Jan 2008--Ain't it Great?

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  • JulieK_11_30_07
    JulieK_11_30_07 Member Posts: 260
    edited March 2008

    Hello Jewels - well, so much for the nice weather!! We hit over 70 on Sunday and are facing an ice storm and 4-6" of snow today! The dh and ds are both home on a "snow" day, although all we have so far is ice. They just left for some grocery shopping to stock up on stuff - it's supposed to be a doozie (is that a word??) of a storm! I'm just hoping our satellite Internet continues to work or I'll go crazy!!

    Spent from 2 p.m. till 11:30 p.m. on Sunday working on ds's history project!! After the long day on Saturday, I was a tad "short-tempered" on Sunday. He did well, though, and didn't complain the entire time and it turned out great!

    Dana - thinking of you today as you experience tx #1!!! Yahoooo - you're finally started! I just LOVE your positive attitude. Awesome about the reimbursement you're getting - what a great program!

    Kathy - what beautiful pictures!! Your little ones are absolutely adorable! Glad you're feeling better and able to get some things done. I have to do my "to do" list in spurts - I poop out so fast! BTW - b-day for me is 2/22/69 - just turned 39!

    D1 - Glad your fog is slowly lifting! And that your onc actually acknowledged your spasms! There's definitely something to that with so many of the Jewels having them.

    CathyCA - hope your tx goes well today! Go beat some BC butt!!

    Kimberly - glad you got to get over to ds's and just sit and enjoy while the boys worked.  Is there any other way it should be done? Not that I'm aware of! I have a feeling I'm going to have some "adjusting" to do this summer with the sun thing. I'm a HUGE summer/sun nut! We have a pool and a boat and live in the sun during the summer! I have the type of skin that doesn't burn easily so I rarely have to use sunscreen unless we're going to be out for a really long time. I'll have to force myself to get used to that.

    Vettegal - loved the pic - what a cute hat!!! That's something I haven't really invested in - mainly scarves for me. Maybe I'll look for some cute spring hats, though. Glad you had a nice day in Pittsburgh. I agree, the kindness of others as we go through this continues to amaze me. My co-workers have been amazing - bringing meals (and I live an hour away!), sending cards and emails. I get so touched by everyone's kind words and encouragement. BTW - so glad the chemopause has hit for you! You won't miss Aunt Flo at all!!

    WVGirl - glad you found the book! Hope it does wonders for the DH/dh.

    Carol - sure hope they reconsider and end up paying for your sleeve. I think it's a good idea to go ahead and move forward with it, then get reimbursed. That way you know you'll have it when you need it.

    Sftfemme - Biotene toothpaste and mouthwash for me too. Haven't had one mouth sore yet! I go back to my regular toothpaste after about 2 wks also.

    Thinking of all of our Jewels - hope everyone has a great day, se-free!! FUBC!!

    Julie

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited March 2008
    Good Morning Jewels,
    Another beautiful day in Lincoln.

    So, I met up with a gal from our district who was diagnosed the day right after me, her birthday, crappy b-day gift.  We had talked prior to my surgery, but then she started chemo and we just didn’t get back in touch, so I called her this weekend, and we set it up for a walk today. We walked 4 miles and gabbed the whole way. Felt good, but wore me out.  I hate being so out of shape, but it is what it is right now.  My hip flexers are sore this morning, but yoga (our district offers a wellness program now and classes are offered at different sites after school) this afternoon aught to help stretch them out. 

    Vettegal- Love that hat!!!!  And how great that people you don’t even know want to hug you and wish you well.  Bummer, from 70 to cold in no time, eh?  Just a teaser day.

    Wvgirl-sounding really good yesterday.  Hope you had a fabulous day after the laundry was folded.

    Dana- Go get ‘em Little Warrior…I’m sending you Super Girl vibes.

    sftfemme65- I don’t even know what that is.  I’ve gotten some blisters.

    Carol- I don’t know if Blue Cross and Blue Shield are the same or not. I’m having a hard time getting billing statements from my plastic surgeon and anesthesiologist’s office for some reason.  I have a supplemental cancer policy that reimburses me co-pays and things insurance won’t cover like my wig.  Good luck with the sleeve thing.

    Kathy-I’m with you on just taking it as it goes…if the list gets done, great.  If not, oh well. Enjoy!!!!

    Julie- I know I’ve got parents cursing me under their breaths when their kid have a project due on a Monday.  Of course, I know you know about procrastination, but some parents think it’s me giving a kid two days, a weekend, to do the project. When I got those not so happy calls and had to explain their child had over a week- from weekend to weekend- to do it, things got warmer towards me and cooler towards their child. Your son is so lucky to have such an understanding mom…and you deserved to have moments of impatience… willing to help him out.  My poor son had to deal with, “ Hmmm, a lack of planning on your part does not constitute an emergency on my part. What is your plan to get this done?”  I’m so mean. I say that to my students as well when they give me their why they don’t have their work ready to turn in whine.

    70 degrees to freezing in 24 hours,geeze, and a snow day to boot. At least the project is done. Hunker down and stay warm. Hope the internet stays up and the power stays on.

    Well, I’m off to get ready for a lunch date with a friend and then who knows what else before yoga at 4pm.

    I’ve already shouted out to Dana…kick some cancer booty today CathyCa…I know you’ve got your puter with you as you lounge.

    Have a great day Jewels,
    SIS Kimberly

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  • Determined1
    Determined1 Member Posts: 806
    edited March 2008

    So I imagine CathyCA and LWDana are on their way by now.  Go get em girls!

    And I can't believe that Carol and CHJ are up for round 3 tomorrow!  Have your capes and glasses at the ready!  Time to f*ck with some cancer!!!!!

    So Vettegal--that hat is awesome!  And you look so happy in the picture!  I never took any in my infusion center--not sure I would've liked the results.  You look simply mahvelous, dahling.

    Oh, Dana, when you get home--I agree with the info from KathyL re: the mouth sores.  I really stepped up the baking soda rinses this time and the only part that's been bad so far is my tongue.  (Can't wait for that to come back--haven't had a tongue/tastebuds for 6 weeks now.)  So be diligent with the baking soda rinses and I think you'll be better off than I was.

    KathyL--I'm having a racing heart this time, too (I think I had some trouble last time, but this is more pronounced).  Haven't called anyone about it, figuring everything passes in a couple of days, but maybe I'll mention it tomorrow when I go in to interview a rad onc, just to see how he reacts in real time.

    Okay, so I'm pissed.  I saw my surgeon yesty for my post-chemo/pre-rads checkup.  First of all, I waited 40 minutes to get in to the exam room (and I was 10 minutes early for my appt, so it was a total of 50 mins!).  Then, he rushed me.  Totally disregarded my concern for my le (said it would resolve on it's own in a few years as long as I got a sleeve for flying).  Was unconcerned about the cording, saying I should be using my arm to "crawl" the wall to work that out.  When I asked about my clumps of scar tissue, he said, rather than do anything (I was asking about massage to get rid of it--nothing SERIOUSLY medical), he'd wait 6-8 months and see if it resolved itself.  I told him that one of the clumps was in the rad zone and shouldn't I do something before rads cause I might not be able to after.  He said, naw, wait it out, see what happened in 6-8 months (we were getting into a vicious circle, so I dropped it).  He then said he wanted me to have a mammogram on my left side b4 rads, and I told him my last mammogram was clean and 2 weeks later I found a lump.  I wanted something more than a mammo.  He said mammos were good and I was the exception (I know from here that's just not true).  But here's the kicker--I asked him if he wanted to follow up on a suspicious spot they saw in my MRI in my lungs now.  He said (direct quote), "What spot?"  I told him to go look at my file and I'd get dressed and meet him at the front.  When he came out, he said, oh yeah, forgot about that, you need another CT scan, too.  Now, what kind of doc is that?????  If I hadn't been keeping track (and what am I missing?), he might have not reviewed my spot (which I choose to believe is nothing, because I'm SOOOO past all of this).  Upshot--I've been spitting nails (when I haven't been dozing off from exhaustion) since the appointment.  I've put out an APB to get the name of another surgeon who plays well with my onc and I'll be interviewing soon, I'm sure.  Whew.  I feel better.  (But I'm with you, Sheshe, it is hard to change horses midstream--I hope I do as well as you seem to have done.)

    On a happier note, my le specialist said that the wrap I wore yesty seemed to have made some of my swelling go down on my torso.  Today we're revisiting the torso and trying to get at my shoulder blade/arm pit.  Interestingly, she went to a conference this morning with a bunch of docs from our local hospital and my surgeon's partner was there and said in front of the group that meeting with le specialists to learn more about their services was a waste of time, since surgeons are doing more SNBs, which, in his opinion, would not lead to le.  My specialist was beside herself, because, she says removal of ANY lymph nodes puts a patient at risk and the last time she checked the sentinel node is a lymph node.  (We were ranting about this surgeon's office...)  Funny how small the world can be.

    Oh, Carol, I asked my specialist if it would be a good idea for you to just order a sleeve online since your ins is balking.  She said you could, but you should really call a lymphedema specialist and just chat over the phone to get some guidance.  She said she frequently takes calls and never sees the patient, just to help them get what they need.  I can't remember if you already have symtoms or not, but if you do, she thought a fitted sleeve would be better (I know, they're always selling something).  She has told me that I could order fashion sleeves (this sounds a little sick to me) on line, but they would not provide as much support/protection as a fitted sleeve, but if I were having some swelling and really needed a leopard print sleeve to make my outfit, online is the place for that.  She said you might be able to find an le specialist close to you by visiting the National Lymphedema Network website, www.lymphnet.org.  I haven't been there, yet, just got this today.  But you may want to check it out.

    SEs?  Right now the worst is my poor tongue.  It never fully recovered after tx 2 (I've been gutting it out) and now it just feels like it's been so badly burned that it will never be the same.  Even chocolate isn't getting through (although the dh keeps making choc mousse and choc pudding, thinking I can taste it and it will make my nails/hair grow--I just gag it down.  Don't have the heart to tell him.).  Of course, you'd think this would mean I'm losing that 12 pounds, but NOOOOO.  I know I have to eat, so I keep making deals for myself--you know, eat 7 grapes and you can stop.  Eat 6 bites of sweet potato, etc.  It all tastes like shit and hurts my tongue.  Drinking is much the same, although I'll discover that I can taste Gatorade and the dh will run out and buy a bunch.  Then I realize that I can't taste it anymore.  So I tell him I can taste Smart Water, so he buys a bunch.  You should see our garage--quantities of undrunk beverages stacked everywhere!  Even my beloved Vernors isn't cutting through this time.  Waaaahhhhhh!

    Well, well, well, that was certainly a bitch-fest, wasn't it?  You wouldn't know I'm feeling better, would you??????

    Oh, feeling that heartburn feeling.  Gotta go take a Pepcid!

    I love this site!!!!!!!

    D1

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited March 2008

    D1- Man, what a day you've had.  I  can't believe your surgeon was so abrupt.  It's almost like he's saying, 'as long as that has nothing to do with removing something, it doesn't have anything to do with me.'  A spot on the lung would be something a surgeon would want to check out...it might n.eed to be biopsied afterall...that requires a surgeon. I noticed he perked right up for that once he 'remembered'.  GEEZE!!!!!

    Good info on the sleeve and LE.  I've had what I think is le swelling and both my ps and onc. say no, I'm still healing.  Then why does it feel worse at times than at others?  I will broach the subject again on Monday before chemo with the onc.  It's been almost 3 months since surgery...3 months on the 6th.

    Oh, and the taste bud thing is annoying, isn't it?  The alternating tastes good/doesn't taste good thing is crazy. I too have to force myself to eat, but it sure doesn't seem like the extra pounds gained reflects that much. Maybe it is more my sedintary lifestyle these days than the eating, not that I always eat the very best things for myself all the time.  I'm more and more trying to watch what I eat, however, as I don't want this weight to skyrocket out of control.

    Glad to be here for the rant....it feels good doesn't it?  Hope the rest of your day goes better.

    SIS Kimberly 

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  • Jenn51
    Jenn51 Member Posts: 94
    edited March 2008

    I give up.  I read & sent shout outs, laughed & crying with all of you & then it was gone.  I'll have to try again after dinner.

    I love you all.

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  • vettegal
    vettegal Member Posts: 287
    edited March 2008

    Hey JewelsCool

    D1-i wish you had a better day with those "doctors" Its like we know whats beter then they do....

    Kim-the taste bud issus is an issue. Someone compared it to being pregnant, which I never was..so i have cravings..like nachos and cheese..i could eat them every night!!

    Julie-Amen to "aunt flo" going away. It is weird, i keep expecting it to show up at any time!!! I had alot of fun with my hats, haven't worn the wig yet or a scarf....

    Had a great day..another one of my customer brought me in a 14k blessed mother charm, it was gift wrapped and again I am touched by the kindness of all these people and my boss is still an asshole!!

    Hugs to all..xxoo

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  • RN2teach
    RN2teach Member Posts: 312
    edited March 2008

    Hey Gems,

    Vegging out in the recliner this evening after a long day at work. Stayed after yesterday and today to work w/ students. They are doing really well and excited about their competitions this weekend. I need to rest up so I'll be able to keep up with them for 3 days!

    Dana and CathyCa- I hope your treatments went well today! Congrats, Dana on losing your chemo cherryTongue out. Cathy: one more to go! 

    KathyL- you are so lovely! And your babies are beautiful--I had a major "ohhhhhhhh" moment when I saw them!

    My Bday is 11/15/61.

    Julie- congrats to ds on his 1st and 2nd places last weekend.

    Vettegal and CHJ-- I've got that hat, too!!!

    D1- your surgeon needs a good smack. It makes me cringe for all the women out there who won't, can't take charge of their healthcare! Doctors can be soooo infuriating!!!

    Jenn- hey girl! I hate those computer glitches.

    Carol and CHJ- you're up tomorrow for the chemosuite--Good luck!!

    Wishing all the Jewels a sunny day tomorrow!

    Paula

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  • JulieK_11_30_07
    JulieK_11_30_07 Member Posts: 260
    edited March 2008

    D1 - Man, you had a hell of a day! Sorry about the surgeon being a butt. I'd say you're smart to seek out one that's more interested with your concerns! I haven't had the tounge issues - that stinks! I do go through things tasting/not tasting good, but my tounge still seems to be working.

    Kimberly - Yah, I go through that with parents getting mad at me too when their child puts something off that's due and they've had plenty of time! Fortunately, for my ds, it was my fault since I was out for two weeks again with tx #3. I kept telling him we'd get to it when I felt better. He had the research all done and we just had to figure out what to put on his board and how he wanted to organize it. Sure took longer than I thought it would!

    Jenn - glad you checked in - hope you're doing okay.

    Kalen - thinking about you - hope your se's aren't too bad after your first tx. Hope you check in with us when you're feeling better!

    Well, Jewels, I was pooped this afternoon and ended up taking a 3-hour nap -- hope I can sleep tonight! Hope our girls with treatments today did okay. Don't remember if we have any tomorrow - I'll have to go back and check and give shout-outs later.

    Time for American Idol --- gotta scoot! Take care, Jewels!

    Julie

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    Good Evening Jewels,

    Looks like an afternoon at the "bitchfest".  Couldn't be a better place to vent and have many relate to the situation.

    I know I'm tired tonight as I got a call from my best friend to hook up for dinner, as well,my sister-in-law just called and asked if we would like to join them for dinner.  I walked in the door at 4:30 and couldn't wait to get in my sweats and veg out.  Oh, and check in with my fellow Jewels.  Me turning down a dinner out is not the norm for me.  Planning on a Papa Murphy pizza and salad, (my way of cooking lately)!

    D1, I'd be ready to blow a gasket if I had the day you did with your surgeon.  I bet his demeanor was a little different when you went to see him about your initial surgery.  He responded to you now like a real DH! 

    Thanks for your info on the le sleeve.  I have not been diagnosed as having le as of yet.  My whole point to the referal center was that I'm trying to AVOID the onset of le.  Seems like in the long run a $100 (or so) sleeve is a heck of a lot cheaper on everybody than numerous appts with a pt and docs if le appears.  Anyway, my pt is a le specialist, and I now think I went about the whole thing in the wrong way.  I asked for the referal thru my primary doc (who doesn't really have a clue whats going on with me) but supposedly all referals go thru your primary.  Anyway, I made an appt with a place that fits people for the sleeves and are very aware of the potential le problems.  The company contracts with my insurance, so I'll make sure I have my sleeve prior to the 22nd.  I called my pt today, she is going to make a call to the referal center, as well I see my onc tomorrow and I will have him also request the sleeve for me. 

    Jenn, oh I can feel your frustration with the computer wiping everything off your posting ... had the same thing happen recently.  I know the second time around I wasn't half as riveting as my original post!!!

    Paula, sounds like your going to need all the recliner time you can get prior to the weekend, hang in there gal!

    Julie and Kimberly, don't you know its always the teacher's fault!!!  Oh, thats just my son who says that.  We have full access to up-to-date grades, assignments, etc., and anytime I see something out of whack, my lovely 15 yr old always has an excuse and then says something about the teacher not having input something ... its amazing how if I bring up e-mailing the teacher sometimes the story changes, hum???  Teachers are definitely the true SHERO's/HERO's in my book.

    Vettegal, my goodness gal, your raking in the loot at work.  Thats got to be a mental boost,  wish your boss would get a clue and stop being a DH!  Boy thats twice already this post that I had to use the DH word, and I havn't even gotten to wvgirl yet. 

    wvgirl, hoping that your dh is still on the straight and narrow with his attitude.  It has been sounding like he has been slowly coming around.

    Kimberly, sorry to hear of your co-worker being (one of us).  Boy, I sure find that if you can chat with someone that relates to this whole process its great for the mental health of it all.  Sounds like you both got a work out as well.  4 miles is a long haul for any of us at this point.  I'm not hearing of too many of us hitting the exercise routines too much these days.  9 holes of walking the golf course and I'm pooped for the day!

    Dana and CathyC, hope that you both had uneventful days at the chemotini lounge, and wishing you a good nights rests.

    Time to start cooking (turn the oven on and put a pizza in it, whew that will wear me out), may try a glass of my lovely non-alcoholic wine, yeah, NOT!

    I'll be lurking throughout the eve, night all, Carol

    . 

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  • tinalee123
    tinalee123 Member Posts: 112
    edited March 2008
    Good evening gems!  Been a little absent these last few days, so am catching up on all the news!  Dh and I went out for our traditional fish fry (during Lent) last Friday night and I actually had a beer!  Oh, did it taste wonderful!

    Carol – love the pic!  ds #2 has been asking for a weiner dog for the last two years.  I think they’re the cutest things…how can you not smile when you see one?

    LC13 – I am glad to hear about your experiences with Taxol, as that’s where I’m headed on Thursday.  I am really nervous about it…I think I’ve been freaking myself out a bit and perhaps been undigging a ittle too much information by googling ‘taxol vs. taxotere’. 

    Sheshe – hope yesterday went okay…thinking of you and sending wishes for mild se’s.

    CathyCA – YAY!  Mild se’s thoughts are heading your way!

    Dana – Thinking of you, strong one!

    Wvgirl – I’m so happy about your dh, as others have said, this is some of the best news we’ve heard! 

    Teresa – Welcome…I think you’ll find this to be a caring, supportive and thoughtful group.  I, too, start taxol this week.  I’ve also heard about the reaction during treatment.  Don’t worry, though, I’ve been told that the nurses keep a close monitor on you.

    KathyL – You look great, beautiful lady.  Thanks for sharing the pics.  Sweet kiddos!

    Paula – YAY for half-way!!!

    Sista – Can I come with on the beach vacation????  They are forecasting another couple inches of snow and teens for temps.  Ugh…I am so sick of winter.  Can ya tell???

    Vettegal – Great pic! Nice hat! My dh said I should wear my FUBC shirt at my next treatment and give “the bird” and he’ll take my pic.  He’s so naughty…tee hee

    Kimberly – I so admire your ‘yoga courage’.  I’ve always wanted to do that…but, never did – never made the time for it, truly.  I’ve read that it can really help with the overall flexibility and general well-being.  I need to get on that wagon. 

    D1 and Carol – I have been following your le talks.  They’ve been really helpful for me.  I can’t decide if I have it actually, or not!  The first week after surgery, the right arm was quite swollen and the surgeon immediately diagnosed le.  Although, I still had my drains in.  dh and I were thinking that the right drain wasn’t doing a very good job (as compared to the left), but, we couldn’t find the hold up.  Then, ps yanked the drains out (hello!) about 8 days after surgery.  Swelling has gone down considerably since.  Seems to me right arm is very slightly larger than left, and, I still have a wee bit of numbness on the backside of the bicep.  I haven’t yet been to pt – would you both suggest that?  Kimberly I think you see a pt, too?  I know air travel is in my future, so, I am thinking sleeve for sure.  Opinions and thoughts are welcome.

    D1 – Sorry your appointment went so poorly.  Damn about the se’s, too!!  I’m sorry, but, I did have to laugh about your dh running out and buying mass quantities of the latest good stuff…then, it’s not so good.  Our house is the same way…

    Jenn – I think this may be Kimberly’s idea…but, try typing everything into Word first.  Then, copy and paste it into the posting box.  It works!! 

    Therese – I love your story about the concert with dd & friend.  You’re so cool! 

    Wishing all the gems a good evening.

    Tina

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  • LilWarrior
    LilWarrior Member Posts: 268
    edited March 2008

    Today was a very long day - I started at 9:45 and stopped at 4:45pm AND THIS IS WEEKLY. NOT EVERY THREE WEEKS! GOSH, I wanted to get sad but I said to myself Dana there is so many people out there  doing worse, no pity party for you so pick up your chin and smile and realize that God is allowing this for a reason.

    I had taxol, steriods, nausea, bendaryl, and decradon all today.  I got up about 7 times and walked around cracking jokes on the Dr and the Nurses and went down stairs in front of the Hospital. I just think for me its mental healthy and better for me to keep walking around and making people laugh, smiling and talking to others - its helps me.  I just cant sit in that chair forever.

    Kathy, I havent gotten a port yet - I will when they recommend it.  Dont want to rush another DR APT - I am just too busy to do this right now.  I just leave it all into Gods hands.

    Rn - you are so cute - My chemo cherry - I was a virgin but no more.

    Did I mention with the steriods I took prior I didnt sleep a minute last night - and I am not kidding not a minute.  I am so wired off this junk.  I got dizzy from the nausea meds and a little sleepy from bendaryl but I couldnt go to sleep cause they gave me more steriods.  THANKS...

    I will try all the mouthwash remedies and Pray that they all work.  

    God bless you all - sorry so short and that I dont address or comment to each one of you but really I am so busy with school, home and chemo and I know you all are too - So please forgive me but I love you all and I dont forget about you in my prayers daily and nightly.

    God bless,

    Dana -Lil Warrior! 

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    Oooops, forgot my shout out to CHJ, I'll be thinking of you tomorrow as we're both at the chemotini bar.  I'll pick up the tab, hope its happy hour!!!

    D1, also I'm with you on the mamo vs. mri, my mamo didn't do me a darn bit of good!!!  I highly suggest to my friends to try to become best buds with their boobs, yes get their mamos (digital please which I did not have, didn't even know that there was a difference 4 mos ago).  More importantly I think every woman needs to know if something seems a little different up top.

    Okay, back to lurking ... and this na white wine isn't that bad!

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    Tina, we have two of weiner dogs, with totally different personalities.  They are quite the characters, but be for warned if you get one, you will suddenly be sleeping in their king/queen bed!!!

    I would suggest seeing a pt that specializes in le, especially since you had alot of nodes removed.  I had measurements taken of both arms (I just had one side whacked on).  My right arm which is my "bad" side was just a little bit larger then the left.  I was told that its probably just my muscles being larger on my dominent side.  I am also still numb in the armpit as well as down the back of my upper arm.  Its kinda a weird feeling on the back of my arm, kinda numb, but very sensitive as well.  I was taught some massage to move the lymph fluid and I have a array of exercises.  Good luck!!!

    Dana, yeah, one under your belt ... you certainly sound like you we're on a steriod high today ... hope you get some rest this evening.

    Carol

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  • JulieK_11_30_07
    JulieK_11_30_07 Member Posts: 260
    edited March 2008

    Carol and CHJ - go get 'em Wednesday girls! FUBC!!! Carol - glad your wine's tasting good to you tonight!

    Dana - good to hear from you - sounds like a very long day! Glad you could get up and walk around - they don't encourage that at my center. Not sure where they think we'll go! They don't even let anyone come back to the treatment room with you, which I don't like. It sure would be nice to have someone to gab with! Hope you se's are minimal -- remember to take it easy and listen to your body -- don't try to do too much, little warrior!

    More tomorrow, Gems. Good night!

    Julie

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  • chj127
    chj127 Member Posts: 382
    edited March 2008

    Hi all,

    Well, I'll be off to chemo shortly.  Thanks, all for the well wishes!  I've been feeling really good for a week, and hate to see that come to an end.  But the cold is practically gone.  I'm hoping for one tx with no other illnesses this time!

    Dana - I'm with you.  I took the steroids yesterday, and got very little sleep last night.  I was going over and over and over everything that's on my mind, and then we had some heavy rain overnight, and that didn't help things much.  Tonight I'm going to do the drug smorgasbord - steroid pill, Tylenol PM, Senokot, and whatever else I need!!!

    Have a great day, everyone, especially Carol & anyone else joining me at the chemo bar today!

    Love you all,

    CHJ 

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited March 2008

    Carol and CHJ -- good luck with today's round.  May your SEs be few.

    Dana -- glad your first round went well.  Listen to your body and take it easy.  If you have any problems, call your onc and see what can be done.  There are so many options for treating SEs. 

    D1 -- sorry your surgeon is being so difficult.  I switched surgeons right before my surgery (which delayed it a few weeks), because I just didn't like the vibe I was getting.  One of my friends who had bc three years ago said it was critical to have a surgeon you can work with because you'll be stuck with this person for years.  I'm so glad she pushed me to change.

    Kimberly -- glad you enjoy yoga.  I try to go 2-3 times a week.  Yoga breathing has helped me get through many procedures the past six months!  I don't have anywhere near the flexibility I did in my younger days, which sometimes discourages me, but the instructor whose classes I normally attend pushes that it's about progress not perfection.

    I sailed through round 3 which made the onc happy.  The treatment center is a large lounge, so you can hear the conversations and it sounds like several patients had problems with their last round.  My blood counts are all high and SEs practically non-existant.  I'll be off to the gym for my four miles on the treadmill and aqua aerobics classes and then Russian History before my neulasta shot.  Have a good day all.

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  • Determined1
    Determined1 Member Posts: 806
    edited March 2008

    That was one heck of a rain, last night, wasn't it CHJ?  I was up all night in Arlington, VA listening to it (okay, I dozed off some, which I'll tell you all about later).  I was worried our basement was going to flood (it has 3 times in the 14 years we've lived here).  Last time we spent a lot of money on a new drainage system and the dh went downstairs this a.m. and yay!, all was good!!!

    So, SIS Kimberly, when I read your post a light bulb went off (okay, I can be a little slow sometimes, but now I can blame it on chemo brain!).  You're absolutely right about my surgeon.  He's very attentive when he gets to do something, but doesn't have the time of day for me when it's non-surgical.  I can point directly to the scar tissue in my breast, which in January caused him all sorts of concern (you may remember he even needle biopsied it), but this time, he's saying, oh just wait 6-8 months and see if it goes away!  The writing is on the wall.  I'm a little frustrated that my APB hasn't yielded any names, yet, but maybe I need to be patient--not everyone in my network here is as obsessed with medical care as I am right now.

    Oh Vettegal, it warms my cockles (not sure what a cockle is, but the word is tickling me today), to read about the generosity of your customers.  And this comes at a good time for you.  Try to shrug your boss off as the DH that he is and know that you are important to/appreciated by much finer people.

    Paula--you sound so strong and upbeat!  I can't believe you had tx on Friday!  Keep it up, girl!!!!

    Tinalee--you flip away, girlfriend!!!  Oh, I can almost echo exactly what Carol says about numbness.  My bad arm is the left (I'm right-dominant) and it's numb in the pit, down the underside to almost the elbow and around the back over the shoulderblade.  My last surgery was October 15, so I'm 5 months out!!!  I have significant wads (medical term) of scar tissue in my armpit and another actually an inch above the incision on my breast.  I have also developed cording (an le se) that starts in the scar tissue under my arm and extends about 1/2 way down to my elbow before it disappears into my arm.  Cording is just what it sounds like--feels like tendons that are too short and you can actually see them through my skin.  Makes straightening my arm painful/impossible.  Please, please do stretching exercises all the time to try to avoid cording.  I was doing okay till a few weeks ago when I reached for something too heavy overhead and my arm snapped (no joke) and then I had all this pain and restricted motion.  My le specialist says it will go away with time (either by snapping again to break the cord--I'm looking forward to that--or it will just be absorbed by my body).  If your doc is amenable and you have an le specialist in the area, it wouldn't hurt to have an evaluation to be measured and checked for le.  Even though the appointments are a hassle, the le massage has been very restorative for me.  I want my le gal to move in so I can have one every day!

    Carol--hope the pizza hit the spot.  Oh, and you know, I'd get the sleeve.  You may remember when I was name-dropping over the holidays that I sat next to Hoda Kotb from NBC on the train?  Well, she was never diagnosed with le, but she got a sleeve for flying, too.  Preventative.  Le is serious, whether some of our docs believe it or not.  You've all seen those older women with one giant leg?  Well, that will be our arms if we don't pay attention.  My le specialist said at first she wants me to always wear my sleeve when I fly, particularly if I'm still having some fluid, but that eventually, I may be able to control the fluid with massage and get away with flying on short flights (under 1 1/2 hours) without it.  Sorry to sound like such a zealot, but I'm experiencing discomfort/pain from le and I now know it's for real.  I don't want anyone else to have this.

    LWDana--You made it!!!  The final sparkle is on the Jewels!  Be ready to be a little buzzed all day today from the drugs.  And do all your preventative stuff, even though you have no se's today.  Learn from the rest of us that it's better to be proactive than it is to wait till something's wrong.  This is all manageable.  We're here!

    Okay, so my dream from last night.  It was one of those repeaters.  I kept getting a phone call from a woman asking me about my magazine subscriptions and while we were talking, I'd open my eyes and the woman (dressed in a black burka) would be standing next to my bed.  I kept jerking awake and she'd go away.  Weird thing, every time I had the dream (3 times) the woman was closer to me and the last time she was reaching out to touch me.  Put me into my night sweats, which soaked the sheets (and I'd just washed them yesty--figures).  Not sure what it means, but I'm taking a book to my appt today--no more magazines!  Anyone into dream interpretation?

    Hmm.  g2g (I always do this).  I have 40 minutes to get my house ready for the cleaners, shower and get to my le appt.  AND I have my back spasms today (I'm trying to bouy myself by repeating it's the last time, it's the last time!).

    Later sparkles.

    D1

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    Good Morning Ladies,

    Well the pizza hit me right in my GI tract last night.  I think its my night before txt nervous stomach that kicked in.  Feeling fine this morning thank goodness, and will be heading to my appt with a very "clean" lower unit!

    Kathy, thinking of you this morning, hoping that you are going to be able to attend Wendi's memorial today.   

    Need to wake the ds, lucky him, he gets a hour sleep in on Mom's txt day!!!

    Hope you all are feeling decent if not great today ... be back later,

    Carol

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  • KathyL
    KathyL Member Posts: 534
    edited March 2008

    Wow!  I had a lot to read this morning.  It's almost 11, and I'm still in my pjs.  I should've come down to my 'puter at 2AM to read when the storms had me up for hours.  Now the sun's shining here at least.  I don't have much to do today anyway that can't wait 'til tomorrow.  Tonight is Wendi's memorial and I should be able to make it with one of my BC friends once dh gets home to take over getting the kids to bed.  I spent most of my early morning awake time thinking about what I want to do about work since I'll be done with chemo soon and won't qualify to stay home on disability then.  I HAVE to work b/c we need my income, but I don't really want to.  (sigh)  Why can't I win Powerball?

    D1:  Girl, it sounds like time for a new surgeon!  What a DH!  Do you think if it was his you-know-whats swollen and painful like your LE arm he'd wait 6-8 mos. to "see if it resolves"?  Doubt it!  Even if it's not a "surgical thing", he should address your concern and point you in the right direction.  Sheesh!  Glad to hear your le specialist is helpful.  And by the way, even your rants are funny :)

    Julie and KImberly:  still gotta say, I love teachers.  It will be interesting when I'm the parent this fall with dd starting kindergarten (which I know is not much, but it's still school).  I'm sure I'll have some stories to tell you both.

    Tinalee:  Yes, see a PT!  I had my left mast. in Oct.  Had almost immediate cording with decreased range of motion and pain.  Saw a special PT for BC patients for about 2-3 months, and I'm great now.  Full ROM, and lifting light weights.  I only had 3 nodes removed, so I'm sure I bounced back sooner than some, but the PTs help everyone out-- it's so worth it.  I think anyone who's had BC sugery should automatically see one, it's that important.

    Dana:  What a long day!  Mine are very similar.  It forces you to slow down.  I agree with what everyone has already said-- go easy on yourself in the next few days, and remember we're here.  Round one is your learning round.  

    Cathy-CA:  You are amazing!  What a full plate you have.  I hope to be as active as you one day, really :)  Exercise, classes-- all sounds like fun.  I'd love to learn another foreign language someday.  I took Latin and French for years, and knew some Italian, Hebrew, and German also.  But I haven't used any of it, so most of it is "gone".  Someday...

    Well, I guess I should at least hit the shower.  Keep the birthdays coming.  I'm going to put them all in a calendar and then post upcoming days just like I do for the treatments.  Catch ya later, gems.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Tina, you made it through Dose Dense AC, I'm confident that you'll find Taxol to be a much easier Tx experience. A lot of people do have reactions, but even if that happens, the nurses watch you like a hawk the first few times, they'll be right there for you. And the side effects are so much more tolerable, I barely feel like I'm on chemo any more.

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  • Determined1
    Determined1 Member Posts: 806
    edited March 2008

    Rad report.

    First of all, he's no McDreamy, but this is the cutest doc I've ever had.  He's been doing breast rads since 2000, so he's quite young (also new for me, but I guess at 50 I should get used to that).  And he has a fab sense of humor!!!

    Upshot of my case is that he said they try to give the lowest rads possible to patients, but because I have lymph node involvement, I get a little extra (lucky me).  I have 6 weeks' worth--5 days a week.  He said that by week 5 I will have a burn so bad that I won't want to wear clothing for a few weeks till it heals, but that he uses creams and salves that they currently use for serious burn victims, so we'll do the best we can to manage that.  He said my skin will be compromised, but he strongly recommends against any cosmetic fixes to my breast till after because rads will change my breast.  If I fix it now, I'll probably end up fixing the fixes!  He said that because my lump was on the top of my breast, I should still be able to get things tidied up and be happy with the result.  (Good tumor placement--yay me!)  I will have two, maybe three rad sites (they will give me permanent tattoos for those) one or two on my breast and one in my lymph area (armpit).  From what he can tell of my angles, I can expect to lose 10% of my lung capacity (it may come back with time, but no assurances), and increased risk of rib fractures under my left breast.  My heart will not be radiated at all, so I run no risk there.  We talked about alternative positions during rads (ie. I lay on my tummy to save my lungs), but with my angles, he thinks I receive no benefit.  The part that brought tears to my eyes was when he said my rad regimen will certainly exacerbate my le and he said I could have irreversible swelling.  He was pleased that I was already seeing a le specialist and encouraged me to keep it up (I think he'll most def help me get extensions for that), to try to do whatever I can to save my arm.  So that part is pretty f*cked up, but what can I do about it??  I'm going to be as aggressive as I can on the le for the next month to try to be in the best possible shape and hope and pray that my karma is good for this.  He said he'd call me Monday to go over the tests/scans he wants me to have.  (I took my reports and disks in with me and by the time he sat me in his office, he'd already seen the spot on my lung and wanted to make sure that was okay!)  I liked this guy enough that I'm not even going to interview anyone else.  And I only had a couple of spasms during my appointment, so I take that as a good sign.

    That's the story so far.  I'll let you all know what happens after he calls on Monday.

    LJ13--so glad to hear you barely feel you're on chemo anymore!  That has to be good news for those following you on to Taxol.  Do you really go in every week for tx?  Or do we have it wrong on the header?  If you do, I think you're headed to the bar tomorrow, right?  If so, bottoms up!

    Also, FUBCs to Julie, Tinalee (first T), AZDonna (first T), and Sista2 (last AC)!  Go get um tomorrow Jewels!!!

    Hope everyone is doing okay today.

    D1

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    D1 yep, I'm weekly now, but this week only I'm on Friday not Thursday. I have 10 more to go.

    I'm sorry about the rads situation. Sounds like he really laid it all out in painful detail. I'm glad you shared that with us because I really had no idea all the not-so-good consequences that attend radiation therapy. I don't think I'll be in that mode until this summer some time, maybe June.

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited March 2008

    Good Afternoon Jewels,
    I've spent all morning doing research on the American Cancer Society website. They have this great Treatment Tools section that matches your dx to different tx's, discusses side effects, and offers research based on your dx. Of the research I did about radiation therapy, as I'm not so sure I want to do it, there are 6 studies that fit my dx that all point to no significant increase in overall survival rate for someone with a mastectomy, so I figure having done chemo already, my odds are even better than mastectomy alone. One 20 year study even pointed out that among the deaths from breast cancer reported in women with mastectomy alone, 13.2%, proved less than the 21.2% due to causes from radiation side effects and not breast cancer. The study concluded, "that with such modest results and no improvement in survival, the cost and toxicity of post mastectomy radiation does not justify its routine use."

    I'm armed with lots of questions for my oncologist. I don't want to just blindly follow what I'm told because that's just the protocol. D1- Keep that burka'd woman in your dreams, OK? Reading your shout out will clarify this for you.Surprised

    Jenn51- Sorry you lost your post. That is so frustrating. Hopefully, you'll return late and fill us in on how you are doing.

    Vettegal- Another gift from a client. Innocent You are so loved, girlfriend. That has got to make up for the boss's lack of compassion.

    Paula- I'm so glad you've been able to hang out with your kids after school, and that you will be able to attend their competition this weekend. Can't wait to hear all the news upon your return.

    Julie- So glad your ds was prepared, but just waitin' on mom to help him with the logistical part. That's got to make you proud!!!!! Hope you got some sleep after Idol last night.

    Carol- I have a website of my own, but I'm not allowed to post grades on it. I put up the weekly agenda and have handouts they need to download and print. Kids without access can do this at the library on Monday mornings or during SSR. It shocks me though how many kids won't log in and how many parents won't check it either.

    Hope your sleeve saga turns out and that your pizza and salad were tasting yummy (heck you next message stated it hit your stomach wrong...bummer), and that your trip to the chemotini lounge doesn't bring on a hangover.

    Tina-Hey stranger. Glad to hear from you. No, I don't go to pt, but think I may be experiencing le. I'll be talking to the oncologist on Monday about that. WhooHoo on the beer tasting good!

    Dana- Every week? Man, you won't have any recovery time.
    Taxol, only? Well, the Decadron will keep you going, I guess. Try taking the evening dose earlier in the day like 4pm, and then take a sleep aid. You've got to get some sleep!!!! If anyone can do this, it's you Little Warrior. I love that you're able to get up and move around. I'm stuck in a chair for three hours except to pee.

    CHJ- Hope Carol picked up that tab for you, and that you both had a good visit to the lounge. Here's hoping that you make it through this one with no hangover and no other illnesses.

    CarolCA-Wow,it is a good thing that your aqua aerobics class and Russian History class are on a night you're high on Decadron. I'm thinking a few days from now, doing 4 miles, a water class, and a night class wouldn't appeal much to you.

    D1- Hmmm, magazines and a woman in a burka? What associations do you make with magazines and then to women in burka's? My first thought is women in burka's are not allowed to question men or anyone in authority. They are often not educated, thus her interest in your magazines maybe? Are these dreams after frustrating encounters with people like your surgeon when you're trying to take charge of your own health care choices?

    Kathy- I am so glad you'll be able to make the memorial tonight. It's 2pm here, and I'm still in pjs if that makes you feel any better. Oh, Kindergarten isn't what it used to be...at least in CA. It's not snack time, playing to hone social skills, and being read to anymore. Kindergarten kids have homework! It is so wrong.

    Hey LJ13- Glad you've feeling perky!!!!

    OK, that was some catching up I had to do.

    Well, got to go shower and hit the lab before too long.

    SIS Kimberly

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    Hi Gals,

    Home from the chemotini lounge, my WBC we're low again, but my doc said that he hopes its just a cycle like last month and they'll continue to rise this week.  Does the WBC number 2.8 mean much to you all?  The chart I saw said it should be between 4.5 and 10.5.  Now I know why I don't have much energy left after work. 

    My infusion was uneventful, the mil took me again (I still like to take a lorazepam) to mellow me out a bit.  Went to lunch (had a great crepe).  Back to mil's to let my drugs we're off a bit before heading home.  Decided to stop and get my oil changed, and low and behold the ol' GI tract started to do the wa-too-see!  Thank god Jiffy Lube has a decent bathroom, as I don't think I could have shuffled across the parking lot to Safeway.  Needless to say I'm glad I'm at home for the time being, have to go back out to take ds to skate practice, called his dad and asked if he could pick him up. 

    D1, thanks again for all the insight on the rads, doesn't really sound like a walk in the park.  I'm glad you found a doc who you can gel with.  During this whole experience I never knew just how important that really is.  Did you not have good margins?  And does it sound like they automatically do the node area if you had positive nodes?

    Kimberly, I saw on another post (tamoxifan) that you have raised numerous questions on the whole ooph/tamoxifan deal.  My mind has kinda been on overload with the whole thought of it.  Hope you don't mind but I'm taking advantage of your research and snooping in when I can.

    Whats up with these kids not checking out your site at school, and worse the parents not being up to snuff with it.  I would have hoped that my ds would have been like his step sisters, but no, we do have to stay on top of his school work, and basically on a nightly basis.  Thank god that he loves his skating so much that we are able to use it as a negotiating tool, if the grades drop no skating session just for fun.  We do let him train with the team, but I'm still holding out on a skate meet in Portland on the 15th til I see his grades this Frid.  So far he has managed to pull it together when he needs to.

    Going tomorrow to get fitted for a compression sleeve.  My onc will be writing a letter to the "Clinical Review Board" (I just picture a bunch of old people stamping "DENIED" on lots of paperwork) at that Board.  My mil asked if I wanted some company, we'll be going to Bellevue which is right outside of Seattle.  Told her I'll buy lunch and would love the company, she's the coolest!!!!  Hoping to heck that my tummy settles down a bit before tomorrow, wishing I hadn't taken a full dose of Miralax yesterday as I was gearing up for txt today.   I don't want to have to ask Vettegal if she has any spare corks!!!

    Julie, Tina, AZDonna and Sista friend, the bar stools are still warm, time to belly up tomorrow.  Here's to an uneventful infusion to you all. 

    Carol

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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited March 2008

    Kimberly -- I think you are correct on rads with mastectomy.  I've mentioned a friend that has guided me through this journey who had bc three years ago.  One of the reasons she opted for mastectomy is that hers was in her left breast and she had an underlying heart condition.  The doctors assured her that her best option was to do a mastectomy just so she could avoid radiation and further risk to her heart.  She is still doing great and just got back from a missions trip to India.

    I attribute my lack of SEs to exercise, so I'm at the gym for four miles plus a minimum of aquacise and/or jazzercise every day.  I add yoga another 2-3 days a week as well.  Most of the time it makes me feel much better. The Russian History class in the afternoon, but my other two college classes are at night.  We have a mid-term in French cooking tomorrow night, so I need to get chocolate truffles made and in the refrigerator tonight so they can chill to take for my cooking project.

    KathyL -- It's funny, I think of my life as being pretty relaxing now.  When my oldest was in kindergarten, I worked full-time, was PTA treasurer which meant I was in charge of all the fund raisers, was treasurer of our homeowners association and who knows what else.  It just got worse as the kids got older and I added team mom duties, Little League board, etc.   Everything sort of peaked a few years ago and has gotten easier and easier.  I stopped working full-time four years ago when my boys were in high school and I needed to be more available for transportation duties and just wanted to be around more since that's the age when things can start getting really out of hand.  I had been thinking of going back to work this fall when my youngest goes away to college, but will still be on Herceptin and may push that decision off a bit longer.

    LJ -- glad you are finding Taxol to be easy.  I'm on taxotere and carboplatin and find it a very easy combo. 

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  • LilWarrior
    LilWarrior Member Posts: 268
    edited March 2008

    I couldnt even imagine how you women stay in the chair that long, I have to get up and mingle with someone.  I am the only there by noon time so I have to crack jokes on someone.

    Today and last night i had alot of itching, hot flashes and warmth to my face, and arms so i put a cold compress on them, fan and a little itching cream.  Did anyone have this reactions if so please let me know what else can help. I also took a bendaryl last night because I couldnt sleep.  What is another pill I can take to get me up the next morning bright eyed bushy tail?. I got a B on my test today - but I barely passed.  No complaints with that All GLORY TO GOD.  I do have a huge appetite still and I realize greasy food makes my ass burn or it maybe the all the meds but just soft stool no diahearra and tummy cramping once in a while but its not that bad - So far this is a breeze and I am can do it that is if this continues to be like this.

    I am going to walk the dogs in a bit, I am not tired yet but trust me when my body says rest i will rest.  Oh yea I have been using baking soda and water and all the biotene products throughout the day - thank you ladies.  Also they gave me nausea pills but i havent taken them because I dont feel nausea - so why bother taking another drug if its not needed.

    Thanks my Lovely Jewels and I will attach a pic of me today or tomorrow.  God bless you all my wonderful sistas!!!

    Muah! 

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  • golfer779
    golfer779 Member Posts: 1,378
    edited March 2008

    CathyCa, I remember in my post I think last night I mentioned how "most" of us havn't been hitting the exercise trail too hard.  I would have to say your making up for a few of us in that department (You go Girl!!!).  I think that some exercise definitely helps the drugs work there way through the body along with a sh*t load of water.

    I don't think you have time for se's with all the positive things your doing for the mind and body.  My dh is always proposing to me to try to keep moving, sometimes he wins, but lately the recliner has had a bigger impact!

    LWDana, sounds like your doing quite well, great to hear that your up and about with minimal se's.  Keep it up!!!

    Carol

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  • sheshe48
    sheshe48 Member Posts: 338
    edited March 2008

    Hi My favorite jewels.

    I was not able to get my chemo treatment on the 3rd, my blood counts were good. They did not order my neulasta shot, and the dopey nurse that called me and said not to take my decadrons screwed me up and they refused to give me my chemo. They were afraid of me having a bad reaction. Today is March 5th and I was able to get it today. I did not have a bad reaction to taxotere. my face got flushed and and  I have gas pains and gas. That's about it. I was very happy not to have a bad reaction. I wanted to go on line and give out all my shout outs but yesterday I had a very bad headache and was not able to do that. I'm going to try to get up early tomorrow and do it before I sink into the fog. Thank you Carol, D1, KathyL, Sista2. and everyone that sent me good vibes and warm wishes. I just love the new cancer center, what a difference. Yeah the old cancer center called me and yelled at me because I was not going there for chemo and was not keeping my doc appt. I can't believe they never canceled my appts. when I called and said I was leaving for a new center and to cancel my appt. and I also picked up my records in person. They knew I was leaving. Good riddance to that nasty place. I did not take any pix today, I will take some on March 26th That's my last one, KathyL can you update it? I got pushed back 2 days. Thanks and I love your pix then and now. very pretty, I wish I could take a better picture. Your children are beautiful.

    Dana  I hope you are doing ok with your first treatment, love your pix too. Sheshe

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  • sheshe48
    sheshe48 Member Posts: 338
    edited March 2008

    Vettegal  Love your pix too, you look great in your t-shirt and hat.

    SheShe

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  • LilWarrior
    LilWarrior Member Posts: 268
    edited March 2008

    Sheshe - when are we getting a pretty picture of you - we cant wait, that goes to all the others ladies on here - can we have pictures.  Smile.

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