Jan 2008--Ain't it Great?

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

    Happy cocktail hour to our fellow sisters ... DianeB, Paula, and Theresa, here's to a stress free day with no complications.  I think ol' D1 should have taken care of enough drama for all of us this week.

    DianeB, special thoughts to you that you have a better round 2.  As much as a hospital bed doesn't sound quite as cozy as our own, I would feel better myself knowing I'll be where I can get proper care.

    Hang in there lady friend.

    To those having other txts today (pills, shots etc), lets all kick some cancer pa-tu-tee today and not let those nasty se's get us down. 

    Ordering T's this afternoon, will check in one more time later today to see if we have missed anyone.

    Off to the pharmacy (for a pooper pill Miralax), and then to work. 

    Lets have a great Friday, Carol

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  • KathyL
    KathyL Member Posts: 534
    edited January 2008

    Good morning Jewels!  You girls rock and are just the pick-me-up I needed.  Not feeling bad, just needed to laugh and smile and you guys did it.

    So my shout outs...

    D1: as everyone said, you DO rule!  I am so happy to "know" you!  Your posting and pictures about your hair just make this all seem better and doable.  You look wonderful!  So sorry to hear about your bad marathon day at chemo-- from the grouchy doc to the taxotere reaction.  What'll they do for your next taxotere infusions?? Just curious.  I'm doing the same drug and also had no problems the first time.  So a little nervous about number 2 now.  My friend here in DE did Taxol and had a bad reaction with hives and coughing on her second Taxol infusion-- they decided to stop it and aren't giving her anymore now-- she's done with chemo.  She ended up getting 4 rounds of AC then 2 of 4 of her Taxol rounds.  She's on to rads next.  Anyway, I hope your next one goes better so you and your poor dh don't have that scare again. 

    D1, SIS KImberly, and Carol:  my poop partners!  Thanks for all your comments and suggestions.  They make me smile.  The Colace alone seems to be faring better for me-- less stomach cramps.  But lots of gas-- just about killed the dh last night with some of the "clouds" I produced!  Hahaha!  My onc's nurse asked if I had hemorrhoids and I said who doesn't after birthing 2 kids-- I've never been diagnosed, but I'm sure they exist.  Anyway, today is one small step forward at least, so thanks girls.

    CarolC: insurance cos are sure one big FUSE, huh?  I can't believe what a mess they made for you.  I have had to fight mine here and there over little things so far, but your story just takes the cake. I hope things get better for you.  Maybe some day when D1 is president, she can clear that stuff up for us :)

    Well, just briefly on me to end this post:  today is OK so far.  Mouth tastes funny, no real appetite (but I'm eating anyway), just feel kinda blah with no real energy, and I have hot and cold flashes going on.  But I'm hanging in there and making myself get up, go through the motions.  I think I'll just lay low.  I'll check in on everybody again later. 

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited January 2008

    Good Morning Jewels,



    Hey Carol- Hang in there with the constipation thing...I think the trick, I believe it was suggested earlier...is to start the constipation prevention program the same day you begin premeds before infusion and then take them for the week so the process doesn't even have a chance to start. No alcohol recommended for me as well...but recommended sounds like a suggestions...but I haven't had a drink for 10 days as of last night...I sound like I'm at an AA meeting :-0 Anyway, haven't really craved a drink, but will want to raise a glass next Wed. when we finally get to celebrate my older sister's bday belatedly due to her hectic work schedule. I'm going for a drink I'm not really attached to like a martini of some kind...I just can't take the chance of ruining my taste for wine. I'm drinking what should be coffee this morning...but it doesn't even taste good, so I probably won't even finish it. Sigh!!!!



    CarolC- Man, gotta love how the one hand doesn't know what the other one is doing!!!! I hadn't thought about insurance hassels as an SE...good way of looking at it. FUSE!!!!!!!



    D1 and Vettegal- I just saw the previews for the Dexter show...I think that's what it's called...with the gay brother from Six Feet Under? I loved Six Feet Under. It looks like one I'm going to like. I'm hooked on the Law and Order, CSI, NCIS, Cold Case etc... kinds of shows...have been since I was a kid watching Quincy. My husband tires of them, so I have to DVR them and watch when he isn't around. I also really like Medium, Ghost Whisperer, and Moonlight( is that the name? about the vampire).



    Good luck DianaB...sending positive vibes your way!!!!



    Big ((((HUGS)))) to all of you who underwent chemo this week, who are experiencing SE's, hasseling with insurance companies or getting the tx down. Have a great weekend!

    Hey, Kathy and Carol, you must have been posting at the same time I was...glad to here from you both...I got the Miralax too...it's ready for the next go round. Kathy, I think the Taxol needs to just start slow...that's what my nurses did the first time...they did it really slow for 20 minutes then speeded it up...it took over an hour and a 1/2 for that puppy. I'm going to make sure they do the same thing this next time.

    SIS Kimberly

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

    D1, my hair started coming out at T1 + 15 days (last Friday). It's been fairly steady. Last weekend I cut it all very short (1/4 - 1/2 inch). I haven't shaved it, I just thin it out manually every 1/2 hour or so while at home. There is still a fair amount there, but there are bald patches. Look more like a burn victim than a cancer patient at this point.

    This week at work I've worn 2 of the fleece caps my partner got me for Xmas, and today I'm sporting what I was hoping would look like a pirate's scarf (but probably looks more like a do-rag). I keep hoping someone will guess "pirate" so I can say "arrrgggghhh." I really want to say "arrrgggghhhh" today.

    Wink

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  • DianeB
    DianeB Member Posts: 78
    edited January 2008

    I type this right before going to the hospital. They now want an ultrasound of my port area because I have been having some pain in that area and they want to make sure there is no clot. At 12:30 I get my 2nd infusion, so I will be at the hospital from 9:30 until the release me on Sunday. Wahoo! I will keep all of you in my thoughts as well. It is so nice to have other ladies going through this at the same time as me.

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  • Determined1
    Determined1 Member Posts: 806
    edited January 2008

    Hey Gang,

    Good luck DianeB--rest up and take advantage of your stay.  You'll be in our thoughts.

    I can't believe all the poop talk here!  Sounds like my dinner table!  (Okay, now you REALLY know too much about me!)  Yes, KathyL, the Colace is a real gas producer.  My family loves me.  It doesn't matter anymore around here who "dealt" it, when they smell it, they all point at me!  Embarassed

    Saw my surgeon today to have him check that new lump.  At first, he thought maybe an undissolved stitch, but he looked at it on the sonogram, just in case.  He didn't like that image, so I got a new needle biopsy (I'm still a little light-headed from it--I'm REALLY not wild about those.).  Results should be back end of next week.  Sigh.

    Good news is he gave me a script for physical therapy (my silver lining).  I start on Tuesday.  I'm hoping it will help with the spasms--I'm also going to see if they can help me with the mobility on my SNB arm--why not ask?

    Feeling a little queasy this time.  Wonder if it's cause I had the Benedryl and Ativan added in this time?  Have already eaten 3 times today--woohoo!

    Speaking of eating, a friend should be here momentarily to take me to lunch, pick up my new specs (hope they got the rx right this time!), and then to be my support while I get my f*cking neulasta shot.  A good friend.

    So must go so I have time to Biotene my mouth to try to keep the sores away!

    FUSE (and yeah, that includes the ins. cos.--buttheads)

    D1

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  • Jenn51
    Jenn51 Member Posts: 94
    edited January 2008

    Hello Dear Ones,

    This will be short because I'm shaking so bad I can hardly type. 

    Well my onc changed my chemotini all around.  Now I'm getting Taxotere,Charbopartin & Herceptin every 3 wks for 6 tx.  During this I will get the Herceptin every week.

    Yesterday was long, 7 hrs.  But really no reaction.  I got the cold spray & only felt the nurse pushing on the port to tighten the skin.  No prick at all! Cool  We are going to see what my counts are next week before I get Neulasta.  I'm also taking Decadon & have Compazine if I need it. 

    Last night after we got home I started a little light-headed but now at 24+ hrs after start of tx no nausea.  A little achy, really tired, a bit of a headache & still lite-headed & shaky but that's it.  Anyone else have the shakes?

    DI you Rock Girl!  I love the pix!  I took a camera yesterday but forgot to have rn take me & DH & bags of glory.

    Everyone, i'm thinking of you but have to go back to recliner.

    hugs to all.

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  • camazur
    camazur Member Posts: 70
    edited January 2008

    Yes about the stress from insurance companies. Just what you don't need added to all the built in ones. My insurance has a lifetime cap that is awfully low, and though I haven't used up much, considering, it may not get me thru radiation. And Bush made it so you can't claim bankruptcy for medical bills any more.



    One thing you all might not be aware of is that cancer LOVES sugar and grows quickly when it gets it. (Sorry, but that's ALL sugar--honey and fruit included.) I am pretty addicted to sugar, I must admit, but am trying to cut down in light of this info. As with any addiction, its the first few weeks that are the hardest. Chocolate in particular will be hard to give up entirely. I mean, life has to have some indulgences, and I've found myself indulging because life is too short (as we all are now acquainted).



    D1--Speaking of indulgences, the medical marijuana issue was one I'd have brought up to my onc if my meds weren't handling my nausea, but they seem to be so far, and I was given 3 just to take at home. I don't think a toke would hurt to spark your appetite once in a while, though. And it is nice to have teens in the house at this time.



    I've heard to avoid excessive vitamin regimens while on chemo to avoid interference, but a multi with Vit. D for your teeth might not be a bad idea. I've read some gals have dental problems during and after chemo. I've also been meaning to ask about calcium supplements...which sometimes have D.

    Meanwhile, my well-meaning father sent me a huge box of all-natural vitamins, etc. that I figure I'll use to build me up after chemo. Altho I don't think I'll ever choke down that cod-liver oil he sent. Lemon flavored, no less. My dh has been taking it, tho, so not all for naught. Don't know how he does it.



    Maz



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

    Jenn - I'm starting the same cocktail on Monday, so am hoping my SEs are as light as yours seem to be so far.  I'll let you know if I get the shakes. 

    D1 - Just got back from having a sleeve fitted for lymphedema since I'm in altitude tomorrow and next weekend.  The physical therapist gave me lots of exercise and arm massage information, so I think it's worth the trip.  If the PT can help with your back spasms, all the better.  The clinic the surgeon sent me to offers regular massages for $35.  Lots cheaper than the local spas and probably more targeted, so you might want to see if they have something like that to help.

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited January 2008

    Good afternoon all,

    LJ13 I hope your coworkers play along with the pirate thing today...saying aarrrgh would crack them up.



    DianeB- Thanks for checking in with us...good luck to you.



    D1- Glad you got that lump checked out...let's all just thing BENIGN...



    Jenn51- The shakes...do you have a fever? Or are you dehydrated. Drink lots of liquids and eat protein when you can. Feel better sweetie.



    Maz- You know, if we paid attention to all those things we read and hear...often contradictory...we'd starve. You've got to do what you feel is best for you, for sure. Cutting down sugar is always a good choice-cancer or not. I choose to eliminate processed foods and go for the whole foods, whole grains, and organic meats, fruits, and vegies. I am not a real sweets person, but I do indulge in dark chocolate pieces every now and again.



    OK, so I was awakened at 4am this morning, forced out of my nice warm bed to write down the words in my head, and then I spend the last hour giving this poem its voice. Man, these poems can be demanding.



    Lighten Up 1/18/08



    Lighten up on life

    because there is no

    race to run.

    First place is not

    something you want to claim.

    Those things you are collecting,

    what a waste,

    will amount to nothing worthwhile,

    I guarantee,

    got no value

    like those dreams you never chased.



    All those hearts

    you’re passing by without a thought,

    afraid they will distract you

    from your goal,

    are the gems of your journey

    slipping away

    because getting ahead is

    all you can see.

    “Pushing hard,

    can’t look up,

    no time today.”



    It’s a trap,

    can’t you see it there

    ready to swallow?

    It doesn’t care if you

    Are at your most productive

    You’re fair game

    as long as you choose

    to run the race.

    The myth has been woven

    into your ‘should do’ script.

    You didn’t read between the lines;

    there are alternatives in place.



    There is still time,

    my friend,

    to make a change,

    if you will just stop

    long enough to hear.

    You can slow down,

    just take a deep breath in,

    and pay no mind

    to those who gain the lead

    because in the end,

    there is no big prize to win.



    Step off the racetrack

    you call your life

    and look up

    instead of at your feet.

    Take notice

    of what the world has

    to offer to you.

    See the faces

    of those who want

    only your time

    because its how you

    live and love that counts,

    not the job you do.



    Lighten up on life

    because there is no

    race to run.

    First place is not

    something you want to claim.

    Those things you are collecting,

    what a waste,

    will amount to nothing worthwhile,

    I guarantee,

    got no value

    like those dreams you never chased.





    SIS Kimberly

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  • vettegal
    vettegal Member Posts: 287
    edited January 2008
    sis kimberly-how truthful words can be..i gotta some how print it at work and hang it up somewhere on my desk.Cool
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  • KathyL
    KathyL Member Posts: 534
    edited January 2008

    Good afternoon Jewels!  We've been chatty today. 

    SIS Kimberly, another good poem, girl!  You remind me of one of the Heroes characters that's just taken over by their power-- the words just come to you. 

    Golfer: can't believe you're off to work today.  I feel like such a wuss not working at all during this whole time of chemo, but for me it works best. 

    Diane B. :  We're all sending you good thoughts this weekend.  Check back in with us next week. 

    LJ13:  you made me think of a question when you talked about hair length... Is it better to shave it all down to nothing or leave a little bit there?  I can't decide which to do when my time comes...  somebody told me to leave about 1/4-1/2 inch like you did, that it's not as bothersome that way.

    D1:  Go for it with PT-- you should be able to get both things taken care of there.  Good luck with your biopsy results, too.  Sending nothing but good thoughts for you as you wait (ugh, that word!).

    Jenn51:  Hang in there Jewel!  Hope the shakes get better-- maybe it's from the decadron, I know it can do that and give ya quite a "buzz".  And what a pain to be changing treatments now.  Hope you do well with the new regimen.  Will you do Herceptin weekly after the chemo's done or back off to every 3 weeks?  I'm doing the every 3 weeks through the whole thing.

    Maz:  speaking of "buzz", funny you brought up the MJ thing too as I was thinking about it.  The anesthesiologist I saw this week when I got my port asked if I was doing it, or had considered it.  Apparently it's pretty "normal" to request it for nausea if you're a cancer patient.  I joked with him I could just go to the local university and get a stash if need be-- hahaha!  The whole thing is funny to me b/c my whole life I've been such a "good girl", no drugs, barely any drinking... and here I am still with cancer despite my "wholesome" nature of treating my body.  Oh well!  Life sure is a crapshoot, huh?

    Catch y'all later.  I actually got in a mile walk on the treadmill earlier (which is good for my lazy butt).  Gonna go rest now.

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

    Actually all cells love sugar. It is quickly metabolized which provides fast energy.

    What specifically do you mean by sugar? Sucrose? Glucose? Fructose? I believe even complex carbohydrates, such as found in all vegetables, can be construed as "sugar" since they have the same basic molecular structure of Carbon, Hydrogen, and Oxygen.

    I think the "cancer loves sugar" notion got started as a result of someone oversimplifying the whole PET scan thing. You fast, then they give you radioactive glucose "because cancer loves glucose." Well, cancer cells love all nutrients, just as any normal cell would. They use glucose simply because it is metabolized quickly.

    Imagine how lucky we all would be if the prevention/cure for cancer were simply avoiding one type of food.

    Now, there are plenty of reasons to reduce sugar consumption, but as a cancer cure/preventive, I just don't believe it's that simple. 

    KathyL, I'm not so sure leaving the hair there is the best idea. I can tell you that since it started coming out, my scalp has felt sore particularly when I lay on it, wear a too-tight cap, or go against the grain. It might be better to go ahead and get it shaved. I just have a pathological avoidance of spending money on 1) things we buy just to throw away, like premium garbage bags, and 2) things no one will ever see, like my bald head  Laughing

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  • misvic
    misvic Member Posts: 1
    edited January 2008

    D1...Any news from your doctor on the potential new treatment? 

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

    KathyL, don't even think of yourself as being a "wuss".  Not one of us is that "in any way shape or form"!!!!! 

    If you've noticed I'm the only sister gal of the group doing CMF therapy.  Although its a 6 month txt vice 4 mo. it has been said to be pretty tolerable.  I had to question 2 oncs as to why I'm not getting what many others are, with very similar path reports.

    So far so good, 6 more days of oral cytoxan and then a 2 week holiday.   YEAH!!!!  1 week down and 23 to go, then rads, then tamoxifen, the fun never ends!!!!

    Anyway, you take care of yourself, that is priority number one.  If/when I need more time off from work I'll be able to take it.  Its a weird feeling to actually almost like the thought of going to work, it means I'm feeling pretty darn goodSmile.

    Carol

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

    Carol, I read the CMF is actually the standard protocol for bc treatment in Canada. Some studies have shown it to have improved outcomes over std. AC/T therapy.

    I was going to question my onco about it, but decided not to since I'm not on "standard" AC/T, but rather Dose Dense, which also has shown improved outcomes. I am coming to believe that at some point, you do have to simply defer to their judgment. They studied the field for years, they hopefully read the latest studies, etc.

    There are so many variables in types of cancer, treatment protocols, etc.  

    Just my $.02. 

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  • sheshe48
    sheshe48 Member Posts: 338
    edited January 2008

    Hi JJ,

    I hope everyone is doing ok with their se's this week. My head is also sore and my hair is falling out so bad, I just want to also shave my head this weekend, my hair right now is very thin. I'm wearing a Tenn. Vols do rag today.

    D1  Sorry you have to go thru all that, it's like it's never going to be over. That's how I feel sometimes. Let us know when your path report comes back.

    Camazur  I'm taking the vitamen D and it's helping, my oncol said I could take a multivitamen, it depends on my stomach if I take the vitamen.

    DianeB  Good luck on your visit, I hope you don't have a blood clot. Good luck with your treatment.

    Kimberly  you are so talented, good poam. Glad you got your wig.

    I know I can't give up sugar, anyone else? You ladies crack me up, this is a great site.

    Hugs to all, Sherry

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  • wvgirl
    wvgirl Member Posts: 196
    edited January 2008

    D1  My morning was a little overwhelming. Morning shower I had a rats nest in drain. While drying my hair more came out By this time its getting pretty thin. My friend at work said she could not tell This is day 14 of 1st treatment. My hair dresser is off for a while But I was able to get an appointment with my mothers Tomorrow Will be my shaving day and I will join the balditude club.Wink

    Good luck with your path report.

    Maz  About your teeth I called my dentist. They told me we on chemo need Fluoride Treatments Weekly. They were kind enough to sell me a bottle of it along with the teeth trays used.

    Kimberly- WOW another Great One from you.

    Hugs to all

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  • PAlady
    PAlady Member Posts: 176
    edited January 2008

    wvgirl - I am right behind you. Mine is starting to come out in multiple strands today. I'm guessing clumps will be a day or two behind?

    Kimberly - Thank you for the kind words. Intellectually I know it will be fine - emotionally don't believe it at times. Doing much better now. I think it is just the anticipation.

    D1 - Hate to hear about your ordeal with your second round - but glad it worked out. Thank you for posting the pictures! They were great and made it look not so bad!

    Vettegal - I had Marguerite Bonaventura. She was my second opinion and I loved her! I did meet a lady down there who used Johnson was very happy with him, and I really liked him from the CD in the binder they gave us. Seems like he has a great bedside manner.

    I hope everyone is doing well and can try to enjoy the weekend.

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  • vettegal
    vettegal Member Posts: 287
    edited January 2008

    palady-She is a part of the same surgical group, they are a great group and the nurses are so nice.

    D1-you have inspired me to shave my hair after my first treatment next friday. i had my hubby buy some clippers and that weekend i will get buzzed(literally) I rather have the buzz hair fall out then the big chunks..ok that sounds gross!!

    ok, funny story....I told my hubby that i would need hedge clippers to cut my hair..it is soooo thick. I go to walmarts website to look for hair clippers. I do a search and type in hair clippers. the first 10 items are beard trimmers item number 11 was a black and decker weed trimmer and i almost fell off of my chair!!!LaughingI am yelling at him...i told you i needed something then hair clippers!!Surprised

    that was my excitement for last night. He did go buy some clippers so he can give me a buzzcut!!

    Ladies-it is going to be real cold weekend here in pittsburgh and the east coast..so stay warm, snuggle to something..human or animal!! they're talking wind chills below zero and i am not leaving the house at all tomorrow...drink some wine..what ever your beverage of choice is....and remember FUBC (thanks d1) and we are the Jewels of this world and we are precious!!!!Wink

    hugs to everyone!!   xxooo

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  • PAlady
    PAlady Member Posts: 176
    edited January 2008

    Oh my gosh, vettegal, you had me laughing out loud with the weed trimmer story- Thanks!

    I just got up and we already have about an inch of snow with a snow advisory in effect till tonight or tomorrow. And yes I think our high is about 10 tomorrow - ugh!

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  • KathyL
    KathyL Member Posts: 534
    edited January 2008

    Good morning fellow jewels.  Today's a tough day for me.  Body aches and no energy are really setting in.  It's really not too bad except my kids are home and I really would've rather felt like this during the week when they are at preschool and there's not so much to do with them.  I'm gonna go rest and will check in later.

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  • CarolC
    CarolC Member Posts: 179
    edited January 2008

    Hi Jewels,

    Just reporting in from freezing Omaha, NE...-9 - looks like everyone is cold this weekend.

    I've not had any serious se's yet but I just feel kind of sluggish and feel like I constantly have to poo w/stomach cramps. I'm not exactly constipated but it's probably time for some Smooth Move tea. I'm also feeling down and depressed - probably part of it and some other challenges going on in my life. Still no word on whether the Xeloda will be approved by my insurance company's appeal board so I'm worried now whether Taxotere will be enough.

    Sorry to be so me. me. me. but just wanted to check in and let everyone know I'm thinking of you. Carol, when do we send checks for the tees? I can put mine in the mail anytime - I just need an address. you shouldn't have to front the money for all of them.

    Be well Sister Jewels.. and stay warm.

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

    Good Morning/Afternoon Jewels,

    Wow, I should quit my complaining about the weather here in Washington, when I see how cold it is where many of you are at.

    I placed our order for the T-shirts yesterday.  They should be ready for me to pick up on Feb 1st.  I have already "acquired" mailing envelopes and will have them ready to send.

    In lieu of PM'ing each of you, I figured I just put my address out there for the world to see.

    Carol Salo

    17851 9th Ave NE

    Poulsbo, WA 98370

    You can PM me your address (if you havn't already) or just include it with your payment.  I have been asked by many of you about shipping, the USPS estimate calculator comes to about $3.00/ea.

    The pricing so you don't have to scroll backwards through the post are as follows:  Small - XLarge $11.74  XXlarge $13.24  and XXXLarge $14.52

    DanaC - I did not have a size for you, I guessed and ordered a large.

    Also, I ordered two extra T's, one size Large and one size X-Large just in case anyone else came on board in the next few days.

    Hopefully, this is all you need, I think we'll have to post pics of each sporting the look in our T's!!!

    Be checking in later today, daughter stopping in from college today.

    Carol

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  • wvgirl
    wvgirl Member Posts: 196
    edited January 2008

    Good Afternoon Jewels,

                            Today My daughters went with me to get my shave.

    When I arrived at the hair dressers my dear brother was there waiting for me. He had his head shaved  gave me a hug after I was done and told me I look good. The hair dresser did'd even charge me  I wish I would have taken my camera.

    Correction on the fluoride treatments. I said earlier the treatments need to be weekly it is to be  Daily Laughing

    Carol  thank you for all the work you have done on the shirts. I will be sending mine out in the mail Monday.

    Its getting cold here also high tomorrow to be around 16 low around 9 I bet it will be a busy day at work Monday with a lot of no water calls...Cry Could be worse at least its warmer than Carol--stay warm

    Will check back in later...

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  • DianeB
    DianeB Member Posts: 78
    edited January 2008

    Hello Everyone:

    Well, after the seizures on the cytoxan I had a reaction to the taxatere. Kind of like a reaction to an allergic reaction to a bee stink. So then I was sent to ER, now my regimen is changed to CMF. Can you believe it? I am just overwhelmed. I am hoping that things start going right for a change. In addition to that, they found a blood clot in my left arm. I've had it.

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  • SISKimberly
    SISKimberly Member Posts: 762
    edited January 2008

    Good morning almost afternoon Jewels,



    Thanks Vettegal, I'm honored that you want to post my poem at work.



    And Kathy, I love that show Heroes....too bad poetry can't save the world, but it can sooth the spirit, make one laugh or think about something in a different way. :-) I agree with Carol, you aren't a wuss at all. Everyone has different circumstances they have to deal with, and being around sick kids is not the best choice for you...nor me...I'm off for the duration, too. Sorry you aren't doing well today. Hope the hubby can keep the kids occupied so you can rest. (((HUGS))))



    LJ13- You are a fountain of knowledge, girl! Great info on sugar and Carol's CMF tx.



    SheShe-Bummer about your head being so sore...no wonder you hair wants to leap out...it's uncomfortable. :-) Good luck on the shave. I'm not far behind. And thanks for the compliment on my poem.



    wvgirl- WhooHoo on your baldascousness and joining the very prestigious Balditude Club. How sweet of your bro to show up and show his support by shaving his head!!!! And, how nice was the hairdresser not to charge you? I'll bet when it started falling out in clumps, you dh didn't ask are you sure again. :-)

    Thanks for the kudos on my poem and for the info on the flouride. Guess I will have to call my dentist. I also need to get a good Calcium Vit D supplement.



    PALady- I totally get the whole head getting it and heart being on the fence thing. Being anxious is totally allowed. Glad you're feeling better...today.



    Vettegal- Hysterical about the clippers. I was cracking up reading it. And you are so right about all of us Jewels being precious!!! Yes, we are!



    CarolC- No apology needed. Sometimes it has to be 'all about me', and you've been through a huge life changing event here. Having the added stress of not knowing if you'll get the treatment you need is bound to send one over the edge. We're here for you, and I'll bet after the insurance company gets your doctors rationale for choosing the drug he did, they'll approve it.



    Carol- Thank you so much for getting the tshirts taken care of....you are the WOMAN!!!!! Love your new picture. Can you play? No way I can swing a club yet. I just started last summer, but enjoy it so much.



    OK, so I'm off to fold laundry and get something to eat. I won't tell you I hate the weather here today. It's not too bad temp wise here(upper 50s). I really do feel for you who are experiencing freezing temps....stay warm.


    Oh, Diana, you were posting at the same time I was. OMG, you poor thing. Hopefully, the new treatment will be easier on your system. I can't even imagine what you've been through...I am so sorry.
    ((((BIG HUGS))))))



    SIS Kimberly







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

    DianeB, so sorry to hear that your having a tough time again with your txt.   Its probably really hard for you to be feeling like this is actually supposed to be "good" for you.

    I can tell you that the regimen of CMF I am on is quite tolerable to this point.  You did say that last time you had a reaction from the cytoxan, do they think that if you do cytoxan orally it may not have the se's.  I guess they do CMF with oral cytoxan or iv.  I am doing the oral for 14 days with a infusion of "MF" on day 1 and 8 of that.  The actually time for my drip is less than an hour. 

    Diane, if you start that regimen as well I'd be happy to share what's been working for me.  There is also a thread of fellow CMF'ers with a bunch of support for us.

    I'm assuming your still at the hospital, hoping your feeling better at this time, you hang in there gal, it will get better and we will all get through this together.

    Carol

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  • KathyL
    KathyL Member Posts: 534
    edited January 2008

    Hi girls!  OMG Diane I feel so bad for you and am sending big hugs your way.  I can't believe you posted you crazy lady!  Major chutzpah (sp?) and I gotta say, the next treatment has GOT to go well for you.  Hang in there.

    Posts on calcium and fluoride (I'll put in what I have researched, asked, know as an NP): for calcium all us ladies should get about 1000mg a day-- through food is best, but any vitamin will do also.  Don't take it all at once since we only can absorb so much in one sitting and the rest will be peed out and wasted.  I personally like Viactiv, but I've been taking One-A-Day Women's vits. while doing chemo for the other nutrients it has.  Most calcium supps. contain Vit. D.  For fluoride... yes, it's daily.  In the form of fluoridated toothpaste (like little kids'), mouthwashes (ACT is a good brand), or gels (Colgate makes one called Gel-Kam that I got at my pharmacy).  Just choose one form of fluoride b/c too much is not good either.  And don't swallow it.  It should be used, swished, applied-- and left on for about a half hour to a hour before anything else goes in your mouth-- I do mine before bed and just go to sleep.

    Carol: I'm so psyched about the shirts!  I'll be mailing out a check to you early next week.  You're the greatest for taking on that endeavor.  It really means a lot and I know it's something we'll all cherish.  I can't wait to show mine off at my next infusion.

    Well, I'm gonna go try and walk.  I'm still trying to move today, it's just slow going.  I also gotta find that tea you all keep talking about (Slow Move)!!!  Everything is slow still (if ya know what I mean) and I don't want to be birthing more cinder blocks this weekend!  Thanks to everyone here for keeping me going.. just reading posts helps :)

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  • Determined1
    Determined1 Member Posts: 806
    edited January 2008

    Hey JJs!  Been a long day--I think KathyL and I are having a similar experience today.

    DianeB--I'm SO sorry this is happening to you.  I sure hope your team gets it right for you so you can just move on.  Geez, chemo is stressful enough!

    SIS Kimberly--you so totally rock, I'm outta my head!  Thanks for the occasional verse, they really make me smile.

    Sounds like the balditude club is growing!  You cracked me up with your story, Vettegal!  Be sure to wear a cap to bed--it's COLD!

    Carol--You are one stud of a jewel.  Thanks ever so much for so capably handling the shirt order.  I'll try to get my sh*t in one sock by Monday to post a check to you.

    My sister was flying through DC today on her way to London (I'm so jealous) for a business meeting and scheduled a long delay in so she could visit me.  She had Hodgkin's Lymphoma 2 years ago, so she's been through the chemo thing.  She brought me some WAY cool hats (which I have to try to shrink to fit my peahead) and some great lovin'.  It was nice to see her.

    But now I'm so wiped out, all I want to do is grab the remote and watch some Tivo'd stuff.  The dh is out of town for a firm retreat and my girls are at the movies together, so it's just me and my dog.  Time to chill.

    I'll try to be more focused tomorrow, but I'm not promising anything!

    D1

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