I think it best to summarize the events of the past year and to talk about my mental/emotional reactions.
In November 2013 I discovered that the lupron was no longer holding the PSA steady and low. At the time the urologist only called me to tell me that and that he would watch it. Well, in March, 4 months later, the PSA had doubled, and then again in July the PSA quintupled. At that point the urologist ordered a bone scan, figuring it would reveal nothing, and then he would start me on a course of action with a specialist in dealing with prostate cancer after lupron is no longer effective. However the bone scan revealed an abnormality in my iliac crest, a bone in my pelvis. A subsequent biopsy revealed that the abnormality was a tumor and it was prostate cancer. As a result I began to see an oncologist who put me on casodex, an adrogen receptor blocker. In December or January I will find out whether this course of medication is working.
In the meantime I have also had blood in my urine. I have now had a cystoscopy which revealed that the blood is the result of effects of the radiation I had a number of years ago. The current prognosis is to do nothing and see what happens.
Dealing with all this has kept me emotionally active. I am not afraid, I am delighted to continue to discover. I know what fear is, and when I look into my soul, it is not there. Frankly, lucky me.
I am not particularly worried, though all this activity is periodically unsettling. I find that working out and rock climbing are wonderful ways to keep focused on the challenges of life. I have also spent time learning German, a slow task, but fun. For what it is worth, I have used the Pimsleur course to work on my ability to speak it and I hope to go to Germany in the spring to tour that wonderful country and try out my new found (semi) skill.
Nevertheless, some of these events have been quite upsetting. In November, after I had my PSA analyzed, the urologist called me on my cell phone while I was teaching a class in photography. I didn't take the call. He left a message informing me that he needed to talk to me. I called back. It took a week for us to connect. The dr never calls. The nurse does. When the dr calls, it is bad news. That week was harrowing. I try to look this stuff in the face and know exactly what it is, but no matter how hard I try, all the bad things leapt to life in my mind. Essentially the concern was, Well, what has to be done to negotiate the end of life? I tried to tell myself that there was no reason to believe that that concern was one I needed to deal with. I had no information. I had to fight those emotions in order to stay calm.
As has happened with everything since, those concerns are not in play and do not need to be. That realization has helped me immensely since. When I finally talked to the doctor, he said the PSA was up and we would watch it until March. "Have a good winter," was his wish to me. I did. Another doctor, my GP, suggested that I give up dairy because that would reduce the amount of animal protein I was ingesting and would increase the amount of estrogen in my system. I tried that too. It was easier to do than I thought it would be, though giving up cheese is hard to do in Wisconsin. I lost about 10 pounds, but the new diet did not reduce my PSA, though perhaps it kept the PSA from going higher.
As the PSA checking dates of March and July approached, I found myself restless, hoping that the PSA would go down, but expecting nothing. It never went down. I have to say that each time I was amazed by the matter-of-fact way I handled the results. I am not sure where that ability came from. I used to be a pretty excitable guy. The other thing I got used to, as July moved into the autumn was the whole sense of hurry up and go slow. I would get a fact, a PSA or a bone scan result, but then while I wanted something done the next day, I had to wait. I was ready to put off a trip to the west coast of take care of grandchildren while their parents were on vacation. I would have the biopsy instead. The urologist said No, take the time out there, then have the procedure. I did and am happy I did but at the time I also thought Well, how serious is this?
Serious it is. It is clear that there is no cure for this disease, at least not in my body. But where I am is managing the stuff. I have said over and over, Look it in the face. I try to do that. I ask how long do I have? No one has said weeks or months. So I go on with all those wonderful people, places and events that I love. We have fixed up our house quite a bit, started to declutter and get rid of stuff. We have travel plans. We had a wonderful summer and autumn at family reunions and visiting friends and family.
Still, it is hard to make long range plans. I always think, What if the next set of tests means I have to cancel plans? Why make them in the first place? That attitude is a tough one to fight. It is easy to say that we will just deal with the next four months and nothing beyond. But that lets the disease win. We have plans for Germany in the spring and a Rocky Mountain hiking vacation in the summer and I hope an upper New York state vacation in the fall.
On it goes. If you are reading this, do what I urge my support group to do--hug those you love, talk about what is important. I hope you will find that cancer, oddly, gives gifts of revealing the support you have and count on, and making each day that much clearer as a good moment in your life.
Wednesday, October 22, 2014
Wednesday, October 15, 2014
October Cancer. Always something
After I had taken casodex for a month, I suddenly had blood and blood clots in my urine. Well, the first time you see that it is unsettling, though like everything else about managing this disease, you toughen up. . It is not as bad as it looks. Probably it is cystitis, an inflammation of the bladder wall caused by radiation. Another test looms.
I once spent time in the Arctic with a fellow who had spent winters there. He told me that up there a person has to learn to fight the cold. It can depress you and make you lethargic, potentially putting you at some risk. I recall the conversation frequently. I am not worried and I am not afraid and I am willing to be candid about my condition, but I fight every day.
Here is the email I sent to my family and support group detailing this new turn:
OCTOBER 14, 2014
Hi, this email contains a bit of graphic detail about my condition but I tried to keep it vague. To bring some people up to date, I started taking casodex in early September. This drug is an androgen receptor blocker. Basically that means that it hampers the ability of cancer cells to connect with the testosterone that they need to expand their presence into various parts of the body. After about a month —hear comes the graphic part—i began to have blood and clots in my urine. This happened three times and does not happen with each urination. The clots are like little black pieces of fiber. No pain associated with their passing. The oncologist suggested I stop taking casodex until we could talk. I did. After our conversation he said that my description of these passings did not sound (or look, I took a picture of one) like the side effect of casodex. He recommended that I begin taking casodex again, which I will do in the morning. I offer these emails with the candor I do because I believe that this disease must be discussed openly so that the fear level it creates is dramatically reduced.
Here is what I sent out earlier to my children:
Hi, today I met with Dr. Basu. My PSA went up slightly in the past month. From 7.3 to 8.2 He is not concerned. He says that if the PSA is going to go down, that will not happen until December or January. He had suggested that I stop using casodex until he could talk to me about the blood in my urine. As it happened, I have a picture of one of the clots in the toilet. After he looked at that and listened to my explanation of the way the bleeding occurred, he told me to go back on the casodex. What he saw and I described is not what casodex does. He then ordered a cystoscopy next week in order to determine whether the blood is coming from the bladder. Some years ago, when I had first had blood, Dr. Sershon investigated, found lesions from the radiation in the bladder, and cauterized them. Dr. Basu wonders whether what I am currently experiencing is a recurrence of lesions, a long range side effect of radiation. I will find out on Wednesday, Oct. 22.
We also discussed whether change of diet will help my immune system enough to impede the progress of the cancer. He was skeptical. He felt that the change could have various positive benefits but for the new diet to make an immune system change, it would need more time, maybe several years.
I also have an ongoing “deal” in my right groin up the side to just below the ribs. It moves around. He wants first to have the urologist determine that nothing in the bladder or kidney is causing it. He is pretty certain that the tumor in the iliac crest is not causing it.
After I meet with the urologist next week, I will write again.
Love,
D
PS. I told the doctor that I have previously taken photos of piles of shit, but this was my first one of a pot of piss. He did me the courtesy of laughing.
I once spent time in the Arctic with a fellow who had spent winters there. He told me that up there a person has to learn to fight the cold. It can depress you and make you lethargic, potentially putting you at some risk. I recall the conversation frequently. I am not worried and I am not afraid and I am willing to be candid about my condition, but I fight every day.
Here is the email I sent to my family and support group detailing this new turn:
OCTOBER 14, 2014
Hi, this email contains a bit of graphic detail about my condition but I tried to keep it vague. To bring some people up to date, I started taking casodex in early September. This drug is an androgen receptor blocker. Basically that means that it hampers the ability of cancer cells to connect with the testosterone that they need to expand their presence into various parts of the body. After about a month —hear comes the graphic part—i began to have blood and clots in my urine. This happened three times and does not happen with each urination. The clots are like little black pieces of fiber. No pain associated with their passing. The oncologist suggested I stop taking casodex until we could talk. I did. After our conversation he said that my description of these passings did not sound (or look, I took a picture of one) like the side effect of casodex. He recommended that I begin taking casodex again, which I will do in the morning. I offer these emails with the candor I do because I believe that this disease must be discussed openly so that the fear level it creates is dramatically reduced.
Here is what I sent out earlier to my children:
Hi, today I met with Dr. Basu. My PSA went up slightly in the past month. From 7.3 to 8.2 He is not concerned. He says that if the PSA is going to go down, that will not happen until December or January. He had suggested that I stop using casodex until he could talk to me about the blood in my urine. As it happened, I have a picture of one of the clots in the toilet. After he looked at that and listened to my explanation of the way the bleeding occurred, he told me to go back on the casodex. What he saw and I described is not what casodex does. He then ordered a cystoscopy next week in order to determine whether the blood is coming from the bladder. Some years ago, when I had first had blood, Dr. Sershon investigated, found lesions from the radiation in the bladder, and cauterized them. Dr. Basu wonders whether what I am currently experiencing is a recurrence of lesions, a long range side effect of radiation. I will find out on Wednesday, Oct. 22.
We also discussed whether change of diet will help my immune system enough to impede the progress of the cancer. He was skeptical. He felt that the change could have various positive benefits but for the new diet to make an immune system change, it would need more time, maybe several years.
I also have an ongoing “deal” in my right groin up the side to just below the ribs. It moves around. He wants first to have the urologist determine that nothing in the bladder or kidney is causing it. He is pretty certain that the tumor in the iliac crest is not causing it.
After I meet with the urologist next week, I will write again.
Love,
D
PS. I told the doctor that I have previously taken photos of piles of shit, but this was my first one of a pot of piss. He did me the courtesy of laughing.
Cancer in my bone. The heavy hitters come out.
These two emails continue my reports to my family as my situation changed.
AUGUST 12, 2014
Hi, the biopsy shows that the tumor in my right hip is prostate cancer. Who told me that is my GP. He will set up a consultation with an oncologist in Eau Claire in September after we return from Seattle.
At this point there is very little more to say. The result is basically what I expected. It is too early to discuss treatment. Most likely it will be chemo, probably spread over the fall, but apparently there are other possibilities. As I say, too soon to discuss. After I talk with my urologist, if there is more to report, I will let you know.
I am not afraid and not worried. This is a management problem. And yesterday I almost reached the top of the route that has befuddled me all summer. Tomorrow I expect to top it. I will bring my climbing shoes to Seattle. We have taken biking back up and I can’t wait to get going on skiing this winter.
Thanks again for your support.
Love,
Dan
SEPTEMBER 4, 2014
Hi all, today we visited the second of two oncologists. He is PJ Flynn of Minnesota Oncology. Yesterday we visited Dr. Sandeep Basu of Luther Mayo Health in Eau Claire. They both recommended the same thing. For convenience we will go with Dr. Basu. Actually Dr. Flynn thought that was what made the most sense.
I will begin tomorrow taking the drug Casodex, once a day. My PSA will be regularly monitored. If the drug works, my PSA will eventually level off and remain more or less at the same level. I should know whether that occurs by December or January. If it works, I will continue to use it. If not, I will move to another drug. Right now chemo is not in my near future.
We were impressed with both doctors. They were thorough and clear. We got basically the same information from both, in all details of treatment prostate cancer of the type that I currently have.
And so, off we go. Another phase. I continue to be neither worried nor afraid. Thanks for your support. Hug those you love. If you have things you want done, do them now. If you have questions, please ask. I think about this stuff enough to have been over all the ground from deep concern to elation. And Dr. Basu told me that rock climbing was an extreme sport. Maybe I can get into the septuagenarian olympics.
Love, Dan
AUGUST 12, 2014
Hi, the biopsy shows that the tumor in my right hip is prostate cancer. Who told me that is my GP. He will set up a consultation with an oncologist in Eau Claire in September after we return from Seattle.
At this point there is very little more to say. The result is basically what I expected. It is too early to discuss treatment. Most likely it will be chemo, probably spread over the fall, but apparently there are other possibilities. As I say, too soon to discuss. After I talk with my urologist, if there is more to report, I will let you know.
I am not afraid and not worried. This is a management problem. And yesterday I almost reached the top of the route that has befuddled me all summer. Tomorrow I expect to top it. I will bring my climbing shoes to Seattle. We have taken biking back up and I can’t wait to get going on skiing this winter.
Thanks again for your support.
Love,
Dan
SEPTEMBER 4, 2014
Hi all, today we visited the second of two oncologists. He is PJ Flynn of Minnesota Oncology. Yesterday we visited Dr. Sandeep Basu of Luther Mayo Health in Eau Claire. They both recommended the same thing. For convenience we will go with Dr. Basu. Actually Dr. Flynn thought that was what made the most sense.
I will begin tomorrow taking the drug Casodex, once a day. My PSA will be regularly monitored. If the drug works, my PSA will eventually level off and remain more or less at the same level. I should know whether that occurs by December or January. If it works, I will continue to use it. If not, I will move to another drug. Right now chemo is not in my near future.
We were impressed with both doctors. They were thorough and clear. We got basically the same information from both, in all details of treatment prostate cancer of the type that I currently have.
And so, off we go. Another phase. I continue to be neither worried nor afraid. Thanks for your support. Hug those you love. If you have things you want done, do them now. If you have questions, please ask. I think about this stuff enough to have been over all the ground from deep concern to elation. And Dr. Basu told me that rock climbing was an extreme sport. Maybe I can get into the septuagenarian olympics.
Love, Dan
July 2014 Things take yet another turn
I sent this series of emails to my family and support system in July
JULY 16, 2014
Hi, here is the report. My PSA went up to 3.5. It had been doubling but this is quintupling (it was .7 before). So what does this mean? First, the doctor said we are not talking months but years in terms of mortality. His concern is what he calls “morbidity” by which he means the cancer gets into my bones and makes my quality of life less stellar. He used the helpful term “rot” my bones (He also told us that he needed to check a few numbers on my screen to make sure he was not talking out his ass. I like this guy and trust him). Based on our visit, I feel really good. I am not worried nor afraid.
This rise does mean that I will have more activity about my numbers.
1. They took a testosterone level blood draw. He expects it will reveal that my testosterone is low. If it is high, he will simply change the medication to see if the change affects the PSA.
2. He ordered a bone scan. I will have that tomorrow morning at Red Cedar. The goal of that scan is to determine whether any cancer is in my bones. He expects that scan to be negative.
So 3. If both tests are negative, I will see a doctor, his partner, who specializes in cases like mine, which are, it turns out, a bit rare. That doctor could order another test that tries to exactly locate the cancer in the body and as a result of that knowledge propose a customized treatment. Dr. Sershon says that there have been remarkable advances in treating prostate cancer and that advances are happening rapidly.
So I guess I will eventually get to try some of that advanced remark ability.
I thank you for your support. This fall it is 7 years since I was diagnosed. I love you. If you have questions, or if your kids or others have questions, please ask. This stuff is on my mind and I don’t mind discussing it. I think that everyone should hear as much as possible about this disease in order to be better prepared to handle it. So, back at it.
I look forward with delight to our reunions in the next 10 days. I have rock climbing to do, and gym workouts, and biking, and traveling, and german to study. And I feel so good knowing you are there and you care. Dan
JULY 29, 2014
Hi, I had the bone scan I mentioned awhile back. The drs were unwilling to draw a conclusion from it. They thought there was a problem with one area of my pelvis. So I had an X-ray. It showed that there is an irregularity in the pelvis at the spot being investigated. So now, sometime in the future, the next several days or weeks or after we return from Seattle, I will have a biopsy of that area. After that there should be some decision about what direction to take for managing the cancer. Lots of hurry up and go slow. Dan
JULY 31, 2014 Hi, I want to bring you up to date on the latest with my condition. I had the tests that I mentioned earlier, testosterone and bone scan. Nothing is resolved yet.
First I had a testosterone suppression test. The results were fine. The lupron is doing that part of its job, suppressing the testosterone.
Then I had a bone scan. Well, there was an area on my pelvis that looked suspicious. So to resolve that I had an X-ray. That X-ray told the drs that something was going on in that area. It has a name like scorosis (sorry, I have not looked it up).
So now on August 5 I will have a biopsy of the area. The results of that biopsy should be back several days later. Depending on what the biopsy reveals, some more action will occur. Whatever that action is, it will not happen, as near as I can tell, until September after we return from Seattle. Actually the urologist suggested I wait until we return to have the biopsy but since I could get in right away, I decided to do the scan now. After that, who knows?
I am amazed at the slowness of this process. I suppose that is a good sign but it has taught me to not expect a clear answer at any particular point. The dr continues to say "years" plural, so that is nice. When I know more, I will let you know. I am still whacking away at German and my rock climbing has hit a plateau that is annoying. So it goes. In the meantime, thanks for your support. It means a lot to me. Tell people you love them.
Dan
JULY 16, 2014
Hi, here is the report. My PSA went up to 3.5. It had been doubling but this is quintupling (it was .7 before). So what does this mean? First, the doctor said we are not talking months but years in terms of mortality. His concern is what he calls “morbidity” by which he means the cancer gets into my bones and makes my quality of life less stellar. He used the helpful term “rot” my bones (He also told us that he needed to check a few numbers on my screen to make sure he was not talking out his ass. I like this guy and trust him). Based on our visit, I feel really good. I am not worried nor afraid.
This rise does mean that I will have more activity about my numbers.
1. They took a testosterone level blood draw. He expects it will reveal that my testosterone is low. If it is high, he will simply change the medication to see if the change affects the PSA.
2. He ordered a bone scan. I will have that tomorrow morning at Red Cedar. The goal of that scan is to determine whether any cancer is in my bones. He expects that scan to be negative.
So 3. If both tests are negative, I will see a doctor, his partner, who specializes in cases like mine, which are, it turns out, a bit rare. That doctor could order another test that tries to exactly locate the cancer in the body and as a result of that knowledge propose a customized treatment. Dr. Sershon says that there have been remarkable advances in treating prostate cancer and that advances are happening rapidly.
So I guess I will eventually get to try some of that advanced remark ability.
I thank you for your support. This fall it is 7 years since I was diagnosed. I love you. If you have questions, or if your kids or others have questions, please ask. This stuff is on my mind and I don’t mind discussing it. I think that everyone should hear as much as possible about this disease in order to be better prepared to handle it. So, back at it.
I look forward with delight to our reunions in the next 10 days. I have rock climbing to do, and gym workouts, and biking, and traveling, and german to study. And I feel so good knowing you are there and you care. Dan
JULY 29, 2014
Hi, I had the bone scan I mentioned awhile back. The drs were unwilling to draw a conclusion from it. They thought there was a problem with one area of my pelvis. So I had an X-ray. It showed that there is an irregularity in the pelvis at the spot being investigated. So now, sometime in the future, the next several days or weeks or after we return from Seattle, I will have a biopsy of that area. After that there should be some decision about what direction to take for managing the cancer. Lots of hurry up and go slow. Dan
JULY 31, 2014 Hi, I want to bring you up to date on the latest with my condition. I had the tests that I mentioned earlier, testosterone and bone scan. Nothing is resolved yet.
First I had a testosterone suppression test. The results were fine. The lupron is doing that part of its job, suppressing the testosterone.
Then I had a bone scan. Well, there was an area on my pelvis that looked suspicious. So to resolve that I had an X-ray. That X-ray told the drs that something was going on in that area. It has a name like scorosis (sorry, I have not looked it up).
So now on August 5 I will have a biopsy of the area. The results of that biopsy should be back several days later. Depending on what the biopsy reveals, some more action will occur. Whatever that action is, it will not happen, as near as I can tell, until September after we return from Seattle. Actually the urologist suggested I wait until we return to have the biopsy but since I could get in right away, I decided to do the scan now. After that, who knows?
I am amazed at the slowness of this process. I suppose that is a good sign but it has taught me to not expect a clear answer at any particular point. The dr continues to say "years" plural, so that is nice. When I know more, I will let you know. I am still whacking away at German and my rock climbing has hit a plateau that is annoying. So it goes. In the meantime, thanks for your support. It means a lot to me. Tell people you love them.
Dan
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