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.

A Silver Lining

Well I just got off the phone with my surgeon Dr. Byrd, and we have some good news.  The PT scan only shows cancer in the seroma I have on my neck, which means we have a chance that it is still contained.  Of course this scan only picks up larger chunks of cancer (say a grain or rice or bigger) and doesn't show very small and even microscopic cancerous cells that could be moving through my body.  So while we know that I don't have any other large concentrations of cancer beyond the cells in my seroma, this is far from the all clear.

It does mean that further surgery is a good idea, and we aren't limited to immunotherapy.  As soon as possible I'll be under the able hands of Dr. Byrd and he'll perform a different type of surgery than my previous procedure.  This time he'll take out not only the new tumor but also a larger number of lymph nodes in my neck (maybe all on my right side?), which will all be submitted for a biopsy.  So after the surgery, I'll be waiting again for more results of more lab results...but we'll take it.

While you never like to hear your cancer has spread from the original tumor to a new tumor, this is the best possible news we could have heard in terms of results of the PT scan.  The surgery will be longer and more invasive than the last one and I'll have to stay overnight at the UW, but these are trivial inconveniences.

Thanks for all your support, prayers, words, etc.  I'll write again as I have things to share...

Ned

Waiting for the news...

This past Friday I found out that my cancer is back…or actually that it was never gone, but had gone undetected until now.  Needless to say, not good news at all…Going into my surgery in early May, I knew that 10-15% of people receive an “NED” signal (No Evidence of Disease) from the sentinel lymph node biopsy which ends up being false…and I am in that group. 

I found out by luck.  Right now I have a large bump on my neck which is basically a ball of fluid called seroma.  Seroma is common after a large variety of surgeries and will usually go away by itself after a few weeks.  Mine was bothersome so I went in to get it drained to speed up the process.  They weren’t able to drain it, but they did get some liquid out of it and since they had it, decided to test it as a matter of procedure.  It came back positive for cancer cells. 

In early July Jamie and I went to Alaska with all the kids to serve at a camp up there for kids and teens.  They asked me to give a talk the last night about my experience with cancer, and knowing that River would be listening in, I found some time to take him out for a walk.  We were sitting on a huge old growth log, looking across the water at a glacier perched halfway up an 8000’ mountain.  Before our eyes the glacier was slowly dying as a 1000’ foot waterfall of melt cascaded down the cliffs and towards the sea.  On that log I told him more details about my cancer…but was able to do so from the comfortable position that it was likely all off my body… 

Telling River the more recent news has been more disruptive for him.  The other kids are still too naïve to understand the implications, but they are not lost on River.  I can no longer go into a room where he is and not receive a long hug.  He was the one who stated the possibility that I might die.  It takes great courage for a kid not to be told that, but to realize and state it on his own.

Yesterday I had a PT scan to see if they can determine how far the cancer has spread.  I should know the preliminary results before the weekend, but the treatment plan will likely still be up in the air.  Right now there are some amazing immune system treatments in clinical trials that are taking people who were previously without hope and helping a great number of them.  It seems that we are on the verge of major breakthroughs in how melanoma and other cancers are treated, and I’m hopeful that if mine progresses slowly enough that I’ll be able to take advantage of them!  The current treatments don’t excite me too much, but I must admit that there is a lot more for me to learn about them.

As you can imagine the news has been disruptive for all of us.  You’re perhaps in that group for whom it is disruptive.  Cancer doesn’t happen to individuals, it happens to families, friends, co-workers, clients, etc.  In that sense, my disease is not my own but is being carried by many, and I'm very grateful that I'm not alone in this.

Hearing the news has made the last number of days quite the whirlwind.  On one hand, it has taken Jamie and I right back to the place where we are uber-present to each other and our kids, savoring each ray of sun, each meal with friends, each moment with each other.  It has also been very surreal.  To face the reality that I have cancer, that statistics say that most likely I will die from this cancer—these are strange waters.  It is difficult to have the gravity of the meaning fully land—to be emotionally attached to the implications.   I think that until I know more about the status of the disease and how far it has spread, I’m not going to let myself really go there all the way. 

I don’t feel any fear.  My biggest concern isn’t for myself but rather for Jamie and the kids.  If I die, she will be the one left to deal with the challenges I will leave.  I don't feel anger.  People live and die all the time and there is nothing that seems unfair that it is happening to me.

People have commented that they don’t know what to say, that they are at a loss for words.  Let me just say that this is OK, one needn’t say anything, simply being with me is enough.  Words of solidarity or words that describe how you’re feeling, like “I’m with you, you're not alone” or “I’m pulling for you,” or “my heart is breaking with you,” or even “I feel awkward and don’t know what to say.”  All of these are wonderful ways of being present to one’s own feelings and to me. 

What is unhelpful for me is being instructed on how I should be, think or feel.  Advice like, “Stay positive,” or “remember the power of positive thinking” are not welcome words.  That isn’t encouragement to me, it rather feels like someone is telling me how I need to react to make them feel more comfortable with the situation.  Personally, I’m comfortable being blue at times.  I feel comfortable facing reality head on without resorting into naïve optimism (or falling into pessimistic fatalism/depression).  The reality is that I could live 90 years, but most likely I’ll die in the next five.  I see no need to ignore either possibility, and will continue to hold both.  I’m sick of being told to stay positive.  I think it comes from people’s own fear of death and view that somehow death is the worst thing and must be avoided at all costs.  To me there are many things worse than death, including existing in denial or naiveté. 

This isn’t to say I’m not grateful for positive people.  My father-in-law Burch is the most positive person I’ve ever known, but he also can be serious and doesn’t dismiss the gravity of the situation.  He is hopeful, but doesn’t somehow disregard the likelihood of hope being obliterated.

 I guess I believe in being hopeful, but not necessarily positive.  The former feels like having a posture of a faithful openness and desire to be fully alive, but not demanding that it play out my way.  The later seems to come from a clinging to life on earth, holding on for dear life to each breath, and refusing to welcome or even consider the alternative.

I have more to say on all of this, but for now my kids are calling…  I will update when I can…

Premature Good News 5/20/13

 

The following was sent on 5/20/13 after having recieved an initial clear report.

Well I have some good news to share tonight: my cancer hasn’t spread to the lymphatic system. This is good news; it’s great news. It means that I’ll have to cancel my early retirement party, round the world tour and as my dad would say, I can resume buying green bananas. Of course, not all is clear sailing. While this is among the best possible results from the surgery, the tumor was bigger than they thought, it seems to have grown from the time I had my first appointment with my surgeon until I actually had my surgery and I’m definitely a stage IIB which confirms my original concerns.

Stage IIb has 5 year survival rates of around 70% and 10 year survival rates of 57%. So while I’m not stage IIIb and the cancer looks to have been fully cut off my body for now, with melanoma you’re never out of the woods. In fact it is one of the only types of cancer that not only has no cure, but also continues to have increasingly worse survival odds the farther out you go in time. With many/most cancers, once you’re cancer free for some period of time, say five years, you’re considered cured as the odds that it comes back become so small as to be insignificant. Not so with melanoma. The odds of it returning are greater in the first five years than in years 6-10, which are in turn greater than years 11-15, so the longer you go the more secure you can feel, but the risk is still there and most docs won’t ever declare you cured of melanoma like they would with most other types of cancer. As one doc put it, you will know you were cured of melanoma when you die from something else! That actually made me laugh when I read it…got to find humor where you can.

I haven’t yet actually talked to my surgeon about the pathology report yet, the nurse was just forwarding it to me to read for myself but she hadn’t had a chance to talk with Dr. Byrd about it. She didn’t want to give the all-clear sound because she couldn’t tell if the margins were large enough. I guess I’ll hear from her again tomorrow about this. Theoretically, if the margins are inadequate, I’ll have to go back for more surgery which would entail taking out more tissue followed by reconstructive surgery and skin grafts by a plastic surgery.

During the past surgery Dr. Byrd came out and told Jamie that he might have severed a nerve to my face which would have resulted in me with a limp/paralyzed cheek and mouth on one side. Jamie didn’t know until seeing me in the recovery room if this had indeed happened. The prospect of them digging around again and doing what Dr. Byrd had previously described as “major reconstructive surgery” doesn’t sound appealing. My bet is that I won’t need more surgery but I guess I won’t know for sure until tomorrow. If you don’t hear from me tomorrow about it, then assume I’m in the clear.

All in all I feel much better today. Regardless of the statistics, you have to plan on being alive. I don’t see how sitting around expecting the worst will help anything. However, I also don’t view this as over or behind me either...that seems to be simply a naïve assumption as well. I feel comfortable with the ambivalence, with living in the tension of perhaps having a long normal life or maybe dying in the next few years.

This seems to be a very healthy place to be, indeed I consider it a gift. Rather than being allowed to exist with the illusion that I’ll live forever, I get to have a constant reminder that our time here isn’t permanent and to hold it with open hands. Rather than being allowed to have a stranglehold on life and a fear of one day no longer having a pulse, I get to regularly have a gentle nudge to let go of being alive here and as a result be fully alive while I am here. As my spiritual father puts it, “die before you die”.

Surgery was a much bigger deal than I thought it would be. Going into it I was in a great state of mind and spirit and really felt quite strong. But since then this past week has seen a much larger range of emotions as I’ve also felt exhausted, frail, down, very stressed, and depressed. I think that it felt like as much letting go as one can do, as much as one can live with open hands and an open heart, we end up being taken to new depths where we are shown where we have even more work to do.

This past week was an experience in having to let go…ever more and yet again. Letting go is certainly not a onetime affair, it is a process as well as a posture, and it is never mastered no matter how long we practice it. I feel fortunate to again be taken to a place where I’m in over my head, a place of powerlessness where I must rely on love, grace, and on the support of all of you. I feel fortunate to be able to have been shown a few more places where I need to release my grasping for control, for power, for my ability to impose my will. Sensing one’s lostness is an important place on the journey of being deeply found, I think it always must predicate new depths of development almost by definition.

I did have some great moments in the last week as I got to spend some quality time with Burch delivering gravel to a rental property, fishing, and buying an old 1989 Ford F150 for projects on our new Greenwood home which we’re enjoying. Jamie has absolutely blown me away with her love, strength and energy through this whole thing and I have felt tremendously lucky to have her on my side. But I’ve also been short tempered with all the kids at times, had to apologize to Truss for over-reacting to his not being a full grown man already, and have felt stressed over insignificant things that shouldn’t bother me. Ah well, failing is part of life. My struggles to be the kind of father I wish to be will never be over.

Thanks for all your love, support, prayers, thoughts, calls, etc. I don’t know what the next steps are…(likely it will be monitoring and hoping that it doesn’t reappear) but whatever happens I know I’m not alone in this adventure and for that I’m very grateful.