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Life does not end with a stage IV diagnosis (really!)

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Comments

  • moderators
    moderators Posts: 8,739
    edited February 2015

    ((((((((freebird)))))) We're here for you!


  • shutterbug73
    shutterbug73 Member Posts: 284
    edited February 2015

    I'm so sorry to hear that Freebird. We are here to listen whenever you need is. I hope they find a good combo for you that will kill the Mets and drop the tumor marker numbers. Keeping you in my thoughts

  • Nel
    Nel Member Posts: 597
    edited February 2015


    Freebird - gentle hugs coming your way

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Life to me does feel like it is ending with this dx....one thing after another...is happening to me...and to beat all ...i get a disgusting email from my oldest daughter in regards of how she feels about my illness...she is sorry that I'm ill...but anything that goes along with it...she doesn't even care about...what i'm going through etc...history there...but I had to lash out and put a stop of her making me feel terrible about how she feels about her up bringing and life until she was 18...my other two children were there...they don't understand what she is even saying sometimes...they gave me permission due to my health and sanity to just let it and her go...and I had to...she has been toxic in my life since she has been an adult...and I don't need that now..when I am fighting for my life...and at this pt in time...I am fighting for my life since the calls i received this morning that the red demon is not working...I am just alone and scared more then i have ever been....OMG god please!!!

  • GatorGal
    GatorGal Member Posts: 750
    edited February 2015

    Freebird, I could be writing that about my daughter as well. I had to read your post aloud to my husband. Our story is the same. My two sons feel the same way your other daughter's feel ... Just let her go. It's like she was raised in a different house. I feel bad for you because i k ow how much pain I have felt. This is definitely something you don't need right now. I wish you peace. My daughter has made up a life that doesn't agree with what any of the rest of us remember and I'm just letting her dwell in."her" past while the rest of us moved on. Al-Anon helps me a great deals its letting go. I hope you can find a way to do that as well. Hugs, Glenna

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    Thank You Gatorgal...i thought i was crazy there for a minute... love ya Carla Peace out

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited February 2015

    Carla,

    I know you are going through a very rough and scary time. Families issues are often magnified andcome to a head under the stress of serious illness. Your daughter is an adult and you can only do so much. If you need to step away from her at this time, then that's what you have to do.

    As for this thread and it's title, I created it to give hope to those who are at a different point in their stage IV dx, not to make others feel bad. Just like bc overall, stage IV comes in many different varieties and just as we have threads for those who are struggling, it's equally important to have a thread for those who are having a different experience. This is thread,however, is not exclusive and I hope everyone feels free to post here and that we can give hope and support to those who are living a relatively normal life as well as those who aren't.

  • MusicLover
    MusicLover Member Posts: 777
    edited February 2015

    Freebird, It is strange how some adults(?) blame their parents for everything that they think is wrong with their lives. I hope that your daughter has a change of heart and has some loving words for you before it is too late, she will probably regret her actions and words forever if she doesn't.  Maybe her siblings could mention something like that to her but what's that expression, "You can take a horse to water but you can't make them drink."  (I have always wanted to tell you that you have the most beautiful smile, you really do).

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited February 2015

    Freebird so sorry..kids see what they wAnt dont let her take u away from the goal n that i assume 2 stay alive. If u feeL the need either say nothing or just tell her that 4 right now i am putting all my enrrgy toward my health, hopefully some day we will speak again but right now is not the time, i will let u know..peace..

    it is about u, take care of yourself..you deserve it. They always have something to say n to kick u when u r down is not cool.

  • freebird53
    freebird53 Member Posts: 141
    edited February 2015

    blondiex46: are you off treatment...your profile reads that you discontinued Halvalen 7/20/14 ...Why I am asking is I am starting Halvalen...just wondering what treatment you are on now...and how was Halvalen for you...Thank You Carla

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited February 2015

    Carla I'm so very sorry you are having such a rough time. I know the fear of which you speak. Suddenly I became unable to finish up the organizing I started and then left in a box in the middle of the basement floor. I am able to move better, so that box will be a major priority for me for tomorrow. I need to get my taxes done, and I need a will. I knew I needed these things before, but I procrastinated. Now the cancer is growing like crazy. Hopefully the radiation will slow it down, but boy oh boy, we sure aren't guaranteed a tomorrow. Scary stuff!

    I still say I have a trip I have to go on in the Spring. This past week, with all the issues (numb jaw that when no one could explain it led them to order a mri of my brain immediately, thinking I fractured the sacral bone but instead finding out how fast this is growing, has been pretty terrifying for me. Lots of women live a long time with Stage IV. I kind of thought I would be one of them, but not so much anymore.

    Take care all and enjoy every bit of life you get. I am falling asleep at the computer, so it is time to cuddle up in bed. I know I will not wasste tomorrow.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited February 2015

    Carla and dunesleeper,

    Pain, progression, and the constant question mark over our heads take their toll. As dune said, we should enjoy every bit of life we get. One thing I have learned is to enjoy the small stuff. Yes, the big trips and events are great and give us something to look forward to, but we live, mostly, with the everyday, ordinary things.

    I got my hair cut and the gray vanquished today. I always feel great with fresh color and a nice cut. Then, I went to my younger dd's house and jumped on her new trampoline. Yup, trampoline! DD and SIL gave each other a trampoline as a Valentine's gift. Then we ran some errands together (braving Costco on a Saturday). Afterwards, we went back to her house, ate some fruit, cheese and had a tiny bit of wine and watched the 40th SNL special. This is definitely the kind of thing that I love and what makes my life feel normal. After all, who knows what tomorrow might bring? Sleep well all.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited February 2015

    Free i made the decision to stop all chemo in july, so halavan was the last 1. It was like all the rest, i was sick 6 out of 7 days a week, qol (sorry 4 being blunt) sucked, so i decided to live the rest of my days doing what i wanted n that cancer n chemo would not control me anymore...no regrets 




  • Nel
    Nel Member Posts: 597
    edited February 2015

    Carla and dunesleeper,

    You are in my thoughts.  The eternal question mark over our heads certainly wears us down.  I agree with Caryn - the big trips and life events are great, but the little day to day things are what keeps me going.  Just my kids and I here for supper one night this week - very unusual, often a friend here.  They were setting the table, I was getting dinner and they were getting along!   I try to step back and take it in.

    Nel

  • GG27
    GG27 Member Posts: 1,308
    edited February 2015

    As others have said here, I am not going to let cancer rob me of one day more. When I was diagnosed that it had come back, I did the usual & slipped into a bit of a depression, woe is me, why me? frame of mind. But after doing some reading & coming here & talking to others on BCO, I have taken back my life. It's a changed life no doubt, but in a way it has made me appreciate the little things in life.

    Yes, I plan for big trips, holidays etc, but more than that, the little things like sharing a glass of wine with DH while cooking dinner. We talk like we never have before. We are closer than we have been in years. I can sit in the garden & just watch the birds & be happy in the moment, not constantly looking to fill time or conversation. Every time I need bloodwork or an infusion or an onco visit I have to travel, so instead of looking at it as an appt, we look at it as an opportunity to go somewhere, perhaps a nice lunch out or a drive to somewhere we've never been before.

    I was able to end friendships that were hanging on by a thread because I need only good friends in my life at this point. And the friendships I have now are the strongest, tho fewer of them.

    I know that everyone's life is different and not everyone has the same opportunities, but I feel that outlook is an important part of stage IV. I'm not saying you have to be happy all the time, because lets face it cancer sucks, especially metastatic cancer.... but I have to go thru all of this & for me, it's easier if I go thru it with a glass half full outlook.

    Hugs to everyone who needs one today because I can always use one back. Cheers, Dee

  • moderators
    moderators Posts: 8,739
    edited February 2015

    And HUGS to each and every one of you from us!!Smile

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited February 2015

    Beautifully, stated, Dee

  • shutterbug73
    shutterbug73 Member Posts: 284
    edited February 2015

    Hugs to you Dee (and everyone else). Thank you for the reminders. I had been on an even keel for awhile, but slipped into a deep sadness the past few weeks (not unusual for me in Feb and Mar). I need to get back to counting my blessings, of which there are so many.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited February 2015

    D so beautifully said

  • GG27
    GG27 Member Posts: 1,308
    edited February 2015

    Thanks everyone. I wasn't having a great day thinking about my poor old cat that died a couple of years ago & how much I needed her. But I came across this thread again & just wrote from the heart & said what I really feel. The community here means so much to me & has helped me immensely. Hugs back, Cheers, Dee

  • Nel
    Nel Member Posts: 597
    edited February 2015

    Dee - thank you   It is the little things!


     

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited February 2015

    About two days ago, I developed a very, very itchy rash on my right knee. It was red, bumpy and shiny. Arnica gel temporarily helped the itching but my brain started screaming. "Skin mets!" I tried to think of things that might have caused a rash and resigned myself to seeing the doctor if it didn't clear up over the weekend. I tried to push down the rising panic. Well, this morning, while not totally awake, I remembered that I had been using OTC pain patches on that knee earlier in the week. Duh! Why couldn't my feeble brain just go to adhesive irritation before it jumped to skin mets

  • Nel
    Nel Member Posts: 597
    edited February 2015


    Hydranne  Yeah for the great response

    exbrnxgrl - always we go to the worst case  

    Happy for good news for both of you

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited February 2015

    Hydranne, sorry to hear of your recent diagnosis. I hope you are finding support and encouragement on this site. It is good to hear that you are responding to treatment; always a good sign!

    exbrnxgrl, so glad you figured out the source of your rash. I have a similar story, and I hope you don't mind my sharing just a tiny bit of "too much information". I woke up in the morning several months ago and went to the bathroom, "number 2". When I got up to flush the toilet, I was shocked to notice the poop was all green. My heart immediately sunk. 'Oh, no', I thought, 'liver mets'. I was nauseated all morning long thinking about it. Then I wondered if I'd eaten anything green the day before but ruled that out. But guess what? Later that day I remembered I had eaten half a jar of green olives the night before! I was just so shook up at first, it took awhile before my mind settled down so I could recall what I'd eaten. I guess part of us is always vigilant, steeling ourselves for the worst. It's always a relief when there's a simple, non-cancer related explanation.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2015

    Ha! You haven't lived until you have had green poop!

  • shutterbug73
    shutterbug73 Member Posts: 284
    edited February 2015

    So glad what you were all worrying about turned out to be nothing. I had this experience recently too. Last month I dropped the chemo drug from my regimen and was a bit nervous that the cancer wouldn't respond to the targeted therapy only. I've been virtually pain free with only OTC pain reliever for months. Last week I started to have back pain again. I thought "well, this is it...the bone mets are back." Then on Wednesday morning I noticed I had forgotten to put the Aleve in my morning pill holder. Three days without pain meds! I'm feeling much better now.

    I also had an incident where I thought I was seeing things out of the corner of my eye. Almost like flashes of light. My heart jumped. Brain mets? No, white cat hair stuckon my eyelashes.

  • GatorGal
    GatorGal Member Posts: 750
    edited March 2015

    I got a good laugh out of the previous posts. I'm sure many have experienced that temporary panic. Would make a good thread! LOL!glad you all figured out these instances were not Cancer-related!!

  • dunesleeper
    dunesleeper Member Posts: 1,305
    edited March 2015

    My mind naturally jumps directly to spread of cancer, and the experience is not funny. However, reading your stories cracked me up. Maybe next time we have a scare it will be tempered with knowledge of how many other explanations there are.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,316
    edited March 2015

    dune,

    Well, it's only funny when you discover that there is a completely normal, and non cancer, explanation for it. My rash, and the small area in which it appeared, should have made it obvious to me that it was not cancer related. I felt like an idiot, and an alarmist, when I figured it out :) This is rather unlike me, so I'm glad I could laugh at myself in the end.

  • GatorGal
    GatorGal Member Posts: 750
    edited March 2015

    right, Karen, I didn't mean to trivialize the fear .. I've had it many times myself. It certainly isn't funny when you're going through it.

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