Wednesday, July 30, 2014

Disappointing!

Today my husband and mother-in-law were scheduled to be interviewed along with Dr. Ian Flinn of Sarah Cannon Research Center in Nashville on Doctor Radio (Sirius/XM) about the approval of a new breakthrough drug in the fight against chronic lymphocytic leukemia. I spent a considerable amount of time on the phone, upgrading my XM service to online listening and listened to the half hour preceding their scheduled interview, which focused on silent reflux and esophageal cancer. It was very interesting. And after hearing what the guest doctor had to say, I'm thinking I may never drink another soda. I already have nearly eliminated carbonated soft drinks from my life, but I do still have one occasionally. The program was very informative and I was eagerly anticipating the upcoming half hour devoted to patient experience with newly approved CLL drug Zydelig (pronounced Zy DEL ig).

Well, the moderator went over ten minutes into the scheduled time for Dr. Flinn/John and Marian by taking additional listener calls for the acid reflux doctor. And after that delay, another moderator arrived late due to a patient emergency. He seemed unprepared for the interview and cracked a lot of jokes, eating up more of the time. There was more banter back and forth between the hosts than I would have expected for this kind of topic. Also disappointing. But then when he did get around to focusing on the subject at hand, he never even acknowledged the patient guests (let alone asking them any questions). He directed his questions only to Dr. Flinn, which was not what Dr. Flinn had in mind. And then the time was up without John or Marian even being mentioned.

If the late (as in tardy) moderator had been involved in the pre-interview process, he probably would have understood what everyone else's expectations of the interview were. The whole idea was to talk to patients who had been involved in the clinical trial for CAL-101/Idelalisib/Zydelig. Dr. Flinn wanted them to share about their experience as patients. But that's how it goes, I guess.

Throughout the conversation, the moderator (who is also a doctor) joked about how his expertise was tumor related. He didn't seem to be that familiar with hematology and asked some questions that I knew the answers to. I felt like that was one of the most important messages for listening patients to get from this quick chat. I can never emphasize strongly enough to newly diagnosed patients the grave importance of consulting a specialist in your specific disease. A general oncologist cannot possibly keep up to date on every form of cancer. Sometimes they are less informed than you or I could possibly comprehend; especially when it comes to new treatments. It's not a dig on general oncologists. It's just a fact. The field of medical science and oncology in particular is constantly and rapidly changing. I know this to be a fact in blood cancers just since my husband was diagnosed in 2007. We have seen major changes and developments in treatments during that time. And one of the biggest is the recent study of kinase inhibitors like idelalisib and ibrutinib. Chemotherapy is being replaced by these drugs. And for John, this low-toxicity oral medication taken morning and night is succeeding in keeping him in good health after FCR (the gold standard chemo for CLL up to this point) failed to give him any remission at all.

I have to be honest; I was extremely disappointed in this program after anticipating John and Marian's participation and announcing it to my CLL friends. I don't know how many tuned in and wondered what was going on. But since I advertised it on my blog and on Facebook, I just thought I'd give an explanation. They intend to reschedule another interview in the future. If and when that happens, I'll definitely share the information.

Tuesday, July 29, 2014

My Husband and Mother-in-Law on Sirius Radio Tomorrow: Talking about their experience with CLL and the Clinical Trial for Zydelig

Tomorrow my husband (John Howerton) and my mother-in-law (Marian Kibler) will be LIVE on Sirius Radio. They are being interviewed about their participation in the clinical trial of the newly approved drug (named Zydelig), which started out as CAL-101, became GL-1101, then generically named Idelalisib. It now has a brand name Zydelig. John began taking CAL-101 in May of 2010. Marian has been taking it since October 2010. Both have had great results. 

John has had no side effects or toxicity. Marian did have a serious bout of pneumonia in 2011, but we don't know that it was or was not a side effect of the drug. We just know that some patients have experienced issues with lung inflammation early in the study. 

Here's the info in case you want to tune in:

The interview will be part of the Oncology Program of Doctor Radio (channel 81) which airs at 11:30 to noon Central Standard Time and 12:30 to 1:00 pm Eastern Standard Time.
http://www.siriusxm.com/doctorradio

Agreement, Approval or Integrity: What do you want in a friend?

There was a time in my life when being misunderstood or misjudged by others was excruciating for me. I’m still not completely comfortable with it and I’ll slip back into over-explaining myself on occasion. I take steps forward and steps backward. But today I’m a lot more accepting of the fact that being misunderstood, misjudged, and even disliked are all just a part of life on planet earth for everyone, including me. Not everyone who comes into contact with me is going to love me, like me, approve of me, or even understand me – no matter how hard I try to facilitate all of these things.

There is freedom in letting go of what has been, for me, much more of a longing than an expectation.

I am prone to sticking my neck out in all sorts of ways. And I recently shared a controversial blog post I agreed with on Facebook. The post addressed a much-hyped movie on the day that its promotion tour began (more than six months ahead of the release). I knew when I shared and agreed with this viewpoint, I would likely spark disagreement and maybe even defensiveness in some who were openly excited about this movie and the books the movie was based on. I was pointing out the reasons I thought they were actually harmful.  

I knew I might be called a lot of adjectives (closed-minded, judgmental, etc.) to my Face(book) and/or behind my back. I also knew there could be friends who remained silent, but felt personally offended or judged by the position I was taking. I realized some readers might even misinterpret or misunderstand my heart. (I’m actually not a judgmental person. And I wasn’t sitting in judgment of anyone who didn’t share my convictions.) I wanted to provoke thought because I like it when my thoughts are provoked and I gain insight into myself.

I am always intrigued by a book or movie becoming a smash by way of “I must read/watch this because everyone else is and all my friends are urging me to” or even, “I am curious.”  I’m especially bewildered at the notion that if you don’t get on the bandwagon with everyone else – or worse yet, you oppose the bandwagon – you must be in some way closed-minded or unwilling to “read outside your comfort zone” as if reading fiction about a steamy affair is somehow a valuable education, worthy of any discomfort, simply because it’s being devoured by millions of others.

I’m a pretty naïve person, but I think this way of thinking is naïve. Millions of people go wrong every day. If you’re a liberal, you have no problem believing millions of conservatives are wrong. If you’re a conservative, you believe the opposite. Nobody on either side of the aisle is swayed by numbers alone, nor are we swayed by the educations and/or degrees and/or positions of status that those of the opposite viewpoint hold. The value of something isn’t necessarily determined by how many people think it’s good. And history has shown us that.

Plenty of people would urge you to read something spiritually inspiring and you might not catch that fever at all. But sex sells. We all know it. I think, plot or no plot, good writing or bad, we all must surely know in our hearts that the explosion of a certain book series and the upcoming movie is primarily because it’s sexually edgy, graphic and titillating. The actual writing being good or bad doesn’t matter to most readers; including some highly educated readers. I know that because I watch morning television. I think Savannah Guthrie is brilliant, but she isn’t timid about telling the world how much she loved the books. I don’t consider her less intelligent. I don’t view her as evil or even immoral; just human. And I still like her. But I don’t get it.

And yet I do. Sex sells.

Let’s be real. Nobody bought this series for great literature or for the great plot – even though I have been told there is a plot and a story behind all the edgy sex. It was the nature of the books that sparked the initial interest of most readers. The only thing I don’t understand is why anybody would deny the obvious. You know it. I know it. We all know it! Don’t we?

A counselor once explained defensiveness to me this way. He asked me if I felt defensive after certain accusations were thrown at me by a loved one. I said, “Actually, this time I didn’t. It was ludicrous. It made me mad, but I knew I didn’t have anything to defend.” And he said, “Good. Because any time you feel defensive inside, it’s a clue to you that you have something to protect. There is some kernel of truth there – maybe only a partial truth, but something you are protecting. Otherwise you wouldn’t be defensive.”

Learning this has been a huge tool for me in examining my own heart. When I feel defensive, I start looking for whatever it is that I’m trying to protect. And I get defensive a lot of times when I’m not even sure why I’m feeling defensive. Sometimes a trigger is involved (from years of emotional abuse). It takes investigation to gain insight into my own heart. It isn’t always right on the surface. And sometimes it takes hearing something from a friend that challenges me and what I think. Sometimes it’s a book I read, a blog or even a quote. Anything that speaks to me on a level that prompts me to look more deeply.

I think this is how we grow. Therefore, I am not tempted to choose my friends based entirely on how much we agree on or how much we have in common. If you’re my friend, one thing you know about me is that I welcome disagreement and opposing views. I don’t like debates because, in my mind, debating represents a winner and a loser at the end. But I love discussion and sharing and trying to understand where someone else is coming from as I also try to examine my own heart for inconsistencies and hypocrisy I have yet to confront in myself. Two people disagreeing, but gaining insight into themselves and each other – now that’s a win/win to me.

As I read comments challenging my position on anything, I take to heart the opinions of others. I think about what is shared with me. I try to watch my tone and question my motive in responding in certain ways. I try not to make it about “winning.” I try not to be sarcastic, because that (in my estimation) can represent contempt – even veiled contempt. I’m sensitive to that and never want anyone to feel that from me. I try to show respect even when I disagree. And most of all I try to make sure the person I’m conversing with knows that our differences of opinion do not threaten our warm relationship – not ever. Actually, I might be wary of someone who never disagrees with me. Honesty, integrity and sincerity are very important to me in a friendship; far more valuable in any given relationship than total agreement. I have no desire to be placated. To me, that’s the ultimate in condescension and doesn’t show any respect.

Two (of the many) things I deeply value in my husband are 1) that he will always be honest with me and 2) he is never unkind in his honesty. If I ask him to tell me something, he will tell me the truth even if he knows it is not exactly what I want to hear. But he is not mean spirited or hurtful. I always know he loves and respects me. There is never any contempt.

Some of the friends I value most in my life are ones I have been able to disagree with vehemently, but still remain close to. Our interaction may get messy sometimes, but we love each other enough to clean up the mess and not let go of each other. Disposing of the friendship has never been an option. 
No. Matter. What.

So my words of wisdom for anyone reading today are not a warning about what books or movies you should or shouldn’t see. I’ll leave that choice to you. My words of wisdom are simply these:
Always keep friends in your life who tell you the truth and show you respect with their honesty/integrity. Don’t choose only friends who agree with you on everything and tell you what you want to hear, or do what you want them to do. When a friend never challenges you or steps out of line in meeting your expectations, they may not feel safe to step out of line for fear of unpleasant consequences. If so, they aren’t being completely genuine with you. They are being controlled by you. I’ve been in those kinds of relationships and I would never want to be on either end of one again. I want my friends to feel complete safety in challenging me and vice versa.

But even if our friends simply do agree with us on absolutely everything, where is the opportunity for self-discovery and personal growth in that? We need friends who share a different perspective with us. We all need to be challenged. We all need to examine our hearts and our motives. Sometimes it’s the role of a loving friend to spark self-discovery. Sometimes there’s a discovery that needs to be made even when you’re right on an issue. Because we’re not always right in the way we express our convictions, even when we hold the right conviction. And we're all inconsistent because we're human.

All this to say: I haven’t changed my mind about the value of the “art” I referred to above. But I’m so thankful I won’t lose any friends because of it. And none of them are in any danger of losing me.