So much has changed, so much has not...

I’m Preparing to Die

I’m preparing to die, the very process of which is preparing me to live.  Each day is precious, each moment is pregnant with divinity.  All is bursting with holiness, all is sacred…  When these words seem like platitudes it is time for me to be alone in the mountains…or the desert.  Beauty and death, glory and shame, majesty and emptiness, they are the two most common doorways that open our eyes to the Real...though sadly the later is more frequented than the former.

For me, cancer is a doorway, as is all suffering.  It is the gift I wish on no one and yet it bears blessings that would be accessible through no other path.  We can dread the pathway, complain about it, ignore it and keep a “positive” attitude…none of these will bring us through to the other side.  The only way to reap the benefits is to fully enter the shit.  The only way to keep it from killing you is to allow it to kill you…today, it is killing me.

It has been said that he who saves his life will lose it, and he who loses it will find it.  It is the paradox of paradoxes, and yet experience shows it to be true.  Just as when we hold on too tightly to our possessions, they end up possessing us; when we hold too tightly to life itself, we are never able to be fully alive.  Only open hands and open hearts can receive the gifts that are all around us. 

These words are true, only the depths to which we experience their truth varies…

You must try this for yourself…I wish we all were to be as blessed as me right now.

So much has changed, so much has not...

Today I experienced the medical version of “good cop bad cop.”  There was no full body search, but that might have been preferable.  All in all, it wasn’t a great morning in the news department.  

When we sat down, my first question was how much time Dr. Thompson had set aside for our conversation.  He had 15 minutes... 15 minutes?  Really?  Gratefully he stayed a few minutes beyond that, but at the end of the conversation I see why the system had such a limited amount of time for me...when there is really nothing that can be done, there is little to be said.

The CT scan I had yesterday was largely ok; there was one 7mm spot in my liver that looks harmless, but the CT scan often picks up on little spots like this that have nothing to do with cancer.  We’ll look at it again in 3 months when I redo the scan.  The tough part was that in my meeting with Dr. Thompson we learned that my cancer is stage IIIc not IIIb, largely because of the lymph nodes that were matted together in the 2nd tumor.  Dr. Thompson was also concerned about the fact that the tumor had grown beyond the “walls” of the tumor and into surrounding tissue.  

Stage IIIc is a much worse prognosis than IIIb and Dr. Thompson is not optimistic. There is no currently approved treatment he can offer that will extend my life.  He is aware of one clinical trial I might be able to get into, but even that doesn’t sound very promising to me.  I left that appointment very shaken.  Jamie and I sat for over an hour waiting for the next appointment and the gravity of everything rushed forward...yes this is really happening... and all too quickly.  

Hours previous I was wrestling with my kids, playing golf and volleyball with family, and swinging out like Tarzan (OK a wounded version of Tarzan) over the Walla Walla river.  How quickly the impact of a worse diagnosis brings Death slamming back to your world.

Dr. Byrd, while he agrees that I’m technically stage IIIc, doesn’t think that I’m a “bad” stage IIIc.  In other words, he feels that there are many stage IIIc people who are far worse than me.  As a result, the statistics (which are after all simply averages) that apply to stage IIIc include people worse than the average IIIc, and he feels I’m an “above average” IIIc.  Whatever.  That might just be word games to make one feel better, but again, whatever...and I’ll take it.  Dr. Byrd is a very upbeat guy and he always has hope for everyone, even the stage IV clients he has.  You can’t help leaving the SCCA feeling much better after talking with him.  He is an awesome, humble, down-to earth guy who would be as happy cracking crab with Truss as heading some conference on recent discoveries in cancer research.

So what does stage IIIc mean?  Historically, stage IIIc people have about a 50/50 chance of making it 24 months.  We have about a 30% of living 4 years.  Push out the horizon and only 18% of people in my shoes make it 10 years.  Of course this is backward looking and it doesn’t reflect the medical discoveries in the coming years that could make all this data irrelevant.

Bristol Meyers has a drug in trials that has been extremely promising, helping 50% of stage IV melanoma patients.  In the trial of this new drug, 40% of participants saw their tumors reduced by 80% or more!  Another 10% saw their tumors reduced by some amount less than 80%.  If I can hang around a few years, there is a chance that this cancer will be cured (at least for some) with the things that are in the pipeline.  Sadly, because I’m not stage IV, this drug isn’t available to me and stage III trials are fewer and farther between.

One clinical trial I’m going to look at is a trial where you are randomly assigned to one of three groups.  Of course you don’t know which group you’re in but 1/3 get interferon (yuck--that seems worse than a placebo), 1/3 get a low dose of ipilimumab, and 1/3 get a high dose of ipilimumab.  I’m not a huge fan of ipilimumab, but it does help about 11% of people who take it...

I’ll also be looking at radiation.  Radiation will not cure me; it will not extend my life expectancy.  However it could extend the amount of time before the cancer returns and it could prevent it from coming back in my neck.  Since my life expectancy wouldn’t be improved, when hypothetically the cancer does return, it would likely be inside my body and I would go down hill faster.  I’ll have a meeting with an radiation oncologist at UW sometime soon to discuss this option.  If the side effects are too bad, then I don’t see myself doing it, but we’ll wait to decide until we talk to the doc.

If any of you ever get a type of cancer that is deadly, please do yourself a favor and give Hartmut Stecher a call.  (His website is a great introduction to what he does too.)  Jamie mentioned her in her brilliant post earlier today.  He is the person you want on your team.  In a world where the medical system has forced doctors to spend only 15 minutes with a patient, he will take all the time in the world with you.  Harmut is a former cancer researcher who was helping so many friends and family members navigate the world of treatment options that he left his post as a scientist and started a consulting practice to help people like me.  Harmut’s resume is amazing as he was the Senior Director and Head of Medical Affairs at Seattle Genetics, Medical Director at Ortho Biotech (a Johnson and Johnson company), a scientist at Dendreon focusing on immunotherapy for cancer, a scientist at UW, and he also worked for Centocor (also a J&J company) focusing on immunology.  

As an Austrian national, he is very plugged into the cancer research that is going on in Europe and in other parts of the world as well.  He will spend time researching every possible clinical trial and medical treatment (not just FDA approved options in the US) and on the basis of science, help determine which to get into.  He has taken the stress of how to navigate my care down about ten notches.  Maybe, he’ll charge me less in exchange for this free advertisement, :) but I think he is worth every penny he charges...

My friends in the medical biz have helped and have offered to help me navigate these things, and I’m very grateful for your support.  Even Reed Johnson, aka the husband of Teri, offered more than once to do the surgery for free--how generous!  While I’m sure he could have done a modified radical neck dissection as he has done radical dissections on all manner of fish, I don’t know if he could have put Humpty together again, as few of his fish have survived his surgeries.  Perhaps he could have removed my staples, as I know he has successfully removed barbed hooks from many a salmon, ah well...too late for that consideration, the staples are already out.  A latent talent might be in there somewhere, but he is rather inexperienced I’m afraid...However, he is one hell of a mortgage professional.  (425) 210-8888.  In all seriousness, I would never expect any of you to spend the hours and hours of time it takes to fully delve into my situation and consider all the options.  However, I may yet call on some of you for your aid in addition to Hartmut’s.  Reed, however, you needn’t wait by the phone.

So how to deal with this?  One strong inclination is to focus on the 18% of the people in my shoes who ultimately made it.  I’ve had several people tell me about people they’ve known who had stage IV melanoma and lived.  I know some of these survivors personally.  Even Dr. Byrd told me of one patient he and Dr Thompson had whose body was full of cancer and then mysteriously was healed...but it was only one patient and it happened 15 years ago.

Focusing on this improbable outcome is an attempt for hope, and hope is after all is a good thing.  However I would rather focus on the hope and grace that is present for the 82% of people in my shoes who end up dying.  None of us are getting off this earth alive, and if our highest hope is prolonging life here a few decades I think we’re shooting too low.

I remember when my mom had Melanoma.  A month or two before she died I had coffee with Doug Barram at the Safeway deli in Walla Walla.  He told me a story about a pastor whose wife and kids had all died in a car accident and somehow how this related to experiencing the grace of God.  He then turned to me and said, “Ned, if your mom is miraculously healed, the grace of God will be evident and present, but if your mom dies, Grace will be even more present, more real, more deep and all encompassing than if she lives.”  I wanted to punch him in the face.  Who needs a God like that?  And yet, his words ended up being true…  Mom’s death only gave me more hope, more peace, more faith, more gratitude, more love, even as it also brought deep grief, long nights of sorrow, rage, and a longing for mom’s presence.

I’m not naive enough to presume that somehow if I die, there will be this massive flow of peace and grace and healing and everyone will sing kumbaya while praising the Creator.  The pain would unimaginable, particularly for my kids.  Jamie has already talked about wailing retreats, about a season of mourning with strong and brave women surrounding her in ashes.  But I do believe that at the darkest moment, a small ray of Presence would be felt, and eventually the pain would lessen.  The sun would rise each morning, the chickens would continue to lay their eggs, our rabbit would continue to try and escape, life would continue.

Thus my hope isn’t that everything will be ok, meaning that I survive this cancer.... I am going to die either now or decades from now.  My hope is that everything will RADICALLY BE OK, regardless of the timing of my eventual parting.  In the meantime, I will do my best to die even while living.

As Rumi, the great Islamic mystic wrote:

Knock, And He'll open the door
Vanish, And He'll make you shine like the sun
Fall, And He'll raise you to the heavens
Become nothing, And He'll turn you into everything.

Sounds like a certain carpenter from Nazareth...

To paraphrase the words of Alex Rolfe, who wrote the most amazing card to us when mom died.  (I wish I had the actual text but I think it is in Walla Walla.) “It is a great mystery that someday all of us will look back on these events and feel no pain.  We will all be together, united in heaven, and no tears will fall from our eyes...”  Perspective is confounding even as it might be comforting...

Love to you all,

Ned

Feasting on filets, crabs, Wake, and life...

An update from Jamie:

Truss’s appetite is back!  After eating a large bowl of soup and a huge bucket of butter clams across the Puget Sound in Langley, our waitress was astonished to see Truss licking the dregs of juicy drippings off every morsel of shell. “He didn’t eat all of those himself, did he?” Of course he did...and they were just the appetizer... I think Truss came from the sea. He puts down fresh dungeness crab, clams, oysters, fish and prawns like his legs are hollow. 

I’m a Cambers; we use our teeth to extract crab from its shell. Truss has followed in my footsteps, although he will use a manmade tool every now and again to extract difficult morsels. During crabbing season, we buy raw chicken and strap it into the pot with our bare hands, chicken juice running down our arms. My kids are worth twenty crab between the four of them, and it is a rare occasion we don’t limit.  Crab pour out of Dad’s boat like a never ending incoming tide of flavor.  On several occasions I’ve walked our street with bags of crab under my arm offering them to neighbors.  “Do you like crab?” Their faces light up. “Yes,” they say, and then I find myself wanting to go buy the whole ocean for them.  Crab that were in the Sound yesterday, caught by my family, held in our bare hands; that crab is now on a neighbor’s table. It doesn’t get much better than that. I can’t help it--I want to feed people.

So, I guess now that that is noted, I can go back to Mr. Hollow-Legged Truss. After his soup and clams, he polished off a filet mignon with steak fries...then on the way home, he declared he was utterly famished and a stop at McDonald’s for a chicken breast and more french fries ensued. Eyes widened as he continued to devour the chicken and fries and then five tablespoons of sunflower seed butter with honey, another bowl of soup, an apple juice, bread and a banana. 

All of our bellies hurt for him after witnessing his solo feast...except for his. He picked up his shirt, rubbed his taut belly, called himself fat and with a proud gleam of accomplishment in his eye, called it a night. Fat, my boy, does not look like that. Your abdomen looks more like a piece of chiseled marble. Needless to say, our boy is happily working on regaining the six pounds that he recently lost due to a bacterial infection called Yersinia Enterocolitica. He’s also enjoying being fed probiotics in his two spoonfuls of chocolate coconut ice cream daily. I’d be willing to give him more, but he doesn’t know he has that kind of negotiating power. Right now I’d buy him the coconut farm (and hook him up to an intravenous ice cream drip for at least an hour a day). 

My other boy, Ned, doesn’t get any ice cream these days. That’s not true, actually, but refined sugar, which I use in most of our baked goods, is too friendly with cancer to remain on the menu. After receiving the most scrumptious soup I’ve ever eaten and apricot bars sans white sugar from a lovely Waldorf parent, I ordered her secret: The Whole Life Nutrition Cookbook.  Last week, with grand intentions, I tucked it under my arm and laid out a fuzzy, purple blanket where I planned on letting my eyes take in the written feast. Sixteen seconds later Timothy Thomas, our bunny, escaped and attempted to go full throttle for the street. Pier and I have our long, curved herding sticks at the ready. I had to clarify for her yesterday that they are herding sticks and not hurting sticks. After bringing hers down on one of the more uncooperative chickens, I saw further explanation was needed. The book was all dewy when I got back to it a few hours later. It was nice and straight and ironed when I first got it. Now, it has water marks on the edges. My life, without fail, always had water marks. I did come up with a moment to look at the book inside and I will likely be baking in the next week or two with dates as a sugar alternative. At least our family won’t be plugged up. Nor will you, if you come over and eat some. 

We found out recently that most melanoma is black. It appears that Ned’s melanoma continues to present atypically because his four centimeter tumor, matted together with several of his lymph nodes was white. And for some inexplicable reason, his melanoma being white puts me at ease. I’ll take it; I could use some soothing. Maybe it’s because images of angels bathed in white light on cumulous clouds are stored in my memory from Italian frescoes, or because heaven is white and airy and painless, or because I loved writing on thick, white paper as a child. Walking down the aisles of our neighborhood store, while other children were pouring over remote control cars and begging for Barbies! Batman! Battleship!, I would curl up in front of blank paper and pens and take a deep, cleansing breath. “Once again,” I would think, “I found my way home.”

Eleven years ago, when I slid Ned’s Costco ring on his finger and he slid his Mom’s wedding band on mine, I wore white. And now, over a decade later, Ned’s white extracted melanoma feels hopeful to me. His CT happened yesterday which will help determine if cancer could be growing elsewhere in his body, and then we meet with his oncologist and surgeon today to see if the word “radiation” is on their lips. I don’t want to go to those appointments because they remind me that we are still totally in this hard, undulating space, and yet I know I couldn’t not be in this grueling process with Ned. But, it would be nice if the appointment was in Italy, where white angels live and a few espresso-sipping oncologists do too.

This morning Wake grabbed my americano, and before he could get it down, I pressed his sweet, bitty hands in mine. “Oh no, baby.” Wake on caffeine, Lord help me. I walked into Verizon a few afternoons ago with Wake toddling along beside me with that gait that is so robust, hearty, and juicy. It makes my blood and body start swirling around him like I’m the Bermuda Triangle. He is mine. I almost want to cackle, I’m so delighted that his seventeen month frame is still so accessible to me. If you saw Wake, thick thighs and beautiful buns, I doubt you could resist reaching out and touching the glory. Some of you have no idea what I’m talking about. But, you must know what it is to want to sink your teeth into something. It’s the same feeling I had when I was 9, sitting around my grandma’s dining room table sucking the juices out of a porterhouse steak. Something primal sneaks up on me and then WHAM, I find myself on the ground in the middle of the Verizon store with my teeth bared and my baby’s thigh millimeters from my salivating mouth. His squeals of delight interrupt multiple conversations and I am glad. Stop talking about phones and look at this life! Look at the Chowbie Checker (as Pier and I like to call him)! Look at how he lights up without hesitation and what exuberance he has. Look at his little, illuminating soul that is not unlike our own. 

We glow like the stars. We glow like the moon. Let’s all drop everything and stand in awe of the light. It’s a light we recognize at our core. It’s easier to see in the sheer meatiness of Wake, but I see it in the man helping me. So, I found myself lying on the ground among very normal, respectable people. Dignified, really. I’ve traded my dignity in these days, and I don’t mind. I prefer it, actually. It reminds me that dignity is not nearly so good as swimming in life. It’s the same feeling I had when I was running around in my cute, nude colored sandals at the park chasing my kids like I was seventeen. I like the dirt, the ground, and the grass between my toes. It reminds me that I am from the earth. It reminds me that my bones will be ashes someday. And that is so, so good to know now and to embrace it with shaking outstretched hands.

I have plans to reinstate a mud pit in our yard. At our last home (we moved four months ago to Seattle), we had a mud pit. It was a place behind our shed where water collected and a constant state of glop hovered. Our kids would ask at some point, usually by 10 in the morning, “Can we go in the mud pit today?” Of course you can go in the mud pit, I would think. “Can we wear just our underwear?” was the inevitable question that followed. The whoops and hollers that were heard across Bothell when I said, “Yes!” lit up the town. The Abenroth kids are about to not only be allowed to play in their own yard without their mom outside, but they also being allowed to get cold and muddy from head to toe in only their underwear. 

Perhaps to others it seemed as though bedlum reigned on our property. On more than one occasion I heard a passerby ask, “Where is your mom and dad?” One time in particular I remember River responding, “I’m eight (he was 5 at the time) and my brother is 6 (Truss was 3). My mom and dad are at the store (we were inside, listening attentively), but we can handle ourselves.” So, after giving the all clear like I was an aircraft controller on the tarmac, my kids would turn on the hose, dam up the space with some extra dirt and mud, and the pig pen was on. After at least a couple hours of hearty play, I would call them to lunch. Time to hose down their splattered faces, mud ball hair, and glorious selves! What joy it was for them to frolic nude through the water. I kept them in the backyard when they stood in their full glory, but boy did they relish how good it felt to be free and alive and soak themselves in their entirety into the good earth. It was always an effort to get them to stand still enough for me to blast them with freezing cold water. I don’t blame them; I would rather be covered in mud than iced down with a fire hose. Their whoops and hollers resound in my mind. I wouldn’t trade those sweet, “I’m alive!” sounds for anything.

Since we have moved to Seattle, our TV sits unplugged in the basement, wedged between some mildewed chairs I plan on reupholstering someday and a kid’s pool table the old owners left. I am so happy about the deadness of the TV, I  want to spin under the stars until I bore a hole in the ground with my feet. Some of this happiness arises because I don’t want to and can’t listen to the horrors of the day and then be okay with letting my kids outside. I actually let my children play in our yard, in the front, with no fence. And, here’s something even more astonishing: instead of telling my children to not talk to strangers, I encourage them to yell “Hi!” to people walking their dogs on our street, to wave fearlessly at cars that stop and let us cross, and to ask anyone that comes within twenty feet of our driveway whether they’d like a homemade muffin. 

I’ve heard that some people don’t like four kids bounding toward them and yelling greetings. I haven’t met those people yet (and probably pretend they don’t exist so I can go right on waving my own arms), so we bake muffins on Saturday mornings to draw people in. We like people. I have taught my children about not getting into someone’s car when offered something tantalizing (like a new bike or ice cream or anything unbelievably good because really those people would hurt them very badly), just in case you feel like you need to instill some fear into my children. But, generally, people are good and my kids need to know that. Our neighbors emanate kindness. I can’t see why I should teach my children to shy away from people. I want to teach them to plunge into interacting and sorting out life fearlessly with others. And mostly, I think I’m giving them a much greater gift in handing them muffins and telling them to go break bread with a new friend that is now a part of our lives.

River spent the week before last in Walla Walla, running wildly and freely with his cousins. Gleefully he attended his first soccer camp and swam in the Walla Walla River at the “best swimming hole ever!”  And, I’ve heard that Auntie Mel’s broccoli was so good he had seconds. When River returned home, he began remembering: the presence of cancer is in our house. “I wish Daddy’s neck didn’t feel numb. I wish Daddy didn’t have that big scar on his neck. I wish those staples were gone. I wish Daddy wasn’t so tired in the morning.” I wish that, too, River. Ned has been experimenting with different drugs to ease the shooting pain he feels through is neck. He hasn’t felt like his normal self since the surgery, We’ve gone to a Naturopathic Doctor last week who specializes in treating cancer. He was informative and helpful, encouraging and engaging. Perhaps most excitingly, he gave us the name of a cancer navigator. We’d never heard of such a thing until we talked to Halmut for an hour. Halmut has a PhD, is a fabulously big brained man, and is for hire. He learns about a cancer patient’s case, orders a myriad of genetic tests and then searches the scientific evidence for certain treatments and how they best pertain to a certain client. He believes 200 melanoma trials are being run currently in the United States and Europe and when we hire him, he will find which trials have the most promise for Ned. Ned and I have thought about living in a different country with our family for awhile now, and I joked that maybe Ned will finally get that chance, should a foreign country offer a drug that is not FDA approved.

Ned and the older boys have been at Grandpa George’s 100th birthday celebration in Walla Walla for the past several days. I know being there was so rejuvenating for Ned. Walla Walla has always been so restful for my man, and he was able to connect with cousins and family at length: that has left him feeling more like himself. He even played volleyball at Pioneer Park under giant sycamore trees for upwards of four hours. All the while, I kept myself rooted in Greenwood, prepared to start graduate school at the end of next week and looked to create an inner calm to guide me gently into this new space in all of our lives. At least, that’s my prayer. I will continue pursing my Masters of Counseling degree, so if you need me to do a little practice on you, I’m sure we could diagnose each other as utterly human. But, that’s only where we’d start.

I walked around Greenlake with a friend the other day. She started talking about her life and then began retracting her thoughts, “You have so much going on. I feel badly talking about things in my life that seem minor.” In fact, they weren’t minor. I don’t find anything that someone shares as being trivial. It’s a gift to me. Ned having cancer doesn’t negate other pain, it perhaps bridges the divide, and lets others know that we know heartache. We all do. And perhaps, instead of closing up, instead of the cancer providing an opportunity for people to back away and hide, it could launch us into honesty with one another. I think Ned’s cancer has left some people not knowing what to say, and I imagine if it gets really bad and Ned dies, some people will move away from us because it will bring up enormous feelings of helplessness. But, I can tell you something: we are not uncomfortable. This is our new normal. This is our life and we love each other. Perhaps this is the gift we have been given: to know that pain is an overwhelming, beckoning doorway towards life. It requires so much. Too much, it feels, sometimes.

But, what I’m banking on is that it’ll be worth it. Wise people have spoken of pain before.   Ned isn’t the first young man to become ill, to fight cancer, and to have a modified radical neck dissection. Others have done this thing well, suffered well, become more open, more honest, and more in-touch individuals because of it. They have loved profoundly and their voices are our companions in knowing which way to go. Ned loves to feast on Rumi’s words and Mary Oliver’s poems have been my filet mignon lately. So I am stretching to stay open to what comes (mentally, emotionally, spiritually, and physically) and remembering that while I was in labor with River, the mantra that came from my mouth during the most consuming, fiercest part of labor, was “Open. Open. Open.” And then I relaxed into it, and let it come.  

All my love,

Jamie

An update from a very foggy mind...

First the good news…
Thankfully there is news.  My doctor thinks it is great news, and while I suppose he is right, great news in cancer is different than “great news.”  It is akin to discovering that you have a worm in your apple (as my kids love to joke)…it’s a great discovery because you could have discovered half a worm…  This is the category in which my “great” news fits…are you ready for it?  It appears that the surgery biopsy didn’t detect cancer in any new places!?!…anticlimactic I know, but my surgeon after previously asking me if I was sitting down and taking it easy now tells me that I should be jumping up and down.  (Make up your mind)  Multiple lymph nodes surrounding what turned out to be a 4 cm tumor were matted together and had grown into being a part of the tumor… but that was to be expected.  The rest of the 33 nodes and other tissue they took out and biopsied all came back negative, which is the great news part of the findings.  It means that I’m not on the verge of being stage IV, which is how I would have felt if a number of lymph nodes had been cancerous in addition to those already enveloped in the tumor. 

It also means that theoretically I might be cancer free and that I might stay that way…The possibility that I might live through this whole thing is almost harder to imagine at this point.

Of course news like this has a shelf life of about 6 hours before it seems old and less relevant.  I have a CT scan coming up (I’ve had several other types of scans but not a CT one yet) and now I’m already thinking more about what the results of that future scan will show vs. the results of a surgery that was done last week.  My next round of appointments are approaching and we’ll be deciding now how to treat me now that I’m stage IIIb and no longer IIb.  It sounds like radiation and immunotherapy will both be on the table as options…when I know more I’ll say more…

 

So how are you really doing?

It seems nary a day passes without me being asked to reflect on how I’m dealing with everything…  I’ve thought a lot about it and to be honest I don’t really fully know the answer.  But here are my convoluted thoughts.

When the river currents of life grab you and try to pull you under, you can thrash about in panic, try and stand straight up and find a foothold, hang on to the pathetic branch that you think will save you from the foaming water…the list goes on.  To the best of my ability, I’ve tried to simply let go of all anchor points, pick up my feet from the ground below, and allow the currents to carry me, to teach me, to humble me, to bless me.  Thrashing about and panicking never solved a damned thing, attempts to control the uncontrollable at best lead to temporary illusions of stability.  Sometimes I find myself shoved under and my lungs burst within my chest, but alternatively I often feel lifted up and carried not just by the angry waters but on the wings of a thousand prayers.

Where I find strength, I know it isn’t my own.  When I find pain and suffering I try and welcome it as an honored guest, as it is only by diving into the darkest parts that we ever find healing.  Fear hasn’t been present, the need for control is (daily) given over, pessimism, optimism, certainty, and the future are all banished concepts… and all that jazz…somehow the whole thing seems easier than I would have imagined.  Certainly the circumstances are overwhelming…but sometimes you’re so far in over your head that you have to simply let things figure themselves out. 

And on the other hand, I know that there are no shortcuts in life.  We don’t get to jump to “acceptance” without first experiencing anger, denial, bargaining, etc.  Resurrection by definition is preceded by death, and not just the idea of death but the experience of death.  Peace is preceded by deeply mourning and experiencing grief.  All of which makes me wonder about my reactions thus far. 

One of my friends and I were talking the other day and he warned me of two pitfalls towards which my super-ego would be steering me.  First the super-ego will try to make meaning of the mess, to take something that might be meaningless and to give it significance.  Secondly my super-ego will use my past journeys to color how I react to today’s experience.

Pitfall #1:  Some say, “Everything happens for a reason.”  This religious idol lifted up in some factions of every major religion is the epitome of pitfall number one.  What the saying suggests to me is that a (loving) God somehow thought that XYZ, which is painful and unjust, should occur and thus orchestrated it for God’s mysterious purposes which we are not free to question.  Bullshit.  Try telling that to a victim of abuse (actually please don’t), it’s laughable and offensive.  My cancer might be a specific/direct gift from God but it is more likely to be a gift from my gene pool… 

While I could never say that “Everything happens for a reason.”  I do think that everything is used.  As we look back on our stories and see themes and rhythms and rhymes appear with regularity, we can see how all of it is used by God for our highest good and the highest good of the world.  Especially the suffering, the bad choices, the pain…the parts of our story we wish we could forget seem to play starring roles in stories of love, redemption, transformation, resurrection, etc.

I don’t think I’m ascribing meaning or significance to a meaningless/random event…significance seems to have been birthed on its own.  The event of cancer on my community has been largely positive and deeply meaningful.  Because of a little mass of cells growing awry, we have all shined, love has been a verb not a sentiment, earnest, authentic conversations have occurred that never would have otherwise, new relationships have been kindled, we’ve each been invited to gaze and meditate on our own mortality, and souls have reached up to God, while holding hope, tasting grief, bringing doubt, and asking for belief… All of this is wonderful and there is much more beyond it…and none of it would have happened if I didn’t have cancer.  It is strange to be thankful for your cancer, but I know that Jamie and I are both grateful for how it has resulted in so many blessings.

Perhaps it isn’t that we are looking around and ascribing significance to meaningless events…it is that we are blind to the Presence of Significance that bathes all of life, all the time, even if God isn’t going around causing cancer, God is present in those stories, identifying with our suffering…and using it for Love.

Pitfall #2  I can’t help it.  None of us can.  We all will have our past experience and our current beliefs influence how we absorb each day…Even if we wanted to, we couldn’t stop it.  But in regards to how I’m dealing with cancer…it is a great question.  I’m sure that my past in dealing with this stuff must be helpful but I wonder at how it hinders me from experiencing my own experience. 

With Mom having died of melanoma at age 51, this whole process has seemed eerily familiar.  I remember going many of the classic stages/emotions around her death including anger, desperation, deep grief, and eventually I came to a place of peace and grace.  The feelings that I have right now are more along the lines of acceptance, peace and grace than anger…maybe not acceptance of dying, but acceptance of my current stage.  There have been tears, there has been grief, but these have been relatively few…mostly through this whole thing I’ve felt acceptance.

A little over a year ago I went on my vision quest/rites of passage trip down to the deserts of Arizona.  Part of the work surrounding that trip was to live life with open hands and an open heart, not holding on too tightly to anything here on this earth.  There is no doubt that my experience with deep grief and the spiritual work I’ve been doing in the last couple of years have helped prepared me for this…but perhaps in understanding what the final destination looks like (peace/acceptance) I’m somehow not experiencing other parts  (anger/sadness/bargaining) of the journey as much as I should.

Rather than shortcutting any process of suffering and putting on a forced picture of serenity in the midst of struggle, I would much rather let everything hit the fan, and be ok with the slow work of dealing with the carnage.

So I guess while I do feel relatively at peace right now, I don’t entirely trust my own feelings…part of me feels like there must be a well of other emotions that I’ll also have to experience as this process goes along—life it seems is always three steps forward, two steps back.  I’m trying my best to welcome and be present to what is, without forcing some neat linear process nor some premature conclusion or posture on to it.  If things fall apart and I’m a panicking, kicking and screaming mess for awhile, then so be it…

Neighborhood Garden!

One of my goals was to get planter boxes built for a pea patch on our block.  The idea was people on the block could grow veggies for themselves and with space leftover we could grow veggies for a local food bank.  After communicating this dream in a letter last week, we have some neighbors rallying around the idea and this Saturday morning, they’ll be filling and planting seven boxes on our front parking strip!  If anyone wants to come and help, let us know.  We’ll be serving muffins and lunch to our helpers! 

Truss has continued to improve, but he has a ways to go to get back to his previous weight/stamina/strength/etc.  River on all accounts is loving being in Walla Walla with his cousins, aunt and uncle, and grandparents.  Wake and Pier are both shining and having awesome summers.  And Jamie…my love, my best friend, my rock…she is doing miracles over here keeping everything humming and doling out lots of love to all who she touches.  Thanks to all of you again for your food, your prayers, your calls, your drop-ins (the drop-in is alive and well in Greenwood!), it has all been wonderful…

Cheers

 

Ned 

 

An update from Jamie

I’m Jamie Abenroth, related to Ned through the wedding ring his slipped off his necklace and on to my finger nearly 11 years ago. Tonight I want to give you an update about how life has been like these past few days. Thank you for being here.

Xoxo

Jamie

We are sitting at home today. Almost twenty Chinese lanterns are hung on fishing line across the expanse of our yard. One line is draped across our huge poplar tree, the maple tree whose leaves cover the whack job it once got is another anchor point, and then a few extra lines soar up to Truss’s (our five and half year old son’s) bedroom. Ned is so like his dad, Paul. They know how to rig things.

Ned is sleeping now in the free blue lazy boy we got from Craigslist. He loves that chair. When we were moving, I offered to sell it to someone for $25, but then went back and said I couldn’t. Ned is like that chair. Unpretentious, comfortable, worn because of all the love and people it’s known; all the bodies to which he’s given rest.  

Ned’s feeling a little over drugged on oxycodone, so we’re going to cut it in half. My best friend, Becky, and I are watching his chest rise, watching the space between breaths, and making sure his breaths are coming like waves – rhythmic, soothing, and just strong enough to carry his body to the next one. It’s unusual to watch another person like this, to be so close and present to only this moment. The stillness is nice. The nothing-but-this is centering and quiet. I’ve wanted less for a long time and wanted more of Ned’s presence for even longer. He opens his eyes, “You’re concerned.” No, I’m not concerned if you’re not concerned, babe. Plus, if you’re talking to me, I know you’re getting enough oxygen.

The past couple of days have been exhausting – heart, mind and soul. Truss stayed at Children’s Hospital with my mom for three days and two nights. He has a bacterial infection that most commonly comes from undercooked pork, spoiling tofu, or animal feces. We’re guessing the culprit was our bunny, Timothy Thomas, but will never really know for sure. Truss dropped 6 pounds on his once 43 pound frame through vomiting and diarrhea. He also had an unusual body rash and a 103 fever for 9 days, which perplexed doctors. One of the docs told me that these types of infections often lead to death from dehydration for those that don’t have access to clean water. I can’t imagine what it would be like to be a mother who had no place to turn but her arms.

Yesterday, Truss came home feverless (YES!) and with some chutzpah. I guess that’s what happens when you’re five, watch cartoons for three days straight, and are confined to a bed or toilet. It’s time get out, and shake your mind and body from the trance which they were in. Truss was agitated this morning and scowling at me. Pancakes weren’t right. The Gatorade was too cold. The remote control car is not charged. Daddy is still sleeping in his blue chair. Mommy is monitoring medications and looking into her doula’s eyes to stay grounded herself. Nothing is right in his world. I sat with him at the breakfast table and said I was sorry that I couldn’t be with him at the hospital. I asked him if he knew why Mommy and Daddy couldn’t be there. “Yes,” he said, “you were too busy.” And then I said, “Daddy really needed me Truss. I had to be Daddy’s doula when the doctor cut out Daddy’s cancer.”

 My mom stayed with Truss and gave me the freedom to be totally with Ned. I do feel sorrow about not being there at Children’s, but I don’t feel guilt. I didn’t have the capacity to hold both of my guys being very sick. The thought of Truss continuing to decline brought me to the edge of my being. So, I called a friend. After listening to my wavering voice, she asked me what I was afraid of. “I’m afraid he’ll die. I’m afraid that Truss will die and I don’t think I can go in and face that.” After saying it out loud, I came back into myself. Bacterial infections are frightening, and I could see myself trying to avoid the internal storm of witnessing what was happening to Truss’s body. When I spoke my fears to my dear, available friend, I saw that it was quiet in the eye of the storm. I wasn’t running away from my anxiety, I went right into it and spoke my worst nightmare aloud. I was then able to walk inside and be with my son.

My soul is finding rest in the warmth of women who know how to hold what is and be present to me. I told my doula, Amity, this morning that I love women. She gets it. “Every woman needs a wife,” she tells me.” “I think we each need two,” I say. I need these deeply rooted women around me; Women who get me and get that I may need to borrow their roots for awhile.

Ned invites people into his life, his space, and his moments. The AbenBraaten Family Reunion this year started at our house before Ned and I were released from the hospital last night. Ned, on narcotics, sporting a drain and bulb inserted into his neck, and being less than 24 hours out from having a modified radical neck dissection….yes, that Ned was loving it. He loves the life he feels around these people gathering together and he wants to be a part of it, no matter what.

Ned wants people who want to be close, to be close. Sometimes it’s for him, and sometimes it’s for them. It doesn’t matter to Ned. He just says, “If they want to come, let them come.”  I want to be like that. I’m stretching to be like that. Often times I want Ned all to myself. I want to lay my head on his chest, look into his eyes and protect the space I long to just be ours. I know there is goodness in that. But, I don’t want to hold on to Ned too tightly. I want to welcome others, too; welcome them into my life, like Ned welcomes them into his. So when two family members and a friend showed up in the moments before Ned’s surgery, I wondered how I’d feel. It was a shared moment. We were all witnesses to the protruding lump on Ned’s neck and knew that it would be gone in a few hours. They all showed up and I felt relieved by their presence. I think some of them needed to be there, and it turns out, I needed them, too.

Prior to surgery, we asked Dr. Byrd, the chief resident Nicole, Nathan the resident, Kelly the ER nurse and anyone else who walk in the room: “We want pictures of the operation, lots and lots of pictures. Can you make that happen?” I wanted to see the tumor and told Dr. Byrd so. What color was the cancer in my husband’s neck? He thought it would be black or perhaps white. I asked if I could take Ned’s tumor home. And although the melanoma had to be taken to pathology and I couldn’t, I’m glad I asked. It’s part of my husband’s body. It’s causing us to move fiercely into the moment and splaying our hearts open, which is not such a bad thing. It feels painful, achy, and heavy. But, the way we gazed at each other while Ned was on the stretcher, my head on his shoulder, felt intimate and alive. “Four children and you still love each other like that!” exclaimed our nurse. That makes me feel proud. That makes me feel lucky. That makes me feel whole. And that makes me feel like we’re on to something.

Ned’s surgery went according to plan. There were no surprises. Dr. Byrd met with me while Ned was in the recovery room. It turns out the fluid-filled lump on Ned’s neck was never a benign, fluid-filled seroma. It was always a cancerous tumor. Since Ned’s first surgery three months ago, the tumor grew from nothing to at least 3.5 x 2 cm. It grew rapidly. It’s aggressive. It’s atypical. And, it’s gone. Dr. Byrd removed part of Ned’s Parata gland, around 30 lymph nodes from the right side of his neck, the tumor and a section of skin surrounding it. He wasn’t sure if the facial nerve which holds up the corner of his mouth when he smiles was severed. He also wasn’t sure if his shoulder muscle would be dropped permanently. But, neither of those happened.

So, now we wait. We’ll hear the results of lab testing in one week. Dr. Byrd believes the melanoma actually is in the lymph nodes, despite an earlier “all clear” result. Tonight Ned is resting in his blue chair with a blanket I’ve had since childhood. It feels comforting to me to see him wrapped in it, like my arms are around him even though I’m sitting across the room. He is doing remarkably well. He’s talking about Macklemore and listening to the M’s game. He’s smiling, with his ice pack acting as a pillow. He says he never wants to do this again. It’s a lot to ask of a person, taxing on body, mind and soul. The staples extending up behind his ear and trailing down part of his neck are intense for me to look at. I don’t want my husband to be cut into. I don’t want him to have these wounds. But, the tumor is out. And when I get the pictures, I want to know if this thing that has caused so much upheaval in so many lives, is black or white.

We have no plans but to sit and rest and recover. Our home has an open door, and you are a part of our family reunion. There is no encroaching here, only welcoming. So, if you should like to see Ned or drop by Greenwood, we give you the green light in our lives. I know that the weight of all that is going on would be unbearable for us to hold alone. It’s your love – in whatever way that has been expressed, that is giving us the ability to be doing so well. I have no doubt that the prayers and energy you are sending out are being felt by us and your cards filled with warm words are like warm buttered bread with honey, nourishing us from the inside. I can’t say how honored I am that you are even reading my words. You are getting us through. And tonight I am so thankful that the surgery is over and the tumor is out. But, you need to know that I am (and I know Ned is, too) even more thankful that you are in our lives.

We love you,

Jamie

I consider myself the luckiest man on the face of the earth...

Well Truss spent last night at Children's and for now they aren't going to let him out until they know what he has...He still has a 102 degree fever, but he is at least now on an IV and won't be getting dehydrated. I wish Children's and UW were the same place so we could be under the same roof tonight!

____

This email below goes back a week or so right after I heard that my PT scan wasn't showing cancer anywhere other than my neck. It is from my dear sister Britt. I have recieved so many phone calls, emails, texts, cards, FB messages, and they all mean something to me. The look of desire in our eyes as we reach out to God is God. The passion, love, desperation, empathy, and other emotions we have for God to intervene is God showing up and being present. The request is itself an answer...God is present in our looking for Her--which is all God promises. Getting emails like this almost make having cancer worth it...seriously.

There are so many messages I've gotten that I wish I could pass on, from the short and pithy, to the hilarious, to great uses of profanity. From so many I'm recieving energy, prayers, positive thoughts, good vibes, sacred tears, according to the traditions of each. One college buddy told me he generally is skeptical and doesn't pray but he is willing to make an exception for me. Love it. Totally made me laugh. That makes it worth it a bit as well.

Our lives are richer when shared. Joy multiplies, greifs are healed, wounds are held, laughter is deeper... that's why I asked Britt if I could forward this one to all of you...

Hi Ned,

You have always amazed me by your ability to be completely present in any situation. Kids may be running around screaming, several conversations are carrying on, but you stay solidly in the moment you are in and it has always inspired me. I want to tell you a bit about some of the moments of the week here in our household.

I think I told you that family is in town. My mother-in-law, Micaela (for whom Mica was named) is here, as well as two sisters-in law, and a niece. Max and Lita, recently married and pregnant are here everyday to visit and continue our adventures. You know me well enough by now to know that I am unable to hold anything in. There are no secrets, it is all written all over me and I am happy to share anything I am experiencing with anyone who wants to know. So...the other night after a bit of a meltdown I let everyone know what is happening right now. My brother has cancer and I am hurting. We are all hurting.

The Urquizas, as you can imagine, are doers. Within five minutes my mother-in-law was on the phone, and she didn't just call her sisters. She called her neighbors, her landlord, her children (all of them) and anyone else that came to mind. In the last couple of days there have been skype prayer circles, congregations between here, El Paso, Texas, Paso Robles, California, and Chihuahua, Mexico have been reached and are holding you and your family in their hearts and prayers. The name Ned Abenroth, as well as all of your immediate family, has moved across telephone wires and cell towers for hundreds of miles. My sister-in-law, Lorena, who I have never met, called to let me know that her church was going to be praying for you.

This afternoon, after hearing the results of your scan, a mighty cheer arose in the house. Prayers continued, thanks was given, wine was opened. There is still a huge battle ahead, but boy am I thrilled to be surrounded by a team who can cheer and give thanks for the victories along the way.

I have to admit, in other times, this kind of prayer has baffled me. I have appreciated it and felt heartened by people's faith, but I have still felt reserve. That is forever gone after this amazing experience. Praise God, Love Ned, spread his name and story!

I am so proud to know you and to love you! You are a huge part of how I identify myself and my incredible family.

I love you (and secretly want to swim with sharks with you),

Your forever sister,

Britt

I love you too Britt. Thanks again for your support and the support of your family's family's families. And thanks to all you and to God for being able to experience such an outpouring of Grace...It exceeds the pains a hundredfold.

Go Hawks!

It's raining it's pouring...

Surgery and Camping

So tomorrow is my next surgery (check-in at 12:45 with surgery to follow probably around 1:30 or 2PM).  It is a good thing… surgery that is… in fact it is amazing.  I welcome it; I wish it were today.  And yet, this particular one has more than its share of potential complications.  In a world where we can see the procedure on youtube before we actually have it, and where we can read the “reviews” of other people who have undergone it, we have a different type of knowledge about these things than patients did 10-20 years ago.

This surgery will leave parts of my scalp, neck, shoulder, and face with numb skin (permanently).  Apparently I’ll have to use an electric razor now because I won’t feel a normal one and would easily cut myself.  I won’t be able to turn my neck without physical therapy, and I guess the pain will be much worse than my previous surgery.  One of my buddies who is a surgeon affectionately called this procedure “the big whack”.  J  Thanks for that.  J  Actually, it didn’t bother me, just made me laugh.  I’ve told the kids that they’ll cut my neck off and sew my head back on to my shoulders…they still laugh when I scrunch up my shoulders and try and show them what I’ll look like.  Other possible problems include an inability to lift my shoulder, problems smiling, and even partial paralysis of the tongue.  Which of these end up happening, we shall see but I can live with any of them…(easy to say now)

Realizing that my summer plans of golf, backpacking, and house projects might be changed to lounging in lawn chairs and getting worked over by a physical therapist, I fast forwarded some plans and spontaneously went backpacking to the Olympics.  After two days and two nights of solitude at 6300 feet, I was joined by River for two more nights.  River was amazing.  He had to walk in (with Jamie) for almost 6 miles, climbing 3800 feet while carrying a 17 pound pack.  Together we summated Mount Buckhorn on a day hike climbing up to 7000 feet (Mount Olympus is 8000) and several times walked 40 minutes each way to replenish water from Camp Mystery below Marmot pass.

We camped in a meadow 300 feet up a ridge from the summit of Marmot pass, enjoying 360 degree views of mountains, Puget Sound, Hood Canal, Whidbey Island, Mount Baker and the Cascades.  At one point River hiked for about 45 minutes on his own from a lower meadow up to our camp and back, traversing a steep ridge that looked on one side down into the Dungeness River Valley and on the other side toward the Sound…it wasn’t a big deal to him, but for me it was quite a moment.  I was able to see him most of the time, and we could whistle and wave, but there was a short period where he was on his own.  Ah the process of letting go and watching a boy mature in front of your eyes…

More Drama

Today we went to Children’s hospital.  Truss has had a fever for 6 days in a row now, and it is time to start looking at things like E coli or something else very similar.  He’s lost 10% of his body weight in 6 days, and Lord knows he didn’t have any extra flesh to lose to begin with.  I hope that Truss and I aren’t spending nights in different hospitals at the same time, for now he is on the couch after having had a large dose of antibiotics…Jamie is dealing with everything with her normal grace and poise, but I think we’ve had enough stuff right now to last us for a decade…when it rains it pours…or as Lenin said (and what blog is complete without a quote from Vladimir) “There are decades when nothing happens and there are weeks when decades happen.”

There is much more I want to write...but I want to get this post out and it appears that right now I have to take Truss back into Children's to get an IV in him...  Cheers all.