Anyone starting Chemo in August 07?

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  • chemomom
    chemomom Member Posts: 171
    edited August 2008

    Oh... lest I should forget. Kaye-- awesome job on the 7 pounds you've lost.  I can't wait to see pictures.  I am sure the whole thing will be beautiful.

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  • lilith
    lilith Member Posts: 543
    edited August 2008

    OK girls. I had a Yahoo group unused, and I modified so it is ours only.

    address is: http://groups.yahoo.com/group/BCORG

    It is private, members need approval (aka mine, if anybody feels like being an additional moderator, feel free to yelp), and not listed in the yahoo groups. it will work like here, with additional privacy (emails, photos, calendars, etc).

    I will send invites to those I have emails of, but for anybody I might forget - go on the site and request the membership...

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  • nash
    nash Member Posts: 2,600
    edited August 2008

    Angie--good luck with the salary negotiations!!

    Kaye--congrats on the weight loss! That's awesome. How exciting that the wedding is almost here!

    Lilith-thank you so much for setting up the yahoo group! I think that will work out great--same format as we have here as far as a discussion board, but it will be totally private, and we don't have to hide our families' identities, etc.

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  • nash
    nash Member Posts: 2,600
    edited August 2008

    OK, I talked to the woman who founded Skate for Hope yesterday. My head is still spinning. She has a background in sports business and show production to start off with. She also spends 1500 hours a year working on the show. Currently is working on getting it televised. Yikes. Totally ouf of my league. So I obviously have to concentrate on a smaller scale.

    Here's my question, though. When I was talking to DH about the whole concept of a show to raise money for bc.org, her2supoprt.org and youngsurvival.org, he thought the concept of a fundraiser for bc websites was too narrow, and that the general public wouldn't get it or care, since all they understand is raising money for research or to pay medical bills for a family in need.  So, can you girls ask your family and friends what they think of the whole idea? I do know that people do fundraisers for bc.org, b/c they have a whole section of this website about how to go about it in general. One has to get permission to use their logo, etc. But I'd be curious to see if people are confused by the whole concept--even the woman I spoke with yesterday sort of paused when I said I wasn't trying to raise money for research, but for the support groups. 

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  • DGHoff
    DGHoff Member Posts: 624
    edited August 2008

    Hmm. I suppose that the research gets all the attention, but I can certainly say that I would not have made it through quite so well this last year without bc.org and all the great ladies here. It may not be as tangible as funding research or bringing a meal to someone, but, emotional support is just as difficult to come by and just as important as all the research and medical bills being paid.

    Oh, I think the email's is a great idea, and I've PMd several, but I know I didn't get everybody. Maybe we should all just PM our email to one person and then they just send an email out to everybody so that the emails can get captured.  I would volunteer, but I am notoriously NOT on top of such things. 

    OH, and one last piece of good news! I had a mammogram on Monday on the normal side (turns out they do not really do anything for the mastectomy side).  Anyway, got the nice little boring piece of paper saying "normal."  Ever so much nicer than the last mammo I had! 

    DeAnn 

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  • nash
    nash Member Posts: 2,600
    edited August 2008

    Great news on the clean mammo, DeAnn, and thanks for the feedback and the PM. 

    I am going on vacation tomorrow morning, and will return the day Kaye leaves for the wedding. Whoo hoo! We haven't been gone that long on vacation since I was pregnant with my DD ten years ago. I don't know how I"m going to function without my washing machine that long, But anyhow, Kaye, have a wonderful time being mother of the bride, and congratulations! I'm sure it will be fantastic trip.

    Have a good week, girls, and I'll check in while on vacation if I come across a computer. Otherwise, I'll "see" you all in ten days. Sealed

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  • DGHoff
    DGHoff Member Posts: 624
    edited August 2008

    Have a great vacation, Nash!!

     DeAnn

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Nash - drive carefully, and have a great time!

    On the subject of raising money for support groups as opposed to research, I, myself, had to think a moment to place exactly what that meant - and i've been a recipient of it!  I just didn't give a moment's thought that things like monitoring websites cost money, and people don't realize what a life-line it is to those who are diagnosed with bc, especially the newly diagnosed. If presented well, (emphasizing that it's a central repository where you can access the most current studies from around the world 24/7, along with the human element of the support groups; having access to women who have experienced bc, and the current support of others journeying with you - that's what mattered to me most from all of what bc.org offers) I don't think it would matter. When ONE in SEVEN or EIGHT women are going to be diagnosed, I would think there would be a lot of people who are affected or know someone who is. Research is a big issue: "Let's DO SOMETHING to STOP BC", and people can get behind that. But support for those diagnosed Mothers, Sisters and Daughters is important too - and I think people will understand that.

    Which segues into this: When i was first diagnosed, i was emailed this site by a relative who had used it during her journey. She had moved on after a while, and no longer was involved, but i began to read every thread i could read. Hours and hours, days and days at a time until i'd absorbed as much as i could and felt like i could step out and do this - and the threads that were most helpful during that time were the gals who had done this ahead of me - sometimes 2 years ahead. We've probably all done that same thing. So, my concern is if we move away to another site and aren't posting here, this will eventually end up on a back page somewhere until it disappears altogether. I don't mind that from the standpoint of it being a "creation", but i'm concerned that the experience we own and have provided might be lost to someone who needs it. My question then is: So? Does that matter? Someone else will provide that as THEY go through it. The other thing is that in time it will be outdated anyway as new treatments arise and technology marches on, so it would be rendered obsolete in time anyway. It's certainly not the final word. So my feeling on the subject is, if we go somewhere else, maybe we should bump this up periodically for other people at least for at lease a few months.

    BTW: HAPPY ANNIVERSARY, GIRLS!!! I was going to do that on August 1st, but i forgot. Chemo Brain struck again. oops. OH WELL. We have the WHOLE MONTH to celebrate! Thank you for hanging in here, and sharing your lives with me - and being there for me. We've been through terror, hair loss, eyebrow misplacement, nausea, bloating, couch drooling, missing body parts, dysfunctional families, irritating neighbors, idiot oncs, chemo rage, weight gain, and hair growth... That's quite a bit of terrain to have covered in one year. And we need to remember Stacie and Kimmie too. Huge sigh. Happy Anniversary, Ladies. I don't know what I would have done without you.

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    oops! CONGRATS ON THE MAMMO, DeAnn! And thank you, thank you, thank you for introducing me to smoothies!

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  • lilith
    lilith Member Posts: 543
    edited August 2008

    DeAnn, congrats for the Mammo...

    and, girls - I've posted some of my pics on the yahoo group... :) totally safe to do so, as no-one can access to post OR view without me approving membership to the group.

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Hey June, don't you have a procedure tomorrow? or was it next friday?

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Lilith...please re-invite me to the other site. I can't get in!!!

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  • lilith
    lilith Member Posts: 543
    edited August 2008

    Done.

    Also - just in case for anybody else: just click on the link above, and ask for joining the group once on yahoo! site. I'll just have to approve, the site will warn me there is a new comer... :)

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited August 2008

    Hi Ladies,

    Sorry I haven't been corresponding but I've been busy with doctor appointments.  I went Thursday for genetic counseling and I am going to get tested.  The counselor also highly recommended me to remove my ovaries.  She is the third or fourth medical professional to suggest this.  I think it's going to be an option that I will choose. 

    Lilith, I'm okay with the private site also.  I just love this website and I'm also  not good with change, but to talk with you ladies I would follow you all to the moon.  So it's okay with me.

     Kaye, good luck with the wedding.  My thoughts and prayers are with you and your family at this WONDERFUL time in your life.  What a difference a year makes!!!! I'm so happy for you.

    Nash, keep on working hard on this project.  I think if more people knew the importance of this website, fundraising for it would be great.  All my friends and family must be sick of me talking about "my website" and all my friends on it, but I know that they know the importance of it.

    Love and hugs to everyone else.  I am going away for about a week.  First we are taking my son and nephew to a water/amusement park in pennsylvania for 2 days and then we are bringing them to Manhattan to stay with hubby's sister while we go celebrate our 25TH WEDDING ANNIVERSARY.  I can't believe I'm typing that, but, yes, I am married 25 years on August 13th.  We always dreamed of going to Italy to celebrate, but as life would have it, we are going to Cape May, NJ.  Which is a very quaint beach town at the very last tip of New Jersey.  There are lots of Victorian homes and nice restaurants.  It's very romantic.  Hopefully, Italy will be another year.

    I'm thrilled to be going and I will write you all when I get back.  Have a great week.

    Lots and lots of hugs, Jackie

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Jackie, HAPPY 25TH ANNIVERSARY!!! It may not be Italy, but Cape May is probably absolutely charming, and you'll have a LOT to celebrate. Have a Wonderful Time.

    Btw, sounds good re the oophorectomy (sp?) "Take no Chances" is my new motto. (That, and "dessert FIRST", but whatever.)

    And about the new site, I just went over there to look around. I saw your pictures, Lilith - they're great! I signed in, and it worked, so we'll see. I'll probably be on both anyway, because of the info here, and the notifications of the results of new studies, etc. etc. but it's kinda nice to have it be a little more private. I'll post some pix there, too.

    OOOOH. Jackie! Almost forgot - Let's talk Italy for SOME day. Dh and I have always wanted to go also, and have tried to figure out a way where our company could pay for it - studying some ancient Italian Painting Technique is what we were hoping. After paying for this wedding, he says our flights will be half price because of the credit card points. AND LILITH HAS A HOUSE THERE FOR PETE'S SAKE.

    Lilith, do you ever rent it out? 

    June, I'd forgotten - your procedure was the 14th, not last friday. Sorry. How are you holding up?

    ok girls, more later. It's 9:22pm. I've been running errands outside all day, and it's STILL 105 degrees. (yes. at 9:22pm. Welcome to Hades.) so i'm DONE. 

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  • lilith
    lilith Member Posts: 543
    edited August 2008

    :) Kaye. The house is fully furnished as a main residence, so really renting to strangers is not my goal, but I am happy lending it to friends... I would definitely consider coming to an agreement with any of you ladies, whatever you guys would be comfortable with... plus I would be delighted to come up and meet you and show you "the ropes"...

    It is true that we probably have to fly now - or never! prices are getting steeper and steeper as oil goes up. I hate it, as I have been living across 2 continents for the last 20 yrs, and I cannot imagine being confined to either one. I guess I feel just about as much european as I feel american. Go figure.

     Jackie, a HUGE congratulatory hug for your 25th yrs anniversary. That is a great thing, and it is sooo sweet that you guys choose a romantic, quaint place to celebrate it.

    Hugs, hugs.

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  • God-is-good
    God-is-good Member Posts: 46
    edited August 2008

    Hey everyone

    My first chemo is set to begin Thursday Aug 14. Taxol/Avastin. 4 hours. Yep im really scared but pretty mentally psyched so I think im ready. I've dl the Oprah and Eckard Tolle podcast "The Awakening" to listen to during this long appointment. I am a divorced mother of 3 teens, my oldest daughter of 19 is my nurse :). She starts her second year college on the 18th but has moved back home to drive to a closer campus. Its a lot for a child to have to do and i know its stressful on her as we are so close but she hides it from me. I am so happy to hear most of you are making it through this chemo fairly well. I have to work so im praying i can do it. I appreciate the bond we all share it truly helps me to stay positive!

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Hi Teresa-Annette, Welcome. I'm glad to see you found the Recurrance/Mets thread. Those gals will be able to help you big bunches. Also, have you seen the thread of those Starting Chemo in August 08? Those gals will be there to walk with you through your tx's as they are starting chemo this month also.

    In reading your posts, I'm wondering why an hysterectomy or oopherectomy (sp for both?) weren't at least discussed at your first dx in 1998, based on your age and familial history. Are you happy with your onc? The reason I ask is that my original dx was done locally, and treatment discussed, but I decided to receive care and treatment at a research hospital instead (2 hour drive away), and it was the best decision i ever made. I don't know if local doctors are able to really able to have the resources to deal with cancer - esp mets. I don't know where you are (geographically) or what your insurance will cover, but it might be something to think about.

    Your 19 yr old daughter sounds wonderful. And don't worry, it might be a lot for her to deal with it, but ultimately it will be good for her - caring for a mom just makes you wiser. I wish Nash were here to tell you her experiences as a daughter of a mother with bc. (she's on vacation this week). 

     And yes, we who are here did make it through chemo just fine. Was it fun? nope. Was it do-able? ABSOLUTELY. And actually, laughing and comiserating with everybody did make it very bearable.

    Hang in there Teresa - I will be praying for you.

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  • God-is-good
    God-is-good Member Posts: 46
    edited August 2008
    hah gotta watch those dates..thanks Kaye Smile
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  • suz45
    suz45 Member Posts: 796
    edited August 2008

    Hello Ladies,

    Glad to here everyone is well. I must admit I will be sorry to see you guys go to a private site. Even though I am in the Dec 07 chemo group I have followed your journeys as well since about October 07. have laughed and cried right along with you all (Tongue outeven started making veggie smoothies at least once a day) I hope you guys still pop in to keep us lurkers up to date.

    Love and hugs, suz

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  • suz45
    suz45 Member Posts: 796
    edited August 2008

    By the way Jackie I am also going ahead and having my tubes and ovaries (unilateral salipingo oopherectomy, lol sp) removed Sept 12, I was tested and came back BRCA1 possitive. This was highly recommended and what the heck, anything to help not having a repeat of all this is a good thing. Good luck with your tests,

    Love and hugs, Suz

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Hi Ladies,  ... that includes Roya, Suz45 and whoever else is out there in the cyber land. I've been thinking. I think I'd like to keep this discussion going for old time's sake (and for the people like Roya, Suz and countless others who may not actually surface, but who need the connection anyway)...and let's use the other site for posting pictures and any more personal stuff that has to do with life in general. Input?

    Suz, thanks for finally checkin' in. And I know there are others out there. You can't hide. I can hear you breathing. Don't be afraid. We don't bite. We'd like to know you, too.

    Kiss

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  • suz45
    suz45 Member Posts: 796
    edited August 2008

    LOL Kato, I know you dont bite. I am normally the one who is out there keeping things together. Whatever.. it seems like life has thrown a topsy turvey at me and its all ok. I like you guys.. really. I think you were just far enough ahead of me to allow me to see the light at the end of the tunnel.

    You cant even begin to imagine what I put through my blender to try to drop those silly 15 pounds that seem to have found a place around my mid section... Its all good and I really dont care, I just want to feel good about me and the people around me. I hope you all stay in contact, if not I might have to crash your group cause I like you all so much.

    Love and hugs Suz

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  • lilith
    lilith Member Posts: 543
    edited August 2008

    I have no plan to stop coming here... :) it is a lively discussion. And, Suz, why don't you come around too?

    Cheers, lil

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited August 2008

    Hey All,

    Like Suz I've been mainly lurking the past 2 weeks.  I've got my head down and am pretty much staying in my 'foxhole' until I get the results back from next Thursdays bioposies.  I do believe that this has been the longest six weeks of my entire life.  And if I had it to do over, I would have said 'no...we're not waiting...just schedule the procedure ASAP!  I know all this agonizing has not done me any good whatsoever but I just can't seem to stop it. Even the thought of starting back down the bc road again is absolutely unendurable to me at this point.  I have talked very seriously with my DH and right  now my feelings are if the results are positive is to take what time I have left and forego any further treatment.  I'm so sorry to be laying this crap on you girls I'm just nearly out of my mind with worry. 

    I've read every word that's been written over this past month and glad to see that lilth and DeAnn returned safely from great vacations.  DeAnn....good news on the mammo and what great pictures those were! 

    Kaye....is this Saturday the "big day?"  

    Jackie and Nash....sure hope you two are having a ball on your trips.  Jackie, DH and I celebrated our 30th. anniversary on 7/21 and like you I couldn't believe it....hope yours is very special for you both. 

    lilith....I'll be over to visit your site as soon as I can get my head together a bit better.

    Kaye....I totally agree that it is important that we keep this thread alive as long as possible.  If there is ONE person out there that we can help in even the smallest way then that makes it all worthwhile my sisters.  Besides, a part of me feels like this is sort of an on-going memorial to Stacy and Kim. 

    Hope all is well with everyone.....

    lots of hugs,

    June 

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  • DGHoff
    DGHoff Member Posts: 624
    edited August 2008

    I agree that it is good to keep this thread going over here and just use the yahoo site for the more personal stuff, sharing pics, etc. I lurked for a good two months before joining the discussion when I started chemo, and I was helped so much by you all during that time.

    June, oh how nerve-wracking to wait. I only had to wait two days for the mammo results, and that was bad enough. I will be thinking of you Thursday. 

    Jackie- congrats on 25 years! I hope you have an awesome vacation!

    Kaye and Suz, I'm so glad to know that the green smoothies are working out for you. I love 'em, even though lots of folks think I'm crazy to drink beet greens, and whatever else I have. I even did some carrots, tops and all the other day. My favorite is still, however, OJ, spinach, pear, and pineapple. Yum, yum, yum.  If I don't check in beforehand, I want to be sure to wish you a happy wedding celebration, Kaye!

    Lilith, I haven't been over to the site yet as I was out of town at my nephew's wedding for three days, but hope to soon. I'm going out of town again for work tomorrow, and then home for two days and then to Seattle for a week for work. Crazy!! But, it is still better than what I was doing last year in August!

    Hugs to all!

    DeAnn  

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Well thanks for the Anniversary Wishes, DeAnn, but technically they go to Jackie. My anniversary isn't until September - it'll be 29 years!!!! (Good Grief. I'm HOW OLD?) And DH and I will have just broken the Bank of Dad getting DD married off, so we'll rent a movie and hang out. Works for me!!!!!

    Oddly, we'll be in Portland the same time you'll be in Seattle. The wedding is on the 22nd, (so, no June - not this Saturday. A week from Friday.) and we'll probably be doing the whole family thing, getting to know inlaws, getting to know our new son in law, getting to dance like spastic monkeys after our Magic Spastic Monkey Dancing Lessons. It'll be great - but it also would be great to be able to see you!

    June - I remember feeling that way in the very beginning (in what seems a Very Long Time Ago)...so don't make any decisions now. I can see you're struggling.  Don't make any decision you might regret by the time next year is here...Be Patient. Wait for all the facts to arrive. NOTE: Life is a Gift. And as a gift, it should be cherished, and protected, and yes, fought for. I understand "the Fight"and how it just seems too much work sometimes but consider also that next year at this time you may feel differently. I'm praying for you.

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  • katoMato
    katoMato Member Posts: 645
    edited August 2008

    Hey June...How did yesterday go? When will you have results?

    I'm leaving for Portland today so communication will be spotty for the next two weeks, but DH has his laptop, so i should be able to be connected.

    love you all - and still praying for you, June

    Welcome Home Nash - (when you get home!) 

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  • DGHoff
    DGHoff Member Posts: 624
    edited August 2008

    June, just wanted to check in and see if you have any news and let you know I've been thinking about you. 

    Kaye,  Did I write anniversary earlier? I meant to have a happy wedding celebration for your DD! I'm sure your dress will be a hit!   By the way, I will have to post some pictures on the yahoo site of my DS in his little tuxedo at my nephew's wedding last week (he was ringbearer). So darned cute!

    DeAnn

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  • nash
    nash Member Posts: 2,600
    edited August 2008

    Hi, girls! Just got back and am doing Endless Loads of Laundry. I will post pics on the Yahoo site this weekend. BTW--I, too, want to keep chatting here and keep the other site for photos and private communication. So it sounds like we're all the same page with that. Smile

    June--I was thinking about you and your biopsies while on vacation. Praying for good results. Happy 30th Anniversary!!!!!!

     And Jackie--Happy 25th! So cool! Good luck with the BRCA testing. The docs are recommending an ooph for me, too, when I turn 45 and come off of tamoxifen, so I can switch to an AI. 

    Missed you all!  

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