Dis Breast Cancer Survivors - GAGWTA!

[Disney Debbie]

God, being a band parent is like having a second job! I'm so tired tonight I can't even catch up on all these messages.....

I'm really not back in the swing of the school thing yet..... just don't tell my students!

That's one thing I DON'T MISS!! DD was in marching band for 5 years - the drum major for 3 years. We do a band festival in Oct. as our major fundraiser and Lord have mercy it wore me down!! I'd said I'd still do something after she graduated - but that was one of the good things about cancer! - I was in treatment during the band festival last year!


Welcome Heel MD - Waiting is honestly the worst part to me. Once you know what you're dealing with you can have a plan.

 

[Amy]

Sorry - double post!!

 

[Amy]

I'm not very good at keeping up with this thread - it moves way too fast! But I had to share another resource with you guys - sorry if someone already mentioned it. It's "MAMM" magazine, subtitled "Women, Cancer and Community". I subscribed back when I was first diagnosed in 2002, but I let my subscription lapse after about 2 years. For some reason, they started sending it to me again a few months ago, and the latest issue came in the mail today. The July/Aug. issue has a cover story on "When Your Hair Disappears" (4 or 5 women share their experience when their hair fell out) and a special report on Aromatase Inhibitors vs. Tamoxifen. Here's a link to the MAMM website if you want to check it out: MAMM

God, being a band parent is like having a second job! I'm so tired tonight I can't even catch up on all these messages.....

Oh Minnie, I know what you mean! DS15 is in his 3rd year of marching band. We're in the midst of band camp right now (school starts Aug. 29). I'm financial secretary, keeping track of 95 kids' accounts and parent volunteer activities. DH is props chairman, so he spent the weekend in the garage building the prototype for this year's props - a 7-ft tall pyramid, about 4-ft wide at the base, that's supposed to spin and will be covered in mylar or some other kind of shiny reflector-type stuff. Once the band director and his asst. approve it, we need to build 7 of these things, probably in our garage. I certainly hope we get a lot of volunteers to help!

GAGWTA!!

 

[MerryPoppins]

I'm another band parent. Funny how much we all have in common, isn't it? DS, a senior, is in the middle of band camp right now. Our school begins next Tuesday. DD is only a freshman, so she won't be in marching band until next year.

I'm off to check out MAMM. Sounds interesting.

 

[Pinnie]

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

 

[MerryPoppins]

Pinnie, if you don't mind, what is your friend's first name? I'd love to add her to my prayer list by name. And yay for you going to get a mammogram! I'm sure that getting my baseline saved my life, so I'm a big believer.

 

[NHAnn]

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.....

 

[MerryPoppins]

Congratulations Ann! How exciting! Glad Kadie Ann made a safe arrival.

Had the repairman out today. Looks like I'm going to need a new oven. Ouch! Not the news I wanted to hear. My mom has had the same oven since the 60's and it's working just fine. Mine is from the 90's and it's already quit. Sigh. They just don't make them like they used to. (Don't I sound like an old lady?)

GAGWTA!

 

[Miss Mickey Mania]

Checking in very quickly to say hi. Congratulations Ann on the birth of Kadie Ann!

I started back at work (teaching) today. No kids, just staff today and tomorrow. Boy oh boy, am I tired! 6 weeks of total laziness is not good Still lots to do in my new room and have no work ready for Thursday yet!

My mum went for her last chemo (#6) today. She had been sent home AGAIN without it last week and guess what? The same thing happened today! 4 weeks since her last one and 10 days of neopogen injections and nothing. So the docs had a discussion and decided that she'd done so well on the course of 5 chemo sessions that they were going to call it quits and skip this final one. So she doesn't have to return after all . That's this phase of treatment done!!!!! She was pretty happy today when I got home.

She started the "pill" today - letrozole. No tamoxifen as it can affect blood clotting and they didn't want that before her surgery.

She now has a few weeks break before surgery. Things are going as well as they can under the circumstances. Yesterday we even booked a 3 week holiday in FL next July! We are renting a villa and here's the link with lots of pictures. It's gorgeous! http://www.disneyhaven.com/

GAGWTA!!!!!

Louise

 

[Lessa of Pern]

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...

 

[Tinkertude]

God Bless the Band Parents! My dd Star thanked me just the other day for working the stands selling popcorn so I could see her march instead of working in the concession stand. Sooooo for you Mom's of teenagers there is hope. I was a band parent 17 years ago. I guess they do appreciate your efforts even if it is not at the time.
I went to Drums of Summer just a few weeks ago. Once a band groupie always one

Welcome to HeelMD glad you found us. I went on DCL Wonder(ful) last Sept. between hurricanes so that is when I found Dis

Oh Ann, a grandbaby with sweet kisses Hope you post pic soon

GAGWTA

 

[laurabelle]

Look at her fight!!! Please continue to pray!!!

Hello sistas!

I'm home after being discharged yesterday morning. I'm continuing my
chest wall radiation and started brain radiation today. Apparently
breast cancer brain mets respond very well to radiation, according to
the rad. onc. Thanks to all of you for your constant prayers and
messages and the gorgeous flowers. I'm very hopeful that I will beat
this beast. Love you all!

-Lisa P-

www.lisawillsurvive.com

Here's her own update from her website:


I'm back! [Aug. 16th, 2005|08:54 pm]


Hello friends!

I'm back after a few days in the hospital. I got released yesterday morning. It's a very strange feeling waking up and not remembering a few days. I have no memories of anything before Sunday. I received excellent care at Carroll County Hospital. I had a brain CT at the hospital when I was admitted which showed brain metastasis. I am on steroids to reduce brain swelling and dilantin to prevent seizures. I resumed my radiation treatment as an outpatient at St. Agnes yesterday to the chest wall and started brain radiation today as well. They tell me that breast cancer brain mets respond very well to radiation. I also had an MRI of my brain today to get a better picture of the lesions.

Thanks to everyone for the tons of e-mail, cards, prayers, and phone calls. After a few days of feeling pretty down and out, I'm slowly on the way back up. I'm really tired and still feeling a little out of it. Of course, I'm grateful that my seizures happened when they did. Thanks goodness Bill was home and that I wasn't driving or anything. I guess that's about it for now. Please keep the prayers coming my way. I certainly need them!

Luv,
Lisa

 

[laurabelle]

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.....

Welcome to the world Kadie Ann (hmmmm...named after grandmom??? )

 

[NHAnn]

Welcome to the world Kadie Ann (hmmmm...named after grandmom??? )

Yep. they spelled it "right" (without an "e" on the end too) it is DIL's mom's middle name as well

Still sending prayers for Lisa...

My 82 yr old father lost a dear old friend over the weekend...they had worked together (Accounting professors) for nearly 50 (YES 50) years and lunched together weekly since their retirement about 10 years ago....the friend has been in a nursing home the last few months and my father visited daily, on his way home from being with my mom in her nursing home. This is such a blow to my dad....siblings and I are working out who will go to be with him for the wake and the funeral.

GAGWTA!! happy hump day!!

 

[snappy]

Laurabelle, it is wonderful that Lisa is fighting so strongly. Neat also that she is able to send messages. Her attitude is contagious, for her children, husband, friends, family, even all of us here. Please continue to let her kinow we are praying for her, and please continue to update us.

Congrats on the new grandchild, Ann. I gave my MIL's name to DD9, Lorraine.
Her first name came from my brother, her godfather. Makes everything more precious, doesn't it?


Mickey Mania, so glad to hear your mom is done with chemo. I looked at the house y'all are staying at, it looks wonderful. We have stayed in 4 homes since 2002, I like having the extra room when all three of our kids are with us. When it is just DH, DD9 and myself, I like renting DVC points. I'd love to buy DVC, but I also like it when everyone goes with us so to encourage that we have to have a large house.

Merry, is your oven completely gone? We may redo our kitchen soon, my husband works for a developer so we are probably going to order stuff through him. DH brought home a GE catalogue. My oven is ok, but I need a new rangetop, microwave. We just replaced the dishwasher. Trying to decide what to use for countertops, I think they mostly use ceramic tiles, grey grout. My mom has these and likes it. We need to redo the floor tiles too, so at least it would match. And the price will be good, I think.

GAGWTA!!!

 

[MerryPoppins]

The oven works when it decides to. It's gotten to the point that I can't count on it, so yes, for all practical purposes it's gone. Actually, it's been acting up for months and we keep calling out the repairman. He finally said yesterday that it must be the board and he can't get the part for that any longer. It's a GE, so I'm a bit mad at them. It's not an ancient oven. This house was built around '90 I believe. I told DH that since I've been without a dependable oven for so long, we can shop around a bit and look for a good deal. I mean, it's not like I am exactly missing it right now. So it's the crockpot and the stove for me for a few more weeks, I guess.

Good news about Lisa. She is tough. I'm glad she's sounding so positive.

 

[Pea-n-Me]

GAGWTA!

Ann, congratulations on the newest addition to your family!


Laura, thankfully it sounds like Lisa's doing better.


I'm not a band parent yet but I did do colorguard myself growing up (rifle) with a band in the summer. I would still enjoy watching competitions but I haven't seen one in years. A good friend's mother teaches baton and I'm thinking of letting DD give that a try (there go my ceilings ). This woman told me 5 of her students got full college scholarships this year for their baton skills!

How's HeelMD doing today?

snappy, glad to hear you're renovating your kitchen. We are thinking of doing some major renovations in our home too. I've been kind of nervous about it but I talk to my doctors about it each visit (hey, what can I say, that's where my mind is, LOL) and they say as long as our banker thinks it's ok it's fine with them too (that's where the "life isn't a dress rehearsal" comment came from a few weeks back). Has anyone else felt this way and did you go ahead anyway?

 

[Pea-n-Me]

Here's a question for you experts. Do you ever get pain in your breast (s)? If so do you think it's due to hormonal changes, caffeine or something else? What steps do you take - do you schedule an appointment right away or do you give it a few days to see if it settles down?

Two days ago I noticed a pain. I'm wondering if it's from one of the exercise machines where I work out (that you have to lean into). I've been taking motrin so I don't keep thinking about it. I don't feel anything there and I had a mamm and US on that side in February (neg). I am due for routine mamms next month. My original lump was noticed due to a pain but again I don't feel anything there. I probably drink too much coffee so I've been cutting back. I guess I can't email off a picture this time but I'm giving it a few days to settle down and if it doesn't go away I'll call. Please share your experiences.

 

[snappy]

Pea-n-me, I hear what you say about living in the moment. I too worry about going overboard in the financial area, if I am not here to enjoy it, what's the point? The interesting thing about our latest discussions on the kitchen update is that DH brought it up, not me. Everything here in my kitchen is usable and working, it could just use updating. Part of it for us is opportunity, the construction people are working on a big project, so we could have them use their crew to do ours and we would save a bit.

Since I am not in treatment and seem to have my BP under control and my thyroid function sort of under control, it seems like not a horrible time. I do worry about unexpected medical expenses though if something crops up. I know we should stay positive, but I can't help but be affected by discussions at my BC support group session yesterday. One survivor who had not attended before told us of her met. that does seem to be in remission. but she's on her second round of chemo, after so many diagnostic tests, pet scans, the works.

I don't know, maybe I should save the money from the remodeling budget and put it in a rainy day medical fund.

About the pain, I think I would call the doctor. We talked about pain some at the session yesterday, the rule of thumb seemed to be if you have something for 2 weeks you should call the doc. The survivor I referred to above said she identified she had a met problem by realizing a pain in her back was not related to her workout regime. It did not show up on the cat scan until they went very low down her back, then they did more tests. I don't want to be a doomsday type. But our fearless leader who is a social worker at an oncology clinic and a BC survivor herself, stressed yesterday that we have to be our own advocates with the docs. Bring stuff up if you notice changes (like aches and pains), ask about lymphdema, keep up to date about bone loss,etc. They may not bring it up unless you ask.
One survivor said yesterday she did not even know about lymphedema, the doc didn't mention it, the hospital did not give instructions about it. Can you imagine?

After being overly cautious about lymphedema initially, I have been feeling rather invincible lately. I have not been doing exercises, I thought they were mostly needed to regain arm flexibility after lymph node removal. But I found out yesterday you should do some exercise forever, at least raising your hand over your head multiple times each day. Also, I did not know that if you have more than 5-7 nodes removed you were more at risk, I had 16 removed. I knew I was more at risk than if I had the sentinel node removal, but I did not realize 16 was in the higher risk category. I am careful about cuts, burns, insect bites and I never carry anything heavy with my left arm.
But I need to go back to wearing gloves when I work in the yard, I sort of have lapsed. There is a lymphedema support group here and apparently if you go to one of those meetings and see what living with it can mean, you will be scared enough to be more cautious. It must be very difficult for the women who have it really bad.

OK this is too long and too depressing.

On a lighter note, I have to go to the mall and find a purple polo shirt for DD15 to wear to the LSU themed cotillion dance Friday night. Wish me luck, not sure how easy it is to find a bright purple shirt (she wants a generic one not one that says LSU cuz she thinks she will wear it more). And it has to be "cute".

I think I'll go by the Bath and body works store and replenish my supply.

Oh, and one lucky thing, DH's car wouldn't start in Walmart's parking lot Monday night, tried replacing the battery, ended up being the starter.
We ended up finding someone who replaced it right in the lot we did not have to have it towed to the shop. And he was reasonable to boot. YEA!!
I am glad it is fixed, I have been shuttling him around.

GAGWTA!!!

 

[Pea-n-Me]

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.

I've also just completed a whole bunch of CT scans, MRIs, bone scans, etc... so for the moment I'm not too worried as far as that goes. Thank you for reminding me of the two week rule, I'd forgotten that.

I don't know, maybe I should save the money from the remodeling budget and put it in a rainy day medical fund.

Don't you dare!! I will be going ahead with our renovation at some point I'm sure. None of us knows what tomorrow brings, including those who haven't had cancer. We have to enjoy our lives now, and if having a new kitchen makes you happy (and you can afford it, LOL) then you should do it.