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