2005 ROCK-TOBER CHEMO GIRLS

My port is getting installed on Wednesday and first session should be the week after. Only four rounds. I can't wait for this journey to come to an end.

Hi Constance, I am having a port put in in two weeks. I too, am absolutely petrified. After reading your post and the replies, I am going to demand a general anesthesia. I have already had a mastectomy on the left side in August (Sentinal Node positive), and an Axillary Node Dissection, two weeks ago (11 nodes removed - all negative). The port insertion is in preparation for 16 weeks of chemo! Sorry you had to go through that, but thanks for sharing it.

I thought I was cured of my depression until I got my diagnosis. Then this black cloud over my head just wouldn't go away. And I thought I'd never be happy again...
So I started taking Paxil, and at the very least I am being a good wife and mom again. And I am working on not missing my second graders that much (I hardly know them since I left them 2 weeks after school started, but this has been my life for almost 20 years).
I'm scared to death of doing chemo...especially after Melissa Etheridge's interview!! I will only do 4 rounds, but the drugs are the evil A and the evil C (no T). Maybe I'll go outside my body when that happens and think of A/C as my friends.
Will I ever be my old self again? Will I find happiness in the same things?
Thanks for listening.

Hi Octoberettes!

Just wanted to drop in AGAIN and say hello.

As is her usual, NoSurrender posted some words of wisdom for you guys. She is so AWESOME! She's been through so much and I can honestly say that we have greatly valued her input on our "June 2005" thread.

There's no question that this experience will absolutely change your life. You'll have some really rotten days, but you'll also have some moments of clarity that you can only gain from going through this type of thing. From one Breast Cancer Sister to another, you will come through this and be a stronger, more enlightened woman for having done so. We don't get to choose all of our experiences in life, but we do get to choose how we deal with them.

I also miss that innocent feeling as if Cancer only happens to other people... ya know, not me. I struggle with the scary "what if" thoughts but then I try to chase them away quickly! I tell myself nobody knows what the future holds so assuming the worst seems a bit silly, right?

In case you'd like to read about my experiences... here's a link. Dana's Journal

Anyway, I guess I've rambled enough.

Hugs to you all!

Thank you Dana- You all did it yourself!

Brenda I felt the same way. When I was diagnosed, I found myself mourning the "old me". I felt that with the diagnosis that somehow *I* was removed. And then I would project ahead into the future and that only made it worse! I kept imagining, will I be here next year? What WILL I be next year???

First you have to take everything one step at a time. Amy your doctor gave you good advice. Even though you have this invader in your body and they are going to do what they have to to get rid of it- it never touched your spirit or your strength. In fact, you find strength that you never knew you had before. Those may sound like pretty words now- but really! You are such a strong person after this- it amazes me sometimes what a sap I was before BC.

Chemo sucks. I am not going to paint a pretty picture and say it is a breeze. And I was so scared I almost left before the first infusion. I sat in that waiting room thinking I was going to the electric chair. The receptionist had to come and sit next to me and keep me there! She had been watching me and knew I was going to bolt!
She kept telling me she has never seen anything bad happen and that people come for treatment and leave perfectly fine. I looked at her and told her she was lying!

But she wasn't. I was sure that as soon as they hooked me up I would either drop dead or projectile vomit across the room. Well- nothing happened. NOTHING.

Let me take you through what you will have happen....
You go in and the onc examines you and then you are led to the chemo room. Mine was full of Barco Loungers. There were people hooked up to IVs reading, sleeping, watching TV and one guy was eating an egg sandwich..we had the same appointment time so everytime he ate that egg sandwich- I can't smell them and not think of him.

Sometimes you talk to the other patients while the nurses are mixing your cocktail in the back. It usually goes like this: "What are you in for?" "Breast. You?", "Lung- what about you?", "ovarian".... it sounds like what it must be like your first day in jail- What are you in for? Grand theft auto- murder- bank robber.... you actually start to talk about your cancer as if it is something everybody has- and that is when you start to feel you can control this thing. When you see the other patients all doing what you are doing and making it through- you get your strength and courage.

So the nurse is done and she comes and hooks you up either to your port or IV and gives you a bunch of stuff before the chemo part. TIP: If she asks if you would like ativan the answer is YES.
She attaches a small bag of steroids and that goes through- the steroids serve as an anti-inflammatory for your entire digestive tract... they help keep nausea away. You will be given some in pill form to take home. Then she will give you one of the anti-emetics (stop-vomit), and then the Ativan and sometimes even some Benadryl because some people get a hayfever like sensation from the cytoxan. Now you said you are getting Adriamycin... ok - that is RED. Don't be surprised when she comes at you with that. Some people call it The Red Cure, The Red Devil, Hi-test Hawaiin Punch oncologist just say it WORKS. That is an injection into your iv line. She does it slowly and then after she flushes your line with saline. After that a huge bag of saline is attached and it has the cytoxan in it. It should be at a very slooooooooow driiiiiip- if the drip is too fast you can get a headache... TIP: Tell the nurse you want it slow so she knows you are on top of things and ask her for two extra strength tylenol before she gives it to you.

After that bag is done so are you! You make your appointments for next time and go home.

Here are some tips-
Get every rx filled ASAP- if they can call it in from the chemo room to your pharmacy even better- bring your pharmacy phone number with you.

TAKE YOUR MEDICINE WHETHER YOU NEED IT OR NOT... If you remember one thing remember this- you can prevent getting sick but it is very hard to STOP it. If you are feeling fine and think- Gee! I don't need to take that I feel great! You will pay for it later. TAKE IT. In fact, set up a schedule so you do not miss a dose. Even set an alarm at night and take it as scheduled.

The other thing is to eat before you go. Have breakfast. Have lunch. The absolute worst thing you can do is have an empty stomach. All day graze on things like crackers and soup and hearty breads- for at least the first three days.

AND ABOVE ALL- DRINK WATER!!!

You do not want Adriamycin or Cytoxan hanging out in your kidneys or bladder- bring a 2 liter bottle of water with you and try to drink as much of it- all is best- while you are there. Keep drinking for the next 48 hours. This is so important and it really helps you to feel well.

You may feel nothing when you get home, you may feel queezy or head-achy- or you might feel like you are coming down with something. ALL NORMAL. Take it easy- learn what you can and cannot tolerate. And remember to nibble and drink for those first couple of days.

In ten days your head will feel weird- kind of tingly and then kind of annoying. You will see some hairs on your pillow and in your brush. At day 14 is usually when it starts to come out in earnest. Every woman I know keeps checking her head to see how much she has lost. She can drive herself absolutely crazy.

Take control and do something about it. You will know when the time is right. Just cut it short or shave it. You will feel so much better and instead of waiting and wondering you called the shot and did it yourself. There is a great deal of empowerment in that.

Get your wig before your hair comes out. Have your stylist style it to your exact style. That way when you shave it- you can put "you" back on.

For every side effect there is a pill or a wig or a scarf...the women who went before us made sure we have everything covered now.

Think of chemo as your friend, your army, your security force- becuase it is reaching into your cell's DNA to remove any remaining cancer cell. Because those cells are rapidly dividing it can accidently effect other rapidly dividing cells, like your hair follicles. But here is the beauty of chemo and modern medicine... It kills the cancer dead- forever. But your hair still grows back. When you first lose it just think how many cancer cells died at that same time!

I didn't see Melissa Ethridge but please don't worry about her. Everyone is different. Everyone has different reactions. Can you play the guitar like her? If not, what makes you think you will have the same side effects from chemo as she had???

Did you know that 70% of breast Cancers are CURED with surgery ALONE? Just think of the extra insurance policy you are giving yourselves by following up with chemo and rads.

Now, about me...
I was a bit of a worry wart before cancer. I was a little shy and backed off from fights. I had the classic middle child - make everything ok- syndrome. Now, post cancer, I don't worry so much. I learned how to pick my battles and I also learned that no one lived a day longer because they worried. I don't take any crap from people who used to give me plenty! I think of my scars as not something ugly but as proud marks of a successful battle. My hair is past my shoulders now. I laugh more. I am happier and freer. I made it through in one piece. I had a hard time while going through it but if I ever have to do it again I will in a heartbeat.

Don't mourn the old you. You are still there and you are a warrior right now. You have some major cancer butt to kick. And after the war you will be the victor- and that is a really great feeling.

I promise, you will get your life back- you will be you again...and you will love the changes in yourself.

So Go Get 'Em Girls!

No Surrender!

Dear No Surrender,
Thanks for all the great advice and pep talk--just what I needed!
Jane

Hi MJ-
I think I'm in the same study...NSABP-38? I am in group II. AC and Taxol, dose dense. Started last Friday. 1 down 7 to go. It is a relief just to find out which treatment plan you will be getting. The fewer unknowns the better.

-Ruth

Hi Lynn-
I had redness and puckering on my mastectomy site and it turned out to be chest and axillary lymphedema. It got pretty hot and uncomfortable and they gave me an antibiotic for 10 days and then physical therapy exercises and message. It has worked great and that problem is now all better.
-Ruth

No Surrender,
Thank you so very much! I am going to print this post and keep it with me to read when I start to panic. You can't know how much this has helped.

God Bless you!

Ruth, thanks for the advice - I've already gone through two different antibiotics, but none of the doctors have mentioned lymphedema to me. Did have a skin biopsy to rule out the possibility of IBC which came back clear, so we are just watching it for now. It's not very painful, just annoying and itches a lot from time to time.

Thanks!
Lynn

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Serendipity--Where are you? my thoughts are with you hope you are doing well. Have you found out if you are taking the drug Xeloda during your Chemo? I found out today that I am.

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Hi Sherry,
Actually, today I've felt better than I have since my Oct. 12 surgery. I have a little bit more mobility in my left arm shoulder and a little less pain. I went and got my below shoulder length hair cut to chin length today. That's as far as I'm willing to go so far.

Tomorrow I get the port put in with light sedation (Twilight?) (I'm a big weenie when it comes to pain--even my core biopsy hurt like H E double tooth picks even though I had about 5 shots of a local anesthetic!)

I probably won't find out about the Xeloda trial until Friday when I go for my first Chemo appointment. I'll let you know what I find out.

One day at a time!
Jane

Calico,

Sorry you are having so much lemonade. I am worried about you! I am doing the ovary thing next Monday at University Hosp. and should begin chemo soon after.



Sherrie,

I hope your lung is healed, I guess some of those side effects you have to sign off on might come true, but I wish they wouldn't.



Dana & No Surrender,

Thanks for your advice and encouragement from someone who has been there, done that. It is hard to have parts of my feminity removed and not think that I might not be the same person anymore.

Denver has a large run for the cure race and my son and his children walked/ran in my name Sunday. I watched on TV and cried because of my reluctance to have joined them. There were many women who had many cancer free years since they went through what I am going through now. It is mind boggling to see how many are affected by this cancer all in one place (over 65,000).



Anyone, What is MUGA? I had heart ultrasound and nuclear stress test - is that the same?



Tracy,

Me too. I will only gain 5% but consider that in ten years how much of a difference that is. At age 73 that's over three years.

Hi Ladies,

I'm meeting with my oncologist today to get things going for chemo...I'm so nervous to start that I'm probably going to freak her out by begging her to give me my port and the chemo tomorrow! Realistically, it's going to start in a couple of weeks, I'm sure.

Are there any specific questions I should ask her today regarding starting chemo? My parents and husband will be with me, and they are calmer than me, so that will help...but I wanted to make sure I asked things that maybe people don't think to ask about chemo before it starts? Also, what questions should I ask her about fertility?

Sheesh...I've been so calm and excited to meet my doctor and now that it's today...I'm a nervous wreck!

-AMY

Okay, got my port put in today--under light sedation and I don't remember a thing. But, I'm feeling pretty okay. My right shoulder hurts a bit (the side the port is on) when I move it a certain way, but other than that, not too bad so far.

If I'm still feeling okay tomorrow, I may go wig shopping. My mom is visiting me and I think it would be a good "mother/daughter" thing to do--athough--yesterday, after I got my hair cut, my mom's comment was, "I'm sure it will look better when you do it yourself" (as opposed to how the hairstylist did it) :-O and my husband said, "What did they do to your hair? I think they could have cut it straighter." :-O I told them both, "Hey, it looks better today than it's going to look in a coupe of weeks, so enjoy it now!" and they both kind of got quiet.

On a funny note, my 7 year old daughter saw my haircut and since we had the discussion about my hair falling out soon, she said, "Did part of your hair fall off?" :-D
Jane