Starting Chemo May 2008

Cris~ that sux royally. But we will all be here with you still daulink, don't you fret!

Randie~ If that is the only time you have cried during the stabbing then you are my hero. I bawled the first 5 times and I mean bawled/had a fit. Horrible needle phobic here. This is my personal version of hell I think.

Noelle~ why was I expecting you to use the word muggles instead of normals? I had to backtrack and reread what you wrote cuase in my head it said muggles LOL. I found that my nails changed right after I started with taxol. They grew and looked fine until then. Now they are changing color and hurt to the touch.

My day~ first thing this morning my son sees me directly out of the shower and asks "mommy why did you pull out your eyebrows?" So I sat him down before school and had to explain that the medicine I am taking made my hair come out but that means that it is working and mommy will be better very soon. We don't say it outloud what I have, we just say that I am sick. At 7 yrs old, I don't think that cancer needs to be a part of his vocabulary... that's just our choice. Then I get to wrok for a few hours then off to my therapy session. Turns out my regular therapist either explained my MLD incorrectly or I misunderstood massively. So the boss therapist went over everything with me point by point again. I have a better understanding of all of this now.... for the moment lol. I did ask her if this swelling is something that is taxol.meds related and she thinks that it is. I went for 3-4 weeks without any therapy and nothing swelled till a few weeks ago and POOF gained 7 pounds of water overnite~ literally. So hopefully once I am done with this drug I can get it back under control. I want to go a day without thinking the word cancer, lymphodema or counting down till my next toxic cocktail.... won't that be nice!

Eddie~ got your floaties on yet dearie? I'm sitting here blowing mine up ready for next thursday!

Hi women,

I am quieter because I am working....but it's Friday afternoon of Labor Day weekend and everyone is gone so why not check in with you? Hell, Rock used to check in REGULARLY when working, eh? BTW, it cracks me up when we're "quiet" as I believe we are likely the most active group around. My friend, Dottie, said the whole time her chemo group was online, the had under 1,000 posts--really.

On nails....my toenails are so gross I won't go into details except to say that there are many colors and none of them are polish. I also have blood blisters. I continue wearing my fake crocs faithfully. I still have my left leg old lady edema and wear my support hose each night (I already told you they help the swelling go way down PLUS no leg cramps ever). My fingernials have been good but I've only had two herceptin treatments so far. Ho hum.

Jen,

I do NOT need floaties. I am a slow but very, very steady swimmier.

All,

Can I throw in a little scare here? I am scared about being her2 positive. We are 25% of the IDC population and I know we are supposed to be very receptive to herceptin (Hell, we get to take it for a whole year at least) but I have been scared about the her2positive stuff lateley. Otter, what is your take on this Ms. Scientist Research Wizard Godess?

Obama was awesome last night and I called it on McCain choosing a female although someone mentioned the gov of Alaska a few days ago and I dismissed her as too unknown...but I have been saying he's pick a female for a long time. In my next next life I will be a political analyst. I say next next because in my next life I am going to be an athelete on performance enhancing drugs because I like steroids....I just hate the crash after.

Labor Day weekend....relax, play...perhaps have a family day -- go see the Everett Aquasox or the Tacoma Rainiers play baseball...who knows? I'll check in with you.

Ya know, I'm not that worried about being her positive to be honest. There could be worse things. And with us taking the herceptin things will be good. I just want to get to the other side.

MLD is manual lymphnode drainage. They took out all my nodes on my affected side. Since they did that my surgeon sent me straight to a therapist to prevent lymphodema from setting in. He said some docs just wait to see if you swell up before you do anything and he thought it was better to get a head start on it. So I had 6 weeks of therapy right after my surgery and then I went a few weeks without any problems at all untill I hit the steroid/taxol phase and now I am holding water like a water tight bucket. They teach you how to do the massage yourself and help the fuilds move around in your body and not pool in one area. I haven't had any problems with my arm swelling until recently and that is because my chest on my bad side is quite puffed up. I'm a "d" on my good side and almost an "a" on my bad LOL.

Sable, I was proactive as well when it came to lymphodema, and saw a therapist for about a month.  I learned mld and bought a sleeve for air travel which I wear at the first sign of swelling, and also when I am doing housework (because I am a klutz, and left-handed, and I had a left-side mastectomy). I did burn my left arm pretty good on the iron about a month ago, and just aggressively treated it to prevent infection until it was  completely well.  That was a big hurdle, because I knew an injury to that arm was inevitable, and nothing bad happened.  Just because something CAN happen, doesn't mean it WILL.  P.S. My husband calls it "nymphodema". 
; O ) 

Eddie, your being a political analyst doesn't surprise me.  You strike me as a THINKER.  I am sorry you are afraid about the HER2 thing.  Here's my personal philosophy (which I admittedly can't maintain 100% of the time):  No matter how much I worry, that will not change the outcome.  It will only ruin the moment in which I am doing the worrying.  If it's not too personal to say, I will pray for you to have peace from worry.

Linda,  good to see you! Your pole dance pictures were great!  Sorry it took me so long to say so, I've been soooo busy.  Either busy doing something or napping for energy!  LOVE the shoes.

Jean, you win Miss Coconutboob for 2008.  What's your position on world peace? Seriously, I bet you made some scared, sad or sick people getting chemo give out a belly laugh, whcih everyone knows lengthens your life! (I miss that great belly-laugh that three-year-olds have.  If anyone has one that young out there, could ya go "nose tickle" their belly for me and then send me the laugh? And while you're at it, send me the "doo-GAIN" too).

Noelle, wonder woman. Bicycle races, swimming, taking your kids on a great, fun but strenuous day of excitement...where are you getting your energy? I am checking out your website, tonight!

Kristy, congrats on thinking of a reason to make birthday cake! Our family's birthday cake has always been the recipe on the back of the Hershey's Cocoa tin...extra chocolatey with cream cheese chocolate frosting..let me think, how can I work in a birthday cake?....

Adrienne, how goes it?

Cristine, great swimming!  How are you feeling? Any good dd stories? (I love your dd stories).  Has shovelgirl made an appearance this week?

Otter, thanks for your welcome home.  The dogs are home, and fine.  The greyhound had lost three pounds, and she had worms.  My dh took them both to the vet today.  They are both fine.  They are SOOOOOO happy to be home.  Sam had no place where he could let them run off the leash, so the only way they could run is if he ran with them.  And the greyhound only needs to run five minutes a day, but she REALLY needs that five minutes. I am so glad to have them back, I didn't realize how much I was missing them until they were back.

My son and his gf are so happy, it makes me feel so good.  Sam has completely furnished his apartment from craigslist and things he has found that people were throwing away.  I am so proud of him.  We met his gf's grandmother.  We went to her house, and sat in her kitchen and drank (very good) coffee and ate cookies and got to know each other a little bit.  You can see in Sam and Tielle's faces how happy they are together, and that they are soulmates.  I am breathing sighs of relief and thankfulness for my son.  His heart has totally changed from two years ago, and he is really a grown man.

To anybody I forgot ( and to She who shall remain nameless, for now), I wish you good things!

Ms. Karin, where are you?

I think that is all I have for tonight.  Love you all!  Chemooooooooooooo!!

Love,
Sue

Kristy~ that is a cute idea! Your kids will look sback one day and it will be a fav memory of theirs I am sure.

Sue~ make yourself a "I'monchemoandIwantacakedamnitbirthdaycake" I think it covers all corners for you.

Was talking to my therapist yesterday and she said she had just read that they are VERY close to a vaccine for the HER. Too bad they didn't come up with it about 6 months ago.

Hi ladies! <waves>

I have been surprised at how quiet we have been, too. 

Eddie - Sorry you're anxious about the HER2+ thang.  I am hoping the Herceptin does it's job for all you.  Frankly, I'm a bit nervous about the triple negative thang myself, since there's nothing after chemo and rads.  I briefly picked up a brochure in the onc's office this morning about the "Risk of Recurrence", opened it and put it back down.  So that tells me something,  And, btw, I think you would make a terrific political analyst.  I hear NBC is looking...I miss Tim Russert, but I think you'd fill in nicely!

Sue - So glad you had a good trip and that your furry babies are home!  I know I have a funny dd story, but can't remember it right now!! 

I'm generally o.k., but a bit sore - don't know if it's going up or down, so I'll have to wait and see.  I hate that part.  Right now, it's pretty treatable with some ibuprofen.  I guess I can still keep the schedule thing going, especially since I'm on every week.  No questions there!  I think I remember that Jen and Eddie are up (Wed or Thurs?) - anyone else on for next week??

Hi, all! 

Eddie, I'm afraid otter-the-"Nancy Drew Sleuth"/Park Ranger (thanks for that, Sue) doesn't have any answers to the HER2 question.

Herceptin has been a miracle drug for women with HER2+ tumors.  It has made a huge difference in what was a depressingly frustrating situation.  Tykerb is a newer drug that attacks the same part of the BC cell as Herceptin (http://www.tykerb.com/).  Tykerb is taken orally, which makes administration more convenient.  At this point, I think Tykerb is only approved for advanced or metastatic BC in women who've already been treated with chemo and Herceptin.  That could change in the future, of course.  Almost all the drugs being used in early BC were tested first in more advanced disease.

As Jen/Sable said, there is a lot of interest in HER2 vaccines.  Here's an example:  http://www.sciencedaily.com/releases/2008/04/080413163559.htm

Research on HER2 vaccines is still early, but, theoretically, results of work in that area might be used to prevent recurrence in women being treated for BC right now. 

One thing to keep in mind is that, even without Herceptin, a HER2+ tumor is much more likely to respond to chemo, than a tumor that lacks HER2. 

I need to talk about cake.  It's not my birthday.  It's not my dh's birthday.  Nobody in my family is having a birthday until my next one, which won't be until February.   Nevertheless, and paraphrasing Jen/Sable, IsurvivedchemoandIwantacakedamnitbirthdaycake! 

OTOH, I lost 8 pounds since I started chemo, and I want desperately to keep that weight off.  There's a brand new article out that says, "Activity key to breast cancer patients' survival."  Of course.  That's not news, but it reinforces what we've been hearing all along.   I keep thinking it should be easy to find 30 to 45 minutes each day to exercise ... but at 10 o'clock each night, I wonder where that time went.

<sigh>

otter 

Does doing laundry and cleaning the house count as active?????

Hair...I have to laugh at my hair.  DH and I look at it and touch it several times a day.  When I think of it, it makes me think of baby birds.  Have you ever seen a cockatiel baby?  They are the UGLIEST babies, I tell you.  Only a mother could love...lol  I have this down cover coming in.  Colorless and soft.  There are a couple of wayward long, crooked strands but mostly just this colorless fuzz.  I see it and I am so excited.  It is the beginning of my hair coming back.  Hair clips, brushes, griping about bad hair days.......*sigh*

Have fun at the races!  Sending good vibes for no flat tires!

Getting ready to leave for Indiana for my high school reunion.  Taking my wig but not sure it I will  wear it!  (Have these visions of hugging someone and the wig either coming off or slipping-then I'll have to find a way to descretly readjust it), Have scarves as back up-I've only worn the wig a couple of times, so I'm not real comfortable with it.  Should be an interesting evening!

Hope that everyone is having a great Labor Day weekend!

Otter,

Thanks for herceptin info...made me feel much better. Thanks to the rest of you who chimed in as well. I don't know much about triple negative if someone wants to enlighten me...or I can go searching some time. Sable, I start with onc appt at 9:20 so should be hitting the finfusion bar about the same time as you. We'll be holding hands honey. I'm with you. Can't wait for it to be over. We will be swimming next to otter and hugging those who are done on the other side. We will be in training for waiting for each and every one of the rest of you and we will not leave until we are all on the other side and maybe never. Gracie, go commando. Have fun.

We saw Shrek, the musical last night as it is Broadway bound. It was fun and well done; I predict it will do well but I think it needs some work. The same fellow who wrote a lot of Spamalot did Shrek and though the sets, costumes and songs are great, there are so many messages in the show that are good but it doesn't all quite connect.

I am not making any comments on Alaskan governors at this time.

What else? Activities...Karin...activities...Noelle and Otter and Sable and all of us...I am readying myself to lose the ten pounds I have gained. I will be seeing a naturopath and a post-cancer recovery trainer type person. I will continue my "normal" 3-mile walking regiment, but I plan on pumping it up. I have been careful as I was told save energy to get though, but once I get the go ahead and a little help designing a program, I will be on my way.

One more development....I am in search of a foob. I will be discussing with oncologist on Thursday, but it will be step one in looking a bit more normal. Happy Sunday. 

Gracie - Have fun!!!!

Noelle - Congrats on finishing the race - that's a great accomplishment considering where you've just been!! 

Jen - I think ANY activity counts, no matter what you're watching...lol...and 80's vids should have enough pep to keep you going!!

Eddie - Triple neg just means that we are not hormone positive at all and are also not HER2+.  This are both good and bad as far as treatment goes.  It is good because of the non-aggressivity of the HER2, however, my research has shown that triple negs can sometimes be aggressive in their own way.  So I'm not sure about that.  Triple negs (if I'm remembering right - Otter, correct me if you know differently) seem to hit younger women and younger women tend to have more aggressive tumors.  The bad part is, like I said before, there are no targeted after-chemo treatments, like Herceptin and/or the hormone meds.  So chemo and rads are it for us.  I haven't looked into risk for recurrence or anything like that - I'm just not up to it yet.  I know there are a couple  of other triple negs on here - feel free to chime in with what you know!

So...I've spend about 2 hours this morning researching a hotel for next month.  Did I tell you all that I got tickets to take my 9 y.o. to see the women's Olympic gymnastics team?  They're coming to San Jose (about 3 hours from here) next month and I'm trying to find a hotel that doesn't cost an arm and a leg and is close enough to the arena they are performing in.  I'm still in my pjs and they are starting to get restless now...

Eddie and Jen - I'm with you on Thursday, too.  I don't start until 1:30 though.

Activities. I wonder if exercising our fingers while typing counts.

Noelle - Ditto on Congrats on finishing the race. The fact that you did this so soon after chemo makes you a winner.

Gracie - Have a great time at your reunion. Can't wait till my next one.

 Adrienne - Heres a picture of a cockatiel baby about 1 week old so others know what your talking about.

And of course here is my tribute for the day. Remember the Avatar with the sunflowers? Well here is a new one for her.

Enjoy the day, Karin

LADIES!!!!! Ok.... fair warning. I am collecting the pole dance pics for something special. I have Karin's, boulder's, linda's, jean's and sue's...... If you have a pic you want added please post it for me..... if you DO NOT want me to add yours let me know and I won't. Graduating class always needs a group photo