Starting Chemo May 2008

Gracie -- sorry that Senor Nausea has visited you at all, and how rude of him to arrive early.  May his amigo, Senor Dolor (pain) move on down the road and miss you completely.

As I mentioned, I called my gene counselor today. (It kind of weirds me out that I have yet to encounter someone -- like me -- who is BRCA+ w/ bc who is not a fan of masectomies.)  I was reminded (and I hope I wrote this down right):

My BRCA2+ status does not influence my risk of recurrence; my risk of recurrence is similar to other women who do not have the gene mutation. And, lumpectomy+chemo+rads and masectomy are about the same.

My risk of a new primary (i.e., in other breast), however, is about 2-3%/year for the next 10-15 years. That's probably a high estimate, because it doesn't take into account me having my ovaries out or taking Tamoxifen. It also is based on shakier information than it seems, because the research and follow-up is really not there to state these things definitively.

FInally, she mentioned that different countries have different rates of masectomies. One possibile explanation is that surgeons may vary in how often and emphatically they recommend masectomies, ranging from PRO-MASECTOMY (in countries like the Netherlands and Germany) to NOT-SUCH-FANS of MASECTOMY (in France). I thought that was interesting though it makes a lot of sense. Further evidence of the social construction of risk, you know?

Just got home a bit ago from my first day back to work. What little I have done recently has been at home and on my own schedule. After 5 hours I'm wiped out! Was nice to get back to some normallcy though.

Got alot of reading to catch up here LOL

Cris~ I wonder if me craving cheeseburgers has anything to do with low counts. I wanted one so bad a few days ago I could taste it. I keep asking for a sheet with my counts on it and haven't seen one yet. Gonna have to be pushy next week to see mine.

Randie~ Haven't heard of the rome series... I'll have to look it up later. I only get to watch satc in my room alone.. I have a 7 yr old and I make sure he is glued to a toy or something before I flip it on.

Linda~ SOOOOOO glad you are doing ok today. I've been worried about you. Your story brought a tear to my eye. How exciting for that lady. I woulda bawled like a baby if that had been me.

Noelle~ hope you are feeling a tad better, don't try to overdo it already. Loved the Satc movie especially when charolette pooped her pants!!!

Karin~ our new celebrity! I'm gonna have to check out the vid......

Gracie~ feel better sweets!

Angels~ congrats to your dd!

Rock~ is your mom any better? How are you feeling today? I know this is probably when it will start to set in on ya. Sending you feel good vibes! as for posts..... I'm just happy to read that others are feeling good today. That works for me. :O)

Jean~Hope you get to feeling better soon as well!

Eddie~ wrists any better today??

Ok I think I have everyone covered that posted lol.... Wishing all the other ladies a fabulous evening as well and hope everyone is doing great!

Rock,

With all the talk and mention of crocs on this thread how did we not run across this before. Heres my Ode to Rock for getting it started.

http://www.youtube.com/watch?v=7eHTOcrRxzg&feature=related

Enjoy the day, Karin

Hello all,

Linda-so sorry you had a scary reaction while you were flying solo--must have been a bad feeling. Glad you are okay. 

Cris-LOVE the garbage truck.  I am going to write it down and tape it up on my bathroom mirror, that's how much I love it. 

Roxi/Mary--you are beautiful without hair.  I, too have to make the decision about rads...although my onc has told me I need to have them, but I am "right on the border" whatever that means.  I will probably have them, since she knows way more about cancer treatment than I do, but boy, isn't it scary to think about?  

Karin-loved your pole dance--congrats on being done with chemoooo.

RanD-glad that first infusion is over without any major problems--hoping minimal to no SEs for you and sending happy vibes your way.

Eddie-Hope your wrists are better..

Otter, Noelle--I keep imagining this chemo journey as swimming across a wide river.  And I can see the two of you, who swam across before me.  As soon as you got to the other side, you turned right around and started shouting encouragement to me and the rest of us who are still swimming away, and getting tired, and thinking maybe we can't do it after all.  You two are still shouting encouragement to all of us, and as each of us gets near enough to you you will hold out your hands for us to grab onto.  THANK YOU SO MUCH!!!! 

Jean-looks like a lot of us are having rads. Hopefully what they say about much less se's compared to chemo is true... 

(WARNING:Whining ahead) 

I haven't posted much this week as I went back to work on Monday and worked a full week--which seems to be getting harder and harder to do!! I am exhausted. I have taken a lot of naps, but did manage to work my full 40 hours. I have been, I think the lone holdout on the crocs thing as my feet really didn't start bothering me until this last tx (#5)...but I am buying them tomorrow!  My feet hurt.  Wearing heels is now officially over for the duration of the summer, at least.   I was probably stupid for wearing them as long as I did...but they look so good!!  Anyway, I am pretty miserable.  I have gained like 20 pounds in the last six weeks. My onc says most of it is water, but I feel really ugly, ya know?  I know being fat doesn't make me unworthy or a bad person or even ugly--but I have battled with weight for most of my life and learned, finally, that I must exercise to keep in under control and I AM JUST TOO TIRED to walk most mornings....so not only do I feel fat but now don't have the benefit of those early-morning feel-so-good endorphins. Tomorrow I am getting up and walking even if I am "too tired"--I'll just walk as slow as I need to. My ankles are swollen again tonight, too--and interestingly enough, it's the same exact day in the chemo cycle that I had problems with them swelling last time. I have them elevated and iced and I am drinking lots of water...last time they were okay the next morning.

As the day of my last treatment approaches (August 7th), I am sensing that will be an emotional roller-coaster all over again. I am SO ready to be done with chemo, I have been counting down to this for the last four months--but every time I think about going in there for the last time, I start to cry and don't even know why.

I can't tell you how much I appreciate you all.  This is where I am safe, I can say anything and know I will be understood..

Sorry if  I missed anyone. (Oh, yeah, Sable! Glad your first day back at work went well.  Also, very glad you get paid for petting kitties and dogs.  What a dream job!)  My son, who just left home for college, took his two dogs with him, and I miss them so much!  Once I am sure his keeping the dogs in his small apartment is going to work out, I am going to have to get some more dogs!  I love having them, they love you so unconditionally, but also my husband is an airline pilot who is gone roughly half of every week--and having big dogs, in the house, helps me feel safe. Just when I get that irrational female-home-alone-at-night fear,all I have to do is observe the dogs, and if they are acting normal, I know there's no psychopath outside trying to get in...

Love all of you.  Hope everyone has a great evening/

Love,

Sue 

Glad you all liked the Garbage Truck (that sounds odd!) and feel free to use it however.  I will have to tell dh - he will get a kick out of that! 

Karin - That was a cute video with the crocs - I think mine might look a little like the ones at the end (cotton candy pink!) And speaking of videos, how did I miss the pole dance vids?  I saw the pics, but I might have to visit Rock's site to see what all the talk is about...

Rock - Glad you had a good time and I truly hope your mom is getting better.  I'm changing vibes and now sending cool thoughts to her and you!

Eddie: I agree, Cancer Vixen is the best thing I've read about chemo. (Author -- who was on CMF -- is a friend of friends; hers was the first book about cancer I was given.)  I also like The Courage Muscle: A Chicken's Guide to Living with Breast Cancer despite the metaphor-heavy title.

And Eddie-dear, it is in my vested interest to support people in their griping/whining/bitching/moaning/complaining/kvetching since I do a lot of it myself. To clarify: No need to apologize. We're all doing what we need to do.  And frankly, if what you are getting is a larger scale version of the pain in my shins, then I gotta ask: How are you not coming unglued?

Re: Weight. But some of it has GOT to be the drugs. I am barely eating. (Zero appetite. Everything scares me.) Trying to exercise every day. And still.  I was weighed (I don't have a scale) on Wed and Thursday and there was a 6 lb difference. Come on, that has to be fluid. My solution? I'm thinking in terms of "body swelling" rather than "weight gain." And I wear these roomy shorts with an enormous waistband.  (By the way, do any of you remember "husky"-sized clothing?! And size 6x? I LOVED being size 6x cuz I was six years old.)

Randie: I forgot to mention how much I enjoyed your descrip of ol' "Chatty Kathy." 

Karin: Croc video.  I was studying the sidewalks like a super-sleuth trying to figure out where the film was shot. To no avail! (I am clearly not a new yorker yet.)

Sable, anything chocolate sounds good, whatever the reason!

Going for my crocs today, so far no SE other than bad indigestion and headache from too many steroids.

Hey, talked to my local/family member nurse and she told me that removing either ovaries or uterus, ups the chances of the nasty assed "C" hitting whatever you leave behind, anyone else heard of that?  If that's true, I want it all out!!!!!!!!!  Crap, I thought they could just take the ovaries and then I be done.  She's 39 and had her uterus removed 5 months ago because of fibroids, but left the ovaries to prevent early menopause.  Last week she found out she is perimenopausal and is pissed, lol.  SHe says the hot flashes are so much fun, she feels she's on the CHEMOOOO train with me!  The nice thing about talking to her is that I get so much more positive feedback about what to ask and how strongly to advocate my positions to my onc.

Eddie: you call that whining, come on sister, you can do better!!

cris: love the address thing! thought maybe you were trying to tell us something in CHEMOOO code

sue; heels, you are so much better than me.  I haven't worn them since my ds wedding last summer. maybe you can find dress up crocs with heels?  hmmmmm, there's a whole new field to explore

anyway, off to farmer's market, see you all later, randie

KristyAnn -- Oh noooooo!!! Oh sweetie... I'm so sorry! I just read the first sentence. Gonna post this and write again.

They do make crocs with heels. They are little open toed mules.

 Just got up from a long sleep. Having my body adjust to the lack of chemo, and my son's day camp schedule all in the same week has been a lack of sleep hell. 

HOLD PLEASE!

Just had a hot flash and had to stick my head over the A/C vent.

OK, as for weight gain. The book I am reading, and the other info I have say that the bloating/ weight gain= hormone wackiness from the chemopause which is caused from the chemo killing our egg production AND the steroids AND the lack of exercise/ bad eating AND the chemo slows the metablism down.  So we have everything against us in that dept. 

 The good news? At chemo end+17 days I have been able to work 6-7 hour shifts on my feet as long as I eat regularly I can keep my energy up. I can work out lightly. My feet and hand tingle less and less everyday. I have lost about 6 inches in my hips and waist. My weight is all over the place depending on the time of day, but how I feel and how clothes fit is all that I think is impoortant.

 Sue and everyone gaining waight- weight gain from medical reasons is far more depressing than normal everyday weight gain. Once this is all over I will give you my eating plan/ exercise plan that helped me lose 45 lbs in '02. I quit smoking, had a baby became a single parent,and moved in with my mom at 32. So a slower metabolism and depression made me eat a lot!  I had always been tiny, so I had never gained weight before, so when I hit 155 at 5"1 it was a bit of a shock. So I had to learn a whole new lifestyle. This is the best time of year to start it. For now, eat as well as you can and don't worry too much. 

 Rock, my son wears Husky sizes, I actually have to go to US websites to get them.For some reason I cannot get them here.Canadian shopping really is a train wreck in my opinion.I remember being a 6x when I was 6... i thought it was very neat. 

 Yesterday I managed a 2km( 1mile) walk, my tingly feet were a little ouchy but I did it. I planned to wear a hat or scarf to catch the sweat. It is official, I made the right decisionto go bald  through this whole chemo thing. I went in to do the payroll before my workout in a baseball cap and my staff said I looked like a 6 year old boy with cancer ( nod to Rock and the Pam incident posted on Road to hell...) I thought it was fun being a 6x when I was a little girl!  But, a flat chested 6 year old boy is not a look /disguise I want at 41!

I am off to a quiet day of housework, gardening and stuff.

 I general shout out of chemooo! to y'all.

Noelle  

 P.S. Once I took myself off the hardcore heartburn meds I have been on since day 1 of A/C I lost  a lot of the bloating too.

Kristy - if you feel a good kind of tingling, don't be alarmed: it's all our thoughts and concerns flying your way. 

We see your name every time we open this thread, and I suddenly realized this morning that our thread leader hadn't posted in while.  I figured you were just busy.  SO sorry to learn the real reason. 

I'm also struck by your calm, clinical description of all that's been going on.  That's my coping style, in general, but I dunno - I'm not sure how I'd do in your situation.  There must have been points when it was pretty terrifying.  A week+ in the hospital is a pretty big freaking deal.

Glad to hear that you got your Herceptin, that you're eating, and that you've got enough energy to read and post.  I wish I could be down there to bake you something delicious - fruity or chocolatey, your pick.

Love and good wishes,

Linda

Had to share this will you all, my sistas! (It's a bit long, but I had to share)

A young wife sat on a sofa on a hot humid day, drinking iced tea and visiting with her Mother. As they talked about life, about marriage, about the responsibilities of life and the obligations of Adulthood, the mother clinked the ice cubes in her glass thoughtfullyand turned a clear, sober glance upon her daughter.

'Don't forget your Sisters,' she advised, swirling the tea leaves to the bottom of her glass. 'They'll be more important as you get older. No matter how much you love your husband, no matter how much you love the children you may have, you are still going to need Sisters. Remember to go places with them now and then; do things with them.'  'Remember that 'Sisters' means ALL the women... Your girlfriends, your daughters, and all your other women relatives too. 'You'll need other women. Women always do.'

What a funny piece of advice!' the young woman thought. Haven't I just gotten married? Haven't I just joined the couple-world? I'm now a married woman, for goodness sake! A grownup! Surely my husband and the family we may start will be all I need to make my life worthwhile!'

But she listened to her Mother. She kept contact with her Sisters and made more women friends each year. As the years tumbled by, one after another, she gradually came to understand that her Mom really knew what she was talking about. As time and nature work their changes and their mysteries upon a woman, sisters are the mainstays of her life.

THIS SAYS IT ALL:

Time passes.

Life happens.

Distance separates.

Children grow up.

Jobs come and go.

Love waxes and wanes.

Men don't do what they're supposed to do.

Hearts break.

Parents die.

Colleagues forget favors.

Careers end.

BUT.........

Sisters are there, no matter how much time and how many miles are between you. A girl friend is never farther away than needing her can reach.  When you have to walk that lonesome valley and you have to walk it by yourself, the women in your life will be on the valley's rim, cheering you on, praying for you, pulling for you, intervening on your behalf, and waiting with open arms at the valley's' end.  Sometimes, they will even break the rules and walk beside you...or come in and carry you out.

Girlfriends, daughters, granddaughters, daughters-in-law, sisters, sisters-in-law, mothers, grandmothers, aunties, nieces, cousins, and extended family, all bless our life!

The world wouldn't be the same without women, and neither would I. When we began this adventure called Womanhood, we had no idea of the incredible joys or sorrows that lay ahead. Nor did we know how much we would need each other. Every day, we need each other still.

Linda - I hope in a good way.  (It made me cry too, and immediately thought of all of you!)  I also seem to follow that similar weight loss/gain pattern.

Kristy - We will come in and carry you out, if need be!  Get better, get better, get better (sending these thoughts to you).  So sorry for all that suckiness!

Noelle - Thanks for the hope that the weight issue will get better when we're ALL DONE. 

And I got a kick of the being 6 and wearing 6x.  I definitely remember that!  My older dd is "petite" and never wears that size that matches her age.  She's nine now and wears (barely) a 7.  However, she is bigger in her mind!

Kristy~ holy cow, I sure hope you get to feeling better soon! Sending TONS of prayers and good vibes your way

Cris~ you made me cry too... and here my nose just stopped dripping for a minute.

I hate to say this but so far I have been losing weight. Thank goodness. I lost about 16 pounds while on a/c and for the moment I seem to be holding steady. I sure hope it stays that way. Probably the first time ever that when I tell hubs how much I have lost he frowns at me. I figure being a bigger chick it wouldn't hurt to lose some anyway... sure as heck don't need to gain!

Congestive WHAT???!!!!!! Uh-UHHHHH. Oh no it isn't. Sistah Sue, there is NO WAY your generous heart is congested. NO WAY.  Yes, kick the shoes off and put your feet up.  Waaaaaayyyy up. No salt. Eat a banana or two.  Ummmmmm.... what else? what else?

Swollen ankles and legs -- be GONE! I command thee!  In the name of Karin's pole-dancing video and Sable & Cris's crocs and all else that is sacred, let the swelling Fuh-LEEEEEEEEE from her limbs and leave our Sister without pain. Buggabuggabuggabugga.  (Let me know if this works)

 *****

Kristy -- Here is a group portrait of us, wishing you well:

(See how pretty our bald heads are?!) 

*** 

Last night, when I was dancing on the outdoor stage at Hair, a couple people -- including a cast member or two --- wished me good luck. I was trying to pass off the tears like I was just sweating really hard but not sure I was very convincing.

(btw, I hate it when people say "don't cry" or anything smacking of how someone is supposed to feel. Hate it!)

***

My waist is thicker. Suspect weight re-distribution is part of the menopause. LInda -- why do I feel as though you're going to hang on to your athletic build?  After all, there are tons of post-menopausal women who are in excellent shape (or are in better shape than they were before menopause) -- why shouldn't you be one of them, chooknow?

***

Sable, blue blue blue eyes, right?! (I love the new avatar!)  

***

rock,

thank you so much, the FUH-leeee made me laugh out loud.  I hope you're right.   Feet are up and banana has been eaten.  Any more instructions?  Love ya! (buggabuggabugga--could you smite me on the forehead and ask Jay-sus to heal me while you're at it?) 

Sable,  I am 49, will be 50 in November, and the only good thing about that birthday is it's the one that makes me ELIGIBLE TO RETIRE!!!!! I am counting the days!!! (YEAY!! Sable finally called me daulin!!!)

Kristy--that's me, second from the left in the group portrait--I'm frowning, yes, but aren't those little, tiny stylish earrings I am wearing?  That would be me, earrings, heels and a power suit....no matter WHAT is going on--but no makeup, which I guess is kind of odd...whatever, just don't like makeup. I do occasionally wear a little blush and mascara for a special occasion. I guess I'm just not a true girly-girl after all.  Anyway, hope your hospital food is good--since you're in Texas, I'm thinking the mexican food might not be too bad! 

Still feeling scared and helpless but not so alone...