Class of 2009 - Sisters in the same time frame
Comments
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Juanelle, I totally understand all about the remodeling. We started remodeling in Jan. of this year because our daughter that still lives at home was expecting our granddaughter. It took my hubby till May to get it finished then he started on the flooring in the house. First the bathrooms and the kitchen and utility room, he laid ceramic tile, that is now done, however, he has started on the dining room and the living room and is laying more ceramic tile (which he finished tonight) and will be laying tongue and groove wood flooring. I want it done yesterday so I can decorated for the upcoming Christmas holidays! My house looks like a hurricane blew through. LOL! Other than that and the insurance issues everything is just great. Also, like you I have a very good job, but I am also still supporting my daughter and now my 11 month old granddaughter. It takes a lot to get by.
Sherri - I guess I will be doing what you are doing and setting up payment plans to meet deductibles and what the insurance didn't cover. Then here we will go again with the new year. I'm just wondering how much my insurance is going to leave me owing on my Rads?
I know this probably isn't the place to complain. I'm sorry, but lately I find myself wanting to vent alot! I think I am going through the grieving process and right now I'm angry, very angry about this disease and what it is doing to me, my self esteem and my finances and my personal life. Has anyone else found themselves feeling this way during this long and drawn out process with BC? Today I got really mad about the fact that I'm going to have to have tattoos on my breast for Rads! Is that stupid or what? O.k. enough of the ranting.
Everyone have a very Happy Thanksgiving!
Renee
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Good morning everyone.
It's terrible to be having to go through treatment and get well AND worry about money. I don't know what the solution is.
By the time I started my radiation I had met my deductible and also major medical co-pay so I thought at least their would be no more out of pocket expense. Well, pretty early on I got a bill showing $200.00 a day was considered investigational and not covered, That would add up to $7200.00! I took the bill in and asked if whatever was not covered was necessary and could that part be eliminated. The doctor said they would write off what my insurance did not cover. Claims went back and forth for months, I kept getting gradually smaller bills, had to make MANY phone calls to remind people what I was told, almost got sent to collections, and finally it looks like it was all cancellled out. So don't give up and it never hurts to ask!
So far it looks like we all have a lot to be thankful for. For all of you who are in the middle of surgery or radiation or chemotherapy, my heart is with you. God bless us all and keep us in His care.
pam
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Deductibles, co-pays, prescriptions all differnt parts of this. I am fortunate to have decent insurance, and we have still had to pay over $4000 out of pocket this year and this does not include prescriptions, travel, creams, ointments etc. I am truly blessed to have a job and the resources to pay all of it. I hope that all who have a Great relaxing stress free Thanksgiving. My sons will not be home but we will talk on the phone, my sons will be together at my brothers in Albuquerque so that is nice. Hopfully they make it home for Christmas.
I am two months out of Radiation, my breast had turned tan color, the swelling was gone, occasionally itching and then bang, it became red, itchy, warm again. I went to see my BS and he said this is normal and may occur for the next year, humm not what they told me at Rads, oh well as long as I know it it is normal. Pain and achiness comes and goes and was told that too may be ongoing for a long time. Anyone else have this problem?
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I finished rads in September. I notice lately that I seem to be achy and sore more so now than during rads. I think because the swelling has gone down, I am more tender. Still getting some of those shooting pains also. Skin in very itchy and last night a layer of skin under the breast peeled off - so I guess this is "normal". Have broken out my glaxal base cream again and that should take care of the itchiness! (I hope!)
I finally got to see a med. onc. and now know for sure that there will be no chemo for me!! Very relieved, but I guess I will always carry the "what if..."
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Mimi ~ I too have the medical bills rolling in from my surgery and stuff. I have Empire Blue Cross Blue Shield and their idea of coverage sucks. I will not even visit those bills right now. They can just sit there for all I care.
I also am angry and then sad quite often. I get mad at other people's trivial complaints. I know to them they are valid but when one is going through what we are a simple life problem to deal with and not this would be a dream come true. I never had self confidence or thought of myself as a pretty girl, but let me tell you this.... I have never felt uglier in my life then I do right now. Scars where my breasts used to be, fatter then I have ever been in my life (even pregnant), bald like a chicken and feeling green around the gills most of the time is just not fun. So yes I too am sorry to complain but who else can understand but you girls.
Have a good day everyone. Hugs !
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Mimi- I am so happy for you that you got a good report from your onc and that you like him as well! That is wonderful that you don't have to do chemo. I totally understand your mood swings lately. You go thru this whirlwind of diagnosis, surgeries, then you get your treatment plan and everything slows down considerably. Just in time for the bills to start coming in! But, we all just have to remember that we are lucky ladies. We are lucky to be as strong as we are to go thru this and have the support of our family and friends.
Juanelle-congrats on the great WBC count! I hope you have a wonderful holiday surrounded by your family!
We are traveling to Iowa to see my husbands family and I am very much looking forward to getting away for just a couple days! I am very thankful for all of the wonderful people in my life that have been with me on this journey. I wouldn't trade one minute! BC sucks, no doubt about it, but it has shown me strength in myself I never knew was there! And I found all of you, and for that I am very thankful! I wish all of you a wonderful holiday!
God Bless you all!
Hugs
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Alicia- Just want to let you know that you are not ugly! You are a beautiful woman inside and out! Vent as much as you like, that is what we are here for
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Hi Everyone - I just found you all, and really appreciate finding sisters in the same boat. I just typed out a lengthy post, pouring out my heart and experiences to-date, and of course it was lost because I need to re-sign-in...UGH! Anyway - my short(er) story: I accidentally found a lump in my right breast last January. After everyone along the way telling me it's "not typical of cancer", even the guy doing the biopsy, it turned out to be both DCIS and IDC, however the tumor was IDC, 4.2cm, plus a 10cm multifocal condition of IDC, and 4 of 11 lymph nodes were positive after the dissection - Stage 3A. I had a modified radical mastectomy on the right, and a simple/prophylactic mastectomy on the left. I just completed 6 rounds/3 weeks apart of Adriamycin, Taxotere and Cytoxan and will begin 33 rounds of radiation on 12/1, and I will wait for reconstruction for about a year.
I'm 46 years old with a 4.5 year old daughter and a husband of almost 6 years. This journey has me questioning my marriage, and it makes my heart ache worse than anything else. I now realize that my husband is ultimately a pretty selfish person, but I didn't know this until I saw how he reacted to me during chemo. My parents are both deceased, so my only immediate family (from my youth) is my sister who is a very busy executive who lives more than 4 hours away. Basically this left me with nobody in my life able or willing to help take care of me during treatment. I had long-distance support, but that was it because my friends all work, and my husband's mother and sister (who live very close) were apparently incapable of helping me (or uninterested?). Seeing his family's selfish reaction explains a little of my husband's behavior, but I feel completely blindsided by the lack of compassion from him. We had a major blowout recently because he claimed he was shriveling from lack of love and attention. He claims I have been disappointing him with the infrequency of sex for years (it's called having a toddler and working full time and not getting help at home), and then, during the end of the last chemo cycle, it all comes to a head because I had cut him off from sex due to my painful and weak mucous linings (all the way from the mouth to the entire G.I. tract and the girl parts too). Emotionally I was completely abandoned by my husband during the worst time in my life and I'm struggling with getting back to the reason we fell in love. I kept asking him to open up to me, but he never did and he says now that he doesn't even remember me asking. To him - sex is love, sex is intimacy and I had cut him off so he cut me off. @$#%&*!!!!! Anyway - we are trying to find eachother again, and a few nights ago we tried being intimate, and the pain for me was as if I was being violated with knives. WHY DIDN'T ANYONE WARN ME ABOUT THIS?????? To me, it's the single biggest failing in my journey, that nobody on my team bothered to tell me that sex could become impossible without medical help. Yesterday I got Vagifem, and I pray it works. Could I feel any less sexy? Bald, scars where my boobs used to be, and now my vagina is beyond recognition. Are there any other hidden issues that are going to surprise me?
I'm thankful you all are here. Going through this without my mother or anyone else who places my health and happiness as a priority has been extremely difficult, and sometimes I feel like I just learned there is no Santa Claus and life is just plain tough. Thank goodness for my beautiful young daughter, Chloe, who has kept me smiling despite myself. She's a sparkplug, full of beauty and good energy and laughter. I need to keep it together for her, and I will :-)
Thanks to you all for sharing your experiences and helping me to know that I'm not alone.
-Ali
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Did I say that was a shorter post? Didn't end up that way...
Thanks for enduring the novel! 0 -
ALICIA!!! You are a beautiful person, inside and out. This horrible phase will pass and your superficial beauty will return but the richness of who you are is here now. If you look 1/10 as good as your avatar you are looking good! Don't let this bad time discourage you. We need you here telling us how good we look!!! BTW, my picture is pre-diagnosis
Gotta admit.. I am feeling and looking older!Have a great family time, Jen. Who would we talk to if we didn't have each other here?
Happy Thanksgiving to all. I am thankful for knowing such a wonderful group of women.
pam
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Dearest Ali,
My heart breaks to read your post and know how alone you have been. We here have all agreed no one, NO ONE, understands what we are going through. But at least most people rise to the occasion and pretend to be interested or care. You have just been abandoned by the people who should be supporting you through this terrible time. Thank goodness you have your daughter to give you strength and purpose. Have you thought about some kind of counseling with your husband? Obviously he did not learn empathy from his family but maybe a counselor could help him see how he has abandoned you at your most vulnerable moment.
There is little we can do here but listen. Maybe being able to communicate your pain with others here can give you some comfort. Time will pass and you will be stronger... your health and your soul both.
pam
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Pam - Thanks for your sweet reply to my gushing first post with the group. I think I needed to pour it all out to a group of women who truly know what it can be like. I'm really enjoying seeing a group of amazing, strong women who can share and help and heal eachother with such openness and kindness.
I wanted to add that aside from an astonishing lack of innate sympathy, my husband does love me in the best way he knows how and he's working on it and getting better just in the past week. His timing really was awful, but he is a good man and an incredible father...now our job is to work on where we both went wrong and hopefully end up closer and stronger.
Hope you all have a really nice Thanksgiving!
Ali
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Ladies once again thanks for all the support. I guess from all the posts it's all a normal part of this nasty disease to have mood swings, but I really hate it!
Alicia - I just want you to know that I think you look great! Your pic in your Avatar is awesome. I have never seen you pre BC but you look wonderful!!! Don't be so down on yourself.
Ali - I will be praying for you and your husband. I really hope you two can work through and figure everything out. BC I have learned its tough on the entire family not just on the person that is diagnosed. But we do need our families, especially our spouses or significant others to be as supportive as they can be to help us get through this difficult time in our life.
Take Care
Renee
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Jen/Pam thank you so much for kind words. In reality I know the superficial beauty is so unimportant but it sure would be a nice thing. Thanks again my special lady friends.
Hugs ~Ali~ wow I so relate to so much of what you wrote about. Although I haven't had the vag problems yet, I'm sure they will come. The chemo nurse gave me a pamplet on the sexual problems of all of this. It is so hard to understand men and sex. It is a complete necessity to them. Like food and water. I always say men are simply dogs that talk. While my husband is not nearly as bad as yours. He does go about life as normal, his work schedule, etc. No shorter days or real help at home. Although he does take me to each treatment. But reading your post does make me appreciate him more, I have found myself angy with him at just leaving me alone feeling like shit from chemo to tend to the kids, get them everywhere they need to be etc. I am so sorry for all you are enduring. Just know no marriage is perfect ~ men are simply different creatures. There are those few special ones but they are all taken and hard to find. We are here for you, like Pam said if nothing else to be an ear to listen (or eyes to read?!)
We are sisters in this thing together. We have to try to stay positive it is important for us as much as we can, and know there will be a light at the end of that tunnel for us soon. And hopefully life has much more in store for us all.Hugs ladies.... big HUGS !!!
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Alicia, YOU ARE BEAUTIFUL...You have a lovely smile, it is warm and friendly..Your hair will grow back and you will get use to your new one breast self.
Carol, wow tanned breasts..who doesn't want tanned breasts.
Mimi, and Juanelle I to am about to take on renovations. I mentioned to my DH on Fri. lets think about replacing our yucky carpets with hardwood...I meant in the future, I guess he thought I said this xmas...Now I have 36 boxes of birch hardwood sitting in my living room and dining room...They better be gone before the tree gets put up, next week.
Ali, welcome to our little group. You have come to the perfect place to vent...who doesn't need to vent these days..C is hard on the whole family. Our support team doesn't always know how to support us...I find that sometimes people who you know knows about my cancer don't feel comfortable to even ask how I am doing...They just ignore my bald head. Sure wish they would at least ask how I am doing...perhaps they don't want to upset me. Bottom line, cancer sucks for everyone.
later lovely ladies
Michele
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ali there is lot's on online support, but you need some real life help. Pehaps the American Cancer Society has a volunteer who can take you to chemo, or your church? Maybe even a bc charity?
JMA....I agree I hate empire BCBS, although my BS was in network. I am changing to united 1/1 with no love lost!
Maybe a look good feel better would be cheering!
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Thank you Michele... I tell you I am so bald ~ do we lose every hair on our heads? I sure think I will. I look like a plucked chicken, I hate how I look. There are spots I have not even a stubble just skin !!!!!!! ugh ~ And Michele I have don't have ONE breast. But I will have 2 fake ones come Spring ~ like they say the other ones tried to KILL me.
Good luck to you girls with Renovations. My DH has a design/build company and does lots of renovations. It does not seem fun but is a necessity. I want my bedroom rug ripped up and hardwood put down. Hell will probably freeze over before it gets done. (nothing actually gets done at your own home.)
Nite girls I'm exhausted.
Enjoy Turkeyday.
Much love ~
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renee,bc takes away from everything. Just when we think we are secure in our little worlds and think we have saved enough for the future, worked hard enough and done all the right stuff, then something like this happens and it tries to take everything away. I was planning on retiring at 62, but I will now have to work until I am 65. Not at all what I wanted to do, but this has changed my life in so many ways and it is not always better.
jen, have a safe trip and enjoy the visit with your relatives.
alicia, you are definitely not the ugly duckling. You are so beautiful and I know it is not easy to look at yourself in the mirror and see your own beauty, but it is there. I look at my self and I see a bald headed little old lady. I hate that, but that is not really who I am and I know that. BC is so hard on all us and our self esteem, it takes away all the things that we think makes us sexy and women. I think that is what is so hard for some to understand. It really is hard to think of ourselves as sexpots when we are bald, boobless and scared and in some cases dried up. But we all have inner beauty, that at least on this site is what the sisters can see.
ali, my heart goes out to you and the problems you are having. I certainly hope that you and your DH can get all the problems worked out. I know how hard it can be on other family members and that in turn makes it hard on you, but he also has to understand what is going on with you and it is not about him. My DH and I have had some of the intimacy problems. I am 60 and at this point in my life, especially since I have been diagnosed with bc, sex is just not really important to me and like you when we have tried, it hurts me so bad. He doesn't really understand that, even though I have tried to explain it. He finally did realize how much it hurt me and he has cooled his heals some. There is no pressure now and it is certainly a relief for me, but I don't know what would have happened, if I was your age. I could possibly have been in the same boat. I know you want to work it out and I hope you do, but he needs to realize that he may not get it as often as he would like, but when you do it should be very special.
michele, I hope you get that floor down. They finished the painting today and I did get some things put back together. It is good enough to have company and a big Thanksgiving party. I have places for everyone to sit, they may have to hold their plate, but they can put their drinks down.
pam, I almost forget to say Hello to you and hope you have a Happy Thanksgiving.
Have a great Thanksgiving, beautiful bald sisters. You know we are in this together and I love each and everyone of you.
Juannelle
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Ali~ Welcome to our little corner of the world
I glad you found us. We are certainly here for you and will be your sounding board for whatever life throws at you on this journey. I wish you the best with your DH. You seem like a beautiful strong woman and my heart goes out to you for what you are going thru in your marriage right now. It must be very hard to not have a solid support system. Have you looked into any cancer resource centers in your area? They can often offer counseling not only for you, but for your spouse as well. To you ladies doing the renovations~ Good luck! You have your hands full already, mabye it will be a good distraction for you.
Have a great Thanksgiving, Love and Hugs to all of you!
Jen
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Alicia, Sorry I forgot you had a double mastectomy. There are just so many breasts to think about on this site. Who can keep track of all that flesh. At least you are not lopsided...I felt like I was walking in circles for the first few months...
I know it is hard to feel sexy when we just don't feel or look like ourselves. My DH and I had a bit of a sex dry spell in my first cycle. At first I was nervous about my first treatment, then I wasn't in the mood, then exhaustion kicked in, as well as a yeast infection and a period that lasted about 11 days. And just when I thought it would happen I had an upset stomach and then treatment came again...What a month...Lucky for me my DH was cool with everything...Our first time was quite a disaster..I was bald, breast less, had a case of mange pubes and dry as a bone...I just sat on the toilet and cried and laughed at the same time..my DH was once again cool. He loves me and doesn't really care what I look like..But it sure is hard to feel like a sex kitten some days...I guess I should start looking for some sexy one breasted lingerie...that might help...ok enough about my sex life...
I hope you all have a great Thanksgiving..
Michele
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michele, love the new look.
Juannelle
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Michele - I also love the new "you" the pic is awesome... gotta love keeping it pink!!!
Happy Thanksgiving!
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Michele ~ your new avatar and post has me laughing ! LOVE IT
I love your sense of humor.
Happy Thanksgiving everyone !!!
HUGS
Alicia
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I also have a blond one...I told my DH that I was going to get a hot pink wig. He laughed at me, then said I didn't have the guts...OH, you don't say that to me. I pinky swore I was going to. The next time I have to pick him up at the airport I am planning to wear it...I hope he is traveling with his boss. That should teach him...WWHHhAAAA.
Have my #3 tomorrow...Not as nervous as the last two times..I was checking out my timing for my next chemo. I get it two days before my mom comes for xmas. Timing sucks for us going shopping. That will be my last good day of chemo before I have 4 days of no energy...She always comes and we do power shopping. I guess not this year.
Oh well enough about me. I hope everyone is well, and having a great Thanksgiving.
MIchele
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Happy Thanksgiving everyone, and those of you whom it is not Thanksgiving ~ wishing you a happy feel good day with family.
I am thankful to have you girls in my life.
Hugs !
Alicia
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hi girls, can I join you - I'm from the Uk and go on the support forum here too but you all seem so lovely and caring and positive and I wanted to say hello! I'm 44 and have 2 kids, 11 (son) and 16.5 (daughter) and know how hard all this is with kids and the effect it has on them, us and everybody.....we don't have Thanksgiving here but I think it sounds a lovely festival so Happy holidays to you all!! mary x
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Welcome Bongomummy, I have two kids almost the same ages. Son 15 and daughter 10. My two seem to be taking it all in stride...At least it seems that way. My daughter is sweet, she goes to a catholic school and each morning when they say their prayers for the day she has her class say a prayer for me..AH. At first she didn't want anyone to know, but then her teacher told me about the prayer and I was shocked. Now at the same time she won't be seen with me without my wig...I don't mind. She is a 10 year old girl. Hair is important I guess.
Any how I am glad you found our little, but getting bigger group.....We rock, and we are pretty hot looking as well.
Michele
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I was diagnosed last month with Stage 1 BC and had a lumpectomy 10/27 (no lymph nodes were involved). My onco score was a 17, which is classified as "low risk", but at the extreme high end of it. The Doc is leaving it up to me whether or not chemo will be part of my treatment. My survival odds are 95% with chemo and 89% without. The regimen would involve 4 cycles, one treatment each with Taxotere and Cytoxin with radiation and Tamoxifen when complete. If my score was in the intermediate or high risk range, my decision would be easy. But because it's where it is, I'm trying to decide if the side effects and risk associated with chemo are worth the small 6% benefit I would gain. Has anyone else been in this position or willing to give me some insight?
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Dear Beggy,
Only YOU can make that decision. If I were in your shoes and knowing what I know now about chemo, I'd probably skip it. The 6% benefit is not very far from the 2-5% risk of damage to body organs from chemo.
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HAPPY THANKSGIVING TO ALL! The day when the words, "I'll take the breast" is a good thing.
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