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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited April 2010

    Thank you. Thank you. Thank you. 

    Quick Report.

    Just home for a few moments from my long-awaited PCP appointment. I am SOOOO happy!!!

    Turns out I'm not outta-my-gourd.

    This from a reliable M.D.

    Long story short. She is going to refer me to a new BC surgeon here in town. She feels like I do indeed need a 'new' specialist to take the helm. She wants me to have a second-opinion & new long-term relationship with new surgeon.

    SHE LISTENED TO ME.

    (I knew she would, but still, like gold that she did.)

    a.) she doesn't think i'm nuts!!

    b.) she doesn't think i'm depressed!!

    c.) she thinks i've done an admiral job of navigating thru these last several months

    d.) she thinks having my "happy pills" to take when things get unreasonable, is a very reasonable way to deal with all of this: Atavan, my prescription of choice

    e.) she thinks the fluid build-up, since my infection resolved, needs evaluation by a new set of eyes; she can see what restriction my body is under & can imagine the pain i must be in & she doesn't think that it's reasonable to ask my body to adapt in the next 12 months (as per the opinion of the original surgeon)

    [And I never even told her the whole chapter of losing Saint in the midst of all of this]

    My evaluation by LE specialist is on Thurs.

    In the meantime we leave for Cleveland momentarily, where tomorrow I will 'perform' for a couple hundred young children at a time, many of whom have special needs.

    --- note to self: do we all have special needs?? is this why i get along with such a crowd?? cuz i have special needs??

    Thank you from the bottom of my heart, for standing by me thru all of this.

    xx00xx00xx00xx

    edit begins here:

    LOLOLOL

    Yes, indeed I have started a new page!!!

    I think that is so funny.

    I mean seriously, funny!!!

    There is funny on the horizon.

    I may yet laugh again.

    New picture, new picture, new picture.

    Back to the basics.

    New life, butterfly, emerging into the sunshine of a new day.

    My Door County Butterfly:

    The photograph I took in Door County, WI a couple years ago.... that started me on thinking I might be capable of taking pictures, for more than just my own amusement.

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  • coonie
    coonie Member Posts: 7,618
    edited April 2010

    Yippppeeeeeeeeeeeeee!!!!!!!!!!!!

    Wonderful wonderful WONDERFUL!!!!!!

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  • mumito
    mumito Member Posts: 4,562
    edited April 2010

    Excellent news faith ((((hugs))))

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  • Jenniferz
    Jenniferz Member Posts: 541
    edited April 2010

    Your news couldn't get any better!! And, the picture is lovely.



    Congratulations on such a report. Sounds like your pcp is a keeper!



    Jennifer

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2010

    good news! Isn't it amazing how much of this comes down to feeling heard?

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  • marlegal
    marlegal Member Posts: 2,264
    edited April 2010

    wow, so good to read that news Faith ... someone who listens, what a concept, huh?  I'm so sorry you need to deal with all this new medical crap, but lots of prayers that you will connect with a surgeon and get this healing underway.  anxious to see how you make out with the LE therapist.  if there's any way I can help after that, to answer any questions or share any experiences from my end, just let me know.  hugs ... then a couple more hugs.

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  • coonie
    coonie Member Posts: 7,618
    edited April 2010

    Marlegal you're so right......someone who listens!!!! WOWZERS!!!

    Faithie---praying for even more answers and help for you today!!

    (((((((((gentle hugs))))))))

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  • shiny
    shiny Member Posts: 892
    edited April 2010

    Faith lovey,

    Sorry that I have been "away" for a wee bit, first the Volcano kept me away, but since back been tooooo streched(mainly special needs advocate stuff, and health) even to come on here and hug my dare I say it"sistas". xx

    Jennifer, beautiful prayer, like my friend Coonie, I too have copied it, it's so true.

    Faith, tomorrow, I shall rejoice over a cup of coffee, listening and looking at your brill DVD and send yousome of my PEEEEEEAAACHIEST vibes. I am so glad you are feeling heard!  I had a very similar scenario with my GP treating me like I am a dingaling (just out of the blue- don't think he took kindly to the Oncs writting to him in bold letters telling him to do his job and reffering me on to 3 types of specialist), then I saw the chest/lung specialist and he straight away "beleived me" and notice the blockage in my bronchial tube, just from his exam, and did a  bronchoscopy 2 days later. Nice to be heard. I nearly wanted to kiss him for taking me seriously! I was so grateful.

    Take care, and don't feel suprised if you get a real peachy lift round 5 a.m or so tomorrow, sorry but with the time change "them vibes will be crossing the pond round bout that time lovey".

    xx Shiny (Sorry for the long blurb) 

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  • marlegal
    marlegal Member Posts: 2,264
    edited May 2010

    coonie and shiny, I hope so much that I get to meet you someday .. your posts so often say what I wish I had thought of!!  faith....let us know how the LE appt went.   hugs my luvs

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  • shiny
    shiny Member Posts: 892
    edited May 2010

    Faith, just a quick "hi there" and xx from me since am passing.

    Marlegal, if you are ever planning to be in London, pm me first, so we can plan to meet up, that would be lovely.

    Still, brill we can all meet up here.

    xx hugs to all.

    Shiny

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  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    It wound be awesome go travel to London to meet Shiny!!!!

    (((((((((Faithie)))))))))))

    e9a6.jpg Cute baby pics image by hawaiinarmychild

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  • flash
    flash Member Posts: 1,685
    edited May 2010

    Faith- how'd the LE appt go??

    Shiny- so good to see you in here.

    Mar-having a good weekend? 

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited May 2010

    Having a VERY difficult time typing.
    If I tell you this, it will be real & I can't bring myself to believe.

    Appointment to LE specialist is the documentation that I DO have edema in my arm. There is still some question as to whether I have LYMPHedema or not? There has already been a LOT of finger pointing going on between the professionals.

    Who did what, when, to start this.

    I was just crushed Thurs..... got home about 7 p.m. from all day set-up, appointments, trip to pharmacy to order compression sleeve & gauntlet.

    Had to get up before 6 to get downtown for BIG state event. No time to acclimatel. No time to adjust, wrap my head around.

    Specialist feels I must wear sleeve/gauntlet EVERY day, all day.

    So I ordered a hot pink set.

    Spent yesterday's 12 hours at convention-site, drove back to pick up garments at pharmacy. They had arrived. They are skin-colored beige. I just sat there and cried and cried and cried.

    The poor woman. I am decked out from head to toe in polka dots and sooooo wanting outlandish  statement, garments, but that is not what has arrived. She could return these and get new ones in a week or so, but I fly home from DC on Tues of this coming week. Feel I can not fly w/o compression -- so take ordinary (insert hideously UGLY) garments home. Cry all the way home.

    Must get up again before 6 to start the day all over....... only today my presentation was THE last segment of the 3 day conference (so people would stay.) My workshop room is as far from exhibit space as humanly possible in our convention center. I am SO exhausted.

    But, the room was over-filled to max. People were genuinely filled with empahty & were supportive. DH stopped thru after he packed up our booth and insisted I sit down and drink some water, we compromised & I drank the water.

    I got all the way to the last song and just started crying and was only able to 'perform' the sign language. There was a very young survivor in the audience, one year out. She was sobbing and most were pretty moved. (my new one entitled: "Family & Friends")

    Well we are now in a UHAUL headed back to DC with furniture for DD2&SIL..... so we can attend her doctoral recital. Feel free to point out -- this is indeed nuts. LOL

    What we do for our children. Please don't lecture me. I don't have to do a thing -- just sit here.

    My hubby is so amazing.

    I've had the compression sleeve & gauntlet on for about 4 hours now. Typing is a new concept.

     Will regroup in near future.

    Just too exhausted to have this new 'unknown.'

    Thanks for being my sounding board.

    xx00xx00xx00xx

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  • hollyann
    hollyann Member Posts: 2,992
    edited May 2010

    ((((PAT)))))....Awwh honey I just found this thread........Bless your sweet soul, you need to slow down and take care of YOU for a change....You do so much for so man, when will you take time for PAT?????.......I too have a bit of swelling and am contemplating seeing a new PT......I have some swelling on my upper arm in the back..........

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  • Jenniferz
    Jenniferz Member Posts: 541
    edited May 2010

    Hollyann's right! Please take care. slow down, and heal! I know you won't believe this, being the superwoman that you are, but..................the world will still revolve IF you take a day to two for FAITH.



    Jennifer

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  • mumito
    mumito Member Posts: 4,562
    edited May 2010

    (((((Faith))))))  flowers always make me feel better and smile.

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  • chrisct
    chrisct Member Posts: 2,662
    edited May 2010

    ((((((((((FAITH))))))))))

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2010

    Hi faith....I have some edema in my cancer arm, but they are hoping it is not LE since my hand is not swollen. There are some cool sleve companies, one is called lymphedivas I think.

    I am pretty scared since I have a pretty serious arm injury on my cancer arm, but I am hanging in there.

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  • marlegal
    marlegal Member Posts: 2,264
    edited May 2010

    faith, we need to talk on phone - seriously .. when is good time for you?

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  • marlegal
    marlegal Member Posts: 2,264
    edited May 2010

    p.s.  faith ... send to my home email addy ... i don't come here often enough, but we need to talk

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited May 2010

    Life goes on.

    Here I am at the end of last week.

    My conference presentation.

    Introducing my new picture book:

    This picture is my signing "neck so STRONG"

    I see my new Ohio-PT on Thurs. Can't wait!!!!!!

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  • hollyann
    hollyann Member Posts: 2,992
    edited May 2010

    LOVE LOVE LOVE the pics!..........Sorry about the sleeve....I already see zebra stripes and polka dots in your future sleeves...

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  • marlegal
    marlegal Member Posts: 2,264
    edited May 2010
    faith, here's the link to the site cookiegal was talking about http://lymphedivas.com/   I can't wear their sleeves because they are too long, but they are a hoot!  I don't see a sleeve in those pics ... do I have to go into my lecture mode???  Suze, I hope you're seeing a real lymphedema specialist and not just anyone else to keep track of your arm - you say you have an injury to it ... that can bring on lymphedema.  I go into hyper mode because there are so many things you can do to prevent LE that we aren't told about, that I asked about and wasn't told about ... and now it's my buddy for life.  I've dealt with that, but want like hell to see that those on the border don't go over.  I'll get off the soapbox, but if anyone wants more info, please send me a PM and I'll share do's and don'ts.   Faith, I love love love the outfit!!!!  Your spirit to go on with the show amazes me every single time.  Hugs dear.
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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited May 2010

    Mar. You're right. My last presentation before my sleeve.

    I promise I've worn it all day, just took it off. I will admit, I did not wear the gauntlet today nor the day w/Kindergartners earlier this week, but otherwise I've worn them in combo for the rest of the week.

    I welcome all tips, do's and do-not's that anyone wants to share. Either PM or here.

    These have been the longest two weeks since my surgery. I am completely plum tuckered out.

    Will not do a thing tomorrow except sit and drink water and complete that cycle.

    Thank you to one & all for your concern.

    I am now COVERED in some sort of tape, I can't remember the name of it..... all across my chest..... woven octopus legs up & down, back & forth. My PT's idea of an art project. She is optomistic. Time will tell.

    I can't get in to see the new surgeon, second opinion person for over a month yet. I may start calling daily to see if there is an opening at the last minute.

    Off to crash hard. "When I sleep, I sleeps deep."

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  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    Me is hoping you're in that deep sleep right nowWink

    Try to relax this weekend!! You SO deserve some "you" time!

    Love You!!!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2010

    Faith, it's Kinesio tape, and it does help in many cases (as long as you're not allergic to adhesive!) Hope it helps! Here's a page about it:
    http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm

    Besides the LympheDivas sleeves there are a couple of companies that make sleeve covers. If you look into them do be sure to check out the fit with your therapist, so they don't constrict lymph flow. Here are a couple of cover sites:

    http://www.warriorwear4u.com/id31.html

    http://mysassysleeve.com/

    You could also look at arm warmers to cover your sleeves, which come in all sorts of patterns, but CHECK THE FIT WITH YOUR THERAPIST before wearing them. Here's some leopard-spot glove "covers" (a bit goth, but, hey!Wink):
    http://www.etsy.com/listing/43362055/leopard-animal-spots-short-gloves-arm

    Here's a thread from the Lymphedema board that's full of hints for decorative arm covers:
    http://community.breastcancer.org/forum/64/topic/750863?page=1#post_1794411
    (Sorry, I can never get bc.org sites to link, but you can copy and paste it).

    Cookie, DO go get an evaluation by a fully-trained lymphedema therapist. Your arm can very well be swollen without involving your hand (and vice-versa), but the longer you wait to start treatment the harder it is to control and the more likely you are to suffer a serious infection.

    More lymphedema information at these two sites:
    http://www.StepUp-SpeakOut.org

    http://www.lymphnet.org

    Faith, I just wanted to add this challenge to you, as a possible future goal for you to consider. Wearing lymphedema garments in public is difficult (would you believe humiliatingTongue out). It marks us as "different" in a way no one would envy. But when you're presenting for children (and their teachers/parents) it might be a brave way to be in solidarity with the kids who have visible disabilities. Could be an encouragement to them and a help to the others in seeing such differences as less of an issue. Just a thought (as a mom of kids with very visible "differences"Wink).

    Hugs!
    Binney

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  • candie1971
    candie1971 Member Posts: 4,820
    edited May 2010

    Faith, just letting you know good vibes headed you way. You are in my prayers and I wish you a good day everyday!

    hugs and prayers

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2010

    thanks for the advice....I did go to the LE specialist at MSK, and that was her call...but I have three more sessions just in case.

    She thinks the arm is swollen because of the injury and the meds. Non cancer side is somewhat swollen as well. Plus I am doing rehab exercises on the cancer/ injury side.

    I did have to have an injection in that shoulder thursday, and that was a little scary. I am hoping to avoid surgery (scarier).


    She put it this way, while it's not great that 6 months out I have had the cellulitis infection and an injury she thinks the fact that I did not develop LE from these indicates my lymphatic structure is good.

    Had a little scare because the physiatrist did think I had it for a moment, but then he looked at the other arm which is swollen too. He believes Celebrex is to blame and says all anti-inflamitories can cause arm swelling, even naproxen. Never knew that!!!

    Turns out my mom had nodes out in the 80's and never was given any advice about avoiding injections...so I told her to stop getting shots in that arm. Not BC, just swollen nodes.

    While I was writing this the census taker showed up and did her thing!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2010

    BTW ...went off all anti inflamitiories for 18 hours and the swelling improved a lot. (Lost 1.5 pounds!)

    Pain forced me back on naproxen, but swelling is less than with celebrex. Too bad, the celebrex worked well for my breast pain.

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  • coonie
    coonie Member Posts: 7,618
    edited May 2010

    Good morning "Faith watchers'---certainly do hope you'r starting your weekend off with a full night's rest to help you heal even quicker and better. Hope your weekend you start to mend in all the right directions. Thinking of you and sending some big ole Louisiana hugs and prayers up your way to surround you 2 or 3 times or until the hug just gets too tight you can even stand it any more.

    We care about you and want you to be and we'll be right beside you while you're in the process of getting everything in perfect working order. We'll cheeeeeering you on to biiiggger and bettter things!!!!!

    ((((((((((((((((((((((((((((((((((((((((((hhuuughhhhh....gentle of course)))))))))))

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