Trying so hard

camul
camul Member Posts: 2,537
in Breast Cancer #1

to stay positive and out of bed.  I have my last chemo on Friday, and part of me is glad and part is really scared.  I will only be on pain meds, thyroid meds, vitamins and Evista (another estrogen blocker).  It will be the first time in almost 3 years that I will not actively be fighting the cancer with some kind of treatment.

The Adriamycin was to try and slow the growth and help control the bone pain.  The bone pain has increased as well as pressure around my ribs and chest. Only the bone scan/ct scan will show if it has done anything.  The onco suggested we finish the last 4 treatments and stop, which is Friday.  Noticed a steady increase in the pain after stopping Herceptin. Xgeva was stopped bcuz bones were softening (necrotic activity?). 

In the last 6 - 8 weeks, sleep way too much.  If I lay down  I fall asleep for at least 6 or more hours, that is if I even have the energy to stay up at all.  I am hoping this is mostly from the chemo, yet I am beginning to think it is from all of it, the pain, the chemo, the cancer.  Yesterday and today, I have forced myself to stay up.  I won't even go in my room or lay on the couch, and my bones are just throbbing.  I am so hoping that after being off chemo for a few weeks that my stamina will increase. I try to walk some during the day, clean, and do laundry.  A trip to the grocery store is like a major feat! 

I am not giving up, but I think my body is giving out!  For the first time, I feel scared, that this is the best I will ever be and it seems like each day is getting harder and harder......  I can still get around and do things, it is just that the pain is always there and I am totally worn out.  I have dilauded for breakthrough pain, but that really knocks me out and when it wears off, I am right back where it started. 

My numbers are ok, stay between 1.2 and 2.4.  Since being on this chemo have had the kidney infection, and headaches. 

Sorry, just needed to vent to someone who understands.  I am trying to make it to my support group at 530p.  I enjoy going and it is really good for me, just so much effort to get there! 

Carol

Comments

  • blazintrails
    blazintrails Member Posts: 52
    #2
    I understand about being

    I understand about being exhausted.  I too find myself too tired to do my normal chores and have been fighting sleep but sleep wins every time.  My nap times are around 2 hours.

    I tried to go back to work but I'm too tired to.  See I work taking care of horses in the AM moring, work in afternoon, home chores, take care of horses in evening, making dinner and I'm wiped out!

  • SIROD
    SIROD Member Posts: 2,194 Member
    #3
    Raising the Dosage?

    Can your doctor up the dosage of your pain medication?  You should not have to fight pain.  

    I think a nap or just laying down is good for your bones.  I changes the position and the fact that you are staying in the same position might be causing you more pain.

    I am so sorry where you are finding yourself in now.   I wish that I had wise words to pass on to you but I don't.   Do hope you will call your doctor about giving you a higher dosage.

    Best,

    Doris

  • Josie21
    Josie21 Member Posts: 382 Member
    #4
    Hi Carol,

    Hi Carol,

    I am so sorry you are feeling so tired.  Reading your post makes me hate this disease even more (and I didn't think that was possible).  I wish I could say or do something to make you feel better.  You are in my thoughts and prayers.

    Hugs,

    Ginny

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #5
    Carol you really have had a

    Carol you really have had a lot to deal with.  More than I did sounds like.  The only thing I found was I could sleep forever and did after the chemo and it took months to get out of that need.  I felt my body wanted it and needed it.  I didn't get bone aches until after and eventually went away but I must admit some of the pain (I feel worstend by Tamoxifen) was due to arthritis in the high spine and shoulders.  Plus a bad hip since pregnancy is now kept in check by a chiropractor.  But I still had other pain which all got too much Making me feel 90.  But it did get better.  I have now switched to Armidex after Oncol using implants to kill the ovary function.  I am finding Armidex so far much better.  My severe, severe, severe flashes have suddenly stopped.  Yoga and Pilates stop me from seizing up, stopped drinking and changed diet to much more fibre.  Probably not what you want to hear but one month I felt yuk the next much better after I sorted what was what in my head And made the changes.  Please do what your body tells you and when you feel better you can gently get moving again then see if there are any problems which have not shown up yet, or just age stuff, or RA / Arthritis is showing itself etc. etc. with some luck it may all ease off or become much more tolerable.  Please keep messaging........

  • camul
    camul Member Posts: 2,537
    #6
    RozHopkins said:

    Carol you really have had a

    Carol you really have had a lot to deal with.  More than I did sounds like.  The only thing I found was I could sleep forever and did after the chemo and it took months to get out of that need.  I felt my body wanted it and needed it.  I didn't get bone aches until after and eventually went away but I must admit some of the pain (I feel worstend by Tamoxifen) was due to arthritis in the high spine and shoulders.  Plus a bad hip since pregnancy is now kept in check by a chiropractor.  But I still had other pain which all got too much Making me feel 90.  But it did get better.  I have now switched to Armidex after Oncol using implants to kill the ovary function.  I am finding Armidex so far much better.  My severe, severe, severe flashes have suddenly stopped.  Yoga and Pilates stop me from seizing up, stopped drinking and changed diet to much more fibre.  Probably not what you want to hear but one month I felt yuk the next much better after I sorted what was what in my head And made the changes.  Please do what your body tells you and when you feel better you can gently get moving again then see if there are any problems which have not shown up yet, or just age stuff, or RA / Arthritis is showing itself etc. etc. with some luck it may all ease off or become much more tolerable.  Please keep messaging........

    Thanks for the kind words and prayers.
    Nacy we upped the fentanyl patches to 37.5 injan/Feb. It helped then but no longer. I bought one of the jell pads for the bed and go from side to side to back. I was thinking being in bed was making it worse, but even the exercizes and additional walking are not doing much. The acupunctuist gave me the exercizes. The helped at first but not so much anymore.
    My boys told me to skip the last chemo and see if that helps the exhaustion, as it has not helped the pain, but I will leave that to the onco.
    AThinking the ric/chest tightness ay be fluid again around the lungs/ribs putting pressure on the tumors.
    This disease really sucks.
  • camul
    camul Member Posts: 2,537
    #7
    camul said:

    Thanks for the kind words and prayers.
    Nacy we upped the fentanyl patches to 37.5 injan/Feb. It helped then but no longer. I bought one of the jell pads for the bed and go from side to side to back. I was thinking being in bed was making it worse, but even the exercizes and additional walking are not doing much. The acupunctuist gave me the exercizes. The helped at first but not so much anymore.
    My boys told me to skip the last chemo and see if that helps the exhaustion, as it has not helped the pain, but I will leave that to the onco.
    AThinking the ric/chest tightness ay be fluid again around the lungs/ribs putting pressure on the tumors.
    This disease really sucks.

    btw
    Did not make it to group, it is downtown at rush hour and just thinking of sitting in traffic was stressing me out. There is always next week!
  • sea60
    sea60 Member Posts: 2,613
    #8
    camul said:

    btw
    Did not make it to group, it is downtown at rush hour and just thinking of sitting in traffic was stressing me out. There is always next week!

    Praying for you Nancy

    I have never regained stamina after Chemo. I hope and pray you begin to feel a bit more energy every day. Thinking of you and sending gentle hugs.

    Sylvia

  • lintx
    lintx Member Posts: 697
    #9
    camul said:

    btw
    Did not make it to group, it is downtown at rush hour and just thinking of sitting in traffic was stressing me out. There is always next week!

    Glad you didn't go to your group today, Carol

     

    You just sound too tired for much right now.  Maybe after the last chemo things will look up.  I wish for you no stress, but I think we all have it in our lives.  I'm thinking of you.  Hugs, LInda 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    lintx said:

    Glad you didn't go to your group today, Carol

     

    You just sound too tired for much right now.  Maybe after the last chemo things will look up.  I wish for you no stress, but I think we all have it in our lives.  I'm thinking of you.  Hugs, LInda 

    Oh, Carol, I wish I could make it better

    I just want to be able to say "do this and it will get better", but I don't know what to do.  I'm so sorry you're dealing with this sucky disease.  You've done a trememdous job staying positivie and fighting for such a long time. It's ok to be sad and scared, but being sad and scared (and in pain) must be really difficult.  It stands to reason that the chemo is contributing to some of this and I hope without it you will have relief.  I'm sedning lots of good mojo to you and yours.

    Suzanne

  • Treecy1106
    Treecy1106 Member Posts: 144 Member
    #11
    Hi Carol!!

    Well all I can say is....we all have been there in one way or another. Not that that comment should make you feel good but make you understand that this is just a time and place in your life's journey and it will pass.

    Life has a funny way of teaching us things. I was told to love my cancer...I thought the person who said this to me was nuts but through all the pain and agony whether physical or mental came a huge learning curve in my life.

    Always remember you will not always feel this way Scared and in pain.

    I have chosen to face things head on no matter what but I armed myself by eating more alkalizing foods and drinking water with a high PH level. I eat or drink more raw veggies and stay away from dairy and sugar.

    Sounds crazy but by me taking a stand on those things I walk into the oncologist office like a champ! 

    Bone pain is not fun, I had it....scared after treatment, I had it.....plus many other things.

    Wish all of us didnt have to go through any of this but these are all autoimmune diseases so believe it or not your goal and everyone elses here should be to build your immune system up real well so our bodies can fight off not only the cancer but the adverse effects left on our bodies from rads and chemo.

    Love your BC sista...(((HUGS)))

    Patrice

  • New Flower
    New Flower Member Posts: 4,294
    #12
    Treecy1106 said:

    Hi Carol!!

    Well all I can say is....we all have been there in one way or another. Not that that comment should make you feel good but make you understand that this is just a time and place in your life's journey and it will pass.

    Life has a funny way of teaching us things. I was told to love my cancer...I thought the person who said this to me was nuts but through all the pain and agony whether physical or mental came a huge learning curve in my life.

    Always remember you will not always feel this way Scared and in pain.

    I have chosen to face things head on no matter what but I armed myself by eating more alkalizing foods and drinking water with a high PH level. I eat or drink more raw veggies and stay away from dairy and sugar.

    Sounds crazy but by me taking a stand on those things I walk into the oncologist office like a champ! 

    Bone pain is not fun, I had it....scared after treatment, I had it.....plus many other things.

    Wish all of us didnt have to go through any of this but these are all autoimmune diseases so believe it or not your goal and everyone elses here should be to build your immune system up real well so our bodies can fight off not only the cancer but the adverse effects left on our bodies from rads and chemo.

    Love your BC sista...(((HUGS)))

    Patrice

    Carol my thoughts are with you

    Carol,

     You know that Chemo makes us weak and tired. It could be many other reasons why you want to take a nap and feel fatigue, including CBC, electrolytes, hemoglobin, infusions themselves

    You have done remarkable come backs, I am sure there is another one around the courner.

    Hugs

    New Flower

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #13
    New Flower said:

    Carol my thoughts are with you

    Carol,

     You know that Chemo makes us weak and tired. It could be many other reasons why you want to take a nap and feel fatigue, including CBC, electrolytes, hemoglobin, infusions themselves

    You have done remarkable come backs, I am sure there is another one around the courner.

    Hugs

    New Flower

    Oh, Carol

    It's hard to have hope without energy. You sound so tired. I so badly want there to be a "fix." You know, if you just take this pill or do this or that, everything will be fine from now on.

    All I can say is I hear you. We all want you to feel better, be here for the miracle.

    Sending good thoughts and lovely ocean air.

    xoxo

    Victoria

     

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #14
    Oh Carol, I am so sorry that

    Oh Carol, I am so sorry that you are going through this.  I am praying hard that this is the chemo and you will start to feel better soon.  Sending gentle hugs and positive thoughts.

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #15
    CypressCynthia said:

    Oh Carol, I am so sorry that

    Oh Carol, I am so sorry that you are going through this.  I am praying hard that this is the chemo and you will start to feel better soon.  Sending gentle hugs and positive thoughts.

    Carol...

    I hate, hate, hate that your are in pain - and going thru all this. I wish I had a magic wane - something to make this crap go away.

    I love, and adore you - my HERO.  Continued prayers going out your way.

    Gentle hugs, hope and strength my dear beloved Carol.

    Vicki Sam

  • 1surfermom
    1surfermom Member Posts: 396 Member
    #16
    VickiSam said:

    Carol...

    I hate, hate, hate that your are in pain - and going thru all this. I wish I had a magic wane - something to make this crap go away.

    I love, and adore you - my HERO.  Continued prayers going out your way.

    Gentle hugs, hope and strength my dear beloved Carol.

    Vicki Sam

    Carol

     I too wish that what you are going through would go away. I hope that the next chemo treatment will give you the time to rest and relax and take away some of the pain.I hold you close to my heart and will keep you in my thoughts and prayers. Love Surf

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