Starting Chemo May 2008

Here in sunny California I start dd tax next week and I take 5 pills 12 hours before and 5 pills 6 hours before. That means with an 11 am tx, I have to be up at 5 to take my 2nd dose. Not that I think I will sleep much on those things.  So I will probably bake, if I clean I will just spoil my kids!  Then I can take some in to the nurses. Last time I brought my brownies and just about every nurse came by and thanked me, and you know what?  They were a lot nicer....lol...

Oh yeah, my onc did mention that studies shop taking  super B vitamins during taxol can help stave off se's.  anyone else hear about that?

Just had a news helicopter circling overhead.  We kinda have a murder virus going around.  The county is only like 55,000 and within the last week in a radius of about 5 miles from us there have been 6 homicides..yikes and we moved out here why?

Speaking of tx, since I am waiting to have surgery after chemo, I have a couple of questions (drumroll, enter dr. otter and dr. rock).  If they remove your ovaries, do you still have to be on tamox for 5 years?  I would love not to have to put another thing in my body again. 

I am also leaning very hard towards a prophylactic mast on the left side...I actually had a friend tell me that i should consider whether I was doing this because chemo had messed with my reasoning and once I was done with chemo, then I would really want recon. I nicely informed her that I have always hated wearing bras and since I have nursed for almost 15 years, I would not miss them.  Plus, they would have to bolster up my other side and there goes sensation anyway. Hope that's not TMI [grin].  And seriously, who wants to worry or go thru chemo again.  Sheesh, sometimes people say stupid things.  I think the {WARNING RANT COMING UP} dumbest thing I heard was someone explaining to me that I need to consider if my dh is a boob man and then factor his opinion more heavily then mine.  I told her that even if i was a balls woman, I would want him to make the decision since  its the person, not the body you marry.

Ok, back to more sunnier subjects!

I am going in to the kitchen and make some more banana bread.  The kids ate the last batch in less than 2 days. Must be doing something right.  Maybe I will try making chocolate b bread, I'll put in cocoa for some of the flour and then I will get my fix.

enough for now, still waitng for my nude therapist...randie

Okay, seems like everybody but me is on steroids!! Hope those of you who had tx yesterday or today are doing well...I'm a week out from the next-to-last TAC, and I finally feel better today.  Eddie, I have to say I can't tell you how many times I have already shared the mountain analogy about being halfway NOT being at the the top where you can just coast down the rest of the way.  It made me cry when I read it, and I have shared it with a bunch of people since then!!

Noelle, I hear you on the from-the-neck-down thing. For whatever reason, I have gained about 20 pounds in the past 7 or 8 weeks--onc says a lot of it is water, and will come off once chemo is done, but I am eating a lot too.  Seem to crave carbs and sugar--but I'm being as good as I can and having a lot of salad and fruit.  I am going back to work Monday, and don't know if I have anything to wear! (Wait--I think I have some fat pants way in the back)....Anyway, I can't wait to get more normal, for chemo to be over, you guys all know.   

Randie, I also started out this journey wanting a prophylactic mast on the other side and a hysterectomy. I remain undecided now, and will wait until chemo and rads are over to decide. I was told that no PS will touch you until 6 months after rads, anybody else hear that?

Eyes,  I am getting TAC X6 but know I am in the minority. It could be a regional thing, was your original TAC tx in Texas? I did have 2 positive nodes and "extracapsular invasion" and "abundant lymphatic and vascular invasion"--my Aunt Charltte, retired nurse says TAC is old and proven--so I have high hopes.  Yesterday at the grocery store I was standing looking in my purse for my keys and a guy comes up beside me and asks "do you have cancer?" What lines rolled through my head--No, just wanted to save some money on shampoo, Yes, why the hell else would I be bald, I just said, Actually I HAD cancer, but I am going through chemo......He said, well I was diagnosed 5 years ago and I am still here..I know where you are....I know he was trying to help me but does anyone else find this incredibly intrusive?

My son is leaving home in the morning.  We are taking him out to dinner tonight. Pray for me, ladies, because I will need it tomorrow.

Love,

Sue

P.S. Sable, I love your expression too. And rock, you do have pretty eyes. 

Lucy I'm home! Everything went really well and I only got one stick!!!!!!!!! I told the lady to take her time and then stick me fast and she got it in one shot. This time I didn't cry from all the sticks but cried with relief. No allergic reactions it all went smooth. I was do for one lemme tell ya. Eddie I thought of you throughout How'd you do sweetie???

I asked onc about the b6 he said that would be very good to take along with this. And that DD taxol should have less se's, that's what he has come across so far. My thumbnails have darkened a bit on both hands from the a/c. He said we will have to keep an eye on that and to expect them to change colors at least somewhat. All the nurses were so exctied I only got one stick this time. they know how bad this has been for me so far and they kept coming up for hugs and congratulations. What a relief! I can't stop saying that LOL

Noelle~ babe I'm with you on the mast bras... they suck!

Yeay Sable!  One stick!! Good girl!  You were so brave!!

Yippee!!

Mast bras do suck.  I have started (on the rare occasion when I wear a foob) doing the following:  I wear a camisole which fits me tightly.  I pin the foob in it with three safety pins.  This eliminates the problem of the foob being perkier and riding higher that the boob I have left.  It works well and is relatively comfortable.  I think I want to throw those mast bras away.

Who's with me?

Sue 

Guess it's time I chime in with my bio. It has taken me a while because you all seemed to have gone the professional route and at first that made me feel separate from you.

I grew up in a very upper class town. At that time it was the 13^th wealthiest in the state (not that my family ranked up there). Seeing how hypocritical every one was it turned me into a rebellious teen of the 60's- early 70's.

My dad died when I was 16. Because of this my mom worried that if something happened to her who would take care of her children. I had 2 sisters one 3 years younger the other 8 years younger. Her solution was to cut the apron strings with me, throw me out @ 18 and make me grow up.

I floated around for awhile from friend to friend then entered college on an EOF grant. I attended for 3 years. The 4^th year I didn't qualify for because I made over 2 thousand; had to just to survive. Financial aide told me to sign up and use social security from my dad. My mom (and you thought your moms were something) told me that he was her husband before he was my dad and that if I signed up for it, it would cut down on what she received for my two sisters. If I did it she would cut me off from the family and disown me. I had already been there done that didn't want to go that route again, so I didn't use what I was entitled to. Thus I never got four year degree.

During my time at college I had done an internship working at project Head-start working with 4 year olds. I loved it. So when I couldn't finish college I got a job at a preschool working with 4 year olds. During this time I got married, got pregnant then gave birth to twin girls.

My husband was an over the road truck driver, so I was home with my daughters. When they started school I worked as a substitute teacher. Things got tight and I needed a full time job. Didn't want anyone else raising my girls so I found a job as a courier driver working while they were in school and home before them. It was great because during the summer they rode with me.

This job felt comfortable. I loved it. It was a private courier. My main customer was GE. Pick up and drop offs were not time sensitive. Perk of the job was I could stop and shop along the way as long as I docked my time. I did this for 15 years before realizing I wanted something more. So I quit and went back into the school system.

All my adult life people have joked about me being a kid magnet. I am currently a first grade paraprofessional. I LOVE my job. I sometimes wish I had gotten my degree so I could teach but recently I discovered that is not what I was meant to do. These days (no child left behind) teachers have too much red tape crap they must do. It robes them from what they want to do. Parents are too busy making a living they miss time with their kids. Don't know if you're familiar with the term but we are abbot district. I as just an aide am able to give the kids the love, attention and encouragement they might be lacking from home. I KNOW I have made a difference in many of my students.

That's it, that's me. I can't wait till September gets here. Where the kids weren't allowed to give me hugs during end of year because of chemo, I had told them when we come back to school in September, when they saw me in the hall to give me the BIGGEST, GERMIEST hug they could.

Enjoy the day, Karin☺

Karin, Degree! smegree! Sounds like you got an honours degree from the "school of hard knocks". That is what my Dad tells people I got. I was on financial aid at the one of the best schools in the US ( thank god for being a non-white female international student, 'cause god knows my marks did not get me into the place) and had no clue how to cope academically so screwed it all up and got myself booted out of the place by failing out (I call it dropping out now, because in hindsight I realise I must have made some sub concious choices to make it happen)  

I think what you are doing is awesome! I hate the mess the gov has made of teaching here and wish my kid had someone like you in the classroom!

 Otter, i have a mast bra and it is better then any homemade thing I have had. Regular bras with stuff stuffed in them was not working because of the fit of the band and such.What i do not get is why the prosthetic has to be so damned heavy. It hurts my scar, it hurts my shoulder it is stupid! I am an perky A cup so having a pound of rubber on the one side is totally foreign. My proth is an adhesive one  ( what a riot to have a stick on boob, let me tell ya) but they say it is too soon to wear it that way with such a new scar) Don't even get me started on finding a mast bathing suit for competitive swimming! NOT one of the companies that makes suits for athletes make a mast suit. Somehow doing a triathlon in a Sears or Lands End mast suit will not seem right. 

 Today I had someone ( a total stranger who knows me through my store and such) ask me "how are you doing" and I said well chemo finished a week ago so it will be sometime until I feel normal again but today is a good day. She asked again "but you are fine now?" I gave her some answer but it upset me a lot. I was standing there bald, and clearly lopsided in my tank top a week out of chemo and some stranger wants me to tell them that I am healthy????

WTF???? Yes dear Library stranger lady, my boob grows back a little each day, just like my hair and those cool doctors cured me with that magic medicine. It was just like the vacation really! I thought I would gain 20 lbs while I was there! 

It was up there in my top 5 most annoying encounters with people, and upset a lot!  

 Today, I am trying to think of the pat answer for people, because clearly I am going to get this question a lot.  I want my answer to be not impolite ( I will have to use it ih the store ) but enough to the point to make them GET IT and shut the F * up and never ask such an insensitive question again. 

 GRRRR! Chemooooooo!!!!

 Noelle  

Well, my night owl son decided to leave tonight and drive all night, stop and sleep, and get there sometime Saturday.  He's going to Pittsburgh, which is about a 20-hour drive from here in central TX.

So, we went to dinner together, my dh, ds and I and he has left.  We cried a little in the kitchen after he drove off.  It's weird to realize that our days of raising children have now ended.  I know he's not leaving our lives, but there is no doubt in my mind he will not live at home again, because he is ready to go.

So, any spare prayers for my son traveling to Pittsburgh tonight and tomorrow would be appreciated. He is traveling with a greyhound and a husky, in a Mazda 626 which also contains everything he owns now--clothes, bedcovers, books, dishes.....

Talk to everyone tomorrow.  It's been an emotional day..

Sue 

Noelle,

Thanks. It is (any consolation)....woke up early and the first thing I wanted to do was call my son--but I'm not.  

Off to walk.  I did have a good sleep, by the way.  Chemooooooo!

Sue 

"I think they generally try to avoid transfusions unless your hemoglobin goes REALLY low, like under 9."

Ummmm... my counts are in the 8s, if memory serves me correctly (I delib left my CBC report at home because I was poring over it too much.). But! But! Lets focus on the positive!  The nurse said she had no problem going ahead with the infusion (w/o transfusion) because I seemed to have a lot of energy.  (I am a little bummed, though.)

Gracie -- The "royal/parade wave" ! THAT is a wonderful hand signal.   I love it! I'm using it!

My BRCA results came back after 3 or 4 weeks. My little sister's should take less time because they knew specifically which mutations to look for (i.e., the same ones as I have).

Gonna post and read some more, then post again. (Only have a few more minutes on this computer. Am in DC.)

Karin -- Yep, people in the schools who are good with the kids are pretty much everything, as far as I'm concerned.  And often the difference between a kid having a love of going to school, learning, reading, etc. or having  disengaged by the 7th grade.  I can name every one of my grade school teachers.  But then... well, it gets a little hazy.  And what a good para can do for a kid who's struggling is the stuff of which made-for-tv movies should be made.

Noelle-- When someone says "But you're fine now, right?" or something similar, I always feel weird, like I am going to have to either lie or answer "against" myself, "Well, I've got anemia, a gene mutation, and an aggressive-acting cancer so I'm not sure I'd say 'fine' at this moment..."  I liked the answer you THOUGHT about giving.  I think that "Yes, my breast grows back a little bit each day. Cancer and chemo have been a lot like a visit to a spa, really" delivered with an earnest expression until the person realizes the idiocy of their question seems a good way to go.  People mean well. But sometimes those good intentions are quite tiresome.

Randie,

I read your post about having a prophylactic mast and I am considering the same thing.  I never want to go through this again.  My dh's mother and my first husband's mother both had breast cancer and both had it second time in the remaining breast about 15 years later.  This is hard enough at 50, I don't want to deal with it at 65.  My dh is definitely a boob man, but he loves me more than he loves my parts.  I still have to figure out the insurance issue.  It will only be about another thousand dollars to have a double masectomy as opposed to a single which we can afford.  However, the reconstruction I want is ten thousand per breast.  My insurance will pay for one, but may not pay for the other.  So I've been joking with friends about doing a fund raiser, "Buy a Boob for Kathy"  They laugh, but say they'll support it.  I also had a question about the pills you are taking before tx.  I start Taxol on Monday and my doctor has given me an rx for Ibuprofen and my nurses have suggested the B6 and B complex vitamins, but what are you taking?  I read a post about icing feet and hands during infusion to reduce neuropathy which makes sense to me since they had me suck on ice cubes with my other infusions to diminish the effects on my mouth from those drugs.  About your ovaries, I am considering having mine out also, just because some of the drugs increase the risk of ovarian cancer which is hard to detect, but your dr will probably still want you on an arimatse inhibitor because your body still produces some estrogen.  I know how you feel about not wanting to put anything more in your body though, I hate that part too.  I was one who would rather take an ice pack to bed with a headache than to take an aspirin.

Kathy

Eddie & Sable - Glad to hear that the first time Taxol went well . . . was thinking about you both yesterday.  Interesting that I seem to be the only one that does not take steroids prior to a Taxol treatment, I get them in an IV bag the morning of treatment.  Gives me the jitters all day.  Hoping you have minimal SEs.

Sue - My PS told me to plan for the swap surgery between 3-6 months after radiation is complete.  Generally (here - MN), he indicated that they perform the surgery at the 3 month mark.  I will be having radiation, but I have not yet met with the rad to have them weigh in on this.  My tumor was against the chest wall and only had a 2mm margin, not the 5mm that they prefer to see, thus the reason for radiation.  It was scary to read the stat posted that it only works on 1 of 20 women. 

I bought two expensive mast bras that I have yet to wear, I am up for throwing them as well.  While shopping for a some new baseball caps, I ran across a Champion Cami bra - that actually has normal bra straps and room to stuff!  It looks like a modified bra (not a jog bra and does not have the classic champion circle in the back - lovely).  I showed it to the folks in my lymphoma class and they thought it looked nice - FWIW. 

Gracie - lol at the parade wave, I so have to use that!

Happy Friday!  Jean

(((Sue)))  Sending safe travel vibes to your son.

Jean,

You said "It was scary to read the stat posted that it only works on 1 of 20 women." What only works on 1 of 20 women?

Enjoy the day, Karin