Friday 8/3

One can be told all the side effects but until it happens it is not know for sure.

Now we know for sure. 

Joe's BP has been all over the place not crazy high like 140 but going from 88 to 114 until the Dopamine is controlled. 

He is so beat. So tired and fatigued.

Think parent with a newborn, while being hung over with the flu then add in a marathon and you might be close.

We have been told to not count the doses but we do of course.

For the record here is what has taken place:

Monday 4pm, Mon/Tues midnight, Tues 8am, Tues/Wed midnight, Wed 8am, Wed/Thurs midnight, Thrsday 8am, Thurs/Fri midnight.

When a dose has been held it has been because of BP.

We don't know if today's 4pm will be held (but BP has been good). We don't know if he will be discharged today but his nurse says even those who get the 4pm dose some are still discharged that day.

I'm making tentative plans for us to stay at a hotel in Ann Arbor tonight so he can get some good sleep before going back home.

He is very very tired which is hard to beat when vitals are checked every 15 minutes when trying to regulate his BP but not much better when woken every hour for normal vital checks.

He is getting Tylenol around the clock as well as anti nauseous meds (maybe more than one kind), mouth rinse (mouth sores are common on this drug so they try to keep ahead of it with sodium chloride mouth rinse every two hours), and something for sleep/anxiety.

He has not showered or changed clothes since Tuesday but he has thought about it a few times just not the energy to do it.

He is still getting the Lovenox for the blood clot (at a higher dose than usually which I don't fully understand) and IV lines are flushed with Heprin at least once a day. He is due to have lines changed today if he is not discharged.

He misses the kids and has had moments when he just wants to go home. 

The staff is wonderful and I'm understand how to get around better.

They do have yummy chocolate chip cookies but not as good as the Cleveland Clinic.

Thank you all for your thoughts and prayers.

Wednesday morning

Joe was not given the 4pm does Tuesday afternoon because his HP was too low. He felt better and had something to eat and was able to watch some movies he had loaded on his phone. When I left after 8:30 he said he was going to get some sleep after using the bathroom but he posted pictures of him walking the halls.

He did have the midnight and the 8am dose as his BP has been great.The nausea is fierce! They have given him something for sleep and nausea. I'm in BG today (arrived late last night) and will be back to his room Thursday morning.

We have been told no one gets all the doses. Most get 8-10 of the 14. It is not as if he has to make of the doses- it is just skipped.

Thank you all for the prayers and support.

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.