A good friend who happens to be a doctor just sent me a link to a study about bone density loss (and resulting life-long risks of bone fracture) for men like me who are undergoing androgen deprivation therapy (what I call 'hormone therapy'). While I haven't read the entire text of the paper (yet) it is something to talk to my doctors about and see what their advice is. (I put the link to the abstract in the "helpful links" section too, and can share the entire text with anyone who's interested.)
Speaking of talking to my doctors, I saw my radiation oncologist recently and he thought we should start running PSA tests again to see what the levels looked like. Fine with me. But then he noticed that the urologist had used a different lab than he had used. So, he held off setting those up. I must have misunderstood, because I thought he was going to contact the urologist and settle who should handle what (if that makes sense). And so I waited to hear from one of them.
Silly me. I didn't hear from either doctor... and finally called the radiation oncologist's office and talked to one of the nurses who essentially told me that when radiation was done, scheduling of tests belonged to the urologist. And so now I need to call in to my urologist. But some part of me thought this was a cooperative effort. Turns out you need to manage this all the way. And I think that also means managing the research efforts and follow-up with the doctors.
That might sound like a slam, but I don't mean it as one. It's a disappointment to think that there are such lines of demarcation, and seemingly no overall manager of the case except for me (and my network...bless them!). I should have known, or at least expected this based on prior experience with managing medical treatment and information with my father.
But wait, there's more...
What are we supposed to do with information that indicates there are serious risks with some facet (or more) of this treatment? Does it mean that I should have made another choice? I think the only other choice presented to me was surgery, and the data indicated that I'd be back doing some form of the treatment I'm doing if I had chosen that direction. So what then?
I'm an active person, or at least I have been. I have expected to resume that activity (indeed, I am starting to do so). But now it appears that I have some increased risk of serious fractures because of the androgen deprivation. I suppose that means I need to do some research on trying to increase (or at least maintain) the bone density I have now. So, one more area of learning. Something more for my feverish little mind.
I've been trying to get out on my bike again, but as I found out this weekend, it will be a slow recovery. I was exhausted after a hilly 17 mile ride. Guess it's back to the flats and a slow build up of distance.
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ReplyDeleteI'm not a doctor. Strike that. I AM a doctor. When I find that the "Doctor" (NOTE TO SELF: when will you start using a capital letter on the word "doctor" when you refer to yourself) is acting like "NOT a Doctor," I make a small Doctor doll out of FIMA (bake in oven for 35 minutes at 235 degrees F), put the doll in a box, take a photo, seal the box, bury the box, then burn the photo, and MOVE ON.
[Photo of brass pointer hand] It is SO important to remember that in spite of all the electrical equipment these induhviduals use they actually KNOW very little about the tertiary and beyond level of question that EVERY patient actually cares about.
Here's my prescription: ingest 5,000 IU of Vitamin D daily (improves many things including uptake of calcium) and 1,000 MG of Calcium daily (see immediately preceeding parenthetical), THEN engage in non-impact multi-muscle movement exercise (see immediately preceeding parenthetical and follow its advice) -- included here are yoga, tai chi, and a wide variety of tantric relationship building exercises.
OK. The bottom line is that at some point you will either murder your "Doctor" or tell the induhvidual that s/he is a "doctor" because [insert factoid you know better than s/he -- this factoid can be "I'm surprised you don't know the answer to that question since it is a logical and foreseeable response to your treatment recommendations."].
And STILL, you will find that the "Doctor" is NOT embarrassed by his/her professional ignorance. In medical school, there is a class that produces this emotional lacuna -- it's called "Acting Like a Doctor." And the class you need to remember is "Practical Nietzsche -- Will Power Used With Wit and Charm."
(I'm thinking this comment is a long way around saying watch out for undeserved authority -- it's a silent killer.) UM
As usual, UM, your profundity and awareness of the mystical (and practical) refreshes these tired bones. And hey... you're right too! My disappointment with the doctors (small D) is just the point you make. Their awareness of the tertiary questions seems so limited and short-sighted and I expect more of them. The friend who shared the recent research with me is one Doctor (truly a big D) who cares beyond the end of his nose.
ReplyDeleteWhen I asked questions that were seemingly unrelated to the immediate day-2-day treatment I was greeted with blank expressions and (frequently) a sense of 'do I have time for this?' filled the room. But in some cases, persevering through the negative energy helped. I felt like I was some weird case because I wanted to know more, in detail, about what kinds of things this is doing to my body...and will continue to be doing to my body for a long time.
I suppose I am a bit odd..but you already know that! I love the bit about making a doll and the hole (har har) sequence there. Wonderful! I think, though, that I will give the printed picture to Katie to rend and tear before burning.
Trying to move on, dude. Trying.