Any May 2009 Chemo Starters?

thank you sukiann and deb6563!

taj72--awesome news!! God bless. :-)

deb6563, no, i'm sure you wouldn't have done this before chemo but there are SO many more feelings and thoughts running through our heads that i think we're not even aware of and your mcdonalds trip was just a trigger. i work in manhattan so i'm around the public constantly and trust me...the stares when i'm wearing a scarf as opposed to my wig are quite disconcerting.

i feel like telling them, "you're a mammo away from being me so stop staring!" how awful is THAT for me to think???? ugh. i hate it but it's what i'm thinking.

people just think "they get it" and they're so wrong. they can't unless they walked the walk.

cs34- I have been told repeatedly by my onc and my clinical trial nurse that this is NOT the time to give any thought to losing weight. They tell me nothing is off limits to me. Obviously healthy choices are the best, but they just want to make sure that I am eating. So far, I have maintained my weight through three treatments. This is not the time to be dieting. I appreciate what they are saying to you and understand that they mean it out of love, but their timing is not right. Maybe you could use this time to make a dietary and exercise plan for when you are out of treatment. Have a plan in place to get healthy AFTER you are done with chemo. Right now, as someone else said, your priority is to save your life.

Have you discussed it with your onc? Maybe they will listen to him/her. I know what mine would say because he has said it already...repeatedly. No dieting!!!

Hello all May marvels

 I haven't written in a couple of days but I have been keeping up with everyones post.  I have waited to write because like many of you I have been in a funk.  I have nothing nice to say.  Nothing funny or uplifting I am just p' d off at the world.  I have a count down 'til chemo is over - 28 days! but lately all I keep thinking is great but when chemo is over then its rads and when rads are over then its herceptin until May of 2010 then it is hormones til 2015 and all the while waiting on pins and needles after every mammo praying to god that I don't reoccur.  Not to mention all the SE in between and being bald and feeling like a monster because everything female is about gone.  I should probably just stop for now because like I said I am just in a ranting.  sorry I don't mean to bring others down

 best of luck to everyone

deb6563- Throat sores!  How awful!!!!  You are absolutely NOT a chemo monster, you are a chemo survivor and everyone else has to understand that or just get out of the way.  This is one time in your life you can truly say it is ALL ABOUT YOU and if someone doesn't get that or doesn't like that TOO BAD!!!

Sukiann- I've been out shopping too!  I'm sure my husband is noticing I've been doing that a lot lately, but I consider it retail therapy.  It's about the same as regular sessions with a counselor but I feel much better when I'm done. 

Thanks for the kind words everyone.  You are right Janet,  it is not like me, that is why I said I have turned into a chemo monster.  I am only getting the steroids in IV before chemo, I refused to take them for the 2 days after, because I knew they would make me gain weight and that is the last thing that I need. I am maintaining my weight but as little as I am eating I should have lost 20 lbs by now.  I feel like a bald sumo wrestler.  My onc called back this afternoon and decided she wanted to see me about my throat sores.  I went in and she said they were nasty.  She put me on a liquid diet for the next two days (like I was gonna go out and eat steak or something..geez) so I had ensure for supper and hope to eat some ice cream to freeze the sores later tonight.

Several people have sent me private messages and asked about the draino story.  I posted it quite a few pages ago, so instead of sending each of you a private message back, I will just repeat it here.  As you know # 3 has been the worse so far and it took me a couple of extra days to bounce back.  Hubby told me he didn't understand why it was taking longer for me to feel better this time.  I told him that I would put draino in his coffee for a few days and see how long it took him to feel better.  He shut up after that. 

I've tried to stay upbeat and laugh through all this and at least I am making other people laugh when I don't feel like it myself.  That is why I said I felt like vultures were circling overhead just waiting on me to lie down so they could descend and devour me.  Everyone is talking about exercise and the closest I have come to exercise since chemo is watching Jon and Kate run after the eight. 

Is anyone else journaling?  I am trying to write down all my bad experiences and my funny thoughts so that when all of this is over, I can go back and read it and get a good laugh.

I am outta here for tonight.  I am going to go let some ice cream melt in my mouth and slowly trickel down my sore infested throat. 

cs- my onc told me to eat whatever and whenever during chemo simply because we need all the nourishment we can get right now and there aren't that many opportunities for me to 'want' to eat anything!  SO, you were right, looks like we are all starting to agree that now is not the time to worry about losing weight, for crying out loud we are getting poisoned to save our lives!!!

Deb- embrace that inner bitchdom!!  She is who beats cancer's butt!  Kinda sux that we might give a few black eyes on the way, but I figure it is all part of the process.  I hear ya about the staring.  I was somewhere the other day and just yelled out the window, "why are you staring?!"  My son was mortified..........oh well! 

Mary- hope that day 2 is treating you well.

I had some V8 Fusion (mango/peach) blended with ice and rum tonight........it was so good on such a hot hot hot humid summer day.  I finally relaxed without the xanax!  YEAH for me!  Ok that is it for now.  Good Night MM's!

Titch is around...... but not online much at the mo.....main reason I have continued to work full time, and as I have not been with my employer very long, I only get so much sick leave (and I am pre Masectomy so I am trying to accumulate Time in lieu for when I need it)  my boss is great and very flexible with my working hours but I am kinda a legit person and tend to work extra hours over my normal 8 hour working day (why I physically can), so I don't have to apply for leave.  This week, I have been averaging 9.5 hours per day, and when i get home, I just want to lay on the couch with hubby and relax.  Hence why I just pop in and Say Hi.  

I  had my thrid treatment today..... and I normally feel tired the day of treatment.  I saw my Onc, and she is very happy with the treatment.  I have one more session and she does not think I will need further chemo, but said depends on the masectomy findings, and what the surgeon says....but she thinks they will do radiation over further chemo.  I have to see my surgeon soon  to see what is the next plan of attack.

Onc was amazed at my very minimal SE,for round 2 (flushes and wakeful nights with the steroids)  and nothing else.  My blood cells are absolutely normal also.  Also how well the cancer has responded to my chemo.....    She reported it is much smaller (my lump was nearly 6 cm) and she said it is definitely away from my chest wall now (I didn't even know it was there).

She said it contributed it to my diet.  The vitamins I have been taking and most importantly my ATTITUDE, she said my mind is so positive and it is definitely helping me thru the treatment. She said it is not very often you see a person going thru treatment looking absolutely normal.  I am just thankful I am able to live my life as normal as I can.  She was also surprised I went night clubbing hehehehe.

I saw my boss this week for a catch up, and when I was diagnosed, she put in a plan which was on worst case scenario.  I was given a laptop to work from home, and only do what I can. She changed my role to a more administrative one with no people contact.  She then got a replacement person to do my normal job.  But I was well and approached her to continue my normal job (I work with offenders in the community, work closely with court and also go into prisons) she allowed me to carry on status quo, and we had the back up plan if we needed it. My offenders were made aware if they were sick, they needed to let me know and someone else will see them (and all have seen me since.)  My Boss reported my work has not faulted at all, she said she could only imagine the stress,and yet it has not affected me and I have still maintained high standard work. Every day I go to work - I get dressed in my corporate clothes, and go to work.....when i could easily stay at home sitting on a laptop and (really cruising)... To me it gives me a purpose to get up.

I have been very lucky I know to be able to do this.  Every day I "touch wood" when I say how lucky I have been..I really have empathy for you all who are having the brunt of it......cause I know even today my whole world could turn to the worst.  Tomorrow us a a new day and I am always hopeful it will be the same.

I am away with my hubby for 5 nights and leave tomorrow.  I may get online otherwise I will catch up with you May Marvels upon my return..... I am looking forward to  it as no kids (wahoo) we are travelling (via car) to Christchurch which will be a 14 hour drive (at least) and also a 3 hour ferry trip. (one way).  We intending on driving home too, but  will see how I am..... it is a long way......  otherwise I will fly home......  I am looking forward to no work and catching up with family and friends.  So much to do in a little time. 

I have babbled on tonight.... I apologised... U know how u just get in the mood to say something...... I am sorry I have treid to read but the tiredness is kinda overwelming..... alot more energy I don't currently have.

Take care all u wonderful ladies.  Each day i think of you all.....

Zuzee... I mentioned to ONC this May  starters Chemo webiste....... and said out of all these people from all over the world, I had met one other kiwi... and you were her Onc also...... didn't mention names.. She was amazed at how we had met online, and support  each other with our similar experiences.  It is a pity our ONC can;t help you all. To make matters worst she is a canadian oncologist......so she immigrated here.....

texasrose .... I did read about the steroids.... I am on them for 3 days from chemo treatment day.  I have fluctuated minimally with weight.....  each weigh in I have been up or down 4 kg.  But nothing major.  I have had NO nausea at all for all 3 treatments.  Not even feeling icky..... and I thank the steroids for it.  I can work full time, flushed and wakeful at night.... but I couldn't have worked if suffering nausea.  My hubby said I should try and lower my dose of steroids.  But I haven't I am very happy status quo, for me weight loss / exercise will be a priority after treatment anyway.  At the moment the whole focus is being cancer free.   I don't have the extensive energy to maintaining an exercise regime.  I am only getting what I need to get done.... and dieting, I think could be detrimental.  I use alot of food to give my body what it needs to balance my possible SE, so that I am not depending on the drugs to do it (ie constipation / diarohea(sorry can't spell it).

Titch

Don't forget Libby our onc says red wine is good for you. Has reservatol which attacks cancer cells. Have a wonderful time in ChCh  and look forward to seeing you back here again soon.

Girls have to tell you I went out for lunch today with a great guy, last time we met was just prior to my hair loss, 10 days ago,  and he liked my new look today, the wig.  No wonder I don't want to put on weight and keep playing golf. The things we do to attract a man. Why do I have to meet him now during all this drama? But it is keeping me sane and happy and looking to the future. Is any one else in this boat, single and dating a new man with the new wig look?

Have a wonderful evening

Hugs Susie

zuzee, i think that's AMAZING that you're starting a relationship (and he's making you comfortable) at this stage! oh my goodness...i'm so excited for you!!!

remember, you control the "drama" with your attitude also. just be yourself. any man that can make us feel comfortable during this journey deserves to be a saint!

i just started looking at myself in the mirror (for longer than a second) at my bald head and to think my fiance has to lay next to it and look at it most of the night is amazing to me. i don't know how he does it.

anyway, take it one day at a time and enjoy every moment!!!! keep us posted on all the juicy details.

deb6563, LOVE, LOVE, LOVE the draino story!!!!!! OMG---loved it!!! and i am sorry to hear about your sores.

sukiann, you said you could use a laugh...are you ok?

cs34- Good for you! I know your friends and family mean well, but they have NO clue what you are going through. This is all about YOU! You have to do whatever you can to get you through this. (((hugs)))

taj- In my chemo brain state I think I forgot to congratulate your mom on her good news!! That is awesome and I am so glad that it has helped her mental attitude as well. Would she ever post here? We'd love to give her some hugs and encouragement!

Lori- (((hugs))) honey. We all have days like that. It's okay. Vent away.

Titch- You wear me out just reading all that you are doing! LOL Keep it up girl!! You are doing great!!

Day 3 of AC #3 here and I am wiped out. So tired. Sore throat. Nothing tastes good. No nausea yet but still on Emend. Got my Neulasta shot yesterday. No bone pain. Going to be a very low-key day around here today.

Hugs to all.

I'm exhausted reading all that Titch is doing these days! After chemo #3 on Monday I managed to do one thing each day fitted in around some naps. Half way done like many of you - hooray!!  The next half will be a different potion - I hope it is no worse for side effects and  all will be well.

One thing I have learned reading these threads is that maybe it is not so bad that I am triple positive. I thought having more meds for the next half of forever wasn't so great and now I think maybe it is extra insurance. Is that the consensus?

Hello again

 Thanks to everyone for the understanding.  I am doing better today - Nothing has changed-  I am just not dwelling on it today.  Madge thanks for the kind words.  I am not reading the book either just like I probably won't go see "my sisters keeper" anytime soon.  We do have to just laugh about all of this or we will go crazy!   I know what you mean about the mindless TV.  I keep telling my husband that I need a "project" and something besides BC related BS. 

Joanne- hope you are doing well

TexasRose and lassie- hope you are making out ok

Taj - great news for you and your mom

CS34- let us know how you make out without the 'roids.  I would be interested to know.  my biggest SE so far is the bloating and sleeplessness and the emotional crap and I think most of that comes from the steroids

Titch and Zuzee- you go girls! 

gmp300- I did check out that thread and you are right - hilarious - I blame it on the Catholic guilt

 Janet - I plan on having a post chemo party - Not sure how I am going to theme it yet - Loved your idea - I think I am going to call it "breast-fest"

 Ok so here is my story for the day.  Today the UPS guy pulls up with a delivery.  I told my 16 daughter to go out on the porch and meet him because I did not have my hair on and I did not want the dog (our 5 year old Pug) to get out since he is the type to run -  I was walking around the house bald so I just wanted to hide in the kitchen.  I thought for sure a 16 could handle going out on the porch and getting handed a 2 pound box  - but since she is 16 there of course were a whole lot of why's and what fors and how comes and by that time the UPS man rings the bell.  She opens the door wide open and guess who runs out of the house.  Now I have the UPS man waiting for someone to hand the package to and a pug running around the front yard and a 16 year screaming "MoOOOOOM"  and I am in the kitchen bald and all my head coverings of any kind were not in sight.  By this time it is painfully obvious to me that the UPS man is about to get flashed.  He was a little shocked but didn't say a word.  So now I am holding the box in the front yard trying to convince a 25 lb pug to chase me into the house.  Who is the master?  Him or me. All is well but from now on there will be some type of head cover in EVERY room in my house.

 HUGs

LORIR:  Your UPS story is so funny.  Several of us have teenagers here, so I'm sure we can all relate.  It's hard for them to have a mom who's sick and may not be able to do everything (like answer a door and get a package!)  I'm glad you're doing better today.  I agree that having a project is a good thing.  I have to keep my mind busy with things that are not cancer related or I'd go crazy.  It's hard because, as a teacher, it's summer so it's naturally a slower pace, but I still need somethings that are "normal" to keep myself feeling "normal".  (by the way, my 19 year daughter is absolutely bugging us to get a pug to join our shiz tzu!) 

JOANNE:  I am so sorry for your implant problems.  Is this the first problems you've had with your implants?  I am looking into my possibilities for reconstruction after chemo...you've certainly given me something to think about.  I hope you recover quickly and completely. 

TEXASROSE:  Hope the side effects are starting to lessen up.  Hang on.  We're almost half way through this. 

TITCH:  I agree with you completely.  ATTITUDE is everything!  This is not an easy battle we're fighting, but why make yourself more miserable with a stinky attitude.   We must keep our positive outlook and embrace optimism.  That's why I had friends over the other day.  To laugh and have a good time.  I have been keeping a journal through this journey, and I try very hard to keep it positive.  I even go as far as to list  "Daily Good Thoughts"  (and I'll tell you sometimes I have to think really hard to come up with them).  But, if you try, there are always things to be thankful for....things like having medical coverage to be able to receive treatment....finding great doctors....having the help of family or friends...or even, finding these discussion boards.   On bad days, it really helps to go back and be reminded about all the blessings. 

Take care everyone.....stay postive! 

Janet

Loril- Man i needed a laugh thank, too damm funny

Titch- sure your already gone by now, but have a great trip- you certainly deserve it, you hard worker you

Mspig- glad you only have one more to go, ill be rootin for ya

Madge24- i know what you mean about crying, ii even cry during commercials lol!

lassie11-Im not a triple pos, but i didnt know they switch up the meds half way thru, what will they use on the second half if you dont mind me asking?

Jaelsne- Im sorry you had problems with your reconstrucion, my dd had the recon 2 years ago, the one where they take it from the stomach, she got an infection in her stomach and they had to go back and clean her belly out, but her breast looks so good now she even had the nipple put on, ittook about 6 months after all the lumps and bumps were gone but last time i saw it, i clapped and jumped up and down it looked fabulous, so if you do decide on that, other than her infection it went great, hope this helps and good luck with your recovery

Janet- what a wonderful idea about the journel

Today i had shot #3 in arow for the N shot and the first 2 was minimal bone pain but tonight it hit me like a ton of bricks my arms were pulsating with pain and it radiated in my back and chest, i took my last pain pill and it didnt help so i found some old pain pills my dh had from last year and even tho normaly i wouldnt have done that i took 2 it helped alot so hopefully the rest of the night is ok, i will get another blood test tomorrow to see if the shots helped and raised my wbc so i dont have to get more till next chemo

Has any one had problems with there fingernails or toenails?/ my nails are like stubbs now they just break off and my toenails look almost wrinkly and a weird color, any one else expericeing this?

Lastly, my story of the day was, my girlfriend barb and i went to the matinee, (saw the proposal was really cute, and funny,) anyway on the way back, were chatting and laughing and i looked over and a car with 2 teenage girls, one in the front passenger seat the other in the back seat was looking at me and pointing and laughing, they were probably about 15 or 16 yrs old, enough to know better, i just could not believe it i wanted to cry,my friend barb said maybe something is wrong with the car,she was trying to make me feel better but we both knew that wasnt true, she thought one of them was her student in school and said she was a very rude little girl, but i think it was worse than when people stare at you, because they usually look like they just feel sorrry for you and then turn there head, but these girls just looked straight at me and laughed, i mean did they think i shaved my head for the fun of it and went and got the most stupidest looking hat i could find for there moran ass selves, what a bunch of brats and what kind of parents raised theses girls to be so mean, it hurt me so bad i cryed when i got home, well i feel better now since i got to vent!!!

Debbie - my chemo is called FEC - T. The first three cycles have been the FEC (Fluorouracil, Epirubicin and Cyclophosphamide) and the next three cycles are Taxotere, also known as Docetaxel) and Herceptin will start with that. From what I have been reading here, most of you are on some other sort of program. I just took what my well reputed oncologist said to do. The first half wasn't too bad. The clinic is really good about automatically putting into place things to reduce side effects. So I had a popsicle or ice chips with the one that could cause mouth sores and with the Taxotere, will have ice booties and mitts to avoid damage to finger and toenails.  They know what to do and offer such things without patients having to figure it out.