April/May 2012 Chemo hang out

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    nofear2012- Sorry to hear you still have tummy issues and not eating.  Having something in your tummy does help the tummy issues and will give your body some fuel to get better.  I know it's hard..... I cried the other evening at dinner because I was so disappointed that the food I put in my mouth didn't taste like i thought it should.  Yep, under normal circumstances, a little childish and dumb but the current circumstances aren't what used to be the "normal circumstances."  Since then, I have laughed at myself and the silliness of the moment and glad I can express share my joy and sadness over simple things openly and with everyone.  I have three more rounds of chemo so I''ll be with you holding your hand and letting you know that it is more than just " we can do this", we are doing this!!!  HUGS to you.....
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  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Rgina:  Love your new pic. I just have to get the energy to take a pic of myself.

    Thank you to those who have brightened my day with your humor.  I have been just sitting here all day, trying to get enough energy to just get up off the couch.  

    We have NO family here.  Talk about me feeling guilty about asking my DH for everything.  He is GREAT!  Both my kids live in Chicago (150 miles away.  We are empty nesters--yeah!), and the rest of my family lives 450 miles away.   I feel so dependant on him.  Thank God I have such a wonderful support system of friends here.  I am so blessed.  

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  • Caths-friend
    Caths-friend Member Posts: 2
    edited June 2012

    My best friend was recently diagnosed with TN...she has had her bilat mastectomy and goes to the oncologist tomorrow (blah)!!!  I would love advise on how to best aide and support her.  What are your favorite things that friends did or didn't do for you.  I would love to hear your input.  I just feel helpless.  Thanks

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    kjliberty- Feeling better today?  No hives, I hope!!!  Just made myself get up and ride my exercise bike a whopping 5 minutes..... Woo hoo!!! 

    Hope everyone's side effects are minimal and everyone is enjoying the weekend!!!

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  • nofear2012
    nofear2012 Member Posts: 160
    edited June 2012

    Mel - thanks so much for the support & encouragement. It helps & I know I need to stop thinking about this & just get this done. 3 more times will come & go quicker than I know. Best to u as well.

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    Hi, Caths-friend!  You do sound like the best kind of friend.

    Well..... not knowing your friend's age and circumstances, I'd say helping with housework, kids (i.e., taking them to and from school, sports, play dates), yard work, and just being around and listening to whatever she feels like talking about.  Also, my friends stepped up big time for me before I started chemo and got me a huge care package that included all kinds of things from the Tips thread on this forum; like eye drops, hard candies, crackers, hand lotion, hand sanitizer, and several gift cards to various restaurants.  Some of them have also brought by freezer dinners and that's always helpful too. 

    And before I forget - unless her chemo lounge isn't like any other, how about going with her to a treatment and keeping her company?  My two grown sons have been my chemo buddies so far, and some of my friends are planning to come to my next treatment.  It's amazing how much quicker the time goes and how much easier it seems to be when you have diversion of some kind - and somebody to talk and laugh with is the best kind of diversion!  My chemo place told me I can bring any electronic toys I want, and so far I have brought a DVD of a favorite comedy movie, and my sons and I have watched it on my laptop while I'm "hooked up."  

    If you are like my sis and are the type that faints at the sight of blood, this might not be for you, but it's something I honestly would never have thought of until this happened to me.

    If your friend is the kind who has a hard time asking for help, don't assume because she doesn't ask that she doesn't need anything, and also, if you don't hear from her, that it means she feels too awful for you to call her and tell her you are thinking of her.  

    I sure hope this helps you!  All the best to Cath.  

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  • Caths-friend
    Caths-friend Member Posts: 2
    edited June 2012

    Thanks so much...great advice!!!  I am a nurse so I hope not to faint although watching someone you love hurting can be hard.  She can be a little hard to read sometimes, but texting sometimes gets the conversation rolling.  I will look at the tips page.  Hope all goes well for you.  thanks again

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    nofear2012- Time to give yourself a BC break--- go do something fun.... go shopping.... watch a silly movie..... read a magazine..... give yourself a break.... doesn't matter how long it's for----- 5 minutes.... an hour...... just take a break.  You didn't do BC 24 -7 before your diagnosis and guess what you don't have to do it now!!!!!  Just be easy on yourself..... we are getting through this!!!!
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  • lisa2012
    lisa2012 Member Posts: 652
    edited June 2012

    Wow, amazing to see how many of us (previously healthy for the most part) deal with that emotional stress of guilt/ sadness/shock of not being the same OK person who handled stuff- now seeing emotions go up and down, tears (even in public sometimes) and confusion. Am I really dealing with a life-threatening disease? I felt fine till chemo started...the BMX was a chore but different. But my mobility was shot... Screw it, why keep thinking about it. It does help to hear our stories here, in this online support group.. At least I'm not crazy and the only one. Hugs to all.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012
    mistym - I have had several times where the guilt feeling has overwhelmed me...mostly feeling guilty for "ruining" our (DH and I) lives. It sounds SO stupid and ridiculous when you write it out, but you can't help it when that feeling comes over you. It's not rational, but it is a real feeling.  I remember the night DH had to take me to the ER - I bursted out crying "I'm so sorry for ruining our lives!"....and then bawled some more.  Of course DH said something like "You didn't do this, cancer did it, etc." and then started crying with me.  Ugggh...what a night!  And yes, it is good to have a place to share it and get it out!  No wonder some people have PTSD-type symptoms after going through cancer treatment.  Who wouldn't? 

    eileenmarie - wow, your SIL sure is a piece of work. I cannot believe someone would say that!  Forget the constipating meds, go right for the X-LAX.  LOL! 

    Oh goodness nofear!  So sorry to hear about your hospital admission, gracious I thought Taxol would be easier tolerated, too. Frown  I hope you are starting to feel better and am sending healing energy to you!!!  I know how you feel about not knowing how you can get through more treatments.  It seems like such an insurmountable task.  Sometimes it helps me to think of it as just one treatment at a time, that's all I have to achieve.  Easy to say when you are feeling better, not easy at all when you are feeling really crappy.  I've been there, understand. 

    vballmom - <hugs>  Keep on crying, releasing all those bad toxins in your tears.  I don't know if it was here or another thread, but someone said recently that toxins are indeed released in tears.  I like that thought - getting my emotions out and healing myself in multiple ways with a good cry whenever it is needed.  Oh, and I am doing weekly Herceptin, and it is nothing compared to the chemo tx's - so maybe that will help you not feel so overwhelmed about a year of treatments - I know it helps me when I think about it. 

    rgina - your GI Jane cut is AWESOME!  You are rockin' it for sure!  

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    kjiberty, we have no family here either - miles and miles away.  I do have a few local friends who have brought meals, stopped by to visit - and I so appreciate them.  My BEST friends (who I feel closest to) are miles away and are so upset they can't physically be here for me.  They call and talk to me though, which gosh, makes all the difference in the world!  I don't know what I'd do without DH either - and also feel like so much is on him.  I encourage him to go out and do his fun stuff (he's a road and mountain biker) to get his stress out.  Poor guy is just as anxious as me for this to all be over!

    Caths-friend, best thing people have done for me is call me and talk or come over and visit and just spend time with me.  Just being willing to listen to what is on my mind at the time, or keep me company, or distract me - whatever I need at that moment.  And letting me know that I can call whenever or that they are available to run errands for me, etc.  And the biggest thing of all...as time wears on, and it may if your friend ends up needing chemo...don't back away because you are tired of being a support...that's when we need support the MOST.  And contact your friend...I know I often feel like a burden to my friends and family, and downplay what is going on...so they think I'm fine.  Don't assume she's fine.  She needs her friends to be proactive and reach out to her; she may pull away - give her space if she does that - but check back with her frequently so that she can talk whenever she feels ready and doesn't have to reach out to you.  BTW, you are a wonderful friend to come here and ask!!!  Thank you for being there for a fellow bc sista. Smile

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  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    Eileen - I'm with everybody else on your SIL, geez.  I wonder why people think it helps anyone to say something like that??  My DH is known for blurting out eyebrow-raising comments too, but he hasn't even thought of saying that one to me.  (I can tell, lol).

    Claire - glad you brought up Tramadol again, it sure works better for me!  I don't know why our docs are so quick to recommend the narcotic painkillers first.... But Tramadol worked on my awful headaches during txs 1 and 2, and didn't make me loopy, or give me the big C, as you said.  Thanks for sharing your experience, I don't know what to say, but your info and thoughts are always so helpful.  

    I've felt guilty too.  I am not a huge social butterfly, don't have family here locally except for immediate family, and don't have many friends outside work.  I haven't always felt in the past like I was in a position to step in and help others who really needed it because of being needed more with DH.  So when people just stepped forward to help me, I had a lot of "I don't deserve it" feelings.  I hate for DH to see me sick too because it makes him feel all the more vulnerable, so a lot of the time I have to cover up how I'm really feeling, or think hard about how to tell him honestly.  And I hated feeling like I dragged my sons down; neither of them did as well in their classes this past semester as they did the one before. 

    I am paying it all forward as much as I can, but another thing that helped me at least at the outset was understanding that I am no more or less deserving of support than anyone else.  I am taking what life lessons I can from it all and working at being a better person.  

    I won't entirely be an empty nester this coming fall, but DS#2 was accepted to college in a different town.  It's not so far away that we'll only see him at Thanksgiving and Christmas necessarily, but he doesn't have a car and I can see him being happy enough there that he really won't need to be one of those kids who comes home every weekend (for one thing, no girlfriend here to visit).  I am not letting myself think yet about how much I'll miss him.  

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    We are all worthy of love and support by those who surround us near and far.  There is a lot of self introspection with dealing with the physical and emotional changes,  our individual journeys and treatment plans and perhaps not the best of times to ponder self worth.  We all do the best we can do and no one asks any more than that.  Sending out lots of (((HUGS))), positive, healing and calming prayers, thoughts and energy to all.   

    Those girls in the big chair this coming week- You can do this!!!!!

    Everyone -- have a wonderful week and minimal side effects!!!!!

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  • mistym
    mistym Member Posts: 58
    edited June 2012

    Hi,

    Thank you everyone for the words of encouragement and understanding.  It means the world to me to know that I have you all to hang on to when I feel like I am going to fall.  It brings tears to my eyes when I read all of the updates. 

    I think the fact that my pain came back last night didn't help my emotions at all.  I was hoping to really have a feel good weekend before my port surgery on Thursday so was upset that I was not up to doing anything today due to the pain.

    Day 12 since first treatment and the short hairs are coming out fast and furious.  But, my hair in the lower region is also coming out now.  For some reason I thought that might take longer.  Maybe I will only have to shave my legs one more time! Embarassed

    I tried to drink a glass of my favourite red wine this evening. I had one sip and it just didn't taste good at all.  So no more wine for me until I celebrate the end of treatment.  What a party that wil be!

    Big hugs to you all,

    Misty

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  • nofear2012
    nofear2012 Member Posts: 160
    edited June 2012

    WOW we are all such amazing women! No more needs to be said.

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    NoFear:  You said it!

    Melrose:  I was feeling kind of poopy today; took my temp and it was 101.9!  OMG!  I took tylenol, and it's come down to 99.9.  I was worried I would wind up in the E/R.  Feeling better since the Tylenol.  Rash is better, but still there.

    Caths-friend:  Just be there for her. Listen to her; let her cry; cry with her.  Just let her know you are there for her.   

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012
    kjiberty, I highly recommend you call your onc and report your symptoms.  The tylenol may be masking the fever and you don't know it, but you have some kind of infection...don't want to freak you out, but I want you to be safe!  You aren't supposed to take Tylenol (according to my onc) with a fever b/c of this very reason.  Often with a neutropenic fever the only sign is a fever -no other symptoms.  Again, I don't want to freak you out - may be nothing or a reaction to that rash.  However I just want you to take care - worried about you! 
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Kjliberty-  Please call that onco about that fever and that rash!!!  I, like dancetrancer, are very concerned about you.   As you recall, I had that spikey fever after Round #2.  I did exactly what you have done, took a dose of Tylenol and fever went down.  However,  I knew that once I had those chills and did not take a second dose of tylenol and had that fever started to spike, I just had to call in immediately.  The onco's office as since told me that I did the right thing by calling in asap and didn't wait.  I know that going to the ER isn't something anyone wants to do under any circumstance but sometimes we just got to get there so we can get things taken care of.   My onco kept me out of the ER by ordering some antibotics but I was ready to go if I had to.
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  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Dancetrancer:  Thank you, and thank you so much for caring.  I will call.   

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  • vickilind61
    vickilind61 Member Posts: 338
    edited June 2012

    rgina, love your new pic!

    kjiberty, I agree with dancetrance; call you MO in the morning.  I figure it's better to be safe and since we are in such an "altered" state, given the cancer and all, just call and go see.

    And to all the empty nesters, I really thought I would hate it, but I must admit I am enjoying it.  To be honest, my oldest and youngest live in town and I see them pretty regulary, so I get to enjoy them but have the house to just DH and me at night.  Nice.

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  • Fierro6
    Fierro6 Member Posts: 224
    edited June 2012

    I don't know if this will help anyone else, but it's sure helping me.  After my MX, I mentioned to my mom that I just wanted things to "be normal again."  She told me, "Things are normal.  It's just a new normal."  That was nearly 2 months ago.

    This Tuesday, I go for my MO appointment, followed by my first chemo treatment.  Of course I'm worried, and I said (in front of my mom) so much for my "new normal.  That one didn't last long."  She told me that it's another new normal.  I realize that she's helping me quit wishing for the past, and to learn to live within what is going on now.  This is my third different "normal" in 3 months.

    If you don't have a warped sense of humor, stop reading now:

    So, I decided that I need a new name for each "normal" that I experience.  I suggested "Roz" or "Nacho."  Someone mentioned my love of Skittles, and I decided THAT would be a great name, TOO!  Yes, I think I may become "Skittles" for my chemo version of normal, but we're waiting for some more facebook votes to come in before we know for sure.  I also think that the food versions of names may reflect my weight problem, but whatever.  Smile

    Yes.  We ARE weird around my house.  It keeps me laughing part of the time, instead of crying constantly. 

    I wonder how many versions of "normal" I'll see before this is over? 

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  • vjm
    vjm Member Posts: 79
    edited June 2012

    Hi vickilind61 - My DH (does this stand for dear husband or designated hitter?... or both:) and I actually kicked out our 23 year old son when he came back from university for the summer this year. We really need our space right now and are enjoying quality visits from both daughter and son on our terms without shitty parenting stuff mixing in with the chemo energy about our wee spaceSmile. Happily my DH insisted and I am now realizing how great being an Empty Nester is!!!!

    kjiberty - glad to hear you are going to call re your temp for peace of mind. We need it - I am the worse for asking for help and even when I was having a severe reaction to cyclophosphamide during tx #3 I wouldn't let my husband call the RN until I really couldn't breathe and thought my heart was going to pop out of my chest! Nurses are our own worse enemy!!!

    For everyone out there that I don't seem to have the strength or fortitude to track this go-around, we have now extended to the Apr/May/June hangout -  thank you for the ongoing support and sharing! xoxo vjm

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  • vjm
    vjm Member Posts: 79
    edited June 2012
    fierro6 - my chemo sessions became my new 'cocktail hour' with healing nectar from the gods:) vjm xo (your food my drinking)
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  • sandik
    sandik Member Posts: 482
    edited June 2012

    Just got home from Pocono. Had a great time. Took a nap every day. Was nice and cool every day except today when it was 88. Getting ready to leave and the bus blew a brake line. (We have a school bus converted to a camper) After about an hour and some redneck engineering we were ready to go. Hubby, being frustrated, just pulled out, through the rain runoff area, which is a big ditch, and got stuck. Front and back were in the dirt, back wheels were off the ground. Ugh! We were stuck good too! After about another hour and a half and two trucks later, we were out and on our way.

    I've got chemo at 7:30am. I think I'll be sleeping through this one! Last AC! Yay!

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    sandik- So glad you had a good weekend at the race.  I was watching the race on tv and saw a few yellow school buses and was thinking that one of those had to be yours!!  Yay... for the last A/C round tomorrow!!!! Get some good sleep tonight!!!

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  • vballmom
    vballmom Member Posts: 426
    edited June 2012
    kjiberty, my instructions were to call the doctor at 100.5°.    It was warm in my house so I laid in a cooler room for twenty minutes and took my temp again. It was 101° and they insisted I go to the ER.  Basically, they explained that they have to assume that any fever is a sign of infection somewhere. As soon as I got there, they did blood work and a urine test but immediately administered antibiotics, since they said any infection could take days to show up in a culture.  Meanwhile, my WBC was ridiculously low (300?) and they admitted me.  It took five days to get my counts up. I don't mean to scare you, but I do want you to take the fever seriously. I know others on this board haven't been treated for fever so aggressively, so take it for what it's worth.  I was also severely dehydrated.
     
    They've since changed up my meds - daily Neupogen instead of weekly Neulasta and I'm on prophylactic antibiotics.
     
    I am having a little break from the nausea and am in heaven!  Got some bone pain, though.  Yay.
     
    Fierro, we have pet names for everything around here. It keeps the mood lighter.
     
    Misty - I tried a sip of wine. Ugh.  It was awful.  Think of all the money I'll save!
     
    Rgina - love the new picture and of course, the hairstyle since I have the same one.  My head is so pink!!!  Hubby is gonna do new pictures this week.
     
    Cath's friend, the best thing people have done for me is pretty much anything that isn't saying "Let me know if you need anything."  Plain and simple, we're not going to ask!  A meal, a treat, a serious offer for a ride, grabbing the kids for a few hours or offering to pick them up from school or practice...and an occasional email, text or phone call asking how she is will mean the world.  Favorite gift? A Whole Foods gift card. I am trying to eat healthy and it's been wonderful and easy to get something yummy and good for me.  Skip the stories about people with cancer (good and bad) and just tell her how sorry you are that she is going through this and that you intend to see her through!
     
    Sandi - OMG!!!  
     
    Melrose - you are the biggest sweetheart. Your posts are always so warm and positive. Hugs to you.
     
     
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  • vickilind61
    vickilind61 Member Posts: 338
    edited June 2012

    sandik, glad you enjoyed your time away.  And I must admit, your troubles are funny, but that's because it wasn't me.  Wink

    And how exciting to have your LAST AC!!!!!!!  Party for you soon!!!

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  • sandik
    sandik Member Posts: 482
    edited June 2012

    Party in 12 weeks after my last taxol. Haha!

    I

    Thought they were funny too. But then again I was sitting in the air conditioned camper. Hubby was not amused. Haha



    Melrose..headed to bed right now!

    My eyes are watering like nobody's business! Driving me insane! The gel drops are NOT helping!! I want to scratch my eyes out! Haha

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  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    Day 2 after chemo 4 of 6. So many of us are posting today. I am consoled by the topic of emotions because I am not the only weeper. When I read our common SEs I know it is all normal (for chemo). I don't know how I'd get through w/o y'all. Yes it is now an Apr/May/June hang out. For those that weren't here in Apr, there was a reason I started the thread with a 2 month spread. Even though past chemo threads were only for one month, I couldn't bear to split our Mar lumpectomy group. We were not all beginning chemo in one month. It is hard to believe I made that command decision Mar 20th. Time IS passing.

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  • mary71145329
    mary71145329 Member Posts: 133
    edited June 2012

    Hi ladies. I have been trying to keep up with all of your posts even though I haven't been posting. Had TC #2 this past Tuesday. I was good Wednesday and Thursday and felt as though I'd been hit by a truck come Friday. Spent all of Friday and Saturday in bed--alternating between freezing and sweats but no fever greater than 99.5. Pain in legs was pretty intense also. Hadn't eaten or even drank much of anything since it all tasted horrible. Even water was tough to swallow. Woke up this morning, showered and had a productive day. Actually ate and drank almost normal with no aches or pains to boot. Really weird that this treatment seemed to have hit harder but was much shorter lived than the last....and no neulasta shot this time maybe made the difference too!

    Chapter4--your words were so moving. I think you managed to vocalize EXACTLY what we are all feeling at times as we look in the mirror at ourselves. Thank you for letting each one of us know that we're not alone.

    melrose--funny you should say that about looking for sandik on the tv--I did too! lol

    rgina and misty---Love the new looks!

    for all of you having tough days.....Love and Healing Hugs to You!

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