Chemo Starting Sep 09
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Yahoo! B9!!!
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Dear Sisters....I have spent the last hour or so catching up on the last 2 1/2 months of posts & was sad that I'd missed living through the great, good, not so good and just plain bad times with all of you. Happy Belated Birthday wishes to you dear older sisters of mine...Patty & Vickilynn...and you baby sister, BarbAnne!!! Jane & I will be celebrating our days in July
Patty: I remember you telling Vickilynn and I about your 80 year old neighbor at Christmas & I'm so glad she's doing well...a great inspiration. I'm so sorry that so many of our loved ones and acquaintances are going through this crap!! My eyes almost popped out too when I saw Pamelajo's post. My son had called and I just said I couldn't talk because I was so surprised! Thinking of you dear sister...happy that you made some life changes that made you happy & praying that you stay ALIVE!!!! Glad for the good tests, successful treatments & b9 diagnoses for sisters! China...I hope all turns out well for you and I'm so sorry that reconstruction's been a 2.5 year process! ALSO...I loved Scotty from the start so I was sooo happy that he's our IDOL!!! I found the post where I'd cancelled my onc appt. I want you all to know I went in the next week and my onc appt & blood tests were excellent...that was in April. Next on the schedule was my mammo June 2nd (every 6 months-last being in December). The tech said the dr. needed more pix...I froze. So, more pics. She showed me that there was a cluster of calcifications that the dr wanted a closer pic of. Then she came in and asked if I had anyone in the waiting room that would be with me to talk to the dr. No...I've had mammos for 20 years and I've only had 1 bad one...exactly 2 years ago (on June 1st, 2009...my daughter's 30th birthday). The dr said it was "highly suspicious" and I needed a biopsy. She was wonderful, explaining this was very troubling, especially since I had had a perfectly normal mammo in Dec...plus, had gone through the full bc treatment and all tests had been perfect, and that this is the horrible part of cancer...no explanation. I've felt wonderful, have absolutely no body aches any more, have been walking, have lost 15 lbs, working at a great school..life was great! My biopsy was Monday and Thursday, my other daughter's birthday, I got the results: 3 cent invasive ductile carcinoma w/insitu. The same type C, but in calcifications, not a mass. Bone scan Mon, Ct scans on Wed, and my clinic review (with surgeon and oncologists) to talk about plan of attack on Friday. My biopsy radiologist spent a half hour discussing what they'd do-it was a stereotactic instead of ultrasound led biopsy-and talking about what-ifs...a wonderful man! He said it was difficult to think of going through treatment again, because you know what's coming. I said I didn't know if I could do it again and he said, "You can, and you will, if that's what needs to be done...and we will be with you, throughout all of it"...I was suddenly at peace. I don't know why this is happening, I have to have faith that there's a grand plan...only God knows what it is...but I will be strong and do my best-AGAIN-because I don't want to die. This time will be a mastectomy & I remember the posts, like China's and Wanda's, that make me really nervous, but I don't think I can be without breasts. I have a dear friend who's just finished her chemo and rads & I couldn't tell her this news....but another friend did, and she met me at school on Friday morning with a huge boquet of flowers. She said I was always her inspiration and she's be right by my side and today I had a 3 hour coffee date with another friend who was diagnosed 6 months before me. She told me not a day goes by that she doesn't worry about it coming back....and I told her I'd never thought it would ever come back. So much for being positive...this is me having a pity party
SOOOOO....sorry guys, for having to share crappy news, but you're the ones I lean on...and I will need you again! I thought I'd look at the forum for recurrence...but I needed you first. I pray that everyone continues having healthy reports (Patty..hoping the ankle keeps healing!).
Jane, Patty and Vickilynn...the family reunion that was planned for the TATA reunion weekend is being combined with the Centennial celebration of the little town where Tom and I grew up so I know I won't be able to join you. I only hope I have hair, eyelashes, & maybe foobs by then....guess it's better than not being around at all.....ok, another pity party.
Love you all....thanks for being there for me.
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Ronnie, I am a big positive healing hug to you.
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China I am sooo happy for you big hugs.
Jeez Ronnie, you know we are all with you, and will support you through it all, I know it is not the same, but I have had two mammograms where the follow up letter says " an area that is probably benign" wording drives me nut, and I just hide the letters, i figure and hope they would tell me if it was a worry. Have you been on anything since chemo and rads? Tamoxifen, Arimidex???? I am there praying and hugging you please keep us posted.
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Ronnie - I was overwhelmed by your news this morning and I want you to know you and your DH are in my prayers. My DH wants your DH to know he's in his thoughts. I will write more to you later.
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Ronnie - I am so so sorry for your news and what you are facing. I hope that you don't mind if I tell you I sat and cried as I read your news. I too have always thought cured, it will never come back. Was it in the same breast? When will you have your surgery? When will you start chemo? Will it be the same txt as before? I ask all these questions so we can be prepared to be with you every step of the way, in thoughts, prayers, whatever you need from us. I know you are busy and don't have a lot of time to post, but we will need to hear from you so we can be your cheerleaders. I love you Ronnie Kay and we are here for you!
Jane
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Good Morning....it's early PST but I slept all afternoon and night so had more than enough sleep
Just a quick update before I go for a walk up and down the steep hill we're on. Had my bone scan yesterday and will have chest, abdomen and pelvic cts Wed. Jane: on Friday, the surgeon and oncologists will tell me about my tests and their treatment plan. I'm given the option of going back to the same surgeon that did my lump, but I think I'll stay where I'm being treated now...since it's where I had everything but the surgery (oncologist at the first place had bedside manner of a toad). Thanks Sisters...for your love and concern. This hit me like a lead balloon, but am trying to be positive, that it was found early and that I'm a stubborn girl that will get through what I have to! Yep, BarbAnne, I'm on Femara, and was happy that it just went generic so I now pay $15 instead of $360 for 3 months. I've also been on Zometa, like a super-charged Boniva (Sally Fields!), since there's osteoporosis in my family (along with every cancer imaginable) and to prevent bone mets. I think if you have another "iffy" mammogram, I'd ask them what's "iffy" about it...if they say calcifications, maybe I'd ask to be checked more frequently...hindsight's 20-20. They saw a couple of calcifications in Dec, totally normal...then in June, bingo, a whole boatload. My body grows things easily. I have lipomas (little bumps of just fatty tissue) all over my body. It's annoying, but that's all.
Oh Vickilynn: I do want to see the video! Tom could definitely use a lunch with Don right about now! He's pretty down, and he doesn't get down very easily (I can imagine why you hide letters, BarbAnne!). I was so happy that I didn't have to lose my breast, and get sick to my stomach thinking of reconstruction, which I know I'll do, mostly because we love swimming. There are so many options on the web, and they all sound horrific...can I say maybe worse than chemo...which is probably only because it's unknown.
Sorry to go on & on...will know more Friday & post. Love you all!
PS Patty...You're SO right on less saliva! So glad to have that explained. I read your news and immediately went to spray my xylitol, which our dental assistant gives us. She said someday it'll probably be used just like dental floss. It helps with the dry mouth, yucky taste. We've had it for a long time but I always forget about it. It's called BOOST-oral neutralizer, by OralBiotech.
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Ronnie- Thanks for posting and keeping us in the loop, Just know we are all thinking and praying for you. And praying for Friday! I just want to fly in there and help you, but I know thats over-kill, love ya B
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Darling Ronnie i am so sorry to read your news.
My first bc diagnosis in 2001 was ductal carcinoma in situ and after I had the mastectomy I had no further treatment. And my second bc was a different kind in the other breast. I have had both breasts removed and it really is fine. I have reconstructions and I don't miss the originals too much now! So I truly believe that if that is what has to happen for you, you will be OK with it too. Actually knowing what I went through the second time (having to have chemo, and ending up with lymphoedema) I would have said 'take both of them' back then, if I had my time over. But of course you don't know what's around the corner.
Stay strong Ronnie, I agree with your Dr, you will do exactly what you need to and you will be OK. I am just so sorry you have to go through this. We will be here for you so 'dump' anytime.
And China please tell us how you are going too. I worry about all you gals.
Please say a prayer for my friend Zahra who passed away peacefully at home yesterday, surrounded by her 4 children. her burial is this afternoon and my husband and i have been making sandwiches and cakes through clouds of tears this morning, for the gathering afterward. My heart is full of sorrow for a beautiful, generous, big hearted, feisty, funny lady.
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Oh Neece...my prayers and thoughts are with Zahra's dear family, as well as all those who loved her. You were a special blessing to her, I know, as well as she was to you. No more suffering for her, just eternal peace and joy...may you all feel that as you heal from her loss. Love and Hugs.
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Oh Ronnie. Your news is just...I don't know...saddening, maddening, depressing. You worked so hard to get beyond all this and now, bam, back at it again. I remember my surgeon talking to me about the lumpectomy and explaining that there is a slightly higher chance the cancer will return, but that a recurrence isn't as bad as mets and usually treated with a MX. SO...let's pray all your other tests show absolutely nothing! I know you know we will all be here to cheer you on...no matter what!
China - Good news for you!
Neece - Prayers for Zahra.
It is a sad day on BCO all around. Don't know if any of the rest of you followed posts by KonaKat a very brave, very funny Stage IV gal. She passed away yesterday.
I hate cancer.
Patty
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Hello SOSisters... don't we all hate BC? Little did we know when we started this journey that it would never be over. Yet I know that all of us have so much to be thankful for, but sometimes it is really easy to slip into those pity parties.
RonnieKay - please post us as soon as you meet with the doctors an let us know results and what will happen next. We are going to walk with you every step of the way and I'm willing to put my bald picture back up just for you!
Neece - so very sorry to hear about your friend. Doesn't make it any easier I know to tell you she no longer has to suffer. It's a loss that will only heal with time.
BarbAnne - so how is the walking going? Could you do double and walk for me? My motivation has flown out the window. I am 101 excuses for not getting off my lazy caboose and moving!
VickiLynn - how's it going? Are you at the coast? Swimming pool? Is your stormy weather cleared up and is the sun now shining?
Patty - how is the Famera treating you? I don't have the bone pain (at least not yet) with the Tamoxifin but the hot flashes are terrible. I sweat like a pig and guzzle liquids like crazy. Sorry to hear about another sister. We so need a cure for this awful cancer.
So Ronnie Kay obviously goes every 6 months for a mammo. What about the rest of you? I haven't had one since last July and already have appt. for this July. Now I'm thinking maybe I should be going every 6 months. What does everyone think?
Take care dear sisters. Thoughts and prayers are with you!
Jane
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Jane - I get a mammo every 6-months. Due for my next one next month.
Patty
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Hello SOSisters...hope everyone is staying cool. It is very warm here in N.C.
Patty - thanks for the info. DH and I were discussing this last night and it will be a topic the next time I see my onc. However, I too have a mammo appt next month. When is yours? We can commiserate while waiting for results!
Take care. Thoughts and prayers.
Jane
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Dear all,
So nice to hear from you all. DH and I decided to use Scaraway and see how things go for now. Keep you all posted.
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Jane- Yes I am still walking, DD is behaving, now DH is at it, I guess they are so much alike that if one is making me nuts and causing me pain the other one does....what is a girl to do?
As for mammos, yes the cancer breast is every 6 months, and both every 12. diagnostically, which from what I understand is higher pounds per square inch...I don't know, but I do know I can have a pretty casual conversation with the tech I am getting so used to them.
Patty- I did occasionally read about Konakat, how sad. my prayers got out to her, and Neece, my prayers go out to you and your family, as well as your friend.
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Ronnie - I'm thinking about you and wondering how your day went. Check in when you can. I was interested to hear that Femara has gone generic. I'm defnitely getting my brand name Rx changed when I see the Onc. Because of my deductible, I have to pay full price for one refill of Femara at the start of every year. $1770 for 100 pills. Yikes. I dropped one on the carpet the other night and you should have seen how fast I leapt from bed to retrieve it. Like real gold those little pills.
Jane - I actually made my mammo appointment for next week. Found out I see my onc on July 14th so I thought it would be good to get the mammo done before I see him. Good to hear you are doing better on the Tamox than the Femara. With frequent walking, weight training, stretching and (not least!) a bedtime Aleve, my aches and stiffness have pretty much gone away.
Onty - Let us know how the Scaraway works!
Barbara - Hope DH and DD behave over the weekend!
Patty
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Hello SOSisters....sweltering in NC and the hot flashes aren't helping! Took the grandkids to see Super 8 just to get them out of the house. They are 13 and 16, somehow I think my choice might not have been theirs but we had a good time anyway.
Patty - you will have a great mammo appt. - it's my birthday. Mine is on the 28th along with annual ob/gyn appointment. We are going the night before to Raleigh to see American Idol Tour and I'm hoping I can work the day of appt. as a day off. We won't get home until after midnight. I did not realize the Famera cost that much, fortunately DH has great health insurance. Don't know what the Tamoxifin really costs, last refill was $1.80 for us.
BarbAnne - your house sounds like my house years ago. If it wasn't one, it was the other and whatever it was seemed to be caused by each other with me in the middle. I am so sorry you are having to go through this trying time. It will get better! Have you thought of running away to Vegas, say the end of September? Yes, I do plan to walk today, I keep hearing this voice inside my head saying "get off your lazy butt and walk. The couch is not your friend."
VickiLynn - hope you are enjoying sunny days. Where are you?
Onty - good look with the Scaraway, please keep us posted on how it works.
RonnieKay - so we are all on pins and needles waiting to hear what the doctors had to say. Your sisters are with you in thoughts, please post when you can.
Take care. Thoughts and prayers are with you!
Jane
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I think I forgot to push the "Submit" button last time I wrote!
I know I wrote to tell Neece how sorry I was for the loss of her friend, and to agree with Patty that I hate cancer.
Patty - I had no idea your pills were so expensive! That's a big investment each year!
Ronnie - You are in my prayers and I too am waiting to hear your treatments scheduled.
BarbAnne - Keep up the good work - walking! That's an encouragement to me (who used to be very disciplined but lost it somewhere over the years!!!)
Jane - How was Super 8? I didn't know if it would be too scary for me??? We did go see Midnight in Paris last week - and I LOVED it! I am a Woody Allen fan and he's the writer/producer. It was just what I needed! Romantic/comedy/life starring Owen Wilson. And just so you know, I am alive and well!
Mammo's - once per year, but when I called the dr's office (it's actually a cancer center) they kind of went "huh?" when I asked if it was time to schedule mine! Last year in June. I'm calling again on Monday to set mine up. My onc. said to me - the last time I actually met with her right after ending chemo (for my every 6-month follow-ups I see her NP) - "it doesn't matter how soon we find cancer if it's mets..." Isn't that encouraging?
All - I had to change my plans about going to Vegas... I wish we could have all made it, but there's always next year!
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Good luck all of you going for mammos soon. I think it is very wise to have one every 6 months. When my second bc was diagnosed in 2009, it had been exactly one year since my last mammo and ultrasound. Scary how quickly things can happen.
However I will now never have to have another mammo in my life as I have no breasts left to mammo! Can't say I will miss them....
We held a beautiful community gathering to celebrate Zahra's life yesterday. She was such a well known and loved person. there were over 400 people there - standing room only in the local school hall. Her family spoke, as did a few others (myself included) and there were several musicians there (including my DH) as Zahra loved music of all kinds. It was such a special event. In life she was the kind of person who 'glued' the community together - and continues to be so even after her death.
I was so sad to read about KonaKat too- anyone who has been following the book lovers thread would remember her as the originator of that one.
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Hello SOSisters...I will definitely be speaking with the doctor about having a mammo every 6 months. Good grief, I should have been on top of this. On the other hand I have only had to sweat it out once a year instead of twice.
Vickilynn - Super 8 was cute but rather long. It's a sci-fi but not gruesome or scary. Glad you posted we were wondering where you had been. Did you set up your mammo appointment today?
Neece - it's wonderful that there was such a nice service for your friend. You can keep that memory along with the rest of the wonderful ones you shared with her. Hope all is well with you.
RonnieKay - we are all waiting to hear what the doctors said but understand you will post when you can. Just know we are thinking of you.
Patty - guess you and I are going to have to represent the SOSisters in Vegas. We will have to take pictures and tell the TATA sisters all about our wonderful group!
Take care. Thoughts and prayers are with you.
Jane
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Jane and Patty- Yes they behaved, well, we were out of town this past weekend a long time together both in a hotel room and in a car, and sightseeing, so I am keeping my fingers crossed we are turning the corner for a nice summer. Yes Jane they do love to put me in the middle. Ugh. You guys do us proud in Vegas? Take lots of photos!
Vicki- Thanks!! I used to be in much better shape, I don't know what happens....life?
Neece- Glad it was a lovely gathering, sometimes it is more about bringing peace to the living. Take Care.
Ronnie we are all thinking of you, post when you can!
Love
Barbara
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Neece - Did you see that someone included your friend Zahra on the "Angels" thread on BCO? So now she will be with all of us forever. I'm so glad you had such a beautiful memorial service for her. You wrote: However I will now never have to have another mammo in my life as I have no breasts left to mammo! Can't say I will miss them.... Did you mean miss the mammos or miss your breasts? LOL.
Jane - I'm all prepared to represent our SOSisters in LV as long as what happens in Vegas truly stays in Vegas...ha!
Vicki - I can't for life of me understand what your Onc means by saying it doesn't matter how long it takes to find cancer if it is mets. That's crazy. There are ladies on these boards who've been living with mets for years, presumably because they are being controlled by treatment. In that case, finding them sooner certainly seems better than finding them later! Plus, if a new lump is found in the breast and can be removed and treated before it spreads...why wouldn't the Onc want that? I'm confused.
Barbara - I'm glad the weekend was peaceful. My son has been out of school for three days and is already climbing the walls with boredom. Luckily he starts summer school on Friday. At this point he is looking forward to it! Me too!
(((Ronnie)))
Patty
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Patty - I'm confused by my onc. too. She's part of a cancer center and I think I might request someone else for the future. She really has upset my DH enough that he won't go to appointments with me - even though I only meet with her NP.
OK - so I think we should throw a surprise party for Jane because her birthday is June 28. What do you think? Let's go someplace fun... any ideas? Oh, and don't tell Jane.
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PS - this is a virtual surprise party so don't tell me you can't make it!
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Hello SOSisters....I'm all in favor of the virtual surprise party I don't know about BUT my birthday is July 14th
BarbAnne - so glad to hear that your DH & DD behaved and turned the corner. I know it is probably too much to hope it will continue but remember your nice weekend when you are ready to strangle them both!
Patty - I think if we do anything outrageous in Vegas we should share with our sisters so they can know that whatever we did we were with them in spirit. Does that make any sense? I'm not much of a party animal so you will have to be the ring leader!
Vickilynn - thanks for arranging a surprise party! How are you and DH doing and what have you been up too? It's very hot here in NC and we are having terrible thunderstorms most days. The poor people who lost their houses to tornados not to long ago gringe every time the sky turns black and I don't blame them.
About these onc doctors, sometimes I think they say what they think you want to hear at the time. I try very hard not to dwell on BC or recurrences but somehow that thought is always lingering in the back of my head. I like you am anxiously awaiting hearing from Ronnie Kay and finding out how she is doing and what is ahead.
Take care sisters. Thoughts and prayers are with you!
Jane
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Thanks Gals!!! Have been laughing out loud, and also saying a few ah sh..s out loud, reading posts. No matter how crappy things can be, humor is a good thing! I was reading the obituaries this am (why do I do that, I always have, and just can't stop). I saw the mother of one of the students that went to the hs I worked at. She was vivacious, active, energized. It said she died after a brief bout of breast cancer...I hate cancer too
So here's where I'm at..and embarrassed that it's taken me so long to post. I just can hardly stand reciting this...but typing's better! My new c is mostly dcis...a good thing, unless it's your 2nd cancer, then, nothing's a good thing. If the part that's invasive (of course, there had to be that!) is more than 6mm (which is pretty small, I guess...can I even be hopeful?), I won't need chemo again. The chemo I would have has less side effects (at least I wouldn't lose my hair..a definite plus), one would be a pill, the other an infusion, and I also need a port again (Oh Jane...I kind, sorta, not really, wish I hadn't had my port out!) because my new "growth" is HER2neu positive. I seem to grow things quite well in this body! The topper...they said I needed a higher resolution mamo on the OTHER breast, cause it showed the few calcifications that were evident on the "sick" one in December. OMG, I'm so glad you gals are being proactive about mamos. I did the every 6 mos too, good thing, cause they really did catch this early. Yep..Mon had the mamo on the right side & Tues, the biopsy. Waiting for that diagnosis, today or tomorrow.
When I went for the big pow wow, my nurse caught me in the hall, wrapped her arms around me and whispered that my body scans were clean. I saw my radiation onc down the hall, we hugged and cried together (she has a son 5 days older than Hank, so we bonded quickly). She said she'd met with the radiation team and physicists that worked on my brachytherapy & all were perplexed. The new c is in the radius that was treated...so this was a complete shock...something that should never have happened. My onc (who also teared up and said she was having a hard time dealing with this...so unexpected) said the chemo had obviously worked because there's no mets...thank GOD!!! They've repeated that this is rare-not unheard of-but very rare, to be back in the treated area, in this new form. I keep being in the stupid 20% and I'm sick of it. Anyway, the surgeon was going to do a single mast, then I'd have treatment, then after healing, have the other mast and reconstruction at the same time. However, now it looks like dbl mast, treatment, and later (maybe Nov), diep flap recon. The surgeon recommended that type and I'll have the same plastic surg that did a friends recon. I'm so sorry to go on and on, guys. It totally sucks & I really do pray that none of my sisters ever have to go through this again. It's bad enough dealing with the leftovers that bc gives us....but we're alive and that's what's important. Love you all...school ended and now I'm off to play with grandbabies. OH...Mon with plastics, Wed, sentinel node setup and pre-op, Thurs, the 29th surgery. Moving fast!
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Hang in there Ronnie. Eventually we will be cured of this wretched disease
I'm still on xeloda. got one little bitty skin lesion left. I've done a whole body cleanse while I'm on my 11 day break. I have acid reflux that burns like hell fire........and i cant breath well. not from mets, but from damn acid reflux. and gosh darn it......my jalapeno pepper plant in the garden is FULL OF BLOOMS....... makes me wanna yell F&*^ repeatedly and kick the dog.
Just thought I'd check in and let you know I'm still above ground.
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PamelaJo - love the photo! Glad you're around and growing peppers - even if you can just smell them instead of injest them! I've had terrible acid reflux since chemo tx. Burp, burp, burp. How about some of those virtual cookies? Surely they don't cause indigestion!
RonnieKay - Thanks for sharing what's going on. Praying for strength for each of your upcoming medical visits and for your surgery. Love to your DH and family for being so supportive.
Jane - Now you've spoiled the surprise! Oh well. (So whose birthday am I missing that's on June 28?? - going to drive me crazy now!)
Patty - Jane's right - I not only want to hear about Vegas, I expect photos!! Especially of Jane on the zipline!
BarbAnne - Wishing you just that - a peaceful family summer.
Oh - and thanks all for the reminder to call and schedule my mammo. I'll do it right now.
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Dear all, It has been 2 weeks of using scaraway. It is supposed to show results in 10-12 weeks. But I see some improvement, softening and lightening of scar already. Shall keep you all posted.
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