Holding open two very different doors

One recent morning as we snuggled in bed at dawn and watched the peaks above town turn pink, my husband Richard and I talked about one of the things that’s toughest about this journey with his brain cancer: the need to hold open two opposing possibilities for the future.

While we have to be prepared for the worst outcome, for the possibility that the growing tumor in his right brain will end his life in weeks and months, at the same time, we cannot abandon the hope that the course of chemotherapy he’s just begun will help his naturally strong immune system stop the tumor and his amazingly resilient brain will recover.

We’ve talked about the “what ifs,” as in what if things get worse. When you’ve been diagnosed with a glioblastoma multiforme, a type of tumor known for insinuating its many branches throughout the brain, commandeering the vascular system to fuel what amounts to a hostile takeover, you have to face the worst.

So we’ve discussed end-of-life care. “Maybe I should go to the VA nursing home. I don’t want caring for me to wear you out,” he said.

I swiped the tears from my eyes and took a deep breath. “Thank you. But wouldn’t you rather be here with me? I’d much rather have you at home.” He allowed that he’d rather sleep with me as long as he can. “Well, that’s a relief,” I said tartly. We settled on hospice care at home.

We’ve talked about what he wants to do with his body: “I remember hearing a resident talking about dissecting a brain for the first time,” he said. Then, as tears leaked from his eyes, he continued, “I’ve been a teacher most of my life. I’d like to donate my body to the medical school. I like the idea my death of offering a learning learning experience for someone.”

And, holding each other close, we’ve talked about what it’ll be like to part physically. I reminded him that we’ll never really part: “We’ll live on in each others hearts. We’re part of each other. You’ve shaped who I am, and I think I’ve shaped you too.” I had to get up and get us tissues after that one.
At the same time, we have a lot of what I think is legitimate hope that he’ll survive this passage with brain cancer. In the two weeks that he’s been taking a steroid to control the swelling in his right brain caused by the tumor, his brain function has not only not gotten worse; it’s actually improved a good bit.

Not just the fine motor skills, either. Yes, he can button his shirts and tie his shoes again–and what a relief that is to a formidably bright and physically strong guy who is not used to being helpless!

He’s also regaining some subtler aspects of brain function eroded by the growing tumor: he’s quicker and more aware. He’s able to work on his laptop again, something he hasn’t been able to do in weeks. He helped me plant our tomato starts in the garden, using the watering wand to fill the channels of the walls-o-water, something that requires serious quickness and manual dexterity.

All of which may not seem like much, but when you’re dealing with a significantly impaired right brain, it is big stuff.

Which is why we’re holding out hope that he will survive this terrible passage, and recover to return to his practice of sculpture, working with native rocks he calls “ambassadors of the earth,” creating art and functional objects like the beautiful sink in the photo above, work that offers promise to help heal our often tormented relationship with this unique blue planet.

It’s not easy to hold open these two very different doors as we go about our days–one opening to the end of his life, the other to his life continuing beyond the horizon we can see. That’s part of living with brain cancer, and a poignant reminder that none of us knows what’s ahead. We all want to have time to do the work of our hearts, to use our particular gifts to make the world a better place.

Isn’t that why we write?

Learn from our journey: Don’t waste time. Use your gift well. No excuses!

13 responses to “Holding open two very different doors

  1. Susan, as difficult as it is to read your posts, I’m so glad you share your and Richard’s journey with us. While my issues pale in comparison to Richard’s, and yours, too, I can identify with coming to terms with being less than able to do the physical things I used to do so easily. I miss my mind, too, though, again, not in the same way or for the same reasons as Richard. I’ve also had a sister with a brain tumor (she’s fine) and another, my baby sister, fifteen years younger, who had a brush with cancer, and I had to consider what life would be like without her in it. That was especially difficult to think about when I remember changing her diapers, giving her a bottle, etc. When I read your posts and see all the issues you face, it reminds me in some ways of my own long-buried memories. I think this is good. Thank you, and Richard, for being willing to share your journey with us. Sam

  2. Sam, Thank you for letting me know that our journey is useful to you. I think that anytime we have to face the fact that our lives don’t last forever, and that our abilities change as we age, it’s one of those learning-moments that helps us be aware of the value of now, this moment. And also, as you say reminds us of the stories that make up who we are. So take the time to write about those long-buried memories. There’s something really poignant in remembering diapering and bottle-feeding your baby sister, especially in the light of her brush with cancer. Maybe that’s a blog post for One Woman’s Day, or an essay in your life-writing…

  3. Barbara L Miller

    Your beautiful writing is an inspiration! As I find myself in New York City, here at 72years old to witness the first marriage of my youngest son at the age of forty, your ponderings about transitions is are particularly poinant. Many thanks and blessings upon you as you go forward on your current journey

  4. Once again, something to thank you for, Susan. My relationship with my baby sister isn’t the easiest one so I don’t often visit those old memories. However, I did once write about her cancer on my old writing circle so maybe that’s the beginning of a new visitation that will open some doors. Thank you, thank you, thank you. Sam

  5. Susan, sharing Richard’s and your story helps remind us of what’s truly important in life: love, intimacy, awareness of the treasures that each moment brings. So thank you for sharing. You are also a model for others of the importance of talking about these critical end of life issues, to know and be able to provide what our loved ones want. Difficult discussions, yes, but so necessary. Much love to both of you.

  6. Sam, I think sometimes the most rewarding writing is what’s not easy. And perhaps exploring the beginnings of your relationship with your much-younger baby sister can bring you to new insights. Congratulations for keeping an open mind and being willing to explore the hard stuff!

  7. Amber, Thank you for seeing and articulating so clearly what I’m doing in writing about this journey. It’s so easy to assume that we’ll have plenty of “somedays” to write or talk or do whatever we put off because it’s not easy. One of the mixed blessings of living with a terrible chronic illness like brain cancer is that it tends to sharpen one’s focus, every day. Sometimes we’d rather look the other way, and sometimes we do, but Richard and I are both aware that in that moment of inattention, anything can happen. Blessings to you…

  8. Susan, this is beautiful, both inspiring and tear jerking. You two are very brave and strong. What comes through for me is all the heartfelt and honest communication you engage in along this journey. Thank you for sharing this personal piece with us.

  9. Renee, You’re welcome, and thank you for your comments. I think Richard and I are fortunate in having cultivated both the habit of talking to each other about the deeper stuff, and of being as mindful as we can be. That makes the journey easier–or at least less difficult.

  10. Susan,
    As life writers you model several important things to us. In addition to writing the hard stuff with grace, you are showing us how a memoir can be built post by post as an open diary.

    Minding the business of death is not so easy, but the most important thing we can do in life.

    Janet Riehl

  11. Janet,
    As always, you cut right to the heart of things! Thank you. I am indeed writing memoir “as it happens” as Susan A said to me. I didn’t start out saying, “Oh, I’ll write a memoir in blog posts”; I just knew I had to write about this journey as it happened in order to keep my balance and such sanity as I have. ;~) “Minding the business of death” is a great phrase for this work we do at the margins of life we prefer not to think about, even though as you point out, this end of life is important in the cycle too. Blessings to you for all you do! Susan

  12. What a beautiful post. You are fortunate to have found someone as caring as you are Susan. I wish you all the luck and hope that the outcome is such that the two of you have much time together still ahead. You are both brave for facing the alternative. I admire you both.

  13. Pat, Thank you! As you know, what we get in life is the material we have to work with. Richard and I feel very fortunate to have found each other, and to have worked at making our relationship a deep, caring and respectful one. We try to use those same qualities in dealing with the hand we’ve got. Not that we wouldn’t prefer a different one! Enjoy your lovely spot in Idaho…

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