Dis Breast Cancer Survivors Part II -GAGWTA!

[snappy]

Lmp, Edward Scissorhands, what an image!!

I just saw that movie again, it was a classic!1

Oh my, it was 80 at 6 am today with 85 percent humidity.
I am with Sha, we are watching the tropical wave in the gulf, hopefully it is nothing.

We really don't need that drama !.

My boss and our main bingo caller, and I yesterday (great way to spend a Sunday, right?) all went together to a bingo at another hall. The bingo caller had to come over and help the three of us.

Bingo sure ain't what it used to be!!. There are all these wild balls, and making bingo with a postage stamps 4 together in two corners, and 6 in the corner, and 9 in the corner, and progressive blackout.

We are so not ready for this. We were planning on just doing 10 quick regular bingo games. The people who play are so intense. They are gonna laugh at us virgin bingo callers.

Like a bad dream.

not a tourist, the massage info I was given was more to treat a mastectomy scar but I am sure it applies to any scar. I would check with my doc before doing it on a vertical scar. You don't want to pull it apart any more that already happens but moving around too much.

You have to start slow with this if you do get clearance from the doc.

 

[Candy30]

Hi My Girls!

I had a busy weekend. I don't know If I can do this 2nd job. I was exhausted after working on Friday. My son had a chorus performance Saturday Morning. I had a hair appt which I was Sooooooooooooo looking forward too. I needed it done something fierce. I hate waiting until after chemo. It drives me bonkers when it looks a mess! Progressively lookbad until it is similar to this ! After my hair appt, we dropped off my daughter at a friends and my son to work and we went to a wedding that was very nice and fun. Sunday I did everything that I didn't do on Friday and Saturday and here I am back to Monday. I wish i was in my bed like this

Honugirl!!! Welcome back. I am glad you got to see some good sights. I would have loved to have seen the whale spouts and the eagle. I hope this new drug works out for you as best it can.

LMP- You son is awesome! He will get through it and I know you will but keep and eye on him. My son was 11 when he tried to do CPR on his Uncle who passed. We watched him closely and he seemed to be fine. It wasn't until about 6 months later that he broke down. Glad you found the sun and a rainbow.

Sha- I think I will pass on the blood pudding. Thanks for checking with your MD for me.

Jackskell, Alice, Nota

GAGWTA

 

[luvmarypoppins]

Good afternoon sistas

Honugirl - Hope this med does what you want it to do.

Laurie - Maybe all your co workers can do a little practice bingo at lunch? Hmm, throw in some snacks for prizes

Candy - Sounds like you had a busy but good week end. Glad to hear you got a nice hairstyle.

Well I called the dentist to make an appt. I figured I better get it done because who knows what is happening next. and I think I was there like in sept? I dont remember. Well he was on the phone and kept saying what? what? etc. Oh, there goes the voice again. It makes me sad. I guess this is a bad voice day. He did say, um I heard you were having some problems. I could tell he was watching his words. I didnt even tell them anything. We are way overdue for visits and I didnt even call but I think some guy at my church who goes there must have told him etc. I dont mind but I just wonder what exactly did he tell him etc. We will see on wed. when I go. Heah, a girl has to have nice looking shiny teeth when they shove that breathing tube down ya right? Not to mention they can see em when I scream in pain too

GTAGWTA. Blessings to you all, Have a great day.

 

[Notatourist]

Hey there...

Had a bought with chemo brain this am. Had the id, had the insurance card...thought the blood test orders were in the binder I got from the american cancer society...

They were at home. Thankfully the office was open and they faxed the test needs..Now I wait to find out my CA 125 for this round...


And thanks to all of you for the suggestions on the scar pain. I am just going to tough it out, aleve when it gets bad, perc when it gets worse.

You all have a great night!

 

[Candy30]

Just checking in on everyone. Glad you were able to get that script Nota! I really hate drug stores. They can be so irritating.

GAGWTA!

 

[luvmarypoppins]

Good evening sistas!!

Nta - I hope you get good test results. I always hate the waiting part.

It was a quiet day here today. Ds17 kissed me goodbye when he got out at the pool. Hmm, he is definetely not the hugging and kissing mom type, I think it was a little flashback of all the cpr stuff etc. and wanting some reassurance etc.

So what do you all think about the FDA thinking of banning Vicodin and Percocet? Hmm, what would I ever do? I sure don't want to be suffering in pain. I certainly hope they rethink this.

Well I will report on my little dental adventure tomm. Hmm, should be interesting. I don't know what he will or will not be able to do.

GTAGWTA. Blessings to you all.

 

[Sha]

Good evening sistas!!

Nta - I hope you get good test results. I always hate the waiting part.

It was a quiet day here today. Ds17 kissed me goodbye when he got out at the pool. Hmm, he is definetely not the hugging and kissing mom type, I think it was a little flashback of all the cpr stuff etc. and wanting some reassurance etc.

So what do you all think about the FDA thinking of banning Vicodin and Percocet? Hmm, what would I ever do? I sure don't want to be suffering in pain. I certainly hope they rethink this.

Well I will report on my little dental adventure tomm. Hmm, should be interesting. I don't know what he will or will not be able to do.

GTAGWTA. Blessings to you all.

I wish they would try the black lable first...

Candy.. talked to my massage therapist before she beat me (literally, will come back to that). She said that yes, some cancers can be spread that way because of the circulatory and lymphatic systems... but, if your MD has approved it or you are in a remission, then that should be okay because you would benefit. Like my mom, who had a mastectomy, she gets lymphedema therapy done every 2 weeks.

I never complain much or at all to Sally when she does my massage... but OMG! The other therapist heard me saying OWWWw! and so forth (no cussing but did say bloody hell). I was in tears at times and other times, had the odd lol because it was intense. Okay.. lol though pain! I felt a little better each time it happened. Am wiped out and on my 4th large bottle of water to flush out these toxins!

 

[luvmarypoppins]

Good afternoon sistas

Its cloudy/almost raining here. This weather is daily basically and starting to get old really fast around here.

Sha - Ouch!! I thought something that is suppose to make you feel better wouldnt hurt so much??

I survived the dentist. He said a lady told him about me. Um, no one knows I even go there except for that guy from my church. He said I didnt know wether to call you, etc. He did say, and does anyone elses dentist say this, that usually after radiation and chemo your teeth have a more higher tendency for cavities etc. ??

DH has the next 2 days off hooray and of course rain is predicted as usual.

GTAGWTA. Have a great day. Blessings to you all.

 

[Sha]

Good afternoon sistas

Its cloudy/almost raining here. This weather is daily basically and starting to get old really fast around here.

Sha - Ouch!! I thought something that is suppose to make you feel better wouldnt hurt so much??

I survived the dentist. He said a lady told him about me. Um, no one knows I even go there except for that guy from my church. He said I didnt know wether to call you, etc. He did say, and does anyone elses dentist say this, that usually after radiation and chemo your teeth have a more higher tendency for cavities etc. ??

DH has the next 2 days off hooray and of course rain is predicted as usual.

GTAGWTA. Have a great day. Blessings to you all.

Yes, you would think... but considering yesterday morning before I saw her, I was having trouble moving my neck because I was so stiff and drawn in feeling and that today, I am just sore to my chest at my shoulders and to my shoulder blades. Where she was trying to get stuff moving again. All that congestion was there... and my body wasnt moving nothing! Also, she did my chakras and took 2 times to reset them!

 

[Candy30]

Yes, you would think... but considering yesterday morning before I saw her, I was having trouble moving my neck because I was so stiff and drawn in feeling and that today, I am just sore to my chest at my shoulders and to my shoulder blades. Where she was trying to get stuff moving again. All that congestion was there... and my body wasnt moving nothing! Also, she did my chakras and took 2 times to reset them!

That sounds painful Sha! Does it help you at times? Thanks for getting that information from your MD.

LMP - I have had so many dental problems since chemo that I am sure I put my dentist, her children and her grandchildren through college. I have had 6 root canals in 2 years and 2 of them redone!! I am taking vitamin D dailiy and a high dosage weekly. Now I am down to just 1 root canal a year!

I have been exhausted lately. That 2nd job I don't think I am going to last on it. I am trying though. Yesterday after work someone took my mirror off of my new car and the dealer says it will cost $189 to replace it. It wasn't hit or anything because there was no glass. The guy I talked to at the dealership said that I was his 3rd call about a missing mirror that week. Who knows? I just know I can afford it right now.

I hope everyone is doing well! Honu girl, MP, NOTA, Jacks, Snappy and anyone else I forgot. GAGTWA

 

[luvmarypoppins]

Good afternoon sistas

Candy - wow, that stinks about the mirror. I guess car parts are a very lucrative business , especially after what the dealer told you.

I forgot to say that the dentist also told me to rinse with act with flouride every day to help prevent the cavities and tooth stuff too. Anyone else do something like this?

O.K. I am officially awarding myself the stupid sista of the day award. I was sitting out getting some sun before. Thinking this is good for my vitamin D deficiency and I am watching the blue jay in our plum tree and its been awile and I look down and see that my L arm is red and blotchy. Not hurting. Just looks bad. I go inside and read the pill bottle...yup I forgot that while taking the lovely cipro I am not suppose to be in the sun, o.k. lesson learned. My last 2 doses of that is tomm anyway. I will give you my pre op update tomm. after its over.

GTAGWTA. Have a great day. Blessings to you all.

 

[Aliceacc]

Hi all.

Sorry, summer school has kept me busy. But I'm making time for a vent



In mid May I had a biopsy on the goiter on my thyroid. The endocrinologist wanted half my thyroid out. So I called my surgeon, made an appointment for 2 weeks later, and had the biopsy results faxed over the next day.

Two weeks later, right before the appointment, they call and tell me they don't do thyroid surgery. Two weeks shot. But they gave me the name of an Ear Nose Throat doctor who does that type of surgery, and he got me in that Saturday, the Saturday of Memorial Day weekend.

He agreed that the surgery should be done. It took a few phone calls, but on June 11 I got the surgery set up for August 18. (Coincidentally that was the same day that I managed to get the other surgery, the reconstruction, booked for July 8. Tomorrow is both the pre-op clearance and the surgical clearance appointments.)
They sent me a letter, currently on my fridge, dated June 14, confirming that date and the date for a pre-op appointment with the ENT doctor.

So yesterday his office called at 4:30 pm, confirming surgery for July 28. Nope, I say, I'm going to Disney on August 5. $1000 in airline tickets are non-refundable. My surgery is August 18. She sounds a bit confused and says she'll call back.

She does, 20 minutes later, as we're getting the kids in the car. Sorry, Alice, we made a mistake. The doctors will both be on vacation on Aug 18. How does September sound??

ARE YOU KIDDING????

I have a letter FROM YOUR OFFICE verifying the date of the surgery. I'm a teacher-- September sounds pretty crappy. I have Two months off and I had this all set up. And I'm supposed to let you people operate on me????When you can't manage a date book????? (OK, I know the surgeon is not the one who screwed this up. But it doesn't lend confidence.)

She knew I was pretty upset.. I managed to mention that next week I was having the surgery for breast cancer.

She called back while we were out, saying she can get me in on September 1st. It's not ideal, but thanks to a late Labor Day, it's before classes begin. I will miss Freshman Orientation. But it looks like the best I'm going to get.

I am NOT a happy patient at the moment!!!!

In other news, today was the pre-op testing for next Wednesday's reconstruction surgery. So I'm good to go. This time next week I'll have a matched set.

 

[MerryPoppins]

LMP, your son sounds like an amazing, caring young man. I hope he's feeling better now. He did all that he could do to save that man.

Alice, that sucks. I don't blame you for being upset. Glad they were able to juggle it to a little better time for you.

I've been away for several days. Our church has a youth retreat called Happening. It's for senior high kids and it's very spiritual. I was "mom" to about 25 young people for a few days. It's lots of responsibility, but I love it. We have a healing service the last night. This time we had it outdoors in the starlight with just a couple of candles. The sky was full of stars and in the middle of the service we had tons of shooting stars in the area of the Northern Cross that gave me goosebumps. We could also see the stars reflected in the lake and fireflies were all around us. The setting was breathtaking.

I'm telling you this because at that healing service anyone can go forward. The entire group comes up and lays hands on you as the priest prays for your concern. It's very powerful to have all those people adding their prayers by touching you. I went forward and told them I was a member of a group of women with cancer. I wanted to offer all of you up in prayer. So they prayed for all of you. That you would find healing, comfort, calm and that your worries would be eased. It was very powerful. I just wanted to let you all know that you'd been included.

 

[snappy]

LMP, your son sounds like an amazing, caring young man. I hope he's feeling better now. He did all that he could do to save that man.

Alice, that sucks. I don't blame you for being upset. Glad they were able to juggle it to a little better time for you.

I've been away for several days. Our church has a youth retreat called Happening. It's for senior high kids and it's very spiritual. I was "mom" to about 25 young people for a few days. It's lots of responsibility, but I love it. We have a healing service the last night. This time we had it outdoors in the starlight with just a couple of candles. The sky was full of stars and in the middle of the service we had tons of shooting stars in the area of the Northern Cross that gave me goosebumps. We could also see the stars reflected in the lake and fireflies were all around us. The setting was breathtaking.

I'm telling you this because at that healing service anyone can go forward. The entire group comes up and lays hands on you as the priest prays for your concern. It's very powerful to have all those people adding their prayers by touching you. I went forward and told them I was a member of a group of women with cancer. I wanted to offer all of you up in prayer. So they prayed for all of you. That you would find healing, comfort, calm and that your worries would be eased. It was very powerful. I just wanted to let you all know that you'd been included.

Merry, that is beautiful, I am in tears over your beautifu story and including us at the heart of it.

I can't put what I feel in words here, but I am very touched.

Alice, I agree with what Merry posted, you should be assertive here. There is really no excuse for such shoddy scheduling. How hard could it be on their part? Nothing like that ever happened to my mom or me with our surgeries in the past 5 years, despite having to get the hospital, breast surgeon and plastic all schedule. The patient does not get to run the show, but once it is in place, you are owed a better explanation than just, oh the doctors are on vacation that day.

They should give you a full explanation of this, sorry but I would insist.

 

[Sha]

Good evening ladies!

Merry... that Healing prayer sounds like an awesome experience! Very moving to hear something like that for these incredible women on here!

Candy, the massage normally doesnt hurt me, especially when I go on a regular basis. I also had been a bit dehydrated so am sure that had a lot to do with it. Normally its just a little tender etc. I expect that there will be more to work out of me when I go back on the 14th. LOL

Oh.. and that is just weird about the mirror... 3rd one in a week? Wonder if it is for parts or just some kids being bad? Will never know.

LMP.. been where you are... unless it was an allergic reaction I had.. but Benedryl is also photosensitive.

Aliceacc.............. I am sorry that you had to deal with that crap. That to me isn't a good example of a surgeon's office. I would call them tomorrow and ask to get a call when another opening comes up after your trip to WDW and your other surgery. So that way you can hopefully have it done before Sept 1st. It's the least they can do (in my opinion).

 

[NHAnn]

GAGWTA!

Still "sharing" computers here...took mine to Best Buy today, bought an external hard drive (which I should have done long ago) and hopefully they can get my pictures onto it.

Someone asked about my "dress dilemma" for stepson's wedding--here is the one I chose after I had it hemmed a little and fitted better through the hips. This was taken in my sister's backyard, she lives about 2 miles from where the wedding/reception were held at Odiorne Point in Rye, NH:

Still waiting for my "fish" pictures from Casting for Recovery. Linda, the retreat was way up in Pittsburg NH near the Canadian border. The Massachusetts one is in Wareham I believe. My brother from Colorado is a fly fisherman, he and his wife are out for a visit and we've spent some time with them this week. In the course of advising me on buying beginner gear, he's decided he might volunteer as an instructor for CfR in Colorado snappy, you should check if they have one in Louisiana...I know you would love it!!


DH and I are both off this week, and haven't seen the sun for about a week prior to that...but we're enjoying a week at home catching up on stuff here together.

Any word from Laurabelle?

Sending you all my good wishes!!

 

[honugirl]

GAGWTA everyone!

Merry, thanks for the prayers at that thing. It sounds really cool.

To everyone dealing with craziness around doctors and scheduling. I know how that goes... I wanted my original surgery scheduled for a certain week. I get a call back saying my surgeon is out of town that week, so we'd have to do it the week after. Then I find out someone else I know ended up getting surgery scheduled for the week that I originally wanted. Maybe it was because I refused to have my surgery done on a Friday, I wanted the Wednesday time. Who knows, but doctor's offices are strange places...

So my current dilemma is this...

The surgeon I want to use for surgery #2 if I chose a bilateral adrenalectomy is right across the river, 20 minutes from my house. My family could come visit me as well as my friends. My dogs wouldn't have to be kenneled. My parents could go home to rest. It would be perfect.

I can't use him.

He won't accept a diagnosis of Cushing's from someone outside OHSU. So I either would have to get into their pituitary unit, which I really don't want to do 'cause I haven't heard very good things about their docs in relation to Cushing's and the only one that's good, isn't taking new patients, and I would have to go back to step 1 and completely redo all my testing which would inevitably delay surgery for quite awhile.

He's a good doctor.

My other choices are Wisconsin, LA, or San Francisco. I really didn't want to travel if I didn't have to.

Any ideas?

Thanks!

 

[Sha]

Ann!!! You look so beautiful there!!! I think you made a great choice including the alterations. Very Classic looking!

 

[luvmarypoppins]

Good afternoon sistas

Ann - the dress looks beautiful

Merry - Thank you so much for your inclusion of me and all the sistas in the healing prayer. That was so touching to my heart and spirit.

Alice - I hear ya sista!! I always let my dh deal with my current surgeons scheduler. This time I saw he (the dr.) actually sat with her while I was there. I am always squeezed in somewhere, so the surgery is always late, late in the afternoon and I feel like they are always tired and rushed with me. Sigh, sigh. I actually sat with ds surgery scheduer too and she was amazing. Wow, dont these people realize this is YOUR life they are dealing with. Obviously, they just think we are a name on a paper on some surgical spread sheet calendar etc. Gheesh!! Guess what I saw last night, Grucci fireworks!!
Praying your surgery goes well. I too would call and tell then to put you on the standby list if someone cancels sometime. Give them your available dates etc. Hang in there!! Hmm, maybe you could do a probability math analysis of your situation

Honugirl - Can any of your other doctors advocate for you with the surgeon who is not taking new patients? Are the not so good things you hear about the doctors really bad things that would affect your care or treatment? If so, I would be leary too. I will pray this will work out for you.

As I told Alice dh and I saw fireworks last night. We were picking up ds from a minor league baseball game (LI Ducks - Alice- have you ever been there?), He had to do concessions for a school fundraise r for his senior class trip to Disney in May. Well it wasnt Wishes, but it sure was pretty.

The pre op went o.k. Dh and I both really ddint like the np we had. She was asking about dh different last name, um, what business of hers is dh nationality etc. Then she argues with me that I am not 5'8. Gheesh, then measure me lady. Then she did weight me, no more weight loss, hooray. Blood tests, ekg etc. and talking to the anesthesia guy. He was strange too. Of course everyone says, you have been through alot etc. I told him yes, a]and people have been praying for me etc. He looks at me like I am an alien from another planet. This hospital is so politically correct it makes me want to puke at times. There is no compassion there whatsoever, no where. I actually think I found 1 nurse in the hosp. and of course my favorite np at the 2 surgeons. Today I saw the pre op np whom we have seen alot in the hall. She couldnt believe I was here again either. This hospital is totally efficient, but that is it. Ds met a nurse from the hosp. at the pool and she said she quit because she couldnt stand the attitude of everyone either. She is applying to another local hosp. instead. So its not just me who feels this way.
Enough of my rambling. GTAGWTA, Have a great day. Blessings to you all.

 

[honugirl]

You're gorgeous!!!!!!! I love the dress.


Still waiting for my "fish" pictures from Casting for Recovery. Linda, the retreat was way up in Pittsburg NH near the Canadian border. The Massachusetts one is in Wareham I believe. My brother from Colorado is a fly fisherman, he and his wife are out for a visit and we've spent some time with them this week. In the course of advising me on buying beginner gear, he's decided he might volunteer as an instructor for CfR in Colorado snappy, you should check if they have one in Louisiana...I know you would love it!!

Can't wait to see the pics. I love fishing.

Honugirl - Can any of your other doctors advocate for you with the surgeon who is not taking new patients? Are the not so good things you hear about the doctors really bad things that would affect your care or treatment? If so, I would be leary too. I will pray this will work out for you.

Thanks! The things I've heard about them is that they're really good with the "typical" pituitary problems: acromegaly, growth hormone deficiency, prolactinoma, etc., but they're not very good with my type. They don't understand it as well as my current doc does because more or less, that's all he does. He pretty much almost exclusively sees Cushing's patients. We call him the "wizard". The new docs would also be much more conservative. Translate: sit around feeling like crap until more tumor grows out of your pituitary and we can see it because the surgery you want is too radical. I'm not like that.

But I just talked to someone who used to work at OHSU and has been in my place, about what to do. She's trying to use the same surgeon I want for a similar option and could get a consult, so I'm going to call and ask for a consult and we'll sort out the endocrine stuff later. It's confusing, I know. Why couldn't I just get a "normal" tumor? I had to get the crazy one.

As I told Alice dh and I saw fireworks last night. We were picking up ds from a minor league baseball game (LI Ducks - Alice- have you ever been there?), He had to do concessions for a school fundraise r for his senior class trip to Disney in May. Well it wasnt Wishes, but it sure was pretty.

Yay for pretty fireworks!!!!! We're not having fireworks this year. Guess it was too expensive.

The pre op went o.k. Dh and I both really ddint like the np we had. She was asking about dh different last name, um, what business of hers is dh nationality etc. Then she argues with me that I am not 5'8. Gheesh, then measure me lady. Then she did weight me, no more weight loss, hooray. Blood tests, ekg etc. and talking to the anesthesia guy. He was strange too. Of course everyone says, you have been through alot etc. I told him yes, a]and people have been praying for me etc. He looks at me like I am an alien from another planet. This hospital is so politically correct it makes me want to puke at times. There is no compassion there whatsoever, no where. I actually think I found 1 nurse in the hosp. and of course my favorite np at the 2 surgeons. Today I saw the pre op np whom we have seen alot in the hall. She couldnt believe I was here again either. This hospital is totally efficient, but that is it. Ds met a nurse from the hosp. at the pool and she said she quit because she couldnt stand the attitude of everyone either. She is applying to another local hosp. instead. So its not just me who feels this way.
Enough of my rambling. GTAGWTA, Have a great day. Blessings to you all.