Sunday, November 30, 2008

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.

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