CMF Question

Hi Harley, it's 5:30 am and cannot sleep...i think my onc may have tried some steroids again he had taken them out of the drip when I had a reaction to them.  Once again, speedy and can't pee tho so waterlogged it's nasty...same stuff.

I am glad to hear about the celebratory drink!  I will have chamagne too when I get there for sure.  I am not much of a drinker at all i can't tolerate it and act like a jerk after one, so i stay away in general, but christ, i am about to stick a straw in a bottle of jack daniels, JK, but yikes.  And I hate hard liguor lol.

Your suggestion about the t shirt is a good one.  He's so afraid to hurt me in any way, and I am so afraid to show him, that could work I think.  I think they just want to show us love and comfort too.  Poor guys, it is hard.

Well, drinking a cup of tea after two glasses of water and cranberry juice, to get the old kidneys going...hope this works.  Sleep would be good too!

God no, I would love any update on the nip thing and how you think it works out, process, etc.  I have googled it, but ps seem to post what they want to show, you know?  My guy is brilliant but not too quick on the passing on of info (actually nurse isn't, I think)  I am soo happy with him so far, and I've seen his after shots of this and omg, they look amazing, so natural.

SEs this time besides the not being able to pee thing are still that crushing "gorilla hug" around my ribcage, so annoying.  It's what landed me in the hospital first chemo, seems to not be anything and a klonopin helps a bit.  they tested everything including heart and lungs and blood and all checked out fine, so I guess it could be sitting in that chair for 6 hours and stress?

I'd assume that mattress thing is muscular I bet.  Esp. two weeks after, seems pretty clear.  B ut I 'd still run it by your dr. to be safe, I know on chemo, I was supposed to steer clear of aspirin and ibuprofen and that may be why you  are bruising easily.  Tylenols not as strong, but it is safer to use.

Good luck and thank you so much for sharing...not an easy question but hey, we are all in this together!

love to you

annie

p.s. to Margaret:

reg: your earlier post on your friends' hair:  I have thinned a bit in the hairline in front.  I did buy a wig, cuz I like to be prepared and it made me feel armed...but I can't wear it cuz I still have too much hair. 

It kind of popped off like a frisbee, so I got my hair cut in layers, and heres a really bizarre-o fix, but it's a good one.

Go online and buy Roux Fanciful rinse and the hair color stick they have.  Temporary and all natch, no chemicals, so safe.  It blends away grey roots and if you actually take a cotton swab (I wish I was joking) she can dab it onto her scalp any place she feels it looks thin.  Total and complete disguise!

Good luck

annie

Annie,

If you are having trouble sleeping, it is almost a sure thing that it's those steroids keeping you up!  They also made me VERY HUNGRY!, and I gained all the weight I  had lost at the beginning of my bc journey, getting dx'd. 

You are right...this too shall pass!  I had some trouble after my 1st tx, with diarrhea, then after my other txs, it was some stomach cramps and a little constipation, but I got through it.  I am the biggest chicken, and if I was able to get through it, then anyone else can, too! 

I am not a heavy drinker, but when we moved to the Myrtle beach area, my dh started to push drinks on me, every evening before dinner.  Living in a tropical resort area is nice, but there comes a point where you have to say, "look... enough is ENOUGH!"  So now, I have just ONE or TWO, if it is a special occasion, but I try not to drink EVERY DAY!  But, I just LOVE champagne, so I am always looking for an excuse to celebrate with a glass of champagne!

I got so sick of drinking water... I, too felt waterlogged! 

Hope I could help, by sharing my experience.  I tell my dh that I am shy about these kind of things, but he doesn't believe me, so maybe I am good at hiding it.   It does get easier, though.  At one point, I thought I would NEVER have a sex life again, and that wasn't too long ago.  The camisoles & panty sets sound just right, for helping to cover your new shyness.  In fact, now I think I would like to go shopping for some new items!  

Funny, maybe we have the same ps!!  He doesn't like to give me any details!  But, everyone tells me that he is a great artist!  Funny, too, I don't know what ANY of these procedures are called...I say, you know, when they put the 'thingie' on my leg... instead of "nipple transfer"...  My dh hates the word "nipple"...

Normal... sometimes I wonder what that is.  I have been told that we now have a NEW normal.  You know, I kind of liked my OLD normal...  but, I think I'm getting used to it.

Hugs,

Harley

Hi girls:

Well quick trip to the dr. a while ago to check out that "gorilla hug" to make sure it wasn't anything serious...nope...Just an unusual reaction to chemo, but not heart or anything scarey....my blood pressure was ridiculous, but to get chemo, feel like crap, then get dragged in to check for a heart attack, would do that.  Lordy.

It comes they said from a muscular skelatel reaction which, since I do have fibromaylgia, makes sense.  Not serious, just uncomfortable.  Onwards.  My onc, worlds sweetest man, did ask if he was making me nuts, but I am sure it's mutual, since I am the one calling him.  Oh well.........

Carol, what awesome pictures, thank you so much for sharing them!  It looks beautiful there, it must be heaven, and well deserved!  I really like to see you relaxing in the golf cart!  You should make it a christmas card.

Harley, I am glad to know this "depraved" appetite of mine is normal.  It's like being preggers again, where you want to eat everything in sight.  I'll be a freaking whale when all this is over.

I only know what procedures are called cuz I am nosy and look them up, but shouldn't, bec. it just tells you side effects that I will immediately develop.  :0

Have a good day girls, I'm back to bed, whew! tuckered out!

That up all night bit after decadron is a bitch, but it's better than throwing up I think.

Harley your "new" normal will be so normal to you very soon.  I had a lumpectomy and was left with one DD and one B and other than walking about rather lopsided, no one noticed really, and soon I didn't.  I figured so what.  This time's a bit harder, but given the dramatic nature of the surgery and all the attendant "OMG mastectomy!" stuff, it will take a little longer I think.  The good news here is having been thru this once, I know perfectly well life will be normal again, if not better.  It forces you to make better choices on not sweating the small stuff, not eating badly, exercising, etc. 

The boob issue will settle down, I know, it's just finding a way to deal with it and easing back into a sex life.  I am extremely vain, yes, even at 52, it's a big fault of mine.  Gotta learn to let some of that go, cuz hey, we all get old and wrinkly right?  so this is just some training I guess.  And we'll be lucky to get there, too, so some reorientation of head is in order.

thanks for all the support!! Hope your back is feeling better?

love

annie

Hi gals!

Wow Carol!  What neat pictures!  I'm so glad that you've been able to enjoy your time away and so very JEALOUS!  LOL  Enjoy the days you have remaining.  Give Jill a hug for all of us.  I hope you take pictures when you're with her, too.

Annie...there always seems to be something to worry about, doesn't there?  I'm glad you got it checked out and that it's nothing of great concern.  Our minds can do funny things to us and bc brings out that fact!  You are so right, though!  This will all pass and there will be life again after bc.  Oh, the worries will still be there, but you'll feel good again and the anxieties will be less.  Just keep that in mind.  You'll soon pass that hump in the rainbow and be on the downslide!  I think you've done amazingly well!

Hey Harley!  You are so caring and compassionate that I always knew you'd be a great help to anybody who faces this beast.  You have that special touch!

Well, I'm going to find the recliner.  It's been a good but busy day.

Catch you all tomorrow!

Rita

Hi everyone: This is "down" day after chemo, when I haven't much energy, sothat's why I'm on this thing so much lol.

Carol those pics are wonderful...it is like a club you wish you didn't have to join, but once you are in it, never had such lovely friends....your evening looks great, and those dogs are darling, so is Jill!  so nice of you to share them.  I hope you are still feeling great and the swim boob worked out.

It's so good to check in, get reassurance, talk to friends...you ladies are wonderful.  Heck we all are wonderful. 

Rita, thank you for that vote of confidence, I will just muddle on thru...my big fear is that the gorilla hug and squeeze is an allergic reaction and I'll have to stop chemo. (or is it my hope?   It prob. is what it is, posted a little bit on the reconstruction site to see who has had similar issues with this, called ps for input, may be related to sitting in that stupid chemo chair for six hours, as they had to slow my drip down alot.  That and driving 6 hours to see my kid in PA.  Hm.  Well, I will simply stretch much more and st op the car a few time to do so.  Nothing will stop me going to see my daughter, period.

Harley, you haven't noticed, but Rita hit the old nail on the head...you've come out of your fear mode, and are helping others thru this...that means you are on your way to "paying it forward" and true recovery....Kudos to you, girl, you have made it.  I don't think you have noticed the shift in your posts, but they are more positive, more happy, more "recovered"............yay Harley!!!

Hey, kudos to all of us, every day, this is a pain in the double bu t

but we are making it!

My boob is beginning to look semi normal!  Not as normal as if I'd just gone with the pop ins, which still seems the brighter options when I get days like this, but getting there..........

love to all

annie

Annie,

Thanks so much!  I know that after I was dx'd, and before I had my mast., we went out to dinner with some friends.  I didn't say too much about it, but when my dh got up to go to the restroom, our friend Dave said, "You're petrified, aren't you?"  I just nodded my head YES. 

When I think back on it, I can't believe that was just last year!  I feel like a different person now... better somehow. 

You are right... maybe I would never have chosen to join this club, but this is a wonderful group of women, and I feel honored to be a member of this club!

We are survivors!! 

Get some rest, feel better tomorrow!

Hugs

Harley

Annie,

I had 4 txs of Taxotere & Cytoxan.  I wanted CMF, but my onc wouldn't do it.  He said that no one ever does CMF any more... What a liar!  I had a terrible fight with my onc, because when he found out how much my insurance pays, and he would be forced to "lose" a little bit of money on the deal, he wanted to change my chemo drugs to Adriamycin & Cytoxan!  I refused!!  Adriamycin can be very toxic to the heart.  My onc finally relented, and I got Taxotere & Cytoxan.  I DID lose my hair, but in a weird, strange pattern...I had the 'receding' hairline thing, but it immediately filled with fuzzy white hair... I looked like Sluggo, from those old comics - Nancy & Sluggo!

My 1 yr. anniversary of my biopsy was 3/15.  I choose that as my official anniversary, since we have dx date, and mast. date, etc...  because on 3/15, my surgeon TOOK IT OUT, and it is GONE!  When I had my mast., the pathology report read that there was no cancer found in the tissue...YIPPEE!

Annie, one of my cats is a Norwegian Forest cat, and he is a sturdy cat, a big fuzz ball!!  I would love to think of myself as a Norwegian!

I never thought of "survivor" being in the meaning of dying...that is not an option!

No radiation...that is why I got the bi-lat. mast.!  I am a chicken!

I'm glad that your onc gave you some benadryl.  He sounds like a sweetie!  He's definitely a keeper!

Did you get chemo the 1st time around?  I am guessing no... You had radiation, no?  You are VERY BRAVE!

Hang in there!  You WILL get through this!!

You are so sweet!

Harley

Hey Annie,

My MIL went with me the day of my 1st chemo., cuz my dh couldn't be with me.  He was still in the Navy, and could only come down every couple of weeks or so.  She was with me, when I went toe-to-toe with my onc.  She told me later that she isn't worried about me, because she could see that I can stand up for myself.  She didn't know just how VERY SCARED I was!!

yep, I looked like Sluggo... I made myself laugh when I first called myself Sluggo.  Then my dh looked at me, and he said "You know what?  You DO look like Sluggo!"  So the nickname stuck!  Glad that is over now.

Oh, I bet you are cute!  It IS nice when we can laugh at ourselves... I think that was how I knew it was going to be alright, too.

WOW!!  You did everything the right way the 1st time, but sometimes the nasty bc monster STILL comes back!  Radiation...just the thought of it scares me silly!  But, so did the thought of chemo...

The reason I got the bi-lat. mast. was that my general surgeon, who I love, advised me to do it this way.   My breasts were very small... and they were dense and fibrous and fatty... all things that make finding bc difficult.  By the time my surgeon took out the mass, when he did the biopsy, he took about 1/3 of my breast!  Even though the bc was only .8cm, I had all this fatty, dense tissue, and he had to take it all out, just to be sure. 

The reconstruction was easier,too, because my ps didn't have to 'match' my existing breast. 

Ya know, these saline implants are starting to look more like breasts, and less like... water balloons!  Maybe it's the tattoos that make them look more realistic.

Yes, we WILL NOT go through this again, if I have anything to say about it! 

love ya,

Harley

Good Afternoon Miss Anniebelle,

You are too funny!  No, I didn't run away or hide...but I thought about it.  I have two cats, and Thor is the Norwegian, and he's not afraid of much, but Spike, the black & white tuxedo, used to hide under the bed.  When I was dx'd last year, I wanted to hide under there with Spike so bad!!

Rita sure has a way with words, doesn't she?   

I went out to breakfast with my MIL, and then shopping.  She is so funny!  She MADE me buy this new shirt!  It's one of those little baby-doll short tops, and it is kind of cute! 

You have a great Friday, too, and a wonderful weekend!

P.S.  My lower back pain is ...back, and my left LE hand is kind of numb, so I put a call in to my onc... but I am SO SCARED!  If I don't hear from him today, I'll call on Monday.  See, I should just face this, and be brave, but I'm so scared, I want to hide under the bed!

Hugs,

Harley  alias Sluggo... alias Chicken Little!

Annie,

My onc's office called me.  I gave my symptoms to the nurse who called, and then she checked with my onc, and called me back.  She said that he wants to order an MRI of the brain and an MRI of the lumbar spine.... EEK!!  I mentioned that I will be seeing my surgeon (who I love) on Friday, so  maybe I should just wait and have him order the tests.  See, it will be a one hour drive to Wilmington if my onc orders the tests, but it will still be a one hour drive if my surgeon orders them.  I have to see my surgeon, anyway, since he is making me get a colonoscopy sometime in the next month...  Oh, it's always something! 
Annie, this lower back pain has been happening since the end of February, on and off.  Now the numb left LE hand has been going on for almost a week...  I am just SO SCARED!  It couldn't be JUST from shopping, since it's been going on for so long. At the beginning of March, I had an x-ray of my back, and they found nothing. 

I know I need to go get this checked out, but....  I am just so scared!

Harley

Hi gals!  I'm so excited.  It's cool here today but the sun is shining brightly and I'm such a "sun person!"  Maybe spring is finally arriving in Illinois.

Carol and Jill...what wonderful pictures of you two gals!  I am so glad that you got to spend some time together.  Isn't it amazing the bonds that we can form on these threads?  I would never have understood this a few years ago.  Thanks for posting the pictures.

You are both such attractive gals!

Annie, you doing O.K. this time around with the normal side effects?

Harley....Wow!  You've had alot on your mind and our mind does indeed do strange things to us!  We had lots of aches and pains before bc.  How often did we take an Aleve, Tylenol, Excedrin or some other "magical pill," go right on with the day and never stress out about those aches?  Now, each little ache sends us into a cloud of doubt and fear.  I can see where you'd be worried about your back.  Hey, we've been through lots, and none of us wants to do it again.  (That's why I admire Annie so much.  She didn't have any choice in the matter and she's taken "the bull by the horns" and is just pushing onward.)  We all have that worry mode now....guess we're entitled to it even though it doesn't help us or change anything!  LOL

I was so bad about this at first that my onc told me to take the 2 week challenge.  If something bothered me EVERY DAY for TWO entire weeks, I should come see him.  If something hurt for four days, went away for a day or two and then returned or stopped hurting, it was probably a "normal" ache or pain.  He said that usually by the time the big C gets into the bones or organs and causes pain, the pain doesn't stop or subside.  It's there to stay until attacked by very strong pain meds or radiation.  You mentioned that your back was feeling better on some days so I'd like to think that you've just been experiencing some "normal" back pain from wear and tear or the mattress experience.  My back bothers me quite a bit when I sit for long periods.  Our minds don't seem to help the situation any, either.  While we're worrying about what "might be" we're wasting hours of our life.  So if, you're still really worrying, maybe you need to go get it checked out for your own peace of mind, hon!

I don't  think that I told you about my numb fingers that I had a couple of weeks ago.  I woke up with my ring finger feeling really numb.  I never had that experience during chemo but, yep, I started to worry about neuropathy.  I stewed and worried for a couple of hours.  Then I got searching on the internet and read some disturbing things.  By that time, my "pinky" was also beginning to feel a little numb.  I had myself pretty worked up.  This continued for most of the morning.  That afternoon I decided to polish my nails.  I took the bandage off my ring finger where I had put it the day before to keep a split nail from tearing all the way off.  Within a half hour my numbness disappeared.  See what your mind can do to you?  I guess I just had that bandage wrapped a bit too tightly in the wrong place.  Talk about feeling dumb!!!!

Annie is so right.  When we complain to our doctors, good doctors listen.  They assess the situation.  Because of our bc history now, they're going to be especially cautious with us (and scare us at the same time).  They'll order tests to rule out our fears.  We want them to be pro-active and be thorough but at the same time we're afraid of what they "might" find.  I guess maybe we should try to think about what they "might NOT" find and how much better we're going to feel knowing that we're still O.K.  Pretty hard to do though, right?

Hugs to you dear!  I talk a good line but I have my three month onc appointment coming up on April 10th and I've already began to let "what if's" pop up occassionally.  Everyone tells me that this gets better as time passes.......and really, think about all the things that have improved since we started this journey.  Hopefully they will be right.

Well, I'm off to run some errands and enjoy this day. 

I'll catch you later, gals!  Everyone enjoy your weekend.

Rita

Hi girls, I was gonna go get on the ex bike, but wanted to check on Miss Harley..I know this is so damn frightening.

Rita, so glad you came on...you have the perfect way with words and such a reassuring way of putting things...everything you say makes perfect sense...I am no one to admire, but thank you.  I just am going to get thru this and that's it.  What choice do we have?  I used to laugh about this to my husband and say we can turn our faces to the wall and moan and "oh poor me" all we want, but at some point, someone's gotta change the cat box and make dinner, might as well be me...got us thru.  We spend alot of time laughing about my "foob" now which is just like a rock.  Better to laugh than cry I say.

Harley, look at what you just wrote...honey, you solved this yourself.  the most recent thing? The rings at Walmart.  Sleeping on the bad side?  Mattress turning?  And dear heart, your father in law had nothing at all to do with your situation.  Don't go there.  These all make perfect sense.  And if it's relieved by a normal pain reliever, then........well sounds like normal pain.  But please, for your own sake, check it out anyway.  We'll all just worry.  The flip side of being a survivor of this is the worry.  That does get better,tho, mine about year 3 or so.  Of course, the damn stuff came back, but most folks doesn't; I just had a nasty type that does that.  I look at it like weeding.  Gotta keep at it and live in the sound bites where you are not doing cancer stuff.

Cuz all of life is a sound bite, no ones getting out alive!  (joking, but you know what I mean)

It's all going to be OK.  Look, we have a legacy now that is annoying.  We have to be vigilant and healthy (sigh) when all I personally want to do is drink some wine, get fat and eat chocolate and watch Brit coms.

But no more.........but Harley I am so incredibly proud of you for talking yourself around to seeing where this came from.  Wow what a big shift in going from "victim of breast cancer" to "survivor of breast cancer" ........not going to let it ruin any more of your life.  And the fact that you even called your onc!!! Talk about brave!!! Phone calls from oncs and other drs. after this are one of Dantes Seven Circles of Hell.  Really truly scarey, and you did it!!!!!

Even scared out of your brain, you dealt.  See what you just did?

harley girl, you are a winner.  You will be fine.

p.s. rita, still had awful se's...dammit!  Thanks for asking.  They are going to dilute that cytoxan even further as I get this musculo-skeltal thing that feels like a rib crushing hug.  It appears not dangerous, but oh, my mind gets going.  (See Harley, we all do it!!)

And my onc gets so worried, he had me take tests for a heart attack. Now that's really gonna give you one!  but I am fine, and feel good today (day 4) Pretty much on schedule.  Taking vitamins, and gonna go get on that bike, cuz if you guys are my model, you all kept active, drank lots of water and I aim to be there too!  The one that wows me is Carol.  She just goes on thru it all, and her attitude is phenomenal!  My hair is thinning, but honestly there was so much of it, it seems not to be too noticeable.  But I freaked out and now have the bandannas, hairpieces, wig, all of it.  Just in case.  And to make you laugh, Harley, some stuff from QVC that you stipple on with a brush to cover bald patches, like that spray on hair in a can on TV.  Charming.  Oh, I should be a peach in a few months.

Everyone have a good day, Harley, Jeanine can give you my phone if you need a pep talk, happy to talk to you, girl!

love

a

p.p.s/ to Rita then I swear i will shut up:

I will pray for you  on April 10th and send very good vibes.  How scarey those appts. are.  But all will be well, I just know it.  You are the "good angel" of this board, and we need ya!

(            ) big hug for scarey visit

love

annie

Annie,

Thanks so much for all the wonderful advice, and all the things you are sharing with me.   Too funny, about buying the bandannas and the wigs... Maybe I could send you one of mine??  I am sure you won't need a wig, though.

Yes, it IS good to try to keep active, and exercise when you can, because it really helped me with se's from chemo.  I didn't have very many se's.  I even asked my onc once, "Is this working, 'cause I haven't had too many se's...especially the hair loss...it didn't ALL fall out, but I was nearly bald...I had that Sluggo pattern happening!

It HAD to be frightening, when you had that reaction to the chemo, and you thought you were having a heart attack!  Oh, how scary!

I have switched the rings to the right hand, but...now my left hand feels so bare! 

I will just keep taking the Tylenol and try to work in some exercise, too, because I have suspicions that these pains MAY be due to the Tamoxifen, and keeping active keeps the stiffness away.  I wouldn't describe this pain as 'stiffness', though. 

Thanks so much for all your wonderful advice, Annie & Rita! 

You are such great women!!

Harley