Starting Chemo in September?? where are you ladies

paxton · January 2008

I haven't felt very good about how I look, but I see some hair and I put on some makeup. So here is the latest look.

bluewillow · January 2008

Hi Paxton,

You look GREAT! I see a lot of hair and you look so HEALTHY! How are you feeling after your radiation? And what did you say you were using on your skin?

Mary Jo

Methusala · January 2008

just checking in.. funny, I've been thinking alot about dying lately too, so I was very comforted by some of the posts on here. Why now? who knows.

I have myself convinced the cancer is back in my other breast. I can't get this feeling out of my head. *sigh* what a life.

trigeek · January 2008

Pax you are truly beautiful(honestly ! ) you have very delicate facial features ! I am jealous of your hair.. 1 week after chemo mine is like ...

hair

Yes I have decided to take weekly pictures of my scalp(my facial features without any eyebrows/eyelashes is not that appealing) .. all is coming out white though.. arhh....

Methusala I also had an uncontrollable crying spell in bed at 5 am this morning 1 week after finishing my chemo(did not have anything like that during chemo). My next step is not determined yet (need to get rads or surgery beginning of February) I have heard that it does eventually get better .. I watched Robin Roberts video on GMA thread she was also asking the same things.

Last night we had our book club meeting and one of my friends disappointed me soo much.

There was a book suggested (forgot the name some buddhist book) for our next reading and she said ' That book is not appropriate for us at this time' .. and just stopped without elaborating further giving knowing eyes to others. I peeked at the book, it was about accepting death and such.. I got really mad. I do not want to be treated differently and walked on egg shells about anything !! I need to be around people who can treat me normally so I can feel normal !

I think continuing weight gain is not helping. I will be starting to log my food and activity in www.fitday.com and get a handle on things.

Have a great Sunday .. MJ granny how are you ? hehe...

Oh and here is a picture with my running partner of 7 years.. after our first run after chemo !

dog

Live Deliberately !
Dx 8/3/2007, ILC, 2cm, Stage II, Grade 2, 2/6 nodes, ER+/PR+, HER2-

paxton · January 2008

I don't have any eyebrows (or eyelashes) either. I think I look goofy. I almost would go commando with the head but I'm not quite there yet and without the eyebrows I just can't.

That's weird about your book club, tri. They're more likely the ones with the death problem. I've been out to the bar dancing a few time lately and I'm getting overwhelmed by all the people I know and don't know who jabber on endlessly and hug me telling me how strong I am, blah blah. I just say, first what choice do I have if I want to live. Second, we're all going to die. That part makes most squeam which kind of makes me chuckle to myself.

But I've been freaking out about death at times, too. I'm of course worried about the cancer coming back. I'm still emotional. Seems like when I get off the rads table I'm tired and crabby. We went out for supper with a few couples last night. I wanted to run out crying but we rode with our friends. We went to the bar after and I still felt the same way. But the one friend hasn't been out in forever because of the baby so I felt I should be a good friend and help her have fun so I started drinking white russians. I ended up having a really good time and got some AMAZING bf time.

Its nice to have the weekend off now. I don't want to go back. My skin feels like its going to start getting irritated soon and I've got a ways to go with tx. Arggg!!

I just use facial lotion to keep my face hydrated and udderly smooth cream on my body. I don't feel "healthy"

mariettaj · January 2008

Cute doggie tri!

I feel like my period wants to come back...I've had little crampy feelings all weekend....I've been so emotional too...Suddenly I feel like I can deal with hot flashes...I don't want my period back!!!

I'm back to radiation this morning. Week 1 went really well.

Have a great day all!

Marietta

trigeek · January 2008

'Goofy Pax !! ' Good one telling them that we're all gonna die.. yikes what a reality check for them. And of course you will not feel healthy I think of rads as chlorox that is being poured on our body. It cleanses right ! but burns too.. good news is we are STRONG and cancer cells are weak ( I did not come up with this .. I think it was in one of the sleuth of bc books that I read ) cancer cells are stupid little things who think they are immortal ! Rads put them in their places.

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Tried the chillow ( chill pillow) for the night hot flashes. First night my head was cold so could not use it ( well duh we need nightcaps to keep our bald heads warm right ?? ) but last night I used it all night and did not wake up with any hot flashes until morning when the pillow was warm. Lying on my back keeping the neck area cold did the trick.

If anyone is having as hard time with the night hot flashes(interesting that I do not get them during the day) as I am might want to check it out from http://www.hystersisters.com/.

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I still have not made my mind regarding removing of additional lymph nodes and have asked for a sign to appear for me to make a decision. I am beyond frustrated to the point that I do not care whether I get the surgery or not really so I will not call the surgery schedulers if they do not call me I will not get the operation , but then I need to schedule for the rads to start.

.

The study that was addressing the exact situation that I am dealing with had been closed.. arghhh.. emailed the study coordinators to share any additional preliminary results they might have,maybe there will be some insight from them.

The studies were :

ACOSOG Z0011 and S9927.

Preliminary Outcome Analysis in Patients With Breast Cancer and a Positive Sentinel Lymph Node Who Declined Axillary Dissection

Send me some vibes girls so I can make up my mind, the clock is ticking and I need to reach an action plan soon regarding surgery/radiation.

livinginboji · January 2008

Hello Ladies,

I just finished reading a book, chemo brain...can't remember the exact name or author! Duh! Maybe should have posted after I found the pertinent info. Anyway, it is an excellent book about life after bc.

In the first couple of chapters I found some very good quotes and thought I'd share.

1. It is a strange disease indeed that leaves you feeling far worse at the completion of treatment than you did at the time of diagnosis!

2. Why waste a good day worrying about a possible bad day in the future?

3. Many women feel that bc has given them a second chance. Grab it and hold on for dear life!

I say AMEN to all three. If anyone is interested I will get the name and author info to you. It really is a good book.

Take care ladies!

paxton · January 2008

I can say yes to all three. I'm feelin em all right now, too.

I just had my one month after chemo appt with onc. I guess we're leaving my port in for 2 years because you guessed it, that's the most likely time for reoccurance. FANTASTIC!! I don't even know what to think anymore. I go from freaking out about dying (even if its years and years away) to freaking out about letting my guard down and having this reoccur to where do I go from here. I've decided not to even try working until I'm done with rads. I don't need the stress.

Bleh!!

trigeek · January 2008

Hey Living...

Can you get the name of that book, I got a chuckle out of #1.

Pax sometimes working ( if you can focus on work that is ) seems to help to get back into the swing of things.

Trigeek - closer to making a decision to chop the nodes/zap the chest.

mariettaj · January 2008

Hey Tri!

Good luck with your decision. I know it must be really hard. I can't remember if I told you that the Danskin Tri is out for me. My son is making his first communion that weekend. forgive me if I'm repeating myself, chemo brain seems to make me do that...lol oh well. Can't wait to check out hystersisters, thanks for the link, I feel like hot flash queen some nights. Took a pill last night and slept the whole way through for the first time in probably 6 months.

Marietta

bluewillow · January 2008

Hello to all!

Cheryll, is the book you read called "After Breast Cancer: A Common-Sense Guide to Life After Treatment" by Hester Hill Schnipper? I am reading that book now, the version with the yellow cover, which is not the updated one (the updated version has a pink cover). Strangely, there are parts of the book that are very good, but also parts that I find very depressing, discouraging, and dark, and got some mixed messages. Sometimes the author just puts it plainly that your life will never be good or fun after breast cancer. Then other times, she says one will be fine and recover completely. Cheryll, please don't think I'm being critical of your recommendation, because there are very good points to the book, such as the three great quotes that you pointed out. Another book I really enjoyed, and it is geared for those with Stage 1 and 2 cancers, is "Just Get Me Through This!" by Deborah A. Cohen. This book was totally upbeat, but the downside to it is that it needs to be updated to 2008. I found some great things in it though, along with lots of encouragement and real hope. I have found that just staying away from books, websites, etc., that I find scary or depressing has helped me not get down and feeling doomed. I guess that's the "head in the sand" way of living, but so be it. I cannot stand to visit the www.her2support.org website-- I have found very little encouragement at that website, certainly not like here! Another great book I just finished, really my favorite: Living Through Breast Cancer by Carolyn M. Kaelin, a doctor who is also a breast cancer survivor. It is very helpful and upbeat also. Just some of my thoughts and recommendations. I'd love to hear some more from everyone!

We are all very different in the way we handle our breast cancer tx and healing, and that is what makes us such great pals here! If I couldn't work every day, I'd have gone nuts and probably gone off the edge a long time ago. But then again, I have pushed myself a lot and am really feeling the fatigue now to where I need to take a break. So, it's perfectly ok to not work and stay at home and take care of yourself in anyway you can. And Paxton, you made perfect sense about not needing the stress of working! Your outdoor activities have helped you heal, and I've missed out on all mine because I've been at work!

Tri, my gut feeling is I think you should go for the node surgery and get all that out of there. Then you would have no doubts, and you will heal faster than you think. I sincerely wish you the very best of luck, whatever your decision. Let us know what you decide.

Marietta, Congratulations on your precious son's communion! I am with you on the chemo brain. Mine has gotten much worse in the past two or three weeks. Yesterday, after treatment, it was really bad. Taxol #11 hit me harder than any of the rest, and I was just wiped out. I think it's because I forced myself to stay awake during tx and not have my "benadryl nap". I was so tired I could hardly eat my lunch and didn't have the "up" feeling that I usually have because of the steroids. Maybe they forgot them all together!

Well, sorry this is so long and blog-like!!!! Gotta go now to have my echo to see if my heart is pumping sufficiently after having Herceptin. Hope it's a-ok!

Take care and hugs to all,

Mary Jo

paxton · January 2008

Thanks for the book references, mj. I'm coming into the life after BC phase. Like all the other ones, it sort of comes up and makes you all confused at first. But you just take a step back and think what would help me put a foot out. I, too, prefer to stay away from negative or scary sites, books, etc, once I've read what I need to know.

I do think working some is probably very helpful to keep you going. For me, the work I was doing was very physical so it just wasn't an option to stay. I don't feel comfortable going back even during rads because once my underarm and boob get sore, it still wouldn't be a good idea to do that job. To switch gears into another field or job is what I would find too stressful during all of this. Luckily I have enough stuff on the farm to keep me busy and its flexible to how I'm feeling.

Tomorrow bf and I are driving 2 hours to my genetic counseling appt. I have no idea what they do exactly so it'll be interesting. I'll keep you posted.

mariettaj · January 2008

Cheryll those are great quotes, thanks for sharing.

Hey MaryJo! I agree about that her2 website you mentioned. I went on there one night and ended up feeling a little freaked out. I avoid that topic even on this website. I hope you're feeling better soon. When do you finish taxol? The only real side effect that I am having from solo herceptin is a runny nose and a little body ache. At my support group I asked if anyone else experienced the runny nose and everyone gave me an emphatic "oh Yeah!!"...so I'm not alone or crazy...:)

I have my 7th rad tx today, so far feeling great! The water weight is coming off finally...still have chpmunk cheeks though...lol

Have a good day all!

Marietta

p.s. My son noticed that my hair is growing back and told me that it looks great but it still looks like a buzz cut gone wrong... Surprised

bluewillow · January 2008

Hi everyone!

I just got back from my echo test and it was short and hopefully sweet. It took all of 30 minutes start to finish and I didn't even get to finish reading the magazine I'd just sat down with. I asked the echo technician about what she saw, and her words were: "I saw a little something but your heart function was fine, and you do know that adriamycin can damage the heart" SO now I have to worry myself silly until next Tuesday when I talk to my doctor about it. The echo tests I've had in the past have been fine, and I feel perfectly fine, except for being fatter than I was. Anyone have a clue as to what they can find with an echo? Does an echo show up a heart blockage? I am determined not to worry about it until next Tuesday. I will be really pissed if that red devil has done something to my heart though...

Paxton, I can see why you chose not to work. All I do is set on my butt all day at a computer and work on school bus routes and student assignments and answer the phone, so it's not like I'm hurting myself. Ironically, I need a more physical job. You will get back into the swing of things when you're ready. In the meantime, enjoy your healing time. You are so lucky to live on a farm and be outside a lot. My lifestyle since chemo just stinks-- not outdoors enough! And good luck to you both on the genetic counseling-- let us know.

Marietta, I posted a question about the runny nose elsewhere here, and I thought it was the Taxol doing it, but maybe it's the Herceptin after all. Mine has been driving me nuts. It drips during the day and stops up at night. My last Taxol is next Monday-- YAY! I just hope the heart thing does not keep me from taking the Herceptin-- that is my biggest fear. Your son's opinion of your hair was funny!

Take care, all,

MJ

paxton · January 2008

I'm getting tired of this cold weather. I think we're suppose to get above zero in the next few days. I can't wait. I heard 30 by the weekend (wouldn't know what to do with that heat wave). And it was so light out last night. When we crawled into bed, bf said we should be out coyote hunting. A night hunt would be pretty cool.

I've been fooling around with putting a slide show together on my myspace page. Gives me something to do. If anyone wants to check it out sometime, here's the address...

www.myspace.com/paxton18064

trigeek · January 2008

MJ,

.

My oncologists nurse was VERY mad at the echo technician when I told her that the echo technician told me 'I should not be worried about anything' She basically said ' those technicians should shut the f.. up, they keep on scaring patients needlessly' I can not believe that she would make such a comment to you they are NOT supposed to do that. I would not make anything out of that comment, after all she does not have your previous reports !

.

And thanks for the input, I have decided to go ahead with the dissection but they gave me a surgery date for February 14 !!! now I have to fight them cause then the time between chemo and rads will be 8 weeks ! not good. Hard to schedule the PS, BS together since they will do axillary node dissection, port removal and expander exchange in the same operation.

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Looks like the hubby might be getting new boobs for Valentine Days .. too bad it is 2 days before the 1/2 marathon that I have been training for with a bunch of people..

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Marietta, congrats on the communion.. no worries you have a raincheck for next year if you decide to do the Danskin.

.

I started work but cannot focus on anything, I have a severe case of ADD it seems like.

Paxton the slideshow is soo nice, I especially like your pix 86 junior high pix .. the music is awesome too.

bluewillow · January 2008

Tri, I guess I put the echo tech on the spot by asking her if everything looked ok... and she told me she wasn't supposed to tell me anything "although the echo techs often know as much or more than the doctors do", which I thought was a strange (and cocky) comment... I'm not putting much stock in her opinion because like you said, she didn't have my previous results.

I also want to thank you for the website, www.fitday.com. It is great!!! Did you happen to purchase the CD also? I am considering buying it so I can install it here at home and on my work computer so I can really keep track of everything, all the time.

I wish you the best of luck on your future surgery and I hope everything goes very well! We'll all be rooting for you here!

Paxton, your website is very nice and I really enjoyed your slide show. I wish I was that talented. I hope you enjoy your "heat wave"! And yep, it was sure light enough out last night to go coyote hunting. I woke up several times thinking one of us had left our headlights on. I have to sleep in pitch-black-dark so I always dread the full moon.

Just thought I'd throw this in-- another good BC book that I have in my "library" is Breast Cancer, Real Questions, Real Answers by David Chan, MD. It is not depressing and was actually very uplifting for me. Dr. Chan goes more into the medical aspect of how chemo and rads work, etc., but in plain easy-to-understand language. And its copyright is 2006, so it's up-to-date already.

Well, gotta go- it's bedtime and I'm ready for it after the sleepless, moonlight night I had last night.

MJ

bluewillow · January 2008

I meant to add this regarding the echo tech at my echocardiogram yesterday: she asked me if my dr. had told me yet whether or not the chemo has worked on my cancer. I guess the strangeness of this question did not hit me until much later that evening. I'm wondering if she needs to change careers... hopefully not into the CIA or anything involving tact and confidentiality Surprised

I hope everyone is doing well today!

MJ

trigeek · January 2008

MJ,

I think your echo gal's brain got hit by u/s waves no wonder my nurse made the comment about the echo techs better shutting up.

I would not buy the fitday cd, you can just log on from work and enter all the data from any pc.Having the software actually will be limiting you to the pc that you have installed it to (did not look at the software and have been using the online/free version for years on and off)

Just read an article on the affect of rads on smokers and how it increased the risk of lung cancer for ever-smokers ( I had quit about 15 years ago but I gues it still applies to me)

http://health.yahoo.com/news/reuters/smoking_radiation_dc.html

Joy.. just as I made up my mind for rads now this.

paxton · January 2008

I'm home from my genetic counseling appt. I really had no idea what this was all about. They went over my family history and all my reports to discuss whether its justified getting tested for BRCA1 and 2 genes. They said I definately need the testing. It costs $3300 but my insurance covers some or all of it. I left my blood sample, but they're going to wait until the company who does the testing lets us know how much is being covered by the insurance before they go ahead.

The geneticist said I have about a 90% chance of being negative which means I continue on the course I've been on. If I test positive, they said I should have a db mast and hysterectomy. I was freaked to say the least. He did say I wouldn't necessarily have to do it right away especially if I want children. But still!!!

And my family members would also then need to be tested (but they're testing would only cost $300). If they tested positive, they would have to be aggressively tested for the rest of their lives. It would also help show where the gene was being inherited from so I could alert cousins and other relatives along that line to get tested.

But like I said, 90% chance I don't have this. HOPE HOPE

Deep Breath.....

Oh and they did some weird test where they measured my head (apparently there's a rare cancer linked to a big head ha ha). It was the first time bf has seen me bald but I felt ok about it. And I don't have a big head Laughing

Karyll · January 2008

Well my to be last taxotere was scheduled Thurs. I went today for bloodwork and they too one look at me and said no I am way to weak and sickly. They think I had an allergic reaction to the taxotere. They will want to change the tx so I won't have chemo tomorrow but will next Thursday maybe. I toddled off to my blood work and it came back fine, except my liver tests are all out of whack. I did not have the thought process to ask what that REALLY meant on the phone.. but soon as I got off the phone, the mets question really hit me. So I see onc on Tuesday to find out more I guess.
Thats what my wonderful news was today. Kinda throws you for a loop.

Karyll

clsd · January 2008

Hi ladies,

I usually post on Dec 07, but read through your posts often. You girls really have some super strong support for eachother, inspiring! Anyhow, just wanted to reccomend a book I loved, Cancer Vixen by Marissa Marchetto. True story of a BC survivor, with amazing wit and humor. A total crack up if you want to keep it light...

Paxton, I finally got my genetic test results yesterday, and they were negative, and I will pray for you to soon hear the same too.

Keep up the fight Sisters, FUBC, xo Cindy

trigeek · January 2008

Hey Karyll,

Don't immediately think mets, my liver tests also went out of whack towards end of Taxol and I madely made it to my last chemo guess the body can tolerate/cleanse only so much..

paxton · January 2008

Thanx cindy. I'm trying not to worry about it. I won't know for quite awhile anyway and with the 90% negative chance I'm just going to relax as much as I can about it.

Tri: hope things go well with your surgery. I bet it feels good to at least have made a decision.

Karyll: sorry to hear you're so sick. Hope you get through the end of chemo and feel better. And hopefully your liver results won't be something serious. Good luck!!

I think my period is trying to start back. That may explain some of the pms like emotions lately. I did pretty good yesterday considering everything. Bf gave me a hug before I headed off to bed last night; asked me how I was doing with all that news and then he told me he was in this for the long haul. This is huge coming from him (he's caring but typical nonexpressing it male).

I have rad tx#12 today. I'm going to try and go to the library without having to leave crying like I did on Tuesday. How stupid.

Have a good day ladies!!!!!!

bluewillow · January 2008

Hello everyone! I am at my daughter's house for a few days spoiling my brand new grandson, and I thought I'd give him a break for a while Wink and check in with you wonderful ladies...

Tri, I really feel that your body has already healed from the smoking damage of years ago. I have read many times that when one stops smoking, the body begins to repair itself immediately, so please don't worry too much about this. Have you showed the article to your rad dr.? I just have a feeling you will be fine. And best to you on your surgery.

Paxton, I wish you the best on your genetic tests. 90 percent is an extremely good chance you're going to be fine and won't have to worry any further about it. And so glad your bf gave you the extra encouragement and support-- you deserve it. Hang in there! We're all sure rootin' for you!

Karyll, I've heard it's common for the liver profile to be out of whack. I just bet your onc will give you good news on Tuesday. I just learned also that having an abnormal pap is common, and I had that scare a couple of months ago. If they're going to do these dang tests, I wish they'd be more careful about their wording and how they present the results. I truly wish that part of the money for all this pink crap that is being sold would go for legislation in favor of FAST test results and a wait of no longer than one hour. The waiting on the results and interpretations is by far the worst part of all this.

I finally got the official word from my onc.'s nurse today about my echo/heart tests, after being frightened by the echo tech. The nurse said the echo and my injection fraction test were both perfectly normal-- YAY, thank goodness that's one less worry! Now, I'm dealing with some slight depression, not really because the end of my chemo is near, but I think I am stepping back and looking closer at my life and what it has meant and what I would like to accomplish with the rest of it and I want it to really mean something. (not that I think I'm dying soon or at least I hope not-- I think this is part of menopause and aging too, not just the bc issue, because I was having these thoughts before I was dx'd) I've been mentally tired lately and need to have some fun to put the spark back into life. (of course, a new grandbaby has helped- I just need more sparks) I have considered asking for a mild dose of anti-depressants, but am very hesitant-- drugs like that scare me. Anyone else have any experience with A-D's? My sister and niece have both taken them for years and truly they are both fruit-loops now Surprised and I don't want to end up that way.

Take care, everyone!

Mary Jo

paxton · January 2008

Glad ur getting in some grand baby time. Hope that helps lift your spirits. I think all of us fall into slight depression here and there. I met with my radiologist for the 2nd time. He's this short Israeli guy and quite interesting. He sat down and said there's been reports that I might be depressed. He said, (in his thick accent) "I do not think you are depressed. I think it is the normal reactions to all the surgeries and chemo." I've barely talked to him so it made me laugh a little.

I was on antidepressants before all of this. I don't think its such a bad thing to go on something like Wellbutrin for awhile. It lifts your mood some and its fairly easy to quit when you want. Certain ones are easier to get off if you're planning on using them for a period of time. Just be sure to let your dr know where you are at and what you expect.

bluewillow · January 2008

Hi Paxton,

Thanks for your nice reply. Yes I am having a very wonderful time w/Mason and it's so nice to focus on something else for a few days.

I appreciate your info about the antidepressants. I never dreamed I would ever need them, but that changed w/bc. I would go on one as long as I could quit it without too much difficulty. I plan to talk to my chemo nurses on Mon. and my dr. on Tuesday about it.

It sounds like your rad dr. is very knowledgeable and wise and glad he made you laugh. That's what we all need more of-- laughter!

Take care!

MJ

bluewillow · January 2008

Marietta,

I posted a similar message to you on your Jan. rads board where I have been lurking, but here it is again:

HAPPY BIRTHDAY!!!!!!!!

I hope it was wonderful! Please tell us all about it, ok?

Hugs,

MJ

mariettaj · January 2008

I saw you on the Rads board Mary Jo!! Thanks again for your birthday wishes. I posted on the rads...that rads fatigue hit me in the middle of my shopping spree...I'm going to order a pair of pants online from J.Jill, called studio denim, they look really nice, I think I could dress them up or down..So that will be my birthday gift. Saw a lot of cute shoes last night... and purses (of which my husband had to put his foot down to....no more purses, it's a sickness)

Give that cutie a big squeeze from one of his BC "aunties".... Kiss

Marietta

Starting Chemo in September?? where are you ladies

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