Yesterday I had my regular appointment with my hematologist. I am now nearing the end of my fourth twenty-eight day cycle on pomalidomide (two cycles at a low dose of 2mgs/day, now on to my second cycle on the regular dose of 4mgs/day). I have not had any of the signs of a bad reaction to the drug (which is related to lenalidomide, the drug that I could not tolerate in the spring of 2012). So far the blood tests have shown that the free light chains are staying fairly stable. While they have not dropped significantly (i.e.: below our goal of less than 100) they have also not gone up significantly (they are between 140 and 240 at this point). My doctor says that while he would ideally like them to be lower this is still a good result (given they were at 1600 when I was diagnosed and have been back up as high as 700 during the past few years). We will continue to monitor the free light chains and continue with pomalidomide so long as it can hold the free light chains relatively stable. The main concern is keeping the amyloids as low as possible to prevent amyloid disease from affecting my organs. Amyloidosis is a hidden disease that does not show itself until there is obvious organ damage. I am fortunate that we discovered this before any damage has been done as it has has given us the opportunity to undertake preventative treatment. It turns out that because amyoidosis affects so few people it is an orphaned disease in the research community where there is little incentive for researchers to invest time and resources into understanding and treating it.
I am to see my doctor again in three months. In the meantime, we will continue to monitor the free light chains with monthly blood tests. I will stay on pomalidomide (daily for 21 out of 28 days) and dexamethasone (steroids every Monday). The main side effects continue to be the weekly roller coaster ride on dexamethasone, along with weight gain. While I am not thrilled to be living with steroids I am grateful that, along with pomalidomide, the steroids are controlling the production of amyloids in my blood and that this is lowering the risk of suffering organ damage that would bring with it much worse symptoms.
a preacher's scribbles on gospel and church while living with Multiple Myeloma, Amyloidosis and Alzheimers Disease.
4/21/15
4/3/15
ecce homo
(A Good Friday sermon preached at St. Anselm's Anglican Church on April 3, 2015)
Labels:
christian year,
holy week,
sermons
3/11/15
notes on first peter four
When we gather on Thursday evening we will read the fourth
chapter of the First Letter of Peter. Come with your questions and insights.
Here are some questions to consider as you read …
Labels:
study groups at uhill
3/5/15
fifteen hundred sundays
I have been preaching most every Sunday for thirty-five years. It means something like fifteen hundred Sundays by now ... and fifteen hundred sermons. Counting the sermons in Holy Week that are coming up I think there are fifteen sermons to be preached before I step out of the weekly rhythm that I have been in for three and a half decades. I find myself thinking back to my first weeks and months as a preacher when this all seemed so strange and new and difficult. Now it feels so familiar and habitual and ... difficult!
Labels:
scribbles,
sermon notes
3/4/15
notes on first peter three
When we gather on Thursday evening we will read the third chapter of the First Letter of Peter. Come with your questions and insights.
Here are some questions to consider as you read …
Labels:
study groups at uhill
pomalidomide (cycle two)
First off - for those who can catch it later today the Multiple Myeloma Research Foundation is live streaming the concert "Cancer Blows" from Dallas, Texas. Here is the link. Ryan Anthony, Dallas Symphony Orchestra principal trumpet and former member of the Canadian Brass, was diagnosed with Multiple Myeloma last year. This concert brings together many trumpet players in raising awareness about the disease as well as fund-raising for research into treatments for multiple myeloma.
On more mundane matters, I am coming to the conclusion of my second twenty-eight day cycle on pomalidomide and dexamathasone. Cycle three begins this coming Monday ...
On more mundane matters, I am coming to the conclusion of my second twenty-eight day cycle on pomalidomide and dexamathasone. Cycle three begins this coming Monday ...
Labels:
multiple myeloma
3/1/15
on being a catholic church
On a recent Sunday in worship I could not help but notice how very catholic our singing has become. A gathering song by Fanny Crosby, blind author of over eight thousand gospel hymns and songs was followed by an opening hymn of praise from Ambrose of Milan, the fourth century doctor of the church who introduced hymnody to the western church. The Singers (our choir) offered the contemporary hymn “In the Quiet Curve of Evening” as a haunting and inviting choral introit. There was a sung Kyrie from the intentional Christian community at Iona and the “Asithi Amen” from Africa. The chorus of the traditional French carol “Angels We Have Heard on High” provided the Gloria. A hymn by Joachim Neander rooted us in the Protestant Reformation while a setting of Psalm 91 by Michael Joncas connected us with twentieth century liturgical renewal in the Roman Catholic church sparked by Vatican II. Our children led us in singing the Lord’s Prayer with embodied actions. The text for the day from Isaiah 40:31 brought to mind a popular chorus – “Those who wait upon the Lord” – and when it was sung we told the story of its author, Stuart Hamblen, the once famous singing cowboy, among the first of Billy Graham’s converts, whose transformed life surprised and confounded many in his time.
Labels:
catechesis,
christian year
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