Dis Breast Cancer Survivors Part III - GAGWTA!

[luvmarypoppins]

Hello ladies

Sha - I hope your trip works out. Sounds like it would be exactly what you need to refresh yourself!!

Fl Lisa - sorry to hear about your cold. Hope you are feeling better soon.

O.K. I am having a moment, so I guess this is for Linda or Sha. I should stay off the internet in regard to looking things up, honestly I would if someone would just give me an Honest Answer. one bit of info I looked up yest says my rare cancer variant has...a very poor prognosis. I have asked the rad. onc. etc. I never get a straight answer other than its agressive and we will treat it agressively. I feel like I should know something more if I only have a limited time frame to work in etc . The endo mentioned once she feels it will come back in 3 years. I read on the tnernet the one case was 2 years and the only other case my endo had was 6 months. I will question surgeon 1 again next month...my question is....
just exactly what SHOULD I ask???

I called the rad. onc. today and got the rad. onc. run around. She says - oh didnt someone call you back. I said no. I said cant you just change the date etc? She said I really have to give the doctor the heads up lst. Hmm. thats nice, this is my life we are talking about. If I dont hear again within another weeks time I think I might try going with my endo calling them etc. I am getting frustrated.

Ds22 car is dead. He borroed my van and ds19 had to show him how to shift it since its automatic and the transmission is broken. We think its a dead battery. I am going to get my hair done tonight, yeah. I need that. I have to go there with my head wet because I cant put my neck back in the sink. She tried a water bottle but I dont like the sensation of that etc. Oh the joys of cancer!!

GTAGWTA. Thinking of you all.

 

[Pea-n-Me]

Come on, lmp, you know you should stay off the internet!

I share your curiosity and frustration - I wanted answers and assurances, too, and nobody - not nobody - could give them to me. And I guess the reason for that is that nobody really "knows" for sure (unless they have a crystal ball).

The one thing I will say is that, from what I see, the reading makes it seem worse than it is as you get all the "worst case scenarios" there. It is your doctor's job to know "the facts" about your disease and your individual case. Let them deal with it (and save you the worry). Part of their wisdom is that they also see many things that aren't textbook, so they're hesitant to give out "probablies" (and yes, I meant that as probablies as opposed to probabilities; the former, an opinion, the latter, the facts of the disease, but who knows whether they'll pertain to you or not). Sometimes people expected to do well don't; and people expected not to, do. So how do you predict that? There's no way, really.

It wouldn't have been my choice, because I'm a fact seeker and want to know what I'm dealing with even if it's bad news. But I had no choice but to go with the flow and, as my Onc put it, "Hope for the best". So that's what I did. Gradually, over the course of several years, the worry lessened and I didn't try to figure it out anymore. I just became grateful for every day that I had. So it's a process...

Hang in there. I know it's hard, but try not to worry too much about it. Your spirit tells me that you are a fighter and that you won't take anything less than a complete recovery. Speaking from experience, find some trashy novels to read instead of all this cancer stuff (for me, it became photography and decorating books).

 

[Pea-n-Me]

PS lmp, I don't know if I ever told you my "banker" story. It was a conversation I had with my Oncologist just after I finished all my treatment (surgery, chemo, radiation). I looked and felt like I got hit by a bus. And I was just trying to get on with my life. Emotionally, I was a wreck.

I had my list of "questions" for my oncologist in my first post treatment appt. One of them was Home Renovations? As I started to say it, I began to cry. She took the list out of my hands and said, "Home Renovations??? What's wrong, are you afraid you're going to die?" Through my tears, all I could muster was a nod yes. She said, with her characteristic dry sense of humor, "Well I'm not your banker, but if your banker says it's ok, then it's fine with me". I often thought about that and chuckled to myself because in some ways I felt like she "got it", but in some ways I felt like she didn't. But that's what I got, take it or leave it. She was right, of course. But here I was worried about finances long term and all those things that go along with life after a cancer diagnosis, and all she could give me was the banker thing. LOL.

I think it became more clear to me in a patient named Anne who I "shared" here with the group at the time. She was a lady who'd had cancer years before in both breasts and two separate mastectomy surgeries three weeks apart. She was a sweetie, and felt a kinship with me and even the ladies here that I told her about. Anyway, in the months after her cancer diagnosis and treatment, her company began downsizing. She was faced with taking a lump payment or regular payments over a lifetime. She wasn't sure what to do in light of her cancer diagnosis, clearly worried she might die. So she checked with her oncolgist (or maybe her surgeon, can't remember which), who, based on her diagnosis, advised her to take the lump sum (inferring she might not have long to live). So she did. Needless to say, years down the road it was a decision she came to regret. She advised me to make decisions based on the belief that I was going to LIVE, not the other way around, like she did. So with that, I did. And it was probably one of the best bits of advice I got. I only met her for such a short time, but she had a huge impact on my life without even realizing it, I'm sure. Funny how this sisterhood we have allows us to connect with the most amazing people, isn't it?

 

[wdw4us2]

LMP - I agree with Pea - stay off the internet! I told myself upon receiving my diagnosis the only internet cancer site I would go to was this thread. Every situation is different and if you begin reading all the info available on the internet you will drive yourself crazy. If you're not getting the responses you seek from your doctors explain it to them the way you explain in to us.

 

[Sha]

LMP- I ditto what Linda said.

I dont know if you can just ask them flat out... tell me something. This unsure stuff isnt cutting it and I need some answers. You pay them for it via insurance. And you dont understand the answer, tell them.

im glad i shared the story with you. I think it should be everywhere.

 

[snappy]

I will weigh in although I am not a nurse and I don't play one on tv either.

Your health record is your information. You can ask for a copy of it and ask if someone can walk you through everything. I would definitely do it in a matter of fact manner, explaining that you really want to be your own advocate as much as possible and participate in your care. They actually should be wanting you to have this attitude. I call it being informed.

Information is power, as Linda is a fact seeker, I call myself an information seeker. From what I can tell, doctors vary greatly in their ability to work with you rather than take care of you.

Personally, I don't need another father figure treating me as if I am unable to speak up.

I think that is why I like my colon rectal surgeon. . . he explained things in detail, how it could go, etc. As I asked questions, and he responded with a word for something that I could not understand, he wrote the word down for me so I could research it. He was as far from condescending in his attitude as you can get and he was not a youngish doctor.

I noticed the nurses I spoke to also like this guy. I think I was very fortunate that I was able to get in to see him 2 weeks ago.

I agree that it is important to know what you are up against. I think it is important for you to know more and to be able to share the info with your husband and your sons.

We care about you here. Don't be shy about questioning more. I do think it is important to be direct but calm when going about asking for more info. Since your cancer is rare, it is harder. With breast cancer there are lots of survival tables since there has been so much research. But as Linda said there are many that beat the odds by a mile and others that aren't as fortunate as the statistics indicate.

Let us know how this goes. Can your husband help you with it?

 

[snappy]

Hi everyone! Sorry I haven't been on here much lately. I'm finally starting to feel human again after catching a cold over a week ago. It's annoying how much longer it takes to get over sickness than when I'm healthy.

Snappy - It's always so much fun trying to plan WDW trips around the best deal you can make. I do hope you get to try Beach Club - Stormalong Bay can't be beat. I know most people rave about Coronado Springs, but we are not fans. We have given the place three tries and won't go back there. Too spread out, rooms weren't in great shape, poor service by CMs and we don't like the surcharge at the food court.

Sorry about the cold. That is the last thing you need right now. Glad you are getting over it!

Thanks for you comments about the Beach Club. We actually love that area since we have stayed multiple times in boardwalk villas. It is just that even with 45% off rack rate, I can still get 4 CSR rooms for the same cost as a 2 bedroom at the Beach Club. I also like the fact that I can cancel a room if our college aged kids decide not to join us but it is harder to downgrade to a 1 bedroom at the villas with the 45 % off rate.

The rooms have been redone at CSR during the past year. They upgraded to queens and the rooms look nice. I know what you mean about being spread out though. We were lucky when we stayed at CB last January, we got a very well located room and we had a car that we could park very close.

We don't eat much at resort counter service so I am not worried much about that. I don't like the sound of the CM's being unfriendly though.

Anyone else stay at CSR? I am hanging on to my Beach Club reservation for now. Got time until May I guess.

But thanks for you insight.

Where else have you stayed that you like?

I liked WL, especially the courtyard view but the AKL Jambo studio was not to my taste. The bed was marginal at AKL but we liked the ones at WL. I also found the walk down to and back from the bus loading area and PIA. Also found the AKL room too dark but that was not a deal breaker. I really like the Boma breakfast and the meal we had at Sanaa ont he Kidani villa side.

I was kind of a bad girl yesterday. I got a good Southwest ding and booked a what may end up a solo trip the first week in March. I should be done with my accounting deadlines by then. I think I was feeling sorry for myself after this surgery nonsense. I grabbed 5 nights in the Port Orleans French Quarter. It seems silly living for so long down here in Louisiana but the smallness of the resort was attractive to me. I am really walking kinda slow these days and being close to a bus stop is very intriguing.

 

[Sha]

Good for you and your Solo trip! Nothing wrong with that.. and i agree that POFQ is nice with the smallness of it. Very quaint.

I havent stayed at CSR but a friend loved it. I have been on property there to see her room and is similar to the other mods. The only place I have stayed at that i didnt like was CBR. I am not sure why... just not one i liked. it was a bit spread out for me I do remember that and the noise from the bus as we were right by a bridge and the road.

I love beach club! and the pool is awesome. you walk in and its sandy on the bottom. Plus Beaches and Cream is right there.

 

[snappy]

I have mostly been lucky with room locations although we did get the dumpster and smokehouse view at WL in 2008 (only paid for standard as there was no discount whatsoever available for our dates and we needed two rooms.

Also struggled with a studio at OKW that was WAYYYYY to clos to the bus route. Enough to give you nightmares.

So I think it is luck of the draw which room you get.

My favorites ahve been at Boardwalk hands down, second was the courtyard view upgrade I got when my mom went with me to the RFTC in 2007 (good time for an upgrade). Even my room at Pop was good.

I always get a little nervous at the room assignment moment. I hate to ask for something because the one they switch you to might just be worse.

I am peeling away at work. I am overwhelmed.

DH is wanting to combine the trip with a beach stay for a few days. I guess he has enough pixie dust for awhile. I just don't see how it can work as DD14 wants to go on a youth group trip after 2 days after we check out of Boardwalk. I really see risk in going to the beach first (can you imagine Disney with a sunburn when you arrive?) DD14 is especially vulnerable as she is a very pale red head with blue eyes.

I gotta work on him. He also wants to go to Universal but both of our daughters are Harry Potter fans. I want to wait until they fully open the new HP area.

I hate to just bank our points as we already bought our AP's for this year in November. I just gotta 'plain it all to him. I understand he wants to do somthing else, but hey I wanna go to the beach without trying to find a place himself, it will be me trying to pull everything off.

WDW is just easy for me now and I need no more complications!

I need to shut it and think about what is important here. Sorry. Better to rant her than at DH, right?

 

[luvmarypoppins]

Good morning ladies

Laurie - a solo trip sounds interesting. I dont know if I would like that for myself however. You are adventurous!!

Candy and Laura - hope you are ok

KJ and Fl Lisa - hope you are both feeling well too.

O.K. the moment is over, but yes I am an information seeker, My reg. surgeon I am afraid will not say too much. He likes to control everything just as I do!! Hmm, a clash of personalities?? I might bring dh with me for reinforcement. He likes dh and thinks he is smart etc. enough of me and why do you ask, lets see in my happy little world today...

Ds 19 is now ds20!! Emily is throwing him a party tonight. We most likely will celebrate sun. as a family etc. and he now informs me...last niight I accidently backed into some guy. (Ds had his friends in the car), so he went to the guys house, signed a paper that he did it and the guy will get as estimate which he says should not be more than $400, thats nice, glad ds worked alot this past week. as if the speeding tickets were not enough to deal with, will this young adult of mine ever learn I know he says he has a problem with backing up and seeing in his car and I have been a witness to that too when I was in the back seat.

DS 22 who borrowed my van that barely works yest called it...a death trap, yes ds, that is why I need some new wheels etc.

Dh tells me he is being hung out to dry for 3 hours today. That should be interesting. I told him I will pray alot for him. He is watching his words.

I must get back to , have a great week end. GTAGWTA,

 

[KJ Luvs Pluto]

Hi Everyone. Thanks for the thought LMP. I realized I've been lurking a lot but not posting. I've been thinking about all of you dear ladies who are going through so much. I have so much respect and admiration for you.

I'm halfway through my third chemo treatment. Everything I do seems to take me longer and takes more energy to accomplish -whether it's work or chores at home. I'm working part of a day today and then trying to get part of the house cleaned and a bit of baking done. Just the thought of it all makes me tired much less completeing all the tasks . Then the dog needs to be let in and out a dozen times a day - he's almost thirteen and forgets that he just was outside two minutes ago. Poor guy, I sometimes know what that feels like. I think it's the Chemopause .

I hope everyone has a healthy weekend. to all for all you are going through.

 

[wdw4us2]

KJ - Yea for being halfway done with your chemo! I share your feelings about everything taking longer and having no energy. I just look forward to the day when that will no longer be the case.

LMP - You sure have your problems with vehicles! May I make a suggestion for DS 20? We always back our vehicles in wherever we park them - driveway, garage, parking lot, etc. I have also taught DD and DS to do the same. That way, when you're leaving there's no chance of backing into something. It seems easier to do when you're arriving than when you're leaving - I have no idea why.

Snappy - Where do I like to stay at WDW? It depends. I have stayed at every resort on property over the years. My faves are: Deluxe - Polynesian, Moderate - Port Orleans FQ, Value - Pop Century, DVC - Old Key West. I also like the cabins at Fort Wilderness if I can get a deal. My favorite Concierge Deluxe is Beach Club. If you ever want to know specifics about my resort opinions just PM me. I think it's great that you are going to make a solo trip - they can be a lot of fun!

I had my weekly Herceptin today. While the infusion went well, my labs were terrible. My platelets are low again - too low for chemo. They'd better come up by next Friday or I will lose my mind! That's supposed to be my last chemo and I just want it over with. I'm sure those of you who have been in my position understand how I feel. My white and red cell counts are probably low because of the cold I'm almost over. Now that I'm feeling better I'm really hoping that everything comes back up next week.

Have a great weekend everyone!

 

[KJ Luvs Pluto]

wdw4us2 - I hope your counts come up so you can have your last treatment. What a wonderful milestone that will be. Every time I go in for chemo and get the labs done first I worry that my blood work will come back bad and I won't be able to have the chemo that week. It will be nice to have it over with. Then comes radiation every day for six weeks - not sure what that will be like since it's a two hour drive also - but soon - it will all be just a memory. And maybe with Chemopause being as it is - not even that .

I too back in everywhere so I can just drive out - my parents taught me that way too many years ago and it has stuck with me every since. It also has taught to be pretty good at backing up (not sure that's a skill that can be used on a resume but sometimes friends are impressed).

Have a good weekend everyone. Stay safe if you are like us and expecting freezing rain/sleet this weekend.

 

[NHAnn]

SO frustrated...typed out a long post and lost it.

No time to recreate now....so I will just say I hope you are all having a good weekend!

Avery was released from the hospital Thursday

GAGWTA!!

 

[lookingforward]

Hi everyone! I am so sorry I have been out of touch...work is crazy and I just started my first class towards my PhD and it is kicking my you know what! I am going to stay up later and catch up on this thread and everyone who has posted. I miss you all! More later. GAGWTA!

 

[Candy30]

Hi Everyone,

I have not caught up on everything. Sorry I haven't been here. Work is kicking me around. I now have become a purchasing agent for the hospital. I won't complain because we have goine through 2 rounds of layoffs and it is really insane crazy. My husband was called from a temp agency and has been working for 3 weeks now.

I miss you all very much. I love the term Chemopause!! Brilliant!! It certainly feels that way when you are going through it.

KJ and FL Lisa Hope all goes well for your treatments.

LMP love ya girl! SHA HOnu, Snappy, Ann (your message dilema happened to me too!) PNM Elizabeth and everyone else (Please don't take offense my brain cells are fried, poach, boiled and cajun)
GAGWTA!!

 

[snappy]

Hey Maureen! You are amazing!

Ann, I hit some button and my posts disappear too. I guess it happens to the best of us. What a bummer!

Candy, we are just haapy to hear from you. Congrats for holding on to your job. Not easy these days.

DH is feeling better and at work now. DD14 was invited by a girl friend to the cotillion snow ball last night and had a very good time. She had the cutest, innocent little dark royal blue dress, high neckline, I loved it. She was probably the most modestly dressed girl in the room! I wonder how long this will last?

It was a masquerade dance and we had to get a mask. We waited to the last day so it was slim pickings, but she looked like a little doll. She spent a few hours putting ringlets in her hair and she had a spa pedicure and manicure with at least 4 class mates. Fun for her!

I may go for some nail help later when it isn't a zoo.

DD14 has a big middle schoolsoccer game today, I guess the last one before the tournament. It is warmish but the fields are swampy. Need some hip boots and repellant!

I should try and fit in some work, maybe after soccer and before football?

Everyone's breath is baited around here, the saints in the last round of the playoffs, with a shot at the Superbowl??? We are collectively pinching ourselves. We have not been down this road before. Do miracles happen?

Quietly, I say, GO SAINTS!

 

[CherylDan]

Just thought I'd pop in for a quick hello. Life's been kinda nuts lately, really getting in the way of my computer time... It's all good tho!

Hugs to all those in treatment!

I hope everybody had a good weekend.
GAGWTA!!

 

[snappy]

It is a miracle! Saints in the superbowl.

I ended up working a good while yesterday so missed a lot. However, since it went into overtime, I had plenty left to see last night.

I just had to try and get caught off at work with reporting. Finished the quarterly bingo report. We did not lose our shirts this quarter but we have not gotten into the black yet after 6 months. The bingo hall reopened this week, minus the two charities that were not paying the rent and a new third party lessor, with fewer hours, just one session a day.

Not sure if we will earn more, maybe we will lose less? The board may pull the rug out from under bingo at the next meeting, I am hoping so. One less aggravation for me!

GAGWTA!

 

[Pea-n-Me]

Congratulations! We'll be rooting for the Saints!

So nice to see everyone posting!

GAGWTA