Surviving Prostate Cancer: Our Stories of Life, Survival, and what it means

2009-08-09T01:02:00.011-05:00

Well, today is Sunday, August 9, 2009.

I am happy, healthy, and retired from editing.

I am still here.

Thanks to Dr. Charles Myers of the American Institute for the Diseases of the Prostate, Earlysville, Virginia. (http://www.prostateforum.com/) and to Dr. David Butler, radiation oncologist, of St. Luke's Hospital, Chesterfield, Missouri.

I want to thank my wife Ann, who gave me a card that said, "Life is slippery, here, take my hand." Thanks to Kelly and Andrea, for always being there for me. And thanks to Ian, Joann, Eli, and Ben, for giving me a future to hope for.
These two doctors saved my life; my family gives it meaning.

2005-09-08T12:48:00.000-05:00

June 30, 2005

Me, at an earlier time and place.

2005-09-02T20:41:00.000-05:00

July 1, 2005

Dedicated to my Mom,
who gave me the gifts of pride, gentleness,
unconditional love, and undying curiosity;

and who lived her life with kindness and dignity.
---
She also gave me the gift of high expectations.
I hope I have begun to live up to them.

And to my wife, Ann, always Ann,
who gave me the gift of us.
Sine qua non (Without which, nothing).

Ann, back when the biggest issue was
whether to ride the Yamaha or the Harley.

And to our families,
whose love, support, and understanding
have been constant as
everything else changed.

********

2005-09-01T17:24:00.000-05:00

July 7, 2005

Prelude

When I began this journey, I was lost and scared. It was as if I were weaponless in an almost mythological but certainly unfriendly land, full of unknown obstacles and nightmarish scenes, with no real idea of where I was or of what was going to happen. I knew where I wanted to be, but I had no map and thus nothing to help me find my way.

I believe, now, that I do.

This is the story of my three-year journey. I think that my wife and I are stronger, wiser, and closer for the experience.

Each of us has his or her own unique journey. My hope is that something here will help someone else on theirs.

When I was first diagnosed, and began to develop an inkling of its significance, I wrote on a little yellow Post-It, "Nothing has changed" and kept it in a drawer. I would refer to it from time to time as things changed, sometimes in small ways, sometimes in really big ways. I have come to believe that God has a sense of humor, because if he or she had been reading over my shoulder, my note to myself certainly would have caused a chuckle.

Change is change, neither good nor bad, but rather what you make of it.

I should have written that "Nothing important has changed."

-john

2005-08-31T21:10:00.000-05:00

July 13, 2005

*****

To navigate these pages, either click on the links at the top left, or click on the reference to the next part at the bottom of the page if one appears. Links that further define a term used in the text are underscored. Click the "back" button on the linked page to return to this essay. If you would like to leave a comment regarding a specific part, please click on the "Comment" link at the bottom of each post.

2005-08-30T19:30:00.000-05:00

July 19, 20005

Celtic hearts (photo courtesy of my wife, with whom I share this tattoo.)

Cancer recovery is hard and has moments that you would rather not remember.

These hearts remind us of the love that kept us together

and of the moments we must never forget.

2005-08-30T16:36:00.000-05:00

Serenity (somewhere in Mexico)

2005-08-29T13:53:00.000-05:00

July 25, 2005

Something to Think About

I was home one day watching one of several videotapes of Steven Spielberg's Taken, when the little girl who narrates the film said something like this:

When you find yourself in the middle of your life,
and you're nowhere near where you were going,
how do you find a way from the person you've become
to the one you know you would have been?

I think that we can only help each other.
And never give up!

2005-08-28T12:33:00.000-05:00

July 31, 2005

My Story

I don’t know how long this is going to run, so I’m going to break it up into parts.

Please bear with me; I believe this information is important—it is to me—and may, I sincerely hope, be important to others. I’m kind of a private person; I certainly don’t like to talk about myself very much, but I think that what I want to say overrides my inclination toward privacy.

I have had two kinds of cancer. The following posts will describe how I have dealt with them. It will take years to determine whether we have effected a cure for either.

Physicians: If I say something that is just patently wrong, please give me your comments and make your case. I’ll be happy to correct the appropriate post if necessary.

Constructive comments are indeed welcomed and encouraged. We, as survivors and families of survivors, need to support one another, learn from one another, and help one another. We are not alone.

A favorite tee-shirt that I bought at my physician's office, Dr. Charles Myers:

www.prostateforum.com/default.htm

says, quite simply, "Surviving Is Living to Tell About It".

So here I am, telling about it.

First, I must ask, please, no sympathy. Sympathy, in my view, is appropriate for funerals and divorces. I am very happily married and a long way from being dead.

Part 1—a little history

When I was 10, my Mom developed throat cancer. She had the tumor removed, and its only apparent effect was that she could no longer sing in the church choir. During the next 6 years, she also developed uterine cancer and breast cancer; both cancers were surgically removed, although she almost died during one of these operations. Well, actually she was clinically dead for a short time, but she fought her way back.

When I was 16, she died. When I look back, the signs were there, but I wasn’t aware of how serious things were. I am thankful that I made her proud of me in my junior year, and I am thankful that I had the opportunity to kiss her good-bye the day before. I didn’t see her the day she died; they called me out of speech class to tell me. One of those moments forever etched in my mind.

Around 35 years later, my father died of a combination of prostate cancer and colon cancer, with additional suffering from unchecked osteoporosis. It was a hard and painful death. He also had a stress-related cardiac condition, but cancer took his life.

So a common thread in my family begins to appear. How I dealt with it is described in Part 2.

Stick with me. Your life might depend on it. Men generally don’t talk about health issues; we should.

2005-08-27T12:29:00.000-05:00

August 6

Part 2

John pretends to be an ostrich

Head in the sand. Deep in denial. All I had ever had was pneumonia, bronchitis, chickenpox, and mumps. All of my male relatives lived well into their 80s, so I thought, “no sweat.”

I didn't like doctors. Or nurses. Or hospitals. I have worked with doctors and nurses on a peer-to-peer basis for 15 years as a medical editor helping them publish and, when the white coats come off, we get along fine. That is to say, I don’t like the institution of medicine. I don’t like institutions, generally. I am not one who is easily told what to do. And I thought I was bulletproof. My cholesterol is low, and pulse and blood pressure are normal.

Well . . .

Waking up is hard to do (apologies to Neil Sedaka)

My wife, Ann, and I routinely shop for groceries on the weekend. Occasionally, some outfit or another who has more concern for my health than I did would offer blood tests at the store for various diseases. Ann convinced me, after much reasoning, to have my PSA checked.

My score for PSA (prostate-specific antigen) should not exceed either 2 or 4, depending on which doctor you talk to. Now I personally like 2 as a limit. My first test came back 6-point-something. So I immediately went to the internet, and found “research” that concluded the PSA test was an “unreliable screening tool.” I had no symptoms of any disease.

Roughly 12 to 18 months later, Ann convinced me to have the test again. This time it was 9-point-something. I preferred to have my head firmly in the sand. It was more comfortable that way. Besides, even if I had prostate cancer the likelihood of actually dying from it, statistically, was slim, according to the same sources.

Lies, damn lies, and statistics

Hmmm, wrong. Prostate cancer is a sneaky son-of-a-@%^*# that can kill you while you pretend to be a big bird. Very fortunately, for me, this wasn’t all that my body had in store.

How to get a hernia while you’re looking the other way

Natural Bridges State Park in California is a beautiful coastal park. We went there on a visit to my oldest son and daughter-in-law and their son. The tide pools are among rocks that get slippery as the tide goes in and out. My oldest grandchild, who was three years old, was walking by himself, and understandably had some trouble navigating the rocks, so I picked him up. And I felt a twinge. Aw, hell, I’ve had hernias before, and guess what? Another inguinal hernia. Been there, done that. Can do it again if I have to. It was August 31, 2002.

One of these sides is not like the other

At the motel that night, I confirmed it; push in, it comes back out. Crap. Got to schedule an appointment with a surgeon. Double-crap. Perversely, I thought, “well, at least it’s a surgeon." Surgery is pretty cut-and-dried—if you don’t mind the pun.

Hang in there. In Part 3 it starts to get interesting.

2005-08-27T12:21:00.000-05:00

August 6

Part 3

The trip

I didn’t know it, but I was about to embark on a 3-year journey that would change almost everything that I thought was important in my life.

Persistent docs

So I went to the hernia surgeon; he did a digital rectal examination (DRE) and found a somewhat enlarged prostate. No surprise; I was, after all, almost 58 years old. The examination was, I thought, undignified, but I consider them routine now. When he asked me when my last PSA test had been, I fudged and told him I couldn’t remember, hoping he would let it go at that. After all, I had surgery to worry about. Why add to it? He didn’t let it go. He took a blood sample and told me he was going to send it out to the lab.

You are so screwed, John. No more games.

Houston, we have a problem

PSA came back 13-something. The ostrich died on the spot, and the sand washed away. No more fooling around. I realized that the research I had been reading was theoretical and dealt with broad economic issues of testing. In other words, from a personal point of view, it became useless to me overnight. Very suddenly, I knew metaphorically that I had taken a bullet. Now what?

Well, first things first. On October 15, 2002, I got the hernia fixed, recovered from that (wow, I didn’t remember how hard surgery can be!), and made an appointment to see the first urologist whose name I was given, because—very early in this life-and-death game I have been forced to play—I don’t know any better. I was in a state of near panic.

Apologies to Douglas Adams, but it’s true . . .

Rule number 1: Don’t panic!

An introduction to reality

Urologist is a good-looking guy who resembles one of my favorite movie stars. I like his movies and find that reassuring--he saved the world once, so, well . . .. (Logic is not one of my strong points at this time.) He starts talking in terms of “Gleason scores” and “statistical survival rates,” and a certain small amount of discomfort begins to take root in a corner of my mind. Occasionally, he remarks that it’s “all just statistics,” and I realize he’s talking about my survival. However, I understood that if I decide to have a radical prostatectomy (complete removal of the prostate), which is the recommended treatment on the internet depending on which page I have open, the odds may be on my side.

A little diagnostic pain and how to avoid it (important!)

The urologist has to have a biopsy of my prostate to see what kind of cancer I may have (there are grades of concern at the cellular level, which is expressed as the Gleason score—the higher the score, the more concern) and whether it has spread.

A biopsy procedure for the prostate is performed by the surgeon entering your body from the rear, locating the prostate with the aid of ultrasound, and snipping small pieces of it off, to be studied later in the laboratory.

My urologist assured me that I would experience some pressure and minor pain (like a “bee sting”). That was somewhat "misleading." A prostate biopsy is very unpleasant and the more slices they can take, the more accurate my diagnosis may be, so there is no motivation to abbreviate this procedure. The sensation is rather frightening. No, it's just plain scary!

I did not learn until later that many surgeons will offer their patients a local anesthetic. Find a surgeon who does that. This message is important, and those of you who go down this road will thank me for it.

Did I say don’t panic? The treatment decision may be one of the most important decisions of your life--one that you are certainly going to have to live with for a long time. Take a little time. Consider all of your options.

Rule number 2: Never assume.

Stay with me; there’s much more to come in Part 4.

2005-08-26T12:17:00.000-05:00

August 12

Part 4

The journey begins

Okay, now to summarize. I got the hernia fixed, and I can walk around. Got a scar from the belly button down to as far as it can go (relevant later). PSA is bouncing from 11 to 13 but is relatively stable (not great but not horrendous, either). Gleason score is either 8 or 9 (out of a possible 10) depending on which pathologist is reading it. Not good. PSA could have been much worse (some guys run over 100 or more). Low PSA and low Gleason are the best possible combination. I don’t quite have either. I chose a radical prostatectomy (RP) as my first option. All I was thinking is, “get this thing out of me.”

Perhaps it wasn’t the best choice, but I will never know. I took my best shot at the time.

An aside

I need to explain that I work for a multinational health textbook publishing company. We have an outstanding insurance plan. In addition, I am accustomed to dealing with the health professions on an informal, questioning basis. It’s what I get paid for, so I carry that attitude over into my relationships with my new doctors. This will pay off big, later.

Once more, into the brink . . .

Surgery is December 18, 2002. Not too difficult. Recovering from hernia surgery was actually harder. Need to learn to pee all over again (the prostate surrounds and is attached to the urinary tract, so some tubes inside have to be reconnected, and they are kind of traumatized). Very sore stomach area, even though the urologic surgeon used essentially the same incision area as did the hernia repair surgeon.

Post-surgery, the report is that apparently the cancer had not spread and that they got all of it. I am thankful to the point of tears and assume a complete cure and a long life ahead of me. Follow-up CT/PET scans show no metastases to the lymph nodes or liver.

Bone scan is negative.

My surgeon is my hero.

#%&*!

Less than a year later, PSA rises from 0.4 (I should have known I had a potential problem then—PSA should have stayed around <0.01, or undetectable) to 2.4. Cancer is back.

FYI: I have come to think that the cancer’s return is due to micrometastases in the area adjacent to the prostate. Perhaps if I had had radiation therapy right after surgery, the prostate cancer may not have returned. However, it isn’t useful to dwell on this possibility; it doesn’t reflect reality. This is the thing about prostate cancer: right now, there seem be almost infinite possibilities. It is not, in medical jargon, a “well-understood” disease.

I talk to my surgeon; he talks about statistics. I talk about research, and he mumbles something about “throw-away journals.” I ask him for an educated prognosis, and he gives me 10 years, max. Uh-oh.

Like hell. I need another doctor. I’ve worked with these guys for a long time helping them publish their research. I know they are not gods. And this guy isn’t even taking the time to stay abreast of the latest research. There is a final straw in our relationship; more on that later.

Click here for Part 5.

2005-08-25T15:26:00.000-05:00

Part 5

More searching

I called a well-known urological surgeon, and I also corresponded with him by email. I asked him to recommend someone really, really good.

This time I want a medical oncologist, or someone who specializes in treating cancer. I am referred to a physician at The Big Hospital who has an Ivy League med-school degree. Makes sense to me. I mean, you would want to go to The Big Hospital too, wouldn’t you? I have a solution! This is January 13, 2004. My PSA is 2.5, and the tumor mass in my lymph node is approximately 3 cm. Could be much worse.

Three appointments later I find that “this dog don’t bark” either. He is incredibly intelligent, and he knows a lot of research, but he talks down to me from Mt. Olympus and has learned to “always say ‘no.’” He has developed a standard protocol that protects him from lawsuits, and will go no further. Appointments are limited to 15 minutes, and as that time approaches you can tell he is impatient. I get no help, and he answers none of my questions. He thinks I’m a smart aleck, and I think he’s a pompous ass. This is in the spring of 2004. Leaving him behind, I start looking elsewhere. After the last appointment, I'm almost in tears from frustration.

This is where it gets really good.

Finally! An end to the search:

http://www.prostateforum.com/default.htm

If you need to know the facts about prostate cancer, and read in layman’s terms about all of the latest research, make this a prominent bookmark on your homepage and read everything on this website. Also, subscribe to the newsletter; I do.

This is my doctor--Dr. Charles Myers. He also has prostate cancer, and he is in remission. His PSA is less than 0.01. This is what I want.

In Part 6 I learn a very important rule.

2005-08-25T13:26:00.000-05:00

Part 6

Rule number 3

In part 5, I discovered and met Dr. Myers, the prostate cancer specialist in Virginia.

I had read in his newsletter about how he had decided upon his own treatment from other specialists. (1) I was surprised to read that he, himself, had run into the same shortcomings from other physicians that I have described earlier and how dissatisfied he was, and (2) I was very interested to learn about how he approached his decision-making, with the help of his wife. Basically, it comes to this:

Rule number 3: You decide whether the treatment option or options are demonstrably effective, and if the side effects are not worse than the effects of the disease you are treating, then you must decide to go with the treatment.

I read that and thought that I had learned it.

Serendipity

Dr. Myers’ prostate cancer was very similar to mine, so I decided “what better example could I possibly follow?” It involved radiation therapy and also hormone therapy—reducing PSA to the neighborhood of <0.01, and then proceeding with a radiation treatment called intensity modulated radiation therapy, or IMRT.

It will be obvious why I chose it. I also met a really good radiation oncologist at St. Luke’s hospital in Chesterfield, Missouri, Dr. David Butler. He does his research, he shares it with me, and he answers all of my questions honestly. He doesn’t even mind a little debate. I consider him a friend. I met him because he was featured on the local news.

The other option was something called “3-D conformal radiation therapy,” a somewhat older method that Dr. Myers had undergone. I read about his side effects and his statement that were he to choose again—now that IMRT is an option—he would choose IMRT. So of course I did. I had 35 treatments, starting July 28, 2004 and ending September 16.

Just stay with me. Lots more equally important stuff to come in Part 7.

2005-08-23T12:02:00.000-05:00

Part 7

A valuable insight

Hormone therapy (or Lupron shots) every 3 to 4 months are prescribed for me, depending on dosage, and cost anywhere from $2500 to $3000 a pop. Lupron shots "fool your body" into believing that is doesn't need to produce testosterone, the male hormone that causes prostate cancer to grow. Health insurance is a good thing. I pay almost nothing. Side effects from Lupron shots include “hot flashes” –just like your wife’s (although I think mine were worse), loss of muscle tone, and a thing called “emotional lability,” which means I will cry for any reason at all. Hot flashes are really unpleasant. The crying is, at worst, embarrassing. However, I eventually learned to control it.

I really learn to empathize with my wife. For the first time in my life, I understand what women deal with. Oddly enough, I also learn to listen instead of talk. This is appreciated by both of us and adds an entirely new dimension to our relationship. In adversity, I have gained much of value.

There is a standard protocol among most physicians for administering the first Lupron shot, because the first shot tends to produce what is called a “testosterone flare,” or a temporary increase in testosterone production. Obviously, I do not want this. A little white pill, called Casodex, is normally administered daily for a week before the shot; this prevents the flare. A good thing. However, I needed my first Lupron shot before I found Dr. Myers, so I returned to Dr. number 1; remember the movie star? A mistake on my part. He does not follow the protocol, so I will not take the shot in his office. I have my medical records transferred to me and tell his nurse that I won’t be back.

FYI: I find my medical records interesting reading; they contain information that I was not given, plus the occasional personal note from a nurse who does not like me. Well, I didn’t like her either. And anyhow, how is our relationship relevant to my medical treatment?

Shortly thereafter, his partner calls me at home. Wow, this is a first. He expresses concern that I am trying to treat myself. I reassure him that this is not the case and ask why I was not offered Casodex before Lupron. He says Casodex is very expensive. I think, “Excuse me? Who are you to decide what I should spend to take care of my health?” I don’t say it. I remain polite. On February 18, 2004, I go back to The Big Hospital and the Big Ego for the last time for my first Lupron shot. At least he knows what the proper protocol is, and I get the Casodex first.

See what can happen if you don’t do your own research? There is a lesson here, and its

Rule number 4: Do your own research

*&%#!, again!

Okay, so I have had surgery, hormone therapy, and radiation. Now what? I am really tired.

Still more to come. I don’t know it yet, but I am approaching a corner in Part 8 with some bad news on the other side.

2005-08-22T12:00:00.000-05:00

Part 8

I am so glad I met Dr. Myers

Before I get to that corner, let me describe just 1 minute of my first appointment with Dr. Myers. Dr. number 1, the movie star look-alike, had prescribed a drug called “Megace” to control my hot flashes. The first day I took it the hot flashes disappeared. Hey, I’m happy!

Wrong. Dr. Myers tells me that the FDA is about to require a warning label on Megace—a “black-box warning”—that will basically state that Megace enhances the likelihood of osteoporosis.

I already have osteoporosis. What the hell? Do I really want to take a drug that will encourage it? Fortunately, for me, Dr. Myers is ready with a solution: an estrogen-containing cream that I rub onto my legs once a day. It bypasses the liver, so there are no metabolic dangers and it also stops my hot flashes. Happy again.

I take Fosamax once a week to reverse the osteoporosis.

I also started taking large doses (400 mg, twice a day) of Celebrex. If you are curious, go to Google and type in “PSA Celebrex” and see what you find. Celebrex works against prostate cancer independently of any other treatment and may enhance the effects of radiation therapy. In my view, my risk of cardiac problems is minimal compared with my risk from prostate cancer. You play the hand you’re dealt. Celebrex also has a beneficial effect against some types of colon cancer. I care about that, too.

Side effects from radiation therapy that I experienced were mild nausea, solved with soda crackers and Tums; extreme fatigue like nothing I had ever imagined—I couldn’t drive a car, there were times when I couldn’t even stand up—and severe leg cramps. I learned to love Ben-Gay; I learned to love my wife even more as she would massage my legs. The leg cramps could reduce a grown man to tears; I know. Also mild blistering at the bottom of my spine from what are called “dirty electrons,” or electrons that missed their target. Not many of those, and side effects were minimal compared with Dr. Myers’ experience. He required 2 years to recover from 3-D conformal radiation.

Note: most side-effects lag treatment by 2 to 3 weeks. Remember that. They sneak up on you.

Enough is enough, already!

In October 2004 I have a CT scan to verify that all visible evidence of prostate cancer is gone. We have been striving for this moment, and the news is great: no evidence of prostate cancer! (This doesn’t mean that I don’t still have it. Prostate cancer forms “micrometastases” in bone and lymph. The trick is to keep them at the “micro” level.)

We have succeeded. For now.

Up and down in 30 seconds

However, the same CT scan shows an “unidentified mass” in my sigmoid colon. (Well, if I didn’t have PSA tests, do you really think I had colonoscopies?) I tend to be consistent, even when wrong. Further investigation (a colonoscopy, which really isn’t bad at all) identifies it as colon cancer, a 4-cm mass 30 cm into the sigmoid colon.

Sigh.

I respond to this just like I responded to the prostate cancer: “get this thing out of me!”

On December 3, 2004, I have colon surgery. This is not a walk in the park. I will skip recovery except to note that it was “difficult.” That word condenses a lot. Fortunately for me, colon cancer is fairly well understood. I have, roughly, a stage II colon cancer, which means that the odds of my survival are pretty darned good.

But wait! There’s more . . .(Part 9)

2005-08-21T11:56:00.000-05:00

Part 9

Another “however”

Yeah. Well. In order to give me the best odds possible, chemotherapy is recommended.

I really don’t like this, because, in the world of prostate cancer chemotherapy is often an end-stage treatment, a delaying action. It works for a period of time, and then you may pass on to another level of existence. So “chemotherapy” has for me become an emotionally loaded concept.

I call Dr. Myers after having sent him some web-based research that indicated chemotherapy was not necessary for stage II colon cancer and asked his opinion. He reminded me of his approach to treatment: you choose the therapies that are most effective for you and compare their side-effects with those of the disease that you are treating. He then told me, in a way that I could not misunderstand, that dying of colon cancer was an extremely unpleasant process.

Okay, I know what I have to do. In January 2005 I begin chemotherapy with a combination of drugs. One drug, Eloxatin (a platin drug), is stopped after a few weeks because I begin to develop peripheral neuropathy. This is a strange feeling; my fingers are numb under the nail beds to some extent, and my feet feel like they are calloused, although I have no calluses. Weird. We continue with increased dosages of the other two drugs, leucovorin and 5-fluorouracil, which are delivered via “portacath” or portable catheter, surgically inserted in my chest with a very small tube running to my heart. A portacath is roughly the size and shape of a bottle cap. The treatment continued for 6 months. I finished on June 28 and await results next week. I highly recommend a portacath if you are going to have this kind of treatment. Beats the heck out of puncturing a vein every week. Ouch!

During this time, I begin to act a little “flaky”. Okay, maybe a lot “flaky”. Read Part 10 to discover another sneaky little . . .

2005-08-20T11:36:00.000-05:00

Part 10

There’s tired, and then there’s . . .

Roughly halfway through chemo, I begin just staring off into the distance for minutes at a time. Not surprising. Chemotherapy affects my brain as well as my body. I become slow to think and react, as well as, once again, very tired. This time, naps do not help; I am tired all of the time. Waking up is a chore; I can’t seem to get enough sleep. I’ve only just recovered from radiation therapy.

“Chemo-brain,” as those of us in the know like to call it, is a very real, sneaky, little symptom. Effects are at first subtle. Eventually, I either notice (or have it pointed out for me) that I am no longer connecting my “mental dots” with any particular skill. I am slow to respond to questions, because I am reaching for information that just isn’t so easy to find anymore. I find that I lack the skills to drive, to program my video recordings, and even to keep up with daily conversations. I make decisions that are somewhat lacking
in sense.

Rule number 5: Keep a sense of humor

In addition, I recall having “philosophical” discussions with my sons about what creates the unique personality. Lack of testosterone plus chemotherapy has a profound effect upon my personality and abilities. I know that I am different, but I can’t do anything about it. The thing to do is to make certain that the people closest to me are aware of it, too—(1) so they won’t worry about me, and (2) so they will help me function better.

I will need their help and understanding.

My wife tells me I am looking “pretty beat up” and gives me lots of hugs. Hugs help a lot.

My wife is an angel; she has never left my side during this whole experience. And at times it has been really ugly.

Rule number 6: Ask for and accept help. You can’t do this by yourself

At my most recent appointment, Dr. Myers notes that I’m showing signs of depression. I say, “no, I don’t feel depressed. I think I’m handling this okay.” And he tells me that what I’m experiencing is what he calls “medical battle fatigue.” And I think, “no kidding. I can buy that.” It is, actually, a type of posttraumatic stress disorder that occurs when you’ve maxed out—physically and emotionally. A mild antidepressant solves the problem.

Here is a neat thing if you are ever feeling depressed; it’s called Right Now. Click on the link below (works best with Internet Explorer 6) or copy and paste this into your browser:

http://dailymotivator.com/memberflash/rightnow.html

(Editorial note: You will want to turn your speakers on low, and you will probably need a recent version of Macromedia Flash. Internet Explorer works best, but if you are using a different web browser, you may need to install and run Apple's QuickTime and itunes. Click on the "back" button when finished.)

Rule number 7: Keep yourself in the now and don’t let your imagination defeat you

It’s been three surgeries, hormone therapy, radiation therapy, and chemo. Hormone therapy won’t last forever; eventually prostate cancer becomes “hormone refractory,” or resistant. I do not want to “teach” the prostate cancer cells to mutate, so I hope to stop Lupron shots in September of this year. Testosterone will, I hope, return to normal levels in several months, and my body will function at normal levels also. I may go on and off Lupron for years. I don’t know.

It beats the alternative and is a relative “piece of cake.” This has become my standard response to the query, “How’re you doing?”

"It’s a piece of cake.”

Well, sometimes, not always. . . . We'll talk about costs next.

2005-08-19T11:07:00.000-05:00

Part 11

The lessons

At present, I am taking over 30 pills a day; I stopped counting at 30. The monthly pharmacy bill, if I had to pay it, approximates $2500. I hit my insurance deductible for the year in January, so prescriptions are free. The largest portion of this theoretical “bill” is for Casodex—3 pills once a day (cost: over $800 per month). Casodex is necessary to form another part of what is called a “triple hormone blockade or androgen blockade” because Lupron—by itself—will not stop all testosterone production. My plan A is to do this for 2 years and then switch to a pharmaceutical regimen that will keep the prostate cancer in remission.

Skip the costs for surgery and hospitalization. Understand that I can work from home part time and that insurance pays the balance of my income. Aside from all that, annual costs for pharmaceuticals (shots and pills), if I had to pay them, are around $30,000. Even if you have not been somewhat affected by the tales of surgery, hormone therapy, radiation therapy, and chemotherapy, that number should provide some motivation to see your doctor now. My insurance plan is exceptional, as is my work arrangement. Think of the damage that you may do to your family’s financial security . . . enough said? Drugs range from the esoteric—to repair capillaries damaged from radiation—to the mundane, like lycopene (extracted from tomatoes and other food sources).

Testosterone will, I hope, resume production; and I will be back to normal. I will continue to be obsessed with my PSA and have regular testing.

My final Lupron shot is scheduled for September 13 of this year. In December I hope to begin the regimen to put the prostate cancer in remission. The number of pharmaceuticals will drop from ~30 to a handful a day.

So here I am. On August 9, I will find out how I am. Six days ago, I began to feel like myself once again. I have been very fortunate. I can walk a half-mile to a mile at a time, and my mind is clear once again.

And I do have a plan B. And also a plan C. I’m serious.

Rule number 8: Get checkups regularly.

The most important rule of all. It’s the reason for this post.

Again, please, no sympathy. It’s not useful and I hate it. Also, please don’t think I’m courageous. I am not. I’m just stubborn and curious. And occasionally stupid.

I will not permit these diseases to end my life. I have a wonderful wife who continues to amaze me and who has always been my best friend, a grown family—from whom I now learn and of whom I am so very proud, and two grandchildren whom I would like to get to know so much better.

And I want to retire in 6 years!

I suppose I could have continued to keep all of this to myself, but I would like to give more meaning to what has happened.

I can’t give medical advice; but I can point you to resources and suggest emotional and mental attitudes that may serve you best. If you want to get in touch, feel free to email me. Start to protect yourself now.

Thanks for listening.

Rule number 9: Learn to be patient while awaiting test results.

I will let you know how things turn out.

Postscript follows.

2005-08-18T10:57:00.001-05:00

Postscript

Ann and I returned today from visits to the medical oncologist and the radiation oncologist.

Both of my cancers are in remission.

Note: The point of this entire exercise is to remove as many cancer cells as possible and then control what remains. In my case, I started with surgery; others, with appropriate advice, may choose some other method. I then followed with radiation therapy to treat a lymph node and an area near where the surgery was performed, called the "prostatic fossa." At the same time, I took and continue to take Celebrex because evidence indicates (1) it may enhance radiation thereapy, and (2) it has an independent effect upon prostate cancer. Third, I followed with what is called a "triple androgen blockade," which may kill much of the prostate cancer cells that remain. When this regimen is completed, I hope to control the whatever cancer cells may remain with a few pharmaceuticals, diet, and lifestyle changes. This is called remission.

Whatever means you choose, choose wisely.

I will, of course, continue to have the appropriate tests done at the appropriate times.

Get your PSA test and have a colonoscopy performed. They're simple.

Please do not risk going through what happened to me.

-John

Click here for next page.

2005-07-31T11:05:00.000-05:00

A Note on Spirituality

The time came when I prayed, and I am not a very religious person. I don't attend church. Churches, to me, are institutions, and I am nothing if not consistent. I think that something greater than ouselves must have created this universe in which we live, and I hope that on occasion our prayers are heard. At the very least, I hope that there is something greater than ourselves; sometimes, we just aren't all that impressive.

Goethe said that "One recognizes only what one knows and understands."

If that is true, then no one can say with any certainty that there is no God.

Earthlights.(Courtesy Space.com)

Anyhow, I prayed--most often before surgery, and sometimes when the pain was more than anticipated.

I also learned to trust my wife with my life. (There were one or two nights when, in my mind, an uncertainty existed about whether I would awaken the next day.) My final thoughts those nights were of her next to me. I knew in my soul (or mind) that she would always be there.

These thoughts may be comforting to you:

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.
From Desiderata, Copyright 1952, Max Ehrmann.

So life goes on . . . (click here)

2005-07-30T21:24:00.000-05:00

So life goes on . . .

And I/we have changed.
My list of "important stuff" has been
seriously rearranged, for one thing.
Second, I find incredible joy in the hummingbirds, goldfinches, egrets, and herons on our lake.
I even take pleasure in the ravenous ducks and geese who threaten to eat all of the corn that we can supply. There is even a squirrel so sneaky that he rivals the best raccoons.

I find that I occasionally receive compliments such as "You're looking really healthy," or "Gee, you sure have a great tan." Well, I spend a lot of time sitting on the deck at lunchtime, and the 5-fluorouracil makes my skin much more sensitive to the sun. I think, "Well, it's the chemotherapy that gives me the suntan," but I don't say anything. And to me, the phrase "you're looking really healthy" is uncomfortably close to "My, doesn't he look natural?"
Illness and death; is there a need to deny them built into us all? I know that I have thought about mortality more during the past 3 years than during the past 50.

And this is as close as I would like to come for a while.

There have been other changes that aren't so welcome; I occasionally deal with "SVT" or supraventricular tachycardia. Try to say that fast. Big words that say my heart sometimes beats too fast and I feel weak. Stress-related. Imagine that. So I do simple meditation/relaxation excercises to control it; they seem to work better. The medicine prescribed just made me sleepy all the time, which is not a real "career-enhancer." And after 3 years of enforced inactivity recovering from surgeries, the low level of testosterone in my body, which keeps the prostate cancer in check at the moment, requires me to work much harder to recover my strength and stamina. I guess I shouldn't be too surprised. Sometimes, I tend to lose my patience, but then I consider the alternative. I am very glad to be alive. And I am ever so much more alive.

"Big things" have become smaller; "small things" have become much bigger and much more fun.

Jesse. My best buddy.

Family has always been important to me, but now I understand that immortality isn't an option, well . . .

My youngest son and daughter-in law moved to a home about 15 minutes away, instead of 4 hours away, about a year ago. Their move was planned for many reasons, but I have been most grateful to them for their companionship and help--especially during those times when we just couldn't do it alone.

I have learned to be with my wife. The changes in emphasis and direction in our marriage have enabled me to experience a level of trust and intimacy that I never imagined existed.

I am a very lucky guy.

And I don't intend to stop writing and sharing my life experiences as a survivor. I look forward to our future.

Parrots and real pink flamingos in Mexico.

2005-07-29T14:58:00.000-05:00

The Future

This is September 2005, and I hope to be back to work by the end of the month.

I have people who depend on me, not the least of which is me. I have made a promise to myself.

I began this story with a dedication to my Mom, who taught me to live my life with dignity and love.

Isn't that the point? To "find a way from the person you've become to the one you know you would have been"?

This winter, we will once again return to Mexico, to our favorite haunt, in a tiny bay, on the Gulf Coast.

Looking forward to that. See next page.

Favorite hangout.

2005-07-28T14:43:00.001-05:00

September 13

Today I received what I hope is the last of my Lupron shots for some time to come.

We also visited work and finalized arrangements for my return.

A return to normalcy. Good things. The cicada are lowering their voices, the birds are gathering for their annual search for a warmer place, and the sun is setting just a little sooner.

Changes. Time to prepare.

Ann has had to be responsible for too many things for too long.

I promised her better than that.

Now I will keep my promise.

It's been a long time. It's been hard, but it has been worth it. All of it.

My life is so much better.

Useful links follow.

2005-07-10T10:25:00.000-05:00

Useful links

www.prostateforum.com/default.htm

This is my physician's home page. Dr. Myers, a medical oncologist, is former Chief of Clinical Pharmacology at the National Cancer Institute. He now has his own clinic specializing in the treatment of men with prostate disease. His web page and newsletter contain recent research and nutrition guides for prostate cancer patients and those wishing to live a healthful life.

http://www.survivorstories.net/

A very good web page that looks at cancer humanely and from the patient's point of view. Click on the Foreword to the book; also visit the "War Room."

http://www.psa-rising.com/

A web page written with empathy for the layperson; it contains much useful information in the form of articles, first-person accounts, and links to other sources.

http://www.prostatecancerfoundation.org/

The Prostate Cancer Foundation is the source for major funding and research against prostate cancer.

http://www.prostate-cancer.org/aboutus/aboutus.html

The Prostate Cancer Research Institute publishes peer-to-peer articles by and for physicians and well-read laypersons.

http://www.psa-rising.com/caplinks/support.htm

A list of links of prostate cancer support groups that includes Man to Man and Us TOO, International, Inc.

http://www.prostatepointers.org/

One of the better reference pages, in my view, on the web; it is full of links to thought-provoking articles.

And one of my favorites for reading:

http://mystory.prostate-help.org/mystory.htm

Don Cooley's web page. Full of links and information from the time a man discovers he has prostate cancer to the choices for treatment.

http://www.drcatalona.com/

Dr. Catalona is a highly regarded urological surgeon and researcher.