No Marked Exits

Standard

There is a vague line between refusing to greet death and strategically delaying death. In this short essay that arrived in my inbox today, an oncologist calls out useless delaying tactics for stage iv patients. She summarizes, “Multiple lines of therapy in stage IV solid tumors have diminishing benefit, and this is where patients and families need to know that the finish line is the same. You can take the expensive, toxic obstacle course or you can take the easier, cheaper, nontoxic route with excellent hospice care.”

She is talking about me.

I accept my death even as I have not stopped trying to delay it.

Which is the hospice exit?

Recurrent ovarian cancer, clearly terminal, has dozens of treatment options. But, as quoted above, they tend towards diminishing returns.

In my little mind, I decide that by bartering my body to move intriguing science forward I am not just a societal burden. I am paying my way. Kindof.

Today is the birthday of the great, late Martin Luther King, jr. I am used to paying my way in more overt ways that rally others and myself to live inclusively and fairly – to exemplify MLK’s description of beloved community where no one is left untended or in need by policy or neglect.

Today, instead, I hobble with the dog around the block. I hurt. I have hurt for weeks now. I replaced the illness of chemotherapy toxicity with the pain of presumed cancer growth rearranging my torso. There is no escape as each step hurts. Seated I hurt. I am not the builder of MLK’s dream; at best I am the recipient.

I am eager for the HEATT trial to start. I count down in hours knowing that each day off treatment is a burden just as each day on treatment ended up a burden. Weeks like these make me throb with the stupidity of trying to outlive my disease.

The exits are not well marked with terminal illness.

There are dozens of things left for me to try. But when is trying itself wrong.

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

43 responses »

  1. HI Marcy,Sending light + love.   The offer of song with the threshold choir is always open 2 u….~~ Lily

    From: livingly dying To: lilyroselyn22@yahoo.com Sent: Thursday, January 15, 2015 2:29 PM Subject: [New post] No Marked Exits #yiv7423009978 a:hover {color:red;}#yiv7423009978 a {text-decoration:none;color:#0088cc;}#yiv7423009978 a.yiv7423009978primaryactionlink:link, #yiv7423009978 a.yiv7423009978primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv7423009978 a.yiv7423009978primaryactionlink:hover, #yiv7423009978 a.yiv7423009978primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv7423009978 WordPress.com | marcy westerling posted: “There is a vague line between refusing to greet death and strategically delaying death. In this short essay that arrived in my inbox today, an oncologist calls out useless delaying tactics for stage iv patients. She summarizes, “Multiple lines of therapy ” | |

  2. As I suspect you already know Hospice does wonders. They manage pain. They provide nursing and therapy and relief for family members. They are human being par execellence. Pamper your beautiful self. With admiration and love.

  3. I am so sorry 😦 I am still trying to come to grips with the fact that I am going to lose my wife, perhaps I am grasping at straws with providing her with a small variety of different treatments, I just keep praying that one will work, in the end she has the final choice, I fear her choice will be the one I most fear, I know I sound selfish for wanting my wife to live, and I am sorry for that, I hope what ever you decide that you can be pain free and comfortable, God Bless you, my heart weeps for you as well

  4. “finish line is the same”????????? Are you kidding me…..I hope I am not out of line here – but who gave this person (the writer) the right to describe your “finish line”………I’ve been an athlete all of my life and i have run races that had prescribed finish lines and then there have been some activities where I have defined my own. When I walked around Mt. Rainier – I had a finish line in mind – but frankly if I had started it and made it 20 miles instead of 94 – I would have declared 20 my finish line and been pleased with myself for having the courage to do it my way. If i had done the 94 and decided to keep going for whatever reason – well then so be it. If I had died out there trying – and there were a couple of occasions where I could have – well, then the finish line came when it did. She can call your actions “delay tactics” all she wants – but me – I call your tactics LIVING!!! and frankly, I have had more time with you because of your living tactics and I am a richer person because of it. Marcy – do whatever you damn well please – and delete the word wrong from your vocabulary…..and add to it………courage, hero, warrior, amazon………and then when you want hospice – pick up that phone and give ’em a call with all the gusto you have always had. Geezzzzzzzzzz, sorry for ranting – I got pissed off – and that takes a lot for me. Love you old friend. Doodle

    • I don’t know you, Doodle, but thank you for saying, in words, how I feel about finish lines and Marcy’s choice to set her own!

      Hope the HEATT treatment does wonders to make your life more enjoyable Marcy. Thank you for your writings.

  5. I so wish I could help. One more example of the loneliness of dying, and it breaks my heart. I hope the HEATT treatment gives you many more days of enjoying life. Whatever you choose, you are not a burden!
    OXO
    Tina

  6. Breakthroughs only occur from a test is done. As a test subject you have the opportunity to move potentially effective drugs and treatment forward. That is no small contribution. At which point the testing and trials stop is your decision, or until you run out of options. If you are successful at finding a cure, or stabilizing treatment, then not only you benefit, but many others. You have continued on because of your strength of character and attitude to not give up the fight, and your doctors and caregivers would not support you if you had less of an attitude.

  7. Love surrounds you at all times and in all choices…same for the people who love you. Blessings each moment are prayed for….and thank you for the blessing of walking with you in small ways through your blog. Prayers for the HEATT trial – thank you yet again.

  8. The doctor full of it. Yes, maybe continuing chemo after multiple failed attempts is a toxic, pointless obstacle course, but what you are doing might just be a breakthrough. So, far from knowing when to give up, you need to know when to keep pushing, which, actually, you already do know, and are doing.

  9. That is the inherent nature of a fighter. You fight bc you love life. There is nothing shameful about that; it is a wonderful reflection on you. You are truly an Olympian. The doctor who wrote this has never been in the sick patients’ shoes.

  10. If you have the will and the stamina, I don’t think trying is ever wrong. I’m not sure I would have the courage to withstand all the pain you have endured, but I understand why you want to devote even your eventual death to helping others find a cure for their cancer. I wish you days of pain free life, my friend.

  11. It all seems like such a burden, yet you somehow manage to make it sound like an adventure…so challenging much of the time yet sprinkled with moments of hope and happiness. You are indeed a courageous warrior. It seems you will do what you feel is best for you. Sending healing energy and thanks for all you have done and are doing and all you are. Love to you.

  12. All the layers & complexity, rhetorical questions & doubts of your journey so beautifully expressed. My heart joins others going out to you, Marcy. You are your own statistic. May your suffering continue to be meaningful to you until it’s not & the journey changes. May your moments of clear vision comfort you & light the way. Sending love & healing thoughts.

  13. Marcy, your spirit is being drained with all the courageous treatments you’ve persued and endured. Our medical society should be tracking every ounce of your indulgence to contribute to ‘their’ methods of prolonging OVCA survivor’s lives.

    Your stamina far exceeds what I would come close to enduring and maybe even others with this or other terminal diseases. You are to be admired for giving and giving and only to be cofronted by an email suggesting all ways to the finish line have the same results.

    No matter how far you choose to go or not go, your documenting the traveled road encourages me to know what’s possible instead of the easiest choice of hospice.

    Thank you so much for defying the odds and expectations of the medical society.

  14. You fight because you can. You will stop when you can’t. No road map to follow, no one has the answer. You educate us as you journey and I thank you deeply for taking us with you.

  15. Yes, the finish line is the same for all of us, because we are all terminal. But no one has to earn their right to live, and no one is a burden. Glad to here you’re hobbling around the block, Marcy. Wish it was skipping, or dancing, but hobbling will do just fine. Send some of that good HEATT in the direction of Chicago, where we need warmer blood, and good luck.

  16. This person sounds so much like a ‘doctor’ who is unaware of the living that is left in a 55 year old woman. It is one thing when one is older 80’s and 90’s and quality of life becomes a major issue. As a nurse I have seen too many people suffer the side effects of Chemo, knowing that the little bit of time that it buys is fraught with pain. BUT NOT on someone who is still vibrant, full of life, and ideas and passions ……. Of course there are older people who are still vibrant and full of passions, and to them I say – do what you need to do, as I say to you. We are all different and unique and our march in life is just as unique. You need to follow your own truth, your own bliss……. Marcy.. and do your thing. I am sorry for your pain, and wish I could help you alleviate it….. You have my dearest thoughts and unlimited blessings.. and faith in you.

  17. Marcy, my friend, hang in there. Evidently, the doctor who wrote that article has never had a life threatening illness. I have heard of many doctor’s ” only six months” and the patient proved them wrong. There is only one, God, who knows our finish line. Hold fast!!

  18. As many have stated so eloquently, there are no right or wrong answers on this topic. Our society’s medical knowledge has not advanced to the point where we can clearly state when it is “best” or “optimal” for someone to choose hospice over continuing treatment.

    However, I pose this question: If, as this doctor advocates, every stage 4 patient simply succumbed to hospice without even considering experimental treatments to extend life, then how would medicine advance at all? Marcy, I admire your adventurous and, yes, altruistic willingness to attempt a new treatment that could benefit future patients. I do not agree that EVERY stage 4 patient should refuse further treatment, although this certainly could be the right decision for some patients.

  19. Marcy,bless you first of all for your suffering. This disease devastates people and their families. Helping an extended family member who is at this stage now is difficult. While she can and is continuing treatment she has also started hospice. I don’t think the acceptance of death is in her heart. Being able to recognize is it fear of death, letting go ,or is it giving up before you were ready. while it is the individual who is dying their families carry that burden with them as well. Give up or continue? I continue to pray for each and all of you. Who can truly say that was the correct decision.

  20. Just one thing. This statement: “Multiple lines of therapy in stage IV solid tumors have diminishing benefit, and this is where patients and families need to know that the finish line is the same. You can take the expensive, toxic obstacle course or you can take the easier, cheaper, nontoxic route with excellent hospice care.” Oh, but if it were so simple. It’s a very complex issue because all situations are different and all patients are different. There are so many variables. To me, this statement has no substance at all.

  21. I don’t think trying is ever wrong. It’s a choice and it’s your choice. I remember when my first oncologist suggested I enter a trial. He tried to encourage me by saying how much it would benefit others. I was selfish then. It was too soon. Especially when I read the 10 pages of possible “side” effects and one was death. From my experience, the docs are desperate for people to participate in their trials. It is the only way to advance medical knowledge toward better treatments and potential cures. You are brave to do this. It doesn’t sound like any fun at all. While it may buy you more time, it is also an important contribution to the community. Ah, Marcy, I wish it didn’t hurt so much. I want you on this earth as long as you’re able to stay.

  22. Hi Marcy,

    Our circumstances are so similar – progressing cancer, diminishing physical capacities, limited treatment choices and a strong life force pulsing through each of us.

    Rather than pursue an “either-or” course, I’ve chosen an “all-and” course by integrating palliative care and unusual allopathic treatment options plus palliative care plus a wide variety of CAM (complementary and alternative methods). My main medicine since chemo failed me in 1996 has been the mistletoe based Iscador. While the cancer has progressed, my quality of life has remained relatively good and death’s progress has been slowed.

    Marcy, I want to remind you that it’s not all-or-nothing, either-or. There’s a lot more mystery here than almost any doctor of almost any stripe admits.

    My cancer rises and falls in cycles, even as different body parts are affected.

    Marcy, I will pray that not only is the HEATT trial successful for fighting cancer, but that it gets you back on your bicycle, reduces your pain, brings restful, restorative sleep and renewed appetite.

    You are far, far more than your body or your brain. You are a being of magnificent beauty. I celebrate you.

    Thank you for your generosity in enrolling in this trial. May it benefit you and may the trial results benefit future patients too.

    sending much love always,
    Stephanie Sugars
    http://www.mylifeline.org/stephaniesugars

  23. Thank you for your beautiful and meaningful blog post.

    Something that I was quite surprised to learn through my own sickness and disability is that I am of value just by being myself. The people in this world who love me want me to remain in their lives indefinitely, even if I am not supporting myself, earning money, or actively working to promote ideals that make the world a better place. This realization both humbled me and gave me the determination to keep fighting.

    I think it is very admirable that you are using your body and health circumstances to further medical technology and treatment. However, even if you weren’t, you are still valuable simply by being you.

  24. Marcy it is not accurate to say that you are not a builder of MLK’s dream. Every observation you share is a gift to humanity.

  25. I would guess that your lifelong dedication to seeking to improve society through social justice may tend to create a mind set that seeks to define social injustices in somewhat black and white terms, right or wrong. And that may be all well and good in that context. But to your question as to whether one should attempt to determine when striving to survive is “wrong” is perhaps a perspective that you might want to think about shifting to something like “When will know it’s my time to submit to the inevitable course of nature?” That of course is a difficult question to wrestle with, for all of us, the mere humans that we are. As a terminally ill patient myself (myeloma) I often consider that question; maybe too much, as is my nature. Nevertheless, it’s an important question to consider — when have I had enough? I think that you will KNOW when the time has arrived for you — when it’s your time to “take the exit”.

    Best,

    Steve

  26. A simple request for all the posters here….please watch the link to the James Taylor vid and then forward it to at least one person today…..Subject line: THANK YOU MARCY!!

    Best,

    Steve

  27. Thank you for sharing so openly, Marcy. I’m amazed at the audacity of people who feel compelled to create rules or finish lines for others. I’m not sure I believe in God, but no one short of God gets to define those “exit points” for anyone else. I hope the trial offers you pain-free time to continue to give yourself and the the world all that you do!

  28. Thank you for this posting. It’s moved me. I’m so sorry for your hurting, yet still optimistic about the HEATT therapy, but scariest of all is to imagine someday thinking back on you, as I do of Rudette and Glenda. That makes my heart jittery and I remind myself…be in the present moment. How difficult it is not to fear the future whether it is certain or uncertain, even the future of someone else! I love that you just keep moving forward, regardless of what others see as pros and cons and finish lines. Love to you.

  29. Oh hon. No one knows where that exit is, or when to fight or when to rest. We all bumble through and do the best we can. You’re a strong dynamic powerful woman who has give so much to so many — but we all need time to rest, time to doubt, time to be reassured. I wish I could refuel you, ease your pain and give you reassurance. I comment here seldom, but my thoughts are with you, for what little good they can do.
    — Ellen S.

  30. perhaps livinglydying is less about right or wrong. more about a decision you make in the moment regardless- knowing you are in the space of livinglydying. must be so difficult Marcy to be consciously aware of the options. thoughts from the stitcher in northumberland.

  31. If we all just ‘gave up,’ said our farewells and accepted ‘the finish line’ medicine would still be in the medieval dark ages. It’s only because Cancer patients are willing to become guinea pigs, often with gruelling consequences and little hope of success, that medicine and science have been able to develop more effective treatments, treatments that can and do save lives, and treatments that preserve the quality of life for as long as possible. I do not consider the trials of my treatment a waste of time, have gladly given pieces of me for further research and will continue to do so. My fate may already be sealed – time will tell – but the destiny of my niece, my friends daughters, and new born girls all over the world does not have to be. There is no finish line. There is only endurance and contribution.

  32. When I was dx’d in 2008 with 3c HGSOvC, the schtick was “ovarian cancer is treated like a chronic condition.”. Now, post AIG & Goldman Sachs, it is all about palliative care and hospice, rushing you to your death. It’s not like your family are good representatives, in thiscarticle, many whom would rather you stop so they could be relieved of ‘their’ suffering. It’s not like we’re infants and don’t understand the diagnosis, we become voracious readers of scientific literature, that our oncologists do not keep up with, and end up knowing more about choices available. Do you know many can only offer ” drug chemo stock on hand” and are owned by big drug companies? What if they wanted to use a competitors’ chemo drug that worked better? Ha!. Ask them to explain the cell biology of the cancer they treat–they can’t! They are guessing all the time–and we have seen it happen where the patient persists–and they hit the right guess! So, Marcy, I support your decisions. It’s an interesting journey.

    They mis-dx’d my adhesions in 2012 as sheets of cancer and gave me a quarter liter of morphine. I talk about this at my blog. I was dying from a bad medical guess, not cancer! The last statistic I read on autopsies–is upon autopsy–>70% of all diagnoses are wrong.

    Finally, it is no surprise an oncologist running a ” Hospice” outfit would be pushing Hospicebas an economic choice. The article is about money, her money, not compassion or life or cancer research . She only sees what she knows, and if the slipper was on her foot, she’d being making the same choices as us.

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