2005 ROCK-TOBER CHEMO GIRLS

Anonymous · June 2006

Amy, love that photo!! Did you read what Paula wrote about the shot she gets to stop her period? You should ask the onc about that!

Good news, ravdeb. Keep the alarm set when you go out.

marymelodi · June 2006

Hello everyone!
Like several others I have written 3 times over the last few days only to lose the post in one way or another. I am extremely frustrated at my own ineptitude. Usually I'm trying to sneak in a bit of time while at work, but today I took my lunch break in a room where I can use a computer station and I specifically planned to write to our October gals.

I have been following all your posts with interest.

Ravedeb: sorry about the break-in. Been there and done that, unfortunately. I do know what it feels like. I am glad for you that there were no confrontations or ugliness.

Debbie: Hope all goes well in you upcoming surgery. I'm praying for you.

Tracy, tda866, and Terynsmom: you gals look great in your photos!

Amy: the vaction sounds wonderful. So sorry you have to worry about the fertility and reproductive issues. If it helps at all I think that the way tamoxifen works is that it binds to the estrogen receptor sites on breast tissue cells. So it keeps estrogen from acting like a fertilizer to our type of estrogen-positive breast cancer. If you monthly cycle is coming back maybe that's good so that you will be spared early menopause. I hope it all works out well for you.

Hi Maryanne, Graycie, and Rosemarie glad to see you are each still actively posting.

A couple of weeks ago I told you all that I had set a goal to hike a hill of some kind on the anniversary of my diagnosis as a symbolic victory and to mark living through this year. To prepare for that hike I have been getting out to exercise more and more walking, taking Jazzercize, and now hiking. The last two weekends I have gone out. Over Memorial Day went with my husband we got lost, he had a melt down, and we hiked harder than we planned. This last Saturday I went out with the local chapter of the Adirondack Mountain Club on a beginner hike. More strenuous than I expected but I did it all maybe slower than everyone else but I did finish all on my own power. That felt good! I have sore calves from the exertion, but I dont mind.

Heres a weird thing. I was talking to a woman who works at the hair salon where I got my hair cut before chemo and she said, Oh, you should get you hair cut now because all that stuff that was in you is coming out in your hair. She must be nuts. I only have a half-inch at best. Why would I cut any of it? Have you heard anything like that. Chemo coming out in your hair??? The things that people believe and will say amazes me sometimes.

Happiness to you all,

Anonymous · June 2006

Hi Girls!
Haven't been here in a few days and boy oh boy has a lot gone on! I don't know where to begin with responses to each of you, but here goes:

ravdeb - Wow! You have joined the ranks of Pooh-Bah! Congrats.

graycie - hope your hair is growing more every day! I would also love to know why the Dr. feels the abs. I think he feels the ankles and legs for a build up of fluid which could be signs of liver problems? I see my Onc. this Friday for my 3 month post-chemo check up - I will ask. Yikes my list for him keeps getting longer - I hope he has set aside a few hours for my appt.! LMAO - You especially can relate!

Tracy - you look F A B and I love your Relay photos - what an experience! Congrats on the Survivor Lap - must have felt great!

Debbie - Have a great time at the Wedding and congrats to your son as he makes his Holy Communion. Hmmmm...new conservatory...is that a green house? Please post photos!

marymelodi - congrats on the hikes and exercising! I N V you're determination.

Amy - so happy you had a great vacation/anniversary! The photos you posted are beautiful. Best wishes to you and your dh with the surrogacy appt. My heart goes out to you and I sincerely hope everything goes well.

maryanne - congrats on the weight loss! I have my fingers and toes crossed for you re: the lung nodule results. I know how scary this is because "multiple nodules on both lungs" showed up on my chest CT in April (perfect timing as I was just about to leave for vacation to MX). My 3 month follow up CT is in July - I am petrified to say the least. Please let us know the results.

terynsmom - I am so sorry about the MUGA results. Hang in there - I hope everything goes well with the next one.

Rosemarie, sherryhaire, paula, daydream, tda - Hi there!

E V E R Y O N E -

If you are composing a long post - the best thing to do is type it as if you were writing an e-mail using whatever e-mail source you have. I have AOL, so I click on "Write Mail", I type my post in (taking my sweet time) as if I was sending an e-mail but instead of sending it, I select/highlight all of it, copy it (control c) and then paste it (control v) in here. You can take your time composing it and not worry about losing it. Hope this makes sense!

Laura

TracyNY · June 2006

I just came from my PS who told me what I already knew, I look hot!! We're both pleased with his work. We were talking nipples and he told me that when he makes them for me, he'll pierce them if I want!! I got such a giggle out of that. I may just take him up on the offer!

marymelodi · June 2006

Hey, Hey -- I finally have a picture of myself. It doesn't show me at my best, but that's how I looked one day a week or so ago at the end of a long day at work.

Laura: your advice about writing message was so right on. I figured out doing that today. I opened a separate window in Word and composed my post, then did as you suggested, copied and pasted here. I kept wanting to go back and see what someone had written and then "accidentally" lost what I had written. Gee - you'd never know I do word processing and other computer work all day long!

I was also told to get a follow-up CT to check out a nodule on the left lung which was seen on my original CT. Both of my oncologists said this is extremely common and it is probably not anything to worry about. I had the CT last week and I'll call my PCP for an appointment to go over the report.

Tracy: good for you marching in the Survivors Rally. I forgot to give you a "high 5" earlier.

I was just looking back at the posts and I think we have about 14 or 15 active writers here:
Amy, Laura, Rosemarie, MaryAnne, Ravedeb, TDA, Sherryhaire, Paula, Daydream, Debbie, Terynsmom, Tracy, Graycie, and me. Have I missed anyone? WOW! That's a great group!
I'm grateful for all of you.

sherryhaire · June 2006

marymelodi-you are so correct we have the greatest group ever, All of you are a big part of my family now and hope it stays that way!!!

Anonymous · June 2006

Hey Girls -

I am almost 2 weeks post last rad. I thought I had "stopped cooking" but this past weekend I again had some burning/pain so maybe the fire isn't out yet and it's still smoldering. Oh well, but I'm still chanting -
NO MO' CHE MO!

Yesterday I went to the Avon Breast Cancer Walk in downtown Chicago and stood in the reception line "high-fiving" and congratulating all the walkers as they crossed the finish line. It was an incredible experience. I was emotionally overwhelmed at the sight of thousands (almost 4,000) of women and men as they finished their journey and their unselfish contribution to our cause. My heart went out to them - especially to many of those who were limping from blisters, muscle aches, sprains, etc. It was grueling for them but they did it! I wasn't able to do the walk because I'm still quite fatigued from rads, but it was truly rewarding to hand them bottled water, show my support and say thank you as tears rolled down my cheeks! I am definitely participating next year! Two of the girls on one of the teams live here in Illinois and have posted here on bc.org. We pre-arranged a meet and it was awesome to congratulate them, hug them and meet them in person. Jaybird (Janis) was one of the girls -she posts quite often. She and I plan on keeping in contact - we live about 15 miles from each other. Almost all of the teams had a name - I thought one in particular was great - it was "THESE BOOBS WERE MADE FOR WALKING!" How funny? And this was so special...several of the men had bright pink shirts on that read - NOT TOO TOUGH TO WEAR PINK! I love it!!!!!!!!

I stayed for the closing ceremony and it was amazing. They spoke of all the research projects that will be getting funding as a result of the walk proceeds. I sobbed thinking that maybe someday, someone will actually find a cure for this wretched disease! The whole day was an incredibly rewarding experience. If my photos turn out - I will post them here.

And I went to the walk TOPLESS! First time ever in public! It felt great and quite a few people smiled at me! So I guess it's time for me to wash all my wigs and donate them to the Wellness Place - a non-profit org. not far from my house that helps under-privileged cancer victims and their families.

Laura

Anonymous · June 2006

marymelodi -
Wow! Nice to finally "see" you! I hope your nodule turns out to be nothing. Keep us posted.
Laura

TracyNY · June 2006

Hey Laura, I don't know why you were concerned about going topless. As a matter of fact, I just realized who you remind me of...Jamie Lee Curtis!!

Your avatar photo looks quite like her and she's a hottie too!

maryannecb · June 2006

Hi "hot" tda-so glad you are still busting with joy over your girls!

My CT showed no change in the nodule so not anything to worry about. I do have "multiple patshy areas of consolidation suggestive of infectious process". I think it is the beginning of radiation pneumonitis-will discuss with rads doc once he gets the report. I have a slight dry cough and am tired so don't think it is affaecting me too much. If I get worse I think the treatment is Prednisone, a relative of our old friend Decadron. So I hope it doesn't get worse.Anyone else have any lung effect from rads?

Hope your nodule doesn't change Marymelodi, it was a relief to see nothing changed with mine.

Docs feel your abdomen to check for mets to liver and ascites, a fluid buildup. Probably checking your legs for clots if you are on Tamoxifen, a coommon adverse effect.

Amy good luck with your fertility issues and wow on your hotel, looks great.

Spent 3 hours doing yard work after work today, I'll need a good soaking hot bath tonight.

Fists up!

Anonymous · June 2006

tda -
Thanks for the compliment! You are so funny! Your post about your visit to the PS cracked me up! The piercing idea is great! Go for it! You said you got such a giggle out of it...did you really mean jiggle? LMAO Maybe he could pierce your belly button at the same time! It's awesome you are having such a great time with your girls - after all you've been through - you soooooo deserve it.
Laura

marymelodi · June 2006

I realized that there was another October gal I didn't name earlier = Brenda (adnerb). No offense. As my husband would say, "chemo brain." Don't think I can get away with that excuse much longer. At this age I'm going to have to use "mental-pause" as my explanation for forgetting.

Have a nice day everyone!

ake · June 2006

tda....you continue to crack me up. i didn't even think about the piercing of nipples. wow, so much fun when you don't have sensation my friend actually wants to get a tattoo of a flower or something instead of regular nipple/aerola tattoos. i think you gotta have fun through this somehow or you go nutty.

laura...congrats on going topless isn't it a great feeling? i'm sure you looked beautiful! yesterday was the first day that my hair started to part on one side (as opposed to looking like a buzz cut) and i loved it. i actually like my short hair right now...what a shocker!

marymelodi....soooo good to see you in your picture good luck with your scan! and use "chemo brain" for an excuse as long as you want

i'm no longer stressed about my period...one of my friends is a 5 year survivor and had her period all through tamoxifen and was stage III like me. i'm not scared anymore...more excited to talk to the fertility specialist and actually see what can be done. one of our good friends has volunteered to be our surrogate. so, i'm hoping in the next couple of years...we'll have children. we so deserve it!

have a good tuesday everyone...6/6/6...ooooo spooky!

love,
amy

TracyNY · June 2006

Quote:

Hi "hot" tda-so glad you are still busting with joy over your girls!

"Busting"? Was that a Freudian slip?! Bwahhh!!

Anonymous · June 2006

Laura, I bet the walk was very emotional for you. It would be for me, as well.

Amy, glad you are feeling better about things.

Where is Brenda, by the way????

Mary Melody, glad you were able to do your walk/climb!! What did hubby get upset about and have a meltdown for? Hope he is better!! I guess they forget they are co-survivors.

Hope everyone has a great day.

Anonymous · June 2006

Laura, I forgot to add: even though it felt strange to be topless, wasn't it refreshing? It feels so good to be without the itchy wig!! I wore my wig to work today and it just ticks me off!

debbie444 · June 2006

Well, that was an interesting pre op appointment - they nearly kept me!
All was going well until the simple blood test ( yes I am still scared of them!) The first time she couldnt get a vein and kept digging until I nearly cried. The second time, I remember saying Oh that didnt hurt then the next thing I remember was coming round lying down surrounded by a medical team!My husband who had had the day off to come with me said it was scary, I fainted, my eyes rolled up into my head and I collapsed sideways, going into spasms. The poor phlebotamist shouted for a dr and I got what resembled a crash team as all of the gyne bloods are done in the antenatal suite!
My husband is dreading me going in next week if I have started being dramatic already. I was fine afterwards - iin fact Roger took me shopping and out for lunch.
Marymelodi - good to see you !
Tda - enjoy jiggling in the sunshine - they were damn well hard earnt!
Laura - let some sun to your head - it makes weeds grow in my garden, it may have the same effect on hair!

I am going for my first haircut today - feels like a rite of passage somehow!

ravdeb · June 2006

marymelodi...how great to see you with your white top (we are white-top twins )

Debbie..that sounds awful. I thought I had trouble with blood tests.....
Enjoy your first haircut. I also felt like it was a rite of passage! Was so nervous. It was a "shaping" not a hair cut really because I went in and said he could NOT take too much off!

tda.. glad you are enjoying yourself!

Amy..what a gorgeous place you stayed in. What a fun trip you had and how cute your dh was about the whole surprise. I probably would have bopped my dh on the head had he done that!

I know, Amy, that you hate that you have this cancer hanging over you. It really sucks. I agree. grrrrrrrrrrr. But you are healthy and that's what really counts. Just remember to live each day as fully as you can..and it seems that you are doing that...and ME telling YOU who just took boards in psychology????

Be well ladies...

sherryhaire · June 2006

Debbie--sp sorry for your experience at appt. My veins have always been really hard to get to. Onc says I can have port removed but am nervous knowing I still have to have blood draws once a month.

ake · June 2006

so, since i hate accepting the fact that i have had cancer, that makes sessions with my therapist a bit tricky. i get really overwhelmed when we start to talk about it even though that's why i'm there. so, yesterday she said that i may consider going on an anti-anxiety medication just so my anxiety can be lowered and we can really start processing this whole experience. she said that until i really accept that cancer has been a part of my life, i cannot move forward. she said the biggest step is lowering my guard, stopping the constant "fight fight fight" mode, which ultimately gets me overwhelmed.

is anyone else taking anything for anxiety? i know that's a personal question, but i wanted to ask.

love,
amy

Paula15089 · June 2006

Amy,
i am taking Lexapro, and have been since diagnosis. It is an anti-depressant rather than anti-anxiety medication, but it has helped me tremendously. It made it a lot easier for me to accept what was happening.
I know there are some anti-depressants out there that can be good for anxiety. Wellbutrin i think is one.. A lot of people would tell you to stay away from those meds.. i say, if it helps you - take it. We have to deal with too much cr*p to worry about the ethics of taking an anti-depressant. I am staying on it until i think i can handle things by myself, whenever that is going to happen.

Why do you think you are having such a hard time with accepting the cancer? Is it because of the impact on your life, your wish to have kids soon? Is it because you think cancer makes you less than a whole person?

I struggled with this a lot myself. Now I feel a bit more at peace.The way i process it in my head is like this: it happened; I dealt with it. Perhaps there was some higher meaning to having it. Makes me more emotionally and spiritually aware. I now know something others don't... that we are mortal. Makes life ever so more precious. That, and a healthy dose of denial is whats getting me through.
If I have to deal with more of this cancer stuff later on, well, thats a whole different story.

There is an excellent book by Susan Anderson, called The Journey from Abandonment to Healing. Its is about surviving through - and recovering from - the five stages that accompany the loss of love. I truly believe being diagnosed with cancer can be compared to this loss. The loss of life as we know it. So we go through all the stages - Shattering, Withdrawal, Internalising, Rage and finally Acceptance. The book talks about how important it is to process each stage.

sorry about this long post, but i hope that helps!

marymelodi · June 2006

Amy: You asked about medications - I've been taking trazadone since diagnosis. It is a antidepressant with a sedating effect. I take it at bedtime so I can sleep. Worry and anxiety were keeping me awake and definitely reducing my quality of life, having little sleep at night. The dose I take is very low, people who are having major depression take 4 times the dose I take. With trazodone I go to sleep and stay asleep almost every night.

I wonder too, if your struggle with cancer is because you are young and just at the start of life. It doesn't seem to me like such a young woman should have to face a life threatening disease. Could similar thoughts or feelings bee affecting you, too? I have accepted that it happened and I don't feel angry (I believe) because I can see that some of my lifestyle factors probably contributed to developing breast cancer. The main emotions I have now are some disappointment in some reactions of people close to me and a strong determination to become a new person out of this experience. That is why I so much want to do my "anniversary hike" in August.

I'm sending you a link to a research article reported at the meetings of the American Society of Clinical Oncologists last week. Yoga was reported to produce improvements in quality of life for women being treated for breast cancer.
http://healthorbit.ca/NewsDetail.asp?opt=1&nltid=010050606

Since I started going to jazzercise and walking / hiking more I have found some relief from stress and anxiety. I think that you do already exercise so perhaps these methods are already familiar to you. Hang in there and keep venting to your sisters here. We understand.

ake · June 2006

Paula,

Thanks for your post!!

I think I'm in the Internalizing phase...I keep a lot inside through this. Honestly, this is beyond superstitous, but it's almost as if...if I accept that I have cancer, that means letting my guard down, and that means I'm more vunerable, which makes me worry I'll get cancer again. I know that those thoughts are not rational, but that's kinda the process. I think the other hard part of cancer is that if I accept it...I have to redefine how I see myself. Like...who am I if I've had cancer? Can I still be me with this in my life? It's also partly having to redefine who I am if I'm someone who has had cancer.

I'll check out that book...it sounds like it's really helped you.

-Amy

marymelodi · June 2006

Terynsmom: My husband had a meltdown on our hike because he is a city boy, born in Manhatten, raised on Long Island. He hates bugs and is out-of-shape like I am. He was convinced we were lost without street signs to guide us. I never felt lost. I always knew my directions, but just took a wrong turn. Anyway, he says he will go out hiking again, if his knees don't hurt too bad. Translation of that is - "don't ask me again too soon." Truthfully, his idea of ideal outdoor life is being in the stands at Shea Stadium watching the NY Mets play baseball.

He's a good husband in some ways so I just have to accept that he is not going to be a "mountain man."

I'll just find other people and friends to go hiking with.

marymelodi · June 2006

Amy:
Do you really have to redefine yourself? You are still the woman you were before. Maybe wiser and certainly more experienced, but have you - in your soul - really changed. Your body was ill for a time but you - your spirit, intelligence, compassion, sense of humor, fun spirit - all those things are still with you. Would your husband say that you are not the woman he married? Just asking. Not criticizing. Hoping to help a little in your processing of the experience of BC.
with admiration,
Mary

TracyNY · June 2006

Perhaps its because I don't have to take arimidex, herceptin or any ongoing medications to continue treatment, but I am soooo over this cancer thing. Perhaps I'm just superficial, I'm always posting about how good I look and feel!

I just won't let this experience take over my life. It was horrible but its over. If it comes back, I'll have to deal with it. Will I make adjustments to do what I can to prevent it from coming back? Certainly, but I will not allow fears and concerns to prevent me from enjoying my life.

I'm not saying this to invalidate anyone's concerns or experience, but cancer invaded our bodies, don't let it invade the mind too!

Ice cream anyone?!

chumfry · June 2006

Amy: I'm on Paxil (at the dose for anxiety, not depression) and I think it has helped me a lot. I *still* have to take an Ativan occasionally to quiet my mind enough to sleep. I think we all have to process this stuff in our own ways. I'm just now realizing I may need to see a therapist to help me through the processing process. (sigh)

marymelodi · June 2006

Calling all October gals!
I'm asking for your thoughts. Next week I am giving a little talk to the members of my church women's group. I want to persuade them to be diligent about mammograms, self-checks, teaching their daughters, healthy living, etc. My fondest wish is that none of these women ever have to endure what we have endured this last year.

So, I'm asking you all for your thought, advice, wisdom, etc. What do you think would be effective? Is there anything you think I should definitely say or any particular way of saying it that you think would be good. Either answer here or send a private message if you want. I would appreciate any thoughts or help.

hope all is well with everyone!

maryannecb · June 2006

ARRRRRRRGGGGGGHHHHHH!!!!!!!!!!!

Just wrote my longest post ever to Marymelodi and Amy and "the form I submitted was no longer valid". Too tired to do it again.

Amy if you need those meds, go ahead. They will calm your thoughts and help restore hope if you feel hopeless.I have not needed anything yet but am open to it if required.

Marmelodi. Good luck with your talk. Try to teach them about all you mentioned. Stress damage control. Early diagnosis, better prognosis,less treatment required. The only "good "lump is in a jar. Too many have been WATCHED to noones benefit.Lumps nee3d to be biopsied before they are called benign. No test or doctor is 100% accurate.

Fists up!

Paula15089 · June 2006

Marymelodi, you make such good points!!
Yes, being young makes this whole thing more depressing. Its like (hopefully) we'll have all those years ahead filled up with worrying about reccurrence/mets. No headache or backpain will ever be just that. No chance to breastfeeds the kids (assuming we will even have any!!)

But redefining yourself? Not as such, i am still me, its my body thats been invaded, but the spirit is intact, perhaps even stronger now. Actually, through this experience I've learnt to separate body and soul... When i was feeling weak, and sick, and bone-tired, I HAD to distance myself from physical feelings. Hope that makes sense!

And best of luck with your talk. I think the most effective things for those women would be to see and hear YOU talk, not just some random TV personality, but an actual survivor. You can also mention how many ladies you met on this website that are supposedly 'too young' to have BC, but got it anyway.

take care all

2005 ROCK-TOBER CHEMO GIRLS

Comments

Categories