Great saying about depression
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It was a tech but she was probably my age said she's been doing it for many many years when I commented that I dont know how they know what they are looking at. I go to Hopkins so I can only imagine they hire the best. She did check with the radiologist but he was satisfied with the pics so he didnt feel the need to examine for himself.
Thanks for asking..you know I thought of all these questions after I left. I forgot how overwhelming tests can be and I was a little too frazzled to get all my questions answered. I will be more prepared next test.
Diane
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Diane--I've had 4 or 5 TVUS and they shouldn't still be hurting you! Do you have something you can take? Definitely ask them why the pain and what you can do about it. Sometimes those techs aren't aware of their boundaries and peoples thresholds of pain. Both you and Kate need to let us know ASAP when you get your results--we are all so concerned for you both.
Today has been a rough day. I'm tired of this damn disease and how it takes away the brightest stars. I'm tired of seeing pain and worrying and thinking and wonderin. for my sister who is TN. for my friends on here that are IV. for my BF's sister who was diagnosed last week with colon cancer at 45. i just hate it. and i'm angry. and tired of it all.
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Diane, my second TV US hurt me so bad I almost passed out, I actually got gray vision. I told the tech she was hurting me WAY too much and she said she was trying to find my ovary. I told her I didn't care about my ovary, just to stop!! It hurt for days, I think she bruised me. Do you feel bruised? I actually expected to see blood, silly me, I don't even have a uterus! Do make sure the doc knows the pain level you have been in.
Claire, we can only watch as others take the steps on their own journeys. So sad really....
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I have a "septate uterus" (a divider down the middle) that is very hard to visualize in the ultrasounds. After hearing your experiences, I am so glad I walked out of that doctor's office. Now the challenge is to find a new doctor!
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I used to have US every visit from 2002-2010 and it could be tender at times but it NEVER hurt like you all are describing. I can see how it could hurt if they were rough but he was very gentle and careful as YES it is very sensitive. I think before I ever have another one I will make sure they can do it gently. I'm so sorry, that is just awful.
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thanks all you ladies for your warm thoughts.. last night, 1/2 asleep, i woke up, and was upset.. so i reached for the phone to her.. i guess the numbers changed to long distance, now.. i don't even think "roaming" will connect...
i had a physical "shock" reaction yesterday.. my body temp went done, and a pair of sweats, a jacket and two pairs os sox didnt help.. mur reminded me i did the same thing when my dad passed, so im not worried..
Life gies on, in spite of us.. i have to see the pain guy today.. won't HE be surprised when he sees me all bundled up in Fla heat!!!
He was the one who made up the protocol for my demise, and marybe took all the papers hone with her, and followed it.. leave it to her to let me know it works!!!
i can't believe it, a month ago, she called mur late at night, sure i'd died.. now, its her, and not me that passed....
I'm concerned, didel.. my ultasound was painful when she did it, but not after. i think you need to let the gyn know..
they always use the techs, cause they're more trained to do it than the docs..even when i was preggers, they di it, and that was in 100 years ago!
im so grateful for you guys to encourage me, and ask me to come back.. i've just been dealing with crap from the website. but read almost everyday.. you really have become my girlfriends!!
one of the reasons Marybe and i got so close was because we both could say to each other, the things we wouldn't say here.. and for that, i'll always be grateful. but you guys have stepped into the breach, already..
long story really long, im okay...3jays
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3jays I wish you could feel my arms around you right now. I am so so sorry you are experiencing such pain and I wish I was there to comfort you in person. Just know we all love you and are here for you anytime you need us.
Golden my twin sister has the same thing. her uterus is divided in two and with every pregnancy we held our breath that the baby was growing on the bigger side. She lost two late in pregnancy because of it (born way too early). My Oldest nephew was breech and very early (28weeks) when he was born. During the emergency C section they discovered it. I never knew if I had it too since I never had a baby or an US before.
Speaking of which...I got my US results. My gyn called (he got a copy) to say I had to come in right away for a pelvic exam and to schedule another TVUS in 3 months. I said to the nurse, can Dr K call me back and explain my results. No one has told me a thing. So of course I was panicked and my GYN (God Love him) he knew it too. So he called me back immediately and told me I have two cysts (did not mention size or location) and that they did not appear to be malignant that they were one of two kinds...Endometriomas (also known as Chocolate Cysts..and do NOT google it on a full stomach) or Hemorrhagic cysts. Both collect blood but in different manners and the Endometriomas get bigger and bigger whereas the other kind go away on there own. Thus the repeat of the TVUS to determine which kind of cyst it is. Then he said what happens is with the Endo cyst...this is gross...I am warning you...when I get my period instead of bleeding out the cysts fills with blood and just gets bigger and bigger and must be removed. I told him my period has been very irregular since chemo and tamoxifen, He wanted me to schedule the next US 3 weeks into my cycle but I dont know when that would be. He also thinks the pain I am having is since the US is inflammation from being probed...I am very delicate (he didnt say that I am) He told me to take Aleve and I see him next week so hopefully the pain will go away. So thats that...so far no more Cancer Schmancer. which makes me VERY happy. Although my onc is looking for any reason to yank my ovaries..I prefer to just have the cysts removed. My gyn said following Novembers US we will discuss treatment options. I love him he knows I am a worrier and I appreciated him getting back to me. Now I gotta call the onc and see what he says. I plan on going there to get a copy of the full report so I have more information.
Hope everyone is having a good day... Kate thinking about you. Hope you are nicely sedated and properly cleansed
Love you ladies! ...BTW Kathleen where are you???????
Diane
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Diane glad to know you have a plan and no evidence of cancer! Did I miss something? Is Kate having a colonoscopy?
Still black areas on arolas and some bleeding but I am trying to take a watch and see approach this week.
Hope everyone is having a day they will want to remember
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3Jays!!! Hang in there and hold on to us! We are here for you and care and support you! I know what you mean about how your body does weird things from a huge shock. I broke out in hives when my Mom died - had no idea that could happen. So bundle up and just take care of yourself... Marybe would be worried about you if you didn't take care of yourself. But so sudden and such a shock so just take it easy- wish we all could be on your door step to help you through this.
Yes kate is having the colonoscopy and endoscopy today... poor thing but at least those test will be out of the way...
Diane - whew on the ruling out of cancer and yes I have heard of both those kind of cysts. Interesting and very sad about your sister and pregnancies - did they say if yours was divided as well as arn't you all identical? Sorry you are in such pain but thank goodness you have a sweet doctor who understand worry.
Hopeful- when do you go back to the Doc for the next check up? If you are still worried call the doc's office just to check so this worrying is awful and anything to alieve it the better!
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Stanzie actually I have had both like Kate and to me it is easier to do both at the same time. It is just that darn prep right that is so yucky. I am taking a watch and see approach. It does not appear to be getting bigger. I think he is actually out of town this week and I am crazy at work. If it gets any bigger or starts to drain I will. Thanks for caring.
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Hopeful - makes sense to do both... prep is ghastly though... Good I'm glad it isn't bigger just hate for you to be worried with all the surgeries you have been though.
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Diane--so glad you got the all clear for the down-there parts!! I had a cyst all during treatment, showed up when I started chemo, and they did the lets watch and see every 6 months cuz it was small. And by luck of nature, 6 months after I ended tx, it disappeared. Poof!! Just wanted to hang around and keep me on my toes--and keep my freaked out a little while longer. Hopefully, yours will go poof too when you're not looking.( BTW, TMI but my cervix is tilted. EVERY SINGLE TIME i get examined, "do you know you have a tilted uterus?", no sh*t! I'm 51 and had 2 kids, do you think thats something new?? : ) )
Hopeful, how big is the black spot? Is it gettting better, even just a little bit? When do you see the doc next? What is the next step? My stage 2 is next week, just beginning to get a little nervous. . .
3jays--started my outdoor project today, maybe if I can keep it going, I'll send you a pic.
ps Barbe-it still sucks.i just don't like the helpless feeling. . .
Kate-- hope you came out as clean as a whistle!! i know you want to know what is causing you trouble, but I still hope they don't find a thing!! You don't need anything else on your plate.
Stanzie-how is your daughter doing? Behaving,I hope! Do you want all of us moms to sit her down and snap her out of it? A little mom intervention?hehehehe, that would be a sight!
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cmbear you are so funny, mine is tilted too! Not sure what the impact of that is. The area is about 2cm I guess. It has blood on the gauze bright red just a little when I wash it so I know there is blood supply. See the doc on the 13th in the late afternoon. I know it is not getting worse and my hero husband thinks it is getting a bit smaller. What do you mean your "stage 2". Is that the exchange for your permanent implants or nipple recon? Sorry dense I guess. We all have been through so many things our stages and phases may not mean the same.
I hope that one day each of us will wake up and not even think about BC!! That our lives will be full of events that don't revolve around labs and MRIs and surgeries. Wouldn't that be a dream! And funny how for most of us until this diagnosis we couldn't have even imagined the time and energy it takes to have BC.
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Hey we could have a tilted uterus club- mine too! LOL!
Claire, thanks for asking... keeping her at a distance drove her nuts so by Monday morning as I was working on the boys clothes and ironing and such she come in and asks if I can help her with make up!! No I didn't pass out but I could have! She has never worn makeup or had any interest.... so she was nice for the pictures amazingly! Whew... but I think I'm going to keep up the distance thing - it is really working
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Hale, hale all members of T.U.C--who knew we would have enough to start a club?? Hehehe!!
Stanzie--I had a Diep on June 4th. My BMX was 1/18/11. They couldn't do any sparing for me, and then rads so my MO and RO wanted me to wait until this summer before my recon. This stage 2 is where they fat graft and built my nipples and aereolas. So I'm just hoping mine take ok. I have noticed some serious stiffness in my affected arm when I lift it and try to stretch. Need to ask for PT next week when I see my docs.
Stanzie so glad you daughter is coming around! Maybe she was feeling a little smothered(not that you were doing that--who knows why teens feel the way they do!) and the space made her realize how much she liked having you around. Y'know teens are like cats. . .won't come when you call, but when they want to be fed or petted they're all over you!!
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Hey everyone- I'm back! Feel like s*** after the prep for the colonoscopy but shouldn't since there isn't any left. lol! Anyway, both came back perfect! They said I don't have to repeat for 10 years and I told them they better come up with a better system by then. What a miserable night and morning. Who knew the things your body could hide in there? (Sorry, TMI? lol!) That is the longest I went without any real food, 27 hours, and I was not a happy camper. Gives me a new appreciation for our spoiled American lifestyles, though, and my stocked pantry. The worst part, though, was the whole i.v. in the neck since they can't use the arms anymore with my LE. Yowza!
3jays- I've been thinking about you all day. Hope you could find some peace in your garden.
Diane- Sorry you are dealing with the cysts. I heard those can be pretty painful. Glad it is not something BC related though. Hope we can get through all this testing and get on with our (fabulously, exciting) lives. Hah!
Stanzie- You remember the cartoon I put on Facebook? "Don't yell at your kids. Whisper instead. It's scarier!". I think what you're doing in a way is whispering by keeping your distance. It's totally unexpected and you've thrown her off her game. Glad to see you're seeing good results with it. If not, I like Claire's suggestion! A mom intervention! (We'll even throw in an aunt Diane!)
Hopeful- Sending you some healing thoughts that thing will start to clear up. (((hugs)))
I'm feeling strangely left out because I don't have a tipped uterus. lol! Maybe I could be a an honorary member of TUC?
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OMG you ladies are cracking me up over here!! I dont have a tilted uterus but my gyn said I had the tiniest cervix he has ever seen...and he has seen a lot! Claire you are a hoot!! I have never had cysts and now I got freaking chocolate cysts and kidney stones!! WTF!?? I am hoping its not caused by Tamoxifen. My onc did say for now I would be staying on T so i hope he's not considering stopping.
Yes I have been googling all day...seriously cysts are gross. I called my onc but he was teaching today ..he's a onc professor at Hopkins. But the nurse said he would be calling me tomorrow and she put a copy of all my labs and the radiologist report in the mail to me. Gosh what a difference from my last onc's office everyone is so nice. I do feel relieved to have a plan but I am still in pain. So I am hoping tomorrow my doc can rx me some ibuprofen 800 mg. I cant believe I have to wait 3 months, hopefully it wont be so bad. docs said since I am already inflammed did the US it just inflammed it more he said I should feel better in a couple days. I am putting Ice and heat to see if that helps. If not I have a drawer full of meds to choose from.
Hopeful I hope that is part of the healing process. I would call the PS just to make sure.
Stanzie kids love me ...even Coach Diane that whipped a bunch of pre-teens butts in field hockey! I welcome the challenge.
Ok I gotta get myself all ready for my boyfriend Bill...he's speaking at the DNC and I got a front row seat.
Good night ladies..thanks for all your support!
Diane
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Hey, I am a member of the TUC. That is really funny. I have never talked about it to anyone else beside GYN. Who knew how many we are.
Kate so glad you're cleared and cleansed. LOL
Diane hope you get relief soon
Stanzie, too funny about your DD coming around after the silent treatment.
I had a strange appt with my pulmonary doc yesterday. We just don't connect very well. He is suppose to be the best but I think I need to keep looking. He told me a story about how he had a woman with my same symptoms and she ended up going to Tibet and climbing a mountain and once she was above the tree line she could breathe without coughing. WTH is that suppose to be telling me? He is just stumped and perplexed by me and I am sick and tired of feeling this way. Anyway he ran some blood tests and some of them are coming back funky, but I don't know what it means yet.
My DD sent me a card today I thought I would share it with you.
Advice from the night sky
see the big picture
be a star
keep looking up
don't be afraid of the dark
stay full of wonder
expand your horizons
turn off the lights
She wrote such nice things to me that it made me cry. but it was a good cry not the big boo hoo, snot running down my face kind.
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Kate - glad all is clear and now you can eat all and everything you want.
macatacmv; your pulmonologist is very strange for making that remark. Is your wbc or rbc count elevated or low? Have they done a biopsy? (sorry, I'm a RN) Ruled out asthma or an allergic reaction?
Hey, I have a tipped uterus too!
hopefulhealing: yes, a spot of blood is good and that you don't see any green or yellow drainage is also good. I hope you are near to the end of your road for surgeries. I opted out on having nipples and aureoles made, so have 3D tattoos, which look great (I think) and make me feel good. My skin over the implants was very fragile and after I had the 3D done, my PS said she was happy I was happy with the results as she wouldn't of made nipples for me - not worth the risk to my LD flap, pec muscles or the implants having to be removed and starting all over.
I too hope for the day when I can go more than one or two days without thinking about bc. If it wasn't for my friendship with you here I would be worse than crazy.
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Macatamv my friend who was recently dianosed with ILC has this bacterial lung infection..I forget the name..will post when it comes to me. Anyhow, its this infection where she sort of aspirated the bacteria and initally she thought she had asthma but her cough was always wet and some days she could not stop coughing it was terrible. Well she was seeing this pulmonologist that put her on antibiotics but after she had a chest xray that revealed progression of the infection but the doc did nothing. When she was diagnosed with ILC her (and my) BS did not like how laid back the pulm was about her condition. The BS and the Pulm got into a fight because the BS said there was no way he could put her under for surgery with her condition and that he didnt like how he was treating her. Our BS got her in with THE TOP pulmo in the US..Dr. Linda Barr. Two weeks after seeing her and getting new meds she sounded better ...a month later xrays showed the infection was reduced and her new combination of meds was working. She also put her on an inhaler and nebulizer. Amazing her other doc didnt. You should absolutely seek another opinion. You poor thing I hope you get some relief soon.
I want a tilted uterus! I am gonna ask my gyn when I see him next week how its lookin'
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Wow, who would have thunk so many of us T.U.C.'s out there. All those times the gyn made me feel like it was some freaky thing to have. . . fighting allergies--at least I hope, don't want it to be a cold or turn into one before next week. Supposedly ragweed and chenopods are strong--what in the heck is chenopods??? I'd hate to think I'm allergic to something I have never heard of!!!
Mac, your doc is trying to send you on an exotic trip to the Orient!! How nice! Is he paying??? Is he giving up or has he ordered more tests? I agree with Diane, maybe another opinion(and just a new doc) might be what is in order. It is so very frustrating to have symptoms that are so very real, and docs who seem befuddled. Where is House when you need him?
Kate--how exciting, an all clear report!! I sure wish I was on the ten year plan, I'm on the 3 year. Found a sessile (?) polyp that they are "watching." Gotta love a disease that grows so slow that they don't have to see you for 3 years!!I just saw a story about the prep free "virtual" colonopscopy. Maybe in 3 years that will be the norm. A girl can dream.
So question out there. Are any of you on Effexor? I just started it after my Diep and beginning to see a change from the old anti-d. Course, I switched to help my hot flashes from tammy but it hasn't helped that a bit. Other issues. Good, I guess. More energy in p.m. Still sorting thru what might be results of change and what is me coming out of my 8 hour surgery funk. Hmmmm.
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oh, and did I say it makes me a chatty Cathy. Wish I could figure how to control the energy.
Like doing yardwork!
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Claire if you harness the energy come down here and I'd be thrilled to have my house cleaned and yardwork is good too - LOL!
Mac- Gosh not sure when it was but I had somethng similar as well and finally went to a pulmonologist who ran a tremendous amount of tests and put me on inhalers and all sorts of meds. Well it didn't work and when I went back to my internest he put me on antibiotics and it finally cleared up but I couldn't breathe and it was very scary..... so keep telling them it isn't working - the story of the trip is odd... unless maybe he is ADD and his mind wandered....
Diane- how is it that I KNOW you are going to ask your gyn for a TU! LOL! I'm sorry about the cysts...tiny cervix hadn't heard that one but my gyn cause I had gone into menapause at 37! he would joke doing the ultra sound that I didn't bring my ovaries with me... How sweet to feel like a dried prune in my early40's which was when I went to him...
debbie- boy are we lucky to have an RN here! Hopeful hope that makes you feel better....
Mac- beautiful poem - makes me teary as well.
Diane I can see how great you would be with kids- feel free to visit anytime you need to get away.... I could use the onsite advise. Diane very wonderful about your bf speaking- how long have you been together?
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macatacmv- Sorry, but think I'd give your doc his walking papers. Tell him you have a story for him about a doctor that went to Timbuktu and suddenly developed a bedside manner.
Claire- Cenopods? Sounds like some kind of creepy sci-fi movie- "Attack of the Giant Chenopods"!
Diane- You got me too with the boyfriend comment! I was thinking boyfriend? She hasn't mentioned a boyfriend! I believe, everyone, that her bf would be ex president Bill Clinton. lol! Yes, that was a helluva speech. It has to go down as one of the all time greatest speech I've heard in my lifetime.
Feeling kind of mushy after my "cleansing" though the good news is my stomach hasn't been this flat since I was in my 20's! Hmm, maybe I should do a colonoscopy every month. It's cheaper than going to the gym! On second thought....never mind. I am determined to start eating better, though, now that I've cleaned house.
Speaking of cleaning house, maybe I should get some Effexor so I can have energy to clean and garden!
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good to see everyone today..
Kate, im glad your results were as all clear as you are, now lol!!
Claire, i have many allergies, but i'm gonna google that one when i get off, for sure.. I know you're in Fla though not as south as me. this is a bad time of the yr for allergies, my eyes are driving me crazy!!i dont know WHAT the name of the red beads on the top of the umbrella trees are called, but im WICKED allergic, and they're out. we asked our neighbors if we could cut them off, and they said sure, so here's hoping my eyes will improve.. maybe thats it huh?
im really ticked today.. but im sure its me. some of the commments ple say on this thread are really insensitive; and i TRY to go with the flow.. but, sometimes it really gets a girl, ya know?
I wonder if its worse, cause its online, or are these people like this in real life?
I know i'm upset, and sick, but to try to tell me its time to "get on with " the newbies, and time for gloom and doom is done...really?? its kinda like when ple tell us we "should" be over our bc experiences... really???
sorry, but i just had to get it out...
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ok..done, and thanx for listening.. im sure i'll catch it for saying it, but im beginning to not care what people think.....0
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ok, claire: dr. google says chenopods belong to any grasses, weeds in the ragweed family, and our season in fla is sept, oct, and november.. i'm getting my rx for clarinex filled today lol
the dr needs to speak ENGLISH!! i agree with the others, check on a new doc! my ?ENT was the one who mentioned the umbrella trees to me.and does the rx for clarinex. can't take allegra, or claritin.. the allegra was the best for me, but couldn't live with the backache se...
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3jays, wow I missed that. Was it on this thread? This is not something you ever "get over"! It is with you the rest of your life. You learn to live with it. And some days it is easier than others but it doesn't go away. It changes your body and life forever. We work very hard to keep it from consuming us and to be honest on some days that is hard depending on whether we are facing our oncology appt. and labs, surgeries, complications, a new ache or pain. I would say that you are where you are for a reason. No one has your journey only you. And only you knows what it is like to travel it. The insensitivity of some of those around us only make it harder.
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3jays- I cannot believe someone would say that to you! WTH? Everyone travels this road at a different pace because we're all also carrying other burdens along with BC. These burdens can be physical, emotional, psychological, financial- there are so many factors that can slow down the process. You are dealing with more than 10 people put together and it just angers me so much that someone would say that to you.
I finally got the call back from my BS's office. The message was she does think the findings on the CT scan are suspicious (her words). She hasn't received the CT with the images, though, and wants to review them. She will meet with the multidisciplinary board to discuss and will get back to me about the next step. They said it could take up to 2 weeks. The recommendations will either be further testing with a medical oncologist or wait 3 months and do another bone scan. Definitely not comfortable with the second choice. If I'm going to end up being passed to a medical oncologist anyway I need to find someone closer to home. The whole reason for going back to Tucson (2 hours way) was I thought she would be the one I would meet with for further tests. Just posted a new thread asking if anyone had an onco they liked in my area. I called the new cancer center by me, too, and it's quite a process to get into see someone. I'm feeling a little overwhelmed since I don't have a doctor in mind. On top of all that my DH has become really withdrawn and my DS has been just awful. Think I'm about to dissolve in a puddle of tears. Time to call my mom.
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3Jays I am so sorry someone upset you. I have had similar experiences with some people and I just block them so I dont have to read their insensitive remarks. Gosh I hope I didnt say anything to upset you cause I agree wtih Hopeful ..everyone has their own journey and moves through phases of this at their own pace. You have had more than your fair share of issues and I applaud you for having the ability to keep moving. Especially after suffering the loss of a friend. I dont think that is something you ever "get over"I just think some days will be easier than others.
Kate I am sorry you are feeling blue...I swear I am going to send you a plane ticket...I need a drinking buddy after my deadline passes. It's great that they are sending your results to a tumor board. My case was presented at tumor board and it definitely gives you confidence in the treatment plan when a whole team of oncologist, radiologist, surgeons, nurses and techs all have input on how things look etc. Although it stinks to have to wait ..you are lucky to have so many experts review your case. I know its hard to not get ahead of yourself but try not to. I would defnitely consult with an oncologist and take your time deciding . Honestly a good one may take a month to get in to see. So waiting 3 months might not be so terrible. Didnt you recently have a comprehensive blood panel? Thats all an oncologist is gonna do and review your scan. maybe order a PET but if your blood work is good my guess is they are not going to order a scan. I have never had a scan because my oncs sad it wasnt warranted. I am sorry I know this all sucks and waiting is the hardest part. I will wait with you!!!
So I know you are gonna think I am making this up BUT...i got my radiologist report from my US and YES I have an ANTEVERTED uterus. Which I had to google and TIPPED is...ha ha ha
Ok on not so funny part...I have 3 fibroids and 1 cyst. and my left ovary with the cyst is twice the size of my right ovary. Also my endometrium is 9.2mm...normal is 2 - 3mm (or so I read online) so my oncologist actually called me earlier (thats right and gave me his cell phone!!) He said that the cysts and endometrial thickening is most likely due to Tamoxifen but he wants to talk to my GYN before making any decisions to take me off Tamoxifen. I see my gyn the 13th. As much as my GYN tried to comfort me with "ït doesnt appear to be malignant" my onc wouldnt say that. He did agree that I will most likely have to wait 3 months to repeat the test to definitively determine which type of cyst it is. Endometriomas can be cancerous All my fibroids and cysts are measuring 2.0 x 1.8 x 1.5 so that sounds large to me. Anyone??? so now I have to wait a week to see my gyn and I am in pain..I cant imagine waiting three months and feeling this way so maybe my gyn will not make me wait. I am worried that docs will gang up on my to have a hysterectomy and ooph. Which I have zero plans on doing at my age. I am not going to worry about anything until I see my gyn. Fortunately for me I am too busy with work to stress over it. Any nurses out there wanna gimme their 2 cents???????? for free
Hugs to all...sorry for the long post. I had a lot to say...oh and btw HA HA about my BF Bill!! Kate you were right..that was an AMAZING speech. Nobody does it better than Bill Clinton.
Diane
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