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August 2010...anyone starting chemo besides me?!

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Comments

  • Adey
    Adey Member Posts: 2,413

    Hah!  Yup, I bought poor dh MBTs.  They are Frankenshoes (so are Shape Ups).  (c:  So far so good on the Tamox, but keeping my eye out.  Wonder where that expression came from...?

  • omaz
    omaz Member Posts: 4,218

    Hi Lizzy - I tried my first shiatsu treatment today.  Very good.  I will go again next week.

    I seem to be doing ok with the tam, so far.  The hot flashes were keeping me up too so I finally started taking 3mg melatonin and 4mg chlortrimeton (chlorpheniramine) old-fashioned anti-histamine just before bed.  Somehow that is helping me get more sleep.  I wake up 'only' about 4 times a night now with hot flashes.

  • tex -- Yes, that's sort of what happened to me on the tamox; then suddenly everything totally dried up, literally, down there and I started getting hot flashes and such - and oddly, my eyebrows stopped growing and got thin!  Really, I thought I was in menopause.  However this was also about the time I had that awful anxiety and then my dad passed away and I'm thinking maybe between the stress and the shock, it just shut down temporarily.  So maybe it wasn't the tamoxifen.  Now my eyebrows have grown back like crazy and I suddenly the vaginal dryness went away.  My stomach feels 6 months pregnant - I forgot about this- UGH! 

  • sptmm62
    sptmm62 Member Posts: 527

    Lizzy:  I wouldn't worry too much about the numbness in the thigh.  That is exactly what sent me down my MRI spiral just a couple of weeks ago.  My right thigh from my hip to just above my knee is numb and I feel a deep burning pain in that area frequently.  When all the MRIs came back, the doctor said it was lateral femoral neuropathy.  There is a very large nerve that runs along your hip to your inner thigh and when impinged or damaged it causes numbness and burning in your thigh or hip.  He said it can happen to just about anyone and they are really not sure why.  In my case because I had taxotere, which is known to cause neuropathy, that is the likely culprit.  So, I wouldn't worry yourself sick, it probably is something similar. They can only treat the symptoms, sometimes it goes away on its own, sometimes you live with it forever.  

  • sweeney
    sweeney Member Posts: 311

    Hi all

    I've been following but not commenting too much. My lump finding anniversary is tomorrow, I really do feel like I have a bit of PTSD. Small reminders of that original terror set me off. I guess it's just this time of year.



    CALAMTYKEL- I have the same issue as you...I can barely bring myself to touch my affected breast or underarm. I really avoid it!



    As a pay it forward for karma thing I am off to the newbie boards to reassure newly diagnosed women that they are surrounded by love and support on here.



    Sleep tight ladies, you're always in my bedtime prayers!

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Sptmm: I was just thinking about you!  That is funny that you posted very helpful info for me on that leg business.   I tell you right now, I am totally not worrying myself about much because I am NOT going to anymore docs to start having any poke-around fests!   I have had quite enough this past year!

    I was thinking of you because I wondered how you are doing and how the lacrosse game was.  Also wondering if you are a zumba pro yet!  I really enjoy it...so much fun!   In particular I enjoy doing a better reggaeton bounce every time!   

    Sweeney: good to hear from you.   Glad you are well.  Today marks the day of what should hopefully be the worst year you will ever have in your life.  Sleep well knowing that is behind you!

    All, this is an awful and gross story of CT and capitalism: there was a homeless woman in CT who used someone's address to register her son for school in that town.  She sent him to school in Norwalk and now Norwalk is taking the homeless woman to court to SUE her for what they consider to be her having stole money to the tune of $16000+ from the municipality in *stealing*  education for her son from their town.  I cannot believe how sick this story is.  If I was not sick I would have gone to the rally today.  Now Norwalk is trying to say she is not homeless because they have found out that she stays with a friend sometimes so they now consider her NOT homeless.  I have no idea how this makes her NOT homeless.  ugh...so gross.  So very, very gross.  Even worse they kicked her child out of the school.  This is one of the creepiest things I have heard about in a long time.  Sorry but I had to share!   

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Sptmm: I remembered I was also thinking about you while I was on the treadmill still struggling to even get to a 15 minute mile!!!!   I was also thinking about the galactogram and when it is etc...

    At least I am remembering things again...albeit a bit late but they are coming back to me! 

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Diane Nilan of the Hear US organization is onto this already. Unfortunately she is making her way west to present on homelessness in the far west. She and her buddies will help bring light to the ludicrousness of this situation. If the state had been following the LAW regarding access to education for homelss children this would all be a non-issue.

    I am not only an old hippie but also an old social worker who was there when all of these laws  finally came to be. Now if the states and counties and individual school districts would follow the law we would all be able to stop wasting money trying to keep kids OUT of school. You really don't want me to rant on this topic. Really you don't. 

    Stomach is no longer spilling over. This is good. 

    GInger

  • sptmm62
    sptmm62 Member Posts: 527

    Sweeney:  I hope your anniversary day passes quickly.  I know how you feel with the "little reminders", I have those feelings too.  I was first diagnosed with Stage 0 on April 13 of last year, so I just passed that anniversary.  I was upgraded to Stage IIB after my first surgery and given that news on May 18, so I am approaching that one.  The other day when I went to the oncologist's office, I suddenly had a very sick feeling in the pit of my stomach.. and I could feel what it felt like to be in the chemo room and smell the smells..it was really weird because I had been there before after having chemo and never had that feeling.  For some reason, it popped up at that moment, and really was disturbing to me.  I like Lizzy's take on the whole situation...look on today as the beginning of a new year, and leave the old one behind. 

    Lizzy:  Funny, I did Zumba just the other night.  I have decided that I am seriously "booty shaking" challenged, so I tend to do the step aerobic/kick boxing/toning classes.  Every once in a while I attempt to shake my booty in Zumba just for fun! (I don't know is that the reggaeton bounce...kind of like that Animal House dance where you get real low...only you are shaking your booty all the way down and back up?)  That story is horrible, but unfortunately that is the way things are going in schools today.  One of coworker's kids was beaten up after school the other day, jumped as he waited in front of the school for his ride, and then suspended because he participated in the fight.  Seriously, it was 3 against 1, I understand suspending the 3...but the one who got beat up?? Unfortunately, it seems as if logic and reason are absent in the school system these days.  Really is sad.

    The lacrosse game went well.  They are having a good season.  A little sad however because it will be Taylor's last season.  She will be playing field hockey in college not lacrosse.  There are only 5 regular season games left, so I am trying to get to as many as possible but it is difficult with all these tests and doctor's appointments.  Next big game is tomorrow, against Bay Shore.  They are in third place, we are in fourth.  I have my galactogram at 2 so hopefully I will be done before the game at 4:30. 

    As for that 15 minute mile, with your dedication to exercise I have no doubt you will be kicking my a##, running that mile in no time! 

    Ginger:  Glad you are feeling better, hope you enjoy your visit with your friend.

    Omaz:  What is shiatsu? A couple of girls I know from the hospital went for a reflexology appointments.  Some sort of massage they said was amazing.  They provide one free if you have been treated for breast cancer at the hospital. I think I am going to try it.  

    Have a great day everyone...watch for me in the skies as I head off for my galactogram tomorrow..LOL!

    Debbi

  • omaz
    omaz Member Posts: 4,218
    Debbi - For shiatsu the therapist presses on the meridian lines down your legs and back and moves and stretches your arms and legs.  I think it is related to acupuncture in that it works along the meridians of energy.  I thought it was very helpful to loosen my shoulders and hips.  When I woke up today for the first time in a long time my left shoulder (port side) didn't hurt so I am going back for that help.  I have been getting foot reflexology treatments since last Sept.  They are relaxing and feel really good.  My cancer center offers these services at a reduced cost through their support center.  If you have access I would encourage you to try it.
  • sptmm62
    sptmm62 Member Posts: 527

    Thanks Omaz, I am definitely going to try to find time for it.  I am going to look into that shiatsu too, maybe that will  help with my hip pain.  Hopefully the docs will get the answers they need and I will get a break from all these doc appointments and tests soon, and I can have some time to do these good things!

    Debbi

  • omaz
    omaz Member Posts: 4,218
    Debbi - I latched on to the foot reflexology because of my neuropathy, I think it helps increase the circulation.  The shiatsu might help your hip, yes!
  • jsw19
    jsw19 Member Posts: 212

    Lady I hope you are doing ok after the tornados that went through Alabama yesterday.  I have heard that Tuscaloosa was hit worst and I think you are in Huntsville so hopefully you are safe!

    Sweeney Good to hear from you again.  We are all coming up on our anniversaries and it is a difficult time.  But I like Lizzy's idea that it marks the end of a very bad year and the beginning of a new, better year.  A few days ago my husband asked when the anniversary of my diagnosis was and if I would be "done with treatment" by then.  I have to keep reminding him that even when rads are done (about a week after my diagnosis anniversary date) I still have to start my 5 years of tamox and also finish my year of Herceptin.

    Debbi Good luck with your galactogram tomorrow and I hope you are done in time for your daughter's lacrosse game.  I don't know if I have mentioned it before but my husband coaches men's lacrosse.  Since we are moving this will be his last year coaching (at least for a while, though I wouldn't be surprised if he starts coaching again sometime in the future) so I know how you are feeling about wanting to see the last few games.

    Today was rads #24 of 34 - only 10 more to go!  Tomorrow is double the fun - med onc/Herceptin and rads!

  • omaz
    omaz Member Posts: 4,218
    jsw - I know!  My family keeps thinking I am done too and I keep saying no, gotta finish the herceptin, gotta get my port out, gotta take 5 years of anti-estrogen......
  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Sptmm: good luck with your galactogram, woman!   Also, as for the booty shaking, if you point your toes out a little when you do it and try to use the muscles of your very inner thighs (yeah, the ones we never use!), you will be able to do it.  Just concentrate on moving the upper back and slightly inner thigh area and that will help you arrive at a booty shake!  I know it sounds silly but once you actually start doing it, and you feel those muscles working, you will know you have got it because the muscles used in booty shaking ONLY ever get used for booty shaking!

    Omaz: good for you on the shiatsu!  Just like the booty shake, shiatsu will wake up muscles never used.   You are correct in that people think we are done but it is a 5 year soup-to-nuts event!  The wonders of bc.  As for reflexology, in NYC there were these foot massage places (like 10 minutes) and we used to call them reflexology lite.  It was a wonderful treat!

    Ginger: it is a sick case and I am glad someone from a national organization is aware of it.   How awful especially with the egregious amounts of wealth in the Fairfield County area.  It would have been one thing to tell her she had been found out and to make arrangements for her son to be moved to a different school.  How dare they have her arrested, are suing her and kicked her son out of school?  It is sick.   All these towns are crying about money and the reason they are crying now is because when times were good, they mismanaged and thieved.  Ironic how they are legally castigating someone for their exact behavior.   Like I said, if I felt better I would have gone to the rally.  My heart goes out to that woman.     There was a case earlier this year in Ohio, I believe, where the woman used her father's address to send her children to school in that district.  Now her father is a tax paying citizen from that district so, in that regard, it differs from this case.  In any event, they put her in jail for that!  I signed an online petition for that one.  I don't know what is wrong with the world today but this kind of stuff is atrocious.  

    Good day, all and JSW - congrats on being only 9 away from done! 

  • ckptry
    ckptry Member Posts: 333

    Hi all,

         My computers gone a little haywire so may be on and off while dh tries to fix it. Debbi, I hope the galactogram goes well! Raining here again. We alwaays seem to get jipped out of spring in the NE. It'll be in the 70's and rainy and then will shoot to 90 before you know what happened. yesterday was sunny here but very humid. I just love those spring days with lots of sunshine and cool breezes. All of the dogwood trees are in bloom here so it looks pretty

       Lizy, thanks for asking about me. It's funny, I told my neighbor, who had coordinated some meals with the PTA that I was feeling stronger. She said well, there are about ten of us who are willing to do a few rotations, so lets not quit after 4 meals, do it for Colum's sake (dh):-) So you must be psychic I do still need to work on the help stuff.

    lady, hope you weren't affected to badly by the storms!

    Carolyn

  • Carolyn - that's awesome that they're willing to help - my church was that way for us and on Easter Sunday we found out that one of the pretty Easter plants at the front of the church had my name on it, so we could take it home.  Today a bouquet arrived from a facebook friend - -just wanted to "brighten my day".  Kinda makes you feel like George Bailey - sort of an "It's a Wonderful Life "kind of moment.  "Nobody is poor who has friends. ;)

     I went to the naturopathic doctor today and he did a heart rate variability test on me.  It came out  very low end.  I'm disappointed - I thought my heart was pretty strong :( I came home and immediately made an appointment with a cardiologist so I go later this month.  The ND put me on some various heart building supplements.  I find myself scared and I hope there is nothing wrong.  After having chemo. heart problems can show up months to years later.  He tried to reassure me...my heart rate variability  was actually better than when I first had this test about four years ago when I first went to him with Lyme disease..he tried to point that out.

    Monday I go back to the osteopath for my bloodwork results which are probably out of date by now since my cycle's starting again so I'm sure my hormones are quite different.  The ND mentioned a saliva test that can test cortisol levels, and all the hormones much more accurately -- it costs about $120.  You can get them done on line - order them and mail them back, etc.  There is a good book "What your doctor May Not Tell You About Breast Cancer" about hormone balancing and how bad estrogen suddenly can run rampant and start cancer cells.  I have the book - thinking of getting the saliva test.

     Anyway, I'm just pretty overwhelmed today with this all.  

     Debbi - yeah, I totally understand.  The other day I dumped some beet juice in the sink and it sat in a clear bowl and reminded me exactly of the adriamyacin in the bag....I felt my whole stomach just turn over (and I love beet juice - but seeing it mixed with the water made it look like chemo!)   If I go back to the same cancer center I know it's going to bring it all back again.  It's not even like that was such a horrible experience really - but it's the "whole" thing.  

    I just finished reading Alison Arngrim's (AKA Nellie Oleson on Little House on the Prairie) and she was abused as a child.  Something she said really sticks with me "I learned how to pretend that hours, days and even whole weeks never happened...." 
    I totally get that. I feel that way about cancer - it's so easy to want to be in denial now that (I hope) it's all over and just pretend it never happened.  Does anyone else feel that way?  Yet it's still always on my mind in some way or another....so it's never over.  It's a strange kind of feeling.

  • libraylil
    libraylil Member Posts: 325

    Calmytkel I told my oncologist yesterday that I still can t believe I have cancer. lib ray lil

  • IowaSue45
    IowaSue45 Member Posts: 422

    Hi Ladies, I had a strange night last night. Woke at 1:30 ( which isnn't unusual) but for whatever reason started feeling my bc mx side and I'll be dammed if I didn't find lumps at least 3 in my pectoral area just before it turns into my arm pit. So I couldn't sleep had the major fear of death gripping me again. Called the family Dr. at 8 and was in at 9. He felt them and told me to get to my bs and I go in Fri. at 12. If any of you remember I had a lump removed back in Oct. it was a lipoma. So I am saying extra prayers again that it is anything but the big C. This disease is going to drive me crazy, I was doing so good moving forward and not thinking about it.

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796
    Good evening chemosabes and radicals:

    I hope you are all doing well.

    Does anyone know if Ladyinbama is actually in Birmingham? I know she references Bhama when writing to JSW about her upcoming move but I don't know if that is short for Birmingham. In any case, I hope we hear from her soon as, and I am sure you all are aware of this, several states in the South were hit hard today by tornadoes and Birmingham, in particular, was mentioned.  So Lady, if you are reading, let us know you are ok.  

    Sptmm: how was the galactogram? I hope there was no pain involved and you are doing ok this evening.

    Ckptry: I love your dh's name! What a great, I believe Irish, name! On the PTA friend's idea, definitely ask for help a few times a week. I remember being young and some wealthy woman my mother knew used to have a nanny come over just so she could go to the spa and/or sit on her ass! I offer up that story because, in a moderately related way, I encourage you to not always call when the need is severe and don't feel guilty about asking for some help when you need a little "me" time. Spoil yourself a little bit with this. You are not taking advantage but rather making your family's life better by being able to recognize your needs before you hit critical mass. I am glad you are doing well.

    I also agree, NE Springs are nearly non-existent.

    Texas: where are you these days?  Studying away?!   Miss ya! 

    Calamtykel: that is awful about the beet juice and water reminding you of adriamyacin. It is amazing how we all did just find our way and got through it all. It does not bother me to go near the infusion room at Yale oddly enough but I don't want to have to go back there either.

    On the heart test results, you should be encouraged that the numbers are higher than they were 4 years ago. Don't forget, the heart is a muscle and you work your heart through workouts etc... so don't think if there is trouble down the road it would be irreversible. I don't buy that about the heart. I think if you sit on your ass eating fried chicken and ice cream, and even if you are blessed with the metabolic rate to accommodate that sort of diet without gaining 100 lbs, your heart is going to falter at some point, bottom line. As for you, you eat right, take care of yourself and unlike bc, we know for sure heart problems are caused by diet unless genetic. I know it is tough but try to jump off the worry train about this one.  So, in long, if you had a bad diet AND adriamyacin, I could see your concerns and you and I don't know what the people are eating who are driving up the "adriamyacin can be bad on the heart" figures.   These healthcare issues are very complex and I don't think everyone who has had chemo eats, or takes care of themselves for that matter, like you do so I say you have a very, very good shot at not having anything to worry about.  I would get retested in September or October, when you are 9mos-1yr post-chemo and place more value on those results.

    I went to the doc today, only to find out I have bronchitis, and while talking he said "don't forget you will always be a cancer survivor now." It was weird to hear it from one of the people in my repertoire of doctors who I admire so much. It really hit home with me but still, the entire bc experience to me was sort of like a strange alternate existence. I am usually pretty good with words but I can't come up with exactly what I want to say about this experience. It was sort of like a non-event because, in my mind, cancer would be the thing that would break me, the thing I most feared and after going through it, I had it all wrong; it would not break me and the experience annihilated my deepest, darkest fear. Someday perhaps I will revisit a level of eloquence and be able to better explain how I feel about the entire event.

    Iowa: my prayers are with you. Don't forget, there are cysts and benign tumors(and lipoma as you mentioned...I don't know what that is...will look it up!) and all kinds of stuff that go on in our breast tissue so clearly this could be just another lump or bump. Once Friday is over, you will continue to do good and look forward and not think about it. I am such the eternal optimist with cancer in that I feel they can do so much to help us even though there is no cure. I just know how you must feel as well, however. I would tell you to try to get some sleep but that is probably not going to work so I would take some Nyquil and call it a night! It was funny-the VNA came today and she had 2 nursing students doing clinicals and I told them that, as I took Nyquil last night for the first time in years b/c of this bronchitis, if they did not abuse Nyquil as a teenager, it actually does work!

    In any case, I wish there was something more I could say but my heart goes out to you.

    Omaz: where are you tonight? Perhaps lounging in the Olympic pool in your backyard after a nice shiatsu?! Or maybe you took my advice and are whipping up Celexa treats!? I hope you are having a good night.

    Today I had to have a culture of the wound where my boob used to be because it does not "smell" right. I will know in a few days. I am sure it is going to be ok anyway because I am now on antibiotics for bronchitis. Consequently, I have NO clue how I got bronchitis. It just goes to show me that my immune system, 3 months post-chemo, is still not as strong as it could be.

    Well, girls, I hope you all enjoy my favorite movie tonight = "The Insides of My Eyelids!!!"

    Night all=
  • jsw19
    jsw19 Member Posts: 212

    IowaSue I am sorry you have found more lumps but hopefully they will just be more lipomas or cysts or other benign lumps.  I'm glad you will get to see your surgeon so quickly!

    Lizzy Yes when Lady references Bham she means Birmingham but I'm pretty sure she said she lives in Huntsville now.  There were bad storms all over the south yesterday but from what I have read so far Huntsville did not get any of the tornados.  Tuscaloosa got the worst of it (a mile wide tornado!) and Birmingham also got a tornado.  But Lady please do check in and let us know how you are doing!

  • omaz
    omaz Member Posts: 4,218

    Sue - Glad you got in to see the doctor right away!

    Cal - I learned how to do biofeedback about 3 years ago and I have a couple programs that I practice with.  It monitors heart rate variability and you can train yourself to increase your coherence with breathing and other things.  There are a couple  software programs you can buy.  I like the heartmath one.  I just need to practice more always. I am not sure if that is what your NPis measuring but it soundedsimilar.

    Lizzy - Sorry to hear about your wound - man I will be glad tohear you are finished with that!  I go see the personal trainer for the first time tomorrow.  I have never donethat before!

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Omaz: thanks for checking in from your yacht!   Nice of you to schlep with us commoners!  I hope you enjoy the Royal Wedding!

    JSW: thank you so much.  I was so scared looking at the news of the absolute devastation in Birmingham and all I could think of was her and my friend in TN also.   I sure hope she is ok.

  • omaz
    omaz Member Posts: 4,218

    Trouble is Lizzy, I really need the shapeup session 'cause I can't fit into me royal duds!

  • omaz
    omaz Member Posts: 4,218

    Nah, I'm just watching Bones.  I had to sell the yacht too. Sucks.  But I still have the big pool!!!

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Omaz: alas you are being honest with me!   I thought your personal trainer traveled with you?! 

    Enjoy the training session tomorrow.  You will learn a lot, I am sure and most important, and never forget this, *alwasy* stretch before and after every workout.   I am only pretty sure you know that but don't cut corners on the stretching.  Can you tell I have had some bad experiences?!  Like when I was teaching step aerobics, was running late to class, had been wearing heels all day, and sure enough failed to stretch out enough and pulled my gastroc nearly off the bone.....ugh....it was painful and gross!  Plus I could not do step for 8 weeks...it was a gargantuan travesty.  The muscle curled up like a fusili in the back of my leg and I had to wear a cast for 8 weeks to allow for healing and all I could do was ride the recumbent bike!   It was so very upsetting!

    Let me know how the session goes tomorrow

  • omaz
    omaz Member Posts: 4,218
    sptmm - How did the galactogram go?
  • Ondagrow
    Ondagrow Member Posts: 133

    How is Everyone doing?

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    IowaSue, I am praying for you right now. It must be scary to need to wait even a day to see the doc. A little comfort in what you had before is likliest to be what you have now. Of course it remains scary until proved otherwise. We will all be going to the Doc with you.

    Love and Blessings

    GInger

  • sptmm62
    sptmm62 Member Posts: 527

    Morning Everyone Cool 

    Iowa:  Sorry to hear about the lumps.  I'm sending out positive vibes, hoping for more lipomas!! Kind of sad though, that for the rest of our lives, this anxiety over "what it could be" will be our constant companion.  I know that feeling, and no matter how hard you try, and how composed you are, the worry is in the back of your mind.  Good Luck!!

    Lizzy:  I can't believe you have bronchitis!! My God, can anything else go wrong for you right now.  Well, get plenty of rest. I already know you eat right.  Hopefully you will recover quickly, and I hope the wound culture shows nothing.   Thank you for your eloquent instructions on booty shaking.  I am def going to keep that in my head for the next Zumba class.  I am going to keep going because it is fun and I think as I get to know the dances I will be a little more coordinated. Besides which, I don't care if I look ridiculous, as long as I am happy.  I am not one of those people who really gives a crap about what other people are thinking or saying about me.  I think that is prob why I was able to handle the "losing the hair" issue so well. 

    Ckptry:  Your assessments of Spring in the NE are right on...it is going to go from 60 to 90 one day and summer will be here.  No Spring!  They do seem to be forecasting a nice mid 60s weekend however.  So I guess we will have to enjoy our Spring weekend, that may be all we get. 

    Omaz:  Good luck with the personal trainer, that sounds great!  I have gotten to a point where I have lost enough weight that I think I might invest in some personal training to target the "problem areas" now. 

    Hi Sohard!!

    Iowa:  Been thinking about you with those news reports.  Hope you and all your family are doing okay.

    I am leaving work today at 12:45 to blast off for my galactogram..appointment is at 2:00.  Wish me luck all!!  Have a great day!

    Debbi