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 MartinPosted with BlogsyPosted with Blogsy

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Another Day of Not Much Progress

Last night I got notice from my Weather.com app that there is a winter storm warning posted for our area beginning tonight and running through Tuesday late. Thirty mile per hour winds accompanied by up to 3″ of snow means treacherous travel. So, I had to reschedule my appointment with the Doctor in Pueblo to review the results of my bone scan/x-ray. Another week of waiting since he won’t talk via phone. I think something needs to be done about this process; it’s certainly not patient friendly.

I made another call to my primary providers here asking for a meeting with them to discuss my condition and medical case. I’m wanting some help and coordination from them to make sure I am getting good and appropriate medical referrals and care. I need another intelligent and sympathetic brain or two to help me work my way through all of the information and choices before me. I once again got the assistant’s voice mail.

It is beginning to appear that the patient is isolated from doctors by a screen of administrative assistants, processes and voice mails. Why is this?

I’ve been supplied with more information about PC, diet, types of treatments, resources, help lines and other information by my daughter than I have by the three physicians and their assistants I have so far seen.

My next step is to work with the PCRI and local support groups for more information and resources.

This afternoon, 17:30 hrs.
After leaving three detailed messages since Thursday afternoon, I got a call from the physician’s assistant. She evidently had not listened to them, or was not given their content because she asked questions and made assumptions to me that she would not have had she done background work before she called, i.e., not understanding that I had found my own endocrinologists and made my own referral appointment, saving myself about two months. She showed no real concern for me and my health issues, although she has been directly involved in them from their discovery and through some of the testing and referral processes.

I asked for a meeting with her and the doctor whose supervision she works under but she did not “see the point” in me talking with both of them. I asked her to set up a meeting or appointment with the Doctor then. She agreed and said she would call with that information.

I also did some elementary research on the Urologist who initially did the biopsy and diagnosis. I found that he is a graduate of a “uniform services” institution, which has less than satisfactory national ratings, has been in practice less than ten years and, from what I can tell, works out of at least four offices. He refused to discuss the results of my bone scan, done last Thursday at his request – results available to him on Friday – even to the small degree of “good” or “not-good”, insisting that I make an appointment to see him personally and drive an hour into town.

I know from a form sent to me by an Radiologist office that a patient may elect to have detailed discussions via the phone, or even have a doctor leave detailed messages on the patient’s answering system. There was no hint or discussion of this with the urologist.

I have decided to fire him, and find another who has more experience, a better doctor-patient attitude and shows some medical empathy. I discussed this with my local physician’s assistant (see above). I also told her I was willing to travel within the state to get a good one. I do not know if she will research this and offer help or resources for this or not.

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.