Sunday, August 30, 2009

The finishing touches!

I just sent the final, endlessly revised, typeset manuscript back to my editor. I don't know if he will look over all of my finishing touches or simply convert it to a PDF. I made lots of minor revisions throughout the book. He has to be as ready to be done with this project as I am by now!

Since he sent me the typset file a week ago, I have read the entire book three additional times (making edits each time). The first time I reviewed it on my laptop and made changes as I read. Then I printed the entire manuscript to proofread on paper, making marks in red ink as I read. Then I made those changes to the file and reprinted the pages that had changed. Then I decided to read the whole printed manuscript one last time to make sure I hadn't missed anything. I made further minor changes and caught several things I had missed the third time through. This time, though, I moved back and forth from the printed version to the file as I read, making the changes to the file AND in red ink on the printed page.

Before I sent the file to my editor tonight, I reread several paragraphs to make sure I was satisfied that I couldn't say it any better or with any greater clarity. I really feel that this third run through was fruitful and I improved several passages a great deal with just a few added sentences.

However, at this point in my writing experience, I think that if I continued to read this book endlessly, I would probably continue to make minor changes endlessly. No matter how many times I review it, I always feel like perhaps I could say something a little better or a little more clearly. But I do feel confident that I have caught all the typos. (I sure pray I have!)

As I have pored over this text again and again, I have been reminded of words of wisdom from one of my English professors at Vol State. The class she co-taught combined Honors English with Honors US History. We studied and wrote about history. But we wrote lots and lots of papers and book reviews. All of our exams were essays. It was challenging, but stimulating. And since we were all honors students, we were all over-achievers who were up for the work. So the kind of lectures WE got from our professors were a bit different from the regular classes.

On this one occasion, our professor told us two important things to remember. First, she set a piece of paper down on the table and said, "This is my paper. This is me. I am not my paper and you are not YOUR paper. Remember that." Then she said, "No matter how many times you turn in a paper, have me critique it and then revise it, it will always feel like a work in progress. It can always be better. There is no such thing as a perfect paper. Sometimes you just have to lay it down and say it's good enough."

That's kind of how I feel tonight. It was so hard to let go of the manuscript, send it back to Geoff, and say (to myself) "I'm done." I actually had the thought that maybe I should read it through one more time just to be sure. But I'm not going to. I am going to follow the advice of my former professor and lay it down. It's good enough.

I hope to submit the file to the online publisher some time this week. Once it's submitted, it's a two week turn around for printed books.

Friday, August 28, 2009

Unexpected Blessings

I have to take a break from proofreading my printed manuscript to share the details about last night.

John and I have had the great privilege to become friends with Charlie and Hazel Daniels after going to Israel together last November. Even though we attend the same church, we had never met Charlie and Hazel, or their family, prior to that trip. Getting to know them--all of them--was a real treat for us. Finer, more genuine people you will not meet. I can assure you of that. They are warm, down to earth, caring, generous. I can't say enough good about them. But for the purpose of this blog post, I'll leave it at that.

When I reluctantly asked Charlie if he would have any interest in writing the foreword for my book, I feared I might be imposing on him and his kindness. I made it clear that I had no expectations and my feelings would not be hurt if he were just too busy to even consider it. I was literally shocked when he responded that he'd be honored to write the foreward and to send him the manuscript. You could have peeled me off the ceiling that day. Then I worried that he'd read the book and change his mind. John said, "If that happens, I'll have to get you a room in a psych ward for a few days until you recover." LOL. I said, "No kidding." But that didn't happen. Charlie said he enjoyed reading my book and he wrote a lovely foreword for me (a portion of that foreward is on the book's website).

About a month ago, I emailed Charlie to tell him that we were coming to see him perform at The Wild Horse in Nashville on the 27th. John always buys concert tickets front and center, so I told Charlie I was sure we would at least be able to smile and wave to him on stage. Yesterday I called Hazel to see if she would be there and she said she wasn't going to make it. They are on the road so much, I completely understood why she would want to take the night off and enjoy being at home. She asked me how John was doing and I told her that he's doing okay, but he is going to have to start chemo soon and we're obviously not excited about that.

I have been so open lately about John's CLL (even writing about it on my blog) that I forgot we had never told Charlie and Hazel about John's diagnosis of two years ago. When we went to Israel last November, John still wasn't that comfortable bringing it up or talking about it. Only family and a few close friends knew what was going on. I probably stunned Hazel a bit with my announcement about chemo, but she didn't question me; she just told me to give John their love and they'd be praying for him.

Back to last night...
We arrived at The Wild Horse and found our table. I am always amazed at the seats John gets, even after having great seats time and time again. Our table was right up against center stage. And when I say center, I mean that when Charlie looked straight down, he was looking into our smiling faces. We didn't expect to go back stage or talk to him personally. We were just looking forward to a great show. Charlie is an amazingly talented musician and entertainer.

When Charlie came out, he looked down and saw John. I don't think he was expecting us to be that close. His eyes widened and he grinned. He came onto the stage playing his fiddle and he just very spontaneously tossed his bow in John's direction. It was fun. And it's a good thing he tossed it to John because I'm not that coordinated. I wouldn't have caught it and might possibly have lost an eye in the process of awkwardly trying.

A little later in the show, one of the stage guys (he looked like Charlie's right hand man or stage manager--but I'm sure they go WAY back as friends as well) came over to the edge of the stage, bent down and handed John a note from Charlie (written on an envelope filled with personalized guitar picks). He wanted John to know he was going to be praying for him. I was really touched by that and I know John was as well. He had written the note off stage while one of the band members was performing a solo.

The concert was fantastic. And then to top it off, Charlie received some songwriter awards from BMI that he hadn't even known he was getting that night. It was a complete surprise to him. BMI keeps track of how many times a songwriter's song is performed. Charlie got awards for the millionth performance of three songs. Then he got an award for the four-millionth performance of The Devil Went Down to Georgia. So, in all, seven million performances of four of his songs. I guess this is one reason why he's considered a legend.

When the show came to a close, two very unexpected things happened. The drummer (who was amazing, by the way) walked up to me and handed me his drum sticks from the evening. That's something that has never happened to me regardless of how close our seats have ever been. And then we were invited by the same man who delivered the note to come back stage. He said Charlie would love to visit with us if we wanted to come back. Wow. I certainly did not expect an invitation like that.

We went back stage and sat with Charlie in the dressing room. So many people were wanting to see him and talk with him. I almost felt guilty to take up any of his precious time. I also knew he had to be worn out from the performance because he really gives his all on stage. But he assured us several times that he wanted to be doing exactly what he was doing. John asked if he wanted his bow back and he said no, he did not. He wanted us to keep it. (I was hoping that's what he'd say.)

We got to see Dean (who has been with Charlie and driven his bus for so many years that he's a part of their family). Dean and his son also went on the Israel trip with us last fall. And we hadn't seen him for months. So I was happy to be able to give him a hug and say hi. We also got to meet Paula. She handles advertising, promotion and publicity for Charlie and has been with him for years and years (over thirty, if I'm remembering correctly). She was so sweet. I have yet to meet anyone connected to Charlie who isn't warm, kind, gracious and down to earth.

We shared with Charlie a few more details about John's CLL and his upcoming treatment. John pointed out his very swollen lymph nodes and told him he hasn't been feeling well, but that we expect to get good results from treatment and a long remission. Charlie assured us of his continued prayers.

Charlie told Paula about my book and that he'd written "a little blurb" (as he always calls the foreword) for me. She asked me some questions about it and seemed genuinely interested in reading it. I always feel honored that anyone would have an interest in reading my testimony. I don't presume that my life would be of interest to just anyone and everyone.

On the way home, John was saying how interesting life is and how amazingly God works out details in our lives for His purposes. He was expressing that I should never question whether or not God has been with me in writing and publishing this book because of the doors He alone has--that only He could have--opened. I was saying how much it means to me that Charlie was willing to write my foreword. And John said, "Yeah, who would have guessed when I was a fan of Charlie's and going to see him in concert for the first time in Evansville, back in the seventies, that we would wind up going to the same church thirty years later and take a trip to Israel together; that I would be married to the love of my life, who just happened to grow up in a cult and write a book about her life; that Charlie would write the foreword to my wife's book and we would be sitting back stage visiting with him after a show in Nashville?" (He had started out very seriously, but by the end we wound up laughing. I always joke with him that if he had known everything that's in my book back when we first met, he might have been afraid to even date me!)

We made other dear friendships on the Israel trip, too. You just wouldn't know the names of the other very special friends we made on that trip. But the neatest part of it all is how God worked out the timing of when we would go and what He would accomplish through our going on that particular trip (both spiritually and relationally).

I had a desire to go to Israel with the church long before John did. He didn't see how he could go for many years because of his business obligations. I mentioned a few times that I would love to go. And I even pointed out once or twice that we shouldn't put it off too long because we are both getting older and our health and longevity are not promised to us. I really wanted us to make that trip together and be in good health when we went. But I wanted God to put a desire in John's heart to go. I didn't just want him to go FOR me or because I put pressure on him to go. So I tried to plant a few seeds for thought, but then I backed off and just waited. And God did put the desire in John's heart to go (sooner than I expected). He made the decision that we were going on the November trip, then told me we were going. We didn't have any idea Charlie and his family were going on the same trip until after we'd reserved our spot. His presence on this trip had nothing to do with our decision to go. It was just a very pleasant surprise.

God added several very dear friends to our lives and deepened other existing friendships through our trip to Israel, just as He is responsible for bringing John and me together a little over six years ago. I don't believe in coincidences. I believe in the sovereignty of God. And I'm very thankful that God's plan for our lives included the dear friendships of Charlie Daniels and his wonderful family.

I know I say this frequently at the end of many blog posts. But it's true. I am so very blessed. I have so much to be thankful for. Along with my blessings, there are certainly still challenges in my life (like John's CLL and the uncertainty of our days here on earth). But in the constant reality of God's faithfulness to us, even in my darkest days, I can never question certain things that have been undeniably proven to me again and again throughout my life:

God is faithful.
He loves me.
He is working all things for my good.
I can trust Him.

Wednesday, August 26, 2009

Relieved it's over!

Let me begin by saying that my husband is physically very tough. I am not. I truly believe that I'm a wimp. And I'll be the first one to tell you so.

Today was John's first bone marrow biopsy (there will be many more in his CLL future). John was fine. I was scared to death for him. When we scheduled this, they told him that he had three choices. He could receive local lidocaine injections. He could have local injections plus IV meds. He could be put under general anesthesia and not feel a thing. I guess I don't have to tell you which one of those options I would have chosen.

I have read about a wide range of BMB experiences. It seems that the degree of pain experienced by the patient depends on a couple of things. All our bodies are not alike. Some people are just born with a higher tolerance for pain. But beyond that, there are different skill and experience levels of those who perform these procedures. I have read about many patients who said their BMB was no big deal. And then there are those who describe it as brutal and excruciating pain. John didn't think he wanted to choose general anesthesia. I convinced him he might be wise to at least take the IV drugs along with the lidocaine. Since he did not elect to be knocked out, the BMB could be done right there in Dr. Flinn's office.

On the way to the office, I had a tremendous amount of anxiety. John was fine. Sitting in the waiting room, I looked at John with big, anxious tears and asked, "Do you want me to go in the room with you when they do it?" He asked what I wanted to do. I had such mixed emotions. On the one hand, I felt like I would rather be in there knowing he was okay than sitting in the waiting room wondering what was happening. But on the other hand, I didn't want my frazzled nerves to create any unnecessary stress for him. I didn't feel like much of a comforting presence and I wanted him to have the option of saying it might be better for me not to be in the room. But he didn't say that, so I went. I figured that if I couldn't handle it, I could just close my eyes.

I did not look at any pictures or watch any YouTube videos about bone marrow biopsies. I didn't want to add to my anxiety. In my mind, I pictured a large needle going into John's hip and withdrawing marrow into a syringe. I imagined a painful needle jab piercing his hip bone. After John received the IV meds (ativan and morphine), they had him lie on his stomach and drop his shorts ever so slightly to expose the upper portion of his hip. While I was feeling fear and dread, John was cracking jokes with the nurses. I have to tell you that John actually helped MY nerves to relax a bit with all the humor because he kept making me laugh. We know all of the nurses in Dr. Flinn's office by name after eight weeks of Rituxan treatment last summer. John was loose and cracking jokes but I made no secret of how nervous I was. One of the nurses asked me if I wanted some IV drugs and I said, "I would if I didn't have to drive us home."

The NP explained everything she was about to do. The nurse who assisted her had told John prior to the procedure that the instrument they use to withdraw the marrow is like a tire plug with a T on it. John understood the implication of that. I did not. I have no idea what a tire plug is. I was still thinking "big needle."

Let me add an aside here. I have compassion flowing through my veins. Not only can I not stand pain, I can't bear anyone else's pain or suffering. I could not inflict physical pain on my very worst enemy. When my sister-in-law, Cheryl, was having my niece, Lexi, at home, I had to go lie down on the couch and get a grip on my emotions while SHE was in labor because her soft moans conveyed to me just how much pain she was in. It felt like my heart was going to come out of my chest and I got very lightheaded. But it had nothing to do with having a weak stomach. I don't have a weak stomach at all. I just felt so sympathetic that I couldn't hardly stand up for several minutes. I could never be a nurse.

Anyway, I just thought that might help you to understand my emotional condition today as I sat next to John on the table with his hip exposed and looked at the "kit" and the "instruments" as they prepared him for the procedure. John told me later that he didn't think the IV meds did much other than to relax him. And the nurses explained prior to the procedure that there is no way to prevent the pain of piercing the bone and extracting the marrow because you cannot deaden the inside of a person's bone. The only way to avoid that pain is to be knocked out. But they assured him (and me) that the intense pain would be over in about ten seconds. John was positive he could stand just about anything for ten seconds. I wasn't sure I could even look.

The first thing the NP did was to administer the lidocaine just under the skin. Then she started poking the needle all over the place, hitting the outside part of his hip bone. She told him it would feel like a bee sting. John said it didn't feel too good, but he continued to crack jokes.

Then she picked up this "thing" that did not even resemble a needle (in my opinion). Here's what it looks like...

When I saw it, I instantly understood why the NP made an incision in John's hip with a scalpel. You can't really tell from this picture, but the metal "needle" is larger than a heavy nail. It looks like it could be about the size of a Bic pen (and I don't mean the point of the pen). After the incision, she picked up this instrument and at that point my eyes filled with tears, I closed them and started praying real hard that God would let it be over quickly and not let John suffer horrific pain. She told him everything as it was about to happen. She had already explained that the aspiration would be the most painful part and that it would last about ten seconds. So when she began counting down from ten, I knew she was doing the most painful part. (I was praying.) And the next thing I knew, she stopped counting after she said seven. John said, "Is the worst part over?" And she said it was. I opened my eyes and the "thing" was still sticking out of John's hip. From that point on, I was able to watch.

She inserted clear tubes into the metal object into which the marrow seemed to just naturally flow into (kind of like blood flows out into the tubes when you give blood). I think she filled a couple of those and then she said she had to chip off a little piece of bone. She said, "I'm going to wiggle this around and it's going to feel kind of weird, but I have to make sure I do it enough to get a piece of your bone. If it comes out without a piece of bone, I will have to do this all over again." John laughed and said he definitely didn't want her to have to do that.

After jiggling the "thing" around a bit, she withdrew a tiny little bone fragment and said, "We're done!" She then removed the "thing" from John's hip bone. And John said, "It wasn't a walk in the park, but it definitely wasn't as bad as I thought it might be." I asked, "Worse than the kidney stone?" And he said, "No, the kidney stone was a lot worse." I asked, "So you definitely would not consider being knocked out for this the next time?" And he said, "No. It was very tolerable." I then asked, "What if I had to have one? What would you suggest I do?" And he said, "I would tell YOU to get knocked out." LOL.

I was so relieved it was over and he hadn't considered it excruciating that I could have cried tears of relief. They made him lie still for a while just to make sure he wasn't woozy from the drugs and would be fine walking out to the car. He insisted he didn't really even feel those IV drugs. He was ready to go.

I realized just how bad my nerves had been as we were getting on the elevator and I started to get the chills. I was again on the verge of tears and said to John, "I am SO glad that's over. I can't stand to see you suffer." He smiled and said, "But I really didn't suffer. You were in worse shape than I was."

So, it's over. He probably won't have to have another one for six months (when treatment ends the BMB will tell us if he has achieved a complete response to chemo). This one will tell us just how much of his bone marrow is infiltrated with CLL.

I have to admit that even though John said the BMB was tolerable, I won't be that brave if I ever have to have one. I will choose to be completely sedated. John is WAY tougher than I am. He drove HIMSELF to the doctor's office (from the dealership in Shelbyville) while suffering from a kidney stone that had blocked his kidney 100%. I never could have done that. I would have called an ambulance. That is just one of the many differences between John and me. And I admire him so much; I truly wish I were more like him. But I am so thankful that he likes me just the way I am.

Thank you all so very much for praying. I truly believe that the countdown from ten was abbreviated by the mercy of God. (I know that I for one was saying please, please, please as I prayed.)

John admitted that if he had to endure a full minute of the pain he experienced for a few seconds, he WOULD consider being put under. That's all I need to know in the event that I have to make a sedation decision in my own future.

Tuesday, August 25, 2009

Plugging away...

I'm still working on getting my book wrapped up. I spent all day Sunday and Monday reading and making my final revisions. The editing process has been a great learning experience. An editor does so much more than just check your sentence structure and help you say things more concisely where possible. My editor's questions have helped me to see where I needed to add more detail (as well as where I had given more information than necessary). There have been times when he's asked a certain question and I have wondered; Why does that even matter? But then after I go an extra step in finding the answer, I often see tremendous value in his questions and those questions have led to more clarity for the reader. Sometimes finding the answers to his questions add clarity even for me. Then there are other times when he's asked me to explain something in more detail and after I supply all of the intricate details I have left out, he doesn't suggest a single change. In those cases, he says that having more detail made it clear to him that it was fine as it was written. But sometimes in those situations I have wanted to jokingly say, "You're kidding me." LOL.

My editor lives in Pennsylvania, but he is from Nashville. We have done the entire edit electronically. I did get to meet him in person one time when he came to Nashville for the weekend over a month ago. We met at Starbucks and talked for an hour and a half. I know in that meeting he understood my passion for this book and its mission. We have worked well together and as he has gotten to know me better he has gotten to where he will occasionally even tease me in the side margins. Like, for instance, in one chapter I mention that I'm wordy and tend to say things three different ways. In the margin, he typed, "Really?"

I think I have made all of my final revisions at this point. I'm waiting for one person to read the changes I have made to one specific chapter and verify that I have gotten all the details 100% correct. And I'm waiting for official permission to reprint lyrics from the Steven Curtis Chapman song "Remember Your Chains." I hope to send the finished manuscript back to my editor by this weekend. I should be ready to submit everything to the online publisher next week if I get the publishing permission back. That's the only thing that could hang me up a few more days. I should have thought to request permission for those lyrics a long time ago. But, hey, I have never written a book before. I'll know better next time.

Last night I helped for the second week in a row with The Gathering at my church. It is for the 18 to 25-year-olds. We prepare dinner for them. They have worship and small group discussions (Bible Study). Then we break out dessert. Months ago I jokingly told a friend (Jim Wideman, an associate pastor at WOC) that I needed a ministry opportunity where I mainly just cooked for people. A few weeks ago he emailed me and asked if I was still interested in that ministry because he had just the spot for me; The Gathering. I responded "Let's talk about it." And that very week I was officially recruited by him and Jenna.

Feeding a large group of young adults is a big job. I will admit that I'm exhausted by the time I get home (around 10:00). Last night my back and my feet were aching by the time I left the church. But the whole time I was there, I felt overwhelmed with thankfulness for being in such a thriving community of faith where I have the opportunity to be engaged in serving and encouraging others; especially young people.

I am at home in the kitchen. This is the perfect "spot" for me. And I love, love, love working with Jenna. She is such an inspiration. Last night she was asking me about John's CLL and I was explaining it to her. She asked if she could pray for us right then. There were three of us in the kitchen and we held hands as she said the sweetest prayer for John and me both. The whole time I was there, from 4:30 till almost 10:00, I could not stop thinking about how happy and how thankful I am to be at WOC. I love how connected and involved I feel. When I first started going there, I wondered if I could ever feel that connected in such a large church. I never imagined knowing as many people as I have come to know. I have been there for six years now and I just cannot imagine being anywhere else. WOC has become my church FAMILY. I know everyone does not feel that way about their church. I know of so many people who search and search, but can't find the right place where they feel like they fit. I know I am so very blessed. God has been SO good to me. I look forward to many more Monday nights with this wonderful group of kids and adults.

This post is kind of a mish mash of my thoughts, but I can't conclude it without mentioning that John will be having a bone marrow biopsy tomorrow (Wednesday) around 12:30. I think I'm more anxious than he is. He tolerates pain well, but I know he is not looking forward to it. I hope and pray it will be tolerable and not horribly painful for him. If it were me, I wouldn't be brave. I'd say, "Knock me out! I don't want to feel a thing!" Thursday morning he has some CT scans. And Monday we see the doctor about starting the chemo. Please pray that he tolerates all of this well and achieves a complete response to the treatment. I want him to feel good again and have the longest remission in medical history. (Is that too much to ask?)

I talked to Lillian tonight and she sounded really good. They have been giving her strong anti-nausea medication and so far she has not been sick. She knows that is still coming after the chemo builds up in her system. There is a cumulative effect. John was told that as well; that he will probably feel worse after he's had several rounds of treatment. But she is just enjoying and appreciating the fact that she feels good right now. These Howertons are just genetically tough and have such positive attitudes. I'm glad my sister-in-law is such a fighter.

I'm very thankful for my friends. One of the things I love about having a blog is that I can tell you all the time how much I love and appreciate you. Thank you so much for your prayers -- and for just being there.

Saturday, August 22, 2009

A Quick Update

I just received the completely edited and typeset manuscript from my editor. Once I review it and send it back to him, he will convert it into a PDF file and it will be ready to submit to the online publisher. After that, the publisher will overnight me the first printed copy for yet another proofread. And then I'll be printing books.

If everything goes smoothly, I will definitely meet the September 14 deadline. The publisher says that it is a two week process from the time I submit the file to them.

Thursday, August 20, 2009

Preparing for Treatment

We saw Dr. Flinn today and, as we expected, he said that he thinks John needs to enter treatment for his CLL. What makes this such a hard decision is the fact that John's blood is actually very stable. He had Rituxan (monoclonal antibody) last summer and his blood has been normal or nearly normal ever since. But his nodes were only reduced for a short time and then started to enlarge again.

We asked Dr. Flinn today if this is a rarity in CLL (such good blood counts with such active progression in the nodes). He said that actually it is not. Some patients with CLL present more as a lymphoma than a leukemia even though they do, in fact, have leukemia. You see, chronic lymphocytic leukemia is a disease of the bone marrow. That's where your lymphocytes are produced and that's where they somehow go bad, become malignant, and proliferate. From the bone marrow, these malignant lymphocytes then infiltrate the blood and lymph nodes. They can accumulate in either.

When they grow in the blood, the patient will develop issues with their blood. The malignant lymphocytes don't die (healthy lymphocytes do their job - fighting infection - and then they are programmed to die, as the bone marrow constantly manufactures new ones). These malignant cells are not only dysfunctional, they don't complete this "dying process" called apoptosis. They proliferate and accumulate, eventually crowding out the healthy blood cells. So, lymphocytes increase and ultimately healthy red blood cells decrease. You wind up with all sorts of problems like dangerously low platelets or anemia, etc. And your body gradually loses its ability to fight off infection. When the malignant lymphocytes accumulate in the lymph nodes, the patient experiences swelling all throughout their bodies. John has enlarged nodes in his neck, armpits, groin and abdomen.

A patient can choose to tolerate the swelling if he wishes to avoid the toxicity of chemotherapy. But the nodes become very uncomfortable and it does mean the disease is progressing. Fatigue increases along with that. And if the nodes become very large in the abdomen, they can affect organs or pinch an artery. You don't want that to happen, obviously. So, while you don't want to treat with chemo prematurely and suffer unwanted side effects unnecessarily, you also don't want to wait too long and allow the disease to progress so much that you won't get a deep remission when you finally do decide you don't have a choice.

Adding to the weightiness of the decision is the fact that all patients respond differently to chemo. Some tolerate it well while others do not. And there is no standard response. Some will get long remissions and others will not. But when the CLL comes back (and it always does), it will be more resistant to treatment. Stem cell transplants are being done more and more, with higher success rates. But I think there is still a 40% chance of the transplant killing you. So you don't go straight to that option if you might get years of remission from FCR (standard chemo for CLL). Usually, that option will be put on the table when you come out of remission the first time.

John was diagnosed a little over two years ago and I really hoped he would stay in watch and wait status for a lot longer than two years. But I'm thankful for the two years. I wish we didn't have to use chemo this soon. But I'm thankful his leukemia is treatable. It's a mixed bag of emotion. I wish he didn't have to have any disease in his body, but I know it could be worse.

I have been feeling emotional, anxious and fragile this week. I've been weepy and a little depressed. I dreaded this decision - so afraid of not making the RIGHT decision that is in John's best interest for quality of life and long term survival. Certain fears have crept back into my thoughts. I've looked in the mirror every day and seen the stress in my eyes. I have felt and looked old this week. But today I really felt the prayers everyone has been praying for us. I didn't feel emotional when I got up this morning. And I noticed as I was getting ready for our appointment that I didn't have that stressed out 'I'm going to start crying any moment' look either. I got through the day without any tears or anxiety. This is the next step in our journey. Sometimes we just have to accept what we cannot change.

The only decision we have to make now is whether or not John will participate in a clinical trial. But whether or not he enrolls in the clinical trial, he will begin chemotherapy on September 8th or 15th. My immediate concern for him right now is the bone marrow biopsy he will have to have next Wednesday. I've read about them and I know they're painful. He is going to have some pain meds, but he chose not to be put to sleep. (That's what I would have chosen, but he's a lot tougher than I am.)

He will be doing the BMB, scans and labwork the next couple of weeks as part of the screening process that is standard prior to this kind of treatment. And then we will proceed to treatment. If he enters the trial, he will either get the standard FCR or FCR plus an experimental drug that Dr. Flinn believes to be promising. Depending on whether he is getting a combination of three drugs or four, he will be getting infusions three or four days a week every fourth week for possibly six months. The clinical trial is six rounds of treatment. However, I have read of many patients (not in clinical trials) that stop chemo after the fourth round of treatment because they've achieved remission and don't want further toxicity to their healthy cells. Of course, John could do the trial and drop out if he didn't want to do the full six rounds. But if you commit to it, they really want you to stay in it to the end. I have mixed feelings about this part of it because I don't want him to do more chemo than he absolutely has to.

There are so many things to think about, it can make your head spin. And, believe me, it not only can, it does. But I got through this day a lot better emotionally than I expected to. John, of course, is such a rock of stability. He doesn't react to much of anything. He just takes it all in stride. "It is what it is" he always tells me. He is not looking forward to it. But he hopes he will be one of those patients who responds well and tolerates the toxicity well, achieving a long and deep remission. He feels like he's reached the point where he has to do something.

I'm glad I am able to be with him for every doctor visit and sit beside him for every infusion. The only thing I hope they won't allow me in the room for is the BMB. I'm not sure I can handle seeing that; especially if he feels it in spite of the pain meds. I wonder if it's worse than a kidney stone. He said that was the worst pain he's ever experienced. I hope it's not as bad as that.

I so appreciate all of your prayers for John and me today. I wanted you to know that I felt your prayers all day long. Thank you.

Wednesday, August 19, 2009

Quotes from Anne Lamott

I love to read.

I love to read books. I love to read blogs and message boards. I love to read great quotes. Tonight I have been reading Anne Lamott quotes and I'm sure it has something to do with the fact that I have spent this whole year writing a book, but I particularly loved these three:

"Some people may have thought that this book was too personal, too confessional. But what these people think about me is none of my business. "
— Anne Lamott

"Toni Morrison said, "The function of freedom is to free someone else," and if you are no longer wracked or in bondage to a person or a way of life, tell your story. Risk freeing someone else. Not everyone will be glad that you did. Members of your family and other critics may wish you had kept your secrets. Oh, well, what are you going to do?"
— Anne Lamott

"Becoming a writer is about becoming conscious. When you're conscious and writing from a place of insight and simplicity and real caring about the truth, you have the ability to throw the lights on for your reader. He or she will recognize his or her life and truth in what you say, in the pictures you have painted, and this decreases the terrible sense of isolation that we have all had too much of."
— Anne Lamott

Sunday, August 16, 2009

Fighting Cancer Worries with Proverbs 19:23

I just finished talking to Marian this morning. Lillian is recovering from surgery to remove a metal plate that was put in her chin during her first surgery. She wanted that out before she started radiation. Even though medical personnel assured her the radiation wouldn't affect that spot, it was a major concern for her what would happen if it did (severe burning). So she wanted it removed. Chemo and radiation treatments will start just as soon as she is fully healed from the surgery. The surgery was Thursday and Marian says she has had a lot of swelling. But Lillian is tough and she's hanging right in there.

We see Dr. Flinn on Thursday for John's three month visit. His lymph nodes are getting pretty large again. The steroid shots only seem to reduce them for about a month and then they come right back. So we will be exploring other treatment options on this visit. We already know that Dr. Flinn thinks he should go ahead with chemo, which is the best hope for a long remission, rather than just masking symptoms with steroids. John admitted to me last night that he never feels good. And Dr. Flinn believes he will feel much better after treatment. Because John has three out of four good prognostic markers, he fully expects John to have a good response to treatment. I hope and pray he's right. This particular chemo (Fludarabine) is not supposed to cause severe nausea or hair loss. Many patients tolerate it quite well.

I don't look forward to Thursday. Making the decision to proceed with the treatment CLL patients refer to as the "big guns" makes me anxious. Some patients do remarkably well and others regret using it, explaining they've had the immune system of an aids patient ever since. So it's a little scary. I want John to have good quality of life and not be sick. And the hardest part is not knowing which decision will result in the best quality of life for the longest time.

I sure wish John could be asymptomatic like his mom and my dad (who also have CLL). Some patients with CLL never need treatment. But CLL is different in every patient.

I need to stop talking about it, I guess. I'm starting to feel those overwhelming emotions. And that doesn't help anybody. God is aware and I know He cares. His grace is sufficient.

Please keep us in your prayers! I love John so much and it's very hard not to worry about the future. But God does not want me to fear or worry.

Those who fear the Lord will fear nothing else.
(Prov. 19:23)

Friday, August 14, 2009

I highly recommend this book!

CONVICTION WITHOUT COMPROMISE
Standing Strong in the Core Beliefs of the Christian Faith


As most of you know by now, I was taught very unorthodox beliefs growing up in what I now describe as a "blended beliefs" religious cult. I learned the term "blended beliefs" from the book, World Religions & Cults 101. I feel this term best describes the way I grew up because I truly believed myself to be a Christian and I know that the people who are a part of this group today consider themselves to be Christians. Not only are there good people in this group, some of their beliefs are in harmony with the historic Christian Faith. But others are not. One of William Sowders' revelations was the doctrine of perfection -- that believers don't go to heaven unless they have reached perfection in this life. I was emphatically taught that nobody went to heaven based on faith alone in Jesus as their Savior. That was considered a deception of the religious world.

The group was founded on a blended faith of mainstream Christianity plus the distinctive "revelations" and "interpretations" of a man, William Sowders (founder of the movement). However, where William Sowders departed from the historical Christian Faith, the teachings of William Sowders were -- and are -- regarded as God's revealed and restored truths. The group believes that what is today considered orthodoxy was really the initial departure from the true faith and the actual truth has been restored to them through the calling of William Sowders. The group believes they have a unique vision and calling; the restoration of the church in the last days and a return to the truth of the apostles and the early church.

I now realize that this is the common outlook of all cults. All cult leaders claim to have received something original or unique "from God" that no one else has the truth on; thus, the formation of a distinctive group with its own set of distinctive beliefs. William Sowders was our Joseph Smith, our Charles Taze Russell. I had no problem recognizing other cults, but I could not see that I was in one myself. And neither can those who are still there today. They feel persecuted by that word.

I struggled to call it what it was for a long time even after I left. To be perfectly honest, I still feel like I'm being unkind to define the group with the word cult even though I am convinced in my heart of what I've been delivered from.

If you have always known salvation through the cross, you cannot comprehend the baggage I (and others) carry. That was one of the reasons I wanted to write about my experiences. My primary reason for writing was that I wanted to help those who shared my wounds, but I also wanted to help those who have no ability to relate through shared experience to understand this unique spiritual baggage. I wanted to help the average person to understand why people don't leave and why it takes years to recover from these spiritual wounds. One of my newer friends (who was reading chapter by chapter as I wrote the book) said to me, "I keep wondering why you're still there, why you haven't left yet." I knew how far from leaving I still was when she was asking why I was still there. Leaving is HARD. And detaching emotionally even after you've left is also HARD. (Harder for some than others.) Looking back on my spiritual journey, I recognize how toxic and spiritually abusive my church was.

One of the worst forms of baggage is the heavy, false indoctrination (what you once considered "the truth"). It's "truth" you can't find in other settings, so you feel disconnected in Christian churches that embrace the historical Christian Faith. For me, I worried -- sometimes obsessively -- about being deceived and accidentally or unintentionally joining myself to the beast (the false religious system) described in the book of Revelation.

I wasn't sure what I believed when I left. And I wasn't quick to discard everything I had been taught. But I searched and I studied and I listened to sermons and I asked questions. I asked God to show me the truth and protect me from deception. I found myself being drawn to the cross and every message that focused on the cross (whether books or sermons) more and more. When I was still in CGT, I did not have a Savior. I had an example who died to give me a chance, an opportunity, a starting point. No wonder the cross didn't mean to me then what it means to me today! By the way, that is one of the BEST things to come from my unique spiritual journey. I am IN AWE of the cross and what Jesus did for me because, for the majority of my life, I bore the weight of my salvation on my own shoulders. When I found the truth of the Gospel, this weight was lifted off of me. And I will never take for granted the miracle of grace, the miracle of mercy.

Christianity is different from every other world religion because our God died for us personally to save us from our sins.

John 20:26 A week later his disciples were in the house again, and Thomas was with them. Though the doors were locked, Jesus came and stood among them and said, "Peace be with you!" 27 Then he said to Thomas, "Put your finger here; see my hands. Reach out your hand and put it into my side. Stop doubting and believe."

28 Thomas said to him, "My Lord and my God!"

29 Then Jesus told him, "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed."

If you change the doctrine of salvation from faith alone in a risen Savior to an earned eternal paradise, you have made Christianity the same as every other world religion. Every other religion and cult believes heaven is something one earns. They all deny the sufficiency of the cross. Only true Christianity teaches that eternal life is God's gift and something we cannot earn because salvation belongs to the Lord and it is by grace we are saved.

I began writing this post because I wanted to recommend the book I am currently reading, Conviction Without Compromise.

This book has been so helpful to me in understanding the core beliefs of the Christian Faith. Certain Scriptures that were stumbling blocks in the past (because of my indoctrination) have been illuminated for me through this book. For a book on theology and Christian Apologetics, it is easy to read and understand. And every statement is backed up by many Scriptures. At the end of every chapter is an explanation of what certain cults believe (differing from orthodox Christianity) and the Scriptures they use to support their teachings. It has been more than eye-opening for me; it has been eye-popping to see in black and white how many cultish beliefs were shared between the group I was raised in and many of the groups I recognized as cults.

For anyone who wants to more clearly understand the Christian Faith and learn the Scriptures on which Christian beliefs are based, I highly recommend this book. The authors are Norman Geisler and Ron Rhodes.

Thursday, August 13, 2009

Progress Reports

I have added
Updates
to the book's website.

I will still share updates on my blog. Just wanted to let you know that I will periodically add a new note to the website, letting everyone know the projected release date as it approaches. Not everyone reads both sites.

In addition to the excitement about being almost ready to publish my book, I got some very unexpected and happy news this morning.

As some of you may remember, one day last year (I think it was Octobeter!), I shared on my blog about my refrigerator woes. In case you weren't reading then, my built-in KitchenAid refrigerator/freezer just stopped working. To make a long story short, the end result was the sad news that the unit could not be repaired and our builder had purchased a refurbished unit without a warranty. Of course, he did not disclose that to us as the new homeowners!

We had two choices. We could unplug it and do without a refrigerator and freezer in our kitchen or we could replace it at our own expense.

We have a smaller refrigerator in the laundry room. We did not want to spend thousands of dollars right then on a new built-in appliance. (Can you say BAD ECONOMY HURTING THE CAR BUSINESS???) So we just adapted. When we want something cold now, we just automatically go to the laundry room. What seemed like such a major inconvenience in the beginning has become a new routine. Most days, I don't give it a second thought that I don't have a working fridge in my kitchen. But occasionally, it's funny when a guest is trying to help me clean up and goes to put leftovers in that facade of a refrigerator. Other than having to go upstairs to the bonus room if I want ice, it really hasn't been a big adjustment in our lives. I feel blessed to have such a nice back-up unit right around the corner in the laundry room.

A few months ago, a friend of ours came to visit for the weekend and we were laughing about the death of our refrigerator and the mourning of our warranty status. I had been advised that I should not just accept this as the final outcome because I was given a homeowner's manual with a warranty printed in it. And, as John kept pointing out, there should not be such a thing as an eight thousand dollar appliance that, when something goes wrong, cannot be repaired. He said, "Imagine how quickly I would be out of business if, after a few years, a brand new car I had sold someone broke down and I said, 'Oh, I'm so sorry. It cannot be repaired. You will just have to replace it with a new one.'"

We were sharing our dilemma with our friend, Chuck. And he said that his son-in-law worked for Whirlpool. He offered to mention our situation to him and see if anything could be done. To make it easier for him, I wrote a letter including all the details of every service call. He forwarded it to his son-in-law. Chuck later told me that his son-in-law felt like something should be done. So I waited patiently to hear something, not wanting to bug my friend, Chuck, about it. After all, he was very gracious to offer his help (and that of his son-in-law's) and I didn't want him to regret it. I wrote that letter in April and haven't heard anything from Whirlpool. I wasn't really expecting to at this point.

However, this morning I got a very pleasant surprise. I received a call from Whirlpool Corporation apologizing for the long delay in their response and informing me that I am going to receive a brand new KitchenAid built in side by side refrigerator-freezer to replace the defective unit that has been unplugged since October. In the next ten days, I should hear from a local appliance company about the delivery of my new unit and removal of the old one. I am in stunned disbelief! And I'm so thankful! I will also sing the praises from now on of the Whirlpool Corporation and their concern for satisfied customers.

How wonderfully strange it's going to be to have ice available again right here in my kitchen! That's not something I have ever given thanks for in the past, but something I no longer take for granted!

Wednesday, August 12, 2009

Exhausted and Encouraged

I'm going to be so wiped out today. But, at the same time, I feel so good.

Last night I received the final three chapters of edits in my email. I have to review the chapters (accept or reject suggestions, answer questions, fill in gaps where my editor requests more information) and send them back. The editor then reviews my reviews of his edits.

I got these final chapters last night at almost 9:30, after John and I had returned home from walking. By the time I showered and got into my jammies, it was after 10:00. I wanted to review all three chapters, but I was so tired I just couldn't do it. I reviewed one and then went to bed around 11:00 thinking that I probably couldn't get the chapters back to my editor until tonight, since I volunteer at the church office today.

Apparently, that was unacceptable to my subconscious mind. I slept soundly for a little over three hours and then was wide awake, thinking about those reviews. I knew I needed to go back to sleep so I could make it through the day, but it wasn't happening. So I got up and reviewed the last three chapters. The good news is that I'm done and I won't delay my editor's progress. The bad news is that it is almost 6:00 and I'm afraid that if I go back to bed, I will oversleep. I usually leave for the office between 9:00 and 9:30. I guess I could take my chances and be a little late, but I hate to do that.

My editor says he will begin typesetting this week. I am at the point of needing to call the online publisher and set up my account. My cover artist says I will be receiving the cover design electronically any moment now. I'm wondering if it's possible I will actually make my August 31 deadline. I think it's a safer assumption that the book will be published the first week or two in September. I have to have a proof text printed so I can try to avoid even one small typo making it into print. This means I probably still have to read and review the entire book two more times before publishing.

Today is a sad anniversary for us. Six years ago today, John's daughter, Brittany Taylor Howerton, passed away after suffering a fatal asthma attack that escalated into cardiac arrest. The attack happened early in the morning of August 11 and she died on August 12 (although John feels like he lost her on the 11th because she never regained consciousness and was only kept alive by machines). John told me last night that he has awakened at the same time she called for him that morning every subsequent August 11 since. He told me that only after I brought up the date and said, "I never know whether or not I should say something, but I know you have also been thinking about Brittany and what day this is. I wanted you to know I was thinking about her all day." That's when he told me he wakes up at the same time every year on August 11th. When a person has lost someone close to them - especially their child - we should never be reluctant to mention that we're remembering too. There is no chance of "reminding" someone of a loss they haven't already been feeling.

As you might imagine, I'm really tired both physically and mentally this morning. Waking up at 2:00 am doesn't help. Endless revisions are exhausting. And it's the anniversary of a sad day in our lives. We miss Britt. I know that John's heart is heavy remembering this day six years ago.

However, I'm also feeling good about the book and its message. Especially on this day, it means so much to read words about the true Gospel, grace and the assurance of salvation through faith alone in a risen Savior; for me, for you and for our Brittany.

Monday, August 10, 2009

His Strength is made perfect in my weakness!

I just this morning finished reading the entire deposition of Paul Mears. I had read the other two depositions, but kept getting distracted every time I tried to finish Paul's. Wow. After reading all three, it stuns and amazes me how much confirmation is now public record - backing up my own personal memories in detail. When I began writing my book, I had NO idea what questions would be asked in those depositions, how the witnesses would answer; nor could I have known they would wind up on the Internet and subsequently saved to my own hard drive. The book was finished and being edited when the settlement and depositions became "history." How amazing it is to me that just prior to my book being in print, all of this unexpected corroboration of the truth is now public record. I could not have orchestrated that if I'd tried.

I had another one of my emotional days yesterday. I was reviewing an important chapter with a fine tooth comb. My editor is trying to condense each story and I have tried to be open to his suggestions (letting him remove details that he thinks are obvious and don't need to be stated, etc.). While I want to be teachable and flexible and listen to his advice, I also don't want to assume that what is obvious to him will be obvious to all other readers. He cannot fathom how much has already been obvious and yet still completely disregarded. Some things need to be stated very clearly, even though to him it may be stating the obvious. And it's hard work trying to get every last detail just right from that standpoint.

I stayed up late reviewing and again rewriting a specific chapter last night, then went to bed with the weight of the final product weighing heavily on my mind. I dreamed about the chapter, the words, the responsibility I have to others in telling their stories with precise accuracy and giving enough context without being laborious (in my editor's opinion). It seemed like the whole time I slept, I was still engaged in editing. Then I was wide awake at 2:00 AM and couldn't rest again until 5:00.

While I was up, I felt really impressed to go find a little book that had been given to me over a year ago (which I never read because I kind of dismissed it as possibly a gimmicky type of book). The book is "The Prayer of Jabez." I didn't completely finish it before finally getting sleepy. But I intend to finish it today. It's a small book. I couldn't believe how much God spoke to me through that little book I had previously written off. And after an emotional day of feeling like the last thing I wanted to do was even LOOK at a chapter in my book one more time, I felt a renewed sense of purpose and God's reassurance that He has some kind of mission for this book that quite possibly may be more than I fully comprehend.

I feel like such a nobody. I am so inadequate. I don't pray for God to expand my boundaries or my influence. I back up from God assigning me more responsibility than He already has because, quite frankly, the thought of being used by God scares me to death. I am so afraid of messing up and making mistakes. (A by-product of a perfectionism and performance oriented foundation in my life.) But I know in my heart that if God calls us to do something, HE will be the one to equip us for the ministry. He doesn't call ANY of us because we are adequate to fulfill His calling. He just asks us to be willing, even if our willingness costs us dearly and personally.

I long to be God's willing servant. The desire of my heart is to give no thought to how others respond to me. If I am judged harshly or rejected, so be it. I don't want to live for man's approval and acceptance. I just want to be an instrument God can use and equip for His service. It always seems like the days after my days of emotional struggling are the days I feel God's strength fill me to the fullest.

His strength is made perfect in my weakness. Keep reminding me, Lord, of this truth! I need YOUR strength!

Saturday, August 8, 2009

Blog Interview

I was asked to do a "blog stop" interview about my book last week and I gladly accepted the invitation. The host of the blog emailed me today that she has posted the written interview. She told me the spacing got messed up when she copied the text and she didn't have time to make corrections right then. But she said she will be able to correct that on Monday. I also noticed a couple of typos I hadn't caught before sending her my responses. She will fix those Monday as well. But I thought I would go ahead and post a link to the interview.

The Cult Next Door

I have received numerous emails of support and encouragement (along with book orders) in the last couple of days. I'm realistic. I know there are going to be some unpleasant repercussions of sharing my testimony. But I believe this journey is going to be far more rewarding than painful.

I never got around to responding to your comment, Rachel, about the tears and emotion that are part of my book. Yes, you will have many emotions stirred as you read and relive our shared past. There are certain chapters that have brought tears to my eyes every time I have reviewed them. And I've reviewed every chapter more times than I can count at this point. But there are also tears of deep thankfulness and joy; especially toward the end of the book. I can't wait for you to read it. I hope it will be a healing, empowering and liberating book for many.

Thursday, August 6, 2009

Thanks, Rachel!

I've pre-sold my first book!

Rachel Brady is the first person to reserve an advance copy.

The PayPal plan works great. I got an email notification with all the shipping information right there. Rachel, I will never forget that you bought the first book before it was even printed. I love you. Thank you SO MUCH!

Advance Purchase of Your Personalized Copy

BREAKING THE CHAINS

I have been asked by friends when they can put their order in for the book because they want a first run, personalized copy. So I just installed a PayPal link to my website for anyone who wants to purchase the book in advance.

I'm still hoping to publish by the end of August, but I think it could be early September. Once I have the cover and a complete edited file (proof read), printing won't take more than a week. So the end of August is still possible, but I don't know if it's completely realistic. I'm also waiting on the epilogue writer and I have to obtain written permission to print lyrics from a song in the book. So I am on other people's time schedules right now.

Everyone involved in this project has been so generous with their time and talent, I don't want to push anyone or be demanding about a deadline. It will come together when it's supposed to. I have believed from the beginning that God's timing is the best timing.

I don't expect many people to pre-order the book. But I have been asked by several about advance purchase, so I just wanted to make that option available on the website. If you are the first purchaser of the book, I will let you know. That first buyer is going to be very special to me. I am also eager to know that the feature is working properly. PayPal takes a percentage of every transaction, so I didn't want to purchase my own book just to see how it works. I can wait for someone to buy the first copy. If you attempt to place an order and the feature doesn't work, please let me know by emailing me.

I priced the book at $20 including tax and shipping on my website. For those close by, I plan to hand deliver your personalized book.

I'm pretty sure the book will be priced at $16.95 elsewhere (PLUS tax and shipping). Taxes, shipping costs and PayPal processing may exceed $3.00 per transaction (for me) but I wanted to keep it simple. I don't want to calculate individual taxes and shipping costs on my website.

Buying the book directly from me is the only way to get a personalized copy. Not everyone will care about that, obviously. But I'm honored that my friends would ask me to write something personal in their book.

Tuesday, August 4, 2009

Cancer, God and Friends

I posted yesterday that Lillian started chemo yesterday, but she didn't. She had a "simulation" day to run through everything that would be happening when she actually does begin her treatments. I talked to Marian this morning and she said radiation will begin Friday and chemo on Monday. (I think I'm getting it straight.) Marian said the oncologist told Lillian that she's going to be pretty sick. He's going to treat her with strong stuff because he wants to kill any cancer that may be remaining. That's what she wants, too. I'm so glad Marian is there with her.

I was just watching the last few minutes of Oprah. The show was about receiving and living with a dreaded diagnosis. Cancer, HIV, multiple sclerosis. I think it was Fran Drescher who said that sometimes the best things come in the ugliest packages. Although she did not want to have cancer, good has come from it for her. Magic Johnson expressed similar feelings about living with HIV and Montel Williams spoke about his MS. Oprah said that every few minutes (I think it was possibly every two minutes, but I can't remember for sure) someone gets a cancer diagnosis. I personally know of quite a few and have made many friends who are battling cancer as a result of John's diagnosis and my online quest for knowledge and support.

No matter what it is, there is something very special about knowing someone else relates to what you're experiencing. For instance, nobody knows what it's like to lose a mother -- until you lose yours. When someone shares an unwanted diagnosis, you know they understand what it's like not only to receive the unwanted diagnosis, but they know what it's like to learn how to live with it and be thankful for every day. If anything, you become even more thankful for every day because you no longer take a day of life for granted (whether it's your own diagnosis or your loved one's).

I lost my paternal grandmother to cancer when I was ten years old (and she was forty-nine). I really would have liked to have known her as I grew up. My dad used to tell me that I had a lot of her traits. And I know I inherited her love of writing. I remember her smile and her laughter. I really believe I would have been close to her.

I lost my mom to colon cancer when I was twenty-eight (and she was forty-nine). We weren't really close before her diagnosis, but we became much closer while she was terminally ill. That made her loss more painful, but was also a great comfort for me in the years to come.

When John was diagnosed with CLL two years ago, I didn't think I could bear it. Ever since we met, I felt like I'd won the lottery. I never dreamed I would be so happily married. And then three and a half years into our fairytale marriage, he was diagnosed with an incurable cancer. I couldn't hardly believe it. Every day since the beginning of our relationship, I have thought "I can't believe how much I love you" every time I looked at him. After his diagnosis, every time I looked at him tears welled up in my eyes and I thought, "I cannot bear to lose you." It was so hard. And making it even harder was John not wanting to share this diagnosis with hardly anyone. He is so private. (I am so NOT private.) I became a recluse all summer. Sometimes I couldn't answer the phone because I knew the person calling would hear something wrong in my voice and I couldn't talk about it. So I couldn't talk. But I COULD talk to my online CLL friends; especially my CLL Christian Friends.

One day, while still in this emotionally devastated state, I was washing down my back porch and watering my flowers. I had learned so much about CLL and all the different prognostic markers. I spent just about every waking moment reading all I could about CLL so I could take care of John and help him make the best treatment decisions for his long term survival and best quality of life. This particular day, I was begging God to let him have all the good markers (which would mean a very benign CLL and perhaps twenty years treatment free). While I was crying and praying, I had one of those moments when I absolutely knew God spoke to my heart. He told me not to put my hope and my faith in a certain outcome, but to put my hope and faith in Him and in the promise that He was working all things for our good, "even this." I accepted that and took it to heart. He also impressed upon me that it was premature for me to grieve losing my husband. My husband had not only not been taken from me, he was still a very healthy man. He might outlive me. So how silly was it for me to waste our present by projecting myself into a future I did not think I could bear to face? God wasn't asking me to face that yet. He began to impress on my heart that there might be a day when I would grieve, but not now.

Not long after that, we went to the Mayo Clinic for a very thorough evaluation by an expert. We found out that John had three out of four good markers, but the one bad one he did have was the one that most predicts a shorter time to treatment and not the best prognosis (though with the other good markers, his prognosis is still expected to be good). When we got that last marker and it was not the one I had hoped for, I remembered what I had felt like God was saying to me the day on the patio.

Over the last couple of years, I have read about patients with all good markers who have not done nearly as well as expected. I have also read about patients with all the bad markers who have done much better than expected. And I realize that only God knows the answers to our futures. Not just those of us who are living with a diagnosis, but every single one of us. As much as I don't want John to have leukemia, I see that God is teaching us how to trust Him even more as we walk this new path together. I have learned to put CLL in my peripheral vision now and just live in today. I don't let myself project very often. And I don't think about CLL all the time. John was somehow able to do this right away. He took it in stride from Day One and just continued on with his life without missing a step.

Others living with a chronic illness call this the "new normal." In the first few weeks and months after diagnosis, I was on an emotional roller coaster and couldn't imagine life ever being normal again. But it is; only better. I remember telling a friend about the diagnosis and -- because she loves me so much -- she said, "It's not fair. This shouldn't be happening to you guys. After everything you've been through, you finally found each other. And it's just not fair that this has to happen to you." I told her that was not my struggle. I wasn't entitled to the wonderful marriage and wonderful husband I had. God didn't have to give me John in the first place. But He did and I am SO thankful for every day He gives us together. I'm also very thankful that I am by John's side to look out for him and be his very assertive patient advocate. (He is a passive patient and he needs a wife like me to help him in this CLL battle!)

When I began this post, I didn't know I was going to write all this. It just flows out of me when I start writing. What I did intend to say is how much I appreciate my friends and how much I appreciate that I am "allowed" to talk openly about his CLL now. In the beginning, John didn't want to talk about it to anyone. I had to convince him to tell his own family. He doesn't like people to worry about him. He doesn't like attention drawn to himself. He didn't want people to feel that they had to acknowledge it (I'm sorry to hear...). He didn't want anyone to view him any differently, or with sympathy. He just wanted his privacy. And I just needed to be able to admit that it wasn't any other day and I wasn't okay. But out of respect for him and his wishes, I shared with very few. Thankfully, he has let down his guard over the last couple of years and begun to share his CLL with more of his friends. And recently he told me he didn't care anymore who knew about it. He even said I could write about it on my blog.

I went to a pool party today with some of my girlfriends and I was sharing about his health issues with one of them. It felt so good to be able to talk about it. I can never hear too many times, "You all will be in my prayers." We are doing fine and I'm not in pieces like I first was. But it's so reassuring to know that our friends are there for us, praying for us.

I know that what Lillian has been through and what she is still going through is harder than anything John has gone through up to this point. I know how much it has to mean to her to know that she is loved and people care enough to pray for her recovery and her strength to endure this process. I just want all of you who read my blog to know that I do not take your concern, your love or your prayers for granted. I appreciate my friends so much.

It took me a little while to feel like I fit in with all these new friends in Murfreesboro. Everyone here seemed to go way back and it felt like everyone knew each other (except me) at first. But at some point I stopped feeling that way and began to feel like I was becoming a part of my new friends' lives. It absolutely amazes me how many wonderful friendships God has added to my life since I've been with John. And He continues to add new friends all the time. I have so much to be thankful for. God, you know that I am SO thankful for all you have done for me!

This is a picture of my very good friend, Anita, and me at the party today.

Monday, August 3, 2009

Update on Lillian

I haven't posted anything about Lillian in a while. She had to recover from surgery and have oral surgery to remove all of her teeth, then recover from that. This week (today in fact), she begins radiation and chemotherapy.

Marian and Bennie are taking turns being with Lillian in Reno. Marian came home at the end of June and Bennie arrived. Now Marian is there and Bennie is home in Indiana. I think Lillian told me that Marian is going to stay for the seven weeks that she will be having these treatments.

On July 27th, Lillian left a comment under an older post. I will share a portion of it here because everyone may not have seen it.

I can't do much, still weak...still very woozy. I have to force myself to eat. Calories help heal. I have a small infection going on near where the large one was. My doctor casually put me on an antibiotic when I visited his office and cleaned out a chunk of scab and other goo draining from the incision line. It's so sad and I hate pain but I have faith the Lord wants me here. I am all for that for many reasons and not for my own reasons either. I start chemo and radiation Aug 3rd....


I appreciate your prayers for Lillian. I appreciate your prayers for Marian and John, too.

John has a completely different kind of cancer. He has chronic lymphocytic leukemia. He was diagnosed in June of 2007. It's treatable but incurable. Thankfully, it's a chronic illness that he should be able to successfully treat for many years. But he will probably be facing chemotherapy this fall.

Marian also has CLL. Thankfully, she has shown no signs of progression thus far. She is completely asymptomatic. She says the only symptom she has possibly had is being extra tired at times. But she is 76 years old, very active, and even goes dancing on a regular basis. So I think being occasionally extra tired is just a tiny reminder that she's not as young as she once was. She amazes me. She is the youngest 76 year old woman I think I have ever known.

John is amazingly young for his age, as well. His overall health is excellent. But he is not asymptomatic for CLL. He has battled enlarged lymph nodes all throughout his body ever since diagnosis and, at times, severe fatigue. He has kept the nodes in check this past year with occasional steroid use. The long acting shots seem to work the best. But after about a month of relief, they start swelling again. And they can get large enough to cause a lot of discomfort. So Dr. Flinn has indicated several times that he thinks it would be best to go ahead with the kind of treatment that is likely to put him in a complete remission (chemo). How long the remission will last is never a certainty with CLL.

None of us has the promise of tomorrow, with or without a diagnosis. We don't even know what the day holds. I had to remind myself of that a lot after John was first diagnosed because I was so devastated. The expectation of living a healthy life to a ripe old age is an illusion that gets shattered when an "incurable" diagnosis presents itself. But there are also many people who are still living healthy lives who were once given a dismal prognosis. The only certainty in any of our situations is that we are in God's hands and He has ordained the number of our days. Rather than live in fear of an uncertain future, I am learning to more fully appreciate every day we've been given. Most nights I fall asleep thanking God for the day He has given us. He did not have to give me John to begin with. He did not have to give me the life He's given me. I can't imagine what my life would be like today if He hadn't been so gracious and merciful to me. I am so blessed and I am so thankful.

Sunday, August 2, 2009

A progress report on the book...

We have been out looking at houses most of the day and decided to stop by our own so John could mapquest a house he saw on the Internet. Any minute we will head out again for some more "roaming the boro" and then decide what we're doing for dinner (MY favorite part of the day). So I thought I would take just a minute and post an update.

This morning I finished reviewing my editor's proposed changes and questions from five more chapters. We have seven more chapters to go on the first review. Once he goes through all of my revisions and answers, we will do a final review before printing. I am trying to be SO meticulous about confirming every detail of my own memory. I know he probably thinks I'm stressing out over things that couldn't possibly even matter, but I can't help it.

Our pastor talked again last night about being a person of complete truth. He pointed out that a lot of people think telling the truth simply means not telling a one hundred and eighty degree falsehood from the truth. But that isn't God's definition. After this book is in print, I don't want to look back on any of it and think that I should have worded even a sentence differently. This is a conviction I feel over literally every sentence and even details that don't change the story one way or another.

I am going to set up an online shopping cart soon so people can pre-order the book.

John is ready to resume house hunting. Gotta go!