Focus, and Wonderful Resources

When you find out that you have prostate cancer, pretty soon, most of the petty crap that has taken up too much of your time anyway, falls away, and the mind becomes wonderfully focused on the more important parts of life.

For PC, as I have learned from my internet resources to call it, there are two main issues: the treatment, and the aftermath.

Treatment, at least for me, involves three approaches. One: surgery. Two: radiation. Three: nothing.

Aftermath involves, except for number three, unpleasant effects like sexual disfunction, bladder control and probably other unmanly things.

I’ve also learned that in my risk group, the odds of not surviving the first ten years after diagnosis are 1%. Or, put better, 99% in favor of still being alive.

So, before I choose and undergo a treatment with unpleasant after effects, I’ll be sure that I need that treatment.

I am coming to understand that my main focus is on my quality of life. It’s not just a matter of survival. None of us is going to survive life; that’s why it is a journey with a beginning and an end. What matters, I believe, is the kind of life you have. Or as Tolkien wrote:

Frodo: “I wish none of this had happened.”
Gandalf: “So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”

Wonderful Resources

My beautiful and smart daughter happens to be working in a health care field. After I told her about my PC, she quickly volunteered to help me with coordination of my care and to keep me connected to resources that will be very helpful. Right away she got me linked to the Prostate Cancer Institute, a most valuable resource. I will be making personal contact with one of their people on Monday. She stepped right up and is giving me the support and love that I need to get through this.

My lovely wife, partner and friend of over thirty years is right in there with our daughter, giving me the support I need, even when I don’t think I need it. I couldn’t do this without her.

Our son is also a big support to me. He is strong and supportive and will be here when I need him. He’s living far away but that’s in distance only. We are close and I feel his love and support across the miles.

Family. Where would I be without mine?

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Bone Scans

After a rather extended and clinical discussion with my doc on the first day that I received the news about having prostate cancer, I left with the basic information that my risk is, “moderate-low”. There was discussion of Gleason scale numbers, which are skewed to some extent in a manner that makes them rather difficult to understand. I did find out through other references, that the diagnostic procedures, tools and algorithms are all estimates. Some are estimates based on estimates. Oh, good.

The doc, as almost an afterthought, scheduled a bone scan x-ray at St. Mary Corwin hospital in Pueblo. I did this last week. It’s a relatively painless procedure. The tech/nurse was an artist with an IV. I actually did not know that the needle was in until I looked. “Working on the painless needle stick,” he said. Well, I think he’s got it down.

I laid out on a long table that fit within a moving apparatus shaped like a high-tech donut. Had to remove all the metal objects from my pockets, and the belt, but kept my boots and clothes on. Took thirty minutes for the scan, and I fell asleep a couple of times. Then, Barb and I had a Chinese food lunch and drove home.

Next day, the Urologist office called to schedule a follow up appointment. Well, I said, I’d rather have a phone consult since I have to drive two hours and spend gas money to sit in his office and hear the same thing he can tell me over the phone. Sorry, they can’t do that. I had her talk directly to the doc, but no, he won’t do that, so I have to go back in on Tuesday. They wanted to schedule the follow up out about three weeks, but I want the news sooner than later.

Since this is the time in our lives when we are routinely using phones, text messages, email and the internet for almost everything, I would like to understand the reason why office visits are necessary. Is is a liability thing? Are the lawyers and insurance companies at it again?

Getting the News and Fighting the Red Tape

April Fools Day, 2013. Of course. That’s also the day I got my official “you’ve been laid off” phone call from IBM. I was on the train going to jury duty in Sacramento at the time. This year I was in the doctor’s office in Pueblo, Colorado when he said something like, “you have cancer cells in your prostate”. This was after going to him because my PSA level had increased. That was the only symptom, so I wan’t really expecting bad news.

But, like Monty Python said, “no one expects the Spanish Inquisition.”

I’ve not freaked out, but somehow I’ve attained a calm and kind of rational perspective on all of this. I mean, I’m seventy years old, for Christ’s sake and you have to expect some problems with the body when you get into ‘advanced years’. As I thought when the doc told me, the old Rabbi said, “It could always be worse.” True.

I think the most disappointing part of this, at least to date, is the muddled manner in which my local health care providers are handling it. I have had to take charge of setting up my own referral appointments to specialists. The local folks don’t seem to be organized sufficiently to be both effective and pro-active.

Case in point: I also need to see an endocrinologist about my over active thyroid. My local doc took me of my thyroid medication last year – bad for the liver – but failed to follow up with referrals or other medications. Now, the thyroid is worse. OK. I’m seeing his assistant now, who is much more direct and proactive. She set up the referral. But, after a couple of weeks, I had no action, so I called in to check. Well, it seems the order for the referral didn’t make it into the ‘system’. Could have happened, could have been an excuse for someone dropping the ball. I’ll never know. So, they were to get on it and call me back with the info. A few days later, nothing. I called again. The assistant told me she was researching doctors and would send a referral to one.

I waited a couple of days, then, having not received a call from the endocrinology office, or my local providers, called in again. My local people had faxed the information a few days previously. I got the name of the endocrinologist office to which they had made the referral and called them. No, they hadn’t received the faxed materials. I made more calls and got this sent again. OK, they could schedule me in three months. Not good enough, I told them. I have to get the thyroid dealt with before I can proceed with cancer treatments. Too bad, they said. We’re booked up.

I turned to the internet and located an office in Denver. The doctors are all board certified and had good experience and recommendations. I call them and suddenly I began getting help. I explained my situation. The admin person got me an appointment, not in July, but in early June with the expectation that, once my medical materials were reviewed, they could likely get me in earlier than that. I shifted back into my project manager mode and made sure the Denver office received my medical information from both my local providers and the urologist office that same day. A few days later, the Denver office called and scheduled an appointment only two weeks out.

If there is a moral to this story it is to take charge of your own health care. No one is more interested in seeing that the right things happen in the right sequence and as quickly as required than you are.