Dis Breast Cancer Survivors - GAGWTA!

[Laurajean1014]

Linda, I think you are handling it very well. Just don't let her get under your skin. Just as she has the right to her beliefs and approach, so do you. Tell her so. I wouldn't be negative about her approach (even though you feel that way). I'd just say, you have your way and I have mine. Glad it's working for you. My way is working for me too. Then change the subject or walk away.

Susan, I can give you the details on my experiences with Tamoxifen if you'd like. Just PM me. Some of what I'd say has trouble getting past the filters. I was (and still am) premenopausal and have been on Tamoxifen since June of 2002. Nothing has been bad enough to make me stop taking it. I'm pretty determined to stick with it, but there have been some negative side effects.

Merry - I think you and I have a similar situation. I opted for the voluntary radiation and am almost done. Yay. However, I am very skeptical starting Tamoxifen (which is also voluntary for me).

I would love to hear your experience with it.

I hope all is well and I hope all of you have a very healthy year!

 

[Laurajean1014]

Can I ask a favor from all of you?

A gentle man that I know just passed away on Thursday evening due to a very rare form of cancer. The doctors were baffled by the complexity of the fast growing cancer, and gave him 6 months. Through experimental surgeries and drugs, he defied the odds and lived on for more than 5 years passed their expectations.

He was 42. He leaves behind a wife, and two boys 11 and 9.

The favor: please say a pray for Matt and for his family.

Thank you.

 

[MerryPoppins]

LJ, I sent you a PM. Feel free to ask if you have any questions. I'll pray for Matt's family.

 

[snappy]

Prayers said for Matt and his family, Laurajean1014.

About Tamoxifen, as I may have said earlier, I have been taking it since summer of 2004. I was concerned about taking it after reading about the
possible side effects.

I was almost 51, thought I was premenopausal too but I must have been very close to menopause, I was there after no more than 60 days on Tamoxifen. Going into menopause has NOT created much of a problem for me, I think my age is actually a plus here (for a change). I am not sure how typical my experience is. Just as each BC patient has a unique situation, I think each woman has a unique experience with menopause. My younger sister has had many more problems with menopause, and it all started much earlier for her.

I do have hot flashes but they are manageable. I have not really gained any since being on it, I was allready overweight. I would like to lose a good bit, I really can't honestly blame the drug though, I need to eat less and exercise more. Same old story.

Something scary happened today- DD10 was outside climbing a tree with a her friend. They came in, DD was holding her eye, saying she had something in her eye. We were checking it out, getting out drops, eyewash etc, and she complained of feeling dizzy so DH had her sit down in a chair next to him. Within a few seconds she fainted. DH yelled for me to go get our neighbor (she is our pediatrician), but ended up picking her up and going outside. DD started to come to pretty fast. DH carried her over to our neighbors and she looked at her. Her eye was still pretty red, she was complaining of being very hot (her clothes were soaked with perspiration), and her skin color was as pale as could be (she is a blue eyed redhead so her skin is extremely white normally). She seemed beter immediately, I had her change to lighter, dry clothing, and we washed out the eye. She has been taking predisone since Thursday because she has a bad rash on her arm (the dermatologist said it most probably is poison ivy or oak).

Thankfully, her eye looks good, her color is back, her appetite is good, but I have her resting this afternoon. One look at her after she fainted and her head dropped back and those little eyes rolled back in her head, man that was scary. I could feel my heart pumping. Not good when you are afraid something is wrong with your kid. Whew!!!!

 

[Pea-n-Me]

Laurie, I had to answer you first because I know how worried you must be about your daughter. I would bet any money she had a "vasovagal reaction" to the pain in her eye. We see it happen in the hospital a lot and I agree it is very scary. It happens when someone strains, as if they're having a BM (we don't realize we're doing it sometimes but if you think about it, you do do it when something like that happens). That causes stimulation of the vagus nerve, which is part of the "slowing down" (symathetic) nervous system - i.e. the opposite of fight or flight. It causes the heart to slow down quite a bit and BP to drop momentarily, which causes the person to "faint". Once the stimulus stops, it resolves itself. We can see this all happening on the cardiac monitors as well as in the patient himself, so when it happens for us we initiate a code, but once the patient starts to come around we call it off. It really does look like "the real thing". I'm sure she'll be ok -keep us updated.

Vasovagal: http://www.webmd.com/hw/health_guide_atoz/stv5362.asp

Laurajean, that is very sad about your friend. I'm glad he got 5 years with his family, I suppose that was a gift. It must be so hard still, though. I'll keep them in my prayers.

Just wondering how Laura is doing, she hasn't posted much lately. Thinking of you sista, and hoping you're ok.

 

[NHAnn]

Oh my goodness snappy, my heart was pounding reading what happened with your DD! Hope all is well now!

Laurajean..nice to see you here .......prayers said for MAtt's family!

I am posting from my new laptop tonight and excited about that

Also excited about the fact that DH and I met with a builder today. We have owned a piece of land here in town for more than 10 years....have often talekd about building on it. Right now we live in a ranch house which is actually a condo, this development has apartment style units, townhouse units and 12 single family home units. DH bought this after his divorce from his first wife, I had a smaller townhouse unit in another development across town where I lived with DD after my divorce. So this one was bigger and we ended up here. And we were always too busy or too something to actually follow through on the building-a-house idea. DD retired early from his long-time career postion a couple of years ago and DD graduated high school so we began to resurrect the idea in earnest a year or so ago....DH is working fewer hours than before and we felt the time was right to act on it...kind of now or never (my DH is 10+ yrs older than I) Then of course most of you remember my joining you here on the thread late last spring And since then I've had a lot of internal conflict and confusion about the house building idea among other things. But some wise words on this thread a few pages back kind of got me out of my funk about it....and we met with a builder this morning and it went really well.

Oh and the Patriots one so I'm in a good mood tonight

 

[Pea-n-Me]

That's great news, Ann, and good for you!! I look forward to hearing about your experiences with the building process.

 

[NHAnn]

I look forward to hearing about your experiences with the building process.

Hahaha...you may not, I tend to get whiney when I'm stressed LOL
But it's all your fault ....it was the Anna story that turned a light bulb on in my head

 

[Pea-n-Me]

Hahaha...you may not, I tend to get whiney when I'm stressed LOL

We don't mind!!

But it's all your fault ....it was the Anna story that turned a light bulb on in my head

Told you there was something about that lady that was special.

 

[laurabelle]

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

Laurajean-I'm so sorry...I'll be praying for his family.
I did the full 5 yrs of Tam. No bad side effects here, hopefully it helped.

Laurie- That would have freaked me out too! How awful to watch your child do that, fainting is so scary. I'm so glad we have a nurse here to explain it!

Ann- How exciting! I'm glad you're making plans and getting started. Lord willing, we'll be remodeling our kitchen soon, fun, fun, fun! lol! But totally worth it in the end! Our oven died on Christmas Day... a sign from God that it's time!

I'm doing ok, just busy. I spent 5hrs at the hospital on Thur. for pre-op and onc appts, whining in my head (I hate that place!) dreading going back in, walking through there picturing my summer vacation there and not wanting to repeat it! So far no change with the meds. It's not bad, but not better either. I start my liquid diet today for surgery Tue., which is actually probably a good thing to give my tummy a rest.

When I saw my onc Thur. she said people with tram flaps are having mamms now. I didn't have a flap, just implants and I said well I have silicone and I don't think mamms read well and she said I can go for an MRI, but she said we can wait until next year to do it since my implants are newish and cancer-wise things are ok.
Anybody else been told this? Things are constantly changing in the cancer world, that's a good thing right!?!


My dd's sleepover party was last night, they must not have been too loud, or I was really tired, because they didn't wake me...

 

[snappy]

thanks all, our DD is looking good today, we had a good night. She laid down on my bed with me till late while we read. Her eye still looks red but she does not feel anything in it anymore so I guess we were successful at washing it out.

Linda, thanks for looking up the vasovagal reaction. Dr. Sandy, our neighbor/pediatrician who we rushed over to see when it happened used that term as well. I had never heard of it so I asked her to explain it but I proceeded to forget about it in all the hoopla. I am also wondering about the Predisone she started on Thursday for what was diagnosed as poison ivy, one of the side effects is dizziness. If it happens again, I'll call the doc who prescribed it. Her rash on her arm is clearing up somewhat so maybe we can end the Predisone.

She seems to have more energy today, and I want to get some exercise so we are going outside and walk the dog, ride bikes. Our weather has been truly wonderful , coolish, no wind, low humidity for a change. DS17 has his confirmation retreat today, DH is working (year end financial stuff), and DD15 is at her friend's house so I just have to concentrate on DD10 and myself.

Ann, how exciting about building. Glad your initial meeting went well. How wonderful it must be to have everything new. We have only lived in previously owned houses (just two here in Baton Rouge and in New Orleans)
since we married in 1978. Seems like something is always needing repairing or replacing, along with our vehicles. At some point I want to sell our house and buy into a development my husband's employer is working on, closer in to most of the stuff we do, basically a town home, no yard, etc. We have to wait at least until our teens are outta here. I want my mom to get a place in there too, a small one.

Laura, I figured you must be busy getting ready for your surgery. Glad you posted though to let us know. Isn't our surgery on the 10th?

Hope Beth is OK too. Also, has anyone heard from Lessa of Pern? It has been a while, since November I think since she posted. That worries me.

Update on Claudette, still in the hospital, but out of ICU. The fluid problem has not resolved, she is still struggling with breathing. It is kind of catch 22-she was dehydrated so they gave her intravenous fluids but her heart, kidneys can't seem to keep up with the extra fluid. It sounds ominously like congestive heart failure (what my dad and my maternal grandmother succumbed to) but my MIL is not using that term and I am not bringing it up. My sister (trained and worked as a respiratory tech) said it could be a temporary CHF episode rather than a chronic one due to the fluids they are giving her. Claudette's immediate family all have colds so they are staying away from her. I think I'll go down and stay with her some next week. I just dread driving down, I get anxious on the Bonne Carre spillway (long bridge over water) if I am the driver. It is ok when someone else drives. My husband keeps telling me I can do it. The traffic from here to New Orleans is improved but still heavy. If I have to stop on that bridge, I dunno, might just freak me out. I am going to bring my relaxing music (just bought some new relaxing CHRISTMAS music on sale at Target) and try to calm myself with that.

DH can't go down right now with his work responsibilities, so I really want to do what I can.

 

[Pea-n-Me]

GAGWTA!

Interesting about the mammograms, Laura. I'd love to see the studies or reasoning behind that. Thanks for reminding me, I have to start my yearly MRIs this March, probably need to schedule (do I have to have that, LOL). I know what you mean about that feeling of being at the hospital. I can be walking along my own hospital and have two completely different feelings. As an employee, it's so different, enjoyable. If my mind has a flashback to my surgery, or when I go for tests there myself, it's more a feeling of uneasiness. Strange.



We are also planning a renovation of our home. We initially talked to our builder two years before my illness, but you know how they are, he was busy (but we love him nonetheless ). Then I got sick and put everything on hold. Then I started thinking maybe I shouldn't. Now the plans have been done and we're waiting until he's available again (no rush, LOL). I also have to arrange the financing, but I'm waiting until after our trip next month since I'm busy getting ready for that. (DH and I have been toying with the idea of DVC also, even if it means cutting back a bit on something on our renovation, and slipping the cost of a small contract in when we do our financing). We'll see...



Laura, would love to hear what you're doing in your kitchen. Our home is fairly small, but we basically love the style (tri level) and the neighborhood. We've been here 16 years, it was our first home. We need a little more space on the first level, mainly for when we have company. We built an in-law addition years ago and it works out well for my mother. We're planning to tear apart the first level and expand it out a bit, vault the ceilings and renovate the kitchen. I don't want anything fancy, just fresh and new. We'll probably also renovate the lower level at the same time, but that won't involve much, just new walls and floor basically, then the whole house will be redone (we've done upstairs already ourselves). The nice thing about this builder is we know him from our previous addition and DH is going to help him with the work so it should help keep the costs down.



Funny story: in the summer of 04, I had just finished all my treatment when one evening the bathroom floor got wet during the kid's bath, and you could see the already wet underside of the old linoleum widening. It was the final straw with that bathroom, we'd wanted to renovate it since we moved here. Right then and there DH said "do you want me to tear it apart?" and I said yes. I left the room and heard a lot of noise but was afraid to look. Later that night, he brought me up there and the whole room was stripped to the studs, LOL. (You have to understand DH - they call him the "Bull" at work and now you know why). I guess in a way it was cathartic. Anyway, he put in a new window, walls, cut the doorway to expand it, expanded and updated two small closets and put in a pocket door all by himself (though we had the pros come in to plaster, tile, and do the new floor ). I had fun picking out all the fixtures and curtains, etc. When it was all done we couldn't believe how beautiful it looked! Now picture this: for most of that month I think, the four of us and the dog sat in the new bathroom looking around the room in amazement, going "Wow, this is the nicest room in the whole house"! We didn't want to leave! It's hard for me to imagine feeling that way when the whole house is done, but I'm sure looking forward to it!



So what about you? And Ann, what is your new house going to be like? Anyone else? Would love to hear about your homes if you feel like sharing.

Enjoy your Sunday, everyone. It's snowing here, and very

 

[Pea-n-Me]

Laurie, we must have been writing at the same time. Thanks for the update, glad your DD is ok. I suppose the prednisone could have contributed somehow (maybe a bit dehydrated?) but it sounds like a classic vasovagal that was a response to the pain in her eye (that was the big clue). I never realized how severe eye pain could be until one day I was in a lumberyard and a teeny sliver of wood flew into my eye and got lodged under my eyelid. The pain was excruciating!! I was sent for an emergency trip into Mass Eye and Ear and it was the longest ride of my life. I couldn't open either eye because of the pain. Once there they inverted my eyelid under a microscope and found the wood (which the local docs couldn't find). I had a major corneal abrasion from it scratching my eyeball, and had to keep the eye bandaged for two weeks and take pain medication. Bottom line: mother nature does an excellent job of protecting our precious eyesight via the pain response she's programmed into our eyes. Ask your DD to rate the eye pain when the incident occurred on a scale of 1-10 (one being not bad and 10 being severe). It will be interesting to see what she says.

Prayers for Claudette. I understand the issue with the fluid status. Sometimes people can be in a "fluid overload" state which can be very much like CHF, though it may not actually be CHF. They should be able to tell with an echocardiogram which it is, have they done one to see? Because if it is truly CHF there are medications which would help her overall picture which she should be on. Too complicated to get into here, but feel free to PM me anytime if I can help you sort it out, I'd be happy to.

HTH.

P.S. I think that Lessa is no longer on the Dis, but hopefully she's following this thread anyway, is doing well, and knows we're still thinking about her. Lessa, if you're out there, can you let us know how you're doing?

 

[snappy]

Great bathroom story, Linda!! Gotta love positive bathroom stories, they are so rare!!1

Our house was built early on in this development, in the section with larger lots. It is one story (my knees are thankful for that), and the style is typical south Louisiana, Acadian. Kinda like a ranch, but with a large wrap around front porch with a railing all around and brick steps up to the porch, smaller porch in the back. Sounds ok until you start to paint all the front and back porch facing, overhang, railing, etc. The rest of the house is brick.

In my husband's spare time lately he has sanded all the wood planks and put a Kilz layer down as a base coat(good for mildew control). We have yet to do the top coat, just too crazy around here. We had the painting done back in 2000 but it was a summer job when the temps were in the upper nineties (we shoulda known better). The paint peeled off with a vengeance so DH decided he would do it himself and get it right. I guess we just didn't count on all the stuff that happened in 2005.

We had some stuff done to the house before we moved in back in 1999.
We had the living room, bedroom and hallway painted, and had new wall paper hung in the bathrooms and kitchen (major task). We also changed out all the carpet and installed new in the bedrooms and hardwood floors in the living room, dining room and hallway to the bedrooms. We also redid our bath, the old tub had carpet up to the side of a garden type tub which was the original (circa 1984 I think and yucky gold shag), so we had a lot to do. We put in a jacuzzi and had tile put in on the floor and tub surround. We ended up putting white ceramic tile on countertops, new lavatory sinks and fixtures in all 3 baths. That part was truly a mess, it was not finished before school started and when we moved in. Our bathrooms were low tech for a long while. I regret doing that part.

The kitchen we did not do much with, other than we have replaced the dishwasher and stovetop and the wall paper. It needs new flooring and countertops and sink. The cabinets are oak ones and it is a nice U shaped configuration, I think they just need a really good cleaning and wax job. I thought we might do the floors and countertops this year-DH's employer has a construction company and they are working on a project nearby so we could get a reasonable deal on it but we have spent too much money recently. We bought my Dsister's 98 Camry for DD15 when she traded up to a new Sienna van, it was too good of a deal to pass up. Also, our car insurance bill with two teens is ridiculous. They will both have to work this summer to help out. I really should go back to work, I keep thinking my energy level will increase when getting my thyroid function leveled off but I guess I will never feel like I did in the 90's. Hard to accept.

I like our area, the neighbors are absolutely wonderful, generous, could not be better. However, we are on the outskirts of the city and traffic is bad (although it is crazy throughout Baton Rouge). One good thing is we can avoid the interstate most of the time and take back roads but the mileage is still there. I am also very tired of having a big yard. DS is great with doing yardwork but when he graduates HS, ???. We have way too many large, tall trees. Very scary with hurricanes. We also have the most leaves ever this year, I think because of the great caterpillar invasion this spring (they ate every leaf off of every tree) and the new growth was unbelievable. We lost leaves in both hurricanes but they too seemed to be replaced by more than before.

One good thing is we are close to LSU which is where at least DS will probably attend college. DD15 I can see going farther afield to school (she is a high achiever). We'll see.

I would love to buy into DVC as well, Linda. My husband was agreeable last year when we stayed at OKW two separate times by renting points (5 days in a studio, low cost stays). I would be willing to work part time just to fund DVC and vacation stuff. I guess I am more the frugal one, and as the one with cancer, I just hesitate at the long term decisions. I am looking at my retirement stuff right now and I really wonder about using the standard expected life tables. No one knows what's in store, but I guess I feel a bit more vulnerable than cancer free folks.

Well, this is too long, but you did ask, Linda.

Anyone else?

 

[Pea-n-Me]

Well, this is too long, but you did ask, Linda.

LOL, Laurie - I'm not one to complain about long posts. Seriously, I enjoyed reading it, thanks for posting. It sounds really nice, actually! How did you like OKW, BTW?

Tell us about your houses, guys!

 

[MinnieM3]

Barely checking in..........
Feeling better pain wise with my back, but the prednsone realoly does a number on me. Still not even close to geting back to my classroom and that bothers me so.

"Tomoww's when they're supppose dto decide to out me back in to hospital for more tests ind extensive pain managements. I am so deprssed I can't beging to tell you.

 

[MinnieM3]

Forgot... wil be doing the bispty thing sometime this week I think on the thing in my lungs

 

[Pea-n-Me]

Beth, so sorry to hear things aren't better yet. Will keep lots of prayers coming your way.

 

[snappy]

Sending prayers your way, Beth. If you can let try to post the time of your biopsy, I would like to pray for you whil you are having it.

Linda, I really liked OKW. Our first stay was in a handicapped room so that was less than desirable. We checked in late, and that was what was left on the ground floor. That was a good trip though, last February during Mardi Gras when DS was marching with his HS band at MK. The weather was exceptionally nice. I really liked the bus service from OKW. I also like being able to drive right up to your building. DD10 liked the main pool, especially the new slide. DD15 went with us the first trip, she preferred the quiet pool very near our unit. I loved the balcony. I think staying in a a or 2 bedroom would be even better. We did use the fridge in the room as well as the microwave. And having the free washer driers in the area by the pool was very convenient. Second trip we were on the third floor. Better experience with the room, we were directly across from the hospitality area with the pool, etc. I thought the beds were great in the studio, no sofa which is a little wierd but for us the two queens worked better than one bed and a couch. Disney stocks the room with a small thing of dish soap, paper cups, plastic flatware and paper plates and bowls. The non-handicapped room had lots of cabinet space under the bathroom sink which was nice, as well as a real closet albeit a small one.

I think OKW is showing its age just a little. However, both rooms we had were clean and in good repair. I love the laid back atmosphere. I am sure I would also love all the others too.

We have also rented villas from owners on 4 different trips to WDW. This is an economical way to go and have separate rooms for each kid. As I am not sure how many more times our teens will want to travel with us, that option seems less likely. A OKW studio or 1 bedroom would be great as long as it is only Dh, myself and DD10. I liked that we all did not have to get going at the same time, you can hop on the bus at your leisure whereas with the villa, we all had to depart together. Each one of us has our own preferences for wake up time, so that gets tricky.

If you are really thinking of buying DVC, I would advise renting points first to check it out. It really is a BIG investment relative to renting points or renting villas. If maid service is important to you though you might want to reconsider. It really is different than staying in a hotel room.

 

[donnabres]

Good evening everyone,

Have not written for a while, but have been lurking in the background. I love your stories, and the information that you all provide. Nothing has changed in my medical life, but that's good at this point. I don't go back to the Dr. for 2 more weeks. Hopefully the tumor will have shrink a little more than it did last month.

Talking about houses, and the finances, with being sick, that I can fully understand. We have an old home. We have done a lot of work on it over the years, but by no way will it ever be my dream home. But, it's ours, and paid for, and I thank God every day for our blessings.

I have found the past few months since my diagnosis that I have been very thrifty. Things that I would have spent money on before, I find myself doing without because you just don't know what's in store down the line. My husband has also been out of work since May and out of unemployment. I am the only one working now, and I am really trying to be good. We are very blessed, but the purse strings have been tightened.

Have been busy getting ready for the tax season. I usually have taught a lot of classes in the past, but this year I am taking the easy way out and just sitting in and letting other people teach me. That was hard to do at first, but decided that it was something I needed to do at least for this year.

Linda, I may see you Tues. night in Hanover. Monique invited me to join her. Took a trial trip over there today. Boy did I get lost!!!!!!!!!!!!!!! Hope I will be able to find it Tues. I can't wait to meet Monique, and hopefully you too.

My thoughts and prayers are with each and everyone of you, Good luck to all your home improvements.

Donna