Dis Breast Cancer Survivors - GAGWTA!

[Miss Mickey Mania]

Laura - great photos again! Those pink crocs were very chic .

Good news for my mum. She got her 4th dose of chemo yesterday and was examined by the oncologist to check on how it's going. She had expected to be getting 8 doses but the doctor was very pleased with how everything looked and felt (actually said she couldn't even feel the mass any more!!) - so she will only be having 6 chemos! So she'll be done with it in early August! That was a real boost for her, and all of us.

She is even talking about going away for a few days in late July if all dates work out ok.

So with any luck, she'll have some hair back in time for Christmas .

Louise

 

[snappy]

Laura - great photos again! Those pink crocs were very chic .

Good news for my mum. She got her 4th dose of chemo yesterday and was examined by the oncologist to check on how it's going. She had expected to be getting 8 doses but the doctor was very pleased with how everything looked and felt (actually said she couldn't even feel the mass any more!!) - so she will only be having 6 chemos! So she'll be done with it in early August! That was a real boost for her, and all of us.

She is even talking about going away for a few days in late July if all dates work out ok.

So with any luck, she'll have some hair back in time for Christmas .

Louise

Great news about your mom, Louise. Way to GO!

 

[Disney Debbie]

Morning ladies....
can I just say that I'm tired....
I'm so tired....tired of thinking, tired of working on relaxing, tired of not being able to get to sleep and waking up too early, tired of trying to be grateful that my diagnosis and prognosis is very postive, tired of hearing that radiation makes you tired when I haven't even started yet ...tired of being tired. I guess it's time to give in and ask the doctor about a sleeping aid of some sort, but I'm too tired to decide which doctor I am supposed to ask.
Are you tired of me complaining yet??

pheeeeeeeeewwwwwwwwwww....thanks for letting me say that here instead of dumping it to someone at work or with family.....

back to your regularly scheduled day
gotta run to work!!

Just remember - everyone doesn't experience things the same way. Chemo was pretty much a breeze for me - no nausea, only tired for one day (2 days after chemo). Whenever anyone asks me what chemo is like or radiation etc. - I tell them what it was like FOR ME - but that everyone is different. I also went into everything with the attitude that it WOULDN'T make me feel bad - and I think that made a difference.

As for sleeping - have you tried Benadryl? That's what the doc told me to take since I really didn't want to take any more $$$$ pre$cription drugs! And it worked for me.

 

[Disney Debbie]

I had my 3 month checkup yesterday and they want me to go back on Herceptin. I'm not terribly excited about that! I know I should be grateful that it's available and able to give me another edge against recurrence - and I am - but I'm not looking forward to needles and/or ports again. They took my original port out when I had my mastectomies so I'm going to try and just take it with an IV for now. I'm supposed to have it every 3 weeks. When I asked for how long she said, "Until the next best drug comes along - but at least a YEAR!!!" So I might end up with a port after all since they always have a hard time finding my veins! It took 2 tries yesterday just to get the bloodwork samples!

So - I've learned once again - be careful what you wish for!! I'd just been whining about how I wasn't "doing" anything anymore - so now I guess I'll be "doing" something!

Even though I'm not too excited about this, I'm definitely in a much better frame of mind. I went yesterday for the first time to our new Wellness Ctr. and I really feel good about that. She put both Bill and I on a resistence program in the pool. (He's had back problems) We enjoyed it and could really tell we got a work out. Plus we're doing cardio. I felt good about doing something good for myself - and plus met a guy in the pool who worked out with us who lost his lower leg in a work accident in Feb. He was amazing - God always puts people in our paths to make us kick our selves in the rear and get over ourselves - doesn't he??

 

[NHAnn]

Good morning....YES Daisy Debbie, I do think you're right about God putting people in our lives for a reason! And also your comment about attitude going into treatment. I keep telling myself...radiation only makes SOME people tired....I'm NOT going to be one of them. I took a Tylenol PM last night, it has the Benadryl ingedient ....got a good 7 1/2 hours and took my walk this nice sunny morning with DH so feeling good this morning Also, DD(18) spent the night with a friend so I think I was not subconsciously waiting for her to get home and settled to bed, even though she has been considerately very quiet coming home after 10 pm these last few weeks (home from college after freshman year)...that mommy antenna was still doing it's thing most nights I think

DH is off today to accompany me to the oncologist this afternoon (to discuss Tamoxifen, or possible clinical trial of Arimidex). Send me some positive vibes so that I get all the info I need to make the best decision for me!! In the meantime it's off to work I go ...
have a good day....

 

[laurabelle]

Louise- That is awesome news for your mum - whoooo hoooo!!! Sounds like she's kickin' some cancer butt!

Disney Debbie- I'm sorry you're going to have to get back into that old routine...praying it works wonders for you! I needed a port too and also had mine removed during my masts. Everytime I have a blood draw, I really wish I still had it! Your wellness center sounds like it's going to be wonderful for both you and DH. And yes, I love it when you are feeling low and God puts someone in your path to inspire you and renew your hope...I'm glad you saw him!

Ann- You sound terrific! I'm glad your DH is going with you. I'm sure it means alot to him to be there too. I'll be praying for the best treatment option for you to be chosen. I did that before my clinical trial for chemo. There were 4 computer randomized choices, and I prayed that God would have it select the right one for me...and 6yrs later, I'm still here!

 

[Pea-n-Me]

Good morning, guys!

I've been busy with last minute details for our Relay for Life which is tomorrow night. Organizing this team has been a lot of work but it's been fun and I think we're going to have a blast. It's finally all coming together. There are 48 teams and we've raised a ton of money already.

I decided what I'm going to do since I want all you guys with me is that I am going to light a luminary bag with all of your names on it (since I'll be changing shirts frequently for the different theme hours). I'll try to get a picture of it and post it later. I am writing the names in Dis lime green.

I had a great visit with my radiation onclologist yesterday, she's my favorite doctor. She helped me to feel positive and I left there feeling upbeat. One of the things she said was that life is not a dress rehearsal, that it's the real thing and I need to get busy living the rest of my life and not worrying about the future. (I've been worried about doing a major home renovation). She assured me many eyes will be watching me very closely for a long time to come.

I also appreciated the fact that she was very careful to go over issues of the importance of controlling weight and exercising (don't we all need to hear that over and over again so it will sink in ) , and she also told me to be careful of alcohol use since it's daily use has also recently been shown to relate to recurrence apparently. Not a problem for me since I only enjoy an occasional glass of wine. I did ask about coffee since I like my daily fix and (as she was sipping her own) she said no link has been found between coffee and cancer but it can cause fibrocystic changes in the breast. I'll be careful not to overdo the coffee.

I wanted to also let you guys here know what has also kept me busy the last several weeks. I've never mentioned it online before but it is something that's been a big part of my life for the past several years. I posted it on another thread and I'm going to post it here as well to share my good news with you too.

This is a sensitive subject for me also. I'm reluctant to post but am going to in case there's anyone out there for which this might be an option. Many people don't know it is.

We conceived our twins through IVF. All of our embryos were frozen. We used 3 (resulting in the birth of our twins) and had several left over since I became pregnant on our first try. For many years they have been lingering in a fertility clinic's freezer. Over the years I've have vivid dreams about them since our children came from this same batch. We really didn't know what to do with them so they've just sat there.

Three years ago our clinic asked us what we want to do with them. They sent us a form letter giving us three options: destroy, donate to research or donate anonymously. I wasn't happy with any of those options so I launched an internet search and found an adoption agency which has frozen embryo adoption as an option. DH and I agonized over this decision for a year and a half - there was so much to think about. At first I thought I couldn't bear the thought of someone else giving birth to my children but then I realized it's not about me, it's about them, and giving them the chance to be born since they are already created.

We applied to the program (which required a ton of work and will not benefit us financially) and after almost two years we've finally chosen a family who will adopt our embryos. I am excited for them because they are a lovely couple and have been trying for many years to have a child. If a child is born we will always know where "our" child is and be kept abreast of his or her life. I've realized after much reading about other families who've done this that although any child will be related to us it will not really be "our" child, it will be that of the adoptive family's. But everyone will benefit and we will have done what we thought was the best for our embryos in this difficult situation. Not an easy decision but the right one for us.

If anyone cares to know more about this program you can PM me.

 

[snappy]

Pea-n-me,
Have a wonderful time on your relay for life. Thanks a million for including all of us on the luminary. I had two luminaries with my name on them at our relay this year and I was affected by the sight of them more than I dreamed. We will truly be with you in spirit.

So good to hear the positive vibes from your favorite doctor. She sounds like she has a very encouraging outlook for you.

On your embryo donation, I have to tell you I was brought to tears reading your post. What generosity you are expressing both to those future babies and the adoptive family. I do not know anything about this program but I think it sounds unbelievably wonderful. After all you have been through, to be so generous, it is inspiring. You should keep a journal of your feelings and thoughts as you go through this. It is a wonderful story. I would love to hear about it in this thread or another. It might lead other couples in similar circumstances to follow your lead.

Good luck with this and God bless you and your family.

 

[laurabelle]

Linda- What a generous, loving act! I'm really in awe of what you've done!

I passed along what you wrote about your rad/onc visit to my group, the part about daily alcohol use and recurrance. We'd love to see the article with the study findings if you can get it for me, I'd appreciate it.

 

[Cruise04]

Linda that is awesome regarding the luminaries - the funny thing was I just thinking that same thing the other day - how can I get everyone here on a bag. Then I thought I'd put DIS Breast Cancer and Cancer Patients and Survivors (since they read all of the names). I still haven't decided. Ours is Saturday night also and I'm getting excited - it just brings a world of smiles to my face of all the people that walk and participate - not only the teams but those of us who participate in the silent auction, the luminary ceremony, and the survivors who walk their lap and the caregivers who walk their lap.

 

[Mom2Ashli]

I have started a list of DIS-Survivors on another thread I started. I plan on putting on the names of the people that let me know that it was okay on a shirt and wearing thier name proudly to the 3-day walk that I am doing in October.

Someone asked me why I was doing the walk. My answer is simple: I am 35 years old and so far Breast Cancer has not affected my life. I have a DD6 and I truly hope that my walking for Breast Cancer Research will make sure that Breast Cancer never affects her life. Since I signed up for this walk I have met so many amazing survivors and heard their stories. I feel it is the least that I can do. Walking 60 miles is NOTHING compared to the things that you Ladies have had to go thru. My heart goes out to each and every one of you that has been affected in anyway by this disease.

 

[kkana]

I'm a survivor and no problem to me if you want to put my name on your shirt.

 

[NHAnn]

Wow...lots of posts today, all have me smiling and a little "verklempt"

Linda, I too am so moved by your post...the empbryo adoption, the luminaries... wow....thanks for sharing...

Thank you's to ALL of you who participate in the Relays, walks, other awareness and fundraising efforts. I have done the American Cancer Society "Making Strides Against BC" walk every fall for the past 6 or 7 years I think....got my letter in the mail the other day with this year's info and pledge sheet and so forth...it was a VERY odd feeling seeing that envelope and opening it this time...and thinking about last year when survivors gathered in a certain place at one part of the pre-walk ceremonies...realizing that I will be among them this year ..yikes.....just a very strange moment...

My appt went well today, I thought...the onc was tall, very cute, and looked about 20 Spent a lot of the time just talking. I'm going next week to talk to the onc nurse who is in charge of the clinical trial "stuff"...I'm leaning towards participating in that as opposed to just getting the presc for Tamoxifen or doing no hormonal therapy....the nice thing is I don't have to decide right away.

 

[JoannaOhio]

I would be honored to have my name on anybody's luminary, t-shirt or whatever, associated with breast cancer awareness. Let me know if you need any information other than that I'm Joanna, I'm from Ohio, and I'm an 11-year survivor.

 

[Tinkertude]

Snappy thanks for the scarf idea, keep 'em coming!
Laurabelle I will ck out the web sites this weekend and will ck out the pin idea.

hi to everyone Hope you are having a zippy a do da day!

 

[snappy]

I'm a survivor and no problem to me if you want to put my name on your shirt.

Welcome to our thread KKana, glad you joined us.

I hope I've thanked you before, Mom2Ashli, but if not, thanks for including all of us on your shirt. Hope you enjoy your 3 day walk. I think I speak for everyone here that we appreciate all the support from the community that are helping with the research effort. This is something that takes a village to make a difference. From what I have read some of the clinical trials and studies that have been done go on for many years and are very expensive to conduct. Thanks for your help.

 

[MerryPoppins]

Linda, you choked me up. What a wonderful thing to do! You'll make those parents very happy and what a great gift for your embryos too. You are so right that you also have to think what is right for them since they have already been created. I've never thought of it that way. Thank you for including me in your walk. I'm honored.

 

[Disney Debbie]

We had our Relay for Life the first weekend of May - Mother's Day weekend. I was the speaker for the opening ceremonies. Although I've been in several local plays and am very outgoing with my friends I've always been terrified of public speaking as "myself" instead of a character. But I got up there and looked out and saw so many people that had loved and supported me the past year (we live in a small town - I was literally on every prayer chain at every church in town) and I wasn't the least bit nervous. Then I walked the first lap - the survivor lap - with my best friend since we were 8 years old - who was diagnosed in December and had her double mast. in January. I've participated in the Relay for the last 5 years - and it was very surreal being a survivor this year. I remember the first year asking why some people got the pretty purple shirts - I said I wanted one like that! So - this year I got one!

So good luck to those of you walking and organizing and just being there. It's an awesome experience for a wonderful cause.

NHAnn - what is the clinical trial for? Glad to hear all went well.

Pea N Me - What a wonderful gift you've given some family.

 

[laurabelle]

Duh, I meant to post this pic with the others (I took 180 pictures last weekend!) Here's my race back sign, I hope you can read it (get out your magnifying glass.) I don't think the Dis will let me post a bigger image of it. The middle section is MY DIS SISTAS including a special turquoise Shugardrawers and red JennyMominRI

Debbie - Isn't it funny how we would never stand up and talk about anything else, but it's so different with cancer?!? I've been interviewed several times in print and on t.v. and even though it's still a bit unnerving, the desire to speak out about the cause is greater!

Ann - Wow, how ironic that you got that mail now! Nobody really wants to be the one wearing the special shirts, but I have to say, there is nothing like being a survivor at one of these events. Be prepared to be blown away! And please don't discount hormonal therapy altogether...I have friends who are stage IV fighting mets and are exclusively on hormonal therapy, not chemo, to fight their bc. It's that powerful against the beast!

 

[snappy]

Thanks for posting the picture Laurabelle. I had to squint but I saw my screen name. Very neat that you took that picture for us.