Chemo Starting Sep 09

Dear Barb,

You are welcome!

I meant "post"

You are all such sweeties, I am glad to hear from you.

Amy, I am sorry for the port problem, it is always something,huh?  It is good to hear from you though.  I miss your cute stories.  My hair is all gone, and I can hardly wait to rock the short look when it grows back.  I am sure you will look beautiful with a short do.  The work thing is a challenge.  I have really generous sick time, but I feel guilty being gone a lot, and I have work that just has to get done and I am the only one who can do it.  Alas, this will be in the past soon, and life can return to some semblance of normal.

Pamela, I love all of your posts, you are an amazing source of inspiration.  I love that your DH is willing to shave his head too.  I didn't want to see what my DH would look like bald, so he is keeping his hair.  I am tempted to ask him to shave his mustache though.  I think that might look okay.  One of the teachers at my school did shave her head, she does it every year in March for a fund raiser for kids with cancer, so she has had lots of experience with it.  Still it was very sweet of her to do it with me, and she took it down really short, shorter than usual.  People have amazing ways of showing their support and love.

Barbara, I hope you are feeling well today.   It is a lovely day here, and I feel pretty good, so I am making the most of it.  I got dinner ready and in the crock pot, and am going to bake some cookies for my family.  I even cleaned up the kitchen a little bit.  I guess I need to feel like the mama of the house today!

Okay all of you SOS ladies, I love you all.  Tomorrow is my Race, so please keep a good thought for me that I make it through the whole deal.  My team has raised just over $1800.00, and we may have some more donations still coming in.  I am so proud of all of my friends for working so hard.  I know that the "Cure" is a difficult topic for many, but I just feel that every woman who is helped by the funds raised is a good thing.  I will hold all of you in my heart as I do the Race.  You are so dear to me.

Love,

Susan

Hello SOSisters....sorry I haven't posted sooner but I feel good and was taking advantage to get those fun things done like housecleaning, grocery shopping, etc.  I was too chicken to post a pic of my bald head (it is so ugly), so opted for my hat with the fake halo hair.  Which I might add is pretty convenient on the weekends for running around!

Toni - hope you are having a good weekend!

Pamelajo - hope your chemo brain is clearing up.  How are you feeling?

Puffins, Neece, Karen - hope you are all feeling good.

Vickilynn - I hope you are feeling better.  Worried about you having your treatment and having to deal with hubbys surgery.  How is that sweet puppy doing?

Onty - you are absolutely right about the onc nurses.  Mine also is an angel!

Susan - hope your race is a huge success.  I agree about the decadron - I'm still waiting to get all that energy.  I could also use it.  How did your 2nd treatment go?  Any se's?

Flacracker - what was in the magic mouthwash?  So glad it worked.  It's bad enough that nothing tastes good but to have sores on top is just too much.

China Blue - how are you feeling?  Was 2nd txt better?  What about se's?

Melinda - glad to hear you are feeling well and didn't get chemo brain.  Maybe there is hope for us all.

Ronnie Kay - where are you girl?  Worried since we haven't heard from you!  Hope all is well.

Barbara - I was so happy for you and your tests results!  You will be so glad you got the port.  I also have the numbing cream - have remembered 1 time out of 4 to put it on before treatment.  If you forget the nurse will put something on, it's over before you know it!

Amy - please keep us all posted on your port.  How long have you had yours and how many treatments have you had?  Glad you are okay, we were missing you!

Mari - how did your 2nd txt go?  Side effects?  Is hubby home?  I can't imagine not having my husband around, having a good support group is so important.  I was hoping my bald head would look like yours - NOT!  

Barb0323 & Positive Me - guess it's our week this week.  I am so not looking forward to this, it took me a good 10 days to get over the last one!  What txt are you both on?  Are we all on the same thing?  I'm doing taxotere, carboplatin, herceptin.  I'm going to think major positive thoughts all week!

Delanie, DogSaver, Vicki, Bettye, MaryNY and anyone I may have missed - hope you are all well and having a great weekend.

About the hair - I was ready for it to be off and my head feels so much better and not as sore.  Little red bumps are ugly but nobody will see those but me.

I see my onc or his pa every time I go to chemo - I also have a list of phone numbers I can call for any reason at any time.  I would certainly question when I would see the doctor again, however, my onc nurse is an angel who seems to be able to answer most of my questions.

Vickilynn had posted a website, goodwishes@francelux.com where they would send you a free scarf.  I went on there, requested a scarf and they are sending it to me in the mail.  What a wonderful site and she asked that I tell everyone I know going through chemo so I'm also telling you.  Thanks Vickilynn!

Hope everyone has a good week, no or few side effects.  Think positive thoughts.  My thoughts and prayers are with you!

Jane

HEY BUDDIES...I'M BACK...and, after realizing I last popped in on page 7...and we're on page 12, I promise myself I will never stay away so long!!!  I started at page 8 and read each and every line, laughing, crying, shaking my head up, down, telling hubby how everyone is doing...got through page 9 and realized I'll have to catch up later.  I've missed you All...and am happy for the good & sad for the bad that we're all going through together!  I'm behind on what's happening with everyone..just know each night I say a prayer for EACH OF YOU & think of you even though not posting. 

MELINDA: Happy Anniversary!  We turned the gas log on this a.m. in Seattle. I'm having sinus issues and it's probably weather related. My nose is very dry and sometimes a bit bloody.  I may try Neece's yoga-inspired wash.

NEECE: Yep..we live in Seattle and do love it. Have to admit, we lived in other cities on the west coast with my husband's gov career, and I may have stayed in San Diego, but this is home   Maybe someday you'll come back & we'll visit.

TONI: God Bless You and your family for what you've gone through losing your Grandson. I'm sure he's sending you strength from heaven above!

AMY: OMG..I hate my port...but I'd hate to be without it!!!  I'm so sad that it's become difficult and that now it's another thing to deal with.

JANE: I'm here, dear!  I did read about your awful experience & laughed hysterically (how crazy does that sound!).  When I read about Puff and Blowin' in the Wind & then you typed your age..I think we were in our bell bottoms and long straight hair, singing those songs the first time around!!!  God rest Mary's soul! (For you young ones...that's Peter, Paul and Mary).

VICKILYNN: I had to laugh at your description of non-tasting!  My hubby thinks the more food options he suggests, the better the chance of me eating. Almost nothing tastes good..which is really sad because there's never been a time I would turn down chocolate cake, but right now, I would say, no thank you. 

I had my 2nd tx on Thurs, the 24th, and have to say, it was non-eventful, until Sunday, which was Kick in Neulasta day...I really do hate that stuff.  All of you that have suggested Claritin, I am definitely doing it next time. My nurse said I didn't need it because the decadron would counteract pain (I didn't have Neulasta until 1 week after my first chemo, when decadron had left my system, so the pain was horrid), and so I thought I'd be ok. It wasn't as bad, but still quite painful & I did my best to not complain during Hank's birthday party!  Then, on Monday, I started having diarrhea (love that I don't have to worry about grossing anyone out!). Well, took Immodium, and it worked, felt somewhat better, and then went to dinner with relatives on Wed. night. Bad decision, the diarrhea returned and when I went for weekly herceptin on Friday and told them I'd had the problem not being able to keep food in, so hadn't eaten, they brought in the scale and I'd lost 8 lbs (since chemo the Thurs before).  They were very upset that I hadn't contacted the dr...but I just thought this was one of the "perks" of chemo!  She said that's the type of thing that could mean adjusting my chemo dose & they did give me iv fluid. So, I guess I learned to tell them about everything I'm experiencing. By Fri, even with that going on, I felt great. Jane, I only see my onc on the days I have chemo (every 3rd week), so I thought I needed to rely on my chemo nurses. But they said to relay everything to onc office, via phone or email. By the time I got home from herceptin, there was an email from my onc nurse saying to keep in touch with any changes I'm experiencing. I felt like emailing back that it's not a problem, I have my SOS Medical Team to consult!!!  Does that mean I should be paying all of you

Dearest SOS: I have to tell you something very special. The first thread I joined was with a small group of gals who had just ended, or were about to end treatment. They said to stay, and I did, but I found Vickilynn and joined her immediately   Anyway, these gals have been like big sisters to me. They don't post often (so I don't get behind!) but when they do, I'm like a little puppy dog, waiting to hear what our lives will be like a year from now. Here's the most exciting news: they had a reunion! They met in a central location, so they all traveled about the same distance (I don't think they had our international sisters), and spent a week together. These people who had spent their lives together through this thread,  people who knew their thoughts, worries, concerns, joys, pains, triumphs...even now, there are times I wish I lived next door to you all. Just reading of the experience made me hope and wish that some day, we will all...maybe we meet in South America, who knows...meet & celebrate & hug the ones who have been there for us, through all of our ups and downs. Something to think of...start saving our $...if there's any left after bills :)  Maybe it's a new fundraiser for our dear SUSAN!!!  Love to all & strength for this week's treatments! 

Hi gals, been under the weather a little since tx no 2 last Thursday, though SE's not as bad as first time round. Nausea much more controlled this time - it was definitely worth making a fuss about the anti nausea meds that night! Also I had lost a little weight since my first tx so the onc lowered the taxane dose a bit which I guess probably helped reduce SE's too. Oh dear - does that mean if I put the weight back on she wlill up the dose again next time? If so that's a big incentive to watch what i eat!!

We are in a long weekend in Australia and the warm dry spring weather turned cool and showery (which did great things for my hayfever and sore sinuses) so have spent two days indoors with a fire burning and a rug over me. Feel very weak and tired - how come with chemo fatigue you can sleep for hours yet wake up feeling tired? Weird. Anyway this is the first time I have had the energy to turn on computer and I have enjoyed catching up with  all your news.

Barb I was so happy to read your scans are clear. What a relief for you.

Amy glad you are OK but sorry to hear of your port problem. Fingers crossed it gets fixed quickly for you. Mari my last tx will be just before Xmas too! Not sure what that will mean for Xmas celebration this year.Susan yes my DH gives me the Neulasta short the day after tx - he didn't cry this time - but comes out in sympathy pains right after!

love to you all, have a good week everyone.

Neece

Dear DenverDiva Susan,

Thank you. Thank you. Thank you.

Love

Susan- what  a super job and way to go girl. What  a sweet shirt for your hubby to wear it makes me want to say awwwww.

Ronnie Kay- I am so glad to hear from you. I was wondering in my head where you were.  But sometimes the things that roll around in my head don't always make it to my posts. But you were in my thoughts! One of my closest friends grew up in southern California but married and moved to Seattle and that is where her heart remains. Of course she lives in Michigan now and has for years, but her heart is in Seattle. It must be lovely.

Jane- that is a really cute shot-love it.  I could be way off base but is that a  cute little puppy dog in your lap? Thanks for the info on the cream,I was glad Barb mentioned it was for chemo because I really would have slathered it on before my port placement.

I just heard it is snowing in Montana, hope Toni is OK and staying warm.

For all you ladies with TX this week good luck and much positive vibes. And for all of you in between TX may you mav a perfect SE-free week. I will keep you posted on my magical port placement.

Barbara

Hi SOS....been a long 2nd A/C here for me...Got it on Monday and have been down and out Thurs-Sunday....I really didn't expect this to hit me so hard on the 2nd round...Constipation, then diarrhea, the sizzling stomach effect, gas,  ....hots then colds, zero energy, felt like an drug addict...couldn't sleep and racing mind....took my restoril  at nite but only could sleep for 3 hours...then awake feeling awful for the next 21 hours burning in my chest and every inch of my digestive tract oh and just for good measure brain pressure on & off!  This has lasted for 4 days...is everyone else dealing with all this and for so long? Today is day 7 and I go for bloodwork...Gonna have a long talk with My onc..who I hope is back from his BC Seminar...Need to get some help here....At least if I could sleep some through the bad days I could get a little peace and rest.  Anyone taking the companzine? Have you noticed it causing diarrhea? Just wondering if anyone has any thoughts on the results of taking it.  Also, anyone have a recommended sleep aid...something that actually makes you sleep for 8 full hours? What are you all using?

Beautiful day here in sunny PA...glad I am starting to feel a little better...Amazing Susan on your walk....keep it up! We're so proud of you! Neece..glad the nausea meds are working...when are you using them? After the normal round of chemo meds....what are you taking?   Pamela..I just laugh after you're posts...sometimes I don't even understand them and have to read them over and over (chemo brain dead cells) but eventually I get my brain around it and have a good laugh! Ronnie..a Carribbean vacation would be lovely....not making $ right now...so maybe I'll win the lottery (if I can remember to play) and take you all! We'll all feel great and have great tans, European haircuts and be all be totally vogue... oh and don't forget, we'll be 10 pounds lighter and look great in a bikini   Flac...and everyone else...thanks for keeping me in your thoughts...everyone is in mine as well.  BTW...hubby shaved my head Sat Morn...& I look just like my dad....(god rest his soul) ...haven't gotten around to the wig yet...as my head is weird feeling and has some pain where the hair is coming out...but it's feeling better today and I may just try it out....

Ok...question of the day...When you're in the worst of your chemo days....do tv shows and movies just seem so ridiculous? It's so weird....I just look and think...I actually like this stuff on good days....what's up with that...Books too, I just read a David Baldacci "Divine Justice" and I love the "Camel Club" but it was just so so stupid in my mind....Just wondering if you guys are having that same feeling...

No helpful tips today....just wishing you all a very sunny high energy day with out SE's!

Melinda

Hello SOS

I hope everyone had a peaceful and relaxing weekend. Well Sat. was the day for me. My friend shave my head totally bald. The little hairs were hurting and so was my scalp. There were a few tears which shocked my because I am not a weepy person. I am over it now and wearing scarfs and hats. Not really crazy about them so as soon as I walk in the house off they come. Tx #2 is Thrus. and my Mom wants to come with me so we will spend some time chatting.

Susan-Way to Go!! What a positive expierence. The LGFB better class is awesome. Look forward to more freebies.

Mari- Glad to hear your company was a help. I am sure things are much better now that your hubby is home.

Pamelajo- Your hubby is fantastic. Mine offered to shave but I said no way.

Vickilynn- Sorry to hear about the taste buds. How many days has it been like that?

jadams- Glad your having some good days. Thrus. will be here befor we know it. My tx is cytoxan and taxotere X 4. Thrus. is #2 for me.

flacracker- You will joining jadams, myself and barb on our wild ride on Thrus. We have to think positive and all will go well.

RonnieKay- Happy to hear from you. I would think losing weight would be a good thing for most of us but I guess that was too much too fast. It seems like you are in good hands with your dr. and nurses.

Neece- Sorry to hear you are not feeling well. Just rest and take it one day at a time.

I have to say it again- All of you are so important to me and I look forward to checking in and seeing how everyone is doing. Sharing this journey with you has made all of this much easier and less frightening. Thank you, Thank you, Thank you

THINK POSITIVE

chat with you soon

VickiLynn,,,,what a beautiful song....thanks for sharing it....would love to have been a mouse in the room and heard it in person.... the words are so reassuring...

I have 2 more A/C's.. Last weeks kicked me to the ground for 4 days...I was so sad and sick...talked to my Onc...most of the  side affects were from the Decadron...It and I are like water an electricity.  Goes in nice and then just zaps me...terrible gastric pain from my throat to the other end...hyersensitivity...sleeping only 2-3 hrs per night which puts me in a worse hyperstate from the steroids and lack of sleep....head and feet pain...I can go on...but you guys know the drill! I shaved my hair off in the middlle of it all and was in terrilble scalp pain for 24hrs afterwards.  I'm laughing now but....I was really on the edge by Sunday...good thing I had my ONC on Monday.

I explained every little thing that was ans issue for me...I knew I would be tired for lentghs of time /no energy possible sick....but my S/E were those plus everything above...After the review he offered a few suggestions....

For the burning gastric issues in chest/throat/stomach -sizzling he recommended PEPSID AC -specifically- Withing 15 minutes I was a new person...I had decaf Icetea (for the 1st time in three weeks(I was able to drink ginger tea sometime in the morn) Only thing I have been able to drink was water (it is getting boring) So I want to kiss him for that! It was a real problem for me.

The decadron(steroids) causes the gastric burning and the hyperstate non sleep issues...I get what I call head spins where I get a subject in my head and I just overthink it for hours....it's part of my normal stress issue.  It used to be how I fixed my problems when I had my business, now it actually creates them.  So anyways, ONC said "let's look at adjusting your Decadron (hooray). There's nothing written in stone the amts, we have recommendation/guidelines where we start and they can be adjusted or removed at anytime.   So let's stay with the infusion and then on day 2,3,4 try taking just 1 pill instead of two.  See how that adjustment works...if you start to get nauseas, then we may add an extra pill again on day 2or 3... in the meantime he's added Ativan for 3 times a day(as needed)  to calm me down and help me get regular rest and it also has a anti-nausea effect as well. 

I had a great nights sleep last nite...and am feeling way more like myself today...however I should be it's day nine and should have been better a few days ago.  Anyways..just thought I'd share that incase any of you are having Steroid Hell days...Maybe it will help someone. 

Vicki...when you have all the time in the world...you should give Kemo a few tidbits let him chew and video tape him singing your husbands song....I have a picture in my mind of myself with  happy tears watching it....ok I always have some creative thinking going on...

I did mention I shaved my head...I hate every head covering I have! I'm heading out to my studio to design something new...I have a vision....I promise to post a pic of it as soon as complete!

I must be feeling better...I haven't been in the studio in over a week! I'm baaaack! 

Austin wants to make a snowman pumpkin for Halloween...hmmm guess it's time to go to the pumpkin patch.... Enjoy each day...even if it's just a little bit! .....We're getting closer to our clear future!

Melinda 

still feeling ill, icky, run down, tired, cranky, and believe it or not like a nympho, but alas and alack, hubby is on night shift, so I must take frustration out on something else till i get him home!  He's in trouble when I really feel well and he's there.  Ok, too much information, but I'm on a big old dose of CRS and massive derailed train thinking.  I want fried chicken.

Yay, I love my life right now.  Not!  yes I do, no I don't! 

Alas, I get that whole love my life, hate my life thing you got going on Pamela.  I came home feeling crappy today, and ate (too much) macaroni and cheese.  Which did make my tummy a little happier than it has been, but not so great for my girlish figure.  I am sorry your hubby is on the night shift.  He is a lucky man and doesn't even know it yet.  Grrrrrrrrrr, I am having all kinds of "ovarian" (I think it is anyway) pain.  I thought that these babies were supposed to shut down from the chemo.  It feels like I have a cyst, or at least like I am ovulating big time.  What gives?

I took yesterday off of work, and went to the LG/FB class.  I met some really nice ladies, and got all of the freebies, including a cool red felt hat.  I then had to take my daughter to the dr, and that involved driving about 150 miles round trip, which left me feeling horrible.  I should have never tried to drive that much.  I went to bed early, got up early, went to work early, and came home early.  I'd rather be having a party with all of you!!!!

Speaking of party.  I like the idea of finding a benefactor who would like to bring us all together for a vacation.  I'd even be willing to sell my soul to reality TV to get some swanky vacation venue for all of us to get together and have SOS spa girl time.  Maybe someplace tropical, and just in time for bc awareness mo. next year.  We could do our part in raising awareness, and get to have a fabulous reunion to boot.

Okay, enough for fantasy.  I need a nap NOW!

Love you all,

Susan

Today my hair roots are hurting. Is this a pre-symptom of impending hair loss or in the mind?