What I Learned From My 366 Photo Project

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What I Learned From My 366 Project

Dan Riordan

November 1, 2016

The photos from my 366 project can be viewed on Facebook, "Early Morning 2015-2016" https://www.facebook.com/media/set/?set=a.10101079650804782.1073741857.185105701&type=1&l=d2f0949e9c

In October 2015 I was diagnosed as having one year to live. I decided to have a project and settled on one that had long resonated with me—a 366 Project. I would take and post one photo a day for 366 days (2016 is a leap year). Actually I took between 3 and 15 photos a day and Mary, my wife, chose one for me to post. I selected Facebook as my posting site. I was comfortable with the process of posting there, though it is possible that Instagram would have worked as well. Regardless, I am happy with the decision. 

I set some parameters for myself. I would take the photos only on my iPhone 6, take them on the morning of the day I would post them, and take only photos of things I could see in or from my yard or along one of the three routes I could take each morning to buy the morning newspaper. If I were not in Menomonie, I would do the best I could with whatever was at hand in the morning. Most of the photos were taken within two miles of my house. The others were taken in Minneapolis, Waukesha, Cincinnati, Austin, Seattle, Port Angeles, Victoria, West Glacier and St. Mary, Montana. I tried to mix up the images so that I presented a range of topics, to avoid using the same locale over and over.  Some, however, like one of the hilltops along Rudiger Road just outside Menomonie, became favorites. Those I tried to present in various seasons and lighting.

The easiest place was our yard. We live on a high hill looking east over Lake Menomin. Sunrise pictures quickly became a staple for me. In the summer I often got up at 5, took the photo and went back to bed. In winter the sun rises about 8 making the dawn much easier to capture. Also we have a large native perennial garden with many species. Those became an interesting source of images in the summer, though I found pictures of blossoms more difficult to present than I had expected—I wanted more than a guide book shot of the plant.

I learned many things during the year, both about myself and photography. I think that the most substantial change was the way I “look.” I notice things differently. I notice form, lines, composition, story, compelling images. I am in the world differently than I was a year ago. A good way to say it is that I participate more. I see trees outlined against the sky. I see patterns, in clouds, in fields, even in flocks of birds. I don’t just see trees but notice their shape even the way the ends of branches interact with the sky; I don’t just see clouds but notice the patterns of light and dark, thick and thin.  

My composition clearly got better. I developed a finer awareness of leading lines, blocks of color and blocks of form. I learned to position those in the image so that they worked together to make a unified whole. As I got better at this aspect of my work the images became more meditative or compelling.

Coupled with expanded awareness, I found a willingness to stop, even go back, to select an image. When I began, I just passed those scenes, thinking, “Too bad I missed it. Maybe next week.”  The other day I backed the car up several hundred yards to get back to the correct position to take the photo with the effect I wanted.

I learned to accept the challenge. A year has a lot of cloudy, rainy days. It would be easy to just say I’ll post something from yesterday or skip the post all together, but I made myself seek those images and I found them. After a while I enjoyed the challenge of those days. I found puddles, drops running down windows, wet leaves and rocks all ready to be photographed.

I realized the value of the people who liked and commented on my photos. I could tell by likes and comments what type of images played best. I tried to repeat some of the things people liked: sunrises, lonely roads, people doing morning things (though I didn’t have all that many people because most of my photos were landscapes), flowers in dance step with one another, repetition in architecture. As the year progressed an interesting thing happened— I started to take photos with my audience in mind. They became something I offered to the audience. The photos were for them. No longer were the photos something to check off on my day’s list of duties. As this sense developed another change occurred. The audience became co-creators. As I took the photos I felt the audience looking at the scene and the camera screen. They were watching to see what I was doing. We took the photos together.

As my sense of creating for and with an audience changed, so did my sense of what I was doing with the photos. I started to render the mornings. The goal of the shots became to create a sense of the meaning of early morning. How could I catch that something present only in the morning, at sunrise, in the garden, on the road, over the hills, in the fields, in the clouds? I had moved from morning snapshots to, well, morning poems. I found my self driving around choosing a route because I figured that I would find the image--the poem--for this morning on that route. Often I passed up a scene because I could sense that it was wrong. It couldn’t present the core, she soul of the morning. I remembered those scenes, though, so that when the light was right, I could return to the scene to find it was the right one for the day.

My sense of connection changed. I am not really sure how to discuss this phenomenon. Connection means various things--aware of, joined to, emotionally moved by, part of. I have not worked out the complexities of this new realization. It implies a spiritual dimension that I discuss below. I do know that I feel closer to my locale and the things in it. I have had to find new subjects, not just repeat taking the same shots. I often thought that I had recently taken enough of the lake or the sunrise or the flowers and turned to other subjects, which I had to find. I had to develop a memory for what was out there on all the different routes. I learned the nooks and crannies of the routes, where I could safely stop the car, where the coots flocked on the water, where the perennials put forth new blossoms. Through the searching they became my hills, my roads, my lake, my geese, my blossoms.

As the project came to an end, I began to work with meditation. I took a course here in town led by friends and I have done some reading about meditation and about the relationship of photography to meditation. Meditation calls for awareness and a temporary release from external concerns to contact with inner worlds. As I experience meditation I am regularly reminded of the practice of photography. I can only take photos if I am aware, in the moment. I focus on the intricacies of the item, its internal lines, forms, tensions. Like breath I draw them in, snap the shutter and exhale them out. I find somehow the statement the item makes, the connection that it makes with me. This experience reminds me of walking meditation but I am not clear on the way this works. And while I can see how taking photos could be a meditative practice, I often take photos not thinking about how they are meditative. Viewers sometimes commented that the photos are meditative. Some even called them a manifestation of spirit or God. I intend to explore the possibility that these photos have a spiritual dimension, another power.

I feel satisfied. I have accomplished a goal, and the process has clearly given people delight. I have been asked to put all these images into a book. I would not put all of them in unless I could find a cheap way to print the book, but I might create a book that contained my selection of the best. I will have an exhibit this winter at a local bar/restaurant with another artist. She has chosen a number of my photos to render in paintings and I will display the originals. Our work will hang side by side or at least in the same room. I am quite honored by this exhibit because my partner is the former chair of the UW-Stout Art Department and she approached me to do this with her.

This week I met my oncologist who told me that I have already lived longer than he thought I would. This project helped propel me through a difficult year, kept me focused on something other than that depressing prognosis. I don’t know how long I have to live and I don’t know what my next photo project will be, but that project will help me fill my remaining time with joy and creativity.

A look back at Autumn

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November 15, 2016

Since my last post much has happened. My PSA has done a roller-coaster set of readings. Down to about 30 and most recently (Nov 1) up to 37.  Part of the decline to 30 from earlier 45 was that I got chemo and a Lupron shot at the same time. Lupron helped some, which means that some of the cancer in me is still susceptible to hormone therapy but obviously quite a bit is not.

The round of chemo has kept my PSA down so I have continued past the originally scheduled 6 sessions. I now have had 8 and will have the ninth on November 28. It is not clear that there will be a 10th but I expect that there will be.

This round has been hard on my stomach and lower GI. I have had stomach discomfort, diarrhea, and some constipation. These side effects are draining. They take the oomph out of me.  Usually they occur about days 7-12 of the cycle. I work hard to maintain some exercise, trying to get in 2 miles walking a number of times a week. I am skipping it today in order to write this.

I found myself buoyed up when the PSA dropped from 45 to 30. I know not to count on that drop as an indication that further drops are coming, but it was a relief. I had spent much of the autumn working on end of life things and that task is also draining. But we have most of that set now, my end of life celebration, our money, the house, clarity with the kids and immediate family, cars, house repairs, yard changes both completed and ordered from the landscaper in case I am not here in the spring. I have felt less down these past few weeks and that is a fun feeling, sort of like the feeling I used to have about how good it felt not to have a migraine.

During these weeks I get rock climbing when I can, no longer once a week but still every other week.  And as I have said in these pages many times, I can’t let this condition turn me to, well, a pity party. We have a grand Thanksgiving weekend coming up, visits from old friends, from family and a meal on Thursday at one of Minneapolis’ finest restaurants, Mannys, in has now become a tradition. I keep up with my German, though right now it feels like I am at one of those plateaus that I would like to rise up from, but that is not happening quickly. Our Christmas plan is to spend December 23-30 with all the family in a villa in South Padre Island. What a kick that will be. We have never done that before at Christmas. I am really looking forward to that. 

The work with spirituality has also plateaued. I have read some fine books and have a new perception of religion in general though I am still working on the meaning not just of spirituality but of living spiritually. One of the touchstones of such living is connection, which I am finding hard to define and realize. It is easy to define connection but what does it mean to be connected to others and other things? The answers of course can be worked out rationally and easily but the emotional (or realized) meaning of those answers is much harder for me to achieve. I have enjoyed meditation which I began about 2 months ago. In the short term it is pretty amazing in its ability to effect calmness. I like that. But I am not sure of the long term goal of meditation. Is it supposed to lead to the traditional mystical experience? To the dissolution of the ego? Are there plateaus in the practice? I am certainly a beginner and I have no answers to these questions.

Oh, the photography. What a joy. I have completed my 366 project. I certainly received many supportive comments and I have posted all 381 photos in an album on Facebook. I have also written an essay about what I learned from the project and probably will post it on this site in the near future. I loved the awareness and sense of harmony with the seasons that the project caused. Preparations continue for the show I will have with a local painter who is rendering a number of my photos. I think that show will open in the mid winter. My photo group is a great source of satisfaction. I love the discussions of each other’s photos. I am amazed and delighted with what we see in each other’s work. Our work is available on Flickr as Red Cedar Photographers if you would like to look.

Photography is a kind of meditative practice. The practitioner must be aware of and focused on the image, which is akin to breath. I have a ways to go with this thread of thought, but I enjoy it and will get there.

Enough for now. Thank you for reading.

     

My photo project--one way I spend my time and energy

This blog has often had passages about engaging death. Frankly it gets a bit overwhelming at times. There is more to daily life than worries about an end I know is coming within a year. So I wrote the following. I hope you find it a respite from some of the more difficult topics in this blog.

Since October 24, 2015, I have been engaged in a photographic “366” project.  I post a photograph on Facebook every day and will do so for a year; it is 366 because I am doing this through a leap year. The series is called Early Morning. I try to take the photos before 9 a.m. I decided to do the project because it sounded like fun and a challenge. I set some rules. Photos can be taken of anything I can see from or in my yard or along one of three routes I take to and from purchasing the paper every morning. Or, if I am not home, then photos can be of anything I see near where I have spent the night. The photos must be taken on my iPhone 6.

Almost all the photos have been taken in Menomonie or surroundings (one of the routes is a circuitous one through the countryside). However, some illustrate spots near our apartment in Minneapolis or in places we have traveled to, like Waukesha, Wisconsin, or Cincinnati, or Austin, Texas.

On a few mornings I take only one photo, but most mornings I take 5-10. Then I give them all to Mary who chooses one which I place on my Facebook site. The response has been satisfying. Usually about 10-20 of my Facebook friends ‘like’ the image, sometimes less and sometimes more. Often friends will comment on the photos, perhaps 6 or so comments. These comments range from “wow” and “nice” to “my favorite so far” or “top 10” to comments about spiritual value and worth. Recently someone called them “optimistic.” I love those deeper interpretive comments, but the truth is that I don’t think ‘spiritual’ or ‘optimistic’ when I take the photo. I take what ‘grabs’ me.

Often when I run into someone at a store or other public venue I will receive a nice compliment about the series. It is clear that a lot of people watch for it. I have been asked several times whether I will publish a book of them—what a great compliment. And, speaking of compliments, an area artist, someone in Stout’s renowned art department has invited me to co-exhibit with her. She will paint versions of some of my photos and we will display them side-by-side. I am just amazed by the request and delighted to take part in the show.  When it is finally up, later this year, I will add a link to it from this blog.

The photos are mostly nature scenes. By far the most popular ones are sunrises. But I try to mix up the images. I have flowers, buildings, fields, country roads, rainy windows, ice on windows. We have a nice native plants garden so I use all of those flowers a lot in the summer.  If I am lucky, I am up for the summer dawns and will get the sunrise, though it is much easier to get a winter sunrise at 7:30 than a summer one at 5:15. Our bedroom faces east and has a large window. Often the sunrise wakes me and I run downstairs to take a photo, then return to bed for another hour or more.

The challenge of the project engages me. I like looking for the images and I like trying to mix the images up, so that I am not just doing flowers or sunrises all the time. Over the months my eye has sharpened considerably. I see the images as I drive—and I am willing to stop and take the shot. I can tell that my recent images are better composed than those I began with in the fall.

Dealing the Void and Finding Joy

I just found this piece that I wrote some time ago.  I find it accurate to what I experience, though I am now working my way into an understanding of spirituality, as I have explained in previous posts.

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The void and joy

June 14, 2015

I know the void. It is behind everything. I became aware of it when I learned I had a serious cancer that will probably kill me. Here is how the void works: It makes everything pointless. Suddenly questions like Why should I do that? or Why do I care? or Why should I make that plan? or buy that? or work on that project? all take on a different meaning. In my pre-cancer life those things were impinged upon by other cares and needs. The question was answered by considering the impact of a ‘void’ question--whatever it is--against that other thing that I had to get done or wanted to get done in my life. Suddenly with this new reality the projects can seem like whistling in the graveyard. What difference does anything make? If I have a project, say my genealogy, am I just killing time until I die? Is that life? Basically, Who cares?  The void exerts enormous pressure. It impinges on everything. It is present in all decisions, all moments. It is a huge blanket, fog, dullness. The response to it is to sleep. On bad days the void makes itself present, very present. Or perhaps it is that on those days, whatever protection I have against it is thinner. weaker, less able to stand up for itself

It seems to me that for many people the answer to the void is God.  God is as large as the void. God offers the hope of life after. God allows you to avoid the void because you have something as big on your side.

But I am not really able to subscribe to that possibility. Where can I turn?  My answer for now is Joy. I enjoy a lot of things. Photography, rock climbing, eating, and on and on with a list of all the things I am involved with in a day.  The void would have me think ‘How foolish. Who cares? This is not significant.’  The presence of cancer has taught me that I can't accept that. I have to find a grasp on joy. I have to see joy as not some momentary incident (my team wins a baseball game, I see a grand child, I stop at a particularly fine building, I solve a genealogy research issue, I climb a difficult route). Joy or it, close relative engagement has to be permanent.

Where does Joy come from? Right now my only answers are my history and my present. For instance I have a history of rock climbing. When I get better at it the presence of my history of not being good at it feeds my joy. The same for the meal I eat that Mary cooked. But what about time wasters, like digital solitaire? If the void could dictate I would play meaningless solitaire until I die.  With joy solitaire is a connection between events.

There is also joy in the present. That joy has to come from acceptance. Since I have begun these thoughts, I have realized I have a different view of people I meet. I often found it easy to dismiss people--for all kinds of reasons. I won’t detail them. But even total strangers.  It is easy to poke fun.  Now I find that poking fun is ridiculous. Each of them dwells with the

Void. They have to find a way to deal with it.  Dealing with it requires attention to both the present and history. We have to find strength to maintain that attention, that engagement.

I wish I could tell you where that strength is.  I can only say that you have to find it. I found mine when the doctor told me I had cancer, bad cancer, and I realized that I was not afraid. That is my basis. From that I can look at meaninglessness and go forward. It is actually a bit odd, because I have been frightened by other things in my life, like the time I thought I would lose my sight or the various times when I worried that I could lose my job.

I am reminded as I write that when I taught literature, in particular lyric poetry, I told students that for any poem they could diss it or explore it. To diss is the voice of the Void.  It is easy to not realize that if you don't have the sense not just that you will die but that you will die in the foreseeable future.  Without that sense of death the Void is just another abstraction. It is only when it becomes the kind of reality that it has for me that I have found that I have to consider it and find a way to keep it from controlling me, or at least derailing me.  I suppose I am controlled by it.  The Hmong talk about the sickness having you rather than you having a sickness and that seems true to me now, though it did not when I first heard the concept.  In that way, yes, cancer has me. But I am not rendered helpless by that fact.  My friend Joe said when he turned one of the milestone birthdays, perhaps 75, ‘What am I supposed to do? Wait around to die?’ And the answer is no. However, the path forward from the point at which that question enters your life is not a flat paved trail or sidewalk.  It is a rocky mountain trail.  It is hard to negotiate, but if I look up it is also the place where I can see, now, beautiful sights, mountain ranges, glacial lakes.  It is the joy that happens when you explore a poem or a painting and suddenly it pays back with insight.

From a letter to a friend on spiritual reading

Thanks for the long email and the discussion of spirituality. More on that in a moment. I have been so long to write because the last chemo went after my stomach and lower GI. First diarrhea, then constipation, all accompanied by stomach discomfort (as in rice and apple sauce sound about the best for this meal) and weak legs. I was reminded of the ditty in Steve Martin’s Parenthood where the kid sings When you’re sliding into home and your pants begin to foam—diarrhea.

Tomorrow it is the oncologist and then chemo again on Wednesday. How often do you meet your doctor(s)? Today I had a blood test to determine my PSA level. Down from last time is good, up is really bad. I find it quite stressful to wait around to hear the number. It often reminds me of the time I opened the letter to tell me whether I had passed my qualifying PhD exam.

To offset the side effects I have begun acupuncture once a week.  I enjoy the sessions but I am still not sure that the procedure is working. One nice thing is that after the needles are inserted, I am left alone in a darkened room with woo-woo (as I call it) music, usually something that sounds like South American flutes. I find it easy to drift off into a quiet revery.

Well, on to spirituality. I have a way to go I can see. I read some of Honest to God by John A.T. Robinson, some of the Varieties of Religious Experience by William James, the Seven Storey Mountain by Thomas Merton and the material you sent me including the last half of Life After Death and the excerpts from the Gita that you sent me. Merton’s story is an interesting one of the long experience of conversion and the difficulty of finding something to commit to, but, lord, it is old school Catholicism. All the world is evil and only the God experience is worthwhile.  I am not there. (Merton though seems very close to your view of the world as hell, the abode of senseless suffering.)

What I see in all the others is the sense of two worlds (or orders of being?) that are actually one, or can finally, with work in most cases, be perceived as one. Well I am not there yet either. I can understand the perception, the sense of meeting something other, of entering a timeless, noetic world, but I guess I have no faith. If faith is the evidence of things unseen, and if on the basis of that evidence, you commit, well, fine. But I have a ways to go, a long ways.

As I read I became more aware that spirituality can be active or passive. Passive is the openness to the experience of awe and wonder (as a good friend put it). So it is the sense that beauty, say the pattern of clouds yesterday, that engages not just an “oh pretty” or even a metaphor of some kind, but just that sense of wonder. Active is to seek the spiritual experience. That seeking appears to run the gamut from saying prayers or having some kind of regular thought/action about the spiritual world, to doing the kind of extreme actions designed by saints and recorded in various Ways of the Spirit rules.  So I got that far. But all the intellectualization of the issue seems to me to be the wrong path. I am still looking for the something inside me that will make itself known and that I can feel comfortable with, or at least willing to explore more. I have to reflect on the Upanishad excerpt you sent me.

Thanks for listening to that. I know you have worked on this part of your life for years. I am so impressed by that.

You mentioned in an earlier letter or email that you have started to write about your life, a memoir or an autobiography. I hope you are continuing with that project. You have so much to tell the world.

Progress report after 3 sessions of chemo

Hi, my PSA has gone down to 30 from 47. Nice. And thank you for all the good thoughts and prayers sent my way. As usual it is a relief to have the number go down, and a disappointment not to have it down to 2 or so. But so it goes.

The doctor is satisfied with my progress. I will have my 4th chemo tomorrow and then two more, one late in August and another near the end of September. It is possible that I will have more treatments but that decision will be made in September. The doctor is also interested (I think that is the best term) in my entering a clinical trial for “ippy” (Ipilimumab). His view is that I should wait until the chemo fails, as it inevitably will. In other words chemo will only reduce my PSA so far and after that it is classified as failed. This sequence happened with my last program of chemo where the PSA reduced to 14 then went no farther. It is a harsh term, but the term is failed. Anyway, after that chemo event, he feels that would be the time to enter the clinical trial. Currently that sequence is not clear and I urge you not to worry about it. I am simply trying to report to you what I heard today.

This last chemo session three weeks ago left me with more stomach lower GI issues for longer. Ugh. Or Puha. I will use some different strategies to combat those side effects after tomorrow. Among other things I will, at the Dr’s suggestion, stop taking aspirin and niacin every day. Hopefully this change will help with the stomach issues. We’ll see. The other side effect is tiredness. I am more tired this time and so, to my annoyance, I am not working out or climbing. The best I do is get in as many two-mile walks as I can.

So enough of the doctor report. We leave for West Glacier, Montana, next week to attend the wedding of my brother-in-law Steve’s son’s Jackson to Claire. I can’t wait. I get to visit with many of the relatives and also spend time in our beloved mountains. We met in Glacier Park in 1964 and have returned to hike many times over the years. The kids and grandkids want to see the room where I first laid eyes on Mary and in that instant became the proverbial ‘goner.’ Hopefully I will feel well enough in the fall to travel. I have no shortage of destinations—New York, DC, Seattle, Germany, and today I added Ecuador after talking with a good friend just returned from there.  We have a new apartment in Minneapolis. We moved from the 5th to the 1st floor and have a place with high ceilings, lots of interesting angles, our own front door and a patio. Lately, as seems befitting for someone in my position, I have started reading about spirituality. If you have a suggestion, I would be delighted to hear it. So far I have read James, Robinson, Merton and Chopra.

Once again, I thank you for your support. I could not do this without you. I love you so. While there are clearly clouds on my horizon I am not worried and not afraid. You be the same.

-August 9, 2016

Hug the ones you love,

Dan

Role of anticipation

Today as I drove to get the paper I realized the role that anticipation plays in life. Anticipation fills your days. I used to anticipate a vacation, say to Montana or Europe. I used to anticipate a weekend when I would get job X done. As I listen to people talk, I envy sometimes their ability to anticipate a year or two in advance. A good friend recently told me about his plans for 2020. I don’t have that. I can’t anticipate a year from now. I can’t really anticipate this fall—and I would like to anticipate going to New York or Germany or travelling around the Midwest. I have to learn to leave that fulfilling part of my life out and switch to a focus on the next day or few days. Also I have to learn not to allow this realization to just end any anticipation.  I have to work with this.

As I think about this idea, I have realized that anticipation energizes daily life. You know, On Friday night I will get the grass mowed, next year we will go to Zion National Park, whatever. Holding that anticipation somehow makes today a bit different. I am not restricted to today, I am living in my future. That is what is gone. I am working on creating anticipation for the short term with some ideas about where we could go or do in the long term, but without the commitment that long term anticipation needs

Side effects appear later not sooner

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Yesterday, Tuesday, July 5 I had side effects, day 6 after the chemo session. Stomach hurt, diarrhea, tired.  I finally took immodium and ondansetron and by evening felt much better. Today I feel back to normal. I don’t like those days much but I have to learn to roll with them. After two meals of basically toast and apple sauce, I had a full meal in the evening.  I suspect that what triggered the attack was all the sugar I ingested on July 4 at the neighborhood party—two bottles of soft drink, two pieces of very rich cake. Live and learn.

I have begun acupuncture to control the side effects, stomach and lower gi issues. I was encouraged by the acupuncturist’s professional approach and I felt good after the session. These sessions will go on weekly and we will see how they go. All I have ever heard from people who have done acupuncture is good things.

New Chemo is Working and apply for clinical trial

I sent this email to all my support list after my chemo session on June 29, 2016

Hi, some good news to report. Today’s PSA is 47 down from 84 (I should post a daily update on that number. It would become a big secret betting combine). That decline is 3 weeks after my first chemo.  Good. I had chemo 2 today. Also today I began the process to enter a clinical trial for a drug being tested for prostate cancer. The drug is ipilimumab or “ippy”.  The common name is Yervoy manufactured by Bristol Myers Squibb.  I thank our good friends Angeles and Dennis Vitrella for listening attentively to an NPR broadcast and then following up with MD Anderson who ran the trials on the drug where it was shown as effective with some types of melanoma. I will find out in about a week if I can get into the trial.  I hope so. A little miracle cure would just make my 2016. Link to the original broadcast: http://www.npr.org/sections/health-shots/2016/06/09/480435066/a-scientists-dream-fulfilled-harnessing-the-immune-system-to-fight-cancer

As always, thank you for your support.
Hug the ones you love, (and periodically throw in a stranger or someone you don’t love so much)
Dan

Answers to a Nephew -- 4

--> This is the fourth section of my answers to my nephew.  If you have not read the previous sections, I advise you to read them now. 

“How have you changed your life knowing you have an expiration date?"


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The question about changing my life is really interesting. Since I don’t have a bucket list, I am not dropping everything to pursue one (as for instance in the movie The Bucket List). And I already mentioned that I/we have to deal with end of life issues. But what happens is another question presents itself: What should I be doing? How do I or what do I do to suck the marrow out of the remaining days? I really don’t know. That is troubling to me and I will work on this issue more as time goes on (though I hope for not too long as I would like to get on with whatever it is). But to help me I got to thinking of my two summers in Glacier Park in Montana. To me those two summers are absolutely golden. They are magic. They are highpoints of my life. I hiked all through the mountains, trying as many new trails as I could. During those experiences though I had a feeling of liberation and freedom—the mountains all around (I remember the thrill of seeing the first snows up high in late August when I was on my way to breakfast in the Boy Room), the sense of being in a very desirable place, and the sense of participating (we did a lot together—hiking, drinking, singing.) But then I begin to think of the realities there. I knew my magical time there would end. I lived in a dorm room with 6 other guys. The bathroom was down the hall. I worked in a gas station with a gravel surface that was dusty all the time. I pumped gas and washed bug-infested car windows and changed oil. In one way it was a pretty grungy existence..

So how can that magic appear in what I have now? What can I say? I lived the life that was there in front of me. What can I do now? Participate. Share. Love what I see. I have to admit I understand already in just a few days since The News that I really understand what it means to live for today and find joy in the now. The clouds have never looked so spectacular as they do these days. I think the answer is there. Should is not out there somewhere. A destination somewhere else. Should is here, now, and I have to participate in that reality as best I can, in spite of the dusty workplace and large shared dorm room.

I hope to write more on these topics and in the meantime I hope you will comment on my answers and share them with whomever. Eventually I will probably place this document on my blog. Thank you for the questions. I love doing this stuff—you have to confront the bad, stare it down--and I admire your willingness to wade in and ask.

Hi to all the kids. See you soon.

Love,

Uncle Dan

 

Answers to a Nephew--1

Here is one of the questions my nephew asked me.  Actually this is the last question in his list but I answered it first in the long email I wrote him. That explains my first sentence.

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" Do you feel rushed to complete a bucket list?”

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Let me start with your last question—a bucket list. No, I don’t have one. Years ago an older guy in the neighborhood told us how he and his wife would start travelling just as soon as they retired in two years. Then she died. He never travelled. We decided then that we would do our travelling and our spending throughout our lives and not wait. So now I don’t have a bucket list. I can think of places to go and things to do, but none of them are ‘essential.’ I won’t be lying on my death bed thinking “oh shit, why didn’t I ever…” Where could we go? Rome, northern Italy, Germany, Denmark, Norway, Lowell where the Riordans first lived in the US, Northern New York where the Palmers lived for about 150 years before they moved to Minnesota, New York City, Washington DC, the Georgia Coast, some of the great hikes in the American and Canadian Rockies. But if I don’t get to any of those, I have no regrets. I have been to most of them. What would I like to do? The only thing I can think of is paragliding in the Alps. When we were there a couple years ago we saw people doing that—the expert on top and the client underneath sailing around in the air currents. Maybe that will happen. I doubt it and if it doesn’t, I’ll be just fine. I think that the thing to do is create a bucket list when you are young and work on it. For instance we wanted to go to all 50 states. It took us about 40 years but we finally got all of them. I think the two real bucket list things I did was go to Europe (first time was when I visited your dad in Russia) and then to go to the Botticelli Room in Florence. I had a real sense of accomplishing something I always wanted to do with those two trips.

Answers to a Nephew--2

Here is part two of my answers to my nephew.  If you have not read the introduction and the first part, I advise you to go read those first.

“In your email you mention to think in terms of a year. Was that a major blow to hear that? My dad told me that the cancer you have is not curable basically, but a year seems like a tough pill to swallow."

Was it a major blow to get the news? Well, yes and no. I have known for years that my cancer is incurable and that one day a doctor would tell me what I heard the other day. I have heard other guestimates before (3-5 years, I year) but with each of these estimates there were always more treatments available. The deal with this one is that it is the last treatment in the sequence of treatments. I think I have had 9 or 10. I never counted, but this is it. The only hope I have is that my body just defies the disease longer or that they perfect a gene therapy that would work. I know that they are working on the latter but I suspect it will not be ready in time. We’ll see. And yes. It was a real punch to the stomach. But what can I say? I had been preparing for this and was delighted to find that I didn’t crumble when I got the news. That has been one of the gifts of cancer. I have never been sure how I would handle this news. And now I know and I have done OK.

In a curious way the date is good to know. Knowing it focuses me on things I have to get done in what is called End of Life planning. Get the will up to date, get all the beneficiary stuff correct, get the house in shape to sell after I die (just talked to a carpenter about replacing some rot in the foundation, another couple of grand). And I have to winnow my photo collection down and all my other papers and computer files so that the good stuff can stay and make sense to people and the nonessential stuff gets tossed.

Answers to a Nephew--3

This is the third section of my answers to questions my nephew asked me about my one-year timeline.  If you have not read the introduction and first two parts of this long entry, I advise you to go back and do so.

“Is it ever difficult to keep such a positive attitude and how has that changed? Was it tougher years ago to hear bad news or tougher now? Do you ever just get super fucking pissed off? Does Aunt Mary have the same positive attitude? The kids?"

The positive attitude is easier to maintain since I found out that I don’t have fear. I could never say that this is easy, though. The awareness of a date hovers in the background, like vultures riding wind currents in my head. The issue isn’t so much keeping the attitude as keeping the interest. Some days it is just real easy to think “Oh I’ll get to that tomorrow” or “I don’t really care.”  It is just a kind of depression that hits in. And sometimes I really don’t feel up to exercise, even walking up and down steps to do some little errand. I guess as I write this that it is hard to not let those depressive moments take over. But I haven’t had too much trouble rallying. I am trying to do this part of my life in a way that helps other people deal with this kind of experience. I am trying to do this with some finesse, to be a model. It is the major reason that I am so open about what is going on with me. Actually what is is really hard is the limit that is placed on planning. Everything revolves around the three-week cycle of chemo. I would like to climb once a week. Can’t do it. Maybe I can get one climb in the week before chemo. We think about going to NYC or to Europe—we can afford it and we have mileage besides. Still, saying “All right, we’ll have this week in NYC, those 2-3 weeks in Europe,” is really hard to do. I guess the answer is just do it and worry about the pieces if things fall apart (some of the best financial advice I ever to was “new data, new plan”—it works for just about everything not just retirement savings.)

It was tougher years ago to hear bad news. The washer breaks. The transmission needs to be replaced. No raise this year. They didn’t like my article or my presentation. There is an issue with kids. Now it is easier. Part of it is that I am older, part is that I have enough money, part is that this reality has been with me for 8 plus years. I think it is much easier to deal with this than what I have seen happen to younger people. For instance a young friend had a baby born weeks early. It lived two hours. That blow will take years to overcome. Grandma had to do that with Mary Claire. I and everyone who has supported me in all this is already prepared.

No I don’t get fucking pissed off. Here is the deal. All I have to do is die. Mary has to get me and her through that and then start a new life. She has periods of being pissed off but she doesn’t share a lot of that with me. It would be ok if she did. I sure don’t mind helping, and returning the support favors she bestows on me. I am not sure about the kids. They have not told me much about their feelings, except that it is emotional when I send out the news that my time is limited. Again it would be ok if I heard about it. What I want is candid clear questions and reports and what I want to be able to do is give candid clear answers.

Back on chemo/Introduction to Answers to a Nephew's Questions

Well, no chemo didn't last long. On June 8, 2016, I started a second round of chemo, this time for at least six sessions every three weeks. The drug I am being given is Jevtana aka Cabazitaxel.  Like the last one I feel good for several days, then tired and 'stomachy' for about 5 days, and then gradually ok.  I have my second session tomorrow and I will also find out my new PSA number.  By early June it had risen from 12 to 84 and the tumors were evident along my peritoneal wall.  The facts, however, came with a new unsettling prognosis. The oncologist gave me 8-12 months to live. Yikes.  I sent the information out in an email to children, siblings, inlaws and many supportive friends and relatives.  I had, as I have repeatedly had, numerous expressions of support. Those expressions feel very good. One of my nephews wrote me a series of questions, very candid, that I will answer over the next few posts.  I urge you to read them as they give a good sense of where I am physically, but more, emotionally.

After Chemo--What Next?

My 10th and last chemo was Thursday April 14.  As I write this it is four and a half weeks since then, the longest I have been without chemo since October.  How do I feel?  Tired.  I have been surprised that the tiredness has lingered longer than I expected. Usually during the course of chemo I felt charged up during the third week, able and willing to walk, work out, rock climb, meet people.  But now I am not so charged up.  I only began to work out on Monday the 9th, have not returned to rock climbing, tried biking only to decide I need to wait on that experience.  I also find—and this is troubling—that I am just as happy to not meet people. 

I find I have a drained feeling, not always, but often enough.  I will wait to do little errands if I decided I have done enough for today, even though the errand might only take 15 minutes. I don’t know what to make of this attitude.  I had it right after chemo but then the chemo itself was the obvious cause. Of course in the background sometimes is a little voice whispering “Well, we are shutting down around here. It won’t be long now.” I don’t like that. I don’t want to fall prey to that attitude. I can’t sit around waiting to die.

I can’t sit around period. I have to find ways to combat this sluggishness. Reading helps.  I have read all the Fredrik Backman books—I can highly recommend them. I also read The Three Musketeers, a novel I have never read (it has sort of a grisly ending), and am now working on 1493, which deals with the world changing events that followed Columbus’ landing in the new world in 1492. The course I am most committed to is conversational German where I have worked through over several years all 5 30-lesson units of the Pimsleur courses. I am slowly getting better because I have heard enough now that some of the words really do stick with me.

The question that arises, though, is what SHOULD I be doing? Chemo for prostate cancer is not curative, it is palliative.  Unless some kind of miracle occurs, I have maybe two years to live, if that. Mary and I have decided that we should travel. I wonder whether I should write more, about my life, my thoughts and values, my experiences as a teacher. Probably I should.  But getting to the point where I do that is a major commitment. Completed writing occurs because you start and stick to it regularly. An hour a day, five hours a day, whatever, just regularly. I should probably cull my large photo collection rather than leave that to someone else. On the other hand most of those tasks require me to sit at my computer a lot, and I am not sure I want to do that. I have many photos of my family on the wall behind my computer so I see them all the time and love looking at them, but what if we moved into the cities?  Could we travel more?  Travel requires strenuous effort, lots of walking. Right now I don’t feel like doing that and am not sure I could do that. Ugh.

I hope to return to this topic of what to do in upcoming posts. How active should I be? I have to say that sitting and watching the astounding bird activity in our yard is a very pleasant way to spend time.  Maybe more of that? Maybe stop worrying and do what is in front of me?  If I can’t or don’t feel like getting around, should I just listen to myself and focus on what is here and now?

Plugging along through chemo

February 11, 2016

Not much has happened to me for me to report.  But dealing with cancer is an on going adventure, so here are a few tidbits.

First my PSA is now down to 11 from 330 in September.  The chemo is working splendidly.  Since my body has responded so well, the Dr. now thinks that I could have 10 sessions rather than 8.  He would like to get the PSA as low as possible before I go off chemo and begin a new stage in the ongoing saga.  More on that when it happens.

My side effects are there, but not too bad.  In the four or five days after a session I have constipation issues that I try to manage with Miralax.  For the first few days the regimen is sit for some time before the experience is completed.  Then it is don't get too far from a toilet because the experience does not wait or respond well to quinching.

My finger nails remain discolored. I might lose some of them.  They tend to hurt in our cold weather.  But most of them have moved into a sort of raised and yellow status and while they look bad, they don't hurt much.

For the first two weeks I am often tired, especially in the legs.  I have to watch how much I exercise during this time period.  Too much and, though it feels good that day, I feel mostly like sitting around the next.  Then the week before the next chemo I feel great and exercise as much as I can. I try to climb at least once at the rock wall and workout at the gym.

Probably the hardest part is the three-week repetition.  That schedule puts a damper on any kind of longer range planning. We end up cramming a lot into that "good" week. The result is a kind of boredom/depressive state that had to be dealt with.  I work with learning German and with my photography and photo group to keep engaged.

The support I get from neighbors and friends both via email and in person is wonderful.  The other night we went to a local jazz group's performance and I must have received 15 hugs.  I am humbled.  I draw so much strength from those expressions.

That is it for now.  I keep on keeping on.

Falling in love with cancer

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I had an amazing experience awhile back.  Jimmy Carter announced that he was now cancer free.  His doctors had employed therapy that used his immune system to fight and eradicate the cancer.  My wife said that that would be great for me.  My reaction was “I’m not sure.” What? Sweet Jesus!  I could hardly believe my ears but I could feel the truth of the sentiment inside me. 

I had converted to liking being a cancer victim.  I have made my peace with dying.  I have a life right now that is dominated by cancer such that whatever I do is sort of an in-your-eye cancer decision.  I have a support system of people who want to hear, regularly, how things are going with me.  When things are bad, I get support;when they are good, I get support. Now that I am on chemo, people greet me and ask how I am doing; they do the same when they run into Mary in the store or around town.  But it is not just the external people, it is internal to me.  This life is in its own constricted way very satisfying.  If it were gone, I would have to do some serious adapting. It reminds me a bit of being in the zone, like when I have written a book and that is all I can do for months, all else is marginal.  Or like travelling where the journey is actually the most fun and the destination is sometimes not all that easy to get into sync with after the adventure of the journey.

Can you believe this? During November my brothers led a healing ceremony for me.  My oldest brother read the words and all the people who were there put their hands on me.  The first line he read was “May you desire to be healed.”  And later “May you keep hope in your heart.”  I found in that minute that I was not sure that I did desire to be healed. I  have lived through so many failed attempts just to restrain not even cure the disease, that I found I had slipped into a kind of position in which I saw myself as one who endures.  And of course enduring is actually sort of fun.

I had no idea when I first heard those words that I felt that way.  Now I know.  It is now another thing that I must fight.  And I have begun to do so.  As with many of the issues in dealing with cancer, the most important part of the battle is conceptualizing the problem. And now, of course I have hope and desire to be healed.  I tell you this so that if this infliction falls on you, or if some other one puts you in a similar position, you know that the insidiousness of falling in love with the oppressor is there, it probably will happen to you, and you have to do something about it.

January 16, 2016

Dealing With Death

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In a previous entry I detailed some of the restrictions that cancer has caused.  Here I would like to deal with the daily life of dealing with death.  I will get to the most difficult part first. In October my oncologist suggested that I had a year to live. He was reluctant to be that specific but I was pretty sick and wanted to know what I had to prepare for.  A statement like that was a shock, though not as much as I had thought it might be.  It was a bombshell to my family. I worked to manage their emotions more than I did mine. The children were upset. The two children with young families had to prepare their children for the eventuality that I would be very sick and die.  My brothers and wives were worried. During October and November all of them visited. We had wonderful times—laughing, remembering, discussing what this meant.  It all was very pleasant.  The chemo’s effectiveness has for now taken a lot of the emotional fear away and things are much more normal for now.  It is surprising how the discussions at home have a way of showing up here.  Over Christmas my grandson was very blunt—Was the cancer still inside me? How did the medicine get into me?  He is 6. We had a short but clear discussion as I answered his questions. At my last chemo session I had a picture taken showing the medicine bottle hanging above me and the needle going into my vein so he could see how the drip procedure worked. 

The news of my demise did not frighten me.  I have had 8 years to come to terms with this cancer. I have been fortunate to have had all those years.  My Gleason score was 9. Many victims who have that score do not live this long. I am not sure why I am not afraid but I am not.  One of my daughters asked me about this and I compared myself to one friend whose wife had a heart attack after no apparent symptoms and was gone in an afternoon. I also mentioned a young couple who were pregnant for the first time. The baby suddenly was born at 24 weeks, living only two hours.  Another young couple lost their 20-year old son to what was something akin to sudden infant death syndrome.  Compared to those three heartbreaks and the trauma of them, my news is much easier to deal with.  I even have a good bit of my funeral service worked out.

But I have to tell you that I don’t dwell on death. I dwell on today.  I have things to do. I don’t spend a lot of time on what I have to get done before I die. My affairs are in order. I spend time on joy and satisfaction and communities I belong to.  I lead a photography club, I rock climb, I had led a campaign to erect a sign for a significant historical site near our home.  I recently led a Strategic Planning session, the first one I have ever led. I post every day an “early morning” photograph of some feature within several miles of our house.  I do my best to just accept the limitations that come my way.  Years ago on a plane ticket packet an travel agency had written “The experienced traveller accepts all difficulties calmly.”  I have taken that sentiment to heart.

Cancer gives strange gifts. One of them is the discovery of resilience in yourself. I can do this. I can manage this. I am not put down by this. I will go on.  It is a wonderful feeling to be free of fear. It reminds me of the same sentiment as expressed by Ernest Hemingway in his story “The short happy life of Francis Macomber.”  Another is the outpouring of support, from friends and family all over the U.S. and from various places around the world. I send out an email after my sessions with the oncologist. (These sessions are the only ones fraught with tension:  I have the lab PSA test in the morning. See him in the afternoon. We read the result together. My heart is in my throat as we turn to that number. Will it be up or down?  My blood pressure is always 20 points higher before these meetings.)  Over the years the list has grown mightily from just my immediate family to friends, nieces, nephews, even grandchildren of my brothers. And I hear back from them.  Those messages are so important.  Just a few words of happy cheer if the numbers are down or messages to keep on fighting.  I love them.  One of  my nieces sent me one written entirely in emoticons.  If I can figure out how to get it into this entry, I will. It was so creative.

In spite of my comments about not being afraid and being able to manage the news, I discovered over the Christmas holiday that something else has been at work.  During the holiday all the family was here including the sister of a daughter-in-law and her child. For Christmas dinner we had 18 people. During this time I talked, laughed, danced, sang, took kids sledding and immersed myself in the love in the air.  After they all left I felt strangely light. I had expected to be depressed as the house returned to the quiet of 70-year olds moving around.  But instead I felt liberated.  I explained to my wife that it felt like the cancer had caused a sludge to settle in me. The worries. The restrictions. The repetitions. I had often been irritable during the time after each chemo session. The onslaught of love and activity swept all that sludge away.  It is gone. God, it feels good. My step has more spring. I don’t expect some limitation to happen. Instead I am ready to go forward.  I have put off writing these blog entries for weeks. Now here they are.

Will I be dead in a year?  I don’t know. I hope I have explained myself. I don’t dwell on it. For a while I dwelt on the effect that it would have on say grandchildren. That was too emotional. I quit that.  Then my four-year old granddaughter’s great grandmother on the other side died.  She told me that what happened when you died was that they took you to the cemetery.  That was that. 

If I worry about anyone it is Mary who carries more of the burden of daily life here. Actually I am learning a whole lot more about things around the house that I have let her take care of.  I just can’t sit around and watch her work.  It feels good to get into the household routine. But I try to ease her concerns and worry, mostly by listening when they surface as they periodically do. As with me she needs some changes that make her life easier. We have purchased new furniture for her office, dramatically upgraded our music system, changed some of the way we do laundry. Little things I know, but each of us must deal with the daily and long range concerns of terminal cancer.  What can I say? She has thrown herself into a dietary routine that should help both of us. We work out together. We talk and laugh, always laugh. How lucky I am.