Sunday, January 31, 2010

Defensiveness

Those of you who actually know me know that I tend to over-analyze everything, including myself. So it should not come as any great surprise that I have been further reflecting this morning on my reaction to the comment left on my guestbook suggesting I had always craved attention and that was why I wrote the book.

Last night, I reacted by resorting to "defending" myself on my blog. (That post has been deleted.) This morning, however, I began to think about something my former Christian counselor once said to me. He pointed out to me that any time we feel defensive, it's because we are protecting something. The person stung us with at least a grain of truth, or we would not feel our defenses come up.

Last year, this was said to me in an email:
"You were always the one who had the stage. Piano lesions, the one who excelled in everything, always center stage. But it was never enough."

When I read it, my first thoughts were: "What makes you think I wanted that? What gave you the impression it was never enough? I actually resented that I had to constantly perform and you couldn't even see that!" (I find it offensive when people who do not know me or what's in my heart think they do.)

So when I read, "...but you always did crave the attention," I thought of the piano lessons and the stage remarks, and I wondered if this person perceived me the same way based on all those years of performing. It probably wouldn't have even occurred to me if this had not been said to me so recently. The truth is, I resented having to always perform, but that was the way I received the approval I did crave. And one of the things I wrote about in my book was that God has helped me to see that seeking other people's approval, acceptance and love IS seeking attention. So of course I felt defensive when I read it. Yes, I did want positive attention. Maybe not in exactly the way that person is thinking of it, but approval IS a form of attention.

I was the first child and the only girl in my family. More was demanded of me than either of my brothers. The fact that this is true of firstborns in almost all families is well documented in many psychology books. It's just the way it is. Parents expect more from the first child and firstborns are often the over-achievers. Then, with each successive child, the parents learn from their mistakes and tend to relax a bit. This is not an indictment of my family. It's true of most families.

So, although I may not remember ever wanting the "stage" for the sake of having the stage, I did want love and approval and that certainly is a form of craving attention. How silly of me to deny this...even to myself. Especially since I have addressed it and confessed it already in my book.
__________
The following is an excerpt from Breaking the Chains (pages 111-112):

You cannot follow Christ and protect your old nature. Following Christ is about dying to self and putting to death your old nature. It was painful for me to confront how much my people-pleasing was driven by selfish motives. We often think of people-pleasers as being focused on others; but the truth is, people-pleasers have an unquenchable thirst for being loved and affirmed. Rather than being noble and good, my actions were selfish. Once I saw my true motives and the selfish heart that was driving me, I knew I had to change. It’s one thing to be sick and not know you’re sick. I could endure a lot of unhealthy behavior in other people as long as I viewed myself as being healthy. However, once my eyes were opened to my condition and I saw myself, I wanted to change and become healthy. Above all else, I wanted to become spiritually healthy.

There was nothing more painful for me than confronting my self-centered heart or self-serving motives. I was so good at deceiving myself. I did not even realize I was self-centered, that my motives were all about keeping myself comfortable and safe. So, on many occasions since, I have asked God to reveal the hidden motives of my heart and make me more aware of them—in small doses, of course. (If He showed me everything He sees, it might be more than I could handle all at once.) In the words of Philip Yancey, “God already knows who we are: we are the ones who must find a
way to come to terms with our true selves.”
__________

I long to have genuine humility before God and others. I long for the day when I cease to defend or justify myself when criticized and choose repentance instead.

Lord, I repent for my need to be approved of and understood by others. I ask your forgiveness for seeking the validation of other people. I confess my longing for others to know me and know my heart. Help me to find my acceptance in Christ alone. And please continue to show me the hidden motives of my heart that I don't always see in myself. In Jesus' name, Amen.

Thursday, January 28, 2010

We're done!

Today was John's last day of treatment. He's had six rounds of chemo (three consecutive days every fourth week) since September 8. And we are hoping today's infusion will be the last for a long time . . . as in YEARS. Of course, we don't know what the future holds.

The lymph nodes, which are still palpable under the skin, could continue to shrink for months or they could start to come back any time. The scans at halfway point showed the nodes were 50% smaller after three rounds. He'll undergo additional ct scans on February 22 and find out the results on the 23rd. We see Dr. Flinn for an office visit and bloodwork prior to that, on the 9th. But in John's case, the bloodwork primarily tells us how well he has tolerated the treatment because his CLL progression has been in his lymph nodes rather than in his blood. The scans will tell us how well his lymph nodes have responded to therapy. His nodes were the only reason for treatment.

We don't know what's going to happen next. We never will. But tonight I'm just so happy that -- for a while anyway -- chemo is over. As we got into the elevator, I told John, "It feels like we should be celebrating." He looked at me weakly and stated the obvious: "I feel too lousy to do any celebrating. I just hope I don't have to do this again for a long, long time." He said that with Rounds Five and Six, he began feeling waves of nausea on the way to treatment each day just thinking about getting that stuff pumped into his veins. He compared it to the sick feeling you have remembering the last thing you ate before getting the flu.

Once again, we are enjoying our nightly Wheel of Fortune. It's so weird. I have never really watched Wheel of Fortune except with my mom when she had cancer and recently with John. It's amazing how many years this show has been on television. My mom received her diagnosis in 1986 and died in 1987. I can't watch the Wheel without thinking about that difficult period of time.

Several months ago I met a woman who had lost her husband to pancreatic cancer. She and her present husband were delivering my new refrigerator. She noticed and commented on the Tennessee Oncology business card on the counter, telling me about her late husband. I told her about John's battle with leukemia. I think we had just begun treatment. She wasn't aware of how much I had already studied CLL and the treatment John would be getting. And in a very compassionate way, she told me a lot of things I already knew and then proceeded to "prepare" me for what it would be like to live with someone undergoing chemotherapy. She explained how common it is for the patient to be depressed and agitated and even hostile, taking everything out on the closest person to him (the wife). I told her my husband wasn't like that and had never once taken anything out on me; not even a bad day. I said, "I'm telling you the truth. My husband has never been unkind to me one single time in our whole marriage." Obviously thinking I was naive and unrealistic, she responded, "Your husband has never gone through chemo, either. Just be prepared because it's very hard. At some point, you will feel isolated and alone. So please feel free to call me if you need someone to talk to." I smiled and thanked her. It was a very generous and compassionate offer considering she didn't even know me.

I remember thinking, however, that she had no idea the kind of man I am married to. Nor could she possibly fathom the number of close friends I have in my life who would drop everything to offer me their shoulder, or anything else I might need, any time of the day or night. I knew I wouldn't need to make that call.

For the last five months, John has endured feeling chronically lousy, being stuck with needles, bags of poison pumped into his veins, fatigue, sleepless nights and, until we found the right combination of meds, several episodes of debilitating nausea. I know this experience and all the drugs have diminished his enjoyment of life and affected him emotionally. The last couple of years -- and now treatment -- have taken a toll on him physically, mentally and emotionally. That's obvious. But, through it all, he has continued to be the sweetest, kindest, most considerate husband to me -- just as I knew he would be.

I am so glad treatment is over for now. Unless God blesses him with a complete healing, John will battle CLL for the rest of his life and we know there will be more treatment in his future. I just hope and pray that my amazing, wonderful, unselfish husband gets to feel good again and enjoy some real quality of life for a significant length of time before we have to do battle with this beast again. In my eyes, there is nobody any more deserving of that than my John.

Wednesday, January 27, 2010

Day Two and Anonymous Flowers

John received flowers this morning from someone, wishing him success with his treatment and many years of happiness with his wife. Since the note referred to me as John's wife instead of by my name, we could only guess that the sender is a friend of his from years past, but there was no name on the card. We both wish we knew who sent them so we could say thank you. John even called the florist to inquire about the sender, but he was told that the flowers were ordered through a tele-florist online and the purchaser had not included their name. So we don't know if this was intentional or an oversight. But it was certainly a kind thing to do and we both appreciated the good wishes. Whoever you are, if you happen to be reading, thank you so much!

John was able to go to the dealership for several hours this morning, and he got his full infusion of fludarabine and cyclophosphamide in one hour this afternoon. I got to catch up with a friend I haven't seen in years downstairs in the atrium as John received his treatment (a high point in my day.)

After treatment, we went to Pawbowsky's for an early dinner on the way home. John ate a burger, part of a chili dog, fries and a few bites of my grilled turkey and cheese on sourdough. I'm thrilled he has an appetite and isn't sick at the thought of food anymore. Even though he doesn't feel good, he has been able to eat so much better since using Emend plus the Sancuso patch for his nausea. From listening to other patients, I know that calories are really important during chemo and having food in your stomach can help you feel better -- probably because it gives your body strength and keeps your blood sugar stable. So I'm always happy when he can eat. And I'm especially happy when something sounds good to him.

John gets so wiped out by the drugs that he fights to stay awake almost from the moment he sits down in the family room. But if he allowed himself to go to sleep, he wouldn't sleep at all during the night. So he tries to stay awake as long as he can. We are watching Wheel of Fortune, which has become a nightly ritual these days. LOL.

It's almost hard to believe that tomorrow, January 28, is John's last day of chemo for a while...hopefully a long while. I've looked forward to this day since September. So rather than allowing myself to worry about the depth or length of John's remission (which I have no control over), tonight I am determined to focus on having this difficult "season" behind us and hopefully getting back to a more normal existence soon.

A CLL friend (John Wagner) reminded me on Facebook this morning that he has stayed in partial remission for three and a half years (longer than some complete remissions). Reading that helped me to regain the proper perspective. I have felt much lighter today than I did last night. Thanks for praying.

Tuesday, January 26, 2010

I'm tired

Today was the long day of treatment. The first day of each round is the hardest because we have to arrive at 7:30 and we don't normally get out of there until about 5:00. Which means we also have bumper to bumper traffic coming home.

The first four rounds John felt okay (other than being very tired) through each treatment day and did not start to feel really bad until the day following his last infusion. However, he started feeling bad on the very first day of Round Five and he felt very bad all day today. I could see it on his face and asked if he was okay. He admitted that he felt very bad and I told him I didn't really have to ask. His expression always tells me what I need to know. On the up side, in spite of how bad he feels, he was hungry and able to eat a sandwich from Jersey Mike's after we got home. I'm thankful he is not suffering that debilitating nausea.

Dr. Flinn said that he was pleased with how well John had tolerated treatment. Many patients have to stop after four rounds because they just can't take more chemo. Their counts drop very low and don't recover. So treatment has to end. He said that the way John's counts have bounced back indicates that his bone marrow is strong. And I'm thankful for that.

While Dr. Flinn was examining John and feeling the still-present nodes, I spontaneously addressed the outcome of treatment. "With John's nodes still being the size they are after five rounds," I asked, "there's really not much chance of a complete remission, is there?" And he said, "No." He was very upbeat and didn't show any personal disappointment. He just matter-of-factly stated, "But if we can just keep the nodes this size for a significant length of time, I will feel like we got a good outcome from treatment." He also said that it probably won't be necessary to do another bone marrow biopsy because the nodes will already demonstrate the absence of a complete remission.

I'm surprised that I feel so let down tonight. We went into this knowing it was more likely that John would get a partial remission than a complete remission. And I know that he could stay in a partial remission for a long time. But I have prayed and many others have prayed that God would give us better than expected results; a complete remission and a complete response in his lymph nodes. And at this point in time, it does not seem like that is God's plan. If in the next thirty days John's nodes all shrink to less than 1 cm, it will be an obvious miracle. And I will shout it from the rooftops to God's glory if that happens. But so far He has not answered our prayer for complete healing.

I want to be very clear on this: there is not one shred of doubt in my heart or mind that God CAN heal John's body completely at any time if He chooses to do so. And I have gone through this treatment with a hopeful and positive outlook. But I've been down the cancer road up close and personal before (with my mom). And I've seen lots of people lose their battles in spite of all the many prayers that were being said for them. And I know God doesn't always heal us physically. In fact, a Christian CLL online friend that has been very inspiring to me over the past two and a half years lost his CLL battle last week. Despite our prayers, he developed a secondary cancer and began a steady decline. So while I believe deeply in God's power and ability to heal miraculously and completely, I also know He doesn't heal everyone's physical body. And trying to convince myself that a certain outcome IS God's will just makes me feel like I'm setting myself up for a fall.

I feel especially this way today. I have quietly dared to believe that, because of all the prayers, John's nodes might be normal again by the end of treatment. And even if every single one wasn't reduced to less than 1 cm, that they would be much smaller than they still are. So I'm disappointed because this is not the outcome I hoped for. But my faith in God's ability to heal has not been diminished. I know that God has a plan and His plan is not always what I would choose. In spite of my disappointed heart, I still trust God and know that His plan is best and there is a purpose. But it's still hard. And sometimes watching John go through this feels like more than I can stand.

However, to me faith means trusting God and accepting His will no matter what His will is (especially when His will does not line up with my personal desires). Faith is surrendering my will to His and saying from my heart, "Your will be done; not mine. My life is in Your hands to do with what You will, when You will, how You will..."

It's strange how emotions hit you randomly. I got through the day fine. I was fine when we left Sarah Cannon. But as I drove us home in the dark and John's eyes were closed, my eyes filled with tears and I felt momentary despair. Although he never complains, I'd seen the expression of misery on his face all day and I felt overwhelmed. Silently I told God from my heart that I couldn't hardly stand to see John go through this and I even asked the question "Why? He's such a good, kind man. He's already been through so much in his life. Why does he have to go through this too?" But then I reminded myself, "You have to surrender your will and your questions."

I don't know about other people, but I have more peace when I don't try to be in control of my circumstances or claim that I know God's will. I have more peace when I willingly surrender my plans to His. God knew John was going to develop CLL. It wasn't a surprise to Him. He knew it when He brought us together just prior to John losing Brittany. He knew John was the man I needed and that John would also need me. It is through God's mercy that I have John at all. As we merged onto 440 this evening, I told John, "I'm so sorry you have to go through this, but I'm so glad I'm with you." He said, "Not nearly as glad as I am." And I assured him he was incorrect about that.

I am so thankful that God allowed me to be in John's life and walk this path with him. I consciously focus on that when I'm feeling down (as I have been tonight). In spite of the rollercoaster of emotion and the times I just want to cry because I feel sad or afraid, I truly am so very thankful.

Monday, January 25, 2010

Treatment Week #6

It's hard to believe we have come to the final week of chemo and February is just a week away. When John began this clinical trial on September 8, 2009, February seemed so far off in the distance. And after that first awful weekend when he could not get out of bed for days following Week #1, I remember feeling pretty overwhelmed with fear, anxiety, and just plain sadness that my sweet husband had to endure all of this. The swelling of lymph nodes, the needles into his veins and his bone marrow, the nausea, the fatigue. Watching someone you love go through all of this is hard. I know it's harder on him, but it hasn't been an easy road for me as his wife because I love him so much and I would just give anything to be able to spare him this experience.

However, God is in charge (not me) and God has not chosen to spare John or me the CLL experience. So we accept what we cannot change and try to focus on our blessings (which are many) and walk the path God has laid out for us with the courage only God can provide through His love and grace.

The most challenging days for me, so far, include those early months following diagnosis, making the decision to proceed with this course of treatment and then watching John endure the treatment. When you are dealing with an incurable diagnosis, treatment decisions are very taxing and stressful. You try to determine how to best "manage" things to get the best quality of life and the longest survival. You can't know if you're making the right decision because you don't know the outcome or the individual side effects that will result. (When you have the hope of a cure, you just go big guns all the way and there is no difficult decision to make because the risks are worth taking for the potential result of "beating" the cancer.) But it's a different ball game when that isn't the goal of treatment.

I think the decision to proceed to chemotherapy was perhaps more difficult for me than it even was for John. And that's because I'm the one who has done so much reading and knew all the reasons so many patients put it off as long as possible. You hope and pray for a long watch and wait. You hope to avoid chemotherapy as long as possible. Treating CLL is an art as much as a science because disease progression and response to treatment can vary so greatly from one patient to another. The more I've read and studied the disease and various treatment options, the more I've learned that reality. Everything CLL is so individual and there is definitely not a one-size-fits-all solution.

I would read about patients who managed to avoid chemo and stay in "watch and wait" mode for ten years or more. I wanted that so badly for John. We did manage to postpone it for two years post diagnosis, but John's nodes became more and more of a problem for him. They were most noticable to others in his neck, but they were getting huge in other places too (abdomen, groin, under his arms). When CLL proliferates in the blood, the white count and lymphocytes can be very high and yet treatment is not indicated as long as the patient remains asymptomatic. But when it accumulates in the lymph nodes rather than the blood, all kinds of new issues come into play. In addition to the discomfort of nodes that get so large they become painful, they can affect organs and arteries if allowed to grow out of control in the abdomen.

In John's case, his bloodwork has never been the problem. The only time his white count would show any significant increase was when he was taking steroids. And his blood has held up very well through treatment. His white count and neutrophils have dropped into the dangerously low zone after the last two rounds, but they have come right back to low-normal within two weeks both times and hopefully they will after this last round as well. But his lymph nodes, although much smaller, are still there. You can't see them sticking out anymore, but you can feel them. They are stubborn and more challenging to control than the blood. I knew that going into treatment.

In order to be considered in complete remission, all the nodes have to be reduced to less than 1 cm in size (normal). No matter what the blood and marrow results are, if any of the nodes remain larger than 1 cm, he will only be considered in a partial remission. And although his disease may not progress for a long time, Dr. Flinn explained that partial remissions typically do not last as long as complete remissions. And because of the stubborn presence of those nodes after five rounds of treatment, though I'm trying not to, I must admit that I feel a bit disappointed. It doesn't look like a complete remission is on the horizon to my human eye. But I remind myself constantly that God is in control and nothing is too big or challenging for Him. We are in His hands.

I know of patients whose lymph nodes began to return within a year of treatment. I try not to think about that possibility. Dr. Flinn has also told us about one of his patients whose nodes just continued shrinking for a whole year following treatment. So I know that anything can happen. And to project myself into imagined future scenarios is just not helpful. The future is unknown for us all.

In spite of my ever-present concerns, I am excited that this will be the last week of infusions for this course of treatment, and hopefully whatever remission John gets will hold for a long time. I'm so looking forward to him feeling better as he gets further away from the toxic effects of the chemo.

In sharing the details, I realize that I could sound a little more down than up; because there is a heaviness to this subject of incurable cancer that I feel even as I type the words. But I'm not down and I'm not heavy-hearted. I'm just not in denial. I want to write about these details because I know it helps others to more fully understand the physical/emotional battle of both the CLL patient and the CLL caregiver. And those who read my blog who are in the same battle (in either role) can relate to everything I write. Sometimes all you need to know is that someone else knows exactly what it feels like to be in your shoes.

As I mentioned in a previous post, one of my goals for the new year was to live more fully in the preesent moment. Through the publishing of my book and all the rewarding feedback I have received, God has given me greater closure on the past than I have ever had. I can't fully explain it, but for me it has been nothing short of miraculous. I have also experienced a new sense of freedom and liberation from "baggage" that I have carried for years. And I am enjoying that freedom tremendously. I know that only God could do that for me. He knew exactly how to accomplish it. And it was a long process. This CLL journey that John and I are on will no doubt be a long process of accomplishing many of God's purposes in our lives as well. My goal is to stay focused on Him, trust Him more fully than I ever have, and live each day to the fullest; touching as many other lives as God permits and pointing others to Him. God has blessed my life beyond my biggest dreams. And even my worst fears are diminished when I reflect on all that God has already done in my life. I'm thankful that John has tolerated treatment well and he is improving. I believe we have many wonderful years ahead of us. And even though there are a lot of conflicting emotions to deal with on this journey, God always gives me exactly what I need in the moment to overcome.

I know a lot of you read my blog to keep up with how we are doing and what is happening. And every now and then, I want to address our current circumstances to keep you informed. So I'm going to do that even if it means, in the moment, I trigger a bit of my own emotion. As I have written this morning, I've certainly felt the emotion of dealing with illness and uncertainty. But there is never a moment I don't feel God's presence and His love for us.

I will definitely let you know (on my blog) how John holds up this week.

Tuesday, January 19, 2010

Thankful

I have been too busy living my life to spend as much time on the computer lately. I think this is a good thing.

I met a friend for a long lunch Saturday, then went to church and dinner with John Saturday evening. We spent a relaxing day at home Sunday and watched lots of football together. I spent time with a friend Monday and then volunteered at the church Monday evening. I spent the whole day with my sister-in-law, Cheryl, today. I am spending tomorrow with Rebecca and the boys.* I volunteer in the church office Thursday. Hope to meet a friend for coffee Thursday afternoon when I leave the church. I have plans to get together with a friend I haven't seen in a while for lunch on Friday. And I hope to catch up with my cousin Saturday at her daughter's birthday party! My days have been so full lately that I just haven't had time to write anything meaningful on my blog.

I am blessed to have so many people in my life that I feel close to and want to spend time with. It's like a juggling act at times trying to get together with all my friends (plus family) and running out of days in the week. Believe me, I KNOW what a blessing this is. I've heard it said that if you truly have two or three real friends in your life, you are very fortunate. And I can honestly say that I have few acquaintances and more dear friends than I can count. I have been especially focused recently on the blessing of friendship and how much the people in my life mean to me. God has been so good to me.

John has his last round of chemo next week (Tuesday, Wednesday and Thursday). I am excited about getting this behind us. Ever since he started treatment in early September, I have been looking forward to February. But I must admit that as the last round approaches, I find myself having a little bit of anticipatory anxiety about the upcoming tests that will tell us how well he responded to this treatment. His neck looks so much better. The nodes have greatly reduced. But they are not completely gone. And unless they all go back to less than 1 cm in size, he will not meet the criteria for a "complete remission."

We have already been told that when nodes have gotten as large as his were, they hardly ever get that small again. So he is more likely to achieve only a partial remission. And patients who have a complete remission have the longest remissions. I know that he can still stay in a partial remission for a good while and I have been determined not to focus on the "designation" of complete or partial; just be thankful for any remission of his CLL. But as the final treatment approaches, I would be lying if I said I wasn't a little anxious about this.

I have prayed and hoped that he would exceed expectations and be in complete remission at the end of treatment. I want that so badly. But I also wanted so much for him not to have to have treatment this soon and God did not see fit to grant that. So I ask God for a complete remission and remind Him that He said we have not because we ask not. But in the next breath, I tell Him that I will accept any outcome He allows and know that He is working all things for our good, and His grace will see us through. And then I try again not to focus on anything other than trusting God with all my heart and accepting His will for our lives.

John won't have additional scans and another bone marrow biopsy for probably a month or so after his last treatment. But when we know anything conclusive, I will definitely share it on my blog. Please pray for John to get a complete remission. I know that prayer can move mountains. And prayer can shrink those nodes past what any chemo is capable of. With God's help, I know those nodes can be reduced to under 1 cm. Nothing would make me happier than to hear "complete remission." But I want my peace to come from knowing that God is in control no matter what I hear.

I am so thankful for all that God has already done in our lives. I couldn't have imagined the life He's blessed us with because my imagination wasn't big enough! God has proven to me so many times that He is providing for me before I even know what my needs will be. So I don't want to get caught up in terminology and limit God's power over any situation. I have hope for the future because my hope is in God and not because I get a specific prayer answered. There may be weak moments when I need to be reminded of this. But I have many friends whom I know will step up to that plate.

It is such a comfort to know that no matter what the future holds, I will be held tight by Jesus and by the many people who love me. I know I will never be alone. To all my family and friends who are reading this, I just want you to know that I thank God for your love, your support and your prayers. I don't know what I would do without you.

*My Wednesday plans have changed. I just talked to John and he's coming home soon because he's not feeling well and is coughing. He insists he's not sick, but I don't want him taking any chances. I'm thankful he is cooperating with both Mark's and my suggestion that he spend the day at home and rest. Especially since he has treatment next week. I'm glad he told me he was heading home before I left. If he's home, I want to be here with him. Hopefully the cough is just due to the weather and allergy-related. I have had a scratchy throat and a little congestion during the night, but I don't feel sick.

Friday, January 15, 2010

I love hearing from my readers...

After a very enjoyable day spent with my daughter-in-law and grandsons, I came home to a new comment on my guestbook:

"I recently read your book and I couldn't put it down once I started reading. I can't articulate what reading your testimony has meant to me. I feel as if I could have written it myself (plus or minus a few details) it was so close to my own feelings. I left the church I was raised in (also a Body church) over 10 years ago but have immediate family who are still members. I can't express what it has meant to me just to know that there is someone who not only understands but shares my same feelings. It's almost like confirmation that I'm not crazy. LOL Anyways, in an attempt to keep this short I won't go on, but I just wanted to thank you for sharing your testimony, it has meant more to me than you could ever know."

I don't know the person who wrote these comments. We have never met or spoken. And yet, as complete strangers, we share a bond of spiritual roots and similar life experiences. I don't leave comments on my own guestbook because I want it to be guest comments exclusively, but in case this person ever checks my blog, I just want to say:
Your feedback means more to me than you could ever know.

I have received many messages privately conveying the same sentiments from people all over the country; people whom I've never known and people I once knew a very long time ago and am now reconnected with through the book. I thank you ALL from the bottom of my heart for communicating your heart to me. It has been so rewarding to hear such encouraging, uplifting words from so many readers. And this is not the first time a reader has said that reading the book confirmed for them that they weren't crazy. That was a response I didn't anticipate, but I completely understand.

So many readers have written to thank me for writing this book. And I just want to make sure you know how much I have appreciated hearing from you. From the feedback I'm receiving, two or three times as many people have read the book as have bought the book because it is immediately being shared with someone else. That is very exciting to me because it's not about how many books I sell; it is about the book being read. Some readers have even bought additional copies to give or loan to others. Thank you to all of the readers who have supported and encouraged me. Each of you means more to me than I can possibly articulate.

As I was writing the book, I prayed so many times that my testimony would glorify God and help others (even if those "others" were no more than ten specific people). I also prayed that the readers of the book would feel my heart.

God has answered my prayers. And there have been far more than ten of you. For every unkind remark that has made its way back to my ears, there have been a dozen or more thank yous. And I can't convey my gratitude no matter how hard I might try...to Him AND to you. Thank you for taking the time to communicate with me! And thank you for reading my testimony!

Wednesday, January 13, 2010

Resolutions

I kinda, sorta made an unofficial New Year's resolution this year. And thirteen days into January, I'm doing great. I say unofficial because I have never made New Year's resolutions. I think it's a good way to set yourself up for failure, since most of us don't follow through to our own expectations.

Mine was more about making an effort to do something (whether I am 100% successful or not) and it went something like this:

I am going to make an effort this year to live in the present and stop reflecting so much on my past.

As most of you know, I spent the majority of last year working on a self-published book about my life. Between writing, editing, revising, (agonizing over what I said and how I said it), then combing through the manuscript for errors, I literally lost count of how many times I had read each chapter. I spent an entire year deeply contemplating the past; the person I once was and the person I am becoming in Christ.

The process of reliving and writing about my life's most painful events was far more cathartic than I ever dreamed it would be. One completely unexpected outcome of this process for me was closure. I feel released from the hold the past has had on me. It's another big step in my deliverance. I feel, for the first time, disengaged.

I can't count the number of times John has said to me, "You've left, but you haven't really left." I always knew what he meant. I remained emotionally engaged with my past, with my roots. I had not fully cut the umbilical cord of my emotions. I really didn't know HOW to do that. There were so many unresolved issues I still struggled with. I didn't know how to fully put them behind me. And I wasn't sure that God wanted me to put it all behind me just yet.

As I mentioned in my book, one of the ways I have remained engaged is through a message board for ex-GAC members. I have many times wondered; At what point will I stop engaging in this dialogue? I think I have always known there would come a day when I would not post there anymore. But I didn't know when. I'd periodically received emails over the years from people I didn't know, privately sharing their struggles to break free from this group, and telling me that my posts on the board had helped them; they hoped I would continue to contribute. Quite a few people I knew -- as well as people I didn't know -- said to me, "You express my heart in a way that I can't. You say what I would say if I could express myself in writing." I took that seriously. I have a heart that longs to help -- and connect with -- other people. And posting on the board was also an emotional outlet for me on many occasions. But I knew that it would not be healthy for me to stay there forever.

I submitted my book for publication in late October and received my first shipment of books on November 10. There was a period of exhilaration and excitement following the book's release. The positive feedback I was receiving from readers was extremely rewarding and uplifting. It outweighed the harsh criticism and the judgmental remarks of those (from my past fellowship) who assumed they knew what the book was about without bothering to read it -- and urged others not to read it. There were even those who scrutinized people for being my Facebook friend or joining my group page (Breaking the Chains on Facebook).

I have always struggled greatly with being misunderstood and misjudged. One of the recurrent idols in my life has been the value I place on other people's opinions of me and being understood. So I could best describe the experience of publishing this book as an extremely painful triumph.

During the Christmas season, I allowed myself to grieve the broken and/or lost relationships in my life. And as the season ended, I felt like I was closing a door on the past. It will always be my past, but it doesn't have to be my present. I was telling a friend Monday that suddenly, with the beginning of the New Year, my thoughts have transitioned to the wonderful present God has given me and my desire to live fully in that present, enjoying the life and the many rewarding relationships God has blessed me with rather than focusing on the few I have lost.

For a week now I have been listening exclusivley to Steven Curtis Chapman's new CD Beauty Will Rise every time I get in the car. My husband lost his 18-year-old daughter suddenly and unexpectedly in 2003 and I walked through that season of his life with him. So the songs from this album strike at my heart. As I listen repeatedly to each song on that CD, I connect personally with the Chapman family's painful triumph. And I have been lifted by the assurance of God's love and presence in my life; His faithfulness through the pain of loss and the promise of redemption, as well as the reality that all triumph involves pain.

The last six years have been the fullest and happiest of my life, in spite of my struggles. Reflecting on my past enhances my thankfulness for the new life God has given me. And I will never forget the past or how miraculously God has delivered me out of bondage. But I believe 2010 is the beginning of a new season in my life and new strides in moving forward. I believe writing Breaking the Chains has helped me to cut the cord that has kept me attached to a former life.

I have asked God to help me close the door on the past. I was contemplating making a break from so much constant reflection as the end of 2009 approached. I kept thinking the book is there...if anyone wants to know about my personal journey or convictions, they can read the book...perhaps it's time to stop regularly reading and posting to the message board. I had only wanted to be there if I knew I was helping someone. And I was beginning to ask myself whether my continued presence there was healthy for me. After I started to pray and seriously consider my continued participation, God used a situation on the board to confirm what I was already feeling; that this was indeed the time to quietly remove myself. And I did. I just stopped engaging. Ultimately, something I thought would be extremely difficult -- because I recognize the signs of addiction -- became effortless. The desire to share my thoughts in that forum is gone. Replacing it is the desire to be fully engaged with today's joys and challenges.

John will complete the last of six rounds of chemo at the end of January. A month or two following that we will find out how well he has responded to treatment. We don't know what the future holds. Nobody does, obviously, but that reality is brought home to you in a much more profound way after you receive a diagnosis of "incurable." We know that no matter how long the remission, short of a miracle, CLL always comes back. And then we will be faced with more treatment decisions.

I don't want to forfeit the joy of today because I am reflecting on the pain of the past or anticipating the pain of the future. A desire to live in the wonder of what God has given me TODAY has been ignited in me with the start of the New Year. And I am more thankful for that than I can possibly communicate in words.

Saturday, January 9, 2010

Cousins having fun at Aunt Shari's

Joshua and Nikki play so well together...
I love the expression on Lexi's face in this picture...
Nicole, Reilly, Karlie, Lexi and Matt (cousins and siblings) having a blast together...




My cousin's daughter, Reilly, drove from Illinois to spend the weekend with us. Because of our age difference (I'm 50 and she's 21), she feels like one of my nieces. We have been having a great time since she arrived Thursday.

First thing we did was go to Macaroni Grill for lunch, including a decadent "Lemon Passion" dessert. Some people would like to keep kids "little" forever. Not me. I really enjoy the relationships and interaction as kids grow into young adults!

Yesterday Danny, Rebecca, Chris, Cheryl and all the kids came out for a taco feast. We had a great afternoon and evening. (It felt like Christmas.)

Lexi had to go home last night because of basketball practice this morning. Matt and Karlie stayed. So Lexi was sad to have to leave. But I'm getting ready to meet her and her dad halfway and bring her back so she can enjoy some more fun. You can see from the above pictures what a great time they're having together. And I, of course, just love being their aunt. They are great kids. Having them here is a special treat for me. Can't wait to get Lexi back here with us!

Tuesday, January 5, 2010

My Son, Danny...



My son, Danny, teaches Bible. He is in seminary to become a pastor. Ever since he was a little boy, he had a tender heart and loved God. As a young adult, I can't tell you how many times my son encouraged me spiritually. In times of great distress, anxiety, and fear, he would remind me to repent and rest in God's grace; he would tell me I had nothing to fear because of what Jesus did for me on the cross. Jesus gave up everything that was rightfully His so that I could have what only He truly deserves; the favor of the Father.

In this youtube clip, Danny is charging a graduating class. He is saying publicly some of the very things he has said to me privately when I have greatly needed these assurances.

I think women know - usually more than men - about the human need to be known. I think often men deny this need to themselves as well as to others. But my son grasps this most basic human need.

I listened to this for the first time today, and Danny's words, "Your greatest fear will be your greatest need" resonated in my heart. I know that, personally, my greatest need is to be loved and to feel that I matter to someone. My greatest fear is that I am not really loved and I don't really matter (if I don't do everything exactly to other people's expectations). This fear and insecurity has driven me for too many years of my life. And yet, how many times have I resisted and pushed away the One who loves me most and knows me best, while desperately grasping for the love and approval of other people?

Only in the last few years have I begun to learn how to find my value in God and not in the approval of others. On my strongest day, I'm still weak. I still want people to love and approve of me. But I know only One opinion really matters. And because of Jesus, I have found the acceptance that sustains me even in the midst of the most painful rejection.

Danny, I hope you don't mind that I posted this clip on my Blog. Not all of my friends in Murfreesboro will have the opportunity to know you. And this clip shows your passion and tenderness, which has so many times touched my heart. (I know they will see just a little part of me in your delivery.) I love your heart for God and I love you.

Monday, January 4, 2010

The Hole in Our Gospel

I always have a stack of books I want to read and sometimes I can't wait until I've finished what I'm currently reading to pick up a new book that interests me. When I shop Amazon for a particular book, others will catch my eye and I'll wind up buying three or four (free shipping over $25). Now that I have a Kindle, my "problem" will probably increase because I can hear about a book and have it on my Kindle in about sixty seconds. I downloaded three books within minutes of opening the package.

While reading several books, one will normally capture me more than the others and I will finish that particular book first, no matter when I began any of the others. For instance, I have been plodding through "Lincoln" for a while now. I pick it up and lay it down. It's a very thick, detailed biography. Some parts are easy reading and others are not because there are so many names/relationships to keep straight (generals, friends, family, administration, congress). I truly love reading about another time when life was so different, yet so many things about people and relationships were not so different at all. I always find myself thinking about Solomon's words . . . nothing new under the sun.

Flawed relationships with parents, disappointments, anxiety, depression, loss, condemnation from some and unconditional love from others; challenges, overcoming moments, triumph, success, joy . . . from Adam to 2010; we are all different, yet we have so much more in common than any of us realizes. Biographies strongly confirm this fact.

Many times in my life, when I have been going through something really hard, I've found myself sitting at a busy intersection, looking at all the cars and thinking about how each person in each car has a story, a family, friends, people who love them and people who can't stand them, strengths and weaknesses, joys and sorrows. And then I think . . . One hundred years from now, same problems; different people.

I think this is partly why I love to read true stories about the lives of other people. It reassures me that I'm really not so different from anyone else who has ever lived. But the book that has recently captured me presents the lives and needs of people whose suffering is so far beyond anything I have experienced and whose challenges are so much greater than anything I have ever faced or overcome. These lives are so different from mine that I can't begin to relate, which is why they become statistics to me rather than a reality I contend with personally.

The book that has captured my interest (and my heart) most lately is one I got for Christmas (from Danny and Rebecca): "The Hole in Our Gospel" by Richard Stearns. The author's own personal testimony really touched me, as well as the message of the book. He is the president of World Vision, U.S. He writes about the road that led him to that position. And he addresses our God-given role in the earth to make a difference in the lives of others for the kingdom and the glory of God.

In spite of the fact that we sponsor a little girl in Africa through World Vision and I receive regular emails and newsletters, I knew very little about World Vision prior to reading this book and I knew nothing about Richard Stearns or his life. But this man has truly inspired me and I highly recommend the book. He has donated all of his proceeds from the book to World Vision. So you can help suffering people and children simply by purchasing the book.

I was raised in heavy legalism, thinking that only my achievement of some ambiguous "perfected" status could result in eternal life. Therefore, even good works were self-focused in such an environment. However, since finding the gospel of grace and salvation through the cross, I have discovered that my good works are not to give me some elevated status or merit with God; my good works are to benefit others and be the evidence of my gratitude for what God has done for me through Christ. The good works that are the fruit of the Spirit flow out of a grateful heart and our love for God because He first loved us. Our good works allow the love of God to flow through us to others.

Richard Stearns addresses the tension between faith and works in a powerful way by illuminating how they work together for the glory of God. Our works do not produce our salvation, they are the result of our salvation.

Salvation has been accomplished for us. We can add nothing to the cross. But, as my pastor says so often, "The most dramatic evidence of our faith is obedience."

For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God — not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
~ Ephesians 2:8-10

Stearns writes:

"[T]his powerful passage tells us that we are indeed saved through faith alone, the amazing gift of a loving God, but that we are saved for a purpose: to do the good works God actually prepared beforehand for us to carry out. Simply put, we are:

* saved by faith
* saved for works

By their fruit you will recognize them.
Matthew 7:16

I have at times struggled with the tension between faith and works because of my upbringing. Rule keeping and personal performance were paramount. I was raised in an environment where the evidence of my faith was my outward appearance, not whether or not I reached out to the poor and suffering. Then I found the true gospel and experienced a heart transformation that resulted in a desire to break free from my self-focus and self-absorption. After several years of basking in the love of Jesus and the assurance of eternal life in Him, I have begun to feel a calling to really SERVE God in ways I have not previously explored.

My book was my first real attempt to reach out to others in a greater way. And Stearns' book is challenging me in ways that make me feel so very inadequate. I'm praying that God will show me how and where I can more fully serve Him and glorify Him.

I love the recklessness of faith. First you leap, then you grow wings.
~ William Sloane Coffin

I want to leap. I want to grow wings. I want to be salt and light. I want to make a difference for the Kingdom of God. I don't want to simply bask in my own blessings: I want God's blessings to flow through me.

Friday, January 1, 2010

The Changeling

I rarely post twice in one day, but sometimes the urge strikes.

We just finished watching the movie, The Changeling, (a true story) with Angelina Jolie. Jolie plays Christine Collins, a woman who refused to accept what she was told to accept and refused to say what she was told to say in the nineteen-twenties. As a result, she wound up in a psychiatric hospital, declared unstable as punishment for her non-compliance to men in authority. While in the hospital, she discovered other women who had been declared insane for refusing to comply with the status quo and for standing up to powerful men. It reminded me of this quote:

"Courage in women is often mistaken for insanity."

I watched this movie because, while discussing my book with a friend last Sunday, he asked if I had seen it and suggested I should rent it. I knew very little about the movie and was curious as to why he brought it up in connection to my book. But since he did, I was curious enough to rent and watch it.

As John and I watched this film, the aspect of the story that resonated with me most was the way the male authorities tried to silence the woman (who was telling the truth) by suggesting instability. I have experienced something personally that is so similar, yet I don't remember mentioning it specifically to this friend. During that part of the movie, I looked at John and said, "I didn't even tell Chuck about what has been said about me, did I?" He said he didn't think so.

Without going into the details, suffice it to say that it has been suggested to people -- by someone wanting to discredit me -- that I am and always have been emotionally unstable. By my own admission, I am an emotional and a sensitive person. But I am not, nor have I ever been, emotionally unstable.

I sincerely wondered: Does this person really think that because I am emotional in the way I express myself that I'm truly unstable or was this just a manipulative, underhanded way of controlling other people's minds and influencing them to dismiss me?

I actually let this bother me for several days until one morning I woke up and realized, either way, it doesn't matter. This is one of those things I don't have the power to change and every bit of emotion I expend "contemplating" it is a waste of precious time. And then I made a conscious decision to put this issue to bed for good. I did not intend to blog about it. And then I watched The Changeling...

After watching this true story, I realize that as a woman with a mind of my own -- and the little bit of courage God has given me -- I'm in good company. And I wouldn't have it any other way. I would so much rather be called emotionally unstable by someone attempting to protect a male-dominated status quo than be a good little compliant woman who keeps her mouth shut about injustice in order to have favor. I am so glad I watched this movie. And I highly recommend it if you haven't seen it.

Here is what Wikipedia says about the theme of The Changeling...

Disempowerment of women
Changeling begins with an abduction, but largely avoids framing the story as a family drama to concentrate on a portrait of a woman whose desire for independence is seen as a threat to male-dominated society. The film depicts 1920s Los Angeles as a city in which the judgment of men takes precedence; women are labeled "hysterical and unreliable" if they dare to question it . . . Collins defies male-generated cultural expectations. . . . Like many other women of the period who were deemed disruptive, Collins is forced into the secret custody of a mental institution. The film shows that psychiatry became a tool in the gender politics of the era, only a few years after women's suffrage in the United States was guaranteed by the ratification of the Nineteenth Amendment. As women ceased to be second-class citizens and began to assert their independence, the male establishment used mental institutions in an effort to disempower them; in common with other unmanageable women, Collins is subjected to medical treatment designed to break her spirit and compel obedience. The film quotes the testimony of the psychiatrist who treated Collins. Eastwood said the testimony evidenced how women were prejudged, and that the behavior of the police reflected how women were seen at the time. He quoted the words of the officer who sent Collins to the mental facility: "'Something is wrong with you. You're an independent woman.'" Eastwood said, "The period could not accept [it]".

Happy 2010!

Even though I've lived in Tennessee for seventeen years now, it's still weird to wait for the Rose Parade to air. I had to purposely wake up for it in California because pre-parade coverage began before 8:00 am. It was on nearly every channel in Southern California. The parade doesn't start until 10:00 obviously -- with the time difference -- when you're living in this part of the country. And it isn't on every channel. And there's no pre-parade coverage. I don't normally stay glued to the whole parade. I get distracted and miss lots of it. But I usually try to catch at least some of it. Pasadena was relatively close to where I lived and I recognize many of the sights when I watch. I've been on Colorado Blvd so many times. I've been to the Norton Simon Museum. I feel nostalgic when I see those San Gabriel mountains (on a clear day, when you can actually see them). January is usually beautiful.

I went to bed a little after ten and went to sleep a little after eleven last night. I slept like a rock. I woke up a little before seven. I put a roast in the crock pot. I had a cup of coffee. I checked email and Facebook. I read a few blogs.

One of the blogs I read is "Mutations of Mortality" by Dr. Terry Hamblin. He is well known for his work in CLL and I have learned a lot by reading his blog. He also writes on a variety of other topics, including his Christian faith. And I have been inspired by his spiritual blog entries so many times. Occasionally, he posts movie reviews or just fun topics. He's very well-read, well-rounded, generous, and wise. He's now retired and has battled his own cancer this past year (a journey he has also shared with his readers). And he makes time for answering the questions of many CLL patients and their caregivers on a site I participate in (CLL Christian Friends). This morning I read this statement among his reflections...

"I am learning the value of talking to people. Previously I had thought of conversation as a woman's thing. Men talk to communicate information; women talk to transmit mood. Perhaps transmitting mood is more important than I thought."

Ah yes, transmitting mood. Familiar territory. I do quite a bit of that on my blog. I actually refrained from posting many times during the last few months because the last thing I wanted to do was transmit my mood. I've experienced a lot of peaks and valleys emotionally since John began treatment in September and my book was published in November. And then there was the emotion of the holidays amidst the rollercoaster of cancer and chemotherapy. I had quite a few down days in the month of December. There is no denying it.

However, all of my melancholy lifted on December 24. All the "stress" of the season was over and I could just relax and enjoy. We had our first service, an absolutely amazing Christmas Eve service, in our church's newly constructed sanctuary. And then John and I had a quiet Christmas Eve dinner at the Parthenon. We had decided ahead of time to spend our Christmas budget on others rather than ourselves, but we each had a gift to unwrap. (The original plan was to spend the whole budget on others and not exchange, but then John came home with a package for me and I reciprocated with one for him, even though he told me not to.) He bought an Amazon Kindle for me and I bought several comedy DVDs for him.

Christmas morning we drove to his mom's in Evansville. His family always gets together for dinner on Christmas Day. So we took our time hitting the road and were still there by early afternoon. We had a relaxing evening of food and fun. Saturday we took Marian to an afternoon movie. Saturday evening I had a fabulous dinner at Cork 'n Cleaver (Salad Bar, Lobster Tail and baked potato). And Sunday morning we went to church, then spent some time with friends over lunch at their house.

In spite of the fact that this has been John's treatment week, I've noticed that I have not been sad or melancholy since Christmas Eve. I haven't made any formal New Year's resolutions, but I have a couple of spiritual goals for the new year in my head and heart. One is living entirely in the present; less focus on the past and less worry about the unknown future. Complete trust and willing dependence on my Heavenly Father is my number one goal. Less focus on other people's opinions of me and more focus on other people's welfare. I want to love others unselfishly and not out of my own need for their returned love.

And, of course, my highest personal aspiration for 2010 is to be the best caregiver-wife any husband ever had, as John continues to fight the CLL battle.