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.

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!

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!

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.

Merry Christmas and Happy New Year!

NATIONAL SECURITY AGENCY
Summary of Intercepts :: The Boyle Cell

The agency has intercepted telephone and internet communications related to the shadowy revolutionary organization known as the Boyle Cell throughout the 2013 calendar year. In the wake of the unauthorized Snowden disclosures, the agency has decided to release a summary of our analysis of these wiretaps.

WINTER: Social media intercepts indicated that three agents of the extended Boyle Cell network arrived in Detroit, Mich. with the express intent of humiliating an American treasure, Miss Michigan. Boyles with the known aliases of “Joe,” “Ellie,” and “Papa” threw up an “O-H-I-O” with the beauty queen. Local prosecutors considered terrorism charges until it was confirmed that Ohio indeed does own Michigan. Soon after this exploit, “Ellie” suffered a broken arm in what intel indicates was a ‘basketball incident.’ This story is expected to grow larger over time.

SPRING: Medical staff have examined electronic medical records to confirm that “Joe” Boyle had surgery on a particularly sensitive area for complications from a cancer treatment-related procedure the previous year. We have not corroborated the specifics, but intel indicates he really had a ball! At approximately the same time, phone intercepts imply that the middle Boyle – code name “Joey” – was initiated into the organization through a rite they call “First Communion,” and the shortest Boyle (with the nom du guerre “Mark”) graduated from an indoctrination camp called “Child Development Center.” “Ellie” undertook a rigorous physical training program through a religious extremist group monikered “CYO Track.” Much of the training focused on hurling metal objects at high velocity.

SUMMER: The entire Boyle Cell made an unexpected trip to Orlando, Fla. in mid-June. Agency assets conducted 24-hour observation of the cell during this trip, observing a number of suspicious interactions. The small Boyle Cell members were observed in physical embraces (likely live drops) with disguised, and as-of-yet unidentified characters with the street names of “Mickey,” “Minnie,” and “Goofy” and various superheros and wizards. Analysts have pored over the situation, and can find no way the Boyle Cell could have financed this complex of an operation without the help of angels. Later in the summer, “Joe” attended one of the most dangerous gatherings of suspected insurgents seen in recent years, the 20^th class reunion of the St. John’s Class of 1993.    Throughout the summer, the Boyle Cell seemed to be preparing for a water-borne attack, as they spent so much time at the city pool, the children were said to have sprouted gills. “Joe” went so far as to complete a triathlon in late summer, and the sight of him in tight trunks was a clear threat to national security.

FALL: As summer closed, the Boyle Cell lost one of its most potent weapons, a ferocious 13 year old canine named “Emerald.” Considered the heart and soul of the Cell, the dog’s death cast a pall on the organization. Weeks later, “Joe” went back to his job in recruitment and training of young ideologues in Toledo, Ohio. Simultaneously, all three of the small Cell members began attending a madrassa known as “St. Aloysius.” This development was greeted with enthusiasm by “Joe” and “Katie” because it eased the daily logistical problems of infiltration and exfil. The Cell was broken up for a few days as “Katie” snuck out to eastern Pennsylvania with a subset of radicals informally known as the “Mom Friends.” “Joe” undertook a training regimen at the end of the year aimed at running 26.2 miles in the dead of winter. We expect he will be successful as he has already completed 13.1 miles but will monitor his sanity closely. Near the very end of the year, “Joey” was indoctrinated into the dangerous doomsday cult known as the “Cleveland Browns.” His excitement level was recorded by thermal monitoring equipment at Fort Meade, Md.

NSA will monitor the Boyle Cell into the foreseeable future. The Cell has made clear that they are thinking of their friends and family this winter, and are ominously hoping for a great 2014 for all.

2013 Christmas card

View the entire collection of cards.

“I can’t surrender. I don’t know how to.”

“I can’t surrender. I don’t know how to.” The Cap, Captain America #437 (1995)

Dark thoughts are seldom more than a nightmare away when youget diagnosed with cancer. They inhabit every corner of your mind. You can ignore them, you can play around with them, you can even taunt them from time to time. But they’re still there. All the time. Ask anyone who’s had a chronic disease, and they’ll tell you the same thing – the physical battle is child’s play compared to the cumulative mental toll. Over the past two and a half years, I have been incredibly, freakishly,and characteristically, lucky. I had a couple of physically bad months after the surgery. I had a bad July 2012 with the IL-2 treatment. But, more often than not, I have physically felt pretty damn good. Sure, a good mile split now is 10’15” in a 5K as opposed to 7’30” before I got sick- but most days, I feel pretty much like myself. It’s fairly easy to deal in the more or less abstract with the darker thoughts; thoughts of what’s next, thoughts of decline, thoughts of mortality. I guess that’s what made yesterday’s news difficult. The euphemistic “spots” on my lungs are still growing. They’re growing slowly, which is great –because growing fast would be bad. But they’re growing. And that means at some point, probably in the next four to eight months, I’ll have to go on a pill-form treatment. These drugs, called receptor inhibitors, have proven over time to slowthings down, and give you time. How much time is a matter of great debate; there are freakshow cases who have made it up to ten years on these things. The pills will, with near certainty, extend my life. That’s obviously a good thing! So I feel sort of like a whiny little shit for what I’m about to write. The most common side effects for this class of drug includes hand-foot syndrome; swelling, redness, and pain in the hands and feet. I’ve known this for a while. Knew it since I was on that trial back in 2011-12 that turned out to be placebo. And that’s why this moment has scared me for so long. Hand-foot syndrome will mean the end of running. I’m not ready to be done with running. Not by a long shot. I spent most of my life avoiding it, and when I found it, it saved me in well-documented ways. I can’t lose it. I just can’t. No matter how slow I am, even if my running at anything more than five miles has to be run 2, walk 2 (repeat for 2.5 hours), it’s what makes me who I am. When I cried yesterday, it was more about possibly losing running than it was dying, and yes, I know exactly how f***ed up that statement is. I can’t surrender. I don’t know how to. Our great hope is, naturlich, God. Our more proximate hope is for His help in getting on a clinical study of a drug called nivolumab. Itis a new kind of drug, called a PD-1 immunomodulator. It basically stops the ‘programmed death receptors’ which slow down the immune system. They’ve had a lot of luck with it on melanoma patients, and an early trial last year on kidney cancer looked REALLY good. My doc is working on one of these trials. He unequivocally  said that if he could get me on, he would. The problem is the study design. They’re looking for people who are virgins to kidney cancer treatment. Since I had the IL-2 battery in summer 2012, I’m not exactly a virgin to treatment. But there is still a possibility I could get in. The PD-1 regimen would be similar to what I went through with IL-2, but a little easierside effects, and even outpatient. I am full of hope that I can get on that trial. But I’m also still full of uncertainty, sadness, and maybe just a hint of depression right now. Basically, it’s this: I know that, ceteris paribus, I’ve got four excellent months ahead of me, maybe eight, where I can run, I can bike, and I can have adventures, and live a more or less normal life. I intend on packing as much asI can into the time between now and March. In a lot of ways, it is giving me a focus I have been lacking since just after the surgery. Meetings? Yeahhhhhhh, not gonna happen. Committees? After the one this next week, I’m taking a pass. Running? I’m running (if you can call what I do ‘running’) 26.2 miles by Valentine’s Day – it may or may not be in an organized marathon. Maybe it’ll be a group of my local friends and I huffing it out to North Baltimore and back, and being able to say that we DID IT (in less than six hours with any luck). Finding time to get in adventures with my family & closest friends? YES. Teaching stuff at school that’s REALLY important – and, my American studies friends, guess what I will NOT be teaching – the catalytic converter. Suck it, ODE! YES.That’s what I’m gonna do. Most of all, it’s this: Things are good RIGHT NOW. They might not be later. I am having a difficult time with this, but I’m tryingto remember what I teach in the World War II class: Hitler lost a lot of campaigns because he was unwilling to allow tactical retreats. Getting on these pills, when it happens, may be a tactical retreat that allows us to pursue strategic victory. But dammit, I sure would like to skip the tactical retreat, and go for a Hiroshima with the PD-1 drugs! I can’t surrender… I don’t know how to. The quote at the top is one of the all-time Captain America classics. He's dying, and hallucinating, and remembering battles past. Iron Man rescues him in the nick of time. And did Cap die? Maybe for a second. But in the end, even though it looks bad, he makes it. Because that's what Captain America does.