Starting chemo Sept 05

leannem

Oh susan thank you so very much.

You hit the nail on the head and expressed how I am feeling ever better than I could. All of what we went through just DOESN'T go away just because I was misdiagnosed and thank you so very very much for acknowledging that.

My 4yr old still panics when I walk out of the house to take the rubbish out- he doesn't think I will come back. It took him until recently to stop crying out in the middle of the night wondering if I will come in to him of if I am in hospital. My 18 month old is so clingy that yesterday we went to a little kids birthday party and he screamed non stop for 45 mins (lots of strangers) and we had to leave. The are completely affected and it won't just go away because it wasn't mets.

I thought I was going to die. If not from the cancer then definately from the chemo. I remember laying in the bottom of the shower crying for over an hour because I couldn't get up. I couldn't even push the shower door open to call for help.

I have so many things I went through - that my family went through - that I am having a hard time dealing with the fact that it was pretty much for nothing.

Now please, don't get me wrong, I would go through it all over and over again to be given the piece of news I have been blessed with but it doesn';t make what we all went through any easier.

In one way I know what things I have to deal with incase I ever do get sick again (or get hit by a bus ), the issue of who raises my children for example. (My oldest turned 4 yesterday and his dad didn't come to his party or phone until his mum abused him). So I prepared for that stuff earlier than I normally would be. Now I have TIME to work things out, raise my children how I want. I am beyond grateful for that.

Thank you again Susan for completely understanding my feelings. Even my partner doesn't. As a matter of fact, we just got off the phone right now after fighting because he thinks I don't seem 'excited' enough.

Love
Leanne

Liezel

Dearest Leanne,

What absolutely wonderfull news!!!! I am so happy for you, the kids, your family and Scott. What an amazing early christmas present!!! I agree with Susan - the fact that you were misdiagnosed does not change what all of you went through! I think the repercussions will continue for a long time, and will probably never go away. I guess in a way we all have to deal with it on our own, or together here. Fact is our families just do not get it, they think we can just turn things off, as if it never happened. But it did. I am rambling. I am just so happy for you.....

Sandra, hope you had a ball!!

Glad to hear Gina is back at school. Good luck with the surgery on the 22nd!!

I had my port replacement surgery on Thursday. Honestly, each surgery now feels worse than the previous one. The pain was unbearable. They eventually gave me morphine, we caused me to vomit for hours on end. In the midst of all this, my surgeon came to see me. He pulled the curtains around my bed, came to sit on my bed, and took my hand. I started crying. I thought he was going to tell me I am dying!! Luckily not yet! What he did tell me was that the catheter from the port into the vein broke off, went into the vein, and was heading for the Right ventricle of my heart. THey were waiting for a cardiologist, and I had to have an emergency aniogram to remove it. I had the aniogram at 22h00 on Thursday night. Not a good experience.

I feel completely overwhelmed now. Still in a lot of pain. I am now convinced that this disease is going to take me, and soon. It feels as if my body just can not cope with this anymore. Even though I am 9 months post chemo, I feel worse that I did before dx. I am bruised all over, and have absolutely no energy. DH gets very upset when I share this with him. According to him it is time to move on. But I honestly feel as if I am on borrowed time. Stupid, I know, but how do I get rid of this feeling?

Maybe some chocolate will help!! I hope all of you keep well!!!

Liezel

Calico

Liezel,

sending you some virtual chocolate and a [[[hug]]].

I am so sorry you went through this. Gosh, how awful.
You hopefully start healing and then - painfree - regain your energy....and then - have some fun again.

I hope you feel better soon!!!

God Bless

nelliebelle0361

Hi Girls, I hope it isn't too late to join the Sept board. I started treatments Sept 5. Did AC every 2 weeks for 4 treatments. I am now on Taxol+Herceptin weekly, I will have my thrid treatment of this tomorrow. So far this is so much more tolerable than the AC. I saw my onc today and he thinks i'm doing great, he actually gave me a high-five for doing so well. I did terriblt with the AC, so he was definitely happy when I didn't have any complaints today. He has listened to me "carry on" and "carry on" swear off treatments and everything while on the AC. I think he is just about as happy as I that i'm doing so great now. Don't know anyone on here and so far behind with all of you. If you have any advice or tips I would love for you to share. I started on the Nov. board when I learned of these discussion boards. Everyone is so great!!! However, I think this is where I belong. Thanks.

Sherry

nelliebelle0361

Girls,i'm sorry i'm still on the wrong board. I started sept of this year. I'll get the hang of this, maybe LOL

Sherry

Pegk

Liezel,
What a horrible time you've been through! I hope by now you're recovering from those procedures. What an ordeal.
Please know that my healing thoughts and prayers are heading your way.
Love, Peggy

foxxf

Leanne, WOO HOO! WHAT A RIPPER!
I am so pleased for you that i am crying. Great news!

As Susan said, and others don't understand we can't just say "oh well it's over now " and get on with it. It doesn't work that way. We need to acknowlege what we have been through for the struggle that it was an for some continues to be. Yes it was horrible and you have every right to kick and scream and stamp your feet. Be pi$$ed off it is only through venting your feelings that you can set yourself free to really live again. Dare to hope and make plans. We love you and your new dx......

Leizel, do you have anyone you could talk to in the hospital? a social worker/phycologist it seems that this last painfull kick has maybe brought out some fears that you have been keeping bottled up and now they feel overwhelming to you. I know some of the other ladies are taking some anti depressents. With your financial situation, your hubbys new job and you taking on his responsiblities maybe this has just added to the pressure and seem all to much. Sorry for physo-analysing you but just thought these are some things you might not have thought of. Don't be afraid to ask for help, we are here for you when ever you need us.

Congrats on Gina's return to school.

As for me went for the op yesterday and doing well, Dr's appt in 2 weeks for test results will fill you all in then.

Best wishes to all
Nicole

Liezel

Thank you all for your thoughts and prayers. It really does help.

Nicole, I think you have hit the nail on the head. I slowly came to this realisation yesterday. I am on anti-deps, but ran out on Sunday and thought I could wait until Monday to get them. I am feeling much better now, but realised that my feelings, and even the pain is a manifestation of years of pent up feelings and fears. My whole life I have had an unnatural fear of doctors and needles. During active tx, I managed to ignore this, but since September, this has all come back. I'll just have to learn to deal with it again. Sorry for my rambling yesterday.

Nicole, I am glad your op went well. Did you stay over in hosp or go straight home? Good luck for your results in 2 weeks.

I am still so estatic about Leanne's news!!! Leanne, you have been so brave. You are very special to all of us. Enjoy the summer!!!

You are all very special and exceptional woman. You have made the journey a lot easier. My sincere thanks to all of you....

Liezel

txred9876

That is wonderful news Leanne. I also have tears welling up as I read your post!

My story on www.kxan.com will air Thursday at 10pm and there is a sneak preview on their now (under silent killer).

Working is about to kill me....being on my feet all the time. Has anyone else had problems with neurapathy in thier feet from Taxol? I am not sure if the tamoxifen pain is making it worse .....oh well....Keep on plugging ahead!

The next step is to try with several other states to get the first week of october designated IBC week....Washington state has done it...and severl others are in the works. Once we get 10 states the senator from Washington state says she will try and get it nationally!

On to the next chapter!

OH....I start herceptin on Wednesday (finally....so I can finish this part of my journey!)

I hope Gina is doing ok tooo


Tina

lynellb123

Leanne, I can't believe your news I am so thankful that you are OK, I just can't begin to imagine what you've been through. Whenever you are down about ANYTHING, remember this year and what you've been through. You are a survivor with a very capital S- the S could also stand for Superwoman because that's what you've been through it all.

Liezel, I was sorry to read of your difficulties with your port & the additional stress you had to go through. It's just not fair. Enough is enough!

Calico good luck with your upcoming exchange surgery. I hope that it is uneventful & that you're up and about in no time. I was so happy to read that your daughter is back at school.

Yay Tina, you're going to be a star! Good luck with your herceptin treatments. I also hope your treatments continue without event.

Sandra I'm waiting to see those "glad rags" please post a picture when you can. I hope that you're not letting work stress get to you.

Peg, you're looking really great, I'm going to PM you about possibly meeting up in NY. What's your schedule like for the Thanksgiving holiday?

Hello Susan and my other sisters, I hope you are all feeling great!

What is everyone doing for Thanksgiving? I'm cooking dinner & having family & friends over. All of you will be in my intentions when I say grace this year. I am so thankful to my September sisters for your love & support. I don't think I could have gotten through this without all of you!

lynellb123

Whoops Nicole, I forgot to wish you a very speedy recovery after your surgery, I'm sorry I certainly didn't mean to do that. Hope you're feeling a little better each day. Hugs!

Calico

Nicole,

speedy recovery!!


No cooking this Thanksgiving (due to exchange).

How is your memory of last years Thanksgiving?
I just started Taxol and I was in so much pain. My neighbor had us invited but I went back to my couch after dinner - alone. Lots of pain....
So, needless to say...I for some weird reason would like to skip Thanksgiving all together and just go for a hike some place in the woods. Weird?

God Bless

txred9876

Calico, can I join you! I had my first dose of herceptin....had a reaction in about 60 min of the 90 min infustion. More benedryl (via IV). I finally quite shaking and they started the remainder of the infusion.

I saw the pain managment doctor today and she changed my meds to Narco and Methadone. After fighting for my meds at the pharmacy, I started having a reaction again and had to buy some more benedryl (I almost did not make it home and got chewed out by old man and daughter!)I am now fighting a fever and we will have to change my infustion for next time....

I have been having TONS of people ask me if I was the woman on TV! I think we are going to have a good turn out for taping.

Meds are kicking in.....back to bed.....

Tina

linny

Sandra, I also have horrendous hot flushes. I turn red, feel like I am on fire, start to perspire, and sometimes feel faint. They pass quickly if I can get to a fan or now that it is cooler open the door! They wake me up at night, I use a small bedside fan to dry the sweat so I can go back to sleep.

I too feel anxious and upset much of the time, even though I am keeping busy (I was just in New York for 12 days visiting my married kids there, very busy) and functioning well. I am resisting taking meds even though they have been offered many times. I just don't want to feel different than myself.

Linda

linny

Tina, I never had sore knees in my life, now on tamoxifen they hurt every single time I stand up from a sitting position.

linny

Sorry for the disjointed posts, I am just catching up. Leizel, so sorry for your port trouble, I hope things are looking up now. Leanne, I am so happy with your good news.

txred9876

Well...after many months of feeling better (other then my feet for the most part) I felt like crap all day but got many things accomplished.

Ironically....my feet are doing better already@
I am awaiting the news to watch the interview....there is a commercial on about it at the website now...

Tina

txred9876

http://kxan.com/Global/category.asp?C=88763 Here is part of the story...the video will follow

Tina

txred9876

sorry for the multiple posts the video is already up on the main page for now at www.kxan.com

If it moves just search in the upper right corner "silent killer" and the story should come right up.

Tina

susan_02143

tina,

Very powerful. I hope that many women are helped by your willingness to be honest.

*susan*

Liezel

Wow Tina, you are very brave!! Like Susan said, very powerful, and it will wake many people up to IBC.

Getting better every day. Port still painful, but I am told it can take up to 1 month!

Liezel

txred9876

THanks for the kind words ladies....like I told the reporter....if this saves one womans life.....its all worth it! I will talk to ANYONE who will talk to me and my next step is to take it to our local congressmen to get a law passed so we can have the first week of oct (breast cancer awareness month) designation IBC education week. If we can get a few more states the senator from WAshington state will push for it to go thru in congress and make it a national designation.

Tina

txred9876

I hope it works

txred9876

how do you get your picture up there?

linny

Tina, I just watched the clip - it was amazing! You are wonderful to have done it, and hopefully help others.

Linda

leannem

Hi all

Tina- great job!!

Nicole- how are you feeling?

Liezel- I hope you are healing well and feeling better.

Well tomorrow I am off to get my boobs done at last!! I am feeling like I must be crazy to ELECTING to have more surgery but this is really something I wanted to do for ME. I am having them matched back up in size after the lumpectomy with implants and a lift to correct child damage!! I will only be in for the one night and am even having it done at another hospital to avoid 'flashbacks' of the year that was.

Will let you know how it goes.

xoxoxo

Pegk

Congratulations Tina! I just saw your clip today and I learned something! Its definitely a message that needs to get out there. You've made a start. Thank you.

Good luck Leanne! You're not crazy for wanting to do something for yourself and your return to normalcy. Wishing you a speedy recovery.

Thinking only good thoughts for all my September Sisters.

foxxf

Well done Tina, I too will talk to anyone, anywhere, anytime. If I can help, I will. There has to be something good come from all this. I was featured in our local news paper last week, they did a full page to highlight the public forum that was held to discuss issues effecting younger women with breast cancer. So if the whole town didn't already know they do now! I have had lots of positive feedback and we had a good turn out at the forum.

Leanne, thankyou I am feeling well however as always tired.

I have just noticed that I am freaking out a little about going back to the Dr's on Thursday for the test results. Spent most of the day yesterday eating everything I could get my hands on...lol...I think I almost ate one of the kids...lol. I keep telling myself it will be fine and try not to think about it. trying to keep busy instead.

better go take the kids to school
best wishes to all
Nicole

leannem

Hi again!

Just a quick one....

I went to the Kylie Minogue concert last night (not sure if she is big over there at all??) and wow it was amazing! Such the showgirl! It is hard to believe that only 18 months ago she was undergoing chemo too! Crazy.

Between the concert last night and the U2 concert 2 weeks ago I am feeling like quite the concert goer!!

xoxoxo

linny

Leanne, I have actually followed Kylie Minogue's cancer treatment by checking on Google a few times.

Nicole, it is so important to get the message out about bc. Years ago, Betty Ford, wife of former president Gerald Ford, spoke out about her breast cancer. At that time, it was rarely discussed, very much a hidden illness. It made a huge impact that such a public figure spoke up. I think the current open attitude about it is important for all of us.

Linda