Monday, September 24, 2012

Insightful Reading

We are back from a trip to the beach and although I was a little sad to say good-bye to the ocean, I am thrilled to be back home in "almost heaven...West Virginia."

While we were away I finished two books and started a third. All three of these books have impacted and inspired me, which is the kind of reading I love most. These are the books:

Jesus, My Father, The CIA, and Me: A Memoir. . . of SortsA Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty   A Father First: How My Life Became Bigger Than Basketball

You can click on the images for descriptions, so I won't give you a synopsis of each. And I have not finished Wade's book yet. But all three of these authors have amazing stories of triumph over adversity and heartbreak. I highly recommend them to anyone who has faced difficult challenges ... And who hasn't? These kinds of books put life in perspective and I don't know how anyone could not come away with greater insight, perspective and -- above all -- gratitude after reading them.

I finished Jesus, My Father, the CIA on the drive home yesterday. And I was so moved by several passages that I had to read them out loud to John. Ian Cron (the author) grew up with an alcoholic father with Narcissistic Personality Disorder (full blown). Ian began life loving Jesus. And over the course of his life, he felt abandoned by Jesus as well as his father. The book takes you through his whole life and his own alcoholism.

At a pivotal point in his life, he had an experience that he didn't completely understand and wrestled with for some time. He had a curious vision (completely sober) and heard a voice asking his forgiveness. He didn't know what to make of the voice or who was telling him they were sorry. He wondered if it was Jesus speaking to him, but could not imagine why Jesus would apologize to him. That seemed unrealistic. After all, Jesus is perfect and sinless. Why would He ask forgiveness. He wondered if it was somehow himself asking himself for forgiveness. Or maybe it was that he needed to forgive his father. But he kept wondering if it could possibly have been the voice of Jesus. He asked different people for their insight and got a variety of opinions. But it was this conversation that turned the lights on for him ... and moved me to tears as I read it.

Miss Annie was an elderly black woman we'd met at a church we attended in Denver, where I was in seminary ... Miss Annie and I were standing at a grill, flipping burgers and cooking chicken at an all-church barbecue, when I told her about that night at St. Paul's.

"Miss Annie, is it wrong for me to believe it was Jesus who asked my forgiveness?" I asked her.

She frowned and shook her head, "Lord, what do they teach you at that school?" she said. Then she faced me head-on. "Did God humble himself by becoming a man?" she asked, every word spoken more loudly than the one before.

"Yes, ma'am," I said. I'd never used the word ma'am before, but it seemed an excellent time to start.

"Did he humble himself by dying on the cross to show us how much he loved us?" she asked, waving her spatula at me.

My eyes widened and I nodded, yes.

Miss Annie's body relaxed, and she put her hand on her hip. "So why wouldn't Jesus humble himself and tell a boy he was sorry for letting him down if he knew it would heal his heart?" she asked.

Miss Annie ambled the five or six feet that separated us and took my hand. "Son," she said, rubbing my knuckles with her thumb, "love always stoops."

Let me tell you why reading this impacted me so profoundly. I have never felt like I needed to forgive Jesus for letting me down. It isn't that I related to the abandonment this author felt. For some reason, since my mid-twenties at least, I have believed that if God allowed me to go through something hard, there was a bigger picture and a purpose in it that I would understand later. Even if I understood it much, much later. Or even if I never understood it in this life. I have to say that I do remember feeling like God was unfair sometimes prior to my mid-twenties and that I could never please Him no matter what I did. But I grew out of that early in my life and began to look at life's challenges differently. I can't explain how or why that happened. I just attribute it to God's grace. He knew I needed that grace and that outlook to rise above my own challenges, perhaps. But there is a completely different reason I was so moved by this passage in the book.

Not too long ago, I had a difficult conversation with someone close to me. In that conversation, some statements were made that hurt me deeply. I did not want to be defensive or hurt the person who was hurting me. So I was extremely careful with my words. I was so careful that after I hung up, I got mad. I shared my hurt, frustration and my anger with my husband, my pastor, and one close friend. They each seemed to understand why I felt disrespected and hurt. In all honesty, this conversation left me feeling emotionally manipulated and very much like I used to feel in my abusive marriage. In order to deal with my emotions, I wrote an outline of points I would later address with this person in a subsequent conversation. But I made no effort to pursue a conversation. And I prayed that God would just take care of it because it wasn't a conversation I really wanted to have. But I did want a healthy relationship. And above all else, I wanted to show unconditional love rather than make my feelings the priority.

Sometimes it's hard for a person like me to know when I'm loving unconditionally and when I'm being codependent. But this wasn't one of those times. I wasn't feeling the need to have this person's approval or soothing words. I just wanted to handle it right in the interest of the other person.

I have gone back and forth since that conversation, wondering if I handled it well -- or if I fumbled the ball. Was there a healthier way to respond than the way I responded? Were there things I should have said and didn't? But when I read that passage, I knew the answer was: No. Humility was the right response.

I realize I have grown as a person in that I didn't have to make all my feelings known. It was enough to say I didn't agree with all the conclusions. Beyond that, I just needed to listen and ask forgiveness ... and take my wounds out of it for the sake of the other person. And when I read those words, "love always stoops," I had the confirmation I have been looking for.

I read the passage to John and had to blink away the tears so I could reread the words. I choked up and my voice cracked as I read it to him. I told him, "There is my answer. I was supposed to read this."

You never know what answers you will find in a book. I find puzzle pieces to my own life in nearly every book I read.

Saturday, September 15, 2012

A little late with this update . . .

It just dawned on me that I failed to post an update following John and Marian's most recent checkups with Dr. Flinn. Although I will never take for granted this stretch of uneventful exams and normal bloodwork, I have gotten used to getting good news every eight weeks. And I never have anxiety prior to our doctor visits these days. Based on the way they both feel and the absence of swollen lymph nodes, I assume all is well and their bloodwork will only confirm the obvious.

John has been receiving CAL-101 for 27 months. Marian's clinical trial began a little more than four months after John's. And they are both doing great! Blood and lymph nodes remain normal for each of them. And they are both feeling good. Although John still has minor fatigue at times and often falls asleep while trying to watch television at night, I have noticed that his energy level has improved since our move to West Virginia. I think being a Honda dealer again really agrees with him! We have made many wonderful new friends and we are both loving life in the mountains. I am not even dreading the snow as much as I thought I would be. (I'm sure I'll be tired of it by February, but it's a small price to pay for the beauty of four distinctly beautiful seasons and the mild summers.)

I often stop what I'm doing at random moments and just thank God for the life He has blessed us with. In February of 2010, John failed chemotherapy for his CLL. Had it not been for the phase one trial of CAL-101, we would have been facing a stem cell transplant. Only patients who had failed treatment or relapsed were eligible for that first clinical trial. So our disappointing results from FCR qualified him for the first round of study and he was able to start at the lowest dose given. Had he not been in that first trial, he probably wouldn't have had the opportunity to try 50 mg. because he is now the only patient receiving that low dose. He is the only patient who did not have to increase the dosage. And now the drug company does not even make a 50 mg. capsule. The lowest dose currently is 100 mg. So John takes a 100 mg. capsule once a day instead of 50 mg. twice per day. Since that dose worked so beautifully for him, I'm thankful he is not taking more than he needs to control his CLL. He has had no short term side effects or toxicity from CAL-101, but if any longterm issues develop, he will probably be at a lower risk because of his dosage. Marian started at 150 mg. twice a day and was able to decrease her dosage to 100 mg. twice per day. You may recall that she developed the side effect of lung inflammation and suffered a serious case of pneumonia in January 2011. But part of that ordeal was a result of her primary care physician diagnosing her with bronchitis instead of pneumonia. Therefore, she went untreated for pneumonia prior to Dr. Flinn admitting her in Nashville.

So many things could be different today. Marian could have died in January of 2011 had we not gotten her to Dr. Flinn in Nashville to be properly diagnosed and treated. She spent three weeks in the hospital and three nights in ICU. John would probably have undergone SCT by now and I'm thankful we don't know what his outcome or complications might have been. Instead, both John and his mom are enjoying smooth sailing and good quality of life on CAL-101. Instead of sitting for hours with an IV in their arm, they only have to take a pill and see Dr. Flinn every eight weeks to confirm their continued remissions. Marian says she feels so good it's scary (I have to remind her not to buy into superstitious thoughts). LOL. And John has been up to the challenge (physically and mentally) of a major move and taking over a new dealership. These are blessings I am so very thankful for. I never lose sight of the treasure each day is. Although I have my ups and downs, like everybody does, I am so aware of my blessings and humbled by God's goodness.

Although John still works hard (and probably always will), he has taken more time to smell the roses since he failed chemo a little over two years ago and regained his health with CAL-101. Since moving to West Virginia, we have spent more time doing fun things and enjoying the company of friends. Cancer is not something anyone hopes for, but there are always silver linings and lessons learned by going through life's storms. I've heard other patients talk about the perspective they gained through facing cancer and their mortality. I can see many ways that God has worked through our CLL journey to transform us and use us in the lives of others. And I live each day under the banner of Romans 8:28. I have seen the evidence of this promise (that God is working all things for our good) manifested in my life so many times. And I believe I will see further evidence in the future of what is unseen today.

I am enjoying a wonderful life. I've been saying this ever since I first met John, but I truly believe I am living the best years of my life right now. I know I am going to look back on these years with such fondness as I grow older. And I'm so thankful. If my life ended today, I have already been blessed so much more than I could ever deserve or dream of.

Saturday, September 8, 2012

Sunrise in the Mountains of West Virginia

I got up with John (and the birds) this morning and told him goodbye at the door. As he walked outside the garage, he said, "Wow. The sky is beautiful. You should walk out and take a look." So I walked outside and looked to the left of our condo at the eastern sky. Not only was a breathtaking sunrise about to take place, but the planet Venus was shining brightly in the early morning dawn. Once I was out there, I didn't want to go back inside (except to grab my phone for some pictures).

I wish I could have captured the gentle breeze and the subtle sway of the treetops. It didn't just look amazing, it felt amazing to be in this setting. And my thoughts went immediately to God, the Creator of this majestic beauty. I will never comprehend how a rational, logical thinking person can look at the wonders of nature and question the existence of God.

These are the kinds of moments when you just have to stand in awe and give thanks to God for His creation ... and being alive to marvel at it!

It was even better in person, but I hope you enjoy the pictures.

Venus in the morning light (above)
"When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love."- Marcus Aurelius 

Friday, September 7, 2012


I am reading a book right now by Joni Eareckson Tada. The book is A Place of Healing: Wrestling With the Mysteries of Suffering, Pain, and God's Sovereignty.
A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty

Facing daily challenges is all about keeping the proper perspective. Joni had a diving accident in 1967 and has lived ever since as a quadraplegic. So she knows a lot about wrestling with the mysteries of suffering, pain, and God's sovereignty. I've been through some difficult places in my life and I know a little bit about that struggle. But she has lived it out far more than I have. I love reading a book that makes me wish I could spend time, face to face, with the author. And this is one of those books. I'm just a few chapters in, and I can't begin to describe how much I admire Joni.

As I'm reading about her injury forty-five years ago, I cannot help but reflect on an accident I had around that same time. I was between the ages of eight and ten. I remember where we lived and that my youngest brother had not been born yet. So I know I was under the age of eleven. We had an above ground pool in the back yard of our home. And the pool was set up on a slab of concrete (something I would not recommend). It was only four and a half or five feet deep. And being a kid (oblivious to the danger and stupidity of what I was doing), I dove into the pool head first and pulled my arms back in an underwater swim motion. The top of my head took the full impact of meeting solid concrete. And I will never forget the sensation. I felt as though my whole back had compressed like an accordian. I could not move. And I was underwater. It was frightening.

My younger brother was in the pool with me. He thought I was joking when I didn't come to the surface right away. How I got to the surface is still a blurred memory. I think my brother helped me and called for our mom. She helped me out of the pool and I remember lying on her bed with a headache afterward. I don't remember going to the doctor. They might have taken me, but I don't think they did. I think because I was able to walk and seemed okay, they just watched me. I can't imagine that I did not at least have a concussion. But I was okay and I had no permanent injury; just a lasting memory of what could have happened to the rest of my life that day.

Had I been paralyzed by that diving accident, everything about the last forty-plus years of my life would be much different. My son wouldn't be here. My grandsons wouldn't be here. I'm pretty sure I wouldn't be here in West Virginia with John. And every time I remember that day when my life could have taken a tragic turn, I am overwhelmed with thankfulness that God spared me from knowing those challenges. But at the same time, I can't fathom why I was spared and Joni (or anyone else) was not.

God gives us all different circumstances, challenges, joys and sorrows. Comparing what we go through to what someone else goes through is like comparing apples and oranges. It isn't tremendously helpful or productive in many respects. But I do know that if you focus on someone you believe has had it easier than you have, you will feel sorry for yourself. (You can't possibly know the private pain they may have endured that only God knows.) However, if you focus on all the people in this world who have endured hardships far greater than your own, you will feel blessed and thankful . . . and undeserving. At least, that is the way I feel when I reflect on my life.

It's so easy to let little things frustrate or irritate us, causing us to lose sight of how truly blessed we are. I often think of how Adam and Even had dominion over everything and could eat of every tree in their beautiful garden paradise. God only instructed them to refrain from one thing; the fruit of one tree. And whether this was literal or allegorical, the take-away is the same. They focused on the one thing He withheld instead of all the good and beautiful things He had provided. And look what became of them. Look at what that produced.

I'm preaching this little sermon to myself because I got in a cranky mood yesterday afternoon. I'm hitting midlife head on. Unless I live to be 106, I'm technically past the midway point. With my age comes hormonal fluctuations, hot flashes and the occasional mood swings. They haven't been as bad as I feared they might be. But yesterday I was venting a little frustration and then I stopped and looked at myself. I can say anything to John. He will be honest with me, but he's honest in a kind and humorous way. I said, "You know, maybe I'm the problem. I just feel more on edge and a little more sensitive than usual." He smiled and said, "I think you might be onto something. You do seem a little more bold and assertive with your opinions lately." And then the minute he said it, I saw a look of concern on his face as he said, "Now, please don't start obsessing and beating yourself up over that. It's okay to have opinions."

He knows me. He knows me so well.

I hate being flawed. I wish I could respond in the most appropriate way at all times and in every given situation. But I don't. (Especially on the five days I'm not using my progesterone cream. LOL.)

Since I can't be perfect, I will settle for being real and honest -- confessing my faults to everyone who will listen. Actually, real and honest beats perfection any day. After all, who could relate or connect with me if I were perfect?

I know I'm a bit odd to the average person. A lot of people would want to conceal the areas they feel the weakest and project strength. But not me. I actually feel better when I confront my weaknesses and share them openly. After all, you all see me as I am. I might as well admit that I see me, too! (Nothing worse than being the emporer with no clothes!)

I kind of wish I wasn't quite as expressive and opinionated as I am. But I'm trying to make the best of the personality God gave me. Some days I do better than others. But every day -- even on my crankiest day -- I never lose sight of God's goodness to me and the beautiful life He has given me. Just taking a few minutes to dwell on my many blessings refocuses my perspective on the little frustrations I am occasionally distracted by.

Monday, September 3, 2012

Six Months Post-Op: Bi-lateral Morton's Neuroma

For all of my Morton's Neuroma readers, I just wanted to share a recovery update on my very successful neuroma surgery. Thursday, September 6, will mark six months since both of my feet went under the knife to remove Morton's Neuromas. And I'm doing great!

My only issues now are some minor soreness and slight swelling when I'm on my feet more than usual. But the nerve pain I suffered with for years is completely gone. And I sure don't miss the cracking sensation and nerve pains that once radiated into my third and fourth toes on a regular basis!

I don't feel like I have a pebble in my foot as I've heard some describe after this surgery. But occasionally, when I've been on my feet a lot, I still feel something more like a pea in that spot where the nerve was probably severed. It's not painful. And most of the time I don't feel it at all. But now and then (usually when I'm barefoot and my feet are tired), I feel that sensation. I'm pretty sure it's normal. And it will probably go away eventually. But even if it never does, it's a whole lot better than the pain I had from the neuroma.

My desire to wear high heels is practically zero these days. I've gotten used to wearing comfortable cute shoes. And because of the damage I inflicted on my feet wearing high platform heels too much in my younger years, I cringe when I see those shoes now. But I do still own a few pair of heels (for special occasions) and this morning I tried a pair on and walked around in them. The last time I tried them, it was obvious my feet were still swollen because they were too tight. This morning they felt a lot more comfortable, maybe just a tiny bit snugger than before the surgery. I am excited that I will be able to wear my stylish boots this winter with a medium size heel. Last winter I couldn't wear them because of the neuroma pain. I had to wear completely flat boots with orthotics.

I had to gravitate toward riding my recumbent bike because the neuroma pain made walking on the treadmill or using an elliptical too painful. But I can now walk for an hour on the treadmill without pain. I've done Zumba without pain. And when we were recently in Philadelphia, we walked for miles and I never had pain in my feet. I am at the point in my recovery now that I am not thinking about my feet during normal activities.

The scars are my reminders of the surgery. And the scars are fading nicely.