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

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 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