Starting Chemo in June 2005

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  • JoMac
    JoMac Member Posts: 192
    edited July 2005
    Nancy you sound like you stayed very level headed through the street fair experience.
    I have deciced to lower my expectations . I won't even think about trying to walk until this fatigue passes.
    I do wonder if anyone can help me with the watery eye and runny nose thing.
    It is the watery eyes that are most disturbing. I can't paint and not be able to see at the same time.
    I am drinking tons of water and using eyedrops.
    Is there anything you can think of I could be trying?
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005
    OK, here's the updated data on the Junies and our treatment dates. You ladies need to correct any mistakes. I've got this scrap of paper where I try to keep everyone straight. There are several ladies who checked in and then vanished, but here is what I have:

    Dana 6/8,6/22
    magand matts mom (Jill ) ??????
    JoMac 6/1, 6/15, 6/29
    Liz 6/23
    Bev she's doing a weekly trial, but hasn't checked in for a while
    Randi 6/8, ??????
    Beta 6/1 ??????
    KimB 6/2, 6/16, 6/30
    Watson 6/23
    Laurajoy 6/14, ???
    Saleboat 6/17
    bmck (Cathi) 6/3, ?????
    Zeamer3 6/24
    Rene 6/16
    Raro (Rebecca) ???????
    Sungem77 (Sally) 6/14, ??
    ToniL 6/2 ????
    Michelle 6/21 (she's on 3 weeks schedule)
    Scout 6/22, 7/14(/) 3 week schedule?
    RebeccaH 6/28

    Did I miss anyone? Let me know. It's just so hard to remember everyone, especially when we don't have a face to go with the name.

    I had a great fourth, babysat the 3 year old grandson all day, then cooked out with two of my sons and their families, then went to fireworks. I'm pooped today, though, and sore and achy. I feel like somebody's grandmother!! (Oh, wait, I AM somebody's grandmother...)

    I actually forgot about BC last night and commented to DH, "I'll be 87 and you'll still have to take me to see the fireworks!" He replied, "Yeah, you keep thinking about being 87."

    Brenda
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  • Scout
    Scout Member Posts: 76
    edited July 2005
    We went to watch the parade at a friends house at 12 and it was nice, although a little hot. We came home around 2 and I layed around the house until 6:39 and we went to our friends house, down the street, for a very nice dinner. It was nice but very tiring.
    I have to call the dr today because I noticed a white spot on my ankle and now I hve red lines around it....does it ever end???????
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    Brenda and all
    I'm back just in time for treatment five. I think I got sucked under a rock down there under the sea. I had awful exhaustion down there. I was ready to toss this trial thing out the door. Couldn't imagine doing ten more weeks of this-but then I thought about all those women in the future and I thought how I AM tired but not sick to my stomach so I shall soldier on. I also have imagined this wonderful island with white sand and soothing breezes, there are wonderful caring people there that bring us fruit that we can actually eat-and they give us the dreaded shots(in my case daily)and other meds-for those with children they play with other children who understand and aren't afraid to be near us bald women -it is a great place! SIGH
    Anyway anyone else have chalk taste with their food? I have wet chalk, dry chalk, hot chalk, and chalk with a hint of bitter and sour chalk- I just smile wheh someone says" isn't this the greatest (whatever)! Yes blackberry chalk followed by crunchy chalk crust
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  • JoMac
    JoMac Member Posts: 192
    edited July 2005
    Bev,
    Would you like some chalk with your chalk?
    or
    On the menu we have your choice of chalk, chalk or chalk?
    Yummo! As Rachael Ray says on thirty minute meals (the food channel).
    I don't taste chalk but everything does taste benign .
    Then it is all followed by heartburn anyway so what is the difference.
    I am noticing I am feeling sarcastic.....this is probably a good sign.
    Breanda I don't know how you can keep track of us all.
    I have made mental pictures of everybody. They are probably completely wrong.
    But trust me....the pictures are flattering and we all have hair.
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    Quote:

    We went to watch the parade at a friends house at 12 and it was nice, although a little hot. We came home around 2 and I layed around the house until 6:39 and we went to our friends house, down the street, for a very nice dinner. It was nice but very tiring.
    I have to call the dr today because I noticed a white spot on my ankle and now I hve red lines around it....does it ever end???????



    Scout Honey- are you SURE you went to dinner at 6:39 and not 6:38??? I am thinking that you may have once worked for the Railroad? You crack me up!

    About your ankle- sounds like a TICK bite - get it checked and make sure there isn't any of the little bugger left in there. You may need some antibiotics. They give Zithromax here all the time for that. We have a lot of ticks!
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    Jomac,
    did you get my email the other night???
    You should try some sudafed or some other allergy/decongestion med. Remember I told you Junesters that chemo suddenly makes you allergic to things you never were allergic to before? Sounds to me like that is happening to you. Check with your doc though before trying anything.
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    That was some episode Nancy! Let people think what they want. I love the term "chemo-crash"!

    And Yes I am a Born Junester....it is strange though. I now think of my birthday as my day of diagnosis because those are the years that really count to me now- plus they are a lower number! God willing come September I will be 4.
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005

    Bev, you are a true hero. It is the brave women like you who have made our treatments more bearable, better tolerated and successful. I don't know the details of the study you are involved in but I am filled with gratitude and deep respect. Thank you for our future.

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  • danahollis
    danahollis Member Posts: 161
    edited July 2005
    Hi Junies...

    I forgot to mention that last week, around Tuesday/Wednesday... I noticed my tastebuds went away. Given my fragile emotional state last week that just made me more miserable!!! Nothing tasted right... I could only taste on the tip of my tongue... the back part seemed dead to taste but was very sensitive to heat/cold/spices. Well, by Friday... my tongue was mostly white with barely any of the pink showing. I looked it up on the internet and I think I had Thrush. I started using my Biotene mouthwash (which I should be using all the time!) and that helped. By Saturday night it seemed to be better and I am fine now. I'm going to mention it to my Onc tomorrow. I thought it was strange that it went away on it's own, but then it came to me. I think that my immunity is very low by days 6/7 and then starts to get back to normal by day 8 as I also begin to FEEL normal. I'm guessing my own immune system was able to fight off the bacteria on it's own. At least I hope that's the explanation.

    Just thought I'd share... if your tongue is splotchy and white... can't taste anything... have it checked out.

    Hugs!
    Dana
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Hey All,
    Glad to see most of you are doing so well!
    As for me, the hair is about to go. I come up with about 6 strands of hair in my hands if I run my fingers through my hair. I'm on day 13. I knew this was coming, but bummer anyhow. I think I'm more depressed that I'm an every three weeker and not dose dense. You guys are going to be done and I"ll be a lone little straggler.
    I plan on talking with onc next week before chemo #2 to see if I can switch over. We'll see.
    You guys have a good day. Sorry if I'm whiny.
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  • Scout
    Scout Member Posts: 76
    edited July 2005
    Watson, I am on day 13 for my first chemo and my hair is coming out just like yours! I can gently tug....not really even tug...and a bunch of hair comes out! When I was washing my hair, I felt hair all over my face (I have a pixie cut now) and I did a little tug on the hair "down there" and a chunk came out. I think I'm going to be ok with losing my hair, but I know I will grieve for it and probably cry a little.
    DD took me to Target today and their basball hats were $2.08 each! The had a ton of bluejean hats so I bought 5! LOL! I also bought 2 black and 1 red...never can have too many hats!
    I called the dr about my symptoms and she said that she is prescribing antibiotics for my cold and to drink lots of water...sigh.
    Oh, and the 6:39 was a typo...was supposed to be 6:30...lol! I found out today that I need reading glasses for the computer.....only needed them to look up a number in the phone book now.....another bummer!
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  • JoMac
    JoMac Member Posts: 192
    edited July 2005
    Watson..... We will not leave you behind.
    Don't the marines have some kind of saying about this?
    Count on us. We will be there for you as long as it takes.
    Even if you whine.
    My father in law used to say (if he heard whining )
    "Whine pretty!"
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Thanks JoMac,
    You can be my sheep hearder. I'll keep bleating and bleating until I"m with the rest of the flock.

    Scout,
    I've got a few caps, but it's hard to find the ones without the hole in the back. I'm looking for maximum coverage! But I might go check out Target real quick tonite. As soon as it cools down! 101 degrees today. Can't wait to put a synthetic rug on my head.

    Thanks for the encouragement!
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Scout,
    Ohmygosh, I haven't even checked out the "downstairs" situation. The fun just never stops.
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  • LizFL
    LizFL Member Posts: 377
    edited July 2005
    Watson...can't help it...would you care for some cheese with that whine. I know it's an old one, but couldn't stop myself. We will never leave you behind. Many of us will be going on to a second round of chemo after the AC...so I don't think you'll ever be by yourself here.

    Found this link...could come in handy for battlespeak

    http://4mermarine.com/USMC/dictionary.htmldictionary[/url]

    I now have super, super short hair...feels comfy and cool. Had a good time with my hairdresser. Glad to have this over with!

    Liz
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Thanks Liz,
    And as a matter of fact, I would like some cheese, queso to be exact with a big basket of chips and a margarita. But I guess I'll settle for leftover potroast.
    Oh, and I have a date with Taxotere after my original a/c.
    Thanks!
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Oh,
    Did any of you go to the Look Good, Feel Better thing? I think some of you mentioned it here. I go tomorrow. Just in time I guess. Any suggestions?
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  • sandy_simpson
    sandy_simpson Member Posts: 17
    edited July 2005
    Hi Everyone!
    I have been through it all and want to encourage all of you to keep up the fight. Now it is all in your attitude. My motto: Life is more than hair, housework and boobs! The world wants us to blow those boobs up big and strut around but you know what, character is not found there! It is in the heart and the kind of person you are! You are beautiful because you are going through a fire. You will value life like you have never before. Precious will be your family, friends and the real things that matter in life. So do not get down because you have no hair or no breast. That is all exterior. Be proud because you know what real living is all about! I love you all and pray that you gain strength and a great attitude toward life. Turn to Jesus, He held me and never left me and gave me my smile! Sandy
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  • LizFL
    LizFL Member Posts: 377
    edited July 2005
    Watson...I went to the LGFB...it's fun! You don't have to do anything but show up. They show a little movie, give you some makeup to play with and you all get to put makeup on and have some fun. You get a whole box of stuff to take home...various cosmetics, moisturizers, etc. They even serve refreshments. The box comes with a booklet for makeup hints and other fun stuff.



    I will be doing taxotere after the A/C too. Can't wait to see what that's going to be like



    Liz
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  • kimBe
    kimBe Member Posts: 101
    edited July 2005
    Hi guys....I am on AC x6 and then paclitaxel weekly x12, so don't feel like you will be left behind...besides-I would probably play solitaire if I didn't have this web site to visit everyday! And you are much more fun. Regarding the hair loss-I watched "The Weakest Link" one time and it was a celebrity thing, the guy with red hair-(maybe "CarrotTop"---just realized that my 16 year old daughter has reason to think I'm old) said something to the host in response to whether his hair was natural color-(something like) "The drapes match the carpet"....hadn't thought of that til the post today-but I still had to shave my legs last night! Things are going okay at the bottom of the sea---now, realize I live in Montana-but think I remember hearing that the "good" seafood basically are bottom fish--halibut, etc or was that a chemo dream? Better go. Savanna is sitting patiently next to me. Talk to you tomorrow.
    KimB
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  • Analemma
    Analemma Member Posts: 1,622
    edited July 2005
    Good morning, everyone. Just stopping by to check in. I'm going to IKEA with my DIL today, it's in Pittsburgh, so 2 hours each way. She's driving, so I should be ok to shop after resting in the car, I think. I was beat all day yesterday, and basically did nothing productive. I know I shouldn't worry about it, logically, I mean, but it's anathema to my upbringing. Especially since I quit my "real" job in March to work at home, I feel like I should be working on my craft every day. I just couldn't get myself into the studio yesterday. The extent of my activity was to walk around the house once and look at the flower beds, set up the sprinkler, and then throw the frisbee to the dog in the evening so she could get some exercise. My neighbor was leaving for Jazzercise at 6:30 and all I could do was wave to her and feel sorry for myself. (Boo,hoo, poor pitiful me.) Plus, I was feeling achy. Does chemo make you feel arthritic? I do have some arthritis, but yesterday, it was really bothering me.

    Brenda
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    Brenda,
    I don't think it is the meds-yet, I hear that is the taxol that makes joints hurt. My guess based on my mother(loong story) is it the exhaustion. The more it gets us the harder it is to move then muscles and joints hurt. I finally got a short walk in and was I sore-it was a very short walk as the five year came along too. I will try to get another in today w/o fivie. I do know from mom the more we give in the more painful the aches become, awful cycle-Good luck-hope you feel better
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  • rmmom
    rmmom Member Posts: 168
    edited July 2005
    Waston
    was just reading over things again-you will never be alone. You have me! Iam on this stuff for like forever. Only on week 5 of 15! I thought it was 14, almost cried when the doc and DH pointed out I was wrong. Everyone will be talking about new hair and wonderful energy and I will stuck back here in chemo land BOO HOO LOL LOL
    What would we do if we chemo took away all our humor!!!
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  • MichelleB39
    MichelleB39 Member Posts: 51
    edited July 2005
    Hi Junies! Looks like we are all having "hair days" or "no hair days". I am on day 16 and it is startng to come out pretty good. I am putting off shaving it until this weekend if I can - only because I am vein and working this week. I know once it is off I can stop worrying about stupid hair. I guess I should go wig shopping too. That just makes it seem more real. It is very freaky to wash your hair in the shower and look into your hands and see all the hair there. Tear. And if it has to come out, why can't it come off my legs first?

    Brenda- thanks for keeping up with everyones' schedules. I didn't see your name on there. I go on Monday for treatment #2. Just when I am feeling better, time for another "Whammo".

    Thanks for all of the encouragement and suggestions!
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  • danahollis
    danahollis Member Posts: 161
    edited July 2005
    Hi Junies... everyone seems to be doing ok, eh? (That's Minnesotan speak... )

    Aside from a few Poor me, boo hoo's... but we are SO VERY entitled to those moments!!!!

    I just got back from AC Chemo #3... only one more left! Then on to 4 Taxols if I can get through them. They aren't MANDATORY for me, but my Onc would like to see me get through a couple of them at least. At this point... I 'm thinking that as long as my fingernails don't turn black and lift as I have heard of something like that happening... I think I'll be ok. That's my biggest fear with the Taxol. My nurse said that she thought it happened a bit more with the Taxotere... but I just don't know for sure. The thought of fingernail issues is more of a deal breaker for me than neuropathy I think. It just gives me shivers to think of having my nails lift or something.... oh... I don't like that!!!! I so feel for the ladies that have had that happen. It brings tears to my eyes... it's just so unfair.

    Anyway, on the hair front... I still have none. Each day I wake up and I'm still BALD! I do have just a little stubble... but barely enough to see. I can feel it though! My advice is just shave it off when it starts to go... I waited several days and it just got thinner and more SICK looking and was just everywhere in my house. It made me ill to look at it... it was so pathetic. I had a very brief, but good, cry and then in a few days I was better. It took a little time to get used to seeing my slightly pointy bald head in the mirror... but now I'm pretty much over it. I wear a little hat all the time though if I don't have a wig on. I don't want to share my bald little head with anyone but my hubby. I am too embarrassed to be brave that way. Kudo's to you that are brave... I admire you! But then... you probably look better as bald person than I do... I have a slightly pointed head and it's quite a bit lighter than my face so I have tan lines too! Such is life, huh, Junies???

    Watson... we won't leave you alone... we'll all be here for you!!!!

    Have I rambled enough? LOL! Take care, ladies!!!

    HUGS!
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2005
    Brenda there is a condition known as chemo-induced arthritis. If you already have some it will be made worse by the chemo. Things will settle down after treatment but this is different from the joint pains that some people experience with Taxol/tere.

    Anti -inflammatories are not a good idea while your counts are so low so Tylenol is probably your best bet. That and keep moving. I find that my arthritis gets much worse when I am not active.
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  • JoMac
    JoMac Member Posts: 192
    edited July 2005
    Today was a better day. I could paint and walk a little bit.
    So I guess as Dana said earlier it is going to take at least a week to recover from the treatments now.
    Being able to do some things made the day go so much faster.
    My mother brought up a great meal.
    I hadn't realized how stuck in a rut my eating had become.
    It was nice to eat something different and to have it all made and cleaned up.
    so maybe tomorrow won't be so bad.
    One thing about the hair/no hair thing.....I just notice how my head is so hard now. It used to be soft and poofy.
    I wear a small cap all the time even when I sleep.
    I don't like seeing my white bald head.
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  • Scout
    Scout Member Posts: 76
    edited July 2005
    Well, yesterday my hair started to fall out...not even a tug needed for it to fall out. This morning I took a shower and there was hair all over my body...yuck! I dried my hair with a towel and had to put it straight in the washing machine and now I am bald on top! I look like those commercials for hair replacement treatments!
    DH is coming home with a shaver (we are borrowing it from my nephew who use to have a buzz) and we are gong to shave it off...all off! I think I will feel better and it won't itch.
    I cleaned the bedroom and bathroom today and made it without a problem. Fatigue has been horrible, but my cold is finally going away..don't know if it's the Zpac my dr prescribed, or not, but I feel better.
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  • Watson
    Watson Member Posts: 1,490
    edited July 2005
    Hello Junebugs!
    First off, thanks to all of your kind words about not letting me be left behind.
    The hair thing! I"m still thinning, but also trying to hold out until this weekend. I slept with a cap on last night just sure I would wake up to total baldness. Not the case.
    I went to the Look Good, Feel Better program today. They were sweet and I got gobs of free samples. Bless their hearts, the volunteers were in the late 60's to 70's age range. They had some 'tips' that were a little dated for my taste,(I'm 42) but their hearts were in the right place. They MADE me take a wig they thought looked precious. It looks like Kelly Osborne! I guess it will go well with my Sharon Osborne wig! I actually have a halloween witch wig that could pass for Ozzie, so I guess I've got most of the family!
    Okay, still jealous of you guys going for chemo this week. My 2nd is not until next week.
    Take care, ladies.
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