Happy Birthday Dad

Dad's BenchIt’s hard to believe you would have been 97 today and even harder to believe it’s been 15 years since you left this earthly existence. To say you are thought of every day and missed terribly are gross understatements. Your presence is very strong and I’m fortunate that the love and memories only grow stronger with time. I’m sorry you weren’t here for some of the amazing miracles and milestones  that we’ve been blessed with over the last 15 years. You would be proud. And in spite of some challenges, we are all OK. I have my tough moments with some of our recent health issues but I get through them and tomorrow is always filled with restored hope and possibility.  Please don’t worry. We’ve got this.

I grew up living a fairy tale childhood and I have you to thank for that. You were my first and most influential role model. You and mom were always there and always figured out the right balance of giving me enough room to do and be me, while still being close enough to pick me up when I needed it. Thanks for teaching unconditional love. Thanks for teaching me acceptance. Thanks for teaching me tolerance. Thanks for teaching me that being good enough is sometimes good enough. Thanks for teaching me that there is perfection in imperfection. Thanks for teaching me how to be a supportive  husband, father, and grandfather.

Happy Birthday. I love you. We’ll see you at your park bench soon! (By the way… it really was me who started that small fire in the trash can in the garage when I was 10. And yes, I did borrow the car a couple of times when nobody was home and I was only 15. Sorry).

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Check Out Complete Tri

Complete Tri is written by avid triathletes who understand the nuances of triathlons, triathlon training, as well as the finer points of essential triathlon gear such as bikes, tops, shorts, and other triathlon clothing.

Visit https://completetri.com

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Living with CLL

I recently did an interview for Health Monitor and shared a few tips on living with a chronic and incurable cancer like chronic lymphocytic leukemia. Hopefully you enjoy reading it!

CLL Article

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2019 NYC Marathon

Steve PhilI’ll spare you the long winded recap but the question that needed to be answered was; can someone “run” a marathon with virtually no training and a long training run of 5 miles.

The short answer is YES. Especially when you run for all the right reasons and have all the right people with you. But the accompanying public service announcement is that this is not a recommended way to race and is guaranteed to cause extensive pain and discomfort. (Which will go away and be long forgotten.)

Great weekend. Great cause. Great memories.

Herosteve m

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Thanks Peloton & Megan

A friend of our daughters submitted our story to Peloton for their Comeback promotion and as good fortune would have it, we won a Peloton bike with all the trimmings!! How very generous of Peloton and how very thoughtful of the friend who was so moved by our story that she took the time to submit it for consideration. Further proof that there are kind and generous people in this world. We are very excited to join the Peloton family! While I never saw the actual submission, this is what Peloton Comeback has on their website:

Preventative Brain Surgery Takes An Unexpected Turn, Family Bonds Together For The Fight

After her brother suffered a sudden brain aneurysm rupture, Mary Grace decided to have a proactive brain scan to check for the hereditary condition. The scan found six aneurysms in her brain and her doctors recommended Mary Grace should undergo preventative surgeries.

Her first procedure was an open brain surgery, which successfully repaired four of the aneurysms on the right side of her brain. After a tough recovery, and six months later, Mary Grace underwent second, minimally invasive, procedure to repair the two smaller aneurysms on the left side of her brain.

On the day of the second surgery, the procedure went as planned, but shortly after Mary Grace was wheeled into recovery, she began having an adverse reaction. After extensive investigation, her surgeon assessed this to be an allergic reaction to the nickel in the pipeline placed in her brain, and after further research, found only three other patients in the world have had this reaction (it has a less than a 1% chance of occurrence). The allergic reaction caused what is hoped to be temporary blindness in Mary Grace’s right eye, and caused Mary Grace to have a stroke, temporarily losing mobility of the entire right side of her body. What started as a minimally invasive procedure is now a long road to recovery.

Mary Grace is no stranger to strength in hard times. She has been beside her husband of 30+ years, Steve, throughout his 13-year battle of Chronic Lymphocytic Leukemia. Now it is his turn to be at her side on her path to recovery. Having a Peloton bike in their house would greatly help Mary Grace in her recovery. It would also provide Steve with an outlet of release while remaining in the house (he has participated in more than 12 iron man triathlons).

I couldn’t think of a more deserving family to receive this gift from Peloton. They are the epitome of how a family bonds together in hard times, and one that celebrates the good times too, they understand the precious gift of life!

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On Surviving

survivorWhen it’s chronic and incurable you don’t ever get to let your guard down and say “I survived that”. It’s never completely behind you and you live in the active state of survivorship each and every day. You have great days, you have good days, you have less than good days. Your shield is constantly up as you are always aware of the status and whereabouts of your seemingly invisible foe in your efforts to continuously beat it into submission and remission. You stare the disease down like a fighter in the ring before the opening bell rings. Your guard is up but in such a way that you don’t let it own you or consume your daily existence. It’s the ultimate exercise in multitasking at the most primitive level. It needs to be a priority but it can’t be THE priority as life has a wonderful way of relentlessly throwing multiple priorities your way.

So you keep your eyes focused ahead of you. You stay the course. You do your very best to be where your feet are at all times. You eat your chocolate. You keep moving. And you never ever lose hope – for anything

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NYC 26.2

So….

Here’s the story…

When I registered for the 2019 NYC Marathon many many months ago, life’s priorities were in a much different place. I initially saw an opportunity to race my 27th marathon while raising funds for Autism Speaks in honor of our recently diagnosed grandson Reed.

Many of you are aware that life then dealt us a challenging hand which has taken a good amount of our time, energy, and resources to play through. (And we will play through it.)

For all the right reasons I’ve flip flopped on whether I should do this race a hundred times. And I thought I was close to bailing and deferring.

But as Mary Grace and I were sitting on the porch and chatting about …. everything this evening… I brought the race up. I told her that I was in crap shape and didn’t think racing was a good idea. But the more we talked, the more I was reminded how fortunate I am to still be able to do this after so many decades of racing. I was reminded that I have an opportunity to toe the line yet again at one of the best races in the world. This time running with my son in law in honor of my grandson and in support of the amazing work that Autism Speaks is doing.

I told MG it wouldn’t be a pretty effort. Hell it might not even be an athletic effort. But it could potentially be a very spiritual, albeit humbling 26.2 mile journey.

MG locked eyes with me and asked one question …

“Can you get it done?”

I then realized that I need this race on many levels. MG needs this race. We need this race.

So, I’m committed. I’ll do the 5 borough shuffle again for the 7th (8th?) time. I’ll race for my grandson Reed and the many Reeds of the world. I’ll race for MG’s continued recovery. And I’ll race to celebrate my own continued leukemia remission.

If you’d like to help, please visit this link.

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Strength and Grace

Some of you may have noticed that I’ve been a little off the grid of my regular circles and spheres. As has my wife Mary Grace. Some may be aware of our current situation which we are not living too publicly on social media but I wanted to just post a blurb about our current status.

In May, Mary Grace underwent her second surgery to repair her fifth brain aneurysm. This surgery was met with a couple of complications which has made her recovery much longer than originally expected. Following surgery she remained in the neuro hospital for 2 weeks and then worked very hard in a rehab hospital for another 6 weeks. Now home, she continues to work hard in outpatient therapies as well as with us in the house. And while she continues to make good progress every day, there is still a long road ahead to recovery.

In my lifetime, I’ve met many people who have overcome or are overcoming all kinds of hurdles and obstacles. I’ve met some incredibly brave, strong, and positive people who somehow continue to find the courage and the faith  to forge onward when things are difficult.  None of them can hold a candle to Mary Grace and the courage she’s displayed throughout this journey. Her outlook is incredible, her belief is strong, and she is committed to working hard to regain her strength. There are times when I honestly don’t know how she remains so positive but I wish I could bottle it and share it with the world.

Thank you for everyone’s prayers and well wishes of love and support. They are very much appreciated.

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Things to DO and BE

Fight the good fight, finish the race, & keep the faith. And while you’re at it… in no particular order…

Be kind. Be patient. Be bold. Be humble. Be grateful. Be an example. Be early. Keep the glass ¾ full. Listen. Allow yourself to fail once in a while. Laugh at yourself. Relax. Hold the door. Talk to a stranger. Play. Pet every dog you can. Thank a teacher, mentor, or coach. Help someone up. Keep moving. Give. Play with kids. Give people the benefit of the doubt.  Shake it off. Respect those who have roamed this planet much longer than you have. Create. Tell them you love them. Do the right thing simply because it’s the right thing. Maintain perspective. Take pictures. Write it down. Love. Don’t take yourself too seriously. Take a chance. Forgive. Know where your center is but occasionally visit the edge.

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I’m on TOP

Cape Town On TopLast week I had a follow up with my oncolodoc. My blood work continues to behave and is responding exactly as hoped now being on the targeted therapy drug Ibrutinib for 5 months to treat my chronic lymphocytic leukemia. The road to “normalcy” continues but for all intents and purposes I FEEL no evidence of disease, I FEEL no side effects to the treatment, and I FEEL awesome. It’s a good day. They’re all good days. And I share these updates not out of a love of talking about disease, but a love of talking about health, hope, possibility, and positivity.

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