Dis Breast Cancer Survivors - GAGWTA!

[snappy]

I really like the OKW studios. More than enough for DH and I, even good with DD10 when we went last July.

It was an extremely laid back feeling there. I like POP too, but it is bustling while OKW seems more tranquil. Even the studios have a small balcony (porch on the first floor).

I have talked to people who had been long time owners back when you got free tickets to the parks. Gosh, I wish we had had the foresight to buy back in 1994 when we took our older kids to WDW. I think OKW was there then.
We just did not have a clue. As old as DH and I are now, I do wonder if we would get out $$ worth.

You know even if you buy just a few points, you certainly could buy additional points from other owners to either extend your trip or take additional trips when you use up all your points. It would be sort of like my sister's getaways. If you are willing to move to another place for the weekend you can really stretch the points.

Renting points was kind of fun, kind of risky but I also felt that way renting a villa from a private owner. At least with DVC you know what you are getting, assuming the owner renting to you is honest. The owner we rented to in July even emailed me in September to ask how we weathered the hurricanes. She was such a nice lady, she even helped me move the dates when my husband had a work issue. It seemed like a miracle at the time. I sure am glad we made those trips last year.

 

[Pea-n-Me]

Sorry about going on and on. I guess I am feeling sexy this morning.

LOL, I must be too (where's PD when you need him ) despite the fact I'm still in my pj's. The kids spent the night at our friends house and DH is making our lunch. Spoke too soon, kids just arrived back home.

Thank you for explaining shotgun houses to me. Now that you explain it I believe I have heard of them before. I just asked DH if he knew what one was and he said "it's a type of Southern house where the rooms all run together and if you shot a gun from the front it would go straight through to the back".

We have a farmer's porch, too. The term is used pretty loosely now, but it is basically a front porch with cover that I guess farmers used to keep vegetables and things on. I like it a lot because when we sit out there, neighbors come by and talk. My mother and I like to sit out there in the summertime (we actually added on the porch when we built the inlaw addition for her) and have a glass of wine. Inevitably, we are joined by others who are walking by. I miss that in the winter. In this neck of the woods there are a lot of mosquitos which make it hard to enjoy the open air at night, so we have a screened porch out back and are thinking of screening in part of the front porch this summer as well. When I was pregnant with the twins I was sidelined for the last three months of my pregnancy - July, August, September - and I spent everyday sitting out on that porch. Interesting summer, and yes, I enjoyed the quiet while it lasted.

 

[Pea-n-Me]

OKW is our second top choice. We know several people who own there, one just bought a resale. I like your description of it. We wanted to visit last month, but we never made it over, so we've never actually been there. We did drive through SSR last year. Have seen all the other on property DVC resorts. I do like the fact that the OKW rooms are a little bigger, and the fact that parking is closeby. There are so many pros and cons no matter where you buy. Seems to me a lot of people buy points at different places. Complicated as to how you can book, though, when you have multiple small contracts. We'll see. Thanks for your thoughts.

He could not sleep laying down because he had that drowning feeling,

Another classic sign of CHF, it's called orthopnea. A routine question that's asked on admission is how many pillows do you sleep with. Many have horrible sleep patterns as they can only sleep sitting upright. Of course, other lung conditions complicate this, such as COPD or obstructive sleep apnea, but even just CHF alone, it is a sign of fluid overload. When we begin to take fluid off, their sleep quality improves. See how important correct fluid balance is?

ETA: this site gives a good description of heart failure: http://www.heartfailureinfo.com/The...gle_ppc&kw=congestive_heart_failure_explained

 

[snappy]

When she stayed with us in September Dette showed me her medicine "cabinet". It was a huge clear plastic container some might use for storing craft supplies. It is what she stores her meds in even when not in evacuation mode. It was filled with bottles, and she no doubt was put on more stuff with the stomach thing. I often wonder about how all those meds interact, and if the docs are really aware of what the reactions are. She was in the hospital for a couple of months so I guess they at least knew exactly what she was taking since they had to prescribe everything there. I know one med was going to cost a couple thousand, I think some new antibiotic, but luckily insurance paid for it from the way the doc wrote it up.

On DVC (much more pleasant topic, isn't it?), I wonder how many owners actually do supplement their points by renting from others? Maybe I should ask that question on one of the DVC boards.

 

[snappy]

Thanks for the link. You are an amazing source of info. Thanks, thanks, thanks again.

Neat thing just happened. DS is working on this big English research paper (on Robert Browning, the English poet). I was after him to get the research done during Mardi Gras break. He did some, not much. Now tomorrow the outline and the note cards are all due. He has been working on it all week, a little at time, but he also had exams this week Mon-Wed. He was scheduled to work Friday, Saturday, Sunday nights about 4 or 5 pm to close (11 pm). Last night, almost at closing, they were told they had a problem today, someone had to come in for the 11 am shift. DS said he had a paper, but everyone else had a committment too. Somehow he ended up having to go, and he was counting on at least 5 or 6 good hours to finish up. DH and I are pretty mad about it, not at him, at Sicily's. So he decides to call up a friend he has had since middle school who just started working there last week. At first he says he can't sub for him this am, then he calls back almost immediately and tells him he'll work until 2pm. It gives him at least a little more time to finish up. I am so happy with that kid right now.

On top of all this, a group of kids from DS's HS marked up all the glass on his car with red/pink paint while it was parked by work last night, so DS cleaned it up some last night, and we are working on it this morning. It is a craze at school right now apparently. He cannot catch a break.

Thank goodness for the purple 409 and the the new bounty paper towels for glass surfaces. What a mess.

 

[Pea-n-Me]

I often wonder about how all those meds interact, and if the docs are really aware of what the reactions are

I know exactly what you are talking about. All I can say is that there is a well known combination of drugs that help in heart failure. They are tweaked a bit for individual patients, but most have to be on some combination of them in order for them to stay healthy.

And yes, there are a lot. And they all do different things. Like one helps the fluid come off; one lowers the resistance the heart has to pump against; one slows the heart to promote longer filling time (and hence better output); one opens the vessels so more blood can go in the upper chambers of the heart; one helps strenghten the heartbeat itself; some replace electrolytes lost from the diuretics; etc and those are just for the heart failure. Then you add pills the patient is already on for things like diabetes, high cholesterol, other medical problems, etc...and it can be really overwhelming. My mother complains because she has to take 3 pills a day and I'm forever telling her that at 80 years old, she's pretty lucky!

Sometimes patients go home and must be asking themselves the same thing. Or they can't afford them. Or they forget to pick them up at the pharmacy for three days. Or they didn't like the way one made them feel, etc. so they just stop taking them. And they don't report it. Not good at all. That's when we see them back again. So although there are a lot, they seem to somehow work pretty well, and "if it aint broke don't fix it" seems to apply in heart failure management.

 

[snappy]

Thanks for explaining about all the meds. I really had no idea, or at most a very vague one.

It did look to me that Dette was careful with taking her meds. In her case I think it was more the diet and just plain overdoing it.

She probably should go on disability. It is not a subject I feel comfortable broaching, Dette has two grown kids. I hope they step in again. Her daughter really has been involved but she works and is working at night on another masters. She seems to have boundless energy (no kids or husband).
My sister is on disability, and she mentioned Dette should begin the process. It can be a drawn out process. Dette isn't 65 yet, I think she is about 62 or 63.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Linda- I'm so glad you are here for Laurie re:Claudette... I'm sure it has helped her tremendously! I hope all goes well when you meet with the doc.

Laurie- Claudette sounds like a true Steel Magnolia!

I had something weird happen yesterday. I filled the script for Estring that my gyn/onc gave me and within an hour of inserting it, I started cramping and then later bleeding! I removed it and still had pretty bad cramps last night. When I called her today she said she's never had a patient have that reaction before...it figures! I did alot of considering before using it, but both my gyn/onc and onc say it's ok. I have one other bc sista who just started on it, so far it's been fine for her. I guess it was God's way of telling me I shouldn't use it...hey, I can take a hint!

 

[snappy]

You are right Laura, the info and links Linda provided have been very helpful, not only to understand what happened to Dette but also to comes to terms with my dad's illness. I am one of those people who believes info is power.

I have shared some of the info with DH. He talked to Dette today, she is still in an ER bed waiting for a bed to open up but she is able to rest comfortably. They are removing a lot of fluid. Her face is not as puffy. My MIL told DH she is going to talk to her about "retiring" and going on disability, till she is 65. Health insurance is the main concern.

I am sorry you had that reaction to your med. It does sound like you are being told it isn't for you. I would go with your instincts on this one. I hope the cramping episode is finished.

GAGWTA!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Laurie- It sounds like Claudette is responding well. I'm glad she's comfortable, but I sure hope they get her in a room soon! I know just the short time that my hubby spent in the ER was so much more stressful than when he was admitted. Of course, it was his first time, and Claudette is a veteran!

He's weaned himself off of caffiene!!! He'll drink, a couple of cups of decaf coffee to pretend in the morning, but then he drinks decaf herbal tea. I told him the little bit of caffiene in green tea is probably ok, I drink it and it doesn't bother me and I'm very sensitive to caffiene. I know this episode scared the crap out of him (all of us!). He went back to work yesterday but is off today to see his primary doc. I think he'll just do a once over and an EKG. Friday he'll see the cardiologist and have a 24hr halter heart moniter put on.

I was still crampy yesterday but I think I'm ok now. I'm still doing great as far as my colitis goes after my healing prayer service-praise God! I saw my GI doc on Fri and he's happy I'm better, whether by prayers or meds, lol! He's weaning me off the steroids, but slowly. I am sleeping about 5hrs most nights, so it's not too horrible.

Thinking of you all...

 

[Pea-n-Me]

GAGWTA!

Laura, that sounds like a scary experience with the Estring. I'm glad your colitis and your hubby are doing better. Best wishes to him with the caffeine reduction - that would be difficult for me, I do enjoy my coffee in the morning.

Thinking of Beth, her last note on Dan's thread sounded upbeat. Also thinking about Kelly, Donna, Monique, and the others here who are waiting to hear results. Keeping you all in my thoughts and prayers.

OT rant: I think next time I take a trip I'm not going to take so many pictures (almost 1500). I spent about 8 hrs yesterday between uploading my pictures (700) and selecting the best 250. Twice I lost all my work when I was done. And Saturday we spent 2 1/2 hrs making a DVD to bring to our friend's house but we were unable to actually burn it. So all this time and I have nothing to show for it, LOL. And it's not like I have all this time to spare, either.

Our kids have their First Communion in May but their First Pennance is Saturday. (I know we shouldn't be laughing but it's been really funny to hear them "practicing" telling their sins ). For the First Communion I'm trying to decide whether to keep it simple and just invite the grandparents and/or godparents and go have a nice lunch at a lovely Inn by the ocean afterward, or have a cookout and invite everyone. I'm leaning toward just the grandparents and godparents. I think it will be more intimate and I don't really like to make people feel obligated. I was going to throw a cookout for fun later on, we were planning to bring the whole family together at that time for a beach picture which is long overdue. Thoughts?

Wishing everyone a nice day.

 

[snappy]

Laura, hooray for you DH giving up caffiene cold turkey. I have tried to give it up, and I always get bad headaches. I suffer every time I have to fast for my thyroid blood workups. I have however reduced it to two cups of coffee a day. I also hardly ever drink diet cokes or the like anymore.

What I am hooked on as I probably have said is herbal teas. My favorites are the Celestial Seasoning blueberry and tangerine orange although I have many other flavors in my pantry as well. It is rare that I don't go through 4 teabags a day. But I only drink it on ice. Helps with the hot flash thing.
Which BTW is back to haunt me with the humidity levels lately. Luckily, this week is looking cooler and drier.

Glad you are feeling better overall. Hey, 5 hours of sleep is better than none. I have taking two benedryl generic pills each night to combat allergies (oak pollen is a plague on this planet). Another benefit is sleeping through the night. Strange dreams though.

I think Beth is having her picc line out and her new port placed today. Prayers for her this am.

Aren't you seeing your surgeon this week Linda, tomorrow? Good luck.

Congrats on your twins' First Reconciliation and Communion, Linda. Second grade for each of my children has really been a special time for me. We have done two big all inclusive First Communion shebangs. It was any excuse for a get together for a few years there (Is it Wednesday, let's party). I think it is in the water in New Orleans or something. I will say I got pretty stressed getting everything together, and I thought it impaired the spiritual nature of the occasion for me personally to have too much commotion. But we did do that for our first two. We invited friends and family, and our house was smallish so everything spilled outside.
We had a lot of food, decorations, etc.

In 2004 for DD10 we just invited the two grandmas, my sister and her husband, Claudette, DH's other SIL and DD's godmother (her godfather lives in NY and visits infrequently). It seemed like a much more spiritual experience. Her First Communion was just a couple of weeks after I was diagnosed, and my scans were scheduled for the next day.
So I was not all that relaxed. However, I still liked the way it seemed more centered around the importance of the day than our precious celebrations.

I think having a big get together later would be my first choice. I think extended family would understand. What have other family members planned for their kids' First Communion days?

I am going to have to take Snappy for a long walk today, damn the hay fever. It is so beautiful outside.

GAGWTA!!!

 

[bubbleprincessmom]

found your thread and while I haven't been able to read through all the responses I got enough of a "feel" for you good ladies that I thought I would post here. I had a mamo last Thursday and yesterday (monday) got a call that I needed to come in on Wednesday for more views of the right breast. they found microcalcifacations and want to take a closer look. She said the radiologist would be able to tell me right away what they found. Been doing some reading online and not sure what to think. In the middle of a divorce right now (from my husband who is currently deployed to Iraq....he just wants to be "alone" and not married anymore...this after 16 years of marriage but than thats another post) and will lose my insurance when it is finished so just have a lot on my plate right now. Trying not to freak and worry but its hard...I'm adopted so have no idea of family history. I'M GOING TO BE FINE!!!!!

 

[snappy]

Yes, you will be fine, bubbleprincessmom.

First thing, I am glad you found our thread and feel comfortable posting.
Those of us here who are cancer survivors as well as cancer supporters find boundless rewards in helping other women seeking, info, support, etc.

You did not specify if the mammo Thursday was your first one or an ongoing annual one. If it is an ongoing annual one, the radiologist will compare it and the additional views you have tomorrow (probably magnified or what they call diagnostic mammos) with your previous films.

I am certainly no expert but I'll tell you what happened in my case. I am 52 and have been having mammos since age 40. When my annual mammo in April, 2004 showed calcifications in my left breast, they notified my GYN, and he called me to go have the diagnostic views. The radiologist did come in to talk to me after she read the views before I left. She gave me a copy of what was called the bi-Rad report and recommended I have a stereotactic needle biopsy, a fairly non-invasive test. The bi-Rad is a scale these docs use to classifiy mammo results, from 1 being the least troublesome to 5 being the most. I was a "4", meaning suspicious calcifications. At this point I got in touch with my GYN, he referred me to a surgeon who would then decide if I needed a biopsy after looking at the views and examining me. All three, the radiologist, the GYN, and the surgeon said only about 20 percent of people with calcifications that are of concern on a mammo end up being cancer. I was in the unlucky 20 per cent. My sister went through the same thing a couple of weeks later, her area of calcifications that showed up on her mammo was much larger and definitely concerned her surgeon, especially since I had just been diagnosed. She had a surgical biopsy, which was more invasive, but they removed the entire area, and it was luckily benign.

The thing about calcifications, as you may have read if you have been researching this stuff, is that all women have them. They are suspicious particularly when they are small, varying in shape, and "clustered" around something. They are not actually cancer but they can appear clustered around cancer.

Depending on your age the calcifications may not be that easy to really see on mammos. Younger woman generally have denser breasts. Often ultrasound is used on younger women to determine if a biopsy really is needed.

One thing I would advise is to ask for copies of all reports, like the bi-Rad report. I actually think it is good to start a file so that even if everything is a ok, you have a record of what was found. I put copies of my biopsies, my scans, and whatever else I get in the file.

I am sorry you are facing this. Anxiety about this is very much to be expected. I am especially concerned that you are alone and going through the stuff with your divorce. It really does help to have some one you care about in your life to talk about your feelings. Please feel free to ask any questions you might have tonight or tomorrow or whenever as this unfolds. There are some ladies here that know a lot, and who also have some very good resources. I will pray that this is a false alarm. Please let us know what happens.

 

[NHAnn]

Hi bubbleprincess... welcome to our thread. Sorry you have so much on your plate right now. But your attitude that you "WILL BE FINE" is a huge asset. I am by nature a worry wart...queen of the "OMG, what if...." types..and my DH is always saying to me "Hon, don't bleed until you're shot!!" Easier said than done!! Last year at 48 a suspicious cluster of microcalcs appeared on my annual mammo. I was not overly concerned at first as I'd had some callbacks around 1999 and again a couple years later for magnified views at 6 month intervals for awhile. The ones last year though were very sus[piciou and hadn't appeared on prior films. I ended up having a surgical biopsy (the area was not condusive to the the stereotactic technique snappy decribed). The biopsy revealed DCIS (ductal carcinoma in situ) This is sometimes called non-invasive or pre-cancer. I was treated with a re-excision to get clean margins of the area and then 5 weeks of radiation.

Chances are really really good that this is nothing. My docs put the percentage of microcalcs that are benign even a little better than snappy's indicated , at 80-85%. It is hard not to freak, but I guess the best advice I can give you is...try not to freak! It IS most likely nothing and even if it IS anything it is going to be very early and cureable or very treatable. Try to relax and take things a step at a time...( I know I know, easier said than done)

I hope you will feel comfortable coming here for support, info, and a bit of diversion too ....I'll be thinking of you tomorrow ...let us know how it goes!!

 

[Pea-n-Me]

Welcome, bubbleprincessmom. I'm sorry you have to join us, but glad you stopped by. I see that snappy and Ann have done a wonderful job of explaining microcalcifications to you. We have also had several posters here over the last year whose microcalcifications were benign as well. We'll be thinking of you and praying that you have benign results too. A word of advice - reading about breast cancer is terrifying, so read enough that you learn what you need to know, and then immerse yourself in some junky magazines or trashy novels and try to stay busy as a diversion. The waiting seems to be the hardest part for most of us.

Best wishes to you, and keep us updated!

 

[bubbleprincessmom]

thanks guys! This is a yearly repeat mamo so they do have baseline readings to compare to. I have quit reading everything but your replies so as not to overload my mind with worse case stories. I am gone most of the day tommorrow but will post when I get home. thanks again!!!

 

[snappy]

Oh, bubbleprincessmom, I hope I did not include too much information in my earlier post. It really is best not to jump ahead to what may never happen in your case. Linda is absolutely right, try and find ways to distract yourself if possible. I really don't want you to end up with info overload. Good luck tomorrow.

Linda, isn't your visit with the surgeon tomorrow, as well? I hope you get the answers you need. Please let us know if what you decide to do about the surgery.

My doggy, Snappy got two walks today. It was a fantastic day here weather wise, after a hot and mucky weekend. I did my hair after our walk and thought it looked pretty good for a change (I am getting very grey and have given up on coloring it). I went in for a haircut and even the hairdresser complimented me on how I styled it. I was also kind of dressed up for a change and wearing some cropped pants that have not fit me for awhile until lately. I guess it is the weather but I feel good.

DH joined Snappy and me for our second walk tonight. He checked on Dette today, they finally found a room for her yesterday, today she went home. She was down 9 pounds by the time they finished removing fluid. That is a lot when you are just 115 pounds. The doc at Touro wanted to do an angioplasty but Dette's daughter spoke right up and insisted he speak to her long time cardiologist at the hospital where she was laid up for so long.
He advised against up. The doc wanting the test got a bit huffy with the daughter, asked her who had medical power of attorney. She huffed right back, and said, if you had looked at the chart you would see I have it.
Anyway, Dette is glad she is home. I am going to talk to DH about sharing some of the info you posted with Dette, Linda. Thanks again.

Hope you sleep again tonight well, Laura.

I have to stop with this long posts. Sorry everyone.

 

[Pea-n-Me]

LOL, snappy, don't be silly! I'm the Queen of Long Posts! No need to apologize, you have great, interesting posts! It sounds like you are doing well, walking twice a day is so good for you! I wish the weather was conducive to walking around here. It's been 33 degrees for the last few days with a bitter cold wind. I was planning a walk with Liesl, DH and my FIL yesterday, but it was just too cold to be enjoyable for me. DH took her down the beach anyway.

I'm glad Claudette is home now. This might be a good time to give her the dietary information and CHF article if she doesn't already have it. We do a lot of procedures like angioplasty/stenting where we are if it is known that a blockage is contributing to the CHF (common). The procedures can help the overall medical picture in CHF, however I know Claudette does have a lot of other medical issues to contend with. If she's up for it, she could always get another opinion.

Yes, I am seeing the surgeon tomorrow. Thanks for reminding me, I'd kind of forgotten it until I saw your earlier post (trying not to think about it too much and apparently doing a pretty good job, LOL ). I spent today finally getting my pictures straightened out, it took the better part of the day. I ended up doing a Photo Book - a coffee table style book of photos with captions. I can't wait to see the final project! I had to use just 250 out of 1500 pictures, tough deciding. I think I'll leave my camera at home next time.

We all have head colds and sore throats here. I'll be glad when the weather turns warmer, this is getting old - it's the second time since our trip we've all been sick.

 

[snappy]

Your photo book sounds awesome, Linda. You guys took a lot of pictures on your trip. What kind of camera do you have. I got some good ones back in January at WDW, especially at Animal Kingdom the day DD10 had her face painted. It was a very clear bright day. My indoors do not come out good though. I guess I need a new digital camera.

Sorry you guys have colds and sore throats. Hope everyone gets well soon.

Good luck at your doctor visit.

Also saying another prayer for Bubbleprincessmom for her diagnostic mammo today.

I wonder how Beth did yesterday?

GAGWTA for all of you today.