Dancing with Grief

Well it has been a long time since my last post, and while there are some practical reasons for the delay—namely that I’ve been waiting for any real medical news to come—there have been deeper reasons as well, specifically that what has been happening in my life has felt frankly embarrassing and difficult to say in this forum…but we’ll get into that in good time.

On the medical front, since my last blog post most of the time was spent waiting for a genetic test to come back on my tumor.  I’ve had CT scans in the last couple of weeks that came back clean (thank God), some more spots taken off my back that are way too close to being additional cancer sites and need even more flesh extraction (I thought the docs had taken their pound already), and went to Philly in search of cheese steaks, drugs, and Rocky.

BTW, why does Philly has an extra “L” when it is abbreviated?  Shouldn’t it be “Phily?”  The natives I asked didn’t know.  I did find success in the cheese steaks and the Rocky department, but struck out when it came to drugs.

The trip was to see if there were some clinical trials I could get into, and the short answer was “No”.  However, I did learn a few things, namely that should my cancer come back, the historical survival odds of people with stage IV melanoma are, well, history.  The advances made in the last twelve months render old statistics irrelevant, and who knows perhaps they will really cure this thing in the future…for now people who are stage IV still have significant odds to overcome, but it isn’t as bleak as it once was.

For some reason those words don’t give me the release I crave, but I’m still glad that they are true.  When I tell friends I can see in the faces the significance of the news, even if I can’t know it in the way they can.

So for now, medically, I’m NED (No Evidence of Disease) and even if my next scans in 2014 show the melanoma is back, I have plenty of reason to hope…even if I can’t totally embody hope right now.

If I think back to this summer it seems that my mortality was with me in a very real and present way.  Some would have said that my blog posts were dark, okay fine, but to me they seemed full of light as well.  Life was bursting with color, love was passionate, food tasted novel and layered, the mountains were positively glowing, (and no this wasn’t just the pain meds.)  The Logos was pulsing, each strand of divine DNA connecting all things was luminous.  My summer was much like the title of a book I’m reading by poet and fellow cancer-survivor Christian Wiman: My Bright Abyss.

There are lives that experience seems to stream clearly through, rather than getting slowed and clogged up in the drift waste of ego or stagnating in little inlets of despair, envy, rage.  It has to do with seizing and releasing as a single gesture.  It has to do with standing in relation to life and death…owning an emptiness that, because you have claimed it, has become a source of light, wearing your wound that, like a ramshackle house on some high, exposed hill, sings with the hard wind that is steadily destroying it. –Christian Wiman

Attempting to be one of these people who “seize and release” simultaneously, who fight for life and let go of needing to be alive at the same time…this has been my quest…

This summer the presence of my frailty, my limitedness, was ever present with me, and while it seemed to brush up, to awaken, to abide with me, to drive me, it seemed all a bit dreamlike as the emotive movements seem to float on the surface, never penetrating, shaking my head, blowing my mind, but never landing in my chest, never sinking into the gut.  The external weight was there and was palpable, but the internal response was numbed, it never seemed to touch me deeply in a way I could respond emotively.  There was physical pain, there was a real mind job, but it all stayed up top.  Tears were absent, sadness seemed dimmed, expressing grief was still a ways off.  I remember rambling off the statistics about people in my situation as if they were another trivial anecdote to be a part of the water cooler banter. 

That the weight of the situation wasn’t eliciting an equally strong reaction from within was not lost on me, and Lord knows I wanted to feel, to be present as fully as possible to my own dilemma, but something inside me was protecting me from feeling it all at once.  I wanted to feel it all, but had no desire to prematurely create some experience artificially.

They say Time heals all wounds: so obviously not true I wonder why we even say it.  Time is essential, it is true, and Time can bury wounds if we ignore them long enough, a cheap imitation of healing.  But for actual healing, we have to enter the wound, and the deeper the wounds the more time is needed to feel the fullness of the wound, which is an initial step towards healing.

Sometime this fall, the stuff that was deep inside started to bubble up. 

This summer I didn’t feel overly self conscious about sharing about my battle with cancer, probably because facing it seems noble, brave, courageous, and there is some part of me that likes the image of me staring down death, …but strangely when it comes to sharing about the aftermath of the stare-down it is more difficult to write.  I’m aware of a strange sense of judgment from our culture about what this process is supposed to look like.  As a man I’m to be the master of my domain, taking things in stride, keeping a positive outlook, exhibiting strength in the face of adversity, the whole John Wayne myth is strong even in my generation.

But what I was feeling was at odds with this.  Seemingly simple interactions with the kids would overwhelm me, my heart would start pounding, anxiety would rise, and the need to escape would escalate.  Tears would only come rarely, but they felt close much of the time.  My passion for my work was strangely absent, and for the first time it felt like work, that is drudgery and difficult.  Not all aspects of work were tough—I still enjoyed meeting my amazing clients, but I found a lack of interest in keeping up with my weekly reading and research…it all seemed so pointless…ashes.

The timeline of life events and our emotional response to them don’t match up perfectly.  In a move for self-preservation, something deep inside of me, knowing that only so much pain and grief can be metabolized at a time, created a separation of time between the events and the response.  While in the last few months there has been little new in the medical front, something inside of me was finally ready to feel the events of the summers, and this experience has frankly been almost just as disruptive as the physical events of the summer were. 

I don’t really believe that I have anything to feel ashamed about, that any of this experience somehow calls my manhood into question.  If anything I believe that being undone by cancer is healthy, normal, and more courageous than keeping it together, that falling apart is actually a move to being whole.  But I’m aware of the broader culture in which I live that teaches that these experiences are to be kept quiet, that there is a sense of shame, no matter how illogical, for men when they aren’t calm, cool, and collected at all times.

Our culture still views victory as victory and defeat as defeat.  It preaches that men who are struggling are somehow less than men who project a false sense of conquering by refusing to struggle.  But my Teacher taught that to go up, you must go down, to truly live you must first die, that society’s “winners” were usually the losers, and the losers would win, that the rich were impoverished, that the poor in spirit had easier access to wealth no one else could see or appreciate.

This divide between how culture thinks I should approach it and the way of Jesus is so wide that it can’t be bridged.  So while I’ve felt comfortable facing this more emotional time in my own way and have been totally open about it with friends and family, I’ve been reticent to shout it out from the hilltops in a forum like this.  Strangely enough I’ve been able to feel the shame of the culture even when I think the whole basis for the shame is ridiculous and a sign of brokenness.  (In fact this blog was written in mid-November and it has taken me this long to actually finish it and publish it…yet another sign of me dragging my feet.)

Inside I made some decisions:

I will not rob myself of experiencing my own life by conjuring up positive emotions I do not have.  I will not force a premature outcome, but trust the process.  I choose to trust that the flow of the current which has been sucking me under, will eventually pop me up downstream, leaving me worked over but somehow stronger for it.

At first I wasn’t sure if I could trust the process. I was haunted by the fear that perhaps I was entering a season of depression, and not having experienced depression before it worried me.  Depression to me, is something you must fight against.  If you give yourself over to depression you may get lost…for a long time.  It seems to me that depression can spiral down in a self-feeding chain reaction…and I wanted no part of that. 

Even dwelling in a wound too long can become a problem as your identity starts to BE the wound.  Especially if we don’t have desire for health and wholeness, we will seep in the bitterness that can come from a wound and the wound becomes the story, instead of a teacher, a gift, a sacred window into a deeper way of life.

But it seems that what I’ve been going through is a process of grief, and we have nothing to fear from Grief.  I know Grief, we met back when my mom was dying from melanoma, and I discovered then that if you are willing dance with her, Grief can be trusted.  The Teacher said that “Blessed are those who mourn, for they will be comforted.”  Time doesn’t heal wounds, but that sacred rite of mourning, the strange choreography of embracing Greif, of tending to our suffering, of letting go of the object which She is taking away even while we maintain our desire for it…this dance works miracles.

Our culture knows nothing about mourning.  We want one hour funerals followed by a potluck where we can go back to talking Seahawks over the cheese tray.  Instead of funerals we want “life celebrations” full of touching stories and fond memories, but hopefully without having to feel the pain of loss.  These expressions aren’t bad, but they won’t heal nor provide much in the way of comfort.  Unexpressed grief is a corrosive cancer that stifles your ability to experience deep joy, love, hope, and everything else as well.  Grief that has been entertained, courted, expressed, known, explored, will eventually leave you as a blessed person, whole, alive and full. 

I don’t know where I’m at in this process, at times I feel healed and at others, the rawness of it all seems very near.  (Now a month after these words were written, I thankfully feel like I’m mostly out of this process.)

I’m also aware of how other’s reactions impact me.  Again, a quote from Wiman:

Whenever I find myself answering someone’s questions about my illness, explaining what is going on in my body or the bizarre treatments I am about to undergo, it is as if I am wholly detached from what I am describing, as if my body were some third thing to which both of us were impassively directing our attention.  This is one reason why any expression of pity can be so jarring and unwelcome.  The sick person becomes very adept at distinguishing between compassion and pity.  Compassion is someone else’s suffering flaring in your own nerves.  Pity is a projection of, a lament for, the self.  All those people weeping in the mirror of your misery? Their tears are real, but they are not for you.

It is as if there is only so much of each kind of emotion (optimism, pessimism, sadness, anger, laughter) that can be felt in a given interaction.  Right now I have around a 75% chance that the cancer will be back, but where over 90% of stage IV people used to die, now maybe only 40-60% of them are dying—a huge improvement (and these numbers keep changing.)  So how do I react to this?  Is the glass half-full or half-empty?  For me the answer to this question is “Yes.”  There are both reasons to be optimistic and reasons for concern. 

Most days, when on my own, I’m living into the optimistic side of the coin, but I’m impacted by those I’m with.  When I feel met by someone, when empathy is present, I feel free to experience my own experience, to simply be in the moment, and who I am or perhaps where I am is accepted and held.  Thankfully, this describes the vast majority of people in my life.

But there are some who aren’t able to meet me, they are too much lost within themselves, they literally can’t be in relationship with me.  As Wiman said, for these people I am a mirror, and they see only a projection, a mirage, a reflection…and strangely enough I am aware of a certain urge to counteract whatever it is they’re projecting in an effort to shatter their mirror…I suppose it is an unconscious effort to be seen, instead of being used, of being reduced to a caricature that fits their preconceived notions of life.

It almost doesn’t matter what the person is looking for (and falsely finding) in my situation, this dynamic happens.  If I’m with Polyannas who refuse to consider the negative possibilities and imagine that “it will all be OK, ”I will quote the statistics that show that most likely I’m going to die.  If I’m with an Eeyore who already has me in the grave, I want to shout “Hey brighten up, I’m not dead yet!  There is much to be hopeful about.”  With people who overly cheerful, I feel morose and unseen, with those who are overly concerned, I put on a care-free air.  With people who are relieved that the recent news is good, I urge caution.  With people who urge me to “have faith” because “Everything happens for a reason,” I want to destroy this straw god that is protecting them from reality.  With people who are coldly scientific I want them to see that God is clearly present in the midst of this whole ordeal…and the list goes on…

This dynamic is going on every day for all of us, but there is something about a strong catalyst like cancer that makes it more apparent.  And perhaps in a culture where there is so much suffering that has been suppressed and not processed, those who are in the midst of it become walking icons, where for some only the image is visible but for others that which resides beyond the picture can be glimpsed.  Morals to the story?  Look deeper, set aside assumptions, be curious, let the other be free…for this is essential if empathy is to make an appearance.

I realize that I say all of this as one who has been an object for some, and not a subject.  And perhaps in talking about it, I’ve done the very thing I’m warning against—that is, putting others in boxes.  I’ve most certainly been the perpetrator of this before and sadly, will likely do so again, so in this I guess I preach all of the above to myself as much as anyone.

So where to from here?

I originally was planning to write a note at the end of this post wishing everyone a happy thanksgiving with perhaps some ironically trite thought on those things for which I’m grateful, and while gratitude is present and would be on layer of my experience this year, I have a sense of disgust right now in thinking ending with a sweet verse.  Clichés make me puke, and it is mid-December anyway—turkey and dressing are so last-month.  As I look back at this year, a much more honest expression would be something along the lines of good riddance 2013.  I can’t wait to get this fucking year behind me, in the books, and move on! 

 

And yet...

…thanks and props to you Creator, my Great Physician, you get me in all moments of all my stories…I feel you God…and live or die, this fucking cancer will never have the last word.

Holding the heart of darkness

I'll never forget the moment in late July that I found out my melanoma was back.  It seems like a lifetime ago, and yet it was only a month and half according to my calendar. On that day, I was on the second annual Father-Son Extravaganza, up in the mountains outside of Leavenworth. On this trip, we do a combination of manly activities (axe-throwing, BB-gun shooting, sling-shots slinging, river rafting, and similar activities) that would interest boys ages 3-11. We camp in a meadow on 50 acres of private property, align our tents in a circle around the fire ring, tell stories, share jokes, and howl at the moon…no really, this year we actually did howl…(you probably had to be there.)

It was here, surrounded by some of the most important men in my life and my two oldest boys that my surgeon delivered the news about the cancer.

Earlier that day I had received a phone message from my surgeon’s nurse saying that he wanted to talk to me…badly…When a surgeon gives out his pager number to a client, it is never a good sign.  A page was sent pronto, but nothing was heard back before a group of us started to float down the river on tubes.  I did my best to enjoy the waters, knowing instinctively that bad news about the growing bump on my neck was pending…and in this the beauty of the river, the heat of the day, and the sheer joy of my sons and nephews reveling in the ice cold water worked wonders on my soul.

When we got back to camp, one of my buddies Scott, who works at UW in the surgery center urged me to page Dr. Byrd again, and this time Dr. Byrd responded quickly.  Sitting around the camp fire, my brother Dewight and I listened on speakerphone as Byrd laid out the news.  I don’t remember much about the conversation, except Dr Byrd saying that his jaw dropped and hit the floor when he saw the report, so unexpected was it to him.  As the sunlight was slowly moving from the harshness of a triple digit afternoon to the comfortable warmth of a gentle evening, I went around to my friends and dropped the news.

On this trip, we take time out each morning and night to tell stories around the fire.  This year is the second year that one of my best friends Paul agreed to be the official storyteller for the event, and in this role he did not disappoint.  Friday night and Saturday morning he wove tales of adventure, courage, perseverance, and becoming a man, inspiring not only our sons, but equally the cigar puffing men who held the sacred space for the young ones.  Saturday afternoon, when the heat of the day prescribed a departure from axes, carving, slingshots, and the like, we all headed for the river.  While the older boys braved the rapids, the younger ones enjoyed slightly calmer waters, trying to catch small fish, digging in the mud, and at one point crossing the river with the help of the dads.

Much of that afternoon I was able to stand alone, out in the middle of the river, still paying attention to my boys near the shore, but at a distance.  A shallow spot offered itself to me, where the water only came up to my thigh and I could hold my ground against the current.  Under a fiery globe that threatened to set my hat on fire, I kept my feet, cooled by the liquid snow, and calmed by ever-moving waters.  I have little remembrance as to what I contemplated or felt that afternoon, but only that the river was up to task of meeting it all and gracefully carrying it downstream.  Later, my brother Dewight would comment on both listening in to the phone call and watching me be surrounded by the river.  I think he would have better words to describe that afternoon…but then, even the best words are impossibly blunt, crude, and inept.

It so happened that the waters were calling Paul away from our camp a bit earlier than normal, as he had to return to Seattle early Sunday morning for his grandson’s baptism.  Knowing this, I had prepared in advance a story to share to close out the trip around the final campfire of Sunday morning. 

No doubt it meant more to me than anyone else, likely a great deal more.  But that mattered little to me, for even as I was sure that the words only washed over the boys, leaving not much more than a subconscious imprint, they seemed then even as they do now, to be words ordained by the Word, and destined for that very moment.  For as the opening lines of the story poured out, I looked around the circle and saw uncles, godfathers, and mentors of my own boys.  A community of men looked back at me; men who I was lucky to consider friends and even luckier to have as elders to my boys.  And I saw my own boys in this story, whose combined personalities mirror much of the young boy’s in the story.

While I believe I’ll beat my cancer now, at that moment I wasn’t so sure, and knowing that there would be good men both present and back in Seattle to help my own boys, meant the world to me …and the images of my own boys, somehow embodying the role of the young Israel...let’s just say that there was plenty of transference and projection going on that morning…and yet… perhaps it was the rhythms of God resonating between a campfire story I had chosen, and the life I was living.

Here is the story, put to paper by Gerald Fierst, and with only a few slight modifications I inserted for my own purposes.  For those who don’t know, the Baal Shem Tov was a historical Jewish mystic (1698- 1760) who is considered to be the founder of Hasidic Judaism.  Where the legends of him end and the actual historical record begins, or where they intermix or separate, is unknown and trying to bifurcate fact from legend is missing the point in my mind.  As far as I’m concerned, the story below is true, regardless of whether it actually happened.  See for yourself:

When Eleazer lay dying, he called his young son Israel to him. "My child, the Evil One surrounds the world with darkness, dark clouds which stop our prayers. He is in our flesh and in our dreams. But so long as you remember the sacred name of God, he cannot inhabit you. You are safe."

And after the father died, all the men gathered around the boy: uncles and friends, teachers and elders.  The community of men took the young Israel, and they cared for him, and after a time of mourning they sent him to off school. But the boy could not stay with his head bowed down, sitting and reading. Instead, his eyes would lift up out of the window and over the fields to the line of trees where the forest began. The wind would sing to him - and when the teacher's back was turned, he would run..., run..., run..., out, out, out, into the open air, flying on the breeze, out into the trees, until the teacher would chase him, catch him, and bring him back to his desk.

One day, Israel heard the call of earth and sky and ran away, but now the teacher said, "Let him go."

And so it was that the boy lived by himself in the wild places, sleeping in mossy hollows, eating berries. He learned the language of the beasts and birds and became the friend of all living things. Sometimes he would stand in silence and listen to the stillness and then he could hear the earth singing a sweet song praising God who made us all.

Now the time came when Israel returned to the world of humankind. He was ten years old. He took the job of collecting the children on their way to school, knocking on their doors and bidding them come.

Then he would lead them through the grass, picking the flowers for garlands that they would weave into their hair. Singing and dancing, they would march through the forest, taking pine boughs as banners which they waved above their heads; until they came to an open meadow where they would stand quietly in a circle. There, in the silence, they could hear the singing of the earth praising God who did make all. And their hearts gave forth prayers which shot like arrows to the heavenly throne.

Hearing these beautiful chords, the Messiah rose up on one elbow and wondered, "Is it time then? Is it time to return to the world?"

And Satan, the Evil One, saw about to happen that which was not yet supposed to be. Then he went before God and said, "Let me strive against these children who would stop my evil designs." And God said, "Strive."

So Satan went down to the surface of the world. He tried to enlist the insects, beasts, and birds in his terrible design, but none of them would turn against the boy Israel who loved and was loved so well.

It happened, near the village where the children lived, that there was a woodsman who had been cursed with a terrible curse. This creature had been born without a soul. At night, when the moon shone bright, the woodsman would fall upon his hands and knees. Hair would grow all over him. His nose and teeth would grow long and his ears would come to a point. He would run on all fours and howl like a wolf. At dawn, the creature would fall under a bush, exhausted, and return to the shape of a man.

Here, Satan found him asleep. The Evil One reached into the poor woodsman's chest and plucked out his heart. Then, Satan took his own heart of evil and placed it in the body of the woodsman.

When Israel led the children into the fields, as they came to the line of trees, the monster appeared. the heart of evil had made him grow to a terrible size. All the children fainted or ran.

When their parents heard what had happened, they refused to let the children go again with the boy Israel. But Israel said to them, "It was only a wolf who ran from the trees. The creature is gone. Trust me." And he spoke with such purity that on the next day the parents again gave him their children.

In the morning, Israel collected the children and led them into the fields. "Do not fear," he said to them. "Whatever happens, remember the name of God and stand fast."

And so it was, as they reached the edge of the forest, that the monster appeared. Immense, shoulders stretching from horizon to horizon, smoke and fire coming from its mouth and nose, creating dark clouds which blotted out the sun. The children shook with fright, but they did not run.

And Israel marched forth toward the beast, not stopping until he had entered into the very being of the monster, until he reached the heart of evil. Then Israel reached forth and took that black heart, filled with all the envy and cruelty of the world, and placed it in his hand.

When it lay in the boy's palm, the heart quivered like a bird with a broken wing. Poor wounded beast that it was, Israel felt its pain and understood that all the darkness of that heart came from fear and self-loathing.

Israel pitied that heart and took it and laid it upon the earth which opened wide. And the heart fell deep, deep into the forgiving world. Then Israel led the children to school.

The fate of the boy Israel was to go out into the world where he became a great teacher called the Baal Shem Tov. The children, without him, stopped going into the forest. They became again like their parents, serious with eyes turned down into their work.

Ah, but we have heard the story and know the mystery that waits for all to see when our eyes rise up to field and tree and sky. Let us go then, let us go to where the flowers blow in the wind that rushes past the trees. Let us stand in the midst of the forest where the earth heals all pain. Let our hearts sing songs of joy, and let us stand silently while the world in sweetness praises God who made us all.

In the wake of this story I could write ten thousand words…but it is far better to simply be silent.

The wound is where the light enters...

I'm preparing to live
Believe it or not, desiring life is just as difficult as preparing to die. Hope is painful, it takes more courage than I sometimes have and it is easier to deal with either living or dying rather than being open to either.

A dear friend gave me great feedback on my aforementioned preparations for death: "F*** you Ned," he said with all the heart and love and determination and passion and pain that sometimes only cursing can touch.

He was right of course. His question to me at 2:30AM, while sitting around a campfire, haunted me.

"Do you want to live?"

I couldn't answer him at first. It was too holy a query to quickly respond with an offhanded, "Of course," and in my heart I wasn't sure of the answer.

Nothing do I rescind from what I've said: letting go of the need to be alive is an essential part of being fully alive. I also refuse to ignore the data and I refuse to live in fear. Facing death, allowing death to roll over me (to the levels my subconscious will permit) has been altogether positive, not negative, even as it is disorienting and disruptive.  It has been gift, not burden, a blessing, not a curse.

For me, wanting life out of a repulsion of death is not life at all.  Gripping too tightly to life and trying to avoid the alternative is to be dead already.  Not considering death, not looking at the statistics, not attempting to be open, is negative.

My dear friend understands.  He gets it.  “Ok” says he, “fine…” and yet “I want you to live…here and now and for many decades to come.  Call me a greedy bastard.”  J

That next morning he and I take the Porsche my dear friend Andi lent me and cruise around the Puget Sound, the top down, the wind blowing through my sunscreen-stiffened hair.  He tells me of a therapist who worked with clients who had aids, back when HIV was a death sentence.  The entire practice was built around helping them deal with death…until medicine caught up to the virus and neutered it.  Now a practice that helped peopled destined to die had to help dead-men-walking prepare to live again.  You know what? The most amazing thing happened…many of them couldn’t flip back to life.  The transition to death was easier than dealing with the new hope and even the reality of a long life being ahead of them. 

I understand.

Somewhere in the posture of “living with open hands”, one must not let go of passion.  Somewhere in being willing to die, one must not lose a strong will to be alive here as long as it is to be.

This is the work of being in tension, of being open to both and never foreclosing on either possibility.  Had I accepted too readily an early death from cancer?  What does it look like to fight for life not from fear of death but from raw desire?  What does it mean to burn for being alive here, not because of an unwillingness to move on, but from an awareness of how good life is here?

The truth is that ever since my mother passed in November of 2000, I’ve felt OK with my own eventual death, even if it came prematurely.  But as life continues, as relationships with kids, neighbors, family, with Jamie, deepen, there are more and more reasons to live each day.  It is a simple thing to want to live for your kids, but what I was being posited by my dear friend was would I like to live for me? for my own pleasure?  I didn't immediately know.

Hope is a four letter word. 

To desire life one must hope, and hope can be devastating.  A few days ago a client brought in a newspaper article he had printed off.  The headline referenced a team in Zurich that had cured melanoma.  The leader of this team of scientists had been a former student of my client’s wife, and he had been following his career with great interest.  My client is an MIT grad and a retired rocket scientist from a certain large aerospace firm…he is not one prone to flights of fancy.  My cloud lifted and all of a sudden I could see life stretching out decades into my future—I could hardly wait to get to my computer to read more.  But hope aborted and crashed quickly as I discovered that while indeed it looks like this young man has cured melanoma, his methods would only work at this point on people at the very earliest of stages…it had no bearing for me…and so the roller coaster of hope goes…and I’m choosing to stay on...

Finally the tears

This week for the first time in this experience, a flood of tears were unleashed.  I had been wondering where they were; they were welcome before this but had shyly remained inside biding their time.

There is a community where men’s tears are not allowed to touch the earth.  So holy are they, that when they seep up from the heart and brim in the eyes, the elders gather round with receptacles in hand.  As they flow down the cheeks, through the beard and start to crash towards mother earth, the elders catch them—not one is wasted.  More precious than gold, each drop is holy water to be used to baptize the uninitiated into manhood.

My tears landed in my oatmeal at Beth’s on highway 99, a dive of a breakfast joint famous for 12 egg omelets, pancakes the size of hubcaps, and stacks of bacon that must require the life of more than one pig.  Beth’s is somehow repelling and compelling at the same time.  They boast an eclectic clientele and like the proverbial car accident from which you can’t turn away, watching people dig with gusto into what must be 20,000 calorie breakfasts is both awesome and awful.  They don’t sell “chicken” but rather “fowl.”  I think they should strike “pork” from their menu and replace it with “swine.” 

There was a story that brought the tears on that morning…a specific act of kindness remembered and related to a buddy who was in town for the Husky game.  But it wasn’t the profundity of the tale that opened the spigots, it seems like it could have been anything—they were simply ready to come.  The next morning with Jamie they visited me in greater numbers—great shuddering sobs appearing with no warning; I received them with hospitality and gratitude, and only hid my face to shield River from seeing his dad lose it…he doesn’t need to see that happen…not now.  Hope is still too fragile for him to bear a storm, his ego isn’t yet strong enough to stand on its own…but he is getting there.

Do you want to live?

“These tears are a good sign,” my 2:30 am visitor later opined as he stirred the coals of the fire. “Greif is a companion of desire, but not of apathy.”  “Thank God,” I thought to myself (or did I say it aloud?)  I know I want to want to live, I desire to desire, I don’t want to silently slip too-willingly into the next world without a hearty fight to remain longer…but this derivative, this seedling of passion isn’t the same as the fully grown tree…

 

His question had hung in the air for what seemed like hours and we thankfully had changed the subject, though part of me was still mulling it over.  We began discussing his life, his dreams, his spiritual journey, his recent romance, his giddiness over the same, and it was in being in relationship with another person, and hearing their story—not just living in my own—when it came to me.  "Yes damn it! I want to live."  I want to live not just for my kids, for my calling, for my wife, for my neighbors, but for the sure joy of loving and being loved here and now. 

And I believe that I will.  I will live.

Three steps forward-two steps back

This week has not only ushered in tears and rekindled desire but more news as come.  I discovered that a fellow parent of one of my son’s classmates has melanoma in his brain.  Additionally a person I’ve gotten to know very well through business dealings over the last years has bladder cancer.  I’ve poured ashes on my head before, but this week all I could muster was a hearty cursing of this brokenness we call cancer.  “Fuck” falls short, but it is a start when said well.  We don’t have words big enough to do the job.  In some cultures they tear their clothes, they wail and yell, they live in ashes at such news.  Why we feel the need to put on a face is beyond me.  That this culture is so flat-lined, over-medicated, numbed out, and terrified of death saddens me.

It isn’t all bad news.  I also heard from a friend from my past who boldly emailed hope to me and to all my family who then proceeded to drink in her words like September rain.  A medical doctor back east, she has been at a conference and felt moved to go to a session that made no sense for her to attend, in the process missing a session that she actually really was supposed to have attended.  It was only after half the time was spent discussing melanoma and she then spoke with the presenter, a cancer researcher who it appears has options for me, that she saw that it made complete sense why she had trusted her intuition…

 

God bless the scientists who see the patterns that lay beyond the explicative powers of science, who trust that the One Who Holds Us All, the Logos, the DNA of everything, that this mysterious God can be counted on more than pure Reason…I’m at the beginning of looking into the options she has described, but it appears that some flights to distant cities to consult with even more doctors may be in the cards. 

A humble request

A few weeks back I wrote the first blog post of my life.  It was done so partly as a way of disseminating information and letting people who know me, know me deeper.  It was a way to speak to my community about life with cancer, about hope, pain, death, life, and everything in-between.  It has been used for more than these original aims.  People who have never met me, and people who have never met people who have met me, are reading.  This isn’t about me; I know that.  Likely dear readers you are here for many different reasons…Maybe it is the fascination of watching the car crash or a Beth’s customer swallow a Denver omelet, hopefully it is more.

In a culture where it isn’t customary for us to face death head on, for us to embrace our mortality as a gift, there are some ancient truths that need to be re-learned.  They are nothing new for sure, nothing that hasn’t been taught and lived out a million times before, but they are things that need to continually to be said and lived, especially in this culture.

So if you’re still with me, I would like you to consider sharing this blog, re-posting this blog, to “like” this blog, to send this blog to a friend or co-worker.  It won’t be because that person knows me, but because perhaps the gifts of cancer need to be known by more of us.  As cheesy as it sounds, I actually believe that you will be making some kind of difference by sharing a story of a sacred wound and the grace that is eclipsing it.

 

This being human is a guest house,
Every morning a new arrival

A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor.
           Welcome and entertain them all!

Even if they’re a crowd of sorrows, who violently sweep your house empty of its furniture,
Still treat each guest honorably.
He may be clearing you out for some new delight.

The dark thought, the shame, the malice,
Meet them at the door laughing, and invite them in.

Be grateful for whoever comes, because each has been sent as a guide from beyond.

-Rumi

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