I left the Surgical Intensive Care Unit at the VA Hospital tonight as twilight was fading. By the time I got "home" to the motel where I am staying (one that has become all-to familiar during this grueling journey with Richard's brain cancer), the stars were beginning to appear over the city. I looked overhead and saw Orion striding across the southwestern sky. I stood still for a moment in the parking lot, looking up at the outline of the constellation's tall form.
(Illustration of the constellation Orion by Sherrie York, from my book Walking Nature Home)
As I did, these lines from "Change," a song by Tracy Chapman, came into my head:
"If you knew that you would die today
If you saw the face of God and love
Would you change?
Would you change?"
This morning at six-fifteen, just before Richard was wheeled off to be prepped for brain surgery, Jack, his night nurse, was kind enough to call me and then to hand the phone to Richard so we could talk for a few minutes. That moment when we reminded each other of our love is what came back to me in the parking lot tonight.
"If you knew that you would die today…"
Every time Richard goes in for brain surgery, he could die. This is time four, and let me tell you, it doesn't get any easier with practice.
The hope with today's procedure was to install a shunt that would drain excess fluid from the right side of Richard's brain, allowing it to decompress and function normally again. But when Dr. Brega and her team opened a small hole in his skull and inserted the shunt, "only a dribble of fluid came out." So they drilled more holes in the shunt tube, and inserted it farther into his right brain. Still almost nothing.
On to Plan B. They removed a larger piece of his skull and peered inside. They found "pockets of fluid" here and there, but nothing obvious explaining the pressure squeezing his right brain so it deforms his midline. Except that the membrane* protecting it had hardened and thickened, like a casing of scar tissue. They thinned and/or removed areas of the membrane in the hope that would allow his right brain room to expand outward.
The good news is that side of his brain is no longer compressed vertically: in the month since the previous surgery, it has moved back up to where it belongs. (It had been pressing on the floor of his skull and thus the brain stem, which controls essential automatic functions, like… breathing.)
Despite the anesthesia and painkillers, and the trauma of having his skull opened again, Richard seems more like himself than he has in a while. But it hurts my heart to see him disoriented and in so much pain when he comes out of surgery that he's almost frantic. It is difficult to leave him in his bed in the ICU with his head wrapped in gauze, the two temporary tubes draining the right side of his skull, and his voice hoarse and exhausted.
(Richard moving a ton of granite boulder that will become a sculptural firepit, using the one-person crane he designed and built for his work.)
"If you knew that you would die today/If you saw the face of God and love… Would you change?"
I saw the face of love this afternoon when I walked into the ICU after Richard's surgery and he smiled. That's miracle enough for me.
*****
*Here's cranial-sacral therapist Nicky Leach's explanation of the three layers that make up the meninges, the membrane that protects your brain: "Your post is reminding me of the beautiful meninges that make up the layer protecting the brain and how evocative their names are: the pia mater, the membrane around the brain means 'tender mother'; the arachnoid layer, where the csf flows, is so named because of its spidery avenues; and the dura mater, the tough keratinous layer that is contiguous with the inside of your skull means 'hard mother.'"
Up late and checking in. Your subtitle was the phrase running through my mind all day. The VLB’s (Very Large Beings) sprawled across the living room in the sun for most of the day, snoring softly and dreaming Richard forward into health and you toward rest. I joined them for a time.
May your aching and bruised spirit find the balm of sleep tonight.
Deep love.
Ay the pia mater. My my. At least he survived to smile and grimace and do other things another day. Been thinking of you both all day. Wow.
One day at a time. I’m grateful for the breathing that continues as this day moves aside to welcome tomorrow.
May you both rest well tonight, under shared stars.
I remember that illustration by Sherrie York, she wrote a wonderful post about never using ‘black’ paint. How she mixed a much more subtle and variable ‘dark’ colour.
Linda, Thank you for that wonderful peaceful image of you and the VLBs stretched out in the sun and snoring (surely not you!) on the living room floor for a while yesterday. Such sweetness and love!
Anna, As I just said in my morning update on Facebook, I was partly wrong about yesterday’s procedure: the thickened and hardened membrane that was removed was encapsulating the old hematoma that had formed in his right brain above the lobectomy site from last August. Once that membrane was carefully separated from the arachnoid and pia mater layers, his team said, his brain began to expand into the space, “rebouding practically before our eyes.” I think his cognitive functions are subtly but profoundly improved this morning, and R agrees. Neither of us can quite articulate it, but it seems real… Thank you for those powerful thoughts.
Deb, Bless you! I am not getting great sleep, but I never do in the city, with R in the hospital and me somewhere else.
Diana, Isn’t it beautiful? I love the color Sherrie used for the sky, with hints of deep blue and purple that give the two-dimensional image much more depth than flat black would convey.
I love this blog. My heart aches as I read of your struggles, both Richard’s and yours. But the words from you and your circle of friends are beautiful. Thank you for sharing this journey.
Martha, Bless you! If sharing it is useful to anyone, it makes the journey somehow lighter. Wish we were in Salida to see you this weekend…
sending even more love.
Thanks, Velma. It’s been a good day here, and that’s huge for us… I’m feeling pretty exhausted (Gee, I wonder why?) but am hoping for a more complete night’s sleep tonight than I’ve had in a while. And now, back to the ICU for another few hours with my love.
Heart lifting to see the words “good day.” ‘Tis a blessing on all of us. May we have a flood of them.
Sleep well.
Much love.
Susan, your blog posts that chronicle the journey you and Richard are on are filled with such detail, such soul-searching…such grace. I marvel at the grace you are able to put into words for all — and I hope that you find it part of the healing process. I also hope that you will one day be able to take these entries, and you many haiku poems and photos and create a gift for others who are on similar journeys.
I pray for you and Richard each and every day. I rejoice in the “good day” entries, I ache when the steps forward seem to be thwarted by this sneaky disease process. Blessings on you and Richard. With love, Lee
Dear Linda, May we all have a flood of good days indeed! I’m hoping that I sleep more than five hours tonight. It would be a pleasant change. I just left R’s ICU room where he was set to sleep well, I think, despite tubes and wires and especially the drain coming out of his right brain… Hugs, snuggles, and pets to you and your crew.
Lee, Thanks for your words. I am actually thinking about writing a memoir about this journey called something like, BLESS THE BIRDS: A Family’s Creative Journey with Cancer. I just have to convince Richard to add his voice and his art, and it may include our Molly’s voice as well… Blessings back to you and yours.
Sending love to you from Texas this chilly morning! Hope you can get a bit of rest. Hugs, bc
Awww, I know how hard it is. I need to send you a pic of Jeff with the “turban” around his head. I am so praing for you guys.
I’m learning about the night skies in your book. Yes, I’m still reading it, lol. It may take a year, I don’ know. I am writing my lifestory, Somewhere Over the Rhine, and I’m almost done. You encouraged me last year, and I listened.
I’m out of pocket a lot, but I’m still keeping up with your journey. You are an inspiration to me. Tell Richard an old farm gal in Tennessee loves him, who’s never met him. b.
Bobbi, Thanks for those hugs. I’m surprised it’s chilly there–it’s headed for a record-breaking 80 degrees today. I so don’t like this global climate change stuff…
Bettyann, I’d love to see a pic of Jeff with his turban. Tonight’s blog post will include a pic of Richard in his turban and Molly with him if I can make it work… I’m glad you’re working on your life story–congrats on making it happen and being close to the end. Richard will be tickled when I pass on your message. Blessings to you, and enjoy that Tennessee spring!
I’m guessing there’s a joke, somewhere, about the blessing of Richard being bird-brained. (I guess I should have thought of it, sooner myself, but then, I’m only an “honorary” Norwegian….)
Is Richard saving his VA turbans? I think it’s a nice look, for him. However, I’d be not one whit surprised if he’d rather never wear one ever again.
Yeah, I’ve changed my mind. He does look better, au naturale. ;~)
Eduardo, I hadn’t thought of that joke. I suppose being an honorary Norwegian, you have to try harder to think up bad jokes… Those turbans are not so fun to wear–they get scratchy and stiff. I think he’s much better au naturale.