Joe posted on his FB 9/13/11

On one of our first trips to Cleveland Clinic in April, Katie said that she saw our fight against cancer as being something like Whack-a-Mole; we’d probably beat it down every time, but something would crop up in another place.

The past month, we’ve been hammering at the same mole over and over again: Kidney function. When last we updated, I’d seen my creatinine levels climb up to nearly-dangerous levels, at which point they pulled me off the experimental drug, and my kidney function returned to a normal level.

So this morning, I had to get a full panel (whatever the hell that means) done at St. Luke’s. Sure as anything, my creatinine level was high – higher than it’s ever been in this adventure. This afternoon, my trial nurse called to say they’re pulling me off drug for a week.

To say that I have mixed feelings is to undersell the situation. On one hand, I’m grateful that we know how to keep Los Uno Kidney functioning. I’m also grateful that, at least for the next week, my fatigue and memory loss ought to improve. But I’m more than a little frightened to lose that chemo security blankey for a week.

Obviously, this is why they do drug trials – to find out if the cure is worse than the disease. And I’m proud that whatever happens, I’m helping to advance scientific knowledge. But I kind of feel like my body is my crappy old car right now. My Corolla’s engine light has been on for a year or two; it’s the mass air flow sensor. I clean it two times a year, the mechanic says there’s nothing to worry about, but as you drive down the road you can’t help but notice that light, and estimate the repair payments down the road at some ill-defined point in the future.

I keep trying to convince myself that my body is that Corolla – it may rust, the check engine light may be stuck on, the steering wheel might be a little grody, and the upholstery’s seen better days. But under the hood, as long as you keep up with the routine maintenance, it’ll run forever. Please, God, let my body be a Toyota.

Good news from Joe's Cleveland Clinic super hero army. His BUN and Creatinine (indications of kidney function) levels are better after being off the medication for 8 days. So it looks like he does have the drug (Pazopanib) (but we can't say for sure of course) and not the placebo but it is also means when he takes it it hurts the kidneys. Just yesterday there was an amendment to the study to start new participants at 600mg instead of 800mg. So with all of those indicators they started him back at 600mg. Local blood work next week to see how it all looks.
Pazopanib is also interacting with Coumadin. His INR (blood clotting factor) results were such that they had to keep increasing his Coumadin over time to the height of 7.5mg. When he went off Pazopanib his INR went very high- high enough that they had him stop all Cloumadine for a few days. They now have him started on a lower dose and checking again next week when the other kidney function tests are done.
 A few things Joe noticed the 8 days he was off drug is he did not feel as tired-even with school starting. That would explain why I have not found him in a puddle at the end of the day like I expected. He also noticed his memory was better. He can't say for sure when it started while on drug but once off it was better. When Joe can't pull baseball stats and dates and explanations from history out of the air then his memory is shot.
Ellie and Joey started back to school last week. They are excited for cross country. Joe is also helping coach cross country this year.
Mark is enjoying his days at the sitters without his pesty older siblings there.
We will all need to run after stuffing ourselves at the Fulton Country Fair this weekend. The best fair in the land!

Posted by Joe on his FB 7/31/11

I am really embarrassed by how long it has been since I have written an update about my condition. One of the most important lessons through my illness and recovery has been to make time for friends and family, and it’s crazy how once I started feeling better, I started losing sight of that somewhat. So I wanted to take some time to update everyone, because it’s really been a pretty fantastic summer, all things considered.

We’ve been wearing a rut in the Ohio Turnpike since I got discharged, and especially since I got on the clinical trial. Every two weeks, we make our little trip out there. And every two weeks, Katie and I get to explore a little more about and around Cleveland.

The doctor visits, since Memorial Day, have been non-threatening affairs – they take a little bit of blood, a little bit of pee, we get together and talk about how I’m feeling, and all of us make a guess as to whether I’m on drug or placebo. I honestly don’t know; I am tired as hell most of the time. I have never, ever been a napper – and yet most days I have to sneak a little nap in just to operate at a bare-bones level. I’ve had some acne breakouts, which wouldn’t be news… twenty years ago. So, there are some small signs that could be side effects, but none of the big, bad ones. So I’m either the luckiest son-of-a-gun in the world on the side effects, or I’m not on the drug. But no one knows, and I’m OK with that now. It just is. The trips to Cleveland have been made fun by our little adventures along the way. Katie and I hit up a food truck on the edge of sketchiness on the East Side called Seti’s Polish Boys. It was everything my cousin Dan promised it would be; and I should be embarrassed to have eaten something so sinful just minutes after leaving a hospital. When the kids came with us, we stopped at Huntington Beach with the kids on the hottest day of the year, and they can now OFFICIALLY say they went to the beach over summer vacation!

I’ve been spending my weeks in sort of a little routine. Mondays and Tuesdays I do a lot of work for school. I have one wholly new class this year – an OGT 911 course to help our at-risk kids. It’s a one-quarter class, and will be a condensed version of a class I taught the last few years. That one’s pretty much done; daily lesson plans are complete, playbooks are done, everything’s sent off to Printshop. The other course is much more daunting – a reset of AP GOV. I will be teaching AP GOV through distance learning technology to a class that could involve as many as 50 kids using a brand-new technology, with everything THAT entails. This is the course I am very, very nervous about.

Wednesdays, Thursdays, and Fridays are a lot more fun. The kids are home with me, and we do little ‘Daddy School’ assignments and field trips. We’ve been to the Zoo and made a movie about different species, we did a treasure hunt throughout BG, we went to the Fossil Park in Sylvania and learned about prehistory and geology, we went to Toledo Botanical Garden and BG’s Simpson Park to learn a bit about flowers, and Joey has become a little Scorsese in making movies.

The summer has had a few down moments; the new contract at work included a pay cut and a HUGE increase in medical expenses – not what you need when you have a few appointments a month and twice-weekly blood draws. BGSU also fell through this semester, with not enough courses to go around to adjuncts, so that took a bite out of the budget, too. Add to that a couple photo jobs I was finally ready to shoot that fell through… and things could be better. But I’m not nearly as worried about that as I probably should be, and not as worried as I would have been a year ago, or certainly as worried as I would have been three years ago. But by the same token, if a different district comes a-knockin’ over the next year or so, I’ll be listening very, very, very closely. Very closely. Extremely closely.

Running has been slowly, but steadily, improving. Last night I ran/walked a 5K in under 40 minutes for the first time since surgery. I felt horrible, but IT felt great! I understand full well that I’m not going to see a seven-minute mile again, but it sure feels good to just improve a little bit at a time. My current running routine is a run .15 mile, walk .10 mile, repeat for three miles. I’ll stick with that through this week, and see how the spirit moves me next week. First two miles are pretty easy, but the third mile gets pretty rough on me. I am running in minimalist shoes, and with a dippy smile on my face every step of the way. I may have some pain when I run, but I shit you not when I say that I am happier than ever when I am out there on the pavement or trails. I hope my recovery and running, however long I am able to keep it up, serves to show the power of God, the power of love, in our lives. When I find myself really hurting, I just focus on the love of running, the love of life, and somehow, I make it through. It’s pretty awesome, it’s way more than exercise.

By far the biggest development as it relates to my recovery this summer has been an amazing place in Toledo called The Victory Center. I got clued into this place by my colleague and friend, Pam D. It’s a place for cancer patients and their families to plug into sort of the ‘third leg’ of the stool in cancer care. The medical professionals and your personal spiritual guides are two of the legs, but TVC focuses on something that comes from both of the those places; through meditations, spiritual journeying, reiki, sound therapy, reflexology, and most importantly, a sense of community with those who have been on this journey already.

What’s been really amazing about TVC to me is that it seems to be bringing together a lot of the disparate threads of my experience thus far. When everyone’s telling you the same thing – even if they’re using different words – it’s probably worth listening. The main thing comes down to this: From the beginning, from Fr. Mark, to Kate, to the nurses on the 9th floor at Cleveland Clinic, to the book “Dealing with Cancer” from Cecilia Miller, to the guided imagery guy at TVC, to the meditation counselor, almost everyone comes back to a couple of really simple things to understand, but harder to live out: Cancer is a spiritual illness as well as a physical illness, and we are our own best doctors in dealing with that aspect of it; by visualizing the amazing brightness and power of God, and channeling it to the effected parts of the body. And further, it all comes back to the very first thing Fr. Mark said to me when I was first sick in those last days of March: God is love. The opposite of love is fear. Where there is love, there cannot be fear. There cannot be DISS-ease, or as we commonly say, disease. Filling oneself with love, with that amazing light, is the surest way to help ourselves deal with cancer.

Thank you all again for your friendship and your prayers. I love you all, and your continued friendship remains the clearest evidence of God’s love for us.

Check ups.

Joe has had a few check ups since starting on the trial medicine June 15. The visits have included urine and blood tests and a visit with Nurse L, Dr. R and various medical staff. He had an EKG done at yesterdays visit.
Some issues that could be seen as side effects or just life since surgery. It has mostly been fatigue. Could be late summer nights and early and long days home with the kids. Some concern on kidney function levels but the weather could be part of it.

We took the kids with us this time. They have felt left out and wanted to see what we talk about.
Don't let this picuture fool you. They were not angels. That is all I will say.




















We made a 20 minute visit to Huntington Beach. Even at the beach it was still hot.






















Ellie knows more about the issue of cancer. She wanted to show her support for Joe. She used washable (thankfully) markers to design an orange ribbon.















If you want to show your support, but don't feel as cutting edge as Ellie, you can find some support items here.

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.

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.

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.