The Lord of the Gentle Breeze is Lord of the Rough and Tumble
On this last day of 2015, I couldn't help but reflect on the first time I heard these lyrics. It was a dark time. And it was MY world that felt crazy. In the midst of so much I couldn't understand and no clear cut answers to my questions, I would listen to this song again and again in my car. And I would sing these words out loud: " What I need is to remember one thing, that The Lord of the gentle breeze is Lord of the rough and tumble." And those words would remind me that God had a plan and God was in control, even when my world felt out of control.
Those words continue to comfort me through every rough spot I come to. The same Lord who has blessed my life with gentle breezes of peace, tranquility, love and happiness, allows me to face the rough and tumble of adversity, pain, suffering and confusion. What I see and what I feel can leave me feeling anxiety and despair. But what is real is God's still on His throne. And sometimes we all need to be reminded that He is the King of the JUNGLE .... no matter what our specific jungle may be.
This past year has been a mixed bag of gentle breezes and rough tumbles for us. In addition to God's faithfulness, John and I are blessed to have each other, to enjoy a strong, stable, happy marriage, and to be surrounded by the love and support of family and close friends. Our blessings are easy to see.
On the surface, it might not be apparent to everyone that we are also in a battle.
Since 2007, John has been fighting blood cancer; chronic lymphocytic leukemia or CLL.
As many of you know, he has been in remission for five and a half years with a newer non-chemo drug that is now known as Idelalisib (or its brand name of Zydelig). John was one of the first to receive this drug in 2010, then known as Cal-101, in a phase one clinical trial.
We've been blessed with a lot of smooth sailing between then and now, which I have been so grateful for. His good health enabled us to pursue John's dream of having his own Honda dealership, which resulted in our moving to West Virginia where we have made so many dear friends. I still feel so at home in Nashville, but cannot imagine my life without the people and experiences I've been blessed to have in Beckley, West Virginia.
Over the past 14 months or so, John has been struggling with chronic pain. It began in late fall of 2014 and got progressively worse. He had nearly all the symptoms of fibromyalgia and we saw specialists in rheumatology and neurology to rule out any possible unrelated health issues. Once all else was ruled out and the pain did not resolve after a course of steroids for several months, it was concluded that the drug John has been taking since 2010 was causing his pain. It felt like it took forever to reach this conclusion. But we had to make sure. I completely understood that our CLL specialist did not want to take John off a drug that was working unnecessarily. But in recent months, it even seemed that the drug was less effective than it had been and John would have needed to increase his dosage if he had stayed with it. Because of his pain, increasing his dose was not a possibility.
So, last week John stopped taking Idelalisib cold turkey. And he began a 28 day wash out period in which he will receive no treatment until beginning another clinical trial with a new, extremely promising drug later in January. I will share more about that trial later (in another post).
We were told he might suffer some withdrawal, having flu-like symptoms and feeling pretty lousy for anywhere from a few days to a couple of weeks. But nothing could have prepared us for this past week. I've never watched anyone suffer withdrawal in any form, but I now have a deeper understanding and compassion for what it must be like for many. John has suffered tremendously. And he's not completely through it yet. On top of fever, nausea, pain, and sleepless nights, he's been plagued with chronic hiccups for eight days without relief. He has had brief breaks lasting from a couple of minutes to an hour. And every time they stop, we are hopeful they won't return. But so far, they have never stayed gone for long.
We spent several hours in the ER Christmas night trying to get pain and hiccups under control to no avail. They actually stopped briefly after pain meds, valium and a GI cocktail. But they started right back up as we pulled out of the parking lot at 3:00 am. We've tried Thorazine and numerous remedies friends have shared with us without any lasting results. Today he was prescribed a muscle relaxer. He's had two doses and the hiccups persist. We are both exhausted from lack of sleep, even though I know I have slept more than he has.
Dr. Flinn believes the hiccups are part of his withdrawal and that they will ease up over time. I hope they are behind him soon. I'd love to leave them behind right along with 2015 as we enter the new year. But even if it takes a little longer, I do believe the worst is behind us as far as the withdrawal sickness.
It's hard to watch anyone you love suffer. This experience has brought back memories of my mom suffering with terminal cancer; especially the nights I spent with her. Everything is harder in the middle of the night. I've also had flashbacks to different times when my dad was in bad shape after bypass surgery and in his Parkinson's battle. I remembered nights I spent with John's mom when she could have died from pneumonia in 2011. I have many care giving memories; too many to list in this blog post.
I'm thankful we got to celebrate Christmas with the kids before the onset of this terrible withdrawal. All our other Christmas plans had to be canceled. But the greatest gift is knowing that John is closer every day to beginning a new treatment that is not only getting great results, but proving to be well tolerated.
In a few weeks, this wash out period will be behind us and I believe John's CLL will be back under control without the chronic pain he's endured for all of 2015.
It's a small world these days. And the car business is a small world. John has heard from people through text messages who he hasn't seen in years because they've heard he hasn't been doing well. I at first tried not to mention anything about this on Facebook, to keep it private. But I wound up asking John's permission to ask my friends to pray because I was so worried about him. I would rather share what is actually happening than have rumors going around with only partial facts. And I'm thankful John was willing for me to share.
Many of you have prayed for us as we've been in this struggle. I can't begin to express my gratitude for all of you; your love, concern and prayers; the texts, phone calls, Facebook messages. We have felt your love and support.
God is good. He does indeed have a plan. He is Lord of the rough and tumble. And we trust Him.