SEPTEMBER 2008 rads group

redheadace1

Jeano--So sorry you're not feeling well. I had a cold when I started rads, and it's definitely an energy sapper.

 

Susan--I was scared about rads, too. Thought I would really burn, as I am a redhead. But my skin never broke. It just got really red and my nipple was sore. I guess skin tone isn't really a predictor of how we do.

 

Nancy258--Hope your boosts go well. I found them to be a little tougher, painwise, but then again maybe that's just because of the cumulative effects of the rads.

 

Sharon--I feel for you, missing your family and all. I don't know if I would have been able to handle it without my family and friends. You're doing an amazing job!

 

Princess--I'm so excited for you! Tuesday! Can you believe it? You know, all the techs and my friends kept saying how fast my treatments went. Not for me! It seemed like forever.

 

Roberta--I was using aloe leaf that I kept in the fridge. It was very soothing. I never tried putting my regular cream in the fridge. 

 

Kristy--Hurray! Congrats on being 2/3 through!

 

Midsumm--Enjoy your time at the spa. That sounds dreamy. And you are my personal hero for doing such physical feats during rads. I was pretty much a lump (still am).

 

Rose--Congratulations! I know what you mean about the happy/sad thing. I feel a little melancholy today, after the high of finishing yesterday. I'm worried about the choices that still lie ahead--like the Tamox and possible hysterectomy. But I'm trying to just enjoy being done. Slept in today; that was nice. Keep us posted on how you are, ok?

 

Holly--Woohoo! So glad you're done!

 

Dancemom--Have fun at the wedding!

 

Kathi--Great picture! Our boobs will light the way to a better world!

 

PattyK--Hope you feel better over the weekend. Have you tried Ibuprofen for the pain? That helped me a little on my bad days.

 

Janloy--Don't feel guilty. I see from your picture that you have your hands full. I didn't have chemo, and I don't have kids, and rads were still really hard for me. And as for driving 40 minutes--if I'd had to do that every day, I'd be completely exhausted. I spent the whole time thanking God that I'm only 15 minutes away from the cancer center. Be good to yourself (I command thee! :>).

 

Thanks for the congratulatory wishes, everyone. I had a good morning yesterday.  A friend met me outside the cancer center and gave me a present, then helped me carry in the cake I brought to thank the rad team. Then I went to my favorite cafe and met a few more friends. Got some flowers and hugs. I'll do my real celebrating on Sunday.  A friend is having a little party for me. I'm spoiled! One of the best things, though, was that my Mom told me she was proud of me. That meant a lot. I have a history of not handling things real well, of breaking down too easily, but I saw through this ordeal how much stronger I've become over the years. It was nice to have it validated. 

 

I think we're all pretty amazing!

redheadace1

I'm posting this separately because I've been wanting to ask you ladies about this: Are you all going on to do hormonal therapy after rads? I have to make the Tamoxifen decision on Tuesday and I'm still not sure what I want to do. I only had DCIS and got clean margins. The rad onc thinks I need to because I'm only 44 and have a longer time to be at risk. 

I guess a lot of us will be keeping in touch with each other on the hormonal therapy boards. 

Makratz

Redheadace1,

Yes, I will be taking Tamox.  I am 42 and have a longer time to be at risk as well. I think I am going to start the tamox on Moday, one week before I end my boosts.  I will definitely see you on the hormonal therapy boards. 

Good luck!

Makratz

Redheadace1,

Yes, I will be taking Tamox.  I am 42 and have a longer time to be at risk as well. I think I am going to start the tamox on Moday, one week before I end my boosts.  I will definitely see you on the hormonal therapy boards. 

Good luck!

mzmiller99

redheadace1

Woo hoo for you!! 

It's funny that you mentioned the hormonal board...I was wondering where I belonged now that I'm finished with rads, too. I'll see my onco Oct. 29 and since I'm an old fart, I assume he'll put me on an AI, but I'm sure we'll be seeing each other on that board soon.

Congrats!!

Susan

princessS

Redheadace1,

 Looks like we'll be going through the next step together also.  I'm dragging my feet on the decision.  I'm the same, DCIS with clean margins.  It seems like overkill, can't we just watch closely every 6 months with a mammogram instead of dealing w/tamoxifen? I understand we are dealing w/cancer and it'll catch the "escapees" and protect the other breast.   I am 36 years old and told it would definately benefit me.  I don't have an appt yet with my oncologist, my radiation dr. said I could take a 2 week break after rads.  These decisions never seem to end. 

KristyAnn

Hi Everyone,

I am supposed to take hormonal therapy but I have to get my ovaries removed first- hopefully a hysterectomy at the same time but I wont know until Friday when I see the gyn who will do the surgery.

My underarm is really dark brown too but doing OK- the folliculitis is itchy and i keep it slathered in aquaphor, radiaplex or shea butter. The BEST thing I have found for my skin is to sleep topless and let it have air all night- that really has helped this last week as the skin has been worse. Seems like every morning it is so much better- of course the continuing rads keep adding to the problem. I try to sleep with the left arm out or extended so the underarm gets air too but thats my favorite side to sleep on so I dont always manage this part!

Kristy 

Skye64

hi all,

it seems, we are in the same boat again with the hormontherapie. I will have my appointment with my gyn doc at monday talking about the oophorectomy.

My blisters are gone...jippi, but the boosts area is still red and itchy.....and I got some pain now...but I read here at the board that would be normal...does anybody have the same problem with the pain now after the rad???

I am curious, KristyAnn what your doctor will tell you....

NancyD

Skye, I have minor pain...like little jabs...every once in a while. Not constant and not really strong, but definitely there. Maybe five or six and then it's gone.

Skye64

NancyD

Yes I have the jabs, it is not constant. It comes and goes...at first I thought I have cardiac problems, but now I think it is from the rad....

vhqh

Kristy - I started doing the topless arm extended bit also and I think it really helped me also

Congrats to all who have completed or are nearly there!

I finished a little over 2 weeks ago and finally went to the city yesterday to buy a good prosthesis and a couple of bras.  Thought I was pretty well healed up but now I'm not so sure I was as far along as I thought.  After not wearing a bra since mid august, this is going to take some getting used to!

KAK

We should all either start our own tamoxifen thread or pick one to jump on.  I'm starting tamoxifen, too.  Haven't started it yet because I want to let the rads fatigue chill out more before I let myself in for some new potential SE's!!  I'm 54 & have already gone through menopause once, so not really looking forward to maybe going through it again because of tamox SE's.  But, I have osteopenia, so can't take aromatase inhibitors.

Our post-rads recurrence risk can still be pretty significant.  Studies show that tamoxifen cuts it in half.  That's a good enough reason for me to take it. 

roberta37

Congrads to all those who are finished this week. 

vhqh - it took me a few weeks to get use to wearing the prosthetic.  They do have some weight to them.  I was told to gradually build up (I was 5 weeks out of surgery) the amount of time I wore the prosthetic.  I find now with rads as soon as I'm home I take it off as I don't like the weight on my chest.

I'm still just very red but no itchiness yet.  Still getting the bolus every day but he thinks they will skip it the last couple of treatments - only 2 more weeks to go.  I love the hint on putting you hand on your hip.  That it the place that is bothering me the most and it does make a difference.  Also putting the cream in the fridge has made it very soothing when I put it on.

I'll be another on tamoxifen.  I know when it came to chemo there were all kinds of side effects but everyone had a different outcome/reaction.  I imagine the same it with tamoxifen (or whatever else anyone is taking).   

Hope everyone has a great weekend. 

Makratz

KAK, I like your idea of our own Tamoxifen thread.  What do others think?

Have a great Sunday everyone.

KristyAnn

How about a generic Starting Hormonal Therapy thread so we can stay together- I wont be on Tamox.

Kristy

redheadace1

Hi, girls. I think I'm crashing. I know I only just finished, and I should be celebrating, but I woke up this morning so, so sad. I was at a party last night and one of my friends said, "I'm so glad it's all over. I was so scared." But it's NOT all over. Now there's the Tamox and the worrying and the possible surgery on my uterus. And I'm going through this terrible baby-ache. I was sick for years after I graduated from college (undiagnosed narcolepsy and severe depression) and I just never got to a place where I was healthy enough to have kids. And I love them so. I'm very maternal. Now I'm 44, single, and I'm starting to really KNOW it. I'm not going to have them. I probably couldn't handle them even if I did have them, because I'm so exhausted all the time.  I've been working part-time as a nanny with the same little boy since he was 1 year old. His mom is one of my best friends. I used to get down next to her belly and talk to him when she was pregnant. He's 7 now. He's the love of my life. But I'm not his mother. And he's getting older and soon won't need me anymore. 

I'm just so scared. I've had health problems all my life and I never caught up. I never had a real "career," because I was sick for so long after school. I don't know what kind of work I'll be able to do with the narcolepsy. I'm broke. And now every twinge in my radiated breast reminds me that I had cancer. That it could come back.

I don't want to flunk this "test." You know, the trials of adversity. I want to emerge from this experience stronger and more positive and with healthier habits. And sometimes I feel that I have. But not today. I'm worried that I'll keep not exercising enough and that I'll keep eating things that are bad for me and I'll keep living in fear, and the cancer will come back, and it will be my fault.

My friends keep saying how well I've handled this, how strong I've become. They are my lifeline. But they're not in this body, with this brain. And it's so hard to go through all of this without a mate. When I was younger I had several chances to marry, but I wasn't healthy enough emotionally. Since the breast surgery and the possibility of upcoming surgery on my uterus, I'm holding any interested men away. My femininity and sexuality feel so compromised.

I hope this isn't too much. I needed to talk to somebody. If I ever try to talk to my friends about still being scared, I know they will say "You will be ok." Or "You have to think positively." They say that partly because they so want me to be ok. And I don't want to worry or scare them. I thought it might be better to talk to you all, to just get it out in writing. Can anyone else relate to what I'm saying?

I'm worried about the whole Tamox question. To take it or not? I guess I'll have to go off my Wellbutrin (from what I've read). I have pretty severe depression, and Wellbutrin has been like a Godsend.

Oh, brother. I'm sorry for dumping. You all have been so supportive throughout this whole thing. I wish there was a way we could all get together in real life. You're all strong and positive and supportive. I'm proud to know you. 

Thanks for listening.

Ace 

Makratz

Dear Ace,

I'm sure a lot of us feel similiar to you.  I know I do.  Everybody tells me how strong I am, how good I look etc.  I feel horrible inside and I'm afraid of recurrence. I'm terrified of that.  I have 2 young boys that I want to see grow up, get married, and have children of there own.  I'm not sure that will happen.

You are not alone and came to dump in the right spot.  Hang in there and keep on bitching to all of us if it makes you feel better.  I read your post and thought, wow, that's how I feel.  Try to be positive but be realistic too.  You need to deal with your feeling.  Do you see any professionals that you could speak to?  Sometimes it's just good to get it off your chest.  I will pray for you.

mzmiller99

Ace,

Please don't ever apologize for dumping!!  You're at the dumping ground!!  This is where you can say whatever is on your mind, and someone will know exactly how you're feeling, and won't dismiss you with a "Cheer up"!  We all know what an emotional rollercoaster this is, and your plate sounds overloaded with stress! 

First, we're all here for each other, as you know, but second, does your cancer center have a counselor that you could meet with?  You have so many valid concerns that perhaps someone there could give you some guidance on an more intensive basis. 

 I'm not a counselor,(just a mom) but it seems that you have all of the worries of a woman w/ bc, plus the stress of financial problems, sexual self doubts, regrets about past decisions, worries about your future, etc. My goodness, woman, that's a lot to handle!

We all have emotional ups and downs, and anxiety is always lurking close by, but who says you've failed any test?  Just getting this far through life means you ARE strong.  That is your A+ for the course and you don't have to prove yourself to anyone! 

What does your onco say about the Wellbutrin?  Are there other meds that do work with Tamox?  I'm on Wellbutrin, too, and Effexor, and would be OK switching to something else, but not ever going off completely. (The world does not like me when I'm not on something!) 

When is your appointment for the hormonal decision?  Soon, hopefully, so that you can get some answers to your fears.  I'd love to say that we are all strong, but I know I feel cranky, whiny, and cowardly most of the time. 

 And, don't beat on yourself for not feeling like working out like a maniac or for eating "bad" things - for goodness sake, one battle at a time!  If you're a stress eater, well, what can you expect when you're under this much stress?? Maybe just going for a head and heart clearing walk is what you need.  Not an intense workout.  Just some fresh air and solitude.

Hopefully, other women will have some helpful words for you, but please know that your post touched my heart, and I'd do whatever I could to give you comfort and support.  Please feel my arms around you, sweetie.

Susan

NancyD

Ace, if you can't dump here, where can you dump?!

We do understand the let down after active treatment stops. It becomes...Oka-a-ay, now what do I do? Just wait for it to come back? What else can I do to prevent it?

And the search for promising supplements, healthier foods (that suit our tastes and lifestyles), and the "careful watch" begins.

I had my children late in life (35 and 40), and for a while I despaired ever having any. I had one pregnancy in my twenties that didn't go to term, and then many years of waiting for my husband to want to try again. I thought he was just scared I would be in danger, but as it turned out, he wasn't that interested in being a father. When our youngest was four, my husband left us for his preferred life as a single man. He has not been a very involved father since then.

So I've gone through this breast cancer thing pretty much with only the sporadic support of my siblings, but with no ONE person there with me for it all. One sister came with me for my initial biopsy and diagnosis, another was there for my surgery. My daughter was my presrciption runner, making trips to the drugstore for refills and OTC medications when I was too sick to go myself. I drove myself to most of my treatments, and on days when I was kind of low, one brother dropped me off and another one picked me up.

The point I'm making here is that no one of them knows ALL that I've gone through. They've each seen only a portion of it. No one has the whole picture or sees all my concerns. The closest one is my sister who came with me initially, as she is dealing with her own cancer crisis right now. Not breast cancer, but a recurrence of a cancer she had fifteen years ago. She's making difficult treatment decisions, too, but she has a husband at her side to help and support her.

At 57, I should be looking forward to my "empty nest" years (with my daughter in her last year of high school). Instead, I'm worrying about what will happen if I get sick again. Who will be around to take care of me if I can't do it myself anymore? I won't ask my daughter or my son to give up their lives to nurse me, but there's a part of me that wants them to offer to do it in exchange for the years I gave up things for them. But I don't want them to come to resent me.

I'm trying to be "strong" by preparing for any eventuality. It seems to me, the ones who appear the strongest have all their ducks in a row and then can move forward with a minimum of fear.  I hope I can achieve it. I'm just not sure of the way.

NancyD

Ace, if you can't dump here, where can you dump?!

We do understand the let down after active treatment stops. It becomes...Oka-a-ay, now what do I do? Just wait for it to come back? What else can I do to prevent it?

And the search for promising supplements, healthier foods (that suit our tastes and lifestyles), and the "careful watch" begins.

I had my children late in life (35 and 40), and for a while I despaired ever having any. I had one pregnancy in my twenties that didn't go to term, and then many years of waiting for my husband to want to try again. I thought he was just scared I would be in danger, but as it turned out, he wasn't that interested in being a father. When our youngest was four, my husband left us for his preferred life as a single man. He has not been a very involved father since then.

So I've gone through this breast cancer thing pretty much with only the sporadic support of my siblings, but with no ONE person there with me for it all. One sister came with me for my initial biopsy and diagnosis, another was there for my surgery. My daughter was my presrciption runner, making trips to the drugstore for refills and OTC medications when I was too sick to go myself. I drove myself to most of my treatments, and on days when I was kind of low, one brother dropped me off and another one picked me up.

The point I'm making here is that no one of them knows ALL that I've gone through. They've each seen only a portion of it. No one has the whole picture or sees all my concerns. The closest one is my sister who came with me initially, as she is dealing with her own cancer crisis right now. Not breast cancer, but a recurrence of a cancer she had fifteen years ago. She's making difficult treatment decisions, too, but she has a husband at her side to help and support her.

At 57, I should be looking forward to my "empty nest" years (with my daughter in her last year of high school). Instead, I'm worrying about what will happen if I get sick again. Who will be around to take care of me if I can't do it myself anymore? I won't ask my daughter or my son to give up their lives to nurse me, but there's a part of me that wants them to offer to do it in exchange for the years I gave up things for them. But I don't want them to come to resent me.

I'm trying to be "strong" by preparing for any eventuality. It seems to me, the ones who appear the strongest have all their ducks in a row and then can move forward with a minimum of fear.  I hope I can achieve it. I'm just not sure of the way.

NancyD

Ace, if you can't dump here, where can you dump?!

We do understand the let down after active treatment stops. It becomes...Oka-a-ay, now what do I do? Just wait for it to come back? What else can I do to prevent it?

And the search for promising supplements, healthier foods (that suit our tastes and lifestyles), and the "careful watch" begins.

I had my children late in life (35 and 40), and for a while I despaired ever having any. I had one pregnancy in my twenties that didn't go to term, and then many years of waiting for my husband to want to try again. I thought he was just scared I would be in danger, but as it turned out, he wasn't that interested in being a father. When our youngest was four, my husband left us for his preferred life as a single man. He has not been a very involved father since then.

So I've gone through this breast cancer thing pretty much with only the sporadic support of my siblings, but with no ONE person there with me for it all. One sister came with me for my initial biopsy and diagnosis, another was there for my surgery. My daughter was my presrciption runner, making trips to the drugstore for refills and OTC medications when I was too sick to go myself. I drove myself to most of my treatments, and on days when I was kind of low, one brother dropped me off and another one picked me up.

The point I'm making here is that no one of them knows ALL that I've gone through. They've each seen only a portion of it. No one has the whole picture or sees all my concerns. The closest one is my sister who came with me initially, as she is dealing with her own cancer crisis right now. Not breast cancer, but a recurrence of a cancer she had fifteen years ago. She's making difficult treatment decisions, too, but she has a husband at her side to help and support her.

At 57, I should be looking forward to my "empty nest" years (with my daughter in her last year of high school). Instead, I'm worrying about what will happen if I get sick again. Who will be around to take care of me if I can't do it myself anymore? I won't ask my daughter or my son to give up their lives to nurse me, but there's a part of me that wants them to offer to do it in exchange for the years I gave up things for them. But I don't want them to come to resent me.

I'm trying to be "strong" by preparing for any eventuality. It seems to me, the ones who appear the strongest have all their ducks in a row and then can move forward with a minimum of fear.  I hope I can achieve it. I'm just not sure of the way.

NancyD

Sorry, that was just a duplicate post.

mzmiller99

NancyD,

Your life sounds very similar - except I had my kids much earlier in life.  They're all married and living away, and just my 85 yr. old mom still with me.  No one really to hang with or depend upon. 

Great friends that I don't want to "bore" with my fears and complaints, and a really great friend who has a very different type of rare, recurring cancer, that I wouldn't dare to whine to about my garden variety breast cancer!  She's made it into medical journals even, but you'd never know it by the way she reaches out to everyone else around her.

So, I guess this is the only place I feel free to vent.  And, I can't imagine what this experience would be like without all y'all for comfort and advice.

 It's cold and sunny in upstate NY - hope everyone has a gerrat Sunday!

Susan

KristyAnn

Ace,

Go ahead a dump- thats why we are here together to celebrate the good and the ugly. I had a total meltdown at church today- and not because of anything anyone said. I was a little weepy eyed at a lesson and someone put their arm around me and basically LET me cry= without trying to cheer me up, encourage me on. tell me I would be fine and I realized that was the first time in this journey that it has happened- I always seem to be the one telling everyone else I am fine and will be OK and getting them not to cry when sometimes what I really need is to cry and have someone hold my hand WHILE I cry.

Kristy

KristyAnn

Ace,

Go ahead a dump- thats why we are here together to celebrate the good and the ugly. I had a total meltdown at church today- and not because of anything anyone said. I was a little weepy eyed at a lesson and someone put their arm around me and basically LET me cry= without trying to cheer me up, encourage me on. tell me I would be fine and I realized that was the first time in this journey that it has happened- I always seem to be the one telling everyone else I am fine and will be OK and getting them not to cry when sometimes what I really need is to cry and have someone hold my hand WHILE I cry.

Kristy

KAK

Oh, Ace, here's a big cyber-hug:

((((((((((((((((((((((((((Ace)))))))))))))))))))))))))))

It's our honor & privilege to be the dumpees for each other.

First things first, though.  I'm putting on my PT cap now.  See if you can wean off wellbutrin & onto celexa or lexapro or cymbalta, which are SSNRI's & don't decrease one of tamoxifen's metabolites like SSRI's & wellbutrin seem to do.  This is no time to be going without an antidepressant.  And just so you know, they're not actually certain that it matters much that wellbutrin & SSRI's decrease this one metabolite of tamox.  They don't block any of the others & they don't block the level of tamoxifen overall, so it may all be much ado about nothing.  They have not, to my knowledge, done any research yet that demonstrates a difference in the five-year effectiveness of tamoxifen between those who are on SSRI's while taking it & those who are not.

But remember that you have options.  I may have to do the same thing myself.  I've been very happy with zoloft all these years, but if my med onc & I think I should try an SSNRI instead, so be it.  She hasn't recommended that yet, by the way, so we'll see.  Lots of people do even better with the SSNRI's than the other stuff & they are supposed to be helpful with the potential SE's of tamoxifen.  So, it might actually end up being a win-win situation.  Just talk to your doc about how to switch from one anti-depressant to another, because it's not advisable stop some of them abruptly.

And how about we start a thread on the Hormone Topic that says, say, "Finishing Rads/Starting Hormones" or something like that?   Kristy, you're right.  We should keep the whole group intact, no matter what hormone we're starting.  I'll start it if someone else hasn't already.

Ace, I love kids, too, & didn't get to have my own.  I'm 54 now & I would be having grandkids now if I'd had my own children.  But like you, I've "borrowed" lots of other people's kids over the years.  Your girlfriend's son is soooo lucky to have you in his life.  My mom was mentally ill, and I treasure the "other women" in my childhood who gave me their love & a safe place to escape to when my mom was too depressed or crazy to give me what I needed.  My aunts, my teachers, my friends' mothers, a lot of those women were & still are very special to me & made me realize how special it is for a child to have adult friends who are not their parents.  I very much believe in the idea that "it takes a village" to raise a child.

Kathi

mzmiller99

Kathi,

I think starting a new thread for us is a great idea!  I want to keep in touch with the crew in the Sept. rads group.

Susan

KAK

Susan, I just did it.  Check the Hormone Topic group & you'll see it.   Kathi

Anonymous

I hope your blister is better Sharon. This last week I had to cover the blister under my arm with silverdene and woven gauze and placed a cotton wrap all the way around my body. That was the only way I could get it to heal. So this evening the large blister under my node scar has healed quit a bit- but still tender.  I have noticed new blisters this Friday under my breast- so I have been putting the silverdene on those. I have noticed more SE after radiation than during - small blisters, peeling, still those shooting pains, nipple soreness. Only good thing right now is my redness is fading. I've chosen not to do hormone therapy - Al. I already have osteo-arthritis so taking Al scares me! I stopped my estogen patch a couple of months ago, changed my diet dramatically, and will start my daily walking very soon. I'm keeping the faith for no reoccurance!

Congratulations to all those finished!!!  I'm continuing to keep all of you in my thoughts and prayers.

Have a Good Week!

searching4

I've got a prescription already for Arrimidex, but I'm post-menopausal.  I'm more nervous about that than the radiation, mostly due to the bone-loss SE, as my latest bone density scan shows loss in my spine.  At least radiation is local.

Ace:  hope you are feeling a little better.  You can't "flunk".  You're already a hero in my book.