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.
Tuesday, December 30, 2008
Saturday, December 13, 2008
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.
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.
Thursday, December 11, 2008
Prostate Cancer and Sex, part 2
December 8, 2008
Anyway on to sex. There are two issues—emotional/relational and physical. Let’s talk about physical first. The deal is, Can you get a hard on? Well, sorry, erection. My answer is yes, with difficulty, and nowhere near as hard as before. Let’s talk about that. The basic rule is Use it or lose it. But the physical reality is that those nerves were severed, even though laproscopy, which I had, is more precise than the previous method of the incision from the belly button to just above the penis. The result is that what used to happen, well, more or less with a thought (remember the 5th grade joke? What’s the lightest thing in the world? A cock, because it can be raised with a thought.), doesn’t. Thoughts won’t do it. So the usual fantasies, whatever yours are—you don’t think I’m going to tell you mine, I hope, not on a free blog—won’t do it. I couldn’t/can’t get into much of a ‘state.’ I tried looking at porn, reading some porn, and, while I understood the attraction of certain scenes, even words, and poses, not much happened. By that I mean that I could get to a state emotionally where I wanted to have sex, but no matter how I went about it, the erection was never the, well, rod it used to be. Talk about the spirit willing but the flesh weak.
Now an interesting thing—during this period, from roughly 8 weeks after the operation until about one week after I received the lupron injection, from March till October, though the erection was weak, the orgasm was not. The orgasms were fantastic, among the best I have ever had. They went on for a longer time and the intensity, the way they grabbed me inside, in my chest and head, was more powerful than nearly any I had ever had. I wondered before the first one what it would be like without an ejaculation. I was surprised. It was exactly the same, same buildup, same quivering, same peak, same screaming climax, same feeling of let down and being over. Now the one thing I will reveal. Since these accompanied an erection that was not particularly erect, they took place in my wife’s hand. There was no, well, mess, another surprising thing, and I found I didn’t miss it.
During this period, I was supposed to use two aids to erection—a vacuum pump and one of the erection pills, Viagra or Cialis. The vacuum pump is exactly that, a pump. It has a long tube that fits over the penis and a pump handle on the end. A person, me, lubricates the end of the penis, so it will slide in the tube, and also lubricates the front edge of the tube so that the tube fits against the body with an air tight seal, thus allowing the vacuum to work. The pump creates a vacuum and the vacuum makes the penis extend from its limp state into the cylinder in a semi-erection. The idea is to pump the handle and enlarge the penis, then push a button which releases the pressure, and the penis shrinks back to its original state, then pump again. During each cycle the penis gets longer and more engorged. For me it never got to a consistency that amounted to what I would think of as a ‘usable’ erection. The company supplied some rubber band-type objects that could be applied to the base of the erection, preventing the blood from draining out, and the result could be used in sex. According to the literature that came with the pump, this erection should work, leading to fun and excitement. For me it never did. Frankly I got as far with the porn as with the pump. I still use it but it is boring. Each daily session is 15 minutes, so I drop my pants, turn on a TV, one of the ones that are out of the way, and do the ‘exercise.’ I call it, not very reverently, a vacwhack, but I suppose that merely serves to cover my frustration that it has not worked particularly well for me. I keep at it. The literature, and the sex therapist, say it eventually will work, and that as a result of using it, I will not lose it.
The other strategy is the erection-aid drug. You have no doubt seen those ads of a gray-haired guy, usually with a woman young enough to be his daughter, dancing off the floor to the elevator which they take to an upper, secret floor and a night of wild bashing, lashing and crashing. I doesn’t happen like that, at least not for me. Remember I mentioned headaches? I got them. Over and over I would take one of these pills—note that they don’t make you horny, they only get you an erection; you have to make yourself horny, though what guy my age wouldn’t be so at the thought of a sweet young thing not only choosing him, but expecting that she could get physically from him what she couldn’t get from some 25-year old? Ah, well, what bull. The headaches. The next day after taking one of these my head would pound, and pound. Just like the bad old days, it felt like a nail driven through my right eye into my brain. I spent a number of next days dragging through the rituals of the day. And to combat the headache effect, I began to drink a lot of water, 4 liters a day. That helps some, I have to admit, but of course if you drink that much you pee that much. So then I was like the guys in the ad who kept missing the big event (and being not so much laughed at as tsked) because I was constantly running off to the bathroom.
These pills come in various sizes, 40, 20, 10, and 2.5. I kept lowering my size intake, hoping to get to the therapist’s recommended intake of three times a week. I couldn’t. No way could I do that and go to work or have any kind of day on the days after I took the pills. I have to admit there was a certain licentious thrill to taking them at first. I was one of those guys who could chemically overcome the body and perform for my woman, satisfying her just like I did 40 years ago. No doubt there are many men who have very satisfying experiences with these drugs. I didn’t. As I said I got as far with the porn and that was not all that far. I will keep at this of course, but the failure of it to work has led to some other emotional realizations.
I suppose that the medication that bounced me into another realm was lupron, an estrogen. Lupron reduces testosterone on which prostate cancer feeds. Less testosterone, less cancer. It is admisnistered in a shot (in the butt) that lasts for four months. I got the shot. It worked. My psa was cut by more than half. The upshot though is a total loss of libido. I mean total. I have to admit; I have seen many sexy women and pictures of sexy women. It used to be that I would look and think ‘nice.’ My wife and I had a kind of dance, you know what I mean, that could go on for two days, extended foreplay, thrilling, fun, compelling, satisfactory beyond belief, never boring, never something to take or leave. Now I don’t notice, hardly look, and never think ‘nice.’ At most I look and think, I used to think nice, now I just look. In other words I exist in the world sexlessly. There is no desire and no action. I had to learn that I had to still fondle and kiss and touch and caress and make jokes. I did, and I feel good about that.
So let’s go on to the emotional/relational side of this. I have already done quite a bit of explanation of the emotional. In the early months the emotional desire was there and could be acted upon. We could do the dance and hop into bed and, though the mechanics were a bit different, have a satisfactory, thrilling event. (Sorry, in spite of saying earlier that I would be candid, I can’t. A) it really isn’t your business and B) use your imagination.) But the point is that the physical and emotional changed, but remained at least similar to previous.
With the lupron that is over. No hopping into bed, no thrilling, and, in that sense, no satisfactory. If that were the basis of our marriage—no thrills, no satisfaction, no relationship—ours would end. And so I have had to take on the relational task of having my best friend and the only sexual partner I want, and have ever had, be just my best friend. What to do? I feel like the answer is one that I can’t joke about, even though I find that laughing is probably the best way to handle the condition I have, we have, and the cards we have been dealt. So I need to end here and begin again another night when I can focus just on the relational and the amazing power I have found in this new state.
Anyway on to sex. There are two issues—emotional/relational and physical. Let’s talk about physical first. The deal is, Can you get a hard on? Well, sorry, erection. My answer is yes, with difficulty, and nowhere near as hard as before. Let’s talk about that. The basic rule is Use it or lose it. But the physical reality is that those nerves were severed, even though laproscopy, which I had, is more precise than the previous method of the incision from the belly button to just above the penis. The result is that what used to happen, well, more or less with a thought (remember the 5th grade joke? What’s the lightest thing in the world? A cock, because it can be raised with a thought.), doesn’t. Thoughts won’t do it. So the usual fantasies, whatever yours are—you don’t think I’m going to tell you mine, I hope, not on a free blog—won’t do it. I couldn’t/can’t get into much of a ‘state.’ I tried looking at porn, reading some porn, and, while I understood the attraction of certain scenes, even words, and poses, not much happened. By that I mean that I could get to a state emotionally where I wanted to have sex, but no matter how I went about it, the erection was never the, well, rod it used to be. Talk about the spirit willing but the flesh weak.
Now an interesting thing—during this period, from roughly 8 weeks after the operation until about one week after I received the lupron injection, from March till October, though the erection was weak, the orgasm was not. The orgasms were fantastic, among the best I have ever had. They went on for a longer time and the intensity, the way they grabbed me inside, in my chest and head, was more powerful than nearly any I had ever had. I wondered before the first one what it would be like without an ejaculation. I was surprised. It was exactly the same, same buildup, same quivering, same peak, same screaming climax, same feeling of let down and being over. Now the one thing I will reveal. Since these accompanied an erection that was not particularly erect, they took place in my wife’s hand. There was no, well, mess, another surprising thing, and I found I didn’t miss it.
During this period, I was supposed to use two aids to erection—a vacuum pump and one of the erection pills, Viagra or Cialis. The vacuum pump is exactly that, a pump. It has a long tube that fits over the penis and a pump handle on the end. A person, me, lubricates the end of the penis, so it will slide in the tube, and also lubricates the front edge of the tube so that the tube fits against the body with an air tight seal, thus allowing the vacuum to work. The pump creates a vacuum and the vacuum makes the penis extend from its limp state into the cylinder in a semi-erection. The idea is to pump the handle and enlarge the penis, then push a button which releases the pressure, and the penis shrinks back to its original state, then pump again. During each cycle the penis gets longer and more engorged. For me it never got to a consistency that amounted to what I would think of as a ‘usable’ erection. The company supplied some rubber band-type objects that could be applied to the base of the erection, preventing the blood from draining out, and the result could be used in sex. According to the literature that came with the pump, this erection should work, leading to fun and excitement. For me it never did. Frankly I got as far with the porn as with the pump. I still use it but it is boring. Each daily session is 15 minutes, so I drop my pants, turn on a TV, one of the ones that are out of the way, and do the ‘exercise.’ I call it, not very reverently, a vacwhack, but I suppose that merely serves to cover my frustration that it has not worked particularly well for me. I keep at it. The literature, and the sex therapist, say it eventually will work, and that as a result of using it, I will not lose it.
The other strategy is the erection-aid drug. You have no doubt seen those ads of a gray-haired guy, usually with a woman young enough to be his daughter, dancing off the floor to the elevator which they take to an upper, secret floor and a night of wild bashing, lashing and crashing. I doesn’t happen like that, at least not for me. Remember I mentioned headaches? I got them. Over and over I would take one of these pills—note that they don’t make you horny, they only get you an erection; you have to make yourself horny, though what guy my age wouldn’t be so at the thought of a sweet young thing not only choosing him, but expecting that she could get physically from him what she couldn’t get from some 25-year old? Ah, well, what bull. The headaches. The next day after taking one of these my head would pound, and pound. Just like the bad old days, it felt like a nail driven through my right eye into my brain. I spent a number of next days dragging through the rituals of the day. And to combat the headache effect, I began to drink a lot of water, 4 liters a day. That helps some, I have to admit, but of course if you drink that much you pee that much. So then I was like the guys in the ad who kept missing the big event (and being not so much laughed at as tsked) because I was constantly running off to the bathroom.
These pills come in various sizes, 40, 20, 10, and 2.5. I kept lowering my size intake, hoping to get to the therapist’s recommended intake of three times a week. I couldn’t. No way could I do that and go to work or have any kind of day on the days after I took the pills. I have to admit there was a certain licentious thrill to taking them at first. I was one of those guys who could chemically overcome the body and perform for my woman, satisfying her just like I did 40 years ago. No doubt there are many men who have very satisfying experiences with these drugs. I didn’t. As I said I got as far with the porn and that was not all that far. I will keep at this of course, but the failure of it to work has led to some other emotional realizations.
I suppose that the medication that bounced me into another realm was lupron, an estrogen. Lupron reduces testosterone on which prostate cancer feeds. Less testosterone, less cancer. It is admisnistered in a shot (in the butt) that lasts for four months. I got the shot. It worked. My psa was cut by more than half. The upshot though is a total loss of libido. I mean total. I have to admit; I have seen many sexy women and pictures of sexy women. It used to be that I would look and think ‘nice.’ My wife and I had a kind of dance, you know what I mean, that could go on for two days, extended foreplay, thrilling, fun, compelling, satisfactory beyond belief, never boring, never something to take or leave. Now I don’t notice, hardly look, and never think ‘nice.’ At most I look and think, I used to think nice, now I just look. In other words I exist in the world sexlessly. There is no desire and no action. I had to learn that I had to still fondle and kiss and touch and caress and make jokes. I did, and I feel good about that.
So let’s go on to the emotional/relational side of this. I have already done quite a bit of explanation of the emotional. In the early months the emotional desire was there and could be acted upon. We could do the dance and hop into bed and, though the mechanics were a bit different, have a satisfactory, thrilling event. (Sorry, in spite of saying earlier that I would be candid, I can’t. A) it really isn’t your business and B) use your imagination.) But the point is that the physical and emotional changed, but remained at least similar to previous.
With the lupron that is over. No hopping into bed, no thrilling, and, in that sense, no satisfactory. If that were the basis of our marriage—no thrills, no satisfaction, no relationship—ours would end. And so I have had to take on the relational task of having my best friend and the only sexual partner I want, and have ever had, be just my best friend. What to do? I feel like the answer is one that I can’t joke about, even though I find that laughing is probably the best way to handle the condition I have, we have, and the cards we have been dealt. So I need to end here and begin again another night when I can focus just on the relational and the amazing power I have found in this new state.
Monday, December 8, 2008
Sex and Prostate cancer, part 1
November 30, 2008
IT is time to talk about sex and prostate cancer. Just so you know, there is no way to do this without being graphic, at least in my opinion. So if this is a concern to you, all you need to know is this. Erections are difficult to achieve, orgasm is possible, ejaculation after surgery is not possible. Lupron, an estrogen, dramatically reduces your libido.
To help you understand what I will eventually discuss, you need to know that in my 30s I got terrible migraines, all on the right side of my head, often so strong that I was in bed for three days. They went on for years until I had my teeth straightened when they basically ended. I don’t know if that is a cause/effect relationship. They were so disabling that then, and now, I would/will do about anything to avoid them. Since my surgery I have had them again, though no where near as serious, and that fact colors the story I am about to tell.
When I was talking to doctors and a sex therapist prior to my surgery, I discovered anatomical facts that I never knew. The three experiences of erection, ejaculation and orgasm are independent. Erections are caused by nerves along and throughout the penis region. They get cut during the surgery. As a result it is harder to get an erection after the surgery. The nerves can be retrained but as you will see it is a laborious project. Ejaculation is caused by sperm moving up from the testicles and moving out the penis mixed with the fluid that the prostate produces. Not only is the prostate gone, so is the connection of the testicles to the penis (by means of the vas deferens). Orgasm is caused by stimulation; it is a whole body experience (or so I have learned). Orgasm without ejaculation is as pleasant as it is with ejaculation. I will try to check my facts. So separate are these three that the sex therapist told me that it would be possible to have an orgasm as you rolled out of prostatectomy surgery. Brr. The general outline of what I say here is true; I am not entirely clear on the anatomy.
One more fact for you. The prostate surrounds the urethra. It is in between the bladder and the penis. The prostate is about an inch in diameter. After it is removed, there is a one-inch break in the urethra. The urologist sews the two loose ends together, rejoining the urethra into a workable tube for your urine. That inch has to come from somewhere. There is only one place. The bladder doesn’t move. Your penis is shorter. If and when you achieve an erection it is not as long as it was. If the size of your ‘manliness’ is an issue, it is one that you have to face when you decide to have surgery.
For the first weeks after surgery the mantra is first get healed, then get dry, then get hard. The healing for me was uneventful. The catheter was in for 10 days—I can’t remember now if I have its removal and use covered in other parts of this blog. It was hard to sit on a hard seat because that plastic thing was sticking up past the incision, but otherwise I quickly adjusted. You carry the bag for pee around. They have two sizes, a small one to put under your pants if you go out and a large one for night use. I used the large one all the time. I didn’t go out. It wasn’t pretty and I covered it if I had visitors but otherwise I just hauled it around. The incontinence for me was also uneventful. Not everyone’s is and I am thankful for that. I did the Kegel exercises, squeezing my rectum and penis muscles to get control. I wore depends—usually two a day—for about 6 weeks (I think).
During the time I was incontinent I only lost control once, and that was at night in bed. Amazingly since the operation I have had any number of dreams where I had to go to the bathroom, or was in the dream actually peeing, only to wake to realize I needed to go, but I have never wet the bed since. And now as I approach a year since the surgery I have incontinence drips sometimes during a sneeze or if I sit or bend wrong, but not enough to worry about.
Sex is another matter.
IT is time to talk about sex and prostate cancer. Just so you know, there is no way to do this without being graphic, at least in my opinion. So if this is a concern to you, all you need to know is this. Erections are difficult to achieve, orgasm is possible, ejaculation after surgery is not possible. Lupron, an estrogen, dramatically reduces your libido.
To help you understand what I will eventually discuss, you need to know that in my 30s I got terrible migraines, all on the right side of my head, often so strong that I was in bed for three days. They went on for years until I had my teeth straightened when they basically ended. I don’t know if that is a cause/effect relationship. They were so disabling that then, and now, I would/will do about anything to avoid them. Since my surgery I have had them again, though no where near as serious, and that fact colors the story I am about to tell.
When I was talking to doctors and a sex therapist prior to my surgery, I discovered anatomical facts that I never knew. The three experiences of erection, ejaculation and orgasm are independent. Erections are caused by nerves along and throughout the penis region. They get cut during the surgery. As a result it is harder to get an erection after the surgery. The nerves can be retrained but as you will see it is a laborious project. Ejaculation is caused by sperm moving up from the testicles and moving out the penis mixed with the fluid that the prostate produces. Not only is the prostate gone, so is the connection of the testicles to the penis (by means of the vas deferens). Orgasm is caused by stimulation; it is a whole body experience (or so I have learned). Orgasm without ejaculation is as pleasant as it is with ejaculation. I will try to check my facts. So separate are these three that the sex therapist told me that it would be possible to have an orgasm as you rolled out of prostatectomy surgery. Brr. The general outline of what I say here is true; I am not entirely clear on the anatomy.
One more fact for you. The prostate surrounds the urethra. It is in between the bladder and the penis. The prostate is about an inch in diameter. After it is removed, there is a one-inch break in the urethra. The urologist sews the two loose ends together, rejoining the urethra into a workable tube for your urine. That inch has to come from somewhere. There is only one place. The bladder doesn’t move. Your penis is shorter. If and when you achieve an erection it is not as long as it was. If the size of your ‘manliness’ is an issue, it is one that you have to face when you decide to have surgery.
For the first weeks after surgery the mantra is first get healed, then get dry, then get hard. The healing for me was uneventful. The catheter was in for 10 days—I can’t remember now if I have its removal and use covered in other parts of this blog. It was hard to sit on a hard seat because that plastic thing was sticking up past the incision, but otherwise I quickly adjusted. You carry the bag for pee around. They have two sizes, a small one to put under your pants if you go out and a large one for night use. I used the large one all the time. I didn’t go out. It wasn’t pretty and I covered it if I had visitors but otherwise I just hauled it around. The incontinence for me was also uneventful. Not everyone’s is and I am thankful for that. I did the Kegel exercises, squeezing my rectum and penis muscles to get control. I wore depends—usually two a day—for about 6 weeks (I think).
During the time I was incontinent I only lost control once, and that was at night in bed. Amazingly since the operation I have had any number of dreams where I had to go to the bathroom, or was in the dream actually peeing, only to wake to realize I needed to go, but I have never wet the bed since. And now as I approach a year since the surgery I have incontinence drips sometimes during a sneeze or if I sit or bend wrong, but not enough to worry about.
Sex is another matter.
Sunday, November 30, 2008
Placing Gold markers and getting tattooed
CT Scan and Gold Markers: the start of the radiation process
Hi, today I had the CT scan that is needed to set up my radiation plan. It was easy; all I did was lie there. The treatment starts after Thanksgiving and will last for 35- to 45 sessions. More on this later.
First, I will catch you up on the latest in my treatment. I had a PSA at the beginning of November. It was officially ‘undectable,’ which means that it was below .10. In June it was .17 and in September it was .23 (before my surgery it was over 5). The rise is what triggered the current radiation treatment. In September I was injected with lupron, an estrogen, which combats prostate cancer. The lupron is working.
To arrive at today’s session, however, I had to have two gold markers “placed.” This next paragraph is a bit graphic, so you might want to skim it. In order to place them, I had to go through a regimen. On the morning of the placement—November 5, thankfully for what happened that morning I was still elated from the election--I had to finish eating by 9, take no food or liquid after that, and give myself a Fleet enema, which according to the package, causes a “bowel release,” in 1 to 5 minutes. The bottle has a long tip, which is lubricated. The releasee kneels on the floor, rather like child pose in pilates, and inserts and squeezes. The bottle empties into the bowel and the releasee heads for the toilet, magazine in hand. And the package was accurate. In about 1 minute came the first release and within 5 came two more. And so I was evacuated. Not knowing what the car ride in might be like I took along a second pair of pants and two Depends, left over from the incontinence period in January/February. I never needed them for accident management, but did need them later as you will see.
I have to point out that even though the night before was full of suspense and then great joy and then admiration for John McCain for making a gracious speech and finally for the Obamas who will be so fun to have in the White House, I was focused on myself. I realized that the next day I started on the cancer journey. Phase I had not worked. It wasn’t gone. Phase II is a sobering thing to begin. While I expect this to be Phase End, there is no guarantee of that. I slept well, but that chill is back there, waiting, like an arctic high stalled in Canada.
Anyhow, after the evacuation we left for Metro Urology in Woodbury to see Dr. Serson who would do the placing. (Well this paragraph is going to be even more graphic, and it has needles, so proceed at your own chosen speed. You can just skip to OK below.) After a brief stay in the waiting room, I was ushered into a room that had large chair that could unfold into a sofa-like arrangement. The nurse told me that they would be placing the gold markers. She had four out, though she was not sure how many he would actually insert. She asked me to remove my pants and underpants and put on one of those hospital gowns. She left. I did. There I stood feeling a bit silly as one does when your butt is hanging out; perhaps that is where those dreams of teaching naked from the waist down come from (“surely no one is noticing”). She asked me to sit down. The doctor came in. He told me as I sat there that he would move the chair back so that I was lying sideways and he would place two markers. I felt a relief—just two. Then he told me that this was done without anesthesia. He suggested I hold onto the edge of the chair. The placement began. A very large long object, thoroughly lubricated, slid up my rectum. He apologized. Actually, he apologized repeatedly throughout the procedure. One function of the object was to activate an ultrasound of my prostate bed. He had to place the markers on either side of the stitching where he sewed together the urethra after he removed the prostate. He talked through the entire procedure. First the lower one. Then he apologized again. This would hurt. The other function of the object was to unleash the needle that penetrated the rectum wall and other tissue to get the gold over to the appropriate spot. It went well. He could see it. He got it exactly where he wanted it. I felt every millimeter of progress, and held on tight. Then he did the other one, once again talking. Oops. Through scar tissue, which is thicker. You know, I could tell it was thicker. Eyes watering at this point. All of a sudden he asks, Where is it? He couldn’t see it. The only thing I could imagine was that he would have to do this again. I held tighter. Then Oh, there it is! Just where I want it. The needle retracted. The Object slid out. The procedure was finished in less than five minutes. I realized that I would never last at Gitmo—I would talk. But actually I had a root canal in 1973 and my recollection is that that was worse.
OK. No more needles. The nurse left. We sat there and talked about Gleason 9, which is categorized as High Risk. I asked what that meant. He told me that it meant that there was a high possibility of it recurring, which it has. So I asked, again, the fearful cancer question Was I on a timeline? He answered without hesitation. No. He is confident of controlling this. We chatted a bit more but I remember very little of it. He left. I went to put on my clothes, only to discover, surprise, that I was bleeding. I called Mary. She went to the car and brought me the Depends. I wore them the rest of the day and all the next. The bleeding never returned. We left about noon, drove to St. Paul, found University Avenue, stopped at the Russian Tea House, and had a fine meal of piroshkis, soup, and tea. That afternoon I went back to work.
This morning was much less traumatic. I had the same regimen. Eat early. No liquids or food after 7:30. The Fleet enema. The ride in. The only difference is that we stopped at 9:45 so that I could “void” at the rest stop just inside the Minnesota border. I had to empty my bladder 45 minutes before the scan. Fifteen minutes later I drank 16 ounces of water. The idea is that the bladder should be full so that it is out of the way during the actual radiation bursts.
In Maplewood at MOHPA we checked in; after just a few minutes I was called back for the scan. Once again I removed clothing and donned a hospital gown. Then began a really interesting procedure. I had to lie down on a cloth-covered wooden board that extended into a machine that looked like a giant doughnut. The wood was to ensure that my body would be in the same position the next and every time. My feet and calves were laid on some kind of plastic that was wrapped around, then hardened. This cast would be used every time to hold me in the exact spot. Up came the hospital gown. They made three marks on me—right, left hips and lower stomach. It turns out, if I understand this correctly, that these marks were the points that the three laser beams in the room, one on each wall, one in the ceiling, hit me. Think of the jewel robbery in The Shot in the Dark. They also used the ceiling beam to precisely line me up with the center line of the board, and thus of the machine. The beam hit my breast bone and the two attendants pushed and pulled me until I was in the right position. The doctor entered, and pushed something against my penis and that something ejected a stream of liquid up my urethra so that it would show up precisely in the images, and they would know where to not aim, and thus not microwave this important part of me. After that handling, I received an injection of what was called a ‘contast.’ This liquid, within 30 seconds, entered my entire blood stream, causing the images to show everyone of them. When all was set, I entered the machine. It whirred and took a number of images, which will be used to precisely aim the radiation beam. After the scan was over, they slid me out of the doughnut, and then tattooed three points on me. Those tattooed points and the gold markers will align the radiation machine, precisely directing the beam. Even though I asked, and they explained, I am not sure why they had to use the markers and then the tattoos. I hope to clear this up later.
After I dressed, Mary and I waited in an exam room to discuss the scan with the doctor. While we waited, a nurse entered and talked a bit about radiation. She assured me that I would not be radioactive. I could hold babies, sleep in the same bed as my wife, and hug pregnant women, none of which it had ever occurred to me to worry about. The doctor entered and we went over the radiation schedule. He thought I would need about 35 times, but they schedule 45 just in case. He explained the system which is that I come in, enter my name in a computer at the front desk, and when called enter the radiation room for the 10-15 minute treatment. On Wednesdays we would talk, just to keep in touch, though I will see what actually happens during those sessions. I could drink alcohol, I might get a sore rectum, if I lose my appetite and thus weight, I should eat ‘all the food we tell you not to eat because it is bad for you’—I remembered Simon wanting to eat junk food on the days after his chemo sessions, I might become exhausted, but might not.
Then I asked a question that had an interesting answer. Several times during the morning he or one of the nurses/attendants had referred to how they used to do it in the Old Days. I asked how long ago were those old days. The answer—6 years. It turns out that up to 6 years ago they used a technology called 3D something. I will get the exact name. That technology replaced a different one 15 years ago. Some places still use 3D. MOHPA was the second place in Minnesota to switch to IMRT, which according to Dr. McGuire, is the latest and current best. This technology allows them to send various dosages of radiation into me, lower dosages for the ‘good’ structures in me and higher for the ‘bad.’ Furthermore the amount that the radiation machine emits and the point on my body where it emits that level is computer controlled. Computerization allows the doctor and his team to run 2000 variations of dosages and locations in order to obtain the optimal combination. In the old days, they might do three. In the old days there was a lot of guess work. With this technology, there is considerably less; they shape the beam for my anatomy and my diseased spots.
One last thing about my diseased spots. I have what is called microscopic, as opposed to gross, infection (or whatever the correct word is). This technology allows them to deal with these tiny areas. To explain all this he sits with one hand on an examining bench covered with paper, the kind on a roll that you pull off and through away after the patient lies on it. The whole time he draws anatomy. It is amazing to watch.
My job when the treatments begin will be to drink the same amount of water at the same relative time to get my bladder to the same fullness, hence position, thus allowing the innards to assume the same relative position allowing the beam to hit the same spot. I assume that they have some margin of error built into this procedure since what I just outlined is clearly impossible at the microscopic level.
We finally left him to talk to the scheduler. Everyone wants to begin after Thanksgiving. Their schedule is very full. They will call me. We walked out to the car, drove into St. Paul, had lunch at Café latte, stopped to buy shoes at Shuler’s in Woodbury, arrived in Menomonie about three. Mary went to her Spanish class. I went to work, had a wonderful meeting with my Engagement Project group, and came home.
And so my journey begins. I have said before that I am neither worried nor afraid, but I feel that I need to add a bit to that. I can be flip, and have been. Cancer is an awful thing and now my life and my family’s is marked by how long I survive. I want to say, though, that my cancer does not have, at least at this point, the awful finality that many people’s does. People comment on my attitude, and I thank them for it. But I am very aware that my attitude is nothing compared to the one that many people must have. My worry, in a sense, is untested. For others that is not the case. Those people know the meaning of worry and fear and what it takes to counter them in ways that I do not. I hope that my detailing my plight can remove some of the fear of the word cancer; I even hope I can get you to smile sometimes. Cancer, curiously, brings a certain kind of gift—of love, awareness, and inner strength. I am thankful for those, but I would never want anyone to think that I am making fun of the disease or its often sudden and terminal consequences.
For all that I can report one more emotion. Today as I left that clinic, I felt, as I did after the placing several weeks ago, elated. I noticed the light on the buildings, the people on the sidewalk, the taste of the food, even the feel of the typewriter keys. The pleasantness of the meeting at 4:30 was so comfortable. As I say, strange gifts.
--November 17. 2009
Hi, today I had the CT scan that is needed to set up my radiation plan. It was easy; all I did was lie there. The treatment starts after Thanksgiving and will last for 35- to 45 sessions. More on this later.
First, I will catch you up on the latest in my treatment. I had a PSA at the beginning of November. It was officially ‘undectable,’ which means that it was below .10. In June it was .17 and in September it was .23 (before my surgery it was over 5). The rise is what triggered the current radiation treatment. In September I was injected with lupron, an estrogen, which combats prostate cancer. The lupron is working.
To arrive at today’s session, however, I had to have two gold markers “placed.” This next paragraph is a bit graphic, so you might want to skim it. In order to place them, I had to go through a regimen. On the morning of the placement—November 5, thankfully for what happened that morning I was still elated from the election--I had to finish eating by 9, take no food or liquid after that, and give myself a Fleet enema, which according to the package, causes a “bowel release,” in 1 to 5 minutes. The bottle has a long tip, which is lubricated. The releasee kneels on the floor, rather like child pose in pilates, and inserts and squeezes. The bottle empties into the bowel and the releasee heads for the toilet, magazine in hand. And the package was accurate. In about 1 minute came the first release and within 5 came two more. And so I was evacuated. Not knowing what the car ride in might be like I took along a second pair of pants and two Depends, left over from the incontinence period in January/February. I never needed them for accident management, but did need them later as you will see.
I have to point out that even though the night before was full of suspense and then great joy and then admiration for John McCain for making a gracious speech and finally for the Obamas who will be so fun to have in the White House, I was focused on myself. I realized that the next day I started on the cancer journey. Phase I had not worked. It wasn’t gone. Phase II is a sobering thing to begin. While I expect this to be Phase End, there is no guarantee of that. I slept well, but that chill is back there, waiting, like an arctic high stalled in Canada.
Anyhow, after the evacuation we left for Metro Urology in Woodbury to see Dr. Serson who would do the placing. (Well this paragraph is going to be even more graphic, and it has needles, so proceed at your own chosen speed. You can just skip to OK below.) After a brief stay in the waiting room, I was ushered into a room that had large chair that could unfold into a sofa-like arrangement. The nurse told me that they would be placing the gold markers. She had four out, though she was not sure how many he would actually insert. She asked me to remove my pants and underpants and put on one of those hospital gowns. She left. I did. There I stood feeling a bit silly as one does when your butt is hanging out; perhaps that is where those dreams of teaching naked from the waist down come from (“surely no one is noticing”). She asked me to sit down. The doctor came in. He told me as I sat there that he would move the chair back so that I was lying sideways and he would place two markers. I felt a relief—just two. Then he told me that this was done without anesthesia. He suggested I hold onto the edge of the chair. The placement began. A very large long object, thoroughly lubricated, slid up my rectum. He apologized. Actually, he apologized repeatedly throughout the procedure. One function of the object was to activate an ultrasound of my prostate bed. He had to place the markers on either side of the stitching where he sewed together the urethra after he removed the prostate. He talked through the entire procedure. First the lower one. Then he apologized again. This would hurt. The other function of the object was to unleash the needle that penetrated the rectum wall and other tissue to get the gold over to the appropriate spot. It went well. He could see it. He got it exactly where he wanted it. I felt every millimeter of progress, and held on tight. Then he did the other one, once again talking. Oops. Through scar tissue, which is thicker. You know, I could tell it was thicker. Eyes watering at this point. All of a sudden he asks, Where is it? He couldn’t see it. The only thing I could imagine was that he would have to do this again. I held tighter. Then Oh, there it is! Just where I want it. The needle retracted. The Object slid out. The procedure was finished in less than five minutes. I realized that I would never last at Gitmo—I would talk. But actually I had a root canal in 1973 and my recollection is that that was worse.
OK. No more needles. The nurse left. We sat there and talked about Gleason 9, which is categorized as High Risk. I asked what that meant. He told me that it meant that there was a high possibility of it recurring, which it has. So I asked, again, the fearful cancer question Was I on a timeline? He answered without hesitation. No. He is confident of controlling this. We chatted a bit more but I remember very little of it. He left. I went to put on my clothes, only to discover, surprise, that I was bleeding. I called Mary. She went to the car and brought me the Depends. I wore them the rest of the day and all the next. The bleeding never returned. We left about noon, drove to St. Paul, found University Avenue, stopped at the Russian Tea House, and had a fine meal of piroshkis, soup, and tea. That afternoon I went back to work.
This morning was much less traumatic. I had the same regimen. Eat early. No liquids or food after 7:30. The Fleet enema. The ride in. The only difference is that we stopped at 9:45 so that I could “void” at the rest stop just inside the Minnesota border. I had to empty my bladder 45 minutes before the scan. Fifteen minutes later I drank 16 ounces of water. The idea is that the bladder should be full so that it is out of the way during the actual radiation bursts.
In Maplewood at MOHPA we checked in; after just a few minutes I was called back for the scan. Once again I removed clothing and donned a hospital gown. Then began a really interesting procedure. I had to lie down on a cloth-covered wooden board that extended into a machine that looked like a giant doughnut. The wood was to ensure that my body would be in the same position the next and every time. My feet and calves were laid on some kind of plastic that was wrapped around, then hardened. This cast would be used every time to hold me in the exact spot. Up came the hospital gown. They made three marks on me—right, left hips and lower stomach. It turns out, if I understand this correctly, that these marks were the points that the three laser beams in the room, one on each wall, one in the ceiling, hit me. Think of the jewel robbery in The Shot in the Dark. They also used the ceiling beam to precisely line me up with the center line of the board, and thus of the machine. The beam hit my breast bone and the two attendants pushed and pulled me until I was in the right position. The doctor entered, and pushed something against my penis and that something ejected a stream of liquid up my urethra so that it would show up precisely in the images, and they would know where to not aim, and thus not microwave this important part of me. After that handling, I received an injection of what was called a ‘contast.’ This liquid, within 30 seconds, entered my entire blood stream, causing the images to show everyone of them. When all was set, I entered the machine. It whirred and took a number of images, which will be used to precisely aim the radiation beam. After the scan was over, they slid me out of the doughnut, and then tattooed three points on me. Those tattooed points and the gold markers will align the radiation machine, precisely directing the beam. Even though I asked, and they explained, I am not sure why they had to use the markers and then the tattoos. I hope to clear this up later.
After I dressed, Mary and I waited in an exam room to discuss the scan with the doctor. While we waited, a nurse entered and talked a bit about radiation. She assured me that I would not be radioactive. I could hold babies, sleep in the same bed as my wife, and hug pregnant women, none of which it had ever occurred to me to worry about. The doctor entered and we went over the radiation schedule. He thought I would need about 35 times, but they schedule 45 just in case. He explained the system which is that I come in, enter my name in a computer at the front desk, and when called enter the radiation room for the 10-15 minute treatment. On Wednesdays we would talk, just to keep in touch, though I will see what actually happens during those sessions. I could drink alcohol, I might get a sore rectum, if I lose my appetite and thus weight, I should eat ‘all the food we tell you not to eat because it is bad for you’—I remembered Simon wanting to eat junk food on the days after his chemo sessions, I might become exhausted, but might not.
Then I asked a question that had an interesting answer. Several times during the morning he or one of the nurses/attendants had referred to how they used to do it in the Old Days. I asked how long ago were those old days. The answer—6 years. It turns out that up to 6 years ago they used a technology called 3D something. I will get the exact name. That technology replaced a different one 15 years ago. Some places still use 3D. MOHPA was the second place in Minnesota to switch to IMRT, which according to Dr. McGuire, is the latest and current best. This technology allows them to send various dosages of radiation into me, lower dosages for the ‘good’ structures in me and higher for the ‘bad.’ Furthermore the amount that the radiation machine emits and the point on my body where it emits that level is computer controlled. Computerization allows the doctor and his team to run 2000 variations of dosages and locations in order to obtain the optimal combination. In the old days, they might do three. In the old days there was a lot of guess work. With this technology, there is considerably less; they shape the beam for my anatomy and my diseased spots.
One last thing about my diseased spots. I have what is called microscopic, as opposed to gross, infection (or whatever the correct word is). This technology allows them to deal with these tiny areas. To explain all this he sits with one hand on an examining bench covered with paper, the kind on a roll that you pull off and through away after the patient lies on it. The whole time he draws anatomy. It is amazing to watch.
My job when the treatments begin will be to drink the same amount of water at the same relative time to get my bladder to the same fullness, hence position, thus allowing the innards to assume the same relative position allowing the beam to hit the same spot. I assume that they have some margin of error built into this procedure since what I just outlined is clearly impossible at the microscopic level.
We finally left him to talk to the scheduler. Everyone wants to begin after Thanksgiving. Their schedule is very full. They will call me. We walked out to the car, drove into St. Paul, had lunch at Café latte, stopped to buy shoes at Shuler’s in Woodbury, arrived in Menomonie about three. Mary went to her Spanish class. I went to work, had a wonderful meeting with my Engagement Project group, and came home.
And so my journey begins. I have said before that I am neither worried nor afraid, but I feel that I need to add a bit to that. I can be flip, and have been. Cancer is an awful thing and now my life and my family’s is marked by how long I survive. I want to say, though, that my cancer does not have, at least at this point, the awful finality that many people’s does. People comment on my attitude, and I thank them for it. But I am very aware that my attitude is nothing compared to the one that many people must have. My worry, in a sense, is untested. For others that is not the case. Those people know the meaning of worry and fear and what it takes to counter them in ways that I do not. I hope that my detailing my plight can remove some of the fear of the word cancer; I even hope I can get you to smile sometimes. Cancer, curiously, brings a certain kind of gift—of love, awareness, and inner strength. I am thankful for those, but I would never want anyone to think that I am making fun of the disease or its often sudden and terminal consequences.
For all that I can report one more emotion. Today as I left that clinic, I felt, as I did after the placing several weeks ago, elated. I noticed the light on the buildings, the people on the sidewalk, the taste of the food, even the feel of the typewriter keys. The pleasantness of the meeting at 4:30 was so comfortable. As I say, strange gifts.
--November 17. 2009
Follow up to the scans, and the start of radiology planning
Thursday, the next week.
The trip to find the results was easy. We had to be in Maplewood at 9:30. About 8 we left, me driving. I wanted to drive. Down the hill, across Wilson Creek, left at the library, north to 94 and off to Maplewood. We decided to try a new route, to take 61 north from 94 because 61 ran right past the clinic. Good thing we had extra time. Highway 61 turns south off 94, but we had to wind all through east St. Paul, till we found Arcade street which is also 61 north. This route is more interesting than 694 to White Bear and south to MOHPA (Minnesota Oncology and Hematology, PA) but longer.
The car parked, we walked in to find it was patient appreciation day. We each got a MOHPA water bottle, I had a lemon muffin, and entered their drawing, all while we waited to be called in.
I give you all these details because they are what I occupied myself with all the night before and in the morning while I lay awake, during the shower and on the drive. What can I say? Why do they take a bone scan? Because the damn stuff could be Everywhere. What is the prostascint looking for? Not just the spot near in the prostate bed, but the stuff in lymph nodes, bladder, testicles, and I suppose pancreas, liver, lungs. While I am not sure it was just swagger on my part, I have repeatedly looked into my soul and found that I am not afraid. But still. I walked in there wondering in the back of my mind whether I would be told to enjoy this Christmas because I wouldn’t be here next. I had done my best to prepare myself for that and for telling other people, whose obvious suffering at this bad news is both heartening and a bit guilty-causing—I am sorry to bring such distress into anyone’s life. Mary? Zoe? The kids? I don’t know what it is like to be told that. I thought about it, realized that it at least had the benefit of being definite, and then believed I could take the blow. After that set of thoughts, though, I deliberately turned away. In this extended slow motion sequence I refuse to dwell on all the what if’s. I could dwell on the life span of gleason 9 patients. I could dwell on the effectiveness of various therapies, and the correctness of what has already been done to me. I could start in on ‘this is the last…’ whatever. No good. If this kind of disease does nothing else, it convinces you quickly to live in Now. Watch the sunlight on the sumac on the way to work. Notice the dimples in Mary’s smile. Get on with today and with implementing dreams.
So we sat there. Someone called my name. We got up and followed her. At weigh-in I was 205. We went into the room, reviewed my medications and birthdate. She left. We waited for Warren. In he came, a big fellow, with gray hair, and an amiable smile. He has bedside manner down. He was carrying two envelopes. The results. My future. After a few pleasantries he opened the first, the bone scan. They are basically x-rays, so he inserted them into one of those wall light screens and told me to look. I have arthritis in a number of places, all of which showed on the scan—neck, shoulders, knees, spine. But no bone cancer. He took them down, put them back in the envelope and gave them to me. I guess I will show them to Mark to see how to follow up on them. One down.
Next was the prostascint scan. These are more like photos so the screen was not much help. He explained that a brown smudge—love those technical words for the results of a million dollar machine—was cancer. The word he used was ‘uptake.’ He was looking for uptake. He pointed out two. One was in the prostrate bed and the other in the bladder. He did it with the same professional calm that an English teacher points out a comma splice. He had me look. I saw them. Where would this go? No others. We scoured the pictures like you might scour a map looking for a small town name or a street name. Nothing but those two spots.
So we sat down and he started in to discuss lupron. He asked me if I knew the side effects. I said that I had asked my niece to come watch chick flicks with me so we could cry together. I guess that caught him off guard. So I suggested that he might like to explain other effects. The key one is hot flashes. Also some weight gain and an even further loss of libido (he just said loss but I added the even further—no prostate cuts down on this side of life a bit—we can talk about that too if you like. Call me. I might get it into one of these reports, but not now. I will say that libido is not eliminated and in its own new way sort of fun).
The discussion turned to radiation and the time schedule. Surprise, there are two planning sessions in November. One is a CT scan, again, to precisely locate the cancer and mark my body so the radiation gun targets it exactly. The other, nice, is that I need to have some gold markers “placed” in the area. How is that done? I inquired naively. Same way the biopsy is done, through the anus. Beautiful. Sershon does it. McGuire’s people will talk to Sershon’s people who will talk to my people (Mary) and I will show up for the ‘placement.’ The radiation could start at the end off November. It seemed apparent that I needed to OK all this so I said let’s do it. And that started the process. I could have the lupron shot there today and I agreed to that.
Then we got to the questions. Since I felt that one elephant was munching contentedly in the room, I thought it best to ask—what about the bladder? I was amazed at how calm I was as I asked that question. Nothing. The brown always shows up there. No cancer there. I was amazed again that I didn’t get light-headed and faint. We worked through some other questions, including the name of the man who read my first biopsy. I really want to understand how the two biopsies could be so different. I don’t expect to get confrontational about it, but the difference appears to be a major hole in the system.
While we were questioning I asked if this treatment plan would get me out of jury duty. He said yes, if it was during the radiation or if I got hot flashes so extreme that I had trouble concentrating. We traded jury stories. He had been on a silly one. I had been on a sexual assault one where we let the guy off due to it not being proved beyond a reasonable doubt. That led to a brief discussion of use of CSI techniques in small town trials, and he took a shot that was pretty interesting. He suggested that in at least one small town in Alaska the woman was required to pay for the dna test if she wanted one in the trial. I am not sure that that is true, but there he was. A democrat. We told the story of being at breakfast at a bed and breakfast in St. Johns New Brunswick. We were the only Americans of about 10 people in the small room. The proprietor loved to get things going so he sidled over to our table and told us that last week he had had a republican there but he kicked him out. I guess Mary and I wear our politics on our sleeves. An aside—the proprietor then got after the Russian who was travelling around Canada. What did he think of the U.S. and Bush? The Russian said that they all loved him because Bush had gotten the dollar devalued, and the ruble consequently went up, and now Russians could afford to travel around the world.
That laugh over, the doctor left and we never saw him again. Another nurse came in, told us she would administer the shot. We talked a bit. I love the customer attention, the sense that they want us to know that people are helping you, another person. She was from Hudson. Her kids went to school at a private academy in St. Paul, so no, she didn’t know our friends the Leesons. I decided not to mention politics. She left to get the shot. About 15 minutes later she returned to tell us that the delay was because they had to get the ok from Eau Claire Group Health. After that permission came, she came in with the shot, my third one in this process, all from needles and vials about the same size. I asked what the shot cost. She called the pharmacist. Six hundred dollars. I leaned over the examining bench, pulled my pants down to about half way down the cheeks. She slipped the top of my Travel Smiths down about two inches and injected me on the top curve of the right cheek. That was it.
She led us to the scheduler. We set up the general time frame, did the ‘people’ thing, and off we went, out past the patient appreciation displays, through the doors, across the lot to the car. Mary drove. That was fine with me. I was more wiped out than I thought I would be. She confessed that her heart had dropped at the casual mention of the bladder also. That strange feeling of love that unites two people into one came to me. Maybe this is what angels are. We turned onto Beam, onto White Bear, onto 694, and headed into the even clearer now.
The trip to find the results was easy. We had to be in Maplewood at 9:30. About 8 we left, me driving. I wanted to drive. Down the hill, across Wilson Creek, left at the library, north to 94 and off to Maplewood. We decided to try a new route, to take 61 north from 94 because 61 ran right past the clinic. Good thing we had extra time. Highway 61 turns south off 94, but we had to wind all through east St. Paul, till we found Arcade street which is also 61 north. This route is more interesting than 694 to White Bear and south to MOHPA (Minnesota Oncology and Hematology, PA) but longer.
The car parked, we walked in to find it was patient appreciation day. We each got a MOHPA water bottle, I had a lemon muffin, and entered their drawing, all while we waited to be called in.
I give you all these details because they are what I occupied myself with all the night before and in the morning while I lay awake, during the shower and on the drive. What can I say? Why do they take a bone scan? Because the damn stuff could be Everywhere. What is the prostascint looking for? Not just the spot near in the prostate bed, but the stuff in lymph nodes, bladder, testicles, and I suppose pancreas, liver, lungs. While I am not sure it was just swagger on my part, I have repeatedly looked into my soul and found that I am not afraid. But still. I walked in there wondering in the back of my mind whether I would be told to enjoy this Christmas because I wouldn’t be here next. I had done my best to prepare myself for that and for telling other people, whose obvious suffering at this bad news is both heartening and a bit guilty-causing—I am sorry to bring such distress into anyone’s life. Mary? Zoe? The kids? I don’t know what it is like to be told that. I thought about it, realized that it at least had the benefit of being definite, and then believed I could take the blow. After that set of thoughts, though, I deliberately turned away. In this extended slow motion sequence I refuse to dwell on all the what if’s. I could dwell on the life span of gleason 9 patients. I could dwell on the effectiveness of various therapies, and the correctness of what has already been done to me. I could start in on ‘this is the last…’ whatever. No good. If this kind of disease does nothing else, it convinces you quickly to live in Now. Watch the sunlight on the sumac on the way to work. Notice the dimples in Mary’s smile. Get on with today and with implementing dreams.
So we sat there. Someone called my name. We got up and followed her. At weigh-in I was 205. We went into the room, reviewed my medications and birthdate. She left. We waited for Warren. In he came, a big fellow, with gray hair, and an amiable smile. He has bedside manner down. He was carrying two envelopes. The results. My future. After a few pleasantries he opened the first, the bone scan. They are basically x-rays, so he inserted them into one of those wall light screens and told me to look. I have arthritis in a number of places, all of which showed on the scan—neck, shoulders, knees, spine. But no bone cancer. He took them down, put them back in the envelope and gave them to me. I guess I will show them to Mark to see how to follow up on them. One down.
Next was the prostascint scan. These are more like photos so the screen was not much help. He explained that a brown smudge—love those technical words for the results of a million dollar machine—was cancer. The word he used was ‘uptake.’ He was looking for uptake. He pointed out two. One was in the prostrate bed and the other in the bladder. He did it with the same professional calm that an English teacher points out a comma splice. He had me look. I saw them. Where would this go? No others. We scoured the pictures like you might scour a map looking for a small town name or a street name. Nothing but those two spots.
So we sat down and he started in to discuss lupron. He asked me if I knew the side effects. I said that I had asked my niece to come watch chick flicks with me so we could cry together. I guess that caught him off guard. So I suggested that he might like to explain other effects. The key one is hot flashes. Also some weight gain and an even further loss of libido (he just said loss but I added the even further—no prostate cuts down on this side of life a bit—we can talk about that too if you like. Call me. I might get it into one of these reports, but not now. I will say that libido is not eliminated and in its own new way sort of fun).
The discussion turned to radiation and the time schedule. Surprise, there are two planning sessions in November. One is a CT scan, again, to precisely locate the cancer and mark my body so the radiation gun targets it exactly. The other, nice, is that I need to have some gold markers “placed” in the area. How is that done? I inquired naively. Same way the biopsy is done, through the anus. Beautiful. Sershon does it. McGuire’s people will talk to Sershon’s people who will talk to my people (Mary) and I will show up for the ‘placement.’ The radiation could start at the end off November. It seemed apparent that I needed to OK all this so I said let’s do it. And that started the process. I could have the lupron shot there today and I agreed to that.
Then we got to the questions. Since I felt that one elephant was munching contentedly in the room, I thought it best to ask—what about the bladder? I was amazed at how calm I was as I asked that question. Nothing. The brown always shows up there. No cancer there. I was amazed again that I didn’t get light-headed and faint. We worked through some other questions, including the name of the man who read my first biopsy. I really want to understand how the two biopsies could be so different. I don’t expect to get confrontational about it, but the difference appears to be a major hole in the system.
While we were questioning I asked if this treatment plan would get me out of jury duty. He said yes, if it was during the radiation or if I got hot flashes so extreme that I had trouble concentrating. We traded jury stories. He had been on a silly one. I had been on a sexual assault one where we let the guy off due to it not being proved beyond a reasonable doubt. That led to a brief discussion of use of CSI techniques in small town trials, and he took a shot that was pretty interesting. He suggested that in at least one small town in Alaska the woman was required to pay for the dna test if she wanted one in the trial. I am not sure that that is true, but there he was. A democrat. We told the story of being at breakfast at a bed and breakfast in St. Johns New Brunswick. We were the only Americans of about 10 people in the small room. The proprietor loved to get things going so he sidled over to our table and told us that last week he had had a republican there but he kicked him out. I guess Mary and I wear our politics on our sleeves. An aside—the proprietor then got after the Russian who was travelling around Canada. What did he think of the U.S. and Bush? The Russian said that they all loved him because Bush had gotten the dollar devalued, and the ruble consequently went up, and now Russians could afford to travel around the world.
That laugh over, the doctor left and we never saw him again. Another nurse came in, told us she would administer the shot. We talked a bit. I love the customer attention, the sense that they want us to know that people are helping you, another person. She was from Hudson. Her kids went to school at a private academy in St. Paul, so no, she didn’t know our friends the Leesons. I decided not to mention politics. She left to get the shot. About 15 minutes later she returned to tell us that the delay was because they had to get the ok from Eau Claire Group Health. After that permission came, she came in with the shot, my third one in this process, all from needles and vials about the same size. I asked what the shot cost. She called the pharmacist. Six hundred dollars. I leaned over the examining bench, pulled my pants down to about half way down the cheeks. She slipped the top of my Travel Smiths down about two inches and injected me on the top curve of the right cheek. That was it.
She led us to the scheduler. We set up the general time frame, did the ‘people’ thing, and off we went, out past the patient appreciation displays, through the doors, across the lot to the car. Mary drove. That was fine with me. I was more wiped out than I thought I would be. She confessed that her heart had dropped at the casual mention of the bladder also. That strange feeling of love that unites two people into one came to me. Maybe this is what angels are. We turned onto Beam, onto White Bear, onto 694, and headed into the even clearer now.
Scans to find the recurrent cancer
The story of my two scans
Dan
September 24, 2008
During the past week I have had two tests that determine where the excess cancer is so that they can focus the radiation guns on the stuff to zap it. One test was a bone scan and the other is a prostascint scan. Both scans check the entire body to see if the cancer has spread beyond where they think it probably is; the prostascint creates a 3D picture of the area vacated by the prostate, called the ‘prostate bed,’ a rather ironic term, granted the effects of having your prostate removed.
Both scans use radioactive material, injected into me, more on that later. The basic theory is that prostate cancer cells will unite with the material injected into me. Sorry, I am not sure which particle or atomic element that part of the radium is. After the radioactive material is in the body and has united, the RA shows up on the films that the scanning machines use. Thus the doctors can ‘read’ the film, determine the location of the cancerous cells, and create a plan of therapy. I think I have all this theory phrased correctly, but I, of course, could have it not quite right, though I have the general outline correct. Bone scans are used for all cancers that might not be exactly located and prostascint is used specifically for prostate cancers, if the cancer is determine to be outside the prostate, which they discovered was the case when they performed the surgery.
Thursday. All of this took place at United Hospital, as nice a place (granted the circumstances) that a person could want. What I really mean by that is that someone has informed the culture there with pleasantness. Everyone we met was helpful, if asked, and friendly looking at least as they passed us in the halls. We both felt that we were people being treated, not bodies being worked on.
The Imaging Center is on the first floor and very easy to find. We walked in, registered—a pleasant experience with people who do this so often that they could do it in their sleep but who act like you are the most important thing they have to do right now and attend to it. We got there at 8 am on Thursday. By 8:15 I was getting the first injection, in the NucMed area—Nuclear Medicine, which all of us, including me now that I have been initiated never call by the full phrase. I got the injection in my left arm. Before we started the tech (more inside jargon) Julie asked me if I wanted an IV or just this shot and later the other one. We went around a bit on that. I wanted to know why I would want an IV and the answer is that some people can’t stand two shots thus want the IV so both occur at the same place and they only have to be poked once. Lord. I went with two.
The actual shot was interesting. Well, it was your basic poke, push the plunger down and have me hold cotton over the tiny wound while she applied the tape. The thing was the holder. It was larger—she needed her entire hand to hold it. But it was metal. The needle and tube holding the material sat inside the holder until she pulled it out and performed the act. I asked why the metal. It is a shield against the RA material. It turns out that she wears a monitor that constantly measures the level of radiation either in or near her, not sure which, but if the level were too high, it would sound and she would, I suppose, have to be inspected.
That was it. The injection took about 20 seconds. I got up and Mary and I left. We had a not great breakfast in the hospital cafeteria, read the paper and went for a walk, to return at 11 for the actual scan. United is in an interesting part of downtown St. Paul. We walked up Smith, looking for the Catholic church in the area, Assumption, the oldest church in Minnesota (1874, ordered built by John Ireland). Two distinctive spires front the building. The old wood door with those foot-long door pulls opened easily and we entered a 19th century well-preserved building. Wood backdrops, not sure what the technical word is for them (reredos? Retablo? Altarpiece?), behind St. Joseph’s small altar to the right and Mary’s to the left. The old main altar was way back there with the new altar much closer to the pews. The building is a little like a basilica, with columns down each side of the main pews and aisle and then an aisle and pews between the columns and the walls. Along the walls were the stations, large plaster models. All the statues were plaster, that 19th century romantic view of holy people. We translated the Latin across the wall above the altar, trying to remember nominative, dative, and accusative endings. I don’t remember the exact phrase but it was to the effect that the angels sing the glory and honor of Mary in heaven.
The area itself is also the home of a homeless assistance center, the new Dorothy Day center. The old one is down near the river being subdivided into condos. On the way from the hospital we walked past guy after guy sleeping on cardboard along the grass boulevard and at the center numerous people just sat in the sun. Interestingly we were never panhandled. Sort of a first for me.
We walked toward the river, ended up on the terrace outside the Science Museum, overlooking the river. We watched. Below, a prairie garden, Warner Road, the river, some barges. The information displays on signs spread around the terrace lead you effortlessly into the nature and impact of the river. Time slipped by. We walked back to the hospital.
We got there a bit before 11. The Imagining Center receptionist took us to the waiting area. Julie returned, got me. Mary had to stay in that small room and listen to the TV blare on about McCain and Palin, who were in town that day. She asked to turn it off, but one woman wanted to watch because she watched everything since this was so historic an election.
Bone scans are pretty easy to report on. I took all the metal out of my pockets, took off my glasses, and got onto the bed of the machine. Essentially the machine is a long tube. The actual camera is a flat surface (that’s what I could see) that came down to within about 2 inches of my face and then for about 25 minutes travelled down the body recording all those little radiation units wherever they are, and I headed into the tunnel of the machine. She asked me if I wanted music. I wondered briefly if they had the Pete Seeger sessions of Bruce Springsteen, but decided against it as I was supposed to lie still. She helped me do that, by way by putting a big rubber band around my feet just over the balls at the toe joints. With no music I thought about my curiosity theory—relating Tim’s fireworks image to my compass image and working out the notion that a person had to have some kind of training to learn to do something with the flash from the fireworks. That took about a half hour and the process was complete. The flat surface drew back, then raised and I got up. I needed my elbows the core strength from the Houston Pilates course has weakened. After filling my pockets with keys, change, wallet and pen, I sat for a second metal-encased needle shot, this time on the right arm, more cotton and tape. She gave me the materials and information I needed for the prostascint scan on Monday, and off we went.
Monday. The prostascint was more involved. To prepare I had to perform the same kind of actions needed for a colonoscopy. I’ll spare you the details of the effectiveness of the process, but the process itself is describable. I ate a full lunch on Sunday. The next meal I ate was after the procedure on Monday morning. Throughout Sunday afternoon I drank about 60 ounces of water. They wanted me to drink 8 ounces every hour but all I had was a 24-ounce bottle so I used that instead. For dinner I had some not very good chicken broth and some lime jello. Then I drank the first laxative about 6:30. It fizzed a lot and was some kind of bicarbonate. Then at about 8 I took four small pills. From 8 on I spent time upstairs reading in the bathroom. That night, since I wasn’t sure what the possibilities were, I put on a pair of my old (well, unused, still in the package) paper diapers from the incontinence days (which by the way lasted about 6 weeks after my surgery and have not returned). Better safe than sorry, to coin a phrase.
We had to be in St. Paul at 8, which meant we had to leave by 6:30 at the latest. Before that departure though, I had to insert a suppository “while lying with one thigh raised,” and that had to happen two hours before departure. They actually said two hours before the scan, but I guess they figure people live 5 minutes from the hospital. The insertion occurred about 5 a.m. I had set my alarm for 5 but I never use an alarm. My body wakes me up. So I lay there from 4:30 on and finally did the deed. Then I laid there for another 45 minutes or so wondering what the big deal was and then I found out. 40 minutes later I got off the pot, took a quick shower, and about as empty in the intestinal area as a person can get (I’ll spare you the detail of how I know that, but you can always call me), we left for St. Paul. Just in case I had a change of pants and two paper diapers along and I sat on a plastic kitchen bag that I unfolded under me. No problem.
We arrived in St. Paul and wound down White Bear Avenue to Upper Afton over to 61, then Burns which turns into Shephard to Chestnut. And at the Science Museum we turned up past the old Dorothy Day mansion, now split into condos, and drove up to United on Smith. We parked on level three and soon were inside the hospital back at the Imagining Center and then quickly to the NucMed waiting area. No TV on, thank heaven. Good thing we were there. The suppository uttered its final statement. Off to the restroom, a unisex room with an odd sign that told me to be sure to unlock the door before I left, though the very act of turning the knob to open the door to leave sprung the lock. Oh well. Better before the process than during.
The same Julie met me, took me to the scan room, a different one than I had been in on Thursday. She told me I had to remove my pants this time because the zipper would obscure the image. She left for a moment to give me privacy. I slipped off the pants and put on a hospital gown, remembering that the gowns opened to the back. After she returned the scan began. The machine itself—I wish I had taken pictures—was a long tube with a second, larger tube, shorter but wider in diameter at the front. Inserted into the tube was a flat bed that I laid on. I had a pillow under my knees, my toes once again rubber banded together, and two pillows for my head. Once again I had the choice of music or not. I chose not. I wonder if they are like karaoke DJs and have all kinds of music. Never found out. Didn’t ask.
The difficulty with this scan is that I had to keep my arms above my head for the entire time. So I put them there forearm to forearm against each other both touching the top of my head. And in I went. The larger tube carried the cameras, two of them, 180 degrees separated. They were aimed at the prostate bed. For the next 24 minutes they gradually made a complete circle of my body, creating, Julie told me, a 3D image of that region, the better, I suppose, to spot tumors, or elves. During those 24 minutes I worked through some very important ideas, but darn, as I write I can’t remember what they were. We only spoke twice. Once I remembered that I had not turned off my cell phone, and afraid that its being on would screw up the test causing me to return, I called out to Julie, who was behind a glass, but protective screen. She told me not to worry. If I got a call, I would have to let it go to voice mail. At 12 minutes she told me I was half way through.
Finally the 24 minutes were over. Scan 2, a four-minute CAT scan was next. I continued to lie there, more whirring and the scan was over. The machine ejected me from the innards of the tube. I stretched my arms which felt good not only because they were stiff but because my hands were cold. As I lay there, Julie asked if I wanted to get up, use the restroom or stretch. I said no, let’s get on with it. We did. For the second test I would be inserted all the way into the machine, much further than for the first test and slowly moved back to the initial position that I was currently in. But this time the sides of the bed fell away so my arms hung out in space. In order to keep them there for the 27-minute process, she strapped them in. That means she had three wide straps that she pulled over me and connected on the other side so that the straps formed a kind of sling. Actually it was fairly comfortable. This scan produced a two-dimensional picture of my entire body, looking for the same radiation blinks that it looked for in the prostate bed. Where ever my parasite friend has burrowed, they intend to find it, so they can root it out.
This time the flat part of the camera tube—I didn’t mention that before—was lowered to about 2 inches above my nose. This surface had a large X, two perpendicular lines with Y at the top and X off to my left. When the machine, and process, began I was deep in the machine with the flat surface above me. I was glad I am not claustrophobic. Gradually I was pulled out of the machine and my head moved from near the bottom to near the top of the surface. Besides the constant clicking of the machine the only physical thing I noticed was that my fingers dragged along the inside surface of the smaller tube at a slow but steady pace. Once again I thought through important issues. I think I was thinking about concepts related to my job, like learning, but, here too, I don’t remember. Maybe I told Mary later at breakfast and she will remember.
Finally the scan was over. Actually the hour passed rather quickly. Julie told me that I had really cleaned my self well, and as a result she felt that the machine had produced a clean (I would suppose so) image. I wondered briefly if she could read the image well enough to know what the doctor would tell me on Thursday. I considered asking her but changed my mind. Deal with now, not the future.
She undid the straps, removed the rubber band, helped me sit up, then left the room so I could get the jeans back on. I did. She returned, told me that the images would be sent to the doctor within two business days. I told her I had an appointment for Thursday. She said good, bid me good-bye and good luck, and I left. At the NucMed waiting area I called to Mary, she got up, we walked out. In the lobby we both realized we should hit the restroom one time. Hers was open and she went in. Mine was closed for cleaning. I wandered the halls, found two locked, with people in them, I hoped, found one back at NucMed and rested.
We decided to eat breakfast at the hospital cafeteria. I wasn’t very hungry and Mary had eaten before we left—she had 40 minutes to do so you might recall. I had a prepackaged bowl of Smart Start and a toasted bagel. One star. We ate outside in their not very ambient courtyard, on those gunk-sprayed-over-metal-grille tables, talked for a while, made contact with Nate about returning the car we let him use during the wedding weekend. About 9:45 we walked back to the parking ramp, found the car, drove to the gate, paid the man, turned out onto Walnut, rolled down to Shephard road, turned east and headed home.
Thursday, the next week.
The trip to find the results was easy. We had to be in Maplewood at 9:30. About 8 we left, me driving. I wanted to drive. Down the hill, across Wilson Creek, left at the library, north to 94 and off to Maplewood. We decided to try a new route, to take 61 north from 94 because 61 ran right past the clinic. Good thing we had extra time. Highway 61 turns south off 94, but we had to wind all through east St. Paul, till we found Arcade street which is also 61 north. This route is more interesting than 694 to White Bear and south to MOHPA (Minnesota Oncology and Hematology, PA) but longer.
The car parked, we walked in to find it was patient appreciation day. We each got a MOHPA water bottle, I had a lemon muffin, and entered their drawing, all while we waited to be called in.
I give you all these details because they are what I occupied myself with all the night before and in the morning while I lay awake, during the shower and on the drive. What can I say? Why do they take a bone scan? Because the damn stuff could be Everywhere. What is the prostascint looking for? Not just the spot near in the prostate bed, but the stuff in lymph nodes, bladder, testicles, and I suppose pancreas, liver, lungs. While I am not sure it was just swagger on my part, I have repeatedly looked into my soul and found that I am not afraid. But still. I walked in there wondering in the back of my mind whether I would be told to enjoy this Christmas because I wouldn’t be here next. I had done my best to prepare myself for that and for telling other people, whose obvious suffering at this bad news is both heartening and a bit guilty-causing—I am sorry to bring such distress into anyone’s life. Mary? Zoe? The kids? I don’t know what it is like to be told that. I thought about it, realized that it at least had the benefit of being definite, and then believed I could take the blow. After that set of thoughts, though, I deliberately turned away. In this extended slow motion sequence I refuse to dwell on all the what if’s. I could dwell on the life span of gleason 9 patients. I could dwell on the effectiveness of various therapies, and the correctness of what has already been done to me. I could start in on ‘this is the last…’ whatever. No good. If this kind of disease does nothing else, it convinces you quickly to live in Now. Watch the sunlight on the sumac on the way to work. Notice the dimples in Mary’s smile. Get on with today and with implementing dreams.
So we sat there. Someone called my name. We got up and followed her. At weigh-in I was 205. We went into the room, reviewed my medications and birthdate. She left. We waited for Warren. In he came, a big fellow, with gray hair, and an amiable smile. He has bedside manner down. He was carrying two envelopes. The results. My future. After a few pleasantries he opened the first, the bone scan. They are basically x-rays, so he inserted them into one of those wall light screens and told me to look. I have arthritis in a number of places, all of which showed on the scan—neck, shoulders, knees, spine. But no bone cancer. He took them down, put them back in the envelope and gave them to me. I guess I will show them to Mark to see how to follow up on them. One down.
Next was the prostascint scan. These are more like photos so the screen was not much help. He explained that a brown smudge—love those technical words for the results of a million dollar machine—was cancer. The word he used was ‘uptake.’ He was looking for uptake. He pointed out two. One was in the prostrate bed and the other in the bladder. He did it with the same professional calm that an English teacher points out a comma splice. He had me look. I saw them. Where would this go? No others. We scoured the pictures like you might scour a map looking for a small town name or a street name. Nothing but those two spots.
So we sat down and he started in to discuss lupron. He asked me if I knew the side effects. I said that I had asked my niece to come watch chick flicks with me so we could cry together. I guess that caught him off guard. So I suggested that he might like to explain other effects. The key one is hot flashes. Also some weight gain and an even further loss of libido (he just said loss but I added the even further—no prostate cuts down on this side of life a bit—we can talk about that too if you like. Call me. I might get it into one of these reports, but not now. I will say that libido is not eliminated and in its own new way sort of fun).
The discussion turned to radiation and the time schedule. Surprise, there are two planning sessions in November. One is a CT scan, again, to precisely locate the cancer and mark my body so the radiation gun targets it exactly. The other, nice, is that I need to have some gold markers “placed” in the area. How is that done? I inquired naively. Same way the biopsy is done, through the anus. Beautiful. Sershon does it. McGuire’s people will talk to Sershon’s people who will talk to my people (Mary) and I will show up for the ‘placement.’ The radiation could start at the end off November. It seemed apparent that I needed to OK all this so I said let’s do it. And that started the process. I could have the lupron shot there today and I agreed to that.
Then we got to the questions. Since I felt that one elephant was munching contentedly in the room, I thought it best to ask—what about the bladder? I was amazed at how calm I was as I asked that question. Nothing. The brown always shows up there. No cancer there. I was amazed again that I didn’t get light-headed and faint. We worked through some other questions, including the name of the man who read my first biopsy. I really want to understand how the two biopsies could be so different. I don’t expect to get confrontational about it, but the difference appears to be a major hole in the system.
While we were questioning I asked if this treatment plan would get me out of jury duty. He said yes, if it was during the radiation or if I got hot flashes so extreme that I had trouble concentrating. We traded jury stories. He had been on a silly one. I had been on a sexual assault one where we let the guy off due to it not being proved beyond a reasonable doubt. That led to a brief discussion of use of CSI techniques in small town trials, and he took a shot that was pretty interesting. He suggested that in at least one small town in Alaska the woman was required to pay for the dna test if she wanted one in the trial. I am not sure that that is true, but there he was. A democrat. We told the story of being at breakfast at a bed and breakfast in St. Johns New Brunswick. We were the only Americans of about 10 people in the small room. The proprietor loved to get things going so he sidled over to our table and told us that last week he had had a republican there but he kicked him out. I guess Mary and I wear our politics on our sleeves. An aside—the proprietor then got after the Russian who was travelling around Canada. What did he think of the U.S. and Bush? The Russian said that they all loved him because Bush had gotten the dollar devalued, and the ruble consequently went up, and now Russians could afford to travel around the world.
That laugh over, the doctor left and we never saw him again. Another nurse came in, told us she would administer the shot. We talked a bit. I love the customer attention, the sense that they want us to know that people are helping you, another person. She was from Hudson. Her kids went to school at a private academy in St. Paul, so no, she didn’t know our friends the Leesons. I decided not to mention politics. She left to get the shot. About 15 minutes later she returned to tell us that the delay was because they had to get the ok from Eau Claire Group Health. After that permission came, she came in with the shot, my third one in this process, all from needles and vials about the same size. I asked what the shot cost. She called the pharmacist. Six hundred dollars. I leaned over the examining bench, pulled my pants down to about half way down the cheeks. She slipped the top of my Travel Smiths down about two inches and injected me on the top curve of the right cheek. That was it.
She led us to the scheduler. We set up the general time frame, did the ‘people’ thing, and off we went, out past the patient appreciation displays, through the doors, across the lot to the car. Mary drove. That was fine with me. I was more wiped out than I thought I would be. She confessed that her heart had dropped at the casual mention of the bladder also. That strange feeling of love that unites two people into one came to me. Maybe this is what angels are. We turned onto Beam, onto White Bear, onto 694, and headed into the even clearer now.
Dan
September 24, 2008
During the past week I have had two tests that determine where the excess cancer is so that they can focus the radiation guns on the stuff to zap it. One test was a bone scan and the other is a prostascint scan. Both scans check the entire body to see if the cancer has spread beyond where they think it probably is; the prostascint creates a 3D picture of the area vacated by the prostate, called the ‘prostate bed,’ a rather ironic term, granted the effects of having your prostate removed.
Both scans use radioactive material, injected into me, more on that later. The basic theory is that prostate cancer cells will unite with the material injected into me. Sorry, I am not sure which particle or atomic element that part of the radium is. After the radioactive material is in the body and has united, the RA shows up on the films that the scanning machines use. Thus the doctors can ‘read’ the film, determine the location of the cancerous cells, and create a plan of therapy. I think I have all this theory phrased correctly, but I, of course, could have it not quite right, though I have the general outline correct. Bone scans are used for all cancers that might not be exactly located and prostascint is used specifically for prostate cancers, if the cancer is determine to be outside the prostate, which they discovered was the case when they performed the surgery.
Thursday. All of this took place at United Hospital, as nice a place (granted the circumstances) that a person could want. What I really mean by that is that someone has informed the culture there with pleasantness. Everyone we met was helpful, if asked, and friendly looking at least as they passed us in the halls. We both felt that we were people being treated, not bodies being worked on.
The Imaging Center is on the first floor and very easy to find. We walked in, registered—a pleasant experience with people who do this so often that they could do it in their sleep but who act like you are the most important thing they have to do right now and attend to it. We got there at 8 am on Thursday. By 8:15 I was getting the first injection, in the NucMed area—Nuclear Medicine, which all of us, including me now that I have been initiated never call by the full phrase. I got the injection in my left arm. Before we started the tech (more inside jargon) Julie asked me if I wanted an IV or just this shot and later the other one. We went around a bit on that. I wanted to know why I would want an IV and the answer is that some people can’t stand two shots thus want the IV so both occur at the same place and they only have to be poked once. Lord. I went with two.
The actual shot was interesting. Well, it was your basic poke, push the plunger down and have me hold cotton over the tiny wound while she applied the tape. The thing was the holder. It was larger—she needed her entire hand to hold it. But it was metal. The needle and tube holding the material sat inside the holder until she pulled it out and performed the act. I asked why the metal. It is a shield against the RA material. It turns out that she wears a monitor that constantly measures the level of radiation either in or near her, not sure which, but if the level were too high, it would sound and she would, I suppose, have to be inspected.
That was it. The injection took about 20 seconds. I got up and Mary and I left. We had a not great breakfast in the hospital cafeteria, read the paper and went for a walk, to return at 11 for the actual scan. United is in an interesting part of downtown St. Paul. We walked up Smith, looking for the Catholic church in the area, Assumption, the oldest church in Minnesota (1874, ordered built by John Ireland). Two distinctive spires front the building. The old wood door with those foot-long door pulls opened easily and we entered a 19th century well-preserved building. Wood backdrops, not sure what the technical word is for them (reredos? Retablo? Altarpiece?), behind St. Joseph’s small altar to the right and Mary’s to the left. The old main altar was way back there with the new altar much closer to the pews. The building is a little like a basilica, with columns down each side of the main pews and aisle and then an aisle and pews between the columns and the walls. Along the walls were the stations, large plaster models. All the statues were plaster, that 19th century romantic view of holy people. We translated the Latin across the wall above the altar, trying to remember nominative, dative, and accusative endings. I don’t remember the exact phrase but it was to the effect that the angels sing the glory and honor of Mary in heaven.
The area itself is also the home of a homeless assistance center, the new Dorothy Day center. The old one is down near the river being subdivided into condos. On the way from the hospital we walked past guy after guy sleeping on cardboard along the grass boulevard and at the center numerous people just sat in the sun. Interestingly we were never panhandled. Sort of a first for me.
We walked toward the river, ended up on the terrace outside the Science Museum, overlooking the river. We watched. Below, a prairie garden, Warner Road, the river, some barges. The information displays on signs spread around the terrace lead you effortlessly into the nature and impact of the river. Time slipped by. We walked back to the hospital.
We got there a bit before 11. The Imagining Center receptionist took us to the waiting area. Julie returned, got me. Mary had to stay in that small room and listen to the TV blare on about McCain and Palin, who were in town that day. She asked to turn it off, but one woman wanted to watch because she watched everything since this was so historic an election.
Bone scans are pretty easy to report on. I took all the metal out of my pockets, took off my glasses, and got onto the bed of the machine. Essentially the machine is a long tube. The actual camera is a flat surface (that’s what I could see) that came down to within about 2 inches of my face and then for about 25 minutes travelled down the body recording all those little radiation units wherever they are, and I headed into the tunnel of the machine. She asked me if I wanted music. I wondered briefly if they had the Pete Seeger sessions of Bruce Springsteen, but decided against it as I was supposed to lie still. She helped me do that, by way by putting a big rubber band around my feet just over the balls at the toe joints. With no music I thought about my curiosity theory—relating Tim’s fireworks image to my compass image and working out the notion that a person had to have some kind of training to learn to do something with the flash from the fireworks. That took about a half hour and the process was complete. The flat surface drew back, then raised and I got up. I needed my elbows the core strength from the Houston Pilates course has weakened. After filling my pockets with keys, change, wallet and pen, I sat for a second metal-encased needle shot, this time on the right arm, more cotton and tape. She gave me the materials and information I needed for the prostascint scan on Monday, and off we went.
Monday. The prostascint was more involved. To prepare I had to perform the same kind of actions needed for a colonoscopy. I’ll spare you the details of the effectiveness of the process, but the process itself is describable. I ate a full lunch on Sunday. The next meal I ate was after the procedure on Monday morning. Throughout Sunday afternoon I drank about 60 ounces of water. They wanted me to drink 8 ounces every hour but all I had was a 24-ounce bottle so I used that instead. For dinner I had some not very good chicken broth and some lime jello. Then I drank the first laxative about 6:30. It fizzed a lot and was some kind of bicarbonate. Then at about 8 I took four small pills. From 8 on I spent time upstairs reading in the bathroom. That night, since I wasn’t sure what the possibilities were, I put on a pair of my old (well, unused, still in the package) paper diapers from the incontinence days (which by the way lasted about 6 weeks after my surgery and have not returned). Better safe than sorry, to coin a phrase.
We had to be in St. Paul at 8, which meant we had to leave by 6:30 at the latest. Before that departure though, I had to insert a suppository “while lying with one thigh raised,” and that had to happen two hours before departure. They actually said two hours before the scan, but I guess they figure people live 5 minutes from the hospital. The insertion occurred about 5 a.m. I had set my alarm for 5 but I never use an alarm. My body wakes me up. So I lay there from 4:30 on and finally did the deed. Then I laid there for another 45 minutes or so wondering what the big deal was and then I found out. 40 minutes later I got off the pot, took a quick shower, and about as empty in the intestinal area as a person can get (I’ll spare you the detail of how I know that, but you can always call me), we left for St. Paul. Just in case I had a change of pants and two paper diapers along and I sat on a plastic kitchen bag that I unfolded under me. No problem.
We arrived in St. Paul and wound down White Bear Avenue to Upper Afton over to 61, then Burns which turns into Shephard to Chestnut. And at the Science Museum we turned up past the old Dorothy Day mansion, now split into condos, and drove up to United on Smith. We parked on level three and soon were inside the hospital back at the Imagining Center and then quickly to the NucMed waiting area. No TV on, thank heaven. Good thing we were there. The suppository uttered its final statement. Off to the restroom, a unisex room with an odd sign that told me to be sure to unlock the door before I left, though the very act of turning the knob to open the door to leave sprung the lock. Oh well. Better before the process than during.
The same Julie met me, took me to the scan room, a different one than I had been in on Thursday. She told me I had to remove my pants this time because the zipper would obscure the image. She left for a moment to give me privacy. I slipped off the pants and put on a hospital gown, remembering that the gowns opened to the back. After she returned the scan began. The machine itself—I wish I had taken pictures—was a long tube with a second, larger tube, shorter but wider in diameter at the front. Inserted into the tube was a flat bed that I laid on. I had a pillow under my knees, my toes once again rubber banded together, and two pillows for my head. Once again I had the choice of music or not. I chose not. I wonder if they are like karaoke DJs and have all kinds of music. Never found out. Didn’t ask.
The difficulty with this scan is that I had to keep my arms above my head for the entire time. So I put them there forearm to forearm against each other both touching the top of my head. And in I went. The larger tube carried the cameras, two of them, 180 degrees separated. They were aimed at the prostate bed. For the next 24 minutes they gradually made a complete circle of my body, creating, Julie told me, a 3D image of that region, the better, I suppose, to spot tumors, or elves. During those 24 minutes I worked through some very important ideas, but darn, as I write I can’t remember what they were. We only spoke twice. Once I remembered that I had not turned off my cell phone, and afraid that its being on would screw up the test causing me to return, I called out to Julie, who was behind a glass, but protective screen. She told me not to worry. If I got a call, I would have to let it go to voice mail. At 12 minutes she told me I was half way through.
Finally the 24 minutes were over. Scan 2, a four-minute CAT scan was next. I continued to lie there, more whirring and the scan was over. The machine ejected me from the innards of the tube. I stretched my arms which felt good not only because they were stiff but because my hands were cold. As I lay there, Julie asked if I wanted to get up, use the restroom or stretch. I said no, let’s get on with it. We did. For the second test I would be inserted all the way into the machine, much further than for the first test and slowly moved back to the initial position that I was currently in. But this time the sides of the bed fell away so my arms hung out in space. In order to keep them there for the 27-minute process, she strapped them in. That means she had three wide straps that she pulled over me and connected on the other side so that the straps formed a kind of sling. Actually it was fairly comfortable. This scan produced a two-dimensional picture of my entire body, looking for the same radiation blinks that it looked for in the prostate bed. Where ever my parasite friend has burrowed, they intend to find it, so they can root it out.
This time the flat part of the camera tube—I didn’t mention that before—was lowered to about 2 inches above my nose. This surface had a large X, two perpendicular lines with Y at the top and X off to my left. When the machine, and process, began I was deep in the machine with the flat surface above me. I was glad I am not claustrophobic. Gradually I was pulled out of the machine and my head moved from near the bottom to near the top of the surface. Besides the constant clicking of the machine the only physical thing I noticed was that my fingers dragged along the inside surface of the smaller tube at a slow but steady pace. Once again I thought through important issues. I think I was thinking about concepts related to my job, like learning, but, here too, I don’t remember. Maybe I told Mary later at breakfast and she will remember.
Finally the scan was over. Actually the hour passed rather quickly. Julie told me that I had really cleaned my self well, and as a result she felt that the machine had produced a clean (I would suppose so) image. I wondered briefly if she could read the image well enough to know what the doctor would tell me on Thursday. I considered asking her but changed my mind. Deal with now, not the future.
She undid the straps, removed the rubber band, helped me sit up, then left the room so I could get the jeans back on. I did. She returned, told me that the images would be sent to the doctor within two business days. I told her I had an appointment for Thursday. She said good, bid me good-bye and good luck, and I left. At the NucMed waiting area I called to Mary, she got up, we walked out. In the lobby we both realized we should hit the restroom one time. Hers was open and she went in. Mine was closed for cleaning. I wandered the halls, found two locked, with people in them, I hoped, found one back at NucMed and rested.
We decided to eat breakfast at the hospital cafeteria. I wasn’t very hungry and Mary had eaten before we left—she had 40 minutes to do so you might recall. I had a prepackaged bowl of Smart Start and a toasted bagel. One star. We ate outside in their not very ambient courtyard, on those gunk-sprayed-over-metal-grille tables, talked for a while, made contact with Nate about returning the car we let him use during the wedding weekend. About 9:45 we walked back to the parking ramp, found the car, drove to the gate, paid the man, turned out onto Walnut, rolled down to Shephard road, turned east and headed home.
Thursday, the next week.
The trip to find the results was easy. We had to be in Maplewood at 9:30. About 8 we left, me driving. I wanted to drive. Down the hill, across Wilson Creek, left at the library, north to 94 and off to Maplewood. We decided to try a new route, to take 61 north from 94 because 61 ran right past the clinic. Good thing we had extra time. Highway 61 turns south off 94, but we had to wind all through east St. Paul, till we found Arcade street which is also 61 north. This route is more interesting than 694 to White Bear and south to MOHPA (Minnesota Oncology and Hematology, PA) but longer.
The car parked, we walked in to find it was patient appreciation day. We each got a MOHPA water bottle, I had a lemon muffin, and entered their drawing, all while we waited to be called in.
I give you all these details because they are what I occupied myself with all the night before and in the morning while I lay awake, during the shower and on the drive. What can I say? Why do they take a bone scan? Because the damn stuff could be Everywhere. What is the prostascint looking for? Not just the spot near in the prostate bed, but the stuff in lymph nodes, bladder, testicles, and I suppose pancreas, liver, lungs. While I am not sure it was just swagger on my part, I have repeatedly looked into my soul and found that I am not afraid. But still. I walked in there wondering in the back of my mind whether I would be told to enjoy this Christmas because I wouldn’t be here next. I had done my best to prepare myself for that and for telling other people, whose obvious suffering at this bad news is both heartening and a bit guilty-causing—I am sorry to bring such distress into anyone’s life. Mary? Zoe? The kids? I don’t know what it is like to be told that. I thought about it, realized that it at least had the benefit of being definite, and then believed I could take the blow. After that set of thoughts, though, I deliberately turned away. In this extended slow motion sequence I refuse to dwell on all the what if’s. I could dwell on the life span of gleason 9 patients. I could dwell on the effectiveness of various therapies, and the correctness of what has already been done to me. I could start in on ‘this is the last…’ whatever. No good. If this kind of disease does nothing else, it convinces you quickly to live in Now. Watch the sunlight on the sumac on the way to work. Notice the dimples in Mary’s smile. Get on with today and with implementing dreams.
So we sat there. Someone called my name. We got up and followed her. At weigh-in I was 205. We went into the room, reviewed my medications and birthdate. She left. We waited for Warren. In he came, a big fellow, with gray hair, and an amiable smile. He has bedside manner down. He was carrying two envelopes. The results. My future. After a few pleasantries he opened the first, the bone scan. They are basically x-rays, so he inserted them into one of those wall light screens and told me to look. I have arthritis in a number of places, all of which showed on the scan—neck, shoulders, knees, spine. But no bone cancer. He took them down, put them back in the envelope and gave them to me. I guess I will show them to Mark to see how to follow up on them. One down.
Next was the prostascint scan. These are more like photos so the screen was not much help. He explained that a brown smudge—love those technical words for the results of a million dollar machine—was cancer. The word he used was ‘uptake.’ He was looking for uptake. He pointed out two. One was in the prostrate bed and the other in the bladder. He did it with the same professional calm that an English teacher points out a comma splice. He had me look. I saw them. Where would this go? No others. We scoured the pictures like you might scour a map looking for a small town name or a street name. Nothing but those two spots.
So we sat down and he started in to discuss lupron. He asked me if I knew the side effects. I said that I had asked my niece to come watch chick flicks with me so we could cry together. I guess that caught him off guard. So I suggested that he might like to explain other effects. The key one is hot flashes. Also some weight gain and an even further loss of libido (he just said loss but I added the even further—no prostate cuts down on this side of life a bit—we can talk about that too if you like. Call me. I might get it into one of these reports, but not now. I will say that libido is not eliminated and in its own new way sort of fun).
The discussion turned to radiation and the time schedule. Surprise, there are two planning sessions in November. One is a CT scan, again, to precisely locate the cancer and mark my body so the radiation gun targets it exactly. The other, nice, is that I need to have some gold markers “placed” in the area. How is that done? I inquired naively. Same way the biopsy is done, through the anus. Beautiful. Sershon does it. McGuire’s people will talk to Sershon’s people who will talk to my people (Mary) and I will show up for the ‘placement.’ The radiation could start at the end off November. It seemed apparent that I needed to OK all this so I said let’s do it. And that started the process. I could have the lupron shot there today and I agreed to that.
Then we got to the questions. Since I felt that one elephant was munching contentedly in the room, I thought it best to ask—what about the bladder? I was amazed at how calm I was as I asked that question. Nothing. The brown always shows up there. No cancer there. I was amazed again that I didn’t get light-headed and faint. We worked through some other questions, including the name of the man who read my first biopsy. I really want to understand how the two biopsies could be so different. I don’t expect to get confrontational about it, but the difference appears to be a major hole in the system.
While we were questioning I asked if this treatment plan would get me out of jury duty. He said yes, if it was during the radiation or if I got hot flashes so extreme that I had trouble concentrating. We traded jury stories. He had been on a silly one. I had been on a sexual assault one where we let the guy off due to it not being proved beyond a reasonable doubt. That led to a brief discussion of use of CSI techniques in small town trials, and he took a shot that was pretty interesting. He suggested that in at least one small town in Alaska the woman was required to pay for the dna test if she wanted one in the trial. I am not sure that that is true, but there he was. A democrat. We told the story of being at breakfast at a bed and breakfast in St. Johns New Brunswick. We were the only Americans of about 10 people in the small room. The proprietor loved to get things going so he sidled over to our table and told us that last week he had had a republican there but he kicked him out. I guess Mary and I wear our politics on our sleeves. An aside—the proprietor then got after the Russian who was travelling around Canada. What did he think of the U.S. and Bush? The Russian said that they all loved him because Bush had gotten the dollar devalued, and the ruble consequently went up, and now Russians could afford to travel around the world.
That laugh over, the doctor left and we never saw him again. Another nurse came in, told us she would administer the shot. We talked a bit. I love the customer attention, the sense that they want us to know that people are helping you, another person. She was from Hudson. Her kids went to school at a private academy in St. Paul, so no, she didn’t know our friends the Leesons. I decided not to mention politics. She left to get the shot. About 15 minutes later she returned to tell us that the delay was because they had to get the ok from Eau Claire Group Health. After that permission came, she came in with the shot, my third one in this process, all from needles and vials about the same size. I asked what the shot cost. She called the pharmacist. Six hundred dollars. I leaned over the examining bench, pulled my pants down to about half way down the cheeks. She slipped the top of my Travel Smiths down about two inches and injected me on the top curve of the right cheek. That was it.
She led us to the scheduler. We set up the general time frame, did the ‘people’ thing, and off we went, out past the patient appreciation displays, through the doors, across the lot to the car. Mary drove. That was fine with me. I was more wiped out than I thought I would be. She confessed that her heart had dropped at the casual mention of the bladder also. That strange feeling of love that unites two people into one came to me. Maybe this is what angels are. We turned onto Beam, onto White Bear, onto 694, and headed into the even clearer now.
May 2008 after the first post operative psa
Hi, I am OK. Here’s what that means. My PSA level is 0.175. The “cutoff” is 0.20. My reading is interpreted by my urologist/oncologist as “negligible.” As a result no further treatment is necessary at this time, and I have no restrictions on my activities. Which for me means I can start biking and plan bike trips, and can also plan our summer activities. All this is a wonderful relief. And I thank everyone for your thoughts and prayers. The support I have received from you all is very important to me.
Now, a bit more. Actually I am ok “for now.” I have to have another psa taken in 90 days, which is the schedule that was set out before I had surgery. However, since my gleason number (the way they grade the severity of the cancer) became 9 rather than stay at 6, there is a distinct possibility of a recurrence. (They take one reading after the biopsy and a second after the surgery.) If that happens, they most likely would radiate my pelvic area, to, as the urologist said, “mop up.” The urologist also said two interesting things about my gleason number change. 1. For it to go up is relatively rare and 2. Because testing methods are getting more accurate, the urologists are starting to see more higher ratings. The every 90 days regimen goes on for 2 years. If at the end of two years, I am still in this range,
Then I suppose I will be as cured as it is possible to say one is.
So that is it for now. Today, finally, it is clear blue sky and the trees are showing spring green. I will do my best to savor each day and I urge you to do the same. Get done reading this email and go tell someone important to you that you love them. Please be assured that when I say I am not worried, nor afraid, that I mean exactly that.
That’s it. Off to the rest of the day. And on with studying Italian and planning to stand in Siyeh Pass and tell cancer I got this one in. Want to join us up there?
Love,
Dan
Now, a bit more. Actually I am ok “for now.” I have to have another psa taken in 90 days, which is the schedule that was set out before I had surgery. However, since my gleason number (the way they grade the severity of the cancer) became 9 rather than stay at 6, there is a distinct possibility of a recurrence. (They take one reading after the biopsy and a second after the surgery.) If that happens, they most likely would radiate my pelvic area, to, as the urologist said, “mop up.” The urologist also said two interesting things about my gleason number change. 1. For it to go up is relatively rare and 2. Because testing methods are getting more accurate, the urologists are starting to see more higher ratings. The every 90 days regimen goes on for 2 years. If at the end of two years, I am still in this range,
Then I suppose I will be as cured as it is possible to say one is.
So that is it for now. Today, finally, it is clear blue sky and the trees are showing spring green. I will do my best to savor each day and I urge you to do the same. Get done reading this email and go tell someone important to you that you love them. Please be assured that when I say I am not worried, nor afraid, that I mean exactly that.
That’s it. Off to the rest of the day. And on with studying Italian and planning to stand in Siyeh Pass and tell cancer I got this one in. Want to join us up there?
Love,
Dan
February 4--things take a turn for the worse
Hi, well, today I had my first post-operative report and there is good news and not so good news. So, the not-so-good--I apparently am not cancer-free. But I am not on the Bucket List. Here is the explanation. My prostate was more cancerous than had been determined by the initial biopsy. The initial biopsy assessed the cancer at "Gleason 6" (of 10) but in reality it is "Gleason 9." It was more advanced than they had thought. It had spread outside the prostate, on the right side, including into the vas deferens on that side (you can google vas deferens, or thank a good high school biology teacher). The urologist told us that this turn of affairs is highly unusual, but not unexpected since prostate cancer is a kind of 'mix' of levels, so what you see at one point is not what you are guaranteed to get at another.
Well, what does this mean? It means that I have a second post-operative check on May 7, when the results of the PSA test I have in late April will be assessed. If the PSA is zero, no further action is needed. If the PSA records a number, then probably I will have a course of radiation. Until then, may I suggest that we all eat, drink, and be merry? And I will spend as much time as I can hugging you all, and that dreamboat Zoe.
Now to the good news. For one, the catheter is out and, as my soggy Depends alert me, its removal has not impeded my ability to course volumes of liquid from the inner depths to the faraway shores. I am pretending I am an astronaut in space, peeing my pants on a great adventure. For another, the choice to have the surgery is dramatically confirmed. Had I chosen radiation, the treatment would have had nearly no effect, other than to wear me out. For a third, while the news rocked me for a minute, I remain, as I was before, neither afraid nor worried.
BTW, I liked the Aeneid so much--could not believe that the translation I read felt like a story not a pompous rendition of a myth, that your mother bought me the Iliad and Odyssey by the same translator. Last night I finally figured out that Odysseus was the love slave of the goddess Calypso who is often referred to as having lovely braids. Somehow I missed all the action the other times I have read this stuff. On to more sex and gore.
Call when you can.
I love you all very, very much.
D
Well, what does this mean? It means that I have a second post-operative check on May 7, when the results of the PSA test I have in late April will be assessed. If the PSA is zero, no further action is needed. If the PSA records a number, then probably I will have a course of radiation. Until then, may I suggest that we all eat, drink, and be merry? And I will spend as much time as I can hugging you all, and that dreamboat Zoe.
Now to the good news. For one, the catheter is out and, as my soggy Depends alert me, its removal has not impeded my ability to course volumes of liquid from the inner depths to the faraway shores. I am pretending I am an astronaut in space, peeing my pants on a great adventure. For another, the choice to have the surgery is dramatically confirmed. Had I chosen radiation, the treatment would have had nearly no effect, other than to wear me out. For a third, while the news rocked me for a minute, I remain, as I was before, neither afraid nor worried.
BTW, I liked the Aeneid so much--could not believe that the translation I read felt like a story not a pompous rendition of a myth, that your mother bought me the Iliad and Odyssey by the same translator. Last night I finally figured out that Odysseus was the love slave of the goddess Calypso who is often referred to as having lovely braids. Somehow I missed all the action the other times I have read this stuff. On to more sex and gore.
Call when you can.
I love you all very, very much.
D
Letter to Joe, my teacher and mentor
I sent this letter on October 30, 2007 to my friends Joe and Jo Welch, friends in Seattle who do not use email. I had sent a similar version to my email friends and family.
Dear Joe and Jo,
I have had some news that has brought me up short. I have prostate cancer. The Gleason number is 3+3=6, so it is classified as early and less aggressive (1+1=2 is the best; 5+5=10 is the worst; to have the same numbers on either side of the plus sign is also a good sign). At this time I am researching the various therapies--it turns out that the decision on which therapy to choose does not have to be made quickly. Whatever I decide will not happen until January at the earliest. Probably I will do surgery.
I had suspected it for a while. A routine blood test turned up a high PSA and over the next weeks I had a biopsy which confirmed the presence of the cancer. There is a funny, well sort of funny, story on how I came to have that test. After we returned from Australia in July we just couldn't bring ourselves to drive for three days out to British Columbia to hike, so we cancelled that trip. As a result of that cancellation we decided to attend the wedding of my brother’s grandson in August. At that wedding, basically showing off as I taught a great niece how to do the Lindy, I tore the cartilage in my knee. Before I could have surgery (which went very well; Mary and i walked several miles over the weekend) I had to have a physical and at that physical my GP said that as long as he had to do some tests, we may as well do the PSA. I am sure I would not have had that test for months otherwise. So it goes.
We are fine. We will get through this. Our families have been very supportive. And a bit of other news. Our granddaughter Zoe is growing rapidly; she dances, worries about being cute, can write her name, and can count. She is a wonderful little human unit. Mary has worked hard on her children's writing, taking a master's course at a literary center in Minneapolis. She has also edited her grandfather's 1903-06 letters from Harvard. I am teaching technical writing and introduction to technical communication and working hard on my other job as Director of the Teaching and Learning Center.
You know, I am surprised to find that I am not afraid. All my life I thought I would be if the grim reaper hovered near. But I have discovered a kind of calm, that I am reluctant to say moves me up to the league you have always played in. From you I learned to love the mountains and I learned love in, maybe even from, the mountains. Tonight at dusk as I drove up from teaching my late class, just at sunset, a grouse exploded, as they do, out in front of me, and I thought about the angels that the trees have sent you, and knew that I had one too. Joe, you are so important to me. I hope to be out in Seattle this summer and we can sit and laugh and laugh.
Love,
Dan
Dear Joe and Jo,
I have had some news that has brought me up short. I have prostate cancer. The Gleason number is 3+3=6, so it is classified as early and less aggressive (1+1=2 is the best; 5+5=10 is the worst; to have the same numbers on either side of the plus sign is also a good sign). At this time I am researching the various therapies--it turns out that the decision on which therapy to choose does not have to be made quickly. Whatever I decide will not happen until January at the earliest. Probably I will do surgery.
I had suspected it for a while. A routine blood test turned up a high PSA and over the next weeks I had a biopsy which confirmed the presence of the cancer. There is a funny, well sort of funny, story on how I came to have that test. After we returned from Australia in July we just couldn't bring ourselves to drive for three days out to British Columbia to hike, so we cancelled that trip. As a result of that cancellation we decided to attend the wedding of my brother’s grandson in August. At that wedding, basically showing off as I taught a great niece how to do the Lindy, I tore the cartilage in my knee. Before I could have surgery (which went very well; Mary and i walked several miles over the weekend) I had to have a physical and at that physical my GP said that as long as he had to do some tests, we may as well do the PSA. I am sure I would not have had that test for months otherwise. So it goes.
We are fine. We will get through this. Our families have been very supportive. And a bit of other news. Our granddaughter Zoe is growing rapidly; she dances, worries about being cute, can write her name, and can count. She is a wonderful little human unit. Mary has worked hard on her children's writing, taking a master's course at a literary center in Minneapolis. She has also edited her grandfather's 1903-06 letters from Harvard. I am teaching technical writing and introduction to technical communication and working hard on my other job as Director of the Teaching and Learning Center.
You know, I am surprised to find that I am not afraid. All my life I thought I would be if the grim reaper hovered near. But I have discovered a kind of calm, that I am reluctant to say moves me up to the league you have always played in. From you I learned to love the mountains and I learned love in, maybe even from, the mountains. Tonight at dusk as I drove up from teaching my late class, just at sunset, a grouse exploded, as they do, out in front of me, and I thought about the angels that the trees have sent you, and knew that I had one too. Joe, you are so important to me. I hope to be out in Seattle this summer and we can sit and laugh and laugh.
Love,
Dan
Report of my first trip to the urologist
I sent this post to my family and friends on October 24, 2007.
Well, Mary and I just got back from a 75-minute meeting with the urologist, who is, it turns out, the head of urology in his Mayo-branch hospital. He clearly led us through the explanation of the anatomy involved, the data and how it is analyzed and its implications, and the possible therapies.
I will skip the anatomy except to say that I now have a pretty good idea of where it is in my body.
As for the data, the upshot is that the cancer is in early stages and is at this point mildly aggressive (or low). The significant numbers, should you choose to look into this more deeply, are that the Gleason number is 3+3=6 and the aggressivity is TiC, both of which translate into the conclusions I already gave. The likelihood that the cancer has spread out of the prostate is near zero. The cancer itself occupies less than 5% of the gland, and is located on the back left side.
The therapies, two of which have a 90% cure and one of which has a 0% cure rate, are radiation, surgery, and surveillance. Surveillance, which means ‘do nothing,’ has a ‘nothing happens’ time line of about 10 years, followed by a ‘lots of problems’ time of 5 years and then you die. I believe that the technology they assign to you if you choose this method is a bucket.
The other two have nearly identical recovery times (6-8 weeks), cure rates of 90%, and varying complications. The first, radiation, is easy at the beginning and then hard at the end (10 minutes a day, 5 days a week, in EauClaire for 6 weeks). The second, surgery, is the reverse--a 2-day hospital stay and 6-8 weeks of recovery, hard at first and then easier. With surgery they also check to make sure the cancer has not spread to the surrounding lymph nodes. The incision is just below the belly button. If one has surgery one can have radiation if there is a recurrence (though how that would be prostate cancer is beyond me). If there is radiation, surgery is possible though very difficult, requiring a highly specialized surgeon (we are talking Mayo).
We also discussed ‘male things.’ And since all I knew was vague jokes about it, I will report that detail too. If you want to skip this paragraph, I won’t be offended. After therapy erections are almost always possible (and if not, I will finally be able to take advantage of the daily Viagra ads I receive), however, ejaculations are not because the prostate is what supplies all the fluid that emerges during that pleasant experience (well, or so I remember from the 4 times I ‘did it.’) Orgasms, so he said, are possible.
As with any therapy there are possible complications. The most common seem to be possible (oh goody) lack of bladder ‘constriction control,’ rectal pain, and possible urinary obstruction (though of course this is not possible if the prostate is removed). Whatever version I choose, I would not begin until some time after Christmas (and I do have 10 years to make this decision).
That’s it. I took no notes; Mom took copious ones. I am amazed at how much I can recall. We are fine, but tired from the long, intense concentration. Keep in touch. Love, Dan/d/oc
Well, Mary and I just got back from a 75-minute meeting with the urologist, who is, it turns out, the head of urology in his Mayo-branch hospital. He clearly led us through the explanation of the anatomy involved, the data and how it is analyzed and its implications, and the possible therapies.
I will skip the anatomy except to say that I now have a pretty good idea of where it is in my body.
As for the data, the upshot is that the cancer is in early stages and is at this point mildly aggressive (or low). The significant numbers, should you choose to look into this more deeply, are that the Gleason number is 3+3=6 and the aggressivity is TiC, both of which translate into the conclusions I already gave. The likelihood that the cancer has spread out of the prostate is near zero. The cancer itself occupies less than 5% of the gland, and is located on the back left side.
The therapies, two of which have a 90% cure and one of which has a 0% cure rate, are radiation, surgery, and surveillance. Surveillance, which means ‘do nothing,’ has a ‘nothing happens’ time line of about 10 years, followed by a ‘lots of problems’ time of 5 years and then you die. I believe that the technology they assign to you if you choose this method is a bucket.
The other two have nearly identical recovery times (6-8 weeks), cure rates of 90%, and varying complications. The first, radiation, is easy at the beginning and then hard at the end (10 minutes a day, 5 days a week, in EauClaire for 6 weeks). The second, surgery, is the reverse--a 2-day hospital stay and 6-8 weeks of recovery, hard at first and then easier. With surgery they also check to make sure the cancer has not spread to the surrounding lymph nodes. The incision is just below the belly button. If one has surgery one can have radiation if there is a recurrence (though how that would be prostate cancer is beyond me). If there is radiation, surgery is possible though very difficult, requiring a highly specialized surgeon (we are talking Mayo).
We also discussed ‘male things.’ And since all I knew was vague jokes about it, I will report that detail too. If you want to skip this paragraph, I won’t be offended. After therapy erections are almost always possible (and if not, I will finally be able to take advantage of the daily Viagra ads I receive), however, ejaculations are not because the prostate is what supplies all the fluid that emerges during that pleasant experience (well, or so I remember from the 4 times I ‘did it.’) Orgasms, so he said, are possible.
As with any therapy there are possible complications. The most common seem to be possible (oh goody) lack of bladder ‘constriction control,’ rectal pain, and possible urinary obstruction (though of course this is not possible if the prostate is removed). Whatever version I choose, I would not begin until some time after Christmas (and I do have 10 years to make this decision).
That’s it. I took no notes; Mom took copious ones. I am amazed at how much I can recall. We are fine, but tired from the long, intense concentration. Keep in touch. Love, Dan/d/oc
The story of finding that I had prostate cancer
Although I had been diagnosed months previously, I did not write the story until later. This piece, written in February, tells the story of that summer and the events leading up to the discovery. I have some dates not filled in. I will do that eventually, but they were all in September and October 2007.
The Prostate Cancer Journal.
2-19-08
On Sunday I tried for the first time to deal with my erectile dysfunction. I looked at some kinky photos, felt my cock stiffen a little, like what are now the old days, so I tried to stroke it to see if I could spring a hardon. Know what happened? I pissed into my Depends. Well, I got a good laugh, changed Depends, fortunately I didn’t wet the pants so I could keep wearing them, and changed plans. I started to work on a sudoku. I have prostate cancer. This is my story. I hope it is candid and funny. What can you do but look this kind of thing straight on and flip it the bird?
I should have kept a journal, but I didn’t so I am writing from memory, though it hasn’t been all that long. In July Mary and I went to Australia, 15 hours over and 15 more back. In late July we were supposed to go to Yoho Park to hike at Lake O’Hara, and climb up to Emerald Glacier and touch the ice. We would stay in Field, eat at the xxx, and hike the
Rockies. Then we would go to Glacier and cross Siyeh pass, one of my favorite places in the world, right up there with the little slough at Upper Whitefish Lake. Well, it’s a three-day drive and we had already done one three-day drive in May when we came home from our semester in Houston where I was a visiting professor at Rice University. Well the upshot was we didn’t want to do the drive. We cancelled—I hated doing that, and decided to attend the wedding of my brother’s grandson.
So off we went to Waukesha. The wedding was lots of fun. We got there a day early and Mike and Joanne arranged for us to tour Ten Chimneys, one of the homes of Alfred Lunt and Lynne Fontaine, both of whom my mother knew because she was the administrative assistant for Dr. Earl Schulz and they were his patients in their old age. The tour was wonderful. Then the next day we did the wedding, which was held in Frame Park, much more lovely now than when I mowed its meadows in the 60s for the Waukesha Parks and Recreation Department. One summer riding up and down those lawns I memorized all the presidents, all the kings of England and of France, and even started on the Popes. Well, as I sat there at the wedding I could remember none of them, at least not any long strings. To know that Henry V followed Henry IV seems like not much of a prodigious feat of memory. Any way Tim and ssss were married. I was so impressed with his attitude during the ceremony and the rest of the evening. Unlike the surly teenager he was (I recognized the type; I was one too), he was young, confident, and pleased.
Finally the meal was over and it was time to dance. Years ago for Susan Palmer’s wedding to Doug Wardell Mary and I had taken dance lessons and I had learned to keep time to triple-time music and over the years I had learned a number of arm/body moves. So when the dancing started, I was out there having a ball. Mike’s nieces were also dancing and having a good time, so I grabbed them and swung them around and they caught on fast and we had a good time swinging. I was showing off and loved it. Then I felt a pop in my knee. I knew I had done something bad to it. I was right. The next day I could hardly move it. Mary drove us home. In the emergency room they told me I had a torn meniscus and would need surgery. I had never heard of meniscus and had never had surgery. I scheduled an appointment with the local xxx and he confirmed the diagnosis. The meniscus was torn, I needed it surgically repaired, and before I could do that I needed to have a physical from my GP, Mark Svendson. And that is what started my prostate cancer saga.
2-20
It was ten below when I got up this morning and the sun had filled the horizon with that wonderful pre-dawn pink. I showered, dressed. Today I tried a button shirt and belted slacks for the first time in several weeks. My stomach has gone down and the slacks are finally comfortable. After the surgery the stomach distended and I couldn’t get into my 36” waist slacks even though I lost five pounds in the surgery, from 198 to 193. Speaking of my stomach, I have six incisions, the longest one from my belly button straight up for about an inch or so, three on the right side and two on the far left. I am not sure which one the prostate came out of. Right now the scabs are beginning to pull away and they are almost impossible to not play with. At any rate when I went to get the paper up at Cut Rite, where I can get it for 25 cents rather than 50 cents at MarketPlace, why I don’t know, the sun was just rising, roughly 7:05. As I came off Broadway onto Meadow Hill and over the bridge that crosses Wilson creek, the actual meadow hill seemed to boom into view, the snow all reddish from the first few minutes of sun, the bare trees pointing straight up toward Klos’s house. I smiled and laughed out loud. In a minute I was home and watching the rest of the sunrise from the east windows. In just a few weeks I can check to see if I have Dave’s spring equinox marker placed correctly, but more on that later.
To return to the leg problem, I had to have a physical. So I made an appointment to see Mark. After the usual how are you doing bit of talk—Mark is great about that; he makes you feel welcome all the while he is probing to see what is on your mind, we went through the perfunctory physical, which as I recall mostly amounted to looking in my ears and throat and checking glands for swelling. Then he said I needed a standard blood test, and I suggested off the top of my head, that we do a cholesterol and a psa test. At the time I didn’t even know what psa stood for, only that I should have one regularly and I hadn’t for a while. He demurred. I really didn’t need them. But I must have insisted because he said yes.
I don’t remember what the cholesterol reading was. I have the letter, I could check, but the psa (prostate specific antigens, as I learned at my post-surgery exam with Dr. Sershon) had jumped from in the 3s for the past several years to over 5. In the letter he explained that if psa goes over 5, he wanted me to see a urologist. I got the letter on xxxxx. On xxxx I had an appointment to see Dr. Heth, a urologist who is the head of urology at Luther Hospital in Eau Claire, and who comes to Red Cedar Medical Clinic several times a week. We talked briefly. He was very definite. He wanted to perform a biopsy.
I was taken back a bit. I remember that I agreed readily—what else could I do? But I felt that it would come to nothing. I have had blood in my urine for the past 30 years and I have had two cystoscopies, both of which showed that I didn’t have prostate cancer and I figured that this would be the same.
The biopsy procedure took place on xxxx. It lasted about an hour as I recall and after I went home, took the rest of the day off. For the procedure first they perform an ultrasound on the prostate. That was easy. You lie there and they smear some goo on you and run the reader around so that they get a picture. He explained why they needed to do that, but, to be honest, I forget what he said. He showed me the ultrasound and pointed out various of my internal organs, but they all looked like blobs to me.
Then came the actual collection of material for the biopsy. They inserted a cylinder of some sort, I never saw it, up my anus about 6 inches I think, a ways. Then came the collection. 12 times 6 times up the right side and 6 times up the left side the cylinder sent a needle through my intestinal wall and into my prostate. I gotta say, that was the proverbial pain in the ass. The doctor kept talking and made jokes about he was going to give me more pain than I had ever had—which actually it wasn’t, since it had been anesthetized, but it was like getting hit solidly, as if there were a tough mean person up my ass punching me. The nurse watched the whole time and I guess helped but I was pretty focused on the next slam. Finally it was over. They removed the cylinder, told me I could get dressed and go home. They would call me when they got the pathology report.
The doctor left and I got dressed, then the nurse explained that they would call me by xxx. And she let drop something that I actually wish she wouldn’t have. It helped me later, but I had to lie to my family. She told me that if she called, it almost always meant that the biopsy was benign, but if he called, it probably meant there was a tumor and that he would ask me to come in to see him. He had repeated several times, rather to my annoyance, that I could bring anyone to the consultation that I wished, including a long list of relatives and my lawyer. Ha Ha. I left and went home where inspite off myself, I waited for the phone call.
After this procedure I had a lot of bloody urinations. They went on for about 10 days. No matter how much they tell you it will happen, the sight of blood emerging from my penis set me back a bit. I tried to be matter of fact, sort of well that’s what happens, but I wasn’t quite as blasé as I acted.
Then started an annoying game of phone tag, one that I knew the meaning of, but that my wife and children didn’t. They got furious on my account as the weekend wore on. Jane said she had some guys in school who could ‘make some trouble’ and Clare allowed that she knew guys who broke knees. I repeated these jokes to Mark later, and it was clear he didn’t think that they were funny at all. I quit repeating those lines. And haven’t repeated them until now.
The Prostate Cancer Journal.
2-19-08
On Sunday I tried for the first time to deal with my erectile dysfunction. I looked at some kinky photos, felt my cock stiffen a little, like what are now the old days, so I tried to stroke it to see if I could spring a hardon. Know what happened? I pissed into my Depends. Well, I got a good laugh, changed Depends, fortunately I didn’t wet the pants so I could keep wearing them, and changed plans. I started to work on a sudoku. I have prostate cancer. This is my story. I hope it is candid and funny. What can you do but look this kind of thing straight on and flip it the bird?
I should have kept a journal, but I didn’t so I am writing from memory, though it hasn’t been all that long. In July Mary and I went to Australia, 15 hours over and 15 more back. In late July we were supposed to go to Yoho Park to hike at Lake O’Hara, and climb up to Emerald Glacier and touch the ice. We would stay in Field, eat at the xxx, and hike the
Rockies. Then we would go to Glacier and cross Siyeh pass, one of my favorite places in the world, right up there with the little slough at Upper Whitefish Lake. Well, it’s a three-day drive and we had already done one three-day drive in May when we came home from our semester in Houston where I was a visiting professor at Rice University. Well the upshot was we didn’t want to do the drive. We cancelled—I hated doing that, and decided to attend the wedding of my brother’s grandson.
So off we went to Waukesha. The wedding was lots of fun. We got there a day early and Mike and Joanne arranged for us to tour Ten Chimneys, one of the homes of Alfred Lunt and Lynne Fontaine, both of whom my mother knew because she was the administrative assistant for Dr. Earl Schulz and they were his patients in their old age. The tour was wonderful. Then the next day we did the wedding, which was held in Frame Park, much more lovely now than when I mowed its meadows in the 60s for the Waukesha Parks and Recreation Department. One summer riding up and down those lawns I memorized all the presidents, all the kings of England and of France, and even started on the Popes. Well, as I sat there at the wedding I could remember none of them, at least not any long strings. To know that Henry V followed Henry IV seems like not much of a prodigious feat of memory. Any way Tim and ssss were married. I was so impressed with his attitude during the ceremony and the rest of the evening. Unlike the surly teenager he was (I recognized the type; I was one too), he was young, confident, and pleased.
Finally the meal was over and it was time to dance. Years ago for Susan Palmer’s wedding to Doug Wardell Mary and I had taken dance lessons and I had learned to keep time to triple-time music and over the years I had learned a number of arm/body moves. So when the dancing started, I was out there having a ball. Mike’s nieces were also dancing and having a good time, so I grabbed them and swung them around and they caught on fast and we had a good time swinging. I was showing off and loved it. Then I felt a pop in my knee. I knew I had done something bad to it. I was right. The next day I could hardly move it. Mary drove us home. In the emergency room they told me I had a torn meniscus and would need surgery. I had never heard of meniscus and had never had surgery. I scheduled an appointment with the local xxx and he confirmed the diagnosis. The meniscus was torn, I needed it surgically repaired, and before I could do that I needed to have a physical from my GP, Mark Svendson. And that is what started my prostate cancer saga.
2-20
It was ten below when I got up this morning and the sun had filled the horizon with that wonderful pre-dawn pink. I showered, dressed. Today I tried a button shirt and belted slacks for the first time in several weeks. My stomach has gone down and the slacks are finally comfortable. After the surgery the stomach distended and I couldn’t get into my 36” waist slacks even though I lost five pounds in the surgery, from 198 to 193. Speaking of my stomach, I have six incisions, the longest one from my belly button straight up for about an inch or so, three on the right side and two on the far left. I am not sure which one the prostate came out of. Right now the scabs are beginning to pull away and they are almost impossible to not play with. At any rate when I went to get the paper up at Cut Rite, where I can get it for 25 cents rather than 50 cents at MarketPlace, why I don’t know, the sun was just rising, roughly 7:05. As I came off Broadway onto Meadow Hill and over the bridge that crosses Wilson creek, the actual meadow hill seemed to boom into view, the snow all reddish from the first few minutes of sun, the bare trees pointing straight up toward Klos’s house. I smiled and laughed out loud. In a minute I was home and watching the rest of the sunrise from the east windows. In just a few weeks I can check to see if I have Dave’s spring equinox marker placed correctly, but more on that later.
To return to the leg problem, I had to have a physical. So I made an appointment to see Mark. After the usual how are you doing bit of talk—Mark is great about that; he makes you feel welcome all the while he is probing to see what is on your mind, we went through the perfunctory physical, which as I recall mostly amounted to looking in my ears and throat and checking glands for swelling. Then he said I needed a standard blood test, and I suggested off the top of my head, that we do a cholesterol and a psa test. At the time I didn’t even know what psa stood for, only that I should have one regularly and I hadn’t for a while. He demurred. I really didn’t need them. But I must have insisted because he said yes.
I don’t remember what the cholesterol reading was. I have the letter, I could check, but the psa (prostate specific antigens, as I learned at my post-surgery exam with Dr. Sershon) had jumped from in the 3s for the past several years to over 5. In the letter he explained that if psa goes over 5, he wanted me to see a urologist. I got the letter on xxxxx. On xxxx I had an appointment to see Dr. Heth, a urologist who is the head of urology at Luther Hospital in Eau Claire, and who comes to Red Cedar Medical Clinic several times a week. We talked briefly. He was very definite. He wanted to perform a biopsy.
I was taken back a bit. I remember that I agreed readily—what else could I do? But I felt that it would come to nothing. I have had blood in my urine for the past 30 years and I have had two cystoscopies, both of which showed that I didn’t have prostate cancer and I figured that this would be the same.
The biopsy procedure took place on xxxx. It lasted about an hour as I recall and after I went home, took the rest of the day off. For the procedure first they perform an ultrasound on the prostate. That was easy. You lie there and they smear some goo on you and run the reader around so that they get a picture. He explained why they needed to do that, but, to be honest, I forget what he said. He showed me the ultrasound and pointed out various of my internal organs, but they all looked like blobs to me.
Then came the actual collection of material for the biopsy. They inserted a cylinder of some sort, I never saw it, up my anus about 6 inches I think, a ways. Then came the collection. 12 times 6 times up the right side and 6 times up the left side the cylinder sent a needle through my intestinal wall and into my prostate. I gotta say, that was the proverbial pain in the ass. The doctor kept talking and made jokes about he was going to give me more pain than I had ever had—which actually it wasn’t, since it had been anesthetized, but it was like getting hit solidly, as if there were a tough mean person up my ass punching me. The nurse watched the whole time and I guess helped but I was pretty focused on the next slam. Finally it was over. They removed the cylinder, told me I could get dressed and go home. They would call me when they got the pathology report.
The doctor left and I got dressed, then the nurse explained that they would call me by xxx. And she let drop something that I actually wish she wouldn’t have. It helped me later, but I had to lie to my family. She told me that if she called, it almost always meant that the biopsy was benign, but if he called, it probably meant there was a tumor and that he would ask me to come in to see him. He had repeated several times, rather to my annoyance, that I could bring anyone to the consultation that I wished, including a long list of relatives and my lawyer. Ha Ha. I left and went home where inspite off myself, I waited for the phone call.
After this procedure I had a lot of bloody urinations. They went on for about 10 days. No matter how much they tell you it will happen, the sight of blood emerging from my penis set me back a bit. I tried to be matter of fact, sort of well that’s what happens, but I wasn’t quite as blasé as I acted.
Then started an annoying game of phone tag, one that I knew the meaning of, but that my wife and children didn’t. They got furious on my account as the weekend wore on. Jane said she had some guys in school who could ‘make some trouble’ and Clare allowed that she knew guys who broke knees. I repeated these jokes to Mark later, and it was clear he didn’t think that they were funny at all. I quit repeating those lines. And haven’t repeated them until now.
The first email to announce my cancer and an email response
Annie is Mary's sister. There are more emails from people and I might load them all up. The support, the rallying that occurs is one of the curiously wonderful gifts of cancer.
Dear Mary and Dan,
I just read your emails, AFTER I had called you. So now I can worry about whether or not I sounded callous on the phone........
I am sorry to hear this news but grateful for its early detection and for both of your upbeat attitudes. And now Ray and Dan can bond! Interestingly, I was talking to two men at whole Foods yesterday, both in their 60s, both with prostate cancer who are just letting it be. I don't know if that is on their doctor's advice or their own desires, or if at some point they will need to have it treated. Their feeling is that every man will get it if he doesn't die of something else first and that MAN was never intended to live this long. Poor planning on "someone's" part, I say. It reminds me of one of my favorite sayings: "If you're born to hang, you'll never drown; so let the big cat jump."
I don't know what all I am meaning with the above, but do know that I am, right now, holding a good thought for you both. And right back at you with the hug Dan.
Love,
annie
"Riordan, Mary" wrote:
Good morning,
Dan summarizes his situation below--his prostate ic cancerous so we will deal with the next step. We will be fine; we have coped with stuff before and we will cope again.
The doctor, as Dan notes below, called this morning at 7:30. I was still asleep so Dan had some time to process it before I came downstairs. We have an appointment to talk to the doctor on Wednesday at 3, and we will send another email update then. I am glad, in a way, the the doctor's office screwed up the communication because this way, I was here and not a plane flight away. The nurse who called to set up the consultation apologized three times for the mess-up.
Look at it this way--this is caught early because I didn't feel ready to hike so we stayed home and went to Michael Riordan's wedding where Dan danced too much and hurt his knee and had to have an operation and had to have a pre-op physical before the operation so Dr. Svendsen noted the elevated PSA and sent him to the urologist. I see that chain of events as most fortuitous.
Love,M
-----Original Message-----
From: Dan Riordan [mailto:riordand@uwstout.edu]
Sent: Mon 10/22/2007 8:30 AM
Subject: Urology report
Hi, well, my prostate is cancerous. Well, shit. Or, I suppose, better, well
piss.
The urologist called this morning at 7:30 (he apologized for the mess up on
Friday). The cancer is in basically low and early stages. The therapy,
whatever it is, would not begin before the first week of December. That is
about all he said. Understandably, and acceptably to me, he does not want
to go into detail over the phone;rather he wants to do it face-to-face when
there is enough time to explain things in detail, even with, he assured me,
visual aids. This will happen on Wednesday of this week. When we know more
I will let you know.
I am off to work. Sensing that this was coming I spent all day Saturday
giving out grades and finishing off a huge amount of work so that I do not
have to go into 'evaluation mode' today.
Thanks for all the phone calls and emails.
I love you all. And here's a hug.
Dan
Dear Mary and Dan,
I just read your emails, AFTER I had called you. So now I can worry about whether or not I sounded callous on the phone........
I am sorry to hear this news but grateful for its early detection and for both of your upbeat attitudes. And now Ray and Dan can bond! Interestingly, I was talking to two men at whole Foods yesterday, both in their 60s, both with prostate cancer who are just letting it be. I don't know if that is on their doctor's advice or their own desires, or if at some point they will need to have it treated. Their feeling is that every man will get it if he doesn't die of something else first and that MAN was never intended to live this long. Poor planning on "someone's" part, I say. It reminds me of one of my favorite sayings: "If you're born to hang, you'll never drown; so let the big cat jump."
I don't know what all I am meaning with the above, but do know that I am, right now, holding a good thought for you both. And right back at you with the hug Dan.
Love,
annie
"Riordan, Mary"
Good morning,
Dan summarizes his situation below--his prostate ic cancerous so we will deal with the next step. We will be fine; we have coped with stuff before and we will cope again.
The doctor, as Dan notes below, called this morning at 7:30. I was still asleep so Dan had some time to process it before I came downstairs. We have an appointment to talk to the doctor on Wednesday at 3, and we will send another email update then. I am glad, in a way, the the doctor's office screwed up the communication because this way, I was here and not a plane flight away. The nurse who called to set up the consultation apologized three times for the mess-up.
Look at it this way--this is caught early because I didn't feel ready to hike so we stayed home and went to Michael Riordan's wedding where Dan danced too much and hurt his knee and had to have an operation and had to have a pre-op physical before the operation so Dr. Svendsen noted the elevated PSA and sent him to the urologist. I see that chain of events as most fortuitous.
Love,M
-----Original Message-----
From: Dan Riordan [mailto:riordand@uwstout.edu]
Sent: Mon 10/22/2007 8:30 AM
Subject: Urology report
Hi, well, my prostate is cancerous. Well, shit. Or, I suppose, better, well
piss.
The urologist called this morning at 7:30 (he apologized for the mess up on
Friday). The cancer is in basically low and early stages. The therapy,
whatever it is, would not begin before the first week of December. That is
about all he said. Understandably, and acceptably to me, he does not want
to go into detail over the phone;rather he wants to do it face-to-face when
there is enough time to explain things in detail, even with, he assured me,
visual aids. This will happen on Wednesday of this week. When we know more
I will let you know.
I am off to work. Sensing that this was coming I spent all day Saturday
giving out grades and finishing off a huge amount of work so that I do not
have to go into 'evaluation mode' today.
Thanks for all the phone calls and emails.
I love you all. And here's a hug.
Dan
Introduction to My Prostate Journey
I was diagnosed with Prostate Cancer in October 2007. This blog presents my reflections on the journey as I am living it. I hope that my description of the events and emotions of coping with this disease are helpful.
Subscribe to:
Posts (Atom)
Posts
