Interview with Pat Croce & ACS

I recently did another brief inspirational video with Pat Croce for the American Cancer Society’s HEALED initiative. You can check it out HERE!

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Cancer Exercise Specialist Certification

I committed to doing a thing. Many people know that for the last 16 years I have been volunteering to mentor and consult cancer patients on a variety of topics including fitness and exercise. And this is something I will continue to do. To add further value to this, I enrolled in a Cancer Exercise Specialist certification program which is conducted by the Cancer Exercise Training Institute, in partnership with the American Council on Exercise. I’m looking forward to gaining some valuable knowledge which will only help both me, and the patients I engage with. Stay tuned for more!

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ACS DetermiNation

Greetings!! I am most stoked to let ya’ll know that I am going to be lending my energy, motivation, and expertise to the American Cancer Society’s DetermiNation program. This is a program that offers training and support for people to participate in running and cycling events while raising valuable funds and awareness for their mission. I had a great call with their leadership team and am looking forward to adding value wherever I can. Check then out HERE.

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Happy Diagnosaversary

5CD483D0-FB12-4266-BFB3-B6D760260E8BWell here we are again… another February 24th. On this day in 2006 my wife and I sat in the office of an oncologist we had just met as we tried to wrap our heads around the diagnosis he had given me: chronic lymphocytic leukemia. This is the one date that is imprinted on my brain more so than any other disease related date. More than my remissiondates. More than my relapse dates. My initial diagnosis date of February 24th, 2006 will never be forgotten.
But I’m not here to dwell on anything negative and I’ll be brief. I bring this up simply to acknowledge its relevance in our lives and to stand tall knowing that I continue to fight the good fight and I continue to win. 11 years of living with a chronic cancer has taught me a lot. It’s taught me a lot about myself, about disease and drugs. It’s taught me a lot of about life and how it is in a constant state of change and movement. Nothing ever sits still. It ebbs and flows. You’re on top of the world one minute and then you may bottom out the next. It stinks, and then it’s awesome again. A giant pendulum constantly swings back and forth and brings us all along for the ride. Understanding and accepting that as a universal truth is ¾ of the battle. The ability to savor the highs and buckle up for the lows is the key to a peaceful existence,
But I’ve also learned that with the right perspective and mindset you usually end up on top. And if lived with an open heart and an open mind, this life is pretty stinking unconditionally awesome – without question. I never rolled over with this disease. I figured out ways that I could make this disease work for me and not against me. And while it is a “disease” and it is a vicious adversary, I think I’ve done a pretty good job of finding silver linings and making it count for something. I think I’ve found ways and reasons to turn my relationship with the adversary into something positive.
To everyone who has touched my heart along the way of this journey, thank you. To all of the caregivers and professionals who have cared for anyone in this community, thank you. To the warriors who are no longer with us, you didn’t “lose” this fight. You made an indelible mark in this word and dealt blows against the disease. The world may have lost you but you didn’t lose the fight. We’ll carry the torch and forge on with you, for you, and because of you and you will forever be with all of us.
FC
Happy 2/24. Life is good.
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ACS HEALED

I was recently a guest of Pat Croce’s on the American Cancer Society’s initiative HEALED. The full segment is about an hour long and I come in at around the 25 minute mark. You can check it out here:

https://www.youtube.com/watch?v=hNw9oZyIiPw

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Welcome Calquence

My new weapon of choice in the ongoing battle against chronic lymphocytic leukemia. My last med was quite effective for about 3 years but then started yielding some undesirable side effects so we opted to move on down the line in treatment options. In my 15 + plus years living with this, I’ve now been through the following oral and IV (54 infusions) medications: fludarabine (Fludara), rituximab (Rituxan), Decadron, Prednisone,
bendamustine (Bendeka),
ibrutinib (Imbruvica), and now acalabrutinib (Calquence). And while that may sound like a lot, I’m extremely grateful that I do indeed have options available to me. You’re up #calquence and #AstraZeneca! So far, so good on this and hopefully this will be a long term solution. But if not, I rest assuredly knowing that other options do and will exist thanks to the incredible work being done in the #bloodcancer community. #cancer #leukemia #cll #survivor #livingabove #patient #patientadvocate #patientadvocacy
IMG_7089My new weapon of choice in the ongoing battle against chronic lymphocytic leukemia. My last med was quite effective for about 3 years but then started yielding some undesirable side effects so we opted to move on down the line in treatment options. In my 15 + plus years living with this, I’ve now been through the following oral and IV (54 infusions) medications: fludarabine (Fludara), rituximab (Rituxan), Decadron, Prednisone, bendamustine (Bendeka), ibrutinib (Imbruvica), and now acalabrutinib (Calquence).
And while that may sound like a lot, I’m extremely grateful that I do indeed have options available to me. You’re up #calquence and #AstraZeneca! So far, so good on this and hopefully this will be a long term solution. But if not, I rest assuredly knowing that other options do and will exist thanks to the incredible work being done in the #bloodcancer community. #cancer #leukemia #cll #survivor #livingabove #patient #patientadvocate #patientadvocacy
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The Patient Story Interview

Here is the finished product of the 5 part interview I recently did for @thepatientstory. The 5 segments track my 15 year journey from initial symptoms all the way through to the targeted therapy treatment I’m currently on…. and all 54 rounds of chemotherapy treatment in between. I usually struggle a lot with listening to my own interviews but I think the team did a nice job with this project.

CLICK HERE TO VIEW AND READ.

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Team Relentless Grace

IMG_6205A week ago we were entertaining the concept of a running wheelchair to run and race with MG. Fast forward a week and BOOM…. Thanks to some very generous donors who contributed to our crowdfunding effort we placed our running chair order today! And thanks to a few creative minds and a collaborative effort we will soon be on the road running and racing this beaut under our new identity Team Relentless Grace. The name represents my 15 year relentless battle with leukemia and the strength and Grace that Mary Grace demonstrates everyday throughout her ongoing and life altering journey. The logo colors are meaningful and represent cancer, leukemia, stroke, and aneurysm awareness.

fullsizeoutput_1a7eThank you to everyone who was a part of this project for the incredible support and generosity you’ve shown as well as the support you’ve shown through the years. We’ve been given a new and very exciting opportunity for the next chapter in life. Stay tuned for more exciting updates.

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National Cancer Survivors Day 2021

It’s been a long time since I’ve posted here. It’s not because I haven’t been active on social media. I’ve been very active on Facebook and Instagram but I’ve done a poor job of posting updates here as well. I vow to be better!! ….

195279425_10226045122742535_6345574053335448850_nA few last words on this year’s National Cancer Survivors Day … In short, thank you to everyone who has played a part in my sustained survivorship. As many of you know, my leukemia is chronic and incurable. Our goal is to constantly maintain and manage the disease with the hope of beating it into submission and keeping me in remission. To date that has required 54 rounds of IV chemo, countless rounds of steroid therapy, and an oral targeted therapy treatment drug. “Surviving” is a present tense exercise for me. Every day I manage my leukemia, remain diligent with my drug therapies, and control what I can to keep my blood work and lymph nodes in check.

To everyone who has supported me along the way, thank you. To every doctor, nurse, receptionist, and scheduler who works tirelessly to put people like me first, thank you. And to my primary oncologist whose name I won’t mention but who has been my #1 go to for all 15 years of my disease, THANK YOU for all you’ve done and for putting up with my relentless questions and challenges.

In closing, please be kind. Everyone you meet is facing their own challenges. Support them. #survivor #cancer #thankyou #remission #cancersucks #bloodcancer #cll #leukemia

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National Cancer Survivors Day 2021 is Coming!

197319324_10226045122662533_1588725611016742197_nNational Cancer Survivors Day is almost upon us. And I for one plan to make it much more than a single day celebration. So buckle up. Today I look back on the book that I wrote 6 years ago. This was the fifth book I had written and I felt that it was a pretty comprehensive snapshot of my cancer story. And it was…. 6 years ago.

As the cancer Wheel of (mis)Fortune would have it, my body stopped responding to the chemo drug Bendeka, which I spoke about in great detail in the book, not long after that book was published. In time we would turn to the next treatment drug in the arsenal; Ibrutinib, which is what I’m still on today. Some may look at that as a failure of one drug which forced us to look to another. I’ve made the choice to view it differently. The fact is, throughout my 15 year journey, I’ve been on rituxan, fludara, bendeka, decadron, prednisone, and Ibrutinib to keep my leukemia in check. And I don’t look at any of those drugs as having failed me. Rather, I embrace the reality that anytime I’ve needed a different answer, one was available for me. And I embrace the fact that there are more available options at the ready and others in the pipeline. There have been many more chapters to my story since that book came out. And there are times that I wonder if I have a continuation in me. Maybe I do someday, but not today.

197313453_10226045122622532_4688561822834653901_nToday I just celebrate my place on this planet and try to laugh often and not take my said place on said planet too seriously. Peace. #survivor #cancer #nationalcancersurvivorsday #ncsd #lls #cll #remission #ibrutinib #bendeka #fludara #rituxan

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