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Guy’s Story

I have been diagnosed with multiple myeloma, and, on this site, I will provide updates as I have them.  I will also treasure messages of encouragement and promises of prayer. I am trusting the words of Juliana of Norwich:

God did not say: You will not be troubled, you will not be belabored, you will not be disquieted; but he said: You will not be overcome.  God wants us to pay attention to those words and always be strong in faithful trust, in well-being and in woe, for he loves us and delights in us, so he wishes us to love him and delight in him and trust greatly in him, and all will be well. . . . [The Lord says most comfortingly]: I may make all things well, and I can make all things well, and I shall make all things well, and I will make all things well; and you will see yourself that every kind of thing will be well.




Latest Journal Update

Unplanned Clinic Visit and Continuing Lessons on the Illusion of Control

I had a Zometa infusion last Monday, and, as I anticipated, had flu-like symptoms for a few days.  They lifted enough for me to enjoy my time this past weekend with the good folks of the First Baptist Church of Raleigh, where I preached on Sunday.  But, the rash I have had--the one I assumed was caused by Revlimid--intensified last night and today.  After a good meeting this morning at Mars Hill University, I had to make an unplanned visit to the cancer clinic. The rash had become quite diffuse; my skin was swelling, and the itching was nearly unbearable. I have had a cluster of other symptoms lately that were quite concerning: dramatic dips in an already-low blood pressure, dizziness (even while sitting), enervating fatigue, confusion, and sharp, nearly electrical pain at weak points in my back. Based on some research I had done, I asked the wonderful caregivers at the clinic to consider that we had blamed the wrong drug (Revlimid) for this long-standing and worsening rash. Turns out that Zometa causes all of the side-effects I cite in 10% or more of users. 

I had I-V steroids and now have a round of oral steroids to take.  I need to double-up on some other medications until the worst passes. One problem is that Zometa has a long "half-life."  So, even though I won't have the mid-April infusion, it will remain active in my system for a good while.  It is actually good news if Zometa is the culprit, rather than Revlimid. Revlimid is a nearly-essential drug for MM patients. Zometa is helpful for those who can tolerate it, but not as crucial, and there are alternatives to it. This issue will be one of the items I will discuss with my oncologist next week.

I keep learning how little control I have.  It's mostly an illusion. I have known that truth intellectually for a long time.  I am now learning it viscerally and existentially.  Whereas I could, for a time, summon the will to push through or toward most anything, there are plenty of days now in which I have more than one moment when merely remaining conscious and on my feet is an achievement.  These moments pass, of course, and I am able to resume the work I am doing or the walk I am taking or the racquetball game I am playing, but until the feelings pass, all I can do is make myself breathe deeply and hope.

When I pulled into the clinic parking lot today, I thought how often I had been there in the last 12 months, plus day-after-day, for a few weeks, at Duke this summer for the stem cell transplant.  I wondered how many times I have had blood drawn, infusions done, injections given, and oral medications prescribed.  I have lost count of how many times I have given a health-professional my birth-date to confirm my identity, how often I have cringed at the fiction--a useful one, I guess--of reporting my subjective experience of pain in an ostensibly objective way by converting it to an imaginary LIkert scale (1-10, 10 being most severe), and how regularly I have reached new lows of energy.  I can't always manage nausea, or prevent fainting, or hold-back tears.  I have lived at the mercy of Frank (MM) but by the mercy of God and of God's instruments--the caring people on medical staffs and in communities of faith and friendship of which I am privileged to be a part.

My good friends tease me (rightly so) about how impossibly stubborn I am about recognizing limits of time and energy, about slowing down, and about surrendering the illusion of control. In fact, they teased my about those things before I was diagnosed with cancer!  I can feel in my bones, though, that my body is teaching me what I have been reluctant to learn from my mind and emotions. 

It is an act of faith--a risk of trust--to acknowledge that control is not a human possibility, and, therefore, not a human responsibility. In fact, my body and Frank are challenging a subtle idolatry I never meant to maintain, the idolatry of thinking I could be god over anything or anyone, including myself

Paul knew that "self-control" is a fruit of the Spirit, not a human achievement. Self-control comes from yielding control, even more deeply, to the Spirit.  In every way, God is God and I am not.  It's a confession, both of idolatry and faith, I made again in the clinic parking lot again today. 
 
   
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Comments

29 Comments

Rebecca Wooten
By Rebecca Wooten
Continued prayers for dealing with Frank!! May you continue to research and study your own body and health! Continued prayers and love from our family!!
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Barbara Barner
By Rev. Dr. Barbara Starrr Barner
Thank you Dr. Sayles for sharing your journey with us. I wish I'd known you were preaching in Raleigh last Sunday. I would have made it my business to be there.
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jim lyle
By jim
my first thought is that we focus on survival and we have little sense of the cost of survival. not a bad thing, but it does sober one when the time comes to pay the piper. still, the fact that you are willing to pay the price and not berate G-d on the worst of days allows a wisdom and a ministry that is wider and deeper than perhaps you've ever had before, you think? haven't been there so can't say for sure but hope is true. life goes on, uncontrollably
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Jimmy Gentry
By Jimmy Gentry
Thank you, Guy. Your transparency shines forth in this honest and penetrating word. Your courage inspires me to be more thoughtful about "control." At this moment I see you in my mind and in my heart I am presenting a prayer to the Father for you.
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Kara Kelley
By Kara
And prayers do continue...as does God's presence...tenderly whispering encouragement and love...even in the clinic, hospital, or parking lot...
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linda johnson
By Linda Johnson
You give me so much insight Guy. Thank you so much for posting your thoughts. May the Holy Spirit continue to use you as a means to strengthen our faith, trust and love.
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Deborah Kloos
By Wes and Deborah Kloos
I can't help but remember the "mantra" or prayer you taught us, "I am here, you are here, we are one." When you hurt, we hurt. You also taught us that God has given us everything we need to live the life He is calling us to live. I pray you will feel our Lord's loving arms beneath you, holding you up.
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Julie Fortney
By Julie Fortney
Guy, When I read your "letter to the people in your life," I am overcome by the way in which you relate what is happening to you through your illness and the thoughts that go through your mind at the most unexpected times such as driving into the clinic parking lot!. Most of what we know about cancer remains rather clinical until it is happening to our family and friends. Then it is acutely present and we find ourselves hanging on every word, hoping to understand just how profound an experience this form of "letting go" actually is. Know that you are ministering and that you are telling your story in ways that only those who are living through the experience can do. We are blessed to know you. May you be filled with peacefulness and ease, may you be well.
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Brenda Denton
By Brenda Denton
I like Krista's reminder of Jesus' words,"Come to me, all you who labor and are heavy laden." My prayer today is that His promise of "rest" come to you. You continue to bless us all. We love you. We hate what you are going through. May you feel God's love lifting you, holding you, and giving you strength.
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Anne Hunter Eidson
By Anne Hunter Eidson
Guy, your honesty, courage, humility and devotion always, always inspire and teach me. Thank you. Prayers for wholeness continue.
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