January 2013 chemo group

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    Mmmm, beeeer. 

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013
  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    yes, I agree Mmmmmm beer. lol

  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    How long after your surgery did you start chemo? My staples were removed 2 days ago. 

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    {{crying}}I want a beer. I haven't had beer or wine since august 30 :(

    gd2 who are you asking?
    me? surgery 12/26 (no staples, dissolving sutures), first chemo today 1/18

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

    I'm really behind on this thread.  There's so much happening with everyone! I'm so happy to read that, for the most part, things are going fairly well with the ladies (and any lurker guys) of our January 2013 start group.  

    Today (Friday) is day 17 (counting infusion day) and my hair started falling out in strands.  Yesterday - nothing.  Today - quite a bit.  Enough for me to clean it out of my brush and take before/after pictures (before shower/after shower) to text to my husband - lol.  His reply was a four letter word that starts with s and ends with a t Surprised.

    After I had my fills (breasts, not nails) I decided to go out - by myself- for a healthy lunch and sat outside in the 80+ degree weather (yay!  It's been so darn cold) and brushed hair away from my chicken kabab plate.  I then had a light bulb moment when I saw a hair salon across from the kabob restaurant and thought "maybe I'll have it cut!"  (I haven't really had a plan of attack when it comes to the hair - although I've had my wig for about six or seven weeks and every time I look at it I think of the line from the Jane's Addiction song).  

    Since my hair stylist is 100 miles away I decided to go to Fantastic Sam's and now my hair is shorter than it's been in years.  Strangely enough, the stylist was going to take it shorter (based on what I told her about it coming out this morning) but she said as she was cutting it my hair loss was on par with other clients' hair loss (i.e. non-chemo clients).  Strange.

    I was kind of hoping that a forehead lift I had 11 years ago might have left me numb enough in the noggin to somehow escape chemo-related hair loss (ha ha, hope - it DOES spring eternal) but my oncologist said "don't bet on it."  On the other hand, I'm so intrigued by Paula's hair situation!  I'm trying to will my locks to take the Paula Path! 

    On another note, welcome to the newcomers to the thread.  No one wants to be here but since we don't have a choice - this is the best place to be and I truly believe we're stronger as a team!  

    I wish I had taken notes or opened up a few tabs while reading through all I missed.  One thing is for certain - I took several screenshots of posts that have been made in the last few days.  Thanks for all the great information, you all!  

    I'm up for round 2 next week - that is, if my WBC comes up.  I'm hoping it does because I have these things calendared in and even though I don't want to wish the time away - I've never had a year when I've been so eager for late April to arrive!  

    Wishing everyone a great weekend regardless of where you're at on the path.   

  • Oliverhog
    Oliverhog Member Posts: 74
    edited January 2013

    Haven't been on in awhile.  I really have been struggling post therapy #1 TC.  I felt pretty normal the day after.  Went and got my Neulasta shot that day.  Took Claritin Reditabs (not a pill swallower) for three days and didn't really think it was doing anything.  By Monday, my stinking heart rate, which is always high as a result of the radiation and chemo for Hodgkin's years ago, was like 127.  I don't sleep well at night, if at all.  My body just felt uncomfortable.  I had a left over Oxycodone from the mastectomy, so I took it in the wee hours of Tuesday morning.  That brought my heart rate down to it's "normal" range and kept it there for about ten hours.  Tuesday afternoon, I ended up calling my MO.  She renewed my 'script for the Oxycodone and told me to take it as often as I needed, which has been one pill once or twice a day, along with my 0.5mg Clonazepam at bedtime.  THAT has helped with most of my symptoms.  I haven't had any bowel issues one way or the other.  My appetite is better than I thought it would be, but I have a feeling I'll end up skinnier on the other side, which I definitely DO NOT want.

    My MO thinks it may have been the Neulasta that has made me feel so bad, so she's thinking of reducing the dose next time.  I took my third dose of Levoquin, my prophylactic antibiotic, that I'll be on for five days starting on day six of each treatment; because of my history with low WBCs on chemo in the past and since I have no spleen as part of staging for the Hodgkin's in 1985.  

    As for the hair loss - been there, done that.  It really sucked.  If I recall I was completely hairless.  I certainly remember the down there hair not being down there because my ex had something to say about that.  I remember my dad asking my mother, "does she have any eyebrows or eyelashes" while squinting at my face from across the room with a puzzled look on his face.  And, my older sister just had to have a picture.  I did not want her to take the picture.  I was heart broken and beside myself with grief over my lot in life at the time.  I'm prepared to be hairless again.  When I was going through the radiation for the Hodgkin's I had gotten on a hospital elevator with a woman who told me she was undergoing chemo for breast cancer.  Her hair was about 1/2 inch long.  I thought she looked stunning because she had the strength and nerve to go out in public like that in 1985, which wasn't all that usual back then.

    I used to make this rat face for my college room mate where I'd roll my top lip up inside against my gums and squint my eyes.  We'd laugh because she said I looked like a rat.  I told her I'd post a photo of me bald making that rat face.  I'd look like James Carville.  I tried the wig thing and couldn't stand it.  The hair starts growing back so quickly, it almost isn't worth it.  But, then again, I never go out of the house.  I can afford to be bald.  

    Bottom line with the hair loss is that it definitely is traumatic.  That seemed to bother me the most about the chemo. Most women want beautiful, thick, manageable, shiny hair.  I don't know too many that actually want to be bald.  I think cutting it short and then buzzing it are by far the best choices.  My hair was mid way down my back and strands and strands were falling out every time I touched my head.  It was gross feeling it slide down the backs of my legs in the shower.  It was gross picking it off my clothes.  It's gross when you're folding the laundry and there's a huge wad of hair in a tangled ball stuck to a shirt, or two or three.  We will get through this.

    My way right now is with my Oxycodone, fluids all the time, eat when I can, Clonazepam and lots of naps.  

  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Paula, thanks for the tip about Sudafed. I'll give it a try. I feel like that headache and bad food choices the first night got me off on the wrong foot, and I still haven't quite recovered. I'm trying to look forward to "getting it right" next time, rather than worrying about it. Every little piece of advice helps! :)

    Lauren, I know what you mean about the different directions we hear. It is a bit frustrating; I wish everyone agreed. But maybe you could use those mixed messages to give yourself permission to listen to your own body a bit more. It sounds like your body is giving you lots of information about what it wants and what will make it feel good. And, as far as your pictures, I think you should post whatever you feel comfortable with. There are no wrong answers, only what feels best for you.

    SeattleMama, good to see you. And wow, that was a speedy transition from surgery to chemo! (gd2shuz, I think I've heard it's usually 3-4 weeks after a lumpectomy, 4-6 weeks after MX. But then in comes SeattleMama, setting a new bar.) I'm guessing they moved you along more quickly because of those nodes. Here's hoping your Adria/Taxol cocktail is a real cancer-killer. NED, NED, NED!!!!

    Lee, cute new pic! And I know what you mean about wishing the days away; I don't want to do it either, but I am SO ready for June. Actually, ready for August and the end of rads. Actually, ready for March and the end of Herceptin. Or should I say I'm ready to be done with Tamoxifen? Nah, putting that date in print is just depressing! Anyway, fingers crossed for higher WBC for you. I'm looking forward to a boobless ball of fire Wednesday night!

    Oliverhog, I was just wondering how you were doing. I'm sorry to hear that it's been such a struggle, although being able to keep your heart rate "normal" with the oxy is a good thing. I hope the next treatment goes a bit better with a different Neulasta dosage.

  • Nanc620
    Nanc620 Member Posts: 38
    edited January 2013

    Buon giorno, Bellas!!  

    I hope that is how I should spell good morning to you all...what a WTF ride this stuff is...At the bar I was fine, chatty, happy, no problems.  Next day same thing (well, except for my power 'roid buzz).  Taking all my meds in order, writing them down just like a good girl.  Slept well last night (thank you Ambien CR!) .   Today I felt a foggy mess. Doing Claritin, Advil, last compazine J.I.C..  Tates buds way off. I felt like a crazy lady today...without the crazy energy.  I can't imagine the bone pain without pain killers.  I am assuming the Claritin is working but I'll admit I'm dipping into my post surgical stash of Oxy in a few minutes.  I am trying so hard to acknowledge and honor the chemo ninjas (Well Done, Messrs. et Mdmes!) but I'm ready for an epidural ;-)  Actually I'm whining.  

    Please if you are on Facebook come and join us.  It is a secret group so you won't be able to search us out...my name is Nancy Prior Phillips and once I get your Hello I'll send you an invite.  Debbie is also doing a great job, no she is doing a better job of getting bellas on board.  We have decided to do sashes like the girl scouts, earn patches (no hair patches!!) and have some fun.  Deb debuted a wig today and she is stunning!  I'm not even a week out yet but I'm ready (I am not ready...) I did wear a hat all day around the house just to see how it felt.  The dogs didn't mind at all...

    For our sisters here who are so young, so beautiful and filled with life.  Please let us mamas honor you, hold you up and get you there safely.  I love you each and everyone...and am so thankful we are here for each other.

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

    Oliverhog I've been wondering about you too.

    LeeA, I love that you pointed out your fills were "not nails". LOL  When you mentioned the Jane's Addiction song I immediately heard "Here we go . . .  ". If anyone is a Jane fan you will know.  ;)

    Any suggestions on what we can do for pedicures? I need one so bad, but am afraid to even use a stone on my feet for fear of it being "too much". Maybe I am just over thinking this.

    It's Saturday, and here I am all bright-eyed and bushy-tailed at 4 am. My damn internal alarm clock doesn't have a weekend setting. Found myself freakishly feeling around my pillow in the dark to see if I am leaving strands of hair. Thinking I will wash and style it once more and then off with it tonight. Going out for brunch and fishbowl bloodymary's then wig shopping with some DGFs today. Although it would be easier to try the wigs without hair I'm just not prepared to go out there without it yet. One friend told me I shouldn't take it off yet and wait until I am absolutely certain it will ALL come out. But as I described to her I don't want the trauma of seeing fists of hair coming out. I can literally pull (and pull is a little exagerated because it is really more of just running my hand through my hair) and several at a time will come out every time. Saw one fall on the dinner table and that is just about enough of that for me.

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    Lol I heard Jane's Addiction too, I saw them play with the chilis in Seoul in 2002, a lifetime ago, it was a great concert.

    My song of the moment is faith no more's falling to pieces. It's so old but I've always loved it. Here are the lyrics if anyone's interested. I'm an English teacher btw, so I'm all about words! Xx



    Back and forth, I sway with the wind

    Resolution slips away again

    Right through my fingers, back into my heart

    Where it's out of reach and it's in the dark

    Sometimes I think I'm blind

    Or I may be just paralyzed

    Because the plot thickens every day

    And the pieces of my puzzle keep crumblin' away

    But I know, there's a picture beneath

    Indecision clouds my vision

    No one listens....

    Because I'm somewhere in between

    My love and my agony

    You see, I'm somewhere in between

    My life is falling to pieces

    Somebody put me together

    Layin' face down on the ground

    My fingers in my ears to block the sound

    My eyes shut tight to avoid the sign

    Anticipating the end, losing the will to fight

    Droplets of "yes" and "no"

    In an ocean of "maybe"

    From the bottom, it looks like a steep incline

    From the top, another downhill slope of mine

    But I know, the equilibrium's there

    Indecision clouds my vision

    No one listens

    Because I'm somewhere in between

    My love and my agony

    You see, I'm somewhere in between

    My life is falling to pieces

    Somebody put me together

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

    kimmeam just think, that's right you ONLY have 5 more to go. And the count down continues. You've got this and it will be over with soon. Just think, this is but a little blip in our lives.

    Sheryl, that drilling is the worst! Bet you are glad to be done with that. You are one strong mama!

    Colleen, that is probably why they don't give us images of scans and such typically. We all would probably have the same reaction, trying to diagnos and figure out what the heck is going on there. Very normal in our circumstances to automatically go to the worst case senario. So just put it away and wait to see what the doc has to say.

    Amrdbit thanks for the juice idea. That sounds great and I can't wait to try it.

    For anyone that wants to try a great green smoothie here is another. I was amazed at how delicious this was, but it relys on having a really good avocado. Recipe comes from Paula Abdul - 1 cup kale, 1 cup spinach, 1 1/3 tbsp hemp seed, 1 tsp chia seed, 1/2 avocado, 1/2 apple, 1/2 banana and coconut water.

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    On a brighter note, I've made a decision, ("indecision clouds my vision") I want a mx, perhaps bmx. The road with rads is black and scary and I don't know why but women's intuition is screaming at me to avoid rads at all costs. So I should, right?



    Kia kaha beautiful ladies.



    Xx kk

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

    Lauren, your pic is beautiful! The baking soda/salt rinse works wonderfully, but I always take a drink of whatever I'm drinking at the time to get rid of the taste. It isn't horrible, just salty. There isn't a real aftertaste.

    It also helps to keep thrush away by taking acidophilus everyday, and eating yogurt. Thrush is a yeast infection caused by the good bacteria being compromised. Acidophilus and yogurt promote good bacteria. Just refrigerate the acidophilus after you open it, as its live cultures. My onc was very happy to hear I do this. I do it he first week after chemo, then stop till next treatment.



    Blessings

    Paula

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

    Skimommi~My onc said, going for professional pedicures is fine, but BE SURE TO TAKE YOUR OWN STERILIZED TOOLS. That way you know what's being used on you.

    I imagine doing your own pedi would be fine too, just don't go too short, and again, sterilize your tools.



    Blessings

    Paula

  • louise8118
    louise8118 Member Posts: 5
    edited January 2013

    I haven't seen an answer to Lauren's question about hydrating - can we stop after a few days or is this something we need to be doing for the duration?  Also anti-nausua pills - is this a sometime thing or do we continue?  Tired of getting up every few hours to pee!

    Day 5 and I still feel pretty good; been walking on the treadmill every day.  Too icy to go out.

    Louise

  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Thanks, but you know I'm the one on the right - my daughter is the cute one :-)

    How do you buy acidophilus?  I never wrote down the mixture for the baking soda - would you please let me know how to make this concoction and what exactly to do with it?

    What's thrush?  So much to learn - Oy  vey.

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

    Paula, what exactly is Acidophilus? Thanks for brining up the idea about drinking something between the salt/baking soda rinses. I hadn't thought of that and also have the awful gag feeling when using it. I stopped a couple of weeks ago because I can't take the after taste. But, do you think drinking depletes the purpose of the rinsing? Don't care, I'm going to try it.

    kiwikid, these decisions are tough ones and everyone certainly has to choose their own path. Personally I always had known that I would do the bmx if this came up. My mom had bc at 36, bmx, chemo, rads, the whole thing. Then had mats which took her from us at about age 46/47. Of course back then they didn't have the technology they do now, so my guess is that it had already spread beyond what they knew at the time of the bmx. Anyway, I knew I didn't want to always be looking over my shoulder. Lots of women don't go this route and it is probably fine becuase of the treatments available to us now. It is defintely a personal choice, and many, many factors go into that choice. There isn't a wrong decision. I firmly believe our paths are planned and our bodies are going to do what they will.

    Speaking of song lyrics . . . when I was first diagnosed the song "Other Side" by Evanescence kept playing through my head "Counting the days To meet you on the other side, I will always be Waiting Until the day that I see you On the other side Come and take me home." Okay, awful I think.

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

    Paula thanks for the pedi tip.

    louise8118 you need to stay hydrated always! I've had the weird feeling like after a few days there is nothing else going on in our bodies, but that just is not the case. We may feel good and normal, but those toxins are still there and working around the "house". Hence the hair loss two weeks post happy hour. I had stopped hydrating and had a really bad night. As soon as I downed the water it hepled me immediately feel better. But remember, everything counts as long as it is not caffeinated - juice, broth, electrolyte drinks, etc.

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

    Louise~I do my best to hydrate for a week after chemo. I don't have much taste between day 6-8, so it's harder then, so I drink Gatorade those days. Since I can't taste it's harder to hydrate, so I figure I'm getting more benefit from the Gatorade (I drink the low sugar G2).

    I've taken no nausea meds and I had AC #3 yesterday. I get steroids along with IV Emend & zophran at infusion, and I take steroids per orders on days 2, 3, & 4. I've never even opened my compazine. I do take Ativan at bedtime only on the 4 days I take steroids.



    I find that my 3 bad days are the ones where the steroids are waving bye bye as they stick their tongues out at me. Lol



    Blessings

    Paula

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Louise8118- I've gone down to 2 litres of water a day now. I stayed at 3 lites for the first week. They want you to flush your body for a bit after your TX to get it out of you. I stopped my nausea meds 7 days after TX. No one told me when, so I just listened to my body.

    Skimommi- I tioally feel the same as you about your hair. I just don't want to deal with it falling out on everything. It's coming off today or tomorrow.

    So, this whole time we/ve been worried about me catching a old during this aweful flu season. We are total germaphobes at home and if we are out. Well, My DH is really sick. Massive head cold... poor thing. He is really stubborn about meds too. I forced a sudafed in him this morning. And I am going out today to get some theraflu or something he can stand over a hot steamy pot and try to unplug his head.

    Has anyone noticed how we are tough as nails through all this and guys (in general) fall to peices when they get a cold? LOL  Mine is pretty good, but man he is really sick and I feel bad for him.

    Happy Saturday to all of you!!

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

    Skigirl~You hit the nail on the head. I had a triple whammy cold last week that hit during my nadir period following AC #2. I fought it off without any help from docs. I used Tussin DM from the Dollar General, along with generic Sudafed. I guess it paid off, because my WBC was higher yesterday than it was before I started chemo. On the other hand, if my husband gets a little head cold, he has to go to bed for 3 days. WHIMP!!!



    Blessings

    Paula

  • louise8118
    louise8118 Member Posts: 5
    edited January 2013

    Thanks!  I just jumped up and poured a large apple juice.  So I will be sloshing some more.

    Louise

  • honeybair
    honeybair Member Posts: 746
    edited January 2013

    I am so amazed by the encouragement and positivity in reading your posts on this 2013 chemo group of which I am now joining.  Most of all, I can no longer feel sorry for myself because I am seeeing how young so many of you are.  I am fortunate to be much older with no job or children to worry about.  I am surrounded by caring and wonderful friends, two loving daughters and the best husband a woman could ever hope to have...one whom I met and married when I was 60 years old.

    Yesterday was a crying day for me and last night was joyous because we had friends come over to watch a movie.  I so cherish my friendship with these special people.  If we can make it through the treatments, we can make it.  Of that I am hopeful.  We are all connected and we need one another.

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

    honeybair~I too am an older BC fighter. I was 62 in November. I have a great husband, and 2 grown sons ages 24 & 40.



    I'm amazed at the young women in their 20s, 30s, & 40s, on here, and to think they don't even start mammos until age 40. The medical field needs to come up with a better plan.



    I'm glad you found us. We are a SISTERHOOD. Welcome to the Family!



    Blessings

    Paula

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Honeybair- Cherish your friends and family! They all are telling me they are so proud of me for being strong and tackleing this with humor and strength. They have no idea they are the reason I can be so strong and face this ugly monster. They are the ones that have held me up and said 'now go and fight!'. I am 40 years old with a 10 yr old boy! I have no intention of leaving him without a mother and I have so much more to do. I am going to need at least another 30 years to do all the things I want to do. So, stand up tall... you have a great support base. You can do this!

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

    My first breast cancer scare was when I was 32 and my son was about 2 1/2 years old (this was 1990 or 1991).  Fortunately, it was just that - a scare - but it was the same breast (the left - always the same breast).

    That said, I was so relieved to dodge the bullet not only then but in 2003 as well.  

    My son is almost 25 years old and I can't tell you all how often I think back to those earlier scares - when he was so much younger.  

    I have such great admiration for those of you going through this with younger children and I agree with honeybair and Paula - you all are such an inspiration.  One woman who posts on the Triple Positive thread has five children under the age of ten!  I felt such sadness when she posted that a few of them are just too young to understand why she can't pick them up like she always has and I immediately flashed back to that first scare, when my little one was still so...little.  

    One thing is for certain:  everyone around here, regardless of age, is strong, tough and determined.  Thank goodness we have a way to communicate with one another!    

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

    Paula!  That is so great regarding your WBC!  Mine was 1.9 at one week and 1.8 at week two.  I'm sure hoping it goes up enough to have chemo on Wednesday (good grief, I never thought those words - in that order - would come out of my fingertips).

    Your hair is holding on and you bounced back on your WBC!  

  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    Ladies, HYDRATION, I'm telling you = NUUN http://nuun.com/  I have it at my local grocery store, drugstores have it, any sports retailer.  I find out about it midway thru first chemo.  It really helps, unless you like to suck down gallons of water :P I don't ((LOL))

    "Here We Go!"  yes, that rang in my head......especially, since my name is jane :P 

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

    Lee~I love your pic. So pretty.



    Thanks for sharing.



    Blessings to Y'All

    Paula

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