Words For Wein -Guest Post By Brad

Hey Kevin –

As much as this letter is to you, from us, it is also for us, from you. Because, you see, we aren’t nearly as sure of ourselves as you are, as you navigate this troubling time in your life; we are collectively hanging onto your coattails, lingering in the as-soon-as-we-can-hear-it “now” of your news and updates. With this recent development in your fight against the invasive intruder into your existence, I thought it might be time to weigh in with some thoughts. I don’t intend to speak for everyone, nor with the assumption that my words will be an accurate representation of what others in your world are experiencing – but my intent is to let you know how I (we) perceive you, and your fight against cancer. (note: I started writing this just before your last surgery – and the relief we feel with the success of that procedure, and with your continued resilience, is profound)

I am 41 years old. I am a father of three girls and have an amazing wife that I met at a school in the woods of Dillwyn, VA. I am part of an extended New Dominion School family that includes people that I barely knew or worked with, but with whom I share a bond that goes beyond any ordinary “co-worker” relationships. In addition, we’ve all met friends and family members of our friends at NDS, and for some reason, they are part of that extended NDS family, too. We’ve been to weddings, and parties, and beach houses, and more weddings, and baby showers. We’ve made a bunch of babies. All of them are amazing little people, and when we see them together, we are overjoyed – and I think we half expect some of them to marry each other! We’ve built houses, and made homes and deepened the communities in which we live; we’ve continued our education and changed careers and started schools and have worked tirelessly to continue to help others. While we’ve seen a few bumps in relationships over a decade or so, for the most part, we have mostly known happiness and success and pride in what we do. We all know what it means to embrace a struggle and to grow. It’s not easy – but somehow, for those of us who were at New Dominion – we seem to enjoy the opportunity to risk and grow and be inspired by each other. We know how to get back up.

But I, for one, have never had to deal with something like this. You, of all people, have cancer. And it is still foreign and strange and impossibly… impossible… for me to comprehend that. And that is why I wanted to write. Because while I know that some of us have perhaps seen others struggle with this disease, or have had tragedies in their lives with which to cope and manage personal stress and sadness, this is mostly uncharted territory to us, too. We didn’t ever think this would happen to one of us, certainly not so soon. Yes, we’re a little older and grayer than we were 10 years ago, but we weren’t ready for this. I’m incredibly sorry that you have had to face this fight. It’s hard to describe how “with you” we are in this. And more than that, it’s hard to describe how we feel. In some ways – numb, and scared. But as you’ll see, we feel so much more than that.

This isn’t a downer message, though, and I hope and trust that you won’t read it as such. This is me speaking from the heart. This whole thing has been hard to know how to deal with – and nobody knows that more than you and Janie. We LOVE you so much – and the weird and odd thing is that we probably wouldn’t have ever told you that so much when life was “normal” back before January of 2013. But it’s forever different now, and it gives us strength to simply tell you we love you – and we love Janie and Katie and Anabel – because we know that those words fill you up. And therefore, they fill us too.

With my family around the dinner table one night a few weeks ago, I asked them all to think of a word or two that came to mind for them when they thought about your situation. My girls have been aware of the events, but not always so transparently – but I wanted to hear their responses, too. We had just learned about the tumor in your brain, and I had no other option in my mind than to speak about it – I could not think about anything else. Eleanor’s words, deliberately thought out and communicated, in this order: “Sad. Worried. Hopeful”. Sometimes 6 year olds know just what to say. Virginia jumped on the “hopeful” idea, and turned it into Optimistic. Laura and I had our words, too – resolve and renewal and love among others (it’s hard to just pick one or two)… and then it made sense that this was how I could communicate with you what people are feeling and thinking. I had been mulling over the idea to write to you, and had the idea to ask the group of people who’ve been with you on your journey over the past 16+ months and followed your blog to share some words that comes to mind for them (about your blog, by the way – who knew you were such a gifted writer?! – I can only hope that I articulate this as well as you).   I’m sure you hear it in bits and pieces, on the phone or in texts, etc… but perhaps this will put it all into context for you. Interestingly enough – even though at the time we were all holding our collective breath as you headed into surgery – there were few words of sadness, or fear, or worry. While one friend said “I am struggling to witness the difficulty of Kevin’s battle to beat this” (and true enough, it has been hard, which is part of why I needed to write this)… and little Ellie spoke those words that are meaningful (and perhaps an accurate representation of what we are all indeed feeling from time to time) – the words that people chose are powerfully uplifting. More than anything, it is quite clear to me that you’ve made a deep impact on people as you’ve fought, and been so transparent with your inner thoughts and feelings along the way. We thank you deeply for sharing everything with us, and for showing us your inner light.

I created a “word cloud” of what people shared. I thought it was a cool way to sum it all up, instead of just giving you a list of words. Words that appear bigger mean that they were repeated words.  Click here  to see it (it may take an extra second to load) – and a picture:

Some people understandably had more to say than just a word or two; here’s a few statements that your friends made:

• “If I had one pick for a partner or supporter to get me through the hardest challenge of my life, I’d pick Kevin. He’s the Michael Jordan of relentless optimism and I know he wouldn’t stop until the job was done.”

• “You’re a good man. And strong. We are thinking of you and praying for all the strength you need to get through this.”

• “Kevin teaches through his actions and relationships with family and friends. I feel blessed to call him my friend.”

• “He possesses the strength of a peaceful warrior.”

• “To be honest, he renders me speechless with his endurance and raw faith.”

• “…toenail dagger ninja (Janie and Kevin may only get that one – which is included for a good laugh).”

• “He can make you feel like you’ve been friends with him forever even if you’ve just met him.”

• “Nothing can dim the light which shines from within.” – Maya Angelou

• “Never stuck in his own head. Always aware of the world around him and trying to make it better. We should all learn from his example.”

• “The mark of the immature man is that he wants to die nobly for a cause, while the mark of the mature man is that is wants to live humbly for one.” – Wilhelm Stekel

• “Kevin is a genuine teacher of selflessness.”

As Father’s Day approaches next week, I am thinking of you, and the wonderful father and person that you are. We are humbled by your grace and dignity; your resilience and optimism; your commitment to your family and faith; and your resolve and determination. You have fought cancer in a way that makes us all ready to fight with you, in our own way, in our day-to-day lives. Rarely a day passes in which a thought for your recovery and health doesn’t pass through my mind, with a prayer that you continue to be as steadfast and strong in your fight. We all undeniably believe in you, and while we may not know what the future holds, it’s fair to say that we fully expect you to recover and to continue to be a positive force in the world. You have changed us for the better, and we surround you with our hearts and souls, and hope that this continues to give you the strength to win.

As one person summed it up: KEVIN STRONG

With Love, Respect, and Understanding,

Brad

After Brain Surgery

I am still having a hard time believing I had brain surgery. The tumor, roughly the size of a grape, caused bleeding in my brain which then led to swelling. Five years ago, I moved from Tampa, Florida to Maryland to take a job at Johns Hopkins. I’m blessed to have worked at Johns Hopkins and met many wonderful and brilliant people along the way. The surgeons, nurses, and anesthesiologistare all world class. I was blessed to have Dr. Olivi who is the Department Chairman of Neurosurgery and Dr.Seiber, the Department Chairman of Anesthesiology, perform their respected duties. Having them there made a scary situation more manageable.

I met with a radiation oncologist last week, and I will get at least one treatment of radiation on my brain. Tomorrow I’ll have the staples removed from my head and then get a simulation test on my brain for radiation. I will get a high-resolution MRI scan of my brain to check for any more spots. Depending on the results of the scan, the radiation will be focused on individual areas of the brain. I was informed that if I don’t have radiation the recurrence probability is 50% to that area. If I receive radiation, the recurrence rate would be roughly 10%. I really don’t like talking numbers because everything I’ve had happen to me is so rare in the first place. I was also informed not to think that because the cancer moved to the brain, doesn’t mean it’s more aggressive. Chemo has a difficult time penetrating the brain. I will continue to have MRIs and CT scans to monitor my brain. The doctors said they will take an aggressive approach, which I’m all for. I have an appt. with my oncologist on June 18 to discuss further chemo. I didn’t lose my hair during the surgery and I might lose a little of it depending on my radiation site.

 My recovery is going well. The tumor caused swelling of my brain, which affected my left leg and arm. My left leg and arm felt heavier than my right side, which made me off balance. Since the surgery, my balance is back to normal and I’m going on nightly walks. I’m still catching up on sleep from being in the hospital. I will take another week off before returning to work.

I wanted to thank everyone for your support, hospital visits, prayers and encouragement. During this scary time, your support helped my family and me immensely.