African American Women & Triple Negative Status
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Yep Mina, you got it right - we must treat ourselves - every chance we get!
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bar62-go for it !!! Chris is so crazy anyway, he makes me laugh. I am one that thinks "Laughter is good for the soul", I heard it some where, but I believe it. I saw the Tyler Perry Movie--I Can Do Bad By Myself , I thought it was a good movie. I am with patoo, be good to ourselves!!!
Linda C
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Hey Ladies, I tried this earlier and erased it. Trying again now.
Haven't been on for a while 2/2 inability to check in at work, working FT, running to v-ball (15 yo) and soccer- (8 yo) practices & games, reviewing HW, etc.
Update: Saw BS, wound care-wound practically closed. now down to pin point area. I'll see Onc on Monday. BS said my team discussed me while at a BC conference last week and determined that I've gotten as much AC as if I'd done dose dense and am only lacking about 1 taxotere tx if it had been done on DD schedule. (not taking the Q2week timing into consideration nor the fact that DD is usually taxol not taxotere). I'm fully prepared for her to say that she wants me to go straight to Rads and skip the last 2 of 6 TAC. I'm at peace either way. All this time waiting has allowed me to 1) reaffirm that my hope is not in chemo but in the Lord 2) feel great and 3) determine that as my peach fuzz/buzz cut grows back-I've got a receding hairline!!!-outshining my husband's. Apparently my sisterlocks hid a multitude!
Peace, Love, Life & Laughter!
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dershell- I so know how you feel. We've all felt the fear, disappointment, apprehension, concern, anger, frustration, bewilderment related to being dx'd with and tx'd for BC. And it's made even more intense when you know you still have a lifetime of child-rearing to do. My oldest is 23 and has just been nominated for a fellowship, sends me scriptures via text, and is so capable and thoughtful. I'm so pleased and at peace in knowing that she'll be OK in the world. My youngest is 8 and I know that my first concern has been for them (my 8 yo son and my 11 and 15 yo daughters) and wanting to make sure I can be around to "train them up right." I TRULY UNDERSTAND. Please know that Patoo is right-you can come here for info, to rant/vent/cry/rave/commiserate/pray and be prayed for without judgment. God Bless you. I'm so sorry that you, too, have been dealt this hand. You're going to find, however, that you are STRONGER than you have ever realized. See the "positive about negative thread." Exercise and low fat diet has been shown to reduce risk of recurrence. Don't assume the worst! As Stephanie or TripleNeg would say-God is Able; and as Roya would say, BELIEVE.
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Alaina- you crack me up! Just know that things are a little different for those of us who are married, too. You should be a writer/columnist/comedian or something along those lines. Make some money with that wit!
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Bar62-Praying for you! Enjoy Good Hair! Laughter is good medicine!
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ILinda- So glad to hear that Chemo is going well for you! You truly should be named Indomitable! That lemon cake sounded sooooo good! Really wish I could've had some.
Patoo-heard from my aunt in preparation for Thanksgiving. Was told that she said she would "HELP cook." Uh-oh! You warned me! So, Dad will roast the turkey, make the gravy and do the yams; aunt will do "dressing", other aunt will do sweet potato pies; I'll do pecan pies; I'm hiring out greens (don't tell, mine are pitiful); buying rolls (they know),; daughter doing ham (her favorite); aunt to show me how to do her broccoli/rice/cheese casserole. Now....who can we get to clean?????
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Hi everyone,
My name is Angie and I was diagnosed Nov.1 2007.I found the lump during a self exam. The mammogram came up clear, but the ultrasound showed the lump. I had a mastectomy and all testing done by the first week of Dec 07. My onc gave me a break for Christmas and jumped on it the first of the year. I finished my treatments last year. I still worry of reoccurence but I don't let it take over my thoughts. I'm 38 and have 4 children (Tyana-16, Christopher-8, Jordan-5, Alexis-4) I am married going on 16 yrs. I've been on the site before, but this is my first time seeing this forum. Right now I am going through reconstruction. I have an expander in and I am so ready for the implant. It's annoying, but I am lucky that it has not been painful. I just wanted to introduce myself.
Indomitable- That sounds so GOOD!! My SIL and I are ready for my mom's cooking
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HI Angie, welcome, although we prefer to meet people in other than this website. However, it is what it is and so we come and give and get support. It's been wonderful to be with those going through the same tunnel and having the same fears. You are definitely not alone with the worry over the fear of reoccurrence. I normally don't think about it at all except for periods like now when I feel little tingles/stings/whatever in or around the breasts.
As Indomitable1 one alluded to, it is in the hands of the Lord. He would not want us to worry but to turn our fears over to him.
Indomitable1 - looks like Thanksgiving will be over here - me and my bigggggggggg mouth!!! I'll probably do most of the cooking but I also don't do greens. My niece will probably do them - her thing. It will only be about 10-15 people so not too bad. Think if I start cleaning now I might be ready. Better take off from work the day before Thanksgiving though.
It's late. Will check back in tomorrow.
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Angie- Glad you found us. Sounds like you've got your hands full, too!
Patoo-oops!.... Welcome to the T-Giving Hosting Club! (I was drafted-they voted and I wasn't there! Are you saying you volunteered?!?) I'm taking the day before and the day after. I could start cleaning now-but who wants to do that??? I actually have Columbus day off but came home and had a leisurely lunch and am surfing the net before the kids get home from school. Luxurious!
Saw the oncologist today. She and the rad onc spoke while I was there. I'm to have a PICC line placed and get the 5th of 6 TAC this week. Won't be starting rads until completed. I guess I'll be back to bald. I actually prefer bald to the receding peach fuzz-although it is awfully soft!
Linda-l hope all is well.
Dershell-keep us posted.
Bar62-how was the movie? I may just keep the bald (vs. going back to sisterlocks...the in-between-phase is iffy).
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Indomitable1 - kind of volunteered. Day after T-giving we are going down to a hotel that has an indoor water park and staying overnight. Each room holds 4 and you get 4 waterpark tickets in the price. Can use the waterpark from before check-in on day of arrival to 10 hours after check-out; so 2 full days of water fun. The hotel (Marriott) is only about an hour from me so everyone will come for dinner on Thursday, crash whereever they can find a lounger, bed, futon, piece of floor, and go down to the hotel on Friday until Saturday. Hopefully from the hotel on Saturday most will go straight home. My sister, niece and nephew are from NC and Atlanta so will stay with me until Monday.
I remember not liking my sisterlocks when they were very short. I'm not a wild-hair type of person so little locks pointing in every direction drove me nuts. Now almost 3 years later they are shoulder length. I can even pull them back now, though not yet into a ponytail.
Indomitable1 - if you don't decide to re-attach your sisterlocks, you may consider having them attached to one of these: http://www.soclocsoc.com/video.php an alternative to traditional wigs?
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Do I have to be African-American to post here? I am triple negative... I have been following you ladies for some time and feel that I can connect here on this thread... Would you ladies mind if I join you from time to time ?
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Sunris, I can't imagine why you wouldn't be welcomed here! I'm not Triple-Negative but I've been welcomed with open arms! Pull up a chair, and join our circle of prayers, love, and support!
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Hey Ladies,
Great to read all your posts!!
Indomitable---I will keep in my mind you said I should be named Indomitable---I like that!!! Hang in there with what you've got going on--I like what you said--Trusting in God!!
Ya are gearing up for Thanksgiving---I have not got that far in life---I got to have my carpets cleaned, that is as far as I can see right now. I think my daughters are coming around the Nov.14th as one is speaking at a conference at our church, I don't see them coming back later in the month, but we may go to see them in Texas before the year is out. One moved and you know Mothers, when I talk to her I need to know where she and the grands are at---does that sound silly??!
Shout out to--Alaina, bar62, patoo, ---Hope all is going well for ya. Just reading your posts, you all sure know how to have fun and I just love hearing that---we could all be some where with our heads hung down and there is none of that here(although if we decide to do that, we sure got the right to!!)---I Love It!!!
deshell---hang in here with us, we will walk with you all the way!!
Angie--Welcome!! Post often we are here to support and help.
Sunris--Welcome--I am not Triple Neg either, I don't know how we got to start hanging out on this thread, but we do and it has been so nice. Post often we are here.
Roya---Where are you???
We must continue to Pray for Stephanie.
Take care everyone and stay Blessed!!
Linda C.
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Radiation Eve!
Well, let's get the ugly out of the way first. I had a scare today.
I was gazing at my scar this morning (as I do every morning) and I noticed thickening and pocking under the center section of the scar-line. It was same sort of "look" that the skin on my breast had prior to the cancer diagnosis.
I remained calm on the surface, but inside I was completely freaking out! I'd read far too much (on the Internet) about cancer recurring in/on/around scar-lines from surgery, and as strong as I've been, I really don't know how I would have been able to stomach that happening.
So I went to my PT appointment and was on the phone calling upstairs to my surgeon's office to have them take a look at it on an emergency basis. They squeezed me in and assured me in a very compassionate and understanding manner that I had nothing to worry about. It was just the skin changing as it healed. And most importantly, it was nothing that would delay radiation treatments from starting tomorrow.
But I was scared ya'll. Recurrence is always just below the surface of primary cancer survivors, and it doesn't matter how strong and brave we appear on the outside, nor does it diminish how grateful to God we are of our current NED (no evidence of disease) status. The fear is always there...riding side-saddle with our faith. You just work every day not to let it take over your life, to focus on your faith and turn down the volume on your fear.
On a much brighter note, and boy was THIS needed today. I went by the yarn shop and received the absolutely WONDERFUL afghan my yarnie friends knitted for me! I cannot WAIT to wrap up in it (it's HUGE!) on a cold winter's night, snuggled up in my recliner! Yet another labor of love and kindness that I've been the blessed recipient of!
That really made my day! My wonderful support system always manages to do something right before a big phase in treatment to help me enter that phase with confidence; knowing that I am so loved and cared about!
And speaking of love and care...I spent Saturday evening with my college sorority sisters in Phi Mu! It was our first real reunion-get-together in 17 years!!! It was so great to see everyone and when I walked in, I was greeted with applause! That was a little overwhelming, but I needed those hugs and well-wishes, and I thank each and every one of those wonderful women for just embracing me and encouraging me! And Praise God, I didn't get home until 1:30am in the morning, but my energy levels remained HIGH! Two months ago, heck even a month ago, I wouldn't haven been able to hang out like that, but I'm so glad, things are settling in to my "new normal!"
October is proving to be as busy as I expected, but I welcome all the activities, projects, and yes, even tasks at work!
Next month, I'm going to the LBBC (Living Beyond Breast Cancer) Conference in Philadelphia! This will be my first one, and I can barely wait! I'm taking two workshops while there; Managing Your Fear of Recurrence, and Journaling (to maybe help with this book everyone keeps telling me to write, LOL!!!)
So this is the deal; radiation treatments daily (Mon-Fri) for about 5-10 minutes a day. I go in, strip from the waist up, put on a gown open to the front, lock my belongings in a locker and head down the hall to a room with a door about 6 inches thick. Lay on the table, slide into my AquaCradle, lift arms up over head, get situated by the techs, and then lay there to get what is essentially an xray, but a LOT stronger than your normal xray!
Potential side effects can be itching, burning, rash, skin peeling, all in the affected area getting the radiation (left chest area, under left arm area, upper chest near collarbone). Fatigue towards the 3rd or 4th week of treatment is also possible. The great thing about rads is that the techs see you daily and can monitor any potential skin problems and nip them in the bud before they progress. More serious potential side effects could be heart damage and damage to the upper quadrant of my left lung. But nearly every one I've spoken with whose had rads has said that it's a piece of cake, a walk in the park, compared to chemo. I'm trusting that to be true.
My first treatment will be tomorrow at 5pm. After that, all other treatments will be at 8 in the morning, so I can go to work afterwards. And if it's anything like chemo, before I know it, I'll be posting here telling you I'm nearing my final treatment!
So here's to walking in the park...with cake!,
Alaina
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Good afternoon, Can anyone else hear the awful drilling going on in my building? arr. The elevator company sent loads of people over to repair the elevators. Why did they do that? Well, this coop is 40++ years old and one of the elevators stops working at least once a month. So I have to suffer now...I hate drilling and this makes me miss living in a home with my family...arrrgh.But I'm SO glad my mom left me this place, especially since I've not been able to work for a long while..arrrrgh.
Chris Rocks movie "Good Hair" made me laugh, cry and think. Chris pulled me in to laugh and I left shedding a few tears. I shed tears for a 3 year old girl getting a relaxer because her mother wanted it done. Why would her mom do that? I remember my Great-granny untangling my hair...do I ever, and I have mixed race hair as do many of us. I wanted to throttle that mother..my great-granny approached doing my hair as just one more aspect of my grooming, NO BIGGIE!
I was astonished to learn that hair weaves can cost so much. But I already knew that hair additions can be very expensive. I had a Critical Care patient, a beautiful young Jewish woman, who told me her hair was nearly non-existent and very brittle. She had been ill for a long time with many serious and critical illnesses. She quoted me $35,000,00 ( that was over 20 years ago) to have her hair thickened and lengthened by experts. So spending thousands of dollars for hair happens...if you want it and have the money for it...I say get it...though some women did mention passing on the rent payments for their weaves, sometimes...*oops*... not good.
One of my nursing school buddies, since passed on with TNBC, shared her hair stories from hell with all of us in school. Her Hell was her mother, who constantly moaned and whined about her "kitchen." She got a relaxer via her mom and then liked it and continued it for herself.
Chris ends his movie/documentary saying that good hair is what you like and what makes you happy and that is so so true. I've been thinking about a weave recently but I have absolutely no funds for that unless my hair comes out.
I love Chris for making me laugh, cry and think all in one afternoon . To think, Chris made this movie because his precious beautiful daughter told him she wanted good hair like her school friend.
Radiation is done for me and I wish everyone hugs and more hugs going through it now.
I wished I'd had the body molder when I was placed in the crisping machine. Every visit I was turned and twisted;sometimes I cried. YUCK! I did burn and peel when she increased the rads for my 8 boosts to 200 from 180 and I'm still fatigued, but I also have several other health conditions. I wouldn't expect this long a period of fatigue if I had done this in my healthy 40s or early 50s.
I should say that my skin healed in less than a week with Vaseline guaze, Aquafor and Remedy cream, a cream my Rad onc likes.
xoxo
Mina
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Patoo- What a great idea about the soclocs! So creative. I think some of my family may be going to Disneyworld (before or after) T-giving.
Linda-believe me, at this point, I am only thinking about t-giving bc my dad and aunt wanted to firm up the plans/menu. Normally I would wait unti the Sat/Sun before the holiday. And, speaking of cleaning carpets, I guess I should schedule that, too.
Sunris-Welcome! Sorry about the TN status.
Mina-thanks for the heads up on Rads and for the update on Chris' movie. Not showing here yet. Can't wait. As I'm considering sporting the BALD head, I realize what a long way I've come. First going natural, then locks, now ok with BALD. As India Arie said- I guess I really am not my hair.
So many of my issues with the BC (and life) have had to do with people's perceptions of me. I am still vital, active (ok not so much right after chemo) and don't want to be robbed of a minute of life. People automatically assume the worse and then say-"Oh but you look SO good. You're doing really well"....as though if you are not looking like you're on death's row, then you should be perfectly fine. I just keep on keeping on. People at work who know were always looking at me to see if I can 'handle' doing my job.And don't look at me as though you feel sorry for me or I'll set you straight. All of us will be touched by CA in some form or other in some one we know/love if not ourselves. This is life....trials are guaranteed-we only get say in how we face them. So we'll keep on keeping on. I guess I'm just saying that we're role models again just in our daily walk. And most of the people have NO idea of how amazing we are!
Alaina- and like you I'm glad that I have supportive friends. It's great that you're so open with your acquaintances. Glad you had a great time. Also glad that your scare was not a recurrence. Enjoy your conference/retreat. I'll be trying to do one in the spring.
Port at 9 tomorrow. Second to last chemo after that!
Maybe some of the above rambling is 2/2 prechemo steroids. Sorry!
Peace.
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Alaina, Bar62, Indomitable1 - Whew - you gals can write. That's good because you get to let off steam. I "think" too much and then edit, remove and delete. < sigh >
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Patoo- yes, I did let off steam-but remember it was steroid induced!
Hope everybody is having a great day!
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Yeah, yeah, yeah, make excuses!!! LOL (just kidding ya)
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Oh , I love reading all of your Posts---Get it out, Get it out, Get it out!!!!
I journal everyday in my lil books----However it is like some one is listening when we read this--We are!!
This is so healthy, I think. We have walked or are walking this road, all together---Keep on Walking!!!
Love to you all!!!
Linda C.
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Flu Shot Goose Chase!
Well folks, I made it through my 1st four (of 28 ) radiation treatments. I don't resemble burnt bacon yet, but yesterday I noticed tiny little bumps in the affected area that look like a mild heat rash, and today I'm itching a little bit. I bought Fruit of the Earth 100% Pure Aloe Vera Gel, and I'm to use it 2x a day (once immediately after treatment and once before bed). Reports I've read from others who used this state that they had no problems with burning/peeling skin. ...yeah...Speaking of which, as I waited in the interior waiting area (where you can be half-dressed) to be called back to the radiation chamber, a woman came into the dressing room pitching a fit! She was totally distressed because one of the techs had removed some of the circular-tape that protected the markings on the side of her chest, and the SKIN CAME OFF WITH THE TAPE!!! She showed us the raw, pink area, and I immediately shifted into self-protective-clear-your-mind-or-think-of-dead-puppies mode! She is in her 5th week of treatment (with another week to go) and clearly her skin was breaking down (yet another potential side effect). Thankfully, my treatments will only BE 5.5 weeks, so hopefully, any of the truly nasty side effects will either not occur or just be beginning just as it's time to end; and the healing will come faster that way.
In the meantime, I will use the aloe vera gel faithfully and wash the affected area like a baby's bottom (squeezing soapy water gently and never scrubbing, patting dry) with Ivory or Dove soap. One study has said that drinking one glass of red wine daily while in radiation will help with skin toxicity issues. When I asked my radiation oncologist if I could have one glass of wine daily, she said I could have two; one for me and one for her! Gotta love medical science! LOL!!!
So, I went in for Herceptin-Only Treatment #10 (of 17) today. With the rain and the cold, it just seemed that every thing and every one was moving in slow motion today. I was also supposed to get my seasonal flu shot. Go figure, the hospital ran out of flu shots yesterday. *sigh* So I had the daunting task of driving around Baltimore and surrounding counties in search of the ever elusive flu shot. After calling/visiting 5 various Targets/Walmarts/Walgreens/RiteAids, I finally found the precious shot at the Safeway in Ellicott City. *whew*
I have a fairly busy weekend ahead and I'm looking forward to it. Even if it does rain the whole time (hopefully it won't, especially for the Breast Cancer walkers on Sunday!)
In the HairUpThere Report, I can happily state that I've got a 5'o'clock shadow! Ok, maybe a 2'o''clock but YAY!!!
The yarn for my newest project arrived today, so after I finish my Welch's Grape Juice with Crushed Ice (nothing like eating your juice with a spoon!), I'm going to curl up in bed and fondle some fiber!
Have a Wonderful Weekend Everyone! Alaina
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Alaina, I had 33 rads; 28 plus 5 boosts so 33 days. I had no skin breakdown at all. No tenderness, no burns. I only darkened in the rad area with a little darker in the boost spot. Finished in May and the lines have finally faded to be almost unnoticeable. And, all that without using anything on my skin during rads. My se during rads was exhaustion and having to go to bed by 8:30 each night; maybe because I worked full-time throughout.
Enjjoy your weekend and walk.
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Wheww! Thanks for the update, Alaina. & Patoo, thanks for sharing your exp with rads. I pray that Alaina doesn't get breakdown. I was planning on using Bag Balm which was recommended by Roya.
Recuperating from chemo on Thursday. ONLY ONE MORE TO GO!!!!!! I guess I had forgotten how fun this was.........NOT! Oh well, starting to feel a lil stronger, less achy. Alaina-I'm thinking of throwing myself a post chemo party! My husband laughed when I told him 'cause hardly anyone knows. Well, it'll be a post chemo SURPRISE party, I guess. Whatever!?!
Did anybody see the story on Congresswoman Wasserman? What did you think? I think since she's in FL some of the few co-workers are comparing me to her-she took NO time off from work juggling surgeries during breaks from congress but she didn't get chemo. She said she had her BMastectomies/ TAH/BSO on the down low to protect her kids. She's pushing a bill to give funds to educate young women about early detection.
Our walk is this Saturday. My counts will be down....not sure if I should go. Here's to a great week! Peace & Health!
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Indomitable1 - I didn't see the Wasserman story but people who have not taken this walk don't understand that one size does not fit all. And, I also didn't get chemo but I think that for me it would have been the worse part of this whole journey. BMasts are not a piece of cake either and of course is gone for life but chemo can be really debilitating and also have lifelong after-affects.
I like the idea of the "surprise" party - hey, why not!
Saturday will be 1 year for me - dx 10/24/08. Was feeling a little vulnerable this weekend - don't know why - but sent out an email to all my AA family, friends and co-workers; told them a little of my story and urging them to do the self-exams and get the annual mammos. Wonder how many will really follow through.
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Patoo-what a great thing to do-sending out the email to empower your colleagues, friends, and family. We must use this for good. I'll try to do the same. I was asked by our Asst Pastor yesterday if I'd mind "coming out" to encourage BSE and annual mammos. Will do! And, congratulations on your 1 year SURVIVORship. You've been such an encouragement on the bc.org forums. I also read your Prayer Warrior submissions. God is using you mightily. BTW, telling people to do their SBEs & get the mammos is like giving your testimony. You can only tell people what you know, but it's up to them to take the next step.
And, I think we all agree just being dx'd with BC is more than enough-forget the other possibly mutilating tx options (chemo, rads, surgeries). Being a survivor is so much more than physical, it's a whole mindset. I really don't think it's any easier for anybody +/- chemo. Dealing with the dx alone makes you a Warrior. Unfortunately, I just don't have those kinds of breaks in my schedule! Too bad I don't want to be a politician.
Linda-how are you doing?
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Hey Ladies,
Just reading all of your posts!!
Indomitable--nothing going on much with me, Thanks for asking.
I had my 4th chemo today, seems to be going Ok. I will be mad if I don't sleep tonite and that has been happening on the evening of chemo---weird!!
Everyone, Stay Blessed!!
Linda C
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Hi Linda! It's probably the steroids keeping you awake on chemo-nights. How many chemo are you going to have?
Alaina
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Hi Alaina,
Thanks for the information--I am always looking at everything I can hear----I am on Navelbine and Herceptin, neither call for steroids---I ask the nurse and she said the meds should not be causing me not to sleep, I am a person who has many sleepless nites, however having to go back on chemo may be causing apprehensions all of its own. Yesterday I took Compazine as ususal, when I came home, I felt like I could feel nauseated, so I took one more pill, needless to say, I did sleep from 7:30 most of the nite.
The tumors are shrinking(when I feel them and look at the areas), I will see the Dr. next week and we should know how long I should be on chemo. I hope and pray the time is short!!
Thanks for asking.
Take care.
Linda C.
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Hello all! I haven't posted since my initial post several months ago, but thought I'd post tonight because I'm having a very tough time right now. My mom was diagnosed with BC (Stage 3B, Triple Neg) in April. Because of the size of her tumor and chest wall invasion, it was determined that she would do neo-adjuvant chemotherapy to try to shrink the tumor prior to surgery. She was selected to participate in a clinical trial of a new drug (Sutent) along with weekly chemo which started in May. She did 12 weekly treatments of Taxol along with daily Sutent for those 12 weeks. The tumor responded very well to the Taxol and shrunk from the approximate size of a golf ball to practically undetectable to the touch. Then about 6 weeks ago my mom began phase 2 of the trial and switched from Taxol and Sutent to weekly Adriomycin and daily, oral tablet dosage Cytoxan. She was scheduled to do 15 weeks of that, instead at last week’s chemo we learned that her monthly ultrasound showed that she is failing to respond to this chemo and the cancer has restarted growth. It is now detectable to touch again and approximately the size of a marble. She has been removed from the clinical trial and we meet with the oncologist tomorrow to see what our next course of treatment is. Most likely the next step is surgery and then radiation. However, what is really scaring me is that, based on whatever the onc saw on the MRI he ordered to confirm the ultrasound results, he has now ordered a PT scan which makes me question whether the cancer has spread. I am very scared for my mom, since she is triple negative, if 12 weeks of Taxol didn’t stop it and Adriomycin and Cytoxan are ineffective, what else is there? Also, my mom is unlikely to do any more chemo after six months already that haven’t been successful. Please, any thoughts/advice would be appreciated. Thank you.
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