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When You Just Don’t Want to Fight It so Hard Any Longer

I was diagnosed with NSCLC in April ’16, diagnosed with surgery to remove large masses on my RUL and RLL (multiple nodules throughout both lung fields). This was a complete surprise. As a non smoker, very healthy, active 53yo, this was not the diagnosis anyone really expected. Certainly not I. My surgeon gave me the news when I woke up in ICU.

A little backround on me… I am a RN. I have been blessed to have practiced nursing in several fascinating areas through my career, with my final (and most beloved) being as a Hospice RN/Case Manager since 2011. I am very familiar with the care of pt’s with whom I now share a diagnosis. I am quite familiar with the disease process. I am most definitely aware of how this usually goes for people in their early 50’s who are otherwise active and fit. So with that knowledge came some quick reality checks for me. I sincerely had no any desire to fight this ugly disease. That was not born out of depression at all, but out of a sincere deeply held personal belief that I have never wavered from…the belief that (for me) quality of life always supercedes quantity of life. This is a life belief I developed long ago, and from which I have never wavered. Anybody who knows me at all knows this. So, when it came time to start making decisions regarding treatment, I was firm in my desire to follow my beliefs.

However, with all that also came the understanding that the people who love me most ALSO had beliefs AND a need to be heard, to have their thoughts, opinions, wishes considered. My amazing young adult children. My father (my rock), siblings, extended family. My incredible support network of dearest friends and colleagues. All were trying to wrap their heads around this diagnosis and its implications. Their grief. It was a difficult time. I prayed a lot. I spoke openly with my most trusted confidantes. I certainly cried a lot. In the end, I agreed to pursue treatment WITH the understanding that if I decided in my heart I just couldn’t do it anymore, my wishes be respected.

Fast forward 2 years. These have been a tumultous 2 years, seeing many lows. Loss of relationships. Loss of the dream that was my planned future. Loss of a career I cherished. Loss of so much of my independence. Loss of much of my physical health. Gifts too though…realizing how very much love I have in my life. Reflection on so many amazing adventures I have been blessed to have in my life. Time to tell those I love how much I love them and to have the chance to let them really understand that I am truly at peace. To give all those I love a chance to also come to peace.

And now to the point of my story…I sincerely don’t have a desire to fight too much harder on this. I genuinely don’t have the “I’m going down fighting” mentality. I admire all those that do, but wonder sometimes if there are others in our cancer community that feel as I do? I pray that my ultimate death, in whatever way it manifests, to be peaceful. Dignified. Pain free. Surrounded by love. And most especially that those left behind who will be grieving have peace in their hearts in knowing we will all meet again and that this is just another path in life’s journey.

Thanks for letting me share.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mb57
    1 year ago

    Thinking of you and sending prayers your way. Peace be with you.

  • Moira Cistola moderator author
    1 year ago

    Hi there.
    Thank You for sharing your story! You touched on several really pertinent concepts! First…the fact that you had no real expectation of having anything be truly “wrong”…had a friend look at an x-ray for you…talk about a surprise for both you AND your friend. Then, the exhaustion of the constant “croupy” cough…I feel your pain my friend. It is just exhausting, constantly. It is hard to explain to others just exactly WHY we are so exhausted, but we are. It is real. Wishing for one of your naps to be the final one…I hear you.
    A question? Have you given any thought to reaching out for Hospice Care? Or, if you are not quite appropriate for Hospice care, than perhaps Palliative Care?They are both great options and can truly add life to your time if not (or perhaps even) time to your life…just a thought.
    Love to you!
    Moira

  • barblu12
    1 year ago

    I started with a hacky little cough late last August that wouldn’t go away. We had lots of forest fire smoke here in the vally so I presumed it was from that. After a couple of months I presumed I had some kind of allergy so took Zirtec for a while – it seemed to help a little. When I was still coughing in February this year I decided to consult with a long-time friend who is also a doctor. The reason I let this go on so long is that I have had overly excellent health all my life, did not have a family physician and I was just not familiar with anything that could be otherwise. My friend/doctor took an exray and there it was – a large mass in my upper right lobe. I decided immediately that, at my age, I would just let it run it’s course and take me when it was time – nothing but pallitive treatment when needed. The thousands of dollars spent on me for treatment could much better be spent on a younger person with a life to look forward to and more than 2 or 3 years at most to live anyway. Besides, I didn’t want the uncomfortable life that treatment seemed to bring on to others. I’m still content in my decision but I’ll have to say it’s not the easy, painless, or smooth trip I thought it would be. I can’t believe how totally the lack of breathing ability can knock you down – and how tired the constant deep croupy coughing can make you – and how many strange new pains arise in different parts of you that you had no idea were related. I will say that going to a friend/doctor (who is wonderful as a friend) has not been a good idea and I’m actively looking for a primary physician who meets the guidelines for my medi-care, medi-cal, PHP healthcare plans (that I’m required to use due to running out of retirement money a year or so ago) so I can get updated on things like stage, progress, etc. as well as hospice and pallitive care consultation. Meantime, I’m hoping that one of these naps that I’m constantly taking will be my last. Who can go on a cruise when just getting some clothes on in the morning makes me sit and gasp for 20 minutes before I can walk into the kitchen for coffee. Not the fun plan I was concocting 9 months ago and I sure don’t plan on playing this game for another couple of years. I can still laugh at stuff though so for now, it’s on to comics and kittens. Warm Hugs to all

  • Moira Cistola moderator author
    1 year ago

    Hi there.
    Thank You for sharing your story! You touched on several really pertinent concepts! First…the fact that you had no real expectation of having anything be truly “wrong”…had a friend look at an x-ray for you…talk about a surprise for both you AND your friend. Then, the exhaustion of the constant “croupy” cough…I feel your pain my friend. It is just exhausting, constantly. It is hard to explain to others just exactly WHY we are so exhausted, but we are. It is real. Wishing for one of your naps to be the final one…I hear you.
    A question? Have you given any thought to reaching out for Hospice Care? Or, if you are not quite appropriate for Hospice care, than perhaps Palliative Care?They are both great options and can truly add life to your time if not (or perhaps even) time to your life…just a thought.
    Love to you!
    Moira

  • barblu12
    1 year ago

    by the way – I’m going on 88 this year. Old enough to know better {grin}.

  • SharonWalker
    1 year ago

    I too am a retired nurse ( I’m almost 70) and worked many areas including Hospice. I too have Stage IV with resection of upper and lower lobes on right.. and i have another one growing now on the left . I was told in the beginning that genetically there is no treatment, especially since they were watching the ‘spot’ on the left to see what it was going to do. I was offered cyberknife and radiation this time on the new tumor .. but since I’m told they will eventually grow back and/or metastacize, I turned them down.

    Being older than you, nearing the end of life anyway, and without other relatives to worry about, I have no desire to fight ‘the good fight’. I prefer to just let nature take it’s course.

    Many well meaning people, including other nurses, tell me I must be depressed to make such a decision, even at my age. I made my choice many years ago, when I decided after watching the suffering of many, that I do not want heroics ! Just COMFORT MEASURES.
    Again, many think that’s wrong but all I can say is ‘the choice is mine, leave me alone!”

    That said, I have no intention of sitting around waiting for the end, however long that might be. I prefer to live each day to the fullest, knowing the some days I can function better than others but I just do what I can and enjoy the time I have.

    Shoot.. Folks who have never been through this have no idea what you and are are talking about. They should not stand of judgement of our choices.

    At the same time, they also want to know when I’m moving into assisted living ( not till I can’t take care of myself!), and that I should be running around, going to gym ( I walk), and a dozen other things. They seem to want me to just ‘rest’.. Well , I have knews for them.. I don’t care if I have to crawl or my friends have to carry me .. I’m going rafting in Glacier NP this summer!!!

    So .. the choice is yours. You know what you feel, what you want, and sometimes those well-meaning folks just have to accept the Circle Of LIfe. All I can tell you is, do what feels right to you, and enjoy each day as much as you can. Who knows? An asteroid could drop out fo the sky and land our heads and we’d be gone. This way, folks have time to ‘get used to’ the fact that life is not endless.

  • Moira Cistola moderator author
    1 year ago

    A KINDRED spirit! Thank you.

  • JacS
    1 year ago

    I read your story with complete understanding and love.
    May your next journey be gentle.

  • Moira Cistola moderator author
    1 year ago

    Thank you.

  • MARM
    1 year ago

    A beautiful story from a beautiful heart. Your decisions come from what you believe and no one should ever try take that away from you. You are kind and generous to have lived the battle for two years until your family and loved ones could perhaps come tp terms with your diagnosis. You are an angel here on earth, rest easy you will be loved always and forever.

  • Moira Cistola moderator author
    1 year ago

    Wow! Such kind words…I am not sure about the “angel” part 🙂 But I appreciate the sentiment. For me, in the initial period of the diagnosis MY response, feelings, actions were all I really comprehended. But a few weeks into it I finally truly heard other’s voices and came to understand that in fact, not only was I diagnosed with this hideous monster, but by extension others were too as they were called to observe and help me in this fight with this rotten disease. To not consider their feelings would be cruel.
    Being able to slowly open up and be real with this support group has been liberating. To say real things, express real thoughts that my family and love ones just can’t sometimes bear hearing me express…has been the pressure release I have so desperately needed. I just wish for others to gain from this support as well. It is vital.
    Moira

  • MotherT
    1 year ago

    Thank you for sharing your story Moira. You can’t imagine how timely this is for me. I was diagnosed in July of 2016, stage 4, NSCLC , multiple nodules in both lungs. I found out yesterday that it is progressing and I will begin my third type of treatment in a few days. This time I will lose my hair and my already tired body will have to deal with many more side effects. I too believe quality of life is of the utmost importance. I long ago decided I would not call this ” a battle” because I didn’t feel like I could actively fight something so sneaky! (I know, but the term works for me) I choose to persevere, hopefully with grace, for as long as I am able. I am blessed with family that have told me that they will be right beside me, treatments or not. Thank you again, and here’s to many more days filled with happiness and love! Blessings, Teresa

  • Moira Cistola moderator author
    1 year ago

    Hi Theresa! Thank you for the kind words…and I agree with you…the word sneaky is so appropriate. BATTLE is a word for a somewhat equitable fight…this disease does NOT fight fair that is for sure. I will pray for you. Please email me anytime if you want to talk.
    Moira

  • Jeffrey Poehlmann moderator
    1 year ago

    Thank you for sharing your story and your perspective. I’m curious whether you had genetic analysis done on your tumors to see whether you would be a candidate for targeted drugs or immunotherapy. When I had been diagnosed in 2014, chemo was my only choice. After 2.5 years on Alimta, I had a new analysis done from a liquid biopsy and it opened up new options for me. This eventually has led to the clinical trial I am now participating in. For someone who is relatively young and healthy, it seems that there are many good options out there, some of which are much lighter on the side-effects side of things.

    All the best,
    Jeffrey, LungCancer.net team member

  • Margot moderator
    1 year ago

    @FreeSpirits thank you so much for taking the time to share here with the community. I know there are others here that have similar thoughts and perspectives and feelings, and it’s wonderful to have you share your journey with us here. We’re here for you, and thinking of you. It sounds as though you are really advocating for yourself and your wishes in your decisions which is important. We’re so glad to have you here as a part of our community wishing to share. Warmly, Margot, LungCancer.net Team Member

  • Moira Cistola moderator author
    1 year ago

    Hi Jeffrey,
    Great question. Yes they did extensive testing and unfortunately the result was that traditional chemo remained my best option. I have a fantastic oncologist who is well respected for his intellectually ethical standards..i felt safe and comfortable that he really explored my options. Ivam absolutely open to participate in studies…if not for an extension of quality of life for me than for that goal for others.
    I really appreciate that question…new treatments are being explored every day and asking the questions are the best bet for fine tuning best outcomes. Thank you.
    Moira

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