Starting chemo January 2009?

  Hello ladies. I've been checking in frequently to see what's going on in everyones lives. So glad we're getting back to normal.

  For those of you who have gone through surgery recently I hope all is well. Take care, rest, enjoy the summer. For those of you who are going to have surgery do the same!

  Lisa- I viewed your video and voted for you. Good luck!! So far you are way ahead. What happened with the family portrait?

  I'm so sorry to hear about Malcolm. I hope he doesn't have to wait too long.

  I met a woman last week who was just diagnosed. She had so many questions and just couldn't believe it. I talked with her for quite some time. I told her about this website and how it helped me get through everything. She goes to see her surgeon this week. I'll call her next week. It was unnerving to see the fear and uncertainty in her eyes.

 I sometimes find myself wondering what the future holds for me since I now have a history of cancer. I wouldn't allow myself to think about that while I was going through treatments. I went to the Hotel Hershey for a massage last week and on the form they ask your medical history. It felt strange marking cancer.

  We're going to Brigantine NJ tomorrow for a few days. My sister in law rents a house in Brigantine and their family goes down for the whole week. We go for a few days and their friends go for a few days. It's nice getting together. We'll go to the casino and try our luck. I enjoy any time away from work!

  I'm sending my best to all of you.

Hi Jewels,

 Came home form the hosipital today after a one night stay.  As most of you said, the mastecomy  wasn't that bad.  If fact, I have very little pain right now, just a kind of tightening and pulling.  The hospital gave me one of those softee camisoles and they are great.  I think I will order more since they are very soft and at least they give an illusion of a breast when I'm wearing loose clothes.  I'll get a prosthesis after I heal.  Looked at "new figure" and wasn't tramautized so I guess I'll be alright.  Just will take some getting use to for a while.

 Thanks for all your advice and words of encouragement.  Couldn't have gone thru this without all your kind support!

Hawaii: so happy to hear things are going well

Jess: welcome on the tamoxifen train.  I've been going on 4 months now, its not a bad ride at all.  I hear you on the work thing.  Back in full swing and not daring to take any time off because in everyone's head you've been off for so long.  (SURE that counts as a vacation!! Most expensive one I ever took)  I listened to the advice of not letting yourself get distracted--one task at a time only.  And lots of notes and wrote down what to do each day and prioritize.  And have someone double check anything important.  Also fatigue, when you're tired you can't break through the chemo brain fog.  Just go home.  I'm back taking more meds at night to sleep--reminds me of being on chemo again yeechhh-but without sleep can't function at work the next day.  The first day I sat at my desk and felt overwhelmed and unable to function, but it got better.  I can honestly say that I think the regimen and structure at work and the need to think and use my brain muscles seems to be helping my chemo brain get a little better.  One piece of advice from someone who has been there.  If you're like me, the hot flashes started in about 30 days into the Tamox, sweating profusely non stop at work doesn't help chemo brain, neither does not sleeping at night because they wake you up.  Don't be afraid to ask for effexor or neurontin or something.  They started me on neurontin to help with the neuropathy too.  As far as I'm concerned that drug is a wonder drug.  

Finally at the point everyone says oh you cut your hair short, instead of staring at me like I'm a mutant.  Just smile and say yes.  Want to say, are you kidding me?  Ya think I cut my hair this short and shaved off anything resembling bangs on purpose?  Oh yeah, and gave myself a perm like it was the 70's and encourage it to curl over my ears because that's the spot that seems to want to grow the fastest.  Heck yeah I spent thousands of money out of pocket for this beautiful doo.  But I don't say it, just smile and nod.   

So bummed for your DS hotbolt.  Wish they could have at least given him a phone call.

Hi ladies, I'm back from Scotland and England and I had a fabulous time!  Edinburgh is like a fairytale, I just had the best time there.  London was great but I could never leave in a city of 10 million people, it's not for me, but the castles were great and I saw the show Billy Elliott there and it was awesome, I highly recommend that show to anyone that gets a chance to see it where you live.  I'd have to say it was one great 'getting through chemo and getting on with my life' trip.  All those times in chemo, my hubby kept saying when this is all over we're going to Scotland and I felt really good about that.  Now, it has come and passed.  Life is moving along for all of us isn't it. 

Have a great weekend jewels!!!

Jill

That is wonderful , Jilly.  I so love Scotland.  I am glad you had a great time.

Are any of the Jewels going to be having reconstruction in the future?  I am seeing my plastic surgeon for the 1st time on Nov 26th and I don't know what to expect at all.  I had the left mastectomy last November and they said they would do reconstruction on the mast side and a skin-sparing mastectomy and reconstruction on the healthy side at the same time.  If I am getting implants put in, is it assumed that I will be having tissue expanders put in first?  I'll have to check out the reconstruction boards and educate myself a little more on all of this. 

Hey Jewels:

Back from vacation. Had a great time touring the Northwest and being a tourist with girls and DH. Ate lots of great food, but focused on salmon as the fishing is closed here in Calif. due to low fish counts--and I LOVE salmon. Had the best ever in Vancouver.

Went wigless through entire vacation! Visited friends in Ashland, my husband's pizza restaurant investment in Seattle, suspension bridges, shops, parks, gardens in BC, various Twilight locales on Olympic peninsula (if you have a teenage daughter--you probablly know those books!), saw whales, rainforests, giant redwoods. Great time!!!

 Now back to reality. Have port removal scheduled for tomorrow and have cold feet big time. Keep thinking What if I need it again? Hate the thing, though. And still wondering if I should go off bisphosphonates trial to zometa. I just am the worse decision maker, and feel like I really need to trust my onc.

I start taking classes again 8-25 and then teaching 8-31. I still need to meet my new principal and my co-teacher. I'm not ready! I'm finishing up some publishing company work that I should have finished months ago but cancer tx got in the way. My new principal asked for a head shot. Said that's a dilemma--wig or not. Told her I had cancer. She was VERY supportive, and said she's there to support my  health. Felt great. Also told me another teacher at the school had chemo and surgery last spring, so I won't be alone.

Great to read all your posts. Lots of great news about treatments and life. I too am still feeling tired, especially after my vacation! Some numbness still in feet that comes and goes. Arm soreness still, which I think might never go away. Growing hair, though! Can't believe it's been almost a year since the first lump was found.

You know.. it sure does make me happy to read about so many Jewels traveling and on vacation and having fun again!!!! Woohoo!

Welp, I am having an ooph on Thursday morning at 7:30!  Three months of Lupron injections and my estrogen level is that of a premenopausal woman.  Of course, everybody is saying "oh, that doesn't happen often.. and this is very surprising, etc. etc.".  Ugh... I am just the Queen of Estrogen I guess.... so out they come.... I had an ultrasound today in preparation for Thursday.  Gyn wanted to make sure there are "no surprises" before she goes in.  I just want them out and I want to be back on Arimidex and I want it to work. 

Jilly, I have been reading like crazy about reconstruction lately.  I had one consult here in Indiana and implants are a no go for me (at least on the right side) because I've had previous rads.  At least that's what this guy said.  I was told there isn't enough belly fat for a TRAM and the PS started talking me into a LATflap (back).  I sort of got the picture that I wasn't an easy case so I started reading on here.  I keep reading great things about NOLA and have sent my paperwork in for a consult with them.  They have all my paperwork and photos (which I had to email them).. now I am waiting on a call. . I am thinking they are going to suggest a SGAP for me.  .  I still have no idea what I'm going to do and when..if insurance will even cover reconstruction if I travel there..... but I took the first step and I will have a consult at least.  Anybody with any experience with NOLA or hear of any success stories from there?

Holtbolt:  Prayers for a successful surgery and easy recovery.  Keep me posted.. I'm right behind you.  Aug 31.    

It is absolutely wonderful to hear of all your travels and "normalcy".   I just returned from the PGA Championship.  Three days of walking and watching golf.   The tickets were our family Christmas present... the excitement of the gift was overshadowed by my impending chemo,,, I said at that time, when we are at this golf event, I will be done with all this cancer treatment and back on my feet -- it was a milestone for me.. to hike that course and feel great.

Feeling good sure feels good!   Having hair again will sure be nice.  Seems like haircuts never lasted long -- now it seems like I will never need one again.  Have to be patient.

Am coming to terms with the BRCA2 status.  Get the ovaries out and surveillance every 6 months is my plan for now.  

Take care Jewels...   

Got my port out yesteday. I almost walked right out of the preop area because I just wasn't sure I was ready to let it go! But I did it and am so glad I did. It feels like another step away from cancer. It hurt alot yesterday but is better today. The interventional radiologist told me that they do it as a surgery here but it could be done right in the drs. office with a local. I got some narcotic and anti-anxiety, but I asked them to cut the dosage. I can take the bandage off today and shower.

So I felt up to taking a friend and her daughter (and of course my dear youngest) out to dinner and to see Julie and Julia--very cute!!! We found our old copy of the Mastering the ARt of French Cooking (my husband's MSW grad gift from his parents!) and opened right to the page of the boned duck (you'll get it if you see the movie)!

I go to genetic counseling today--seems like a year too late, but I'm curious.

Holtbolt--Sending healling thoughts for Thurs. I bet you'll be glad to get this next step out of the way. Interesting about your estrogen levels. I asked my onc if they test blood levels for me and he said no. Why not??? How do I know the Arimidex is working? (and I guess we can't rely on mega side effects)

Plutz-I'm on the study, and they skipped the preg. test for me. Really--absolutely no need to do one, sadly. Also didn't do a ct scan, but I sorta wish they did just to keep me from my obsessing about possibilities. Do you know what drug you get?. I'm still debating getting off and just doing Zometa. Going to talk with onc again about it. What an ordeal with the car!

So many of you doing reconstruction. Hope it goes well! I see my surgeon tomorrow too, and I guess I"ll ask but I really don't want more surgery except maybe to get the other one lopped off.

Hi Jewels,

Glad to see everyone taking vacations and getting back to "normal".  I got my drain removed on Tuesday.  What a relief.  It was starting to hurt.  When my BS removed the bandage she said there was rash from the bandage and some irritation at the site.  Feel much better.

Since I'm postmenopausal I will be taking Femara.  Is anyone else taking this?  Been wondering about the aches, fatigue and hot flashes.  My onc asked me how my energy level was and I told her it seems to be getting better but I guess when I starting taking this pill I'll be tired again. 

Plutz and Berkleykim - I'm also looking at participating in a biophosphonate clinical study.  I've been reading about the likely side effects and wandering if I want to deal with those side effects as well.  Although the study has shown some positive results so I'm undecided about what to do.

Renrel: Nice photo.  Good to put a face with a name after all these months!

Phyllis:  Rest when you can.

Holtbolt: hope you are feeling well post-op!  Welcome to menopause - for sure.

BerkleyKim: I'm on arimidex since May.  I think the side effect profile is about the same for all the AIs.  aches, hot flashes and fatique -- I had all three, but the good news is, they have all subsided significantly with time.  I am in the bisphosphanate trial - ibandronate every morning.  There are few SEs with this.. a little upset stomach, but I just drink more water with it and that helps. It is a little inconvient to have to take it on an empty stomach, first thing in the morning and not eat anything for 30-60 minutes afterward....and you have to stay upright for at least 30 minutes after taking it.    But it's becoming part if my routine.  As I understand it, the AI is at least as important - if not more important than chemo in decreasing recurrance and the ibandronate is protecting my bones from mets. So I can live with the SEs and let's face it, these SEs are still way better than chemo SEs! 

Enjoy the rest of the summer!  

Carole--Welcome! Never too late to join us jewels. The group is my BIG support! Glad you're doing well post chem and rads. I'm on Arimidex and feeling some SEs from it, but I'm adjusting after 2 months. Good luck!

KT- and Hawaii-I'm glad I'm on the trial--I want to do everything that might be useful to keep the beast away, especially with my positive nodes etc. You're right about getting a routine for taking the ibandronate. I'm hoping it won't be hard when I start back to school next week. My onc told me to start taking the Protonix again. I don't really have heartburn but feel like something's stuck in my throat, and he feels that it's probably from the ibandronate. We talked again about Zometa vs the others, and I feel better about going this route at this time, and he promised me that if he changes his mind in favor of Zometa he'd let me know.

Renrel--cute hat, cute you!

Plutz-glad you're daughter is close to home. That meant a lot to me last year, as she took the train home the day after my surgery to see me. My poor son had to worry from afar (or maybe he didn't!)

Saw my bs, onc, and eye doc today (yeah, no cataracts from the steroids!). See the rad onc tomorrow and follow up on the port removal. My onc is so low key, which I guess is good, but very thoughtful. Blood work looked really good and counts are back within normal. Get the tumor marker and Vita D results next week. My previous CA15 was within normal range, but my vit D had decreased during chemo. Oh--and saw genetic counselor yesterday. She'll give me an order for the blood test next week. She wrote a book on breast cancer risk assessment, and gave me a copy (pretty old copyright of 2000), but she is very calm and reassuring and realistic.

HUGS!!!! We're almost at 100 pages!!!