April 2011 A change

I just this week met with my radiologist. He suggested that I see him again in January. I will see my urologist in July and, the radiologist suggested, I should arrange to see him in July 2012. I was amazed. And, somehow, a lid was lifted off me. I feel better than I have in years. I am not afraid, but, still, there is that awful, well-you-are-good-for-three-months feeling. I have had it the entire time. Each time I go for a psa I fill with concern. What if it really spikes? Then what? Propelled by that, well, fear, or awareness, I have crammed a lot into this past year. We have travelled, I have delved deep into family genealogy, spent as much time as I can with family and especially grandkids, and learned to love each moment.

Here is the deal. My psa has slowly, very incrementally risen over the past year. I am now at .1. The cut off is .2. At that point they can no longer say, Well it is random. At that point it is Well it is back. So each time I go to the psa and hope it will be lower and it has not been. Each time I fantasize about the consequences. And now the radiologist, who strikes me as conservative in his evaluations, has said, Let's go to 6 month intervals instead of three month. I floated out of the office.

I have had the stance throughout this ordeal that I keep having a three-month reprieve. Nothing notable this time, so off you go for another three months. My urologist has used the phrase 'cancer free' with me, but, to be honest, I could only interpret that as 'cancer free for 3 months.' This last encounter has left me basically very uplifted. I am surprised at how all of a sudden I am thinking far in advance--which means what we might do next year--and not focusing on what today and the next few days.

I find, as I have said before, that I am not worried or afraid. What is, is. I know fear and I know its relative anger. I don't have them. I can face this. But I have to tell you that it is ok to face it later, rather than sooner. I want, I find, so desperately to have my grandchildren remember me. And this disease has pushed me into a way of relating to those kids unlike the way either my father or father-in-law related to my kids. I try to be more involved and personal.

And so, off I go into the summer. I still have July's psa to deal with, but whatever it is, will be fine. Over and over I learn the gift of cancer--I love better and I enjoy more. Love you. D

May 2010 the decline continues

This month my psa was drawn again. It is .036. It has dropped minimally since my February psa analysis. That decline continues to be good news. I will have to see my urologist in August, after that draw.

This lower psa makes me glad that I have chosen to retire. Even though I am fascinated by the process of changing a culture and have some success at it, the window of health presented by the numbers make it foolish to not go now. I am looking at the Travel section and the travel magazines with new impulsive attention. I plan to take some of those trips, but in the US and in Canada (Newfoundland) and abroad (Norway).

In addition, the lasting effects of my battle are weight that I am having trouble losing. I have been at 205 or so for months. Hopefully exercising after retirement will bring me down to 190. And ed. This condition remains strong (or weak depending on the outlook). I am not sure how to resolve this. Maybe I will return to cialis. But what I have found is that a marriage based on love, respect, and appreciation can accommodate this condition. And, since my wife is such a fine cook, I can live the old adage "Lovin' don't last, cookin' do.

I am looking forward to a summer of biking and some area travel.

Cancer Free for a Year

I originally wrote the following paragraphs in early February 2010.

I just returned from my yearly urologist checkup. I am cancer free. Thanks to you for all your support. It has been so important over the past two years.

Here are the details. My PSA, which I had drawn in early February, was .04. That is ‘undetectable;’ in my condition anything over .2 is worrisome. Since my radiation treatment the psa has never been as high as that. It is also the second time it has gone down, which is the trend my radiologist said to watch for. The meeting with the urologist was very short. He once again told me that I had made the correct set of decisions by doing surgery first and then radiation. Had it happened in the other sequence, apparently things would have been much worse for me, granted the aggressiveness of the cancer. He also told me that had I waited another year, it would have metastasized, much to my long life detriment. So Mike, Joanne, Michael, Danielle, Morgan and Madison, thanks for throwing that/being willing to dance where I wrecked my knee trying to show off. That’s when they found the cancer. Joan, thanks for insisting that I contact Dr. Sershon. Mark, a hug from the heart.


What next? Well, I keep up the psa every three months and see the Dr. again in a year. If I am still cancer free then (you can see with that choice of words why I am not just totally jumping all over the place), the worst is over. In the meantime, I am the ‘didn’t work’ poster boy for Cialis ads—but I have never seen the point of TWO bathtubs out in the woods. The dr told me he could solve that problem by teaching me how to give myself a shot in the appropriate place, but I told him I would let him know.

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nine months later

It is just about nine months since I finished radiation. So what has happened? Well, to get to what is most important to many people, the ED is still there. The incontinence is gone. The weight I gained is still on. The hemorrhoid is essentially gone, though I have not gone back to eating salads and periodically (like this morning) there is a 'tag' which causes some bleeding and discomfort, but not the YEEOWW! reaction that I had early on. As for ED, I tried cialis in various dosages. It never worked all that well to create EF (erectile function) and it gave me one good headache after another. So I quit. I don't use anything now. We have adapted our life to that reality. Our marriage is not based on sex alone and so we have had other pillars to support us even though the one pillar is not very sturdy.

But let's talk about cancer. Since I finished radiation I have had 3 psa drawings. The first was .001. In other words undetectable. I went gleefully to see my urologist, Dr. Sershon, who threw water on that glee. I was still under the influence of lupron and for all practical purposes the reading did not count. It was being artificially suppressed. The second one, in August, was a shock. It was 0.145. Well, while that seemed like a huge jump, it wasn't a jump into bad territory. For my urologist and my radiologist to be concerned enough to recommend further treatment (or, I suppose, getting my affairs in order) the reading has to be above 0.2. As a result of the reading the urologist did not even call me to comment on the reading. Nothing happened so I continued on with life. Then in November I had another draw. This time the reading was 0.11, down from 0.145 three months ago. This is good. The radiologist, whom I met with later in November (once again, since the reading was below .2 the urologist did not call me), explained that after radiation typically the psa goes up (which mine did) and then starts down (which mine did). That is what is supposed to happen. If it continues it means that the radiation was effective. But it takes a number of psa tests over a period of time to establish a pattern. So I will have a psa taken every three months for the next year, actually five more times until 2011. If the psa gets to 0.1 or lower it is regarded as negligible or even undetectable and as long as it stays in that area, no treatments are recommended. As near as I can tell, it is not possible to get a psa of 0.000. My number has gone from 0.145 to 0.11. It has fallen .03 and if it falls .01 more it will be negligible.

Now how does all this feel? Well, as I have said, I am neither afraid nor worried. I don't wake up in the middle of the night with the hollow fear of death slithering around me. But to say that I pay no attention to these tri-monthly experiences would be false. What I find is that as the time for the drawing approaches, it is difficult to make decisions beyond what I will do today and tomorrow. I tried to think about buying a new car this autumn. No go. I will try again after Christmas, but who knows? At work I through myself into strategic planning, but mostly I found myself (and so did my co-workers) grumpy. Staying in my office all day felt good. Right now, with weeks to go until my next draw in early February, I am pretty carefree. But that tightening will come again. What can I do? what is is. But actually the time after the draw is worse. This time I did not get the results for days. I expected a call from the urologist's office; none came. Even though I had my work done at their place, they told me it would be ten days. And even then I had not heard. When I have the draw in Menomonie, I have the results in two days at most. I heard the reading at the radiologist's. The nurse just said 'oh, your psa was 0.11.' I felt a glow completely unexpectedly. The radiologist told me to come see him in a year. I will see the urologist in February, which will be one year since I finished radiation. Interestingly, I had that same glow after I had the draw at the Woodbury office. Somehow, having the wait over and the draw taken, was a huge relief. I felt so light and airy all the way home. Strange.

During these months life has been wonderful. We went to Europe, met wonderful people in Czech republic and Germany. Will Daniel was born in mid-October. Nate's fortieth birthday and thanksgiving were exuberant. Everyone was here for that event. We had a houseful and I loved it. I am buying trundle beds so no one has to sleep on air mattresses again. Mary and I spent her 67th birthday in the city at the MIA. We had fabulous meals and Cheers-everyone-knows-our-name experiences at two different restaurants. I told the provost that I would retire June 30. We have trips to Seattle and back to Europe--Scandinavia, Germany, Czech Republic, Switzerland, Italy--planned for 2010. Perhaps Hawaii in December 2010. We rented, with Clare, an apartment in Minneapolis, down by the Stone Arch bridge. I still love my job and I can see not only that it is creating some change, but the path to keep the change going.

I can't control what will happen to me. I know I would rather die of cancer than of alzheimers. But I can't dwell on that. There is today, and tomorrow, and then all that time stretching out like those long shadows cast by the trees on winter solstice as the sun reverses direction and starts north toward summer once again. Love. Dan

Radiation is Over, Now What?

Radiation is over. It ended on Feb 9. We took chocolates from Legacy Chocolate to the radiation therapists. They gave us a mug from mnAngels and a Goodbye certificate. We had hugs all around. And then done. I was surprised. I sat in the car and suddenly the emotion came from nowhere--I had not been feeling emotional--and overtook me. I sat there and cried. We took the rest of the day off. It was a Monday and the only museum open was the Science Museum so we went there, a bit against my desires. But we had a fabulous time. I loved the water exhibit, and I can't get enough of dinosaurs and the history of the earth. And we had an ok lunch in the museum. Then home.

The aftereffects? I still get tired in the evening and I have a mother of a hemorrhoid. That is it physically. Psychologically it is a bit different. At first I had that Zone feeling that I have talked about before. It seemed odd to be at work all day. That feeling went away. Work is easy. I like what I do and whom I do it with. I am learning how to be a director and am finally thinking big, rather than small, get the work done. I want a building and an endowed chair and a really big grant. Anyway it is easy to come to work and to get into the events of the day and commit myself to what needs to be done, and to think of new things to do.

But there is something else. I will be 65 in several weeks. I am not really ready to go, but more and more I think about going. How much time do I have left? I don't know. Radiation is great in one way. I just threw myself into it. Every day. Now that it is over, I wait for May for the psa. That test will position me. What will be will be, what is is. But the waiting is not particularly fun. So I have begun to think about spirituality. Not exactly religion, though the two are so intertwined as to be indistinguishable. I have tried breathing on my own. Just take it in. I learned to do this in pilates in Houston, but it is more relaxing than I had thought and it is more connecting--with myself, my body, and the world--than I had thought. But I know nothing really. I need to train myself more, to learn how to enter the system of meditation. I will work on it and let you know how I come out.

In all of this I have been impressed by sacramentality a la Thomas Merton and by the choice of what to do next. I like sacramentality. I have been doing that all my life. That is what travel and photography are about. About next I am not sure. Next is working with Stout and affecting that system or next is finally returning to the fun of being an undergraduate or a graduate part-time and working part-time? Next is keeping on to see what can happen? or leaving and doing the traveling and living abroad I have never done?

So that is where radiation has left me. On the edge. I sort of like it here. That is it for now. I need to work on these ideas a bit. What if my psa is high in May? Ouch. And if low? Also ouch? Sorry to be vague. I'll return to this again.

Thoughts near the end of radiation

Near the end, or at the beginning.

One more radiation session to go. We will go in tomorrow for the last one, unless, as is predicted, there is an ice storm. Then we’ll go on Tuesday. This episode in our lives started 63 days ago. Thirty-nine trips in, 3 cancellations (snow, ice, sick). So where am I?

First, I have finally realized that this experience has been one of ‘going into the zone.’ The zone is where you go when you focus intently on something for an extended and regular period of time. I have gone into the zone on every book project I have undertaken. It is always hard to enter the zone but once inside the zone organizes things for you. I decide when to sleep, what to eat, what to wear, what projects to take on, all based on the zone. How will it affect what I do every morning? Inside the zone, things are relatively ordered. There is a kind of energy in there that doesn’t exist outside the zone. To people outside the zone your being in it is both slightly troubling and an easy source of concern or pity. People ask How can you do it? Doesn’t it get old? Well, no, it doesn’t. And as my brother-in-law Jack once said about something else demanding (mortgage payments), You just do it. I have watched the countryside, studied it with my gps (fun to follow the profile of how high and low the road reaches), listened to music, sat quietly, talked intently, chatted a bit with other patients at MOHPA, taken my session, queried the therapists about the machine, the process, the numbers, and a bit about their lives, usually their weekends.

The problem, I realized on Friday, is the common problem of the zone—coming out of it. All of a sudden the daily routine, the ordering of energy and time, is gone. Not only do I have to have a new routine, about work, and everything else, I have a new, scarier, sense of ending. For the radiation, the end is tomorrow. After the sessions, the end is the every-three-month psa test to see if the radiation worked. If it didn’t, I’ll be back in for something else. I’ll get back to this in a bit.

Second, what are the physical effects? Well, I began this series of treatments under the assumption that I would be dragged-out exhausted at the end of them. It hasn’t really happened. I don’t have the same pep, the same willingness to go do something that I did before. For instance today would be a great day to snowshoe on the creek. Several weeks ago that was a no-brainer—nice day, let’s get out there. Today I think Well maybe. It is tougher to get up for extra stuff. We periodically talk about going out to eat, but then it is so much easier to eat on the romantic porch of Chez Riordan overlooking the lake. We talk about the movies, but frankly it is easier to not go. The biggest physical effect has been a hemorrhoid (which I have also learned to spell easily). I am now taking baths in baby shampoo, using Tucks and Anusol, and eating what is called the destress diet—white bread, white rice, yogurt, cereal, ice cream, process vegetables, canned fruit. But that baby hurts. I finally bought a doughnut pillow. As a result of eating those foods, I can’t lose the 10 pounds of stomach that I would like to lose, but that might come when walk-to-work season starts again in a few weeks. The daylight is long enough for safe walking but the ice on the streets and sidewalks is something I don’t mess with any more.

The other physical effect is the lupron result. I have detailed this elsewhere so won’t go into it here, other than to say the libido is gone. I have not been particularly emotional nor have I had hot flashes, nor have I watched any chick flicks. I had my second shot on Friday, a three-month shot, so there is little point in checking my psa now because the lupron and radiation will have it near zero.

Then, third, there is work. I have found it easy to get into the job when I get into the office. The way I do the job, there is a lot of email contact and so when I sit down to check email there is plenty to do right away. And like all computer time after I type away for a while suddenly a couple of hours are gone. I am trying to set up my work so that I manage facilitators instead of facilitating all the groups myself. That required a lot of my time during January but now is running, we’ll see how well as the semester goes on. At the same time the job grows and continues interesting. Amazingly, to me, I was asked to sit on the Provosts Council, so have at least a voice in many of the university’s issues and directions. Like I say, amazing. This the guy who decided thirty some years ago not to become an administrator because they spend so much time in meetings.

Fourth is the What next? issue. I haven’t spent much time on Why me? or What if I die? but, well, you can’t have this condition and not reflect on things like this, at least the second one. The first one I have never dwellt on. What is, is. I have said before, I am not afraid of the death question, but with it out there, I have asked other questions, to which I don’t supply very good answers. The key one of course is should I retire? I like the job and the people I work with. I can see an effect from what I do both locally and even statewide (in some very limited circles). That’s nice. I love it. It has allowed me to redo my sense of my past, to let some issues go (and I must say, they are gone), and to see my abilities in a new way. I like this contributing to the public good.

But, I will be 65 in 39 days. How long am I going to do this? How long do I do the get up, go to work, come home, sleep routine? Where could my photography go? Where could we travel to? I can think of lots of places to see and lots of photo series to take. I have started reading again after a long layoff. How would it be to move to the Twin Cities, to be an easy part of daily, or at least weekly life there? We could afford a month in Italy, what would that be like? What would a month in New Mexico or South Carolina or Georgia be like in January? What is a life of hanging out like, sort of a return to college days without the pressure of producing stuff? For that matter what would the pressure of producing some of my little pet projects be like? We have this window now. It could end tomorrow. Clark was fine in June, then the damn stuff metastasized and took him. (Every day we drive past Hudson. Every day it hurts.) So, I don’t know. What I do know is that I, we, will handle tomorrow and the days after. This experience has been a challenge and a revelation. I can do it. So here we go.