Friday, July 1, 2016

Pain

It feels good to write again. I couldn't while I was in post-surgery pain. There are times when you just move through things, without a wish to describe them. I feel there's a real obligation to keep loved ones posted during a difficult time, and I tried to with a few emails to family and nearby friends. But in as much pain as I was after pancreas surgery, I was not blog-worthy. All of my attention was on moving through each moment. Also, opiates make it hard to think.

I like blogging. But stopping, I realized I'd been harboring the illusion of an audience to whom I owe a performance of this time. Something similar maybe to my friends who blog or post a lot, and have come to imagine their own audiences through social media. Facebook and Twitter and Snapchat and blogging are such good connectors. They can also foster a feeling of imaginary responsibility to report our lives to everyone we know. I notice this especially when one of us makes a post just to say we will be taking a break from posting for a while... as if we are explaining our absence from the stage in a packed theater. When we start thinking that everyone in our digital network is expecting to be entertained by us, we've entered a realm of mild delusion. Everyone is living their lives. No one is waiting to be entertained. I reminded myself of that when I got nervous about a long stretch without making a post.

I was told to expect a lot of pain after open pancreas surgery, and that it might last a long time. Hospitals talk about pain along a spectrum. They ask you to give it numbers, and for about three weeks after surgery, I was between 5 and 6. You are supposed to take enough drugs to keep the numbers lower than that, but opiates made my chin fall to my chest and dream while I was awake, and since I was supposed to be moving around and eating to recover, they advised taking smaller doses. That meant I was in some pain. And being in it required me to be very present. For a while, each thing I did was all I was doing. When I was figuring out how to walk upright again, I was walking. When I was stretching the surgery site, I was stretching. When I was starting to eat again, I was eating. When I was moving from lying down to sitting up, that is what I was doing. Some days, it was too painful to sit, stand, or lie down, and so I kept moving gently from one shape to the next, responding to any new need for change. There wasn't energy left for reporting or describing the experience.

This was good for me, to stop describing and just be. Walking outside each day, I remembered how to be with the light and the wind and the grass and the leaf shadows and the pain and love and just have all that, without wrapping it up into something pretty to give to someone else. I remembered that it is maybe enough for me to experience my life, without having to present it publicly. But beyond that imagined pressure to report, I also really love to share experience. Things happen to me that I find inspiring and catalystic, and my joy in art has always been sharing them. And so much happened during the time while I wasn't writing... things astounding and beautiful... that I started to feel like my arms were piling up with gifts I wanted to give other people, but I couldn't give them because I couldn't write. I've wondered what I could finally make out of all of this experience, and I shared this question with my friend Erin the other day. She answered, fast and direct, "You make your life out of it. They are your experiences. Let them make you." A small, haunty part of me has believed that absorbing and being made by my own life experiences is selfish. That part of me had to be broken, and pain is what broke it.

Flying

It seems like surgery is something people have as a matter of course in our culture now. A part isn't working and we get cut open to have it repaired. It can be a radical, life-improving, and life-saving intervention. A lot of people even have elective surgery. I don't know many people who opt not to have it when they can. I also don't see a lot of people talking openly about their experience of surgery itself. Their recovery, or their fear, or the pain, or the experience of having their own body sliced apart while they are drugged and unable able to remember.

I don't know if this is because surgery doesn't faze people, or if they just pretend that it doesn't. It definitely fazed me. I feel similarly about flying in airplanes. Some people travel 30,000 feet above the earth, and never look out the window. They look forward, reading a book, acting like they're on a bus. If there was more reckoning with the reality of the situation of being that high above the ground, there would be more tears, more awe, more fear, gratitude and astonished wonder. Deeper friendships would be made, more strangers hands would be held, more profound conversations would be had. Bullshit problems would be put into perspective, and things that don't serve us anymore would be let go of at 30,000 feet up in the sky. I only fly when I'm prepared for that kind of emotional ordeal, because I can't help but notice what is happening. I suppose I related to surgery a lot like I relate to flying. It felt big to me, to have my abdomen cut open, and my organs sliced apart.

I was informed at a follow-up appointment the other day that my insulinoma was life-threatening if it hadn't been surgically removed. It's danger is different from the way cancer threatens a life... insulinomas are benign, not malignant, but they create a dangerous endocrine/hormone/blood sugar imbalance that can lead to death. This is something I had gleaned from things I had been told along the way, and something that I felt pretty clearly in my body, too. But when you have something inside you that can kill you, and you're doing your best to find help for it, it doesn't help to think about that all the time. I don't know for sure if surgery was my only option. I was told by every doctor that it was, but I know from my own life experience that that's not always true. Sometimes healing happens without medical assistance, and sometimes there are different approaches. Maybe some alternative healing modality could have helped me if I had immersed myself in it whole-heartedly. Or a new, less-invasive medical treatment would have come along if I had waited a few more years. But I felt that surgery was the right thing to do at that time that I did it. The way the insulinoma effects energy, I didn't have enough of it to put towards a more rigorous healing process, or wait around a few more years. I needed help at the time that I got help, and I am very grateful for it. Surgery with Dr. Fong seemed right, and felt like a part of my story. It felt like home.

But having and recovering from open pancreas surgery... it was a thing to reckon with. And fortunately, my surgeon was also open with me about that. Being the most emotionally intelligent person I've met, he talked about it in a way that both informed and prepared me for what was to come, but did not terrify me. He talked about it as a necessary intervention, and one that would help greatly. He talked about his approach in a way that I would have scripted if I could have, which at the end of the long, seemingly hopeless search for a surgeon, had me wonder once or twice if he was real. He told me frankly that it would be traumatic; that open organ surgery was something like being attacked by a saber-toothed tiger (not just any tiger). That important parts of me would be wounded, and that during the healing process I could feel a lot of pain. That for many weeks afterward, I might also feel cold, and very tired, and not hungry, and that all this was normal, as my body would be using all of it's energy to heal and repair. This made sense to me, and knowing it comforted me when I felt all those things in the weeks that came.

After

When I was first out of surgery, my eyes frightened me. I hadn't looked in a mirror for 10 days by the time I passed one in the bathroom and looked up. I looked different, but not just in the way of having bed-hair and pale skin. My face looked like a tiki; long and hard and stoic, and my eyes looked scary and far away. Like they had seen something I couldn't remember. Looking at my reflection was like looking at someone else. Someone who had experienced something traumatic that I couldn't understand.

By the time I looked in the mirror, I'd been in the hospital for 5 days, and in Hope Village for another five, on a ton of pain medication, not sleeping, and with the most pain I'd ever experienced in my life. I was hunched over because the fascia around the surgery site was constricting, and it pulled me into a forward arc like a willow tree. I was starting over again with a lot of things. I was relearning how to eat, how to breathe, how to poop, how to pee, how to cough, how to walk upright, how to sit down and get back up, and how to sleep.

I had one moment of remembering the surgery itself. I think. A couple of weeks after it happened. It was a quick, silent flash with a perspective of laying on my back and looking upward, surrounded and leaned over by dark figures above me. The image was dark and bright, like an impression burned by a bright flash. It came as I was falling asleep one night, and I politely said no thank you and it faded away. 

I woke up from surgery with a scar down the middle of me, from about the center of my breastbone to just above my belly button. For a while, as the layers of tissue were healing, I couldn't feel myself as a whole. I felt myself as two separate pieces, and couldn't feel a middle. Not wanting my fear or disgust, the scar didn't want to be seen by me for a few days, so I let it heal in privacy for a while. When I finally saw it, I was proud of it. It marks the site of a heroic rescue. And the effort of it's mending feels like love and courage to me. I marvel at it. 

I also woke up with a drain in me. A soft rubber-like tube that left a hole in the right side of my abdomen and led to a drain bag that I wore strapped to my thigh like a sexy, sexy garter belt for 5 weeks. The drain was there because I had a pancreatic leak after the surgery. This is a sad thing to have happen in a body. And it can be a dangerous thing, which is why the drain is put in place: to remove leaking digestive acid that can harm the other organs (Dr. Fong says, "Don't call it acid! Call it juice! That's way less upsetting."). A leak is unfortunately also a somewhat common thing after a pancreas operation. Pancreases are delicate creatures that do not like to be touched much less sliced up, and they can take a long time to recover. The leak in mine felt like it was crying, and it continued to cry for many weeks. The weeping made me tired, and sad. I was sad that it continued for so long. Every day for five weeks I emptied out a bag of the tears, once in the morning, and once at night. 

Here is a letter my friend Kelly wrote to my pancreas after it had been crying for three weeks:

Dear Pancreas, 
Can I call you Panny? Is that okay? 
Panny, you've had a rough go and I'm sorry that that's the case. Janna has worked really hard to take care of you for a long time and she cares a lot about you. I do too. Everybody who loves Janna also loves you. I'm thinking you're probably not on Facebook, so maybe you don't have firsthand experience with how much Janna is loved and by how many people, but take my word for it, it's a lot. And all those people love you too. We're rooting for both of you.  
And we're sorry that you're hurting and that you had to get poked and snipped at. Janna went to great, great lengths to find you the very best, most skilled, and most loving surgeon to do that poking. She did that because she loves you. She is anything but cavalier about you, sweet Panny.  
So I'm asking gently, on Janna's behalf, and on behalf of everyone who loves Janna, to please start healing up. Janna needs you, and you need her too. She's on your team, and you took one for the team, but Janna needs you to forgive her for the poking so you can both get on with more fun things, like visiting the Bean and splashing in puddles and telling stories only the way Janna and you can.  
We're here for you Panny.  
Lovingly,
Kelly

Maybe it goes without saying this letter made me cry. And at a point, it started to seem like the more I started to cry, the more my pancreas stopped crying. Before I went into the hospital, a dear friend who I admire for being easy to show emotion told me that when he had a major surgery, he allowed himself to put emotion on hold until he got out of the hospital and was in less pain. I found this to be very valuable advice. I was in survival mode early on, and tears could come later. Kelly's letter helped get them flowing again. As did a meal I was eating one day around the same time. I had noticed that any time I ate after the procedure, my left middle badly ached, with a whining, heavy, sour pain. And it occurred to me that day that this was because eating asked my pancreas to work. To produce insulin, and digestive acid, and just generally resume it's active role in my digestion while it was still bloody and wounded. This brought on a big cry. Not with regret or despair, but with compassion for the little organ I hadn't known before. 

I never felt or knew where my pancreas was located, and with that lunch I suddenly knew what part of me had been sick, and operated on, and was struggling to heal. It is a very gentle part. My pancreas is the part of me where I have felt the physical impact of emotional pain my entire life. When I have been heart broken by a friend or family member, I have always felt the pain of it in a specific part of my body, near center, around the solar-plexus and above the diaphragm, a little to the left. When I've felt the strange electric energy of aggression from another person, that's where I've felt it too. When I've been emotionally agitated falling asleep at night, I've felt it there. But I didn't know what that part of me was called, or even that it was an actual, physical part. The localized pain of surgery had me realize that the very place I'd been operated on was that same emotionally impacted place. As I sat there crying over some bland vegetables and low-fat protein and my sweet Mom tried to comfort me, I kept saying to that part of my body "I'm so sorry... I'm so sorry." 

City of Hope

When the pain started lessening after the third week, I was beyond grateful. There had been a three-week stretch of no improvement and the first sign of improvement was elating. Even a small amount of feeling better. Because it allowed me to sense the positive trajectory. I still am in a certain amount of post-surgical pain, and on pain medicine after a recent complication (I'll mention in a bit). But I am completely off of the narcotics, and taking far smaller amounts of medicine than I was before.

After I got out of the hosptial, I stayed in a little apartment on City of Hope's campus in order to remain close to the hospital during recovery, which was helpful during the few complications. The apartment was really a little cottage in the middle of a grassy meadow surrounded by giant, old trees, sculpture gardens, a rose garden, a library, a theater, and a long row of short trees covered by rainbow colored tags that had people's wishes written on them. It was a place that made me want to get up and go out side. And every day I made it a point to do so. I walked barefoot because I couldn't bend down to put on my shoes, and the benefit of this was getting to walk barefoot in thick, cool, green grass. This is what I remember most from the second and third week. My feet in the grass. Relearning how to do all of those basic bodily things made life feel like a clean slate. Not having the mental space for many of my old habits of thought, felt like an emotional clean slate as well. Those barefoot walks in the grass were a good part of that beginning.

As the fog of the drugs wore off, I began to blink and look around at where I was. City of Hope is not a place I sought out, or knew anything about at all before I got here. I came because of Dr. Fong. But what I saw when I began coming off the drugs is something that I am still marveling at and learning from every single day. I didn't know that there was a place in the world like this, much less a medical center, and forever after I will be recommending it to people who experience a time of significant physical crisis. 

Walking one day in a garden that holds statues of icons from many major religions, I came across a large golden gate that is free-standing without any fence. Just hanging open along one of the paths. The metal gate is made up entirely of carved letters that read "There is no profit in curing the body if, in the process, we destroy the soul." And anyone who has been through an experience that has led them to seek help from a medical system may know how radical this statement is. Asking around, I learned it is a quote pulled from a founding document of the institution called City of Hope's Thirteen Articles of Faith. Strangely, copies of this weren't easily available, but I got one through the help of a librarian who made some requests and found me a copy. From there, I learned about Samuel Golter, the founding executive director, and his book And They Called it City of Hope. The book, too, is out of print. But I was given a copy by the librarian, and it is one of the most beautiful human documents I have ever read. It is the story of the creation of a place intended to provide loving, respectful care and human dignity to people living and dying with Tuburculosis before there was any cure. A place founded on the idea of "Man's Humanity to Man" during years when man's inhumanity to man was on full display on the world stage. It is a story of a place shaped directly by two world wars, massive influx of immigration, unionized labor, an early and prescient valuing of the diversity of culture and religion, activism, humanitarianism, and a world-wide movement based in the Hope that people really could be good at heart, in spite of so much evidence to the contrary. 

Up until the mid-1980s, for over 50 years, City of Hope's services were completely free. Beginning with a radical mission to provide loving care with dignity to individuals in times of "catastrophic illness", without burdening them with any financial hardship, the early leaders of the hospital, and Golter in particular, created an international fundraising effort that invited people to contribute to something with a wholly generous spirit. Against the heartbreak of two world wars, contributing was a way for people to show their own gentleness and humanity, and to demonstrate their hope for more of the same from the world. This patch of ground in Duarte, California began as a row of tents where sick and dying people went to sleep for free and be treated with kindness. And solely upon the wishes of the hundreds of thousands of people who have contributed to it from all over the world for the past 100 years, it has grown into a place where the most current research and techniques and doctors are offered to people in times of great need, still with the same dignity, kindness and respect that were offered before any cures were available. 

Walking on ground like this, in a place that was built by the generosity and volunteerism of so many people, is quite a thing. It feels different, soft, and clear in a way. And it felt like that before I read about it's origins. The people who have known and helped me here are like the people Golter dreamed about. The difference between this and most any other hospital I've visited, comes down to the simple fact that the people here actually care about me. Not in any fancy way like having posters on the wall about Patient-Centered Care, or using conversational forms they've been taught to make a person "feel listened to". They are just people who actually care. From the security guards to the administration to the nurses to the doctors to the librarians, they are people who don't pretend authority or superiority. Both of which are tiring, and not conducive to health. They just offer great skill and kindness. Which is a relief.

A strange thing I discovered is that almost none of them have read his book. Which is amazing to me. Sad and also beautiful. It's like his spirit, and the spirit of everyone who gave with all of their hearts to those in crises, is still alive and well, and guiding the behavior and actions of the people in this institution. As a gift to everyone who helped me here, I printed and gave them each a copy of the book, telling them I wish that Golter could see them, to know that his dream is still living. 

Peacock

In keeping with the magic of the campus, two days after I began walking outside in the grass, a royal peacock showed up to keep me company. I was standing with my eyes closed one day, stretching my abdomen open on the deep blue powder-coated rehab equipment in one of the parks, willing myself (poorly) towards the shape of a mermaid on the bow of a ship. Because of the fascia around the surgery site pulling me forward, I'd been instructed to do this mermaid stretch a few times a day. Just like my Dr. said, the stretch always really hurt when I did it, but I always felt much, much better afterwards. With my arms back and my belly painfully stretching forward, I opened my eyes, and right in front of me was the ridiculous, giant, beautiful bird. 

In the coming days he sometimes sat with me in the grass. Or, I sat with him, making my way towards where ever he happened to be snuggled up and resting in the soft green coolness, and kneeling into a sit so that we could share a little bit of the day. No one around seemed to know where he came from, but ten miles away there is an Arboretum filled with wild peacocks, and so people pegged him as a wanderer. After the long journey, he seemed to be content with his environs, and stayed around City of Hope for a couple of weeks. The people in the apartment offices named him Hope, and I was reminded of Emily Dickenson's poem that begins, "Hope is the thing with feathers... ". Neighbors often saw him posed in positions of prominance that looked like he was staging his own presence. On the very corner of a rooftop, atop a boulder on a street corner, framing himself between two coloumns on a wall. It started to seem to me that he was aware of his appearance and I wondered about that. If any animal would be aware of it's own visage, it would be one who had evolved over time to have such an elaborately gorgeous physicality. How could they look like that and not know it?

Beyond that, I began to wonder if he was aware at all of what his presence meant to the people here who were recovering. It seemed to me like he might. This feeling was encouraged after he hadn't been around for a few days, and I asked the Village office if they knew anything about him. The woman there told me they heard that he'd moved on to hanging out around the surgery center, and in the busy areas around the main hospital. She told me that just the day before, he had walked up to the (unfortunately named) Helford Hospital, and crossed the busy driveway where multiple cars are always dropping people off, vans picking people up, and chairs being wheeled in and out. He walked to the front doors of the hospital, and being automatic, they opened for him. Then he fluffed himself out and walked into the waiting room downstairs, to stand with the people who were awaiting surgery. That was where he went, and perhaps... perhaps?... with some awareness of the impact of his magical presence, where he chose to place himself. 

Can you imagine preparing yourself for one of the most important, frightening experiences of your life, during one of the hardest times of your life, and have a peacock walk in the door and join you in the waiting room? Can you imagine how that would feel? Or trying to tell the story of it later?

People

I have come to believe through this entire journey that love is the one salve, the one action, that can make anything better. This search was necessarily one that I had to make alone, given the circumstances of my life. And perhaps, given any circumstances. Even if I had been married or had children at the time when I set about looking for a doctor, I couldn't have asked anyone else to leave their jobs or schools and travel with me for 5 months. I was willing to accompany myself, and others accompanied me by supporting the search.

Once I was here, preparing for, undergoing, and recovering from surgery, the presence of loving friends and family was everything. I won't name people here, because I have a general practice of leaving the people in my life out of this blog, other than an occasional praise. And also, I know that if I tried to say everyone's name who lifted my spirit with company, phone calls, a night or a week spent during recovery, sweet visits with laughter, a run to fill a prescription, a card, flowers, a GIF, an email, a book, a facebook message, prayers, thoughts, good energy, or a contribution towards the expense of this time, I could not do it. If you ever reached out to me, in any way that seemed large or small to you, please know that it was large to me.

For the people who extended themselves in significant ways to help me find a doctor who would preserve my organs, or who kept my spirit up at some point along the way, or who helped me recover from surgery, I hope to have expressed, and I hope to keep expressing my gratitude to you personally and directly. I hope you know that you helped me get well.

Love like this is a big thing to reckon with, and it contradicts a million messages I received from my culture growing up about independence and isolation. In this country, we have a million different ways of relating to loved ones in times of need, that seem to me based as much in economic class as in cultural differences. Growing up in a white, middle class/working class, inter-cultural family, my own feelings about this are confused to say the least. I crave company and community, and am ashamed of my need for it. I think the craving for community equals weakness, but contributing to it equals strength. I know I need other people, and I believe that no one needs me. I like to give and be giving, but I can also feel panicked and worried by being called on. I think I am selfish and greedy when I ask for presence or support, and believe I am dysfunctional and self-isolating when I don't ask for it. Perhaps because I can only feel like I can only do wrong in this regard, and all my actions are equally weighted with shame, I made choices that just seemed best in the moment, since no matter what I did, it wouldn't feel right. The grace and ease that people met me with is still something I am wrapping my head around, and still striving to learn from.

Setback

A little over two weeks ago, I was scheduled to leave Hope Village, and looking for a place to remain in LA for the last 3 weeks of my recovery. I had been getting stronger, exercising well, and was in so little pain that I was almost off of pain medicine entirely. I still had the drain in my body, and because the fluid finally looked clear and I seemed good, they decided to take the drain out. Removing the drain caused an injury that was not understood for three days, and resulted in more pain than I had at any point after the surgery, or in my life. The pain was like shattering glass on the inside of my right abdomen, below my rib, and up into my right shoulder. I was put back on the full course of the highest doses of the pain medication I'd been on directly after the operation, and it did not even touch the pain. I couldn't breathe, burp, talk, or move without blinding pain, and had episodic contractions that had me on the floor unable to get up several times. I couldn't sit up out of bed without help for a week and a half. I won't write about it more because it was just over two weeks ago, and I don't like to remember it.

But I'll just say it set me back some, and they extended my stay at Hope Village. I am now feeling much better, which I am INCREDIBLY grateful for. After three days of tests they diagnosed the pain as damage to the diaphragmatic nerve, which occurred when the drain was removed. They put me on a big medicine that was especially for that, and only safe to take for five days. The words 'nerve damage' were concerning, and I was full of hope that it would not be permanent or long lasting. The pain is not gone yet, but it is so much better, and again, this progress is everything. Just knowing that things are on a healing trajectory is the best thing.

I don't know where I'm going next. I wasn't able to make it back to teach for Term 4, so I'm set to return in Term 5, starting on August 20th. This gives me a month and a half where I don't know where I will go or what I will do (with no income I am continuing to sublet my place in Chicago). And this is okay. It's a little scary, but I mostly only feel uncomfortable when someone asks what I am doing next and I tell them I don't know. After I say that, they ask me again. And when I say I really don't know, they ask me one more time. Reading their dismay, I become dismayed myself, and apologetic. But when I am alone, I feel okay about it, and even a little bit excited. The unexpected open time is odd, but maybe it is a gift. I hope that I may get to spend some time rehabbing emotionally and mentally as well as physically.

This whole journey has been filled with uncertainty. And much worse uncertainty than figuring out where to spend a month and a half continuing to recover. I'm looking into meditation and retreat centers that may offer work-exchange or scholarships. I may visit family or friends. I don't really know. I have today and tomorrow to decide, as I am scheduled to leave here on Sunday. And it's okay. What I have learned, through this time, and through my life, is that the very best things are often waiting on the other side of uncertainty, when I can be willing to bear the not-knowing. Sometimes the best life doesn't come through strategic planning, but through trusting enough to proceed without knowing what comes next. I like life like that. I like it better than clinging to the rocks.

Strangers

I want to say something about the people I have met a long this way. The strangers and new friends in Portland, Seattle, Rochester and Los Angeles, and during every distance in between. I don't think, though, that I am ready to do it here. There is so, so much. There are people like prophets and sooth-sayers, guides and angels and old friends. The people I have met have stunned me, and lifted me and changed me. In their wake, I am still changing. This is the place where I feel the strongest wish to share something I've experienced. I want you to have these people like I had them. Or have the gifts they gave me. I don't know quite how to do that yet. In Chicago, I use the show I produce, Here Chicago, to do this; to introduce the amazing people that I meet to one another. Traveling, I'm not sure how. If I were to just start writing about all of these people here, this post would become a book. There will be a way. I'm just not sure exactly what it is yet. 

Thank you for reading. My love and gratitude and good wishes to anyone who made their way here. <3

2 comments:

  1. Love is the most important thing.
    This story makes my heart break and swell up for you at the same time. You are very needed! Thank you for sharing this, and if you find yourself back in Chicago still without someplace to stay, please let us know!

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    1. Ren, thank you for this! You are the sweetest. I don't know from your blogger name or photo if we know each other personally. If we do, will you give me a hint? If we don't, still, thank you for your comments over time. They always really make me smile. <3

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