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.