Miracle Drug: One Year On

"Of science and the human heart
There is no limit
There is no failure here sweetheart
Just when you quit"
- U2, "Miracle Drug" (2004)

One year ago today, a very nervous-seeming nurse set an IV line into my left arm, and I was infused with ipilumimab and nivolumab for the first time. In the year since Valentine’s Day 2014, so much has changed in many ways, but so little has changed in others.

When I sat down in that infusion room at the corner of the Taussig building, my muscles were still sore from the inaugural Winter Soldier run. That run anticipated the moment I’d sit in that chair and let the two-drug combo course through my body. More accurately, it anticipated the moments that would come after; a menu of possible side effects ranging from annoying to painful to frightening. No matter how much Dr. Rini and Laura informed me – and believe me, they DID inform me! – I don’t know if anything could have prepared me for the changes the drug would bring to me psychologically and physiologically.

The easy stuff to describe is the physiological stuff. It is sort of funny that only now, in the rear view mirror, do I truly appreciate exactly how bad the first four months on the treatment were. Those first four months, I was on the combination of two drugs. I wish I could provide you with a play-by-play of how things unfolded during that time, but a lot of it is(thankfully) lost to me – chalk that up to the ‘memory loss’ side effect. WhatI have, instead of fully-formed memories from last winter and spring, are vignettes.

###

It is the day after treatment. I meet Bernie Kosar. Oddly, I will meet him three times this year. It is a couple days later. There is a ton of snow on the ground. I go for a 5k run, because this is easy. No problem. I have dodged the side effects.

It is early March, and my sister and her family are in for my dad’s birthday. I’d just had my second treatment. They warned me that if side effects presented, I’d need to get in touch with Doc & Laura immediately to get on Prednisone. I am face-down and moaning on the rug in mom and dad’s living room for hours, and my head is splitting open, and there is a pain behind my eyes as if someone is trying to drill their way out from my brain. That night, I go on 60 mg of Prednisone. I don’t sleep a full night for a week. I stay on prednisone. I am still on prednisone.

It is later in March. The Prednisone is a blessing and a curse. Once it kicks in every day, it takes away the swelling behind my eyes,in my head, and in my spinal cord. My mornings are foggy. I am edgy and manic sometimes. I don’t sleep well. But the real blessing is that Prednisone has stripped away some of my filters. For too long in life, I have been a nice guy who goes along with whatever to avoid conflict. I am pushed a little too far,and I start calling things out as what they are. When the meds kick in, I return to passivity, and try to bring peace back. But the genie is out of the bottle in my head, and I know I need to make changes in my life, and stand up for something for once.

Winter drags into what should be Spring. It snows this April. The pain behind my eyes is getting worse,and I get dizzy near the point of passing out one night on a walk downtown. I haven’t run in two months now, my longest layoff in three years. I try a couple times and it hurts. I have appointments with neurologists, looking at swelling in my brain. I have appointments with ophthalmologists, neuro ophthalmologists.They peer inside my eyes, a window to the soul, and they find my optic nerves inflamed and angry, the cause of my blurred vision and dizziness and near faints.I drive to one of these appointments having to take breaks every 20 minutes because I am afraid of passing out behind the wheel. The next time, I have the good sense to have one of my best friends from work drive. I only realize now,in retrospect, exactly how scary it was for a month or so.

Spring is coming after a long winter, and it is May. They have withheld treatment for a while because of the side effects. We go to weddings, family functions, parties, and I remember little. My profession is driving me to the edge of madness, maybe even over the edge. Things I could deal with healthy, I simply cannot deal with sick. I get infused for the first time in a long time. Doc and I agree, we want to get all four doses of the double-drug cocktail in before the window closes. Situations at work spiral out of control. I get treated again before MemorialDay. Sam and I travel to Youngstown to remember Joey Vanasky, in what is probably the last Memorial Day observance from his boyhood church. I cry, and I cry more. It feels like everything is ending – graduation of some of my favorite kids; knowing I am leaving Rogers; friends moving away. A friend whois full of life dies in an accident. On the outside, I’m more or less maintaining a façade of normalcy, inside I am wondering if I can do this treatment for much longer. It is June, and I have my last treatment

And

Suddenly

The

Sun

Starts

To

Shine

Again.

They withdraw the ipilumimab, and maintain me only on nivolumab. The optic nerve swelling and light sensitivity goes away. The headaches begin to abate. Memory loss remains an issue; concentration remains a serious issue; Prednisone remains high, and I have incredible bursts of energy.One day I swim two miles, then go for a six mile run. Another day I mow five lawns before lunch, because I feel so good I just can’t stop. I herniate three disks in my back. I go up to the cottage and swim across the lake, but I can’t pick up my kids. That afternoon, I get a phone call – I’m going to Waite High School in the fall! I bid some professional and personal friends teary goodbyes, and despair that I’ll never see them again. I make new friends. A new school year starts, and purple and gold become my go-to colors. I start taking pictures of my new, very old school. I fall in love with the school and community, quickly, madly, deeply. Imake more new friends, and I laugh at lunch every single day. I go home happy every night. We have birthdays, anniversaries, holidays, and activities with the kids. Oh! Do we have activities with the kids! We deal with the fact that our little girl isn’t so little, and we adjust. I look at Katie sometimes and wonder how I got so lucky. We look at each other and wonder how we got old. I silently thank God that I’m getting older.

I go to Cleveland every two weeks for infusions of nivolumab. They run into a mostly-pleasant, if budget-draining, pattern: I bail out of school at the beginning of 4^th hour. I hop on 280 to the turnpike. I arrive in the garage at 9600 Euclid in Cleveland just in time.  They take my blood, I pee in a cup, I have a physical, I get an IV, we wait on the drug to get mixed, and they start the drip. About 30 minutes in, I get a terrible headache. About 15 minutes from the end, I feel like someone’s sitting on my chest. I pay for my parking. It’s rush hour. I inch my way toward home, and stop at E. 79^th to get a pork shoulder sandwich at Hot Sauce Williams. I’m not only the sole white dude in the place, I’m the sole white dude in a 1600-meter radius most nights. I think about segregation. I drive home. I top off Ingrid’s tank on the ‘Pike.Most nights, I pat her on the dashboard, and thank her for another job well done. If I’m lucky, Barry or Jaz are working at DQ, and I get that small cone with sprinkles at the end of the rainbow. I am tired. I drag ass the next day at work. I sleep a bunch. And by Monday, I’m ready to rock it.

It is winter again. I have been building my miles again after getting PT on my back. I’m swimming. I’m running. I am stronger again. I am becoming leaner again after nearly a year on prednisone. I decide to run and hike a 50-miler in June to raise money for Dr. Rini’s research. My scans are inconclusive for effectiveness of the drug; many other patients are seeing their disease recede into memory. I am jealous of them. I am on parish retreat team. We meet monthly, and we laugh, and cry, and try to put together a meaningful program. The Holy Spirit hijacks that program, and it ends up being absolutely magical. Some 50 people pray over me, and I feel like it may be the Vita-Rays that activate the Super Soldier Serum. My training picks up again,and I train with purpose.

It is the one-year anniversary of the Winter SoldierMarathon, and it’s the beginning of the biggest winter storm of the year. JD and Amy and I trudge out into a driving wind, and the spirit is on the wind,blowing ice pellets into our faces. I thank God that I’m able to get out and run, even if I'm slower than glaciation. I do smart stuff. I do stupid stuff. Sometimes I focus. Sometimes. I drift off, and can barely remember where I am. In the first two weeks of February, I lose my car at work… twice. I start looking to the future again. I think about those scans coming up in a month, and with faith and wonder, allow myself to dream that the tumors will retreat. I work hard to be more like Captain America, in body, spirit, and constitution. I thank God for all of you. For your prayers. For your posts. For your thoughts. I hope that I am worthy of them.