Illinois ladies facing bc
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Way too many posts from me today, but I saw this thingy on yahoo for those women who have trouble sleeping (and there seems to be a number of us), so for what it is worth:
http://shine.yahoo.com/event/vitality/10-foods-that-can-help-you-sleep-2433545/
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Hello Ladies - I have been travelling for work and now am trying to catch-up on all the posts. A big welcome to the new girls. So happy for Julie. And Carolyn, I had to smile when I saw your posts because it made me so happy that you are up to it and keeping us updated.
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Julie ....... oh so happy for you. Now hope that the meds help with that vertigo. I have never experienced that, but sounds scarey.
Zap... I love your hair color. I would love it if mine were coming in the same as yours, but it is what Laura calls "pencil lead' color. Yuck! And I don't mind if it continues to come back straight, because I would not have a clue what to do with curls.
Lago...back at you!
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............................................ KEEP IT GOING .................................................0 -
Welcome to the new gals......consider youself home.
Yep.......its 2:00am just can't sleep Leaving for FL in a few hours and my mind is racing trying to remember all those last minute things to do before locking the door behind me.
Love the snowballs!
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............................................ KEEP IT GOING .................................................Navy
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Logged more time in at the ER yesterday. My picck line was supposed to ge cleaned on Monday when I was in th hospital, All that needed to be done buy the nurses on the floor was to call picck line services. Both my sister and I kept asking for this and they never got around to it. Also, they didn't appear to know how to use the picck line properly because the line was hanging down to my wrist. Nurses kept saying that's the way it was when you came in. I knew darn well it was not. By the time it was time to go home the picck line still had not been changed. I came home and it started bleeding all over the place. Luckily we have some friends who are nurses who came over and fixed me up - but we didn't have the sugglies needed to do everything we needed to do. Home health nurse came the next day after delivery drop and said she would not touch the arm the way it looked. She wa conncered the line had been pulled out and that I might have another problem which I can't think of right now. So I was off to the hospital. Good thing I went as the k-ray showed that the pick line was in deed out of place. I also had a ultrasound - luckily that was nirmal. No one wanted to touch the picck line to take it out. The doctor didn't want to touch it. None of the norses would get neer it. Finally the dr pulled it out after I threatened to pull it out myself. We also got the wrong medication again from the hosptial. Had to call bad and discuss, Pharmacy said that they don't make the med that was written. buy the way the last admisstion where there was a problem with the drugs, it was not the pharnacy's falt.
My poor sister is trying to keep all the meds straight for me. It is not an easy thing to do. I'm pretty sure that I have all the right meds and am taking them as I'm supposed to be. I am determined not to go back to the hospital.
Sorry I can't keep the snowball fight going. It's too difficult on my eyes.
Carolyn
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sorry Carolyn. It's so annoying to have such a mess. Personally I don't know who people do it when they are ill. The system is such a mess. I question everything these days. The pick line issue is BS though.sorry about the snow fight. Here's a snowball for you. It might be easier on the yes: ❄
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My day yesterday was consumed by the new health insurance company. It will be a while till we go on my husband's new job insurance so we had to sign up for the state. For some reason they didn't have the prescription part set up. Got that all straightened out and got my Neulasta prescription transferred to their new pharmacy BUT now the new insurance needs the note from the onc. Still not straightened out.
I usually have it delivered this coming Friday since they won't deliver on Mondays, the following Tuesday is chemo and I don't want to wait for the day I need it on Wednesday. Oh and my emails for some reason no longer get to my onc. Guess I will have to wait till Monday. Need to check if we have to do that for the emend too. What a PITA.
and note that the insurance is a switch from BC&BS of MA to BC&BS of IL… they are considered 2 completely different companies.
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The glory of friendship is not the outstretched hand, nor the kindly smile...it's the spiritual inspiration that comes to one when he discovers that someone else believes in him and is willing to trust him with his friendship.
Ralph Waldo Emerson
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Omy goodness......Carolyn, many hugs coming your way and I do HOPE,HOPE,HOPE, that you do have all your meds correct and can stay home and not have to return to hospital. How terrifically frustrating for everyone this must be.Seems to me, someone needs to figure out what is needed and spell it out so that any time you need care less balls are dropped, misplaced, or neglected all together.
Sounds like you had a lot of frustration to undergo as well Lago. I'm starting to see how fortunate I truly was during 99 and 9/10ths. of my care during active txs. I sure hope all gets ironed out. Glad that your txs to date have not gone down hard as I'm sure it makes some of these bumps coming a little easier overall.
Artic air is surrounding us down here in southern Illinois......not going to be very much fun out of doors. Well, I don't have much reason to be out other than doing the feral cats. Hope you all stay well. I'll catch up with you all later.
Hugs, Jackie
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Happy Saturday to you all. Looks like I have lots of reading to do here just to catch up on everyone. Back at school and was very busy this week. Had one of my kids have a bad asthma attack and had to called 911. Not a good start to the school year. lol I am already looking forward to spring break.
Carolyn...OMG what are they doing at Rush??? PIC lines can get infected, they know that. I think it may be time to turn on the b**** mode to get things done. I would talk with your md about these issues you are having. I hope all works out well. Maybe they can have the case manager help out. Just a thought.
Julie....headaches....I am so glad you got a speedy report. Please be well and if you need anything call.
Lago... Have BC/BS insurance. They have paid for all my bills this year. The thing they don't cover is well visits. But that is in my school plan. Dumb ugh. Love the snow ball fight but don't know how to do it. I do like looking at it. Hope you are feeling better too.
Navymom...enjoy your time in Florida.Warm sun shine is good for the soul as is the Vit D.
Lisa..how are you doing with your chemo txs? Hope you are tolerating them ok. Thinking of you often. Hang in there. Hugs.
Zap.. thanks for the info and we are looking. Slow process but looking. Got a realtor to take her around to look at apts..So we shall see.
Laura... had lunch without me!! I know you had fun.
Marina..good luck in Seattle for your trail. Hoping all goes well..How is the baby doing?
Rita...going to Fl soon. can you pack me in your suite case. I need a vac lol
Welcome to all the new girls here. We are a fun group who are full of info and support. We love to chat here. lol
To all the girls I missed I am thinking of you and hope you are all doing well.
As for me I still need to put Xmas away...so I am off to to that now.
Have a wonderful Saturday. Stay warm and remember to be healthy....be happy and enjoy!!
BJ
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BJ Well visit? What is that? Do you mean they won't cover my yearly physical and gyno visit? The BC&BC is a ppo so I assumed they would be basically the same as what I had out of MA BC$BS. BTW I don't have kids. Not sure if well visits are something kids get.0
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Hi girls it sounds like it been a nightmare with the insurance changes lago. That has to be a PITA as you said. I sometimes wonder how some people can cross all the t's and dot the i right have so much trouble. You have enough going on so to have to deal with that has to suck. I hope it all gets cleared up soon.
I got my final path report. The cancer stayed in my breast, whew. I did find out though I had Paget disease of the nipple. I was shocked. So was the BS nurse. I had no issues so that was a surprise. So its off to the onco Tuesday to see what else has to be done.
Stay warm all its so flippn cold out there. Im so glad I dont have to get out in it.
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Carolyn - I'm so sorry you're having such problems with your PICC line. There is no reason for them to be dropping the ball on something like that. There should be someone who is devoted to dealing with the PICC lines at a large hospital like that. BJ is right and maybe it's time for your sister to put her foot down and be insistent that this is dealt with properly. It's a shame that you had to have it pulled out.
Lago - I have BC/BS PPO and I've never had problems with coverage for my annual exams. Each company can set up different coverages/deductibles within their own plans. It's when I try and go out-of-network that things get pretty expensive. I did this with my first PS doc and actually regret it.
Paula - Glad to hear everything was contained in the breast.
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I see. We were told that out of network was covered at 70% (just like BC&BC of MA). I hope so because my PS is out of network.
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Ok, now I understand "the snowball effect" better!
Carolyn, if your sister could list all these mistakes that sound like negligence and then send this list to doctor, the hospital, etc. things might straighten up quickly. I know you need rest now, but perhaps she oculd do that. During crisis, we tend to shelve bad experiences because we are preoccupied with just trying to get through the crisis. When my mom went to a hospital once, terrible things happened and my DH and I were outraged but we never followed up with complaints as we were exhausted just trying to keep up. We should have addressed the issues with a hospital administrator. What you describe is terrible.
Have fun in Florida, Navy!
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Zap that reminds me:
Carolyn here is the number of patient relations at RUSH: 312.942.6979
I haven't had to use that number but came close once.
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Hi everyone. It looks like I will be starting chemo the week after this. Now that it is getting close I am starting to freak out a little bit. I was brushing my hair this morning and it hit me that in 3 or 4 weeks I will be bald. I realize I should begin shopping for a wig, but I don't know where to start. Where is a good place to go in the Chicago area or northern suburbs? I've never liked wearing hats and I imagine a wig is even more uncomfortable. Any advice on picking one that is reasonably comfortable and easy to take care of?
Carolyn - I feel for you. My father-in-law had a picc line put in a few weeks ago and called us in the middle of the night in a panic because he was bleeding all over the place and thought he was dying. It turned out the picc line was put in incorrectly. He is an 82 year old man with lymphoma and could have bled to death.
Lago - I just sent you a message. Sorry to hear about your insurance troubles. I personally think the insurance industry hires people whose sole job is to figure out how to make it even more difficult for us to jump through all the hoops.
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Hi Webu -- I am just a couple of weeks ahead of you on this... I had my first chemo on 12/30. I too was completely freaked out leading up to it, and while everyone tells you the reality of it isn't as bad as the fear of it, I still freaked out and wept up a storm for the first ten minutes of the infusion, then realized it all seemed to be going ok, and settled down ok. Then of course by the time I was home, the steroids kicked in, and for the next three or four days I felt like I could rule the world, what an emotional confidence booster!
On the wig thing.... I just got back from having my head shaved, and am wearing my wig right now. My kids were prepared that Mom might look a little different when I came home, and then were surprised to say, wow you look almost exactly the same!
I am in the Western Suburbs, so I don't think the salon I used would be convenient for you, but Naturally Yours on Route 83 in Willowbrook ( I think) is very well stocked specifically for hair loss due to chemo. I went in for a consultation about a month ago, and I found that helpful.... they had wigs in my style, but not the right color, so had to special order for me, and the wig I selected was waiting for me today. They shaved my head (I wanted to preempt letting it fall out naturally, that's of course a personal decision), fitted and trimmed the wig, and so far, I'm not finding it terribly uncomfortable. I am not a hat person, but I did buy a few scarves and sleeping caps as well.
Also, the American Cancer Society will give you a free wig, and it's very high quality. I also got a wig from them, and had it trimmed at the salon today, so I have a primary wig and a backup.
Hope this helps! Today went much easier than I thought it would, kind of feels like I now have the worst of the chemo behind me...... the scary first treatment, and the hair...... unless the side effects become much more difficult.
I'm sure there is a similar salon on the Northern Suburbs, that some of the women here will know about..... but I can't tell you how helpful I found it to have the consultation ahead of time, and know that the right wig was waiting for me......
Lisa
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Hi ladies -
Glad to hear your good news Julieb. How scary.
Welcome to the new girls. What a great story from Charlyn!
Thinking about you Carolyn - what horrible hospital stories. I think your sister needs to call the number lago provided.
I am just getting back to normal from a horrible cold/sinus infection. Went to Dr. earlier in the week and got antibiotics. My head was killing me. I feel a bit better each day.
Hugs to everyone!
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Webu....Lisa gave you some great advice. I think anyone normal will be just under and maybe slightly over totally terrified with the thought of doing chemo. It is not everyday that you line up for a dose of poison and understandable that big time fear of the un-known sets our whole system on edge at the idea of even thinking about it. Do rest assured that for most......we end up finding it so anti-climatic and feel like old pro's in no time --- none-the-less all wishing still that we did not have to do it. Doing all you can to get clear of your diagnosis though will take precedence and hopefully --- other than se's ( side effects ) which they have very good answers for now days.
These women are excellent for advice and the hand-holding is something special. Hope you will give us a shout any time
Connie....glad you got something for your cold and sinus. Sounds just totally miserable....especially this time of yr. with the cold air outside to "wake" you up with a real bang. Hope you are a whole lot better really soon.
Hugs, Jackie
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Everyone, thanks for your posts - what a wonderful group! I'm bad right now and not taking my Femara. I already had my overies out voluntarily and my estrogen levels are sooo low that I get these weird panic attacks. when I stop the Femara, it helps. My onc REALLY wants me on the Femara - has anyone experienced this?
Valgal, so sorry to hear about your brother and everything you are going through. The only thing that helps my depression is keeping some sort of schedule and REALLY GOOD SLEEP.
I started taking Melatonin which raises seratonin levels in my first week of chemo. I think it helped the depression, because when I stopped I started having crying spells. I was in Big Bear, CA and I slept 10 hours straight after taking 25 mg (most people should start out slow with 1 -3 mg). I felt healed the next day and my tumor marker went in 1/2. I found out later that Melatonin is a huge antioxident. I did a lot of dietary changes to raise the PH in my body to alkaline as it was very acidic. I bought PH strips and tested myself under my tongue in the morning. I was very acidic when I was sick and after juicing became alkaline. No one really believes my diet made the cancer go away, but I felt I was helping myself and I believed in it so it wouldn't come back after the treatments knocked it out. My husband and I juiced vegetables, even cabbage, and fruits. I took Turmeric which is a huge antioxident for cancer and ate Indian food which has it in it. If something said it would help cancer, I did it from meditation to taking Calcium D Glucaret as it can help your liver rid the body of estrogen. When we have too little fiber, a bacteria stops gluconderaise from combining with estrogen to eliminate it from the body. I never at fiber, I had a horrible diet and it went directly to my liver (estrogen positive +3). The Tamoxifen made the walls of my uterus thick and can cause uterine cancer, so I had them take out my overies. I too tolerated Tamoxifen, however it works much differently that AI's. They stop estrogen before it attaches to a cell and Tamoxifen works after the fact - something to think about.....good look - keep your chin up. Whenever I was depressed, I would watch a comedy like Rush Hour or remember my favorite saying from the movie Tombstone "there is no normal life, there is just life, so get on with it! easier said than done, but you sound too wonderful a person to have all this on your shoulders. Sometimes when it gets too much, I tell God, "ok, God this is too much for me right now, you can have it for awhile" and sometimes picturing your troubles lifting off of you onto to someone elses shoulders helps. Maybe i'm just crazy. God bless all of you! charlyn bernal
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Okay I am a little freaked out. My DD sent me a link about cleaning services provided to people in chemo. Sent it so my e-mail and I copied and pasted the link to this thread. When I checked on it, it was my personal mailbox! I better be careful what I do next time,
Anyway, there is a service called Cleaning for a Reason and then clean your house free if you are in treatment.
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Rita, sorry you are starting chemo. I did some things that really helped when my intestines went crazy which is papaya and non fat plain yogurt and it would settle down. eat soft things like oatmeal, etc. I also bought ginger root, peeled the skin and either juiced it in the juicer with my juice or just ate a few pieces and it did help the nausia - I didn't even take the nausia pills. there is also a natural ginger ale, called Ginger Beer sweetened with pinapple and has no preservatives which helped the nausia too. Stay away from white refined sugar, alcohol, red meats as they are very acidic, white flour as it can stay in your intestines up to 3 days. Try to eat everything fresh. Be careful when your white cells could be low and don't eat anything that could have E-Coli like fresh spinach, etc. it's usually only about 5 days depending on the chemo when your white cells go down.Good sources of protein like lean chicken and turkey and egg whites. They say you should have 2x as much protein when you are trying to fight an illness or heal. the 2 best books I have and reference are...
How to Prevent and Treat Cancer with Natural Medicine (lots of info on what to do and not do on chemo).
Enclopedia of Healing Foods (has a great chapter on Acidity and charts on acidity of foods and nutrient content).
both authored by Michael Murry and cheap on Amazon
I was born in Illinois but have lived in LA for the last 25 years.....I do make it home a lot though if anyone gets together....
All the best....!
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Webu I too went to Naturally Yours and got a wig from the American Cancer Society as well. Funny thing though I have only worn my wig twice. Here are some other resources:
http://www.networkofstrength.org/illinois/programs/otherwigs.php#loopI wear scarves all the time. If you do go the scarf route I did find a few nice/affordable ones at Naturally Yours. I purchases several scarves from: http://www.anokhiusa.com .
Naturally Yours also sells Anokhi scarves and if I remember they were a bit less exsensive than on the site. Naturally Yours also sells hats, mastectomy bras etc. so it might be worth the trip. They toldme my hair would fall out on day 14 based on the chemo I was having… came out on the 15th day. They really know what's going on.
You might also like Hats for You (based in Chicago). Also you can purchase fabric remnents at the fabric store. Be sure that you don't get anything itchy or too slippery. I prefer soft cotton or rayon but some folks like stuff with a little stretch to it. (Devon St in the Indian/Pakistani hood has some great fabric stores. I have to go there myself.)
Free hats & scarves for cancer patients:
franceluxe.com Good Wishes Scarf
gailafund.org Free hatwrapI highly recommend the Looks Good Feel Better program. They have them all over the place. I went to 2 held at Rush (I believe the first Friday of every month). They talk about wigs, makeup, skin care, scarves. I went to one just before I started chemo and one during chemo. It's free. The side has some great info under the beauty guide too.
This is getting a bit TMI so I'll save the chemo advice for later. I assume you will be getting the same cocktail as me so I have some tips for sure.
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Sorry about the nail issues lago! My issues were lashes. I know it is toug stuff but will get to heal as we all do in areas we need to!!
hair...lol.. mine is all curl!!!Also came back salt and pepper when i was done!!! I am a reddish auburn,brunette.. and it is all color now!!!IT works!!!!
Carolyn.. sending healing hugs and all the best throughts.Rush does know their stuff and cannot say enough about them! Here for you!!!
WELCOME to ALL the New comers!!!! You will find all the best support here and know that you are never alone before,during and after this journey!!!
Little under the weather and hope this goes away soon.grrrrrr!!!Teaching had me worn and germs flying everywhere!!!!
Sweet dreams and Laura..had my cherry juice tonight!!!
Donna
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Webu - I used Jerome Krause (wig makers) in Skokie. I went before my hair fell out and they made me a wig that matched my hair perfectly. Make sure you get a prescription for the wig from your doctor and a reciept for the wig. I was able to submit mine and insurance paid for most, if not all, of it.
Lago - Just remember that 70% payment for out of network providers is 70% of "reasonable and customary" charges - per BC/BS, and after your dedictible. Some PS docs charge above what insurance considers reasonable and customary.
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WIGS - paulayoung.com -
JMO...you don't need to spend mega bucks on a wig that you'll wear for a few months.
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Like Rene, I got my wig at Jerome Krause in Skokie. They show you all price ranges and I felt no pressure. I didn't want to ask my DH to shave my head and I had no clue how to do that, so they did that for me at Krause. I went to choose a wig as soon as I started chemo. When I was losing my hair (14 days after first chemo) I went to get the shave and they had my wig already for me. Like LIsa, my family reacted very favorably to it. I had a wedding to attend to that evening and my son in law came up to me whispered that I looked lovely. I almost fell apart with relief and love for him. I think the whole thing makes some people nervous, and when you come out looking good, they relax. Good luck!
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I just lost my post - darn it!
WIGS - bought several wigs via mail - didn't like the way they looked on me. Went to Naturally Yours. They are great but prisey, Ins covered my wig. The woman who handles the wig has a background in hairdressing. She showed me a number of style, Cut the wig to fit my facial size and hand sewed the inside of the wig and I received the stuff to wash the wig with. Also an added bonus - I was getting my nails done and paged through a hair magazine and what did I see? A model with my hairstyle! How coal.
Chemo - everyone's experience is different but it seems universal that everyone is afraid of it. Try not to think about it before you have to go fot it - it could make you end up with a pank attack or something. You really won't know how you are going to feel until after the first session anyway.
PIcck line - my sister is deffinitely on top of this. Before she was at home with the kids she worked in medical malpractice claims. She was getting so steemed at the hosptial when they were talking down to her. The mninute she mentioned that she knows what's what and used to be in med mal all of sudden the nurses were a lot nicer and a free parking pass came out. My sister has been in touch with my Onc. My Onc has been wonderful. She tried to get me to the Onc floor but there were too many people. She has stopped in and /or called me in addition to sending in the resident. Luckily I don't need the picck line anymore. Meds are stying down abd sunce I'm not in the hosptal I'm not having my blood drawn all the time.
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Clinical Study - I may not be able to be part of the study I had been talking about. I'm on steriods and you have to have been off steriods for a certain period of time. So I might just end up on regular chemo, Oh well.
On a happy note - I think radation might have worked because I think my eyesight is getting better and my typing is also. I can actually rad the blog posts once instead of 3 times trying to figure out what's going on with everyone,] Also on a good note, friends of mine from grammer school are coming over to visit me today. I am really happy because I haven't seen them in years.
I have been strugglieng with loss of fredome issues. Yesterday my sister took her family out and she didn't want to leave me alone so I had a "play date"(my sarcastic term not my sisters) at mom and dads house. I love my parents but they drive me nuts some time. The minute the clock strickes the appointed houre I get the " Did you take your medicine?" Well of course not, You didn't give me a chance. I just miss life as usual. I don't like having to ask my sister if we can go to Panerra for lunch, I just want to go. Oh well I'm stuck like this. At lest she takes me!
I suspect that my 8 year old neice understands how sick I am. She is contstantly asking how I am feeling and If I'm ok. I think I'll have a talk with her and let her know that I'm doing everything I can to get better and that the dr's are taking good car of me and that the best thing she could do for me is to pray. I'd hate to think she is stessed out about me.
Hopw everyone is feeling well today.
Love to all,
Carolyn
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Well I spent almost nothing thru Cancer society.. TLC catalogue and had three to four different wigs and had fun with it and paid around $40.00 for them aqnd received compliments! I still have them and refuse to throw them out as to me i am afraid it is bad luck!!!
That news in Tucson is so sad and tragic. It is all timing, being in the wrong place at the wrong time.We are moving there and just shows you, we are not safe anymore anywhere!GOD speed to that nine year old girl who is gone.
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Carolyn so glad you are seeing better. Yah Rads. We can start that snowball fight again once things are back to normal ;-) …and bless you for staying with your parents. Parents drive us all crazy.
Wigs I found Naturally Yours a lot less expensive than most places but if you buy them online they are less expensive. My insurance covered up to $500 which covered the cost of Naturally Yours including the short cut they gave me (never actually shaved it), wig styling, shampoo, brush and wig stand. I wanted to check out Jerome Kraus but never got a chance. I heard both good and bad about them. I will admit that I still think my wig doesn't fit properly and when I went back for a second trim she said it was fine. I think I needed some stitching too but she was in a rush to get out since I was her last appointment… and I didn't realize that till I was paying for a scarf and saw her run out the door.
Rene I totally understand regarding out "reasonable costs" My PS actually does reconstruction at cost or close to it. Most of his current practice is Gold Coast/North Shore non insurance procedures. He does very well. The reconstruction part he does as his way of "giving back" I paid less than 1/6 of his charges. All the hospitals (Rush) and other surgical places he uses are in-network so it's only his charges I have to worry about.
I really did want to go with an in-network doctor but the other one that was recommended by my BS totally turned me off. I know some people here love him I was more upset when I left his office then when I came in. There are other PS on staff at Rush but I knew nothing about them and how often they do breast reconstruction. I figured it's best to stick with someone my BS is used to working with since the TEs were installed at the same surgery as the BMX.
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