Starting Chemo, November 2013 Group

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    I'm up Paulette. I'm in the big chair beating the red devil lol. Last time to come in my veins the ol'devil. Good bye! New medication for next treatment. I'm doing ok. Finished my Christmas shopping then sailing home. Home sweet home! If all goes well I'm going to midnight mass

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    Paulette-

    Enjoyed reading all of your posts, you had a busy night ! 

    I am usually so 'high' on the Ativan they put in before the chemo, it's hard to pay attention or time the actual chemo meds...I'm going to put my husband on it this time and make sure they go slower as I Had severe headache last time. 

    I am concerned about my counts this time too, and not wanting the nuelasta as it gave me chest pain and palpitations and tachycardia...but also not wanting wbc below the 2 it was without it...what to do?

    I'm on antibiotics now from urinary urgency I was having over weekend and that's getting better...I have read somewhere that if you are on antibiotics during chemo...your blood counts won't go as low???  Could that be true??

    Hope you get some sleep since you were up all night!

    Hope you do well this treatment, mine is Thursday..


    Phebe-

    I HATE my port too, it is in weird spot, always in the way and I feel it constantly, when I stretch, move, get hugs...I HATE it and cannot wait for it to come out, however, it is better than the infected iv site and arm I got with the first infusion....so it is serving its purpose - just one more annoying part to this awful battle we are in...

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  • Bec65
    Bec65 Member Posts: 312
    edited March 2015

    ARGHHHHHH! I had a big post typed and it disappeared!

    Let's see what I remember....

    Paulette, you're the bomb!

    Hand/foot sydrome is different than Reynaud's. I get that too in cold weather, but this doesn't involve any numbness or tingling at all. It's more of a soreness that comes from your hands feeling really tight, kind of like feeling really swollen even though they may not be. Also, the creases of my fingers (especially on my right index and thumb since I'm right-handed) are super sore and practically molting. It's not pretty. The skin is also really red. It's supposed to go away...anytime now would be great!

    Phebe, good luck this morning!

    Audra, I'm in the BGC Thursday too..

    What's everyone else's approach to wine/alcohol? I know most of us don't feel like having any right now, but what are your plans after treatment?

    Good vibes, ladies!

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  • wallymama
    wallymama Member Posts: 146
    edited December 2013

    Paulette, So glad you feel so much better. It was good to read your posts. Although I could have done without the 90 degree remark. It's cold here today, and getting colder tonight. I haven't had any 'why me' moments. I understand that it just is. I have, however had a lot of  'what if' moments. Ad 'shoulda, couldas'. I really don't understand how I missed the damn thing until it was so freaking large. But I did, and now it's getting fixed.

    Bec, soooo sorry about not being able to do the dishes. I'm sure that hurts you terriblyWinking. I need to get the energy to clean my fish tank, but I just haven't been able to get to it. Poor fishes. It's not terrible yet, but it soon will be. And hubby is totally clueless when it comes to the fish or the swimming pool. I might as well be talking about building a nuclear reactor as those two things.

    Phebe, I'm sorry that the loss of your hair bothers you so much. There really isn't anything anyone can say to help with that. It will grow back though, and hopefully even prettier than before. The crying may not even have had anything to do with the hair though. I went out to get the newspaper Sunday and just stood on the porch in the cold bawling. Couldn't even get myself to come back in the house. It's Christmas, we had/ have cancer, we're sick, we're tired, we have no hair. We can cry ANYTIME we want to. Hope your trip to the chair goes easy today.

    Audra, I think I may finally be getting out of the fatigue phase (for the moment anyway). It's like from day 3 to day 6 I can't even move. I hope my MO is wrong about it getting worse each time. I really have to try to return to work after AC #3. I need to work 30 days so the new year's disability/sick/vacation days kick in. I do have a lot saved up, but it will go pretty fast with all this.

    Hope everyone has an enjoyable Christmas Eve.

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  • Palameda
    Palameda Member Posts: 259
    edited December 2013

    Phebe and Paulette, congratulations on getting yourself into the chair. I go Thursday. I know it's getting harder and harder to do this. I've slept through the last two days and I'm feeling better. I realized yesterday that I'm fighting a small cold. If I were healthy this virus is so mild I probably wouldn't even notice, but in my current state POW! 

    Paulette, I'd never pegged you as a philosopher, but your your positive musings are such a welcome addition.

    Although I buzzed my entire head, I still have a lot of hair in the back and on the top. The front and sides, not so much. We shall see what, #3 does to my stubble. If I hadn't shaved it I'd have one heck of a Mohawk!

    I absolutely hate my port. It periodically hurts quite a bit. Sunday night I tried a bit of my Emla cream: nothing. I had to go the norco route in order to get comfortable. I heard they leave it in for months after chemo is over. Ugh!!!

    On a positive note, my family has been lovely. With three adult sons and a very competitive (nice term for aggressive) husband, the testosterone level in our house can get out of control and fill the house with arguing instead of Christmas cheer. So far, all is going splendidly. That is the gift I most want for Christmas: a happy family! The hardest thing about the holidays is managing expectations. I think none of us have the family, either extended or nuclear that we would wish for. As Paulette said, from the outside some look as though their world is perfect, but if you knew the secrets, you would understand that things aren't quite so smooth. We don't have extended family, but we've made out own. We have close Jewish friends whose "Christmas" tradition is Christmas Eve dinner at our house. We have a second cousin and his family who celebrate the day after Christmas with us. I am grateful for the family we have created.

    A shout out to those of you who may not celebrate this holiday. Please don't feel your contribution at this time would not be appreciated. There is probably a LOT of chatter here about the holiday, but that's because we are women and the pressure to create the perfect Christmas falls on us. And here we are ranging from the very impaired like Gayle, to those who are strongly soldiering through by holding down jobs and caring for small children and keeping their anxieties and SE at bay. Perhaps the take-away for all of us from this holiday will be to lighten up and learn to let go of the small things and be kinder to ourselves next year. And yes, there will be a next year, and many more to come. Merry Christmas, joyous solstice to all.

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  • BigT16
    BigT16 Member Posts: 100
    edited December 2013

    Hi Ladies-

    It's been a tough couple of days on the couch for me.  I'm visiting my parents in Massachusetts.  At least I have my 1 1/2 yr old nephew to entertain me. 

    Off to my sister-in-law's later for my Mother-in-law's 80th birthday party. I hope I have the energy for it all.  

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013

    I had to reschedule today's appointment with my MO due to weather related difficult driving conditions. So I'll see her next week instead. Many traffic lights are still not working because of power outages throughout the city due to the ice storm.  

    We saw that many stores and restaurants were full of people who were there just to keep warm. We are one of the lucky ones because we still have electrical power, internet, TV and phone services working. 

    Paulette: You seem to have a lot of energy! That's great! Keep going!

    I agree with the idea that we should avoid our minds to overpower us with the unnecessary why me's, what ifs, could haves and should haves that are not helping us, only pushing us into a downward spiral. Sometimes it can be a challenging task, however. Our minds seem to have lives on their own, so controlling them may be difficult. But, like everything, even this takes practice. So perhaps some meditation or prayer can help strengthen the mind. 

    I wish everyone here who celebrates Christmas and their families: 

    A peaceful and joyful Christmas full of in the NOW happy moments.

    I am including a picture that my son made  to cheer your spirits.

    image

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    Hey all...got about 4 hours sleep....now last dose of decadron...ARGGGG...and the neulasta shot. I havent hear that the antibiotics help to keep counts up. Ive been on them w/neulasta and still drop temp. but rebound faster! Personally Ive read alch in moderation is not a pmb. Its hard in the holiday season if you desire a bit or need to relax at night w/o adivan or something! Whats the diff anyway a pill or a glass?

    Sorry I wrote alot! I was soooooo bored and couldnt sleep! I actually have done alot of writing in the past. Not as much since Ive been sicker though. It felt good!

    The hand/foot thing....talked to my doc...sounds like thats what I have. Hands swell like sausauges, red, fingertips splitting open and OUCH! Feet real tender and puffy...plus I have nueropathy on top of it from other damage. 

    Bt sorry about the couch...hope it is at least comfotable...

    Am sorry about the delay.... Maybe its for the best...your holiday will be better hopfully!love the pic!

    Pheobe ...how it go!

    Audra...I dont get adivan...just benedryl..phenergan...and decadron...but it does make me sleepy.

    my port is getting less sensitive. I have a needle in it all the time for daily fluids...it is much better than a pic or other pbms!Hows the UTI stuff?

    Thanks wallymomma...with neulasta being delivered any moment Im surer tomorrow and the next few wont be great. Though we are getting IV toradol to give for pain this time.Like Bec...the dishes HURT! EVEN washing hands...any water!!! OUCH. Hoping for more strength for you!

    Audra...the hair issue gets better! I watched the video of my haircut...it was SOOOOO funny now!

    Love the pic Pat!I keep mine smooth and shiney! Love all the holiday shine/glitter  creams! perfect times! thanks about the comments!

    Ive had to learn over the years that take away is not so bad! Sometime even cheaper!

    Oh POO...litterally....I cant leave THAT in the litter box...GLOVE UP TIME! it smelllllllssssss! It wont wait for hubby! BAD KITTY!

    OH NO...NO WONDER! BAD TWO kitties! They both used their boxes. I have avoided scooping as much as possible...Now I gotta wash my hands.....OUCH! But hoping the smell lessons now! UGH>>>>>>

    SPecial huggs to all alone during this holiday season...of whatever faith! 

    My hubby keeps wanting to drive 2 1/2 hours one way to his moms house tomorrow. I keep telling him...WELL SEE....you know how neulasta it! and day three steroid drop! He's way to hopeful!

    Bec ....I have done that tooo....vanished!

    I got a few decorations up....I think Im pooped....unless I get another last serge from the last decadron mix.

    Nice to at least not be talking to myself all night! lol

    Huggs to alll! Happy Holidays!

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  • smrlvr
    smrlvr Member Posts: 422
    edited December 2013

    Merry Christmas and Happy holidays to all of you!  

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    I'm feeling worse than other times. I'm lying down nauseated and dizzy. They did a fast one on me. I'm glad I'm done with the old red devil. I was going to Christmas mass but changed my mind. My daughter is helping me with gift wrap

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  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    Merry Christmas to all those here who celebrate and Happy holidays to all. Thank you for coming into my life. You have made such a huge difference and given me hope for the future. xo

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    I did put the cream for two hours and that help

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013

    It looks like a lot of us will be getting chemo on Thursday! Wow. It will mark my 3rd AC.... I'm slowly working my way toward being DONE. I sincerely dread it this time; the first few days of feeling wired but unable to concentrate, the sleeping 2 or 3 hours at a time, followed by, if the pattern holds, a fever and some mouth sores, and then a few days of semi-normality before time to do it all again. Grr. But, where AC is concerned, at least, I do see the light at the end of the tunnel. Still, I kind of expect this 3rd one to kick my butt.

    Went ahead and had my onc meeting--well, with his NP, really--yesterday, and she says it's no surprise that I'm feeling blah and experiencing a lack of energy, since my hemoglobin is a bit on the low side.  All the WBC related stuff is actually *better* than it was pre-chemo though, go figure. Guess the Neulasta is really doing its job. 

    My period, which I bitched about so eloquently last week, turned out to be nothing more than a few days of light spotting, so I'm (once again) really hoping that I am done with that (forever!) as well. The onc's NP (who, herself, recently went through breast cancer,) thinks I'm probably done. So while I'm hoping she's right, I reckon that probably explains the weird place my head has been over the past week or so, as well....Not depressed exactly but definitely not cheerful. Self-absorbed, a little grumpy, prone to being teary for no real reason, and just not much in a mood to be sociable with anyone at all. "Mood swings." I probably should chat with my husband and let him know he should be prepared to ignore me if I turn into a dragon lady. :P  Poor guy.

    Husband will be going over to have Christmas with his family tomorrow. I had planned to go, but I think I'm gonna skip it: One of the family kids has some sort of virus that involves barfing and diarrhea and while I'm not THAT worried about it myself, my husband says (and he's right) that I get sick every time I go around certain members of his family anyway....lol and it's true, I do!  They are sweet people and I love 'em, but every time they're around (they live out of state) and I see them, I spend the next few days in bed....and this was true BEFORE the whole Cancer Saga began.  So I reckon I'll stay home and keep our dogs happy. Not sure how I'll feel about it; might be fine or might be all teary and boo-hoo-y about it. It could go either way. 

    re: The port.  I hate it. Mine doesn't really bother me much anymore, just a twinge here and there, but it's a foreign object stuck under my skin and I don't want it there. I'll have it out as soon as I can.

    re: alcohol :  If I decided I wanted a small drink, I'd probably have one, but I haven't really drank much in quite a long time -- no real reason, just stopped liking it as much, I guess, so the question hasn't come up.

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    Major advice for all!!!! I had my 3rd dose on monday...had them slow it WAY down...  Last dose got soooo sick cause the Nazi Nurse pushed EVERYTHING in less than 2 hours! Bad.... the first time they took their time.....no too bad....this third dose...much better! Had them do it about  1 15 min per dose....NO HEADACHES....NO PAIN YET...just bloating....no nausea....ALSO...have really super done the IV fluids plus drinking as I can. THe SE are SOOOOOO much less...had neulasta today so will know more tomorrow but off to a great start!

    The major trick is SLOW and easy...and FLUIDS! Get your doc to order home IV if you cant drink enough. FOr the mouth sores....get the diflucan and magic mouthwash! Major differerance!

    Have chemo brain so forgive the typos cause I am tired now....but will take that any time over the last dose where the NN hit me bad!

    Apparently the yeast is a major contributor to the mouth pbms! so the diflucan really helps! Systemic elimination of yeast!

    Also....I think it was Audra....if my brain is farting...forgive....the more I think about what you think was a SE of the neulasta...it may have been dehydration not the neulasta that caused the tachy, breathlessness, chestpain....makes more sense! Dont discount the neulasta! Get more fluids! 

    I am amazed the difference at this point. For the bloating and pain as the neulasta kicks in walk! it helps both. No pain yet on this side...have done double IV fluids and it has made the world of differance! Also...demanding they slow it all down really helped! The first dose they did slow....second kicked my butt cause the NN PUSHED it in and kicked me out! Bad move!

    Happy Holidays and Merry CHristmas to all my sisters! Best to you with your next BGC time! I will update how this round goes but so far...sooooo much better....just tired and chemo brain....but overall....WOW....

    I will read back to the newer posts later today. Too tired to do so tonite since did not sleep last night...as you already know! lol!!!

    Huggs to all!

    T're!!!!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    Not sure if I am gonna do the family thing yet with the 2 1/2 hr ride yet with hubby tomorrow.....Will let hubby know in the morning....If not...Oh well...Not gonna get guilted into going to anything! My health is more important!

    Got alittle bit more decorated...still not the tree....but enough to make me happy! Lights and a few pretties! Christmas is a SEASON....not a day! If I get my stuff up to my satifaction for a few days....thats all that counts! Who am I trying to impress! So much for perfection!....that ship already sailed! 

    lol!

    SMILE and DONT put pressure on yourself! No One will really notice or care! THey love you and would rather have you healthy than sick from killing yourself trying to make the perfect holiday!

    Best to all!

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    that's true Paulette our health is more important than impressing somebody. I didn't go out last night to our ritual Christmas service at 11 pm. I need to get better. I will drink lots of fluids today. I'm thankful I still have my tastebuds and eating good healthy foods. Have to wash veggies and fruit. I'm not retreading this. Just tired out right now. Getting a drink and going right back to bed. Sorry I don't respond to others my mind is in a fog. I know we will all make it.

    Gayle prayers going out to you for speedy recovery

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    oh shoot! They didn't slow mine down. I was done in 2 hours before it was 3 hous. I think the nurses just want to get out of their duty soon. But I am taking lots of fluids

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    forgive me for not responding to all of you. I understand we are all in a roller coaster ride. That cream I put on my port helped tremendously during chemo infusion I put it on two hours before I got the needle didn't even feel it but I smell the medicine as it went in. Have a Merry Christmas everyone!

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  • Bec65
    Bec65 Member Posts: 312
    edited December 2013

    Merry Christmas everyone, and I hope we all have a peaceful and joyous day!

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013

    Hope everyone is having a very nice and peaceful day, no matter whether you're celebrating a holiday, or not. 

    Gonna take a minute to (pun alert) get something off my chest.

    We did our Christmas celebration on Sunday, because my brother had to work today. My sister-in-law gave me a gift and hovered around as I was opening it cuz she just "couldn't wait to see if I liked it or not." I hate when people do that, but I opened it up and took out the gift which turned out to be a shirt, and I faked some delight and appreciation, all the while thinking "OMG."

    It's one of those breast cancer shirts, spattered with pink ribbons and the "fight like a girl" theme....black shirt with all peacock pink lettering, the thing probably glows in the dark....

    It's even got a graphic of a little pink bra on it....

    I've had a double-mastectomy, no reconstruction, and no plans for reconstruction, so I'm sitting there bald, flat as a 10 year old boy, pale from low RBC and chemo and everything else my body has been through, looking *older* than I am (when for my entire adult life I've easily looked 10 years younger than my real age,) and feeling the LEAST amount of "girly" that I've ever felt in my life... NOT really in the mood to wear an "I have breast cancer" advertisement like a badge of honor, ya know? lol....

    And there stands my sister in law RAVING "Isn't it just the CUTEST thing you've ever seen? I just KNEW you'd LOVE it!" 

    I would never hurt her feelings or be ungracious or ungrateful and I know she meant well, so I smiled and said thank you...

    But damn! WHAT are people thinking sometimes?!

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    I went for my half hour walk today. After my second day of infusion. I felt  no nausea or dizzy. My port is getting better. When I go for a walk I move it gently. My oncologist  said it was great to go for walks even if I start off slowly.  I hope all is well for everyone. I come and read every day. Just to see how everyone is doing

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  • Goldie8469
    Goldie8469 Member Posts: 90
    edited December 2013

    lisa137 - I agree.  I smile but i have an overload of PInk Cheerleader things. I made a feel the love box and my cards are in it. Every gift I get is pink. Trying to smile.  

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

     Oh Lisa awkward moment for you. That's incentive for her to buy you that kind of T-shirt. I would get a little annoyed. 

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  • Goldie8469
    Goldie8469 Member Posts: 90
    edited December 2013

    I need help with weight gain! I have been the same weight for years but I have packed on 8 new pounds and i am HUNGRY. HELP! 

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013

    @Phebe I hope I'm feeling good enough for a walk two days after my chemo (which is tomorrow.) I'm going to consider you my inspiration to get out and walk!

    @Goldie I  was lucky that it was the only pink cheerleader gift I got, I reckon...but I seriously just wanted to cringe lol. I feel better about it now though: I showed it to my husband and he just laughed and said "You can take it right to the Goodwill bin here in town; somebody somewhere will love it as much as sister-in-law did, and can use it."  And, he's right.  Still though, I feel a little bad when I don't appreciate something that was *obviously* chosen with care. (lol.)

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013

    I spent a restful Christmas day with my family. I didn't have to worry about cooking today since I did all that yesterday. It was snowing on and off all day, so we definitely had white Christmas. My son played with his new remote control truck, read his new book, listened to his new music and  had a lot of fun. We had a good time together.

    lisa: I am not surprised that you felt that the gift was not appropriate. I certainly wouldn't want to wear a shirt that would have bc written all over it. I feel that when I am in public I do want to blend in with the rest of the population so that I can feel somewhat normal. I wouldn't want the instant lable.

    Goldie: Welcome! What's your chemo schedule like? I wouldn't worry about the weight too much. You may need at this time a little extra to keep your body strong and able to fight off infections.

    Phebe:  It must feel good that you are moving along your chemo on schedule. 

    My port bothers me as well. I hate it. It always feels foreign and hurts me depending on the kind of movement I do. At times I feel that I want to rip it out of my arm to free myself from all that discomfort and pain. Lately it's been itching me to the point of driving me crazy! It's probably the tape.  

    Well, we all just have to hang in there!

    Have a Blessed Christmas!

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    Lisa: when I go for a walk, I walk slow and I use my ski poles. I move them back and forth gently to avoid hurting my port. I used to ski before I had BC. My oncologist said "it's great to go for a walk. It's a known  fact that patients who walk perk up faster. He said "you know how much our bodies can endure" I start off after my surgery on August 28 half a block and back, then around the block, 2, 3, 4 blocks. Eventually 1/2 hour walks. I have a friend who walks with me. We walk up and down ski trails -two lopes. I mean she skis while I walk but she didn't come with me since the cold winter spell. I  bundle up when its cold. and I have a good sleep when I go for walks. 

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013

    Oh, I've said it before, but I will say it again. I hate my port! I guess it does its job, but for one thing, they always have to recline me ALLLL the way back to get a flow through it, it's always slightly sore and gets little twinges of pain here and there when I'm not expecting it, and...mostly it just doesn't belong there. Honestly though, I guess it's better than getting stuck in the arm every time, it doesn't hurt at all when they access it for chemo or blood draws (even if they do have to almost stand me on my head for it,) and most of the time I forget it's there.

    I've heard that when they take it out they just use local anesthesia though, and I'm thinking "nope" to that. I am anticipating having my ovaries out, if not a full hysterectomy, in my not too far distant future, and I think I'll see if maybe they can just yank the port while they have me under for that. Seems like a good plan to me. :)

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  • Veronica37
    Veronica37 Member Posts: 71
    edited December 2013

    Goldie - I had not gained any weight until just recently, think its the holidays and lack of activity. I plan to get back into the gym next week and at least do cardio. Our bodies are changing so much and we may not be as active as we were before. I was very active before all this and now just slightly active, guess I need to bump it up,lol.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    HI all-

    I had busy last 2 days and feel exhausted.  Chemo #3 today...yayyyy or BARF!  Really seem to dread going now the whole last good week...and I have a UTI, or urgency, not sure but on antibiotics for it...doesn't seem much better after 3 days...

    I am having a dilemma about to nuelasta or not to nuelasta...as last time I had tachycardia and chest pain....but was it from that?  Hard to say as I took Claritin also and that was new...or was it just a new fun side effect of my chemo?

    Lots of questions when I go in at 0900...HATING to go get wiped out again...but knowing I have to....

    I have kept same weight but I sure seem flabbier and HATE that...I NEED to walk but my energy is like zero some days...walking through my house does it...

    Goldy- why AC?? Looks like your tumor same size/kind as mine??

    Happy day and praying for easy day in the BGC....wahhhh....feeling like a baby and don't want to go.............


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