Dis Breast Cancer Survivors Part IV - GAGWTA

[CherylDan]

Smiley, I hope the sleeping pills work for you. I understand exactly what you are saying...just lying there, unable to turn off the brain for hours! I have ambien that I take once in awhile, and it really does help. My DH just doesn't get it, no matter how much I try to explain it - he is one of the people that fall asleep instantly.

Peg, good to hear that things are getting easier. How nice that you were able to get out to DTD - that was a long way to walk! I bet it was amazing to be out and about.

Laurie, hope your cousin gets good results.....it's so frustrating being in the hurry up and wait mode - why don't doctors get that???

Carrie, welcome! Wonderful news that you won't need chemo! I guess I'll introduce myself........diagnosed in '06 at age 44 (mastectomy, chemo, radiation, tamoxifen) diagnosed with mets in '11 (chemo) and am currently on arimidex. Never had reconstruction, so can't be of help with that, but anything else feel free to ask.

Hope everyone has a great weekend. GAGWTA!!

 

[Pea-n-Me]

May I join you? I had a bilateral mastectomy on 3/28/13. I had tissue expanders put in, but no fills yet, because I am not fully healed on one side. It's really kind of depressing. I thought I'd be so much further along by now. I had stage 1/IDC/multi focal dcis on right and multi focal dcis on left all dcis was stage 3 high nuclear grade. It's been a long few months here. I just found out I won't be getting chemo but started Tamoxifen last week. I'm 46. The oncologist says she'd like to see me on it for 10 years.

I had a trip planned for August that I figured would fall into my swap surgery mess and I'd have to cancel it. But, alas, that was not to be. My plastic surgeon will not be seeing this through. He's retiring in 4 weeks, so I've had to find another. The new one isn't available until early June, so it'll all work out. But I asked the new one about August vacation and he said fine, because by the time he does the fills and gets me an OR, we can wait until Sept. So there is my story.

Of course you can join us! Welcome! Trip planning must be such a good distraction for you. That's how I wound up here, too!

Good news! I had my fifth chemo on Tuesday. This was the first for Taxol. So far, I'm feeling great! No nausea. I can still taste things! I will have Taxol each Tuesday for the next three weeks. Then, I am done with chemo and ready for radiation. I can't believe I'm getting so close to the end of my treatments. It hasn't been fun, but it has gone by fairly quickly. I am so lucky!

Are you still feeling ok now? Taxol is different than A/C, but can be hard for a lot of people. I found it very difficult. Maybe they've found something that helps it now. I could barely walk at one point for 36 hrs. Our co-founder here (laurabelle) used to just sit in the tub, lol. Let us know.

I am waiting to hear with my cousin that lives here in BR the results from her breast biopsy. The breast surgeon has a new policy that they won't call with results, but they did ot tell her that during her consultation last week. Her biopsy was Monday of this week and they want her to wait until her follow up visit on Tuesday. A nurse at the hospital is looking to see what her rights are to her own records! Really!!!

My cousin is doing a workaround by calling her OBGYN and asking her to find out. She thinks the surgeon might get miffed. I think it is a stupid policy.

That would be a HIPPA violation. The surgeon could be fired over it. Things have changed A LOT. We have to have training and sign off on it every year, too, so you can't claim you didn't know. Unfortunately, she'll just have to wait. (I think looking up your own info is ok, though.)

Congrats to your son, lmp! I liked psych myself - planned to go into it, but changed paths and never did.

Laurie, glad your daughter's doing better.

Smiley, sorry to hear you've been having difficulty. It took me about 3 years for my mind to stop racing. (And I didn't lose a son.) It's good to stay distracted with home projects and trips like you are. I had my kids and work to keep me busy. Are you working?

We've had some crazy stuff going on here, plus it's baseball season. HS is winding down, but two other teams starting in a week or two. Poor DS had to have his appendix out last week, but just got the ok to play again - raring to go.

 

[Feralpeg]

Are you still feeling ok now? Taxol is different than A/C, but can be hard for a lot of people. I found it very difficult. Maybe they've found something that helps it now. I could barely walk at one point for 36 hrs. Our co-founder here (laurabelle) used to just sit in the tub, lol. Let us know.

I'm still feeling pretty good. The only problem I'm having now is some pain in my neck. I think it has to do with my port. I'll check with them when I go in for my next infusion on Tuesday. I know they said that Taxol can be irritating.

Glad things are going well for everyone! Thinking of you!

 

[snappy]

Pea n me, sorry to hear your son had his appendix out. That must have been a story! Amazing that he is ready to play baseball already! I know you love this time of year!

Hooray for summer! DD17 has her last exams on next Monday and Tuesday. Then she has an interview for a volunteer position at the zoo. And then we are off to Disney!

Thanks for your input about my cousin. I had not thought about HIPPA. Ends up she got good news-no cancer.

I was so glad, her DD graduated today from my DD22's alma mater-Tulane. It would have been difficult to get through today if the news had been different. She had a good bit of pain from the biopsy.

DD22 sounds like she is living it up during her recuperation period. Movies, eating out, resting alot, etc. She will see the neurologist again before she goes back to work. By then the second anti seizure medicine should be titrated to the full dosage but she will need to have another blood test to check everything out, probably another ambulatory EEG as well. Thank God for insurance.

DS24's employer in New Orleans had to let hime got as he lost customers and just couldn't pay him (his recent paychecks have even bounced!). DS 24 has been visiting us for about a week and decided to look for a job here. He was hired Thursday and starts Monday! This company is much bigger and more established. He will be getting a lot of training. He is thrilled and we are glad he will be back living at home until he saves some money. Of course he signed a lease down in NOLA last December, but the rent is very low so its not too concerning if he can't break the lease. We do need to drag his bike, his bed, and his table back up here. Oh well, that is a minor blip in the big scheme.

I am having fun buying new clothes for my new size. I am still phasing off my diet (will be eating carbs at least for breakfast starting Thursday), but I think my size and weight have stabilized at this point. I still feel great, I do think giving up most carbs is responsible. Now, even the clothes I bought back in February for our big family trip to NYC are mostly too big. I have been haunting the sales Chico's and TJ Maxx. Amazing the nice stuff they have even for little old ladies like me!!!

Maintaining the weight loss I expect to be challenging but I am determined to eat better, continue to work out. For me at this point the most crucial thing is controlling the cholesterol. I have my visit with the doc who recommended this diet in about a month. I sure hope it has dropped from 269, my number last December!

GAGWTA!

 

[luvmarypoppins]

Linda - sorry to hear your ds had to have surgery, but happy to hear he is back to playing baseball.

Smiley - sorry you are dealing with the depression and sleep issues. I hope the meds work and will help you sleep and feel better. One day at a time sista. Hang in there!

Peg - how wonderful that you were able to go to dtd. Sounds like the new med is bearable.

Laurie - glad to hear your cousin had good results. I am glad your ds has a job. I know its so hard with this economy for sure.

My heart goes out to those in OK. I was thinking of Melissa. Its no fun being in the tornado ladies. I had to stay with the 3 ds in the tornado closet. Our house was 2 blocks from I35, known as Tornado Alley. Of course us northern yankees didnt know that when we rented the place, but at least it came with a tornado closet. Our town center and library suffered over l million dollars damage from one tornado. Its scary beyond words. We just huddled and I prayed and tried to stay calm for the kids sake, oh course dh had moved back to NY then and I was alone in TX with the 3 ds

I am so ready for dh to come home tomm. Its been a long 11 days I have had enough of the ds. Too much testosterone around here. I need a vacation. Just need to book the wheelchair and town car tomm. I also have my school meeting tomm.

Got a letter from the oncologist today verifying my visit for the appt which I cancelled. Hmm, Guess they will be on my to do and call list tomm too. Wish they would get things right Hope its just an oversight because I dont want to reschedule again as they gave me the end of July when I called etc.

GAGWTA

 

[luvmarypoppins]

Well I just made the town car and wheelchair reservations, so our trip is around the corner oh and its here today, so I am gonna enjoy it as its going to rain the next few days I think, sigh. I am starting to think we live in a rain forest.

Remember I told you about the teen girl C. that I taught once with the brain tumor. She just had an mri yest. They told her mom the tumor has increased. I know her mom has been in contact with St. Judes and Sloan Kettering.

I think she is going to meet with another dr. wed. I know they wanted to wait and see and it doesnt look like things are going well. So I guess chemo and radiation are a real possibility now. Both St. Judes and Sloan said wait and watch at first. She also has her on a vegetarian/no sugar/no carb diet and sadly she is seeing that is ineffective etc. My heart breaks for this family, so please say a pray for this sweet young lady C. Thanks.

 

[Sha]

GAGWTA ~ Good morning ladies! LONG time since I posted and have NO clue when that even was. Things have just been busy in general. I scrolled through about 5 pages of posts... several new posters (HI!!) and couldn't tell you a lot of what I read through. I'm home sick today with a cold.

Mom is good... had a couple falls a month apart with a bump to head. The first one was in the street and 2 cars evidently went by and the second on actually stopped (turned around and came back). I told her that her walker is no longer optional. Going to get some home health PT when she has her MD appointment but now thinking I may call to start it sooner.

My sister has been doing travel nursing and is on her third contract locally which helps for some things. Been hard though as her weekends off and she being away those weekends took away from me being able to see R.

He and I are doing well... miss him horribly though as its been 3 months since I saw him last. That was at WDW when I did the 5k on Princess Marathon weekend. We were suppose to see each other in 2 weeks but that is cancelled since he has things to do at house and then I am in NOLA to celebrate my 45th Birthday. (Laurie, I'm not sure I will get to BR during that trip). I am arriving on a Thursday and staying through to Sunday or Monday depending on a few things.

Laurie and MaryAnn-- since I am not going away with R to Ft Walton, what dates are you at WDW? May need a day away for myself. Text me might be faster as I am not sure when I will be back on here.

Melanie.... R's cousin... had a short time with clean margins and a good outcome with her last surgery. Found out of Friday it's back... I am just heartbroken about it. Its now also on her back. No more surgery per UK docs and chemo will keep it controlled. Not sure if she will come to States for another opinion. She hasn't given up hope and there is something she is sure for her to stop this. Please keep her in thoughts and prayers. IBC is a monster! I hate this one I think more than all the others because of the aggressiveness and no tumor... I'm still learning a lot about it.

I have been getting a lot of Breast cancer patients lately. I am going to look into learning how to do lymphedema therapy in the next few months. Will be useful for patients who have other issues too.

I was going to do a walk in NYC for Susan G but since R can't make it and I do not want to go alone... I am planning elsewhere. Looking at Bloomington/Normal, IL.... Jacksonville or Charleston. Bloomington I cant fly in on SW... Charleston I can include time at Hilton Head think that one may win now.

 

[Feralpeg]

Prayers said for the teen girl with the brain tumor and the lady with IBC. So much suffering out there.

Getting excited for those of you with the WDW trips planned. After making a couple of trips to DTD recently, I am definitely back in the WDW mood. I am so happy that you will be enjoying the parks soon!

Went for my second Taxol infusion today. I also saw the doctor. I guess I didn't understand the process. Originally, he told me that I would have eight chemo sessions. The first four were the Andromycin and Cytoxin. Then, I started the Taxol. I assumed I'd have four of those. Today, I found out that I will have twelve Taxol sessions. So, instead of two, I have ten left. Not so bad since the Taxol seems to be much easier to tolerate. I was just hoping to have it done. Now, I will have my last chemo on July 30.

Feeling good. I can't complain. I feel so lucky.

Thinking of you all!

 

[luvmarypoppins]

Sha - I will text you

Peggy - sorry you have to have the additional chemo. I am sure it wasnt the greatest having to hear that, but you have a great attitude and I am sure Kendall is a great support too. Hang in there! Will you be feeling well enough for a meet up? Let us know. I can pm you my cell phone number.

Pats Mom -thinking of you and hoping your testing has good results

Well dh is home, hooray. We went out to dinner last night. I had a special dish of the night. Note to self" - dont get fettucine with gorgonzola cheese sauce, yuck!

Dh gave me a necklace for my b day or anniv. dont know which. This was after I kindly asked him not to get me anymore jewelry. Oh yeah, nothing says love like wearing some 10 pound clunker around your dissected neck. It actually felt like when I was dying a little but not so bad. Felt like it was choking me, probably from the weight. I wore it but took it off. Told dh thanks but I didnt like it and I wish he would have respected my wishes. Hmm. Laurie your dh and mine need to have a gift giving talk.

Ds3 and ds2, really ds 3 idea got us this really neat engraved photo frame. Its silver and looks like cinderellas carriage, its not from disney.

Ds1 gave me 6 boxes of chocolate. sigh, sigh. And not to be outdone, dh then gives me 2 boxes of chocolate. Oh yeah, 8 boxes of chocolate, barf!

I think I will cut out pictures and make a collage and put it on the refrig and label it - Things I would like etc. Do you think that might work??

And then when I thought it couldnt get any worse dh cousin called. We decided not to take that call and ruin the rest of the night. I am sure that is about the property and will go no where as usual.

GAGWTA - Thinking of you all

 

[Feralpeg]

Sha - I will text you

Peggy - sorry you have to have the additional chemo. I am sure it wasnt the greatest having to hear that, but you have a great attitude and I am sure Kendall is a great support too. Hang in there! Will you be feeling well enough for a meet up? Let us know. I can pm you my cell phone number.

Pats Mom -thinking of you and hoping your testing has good results

Well dh is home, hooray. We went out to dinner last night. I had a special dish of the night. Note to self" - dont get fettucine with gorgonzola cheese sauce, yuck!

Dh gave me a necklace for my b day or anniv. dont know which. This was after I kindly asked him not to get me anymore jewelry. Oh yeah, nothing says love like wearing some 10 pound clunker around your dissected neck. It actually felt like when I was dying a little but not so bad. Felt like it was choking me, probably from the weight. I wore it but took it off. Told dh thanks but I didnt like it and I wish he would have respected my wishes. Hmm. Laurie your dh and mine need to have a gift giving talk.

Ds3 and ds2, really ds 3 idea got us this really neat engraved photo frame. Its silver and looks like cinderellas carriage, its not from disney.

Ds1 gave me 6 boxes of chocolate. sigh, sigh. And not to be outdone, dh then gives me 2 boxes of chocolate. Oh yeah, 8 boxes of chocolate, barf!

I think I will cut out pictures and make a collage and put it on the refrig and label it - Things I would like etc. Do you think that might work??

And then when I thought it couldnt get any worse dh cousin called. We decided not to take that call and ruin the rest of the night. I am sure that is about the property and will go no where as usual.

GAGWTA - Thinking of you all

Sounds like a very interesting birthday! lol!

When you get a chance, PM me your cell number and the dates you'll be here. If things continue to go well, I'd love to see you!

 

[Dancind]

Dancind.....you are in my favorite part of the world!! If we could move there we would! Been to Hearst Castle 3 times now for the different tours, Love it!! the Farmers market in SLO is on my list for next trip and I have an Inn picked out to stay at in Paso Robles! There are some guided park tours you can do in Morro Bay! some are free but there is a kayaking trip I want to do, it is in late afternoon, you have dinner on the beach then kayak back at sunset

We got back really late Tuesday, our return flight got canceled. Never had that happen on Southwest before. It was a really nice trip, didn't overdo it this time. Sort of go with the flow. We did do Hearst Castle, and May is great for elephant seals at the rookery. Cambria, of course, all the beach cities along the coast there. Spent a little time in Solvang, actually liked their small farmer's market better than the SLO one. Ate some really excellent meals and a couple of weird ones, and tried some really good wine. California could really use some of the rain some of you are getting. The best part may have been coffee every morning on the deck of our "beach cottage", overlooking Morro Bay. Was not brave enough to try kayaking, the water was cold!

Smiley, hope you are feeling better. I do that too, lying awake just worrying. 3g melatonin has helped me, also using oxygen at night. Not sleeping is horrible.

LMP, hope some of the chocolate is to your liking. I guess you can freeze it. My 60th was this month, and our 25th (hence the trip). DH got me a new iMac, that's a pretty good gift! He used to buy me jewelry but I don't wear much either. I do still like antique rings.

Peg, sorry to hear about the extra unexpected chemo. But glad this one is easier on you.

Snappy, congrats on the weight loss. I did this a few years ago and have maintained. One thing that helped is only allowing myself to eat starchy carbs (bread, sweets) on trips, especially WDW. The walking balanced it out. Until I realized that the bread etc were making me blow up and causing my hips to hurt so bad I couldn't walk. Hopefully you won't have any problems.

So, a friend gave me a Calla Lily plant right before we left for my birthday. Turns out they are kind of toxic for cats, didn't know that. Of course, fat guy sampled some but he threw up right away and seems to be ok.

Back to reality. It's rough.

 

[luvmarypoppins]

Diana - sounds like you had an awesome trip and then a great birthday present too! Happy Birthday!!

Peg - sent you a pm

Well the week end weather forecast here is fri,sat and sun - rain rain and then Monday - a high of 68 degrees and we will get lower.

I am so ready for sun and vacation!

They had to cancel the yard sale again at the school so more time for ds and I to do garage cleaning. I think we have another box of stuff. It never ends.

Will try to check in when we are there.

 

[snappy]

Dancind, your trip sounds so relaxing and easy paced-not what I am getting ready to do, lol.

but. . . it screams for pictures! Can you post some?

Peg I think I sent you my cell phone via pm.

I hope we are able to have a nice little meet up or several next week.

GAGWTA!

 

[Dancind]

Dancind, your trip sounds so relaxing and easy paced-not what I am getting ready to do, lol.

but. . . it screams for pictures! Can you post some?



GAGWTA!

Will see what I can do. DH is a good photog, but I haven't posted photos on the DIS in ages.

 

[snappy]

I have pretty good luck with photobucket.

 

[luvmarypoppins]

Peg - I sent you my cell phone # in a pm too

It is so cold, rainy and yucky here. The heat is on and I am probably going to sleep with my winter pj's. What is wrong with that? Where is summer???

It was the official pool opening day for ds. Yeah, of course that didnt happen. He goes on tues, so we will see what happens.

Dh said the wheelchair company called and asked where we were. He forgot to tell me this of course. apparently they have the wrong dates. I looked at my confirmation and it has the correct dates. Hmm. Never had a problem with them before.

Well I even have one of my fall shirts on its so cold here. I will start the packing organization tom. maybe. Mon. if I am lazy.

Hopefully Laurie, Sha, Peg, Pats Mom and I will all or partially meet up during the next week.

GAGWTA.

 

[snappy]

Not cold here for sure, although the mornings are nice and low humidity, the days are hot hot hot.

And it looks nice in ORlando so that is good news.

I hope the wheelchair company gets their act together.Don't overdo working in the garage, Maryann. Save your energy for packing and your vacation.

DD17 has had a cold since Thursday so I am a bit nervous. She wants to go see a doc on Memorial day weekend? Really? Not much they can do about a cold. No fever. She may get a sinus infection but it is not there yet. Her friends are coming over tonight and we are supposed to leave in the car in the morning.

Probably good we are not flying as she is still congested.

I am very organized for the trip we could probably leave today.

Guess I need a vacation or something.

DS24 finished his first week at his new job here. Working for an established company is making a difference in his mood, although he certainly works hard and long hours, at least he knows he will be paid. Always a good thing, lol.

Dh got out and pressured washed my back patio to get all the mildew off the cement and the bricks. Looks nice! I need a new table and chairs out there. We did buy a set of 2 nice teak chairs a few months ago. Nice place to sit having my tea, at least in the morning.

GAGWTA!

 

[Feralpeg]

Laurie and Maryann, We have some nice warm weather on hand for your visits! The weather today is beautiful. It's in the mid-80s with low humidity.

Unfortunately, I still managed to catch a cold. It could just be a sinus thing. Everything is blooming. Hopefully, it will pass soon.

I'll try to keep the nice weather going for you!

 

[Pea-n-Me]

Went for my second Taxol infusion today. I also saw the doctor. I guess I didn't understand the process. Originally, he told me that I would have eight chemo sessions. The first four were the Andromycin and Cytoxin. Then, I started the Taxol. I assumed I'd have four of those. Today, I found out that I will have twelve Taxol sessions. So, instead of two, I have ten left. Not so bad since the Taxol seems to be much easier to tolerate. I was just hoping to have it done. Now, I will have my last chemo on July 30.

Feeling good. I can't complain. I feel so lucky.

They changed the way they give taxol since I had it. This is apparently a good thing if it lessens the difficult symptoms from it. I think you get the same amount altogether, but in smaller doses more spread out. That's good. I'm glad you're feeling well with it.

 

[Theta]

My best friend has just been diagnosed with breast cancer that has spread to her bones. She had a lumpectomy last month and they removed a very small lump (not seen on last year's mammogram) and it tested positive.

He main complaint over the past 6 months was pain in her back, arm and chest. As it turns out her bones are riddled with multiple lytic lesions.

She is seeing an oncologist in our small town, but I have not been impressed with some of the advice he has given her regarding food. He is telling her to eat high calorie foods every hour. He mentioned Haagen Daaz (sp) ice cream and other high empty calorie foods. She is severely constipated and has no appetite.

I have a few questions.

1. I would think the quality of food is of utmost importance. Correct?

2. Could someone recommend something to help with constipation.

3. I really think she needs to go to a renowned cancer center because I question the diagnosis and treatment plan. She was satisfied with things at first, but this morning she expressed concerned with the doctor and she "doesn't like" him anymore.

4. We are in North Carolina. Is Duke the best place to go? Will she need a referral?