Monday, June 29, 2015

Having a good time with Cody Wickline at John Howerton Honda!

Just wanted to share our four new commercial spots!

The first three are funny little ten second vignettes. The last is our BIG THANK YOU to the community for voting JOHN HOWERTON HONDA the #1 dealership to buy NEW AND USED vehicles in southern West Virginia!

Tuesday, June 23, 2015

An Update to My Previous Post on Switching Gears

Dr. Flinn called John yesterday after personally reviewing all of John's test results (blood work and scans), researching other patient experiences with Idelalisib, etc. He was out of town at a conference at our last office visit and our discussion of changing directions was with his nurse practitioner. She was reporting the lab and scan results to Dr. Flinn by phone and advising us of results. But she had also told us that Dr. Flinn would be calling to talk to John personally before his next visit in July.

Dr. Flinn told John that he is only slightly out of remission. After looking at the scans, although his nodes have increased in size they are still very small. And he hasn't had a big spike in his white count. He's just been trending upward very slowly. So it's not that the drug has stopped working. It may just need to be bumped up to the next dose. He is inclined to think that may put John right back into remission and after John said he would prefer to try upping his dose before moving to another drug (with possible side effects he is not now dealing with), Dr. Flinn said he was leaning that same way in his thinking.

I love love love having a specialist who discusses decisions with us and is open to hearing the patient and caregiver's thoughts on these decisions! I never fully grasped why we couldn't try to increase the dose first but when I asked if that was an option, the nurse practitioner had shaken her head no with an expression that I perceived as "definitely not an option." So I didn't press it. But I did hope that Dr. Flinn might offer that option when we spoke in person.

When John told me about his conversation with Dr. Flinn yesterday, I was so relieved. I know there are other drugs and we may still have to transition to something else at some point. But I'd love for John to get the maximum benefit and length of time from the drug he's successfully taken (without side effects) for the last five years. And I don't want to transition prematurely. I trust Dr. Flinn's guidance and if he did not advise staying with Idelalisib, we'd go with his expertise. But it was a great relief to me for Dr. Flinn to say he agreed that increasing the dose was an option that might do the trick (for now, at least).

I knew you'd want to know this happy news! Thanks for caring!

Friday, June 5, 2015

Time to Switch Gears

Well, it's been a while since I've blogged about CLL. But cruise control on Idelalisib has been
interrupted and we are shifting gears.

As many of you already know, John was an early participant in the Phase I clinical trial of Cal-101, now known as Idelalisib or Zydelig. He began taking Cal-101 in May 2010 after failing FCR (chemotherapy). And he has enjoyed remission status for a full five years. I've frequently referred to this symptom free part of the journey as being on cruise control.

Over the past few months, John's white count has been trending upward and his platelets have trended downward. The progression has been slow but steady. Nothing alarming. No urgency. But his CLL is definitely progressing again. Cruise control on this particular drug is ending and we must take another course in treatment.

CT scans this checkup have indicated disease progression in his lymph nodes as well as in his blood. Again, not an alarming increase in the nodes, but significant change in more than one area of his body.

For the next six weeks, John will continue taking the drug and at our next appointment we will discuss new treatment options. I'm sure Ibrutinib will be one option on the table and possibly another clinical trial will be offered.

I have enjoyed taking a break from CLL immersion during our cruising time. I've also known this day would probably come eventually. But I have not worried about it because I believe that transitioning to a new therapy will provide a new remission. There has been so much advancement in treating CLL in the last few years. And there are other drugs similar to Idelalisib that work in the same way but through different pathways. Other patients have transitioned successfully from one drug to another. But in spite of what I know intellectually, I have to admit that getting this disappointing news triggered a wave of anxiety for me. I felt so fragile most of Monday and into Tuesday.

Dr. Flinn was out of town this visit and it was the nurse practitioner who gave us the news. Knowing John's white count had been inching upward and platelets had been low for the first time since beginning Cal-101, I thought I was somewhat prepared for this. I had even anticipated there might be some lymph node change with the scans. John said last week that he thought he could feel one in his neck for the first time. But when I heard the NP say "disease progression" and that John would not be able to continue Idelalisib even at an increased dose, fear grabbed me by the throat and I knew tears were in my eyes. If I even blinked or tried to talk, they would have been on my face.

We were asked a question (I don't even remember what) and John looked over at me for my response. When he looked at me, he made a joke. "Don't ask her," he said, "she'll start crying." It wasn't the kind of question that would make someone cry. But I couldn't say a word. He said later that I had that deer in headlights look and he just knew I was fighting back a surge of emotion. He was absolutely right. I guess there was some small part of me that dared to hope Idelalisib might work forever. And those hopes were dashed.

John has not felt good for months. His fatigue has been severe and he's had a lot of unexplained pain in his body since late fall. Dr. Flinn has done extra blood work to rule out rheumatologic issues. Nothing has shown up indicating any problem other than a "profound" deficiency in Vitamin D. So I've been reading about fibromyalgia and talking to people I know who have it. I've learned of other CLL patients who suffer from this condition. And I've discovered that several good friends battle it as well. John may or may not have fibromyalgia, but he has many textbook symptoms. And fibromyalgia cannot be diagnosed with blood work. It's also possible the pain and fatigue are CLL-related or even treatment related. We'll see if he feels better after transitioning to a new treatment. And we will also consult a rheumatologist about the possibility of fibro.

There are so many things to consider when comparing treatments. In my reading the last few days, I've learned that tumor lysis syndrome (which can be fatal) has been a problem with ABT-199 (a current drug being studied). The drug shows great promise in controlling CLL, but John has one kidney and has already experienced tumor lysis syndrome previously, after his first Rituxan infusion in 2008. It was scary. I really did think I might be losing him that day in the doctor's office. He lost consciousness twice. The first time, he passed out in the elevator as we were leaving and hit his head on the metal threshold as the doors opened.

For those who don't know what TLS is, it's a metabolic condition resulting from a large number of malignant cells being killed by treatment and having to be processed through the patient's body. It can result in kidney failure. And John only has one kidney. I've been trying to protect that one kidney to the best of my ability since his diagnosis.

Ibrutinib is already an approved therapy for CLL and it is successfully controlling disease progression for a large number of patients. It has relatively few side effects. Fewer than Idelalisib, actually. But one of its known side effects for some patients is joint pain. And since John is already experiencing quite a bit of chronic pain, I worry about that side effect.

I don't know what Dr. Flinn is going to suggest, but I'm trying to get back to soaking up the latest information so we can at least know what questions to intelligently ask about the treatment options we're given. And, of course, I want to help John make informed decisions.

I'm a good caregiver and patient advocate. But this week I've been a pretty fragile wife. I've had to ask John to forgive me more times than usual because I get needy when I'm feeling fragile. And I am not always aware of my tone when I'm feeling stressed.

I have the best husband in the world. He's not perfect even though I once thought he was. But he is perfect for me. And he is without a doubt my rock.

This has been a challenging week, but it's also been a good week. I don't think I ever take John for granted. After all the years I endured an abusive relationship, a day doesn't go by that I don't think about how much I appreciate him. I truly am thankful for every day even when it's smooth sailing. But there's something about the waves kicking up unexpectedly...

My gratitude for all that I have today is magnified by the uncertainty of what I will face tomorrow.

While we are both optimistic this is just a bump in the road and new treatment will get his CLL under control again, it's still a reminder that every day is a gift.

I'll keep you posted on the next part of the journey. And thanks in advance for your prayers!

Sunday, May 10, 2015

Mother's Day Thoughts and Wishes

My thoughts on Mother's Day are of course memories of my mom and a little sadness that I only got to have her for the first 28 years of my life.

Losing your mom prematurely is staggering and agonizingly painful at the outset. Over time I've learned to live with being motherless and gradually I began to savor sweet memories rather than sinking so deeply into my loss. But there are some losses I feel today that I could not comprehend at 28.

I'll never know the mother/daughter relationship we might have had through the growth of the last 28 years.

I finally do believe in my heart that she would be proud of the woman I am today. But I don't get to experience it.

I don't get to see my mom hold my grandchildren or tell her about them. I don't get to tell her how much I admire her as a grandma and that my goal is to be as good a grandma as she was.

I'd love to do things for my mom at this stage of life. I'd love to take her for a pedicure and massage. I'd love to take her on a trip ~ just the two of us. I'd love to take her to fancy restaurants (my treat).

I'd love to laugh with her about some of the ways I am exactly like her (because the ways we were different were so big in those first 28 years that they eclipsed the ways we were alike).

I know how much she would love John and wish she could have met him. I wish she could have been at our wedding.

I wish she could have watched me become strong enough to overcome the foolish choices of my youth ... and make better choices.

I wish she could have met all of her grandchildren and watched them grow into adulthood.

I wish I could still go to her house for holiday meals. Nobody did holidays better than my mom.

My list of wishes for what might have been could go on for hours and pages. But more than anything, I really wish I could laugh with my mom as a mature woman. I wish I could reminisce with her about the past and share the wisdom time has brought. I wish I could tell her that I am able to recognize her many strengths so much more than I did as a younger woman. I would love to tell her that I'm honored when someone tells me I'm like her.

I would love to know her more intimately than I was able to know her in my twenties. I would have loved for our relationship to have had time to blossom and mature. I wish we could have been better friends. And I wish I could have had more time to show her how much she meant to me and how much I appreciate her.




If you have your mom and are blessed to enjoy the many possibilities that are losses for me (and others like me), I am not jealous of you. I'm so very happy for you. I wish no one ever had to lose their mom prematurely and go through life without the love (and occasional frustration) of a mother.

What I hope is that you will make the most of the time you've been given. And ...

Today's a great day to start!

Saturday, April 18, 2015

Meeting Cody Wickline ~ From Fan to Friend


Meeting Cody at Women's Expo


As Season 8 of The Voice was about to air on NBC, a buzz started in our little town of Beckley, West Virginia. Everywhere I went, it seemed like I was being asked, "Do you know Cody Wickline?" I didn't know Cody or his family yet. We've only lived here for three years. And when I shared that, friend after friend would start to tell me about this "great kid" from a "wonderful family" who was going to be on the show.

John and I were already fans of The Voice. So we were excited about watching his performance. If you don't watch the show, you can see his blind audition (and four chair turn) in this video...


 
 And in the battle round that followed, Cody showed another side...

Just prior to Cody's last appearance on the show (Blake chose Corey Kent White in the knock out round), we sat down with Cody and his parents to discuss the possibility of Cody representing our automobile dealership (John Howerton Honda). We thought we'd spend a couple of hours talking, but we wound up spending most of the day together. And toward the end of our "meeting," we assured them that it didn't matter to us how far Cody went on The Voice. We may have initially reached out because of his celebrity and how great his involvement in our advertising would be, but after spending time with Cody and his parents, we wanted to help promote Cody as much or more than we wanted him to promote us...



We believe in his talent. His singing and performing abilities are undeniable. But we are even bigger fans of the person. Cody has continued to impress us as we've had the pleasure of getting to know him better. He's genuine, kind, respectful and humble. And he's eagerly devoted lots of time and attention to charity work already, performing for as many fundraisers as he can possibly squeeze into his schedule. I know he'll continue to help others because it's obvious his heart is in it.

*From George Jones Museum Facebook Page
Next week Cody will be an invited guest at The George Jones Museum's Grand Opening, personally invited by Nancy Jones, George's widow, after his performance of "He Stopped Loving Her Today" on The Voice. I've heard Cody talk about what an honor it is for him simply to have received a phone call from Nancy because she loved his performance that much.

I believe Cody Wickline is on the brink of seeing a few more dreams come true. It's exciting to have the privilege of knowing and spending time with him and his family at this exciting time in his life. We couldn't be more thrilled for Cody's recent national attention. But beyond that, it's just an honor and a treat for us to be considered friends of the Wickline family. They are precious and real and devoted to each other. One of my very favorite things about Cody is his love and respect for his mom and dad. You can just tell they mean the world to him, as well as his little brother Caleb. He values their opinions and looks to them for guidance. It's a refreshing thing to see in a 21-year-old guy who is suddenly a big celebrity in our community. Cody Wickline knows at a young age what really matters in life. And I don't believe any amount of success will ever change that about him. His voice may make him a star in the eyes of many, but his heart is what shines brightest in my eyes.

We are sponsors of Cody's first arena concert here in Beckley. We're a humble little town and our arena sure isn't anything comparable to Bridgestone in Nashville or any other big city. But Cody's gonna rock the house on May 2. And John and I will be in the front row. Well, John will be in the front row apart from whatever amount of time Cody manages to get him up on stage with the band. (John has a music history of his own from the seventies, you know.)

This video doesn't showcase Cody's vocals the way the old country ballads do, but this is the Cody I'm looking forward to seeing perform on stage:



An extra treat for fans at the concert will be hearing fellow Voice contestant, Sarah Potenza, perform live with Cody in Beckley!

 

 

 

 

 

 

 

Follow Cody Wickline on Twitter

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Follow Sarah Potenza on Twitter

Follow Sarah Potenza on Facebook








Wednesday, March 25, 2015

"I NEVER want a marriage like you have."

This morning I started to make a statement about the invisible wounds of abuse in a Facebook status update. As the words began to flow from mind to the keyboard, I realized it was a blog post and not a status update. When I feel this kind of inspiration, I don't know who I'm writing to. It may be one certain someone who is supposed to read this. It may be many someones. But here goes...

If you're in an abusive relationship and waiting for some big sign that it's time to break free, look at your kids and think about the damage that is being done to their hearts as they watch and experience the continual tension and strain abuse creates in a home. The damage is fairly invisible to you right now, but it will reveal itself down the road.

I will never forget the time my son told me (as a high school student), "I NEVER want a marriage like you have." I saw so much emotion on his face as he spoke those words.

Being an emotionally battered woman, I took the "judgment" upon myself and felt the need to defend our toxic relationship. Needing to feel like keeping the marriage together had some value in my son's life, I presented the defense that even though the marriage was flawed and turbulent, I believed we had at least provided an example of not giving up because things weren't perfect. He looked at me with pity. I'll never forget that day, those words.

I still stayed longer. Years longer. My son graduated from college in 2000. He got married in 2002. And the same month he got married, I filed for divorce. Finally. I had been trying to make this marriage succeed my entire adult life (starting at age 16) and it STILL ended in divorce.

In the years that followed, I learned so much about my child I hadn't known. I always believed he was passive when it came to being picked on by other kids -- even younger, smaller kids. Over time he shared with me that he always had to underreact because he feared his dad's overreactions. He feared friendships ending between adults over some skirmish between kids. He had to control situations to avoid anger and rage, to protect everyone in his dad's emotional path. This was a big weight for a little kid to carry around. All the time I thought my child was just passive, he was suppressing and suppressing and suppressing emotion. Internalizing to this degree can result in physical health repercussions as well as emotional health repercussions.

I learned that my son often felt emotionally neglected...BY ME. That was shocking. I knew he didn't have the pampered life some of his friends thought he had (because his dad enjoyed lavishing a lot of "things" on him). My son had expensive basketball shoes and the latest video games. We took great vacations to wonderful destinations like Hawaii. One summer we even took him on a major league baseball stadium tour that included Camden Yards, Yankee Stadium and The Baseball Hall of Fame in Cooperstown. Neglected? I never would have guessed. And then he explained the ways he felt his needs were not even on the radar because his mom was consumed with the full time job of keeping a narcissist's emotional tank full and catering constantly to his whims and demands, buffering him and others, etc.

I won't try to tell you my son came through all those years of abuse unscathed or without wounds. He wouldn't tell you that either. I've written a whole book about our life and his response after reading it was that I could never make people understand what our life was like behind closed doors by writing about it in a book -- and then he added, "Especially the way you write." He was alluding to the way I write with intentional kindness and grace. My goal was never to make his father into a monster or dehumanize him in my writing. But you know what? Sometimes that man WAS a monster to live with. And not just for me. For my son.

In spite of the wounds, my son is also a survivor. He's successfully and happily married to a wonderful woman. He's an excellent father to his four kids. He's a pastor. He's a coach. Thank God, I did not ruin his life by staying so long. But did I make his childhood better because I stayed like I always believed? I seriously doubt it.

As a couple, as his parents, the best example we were for him was what he didn't want for his own life. And we gave him a fear of commitment (which he overcame). These are not accomplishments I am proud of.

As a mother, I now know my son felt like he had to be my emotional protector -- for more years than I realized. This is a responsibility I never would have intentionally imposed, but one he carried into adulthood nonetheless. We've been enmeshed. We've been codependent. And our individual wounds impact our relationship to this day. I communicate pretty effectively with most people in my life. But I don't feel like I communicate all that well or effectively with my son. I attribute this mostly to my inability to "risk" hurting his feelings or saying something in a moment of emotion that I would ever regret. I like my record of having never inflicted a lifelong wound or painful verbal memory. And I think sometimes I put that record above real and honest communication. I hold back. I have a self-imposed expectation of myself -- to rise above and take everything in stride.

The scary thing is that I am fully aware this is the same way I interacted with his dad for all those years. It's that same type of fear; fear of my words creating a mess I can't clean up. My ex-husband did try to hurt me and I know that my son does not. But I project these feelings onto other close relationships, including my own son, to this day.

I realize that the choices I made early in my life had a tremendous impact on my son, his memories, his formative years. But every additional year of enduring and enabling abuse added damage not only to each of us as individuals, but to our relationship for years to come. It's all so clear to me now, in hindsight. Even subjecting myself to continual condescension and belittling in the presence of my son all through his formative years has a bearing today on how we interact. I see it. Sometimes I don't feel respected or appreciated. How much of it is real and how much of it is because of my own wounds, the fact that I struggle to feel that I have worth and value, I don't fully know. I do know my son did not witness his mother being valued, respected or appreciated until after I married John in 2004. All the years he lived at home, I was allowing myself to be continually disrespected, belittled, demeaned and objectified in his presence. There is no way to turn that into a positive memory for either of us. I wish I had developed some self-respect much earlier in my life.

Thank God, my son has not had to worry about me or my welfare in recent years. I still try to make sure I'm never a burden, never a bother, never in the way. And that's not ALL bad. I don't think moms should impose themselves or their emotions on their grown kids. But I recognize that I take it to a whole new level. I'm still interacting as a battered woman who mistakenly believes her value is rooted in not getting on anyone's nerves. I constantly look for evidence that I'm valued for who I am, apart from performance or pleasing people. But inside I never feel good enough. I apparently project confidence because I'm expressive and outspoken. But if you could see inside my heart, you would see something very different. You would see fear of disapproval still taking up way too much space. You would see that even though I express my opinions, I also worry obsessively over almost every word that ever comes out of my mouth.

My life today is so good. God has taken my oppressive past and turned it not only into a story of personal deliverance and liberation but also into a ministry of healing and empowerment for other victims and survivors. However, because my long history of abuse still has a pervasive presence (at times) in my thoughts and fears; because it rears its head in the most important relationships of my life to this day, I can never encourage another victim to "hang in there and keep trying" with an abusive spouse. And if you have children being raised in an abusive home, you NEED to think about them and what the stress of living this way is doing to them and their impressionable hearts and souls.

Kids don't want abuse -- even emotional abuse -- for their mothers. I cannot help but think about the words my son has said to me many times, "I didn't want you to stay for me." I remember him telling me after I finally left for good that his biggest fear was of his parents getting back together. I remember him telling me he had nightmares (I think he still does) that we are getting back together. And I remember him saying emphatically, "He will never treat you any differently. Please don't let him talk you into coming back this time." I also remember times when he hadn't given up hope that his dad might change. One desperate time in particular I felt my son's hopes and did what I thought he wanted (stayed). But even in doing that, I was putting a responsibility on him and a weight that wasn't his to carry.

It's not that God can't or won't redeem whatever length of time you give to someone who only wants to harm and oppress you. He can and He will. I am evidence of that. But that doesn't mean He wants you to continue in abuse. It doesn't mean that's His will for you and your children.


While you may think you are waiting on GOD, please consider that HE may be waiting on YOU.

Sunday, March 22, 2015

New Book Release

I am happy to announce the release of this compilation book.
I feel honored to be one of the contributing authors.





 
Contributing Authors:
 
Katha Blackwell 
Regina Butler-Streets
Natasha R. W. Eldridge
Lynn Fairweather, MSW
Shari L. Howerton
Catherine Mossman
Susan Peabody
Amanda Pearson
Rachel Russo, MS, MFT
Stephanie Snowe

 
 
 

I have recently reduced the regular Kindle price of my first two books to $2.99 on amazon.