Sunday, October 31, 2010

Epiphanies, Struggles and Being An Object of God's Mercy

Occasionally I find a book so helpful and inspiring that I want to read it more than once. Actually, there have been many books that I've felt like I wanted to read again the minute I finished them. But there are only a few that I have gone back and read multiple times. One was Mere Discipleship by Lee Camp. That book was so challenging spiritually; I read it four times. Another book I've read twice and am now reading for the third time is When People Are Big and God Is Small by Edward Welch.

If you ever decide to pick this book up and read it yourself, don't give up on it if you feel like it starts out slowly. The further you go, the deeper the insight you will gain. But be prepared. It will expose the self-absorption that is in all of us. I'm reading it right now with my small group and several have made the comment that they have never thought of themselves as self-absorbed before, but the book has exposed the root of certain thoughts and attitudes never previously put under the microscope. We tend to define self-centeredness in the extremes or in the obvious. And, of course, we are not often looking for this trait in ourselves. We tend to be much more aware of it in other people.

According to Welch, it isn't that we should think less of ourselves, it's that we should think about ourselves less. We should need people less (for our own longings) and love them more (unselfishly). Why? Because we were created in God's image and for His glory.

This means that the essence of imaging God is to rejoice in God's presence, to love Him above all else, and to live for His glory, not our own. The most basic question of human existence becomes "How can I bring glory to God?" -- not "How will God meet my psychological longings?" These differences create very different tugs on our hearts: one constantly pulls us outward toward God, the other first pulls inward toward ourselves (pg. 158).

This book has helped me tremendously and I would venture to say this won't even be the last time I read it. I read to learn and gain insight into what I may not see in myself on my own. At times I have even prayed for God to expose what He sees in my heart that I am blind to. It would be easier not to look at it, but I want to know. And I certainly don't want to be the only one who doesn't see something in myself! So I try not to consciously choose denial. And I try to examine my motives, even my motives for doing something good. I don't want to do things for the wrong reasons. I want a pure heart. But I know I can never have a pure heart unless I ask God to expose what isn't pure.

I love this book because it addresses my longing for the acceptance and approval of others in a completely different way than most books -- even some Christian books. This book won't help you think more highly of yourself because that isn't the biblical answer to the problem. Welch focuses the reader on God and glorifying Him instead of our own needs and how we can get people to meet our needs.

One of the ways Welch does this is by identifying through Scripture what our real needs are and where we have elevated our desires to the category of psychological needs. This is huge for me. Let me explain.

All my life I have believed that I NEEDED to be understood by other people. I have allowed that NEED to be a driving force in my life. And it has only recently dawned on me that because I have elevated a desire to a NEED, I have gone to great lengths (especially in certain relationships), attempting to be more fully understood. And in doing so, I have come across as trying to force others to see things my way. I could just reject that observation as untrue (because it is a misperception of my desire). I know that the driving force in me is to be understood, not to be right. But the last thing I want to do is dig my heels in and refuse to consider how my personality and delivery is perceived by others. Where I can possibly change something in me that leads to being misunderstood, I want to be willing to change.

But here is my recent epiphany (and the book has helped me see this ... finally): I do not NEED to be understood. The core problem is that I have elevated a desire to a need. At some point in my life, I formed a belief that I couldn't be at peace if I was misunderstood and I have allowed that to consume me and drive me. So many times John has asked me, "Why do you care?" And I frequently say, "I don't know. I just do." But the reason has been exposed. Suddenly, I see it as clear as day. The reason is that I have elevated a desire to a need.

A lightbulb has gone on or God has flipped a switch in my brain. I really don't know which. But suddenly I feel at peace with being misunderstood. The desire to be understood -- especially by significant people in my life -- is not wrong. But it's not a need. Not only will I survive without understanding, but I can be content and untroubled in the face of it. I feel like something has been crucified in me (or maybe an idol has been destroyed). Either way, it's liberating. I can't describe the freedom this epiphany has brought to me mentally and emotionally.

This epiphany came through reading Chapter 8: Biblically Examine Your Felt Needs. (Why it took me three times to get it, I don't know. But this time I am reading on the heels of recent frustration and a stronger desire to outgrow this compulsion.)

This morning I had another epiphany while reading Chapter 9: Know Your Real Needs.

As I've written before on my blog, I struggle with prayer. I thank God all the time for His mercy, His faithfulness in my life and the blessings He has poured out on me that I am so undeserving of. There is no struggle in thankfulness for me. But I struggle with the petitioning part of prayer. I always have. There is something in me that resists asking God over and over for the same things. It's not pride. I don't have a struggle asking for help from God or anyone. And I believe He is powerful enough to change any circumstances no matter how great or small, if He chooses to. But many times He doesn't seem to choose to.

I've watched many people in my life pray fervently and believe with all their heart for healing that never came. I have not struggled with accepting God's will. I have to honestly tell you that I am not even inclined to question Him. And I know this is very unusual, but I can't remember ever being angry at God. Some people say it's okay to be angry with God. But in my mind, to be angry with God is arrogant. Being angry with God suggests that I am judging Him and His actions as unjust or unloving. No matter how I have struggled to understand His will in my life, I have never felt it appropriate to be angry. I accept that He sees and understands things I don't. And I believe He knows best. I guess it is that belief that keeps me from judging Him based on an outcome that doesn't meet my expectations. I feel very unworthy of any of my blessings. And I do not feel entitled to a thing He has done for me.

But in spite of all that, I don't understand why He wants me to ask over and over for the same thing when He already knows what the outcome is going to be and what is best.

I especially struggle with this when it comes to physical healing. So many times I have watched people die (especially from cancer) in spite of all the many prayers being sent up for a physical healing. And often these deaths are premature. Yet I've heard numerous people -- people I have tremendous respect for spiritually -- insist that it is always God's will for us to be healed. And I've heard scriptures quoted that certainly do seem to support that belief. But I don't see how that can be true in this life. Death is a part of life in a fallen world. If it was always God's will to heal our bodies, no believer would ever experience physical death. Probably in part due to some painful experiences in my past, I believe this mindset puts the responsibility (or blame) on the person if they are not healed. If we say that "if our faith is strong enough" it is always God's will to heal us, then it must be a person's own fault if they don't receive that healing.

I watched my mom die of cancer while being told by everyone around her that it was not God's will for her to die; that she was going to be physically healed. My mom talked to me about how this made her feel several times. She told me that if it was God's will to take her -- even prematurely -- she accepted His will. She was thankful for the blessed life God had given her even if it was cut very short (she was diagnosed with terminal cancer at the age of 48). But when everyone started insisting that it was God's will for her to be healed and the healing did not come, she started to blame herself. I know she believed God could heal her. But I will never forget her telling me, in tears, "I feel like it must be my fault." It troubled me that my mom was robbed of the peace she could have had in accepting God's will because everyone around her insisted they knew what God's will was. Apparently it wasn't God's will (since she died). Or it seems to me that you have to blame someone for it not happening. As I said in my book, I don't believe God ever told a single person that He was going to heal my mother physically. God is not a liar. I know all of those impressions and experiences came from loving hearts. I've never been angry at anyone. But the experience made an impression on me that remains to this day -- more than twenty years later.

That and other situations concerning physical healing have left me confused on the subject. And I guess there is a part of me that feels like I'm just setting myself up for a harder fall if I "expect a miracle." I have more peace in my heart when praying, "God, Your will be done. Not mine. Give me the grace I need to accept Your will." But this attitude is not a reflection of a lack of faith. I don't know what more faith a person could have than to submit themselves to God's will and not question Him because things don't go their way.

As you know if you're reading my blog with any frequency, I am once again engaged in this struggle with physical healing and what is or is not God's will for my loved ones battling cancer. I pray regularly for friends; that God will remove pain or not let someone suffer or that their bodies will be healed. On Facebook, I read a comment from one loving Christian friend to another friend saying that she knew God would not let her loved one suffer because she was such a good woman. But the Bible doesn't tell us that if we're good people we won't have to suffer. And if we believe that, then wouldn't we believe the opposite; that people who suffer must have done something to deserve it?

I don't want people to suffer and I don't want to suffer either. I'm not suggesting that we shouldn't pray these prayers. I'm just explaining my struggle. My mind has been plagued with these thoughts lately. But this morning I read this:

Instead of the image of God being a place inside you -- a hollow core that is passive and easily damaged -- the image-as-bringing-glory-to-God is found in the way we live.... Ultimately, the awesome responsibility and glorious privilege of image-bearing is expressed as simple acts of obedience that have eternal implications. Imaging God is loving Him and loving your neighbor. In the same way that God's holy love and justice are manifested in concrete acts, so should ours be. Wherever you find faith and trust, you will find people imaging God:
  • In meeting with God's people, for God's glory.
  • In praying for each other and the world, for God's glory.
  • In listening to a spouse rather than being defensive, for God's glory.
  • In enjoying marital sexuality, for God's glory.
  • In parenting, for God's glory.
As I read this list (specifically the second example), I had the answer to my question. The answer is: I pray because it glorifies God. To make it about the things I have made it about is to make it about me. I needed the reminder that it's all about Him. My purpose in life is to glorify Him.

And then in church this morning, we sang this song (Michael W. Smith):

I'm coming back to the heart of worship,
And it's all about You,
It's all about You, Jesus
I'm sorry, Lord, for the thing I've made it
And it's all about You,
It's all about You, Jesus

I've sung this song many times. The first time I remember singing it was in chapel at Lipscomb, at a time when I was very confused and in a lot of pain. Every time I sing this song, I am taken back to that time in my life. Not taken back TO the pain, but reminded of my miraculous deliverance. Although I had no way of knowing it, God was about to display His mercy in my life in ways that would astound me. I never could have imagined the life and especially the husband He gave me.

He didn't show me mercy because I had such great faith or because I was in any way deserving. I believe He did it to make the riches of His glory known to this object of mercy (Romans 9:23). And I believe He displayed His mercy in me for the purpose of touching the lives of others through me.

I talked to yet another person (a reader of my book whom I have never met) on the phone Friday night for almost three hours. John doesn't understand how I am able to do this. But my book was a mission for me and when it results in someone wanting to speak to me personally, I try to make myself available. This particular person told me that looking at my picture made her weep. She said she could tell that I was normal and happy just by seeing my face in the picture and she asked God how that could be. (She spent many years in one of the churches affiliated with the one I was raised in and is carrying the heavy baggage.) She said that getting mixed up with the group had caused her to lose everything precious in her life and she felt stupid for having been sucked in, yet she was still afraid that God would remove His covering from her life for leaving. This fear had been so deeply instilled in her (about leaving the group) that she could hardly believe the happiness she saw in my countenance. I could tell it had profoundly affected her and caused her to want to talk to me. I told her that God has not done what He's done for me simply to bless me. He intends for my testimony to touch the lives of others.

I prayed for her when I went to bed and I thanked God for displaying His mercy in my life. Every time I hear from someone like her, I feel thankful for what I have gone through -- suffering and all -- because my life and all its struggles can be a testimony of God's deliverance and love.

I knew my next post was going to be extra long because all of the things on my mind are connected. I knew I wouldn't be able to gloss over any part of what God has been showing me. I know some of you can't always make it to the end of these lengthy posts. And I understand. But if you have made it all the way to the end,

God Bless You!

AND I sincerely hope something I have shared has encouraged you.

Thursday, October 28, 2010

Confessions of Weakness from a Bad to the Bone CLL Patient Advocate

Today was another Sarah Cannon day. Let's just say I have spent a fair amount of time there in the last three years.

John had his first abnormal blood test in April, and was officially diagnosed in June of 2007. He had eight rounds of Rituxan in 2008, then chemotherapy (FCR) in 2009, and is now in a clinical trial receiving CAL-101.

Marian, John's mom, was diagnosed in January of 2008. She has progressed steadily but very gradually and has only recently needed to begin treatment. She is enrolled in a clinical trial studying Rituxan in combination with CAL-101. Her trial is focused on older, previously untreated patients receiving the two drugs together. John's clinical trial is studying patients receiving CAL-101 as single agent after having failed or relapsed from other treatments. (They are both doing well so far.)

CLL is so different in every patient. John's CLL progresses in his lymph nodes, more like a lymphoma. Marian has had a few slightly enlarged nodes, but her progression has been primarily in the blood and bone marrow. Marian was diagnosed in her seventies and John in his fifties. It's very unusual for a parent to be diagnosed after their offspring.

There are prognostic markers in CLL which can predict what category of risk the patient is likely to fall into, although not with absolute certainty. John and Marian both have "mixed" prognostic markers. They each have one bad marker, but not the same bad marker. They have familial CLL, but their CLL is still very different. This is not a one size fits all disease. And responses to treatment also vary. There are many factors to consider in every decision one makes.

I realized early on -- through a tremendous amount of research -- that my involvement as a patient advocate and an educated caregiver could make a significant difference in John's care and in his future health. At a time when I felt about as helpless as I have ever felt, there was one productive thing I could do: read and learn everything possible about his disease. It made me feel like I was doing something  ... besides crying, which was not helpful.

In those early months, I had no idea that I would soon become a patient advocate/caregiver for John's mom as well as John. But that is exactly what happened. And now the joke is that I see Dr. Flinn -- and spend twice as much time in the treatment room -- as either one of them do. Neither of my patients have been to one appt. without me. And as long as God keeps me in good health, they never will.

As far as I'm concerned, whether it's nurturing my grand babies, my husband or my mother-in-law, caring for the people I love is the most important "job" I will ever have. And I want to do it well. I take pride in doing it well. And I hope that is an acceptable pride (spiritually). If it isn't, then I guess I need to start repenting.

*Here's the confession part:
Sometimes the emotional stress takes a toll on me and my edges get frayed (ever so temporarily). Although I can be a tower of strength in the intensity of a crisis, I can come unglued internally over something very small. I have never been more aware that every trait we possess has two sides. And the flip side to emotional sensitivity is ... emotional sensitivity. I feel everything deeply -- good and bad. Although this trait enhances my ability to respond compassionately to others, it can also just flat ... out ... wear ... me ... down.

Lately I have felt extra tired. And it's not because there are so many physical demands on me. It's the emotional stress I put on myself; wanting to be the perfect everything for all the people I love and knowing the reality of how inadequate and flawed I really am. I can look so amazing and strong and capable to the outside world, but I know how weak I can be. I feel my weakness even when I'm "being strong." (If you've been a caregiver to anyone fighting a serious illness, you know exactly what I'm saying.)

I am completely dependent on God's grace and mercy. Otherwise, I will be strong in short spurts, but I will never endure over the long haul. I'm just too prone to hit an emotional wall with a splatter right after I impress you with a successful high hurdle. LOL.

Words of love and affirmation are big motivators for me. I can be feeling so lousy, and yet all it takes is one significant person in my life saying, "I appreciate you" or "Thanks for taking such good care of me" and my batteries are instantly recharged. This past week, I have had not just one but numerous family members say or write very loving and affirming words to me.

None of them may ever know what a boost they have given me or how low my batteries were. Hopefully, if they read this blog post, they will.

~~~~~

As most of you know who have been reading my blog, another pressing concern has been John's sister (Lillian), who has been battling cancer of the head and neck for over a year. She really needs our prayers. After surgery, chemo and radiation last year, her cancer is back and it's aggressive. The tumor has grown at a fast pace and it is inoperable at this point. She is not strong enough physically to endure more harsh chemo. (She eats only through a feeding tube and is in constant pain.) She is going to begin a gentler treamtment (a monoclonal antibody) tomorrow. Although it will not cure the cancer, it will hopefully shrink the tumor, slow the progression of disease and relieve symptoms to give her better quality of life. Our entire family greatly appreciates your prayers.


Tuesday, October 26, 2010

Redeemer Podcast (Shared By a Mom With a Grateful Heart)

For any of my friends and family who might want to listen, this is a sermon Danny preached Sunday. (It's about 20 minutes in length.) He has had a passion for the gospel since he was very young. Prior to pastoring, he taught Bible to elementary school kids. Kids are another one of his longterm passions. As a mom, it's very rewarding to hear my son preaching the gospel.

I now have three favorite preachers: Danny Bryant, Allen Jackson and Tim Keller. (Yes, in that order. LOL. And I'm sure #2 and #3 won't mind.)

"Don't Be Afraid" - Danny Bryant

Sunday, October 24, 2010

Simple Things Can Make My Day

A lighthearted blog post for a change...

John and I have a typical conversation on Sundays. I start asking what we're going to do for dinner about mid-morning. He looks at me (every time) like I'm some sort of alien. He doesn't think about what he wants for dinner until it's time for dinner. But I like to plan ahead (especially when it comes to eating).

One reason I ask early is because I want to know before the last minute if I'm going to cook. The other reason is that I like to be able to look forward to what I'm going to eat. I have been this way for as long as I can remember. Food is way too important in my life.

Today our conversation was untypical.

Shari:  "I'm not going to ask you over and over what you want for dinner today. Just tell me if you think of something you want me to cook."

John:  "I was thinking we could eat those king crab legs tonight." (He frequently buys fresh seafood from the Pacific Northwest and recently ordered king crab legs online from Alaska, which are in the freezer.)

Shari:  "That sounds great! I'll make roasted red potatoes and steamed fresh veggies to go with them. I love it when we decide what we're doing for dinner in the morning!"

John:  "Well, I'm glad I could brighten your day, Dear."
(And we both laugh. I'm glad he finds me amusing -- instead of annoying -- in the areas where we are different.)

I will look forward to our king crab dinner all day now. I just have to stop thinking of additional side items.

We gave up our Titans tickets so someone else could go today and we're watching at home. We went to church last night. So I will not have to leave the house today. I love days when I don't leave the house. I will not have to style my hair or apply a drop of make up. (Yes!) I'm sipping my third cup of coffee, sitting on the couch with John, watching the Titans in my PJs, and I know what we're having for dinner.

Right now, the only thing keeping this from being a perfect day is the way the Titans are playing.

Friday, October 22, 2010

Update on My Sister-in-Law

This is a difficult post to write. But I have been asking for your prayers and I have been trying to keep you updated. And my sister-in-law has given me her blessing to keep you updated on my blog.

Back in August, I wrote this to her about my blog in an email:

"If I ever say anything that makes you uncomfortable, will you please tell me? I sure wouldn't ever want to violate your privacy. I tend to be extremely open."

And she responded:

"Anything you say in your blog is going to be fine with me.  I trust your intelligence, tact and talent.  You can even 'rough me up' a little if you want."

I wasn't sure what she meant by that last sentence. But that's Lillian. She is a colorful person who often uses her Howerton humor to deal with her circumstances.

As I mentioned in an earlier update, Lillian had scans yesterday and a biopsy today at Vanderbilt. We were hoping for better news than we received. The malignant tumor (returning cancer) that began in her lower jaw has spread all the way up to her ear already. Her tongue is involved. And I'm not absolutely certain if it's all the same tumor, but she also has cancer growing on the outside of her lower jaw.

The surgeon told them that he would not recommend more surgery. The surgery he would have to do in order to remove all the cancer would remove too much of her facial structure. She would need extensive reconstruction, bone grafts, skin grafts, etc. And she is already very weakened by previous surgery and treatment, as well as the cancer. He said cutting on her again would rob her of any quality of life. He recommends more treatment to hopefully shrink the tumor as much as possible. He is going to consult with her oncologist in Evansville on treatment and she will be able to receive it there without having to travel back and forth to Nashville.

I'm hoping they will be coming to spend some time with us when they leave Vandy tomorrow.

Your prayers for Lillian and our family are greatly appreciated. Lillian will be 59 in November. The above picture was taken the day John and I were married (January 4, 2004). She's my Sis as much as she is John's.

When I called John today to tell him the report, I told him I couldn't imagine what his mom must be feeling as a parent. And then I quickly added, "But I know you can."

Another quote...

"No person is your friend who demands your silence, or denies your right to grow."
~ Alice Walker

I love reading quotes and I read quite a few last night. I loved this one so much. I added it to my Facebook page, but wanted to share it on my blog as well. It is simple, but so profoundly true.

Sharing my perception of my own life's experiences and struggles has been highly objectionable to some. My personal growth as a human being has been completely unacceptable in certain relationships. But my silence has been a requirement in many. I don't just mean public silence. There have been people in my life who have never wanted to hear or understand me enough to listen with their heart. My feelings were either a personal affront to them or just an unwanted imposition on their time.

I'm learning to stop pursuing those kinds of relationships, but it's been a slow process for me. Marrying John has been a huge help. He sometimes thinks his words fall on deaf ears, but I really do spend a lot of time contemplating his insight when it comes to these kinds of disappointing relationships and the way I should detach from them emotionally.

When I was expressing the pain of loss I felt over certain relationships, someone recently suggested to me that I could have chosen not to express myself and possibly maintained those relationships. It was my choice.

I've thought about that a lot. My conclusion is: that's not a choice. When a person is not free to express themselves honestly without consequences (such as being vilified), there is no genuine relationship. There is only an illusion or a fantasy or a hope of one. Perhaps even a false hope.

This was my status update on Facebook a few days ago...
"Tonight I have been thinking about all my quirks, insecurities and flaws. I am humbled by my own inadequacy; thankful for God's grace and also thankful for the people in my life who love me exactly as I am: warts and all. This is truly a blessing that I do not take for granted."

Rather than focus on those who have asked for something I cannot give (silence), I am learning to focus on the many blessed relationships I enjoy today; relationships in which I am loved and valued for being who I am. There have been so many conditional relationships in my life, I truly don't believe I could ever take anyone's unconditional love for granted.

For so many years of my life, I did not feel unconditionally loved or accepted by anyone. Not even by God. But that isn't true anymore. And I'm so thankful.

One of my goals in this life is to love others unconditionally and accept them just as they are; not expecting them to meet any specific requirements or standards I set for them. Although I will never be able to remain silent when it comes to blatant injustice (and I don't believe I should), I don't want to be in control and I don't want to judge. I just want to give the love I have needed. I know that I can only do this when I allow the love of God to flow through me. I will have to get outside myself sometimes to do this. And sometimes I will fail. But God's grace is sufficient to cover all of my failures. And I know that His strength is made perfect in weakness. So I am never without hope.

Thursday, October 21, 2010

Do you ever focus endlessly on your flaws?

I sure do. Sometimes obsessively.

This happens most when I have been trying really hard to be the perfect anything. You fill in the blank. It doesn't matter what capacity I am shooting for perfection in; I will always fail. Even -- or maybe especially -- if the goal is perfect communication. You see, the problem is that I'm severely flawed. And nothing makes that more glaringly apparent to me than stress combined with my own expectations of myself.

Whenever I feel like I've not said something perfectly or as well as I could have -- which is often, because I'm expressive -- I will obsess about it for days. And if I'm obsessing about it, I tend to talk about it. I'll keep trying to say it better in the hope of being more fully understood. But sometimes I keep talking when I really should just accept being misunderstood.

After all -- note to self! -- If I don't fully understand myself all the time, how can I expect anyone else to?

I was reading quotes on stress tonight and found this one (which definitely applies):

"A woman under stress is not immediately concerned with finding solutions to her problems
but rather seeks relief by expressing herself and being understood." ~ John Gray ~

Yep. Me to a tee.

And this Peanuts quote describes precisely how I have been feeling about myself lately.
(It also made me laugh.)

"Sometimes I lie awake at night and ask, "Where have I gone wrong?" Then a voice says to me,
"This is going to take more than one night." ~ Charlie Brown / Charles M. Schulz) ~

The reality is:

"Believing that you must do something perfectly is a recipe for stress, and you'll associate that stress with the task and thus condition yourself to avoid it." ~Steve Pavlina ~

However, here's where I excel:

"Yes, Mother. I can see you are flawed. You have not hidden it. That is your greatest gift to me."
~ Alice Walker ~

~~~

In a recent conversation with my son...

Shari: "This is kind of ironic for ME, but I can't think of the word I'm searching for."
Danny: "Bet you can think of eight hundred."
(Whole family: LOL)

Tuesday, October 19, 2010

Quick Update...

It's been a crazy, hectic week and I have not had time to sit down and write on my blog.

However, I did want to post a quick update for those of you who are checking back to see how things are going.

Lillian is scheduled for ct scans Thursday and an out-patient biopsy on Friday. I'm not sure how long it will take to get the biopsy results. But what they find out will determine the course of treatment.

I am feeling much better than I was last Thursday night. Sometimes we try so hard to be strong that we wind up internalizing our emotions without even realizing it. Because I'm so expressive and open, a lot of people would probably not see me as someone who internalizes. But I do. I just don't do it consciously. I don't decide to stuff my feelings and I don't have a need to hide my struggles from anyone. It usually happens when I'm trying to be strong for someone else.

It's only when that emotion is triggered (and it feels like a dam has burst) that you realize you've been internalizing a bit too much. For me, this usually means tears. But tears aren't all bad. By Saturday night I was bouncing back. And the last three days have been therapeutic in many ways.

Just wanted to let you know that -- once again -- I've survived and thrived. God is good.

Friday, October 15, 2010

The Emotional Rollercoaster of an Emotional Caregiver

The sky is not falling. I'm just dealing with a lot of stress and so much emotion. I am actually a very strong person and very resilient. But occasionally my emotions take a dive. And they have tonight.

I have learned that sometimes you just need to cry. And that's what I've been doing. Most people would just go to bed and get some rest. But I have always needed to pour my heart out. I need to say, "I'm hurting!" And so I'm here on my blog, I'm releasing emotion. And then I will sleep.

I posted on Facebook that I felt overwhelmed and I got many comforting responses right away.
This was one of my favorites:
"From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I." -David, the psalmist of Israel
(Thank you, Larry! I needed the reminder.)


My mother-in-law is receiving treatment for her CLL (chronic lymphocytic leukemia).  And she is doing well, by the way. I took her for treatment today and sat with her for several hours while she was being infused. By now I have spent lots of hours in the treatment room. First with John and now Marian.

When we arrived, I saw a sweet little older lady I first met two summers ago while John was undergoing his first treatment. She was being treated with chemo for multiple myeoloma and wasn't doing well at all. She was so weak, could not eat, and told me back then that she was about to give up. I felt so instantly attached to her and I asked about her after that. The next time I saw her (about a year ago), she was in remission and looked much better. She said she was hoping for a year in remission. I saw her again this morning. She still looked good (much better than the first time I met her). So I asked if she was still in remission. She said no, she wasn't. And she told me the doctor had told her there weren't any treatment options left for her. She was there because she was being treated for a blood clot in her leg. Despite her grim prognosis, she was smiling and telling me that her daughter is getting married in a garden ceremony this weekend. Just about that time the research nurse came up to talk to Marian and I needed to listen. So I excused myself. I had planned to come back to the conversation, but I saw her get up and leave with her husband and daughter while we were still speaking with the research nurse. I wish I could have hugged her before she left. It is very possible I will not see her again. It bothered me.

Marian's treatment was uneventful. She did have a pretty sharp increase in her white count today (from last week). But that is a common occurrence with CAL-101 in the first several weeks. Things should level out in time. I sat with Marian in the treatment room until John arrived for his appt. at 1:30 and then I left Marian to go into the exam room with John.

John is doing fine and still responding well to CAL-101. Prior to the CAL-101 trial, however, John failed chemotherapy (FCR). And at that time Dr. Flinn brought up the subject of stem cell transplant. Transplants for CLL are risky and not always successful. Even when they are, there can be some very serious side effects and complications. Some patients don't make it and some relapse within a few short years. It's generally thought of as a last resort option. And the transplant itself is grueling. So when CAL-101 worked so well for John right out of the gate, I very intentionally put the scary thoughts of transplant out of my mind entirely. I assumed we would not be discussing it again as long as John continued to respond to CAL-101.

Well, Dr. Flinn brought up the subject today. I wasn't expecting that and it caught me off guard. He is just being a good, thorough doctor. Since CAL-101 is not a proven drug over the long haul, he is of course wanting us to have a back up plan and not wait too long. He stressed that some patients don't get good results because they wait until they're in such bad shape to go for the transplant. And not only do I understand his perspective, I respect his professional opinion. He is one of the best CLL specialists in the country. But I wasn't prepared to revisit that subject today. I have been trying to enjoy the fact that CAL-101 IS working right now and not allow myself to think about the "what ifs" of it not working. To be honest, when I allow myself to think in those terms, I feel the fear creep back into me and it can be overwhelming. I have done really well not to let myself think about things like lymph nodes coming back and having to change course in treatment. And I didn't want Dr. Flinn to make me think about that today.

I cried in the parking lot just from having the subject mentioned.

The truth is, I have been feeling kind of fragile this week. I take my caregiving role very seriously and sometimes I internalize a lot of emotion while being strong where I need to be. I have been worried about my mother-in-law's progression and treatment. And I have been worrying about John's sister, who has been battling cancer of the head and neck for over a year. She has been through so much. And now she has more cancer and is facing more surgery and radiation. I've known for the last couple of weeks that she and her husband would be here tonight following a consultation at Vanderbilt this afternoon.

What Lillian has been through makes CLL look like a walk in the park. And now she has more cancer growing on the outside of her chin, as well as in her lower jaw. She lives in Evansville and it looks like she will receive the next course of treatment here in Nashville. Next week she will have surgery and a biopsy of the cancer to determine if it's the same or a different cancer than she initially had. Pain management is going to be part of her treatment, as well as more radiation to hopefully shrink the tumor. Trying to remove it surgically would entail removing a lot of the lower part of her face and extensive reconstruction. She is still weak from her previous surgeries and has not fully recovered. So seeing her tonight and hearing all of what she is still facing hit me pretty hard. I tucked her in and told her how much I loved her. And then I just came downstairs and cried. Everyone else is in bed. But my heart is just aching.

For those of you who read my Facebook posts tonight, I hope this gives you a little more perspective on my day and my emotions. I don't know why I am this way, but I have a need to cry out when I'm in this much pain. And by crying out on Facebook, I got the reminder I needed (to cry out to the Rock), as well as a lot of comforting words from people who wanted me to know they love me! I needed both.

Thank you for your prayers. I will be a new woman in the morning.

Tuesday, October 12, 2010

I love this!

I don't know the name of the person who said this, but Hoda Kotb has shared this quote several times on the Today show this morning (from her book). A gentleman on an airplane said this to her and she was sharing how many times she has reflected on it...

"Don't hog your journey. It's not just for you. You can take your business and shove it deep in your pocket and take it to your grave. Or you can help someone."

I guess I love it so much because that is exactly how I feel. Not everyone understands those of us who have a need to share, to express, to be open about our lives (and thoughts and feelings). I am so thankful for those who do.

Sunday, October 10, 2010

Little Things

Let me begin by saying: Don't feel sorry for me.

I preface this post with that statement only because I am going to write a little bit about my past in order to share how much the little things (like dancing with my husband at a wedding) mean to me today because of all the normal, wholesome things that were forbidden when I was young.

I am not angry, bitter, or even sad about the things I did not get to do as a young person. I am just thankful for the freedom and the life I enJOY today! I am completely convinced that I get far more enJOYment and pleasure out of little things (like dancing at a wedding) than the average person my age. And I believe it has a lot to do with the way I've lived in the past.

If you've read my book, you already know how strictly I was raised and how many normal activities I was forbidden to participate in while growing up. But lots of people who grew up in strict religious homes (of various denominations) experienced similar childhoods to mine. I don't feel like the Lone Ranger. And the truth is; I didn't have a bad childhood. I grew up in a home where I was loved and cared for. Every physical need was met and I did not suffer abuse. Oh, that every human being in this world could say that about their childhood! But since I recognize that many cannot, I have never felt sorry for myself about the little things I missed out on.

However, I do feel like I was -- in a sense -- robbed of many of the typical (and enjoyable) experiences of youth. For instance, I was never permitted to attend any school function in junior high or high school. I never got to go to a single football or basketball game with friends. I wasn't allowed to wear the "normal" clothes my friends wore. I could never have tried out for cheerleading. Proms and dances were off limits to me; dancing was considered sinful and worldly. I wasn't even permitted to go into the gym during lunch for a junior high school "sock hop" in ninth grade.

The only thing I ever remember looking forward to as a kid was dating and getting married. And I married the first person I dated. It probably goes without saying that it wasn't a healthy marriage ... even on the best of days.

Perhaps now you are understanding why I began this with "Don't feel sorry for me." I am not sharing this to illicit sympathy. I'm leading up to something.

My life is so different today.

I got my first taste of genuine freedom at the age of forty-three. I am not the personality type to go to extremes in anything. So I have never been inclined to drink too much. I've never taken a recreational drug. I've never smoked anything. And I've never even wanted to. Those indulgences are just not temptations for me. But simple pleasures, like dancing with my husband at a wedding, are to me at fifty-one what Disneyworld is to a ten-year-old. No matter how long I live, I think I will always be making up for lost time. I don't take for granted even the simplest joys in my life today. It feels wonderful to do normal things and to enjoy life without feeling false guilt and the fear of condemnation, judgment and contempt.

It's been years since I have allowed someone to control my life and personal choices. But, believe it or not, there are still days when I open my closet and think, It feels so good to be free to choose my own clothing and dress according to my own conscience without the fear of being judged. In my present life, I never worry who I might run into or how they might look me over if they see me at the grocery store in anything but a long skirt or dress. If you have not lived that way for the majority of your life, you probably can't imagine this. But for me to never give a thought to what someone is going to think of me for wearing earrings or a pair of jeans or a skirt that shows my knees -- well, that is still something I appreciate about my life as it is today. I am fifty-one years old and yet I still think about how much I value and enjoy these simple freedoms.

When I watch my teenage nieces enjoying the wholesome pleasures that I missed out on (playing sports, going to football games, being on the homecoming court, making the cheerleading squad), I feel so happy for them. Just looking at their Facebook pages and seeing how "normal" their lives are as teenagers (compared to mine) makes me feel not only happy, but very thankful. I feel such joy that they are getting to do the things I missed. (And I'm thankful that they are not even thinking about marriage yet!)

I didn't get to have as much fun as they are having at their age, but I am thoroughly enjoying my life today. And rather than feeling resentful, I can't help but be thankful for the contrast between my past and my present. I believe the joy I experience in every aspect of my life today is deeper and sweeter because I haven't always known what it's like to be free.

In all those years, I never thought of myself as an unhappy person. I've had a lot of personal challenges in my life, but my coping mechanism has always been to deal with those challenges by focusing on my blessings. I tried to remind myself of people whose lives were harder than mine rather than focusing on those whose lives seemed easier than mine. And that worked for me. It worked so well for me that I stayed in a very oppressive life until I was 43 years old.

Only in hindsight, and as a result of the stark contrast between my past and my present life, have I fully realized the level of toxicity I lived in for all of those years. But when I reflect on those years, I don't feel like they were wasted. God was preparing me in many ways for the life I have today. And He was equipping me with the insight that enables me to be a greater source of comfort and encouragement to others through all of those experiences. What I missed out on is so miniscule in comparison to what God has done in my life through every challenge.

The appreciation I feel for the life God has blessed me with today is so deep. And the joy I have today -- the joy I always longed for and could not find -- is so very sweet. Tim Keller has said that our greatest joys are birthed out of our greatest suffering. And that statement has been proven true in my life.

Last night John and I attended a very elegant wedding and reception. It was a beautiful celebration of family and friends. And I got to dance with my gorgeous husband. The whole time we were dancing, I was thinking about how much I love him and how glad I am that I found him ... and how much I love my life in Murfreesboro. It still seems surreal. I could never have imagined being this happy. And, ironically, I was never chasing happiness. I did not believe my happiness was what mattered to God.

I know that dancing is just dancing to John. But not me. It's one more "contrast" between where I've been and where I am.

I wasn't a cheerleader and I never danced with the captain of the football team. I didn't get to dance much at all; literally or figuratively. But I think that's probably one of the reasons I feel like Cinderella.

It feels incredibly unbelievable to me that I am living this life, that I have all these great friends, that I have such an amazing husband. It always will. And the reason the little things are such sweet big things for me has everything to do with what I never had in the past.

So how could I ever regret what I didn't have when it has resulted in what I DO have?
The answer is: I can't.

Thursday, October 7, 2010

First Day of Treatment for Marian!



This is my beautiful mother-in-law during her first day of treatment with Rituxan and CAL-101. You would never know she is 78. She doesn't even color her hair. She has only a few gray strands here and there. A patient ten years younger thought Marian was younger than she was. She was shocked when I told her Marian's age.

Today went so smoothly. The first couple of hours Marian snoozed as a result of the Benadryl and Tylenol given to help prevent possible reactions. And some of you may remember John's reaction immediiately following his first Rituxan infusion. He sailed through the entire day and then lost consciousness in the elevator as we were leaving (fell and hit his head on the metal threshold just as the doors opened). Strangers helped me get him from the elevator back into the office and he passed out a second time while sitting in a chair. A nurse thought he was having a seizure and I thought I was losing him. (He made breathing noises that sounded like he was struggling for air.) It was very scary.

Dr. Flinn and a nurse got him into a wheelchair and we literally sprinted down the hospital corridors to the Emergency Room. It turned out that he had experienced Tumor Lysis Syndrome, which can be very serious. But he was fine. And he was released after all the tests confirmed he had just had a very sudden drop in blood pressure as a result of all the malignant lymphocytes being "dumped" from his blood - through his one kidney - and processed out of the body after being "killed" by the Rituxan. His white count had dropped 40K in four hours. The body was not designed to "flush out" forty thousand lymphocytes in a few hours.

This is not a common reaction. Most reactions are more benign, like fever and chills or just feeling weird, lightheaded, etc. John's reaction was unusual and had never happened before to any patient of Dr. Flinn's. So I wasn't expecting this to happen to Marian, but she and John are so much alike in so many ways. They both have a low-normal blood pressure. And they both have only one kidney. So I couldn't help thinking about it going into this first day.

However, the day was as uneventful as it could possibly have been. She got the whole infusion without even a mild reaction. If she had reacted, they would have had to stop the infusion to treat the reaction, then slow down the rate of infusion. That's why we could have been there for up to ten hours. But since that never happened, we were done by 3:30.

We got the results of last week's testing this morning before treatment began. Marian does have enlarged lymph nodes in the abdomen, pelvic and cervical areas. None are as large as John's were, but there are several of significant size. And we found out the results of her bone marrow biopsy show 90% CLL involvement in the marrow. That's not good news and explains why her counts have been so consistently moving in the wrong direction. But it is confirmation that we made the right decision to go ahead with treatment now rather than try to wait longer. I'm not sure what all of the ramifications are of the bone marrow infiltration. I plan to read up on that tonight. John had 30% bone marrow infiltration prior to FCR and 20% after. If Marian's blood and lymph nodes return to normal after treatment, she will have another bone marrow biopsy to determine if she has achieved a complete remission.

As all CLL patients know, deciding when to proceed to treatment is a hard decision. You really don't know  with absolute certainty that you couldn't possibly wait a little longer or vice versa. It's also possible to wait too long and let the disease get out of control. And every patient is different. We knew Marian was slightly anemic and her platelets have been declining gradually ever since diagnosis. She had reached the threshold for treatment. Dr. Flinn said there wasn't anything to be gained from waiting and she did need treatment, but it wasn't so urgent a situation that she couldn't put it off another month or so if she absolutely needed to. She decided that she wanted to get it over with and I agreed that was the right decision. But I still had the nagging question in the back of my mind ... Could she have waited a little longer?

When I got my copies of the bone marrow biopsy and saw 90% marrow involvement, I knew we had not rushed into treatment prematurely. It was definitely the right decision. That gives me peace of mind.

Based on today, I expect Marian to sail through all of this in classic Marian Howerton Kibler style. She is an amazingly resilient lady. She is positive and she is gracious ... in every way.

On the way home, Marian put her hand on my arm and said, "Thank you so much for everything you do for me. I don't feel like I thank you enough." I told her, "Yes, you do. You thank me all the time. I feel very appreciated - not only by you, but by the whole family." And I do. It is truly a joy and a privilege to be in a caregiving role where there is so much love and appreciation.

One day I will probably wind up needing a caregiver myself (if I live long enough). I hope when that time comes that I will be as thankful, gracious and low-maintenance as my lovely mother-in-law, Marian, is.

Tuesday, October 5, 2010

Poppy & Ally Chat About the Titans!

A friend of mine created this video. It's his "interpretation" of a conversation he had with his fifteen-month-old granddaughter and it's hilarious.

Friday, October 1, 2010

"Is it five o'clock somewhere?"

This is Marian, my mother-in-law. I took this picture as we were finishing dinner tonight. (Notice her cleaned plate! It was an amazing meal, if I do say so myself.)

I know that a lot of people have challenging relationships with their mothers-in-law. Hence, all the jokes. But I am blessed. I adore my mother-in-law. I really don't know anyone who doesn't love Marian. She's such a sweetheart.

We have been spending a lot of time together this week. In addition to doctor's appointments and pre-treatment testing, we've shopped and lunched. (I can't keep up with her when it comes to shopping. I am always the one to say, "I'm tired of shopping. Can we go eat now?")

She looks forward to her glass of wine before dinner. And on the way home every afternoon, she asks, "Is it five o'clock somewhere?" She's fun. And I have a feeling she always will be ... at any age!

She'll be 78 in a couple of weeks. She has raised five kids. She has lost two husbands to cancer. She has lost an 18-year-old granddaughter (Brittany) to asthma. She has a son (John) and a daughter (Lillian) battling cancer. And she is about to begin treatment for her own cancer next week. But you would never know she had a care in the world. She lives life to the fullest, enjoys every day, and never loses her sense of humor.

While still woozy from the Ativan (following her bone marrow biopsy), she looked over at the medical tray, saw red, and asked, "Is that my blood?" The nurse practitioner told her it was actually part of the bone marrow aspirate. And she said, "Well, that can't be mine because I'm from Kentucky and I bleed blue." She and John always bring laughter to the cancer clinic.

She's been telling me, "I'm so glad John has you..." for the last seven years. And lately she has been telling me, "I'm so glad I have you." I'm thankful she feels that way. I told her yesterday, "I would take care of you because of how much I love John even if I wasn't crazy about you. But I AM crazy about you and there's nothing I wouldn't do for you." And I meant it. I have a wonderful mother-in-law who always makes me feel loved and valued. I appreciate her.

I am also eternally indebted to her for bringing John into the world. And I frequently thank her for that.

As we were driving home from Publix today, I was thinking (as I often do) about all the ways God has blessed me through John. Obviously, John himself is such a blessing. But as a result of God transplanting me into John's life, I have been blessed with such a wealth of cherished family and friends. It's almost surreal at times. I cannot imagine any other life but the one I have. I cannot imagine what my life would have looked like had I not met John Howerton.

And one of my many blessings is my sweet mother-in-law, Marian.
It's a privilege to be her daughter-in-law.