November 4, 2015 A Trip to Mayo

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November 5, 2015

A Trip to Mayo in Rochester

The short version of this report is that my PSA is 79, down from 110 a week ago. The doctors are happy that the number continues to decrease. In addition the blood analysis shows that all my categories are normal. This is a good sign. It indicates that my body is responding well to the chemo treatment.  I have had a lump next to my navel which has been the source of some disagreement. Several doctors think it is scar tissue from my prostatectomy in 2008; others think it is a tumor.  In order to clarify the situation, we will return to Mayo on Thursday November 12 so that they can biopsy the lump on November 13. More on that when the report comes in.

It was a long tiring, satisfactory day at Mayo. We drove down on Monday November 2, spent all of the 3rd running around the complex and came home on November 4.

On the 2nd I was checked in for the day at 8:10 am.  I had previously sent them a very complete record of my medical history and had had the various doctors involved in my cancer treatment send all their reports and all the slides and images that they had.

At  8:30 I received a shot of something that made my bones show up for the bone scan.  At 10 blood was drawn as reported above.  At 10:15 we went to an optional nutrition for cancer class.  We were the only attendees to the dietitian scrubbed her presentation and we talked about my condition and what foods I should be taking. We had already moved to the kind of diet they recommend (basically the Mediterranean diet). We wondered whether any foods could affect white blood cell count, since one of the dangers during chemo is that that count goes low and while low the danger of infection-and the inability to fight infection is lessened. The answer was no, no food affects white blood cell count. I am low in hemoglobin and calcium so we reviewed foods that would increase those counts.

At 11:30 I had the bone scan. It lasted 25 minutes. Then the doctor in attendance wanted a more detailed scan of my pelvic area. After waiting 25 minutes for the appropriate machine to be available, I had that round of images, taking about 30 more minutes.

By this time it was past 1, so we went to eat in a cafeteria.  At 2:30 we began the meeting with the doctors, two of them, a resident who was in oncology this week and an expert who has been at Mayo for 30 years.  The resident, who I thought at first was the president of the local high school senior class, went over the blood work, explaining each of the numbers.  As I said all are in the normal range except calcium and hemoglobin which are just below normal. We asked a number of questions. She answered what she could and took the others to ask the expert. One of the key things she told us was that Texotere, the drug they are using for my chemo, is the gold standard of prostate chemo treatment..

A bit later the expert came, Dr. Quevedo. The first thing he asked me was whether Riordan was Spanish.  I said it could be because a number of Irishmen had fled to Spain after the various wars that the Catholics lost to the English.

His main concern was that the tumors have appeared on my peritoneal wall. This location is highly unusual for metastatic prostate cancer. As a result, after some explaining and reviewing of images, he scheduled a biopsy of the lump near my navel.  We will return to Mayo on November 12 and have the requisite blood draw (at 8) and the biopsy at 10 on November 13.  He wants to rule out that it could be some other cancer causing the tumors on the peritoneal wall. To arrange the biopsy he called around until he found a world renowned expert would do it and then he just scheduled me in.  It was pretty amazing considering the hassle one sometimes goes through to get an appointment with a specialist.

He also addressed the lesion, or tumor, on my iliac crest, one of the hip bones.  The resident had suggested that they could radiate it, but the expert said no. It’s position on the bone made that impossible. He praised my oncologist here in Menomonie for doing a good job with my condition.  Lastly they told me that successful chemo would lengthen my life span by several years, which was certainly good news.

I have hit the highlights here.  The review was thorough. We left at 5:30 feeling very good about the day and our treatment throughout the day. We planned to drive home that night, but once we were out of the office the tension of the day caught up with us.  It was all we could do to walk to a nearby restaurant, eat, and come back. I think I was asleep at 8:30.

For those that live in the Menomonie area, here is a note on driving to Rochester. We went down on a beautiful day following Hwys 25 and 35 to Wabasha. There we took Hwy 60 to Zumbro Falls and then 63 into Rochester.  Hwy 60 is a fabulous scenic curvy road.  It was fun to drive.  That route took us two hours. Coming home we came back through Plainview and Kellogg, up to Wabasha and on to Menomonie, a route that took a little over 90 minutes.  It is more rural and less scenic but we moved right along.

Second chemo session

-Second Chemo Session

Thursday, October 29, 2015

Today I had my second chemo. I have accompanied this entry with photos that include needles inserted into me. Just so you are prepared. Two drugs, Aloxi and Pepcid, are “pushed” into me.  The saline, dexamethasone and texotere flow from bags hung on a stand at my side. This stand has wheels so I can take it to the restroom should I need that. Also the IV department provides comfy recliners for me for the two hours I sit there.

We left home about 9:45 for a 10 am appointment at Mayo Clinic Health System-Red Cedar. After a few preliminaries of registering and checking my vitals, the actual session began at 10:15.  First the needle was inserted into a vein on my left hand. I had had a bit of redness last time with the needle at my right elbow. If a problem develops, it will be easier to care for on the hand.  You can see the arrangement in the photo below.

Then in succession came a few minutes of saline solution followed by 20 mg of dexamethasone, a steroid.  The dex started into me at 10:15 and flowed until 10:30.  After an 8-minute preparation, the next drug, an anti-nausea medication, Aloxi, .25 mg, flowed in, and then 20 mg of Pepcid, another stomach calmer.  The last two drugs took 7 minutes to enter me.  At 10:43 the 150 mg of Taxotere began to flow.  At 11:58 the bag was empty. After a Lupron shot, something I receive every 4 months, we left for home about 12:10.

Every drug is scanned before it is set up to flow into me. Also, before the Texotere is hooked up to me, two people have to read the labels and confirm that it is Texotere and it is meant for me. I have a picture of the scanner below also. 

The session takes place in a normal sized consultation room. Everyone is attentive, very professional, yet willing to carry on conversations about whatever topic arises. Today we discussed Dexter cattle, an Irish breed, for a bit.  I read most of the time. My current book is Our Daily Bread, a socioeconomic history of Germany from 1500-1850. I have amassed a large amount of data on my ggg grandfather Jacob Reiser and I have decided to turn all that material into some kind of small book. Our Daily Bread is part of my research.

I type this at 1:30 pm after lunch.  I feel fine and will go for a walk of about 2 miles shortly.  I don’t know how I will feel tomorrow so I want to get the walk in today.  Last time I really felt ok except for tiredness and constipation issues.  I am not sure that those issues were caused by the chemo; they had been present for several weeks prior as I worked through the ascites problems in my abdominal cavity.

I have been thinking about an entry on my emotional state as my cancer has taken the turn that it has, but I will wait a bit before I write that. The short version is that I am blessed with a makeup that allows me to say truly that I am not worried and not afraid. But there is more to that and I would like to explain it.

The lead up to chemotherapy

My cancer after eight years became aggressive on September 18. I had a vomiting attack which I initially attributed to a virus; however I had another one on September 22. That same day I went to see my oncologist.  The PSA drawn that day indicated that Zytiga had failed. He started me on Xtandi. In addition I complained about my back hurting; he decided I should have a CT scan. That scan showed that I had an abnormal amount of  ascites fluid in my abdominal cavity. We decided to have the cavity drained which happened a few days later on October 1. They removed 5.5 liters of fluid from my cavity.  That process is pretty interesting. I was awake through all of it and talked to the doctor and the nurse. At one point near the end they actually tipped me over so all the fluid would run down toward the  tap needle. In addition the sudden increase of ascites caused the doctor to suggest I stop  Xtandi and begin chemotherapy as soon as possible which I did on October 8. I will have the therapy, which takes about 90 minutes, every three weeks.  They are not sure how many sessions I will need.

 The only side effect I am having is a constipation diarrhea problem. I believe I will have this straightened around in the next day or two. What I will say is that MiraLAX really works on constipation.

The other thing that happened is that my  doctor thinks that I have about a year to live. I have announced this to my family and friends and of course they have found that hard. I have known for some time that this day would come and I am actually more prepared for it than I thought. I do not expect, however, to sit around and wait to die. I have many curiosities and enjoyments and I intend to do them until I am physically or mentally no longer able. I will comment more on the emotional side of this in future posts.

One last thing -- I will go to Rochester clinic for a thorough examination of my case in early November. They have asked for a complete set of records including slides and images back to 2007. I think a lot of us are waiting to see the results of all the tests there. One thing I have not liked is that I have had to cancel some of the speeches that I had been asked to give. But so it goes.

Beginning Chemo

 On October 8, 2015 I begin chemotherapy for my prostate cancer. The drug being uses Taxotere apparently the usual drug to use in this situation. Since the first treatment I have not had so far any of the usual side effects such as hair loss or metallic taste but I am having ongoing problems with my lower G.I. system. I will detail of these in later blog.

A daunting rise in PSA

September 11, 2015

I found my most recent PSA checkup on Sept 8 daunting.  After I began using Zytega in early July, the PSA dropped from 350 to 89 in just 3 weeks.  Wow, was that encouraging.  On September 8 the PSA was up to 260.  It will be measured again on September 22. If it goes up, I will start a new medication and if it goes down, I will stay on Zytega.

Of course after that spectacular drop, the recent results were disappointing. I try not to let myself hope for good things, but I admit I hoped that after the spectacular beginning, the number would be even lower. 

The daunting part comes from my realization that I really am in an end of life situation.  I have always been able to avoid that awareness. Oh, I had it, and acknowledged it verbally, but never really in my gut. That happened the other day. It is not particularly scary, as I have known for years that it would happen. I just wasn’t prepared; it caught me off guard.

I just had a friend die of cancer and earlier this summer another one.  For both of them they were basically OK and lively even though what they had was, they knew, terminal. And then one day it set in and within a short time, 2-4 weeks, they had died.  I finally realized that this could happen to me at any time, beginning tomorrow.  Like I say, that caught me off guard.

I am basically not sure how to handle this. One part of me says, Carpe diem!—we have done that all summer: trip down the Mississippi, trip to Denmark, month with son and family in Seattle.  And another says, Start getting rid of stuff so life is easier for Mary after I am gone and she doesn’t have to clean out all the stuff I have collected over the years.  I think I will work on that in the upcoming weeks.

I am not sure what to say. Getting my head around this is taking a bit.  I am resolved to not crumble to cancer and its inevitable end.  I am resolved to be even-keeled and funny to the end. But still, when the realization that it could begin any day occurs, there is a hard couple of hours. 

Aricles dealing with prostate cancer

During the past few weeks,  friends have sent me two urls that lead to articles regarding prostate cancer treatment. I post them here for whomever.

1. Repurposing itraconazole as a treatment for advanced prostate cancer: a noncomparative randomized phase II trial in men with metastatic castration-... - PubMed - NCBI

http://www.ncbi.nlm.nih.gov/pubmed/23340005

2. Link between high blood levels of omega-3 fatty acids and prostate cancer - Fred Hutchinson Cancer Research Center

http://www.fredhutch.org/en/news/releases/2013/07/omega-three-fatty-acids-risk-prostate-cancer.html

Some thoughts on precision and decision

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[Note; the following piece begins with old information. My PSA did go from 14 to 50 and then it went up again to 350. At that point my oncologist switched my treatment to prednisone and Zytiga.  Three weeks after I began that treatment, my PSA declined to 89. I will not have a followup reading until the middle of September. The rest of the piece is my ruminations about this disease. To see another view of this, see my previous entry which is a letter to my nephew about the same issues.]

My PSA recently increased from 14 to 50. This increase occurred after the PSA had decreased from 22 to 14. The decrease occurred during the first two months that I was taking a twice-daily dose of dexamethasone. The increase occurred during the second two months.  I am now waiting until the end of May to discover whether continued use of dexamethasone will again reduce my PSA or whether it “fails” and I need to begin a third medication.  As I understand it if the third one also fails there is a fourth and then chemo.

After I announced this development my nephew wrote to me asking for an explanation in layman’s terms of PSA. I couldn’t supply it and after reading various websites, still can’t.

The two issues have caused me to look closely at the biology involved and my emotional state. At this point I feel imprecision and indecision.

One dimension of the imprecision is the process of PSA at work in the body.

PSA means prostate specific antigen. The prostate produces PSA (http://www.cancer.gov/cancertopics/types/prostate/psa-fact-sheet ). These two definitions are relevant. (1) An antigen “is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment, such as chemicals, bacteria, viruses, or pollen. An antigen may also be formed inside the body, as with bacterial toxins or tissue cells” (http://www.nlm.nih.gov/medlineplus/ency/article/002224.htm). (2) An antibody is “a protein produced by the body's immune system when it detects harmful substances, called antigens. Examples of antigens include microorganisms (bacteria, fungi, parasites, and viruses) and chemicals” (http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm ).

This seems clear. Antigens are bad. Antibodies are good. But then my questions begin. Why does the prostate produce antigens? Does a part of my body produce PSA-fighting antibodies? What does a rising PSA really mean? Because I have had my prostate removed what in my body is creating PSA now? Is the rise and continued production related to tumors that have formed?

When I read various sites, I find the definitions, but not the description of the process. The sites quickly move to discussions of the PSA blood test and the effectiveness of screening. Those discussions are very clear, but they seem limited to the test and not the far-ranging biological process or the emotional reaction to the increase.

Another dimension revolves around the meaning of my original Gleason score of 9 and the fact that even in the prostatectomy the surgeon removed part of my vas deferens. At this point I have a biopsy-identified tumor in my iliac crest--a bone in my hip structure, and two other probable tumors in my abdominal cavity.

What do those facts mean for me in terms of quality of life and life expectancy?  When I read websites about them I find very technical descriptions, some anecdotal stories of maintaining ones calm, and calming stories of the “there will always be help and comfort at the end.”  None of them are useful to me.

I have found it hard to know quite how to react to my rising PSA. When it first started to go up, my urologist told me that I was “not at risk” (of dying soon) but that I could have quality of life issues. Exactly what those are, or could be, is not clear to me. After the PSA climbed above 2 the urologist said he had done all he could and that I would now need to see an oncologist, which I am currently doing. The oncologist is very focused on the PSA number and some other questions that I will discuss in a minute.  The goal is to control the number, to prevent its rise. If it rises, the oncologist switches the medication. So far I have been on two medications and expect to begin a third at the end of May.

The questions he asks have to do with discomfort. How am I feeling? Do I have pain?  I answer “no.” I feel pretty good. I work out with weights three times a week and rock climb once a week.  I have noticed no diminution of my ability to perform at either activity.  I have increased my skill level at rock climbing.  Once I answer in this manner, the discussion of discomfort ends and we are back to the numbers.  At the last appointment the oncologist told me that rising PSA might not mean as much bad as it could if it is accompanied by a stable body health.  I have both.

The indecision is the result of the issues with the health description. The basic feeling that I have to fight is What is the use? Why bother?  I find that this reaction occurs both to the prescribed course of treatment and to almost any decision relating to my future, such a planning a trip.  If it takes about 4 months to determine whether a medication is working, and if I have two more medications to go, then in eight months or around the end of January 2016 I will begin chemo. What should I plan for 2016? You see the issue? It is a tough one to negotiate.l

 I have done some reading. Prostate tumors come from prostate cancer cells that have travelled to a new location. Well, OK.  But what does an increase in PSA mean?  That there are more tumors?  That more cells are making PSA? I don’t know.

Today, though, I can talk about how the two issues—indecision and imprecision—come together.  I have blood in my urine today after none for about three weeks. It is a bit thicker than usual and it has passed on four consecutive urinations. Usually the bleeding stops after two. The first bleeding often passes a clot with blood and then the next bleeding seems to clean out the residual blood. I have seen the clot in three of the urinations. The first one happened while I was defecating; if there was one, I didn’t see it.

OK, now for the interaction. What does this bleeding indicate? Why has it started up after a three-week layoff?  Well, this week I changed my diet.  I have gone to a heavily plant based diet. We have only had meat one day this week, chicken last night. We had trout one night and two nights were vegetarian. I am eating a half avocado a day. There is some indication that avocado contains a chemical that might fight the cancer.  I also drank my first cup of green tea yesterday, a practice I expect to continue regularly.  Did the diet change cause this bleeding?  I suspect not , but I am not sure.  So, should I continue on this dietary regimen? Or is it silly, that is, having no effect, or dangerous, that is, causing the cancer to react to what is passing through the urinary and colonic tracks?

Today, too, I have a dull ache in my lower right groin.  I have had it before. I comes and goes. My primary doctor thought it was related to the rock climbing I do. I often stretch out into extreme angles at my hips. He thought it was some kind of sports hernia.  On the other hand the CT scan I had last year indicated that there is a mass in my rectal area and my urologist confirmed that it is there—he could feel it. But he wasn’t sure it was a tumor.

So what should I do? How do I react to this mild pain?  The best is to just ignore it. Figure old bodies get pain. It goes away. But when I let in and im kick in, then I can wonder if the pain is a symptom.  I don’t like the kind of worry. I don’t have the answer to the questions. I don’t like leaving what could be potentially dangerous (at least so I think, but I have no idea) alone.  Should I do something about that? Talk to someone? I tell Mary, and the doctor when I see him, but that is all.  I hope what I do is right.

I can give another example related to the bleeding. Often a bleeding episode occurs when I have a pressure on my anus. It feels like I need to sit down to take a bm. (I have decided to quit using words like crap or shit. Less aggressive seems better.) Sometimes I do sit and stools, urine and blood emerge.  Sometimes I just stand at the toilet, the urine and blood emerge and the feeling of needing to defecate goes away.  Sometimes I sit and a stool drops and urine but no blood. Today I have had all three experiences. Granted the context I am putting all this in—in and im—how do/should I react to all this? Ignore it? Worry that the tumor is getting bigger? I find this area tedious and it is one of the things I mean when I say that a person has to fight cancer often in not very obvious ways.

The other thing that has happened is that the PSA jumped. Mary and I had several end-of-life discussions. Then things settle down and I jump back from that boundary and deal again with the ordinary vicissitudes of this disease and daily life.  When really do I need to do end-of-life thinking?  Perhaps always or regularly but as often as I visit the oncologist, every couple of months? Or about the same as anyone else who is past 70 and does not know whether the proverbial bus will run you over today.

An answer to a nephew

During the spring of 2015 my PSA rose quickly. By May it was 350. In June I began to take Zytiga and prednisone. In the first three weeks of being on that regimen, the PSA dropped to 89.  Naturally, I hope that decrease continues.  During the spring I wrote to the family and Keenan, one of my nephews, asked me if I could explain things better. What is attached below is my letter to him. I hope you find it helpful.

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April 30, 2015

Dear Keenan,

As a result of your question to me, I went to see a second-opinion oncologist today. It was a pretty neat experience. When I tried to answer your question of a couple of weeks back, I realized I didn’t know a whole lot about the biology of prostate cancer.  That lack had been deliberate on my part because when I first got cancer I went on line and read a lot of stuff that basically just scared me. So I decided to just trust my urologist which I did for all these years.  But as the PSA went up and the tumor appeared in my hip bone, I got more interested in what this stuff meant. Your inquiry put me over the top.

I did some reading and discovered that I am in a place where it is not exactly clear what is happening to me and what the sequence of treatment might be. Thus, off to the second-opinion guy.

I had two questions: What is the biology of prostate cancer? And Is my current treatment correct, or at least acceptable?  The answer to the second question is that yes it is acceptable.  Here is the deal. When I go to the oncologist, the first question always is Do you have any pain?  I say ‘no’ and then we talk about other things. So today I asked, What if I say ‘yes’? If I say yes, then I am what is called ‘symptomatic’, that is, my tumor is causing problems and they need to do something about it. There are a range of methods to deal with that eventuality. I won’t go into them here. Basically they are various levels of radiation or chemotherapy.  Because I say no, I am ‘asymptomatic’ which means that whatever evil the tumor will do has not started yet, which is good. I workout, feel positive, rock climb, run a photo club. I do what I want to do and am not restricted by my physical condition. That is good. As a result the prescribed treatment is more pills of the ‘miracle’ variety. That means that they can slow down the cancer (though at this point there is no cure for what I have).

Well, that discussion led into How does all this work in my body?  First, why did my (or does your) prostate produce PSA? The answer is they don’t know. PSA is an antigen. Basically antigens are bad to have in your body. You can look up a definition to know more. When antigens invade your body, some mechanism in your body produces antibodies, which are good. Apparently the two things maintain some kind of equilibrium in a healthy male body (a ‘good’ PSA for men is 4 or below). Cancer happens when the PSA jumps ahead of the antibodies (I think).

What produces PSA? First, your prostate. But if you have cancer and they take the prostate out, then some residual of prostate cancer cells produce it.  Here is the deal, according to my oncologist this morning—PSA only tells how fast something, probably a tumor, is producing PSA.  It does not tell how bad or extensive the cancer is. So, the oncologist pointed out, I could be in a room with my PSA of 50 and someone else could be there with a PSA of 10 but he could have more extensive cancer than I do. As a result of that fact, not just PSA but whether you are or are not symptomatic, indicates what a doctor should do. I am not symptomatic at this point, so there is less urgency than if I were.

All that of course leads to Well, how long have I got? Do I need a bucket list?  His answer was I don’t know how long you have. You could have 6 months and you could have 20 years.  The thing is that prostate cancer is very individualized. It is, apparently, not predictable other than in a very general way. That means that one day somewhere in the future I will wake up with the pain that tells me and the oncologist that tougher treatments have to be used. Then I might get a bucket list date.

What I take from this discussion is that I live with a “certain uncertainty.” By that I mean that everyone lives with uncertainty about death. Anyone of us could, as the old saying goes, get hit by a bus tomorrow (harder in Menomonie than in a big city, but even we have bus routes). That is uncertainty. Certain uncertainty is that probably the cancer will eventually kick in with the pain and then I will have a different issue to deal with.

I am left with Plan and Do. So I would like to go back to Germany (I have studied German since July and can read and speak baby sentences), go to Africa where Mary has always wanted to go, delight in the trip down the River which your dad has wanted to do for years, and your Uncle Mike can’t wait to get going on, plan my 50th college reunion (I was the president of my class, and the valedictorian), plan our 50th wedding anniversary.  You get the idea.

And so, to you, Thank you. Your question got me off my ass, got me reading, got me to formulate questions (at midnight, one dark night, writing feverishly into a little note book I keep by my bedside), and got me to act so that I had the appointment I had today.  As I have said, I count on you.  And you came through.

If you have more questions, ask them. You have a great track record.  In the meantime here is the hug I tell everyone to give those that you love. I love you, and I hope I see you and yours before all too long.

Dan

The daily fight against cancer--little things, not big ones

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May 11, 2015

I have been working on a longer document dealing with indecision and imprecision. By indecision I mean the inability to make decisions as a result of worry about the consequences of rising PSA. By imprecision I mean my incomplete, even embarrassing lack of information on the physical working of prostate cancer.

I will post those entries later when I have finished them and am not publishing basically a rough draft.

For now I want to comment on the daily task of fighting cancer. For me the issues are not pain, or “why me?” syndrome, or fear of death. The issue is a kind of indifference. It is hard to define this experience. One way to talk about it is to use the phrase ‘Who cares?’  To put it a different way, it is the sense that the day ahead is mostly empty. I don’t feel a sense of commitment to this day or the tasks I might have to do. The opposite feeling can be illustrated with an image: I walk forward eagerly chest out, ready for what the day brings.

The negative feeling is, I suppose, some kind of depressive reaction. It seems to come from nowhere. Nothing particularly sets it off. Just there it is. The other feeling is almost as random.  I have had both all my life, but I felt the latter one more often. Job, family, duties, hobbies, interests, all called me and I responded, chest out, into the complexities required of me. The required tasks, when completed, left me with a sense of well-being. I had it many times after a good class. I have had it rock climbing when I have a good day on the wall, even if I don’t complete a new, more highly rated route.

The days I am talking about find me flat, feeling empty.  That feeling is what has to be dealt with. I don’t have a sure fire method to handle the feeling.  The best I have been able to do is identify it.  That strategy gives me strength. If I can identify it, I can keep it from controlling me. It is not me, it is this thing that happens.  That strategy is part of my advice about dealing with cancer—Look it in the face. See it for what it is.

In some of my posts and emails, I have gone on about keeping up my activities and my goals, and I do keep up. But those writings often have a sense of whistling in the graveyard. I will endure.  Those are fun to write and the general attitude is one that is easy to agree to. There I am on my white horse, combatting the enemy dragon in single handed combat. Those writings tend to occur after a test where my PSA has once again gone up. I want my support team to know that though this cancer has a grim ending, one can’t be cowed.

The feeling I am addressing here, though, is not in that vein. It is the quiet murmuring that burbles up without warning.  It is there.  And it is insidious. So for me, and for you if you are suffering from this cancer, I have to say—this happens. It is hard to deal with. What I know is that it will pass. Keep going forward.

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.