Before marathon tour

I did not get this posted here in a timely manner but watch it any way to see Joe and JD have fun.

Humbled

A couple of nights before Thanksgiving, JD & Heather Pooley, John & Elizabeth Gorski and I met out at Gorski’s house to talk about this idea for a little marathon. That night, we debated a number of issues; indoor, or outdoor? Trail, or road? Most importantly, big, or little?

That night, I lobbied hard for a small race – just the five of us runners, lacing ‘em up, and doing our thing. One contributing reason to it is the reason I hate to share. There’s a shirt I saw on Pinterest or something that said “If you’re going to run with me, you’d better be ready to do a lot of walking!” My running isn’t running the way it used to be. Anything over five miles, I have to do a mix of walk and run to keep my left leg from seizing up from the blood clot residue from three years ago. I generally run 2-4 minutes, then walk 1-2 minutes, for the whole 26 miles. So if you see me walking, it’s not because I quit, it because of what I do to be able to “run.”

A couple of weeks ago, the homily at church was about what humility really means; it is to be willing to be embarrassed. As this race has gotten larger, I know I’m going to be embarrassed by the glacially slow pace I keep. I know a lot of people look at this as a ‘triumph of the human spirit’ thing with me, but that, too, is kind of embarrassing. I’m willing to be embarrassed, as long as all of y’all are willing to consider the way I really see this thing: It’s a triumph of God’s love through the love of family, friends, and community.

I’m not doing this thing alone – what should impress you is the groups of people who have dropped everything to be a part of this. THOSE are the heroes here. I could never have even started training were it not for Katie and the kids. And it goes without saying that the people who will be closest with me on the run itself are JD, Elizabeth, Meg, & Dr. Rini – who committed, without hesitation, to a race on what could easily have been one of the worst weather days of the year. All the other friends who originally 'adopted  a mile' to run with us! It’s hard to imagine a stronger bond of friendship and love than that. All of our families; in my case, my parents, my sister, and all of the Boyle & Miller kin, from the beginning, have been supportive of this; so too has our church community at St. Al’s. And then the way the running community coalesced around it starting on Monday – from all over the country !; and the way the Bowling Green community – from the city offices, to the BGPD, to Grounds, to the BGSU Athletic Department, Dr. Heather, Alex, Dave’s Footware, the Roadrunners, Team Toledo, and everyone I’m forgetting in the five minutes I have to write this – came together to help as soon as this thing started getting WAY WAY bigger than any of us ever anticipated. I learned a lot about the communities I’ve lived in; from my hometown of GrandRapids, Otsego Local, to the SJ brotherhood, to the old West Hall gang from BGSU, through the Fort Wayne friends dialing in support, and especially the Rogers High/Toledo Public Schools folks who are indeed TPS Strong in every way. I’ve got others who have helped, and are going to run with me tomorrow, too. My Uncle Paul. My grandparents. A lot of you who have supported us along the way –you’ve had relatives you lost over the past few years, and they’re with me,too. All of this support, from the physical presence, to the spirits I feel are with us on this, it’s all the working of the Holy Spirit. How fitting that we’re running on a Sunday, and every footstep can be a prayer of thanksgiving for the ability to come together as a community; a prayer than everyone can feel this sort of love at some point in their lives; a prayer that we can see past our differences, and embrace the feeling of community and family, in all of its different forms!

I’ll see a lot of you out there tomorrow. I hope I get to thank every one of you individually, but I also know that, two weeks ago after my 20 mile run, I was pretty much delirious, with my core temp going low, and if those of us who did the full bug out pretty quickly, it ain’t because we don’t love you all !!!

#RunBoyleRun

Wow! WOW! This is just crazy. Thank you to everyone who has reached out to us, shared Joe's story, and offered support. It is just unbelievable.


I'm (Katie) getting a little freaked out about the crowd we might get. Please be mindful of traffic rules and the runners safety. I don't want to have to have bail money for creating a mob. :)
The runners needs to stick with the (hopefully shoveled) public sidewalks.

This is all reminding me of the scene in Forest Gump when Forest starts running and in the end has a large crowd following him.



Thanks to the Sentinel-Tribune and The Toledo Blade for the great stories on Joe.

Story from Bowling Green Sentinel- Tribune

Story from The Toledo Blade

Marathon Details

Thank you to everyone for the support and interest!

Here are some details. 

As stated before

"... this is informal in a purely legal sense. There aren't going to be any crossing guards, closed roads, formal aid stations, or anything like that. We'll have some friends who offer up water or Gatorade along the way, and you're welcome to stow a warm pair of shoes or spare pair of socks somewhere on the route!  If you run with us, you're running at your own risk, just like you would if you decided to lace up the shoes on any given Sunday and go out for a run with your best friend!"

The date is Feb 2; Super Bowl Sunday and groundhogs day. 

The start is at St. Aloysius Church at 9am. If attending the start, PLEASE park at city parking lot at Clough St and South Prospect St. Please leave the church lot parking to those attending 8am, 10am, and noon Mass.

Finish is also at St. Al. If attending the finish please park at city parking lot at Clough St and South Prospect Street. Drinks, food, and fun for runners follow run.

The runners' route is 8.5 miles, run three times. 

There are 8 runners for the full marathon. Another 30 some that we know of will run part of the course. 

PLEASE BE MINDFUL OF TRAFFIC AND RUNNERS.

There will be a Stagger Wagon traveling the route to pick up runners who need it. Not sure how but the van will be marked with balloons or something.

Call a Ride will be available for runners who need a lift off the course. Contact Katie for her cell number.

Two nurse friends will be stationed at the Boyle house.

Water/Gatorade/Powerade station at St. Aloysius and Boyle house. Roughly miles Start, 4, 8, 13, 17, 22, and Finish. Bathrooms can be found at both location. ("Put the seat down!" was added by Joe when I had him edit this! I have won!-K)

Tshirt can be ordered for about about $5 by contacting Katie. An order will be placed after the run.
Tshirts can be ordered for about $5. Submit your request here.

Many have asked how you can help.

Here are a few things we are looking for:

2 tables to set up for water station Thanks Mom S and Kelly C.

2 drink dispensers- Thanks Veronica U and Mom&Dad S

donation of 2 Gatorade concentrated mixes that make 6 gallons- Thanks Abby R

donation of 100 disposable paper cups  Thanks Katie M

donation of bananas, bagels, cookies, pretzels rods,  oranges/clementines for runners as snack after race- Thanks Mom S, Mom B, Lisa W, Andrea P, Penny O, Natalie P, Dianna B

If you want to cheer on the runners or join in at some point here are some suggestions (marked on map).

--Around miles 2, 11, 19

-Stadium Drive- if it windy this will be hard area to run so encouragement welcome. Parking at Lot 13, Sebo, ice arena.  http://www.bgsu.edu/map/

--Around miles 3, 12, 21

-Ridge Street that runs through campus, Buildings Hayes, Overman, Union, The Oaks- pedestrian only area

-Old Ridge Street School- Ridge between N. Enterprise and N Prospect 

--Around miles 4, 13, 22
-Boyle house, 943 Fairview, best to park at golf course and cheer from there

--Around miles 5, 14, 23

-Kiwanis shelter at City Park- runners run clockwise, car traffic counter clockwise. 

--Around miles 6, 15, 24

-Simpson Garden Park- corner of Conneaut and Wintergarden

-Around miles 8, 16, 25

-Dr. Heather Huntington’s Office at 536 Pearl

-City parking lot at Clough St and South Prospect

The course starts at St. Aloysius traveling north on S. Summit to Wooster. Turn right to travel Wooster east. Cross to the north sidewalks at the light at Thurstin (sidewalks on the University side will be better). Continue on Wooster until Mercer. Turn left to travel north on Mercer to the cross walk (at Mileti Alumni Center) to cross to Alumni Drive, continuing east.  The sidewalk along Alumni Drive passes behind the BGSU Welcome Center. Take sidewalk to Stadium Drive around the bend to start running west. Continueon  Stadium Drive past tennis courts and baseball field. Take a left on Mercer staying the east side. Cross Mercer at the cross walk at Ridge (near ice arena) and continue along Ridge traveling west, through campus. Continue on Ridge off campus (past Dunkin Donuts) to Main Street. Travel north on N. Main Street. You will have to cross Main Street to run west on Poe, stay on south side of Poe. There is a light at Main and Poe but if you have the chance to cross before then take it. Travel west on Poe for two blocks and turn left on Fairiview to travel south on the east sidewalks. The Boyle house is the second on the south west corner. There will be a water table across the street from the house on the same side of the street as you are running. Continue south on Fairview to Conneaut and turn right (west) to cross Fairview and continue on Conneaut. Take the drive into City Park and run the loop clockwise. When exiting City Park continue west on Conneaut. At Conneaut and Haskins cross to the south side of Conneaut for better sidewalks. Continue on Conneaut past the back side of Wood Country Hospital and The Church of Jesus Christ of Latter-day Saints.  Turn left on Wintergarden at Simpson Garden Park to travel south (staying on the east side of the street). Continue on Wintergarden to Wooster. Cross Wooster and take a left on Pearl to travel east. Use the sidewalk on the south side. Continue on Pearl to S. Main Street. Turn left to travel north on Main Street to Clough. Cross Main Street at Clough and continue east on Clough until Summit and back to St. Aloysius. Lap 1 done!

On the last lap at Clough turn right, south, on S. Prospect then left of Lehman (east) then left (south) on Summit and continue on to St. Aloysius. FINISH!

Super Soldier Serum II

Yesterday, we went through the (mostly) last hoops to jump through before beginning a clinical trial of a two-drug combination. I will try to keep this as simple as possible, not for your benefit, but for mine, because I really suck at science! 

The trial (hereafter referred to as Super Soldier Serum 2, or SSS-2) is designed to check the effectiveness of two drugs working together; Nivolumab (Nivo), and Ipililumab (Ipi). Ipi is an FDA-approved drug for treating melanoma. If this sounds like a familiar scenario, it is, because the IL-2 treatment I had at U of M a couple summers ago was also a melanoma treatment. It turns out that kidney cancer (RCC) and melanoma are pretty closely related. Nivo is not FDA approved for anything, yet. It's been through trials on melanoma, RCC, and a few other things. This stage of the Nivo/Ipi trial builds on an earlier stage. In that part, they paired Nivo with a couple of different drugs to see what it did to my kind of cancer. The drug that it did the best with was Ipi, by far. So now, the trial is looking a different dosages to see what works best... and what is safe enough to use. The trial has three different groups of patients: One that gets a lot of Nivo, and a little Ipi; One that gets a little Nivo, and a lot of Ipi; and one that gets a lot of both! 

These two drugs work, as Dr. Rini explained, by taking the brakes off of your immune system. In the vernacular of my students, my immune response will "go ham," constantly attacking the cancer cells, but also by way of collateral damage, attacking some of the rest of my body. Most of the side effects come from this attack, lots of "-itis" things, with inflammation of joints, muscles, bone, stomach, etc. Also, for the benefit of Elizabeth, it appears I will have "manageable" diarrhea. What that means, I have no idea. Extreme fatigue is anticipated. J'fatigue! J'fatigue! Je suis tres fatigue! The doc and Nurse Laura say that I should be able to work, but I'm gonna be pretty wiped out by it. 

Things are going to move very quickly, beginning miraculously (and I definitely mean that in the Hand of God at work sense) the week after the marathon. The Wednesday after, I go in for last-minute tests, and signing the big packet of releases and waivers that come with a drug trial. Then the real fun begins. The trial has two phases, induction, and maintenance. In the induction phase, I'll get both drugs administered over the course of two infusions in a very long day. The first infusion will be Valentine's Day - which is the 18th anniversary of my first date with Katie, 16th anniversary of our engagement! Then I go back the next week to get checked out to make sure I'm tolerating it OK, again the week after that to see how we're tolerating, and then the third week I go back for the next infusion. We repeat that cycle two more times, for a total of four infusions of the combination drug. April 18 will be the last with the combination of drugs. It should also be the end of the worst of the side effects. Twice in that period we will have CT scans to see what's happening with the lung tumors. The early results have been very promising. In a study of the same two drugs used against melanoma, 50% of patients saw shrinkage of 80% or better of tumors, and the side effects were reversible.

After that, we drop the Ipi, but stay on the Nivo... in perpetuity. This is the part of the trial I am most nervous about, simply because of the time and distance commitment. Every other Friday, I'll be driving out to Cleveland in the afternoon to get infused with Nivo. I'm very, very, very much hoping we can schedule it in such a way that I miss my afternoon classes, but can work the half day in the morning to try to preserve my days. I gain one sick day every three weeks, and if I can keep this down to using 7-10 full days, and then burn 1.5 sick days every 6 weeks while earning 2, I think I will be OK. I am also counting on Ingrid (my '96 Volvo) being up to the challenge of some wonderful adventures on the Ohio Turnpike!  We're also waiting to find out how all of this will work with insurance. The drugs are covered by the drugmaker, and things that are specifically study-specific are covered by the drugmaker, and that's an absolute godsend!!! But things like the infusion time and crapload of CT scans will be billed to insurance. If insurance covers this all as standard of care, it'll be much better, but it pretty much guarantees we'll hit deductible every year, which has become a much bigger deal over the past eight years of budget issues. The logistical headaches of cancer sometimes dwarf the physical headaches of treatment! 

We thank all of you for your thoughts, prayers, and support. From my biological family, through my first friends in Grand Rapids, to my SJ guys, to the old West Hall gang, the Fort Wayne friends, our adoptive Bowling Green & St Al's family, and especially my students and colleagues from Rogers, I know that the power of prayer and positive energy is what's gotten us this far. This cancer has a 5-year survival rate of 8 percent; the median patient with metastatic disease makes it nine months. We're just at the edge of three years, and doing pretty damned well, all things considered. Medically, we are in the best possible situation we could have dreamed of; SSS-2 is the best possible treatment for this stage of disease, and we're incredibly lucky that Cleveland Clinic happens to be the locus of the study instead of Mayo, MD Anderson, or someplace else that would be infinitely more difficult to pull off financially! Having pretty much THE world expert on kidney cancer just 100 miles from home... and being able to consider him a friend, as well as a doctor, is a gift that I am well aware few people get. I think often of how blessed we have been every step of the way. 

OK, that's the last I talk about the trial for the next 10 days. Now, 100% of our focus is on the Winter Soldier Marathon next weekend! Plans are solidifying like the ice on the Maumee for the run, which has grown into proportions I never dreamed of. When Dr. Rini said he was going to run with us, he asked if it was OK to share the info with their PR department, to include a picture in the Clinic's internal newsletter. When PR got a hold of the story, they asked him (and me) if it was OK to pitch the story elsewhere, and it looks like this Sunday's Plain Dealer, and Monday's Blade will have articles about the run! Katie or I will post links as soon as we get them.

Mile ETA

For anyone interested in THIS sort of thing, these are our ETAs for each mile. The race begins and ends at St. Aloysius Parish, and each of the places listed is the end point for each mile of the run. The ETAs are approximate, at best, assuming a 12-minute-mile average for the first 8-10 miles, and 13-minute-mile thereafter. After yesterday's run, I think miles 20-26 will be measured by Stonehenge.