Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

That is part of the fear that all of us who've had these types of treatments have to live with long term when our treatment is "over", unfortunately; not just from radiation, but chemo, too. Thankfully, these sequelae are fairly rare.

 

[CherylDan]

Hi ladies, wow this thread has been busy! Thanks for all the nice comments on the pictures

Smilie, hope you had a great birthday! How did the move go? I hope your granddaughters are adjusting to their new home ok.....I'm sure you are missing them. Did your driveway get done?

Laurie, how are things going at work?

Peg, sounds like things are moving right along......great news that the scan was clear! It does sound a little surprising that you will be able to start radiation so soon after surgery - I think I might be a bit concerned about being able to keep both arms up over my head so soon afterwards.....if I'm remembering correctly, that is the position I was in for radiation. But being able to finish up a lot sooner would certainly be worth it.

Dancind, how nice that you will be in San Diego in October. Yep, I'm sure the weather will be just as lovely as ever! Actually when we were there in June the locals refer to it as June gloom because the days start out cloudy and sometime don't clear up until lunchtime.....I was just so very amused by that!

LMP, we have gone to F&W the past two years and enjoyed it very much. My advice would be to go on weekdays if possible, or right at opening on weekends to avoid the crowds. We studied the menus and planned ahead of time where we wanted to stop each day. That way we were able to repeat some favorites and didn't forget anything. Seems like we still managed one sit down a day, and snacked for the other meal. We shared a lot of the time. DH enjoys beer more than wine, and was pleased with the unusual selections he found. Never went to any of the special events, just enjoyed snacking our way around the world showcase.

DH is back to work full time now. It was nice all summer when he only had two classes a week, but playtime is over and school is back in session! He has been at this job for about five years now, and I still have a hard time believing he is home almost all summer - I love it!

Still waiting for word on the condo....good grief.

Hope everyone is doing well. GAGWTA!!

 

[luvmarypoppins]

barbara - just wanted you to know that I am thinking about you and hoping things are going well with you.

robinb - we have stayed at the Swan, but it was a really long time ago, so I dont remember all that much. Just that the beds were great! We did go to the breakfast at the garden grove a few years ago. We walked over from the Beach Club. To me, that was a long walk. But when we got there I met another diser, Tuffcookie and her friend, so that was a total surprise! I am looking forward to staying there again and if it turns out good I will use dh miles for that for our dec. trip if its available. After all these years I am still not used to my dh traveling. How is your dd swimming going? My oldest and youngest became lifeguards so it worked out really well for them.

Peg - seems like the radiation is so fast after the surgery too.

Well dh first plane had a fuel leak so he had to wait for another one, sigh.

I am going to e mail my cousin and try to coordinate something for the 2 days at disney when he is there. If it works out I think it will be a miracle. His grandsons are 4 and 2 I think, so I am thinking something earlier in the day on friday and maybe he can hang with us a while on sat. when his family leaves.

GAGWTA. Have a great week end everyone.

 

[snappy]

Hi everyone!

Peg, do ask about holding your arm above your head as Cheryl said. Although maybe, if you are not having any anxillary nodes removed during the surgery, it wouldn't be as much of an issue. It was a while before I could raise my left arm up very high, even with religiously doing my exercises.

Worth asking about I think.

Good to know from Linda that the heart issues from treatment are fairly rare. The odds are on your side.

MaryAnn, your trip will be wonderful with all you have planned. It sounds like you are the planner in the family like me. Sometimes it feels like conducting an orchestra.

Great comments here about Food and Wine. I have now been several times, maybe 3 or 4 times? Each time I find the experience was different, but definitely enjoyed the first one the most. We did do a special event but it was held by the chef at Commander's Palace in New Orleans that we so love going to.

It would be hard for me to justify booking one when I did not have a clue about the chef/restaurant.

The lines for the booths are LONG during the weekend, no doubt about it. Definitely plan to do the booths Monday-Thursday or early Friday if you can. My sense is that many locals hit Epcot Friday afternoon through Sunday. As Peg says, the plates are small. However, I enjoy this, as it allows for sampling lots of choices. It reminds me very much of the food tents at the Jazz festival in New Orleans, although that venue is on a MUCH bigger scale ( like 200,000 souls each day on the weekend days). We have our favorites we get every year. I do think the plates are larger at the Jazz festival, but you fill up faster, We generally share plates there, that is IF we can agree.

I like reading the reviews of the EPCOT F&W offerings before arriving.

I really enjoy cruising around the countries with the food or a drink and stopping to listen to live music or whatever. It is hard to find a place to sit down with your food on the weekend.

I am so not impressed with most of the WDW restaurants that I would rather try some new stuff than have a sub par expensive meal. DH is different though, he needs to eat regularly. Although right now he is back on the HMR diet and has lost about 15 pounds, he is 7 pounds from what his doctor suggested, and about 20 pounds from the goal I want him to aim for, knowing that there will be a weight gain as he transitions to maintenance.

Had a great visit with my brother, thanks for asking. He is back in NYC, helped our cousin and her daughter move her daughter into an apartment in the upper upper west side near Columbia where she is starting grad school. Tomorrow he and his SO are headed for a vacation in Puerto Rico.

As far as my work, we had a board meeting this week, and basically they rubber stamped the budget plan we cobbled together, with no helpful insight whatsoever as to what we can do to keep things going with the loss of state funding. They are stuck on doing tailgating after LSU games and a 5 K towards the end of the fiscal year, neither of which likely will bring in much $$, in enough time to make a difference.

I am still employed, but at less money, but am still expected to work until my job is finished. The board also wants all the staff to be involved in fundraising "off the clock." Fund raising is not something I have any experience or truthfully any interest in. I will give it one year, and if nothing changes I will hit the road. I just hate to jump ship when the organization itself needs me but I am very discouraged as to where this board is taking things. The rest of the staff is even more dismayed. I imagine we will have turnover, and we only have 11 people on staff in 2 cities!

Ah well.

Thinking of you Barbara.

 

[luvmarypoppins]

Laurie - yes, I am the planner. If Ididnt plan anything, nothing would get accomplished. Ds3 is a super planner, so I will run things with him for the days that he and ds2 are there.

My dh is such a downer saying your cousin wont see you etc. Gheesh. I said its ok if it doesnt work out. He says, you will be upset etc.

I cant read any of the reviews for the F W because we are going n the first day. I did see the menus and it looks like there is just about nothing picky ds3 would like. I see some things and ds2 is into sushi. I call that bait etc.

That is so difficult about your job. I am sure morale is at a low. So do you have to think about fundraisers, more of an organizing role or do you actually have to create and run them?

I know our school has a run. The most they made this year was from a giant garage sale and then the chinese auction I think and a dinner. If I dont go to the events I support them by donating etc. I dont know what our school is going to do fundraising wise this year. I know they need every penny they can get.

Is your organization well known in the community? I am sure sports team etc. could donate items to you??

Well dh has slept off his jet lag, so I think we will grill later. Its actually sunny out.

 

[snappy]

I hope you are able to connect with your cousin at WDW. At least your sons will be there part of the time. Actually I think you have a full slate regardless.

Um, I guess the non-profit I work for is known in the community. The headline of our paper was about our non profit's loss of state funding early in the week after the governor's vetoes.

Unfortunately, rather than striking while the iron was hot, it took a whole month for the person responsible to agree to send out a letter campaign. The letters only went out to the same group of about 400 donors who send checks every year anyway. An email campaign went out too, also delayed.

We have received some donations, mostly from the usual suspects.

However, I think both the person responsible for this outreach and the board missed a golden opportunity to reach out to the large for-profits and private foundations, who have the real funds to donate. We had our 15 minutes of fame. That ship has sailed.

Now it's all about tailgating prior to LSU games this fall and the 5K next May. We had our first 5 K this year, Saturday of mother's day weekend. Can you say hot and bad timing? The board wants to repeat the same timing next year. We had about 60 people sign up for our race this year, almost exclusively staff and board members. It ended up being a rain out so we moved it indoors to the lobby of a casino. No race, just speakers. Wonderful. They think the poor signup for race fees was due to the rain. Really? No one knew it was going to be a rainout until the day before. I don't have a background in holding these events, but even I am savvy enough to figure that out.

So we are going to go with the same weekend in May in 2014. Sounds like a good plan?

I have shared with the person responsible via email the things I have learned from the fund raising walks I have been involved in, including an upcoming one to benefit Alzheimer's Services in October, including the whole team concept. My husband's employer is sponsoring a team, paying the staff's fees and providing a company team shirt too. Payment of the entry fees frees the employee to step up and donate more, and the company will match all contributions. win win.

I am trying to be as positive as I can but it's hard. I admit I am a bit of a cynic, and I spent most of my working life in the for-profit world. Maybe I am just not the right person to work in the non-profit arena.

Enough about all of that.

Anyone else have a problem like this? DD23's phone this month has used upwards of 13 gig. Her usual usage was 2 gig, last month it went to 6 gig, and this month it's crazy at 13 plus gig She downloaded a data usage ap that was recommended and it does not show any data hogs. She and I are both baffled and frustrated as although AT&T are going to waive overage fees, they too are baffled.

My co worker has a similar ongoing problem with her Dh's iphone 5. Once it was a email in his outbox with a huge attachment that was too large to send but it just kept trying to send it over and over. Once it was deleted data usage went back to normal, but only temporarily. They also are on the ATT network. Gotta wonder if there is a problem with the iPhone 5. DD23 had to replace her phone a while back, maybe the new one has an issue that is now surfacing. The next solution is to back everything up and restore the phone. DD23 is going to love that. I imagine she was pretty brutal when speaking with the ATT folks about the problem. I have an idea she will get it solved in the end.

When my brother was in town we saw two movies, The Butler and Steve Jobs, enjoyed both. I had not seen a movie in a theatre in months, then boom. Now, on to Washington DC.

I am hoping for cooler weather, but not counting on it. I saw my GYN doc Friday, whose son and family live in DC. She has been to DC 7 times in the last year (first grandson born) and she said the last time she went it felt like fall there. I could use some fall about now.

I got stung by what I think was a couple of hornets yesterday when watering the yard. DH identified the nest, and he is going to neutralize then tonight. I am a bit concerned in regards to a lymphedema flare up with the one on my left arm where I had all the nodules removed. It is only swollen a little but I decided to take off my rings. My fingers are feeling a little swollen. I am going to watch it closely, and hold my arm up over my head as much as I can. Any other suggestions? I have a compression sleeve but I am not sure if that is a good idea right now.

 

[Pea-n-Me]

If you can get some of the fluid out by holding your arm up, the sleeve might not be a bad idea to keep more from returning. Just keep an eye on the sting area to make sure it doesn't become cellulitic (independent of the sleeve). Did you take ibuprofen at all? That would help with the pain and local swelling. You could try icing it, also.

I have an iPhone5 with AT&T and I've never had a problem with 2G data usage. DS, otoh, with his 4S, almost always comes near or goes over, but it's because he listens to Pandora radio when he's out and about instead of using it just on WiFi. So that's strange as far as 6 and 13G.

 

[snappy]

Thanks for replying, Linda.

So should I go ahead and start using the sleeve now do you think, or hold my arm up for a few days, then use the sleeve?

I took Tylenol yesterday, and used ice at first but discontinued.

I start again.

Should I call the doctor, or wait to see to see any signs of infection?

Thanks for your input.

 

[snappy]

Gosh I am wishing I was wearing my long sleeve gardening gloves. Feeling a bit DUMB here.

 

[snappy]

And I do think listening to radio away from wifi is part of the culprit but again not 13 G worth.

 

[Pea-n-Me]

Thanks for replying, Linda.

So should I go ahead and start using the sleeve now do you think, or hold my arm up for a few days, then use the sleeve?

I took Tylenol yesterday, and used ice at first but discontinued.

I start again.

Should I call the doctor, or wait to see to see any signs of infection?

Thanks for your input.

Tylenol won't help the local swelling, but ibuprofen will, if you can take it, and it also lasts longer than tylenol. Put your arm up for 30 mins (if you can), then put the sleeve on, along with taking the ibuprofen. If there's a way to put ice on it while it's up, that would help, too. You would want to call your doc if it gets angry looking, or pain gets worse. I think the big thing with stings early on is potential for anaphylaxis. i.e a systemic reaction. After that, it becomes more of a local problem. Stings hurt like heck, don't they? But generally they resolve in a day or two. The problem with chronic lymphedema is that the presence of swelling inhibits healing. If you don't have much edema in your arm normally, it shouldn't be a huge problem, ie your natural healing is intact. I have a small amount of swelling normally, but infections in my arm haven't been an issue at all. (I seem to cut myself a lot!)

 

[snappy]

Thanks. Took advil. Ice on, ARm up. Typing with one hand, lol.

I did cry a bit when stung, then had troubling catching my breath, which was scaring nut i think that was from being a big baby and continuing to sob.

i thought of the anaphylaxis thing as it was an issue with DS 25 and seafood when younger. So i focused on calming down yesterday and my breathing became normal.

My lymphedema is more noticeable in my trunk (although less now after weight loss). Wonder now if it even really was lymphedema, pretty sure there is some fluid.

Thks Linda

ice helping with pain too. Interesting. My mom swears by it for her back.

Tricky typing with one hand.

 

[robinb]

I saw the radiologist today. She surprised me a bit. I was told by my oncologist that I would need to wait three weeks after my surgery before starting radiation. The radiologist said it wasn't necessary. Since she won't be radiating the area where I will have surgery, she said she could start right away. In the end, we agreed that I would start one week after my surgery. She was pretty aggressive.

I asked her what affect the radiation would have on my heart. There is very little tissue left on that side. For the most part, it is just skin over ribs. She said there was no way to prevent radiation from reaching my heart, but she would try to limit the exposure. That sort of freaks me out. It would be really irritating to make it through all this and end up with heart issues.

Anyway, the fun continues!

Hope you are all doing well!

Peg, I just went back and read your story from the start of the thread (I'll do that with everyone so I can catch up ). What a scary time for you! The whole idea of radiation freaks me out a little bit and it would definitely freak me out so close to my heart. But ... it sure sounds like you are heading in the right direction and I'm so happy to hear that your last scan was clear.

 

[Pea-n-Me]

Yeah, the concept of radiation is really interesting. They take great pains trying to minimize the impact to other structures and organs by plotting out a unique treatment course for each person. (They radiate not only your breast, but up to your clavicle and down under your arm as breast tissue can be found in these areas and sometimes recurrences are found there.) I spent almost two hours in the CT scanner with them taking precise measurements and making me a body cast so that the radiation beams would be minimal and exact every time. They also mark your body with permanent dots of ink so that beams line up exactly for each treatment (and everyone medically knows later on you had radiation and where). Set up before each treatment took the longest. They'd bring in the body cast, lay me down in it, and get everything set just so, and that could take 5 or 10 minutes, easily. Once the actual treatment got underway, it was just a few minutes long. It does matter whether your BC is on the left or the right. With left, the heart does get more radiation even though they shoot at an angle. With right, a portion of your heart gets it, but more of the lung does, too. I had right, and my lung hurts when I laugh deeply (it's like a stabbing pain that takes my breath away) and I still have a lot of residual pain in the whole area. I worry about changes that could cause cancer in my lung. (As well as a lot of other worries about other aspects of the disease and treatment.) But I consider it a small price to pay for having been here for my kids for the past ten years!

Speaking of which, next month it will be 10 years ago that I found my lump. (Had trouble deciding which smilie to use for that. Thinking back to how I felt at my diagnosis, and wondering if I'd be here in 10 years, I can definitely say I'm happy and grateful about it now, but there were many years I would not have been able to use a goodvibes smiliey, it would more like a worried one. And actually, a worried one still wouldn't be completely out of place. )

 

[Dancind]

10 years is worth smiling about. Definitely. I was so relieved just to hit Year 1.

LMP, Food & Wine is a blast if you go Mon-Thurs. Starts getting really busy on Friday then gets ridiculous. Have some seafood pie in Ireland for me!

Peg, can you put if off a little? Seems like you need a break if it doesn't do any harm.

 

[Feralpeg]

Thanks, everyone for your input. I go in on September 9th for the CT Scan so they can map everything. My surgery is scheduled for the 10th. The radiologist said she wanted to start on the 16th, but that will only happen if I feel up to it. If I am in pain from my surgery or have a problem holding my arms over my head, I will simply tell her that we will need to wait. It would be different if my scans hadn't both been clear. I realize that the radiation is necessary, but I'm not real worried, at this point, that the cancer is present or in an aggressive state.

 

[snappy]

Peg, it sounds like you have a plan. You are right, having the clear scans does allow you a little breathing room to heal.

Linda, thanks for sharing such very specific info about radiation, Linda. I did not have radiation treatment, so I never knew much about the exact way it is planned and done.

Ten year anniversary is great! Congrats! My tenth is coming up next April. These years have passed quickly.

This thread has been a treasure for me during that time. Thanks for keeping it going.

The sting on my arm is not as swollen today. Thanks for the tips. They worked, ice, Advil, using the sleeve. I also took it easy yesterday. No housework! DH found a mother lode of bees in this huge fern. So many bees, it is a miracle I only had a few stings. After he sprayed several cans of strong stinging insect insecticide last night, no activity this morning. I am staying clear from the area though until he announces the coast is clear. The fern is looking a little battle weary today.

 

[luvmarypoppins]

Linda -Happy 10 year cancerversary (taking Annes word), here is some

Peg - its good you are getting things set up, but I know you will listen to your body. Hows Kendalls teaching going?

Laurie - those hornet stings sound so painful! I hope you are resting and recovering and that your dh eradicating efforts have been successful! How about a golf outing fundraiser?

Well ds2 is back to college. Ds3 still has more orientations to do this week and then he is doing some lifeguarding. He looks about to drop I think.

Well I think my cousin is getting confused with my e mails. I dont know why. Just sent him another one. So far we will be in epcot and listening to the first starship concert at the same time. Now he says his son might come. That is good because he is near the 2 ds age and I said they would like to hang out with him. They havent seen him in years. I dont know if he is actually coming or not. Maybe he is just thinking about it. And then that saturday my cousin says he is just hanging out at the pool by his resort. sigh. Cant he tan and drink some other time?? Dh and I are just not into that. He will already have been there for 10 days so maybe he just wants to rest without being with his grandsons?? I dont know where he is staying. I think Pop? We shall see if that works out.

I have been having some on and off pain at the back of my neck. Feels like someone just wacked me with a baseball bat there. At least it does not last too long so its bearable, just takes your breath away. Oh the joy of cancer.

GAGWTA

 

[luvmarypoppins]

Diana - the seafood pie sounds like something dh and I would be interested in.

Peg - how is Kendalls teaching going?

Well I have sent about 6 e mails back and forth with my cousin. Sadly I feel like he doesnt want to see us all that much. He says, oh you would never be able to keep up with my dd and her family etc. And it seems like all he wants to do is spend saturday at the pool. sigh. Well hopefully we can meet up if only for a little while. I am guessing if its around 30 minutes it will be a miracle. I feel bad for my ds. I just want them to have some sense of family etc. and this is just putting a big burst in the bubble. Oh well, I will just concentrate on our family having a good time. What is the old saying about not being able to choose your relatives.

 

[Feralpeg]

Diana - the seafood pie sounds like something dh and I would be interested in.

Peg - how is Kendalls teaching going?

Well I have sent about 6 e mails back and forth with my cousin. Sadly I feel like he doesnt want to see us all that much. He says, oh you would never be able to keep up with my dd and her family etc. And it seems like all he wants to do is spend saturday at the pool. sigh. Well hopefully we can meet up if only for a little while. I am guessing if its around 30 minutes it will be a miracle. I feel bad for my ds. I just want them to have some sense of family etc. and this is just putting a big burst in the bubble. Oh well, I will just concentrate on our family having a good time. What is the old saying about not being able to choose your relatives.

That's a shame that your cousin isn't interested in spending more time with you. I understand about wanting your son to have more of a sense of family. I've often felt the same way about Kendall. She knows her cousins, but not well. They are older than her and they were never really that interested in getting to know her well. Maybe someday.

Thanks for asking about Kendall's teaching. Let's put it this way, she has a new appreciation for the job. She is teaching at a charter school in a low-income area. She has several kids in her classes that speak no English. The school doesn't have the resources to put these kids in ESOL classes. Kendall has put them next to kids that are bilingual to translate, but it makes it very hard and she is afraid these kids are going to get left behind in the lessons.

She also has a large number of kids with learning and/or behavioral issues. These are kids that weren't doing well in the public school system and have been moved to the charter school in hope of a better outcome. Unfortunately, they are mainstreaming the kids. In each of her classes, Kendall has at least a couple of kids who have real issues. She had only a small amount of training in college to work with learning and behavioral issues. For instance, she has two kids who are autistic and one who has Asperger's. The one little boy has meltdowns on a regular basis. This is true for the other teachers as well as Kendall. Kendall wants to help these kids, but doesn't want the rest of her class to suffer due to the time it takes to deal with these issues. It's really hard.

To make things worse, Kendall is in a new wing of the school. The school did not order the equipment for the teachers in that wing in time to receive it before school started. Kendall has been trying to teach without her Smartboard or any type of projection equipment. That may sound like no big deal. I didn't have those things when I was teaching. What I did have, that she doesn't have, is enough textbooks and workbooks for her students. To make it worse, each teacher is limited to the number of copies they can make. Since the school supplies the teachers with technology, they don't think the teachers need to use paper and toner making copies. So, she kind of has her hands tied. The school isn't sure when the equipment will arrive. Thank goodness for my wonderful sister. After hearing this, she went out and bought a projector for Kendall that she can connect to her laptop. This should make things easier until the school's equipment arrives.

The biggest thing I've noticed is how different things are from my days of teaching. Teachers have so much paperwork to do. In my day, I spent my time putting together lessons and teaching. Now, they spend an enormous amount of time documenting and meeting standards. Not sure I approve, but no one really care what I think.

Anyway, it's been a crazy couple of weeks for Kendall. I'm sure things will get easier as she gets used to things. Welcome to the world of being an adult, Kendall!