Anyone starting Chemo in August 07?

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

    Harley, fingers crossed for pesky fibroids or similar benign condition causing your bleeding. Keep us posted.

    Well, I give up on the search for a better onc. I called the university hospital where I was going to transfer my follow-up care, and they've changed their follow-up protocol so everyone is seen by a NP instead of the onc. They call it their "Breast Survivorship Clinic". Sounds like a cost-cutting measure to me, and not at all what I want. Very disappointing. That leaves exactly two other bc oncs in town--one we'd tried with my mom and that didn't work, and the other is at another comprehensive center. I think it would be too hard to try to transfer to the comprehensive center simply b/c they didn't do my surgery, chemo and rads. I'd be coming in at the tail end of things, and I think that's too convoluted. So now my plan is to find a good gyn (I'm going to a new one next week) and a good internist. I think if I have those two docs in place, things will be OK. At least I actually get to see my onc for follow-up at the current place, and she is really good about ordering tests. In fact, I go for a CT on Tuesday to follow-up on a liver cyst that everyone swears is a cyst but that I want them to double check anyhow.

    Hope everyone has a good weekend. Party on, DeAnn! 

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  • katoMato
    katoMato Member Posts: 645
    edited July 2008

    Glad something clicked, Angie. {{hug}}

    Nash, i have such a hard time grasping why in an area as populated as San Diego, there isn't a larger pool to draw from - it must be really exasperating for YOU. And with young ones a two or three hour drive would be out of the question, i suppose. ICK. And I'm glad you're getting the liver cyst looked at again.

    DeAnn, you party hearty! Btw, i've discovered frozen grapes in my smoothie. They're like little sweet ice cubes. I just keep them in the freezer. Too easy.  And the total weight count is.....(drum roll...) 6 pounds. If I'd exercise a little I'm sure I could get this done faster. But, no. I'm too lazy. Sorry. 

    Harley, keep us posted. June, you doing ok?

    Have a nice weekend! 

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

    Yes, I'm having trouble understanding why, in a metro area of almost 3 million people, there is such a shortage of good medicine. I've heard other women grumble about it, too, so I know I'm not just being overly picky.

    6 lbs--that is awesome!  

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  • DGHoff
    DGHoff Member Posts: 624
    edited July 2008

    Hi All!

    The party was great, even though it rained like mad for about 15 minutes! Loads of fun. I'm exhausted though, and still have to finish packing for vacation. I won't be posting for a few days as I'm off to Madeline Island for the week. (its a small island on Lake Superior). Gonna do some kayaking, biking, etc and just relaxing. 

    Hope you all had a lovely weekend!

    DeAnn 

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

    Glad the party was fun, DeAnn! Have a wonderful vacation!

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  • lilith
    lilith Member Posts: 543
    edited July 2008

    Well, here I am back.... I don't know where to start.

    First. I have been thinking so much about Kimmie all this time, it came to no surprise reading about her departure. Yet, it is so painful - just writing these 2 lines brings me to tears. I didn't realize it was a second time for her - or I forgot. I can't believe how young she was the first time around... she was a brave, incredible lady.

    I haven't been able to log on for some time - on vacation... :) that was very good. Well, I can confirm that Napa is a wonderful piece of the world... we spent a couple of days in Carmel, then up with family in Napa - any place where wine and food are taken THAT seriously definitely wins a my heart. Check out the new avatar... first time my pic is not self-taken! it was shot in little italy, NYC...  

    It has been a happy time, even if frankly, I have been weepy and out of sort. I think I managed to hide it... I don't know, a whole knot of unsecurity deep down, so much of my life is up in the air - and I am not that good at change management right now. It is strange how the whole world expects that - oh well, now that one year is gone by, you are fine and dandy. Not so!!! there are still so many loose ends!!! I am trying to cover all bases - get all checked up, get the ovaries and other stuff out so that i don't have to worry about that, and then go on. I would just like to leave all that behind me... I guess that it is a similar "funk" as yours, Angie. The 11th was my one-year from mastectomy, and next 15th of August will be the one-year marker from the start of chemo. I was paralized with fear.

    That, plus so many other things, and it feels like no-one else "gets" it. I need to re-organize my life completely, maybe moving again, changing jobs, and it feels daunting. But the more I sit tight and hope it all will work out easily, the more messed up everything becomes.

    I really wish I could have been at your party Nash.... :) This time my stay had different priority, but next time I will definitely make it down to see you - and Kaye....

    Harley, any news? keeping all fingers crossed that all works out. From what I hear, occasional bleeding happens with Tamox... I am sure it will be all right.

     Hugs to all....

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

    So glad to hear your trip went well, Lilith! Have been thinking about you. Ironically, I will be in Northern CA in August as part of a road trip we're taking. Will be going through Napa. I love, love, love Carmel, BTW. And Monterey--did you make it up there? It's just a neat part of the country.

    Love your new avatar, also--you look great. And you're right--no one else "gets" it. It's hopeless to try to make people get it--sometimes b/c they just can''t. Unless one has been there, done that, it's all beyond comprehension. Other times it's b/c they don't want to get it--it's too hard and uncomfortable to think about. People just want to hear how wonderfully we're doing and how we're all going to be just jim frickin' dandy. It's like when one is first diagnosed and people randomly say, "Well, at least they caught it early", when in fact they have no idea what stage the cancer is, etc. I've just sort of given up with people. They mean well, but sometimes that's not enough.

    It's no wonder you feel out-of-sorts--the one year marks of all this are tough. Then you have a lot of life changes coming up also, which would be unsettling just in and of themselves. 

    So, welcome back, and big hugs to you. We missed you!

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  • katoMato
    katoMato Member Posts: 645
    edited July 2008

    Hello Ladies,

    Just checkin in. Hey, June - how are you doing?

    Welcome home Lilith - you are gorgeous! Is your hair dark or did you "tinker" with it? It looks GREAT. In your last avatar it looked light brown, but with light and camera angles it's hard to determine from a photo. I'm glad you enjoyed Napa, it really is beautiful up there. And I hope all your "family" time was good, and not stressful. Sorry you were feeling out of sorts. I'm with ya. I've been so out of sorts, I don't know what "sorts" to be IN anymore. 

    Nash, DH went to bed the other night laughing, when I asked him what was funny, he quoted your "jim frickin' dandy" comment . (Just thought you'd like to know!..there are not many mortals who can make "The Man of Granite" laugh.)

    DeAnn - I am THIS CLOSE to purchasing a Vege-Mix or whatever they're called. I saw the demonstration at Costco, and it was with a great deal of restraint that i walked away. Do you use a blender or something high tech?

    Going in for a follow up with my medical Onc today. She's gonna chastize me for not taking my Fosomax - especially since I haven't been doing any weight bearing exercises. That and the Arimidex together is a bad thing. Oh dear. The good news is that I've been taking about 2000 mg of D3. I'd asked her to do the blood work, it's supposed to be like 50 and mine was closer to 20 or 30  and i'm convinced it makes a difference in my attitude. I feel like me again. (A very old, achy me, but NOT A DEPRESSED ME.) There is a good article here on the board about Vit D possibly lowering bc risk, so I checked it out. It will be interesting what the years will prove. It seems to be the Vitamin Of The Day.

    Hugs to all - I'm off to see the wizard (or my onc, anyway.)

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  • lilith
    lilith Member Posts: 543
    edited July 2008

    Oh Kaye!!! the hair is mine, mine, MINE! each curl of it. I didn^t go white, you see... I couldn't, wouldn never look as good as you. I was a red-head, now it is a bit darker... will probably need a touch of help to lighten again. No haircut either - I am trying to grow it as long as feaseable before submitting to the almighty scissors.

    All the best for your meeting with the onc... :)

    I also read about vit D... not taking it, but it is my excuse for going into the sun - given that the light fixes it!!!

    Angie, great hair too.... :) it is so nice to see all of us with our new 'dos...

     Hugs!!!.

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

    Hi, girls. Glad I could crack DH up, Kaye. Smile Happy to be of service. Hope the onc went well. I saw mine recently, and asked her about the Vit. D. She suggested 800 iu via supplement daily. It is the Vitamin du Jour, for sure. Figure a bit of it can't hurt.

     I have this nutty idea about starting an ice show to benefit our little website here, as well as www.her2support.org and www.youngsurvival.org. There are a lot of ice shows (and other things, obviously) out there that benefit bc research, but not anything that benefits bc support groups that I know of. Anyhow, I was able to get in touch with the woman who started Skate for Hope in Columbus. She's a young bc gal and skater, and has built up this massive show with elite skating stars and local skaters who raise money to skate in the show. The proceeds then benefit bc research. She invited me as a VIP to the show in August, which would be totally cool, but unfeasible to attend. Anyhow, the part that I'm excited about is that she's going to call me to discuss the logistics of doing the show. I'm really stoked, b/c maybe it can go from crazy idea in my head to a reality. Both Dorothy Hamill and Peggy Fleming are bc girls, and I have this insane idea that somehow I could get them to skate in the show. Who knows. Anyhow, it is sort of fun to take the first step from delusional ideas of grandeur to possible reality. Sealed

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  • chemomom
    chemomom Member Posts: 171
    edited July 2008

    Cool Nash!!  And thanks Lilith.  By the way-- my gyn suggested I think 800iu of D just a week or so ago.  amusing.  So we go from being on state-of-the-are drugs back to Vitamin D which we should be getting from Mother nature.  Intreresting.    back to work... Angie

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  • katoMato
    katoMato Member Posts: 645
    edited July 2008

    YOU GO, NASHIE!

    If ANYONE can do it, it's YOU. (We'll be there to watch - FOR SURE.)

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  • nash
    nash Member Posts: 2,600
    edited July 2008
    Thanks, girls! I'm pretty excited about the whole thing. The woman I mentioned actually called me today, but I missed the call b/c I was, well, at the rink. Sealed Will get a hold of her next week--she's in frantic mode right now b/c she's six weeks away from her show. Makes me think that I'd better be really committed to doing a project like this! I'll be interested in what she has to say--they're holding their show at a major sports/entertainment venue in Columbus, and I can't even fathom how one brings in ice for that, etc. She's the general manager of a rink, so obviously knows about this sort of thing. The logistics are sort of mind numbing.
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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited July 2008

    Nash,

    Maybe just maybe this could be where we all FINALLY get to do our 'reunion thing'!!!!!!!

    I'm with Kaye...if ANYONE could pull this off it's you girl.....go.....go.....go....

    Keeping all my appendages crossed.

    June

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited July 2008

    Opps....hit submit too fast.

    Kaye, did the onc beat up on you?  Let us know how it went.

    lillith, so good to hear from you again.  Sounds like a really nice trip.

    I'm still hobbling around with an ace bandage around my foot.  The doc is afraid I may have an occult fracture (doesn't show up on a normal x-ray) and says if things aren't totally better by next week she's ordering an MRI.  It's not that I dread the MRI, but you all have to remember that this was a work related accident and our CEO just turns purple if ANYONE does more than visit the workman comp doc.  Oh well,  can't control it and I'm in count down phase for the next 3 weeks till I return for the re-scaning with my surgeon.

    A wonderful evening to all.....

    We're having BLT's and sweet corn straight from the garden. 

    June 

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

    Oooo, June, hope that you don't have a fracture! Yikes! But dinner sounds yummy, and very environmental to boot!

    Kaye, how did the onc go?

    Jackie, are you out there?

    Harley, how did the gyn onc go?

    Yes, part of my pipe dream of this skating benefit is to have a VIP section for my wonderful sisters from the boards. Wouldn't that be something if we were all able to get together finally? 

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  • lilith
    lilith Member Posts: 543
    edited July 2008

    Nash, that is an incredible idea... :) and ice-skating is such a beautiful and attractive sport. lets see how things develop... I'd be happy to help you should some help be required.

    And it would be a very nice way to meet all of my sisters!!!

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  • Harley44
    Harley44 Member Posts: 5,446
    edited July 2008

    HI everyone

    Gee I haven't had a chance to update ya'll on my gyn onc appt.  The guy was just TOO not worried about abnormal vaginal bleeding after menopause while on Tamoxifen, which increased my endometrial stripe from 4 mm to TEN mm!!!

    So anway, he examined me and said that he saw NO EVIDENCE of bleeding...  so am I lying? Then I told him I need something for the anxiety, and he patted me on the head and said "you don't need anything".  I HATE being patronized! 

    Yesterday the office called to check and see how my experience was... yes, I enjoyed the pelvic exam, it was SO much fun, I'd like to do it again, and soon! 

    He wants to do it in the hospital and I agree, but only if I am asleep!  But, he gave me an appt. for ANOTHE WHOLE MONTH, Aug 21.  That will only be to see him again.   Also he refused to do a prophylactic hysterectomy.

    So the nurse called to fnd out my pharmacy info., because she was calling in a Rx for Xanax.  Then the dr. called me because he said that his nurse said I had questions...  not so.  I told her that I didn't see any point in him calling but if he wanted to call me, that was fine.  He just called a little while ago, and he said that he will have the office call and set me up for an appt. on Aug. 11th, and maybe he could do the biopsy on the 13th... 

    Oh and a word of advice... NEVER go see a dr. when they are trying to go on vacation!  This guy will be on vacation for TWO weeks, and his first day back will be Aug. 11th...

    So no answers; only more waiting... 

    I didn't realize I had so many women who care about me, but they all inhabit many different threads, so I think there may be more threads that I need to update...

    Thanks for asking.

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  • lilith
    lilith Member Posts: 543
    edited July 2008

    Harley - that ob-gyn sounds like a looser... a real unpleasant experience. :(( can't believe what an *** he was. I am with you - I can't believe he tries to patronize a cancer patient - I feel that sometimes we are better educated in our area than most docs!!! how sad is that...

    well. on this subject, I also had a surprise, coming back from vacation... my pap test was slighlty abnormal... shoot. Nothing to worry about, just another monitoring in 6 months. I've decided not to worry about it. It isn't even a lesion anyway... probably just a false alarm.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited July 2008

    Lillith

    No worries about the abnormal pap test.  I have read here that after chemo, our paps can come back abnormal for awhile.  I think they say not to go for a pap for at least six months after chemo.  I didn't know, and I went for my pap in Feb., but I think it was ok.  I'm saying that I think I was told that the pap was normal, because if I didn't hear anything from my dr., then I can't be sure. 


    Thanks for the encouragement!  Unfortunately becuase of my insurance I will probably have to keep seeing this dr... he is an ob gyn oncologist!!!  YIKES!  HE SHOULD KNOW better than to be patronizing to a CANCER patient!!

    Anyway, I think he was mad that I complained about him.  AND the nurse was mad, cause she had to come in on her day off to call that Rx in to the pharmacy!  I guess I won't get hugs from her next time I go back!!   

    Thanks again...  I am just so fed up!  and I'm still kind of scared about having yet another biopsy!  That is something I told this gyn onc, that the last biopsy I had.... was cancer.  He said "You had another endometrial biopsy?"  I said ... NO.... the breast.   What an idiot!  and this just shows that he wasn't listening to me...    I read that drs. will only hear what you say in the FIRST 18 seconds of your appt. with them.  So if you have anything important to discuss, you better do it in those first 18 seconds!!

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

    Yikes, Harley, the gyn onc sounds like a real twit. Keep us posted on the biopsy.

    Lilith--I had an abnormal pap once many years ago. The next pap was fine. And like Harley said, it could be from chemo. I just had a pap this week, and will be interested to see what the results are. Hopefully your's is just a blip, too. 

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  • Monkeygirl61
    Monkeygirl61 Member Posts: 49
    edited July 2008

    Hi everyone.  Harley that just pisses me off.  BTW I hate that expression but nothing else seemed to fit.  How 'bout I come down there and smack him around a few times?

    Welcome back Lilith.  I too have had abnormal pap smears in the past.  The second time is usually okay.  I've had 2 procedures when the 2nd one wasn't and the next one was fine.  I know after all we've been through it's hard not to worry.

    I love watching ice skating.  I tried once but my ankles were too weak.  It's very admirable for you to even consider taking on a project like that.  You know we will support you anyway we can.

    I've been taking Vit D even though I spend alot (probably too much) of time in the sun.  DH and I went to Philly last weekend.  We had a great time but I'm so glad it's the weekend again and I only have 1 commitment, a surprise 50th bd party.  Take care and have a wonderful weekend.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited July 2008

    Thanks, Tami.  I wanted to smack him, too!  I just hate it when the drs. are so patronizing to you.  I can't believe that he PATTED ME ON THE HEAD! 

    Even if you are in the sun alot, do you still need to supplement with vitamin D?  I take the calcium with vitamin D, but I always wondered.

    Have a great time at the birthday party!!

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  • lilith
    lilith Member Posts: 543
    edited July 2008

    I guess the D vitamin cannot hurt... anyway, the sun is needed to fix it in our cells, so there it goes.

    Thanks for the cheering up on the pap test. from the paperwork, there is a bit of HPV - unalarming, but to be verified in 6 months. Anyway, in my plans is to get an ovariectomy then - if there is any doubt, I'll get it all out... I am for the 0% risk policy!!! So anyway. I am not really worried, as I also had such a problem before - a long time ago, and it was clear the next time.

    I feel so good, well and healthy (even if a wee bit heavier than I would like), that I cannot believe something bad is waiting to engulf me right away... :)

    Lots of hugs - and happy partying!!!

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited July 2008

    Hi Ladies,

    I've been reading but not responding.  My husband went to Singapore for a business trip and I've had nonstop company.  It's been like a hotel.  Everyone decided to keep me busy.  But it was all family and fun but my house was inside out and upside down!!!! I had all my nieces and nephews and 2 sisters-in law.  Now that they're all gone, I have a sinus infection and bronchitis.  I guess I had too much fun???? Who the heck knows.  I give up.  But I will tell you it felt great to feel "normal" again (at least for a short while).  Hubby is coming home tonite so the party is over.  LOL  Have a great weekend everyone.

    Hugs, Jackie

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  • katoMato
    katoMato Member Posts: 645
    edited July 2008

    Hi Ladies,

    June - Dh and I have a company and, like your employer, we both blanch a bit if someone has a WC claim. We are in the construction industry, and you can imagine (or, maybe you can't) the fraudulent claims that happen. However, yours sounds very legit. Everybody saw you fall, (witnesses) there was something (correct me if i'm wrong) on the floor that caused your feet to go out from under you - you're not trying to retire to Bali on permanent disability, you just want help with the medical bills. I dunno. Sounds reasonable to me. THATS WHAT IT'S THERE FOR. Yes it increases your employer's x-mod percentage, which ultimately raises their rates, and they'll be encouraged to have idiotic "classes" on "workplace safety" and "ways to recognize and prevent water on the floor" and "the proper way to walk on the floor to prevent slips and falls" - it really is laughable (if it wasn't so expensive). But again, that's what it's there for. The REAL cases.

    Lilith - I've been reading about HPV, and it's relationship to cervical cancer. (http://www.cancer.gov/cancertopics/factsheet/risk/HPV )   And you're right to not be too worried, but do keep an eye on that - expecially with your genetics. And, with June, i'm crossing all my appendages. (Honey, quick - get the camera!)

    Harley - I don't know if i'd take more Vit D3 unless my bloodwork showed that I was low. There is some specific test you ask for. I can't remember what it's called - it's on these boards somewhere. I live in the southern California desert. Cactus, roadrunners, sidewinders and heatstroke. I get PLENTY of sun. Something about aging makes us not metabolize it as well as it did when we were younger. AND i think it has something to do with the food we eat. (which is a good segue to....)

    DeAnn - I did it. I broke down and bought a Vita-mix 5200. Whoopie! It sounds like Airforce One is taking off from my counter - but i tell you, NOTHING ESCAPES THOSE BLADES. I love it.

    Nash - where would the ice skating benefit take place? (besides the usual of course, legs, buttox, upper body strength, increased balance.....) GEOGRAPHICALLY SPEAKING.

    Hi Jackie! Wow. I wanna go to Singapore and have my company pay for it. (Actually, staying home with you and all the fam sounds like fun too....sinus infection and bronchitis not withstanding.)

    Tami - a surprise 50th birthday party for someone else? or you? (now, kato, that's just stupid. If it was for HER it wouldn't be a surprise, would it? oops.) 

    Update. When I grovellingly (i just made up that word. It's nice, don't you think? and i'll use it right there.) admitted to my onc that i hadn't been taking the Fosomax, she asked why, listened to my reason (I just don't want to take any more drugs than i absolutely have to, and i'm loading up on the Calcium, D, K) while i hadn't been before the bone scan. And said "ok. I understand completely. Let's just schedule another bone scan one year from the last to see how you're doing."   I LOVE THAT WOMAN. (Nashie...I'll share. She's in Duarte at City of Hope.)  So, all is well.

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

    Hmmm, Kaye, I may just have to get myself up to Duarte to see your onc. She sounds terrific. I'll have to see how long a drive that would be.

    RE: the skating benefit. I'd have it in San Diego. Would probably start small at my rink, with the goal of eventually having it at the Sports Arena. I'm going to call the Skate for Hope gal on Monday, and I"ll be curious how many years (this is their 5th) it took them to really get going and be able to afford a big arena. 

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited July 2008

    Nash,

    I think it's a great idea and I would love to be able to attend.  My husband has relatives in the San Diego area and it would be a great excuse to come back to California.  We always stay at the Bahia Motel.  I love it over there.  Anyway, you will definitely be successful.  If I can help in any way, please let me know.

    Hugs, Jackie

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

    It would be so wonderful if you and DH could come to SD, Jackie!

    I called the Skate for Hope lady today, but she was running out the door, so we'll have to chat next week. She did say, however, that she works pretty much full time on the show for the three months leading up to it. Yikes!!!!!!!!!!!!! She said their printed program is 64 pages. She lets the skaters give roses to the bc survivors in the front rows, with a recorded message for them over the speakers. So she was in a recording studio with the skaters all day today, recording messages. Holey moley! OK, don't think I can get something like that off the ground the first year! On her website, it says she's raised over $100,000 for bc research. I'm just blown away by what she's done.

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

    bump

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