Wednesday, September 30, 2009

Doing for others...

I am attending a Beth Moore Bible Study on the book of Esther. There have been so many great quotes already (from Beth). But this morning, a friend in the study shared something that was spoken to her husband by an older gentleman years ago that I loved. I told her, "That's going to be on my blog today."

The mentor said, "I'm going to tell you something and I want you to remember it: What you do for others will be remembered. What you do for yourself will get buried with you."

I thought it was worth sharing.

Tuesday, September 29, 2009

Book Release:

Publication Update

Both Wrong; Both Loved

Taken from "The Prodigal God" by Tim Keller:

Jesus does not divide the world into the moral "good guys" and the immoral "bad guys." He shows us that everyone is dedicated to a project of self-salvation, to using God and others in order to get power and control for themselves. We are just going about it in different ways. Even though both sons are wrong, however, the father cares for them and invites them both back into his love and feast.

This means that Jesus' message, which is "the gospel," is a completely different spirituality. The gospel of Jesus is not religion or irreligion, morality or immorality, moralism or relativism, conservatism or liberalism. Nor is it something halfway along a spectrum between two poles--it is something else altogether.

The gospel is distinct from the other two approaches: In its view, everyone is wrong, everyone is loved, and everyone is called to recognize this and change. By contrast, elder brothers divide the world in two: "The good people (like us) are in and the bad people, who are the real problem with the world, are out." Younger brothers, even if they don't believe in God at all, do the same thing, saying: "No, the open-minded and tolerant people are in and the bigoted, narrow-minded people, who are the real problem with the world, are out."

But Jesus says: "The humble are in and the proud are out" (see Luke 18:14). The people who confess they aren't particularly good or open-minded are moving toward God, because the prerequisite for receiving the grace of God is to know you need it. The people who think they are just fine, thank you, are moving away from God. "The Lord . . . cares for the humble, but he keeps his distance from the proud" (Psalm 138:6--New Living Translation).

When a newspaper posed the question, "What's Wrong with the World?" the Catholic thinker G. K. Chesterton reputedly wrote a brief letter in response: "Dear Sirs: I am. Sincerely Yours, G. K. Chesterton." That is the attitude of someone who has grasped the message of Jesus.

My prayer is that I will constantly keep the reality--that I am not particularly good and I am in desperate need of God's grace--always in the forefront of my mind.

Friday, September 25, 2009

Being the Caregiver

The role of a caregiver involves many things. Some of the responsibilities I have assigned to myself include:

Researcher, fact-gatherer, sponge (for absorbing all information related to the CLL journey of my spouse), patient advocate (protecting my husband from unnecessary exposure to radiation, contrast, possible wrong treatment choices, and any medical personnel who might forget that my precious patient has only one precious kidney, which has to be protected from unnecessary harm), treatment companion (not just for emotional support but for facilitating constant hydration by keeping that water bottle full), interpreter (sometimes translating information that I understand better because of all my reading), supporter, encourager, consoler, pray-er. And the "roles" I am trying most to refrain from: Worrier, stresser, projecter. (These activities help no one.)

In my last blog post I addressed the realization of my fearfulness. At that moment, I was thinking primarily about my fear of other people and my fear of being a hypocrite. But as I reread that post this morning, I thought about some of my other fears. Will the treatment work? Is John's CLL going to be the aggressive kind? Will he be resistant to treatment? Will he ever feel good again? Will he tolerate the treatment well? Will he get serious infections? What if he doesn't achieve a complete remission? What if he comes out of remission too soon? And I don't even need to spell out the rest of my fears and anxieties. I'm sure you can imagine the scenarios I have to battle in my mind sometimes.

For the most part, I have gotten better at living in the present and not projecting into future uncertainty. But I would be lying if I didn't admit that there are days I feel overwhelmed with anxiety. Up until the beginning of treatment, my anxiety was about the decision to do chemo now and the ramifications for John of that decision. Once the decision was made, that anxiety went away. I did see the overwhelming evidence of the need for this treatment. I was surprised at how positive and upbeat I felt going into this new territory. I felt certain that John was going to respond well and tolerate the side effects well. I didn't feel emotional that whole week.

Then the weekend of round one, John was really sick and I went from feeling strong to feeling weak and completely helpless. It's hard to watch someone you love suffer and not be able to do a thing to end it. We got through that weekend and started seeing some real improvement in John's lymph nodes. I had not expected them to go down that fast and it was exciting. I was feeling really good about the treatment at that point, and so was John. That lasted one or two days, and then his neck started getting bigger again. That felt like a punch to the gut. What does this mean? It was not only discouraging to me, I could tell it was discouraging to John. He is so resilient and upbeat, but he looked at me and said, "What if this doesn't work? I wonder what I'll do then." I reminded him that Dr. Flinn said we would consider doing a stem cell transplant if he came out of remission too soon. So I assumed that would be the next step if treatment failed. And then I said, "But I think we may be reading too much into this. There is a reason there are six rounds of treatment. This may not be a bad sign at all. It might be very common."

We saw Dr. Flinn Tuesday and asked him about the nodes. He said that obviously he would prefer to see them go down and stay down, but some people experience "waxing and waning" of their lymph nodes in the early rounds of treatment. It's not that uncommon. I felt a little bit better, but not much.

Last night I thought his nodes looked like they had gone down a little bit and I felt excited (again). I think John was too tired and perhaps a bit reluctant to get excited. Which I completely understand. But I'm thankful for any encouraging sign.

Living with cancer (which is treatable but presently incurable) is at times an emotional roller coaster. Probably more so for someone like me who feels every emotion so deeply and intensely. One of my online CLL friends made the observation that I have really gotten into John's skin and am going through all of this right along with him. It's true. The weekend following his first treatment, when he was so sick, I literally had sympathy nausea a couple of times. I just felt these waves of nausea come over me that I knew had no origin other than compassion. I never mentioned it to John because I didn't want to put the focus on me, but I knew it was emotionally induced.

I had one of those nights last night when I woke up and never went back to sleep. I prayed for everyone I could think of, including John of course. He was coughing so hard from his reflux that he wasn't sleeping either. This morning he said that maybe he would just have to stop eating dinner. I suggested that maybe he could leave work at 5:00 so he could eat dinner earlier. And he of course replied, "I can't do that."

My sweet son called me yesterday to check on me. I've been pretty fragile this week and my voice has cracked several times on the phone. I told him that I was feeling much better yesterday than I had been feeling previously. I said that since I'm fragile one day and fine the next, some of my fragile days must be the result of the physical changes associated with my age. I have been blaming my hormones for my emotions for many years. Maybe it's just being a woman. And then he reminded me, "You have a lot going on." Yeah, maybe I need to cut myself some slack for being emotional. I was glad he said that. I tend to be very hard on myself for my emotions. I feel like I shouldn't be the way I am. I wish I could be more stoic sometimes. It's not that I admire stoicism. But it seems like it would be easier than feeling everything so intensely (the way I always have).

Despite the (at times) raging emotions and my very real stresses, I don't feel sorry for myself at all. I am constantly aware of my blessings and I recognize I have not scratched the surface of some people's challenges and/or suffering. I feel God's presence. I know He hears our prayers. I know He loves us and His grace will be enough for us in anything we face. I recognize the opportunity to grow in the midst of difficulties and that God has increased my compassion for others BY allowing me to experience difficulty, challenges and even suffering. I don't feel entitled to a perfect, trouble free life. But I'm human. There are ups and down, good days and bad days, tears.

Today I am really tired from not sleeping, but I feel fine. Whenever I wake up in the middle of the night, my thoughts always go to how blessed I am. I have thanked God for the blessing of John and our happy marriage many, many times in the middle of the night. I am so thankful that I am his wife, his patient advocate and his caregiver for this journey. Nobody could love him more or care for him better. That I know. I would rather that he didn't have to go on this journey. But since he does, I'm so glad God allowed me to be by his side. If God had sat me down and given me all the details of our future together, I would have chosen these details because they include John. I'm so glad God chose me to go through this with him. I know there are many other caregivers who feel exactly the same way.

Wednesday, September 23, 2009

A timely quote from Beth Moore...

"You cannot amputate your history from your destiny." (Beth Moore)

I started the study on Esther with some friends this morning. I felt like God was nudging me to go. I haven't participated in this particular group before, but I do know a few of the women attending and one of those friends had invited me to come. As usual, I woke up this morning feeling very lethargic and unmotivated to do anything that required leaving my house. I wake up early and I get up early, but I am not a morning person and I don't really come alive until at least noon. My most productive hours are usually after noon. I kept looking at the clock and trying to decide, basically, between doing something productive and being lazy. I knew I would be glad I went. So I went. And I am indeed so glad I did.

The group leader asked us what we hoped to get out of this particular study. I shared that I need Esther's courage; God given courage.

I don't need the kind of courage that I can muster up inside myself. That kind of courage is the kind you have one day and you may not have the next. That is the kind of courage that depends on my emotions (which regularly fail me). No, I need courage that only God can give me. I need the kind of courage that will enable me to be strong and faithful when hurtful words, condemnation and rejection stare me in the face. You can't muster that kind of courage within yourself. God HAS to give it to you. But God CAN give it to you and He HAS given it to me on many occasions. The only times I don't have it are the times I let people be big and God be small.

I'm learning more and more just what a fearful person I am. I am not allowing my fears to paralyze me. I know what God has asked me to do and I have felt His assistance and confirmation all year long. But I have not been able to fully surrender my fears and anxieties to Him. I find myself worrying obsessively about the reactions of people I still desperately want to love me and know my heart. I give those people (and relationships) to God over and over; then I pick them back up and worry some more over things I cannot control.

This week I have focused on whether or not I am a hypocrite if I have not remembered something hurtful I did to someone and failed to include a glaring fault of my own in the book. I go back over some chapters endlessly, stressing out about this and wondering if there are perhaps any terrible things I've said or done that I can't remember or haven't repented for. Although I can't find a spot in the book where I've portrayed myself as faultless (I included details about my own life that are far from flattering because I wanted to have integrity and be real), I have still carried this fear of forgetting my own sins against others.

I know that I can only write from my own perspective and memories, but I think my worst fear in life is being a hypocrite or a fraud. I never insisted that my son make his bed while growing up because I didn't always make mine and I didn't want to expect something of him that I didn't expect of myself. I have seen a lot of hypocrisy in my life (as we all have) and for as long as I can remember, that was something I never wanted to tolerate in myself consciously. (However, I know that I can be hypocritical and not even recognize it unless and until God reveals it to me.) I have let this fear get the best of my emotions for days.

Because of all the reading and studying I have done, I recognize this fear as self-absorption. Although I could be deceived into thinking it's noble and honorable because it's rooted in a desire not to be something like a hypocrite, it's still self-absorption and it involves worry over how I'm going to appear to others. And God does not want me to find my acceptance and validation in other people. He knows my heart. He knows my failures. He has accepted me, forgiven me and loved me in spite of my long list of imperfections.

There is freedom from worry and fear if I will put my complete faith and trust in God and be willing to have others think whatever they will about me. I know this. I have even experienced it on occasion. But at this stage of my life, that freedom eludes me; it exists in windows of time and then I seem to return to my fear, willingly abandoning the freedom I have been given in Christ. It's that freedom that enables me to do hard things out of deep conviction, allowing me to accept personal suffering or unpleasant repercussions.

I am still carrying emotional baggage that is rooted in my past. And sometimes I ask myself why I can't stop reflecting on my history.

In this morning's video lecture, Beth Moore told her audience that even when our histories are painful and we would like to distance ourselves or put them out of our minds, God doesn't want us to do that. It's not that He wants us to live in the past or be consumed with the past, but our history is intertwined with our destiny and our calling. Whatever He has called us to has a correlation to what He has already delivered us from. Our captivity and our redemption share a common root. Her words were compelling and timely for me. I have wanted to do this study before, but I think God's timing for me is now. I already knew that God had preserved many memories and experiences for a specific purpose. He also gave me an ability to express myself and put my thoughts down in writing. I didn't work to acquire that. God gave me that gift and He gave it to me for a specific purpose. I believe that purpose has been fifty years in the making. But even though I may sometimes be surprised by where I find myself in life or by my circumstances, God is not surprised. He has known my future since before my conception.

When Beth Moore put this quote on the screen ("You cannot amputate your history from your destiny."), I knew God was speaking to me. Whatever my role is in His plan, I realize that it relates specifically to my personal history and my personal redemption. I keep being reminded of Revelation 12:11, where it says:

11 They triumphed over him (their accuser)
by the blood of the Lamb
and by the word of their testimony;
they did not love their lives so much
as to shrink from death.

Death can be many things. There is physical death, but there is also emotional death that occurs when you face being dead to someone you love (though you are very much alive). I don't know who I have become dead to or may yet become dead to. But I am not to love my life or any part of my life so much as to shrink from that death. It is by the blood of the Lamb and the word of my testimony that I will triumph over my accuser. My prayer is that God will give me the same courage He gave to Esther in doing whatever He requires of me in this life and that the preservation of my life and my personal comfort would never prevent me from doing whatever He asks of me.

Sunday, September 20, 2009

The Prodigal God

I started reading a book by Tim Keller yesterday;
The Prodigal God
Recovering the Heart of the Christian Faith

If you're wondering about the title, Keller explains in the introduction that the definition of prodigal is not "wayward" but, according to Merriam-Webster's Collegiate Dictionary, "recklessly spendthrift." It means "to spend until you have nothing left."

"This term is therefore as appropriate for describing the father in the story as his younger son. The father's welcome to the repentant son was literally reckless, because he refused to 'reckon' or count his sin against him or demand repayment. This response offended the elder son and most likely the local community...Jesus is showing us the God of Great Expenditure, who is nothing if not prodigal toward us, his children. God's reckless grace is our greatest hope, a life-changing experience, and the subject of this book."

As most of my friends know, I love listening to Keller's sermons. I have learned so much about the Gospel by listening to him illuminate how the Bible is the story of Jesus (and our need of Him) from beginning to end. For a couple of years (at least) I never listened to anything while driving in the car except Tim Keller's sermons. Therefore, I have heard some of the "lessons" of this book. But these lessons are always fresh and meaningful.

This book explores the parable of the two lost sons. Keller emphasizes that both sons are equally lost and even though we have overly focused on the sins of the younger brother, Jesus aimed this parable at the elder-brother-Pharisees when He told it. He breaks down the parable in such a way that the reader understands that there is more than one way to be lost and there is only one way to be saved. I don't think any of us are 100% older or younger brothers spiritually. I think we all have a propensity to be both. Some of us may have a greater percentage of one than the other, but I know that I have been both at different times in my life. I highly recommend this book. It's short and a quick read, but packed with great, thought provoking Gospel truths.

There was a passage I read this morning that I just had to post. I can't imagine this not speaking to the heart of every reader. We are ALL guilty.

As a means of illustrating for the reader our elder brother mindset, he tells this story:

Elisabeth Elliot recounts an apocryphal story (not in the Bible!) about Jesus that conveys the difference between a results-oriented selfishness and a faithfulness born of love.

One day Jesus said to his disciples: "I'd like you to carry a stone for Me." He didn't give any explanation. So the disciples looked around for a stone to carry, and Peter, being the practical sort, sought out the smallest stone he could possibly find. After all, Jesus didn't give any regulations for weight and size! So he put it in his pocket. Jesus then said: "Follow Me." He led them on a journey. About noontime Jesus had everyone sit down. He waved his hands and all the stones turned to bread. He said, "Now it's time for lunch." In a few seconds, Peter's lunch was over. When lunch was done Jesus told them to stand up. He said again, "I'd like you to carry a stone for Me." This time Peter said, "Aha! Now I get it!" So he looked around and saw a small boulder. He hoisted it on his back and it was painful, it made him stagger. But he said, "I can't wait for supper." Jesus then said: "Follow Me." He led them on a journey, with Peter barely being able to keep up. Around supper time Jesus led them to the side of a river. He said, "Now everyone throw your stones into the water." They did. Then he said, "Follow Me," and began to walk. Peter and the others looked at him dumbfounded. Jesus sighed and said, "Don't you remember what I asked you to do? Who were you carrying the stone for?

After telling this story, Keller writes:

"Like Peter, elder brothers expect their goodness to pay off, and if it doesn't, there is confusion and rage. If you think goodness and decency is the way to merit a good life from God, you will be eaten up with anger, since life never goes as we wish. You will always feel that you are owed more than you are getting. You will always see someone doing better than you in some aspect of life and will ask, 'Why this person and not me? After all I've done!' This resentment is your own fault. It is caused not by the prosperity of the other person, but by your own effort to control life through your performance. The strong undertow of anger this causes may not turn you into a murderer...but it will constantly cause you to lose your footing in various ways."

Quotes from the Internet

"If with God is the safest place to be at the moment of your greatest failure, then, you understand the cross."
~ Wayne Jacobson (Thank you, Dee Dee)

"Obedience (to God) with the motive of personal glory is disobedience."
~ Brent Kercheville (Thank you, Susan)

And people say Facebook is a waste of time. I don't think so when you are starting your day reading quotes like these!

Yes, it's true that much time can be wasted on the Internet. I'm living proof of that and so are many others. But many blessings also come from the Internet. For instance, because of the message board I have participated in (for ex members of the cult I grew up in), I have made some very special friends I otherwise would not have known. Because of sharing my blog and book websites on that message board, I have had the joy of reconnecting with some friends from my childhood that I haven't heard from in years. Let me share just two really neat examples.

Example number one: Several weeks ago, someone sent me a friend request on Facebook. She was an anonymous poster on the message board but knew my name (I was not anonymous). She identified herself and explained how she knew me and I accepted her request. I then went to her profile page and looked at her pictures. I saw pictures of her kids in the same town I live in and thought, "Is it possible she's right here close by?" Well, as it turned out, not only does she live close by, she goes to the same church I attend. But we go on Saturday night and she goes on Sunday morning. Yesterday I met her at McDonald's so we could talk while the kids played on the playground. And I feel like I have made a new "old" friend. Even though we just met face to face for the first time, I feel like I have known her forever. The bond was instantaneous. It's because of a shared history that few understand or relate to. Hers was more traumatic than mine. But we could relate to one another quite easily and there were many similarities. She grew up in another state and in a different local church, but was a part of the same group I came out of and had a very similar background, similar baggage, similar memories. Somehow, she and I (through circumstances of life) wound up living close enough to each other to be attending the very same church. But it was through the Internet that we found each other. I know this person will be a friend for the rest of our lives. After spending two hours with her, I love her. I'm so thankful for this friendship.

Example number two: I received a pre-order of my book yesterday from a name I remembered from childhood. I haven't seen or talked to this person in over twenty years. But I instantly knew who she was. And since I receive an email address with every book order, I responded to thank her and ask if she was the person I thought she was. She wrote me a long email and told me all about her life. She has been happily married for twenty-two years to the man Brother Mears was opposed to her marrying. She left the church because it was not acceptable to marry outside the group. But she now knows she made the right decision not to choose the church over her husband. She wants to keep in touch and so do I.

These are just two examples. There are others. Some of those you will read about in my book. As soon as the cover's done, I will submit it for publishing. I added some text (suggested by my editor) to the back cover and my designer is having to rework it a bit for those changes. I hope and pray the book will be submitted this week. I hate to keep delaying the release for those who have already purchased their books.

Saturday, September 19, 2009


I don't take a lot of tests on Facebook. But some I can't resist. "Which book of the Bible are you?" caught my attention and I couldn't resist. I enjoyed taking the quiz. I liked the questions. All of my answers were clear cut. There was one obvious answer for me in each case. I had no idea what it would say about me. But the result was encouragement I needed today. If this is not yet who I am, it is who I aspire to be.

This was my result:

"Which book of the Bible are you?"


Passionate about justice, you can't be at peace until you've done your best to help the oppressed. You are not afraid to speak truth to power, though you've paid the price for doing so. You will sacrifice for the good of others; you're a true servant-leader. You do not rely on your own power. You don't have to. You've seen Providence step in to change what looked like disaster into victory. At the same time, you've suffered and been lonely as a result of your refusal to go along with the crowd. You know that the great plan is beyond our limited comprehension, and what looks like a loss to you may eventually turn out to be a win.

If you're on FB and happen to take this quiz, I would love to know your result!

Friday, September 18, 2009

The Latest...

I'm trying to think of subject lines other than "update" and my brain doesn't function at its peak in the morning.

Lillian, my sister-in-law, is still doing chemo and radiation. She seems to be holding up well. But I know it's a long, tough, hard fought battle. I love you, Lillian. Hang in there!

John is continuing to rebound from Week One of FCR plus Lumiliximab. I told my friends on the CLL Christian Friends forum that I am sometimes quite impressed with myself the way these drug names just roll off my tongue and that I can even spell them. I'm talking about drug names like Fludarabine, Cyclophosphamide, Lumiliximab, Rituximab (or Rituxan). I also know the difference between a chemo agent and a monoclonal antibody. And that's impressive because a lot of the medical personnel don't seem to understand the difference. In John's case, he is receiving two chemotherapy agents (F & C) and two monoclonal antibodies (R & L).

I used to think of chemotherapy as just chemotherapy. I'm learning that all chemos are not alike, just as all cancer is not alike and all Leukemia is not alike. Before my association with CLL, I had no idea how many different forms of Leukemia there were. So now when a public person (like Mary Travers of Peter, Paul & Mary) dies from "complications of Leukemia," I immediately wonder what kind of Leukemia she had and what kind of treatment she was receiving that may have contributed to her complications.

Yesterday was a tough day for me. I had the blues all day long. I'm not really sure why. Maybe it was the weather. Although weather doesn't usually affect me emotionally, so probably not. But it's the first thing we like to blame. I think it's probably more of a delayed reaction to stress. I felt better when John got home. Hugs can do wonders.

I feel better this morning. I get to spend time with Rebecca and the boys today and I'm looking forward to that.

The book is finished. The cover is almost finished. I had a few last minute requests of my designer for the back cover. I wrote a little blip 'about the author' and supplied her with a quote, as well as what portion of Charlie's foreword I wanted to quote on the back. The cover was essentially done prior to my additions. But I don't expect those to take long. It's just a matter of adding some text and laying it out. Once I get the pdf of the cover, I'm ready to submit the whole thing to the online publisher. They tell me it's about two weeks from that point to having a published book.

As that day approaches, I have so many mixed emotions. I feel good about the book and the book's message. I have printed out the manuscript and I have read it many times; some chapters more than others. There's nothing in there - not even a sentence at this point - that I feel uncomfortable with. I have been very open and truthful, but I don't think I have been unkind in my portrayal of anyone. The book tells my story, my emotions, my insecurities, my thoughts, my opinions and my struggles. I also tell the stories of several friends. Their stories are like threads running through the fabric of my own life.

My hope and prayer is that former friends and family members I am estranged from will read the book and gain understanding. I pray that they will see and feel my heart on the pages of this book (as well as the hearts of others who have left). I will always have hope that there can be healing and restoration to broken relationships; new clarity for long held misunderstandings and misjudgments. As John and I were walking one evening a couple of weeks ago, I asked him if he thought there was a chance that when certain people read the book, they might see the truth and feel my heart, that there might be healing; or if he thought they would just be more ticked off at me for being so open and honest. He said, "There's always a chance, but I think it's more likely that they'll just be more ticked off at you. Having hope is good, just don't get your hopes up too high."

I think these hopes and the unlikely realization of them have a lot to do with the melancholy I felt all day yesterday. While I am very excited about being so close to having my book published and I believe more than ever in the importance of its message, I feel a heaviness for those who won't understand why I had to write it and will feel persecuted by it. I don't like to cause pain or discomfort for others. This book won't be comfortable for all to read. But every word is the truth and it's the life I have lived side by side with others.

I pray that God will use the book to open people's eyes to the truth and that real healing will begin. I pray that lost relationships will be restored. I pray that there might one day be healing in my family.

Tuesday, September 15, 2009

My husband is back

I am so happy to report that John is definitely rebounding from the first week of chemo. He is still dragging and very, very tired. He is trying not to fall asleep (if he lets himself go to sleep this early, he will never sleep through the night). But he is smiling and teasing me again. It's so good to have him back!

Well, I guess we know what to expect next time. And I will know better how to be prepared. One thing is certain; I will make sure we are never without anti-nausea meds the week of treatment!

The nodes are really responding. They are probably 1/3 the size they were at this time last week. I don't even like to think about how low some of his blood counts may be right now. But we will find out next Tuesday when we see Dr. Flinn and blood is drawn. Dr. Flinn predicted we would see a change in the lymph nodes right away and I'm so thankful he was right.

One down, five to go.

I want you all to know how much your personal messages and comments here on my blog have meant to me. I am overwhelmed by everyone's love, concern, support, encouraging words and prayers, and offers to be anywhere and do anything if needed at any time. I told Karen today at lunch that even though there are times when I still battle my fears and emotions, I absolutely NEVER feel alone in this. We are surrounded and enveloped by so much love and support. I know I keep saying it over and over, but I am so very thankful. I know there are people in this world who really do feel alone and have no one to turn to in difficult times. I don't take for granted how blessed I am with loving, concerned friends who would do absolutely anything to help get us through this.

I thank you from the bottom of my heart for your friendship. You may not be able to be right here with us in every tough moment, but we feel your emotional presence and your prayers all the time.

Monday, September 14, 2009

Glad this weekend is over...

I don't have time to write much this morning, but wanted to just post a short update. Although I would definitely not go as far as to say John is feeling good, he is some better today. He has been on the anti-nausea meds for over 24 hours now and they have taken the edge off his nausea. I also convinced him to take an Ativan before bed so he would sleep. He took it easy this morning and although he did insist on going to work, he left a little later than he normally would. I'm hopeful he will not try to be there for a full day.

The best thing I have to report is that I could tell a difference in his lymph nodes this morning. They are definitely starting to go down. Praise God!

I hate that he has to go through this from now through February! But I'm thankful that we are seeing some quick results. Please pray that they are not just quick, but long lasting. The scariest thought for me is that his remission won't be a long one. I'm trying not to even think about that. So pray for me that I won't project. Next to watching my husband suffer, the fear of the unknown is definitely the hardest part of this.

I have felt your prayers all weekend. I'm so thankful for all of my caring friends and family members.

Sunday, September 13, 2009

Thankful for 24-hour Walgreen's!

The Bonine made John drowsy, but it didn't relieve the nausea. So, early this morning I talked to the nurse practitioner again and she called in a prescription for anti-nausea meds. As I was sitting in the drive-thru of our 24 hour Walgreen Pharmacy, I thought about all of our modern conveniences. How wonderful it is that I can make a phone call at 6:30 AM and within thirty minutes, without even getting out of my car, I can have the medicine John needs to relieve his symptoms. I always think about the people in generations before me who were not blessed with these conveniences we often take completely for granted.

I hate to see anyone suffer. It doesn't even have to be someone I love, but of course seeing someone you really love suffering is even worse. My husband is not a baby when it comes to pain, sickness and discomfort. He never complains. He takes everything in stride. But this morning he said to me, "I thought I was tougher than this. I guess I'm not." He didn't expect to feel this bad.

John is sensitive to medications. He doesn't like to take pain pills because they make him feel sick. So he just endures pain. Last night I was doing research for his symptoms and read that patients who are normally sensitive to or made sick by other medications are more likely to suffer sickness and nausea from chemotherapy. Well, there you have it. Wish I had read that earlier and thought to ask for anti-nausea medication to have on hand. I will make sure we always have it from now on.

The medicine for his nausea also causes drowsiness. I'm hoping he can just get a lot of sleep today. Because I have done so much reading and researching ever since he was diagnosed, I had a pretty good idea that he was going to feel worse before he felt better. But I didn't expect it after the first round. From everything I've heard and read, the side effects are cumulative. The more treatments you take, the worse you feel. He was advised that he probably wouldn't feel that bad after the first round, but by the third round he would be feeling the cumulative effect.

I hope that the one thing he takes away from this weekend is how important it is for him to rest and take care of himself while going through this treatment regimen. Part of me wonders if he was unwise to go to the dealership yesterday for 6-7 hours. Maybe he would have been just as sick if he had stayed home and rested. It's hard to say for sure. I want to be the world's best wife and caregiver, but I don't want to be the police. I know I have to let him make his own choices and if it makes him feel better mentally to go check on things, I don't want to fuss at him. I'm hoping he will take the entire weekend off next time and just rest, but I seriously doubt it.

Seeing him suffer this nausea, calling the doctor's answering service and especially writing down the time I gave him his medicine brought back memories from my mom's cancer battle. I always wrote things down--especially doses of medicine--so I wouldn't forget. And I instinctively did the same thing this morning. I also programmed the number of the 24 hour Walgreen's into my cell phone for any future emergency.

As I drove to the pharmacy this morning, I was thinking about the first few years of our marriage and how this is the last thing we ever would have expected. John has always been the picture of health. Low blood pressure, low cholesterol, regular exerciser, healthy eater, stays at his ideal weight, doesn't smoke. But before our fourth wedding anniversary, he received this diagnosis. And as our sixth anniversary approaches, he is undergoing chemotherapy.

Don't wait until you receive a diagnosis to appreciate every day as a gift from God.

A good friend of ours lost his brother to lung cancer yesterday. He was just recently diagnosed and went very quickly. I don't say this to be morose. I'm not feeling morose or even depressed. I'm just living in the reality that life--or good health--can end abruptly. If you're strong and healthy today, savor that and thank God for it daily.

I just finished reading a book called Crazy Love. In this book, the author challenges our lukewarmness toward God. Chapter Two is entitled "You might not finish this chapter" and it begins like this...

You could die before you finish reading this chapter. I could die while you're reading it. Today. At any moment.

But it's easy to think about today as just another day. An average day where you go about life concerned with your to-do list, preoccupied by appointments, focused on family, thinking about your desires and needs.

On the average day, we live caught up in ourselves. On the average day, we don't consider God very much. On the average day, we forget that our life truly is a vapor.

But there is nothing normal about today. Just think about everything that must function properly just for you to survive. For example, your kidneys. The only people who really think about their kidneys are people whose kidneys don't work correctly. The majority of us take for granted our kidneys, liver, lungs, and other internal organs that we're dependent upon to continue living.

What about driving down the road at sixty-five miles per hour, only a few feet away from cars going the opposite direction at the same speed? Someone would only have to jerk his or her arm and you would be dead. I don't think that's morbid; I think it's reality.

It's crazy that we think today is just a normal day to do whatever we want with. To those of us who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money," James writes, "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes" (4:13-14).

When you think about it, that's a little disconcerting. But even after reading those verses, do you really believe you could vanish at any minute? That perhaps today you will die? Or do you instead feel somehow invincible?

This chapter is so good, it's hard to choose highlights. I particularly like what he wrote about stress and worry:

Worry implies that we don't quite trust that God is big enough, powerful enough, or loving enough to take care of what's happening in our lives.

Stress says that the things we are involved in are important enough to merit our impatience, our lack of grace toward others, or our tight grip of control.

Basically, those two behaviors communicate that it's okay to sin and not trust God because the stuff in my life is somehow exceptional. Both worry and stress reek of arrogance. They declare our tendency to forget that we've been forgiven, that our lives here are brief, that we are headed to a place where we won't be lonely, afraid, or hurt ever again, and that in the context of God's strength, our problems are small, indeed.

Chan goes on to say a little further on...

Maybe life's pretty good for you right now; God has given you this good stuff so that you can show the world a person who enjoys blessings, but who is still totally obsessed with God.

Or maybe life is tough right now, and everything feels like a struggle. God has allowed hard things in your life so you can show the world that your God is great and that knowing Him brings peace and joy, even when life is hard...To be brutally honest, it doesn't really matter what place you find yourself in right now...The point of your life is to point to Him. Whatever you are doing, God wants to be glorified...

If life were stable, I'd never need God's help. Since it's not, I reach out for Him regularly. I am thankful for the unknowns and that I don't have control, because it makes me run to God...

Just to put into perspective the brevity of our lives:

Throughout time, somewhere between forty-five billion and one hundred twenty-five billion people have lived on this earth. That's 125,000,000,000. In about fifty years (give or take a couple of decades), no one will remember you. Everyone you know will be dead. Certainly no one will care what job you had, what car you drove, what school you attended, or what clothes you wore. This can be terrifying or reassuring, or maybe a mix of both...

Friends, we need to stop living selfish lives, forgetful of our God. Our lives here are short, often unexpectedly so, and we can all stand to be reminded of it from time to time. That's why I wrote this chapter, to help us remember that in the movie of life, nothing matters except our King and God.

Don't let yourself forget. Soak it in and keep remembering that it is true. He is everything.

This is one of the things I love about writing on my blog. When I begin a post, I never know exactly where I will go with it. I started out feeling thankful for Walgreen's. I actually felt a little down when I began writing because of the memories of my mom and knowing John has at least six tough months ahead of him. But by the time I finished writing, God was reminding me of how I can glorify Him through everything and how that is all that truly matters!

Saturday, September 12, 2009

Week One continues...

John completed his first round of chemo yesterday. He did fine all week, only feeling very tired after the long days of infusions. Last night, however, he really started to feel worse. And today has been a tough day. He is not tossing his cookies, but he has waves of nausea that feel like severe motion sickness. He is prone to motion sickness normally and has to take Bonine when we travel. So we are wondering if that is contributing to how poorly he is feeling.

Since he is in a clinical trial, they monitor everything he takes and I'm reluctant to let him take anything without getting approval. But I wondered if taking some Bonine might help him feel better and not pose a problem for the trial. So I put a call in to the doctor's office and the nurse practitioner on call should be calling me back within the hour. My guess is that will be fine. But I just feel better about clearing it first.

I hope and pray tomorrow is a better day for him. I made some soup for dinner and am keeping his glass filled with ginger ale. I feel helpless and I don't like seeing him feel so bad.

He says he has to close his eyes when car commercials come on (the movement). That would actually be kind of funny if he wasn't so sick. (He's a car dealer, badumpbump.)

Friday, September 11, 2009

Today's Update

Today is John's last day of his first round of treatment. Today is a long day because he's getting Lumiliximab, Fludarabine and Cyclophosphamide. I had to drop him off this morning and come back home so our new refrigerator could be delivered. The removal of the old one and installation of the new one took two and a half hours. When the installers left, I called to check on him. He sounded sleepy and said not to rush back down there because he was snoozing off and on anyway. So I warmed up the leftover half of last night's calzone and had it for lunch. And now I'm getting ready to head back to Sarah Cannon.

John has done great this week. He said he is extremely tired and the only way he can describe it is to say he feels wrung out like a rag. Nevertheless, he felt up to going to the dealership before coming home yesterday afternoon. And I finally had to insist we leave at almost 7:00. (I threatened to leave without him.) He promised he wouldn't ask me to take him again today, since we went yesterday. But he plans to go in tomorrow. I'm not going to attempt to control him unless he does not use good judgment and I can tell he needs to be home. It's probably good for him to go check on things if he feels well enough.

My online account with the publisher is now open. I am getting ready to send my final (for real this time) "last revisions" to my editor so he can make a few changes to the PDF. And my cover designer has notified me that I will have the finished cover Sunday. I have been toying with the idea of adding some text to the back cover and am waiting for her to let me know if that would represent a major delay (if she has to make changes this late). If so, I'm going to leave it as is and get it submitted.

Upon submission, the publisher will print as many proof copies as I request so I can have several people read through looking for any printing errors before the book is officially printed for public consumption. I have read through the entire book many times and it never takes me longer than two days. I will only ask for readers who can read through it quickly for me. Once I'm satisfied that we've caught any misprints, the book will be produced and the first batch will be sent to me. I've been advised that it takes another six weeks or so for other distributors to have the book (like Amazon). So the first copies will only be available on my website unless I get some copies stocked in a few local book stores. I haven't even gotten to the marketing part yet. I have barely thought about it, to be honest.

Once I submit my files, I can't see it taking longer than two weeks to have books. So I thought I would let you know that. Some of you who have pre-ordered have been waiting a while and I want to say one more time that I really appreciate your patience! You will have your book soon!

Thursday, September 10, 2009

Updates on treatment and my blogging...

This is Day Three of Week One. No reactions or complications. So far, so good. John is doing well. His platelets did not fall today as we were told they might. In fact, they went up and all of his counts remained normal. The study nurse told us it can take up to ten days for the counts to react to the chemo. I know they will eventually fall, but today they are great. His neutrophils are strong, too. When neutrophils drop, you are much more prone to infection.

We didn't get home last night until about 6:30. It was really a long day. Today and tomorrow will also be long days. But tomorrow I will drop John off and go back home for the delivery of our new refrigerator, then come right back to keep him company for the afternoon. Neither of us wanted to delay this delivery and the person who scheduled us said it wouldn't be a problem to set delivery between 10:00 and noon.

There really isn't much to report today. We are just cruising along and doing fine.

There is one thing I was thinking about this morning that I wanted to say something about on my blog. It's about my blog.

When numerous friends have asked that I keep them updated on John, I have almost felt like I might have hurt a few feelings by reminding close friends that they can check my blog to see how he's doing. I want you to know that I am not suggesting you check my blog in place of any personal contact. It's not that I am trying to avoid a conversation. It's just that we have been overwhelmed by the outpouring of concern since I have been sharing John's diagnosis and treatment openly and I know that I can't possibly make calls and send personal emails to every single person who asks me to keep them updated - especially during treatment weeks. When we got home last night at 6:30 PM (after leaving the house at 7:30 AM), I was worn out. All I did was eat a few peanut butter crackers, drink some milk to take my vitamins, fax some signed contract forms to my online publisher, exercise, shower and go to bed.

It's hard to have a phone conversation from the treatment room because there are other patients, family members and staff around me. I try to talk softly, but my voice carries. So I feel like everyone is listening to every word. In this setting, I can even sound like I'm not okay or I'm exhausted (even though I'm fine) simply because I'm not speaking in my normal voice.

I have bouts of carpal tunnel as a result of spending this whole year at the keyboard, writing my book, too. So I don't type as many long emails as I once did.

All that to say, I sincerely hope I have not offended any of you by asking you to check my blog. It's just that I can post all the details some of you WANT to know once and it can be read by everyone at your individual convenience any time you feel like checking. And if all are not interested in every detail, they can skim and just see that we're doing fine. Then when we do talk, it doesn't have to be primarily medical conversation. We can talk about things I may not have shared on my blog.

One of the things you will discover quickly if you ever go through something like this (and I know that many of you already know this from experience) is that you find yourself repeating the same information over and over and over, answering the same exact questions, etc. Sometimes I get tired of hearing myself say the same things. I am so "into the details." But not everyone is. I realize that. By sharing the details on my blog, I don't have to worry that I'm boring you with too much information and you're being kind to listen. I know you would not be reading if you didn't want the information. And I never have to know if you choose to skim over it (unless you enjoy telling me - ha ha).

I'm not much of a phone person. With only a few exceptions, it rarely ever crosses my mind to pick up the phone and call someone. Some of you may have noticed that when we talk on the phone, at least 70% of the time, it's because you called me. I tend to prefer talking face to face or writing. I'm really not sure why. That's just how I am put together for some reason.

I just wanted to share these thoughts in the event that I might possibly have made anyone feel bad when I asked you to check my blog for updates on John. I welcome your phone calls and I never intended to imply otherwise (in case I did).

Wednesday, September 9, 2009

09-09-09: It will be easy to remember the date of John's first cycle of chemo!

Yesterday went fine; completely uneventful (I love uneventful). John received only 100 mg. of Rituxan (a partial dose the first day in order to minimize or eliminate a reaction). Rituxan is a monoclonal antibody that targets CD 20 in the blood. Lumiliximab is also a monoclonal antibody, but it targets CD 23. Fludarabine and Cyclophosphamide are the actual chemotherapy drugs in this "cocktail" for CLL. For those unfamiliar with CLL, it has been discovered that these drugs have increased effectiveness (above any alone) when given in this combination. John will be getting his initial dose of Lumiliximab this morning (which takes about four hours through the IV). They introduce that slowly, just like the Rituxan, to minimize reactions. When that is fully infused, he will get the F and C. His platelets this morning were 183. Tomorrow they are expected to be 80. That's what chemo does. It kills. Along with the malignant lymphocytes, healthy cells will also die. This includes T-cells, which fight infection. (It can take two years or more for your T-cells to recover. In some patients, they never do.)

The PA who keeps close tabs on John for the clinical trial is Mahayla. (I hope I'm spelling her name correctly.) She checks on him when he arrives and all throughout his treatment. She is so sweet. John's eyes got big when she told him his platelets were going to drop that much from just the first dose, but she assured him that there is no cause for concern unless they drop below 20. This is another one of those reasons why you don't want to wait until you're in trouble with your blood to start treatment. You want a cushion because all your good counts are going to initially take a big dive. It's also why you have to have a recovery period between doses.

Anyway, although John technically began treatment yesterday, today (09-09-09) will be his first dose of the chemo drugs. Easy to remember.

They give the drugs sequentially, so that gives you an idea of why he has to be here so long. Tomorrow he will get the remainder of the full dose of Rituxan. Friday he will get the remainder of the full dose of Lumiliximab. And he gets a dose of the F and C today, tomorrow and Friday.

John went home yesterday and took it easy. I think we were home around 4:00 or a little after. He said he felt fine except for being very tired. He didn't sleep real well last night, but he's getting Benadryl again so he's catching up on his rest now. It's not nearly as crowded here today, so I get to sit in one of the patient recliners instead of a folding chair. The entire staff here at SCRI are wonderful. We have great nurses who appreciate John's sense of humor. To hear all the cutting up, you wouldn't have a clue that we are here for such serious therapy.

In addition to the IV meds, John is now taking Alopurinol (to protect his kidney), Acyclovir and Bactrim (a prophylactic measure for infection) daily. This morning, as he was taking his medications, he said, "Well, I'm officially old now. Look at all these bottles."

Since many of you have let me know that you are interested in the details, I will continue posting blog updates so you can check on John at your convenience. I will say one thing for my role as wife/caregiver; I'm pretty sure I have the sweetest, funniest, most resilient husband/patient in the world.

Thank you again for all your prayers. We definitely feel them. And I can tell that John has no regrets about letting me share this battle with ALL our friends. The outpouring of love, support and prayers from so many have been overwhelming. We feel incredibly blessed to have so many true and caring friends. John is not as "out there" and expressive as I am, but believe me, he feels your love and concern as much as I do. He really appreciates your prayers. And your friendship means every bit as much to him as it does to me.

Tuesday, September 8, 2009

Day One of a CLL Clinical Trial (FCR+Lumi)

I am sitting in a folding chair beside my husband in a treatment room at SCRI (the Sarah Cannon Research Institute of Centennial Hospital). John is still receiving his pre-meds by IV, which include Benadryl (to minimize the chance of drug reaction) and a steroid (to decrease risk of TLS - Tumor Lysis Syndrome - which he suffered after his first Rituxan infusion last summer). As some of you may recall, he breezed through a whole day of being infused with no reaction. Then, only after we left the office, he began to feel faint and passed out in the elevator (hitting his head on the metal threshold as the doors opened) and then doing a repeat performance in the doctor's office a few minutes later. I would prefer we not have that experience again and so does the entire staff, including Dr. Flinn. So we are going to stay for about an hour after he has finished getting today's dose just to make sure he isn't going to react again.

John started taking Alopurinol yesterday. For those of you unfamiliar with CLL or chemotherapy, Alopurinol is a drug that helps protect the kidneys (in John's case, the kidney), from all of the toxins the body has to flush out as the drugs kill the malignant cells and they have to be processed out of the body through the kidneys. He will also begin taking antibiotics as a precaution today because his immune system is about to be severely compromised by the chemo.

John had agreed to participate in a clinical trial since he had to start chemo anyway. In this trial, the standard FCR is supplemented by a fourth drug, Lumiliximab, in an experimental effort to enhance the length of remissions. One group of patients receive the standard FCR and the other group (randomly selected by computer) receive FCR + Lumiliximab. There is extra monitoring involved and additional lab work for the study. John has donated many vials of blood already. So in exchange for all the extra time and blood letting (he he), we have been hoping he would get the fourth drug. We found out this morning that he is in the Lumiliximab arm of the trial. So that was great news.

Although it has yet to be scientifically proven, our doctor (a CLL specialist heading this trial) believes the results thus far suggest that Lumiliximab does extend remissions for most patients by about six months on average. And while that doesn't sound like a very substantial length of time, the longer one can go without repeating treatment, the better. An extra six months without treatment is a gift. Remissions can range anywhere from a year (at worst) to eight years (at best). I'm hoping John's remission will last until the Kanzius machine is approved for CLL. (Human trials for that will begin in 2011 if there are no delays.) Right now, this invention is the most promising thing on the horizon for curing cancer without the debilitating toxic side effects of chemotherapy.

The only down side to being in the Lumi arm of the trial is that all of John's treatment days will be long this week. The days we expected to be short days (because he would only be receiving F and C) will now be long days of F, C and L. Today and Thursday, he receives R (Rituxan). But then we'll have three weeks before the next round.

I have had lots of emotional ups and downs approaching this day. Waves of anxiety are par for the course for most, according to other patients and caregivers I've been blessed to become friends with through participation in CLL forums. (CLL Christian Friends being my very favorite.) Today, however, I feel really positive and unemotional. I'm certain it's a result of all the prayers. I just feel confident that John is going to tolerate treatment well and achieve a good response.

I heard from Lillian over the weekend and she was enjoying three days off with no treatment because of the holiday weekend. She will be having more chemo and radiation this week. One down, six to go (I think that is the plan). She had a lot of pain following the radiation, which was subsiding over the weekend. She said she was just savoring every day of feeling good before the next round starts. My sister-in-law is one tough cookie. Her outlook and determination are amazing.

Thanks again for all your prayers. I will try to update my blog when there is something to report for those of you who like keeping current on details. The rest of you can just skim. (Ha!)

Sunday, September 6, 2009

Random Thoughts

My thoughts are all over the place tonight. It's been a laid back Sunday at home. John came home earlier than usual yesterday. We went to church and to dinner. We have done absolutely nothing today but relax. He has watched sports and I've cooked, baked and read two different books plus a little online reading.

John starts treatment Tuesday and I'm thankful he has an extra day off prior to that. He works six days a week and only takes a few holidays off. Labor Day is one of those holidays. Tomorrow we are going out on the lake (on a pontoon boat) with friends. I can't think of a better way to spend the day before beginning a six month course of treatment. Being on the water with friends sounds really good to me. I baked a batch of carrot cake cupcakes to take along. I have made it through the whole day without biting into one of them - or opening the bag of Lays Barbeque Kettle Chips I bought to take either!

Now that the book is finished, I almost don't know what to do with myself. I am satisfied that I've made every change that needs to be made and am ready to publish. I'm just waiting for my editor to make those changes to the PDF and send it back to me (probably Tuesday). Even though I'm not totally immersed in writing and editing now, I still dream about the book in various ways. While editing, I would dream of sentences I needed to fix. Last night I dreamed about a specific Scripture reference. A friend mentioned this Scripture to me last week - in connection with my book - and it must have lodged in my brain because I dreamed last night that I was writing the chapter and verse in books as I signed them.

I started reading a book today by Francis Chan, called "Crazy Love; Overwhelmed by a relentless God." It's the book our college students are currently reading and discussing in their small groups. I asked Jenna if she thought it was a book I would want to read and she enthusiastically said, "Yes! Pick one up as you leave." So I did. I didn't know if it was geared toward young adults specifically. But my ears perked up when I heard her say to the group that it might be the most challenging book they have ever read second to the Bible. I'm not sure I would have even asked her about it if she hadn't said that. Now that I'm halfway into it, I understand why she said that.

I love books that focus the reader on God rather than self. This book really challenges you not to be lukewarm about God. It's a small but powerful book. I highly recommend it; especially if you are not content to stay as you are. The older I get, the more I feel a sense of urgency not to waste my life here on earth. I want my life to count for the kingdom of God. As I've read this book off and on today, I have wanted to post so many quotes. But for tonight, let me leave you with this one:

"Lukewarm people call radical what Jesus expected of all his followers."

I pray that I will become a radical servant of Christ, holding nothing back and refusing to play it safe.

Friday, September 4, 2009

The home stretch update...

I just submitted registration information with the online publisher. Setting up my account will take 48 hours. If there are no delays, I should be able to submit my book and cover by Wednesday. The entire process from account set up to books in print is approximately two weeks. So I am in the home stretch.

The one thing I just noticed--that I had not noticed previously--is that it can take from six to eight weeks for the book to be available through the distribution channels (like Amazon). I am going to print books to be shipped directly to me so that I can ship copies immediately (through my website) to those who have pre-purchased the book. I have only planned to print 250 books up front because I have to pay the printing costs in advance and I don't want to order more books than I can sell. I have pre-sold twenty-four books so far. Many of you have told me personally that you want a book as soon as it's in print, but the advance purchases not only help to cover my initial printing costs, they will give me a better idea of how many books I should order right off the bat.

I presume there will be many people who will want to buy the book anonymously rather than directly from me. Those readers will have to wait until the book is available from other distributors.

If you want to pre-order the book to make sure you get a copy from the first printing, but do not want to use PayPal on the website, you can contact me personally and I will give you my address. You can mail me a check and I will put you on the first shipping list.

I am not trying to persuade anyone to pre-order the book, but it's the only way I can guarantee you a copy from the first printing. I plan to ship the pre-ordered books first. I don't know any other way to determine how many books I should print to sell myself. And I can't afford to spend thousands of dollars only to be stuck with a stack of unsold books!

Additionally, I have learned that the distributors (like Amazon) will price the book themselves. So I can't predict what the cost will be through other sources. I am selling the book on my website for $20 including tax and shipping just to keep it simple and a round number.

Tuesday, September 1, 2009

One week from tomorrow

I have decided that if I haven't gotten permission to use the song lyrics by the end of this week, I'm going to remove them and proceed with publishing the book. I finished going through the whole manuscript one last time today and decided that although the lyrics from Remember Your Chains are extremely meaningful for me, the book doesn't suffer if I remove them.

I found several very minor things that need to be changed before I submit the file to the publisher and my editor is going out of town tomorrow through the weekend. So he emailed me that he will make the final changes Monday and get the new file back to me Tuesday. John will have a long day of treatment on Tuesday and I won't be home. But Wednesday is supposed to be a shorter day, so I can probably submit the book one week from tomorrow. I'm confident the cover will be ready this week. So there shouldn't be any obstacles at this point.

John will begin chemo Tuesday and will receive infusions daily from Tuesday through Friday of next week. Tuesday and Thursday will be long days (up to seven hours). Wednesday and Friday the infusions won't take as long. We will probably only have to be in the clinic for a couple of hours those days (certain drugs are administered at different rates and you can receive them in a shorter period of time).

He will be getting the standard CLL therapy of FCR (three separate drugs) and possibly an additional fourth experimental drug, Lumiliximab. We will know which group he's in prior to treatment. But it's a computer randomized selection.

His marrow is only 30% infiltrated with CLL. His blood is almost normal. But his lymph nodes are enormous everywhere. He has some very large ones in his abdomen, which are probably the cause of his extremely severe reflux symptoms. His reflux has gotten so bad lately. And Dr. Flinn said the nodes push everything up when they get this large. So it's likely that those symptoms will lessen as the nodes shrink.

John is the clinic clown. He is pure entertainment the whole time we're there. He cracks up the doctor, the nurses, everybody he crosses paths with. Today Dr. Flinn concluded our visit by saying, "So I guess we're ready to go on this." And John started singing..."Let's get it started..."

Anybody who can entertain while having a bone marrow biopsy is a born entertainer. That's all I can say.

Oh yeah, Dr. Flinn asked John, "So, how have you been feeling?"
And John said, "Good!"
And I told Dr. Flinn, "I never get mad at this man. He is the easiest person to get along with that I have ever known. But if I WERE ever going to get mad at him, I would get mad at him for ALWAYS telling everyone -- including you -- how GOOD he's doing. He's been feeling like crap and he will tell me. But he will never tell anybody else. So I just wind up looking like a big fat liar."

There. Got that off my chest.

On the way home, he was teasing me about my rant. I said, "Well, I draw the line at you telling the doctor you feel good." He said, "I just thought he meant aside from my CLL. He knows I'm not feeling great. I'm starting chemo. I wouldn't be starting chemo if I was feeling great. It goes without saying."

I can't win this one. But if you really want to know, ask me. I will tell you the truth. John considers that whining. Lord help him if I ever get seriously ill. There will be whining. I can promise you that.