Facing the Future
Comments
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Janis & Diane---You make me know I am not alone---I feel good after reading your posts.... Thank you & hugs
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I love Japanese Janis, make sure and have a glass of Plum Wine!
You know you hear people say he/she was terminal and the family had time to prepare? That really spooks me now. Is that what our DH, friends and family are already starting to do? Not like they realize they are doing it, but detaching in some way to protect themselves for the inevitable? Sometimes when people act sad around me I want to say, Please, wait, I'm not dead yet! LOL
I saw a therapist a couple of times who basically told me to stop worrying about other peoples (non bc) feelings when responding to questions or comments they make that I find insensitive or stupid. His suggestion was to go ahead and respond with what you are thinking instead of just getting my feelings hurt. A friend recently used the "none of us know our time, we could get hit by a bus tomorrow" bullcrap and I said "Yeah you are right. My point is I have the damn bus to worry about along with knowing I am standing in the middle of the road and I can see it turning the corner". She finally got it when I told her dying like that sounded delightful to me. haha
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One question, Is plum wine over 14% alcohol? LMAO...
I have been thinking a lot about what someone wrote.. We have time to greive our own deaths. That is really a big part of it isn't it? (besides the horrible 'treatments and pains we endure). We get to know early what is going to get us in the end.
I remember a movie in which there was a cyclops.(Some conan type of movie) They (Cyclops) had this incredible gift to predict the future. The only bad part was that they knew when and how they were going to die. Are we not like that just a bit/
Okay...off to read facebook..
Oh, one more thing...I had a little bit of wine Thursday night, feeling good..sent a note to my EX-DH asking him if he ever cheated on me when we were married. One of the 'just want to know before I go" type of questions.
he said no. he said that he if finally dating a nice lady who was as wonderful as I was. (my first marriage is another story!)
Janis
potlicker ready to party!
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OMG Marsha! My sister keeps saying that---or, "I could die in my sleep tonight!" I told her the difference is-the bus has my name on it & will jump the curb to get me (& it's an express bus!) & that either was preferable to what is likely!! LOL
I musts admit that sometimes I get PO'd at the thoughtless things ppl say. A couple of years ago I ran into an old pastor at a gathering. Unfortunately for him, HE was the 1000th person to say "But you LOOK good!" I responded by asking if he & everyone else expected me to have weeping sores on my face...poor man! He still sends a Christmas card..god bless him! LOL
Be well & stay strong
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I know my oldest ds seems to have pulled away more than the average teenager...but who knows if he wouldn't have done the same if I hadn't been dx'ed?
Thanks for the prayers for DS's auditions. There were 4 open spots. He is #5...and heartbroken. It's gonna be a rough weekend...
Oh, boy...the "You look good!" comments!! My pastor's wife always comments on my "color". I always just politely thank her (I AM in church when she says it, after all!), but I'm thinking, "Yeah...and it only took 45 minutes and a plethora of cosmetics to get me that way!" Isn't that what people say at funerals? "Gee, uncle George looks so good!...His color looks great..." UGH
I think that we are not only "pre-grieving" our own deaths, but we grieve every time a little piece of our "normal" gets stripped from us. First, it was the breast...then the hormones and any hope of a return to our sex lives...then the pain decreasing mobility, the fatigue, the hair falling...I hardly remember what life was like before cancer and it was only 3 years ago that I was dx'ed.I've just joined facebook and reconnected with some friends I haven't seen or talked to since high school. I spent a good little while feeling sorry for myself, realizing that they have these "normal" lives going on and here I am--fat, bald, feet so numb I can't drive and can hardly walk, so tired I stay in bed nearly 24/7. They want to know what I've been "up to"....well, feeling like sh*#$ and living from onc visit to onc visit if you want to know the truth. Ain't I just a little ray of sunshine, huh?
I'm just praying really hard that my PET shows me stable so I can go back to hormonals, if only for a month or two. I need a chance to regroup and regain a little energy; I need to get back into life for a while! It's like a neverending marathon...and I've never liked running.
(((HUGS)))
Diane
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Wow, miss 2 days and there's a novel to read.....
Whoa, you have given me lots to thnk about on the hubby side.
Will post after I thought about this...
Just a thought for the password, I like being able to log on once and not worry. I found this link by accident and I am glad I did, :}
As far as the looking good comment, I HATE that !!!! I always want to say that what did you expect, death warmed over.....
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Here is the remedy I accidentally stumbled onto in response to: You look good!
"So do YOU!" It never fails to disarm the person! It refocuses the conversation on them & they don't expect it. Frankly I think some ppl are thinking exactly what I was when they said it to me:
WHAT?? You think I look GOOD?? Are you blind? Do I really look that bad?
You get the picture....LOL
..and it happens in church more than ANYWHERE else! Hahahah
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What is it about church? People tend to insert foot more there then anywhere else. That's where I have heard the "Oh wow, you are so lucky, I had cancer 25 years ago (removed a small lump and then rads) and the new chemos are so much easier." Easier then what? A room full of mustard gas?lol
I really miss church tho, because of the low blood counts, I can;t go yet...too many people come sick....lol...
randie
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As we are talking about death and all; any one get "prognosis" or, for lack of better term, estimate from their onc? Mine won't say anything, just take it as it comes, so far I am responding well and that bodes well for the future.
I try really hard not to think about that part, try to live in the moment, enjoying my family and hopefully creating great memories; slowly, piece by piece I have been sorting boxes and clearing out the junk. Like I am getting everything straightened out and organized, just in case.
I worry most about how it will be, not the actual dying, but leading up to that...pain, being bedridden, able to feed and care for myself...that kind of stuff. Who will be there to help my dh thru all the after death decisions and stuff.
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Hugs Randie---Your post made me LOL....maybe it happens more at church cuz the ppl there tend to care more openly? Doesn't make it appropriate!
I went to church anyway--just sat in back BEHIND the sickies & left b4 they could swamp me with their germs!
Germ-free hugs! (no mustard gas either!)
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Ahh Diane----I never asked & I don't think my onc would answer except to say he has no way of knowing! I don't think he expected me to still be here NOW! I would not want to know what "patients with similar dx had for prognosis" either. I MIGHT believe it & die b4 my time! Dr Bernie Segal wrote in his book that some ppl believe the docs so strongly that they do die-almost to the day of their estimate!
I think a good onc has had enough experience to know that patients are ppl-not statistics & we always can surprise them! SO we WILL! HUGS
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Like you EWB, I haven't asked for a prognosis-I really don't want to know. I feel relatively well at the moment, and find that focusing on a future I won't have is just too upsetting. I was diagnosed, Nov 2007, and really didn't expect to see Xmas 2008...but I did. As yet, I haven't started the decluttering etc-and don't want to plan my funeral. I wonder if that's something best left for those left behind? I want it to be a comfort for them-if possible-so maybe they are the ones who should choose how to say goodbye?
I'm more fearful of the last stage-will I be aware of much, etc. I'm petrified of becoming incontinent, for example. I have decided-I think!-that I would prefer to spend my last days in the hospice, rather than at home. Had you asked me pre mets disagnosis, I would have said that I'd prefer to die at home-but now I'm facing that reality, I think hospice will be best for me. I can't bear the thought of the love of my life having to deal with sleeping in the bed in which I died. I want to protect him so much, and I'm so angry that there's so little I can do to achieve this.
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I have asked myself similar questions. I want the room that I am currently occupying at night to be the place where I lived. I do not want family looking at the door and thinking that that was where I died. I researched different hospital palliative units and selected 3. All of them have a wonderful attitude but one just made me sad. The one I chose as the #1 will allow my cat to visit. They do not know how comforting that would be.
I have been told that barring the bus scenario I will die in a hospital bed, heavily drugged. I will most likely be wearing a diaper but will not soil it as not enough fluids or solids going in to cause anything to come out. My therapist says that I will be surrounded by family and friends and my care will from them and the nurses. I should feel more loved than any other time in my life.
There is a website called The Canadian Virtual Hospice and it will answer a number of your questions about your physical being - what to look for and what to expect. If you need a Canadian postal code - use mine M4B 3N3.
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I know what you mean about wanting to protect your family and kids. I bounce back and forth between the die at home and die elsewhere issue. My daughter and I were discussing ghosts the other day. She asked me out of the blue if I believed in them, and I said no, because I don't. I asked her, and she said she did.
Only later it occurred to me that this might be another reason not to die at home. It is likely my dh and kids will be here for a while. I don't want the place that is supposed to be a refuge to become a place of fear. It is so impossible to get inside their heads, and do we ever know what anyone else is really thinking?
Diane, your welcome about the link I posted. Sorry I didn't get back sooner. Have been going through the blackness lately, and not in the mood to post. Good luck to your son this weekend.
Have a great weekend everyone.
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Exactly my thoughts Pookie. Our kids are older and have homes of their own, so it will just be hubby left here (fortunately the kids are only a few minutes away, and as we're a very close family, I know they'll all look out for each other). But I want our "home" memories to be as happy as possible-I can't bear to think of our home becoming like a hospital ward. It's enough that I have a cupbboard full of meds!
I had the option, before starting on herceptin, of having the infusions at home-and I declined Again, the thought of my refuge and haven becoming even temporarily a base for teatment, had me in tears.
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HUGS-I'm remembering being at home after loosing a loved pet. There wasn't a spot that didn't make me think of them & miss them-I guess I have spent so much time "being sick" here that there won't be a spot they won't look at & remember SOMETHING about me, either...sigh-----guess it could matter WHERE I am when the time comes.......it MIGHT give dh comfort to sleep where I have practically LIVED for weeks/months at a time.......but not sure dying here would be a good idea---thanx AGAIN for helping me see another important issue I need to consider more deeply!
Be well & stay strong
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Hi ladies...
Just a quick note tonight, kind of tired...So many topics of interest, I could go on for ever, (well maybe not FOREVER LOl) I haven't really thought about where I want to be when I pass, but I can tell you that when I had my mother home in my home for the few days that she was there in a hospital bed in my family room, it didn't feel like a hospital room at all to ME.. I haven't asked my boys if it did for them though, it would be very interesting to me to ask them now...My older son would not go into the room while she wasn't awake at all, which was most of the time..I don't know if it bothered them that she died in our home either, I never asked..I think I went into "take charge" and make this the best , and last thing I could do for her...I never asked my husband either, it was my gift to my mother..I can tell you that it did not make me sad after wards either, I found so much comfort in that room. I think this will be a topic to come up soon with my family.. Thanks again for helping me realize the things I need to discuss with them..
And Dreamer, it was very much as you described, almost exactly.
I have never asked my onc. how long he thinks I have, I don't think he would tell me until it was close to the end, as with my mother....He couldn't even tell me when I was dx with my mets, he had his wife tell me.She cried telling me, I sniffled a bit, trying to process it...He is a wonderful man, but I think he gets attached to some of us more than he would like..I know he felt it when my mom passed... I'm seeing him Monday to go over some things, I may just ask him...
Have a peaceful weekend, talk to everyone soon. This is very helpful..Thanks again..KLynn xoxo
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OK--sometimes I wonder if I have a long fuse or I'm just slow on the uptake, but there are more threads springing up about the dust-up in the mets forum.....I am tiring of it all & just posted my last thought on the subject----it needs to die a natural death! Appropriate to this thread, no?? LOL
Dream (& all)-did you see my new boy on the bitch thread? He has been to the vet 2 times in the 3 days I've had him----hope he is going to recover cuz we just love him! If not, at least I gave him a home to stretch out in & not a tiny cage like the one he has lived in for the last 2-3 months! The commonly held attitude is that he should get better away from the shelter---I'm gonna do my best to get him there!
Hugs all---sleep deep & dream sweet!
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Yes I saw your cutie. Even responded re name.
I hope his health holds up. He looks like he deserves a loving home. But what cat doesnt (LOL)
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Sigh, very appropriate here Sainty, and it's taking all that I have in my New York Girl soul not to respond anymore to anyone about the stupid dust up thread. lol It's quite difficult for me, but I'm trying very, very hard . :-)
I never asked for a prognosis either....don't want to know, don't need to know......although I DO KNOW the statistics.....but I refuse to believe them. I love denial land......it's a pretty world.
Hubby and I told our kids when I found out I had Stage IV, what that meant, how there are bad like "bubbles in my body"......but we did not say the word "die". I don't think, for us, it's the right thing to do.....They are so young, let them love me, live life, and enjoy it all....and enjoy me. When the time comes that I have to tell them? Wow. I'll want a bunch of you all here with me to get through it, because as we've all said.....only "we" get it.
I hope your new boy keeps up his health ((((((Saint))))))))) you, my dear.....are a one in a million. Just wanted you to know that. :-) You make me smile.....:-)
On a humorous note this evening......since I'm so not in a joyous mood this weekend (hubby is going away til Wed for work, leaving tomorrow early a.m., this stupid fundraiser I am chairing, oh.my.god....I can't wait for it to be over on the 19th, its a nightmare, my girl Kayla's been sick, I'm cranky, tired, and the hotflashes are out of this HEMISPHERE tonight.......lol ty for letting me vent ;-)
Oh right......so back to the humorous note. Think I've read above how there are always friends or whomever that say "Well, you could get hit by a bus or truck tomorrow, ya know?!"......mmmmhmmmm well I actually KNOW SOMEONE that got HIT BY A TRUCK.......I wouldn't be making light of it at ALL, if she weren't completely OK, but the woman got NAILED by a truck and if she weren't so skinny? She may not be here to tell the tale! Under the TIRES but SQUEEZED out somehow in that kinda "nailed by a truck" way......wth??? Bending over getting GAS at a gas station nailed by a truck.......freaks me OUT!
BUT.....it happens. lol And I can now truly say when someone says to me about dying of cancer that "well you could also get hit by a TRUCK tomorrow too!".....
"I DO know someone!" lol
OK, on that note, gonna say goodnight.....hugs to you all, just so happy you're all here.
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Okay....so what is the matter with me ?????
What the heck is "dust up thread?' Kelly?????
I must be missing something...... KLynn xo
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WOW, I have sat here this evening reading all these posts and outpouring of emotions. I know I try to remain as upbeat and positive as I can. I guess that is my defense mechanism to all this. Then I read everyone discussing the issues of a sex life and if their husbands will move on and it brings even more tears to my eyes.
I have to fight this disease as hard as I can, so far I have been fortunate in that. But we all know how quickly that can change. My husband died in 1999, my bc dx was in 1998. When I was going thru chemo my husband, the love of my life, man of my dreams was crumbled by a mental illness. He had developed paranoid schzophrenia over the last few years of our marriage. Life in my home became very challenging as he kept talking about murder suicide plots involving our family. When he started hiding knives claiming I was trying to kill him I actually was afraid he would kill my children and me and made him go live with his family in MI. His family blames his death on me but I think I did the only thing to save my childrens lives!
Not only was I trying to complete chemo while I was telling my 4 children their father was dead, I had to complete the chemo and radiation. I also had a scare with a new lump on my scar within 6 months of tx. I didn't have the luxury of a board like this to find help. I sailed thru my last few years in life thinking I beat this thing when I got slammed with this damned disease again.
My biggest fear is who will raise my children? There is no longer a father and no one I really want or trust to complete raising them with the values I want them to have. I don't want a family member to take them because they have to and resent having them put a strain on their family. It is a very difficult situation for me to face. I guess I have chosen to try and not look at it yet but I sure wish I could rely on someone to care for them.
I feel the strong need and desire to push ahead no matter what the costs to me to fight this disease so that they can all get thru college and start their lives. I can't imagine turning 18 and having no parents left for me and to be that alone in this big scary world. that is what I worry about daily for my children. I guess I must maintain my strength to try and fight harder to make my goal.
I even said today that I can make peace with this desease and die from this if I know my kids have careers and can find a way to make it in this world. I have nothing worldly to leave them! My husband did not have life insurance and I had to work full time plus all these years to raise these kids. Now bumping down to disability makes life even more difficult to maintain in todays economy. I guess we all have so many things to worry about and fear. Right now my biggest fear is what will happen to my kids more so than what happens to me.
I guess reading all this allows me to put my fears out there in writing and realize them than hold them in. This damn disease sucks no matter how you look at it.
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Wow, looks like this topic has struck a nerve with all of us. I go back and forth on dying here or elsewhere...I am thinking on a cruise somewhere would be nicer :}. Then, if my husband ever does remarry he won;t be able to take the new woman EVER on a cruise without remembering that i died on the last one he took...lol..sorry, couldn't resist some dark humor!
Seriously, the fact that I died here would make it uncomfortable to LIVE here. I want my kids to see me in the house, sitting around, talking, laughing, being a mom to them. This dying crap is not the memory I want them to have...
As far as how long, with lung mets, the last pulmonologist told me 30 days to 1 year. Then my onc said BS, breast mets are much longer as much as 8 years. However, since I decided against chemo right now, I am not sure. I know I feel better then a month ago. So, I am leaving this up to God, I know that He is in control and nothing I do will change or extend my expiration date, so I am just enjoyin this time here. My kids don't know more then the cancer is back and I need to attack it a little more hard core this time. The 6 year old is the one I worry about the most. But then I see how in the last year the 17 year old has stepped up and i am not as concerned.
we have a 22 yo ds in the Army with is wife and baby, that's who gets them if both of us die. I think making sure the kids are okay is what we moms worry about the most.
thanks for starting this, it helps to get a different perspective from people that are in the same place...
randie
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LuAnnH
Your struggles are so much more intense than what i've had to go through. I think thats why you've come out so much more positive than myself. Everything looks like a small hurdle to you compared to what you've had to endure in the past. I can't imagine going through this without my husband but you have had to and I compliment you on how you managed it. I'm a needy person and without someone to sob to and explain my fears,, I'd be huddled in a corner sucking my thumb. You hang in there girl friend. I need your up beat outlook as I mentioned the other day. I'm learning from it I really am.
huggs
Lynn
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WOW!!!!!!!!! I just read through every single post on this thread & it's so nice to see that we're ok sharing this stuff. We do need to be able to get it out... and I feel better knowing that the things that go through my mind are going through other minds as well. I have laughed & cried my way through the posts... and I love all of you for being able to put yourselves out there. I need to get my thoughts together before adding anything, but had to at least say how much all of you have meant to me & how comforting it is to know we are all there together!
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I wanted to add to my post last night, I forgot to address my thoughts on where I die and what I want done afterward. I really want things to be as easy on my kids as possible and I hope to work everything out for them ahead of time. Although I've made no attempts to settle anything yet, but I do know I don't want to die in the house. My dad died in my house when I was a kid. My mom was freaking out having me hold him up while she was trying to get an ambulance. He died in the house and even though that was over 30 years ago I remember it clearly and that house has terrible memories in it. I want my kids to remember home as the warm loving place that it always was for them.
I am not going to be buried next to my husband, he is in Ft Custard National Cemetary in Michigan and they reserved a spot next to him for me if I want it. My oldest son who is in the military wants that plot so I am letting him have it. I don't have family in MI anyway so it doesn't make sense to me. I don't even know if I want to be buried, cremated or donating to science. I really just don't know the best answer for me but that is what I am thinking about. If I am buried it will probably be at a little cemetary near my home in Cincinnati. Feels weird though, your final resting place to be somewhere you have no real family, but does it matter. After a while nobody really shows up at the cemetary, so whats the point? Ok, lots of rambles but it does feel good to get this out.
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I'm tentatively thinking about having my ashes dug into the ground in my brother's grave-if this is possible? I just mean mixing me with the earth....(I always was one for playing in the mud!) He was a lovely little boy, very severely mentally handicapped, who died aged 6. He's the only close family member who has a grave.Why am I pondering on these things-would I not be best to let Brian and the kids do what they want to do......
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Maybe because this gives us some sense of control over our lives. Think about it, we control how we live and what we do and then cancer takes over. By controlling what happens afterwards is like telling this disease to "F" itself because we are still in control.
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Sneaking in and burying your ashes with your brother is a wonderful idea. Not legal. But who cares? My hubby is going to scatter me in a playground so I can have fun in my next life.
Remember to leave these ideas as suggestions. I would like.... but if that is not possible....
Better still discuss this verbally withy your hubby. I did and he surprised me in saying he did not want to keep my ashes in an urn for the rest of his life. What would the new girlfriend think? So we came up with the park idea.
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Ok I have been a good girl and not responded meanly to the other threads that are being a little snotty towards us and I really dont know why this thread is upsetting so many other posters.
One accused us of only discussing our fear of death. I was not able to really shotgun it out of the water... but did give them an outline of several topics that have come up.
I hope I defended this site adequately. I hope we can live peacefully with other friends.
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