2013 Sister Warriors
Comments
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thanks keep the faith. I have worn wigs for a good part of my life for fun to change my looks. Both human and synthetic. Here are some sites I have bought hair from. Www.hairsisters.com and www.especiallyyours.com. If you live in a multicultural area or near a metro area you should be able to find wig stores. The wigs start at about $30.0 -
Hi all,
Wearing a wig is so easy! But....being bald is very difficult emotionally.
I was very happy with my wigs from paula young and twc. I have been wearing them daily. Tomorrow I plan to go to work for the first time without it. My hair is about an inch long now. I feel just as scared now as I did the first day I walked in with the wig on. But I am going to mousse it and spray it and just go in smiling.
Cancer teaches us strength for sure!!0 -
The hair loss didn't bother me too much - it's the length of time it's taking to grow back that is annoying me! I have always worn my hair short but I did have my hairdresser cut it even shorter before I started chemo.
Even though it was short, when my hair started coming out I it looked like I had a small animal on the shower floor every morning. I taped a piece of nylon screening over the shower drain so the hair wouldn't clog the drain and I kept the hand vac in the bathroom so I could clean up the counter and floor every morning. I also kept a lint roller handy. I didn't lose a lot during the day - I think I kept enough hair spray on it to almost glue it in place. But that didn't even last a week - my hair came out so fast, after five days there was so little left I had my husband shave my head. My bathroom was much cleaner after that!
I have to admit that I enjoy how quickly I can put myself together in the morning by just not having to wash and style my hair!0 -
Sgc728- Hi!
You have 4 kids too? My Dtr (the oldest - 25) does hair and photography. I still have 3 boys at home.
Best wishes to your dtr in nursing school!0 -
Thanks SC. I will ck those sites out. My DD and I visited one wig shop yesterday. I had to laugh when I put the wig cap on and saw what I will look like bald. I guess it's not the real thing yet; I'm sure it won't be that funny when I lose my hair! I did find one that I like, so that was encouraging.0
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Hi! I just found this board- I'm happy for me that it is here, but sorry that all of you are dealing with BC, too.
I'm almost 5 weeks post bilatral mastectomy and am anxious about my first appointment with the oncologist on Thursday. He should have my Oncotype Dx result, so I'm hoping to have a firm decision regarding chemo vs Tamoxifen vs both.
My gut says I'm going to need chemo. Any grade 3 ladies who did not have chemo recommended for them??
Thanks!0 -
Hi uds17! welcome. I am grade 3 and did not have to have chemo, but my idc was under a centimeter. I was treated at Mayo so feel pretty comfortable. That was one reason i chose to have mx. I had a fear of rads on my left side.. my mother had a horrible experience with rads on left side.. cancer never returned by it ruined the muscle in her arm and heart, she died of heart failure, but this was in 1988 so a long time ago and probably would not happen now, but it left such a lasting impression for me, i didnt want to do them unless I had too. If I had to.. I sure would, life is worth the living. my dcis was 4.3 centimeter but thankfully contained. good luck and keep us posted on results.0 -
I'm grade 3 and they are recommending chemo and rads. But, my tumor is 2.4 cm. so am probably stage II, and it's close to my chest wall. There are so many variables. I have not been staged yet. Will have LX on Friday. Good luck with your treatment and decisions!
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Thanks for your responses. I know each case is different, but it's really comforting to hear from other women who are facing similar issues.
ndgirl- I'm pleased to hear you're doing okay.
keepthefaith- Good luck for your surgery, staging, etc.
I'll keep you posted!0 -
uds17--welcome. Glad you found us. I'd say your Oncotype score will help clarify the benefit you'd receive from chemo. Given your stats, I'd think Tamoxifen is going to be part of the tx plan. Make sure your onc thoroughly explains what your options are, and that you understand the benefits and risks. How is your recovery going?
Best wishes for your LX on Friday, keepthefaith.0 -
Hello ladies,
Been a couple of weeks since I've been here. Got my oncotype dx results yesterday. It was 16. Better than my oncologist thought, so I will NOT be doing chemo. I will be on Tamoxifen for the next 10 years.
I am still scared. I will never be the same person, always going to feel like I am looking over my shoulder.
I go back next week to go over my hormone levels and begin the Tamoxifen. Just wondering for those of you in the same boat, how will they be checking for recurrence? Do we just have to wait for symptoms..........if so, I may end up becoming a hypocondriac. I'm going to see monsters everywhere!! Before all of this, I NEVER went to the doctor. I never needed to. Now I'm going to be freaking out if I get a cold........
ARGH..........I should be feeling so relieved and wonderful. I was yesterday when I got the news................what is wrong with me?
Kimberly0 -
@Keepthefaith- good luck on your Lx tomorrow. Will be in your pockets lending support and positive vibes for clear margins!0 -
Keep the faith,
Thoughts and prayers with you today.
Vivian
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Kimberly - I've been feeling like you all week. I had my surgery 2 weeks ago and Monday morning my BS called with my path report. All clear - no cancer in any of the specimens. Yay! I was really excited, especially since my Chemo and MRI results have been so good and all I have left is radiation then Arimidex. By Monday afternoon though, and the rest of the week, I have been in a funk. I don't know why. And now I'm thinking maybe I didn't do enough, is it still there somewhere? When will it come back? Should I have had a MX instead? Was treatment too easy for me? (I've had minimal SE's and know this hasn't been as hard on me as it has for other women.)
And my DH is confused at my mood because I did get very good news and I should be happy.
I was perkier during chemo than I am this week. Sigh.....0 -
I'm really stoked and grateful to see others going through this experience and I love you all! I was diagnosed with IDC and my surgery is Nov 11, 2013. The surgeon will take a sentinel lymph node from each armpit during surgery. Sister Warriors, what a name, I love it! I will visit you all often! I love you and I don't even know you!
For the newly diagnosed, waiting for MRI guided biopsies--
Fight for getting the MRI as soon as possible, because then you need to schedule surgery or treatments, and in my experience that takes some time! My insurance hedged about it and caused delays with the MRI appointment, but I kept pushing. I am grateful that I had the MRI biopsies because the serious cancer was pinpointed. So the zero- stage "not so bad as other cancers" DCIS (which is all over the place in my breasts) took a back seat to the 3mm IDC they found in two locations. I had the MRI guided biopsies twice, with 8 gage cannulas inserted into my breasts while lying face down, big heavy DD boobs hanging like large fruit. I'm not going to sugarcoat it. It was painful because for some reason they did not have lidocaine with buffer so the "numbing" injections were like liquid fire. Make sure you ask about the numbing injection! This top rated facility where I had the procedure ran out of the buffered type-- I overheard the nurses talking about how they were all out of the buffered lidocaine, I thought "Oh, great!" I am a RN and then knew what was coming next. Once you are numb it's not bad at all and for me the staff was very kind and as gantle as possible.
After the procedures the hematomas were big and painful even though the nurses were heroic in trying to minimize them right after the surgery. I was diligent with icing and this made a big difference. I walked a lot and two days later I went back to running and riding my horse, which I swear helped with the drainage and swelling of my entire trunk area, and alleviated pain.
PLEASE REPLY-- someone-- I will have bmx surgery soon and expanders, I am a RN and I know better, but I purposely avoid this topic and am trying really hard to assume my new identity of being one of the pink ribbon ladies. I'm thinking if I hang out with the Warriors I will pull up some courage to really wrap my mind around everything I am facing. I'm working really hard to actually do the work to educate myself on everything invoved and end up putting it off. Somebody give me a kick in the butt.
ANY RNs out there-- Right now I am worried that I won't be able to work as a RN after surgery and since I am a new RN (graduated 2012) with only temp work under my belt, I am scared and disappointed. It's not like I have a great job to go back to with supportive co workers. I visit allnurses.com and just not getting what I need for this situation.
HELP ...I love to ride, I can't stand the thought of not being able to ride for so long and then not being able to lift my saddle on to the horse.
Any encouragement/ experience/ words are much appreciated! XO0 -
Iloveponies,
Welcome. I had those MRI GUIDED BIOPSIES (3 at one time) in my L breast and yet they STILL DIDN'T FIND THE IDC * UNTIL* I chose BMX...THEN they found it!!!!
WE Knew I had IDC in R breast ( & EVEN THEN, only cuz they did an initial lumpectomy! The needle biopsy had ONLY showed severe atypical hyperplasia! ) * I had VERY DENSE breasts.
SO, THAT is why I chose BMX. I figured I might very well have bc in the L breast as well, even though it wasn't showing up on scans/biopsies.
Thank God I did have the BMX! CUZ SURE ENOUGH, THEY FOUND IDC IN BOTH SIDES!! I had Syncronous BC...rare for one's initial/first diagnosis. ..:(
But, BOTH SIDES STAGE 1/GRADE 1...
SO, *THIS* IS WHY I AM SORTA PARTIAL TO BMX......;)
Plus, I didn't want radiation...
V
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P.S.
You will be okay...glad you found us here. ..plenty of great support. One baby step at a time. ..:)
Vi
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I love ponies,
After several mammos, ultrasounds, biopsies and MRI, I chose bilat mx. I knew the IDC was in left breast but I went in initially for lump in my right. They found the IDC in the left right away and biopsied. Then after the MRI there were 2 suspicious areas in the right they biopsied. It ended up no cancer there but some, what they called, "very funky cellular changes". That did it!
After surgery, they ended up finding a secondary tumor of DCIS in my left that none of the mammos, ultrasounds or MRI found. Then my surgeon told me I made the right decision. With both breasts, I would have ended up with cancer again in a year, maybe two, if I had chosen lumpectomies. It had been a no brainer for me but I totally understand why some would veer toward lumpectomy.
LizzyinMI,
I was fine seeing myself after surgery. My MIL had a mx and I took care of her, so I knew what it would look like. I've been fine for weeks until now, all of a sudden. Been in a real funk this entire week. Didn't know why, after I got good news about my oncotype and no need for chemo. Was so happy.
I think it's the idea of now having to face more surgery for reconstruction. That, and I am having problems feeling comfortable in how I look in my clothes. I had very large breasts for my frame. Breasts were D's on a 4' 11" frame. So, all of my clothes are looking funny on me and with all the co pays and bills rolling in from all of this, I can't afford to go out and buy anything I would be more comfortable in. The fatigue seems to be hitting harder now too........felt better than this 2 wks after surgery. Maybe it's depression?
Then there are all the thoughts of, "They didn't do chemo", "There's still a chance it'll come back", if it comes back they said, "It will be wicked bad"..............my hubby keeps telling me not to worry about it, I shouldn't be worrying about it, don't think about the future!
How to you not live looking over your shoulder now? I keep thinking about my kids and it coming back. I still have very young ones at home...............been on anxiety stuff, maybe I need to have my dosage upped?
Sorry everyone, that I'm being so depressing...........I'm not usually like this.........and no where else to express all of this.
Thanks for letting me vent,
Kimberly0 -
Kim,
You have been real strong through all of this. It takes a lot to hear a dx make a decision and have surgery, then recover. It's ok to be tired. You got great news from your doctors. Enjoy it ! Concentrate and do what is in your hands to stay healthy. Eat well, exercise and do your follow ups when recommended. I understand the clothes issues, I was a very full DD but on a 5'9 frame also overweight. I've lost 38 lbs and have a few more to go. My clothes look like they belong to someone else. I have a sewing machine and could sew/alter but I have no energy or want to do it for me. Yet I've been sewing for my daughter. I've taken some of my bigger dresses and have been making easy summer shifts for her, I'm in Miami.
I've adopted biker shorts and capris (loose, I am going to take them in today) and V neck tshirts. I wear a very soft cotton bra or cami.(it coverers the wrinkles or folds of breast skin). I had NSS BMX with TE's. (imagine sharpei puppy looking skin) Until I can get them filled. I actually found two TY beanies, called beanie balls that I had bought for the kids when in the hospital. They are round. I actually put them inside the soft bra (stretchy over the head, no wire or elastics) and it looked like me in a tshirt. A great prosthetic for $5.00. but I couldn't go out that way. Not sure why I'm going flat until recon. ( It's got to be a mental thing, but I'm tired of figuring this out, I didn't order this pink ribbon)
I wish we were closer, I'd help you with altering your clothes. I can help you with making a pocket in a bra (can you thread a needle) and a very inexpensive prosthetic if you like.
Vivian0 -
Kimberly and Vivian -
Whatever you feel, it is OK. It is really OK.
No one can tell you what you are supposed to feel at any step in YOUR journey. A great deal of mental energy is needed to withstand the (almost daily) information, decisions, pain, treatments, drugs, body image changes, menopause symptoms, bills, etc. etc. etc. And now that most of that is over, it is natural to think of the future and to worry -- it makes you a good mom, a good wife, a good person.
I read somewhere that BC patients are often depressed at the end of treatment -- there is not really a rational reason for that. It is an emotional reason -- good news or the end of treatment begins an important transition from moving day-to-day and concentrating on surviving the next 24 hours (which actually concentrates your emotions in pursuit of a short term goal) to surviving the next 24 YEARS (which requires you to cast your hopes and dreams into the future). It takes a new kind of courage, and it is understandable if it takes you awhile to summon it. Don't be afraid if you need to get a little help with this transition -- if your treatment center has a cancer coach, that might be a good place to start. And these boards help too. And helping others helps. Vivian, your sewing for your daughter is a form of therapy, as is your offer of help. Kimberly, you are a caretaker too -- it is who you are.
I have confidence you will summon the courage, because you love and because you are loved. My son shared this quote with me: "Being loved by others makes you strong. Loving others gives you courage."
As always, brave sisters .... You can do it!
--Kim0 -
Thanks Kim, I love the quote.
And my offer stands to anyone who needs help sewing or making a garment , either to fit them now (no padding) or if they want (padding) . I have gone online and the prosthetic bras and camisoles are very expensive, and not all insurance will cover them. Mine won't. But it did say I had wig coverage up to 40 dollars. Here's the kick, there is one approved place to buy and the least expensive full wig started at 349. I can't use it on my Amazon purchased wigs.
I am also working on the hair I had cut. I have managed to make bangs, I started by sewing onto material (too many loose hairs) but I ended up using a glue gun. Im going to attatch velcro and see how it looks in a hat. Then going to work on doing neck hair and side burns.
So ladies save your hair, If you didn't you can use someone else's hair. If you have an interest in wearing hats and want some hair to peak through, I have washed it with no hair loss from bangs, I think this will work. The cost to you would be minimal. A glue gun, some material preferably close to your own hair color in color. and some velcro, needle and thread.
Vivian0 -
Vivian,
I can thread a needle and sew a hole closed. That's about the extent of my skills......I bet if I put my mind to it, I could do it. You could pm me with instructions, that would be wonderful, thank you so much!
Kim, you're right about the care giver thing........been taking care of everybody since I was a little girl. I have been so upbeat about all of this since the beginning too. Hiding my fears and I think that's why my hubby is a little baffled by my change of mood. It's just hit me like a ton of bricks, all of a sudden, when I'm told my odds now are great. It's almost like I don't believe them..........anyway, thank you both for the encouragement..........I go back to my onc this Wed. going to talk to him about the depression and see if there is a cancer coach or someone I could talk to about all of this.
I am so incredibly grateful to have this place to come..........my family is so wonderful but just can't understand and I don't want them to ever go through this so, that they could. I know they are dealing with this in a different way being on the other side. Might suggest hubby talk to someone too.
Love you all,
Kimberly0 -
Hi y'all
I Love Ponies - Welcome to our band of warriors! Sorry that your world has turned upside down, but we will walk with you...in your pocket
Breathe, stay focus on today and don't run ahead or over think...no need to rehearse something that may never happen. Discuss your concerns about work, riding, and whatever issues are stirring in your mind with your BC team. Time is your friend...go out and have a long ride today...make short video clips that make your heart smile and know yes know that after this battle you will again have all that and more! You are a brave strong warrior rah!
Kimberly - PTSD best describes this journey...glad you will be seeing a dr to help you express your fears and anxiety...we can only keep so much from family...we need to be real. A great book for hubby recommended on this site The Breast Cancer Husband...I marked what I wanted hubby to know, but could not find the words. Sending warming confident hugs.
Naiviv - wow, creative and upbeat inspiration:) happy day!
TeamKim - enjoy the coast this weekend! In your pocket during chemo land...you are a testimony if true spirit for your students a life lesson lived fiercely! We are so much more than our hair! Your sons quote
LizzyinMi - ah the let down after each step, but don't second guess yourself you've got a great BC team! You've come so far warrior! Breathe, celebrate today's victory. Focus in enjoying today! Take a 4-6 week no c zone vacation and get your groove back! The R&R will renew your body mind and spirit you will rock rads, but today focus on making your heart smile
Keepthefaith - you did it! Ooo who! Hoping that you have a great healing weekend with a good path report to come! So enjoyed our meet up warrior!
Uds17 - hope your mo appointment went well and you got answer to all your questions! Healing hugs...
My trunk LE is getting the squeeze...corset ugh! Working on the 3rd girl ha!
Beautiful fall day...a walk, some tai chi, and then a fun get together with family friends and neighbors out on the porch...:D
(((Hugs)))
Cindy0 -
Hi ladies,
YAY! Done with surgery. I took pain meds until my last round and then just took reg tylenol. It seems to be working fine so far. My BFF spent the night with me last night-she's such a blessing! Kids will be over later to ck on me. I had a horrible head-ache until late this morning, but other than that, feel pretty good; just tired. Dr told my kids that she only took two nodes, so I am thinking that is a good sign!:).
Will have my path report Tues and follow up with BS on Wed.
Thank you all for your support and well wishes. They helped me get through for sure.
One step behind me~
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Keepthefaith,
So glad you are feeling well, take it easy and rest as much as you can.
Vivian0 -
keepthefaith,
YAY!!!!!! Prayers for quick recovery and excellent path report!
RMlulu,
Thank you0 -
Yeah!!! Keepthefaith!!!! Remember to take it easy!0 -
Vivian -- LOVE your crafty hair tips -- I wouldn't have thought of hot glue! You should post on Pinterest when you get it perfected! I am off to Joann's to get some fabric for head wraps and will get the supplies you suggested so I am ready once I get buzzed to make some bangs and side burns. I had my long hair cut off a few months ago, but it is still about 6 inches long, so I should have some to work with. I don't sew, but I am handy with the glue gun. Today is day 10, and no shedding so far, but I figure it is going to start falling out any day now.... Maybe I will get to the end of the week if I'm lucky. A crafty project might be just the thing to help me over that difficult transition -- Thanks!!
Keepthefaith -- Glad your surgery went well. Take care of that arm, drink lots of fluids and rest. Be patient with your body -- some parts may take awhile to heal. Keep us posted on how you are doing and next steps from here. Be well!0 -
Team kim,
Get some rubberbands and bunch enough hair to do bangs in one and side burns in another, you can do a few of these. work with small batches of hair you can always add more. Work with a dot of hot glue at a time. Don't worry about length being even, leave it on the long side, you can trim later. 6 inches is more than enough. Have fun !!
Vivian0 -
Hi all!
I love ponies: Welcome! I'm slightly ahead of you in the process, and it's scary, but you will get through it. I have found these discussion boards extremely helpful- it's comforting connecting with people who are navigating the same pathways. I'm an MD (not a surgeon or oncologist) and make a concerted effort to allow myself to be a patient. I try not to pretend that I know it all and give myself permission to be sad and scared. It's hard for us because we are so used to tending to the needs of others. Hang in there!
RMlulu: Thanks for checking in. I met with MO on Thursday and am going to have chemo. I'm nervous about the process, but know it's the right thing to do. Port placement is scheduled for 10/25/13.
Heading to bed. Goodnight, sweet ladies!0
