Below is the slideshow of pictures from Peter's life that was shown at his memorial service a week ago Friday.

 

The life that is truly life

We write with grateful but heavy hearts to share the news of Peter's passing this morning, May 18th, at 7:40 a.m. The loss we feel is profound, and yet we rejoice in faith that he is even now entering into the light of God's presence. He went in peace, surrounded by our prayers.

For those of you who are in the area and would like to come, a memorial service in honor of Peter's life will be held next Friday, May 24 at 2:30pm at Calvin Presbyterian Church in Corvallis. The reception following the service will be held at our home.

These past few weeks have been intense and sad, as we've cared for Peter in his steady decline. For those of you who are counting, Peter's death comes just a few days short of the 2-4 month prognosis his doctors gave us in March. If Peter were here to write this post, he'd certainly have plenty of conjectures about how and why his cancer went the way it did towards the end and what it all means medically. The truth is that we will never know - we simply rest in thanksgiving for Christ's presence with us, the Great Physician who knows the inner workings of our bodies and ordains the days of our life, and the moment of our death. Cancer did not have the final word in Peter's story. His journey has only begun now that he has passed into the "life that is truly life" (1 Tim. 6:19), where we trust he will live with God forever in his resurrected body.

We want to thank you all for your prayers, kind thoughts, phone calls, blog comments, messages, and words of encouragement during this time - our whole family has felt your care so deeply and truly sense our unity in Christ's love. We're especially thankful for the season of Pentecost that is now upon us, and trust that the Holy Spirit will come to our hearts to illuminate and console, as Jesus promised. We do not mourn as those who have no hope.

Peter L. Ogle, asleep in the Lord.

Ascension hope

It's a strange juxtaposition to watch the lush unfurling of spring as we accompany dad in his gradual decline. Life outside is burgeoning as his life wanes. These days have been so beautiful - warm, and sunny, with highs in the 80s - and yet quite bittersweet. We are grateful, but sad. It has been especially poignant to follow the rhythms of the liturgical season; the readings and prayers during the time between Easter and Pentecost are full of jubilation at Christ's resurrection, the promise of his presence with us, the hope that eternal life with him awaits us.

Tomorrow is the day when the Church remembers Christ's ascension to heaven, 40 days after the resurrection. Jesus said that he was leaving to go and prepare a place for us, and that he wouldn't leave us alone but would send the Holy Spirit to be our comforter and advocate. How we need that assurance during this difficult time.

In the past week or so, dad has been sleeping a lot (20+) hours a day and doesn't have energy to do much more than the minimum that his basic needs demand. On Monday, hospice sent a hospital bed that we set up in the living room, where dad is now spending most of his time. He has intermittent periods of wakefulness, but isn't able to sustain much conversation. He eats, but not a lot. Nick and I sometimes read to him. In the morning we've continued to pray together as a family. All of dad's siblings and his mother have been here to visit within the past week or two, and those have been especially sweet times, even when he has been less lucid. We've had lots of help and company when we've needed it, and plenty of quiet downtime with just the five of us too.

As you can imagine, it is difficult to write this post. After all these years and so many bends in the road in my dad's journey with cancer, we are finally approaching the end. For as much as we are all at peace, having said all we can say and done all we can do, it still feels surreal to think that his death is so imminent. Our task now is to be present, to simply be with him, together, as he prepares to embark on his journey home. As his earthly body quietly shuts down, we rest in hope that he will be raised again in a heavenly body. And we trust that he is not "leaving" us, but rather going before us to that place Jesus promised to prepare.

"I know that my Redeemer lives and on the last day I shall rise again. In my body I shall look on God, my Savior. I myself shall see him; my own eyes will gaze upon him." (Job 19:25-27)

Azaleas in bloom

Dear friends and family,

Nick and I are trying out a new form of communication on The Ogler. If it doesn't work, we’ll try something else, but our current model of having me sit down and write short essays is becoming increasingly difficult. So instead, I will dictate to Nick or whoever else among my loving family members, and we’ll see if I can muster a little intelligence or insight.

It is important to me to say what I feel needs to be said. So we’ll give this a whirl.

I would like to be able to speak with each of you, individually; but that won’t be possible. Just talking to myself tires me out. I am able and happy to read emails from you also, so please keep them coming. Since I am not getting out much, this is how I can stay in touch with my loved ones.

No big changes overall in my physical condition. The fatigue continues, deepens if anything. This is a natural progression for brain cancer. I wish I could hope for better, but I accept this as the natural process that we work around the best we can. Ellen and the kids are great. I’m getting plenty of nutritious food, thanks to the many contributions of prepared meals by so many of those whom we love. It would be hard for us to get this all done by ourselves.

We have been blessed by daily times of prayer together, in which we all can speak with God about the significance and meaning of these days. There have been so many wonderful reminiscences. We've laughed and shared smiles as we look through photo albums of when the children were small—and Peter had hair. The blessings of family have been so dear to all of us. Being together has been in itself the best of ways to spend our time.

It helps to have had many warm, sunny days in which we have all gotten out into the garden, to do some cleanup and spring prep. I never guessed we’d get the garden whipped into shape this spring, but thanks to my willing minions (including my sisters), we've done it.  The azaleas are blooming, and the berries fattening up in anticipation of more golden days ahead. We can smell the lilac already.

Living is hard, but life is good. We are all blessed to be a part of God’s great creation. 

Landing

It's me (Allison), stepping in again as guest blogger to provide an update on the past few days. There's not too much to report in terms of major events - we've simply continued to enjoy our time together and to help make dad as comfortable as possible. He's been sleeping more and is very fatigued, but he's still able to eat (and enjoy!) food and be present in conversation with us and with visitors. He's had no other major headaches and isn't waking up as often during the night with back pain. His major complaint for the time being is just the fatigue and mental malaise.

In our visit this morning with the hospice nurse, Robert, we discussed some questions regarding what to expect in the coming weeks. Without going into the specifics, we know that we can expect dad's overall energy level to continue to gradually wane, with daily ebbs and flows. Robert likened this process to the landing of an airplane, reiterating that his role is to help manage the turbulence and allow dad to have a "smooth landing." He indicated that dad likely has many more weeks to enjoy with family and friends, but we are all mindful of how quickly these days pass and our desire to spend them well.

We're grateful for the hospice care, as it complements our efforts to accompany dad in what Robert alludes to with the airplane analogy. Dad has written before of having lived a good life and now wanting to die a good death. And he knows that his dying will be merely a passage into the life which is truly life. Over the last few weeks, dad has voiced that he is not in any hurry to die, but that he is ready. It continues to be a privilege for us to walk with him in these days, to rejoice even in this sacred threshold, this unique transition of life that Mother Teresa dared to call our "coronation." We can only see death in this light because of our faith in the resurrection. Life on earth is sweet, to which my dad's life bears testament, but the joys of heaven will be sweeter still, and so we have hope.

We enjoyed the sweetness of a warm April day yesterday, taking advantage of a visit from my dad's sisters (Kathy and Liz) and brother-in-law (Dave) to do some work in the garden. After an hour or so of weeding, the siblings headed down to the local nursery so my dad could pick out some flowers to fill the empty spots in a few beds. The garden continues to be a source of beauty and refreshment for us, especially on these warm days.

My dad has also enjoyed several other visits and phone calls from good friends in recent days. It's difficult for him to sustain long conversations, but he is delighted and encouraged to spend time with people who have meant so much to him, sometimes over the length of many years. It's a gift for the rest of us too, to witness the way in which dad has cultivated relationships with very different sorts of people and how he has been a vessel of God's love in his friendships.

Dad does hope to write again on the Ogler, but I'll continue to fill in for the days when he lacks the energy to write himself.

God, give me the words

This shorter blog post does not represent “throwing in the towel” but is an indication that it’s become increasingly difficult to sustain my concentration. I have so much to say, so much to grasp after, yet my mental and physical energy seems to dwindle away. And so I adjust, as we must all to infirmity, pain and weakness of all kinds. God may yet give me time, which we will see in the days ahead. My children have proved able, even impassioned blogger substitutes. I’m sure you will hear from them in the future in my absence.

This all comes up because I haven’t felt well in the past week. It’s pain and weakness mostly, and mental malaise. I can attribute this partly to the completion of radiation treatment of a spinal mass subsequent to everything else I've experienced in terms of symptoms and treatment. I’m wearing down. I finished 10 rounds of focused radiation on a spinal mass this past week and I hope to rebound as the swelling gradually subsides. The other effects of recent treatment will also continue to work out their effects.

I’m sleeping well, with only occasional headaches, and have enjoyed good visits with friends and family. More to come.

A place of springs

Guest blogger: Allison Ciraulo

Lord Jesus Christ, take all of my freedom, my memory, my understanding and my entire will. All that I have and cherish You have given me. I surrender it all to be guided by Your holy will. Your grace and Your love are wealth enough for me. Give me only these, Lord Jesus, and I ask for nothing more. Amen.

This prayer, written by St. Ignatius of Loyola, seems a fitting one to pray during these days. While we've had more active moments, with a number of visitors and several meetings with the hospice team, most of the days this week were still pretty quiet. Dad had a bad headache Sunday night that left him in a fog for most of Monday, and other pains have ebbed and flowed throughout the week. We've spent quite a few hours together on the living room couch, all five of us with Nick home now. “Couch time,” as we affectionately refer to it, usually involves talking about life, processing things that are happening, and sometimes praying together as we did this morning.

This time spent together has been a great blessing. Our moments of prayer help to orient our days and keep us in God’s peace. This season of my dad’s life is a gift for all of us, but it’s not always easy to maintain that perspective. We need Jesus to invite us every day to continue the journey and we need to be reminded that we will be given everything we need in order to keep walking. We expect that there will continue to be challenges, both physical and emotional, in the coming days and weeks, but rest in the providence of God and in the comfort of one another’s companionship. We're also grateful for the friends and extended family members who are accompanying us so graciously, many of you reading this blog who have given of yourselves and helped to carry our burdens.

Gorgeous days like this also do a lot to lift our spirits. My dad and I spent the better part of an hour this afternoon puttering around the garden and doing some weeding. With the 4WD walker he was able to get around pretty well, perching on the walker seat to weed the raised beds. The temps are forecasted to be in the mid-70s through next week, so we are hoping to get plenty of good work done outside in the next few days.

My dad plans to continue sharing his journey with all of you through this blog, even if some posts come from yours truly filling in as guest blogger. Please stay tuned. This may indeed be the valley of the shadow of death, but God makes it a place of springs, a garden that blooms as surely as the springtime now unfolding before our eyes.

Sloppy synapses

Well, the synapses are getting a little sloppy but I do want to keep writing while I can. Bear with me. I hold out hope for better days when I’m stronger of body and mind and can address something more substantial than this simple entry.

I have a final radiotherapy session tomorrow, after which I’m hoping some of my fatigue will begin to lift. I’m getting around OK with a walker these days; I intend to upgrade soon to the 4WD model (not wi-fi enabled). I’m not getting much exercise, but perhaps that will come as the nerves in my spine settle down and I become more comfortable again. I’ve had my meds adjusted so am back to sleeping well again at night. And I have no pain during the day. In sum, things aren’t too bad.

We signed up officially for hospice on Friday. This doesn’t change things much, other than making palliative care more immediately available, if needed. I’m relieved to know they can have a nurse here within minutes; the load for arranging for my medical care thus doesn’t fall totally on family. Plus I get massages at home on demand. What a deal.

Nick has wrapped up his job in Seattle, and will be arriving home tomorrow. The nest has suddenly filled back up—at just the right moment. As Ellen continues to work, with my complete approval, this assures that someone is around to help me out when I need it. I wouldn’t mind having the chauffeur service so much if it wasn’t mandatory.

I was able to get out yesterday and direct Allie and Jon with some weeding, as I’m not able to get anything done in the garden right now. Again, maybe soon. With the April showers and warm temps, the Oregon jungle is undergoing its annual rejuvenation. What a riot of fecundity. I can sit in my recliner and just watch the grass grow—figuratively speaking, at least.

Adding up the number of my days

Have you ever added up the number of your days? If you’re at all like me, you probably have. I can remember doing the math when I was a kid, as someone with an overdeveloped fear of death, and not being happy with the answer. Long before I became a Christian I was an existentialist: someone free to make choices in a big world that I sensed to be largely hostile and unexplainable. I wanted “my number” to be as big as possible. If my life here on earth could not be explained, then how much less that which came after it. The idea of death literally scared the hell out of me.

I can look back now and thank God for that great gift. My idea of hell was not so much a place I might end up as a fear of annihilation—the final and complete cessation of all consciousness. An end to “me.” By God’s grace, I was eventually released from this prison of panic, with a vision of spending eternity with God in his new creation supplanting it: a conviction that life continues after death in greater richness and joy than we can imagine on earth. Some call it heaven. My fears thus relieved, my hope secured, I was set free and life transformed into something much bigger and better. To emphasize my point musically, click here to hear a stunning version of Amazing Grace sung by Judy Collins and the Harlem Boys Choir.

I did the math to calculate “my number” again this afternoon. Now that the end of my days appears to be within sight, I figured it would help to have a hard figure in mind—at least for planning purposes. At the time of my birth, presuming a life expectancy of 75 years, my days could be expected to reach more than 27,000—a large number by any measure. As a kid I saw them stretching out ahead of me, seemingly a luxury of time, but ultimately a finite number. I figured I could safely dismiss the passing of the first 10,000 or 20,000 days before needing to figure out what came next. There was always another day to reckon with destiny. Time was cheap.

No more. As of my last visit with Dr. Curti two weeks ago, I was told I could expect to live another 100 days or so based on his medical prognosis. The exact number is not important, as predictions of my survival have been wrong before and I’m ready for whatever comes anyway. But it’s pretty sobering to hold that number “100” in my mind, knowing that today it’s more like 80, will be 79 tomorrow, 78 on Thursday, ad finem. I hope I’m wrong about this, and that I’ll be embarrassed to discover months from now that things turned out differently. It would be just like melanoma to pull such a stunt, given its wildly unpredictable biology.

I had hoped to be on a road trip out Route 66 this week with a friend, but am instead at home continuing my radiation treatment for the tumor in my spine and spending time with my N&D (nearest and dearest).  Lord willing, I’ll be able to see more of the world beyond the walls of our home later. 80 days might stretch to 180. The therapy seems to be helping. I have minimal pain at night in my lower back, as I did before. I’m holding out hope that if the cancer shrinks enough, I’ll regain strength in my legs and resume normal walking. If you pray, that’s something you might speak to God about on my behalf. Using a walker, I’m lucky to get to the end of the street and back.

In recent days I’ve had the privilege and challenge of saying good-by to people I love. I will continue to do so in what time I have. When all pretense and artifice is stripped away, when every encounter brings with it a sense of finality, some real communication begins. It helps that we don’t have mostly cancer “warfare” to talk about; the artillery is spent. I believe the interpretative constructs we use reveal the narrowness of our minds. In serious illness, our experiences are bounded by verbal armories and the assumption of perpetual conflict. We don’t grow. Rather than permitting the interruptions of our familiar lives (like cancer) to enrich these lives, we impose timeworn patterns of thought upon the experience, reducing it and closing it against insight and discovery.

As author and cancer-survivor Walter Wangerin has written, we fall into patterns that crush into powder our adventures into the unknown. And so “a battle with cancer” is shaped to conform to a schoolyard brawl or the daily news. Nothing new. Nothing to call us into an ever newer light.

Having surrendered in that battle, I am more than ever experiencing the alternative blessing of hearing the collective wisdom of many who have suffered, lived long lives, or who simply have something important to tell me. I welcome their counsel. I will give them mine, such as they wish to receive it. This is Thoreau’s marrow. This is where real life can be found.

Ellen, my family and I are so grateful that you’ve accompanied us all this way. As Wangerin has written in Letters from the Land of Cancer, you’ve carried us when our legs were too weak to walk, our tribe who bears with us the wayward choices of our cells as you have born the sometimes wayward choices of our individual lives.

Were I to write these blog posts without others to receive them, they would lose dimension and resonance. But to write, as it were, "before a chorus of ears and under a choir of minds—this grants me the sense of a surrounding congregation singing glory-hymns, yes, even now, right now, as I sit typing to you.”

And as new news comes, and the brain’s synapses continue to fire, I’ll write again.

Waving the white flag

I needed a day like yesterday to be humbled and driven back to my knees before God. First, I had my first of 10 radiation sessions to treat the hot-dog-sized tumor in my spine. There is no pain from this mass nor from the treatment itself, but also no quick or easy relief. My legs are very weak. I use a cane now to get around the house, and if this nerve compression (Cauda Equina Syndrome) worsens, I could end up paraplegic. The radiation should eventually calm the nerves in the upper legs as they exit my spine, but there’s no guarantee it will. It’s very hard for me to accept this slow loss of mobility. I may take to a walker if I don’t soon regain muscular strength.

I also got an email from Dr. Curti yesterday stating that melanoma specialists at Fred Hutchinson Cancer Center in Seattle agreed with his plan for palliative radiation to the spine and did not think that gamma knife would benefit the brain for the reasons that were explained to me last week (e.g. since melanoma cells are traveling through the cerebral-spinal fluid, there will only be more deposits in the near term). In addition, the large area that needs to be treated with gamma knife would likely result in negative cognitive changes. Although another course of ipi or temozolomide chemotherapy could be offered, they have a low probability of response and a high probability of side effects. There appear to be no clinical trials of melanoma drugs on the West Coast for which I might be eligible.

When your medical history includes as many comebacks as mine has, it’s easy to imagine I must have another one in me. Realistically, I don’t. I believe I‘ve been tested this week: to resist the temptation to seek more curative treatment in the hope that I can yet beat melanoma. Almost every patient with advanced cancer will know what I mean by this. No matter how strong your character or religious convictions, it’s a brutal decision to finally wave the white flag. To say, “Enough. I’m done.” To know there’s no alternative to surrendering to the biological imperative that God has designed into our genes. To tell yourself, “Death is near.”

I have no particular sense of what I want my last days or weeks to look like. I’ve lived my bucket list—been everywhere I wanted to go and done all I needed to do. I’ve been blessed in life beyond measure, to which I hope this blog is testament. I now mostly want to be around family and friends, most of whom are fortuitously located nearby (two of them down a flight of stairs!). Should I regain strength in my legs, I hope to get back into more of God’s creation this spring and summer and to enjoy its pleasures. If I don’t, I have the consolation of the peace of Jesus, of prayer, of reading and of conversation with the people I love most. My days are full.

Having lived a good life, I pray to God that I would now die a good death. While I am staunchly pro-life, I am not equally anti-death. The devaluing of life at its end as at its conception is equally abhorrent. Assessing the value of life at its completion is different, however, than the same assessment at its beginning. Destroying life at its beginning rejects God’s sovereign arrangement in creating it, abandons hope in God’s sufficient grace and does not trust in God’s ability to care for what he creates.

Life’s sanctity, however, does not demand its preservation at all costs when a lifetime is fulfilled. Those Christians who say the sanctity of life requires us to use any medical means to stay alive contribute to our inability to routinely teach and practice dying well. Let it never be said about me that “I have fought the good fight” (2 Timothy 4:7), as this quote from the apostle Paul is typically misconstrued to be less about spiritual things than about trying every medical option to stay alive. My gradual dying has given me the advantage of advanced warning. I don’t want to squander the gift of generous time for end-of-life preparation than most people are given. In many respects, the last few years have been the most precious of my life. I’ve been able to accomplish what many people are not granted in a sudden death.

I met with a social-worker friend this afternoon to talk about hospice care and the choices to be made. It was a good exchange of practical information, but also a little surreal as Martha is someone with whom I've run many times in both formal events and just around the streets and trails of our neighborhood. I haven’t run in three months now and likely won’t again, which in itself is a small death. The process of gradually giving up things I love is sad, but clearly part of God’s plan. I take comfort in knowing that what I love most—my wife, my family and my friends—will be the last thing I see and am blessed by in this life. He leaves us with the best till the end.

If I can 1) glorify God by living a full life, 2) accept his plan for its end, 3) trust in continued life in Christ, and 4) know that that he will see me through from this world to the next, then I live contentedly and gratefully. I fear nothing.

MRI of the soul

This has been a week of deep introspection. Adding to the usual spiritual intensity of Holy Week were a set of MRI scans made on Monday and Tuesday in which my brain and spine were interrogated, not by the Holy Spirit, but by magnetic and radio-frequency energy that makes MRI the diagnostic powerhouse that it is. Combined with prayer and contemplation, I’ve been examined into the deepest recesses of who I am.

My previous post describes in brief what the MRI scans discovered. The images were not a pretty sight. Filling much of the space from which my brain tumor was excised last August is a moonscape of recurrent melanoma—a heterogenous jumble of rind and pith. If I hadn’t seen for myself just how large and extensive the mets were, I don’t think I would have believed it. I can understand why surgery     and radiation therapy are not good options for me. The visual evidence is damning.

Complicating my medical outlook is that melanoma cells have migrated from the tumor bed on the right side to the brain’s left ventricle and established a 3-mm met there. With such open access to the cerebral spinal fluid, cells have also floated down the spine and set up colonies, including a large lesion that descends 4 cm below L1. This region will be treated by standard radiotherapy starting next week, which should palliate the worst of the symptoms caused by the tumor (e.g. low back pain) and make me more comfortable.

This wide dissemination of melanoma weakens what little logic remains for treating the really serious mets in the brain. If they were the full extent of my problems, a good gamma knife team might do me some good. Unfortunately--to employ the medical cliché of the week--the cows are now out of the barn. Even though the only evidence of melanoma outside of the central nervous system is one small met in my right axilla, the brain is a notoriously difficult organ to treat and mine is in a hell of a mess. We’ve done about as much surgery and radiotherapy as can be tolerated without turning my brain to mush. I’m not willing to make that tradeoff given that I’ve already seen how hard it is claw back from brain treatment.

So while I reserve the right to change my mind, my decision—made with input from my family—is to not intervene in the brain. I met separately this week with my medical oncologist, radiation oncologist and neurosurgeon, and they all agree that Gamma Knife is unlikely to do me much good therapeutically and almost certainly would diminish my quality of life in the two to four months they believe I have to live. Dr. Curti, who does melanoma research himself, will check with specialists elsewhere to make sure there isn’t a clinical trial he doesn’t know about that might be open to patients with brain mets (which is rare) and for which the downside of treatment isn’t worse than what I’ve already experienced. I don’t regret having tried the ipi-whole brain radiation regimen; that was our best shot. It probably bought me some time, but was very unpleasant and I’m seriously disinclined to do anything like it again.

So in the last three days I’ve been assimilating the implications of my do-nothing strategy (other than palliative radiation to the spine). This is where the examination of my heart during Holy Week comes in. I’ve asked God for his clear diagnosis on my spiritual health. While probing our heart of hearts requires peace, calm and focused attention, it at least doesn't require the use of technology. This is a private exercise open to us all. I know that corruption lies within my heart and that this is where healing is needed most. While the odds of surviving the cancer in my brain are pretty slim, I know that God’s grace covers my heart. I will live into eternity based on the promises he has already made to me.

“Physicians will not heal you, for you will die in the end, but it is I who will heal you and make your body immortal.” –Pascal’s Pensees

I will in coming days be spending time with family and friends, resting as needed, and talking with God pretty much nonstop. As best as I am able, I will be sucking out the marrow of life. While I don’t know the number of my days, I expect to enjoy each of them to the extent my health allows. Radiotherapy of my spine should make my legs stronger in coming weeks so that I hopefully can walk comfortably again. We’ll be spending Easter morning with my Mom at her church in the Portland area, and tucking afterwards into what I expect will be a tasty brunch. After that we’ll head to our beach house near Waldport and enjoy a day or two of unusually mild spring weather. Is there any finer sight in Oregon than a blue-green corrugation of wild surf stretching out to a sky of robin's egg blue. Well, there may be, but this is one of the best for those of us lucky enough to live here.

I’m not happy about how melanoma has sidetracked the life I’d hoped to have while approaching my 60^th birthday, but none of us gets a guarantee of our physical health as we age. We all are mortal. We all will die. I’ve been blessed with a splendid life and I know that when it ends it’s just beginning. On this Easter eve, my heart and mind turn to Jesus in the tomb, about to explode forth in new light and new life. His resurrection presages our own. Hallelujah!

Recurrence

What follows comes from an email we sent this morning to our nearest and dearest, and that does the job of cutting to the chase. I’ve decided to post it here rather than trying to find some other way to say essentially the same thing. There’s so much I do want to say, but that can come later. At this time, I just want to rest, pray and listen carefully to whatever God has to tell me. More soon.

Dear friends: As some of you know, we've been to Portland the last two days for my quarterly scans and a consultation with Dr. Curti, my medical oncologist. I'm afraid we got bad news this time. The melanoma has recurred aggressively in my brain and spread to my spine. This news comes as a shock but not a surprise, if that makes sense to you. I've lived with melanoma for years and in the absence of serious symptoms, figured I was good for many more miles. Well, maybe not.

Treatment in these circumstances would typically be a form of radiotherapy called Gamma Knife, but my doctors have concluded that the cancer is too extensive to treat without causing grievous damage to my brain function and at any rate wouldn't prevent its recurrence. I would likely lose part of my sight and motion. I might spend months in rehab, during which new mets would likely form. The prognosis is dire, but we are not without hope. Ellen and I and rest of the family are in prayer for God's guidance and we're at peace with whatever should happen. We'll be making a decision in days ahead whether to pursue other options or not.

Thanks for your thoughts and prayers.

Song of hope

 

An artist friend sent this verse of a Dickinson poem to me several years ago, relatively early in my cancer journey. The calligraphy, which she penned herself, is matted and framed and sits atop my bedroom dresser. I’ve read that this simple, metaphorical description of hope is typical of Dickinson’s homiletic style, derived from Psalms and religious hymns. It continuously inspires me.

We hadn’t seen KL in 20 years or so when she, her husband Blair, and adult son Brett stopped by for a short visit earlier this week on a drive down the West Coast. KL has survived a bout of breast cancer herself, so knows something personal about this bird that perches in the soul. I got to finally thank her in person for her thoughtful gift, but more importantly spend time with a family we love and respect and for whom “hope” is more than wishful thinking.

In his book, “Turn my Mourning Into Dancing,” Henri Nouwen takes several runs at defining what he means by “hope.” His best attempt, in my opinion, is the following: “For those who have eyes to see and ears to hear, much in our fleeting lives is not passing but lasting, not dying but coming to life, not temporary but eternal. Amid the fragility of our lives, we have wonderful reason for hope.”

A briefer definition is that hope is the life of the divine Spirit within us. Become aware of this mysterious presence and life takes on deeper meaning.

In the Gospel of John (6:40), the apostle writes that anyone who believes in Jesus has eternal life. That’s a radical, even revolutionary thought, that in this fleeting, temporary world he comes to plant the seed of eternal life. Nouwen adds that in many ways this is what is meant by the term “the spiritual life”—the nurturing of the eternal amid the temporal, the lasting within the passing, God’s presence in the human family. We often see this presence in the friends and family who surround us. His love is demonstrated through the love of others with whom we may share affection but no social obligation. I would call this hidden reality “grace,” when people who have not laid eyes on each other in years can reconnect, love and once again learn from each other, as we experienced on Tuesday.

As people who have had lives interrupted by cancer, KL, I and many others have learned that hope does not mean that we will avoid or be able to ignore suffering. I believe that hope born of faith matures and is purified through difficulty. The pain and complications of cancer have their consolations, of course. Hope is much more than the surprise we sometimes experience when things turn out better than we expected. It does not depend on the results of our latest scans or blood test. For even when we get bad news, we can still live with a keen hope, the basis of which is the One who is stronger than life and suffering.

“Faith opens us up to God’s sustaining, healing presence,” Nouwen writes. “A person in difficulty can trust because of a belief that something else is possible. To trust is to allow for hope.”

This also means that to trust is not always to demand specifics of what will transpire. God wants us to know life, but what that actually means is open-ended. He wants me to experience healing, but how can I know precisely what healing looks like? If my cancer remains in remission but my life is slammed by a seizure and Addison’s Disease, do I remain any less in God’s grace? I believe not. I know that regardless of my physical health, he wants to bring me to a new place of faithfulness. If I try to figure it all out intellectually I risk losing a trusting spirit.

During this season of Lent, I have prayed that I relent in my constant desire to have all the answers. God is going to work out the details anyway that I’m tempted to seek after but ultimately cannot entirely grasp. I desire to see God even amid my weakness. I want to be open to him every day and in each moment, providing space for his spirit to perch in my soul.

No mountain climbing for now

The performance-enhancing potential of steroids in many sports is well known, but not so much mountaineering. The use of dexamethasone has apparently become rampant, however, corrupting the climbing game and putting at risk the lives of those who compensate pharmaceutically for what they lack in skill and training. What was once reserved as a way to treat severe mountain sickness has mushroomed into the drug of choice for climbers who want to make sure they peak out on extreme alpine ascents, reports Outside magazine. Dex has left in its wake a trail of neurological wreckage that disturbs but doesn’t surprise me.

It was a course of dexamethasone at sea level that snapped me out of my adrenal crisis a few weeks ago, so I have no complaint about the proper use of the drug. I know something about its magical power to resuscitate and stimulate. It brought me back from the dead. A month ago I powered down to 20-mg doses of prednisone and this week to 15 mg. Like many who take corticosteroids for chronic medical conditions, I’m tweaking my dosage to find what minimizes my exposure to their side-effects while managing the symptoms of my Addison’s disease. It appears it will be a trickier process than I expected.

The prednisone I take replaces the cortisol, the body’s “stress hormone,” that my adrenal glands no longer produce. I’ve learned the last few days that moving too quickly to a lower dose can induce the symptoms I previously experienced during my adrenal crisis, including muscle pain, sleeplessness (I was up at 4:30 this morning), fatigue and loss of appetite. I’m hoping I’ll perk back up with the slight adjustment I made in my dosage starting yesterday. I plan to finish a St. Patrick’s Day 5K on Sunday but to my great disappointment, I’ll likely be a walker and not a runner. I just don’t have the juice right now to move very quickly.

Fortunately, there appears to be no reason why I can’t resume my exercise regime now that I better understand how to manage my prednisone. Daily doses can be safely increased for a short time when I know my body is going to be stressed. Most people establish by trial and error when they need to top-up their meds. My aim will be to keep any extra dosage to a minimum while gradually building up fitness again. Running is great weight-bearing exercise, which compensates for the osteoporosis that steroids can cause. I’ll take a pass for now on the mountain climbing.

The Ogler turns 5

Come Easter (March 31), The Ogler will celebrate its fifth anniversary. That’s not bad for a cancer blog. If you’ve ever spent time cruising this category of blogs, you’ll know that most who blog either quickly lose interest in it and stop or they die. There’s an argument to be made that mine has gone on long enough, but I sense I haven't finished what needs to be said. Don’t delete my bookmark just yet. I intend to keep on going for as long as the Lord gives me strength and clarity of mind to do so.

I read in The New York Times yesterday that writer and filmmaker Nora Ephron wrote 100 blog posts, albeit none of them about the leukemia that finally killed her last summer at age 72. Counting this one, I’m up to 443 blog posts, which leaves Ephron's total in the dust. Impressive, eh? Of course, in the six years she had cancer, Ephron also wrote two books, two plays and directed a movie (“Julie and Julia”). While cancer may unleash what little literary talent some of us have, it can’t create something out of nothing. I’d love to try my hand at a screenplay some day, but only if Tom Hanks or Billy Crystal is willing to play The Ogler. Anyone care to be my agent?

This blog is about much more than just melanoma, but its audience is nonetheless pretty limited. Other than posting an occasional link on my facebook page, I do nothing to promote what I’ve written. A few other melanoma bloggers have found me and added me to their blogrolls, which I appreciate as it directs stray readers my way. Unfortunately, most melanoma blogs are not well written, but often do include useful information and encouragement for the newly diagnosed. The vast majority are written by younger women; very few by older guys like me.

I get anywhere from 80 to 200 pageviews/day, which doesn’t mean a lot to me. “Pageview” strikes me as a hopelessly vague metric, but seems to be a pretty standard unit for the web. I have a few (18) followers and other friends and family who check in regularly. Most traffic to The Ogler comes from people who first do random searches and stumble upon something I’ve written. I don’t understand search engine optimization very well, and frankly don’t care to jump down that rabbit hole. I’ve ignored Google analytics. I figure that over time, anyone who is meant to find The Ogler probably does.

What I find fascinating is the relative popularity of my blog posts. If you scroll down this page you’ll find on the left a list of the “top 10” most Popular Posts. Leading the parade with 1142 pageviews is “The world’s best-known melanoma survivor,” written about John McCain’s history of melanoma during his run for the Presidency in 2008. That’s weird, in my opinion. Of the top 5 posts, two each are on religious and medical topics. I tend to get high readership anytime I write about a famous personage: Ted Kennedy, Steve Jobs, Friedrich Nietzsche, Lance Armstrong, Grete Waitz. There’s no accounting for taste.

A good place to finish today is with a reference to the most popular post in the last month (258 pageviews), “Living in the Light of the Resurrection,” which is appropriate for this season of Lent. I don’t put much trust in numbers provided by Google, but I do have a sense of what “sells.” There’s definitely more substance in this post than anything I wrote about John McCain. As a rerun, I highly recommend it.

NED: How do you know?

Believing in the importance of scans in late-stage melanoma is almost religious dogma for some patients and their doctors. A spirited discussion at the Melanoma Research Foundation’s web site in recent days bears this out with opinion of whether follow-up scans are worthwhile or not falling on the side of “more is better.” I rarely participate on this bulletin board, but did on this occasion as I have a strong opinion on the topic, as you’ll see below.

Here’s the original post from the MRF site that got people talking, followed by an edited selection of responses:

Question: Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sept 2012 to remove a single infected  lymph node in my upper left arm…they took a few sentinel nodes as well and they were all clear. I am seeing a melanoma specialist who does not really believe in scans, but he did plan to do another PET scan at the one-year mark. So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?

Response: Unfortunately, you can have issues and have no external signs.  A year ago, I had just completed my annual physical and everything was great. Nothing in my lab work or the way I felt would have let me know that I was stage IV with at least 9 areas of melanoma - lungs, liver, bone, etc.  It was only by a miracle that a routine scan to check for artery plaque showed a "shadow" on my left lung that led to the diagnosis. This was 13 years after an original bout with melanoma behind my right ear and no lymph node involvement. I am coming up on my one-year anniversay taking Zelboraf and have been NED since last summer.

Response: I was stage I for 6 years, and felt great until one day my hand started developing a tremor.  Within 2 days I had lost the use of the right side of my body due to a tumor that hemorrhaged in my brain. Tumor was removed and now I have very few problems from that. PET scan and CAT scans found a few small lung tumors that didn't even show up on chest x-ray taken at the hospital 5 days before the CAT. So in my experience it just showed back up with no warning.  Important to keep up all followup care.

Response: I can only tell you our experience. My husband was Stage 3 and had completed his one year of interferon two months earlier. He was feeling GREAT when he went in for routine scans in July 2011. He had been playing basketball with our son and we were all vacationing on Cape Cod. We thought all would be good when we traveled to Boston for those scans, yet they revealed one lung tumor which was over 1 cm. So, with no symptoms whatsoever, Phil became Stage 4 and needed lung surgery. Not a great way to end our vacation. I think it's crazy that a doctor doesn't believe in scans, especially since melanoma is the most unpredictable of cancers.

The Ogler's response: After I completed interferon for stage III melanoma, I opted to minimize all care, including scans, and even though I soon moved up to stage IV (subq mets) experienced almost four years of blissful good health. That came to a crashing end last summer with a brain tumor that "came out of nowhere." A well timed brain MRI might have detected it before it bleed, but there's no guarantee of that. Here's my blog post ("haunting question") in which I contemplate the choice I made to live life and to let the chips fall where they might. I believe not having quarterly scans per my doctor's recommendation was still the right decision for me. (Here's my argument, in case you're interested).

Response: In reference to your question, my husband (who was stage IIIC) was feeling fine and went back to the surgeon for one last check up at the 6 month time.  He found a lesion in the scar area of the surgery that was done about 1 year before and it was pressing on the spine at the cervical area in the neck and was deemed inoperable.  Imagine our shock when we thought we were in the clear and going to be able to live life for awhile and he had been feeling just like his old self doing everything he enjoyed.  He was sent for scans and found they were also in the liver and lungs so now he would be Stage IV.  That was 2-1/2 years ago and he has been on Ipi (Yervoy) for 2 years now and is NED (no evidence of disease).

Response: My doctors are the same: no scans unless there is evidence. I told my local onc about feeling cruddy, headaches, weight loss, etc., on two occasions and he would just say, "That's interferon." When I saw my surgical onc they sent me for scans. Low and behond, there was a spot on my brain. I made it a year from my original diagnosis. I knew something was off but kept being told it was the medicine. Don't be scared to fight for your health.

Response: Peter "The Ogler" preferred to live his life without worrying about cancer. I know that some people adopt that attitude and most of them probably never encounter melanoma again. But as the father of  three young children, I think you need to be more responsible than that. Metastizing melanoma has no symptoms until it's too late-- like Peter's stroke that came from out of the blue. Or my brother's, for that matter.

Response: I haven't read all the replies, but there are definitely melanoma centers that do not do scans without symptoms. In studies, scans have not proven to increase survival. It's not just some piddly institutions who don't scan; there are more than a few. Like it or not, it's not an isolated instance.

Response: Maybe, just maybe, not doing scans for stage IIIc made sense when there were no effective treatments for state IV. What is the point of the expense and the radiation exposure and the "scanxiety" if there is nothing you can do to stop the spread anyway? The problem is that many oncologists still seem to have that attitude. I know that the senior radiation oncologist who treated my brother had that attitude. He essentially said, "Stage IV melanoma? Forget it. You're a goner." But things have changed in the field of melanoma in the last five years. If a scan reveals a single met in the lung or liver, SSR or surgery might be appropriate. BRAF, MEK, ipi, anti-PDI and other treatments are now possible for stage IV, so the sooner you find the metastases the better.

Response: I'm just playing devil's advocate here. I'm not pro or con when it comes to scans as I feel that is something that needs to worked out individually between patient and medical provider.

You mention new treatments. Yes, we have BRAF and Yervoy. But while some people do have durable responses to new treatments, mostly the life expectancy is increased by less than six months if you take these drugs. If you are a responder with minimal disease, it is likely you'd be a responder with more widespread disease. I know the arguments both ways from a general and personal point of view, but until there is a treatment that increases life expectancy in a large population by a significant amount, I don't see the scan issue changing. Scans are big business and big money makers, and some medical centers refuse to buy in to their supposed benefit.

Now if we had a treatment that increased durable response in 50% of the population and it was determined that "earlier is better," the argument would be different. Yes, there are some uninformed doctors who say "stage IV, you're a goner." But that doesn't mean there aren't some very well informed doctors who feel that scans do not improve outcome.

Response: My melanoma oncologist and I had a long discussion about scans. She says there is no evidence to support that scans actually increase lifespans. Those who have scans showing recurrence and who undergo heroic surgeries and treatments do not statistically live longer as a group than those not receiving scans in the first place. From what I understand the statistical variance with melanoma is quite large. It is more "random" than other cancers.

Response: In my case, we are now doing brain MRI and body CT bimonthly. I'm not sure I care if the scans increase my chances of long term survival.....I just want to know where I stand. I don't like the idea of giving melanoma a six month to twelve month head start in this race.....it already gets enough of an advantage. I'm a pretty positive person, determined to fight this. But I like having a "scorecard" to know how it's going.

Response: Interesting timing on this topic. I just went for scans and have been NED for 22 months. My onc considers this two years and says that scans at this point would be more harmful than good. He is a melanoma specialist and is well known and respected in Chicago.

Now here's the kicker...I never had a primary that my dermatologist was concerned about. Yes, I had 1 or 2 things removed in the past but they came back clear. During a visit I asked him about a tiny lump on my face. He said it was probably a sebaceous cyst.....well, it was melanoma (this also happened to The Ogler, as reported here). Once I found a specialist he went through old path slides to rule out previous mole removals....all clear. I had the PET/CT...all clear. My oncologist felt this was a primary dermal melanoma which some of the fine people on this board educated me on. It's rare but he said it is not out of the realm and given that this lump in my cheek was there for a year; he felt it was likely.

Anyway, I went on to have wide excision of cheek as margins from derm removing "cyst" weren't clear and had SLNB under right jaw bone. Finally, margins and SLNB clear and no treatment. Tumor was pea sized...width was 5.7mm and depth would be considered stage III but he didn't stage me and said it was irrelevant as I'm NED now and had no lymph node involvement. I asked about blood stream and given that the lump in my cheek was there for close to 18 months he felt it was highly unlikely or would be first case in his close to 25 years of dealing with melanoma.

Response: My friend is stage iv and is as fit as a fiddle. She's now outlived her prognosis. She is training for a 10k and 5k race at the moment. I think though, from what I have found out about this disease, that I would want her to be scanned often even at stage 3. You can be in front of the 8 ball at stage 4 nowadays. I have read about many people living with this disease for many years at stage iv and now I feel that great things are coming. Don't just go on what one bloke (doctor or not) says. What do you think/want? It's a balance between knowing what's going on and living your life.

Prayer and the immune system

One last thought about the healing power of prayer. There is medical evidence (not proof) to support the contention that people who pray are less likely to get sick, more likely to recover from surgery and illness, and better able to cope mentally and emotionally when they are sick. There are also those who believe this is bunk. Most of us who pray are predisposed to believe in its benefits. Based on what I’ve written in my previous post, you know where I stand.

For me, the most persuasive evidence for prayer’s healing power rests in its ability to maintain and improve the function of the immune system. Chemical connections have been identified between molecules produced by the central nervous system and cells of the immune system. This mind-body-soul connection can be influenced by many factors, including the peace, hope and confidence that prayer can impart to those of us who partake. As I wrote on this blog several years ago, I’m pneumapsychosomatic. Are you?

Regardless of one’s faith, it’s hard to deny the placebo effect that can nourish the function of the immune system. I believe there’s more to it than that, of course. According to Dr. Harold Koenig, the director of the Center for the Study of Religion/Spirituality at Duke University, when prayer uplifts or calms the spirit of people, fewer stress-induced hormones are produced by the adrenal glands. I guess I have Addison’s Disease to thank in part for lowering my stress level since my adrenals are now officially off-line. “The peace that passeth understanding” (Philippians 4:7) also figures in. As I wrote previously, what we’re dealing with here is a great mystery.

Many studies have shown that patients with serious diseases who are prayed for by others actually heal better and faster than those who are not prayed for by others. Praying for the healing of others is a form of alternative medicine known as “distance healing.” A laying on of hands, including that of healthcare professionals, is never wrong to do with someone who is sick. I wish my doctors and nurses did more and ordered fewer tests and scans. Human touch alone can be a powerful force of healing and doesn’t require a medical degree to practice it. But when you can't be there to pray with someone face to face, interceding for them in prayer from a distance can still impart health benefits.

As with other forms of alternative medicine, meditation and prayer can help us empower our minds with energy, aid in the body’s recovery, improve quality of life, and improve outcomes. They can save our lives. Dr. Larry Dossey, the author of “Prayer is good medicine,” recommends, “…don’t wait for the results of more double-blind studies to pray. We can stand to have more extraneous prayer in this world of ours.” The next time you pray for someone with cancer, make sure to include the building up of their immune system among your petitions. 

Answer to prayer

I’ve hesitated to write about prayer and how it figures into my health, my survival and my overall spiritual well-being. It’s easy to jump to facile conclusions or trite generalities about prayer. I haven’t wanted to bring discredit to a fundamental practice of the Christian faith by writing glibly about it. But this has been a blessed season of prayer for me, so will do my best to unpack how I’ve seen it make a dramatic difference in my life.

The bottom line is my conviction that I wouldn’t be alive today if not for the prayers and the petitions of many good people—both known and unknown to me—specific to my cancer. As good as much of my medical care has been, it’s not the sole reason I’m still around. I have asked God to preserve my life, as I know others have as well, and for reasons that remain a mystery, he has seen fit to do so. As expressed in the vernacular, my prayers have been answered. Against the odds, I am alive today. I have been graced with the gift of time.

In a world that constantly calls religious faith into question, prayer becomes a subversive act. Maybe that’s why I love it so much. Specific to my situation, it challenges the claims of modern medicine and its comprehensive understanding of how the body works, which leaves little room for the supernatural. I’ve learned to see prayer not as my way of establishing God’s presence in my life, but as my way of responding to God’s presence that is a fact whether or not I can detect it. He is present at all times. When prayer becomes difficult or impossible, as it has been at times this winter, I am still the recipient of his blessings. He prays through me when I can’t muster the energy.

For most of us, much of the time, prayer brings no certain confirmation that we have been heard. We pray in faith that our words somehow cross a bridge between visible and invisible worlds, penetrating a reality of which we have no proof. We enter God’s milieu, the realm of spirit.

I will never understand this side of heaven why prayers offered on my behalf have been mostly answered while those of, say, a 12-year-old with bone cancer have not been, and he or she dies a sudden, inexplicable death. We hear about earnest believers whose prayers go unanswered all the time. The great Christian thinker C.S. Lewis has written about this haunting suspicion we feel at times that prayer is absurd and can have no objective results. Some of us might go so far as to agree with George Buttrick’s fear that prayer is nothing more than a spasm of words lost in a cosmic indifference. Lewis counters in “Miracles” that the impossibility of empirical proof that prayer “works” is a spiritual necessity.

“A man who knew empirically that an event had been caused by his prayers would feel like a magician. His head would turn and his heart would be corrupted. The Christian is not to ask whether this or that event happened because of a prayer. He is rather to believe that all events without exception are answers to prayer in the sense that whether they are grantings or refusals the prayers of all concerned and their needs have all been taken into account. All prayers are heard though not all prayers are granted.”

Karl Barth, the 20^th century theologian who pounded home the theme of God’s sovereignty, nevertheless saw no contradiction in a God who chooses to be affected by prayers. “He is not deaf, he listens; more than that, he acts. He does not act in the same way whether we pray or not. Prayer exerts an influence upon God’s action.”

I trust that he does, which is why I have often sought out the prayers of people I know believe in its power. The gift of prayer is not distributed equally among believers. My Hispanic friends have a particular aptitude for prayer and enter into it naturally and fervently; my Anglo friends not so much. I also know people who are not Christian who I believe communicate with God, as they understand him to be and who gladly receives their thoughts. Thomas Merton, the Trappist monk and mystic of the last century, has written that prayer is an expression of who we are. “We are a living incompleteness. We are a gap, an emptiness that calls for fulfillment.” Prayer helps to fill us up.

All of this leaves me to struggle with the dilemma of prayer and physical healing. A stream of books and articles have been written about physical healings that hold out extravagant hope. If you’re an ardent consumer of news as I am, hardly a week goes by when you don’t watch or read a story about someone who “beats” cancer or some other dread disease. Prayer sometimes figures into these stories, but not typically. At the other extreme, pastors and counselors can tell you endless stories of believers whose prayers for healing go unanswered. These are the narratives that you most definitely will not see on the evening news or in the pages of The New York Times. Hope sells; despair and despondency not so much.

Like many people who face serious illness, I have learned to adapt my prayers to natural laws. I don’t believe this is unfaithful, but in fact sustains faith in light of how God has created the world. Philip Yancey, who has written a marvelous book I recommend titled “Prayer: Does it Make Any Difference?,” has written that “The greater the apparent constancy in nature the less the power of petitionary prayer; we cannot change the tides by praying. The great the variability and flexibility, the most instant our prayers: we shall continue to pray about the weather and about physical health.”

Jesus did not come to earth to reverse the laws of nature. In terms of physical health, you could say that the power of prayer has limits. No prayer will reverse the aging process, banish death or eliminate the need for basic nourishment. If you abuse your body long enough, you will die. God has set certain rules in motion for human life, but within those rules there is great potential for physical healing.

There are also the occasional miraculous exceptions; i.e. people with cancer who will experience spontaneous remissions apparently unrelated to treatment. We can pray for that if we wish, although I haven’t. My miracle is just knowing that my T-cells have been fired up by treatment and by the innate ability of my immune system and are actively, and I pray successfully, killing stray melanoma cells in my body. I believe that knowing something about the cellular biology of melanoma makes my prayers for healing potentially more successful. Having a scientific world view can also be considered a gift from God.

When I fall sick or learn of the physical suffering of a friend or family member, I bring that request to God, who the Bible describes as the Father of compassion and the source of all comfort. Yancey writes: “Sickness, not health, is the abnormality that Jesus came to expose. While not solving all the problems on earth, Jesus’ miracles gave a clear sign of how the world should be, and someday will be. His acts of healing restored to specific individuals what had been spoiled on the planet as a whole.”

The Bible gives plenty of examples of prayers answered and unanswered, of illnesses healed and unhealed. I have experienced both—cancer persists in my body, but I have also been healed repeatedly of its physical manifestations. My prayers for healing have—from adrenal gland insufficiency, for example—been answered, but I have not been “cured” of melanoma. I am at peace with that knowledge because I know that there will be no cancer or suffering of any kind some day when I’m with God in heaven. Until then, I will continue to speak with God through prayer confident that he hears me and that it makes a difference in how he chooses to dispense with the days he has granted me in this world.

JFK's adrenals

If I can live as well with Addison’s disease as John F. Kennedy did, then I have no worries. I was told by my endocrinologist last week that the adrenal insufficiency crisis that I experienced a month ago probably knocked out my adrenal glands for good, meaning I’ll remain on steroid replacement for the rest of my life. I was under the impression that I’d gradually taper off steroids, but that now appears unlikely. I need them to live.

The prednisone I’m on aims to replicate the necessary amounts of the missing hormones—cortisol and aldosterone—that my adrenals are no longer producing. It will take some focused attention to maintain the right dosage, but like most people with Addison’s, the disease shouldn’t interfere drastically with my lifestyle. Fatigue and dizziness are the most common concerns of so-called Addisonians. Steroid meds, on the other hand, tend to fire me up, so perhaps I’ll strike some sort of reasonable balance in terms of my energy level.

I appear to have ipi to thank for this loss of adrenal function. The silver lining is that this represents my body's robust immune response to the extra antibodies loosed by my ipi infusions; it hints that I’m a responder to the high-risk immunotherapy regimen I signed up for last fall. If that proves true, it makes the penalty of being diagnosed with Addison’s easier to swallow. Until steroid meds became available in the 1950s, AD inevitably resulted in death over a period of time.

JFK’s Addison’s disease, which came to light only after his election in 1960, was most likely caused by a rare autoimmune disease called APS2. In contrast to the full medical disclosure that’s typical today, Kennedy’s family and advisors were able to keep his medical history virtually secret. Nobody knew about his AD until years later. JFK, at 43 the youngest president ever elected, was portrayed as healthy and vibrant. In reality, he suffered various health issues that were controlled by a daily regimen of steroids and other drugs. I’m getting to know what that’s all about.

Obama's brain

After President Obama’s recent announcement of a plan to invigorate the study of neuroscience with what could amount to a $3 billion investment, a reasonable taxpayer might ask: Why brain science? Why now?

My response: Why not? How better invest in medical science? The federal government spends about $3 billion a year in cancer research through the National Cancer Institute for what’s turned out to be a paltry return in terms of improvement in patient survival. I’m all for diverting some of that cash over time to deciphering the neural code and better understanding the language of the brain. If, as taxpayers, we want to see our research money spent most wisely for the benefit of all, then brain science might be just the ticket.

Backing Obama’s plan is certainly in my selfish interests. I wish my doctors had better understood how my melanoma was able to spread from skin to the brain, where it metastasized, grew and ultimately bled last summer, and why five months later I should have a major seizure at the site where the tumor was removed. Should these have come as such great surprises? So there’s a personal mystery to crack here, as these assaults on my brain have affected my thoughts, memories, and desires—essentially, the entirety of my neural landscape.

Our brains, and the minds they contain, largely make us the people we are. Just imagine: The little spaces between our brain cells—the synapses—are the channels through which we think, act, imagine, feel and remember. These synapses encode the essence of personality, enabling each of us to function as a distinctive, integrated individual from moment to moment. And this is all happening right there between our eyes. There’s an immediacy and tangibility to our brains that’s deeply spiritual. When they go wrong, as with Alzheimer’s and Parkinson’s, we cease to be who we were.

It was my fear of losing this integration of thought and personality when planning my radiotherapy regimen last fall that prompted me to fight so vehemently for my hippocampus (see this post). It was just intuitively obvious to me that you don’t mess with that part of the brain where memories are literally formed. I wished then there was more science to back up what I sensed to be true. It should not have been so complicated to convince my oncologists that carpet bombing the cancer in my brain was not the highest purpose of their medical talent. Doing their best to preserve who I am for as long as that’s possible was also their obligation.

We shouldn’t remain such aliens to the brain, this complicated cipher of 100 billion electrically active cells. I’ve tried mostly unsuccessfully in recent days to grasp what might have caused my seizure and how I might avoid a second one. The neurologist who is directing my seizure meds isn’t much help. The complexity of the brain bankrupts our language; observing the brain with our current technologies, we mostly detect an enigmatic uproar. There is nothing I can learn from my doctor that helps much in my decision-making.

I am, at least, trusting in her judgment that I should remain on the drug I’ve been taking to control seizures. Called Keppra, it’s what most people who have had a grand mal seizure are prescribed. It adds to my fatigue and seems to cause a little vertigo, but I otherwise tolerate it well. It’s possible I might stay on it at my current dose forever. As for driving, I’ll adhere to Dr. Stevens’ advice and restrict it to short trips around town until April 10—three months after my seizure. Beyond that, there’s a small chance my brain could seize up again, but then the earth could also be struck by an asteroid at any time. I’ll take my chances.

While we have improved our ability to diagnose brain problems, we have yet to understand how to remedy them. But deciphering the neural code is not only about physical health. Consider the implications of Obama’s brain project for societal health.

The New York Times broke the story last week, and described the project’s potential: “A deeper understanding of mental illness will improve early detection, resources and rehabilitation, potentially helping us find a way to stop using our prisons as a de facto mental health care system. Similarly, we can leverage brain science for a more cost-effective approach to drug crime. We cannot win the war on drugs simply by attacking supply; we must focus on demand. And that requires decoding the circuitry and pharmacology in the brain of the addict.”

The project is expected to be part of the president’s budget proposal next month. What’s being called the Brain Activity Map hits close to home for anyone who has experienced any form of brain disease or injury, which includes millions of us. I believe the pay back on this project, like the Human Genome Project in the 1990s, could be lavish and that it should be funded. We need to unlock the brain and learn more of its secrets.