Summary Post Seven Years and Counting

I would like to give a summary of where I have been and how I am now with my prostate cancer. I was diagnosed in October 2007. The cancer was initially evaluated as Gleason 6, but, to my surprise, analysis after the operation confirmed that the correct assessment was the more disturbing Gleason 9. I leave it to you to read about Gleason 9. The short version is that the prognosis is no where near as good as for Gleason 6. My prostate was removed in January 2008. In the fall of 2008 my PSA began to rise. I began a course of 40 days of radiation that continued from late November into February 2009. At that point the cancer seemed to go into remission. The PSAs remained low, which is to say below .2. Numbers lower than .2 indicate that you are cancer free.  However the PSA did not stay low. In 2012 (I think) the PSA began to rise again and I began Lupron shots. Those shots, received every four months, successfully drove down the PSA until November 2013 when the numbers began to rise again. Finally in July 2014 the urologist deemed that he had done all he could and told me to see an oncologist. The numbers had quickly risen to about 5.

Then began a series of tests that lasted for weeks. First I had a bone scan. That revealed that I had an abnormality in my hip bone, my iliac crest, an unusual place to have a tumor, he said. But to investigate the abnormality I next had a biopsy of it. It is cancerous, prostate cancer. At the same time I was having blood in my urine regularly, usually just very small clots but some times a red gush, so I went to a new urologist (actually the one who had diagnosed me originally as having Gleason 6 prostate cancer). He decided to conduct a cystoscopy. As a result he decided that the bleeding was caused by lesions from the radiation years ago. He told me not to worry about it as I was not losing enough blood to cause anemia. But he ordered CT scan of my kidneys just to be certain that there was no tumor in them causing the blood. There wasn’t. However, the scan showed that I had something on my liver, possibly cancer, and two other areas, possibly tumors in my abdomen.  My GP intervened, scheduled an ultrasound of the liver which revealed no cancer in the liver. Whew. The two areas were deemed either tumors or scar tissue. In a subsequent evaluation my initial urologist suggested that one of the lumps was probably scar tissue from the operation he conducted on me. However, he felt that the second one, near my rectum, should be investigated to make sure that if it is a tumor it is prostate cancer and not some other cancer.

Off I went to see an oncologist. The oncologist placed me on one of several drugs that are now used to fight people with my condition. The first was casodex. It failed. That means that after three months the PSA continued to increase. In December 2014 I was changed to Dexamethasone, a steroid that he hopes will shrink the tumors or at least retard the growth of the tumors.

At this point, today, as I write, I feel fine. I am not particularly aware that I have cancer. Nothing hurts. I maintain an active exercise life. I work out three times a week at my university gym and I rock climb once a week at my university wall. The exercise won’t cure me but it has put me in shape so that my body is more able to withstand the rigors of the drugs I am taking.  And I like both exercises.

It is common for me and people like me to talk about fighting cancer every day, but right now that is often not true of me. I go on with my activities and I certainly never forget what is growing in my body, but it does not weigh on me.  When I read the report written by onne of the oncologists that I saw in the summer, I found that he used the word “asymptomatic” to describe me. I guess that explains my current ability to go forth a bit blithely with my daily chores. I am not so foolish as to believe that I will continue like this for years, but right now I thoroughly enjoy it and my days.

I do want to discuss being your own advocate. After they found the tumor in my hip bone, I saw two oncologists. They both told me that they would treat my case the same way. As a result I chose the one who is here in Menomonie and is connected to the Mayo health system. I am satisfied with that. I also decided to use my local urologist to evaluate the blood in the urine. In this situation I have had to manage my own care.  The troubling thing was that I never heard from the urologist the results of the CT scan that indicated that I could have liver cancer. I did not find those results until I contacted my GP who relayed them to me. He is the one who set up the ultrasound.  I decided not to return to that urologist. Instead I called my old urologist who is in the Twin Cities area and returned to him to have him evaluate me when the bleeding did not stop. He gave me a thorough exam, including another right-there-in-the-office cystoscopy, assured me that my bleeding was from the radiation lesions, and put me on an antibiotic because that bleeding is sometimes worsened by an infection in the bladder. The antibiotic worked for about three weeks, but today I had some bleeding, both a gush of red and some clots one other time.  We will see.

And now to my physical condition. First, the Lupron has ended my sex life and sex drive. I have been surprised to find that I am ok with that condition. My wife and I are deep friends. Our marriage is much more than time in bed and actually has deepened during the years I have had this disease and the years when the sex ended. But I have another issue—incontinence. While this problem often occurs after surgery, mine did not appear until autumn this year. I wonder if it is related to the tumors. At any rate I do not have incontinence during the day, but do at night. I am amazed at amount of urine my body pumps out of me at night. I wear Depends at night, often changing three or four times, each time the absorbent pad soaked to capacity. I have tried no alcohol, no caffeine, even no liquid after 7 pm. Those courses of action do not deter the bladder. So I have to live with this. I have learned to buy the packages without embarrassment and to tell others—and now you—of my condition. In addition, since the Depends sometimes leak, I have to sleep with absorbent pads under me and some nights I have to change them. But that is better than wetting the sheet and mattress pad and having to do a large unexpected laundry the next morning.

I have also had issues with defecating. I guess the easiest thing to say is that the stools often don’t drop easily into the toilet. So I have a wipe that is rather like wiping a baby’s behind. You don’t just clean the anus of the baby, you also clean the cheeks. That happens to me. Not a lot of fun. I tell you this so you know where I am. I exercise a lot. I eat well. I laugh a lot, and I have new experiences with the toilet part of my life. I would rather not have those experiences, but when I consider the alternative that would end them, I decide I have figure out how to deal with this stuff.

For now that is what I want to leave you with. I have metastatic cancer. It is advanced. I have lived 7 years after a Gleason 9 diagnosis. I am very lucky. The only thing I can say is you have to figure out how to deal with it.  I am delighted to find in my emotional makeup that I can do this. I get on with it. When I wake up in the middle of the night, I worry about the hot water heater, not the tumor. I can’t fix the tumor. All I can do is deal with it, and I hope you can find the way to do that too.

Thank you for reading this. You can go back through this blog to see my recording of my journey and what I felt at each stage of the way.  Good luck with your cancer and your handling of it. If you want to talk to me, please contact me. Whatever I can do.

Dealing with Metastasized Prostate Cancer

My cancer has metastasized. It is now at least in my hip bone, my iliac crest, and it could be two other places, tumors in my stomach and near my rectum.  So I have new realities to live with.  I think that that issue (new realities to live with) is the one that needs comment and certainly keeps me aware of my emotional state.

The deal is this. My PSA in the past year has elevated from below .2 (where you are considered cancer free) to 22. So far doctors have declared that lupron therapy has failed, though I still keep taking it, or rather getting the shot every four months because it is actually suppressing testosterone, one of the feeders of growth of prostate cancer.  In addition my oncologist--I now do not regularly see a urologist; the oncologist focuses on treating tumors. He tried casodex a new drug to manage and slow the spread of the cancer. It failed. So now I am on dexamethasone, a steroid that is supposed to shrink tumors or at least negate their growth. I have a preliminary check up on Feb 17 and he will make a final decision in March. Apparently if it fails, I will go on another drug and if that fails I will start chemo. Lord.

For me all that drug taking and trips to the doctor are not the issue. They are what has to be done.  I have to have facts so I can worry about them, rather than things I make up. For instance I can feel a very hard spot right next to my belly button. I decided that this was one of the tumors. It isn't. It is scar tissue from my operation 7 years ago. Dr. Sershon, the urologist, confirmed that recently.

What is the issue is the "downs." I suppose you could call them the blues, but that seems too beautiful for what I am talking about. At this point I don't feel anything, any pain, that indicates that I have cancer. But I know I have it. And periodically that knowledge not only forces its ways into my awareness but takes out after any attempt to plan. I want to go to Europe in June-July. But the dexamethasone is tested in March. If it fails, and I have to go immediately to chemo (I might not have to, there is yet another new drug out to fight this cancer), then going to Europe is out. I will be here getting IVs every couple weeks. If I dwell on that possibility, the logical answer is Don't make those plans. If you have to cancel a trip to Europe it is a real pain, not too mention a money-loser. So my 'down' self says, "forget all that; get through today."  THAT is what I have to fight. That is basically giving up and I refuse to do it.  It takes a will effort to do that. I have had to learn to roll with that punch and come back.  I am delighted to report that I can do that. I am not always sure why I flip from the downs to some kind of upper. I have come to trust that I will, yet when the down is in, it is difficult.

The second issue here is What is the reality that I have to accept?  When my friends and family heard the word 'tumor' it set off reverberations in them.  I get concerned looks and quiet questions--how ARE you feeling? When I told one good friend that I felt fine, he asked if I was lying. I get questions about why not remove the tumors. Actually I asked the urologist about that wondering if someone could freeze those tumors. He felt that the risk was way too high. If they tried to freeze the one near my rectum they actually could open a hole in the intestinal wall which as you can imagine, would be bad.  I am not sure, though, what I have to accept. There must be a point where the kind of lightness with which I treat the disease is foolish. I just don't know where that point is.  And when I hear plans for things 2 or 3 years out, I admit I think 'Will I be there?'  Not fun.

Mary and I have discussed the end and what she would do after, and those have been rather emotional discussions, and I am glad to have had them, but they don't change the fact that I have to work my way through tomorrow and I have to keep up my ability to plan.

Enough for now. I will add to this train of thought in later posts. For now my advice continues to be Find out the facts of your case and focus on/worry about them. I like my urologist for this because he is so candid. And I like my oncologist because he is so matter of fact. He is in the game to manage this stuff in my body. What I have determined is that I need to create my own team of doctors. They don't appear to realize the need for a team, but now that I have advanced cancer, I do.  More on this in a later post too.

Dealing with fear and worry

I want to talk a bit about worry and fear and fighting. In an earlier post I made it sound pretty dramatic when I compared the action to fighting cold in the arctic. It is a bit different than that.  To be honest, most days I don't think much about cancer but unexpected comments or news stories can suddenly bring the problem into focus. Let me run through various scenarios but first some background.

With this disease I meet a doctor regularly, 3-4 times a year.  Each one of those visits follows a PSA test, or as recently, some medical procedure like a bone scan. In between those visits I live a pretty normal worry/fear life. I worry about children, grandchildren, financial items, politics, but not a whole lot on cancer.  As the time to meet the doctor approaches though, I find myself turning over the possibilities--this time he will tell me all is well, or the end is near, or new treatment is needed, whatever. I run through them all, practicing how I will respond, both to him or her and also to me. During these times it is pretty easy to be crabby and it is then that I have to remind myself to do what I tell everyone to do--look it in the eye. Identify it. Live with the known rather than fear the unknown. Most of the time that approach--my fighting cold in the arctic--works and I get through the time, though it is emotionally uncomfortable.

Other times, though, the cancer pops up out of nowhere. A common one is a plan for the future. I make pretty tentative plans. So for instance my brothers are starting to plan a road trip down the Mississippi, something we have talked about for years and now can do because we are all retired. But when the topic comes up I find myself thinking,Well, sure, but I hope my treatment is such that I can go, or that my health is such that I can do. We are planning a trip to Europe in the spring to visit some relatives and to do some family research and to just look around. Same deal. I don't have any plane or hotel reservations.

Or I have an appointment with the oncologist on December 16 to determine how effective the casodex is. If it is effective, then all goes on as it is. If not, a new treatment will be in store. I don't spend much time worrying about December 16, but when one of those trips comes up, the thought of what might be true on December 16 pops into my mind. I have learned to deal with it, but it is unsettling.

Then today there was a story about a guy who died of cancer. He had an inoperable brain tumor but tried some desperate treatment which led to horrible side effects, so he finally stopped all treatment and then died peacefully 10 months after being diagnosed. One point of the story was that the doctors advised out of giving the greatest sense of hope, even though doctors often do not try the miracle cures. I found that upsetting. I tell my doctors, Tell me what you are thinking, not what the best though improbable hope is. Yet a story like that hangs with me. A urologist called my case "extensive" the other day. I reneged on my mission statement; I didn't ask him what he meant or rather what his comment meant for me. That issue hangs on.  Today I resolved my problem as I worked out. I started on the elliptical and repeatedly brought that story up to myself. Finally the  focus on the activities melted the concern away.

So, battling fear and worry is not a case of the dragons screaming as they attack, it is these quiet unexpected moments where I have to right myself after I am thrown off balance. I hope you can do that too.

Summary of a year

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.

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.

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

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