Illinois ladies facing bc

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  • illinoislady
    illinoislady Posts: 46,506
    edited May 2010
    The important thing is not to stop questioning. Curiosity has its own reason for existing. One cannot help but be in awe when he contemplates the mysteries of eternity, of life, of the marvelous structure of reality... Never lose a holy curiosity.

    Albert Einstein, 1879-1955
  • buddy1
    buddy1 Posts: 529
    edited May 2010

    Oh my  lots going on.

    Elf  I cant imagine how much pain your in.  I am so sorry.

    Donna I have the crazy curls too.  Before cancer I had it but my hair was long.  I too paste it down with gel.  If you find out what to do with it please let me know.

    Marilyn so happy for your exchange  ,

    Navy mom  I have heard so many great thingsa about the st joes therapist.

    I am almost ready to give up my fight.  I got aproved for chicago for a consultation.  They provide transportation to others with different insurance, but not me.  Cancer ctr says it works on volunteers and no one wants to drive to the city.  Silver cross managed care keeps telling me thats the only one in my network.  They dont care that i cant drive myself.  I just dont have the strength to continue.  I did set up a consultation for may26 my husband was going to take me.,  But why bother really if I cant continue witht eh therapy.  I think I am waving the flag on this one and surrendering.  I appreciate all of you ideas and help. 

    One the bright side.  I do have a dermatologist appointment today....I am so very excited.  I will keep you posted on my treatment.  I cant use creams.  I am prone to exccema and with the LE it will just keep repeating so I need help.  Celulitis infections are the pits.  Love ya all

  • illinoislady
    illinoislady Posts: 46,506
    edited May 2010

    Good morning everyone, and hi Marilyn.  What great encouragement to everyone and so solidly true.  I do recall a few times when I was applying some force to take the next step and trying not to think about it -- knowing that anything resembling pleasant wasn't going to be anywhere near for awhile.  Got down to getting thru the next five or ten minutes.  But however you do it, you do get to the other end. 

    How exciting Navy, and probably as hard for you to wait as it is for Mom.  Hope everything goes well even if an induction ends up being done. 

    Thank goodness we are warming up today but does mean that we will get storms tonight.  Lately it seems the majority of our rain has come after dark.  Don't mind as I get to feed the feral cats w/o having to wait for a weather break.  Have had the I heater on the past couple of days keeping things tolerable inside.  Did not need the furnace. 

    Elf, sorry to hear about the tooth.  Dentistry is very expensive and I'm not sure, but I think most insurances don't cover well for it.  I've lost a lot of lower teeth and am hoping for ( years away yet probably ) really safe and good afordable dental implants.  I hope you find a good way to resolve things. 

    Rita, hope your weather is behaving.  From the look of things a good portion of the state is going to get April showers. 

    I'll be checking in again later.  Hope you will all have a good day -- no matter what the weather.  How are things with you Renee'. 

    Hugs, Jackie

  • zap
    zap Posts: 1,850
    edited May 2010

    Buddy, why not go to the consult and just listen to what they have to suggest.  They may be able to  give you guidance once you are in the office.  I am not sure what is involved.  Am I naive to think that there might be a video showing you the manual manipulation Laura spoke of.  Forgive me if that is naive on my part.  I am wondering about home health care.  You also have me for one trip and Navy for another. I just need advance notice as I have a few days in May I am working and my brother comes with his two children one week in June. I say show up and listen to what they say and then ask questions.   
     
    I hear your feelings of defeat and that it would almost be a relief to give up.  Yet, there may a solution and can you just exist with this arm flaring?
     
    Elf, so sorry about the tooth.  I  think the economy has taken its toil on every profession, including dentists.  There was a time  when a dentist's whole goal was to save a tooth, and not pull it.  This whole Doctors across Borders may have to be  reconsidered.  Obviously we have people in Illinois who need medical attention.
     
    Navy, keep us posted on that baby.  Ask you DIL to go to the mall if it is raining and walk for five hours.  That finally did it for my daughter.  She refused to go home until she felt the beginning of a labor pain.  She was nearly two weeks over, though.
     
    Take care!
    Susan 
  • [Deleted User]
    [Deleted User] Posts: 4,011
    edited May 2010
    BUDDY! - I will NOT let you "give up"...I just left you a message. Call me when you get home. We can and we WILL get you the help you need and deserve. Illinois Girls do not give up...we get results and we move on... Giving up IS NOT AN OPTION! Hugs to you Budder!
  • makmak
    makmak Posts: 374
    edited May 2010

    HELP!!! I went to the Block Intergrative center and they ran a Vitamin D test on me. Now I'm being told that my Vit D dropped in HALF in a month.. while I've been taking a supplement of 50,000 IUI per week!! It makes no sense, and I'm very upset.. My Dr is on vacation for another week. I left a message with the nurse.. My co-worker who is going through this had her levels go up more than double on this dose!!  I know some of you take Vit D supplements.. any ideas?  I don't want to double my dose.. the only thought I have is to get re-tested at my hospital tomorrow and hope it was a mistake??!!!  Any ideas/suggestions would be great!!

    Thanks!!

  • binney4
    binney4 Posts: 1,465
    edited May 2010

    Buddy, if you're willing to accept volunteer rides provided by the cancer center, then why not voluteers from among your friends here??? In fact, rides from friends are even BETTER, because they already know you and care about you. If the tables were turned, Budder, and you could drive one of these Sistas across town to get needed help, you'd do it in a heartbeat, and be happy about it, too. Make your Sistas happy and let them give you the escort you need.

    Besides, we're all at risk for lymphedema, so whoever drives you gets to learn things that may even spare her this stupid side-effect.Smile Win-win!

    In the end (as Laura so aptly says in bold-face type above!) giving up is not an optionl. Moving that fluid out of your arm -- and learning how to KEEP it out -- is your best protection against cellulitis. In fact, it's your ONLY protection. You give up now, and you're a sitting duck just waiting for the next attack -- no good at all.

    Zap, excellent suggestion about going to the first appointment and working with the therapist to find ways around these obstacles.  We can talk about ideas for limiting the number of visits you'll need, Buddy, but you need the evaluation first. Go for it!

    (But, hey -- I sure do hear your frustration and despair. It really is over the top to have to deal with this stuff, and I'm so sorry about that. But you can do this, Buddy. It'll be good!)

    Great big, very gentle hugs,
    Binney

  • Rene23
    Rene23 Posts: 290
    edited May 2010

    Buddy - I don't know where you live, but with enough notice and if you can get a Friday appointment (my day off), I'd be happy to drive you downtown. 

    Elfsong - I'm a little shocked that your dentist's office chose to pull your teeth out as opposed to letting you set up a payment plan.  I hope you consider finding a different, and more compassionate, dentist.  

    Marina - I'd absolutely get that test redone.  Goofy results do happen on occasion, and it's not uncommon to re-test and confirm. 

    Wendy - Glad to see you posting again.  I hope you're eyes are recovering nicely.  

    This Thursday at Pompeii, right?  I'm planning on it!

  • illinoislady
    illinoislady Posts: 46,506
    edited May 2010

    Hi all....long day and late night for me....just now on the computer and it's almost 9 p.m. so I will just say ( hear the echo ).....don't give up Buddy.  Our hands and arms are meant for so much -- we make life with them.  Do what has to be done  -- don't give up -- now or ever.

    Hugs, Jackie

  • blackjack
    blackjack Posts: 771
    edited May 2010

    Hi Girls..Just wanted to stop by for a quick hello to all of you. I do apologize for not wishing each and everyone a Happy Mother's Day. I do hope you all had a wonderful day with friends and family. I spent my day in bed with the dreaded flu again. Slept the entire day away. I am slowly coming back to life but still feel like crap. Oh I am so looking forward to warm weather, sun and boating. No more vomiting kids at school. 17 days left and counting!!

    I hope that there will be a large group on Thurs.night for the Lunch Bunch. Good food, good friends and lots of laughter...so come and join us.

    Well off to bed, but wanted to say hi to all.

    Have a good night,

    Remember to be healthy...be happy

    BJ

  • illinoislady
    illinoislady Posts: 46,506
    edited May 2010
    May you listen to your longing to be free.
    May the frames of your belonging be large enough for the dreams of your soul.
    May you arise each day with a voice of blessing whispering in your heart
    ...something good is going to happen to you.
    May you find harmony between your soul and your life.
    May the mansion of your soul never become a haunted place.
    May you know the eternal longing that lies at the heart of time.
    May there be kindness in your gaze when you look within.
    May you never place walls between the light and yourself.
    May you be set free from the prisons of guilt, fear, disappointment and despair.
    May you allow the wild beauty of the invisible world to gather you,
    mind you, and embrace you in belonging.   
    -  John O'Donahoe
  • illinoislady
    illinoislady Posts: 46,506
    edited May 2010

    Bj, I feel so bad that you missed your Mom's Day with the flu.  I think you have had a rough first year at school working all year.  Sure hope you feel better soon.  Glad school is almost done for the year so you can really relax and get on the water that means so much.

    Speaking of water....we got plenty during the night and I am hearing thunder as I write.  I don't feel real positive about the day --- it may keep bringing water.  Hello, April showers. 

    Not such a great day yesterday -- spent the day in Marion ( VA ) with Denny.  He had some pressure on his chest the past couple or three days and was not resolving.  He will go see a Cardiologist Thursday.  I am hoping that the bp meds and backing off stimulants -- like coffee and sweets will help greatly while he gets this sorted out.  We shall see.

    Buddy, I'm nagging.  Do the right thing.  Binneyis quite right you know.  If ACS could provide you a ride -- what is the problem letting friends who care about you do so.  Ok, even I have some trouble with this -- I admit it, and know you sometimes feel as if you are a beggar and whiner -- but I do realize ( especially since being with the ladies here and on this thread ) that many times the things that are done for someone else do just as much for the spirit of the person doing them.  It is a beautiful karmic expression of care and so delights the soul of the person preforming the act. 

    Ok, for you Buddy,I am going to get real honest here -- I have generally always been pretty self sufficient -- always wanting to pay my way -ya-d - ya-da - ya-da. It takes all the money I earn for the most part  to do what I do and keep going.  I'm not moaning about this -- well maybe a small one or two -- but just saying that when I came here all I've ever received is the help and love of these women.  From t-shirts to lap robes, Christmas ornaments, books for reading including my very own Quote book, to left over radiation cream when mine was not doing the trick --- it has all come to me and at first -- it was hard to accept -- until it came to me that these women had just put a piece of their hearts in my hands. I could not deny the growth of their soul and spirit by not being humbly blessed that they chose to ease my burden.   Someone eases their burden, and even when we don't know it.....I'm sure we ease someone's too.....another way of saying what goes around, comes around.  People talk about bad Karma -- well there is good Karma too.  Lets don't just stand in the way of that -- ok.  You go to your consultation....see what sort of program you can work out....and then go for it.  Each one of these ladies are an angel -- they are going to angel someone just like they angel -ed me....so please just relax and let the healing begin.  Ok, not going to say anymore. 

    Onward with my day....I'll go have breakfast with Maggie this a.m. but going to have to rethink this McDonalds breakfast too many mornings....not a real good thing.  See you all later as I'll be checking in thru the day when I can.

    Hugs, Jackie

  • zap
    zap Posts: 1,850
    edited May 2010

    That was rude.  I just posted a whole lot and it all vanished!
     
    Anyway, I was so glad to hear from BJ.  You need sunshine, warmth, no humidity and no sick kids.  It is all coming.
     
    I really feel badly that I am not able to come tomorrow for dinner.  I  am feeling a need to BE with people in person and not in this cyberspace.  WE have so much going on in the group  that I really want a two-way conversation (okay a  ten-way conversation) with you.  I will absolutely make a point to attend the next one, and I hope nothing interferes with that plan.
     
    I have stuff going on here too. Our friend Bill is in the hospital after surgery for his liver mets.  My best friend seems frail right now and so I would like to be around.  I also am working on Friday and it is hard for me to do dinner and then work......I know I am a wimp.  I have been so tired lately and I am blaming the weather.
     
    Marina, I am not sure about the vitamin D levels.  Could it be a mistake?  I bet Laura can figure it out.
     
    Wendy, go to the library and rent the movie A Portrait of Jennie.....it is old and really cool.  I know you like the old movies/stories as I do.  
     
    Have a good day!
    Susan 
  • zap
    zap Posts: 1,850
    edited May 2010

    Jackie, we were posting at the same time.  I printed a copy of your quote and am taping it to my mirror. It is perfect for me!  Thank you!

  • buddy1
    buddy1 Posts: 529
    edited May 2010

    Oh poop....I just lost my post.

    Gal pals I want to tell you all how much I appreciate your kindness .  I feel so overwhelmed to be treated so kindly.  Im just not use to it.  Thank you so much  I will ride it out a bit longer and see what comes of it.

    I saw the dermatologist yesterday she scared me.  Said it was the worst case she had seen ,took pics, she gave me a steroid shot and cream. said to wrap[ it in seran wrap at night .  Geesh I felt like leftovers all night.  Everytime I rolled over I krinkled.  But it did seem to help a tiny bit.

    Laura I got home late and didnt want to disrupt your evening with a return call.

    Love ya'll so much

  • makmak
    makmak Posts: 374
    edited May 2010

    So.. here is what I've learned.. The prescription I got is D2 and that is the wrong one.. I need D3!! so now I have to figure out what dose to take.. Laura??? 

    Some good news.. got my BRCA tests back and NEGATIVE!!  Good for me AND all my kids!! so something else to be greatful for as my genetics counselor said I had a 40% chance of having it..  So... one day at a time.. and I too will be with you all in the SURVIVOR category... :)

    Marina

  • smerf
    smerf Posts: 476
    edited May 2010

    Hi to you all,

    Have to catch up, but wishing you all a belated Mother's Day. I've been working on long needed projects around the house, but time for a little breather today. Spent much of yesterday in the attic, and I'll say one word......spiders. Now I am fearless!

    Marina, you can get good D3 at Walgreens. Get the gel caps as we absorb that form better than pills. They often have a two for one sale too! So happy to hear about your BRCA test, and yes you will be in the survivor category. If you need stronger dose you probably should talk to your doctor. The 10,000u dose is prescription only, and should be monitored by a doctor. It is possible to get too much vitamin D, unlike most other vitamins, and that causes other problems. High doses should be monitored by a doctor. I take two gel caps per day, which is 2000u, and also another 1000u that come with multivitamin and calcium tablets. One of my docs wants me on that dose, so I did not decide for myself, but my D levels were at the lowest limits of what they think is normal.

    Buddy, I'm so sorry to learn of your arm and hand problems. I agree with Binney and Laura....don't give up. The only solution is to treat the problem or the infection will likely happen again. Glad you got an appointment with a derm. I know there is a shortage of them, and waiting is not too unusual. With eczema you always have more possibility of infection, so hopefully that too will get better. So sorry you are going through so much, but hang in there and thinking of you.

    Hugs to all

  • smerf
    smerf Posts: 476
    edited May 2010

    Elf, I just saw your post. I'm so sorry you are in pain. It troubles me that dentists, unlike doctors, are under no obligation to take care of patients first, and get paid afterwards, at least for emergencies. I have been lucky to find a nice one, who is willing to set up a payment schedule, but I know many won't. Only suggestion I can think of is if you can get to a dental school, like maybe Loyola or UIC. Dental schools have students who do the work, and are supervised by their professors.

    Gentle hugs, and hope you feel better soon.

  • ritajean
    ritajean Posts: 4,042
    edited May 2010

    Hey  B.J....sending healing vibes your way and hoping that you're feeling much better today.

  • [Deleted User]
    [Deleted User] Posts: 4,011
    edited May 2010

    Budder - How about Christ Hospital? My PT told me this morning that they have a great LE program. Here's a link: http://www.advocatehealth.com/cmc/body.cfm?id=364 Would they take your insurance? And...I'm curious...is the Dermatologist treating you for LE? I'm concerned because some topical solutions can be more harmful than good when LE is involved. Don't want to scare you, and I'm sure the Dr is fine, but question everything...for your own sake. Budder here is a link to a video about Manual Lymph Drainage. http://www.nwlymphedemacenter.org/  

    elf - How are you doing today? I'm sorry about your tooth. Hang in there dear.  

    bj - Sick again! OMG...you poor thing. Hang in there...hopefully you'll be cruising on the lake soon! No more kids...HELLO BOATING!  

    Rita - Is there any way you can get a link to the TV video of you and MaryJane? Would love to see it! 

    Navy - Is there a new little one yet? And yes...mall walking did it for my sister with her first one! I made her do it for two hours...worked like a charm! lol   

    Marina - The first thing I was going to ask is what type of D you were taking...and sure enough just as I suspected it's not the right one. You could try Andrew Lessmans vitamins available at the Home Shopping Network. Many of the OTC ones are cra*. One by one I've been switching to his brand. I would think you should do the same regimen your Dr initially suggested, but do it with the D3...you should call him though and see what he says. What is your D level? I took 6000 iu's a day for 3 months and my levels went up to 53 from 32. I now take 4000 a day and will be rechecked in three months. It's incredible that some Drs know so little about D/D2/D3! Geesh...it amazes me as I hear about this type of thing ALL THE TIME.

    ------------------------------------

    Yes...our next get together is tomorrow ) Thursday at Pompeii...6ish.

  • Carolyn422
    Carolyn422 Posts: 140
    edited May 2010

    Hi All,

    I've been trying to get rest since I've been back from surgery but I''ve been keeping up reading the posts.

    Buddy - Don't give up! We're all rooting for you and want to see you get better. Things have a strange way of working out.

    Elf - Hope you're dental situation gets better real soon.

    Marina - So good to hear that you're getting some good news finally.

    Laura -  I'm so bummed that I can't be at the dinner tomorrow night.  I can't wait until I can drive again.

    Wendy - Hope your eye is doing well.

    BJ -  Sorry to hear about the flu. 

    I did get one of my drains out.  However, the other is still draining too much.  The dr told me yesterday to bind myself up in Ace bandages tightly so that there is some compression and hopefully that will cause the draining to go down. 

    I'm still limited in what I can do.  Oh well. It's probably good since I'm still tired.

    Take Care.

    Carolyn

  • makmak
    makmak Posts: 374
    edited May 2010

    My level was 34 originally and dropped to 17!! ouch.. so they just retested me here to see if it's a difference in Lab readings, and i'll get the D3 and start taking tomorrow based on the results..  On a good note, my WBC are up again so no delays in treatment.. platelets took a lovely 100 point nose dive.. oh the worries of all this... Oh well.. another treatment an hr from being done.. :)

    Thanks everyone for your advice and support!!

    Marina 

  • elf_song
    elf_song Posts: 148
    edited May 2010

    Hello~!!  What a cloudy day..

    Thanks for the kind words ladies..  I felt much better after let it out some vent..

    Buddy- please don't give up~!!!  like Susan said, at least go to consultation and see what they have to say and go from there it will be worth it.. please please  Laughing pretty please!!!!

    Navy- my ob induced me with first baby because he was week late..   I do remember that day like yesterday..  I walked everyday with my mom but that didn't do anything for me...  

    Marilyn- I hope your exchange went well..

    Marina- great news for BRCA negative~!!

    I went to see the dentist AGAIN yesterday... He cleaned out the dean tissues from gum and put some meds in so it will heal better and fast..  then I gotta go back next week to get the meds out from my gum and hopefully that will be it..  I used most of my dental benefit $1500 for this one tooth...  After this tooth is done, I am not going back to him.. I am looking for someone else for sure...  Don't get me wrong, this dentist and office staffs are great but they just don't have a payment plan between office and patients that's why I had no choice but pulled the tooth out..that sucks..  Sometimes I wonder why do we have insurance.. It just not enough coverage for what we needs and they don't care...

    My dh will be out of town next week for 4 days and I can't wait to find something to do with the kids...  Some how it will be fun and some how it won't be with my LE arm but I have to menage so we can have some good times... 

    I wish I can make it to tomorrow's get together but wish you ladies will have a wonderful time~!!!

    Have a good evening everyone~!!! 

  • zkacmom
    zkacmom Posts: 146
    edited May 2010

    Had my ct scan and everything looks fine.  He is going to start me on Gezmar/taxol and avastin next week.  I have had my bad and good days. I just want to have good days where I can do some cooking and be able to eat.  I don't eat too much but I just don't feel like it.  Nothing really tastes good.

    Anyways just thought I would let you all know my results...

    Ginny

  • buddy1
    buddy1 Posts: 529
    edited May 2010

    EJ  Its just not fair that you should be suffering.  How is the arm  has it swelled more?  When I saw you it looked like it was starting.  So are you mine and Laura's new swell sista.  It really stinks.  I am so sorry

  • buddy1
    buddy1 Posts: 529
    edited May 2010

    Ginny so glad your CT looked good

  • Mich101
    Mich101 Posts: 489
    edited May 2010

    Ginny-Hoping things continue to get better each day for you. Sending positive thoughts your way!

  • zap
    zap Posts: 1,850
    edited May 2010

    Yea, Ginny!  Good scans. 

  • ritajean
    ritajean Posts: 4,042
    edited May 2010

    Good news on the CT scan, Ginny.  Now you just need to find something that tastes good to you so you can keep up your energy level.  Maybe your cocktail combination will do the trick for you!  I think of you each day.........hang in there.  The CT results sound so positive!  How was your Mother's Day weekend?

    Rita

  • MsMarilyn
    MsMarilyn Posts: 27
    edited May 2010

    My exchange went really well... after I was finally cleared for surgery.  At first my potassium level was too high at 5.4 but they did another blood draw and it was perfect at 4.0 within minutes after the first draw. It push my surgery behind an hour and a half but it's done. WooHoo!

    My incisions are bigger than my mastectomy ones (they go all the way under my arms to my back) only because my PS removed that roll of breast tissue that went there.  Not sure why it wasn't removed back in Nov. but I'm glad it's gone now.  Guess I'm made funny but he told me that my breasts started under my arms.. LOL

    I'm not in as much pain as I thought I would be, which is great news but I do have to be careful when I move my arms too much but that's no big deal.

     I hope everyone is doing well.

    Marilyn

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