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.

Here is the basic results from the 2 days at the Clinic last week. If you read Joe's post of the day it is hard to believe we were both experiencing the same thing because I felt much better that it appears he did about it all.

Thursday- blood drawn and CT Scan. The blood draw and CT took maybe 20 minutes total but the IV of the CT Scan contrast and the liquid Joe had to drink took 90 minutes. It was in the basement of the R building and freezing, even more for Joe with the cold contrast.

Nice evening with Joe's cousin and his wife and daughter.

Friday- The appointment was for 9. We got there in plenty of time and even called back 20 minutes early. First the nurse took some vitals. The a medical fellow came in and did a history and physical exam. Either what he did or did not say or the way he was acting but we did not have a warm feeling about it. Very medical with no personality.

Finally Nurse Laura stopped in and she was great. Joe and her spoke on a phone a few times and she was asking for updates and remember so much about the personal part of the conversation. Very warm personal conversations... just the type of person you want for this.

Finally Dr. R came in. He is a nice guy too... but Nurse Laura appeared to have all the logics questions I had. He explained Joe's scans and what it all means.
In order to be part of the study there has has to be no sign of malignancy. Joe's scans showed 3 spots on the lungs that are a concern. One of the spots was there is March and showed no size difference (20-30% of the population have spots that mean nothing), a second spot was believed to be part of the rib showing up (CT scans take an image every 5 mm so what was before and after those 5 mm look like it was part of the rib), the third spot is what is questioned. Again because of the 5mm and where it is it could still be part of the lung arteries. It was not seen in the March scans.
Joe's scan are to be looked at by an independent board of radiologist to determine his eligibility of the study.
The study is this. There is a drug pazopanib that is already FDA approved to be use with Renal Cell Carcinoma (RCC) once the cancer has shown up in other parts of the body (mostly the lungs). Now they are studying the adjunct part. That means if a patient is given pazopanib after a tumor is removed but before RCC is detected elsewhere does it keep RCC at bay more so than those not taking pazopanib? This is a double blind study- could get active drug or get placebo- no one knows. It is for the trade name Votrient from GlaxoSmithKline. The total people to take part will be 1500; at the Clinic about 30. Joe would have to have regular appointments with the doctors in either case for more scans.

The standard of care is scan to look for growth so if Joe is not able to take part in the study we just watch the spots and have scan just as often as he would if part of the study (which could be no different if he is given the placbo). If the spots of concern do show RCC growth then Joe would most likely be started on one of the 6 drugs used to treat it including pazopanib.

Nurse Laura gave us some paperwork to read and stop back and ask question and sign to give consent to share Joe's scan if we wanted to go forward. We did all that. I might suggest that reading Tina Fey's Bossypants in an oncology area waiting room may not be a good idea. Not many people look happy there...but then maybe they all need to read it. I was also laughing while in the exam rooming when waiting.

Nurse Laura also explained to look at this as a chronic decease like diabeties. She said many of the patients take 1 of the drugs for years and don't have issues. She said Joe can drop out at any time, they will work with us on managing the side effects as well.

This is going to be a whack a mole game. We just beat it back each time it pops up.

Posted by Joe on his FB 5/28/11


Well don’tcha know I’m caught in a trap.
I can’t walk out,
Because I love you too much, baby.
Elvis Presley, ‘Suspicious Minds.’

We really don’t KNOW anything. Where we are, where we’re going. We don’t KNOW anything for sure, except that there are ‘suspicions.’

After a day of tests, and a morning of appointments, we don’t KNOW one more thing than we knew going in. What we have in the place of knowledge is suspicion, assumption, and uncertainty. If you know me well enough to be reading this, you know that if there’s one thing I deal poorly with, it’s that trifecta.

Way back on March 31, at Wood County Hospital, a CT scan was done of my chest. On that scan, radiology identified an extremely small ‘nodule’ on my lung. This Thursday, I had CT scans done again in a freezing cold basement at Cleveland Clinic. The nodule was still there. It hadn’t grown in two months, which is good. But its mere presence could, maybe, possibly, in some context indicate a spread of the cancer.

Maybe.

Might.

So now, my scans go off to an independent radiologist to determine whether the nodule is, indeed, suspicious or not. Please note – he won’t be determining if it’s actually cancerous. Just suspicious, or not.

If it’s not ‘suspicious,’ I’m a great candidate for a pretty promising trial of a medicine already used for people with recurrence of kidney cell carcinoma. If it is ‘suspicious,’ I don’t qualify for the trial, but will begin the ‘standard of care’ for recurrence. Maybe. Because it might not actually be recurrence. It might just be suspicious.

Yesterday was the first day I actually considered the fact seriously that this might come back. With apologies to the Replacements, “You can call me Hymie, You can call me Sam, you can call me Stupid, ‘cause that’s prob’ly what I am.” But I had completely convinced myself that I knew what was going to happen next. Dr. K got all of the cancer. Dr. R, my new oncologist and Nurse W – both of whom serve on national kidney cancer boards, and are literally the best in the world – would get me on the trial, the trial would work, and I, Joseph Boyle, would beat the odds.

I reiterate, for my sake as much as yours, that this may still be the case. Maybe.

But it might not. And even if it is, I know a lot more about the treatments they are using with increasing success, and in some cases, have blasted the cancer into complete remission.

I’m trying as hard as I can to bottle up the mights and maybes, to just live it one day at a time, and not get worked up about anything until something is actually known, which would be June 7, at the earliest. But I just can’t explain how difficult it is to keep my mind from going to those places. I know people mean well when they say ‘cheer up,’ and ‘stay positive,’ but it is just not that simple for me – it never has been.
Many of you have been praying, along with me, for a miracle. The more I think about it, the more I think Katie hit it on the head the other day: Catching this when we did, as such a fluke, was a miracle. Ending up in Cleveland with the best surgeon in the country for the removal; and getting an oncology team that specializes in precisely my kind of cancer… well, that’s rather a miracle, too. But I can’t help but to feel a bit greedy for another one, the big one, and I’m sort of ashamed by that. I want the big miracle; I want the cure. I honestly keep waiting for that appointment when they say that they have no idea how it happened, but I’m clean.

I know that, with time, over the next few days, my blood pressure will come down and my mood will improve. And my situation is by no means dire right now. It’s my mind that’s playing games with me, and I have to rediscover the peace I had after the surgery, and then after the blood clot. First and foremost, writing this is the last I am planning on talking about any of this for at least this long weekend. Writing is my therapy, and I just kind of needed to get this on 'paper,' and out there, and out of my life for a few days.

Thank you all again for your thoughts and prayers, and I hope you’ll keep them coming. I know God’s will shall be done no matter what, but I can’t help but think I’m meant to stick around for a while

Posted by Joe on his FB 5/21/11


RELAY FOR LIFE
My walking form right now is even worse than my running form ever was. I’m a little hunched in the shoulders to relieve pressure around the incision, and the further I walk, the more I bend over. Last night, as I slouched around the Bowling Green High School track during the Relay for Life, my gaze drifted down to the luminaries lining the track. I was taken aback when I saw the name on one of them – Dennis Hale, one of my favorite professors from BGSU, a guy who had a quick and easy smile, and whose care for his students shone through everything he did. A few steps later, the name of Chris Bartz, our Rogers athletic director’s wife. A few steps later, and the name Jackie Cocke, the grandmother of one of my oldest friends from back in GR. And on, and on, and on.

I was shocked at how many people I knew who had died from cancer – and as I made a second circuit of the track, I started running into a lot of people I knew. People who were wearing purple shirts. People who were survivors. It was a second shock – how many people I know who have survived cancer.

I’m not versed in the statistics, and frankly, the numbers don’t mean nearly as much as the qualitative data. We all know a LOT of people who have died from cancer, and we all know a LOT of people who have survived cancer.


UPDATES
• I went back to work for Thursday and Friday of this week. It was more than great to be back at Rogers. I missed the students and my colleagues terribly, and it was good to be doing something that felt normal. Standing in the hall and laughing with Brian, Eric, and Ron is better than percocet.

• Do not be fooled by my Nike+ updates that say I ‘ran!’ I am using my Nike+ to track my walking mileage, and trying to add a tenth of a mile to my distance each day. My pace is somewhere in the neighborhood of 27’30”. A few people have private messaged me with atta boys for getting out and running – but I’m not quite there yet!! Currently, I can walk about 6/10 of a mile before I’m gassed.

• The walking (and pain therein) is a big part of the reason for this next bit of news: This past week, I gave up my spot on the Normandy Institute this summer. The decision, once I took my heart out of the equation, and thought with my brains, was sort of a no-brainer – especially when they guaranteed that my student, Corey, would still be able to go and will be paired with a couple of great adult partners.
I really wanted to convince myself that I could do it, but reality won this round. The institute is less than four weeks away, and would require at least three miles of walking on each outing, up cliffs, across beaches in France, getting to the Metro, on the Metro, to the next place, etc. It’s a stretch for me to believe that I would be able to do that AT ALL, much less comfortably in this time frame. And then there was the complexity of the medical issues: What if I got cut? What if I took a spill? As good a reputation as the French health care system has, do I really want to risk a situation where I have to spend a week in a hospital overseas when my French is limited to finding restrooms, buying train tickets, and ordering lamb? So, in consultation with the trip’s organizer, we agreed it was a bad idea for me to take the trip this year after the blood clot complication. But should the institute’s sponsor choose to fund it again next year (which seems likely), I am guaranteed a spot. I’m at peace with the decision – I was exceptionally nervous about traveling in this condition. But I’d be lying if I said I wasn’t a little disappointed. I’ve wanted to pay my respects at Uncle Paul’s grave for so long, and this part of history is so resonant with me, that I wish badly I could go. So I’m praying for good health a year from now, and a wildly successful institute so the sponsor decides to fund it next year!!

• Between not going on the Institute trip, having to cancel our wedding shoots since I can’t even carry the freakin’ bag, and having had to resign my course at BGSU, all of a sudden my summer is a lot more free. For the first time in five years, our weekends won’t be dictated by other peoples’ weddings. We’ll be able to get up to the cottage more, over to Aaron and Kathy’s, and spend a little time in DC with Katie’s sister. I’m rather excited at the notion of being able to spend this summer almost exclusively with family and friends.

• We go to Cleveland Clinic this coming Thursday and Friday to get a battery of tests, and then meet with my oncologist. I’m hoping to get on a clinical trial for a drug that is intended to ward off recurrence. Thus far, nothing science has developed has reduced the 40-50% recurrence rate of renal cell carcinoma. I am all about whatever can improve my odds, and am praying that this might be part of my miracle.

• On praying: Since diagnosis, I have sort of formalized a prayer regimen every day for myself. But the past week, I’ve been kind of disappointed with myself, and feeling as if my faith is weak. When all of this happened, my prayer had an intensity that I’ve never felt before. Now, as life gets more ‘normal,’ I feel that my prayer is again becoming somewhat rote, and lacking the urgency it had when I was in crisis. It’s shameful, and I suspect, not unique to me, that faith and our relationship with God becomes so much more tangible at our darkest hours.

It should come as no surprise I’m not the writer Joe is. I use him as my copy editor on the important things.
Joe’s pain is much better. He has increased his walking to a mile a day. No cane or walker. He can start driving when the Percocet is no longer taken.
He is up and down the basement steps a few times a day (we have a one story house). He has done dishes a few times, made his own lunch, helped with dinner and folded laundry. Just about to the point where he can help with more housework but also well enough to go back to work. That said…
Joe went back to school today (but I expect him to be very tired when he gets home) I’m sure he will write more about it. This morning was the senior class awards ceremony in which the Boyle family scholarship was awarded. Last year when Joe won BCSN Teacher of the Year it came with a $10000 endowed scholarship in his name.
The blood work is still not coming back with a constant level. Joe takes the Coumadin each day and the dosage changes depending on the most recent INR. I had to remind him once to not eat salad (greens can effect IRN levels). The transition from Coumadin control done by the Cleveland Clinic has been transferred to his local doctor. During this whole blood clot issue Joe's general practitioner left the practice he was at so it took a little longer to get local care set up. We are happy with his new internist.
The Coumadin thins the blood- which we want so blood can still move while the body works on dissolving the clot-but it means he has a chance of bleeding. Because of that he can’t use a strait razor. I can’t wait for his electric razor to arrive from Amazon so he can shave and be done with facial hair.
We have settled into the new “normal”.