2005 ROCK-TOBER CHEMO GIRLS

Anonymous

Terynsmom,



Does your camera have a timer? I always use the timer for family pictures. For close ups you can take a picture of yourself using the method that Debbie suggested.

Anonymous

Amy - Terynsmom -
Thanks for the compliment re: my avatar!
Laura

Anonymous

Had my MUGA today, bad news, it has dropped from 66% to 51% which is 23% ...... will wait for dr's call to see if I can stay on Herceptin. I cannot believe that it went so low when the doctors have said I look so healthy! My mom and I just cry when I go to the doctors every time, it always seems like I cannot get a break.

ravdeb

Sorry to hear that Terynsmom. I hope that you can stay on your treatment...really do.
Let us know what the doctor says. I remember when they took me off AC and how totally upset I was, and then they changed me from dd Taxol to weekly. I was hospitalized at the time and I had two oncologists come to me plus my oncology nurse, to ease my fears of not getting the right treatment. One thing they told me is that if it's not good for my body, then the risk is so much higher. They were trying to prevent problems, not put my life in more danger.

I keep reminding myself of that now that I'm finished with chemo. Just that I have no more alternatives as I'm triple neg.

And on to hair...thanks Amy for the support about not caring what others think. For the most part, people have been very supportive...one friend said I look "adorable" and though I don't FEEL adorable...she has been passing that on to all our mutual friends and they are e-mailing me with this! Kinda nice...BUT...my hair is so wierd that soon I will look like a white-haired BOZO! It's curly and getting longer as I write on the sides and back but the top...refuses to grow!!! My daughter said she loves Bozo...Bozo is cute! Oh man!!!! I may have to actually trim the sides and back so that I'll at least look even and I'm petrified of cutting any hair growth. Any suggestions????
ravdeb

maryannecb

Terynsmom--I think the protocol for more than 10% drop is to take a very short break(?a month) then resume. Hope you get back to normal ASAP. I am sure you will. It is bad enough being Her2 +, you would think we should get a break on keeping healthy enough to maintain our treatment...

Ravdeb I have the opposite problem. Curly hair on top which is twice as long as straight hair on sides. Myhair is light brown and ?more grey than it was. Just go with it. I loved feeling the wind ruffle my fuzz this week!

I have taken all my chemo pics of myself with a timer.

Hair down and fists up!

Anonymous

Terynsmom -

I feel bad about your Muga numbers. You have had to deal with way too much at such a young age! Let us know what the Onc. says. In the meantime, hang in there. (BTW, the photo of you and your daughter is beautiful! And, I love your wig "do" and the color.)

Laura

Anonymous

Ravdeb -

Through it all - you continue to have a great sense of humor!

Laura

TracySeattle

This hair thing is so strange. Mine is growing back on the top (toward the back of my head) and on the back of my head, but nothing yet on the sides of my head or the top/front. Isn't it enough that we have to deal with bc, but then we have to look like clowns or bald men?

This too will pass, I am sure....

At least we have hair now (kind of).

Love you all, have a good weekend!

ravdeb

oh Tracy...I just laughed out loud at what you wrote! and yes, Laura..sense of humor is part of the game here!!!!

Still, I was being brave about going all over the place topless and then today in the truck with my dh, I looked in the mirror and thought...geez... Bozo it is!

You are right maryanne...must go with the flow but tonight I went to a meeting at my synagogue...the annual congregational meeting and since I haven't been there much and the members have only seen me with my wig (except for my close friends who have seen me topless)I put my scarf on to cover that weird new Bozo look I have. My friend said I should take the scarf off but I couldn't do it!!!! Not with that group of people. I had a big position in the congregation and so everybody knows me and well..nope...couldn't do it!!!

And now onto a more serious subject as really the hair is not my main concern...I can cover it up until it decides to come in but my dh said to me today...And what if it never grows on the top??? .............

The serious thing is this...I've had this pain in my right leg for maybe 2 weeks or more. It is not in my joints and frankly, when I actually want to describe where it is...I'm not sure..probably a radiating pain...and it may be starting in my hip but I'm not sure. It IS in my thigh and could be further down sometimes in my lower leg. It doesn't feel like a muscle ache. I only finished Taxol a little more than a week ago but I had muscle aches from that and not bone aches and I can't tell what kind of ache this is. It hurts when I walk, when I sit...it is not a BAD hurt...just hurts.
Now, I had this before I was diagnosed but the onc was concerned and I had an MRI before I started chemo. They saw something and sent me for an X-ray. Saw nothing on the x-ray...oh they said they saw something and the orthopedist in the hospital said it was nothing.
So..why the pain????
What should I do? I'll be in the hospital on Wed. for mapping for my rads. Should I seek out my onc and tell her about this pain that is not going away, not getting worse, not BAD but not good either????

I'm not terribly worried about it. I just don't know when to complain and when to not complain...

Please advise on this complaint
ravdeb

maryannecb

Ravdeb it qulifies for the longer than 2 week rule so I would call your family doc or onc to make appt. When I had my planning I saw the radiation onc. He re-examined me and asked if I was having any problems. You could discuss your pain with him/her and he would likely follow it up for you.

That said, metastatic pain tends to be fairly bad pain, often described as gnawing and worse at night. If the pain radites to your foot it may be a pinched nerve in your low back. Lets go with that, that usually goes away...

Fists up!

Graycie

Ravdeb, This may help you knowing that I had back pain after chemo that lasted almost 3 weeks. I was worried but when I had my bone scan it came out fine. What a relief. I still have no idea what it was, but it went away. Maybe it was a pinched nerve like MaryAnne said but I tend to blame it on the chemo. I had alot of aches and pains from taxol. My Rad Onc said it takes a while for your body to recover after chemo so maybe you are going through some after effects from the chemo.
Graycie

TracySeattle

Ravdeb - you will feel better if you talk to the Onc and get it checked out. I found a lump in my good breast on Thursday. I was like you--not really too worried, but worried. My Rad Onc and her assistant felt it and said that they are sure it is a cyst, but they offered me an ultrasound to make sure and I said YES! I want to know for sure so that I won't worry. I will have the U/S this week sometime. They also said with all of the chemo I have just had, they really didn't see how it could be bc.

I think it is best for us to follow up on these things, find out for sure and not have to worry.... We have better things to get on to now that we are starting to feel better.

I will be thinking good thoughts and saying a prayer for you, I am sure it is nothing.

Anonymous

Dear Bozo, I sure wish I could see you in real life!! Oh, I meant Ravdeb and Tracey!

You two have me stifling giggles in here with my Teryn sleeping on the floor with her pillow and my chemo blankie.

ravdeb

Terynsmom...glad we could entertain you and keep you smiling! All in a day's work, ya know

Thanks for the advice. I do think I will check in with my oncologist. My regular oncologist is going through the rads with me, too. She isn't doing this with all her patients but will be doing it with me since she knows my history so well...like the bout in the hospital. I'm very happy with this and will see about seeing her on Wed when I'm there. Thanks. I'm not THAT worried and pinched nerve sounds like an option. I don't really think it's from the Taxol because I've had this pain before... and it's not bad...just there pretty much all the time now.

Tracy...am sending you positive energy. Hope it's B9. MUST BE!!!!

Keep us posted as to that and which movie you saw on your birthday!!!!
ravdeb

ravdeb

Just thought I'd tell you all that I drove today for the first time since Dec. when I was hospitalized. I hadn't been driving because of fear...a new fear of driving after what I had been through in the hospital and the arthritic pains I had at the time.

But today my youngest needed to get to school and my dh was at a meeting so I did it! My son, who is 17, was so supportive of me and encouraging that I had none of the panic that I had thought I would have. I just drove as though I had never stopped driving.

Wow...that is liberating! I feel so good about this!!!! (oh.. I said to my son as we were making the first turn out of our street that it's just lke riding a bike...only that when I got on my bike after years of not riding it, I fell off! He said he hoped I wouldn't fall off of the car. I didn't!!!)
ravdeb

maryannecb

Good luck with your lump Tracy.

It is good you are driving again Ravdeb.

Terynsmom keep laughing ,it is good for you!

Fists up!

ake

isn't it tiring how we're all good for a bit and then it turns on a dime? it's truly the part of being a breast cancer survivor. ravdeb and tracy...i'm sending you nothing but good thoughts for your tests.


i found out that one of my really good friends in my support group had a recurrence in her supraclavicalar (spelling?) lymphnode. she's 2 years out. we had totally different cancers...she had a lumpectomy, was triple negative, chemo (not dose dense) and rads. i'm terrified that she has to go through this and i know it's selfish to think about myself as well, but i'm so scared now about me. i was feeling like i could put cancer behind me and now my friend had a recurrence. i know she will be okay because she's tough as nails, but it's still so emotionally upsetting. i hate this whole thing. i hate that this is the life after cancer.

Anonymous

Amy -
Sorry to hear about your friend. I hope everything works out for her. I feel the exact same way you do. This whole thing is horrible. I have been fighting a severe bout of Post Traumatic Stress Syndrome. And, I just can't seem to stop worrying about recurrence too. All I can say is hang in there. I hate this too. I look back to last June/July and miss my carefree, worry-free days. I miss my old life, I miss the old Laura. I really hope these feelings will go away eventually, for all of us.

In the meantime - we all have to continue to be strong.
Laura

ravdeb

Amy... sorry about your friend. And frankly, I'm sorry for all of us because our lives have been sent off on a new path and we did NOT choose this path.

Frankly, I'm more angry today than I was when diagnosed. I guess that I've learned so much more about this ugly thing that it makes me so MAD that I have to be so worried all the time.

I'm sure that my leg pain is nothing, but before diagnosis I would have just chalked it up to "old age" and not even thought more about it!

On top of this...I have this stupid dissected carotid artery that was discovered 3 years ago. It should have healed itself 6 months after it was discovered but it didn't. Just got my Duplex results in the mail and it's the same...no change! This thing...if not watched...could cause a stroke (though they told me that if I haven't had one yet..most likely I won't get one...that "most likely" is not a sure thing, of course). So, I have THIS, too. I was sooooooooo hoping they would say..."It's all okay". But alas..I have this to follow up on every 6 months...and this is two different doctors...then there is the oncologist...ugh!

So, Laura..I empathize with you. It is just so unfair!

On the other hand, though I'm totally obsessed with cancer and sometimes think that some of my non-cancer friends think I'm overly obsessed and should turn it off, I do feel that this has given me a new perspective on life and has brought out an inner strength that was hidden for a long time. When I think in this way...then my anger subsides somewhat.

I'm determined to make myself feel better and am leaving for my walk now. I look at myself and think...geez... I've got this funny looking hair and I'm so out of shape and now that I was thrown into menapause it will be that much harder to get back in shape and lose the couple of kilos I'm determined to lose..but...

Makes me mad!!!!

But guess what...I'm going to smile...use those facial muscles...and keep plugging on...

Hope you do the same!!!

ravdeb

debbie444

Ravdeb - my hairdresser said not to cut anything. She said to bear with it and to give her something decent to work with when the time comes! One of the ladies i do rads with came in today with her previously grey/white hair a beautiful warm brown. She had been to the hairdresser and poured her heart out about hating being white. He had done a stunning job - not only did she look better but said she actually felt better!
I have one more rads to go now, then 5 boosts. The end is in sight!!

Take care everyone,
Debbie

TracySeattle

I too am angry about having my life changed by bc. Now having to always worry that it will reoccur, but, we are still here, right? That is a good thing!! I agree with Ravdeb that my life is more enriched since bc, I appreciate people and life more. Also, I would have never met all of you and I do consider all of you friends!

We can get through this and on to our new lives if we stick together and support each other!

Anonymous

Cancer has not been the worst thing that has happened to me. I probably have not learned my lesson, but this is really how I feel. I have had career issues that have plagued me everyday for the past 3 years. I know that most, if not all of you will think it's small stuff, but I've said it before and I'll say it again. I'd rather die than have my career be snatched away from me.

I remember TheresaPW advising me that everything else is small stuff when you are not healthy. She's gone now and I so want to heed her advice, but right now, as I get closer to September, my health and career go hand in hand.

marymelodi

I've never felt anger at having bc, mostly sad and regretful. I had a long talk last night with a friend (male) about the almost certain conclusion that chemo finally pushed me into menopause. I had a endometrial biopsy last week and the gyn told me the biopsy shows not sign of hyperplasia or malignancy and has the appearance of cells that are not being affected by hormones. In other words, no monthly cycles. She thinks chemo just shut down any activity of the ovaries and that it probably will not begin again, given my age (53). My good friend asked, "How does that make you feel?" It's mixed. I know you'll all understand. There's a certain amount of fuss & bother that won't occur, but the loss of estrogen and the other hormones brings other "yet-to-be-understood" experiences. Mostly, I see this as one of my developmental milestones. I don't think I can have any claim on youth - probably haven't been able to do that for a long time - but now it is certain. The beginning of menstrual cycles 40 years ago marked me a woman, now am I less a woman? I think not, but it is something to contemplate. What makes us women? Not just having periods. Having breast cancer? Not that either. I am pondering it all. Trying to understand my feelings and reactions. I do agree, after this winter's arduous journey I also feel enriched and somewhat wiser than I was before. Wisdom that has a high price, but worth having.

debbie444

I am probably going to have to have ovaries removed and that will push me through the meno at 34. To be honest if they said they had a good reason to take my leg i'd say fine - which one do you want?? Bc may have bitten lumps out of me but its not having me!!
Debbie

RoseMarie

Having a sick baby was worse than being sick myself. There's nothing worse than holding your baby and feeling absoutely helpless. I think that experience prepared me for this in a way. Besides the obvious differences, I remember feeling so alone when we were told my daughter's prognosis even with my husband right by my side. BC has brought us so much closer than ever before. It took a while to stop waiting for the other shoe to drop with my daughter's disorder and I hope it will be the same with BC....in the mean time I plan on continuing to fight like crazy to beat this!!!!!
Lots of love to all of you today!!!

ravdeb

hey Debbie...
I think you are right..nothing to cut now... the only thing would be to shave it again and I won't be doing that!
So..I just need to wait it out until the hair decides to grow more. keep looking at the top that is so slow to grow and I do believe that it may have grown overnight!!!

I will know in June if color is necessary. Most likely it will be but I was thinking that not coloring is so much easier! I was coloring my hair until chemo for about 15 or more years and perhaps it's time to stop??? Don't know... will wait it out...
ravdeb

maryannecb

Amy , I am sorry about your friend. Five years ago I watched my best friend die of breast cancer(at age 35, 6 years fighting). I felt so bad for her and her children. I still can't believe I have breast cancer, she would be so mad...

Ravdeb, try grey, you just might get used to it and think of the free time you will have.

Rosemarie I honestly think this is worse than when my child was born with multiple medical problems. Why? Well if I do not survive this , what will happen to him? He really needs me, he will have a really hard time understanding it all. So I guess I just have to survive...

Brenda I do not know your career issues, maybe it is time to look for a new job. Is that possible? It is a good time to re-evaluate your life. If your job is not rewarding or difficult , think about changing it.

Terynsmom, did they decide about your Herceptin yet? Hopefully with a short break your numbers will improve and you can start again. Were you getting it every 3 weeks over 90 min?

Tomorrow is my last chemo-today the onc asked me, jokingly ,if I would like another 4 months? I nearly clobbered him.In the beginning it seemed like this day would never come, now here I am at the end. Well I do have rads left but most do so well I hardly count that.Oh yeah and Herceptin until Jan07.

Laura I do hope the day comes when bad thouights about this forget to enter my head. My husband is getting tired of me saying I might not be here...hey I am getting tired of thinking it. I used to be so sure of living a long healthy life.

Well I am off to take my 20 mg of Decadron...

Fists up!

ravdeb

Hey Maryanne...You are DONE with chemo!!!! yahooooooo!!!!!

My husband will not allow me to even mention the possibility of me not being here as long as I had thought. He gets angry actually. So, if it slips out in one of my fits of anger over all of this, I then add that we don't know about any of our lives...could get hit by a truck and die, too...

And I just discovered the advantage of this new look I have. Ya know, the snowy covered mountain look I now sport. Today is election day here in Israel and since we live in a small village, it's quite an event here...like a party in the street. So everybody is out but guess what...nobody recognized me! I can now go incognito!

ravdeb

ake

mary-anne...congrats on finishing chemo! this is the best milestone of this whole crappy experience you should be soooo proud of yourself!!!

Anonymous

Mary-Anne,

Congratulations on finishing chemo!

As for my career problem: If I quit now then the other side would win. I want to be able to say I did everything I could to fight the injustice.

Thanks for thinking of me!