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Thread: "Negotiating" with Cancer

  1. #1

    "Negotiating" with Cancer

    I've been doing a lot of thinking about how I think about this whole cancer thing. The posts on this site are immensly valuable in helping to "sort" out where I really sit with it all. There are so many varied opinions and thoughts on how to cope with it that it has really changed my original feelings about dealing with cancer emotionally.

    My first, naive response, was for mum to fight, fight, fight!!!
    April51's philosophy really made me rethink that mind set.

    Realistically, the cancer is going to win, that is inevitable in mums case. Do we really want to fight a battle that can't be won?

    We are not fighting something that has a personality, a brain, or any animosity towards us personally. It is a bunch of crazy cells, that like every organism on the planet, has been preprogramed to reproduce and multiply at any cost. Cancer is really dumb, it will kill the host and itself too. How can you "fight" something like that?

    I have come to believe that it's about negotiating. The ending is a foregone conclusion, but you can "negotiate" the best deal for yourself along the way. It's about give and take. For example, doing chemo is taking some time back from the cancer, but, doing chemo is giving away some quality of life in the short term due to increased sickness.

    In negotiating this you have to decide if there is a nett gain for you in doing the chemo. Deciding the values on either side of the equation is really a personal thing as everyone will place a different value on each element ie quality vs quantity.

    OK, that's where my head is at the moment. I feel much more at ease thinking about this journey as a negotiation, than as a fight we will lose.

    At the moment it is an easy decision to continue treatment, She is giving away a little and hopefully should gain a lot in the short term. I know that as this progresses there will be increasingly larger "gives" and smaller "takes" and hopefully we will recognise the point when give outways take as April51 has.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  2. #2
    Ahhh, another statistical thinker. I am quite surprised so many people put so much emphasis on my decision. It is a negotiation. I don't like to fight anymore. Don't get me wrong, ask my ex-husbands and even my current one, I am a fighter. When I know I can win. Just like betting. Only on a sure thing for me.

    I just came to a point when I realized that fighting was counter productive in my life. Hardest thing in the world was to learn to smile and say Okay...

    The old addage: Do you want to be right or happy? This way of thinking has been and is for my entire life, and not just cancer. It came in handy when I got the disease of all diseases.

    Many many months ago I had a conversation with PBJ via PM. She never volunteered information, but when I asked if this could be beat she told me the truth with poise, grace and dignity. I cried. She grieved. She cried. I grieved. Then we got busy with living.

    All the statistics in the world can't change mine, or most of our lung cancer patients outcomes today. I think that might be a generation away. Much research and a lot of you caregivers on our side. Emily will make a huge impact one of these days. She is smart and has her head on straight. She is what good books are written about.

    That is where the fight fight fight is. People like Em. In the future people like her will get together and come up with funding for lung cancer. It won't be a smoker's disease even if you do smoke. It will be something to be BEAT. Have I put enough on your shoulders dear girl? But you are the one. The chosen one. You have what it takes.

    Back to you Natalie. Don't think of it as losing. Cancer will take your mom. Win with what you have with her. I smile every day and look at the sunshine in my life. I just did my daughter's nails and she is gone home now. To be with my grands. They will come this Saturday and spend time. That is what we have. Cancer can't take that from me yet. Jody/April51
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

  3. #3
    Senior User
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    Cerebral exercises wherein you can make peace with an inanimate enemy that personally bears you no ill will is cool, and comforting. As long as you can control the savage homo sapien inside you that is genetically predisposed to fight to the last breath. If you can "negotiate" a cease fire, or a brief respite, that's great, but as human as we are, we always want more and we want to win. Perhaps not at all costs, but the price can be elusive.

    The very language of cancer creates an evil that must be battled. "Malignant" isn't a noun, it's an adjective that identifies emnity and maliscious intent. Medicine creates a foe, a ravening beast that takes everything. For many of us, that is what it is. I can't see past the hate sometimes. I can't see cancer as anything but the cruel, hungry, greedy mutant it is. It has hate so strong that it is willing to end itself to satisfy the need to take.

    No, the hate shouldn`t overpower the senses to the point that the anger is self-defeating, but I will never make peace, any kind of peace, with this enemy. But that is me without cancer. Me with cancer could likely see the dignity in being `better`than what I face. I can choose to overcome my fear and accept the inevitable with all of the dignity I can muster. I like to think that I could bravely face the noose, but there isn`t a chance in hell I am going to forgive the hangman.

    I guess what I am trying to say is please, understand that this enemy, to those of us who remain to grieve, is anything but acceptable at any given point, and we needn`t feel guilty about wanting our loved ones to fight, fight, fight. We just have to try to understand that we are wearing different shoes and accept choices that can sometimes make us angry.

  4. #4
    Hi Lorieliz,

    Thank you for your response, that's why I already love this site and the women here who post their perspectives. Cancer is not a one size fits all hat - not for those who have it or for those who care for those who have it.

    My post was not an attempt in any way to say that my way is the correct way. It was purely just where my head is at the moment in dealing with the implications of this disease. I found that I had tried on some of the other "hats" and they did not fit so well. I guess I just don't want to hate right now. I don't have it in me at the moment. I don't want to look at my mum and be thinking of fighting and hate. I tend to find that I carry negativity in one area of my life into other areas of my life and family. But don't get me wrong, if I thought hating and fighting would get a better outcome for mum and the family, well just hand me those boxing gloves right now!. If fighting and hating are what get you through the day, then that is great, everyone copes their own way and will find their own philosophy that works for them and no one should feel guilty for choosing anything that works for them.

    Me, I was just expressing some satisfaction that I had found a way of thinking about this that seems to "fit" for me. I probably would have gotten here eventully, but seeing it so elequently expressed by others here has certainly sped up the process. We have in no way given up we will be trying everything possible to get the best result.

    I certainly feel different to you about the physical cancer
    "It has hate so strong that it is willing to end itself to satisfy the need to take."

    Although I find it easy to hate what the cancer is doing to my mum, I can't personalise the cancer and believe it hates. To me it's like any virus or bacteria that has entered our body, every single one has the potential to harm or eventually kill us if our immune systems fail to destroy it, but i don't believe that they hate us.

    I guess i just don't want to think that my mum would be taken from me by something that hated her. I don't want to feel angry when i lose her. I much prefer a more clinical point of view that equates to viruses and bacterias being similar to cancer cells in doing what they do and being programmed to replicate.

    But, that's just what gets me some peace of mind. Please do not think that I judge anyone who wants to cope with this by fighting. I'd have to judge myself too if that was the case as I was in that mindset only a couple of weeks ago and who knows where I'll be in the future.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  5. #5
    Hi April51/Jody

    Yeah, I am a statistical thinker - for good or bad lol

    But you can't take the emotion out of this disease. Your statements that paricularly ring true with me are:

    "I just came to a point when I realized that fighting was counter productive in my life."

    "Cancer will take your mom. Win with what you have with her."

    That is it exactly. I don't just want to see my mum as a cancer patient losing a "fight" I don't want either of us expending energy on fighting a losing battle. I'd rather put all our energies into making the most of what we have.
    Mum - Age 65
    July 12 - Onset of severe lower back pain and pathological fractures of L3 and L4
    Sep 12 - Multiple admissions for pain
    Oct 12 - Hospital admission and misdiagnosed as Multiple Myeloma then Lymphoma.
    Oct 12 - Bone biopsy and Marrow aspiration confirmed ES-SCLC with bone and lymph mets.
    Nov 12 - Commenced first round of chemo with little side efffect, 6 cycles planned.
    Nov 12 - Radiotherapy x 5 to spine with excellent pain relief results
    Feb 13 - Continues to weaken, not tolerating chemo well. Onc happy with scans.
    Mar 13 - Chemo failed, Rapid deterioration. Hospitalised for 6 weeks for palliative radiation on humerus which fractured, and on skull where tumor pressing on eye causing blindness.
    19 Apr 13 - Awaiting discharge for home palliative care.
    20 Apr 13 - Discharge cancelled due to developing pneumonia
    24 Apr 13 - My dear mum passed away today and is finally at peace.

  6. #6
    I'll write more later. It is late. Cancer, don't come at me punching because, I too, will pick those boxing gloves back up and start swinging. There are not enough words in the language we have. I can and will 'fight'. But it is not a good word right now. Live and enjoy is what I am trying to do. Jody
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

  7. #7
    Hi Jody, hi Natalie. So much pressure But I am determined to do something about it. Thank you, Jody, for those words. I'm flattered.

    My life is still in ups and downs, but I am waiting for a good time when it smooths out a bit and I can take a breath. I am always so frustrated by the lack of unity in the LC community. Its nobody's fault, but the cancers'. It doesn't leave us many survivors or advocates to help our cause. Its especially hard for me to do anything because I know Mike prefers to keep the information private. He doesn't want pity. But I still want to do something. I don't know what yet...but I can feel it in my bones. Jody here's a brave lady. You guys all are. I have no idea what would happen if I was diagnosed. I'd probably sit in some corner somewhere and balk. You guys are so strong.

    Em
    Boyfriend, 25, dx'ed Stage IV NSCLC 6/29/11. Malignant pleural effusion, liver/spine/lymph mets. Adenocarcinoma w/unknown primary! So confusing.

    Jul '11: 2 cycles Carboplatin/Alimta (failed)
    Oct '11: Docetaxol/ramucirumab/Xgeva/Neulasta
    Dec '12: Liver met growth
    Jan '13: 10+ brain mets, 2 wks of WBR
    Mar '13: CDK 4/6 inhibitor trial (failed)
    May '13: Tested ROS1+
    June '13: Xalkori clinical trial for ROS1+
    Aug '13: Liver mets gone, lung spots gone. Doing great so far!
    Mar '14: Leptomeningeal progression. Ommaya reservoir put in for intrathecal methotrexate.
    May '14: Tolerating chemo, hoping for good news...

    Blog: http://ros1positive.wordpress.com/

  8. #8
    Em you have such an opportunity here, coupled now with the raw emotion, to do something big. I sure wish I could be here to see the headlines you make. I'm so greatful to have gotten to know you and so very proud to have you on my side. Jody
    May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
    December 2011 CT scan shows all clear.
    April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
    October didn't work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, Iím going for door #2 and will continue to live well and enjoy myself until I donít. Iíll keep you posted. Live it up everyone!

    7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldnít but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

    I've taken a couple of nasty falls this last week. (first of & mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

    There is another node swelling on the other side of my neck. Still small.

    April51's (Jody) daughter posted that her Mother's journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

  9. #9
    Senior User
    Join Date
    Jul 2012
    Posts
    455
    NatalieC, my thoughts and emotions are right where yours are. This disease can be fought but can't be beat...not yet anyway. Fighting takes a lot of energy and I wanted to see my mom spend the energy on living life not fighting death. Death is imminent. We will all face it one day. Life is limited and meant to be lived. I guess for some the question is: Is fighting living? For some, it may be.

    Thanks for giving me something to think about ladies. Much love to all of you. Each one of you is inspiring! Anj.
    Caregiver to mom, 64 Ovarian Cancer Remission since 1997.
    6/19/12 Annual blood work - CA125 came back elevated.
    6/21/12 CT abdomen, RUL 2.8cm spot, LLL 5mm spot, lt. adrenal gland mass 8.3cm, rt. adrenal gland mass 4.6 cm.,
    6/28/12 Brain MRI-Clear,
    6/29/12 Lung Biopsy=Stage 4 NSCLC.
    7/11, 8/3, 8/23, 9/13/12 Chemo (Carb/Alimta).
    CT Scan 10/4/12 1 of 4 tumors decreased. 20% Kidney function. Blood transfusion
    10/9/12. Mets to liver.
    12/11 chemo (carb/taxotere) continued thru March.
    March 27, 2013. Told no more chemo, cancer now in the brain, to call out Hospice. Set up hospice March 31, 2013. Mom passed April 12, 2013. She will always be in my heart, never forgotten and always loved. May we reunite soon....after only a temporary separation!

  10. #10
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    Join Date
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    Natalie,

    My post was in no way meant to say that your approach was in any way "wrong" or less valid. I would never ever make that kind of judgement. Ever. I was just providing another perspective. I still have a lot of anger. It's more directed at "the man" now, who ignores lung cancer because it is in some way "fault driven" and blameworthy, but it's still there, and it still sees the beast.

    It helps me to visualize an enemy that is attacking, not a "benign" (for want of a better word - no pun intended) mutation that has no agenda. If I can "see" it, it is more real. I can't fight a microscope.

    Again, your ability to intellectualize is admirable, and I was in no way belittling your feelings or situation. I wish I could find that peace.

    Hugs,

    Lori

 

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