Monday, June 20, 2011

Posted by Joe on his FB 6/17/11




The past two or three weeks have been a case study in how the mind is so often a more powerful influence on health than the body.
In my last post on Memorial Day weekend, I had just come back from the Clinic, where a CT scan had identified a couple of troublesome spots on my lungs. Well, we waited from the scans on May 26, through to the night of June 7 – Rogers’ graduation night – when I got a call at 10 p.m. from my nurse, who said I had been accepted into the trial. Acceptance meant that an independent radiologist had confirmed that the spots on my lungs were, in fact, not cancerous.
It would be almost impossible for me to summarize my feelings during that interim period where we didn’t know anything about the suspicious spots on the lungs. It wasn’t so much a feeling of fear, as it was a feeling of weight, especially as I read through some stuff the Clinic’s cancer library had about survival rates for recurrence on the lungs. In a lot of ways, I was mentally adapting to the possibility things may not get better.
But after Nurse L’s phone call, everything changed – even though nothing had really changed. After I knew I was ‘clean,’ and on the trial, I started thinking like a healthy person again. Suddenly, I realized my best days could be ahead of me, and not behind me. Nothing physically had changed, but mentally, things were better. The way I walked, the speed I walked, the way I slept all changed, even though nothing had changed. I can’t say enough how oddly the mental part of this disease operates.
So after getting the all-clear on the lungs, we had to schedule a flurry of doctor’s appointments. The first was this past Wednesday, and we arrived at the Clinic at 11:15 for blood work – I commented to Katie, “I wonder how many times I’ve been stuck with needles in the past nine weeks?” Seriously, it’s got to be in excess of 100 times in 60-odd days – maybe more. Then we had to jet over for an EKG, then down to the basement to the coolest damn place I’ve ever seen, nuclear medicine.
Let’s be honest, I’m a sucker for really official-looking notices of danger. As the tech walked me down the hallway, there were signs that looked like fallout shelter warnings, and the biohazard symbol from “28 Days Later,” and then there was a sign about some kind of field-or-another as I was on my way to be injected with Technetium-99.
IT’S A RADIOISOTOPE THAT EMITS GAMMA RAYS. That’s when I realized that I was about to become a superhero. Gamma rays? That’s Bruce Banner! Or Peter Parker! And field stuff? Oh yeah, that’s Jon Osterman, about to become Dr. Manhattan. I admitted to the tech that, frankly, I was totally stoked about being injected with this shit.
“Well, then, you’re going to LOVE this,” she laughed, as she filled out a card. My ID card – my card that notifies law enforcement that it is in fact my NUCLEAR BODY that is setting off their delicate sniffers of atomic particles. Card-carrying Atomic Man? Oh, helllllllll yes!
When I came back out to the waiting room, grinning ear to ear, Katie rolled her eyes. That did not improve when I attempted to fire particle beams from my fingertips in the hallway. Also, much to my disappointment, that did not actually work.
So, I was high on my nascent superpowers when we went to lunch on the Clinic’s rooftop terrace. Frankly, it’s a minor miracle I didn’t attempt to use my potential powers of flight (or at least, jumping real high) while we were up there.
After lunch, we went over to the Taussig Cancer Center. Everytime I am in the waiting room it gives me pause, because I’m not sure if I look as sick as most of the other people there, and I deny it – or if I am looking at the ghosts of Christmas future. It’s not exactly the line for the Millennium Force.
We met with the docs, and there was a problem – one of my blood clotting counts was too high – my blood was too thin by about 2 percentage points to get on the study. They sent me out for a re-test on the blood, and the bone scan (the raison d’etre behind my nuclear injection earlier). I fell dead asleep during the bone scan, much to the tech’s surprise – she said most people get nervous and fidgety. I suppose if I had been any more awake, I might have been, too.
After bolting over there, we dashed back to Taussig to meet with Dr. R and Nurse L again. By this point, my mind was playing games again – preparing myself to accept the fact that I’m not on the trial, and facing more uncertainty. So imagine my delight when Nurse L comes in with her hand in the universally-accepted position of high-five. My blood count had come back down. I was within the trial range by exactly three-tenths of a percentage point.
So now that it was ‘game on,’ we had paperwork to go over, forms to learn about, pills to get, etc. Seriously, we had a tote bag full of information about the drug, and samples of stuff to deal with the side effects. So right there, on the second floor of Taussig, at 5:30 p.m., I took my first dose of The Stuff. Last night, I took a second dose. In another hour, I’ll take dose number three. So far, no side effects. I am not sure if that is a testament to how my superhero body does a great job of warding off unpleasantness – or if I am on the placebo. Time will tell. I sort of wish I would feel some side effects just to know for sure… but by the same token, I’m not in the business of rooting for unusual ‘movements,’ nausea, fatigue, blisters, mouth sores, etc. So I’m just praying that whatever is happening, it’s the right thing.
I go back to Cleveland on Tuesday for a brief check-in to make sure there’s no underlying weirdness happening that I’m not sensing. But for right now, life is good. Really good. And that’s about all any of us can ask for.

Thursday, June 16, 2011

Happy Birthday to Mark!





Happy Birthday to Grandma C! She shares her birthday with her great grandson.






We were back in Cleveland Wednesday for Joe to have a few more tests and meet with Dr. R and Nurse L to actually start the drugs! We made it just in time and I dropped Joe at building R for his 11am blood draw then parked the car. I meet him in the J building and we headed to his EKG then to Neuro Med for the prep for the full body bone scan. He had radioactive iodine injected into his veins. It makes him slightly radioactive for two days. He has to flush twice after using the bathroom. He had many jokes about Dr. Manhattan and the card to he carries incase he sets off alarms radiation detectors that Homeland Security has at airports.
After the prep we had lunch on the Rooftop.
We went back to building R to meet with Dr. R and Nurse L. We were told there was a slight problem. The blood work done earlier had a result that was 2 units higher than stated in the study parameters. It was determined they were going to draw blood again in hopes of better numbers. We had a small window of time to get it done and get back to building J for the bone scan. It was close and we had less than 5 minutes to make it. We would have not been 3 minutes late if we did not have to wait for elevators. Joe had the bone scan done and even got a nap in during the process. I was very jealous because I had been trying to catch a nap all day in the different waiting areas.
Again back to building R in hopes that the blood work results were better. Nurse L gave Joe a high five and he made it by .5. After one last hurdle, 3 good pressures 2 minutes apart, Nurse L released us from the exam room for a few minutes while she worked with the pharmacy to get the drugs. She had asked them to stay longer in hopes Joe could still get the medication. Once back in the exam rooms she went over the dosage, the tracking of side effects and management of side effects. Joe took his first dose then (1 hour before eating or 2 hours after) and we were on our way much later than we planned but all worth it.
We started home and stopped to eat an hour after Joe took his pills.
No side effect issues yet. I almost hope we see something so we can maybe have some idea if we have the placebo or not.

Thursday, June 9, 2011

Just a quick update that we heard late Monday night Joe was accepted into the drug trial. While it is great there is a chance he will get the good drug to keep the cancer cells from growing if there are still some around, it is even better than the CT Scans did not show any signs of concern.