Dis Breast Cancer Survivors - GAGWTA!

[snappy]

snappy, thanks for the reply. I had a bout with lymphedema this year so I'm cautious about it. I believe now mine occurred after I flew to Florida (due to change in pressures) so from now on when I fly I will wear a sleeve under a sweater or jacket (I had 8 nodes removed).

The reason for lymphedema is that the flow of fluid is interrupeted where the nodes were removed so it pools in your arm because it can't get back up and out into the system again. Anyone who's had axillary nodes out - and especially those who've had radiation to the area afterward - is at risk. I was amazed it could happen 14 months after my surgery but I guess it can crop up at any time.

We talked about the sleeve too in our meeting yesterday. The group leader said that the sleeves used to be advised more when flying but that now it is thought that unless you travel alot, like weekly, you shouldn't need one.
I remember asking my surgeon about it awhile back and he said it was not necessary. Personally, after being conservative my whole life on these things, I am now firmly in the ounce of prevention camp. I have a friend who is a physical therapist and she recommended the sleeve. I am confused about the differing opinions on this. I don't have one, have not flown since surgery (we have take 3 long driving trips though). I would love to hop on a Southwest flight since they have been running so many specials but I am anxious about it.

I did not have radiation, so I guess that helps even though I had 16 nodes removed. I wear a lighter weight prothesis rather than the one I was fitted for because it is just too darn uncomfortable, especially in our heat down here. I believe the darn things also put you at risk of lymphedema, especially heavier ones, but that is just my opinion.

Oh, another thing we heard yesterday is that excess weight is a risk factor for lymphedema (it seems to be an issue for everything now). We got a handout with diet info, (typical breast cancer prevention diet) and it had a BMI chart included. I need to lose at least 16 pounds to get in the highest column in the normal range for BMI. YIKES!!! I am checking on joining a gym today.

DH is probably going to join a diet study and I may try to join him on the diet plan. (I can't wait to see him all the veggies and fruits I expect to be on the diet). I have been having fun with him, I call it the broccoli and banana diet (both of those make him ill to even get a whiff of, we can't put banana peels in the kitchen garbage can). This is going to be fun,

 

[Pea-n-Me]

LOL, the reason I didn't wear one was because I'd read and heard it wasn't necessary and I'd flown several months previously without a problem. I was pretty surprised to have gotten it at that point but in my heart I know it was flying that caused it. It's probably also not surprising it happened when it did because by that point the scar tissue had probably sealed off the passageways. Oh well, live and learn. Personally I will always wear the sleeve from now on during the flight because I don't want it to happen again. I had to go to PT twice a week for a couple of months for massage and wrappings, it was a pain in the neck. I don't necessarily think everyone should wear them during flight travel, but I know after my own experience it's a must for me now. My cousin has to wear a gauntlet all the time so I guess I'm lucky my case is currently resolved.

ETA: I agree about the weight issue and also think salt is a factor. I believe the salty foods I ate on that trip (thanks MYW dining plan ) played a part together with the change in pressures from the flight. As good a deal as that plan is I don't think we'll do it again either unless I can be disciplined enough to stick to healthy foods only - but that would be pretty difficult.

 

[Disney Debbie]

I had 13 lymph nodes removed - and the OT thinks the others were probably fried during radiation - and I think she's right. The rad onc. told me he was really going to focus on them because of the kind of cancer I had - which STARTS in your lymph system (Inflammatory Breast Cancer for you newcomers)

So I've already been dealing with some lymphedema issues. Luckily I caught it early - but it wasn't because of the doctors!! So whomever said there was a lady who'd never heard of it - that doesn't surprise me at all. The only one of mine who brought it up without me asking about it was the rad. onc. I recommend anyone who's new to this go get the breast bible - Dr. Susan Love's Breast Book!!! I only had to have about 4 therapy sessions and was back to normal. The OT showed my DH how to wrap me and between doing that every once in a while and wearing my sleeve every once in a while I've been able to keep my arm under control. My problem now is the area UNDER my arm and where my breast used to be. I'm waiting for them to fit me back in the schedule for a few appts. before our vacation to get that back under control. My DH is going to come with me to learn how to do the massage - he's been trying to do it but one session watching her do it wasn't enough for him to learn. He also tends to want to push the fluid out like he's flattening a tooth paste tube and he hurts!!

Lessa - I believe cheerleading is worse then ANY sport or activity - it is around here anyway! They start so early with practice, have to raise a ton of money, cheer at all the games and have practices all football season and THEN cheerleading competition season starts! I'm glad Becca wasn't ever interested in it!! It would have killed me!

 

[Disney Debbie]

Oh - and congratulations Ann on the new grand baby!!! I'm not ready for my DD to be a mom yet - but I'm ready to be a grandma!!

 

[NHAnn]

Thanks for all the congrats! I have wonderful photos in my digital camera, but still having trouble getting them onto the computer...it's something to do with the Windows98 operating system and the USB driver....or something My IT-type DIL says the 'puter is not recognizing the camera. I need a new 'puter!!!

I've been on a bit of a roller coaster this week.....starting the "pill(s)", the new grandbaby... Had dinner with 2 of the 3 ladies from my support group last night...the third is feeling sick from her second chemo treatment and wasn't up to it...we missed her. I learned that my 82 yr old father's oldest dearest friend died over the weekend.....they worked together for nearly 50 years and lunched together weekly after their retirement about 10 yrs ago, up until earlierthis year when the friend just couldn't do it anymore. But even then my dad would visit him dauily in the nursing home, after spending the day with my mom in HER nursing home every single day. I have to drive down to Massachusetts Friday and take him to the funeral...the other siblings who are closer "can't" and I do not want him to go alone (he needs the emotional support not to mention his confusion level is up, and the funeral is not in a location familiar to him). I haven't seen my parents since the end of June so I need to make the trip anyway...I just hate the drive. Some other stuff going on with another stepson has DH stressed, my DD is going back to school a week from Sunday.... I'm just feeling a tad overwhelmed....need to get out my headphones and a Disney tape I think Thanks for reading my "venting"

GAGWTA!!

 

[MinnieM3]

Congrats to all you Band Parents! I was one for 9 years! It's a great time for the kids and parents too!

I just finished traveling this summer watching DCI (Drum Corp) shows. I went to Toledo, Orlando, Murfreesboro, TN and just got home the day before yesterday from Foxboro, MA for finals. Those of you whose kids are interested, the DCI finals championship from this past weekend will be broadcast on ESPN2 on Sept 6. www.dci.org

I got to travel this past weekend with my best friend who will be having her lumpectomy on Wednesday. She will then have radiation and chemo. Please keep her and her family in your thoughts and prayers.

You are amazing and magnificent ladies and an inspiration to me. As a matter of fact, you all "inspired" me to get my mammogram done. I got the results today and it was fine. Thank you ALL for your amazing stories.

I continue to keep all of you in my prayers to St. Agatha.

Blessings!!

pinnie

Hope your friend's surgery today went well. Good luck to her on rads and chemo.
It's be neat if some of our kids ended up in the same competitions!!

 

[MinnieM3]

GAGWTA!!!

Just a quickie hello....

We got a call during the wee hours of the morning that grandbaby #6 has arrived! Kadie Ann and mom are doing great and big borther and sister are thrilled too (so far ) I ran up to see them on my lunch hour (extended it a tad) because this evening I'm meeting my support group for dinner, just reconnecting after 6 weeks or so.....1 had just started chemo last time and another started since.......

will have to catch up on posts later.....

Much congratulations and welcome Kadie Ann!! Wonderful news!!

 

[MinnieM3]

I am not a "band parent". I'm the mother of two cheerleaders.

oy, the practices and the fundraisers....

I still have frozen cookie douhg from last fall's fundraiser...

I'm selling cheesecakes! Taking orders!

 

[MerryPoppins]

Vent away, Ann. That's what we're here for. Does sound like a roller coaster week. Drive carefully this weekend.

Doubt my kids will be at any of the same contests. Not many DISers in my neck of the woods.

I need to lose so much weight. I KNOW breast cancer should have lit a fire under me, but I just can't seem to lose. In fact, I think the Tamoxifen has made me gain if anything. It's depressing. I wish I could find something that works. I'm a yo-yo dieter. I take off a few pounds and it comes right back.

 

[MinnieM3]

Laurabelle....Lisa is just amazing. Keeping her in my prayers.

Can't comment on breast pain.... never really had any.

Parent Open House/Orientation tomorrow night! I'd rather have root canal than speak in front of all those parents! Even after 16 years I get so nervous! My face turns beet red and I get all flustered! I'll be glad when it's over. Runs from 6 - 8 pm and 3rd grade teachers "talk" at 7pm.

Prediction: I'm at home at 8:15 with a nice glass of wine!!

 

[MerryPoppins]

I know just how you feel. I also was a teacher. I can be up in front of a bunch of kids and I'm fine, but in front of adults I'm scared spitless. I'll be thinking of you.

 

[Lessa of Pern]

minniem3...I'm a lawyer, I have to speak in court all the time.

I'd rather do that than speak in front of my daughter's class.

 

[Cruise04]

ANN - first of all . Second of all - SOUTHWEST HAS RELEASED THEIR FARES FOR THE REST OF DECEMBER!!!!! DH just called me to let me know.

Hope everyone else has a great day! Tomorrow is gonna be a hard one for me - been harder this year than the last two and I don't know why. I'll get through it, I had my breakdown a week ago and so I should be good. We'll see how I do. (It's my moms death anniversary date - 3 years ago tomorrow).

GAGWTA!
Chris

 

[laurabelle]

GAGWTA!

Tonight is my in-person support group and I got an email from Lisa yesterday that she is going to try to make it there!

Ann

 

[MerryPoppins]

Chris, I'll be thinking of you.

Wow! Hope Lisa gets to come. That would be good for her.

I did some back to school shopping yesterday. Trying to get everything squared away for next Tuesday. It'll be here before we know it.

I have some mending and alterations to work on today. I like needlework, but I hate to sew. I've been putting it off. If you hear a loud "Aaaarrrrrggggg!" later, you'll know it's me struggling.

GAGWTA!

 

[NHAnn]

ANN - first of all . Second of all - SOUTHWEST HAS RELEASED THEIR FARES FOR THE REST OF DECEMBER!!!!! DH just called me to let me know.

Thanks! and a big HUG right back at you!!

I got on their site shortly after 7 am and the cheap ($79 one way) fares for my dates were not available. Don't know if they sold out fast or just weren't put on as available at all. I could only get $133 each way That's as much for 3 of us as it was for SEVEN of us last January and about $250 mroe than I had in mind But I booked it, and am hoping for a sale at soem point which would get me credit towards another trip.....we'll see. I could do better with Song or JetBlue out of Boston, but most of the money saved would be eaten up by higher parking costs not to mention the increased hassle and length of time to get to and from the ariport. Just not goign to worry about it at this point...like I told DH- it's Xmas time, the trip is our gift to each other and DD...one dinner out per month between now and then will cover that if we really wanted to stick to a hard and fast budget.

Laura...it would be so great if Lisa goes to the group tonight! Please do pass on a hug from the GAGWTA girls she sounds liek an amazing woman!

Hope everyone is having a good day...

 

[MinnieM3]

I survived Open House...talked for an HOUR instead of 30 minutes....I just get kinda carried away when nervous! I'm having a bowl of ice cream instead of the wine... yummy! GAGWTA

 

[laurabelle]

Lisa came to our meeting!!! It was so incredible to see her! Lots of laughter and tears...She is such a champ. She said originally they told her she has one month to live...now they won't say. I told her I agree, how does anyone besides God know how long she has??? She is dealing with both sides of the issue, preparing for her death if it's soon, yet living and fighting like she's not going anywhere yet! The crazy thing was, there was a woman there for her first meeting who also has brain mets that was found in June! I really hope she joins my online group, I hope we didn't overwhelm her. I love how God brought them together...
I've organized a day of fasting prayer tomorrow in our group, so I won't be online. Alot of us will be participating, including Lisa's hubby. I'm not afraid to pray big!

GAGWTA!

 

[MerryPoppins]

Please do pass on a hug from the GAGWTA girls she sounds liek an amazing woman!

The GAGWTA girls. . . I like that a lot!

Glad that Lisa got to come. I'll add my prayers to the mix tomorrow. I believe in praying BIG too. And I agree. She's living on God's time. The doctors don't really know. Thank you for giving her so much support. She's a brave soul.

We had a fun evening. Went to DS's end of band camp performance. Just before it began he told me that the girl he's had a crush on is going out with him. He's so happy! He wanted to ask her to the prom last year, but his friend also had a crush on her, so he didn't. Instead he went with a friend and so did she. Now they are finally getting together. So cute. Brings back memories of young love. They went for snowcones together tonight.

GAGWATA! I'm thinking of all of you. Just not getting much computer time. I guess the kids feel summer slipping away, because they are hogging the computers all the time. LOL! Next week I should be around a bit more.

 

[Cruise04]

My again for Lisa and glad she got to come to your meeting!!!!! I will be keeping you all in my prayers today as you do some big praying!!!! I truly believe in the power of prayer and I hope it prevails for you!!!!!

Still keeping everyone in my thoughts and prayers. Sorry I haven't been able to check in much but I'll try to catch up on how everyone is doing next week.

Today is the day mom died, I'm doing okay today. Haven't thought about it much but I found myself doing a very intense breast self-exam in the shower. I don't know why for sure but I'm sure it's because of the anniversary date. Didn't think about it until I was done and then I was like - why did I just do that? And it hit me. The events of three years ago tend to run all over again in my head no matter how hard I try to stop them. And I tend to look back on then and now and compare what my life has been like because of her death. I've become a much more involved person in non-profits and in anything to do with breast cancer. It's funny how once something like this hits us, we get so deeply involved. I'm still really hoping to volunteer for a few walks next year but I need to get through the busyness of the next couple of weeks before I commit. Have seen A LOT of monarch's the last two days - I know they are my mom coming to grace us and let us know today will be fine!

Hope everyone has a good day.
Chris