Change the Channel

The first few months of this year have felt like a sojourn on an ocean liner in a cheap cabin below the waves.  I don’t even know whether such cabins exist, without at least a porthole for a view. But there have been a lot of storms, and I’ve spent too many hours with my head in my hands, trying to escape from pain, all the while feeling as though my ship is moving slowly and reminding myself that in this case, slow progress has its blessings.

At the start of the year I applied to participate in a clinical trial of a truly promising new drug designed to treat the metabolic behavior of cells with a mutation known as m-tap loss, which appears to be the mutation driving my cancer. I don’t pretend to understand this; it has something to do with methylation and making cells behave as cancer – in effect, it turns them cancerous.

After several weeks of waiting for hospital and pharmaceutical company paperwork to be finalized, then jumping through some medical testing hoops – a day at the hospital having blood and other bodily fluids drawn, a brain MRI, a heart echocardiogram – I began the trial on Feb. 15. My part was relatively easy: take two tiny tablets per day and go up to the hospital on the north side of Indianapolis a few times the first week, then once a week for a month. Sadly, the scans after the first six or so weeks showed that instead of shrinking, or at least stabilizing, the pancreas tumor had grown to 2” in diameter. Sobering. Along with other trial participants whose tumors had grown during the trial, I was not allowed to continue. (Please don’t comment about the legality or any other aspect of this. I don’t have the energy for it.)

With no further trials on the horizon that look the least bit promising – at least, from a patient’s perspective; hospitals and drug companies always need participants for trials, but I’m fortunate to have an oncologist in Dr. Bert O’Neil who is honest with me – Mark and I began taking in the reality of things more keenly than we had really felt the need to until then.

This April I had 13 radiation treatments for pain from the pancreas tumor, which had increased to the point that I could focus on scarcely anything else. That treatment caused its own pain, with nausea, vomiting (despite anti-nausea meds), and night sweats for bonus fun. After #13, I was done; any benefit that might come from the final two recommended treatments paled in comparison with the urgency of simply ending the misery. (For what it’s worth, my radiation oncologist had told me that many patients’ insurance policies won’t cover more than ten sessions. So having had 13, I figured I was well enough set that I could factor my then-misery into the decision.)

I have cried more tears over the past month than I had in the preceding three decades. It’s still precious few tears, but I’ll take what I can get. Ever since my diagnosis, the thought of leaving Mark, my sister, Joey, my parents, our home, and my garden has been heartbreaking. I’m at the peak of my work, in terms of shop opportunities and writing. There is so much more I would love to do – I have a list of commissions that people have been incredibly patient about, and spec pieces I would be thrilled to build; I have articles and books I would love to write. I want to keep seeing my garden grow, especially now that our friend Amy Dyken is taking care of weeding and pruning, which makes the garden’s beauty seem even more magical.

But pain is a powerful shaper of perspective. I’m no hypochondriac. Had I been a hypochondriac, there’s a chance that my cancer might have been caught early enough for therapeutic, rather than only palliative, treatment. For that matter, you don’t need to be a “hypochondriac” to get there; all you need is to value and respect who you are, and don’t let your doctor tell you there’s nothing that seems to be amiss so you should “put your mind at rest.” No. If something’s causing you pain, don’t stop trying to figure out the cause until you get to the bottom of it.  

I would put the pain I’ve experienced for way too much of 2022 at 8 on the pain scale. The utter wretchedness of the pain and nausea from radiation has made it easy, even delicious, to move from heartbreak over the prospect of leaving so much I love behind to simply basking in pain’s absence, now that my doctors and I have hit on an effective medication regimen and the palliative effects of the radiation have started to kick in. I have too many friends to thank publicly for encouraging me to be more assertive about my need for pain management, but if you’re one of them reading this now, know that I am silently singing your praises.

There was no reason to rush, no point in pushing myself to fathom this shift in perspective. From the moment Mark and I left the doctor’s office after hearing that I would not be allowed to stay in the clinical trial, I decided to give myself as long as it took to absorb the new reality. And it was a new reality, at least existentially, for me. I went through too many weeks of crippling pain in the interest of giving the clinical trial a chance to have allowed myself the perverse luxury of imagining the trial would fail, at least in terms of helping me. Instead, I felt convinced that the trial drug was going to help, especially considering the beautiful chain of serendipitous contacts that had brought the trial to my attention before it was even posted at; at this point in life, I’m happiest when I acknowledge the potential for something to be a good omen.

I hope the trial will show that there is an effective therapeutic dose of AMG193 in human patients, as there has been in lab animals. Do I wish that I could benefit from it, should that come to pass? Hell yes, especially after how much Mark and I threw into the project, from the many hours we spent driving to and from the north side of Indianapolis and the days we spent in room 209 at the Community Health North Cancer Center[1] to the pain and discomfort of the many tests the trial required, and most of all, the pain I endured as a willing sacrifice to the hoped-for success of the trial, all the while seeing hospice as a serious alternative that happened to be incompatible, for obvious reasons, with participation in a clinical trial. To be let go from the trial has been hugely disappointing.

But this is what we have in front of us. So we shifted our perspective. The top priority was to rest and regain my strength so that I would be able to view my situation clearly, and feel empowered. So, for one of too few times in my life over the past 20 years or so, I allowed myself the feelings, and especially the sadness, instead of telling myself I had no time for them, couldn’t afford them due to pressures from work or other commitments such as visiting family (at least, before Covid hit); didn’t need to burden myself with “negative emotions” (yes, I’m confessing to a lot here); etc.

I spent far too many years allowing depression to drag my spirits down in my youth, before I was aware that something called therapy even existed, and certainly before the invention of drugs that, at minimal doses, have turned out to lift me just enough to see the blue sky above the clouds. I’ve done my time. Now I want to have fun. I’m going to enjoy life. And there is no reason whatsoever why, with effective pain management, this experience, in full recognition that only a miracle would save my life at this point, can not be fun.

It’s all about perspective. After two weeks shy of a year-and-a-half since my diagnosis, I’ve tried a whole festival of alternative and complementary healing methods/traditions/whatever. I’m tired. By no means too tired to live. Just too tired to spend as much time as I have watching the “all pain is worth it, in the circumstances” channel and change to the “no, Nancy, this is what I mean about truly savoring each moment of every day, and part of that is enjoying it without pain.” My life has been full of blessings and challenges. Many of the challenges have at times felt insurmountable, only to prove rewarding. You bet, I’m creative enough to change this channel.

[1] The great compensation for spending those hours in a hospital for a trial that wouldn’t end up helping me, personally, was talking and laughing with the research nurses, Cindy Stoner and Donna Sullivan. It was almost worth driving up there every time just for the opportunity to hang out with them.

25 responses to “Change the Channel

  1. Thank you, Nancy. I always enjoy your posts regardless of their content. And thank you Mark for supporting her through this.

  2. Mary Ellen Polson

    Words fail me, as they so often do. Sending you waves of warmth, love, and pain-free clarity.

    Mary Ellen

  3. Jeffrey Silverman

    Thank you Nancy for this post. As someone who works in oncology drug development and runs trials such as the one you were on, I found your words both motivating and sad. Motivating because we absolutely need better and effective new agents that truly work. And, sad that today many patients, like you, are being underserved by our current therapies. I find your resolve and spirit amazing. We are all going to pass, most of us don’t know from what or the timeframe. And once defined, few of us feel the time we have is adequate. We need to cherish the time we have and appreciate our friends and family.

  4. thank you for sharing your hard journey and know that you are loved by so many. Feel freed up to watch the Spring turn into Summer. Becky Bernie

  5. Thank you for the reminder that we all have control of the channel even when it seems like we don’t. You and Mark continue to inspire so many. Thank you.

  6. Dear Nancy,
    Your flowers are beautiful, I’ve been cultivating bluebells for sometime and finally have a good crop.
    I have been traveling the “trials” of the cancer landscape with two of my family over the past years. As a carer
    not patient- I do know that feeling of
    a turn in perspective going forward.
    Really what I want to say is simply I hold you in my heart , and with great affection, with the presence and wonder of now. Our bluebells, Spring and so much more. So much more is what I want for you!
    xo, Debora

  7. Thank you for your beautiful, heart wrenching post. As a minister now hospice chaplain and amatuer woodwoker who has only recenly even heard of you and your work, my heart breaks for what you have and are going through. My prayers will be with you. Mark Tisch

  8. It’s so okay to not be okay & feel.”those” feelings. It’s hard for me too; so I can appreciate, commiserate, & validate what you’re going through. I’m on “indefinite” chemo for my recurrence, but I’ve decide to celebrate everything, BUT… I still give myself those times to be dad, angry, scared. I shed few years, mostly in my hot steamy shower, but that doesn’t mean i don’t “have” them. This precarious life is so precarious at times.💜💜💜

  9. Nancy- you are amazing and strong and inspiring. I wish you many moments of true pleasure as you savor the joys of family, friends, pets, your garden, spring and whatever else makes you happy. Sending you good vibes and best wishes. Anne (forever a Hoosier in my heart 😊)

  10. richardcprima3631

    So sorry to hear the latest news, my thoughts are with you. Take some consolation in the fact that you have made a positive impact on the woodworking world.

  11. Nancy,

    Thank you for sharing. Your flowers and vases are so pretty. I love the pictures from outside as well. I am sad to hear that your trials didn’t turn out as you had hoped. I remember the disappointments with my mother’s cancer journey, not to say there weren’t victories along the way as well.
    I am glad to read you have an effective pain control plan and that you are ‘changing the channel’. I will keep you in my prayers for peace and comfort as you continue to navigate through this time. Hoping to encourage you
    Amy, LuAnne Holladay’s sister

  12. I don’t know what to say except thank you for writing about your situation.
    My dad also tried new promising medicines for his cancer after he was given a “poor” chance of surviving his disease. His reasoning was if it didn’t cure him at least he could help other people, maybe his own children. Not all hero’s die fighting wars, fires or crime. I hope I’m as courageous as you if I have to face a similar situation.

  13. Nancy, I am sorry that you are experiencing such profound pain and disappointment. You have given me inspiration ever since I read Making Things Work, and here you are doing it again by changing the channel. Bless you!

  14. Laura McCusker

    Nancy, your generosity in sharing your journey so candidly is completely inspiring. You have no idea how many people from all corners of the world you’ve touched and the example you’re setting for hope, love, optimism, humor, pragmatism and strength to be the driving force to in a life well lived is amazing. Thank you so so much. X

  15. Nancy, you have been an inspiration to me ever since I read your first book. Your strength and courage continue to inspire me, I am so pleased with your honesty, it not easy. You are in my thoughts and prayers.

  16. Nancy, you fucking rule. Hang in there!

  17. I celebrate you changing the channel, and having the continued courage to write, create, and share your story. You are just amazing. Thank you. You have admirers, friends, and family all supporting you on this journey.

  18. Just to let you know you’ve written about almost everything that I touch in my shop. You’re in my thoughts today and everyday.

  19. This is profound, clear, gut wrenching and beautiful as anything I’ve ever read, dear Nancy. I want to ride this train — okay, or the ship of the cheap cabin — with you. I am happy to think of you as I continue to adjust my own channel in this near-Atlanta place that despite the reading I do to help me feel at home is still way elusive. What leapt off your page for me was “I’m happiest when I acknowledge the potential for something to be a good omen.” This is who both of us are. I am so happy that your reduction of pain brings you to this.

    My friend Ryan Gravel with whom I had lunch in town last Saturday, introduced me in his book, *Where People Want to Live, *to a French philosopher, Guy DeBord, *who *also resonates with me as I prepare my mss for a literary agent. “It is not a question of knowing whether this interests you but rather of whether you yourself could become interesting under new conditions of cultural creation.” When isn’t the world, short haul or long, evolving into some new stage and we with it?

    I have never considered the end of life staring at me, even as you contemplate this, while hoping for medicine to deliver its miracle. I did recently ask my GP how many years I could expect to live. He opined five, then amended to 10. He explained how an attack of infectious disease could make the difference. But your MD would offer you a shorter time frame. Your meditation in Change the Channel is as much worth sharing as anything you’ve written or fabricated before. I will keep returning to it for the comments, and ultimately just for me.

    Both the April and May issues of Atlanta magazine arrived yesterday(as I’d requested with my new subscription). I also had an email from the tourism chief of Acworth, Jeff Chase, housed in the city’s parks and rec department. He and I will talk Monday. Further steps as I await other books I’ve requested to arrive at the regional library. I like Jeff’s email. Our talk will be my first with anyone authoritative about the city. I find it a good omen that he called me Herb.

    I started this note last evening. I’ve just read the comments. This one from Shirley J. touched me deeply: “Just to let you know you’ve written about almost everything that I touch in my shop. You’re in my thoughts today and everyday.” And yes, the many who commented on the flowers in their vases at the top of the post; these flowers backed by one of your chairs in this domestic setting. You radiate the kind of peace that sets the most sophisticated mind at peace. How you resonate, dear Nancy, even among those who have never met you in person.

    I hope the day with Mark and the animals brings spring to your step.

    Herbert Lewis Hiller Placemaker/Writer/Lecturer (386) 547-0395 (c) 1908 Ascot Ter. NW Acworth, GA 30102

  20. Nancy, you are one of the good ones. I’m sending you all of my best positive energy.

  21. Kerry Thomson

    Dearest Nancy,
    Even in your process of looking at the end of life, you are teaching us how to live. Thank you for the beauty you see in the world, for sharing the lessons in how to change the channel, and for the gift of your creativity in generating beauty and tending it even in the small, invisible places. Sending you so much love.

  22. Amelie Mabbutt

    “I’ve done my time. Now I want to have fun. I’m going to enjoy life. And there is no reason whatsoever why, with effective pain management, this experience, in full recognition that only a miracle would save my life at this point, can not be fun.” We love you, Nancy! You claim all the fucking fun you can find, woman!

  23. So sorry to hear of the passing of someone with so much left to give the world. I have witnessed the destruction of this disease too many times and hope that I can have a small fraction of the grace that Nancy showed us when my turn comes. Rest in peace Nancy.

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