Anyone starting Chemo in August 07?

Options
1…6364666869…99

Comments

  • Roya
    Roya Member Posts: 346
    edited September 2008

    Lillith, I am an expat.  We live in the 7th Arrondismont.  My DH  is Swiss with family mainly in St. Gallen and Pagig.  His native language is Swiss German. I am from the USA......Missouri.  I have visited Lausanne.  I am barely French speaking but working hard on it.  We haven't been here for a very long time, just over a year,  and are only here for his business.

    · Share on FacebookShare on Twitter
  • katoMato
    katoMato Member Posts: 645
    edited September 2008

    Hello Ladies,

    Thanks for the colonoscopy info. I appreciate it!

    Nash, my appt. is on the 29th...AFTER Dh and I have our 29th anniversary weekend away. (We're going over to Huntington Beach to get out of the heat and breathe in salt air...usually SD is our first choice, but all the "overlooking the ocean" rooms were full. We thought we'd check out someplace new.)

    Lilith - You just put into perfect words how each one of us feel. We've got this incredible past link, and now we've progressed through that, on to life-as-it-is-now. 

    I think about you girls - individually - pretty much every day, for one reason or another. And I'm STILL so glad you all are there. You all are still a topic of conversation between DH and I a the dinner table, (or where ever). If I haven't checked the board for a day or so, he still does, and he makes sure I know of any new developements that occur.You all have blessed my (our) life in funny, little ways. (BTW: Tami, I am now a country western fan, thanks to you. (never thought the day would come.) DeAnn - not a day has gone by where I haven't thought of you. I'm still having smoothies 2X a day, EVERY DAY. And I've started putting the capo on my guitars on the 10th fret just because it sounds so cool.)

    Lilith - if you fly to LA, consider staying with us... Seriously. We have 2 (unused) guest bedrooms. We're 2 hours away from LAX. I could pick you up. That goes for the rest of you, too. (Except Nash. I'm not picking you up from LAX. Period.)

    And Roya...i THOUGHTi heard the pitter-patter of little footsteps following along behind us! Well, you're now ONE OF US. See? You can run, but you can't hide. Thanks for the post - it reminds me that it all makes sense - this holding on to one another through the bumpy ride stuff. We are proof. You are proof. I will pray for you on Friday. Good job making it through the tough stuff! I will pray that Taxol is a "non-issue" for you. You sound like you're doing great. Keep us posted - we care.

    Ok. I'm getting summoned back to work. Hasta, pasta.

    · Share on FacebookShare on Twitter
  • katoMato
    katoMato Member Posts: 645
    edited September 2008

    oops. forgot. Thanks for the compliments on the new avatar...I've been putting some pix on our photobucket acct so that i can put them on the other (any other!) place but it takes concentration. I don't seem to have much of that.

    Kiss

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hey, girls! I love it when we have people stopping by our thread--it's like having company over! Big hugs to everyone, and yes, good luck on Friday to you, Roya. Keep us posted on how the Taxol goes.

    When I was at lunch with the SD group recently, one of the women who started chemo in February and had recently finished chemo was saying how much she missed her bc.org chemo group. I thought--how great that our group is still so tight, even though we've been done for awhile. I think that says a lot about the cohesiveness of our group. I just assumed the other chemo groups were the same way, and I'm sure a lot are, but I was surprised this woman at lunch was already out of touch with her group.  

    And I love that other people read our posts and get something out of them and feel comfortable popping in. I hope you girls stay and play!

    Kaye--I can't believe it's your anniversary again already--it seems like you just had your 28th. The year was slow and fast at the same time. Hungtington Beach will be nice. Oh, and the way the traffic on the 5 is, sometimes I think it would be easier for me to fly into LAX than to drive. Undecided

    · Share on FacebookShare on Twitter
  • DGHoff
    DGHoff Member Posts: 624
    edited September 2008

    Jackie, I loved the article and you look fantastic in both pictures!

    Awesome Avatar, Kaye!

    Angie, congrats on getting your port out!! Yay!

    Hi to all!

    DeAnn 

    · Share on FacebookShare on Twitter
  • chemomom
    chemomom Member Posts: 171
    edited September 2008

    Hey gals.  I am incredibly proud of us all as well.  And I love still hanging will all of you.  Nash, I am really, really, REALLYYYYYY hoping I can find a way to make it out for your ice show.  How great would it be if we could meet?!?!?!?!?!?  Any or all of us?!?!?!?!  Oh, it would be awesome.  Between having little to no time out from work left, the kids, and flying out, it will be a stretch, but i would so love to get there.  A family reunion........

    · Share on FacebookShare on Twitter
  • lilith
    lilith Member Posts: 543
    edited September 2008

    :)

    Roya. It must be so hard to be going through BC while being far away from your friends and family. Expatriation is a wonderful event, and a life-forming experience, one I have lived with all my life - but when one is sick, all one wants is some TLC and comfort. I hope it isn't too hard. Please, please, if you need help - I'll be happy to lend you a ear, and if you need help with French, let me know. Not only I am bilingual, but I've been through this nasty illness. I am just a phone-call away... send me a PM if you wish so.

    Kaye... lets see what comes in the next few months. As Angie says, getting together would really feel like a family reunion, the organization is a bit tough but I think we can make it. Flying over is quite expensive for me, but something I would be happy to invest on - it would be a lot more soul-enriching than a piece of jewelry... :) and I really appreciate your offer.

    Hugs...

    · Share on FacebookShare on Twitter
  • DGHoff
    DGHoff Member Posts: 624
    edited September 2008

    Hi All,

    I so agree that I feel so blessed to have had and continue to have the companionship of all of you this past year. And I love welcoming new folks to our conversation too. 

    Kaye, I thought of you this morning too as I drank my broccoli, spinach, mango, banana smoothie! 

    Nash, just let me know when the skating show will happen, and I will make it a priority to be there!

    DeAnn 

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hi, girls. Hope everyone is having a good weekend. I e-mailed the Pink at the Rink letter to the skating director on Thursday, and she e-mailed me back the same day and said to call her. So I left her a voice mail on Friday, but haven't heard back yet. I'm hoping to speak with her soon, b/c I want to firm up a date so those of you who are able to come can start planning. And if she's not ameniable to the whole idea of the show, then I need to try talking to the management at my home rink.

    One of the skaters I talked to said that in years past, the rink has tacked an extra day onto their Christmas show and had that show be a charity fundraiser. On one hand, that concept doesn't appeal to me b/c I don't know how I'd work my ideas for Pink at the Rink in with the Christmas show, plus it would be a tough time of year for people to travel (I think the show this year is the weekend of Dec. 14). On the other hand, it may be the only feasible way to get Pink at the Rink started. I guess I'll see what the skating director has to say about the whole thing. I'd really like to have the show next June.

    I really like the concept that the woman who runs Skate for Hope executes (whom I'd talked to on the phone), but the logistics of her show are overwhelming. Everytime I read her informational brochure that she gives the skaters, I get a bit of a twitch. If you have a chance, can you look at it and see what you think? Seems like there are simplier ways to execute the show, which may not raise as much money, but which may let me keep my sanity. The link is:

    http://www.skateforhope.org/Brochure.pdf

    I've already abandoned the idea of running the show through a newly created non-profit, at least for the first year, and think I'll focus the fundraising on just bc.org. Incorporating, filing for non-profit status with the IRS, etc, seems like a bit of overkill for the beginning. I think the reason the Skate for Hope gal did it that way was so she could have 100% control over the whole operation, plus she donates to more than one bc charity.  Thoughts on this?

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    OK, just got off the phone with the skating director. She doens't have ice time available at her rink to host another show, but she was nice enough to give me some info on show production in general. So...drag! I'll have to approach my home rink now, which will be a bit of an uphill battle, as the management there is very disorganized. But nothing ventured, nothing gained, right?

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    OK, now I'm really getting overwhelmed--saw discussion of another couple skating benefits on my skating forum--this one is really, really impressive. It's for a foundation started by the family of a young skater who recently died of cancer:

    http://www.stephaniejoseph.com/pdf/FINAL 2 sjmfflyer 8 x 10.pdf

    They've got a ton of corporate sponsors and have brought in huge, huge talent (including the pairs team I want to get b/c they live in San Diego). How in the world do people accomplish this?!?!?

    Here's another one that's a benefit for pediatric cancer:

    http://www.northshoreicearena.org/Pages/FrenchieSkate_Program_Ad.pdf

    Obviously this can be pulled off--the big question is how. I'm feeling a tad discouraged, b/c if my home rink says no, I'm out of options. 

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Sorry I have been away for awhile... been kind of busy, just working alot and all the usual stuff...

    Seems like alot has happened here while I've been gone!

    Kaye, your pic looks great!  Have you had the colonoscopy yet?  They are really a breeze... but the prep sucks!  Also... ask if they will put you all the way out for this procedure.  I was put all the way out, and I am so glad!! 

    Just a short note... and an update.  I seem to 'think' that I feel a lump on my left breast... where I found the bc in 3/07, but I think it is just scar tissue.  I'll be seeing my surgeon on Tuesday to see what he thinks.  I don't know what scar tissue feels like, so I'll ask him.  I feel kinda stupid and he'll probably just say... yep it's scar tissue...  and I will go home.


    Hope everyone is doing great!  I haven't had a chance to catch up with everyone.

    Hugs,

    Harley

    Oh, Nash, I almost forgot...  I think that your program is awesome!

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hiya, Harley! I'm glad you checked in. We miss you! Keep us posted on your appointment with the surgeon on Tuesday--fingers crossed for scar tissue. If it's any consolation, my onc had found a new lump in my "good" boob a few months ago, I went for an MRI, and it was nothing. So hopefully yours is nothing, too.

    On an interesting note, my period, which had been on hiatus since last October, suddenly reappeared today. I'd thought it probably would, b/c the hot flashes had stopped several weeks ago (THANK GOODNESS) and I have been feeling very funky since Friday, which now turns out to have been PMS. It's amazing how weird hormones can make you feel. Anyhow, several doctors had assured me my period was gone for good, and the onc had pulled my estriadol in January, which showed me firmly in menopause. So, there you have it. Another good example of how the docs really don't know much of anything for sure. 

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Oh Nash, wow!!  I guess that is why my onc doesn't really believe that I'm postmenopausal... but I got my gyn onc, who did my D & C last month, to order some blood work, and yes, I am STILL postmenopausal...  so maybe I will be a candidate for trying one of those AI's.  I'll ask when I see my onc in December.

    Take care!!

    HUGS
    Harley

    · Share on FacebookShare on Twitter
  • katoMato
    katoMato Member Posts: 645
    edited September 2008

    Hi Ladies,

    Nash - the skate for hope site is unbelievable. What an undertaking! Maybe it takes a year or two to do all the ground work needed before you can even have it happen...No advice here... The village idiot has spoken.

    Harley - Hi...Hey, I thought you had a mast?...Can there be a lump in a breast with  no breast tissue? I may be mistaken (I've been that before) and as I have no memory, I can't be sure if you jettisoned the girls or not. Foot in mouth Keep us posted.

    Oh - just something I've wanted to post before but haven't gotten around to it: The Arimidex i'm on was making me feel like I was ancient. Achy joints in my hands and feet, Carpal Tunnel in my wrist - really pretty uncomfortable, especially in the morning. So DH looked it up (bless his fuzzy heart) and found something called "Micro Lactin" and I'm here to tell you IT WORKS.  It is supposed to rebuild cartlidge along the same concept as Glucosamine and Condroitin. The problem with Glucosamine is that you need to take it for 3 weeks before you notice anything different, and I guess I wasn't patient enough.  Micro Lactin worked for me in 48 hours. Seriously, two mornings after starting it, I noticed a difference. Really amazing. The doctor who will be doing  my colonoscopy not only heard of it, but takes it too and explained to me that it's supposed to be better than Glucosamine. He said he's seen before and after X-Rays where thecartlidge has actually increased from Glucosamine, and this stuff is supposed to be better. I've done several "experiments"and every time, I can tell the difference within one or two days.

    Also - since I'm jabbering on... There is an interesting article in the September 15th issue of Newsweek about Cancer. It discusses the progression of treatment and research from about the 1950's through the present time.  It discusses where the research money goes, and why, and how it's (research money)  been geared toward "safe" (ie: good return on the investment) research , rather than unconventional, innovative, "wild-theory" research which might benefit (and actually has in many cases - thanks to private funding)  the actual patient. There is alot covered in the article - they talk about all the cancers, and it's really rather  interesting...check it out.

    ok. done talking now. Love to everybody....

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Kaye,

    Yes, I had a bi-lateral mast., but my surgeon says that he can't be sure that he got ALL the breast tissue, and there may be some left.  Therefore, I still need to do the self checks, and my surgeon even wanted me to get mammograms.  But, I said NO WAY!  I don't want these saline implants to spring a leak!  Instead, I had a breast MRI in April.

    Now that even the last part of my reconstruction is finished, since I had the nipples put on in May, and the aureola tattoos are as good as they are going to get (they faded ALOT, but that is another story!), I have started trying to feel for lumps.  It is where the lump was before, so I really think it is probably just scar tissue, but I figure I better get it checked out.  My surgeon will know what scar tissue feels like, so since he's the expert, I decided to ask him.

    Now I need to get going, if I'm going to make my appt. on time.  He is 'fitting me in', so I'll probably be there in his waiting room, waiting.... til about 4:00!!!

    Take care everyone...   Talk to you later!

    Harley

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Hi... I'm back from my appt. with my surgeon. 

    He felt the lump and it hurts this time...  it's around where the original bc was found, but the first time, it didn't hurt.  He thinks it isn't anything to worry about.  He said that it's probably just a cyst, but he ordered an u/s, so I'll be doing that on Oct. 2nd. 

    You guys, while I was sitting there in the exam room, I was thinking, "Here I go again!"  and to think I had the bi-lateral mast., so I wouldn't have to go through this again.  So anyone who has had a mast., I am here to tell you that you can still get lumps after you have removed your breasts.

    Harley

    · Share on FacebookShare on Twitter
  • lilith
    lilith Member Posts: 543
    edited September 2008

    OHHH, Harley! I pray it is really only a false alarm. I would expect your surgeon to be right!!! and that it is only a cyst. Yuk.

    On my side, I received the path report from my colonoscopy and - YEEEPPEEEE - all is clear, clear, clear! it feels like - this time I can really go on with life. Still the ovariectomy in front of me to plan for, but everything is clear!

    Kaye - I'll check on the MicroLactin. I have lots of arthritis in the family (yes, that too... geeez), and now with Tamoxifen I am definitely feeling my joints. I just fear I'll have to wait to start with that for a visit in the US... I don't think health stores carry this here.

    Nash, I guess the return of the period is good news, you are so young still. It just means that your body did a good job in restauring your health... :) I hope mine will NOT be back, because it would just be an extra hassle, without any of the benefits (aka another baby, that at my age I think is out of the question). Sort of adding insult to injury, in my books.

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Lilith,

    YAY! on the good news from your colonoscopy!! 

    Thanks for all the good wishes about the u/s coming up.  My dr. wasn't in a hurry to schedule it, so that is a good thing!

    Hugs to all,

    Harley

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hi, girls. Harley, I'm bummed you have to go for an u/s--like you said, it's the "here we go again" feeling, along with the annoyance of "but I had a bilat!". I'm glad the surgeon isn't alarmed, though. Keep us posted!!!

    And hurry for the clean innards report, Lilith! 

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    BTW--this floored me--there is a girl over on the Young Women's board who was just diagnosed with bc. She is 15 years old. My jaw about dropped. I can't even imagine how hard this must be for her and her parents.

    · Share on FacebookShare on Twitter
  • katoMato
    katoMato Member Posts: 645
    edited September 2008

    Stunned silence.

    Absolutely unbelieveable.

    Keep raising money and awareness, girls. We are going to have to get a handle on this.

    Roya - how are you doing this week?

    · Share on FacebookShare on Twitter
  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited September 2008

    hey Kato and nash..when you joining us for lunch???

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    Oh, Nash!   I am stunned beyond words.... 

    Praying for that 15 yr. old girl, and her family.

    Harley

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Howdy, girls. Thanks for checking in on us, SoCal. I actually made it to the lunch bunch last month, but won't be able to come this Sunday. Kaye?

    I just can't stop thinking about that poor 15 year old. My daughter's 10th b-day is today, and one of the gifts I got her was a book that just came out on breast health, authored by the doctor who founded bc.org, and geared towards tweens and teens. It has an entire section on bc, and I thought it would be good for dd, since she's so worried about getting it herself.  Anyhow, I just keep praying that she won't go the path of her mother and grandmother and be that weird medical statistic, where the docs go, "Wow, we hardly ever see that", which seems to be my family's speciality. I think the 15 year old on our site is the youngest I've ever heard of. So awful.

    · Share on FacebookShare on Twitter
  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2008

    Nash, that is just heartbreaking.

    I just got back from meeting with the doc to get my BRCA results and I am NOT positive for the brca gene.  I am so thrilled for my daughter, who is 21.  It was weighing heavy on my mind and I'm just happy that some news was finally not so bad.  I pray for all our young girls.  This disease is dreadful, but 15???? it's sickening.

     Hugs, Jackie

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Yay, Jackie! I'm so happy your BRCA came back negative!!!!!!!!!!!!!!!!!

    · Share on FacebookShare on Twitter
  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited September 2008

    Hey All,

    This is the first chance I've really had to check in with everyone...but I READ every word of your posts.  :)  Let me chime in with the rest of you all by saying yes indeedy this board has been a god send for me and I know you all agree.  And yes, it is so wonderful to see each of us 'gettin on' with our lives after BC.  We all know such intimate bits and pieces about each others lives that I believe  the connection between us will never be totally broken.  YEA!!!!!!  We seem to be this strange mixture of 'pinky swearing' and pen pals and sorority sisters and virtual mentors and prayer group and oh so many other things that it's almost impossible to explain to anyone else.  Though most of us have never met I know in my heart that Miss Nash is going to fix that!

    Nash..a window was closed so that now a door can be opened my friend.  I identify with you in so many ways and you remind me of myself at your age.  For I am also a crusader and a rebel when it is necessary and in BC it always seems to be necessary.  What you're trying to do is extremely worthwhile and also ambitious....so what if it doesn't get accomplished in the exact timeframe we've been discussing?  You'll get there and we'll be here cheering  you on each part of the journey. 

    Kaye..did I  miss the wedding pics by accident?  I so want to see your beautiful daughter on her day and all of the loving family.  29 years????  We celebrated 30 in July and what a blessing to have wonderful husbands.  Congratulations to you both. 

    Jackie..I am never going to be a cover girl for anything!!!!  But you my friend were stunning and such a great article.  Your family has to be so proud of you cause we are!   :)

    Harley..I don't know if you read my posts in July & Aug.  but I was in for a 6 mo. check and they found something in both breasts.   Eight weeks later and a dual biopsy everything was negative. I've kidded my family by saying my knees are still so sore because I can't get up and off of them for giving continual thanks.  Now, I'm going to add you to the top of my list during my 'knee time' and just know that all will be well. 

    lilith..happy days when the results are negative!  I still need to get mine scheduled and over with. Just one of those things we all have to make ourselves do I guess.  Glad yours is over.

    Roya..welcome to our board and I hope you become a regular.

    DeAnne..all quiet on your homefront these days????  :)

    As for me I was to my oncologist this morning for my regulary scheduled visit.  You all know that I've complained before about this group and their 'cattle call' techniques to their patients and it just seems to get worse.  I want to bounce something off of you and ask that you give me your feedback please.  9:30am appointment/ arrived 9:00am (they insist on you being there 30 minutes ahead).  Called back to the 'inner sactum' at 9:45am along with 10 others for lab work. got weighed and sat until 10:15am/ in for bloodwork and re-seated.  At 10:30am called by a tech for vital signs and the usual list of questions and reseated (told there were no available exam rooms).  at 11:15 was placed in an exam room/ nurse enters and asks the same questions the tech did and said doc would be in shortly/ doc arrives in room at 11:30am and says 'sorry for the delay'.  Now please know this is not the exception here but the rule it seems.  Am I nuts or are they??????

    Best to all...

    June 

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hiya, June! I think the wait at your onc's office is ridiculous. First off, there's no need to arrive 1/2 hour early--it's not like you're a new patient who needs to fill out paperwork. Then, if they're pulling blood en masse, it's going to take forever to run the panels so the onc has them when he sees you. You should not have to be there for 2 1/2 hours before seeing the doc.

    I've had to wait for hours before, but there was always a reason. Once, my mom and I were seeing her second opinion onc, and after they put us in the room, they actually forgot about us. Being the patient sort of patients, we just sat there, until finally I went out hunting for a person. In the meantime, the onc had gone to lunch b/c no one told her we were there. Duh. Then another time at my regular onc, she thought my blood hadn't come back yet when indeed it had, so I waited an extra hour needlessly. Then there's my DD's endocrinologist, who always makes us wait at least 2 hours, but I think it's because his office is incompetent.

    Anyhow, didn't mean to babble on. But my crazy onc, nutty as she is, usually sees me pretty much on time. I go 1/2 an hour before the appointment time so the blood can be drawn and ready when I see her, and she usually sees me pretty close (within 10-15 minutes) of the appointment time.

    · Share on FacebookShare on Twitter
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2008

    June,

    I think I must be losing my mind, because I can't remember anything these days!  I don't know if this is still left over from chemo, or if this is from Tamoxifen, or maybe it's just the new normal... I hear so much about the new normal, and I don't like it at all!    So again, sorry, but I also don't remember if you had a double mast. 

    Anyway, sorry, because I don't remember your posting about having to have two biopsies... OUCH!   I am really praying that I won't have to have a biopsy, but if there is a lump there, I want it OUT!  So, I guess that is the only way to get it out...  

    Well, I also think that your wait for your onc. was quite a bit excessive!  I waited once 1 1/2 hours for bloodwork results at my onc's office... they said that they didn't know I was waiting!  So, after that, I refused to sit in the front waiting area, and insisted that I would sit in the smaller, inner waiting area, where the drs. have to pass by and the exam rooms are back there, too, so they had to see that I was there.  After that incident, I still had one incident where I was waiting for blood work, and everyone left to go to lunch!!   So that day, I just LEFT, without getting my b/w results. 

    Since after the first tx, I started getting Neulasta shots, I didn't need to stay, and I am sure that everything was fine... but I DID call the onc's office to ask for my b/w test results, and to let them know that they left me sitting there, and I was NOT HAPPY!!

    Thanks so much for all the prayers!! 

    Harley 

    P.S.  Also, I don't see where I posted to let ya'll know the results of my endometrial biopsy...  maybe I did, but again... just can't remember....  I had a D & C, with hysteroscopy, and the gyn onc scraped the lining and took out some polyps, and it was all b-9.  Thanks for the prayers... sorry I have been so behind in posting!

    · Share on FacebookShare on Twitter

Categories