Denial

david54
david54 Member Posts: 164 Member
edited March 2014 in Caregivers #1
I am not sure how to share this so I will try to present it as specifically as possible.

My wife has stage 4 colon cancer. She has been on chemotherapy since December 07, Folfox and now Folfiri. Her last CEA “Dropped” from 96 to 95. Her last CT scan according to her oncologist was “Unchanged” meaning that there is still cancer in her liver and in all lobes of her lung. He told my wife that it’s possible that the CT scan cannot always differentiate between scar tissue and cancer cells. However the “Fact her CEA is elevated indicates it is cancer in her lungs and obviously in her liver.” This makes sense to me in a clinical way – it means what it means, she still has cancer that is being held in a “Holding pattern” so to speak with her chemotherapy.

My wife however takes it further and more or less throws reality out the window and tells everyone that she only has scar tissue in her liver and lungs, that the doctor told her cancer is too small to see and that her CEA is steadily dropping down to zero. Meanwhile I’m thinking “Were we in the same room?”

I have supported my wife every day since this hell started. To be honest I get tired and sometimes feel guilty when I start to walk with her through her denial, and yet would feel terrible if I did not support her positive outlook of what is happening. Where is the fine line?

Today I called in sick at my job because it is the day I would need to leave on my lunch hour to flush her PICC line, then go back to work, make up the hour I was gone then scramble to my other job (To help pay bills) and then hit the market at 10:00 PM to buy her Acai juice and more damn Ensure! I am just fried right now.

Thanks for letting me vent.

Comments

  • Mary616
    Mary616 Member Posts: 1
    #2
    What fine line? There is none
    I have stage 4 breast myself. I think your doing great! And actually so is your wife. Denial works so differently for everyone. Even that one number down can be the world, an sometimes we can ignore even the increases, and pretend they are just flukes. What matters from my side is the day to day support. The once in a while hug, the I love you, or just a look of just today, just for this moment, let it be OK. I know we take more time than you can some times give. My husband no longer works (and hasn't for years). We also have a severely retarded son with medical issues that no workshop or institution wants. So there is plenty of cargiving to do. We are on welfare for food stamps and medical needs. It covers most my meds, chemo and hospital visits. But any extras are out of the question. So for that 'fine line' of having to provide. I'm not sure if the money part of it makes any difference to me. If having less money means less time for support, and vice versa. That is a difficult one. But know one BIG thing your time and support of anything she truly feels is the most important. What she tells friends, is sometimes what she would like them to know, sometimes denial, sometimes it's her telling them not to worry and that she can handle things. But the most important is that you are there and she knows you know and she doesn't have to pretend with you. One day you will look at those Ensure's and cry and laugh at the same time. For now, come with a cold one, laugh, and give a hug.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #3
    post-vent-ive medicine :)
    David, just a few random thoughts from a head/neck cancer and lung cancer survivor:

    If the cancer is in a 'holding pattern', your wife SHOULD determine that that is good news. Maybe it is not the best news, but it means that the chemotherapy, if bearable, is doing its job, sustaining life, not making things worse, and stopping the cancer from getting worse, at least for the time being. To paraphrase Mary's take, one person's denial is another person's hope.

    I opt for hope.

    (And denial isn't hurting, even if that is the case, unless it impacts your wife's acceptance of recommended treatment, right?)

    It is, in fact, possible for the stuff that shows up in a scan to be scar tissue, particularly if, as the doctor notes, there has been no change since the last scan. Such scarring can be the result of smoking, bronchitis, pneumonia and any other number of causes. I cannot speak to the liver issue, but this is a possibility with respect to the lungs. This is a principal reason for recurrent scans, to see if spots/nodes are growing, shrinking or remaining static. Only when they grow do the docs get to the conclusion that they are dealing with a tumor (and even this does not mean that the tumor is malignant; a biopsy is required for that).

    I had a PICC line at home for a month, and had home visitations by a nursing service once a week to flush the line, replace the protective covering, and check for infection. Otherwise, my wife flushed it daily, after her normal work day. I am wondering if you can be relieved of some of your burden by seeking help from such a home healthcare service (via insurance hopefully, or, if not, and not affordable, through some charitable service)? Do not be afraid to ask! Start with your hospital, but do not forget that your closest ACS chapter is a good source of information too.

    With respect to the Ensure, I have been advised (I use Boost, but they are pretty much the same, as far as I can tell) that Carnation Instant breakfast contains pretty much what you get from Ensure/Boost, at a highly reduced cost. Even if doctors indicate staying with Ensure, see if it is possible to mix it with the instant breakfast and, say, ice cream, as my nutritionist has recommended. This will at least alleviate some of your costs in this regard (always check with your physician of course before listening to anybody in here :)). And, again, check with your hospital and/or ACS to see if there is a service available that will provide this nutrition for free or at reduced cost.

    Finally, David, there is this: you are an OUTSTANDING caregiver, and I salute you for your effort and concern. What I like to remind caregivers of, because I have seen the toll it took on my wife is this: to be a good caregiver, you must take good care of the giver!

    Be sure to take SOME time for yourself, David, so you can revitalize yourself and continue to give your wife the best possible support you can.

    Best wishes to you and your wife.

    Take care,

    Joe
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #4
    soccerfreaks said:

    post-vent-ive medicine :)
    David, just a few random thoughts from a head/neck cancer and lung cancer survivor:

    If the cancer is in a 'holding pattern', your wife SHOULD determine that that is good news. Maybe it is not the best news, but it means that the chemotherapy, if bearable, is doing its job, sustaining life, not making things worse, and stopping the cancer from getting worse, at least for the time being. To paraphrase Mary's take, one person's denial is another person's hope.

    I opt for hope.

    (And denial isn't hurting, even if that is the case, unless it impacts your wife's acceptance of recommended treatment, right?)

    It is, in fact, possible for the stuff that shows up in a scan to be scar tissue, particularly if, as the doctor notes, there has been no change since the last scan. Such scarring can be the result of smoking, bronchitis, pneumonia and any other number of causes. I cannot speak to the liver issue, but this is a possibility with respect to the lungs. This is a principal reason for recurrent scans, to see if spots/nodes are growing, shrinking or remaining static. Only when they grow do the docs get to the conclusion that they are dealing with a tumor (and even this does not mean that the tumor is malignant; a biopsy is required for that).

    I had a PICC line at home for a month, and had home visitations by a nursing service once a week to flush the line, replace the protective covering, and check for infection. Otherwise, my wife flushed it daily, after her normal work day. I am wondering if you can be relieved of some of your burden by seeking help from such a home healthcare service (via insurance hopefully, or, if not, and not affordable, through some charitable service)? Do not be afraid to ask! Start with your hospital, but do not forget that your closest ACS chapter is a good source of information too.

    With respect to the Ensure, I have been advised (I use Boost, but they are pretty much the same, as far as I can tell) that Carnation Instant breakfast contains pretty much what you get from Ensure/Boost, at a highly reduced cost. Even if doctors indicate staying with Ensure, see if it is possible to mix it with the instant breakfast and, say, ice cream, as my nutritionist has recommended. This will at least alleviate some of your costs in this regard (always check with your physician of course before listening to anybody in here :)). And, again, check with your hospital and/or ACS to see if there is a service available that will provide this nutrition for free or at reduced cost.

    Finally, David, there is this: you are an OUTSTANDING caregiver, and I salute you for your effort and concern. What I like to remind caregivers of, because I have seen the toll it took on my wife is this: to be a good caregiver, you must take good care of the giver!

    Be sure to take SOME time for yourself, David, so you can revitalize yourself and continue to give your wife the best possible support you can.

    Best wishes to you and your wife.

    Take care,

    Joe

    Call me Cleopatra, coz I'm the QUEEN of De Nile! (denial)
    Like your wife, I focus on the positive. If I can find any shred of 'good news' in any of my test results, or new case studies, or comments made by my oncologists, I cling to it and BELIEVE it, because I must remain hopeful in order to keep letting them DO all this stuff to me! And so, if that is denial, "Call me Cleopatra, 'coz I'm the Queen of De Nile!" Ha! (Gotta love country music!)

    Denial, rationalization,: whatever gets us through the day. Please just keep being there for your wife and let her have the little scraps of comfort she can piece together for herself. I see the strain on my poor husband's face, and I swear this journey is harder on caregivers than it is on cancer patients. (((BIG HUGS))))

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