Dis Breast Cancer Survivors - GAGWTA!

[Harambe]

I just found this thread today while doing a search on "lymohodema". I never knew there was a bc thread! I hope I'm not intruding!

Anyway - five year survivor here! Just returned from a week at the world, and enjoyed it thoroughly. BUT!!! I used my lyphodema hand to start the trip in the finger scan machine. Bad idea! By midday, in that Florida humidity and heat, my arm swelled, and when we park-hopped, the finger scanner didn't like my swollen hand! I had to have them do it manually (which held up the line, so I was embarassed). I spoke with a CM and he said once you activate your ticket, that's the scan they'll use for the life of the ticket.

So - the moral is - use your non-lymphodema hand the first time you scan!

Good health to all!

 

[MerryPoppins]

Welcome to the thread, Harambe.

Maybe you could consider reading the book together? Would that help? That way she'd have someone to talk to about anything that upset her? Otherwise, I'd talk to the teacher. I wouldn't make her read it either. My DD is 14 and tends to hold things in. When we found out I had cancer in 2001, she didn't want to be in the room when we even discussed it. She wanted to put her head in the sand and pretend everything was fine. Finally, she broke down and cried at a friend's house and that was a disaster. (The dad doesn't believe in crying, so he said DD was imature. Can you imagine?) She was afraid to cry in front of me. It was like that would be admitting that I might die or something. She felt she had to be strong. Maybe that's where your daughter is coming from?

 

[NHAnn]

Harambe....welcome...glad you found us! Please do join in. These ladies on here have been such a support for me...I was diagnosed (DCIS) just after laurabelle and Pea-n-Me started the thread late last spring!
And great tip about the finger scanner for those for whom lymphedema is an issue!

Amy, I know exactly what you mean and I agree. Reading something sad or scary by accident (or on purpose) can change my whole mood for a day or more.

Sigh. Isn't that the truth!


Lessa...I don't know what to say about the book...I like Merry's suggestion of reading it with her perhaps. And definitely talk to the teacher.
I'm still really waiting for the other shoe to drop with my DD who is almost 19! She's really been quiet about "it", very considerate, but seems to want to pretend it's not or wasn't real (which is how I feel sometimes too, now that the "active" treatment phase is over -- until about 3 or 4 pm when the wave of fatigue crashes over me still). In a way I want to "make her" confront her feelings about it...maybe I should make HER read that book LOL I really want to get her to a point where she is receptive about discussing her own risk factors, learning proper self-exam, and general healthy lifestyle choices...and all that.

Praying for snappy and all the DISers and all our fellow Americans affected by Katrina!
And hoping Laurabelle is doing OK

and of course: GAGWTA!!!

 

[Tinkertude]

Lessa, I would not make her read anything she did not feel comfortable with. It would take one heartless teacher that couldn't understand cancer overload.

I have a theory: Cancer makes you mad. I got mad at the Ins. co, who did they think they were. It should be up to the Dr and Patient to decide what treatment will work and they should just PAY for it. My girls got mad at their Dad. They couldn't get mad at me after all, I had cancer. And my DH he just had a short fuse on his coping skills(be it the big and little stuff). He was frustated he couldn't fix it. So your little darling is mad at cancer, so good for her, she picked the right thing.

 

[NHAnn]

GAGWTA ladies!

It occurs to me (though it's hard to keep up with all of our comings and goings on here ) that I haven't seen Disney Debbie , and Shugardrawers post lately? hope all is well....and same for others I knwo I've missed...)

Had a kind of restless night last night, but a peaceful walk this morning, listened to James Taylor Live and wanted to post this "thought of the day":

The secret of life is enjoying the passage of time.
Any fool can do it, there ain't nothing to it.
Nobody knows how we got to the top of the hill.
But since we're on our way down, we might as well enjoy the ride.

The secret of love is in opening up your heart.
It's okay to feel afraid, but don't let that stand in your way.
Cause anyone knows that love is the only road.
And since we're only here for a while, might as well show some style. Give us a smile.

Isn't it a lovely ride? Sliding down, gliding down,
try not to try too hard, it's just a lovely ride.

Now the thing about time is that time isn't really real.
It's just your point of view, how does it feel for you?
Einstein said he could never understand it all.
Planets spinning through space, the smile upon your face, welcome to the human race.

Some kind of lovely ride. I'll be sliding down, I'll be gliding down.
Try not to try too hard, it's just a lovely ride.
Isn't it a lovely ride? Sliding down, gliding down,
try not to try too hard, it's just a lovely ride.
The secret of life is enjoying the passage of time

 

[MerryPoppins]

JT is one of my favorite artists and this is one of the best of his songs, IMO. His lyrics really speak to my soul.

My thoughts are with everyone in the wake of Katrina. And also with those of us from this thread who are missing these past few days.

My knee is much better. A muscle in my leg is still knotted up from walking funny, but I'm on the mend.

GAGWTA!

 

[snappy]

Hard to get computer time here. We have a houseful of people and I guess 5 computers and we are all busy getting and giving info. You can get the latest in from the web sites of the New Orleans tv/radio stations so we are on the computers alot.

We were only without power about 8 hours Monday and an hour or two yesterday. We have underground wiring and are close to LSU, we are lucky. So at least we are physically comfortable. Emotionally we are all a mess. The news gets worse each day. I do not think anyone will be able to live in the New Orleans area for months, maybe years. There are way over 1 million people affected, not ust 500,000 like the TV guys report. It is New Orleans, Metaire, Kenner, Slidell, St Bernard, Gretna, Algiers, Marrero, Harvey, everywhere.

We had onlly a very brief text message from the Slidell folks, just we are ok, we assume it is them since we are talking to all other relatives by phones who have evacuated.

Not able to contact my friend's Lana's husband who stayed with the house in Slidell. They lived close to the lake around lots of inlets. Hopefully, he has been rescued. No cell or land line phone service out of the Slidell area either.

No school here today and today's paper said they are closed indefinitely, only 15 of 90 of the public schools in the parish have power. Our kids Catholic schools follow the same schedule.

Not much food in the Winn Dixie here. I am going to try to make a Wal mart and Sams run today. Hopefully they will have more. My husband's niece whose parents and husband rode out the storm in Slidell is stranded in Jacksonville, Fl with 6 kids. We are trying to get her here to us via roads north of the hard hit places. Figuring out the route is hard. We'll be wall to wall when she arrives.

The situation is sinking here. I am just so thankful that none of us are stranded on the elevated expressway by the Superdome. Those people are suffering with the heat, the mosquitoes. Thank goodness most people heeded the evacuation order before the storm. If there had not been so many near misses in the recent past maybe more people would have left. We had evacuees both last year and earlier this year.

My DH just left for work, tears in his eyes. He was talking about how everything from his childhood is just gone. It is rare for him to show that much emotion. He said he did not get much done at work yesterday, no surprise.

It is amazing that we are here safe and sound, just 70 miles north/west of New Orleans. We were in Metairie for 17 years. Thank goodness we relocated, at least we can provide a place to live for our relatives, not much privacy, but a lot of love and support.

I was just on a short trip with my Mom, sister and her husband last week, to Gulfport/Biloxi. From the pictures I have seen of the area, you can't even recognize Hwy 90. It looks like a war zone, just 3 days after I was there last Friday.

Please continue to keep everyone in your prayers. Short of a true miracle, I think New Orleans will no longer be inhabitable. I don't believe the stuff about rebuilding it, there wasn't money to build the needed levee system in the 40 years since Betsy, I don't see that changing without massive Fed funding. At this point I don't know if it is even worth it. Maybe the people should all just be relocated. Sorry to be such a downer but I just don't see much hope.

 

[Pea-n-Me]

snappy, thanks for updating us. It's unusual for me, but any words I write here really don't seem to do justice to what I'm feeling for you and the people in your area. Watching the news I am shocked and saddened by the devastation to your homeland. I can't imagine what you're going through right now but glad you have a home to be in and family and friends around you. You remain in my prayers.

 

[MerryPoppins]

I'm glad to hear from you Snappy. You guys have been on my mind and in my prayers. I'm so saddened by what I'm seeing on the news. It's horrific. We were planning to visit New Orleans over spring break last spring. I'm sorry now we didn't get to go again before all this happened. I keep thinking about all the beautiful buildings and all those people. It's heartbreaking.

I am, however happy to hear that you and your family are safe. And it's wonderful that you could open your home to family. That love and shelter means the world to them. Stay strong and try to look at the few blessings instead of dwelling on the bad. That is how I dealt with the Oklahoma City bombing. Cheer with each rescue that is made.

 

[laurabelle]

GAGWTA sistas!
I am home from 8 days in the hospital for my colitis. I'll keep this brief because honestly I'm exhausted and can't see straight. I failed high dose steroids and had to go on an immune supressant drug. I have the best GI doc in the world. The others wanted me to stay in the hospital until I got better but he said I could do this at home. The only bad reaction to the infusion was a massive headache yesterday which is gone now. I am wiped out though.
Please pray that this drug works and that I am able to get a remission and not need surgery, that the drug doesn't compromise my immune system to the point that my cancer comes back, or that I get a new cancer, and that I don't get any infections. I am still on high dose steroids which is making me feel a bit crazed, but I have to slowly ramp down.
Thinking of you all and hoping everyone is safe and well. I'll try to catch up later.

 

[Lessa of Pern]

good wishes for a speedy recovery laura.

 

[Pea-n-Me]

laura, glad to hear from you. Hope you're feeling better soon. I will definitely pray for the things you ask.

 

[MerryPoppins]

Laura you are in my prayers. Glad to hear that you are home. Sometimes it's much easier to get well when you are in your own home.

 

[snappy]

Laura, glad you are home. Your DH did post you were in the hospital so we were anxious for news. Hope the new drug works quickly. Lots of hugs coming your way.

We heard that DH's sister and her family who we thought stayed in Slidell did end up evacuating to Tennessee at the last minute. It's all a calamity, at least we are hearing good news about people being spared. Worry about rebuilding later.

Everyone here is assuming this will be a many months scenario. Getting on waiting lists for apartments, will try to get kids into Baton Rouge schools. The school board office must be closed just like the schools, maybe no power, all we get is busy signals when we can get an outside line. I hope they accept dispaced kids readily. Churches here are cooking and serving mass quantities of meals to people driving through town. Lots of very generous folks, God bless them.

 

[ElenitaB]

Laura, glad you're home now and recovering... I was schocked to see how my blood pressure went from HIGH to absolutely normal the day I went home.

Harambe, I would go to Guest Services and ask to speak to a manager. That seemed like a very lackadaisacal, non-understanding answer to your quandry.

Prayers and pixie dust to the Gulf Coasters. This is such a sad disaster... two of my newlywed young cousins have lost everything this time around (growing up I remember my aunt, uncle and cousins losing everything with Betsy and Camille). Luckily, most of our family now lives in Houston. But that doesn't mean that I don't worry about the general community. This is such a disaster.

Snappy, one of my cousins used to live in Abita Springs and had her kids in a parochial school in that area (I think)...any chance it's still open. If you're in Slidell, it might be closer that Baton Rouge. (Sorry if I've read wrong.)

As for me, I didn't have chemo last week because my inicision had opened and I have an abcess that needs daily (and yucky) wound care. So chemo got put off to today. Thank God, it went smoothly and I am now cruising on anti-emetics, Ativan and steroids. But I do have to hit the sack soon.

GAGWTA, sisters! Big hugs!

 

[MerryPoppins]

Snappy are you hearing much about Tulane? I know they evacuated. DS is considering going there to college next year. I keep wondering if that's even going to be possible? Thank goodness he has other schools on his list. But it was one of his first choices.

My knee is better. The chiropractor was happy with my progress. Still a bit swollen but I'm walking better. Cross your fingers that I'm doing well tomorrow night. I really want to go to the high school rivalry game tomorrow night. We always lose, but I want to see my son march and it's a lot of walking.

 

[snappy]

Snappy are you hearing much about Tulane? I know they evacuated. DS is considering going there to college next year. I keep wondering if that's even going to be possible? Thank goodness he has other schools on his list. But it was one of his first choices.

My knee is better. The chiropractor was happy with my progress. Still a bit swollen but I'm walking better. Cross your fingers that I'm doing well tomorrow night. I really want to go to the high school rivalry game tomorrow night. We always lose, but I want to see my son march and it's a lot of walking.

Merry, for info on Tulane google Tulane and look for a site called something emergencyTulane or a sports related site. For general scuttlebutt type info check nola.com.

One of our neighbor's kids, who was my DD's big sister in her freshman year last year was registered for Tulane this fall. They drove up Saturday and were directed back home. Kids who flew in from all over the country (apparently 87% of Tulane's student body are from out of state) were bussed up to Jackson Mississippi. Many have flown back home.

I will know more about Tulane later. My good friend who works for Tulane has evacuated to ou house. She has been unable to contact her boss, pretty sure he left, but communication is unreal.

Hope your knee makes it through the game.

Keep sending your prayers, sisters. My teens are going to start volunteering today. Lots of projects are being set up and they need to be involved.
School out indefinitely still, at least until after labor day, still no power in many schools.

 

[Pea-n-Me]

Yesterday my kids and I made two donation containers and went door to door collecting for the victims of Hurricane Katrina. One is for the American Red Cross and one is for the Humane Society of the United States. We gave people a piece of candy for their donation. It's not much but at least we feel we're doing something. We'll keep them going for a while - DH and I will bring them to work over the next week.

Hearing what's going on in the hospitals really hit home for me (and would be my worst nightmare from a work perspective). Staff are caring for patients in the dark with no power, running water, supplies, linen, etc...and running low on food, medication and other necessities. I would love to go help out. I'm going to see tonight if my hospital's parent company is sending a contingent and what that would involve.

GAGWTA - with extra P&PD for snappy and laurabelle.

 

[Lessa of Pern]

my employer has set up a fund for huricane relief and is encouraging donations, which it will match.

 

[MerryPoppins]

I read the nola.com site. Heartbreaking! This makes me so sad.