April 2011 chemo

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  • louis13
    louis13 Member Posts: 333
    edited July 2011

    psu.you mean you have been told that? why? on the basis of what?? what is happening psu??

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  • PSU222
    PSU222 Member Posts: 127
    edited July 2011

    Louis13**

    Yes, I was called and told I was underdosed.  Long story that leaves me with so much fear and anxiety.   Believe me he is FIRED and I ran to another onc.  Was told that chemo is something you can't play catch up on.  So now I start Rads and pray a whole lot more.   

    Hope you have a wonderful trip.  That's what I plan to do when this nightmare ends. 

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  • louis13
    louis13 Member Posts: 333
    edited July 2011

    f------ unbelievable, you mean they got your weight wrong, did the wrong maths for you or what?  how can this happen?

    am so sorry psu, am sure they will get you back on track with treatment but i will be thinking of you

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  • artiecat
    artiecat Member Posts: 257
    edited July 2011

    I finally learned that it is okay to say I cannot hear the negative stories.  People dont seem to understand that when you are on this particular journey it is not helpful for them to share their sadness. 

    This is war! And we are warrior women!

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Articat- I can not tell you how many times Ihave told people STOP when they start to tell me so and so died of breast cancer...blah blah blah... Like we need to hear that right? No I get annoyed very easily with that, SO stupid and insensitive  of them to go there. I always say Stop, unless this has a happy ending I don't want to hear it because it freaks me out. Almost always their jaw will drop in disbelief and then they will say oh sorry.

    PSU- My first dose I was over dosed for my metabolism. After what I believe was bringing me to the brink of death  & psychosis with the first dose, they actually reduced mine by 25%. I am amazed that the only consideration is weight. People are more sensitive to meds than others, metabolism should be considered  and believe me the dose on the next 3 was plenty toxic. I keep telling people "If that doesn't kill cancer nothing will!"  If it caused your hair to fall out that means that it for sure hit those newly developing cells which is what chemo does.

    Profbee- how are you doing?

    If you gals have not found the Bonfire of the Goddesses thread yet, take a look. It is a place where you can state that you are throwing things into the fire, like fear, or the chemo chair or anything that you want to visualize being taken out of your mind, body or life. I have been there almost daily tossing things in as they come up for me. I have found it to be very helpful and therapeutic.

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  • pawprintgirl24
    pawprintgirl24 Member Posts: 173
    edited July 2011

    profbee just pray..thats all i can do and from what i understand the her 2 + make it the numbers go down. i have heard my PA say 30 to 50% chance that it won't come back but only god knows that answer. thats what i have to hang onto.

    articat and merilee i stopped going to our bible study/pray list time at church on wed night because i really don't want to hear about all these sick people!!! i just don'twant to hearabout she lost her battle with this.. i want to hear she won her battle!!!!

    i got my paper work out last night to see about my muscle soreness and the twitching and it said call the dr within the next 24 hours!!!! it has been going on for a week!! but i'm not going to worry since i feel find beside everything else. i'm gonna tell them but i think its the chemo just catching up with me... i go today for #5!!!!

    we are warriors!!!!

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  • profbee
    profbee Member Posts: 858
    edited July 2011

    Hey  gang.  I set aside this morning while my son is at school to just lie in bed and be sad.  I'm sorry Pawprint, I don't believe in God.  I was raised Catholic, but I just don't believe anymore.  I am glad that others do because I remember what a comfort it was as I grew up, but I just don't any longer and can't pretend to.  That said, I 100% respect other people's beliefs.  But, praying just isn't an option for me.  

    I'm not sure on the HER2 thing.  I mean, I believe that because of Herceptin we now have a better tool to fight it, but I believe it is more aggressive than HER2 negative, so I think recurrence is actually higher with HER2 positive cancers.  I could be wrong here.  

    I'm just still in a bad place.  Everyone in my family always lived really long.  I mean, my father is 74 and his 95 year old dad still calls him Junior.  All my grandparents lived to be nearly 90 at least.  I've never done drugs or bad things--it's just such a sucker punch!  No one in my family has any type of cancer.  How the hell did I get here?  I'm sorry, women.  I just feel so down about it right now.  

    I'm responding well to chemo--it's shrinking, right?  But I have this MAJOR surgery and subsequent surgeries/procedures that will take up about a year or more of my life still, and my little angel has to watch me go through all this.  I'm just fed up.  I've given this damn thing months already.  Who has TIME for this?!  I have a career and a husband and a child!  I need to get back to my LIFE!  THIS crap is more than a full time job.  

    We have visitors every week (either my mom or my in-laws) so that they can be here for Jack while we're down at chemo.  Thank goodness they're coming, but it feels like one arrives on a Thursday, I go to chemo, they leave on Friday, I do the sheets and towels, and they're back.  I'm exhausted.  I have no energy to do anything fun with my son.  I'm hoping that this week--before my in-laws arrive--I can take Jack to the pool.  I want him to have some summer fun too.  

    I'm sorry for the long rant.  I'm just tired, frustrated, and scared.  Thanks for listening. 

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    You are right Profbee, It sucks and it is no fair. It does feel like a full time job and a kick in the teeth. It is very  difficult  to muster up positive thoughts and feelings when you feel like shit. Here is a therapy technique that has helped me. Are you able to envision yourself with total health? If you can, try imagining it, then try to imagine the emotion that you would feel. I think that thought plus + emotion is a very powerful tool for healing. If you have difficulty with this try saying the words, "It is my intention to have total health" and then quickly think about how good it feels to hug your son. You can borrow + emotion to add to your words if need be and the brain really can not tell the difference. This has been shown in brain scans. I am practicing this several times a day. I borrow + emotion from the thought of how one of my kittens makes me feel when she is purring and loving on me.

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  • artiecat
    artiecat Member Posts: 257
    edited July 2011

    Profbee, I, too, am having neo-adjuvent chemo.  It is discouraging to think that this chemo is really just the beginning of our process.  But it is improving our outlook as well.

    I also think it is "normal" to have these ups and downs.  The chemicals are wreaking havoc on our bodies and minds.  It's okay to have the downs, just dont let them take hold of you.

    Yesterday for the first time since all this started I felt human...went to friends for pool and talk and food.  I am exhausted beyond words this morning, but boy was it worth it!

    Holidays are hard no matter what.  I have been single for many years now - have two wonderful daughters - but I sometimes miss the old family holidays together like when they were young. 

    Power on, warrior women!

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    http://news.yahoo.com/wants-live-forever-scientist-sees-aging-cured-131029279.html

    This is an article about an anti-aging scientist working on ways correcting damaged cells, interesting.

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  • pawprintgirl24
    pawprintgirl24 Member Posts: 173
    edited July 2011

    sorry profbee that i pushed my belief onto you and when you are having a horrible time at that! i hope your emotions get better every day. its all the hormonal changes and the chemicals...just don't let all that take away the strong women that i know you are,  even if we are scared as hell!!! because we all are or we will be on the inside! we will get past all of this!!

     and the HER 2 is move aggressive,and now that they have herceptin to fight it. before it was not good at all but now it is higher percentage that it won't come back.i have been thinking alot about taking them both off but for now i don't have to make that decision just yet.

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  • profbee
    profbee Member Posts: 858
    edited July 2011

    Pawprint, I totally, happily accept all offers of prayers.  I didn't feel like you pushed anything on me.  I just can't turn to that for myself, but I do appreciate it.  Thank you.  I'm still pretty bummed out today.  Spent the morning in bed while Jack was at school--and I'm counting the minutes until his bedtime so I can just veg out.  

    I've decided to do the bilateral mastectomy.  I can't handle the fear of recurrence.  It is a huge commitment though.  So many procedures and so much to plan and think about.   Anyway, I don't want to go on and complain.  I like the idea of blaming the hormones.  I'm going to go with that.  :)  

    Thanks so much, friends.  I really needed ya here these past two days.  You helped me get some stuff out, and then tell it all to my hubby.  It really helped me.  Thanks. 

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  • scc218
    scc218 Member Posts: 163
    edited July 2011

    Profbee --  I just want to say I'm thinking of you and feel so bad that you're feeling so bad.  But it definitely IS normal to feel so bad.  This whole thing really sucks big time.  And I can't imagine having a child and going through this.  Don't ever feel like you're complaining too much -- this is the place to do it!  You have to vent and let those emotions out.  I just hope things get better for you.  Thinking of you......  (I did the bilateral mastectomy and have not regretted it at all.  Did NOT want to take the chance of getting it in the other breast.  I said, "Hack 'em both off and be done with it.")

    I start #1 Taxotere tomorrow, assuming my white count is high enough.  It has not been cooperating lately.  Hopefully today's blood draw has good numbers.  Not that I'm excited about starting a new regimen of "poison," but I'm really anxious to get all this crap behind me.  If there are no further delays (delays in chemo or hurricanes we have to evacuate for or whatever), I should be finished sometime in December.  And then on to the 5-year program of whatever.  Which I don't think I have insurance for.  So I'm not going to think about that right now.  One day at a time.

    And now it's time for bed.

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  • CarlaB76
    CarlaB76 Member Posts: 74
    edited July 2011

    Profbee, just sticking my head in a day late and a dollar short.  We have so many parallels.  My little guy is going to be 5 this month and I'm still thinking about if I can manage to do a party for him.  Raised Catholic and in the worst faith crisis ever right now.  When folks offer to pray for me, I thank them profusely because I can't manage to pray for myself.  I do meditate, which has brought me much calm and comfort, and xanax helps too, when my anxiety starts to skyrocket.  Hang in there.  Even though I only had a mastectomy on my left breast, I constantly question if I should have done the double.  When I turn at 3am, recurrance is the first thing that crosses my mind.  And I often need to grab my guided meditation to help talk myself down.  I also get angry, a lot.  I spit about if my son's diagnosis is not enough on our plate. Why do we need more, and not just more, but really crappy more.  I'm just sharing to let you know that you are not alone in how you feel and in trying to navigate this land mine ridden cancer terrain.  If you want me to PM you the meditation info, please let me know.

    On a bright note, my bestie who lives in Houston is passing through town, so I got a wonderful full day of visiting with her.  And my son's god-parents are coming to spend a week starting tomorrow.  These are the folks that we don't have to clean the house for! They are feeding my soul.  Today was a beautiful day, took a vacation day to spend with my bff.  Imagine, a day off of work that does not include a doctor's appointment, or a blood draw, or a freaking port access!  We walked outside, had popsicles, ate dinner, and lunch, and just enjoyed eachother.

    Since it is just past midnight here, I guess I can say that I go back to the healing throne (TM Merilee?) tomorrow to start up my 12 weeks of taxol. I've felt so good this past couple days (went a little longer than 3 weeks to start T) and oh how I'm dreading getting back on the throne again.

    Be well ladies...peace and light.

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Good luck to all of you in the  throne today. For those of you considering a double MX. I have not regreted mine for a minute. Bonus: no more bra!

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  • pawprintgirl24
    pawprintgirl24 Member Posts: 173
    edited July 2011

    just love you guys!! Kiss i just needed my smilies this morning since i didn't take anything last night to help me sleep so when 2 rolled around it was to late and i have been up since then and now i am getting ready for my shot and off to work for a few hours!my steriods kept me up and the hot flashes!! my duagter can't get too old and i can't get cool enough and its only the begining of july here we have hot humid weather til august and sometimes into sept with the 95+ degrees everydaythat is my BIGGEST complaint so far that and no food tasting right for 2 weeks!!! ugh!!!!

    have agreat day my warrior women!!!!Smile

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  • artiecat
    artiecat Member Posts: 257
    edited July 2011

    #5 TAC for me today!!!

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  • pawprintgirl24
    pawprintgirl24 Member Posts: 173
    edited July 2011

    we are just checking them off one by one!!! how many do you have to do artiecat??

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Articat- You go girl!

    Pawprint- The mist feature on the hose nozzle is very nice to play with Has helped me cool off many times. Stay cool

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  • Sudzinvermont
    Sudzinvermont Member Posts: 70
    edited July 2011

    Hi all

    My platelets were too low again yesterday, so I only got part of my chemo. I'll go back next Tuesday and if my blood work is good we'll continue on. Either way I'm at least another week behind and feeling a little frustrated and sad.

    I seem to have misplaced my "susie sunshine" attitude today, so if you happen to see it in your travels... send it along...I don't do "debbie downer" very well. 

    Sue 

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011
    View ImageJust for you Suds
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  • scc218
    scc218 Member Posts: 163
    edited July 2011

    #1 Taxotere today went smoothly.  The only thing that was a real drag was that I had to see the onco first, and my appointment was at 10:00; he finally came in the room at 11:35!  I was a tad grouchy by then, but he's a likable guy, and everything went okay. 

    Sudz -- sorry to hear about the low platelets and the sadness and frustration.  I can so totally relate to your pain (as I know we all can), and I hope it gets better soon. 

    Thinking of you all......and hope things are going well.

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  • profbee
    profbee Member Posts: 858
    edited July 2011

    Blame the hormones!  :)  I'm feeling better today.  Sudz, it must be your turn for the Debbie Downers.  I'm sorry.  (Meanwhile, "Suds" is what my older brother called me when I was a baby b/c I barely had any hair and what was there was fine and felt like suds--I guess I'll be like that soon again!)

    Try to get some extra sleep--and watch a movie you love.  (Whenever I don't feel well I stick in one of the Harry Potter movies.  It's just comforting to me.)

    Scc--I'd be SO angry if a doc was an hour and a half late!  Oh my gosh.  I don't think I would have stayed that long--but then, I've got a 2 hour drive to the place and babysitters watching my kid at home so I'm super time conscious when I'm at the docs.  Good for you for rolling with it.  

    I hope everyone has a good night tonight!  Hubby doesn't teach tonight, so I can take 2 Ativan and SLEEP!  :) 

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  • RangerMom
    RangerMom Member Posts: 604
    edited July 2011

    Hi All, just checking in quickly to let you know I spent last night in the ER because of possible clot in my lungs. They didn't find any on the CT scan but my left arm is darker than my right, I had neck pain again above my tubing last week (it went away so I thought it was okay) in my jugular and I've got this chest pressure and hacking cough. they are just going to watch me over the next few days. I have Taxol #2 tomorrow, 2 more to go after than and I'm done with this phase of the treatment plan. I'm glad in a way they didn't find any more clots but wish my chest didn't hurt and I didn't have this cough. 

    Profbee - Keep a mantra in your head and use it whenever you get scared...I will be cured or I am on my way to perfect health or I know my body and mind are working together to heal me of all cancer. But also remember, never feel like you are complaining too much on here. This is our safe haven to complain and talk over and over if need be about how scared we are or how sick we are or how tired we are. That's what we are here for.  Also - ask for more help from the In-laws or close family. They want to help but don't always know how. Its very humbling to ask, I know because I had to do that at work and say that I couldn't handle all my workload. Some of its been divided between my coworkers and some of it from others out in the field offices. It was so hard to do for me but now I'm so thankful I did.

    Congrats to all who got another treatment done already! We ARE warrior women. 

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  • Sudzinvermont
    Sudzinvermont Member Posts: 70
    edited July 2011

    Thanks for the Sunshine Merilee, and thanks to everyone for the kind words.

    I am much better today. I got a great nights sleep and am feeling fine. I keep saying i'm not having any noticeable menopausal symptoms ...but judging by my mood swings yesterday I think the evidence is in and quite convincing.

    Profbee...my "Sudz" comes from my love of beer and/or Soap operas...haha...or both at the same time! Laughing

    I hope you all have a great day! It's beautiful here today and I'm reminded how lucky I am to live in such a beautiful place.

    Sue

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  • artiecat
    artiecat Member Posts: 257
    edited July 2011

    Merilee, that sunshine is a boost for all of us!

     So - I had #5 of 6 yesterday.  All was well until about 10 minutes from the end of taxotere - I usddenly went very cold and was shivering so hard my teeth were chattering...after being wrapped in two blankets and a heating pad they gave me an infusion of benadryl and then a shot of demerol.  So today I have the benadryl fog.  First time I have had a reaction!

    Sudz - my daughter ilves north of Burlington, works in Essex.

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Articat

    Hugging you with warm fuzzy blankies and healing light. Almost there girlfriend, hang on.

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  • pawprintgirl24
    pawprintgirl24 Member Posts: 173
    edited July 2011

    ranger mom we have got to keep you out of the hospital from those clots!!hope all is better..

    yes artiecat warm thoughts!! one more to go for me too!! now for lunch is home made veg soup and grill cheese... it taste ok and it should be pretty good for me but this taste thing is kicking way too soon and lsting longer!! sucks bad!!! Frown

    and i am going to do the 5k run/walk race for susan g komen in  oct. but our team needs a name any help?? i would love to see what y'all could come up with!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    I'm back after sinking out of sight for a while. Things have been rough here on multiple counts, but I am making positive and assertive changes.

    Chemo-wise, I found out my platelets were in the cellar yesterday (should be 155-150, but they were in the 50's). I ordered papaya leaf -- that is supposed to help.

    You women with low white counts, get CORIOLIS mushroom. It's pricey, but it absolutely works. My other numbers all look like cr*p, but my white count is awesome, thanks to coriolis. (It's standardized and used instead of Neulasta in Japan, for nearly all chemo patients. Look it up - it's called PSK)

    Part of the reason I vanished is that I had a hard experience with the end of the February mastectomy board (GeocacheLinda and others were on there, too) and this was starting to remind me of it. We supported each other as we prepared for our surgeries and as we came home to heal, but eventually everyone "graduated" and it was so hard sitting there crying while so many women rejoiced over their clean margins and zero lymph node involvement.

    My own outcome was just the opposite - such bad lymph nodes the doctors automatically assumed I was probably already Stage IV. (KiwiMom and Linda and Suzy and Artie can probably relate.)

    So I've been dreading the same dynamic here. Like I am off on the sidelines while everyone comes down the home stretch, since I am not even 1/6 of the way through my own hellacious chemo journey.

    I don' t mean to whine, and believe me, I am happy for you gals. I am especially glad that so many of you found your tumors in Stages 1 or 2. Please never take that blessing for granted.

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Windlass- that is the most amazing piece of honesty I have seen. Thank you for being brave enough to say it. Please tell us how we can best support you, because ( and I think I can speak for everyone) we all want to. What would be helpful? By the way I want to say, I am so glad to see you back here. You have been on my mind.

    I know you have a long road ahead of you. Have you thought about what you are going to do when you are all done?  It will be April right? By the way what part of the country are you in?

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