January 2013 chemo group

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    ColleenKelly and all the new starters.  Good luck!  Many of us seem to have the experience that it was not as bad as expected.   Course we don't know what the future holds, but, as I like to remind myself, NO ONE DOES!   So as I keep telling all the people who ask me, "So far, so good"  

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Hi Everyone

    I've enjoyed reading the posts lately

    The pet scans being clear is great. My MO said I didn't need one so I'm happy with that, I think!

    I'm looking forward to a fish burger from McDonald's when I get out next :)

    I've been rocking my no hair, it's so hot here I can't help it, but when I go back to work next week I'll have to cover up I think, teenagers don't cope well with some things, but I'll see how I go.

    Day 3 of round two of AC and a digger turns up outside the window at 730 am to demolish the house next door.

    Last night I took sleeping pills and pooping juice. I did neither sleep nor poop last night. Digger went all day and has not finished, will be going on tomorrow too. Such bad timing really, but what can I do? I'll have to make sure I can sleep tonight.

    I hope you're all getting on with minimal side effects. I also wish it was cold and I could snuggle up inside my hoodie, you lucky ladies.

    Kia kaha

    Kk

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    kiwikid, do you have a full summer vacation as a school teacher in NZ?  In Los Angeles county there are some districts that have the traditional summer vacation and others that are full year schools with shorter breaks. 

    Sorry you have to put up with that annoying racket all day long.

    -

    Welcome, Tammi.  Best wishes on your upcoming treatment!  

    -

    If my WBC is up enough I'm due for TX 2 tomorrow.  

    -

    Wishing everyone the best this week - healthwise, weather-wise, etc. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Nikki, please do share how you make the veggie broth. That sounds soothing and nutritious. Plus it counts as liquid. hehe How is it that your company doesn't fall into FMLA guidelines? Guess I'm naive, but I thought FMLA was across the board. I will be doing intermittent std leave if needed. HR fought for my leave during bmx surgery to still count toward the elimination period. Otherwise, anytime I was able to work 15 consecutive days I would have had to meet another 30 day elimination period. Give me a break! I have a micro-manager like you too. She could be beheaded, but would still find her way into work. I only took off three weeks for my bmx, and she was already telling people she was surprised I hadn't logged in because I could probably "use the distraction". Lucky for me though she does understand that I may not be able to predict my time off and has said we will see how it goes.

    Russell, I've heard that vinegar helps with the metal taste. Not sure exactly how to work that into typical dishes, other than adding some apple cider or red wine vinegar to tomato sauce, salad dressings, and such. Pungent flavors should help too, like curry or spicy foods.

    Milkyway, hopefully you are not speaking of the wig falling off in the wind due to experience. ;)

    Tammi, Ciao Bella! You are in the right place to rant, cry, laugh and share with all of our experiences. We are not happy you have to be here, but happy to have you.

    I sported a head wrap to work today. Couldn't wait to get it off for my drive home though. Boy did my head hurt from the creases. I'm convinced I will NEVER wear cousin "it".

    Skigirl, I find the buff so much more comfy than anything else. I don't know if I can get away with it at work though. What are you doing about the stubble falling out? I read on another post, once upon a time, that they were using duct tape to remove all the debris. Send some of that snow this way will ya? We are having spring weather when January is typically our coldest month.

    So glad for you girls with the clean scans! What a sense of relief that is, isn't it?

    Have to say I'm getting a little worried all over again for future tx's. I'm anxious to see how my body will react this weekend. I know Thursday will be easier to take because I know what to expect, but worried the SE's will get more difficult.

    Have to share a cute story. My DGF picked up her 6 yo little boy on Sunday after shaving her head with my on Saturday. She had told him to expect it. So he told her to shave his head that day too and to be sure and pass along this message "Tell Melissa that I told my Mommy to shave my head to be just like her too." She only did a #2 buzz on him, but what a sweetheart.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Bryona, where are you my dear girl? Haven't heard anything for a few days, so I hope everything is going okay post happy hour.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    gd2shuz I'm sorry those didn't work out for you. I'm sure there has to be SOME resource out there. We'll keep looking.  ;)

    kiwikid, giggling at "pooping juice".

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Skimommi, I've been wondering about Bryona this evening as well.  

    Also, love the story about your friend's son wanting his head shaved in solidarity!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Ciao, belle sorrelle! (That's "Hello, beautiful sisters!" See, there I go learning Italian again!)

    I'm sorry for falling off the boards for the past couple of days. It wasn't just here; I stopped phoning and blogging and even Facebooking. I hit a bit of a rough patch, and I sort of curled up into a ball to wait it out. The worst part was that I just felt ... wrong. I mean, I couldn't explain it to anyone, even to me. There was a bit of heartburn, some constipation, some fatigue, but there was something else, too. I felt like I wasn't really there, like I was someone else. I think all the toxicity made me feel a bit depressed (which is totally unlike me), and then because of my fuzzy chemo fog, I didn't recognize those feelings. Does that make any sense to any of you? Anyway, I'm hoping that next time around, since I know what's going on, it won't throw me so much.

    On the bright side, today I'm mostly feeling more like myself, and now I'm looking forward to a week of relative normalcy before my next tx. Woohoo!

    tammi, cancernoway, and Mermaidia, ciao belle. I'm glad you've found this amazing group of women.

    Lee, fingers crossed for better WBC numbers and a successful second visit to the bar. I've got the emoticons all ready to go... although I admit that it's difficult to capture the "boobless ball of fire," since most balls of fire start off boobless. At least, so I've been told. :)

    gr8flmama, good luck with your first happy hour tomorrow. I hope the bartenders are easy on the eyes and the drinks are easy on the body.

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  • Giraffe1143
    Giraffe1143 Member Posts: 1
    edited January 2013

    I am from MI as well starting T/C as well. Was offered a 3 drug combo but with the chance of heart issues opted against it. Glad to have support of others going through this journey.



    Will keep you posted. Have. Great day! The one thing I can say is my support system rocks!



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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Yes, Bryona, it makes perfect sense!  I'm at the end of day 21 and still not feeling quite like myself and I'm hoping this new me won't always feel like she's got a fuzzy yellow tennis ball stuck up her butt (if that makes sense - lol!).  Actually, that's today's sensation.  I haven't felt like that every single day...

    I haven't figured out a way to describe this feeling to the doctor when I see him tomorrow so I'm hoping I'll wake up and it will be gone so I won't have to invoke the tennis ball imagery Smile

    Mind you, none of it has been what I would describe as even close to being awful - it's just not normal.  And I've had days where I felt pretty darn good so really, I've got nothing to complain about (too much).

    Have you tried the Prilosec for the heartburn?  

    --

    Giraffe, welcome to the club no one wants to voluntarily join.  Wishing you a great day/week as well. 

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    For dry eyes, just get some Visine Saline solution.  I usually only have a couple of days where this is a problem, but it is easily treatable.

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Tammi, it appears we are neighbors!

    It is overwhelming, but the doctors and nurses are dedicated to minimizing side effects.  You will have days when you feel like like a slug,  but you will also have days when you will feel like a warrior. 

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    AC#2 Day 5 -  I cannot believe how much I have slept the past few days, but it sure made the time pass quickly.  My brain scan came back negative (Yes, Doc, chemobrain is real!),  so at this point every nook and cranny of my body has been tested for cancer, and it is clean. Any rogue cells will die a thousand deaths thanks to chemo. 

    STD allows for part-time or full-time leave. To all:   While you are on STD, your employer does not pay your salary on days you cannot work.  The insurance company is paying your salary; the insurance premiums that you and/or your employer paid to the insurer cover this.  Keep your boss in the loop, but they are not involved in any decisions regarding your leave--the insurance company is responsible for determining your leave eligibility, and there are a lot of regulations that they follow which protect you.    

    My further advice:  If you are taking leave for a day or part of it, use the time to get healthy (You will need it!)  If you log in or accept calls, people may make assumptions that you can do some work on your rough days and be disappointed when you cannot always do this. So, if you are on leave, turn the phone off and don't log in.  Rest!  You deserve it!  And, you will need it.


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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    cancernoway,

    I live 35 miles from my treatment center and I drive myself. I did have DH do it the first time because I didn't know what to expect. I don't take any anti-anxiety agents and I can drive fine on small doses of pain meds. Nothing they give me makes me sleepy, ( I wish) the steroids actually wake me up. I am so relieved another one is over that I felt good when I left.

    Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Bryona,

    I know about that weird feeling you can't even understand yourself. I have been describing it as a foggy, fuzzy feeling of an alien. I don't mean alien in a bad way just that everything in my body feel different, not necessarily bad but not good either. Hang in there girl we need you as you are a bright spot on these boards.

    Sheryl

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Bryona, yes I had that feeling the weekend following my tx. Told friends it was kind of like being in a dream, like I wasn't fully there, and also as having an out of body experience. I knew what was going on but didn't quite feel like I was fully there. Yes, very hard to explain! Glad you are back with us and feeling better.

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  • Rhonda2
    Rhonda2 Member Posts: 133
    edited January 2013

    ColleenKelly,



    My port is put into the vein in my neck and the pulling sensation only lasted about one week. Now I don't even notice it. The actual port is placed near my left shoulder so the seat belt in the car rubs against it, which I notice every time I drive. I've tried padding and pulling the seat belt strape to the side, but then it defeats the purpose of the seat belt. I must be healing from the surgery because the skins around all of my incisions inches. Let us know how your treatment goes!



    Cyber hugs to everyone,

    Rhonda

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Thanks Rhonda. Did you have any pain with it? Colleen

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    Good Morning girls! Welcome Giraffe. I love the line "the club that nobody wants to join"... who was the first to come up with that?  Good one though.  

    LeeA, I loved the tennis ball analogy, I was trying to think of one this morning as I am experiencing that myself.  Even tho I have not taken any pain meds in at least a week, and then it was only once, I constantly have that feeling even when I am able to evacuate. I never had a problem with that before, but it seems to be pretty constant since my BMX on the 7th. I wonder why it never went away.  Next payday I will be starting to buy my "survival" meds, and stool softeners will definitely be on the list.

    Zorina, thanks for the info re: STD,  I didn't realize that the employer doesn't pay. 

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Bryona, I haven't had chemo yet but what you are describing sounds like how I get sometimes when my anxiety is out of control. It feels like you are disconnected. Almost like an out of body thing. I am going to be in big trouble with chemo if I already get this way without it. Good luck to all who are hitting the bar today.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    gd2shuz~Im also on SSDI. I've been wondering if they allow any more compensation when BC is involved. My DH has been working through temp services and we've been surviving on 2-3 days pay per week. It's been rough. BC is stressful enough without the added stress of finances.



    Blessings

    Paula

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Ciao, belle! I just wanted to let you all know that our Nancy went into the hospital yesterday with severe dehydration and low blood pressure. Let's send her lots of love and prayers from her chemo sisters. Feel better, Nancy!

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    Here is the link for a free head wrap:

    goodwishesscarves.org

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  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Good morning girls



    Day 4 of round 2 today. Had a good sleep but woke with some breathing or palpitations around midnight?! Going on last time today will be my foggiest tired day, so just got to get through it.



    I call that out of body experience my jet lag, it's like a different side of me that I don't know. I attribute it to the steroids I think.



    I've had 10 hours sleep and I'm expecting the demolition next door to start any minute. Ugh.



    I hope you are all having minimal side effects and enjoying being cosy, oh how I wish it were winter!



    Stay strong

    Holly

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    Congrats on the excellent PET Scan results CancerNoWay and ColleenKelly!  That will help your psyche and confidence level dealing with this and getting through the next steps.  

    Colleen - I had the port put in the same area you mentioned.  It was attached to the largest vein (on the right up high).  I felt a tug the entire time.  When I drove, I never liked to look in my left blind spot, as it would tug more.  My port is out and I still have a tug feeling when looking way left or stretching to get something up high on the left, but smaller sensation -- so it must be from the reconstruction now, perhaps the implants are behind a muscle.  

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    Nancy, hope you come home feeling better.  We are all thinking of you right now!

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  • BrandieMcAdams
    BrandieMcAdams Member Posts: 44
    edited January 2013

    I've been purusing the boards purely as a "just in case" kind of measure. I find knowing more helpful in combating stress/anxiety while I wait and you ladies are inspiring to boot.

    For those with dry eyes- my daughter has a serious eye condition (she was thought to have corneal dystrophy...now they aren't exactly sure, but her eyes are severely dry) and her eye specialists stress the importance of buying eye drops without perservatives as those with perservatives can cause you to be dependant on them or worsen the problem.

    Obviously you should check with your doctors before using anything, but there are drops that come in individual use packets and those are the best ones at preventing nasty bacteria buildup in the traditional bottles (because if you touch the tip to your eye lashes you could potentially be harboring germs in the bottle).  You can also ask for ointments to use at night that will help build up moisture during the day.

    know that I'm praying for you all!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    Hi Tammi,

    It's nice to meet you - and welcome to our boards.  If there is anything we can do to help, please let us know.  Sending many hugs and prayers.  We'll be looking forward to hearing your updates.

    Hugs!

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    So sorry Paula. You definately don't need the added stress. I know most of us don' t like to ask for help but check with your community and see if they have some sort of program where they do fund raisers for families dealing with cancer. I live in a wonderful community in Phoenix where they do that. I haven't asked for the help yet. But if I need it I will. Also there are usually organizations like salvation army and stuff that will help with utility bills and things if anyone's finances get that bad. Take care, Colleen



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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Hi Brandie, hoping you don't have to go through chemo but if you do know that we are all here for you. I am just starting my chemo on Monday. It is helping to read what the ladies here have to say. Thank you for your prayers. We will be praying for you also. Colleen

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