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Can you suggest some good books that won't depress me?
on: August 13, 2007, 03:07:10 PM
The very first book I read was "Cancer Schmancer" by Fran Drescher. If it was possible to laugh your way to good health, this would be the prescription!
Fran had ovarian cancer, yes, but her fresh and optimistic and humorous and fearful and terrifying and hilarious way of wading through all the things she a) had no interest in; and b) was scared to death to learn about, is inspirational to anyone facing @#$%&* cancer.
Other favorites, "Susan Love's Breast Book", "Why I Wore Lipstick to My Mastectomy", "Breast Cancer for Dummies" and my personal favorite...The Bible. God always is a great read.
Reply #1 on: March 04, 2008, 10:09:59 PM
New favorite book - check out "Crazy Sexy Cancer" by Kris Carr. Their website is fab - it's www.crazysexycancer.com. She is one amazing gal!
Reply #2 on: April 15, 2008, 08:23:38 AM
I just finished reading "crazy sexy cancer tips" and loved it! She also has a great website www.crazysexycancer.com, and I think Kris Carr will be coming out w/ a new book this fall. I have also read "I'm too young to have breast cancer" by Beth Leibson-Hawkins. Not sure what type of cancer you have though. I have breast cancer and I have found that these two books have helped me a lot.
Kelly Brooke
Reply #3 on: April 15, 2008, 02:09:56 PM
Welcome to GIT, Kelly Brooke!
It's not a 'cancer" book, but one of my fave books of all time is "A Girl Named Zippy" by Haven Kimmel. Soooo funny, it makes you want to be best friends with her!
Please feel free to "blog" to your hearts content here on this site - we need a gal like you for inspiration - we get about 2,000 visitors a month here, but not everyone is willing to tell their story. Be our "it girl!"
Light & Peace & Healing Thoughts~
Mary Ann
Why am I sad now?
on: April 12, 2008, 09:33:46 PM
I am finding that I am getting sadder which is a bit scary (6 months now into treatment). It tends to be triggered when I see or hear something is related to cancer in any form. I am usually a very happy positive person and I find this feeling a bit odd for me and I don't quite know how to handle it.
Reply #1 on: April 13, 2008, 04:53:28 PM
I do think it will plateau, Suie, it did for me. Let me ask you, did you have a mastectomy? No one likes to tell the woman at the time, but three months post-mastectomy, a woman does "hit the wall", so to speak. It can be mild to moderate depression, and all of it is completely normal. It hit me like gangbusters - and I was so sure I was "ok" that I just couldn't believe it could be depression. I couldn't be depressed? That meant I didn't have it all together, and I am soooooooooo together! (ha-ha!) I wish I had known it might be headin' down the pike, but docs are hesitant to "warn" you. I don't get that. I also had heart surgery three months prior to my bi-lateral mastectomy, and lo and behold...patients tend to experience some depression 6 months after heart surgery. A double-whammy and I have no idea it's comin'!
I saw my doc, got an anti-depressant that helped me through the next few months and here I am, living to tell about it!
You can do it - don't be afraid to get some help and advice from your doc.
Let me know how you're doing - we're here to help, sister!
Hope Lives~
Mary Ann
Reply #2 on: April 14, 2008, 12:05:08 AM
Thanks, I will be seeing my doc on Thursday and will discuss it with her.
Reply #3 on: April 14, 2008, 12:11:04 AM
Sendin' love and healing thoughts your way - keep us posted!
MA
Any suggestions for celebrating that "one year" anniversary?
on: August 13, 2007, 05:02:46 PM
I took my kids to see the Lion King on Broadway and out for a frozen hot chocolate at Serendipity. Do something, though - have a massage, meet some girlfriends for lunch, have ice cream for breakfast, but do something to mark this important day. It is the day you began your Wellness Journey and you should celebrate it.
When am I going to feel like myself again?
on: August 13, 2007, 05:19:08 PM
That's a tough one because everyone is so different. I know that when I had my babies by c-section, they told me it would be twelve weeks before I felt like myself - they were right on the money. Chemo, mastectomy, lumpectomy, radiation, sentinel node biopsy, reconstructive surgery - there are so many variables wrapped up in each one of those things. Don't compare yourself to anyone else or how they're doing, what they're doing or why they're doing it. That, my friend, is a slippery slope that can cause you a whole lot of unnecessary stress. Your protocol is right for you and you will feel like yourself when your body is ready to.
Tamoxifen, Femara, Arimidex, AUGH!!!
on: September 22, 2008, 10:36:09 PM
I started taking femara a few months ago and felt okay until about six weeks in. Yukk - I felt bloated and just plain crummy. I thought maybe it was a combo of summer and salty food - no such luck. I felt so bloated that I was actually having a lot of discomfort - sort of the way I felt when it was early in my pregnancies (three of those, I remember them well!) - almost like I was bending over something.
Long story short, off the femara and I felt better within three days. Had to "unleash the dogs" and have a trans-abdominal and trans-vaginal ultrasound, to thankfully discover "NO CANCER!" - thank God! - but some fluid around my uterus. ( I KNEW I felt something reminiscent of those pregnancy days - yes, fluid, not baby, but close enough!)
My doc wants me on something, we'll make that determination next month when I visit, have my lupron and review the options.
So, has anyone else had a tamoxifen or femara or arimidex reaction? What did you do? Please share - I know I'm not the only one that wants to know!
I'm regretting not having a bi-lateral mastectomy? Is it too late?
on: August 13, 2007, 05:34:23 PM
It's never too late - for anything. Talk to your doc about this right away, so you can move on and not be bogged down with regrets.
Let's get "down & dirty" with nipple reconstruction!
on: July 21, 2008, 08:10:20 AM
Okay, chickies, ya' wanna talk nipples - let's talk nipples!
My nipples turned 3 on April 28th - I knew from the start that I would "do it all", from the mammogram to the last tattoo, and if you have the right doctors (and tattoo artist!) the result can be just beautiful!
Let me start by telling you that I documented my chemotherapy, bi-lateral mastectomy, reconstruction, (via tissue expanders and silicone implants) including nipple reconstruction and tattooing, with a photojournalist - and we are in the process of editing 12,000+ pictures into a journal to present to women upon diagnosis. Time Magazine published a photo essay two years ago with some of the photos. If you are interested in seeing some of this, be sure to watch the Strength Video, which Melissa Etheridge gave me her song, "I Run For Life" for use on our website. Get In Touch is a non-profit organization I started to, among other things, educate young girls on the importance of breast health and self-exam. Anyway......
My plastic surgeon did what he referred to as an origami-like, cut and fold and sew, nipple making. I wanted decent "projection" and I'm really pleased - he listened to me and did what I wanted. So after he did the fold and twist and sewing that forms the nipple, it's on to the next step. I opted to have a skin graft for the areola.
I had 3 c-sections, so he was able to go into that scar and remove a 4" x 2" strip of skin that he then cut two "areolas" out of. Then, in his words, he cut a "donut hole" right in the middle and then "popped it" right on over the nipple he had just made. But, before he "popped" it on, he first had to remove a layer of skin around the new nipple in the shape of an areola, in order to reveal a blood source for the graft to adhere to. Well, now that it's on, he made hundreds of teeny-tiny stitches to keep everything together.
Then, he took a bolus (not sure how that's spelled) a 2"x2" square of sponge with a nipple sized circle cut out in the center. He actually attached the bolus to each breast with three small stitches - now the newly grafted nipple could breathe, but is very well protected.
So.......I wake up in recovery, look down at my hospital gown that is "popping" out a good two inches on each breast...and I say to him, "Whoa. I wanted projection, but exactly how big are these nipples?"
I am a very good patient. I do (and don't do) exactly what the docs tell me to do (and not do!). He told me to do nothing for two weeks; that believe it or not, after all I'd already under-gone, this was the most delicate surgery and procedure, because it was a graft. He told me to lift nothing heavier than a can of soup. No purse, no vacuuming, no laundry, no driving - try to really take it slow. I did very well, the graft took beautifully and I healed quickly.
In fact, when he first removed the bolus' a week later, even with the still visible graft stitches and the not quite healed way they looked, I was laughing and crying giant tears of joy. I kept saying, "thank you, thank you, thank you" - and he began to cry and said, "this is why I do what I do - to help women, to help you, recognize yourself again."
The next day I was in the shower and, I know you'll understand this - without even looking down at them, just looking straight ahead in the shower, I could tell I had nipples! It was one of the most wonderful days of my life! I don't think I even realized how important this was to me, except that when any aspect of reconstruction is important to you, it's really important - and you want it done the right way.
So, later that morning, I called my darling doctor and told his receptionist to give him a message from me. I told her to tell him I said, "I love you, I love you, I love you, I love you!" Five minutes later he called me back and when I said hello, he said, " I love you, I love you, I love you, I love you!" I said, "Ian, this morning, when I was in the shower, without even looking down, I knew I had nipples!" And he said to me, "This morning when I was in the shower, without even looking down I knew you had nipples!" He was an amazing doctor!
For weeks I faithfully applied an antibiotic ointment and had absolutely no problems. I have friends who had nipple reconstruction and drove right away, carried laundry, moved their arms, and had infections, graft rejection and even had to have repeat surgery. I can't tell you how important it is to really do nothing until that graft takes.
It took several months for the redness to subside (I'm fair) and my doc said it was best to let everything settle down before making a tattooing decision. At first it looks like tattooing won't be necessary, but as the graft really takes, it fades and is even a different color from the new nipple, which, if you remember, was fashioned from your breast, so is that color. My doc had a permanent cosmetic artist do the tattooing, and he was wonderful. He uses 3 or 4 different colors of pinks and browns - areolas are not just one solid color, you know! He recommended a "touch-up" a few months later, but I just haven't made the time for that, although I am going to do it soon, since the color does fade a little. Topless sunbathing and chlorine also make the color fade slightly. For me - it was well worth how I felt and continue to feel. I felt like my breasts were two unfrosted cupcakes! I brought a Barbie doll with me to the hospital that day - my daughters and I cut Barbie's hair nice and short so she looked like me, and I showed her to my doc with her shirt off and said, "see this - I don't want to look like her anymore!" He took Barbie into the OR with us and actually drew nipples and areolas on her! He attached her to my IV pole so she was one of the first things I saw in the recovery room! Have fun and keep your sense of humor, no matter what!
When I finish the journal/book, all of this, in photographs and narrated by me and my docs, will be in a friendly format that will be a resource that I know I wish was available when I was wondering what in God's name "nipple reconstruction" was!
Okay, girlfriends, I hope this was helpful - I know it was wordy, but I wanted to be comprehensive and accurate.
I'm here if you have any questions - and just know that I love you all and pray for you every day - everything that I've done and continue to do is for you.
Hope Lives!!
Mary Ann
I'm afraid to touch my wife near her mastectomy scar. Am I a bad husband?
on: August 13, 2007, 05:58:11 PM
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don 't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don 't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
Re: Getting ready for the biopsy
Reply #3 on: March 15, 2008, 12:30:12 AM
Woo-hoo!!
No need for thanks, sister, I'm with you all the way - it's what kept and keeps me going through this ginormous wellness challenge - knowing I can take what I've been through and give you a hand, a shoulder, or a kind word to help you get through.
Put those ciggies down! You can do it! You know that if you keep smoking and ever do find yourself in a breast cancer 'pickle' that necessitates a mastectomy, you might not be able to have reconstruction because years of smoking can compromise your circulation and plenty of surgeons won't approve reconstructive surgery. Ouch. I tell teens that little tidbit and let me tell you...it hits home.
Promise me you'll stop in to this site and let us know not only how you are, but maybe someone else will be in your shoes and you can give them a kind word, too. Tell your friends to stop in, too - let's get these forums rolling!
Take care of yourself, darlin' - and remember......
Hope Lives!
Mary Ann
What is the best waterproof mascara - God knows I need it, fast!
on: August 13, 2007, 04:03:55 PM
Okay, this I can help you with. Maybelline Great Lash Waterproof Mascara is FAB. Don't forget to use the Puffs with aloe, too. I'm with you, sister.
Reply #1 on: October 17, 2007, 09:39:10 PM
In some ways, I feel absolutely no right to be part of this forum, because I do not have breast cancer. But, in another strange way...I feel a connection to all of you who are breast cancer patients and or survivors, because my one of my dearest friends in life....my biological sister is going on her three year "survivorship" if there's such a term :-) I can't say I walked in her shoes, but I can say that I followed those footprints and walked beside them, as often as I could. At the time, and still....I felt there were only three gifts that I knew I was capable of offering....an ear, an open heart and prayer. So ladies, if any of you are in need of any of those things, please let me know. I'll offer you the same. You are all in my prayers tonight. God Bless.
Reply #2 on: October 19, 2007, 09:17:42 PM
Hello, "heretohelp"! I'm Mary Ann, the founder of Get In Touch and I was so happy to see your post and your offer of support to anyone who might need it that I spoke with some of my GIT Board members today about you. We realized that the "Gals Forum" and the "Guys Forum" were not the only forums we needed to be able to provide. We are now working on setting up a "Girlfriends Forum" for all of the amazing friends of survivors that are looking for a little support of their own. Wow - thank you for getting in touch with us and inspiring us to help a special group - our girlfriends! God bless YOU!
Hope Lives!
Mary Ann
Reply #3 on: October 19, 2007, 09:33:59 PM
Amen to that Looking forward to contributing to the Girlfriends Forum. God knows, we can all use a "little help from our friends." Funny thing- I thought of calling my two sisters tonight , when "We are Family" came over the radio. It was a reminder of all the good times then, now and yet to come. But instead, I continued frosting my son's 5th birthday cake, thinking of all the reasons why I couldn't call at 8:45pm. Seeig the reply to my message Mary Ann, was a good reminder of why it's so important to just do it...instead of just think it, sometimes. We may never know what all of those tiny deposits of love do in deepest parts of our soul.
What the heck is a sentinel node biopsy?!
on: August 13, 2007, 02:59:31 PM
Don't freak out! A sentinel node biopsy is a really good thing - a little painful, but really good. I had mine along with my lumpectomy. When I got to the hospital, after being given a little something to keep me calm (gee, thanks!), they took me down to radiology and the tech injected my breast in the area of the lump. There were several injections and because they can't give you anything to numb the area or it would interfere with the results, it was pretty uncomfortable. However, my friends, this "pinchy" procedure helps determine if there is lymph node involvement and that means you will be able to start a protocol that best attacks your stage of cancer. Soooo.....getting back to the sentinel node biopsy.....they take you back to your room and you wait. Swell.
The injections are a dye that, through the miracle of science and a whole lot of things I don't understand, go right to the "sentinel" node. My surgeon referred to the "sentinel node" as the "first little soldier to stand up and take the shot" for the rest of the lymph nodes. Kind of a cute analogy in a not so cute time in your life. This node is then located and removed and biopsied. If it is benign, you are one lucky chick! If it is malignant, well, hey, you're still a lucky chick, in that you are now officially on the way to wellness. The first thing they do is take a few more lymph nodes around this "sentinel" node to get a clean margin. A clean margin is the area around the malignancy that is considered cancer free. Kind of a cute analogy in a not so cute time in your life. After they get this clean margin around that little soldier, you are off to the recovery room and all the ice chips you can chew!
The recovery from this sentinel node biopsy is a few weeks, I hate to tell you. Patience, my friend, patience. Augh.
Foods to avoid
on: December 06, 2007, 11:51:19 AM
Hello there,
I am just starting chemo, and not sure about what foods should be eaten and which to avoid.I would appreciate any input. I am on once every three weeks for 12 weeks of Adriamycin and Cytoxan, the last 12 weeks of Taxol will be once weekly. I started chemo the 3rd of Dec.
Thank you in advance,
Kathi Carnes
Reply #1 on: December 19, 2007, 02:51:48 PM
Hi Kathi!
I'm a little over three years out from my last chemo, but I also had the AC cocktail with the Taxol 'chaser!'
My doc advised me not to eat fresh fruits or vegetables (pesticides); sushi (just in case of parasites and other super-yucky reasons!); alcohol (not sure about why, but I didn't miss it at all and I decided to never have alcohol again in solidarity with a few of my friends who battle alcoholism and who went above and beyond the cal of 'friendship-duty' when it came to my cancer); no green tea or pomegranate juice or acai juice - all are wicked-high in anti-oxidants, and when you're on chemo, the last thing you want to do is de-"tox"! Sister, you need those toxins to kick cancer smack in the arse!
Thanks for posting - keep in touch and let us all 1/ know how you're doing; 2/ help you do it! We're with you, Girlfriend, and so is God.
Keeping you in prayer, Kathi.
Hope Lives~
Mary Ann
Reply #2 on: December 21, 2007, 10:39:27 AM
Thank you so much for the info regarding foods to avoid. Is there any printed information that you know of that I can read that talks about what foods to avoid?
Thanks for all the well wishes and prayers, I can really feel the love and support from all. I am going to be a survivor also.
Sincerely, Kathi
Reply #3 on: December 21, 2007, 12:06:28 PM
Give me some time, Survivor-Girl, I'll have to do some checking. My "personal library" includes a fabulous book called "Crazy Sexy Cancer Tips" by dynamo Kris Carr - chock-full of super info for anyone in the middle of a 'wellness challenge'.
I'm glad you feel the love and wishes coming your way - that's why this forum exists, my friend - for you.
Peace~
Mary Ann
Why is my hair growing in curly?
on: August 13, 2007, 04:36:35 PM
Okay, Shirley Temple, not to worry - the hair follicles relax the farther you get away from your "chemo days" and the hair will grow out straighter. It might even be a different color. I have friends who had jet black hair that grew back white. That's right, white. As your hair grows, it might weigh down the hair at the root and it will even feel straighter. The body is amazing and your hair may end up completely different than what you were used to. It's a whole new "normal", that's for sure.
I’m almost done with chemo and I’m afraid - why?
on: August 13, 2007, 04:31:33 PM
Chemo is your friend, that's why. It's been doing it's job and the reality that you'll be "on your own" is setting in. It's perfectly normal to be afraid. I was. Still am when I actually sit down and give it some thought. But you can't let that interfere with doing what needs to be done. Living. Take a deep breath. Move a muscle. Change a thought.
Is the chemo giving me hot flashes?
on: August 13, 2007, 04:11:21 PM
Yes, indeedy, sweetie! I found that they were really awful after I took a shower. I told a Gal-Pal and she told me that she turned the shower to cold for a few seconds before getting out. Whaddayaknow - it actually worked!
Neuropathy
on: October 08, 2008, 11:19:33 AM
Hi ladies,
I finished chemo in July and radiation last month. My diagnosis anniversary is right around the corner. Perfect timing - the same day as Relay for Life! Glad I'm here to celebrate and walk that survivor lap. But that brings me to my problem.
I still have terrible neuropathy in my feet. I've been on Gabapentin and my plastic surgeon recommended Sea Buckthorn oil. Nothing seems to work. I'm starting to feel a little better in the morning, but those first 50 steps in the morning can bring me to my knees. I feel like I'm in need of a walker sometimes! At times I feel pretty good, but then it comes right back. I’m hoping that it means it's finally going away! I'm tired of wearing ONLY sneakers, All day, all night! I miss my shoes!
Has anyone experienced neuropathy after taking Taxol? How long has it lasted? I know it's all individualized, but how long can I expect to be 43 and walk like I'm 93! and don't say until my next birthday when I'll be 44 and walking like 94! (At least I still have my sense of humor!)
Reply #1 on: October 08, 2008, 11:37:29 PM
Hey, Girl!
I think I spoke with you this afternoon! Congrats on your anniversary - it's like celebrating a brand spankin' new birthday!
As for neuropathy and taxol - gadzooks! - I nearly ripped the skin right off my feet trying to get at an itch that could never be scratched. Honestly, I'd kick off my sandals (summer chemo for me, too - 2004) and scrape my feet on doormats, sidewalks, you name it. Nothing worked, I just had to ride it out. It got better fast, though, once the chemo stopped. By fast I mean a couple of months - I guess that's not really "fast" - but it did get better.
The neuropathy I have in my hands...not so much. There are days I'm back to that "skin-ripping" feeling on my thumb on my left hand, for some reason. Who knows why that thumb on that hand could make me so crazy - but it can be pretty wicked. I try to keep it in perspective, though - I am just so happy to be alive I look at it as a pretty small price to pay.
Congratulations and let me know if you'll be joining us on Sunday - can't wait to meet you!
Hope Lives!
Mary Ann
Any suggestions for celebrating that “one year” anniversary?
on: August 13, 2007, 05:02:46 PM
I took my kids to see the Lion King on Broadway and out for a frozen hot chocolate at Serendipity. Do something, though - have a massage, meet some girlfriends for lunch, have ice cream for breakfast, but do something to mark this important day. It is the day you began your Wellness Journey and you should celebrate it.
What’s the deal with nipple reconstruction? How does that work?
on: August 13, 2007, 04:52:33 PM
My nipple reconstruction was really successful and I'm really, really happy with it. My plastic surgeon explained it to me like this: It's kind of like origami with the skin on your breast. They actually cut the skin in a star-like pattern and sort of twist and fold and stitich it all into a nipple. It sounds like it hurts, I know, but, this is one moment in time that you will be grateful that the nerve endings were removed when you had your mastectomy. You won't feel a thing. I also had a skin graft from my abdomen (I had three c-sections, so I had a scar to work with) and they removed a strip of skin that was then cut into a circle shape with a hole in it. My surgeon then "popped" that little "donut" onto the newly formed nipple, beautifully stitched it in place, and voila - nipple reconstruction! A couple of weeks without carrying heavy handbags and groceries, but, let me tell you, they look fabulous. Really. I had them tattooed a few months later, just to deepen the color and make them even prettier! My nipple reconstruction was really successful and I'm really, really happy with it. My plastic surgeon explained it to me like this: It's kind of like origami with the skin on your breast. They actually cut the skin in a star-like pattern and sort of twist and fold and stitich it all into a nipple. It sounds like it hurts, I know, but, this is one moment in time that you will be grateful that the nerve endings were removed when you had your mastectomy. You won't feel a thing. I also had a skin graft from my abdomen (I had three c-sections, so I had a scar to work with) and they removed a strip of skin that was then cut into a circle shape with a hole in it. My surgeon then "popped" that little "donut" onto the newly formed nipple, beautifully stitched it in place, and voila - nipple reconstruction! A couple of weeks without carrying heavy handbags and groceries, but, let me tell you, they look fabulous. Really. I had them tattooed a few months later, just to deepen the color and make them even prettier!
I finished chemotherapy six months ago, why am I still tired?
on: August 13, 2007, 04:42:38 PM
Your body has obviously been through a lot and is still recovering. Listen to your body and try to rest as often as you can. It's normal to be tired. For more than six months now you have had emotional, physical and psychological trauma. It's easy for me to tell you to rest, but the fact that it's normal to be tired should hopefully give you some peace of mind. Now, go put your feet up, will you?!
When am I going to feel like myself again?
on: August 13, 2007, 05:19:08 PM
That's a tough one because everyone is so different. I know that when I had my babies by c-section, they told me it would be twelve weeks before I felt like myself - they were right on the money. Chemo, mastectomy, lumpectomy, radiation, sentinel node biopsy, reconstructive surgery - there are so many variables wrapped up in each one of those things. Don't compare yourself to anyone else or how they're doing, what they're doing or why they're doing it. That, my friend, is a slippery slope that can cause you a whole lot of unnecessary stress. Your protocol is right for you and you will feel like yourself when your body is ready to.
Every ache or pain sets me into a fear of recurrence frenzy. Help.
on: August 13, 2007, 05:12:58 PM
Me, too, sister. I think this is our new normal and we just need to be smart about the aches and pains. I had a nosebleed that absolutely freaked me out. It turns out I had a cold, plain and simple. But, we Survivor Girls go from 0-60 in two seconds flat when it comes to that "R" word. I look at Elizabeth Edwards and think, wow, that's grace, that's faith, that's me. Find a friend that doesn't mind your freak-outs and freak out - sometimes that's all you can do.
Four Years and counting…!!!
on: February 26, 2008, 11:28:25 PM
Okay, gals, I just passed my four year mark since my diagnosis. Honestly, sometimes it feels like it was twenty years ago....and sometimes it feels like it happened just yesterday. Every day felt like it was a week long, and every night, well....yikes - they were endless.
That's when I had to freeze my Visa in a glass of water. Why?! Well, many years ago my girl Oprah did a show on "curbing your spending" and, okay, okay, it seemed like a good idea at the time, and I had to do SOMETHING to stop those 3am Home Shopping Network purchases! (By the time the darn thing thaws out, you're wide awake and realize you don't really need a set of baking pans that can make a life-size basketball cake, or 28 more Rodney Yee yoga dvd's.)
So, here I am, further away from my cancer than ever before. My oldest daughter turned 17 today and I am alive to celebrate with her. Yep, it's a great day!
Hope Lives~
Mary Ann
Am I really qualified to talk to a newly diagnosed woman?
on: August 13, 2007, 05:24:34 PM
Hey, baby, you're in the 2-5 year spot, so you're darn tootin' you're qualified! Lend a sister an emotional hand and a menopausal shoulder to cry on. We pave the way for those that come after us. Do it!
Reply #1 on: October 06, 2007, 09:50:32 AM
I have a friend who has a daughter that was diagnosed with breast cancer last February. At her Mom's urging, she called me late one Saturday evening and cried and cursed and cried and cursed. She was angry and doubtful. I listened and answered all of her questions and told her how important it was to get a second opinion. I told her to go ahead and call my breast surgeon, right now, don't wait until Monday morning. Well, long story short, she called the service, my surgeon called her back within a minute and did more for this woman than she will ever, ever know. When she called me back after talking to my surgeon, she was a different person. Calmer and curse-free!! She's a great gal, a survivor, and I knew that her "fire" would be something she could channel into wellness. When she thanked me over and over for spending so much time on the phone with her on a Saturday night, I told her - confidently - that she would be doing exactly the same thing one day. She laughed and dare I say, did not believe me! Well, she's her mother's daughter, and she is doing exactly what I told her she'd be doing...mentoring newly diagnosed gals, driving them to chemo, picking up their visiting family members from the airport, you name it.
So, are you "qualified" - are you kidding?! You're a survivor, girlfriend - pass it on!
I just want to pretend it never happened. Is that so wrong?
on: August 13, 2007, 05:26:38 PM
You need to do what you need to do. Period. If pretending works for you at this moment in time, I support you.
Reply #1 on: October 06, 2007, 09:26:31 AM
You need to do what you need to do. Period. If pretending works for you at this moment in time, I support you.
I’m regretting not having a bi-lateral mastectomy? Is it too late?
on: August 13, 2007, 05:34:23 PM
It's never too late - for anything. Talk to your doc about this right away, so you can move on and not be bogged down with regrets.
What’s so magical about the “5 Years Out” Anniversary?
on: August 13, 2007, 05:32:11 PM
You know, I'm not really sure, but I do know that most recurrences take place within that 5 years, so it's a medical milestone that unfortunately, isn't a promise. The further you get away from your "Wellness Challenge", the better it is - physically, emotionally, psychologically. That's the magic - it's all what you want it to be.
Let’s get “down & dirty” on nipple reconstruction?
on: July 21, 2008, 08:10:20 AM
Okay, chickies, ya' wanna talk nipples - let's talk nipples!
My nipples turned 3 on April 28th - I knew from the start that I would "do it all", from the mammogram to the last tattoo, and if you have the right doctors (and tattoo artist!) the result can be just beautiful!
Let me start by telling you that I documented my chemotherapy, bi-lateral mastectomy, reconstruction, (via tissue expanders and silicone implants) including nipple reconstruction and tattooing, with a photojournalist - and we are in the process of editing 12,000+ pictures into a journal to present to women upon diagnosis. Time Magazine published a photo essay two years ago with some of the photos. If you are interested in seeing some of this, be sure to watch the Strength Video, which Melissa Etheridge gave me her song, "I Run For Life" for use on our website. Get In Touch is a non-profit organization I started to, among other things, educate young girls on the importance of breast health and self-exam. Anyway......
My plastic surgeon did what he referred to as an origami-like, cut and fold and sew, nipple making. I wanted decent "projection" and I'm really pleased - he listened to me and did what I wanted. So after he did the fold and twist and sewing that forms the nipple, it's on to the next step. I opted to have a skin graft for the areola.
I had 3 c-sections, so he was able to go into that scar and remove a 4" x 2" strip of skin that he then cut two "areolas" out of. Then, in his words, he cut a "donut hole" right in the middle and then "popped it" right on over the nipple he had just made. But, before he "popped" it on, he first had to remove a layer of skin around the new nipple in the shape of an areola, in order to reveal a blood source for the graft to adhere to. Well, now that it's on, he made hundreds of teeny-tiny stitches to keep everything together.
Then, he took a bolus (not sure how that's spelled) a 2"x2" square of sponge with a nipple sized circle cut out in the center. He actually attached the bolus to each breast with three small stitches - now the newly grafted nipple could breathe, but is very well protected.
So.......I wake up in recovery, look down at my hospital gown that is "popping" out a good two inches on each breast...and I say to him, "Whoa. I wanted projection, but exactly how big are these nipples?"
I am a very good patient. I do (and don't do) exactly what the docs tell me to do (and not do!). He told me to do nothing for two weeks; that believe it or not, after all I'd already under-gone, this was the most delicate surgery and procedure, because it was a graft. He told me to lift nothing heavier than a can of soup. No purse, no vacuuming, no laundry, no driving - try to really take it slow. I did very well, the graft took beautifully and I healed quickly.
In fact, when he first removed the bolus' a week later, even with the still visible graft stitches and the not quite healed way they looked, I was laughing and crying giant tears of joy. I kept saying, "thank you, thank you, thank you" - and he began to cry and said, "this is why I do what I do - to help women, to help you, recognize yourself again."
The next day I was in the shower and, I know you'll understand this - without even looking down at them, just looking straight ahead in the shower, I could tell I had nipples! It was one of the most wonderful days of my life! I don't think I even realized how important this was to me, except that when any aspect of reconstruction is important to you, it's really important - and you want it done the right way.
So, later that morning, I called my darling doctor and told his receptionist to give him a message from me. I told her to tell him I said, "I love you, I love you, I love you, I love you!" Five minutes later he called me back and when I said hello, he said, " I love you, I love you, I love you, I love you!" I said, "Ian, this morning, when I was in the shower, without even looking down, I knew I had nipples!" And he said to me, "This morning when I was in the shower, without even looking down I knew you had nipples!" He was an amazing doctor!
For weeks I faithfully applied an antibiotic ointment and had absolutely no problems. I have friends who had nipple reconstruction and drove right away, carried laundry, moved their arms, and had infections, graft rejection and even had to have repeat surgery. I can't tell you how important it is to really do nothing until that graft takes.
It took several months for the redness to subside (I'm fair) and my doc said it was best to let everything settle down before making a tattooing decision. At first it looks like tattooing won't be necessary, but as the graft really takes, it fades and is even a different color from the new nipple, which, if you remember, was fashioned from your breast, so is that color. My doc had a permanent cosmetic artist do the tattooing, and he was wonderful. He uses 3 or 4 different colors of pinks and browns - areolas are not just one solid color, you know! He recommended a "touch-up" a few months later, but I just haven't made the time for that, although I am going to do it soon, since the color does fade a little. Topless sunbathing and chlorine also make the color fade slightly. For me - it was well worth how I felt and continue to feel. I felt like my breasts were two unfrosted cupcakes! I brought a Barbie doll with me to the hospital that day - my daughters and I cut Barbie's hair nice and short so she looked like me, and I showed her to my doc with her shirt off and said, "see this - I don't want to look like her anymore!" He took Barbie into the OR with us and actually drew nipples and areolas on her! He attached her to my IV pole so she was one of the first things I saw in the recovery room! Have fun and keep your sense of humor, no matter what!
When I finish the journal/book, all of this, in photographs and narrated by me and my docs, will be in a friendly format that will be a resource that I know I wish was available when I was wondering what in God's name "nipple reconstruction" was!
Okay, girlfriends, I hope this was helpful - I know it was wordy, but I wanted to be comprehensive and accurate.
I'm here if you have any questions - and just know that I love you all and pray for you every day - everything that I've done and continue to do is for you.
Hope Lives!!
Mary Ann
A Dietician’s Cancer Story
on: October 27, 2007, 08:55:03 PM
Hi Ladies,
When my sister was diagnosed with Breast Cancer, three years ago, a very kind and supportive friend bought all of the women in my immediate family, copies of the book "A Dietician's Cancer Story," authored by Cancer and Nutrition Specialist- Diana Dyer. She's a three time cancer survivor. On her website- found at http://www.cancerrd.com/
Not only is her story inspiring, but she gives clear, concise and empowering advice; from coping techniques to recipes. I personally enjoy the recipes. They are quick, easy and full of life giving energy. She even offers shopping lists to make life a little easier.
Check it out! You can find most of the info that's in the book, right on Diana's website.
God Bless.
I’m afraid to touch my wife near her mastectomy scar. Am I a bad husband?
on: August 13, 2007, 05:58:11 PM
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
What exactly is a mastectomy?
on: August 13, 2007, 05:52:29 PM
A mastectomy is when they remove all of the breast tissue, including the nipple. The nipple is the main duct and in most cases it's important to remove it. Breast tissue goes right up to the collar bone and under the armpits. There are milk ducts in breast tissue and a mastectomy removes as much as possible.
How can I fix this for her?
on: August 13, 2007, 05:44:19 PM
You know, it doesn't matter if you're talking about your wife, your girlfriend, your mother, your sister or your daughter; you can't fix it, so don 't, I repeat, don't beat yourself up about it. Just listen. Let her cry. Let her freak out completely. Hug her. Tell her she can do it and that you'll be there to remind her. Don't be afraid to cry with her. If you're afraid to show her that you're afraid, she may think you're not. It's at least a million miles from the head to the heart, so don't worry that she might be a tad irrational. She is scared and she can be a tad anything.
Getting ready for the biopsy.
on: February 24, 2008, 02:06:29 AM
Hello all
My name is Jenn and im waiting and waiting for the biopsy. Can't sleep, can't eat just trying to get by being normal. I dont know what will happen i just know im scared like i have never been in my life. the problem is, everyone keeps telling me to pray and keep positive. Somewhere along the last 20 years i have lost my faith so im out of luck i think. But im still hoping that i have a place in the big guys heart. I have no right to be on this site, other than i dont know where to turn. I am having a bilateral ultrasound guided biopsy on March 7th. any comments would be appreciated
thanks
Jennifer
Reply #1 on: February 26, 2008, 11:12:17 PM
No, no, no, Jennifer - this site belongs to you, was created specifically with you in mind. YOU are the reason why we exist.
I know you can't sleep and can't eat and I'm not even going to tell you to try. It's scary and there's no way around that until you have those results in your hand. And then, no matter what the results are, I promise you will have peace.
Praying and being positive are two really good things to do. However...if you want to scream and cry and talk about every negative scenario running through that pretty little head of yours, well, sister, this is the place to do it.
Lost your faith? Hmmm...not you, wondering if the "big guy" still has room in His heart for you. Sounds like faith to me, girlfriend. God IS with you and so am I. We all are. That's why we come to this site, why we "get in touch" with other gals that we know need a little TLC, a little info and yes, an occasional reality check.
Okay. Bi-lateral guided biopsy. Not invasive, so that's good. Bringing a friend? Definitely a good idea. My pal Nancy is a little lady, but her shoulders were wicked-big when I needed to be held up - she was awesome. She came to my appointments armed with a big, fat notepad and nerves of steel. Pick a friend that can be neutral and level-headed. Don't worry if a family member can't be with you - sometimes they're too close for comfort, if you know what I mean.
I'll be praying for you - we all will. Please come back to the forum as often as you like - stay "in touch".
Hope Lives~
Mary Ann
Reply #2 on: March 11, 2008, 11:46:26 PM
Hi Maryann
I just got the news and I am cancer free. I first and foremost want to thank you for your reply! It meant so much knowing that you could understand my perspective. I feel lucky that I dodged a bullet, so now changes have to be made. Stop smoking, uggggghhhhh! cut down on all the fun things like caffeine and wine. But I need to embrace this second chance I have been given, so many others have a much harder road. I hope i can still be a part of the discussions. Biopsy sucked big time and I hope i Never have to do it again but have been warned that both boobs are full of fibroids, so mammograms will be dicey here on out. This website has been a blessing and you are doing wonderful things!!
Love to all
Jennifer
on: August 13, 2007, 03:07:10 PM
The very first book I read was "Cancer Schmancer" by Fran Drescher. If it was possible to laugh your way to good health, this would be the prescription!
Fran had ovarian cancer, yes, but her fresh and optimistic and humorous and fearful and terrifying and hilarious way of wading through all the things she a) had no interest in; and b) was scared to death to learn about, is inspirational to anyone facing @#$%&* cancer.
Other favorites, "Susan Love's Breast Book", "Why I Wore Lipstick to My Mastectomy", "Breast Cancer for Dummies" and my personal favorite...The Bible. God always is a great read.
Reply #1 on: March 04, 2008, 10:09:59 PM
New favorite book - check out "Crazy Sexy Cancer" by Kris Carr. Their website is fab - it's www.crazysexycancer.com. She is one amazing gal!
Reply #2 on: April 15, 2008, 08:23:38 AM
I just finished reading "crazy sexy cancer tips" and loved it! She also has a great website www.crazysexycancer.com, and I think Kris Carr will be coming out w/ a new book this fall. I have also read "I'm too young to have breast cancer" by Beth Leibson-Hawkins. Not sure what type of cancer you have though. I have breast cancer and I have found that these two books have helped me a lot.
Kelly Brooke
Reply #3 on: April 15, 2008, 02:09:56 PM
Welcome to GIT, Kelly Brooke!
It's not a 'cancer" book, but one of my fave books of all time is "A Girl Named Zippy" by Haven Kimmel. Soooo funny, it makes you want to be best friends with her!
Please feel free to "blog" to your hearts content here on this site - we need a gal like you for inspiration - we get about 2,000 visitors a month here, but not everyone is willing to tell their story. Be our "it girl!"
Light & Peace & Healing Thoughts~
Mary Ann
Why am I sad now?
on: April 12, 2008, 09:33:46 PM
I am finding that I am getting sadder which is a bit scary (6 months now into treatment). It tends to be triggered when I see or hear something is related to cancer in any form. I am usually a very happy positive person and I find this feeling a bit odd for me and I don't quite know how to handle it.
Reply #1 on: April 13, 2008, 04:53:28 PM
I do think it will plateau, Suie, it did for me. Let me ask you, did you have a mastectomy? No one likes to tell the woman at the time, but three months post-mastectomy, a woman does "hit the wall", so to speak. It can be mild to moderate depression, and all of it is completely normal. It hit me like gangbusters - and I was so sure I was "ok" that I just couldn't believe it could be depression. I couldn't be depressed? That meant I didn't have it all together, and I am soooooooooo together! (ha-ha!) I wish I had known it might be headin' down the pike, but docs are hesitant to "warn" you. I don't get that. I also had heart surgery three months prior to my bi-lateral mastectomy, and lo and behold...patients tend to experience some depression 6 months after heart surgery. A double-whammy and I have no idea it's comin'!
I saw my doc, got an anti-depressant that helped me through the next few months and here I am, living to tell about it!
You can do it - don't be afraid to get some help and advice from your doc.
Let me know how you're doing - we're here to help, sister!
Hope Lives~
Mary Ann
Reply #2 on: April 14, 2008, 12:05:08 AM
Thanks, I will be seeing my doc on Thursday and will discuss it with her.
Reply #3 on: April 14, 2008, 12:11:04 AM
Sendin' love and healing thoughts your way - keep us posted!
MA
Any suggestions for celebrating that "one year" anniversary?
on: August 13, 2007, 05:02:46 PM
I took my kids to see the Lion King on Broadway and out for a frozen hot chocolate at Serendipity. Do something, though - have a massage, meet some girlfriends for lunch, have ice cream for breakfast, but do something to mark this important day. It is the day you began your Wellness Journey and you should celebrate it.
When am I going to feel like myself again?
on: August 13, 2007, 05:19:08 PM
That's a tough one because everyone is so different. I know that when I had my babies by c-section, they told me it would be twelve weeks before I felt like myself - they were right on the money. Chemo, mastectomy, lumpectomy, radiation, sentinel node biopsy, reconstructive surgery - there are so many variables wrapped up in each one of those things. Don't compare yourself to anyone else or how they're doing, what they're doing or why they're doing it. That, my friend, is a slippery slope that can cause you a whole lot of unnecessary stress. Your protocol is right for you and you will feel like yourself when your body is ready to.
Tamoxifen, Femara, Arimidex, AUGH!!!
on: September 22, 2008, 10:36:09 PM
I started taking femara a few months ago and felt okay until about six weeks in. Yukk - I felt bloated and just plain crummy. I thought maybe it was a combo of summer and salty food - no such luck. I felt so bloated that I was actually having a lot of discomfort - sort of the way I felt when it was early in my pregnancies (three of those, I remember them well!) - almost like I was bending over something.
Long story short, off the femara and I felt better within three days. Had to "unleash the dogs" and have a trans-abdominal and trans-vaginal ultrasound, to thankfully discover "NO CANCER!" - thank God! - but some fluid around my uterus. ( I KNEW I felt something reminiscent of those pregnancy days - yes, fluid, not baby, but close enough!)
My doc wants me on something, we'll make that determination next month when I visit, have my lupron and review the options.
So, has anyone else had a tamoxifen or femara or arimidex reaction? What did you do? Please share - I know I'm not the only one that wants to know!
I'm regretting not having a bi-lateral mastectomy? Is it too late?
on: August 13, 2007, 05:34:23 PM
It's never too late - for anything. Talk to your doc about this right away, so you can move on and not be bogged down with regrets.
Let's get "down & dirty" with nipple reconstruction!
on: July 21, 2008, 08:10:20 AM
Okay, chickies, ya' wanna talk nipples - let's talk nipples!
My nipples turned 3 on April 28th - I knew from the start that I would "do it all", from the mammogram to the last tattoo, and if you have the right doctors (and tattoo artist!) the result can be just beautiful!
Let me start by telling you that I documented my chemotherapy, bi-lateral mastectomy, reconstruction, (via tissue expanders and silicone implants) including nipple reconstruction and tattooing, with a photojournalist - and we are in the process of editing 12,000+ pictures into a journal to present to women upon diagnosis. Time Magazine published a photo essay two years ago with some of the photos. If you are interested in seeing some of this, be sure to watch the Strength Video, which Melissa Etheridge gave me her song, "I Run For Life" for use on our website. Get In Touch is a non-profit organization I started to, among other things, educate young girls on the importance of breast health and self-exam. Anyway......
My plastic surgeon did what he referred to as an origami-like, cut and fold and sew, nipple making. I wanted decent "projection" and I'm really pleased - he listened to me and did what I wanted. So after he did the fold and twist and sewing that forms the nipple, it's on to the next step. I opted to have a skin graft for the areola.
I had 3 c-sections, so he was able to go into that scar and remove a 4" x 2" strip of skin that he then cut two "areolas" out of. Then, in his words, he cut a "donut hole" right in the middle and then "popped it" right on over the nipple he had just made. But, before he "popped" it on, he first had to remove a layer of skin around the new nipple in the shape of an areola, in order to reveal a blood source for the graft to adhere to. Well, now that it's on, he made hundreds of teeny-tiny stitches to keep everything together.
Then, he took a bolus (not sure how that's spelled) a 2"x2" square of sponge with a nipple sized circle cut out in the center. He actually attached the bolus to each breast with three small stitches - now the newly grafted nipple could breathe, but is very well protected.
So.......I wake up in recovery, look down at my hospital gown that is "popping" out a good two inches on each breast...and I say to him, "Whoa. I wanted projection, but exactly how big are these nipples?"
I am a very good patient. I do (and don't do) exactly what the docs tell me to do (and not do!). He told me to do nothing for two weeks; that believe it or not, after all I'd already under-gone, this was the most delicate surgery and procedure, because it was a graft. He told me to lift nothing heavier than a can of soup. No purse, no vacuuming, no laundry, no driving - try to really take it slow. I did very well, the graft took beautifully and I healed quickly.
In fact, when he first removed the bolus' a week later, even with the still visible graft stitches and the not quite healed way they looked, I was laughing and crying giant tears of joy. I kept saying, "thank you, thank you, thank you" - and he began to cry and said, "this is why I do what I do - to help women, to help you, recognize yourself again."
The next day I was in the shower and, I know you'll understand this - without even looking down at them, just looking straight ahead in the shower, I could tell I had nipples! It was one of the most wonderful days of my life! I don't think I even realized how important this was to me, except that when any aspect of reconstruction is important to you, it's really important - and you want it done the right way.
So, later that morning, I called my darling doctor and told his receptionist to give him a message from me. I told her to tell him I said, "I love you, I love you, I love you, I love you!" Five minutes later he called me back and when I said hello, he said, " I love you, I love you, I love you, I love you!" I said, "Ian, this morning, when I was in the shower, without even looking down, I knew I had nipples!" And he said to me, "This morning when I was in the shower, without even looking down I knew you had nipples!" He was an amazing doctor!
For weeks I faithfully applied an antibiotic ointment and had absolutely no problems. I have friends who had nipple reconstruction and drove right away, carried laundry, moved their arms, and had infections, graft rejection and even had to have repeat surgery. I can't tell you how important it is to really do nothing until that graft takes.
It took several months for the redness to subside (I'm fair) and my doc said it was best to let everything settle down before making a tattooing decision. At first it looks like tattooing won't be necessary, but as the graft really takes, it fades and is even a different color from the new nipple, which, if you remember, was fashioned from your breast, so is that color. My doc had a permanent cosmetic artist do the tattooing, and he was wonderful. He uses 3 or 4 different colors of pinks and browns - areolas are not just one solid color, you know! He recommended a "touch-up" a few months later, but I just haven't made the time for that, although I am going to do it soon, since the color does fade a little. Topless sunbathing and chlorine also make the color fade slightly. For me - it was well worth how I felt and continue to feel. I felt like my breasts were two unfrosted cupcakes! I brought a Barbie doll with me to the hospital that day - my daughters and I cut Barbie's hair nice and short so she looked like me, and I showed her to my doc with her shirt off and said, "see this - I don't want to look like her anymore!" He took Barbie into the OR with us and actually drew nipples and areolas on her! He attached her to my IV pole so she was one of the first things I saw in the recovery room! Have fun and keep your sense of humor, no matter what!
When I finish the journal/book, all of this, in photographs and narrated by me and my docs, will be in a friendly format that will be a resource that I know I wish was available when I was wondering what in God's name "nipple reconstruction" was!
Okay, girlfriends, I hope this was helpful - I know it was wordy, but I wanted to be comprehensive and accurate.
I'm here if you have any questions - and just know that I love you all and pray for you every day - everything that I've done and continue to do is for you.
Hope Lives!!
Mary Ann
I'm afraid to touch my wife near her mastectomy scar. Am I a bad husband?
on: August 13, 2007, 05:58:11 PM
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don 't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don 't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
Re: Getting ready for the biopsy
Reply #3 on: March 15, 2008, 12:30:12 AM
Woo-hoo!!
No need for thanks, sister, I'm with you all the way - it's what kept and keeps me going through this ginormous wellness challenge - knowing I can take what I've been through and give you a hand, a shoulder, or a kind word to help you get through.
Put those ciggies down! You can do it! You know that if you keep smoking and ever do find yourself in a breast cancer 'pickle' that necessitates a mastectomy, you might not be able to have reconstruction because years of smoking can compromise your circulation and plenty of surgeons won't approve reconstructive surgery. Ouch. I tell teens that little tidbit and let me tell you...it hits home.
Promise me you'll stop in to this site and let us know not only how you are, but maybe someone else will be in your shoes and you can give them a kind word, too. Tell your friends to stop in, too - let's get these forums rolling!
Take care of yourself, darlin' - and remember......
Hope Lives!
Mary Ann
What is the best waterproof mascara - God knows I need it, fast!
on: August 13, 2007, 04:03:55 PM
Okay, this I can help you with. Maybelline Great Lash Waterproof Mascara is FAB. Don't forget to use the Puffs with aloe, too. I'm with you, sister.
Reply #1 on: October 17, 2007, 09:39:10 PM
In some ways, I feel absolutely no right to be part of this forum, because I do not have breast cancer. But, in another strange way...I feel a connection to all of you who are breast cancer patients and or survivors, because my one of my dearest friends in life....my biological sister is going on her three year "survivorship" if there's such a term :-) I can't say I walked in her shoes, but I can say that I followed those footprints and walked beside them, as often as I could. At the time, and still....I felt there were only three gifts that I knew I was capable of offering....an ear, an open heart and prayer. So ladies, if any of you are in need of any of those things, please let me know. I'll offer you the same. You are all in my prayers tonight. God Bless.
Reply #2 on: October 19, 2007, 09:17:42 PM
Hello, "heretohelp"! I'm Mary Ann, the founder of Get In Touch and I was so happy to see your post and your offer of support to anyone who might need it that I spoke with some of my GIT Board members today about you. We realized that the "Gals Forum" and the "Guys Forum" were not the only forums we needed to be able to provide. We are now working on setting up a "Girlfriends Forum" for all of the amazing friends of survivors that are looking for a little support of their own. Wow - thank you for getting in touch with us and inspiring us to help a special group - our girlfriends! God bless YOU!
Hope Lives!
Mary Ann
Reply #3 on: October 19, 2007, 09:33:59 PM
Amen to that Looking forward to contributing to the Girlfriends Forum. God knows, we can all use a "little help from our friends." Funny thing- I thought of calling my two sisters tonight , when "We are Family" came over the radio. It was a reminder of all the good times then, now and yet to come. But instead, I continued frosting my son's 5th birthday cake, thinking of all the reasons why I couldn't call at 8:45pm. Seeig the reply to my message Mary Ann, was a good reminder of why it's so important to just do it...instead of just think it, sometimes. We may never know what all of those tiny deposits of love do in deepest parts of our soul.
What the heck is a sentinel node biopsy?!
on: August 13, 2007, 02:59:31 PM
Don't freak out! A sentinel node biopsy is a really good thing - a little painful, but really good. I had mine along with my lumpectomy. When I got to the hospital, after being given a little something to keep me calm (gee, thanks!), they took me down to radiology and the tech injected my breast in the area of the lump. There were several injections and because they can't give you anything to numb the area or it would interfere with the results, it was pretty uncomfortable. However, my friends, this "pinchy" procedure helps determine if there is lymph node involvement and that means you will be able to start a protocol that best attacks your stage of cancer. Soooo.....getting back to the sentinel node biopsy.....they take you back to your room and you wait. Swell.
The injections are a dye that, through the miracle of science and a whole lot of things I don't understand, go right to the "sentinel" node. My surgeon referred to the "sentinel node" as the "first little soldier to stand up and take the shot" for the rest of the lymph nodes. Kind of a cute analogy in a not so cute time in your life. This node is then located and removed and biopsied. If it is benign, you are one lucky chick! If it is malignant, well, hey, you're still a lucky chick, in that you are now officially on the way to wellness. The first thing they do is take a few more lymph nodes around this "sentinel" node to get a clean margin. A clean margin is the area around the malignancy that is considered cancer free. Kind of a cute analogy in a not so cute time in your life. After they get this clean margin around that little soldier, you are off to the recovery room and all the ice chips you can chew!
The recovery from this sentinel node biopsy is a few weeks, I hate to tell you. Patience, my friend, patience. Augh.
Foods to avoid
on: December 06, 2007, 11:51:19 AM
Hello there,
I am just starting chemo, and not sure about what foods should be eaten and which to avoid.I would appreciate any input. I am on once every three weeks for 12 weeks of Adriamycin and Cytoxan, the last 12 weeks of Taxol will be once weekly. I started chemo the 3rd of Dec.
Thank you in advance,
Kathi Carnes
Reply #1 on: December 19, 2007, 02:51:48 PM
Hi Kathi!
I'm a little over three years out from my last chemo, but I also had the AC cocktail with the Taxol 'chaser!'
My doc advised me not to eat fresh fruits or vegetables (pesticides); sushi (just in case of parasites and other super-yucky reasons!); alcohol (not sure about why, but I didn't miss it at all and I decided to never have alcohol again in solidarity with a few of my friends who battle alcoholism and who went above and beyond the cal of 'friendship-duty' when it came to my cancer); no green tea or pomegranate juice or acai juice - all are wicked-high in anti-oxidants, and when you're on chemo, the last thing you want to do is de-"tox"! Sister, you need those toxins to kick cancer smack in the arse!
Thanks for posting - keep in touch and let us all 1/ know how you're doing; 2/ help you do it! We're with you, Girlfriend, and so is God.
Keeping you in prayer, Kathi.
Hope Lives~
Mary Ann
Reply #2 on: December 21, 2007, 10:39:27 AM
Thank you so much for the info regarding foods to avoid. Is there any printed information that you know of that I can read that talks about what foods to avoid?
Thanks for all the well wishes and prayers, I can really feel the love and support from all. I am going to be a survivor also.
Sincerely, Kathi
Reply #3 on: December 21, 2007, 12:06:28 PM
Give me some time, Survivor-Girl, I'll have to do some checking. My "personal library" includes a fabulous book called "Crazy Sexy Cancer Tips" by dynamo Kris Carr - chock-full of super info for anyone in the middle of a 'wellness challenge'.
I'm glad you feel the love and wishes coming your way - that's why this forum exists, my friend - for you.
Peace~
Mary Ann
Why is my hair growing in curly?
on: August 13, 2007, 04:36:35 PM
Okay, Shirley Temple, not to worry - the hair follicles relax the farther you get away from your "chemo days" and the hair will grow out straighter. It might even be a different color. I have friends who had jet black hair that grew back white. That's right, white. As your hair grows, it might weigh down the hair at the root and it will even feel straighter. The body is amazing and your hair may end up completely different than what you were used to. It's a whole new "normal", that's for sure.
I’m almost done with chemo and I’m afraid - why?
on: August 13, 2007, 04:31:33 PM
Chemo is your friend, that's why. It's been doing it's job and the reality that you'll be "on your own" is setting in. It's perfectly normal to be afraid. I was. Still am when I actually sit down and give it some thought. But you can't let that interfere with doing what needs to be done. Living. Take a deep breath. Move a muscle. Change a thought.
Is the chemo giving me hot flashes?
on: August 13, 2007, 04:11:21 PM
Yes, indeedy, sweetie! I found that they were really awful after I took a shower. I told a Gal-Pal and she told me that she turned the shower to cold for a few seconds before getting out. Whaddayaknow - it actually worked!
Neuropathy
on: October 08, 2008, 11:19:33 AM
Hi ladies,
I finished chemo in July and radiation last month. My diagnosis anniversary is right around the corner. Perfect timing - the same day as Relay for Life! Glad I'm here to celebrate and walk that survivor lap. But that brings me to my problem.
I still have terrible neuropathy in my feet. I've been on Gabapentin and my plastic surgeon recommended Sea Buckthorn oil. Nothing seems to work. I'm starting to feel a little better in the morning, but those first 50 steps in the morning can bring me to my knees. I feel like I'm in need of a walker sometimes! At times I feel pretty good, but then it comes right back. I’m hoping that it means it's finally going away! I'm tired of wearing ONLY sneakers, All day, all night! I miss my shoes!
Has anyone experienced neuropathy after taking Taxol? How long has it lasted? I know it's all individualized, but how long can I expect to be 43 and walk like I'm 93! and don't say until my next birthday when I'll be 44 and walking like 94! (At least I still have my sense of humor!)
Reply #1 on: October 08, 2008, 11:37:29 PM
Hey, Girl!
I think I spoke with you this afternoon! Congrats on your anniversary - it's like celebrating a brand spankin' new birthday!
As for neuropathy and taxol - gadzooks! - I nearly ripped the skin right off my feet trying to get at an itch that could never be scratched. Honestly, I'd kick off my sandals (summer chemo for me, too - 2004) and scrape my feet on doormats, sidewalks, you name it. Nothing worked, I just had to ride it out. It got better fast, though, once the chemo stopped. By fast I mean a couple of months - I guess that's not really "fast" - but it did get better.
The neuropathy I have in my hands...not so much. There are days I'm back to that "skin-ripping" feeling on my thumb on my left hand, for some reason. Who knows why that thumb on that hand could make me so crazy - but it can be pretty wicked. I try to keep it in perspective, though - I am just so happy to be alive I look at it as a pretty small price to pay.
Congratulations and let me know if you'll be joining us on Sunday - can't wait to meet you!
Hope Lives!
Mary Ann
Any suggestions for celebrating that “one year” anniversary?
on: August 13, 2007, 05:02:46 PM
I took my kids to see the Lion King on Broadway and out for a frozen hot chocolate at Serendipity. Do something, though - have a massage, meet some girlfriends for lunch, have ice cream for breakfast, but do something to mark this important day. It is the day you began your Wellness Journey and you should celebrate it.
What’s the deal with nipple reconstruction? How does that work?
on: August 13, 2007, 04:52:33 PM
My nipple reconstruction was really successful and I'm really, really happy with it. My plastic surgeon explained it to me like this: It's kind of like origami with the skin on your breast. They actually cut the skin in a star-like pattern and sort of twist and fold and stitich it all into a nipple. It sounds like it hurts, I know, but, this is one moment in time that you will be grateful that the nerve endings were removed when you had your mastectomy. You won't feel a thing. I also had a skin graft from my abdomen (I had three c-sections, so I had a scar to work with) and they removed a strip of skin that was then cut into a circle shape with a hole in it. My surgeon then "popped" that little "donut" onto the newly formed nipple, beautifully stitched it in place, and voila - nipple reconstruction! A couple of weeks without carrying heavy handbags and groceries, but, let me tell you, they look fabulous. Really. I had them tattooed a few months later, just to deepen the color and make them even prettier! My nipple reconstruction was really successful and I'm really, really happy with it. My plastic surgeon explained it to me like this: It's kind of like origami with the skin on your breast. They actually cut the skin in a star-like pattern and sort of twist and fold and stitich it all into a nipple. It sounds like it hurts, I know, but, this is one moment in time that you will be grateful that the nerve endings were removed when you had your mastectomy. You won't feel a thing. I also had a skin graft from my abdomen (I had three c-sections, so I had a scar to work with) and they removed a strip of skin that was then cut into a circle shape with a hole in it. My surgeon then "popped" that little "donut" onto the newly formed nipple, beautifully stitched it in place, and voila - nipple reconstruction! A couple of weeks without carrying heavy handbags and groceries, but, let me tell you, they look fabulous. Really. I had them tattooed a few months later, just to deepen the color and make them even prettier!
I finished chemotherapy six months ago, why am I still tired?
on: August 13, 2007, 04:42:38 PM
Your body has obviously been through a lot and is still recovering. Listen to your body and try to rest as often as you can. It's normal to be tired. For more than six months now you have had emotional, physical and psychological trauma. It's easy for me to tell you to rest, but the fact that it's normal to be tired should hopefully give you some peace of mind. Now, go put your feet up, will you?!
When am I going to feel like myself again?
on: August 13, 2007, 05:19:08 PM
That's a tough one because everyone is so different. I know that when I had my babies by c-section, they told me it would be twelve weeks before I felt like myself - they were right on the money. Chemo, mastectomy, lumpectomy, radiation, sentinel node biopsy, reconstructive surgery - there are so many variables wrapped up in each one of those things. Don't compare yourself to anyone else or how they're doing, what they're doing or why they're doing it. That, my friend, is a slippery slope that can cause you a whole lot of unnecessary stress. Your protocol is right for you and you will feel like yourself when your body is ready to.
Every ache or pain sets me into a fear of recurrence frenzy. Help.
on: August 13, 2007, 05:12:58 PM
Me, too, sister. I think this is our new normal and we just need to be smart about the aches and pains. I had a nosebleed that absolutely freaked me out. It turns out I had a cold, plain and simple. But, we Survivor Girls go from 0-60 in two seconds flat when it comes to that "R" word. I look at Elizabeth Edwards and think, wow, that's grace, that's faith, that's me. Find a friend that doesn't mind your freak-outs and freak out - sometimes that's all you can do.
Four Years and counting…!!!
on: February 26, 2008, 11:28:25 PM
Okay, gals, I just passed my four year mark since my diagnosis. Honestly, sometimes it feels like it was twenty years ago....and sometimes it feels like it happened just yesterday. Every day felt like it was a week long, and every night, well....yikes - they were endless.
That's when I had to freeze my Visa in a glass of water. Why?! Well, many years ago my girl Oprah did a show on "curbing your spending" and, okay, okay, it seemed like a good idea at the time, and I had to do SOMETHING to stop those 3am Home Shopping Network purchases! (By the time the darn thing thaws out, you're wide awake and realize you don't really need a set of baking pans that can make a life-size basketball cake, or 28 more Rodney Yee yoga dvd's.)
So, here I am, further away from my cancer than ever before. My oldest daughter turned 17 today and I am alive to celebrate with her. Yep, it's a great day!
Hope Lives~
Mary Ann
Am I really qualified to talk to a newly diagnosed woman?
on: August 13, 2007, 05:24:34 PM
Hey, baby, you're in the 2-5 year spot, so you're darn tootin' you're qualified! Lend a sister an emotional hand and a menopausal shoulder to cry on. We pave the way for those that come after us. Do it!
Reply #1 on: October 06, 2007, 09:50:32 AM
I have a friend who has a daughter that was diagnosed with breast cancer last February. At her Mom's urging, she called me late one Saturday evening and cried and cursed and cried and cursed. She was angry and doubtful. I listened and answered all of her questions and told her how important it was to get a second opinion. I told her to go ahead and call my breast surgeon, right now, don't wait until Monday morning. Well, long story short, she called the service, my surgeon called her back within a minute and did more for this woman than she will ever, ever know. When she called me back after talking to my surgeon, she was a different person. Calmer and curse-free!! She's a great gal, a survivor, and I knew that her "fire" would be something she could channel into wellness. When she thanked me over and over for spending so much time on the phone with her on a Saturday night, I told her - confidently - that she would be doing exactly the same thing one day. She laughed and dare I say, did not believe me! Well, she's her mother's daughter, and she is doing exactly what I told her she'd be doing...mentoring newly diagnosed gals, driving them to chemo, picking up their visiting family members from the airport, you name it.
So, are you "qualified" - are you kidding?! You're a survivor, girlfriend - pass it on!
I just want to pretend it never happened. Is that so wrong?
on: August 13, 2007, 05:26:38 PM
You need to do what you need to do. Period. If pretending works for you at this moment in time, I support you.
Reply #1 on: October 06, 2007, 09:26:31 AM
You need to do what you need to do. Period. If pretending works for you at this moment in time, I support you.
I’m regretting not having a bi-lateral mastectomy? Is it too late?
on: August 13, 2007, 05:34:23 PM
It's never too late - for anything. Talk to your doc about this right away, so you can move on and not be bogged down with regrets.
What’s so magical about the “5 Years Out” Anniversary?
on: August 13, 2007, 05:32:11 PM
You know, I'm not really sure, but I do know that most recurrences take place within that 5 years, so it's a medical milestone that unfortunately, isn't a promise. The further you get away from your "Wellness Challenge", the better it is - physically, emotionally, psychologically. That's the magic - it's all what you want it to be.
Let’s get “down & dirty” on nipple reconstruction?
on: July 21, 2008, 08:10:20 AM
Okay, chickies, ya' wanna talk nipples - let's talk nipples!
My nipples turned 3 on April 28th - I knew from the start that I would "do it all", from the mammogram to the last tattoo, and if you have the right doctors (and tattoo artist!) the result can be just beautiful!
Let me start by telling you that I documented my chemotherapy, bi-lateral mastectomy, reconstruction, (via tissue expanders and silicone implants) including nipple reconstruction and tattooing, with a photojournalist - and we are in the process of editing 12,000+ pictures into a journal to present to women upon diagnosis. Time Magazine published a photo essay two years ago with some of the photos. If you are interested in seeing some of this, be sure to watch the Strength Video, which Melissa Etheridge gave me her song, "I Run For Life" for use on our website. Get In Touch is a non-profit organization I started to, among other things, educate young girls on the importance of breast health and self-exam. Anyway......
My plastic surgeon did what he referred to as an origami-like, cut and fold and sew, nipple making. I wanted decent "projection" and I'm really pleased - he listened to me and did what I wanted. So after he did the fold and twist and sewing that forms the nipple, it's on to the next step. I opted to have a skin graft for the areola.
I had 3 c-sections, so he was able to go into that scar and remove a 4" x 2" strip of skin that he then cut two "areolas" out of. Then, in his words, he cut a "donut hole" right in the middle and then "popped it" right on over the nipple he had just made. But, before he "popped" it on, he first had to remove a layer of skin around the new nipple in the shape of an areola, in order to reveal a blood source for the graft to adhere to. Well, now that it's on, he made hundreds of teeny-tiny stitches to keep everything together.
Then, he took a bolus (not sure how that's spelled) a 2"x2" square of sponge with a nipple sized circle cut out in the center. He actually attached the bolus to each breast with three small stitches - now the newly grafted nipple could breathe, but is very well protected.
So.......I wake up in recovery, look down at my hospital gown that is "popping" out a good two inches on each breast...and I say to him, "Whoa. I wanted projection, but exactly how big are these nipples?"
I am a very good patient. I do (and don't do) exactly what the docs tell me to do (and not do!). He told me to do nothing for two weeks; that believe it or not, after all I'd already under-gone, this was the most delicate surgery and procedure, because it was a graft. He told me to lift nothing heavier than a can of soup. No purse, no vacuuming, no laundry, no driving - try to really take it slow. I did very well, the graft took beautifully and I healed quickly.
In fact, when he first removed the bolus' a week later, even with the still visible graft stitches and the not quite healed way they looked, I was laughing and crying giant tears of joy. I kept saying, "thank you, thank you, thank you" - and he began to cry and said, "this is why I do what I do - to help women, to help you, recognize yourself again."
The next day I was in the shower and, I know you'll understand this - without even looking down at them, just looking straight ahead in the shower, I could tell I had nipples! It was one of the most wonderful days of my life! I don't think I even realized how important this was to me, except that when any aspect of reconstruction is important to you, it's really important - and you want it done the right way.
So, later that morning, I called my darling doctor and told his receptionist to give him a message from me. I told her to tell him I said, "I love you, I love you, I love you, I love you!" Five minutes later he called me back and when I said hello, he said, " I love you, I love you, I love you, I love you!" I said, "Ian, this morning, when I was in the shower, without even looking down, I knew I had nipples!" And he said to me, "This morning when I was in the shower, without even looking down I knew you had nipples!" He was an amazing doctor!
For weeks I faithfully applied an antibiotic ointment and had absolutely no problems. I have friends who had nipple reconstruction and drove right away, carried laundry, moved their arms, and had infections, graft rejection and even had to have repeat surgery. I can't tell you how important it is to really do nothing until that graft takes.
It took several months for the redness to subside (I'm fair) and my doc said it was best to let everything settle down before making a tattooing decision. At first it looks like tattooing won't be necessary, but as the graft really takes, it fades and is even a different color from the new nipple, which, if you remember, was fashioned from your breast, so is that color. My doc had a permanent cosmetic artist do the tattooing, and he was wonderful. He uses 3 or 4 different colors of pinks and browns - areolas are not just one solid color, you know! He recommended a "touch-up" a few months later, but I just haven't made the time for that, although I am going to do it soon, since the color does fade a little. Topless sunbathing and chlorine also make the color fade slightly. For me - it was well worth how I felt and continue to feel. I felt like my breasts were two unfrosted cupcakes! I brought a Barbie doll with me to the hospital that day - my daughters and I cut Barbie's hair nice and short so she looked like me, and I showed her to my doc with her shirt off and said, "see this - I don't want to look like her anymore!" He took Barbie into the OR with us and actually drew nipples and areolas on her! He attached her to my IV pole so she was one of the first things I saw in the recovery room! Have fun and keep your sense of humor, no matter what!
When I finish the journal/book, all of this, in photographs and narrated by me and my docs, will be in a friendly format that will be a resource that I know I wish was available when I was wondering what in God's name "nipple reconstruction" was!
Okay, girlfriends, I hope this was helpful - I know it was wordy, but I wanted to be comprehensive and accurate.
I'm here if you have any questions - and just know that I love you all and pray for you every day - everything that I've done and continue to do is for you.
Hope Lives!!
Mary Ann
A Dietician’s Cancer Story
on: October 27, 2007, 08:55:03 PM
Hi Ladies,
When my sister was diagnosed with Breast Cancer, three years ago, a very kind and supportive friend bought all of the women in my immediate family, copies of the book "A Dietician's Cancer Story," authored by Cancer and Nutrition Specialist- Diana Dyer. She's a three time cancer survivor. On her website- found at http://www.cancerrd.com/
Not only is her story inspiring, but she gives clear, concise and empowering advice; from coping techniques to recipes. I personally enjoy the recipes. They are quick, easy and full of life giving energy. She even offers shopping lists to make life a little easier.
Check it out! You can find most of the info that's in the book, right on Diana's website.
God Bless.
I’m afraid to touch my wife near her mastectomy scar. Am I a bad husband?
on: August 13, 2007, 05:58:11 PM
No. You're a scared husband.
Hold her as much as possible. Touch the spots that don't frighten you. Tell her you're afraid, I can guarantee she is, too. You can work through this together by being honest. She may not know that you're afraid and might mistake your fear for something else - don't let her go there, soothe her with the truth and go forward together.
What exactly is a mastectomy?
on: August 13, 2007, 05:52:29 PM
A mastectomy is when they remove all of the breast tissue, including the nipple. The nipple is the main duct and in most cases it's important to remove it. Breast tissue goes right up to the collar bone and under the armpits. There are milk ducts in breast tissue and a mastectomy removes as much as possible.
How can I fix this for her?
on: August 13, 2007, 05:44:19 PM
You know, it doesn't matter if you're talking about your wife, your girlfriend, your mother, your sister or your daughter; you can't fix it, so don 't, I repeat, don't beat yourself up about it. Just listen. Let her cry. Let her freak out completely. Hug her. Tell her she can do it and that you'll be there to remind her. Don't be afraid to cry with her. If you're afraid to show her that you're afraid, she may think you're not. It's at least a million miles from the head to the heart, so don't worry that she might be a tad irrational. She is scared and she can be a tad anything.
Getting ready for the biopsy.
on: February 24, 2008, 02:06:29 AM
Hello all
My name is Jenn and im waiting and waiting for the biopsy. Can't sleep, can't eat just trying to get by being normal. I dont know what will happen i just know im scared like i have never been in my life. the problem is, everyone keeps telling me to pray and keep positive. Somewhere along the last 20 years i have lost my faith so im out of luck i think. But im still hoping that i have a place in the big guys heart. I have no right to be on this site, other than i dont know where to turn. I am having a bilateral ultrasound guided biopsy on March 7th. any comments would be appreciated
thanks
Jennifer
Reply #1 on: February 26, 2008, 11:12:17 PM
No, no, no, Jennifer - this site belongs to you, was created specifically with you in mind. YOU are the reason why we exist.
I know you can't sleep and can't eat and I'm not even going to tell you to try. It's scary and there's no way around that until you have those results in your hand. And then, no matter what the results are, I promise you will have peace.
Praying and being positive are two really good things to do. However...if you want to scream and cry and talk about every negative scenario running through that pretty little head of yours, well, sister, this is the place to do it.
Lost your faith? Hmmm...not you, wondering if the "big guy" still has room in His heart for you. Sounds like faith to me, girlfriend. God IS with you and so am I. We all are. That's why we come to this site, why we "get in touch" with other gals that we know need a little TLC, a little info and yes, an occasional reality check.
Okay. Bi-lateral guided biopsy. Not invasive, so that's good. Bringing a friend? Definitely a good idea. My pal Nancy is a little lady, but her shoulders were wicked-big when I needed to be held up - she was awesome. She came to my appointments armed with a big, fat notepad and nerves of steel. Pick a friend that can be neutral and level-headed. Don't worry if a family member can't be with you - sometimes they're too close for comfort, if you know what I mean.
I'll be praying for you - we all will. Please come back to the forum as often as you like - stay "in touch".
Hope Lives~
Mary Ann
Reply #2 on: March 11, 2008, 11:46:26 PM
Hi Maryann
I just got the news and I am cancer free. I first and foremost want to thank you for your reply! It meant so much knowing that you could understand my perspective. I feel lucky that I dodged a bullet, so now changes have to be made. Stop smoking, uggggghhhhh! cut down on all the fun things like caffeine and wine. But I need to embrace this second chance I have been given, so many others have a much harder road. I hope i can still be a part of the discussions. Biopsy sucked big time and I hope i Never have to do it again but have been warned that both boobs are full of fibroids, so mammograms will be dicey here on out. This website has been a blessing and you are doing wonderful things!!
Love to all
Jennifer
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