2005 ROCK-TOBER CHEMO GIRLS

RoseMarie

Wow! I am so happy for all of you finishing chemo!!!!!
Merrymelodi - you made me cry - in a GOOD WAY! I'm so happy for you.
I have 7 more Taxols to go. I think this is better than AC...at least no horrid taste in my mouth, nauseau, etc. BUT the joint pain is a b....! By day 5/6 the pain starts to subside (feel great today!) And then I start all over again! Weekly Taxol stinks...I was working full time until we moved to Indiana. I'd love to get resumes out there in order to teach next year but with my chemo brain I don't have the confidence I used to have. I feel like saying, hire me - I'm a great teacher - just don't ask me to prove it right now!!
Good luck with work Debbie! In fact, good luck to all of you!!

debbie444

Being as we are getting to the comparing stubble stage, thought some of you may be interested in some information that one of my chemo nurses gave me.
By all accounts we should stay clear of normal hair dyes for at least 6 months after chemo - incase it damages the new hair as it may be weaker.
they recommend Daniel Field Organic and Mineral water colour hair dyes as they are non peroxide and non ammonia colours that can be permamnent, demi permanent or semi depending on how they are used.
i know that they may not be available out of the UK but thought the info may be of some use - there is bound to be an equivalent in the US!

Would hate there to be a group of us with snapped of hair!!
Debbie

Anonymous

Debbie,

I love your poem. Thanks for writing it. It made me smile...

I'm on my 3rd week of rads. Seems pretty easy. I don't have any "sunburns" yet, though my affected breast seems a little more brown than the other. Maybe it's the emu oil working, or mayble I'm just lucky. I'm hoping this continues.

No fatigue yet. Keeping my fingers crossed.

maryannecb

Hi,

just out of 5 day stay in hospital. 1Week after last Tax temp went up. This round I had been giving myself Neupogen to keep counts up. Went to ER and WBC was 70,000! Yes 70'000.

I was admitted ,had the septic workup-blood culture, urine cultures and swabs. Was on IV antibiotics until temp normal x 24 hours. Now am at home again. This was my second admission within a month. I am bummed out about that. It is bad enough to be dragging through this chemo , I really don't neeed this extra stuff.

While in had an US of liver and abdomen which was normal so I feel good about that. If I develop another temp they might take my port out, I love my port makes life so much easier. But I guess if that might be the problem it is worth it.

I read the last 5 days of posts, sounds like most are doing pretty well. Nice poem Debbie!

I still do not feel well and have a suspicion that I will get sick again ...

Fists up!

jackie11

Mary anne, so sorry to hear you were in the hospital again.

I know the feeling since I was in for 4 days with low wbc, (0 neutrophils) in June right after I finished 4 AC dd. It was aweful, I feel your pain. The antibiotics they pumped we with made me feel so lousy.

I will keep my fingers crossed you stay well and do not have to go back.

Take care,

Jackie

Anonymous

Debbie -
I am going to Plya Del Carmen, MX. It's the mainland very close to the island of Cozumel. I will definately say a temporary Adios to all of you the night b/4 I leave.

Mary Anne -
So sorry to hear you were in the hospital again! I hope they can figure all this out for you. Is your port infected? I hope you feel well again soon. Hang in there.

Brenda S. -
Very encouraging to hear you're on your 3rd. week and doing so well. So very happy for you. Keep plugging away!

Laura

ravdeb

maryanne...
so sorry you were in the hospital...again!!! I have such a fear of that, too!!! I hope that you are just getting over the effects of the antibiotic and you will not have to go back in. I sure can relate to all of that...I also was going back and forth but that was when I was on AC. So far so good on Taxol but my energy level dropped dramatically these last two times and I woke with a sore throat! I refuse to be sick!!!!
I do hope you improve and do not have to enter that hospital for that again!!!!! Did they figure out what the problem is?
ravdeb

ake

i'm having tightness in my arm and ribcage...on the area where i'm being radiated. is this a sign of lymphedema? eek?

Anonymous

Maryanne, so sorry about your hosptial stay again!! You will get thru this, we all will.

Laura, I am not talking to you! You get to go on vacation!! Just kidding! I am so jealous of you getting to pick up and go. I cannot wait til this weekly crap is over with and I can figure out where me and my little one will go ........ oh just to feel normal for a few days and be out in the sun.

ake, I don't know. Can you call the advice nurse at your health provider???

ravdeb, I only have 5 more to go then switch to the 3 week plan. I am tired but feeling good enough to get to work, I will leave early tho!!

Anonymous

Terynsmom -
I wish I could take all of you along with me!
Laura

Anonymous

DEBBIE -
Can you please check your private messages?
Thanks, Laura

ake

where the hell is my hair? i'm really getting sick of this cancer stuff. it's been almost a month since my chemo...i want hair!

i'm having a weird time through all this now...i cried a lot in my therapy this week...i just want to forget that cancer ever had a place in my life. i don't want it to be part of who i am. i want to forget it. do we get to do that? i think that's what makes me want my hair so badly.

where is the hair???

Anonymous

Amy -
You soooooooooooooooo deserve hair at this point! Maybe since it's taking its sweet time to start coming in, means that when it does start, it will come in really, really fast? I don't know. Who the hell really does know. Hang in there, rock star!
Laura

Paula15089

Amy,
i am also a month out of chemo. Still hairless! only light fuzz. I have read somewhere that it takes 1-2 months post last chemo for it to start growing, so i am giving it another month before i start panicking. Our bodies dont know that chemo is finished, and mine was 3 weeks apart, so perhaps my hair is waiting for another dose to come in?

Its funny, i can't see any hair, but i can feel it when i am rubbing my scalp! Feels soft, like a baby hair.

Graycie

Laura, Has your hair started to grow yet?

Paula, don't feel bad I just read a post that someone is waiting for their hair to grow after 18 mos....That will be my luck.....

maryannecb

I heard it is 6-9 months before there is effective(you can brush it a bit) hair growth. Be patient, think of all the "product" and hair cuts we are saving on.Tiny ha ha....

Have a good vacation Laura you so deserve it. Have a Mojito for me! Don't forget your sunscreen.

Ravdeb, no focus found on either of my admissions. That would make it all easier to know they found it and it was dealt with. But I am learning that other people have had low grade fever on Taxotere so perhaps it is that. I am not going to go back unless feel sicker and temp is 38.5 or if my WBC get too low. Last count yesterday was 5.0 which is reasonable. Have cbc tomorrow so will see how that goes.

I just feel this new problem has given me a new worry which I didn't need right now. I am sure I will get through it all and soon I will be done the chemotherapy.

It bothers me Amy that you don't have a sudden new sense of health and freedom being done with chemo. I think we all think we will have this once we finish.Though I have read over and over on boards that life doesn't instantly revert to old pace. It will take time to trust our bodies again. We have all been hit with a hard diagnosis. The cure rates are so good for many of us though so if we can only grab the thought that this part of our life is over or will soon be over it might make it easier to get on with our lives.

Amy, hang tough. Though I can not personally attest to any silver linig here, many women declare it so eventually...

Fists up!

Anonymous

Graycie -
I think mine is starting to grow at the nape of my neck, but I can't remember if it was shaved this length or shaved to the skin. But for the most part NO IT ISN'T. I'm scared that it will grow back only in big ugly clumps! That would be horrible. Isn't this amazing...we have been through so much and now we're going through this. I am assuming by your post, that yours isn't growing back yet too? Also, when are you starting rads.? It's got to be soon? Let me know.
Laura

Anonymous

I think it's too soon to be worrying about hair not growing in. I have fuzzies all over but I hear it will take a few months to have hair enough to brush. Remember when we had kids?? My daughter didn't have enough hair to even see at age 1!!!

Right now, I am still concerned about getting my tests done and want the doctor to tell me that I have NED.

ravdeb

The hair thing is a cycle. Remember when we were so worried about losing our hair??? Well, now we are so worried about getting it back. I do believe that most of us will get our hair back; some sooner than others.

Amy..it WILL come back. Give it time and maybe Laura is right..it will just BE there and grow really fast once it's ready.

My daughter checks my head/hair every day. I check it twice a day! It is growing in but seems a bit thin on top. Looks like I may resemble my dad more than I want to :-(

I'm still on Taxol so I'm not going to get too excited or worried about it until I'm done with Taxol and it's out of my system. Still have eyebrows and lashes but I've heard they could go whenever they feel like it. Hmmmmmmm....

But Ladies..we are closing the circle with this search for hair growth. Means we have pretty much conquered the beast...we're almost there!!!
ravdeb

debbie444

Well - had rads planning yesterday. Did the human colouring book bit - had the tattoos done ( no i didnt get hearts - he offered to try but didnt fancy being the practice piece!) I have been given all 30 appointments- i start next wednesday. the hospital i will be going to is in Sheffield a nearby city about 15 miles away. My appointments are all around 9 0clock but i have been told that unless i am in the car park by 8 i will not get a space! Looks like i will be leaving home at 7 in the morning for the next 6 weeks!

Today i joined the human race again - i went back to work, had no hospital visits and took no medication!!!!! ( i start tamoxifen tomorrow so it only lasted a day but it was nice!)

I had to explain to one of my autistic students today why i had a scarf on my head - the other kids too polite to ask!I just said that some strong medicene had made my head feel the cold - luckily he was happy with that. Didnt fancy explainig to a class of 35 that i was waiting for hair to reappear!

Debbie

ravdeb

Good luck with the rads, Debbie!
Interesting way to explain a bald head to a class of kids :-)
From now on, when people stare at me on the street I give them a stare right back. This has embarrassed a few people. Oh well!!!!
Last night a friend of mine at a party that was given for a group of girlfriends, asked me where my hair was! I told her I left my hair at home!!!!(the invitation specifically said that "we will let our hair down")
ravdeb

debbie444

Ravdeb - hope you let your hair down gracefully - noone likes to be dumped just before a party!!!!!

Debbie
Young at heart - body beginning to age!!

marymelodi

Last week at chemo I met a woman who was 9 months post chemo. She had thick, dark hair about 4 inches long all over her head, except right in front. I wondered if she had botched cutting bangs or if it just grew in funny. She said she took about 4 months to stop wearing hats and scarves after the end of chemo. So, I'm hoping by the 4th of July I will be able to go without a head covering, at least inside. I know outside I will be extrememly careful all summer to protect my scalp and new, fine hair. This woman told me her hair came in much darker than it was before chemo.

Feeling ok, now on day 6, after last chemo. Still having mild to moderate pain in feet, legs, back and shoulders. Escaped the nausea/vomiting this time. Tomorrow I have surgery to remove the access port in my chest so that I will have healed before starting radiation in early March.
I'll write to you later.

Graycie

marymelodi, you are so lucky they took your port out so soon. They won't take mine out yet. Maybe because I had a positive lymph node and they want to check my scan's first to make sure all the cancer is gone....I hope they don't suspect something.....here I go being paranoid again. Graycie

Anonymous

marymelodi -
Happy to read you escaped the nausea! Best wishes with the port removal! I am having mine taken out next week. Let us know how it goes.
Laura

Graycie

Laura, I have a little (very little) hair at the nape of my neck also. I think it may have been there from the beginning but it seems a little longer(wishful thinking). I just got the mirror and looked at my head at all angles for the first time in a while and boy do I have an ugly head without hair. I better get my hair back soon!!! not a pleasant sight....
I will be starting rad's next week Monday. I go for a dry run on Friday...I have to have 33tx. Did you say you won't be starting until after your trip?
Graycie

Anonymous

Graycie,
Yes, I won't be starting until April 17th. I will have 26 zaps (5 1/2 weeks). Best to you on Friday and Monday. My head is ugly too! My brother is bald, and for the first time in my life - I look just like him. Right now though, he's a hell of a lot better looking than me.
Laura

TracyNY

My journey is coming to a close. Tomorrow is my last taxol providing my counts are okay. I skipped the neulasta because of a bad reaction and truthfully I had much less bone pain and body aches without it.

I never thought I would look forward to going to that torture chamber called the oncologists office but I am so excited for this to be over I may have to take a pill to get to sleep!!

My surgeon doesn't have to see me again for three months. I see my PS next Tuesday, hopefully we'll schedule the exchange for early April.

I look like Uncle Fester with my bald head and extremely sparse eyebrows. Every morning there are less and less but I don't care, my next treatment is my last, whether I get it tomorrow or not!!

maryannecb

ha ha ha, Uncle Fester! I knew I looked like someone and you are right it is Uncle Fester, with my bald head, scanty eyebrows, disappearing eyelashes and expanding body.

I am seeing my husband at the end of next week. He has been away since Nov, he probabaly won't recognize me at the airport. I can't wait to see him.

Found out today I am in chemopause. My temp was normal all day today so I think I am out of the woods as far as my temp went.

Good to hear the stories of final chemo days, looking forward to ending the days in the chair.

Fists up!

Anonymous

I'M AN UNCLE FESTER TOO!
Laura