Illinois ladies facing bc

Buddy, that sounds just awful.    You need some answers!   Sorry I don't have any - but yes - you deserve better than that!   I hope your arm improves and you feel better quickly {hugs}

DonnaDio,   I knew someone from here was from Crete.   I was just scanning Fox news online and read of a lady (from there) that fell 4/stories & passed away at a Halloween party.    Way sad!

I went to the movies with a girlfriend today - my first fun outing since pneumonia diagnosis early last week.     Feeling much better now - thanks to Zpack, plenty of fluids and rest! 

Jackie....My heart goes out to you regarding Micki...there is no better love than that of our furkid!!! Sending you many hugs !!!

Enroute to NY and hard to repsond to all.WELCOME to all newcomers and know you will get the support you need and alot of caring!!!

 Zap  I have been on 5k D3 as mylevels are low..up to 43 , ...100 being the right level. I have hadan itch on upper back and shoulders. Thinking this was all hormonal?? I do have some little bumps of sorts and get so darn itchy. Wonder if this is from the D? Thanks for this info!!

Will check in once I am land bound!!!

Have a good day and to ALL those in TX or having tests, appts etc!!!

Donna

Buddy I'm chipping in here too. This is unacceptable. You pay the healthcare folks/facilities a lot of money to take care of you. You wouldn't except this kind of behavior in restaurant from a waitress/waiter. I realize these folks are very busy but this is your health. Sometimes you need to be the squeaky wheel. It might be that someone just forgot to give you instructions or made some other mistake. I can't tell you all the mistakes I've run into already, some I caught and some they caught. You need to call up and find out what you should do. My first call would be the surgeon.

And what's this BS about they didn't do anything in your arm to cause the LE. If you had nodes removed and you are fighting an infection it makes sense that your LE would flare up. This is LE 101. Did they miss class that day?

The last entry here: http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm under prevention states: Discuss with your doctor the use of prophylactic oral antibiotics with any medical procedures that involve the affected parts of your body

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Carolyn good luck with your 1st day back. I'm so excited for you. Just one more thing that brings life back to "normal".

Jackie, sorry about your little one. I love dogs. Do you have a picture?

Stephanie glad you are feeling better and the pneumonia had been resolved.

Stephanie Sounds like you're in good hands at Northwestern. Seems your life is destined to move in a great direction when I look at where you were and where you are now. Your future looks awesome.

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BTW I swear they reduced my drugs this time. Although I had some more issues with neuropathy,bloat and constipation I didn't seem as tired. Maybe because I controlled the aches with Aleve this time. Nothing really slowed me down this time.

Looks like another great day today. I think I will go scarf shopping today. I don't think I have enough. Winter gets cold so I'll need to wear something on my head. Hats are not going to stay on… I live way too close to the lake and the wind.

Hi all!

Wow...lots going on here!

My Onc just cld...the additional bllod work came back fine. Although...I was shocked my VitD levels went back down to 35! Bummer. But...this just goes to prove (for me) that the sun simply is NOT enough to do the job. I spent a decent amount of time in the sun this summer - so I slightly lowered my VitD3 tabs. Wrong decision. So I'm going back up 6000 IU's a day and will be retested in 3 months. It just all makes SO MUCH SENSE! lol  ; )

Hope you're all having a good day.

Budder and Carolyn - The squeaky wheel gets oiled! Best wishes.

Just checking in b/4 sleep time. I'm working at my polling place tomorrow. YIKES...have to be there at 5am and won't get home until 8:30ish...LOOOOOOOOOOOOOOONG day indeed!

Keep your fingers crossed that my alarm goes off! 

Sweet dreams all! 

HI Ladies.... all of you.  Gosh, as Laura says, there is so much going on with everyone.  I have been out of town the past few days and just spent alot of time this evening trying to catch up on all the news.  Welcome to OneToughWoman.  You sound positive and are blessed to have such a supportive fiance.

I am a couple months post chemo and really think of all of you that are going through it now.  Keep plugging along.  As the SE's accumulated with each treatment for me, I did learn more each time on how to be more proactive in alleviating them.

What's with all the infections?  My October rads thread seems to have alot of comments concerning infections also.  MRSA's, etc.  Really scary stuff.

Laura..... 6000 IU's of D3?  Everyday?  Sounds like alot.  My score was 28 and I am choosing to do 3000/day.  Enough?  Will get checked again in a a few weeks.

My DH had to work last weekend so I flew out to Seattle to spend the weekend with my daughter and family.  I got to go trick-or-treating with my 6-year old granddaughter..... in the Seattle rain, of course.  Had a wonderful time but I had to hurry home on Sunday night to get back to rads today.  20 down, 8 to go.  I will be sooooo glad when this is over.... well, I guess it never is OVER, but you know what I mean.

Morning!  Dark and 26 on my deck....brrrrrrrrrr.

Buddy.....call the surgeon today....unacceptable.  Period.  But I am so sorry that on top of the surgery you need to deal with MRSA and LE pain and swelling.  Call today!  Make noise....

Onetoughwoman....boy you have been thru it!  And you are still so happy and optimistic...I admire you.  And baby steps are the best...we learned to crawl, then walk, then run.  Its the best way to go!  Yeah...I am sure we all hear you regarding people who have gone from our lives due to this disease.  I guess what really surprised me was a few of those people were very close.  But then....I received so much love and support from strangers.  I still remember one day at the gym just before chemo started...this gal walked up to me and handed me a piece of paper and told me if I ever needed anything, or a ride, or some food or help with the house I should call her...the paper had her name, address and phone number...and she just walked away.  I walked out to my car and cried like a baby.  Today Carol is one of my very best friends...and no, she was not a bc gal, just an angel.

Marina/Laura....I don't have my levels checked until Jan but mine only went from 14 to 30 and he told me I was fine.  Yeah...don't think docs know too much about the D business, I think we read more.  So...I went back on 50,000U but just once a month.  I take 2000U in caps and then in my calcium is another 600U  so we will see.  I do know that since I cut out the weekly 50,000U my aches and pains have gone back to where they were before I started the higher doses.  So.....we will see.  I've had no ill effects from the high dose and I only started this with both my PCP and Onc's STRONG recommendation.

Susan...have a fantastic vacay!  Yeah...if only I had your problem! lol!

Carolyn....just when you think your life is back to normal...BOOM...something else!  Hopefully meds will take care of the infection and you can just go forward.  Work should be interesting...have you been doing anything at home?  If not..boy, it will be just like starting over!

Onward....sounds like you are doing well!  Just take it easy....

Joan....glad you got a chance to get out of town and see family, even if it was short.  Only 8 more......woooohoooooo!  What will you do with all your free time?

Jackie...so...what's your first project?????????  How about "toes up" and read that book you've been meaning to get to....

Donna...have fun with your Dad.  Will he be able to stay in the house?  I know what a concern that is....boy do I know!

Just finishing my 2nd cup and now off to the gym, to return something to Kohl's, stop at Butera for 2 peppers which I forgot yesterday and then home to finish all the little chores from yesterday that I never got to...as I went out and played with my Exercise Group.  Playing is fun...but now I must pay the Piper!  Have a great Tuesday everybody!

You said a mouthful  Onetoughwoman  and that along with all the thoughts, feelings, etc. is so good to get through.  Though we might wish for it to be something else......this diagnosis is a defining moment in life --- a really huge one that as you know first hand and you will be you, but a different you......already you are not playing what others perceive are the rules.  ( Like looking and acting sick and being in desperate straits ) and you are being true to your inner spirit.....and that is just what will do the most to keep you winning. 

I cleaned the dog pen with Dh yesterday ---  and probably just in time.  Coolish weather is showing up and we need to get the heat on in the doghouse.  We have two --- a smaller un-heated one for when weather is nicer and the larger with the heat. 

Taking  Maggie's dog to the vet today.  Don't know how I get myself into these things but.....

I am thinking very strong of getting some of my books ( re-reads ) out and going back through a lot of them.  It has been some time. 

Probably didn't mention ( you might know I'm not working ) that Mt. Vernon where Dh works is building a Kohls --- right by one of our favorite stores -- Staples.  Should be opening before X-mas.  I really need to get some of my projects done.....and try to save some money out of my now meager funds....as I know there will be good sales when that store opens. 

I did have it confirmed....they are not filling my position at work -- the woes are really economic, but there is some feeling that it may not go real good not to have someone on Thurs. and Fri.  so I do need to complete what I can of many of the projects here......just in case. 

Well, off to fold laundry and then get ready and go get Monya to the Vet.  See you all later.

Hugs, Jackie

I have not been on this site very often but I love the honesty and support I read.

  Buddy you have to advocate hard as they don't like to admit they have done a less then correct job in any health field. I had infections and 2 extra surgeries because of it and lost my nipples becasue of it. They wanted to send me home on oral antibiotics after the second surgery like they did after the first. I pushed back to the Infectious disease doc and said, "why would you do that, it didn't work the last time" He said I had a valid point. I was in the hospital for the third time for nine days at this point. I already had a PICC line so they sent me home on two antibiotics for 6.5 weeks then oral for a month. I was able to keep both tissue expanders (had infections in both). They said this is  so rare that if you have an infection you almost always lose them. Fight back, demand answers.

They are putting themselves at risk by not giving you discharge instructions. Call the hospital and ask to speak to the Supervisor/Manager of the patient advocate dept. Explain your issues and let them work for you.  I am a nurse and am in no way intimidated by doctors. They make mistakes and need to learn new things just like the rest of us. You feel the pain. Pain is what the patient says it is. Sorry just feel so strongly about patient care.

 Find out what if anything gets cultured. I hope you can get to feeling better.

Wendy if you want cream cheese to come with your bagel then you need to go where the Jews get bagels. Panera does not offer "real" bagels and no self respecting Jewish person would ever suggest they are the real deal. ;-)

BTW for special characters there are many lists online. I don't know if you are on a PC or Mac but here are 2 lists:

http://www.nouilles.info/keyboard_shortcuts.html
http://www.tedmontgomery.com/tutorial/altchrc.html

Wendy, that is way too much for the cream cheese.

Okay, I had a scary experience.  I went to vote and a fight broke out at the polling place.  Not a fist fight but horrible screaming at the poor people who try to just get you registered. This woman showed up at the wrong polling place and was told where her neighborhood was suppose to go.  She started yelling that she never received notice of the change in polling place and was screaming  that it was a political plot to throw votes off and that her neighborhood was being targeted.  I felt so badly because she had her young daughter with her.  The people who help you were amazingly calm and then the precint person came and walked her out but all these voters started screaming at her and it was just horrid. These voters were IN THE MIDST OF VOTING AND GOT INTO THIS SHOUTING MATCH.

So I had to share.  Of far more importance, however, would be my hope to Buddy that all is better and I hope you aere feeling well.

Jackie, when you cannot get to the library, read all the great books online (free online texts).  Most are the classics but good ones and I receive the short story of the week by email.  I will send you that link.

Onward, I know that silence of departed family. I AM SO HAPPY you had fun and that it was a space of good times!  You will always remember this as being a time of support and love.

 I hope things get easier for you Stephanie in Plano.  IT sure does sound like you have had a tough time.  I guess I had wonderful luck because my friends were good to me.  The people on this thread have proved to be wonderful friends and so perhaps you can rely on that to make it a bit easier.  I know one friend (my best in fact) promised to go to chemo and then pulled out.  I felt awful that she did.  I later found out that I totally misunderstood and that she was really sick when I thought she was faking it.  I was so sensitive in those days and I truly misunderstood that whole situation.  Take care and I hope you experience happy times with family and friends.

All packed for my LA trip and the plane goes tomorrow.  I am worried about my cat but the daughters are coming to give her TLC and food.  I am getting way too fond of this cat.

Take and be careful entering polling places!

Susan

makmak I did send my onc an email about Acetyl L- Carnatine and 2 other alternative recommendations for neuropathy.. Unfortunately she forwarded the email Nurse Ratched for response. I don't know if they discussed it by Nurse Ratched basically said "they" do not support these alternatives and there is no cure for neuropathy but time. When I go in I'll ask if it's OK to try. I mean if it's not going to conflict with any of the drugs/chemo then why can't I at least try, right?

Well I know Laura is very happy about the elections so far but I'm pretty sad. Looks like nothing will get done in the next 2 years.

Lago--  I just realized that NR is one of the reasons I didn't stay at Rush.  She's the main nurse for Dr C right?  not in the TX room.  She would have been the follow up main contact and refused to give me the time to get more information before my first chemo, said we'd deal with it then and only does one chemo training per patient.  Pfsst.  Another one to ask about is Calcium D-Glucarate.  I'm a bit sad too.  3 TAC down and half way there!  Woot.

"Hope is a renewable option:
If you run out of it at the end of the day, you get to start over in the morning."
Barbara Kingsolver