In Joe's words

Post by Joe on FB 8/6/12

They told me what I should expect from Interleukin Two in the appointments before I started treatment. In fact, it was pretty much a day-by-day itinerary of what side effects I should expect at what point. At some level, I understood all of this. Words like 'nausea' and 'hallucination' are words I believed I understood, and frankly, at certain points of my undergraduate experience, they were just part and parcel of a weekend poorly spent.

At a deeper level, though, I think I really thought I was going to avoid all of it. After all, I had a Captain America shield. But what happened over the past week was beyond unpleasant. And now that I know that the doctors really weren't kidding, and that Super Soldier Serum has not rendered me immune to the side effects, I can say that for the first time in our year and a half of fighting renal cell carcinoma, that I felt like a cancer patient for the first time. 

We reported up to UM Medical Center on Monday to begin the treatment, and just as the doctors said, that first day wasn't bad at all. I walked a mile and three quarters in the loop around the eighth floor, read a book, watched some movies on my phone. It was like vacation, except with a central line inserted in my neck. The next day wasn't so bad, either! I finished up my last bit of grading for the BGSU class I was teaching, read a little more, walked a little less, and that night, developed one hell of a headache. That was the pebble at the beginning of the avalanche.

Wednesday was kind of bad. I only got out of bed a couple times, and I felt this lingering stomach churn. It's not like the nausea I was used to. That generally came and went in a few hours, culminating in a nice, satisfying vomitthon, some cold sweats, and waking up the next morning feeling OK. This stuff just hung around, all through Wednesday and Thursday. Twice, it got me to the point where I was sure I was going to hurl, but it never really came to fruition. I didn't get out of bed at all Thursday, and they started mainlining more and more drugs down the hatch; drugs to deal with long term nausea, drugs to deal with short-term nausea, drugs to deal with the headache, drugs for this, drugs for that, and then, the drugs to build up my BP, which had crashed to 75/40-something because of all the drugs. The fun part about that drug was that now I had to get disturbed every 15 minutes for vitals.

Thursday night into Friday was the worst - just like they said it would be. I can't really explain this, but those last two days I was utterly, completely exhausted... and yet completely unable to go to sleep. When I did get sleep, it was accompanied by the most vivid, detailed, complex dreams this side of "Inception." And while I'm on this topic: Why is it that these dreams included friends in trouble, finding corpses, and massive vehicle crashes? If I must have detailed dreams, can they PLEASE include any combination of large yachts, prime rib, Bermudan beaches, my family, and/or Princess Leia?

They discontinued treatment after the early Friday one because of the BP crash, and my general physical and psychological state, which was somewhere in the Crispin Glover neighborhood. They held me the rest of the day, and into Saturday, until they were sure I was stable, and then sent me home with 20 puffy new pounds of water weight since my lonely little kidney basically shut down after Wednesday.

We came home by way of the Sisters of Notre Dame mother house, where sister-in-law Maggie Hagan was having her baby shower, and I got to see my sibs-in-law and Ellie for the first time in a week. From there, we went home and I got BIG hugs from Jophus and Mark, who then headed north with Papa so Katie and I could have a quiet house to recuperate in. Saturday night was pretty rough - I had some fluid in the lungs - and Sunday I called Dr. R, who got me a diuretic that cleared up the lungs. I pretty much spent all of Sunday on the couch with my dad watching the Olympics and trying to keep the headache down. Last night, though, was kind of a turning point in a number of ways, the most important of which was that I was able to find a spiritual centering again. The whole time at UM, I prayed - but it was the prayer of a person who is simply saying words while struggling through the experience. I couldn't find peace except in small, small moments. Last night, I was able to actually have that peace and quiet for a sustained period to make a real connection. 

Today was the first morning in almost a week that I woke up feeling mostly human. I got about six hours of sleep, which is two less than I generally need, but four more than I'd been getting in a single throw for quite a while. Grandma and Dad Slaw came over to hang out with me and experience the spectacle of the tree cutting in the backyard.

Watching that tree come down today was really hard. It's hard not to find symbolism in nearly everything when you're in the middle of something like this. Between Joey's fish dying last night, and the tree going this morning, I felt a profound sense of mortality. But as Grandma and I watched Jeff Mantel and his crew expertly take that tree apart - and as we saw how rotted it was, and what a danger it possessed, my frame of mind shifted. The tree - as beautiful as it was, as much it killed me to see it go - was a danger to our home and our safety. It was painful, and it's going to take adjustment, but we're better off having been through it. I'm choosing that metaphor as we look at going back to UM next week. Words cannot express my anxiety for going back - they have already told me that week two will be much worse than week one. And week one was pretty much one of the worst weeks of my 37 years on this Earth. I took another sign this morning, too, and that was the successful landing of the Mars rover. Everything had to go right at a million different points - and it did. And it can for any of us.

I sure do appreciate all of your thoughts and prayers throughout all of this. I apologize to anyone whom I haven't called or texted or emailed back to since Tuesday. Those who know me know that I'm a talker - but I just haven't been able to even talk much until yesterday and today, and this is the first time I've gone down the stairs to use a proper keyboard.

Love  to all - and stay in touch!