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.

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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.

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 7º 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.

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.

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.

Beginning the search for a good oncologist

It’s been a month. I’ve had conversations with my primary care doc and his assistant. I’ve looked at the lab results. I’ve been doing some reading. Now, I’m getting back on the trail of a good oncologist who is not committed to any one treatment and can act as my medical reality checker in this journey.

My basic policy now is to avoid treatment as long as possible for these reasons:

  1. Most of the current treatments have a high probability of leaving one with unacceptable and irreversible consequences – at least for me.
  2. Medical science progresses and new treatments and medicines are being developed as I write this. Not hoping for miracles, but putting some trust on the advance of medicine in this field.
  3. I’m seventy years old. Being subject to serious surgery or radiation treatments has their own inherent dangers. I recall the urologist in New York who said the only way he would operate on a man over seventy was if both that man’s parents were also in the OR.
  4. A recent study published in the AMA Journal showed that of men with high risk cases, there was only a 5% difference in mortality between the ones who underwent treatment and those who did not.
  5. Something else is probably going to get me first.
  6. I value the quality of my life over the quantity of it.

Follow Up Visit, Breathing Room, and Buy the Book

Had a good follow up visit with my primary health PA today. The most pressing issue is these damn allergies that are keeping my nose stopped up and my cough going. I am now armed with information and medicine, along with a routine to finally get rid of the little buggers for good.

We talked about my desires and approach to PC. My PA put my wife at ease with the information that I have on spread outside the gland. I’d tried to support this notion before, but it’s good that she got the “official” word. I didn’t mind hearing it again either.

Given my age and the percentage and grade of cells found by the biopsy, I have plenty of time to monitor this thing and make some considered decisions.

In this case, time is on my side. More advances in medicine and technology will be made in the next few years, all to my advantage I believe. And, while that time goes on, I might get caught by the grim reaper in entirely some other fashion.

I must repeat. Don’t get rushed into anything you may regret.

Whenever the subject of prostate cancer comes up around men, and women too, the cancer word kind of takes over the conversation and perceptions of most people. As the authors of The Invasion of the Prostate Snatchers point out, for most of us, this should be considered as a condition rather than a disease with the reputation that cancer enjoys. But, I’ve seen this happen, the attitude and perceptions of those involved in the conversation always move toward doing something. Treatment. Cure.

I’ve not met many men who had PC, or have it, that were not moved toward some kind of treatment pretty early in the diagnosis stage. And, most did not fully understand the consequences of treatment.

Don’t let that be you. Buy that book and learn about what we are dealing with – the condition, and the industry that has developed around it. The Invasion of the Prostate Snatchers. A most significant and important book.