The Way Out

I was recently diagnosed with prostate cancer. I am seventy years old, so this really came as no surprise. Unwelcome news, to be certain, but all of us who have reached this stage in life should be prepared for such things. I knew probably what most men know when they get the news: not much. This is not a satisfactory state to be in, so I've set about learning as much as I can, and am setting the chronicle of my journey down here.

One of my favorite stories came from the TV show, The West Wing, in which Josh is dealing with PSTD and wants to know why Leo is standing by him. Leo tells the story of a man who fell into a hole and could not climb out. He asked passersby to help, but is ignored until a friend comes by and jumps in the hole with him.

"What did you do that for?" the man said, "Now we're both stuck down here."

"It's OK," the friend says, "I've been down here before. I know the way out."

There are many other people out there who know the way out and I will be forever grateful for the guides I have found, and will encounter, on the way out. I hope to become a guide as well through the pages of this blog.


Friday, December 19, 2014

If It Had Been a Snake...

My grandmother used to say to me, when I was looking for something that was obviously around but I just couldn't see it, "If it had been a snake it would have bit you." True enough.

I used to think this applied only to physical objects that had been placed so obviously in view that they disappeared, but now, having been through the radiation therapy part of my cancer battle (we won't know if it is 'cured' until later, if ever), I think that the snake analogy works for other, more important and non-material aspects of life. Like, living it.

I've read a few books quite a number of times, books that have a particular resonance with me, and Hemingway's The Sun Also Rises is near the top of that short list. I am reading it yet again, finding things in there that, while I must have previously read them, didn't stick in my memory. One of those is where Jake Barnes is thinking about life. He says,

"I did not care what it was all about. All I wanted to know was how to live in it. Maybe if you found out how to live in it you learned from that what it was all about."

After years of reading and searching and talking about life and it's possible meanings for me and everyone else, this was like the snake that could have bitten me.

There are a gazillion interpretations and beliefs of the meaning of life, including Monty Python's, and, obviously they can't all be right. I suspect that it is an unanswerable question and has no real meaning in respect to how and why a human lives. I certainly don't cotton to anyone else telling me what life means and how to live mine. How could they know? I discount supernatural answers, forces and beings from consideration. That's the same as saying we don't know.

Now, after hearing the doorbell of mortality ringing, ringing for me, I think the answer to the meaning of my life is like that snake, only, this time it bit me. Yes, now I want to understand how to live in it, and maybe, as Jake thought, that might teach me something about what it is all about

Monday, December 15, 2014

Next to Last Day

Tomorrow will be my last radiation treatment day. Aside from some urinary changes and increasing fatigue I am handling this OK. In fact, I have come to the notion that having prostate cancer has been a kind of wakeup call for me. We all know that everyone is going to die, but somehow, that doesn't apply to us. Well, when you get the cancer greeting, that exemption suddenly expires.

Why would this be a good thing? It could be worse, and it provides a good reality check. Just what the hell are you doing with what's left of your life? Waiting for something so that something else will happen? Putting off dealing with that little dictator in your head that talks to you all of the time about crap you really should care less about? Beginning to wonder what actually happens to people, or the consciousness that identifies individual people, after they die? More importantly, wondering what kind of life one wishes to lead during the time left. That's what PC did for me. Woke me up.

 

Be Cheerful, sir.
Our revels now are ended. These our actors,
As I foretold you, were all spirits and
Are melted into air, into thin air:
And, like the baseless fabric of this vision,
The cloud-capp'd towers, the gorgeous palaces,
The solemn temples, the great globe itself,
Yea all which it inherit, shall dissolve
And like this insubstantial pageant faded,
Leave not a rack behind. We are such stuff
As dreams are made on, and our little life
Is rounded with a sleep.

- Prospero
The Tempest
Shakespeare

Well, everything in the world has been bloody sanitised with health and safety, hasn’t it. There isn’t really anything left in the world where you can go out and actually kill yourself. I like being in control of my own destiny, really. You can go out racing on your bike, make one little mistake, and that’s it: you’re dead. I love all that. Being so near yet so far.

Guy Martin

 

Tuesday, December 9, 2014

Twenty Down, Five to Go

It's been pretty routine so far. Today I finished treatment #20. Five to go and I'm ready for that. I've suffered few side effects, other than being separated from my wife and home for too many days, living here in Colorado Springs during the week. I could feel it today. I had a good night's sleep and still awoke tired. I sometimes nod off watching a video. I yawn more than I used to.

So, today I think I'll climb into the car and go back to my Japanese restaurant and treat myself to some good food. I'm keeping my weight pretty even, which is sometimes a problem especially on the hormone treatement program that I am also doing.

For any of you in my general situatioin, I'd say it's important to do new things. Get outside. Excercise and get your mind involved in new things and new situations. Break the path to depression.

Monday, November 24, 2014

A Lonely Weekend and a Broken Car

So, bad news follows bad I guess. I took the car into the dealer for a checkup while I am living here in the "big city" and was told that it has problems. It's running and all, but sometime not too far down the line, it will need some serious maintenance. Now, I love my car. I've had it since it was new and it's served us well. Besides, it's fun to drive, but it's also approaching eleventh year and major issues can be expected. So, on top of everything else, I have been car shopping, which, as you know, can suck. I've finally narrowed it down to two dealers and am looking for the best price. Now, all I have to do is figure out how to pay for it.

I stayed here over the weekend because we are moving treatment up to Sunday so that I can leave for home after my Wednesday treatment and spend Thanksgiving there. I'm really looking forward to it. I miss my wife and home and need a break from this routine. Up in the morning and make myself have a good breakfast. Make sure I drink enough water before the treatment so my bladder is extended and out of the way of the radiation beam. Walk across the street. Check in with my own bar code badge and wander down to the radiation reception. I'm beginning to see familiar faces waiting their turn.

Last week while I was waiting, someone down the hall struck a large bell three times. The sound rang though the ward and people applauded. Hanging near the entrance to the radiation area is a real, brass bell with a small hammer attached. When a patient is done with the course, he or she gets to smack the bell three times, signaling that their course is over and they are going home. Man, I'm gonna smack that thing pretty soon.

This weekend has shown me that the most difficult part of this so far is the fact that I have to be away from home and from my wife for five weeks. Living alone is not what some people fantasize. I've had friends tell me that they would love to live by themselves but I think now that they don't know what they are talking about. If that's the way one has been for years then it's probably no big deal (but I might not believe that either) but for me, not having my wife and friends around, not being in my home or own bed at night is more like punishment. Sure, you can go visit a museum, eat out, go to a movie, walk in the part, wander around downtown keeping an eye on the crazoids, but when that's done, where do you return? To a small empty apartment with really nothing much to do.

OK, pity party over. I've got only two more days and I get to go home. For a while.

Saturday, November 22, 2014

In Treatment

Since my last post, I've essentially moved into the John Zay Guest House in Colorado Springs which is across the street from the Cancer Center at Penrose Hospital. We found this place by my doctor telling us that the hospital has a place where I might stay during my five weeks of radiation treatment. I had a kind offer from a friend to stay at his place, but it is half an hour or more outside of town and, being winter here, the daily commute to get my treatment might have been subject to the weather. In fact, the first week I was here was extremely cold and, of course, snowing. Here, at the John Zay House, I only have to walk across the street, and believe me, when it is 7ยบ outside and the wind is blowing, it can be mighty cold.

The hardest thing about this is not the treatments, they are relative quick and painless even though they have to be done regularly. It is the need to be away from home and my wife. She is so important to me, and such a support, that being half way across the state from her is hard. I'm sure it is hard on her as well and I so much appreciate her taking care of our home while I'm here.

The house here is full of people undergoing various health issues, or supporting family as they go through healing and treatment, so we share a lot in common. One thing, of many, that has come from having and dealing with cancer is that I am much more open minded and polite that I was before. Dealing with a serious illness, or condition (I don't feel particularly 'ill') is that one's perspective on life and what it is about changes. Moreso than in the obvious ways. There has been, with me, a subtle and fundamental change in how I fit into and relate to the world. I don't think there is any reason why I, or anyone else, exists but I do think I have an obligation to be kind and helpful and as little judgemental as I can be. This, especially for me, is not easy, but understanding that we all have a short time on the earth and what we do here amongst our loved ones and neighbors is important to the quality of our lives and perception of ourselves is making me a better and more peaceful person.

Every day I walk to the Cancer Center, check in with my own bar-coded badge and walk back to the radiation thearpy area where I'm always greeted cheerfully by the technicians there. When my turn on the machine comes, I get my warm blanket and lay back on the table. My feet and legs are supported by shaped dense foam pads and I'm given a large foam donut to hold. This keeps my hands occupied and my arms from floating around. When the treatment starts and the machine moves, clicks, whirrs and whines around me, I have found it easy to begin a kind of meditaton in which I concentrate on my breathing and the environment around me. When thoughts come, I recognize that there is a thought, then somehow send it on its way recognizing it is a thought and not the thinker. I manage to become, for brief moments strung together, part of the world around me, not apart from it, an observer, but more of an experiencer. Difficult to describe.

Soon, some indeterminate time after it's begun, it is over. I leave and walk to the hospital cafeteria for lunch. It's a good place to eat since they offer both nutritious and mostly well-prepared food at very reasonable prices. Then I have almost twenty-four long hours before I get to do that all over again.

Friday, October 31, 2014

Tattoos

I don't have any tattoos, even after eight years in the Navy and traveling around most of the world, I managed to avoid them. Not that some aren't interesting. A good friend in the Navy, Chuck Soper and I, used to visit the tattoo parlors on Broadway in San Diego and watch the sailors and Marines getting inked there. None of the available tattoos were really appealing though and we never got drunk enough to just get one for the hell of it.

A few years later when my ship pulled into Pearl Harbor I went to the sub base to visit Chuck who had been stationed there after our various fire control schools. At lunch, he showed me his new tattoo. Seems he had gotten involved with a local woman who knew this old Chinese tattoo artist in Honolulu. The man was a traditionalist and made his own tattoo needles from bamboo. He laboriously pricked the ink into the skin by hand, working from his own designs. Chuck had a marvelously done dragon entertwined among bamboo. I loved it. But, learning that it had taken a couple of months to complete, and me having only a few days in port, it was not to be.

My wife got a tattoo in California when our children were young. A nice bracelet with two pendants engraved with the initials of our kids.

Now, on Monday next, it appears I'll be getting my first tattoo. I'll undergo a "dry run" for the beam radiation treatments that will locate the exact area to be zapped during the upcoming real treatments. To mark the spots, small tattooed dots will be place into my skin. Not exactly what I had in mind, but you have to go with what works.

I have been considering getting an actual artistic tattoo to commemorate this part of my life and to remind me of what is important and inevitable for all of us. I'm leaning toward a colorful representation of The Day of the Dead sugar skull. We celebrate The Day of the Dead here in the southwest USA because it is a time of remembrance and respect for those who have gone from us. It's a journey we all must make and the life we lead toward that end is important. This has become increasingly obvious to me of late.

Something we all should consider when we are sidetracked by life's clamor and craziness that is really irrelevant to living a good life as we can.

Tuesday, October 21, 2014

Treatment Begins, and what's happened over the last year...

It has taken over a year to get to the point that I found two critical things: doctors I can trust, and enough information, reliable information, to make informed decision for myself.

The most important thing to say here is that you must take charge of your own care. I'm going to be blunt. There are physicians, specialists mainly, who will not provide you with the full picture and guide you to the alternatives available you so that you can make your own, well-informed decisions about what treatments are appropriate for you. Some are operating from their own agendas which may not be in your best interests.

The majority of the time between my initial diagnosis and deciding on doctors and treatment was consumed in finding relevant information then in locating and seeing an oncologist who specialized in prostate cancer (PC) and was not allied to any particular field or specialty practice. My worst experiences were with urologists. Picking up where I left off with my previous posts, the short version is this:

I went to a respected doctor, recommended by one of PCRI support people who had heard this guy talk on PC for a second opinion. When I walked into the place, I discovered it was a urology clinic. My first impulse, which I should have followed, was to immediately cancel the appointment and leave. I stayed. The urologist, who will remain unnamed here, met with me. I had taken care to ensure that all of my medical records, biopsy report, etc. had been sent to him weeks ahead of my appointment. It was immediately obvious, watching him scan through the computer in the exam room, and from the elementary questions he asked me, that he was familiar with none of the material I had provided to him before my visit.

Worse, I had been assured that I would be meeting with a team of different specialists and getting a good review from different medical perspectives. This didn't happen, or if it did before (or after this ill-fated visit), I am not assured how it was conducted or what was actually said.

At one point, early in my visit, he told me that although he recommended treatment, I really had nothing to worry about for the next five to seven years. Plenty of time to decide what I wanted to do. Then, later, he said I should have treatment within the next six months. What treatment? His, of course. He then launched into what I can only term as a sales pitch for himself and the kind of surgery he was skilled in – old-school hands-on surgery, not this new-fangled robotic surgery. (That was the favorite of my first urologist, even though he was not old or experienced enough to have been good at it, as I later discovered. He was also a rude jerk whom I quickly fired.) This urologist then commenced to denigrate not only robotic surgery, but most other kinds of recognized treatments: radiology, hormone, bracheotherapy (seed implants), etc. He assured me he had done hundreds of hands-on surgical procedures and, for him, it was like cruise control.  I would be happy, he assured me, and suffer virtually no side effects.

Basic bullshit.

I left as soon as possible.

After more research and confusion, I contacted Dr. Mark Sholz in California and he agreed to see me. This was fated not to be. When my wife and I left on our trip from Colorado to California, we had serious car trouble and spent five days in Albuquerque, NM, while the car was repaired. I missed my appointment and burned through our cash and credit reserves in the process. Back to California. Further mis-adventures occurred in attempting to talk with Dr. Sholz, so we decided to find an experienced oncologist specializing in PC closer to home.

We were successful, and, strangely enough, found our man practicing now out of Albuquerque. After a few visits with him, I have begun hormone therapy and am scheduled to start external beam radiation for five weeks as a follow on. Afterwards, I will travel to Seattle for radioactive seed implants by a doctor I like and trust.

During this period, in Seattle, I had a thorough MRI to get a good look at the extent of the PC. This is a painless, though somewhat obnoxiously noise procedure and provides immensely better results and less risk than the needle biopsy.

If I have one thing to say about the needle biopsy to other men it is: don't do it.

There are much better and more accurate assessment methods than having your prostate punctured with needles and running the risk of infection. Besides, it's barbaric.

This is my status at the moment. I feel fine and optimistic about my future and the professionals I have finally found are good, caring and treat me like they would like to be treated as well. If your health care workers and doctors don't treat you like that, I'd say, move on and find those that will.