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.

Pictures of my Innards

Dan's Innards

Hi, in every session the therapists take a picture of my pelvic area. Most times that picture is an xray though about every 5th time, it is a ct scan. The results of the xray are that they can see the pelvic bones, front and side. The results of the ct scan are that they can look "through"me. One therapist described the process as creating slices of bread down my body and then looking through them at one end.

The purpose of this part of the process is to align me. In each instance they compare today's picture with the benchmark picture that they took on day one, when they set the tattos. By slightly adjusting the table that I rest on, they can align me today exactly as I was aligned on that first day. As a result the beams of radiation hit the exact spots that the doctor wants irradiated. The two gold markers that were inserted some time ago are used for the alignment, and are, apparently, essential to creating the duplicate position.

In the pictures below you can see parts of the process and both kinds of pictures (xray and ct) used in the process. In the first picture notice the red laser beams crossing on my right pelvic area. The horizontal one is at 9.4 (9.4 what I am not sure, but that number is said outloud every session). The vertical one guarantees that I am at the same lengthwise position. With my body basically in place, the therapists use the pictures to align me left to right. And they use the pictures to make minor adjustments based on the location of my bladder that day.



The second picture is the xray. Due to a camera failure (my fault) we only have this one photo. Mary had taken some others that showed the relation of the benchmark and the daily xrays but they did not come out. The third picture is the ct scan, which as you can see is completely different. While I can guess-read the xray, I am not sure what to make of the ct scan. I would guess that either they can superimpose one image over the other or they have a grid that compares locations and gives the coordinates for repositioning me. I would say that most times, but not all times, I am repositioned.

Half way through.

Today I was radiated for the 22nd time. At most I have 18 to go. So how is it going? Well so far I have not experienced any radical side effects. I am a bit tired. Going to bed at 9:30 now seems like a good idea--and I usually fall asleep within two minutes. I am constantly asked about diarrhea-don't have it. On the other hand I have had the pleasant experience of a hemorrhoid. I love the first moment you realize you YA-HOO have one. It turns out that some of the radiation passing through me uses that part of me to exit. Such fun. But I use Tuck's Anusol and have been living with it. I also stopped stationary biking.

What else? Let's talk about bladders. The deal is that I am supposed to lie down on the table with my bladder full. A full bladder raises itself up away from the prostate bed area and thus the radiation radiates the bed not the bladder. Well, the issue is to get the bladder full at the right moment. Too late and I get zapped. Too soon and I wish I had worn Depends. Here is the amazing thing. My body has learned how to do this. In the first three weeks I several times showed up too full too soon and ended up trying to 'top off' my bladder, that is, reduce the volume inside it without losing everything. Difficult. You try it. Let off some of a full bladder and then lie there for 20 minutes.

But here is what happened. I set up a routine. I eat breakfast at 6:15 because I can't eat within three hours of radiation which starts at 9:30. I drink a cup of coffee then too. OK, at 8 we leave. Just before we go, I pee. Then we head down 94 for the 65 minute ride. At about 8:30 I start sipping water (I have to get down 16 ounces). At about 9 we pull into the Minnesota rest area and I hop out and use the facility. Then I get back in, drive to MOHPA all the while sipping. I sit there comfortably in the waiting room. Lie on the table feeling like Let's move this process right along, and when it is over, hit the men's room for a, as they say camping, copious and clear event. The amazing thing, to me, is that when I started this, I was often uncomfortable as I got to the rest stop and often not quite full at the treatment. I changed nothing. Now everything works as I want it to. My body trained itself. I mentioned this to the therapist and she seemed to think that this happened to others. Well, if the body can train itself to pee, it can train itself to defeat cancer, so I have begun to order that.

To change the subject, the ride over is surprisingly interesting. I drive over, Mary drives back. Instead of being bored, I notice things I never saw before, and I have driven it hundreds of times. Also I find it easy to 'zone' just merge with the landscape or else review an issue like how should I handle something at work, or should I retire.

I have taken all the Fridays of January off, using the FEMLA provisions that all workers have. Last Friday we visited Jane in her classrooms. What a gas. I would love to get into ESL teaching. What a fabulous group of kids, and what a great set of learning problems and opportunities. For instance, how do you get kids to get comfortable with the little words that go before and after a concept--from My brother critic my driving to My brother is a critic of my driving and then to open up that there are lots of other ways to get at this My brother criticizes my driving. I think that it must be like learning how to get to a site from your house in a big city. You learn one way and not until you have some confidence will you find the other ways.

That's it for now. I have to write about mortality and religion yet. Nothing quite like realizing one day that the thing talking to you is saying Hi I am your mortality and I might shove off. You ready? And for religion I have been really impressed by Merton's sacramental idea in Seven Story Mountain and Robinson's ground of being in Honest to God. And then I started Confessions of St. Augustine. The first several chapters are amazing. Nothing has changed in and for adolescents for the last 2000 years if he is typical. But more on that later.

One last thing. We took up snowshoeing on Wilson Creek. Love it. We have been down there a number of times now. It is quiet. There are lots of animal tracks. I get a sense of the lay of the land in our area. The rock cliffs and outcroppings are impressive. And it is good exercise and that clears out some of the radiation cloud that inevitably forms.

This experience focuses me. It is not unlike other focusing events I have had in my life, though none of them had the mortality sidebar.

A day to and from radiation

Here is December 30, 2008 trip to radiation. I don't use an alarm and have never overslept. All told this day we were gone two hours and 51 minutes. We drove 129 miles. The actual radiation session took about 12 minutes.

5:56 Wake up, look at the clock, turn back over.
6:07 Get up. No shower this morning. Go down to eat before 6:30
6:35 Decide to go. The predicted snow is not falling.
8:06 Get into the Camry. 85031.
8:12 Merge onto 94. Very light snow. 85033.
Mile 24 blowing snow. No slippery spots. Snow reminds me of smoke on the road.
8:36 6 oz. of water. 85061.
8:39 More snow, heavier. 85066.
8:46 Snow worsens. Decide not to turn back. 85073
8:48 St. Croix River Bridge. 85075
8:52 Rest Area. Two buses but not crowded. Urinate and defecate. This will be the pattern. 85078.
8:58 Merge again onto 94.
9:06 Merge onto 694.85085.
9:15 Turn onto White Bear Avenue. 85094.
9:20 Park in the Mohpa lot. 85095.
9:23 Register on Radiation computer.
9:29 Called in to radiation.Remove shoes. Lie down. Two x-rays. 7 radiation positions. Move/pause/generate/pause/whir/pause/generate/pause/whir/move and repeat. About 56 second in each position, plus time taking the x-rays and waiting for the doctor to check my position.Plus the time to walk in, take off shoes, get settled on the bed, get laser-adjusted on the bed and the reverse at the end, plus a urination. The bladder was filled just right this morning I thought. I will explain the position process in another writing. All this on the Varian machine. More on that later too.
9:45 Greet Mary as I come out of the door.
9:51 Turn onto Beam Avenue.
9:55 Merge onto 694
10:04 Merge onto 94.
10:13 St. Croix River Bridge.
Mile 17, 40 more acres for sale. More mile posts Ken Heintz creek, Wilson Creek, slippery at Mile 40
10:57 Turn onto Broadway. 85158. Menomonie, 14937. Streets slippery. Mary decides not to go to Colfax this afternoon.
10:55 Turn onto Meadow Hill Drive.
10:57 Enter garage. 85160.

A Day in the Radiation Machine

December 13, 2008

I have completed four actual and one simulated radiation treatment. Here is their scenario.

It takes about an hour and five minutes to get from our house to the MOHPA clinic in Maplewood. We have been arriving about 15 minutes early. For a 4:00 pm treatment we would leave about 2:45. The drive is easy, a bit long, rolling Wisconsin countryside, including two herds of buffalo.

At the clinic I sign in, by typing my last name into their ‘radiation computer.’ When I click enter, the radiation therapists get a note on their computer that I am here. At the appointed time—so far they have been late only once, more on that below—one of them comes to call me in to the treatment room. In the room I take off my shoes and empty my pockets. One of the therapists holds a modesty towel close to my belt and I undo the belt and slip down the pants and underpants far enough so that I expose the three tattoos that they use to line me up. You can see one of the tattoos in the photo at the above left. It is about 2 mm wide.

As you can see on the picture above on the right, I lie on a bench, an elaborately technical bench about 19 inches wide and seven feet long. My feet go into the mold (the white thing under my feet) that they made on my first planning trip there in November. My head lies on the pillow and, to keep my arms from flopping around, I hold a plastic ring which lies on my chest; that’s what my hands are doing in the picture. The bench has no padding. The idea is that my body must be in the exact position that it was in on the planning day. Padding would add another element of inexactness so there is none.

After I lie down the therapists move me around using several laser beams targeted on my tattoos so that I am in the exact same position, or nearly so, as I was on the planning day. You can watch this process in the movie below at the end of this post.

As you can see in the photo, above me is a nice large photo of a seascape. After the therapists leave the room, they dim the lights and the bench slides me into the radiation position closer to the center of the machine. I am in that position in the photo above.

During this first week, I have had a two-part treatment. In the first part, the imager (the square thing hovering above me in the picture) takes “quick CTs” of my pelvic area. Back in the control room—I will write about that another day—the doctor and the therapists align that CT with the one taken on the planning day. They are looking for an exact alignment, as they deal with tolerances of less than a millimeter. One of the reference points that they use are the gold markers that were inserted in me some time ago.

Once I am aligned the actual radiation treatment begins. The radiation unit (the radiator?), aka the 'linear accelerator', which is the round unit with the blue ring to my left in the picture, rotates overhead around to a position underneath me on my right. Call that position 1. In that position it emits two bursts of radiation. Position 2 is slightly higher and so on around me. Position 4 is directly above my pubic bone and then there are three more. Position 7 is underneath me to my left. In each position there are two bursts of radiation, that radiation being X-rays. They used to use cobalt but don’t anymore. The bursts are aimed at locations that the doctor has identified as highly probable to have cancerous cells. The bursts are not emitted for a length of time, rather they are emitted for units of strength. The actual length of the burst is determined by how long it takes to get through various environmental factors, such as humidity, in order to impart the number of units to me.

That’s it. The whole thing takes about 25-30 minutes from the time I enter the room until I put my shoes back on to leave. At this point in the sequence of treatment there are no noticeable side effects. Having one of these treatments is like having an x-ray of a broken bone. Right now I feel fine. No tiredness, no nausea, no pain in my pelvic area. And to repeat something I said before, no radioactivity that I carry around beaming at others. This is not the same as chemotherapy. They are microwaving me, not creating Chicken Kiev.



Let me add just a few notes. While this sounds like precise science, and it is, I am the factor that changes and must be accounted for. The issue is the amount of water in my bladder and the amount of gas and/or ‘matter’ in my bowel. I am supposed to duplicate the bowel/bladder configuration of the planning day. Well, easier said than done. The basic plan is urinate and evacuate one hour before the treatment. Since we are on the road that is not possible unless we happen to hit the Minnesota Rest Stop west of Hudson. I go when we leave. Then 45 minutes before the treatment I am to drink 16 ounces of water, which I do faithfully. The water reacts differently. In the early morning treatments, I never feel full, not like I have to urinate Right Now. The doctor even chided me that I was not full enough. In the afternoon treatments I often have the sensation, as my dad used to say, that my back teeth are floating. Twice I have gotten to the clinic and realized that I could not hold the stream for 30-40 for minutes, and one time, because of a technical problem they were 20n minutes late. Both times I snuck into the bathroom and relieved my self of a little of the liquid in the bladder, no small feat for a guy who wore Depends not even a year ago. And even after doing it twice the day the machine had problems, they still told me that my bladder was extremely full.

The point of this concern is that they want the bladder out of the way so that the small bowel gets pushed out of the radiation field. I will eventually get a better explanation but, as I understand it, they want to avoid the bladder and the rectum with the radiation and just hit the infected area. That is the point of the gold markers and the alignment and even of them moving the bench slightly one way or another.

One last note. I am learning all this. I am sure of the physical descriptions and sequences that I explain here. I am guessing at the rationales. I have asked the staff. They are patient and clear with their answers, but I probably have mistakes here. Just so you know.

Prostate Cancer and Sex, part 3

December 11,2008

The amazing thing about living with someone for forty plus years is the depth and breadth of the relationship. Life becomes a kind of endless dance where we anticipate each other’s moves and swirl gracefully into them. And that dance includes finishing each other’s sentences, knowing what scene in our past this current scene makes us think of, even getting up at the same time in the night to go to the bathroom (thank the lord for houses with two bathrooms). Of course that dance extends to sex. A certain look (yes, there actually is THAT look), a certain phrase, a certain wiggle or giggle, and the deal is on. This much time on dishes, that much time on email or tv or phone calls, or wine drinking, and then up to the bed and the, ah, consummation. If that look happens at breakfast, there is an entire day of something akin to squirming, waiting, anticipating. The drive home is sweeter, the meal tastier, the book less interesting. And if it doesn’t happen today—the day was rotten at work, a cold or headache started (for real), exhaustion kicks in—that is ok, because there is tomorrow. There is a basis, a bed rock, to life together, an understanding, an understanding that this important union is always possible, always there, always part of yesterday, today, and tomorrow. It is the air we like birds fly through, the water like fish we swim in, always there. And now it is gone.

As I said in an earlier post, really gone. Images, situations, fantasies that used to work, not only don’t, they seem remote, even silly. So there I am, full of lupron, the testosterone done, the psa down, the desire not down, gone. And what of that dance, that air, that water? Gone?

For some people it is gone, and their marriage is over. Ours didn’t happen that way. Instead, I discovered--I think I always knew it, but was never tested—that we had woven a strong cloth and the sex was just one of the threads. The cloth didn’t unravel. All those years of traveling together, acting together—the kids, the book, the family crises, the parental deaths and worse the run up to those deaths, the laughter, the meals, the sense that we, together could accomplish anything, could get through anything, all of that kicked in. The rug got pulled out from under me but I landed in her arms. Her smile still there, her eyes like they sparkled on our wedding day (and among other days those when they were conceived), like they sparkled when we strode into Siyeh pass the first time, or the time we touched Emerald Glacier. Or the time she got off the train in Raleigh, just back from Europe, her hair short, wearing the scarf and coat it took me years to let her give away, that moment when the deal went down.

At any rate our history, alive as it is in the moment, and in the forecast for the future, sprung alive in a way that surprised me. Those moments, glances, dropped code words, gone, but not the support not the joining, the joining of a different type than sex, but, it turns out, as powerful. And so we can make fun of ourselves in situations that would have led to ‘intimacy,’ now passing at best with a smart crack and at worst unnoticed. I have had to learn to be sure to touch, to soothe, to run fingers through hair, to, with all the thrill of a 14-year old, cop a feel, accidentally run my hand over her ass, give a kiss. What can I say? I have been blessed with an incredible gift from cancer—an awareness of a depth that I not only did not know I had but didn’t know existed. I trust that the lupron and its effects will pass (at the end of May) and that at least some of the old way, old dance will return, but it will be so much richer for what I have found and can live now. Cancer gives strange gifts.