March 2009 Rads Group?

As I read the posts apologizing for whining, I think, isn't it interesting that when men get sick and whine...and boy do they whine over the littlest thing, they don't apologize.  So here is my question to you...no answer required...are you by nature a whiner or are you pretty much a strong capable women who manages to, for the most part, handle anything that comes your way.  My take is you are all strong capable women...does that mean we need to be strong all the time...NO.  I know I am a strong capable women and I rarely whine, it's just not my nature...however, I certainly had my whining days...even if the whining was in my head while I put on a "I can handle this face".  Wonder if it is because I find it very difficult to accept help...gotta learn to get over that one!

I really found that the silverdine cream really is working wonders.  My skin is feeling so much better and is even starting to look better.  My skin breakdown started under my arm so that area is really starting to look so much better, the collar bone area went next and it is coming along nicely, then the area under my boob went south and I figure that it should be pretty much aok by the end of next week (I hope).  Certainly looking forward to being able to wear a bra again, not being able to certainly limits my fashion choices for work!

I had myself a little cry as I left the hospital after my last boost on Wed and I think it was tears of relief that this part of the journey was finally over.  Since then I have been feeling pretty good, still have the fatigue however, it is not overwhelming thank heaven. 

Wishing you all a great weekend.

Carol, I can answer about my whinability... I can not abide whiners.  I have zero patience with whiners, its a real bane of my existence.  I do have a rule about "bitching rights".  Long story shortER, in my 20s I had vaginal warts. I had been to my fancy gynecologist and was too prim to actually point to them, he didn't see them and dismissed me.  He sent me to a dermatologist.  The dermatologist saw them and said she can't treat them because they are gynecologicial, and she sent me to another gynecologist.  He saw them and treated them but somehow missed them and they were there again or still.  I was seeing a shrink then, and the shrink said he had had a patient who was raped and got them from the rapist, and had all kinds of horrible problems downline from them.  (Great shrink eh?)  Since I was the only one who could see them, I ended up at a gynecological oncologist who used a microscope to see them, and set me up for surgery to have several layers of my skin there lasered off.   Fun eh?  As with this, I called the office in advance to get the aftercare instructions (doncha love it when you are coming out of anesthesia and they hand you a fuzzy xerox telling you to use a sitz bath or some other common item and get a Rx filled - like you need to be going shopping and standing in line at a pharmacy now?  Like they couldn't have told you before?)  and I got the other doctor in his practice who said- everyone has viruses in their skin, if you can't see them, you are already in the "cure group" I don't know why you are having surgery.  So I canceled the surgery, and started to complain to my friend, who offered her own gynecologist to me.  I whined something like "I have seen 7 doctors for this already and I don't want to lift my skirt again!"  She said, well then that's fine but if you are not willing to do something about the problem, you lose your right to bitch about it.

So I made a rule for myself and my friends.  If you are doing something about the problem, I will stand by you and listen to you bitch about it, but if you are going to quit, or repeat the same behavior and expect different results, you lose your "bitching rights".  So that's my answer to your question.  I am not a whiner and I have zero tolerance for whiners- but, as long as you are in there fighting the good fight, I will be right beside ya, and bitching up a storm the whole way.  I do like to bitch.  I love to bitch and moan.  But not whine.  Oh and then I asked a friend who was becoming a doctor to search what was the equivalent of the web at the time, he found information on how to treat warts, I called a 1800 doctor referral service, didn't mention anything about the previous doctors, asked for the treatment i wanted, got treated, warts went away and never were a problem again 

Carol- that silverdine cream that is working- it works to heal, but not to stop pain, right?

Fatigue not so much a problem for me I think, it's just the pain from the burns and blisters.

I'll see my onc after my last RADS, so it's not going to really feel "over" I think.  Not unless he says what I hope he says: Take Tamox, get mammos and uterine checks every 6 months and See Ya.

I hope.

OK, kids up, boobs reslathered. 

Bride of Not-So-Young Frankenstein I was on Friday on my way out to RADS.  Surprised that I was in pain, it took forever to get wrapped up enough to function.  Even then I had my arm tucked in to keep the swatches under my arm in place, and wincing every so often as I walked, I really did feel I resembled Marty Feldman as Igor, hump and all.  Walk this way...

As I am finally getting out the door my nanny says disapprovingly, "You're late."

 I am sure I don't have to tell  you what I said next.

Hey guys!  Happy Saturday.  Okay, so this is weird, when I logged onto this board, a bunch of posting from April 29 show up that I never saw.  I thought:  Well, I posted last night and...  So, Nelia, your post especially from the 29th struck a chord with me.  I am also single, and where I live is a bit removed up a little mountain region in LA.  My immediate neighbors (all of them gay men) have been great throughout, but the majority of friends and family I hear from gets more and more intermittent.  There has been one person who actually makes a point to speak with me almost daily.  We dated years ago when we frst met (about 18 years?  yipes), but remained friendly after the break-up all these years.  He's been such a gift.  There has also been one female friend who has also just shown me what a fantastic person she is on so many levels.  These two people make me cry when I think of how lucky I am to have them in my life.  I try to focus on that whenever I get hit with the thoughts of trying to offer a recap to others who mean well, but seriously, how much do you really want to know "how I'm doing?"  Most people don't know how insulting that little poilitcal nicety of a question can feel when you're dealing with cancer.

Also, Nelia, I plan on reading your blog.  I'm kicking myself that I didn't see your post about it sooner.  But I did see it. 

Also, can I just say that as I read more and more from all of you, I keep thinking:  "This is me, too."  I can't believe how Rachel or Nelia or Renee or Bluedasher or EVERYONE has said something that is so spot on with what I've felt or thought or experienced.  All of my life, I've never been one of those 'Sex and the City" type gals who hang out with other women and do all the girls night out type of stuff.  And frankly, most of "girl talk" just bored me.  The same thing with gossip.  It just bores me.  I would rather be funny than than anything else.  I see bitching as an art form...sort of like in the original version of The Women.  When I do get up in a good rant, it's usually to see how far I can take it.  Same with my humor at times.  I get more enjoyment  in having a comment come out with perfect timing or word choice rather than actually trying to hurt anyone's feelings.  So, like Kathy Griffin...I'm a big hit with the gays.

I'm with you Rachel.  If you have a valid reason to bitch about something rather than more of the same, I'm there with ya and I'll offer you all the solace I can.  But I'm not the person you want to bore with repetition or self-indugent whining.  It's something I should be more tolerant of, but one of my buttons are people who bore me.  I mean, I'll do my part to to avoid being bored by someone as much as I can, but some people won't be denied.  And they had better have thick skin and a good sense of humor, because I will  make fun of them as my way of calling them out.

Also Rachel...you are getting such the best end of the stick on Mother's Day.  I don't know your family, but it just feels to me that your not being with them so much right now is a better thing for you.  Your step mom sort of reminds me why I've never been a big fan of other women.  This is also why this place has been such an oasis.  Think about it.  We have never met, have one awful thing in common that most people are afraid to even be associated with...and as a result, I have never come across such a group of intelligent, compassionate, sharing, interesting, strong, enduring people in my life.

I'm in abit of a funk today...keep going in and out of it.  I know it's becasue I'm going out to a friend's housewarming party.  It's the first social thing at night that I've felt up to doing (killed me to cancel on a piano concert  by Lang Lang at Disney Hall), but I'm a bit apprehensive.  Everyone who'll be there knows of my cancer either from me directly or indirectly...but for the most part, no one there is someone I consider to have "gotten it."  Well, maybe that's not entirely true.  But I'm...well, I've been in a funk today about it.  Don't want to ignore the issue, but I don't want to play catch up and watch as people's glass over...also don't want my eyes to glass over in trying to be polite with inquiries that could have been made over the past six months.  And if someone says that I'm an inspiration or strong and brave blah blah blah...  Dn't know why, but those thoughts do NOTHING for me.  I don't want to be anyone's role model on this.  I understand what they mean and why they say it...but it bugs me just the same.

Okay, Im laughing because it occurs to me that I end up talking myself out of going to parties like this with or without breast cancer.  Isn't tha awful?  And it's always during that last hour before I have to go.  I better log off, because it's 6:20, and the thing starts at 7.  Jeez, what is wrong with me?

Catherine

Catherine wrote: "All of my life, I've never been one of those 'Sex and the City" type gals who hang out with other women and do all the girls night out type of stuff."

I was always wishing I had gals to talk to like that. 

"And frankly, most of "girl talk" just bored me.  "

Amen sister 

 "one of my buttons are people who bore me "

and mine.  Keith Richards said "It takes a boring person to be bored".   

 " I have never come across such a group of intelligent, compassionate, sharing, interesting, strong, enduring people in my life."

 Yeah, I was noticing that.  Like is on the frikin list for risk factors or something?  Joining the thread I felt like (and still somewhat do) that I should censor myself, because I haven't really read the terms of service and boy oh boy to expletives jump to mind every second of this... (I had a saying that expletives were used by people who were too lazy to use their vocabulary... now I will add or are too damn tired from cancer treatments to abridge what they saying, or for that matter remember what they were saying, what?  Oh right.  Well when I read Martha's page and saw she was a minister I thought I better watch what I say here, like I am in church.

"killed me to cancel on a piano concert  by Lang Lang at Disney Hall "

Another really good point imho, the things i have had to cancel for this... Passover, meeting up wtih friends I haven't seen in years, Easter, kid events- there's even things I am putting off teaching the kid, and each one of those things I resent giving up to cancer and feels like failure, not being able to make and keep commitments... my roots are growing in, twice now I have had to cancel with my colorist, and yes, each time of course i know these things are nothing compared to doing what needs to be done to save my life... and then like today, a lovely May day, I would have loved to be out with my son- but I was already economizing on how many times I would have to pick him up or change him.  All these things, hurt to give up. 

 "if someone says that I'm an inspiration or strong and brave blah blah blah...  "

seriously.  the mommies I have been thanking keep saying I am the "inspriation"  What did I do that was so inspiring, fail my mammogram?  survive outpatient surgery?  maybe my fighting with the doctors and stuff- but they dont know about that... or want to hear... even the radiation tech one day trying to be helpful said something about all I have to do is fight the cancer and I said when I go home, exactly what am I doing to fight cancer?  Is there something I could be doing someone forgot to tell me?   

"Im laughing because it occurs to me that I end up talking myself out of going to parties like this with or without breast cancer.  Isn't tha awful? "

We have waaaay too much in common. 

Martha- "found they didn't really want to hear the truth, they wanted to hear that I was dealing with whatever was wrong "

AMEN SISTER, Uh Minister, Your eminence,  

oh yeah about how about them wanting to hear I somehow did something "wrong" like not having a regular mammogram or have lots of family members with breast cancer or living on top of a cell phone tower or something to get cancer.  OR HOW ABOUT FRIENDS WHO SMOKE CIGARETTES?  I actually dont have many friends who smoke cigarettes. I have made several people quit.  It takes self restraint not to walk up to strangers on the street and scream at them, especially the kids.

"that's not the sort of thing I would tell the church members anyway ..."

HOWL!

" it's not like I'm special or anything. It's just that there isn't really much choice--"

AMEN! 

I" Maybe there are people who collapse etc.. "

That would be me.  I cop to that totally.  I kept saying "I'm sorry, I am not handling this very well" and they'd say, "Nobody does."

Then again, I have met some people who are handling things so well- like 2 gals I met at radiation.  And all of you.  

Hey CHER, I checked out your profile and understand this is a recurrence for you since 2005.  Well that sure stinks.  Since the tumor is behind an implant, you're the first like that I know of, and I don't know if its the same bag of fun that most of us have done.

FWIW- here's what I wish I knew before I started:

You're going to need some bras and some shirts you can sacrifice, either to creams and potions or to ink markings.  If they are underwire bras, you'll probably want to pull the wire out- unless you can go bra less. At the end of treatment you will want dark shirts that wont mind ink stains.

The areas that are most likely to hurt from burns and blisters are any place you have skin- on- skin (and remember those places are different when you lie down to sleep than when you stand up) like underarm and under boob and between boobs, and any place that rubs, and any place that gets missed when you are slathering on creams.

I *think* we are basically agreed that you want to use pure aloe and calendula cream.  If and when it gets bad you'll want these petroleum antibiotic bandages and covers, and finally you will want the silver sulfadine cream- which is limited in how you can use it.  Some gals found the silver sulfadine cream easier to use by putting the cream on a bandage first, then applying the bandage with the cream already spread on it.  Be aware that your skin will probably come off with the silver sulfadine. Advil is the pain med of choice, stopping inflamation and possibly easier on yoru stomach.

Get a surgical pen for them to mark you up with instead of the sharpies they generally use.  Sharpies are not FDA approved for use on the skin, of course surgical pens are.

In my case, i was able to get fluorescent tattoos instead of little black specks.  Fluorescent means they dont show in nornal light.

Cut a soft t shirt into LARGE swaths to cover your skin when you have the creams on, and if you collect boob sweat, use swaths instead of any kind of powder, or even corn starch.

If and when they get to boosts and want an outline drawn on your body for their beam, see if they can use smaller marks, just to minimize the ink mess for you.

I found vests useful. 

The fatigue is weird, and all the symptoms are weird in that they are not exactly consistent- at least for me.  I'd be great one day, crap the next, great again, and now at the end its really crappy burns for 5 days.

At my center I can bring my own music during treatments, nice people both patients and techs.

I also wear my fancy velvet gloves to hold the handle bar during treatments, partially because  I dont like the idea of grabbing a bar that may have other peoples cooties on them, and partically because its kinda funny and fun 

It doesn't hurt or anything during the treatments, but its really weird especially if you think about what they are doing.

As much as it can burn and blister and all that - and some people it just DOESN'T, they have no problem like this- it seems that once it starts to clear up it happens really fast (or seems to) .

Me, personally, I am waiting and hoping for that last part.

CHER, if I may ask you, your profile said you gave up on hormones after 3 years due to SEs.  Which hormones were you on and which SEs bothered you?

Really very sorry you found yourself back here, but welcome  

It was so good to read everyone's posts this morning!  Sounds like it was a busy evening after I flopped into bed!  Should have stayed up!  Still can't sleep on my side as my ribs are killing me!

I do have to agree with everyone about the "how ya doin'?" questions that no one wants an answer to.  In fact, I think I quit asking MYSELF the question!!!!!  No wonder no one really knows anything about any kind of cancer and how patients deal with it.  I noticed the first day at the cancer center that in the waiting room, no one even made eye contact, no less talked to each other.  I found it the most horrible place to be.  I wanted just ONE person to make eye contact with me and tell me it was going to be ok!

I don't mean to sound like I'm in a self-pity thing here, but I have found that now that I'm done with my treatments, people think I'm "all better."  Maybe that's because in most diseases, when you are done, you are well.  No one wants me to talk about it anymore, as "I'm dwelling on the past."  Little do they know that I feel more tired and out of energy now than when they were bringing me meals during chemo, etc.  I hate to tell them, it's not over, and probably never will be.  I can't sleep at night, then I'm tired all day, my arm is always killing me (the surgeon had to cut a nerve in order to remove a node that had wrapped itself around the nerve), and I can't seem to find a life anymore.  It moved on without me.  So it doesn't leave me much to talk about with people.  There seems to be two extremes -- those who think I'm totally well and passed cancer, and those who think I'm in denial and that I'm really going to die soon because it always comes back.

Rachel, I loved your list of what you learned about radiation! One thing I learned very well was how to count to 12.  That was how long I was zapped on the table each day for each treatment.  I always had this panic attack that it would get stuck and wouldn't shut off, so I counted every time!

I also wish I had had more of the men's tee shirts.  Tight ones.  They were great for holding the bandages in place with the cream.  Loose ones just rubbed and hurt a lot!

Rachel, I think you should sneak into the April and May group and post your list there for the up and coming gals having radiation.  It would help them a lot!!!!

While I was getting the boosts, they seemed to be doing very little, but Saturday, 5 days after they ended, the area that was getting the boosts is reddish while the area outside the boost has gone back to regular skin color. In a way, it is a bit reassuring because it seemed like the boosts weren't doing much, but I hope it doesn't get much worse since I'm still in the "7 to 10 days until peak".

Meanwhile, part of the really red area under my arm has turned brown and cracked. It is starting to peel and really stings when I put the aloe vera or moisturizer on. I hope this phase doesn't last too long. I'm getting some peeling around the areola too, but that doesn't sting - I guess the skin underneath is more ready.

I had a blood test (part of the monitoring because of Herceptin and the drug trial) and my red blood cells and hemoglobin were low - I've read that rads can do that though I haven't seen a good explanation of why. That may contribute to the fatigue some are feeling. 

Rachel, complaining about your roots showing when some of us barely have hair! I've got something between 1/4 and 1/2 inch to show for two months of growth post chemo.

My oncologist told me about the trial. I am hormone negative and not on hormone therapy. (If I was it would probably be AIs rather than Tamox because I'm post menopause.) Before the onc mentioned it, I also assumed that the bone building drugs were just for those on hormone therapy since they are used to counter the bone loss of hormone therapy drugs. However, the cancer recurrence prevention of these drugs may not be linked to having hormone positive cancer or hormone therapy. The trial doesn't require hormone therapy or hormone positive cancer. It just requires that the patient had a cancer advanced enough to need chemotherapy or hormone therapy.  I needed chemo so I qualify.

The website restricts new members to 5 posts a day because they have had trouble with spammers and some other bad actors. Once you are around for a week or two, that restriction goes away.

oh blue- not complaining about roots!  just feel bad having to keep letting people down, especially my colorist who put his job on the line asking a prominent client if her company would sponsor our Bake Sale for Cookies for Kids Cancer.  It was the letting people down, failing commitments part I meant, not the haircolor itself.

I know you would not wish it on me but I am in big trouble with these radiation burns.  Blisters now everywhere, the whole boob is incredibly red and pink, the nipple is raw- I don't know how I am going to get to radiation like this and I am going to have to ask the nannies to come in every day this week.

nothing hurts, no shooting pains, no rib pain, it's just- and there's no way to say this without being really gross so I am just going to say "terrible burns".  I am putting aloe and calendula with cotton about every 4 hours until midnight when I put the petroleum bandages and sleep for 6 hours before the petroleum bandages begin to hurt.

As far as my hair, I can't put both arms up, so I haven't been able to wash it or care for it since Wednesday last week, and today I held my boob in the shower and one arm soaped and washed my head, and thank heavens for leave in conditioners.  I am not complaining about having my hair for sure, or forgetting for a nanosecond what I didn't have to do in chemo.

It is what it is.  I am just one of those who doesn't do well with radiation no matter how prepared I was.  

This came on somewhat suddenly last Tuesday night, went away for Wednesday, then came back Thursday with a vengeance and I am currently not making any progress day to day for the better.  I am also eating hydrocodone just to stop from screaming every other second. 

I hope there is a way I can take the biphosphonates by mouth like you are blue.

Sue- I can certainly relate. 5 boosts left here, and I am not myself. 

Martha, congrats on finishing!  And I can't believe your story about the two women both having cancer.  I would have such a hard time coping if my partner were to get bc, or any cancer.  But, we do what we have to do I guess...just hope I won't be tested in that manner.

Rachel, sorry you are having such a tough time.  You are nearing the home stretch.

Nelia, I would call and ask about the rib pain.

I started on this train, and finished rads right before Easter.  I wasn't a consistent poster, b/c I had so few problems I felt like I should keep apologizing for that!  And I admit, I wasn't even very good about my lotions and creams.  I am pretty flat chested, and that helped I think.  Other than that, I agree Rachel - luck of the draw.  I didn't have terrible trouble with chemo either.

I am on Tamox - 2 weeks now - and having a little insomnia and tingling in fingers and toes.  I never got the tingling from Taxol, so think it's weird to be getting it now. 

Am also on Zometa - but just for osteopenia.  I get it every 6 mos.  I am intrigued by the study that gives it more often.  Would have liked to have gotten in on that!

Hope everyone is able to sleep well tonight -

Sam 

I finish my booster treatments this Wednesday..I can't wait!  I have had 37 total treatments, this time. And, I have had enough..I want my body back!  It really hasn't been that bad..I should consider myself lucky as I didn't have a lot of the problems that some have had.  I am suppose to start on Tamoxifen after I finish.  But, I don't think I will.  I am terrified of the side effects, especially of the possibility of uterine cancer.  That just doesn't appeal to me....Anyone else thinking of NOT taking Tamoxifen??????

Susie, I finished my treatments on the 15th of April, and it was about another week before I saw any improvement.  Then, it started healing up really fast.  Right now, it is all healed up except for one little scab about the size of a penny.  The rest is really light pink and doesn't hurt at all.  It will all end soon, believe me!!!!!

Well I had no idea I was stoic.  I thought I was a world class bitch whine and moaner.  I lost some of the bets with myself.  I learned

- I did a great job, the area is clean and correct and not infected, I followed all instructions perfectly.  Even the wine I drank one Friday dinner two weeks ago shouldn't be a problem and didn't make this mess

- Even with all the right care and preparation, these areas are prone to this sort of problem and it's incredibly painful

- I should be taking more pain medication, I should take a rest, stop working out and walking

If she had seen these areas on Friday she would have told me to use Biafine, not calendula on the broken skin. 

So they put on a dressing and we're all hoping I can wear it until tomorrow when they will replace it, and so on for the rest of the week.

I have senecot and hydrocodone to take tonight, I don't want to but  they really thought I was crazy not to take the pain meds, and I need sleep.  

I am quite annoyed. 

Rachel--ANNOYED??!?!?  QUITE ANNOYED!?!?!?!?  What's up with that?  How very Helen Mirren of you.  Would you like a buttery scone to go with that pain?  Seriously, I'd be screaming.  Love the NP's response of "I didn't think it was so bad on Friday."  Well, of course YOU didn't...YOU weren't the one in PAIN!  Also, another whacked out benefit that you missed out on with chemo...you learn that it's okay...better, in fact, to have days where you do nothing but manage the side effects.  My priority during all of this is to make sure that I am able to sleep since that is when your body heals internally.  I don't care how I get there, but I make sure that I get my sleep.  Take the hydrocodone, if nothing else, it'll knock you out for awhile...and you already know about the senokot issue, so you're good to go.  I'm not a fan of hyrdrocodone, and thought it was such overkill that my surgeon wrote me a scrip for 40 of them after surgery.(I mean, really?  40?  I had a lumpectomy, not an addiction)  I think since then I've had about 5 of them.  But if I were going through the pain you've been having...those pills would be my new popcorn.

I'm glad that you'll be getting dressed everyday when you have the remaining boosts.  Finally, they're getting it.  But isn't it funny where you take yourself mentally...okay, not "funny", but...  You've been beating yourself up about that one night of having wine as possibly causing this, then you're thinking that maybe you weren't doing the "right" things and now it could posibly have started an infection.  And  you were wrong on all counts, I'm glad to hear.  You're in the home stretch for now and the days after the tx's end.  Do yourself a favor and just not move so much.  It'll only be for the next week or two at the most...a fortnight, if you will, Miss Stoic.  Eat some crumpets, let your own Mary Poppins do her thing for now.  Hmm...what British reference can I make about the boob...  Oh yes...don't be a tit about it!  Keep your boob still!

Catherine

"I'll let you know who wins the bets I'm making with myself."  LOL  I've had a couple of those and some of them I still can't decide if I won or not.  Gee, that's great, make a bet with yourself and have it come out a draw...nice.