Dis Breast Cancer Survivors - GAGWTA!

[micki7337]

Thanks all! It is definitely the fear of the unknown that has me - but I'm also feeling anxious to get started! I did read something about how to visualize the chemo as a healing white light and I am someone who can "brainwash" myself into believing anything. I have always been someone who could take one dose of a medication and be cured. One Alavert and my sinus infection is cleared; one shot of cordizone and a pinched nerve in my back has never returned. So I am extremely hopeful that the chemo will wash my body clear of the bad cells. I'm wondering now if my chemo will come weekly like originally planned with the hypcertin or if the cycle will be changed to 3 weeks. The rad oncologist didn't know and said the decision would be up to the oncologist. I'm thinking the 6 treatments 3 weeks apart gets me thru all this much quicker than the 3 weekly/1 week off cycles.

One more test done today and the nurse was wonderful! One stick and she found the vein. This was the brain CT just to complete my studies. Tomorrow is the MUGGA Scan and next Monday the PET. And somewhere in there I have to pee for 24 hours!

I went back to work today after the test and it was a little strange. The word is out and everyone is coming by to express their concern. Everyone is amazed that I'm the 3rd woman with BC in my immediate work area in the past 2 years. I had them all laughing with stories of my surgery (did I tell you the surgeon taped my left breast to my knee? ) and my wedding and our meal at the pizza palor afterwards! (okay, not really a pizza palor).

I'm hoping I just suffer from the fatigue and that the nausea, muscle aches and mouth sores are minimal. I do recognize that everyone's journey is different and that my side effects will be different that others. I like the idea of visualization altho I'm not certain that I want to use my time on the Disney Cruise. It was a heck of a trip with DMIL that I'm in no hurry to re-live. I'm thinking St. Bart's or Nevis.....warm, relaxing, pre-kids and pre-hubbie!

Hope everyone is well. P&PD

Margie

 

[MNSusan]

Greetings, ladies! I don't get to the DIS very often, but when I'm here I catch up with everything that's going on with you. (((((Hugs to everyone))))

I wanted to jump in on the chemo/no chemo discussion. If your aunt has DCIS (ductal carcinoma in situ), the treatment almost always recommended is lumpectomy and radiation. They decided not to do radiation for me as my area of involvement was so small, there were no additional cancer cells found in the lumpectomy tissue, it was not high grade DCIS, etc. This way, my oncolgist thought, IF there's a recurrence, we have something to do. They do not radiate twice, so the only option would then be mastectomy.

I'm doing mammos every 6 months and Tamoxifen for 5 years. I've been taking it since mid January with few side effects. The one thing that's really bugging me, though, is how ditzy and distracted I am. I've always been a very organized person and now I can hardly get through getting dressed and brushing my teeth without a list to remind me to do it!

I've gotten very forgetful and its driving me crazy. I was going through some pix of our Disney trip with my son's family and found a great photo of the five of them. I thought it would be nice for them to have a copy to frame, so printed out an 8x10. I gave it to my son at his house the other day and he said, "Mom, come here a sec." He walked me over to the very same photo in a frame hanging on their wall. "Huh?," I said. "You already gave that to us," he said and put his arm around my shoulder. Usually I laugh, but sometimes I just want to cry.

 

[NHAnn]

The one thing that's really bugging me, though, is how ditzy and distracted I am. I've always been a very organized person and now I can hardly get through getting dressed and brushing my teeth without a list to remind me to do it!
I've gotten very forgetful and its driving me crazy.
............. Usually I laugh, but sometimes I just want to cry.

Oh my....one of the reasons I love this thread...it makes me feel sane and understood. When I'm with my support group friends I find myself nodding when they talk about "chemo-brain" then I think...hmmmm...what is my excuse?!?!? I have said more than once "I swear they radiated by brain cells and well as my breast cells..." I've often thought just the stress of Dx and treatment contributed to the forgetfulness, or lack of "sharpness" as well as just getting older (though I'm not yet 49)...I'm on either Tamox or Arimidex....so I guess estrogen deficiency has something to do with it!


Mom2....I had DCIS....surgery and rad, no chemo. Hope you canget the answers and peace of mind you seek.

Mikki...

GAGWTA!!!

 

[MinnieM3]

Well Gals, I'm back HOME! Just got in tonight, a day late because of a flight problem. SOOOO glad to be back home and see my kids and pets.

I'm so tired, but had to say HI! I start chemo tomorrow! Whew! I'll get it daily for 7 days and then off for 7 days. It's oral/pills. I think I have to take 7 a day along with some special viatamins. I'll find out more tomorrow as I re enter the world of reality.

Thanks to Dan for posting and to everyone for your prayers.

I'll write much more later, when I'm awake!

Beth

 

[MerryPoppins]

Welcome home Beth. I continue to hold you up in prayer. Let us know how things are going. We're all pulling for you.

 

[NHAnn]

Welcome home Beth......when you swallow those pills today, know that we are all with you in this battle!!

GAGWTA!!!!! It's a beautiful spring day in New England!! I am going to do my best to enjoy it while wishing I was at opening day at Fenway Park

 

[snappy]

Glad you are home safe, Beth. Hope you got some good rest last night.

 

[Pea-n-Me]

Yes, Welcome Home, Beth. Glad you are at the point now where you are on a determined treatment plan. Looking forward to hearing more about your trip to NYC.

I agree, Ann - beautful day today! I spent the entire day yesterday spring cleaning the way I used to (wasn't up to doing it in 04 or 05). I love it when the house is so clean! I did windows and curtains, moved furniture, went through "stuff" and threw out a whole extra large trash bag full, etc.

That show Designed to Sell has really inspired me. We've made a few small changes to our house and it's made a big difference. One of the biggest things, I think, is just getting rid of "stuff". I finally got tired of the denim slip covers I had on our older family room set, always a mess no matter what (and they were the "nice" ones, too, from Pottery Barn). We picked up a new sofa and loveseat set at IKEA fairly inexpensively last week. Amazing what neat furniture and cleaning up will do for a room (don't get me wrong, I'm a neat freak to begin with, but our house is small and with the kids here we've accumulated mountains of stuff, as I'm sure you all know all too well). Of course, it took some convincing to get DD to part with her "home living" area, but to replace it we pulled down a beautiful doll house from the attic so it looks 100 times better in the room now without all that paraphernalia as DH calls it.

After Curves this morning I'm headed to Lowe's to pick out a new paint color for the living room. Although we're still planning a renovation one of these days, I decided that room needs some immediate sprucing up, and DH agreed it wouldn't take much to paint it and the hallway which has pretty old wallpaper and dark wood on it - people think the look is deliberately "antique", LOL, so I've never been rushed before. But seeing how nice it could look on DTS, I really want to do it since it's the first room you walk into. The outside looks awesome I have to say, then you come into this dark room. So bright it's going to be!

I just sent the kids off to school in all their Red Sox gear! Since it's Opening Day they have team pride day at school. DS8 is already a huge fan, like his Mom. We have tickets for a game next week, I managed to buy seats for 4 games amazingly this year, including one Yankee game. Growing up, I went to many Opening Days and other games thanks to my uncle, a Boston PD, who always detailed the games, let us in and found us some seats. How spoiled I was! Now it takes a small miracle to get tickets! Anyone see Johnny Damon on Letterman last night?

In honor of Opening Day:

Fenway Dreaming...

Nothing better than the first Fenway Frank of the season...

We are celebrating a birthday in our house today. Liesl turns 2!! Hard to believe. She was my "end of treatment" gift from my family.

 

[snappy]

Really great pictures, Linda.
Thanks for brightening up my day.
Fun hearing about your home improvements
I am hoping we get more stuff done next week during Easter break. We have a LOT to do.

Now, if I could get myself away from this computer, maybe I could get something done.

 

[Pea-n-Me]

Now, if I could get myself away from this computer, maybe I could get something done.

LOL, Laurie. Agreed!

Have you watched Designed to Sell yet by any chance?

 

[snappy]

I am feeling kind of

Do tell, what channel and time is Designed to Sell on? I need ideas and inspiration.

I talked to DD15's friend's mother last night. They are moving to Dallas June 1st due to her husband's promotion. She sold both their current house and the house two blocks away from their current house that was purchased for her mom and dad from Pass Christian, MS the week after Katrina. Her mom and dad are moving back to MS. Her new place north of Dallas sounds wonderful.

She sold both houses without a realtor. Reasonably priced houses are selling very well here. I think a lot of former New Orleanians continue to put roots down here, at least temporarily.

I met a nice family at our neighborhood crawfish boil Sunday from Lakeview who bought a house in our neighborhood. Funny, we know some of the same people, and her job was located one or two buildings down from my old job in downtown N.O. Small world. All three kids are at LSU.

I would love to sell our house and buy something less high maintenance. I have so much to do inside and out it really is depressing. I about killed myself Saturday trimming trees. DH was occupied painting, and anyway he is the very last person you want to "trim" anything. He becomes the Texas chain saw murderer when he gets going. Now I need to clean Snappy's area in the back yard and start fertilizing the azalias, etc. I am also thinking about trying to mow some before it gets too hot today. DH has succeeded in killing off all the weeds, but now the grass is growing like craazy. I am just trying to pick up the slack while DH is painting and DS17 is busy with his paper (he has to turn it in Thursday, thank goodness ).

We also have painting inside to do. We had some wall repair done a few months ago in the foyer, dining room and living room, and anyway we have not painted indoors except DD15's room since we moved in in 1999.

The company my DH works for has a project a few years down the road (not sure how long) for upscale, smaller lot homes (read: no gardening work). DH has already talked to me about it. It is starting to sound better and better. I want to know if we can get a butler and a cook too.

This house is 22 years old. I feel like we are slowing remaking the entire thing over, appliances, A/c and heat, etc. We redid the baths before we moved in. This is getting ridiculous.

Sorry about the vent. Small potatoes in the big scheme of things. I am going to try to look at everything with "Easter" eyes this week. I am planning on making as many services I can this week.

 

[snappy]

I did most of the lawn. I gave up on half of the back yard with little grass. It is not going anywhere.

Not bad. I think I finished in an hour and a half. Thank you Honda self-propelled.

I am vegging now. I am kinda happy with myself though. It is amazing what you can do when you are determined.

 

[MinnieM3]

Here's a (cheating) cut and paste brief report on the doc. visit there. Since I got up at NOON today, I'm running, ahem, a bit behind!

Hi everyone,

Jim and I got back from New York last night. We're quite tired, but I wanted to get off a quick note to let you know how things went.

The breast oncologist concurred with my oncologist here in that this is now metastatic breast cancer, otherwise known as Stage 4 breast cancer. The two known areas are a 2cm mass in my lung and a 1cm mass in my abdomen, NOT on any organ. They are not positive that the lymph node in my chest is involved.

The course of treatment will be chemo, starting tomorrow morning for 7 days. Then I'll be off for 7 days. Right now this chemo, Xeloda, I can take orally, 7 pills a day. IV chemo may be needed later. It has some nasty side effects, most common, the typical nausea, vomitting, diarhhea, mouth sores, and this one also causes your hands and feet to turn very red and swell. I'll just have to see how I react to this particular drug. I may get by pretty easily, who knows!

My doctor at Sloan is also interesting in getting me into a clinical trial if at all possible. We need to check with our insurance. The drugs in this trial go after the cancer in a different way, by cutting off the blood supply directly to the tumor. We will be investigating this during this week.

After 3 months on Xeloda, they will run CT scans again and see how things are: same, better, or worse and go from there.

I have not been given an "outlook" or "prognosis." The doctors just don't want to give out that information apparently. Basically, I will now live a life with cancer. I will not be cured. If I am lucky, I may go into remission at some times. It's rather hard to wrap my mind around. BUT, I do insist on *living* with cancer and NOT dying *of* cancer.


More later on the BIG APPLE!
PS....got my pills so late today I will start tomorrow!

Beth

 

[NHAnn]

Beth, glad you slept in this morning!!

snappy/Laurie....you go girl!! You too Linda. Tell me more about this Design to Sell show?? I need to get inspired...I am in denial over the thought of getting this place ready to sell this summer. There is a TON of stuff that needs to just be heaved. DD is bringing home a friend from school for the weekend...they do not have a long weekend for Easter, just the normal Sat and Sun...so the friend is not going home to NJ. The dorms are staying open but DD invited her here. It's fien with me and gave me a little impetus to do some spring cleaning the last couple of days....windows ...bathroom cupboards, etc. (I threw away a LOT of really really old cosmetics/lotions. And about two dozen shower caps from hotels even though I saved about another dozen (no clue why since no one here ever uses shower caps LOL)

Thanks for the Fenway pics Linda....made my day!
Your comments gave me a flashback to summer days/evenings in the 60's...my father mowing the lawn with his push mower, or sitting on the front steps watering the front lawn with the garden hose....with the Red Sox games blaring from a transistor radio!!
I haven't been to a game since summer 1993...it was a Yankees game and I still have the ticket stub. DH had proposed to me that day
Last summer I vowed that before I die I MUST get to a game AND sit in the Monster seats!! No idea how I'm gonna pull that off, but we'll see!!!

GAGWTA!!

 

[MerryPoppins]

Hi. I'm just stopping by with some happy news! My DS just decided today that he's going to OU next year. I'm beside myself with joy. We live in Norman, so he'll just be across town. I still won't see him much, but I'll know we're right here when he wants to come by for a homecooked meal or to get me to do his laundry. I'm an OU graduate, so I'm proud enough to pop.

 

[Pea-n-Me]

Beth, I will be praying that your scans show major improvement at the end of the 3 months.

I do insist on *living* with cancer and NOT dying *of* cancer.

Awesome to hear, sista!!

 

[Pea-n-Me]

Laurie and Ann, Designed to Sell is on HGTV, Sunday and Tuesday nights. You've got to watch it, it's amazing! Still on a roll here. Decided the kitchen/dining room valances were beyond being washed, remembered I bought them back in (don't laugh) 1994. Bought some nice new ones today, and once again, seemed to really brighten up the rooms.

Laurie, I was ROTFL picturing you mowing the lawn for hours on end with the self-propelled mower. Take it easy, will you sista?

I also got a kick out of hearing the term crawfish boil. I imagine it's something like our clambake, LOL.


Ann, see these pictures, it'll bring back your memories of being at Fenway. http://www.disboards.com/showthread.php?t=854520&referrerid=70088 I love the fact that your DH proposed there, especially during a Yankee game!! P.S. I loved my transistor radios and later, portable 8 track players. OT do you know I went to Walmart to buy a tape recorder to tape my DD's snoring before we see the ENT - aka tonsil doc - next week. Well believe it or not, I couldn't find a small, simple one, they really don't sell them anymore. Just MP3s and Ipods, CD players and such. Amazing how technology changes, isn't it?

 

[MerryPoppins]

Beth, I'm picturing the drugs shrinking those two areas just like the magical stuff that Alice eats/drinks. I'm thinking tons of positive, healing thoughts for you. Hope you have few side effects, but we'll be here to lift you up and maybe make you smile no matter what. Keep us informed.

 

[snappy]

Beth, you are my heroine!!. Your attitude is infectious. I was thinking of you, all of you actually, but especially Beth last night at the soccer practice field. We had a more beautiful than usual sunset, and the moon looked like a full one. It was so lovely it made me ache. All I could think about was how great God is, he definitely had a hand in that sunset. I was just gazing up like a zombie, and I realized one of DD10's friend's moms was sitting right there on the bleachers too, doing the same thing. She said she just did not want sitting there looking at the sky to ever end. It was cool, low humidity (rare these days) and no pesky mosquitos (just a few caterpillars). We were just quiet a while together.

It was a great moment to pray, and I did.


Merry, what a great image about the meds shrinking Beth's tumors like in Alice of Wonderland.

Merry, I am glad your son will be nearby. I know your son would have been a big asset to Tulane and Louisiana for that matter had he chosen to go to Tulane. Honestly, though, the things I am hearing from New Orleans are not positive right now. Even people whose houses were not flooded are not doing well. It is hard to find what you need. Also, the police force is not adequate to say the least (it was not the best before hand either). So I think security is a big issue, and people are scared in certain areas. I actually think whole state is in for a long period of difficulty. I wish when we relocated back in 1999 we had left the state. It just was hard since DH's entire family was in the New Orleans area.

I am hoping DS17 chooses LSU (he is a junior now). I think he will. I know he will need space away from us but I can't see him independent for quite a while. I am still washing his clothes, making his lunches, etc. Boy is he in for a rude awakening.

Ann, is your daughter totally recovered? She must be back into gear to be back in class. Has she caught up with what she missed?

Linda, I cannot believe you found the smilie pushing the lawnmower. You are a hoot. You know most of the time I push the mower with one hand to minimize the vibration to my left arm. I am sure anyone driving by must wonder about it. I also lifted my left arm and did fist clenches alot. If that didn't make them wonder, I am sure my RED face did. I had a hat on, it wasn't sunburn, just exertion. Even after I showered I looked as red as a crawfish (or a lobster for my northern sistas). I almost fainted when I looked in the mirror. I am surprised someone driving by had not called 911 for me.

Crawfish boils are a rite of spring (that's when they are plentiful in the wild anyway, although you can get them from crawfish farms most of the year anyways). You buy them live in big 30-50 pound bags, wash and "purge" them with lots of salt (they live in the mud, you want to eat as little mud as possible), then boil them on propane heated burners outside. You use lots of spices, sale, lemons, celery, onions, Zaterains's crawfish seasoning, and whatever else you feel like putting in the boiling water. Lots of small red potatoes and ears of corn go in too. It is messy eating, generally an outside affair with newspaper used as table clothes.

We have not done one in a while, it is a lot of work. People do them for baptisms, First Communions, retirements, birthdays, whatever. Good Friday is a prime day for them, the priest Sunday night even joked that when he asks kids what Good Friday means, they say CRAWFISH BOILS!!!

Linda, speaking of First Communion, what are your plans for your kids' special day?

I am going to have to catch that TV show. Your new valances sound awesome. Hey, you are doing better than me with your old ones from 1994, I took the ones in my kitchen and breakfast down when we moved here in 1999 and never put any new ones up. After the wallpaperer covered up the holes for the rods, I just forgot about it. As a decorator I am a compete failure.

GAGWTA!!!

 

[Pea-n-Me]

Merry, I'm glad you're happy with your son's choice of college. I don't blame you for being glad he'll be nearby. What does he want to study? It's a long way off for us (about 10 years), but I'm already thinking about where I'd like them to go, LOL. The thought of them both leaving and going far away at the same time right now makes me I also realized recently I'll probably be losing the dog around the same time, age 12 (only one of my GSDs made it to 13), so that was even more One more reason to enjoy our time now, right?

Laurie, once again you put a on my face this morning with the

and

visuals! It must be nice to have warm weather most of the year. Our clambakes would be a summer affair, spring here can still be pretty chilly. Believe it or not, I'm not a big fan of lobster, though I did order one at Palo. They told me the southern lobsters taste a little different than the northern ones, I enjoyed it nonetheless.

I decided after First Communion we are going to take the kids and grandparents (and possibly one of the godparents) out to lunch at a beautiful restaurant up the street overlooking the ocean. Keep it simple. Last week we decided on doing the updated family picture on the beach in July, so we'll throw a cookout then for the rest of the family. Our kids and two other nephews weren't even born when we did the last one so it's time. We're all going to wear white polo shirts and denim shorts. Should be nice. There are 11 adults and 9 children on that side of the family.

Enjoy the day, everyone!