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August 2010...anyone starting chemo besides me?!

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Comments

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Good day, warriors-

    I am getting my liver MRI next week  Let's hope...!


    Omaz: congratulations!!!!!!! Good news! I am so happy for you.

    Calamtykel: yes, sounds like a municipal-make-money-quick scheme. That is a shame. The state charging more based on numbers they got from the "state." Something is wrong. Best of luck-

    Ginger: sounds like someone covets the tenets of "How to Win Friends and Influence People" by none other than the great Dale Carnegie! Deliver a compliment to cushion and then the bad news..!

    As for Tex's dd, it was viral, she was released from the hospital yesterday, got sick again, went back and was released again. She is home now hopefully getting better!

  • omaz
    omaz Member Posts: 4,218

    Thanks! I go back in 3 months.  I do have to lose weight though because I am very nearly 15 pounds over what I was at the beginning of chemo.  With chemopause my metabolism seems to have slowed way down so I really have to eat less now to lose weight.

  • sptmm62
    sptmm62 Member Posts: 527

    Thanks for the update on Tex's DD Lizzy! Good luck with your MRI next week.

    Ginger:  Great advice that I will definitely keep in mind.  I have had more than my share of problems with the insurance company and it really is frustrating.  But you are right, the more "professional" you sound, the more reasonable they are.

    Cal:  Sorry to hear about the insurance.  That sucks.  Unfortunately when dealing with the government, or insurance agencies, they take all the time they want and there is absolutely nothing you can do about it.  I would pay the premium and just keep on top of them for an answer.  Hopefully it won't take too long.  The whole situation just stinks.  Good luck with your appointments.  Don't reschedule them, just do it and then celebrate the Christmas holidays without it hanging over your head. 

    Omaz:  Interesting, I just got home from my onco appointment where I was given my prescription for Arimidex. Not sure if I am happy about that or not.  I told the onco of my concerns, since I am tolerating the Tamox so well and I worry about joint pain that I have heard about on the AIs.  He said that I could always switch back if it is too bad.  So, he told me to get through the holidays on the Tamox and when my refill is due in January start the Arimidex.  He said we could give it a couple of months, and if the side effects are bad, he will switch me back to Tamox.  I was okay with that.  He said that the studies have shown that the AIs are a few percentage points better than the Tamox if you are in menopause, but it is not a big deal if I go back to Tamox.  So, I thought that was cool.  He also pointed out that at our age, being on the menopause brink, I could get my period back when I go off the Tamox and if that happens, I have to return to the Tamox because I was not really in menopause.  I certainly hope that doesn't happen...the only good thing to come from all this chemo stuff was the loss of my period..LOL! Anyway, I guess you and I will be the AI guinea pigs for the rest of the girls on Tamox.  Hopefully, the switch goes off without a hitch! 

    Rachel:  I hope you week gets better.  Sounds like work has been rough!

    Tex:  Hope everyone is feeling better down there!

    Have a great day everyone!

    Debbi

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Omaz: a steady of oxygen, diuretics and ex-lax -u will be in great shape in no time.  I mean eventually the hunger goes away!!!!!!!  All I can say is "effin" bc, "effin" chemo and "effin" metabolism combine to make us have to work 10xs harder than we used to for paltry results.   My father must have lost 40 lbs with lung cancer.  Everyone loses weight with cancer....why did we all get the one that makes you either hold steady or gain?!  Is nothing fair in this world?!

    My new boob is bruising a bit and the clot is going to have to be moved on this week.  Here we go...! 

    As for AIs, they won't put me on it at all, cycle returning or not.   It is because of my age that they feel even in the absence of my cycle it does not mean it is over....ugh!  

    Sptmm: Good to have you back, Deb.    I missed you ;)

    Watching Rock Center tree lighting ceremony on NBC.  I probably told you all last year but my favorite things about the holidays are the music and decorations.  I love it! 

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Lizzy there may be a bit of Mr Peale in that after all.  Mostly though what U try to do is remind the person that they are human and thet I recognize the difficulty of their jobs. It isn't actually just a ploy but a real recognition of the person. It is far too easy for workers to slip into the Zimbardo Prison experiment guard mode. I would have made a lot more money if I had worked at public aid but I knew I would go crazy there and hate myself too.

    Omaz, yes I do have neuropathy in my hands and feet. It has gotten much worse in my hands since AI  and somewhat worse in my feet. 

    Being off the AI for a break has given me some clarity in my thinking that I thought was gone forever. No if the Doc can tell me, or if someone who knows can tell me that "I, me" will always return then I think I can manage this better. I do not want a recurrance but I also do not want to live half my life and feel like I am in fog all the time. I feel awake right now, capable of functioning. I sat through a two hour software class tonight and understood what was being taught. I could not have done that a week ago. I will develop some philosophy about this and be able to go forward then. 

    Love and hugs all Ginger

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Good day, warriors

    I am sitting here, presumably healthy and not looking forward to that MRI next week!

    Ginger: that is wonderful, wonderful news that you feel so back in touch with yourself mentally after being off the AIs for only a short time AND that also bodes very well for the future. I am so happy for you! Best news I heard in a while. I think you can answer your own question and reassure yourself on that one. I think there is a brain fog with a lot of this crap that no medical professional can definitively speak about or help us to understand. It is not like it is a conspiracy but it takes so long to establish a trend line medically and then establishing something definitively is even longer than that. For this very reason I am glad we have each other! Makes us feel less nuts!

    Omaz: the foot thing sounds quite uncomfortable. I will tell you what I get in my feet since this all started: cramps. Actual cramps in my feet. Very odd.  Might you try a foot bath but put rocks in the bottom of it (serious) and roll your feet on the rocks while the jets do their water-rustling business!  It helped a friend who was having serious foot problems due to diabetes.

    For those of you in the Tri-State area, and for those that want to travel to Boston next summer, I am attempting to organize a tri-state group to go to the Boston Komen-for-the-Cure 3 Day Walk. I would love it if we could all do it. I will keep you all posted. I might do it through Twitter/FB or I might do it through this site or a combination of all 3. I will keep you posted.

    I am nothing short of addicted to Twitter and, more to this point, I follow a lot of bc organizations. One of them provided this link http://t.co/mpyK6CIg"
    --

    about how soy is good to help avoid ovarian cancer yet, and we all now, a lot of bc (I don't know the numbers) are estrogen-fed and soy and estrogen go together like Laverne & Shirley! Seriously, though, there is so much convolusion. I wonder how much estrogen is the culprit in more of these cancers and in ways they don't even know about yet.

    In any case, thought you all might want to take a look.

    Good day, all!
    PS-to our "viewers"-if interested in doing the Boston walk
    , you can PM if interested. I am going to start a running list this month and hopefully have it all organized by January so we can get even more fired up and in training mode!

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    PS-and so as not to scare anyone, we don't actually *walk* for 3 days!!!!!!  It is a 3 day event, however!  It is really a big bc love fest riddled with good, wholesome, walking exercise! 

    Furthermore, here is the link: http://www.the3day.org/site/TR/2012/General?fr_id=1751&pg=entry 

    Also, for tri-staters, there is one in Philly but it is in October and I just think it would be nice to do Boston in the summer when we can at least enjoy the weather and for those with families, it will be a nice camping trip! 

  • texasrose361
    texasrose361 Member Posts: 895

    Gotta catch up again LOL

    Thank you so much Lizzy for updating, i didnt want everyone worried for too long-

    Yes my daughter is doing great! She was just cleared by the pediatrician today to go back to school- They have 2 weeks left before christmas vacation! (BTW i never got they whole "vaca" short for vacation because vaca is cow in spanish LOL vaycay looks better LOL)

    ANyhow, let me read everything and get back to y'all!!!!

    Ginger- The meningitis shot is now required for college students prob is no one has any anywhere within an hours driving distance to me... But i have to get it before next sem. (jan 17th)

    Debbi- I didnt know that your son had it also- yes very scary! They were worried about me too! ANd honestly i think me and my son did get it too but because it was viral we got over it. The same 2 days my daughter had a headache i did too and nothing i took made it go away- hard to tell about the neck pain because i have that often with my messed up discs, so my husband said if i still had a headache the next day for me to go it but lucky it went away. I also felt like i was on the verge of coming down with the flu. The day after my daughter was admitted my son said his neck hurt and he slept a large part of the day.... Who knows, i didnt want him to have to get the spinal tap if it was just viral and from the get go the drs felt it was viral and they only admitted her to error on the side of caution, so who the heck knows! LOL

  • texasrose361
    texasrose361 Member Posts: 895

    ALL- THANK YOU SO MUCH FOR YOUR WARM WISHES AND PRAYERS!

    Rachel- yup dont sweat the small stuff- hiring and firing is def small stuff! Hope your next couple of weeks goes much better!

    Omaz- How does your doctor see if you're menopausal? I also havent had a period in forever and my gyno did some sort of blood work and said that my ovaries were working fine but he doesnt know why i wouldnt have a period- maybe its the lining to my uterus cuz thats what bleeding is from right????

    Kel- I am so with you on that! Its like we're circus monkeys jumping through hoops with these people and of course they think they are right and we are wrong... I feel my blood boiling for your situation!!!! I pray that it all gets worked out and if you pay the higher premiums they proptly give y'all back what they owe!

    Speaking of owing- remember that i took my old landlord to court i think the court date ended up being in feb of this year- well anyhow they still havent paid me and they owe me over 2k! thats much needed money for us anyhow there is nothing that says they have to pay by a certain time, which sucks because if i was a bad tenant and owed them i would have a deadline to pay! JERKS!

    Ginger- Yeah tone of voice has a little to do with how they talk to you, i can be sweet as honey to some of these jerks on the phone, but once they get condescending i bite like a viper... My husband often has to remind me to "be calm when you are talking with these people" hahaha he knows me too well

    Omaz- Personally i dont have any left over numbness from the nuropathy, but my onco said its one of those things that may never go away (or fully recover) 15 pounds that it!!!  I am double that LOL- remember tamox makes our bodies store fat because it isnt getting the estrogen that it needs and somehow it gets a hairbrained idea that we need fat.... When you find a solution let me KNOW! ;)

    Ahahaha@ Lizzy- that reminds me for my nutrition class we had to come up with either a new food or dietary supplement. I made "Slim'n'sexy" a new diet supplement that will guarantee a loss of 10 pounds in 5 weeks *not evaluated by the FDA* (of course!) ANd the only ingredient ipecac! My teacher got a kick out of it and had a big laugh.

  • omaz
    omaz Member Posts: 4,218

    Tex - they measure estradiol and if it is below some cutoff it is menopausal.  This spring it was 5 and this week it was 11 both of which she said were menopausal.  But they still want me to go a few more months.  About the weight I am earnestly tracking my calories on fitday software and keeping it under 1700 which is pretty low for me.  I am hoping for 1 pound loss per week.  My fingers are crossed!!!!  I love to eat and can eat a lot.  It's a real effort to turn down food.

    Lizzy - You gave me an idea to put my feet in front of the jets in the hot tub tomorrow after I finish my laps. 

  • LadyinBama
    LadyinBama Member Posts: 993

    Trying to catch up, haven't' checked in for about a week.

    Texas: So glad your daughter is ok. My heart did a little flip when I read she had meningitis.

    Doctors: I went to my breast surgeon, medical oncologist, physical therapist and gynecological oncologist all in the last two weeks. I see my plastic surgeon on Monday. Oh, and the dentist; I broke a tooth. So I was looking at my calendar and I was supposed to see my GP next week for a check up, and I called them and cancelled. I told them I am being followed by sooooo many doctors, that I am sick of going to doctors and somebody had to be cut, and they were it! They laughed and said they understood.

    Good news is I had good checkups with all. The gyn/onc doesn't need to see me for 6 whole months, hooray! And the physical therapist said I can stop coming to her and just let her know if my arm/hand swells again. I'll see the med onc again in 2 months. Whew, maybe there is light at the end of the tunnelSmile

  • omaz
    omaz Member Posts: 4,218
    Yayyyyy Lady!  That's good news!!
  • texasrose361
    texasrose361 Member Posts: 895

    Interesting... I dont think they tested my estradoil- i'd have to look at my paper work...

    Lady- glad to hear you're getting great news from the doctors! Doin a happy dance for you...

    Well i am about to put on some hulu for the kiddos and take a long soak- once the water gets cold i know its time to get out LOL

    Wish it'd feel more like winter down here- i was sweating all night and had to turn on the fan, not hot flash but straight up too warm here!

    Hope everyone enjoys their WEEKEND!

  • ckptry
    ckptry Member Posts: 333

    lady glad to here all is going well at the dr appts. Hope things wne tok at Thanksgiving.

    all -just swamped lately so not able to get on as much - hope everyoen is well. Off to see the Muppet movie -hope I can stay awake:-)

  • texasrose361
    texasrose361 Member Posts: 895

    How was the movie? I am thinking if taking the kids but not too sure yet :)

  • ckptry
    ckptry Member Posts: 333

    texas I got a break -dh took them. they loved it! I asked dh how it was and couldn't get many details -have a feeling he was sleeping but won't admit it;-)

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Good day, warriors!

    I feel so bad because I have not whined to you guys about my hair in a while, and I am sure you all have been anxious to know more, so *here* goes!   I have gone from Christopher Walken to John Travolta in Saturday Night Fever!   Also, because it is wavy it is a bit "mullet-ish!"  This is awful!  I look in the mirror and laugh!  I am letting it grow out and the one cut I have had since chemo is providing for at least orderly re-growth in the loosest sense.   I mean, it really fur anarchy but at least I have some!

    Omaz: you really need some rocks, however.  Just get one of those jetted foot baths and find smooth, rounded rocks, like spa rocks, to put in the base of the foot bath.  Some foot baths have built-in roller-type of things to massage your feet which you manually roll your feet against.   I think a foot bath or, in this case, acupuncture might be a good idea?  I really think it is just about reorienting or disorienting and reorienting your nerves.    

    This morning I got up at 8 and flew out of bed to get my leather medical binder.  Something is on my mind about recent blood work.  I took it all apart and am still looking but something is bothering me.  In any case, at the end of my intake from my onc it says "she is young and premenopausal and if she remains premenopausal after chemotherapy, I would consider the addition of ovarian suppression as well."  Is this where an AI would come in?  Is this why you might switch to an AI as it suppresses the ovaries?  Just wondering.   I never see my onc at appts since chemo so I turn to you all with questions!

    I received a juicer for Xmas (early gift) and am so happy to have it!  I love it.  It really makes life easy.  You get tons of nutrients quick.  

    Tex: I try to be nice but when I *try* it almost always comes across as condescension.   There is nothing more frustrating than being told "this is the way it is" when you know that the entire big ball of shit is just that.  They are shanghaiing Kel, and everyone else in this country, with medical costs and aggravation.  More to this point, it is very hard to be sweet when you already know you are right, they are wrong, you are being wrongly accused, told to pay for it and your chain is totally getting yanked.   

    As for the landlord that owes you, can't you take them to small claims and ask for a deadline?  There has to be a statute of limitations and don't forget, *they* know what that is.  Take them to small claims.  You can take anyone, for any reason to small claims.  DO IT.  Embarrass them, get a judgment, get a definitive repayment schedule.  That is HOW it ends up on their credit.  You need a judgment.  Go get one....everyone else does.  That is how you can demand your funds and get a timeline.  When someone owes you, you have control...exercise it!  

    When the water gets cold, I open the drain, let some out and add some more hot water! 

    Lady: that is great news!  I am very happy for you.  I also know how you feel...onc, ps, dermatologist, dentist, MRI... I can't stand going to doctors anymore.  I, too, broke a tooth.   $3K for an implant...thanks chemo!

    Ckptry, Calamtykel and Sptmm: you all can run but you can't hide!!!!!!   You are in my tri-state for the Komen walk next July in Boston and if you all are thinking ‘what is Lizzy going on about, this is December!' I politely remind you that 6 mos goes fast and we have to get our tents ready!   It is also kid-friendly.   I hope you all are considering it.

    Good day, girlies!

  • texasrose361
    texasrose361 Member Posts: 895

    AHAHAHAHA Lizzy! Okay so my husband tells me my hair is very "Three's Company" meaning the brunette one LOL It is mulletish too I am thinking of getting a haircut, but not sure if i will like the results because of the waves- so funny before chemo when i had STRAIGHT hair i always thought, i'd love to have curly hair- yeah right i change my mind and i want my straight hair back!!!

    I will try to take a pic and post

    I did take those people to small claims thats where i was awarded that judgement, what i was told is there is no limitations- i even went to a lawyer that sent them a demand for payment letter, of course they didnt pay. we have other options which ALL will cost me money to pursue and NONE will guarantee payment. Like one option is a writ of exicution which cost almost $300 and a constable goes over to their home and asks them for the money. If they don't pay there is nothing that happens to them and I am out my money- the justice system really sucks! How does it show up on their credit? Do i have to call the credit reporting agencies and let them know???? I am fixin to walk up to her house and knock on her door everyday til she pays me. Its not harrassment when i am just trying to enforce a payment...

    Is this the 60 mile walk? Because i was told No kids (thats komens 3 day in phoenix)

  • texasrose361
    texasrose361 Member Posts: 895

    Fell asleep lol sounds like something my husband would do!

  • omaz
    omaz Member Posts: 4,218
    Lizzy - If you are premeno you have to take a separate med (I think one is called zoladex) to suppress the ovaries and then you can take the AI.  The AI itself doesn't suppress the ovaries.
  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Tex: I saw a lot of kids so I thought it was kid friendly.   I don't know where all those kids came from!   I will have to double check, thanks.   Where do you live? Cuba?!  I thought you were in this country?  WTF on the legal system there?  Don't pay for the document, get it online.  How could they not be required to pay you what is owed?  I am very confused.   A "judgment," be it through the whatever court, gets on credit bureau reports because the credit agencies have, i guess, the equivalent of auditors that check for judgements in every court across the land monthly I believe. 

    Omaz: thanks for the info.

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796
    Tex: I actually meant to tell you that, yes, we both could be on some 70s shows right about now with this freakin' hair!  I will post some pics soon...it is very entertaining!
  • texasrose361
    texasrose361 Member Posts: 895

    I know, its disheartening to know that these people are free to scam others into renting their crap ass apartments and even if they sued them as well they are never really accountable.

    Oh what burns me is the fact that she (the owner) has i do believe 63 properties, if each one is rented out and she is making oh lets be reasonable and say $500 a unit then she would have MORE than enough to cover my measly 2500 or so... But nope greed keeps her from doing so. I really have thought of calling her daily, but am sorta afraid she would retalliate and cause my husband to lose his job. Unforutently she is almost 3 hours away and knocking on her door just isnt feasable.

  • sptmm62
    sptmm62 Member Posts: 527

    Hi everyone!

    Caroline:  I want to go see the Muppet movie, I love the muppets!! Unfortunately my son doesn't want to see it.  But my oldest daughter (29) and I are thinking about braving the stares and going anyway, if we can't find any little kids to take.  We are still looking.  And, I just saw today that a new Chipmunk movie is coming out... I am definitely going to see that one, but I think my son will go to that one. 

    Lady:  Yes, there is a light at the end of the tunnel, and it is a wonderful feeling when you finally begin to see it!  Glad to hear that all your appointments went well. 

    Lizzy:  Sorry, I meant to get back to you earlier...I would absolutely love to come up to Boston and be part of your team!  I walk about 3 miles every time I go to the gym so I think I can work up to the mileage needed to do the walk and it would certainly be a worthwhile trip.  So, count me in. 

    BTW, you really do need to move!  I was up in CT today for Kieran's soccer game and caught a glance at your gas prices...$3.73 a gallon!!  I thought our gas prices here in NY were bad (currently $3.53 a gallon)...yours are insane!  You are definitely being ripped off there in CT.  Now I know why you talk about moving. Over Thanksgiving while I was away, I paid $3.12 a gallon down south. 

    Tex:  I am with you....I want my straight hair back.  Mine is getting better, but I still have to blow dry it every time I shower to keep it from curling like crazy!

    Rachel:  I got my own Matt Moulson New York Islander's T-shirt today.  Kieran and I are going to a game and so my oldest son picked it up for me...so I can be "official".  I am sooo excited..I am an official Matt Moulson groupie..LOL. 

    Have a great week everyone!

    Debbi

  • rachel5738
    rachel5738 Member Posts: 658

    Hi everyone...Was so glad for the weekend--unfortunately, seemed to go too fast.

    My hair is definitely not any great style right now but I don't want to cut it again as I would like it to get to some sort of one length style. It has gone a little curly -- which I'm not used to and also has zero style. Forgot how hard it is to have short hair. I will try and post a picture of me with my crazy 'do.

    Debbi---That is great that you are a Matt Moulson groupie..I will let his Dad know as his Dad is Assistant coaching my son's team. He doesn't seem to get home much but supposedly through Christmas will be getting home and they said that he will visit the team -- I'll try to get something autographed for you :) My son played a game today and took a head shot to the head so we are on concussion watch today and tonight...he is doing well...he was down for a couple of minutes and had to sit out the remainder of the game. Luckily, they are pretty serious on head shots--other kid was in penalty box for extended time...still, this is the part that I hate about hockey. We are heading to Detroit for a hockey tournament next weekend---Kids get to go to the game on the Sat night and one of the kids gets to stand on the ice during national anthems--they each get a ballot and get extra ballots for great games...my son got an extra ballot today for being the "true warrior" of the game...he is hopeful to win and get on the ice next Sat night with the NHL players!

    Tried to go xmas shopping today--malls are PACKED....I bought one thing and then headed home. Will have to start online instead---don't think that I have the patience for the malls right now! 

  • rachel5738
    rachel5738 Member Posts: 658

    Here is a pic from recent night out---doesn't really show my hair well and I'm sort of blending into the background...but you might get a view of my crazy 'do

    Here is a pic of my son in action in hockey...fingers crossed that he will be back on the ice soon!

  • Lizzy - why dont you see your oncologlist?  I have to go every three months for an exam.  I'm going today.  :(  She feels all the organs - under my arms, lymph nodes etc, I thought this was standard....  Anyhow - yes, ovarian suppression would most likely come once you finish five years of tamoxifen - thats probably what it means.  You get a series of weekly shots to shut it down.  There are a lot of nasty side effects --I read about it becuase my onc. said it was a possibility for me. 

     Dreading today - I hate going back to the cancer center.  THe machine made coffee smell makes me sick just walking in there - that sickeningly sweet smell --yuck.

  • ckptry
    ckptry Member Posts: 333

    Lizzy,  I see my onc too - weekly during Taxol b/c of the neuropathy, then every 6 weeks during herceptin, and this is my first 3 mo follow up coming up. Make sure they're not charging you at the same level if you're not actually seeing the onc (but I'd want to see my onc). I'm actually seeing the first onc I saw at the main hospital in NY  in Jan b/c my onc blows off some of the cogntive stuff . My onc  either wasn't aware or didn't tell me they have a neruopscyh doing a study in cognitive changes after bc at the main campus. They're seeing changes even without chemo, just from bc alone. I don't care if it annoys her. I figure it's my health, I'm paying them a pretty penny, and I hate when the staff act like bodyguards. I called yesterday and said (politlely)please have the dr call me directly . I've spoken to the nurse in the past, but as I can't seem to follow my train of thought didn't want to go through everything w/ back and forth calls (lots going on here - can you tell I'm cranky;-)

    Debbi - I remember years ago going to see the Little Mermaid when it first came out w/ my boyfriend. I especially love the pixar movies -Monsters inc.,Cars..I'm taking 8 kids to Alvin and the Chipmunks for Aidan's birthday - you're welcome to tag along!

       Lastly, my little guy has been having lots of anxiety since we stopped his sleep meds; they think it probably had some antianxiety properties for him. Colum stopped it cold turkey at the Little Pink Houses retreat -without telling me until I noticed the change in behavior so he was in a little trouble. But we didn't want him on it a long time either. Anyway he's sleeping okay after lots of cuddles and reassurances but is afraid to go anywhere in the house by himself or be alone - I shower while he's at school. Even if we've all been in a room if I walk out he comes running after me. He's been asking Cailtin to  get things for him. He said yesterday I know you tell me I'm safe mommy but it doesn't help, I still feel scared.   The other night he said mommy I'm hot and I said take off the covers. He said what if the werewolves eat my while I sleep:-(I'm taking him to his psychiatrist in the city tomorrow so good thoughts or prayers for him are welcome. I never thought I'd have one of those for my 6 yo.

    Carolyn

  • All - -Well it's been an interesting morning.  Friend called at the last minute - she decided she wanted to come w/ me to the cancer center.  So she picked me up and we went.

     Nurse comes in and says "Did the doctor discuss with you the hem bloodwork we did?"  Me:  "No...that was done last FEBRUARY!"  

    'OH".  

    "Oh??"

    So she leaves.  Doctor comes right in.  I tell her what the nurse says-she looks at her laptop and says "OH, didn't we discuss this?  I need to talk to you about your bloodwork..."  Here's the kickher:  HER CELL RINGS AND SHE TAKES THE CALL AND LEAVES!    Leaving me there to pretty much have a total freakout.  

    She comes back in about five minutes later - by now I'm hanging from the lightning fixture...  

    As it turns out, apparently the bloodwork I had last year shows that I have rare blood clotting disorder that puts me at risk for blood clots.  It's hereditary, so it's something my family also needs to be aware of.    This bloodwork was only done because of my experience after 3 weeks on the tamoxifen where I had dizziness and one sided numbness and went to the ER.

    Nice.  So here I was getting all kinds of grief from her about stopping the tamoxifen, and as it turns out, it could have freaking killed me had I stayed on it. SUPER! 

    So that being said, this apparently is not a terrible danger to my health but it's something that is very important for me to make any doctor that I have aware of because of future medications, surgeries, etc.  And it's something that my children may also need to be tested for.  there is no treatment - just to be aware of it.

     SO that was an interesting experience.

    Anyway while we're there, we get a text that a friend just drove herself from the doctor's office to the ER with chest pains.  So we head over there since it's on the way back and I get her car to drive home - since now there's this extra car there at the hospital.  So I drove home today in a Lexus SUV (ooooooo!  :D)     Anyhow, so apparently she's going to be fine but they are keeping her overnight for observation and her fiance will drive her home tomorrow.  

    Anyhow, so that was my morning.  I can't help but be totally ticked that nobody went through this with me.  No WONDER my oncologlist didnt' fight me on the tamoxifen the next time when I went in!!  Because she knew I coudln't be on it !

  • ANd I really have to wonder - when I google Factor V Mutation, which is what this is, with Tamoxifen - why women are NOT being pre-tested for this disorder before beginning the drug!  It says that the compounded risk of tamox with Factor V is enough to have doctors and patients persue other therapies and NOT tamoxifen.  Hm.  That's pretty darned scary!

    I told her in the ER they could not rule out a stroke - and did I have one, based on this?  She said (and this made no sense at ALL)  "Probably not, but it could have been a precursor to issues with the tamoxifen and clotting"  WTH?  So was it a blood clot or not?  what is a "precursor"?  

     In any event, I am glad to at least know all of this NOW!