Jan 2008--Ain't it Great?

LJ13

We most have been posting at the same time.

WOW what you said made alot of sense. I never thougt of it that way. Thank You

I hope your feeling a better

Happy Saturday fellow Sisters in Survival, I like the thought of being in survivor mode now.  As my onc said, "we removed the cancer" now we are going to keep it from coming back.

Jenn, as large node donater (34) of the little buggers I have chosen to see a pt for some input.  My two cents ... basically I just do stretches.  The dh installed a pulley in the bedroom door way and I sit in a chair and pull up to each side almost directly under the pulley (just so my arms don't hit the door jam).  I also have one of those stretchy pieces of tubing that is tied to the door handle.  I stand in front of the closed door and pull to each side towards my waist.  As I get better I should be able to raise my arms and pull towards myself.  (Kinda hard to explain).  There are an array of others, laying down with arm stretching over your head as far as possible.  My pt always tells me to not push it to the point of a hurt, just a slow stretch.  I am fortunate as well that my job is very physical and I think that has helped in some ways as well.

She also took measurements of both my arms to get a baseline.  Maybe at some point you will feel like meeting with a pt to get some basics of your own.  I know what you mean about not wanting to put more on your plate right now.  I need to make an appt with my dermatologist (time to do the yearly skin cancer check, mom died of melanoma), and right now I just don't really feel like another doc appt. 

wvgirl, so glad that your dh is coming around.  Like you said your not asking for a transformation, just a "little" emotional/physical support can goes miles, and it sounds as if he is making baby steps!  Glad you have some additional support from the group you saw, sounds like a nice group.

Julie, gotta like the help from your sister, kudos to her!

PALady, Yep I've been faithfully using my Nioxin shampoo and conditioner.  I am so far very lucky that my hair just continues to thin, the onc said he would be very surprised if I lost it all.  I actually have it cut super short so atleast those hair that wind up in my mouth from my pillow are short!  I'm starting to think that only the gray ones are staying put!!!  I also use the conditioner on my arm and incision sites, my gal friend (estetician/beauticain) whatever the heck she is said that its great for the skin as well.

What's up with this chemopause thing?  Has anyone had that kick in yet?  I think I'd prefer the se's from that vs. the dreaded Aunt Flo from hell.  I had been on birth control pills forever (until diagnosis), just for the ease of an almost non-existent period.  Now I have had hellacious periods the last 3 mo.  Bring on those night sweats, it will go great with my sahara desert mouth in the middle of the night!

Vettegal, bummer once again on the diarrea situation.  One of those drugs certainly isn't agreeing with you.  That had to be kinda a scary situation having a reaction as you did.  Hope your feeling slightly human as the day goes on.

Kris, how cool of your co-workers to join you with the new "do's".  So are the dh and ds going for the total shave? 

I have found on another thread (Washington Ladies) a lady  (Kalen)who lives about 15 min away from my home.  I have told her about our great group of gals and I'm hoping she'll pop in.  She has many questions about AC x 4 and then Taxol x 4  (I think) and will be starting her txt in about two weeks.  I noticed that she had only been online a couple of times and so wish she would check out what you all have to share, as my regimen of CMF seems so much more tolerable than what you all have been going through and I can't share personally like you all would be able to.  Hoping to get together in person with her real soon.

Well its a big day, planning on swinging a golf club at the driving range today.  Havn't done that since last September as life has had a few detours since then. 

Enjoy your Saturday as best you can,

Carol

Thanks for the shot out wv girl yesterday and today have'nt been to bad yet just that the taste buds already are acting up tho, and then what really will get me down will be the nuelasta shot i have to go get on Monday not looking forward to all that again.  Hope you are doing good as well Thanks

Howdy Jewels,

Well the score so far for sleeping thru the night is CF (chemo fatique) 0 and FC (f%&^ing cough) 1. I just got in from my having my Neulasta inj. Did some shopping afterward and picked up a couple of cute hats. Also picked out some yarn to make some caps. I can knit and crochet, so thought I'd give it a try.

Carol- I just loved the story of your step-daughter's engagement. How romantic to be given such a special ring! Have fun on the greens this weekend!

Jenn- so good to see your posts. I'm sorry you missed out on Celine last night. I, too, am experiencing limited range in my arm (I had a lot less nodes taken than you, tho...) I do my exercises and I can use my arm without difficulty, just have some tightness and pain when reaching at some angles. Didn't expect to still have this almost 2 months after surgery. My surgeon was pleased with where I was when I saw him a couple of weeks ago. So, I'm trying to not be too discouraged about my limitations.

WVGirl- sounds like hubby is coming around. Glad you're getting the support you need. Hope you have a good weekend with few se!

Julie- You're probably in sleep mode today and I hope the rest revives you! Gotta love those sisters--how nice of yours to come clean for you!

Deb1023- wishing you and your partner a bug-free, se-free weekend. I love the scrapbook idea. 

Dana- I am so sorry for the loss of your police officer. I am always touched and amazed by what heros they are and how much they inspire us to be better human beings! 

PALady- so not fair getting the Flo again! I hope it isn't too traumatic for you this time. My last period was the day my dh had brain surgery. I was 44 at time, so at first I thought I had quit bc of all the stress of dealing with his brain cancer tx, but they never returned (I had already been skipping for a couple of years prior). So I have been menopausal for 2 years. I would be HIGHLY PO'd to have chemo knock me out of the 'pause!

Vettegal- glad your chemo team was on top of your reaction. You gals are def. NOT making me look forward to my 4 rounds of Taxol! Rest well this weekend. BTW, your firefighter story was a tear-jerker!

Kris- what a great bunch of men you have around you to buzz in your honor!

Kimberly- I like the idea of keeping the head shaved. I thinking I'll take your advice on that one--hate the stubble!

LJ- so sorry that you're developing congestion. Hope it doesn't linger and make you more miserable next week.

Therese- glad to see you posting again. I have several treatments to go, but the same diagnosis. Triple negative came up last week, I believe. I think there are 8 of us here. At first, I had trouble dealing with the higher risk of recurrence assoc. with triple neg. Mine was calculated at 20% with the dose dense, 3 drug regimen + rads.  Every women has a 1 in 8 chance of getting bc anyway, and as we age that risk goes up to 1 in 6. So, statistically 1 in 5 isn't that bad. Anyway, that's my way of rationalizing it... I am determined to look at the positive side. Mine (like yours) was discovered early and treated aggressively. We are survivors!

Joan- been thinking of you and your mother. Hope things come through to get her settled near you very soon! Sending you good vibes as you get ready to join the Bald Babes Club. You're in great company!

Well, well, I outdid myself... time for another nap. If round 3 works the same as the previous 2, I probably won't do much more than lurk for the next couple of days.

Have a great weekend, Gems

Paula

just a real quick.  I got the neulasta shot Wed afternoon and really starting to double over today with a killer backache, hurts to sit if that makes sense. So it seems to hit me 3 days later.  Still have the fuzzy tongue/mouth and it's driving me insane.  Starting to feel a bit a raw in the nose also....  ok, enough whining....time to go create supper.

tootles

Kris 

Good Evening Jewels,  Just got home from my first night at work wearing my wig.  Its so funny watching co workers try not to look at you the harder they try the more they look.  I figure soon enough they won't remember what I looked like before.  I am a TSA airport screener in Manchester NH and wear a uniform so anything out of the ordinary is noticed right away.  A couple of the old ladies said I look better now than I did before. (bitches!)

Hope everyone's se aren't to bad today.

Carol, thanks for sending out the shirt let me know when you get the check. 

Vettegal, That sounds so scary I would of be freakin out and probably would have lost the dh to the floor!

About the sore back I also took some of my leftover painkillers from surgery and that helped me to sleep better might help some of you sleep better too.

Dana, Sorry to hear about the police officer your community lost they are out there putting it all on the line for our safety.

Therese, I am doing the clinical on Avastin for triple negative there is some info on BC.org press release you can read about it there.

Have a nice rest of the weekend everyone and get some rest!

Had a rough few days. reallyscared the sh*t out of me. Had stomache cramps and waves all night long. This round scared me to thr point if he said i wouldn't do anymore i wouldn't...my rib muscles ar actualy still sore. like a 400lb man was sitting on my chest. Stayed in bed most of yesterday..total exhaustian. Had some eggs this morning, can't wait to take a shower to get fresh if you know what i mean. I don't wish what i went thru on any human being..It reallyscared me. and it takes alot to scare me....

take care jewels, i am going to be resting again today. i really can't do much of anything...

OK, had to take a break to change a diaper.  I don't think ds will ever get the hang of the potty...

Julie: I am so hoping your weekend went better this time.  Please let us know when you can if your new regimen working better.  Sending good vibes your way.

Deb:  Egad!  Your docs shouldn't use scare tactics like that! Having been through neutropenic fever myself already, I can tell you it's no picnic though.  Your Neupogen and Procrit should help ward off the evil spirits for you.  I had no trouble with it this round after I got Neulasta.  Glad to hear your partner is better and you did not catch it.  So, should partners be "dp"s on here?

 All of you creative people... I am so jealous.  The scrapbooks and poems, etc are so cool to read and hear about.  Somebody should write a book about the Jewels...

SIS KImberly:  Glad your eyes are better with the drops.  I have some too here in my "home pharmacy" that I use time to time. 

I agree with others about the timing (being a herceptin gal myself).  I considered myself a survivor after my cancer was removed with surgery (August).  But I count my anniversary as when I found my lump and the whole journey started (which was the beginning of August).  I think in some ways, I'll count each part as a yearly milestone at the beginning (finding lump and getting dx, surgeries, chemo start and finish, finishing herceptin).

WVgirl:  Good ot hear your dh is coming around.  I totally agree with LJ's great analysis.  Nice that you have a support group, too.  Yay!

Dana: Chase those dreams girl... you'll catch them someday!  What a nice plan for your future.  I believe that people can acheive anything they set their minds to if they want it bad enough.  And good luck Tuesday-- I'll be thinking about you as you get your liver results... we want all NEGATIVE (meaning no cancer, not bad news ).

Vettegal:  Welcome to our mini-club of Taxotere reactors:  you, me and D1!  Sucks, huh?  I laugh about it now, but it was very scary at the time and I hope it doesn't hapen again when I do #3 next week.  And about the rib pain... I had it to.  The back of my head, neck, shoulders, and ribs all felt like I'd been beat up and was bruised for about 2 days each round.  I hope that pain isn't cumulative.

PALady: I think my body is gearing up for TOM again, too!  I have all my usual s/s for the week before.  I will be so pissed if I get it again next week.  So not fair!  I have heard about nioxin shampoo also.  My mom's hairdresser had ordered me a bottle from PA and it's on its way.  I can't wait to try it on my fuzz.

Carol:  Hope you had a nice round of golf.  My dh lives for it. 

TexRN:  good to hear from you again.  I can sympathize with you about the colds.  I've had two also (and am currently still "enjoying" the second for over a week now).  I've tried avoiding people too, but it must be my lovely kids sharing with me.  I've gone through so many tissue boxes already it's insane.

D1:  Good luck Tues. with your specialist.  I hope they can bring you some relief and good info.  And what's up with your nails?? I hope you don't lose them either... (it's one of my biggest fears, too). What kind of nail care regimen have you been doing so far?

Wing: LOL about your reaction to the old bats' comments!  You probably look better bald than any of them do with hair .

Gotta go feed everyone.  I'll try to keep up better today and tomorrow!

Hello Jewels,   From a soggy, rainy, dreary Indiana.  I could really use some sunshine.

D1, So you are out of contacts for a while too.  I only wear 1 for close up, reading , etc.  So when it isn't in I only need glasses for reading.  I have always put my glasses on my head when I didn't need them.  Guess what, without hair they don't stay there very well.  And I'm afraid if I put them in my wig I'll pull it off when I tried to get them off my head.  Wouldn't that be a sight, hair dangling from the earpiece of my glasses & me trying to put them on my face.  I broke down & bought a chain yesterday.  I really feel old with my granny chain around my neck.  But it serves it's purpose & I haven't lost them so far today.  I guess I'm going to call my surgeon tomorrow.  After looking for exercises on line I don't think I should still have this much swelling & discomfort under my arm as I do.

%#^*&#, the last thing I wanted was another Dr. appt.  I'm with you on losing our nails.  The hair I can handle, but my nails NO WAY!

SisKimberly,  thanks for the idea to look for Celine on line.  I still have no idea why it didn't record.  I had a couple of other shows scheduled that night & they recorded OK.

Vettegal, I am so sorry you are having such a rough time.  The body aches & fatigue hit me so hard for a couple of days I can't even think about going for another tx.  But we all have to.  The other choice is unacceptable.

LJ13, That fever was scary.  I'm glad things are looking better.  Get lots of rest & take your meds.  I think you did the right thing calling the Dr. in the middle of the night.  They don't give us guidelines like a fever limit for entertainment.

Best go get something constructive done.  Even though I'm so much better than last weekend I can still only do 1 or 2 small chores before I have to rest again. Love & hugs to all of you.

Hi,

It's day 10 since tx#3 & I'm feeling (dare I say it )pretty darn good!

2 out of 3 kids are sick & so is my dh - I have no problem avoiding my dh if I have to, but how does one avoid their own young children? Everyone has their own dedicated box of kleenex & bottle of hand sanitizer, but that's about it - as it is, I feel isolated sometimes, not working, avoiding crowds during this bad flu season, etc... Anyway, I shouldn't complain - I work primarily weekends ( by choice ), so it's been nice to be home with the family every weekend. My doctor said he will release me to return to work on 4/1/08, so on my good days I've been cherishing the time with my family - even when I'm down for the count, I enjoy listening to the

noises of the house; the pitter-patter of running up & down the stairs, the bickering, etc... The noise is strangely comforting to me.

If anyone is interested in reading or hearing stories from bc survivors who are on the other side of their bc, I found a very uplifting website, called: livingconversations.com. It made the light at the end of tunnel shine a little brighter for me.

Hope everyone is having a restful weekend.

Therese

Afternoon Jewels-



Wendy- Sometimes people don’t think before they open their mouths, but in their defense, I wonder if they really were just trying to make you feel good about the wig, but totally screwed up the compliment with the way they worded it. Either way, I know it didn’t feel good to hear that…it was probably hard not to think,”So, I looked like c#*p before? Thanks!” Personally, I like the way I look in my wig better than my ‘normal’ hair. Baby fine hair didn’t style well, and my wig looks stylin’ all the time. So, when I’m not sportin’ the balditude, the wig is a great alternative…something I might even wear after my hair comes back.



I knew I had to talked to someone last week about a trial and triple neg. Whew, the brain worked!



Carol- Sorry for the scare, but glad your DVR worked. I wasn’t trying to record the concert, I’ve seen Celine in concert, and she’s great. I was trying to record Lost and Eli Stone, which is why we had to watch it using our media computer with the TV as the monitor.



Vettegal- I am so sorry that you seem to be having such a bad time with chemo. Good thing you’ve got such a great dh to help you out. Take care and get lots of rest sweetie. ((((HUGS))))



Kathy-WHooHoo to feeling really good!!!! You don’t have that issue of having to wait in line to enroll your child in kindergarten do you? Man, in our area it’s crazy…people stand in line for hours before the school even opens. It’s all about attendance areas and not wanting your child to be bussed due to overcrowding.



I like the idea of writing a book about the experience of the Jewels. My sister gave me a book about four gals who were doing treatment together and met an Nordstroms at Noon, thus the book’s title, to share their experiences and to support eachother. Haven’t read it yet.



LJ13- Man, you gals and your respiratory infections…knock on wood, I haven’t so much as caught a cold. My stuffy head last week was probably an se…it was gone in a few days. I’m hoping that you’re done with this viral infection sooner rather than later…it so sucks to be sick when you already don’t feel 100%. Take care of yourself again today…I think with the fever’s retreat, you’ll be doing much better by Tuesday.



Jenn- I wish I could send you some sunshine… spring is on the way…hang on. Love the glasses lament…I forget I have no hair to hold up my sunglasses, too. I wear readers for reading…haven’t gone in for my eye exam as I was told…as D1 is discovering…chemo could effect my eyesight as far as my prescription…not sure why, but I’ll go this summer once chemo and rads are done.



CHJ- Ditto what I said to LJ13…I can totally understand breaking down and just wanting a few days of feeling decent before having another infusion. ((((HUGS))))



Terese- I’m so glad you are feeling good…and bummed you have to be around all the sickies in your house…lots of hand washing. Good deal that you can go back to work in April. That’s my last month of chemo. So, no radiation for you, then. That’s good…you’ll be back to a more ‘normal’ routine pretty soon.



Well…I’m all caught up for now. Have a great rest of your Sunday…and for those of you who work and have tomorrow off…yippee!!!!



SIS Kimberly

Hi Jewels

Have been checking in but haven't had a chance to post this week. I am due to step up to the bar for Chemotini #2 this Thursday and other than complete exhaustion at the end of the day, had been having a pretty good week until Thursday.  Went for labs amd wasn't feeling so hot, the nurse called later and sure enough my wbc were pretty low. Started antibiotics and hope they work as I don't won't to get off schedule. Will have more bw before tx Thursday. Had a little get together for the hubbys 50th last night and it was a blast. We are big NASCAR racing fans and this weekend is the 50th anniv of the Daytona 500 so the party had a racing theme which he loved. He deserves so much more, but with the low counts, wanted to stear clear of big crowds.  I agree treatments in the winter are harder with so much going around and we seem to catch everything now. Before tx I never caught anything, now I think I have a welcome sign out. The hair is really thinning now.  I have shaved twice and leaving behind the short stubble everywhere instead of my normal legnth & style has really helped me deal with it.

CHJ hang in there.  The first week and a half after treatment, were rough. But this past week I actually felt normal and accomplished quite a bit.  And yes, I am right there with you on the taste buds & appetite.  Never in my life have I had to force myself to eat. Normally I love just about anything and am addicted to coffee, & chocolate.  Right now, I can't handle either one. Salt is my thing right now, I think because I can actually taste it. Lost about 5 pounds so YEAH!!

One of the many things I have learned from you lovely ladies is that I will listen to my body a little closer this go around and not challenge it all the time.  I don't have to try to be superwoman.

Well, better go accomplish something while I can and get ready for work tomorrow.  Praying everyone has good days ahead with minimal SEs.

Take care Jewels.

Jackie

I want to be human again!  I feel exactly like you do Chj my chest is so tight today, burning cough,hurts to take a deep breath. I keep telling myself no getting sick Kris, the se's are bad enough, but no chest/head crap!.. sorry..didn't sleep well at all,

I'm not sure if it's the neulasta, getting sick, whatever.. just the slightest pressure on my body hurts...  not sure why, but I'm a wreck today.   I'm trying to compare myself to the first tx at this time, and I was feeling pretty good, but this 2nd tx seems to be hanging on longer and harder....

sorry... 

Hello Jewels,

Yep, the site is running a little slow today ...

We've actually enjoyed a bit of warmer weather here in the Pacific Northwest, hit a whopping 54 today.  If you stay out of the breeze its pretty nice with clear blue skies.  Hit the driving range yesterday to see if I could swing a golf club ... happy to report that all went well and we hit 9 holes today (even walked the course).  I'm now sitting here in my recliner with the sun shining through the windows and feel like one of my dogs stretched out and having a hard time keeping my eyes open.

Jenn, my dh had success recording Celine, I'll mail you copy on Tuesday.   He said he couldn't get it to record in HD, but its still good.   I did have to chuckly on your granny chain, just remember you'll be able to toss that away in the near future.

Joan, your mom is very lucky to have you to help her with her needs.  The nursing home situation is never a whole lot of fun.  I was visiting my 97 yr old grandma today, she just got moved from the common area, to the dementia unit.  Its actually nicer than where her room was before. 

Therese, thanks for sharing the website of survivors, I'll be sure to check it out.  I'll keep my fingers and toes crossed that you escape the wrath of the dreaded cold in your house.

Speaking of colds/flu, sorry for those of you who down and out with the crud.  Hopefully some warmer weather will be in sight in the midwest/east soon and dry up some of those nasty bugs.

Paula, time to one up the "FC", I think you have had it just about long enough.

D1, so you just had cravings for chips and dip, I have one sore hoot!  Its not looking good for this month as well!  I recall a cancer survivor friend at work saying she had to put her fingers in ice at her infusions.  Have you heard of that one, I know I chomp the ice chips during my pushes for mouth sores, this might be the same sort of preventative med.

Kimberly, cleaning huh?  Okay I don't feel so bad blabbing on about being out golfing knowing atleast one other sister is getting out and about.  Hope you didn't overdo, I know you seem to go like a bat out of hell when your feeling pretty good.  You've got a couple more days it looks like before your next txt, enjoy.  I look at the weather in Redding quite often, looks like you all are having some great sunshine.  I've been "lurking" on the ooph site as well, I'll probably want to pick your brain as time goes on.

Vettegal, so bummed that your having such a tough time recovering from txt #2.  Boy I sure hope you can laugh about this as KathyL said, in the very near future.  You hang in there gal, there is light at the end of the tunnel.

Kathy, I am in awe of you and others that have small children to be mom too, as well as try to take care of yourself.  True SHERO's!

And on the Miralax front, still trying to get that perfect dosage, but happy to report I could concentrate on my golf swing and not my butt cheeks!

Carol

Good morning Jewels!  The site still seems slow this AM, I'm hoping I can post without problems.  dh has off of work today-- he's finishing work on our shower (regrouting-- a "man thing").  We sent the kids off to preschool.  It's nice and quiet here right now.  I would kill for some sun and warmth though.  DE is wet and gray today.  Yuk!

SIS Kimberly:  Our school district assigns a school based on neighborhood location.  If you don't want to go there, you have to "choice" somewhere else and that's a hassle, and you might not get in.  Luckily, the preschool the kids go to, which will also be dd's before/after school location for kindergarten, is in the same area... so we don't have to "choice" her. 

Too bad you live on the opposite coast, I'd love to write with you!  I still think a book about us Jewels would sell for sure.

I'm also waiting for my annual eye exam.  I'm hoping my supply of contacts will make it.  Anyone know how long we should wait after chemo to get our eyes checked again? 

I usually post the week's "events" all at once on Sunday.  Does this work OK for everyone.  Just making sure...

JackieB:  Good luck Thrusday.  Do you have your other dates?  That way I can include you on the weekly lists.  I did not have Thurs. for you.. sorry I didn't post it with the others.  I'll add it now to that post.

D1:  "hair whores"???!!  LOL!  I was almost crying I was laughing so hard over that one!  My onc recommended nail care for the taxotere (or any taxane) as follows:  tea tree oil twice a day to all nails and cuticles, and apply a nail strengthener 1-2 times a week.  The TTO smells, but I do it just in case it saves my nails... I figure it can't hurt.  I got it at GNC.  And I use OPI's Nail Envy twice a week to my finger nails.  I don't polish my toes regularly, but they have a nail strenghtening base and top coat on already.

Kris60:  ditto what D1 said to you.  Drink, rest, check temp!  #2 seems to kick a** for most of us.  Hang in there.. another (big) bump in the road, but you'll do OK.

Carol:  I've heard about the ice theory too.  Someone on another thread posted about it.  I guess the theory goes that if the area is cold (head, nails, hands/feet, mouth) with ice during the infusion of a chemo drugs (like the taxanes-- I mostly hear it in reference to them), then the drug will not "go there" as quickly, and thus will have less or no SE there (like tingling, nail or hair loss, etc.).  I think the same is true of sucking on ice with cytoxan infusion-- less mouth sores and metallic taste.  I DO drink ice water and suck on ice all through my chemo, and especially the 1/2 hr of cytoxan (just ice then)... and so far I've not had a single mouth sore.  But I also do a lot of mouthcare.  So, who knows what's doing it.. and maybe I'm just lucky.  I personally don't want to put ice on my head.. and my hands and feet are already cold, so I don't really want to ice them either.  I think the Europeans do a lot of research in this area.

Glad you had a good golf outing.  Some exercise and fresh air are the greatest medicine!

Have a good day Jewels!