Starting Chemo May 2008

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  • drcrisc
    drcrisc Member Posts: 836
    edited July 2008

    I have to just say, I love this little non-bc conversation we've got going.  (But I don't want anyone to feel that can't bring up bc issues, either!!).  I'm really enjoying getting to you all of you better, so I'm going to add to my little biography.  (I'm feeling a bit better, can you tell?)  And I just also want to add that no one is boring - I could not stay home full time because then I might go crazy myself!  And, Otter, my little state job is definitely my way of having job security.  Sometime, I could tell about the 8 federal lawsuits that maintain my job security...

    So, just to add to the mix, I was born in Las Vegas.  Yep, hot, dusty, windy, slot--pulling, card-hustlin' Vegas!  It amuses me, because most people find this more interesting than my job!  The most frequently asked question:  "What was it like to grow up in Vegas?"  My answer:  "I can't really tell you because I didn't grow up anywhere else."  My dad was musical conductor at the now Bally's (original MGM) hotel and conducted one of the only shows of it's kind left on the strip "Jubilee!"  My mom was in a show for awhile (not as a nekked showgirl) but as a singer.  When I was 5, she quit that completely and started teaching singing in our home.  She taught mostly the "boy" dancers and then developed a specialty for teaching young children.  Ironically, my older dd, who has a very nice voice, will not take a voice lesson from Grandma to save her life!  It was actually a great time to grow up there and I got to meet some really legendary people like Sammy Davis, Jr., Glen Campbell, the Smothers Brothers (I'm showing my age, aren't I?) and Ziegfried and Roy.  They actually started as a small act in one of the production shows and my dad knew all their "secrets" (because of the music) but he never told us!

    My...I don't know where all that just came from!  Apparently, I am on a reminiscing roll!  I didn't get any more meds, but the nausea did get better today.  I'll probably drag myself into work tomorrow and come home dog ass tired (that was for you, Sue)! 

    Roxi - I can't help you directly with your question, but I'm sure someone can.  I would say search the surgery boards or maybe post your question there.  I think there's also a section just for reconstruction - they might have some good answers.  I hope you find what you need...

    We didn't take roll call for this week, so I'm wondering who's up?  I know Eddie and Kristy (both Thursday?) but that's all I can remember right now.  Holla if you're bellying up this week!

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited July 2008

    Christine,

    I'm up on Wednesday. By the way, LOVE VEGAS!!!! And I'm so glad your feeling better. I'm poking around the boards to get my answer. Thanks. 

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  • rock
    rock Member Posts: 1,486
    edited July 2008

    I'm bellying up for some Taxol-love on Wednesday.

    Cris, are you feeling better?  Perhaps you are feeling like a rhinestone cowboy? (da DUH duh) 

    [By the way, I'd like to nominate Cris's bio as the one that most appears to have been written while flying high on chemo.  How frigging interesting is her childhood? Who KNEW?!  Awesome.]

    Re: raisin bread at the Pentagon. I wonder how I'd have lasted working at the DoD were it not for the raisin bread (and the all you can eat salad bar).  We also got a $5 gift certificate every Christmas that we could spend at the shops in the Pentagon. I used to buy my Christmas lights there.  A voice of experience:  When you have hair, do not get it cut at a hair salon in the Pentagon unless you want to come out looking like Janet Reno or one of the Joint Chiefs of Staff.)  I didn't exactly "blend in" at the Defense Dept and got a lot of good-natured teasing from the higher ups along the lines of "If you had it your way, we would be the Department of Peace, Love and Harmony"... So true.)

    And Jeano -- I remember when we got our first p.c.s! Up to that point we were on a Datapoint mainframe system.  As a low-level flunky, I was charged with making coax cable and running it through the ceilings.   I was happy because it meant that I got to wear ripped up jeans to work every day!  Like I said, I didn't exactly blend...

    Here's to hair on scalp -- hair-ray! 

    Roxi, I'm sorry that I'm of no use to you.  Zilch. Nada.  (Have you used the "search" feature to search the various threads? It's a little clunky but it might help.) 

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Cristine,

    Wow.  Glad you are feeling better!  And flying high on chemo is the best of all possible descriptions!

    I am feeling better tonight, but have had another of those weepy days...I hate that the worst of all the se's, because it seems to not GET me anywhere, you know?  Just a big soup of swimming in sadness with no resolve except to get it out, which I guess is good.

    rock,

    I never fit in either.  I couldn't afford college, so joined the United States Navy and had my 19th birthday in boot camp.  All through my four years in the military I received excellent ratings for doing my job of air traffic control, and failing scores on "military bearing".  I just couldn't care that much whether my seams were straight or even the right color!  Luckily, Ronnie Reagan fired all the air traffic controllers six short weeks before my enlistment was up and my job interview consisted of them taking my pulse...it's been a little bit easier fitting in at a federal government job but still not a perfect fit.  I think there is still a second career out there for me, and I think it will have something to do with women giving birth.  I was always fascinated by the process and I was really good at it and I just think you are blessed to get to be in the room when a child is born.  There is something called a labor doula which is basically a paid coach who knows pain management techniques and helps to process all the information for the family, maybe that's what I will do.   Strange to think of going to college now at 50, but why not?

    Hope everyone has a good restful night's sleep tonight--off to bed early again for me.

    Love you all.

    Sue 

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    Rock~ you got hair already coming in????? That's fabulous! I stare at mine daily and hope for one little extra hair to peek thru what I have left. I have about 5-10% left at the moment and it's all about an inch tall. And I say tall cause it all stands straight up. Alot like our little friend below only he has more hair than I do.

    I start my taxol, bimonthly, this thursday as well.

    p.s. I picked up my udderly sMOOth the other day..... did you know that it is also a cat repellant? My kitty climbed up on me for her nightly scritch, took one sniff at my hands and took off. One nite without a kitty hair stuck up my nose LOL

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Sable,

    But he's so cute!

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2008

    Roxi, since you are node positive... you had rads, right? They say since I am node poss. (1-3) I will need rads.You almost have my exact profile...WOW.... But you had impants and expanders... tell me more :)

    Love and peace,

    Laura

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  • ellenoire
    ellenoire Member Posts: 674
    edited July 2008

    Fit in... HA! Pas moi! Gave up tryin' at about 13 I think. Wept my way to 30, and finally fell in love with myself. 

     Sue, being a Doula would be cool!!! Not for me, but it is a cool thing to do. The money is good, the rewards are great ( if you actually like people, and babies and such)

      I am going to make my bed with clean sheets and head to bed, I have to work tomorrow and we got tix to the theatre tomorrow. It's gonna be a long day. 

     Noelle

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  • drcrisc
    drcrisc Member Posts: 836
    edited July 2008

    Rock - Thanks for the nomination and I think I was flying high after chemo 'cause I was just so glad not to wake up with a nagging headache or feeling like my stomach was going flop over on it's side.  And not so much like a rhinestone cowboy as I'd like to save a horse - ride a cowboy!

    Sable - That picture is hilarious!  And do you really have to do Taxol twice a week?  That just sounds mean!!  By the way, I miss your pipe-cleaner curls, girl. 

    Sue - The Sueper Doula!!  There's a super power for ya!  "Able to leap tall doctors in a single bound!"  I think you would be terrific at that.

    O.K., I'm starting a list ("and checking it twice"...wow...what will Cristine be like when she's on steriods?!).  If anyone's on for tomorrow (Tuesday), please let us know.  I'll try to post something akin to a list tomorrow afternoon.  Maybe I should sleep now...

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited July 2008

    Laura,

    No, right now I have just the expander. We're planning on doing a trans flap when its time for the swap surgery but if I don't get rads I may opt for an implant. Still deciding. I'm going to check again tomorrow when I'm there for treatment about the radiation. If I get the rads, my PS may still do implants but we would need to wait longer to assess tissue damage which doesn't occur in all cases. There's a few other ladies with our profile. Just started herceptin last week. So far, everythings going well. Feel free to send me a private message if you have more questions. Good luck to you.

    Roxi 

    P.S. Sable, that was my hair up until Sunday....HA! I'll be with you for taxol or taxotere tomorrow, I just can't remember which one, frigging chemo brain...Argh!

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  • rock
    rock Member Posts: 1,486
    edited July 2008

    (Quick clarification -- I was commenting on Linda's hair growth, not my own.  My eyebrows are busily falling into my eyes.)

    I highly recommend the documentary, "The Business of Being Born." Though maybe AFTER cancer is behind us. I found it a very moving doc, but hard to watch a womansy-documentary about life and health and strength which emphasizes all that is (can be) natural about women when I was feeling like a toxic waste site.

    Eventually, though, I've concluded that while chemo = chemicals (Pacific Yew or no), the friendships I've developed and strengthened the last 7 months are not only natural, but life-giving, and powerful and beautiful.

    And yes, if I had hair, I would probably poke a daisy in it right now.  "You are a child of the universe, no less than the trees and the stars..." (Does anyone remember Desiderata???!)

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    opps that was supposed to say bimonthly... i swear my fingers type on their own somedays

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Rock,

    I think you are right. It's worth the chemo to have found the friends. There's definitely something we can all give each other that no one else can. It's priceless, and it is what has held me up so far.  No question about it. 

    I am really grateful.

    Love,

    Sue 

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  • otter
    otter Member Posts: 6,099
    edited July 2008

    Sable, how did you get ahold of my baby picture?

    Seriously....  tomorrow, my dh and I are headed upstream to visit my family.  We'll be there slightly more than a week, leaving the trip open-ended so we can stay longer or leave sooner, depending on how things go. 

    One of my obvious concerns is how my mom will react to my "chemo look."  Her mom did not have chemo--it was a very long time ago when she was dx'd with BC.  She had a radical radical mast and high-power rads, and was "cured" (really).  So I don't know what my mom will do when she sees her daughter with no hair, no eyelashes, and hardly any eyebrows.  (Heck, the brows could be gone by then, too.)

    OK, I'm getting to the hair thing.  Right now, the small amount of hair I have is standing straight up, just like in Sable's pic.  That's not my new hair, which is still microscopic--it's the remaining fringe/fuzzy hair I didn't shave.  My mom has a photo of me at a very young age, standing in a crib with a goofy grin on my face and my hair sticking straight up in the air.  She loves that photo.  I, of course, would pay big bucks to have the negative found and destroyed.  One of my concerns is that she will immediately notice the resemblance between my current hairstyle and that ancient baby picture.

    Oh, well.  If my mom can find some comfort and maybe some humor in all this, I guess that's a good thing.  One thing's for sure--y'all won't be needing to see any pics of me here, since you can just refer to the photo Sable posted and get a general idea.

    Roxi, have you tried posting your question about the timing of the exchange surgery over on the Reconstruction board?  I don't have a clue.  I declined recon, thinking it would be so much easier if I just skipped that step and got on with my life.  Of course, chemo was inserted into the equation at the last minute.  Still, I don't regret turning down the offer of immediate recon or a tissue-sparing mast.  At my age (56) and my size (34B/36A), it just wasn't that important; and it's very easy to find comfortable breast forms for smaller boobs.  (Now, if I could only find a comfortable bra...)

    Speaking of small boobs, did anybody notice the post by SveaHorton on the "Just Diagnosed" board?  She has had 3 excisions and finally needs a mast.  She was going to have an expander put in, but her PS told her there was no such thing as a breast implant for a size-A breast.  She would need to go larger, which meant her remaining breast would need to be "augmented" so it would match the new one.  She likes her A-cup breasts and didn't want to have unnecessary surgery on the good side.

    So, is there anyone besides me who thinks it's ridiculous that the plastic surgery/fake boob industry can't provide an implant for an A-cup breast?  To put a voice to their thinking:  "Who would ever choose to have a boob that small???"

    Maybe I'm too close to the issue.

    otter

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    Otter~ does this mean we are twins????

    The PS that I talked to told me I HAD to go down to a b/c cup and couldn't match a d to my good side. And they want to take down the good side as well. That is one of the parts that stopped me... ya I'd like to have perky boobs one time in my life but to what risk on the good side. This may be TMI but I kinda like having at least one nipple with sensations. I can't imagine they can't do something to make a "a" cup. Shoot I'd have them even suck some fat out of my butt-butt and stick in that area if need be.

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  • sueper13
    sueper13 Member Posts: 1,224
    edited July 2008

    Sable,

    You are the first person outside my family I have ever heard use the expression "butt-butt".  That's what we called it when our kids were little---made me laugh out loud to read it just now, thanks.

    I am also undecided about reconstruction.  When I was first dx, my intentions were to have the mast on the "bad" side (left), which I did, have chemo, which I am doing, then have a prophylactic mast on the other side with reconstruction then, but I don't want implants.  I'm leaning toward the DIEP flap, IF i even have recon, I am wavering on the prophylactic mast because it is nice to have one nipple with sensation...I'm in the middle of drug-laden chemo and still have to have rads...I basically don't know what the hell I'm going to do. Luckily I don't have to decide right now.  I think my first reaction was to give up all the body parts I could to feel safe but I am realizing that I still won't feel safe, in a way, ever.  I am hoping that feeling will get less with time, and I am starting to realize that all this worry will not affect the final outcome, but is ruining the moment in which I am doing the worrying.  And that that's all I have control over, is what's going on internally, emotionally.  Anyway, I'm a small 'C'--and I'd like to be able to look normal in clothes, sure, but as you said at what cost?  I'm thinking I may end up staying flat on one side and actually being okay with it long-term--and I can put the fake one on if I want to, or not.  

    I was standing in the shower this morning and I just felt a wave of, this can't actually be happening to me, I didn't really have breast cancer, I'm not almost done with chemo, this can't really be real.  Does that ever happen to you? How can it still seem so surreal? The last four months have been some of the hardest of my life and I have gotten many good gifts, too, but I still on some level can not believe this is happening. I always felt I was lucky and charmed, childhood was a bit difficult but once I became an adult it was like all the obstacles just fell away, marraige, job, children, I've gotten everything I wanted.

    Sorry for the ramble,  Better out than in.

    Sue 

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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008

    Wow. You are amazing. I admire each of our paths as they are unique and our own. Christine,  your nephew can call anytime...206 938-3847 but you better give me his name so I'll know him. We'll feed him a homecooked meal any time. Also, I plan on getting a bunch of us together some day for a major mahjong teaching and playing time.

    Sable, We are taxol virgins together. I will be thinking of you. Let's check in when it is all over. Like many of you, I am quite worried about it. I am taking steroids up the yin yang the night before and the morning of . . . which is coming soon (Thursday). 

    Noelle,

    Hebrew lit, eh? Did I tell you my mom is Israeli and my dad spend quite a long time in Palestine? BTW, do you happen to know Rachel Grynberg or Terry Epstein...both Middlebury grads but they finished in 1983...couldn't tell if you started in 85 or finished. If you finished, you might have crossed paths ...who all did you read along the way before you blew off that major?

    Question for all of you....my joints (wrists and ankles mostly) are still doing a number on me. Also, my left ankle is swelling like one of the old ladies....adema maybe? I have never been a water retainer .... is this the beginning and if so, why just the left ankle? Anyone else have swelling ankles or aching joints? Should I be concerned? I am NOT stopping chemo again so I am not calling in the docs on this one. My eye is no longer gunky (thanks for diagnosing that one for me, Roc); my shingles are a thing of the past; chemo number four, here I come.

    I love hearing about horses and partners and paths and how we all ended up where we are. 

    One thing I learned long ago, but this makes me learn it over again, is that whether we got degrees and post graduate degrees or we chose to start our own businesses or raise families or try to do a lot of those things; whether we chose to marry or partner or divorce of stay single; whether we chose to change careers or manage others or try to manage ourselves; by the time you get to this diagnosis, our wisdom (both individual and collective) carries us a long way. Formal education is just that -- it doesn't make anyone smarter -- it is just a path. Going out on one's own at 17 takes more courage than going to our cushy universities. Changing careers or being forced to change (Adrienne) when Seattle crashed opens new doors. We are quite a group. I have posted four photos on my blog today of our Susan Komen race. One is with my main cancer bully, Dottie, who turned me on to this website as she had bc a year and a half ago. One is with another survivor, Joanie, who is now in stage four with bc on her lungs, but totally hanging in there. One is a team photo of the 32 who walked and raised $9800 and one if of just me, but if you want to see an overweight, but happy camper, google eddie westerman. No pressure, but it's bigger than the avitars. 

    Enough rambling for now? Any other taxol advice for Sable and me? I am most worried that since I mostly sailed through A/C that taxol is going to whip by (*&. See, I don't cuss unless it is highly necessary as it was with shingles. love to all of you. Ciao. 

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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008
    Wait...I forget what udderly smooth is for...can you guys remind me? I only have until Thursday to find it. Was it a taxol helper? Rock....? Sable?? Anyone?? Surprised
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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008

    PS

    Hope the wednesday infusions went well for you...sorry I keep posting. I am NOT flying high. i am actually kind of feeling low and worried, but this is what I would do in real life...just keep babbling. Bye...really. That's it. No more. 

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  • lewing
    lewing Member Posts: 1,288
    edited July 2008

    Sue, I totally hear you on the surreality of it all.  And there's something about standing in the shower that brings it on.  Not so surprising, I guess: we're standing there, doing something totally ordinary, and then we look down - or reach over to lather up - or whatever, and BAM.  There's that nothing where a breast used to be.

    I don't think I ever for one one moment forget that I have cancer, but there are definitely times when I forget I have only one breast.  The shower is NOT one of those times. 

    It's real, it's not real; I'm used to it, I'm not used to it; I was diagnosed a lifetime ago, I was diagnosed yesterday; everything has changed, nothing has changed.

    Yup . . . pretty surreal.

    (And by the way, rambling is always welcome here.)

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  • rock
    rock Member Posts: 1,486
    edited July 2008

    I did a quick skim through the July 2008 posts.  Then I stopped. It is too depressing to think that around 17,500 women are diagnosed with bc every month in the US, you know? I can't register that it is happening to me. Or 209,999 other women this year, either. Probably just as well.

    Everything Sue said re: "disbelief."  Does anybody know the Talking Heads song "Once in a Lifetime"?  (And you may ask yourself:  How did I get here? . . . and you may ask yourself How do I work this?) Love that song. I'm gonna have a party this fall (November, I think) and there will be dancing to that song and lots of songs.  You are all invited.

    P.S. I don't think anybody here rambles. I think we express what's on our mind. But if we did ramble, that'd be fine, too.

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  • MsKarin
    MsKarin Member Posts: 647
    edited July 2008

    eddie,

    udderly smooth is for hand foot syndrome

    Enjoy the day, Karin

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited July 2008

    Couldn't agree more....I think we all ask that question all the time. At least when I ask myslef that I'm usually alone, driving, some song on the radio like Miracles by Starship, so I can break down and have a major cry. If only you believe in miracles...so would I. Great song too.  I almost said a pity party, but that's the last thing I want is pity! Sometimes it grows so old to have everyone constantly ask how I'm doing. I know they care but it drives me nuts.

    Bone pain, oh yeah been there had that. I had it with my first taxol day 4-5. Not looking forward to it again.  Also had swelling in the ankles (cankles), like I was pregnant all over again. Wish me luck tomorrow...blood work at 8:00. onc at 9:00. chemo at 9:30.

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  • rock
    rock Member Posts: 1,486
    edited July 2008

    Roxi!!!!! I will do my bloodwork at 7:45 am with an infusion to follow. Why am I so excited to have your company? (I'm going to check out the Starship song...)

    Eddie,  that first Taxol IS scary (tho my onco nurse said she had been present for hundreds of patients use Taxol and only 2 allergic reactions).  With the shingles, eye stuff, etc. I don't blame you for being braced for the worst.  But! But!  I think it is also very likely that it will proceed uneventfully.

    For me, Taxol #1 I felt very very awake and chatty. Taxol #2, I had some burning in my vein when the benadryl was going in. Apparently, that is pretty normal and short-lived.  And I felt very, very sleepy. 

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  • familyroks
    familyroks Member Posts: 575
    edited July 2008

    Rock and Eddie - good luck tomorrow!

    Edit:  Sorry!  That should be Rock and Roxi!  Best wishes to you both for your tx tomorrow.  

    Eddie - I do the steroid thing the night before and morning of as well.  I have found the next day or so, I have rosy cheeks and my upper chest has a red tint.  It goes away after that.  You'll do great.

    ~Adrienne

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  • ewesterman
    ewesterman Member Posts: 417
    edited July 2008

    Thanks to all of you. Why do you think my ankle is swollen B4 is start taxol on Thusday? New avatar coming. I am trying to keep up with some of the rest of you.

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  • familyroks
    familyroks Member Posts: 575
    edited July 2008

    Eddie -.  Mine were swollen last week, but I attributed it to the heat since I'd been playing outside.  That obviously couldn't have been the problem for you today.  No increase in sodium that you're aware of?

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    Ohhh eddie, I'm lovin your new av! Bravo my dear :O). I'll do my best to check in after mine is done thursday, so we can compare notes. I'm trying not to think about mine. gads I hope they only spear me once this time. Somebody has GOT to figure out this port eventually of the next year is going to be pure hell. And they wonder why I freak out when I go in each time.

    Good luck tomorrow ladies!!!!

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  • Sable
    Sable Member Posts: 738
    edited July 2008

    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. 

    "YEA!" she exclaimed, "I don't have to fix my hair today!"

    Attitude is everything.

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  • rock
    rock Member Posts: 1,486
    edited July 2008

    Confession: Ever since the Christmas where people gave me all these plaques, posters, notecards, keychains etc. featuring either the "Serenity Prayer" ("accept the things I cannot change" just pisses me off) or "Footprints in the Sand," I have come to fear inspirational anecdotes.

    However, Sable, I really really like this one.  Did you write it? Cuz it's really good.  

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