Day 1

We arrived Monday about 9:30 for his appointment for the central line insertion. The doctors talked him into the IV sadation instead of a local. When I was called back to see him after the short procedure he was still a little loopy. We went to admitting expecting to have to wait for a bed but they were ready for him on the 8th floor. He got settled, met with the staff, changed into his Captain America shirt, hung the things from the kids and the Captain America shield. We past time waiting for the 4pm dose.

He measured a loop of the floor finding two loops would get him an 8th of a mile.

 Dose went fine but he did say there was a smell or taste to it (it was all in tubes, bags, and IVs so I don't get that.

He was to late to be in the food service schedule so I got him some food. I stated until the nurse shift change and left about 8 (wanted it to be light out while I was looking for Erin's place- where I was staying for the night).

Joe texted later in the evening to say he did over a mile walking the floor and he had a bad headache.

Joe had a hard night with little sleep and the side effects hitting him about 4 hours after first dose. BP is low and how things smell bothers him. He had a little breakfast.

He had a dose at 4pm yesterday, midnight and at 8 today. He is trying to sleep now before next vitals check wakes him again.

Please excuse typos as I'm typing this out on my phone.

Thanks everyone for your prayers and support.

The worst flu ever

We are going forward with High Done Interleukin 2 (it is used on kidney cancer and skin cancer). It makes the body's immune system work overtime to make more T cells and Natural Killer Cells to kill the cancer cells. Joe is told to expect the flu x 10 (and will be worse after a few doses). There are a whole host of side effects (capillary leakage which leads to low blood pressure, kidney shut down thus water gain and more work for the heart, heart A fib, greater risk of infection and less than 1% of death/coma I'm trying to ignore). These side effects will be controlled and may skip doses because the point is to to make him as sick as they can which out crossing the line. Most side effects go away once the IL2 is out of the system. It is administered via central line every 8 hours in 15 minute long infusions. The first dose will be Monday July 30 in the afternoon once the central line is put in that morning. Because of the risk of infection visitors are limited (and they have posted visitor hours where as the CC did not). Since his last dose will be Friday afternoon 8/3 it is not likely that he will be released until Saturday morning meaning I don't think I'll be at Maggie's baby shower. I'm disappointed because I want to celebrate my soon-to-be-here nephew (and I love party planning). Also, I think I'm the only one who knows the name they have chosen so it will will be harder for people to pay me to disclose the name :). I'm still doing planning work before it and I hope I can still be there but right now Betsy said they will take care of it (with my protégée Ellie). Betsy is going to be at my house for the week with the kids. Joe is told to expect to not be moving from the couch for a few days. He does want to try to stop by the Couturier gathering and then crash at Mom and Dad's. I told him we will see. At the very least the kids will be there and I want to stop for a while too. Right now Joe to focused on the grading for the class he teaching online for BGSU and getting ready for the new school year. As always, Joe’s sense of humor is there. Part of yesterdays’s appointment was confirming what was already know in CAT scans. He had never had one done of the brain before. He was cracking jokes like “Results of brain scan: I have one.” We do it all over agin Aug 13 for another week. That may mean Joe will not be teaching the first few days of the school year which starts for him Aug 28.

Signs

I can't say it any better than Joe: "Our trip to UM was informative; the IL-2 treatment has significant pros (4x higher cure rate for patients like me vs. general pop) and significant cons ("My job is to make you as sick as I can"; less than 1% mortality, coma). If you can spare a prayer for wisdom for us as we choose our course of action, it would be greatly appreciated. Also, FWIW, what's the first vanity plate we saw driving away from campus with questions swimming through our heads? "MERICLE"" Then today I saw these two quotes in my random bible quote app "Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests know to God." and "Trust in the Lord with all your heart, on your own intelligence rely not; In all your ways be mindful of him, and he will make straight your paths." I have my issues with business of the church but when you get beat over the head three times you can't keep questioning.

Unblinded

Joe was unblinded from the study he had been taking part in at the Cleveland Clinic. We were shocked to learn he has been on the placebo and not Panoxipib! Not sure what explains the side effect that changed each time he was taken off the drug when it looked like kidney function was being compromised but not much we can do about it. What this means is without any drug to stop the cancer cell the growth was very little. Second it removes one the obstacle that could have prevented him from having treatment with IL2 at UofM. Finally it means those class of drugs are still available for treatment if needed since he has not receive them. We have an appointment at UofM the first week of July.

Bumps in the road

posted by Joe on his FB 6/8/12 If you’ve followed my story for the past year, you know that when I had CT scans just after surgery, two or three small ‘anomalies’ showed up on the scan. At the time, my oncologist said they were possibly cancerous, but since we hadn’t seen images of my lungs ‘before,’ and they were too small to biopsy, there was no way to say for sure. In my November scans, the spots looked about the same; ‘clean enough’ he said at the time. In February, he noted that they had perhaps grown a bit more from November, but were again too small to biopsy. Today’s scans, compared to the initial May 2011 scans, showed that the spots have indeed grown – the largest of them from an initial >2mm size to about 6 mm now. That growth, he concluded, makes it certain that the anomalies are indeed kidney cancer, growing in ‘small volume’ in my lungs. Our next course of action will be to contact the University of Michigan to see if I qualify for a battery of an immunotherapy called high-dose Interleukin 2. You can read more about it here: http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/interleukin-2 My doc is decidedly in favor of going with IL2. It’s the only thing ever proven to CURE kidney cancer, in 1 out of 20 patients. If it’s gone in the scans after that treatment – it’s gone for good. And even if it’s not, Clinic has a few other major trials spooling up that have a lot of promise. And even then, there are some notable success stories of people in situations like mine (young, relatively healthy) who are going on seven years on existing drugs like sutent. My doctor and nurse wholeheartedly support me continuing with the Normandy Institute through the end of June – he said it’s not ‘urgent’ right now. But by the same token, he wants me to get in to meet the IL2 guy at UM as soon as we get back, hopefully to begin and end the 3-4 weeks of treatments (which are NOT characterized as pleasant) before the beginning of school. I guess if we were the New York Post, the headline to this thing would be “KIDNEY CANCER RETURNS; BOYLES IN SHOCK.” Don’t get me wrong, we are in shock, and this is obviously not news we wished to hear. But saying that my cancer ‘came back’ is kind of like saying (insert your favorite fad here) came back… who said they ever left? We now know that those spots on my lung in May 2011 are the same things there now. They didn’t change. The only thing that changed was how we’re referring to it. What used to be anomalies are now cancer cells. I still feel great. I still plan on having fun. I’m probably going for a 3-4 mile run tonight or tomorrow morning before M’s birthday party. Life goes on. The big change is not so much physical, as much as it is girding up for another hospital stay in July or August; a new hospital to learn; a pretty brutal treatment cycle; a new billing nightmare to navigate. The devil’s in the details. We sure do appreciate all of your thoughts and prayers, and we know we can count on them in the future. PS: If I am indeed cured at the University of Michigan, I, Joseph P. Boyle, do solemnly swear, that I will BURN every last OSU article of clothing I own, and will sing "Hail to the Victors" upon request.

Maintaining

I think it is a good sign that we have not updated here in a while. No news is good news!

A few weeks ago Joe has some pain in his leg and was worried about blood clot issues. After conferring with his vascular medical staff, they wanted him to drive to the Clinic for a checkup. It was suppose to be an afternoon appointment but they suggested he come earlier to avoid it getting to late in the day. He left school early and made the drive. It is funny how he can read staff because after his ultrasound scan when the tech told him he could get up on his own and walk out to the waiting room he knew it was ok. The tech spoke with the CNP and let Joe know he was ok to leave. He got lunch while he waited for a call from CNP. She said his leg looks great! The lower leg is al clear but there still some clotting resolving in the thigh.

This past Friday Joe has schedule check up with oncology including CT Scans. His first appointment was for 7:30am so we stayed the night before. Blood work then the long hour for infusion for the scan. Since the contrast used to the CT Scan is hard on someone with one kidney he has to have extra IV fluids to help the body flush the contrast. He has an hour to sit while cold IV fluids are pumped into him and he can't move his arm the way he wants to. Once he was called back to the scans it did not take long. We got some lunch and ate at the Rooftop Terrace watching the ever changing weather in Cleveland that day.

When it was time to see Dr. R, the nurse has Joe fill out paper work for the study and have a quick check over by one of Dr. R's research fellows. Then Dr. R came in. I expected him to have papers with images of the scan but he did not which was nice. He said the two spots on his lungs are still there but there is no much change. Not enough to change treatment or even for a needle biopsy. If we ever get to that point and they do find cancer then he gave us some idea on what treatment would be.

We also met with vascular doctors about his blood clot that developed after the surgery. Everything looks great there as well other than Joe can’t run as long as he once could because of discomfort in the leg where the clot was. Joe will be able to go to France this summer as part of the National History Day Normandy Instituet(http://www.nhd.org/normandyinstitute.htm ) that he was not able to go on last year. The CNP want to keep him on the blood thinners until he is done with the international fights. He has to get some blood work done on Saturday. His creatinine level was a little elevated but it could have been because he could not eat or drink before the CT Scan and he might not have drank as much water as he should have after exercising in the hotel facility.

Next appointment is in April.

We are making summer plans with Joe's travel, Joe teaching again at BGSU, vacation and other fun activities for the kids.

Merry Christmas and a Joyful New Year

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