Thursday, December 31, 2009

A Decade of Challenges and Miracles

"God uses broken and imperfect people to challenge and inspire others. He utilizes our mistakes and our victories to shine a light on the path, so that others might follow. The transforming power of the gospel in the life of each person is a miracle. What He has done in my life is a miracle too."
Richard Stearns (President, World Vision U.S.)
Author of: The Hole in Our Gospel

I'm reading several books right now. I just finished reading From Jihad to Jesus by Jerry Rassamni. I am more than halfway through the latest biography of Lincoln by David Herbert Donald. I am well into Going Rogue by Sarah Palin, which I'm reading on the new Kindle John gave me for Christmas. And I am reading The Hole in Our Gospel by Richard Stearns.

Though the details of these books are different, all four are about broken and imperfect people God has used to challenge and inspire others through their mistakes and their victories. My very favorite kind of books to read, by the way. And my hope for the book I wrote this year, Breaking the Chains is that God might use my brokenness, my imperfection, my mistakes and my victories to challenge and inspire others as well (obviously on a much smaller scale).

I've read quite a few blogs tonight. For most of us, blog or no blog, New Year's Eve brings reflection. On this particular New Year's Eve, we are closing out not only a year but a decade. As I read the reflections of others, I couldn't help but think of how dramatically my life has changed -- and how I have grown -- over this decade.

~In the fall of 2000, at the age of forty, I became a college freshman.
~In August of 2002, to my absolute joy, my only son married an amazing young woman.
~In August of 2002, my first marriage ended.
~In May of 2003, I met John Howerton and my life would never be the same.
~In August of 2003, just after John and I began discussing marriage, we lost his 18-year-old daughter, Brittany, to a fatal asthma attack.
~In January of 2004, John and I were married.
~In May of 2004, I graduated with a BS in Family Relations in the same commencement where my son, Danny, received his MA in Education Administration.
~In June of 2004, my fourth niece, Nicole, was born healthy.
~In November of 2005, my first grandson, Joshua, was born healthy.
~In February of 2007, my second grandson, Andrew, was born healthy.
~In June of 2007, John was diagnosed with Chronic Lymphocytic Leukemia, a treatable but incurable blood cancer.
~From June through October of 2007, I battled depression as I tried to accept an unwelcome diagnosis and an uncertain future.
~In November of 2007, I developed a mild case of shingles and reflux (both, no doubt, brought on by a lot of internalized stress).
~In June of 2008, we tried a mild approach to treating John's constantly swelling lymph nodes (Rituxan, a MAB - not chemo). It was unsuccessful.
~In November of 2008, we went to Israel with a small group of church friends. It was the trip of a lifetime.
~In November of 2008, we lost an expected grandchild to miscarriage.
~In December of 2008, my maternal grandmother died suddenly after a fall (at the age of 91).
~In January of 2009, I began writing a book about my life and testimony.
~In February of 2009, my fifth nephew, Jackson, was born healthy.
~In May of 2009, I finished writing my book and turned fifty years old. John took me to Barbados to celebrate (because I started telling him five years ago that I wanted to do something really special for my fiftieth birthday - and he made sure we did).
~In June of 2009, I began my book's editing process.
~In September of 2009, John began a clinical trial (using chemo in combination with MABs) for his CLL.
~On October 20, 2009, I submitted my finished manuscript to Ingram for self-publishing.
~On November 10, 2009, I received my first shipment of 300 books and embarked upon the new world of "signing and shipping" books.
~On December 1, 2009, we found out that our "impending" grandchild, due in late April, will be a third boy.
~On December 19, 2009, I did my first book-signing at a local book store.
~As of December 31, 2009, I have less than thirty books left from my first printing, more books sold through Amazon than I expected, and four five-star reviews on Amazon.com.
~On December 31, 2009, John completed Round Five of chemo, with one final round to go the last week of January, 2010. And then, God willing, a very long remission will begin.

Tomorrow I may think of something I've left off the list. But at the moment, it looks pretty complete.

Clearly, my life reflects imperfection, brokenness, mistakes, heartaches, and many challenges. But more importantly, there is unmistakable joy, triumph, deliverance, spiritual growth and the ever present miracle of God's mercy at work in me; transforming me, sustaining me.

This New Year's Eve, we spent part of the afternoon with John hooked up to an IV. But thanks to the successful anti-nausea medications of Emend and the Sancuso Patch, he was able to eat a cheeseburger and fries at Pawbowsky's following treatment. Even though he felt really bad, he felt like he could eat (and did). After the first three rounds, his nausea was so overwhelming, he couldn't smell food, talk about food or even think about food without becoming ill. So I'm really thankful he has an appetite at all.

I went grocery shopping after we got home and bought a roast to make for dinner tomorrow, along with mashed potatoes, gravy, sauteed mushrooms, green beans and corn. I have every kind of chip and several varieties of frozen appetizers, tortellini, fresh sourdough bread (for beef melts), biscuits, crescent rolls, homemade Thousand Island dressing and salad fixings, ice cream, and a Publix coconut cream pie (which I have already tried and found rather disappointing).

I'm sure we won't consume my entire stockpile of munchies for the weekend. But I wanted to have options. I rented three movies, which I will probably wind up having to watch by myself (because something tells me there will be endless football on TV the next three days). And I also have my current reading material...the imperfect yet inspiring lives of Lincoln, Stearns and Palin.

Not a bad way to begin 2010 and a new decade.

Happy New Year, loved ones!

Monday, December 28, 2009

Round Five

We head to Nashville in the morning to begin Round five of John's treatment. Tuesday will be a long day of successive infusions (four separate drugs plus pre-meds and IV anti-nausea). Wednesday and Thursday he will only get two drugs, which require less time in the chair. Our New Year's will be spent very quietly this year. But in spite of plans and holidays interrupted by chronic illness and chemotherapy, I can't begin to express how thankful I am to God for allowing me to know the joy of such a wonderful marriage and a husband who loves me the way John does. I just love being in the same room with him, even if it's the treatment room. I'm very thankful I am able to be by his side through this ordeal. I tease him about this being one heck of a way to spend more time together.



One of the nurses at TN Oncology lives in Murfreesboro and she saw the article about my book (which I had never mentioned) in the newspaper last weekend. After clipping the article and taking it to the office, she told us they were all surprised to read that John and I had only been together since 2003. She said, "We thought you guys had been together forever." I told her it feels like we have been. We describe ourselves as high school sweethearts who just didn't meet until our forties.

I will be very appreciative of your prayers for my sweet husband this week. And a prayer or two for me would be welcomed too. I have such a hard time watching him go through all this. I think only God knows just how much John means to me.

Saturday, December 26, 2009

Friday, December 25, 2009

Christmas Wishes for Blessings!

As I have been getting ready to go to my mother-in-law's house and celebrate Christmas with John's family, I have been thinking of ALL my family. The simple truth for many of us is that we are not always close to every member of our families. Most families have strains, problems and relational issues. And Christmas brings many emotions to the surface; heartache as well as joy. I am well acquainted with both.

While my heart will always feel sadness for the relationships that are not "wonderful" in my life, I am overwhelmed with thankfulness for the ones that are! And each year brings new hope for healing and restoration. We never know what God has in store. Christmas should renew our hope for miracles as we celebrate the miracle of our Savior's birth.

This Christmas morning, I am wishing all my family and friends a wonderful, warm, merriest Christmas ever and God's richest blessings in the coming year!

Wednesday, December 23, 2009

Still have my joy...

It's been a good day. We went to get John's blood checked this morning and although his white count is still low, it is not as dangerously low as it was last week. After getting back from Nashville, John went to the dealership and I went grocery shopping. Danny, Rebecca and the boys arrived at our house at about 2:00. We were supposed to celebrate Christmas with them tonight. We were going to have tacos and open presents. They were going to spend the night.

After hugs and kisses, we admired Frosty the Snowman in the hallway and then I offered the boys an assortment of decorated cookies from Julia's Bakery. Andrew chose a snowman and Joshua said, "I'll have one a little later, Grandma Shari." That should have been the big red flag. What four-year-old turns down a cookie? Five minutes later he started to choke (or so we thought), Danny said, "Joshua, are you okay?" And he threw up out of nowhere. Party over. We were all looking forward to the evening and so disappointed, but we knew they would not be staying.

With John in the middle of chemo, he is far more susceptible to infection. His immune system is compromised and his body cannot fight infection as it normally would. Rebecca cleaned up so I would not be more exposed. We opened Christmas presents quickly. I snapped a few pictures. And then we said our good-byes.

I could feel my emotions very close to the surface, but I refused to be sad. I focused on how glad I was that I got to see the boys open their presents, even if they didn't get to stay all night. I kept my smile and told Danny and Rebecca that even though chemo is interrupting Christmas this year, at least it will be over before the new baby comes in April. John should be feeling much better by then and hopefully things will be back to normal.

Andrew was really engrossed in one of his toys and Rebecca had told him he couldn't open it and take the pieces out until they got home. So when Rebecca told him they were going home, he took it well. He came over, gave me a hug, and said, "We have to go to our house. Don't cry, Grandma Shari." It was so cute.

As they drove away, I could have cried. There were tears in my eyes. But I forced myself to think of how thankful I was that I got to see them, I got to watch them open their presents, and I got to spend a little quality time with their mommy and daddy. Thank goodness Poppy John was at work and not exposed. We have many more Christmases to look forward to in the future. And I quickly recovered.

I drove to the store and bought some Lysol so I could disinfect the carpet, the couch and the air before John got home. Then I made dinner and baked Romance Cookies.

Now that I finally have my Christmas spirit, I am not about to lose it.

Tuesday, December 22, 2009

Ready for Christmas

I guess I am "officially" ready now. My Christmas shopping is done. The gifts are wrapped and under the tree. It just occurred to me that I can clear my wrapping paraphenalia off the kitchen table and put it back in the guest room closet now. I wrapped the last few purchases tonight before dinner. I'm done for another year.

We go to Nashville in the morning to get John's counts checked. Last week they had nose-dived again. So he is having to take an additional (stronger) antibiotic until his WBC rebounds. Last time his white count and neutrophils had come back to almost normal by the second week after treatment. But Dr. Flinn said they might not come back as quickly this time because of the cumulative toxicity. I'm hoping he is out of the danger zone by tomorrow so we can breathe a little easier about being around kids and going to church on Christmas Eve, which is our personal Christmas tradition. We love the Candlelight Christmas Eve service and this year is extra special because it will be the first service in our new sanctuary.

The kids were hit with a virus over the weekend and I wondered if we would even be able to see them this week. But at this point it looks like everyone has fully recovered. I have learned, however, to wait until the last minute to grocery shop. Last time I was planning to make a big Mexican feast, Andrew started running a fever and we had to cancel our plans at the last minute. The fever came on just after I had bought all the ingredients for a big dinner, of course. When a person's immune system is compromised by chemotherapy, they cannot take any unnecessary chances with exposing themself to infection. I say unnecessary chances because you can't avoid any chance of being exposed if you have a job, if you go into a grocery store, etc. But so far, John has had no infections; not even a cold. And I am so thankful for that.

I have had a hard time feeling the "ho ho ho" of Christmas this year. I know it is mostly stress. Although chemotherapy is not nearly as hard on me as it is on John, I have to admit that I have not felt like myself since he began treatment in September. Everything that I would normally enjoy just feels like another form of stress to me this year. I think the holidays often accentuate whatever is not just right in our lives. And I have found myself frequently focusing on pain, fear and anxiety this Christmas season.

One thing I do know is that when I see the sweet little faces of my grandsons tomorrow afternoon, I will instantly rediscover the "ho ho ho" of Christmas. Just picturing them walking through the door makes me smile. But no matter what happens tomorrow -- even if some unforeseen circumstance should prevent me from seeing those sweet little faces -- I am determining in my heart right now to allow the joy of Christmas and the joy I have in Christ to overwhelm every other aspect of my life, including all my fears and anxieties for the future.

It's amazing. I feel strength simply from typing those words.

Sunday, December 20, 2009

Book Signing

I'm sitting here watching the Titans with John and thought I would share some details about the book signing yesterday.

I have to be honest that I was not looking forward to it. I have never written a book or done a book signing. I'm an unknown author. I pictured myself sitting at a table all alone, not one person buying a book or making eye contact with me. I knew I had to do it and I couldn't wait to get it behind me. I told John I was nervous and he told me later that he had prayed for me all day.

This book is so much more than a book for me. It's my life. It's my testimony. It is a deeply personal journey. My heart is on the pages. Although I am naturally an open person and I don't mind being vulnerable, by putting myself out there as I have in this book, I'm vulnerable in a way I have never experienced before. And not just vulnerable as far as the information I share about myself (which is not all pretty). The most excruciating vulnerability in this book is connected to the reactions of readers; because I am intertwined with this book in ways that I could not possibly be intertwined had I written a work of fiction. I often translate a person's perception of the book or its content as their perception of me. This extends to what I included in the book as well as what I did not. Some people think it is horrible that I wrote this book and others think I was kind. Translation in Shari's psyche: Some people think I am a horrible person and some people think I am a kind person. (Except when someone says I was too kind and then that becomes a negative, too.)

Although the reactions I personalize the most are from people who know me, I still felt very vulnerable going into this book signing. I knew it would be hard not to personalize a disappointing response. And I did not go with great expectations. I went thinking; this could wind up being very embarrassing.

I arrived a few minutes early and sat down at the table displaying my books and a flyer. The staff at Hastings were so helpful and warm. Tony, the store manager, told me people had already been inquiring about the book and several copies had been sold. Within five minutes of sitting down, a woman approached the table, picked up a book and said she had come to the store to buy it and have me sign it. She told me that when she was made aware of the book her first thought was, "Someone has written my story."

This got things off to such a positive start that I relaxed and felt good about being there. I was seated at a table just inside the entrance where customers had to walk past me as they entered the store. I was amused at how many people went out of their way not to make eye contact. This is just human nature. We do it even when we see sweet little girls selling Girl Scout cookies outside the grocery store. If we are in a hurry or we don't want to be engaged in conversation (or an attempt to sell us something), we pretend we don't see people. I was not even tempted to personalize this. It's something I have done so many times.

One older gentleman handled the awkwardness with a joke. As he walked past the table, he smiled at me and said, "Would you like to sign a book for me?" I said, "I would love to sign a book for you." And he said, with a chuckle, "Well, you can't because I don't have one." He cracked himself up, and this cracked me up too. I wished him a Merry Christmas and really meant it.

And then an angel walked in the door. A new friend who shares my roots made quite a drive just to support me at the book signing. This is not a person I grew up with, though. I'm actually a little older than her dad. We were never peers or even friends in CGT because of our age difference. And I left the church before she did. But the book has been therapeutic for her and has facilitated her in sharing her heart with loved ones and feeling more understood than she once would have ever hoped for. It brought tears to my eyes as I listened. While this kind of dialogue and understanding with loved ones may not happen for me as a result of the book, it is profoundly rewarding for me that it is happening for someone else. I told her that whenever I am struggling with the consequence of personal rejection for writing the book, I will think of her and feel joy.

Another friend also popped in to say hi and show support shortly after the event began. And then a little later John came to check on me and see how things were going. By this time, I had been approached by a number of customers and engaged in conversation. I had sold several books and was feeling energized by the day. I stayed a few extra minutes to sign the remaining copies before leaving and wound up selling two additional books.

I then came home to an email from the rep at Barnes & Noble letting me know that she had ordered copies to carry in the Murfreesboro store and would also like me to do a book signing for them, as well. She told me they were planning a local author event in February and invited me to be a part of it.

I felt inspired and compelled all year long to write and publish my testimony. But I have not felt any real drive to promote the book. Because of the intertwining of myself and the book that I have already described, promoting the book feels like self-promotion to me. And the last thing I have any desire to promote is myself. If God has a plan or purpose for the book, He will have to open the doors because I can't picture myself knocking on them. I have been anxious at every turn. I am a person who is easily overwhelmed with self-doubt. But although there have been challenges and some painful repercussions of sharing my story, the rewards have already far outweighed them.

As my friend described to me how the book is bringing greater understanding for her own feelings because of the communication it has provoked, I realized that I could not be happier if that were happening for me personally.

Friday, December 18, 2009

Dancing in the Rain

I saw this quote as I was Christmas shopping this week...

"Life is not about learning to survive the storm, but rather learning how to dance in the rain." (Author Unknown)

Since this has been a challenging Christmas season for me, I was even more drawn to the quote. I bought a small picture frame with the quote on it and I plan to put a picture of John and me in it.

The last two years have brought more than their share of stress. John was diagnosed with CLL in 2007. This September, he began the first of six rounds of chemotherapy, which will hopefully put him in remission for a long time. Going through chemo isn't easy on the patient or the spouse. We are both feeling the wear and tear of illness. John feels it physically and emotionally. My wear and tear is mainly emotional. But neither of us has inflicted any wear and tear on the other. And that is something to be thankful for. Stress can (and often does) bring out the worst in people. Of course, as the spouse, I want to be the most loving, nurturing and supportive partner I can possibly be. But what amazes me is how loving, nurturing and supportive my patient is to me.

As you might imagine, this won't go down in history as the most festive December of our lives. There are days when it feels like we are just surviving the storm. But today I danced a little in the rain.

I have been sleep deprived two nights in a row. I finally went back to bed at 6:00 this morning and slept until 8:30. But I was still so tired. I don't know about you, but when I'm feeling stress and not sleeping, it affects my emotions. And today was no exception. I was feeling so blue as I started some laundry and sipped a cup of coffee. I was definitely just surviving the storm.

And then the phone rang. It was John calling to check on me and tell me that he was considering leaving early and spending the afternoon with me. He knew I needed to do more shopping and he asked if I wanted him to go with me. I said, "You have no idea how much I would like that."

We didn't accomplish anything; not a single purchase. But we strolled the mall, had a nice dinner out and I got to talk to my best friend about some of the things that were causing me anxiety (which I had been trying to keep to myself). John has such a soothing way of helping me put things in their proper perspective.

On the way home, I noticed that I was feeling better and I told John, "You have no idea how much I needed this today." He said he did. And he reminded me that the worst thing I can do is internalize all my emotions because I am a communicator. I have to talk to feel better. He knows me well and, even better, he lets me be who I am. I am so thankful for my husband. Today he was the caregiver.

And I have survived another storm to once again dance in the rain.

Sleepless Nights

I have been awake since around 2:00 am. This is the second night in a row that I haven't slept. I was so tired all day yesterday, I was just sure I would sleep right through the night. I know I am so fortunate that this is not the norm for me. John says he never gets a solid night's sleep and most every night he lies awake unable to sleep, or wakes up every hour, on the hour. My interrupted sleep is sporadic and not a pattern; it seems to happen without rhyme or reason. However, I notice that on those nights when I can't sleep, I develop anxiety from not being able to go back to sleep, and then I of course have to attach that anxiety to thoughts.

The first thoughts I attached to my anxiety this early morning were connected to my remaining shopping list. Sometimes there are persons you really want to come up with something special for, but can't seem to think of a single good idea. I'm feeling stress not only about figuring out a gift, but frustration that I am allowing gift buying to be a stress in my life instead of an enjoyable pleasure.

The second thought to attack my brain had to do with a comment, which I absolutely know was not intended to hurt me but, nevertheless, triggered anxiety for the rest of the day and evening because of my perception that this person's feelings were not 100% positive toward me. Whenever I come face to face with my insecurity and my inability to take disapproval in stride, I feel frustrated with myself on many levels. While I don't ever want to become insensitive to the feelings of others, I recognize that I lean toward unhealthy co-dependence and being overly concerned about people's agreement (or disagreement) with my choices. I don't want to go through life constantly seeking affirmation and approval. The main reason I don't want to do this is because it's self-absorbed.

And these are just some of the things my mind wrestles with in the middle of the night.

It is now a little after 6:00 and I have been awake since 2:00. I'm thinking about all the things I need to do and how much I need sleep. I'm thinking that I managed to get in the Christmas spirit for one whole day...maybe I can do it again!

Wednesday, December 16, 2009

Book Article

Howerton pens book...

I think the writer did a nice job of condensing a lengthy interview into a concise article. I don't think she has had a chance to read the whole book yet, though. The article states that I never questioned the rules and expectations placed on me and my family. And I tried to convey in the book that I did have many questions throughout my life. It just took me a very long time to openly challenge what I had been taught and confront the fears that had been instilled in me.

This is the first time I have ever been interviewed for a newspaper article. I knew it would have to be a brief synopsis of our conversation. It was interesting to read the points that most impressed the interviewer. I hope the article causes people to want to read the book and maybe even buy it for someone as a Christmas gift!

Speaking of Christmas gifts, I knocked out the majority of my shopping today! I cannot believe how much I accomplished in one day. I met John for dinner and then stopped at two additional stores before coming home (at 8:30). I still have a couple of things to pick up, but soon I will be moving from my shopping list to the task of wrapping. And that is a very good feeling. What really feels good is that I found everything I was looking for and I am very happy with all of my purchases.

Fun Night!

Our four-year-old grandson, Joshua, was a tree in the Mustard Seed Choir last night. He is standing next to his best buddy...

Joshua having fun after the program...

Andrew hamming it up for Grandma Shari...

The whole family...


I think you can tell (I can) by this picture that it was a major effort for John to go to a Christmas program last night. (Although he looks good considering what he's going through.) But he wanted to go with me to Joshua's program and it meant the world to me to have him there.

Andrew was an affectionate angel last night. He crawled all over both of us, continually pressed his cheek against mine, gave me kisses unasked, looked up at me in irresistible sweetness and said, "I love you." He ran to every grandparent (and there are several of us) showing equal enthusiasm for every single one. It was absolutely adorable to watch him look up at his Granddaddy Tom like he was just thrilled to see him and Grandma Mel. He pointed out Poppy John to Grandma Mel, saying, "That's Poppy John." Melanie said, "Oh, that's John?" And Andrew said, "No, that's POPPY John." A few minutes later he was stroking John's sweater vest and looking at him as if to say, I'm SO glad to see you. It melts my heart just reflecting on it. This phase Andrew is in is so precious, I want to savor it!

Joshua wasn't quite as much of a cuddle bug last night because of the excitement of the evening, but we did get some hugs and kisses (had to ask for his). That kid can talk and talk and talk. I loved watching him go from person to person making conversation.

I think I am now officially in the mood to Christmas shop.

Monday, December 14, 2009

Ridin' the Coaster to the top...

Just thought I would let my faithful readers know that I feel so much better tonight than I did earlier today. I just have those moments and for some reason it helps me to write it down and share it with someone who cares. One of my dearest friends, Karen, called me after reading my blog today and we just talked. I was glad she had already read my ramblings because then I didn't have to whine (as much) on the phone to her. But she is also overwhelmed with stress (just different from mine) and we commiserated about our collective lack of festive moods this year.

I got practically nothing accomplished the first half of the day. But about 2:00 I worked up the energy to get on my exercise bike. This afternoon I made flyers for Hastings to promote the book signing and dropped them off. And I put another book in the mail to someone I don't know (I love getting book orders from people who don't know me because that means someone has suggested they read it).

My sweet husband came home early and announced he was going to go to the Christmas program with me. It took me about ten minutes to realize I suddenly didn't care about going at all. I knew he was doing it for me. So I asked, "Now that you are home and sitting comfortably on the couch, would you just love to stay in for the rest of the evening and not go anywhere?" He looked at me like he was trying to decide what he SHOULD say in response. I told him I really didn't care if we missed the concert and I would be just as content to stay home together. He said, "You mean you're not going to go without me?" And I said, "No. And I promise I don't care." His hesitation told me all I needed to know. I said, "I appreciate you wanting to make me happy, but I don't want you to do this for me. I really think we should stay home tonight." And so we did. And it's been a lovely evening. Except that I ate a plate of nachos with shredded beef and guacamole -- and I am mad at myself for that. But otherwise, I can't believe how much better I feel than I did this morning.

After our conversation about staying home, John hugged me and said, "Thank you for taking such good care of me." Those words never fail to put a big old smile on my face.

The Christmas Spirit: A Transformed Heart

Tonight I will go to our church Christmas program, which I know I will enjoy. And tomorrow night I will go see my grandson, Joshua, in his first little pre-school Christmas program. Under normal circumstances, I would be anticipating both of these events with enthusiasm, excitement and joy. But this year I have to choose between doing these "fun" things without John or not doing them at all. Even if it's something I really want to do, having to do it alone dampens my enthusiasm for any event.

In addition to John having to avoid as many situations as possible where he could be infected with something because of his compromised immune system, he just doesn't feel like going anywhere in the evenings. He's so tired at night that he can't stay awake sitting on the couch, but then he can't sleep through the night. So he's always tired; even in the mornings. He had another really rough night last night. He is struggling with nerves and anxiety, worrying about things he really can't control. I would imagine that going through chemo is a part of everything he's experiencing right now, including the emotional stress.

John hates to hear himself complain so much that if he even tells me how he really feels, he thinks he's complaining. He would much rather say, "I'm fine" than elaborate on how he's really feeling. For a while I gave him a hard time for always saying he was doing well when I knew how bad he felt. I told him his friends were asking because they really wanted to know. But as time goes on, I am beginning to understand better why he would rather just pretend to feel fine. Even I am getting tired of hearing myself tell people he doesn't ever feel good. There's nothing anybody can do. And when a friend asks, "Is John feeling better?" with obvious anticipation of a positive response in their voice, I almost feel like I am disappointing them to tell the truth. I find myself tempted more and more to tell them what I think they want to hear, or simply say, "He's fine."

I talk to John on the phone many times throughout the day and I frequently ask him how he's feeling. I understood the other day when he admitted that he almost hates to be asked that question because unless he lies, he feels like he's just continually whining. Since starting chemo, I also know that he doesn't feel very social or have the energy to interact socially. So when he's not working, he just wants to be home with me. Therefore, we may not make it to anything we've been invited to this Christmas. And although I'm disappointed not to be enjoying my friends and all the social aspects of the season, I just don't want to put any pressure on John to do things. I don't want him to feel like he's disappointing me. Because I don't feel that way.

I must admit that I do feel kind of left out and disappointed not to be enjoying all the festivity of Christmas. A part of me wants to do all the things we would normally be doing. But another part of me doesn't want to do anything or go anywhere; especially if it means doing things and going places without my husband. I can certainly do some of these things without John, (and he would be the first to encourage me) but it's not the same going without him. Not to mention, I don't want to leave him home by himself. My strongest instinct right now is simply to be with John as much as I can. I realize that it's not so much the activities that I'm missing; I'm missing doing these normal things with John. But I would prefer to be home doing nothing with him than to be doing something fun and exciting without him.

In the middle of all this emotion, I'm glad I know that the true spirit of Christmas isn't about any of the things I'm missing out on this year. I'm thankful that I can have peace and joy in my heart even in the middle of stress and a heart that is sometimes heavy. I can feel melancholy and thankful at the very same time because, even when times are hard, I know that God has gotten me through hard times before and He will again. He is always there. I know He loves us and somehow (whether I can understand the mechanics of it or not) He is working all things for our good.

I'm thankful that the things I have been through in life have not robbed me of my faith in God or His goodness. I trust Him today more than I ever have, even though everything in my life is not the way I would choose for it to be. I feel God's presence and I see the evidence of His mercy in my life. I am more keenly aware of His sovereignty than I once was. At one time, I wasn't sure my life's details were even on God's radar. And then it seemed as though He set out to prove me wrong. Because of what He has already done in my life, trusting Him has become a much more natural thing. I don't mean to imply that I don't still wrestle with circumstances or fear and anxiety. I do. But I consciously ponder, in every situation, how God can ultimately be glorified through the circumstances of my life, including suffering. I have not always thought about my life in those terms. This change in my view of life represents a transformation of my heart that only God can perform. And that transformation is possible because He sent His Son into the world.

Sunday, December 13, 2009

Post Article Miscommunication

I got an email from the writer of the Post article Friday saying she had just submitted her piece and was able to add the book signing to it. She told me to expect it in today's paper.

It's not there. I just got an email from the editor explaining that originally it was going to run next Sunday (not this one), but he was trying to fit it in this weekend after he found out about the upcoming book signing. At the last minute, space was a problem. So the story will be in print next Sunday, but he intends to promote the book signing online this week. When something appears online, I will post a link to it on my blog. The Murfreesboro Post is a Sunday only paper (print edition), but has online articles and updates throughout the week.

I'm a little disappointed (since I told so many friends to look for the article). However, in the grand scheme of things, it's a very minor disappointment. I greatly appreciate the Post's promotion of the book no matter when or where the story appears.

Saturday, December 12, 2009

It's decorated!



I got the tree up today. I was tempted to skip it altogether this year, but I'm glad I didn't (now that it's up).

I think because of John's treatment I am just not as into Christmas as I normally would be. It doesn't really seem like Christmas to me this year. And I know it's primarily because of what we are going through. The thing is, I am not down. I feel good. I don't feel like I want to skip Christmas. I just feel like I want to skip all the "work" of Christmas. And I think it's because I'm mentally and emotionally tired. A tree did not feel important. We certainly won't be doing any entertaining this year. John and I both have said to each other, "It's not important to me if it's not important to you."

We hope the kids will be able to come over to have dinner and open presents the week of Christmas, but if anybody is even fighting a cold, we will have to cancel plans to be together. I think that was partly why I had a hard time getting motivated. I have had this coping mechanism most of my life that tells me I will be less disappointed if I don't have any expectations. So I have already tried to resign myself, mentally and emotionally, to not being able to have Christmas with the kids in order to prepare myself for that if it happens. But I couldn't imagine not having a tree up if they do come, so I told John yesterday that if he felt like carrying the tree down from the attic, I would get it decorated today. He did. I did. And I have to admit that it was well worth the effort.

The problem with my coping mechanism is that by expecting NOT to have Christmas, I am completely unmotivated to prepare FOR having Christmas. I have not done any shopping; not even online. I don't know what I'm getting anyone. And John has another round of chemo on the 29th, 30th and 31st. So my thoughts are distracted by my concerns for him and how he's feeling day to day. I guess it's no wonder I feel overwhelmed.

And then there's the book I have worked on all year and self-published just thirty short days ago...

I haven't done much of anything to promote my book other than talk about it. But this week I was contacted by our local paper, The Murfreesboro Post, and informed that they were planning to do an article this Sunday on my book. Thursday afternoon I met with the lovely young woman writing the piece, Christen Manger. I have been meaning to stop in a local book store all month to see if they would be interested in carrying the book, but it never has been convenient. So I've procrastinated. But knowing this article was going to be in the paper this weekend, I decided to stop procrastinating.

I went in Hastings yesterday to inquire about their interest in carrying the book. I think part of the reason I had procrastinated was because I expected red tape. I just assumed the person I would need to speak with wouldn't be there, I'd have to jump through some hoops, make more than one attempt, etc. I was lacking in drive to push the book. But they were not only helpful and positive; they were enthusiastic about carrying the book. They took all the copies I had in the back of my vehicle and I signed an agreement. I was also offered the opportunity to do a book signing next Saturday (the 19th), which should be fun.

My own perosnal first printing was 300 books and I'm down to about fifty copies. Amazon has been selling books, too. I have three five star reviews and several nice comments on my website's GUESTBOOK. These are just a fraction of the comments I have received privately via email and Facebook. I have even spoken to several readers on the telephone. I would love to be able to share comments from the letters I have received. But I understand and appreciate why most people would rather share their feelings and opinions privately. Don't worry. Anything you have shared with me privately will remain private. Your encouragement and support has been such a blessing! I look forward to sharing a link to the Post article tomorrow.

And maybe now that my tree is up I can get fully into the Christmas spirit for the next couple of weeks!

Wednesday, December 9, 2009

Good News: No kidney stone detected!

We went to see another of our favorite doctors today (Dr. Cleveland) just to be on the safe side and make sure John was not developing another kidney stone "event." For the last couple of weeks he has had pain off and on in the right side of his back. And he says it feels exactly the same as the pain he had for several weeks leading up to the terrible pain of the stone trying to pass from the kidney to the bladder. We cannot take any chances with John passing a stone because he only has one kidney (as most of you are fully aware by now) and the one he's got has a tube that has a narrowing (genetic) that would probably prevent him from ever passing one completely. Last time he was 100% blocked and had to be rushed to outpatient surgery. We certainly didn't want that to happen again. So we went and had an ultrasound done. It showed no stone and no inflammation or swelling of the kidney. He also has none of the other symptoms associated with a stone. So we are just going to assume at this point it may be body pain associated with the chemo.

John's mind is not completely put at ease because he says it feels exactly the same as last time. And Dr. Cleveland said sometimes a stone is not detectable. Sometimes they are very difficult to detect. It could be there and not be showing up, but there is no evidence of one and he did not want to put John through a bunch of extensive tests or do anything invasive unnecessarily. So if any other symptoms develop or the pain worsens, we'll just go back for another visit. But it looks like he is fine for now.

I love Dr. Cleveland. He always makes me feel so smart. When John was about to go in for his kidney stone procedure, I was asking all kinds of questions and Dr. Cleveland thought I worked in the medical field. I said, "No, I just try to take good care of my husband and learn all I can so I can look out for him." We had already told him how we met (match.com) and he just looked at John and said, "You really met her on the Internet?" (We had told him because one of his kids was dating someone from the Internet and he was worried; we were trying to put his mind at ease that sometimes it's a great way to meet!)

Then today Dr. Cleveland asked if we knew what drugs John was getting in his treatment. I rattled off, "A combination of Fludarabine, Cyclophosphamide, and Rituxan...oh yeah, and Lumiliximab, which is the experimental drug they are studying in his clinical trial. It's a monoclonal antibody like Rituxan." He looked at me and said, "You like saying that, don't you?" (I think he meant Lumiliximab because it sounds so silly; like a word right out of Dr. Seuss.) Although I would have preferred never to have heard of any of these drugs, I laughed and said, "Uhuh, and I can even spell all of them. Are you impressed?" He laughed, looked at John, shook his head and said, "The Internet, huh?"

Of course, John and I both know that the Internet was just a tool in God's hands. He knew I'd be doing online shopping and He made sure John was there so I could find him.

Tuesday, December 8, 2009

Two more rounds to go!

It's funny what can be exciting in our lives as we get older. Right now I am most excited at the thought of John having only two more rounds of chemo ahead of him. We got through round four this past week. The weekend was still tough for him, but the new anti-nausea med (Emend) took the edge off the really severe nausea throughout the entire weekend. We were thankful for that. Round five is scheduled for the last three days of December. (Happy New Year!)

John has felt bad for so long, I get excited just thinking about him being in remission and the possibility of him feeling good again. Feeling normal is something we all take for granted. It's hard for me to remember the last time John felt good. It's definitely been a while. And seeing him feel so bad certainly has an emotional impact on me as well. The last few days, he has had some pain in his back that he says feels a lot like what he experienced just prior to discovering he had a kidney stone. He has a doctor's appointment Wednesday afternoon to check on that. Please pray that whatever it is, it's not another kidney stone. It would be dangerous for him to have to have a procedure and spend time in the hospital right now when his immune system is so severely compromised.

I haven't had much energy to post on my blog lately. I don't have a lot of energy for anything, to be honest. I think I'm mentally and emotionally drained. My tree is not up yet and I really don't care. I haven't even begun to Christmas shop. I'm not feeling down or bah-humbug at all. I'm just kind of blah. I think it has everything to do with John's chemo. Not only is there a lot of stress and worry as the caregiver, but it takes a lot out of you just watching the person you love go through something so challenging. I believe he is tolerating the treatment well and there is every reason to believe he will get a good response. Nevertheless, there are plenty of hard days. Sometimes I don't post because I don't want to sound like I'm whining.

Life has been busy and my days are full. I don't feel like I'm accomplishing very much. However, I am trying to make time for friends. My calendar was laying open on the kitchen counter yesterday. John looked at it and said, "I see your social calendar is full this week, darling." Yep.

Other than volunteering at the church on Monday and Thursday, the events on my calendar are "Lunch with..." and "Coffee with...." Today I met my aunt and some of the ladies from her prayer group in Hopkinsville for a two hour lunch. Tomorrow is an early lunch with one friend and afternoon coffee with another. Friday's entry is another lunch. I am so thankful for my friends. I don't know what I'd do without them. It's a real blessing when there aren't enough free days in the month to spend time with all of your closest friends. I am very thankful.

It was really special being with my aunt's prayer group again today. These are the same ladies who prayed for me back in January and greatly inspired me to start writing my book. Today they anointed me with oil and prayed for me again - right there in the booth at O'Charley's. I couldn't help but think how cool it was that none of us felt the slightest bit of discomfort with that. There was a time in my life when I would not have been as comfortable with that as I am today. These women are such a blessing and I felt strength from their prayer, as well as just being with them.

God has been so good to me. Yes, John and I are going through a trying time in our lives. I never would have anticipated that just six short years into our marriage, one of us would have cancer and be going through chemotherapy. I wish we weren't. But God is right there beside us and He takes care of us in ways we don't even realize. I'm tired and lacking in energy, but I have joy and peace in my heart. I am sometimes afraid, but in the next moment, God reminds me that I can trust Him and I have nothing to fear.

Friday, December 4, 2009

Two thumbs up for Emend

It occurred to me that I should check in and let our friends know how Johnny-boy is doing. Although he is definitely feeling the effect of his fourth round of chemo and has spent the whole day in bed, he has so far not had the debilitating nausea that he has experienced every previous round. The doctor gave him a drug called Emend this time that is specifically for delayed onset nausea and it's helping more than anything else we've tried. He is also wearing the Sancuso Patch in addition to the Emend, but the patch didn't eliminate the nausea before. So I'm pretty sure it's the Emend that has made the difference.

I knew the minute we both woke up this morning that he wasn't as severely sick as all the other times simply by looking at him, and the fact that he was talking to me. He tentatively told me he thought it was making a difference. And he said that the thought of food did not make him feel sick like before. Naturally, I assumed that if the thought of food did not nauseate him, then he was going to eat. And he still didn't feel like eating anything all day. But it was because food didn't sound good, not because the mere thought of it made him feel like throwing up. Big difference. He had a little mild nausea this afternoon, but it was minor.

He finally did eat a grilled cheese tonight for dinner. Which isn't much. But I've been told not to worry about a few missed calories the week of chemo.

We are both a little concerned about his lymph nodes. They are definitely still there even after four rounds of treatment. According to the ct scan, most of them have shrunk about 50% at the halfway mark. I know that Dr. Flinn expected more of a response than 50% at this point. But he did say that he has a patient whose nodes continued to shrink for an entire year following her last treatment. This is the thing with CLL; it's very individual. Everybody progresses and responds to treatment individually. And there is quite a range in lengths of remission. I've read about patients getting very long remissions of up to seven or eight years. And I've heard of patients coming out of remission in a year. A friend's husband whose CLL has behaved similarly to John's is one year out of treatment and his nodes are already growing again. It's hard not to think about those possibilities.

When I took John some ginger ale this afternoon, his neck looked like the nodes were starting to get larger again and it really worried me. I didn't say anything because I didn't want to cause any anxiety for John. A little later, he got up and came in the kitchen and they didn't look as swollen to me when he was standing. So I thought maybe I had just imagined that they were sticking out. But then a little later, he looked in the mirror and said they looked bigger to him. I told him we are both probably so focused on his nodes that we see the most minor change and feel anxiety. But the most important thing is they have responded and they may continue to respond favorably for months following the end of treatment. It isn't going to do either of us any good to project into possible outcomes. We just can't let ourselves go there. However, that is much easier said than done.

I don't want to give the impression that either of us is obsessing. We know we are in God's hands and we're trying to keep our thoughts positive. But we are human.

Our prayers for the right anti-nausea drug have been answered. Please pray with me that John's nodes will fully respond to this treatment. Dr. Flinn said that if John did not have a good response or he came out of remission quickly, we would need to discuss bone marrow/stem cell transplant. There are a lot of concerns that go along with transplant, even though there is the potential for very good results. We would obviously much prefer a long remission before having to think about that option.

Okay, enough about the possibilities of not so great results. I'm going to reject those fears and regain my positive attitude. I just wanted you to know how to pray for us. I can't tell you what it means to me to know you are praying.

Wednesday, December 2, 2009

Passing the halfway mark...

Day One of Round Four is behind us. This means we are officially past the halfway mark in John's six rounds of chemotherapy.

The first day of each round is long. Today and tomorrow's infusions will take less than two hours. But on the first day, we arrive at 8:00 am, have blood taken, see the doctor before beginning treatment, and then settle in for a full day of consecutive infusions. John receives IV pre-meds, IV anti-nausea meds, two monocloncal antibodies (Rituxan, then the experimental drug, Lumiliximab), followed by the two chemotherapy agents (Fludarabine and Cytoxan). The monoclonals have to be infused slowly to avoid the potential side effects. But the chemo drugs don't take long at all. The second and third days are so much shorter. John goes to work in the morning and gets his infusion in the late afternoon. The two chemo drugs can be infused in about an hour, although we are always there a couple of hours because it takes time to have his blood checked and get the IV started.

John has tried leaving the needle in all three days. I think they call this an IV cath (it's not the same as a port). They tape it up and then you don't have to be stuck three separate times. However, John has found this to be more annoying than just being re-stuck. You have to wrap your arm in plastic wrap when you shower, it's bothersome trying to sleep, etc. So he opted not to do that again.

John is tolerating the chemo well so far. Two weeks ago he was neutropenic (dangerously low neutrophils). But by yesterday his blood had come back to normal levels. Of course, by the end of this week, they will be low again. That's how this works. We are hoping that they will rebound appropriately following the next two rounds and there will be no delays in scheduled treatments. If we stay on schedule, his last round will be the last week of January.

So far, after each round, John has had severe nausea and usually spends the weekend (Friday, Saturday and Sunday) in bed. We are trying a drug this time called Emend, which is specifically for delayed onset nausea. (John is very tired during treatment, but he doesn't get sick until the day after his last dose of chemo.) He is also wearing an anti-nausea patch. I'm really hoping he won't be as sick this time as the last times. I'll let you know.

When we got his blood results yesterday, I told him they were really, really good. He was tolerating the chemo very well. He said he wished HE was holding up (as far as how he feels) as well as his numbers appear to be. He said, "I really thought I would hold up better than I have." I felt like he was somehow disappointed in himself and I reminded him of how hard these treatments are on his body. I think he's pushed through remarkably well.

I don't think we can have any idea what it's like to take chemo until we experience it. And every body is different. We respond differently. I don't know anybody any tougher than John when it comes to pain. But this has knocked him for a loop. That just proves to me that it's really not about how tough you are. He has such an amazing attitude. And he doesn't complain. He is the sweetest person even in the middle of feeling horrible. But I see in his eyes that this is very, very hard.

Like I've said before, I can't wait for it to be February. And I'm so glad we are getting this behind us before the new baby arrives this spring.

Oh, that reminds me...

We found out yesterday that the new baby (due May 2) is A BOY! I will have a third grandson this spring. I can't wait to get to know this new little person. I have probably never mentioned it, but I LOVE BEING A GRANDMA.

Danny suggested to Joshua (four years old) that they name his new little brother Jack. Joshua said, "How about Beanstalker?" I don't think we want Joshua naming the baby.

Well, I have a bruch to attend in an hour. What in the world am I doing sitting here at the computer?