Addendum, written on Feb 25.
I never published the November 4 piece of writing until now. It was a shock. You can see what I finally published in the email to family and friends. I waited until I knew more and then spoke from facts not fantasies. I publish the my November writing so that you have some idea that this affliction cannot be ignored.
As it turned out it took a loooong week until I finally heard from the doctor. He told me that the PSA had gone up, that what he was doing was giving me a heads up that if it stayed up, I would probably need a different treatment. We did not talk about end of life issues. I have thought about them, though, as you can imagine. The only thing I know to keep your sanity as this thing dwells in you is to look at it clearly. Don't flinch. Don't look away. It is not going away.
November 4, 2013
Well, what a hell of a day. First, I take off for my CVLR photo class. It goes well. I have the pace correct for the audience. I take them through steps that I am astounded they can’t do, like find macro. During the class, my phone rings. I make a joke about never calling me at this number and go on. The class is a blast. I love it. The technology worked well. The students appeared to get the processes. I leave feeling great, even though it has rained all morning.
At home Mary has had a fine workout. I check the phone to see who called me. I don’t recognize the 651 number. But there is a voice mail. A man. My urologist. His message is ridiculously brief. “Is there a better number to call me at? “ I call back, go through a zillion pick-this-number items.
All I end up with is his voice mail. I leave a message to call me back. And then I wait, and have waited all day.
I had my psa taken on Friday. This is Monday morning. Urologists don’t call to tell you “My that was a fine test.” The nurse does that. Urologists call because there is an issue, and in this case the issue surely is not good. On Sunday I had odd shooting pains down the left side of my penis. Today I have had ones on the right side and a bit in that right testicle. During the summer and fall I often felt really tired when I woke up, even if I had slept for 8-9 hours. What is the deal?
I spent the afternoon sending a few emails, playing solitaire, working on some camera and Photoshop Elements 12 processes. It is amazing how slow the time can pass. I avoid Mary. She tries to act like she has lots of jobs to do, and, well, she does them, working on her letters. Good.
I am trying to think what might need to be arranged. A funeral service. Money items. What to do with the house. What to do with all the junk I have collected—tools, furniture, books, photos. I want someone to publish a book of my photos. In the end my goal is to show others how to die. But, to be honest, I would rather do that in several years. I feel great about 2013 and tell Mary. She agrees. I am in a position right now where I am not regretting what I have done with my life and my years. I like where I am.
Here it is, 8:47. He will call tomorrow I am sure, not tonight. Happy 3 a.m.
February 25, 2014
Time passed. I am at ease with the many possibilities that lie ahead. What you find out when you have this disease is that you can’t live with fear and you can’t stop living. God, is that neat.
But in December I had a physical from my GP. He suggested that I eliminate all dairy from my diet, so I have. Dairy products contain casein, a protein that prostate cancer “feeds on” (not sure exactly what that means other than if there is more casein in your body, the cancer finds it easier to grow and metastasize). I have eliminated dairy. I drink soy milk, eat (very little) fake cheese and ice cream. Milk was easy to give up. Cheese was harder. I have learned to read the ingredients lists on food products. I am amazed at how many products contain dairy. My family and friends have been very supportive in adjusting their food selection when I am present. My neighbor has had prostate cancer for about 15 years. He works hard at his diet. Diet, it turns out, can have an impact on how quickly the cancer grows.
I decided to take the doctor’s advice.
I am having and have had a good winter. We thought of a month in Italy, especially in the south in Puglia, the heel of the Italian boot. I decided against it. It felt like running away to me. So we have stayed here. I have rather enjoyed the harsh winter. I have started to teach myself German, I have spent lots of time tracking my ggggrandfather Jacob Weber, I will give a talk on that process on March 15. I started a photographers’ group—we meet once a month to critique photos. The owner of the restaurant we meet at has invited us to put up an exhibit of our works; that happens in mid-April. My own show of photos will be up throughout March at the Menomonie Coop. I have written another article about genealogy, and I have a series of drafts exploring the nature of questioning in teaching. We have snow shoed. We have had many dinner guests. We had a spectacular Christmas get together. The grandkids have stayed here. Jane spent a great weekend here. I have gone back to regular rock climbing.
We try to work out three times a week. Those workouts have been wonderful for things like balance and confidence lifting. Just past week I slipped on some ice, but caught myself so I did not fall. I suspect I would have done a header two years ago. I helped Mary put on a very successful Martin Luther King event based on his idea of community and the work of her students from her creative writing class in the Dunn County Jail. We have been to a number of cultural events here in Menomonie and in the Twin Cities, including not only “The Ballad of Emmet Till” but also a small event featuring the playwright, several of the actors and the director of Penumbra theater. What we have done the past few months feels so right, so good. Many years ago a friend wondered if we had been smart enough to immerse ourselves in the joys of the moment. I am not sure about then, but I know I do now. What a great gift.
And so, that brings you up to date. I go to the urologist on Thursday, March 6. My new PSA will be posted probably the next day or else by the following Monday. I decided not to wait for a phone call. They are willing to just post the numbers and you deal with what you see. I am fine with that. Rather that than the voice on the line being the doctor and me knowing we are not having a ‘hey-how-ya-doin’-call.’
Tuesday, February 25, 2014
A turn of events in the cancer fight
In November 2013 I received a bit of sobering news, though not entirely unexpected. My cancer is acting up.
Here is the email I sent to family and friends: Hi, I sent this email to my kids earlier today. Here is your copy. What can I say? What is, is. Share with your kids. Thanks for all your support. If you want to talk about it, please ask. You are great, Love, Dan Hi, I had my PSA drawn on November 1. On November 11, Dr. Sershon called me to tell me that the number had jumped. He did not tell me the new number. I can get it in the next few days. It was my choice. The old numbers had always been below.2, or "undetectable". Well. He said he will watch the number at my next PSA draw in March. If it stays up, I will be referred to his associate for further treatment because it probably means there is a clump of cancer in there somewhere. Which of course I already know: The cancer has never gone away completely; that's why the PSA never went to 0. Sershon also explained that the number could go back down, that PSA related to lupron treatments sometimes jumps and goes back. So there is nothing to do but wait to see.
Just to be clear, Sershon is a pretty blunt guy. No mention of "affairs in order" or "bucket list." And I have no such intentions, though a month in Europe sounds good. The last thing he said to me was "Have a good winter," which is exactly what I plan to do.
Please know that I am not afraid nor am I worried. Look at these things head on and don't flinch. I refuse to allow these facts to affect the way I live in the now. And living now means that I am deeply in love with you all and your children, and that I know what that means at a very deep level, and that it is a lot of fun, making for a very fine way to get up in the morning. So, a bit sobering, but having cancer is a bit sobering. Hug, laugh, dance, call me, try new things (I am working, after years of ignoring it, to learn flash photography. I just bought a nice external flash. Tomorrow I can get back to rock climbing. Today I checked out cork flooring for the kitchen.) God it is great to be on the same team as you guys.
Love, Dan, Dad, Doc
Here is the email I sent to family and friends: Hi, I sent this email to my kids earlier today. Here is your copy. What can I say? What is, is. Share with your kids. Thanks for all your support. If you want to talk about it, please ask. You are great, Love, Dan Hi, I had my PSA drawn on November 1. On November 11, Dr. Sershon called me to tell me that the number had jumped. He did not tell me the new number. I can get it in the next few days. It was my choice. The old numbers had always been below.2, or "undetectable". Well. He said he will watch the number at my next PSA draw in March. If it stays up, I will be referred to his associate for further treatment because it probably means there is a clump of cancer in there somewhere. Which of course I already know: The cancer has never gone away completely; that's why the PSA never went to 0. Sershon also explained that the number could go back down, that PSA related to lupron treatments sometimes jumps and goes back. So there is nothing to do but wait to see.
Just to be clear, Sershon is a pretty blunt guy. No mention of "affairs in order" or "bucket list." And I have no such intentions, though a month in Europe sounds good. The last thing he said to me was "Have a good winter," which is exactly what I plan to do.
Please know that I am not afraid nor am I worried. Look at these things head on and don't flinch. I refuse to allow these facts to affect the way I live in the now. And living now means that I am deeply in love with you all and your children, and that I know what that means at a very deep level, and that it is a lot of fun, making for a very fine way to get up in the morning. So, a bit sobering, but having cancer is a bit sobering. Hug, laugh, dance, call me, try new things (I am working, after years of ignoring it, to learn flash photography. I just bought a nice external flash. Tomorrow I can get back to rock climbing. Today I checked out cork flooring for the kitchen.) God it is great to be on the same team as you guys.
Love, Dan, Dad, Doc
Saturday, February 11, 2012
February 2012, Cancer is back
Well, that title seems scary, so let me explain. There is good news and bad news. The bad—I still have cancer. The good—it is controllable with no imminent danger.
There, that said, let me explain. First, the cancer. Ever since I ended my radiation treatments, my PSA has been slowly rising. The most recent number (in January 2012) was .29; the time before it was .19. In PSA terms, for people with my cancer history, .20 is the magic number. Below it and no one does anything, above it and they do. Because the number is now above .20 all my doctors (urologist and radiologist and gp) have concluded that radiation did not kill all the cancer cells and that some small amount of cancer cells are still present. And because of the characteristics of my cancer that small amount will have to be controlled or it could metastasize. By characteristics I mean that my cancer was graded as Gleason 9 (out of 10). That number puts my type of cancer in the aggressive category and explains why I have had PSA tests performed every three months. My doctors have been watching closely.
Second, the treatment. Eventually, probably later this year, I will begin a two-year course of treatment called “Intermittent Hormone Therapy.” In that therapy I am injected with Lupron, an estrogen, three times a year for two years. Then there is a year with no injections and then the cycle repeats. Lupron dramatically suppresses testosterone which is one of the “feeders” of prostate cancer. The less T, the less C. The potential side effects are hot flashes, loss of strength and sexual drive, and a dramatic increase in the desire to watch chick flicks.
My urologist is a man I trust completely. He is blunt (one of his quotes at opur recent meeting was ‘that sucks’), clear, and ethical. He walked into our session having obviously closely reviewed my case. He had numbers and dates on the tip of his tongue. He is very clear that I am in no imminent danger and his prognosis was that I would be around a long time. However, all individual cases of cancer are unpredictable and thus something could happen that would cause him to revise his optimism. I’ll cross that bridge when I get to it.
I am happy to have the explanation that I received this morning. Knowledge is a source of strength and of courage against the fear that always accompanies the word cancer. As I have said many times before I am not worried and I am not afraid (I was both quite a few years ago when there was a diagnosis that said I had a good chance of going blind—which I don’t.) Thank you, once again for your support. Hug people you love, and tell them that too.
There, that said, let me explain. First, the cancer. Ever since I ended my radiation treatments, my PSA has been slowly rising. The most recent number (in January 2012) was .29; the time before it was .19. In PSA terms, for people with my cancer history, .20 is the magic number. Below it and no one does anything, above it and they do. Because the number is now above .20 all my doctors (urologist and radiologist and gp) have concluded that radiation did not kill all the cancer cells and that some small amount of cancer cells are still present. And because of the characteristics of my cancer that small amount will have to be controlled or it could metastasize. By characteristics I mean that my cancer was graded as Gleason 9 (out of 10). That number puts my type of cancer in the aggressive category and explains why I have had PSA tests performed every three months. My doctors have been watching closely.
Second, the treatment. Eventually, probably later this year, I will begin a two-year course of treatment called “Intermittent Hormone Therapy.” In that therapy I am injected with Lupron, an estrogen, three times a year for two years. Then there is a year with no injections and then the cycle repeats. Lupron dramatically suppresses testosterone which is one of the “feeders” of prostate cancer. The less T, the less C. The potential side effects are hot flashes, loss of strength and sexual drive, and a dramatic increase in the desire to watch chick flicks.
My urologist is a man I trust completely. He is blunt (one of his quotes at opur recent meeting was ‘that sucks’), clear, and ethical. He walked into our session having obviously closely reviewed my case. He had numbers and dates on the tip of his tongue. He is very clear that I am in no imminent danger and his prognosis was that I would be around a long time. However, all individual cases of cancer are unpredictable and thus something could happen that would cause him to revise his optimism. I’ll cross that bridge when I get to it.
I am happy to have the explanation that I received this morning. Knowledge is a source of strength and of courage against the fear that always accompanies the word cancer. As I have said many times before I am not worried and I am not afraid (I was both quite a few years ago when there was a diagnosis that said I had a good chance of going blind—which I don’t.) Thank you, once again for your support. Hug people you love, and tell them that too.
Friday, April 29, 2011
April 2011 A change
I just this week met with my radiologist. He suggested that I see him again in January. I will see my urologist in July and, the radiologist suggested, I should arrange to see him in July 2012. I was amazed. And, somehow, a lid was lifted off me. I feel better than I have in years. I am not afraid, but, still, there is that awful, well-you-are-good-for-three-months feeling. I have had it the entire time. Each time I go for a psa I fill with concern. What if it really spikes? Then what? Propelled by that, well, fear, or awareness, I have crammed a lot into this past year. We have travelled, I have delved deep into family genealogy, spent as much time as I can with family and especially grandkids, and learned to love each moment.
Here is the deal. My psa has slowly, very incrementally risen over the past year. I am now at .1. The cut off is .2. At that point they can no longer say, Well it is random. At that point it is Well it is back. So each time I go to the psa and hope it will be lower and it has not been. Each time I fantasize about the consequences. And now the radiologist, who strikes me as conservative in his evaluations, has said, Let's go to 6 month intervals instead of three month. I floated out of the office.
I have had the stance throughout this ordeal that I keep having a three-month reprieve. Nothing notable this time, so off you go for another three months. My urologist has used the phrase 'cancer free' with me, but, to be honest, I could only interpret that as 'cancer free for 3 months.' This last encounter has left me basically very uplifted. I am surprised at how all of a sudden I am thinking far in advance--which means what we might do next year--and not focusing on what today and the next few days.
I find, as I have said before, that I am not worried or afraid. What is, is. I know fear and I know its relative anger. I don't have them. I can face this. But I have to tell you that it is ok to face it later, rather than sooner. I want, I find, so desperately to have my grandchildren remember me. And this disease has pushed me into a way of relating to those kids unlike the way either my father or father-in-law related to my kids. I try to be more involved and personal.
And so, off I go into the summer. I still have July's psa to deal with, but whatever it is, will be fine. Over and over I learn the gift of cancer--I love better and I enjoy more. Love you. D
Here is the deal. My psa has slowly, very incrementally risen over the past year. I am now at .1. The cut off is .2. At that point they can no longer say, Well it is random. At that point it is Well it is back. So each time I go to the psa and hope it will be lower and it has not been. Each time I fantasize about the consequences. And now the radiologist, who strikes me as conservative in his evaluations, has said, Let's go to 6 month intervals instead of three month. I floated out of the office.
I have had the stance throughout this ordeal that I keep having a three-month reprieve. Nothing notable this time, so off you go for another three months. My urologist has used the phrase 'cancer free' with me, but, to be honest, I could only interpret that as 'cancer free for 3 months.' This last encounter has left me basically very uplifted. I am surprised at how all of a sudden I am thinking far in advance--which means what we might do next year--and not focusing on what today and the next few days.
I find, as I have said before, that I am not worried or afraid. What is, is. I know fear and I know its relative anger. I don't have them. I can face this. But I have to tell you that it is ok to face it later, rather than sooner. I want, I find, so desperately to have my grandchildren remember me. And this disease has pushed me into a way of relating to those kids unlike the way either my father or father-in-law related to my kids. I try to be more involved and personal.
And so, off I go into the summer. I still have July's psa to deal with, but whatever it is, will be fine. Over and over I learn the gift of cancer--I love better and I enjoy more. Love you. D
Sunday, May 23, 2010
May 2010 the decline continues
This month my psa was drawn again. It is .036. It has dropped minimally since my February psa analysis. That decline continues to be good news. I will have to see my urologist in August, after that draw.
This lower psa makes me glad that I have chosen to retire. Even though I am fascinated by the process of changing a culture and have some success at it, the window of health presented by the numbers make it foolish to not go now. I am looking at the Travel section and the travel magazines with new impulsive attention. I plan to take some of those trips, but in the US and in Canada (Newfoundland) and abroad (Norway).
In addition, the lasting effects of my battle are weight that I am having trouble losing. I have been at 205 or so for months. Hopefully exercising after retirement will bring me down to 190. And ed. This condition remains strong (or weak depending on the outlook). I am not sure how to resolve this. Maybe I will return to cialis. But what I have found is that a marriage based on love, respect, and appreciation can accommodate this condition. And, since my wife is such a fine cook, I can live the old adage "Lovin' don't last, cookin' do.
I am looking forward to a summer of biking and some area travel.
This lower psa makes me glad that I have chosen to retire. Even though I am fascinated by the process of changing a culture and have some success at it, the window of health presented by the numbers make it foolish to not go now. I am looking at the Travel section and the travel magazines with new impulsive attention. I plan to take some of those trips, but in the US and in Canada (Newfoundland) and abroad (Norway).
In addition, the lasting effects of my battle are weight that I am having trouble losing. I have been at 205 or so for months. Hopefully exercising after retirement will bring me down to 190. And ed. This condition remains strong (or weak depending on the outlook). I am not sure how to resolve this. Maybe I will return to cialis. But what I have found is that a marriage based on love, respect, and appreciation can accommodate this condition. And, since my wife is such a fine cook, I can live the old adage "Lovin' don't last, cookin' do.
I am looking forward to a summer of biking and some area travel.
Monday, April 19, 2010
Cancer Free for a Year
I originally wrote the following paragraphs in early February 2010.
I just returned from my yearly urologist checkup. I am cancer free. Thanks to you for all your support. It has been so important over the past two years.
Here are the details. My PSA, which I had drawn in early February, was .04. That is ‘undetectable;’ in my condition anything over .2 is worrisome. Since my radiation treatment the psa has never been as high as that. It is also the second time it has gone down, which is the trend my radiologist said to watch for. The meeting with the urologist was very short. He once again told me that I had made the correct set of decisions by doing surgery first and then radiation. Had it happened in the other sequence, apparently things would have been much worse for me, granted the aggressiveness of the cancer. He also told me that had I waited another year, it would have metastasized, much to my long life detriment. So Mike, Joanne, Michael, Danielle, Morgan and Madison, thanks for throwing that/being willing to dance where I wrecked my knee trying to show off. That’s when they found the cancer. Joan, thanks for insisting that I contact Dr. Sershon. Mark, a hug from the heart.
What next? Well, I keep up the psa every three months and see the Dr. again in a year. If I am still cancer free then (you can see with that choice of words why I am not just totally jumping all over the place), the worst is over. In the meantime, I am the ‘didn’t work’ poster boy for Cialis ads—but I have never seen the point of TWO bathtubs out in the woods. The dr told me he could solve that problem by teaching me how to give myself a shot in the appropriate place, but I told him I would let him know.
I just returned from my yearly urologist checkup. I am cancer free. Thanks to you for all your support. It has been so important over the past two years.
Here are the details. My PSA, which I had drawn in early February, was .04. That is ‘undetectable;’ in my condition anything over .2 is worrisome. Since my radiation treatment the psa has never been as high as that. It is also the second time it has gone down, which is the trend my radiologist said to watch for. The meeting with the urologist was very short. He once again told me that I had made the correct set of decisions by doing surgery first and then radiation. Had it happened in the other sequence, apparently things would have been much worse for me, granted the aggressiveness of the cancer. He also told me that had I waited another year, it would have metastasized, much to my long life detriment. So Mike, Joanne, Michael, Danielle, Morgan and Madison, thanks for throwing that/being willing to dance where I wrecked my knee trying to show off. That’s when they found the cancer. Joan, thanks for insisting that I contact Dr. Sershon. Mark, a hug from the heart.
What next? Well, I keep up the psa every three months and see the Dr. again in a year. If I am still cancer free then (you can see with that choice of words why I am not just totally jumping all over the place), the worst is over. In the meantime, I am the ‘didn’t work’ poster boy for Cialis ads—but I have never seen the point of TWO bathtubs out in the woods. The dr told me he could solve that problem by teaching me how to give myself a shot in the appropriate place, but I told him I would let him know.
Wednesday, April 14, 2010
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