October 7, 2006

Commitment to reality

I’ve been pretending to myself, these days, that I’m not paying attention to research. I pretend I’ve accepted and adapted. Cure, shmure. I’ll be delighted if it happens, but I’m not holding my breath. I am fine; I am strong. I cope, I manage, I deal. I am Getting On With My Life; I possess a Healthy Detachment.

Hmm.

It’s come to my attention that what I actually do, these days, is to glance sidelong at the research news, pretending not to look but in fact making quiet note of every development. (It’s an interesting talent, reading websites without consciously acknowledging that I do so.)

I’ve had to confront my tendency toward surreptitious monitoring after last week’s news that the Edmonton protocol is essentially a flop.

In a nutshell for the non-D-obsessed, this experimental procedure entails a noninvasive transplant of islets, those little jobbers in the pancreas that make insulin in a healthy person. In type 1, the immune system mistakenly eradicates the insulin-producing cells, leaving their former owner with diabetes.

So: insert happy, functional islets from organ donors, salt liberally with immunosuppressant drugs, cross fingers.

Variations on this procedure have been attempted for years with limited efficacy, but the most recent study had encouraging results at 1 year following transplantation. About half of patients were manufacturing all the insulin they needed, and a large percentage of the other half were manufacturing some and achieving improved blood glucose control thereby.

Last week brought the news that at the 2-year mark, only 16% of patients were still functioning without insulin injections. It seems that the immune system continues to recognize the islets as invader cells and systematically destroys them. Unless/until more effective immunosuppressant drugs can be found, the Edmonton protocol is not a viable cure.

Certainly I had no conscious fantasy of ever receiving a transplant and a cure via this process. I’m more realistic than that.

But...crap.

I’ve written elsewhere about my mind’s habit of making contracts with the universe. What I realized this week is that I’ve done it in this area as well: If I do my job as a patient and forge ahead with gentle optimism and courage and blah blah blah, if I extend myself toward other PWDs and do my bit to help us all cope, I (and the rest of you) will be rewarded someday, someday, with the cure.

Truth be told, there is no such contract. There are no guarantees. Optimism may be mentally healthier than pessimism(?), but none of us can know if or when a cure may be found. There’s a tightrope to walk here—I suppose it’s properly called realism—that lacks the comforting safety net of my previous subconscious understanding with the universe.

So it’s time to renegotiate. What it must be, all it can be, is something like: If I do my best to take vigilant care of my diabetes, if I do my best to connect with others in my situation, I will be as physically and mentally healthy as I can be for as long as possible. In the meantime, a cure may or may not be found.

Bah. I liked the old contract a lot better.

5 comments:

  1. Chrissie in Belgium10/07/2006 12:33 PM

    The "new contract" is more realistic, although less fun. Heck, i have been hearing about a cure for so dam long...... When the different bloggers are introduced on the OC each say what they will do when a cure comes along. I think if a cure came along my first response would be: I DON'T BELIEVE IT! WHAT'S THE HITCH??? I have had for 45 years and I am so sick of hearing about the IMMINENT cure. Like you, for some reason, I continue to follow the news and hope? How stupid can we be? But look, the cure has to come some time!

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  2. Hey V,

    I too got kind of "burned out" on following all of the news. It's just sometimes complicated to follow, and I'm a fairly averagely intelligent guy, despite the super intelligent guy I play on the internet. :-)

    It takes energy to weed through all of the press speak, and figure out what it means for me. I'm often just too short in the energy department.

    I heard from a contact here at the U of M that they are working to kick off a HUGE islet cell study, and there was also news a while back about the "pig farm" that was set up in Wisconsin specifically for islet cells.

    My contact said that back before they new how to make insulin in the lab, they got it first from beef, then pork - so maybe the islet cells will follow the same (or similar) path.

    Who knows. But like Chrissie said - the cure has to come some time!

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  3. Violet--

    Reading this post, I found myself repeatedly nodding my head.

    I've been going through this very same renegotiation process.

    Yes, I like the old contract better.

    But this new one -- though it makes me really sad -- feels more right.

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  4. I don't think I have ever hoped for a cure. I guess I don't believe a cure is possible. I do hope for a better life though. Sometimes even that is too painful to hope for!

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  5. Hi, i would like to suggest considering one minor edit, to wit:

    "...islets, those little jobbers in the pancreas that make insulin in a healthy person..."

    Perhaps "nondiabetic" instead of "healthy"?

    As for a cure? Bah, humbug. i've been hearing that "the cure is just around the corner" for 45 years now, too. And i frankly don't believe that improved immunosuppressant drugs as they relate to islet transplantation are the answer, either -- to me, that's not a cure, that's just substituting one onerous routine for another.

    -tippytoes

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