandra

    Attitude

    There once was a woman who woke up one morning, 
    looked in the mirror, 
    and noticed she had only three hairs on her head. 
    'Well,' she said, 'I think I'll braid my hair today.'


    So she did and she had a wonderful day. 
    The next day she woke up, 
    looked in the mirror 
    and saw that she had only two hairs on her head.


    'H-M-M,' she said,


    'I think I'll part my hair down the middle today.'


    So she did and she had a grand day. 
    The next day she woke up, 
    looked in the mirror and noticed 
    that she had only one hair on her head. 
    'Well,' she said, 'today I'm going 
    to wear my hair in a pony tail.' 
    So she did, and she had a fun, fun day. 


    The next day she woke up,


    looked in the mirror and noticed


    that there wasn't a single hair on her head.


    'YAY!' she exclaimed.


    'I don't have to fix my hair today!' 


    Attitude is everything. 


    Be kinder than necessary,


    for everyone you meet is fighting some kind of battle .


    Live simply,


    Love generously,


    Care deeply,


    Speak kindly......


    Life isn't about waiting for the storm to pass...
    It's about learning to dance in the rain.

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2008

    Hi, Sandra!   Well, I'm sitting here smiling ear-to-ear!  Thank you so much for sharing such a beautiful piece!  It's soooo true, isn't, it?!  Life will always be what you make it! 

    Glad you had a great time in Baja!    Deanna

  • birdsong
    birdsong Member Posts: 56
    edited November 2008

    Hi Sandra,

    What a wonderful message from you today. I finished number 6  and  what journey. I loved your line. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain. I have learned and gained soooo much from this journey. Thanks Birdsong

  • birdsong
    birdsong Member Posts: 56
    edited November 2008

    Nursekim or anyone,

    Do you have a good site for information of radiation? Thanks Birdsong.

  • unique
    unique Member Posts: 209
    edited November 2008

    Sandra ~ I loved your piece about the hairs. So funny!!!

    I am really pooped out these days, wondering if it's the red counts taking a beating. Also kind of achy in the back and hips, would that be ye olde Taxotere?

    Feel like I can't budge my carcass from this chair, but my child needs to eat. 

  • rseaw22
    rseaw22 Member Posts: 59
    edited November 2008

    Donna - big congrats!  Taste buds should be alive and well for Tday! 

    Sandra - loved the poem - thanks.

  • nursekim
    nursekim Member Posts: 11
    edited November 2008
    There is some info on www.cancer.gov and type radiation in the search bar.  It has a question and answer piece and a support piece.  Hope this helps.  I need to do some reading there myself.
  • sdavis
    sdavis Member Posts: 11
    edited November 2008

    Love the poem. Made me laugh outloud. Hello ladies I am new and going to start my coctail Dec. 9 I want to thank all of you for posting your struggle as It has really helped me to prepare.

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi Ladeez!

    Okay, is this an SE? I feel like I injured my left index finger at the joint, but I don't remember hurting it. It feels like a sprain, and it *might* be slightly swollen altho it's hard to tell. Actually it happened a couple days ago, I put a bandaid with a straw "splint" to immobilize it because every time I did something with that hand it hurt. It went away but came back again last night, I think I was using it to open a can of cat food and it seemed to get "sprained" again. Other thing. I usually sleep on my right side with a pillow in my left armpit (mast side) and yesterday morning the inside of my upper arm was very sore. Again, nothing visual, it just hurts. Tonight I promise I will sleep on my back, and see if this doesn't help it.

    Any ideas? Any of you experienced this? 

  • unique
    unique Member Posts: 209
    edited November 2008

    P.S. - that was my right inside upper arm that was sore, the side I was sleeping on. This is my good side.

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi, where is everybody?

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi - I'm definitely showing bruises on my inner arm. Will call doctor tomorrow about this. It's stopping hurting, but I'm quite colorful. I was hoping for a note from some of you that bruising is a SE, but I guess you're all coping with stuff this weekend. Ciao until later ...

  • Lili46
    Lili46 Member Posts: 102
    edited November 2008

    Hi Unique...Your platelets could be low and that could be causing the bruising. How many days are you out from your last treatment? I'd let the doctor know about it.

    L 

  • Katie2u
    Katie2u Member Posts: 43
    edited November 2008

    Hi Unique:

       I hope your finger is doing better.  Do you think it could be from the Neulasta?  I know I had pains in odd places such as my wrists.   I think your platelets could be low too. 

       Meeting with a third oncologist tomorrow... can you believe it.  First one... noncaring, smarta__. second one nice... but wanted to put in a port for 2 treatments that are left... I refused... So I am on a third one now who I will meet with tomorrow.  I'm on beta blockers now due to the heart issue so not sure what will happen. 

        I'm reading about some of you and your M&M's  :)    Keep in mind that if you are ER positive, please watch the sweets and avoid sugar if at all possible.  Sugar increases estrogen levels and I was told to avoid all sugar.  (I cheat once in a while) but have been fairly good... ok ok, I had an ice cream tonight since I went to a buffet and there was the machine and the cones.. yum it was good.  But I felt guilty afterwards.   I took a big scoop of pysillium powder in juice when I got home since that is supposed to bind to the estrogen and carry it out.  I have to rationalize here.

        Hope everyone had a decent weekend and a great week ahead.  :)   Katie

  • goldendragonlady
    goldendragonlady Member Posts: 20
    edited November 2008

    Hi Everyone,

    Well this is the week.  I start my treatments(TC X4) at 11:00 on Thursday morning.  My Sister-In-Law is going to drive me, and keep me company if she can get a sub(she teaches 8th grade).  When I had AC treatments I got off work(2:00 PM), and drove straight to treatments so I didn't have to loose another day from work.  Those infusions only took about 1 1/2 hours though.  The TC infusions take 3 hours, so I don't know if they will let me come in laterFrown.  I asked about why the time difference and they said because of possibly severe alergic reactions, they like to give the IV slowly.   I will ask if I can possibly come in later if I don't have any reactions the first timeWink.

    I'm going to have my hair cut short(I just got it to below-the-shoulder length after loosing it to AC treatments in 05CryCryCry) after Thanksgiving, and before it starts to fall out, so I can donate a head full of hair to Locks of Love. 

    Katie--Please don't feel guilty about eating a little sugar.  If we avoided everything that could cause cancer we would only be ingesting H2O!!!  There are a LOT of things that can stimulate estrogen.  As you said, you need to rationalize things, everything in moderation.  I figure the endorpens I get from eating something sweet even out the bad side of sweetsTongue out, and I NEED those endorphens right now.

    Unique--I agree with Katie and Lili.  I would think the bruising is caused by low platelets. 

    Mary Smile

  • threegirlsmom
    threegirlsmom Member Posts: 10
    edited November 2008

    Ok, so I need some advice...

    I have had such minimal SE's that I feel normal by the 3rd or 4th day after treatment.  My question is, should I be concerned about what I am eating, drinking and doing in between?  I have always had pretty bad eating habits.  Not the healthiest of people.  I stepped up the diet when I found out I was going to do chemo.  I am eating better, but I see the junk food creeping back into my diet...is this bad?  Do the effects of the drugs mean that I should be drinking tons of water and eating only healthy stuff? 

    Any opinions out there?

  • LLydia
    LLydia Member Posts: 2
    edited November 2008

    Hi Everyone--

    I'm about to join the party.  My first T/C will be Wednesday 11/19.  Getting a little nervous!!  It reminds me of being 8.5 months pregnant--you know what's coming in the very near future, it's not going to be fun (labor, not the following 18 years!!) & not a darn thing you can do about it!!  At least I have the result of 4 pregnancies (4 great daughters) to support me through this.  Although I find myself wanting not to burden them with the worst of it--they are only 16-23 years old.

    Thanks to everyone for posting all the great info & suggestions--it really helps. 

    One question--I live a long ways from my chemo center & have several errands I need to do in that town.  Will I feel up to errands right after infusion?  If not, it means going the night before.  It sounds like the effects don't kick in that day?

    Thanks to all. 

  • unique
    unique Member Posts: 209
    edited November 2008

    Hi Galz ~ Such dramatic bruising, and the only thing I can think of is I do put my bag over my shoulder on that side, and it hangs there between my upper arm and my body. Or I carried the cat litter box in my arm so I could carry another bag upstairs with that arm (not supposed to burden the lymph-damaged other side). It is just about 9am here in the east now so will call onc first thing. Let 'em have their cups 'o coffee and then talk to me :@)

    Katie ~ so sorry you are having such issues with your oncologists. This is the last thing you need right now!!! But take heart that you are doing something to find the right one for you, some folks don't switch even when they're unhappy because they are embarassed or something.

    About sweets, I think each of us has to decide where we fall on that. It's a balance between tolerating the chemo and eating healthy. We'll all be able to eat really healthy when we're done with this. I used to eat Sweet and Low because I didn't want to use sugar, then once I got the breast cancer switched back to sugar because irrationally was thinking the S&L caused my cancer. I have to get to the Health Food Store and find some of that Blue Agave sweetener someone mentioned a while back.

    Golden Dragon ~ Good luck with Thursday!! I wanted to say to you and Lydia to try to not be nervous. Altho chemo is definitely not fun this particular regimen is not incapacitating by any means. The worst for me is Days 3-5 and I feel like I have a flu. Childbirth and migraine headaches (both of which I have experienced) is A LOT HARDER, so take heart, you can do this.

    Am on hold with the nurse right now and it looks like I have to go in and see the doctor :@P This is the kind of thing, you can keep up most of your regular activities but they keep getting disrupted by the side effects. I have had: a fever of 101, was on Penicillin; heartburn - learned I can't eat nacho chips LOL; aches & pains; Neulasta or Taxotere throbbing in my hips that Tylenol knocks out right away, but the first time I didn't know what the heck it was; a bad cold for a couple days and a dry cough ever since; thought I was coming down with a urine infection or a vaginal infection for several days, but never did, drank cranberry juice for the first and ate more yoghurt for the second; now wierd bruising!!!

    This morning I'm supposed to be doing some paying work and updating my bank book on the computer so I can pay online bills tomorrow. But it looks like I have to run over to the doctor's office instead, urgh. I will make that more palatable by dropping in on the wig and hat lady who is nearby. I need a simple brown hat with a little brim.

    Big time waster secondary to chemo ~ due to hair loss, figuring out a whole new look!!! Your old look doesn't quite work because of the addition of a hat. If you're wondering whether a hat or a wig, a wig might be easier because you don't have to change your look at all. A hat is another bit of color so the other things you wear have to match or at least not be too much with the hat. 

    My favorite hat is the denim bucket with a little brim from headcoverings.com. I have scarves too. Didn't get a wig yet because of American Cancer Society scheduling. They have free wigs, but what good is a free wig if every time you schedule you have to cancel due to side effects?!? And you can't just schedule, you call them and then they have to call you back, several days later. So it's cumbersome. 

    Lydia ~ you won't burden your girls too much. They can help ALOT. I have a 10 y.o. and if I'm truly zonked (Days 3-5) he can make his own Mac and Cheese or a sandwich. He was also heating up my herb packs in the microwave for the aches and pains. 

  • unique
    unique Member Posts: 209
    edited November 2008

    P.S. Lydia ~ You should feel GREAT infusion day and the next day. You crash on the third day usually. So yes, you can do your errands most likely. This is because they give you a couple days of Decadron in addition to what you get in your I.V. Some of us are finding that the directions usually given for this - 2 doses day before, 2 doses day of, 2 doses day following - are not working as well for us because that first day no Decadron, it is like falling off a cliff, you just feel AWFUL. Not usually throwing up, but like you have the flu. Funny in the head, sweating, chills, fatigue, ache all over, stuff like that. This is my new schedule - 2 doses day before, 2 doses day of, 2 doses day following, 1 dose Saturday, 1 dose Sunday.

  • Katie2u
    Katie2u Member Posts: 43
    edited November 2008

    Hi Unique:

        My dietician who has her Phd scared me to death as far as sugar goes.  I am using Honey and Agava (but not fresh honey during chemotherapy.)   I'm juicing lots of fruits every day so it seems to satisfy my sweet tooth.  LIke I mentioned, I do cheat now and then.  It's especially easy to do so during chemo.  I wanted a Coffee Coolata from Dunkin Doughnuts right after my last one and I went for it.  :)

    Katie

  • ilovemykids
    ilovemykids Member Posts: 43
    edited November 2008

    Hi Annie,

    I hope your arm is improving!  Sounds terrible so let us know!

    Lidia,  You are going tio be okay, it is just the unknown that is so scary.  You can do it, and once the first one is finished the countdown to the end begins!  We will be here for you!

    Kim, Eat what makes you feel better!  This is a rough time, so anything helps in moderation!

    I have an iron infusion in the morning and on to my third treatment on Nov 25! 

    Have a good week girls, and keep your spirits up!  We Can Do This!

    Love,

    Elizabeth

  • Lindy58
    Lindy58 Member Posts: 9
    edited November 2008

    Hi Ladies,

    i had my first TC tx on 11/12/08, I had a severe reaction that scared the crap out of me, they stopped it gave me benadryl, Pepcid, steriod and morphine.  Then started it back 1/2 drip to make sure the same reaction wouldn't happen.  My worst side effect so far is bone pain and no appetite.I am alittle itchy and my scalp gets itchy.  Not sure what that means LOL!  My 2nd tx is scheduled for 12/3/08 soooo now I am heading into the holidays... It is true when you come off the steroids you feel like you fell off a cliff.... But I know that we all can do this with strong determination and faith and the support of good women:)  My thoughts and prayers are with you all.  Oh is anyone doing radiation after the chemo... let me know!

    Love to all

    Linda

  • samiam
    samiam Member Posts: 39
    edited November 2008

    Do you think I will remain in menopause?

    Ladies, I'm curious if any of you have been in a similar situation.  I had my first TC TX in early September and had my last Nov. 5.  I'm 47 years old and had experienced a few perimenopausal symptoms prior to my diagnosis but had always had normal, regular periods. As expected, my periods stopped soon after my first TC TX.  This week I'm really experiencing menopausal symptoms.  My hot flashes are coming as often as every hour!

    Do you think I will stay in menopause after my treatments are complete?  ... or is this just a chemopause and I'll go back to my "old routine" as soon as my body has recovered from chemo.  I'm hoping this is the real thing!

  • Brenny
    Brenny Member Posts: 15
    edited November 2008

    Just learned that I will be doing the 4xTC program starting first week of December (bummer).  Am taking deep breaths and working on that Can-Do Attitude.  My treatment center is in one state (my home state) and I work in a different state -- wondering if anyone has successfully pulled that off??  My "intentions" are to do my treatment then short flight the next day to work -- work for 20 days and back for next treatment.  Second treatment would be around 12/22 and I would be home for Christmas anyway.  Am I way overconfident?  From previous posts I am thinking that maybe a Wed/Thur treatment would be best -- giving me the wknd to recover.....I am confident in my doctors here at a major major cancer center and don't want to change that. My oncologist seems to think this plan is doable...

    Again, this is not the hand I want to play - it is the hand that I've been dealt.  I cannot afford to not work--am divorced, pretty much no family to depend on.  I am so sad when you write about husbands/boyfriends actually shaving your heads and making dinners, etc.....I will be doing this pretty much alone (along with your support on this board!!).

    Would be interested in hearing your ideas/suggestions.  Thanks, All!

  • monee
    monee Member Posts: 14
    edited November 2008

    Hi Brenny,

    I just did my first tx 11/12 - 5 days ago (Wednesday).  I thought Wed would be good too.  As it turns out, Saturday, was my worst day. So, you may be fine. I went to work today (Mon), but had to come home and lay down.  I am a tough cookie.  I work through anything, but this kicked my butt. I had been very optomistic about treatment.  So I was surprised to be so exhasted. Best of luck to you. 

    It looks like Lindy58 and I are on the same schedule.  How was your weekend?

  • dlb823
    dlb823 Member Posts: 2,701
    edited November 2008

    Hi, Brenny... Welcome!  Boy, you really have a challenging situation, at least as far as your work is concerned.  You know, it's so hard to predict how anyone will react to chemo, but if your onc thinks it's do-able, that's a good sign.  As you've probably gleaned from our discussions here, many of us have found Days 3, 4 & 5 were the roughest with flu-like symptoms and extreme tiredness.  But there are women who report little to no SE's, and I do think that being busy can sometimes help take your mind off the minor SE's. 

    And please don't be sad about not having a DH or boyfriend right now.  Obviously, if you have a good one, the support is wonderful.  But, you know, if you prowl around this board you will find many instances where a husband or boyfriend can't handle the stress of bc, or is otherwise more of a hindrance than a help.  And even those of us with great husbands worry about what the added stress is doing to their health -- at least I do.  I guess what I'm trying to say is, what may look like an ideal situation when you don't have it, probably also has challeges and downsides you're not hearing about -- if that makes sense.

    If you haven't already, you may want to see if there's a support group you could join in your work location.  I've made at least one great new friend through bc, and it would be one way to fill in the support you don't have from family right now.  Also, be sure that your home away from home is as comfy as possible, so that you can get the rest you need.  You might also want to make contact ahead of starting your tx's with a doctor there, just in the unlikely event you suddenly need one and can't reach the ones who know you.  Oh, and if there's an ACS office there, maybe see what services they provide, in case you run into an unanticipated need.  And we'll all be here for you!

    LLydia... Welcome to you, too, and good luck on Wednesday.  You'll do fine.  As far as doing errands after the infusion, if anything, you may feel a bit sleepy from the Benedryl.  But I didn't have any problems doing errands that day or driving myself back for a Neulasta shot and doing errands the following day.  It's usually around Day 3 when you may start to feel like staying close to home and maybe crawling in bed to ride out what feels like a couple of days of the flu. 

    Linda...  So sorry to read about your scary reaction!  It's stories like yours that almost made me not want to do chemo, but luckily, few of us have experienced anything like you did.  So sorry it had to be you, but from all I've read here and on the August 08 chemo board, almost everyone who has a reaction the first time got their dosages and infusion times better regulated the next time, and sailed through future tx's without incident.  I'm also probably going to do rads -- not entirely sure, but meeting with the local rad onc again next week to make a decision.

    Annie...  Loved your comparison to childbirth!  How're you feeling?  What did your onc say about the bruises?    

    Thinking of you all ~   Deanna  

  • unique
    unique Member Posts: 209
    edited November 2008

    Deanna and all ~

    I'm feeling all right. I went in to the onc office and they took a blood count, and the platelets are okay. The doc also felt that if it were the platelets, I'd be bruised in more than one place. It's all purple and yellow today, so that indicates a "trauma" about a week ago. The wierd thing is, I don't remember banging anything. But I must admit, since I had a kid, I'm very clumsy and have often had unexplained bruises. I was full of aches and pains today, so I took a Tylenol around 2pm and guess what - I feel better! Oh, I also got a cup of coffee around 3pm, and I'll be honest I didn't actually start feeling better until that, LOL! I feel bad because I was waiting for my kid at the bus stop, and I was so cold and miserable and the bus wasn't there yet, that I dodged into the coffee shop that is right there next to it. But somehow I missed him getting off while I was getting coffee, so he called me on my cell in a panic. He says he called a couple times and I didn't answer, poor guy was in tears when I finally realized he was calling me.

    The good thing that happened today was that I found a great hat so I feel like I can cope with the lack of hair. Also a cute hat came from headcovers.com as well. The mainstays for me are the denim bucket hat and this new one, a brown felt wool that can have brim up or down, in a number of different configs. It's cute, found it in a shop in downtown Bethlehem, PA. So if the denim doesn't work with my outfit, the brown one will. I have other hats, the Comfy caps are great but look too much like a turban I think to run around town in. I'm squeamish about the hat screaming "this lady has cancer!!!" Maybe that will wear off as they look pretty cute with a scarf wrapped around them. Ditto the scarves - I haven't quite gotten the hang, I either feel like a gypsy or a Hell's Angels rider. I have quite a number of great scarves, some I've gotten recently and some I've had for years. I can wrap the scarves around the brims of the hats to get a number of cool looks. What else - oh, the Elizabeth hat in red made me feel my head was too small. It is a stunning hat in the flapper style, but my face looks so round and big in it. Hmmmm. It's also a very bright red and I have some red sweaters but nothing as bright as the hat. Again hmmmm.

    Are any of you struggling with headgear? I seem to spend too much time before I go out trying to match something I'm wearing with a hat/scarf/cap and having anxiety that I look too much like a person trying to cover up her lack of hair.

    Maybe we should do a hat/scarf exchange sometime? We could post our pics of headgear that didn't work out and swap stuff. Sandy already sent me a hair halo and a scarf, since she is done done done!!!!!!!! Yay!!!!!!!!! 

  • sherrie1964
    sherrie1964 Member Posts: 37
    edited October 2011

    Hi all -

    Well - it's been almost two weeks after my last chemo and I'm starting to feel a little better every day.  Metal mouth is still there, but MUCH better.  My radiologist ordered a CBC today and I'm still anemic and wbc's are below normal.  I may have to get a neupogen shot - we'll see what the onc. says tomorrow. 

    I've started rads and had 3 treatments to date.  I decided to go the traditional WBR route vs. mammosite/other newer protocols.  My onc & surgeon seemed to think that due to my age and the lack of long term data that I should go that route.  They didn't push me either way, but that's the vibe I got.  Also in order to take advantage of some of the newer protocols like prone board or IMRT, I would have to travel significantly farther, which just isn't feasible for me right now.

    Annie - don't feel too bad about the clumsiness cause I'm right there with you.  I often get bruises and don't remember how......and that was before chemo.  Glad to hear you're feeling better.  I haven't been very creative with the hats and scarves.  I think I will start to because it's going to take a while to get the hair back and it's nice to not have to wear the wig all the time.  I've gotten pretty used to wearing the wig out and just caps and beanies at home.

    LLydia and Linda welcome and best of luck with your treatments.  Everyone has already given you some great input.  What comes to mind is the fluids issue.  I can't stress enough how important it is to drink, drink and drink some more.  Not just water, but other sources as well.  Every treatment was different for me, with treatments one and four being the easiest.  I did not work during treatment, but many women do successfully.

    Samiam - it's hard to say about the chemopause thing.  My onc told me there's a 30% chance of it being permanent.  She said that if I don't get my period for a year after completion of chemo, then I would officially considered to be in menopause, but there's no way to tell otherwise.  I'm 44 and got my period with my first treatment.  Then I had a two week long nightmare of a period with treament #2 and nothing for 3 and 4.

    Best to all - 

    Sherrie

  • slortiz
    slortiz Member Posts: 142
    edited November 2008

    I'm "letting down my hair", so to speak as I am feeling in kind of a silly mood. This is a picture of me with returning--mostly brown--hair, adorned with clips. The picture was taken last week at about 11 weeks post-chemo (and post a couple of glasses of wine). My hair grows VERY slowly, so, don't panic. Yours will probably look better by then. (As they say, YMMV) I don't know how long I will leave this picture up, since I am actually quite vain, so enjoy it while you still can.

    Actually, it's looking quite a bit better now,  just a week later. I may decide to NOT wear my wig for the big Thanksgiving Dinner I'm having here. For one thing:  I don't want my wig to catch fire with all the cooking.

    Hope everyone's having a good week.

    Regards,

    Sandra

  • Lindy58
    Lindy58 Member Posts: 9
    edited November 2008

    Hi Monee,

    My weekend was not that great by Saturday I felt as though someone beat me up LOL!  But so far this week I am tired still have bone pain, but pushing through :)  Probably I hear by the time we start to feel better it's time for next treatment.  I hope that your week is going well, and I will keep you in my prayers.  Still no appetite and not very thirsty . But I am forcing myself to drink and eat at least alittle bit.  Look forward to hearing from you again.

    Linda

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