In Sickness and in Health: Let’s Do This!For many, many years, we kept that promise during healthy times. With Darrell’s glioblastoma (GBM) diagnosis, we faced having to make good on the other part of our promise: The part that required care in times of sickness.
Although Darrell’s diagnosis felt like (as it does for many GBM patients) a bolt out of the blue, there was no question in my mind, heart, or spirit that I was fully committed to caring for my partner. We took this photo the day before Darrell headed to the hospital, the day before we learned about the letters “GBM.”
Erased!The night I sat in the hospital with Darrell and his probable diagnosis of GBM, the looming diagnosis felt powerfully real. Not one single bit of denial seeped into my consciousness. I felt like I was incredulously asking, “This is really happening?” and simultaneously affirming to myself, “Holy Moly, this is really happening!”
To accept Darrell’s probable diagnosis, I erased so many mental images I had conjured of our future together. Every notion of the future we thought we had coming to us was just gone during those dark hours of the ICU.
One image of us I erased at diagnosis was of Darrell and me spoiling grandchildren together. Here we are at the park recently with granddaughter Nova.
Do You Know how Bad this Could Be?Darrell’s diagnosis certainly brought challenges for me as a wife and partner—challenges that he never had to face.
I still shudder when I try to imagine what Darrell faced with his immediate, GBM-driven retirement and the possibility of a shortened life on Earth. But I can say that I, alone, faced the possibility of life without my partner.
Our struggle was a joint struggle: Together we threw ourselves into his treatment, battling for his life, or at the very least, a few more months together.
Despite the academic knowledge that we all “live on borrowed time,” reciting that phrase was something different for me than facing the trauma of the very real possibility of an empty future: A life without my partner.
That realization shifted our roles as life partners.
What Do I Know about Self-care?In the early months, I remember feeling that many people expected me to have special insights into emotional health and self-care, insights miraculously granted alongside the traumatic diagnosis of my partner’s GBM.
Really, who do you know who prioritizes self-care? Most of us just try to meet our many obligations throughout the day, right? Life is busy. Self often comes last.
I can say now that I had absolutely no tips to share with myself, no ideas on how to manage, as a caregiver, the emotional fallout or the physical strain of facing the diagnosis and the entirely new world of brain cancer, its treatment, and insurance wrangling.
My present-day self would definitely tell my traumatized, early-days-after diagnosis self: “Get help. Find someone who knows more than you do. Talk to someone about coping with trauma and caregiver stress. Learn to care for yourself now. You should have learned earlier, but be kind. Your future self will have nothing but gratitude for the time and work you put into learning to care for yourself now.”
I learned that self-care does not begin with a pedicure. (Of course, get the pedicure. Just don’t start with it. Start with your head, heart, and spirit, I would tell myself.)
Now, I can say I’ve learned so much. Now, I can give tips. Now, I tell myself things like this:
- Put some blank spots in the calendar. When life is busy and full, adjust your expectations.
- Admit that you can’t do it all. No human can. Treat yourself as kindly and with as much love as you would your dearest friend.
- Sit still. Take a breath. Feel your feelings. Feel all of them. And feel them deeply. It seems to help the tough feelings pass and usher the good ones to return more quickly.
- Write down your priorities. Commit to them. Become okay with saying “yes” and “no” when those are the right answers for you.
What’s the Name of this Race Again?I know of no person who has achieved balance in life, with or without a GBM diagnosis. Darrell and I certainly hadn’t managed it in our busy lives before brain cancer.
But GBM changed the name of the balance game for us. Now, instead of “balancing” roles of work and leisure, “balance” has become the effort of changing focus. Of running both the sprint of today and the marathon that continues tomorrow. Of maintaining a focus on the near and far at the same time.
The GBM diagnosis panicked us and took us right to our bucket list. We tried to enjoy every adventure we might miss because of brain cancer. We lived on adrenaline, it now seems. The very colors in our world were brighter as we greedily inhaled the air of yet another morning.
Now, we work hard to balance our heightened appreciation of the daily gift of life with the need to think beyond the adrenaline-charged sprint and into the marathon, into the race that requires our energy and attention again tomorrow.
We’ve seen some of those future images (Nova at the park) that we never thought we’d see. We flew first class. We drank really expensive wine. Now, we need to balance our newfound zest for the moment with a harnessing of our energy for tomorrow. And just maybe for the day after.
Push. But Not too Hard.One thing that I struggle with as a caregiver is knowing how hard to push. Should we just sit, literally and figuratively, in the safety of our comfort zones and our central air conditioning? Hasn’t Darrell earned it?
Or should I encourage (okay, push) him, lovingly, just a little? Should we live life a little closer to the envelope of what seems possible? Possible in terms of the guidance we’ve received from Darrell’s medical team. And should I push myself? Should I (and how should I) continue to develop and grow as a person made sadder, wiser, more loving, and infinitely better by brain cancer?
Life with GBM is still life.
Here we are swimming, on an Optune break, for our 37th anniversary.
And here we’re are as newish hikers. We put our feet on the Appalachian Trail this summer.
We are both so thankful for another new adventure together during our summer vacation in Massachusetts in 2021.