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Two Months Down...

TIME TO BATTLE UP!

It's been a great ten years!

I've managed to stand up to this tumor for a full decade and outlive my prognosis while livin', lovin', traveling the world, finding the love of my life, sharing my memoir, having babies, etc..., but the time has finally come to dig back into my skull and confront this sentient son-of-a-bitch once again.

As you can see in the edited image below, the image on the far left was captured May 13th right after I finished a full year of chemo, the center image was captured July 22nd with some significant growth, and the image on the far right was captured August 27th with even MORE growth. It appears we've made it angry. 

My wife, parents, and I went down to MD Anderson in Houston, Texas this past week where we met with multiple doctors who all agree it's time to get back in there and see what's going on. They want to do another stereotactical biopsy (which they did ten years ago), but this time use their advancements in immunotherapy and genetic testing which have both greatly increased. By getting a fresh sample of this tumor they will get a much better idea of determining what this tumor is specifically made of and how they can attack it.

HOWEVER, when they do this biopsy they will be aggressively looking for opportunities to resect as much of this tumor as they can. This means the recovery time on this surgery could be between one week (biopsy) to four-plus weeks (brain resection). And again, there is a high likelihood of adding radiation and chemo directly after this surgery as well. Who knows how long the recovery of this will be, but you can DEFINITELY help us during this time!

My lovely wife Lori will be at home with our girls and will be taking care of them, so it would be amazing if you could help out and contribute to this meal train! We're already got a great list being set up, but feel free to contribute however you want. I'll keep you updated as things move on, but until then, remember...

YOU ARE STILL ALIVE!

Good News / Bad News 😬

This has been ONE crazy month. So I've been waiting to release this news until all of my high school reunions, Duarte events, Bent Not Broken Gatherings were finished and now... here we are.

Cutting to the point, my last MRI was NOT good. Over the year of taking chemo, we saw that the tumor had actually started shrinking, which was great! But three months after my final pill, we went back in to get an update and saw that my tumor IS PISSED!  The image on the right was from the MRI I took just after finishing chemo and the one on the left is from three months later. Pardon the language, but this is the text I sent to Lori after seeing this.

And to add insult to injury, 5 minutes before my Nashville Bent Not Broken gathering on August 3 - 4 started, I fell to the floor and had another grand mal seizure. The bummer was that no one else was in the lodge with me, so there was no one to help me out. Just me, on the floor, writhing around, then waking up unable to stand or speak, stumbling around like a 2 am drunkard as our cancer survivors start walking through the door. Of course, they were very concerned, and I eventually came back to reality. But what a kick in the face from this damn tumor. 🙄

GOOD NEWS TIME!

I will be going down to MD Anderson in Houston, Texas next week, where their doctors will take a look at it. And based on the results and their opinions, we'll most likely do another biopsy (dig into my brain and pull out a piece of the tumor to analyze it). I think we've all been hearing about the progression in cancer treatment, and especially brain cancer, so we're looking for a forward-thinking solution to deal with whatever my tumor has turned into. 

I'll gladly be accepting your prayers! If I have any friends in Houston, give me a shout! 

Love + Peace, ya'll! 

"THE CASTLE!!!"

...said Etta EVERY SINGLE SECOND since our girls learned they were going to Disney World!

We were recently blessed by Seth Martin and Chris Equizi as they helped us gather our tickets for our family's first trip to Disney World! And when I say "blessed," I truly mean it. They were FAR too generous with their money, which allowed us to have the time of our lives!

DANCE PARTY DISNEY!!!

Thank you for inviting us, Mike and Lindsay DiCuirci, and our families to celebrate this summer with you at Disney World!

Love you guys!

 

 

I love my cancer

Unfortunately, I really don’t have that much to say today. In fact, this day has snuck up on me. I’m sure the majority of you have heard all of my stories a thousand times, but I think it's time for me to start living out a story that has been actively brewing in my mind for a few years now. And there is no easy way to get this off my chest, so I'll just say it out loud:

I love my cancer. I am at peace with my cancer. 

I assume those words mean something similar to an athlete who says he “loves” the sweat pouring from his body during his muscle-destroying training. Or a solo cellist who “loves” his rigorous practice schedule. Or a mother who “loves” watching her disabled child develop, despite the overwhelming struggles it brings every day. It's a strange kinda love. A love you never really considered, but a love that snuck up on you, that has attached itself to you, that won’t let you go.

I feel strange saying it, but in my life, it’s true: I love my cancer. I am at peace with my cancer. I'm tired of trying to "battle it," to "outthink it," to "destroy it." I'm fine to walk with it for a bit longer and if it chooses to stay or to leave, I'll accept that. As the scripture tells us: "Can anyone of you by worrying add a single hour to your life?" Pretty sure the rhetorical answer to that question is 'no.' 

I feel as though I'm being called, more and more strongly each day, to do something unique. It's a similar feeling as to when I had to write my own book, Thank You Kung Fu, or start up my nonprofit, Bent Not Broken. But in order to reach that next step, I have to have the right heart. And as days go by, I realize the only thing I can do that truly means anything is to embrace love and peace.

So as I move forward, today, tomorrow, maybe even another day if the Lord sees fit, all I ask for are more moments to show and receive true love and true peace. I'm sorry, I'm wearing these words thin on reporting about a half-witted thought. So I'll just end with this:

Thank you for the love and peace you've offered me over the last ten years. You have no idea how much you have changed me. I hope I get to see you again soon. I’ve got a giant bear hug I've been planning to give to you.

Love and Peace, my friends.

My Daughters Are Seizing

The only thing seizing today are my girls after they discovered they are going to Disney World in a month!

Today is their birthday (Marian is 5 and Viola is 4) and we thought this would be the perfect time to tell them. We never would have been able to do this, but our dear friends Seth and Chris invited us and HOW ON EARTH CAN YOU SAY NO TO THAT?! So we'll probably be spending the majority of the next month showing them youtube videos of all the different things they will get to do there.

This trip reminds me of when I went to Disney World when I was in 5th grade and my dad FORCED my sister's and I to wear fanny packs with my parents' contact information in the pockets. I thought he was crazy then, but you better believe I'll be doing THE EXACT SAME THING when we go (and I'll also be wearing a fanny pack on my own volition).

This month has been unbelievably crazy. Lori sold The Sparrows building (coffee shop is still there) on Wealthy St. to help repay the debt we acquired from opening (and closing) our second shop on Bridge Street. I swallowed my final chemo pills last week on the same day I was being interviewed for a quite interesting (part-time) job, and yesterday my doctor reported that my MRI shows that my tumor is just hanging out which is fantastic news!

But I feel like I'm caught in a whirlwind right now. My girls continue to grow with marks on the wall to prove it, my wife is doing amazing things to "up" her business, but I feel like every day for the past year has been such a struggle for me to get out of bed due to these chemo meds. The only thing that has saved me is my doctor prescribing me with Adderall right before I took my trip to Japan. Hey cancer folks! If you are on chemo, ORDER YOUR DOCTOR TO PUT YOU ON ADDERALL. Sure, it may be low dose speed, but it's the only thing that saved me over this past year.

I'm still trying to focus on Bent Not Broken, but it's just so hard to raise money for an event that nobody has ever seen before! The event costs $25,000 total and it's such a struggle to raise that money. Now I'm officially positive my spiritual gift is NOT to raise money, but to spend it in awesome ways! Ha! If you have a person with cancer in your life, it would be amazing if you could donate $1,000 to pay for them (and their personal supporter if they choose to bring them) to attend.

YOUR donation will include lodging for two nights, amazing vegetarian food, cancer survivor stories, lessons in stress reduction, cancer-friendly exercise including yoga, watching a fantastic documentary named, "Heal," comedians who have been through cancer, musicians who have been through cancer, and enough marshmallows, chocolate, and graham crackers to keep us up all night sitting around a campfire laughing and crying as we share our stories.

Go here to learn more about sponsoring a survivor!

It's a TRULY magical event. Something I needed SO badly when I was initially diagnosed, but could never find. I was going to find an inspirational quote to go here, so I looked and found that T-Pain says it best, "Once people tell me I can't do stuff, I'm going to go and make it happen." Stay tuned and see what God can do when His people take risky chances in His name... I'm scared as shit, but I refuse to back down. 

But before then, we will be hosting a gathering at The Old Goat here in Grand Rapids. If you have cancer, we are welcoming you and your family to join us for an amazing night of vegetarian food and music by, "Third Coast Dgypsy Jazz." If you'd like to sign up to come, go here. If you want to just show up, please do! This event is for YOU and we are counting on our local businesses to make it FREE for you!

And also! We will be holding my 10th cancerversary party on June 7th at Sandy Point Beach House! Again, feel free to show up after 5:00-ish as we celebrate my "I Am Still Alive" victory by flipping off a lovely cake!

Great to be back here writing, throwing up my guts for you once again. Need to do this more often. Until then, I'll be working on my Mickey Mouse voice to appease my daughters for the next month.

Here we go again!

Goodness gracious, I am so frickin' scared right now...

I just announced the next Bent Not Broken's event and I feel like I'm lost in a desert. I KNOW this idea came from God and I know that the people who attended the first Gathering truly enjoyed it, but everytime I try to move something important forward into the world it is always through dark cobwebs of fear and doubt. As with the first event, I'm going to need A LOT of help, prayers, and cash from those of you who support this cause!

If you want to catch up with Bent Not Broken, we just posted our newest video asking for donations:

Nevertheless, we have been blessed to have our next event at Onsite Workshops, near Nashville, Tennessee! It will be August 2-4th and AGAIN, will be FREE to cancer survivors! It's such an amazing space!

Check this out... "Located in a beautiful ranch-like setting in the breathtaking rolling hills outside of Nashville, TN, Onsite provides a safe, loving, family environment where guests can break the cycles that hold them back and rediscover themselves and their relationships. We are committed to creating the highest quality experience possible through our passion, innovation, and service. Known for many years as the worldwide leader in therapeutic and personal growth workshops, our primary goal is to help each guest reach their full potential of emotional freedom."

I LOVE IT! I couldn't have asked for a better partner to host this next gathering. Everyone I have spoken to there has been so kind and is cheering us on to throw another great event! BUT, we still need donations, and I'll be going after them in a new city with new people to ask, so the stress level is already starting to steam up. 

But if God chooses to keep me on this planet, He's going to have to deal with me continuing to shoot for the moon! He asked me to help those who have struggled as I have, so I have formed, what I believe to be, the best get-away for cancer survivors in existence. If you don't believe me, check out our survivor videos!

Survivor Lisa Bade:

 

Survivor Tina Derusha: 

 

Survivor Bari Simon:

 

In fact, here is a photo of everyone from our 2018 gathering at the Franciscan Life Process Center thanking you from the bottom of their Bent Not Broken hearts!

Alright, enough already... I ask that those of you who have been following my story would know that THIS is the next part of my story! So to start this whole thing up again is showing me that I AM STILL ALIVE! It seems like a risky life, wading through these cobwebs, but I'll take it!

If you'd like to donate, you can go to bentnotbroken.org and click on "Donate Now," you can mail your donation to the main office at 200 Holmdene Blvd. NE Grand Rapids, MI 49503, or you can call me and I'll take your donation over the phone: six-one-six, three eight nine, four zero four zero.

Oh! And if you're new, check out my book at Thank You Kung Fu and it'll catch you up!