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AMYLOIDOSIS

Until a few days ago I’d never heard of Amyloidosis. On or before March 16th an incision will be made under my left eyeball and a tool inserted to scoop some tissue from behind the ball. The idea of all this is to do a biopsy to discover whether I have another incurable disease. Surely one incurable disease is enough even for a Brit! Well it’s Lent after all. Amyloidosis is basically all about a protein we all have which cleans up our organs and then dies, but, in this case refuses to die and begins to destroy the tissue it has entered.

About three weeks ago, my eye lids began to get red and the pouches under my eye filled up. My eye lashes became coated in a light brown substance. This has happened before and gone away. But this time my vision became blurred and the other eye area followed suit but to a lesser degree. Then I began to see double. This helped in tallying the numbers in the pews.

One of my parishioners, a doctor at the eye center of the University hospital arranged for me to be seen. My oncologist ordered an MRI. It was then decided that I have a CT scan. As a result it was determined that the tissue behind my eyes and to some extend the optic nerve had something wrong with them. The suspect: Amyloidosis. Look it up on Google.

Once the biopsy is done, it will take a week for the results to get back and then a search begun to see if this wretched condition is in other organs or areas of my body. Then a form of treatment will begin together with continued treatment of the Waldenström macroglobulinemia I’m fighting. Neither disease has a cure, but treatment and monitoring can keep the beasts in their lairs for long periods of time. After all,people on death row can remain alive for years with sufficient appeals!

At the same time I’d been getting weaker and losing my appetite even though my blood tests are mostly positive.. My oncologist gave me two choices. I could be admitted to hospital and “worked on” or sent home to begin a regime of steroids until the new course of treatment is determined. So after being given a four hour IV of liquids and potassium, I came home. The steroids are working!

Do keep praying for me. My blurry eyesight makes writing and reading a chore. If I have to give something up, please God let it not be my vision.

Talking of “giving up” our Presiding Bishop has asked us to use Lent as a time to surrender up to God the requests the Primates have made to our part of the church as a sign of our intent to live within the Anglican family. This has let loose a barrage of comment from emailers, bishops and even seminary heads, some agreeing with the request, but most fighting the same old battle. The most extraordinary letters, at least to me, come from “liberal” bishops whose ecclesiology sounds rather like George Bush’s world vision. In a few words they suggest that we have no need to listen to those foreigners who don’t have our democracy. There are those on the right who sense that this is all a conspiracy. However for once I can report that the right is being better behaved.

It is being suggested by some that a Lenten season of prayer and reflection by all in some manner betrays gays and lesbians. But if we are all asked to pray, reflect and offer up the various issues surrounding our identity, our relationships, our calling and mission and our future, as Christians we are all being singled out. Lent is the time of self-oblation. We sing “Nothing in my hand I bring: simply to thy cross I cling.” No one was fair to Jesus.

At the end of a lenten sermon I wrote for SERMONS THAT WORK this morning I concluded:

All too often we grasp a “users’ faith”. “God loves me unconditionally and therefore in justice I should get…..” “I got saved and therefore I should have money.” We want a God who takes us as we are, lets us become even worse that we are now, and loves us despite who we have become. We want a God who gives. Do we want a God who dies?

2 Responses

  1. Fr. Tony,

    my prayers continue to be with you and your family. I’m sure it must seem like one thing after another right now… I have actually heard of Amyloidosis before, and I’ve been following the gallant struggle of an author I’ve enjoyed reading since grade school as he deals with it. He’s maintained a blog here throughout his treatment…perhaps it could offer some encouragement: http://www.dragonmount.com/RobertJordan/

  2. Dear Dr. Fr. Tony,

    My brother got amyloidosis too. We are in Thailand, there is no treatment in Thailand too. We are too poor to have a treatment aboard. We are waiting for the last day of live.

    Best regards,
    Jeeradate K.
    jkplan@yahoo.com

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