When new health detours keep showing up. it sometimes feels like I'm doing a free fall, unable to hold onto anything solid and stable. Ironically, starting radiation and chemo last week felt like a fairly stable, useful thing that I could hold onto, until the radiation mask aggravated a leak in the surgery incision, and then I was back in the hospital, going down more unknown routes.
But when I've paid more attention, the falling actually feels more like hang gliding with skilled guides and friends. I've always wanted to hang glide, especially when I lived in Virginia, and Jenny and I would go watch people jump off the Blue Ridge Mountains with hang gliders.
My time now feels like hang gliding because it often feels like I have to make a choice to jump off a mountain, like a couple days ago when I agreed to the drain being placed in my spine without sedation (but still plenty of pain meds!). It also feels like there are many up currents of wind that I have the opportunity to seize and ride. When it feels like a free fall, I keep feeling an unexpected current of life's winds blowing towards healing. Many of these currents come in the form of messages and connections from you. I also keep being reminded that I'm not flying the hang glider. I'm surrounded by very talented and compassionate care givers, and I repeatedly see the ways we are all being guided by divine, unseen winds.
Part of the joy of the feeling of hang gliding is gliding along side friends and family, who are on different, connected journeys, and taking delight in seeing you soar. Last week, my daughter, Grace, decided to give a speech to her class and run for student council. Last month, this would have been unfathomable for Grace. I'm finding so much joy in her new found strength. And when I heard that my friend Bo was recently appointed by Obama to the board of the White House Initiative on Asian Americans and Pacific Islanders. I felt another surge of joy in seeing someone close by soar.
Sometimes, especially by myself at night in the hospital, it seems like most of the new interior places I'm being invited to are long pathways through suffering into freedom and letting go. They mostly feel like gifts, even though they are heavy gifts. I've been reminded this morning that joy is often on the other side of those pathways.
I was also reminded by my friend Tom of the ways I'm on the path of healing from brain disease with so many other powerful people, including Tom's wife, Julie, and their walk with Alzheimer's, my father-in-laws time with Parkinson's, a colleague's small son who is also doing chemo for brain cancer, my father's hydrocephalus, and so many others. I'm honored to be linked with this powerful team. It feels like the compassion and insight that we collectively have could transform not only brain disease, but how we as humans relate to our brains and each other.
This morning my surgeon offered me some encouragement by letting me know that the swelling on my surgery incision has almost gone away entirely, so draining the fluid seems to be working. I'll probably be in the hospital until at least Wednesday, as they continue to monitor that and take pressure off the wound, so it can heal.
I've always loved to travel. Now it feels like I'm doing as much travel as ever, all from a hospital room. Many of those travels with some of you. I look forward to sharing more of those journeys with you, as we jump together off mountains and glide over valleys, pointing out good winds to ride.
I'm attaching the song that best fits for me this morning, "From This Valley."
I pass by a room in the interior castle, while distracting myself with Donald Trump on TV.
I can see John of the cross and Teresa of Avila in the room, comparing hidden notes about delightful wounds that tear away illusions of separation.
I'm intrigued, but I continue to let Donald distract me from the potential illusion-shattering tube threaded up my spine or the cancer thinking of next moves.
I thank Teresa and John for the glimpse of what I'm not ready for, grateful for both the glimpse and the distraction.
Another day in the hospital, some headaches and nausea, but not too bad, mostly just waiting for fluid to drain out of my back, to help with the healing of the incision on my head. The nurses say the worst part is the boredom, but I kind of like the quiet waiting time.
Last night the fluid from the surgery incision leaked some more, so Jenny and I went back to the neurosurgeon's office this morning. From there, they admitted me to the hospital for something called a lumbar drain. It is a surgery where they stick a big needle in near the bottom of your spine, and put a tube in there to drain out spinal fluid. In my case, it is to reduce pressure from the fluid on the incision in my head, so it has more space to heal.
I have had very little physical pain in my life until recently, but I've spent a lot of energy trying to avoid pain. When I was about 8, I ran out of a doctor's office and into the woods to avoid a shot. I avoided it for the day, but still got it later. So today when the thought of being awake for the lumbar drain sounded especially worth running to the woods to avoid. I'm also aware that my dreading of physical pain has been quite tiring, and the dread is usually worse than the actual pain.
So once I knew the lumbar thing was likely today, I wanted to be open to a different relationship with pain--one that opened me up to other people and to God in new ways, one that I judged less, and was more curious about. I was also pretty scared about it. When I found out that I couldn't get the sedation meds today because I'd eaten this morning, that upped the ante.
Not surprisingly, the pain of the procedure wasn't as bad as I feared. It was intense and freaky, but it also felt like God was being gentle with me in my changing relationship with pain. During the procedure, I returned some to the floating over mountains while listening to Across the Universe in my head. I'm sure the narcotics helped with that too. And knowing I survived the procedure helped increase my confidence a little for the next things like that. I didn't feel completely broken up to compassion and suffering in myself or the universe, but i feel grateful for the gentle steps in learning.
So now I'l probably be in the hospital for about 5 days, while the nurses monitor how much fluid comes out of the tube attached to my back. The hope is that this helps the wound on my head heal and seal up, and then we start radiation and chemo again soon after that. Today also reminded me and Jenny that we don't know what is around the corner, but we can keep taking the next step, paying attention to possibilities for new kinds of intimacy and grace along the way. Squeezing Jenny's hand during ouchy moments in the neugosurgeon's office has been one of my favorite sensations of the week, even though it was accompanied by being poked with a needle. I pray we keep noticing and soaking up the next moments of grace as we move forward.
Your messages here on Caring Bridge and elsewhere are a lifeline for me. Thank you, dear friends.
Before my surgery, I posted a list of things I want. I felt really good about the list. It felt powerful and true to me and cathartic to name these things to you. A couple things on the list didn't happen. The Twins didn't make the playoffs. My tumor wasn't benign. Some other things are still in the works.
I try to keep returning to my friend Janet's advice--grieve, deal with what is, and work on wonder.
Since starting radiation on Monday, some more things have happened that I didn't want to happen. I had been feeling happy about how well the incision from my surgery was healing. But then a swollen area of spinal fluid developed under the wound. This can be somewhat common and isn't necessarily harmful. But during my first radiation, the pressure of the radiation mask pushed out some of that spinal fluid. Yesterday a nurse from the surgeon's office put a needle in the fluid sack to drain out the rest of the fluid, but more fluid quickly came back in. Shortly later, the second radiation treatment pushed out a little fluid again. Then today, I'll probably get more fluid drained out before radiation, but if this keeps happening, they might have to stop radiation for a while so it can heal better and avoid infection. They might need to do more to stitch things back up to keep the fluid in. I started radiation and chemo feeling confident about this step, but the setbacks have felt deflating to me, even though they might smooth out fine.
A coupe years ago, I invited many of my friends and colleagues to a TED-like talk,where I talked about how I had lived in the cult of self-development, often getting stuck while trying to make myself better by my own will. I asked for helping leaving the cult and instead surrendering with gusto to life--surrendering to community, to the source of life, and to the transformation of systems. After the talk, a thoughtful friend said to me that I talked a lot about surrender, but didn't seem quite ready to actually surrender. I think I'm being invited to next steps in the actual surrender, not denying or giving up what I want, but holding it differently, and allowing disappointments to help me to fall with trust into the love and grace that is much larger than what I want.
At the gathering we had a week and a half ago in support of my healing, we sang this song together:"Love prepare me to be a sanctuary, pure and holy, tried and true.
With thanksgiving, I'll be a living sanctuary for you."
I can still feel anxiety running through my blood stream about fluid leaks, infections, and more--but I also feel more held by God in it all at the moment, and invited by God into some new rooms in the Interior Castle that I mentioned in my last post. These rooms are ones where feeling my weakness or feeling knocked back lets me rest more deeply in God. In these rooms, my not knowing what will happen tuns me towards mystery and awe. I am held in the arms that I totally trust, knowing those arms are friends and care givers around me, who are themselves held by divine arms guiding them. As I have been feeling pretty good recently, I've been trying to be clear about my intentions, and how I want to approach healing. I trust there will be many times when my healing isn't about what I'm doing, but simply being carried by love and by many of you. I give deep thanks for the ways you are carrying me now, and the ways you will in coming months.
P.S. We just got back from the surgeon's office today. They put in another stitch in the surgery incision area, hoping that will stop the leaking of the fluid--and they postponed the radiation and chemo until at least this coming Monday, to give it time heal. Here's hoping that works!
I'm planning to start radiation and chemo this afternoon. In writing this, I want to clarify for myself, and let you know, how I'm doing as I start treatment and talk about the larger picture of healing that I want to see this treatment as a part of.
First, something to celebrate. I had lost weight since this all started, and in the past week and a half, I've gained back 10 pounds, so I'm close to my normal weight. Thank you to all of you have been showering us with tasty, healthy, fattening meals! It is working! Keeping my weight up is quite important for the radiation and chemo.
I have written a lot here about gratitude, which is what I have felt most deeply in the past weeks, but I also want to acknowledge the swirls of anxiety, fear, sadness, and anger that move though me. It is often triggered by relatively small things, like how I felt more fear of the pain of getting my stitches out last week than I did about the brain surgery the week before, since I was asleep for the surgery. I can then get stuck in a puddle of anxiety for a while.
A week and a half ago, the oncologist told me and Jenny that 50% of people with this kind of cancer die within 18 months of diagnosis, some much quicker that that, some longer. My primary doctor says that because I'm young and healthy and because the surgery went so well, my odds might be better than this. At first I wanted to avoid this information about odds,and focus instead on savoring the present and doing each next step in healing. I still want to focus intently on those two things, but I also don't want to run from the information. I want the seriousness of the prognosis to open me up more fully to the transformative nature of this situation. I'm a different person now than I was 3 weeks ago, and I'll never be back to the normal of before that. I'm being invited into a new vocation and new kinds of relationships. I want to honor and embrace this.
In the last few days, a little spinal fluid has leaked out of the surgery incision on my head, making a little swollen bubble behind my ear. This also freaked me out for a while, although the doctors say it probably isn't a big deal. It has been a reminder of the countless possible symptoms, side effects, and potential loss of functioning on the horizon. I think it is pretty miraculous that my surgery went so well, and that I still have full physical and mental functioning. I'm very open to miraculous recovery continuing without any damages, and I also want to be open to living even more fully with different abilities. For now, I'm delighting in being able to talk, walk, see, hear, write, read, feel, etc.
In the time since the surgery, I've moved often between the heaviness of the medical information and the intense lightness and happiness that is also often with me and around me. The heaviness of medical information--like the information that, statistically speaking, my life will probably be much shorter than I expected, and that I know what I'm likely to die from often pulls me into living in my head and anticipating future scenarios.
At the same time, I've never felt more depth of joy than I have in the past weeks. A few days ago, I took a long walk in the woods with Isaiah at Afton State Park. As we walked in one of our favorite places, we talked about mortality and loving each other well. After that, I cuddled with Grace in our yurt at the park, as Grace made up a story about 2 kids who invented a machine that got rid of all the brain tumors in the world. Last night, the Morning Star Singers came to our house, stood around our family, and sang joyful songs of healing to us. With many friends, I have had the most connected, sacred conversations we've ever had in these past weeks. I don't want to choose between the heaviness and lightness. I want to integrate them and allow them to deepen and open each other.
While I'm delighted my brain surgery didn't seem to take away any of my functioning, I had quietly hoped that the surgery would remove a few extra things with the tumor. I'm still addicted to constantly checking email. I thought that might go away. Really, to be recovering from brain surgery 2 weeks ago and still be trying to always have inbox zero, that's crazy. Still annoyed by loud chewing sounds, and when people don't hear what I say. I thought it would be OK if those parts of my brain went out with the tumor.
The radiation and chemo treatment is a little less targeted than the surgery. I want to see this treatment a a part of a broader step in healing, not just killing cancerous cells.
In the beginning of this year, I joined a small group focused on healing that my friend Janet initiated. I wasn't sure why I said "yes" to it at the time, because I didn't see myself as a "healer," but the reason I'm a part of the group is clearer now that I'm on this adventure. The main image in the group is of those of us in the group as candles, circling and growing closer to God's flame, becoming more able to allow God's love and healing to flow through us--to move closer to the source of life and healing, and remove the barriers that allow it to move through us, for our own healing, and for others.
As I start radiation and chemo, I want this to be the main image I have for what the treatment is contributing to. I image the heat and power of the radiation and chemo working in service of that fundamental flame of healing, melting away what gets in the way of life and healing flowing freely through me--cancerous cells, and also fears, unhelpful ways of thinking and acting, cancers in the world that I contribute to, like poverty, racism, and climate change--and mostly opening me up more completely to reflecting the power of God's love.
I still want to take breaks from moving closer to this flame--times of standing under cleansing, soothing waterfalls, as you've been helping me do int he past weeks. I want to continue to feel the ways water, natural beauty, and connections with you cleanse and wash away tumors and other extra clutter.
Each time before I do radiation, I'm planning to do a little communion-like ritual, where I eat a prune and remind myself of the intention for God's love to burn and poop away all that separates me from love. In my work, I'm often listening in organizations and communities for what is being born and what is dying, including which habits would be good to help die, to make space for new life. Now I want to pay attention in that way to my own body and spirit, welcoming dying and letting go of what needs to go, and cultivating new life within me. I want to notice and follow more clearly the energies inside me that lead to life, death.
How much time? What kind of time?
The ancient Greeks had two words for time, chronos and kairos. Chronos refers to chronological or sequential time, and kairos signifies a time lapse, a moment of indeterminate time in which everything happens. In a Biblical context, kairos can also mean "the appointed time in the purpose of God", the time when God acts. (Wikipedia) Kairos is the "fullness of time," God’s time zone. Kairos time conveys notions of unboundness, of fluidity, of God’s purposes intersecting and overruling this finite world of chronological time. (www.gci.org/gospel/time)
In kairos, the difference between 3 months, 18 months, and 1,000 months might not be that great, but how fully we are living in this moment, and how fully we are living out our purpose for this moment is everything. I definitely want to live for many years, but more that that, I want to live with a foot always in kairos time. To me, the foundation of this is cultivating intimacy with God.
From the start of this health adventure, I said I wanted this adventure to cultivate Intimacy with God. What does that mean? I know it is hard to relate to for many people, including me much of the time. I really appreciate the generosity of spirit those of you who don't think about the world in this way have offered to me as you seek to understand and support me, even though I am more religiously oriented than many of my friends. Intimacy with love is a close translation for me, but the "God" part does have additional meaning to me too. Thank you for doing your own translations to have it be meaningful for you.
One way I've started to understand what is possible in intimacy with God is through intimacy in some particular relationships in my life. I know I have just dabbled in this intimacy. Now I want to dive deeply into it.
Before Jenny and I got married, we talked about how we wouldn't have any loop holes in our marriage--that we were fully committed to growing together in marriage for all of our lives, no matter what. I believed Jenny at the time, but I didn't fully understand the depth of her unconditional, committed, loyal, and expansive love for me. There has never been a moment in the past 17 years when I have doubted the presence and commitment of Jenny's love and support. This experience has helped me imagine and experience a more universal unconditional love that I can trust and lean into at anytime, not just in my relationship with Jenny, trusting the reality and accessibility of this quality inside myself, in others around me, and in the universe as a whole.
Since my diagnosis, I've found an intimacy with both pain and awe through my friend, Janet, that I didn't know was possible. I feel Janet so fully with me in both what is scary, and also in noticing and receiving the amazing gifts being showered upon me. Janet helps me see and name the sacred gifts that keep showing up every day, and we savor them together, listening for where they are leading. Knowing this with Janet has helped me see and trust this wisdom and presence that are always available, even when I'm not with Janet, trusting more that there is an inward teacher and a way these gifts are being orchestrated in the universe, even when I'm not paying attention.
My sister, Christy, was here visiting from England the past 2 weeks. As she would massage my feet, I would feel how deeply we belong to each other, knowing how much she loves and is committed to my children, to Jenny, and me. Knowing this belonging together with Christy has helped me breathe in more of the ways I belong with God, knowing how interconnected and committed it is possible to be.
My Mom, for many years, sacrificially did what was needed to be done for our family, as my father was sick for many years, and she found joy and renewal on the other side of this sacrifice. Seeing her example, I trust more that sacrificial service can lead into joy, and know that deep transformation is a gift God offers all of us.
Because of the ways my friend, Janne, powerfully and happily mobilized financial support for my family in the past weeks, I more fully trust that the power to change the world in loving support is available in community, even when Janne isn't around. Even though Janne doesn't think about this in terms of God, I don't think that diminishes the universe-changing impact of her generous way of being.
There are many more examples of relationships that have opened up possibilities for new kinds of intimacy with God. I look forward to letting my imagination, emotions, body, and mind see, feel, and learn from these aspects of the universe.
I've started to read Teresa of Avila's book, The Interior Castle, as another way of learning more about different kinds of intimacy with God. There are a coupe rooms in the castle I've visited for the first time this month, and so many rooms that I haven't visited yet!
Your companionship through this process is more valuable than I can ever express--your messages, your meals, your errands, your prayers, your love for me and my family lift me up many times a day. I look forward to the next steps with you.
We had a week with just one few doctor visit and time to rest, plus lots of family visiting. We've enjoyed spending time with Christy, Michael's sister, here from England with her husband, Harry, and sweet kids, Michah (4) and Alma (1) -- plus Michael's mom, sister Sharon and her husband were here for a few days from Missouri. Christy's family heads back home tomorrow.
Our family spent last night in a yurt (little round cabin) at Afton State Park, a reservation we'd made long before all this, for time when the kids were off school. It was heated with a wood stove and we didn't stoke it overnight -- it was pretty brisk this morning with outside temperatures around freezing. The woods were gorgeous, we had a long hike, and Christy and family joined us for part of the afternoon. It was good for our family to spend some time in one of our favorite places.
I'm posting a few photos from our time at the park, including one of Isaiah cooking our food over the fire. When we camp, our usual is to cook veggies wrapped in foil in the fire -- this was the first time Isaiah did all the cooking himself. He did a great job!
Micheal had his stitches on his head out on Wednesday. He and I walked to the appointment, almost 5 miles round trip on a beautiful fall day. We stopped to play a toss the beanbag game near the hospital (see photos). Radiation and chemo start on Monday. He'll have radiation every weekday for 6 weeks and will be taking a chemo pill every night during that same time. Thanks for your continued prayers and love.