Friday, January 31, 2014
Tuesday, January 28, 2014
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
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
Saturday, January 25, 2014
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.
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)
Tshirts can be ordered for about $5. Submit your request here.
Many have asked how you can help.
donation of 100 disposable paper cups Thanks Katie M
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!
Friday, January 24, 2014
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.
Tuesday, January 14, 2014
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.
Monday, January 13, 2014
THE NEW SUPER SOLDIER SERUM AWAITS!
Got the call from the Clinic today that I'm on the trial of the PD-1 blockers beginning just after the marathon!!!! I've never been so excited to know that I'm gonna feel like crap for a while! No placebo groups this time, just differing doses of the 'good stuff.' Thank you for ALL of your prayers - this is the 'Hail Mary' pass to the end zone. Let's see if we can beat the coverage!
Thursday, January 9, 2014
Winter Soldier Marathon
Big day of planning for the marathon today (yesterday 1/8/14) - & we have a name! Ellie & I were working on logo, & both wanted to do something Capt America-esque. We tossed around a modified version of the Strategic Scientific Reserve, but couldn't come up with a name, until it hit me between the eyes- Winter Soldier! The phrase is a riff off a Thomas Paine observation about summer soldiers being fair weather fighters, but the Winter Soldiers were the people who supported the cause heart & soul. The friends running this thing with me - JD,Elizabeth, Meghan, & Dr. Rini - are truly my winter soldiers. I can fight the cancer battles, but with my friends, we can change the world! Will be posting a mile by mile schedule for those who have expressed interest in running with us soon!
Friday, January 3, 2014
The Marathon
As many of you know, in February or March, my oncologist believes I will probably need to begin treatment. The most likely treatment option is one that has a host of charming side effects, including hand and foot sores, and explosive diarrhea. You're welcome for that visual. Anyway, you may remember that just after I got this news in November, I said that, one way or another, I was going to run a marathon in February, because if not now, when? (And, PS, that's true for the rest of you lot, too. As many of us in BG were reminded all-too-vividly over this break, we never know when we'll get called Home.)
Over the past few months, my friends Elizabeth Gorski, JD Pooley, Meg McVey, and my doctor, Brian Rini, have been training and preparing to run 26.2 miles together on Sunday, 2 Feb... Super Bowl Sunday, and Groundhog Day! For Meg and I, it's a first marathon; for all of us, the first in winter (and we are sure hoping for at least 15*F that day!!).
This run is a PURELY informal affair! And by purely, I mean that in the sincerest definition of "pure." In "Born to Run," Chris McDougall talks about how running as a community activity - and NOT as a race - is part of the secret of not just the physical health of the Tarahumara, but their social and mental health, as well.
Now, I also mean 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!
I would love to invite some of you to run with us, for a mile or two, even for a few hundred yards! I can tell you personally that, based on my long runs of up to 17.5 miles, I sure would love to see some fresh faces and fresh legs in those last ten miles to keep us going!! Maybe you'd like to adopt a mile near the end to come run with us! I'll be posting more information here as we get closer to the race. But if you feel like a run on Groundhog Day - well before the Super Bowl starts! - come on out with us!
9am start at St. Aloysius
The Boyledonia government offices and Katie's office building on campus are on the route 3 times if running the whole marathon. Great places to stash or discard layers.
Over the past few months, my friends Elizabeth Gorski, JD Pooley, Meg McVey, and my doctor, Brian Rini, have been training and preparing to run 26.2 miles together on Sunday, 2 Feb... Super Bowl Sunday, and Groundhog Day! For Meg and I, it's a first marathon; for all of us, the first in winter (and we are sure hoping for at least 15*F that day!!).
This run is a PURELY informal affair! And by purely, I mean that in the sincerest definition of "pure." In "Born to Run," Chris McDougall talks about how running as a community activity - and NOT as a race - is part of the secret of not just the physical health of the Tarahumara, but their social and mental health, as well.
Now, I also mean 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!
I would love to invite some of you to run with us, for a mile or two, even for a few hundred yards! I can tell you personally that, based on my long runs of up to 17.5 miles, I sure would love to see some fresh faces and fresh legs in those last ten miles to keep us going!! Maybe you'd like to adopt a mile near the end to come run with us! I'll be posting more information here as we get closer to the race. But if you feel like a run on Groundhog Day - well before the Super Bowl starts! - come on out with us!
9am start at St. Aloysius
The Boyledonia government offices and Katie's office building on campus are on the route 3 times if running the whole marathon. Great places to stash or discard layers.
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