Starting Chemo in JAN 2007
Comments
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I decided to switch pictures, too. Mine is from 2 weeks ago when we went to A Christmas Affair. This week during water aerobics one of the other ladies noticed that I have a slight wave coming in my hair. It's noticeable mostly in the back. Maybe I'll get a few curls after all.
I'm keeping Tina and her family in my thoughts and prayers. I hope she continues to improve. Thanks, Rebecca, for passing on the updates.
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Hi all,
I love your ideas-vacation together, book, Oprah!!
We should aim for all three.
We could brainstorm together at chat on Tuesday night.
I have one idea for the book:
Each of us have unique personalities that we have shared with each other and if any of you are like me, I am clueless what mine is.
I know I am imaginationless-lol. I think Skye wins on that trait along with humor. We could, with the help of you, Skye, and all of us together, perhaps at chat some night, find and describe our traits in a fun and at the same time, serious way. We could refer to each other this way throughout the book. Does that make any sense? I have no idea what I mean, but it sounded good when I thought of it.
Viddie -
My bad, I meant to write "Robbin's first post" and it came out "Jan's" - still claiming chemo brain.
Robbin, I'm glad you are going to try an alternative to the tamo, rashes are so not fun. - Skye -
Hi again,
Quote:
"I think it would be very cool to use our postings for a book, the profits of which could be donated to BC research." I agree, Skye. Our posts are our feelings and totally describe what each of us have endured this whole year. We have captured all our emotions in these posts: crying, laughing, despair, caring, sharing, and so much more and most important- HOPE, LOVE & FRIENDSHIP.
Tina,
Thinking of you.
Love,
Viddie -
Robbin,
There is a large study- STAR- that shows that Evista is as good as tamoxifen:
http://www.mdanderson.org/diseases/breastcancer/star/
http://www.webmd.com/breast-cancer/guide/20061101/evista-breast-cancer-prevention
Viddie -
You know, the book idea got me going tonite. I went back to Page 1 and started reading all over again, and I see how important we were to each other and how much fun we had. We almost made having chemo a game...a charade...we were tight!!!
Robbin, I've heard that tamo is a very "dirty" drug and I am sorry it's doing such naughty things to you. There are alternatives. Some women have oophectomies (is that the right word?)...they go through menopause early so they can take an AI. The AIs are supposed to be more effective.
I'm taking Femara and it's working out fine for me. But then there's the bone issue. I've heard that Tamo is good for your bones...maybe you can get back on it...good luck! Hey, what's going on with your social life?
Mizsissy
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Skye - I am right with you on the book vision. That's just what i was thinking.
Also - you can use chemo brain as an excuse forever. I knew who you meant...
RobbinJaye - I just have to say that it completely sucks that you were so anxious and hesitant about starting tamoxifen and now you end up with a rash! Doesn't that just figure. I don't know a thing about those other drugs, but I hope it gets worked out for you ASAP! Us pre-menopausal girls have limited drug options, I do know that.
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Wow I am in shock over the news of Tina...My heartfelt prayers are going out to you. I take a couple of days off of reading the posts and here is what happens.
I enjoyed my day off even though I feel guilty - Catholic guilt I guess. I'll pay the piper tomorrow when I go back. Now I think I cracked my tooth on some popcorn at a basketball game tonight - hope I don't need a root canal too.
That seems like a little issue with what Tina and her family is going through. My brother just called to say his wife (who had breast cancer 16 years ago and has 10 kids and took Tamoxifen way back then) needs a kidney transplant and is having it on 12/12. Her son who is in the seminary turned out to be the best donor. It makes my work problems seem minor in comparison.
Skye, 9 does seem like a large number but I've heard of that. It just seems complicated when you have to get everyone together. My DS is having 6 and I thought that was a lot. They are suppose to be having an engagement party on 12/28. Now we find out there is an important college football game that day at 5 - so we know what the guys will be doing at the party.
Robbin, I hope you get some answers on your new drug.
Hugs
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Hello everyone,
Thanks for the update Rebecca. I hope Tina continues to improve by the minute.
I love the idea of a book, and Skye it would be Devine if you'd be the author!!
I just want to make sure we have 1 chapter on "Turtle Faces"!!!
Robbin, I hope the switch gets rid of your rash.
Hugs to all....look forward to our chat on Tuesday nite, should be rampant with ideas for our book, our trip, meeting Oprah...hahaha.
Be there or Be Square on Tuesday.....9:00 ET, 8:00 CST, 7:00 MST, and 6:00 PST.
Joni
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Ok, first things first....
I think we should name ourselves "The Campfire Girls" in honor of our first post. We never did make it to go camping, but we certainly have been sitting and telling stories around the campfire for the last year.
I have my dreaded mammogram this morning....almost exactly a year after I had my very first one. I am sure that it will be normal in the end, but because of my implant and all the scarring from my various surgeries I am sure that there will be much squishing and closer looks etc. I am so not looking forward to it. I hope they do not pop my implant...that would be a real drag.
No time for a long post this morning, I have to get the kids up because my appointment is for 8:15 and I have to ferry them to their various destinations before I can go....
Hugs to all...and particularly to Tina and her family. I hope she had a nice visit with her children yesterday....and I hope they are not too freaked out by all this!
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Good Morning All,
Rebecca, good luck with the mamogram. I had mine too and it is scary, but you will be ok. I am so glad the mam, first of two crowns, and the sigmoidoscopy are behind me. One more crown, then no more med appts (I hope) for a while.
I do have a question. Those of you who had a mastectomy, can you sleep on the affected side? I know there is controversy about this re lymphedema, but what I mean is can you comfortably sleep on that side? I find it painful, and I wake up sometimes and find myself on that side and in pain. It seems to affect the breastbone area. I am wondering if perhaps there is too much tissue missing .... sleep is an ongoing issue with me anyway. I started taking melatonin to see if it helps. My friend, whose son has autism with sleep issues, swears by it. I can fall asleep but wake up around 2 am and have a hard time falling asleep again. Such a drag.
By the way, Skye, how is your breastbone pain? And how are your arms?
I do think we should try to make chat tomorrow, we have a lot to discuss. I read everything I could find when I was diagnosed, and I think a book like we are discussing would have been so helpful. I was thrilled when I found this board. My schedule is such that going out at night to a support group wasn't feasible, I knew no one with bc, and this group meant, and means, so much to me.
I hope Tina is getting stronger. And Rebecca, you are right, I hope her children are not too frightened. Poor sweet Tina, we are thinking of you.
Melia
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Joni, just a quick note to tell you that we are all with you this week too, as you go thru yet more tests. I feel guilty praying for you to have arthritis! You are a brave, positive lady, and we all are walking with you every step of the way. Keep us posted, please.
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Melia, in answer to your question about being able to sleep on the mastectomy side, that would be both sides for me, but I sleep on either side comfortably. For that matter, I can even sleep on my stomach. I'm not sure what would be different about having a unilateral mast., but no one ever told me not to sleep on my side, so I do. Sounds to me like you need some Ambien to keep you asleep. Or you might ask about taking Neurontin at bedtime - an off-label use for that is for sleep. I had been taking it for several years before the bc business came up. Non addictive, works for 8 hours and then is totally gone so you aren't cloudy, just seems to give you a good restful sleep. Most docs don't know about that use for it, but when I was depressed the psych doc gave it to me because I was afraid to take a sleeping pill, and it works like a charm.
Joni, I definitely agree with you about having a "Turtle Faces" chapter. I faced lots of those this weekend at dh's family Christmas party. All these good people who have been sending me cards and praying for me over the past year, which I appreciate so much - they gave me the pity looks, the scrutinizing looks (is that her real hair?), and lots of stories about friends who had bc and then it came back!! Wow, thanks for the input.
Rebecca, I'll be thinking of you today and hope the proceedings aren't too uncomfortable. I'm sure you'll have good results, and it will be so great to have this behind you. Joni, as Melia said, we are all with you this week too.
Tina, today is your heart MRI I believe, and I'll be sending thoughts and prayers that everything goes well. You are constantly on my mind, and it will be so good when we can hear from you again. You are missed so much.
Must get dressed for work. Will check in later, and definitely plan to be here for chat Tuesday night.
Hugs to all.
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Rebecca - Good luck today.
Melia - I can't sleep at all on the mastectomy side. Even laying on that side breifly is uncomforable. Most of the discomfort seems to be where my drain was.
Joni - please remind me when your tests are and when you are expecting the results?
Tina - hugs and good thoughts to you and your family!
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Rebecca, thinking of you today getting your mammo. It'll be over before you know it!
Joni, sending you positive energy all week getting your tests!
Tina, hope you are progressing and the MRI goes well today. We miss you!
Melia, I can sleep on my mastectomy side with no problem. Although I do occassionally get pains on that side, even a year later, but that has nothing to do with my sleeping.
Mary, hope your tooth is ok...you really didn't need that!
Debbie, nice new Avatar!
I don't want to be square, so I'll bring my laptop to the Inn tomorrow night, I'm pretty sure they have free wireless.
Ally had her first snow day today. It didn't really snow too much, but a lot of sleet and freezing rain at the time the buses would go. She's still sleeping!
It's weird being one week before my surgery. I woke up this morning saying 'this is the last Monday I'll wake up with only one breast'. Scrambling to get everything done at work, at home and hopefully getting my mom moved out. busy busy busy!
love and hugs,
Lynn
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Hey Ladies,
Rebecca, Campfire Girls is a great name for our group. I do think we need to honor that first post of Robbin's (got it right that time). I always remember the TV commercial from years ago for those other Campfire Girls ..."Sing Woheela sing woheela, peace..health..love!" very appropriate for us.
Waiting for the daily update from Tina and Paul...we are all still here with you, girl!
I have a little collection of other bc books I will go through, but so far I think we would be unique with posts that tell our stories. There is one I like called "Lift" which is many tips from different women online but only related by subject, and Crazy Sexy Cancer Tips has a small group of bc survivors who tell their stories but neither one quite hits what we would be doing.
Lynn you are in your final countdown, and that is exciting. So you'll be getting a new "girl" for Christmas. :-)
I'm still getting the chest pain...from what I understand I probably have a chronic case of costochondritis which may never entirely go away. But it's not as bad as it was, especially if I avoid making too many of the movements that I now understand aggravate it. My arms still hurt too but not as extreme as before I went off the Simvastatin a few days ago. The doc now wants to start me on Zetia instead, so I will give it a try. The high cholesterol is hereditary in my case.
Melia I agree with Mel on the Ambien. I've been getting very good results with it.
Well it's Monday, back to the workaday world. I will put Chat on my calendar so I don't forget this time. - Skye -
Well, my mammogram was clear. WHEW! I did not realize how nervous I was about it until it was over. It was not as uncomfortable as I was fearing given my implant and so on, although the tech DID have to manipulate my implant to get it out of the way. yeck. I have an MRI next week then I am done with scans for a while.
Melia, I can sleep comfortably on my mast side. It felt strange for the first few months, but now I do not have any problems.
Wow Lynn...your surgery is really coming fast! So exciting!
As soon as I get any info about Tina I will surely post it....In the meantime I have papers that need grading so off I go....
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Wonderful news Rebecca. Although the whole procedure sounds very unpleasant. I hope the MRI is just as clear.
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Should we set up a seperate (by which I mean private) discussion group to work on the book idea?
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Campfire girls...hmmm, I'd like the name except that it sounds an awfully lot like the name of another group here that you don't remind me of AT ALL...what about "Breast Friends" (or has that already been suggested?) OR "Bosom Buddies"?
I think a private discussion group is a great idea. It is easy to set up in Google groups.
I think the fact that we went through chemo together at a time when chemo drugs came into question is a very interesting part of this. Many of us took drugs that are becoming controversial...maybe the book might call attention to some of the issues in medical research and practice that need attention. I am not suggesting that we should attack medical research, but I think the approach that researchers take, this kind of blind trial and error way of assessing drugs without understanding how they work, should come into question. There are other approaches to scientific research, more emphasis on qualitative rather than quantitative data. I am quite familiar with problems in these approaches, because they were a big issue in anthropology, my doctoral field.
It really is a kind of travesty what some of us were subjected to, which some think now may have been needless, especially in light of what is happening to Tina now.
Mizsissy
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Rebecca - congrats on the clear mammogram. It's nice to get that one out of the way. I have a breast MRI in a couple of weeks, also looking forward to crossing that one off my list.
Melia - I sleep on both sides pretty well, but since the mastectomy last year I starting to sleep on my back quite a bit. I guess because I had the drains hanging down, it just was more comfortable to sleep on my back.
Tina - thinking of you and sending all the positive wishes your way, straight to Ohio.
Joni - also wishing you the best of luck this week with all your tests.
Pretty quiet here. Yesterday we had a wicked storm, probably the one Lynn and you eastern ladies are getting today. Last night it rained and then froze up over the snow, so now the roads are quite icy. I think today will be another day indoors for me.
And as Skye said, it's back to the workaday world...
Have a great day ladies.
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Good Monday morning, ladies!
Tina, thinking of you and your MRI. Actually, I've been thinking of you all weekend - saying prayers and sending positive thoughts.
On sleeping on the mastectomy side (and I was never warned against that either) - It took me months, probably 5, before I could sleep on the right side. It was just way too uncomfortable. Now that I've had the left side done I realize that it was related to the axillary dissection. I'm already able to rest on my left side if I prop myself up.
But sleeping is not easy. I wake frequently, have to move frequently or joints start to ache. I miss the days of a deep soothing sleep.
I think another chapter in the book should deal with our dreams. That was awesome to read those stories. S-p-o-o-k-y....
And can I say the idea of the book is so exciting. Maybe the title could be: BFF - Breast Friends Forever.
Yea, Rebecca, on the mammogram news! I can't imagine what it's like with an implant.
As far as a vacation together which sounds wonderful: I've never been interested in a cruise. But I love the idea of renting a big house on the water where we could sit and eat and talk and move about as we pleased. However, I'm up for possibilities. I have a very dear friend who's a therapist and she always tells people: "Go. Grow. Enjoy the adventure." After this last year, we all ought to facing forward and ready for new adventures.
Well, I'm going to go soak in the tub awhile and read the latest Nora Roberts book.
Warm thought to all....(really, WARM thoughts for all!)....
Cindy
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Caya, Can I use your OY? I woke up this morning with a very swollen right hand and arm.
I put my compression sleeve on, Oh I am so scared of Lymphedema! I was using my right arm Saturday preparing a wall for new plaster and paint in the dining room. I have a feeling it was not a good thing. I love the book idea, where ever I can help count me in.
Viddie, I don't know what I am either. So many of you have talents and I am still trying to find mine. I'm good at cleaning, very thorough, does that count? LOL!!
Tina!!!! Miss you, get better and get outta there!
It is sooooo cold here and grey and gloomy, I wonder all the time.."I live here WHY???" Blech!
I see the Oncologist Friday for my 3 month check. I hate going there, it is such a sad place. I'm already feeling anxious. I don't want to see the chemo room or any of that! It is not a good place. I need to get all this out of the way now though, Come January my HSA starts over and my deductible is huge! Bummer.
Jeff's shoulder is still bothering him but not as severe, thank goodness. He was finally in a good mood yesterday. I know pain can make you grouchy, but yikes he was a grizzly! Even the dogs avoided him, LOL!
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Nancy - permission granted to use OY!!
lol- xo Caya
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Hi all, I'm back from my visit to my Primary Care doc for my annual check up. She poked and prodded me a bit, but I made it through. I got 3 vaccine shots, Flu, Pneumonia, and tetanus, and the lab girl drew 3 vials of blood for the lab tests. Thursday I get my Mammogram, next week I see the rad oncologist and the week after that I see the med oncologist.
December is shaping up to be a busy month with all the appointments, lunches, and the shopping trip to Old Town Spring (near Houston) for 2 days next week before I see the rad onc. I hope I find a few more things for my hubby; he has about a dozen things for me, but I have only 3 or 4 for him. It is so hard to find something for a retired guy with no hobbies who isn't into sports. If you have any bright ideas, please let me know.
I hope you are all staying warm and well.
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Hi all,
Rebecca,
Congratulations on your clean mammogram. That is such great news. I also love the appropriateness of 'The Campfire Girls." When we finally meet, we will have to have a campfire, even if we have to "improvise." I can imagine all of us sitting on a floor in a circle holding hands just gabbing for hours- all insinc with each other. I can't wait to meet all of you. We have to make it happen.
Melia,
I only had my surgery 4 months ago, so I still find it a bit uncomfortable to sleep in my sides, even with my Diep cushion. I can sleep on my sides easier when I put two pillows under my head.
Nancy,
I hope you and Jeff feel better soon.
Joni,
Good luck with your tests this week.
Lynn,
I had the same thoughts before my surgery. I even tried on some of my clothes thinking how different and better I would look after surgery. I was right- my new perky B-C breasts are a big improvement from my old droopy DD ones. And as an added bonus, I LOVE not wearing a bra.
It has been a very quiet day here- just catching up with the usual chores and wondering what to make for dinner. I love rainy days , especially when I do not have to go out.
Tina,
You have been in my thoughts and prayers. We miss you.
Viddie -
I meet with my surgeon on 12/6. I will probably be starting chemo 1/07 as well. Great luck to all!!!
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carstell - Our group started chemo last January. You are welcome to post with us and ask any questions you want. Hopefully there will be a January 08 chemo group starting soon (if not just jump in and start one).
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Rebecca, whew! Celebrate the clear mammo (insert happy dance)! Taking all the good news we can get here and running with it! I'm glad the implant didn't cause extra pain, either.
Viddie I agree I like Campfire Girls too. I think it has a positive and fun association with the young girls association and yet we all know the meaning it contains for us.
Jan, yes, a separate group might be best for working on the book. You mentioned you'd be willing to go back and start pulling quotes and posts...I say go for it. Need to start somewhere.
Carstell, those were almost exactly my dates last year at this time. I live only an hour away from you if you want some local support.
Tina, still thinking of you every minute. - Skye -
2 unrelated random thoughts:
I think we should completely ditch the idea of a get together for now. Let's focus on the book. Then when we get it published we can all meet for the very first time as a group on Oprah.
Just kidding.
I just received an email message from my the woman I've been chemo angeling (that's a word right?). Recipients are not required to respond, and I haven't heard much from her. But in her email she was very kind and appreciative. She's also suprised at how well I've been able to match my gifts to what she's going through.
Of course, that's very easy since she's my age with a similar diagnosis and in the midst of chemo. Pretty easy to remember what she needs...
Anyway, I'm just thrilled to have heard from her in a positive way.
I am really worried about Tina today. I hope we get an update soon. I'm afraid that no news might not be good news. We are all thinking about you Tina!!
Lynn - what day and time is your surgery?
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