Starting Chemo April 2009
Comments
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Oh dear....what have I started-- and how did it happen?! :-O
Er, um, OK...I tried to pick out one of my Funny Stories to tell you, but the only ones that came to mind were out of my Nefarious Youth (those are of course my BEST ones, if you're looking for truth instead of fiction; now I'm just an ugly and BORING old lady and nothing even remotely humorous is going on). Trouble is, I couldn't decide which one to tell -- mainly because I'm too upset to focus on anything cheerful. So, I'll leave it up to you to decide. So girls, pick one story from the upcoming list and I'll tell it to you
If I was going to write a book of this stuff (I'm NOT), these would have to be included in Chapter One, which would have to be called, "They (My Parents) Let Me LIVE?" Yeah I did much more than this but these are just the ones that come to the top of my chemobrain damaged head...
a. "Are you a Man or a Lady?"
b. "Sharks and Bumblebees"
c. "Just Plain Gross -- The Best Kind of Fun!"
d. "Ketchup and Tampon Sandwich"
e. "Hell Hath No Fury as a Teenager Scorned"
f. "The Writing on the Wall"
g. Dr. Demento--a Live Performance"
h. "Don't Get Mad -- Get EVEN!"
Okay, there's good news and bad news: good news: my Pack Rat called me last night. During the course of our chat, he says his workplace is closed on Friday -- asks if I'd be interested in a visit this weekend. I say yes. He'll be here Thursday night.
The bad news: I'm still ON the friggin Lovenox shots and will have to STAY on them until my platelets "come up" to normal. My platelets, as of yesterday's blood test, are dangerously low at 46. "Coming up" means they have to be in the normal range, which is between 130-400!!!!!!!!! Yesterday they handed me a schedule for the next SEVEN CONSECUTIVE DAYS of having to go in and get those horrible shots! I lost it and I burst into tears.
I don't know what the problem is but my blood is TOTALLY messed up of late. Not only are my platelets too low, but so are both my white and red blood cell counts, hemoglobin and hematocrit. I wonder if that's got anything to do with why my joints are, and have been so stiff (since a few days of getting these shots, it hurts to get up and down, to walk, to get in and out of a car or van). But can I ask my oncologist about this? No, because he's out all week, so I'll have to wait until my next regular appointment (4.5.10).
Good luck on your surgery tomorrow Geri. I'm cranky right here with you, only in my case it's the shots, not surgery.
Betsy, I'm still whiny and tired too. Maybe that's why I'm extra-upset over the shots...
Titan -- Oh, I'm so with you -- ever since I did chemo, whenever I see another woman "out there" with really super short hair, I wonder if it's because she had chemo...I still can't imagine why anybody who was HEALTHY would CHOOSE to have their hair THAT short! And I'm noticing more and more such super short-haired women out here of late. Even though I'd fit in with them NOW, I STILL don't go out topless because I think I'm way too UGLY with my hair this short. Yes I remember what it was like being on chemo -- no way could I have worked while on it -- I was like Judy (useless, brain dead and depressed).
OK gotta go...
~Lena.
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Geri..35 hours to go!! Waiting to hear from you!
Lena...any story will do..just bring one on...I need a laugh..I'm swamped at work and grouchy about it..and I'm sorry about those shots...if they are anything like the nuelasta I'm so much with you...hated those damn things...I bet the shot is making your joints hurt...
Ok..I'm starting to wonder..if no one else worked during chemo and I did what does that mean? Does it mean that I really didn't do any work at all? I can't remember much about it actually.....!
Super short hair is "in" I believe....so we are all "in style" and we didn't even know it!
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Titan -- I NEVER followed fashion in any way shape or form, and if UGLY is what's fashionable these days I STILL don't care to look that way. I wore my hair long because *I* liked it and thought it made me look PRETTY. Same thing goes for my choice in clothes -- if clothes don't look good on ME I don't buy them no matter how "in style" they are. I just don't and never gave a damn about what other people were doing, at least not in the sense that I felt I had to do what they were doing.
Maybe THAT'S why you all think I'm funny, because I had the NERVE to totally thumb my nose at society and do things which were shocking and outrageous?
Ummm-hmmmm...tell a story, any story...OK guess I'll just start at the beginning, top of the list...
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All right, shocker #1 of many. I actually remember way too much from my early childhood -- the only real "memory block" was when my mother was pregnant with my sister, who was born when I was 2 1/2. I actually remember lying in a crib playing with mobiles swinging over my head, and being in a baby carriage (strapped in and screaming, screaming, screaming because I wanted OUT! and nobody would let me out!). One of the only things I don't remember from when I was that little was Seeing Mom with a Big Tummy -- and that's actually the story that sets the basic tone of my entire life here. My father told me this story of my Ancient Childhood when I was a teenager, as a way to explain what he had for years called my charming "poisonality," and although years later we parted ways (I "divorced" my whole family because they drove me nuts). The following happened while my mother was about 6 months pregnant with my sister....
...We were at my grandmother's apartment (Mom's mom). Mom, Dad, Grandma and Grandpa were sitting in the living room, talking and having coffee. I was running around and yelling like any other obnoxious two-year-old (derogatory description of toddlerhood is mine). Then, the doorbell rang. I flung it open. It was a friend of my grandmother's who picked me up and (my dad's description) -- picked me up, hugged and kissed me. Important note: MY description/opinion of that -- she made one of those horrible disgusting "cutesy" huggie kissie fusses over a stupid little brat, and BTW I also HATED being on the receiving end of those -- I may not remember that one in particular, but I do recall others from other relatives/family friends doing it to me and YUCK!!!! YUCK!!! EEEEWWWW!!
OK, so Grandma's friend makes her horrible disgusting fuss over me, but she's still holding me, and what do I do? Here it comes...
I ask her with a perfectly calm demeanor, "Are you a man or a lady?" (when my dad told me this story he said I had this innocent cute voice and big wide eyes).
She says, "I'm a lady, honey, why?"
I ask, still calm (and still "cute" according to my father), "Then how come you have a mustache?"
Grandma's friend blushed furiously and put me down immediately, I'm told she, my grandparents and my mother were totally shocked and horrified, but it took all in Dad's power to not bust out laughing.
Sooo, that's how I got started........
~Lena.
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Ok now THAT's funny!
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Oh, thank you Lena - you got me to laugh the night before my surgery. I'm so sorry you are having all these problems with your blood counts and the Lovenox injections - I hope everything will right itself soon, so your achy joints will feel better. And no matter how irreverent you want to be, you responded to everyone's request for a "Lena Story", even feeling as crummy as you do. I hope you enjoy your time with Pack Rat this weekend - you deserve some R & R.
Next time you feel up to a story, I'd be very curious to hear g - "Dr. Demento - A live Performance" . Meanwhile, hoping for better days for you.
Countdown - 17 hours till surgery - ugh
Geri
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Geri - we are rooting for you tomorrow. Good luck and it will be over before you know it (I hope). drop us a note to tell us you are on the other side of it!
Sending love and support across the miles to you!
Amy -
Will be thinking of you Geri...be sure to check in because you know we worry about everyone on here....!
Lena..it does not surprise me that you were a strong willed child..I love it! My dd is pretty strong willed..my son not so much but I always have enjoyed children AND adults that kinda have an attitude! That kind of attitude can get us through alot of junk...it is nice though to..that you let us "baby" you a little...hope you don't mind...
And you are not freaking ugly..no matter that you think you are!
p.s...I always hated those slobbering type kisses too!
Tell me..did your mothers lick their fingers and then clean off your face? I remember my mom did that..yuck! My kids would never let me do that so I was "broken" early!
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Thank you all for your good wishes - I am now going to try very hard to go to sleep, so that tomorrow comes sooner - I hope to be home on Friday, and will get a note on here to let you know everything is over!
All prayers and good thoughts gratefully accepted
Geri
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Geri, good luck tomorrow
Lena, great to hear from you and I love your story. Please tell us another.
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Hi all, how are you all doing today? Lena, thanks for the story. Keep them coming!
Geri - thinking of you alot today!!!
Hugs to all for a good day, Judy xxx
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Hi all, just passing through.
Geri - let us know how you are when you can get to the computer.
Hugs to all for a good night!
Judy xxx
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I have my last Herceptin treatment tomorrow!
What a year!
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Woo hoo Alaina! yes..it has been quite a year hasn't it? The only good thing has been meeting all of you! I feel like I have a ton of new friends....and I like it!
Hope to hear from you soon Geri!
Happy Easter to all of you! I am not an overly religious person but I really enjoy the peace that Easter seems to bring and the renewal of life....hopefully we all get a renewal for a truly good year...compared to one year ago...well..we are still here and that is something!
My "babies" are home for Easter spring..doing tons and tons of laundry...I didn't know my son had that many clothes! Waiting for the last load to dry then I can go to bed..short day at work tomorrow..I'm taking my DD to the doctor...she has a couple of lumps in her neck..and I'm going with her and sit until they DO SOMETHING! Her thyroid number is high also...I think that she freaks more because of what happened to me..I really hate that
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Lena...great story! I'm glad Pack Rat is back and hope your platelets respond soon.
Titan - I worked through chemo too. I made more mistakes and pretty much had to re-do all my work this fall...so in the long run it wasn't such a great idea. TG for my boss and assistant....they totally covered for me.
Geri - I'm sending you good thoughts.
Alaina- Congrats!
I finally got a hair cut that I think is kinda cute. I've really struggled with curls and the ole lady... bad perm... mullet... grow out look. Truly, I handled bald better than the past few months of hair growth.
I'm happy to report on the flaming boob front I think I'm finally beginning to turn a corner. It's been almost a week since I stopped antibiotics and I haven't swelled much and haven't turned red and hot. I'm going in on Monday for my first PT appt. I can't believe it's almost been a year since I started chemo, it feels like yesterday. This weekend last year I was recovering from having my port put in...that's when I went online and found this forum.
Titan - good luck with your dd tomorrow.
Happy Easter everyone!
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Alaina - Congratulations! My last Herceptin is next Thursday. I am so happy for you (and for me).
Yes, it has been quite a year. I always say the days go by slowly but the months fly. The days when I was in pain or afraid just seemed never ending, but then when I look back, it is amazing a whole year is gone. I definitely feel stronger and more resilient from going through this experience, BUT I still wish it never happened - to any of us!
Have a wonderful holiday everyone.
Amy
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Alaina - Congrats! So pleased for you!
Titan - Enjoy having everyone home! Hope all is well with your daughter tomorrow!
Betsy - I am pleased that you are turning a corner, hope you feel much better!
Geri - I am thinking about you!
Dawn - Still missing you!!!
Hugs to all for a Happy Easter! Judy xxx
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Hey all, I am responding to your "shout outs"! Even though I have posted very little this last year, I have been pretty faithful to follow all of your postings, and feel like I know you all.
You have been an inspiration and encouragement to the rest of us who may not comment much, but find our own struggles & feelings reflected in what you have to say. It was all of you I went to when I was struggling with chemo side-effects, or post surgery discomfort, or when to "ditch the wig".... I am thankful for you all.
Obviously this has been a tough year for us, but I am thankful for a new appreciation of life, the strength I have gained, and a renewed faith in my God.
Happy Easter, here's to Spring and new life!
Linda
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Hi everyone,
Just a short one to let you know I'm home...they kept me another noght due to a skin change they didn't like, but it hasn't gotten worse, so I'm home - sore, but home.
Will write more when I'm feeling better
Thanks for all you good wishes
Geri
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Linda..so good to hear from you and know that things are going Ok with you!
Geri...glad you are home..that is the best place to be!
Judy..my DD has hypothyroidism...she is going to be taking synthroid to bring her numbers down...she has gained some weight so hopefully this will help with that..she wants to be skinny for her wedding! We looked at bridal gowns and mom's dressing yesterday....The gowns are beautiful, the mom's dresses are not...why does the mother of the bride have to look old? My dd will look beautiful though! And that is the most important thing. I also asked the doctor if thyroid problems had any connection to breast cancer...he said not that he knows of...I want to research into this a little though...
Have a great Easter everyone...enjoy some chocolate bunnies!
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Linda - good to hear from you and that things are going well for you!
Geri - thanks for letting us know that you are home. Rest up and hope you have a quick and easy recovery!
Titan - Good to hear that your daugher is ok and her issues are under control. Enjoy shopping for dresses. I say go out and buy yourself something outragous! You deserve it! I am sure your daughter will look wonderful and that you will find the true meaning of love and celebration at her wedding!!!
Hope everyone has a happy Easter!!
Hugs to all, Judy xxx
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Ahh Judy...you just really know how to make everyone feel good! I bet your husband and children are so well loved..I hope they appreciate you..I know I do!
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Thanks Titan - you are very kind. I really feel such a connection with everyone here, it is amazing as we have never actually met!
Hope you are enjoying the holiday weekend everyone!
Geri - hope you are feeling good today.
Hugs to all, Judy xxx
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Geri..how are things? Here's hoping you are doing well and was able to eat some chocolate! You deserve it!
Judy..I'm not kind..just telling the truth...
I think it would be hysterical if we all met...we would have so much fun
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Hi All,
Geri...I'm glad you are home recuperating! Take is slow...I'm still on for that cyber martini night.
I just got back from my first PT appt. The dx is truncal lymphedema and RIF (radiation induced fibrosis). The therapy was great. She gave me a number of stretching exercises and said I was not to feel pain...if I did I was pushing too hard. I also have to start wearing a compression bra and some type of body armor (that's what I envision anyway) at night. I have to go twice a week until the swelling goes down for a massage of the tissue. My shoulder and thoracic spine is also involved so she plans to work on those areas also. I really like her approach and she was very reassuring. She said I do not have lymphedema of the arm...my response...about time I heard some GOOD News! It made my day.
Titan - I'm glad they were able to diagnose your dd's problem so quickly. Hopefully they found it early and she can get a handle on it soon. I'm with Judy...don't settle for a frumpy dress. Go for it girl...get something that makes you feel beautiful.
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Had to check in and see how Geri was doing after her surgery....
Also to mention that I had my oncologist appointment yesterday..yes, more Lovenox injections but he started me on Coumadin, he wants to tide me over from the Lovenox to the Coumadin.
And...while he apparently has no idea why I got these stiff joints in the last couple weeks, he said that in light of that, he would prescribe Femara for me instead of Arimidex. So as of last night I started taking both Coumadin and Femara.
Lastly -- I don't have much time to post right now because the cancer center transportation van will be here soon to pick me up for my Lovenox injection -- but I THINK I'll actually be going topless, and I feel so stressed out and "traumatized."
I'll have to come back later today (like after the injection, after lunch, and once I start the laundry) and post more to really catch up with you all and let you know if I actually DID go out topless, though, as the van will be here any moment.
~Lena.
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GO LENA! GO LENA! GO LENA!!! You can do it. And no one will bat an eye. Really.
Let us know howeverything went. We are cheering you on!
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Lena - good luck! You do what you feel works for you! I am with Amy on that!
Betsy - I am so pleased that you have found a PT that seems to know what she is talking about. Good luck!
Geri - Hope you are feeling better every day.
Titan and Helen - sending you both hugs as usual.
Hugs to everyone else and have a wonderful day! Judy xxx
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OK, I'm back...I had my injection, ate lunch/finished watching that episode of Babylon 5 and started the laundry. Time to end the suspense...
Yes, I did it. I went out topless. :::::BLUSH:::::
Amy -- you were PARTLY right: nobody batted an eye -- EXCEPT the people who KNEW me!! :-O And those who did, um...well...it could almost have been a chorus of all YOUR voices in here when you were all telling me to go topless months ago because you were all convinced I must look totally gorgeous. I mean ALL the chemo nurses actually came out from behind the big desk to gawk at me, affectionately squeeze my arm and tell me how wonderful I looked (including "ten years younger!") and what beautiful hair I have and how I should keep it this way but maybe get it a little styled if I want! :-O :::faint::: Then when I got home I ran into my next door neighbor's niece who gasps and says, "Oh wow, you cut your hair!" -- to which I replied "Well, everybody makes mistakes!" and she said "It looks cute!"
OMG where in the hell is this disparity coming from where what *I* think is ugly (me, the way I look presently) is what EVERYBODY ELSE thinks is beautiful?! I mean every time I look in the mirror and see myself in this horrible short hair I see nothing but ugliness, which, ironically, was what finally kicked me over to the "OK go topless" decision --
Yesterday when I got home from the oncologist, I went for a walk to the pharmacy to drop off my prescriptions for the Femara and Coumadin. So I'm walking, and I happened to catch a glimpse of my reflection in one of the store windows. Yes, I had my wig on, but what did I see? An old ugly fat lady! I saw that and realized (once I got the emotions under control -- I wanted to burst into tears and came damn close) -- I'm an ugly old lady anyway, who in the hell do I think I'm fooling thinking the pretty long haired wig is making ME look young and pretty when it ain't? So I tell myself, well, I'm still a fat ugly old lady whether I wear the wig or not, and since the weather is getting too warm to wear a wig anyway, I may as well simply accept the fact that I'm an ugly fat old lady and at least be physically more comfortable.
So I MOSTLY decided it yesterday evening, but was chickening out for a bit this morning and wasn't 100% sure I'd go out topless as of today, like right up till practically the last minute (seeing the cancer center's van out the window, which was about 5 minutes after my last post).
OK...one more story -- well how about the one I told my Pack Rat while he was here over the weekend? (Yes, us rats were in plenty of heat and had daily doses of healthy, blisteringly hot SEX!)...oh wait, Geri requested my "Dr. Demento" story (which, by the way, I told my Pack Rat's family at his aunt's Thanksgiving dinner table)....so I'll tell that one. Well then...um, one more thing before I start -- don't say I didn't warn you about language when you see the F-word...
This incident happened during my junior year of high school, in June, soon after my 17th birthday, the last week of classes before final exams and then summer vacation -- every course now was in "review for final exam" mode instead of lectures of new material. It was after lunch, time for psychology class. Yes, I said psychology class..heh heh heh, which is why Dr. Demento was the first thing that came to my twisted young mind...
...Important: The desks in this classroom were laid out in a U-shape, not rows...let's see...
---------------Front of room/blackboard------------
--teacher's desk--
-door between classroom and hallway
s s *(my desk was here in front)
t t
u u
d d
e e
n n
t t
d d
e e
s s
k k
s s
-----------------more student desks back here ----------------------
OK, hope I was able to describe that OK, it's important... SO...
I walk into the classroom, it's early. Even though it's review for final exams week, I carried no such items as textbooks, a notebook, pad, paper, or even a pencil or pen. Further, it's a beautiful SUMMER day, and I'm wearing a halter top, shorts (hey! at 5'6 115-120 pounds, I was almost a real live hottie back then AND I had long hair halfway down my back!) and I'm barefoot. Feet are filthy too, since I didn't have any shoes WITH me even. I'm early, though -- Mr. Beron is sitting at his desk, and maybe two students in the back -- no one else was there. At first, I sit down quietly at my desk like an otherwise normal person, but then I get the Dr. Demento idea. I stand up and begin to softly sing...
"They're coming to take me away, ha-ha!
They're coming to take me away, ha-ha!"
The two kids in back are actually apparently studying, though they look up at me for a moment, then back at to their books. However, the teacher, Mr. Beron looks up. Our eyes meet. Emboldened, I grin at him and get up so I'm standing ON my desk, and once again I sing, loud enough for all to hear,
"They're coming to take me away, ha-ha!
They're coming to take me away, ha-ha!"
And I begin walking/skipping on top of the desks heading to the back row making up the "U," still singing...
"...They're coming to take me away ha-ha, ho-ho, hee-hee, ha-ha
To the Funny Farm, where life is beautiful all the time,
and I'll be happy to see those nice young men in their clean white coats,
and they're coming to TAKE ME AWAY! ha-ha!"
Until I get to the last desk in the top row, then continue back down the "U" all the way to Mr. Beron's desk (whose eyes are wide, jaw lowered), and I'm still singing...
"They're coming to take me away, ha-ha, ho-ho, hee-hee, ha-ha!
They're coming to take me away,ha-ha, ho-ho, hee-hee, ha-ha, to the Happy Home,
with trees and flowers and chirping brids and basket weaver who sit and smile and twiddle their thumbs and toes and They're Coming To Take Me Away ha-ha!"
I am now standing ON Mr. Beron's desk. He says, "Get down from there. NOW." I immediately reply, "Make me." Without a word, he stands up, grabs me by my lower arms and pulls me down off the desk. I fall to the floor in a heap -- and burst out laughing like a maniac. I get up, and then I see all the rest of my classmates crowded at the doorway as if they're scared to come in. I went into immediate "straight-face" mode, picked myself up and brushed myself off as though nothing happened, looked at THEM and said, "What the fuck are YOU all staring at?" -- and took my seat like an otherwise normal person. The other students came in, sat down and opened their books/notebooks.
I waited for everyone to settle in, and for Mr. Beron to start class. I even let him teach for maybe ten minutes, too. Then -- I REPEATED the ENTIRE performance I already described, except THIS time, as I sang and walked/skipped dirty-barefooted over the desks, I kicked all the notebooks and papers off to the floor, and, when once again standing on Mr. Beron's desk, having made my way around the "U" and I told him, "Make me," when he said to get down, he actually pulled me over his shoulders and carried me out of the classroom as if I was a sack of potatoes -- and I began to scream at the top of my lungs,
"RAPE! RAPE! RAPE!"
See how much FUN I used to be when I was young, and why I say I'm so boring NOW?
Well, have fun and feel good, everyone. Don't do anything I wouldn't....
~Lena.
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Lena - LOL! Thanks for that! And well done on going out topless! You know, we all have issues with our self image - how can we not??? But I bet you are so beautiful - why not post us a photo?
Take care all and have a good evening, Judy xxx
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Lena - I am honored to have you share the Dr. Dimento story! Only you could have pulled that off not once, but TWICE! Now, when is the book coming out? Will the jacket photo be the "real Lena", or who you imagine her to be (rewind to walking down the street looking in the window....) I guess we all "see you" as this irreverent, hard headed, soft hearted Lena - certainly not whom you describe.
As for me, I went to the p/s today - he redressed the chest after he removed the drains, and although I still have pain when I move in certain ways, it is much better without the drains. I still can't shower, because he wants the compression continuous, so the implant on the the "leaky" side doesn't get a chance to ride up. Sometimes these visions of what we worry about now are funny - boobs taking off and having to bind them into place, leaks, sizes (he proudly tells me he made me a c cup - I really don't care, I just wanted clothes hangers, but he thinks I should be thrilled with a c - typical male, always wanting bigger...for them or us? haha)
Betsy - your PT sounds very knowlegable - I had trunkal edema also with no arm involvement, and after a few sessions of PT it felt much better, and then she taught me to do massage myself, which also helped.
Helen, Titan, Judy - thanks for all the support, and Lena - thanks for telling me Dr. Dimento story and I hope you are feeling freedom from going topless - when you read everyones posts you can see how happy we all are for you.
Geri
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- 11 Info & Resources for New Patients & Members From the Team