Starting Chemo in April 2014

Options
1525355575895

Comments

  • nancybel
    nancybel Member Posts: 81
    edited June 2014

    Congratulations Nana!! Here's hoping for minimal SE for your final round.

  • MomMom
    MomMom Member Posts: 523
    edited June 2014

    Longisland - Hysterical - love it!!  Lol!!

    Linda - Fantastic news!

    Nana - Big congrats to you!!!

  • linda505
    linda505 Member Posts: 847
    edited June 2014

    Longisland - Love it!!!!   Strange how our chemo brains work and where we now find humor and irony.

  • SharonDe
    SharonDe Member Posts: 222
    edited June 2014

    I was thinking along similar lines, Linda -  It helps us stay sane.

    Loved your pic, Longisland.

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    lol... Love it Longisland

    Nana - congrats!  Beautiful picture in so many ways! 

    Football - yes, I am having the sweaty head,  especially at the back of my head.  

    Just had #3 of my weekly Taxols - so far I am still doing well.  Some bone pain,  muscle aches , and occasional burning in hands and feet.  Chemo mouth continues but I still feel so much better than on AC.  Night sweats have come out of nowhere and I can t sleep, Ativan doesn't seem to make a difference.   

    Had one of those nights last night where I realized that nothing is guaranteed and that I REALLY want another baby, but it doesn't look great ( fertility specialist said that we had secondary infertility prior to chemo so I think our chances are slim). Woke hubby up with my sobbing at 4 am.  This disease just takes so much.  And sometimes I get tired of the brave face.  I should be so grateful that we have a beautiful sweet 3 year old, and great church,  family,  and friends. And I am.  But I miss my breasts and the possibility of breastfeeding if by some miracle we can have more children, I miss when I could lay down or hug someone without pain,  I miss work, the gym, my hair, nipples, etc.  I miss fitting my pants...lol. The lymphedema scares me,  and how does one properly scrub in with a lymphedema sleeve when I can go back to work.   Not sure I am ready for a desk job away from the patients and families I love but there might not be an option.  Yuck.  One day at a time right? Thanks for letting me vent, you ladies rock!  I have so many people who love and support me.   It's just such a huge adjustment.  I have to get away from the TV.  Hair commercial, followed by pregnancy test, then weight loss commercial!  I will get through this and learn to love my new life, even if it looks different than what I wanted! 

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    image

    image

    image

    image

    But here's something happy... the new to us 1971 vintage boler... can't wait for it to stop raining and get to the lake!!

    image

    They nickname boler's up here... ours is the batmobile...lol.

  • LovebeingNana
    LovebeingNana Member Posts: 134
    edited June 2014

    Oh Clarn - in many ways I could have written much of what you wrote. It is all so hard and everything else that isn't usually hard is hard on top of all of this. But you know I think we need to allow ourselves to grieve. I know I am in the process of it and for me that means good days (or sometimes only 1/2  days) and then times when I just need to sob. I grieve the changes brought about by surgery and by chemo and I grieve the old "ignorance is bliss" before I was confronted with my own mortality. But I am grateful for so many things too. It has really helped me to write it out in a blog I started when this first began. It is real and transparent as I have walked through this and I know it is ok to feel what you feel and learn what you can from it. I think you are doing a great job.

    http://missysunexpectedjourney-com.webs.com/updates

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    Nana that is a wonderful picture with sign!

    Clarrn, You mailed the losses from this STUPID cancer, it was soothing to read that entry. And really sad. I had a hard time after menopUse, accepting that I really could not have another baby. Having cancer while young is brutally unfair.

    Boler, on the other hand is exactly the kind of antidote needed! An inexpensive way to travel in style and comfort. You are setting up the possibility for some wonderful days on the road and in the campgrounds. 

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    bravo nana!!!  

    LongIsland- just hysterical!!

    So funny. My sassy head designs for bald women are taking on a life of their own. Some drag queens are using them as body art and a pregnant nurse in my PS office used one one her belly for a photo shoot!

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    clarrn/ love the interior!  It really looks inviting!

    I just flew for the first time since November. I normally travel internationally for business so I am well seasoned. Today was Orlando to Denver.  I was a little nervous about my stamina but I went. Put on my little compression sleeve and even asked someone to help me put my bag in the overhead.  Done people took a double take at my excruciating short hair.  Bad weather forced us to pass over Denver and in Amarillo.  Checked into hotel late and dinner was a bag of veggie straws.  Ahh the glamorous life.  I'm exhausted but All in all it felt good to be traveling and beats the shit out of sitting in a barco lounger with chemo!!  Wish me luck. I'm interviewing for a new job within my company   I lost my old job when I was DX. 

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Great picture, Nana!!

    Clarn: you're definitely not alone in your feelings. This whole thing has so many ups and downs. On one hand, I know I should be grateful for what I don't have to endure, but on the other hand, I'm still struggling. And like many I've read about, I'm starting to get toward the end of chemo then I start to think of what's next. How do you live your life to the fullest when you have this monster lurking in the back of your head, relapse? I guess it's part of it - getting through the emotion. I think lately the emotion has become almost as difficult as the treatment, for me at least. :) Best of luck - everything will work out for you one way or another.

  • lilyrose53
    lilyrose53 Member Posts: 216
    edited June 2014

    Nana-Love the sign!  Great to hear you are finished! 

    Footballnut-I get that clammy feeling on the back of my head too.  I don't like that sweaty feeling it bugs me.

    Clarrn-I love your Batmobile!  It is SO cute!  Have tons of fun at the lake!  We have a living quarters horse trailer and I always loved going with my DH to endurance rides.  I do so enjoy camping with the horses.  I hope I will be able to do that again this winter.

    Had round 2 of Taxol this morning.  Ten more to go, ugh.  It is definitely easier on me than that awful dose dense A/C.  But the big D just about wiped me out today.  Slept between bouts all afternoon.  Now the darn steroids have kicked in and I know I will be up all night.  Got an antibiotic for the UTI today.  My MO wants me to have another urinalysis done and get it cultured to see what's going on.  Upside is my phlebitis is finally clearing up.  U/S shows no blood flow in that section of vein though.  Oh well.  My hair is trying to grow back.  It is a real fine fuzz.  I don't like it, but I am going to wait and see what it looks like.  I can't figure out the color...it doesn't look the same to me...hmmm.
    Wishing you all well,  hugs, lilyrose

  • linda505
    linda505 Member Posts: 847
    edited June 2014

    Clarn - we all need to find our new normal.  It sucks and we have every right to mourn our loss of ourselves.  That is what is feels like sometimes to me, that a big part of me is gone.   My biggest emotional issues right now revolve around not knowing what to do about work.   I have a job that I loved but has gotten very stressful for the last 3 years due to the economy and has been a challenge just to keep the company going.   I don't think I can deal with that stress anymore but I  need a job as I need to be able to pay for insurance and household costs.   My hubby doesn't make enough for me not to work - I am the main bread winner.  Prior to BC the old me wouldn't even consider not working where I am - I have been there for 27 years ughh...

    Don't give up hope on a child Clarn - there is always that possibility and I hope you have a miracle in that area.   NOW - I am totally jealous of your Boler - I have seen them before online - where on earth did you find it????   My hubby and I want a camper and that is just as cute as can be!!

  • Mompv
    Mompv Member Posts: 110
    edited June 2014

    fluids? Water tastes yucky and too much makes my stomach feel bloated and almost nauseous . Ice chips? Juices? Fruit bars? All good alternatives? Thrush didn't help. Last Thursday was my first AC. Anyone else notice hair tingling almost right away? Ok one more. I have the option of giving myself the neulasta shot at home. I would save the 39 min ride and parking plus the one copay. It would only cost me 30.00 to do it myself as opposed to 65.00 plus time ! 

    You all have been so awesome!!!!

    Thank you 

  • SharonDe
    SharonDe Member Posts: 222
    edited June 2014

    Clarrn - your bat mobile is sweet.  Looks perfect for getaway time.

    Footballnut - I woke up with a clammy head.  I still have quite a bit of hair on the back of my head which is also weird.

    Lilyrose - good luck clearing up your UTI.

    Mompv - I've never given myself a shot, but would learn to do so for the savings in $ and miles. Or maybe you have a neighbor or friend who can help you?

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    Nana - CoNgRatUlaTiOnSSSS!!!

    Clarn - You will make a lot of memories in your new Batmobile.  I have always wanted an Air Stream.  At my age it won't happen unless someone turns it into a home for the aging and parks it in their backyard.

    We have all lost so much.  I wrote this poem right after I had my dmx and DIEP..  It expresses the losses I have felt and have to work through in unguarded moments -

     

    Do you know me?

    Come here you say. Come across the expanse of sheet that never gets dirty and share my blanket.

    Come into my arms and let me hold you.

    Who are you asking? Are you asking me? I don’t recognize me when I look in the mirror, when I dress, when I touch myself. I bind myself with the veil that keeps it all in. All the fear. All the unknown. All the changes I am getting to know.

    Will you know that it is me? Will you recognize the me that is part of the changes? The me that never changes? The me that you have known so intimately? Can you tell me if I am still there?

    When I make that journey across the white expanse and feel the familiar engulf the new me I begin to feel a little of the old me. The tears come and I wish to know for you, am I still there?


     

  • Sunshine36
    Sunshine36 Member Posts: 88
    edited June 2014

    Clarnn - im sending you the biggest hug right now. ((((( xXxX )))) 

    I am SO happy to at least know that im not alone in this wierd, bittersweet, approaching the end of chemo sadness. A few months ago I was so excited at all the things id be feeling approaching my last round, but now, knowing only 2 rounds left (then my bilateral m 8/20) has me scared sh*tless.  Did I do enough? Wil it really be all gone ? Will I ever feel normal? What if it comes back ? How do i stay positive and enjoy life if im worrying every moment of reoccurrurance :( I know the first few years are scariest and most worrisome, im trying to find the balance of being realistic and being optimistic.  A cancer diagnosis pulls the rug from underneath us, and I fear ill never get my "innocence/ignorance is bliss" back.

    Anyone have any advice on getting that aweful little voice out of your head? I really want to celebrate when my chemo is and my surgery is done - true celebration, not a smile hiding fear!!!!! 

    I've decided to start working out again too, in hopes to shake this funk a bit.  Ive alwayd been a runner and very active person, cancer and chemo really took my mojo away, but I think some summer sweat endorphins should help! My MO said I could completley start running again as long as im sensible and safe, but I may just try some good ole' power walks in the evenings and wknd mornings while the hubs and kids are snoozing :-)

    Ps sorry for the mini vent. This last round really put me down in the dumps!!!!!

    Ps - hoping everyone an easy se-free enjoyable day! 

    Xoxo

    jen 

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    Thanks everyone for all the kind words.   It helps to know that you all understand.  

    The boler we found in Edmonton,  they were made in Canada from 1970 to the early 80s before they sold the design to Scamp in Michigan.  Scamp is operating again but I like the old ones.   They remain popular bc they only weigh 900 lbs and just so cute.   But they are 3 times what they cost when they were new!  Lol.

  • ColdInCanada
    ColdInCanada Member Posts: 95
    edited June 2014

    Good Morning Ladies! We are Day-I've-completely-lost-count of RAIN here in Calgary. Last year at this time, we had so much rain that it flooded a significant portion of the city and small towns surrounding, so I am praying it lets up soon. 

    clarrn - I have Boler Envy. I do. Your little Batmobile has some serious AWESOME going on. 

    mompv - I give myself the Neulasta shot every round, and it turns out it's not a big deal. My oncology nurse gave me visual and written instructions, and then my mother-in-law (who is a retired nurse) talked me through the first one. Honestly? My husband has a harder time with me doing it than I do. Even sitting down and NOT WATCHING, he gets light-headed. Which is pretty hilarious. :D So, yes, I say save yourself the time and the money. And regarding fluids - have you tried freezing fruit juices in cubes and then blending them into ice chips to suck on? I also spend quite a few days each round just sucking on regular ice chips, but the juice chips make a nice change. :)

    Aw Ladies, we have lost so much, haven't we? I try to stay out of That Place as much as possible, but sometimes it just creeps up on you, right? Here are two ways I pull myself out of the I've Lost So Much Zone: 1). Find the humour in every situation. There is always a Ridiculous that will make you smile. And if you're laughing, the Bad doesn't seem quite so bad. 2). There are WORSE things in this world than what is happening to me. This doesn't lessen what is happening to me; it just puts it into perspective, like "Whew! At least I'm not THAT GUY". Examples? One of my children could be going through this instead of me. Or one of the many Monsters in this world could have targeted one of my babies and hurt them in UNSPEAKABLE ways. Oh yeah, I'll take breast cancer over THOSE options ANY DAY. 

    The thing is, what has happened to me, to US, really, really sucks. It DOES. And we NEED to mourn everything we've lost. But this morning I woke up and I thought "WOW. I am not the same person I was BEFORE." You see, Before, I had reached a plateau in my life. I wasn't UNHAPPY, but I wasn't HAPPY either. I was restless. And I remember getting down on my knees and asking God to "snap me out of it." And He DID. In a big way. And now, I feel Better than Before. I feel I am now somehow MORE. Refined through the Fire. A better person, no longer restless, LIGHTER, and HAPPY. As someone else commented a few pages back "the good days seem SO GOOD". I take nothing for granted. I smile more, laugh more, hug my family more, tell them I LOVE THEM several times a day. Life is fleeting, and I want to enjoy every single second I have left (which is going to make for a very busy next-40-years!) 

    Do I wish it had happened in a different way? OF COURSE. I see Round 5 looming (just one week away) and I want to CRY. And, yeah, I am SO AFRAID that cancer will come sneaking back into my life just when I think I've beaten it. But that fear, while normal and completely fair, will NOT rule my life. Because then Cancer gets the power. And NOPE, not gonna happen. I have done everything I can to be cancer-free, and the rest I have to leave up to God. Faith plays a big role here, and mine will not be shaken. This is MY CHOICE. And it means, I WIN. :)

    Something Ridiculous to take with you: I had a right-side mastectomy back in February, and I still haven't been fitted for a foob. So a wonderful friend of mine KNITTED ME ONE. I opened up the gift bag, pulled out this ball of knitting and THEN? I realized what it was, and we had a huge LAUGH. Seriously, it's AWESOME, and super comfortable, and I giggle every time I wear it. I'll have to post a picture of it. BEST. GIFT. EVER. :D

    Hugs to you all!

  • MomMom
    MomMom Member Posts: 523
    edited June 2014

    Coldin Canada, I absolutely love your attitude and philosophy about this whole cancer thing. As one of my favorite punch lines says, with all this sh##, there's gotta be a pony in there somewhere! You are so right.  The good days are re so much more meaningful now.   

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    Cold, yes I think the constant reason is playing with my mood too!  Thanks for the uplifting post, just the encouragement I needed.  Much better me than my daughter, and I pray it never has to be her in these shoes.

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    oops... constant rain

  • linda505
    linda505 Member Posts: 847
    edited June 2014

    Mompv - any fluid count except ones with caffiene is what the nurses told me - so drink whatever you can - I mix flavored vit water with my water sometimes 1/2 and 1/2 and that seems to help.  Lemon squeezed into my water helps.  Ice chips would be fine.  Anyway you can get fluids is important - also if you think you are dehydrated at all call your MO and see if you can get fluids.  I got a fill up on Friday and even though I was and am drinking alot I think it REALLY helped with the SE's this round. 

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Cold - What you've written has hit the nail on the head. Thank you so much for articulating it. I've been going around and around in my head about this: It sucks. It could be worse. What if?  It's very difficult to get through the emotional process, I'm finding. 

    Having you ladies to chat with has made all the difference. I appreciate your perspectives so so so much.

    Thank you.

    Went back to work yesterday, now day two. It's a lot harder than I expected. Not the work, that's the easy part, I think. The emotions. The fatigue. The wig. All. Day. Long. All of these things. But I'm going to get through it. One day at a time. And for those of you who have been doing this throughout - wow - I'm in awe.

  • SharonDe
    SharonDe Member Posts: 222
    edited June 2014

    You ladies are all amazing, and have an eloquent and honest way of expressing yourselves.

    LovebeingNana - you are a talented writer, as shown by your description of this experience in your blog.

    Brigadoon - beautiful and haunting poem.

    My heart aches for all of us dealing with this, for those with young children, for those with jobs to worry about, and for those with other problems piled on top of dealing with breast cancer.  At the same time, I have faith we will deal ... I don't know if it's correct to call us survivors, fighters, or warriors ... I do know we are all stronger for having come together to share our experience.  

  • mmtagirl
    mmtagirl Member Posts: 509
    edited June 2014

    I know I have been Mia.  Busy time, but, Have been reading everyone's posts

    Brigadoon, your poem was so perfectly spot on.   Brought me to tears.  Eloquently expressed.

  • Mompv
    Mompv Member Posts: 110
    edited June 2014

    Thank you Coldincanada you really said it all quite well. I am gratful it's me and not my beautiful girls! Yes we are being refined by Fire! He will NEVER leave us!!!! 

    Good tip on the fruit chips. I made some pomegranate juice ones to take to work today!

    On another plus side the thrush is almost gone! 

    I still havent decided on the shot at home... Would be nice to be home if I am feeling poorly but if I am feeling poorly can I do it myself! Sheesh!!!!

    Good day everyone!

  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    good morning all!

    Pretty challenging week with tummy issues after third round of chemo the week before. Ugh! Interestingly I've been through similar bouts prior to diagnosis as everything tends to hit my stomach

    Now I'm left with an abdomen that still feels a bit off - sensitive I guess - and a bit of discomfort in my lower back. When I sit back it almost feels like I'm pressing against concrete

    My tongue has gone from dry to cardboard to a burning sensation but not too bad

    I think that my eyebrows and arm hair is starting to fall out but hair grows on my knees! Too funny !

    Hubby and I are going to orillia this weekend. Orillia is approx 2 hours north of toronto and is considered the beginning of "cottage country". The drive will suck but there's a nice lake up there and I miss the water!!  Going to see the comedian that plays mike in mike and Molly at casino Rama. Hoping for some good laughs and weather. Maybe I'll take a dip in the lake !

    Have a great day all!!!

  • SharonDe
    SharonDe Member Posts: 222
    edited June 2014

    Getting out and about sounds like a good idea.

    Anybody deal with ingrown hairs / infected follicles in the nether region?  I don't have much hair there to begin with, but my Brazilian has been slow to come.  Now this to deal with?  Will try hot compresses - I really don't want to have to make a Doctor's appointment for this.

  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    sorry to hear Sharon!  I have had no issues with that

    I find it funny how my hair has fallen out. Still wisps on my head and " done there" as my mom would say. Lol

    The hair growing on my knees is funny and I still have hair under my arms. Nothing growing on my face

    I'm sure that my eyelashes are starting to go because I often feel like there's something in my eye and when I give a gentle tug on the eyelash in the vicinity, a bunch come out

    Can't wait to see what grows back!!

Categories