Grief is a sacred journey

A Word that Changes Everything

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Photo on an altar in 2007

“I’m sure it’s cancer,” the oncologist said in an I’m-telling-it-straight voice in 2006. He forced himself to look into Vic’s eyes and then mine. “We don’t know what kind, so we can’t treat you until we figure it out.”

Vic looked down. Then he looked at me with mournful eyes. He swallowed hard, choking down the indigestible.

Vic hadn’t been well for months, but his symptoms were subtle and changeable. Puffy ankles, a lingering flu, and fatigue. He willed himself through teaching and grading papers. Not unusual for many of us, but unusual for Vic. A few weeks before seeing the oncologist, our close friend and chiropractor Dr. Fred Weiner was in town for a visit, so we set up an appointment. Fred looked startled when he palpated the lymph nodes in Vic’s groin.

With hair and no diagnosis in 2006

With hair and no diagnosis in 2006

“You need a sonogram immediately,” Fred said and called Vic’s internist to request it.

How long had I overlooked that subtle foreign smell on Vic’s breath? Was I smelling cancer like a dog? When did I notice it the first time? Why didn’t I know then? Would it have mattered? Why had so many doctors missed those lymph nodes or had they even been there before Fred discovered them? Even after fancy tests, it took another month to diagnosis the invader.

I bought a sturdy college-lined notebook after we talked to the oncologist, the “my husband has cancer notebook.” My life felt unreal and out of focus. I wanted to remember everything and another part of me wanted to forget and deny. Remembering won.

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Writing in my journal in Vic’s hospital room 2007

Even though I was sixty, I’d never been in an oncologist’s waiting room or a room filled with chemotherapy stations. I had heard of bone marrow biopsies and stem cell transplants, but what were they?

The day the oncologist said the cancer word, he added this. “I think it’s lymphoma. The good thing is lymphoma can often be treated.”

Hope. I grabbed for it, but Vic coughed and blew his runny nose. His inflated ankles mocked me. He’s sick. Can’t you see? Seriously sick. Cancer sick. This is no food allergy.

I eliminated wheat, soy, nightshades, and a few other things from his diet. Just in case. I was a nutritionist. It’s what I knew how to do.

Vic in his last months with our friend Steve Smolen

Vic in his last months with our friend Steve Smolen

The morning of the biopsy appointment, I wrote in my new journal:

“Belly fear. The wheels turn, the stream runs downhill, time moves forward. I can’t stop it and turn it back. I can’t wish away the cancer word. It’s mine. It’s ours.

“All I can do is see it through. How can I support Vic when my tears spill all over him? I can’t pretend. I can’t hide. We know each other too well.

“I’ll learn to live with fear,” I wrote. “People in Beirut, Darfur, Tibet, Afghanistan. People in refuge camps or people in violent neighborhoods know fear bigger than this. They know a fear that says you can vanish in an instant. Just like that.”

Last family photo a few weeks before Vic's death

Last family photo a few weeks before Vic’s death

Some friends pushed the threat away with “I’m sure he’ll be all right.” How did they know that? It didn’t help to say it although I knew they meant well. Later, they would say his love would always be with me. I knew that, but I liked Vic’s body and his soul. He was a total package.

I never imagined this possibility. Not him. Not us. But then, why not us and why not him?

The cancer word changes everything.

***

Have you kept a written record of the good, bad, and ugly? Do you use that record in writing or self-understanding? Keeping journals during Vic’s illness was one of the best gifts I gave myself. The Ithaca Voice published an article about my practice of journal keeping in Cornell Grad Writes for Herself and Others to ‘Get through Loss’. For other another post about living with love and gratitude during cancer therapy, see Betrayal of the Body.

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35 Comments
  1. How whole-heartedly you recorded this tough journey even when your heart was stabbed with grief. I will share on Facebook.

    • Thank you, Marian. Those journals didn’t let me forget the hard or the good times. I’m glad I was faithful about recording. Sometimes at the end of an emergency room sort of day, I’d just make a list of events before I fell asleep. That was enough to stir more writing the following day as we waited for more information. Thanks for sharing, too.

  2. Eloquently written sadness Elaine. I know those rooms and consults, and that ugly ‘C’ word. When you hear mention of it, your stomach drops, you want to throw up, and yes, we grasp for that ounce of hope. My husband was one of the lucky ones who survived stage IV prostrate cancer. It was a long road, and his body paid dearly from the ravages of treatments. But he’s alive, I keep reminding him when he comments on his ailments, the side-effect remnnants of his treatment serve as reminders that he fought and lived to tell.
    I always keep notes, it’s what we do. <3

    • I sigh when I hear someone has a cancer diagnosis. I always hope they’ll be one of the lucky ones with a cure, but the usual seems to be a long grueling treatment that eventually wears us out. I’m so glad your husband has done well, but I know he got worn out, too. Yes, he’s alive and you’re traveling together. I understand needing to complain, too. I’m not as good about keeping a journal as I used to be, but I’m constantly writing short pieces about what matters to me, so that seems to be my journal for the moment. Everything in files I try to keep organized–sort of. Be warm. Be well.

      • Thanks Elaine. I’ve got too many journals in my head. The best thing is to jot down some of the storylines from there which gives us much to write about when the time is right. I’m sure that’s what it’s like for you.
        Did you get my reply about your travel plans? Have you decided to take the chance on the 45 minute connection?

        • I got your message and made my reservations. I chose a 4 1/2 layover rather than a 45 minute one, even though it was twice as expensive and would take me twice as long to get home. I knew it was the right choice in any situation but particularly in March, but was glad you verified it. I have enough travel anxiety because of airport noise and inability to decipher announcements. To me, it sounds like they’re speaking Russian or Chinese or some undiscovered language.

          • I’m so glad you chose the longer route Elaine. Sometimes the extra money is worth the peace of mind and no agro. As for the the airport noise, sheesh, it bothers my ears too, and I don’t have a hearing problem. It’s always fuzzy and sound likes jibberish with 2 good ears! 🙂

  3. Dear Elaine, this is a beautiful, heartfelt article. I’m so pleased that you were able to find the courage to write in your designated “Cancer” book and later transform those sacred memories, writings and life-changing experiences into the extraordinary, inspiring book that “Leaning into Love” evolved into. Discovering your blog and reading that very same, heart-warming book, were two of my greatest joys last year.

    I deeply resonate with, “I’ll learn to live with fear” and found that by writing out my dark childhood I also found that crack where the light pours in … for I know that my poetry saved my life, on more than one occasion. In order to move forward, I needed to record my dark descent, although I had no idea during those years, that in the darkness, in that descent I would become pregnant with new life. Warm winter wishes, Deborah.

    • You write such thoughtful comments, Deborah. Thank you. As I wrote this piece, the focus shifted to include the importance of keeping a journal. That felt like the take-away point. To remember and mine our experiences as treasures of the deep, even when they are upsetting or things we would rather avoid.

      I’m so thankful you found a poetic way to let light in and find meaning after a hard childhood. My dear friend Lauren who was with us at Vic’s death and spent much time with me afterward said often, “You’re pregnant with your grief.” That was the original title for my book, ‘Pregnant with Grief,’ but no one got it so I left it behind. Still, that was my inner state. Deep down in there in the ashes and rubble, something new was being born. May you be as warm as I am with my new wood stove.

  4. Powerful and moving.
    I journal. The whole package: good, bad and the in betweens.

    • Thank you, Vivienne. Yes, the good, bad, and in between. I have more trouble with the in between because I get bored with myself. My dream notebook helps with his since I write down what happened the day before and dreams never feel boring.

  5. Pregnant with grief. Wow. I didn’t realize this was the original title for Leaning Into Love. It’s a powerful image and the way in which a woman’s identity emerges after her spouse’s death requires a long gestation period, doesn’t it? The metaphor makes me appreciate even more the importance of self-care during grief and gestation of a new self.

    • Perhaps too strong to say original title because there was no book then, but as I wrote, those words led me. I spoke them to many people including Larson before I met you, but people either misunderstood or didn’t like it. It’s an idea that suited me for the reasons you give. We’re down there in the demolished depths, but we are pregnant with our new lives. Here’s the quote from Leaning into Love (pg 145):

      Privately, my tears feel like teachers, but in front of others, I feel weak, out of control, and ashamed. I would like to hide my grief as Mom and I once did, but I can’t remember how.

      “You’re pregnant with grief,” Lauren said soon after Vic died. “You’re going through labor. A new life will come.”

      • Our friend Lauren was like a guardian angel to have at that time. Although she’ll always be with you in general her specific presence and sage advice was a major difference at just the right needed moments.

        • Lauren was a guardian angel, ever present during Vic’s illness and after his death. She swabbed his mouth and rubbed his feet the last three days. Even though she’s in California now, we manage to have long and full visits at least once a year.

  6. A journal has often helped me to sort out my feelings, Elaine. Recently I read a quote (source I can’t remember) about someone who said they only wrote when they were sad or angry or depressed. That comment made me think about my own journals. I feel the urge to write when in a contemplative mood. The writing itself makes me feel light.

    I’ve written during times of depression also. I didn’t get lighter but I did get clearer. Sometimes that’s the most important thing.

    Beautiful photos here. So much love.

    • I love learning a little about your journaling style, Shirley. It’s best for me to write every day, even if the content seems boring. I tend to skip days when I’m feeling less driven or emotionally charged. Contemplative writing produces something quite different from emotional writing, and you encourage me to write more often from that part of myself. My journal helps me figure out how I feel about something or what I want to say about something that confuses or upsets me.

      Last night a new cycle of writing classes began. I’ve been taking classes with the same woman for many years. It’s always wonderful to write surprising and spontaneous things during class. I have a separate journal for writing class filled with short stories, some of which become blogs. I think that will be true of what I wrote last night about visiting my audiologist and “hearing” disappointing news. And then there are the dream journals. Lots of journals around here.

  7. Weird. I never wanted to write in a journal or anywhere. When my daughter got cancer, that was the first thing she did – write. And she blogged about it too, when she was conscious. Cancer changed everything, yeah. Luckily my sister was into journeling and posted a newsletter for our family and friends while I was scrambling around in the trenches. Cancer kept me too busy to think about writing or drawing or doing anything. But when my daughter died, and I discovered her writings, writing was the thing that saved me. And today, I can hardly let a day go by without writing. The good, the bad, and the ugly.

    • Yes, the good, the bad, and the ugly. I was and I think you were trapped in a foreign and traumatic land. I always wrote during or at the end of the busy crazy upsetting hospital days because I knew I would forget the details. I also needed to keep track of myself and my reactions to what was happening. I sometimes remembered what doctors forgot. They’d suggest a medicine. I’d remember they’d tried it 6 months before and Vic had reacted badly. Maybe my journals were ways to find control in an uncontrollable situation. I’d journaled before, so it was natural for me. I’m grateful for Marika’s journals and how they’ve helped you write about and digest the heavy blow of your daughter’s death. Be well and warm.

  8. Skimming through FB this morning, I came upon your writing and felt as if I’d struck gold. Your writing is so personal, touching and profound. I don’t know how much, if at all, you may be up to speed on my own life’s journey but to make a very long story very short, the year after I left Ithaca, 19 years ago, I met the man who became my husband this Dec. 29th. In reading your reflections, and thinking of our vows (’til death do us part’) I realize more than ever, those are both the right, and the totally wrong words. Today, I’m ordering your book to help me remember what’s most important and also to serve as guidepost for the inevitable journey that we all must take. Thank you.

    • Bob, I’m so glad you found my writing. Makes me very happy to hear from you. Is it only 19 years ago that you left Ithaca? I’m so glad you found deep love and a meaningful marriage. Congratulations. There was a recent article I shared on my FB author page from the New York Times named something like “My Marriage Didn’t End When I Became a Widow.” We can add Widow(er) because this is not a gender issue. I am constantly surprised by Vic’s continuing presence in my life, an inner support, a frequent dream character, the voice in my head when I want to talk something through. I never feel held back in any way but only supported in whatever I choose in life. I hadn’t imagined this continuing bond. I now know it’s often the case, but we don’t talk about it in our let’s-move-on world. Thank you, Bob. And thanks for buying my book, too.

      • Elaine,
        Thank you for your writing and sharing. I am a widow as well. I am also a blogger and I have been sharing my Grief journey. My husband and I were newlyweds when he suddenly died of an abdominal aortic aneurysm. Our vows never included the phrase ‘Till death do us part’ We choose to use the phrase “From This Day Forward” If you put the phrase in the search bar on my website you will find the post I wrote less than 24 hours after he died. I had been a blogger all along and so I needed to let my readers know what happened. Thank you for sharing your own story.

        • Thank you for reading and commenting, Christine. I just read “From This Day Forward.” (http://www.christinejbaxter.net/from-this-day-forward/) I also read “About Christine” and “About this Blog.” Your love and your spiritual values are real, palpable, and alive. I’m amazed you could be so articulate just 24 hours after your husband’s sudden death.

          I love your vows. My husband and I said a traditional ‘Til death do us part in 1968. I didn’t know then that death doesn’t part us, at least not in my case. It does changes the relationship in a drastic way. I feel inwardly in touch with my husband every day, but I miss his body, his hugs, his loving smile, his interest in my every little thought and feeling. As with you, missing him doesn’t stop me from creating a new rich life. I’m grateful to know a bit about you and your life.

  9. Eloquent, poignant, inspiring, gut-wrenching. You’ve walked a path too many of us have or will follow. Thank you for the light you shed along the way.

    • Thank you, Roxanne. “This being human” is challenging, isn’t it? We all have to wrestle with mortality, but somehow our culture decided we could push that idea under the bed and pretend it wouldn’t happen to us or anyone we love. I’m glad a sense of light comes with my direct look at loss. Your words are the best complement I could have.

  10. Pregnant with Grief – a very powerful possible title thanks for the story behind that Elaine. I loved reading this and the comments too. I’ve been journalling all my life it seems – a few gaps in between – but mostly ongoing even though I still do not find it easy. It helps me clarify my thinking and feeling.

    Thank you for this post Elaine, so beautifully expressed.

    • It was a powerful idea for me, Susan. I was talked out of it as a title by the confused reactions of many people. It got complicated. Impregnanted by grief but pregnant with new life? Oh well. We’ll just keep writing and trying to clarify.

  11. Elaine, this is such a touching piece. I was spared the oncology appointments when my Dad was ill, him living so far away, and I unable to travel. But I relate your grief. The grief, that comes before the loss, and the grief of the afterloss.

    You write so beautifully, Elaine. I’m glad your gift has helped you through such devastating times, and continues to cushion the grief now. I’m sure others who are going through (or have been through) similar will find some comfort here. I know do.

    Thank you for sharing. Kimmie x

    • Thank you, Kimmie. I’m glad you were spared the oncology appointments, but at some time most of us are touched by this disease or love someone who is. It’s modern life. Your feedback is so encouraging. I’m glad we can comfort each other and read about each other’s survival process. Knowing how you make it through the rough spots helps me make it through. With gratitude to you.

  12. Thank you Elaine. Because of your journey, I’m encouraging my sister whose husband has Alzheimer’s to continue to record her daily struggles. It may help others someday as your book has.
    Love,
    Margaret

    • A great idea, Margaret. Alzheimer’s has its own special heartache and so many of us have to deal with it. I’m sorry your sister and her husband have to deal with this, but it can be lifesaving to watch for and record the wisdom, love, rough spots, and even humor along the way. She’ll be glad she preserved all of it. Thanks so much for your encouraging words.

  13. Thank you Elaine for your reminder of the power and importance of journaling. When I go back and look at my almost indecipherable notes when David was first in the hospital, I can’t believe that I had the presence of mind to express my emotions. The words were simple, but full of fear, pain and confusion. The yellow legal pad is wrinkled from tears and the tops of the pages are rough and jagged from the quick tear from the cardboard backing. They are my treasures now and keep me grounded and humble. Yes for us, like with you and Vic, it was ” until death do us part” , but the distance doesn’t seem as far now as it did in 1993.

    • I see your dripping tears and torn yellow pages, Kim. Vic did physics problems on those yellow legal pads. Thank you for sharing your heart. No, it isn’t such a large distance, but it is shrouded in mystery.

  14. Such a poignant piece. I can only think how much your heartfelt words must mean to others who are losing or have lost a beloved partner to cancer. All those feelings – fear, disbelief, anger, denial, and that deep, lonely ache of grief… Your words bring hope and comfort to many – never stop sharing them, Elaine.

    • What a lousy word, Ann. Right up there with Alzheimer’s. This week a friend was told she has early Alzheimer’s. What a deep sense of despair that brings to people and families. Vic’s mom is 100 today and still has a decent memory. Not a good one and I especially notice confusion about who is dead and who is alive, but she knows me, knows what year she was born, knows Willow, knows what she enjoys eating, and loves to laugh. So different from my own mom and her many years of not knowing. I was always grateful that, even as Vic was dying, he knew what was happening to him and knew I was with him to the end.

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