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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Clean enough

Posted on Joe's FB 11/3/11

I said it in a status update before, and I'll say it again: There's no way to adequately express the level of anxiety one has on the day of 'follow up scans.' And as I told a lot of people over the past week, these days are bound to be either the best day of your life, or the worst day of your life. You try to stay positive; you rationalize in your mind that the anxiety is needless, and that even if something is detected, there are many, many options for treatment.
And yet as that clock ticks throughout the day, through the vascular appointment, through the nutritionist meeting, through the lab work, through the hour wrapped in a blanket in the cold basement chemo room for CT prep, through the scan itself, and then especially in that little waiting room looking south of Carnegie Avenue, that anxiety builds. A resident - Dr. Haddad - comes in, and does a brief physical. Our angel, Laura, comes in and says that Dr. Rini's almost done reading the scans, and I'm sure that my heart is doing a "Loony Tunes"-like number on my shirt THUMPTHUMP... THUMPTHUMP... THUMPTHUMP...
She leaves. Dr. Rini comes in with a few pieces of paper. And what he's bringing is inconclusive. The scans show those little 'nodules' on my lungs that were noted back in June may, or may not, have grown by 1/100th of a millimeter. He says we should be 'cautious' but not necessarily concerned, and sort of as aside says, "It's my job to be cautious." And I thank God for his caution. I'm waiting for the other shoe to drop... and I ask - "Is that it?" "Yeah," he says. And I feel the weight of a thousand sleepless hours lift.
So the little nodules? They might be cancerous. They might not. They're too small to biopsy, and they've been that way for at least seven months, maybe longer.
A few months ago, I think this news might have driven me nuts. It certainly would have scared the living shit out of me a year ago! But I'm slowly coming to realize that 'inconclusive' isn't a dirty word. Indeed, inconclusive isn't so bad. My scans aren't clean, but they're clean enough. And today wasn't the best day of my life; and today sure as hell wasn't the worst day of my life. Today was a day; a day I woke up grateful to be alive, a day I got to spend with my partner and best friend, a day I was grateful for the awesome prayers, thoughts and support of my friends and family, a day I got to wake up feeling pretty good, and go to bed feeling pretty good. I like today. I have a feeling I'll like tomorrow, too.

THE DETAILS
• I may be off blood thinners by this time next week. Hello, bicycling and salads (I missed you, tabouli); goodbye injections and a bruised belly!
• I am going to be in the compression stockings a LOT longer... 18 more months. But if it means I don't have to do the injections or remember the medication, I'm down with being the freak with a weird leg.
• I learned a lot about changing my diet a little more from nutrition.
• Trial meds going well; no changes in dosage or anything like that.

Well that was fun.

Monday Joe had a scheduled ultrasound for his left leg that had the blood clot (DVT) in May. He was told to use the outpatient services in the building where he has his doctor and weekly blood work done. A clot was seen in his thigh and his doctor’s office was given the information. His doctor was out because he broke his ankle and so the CNP was taking care of things. When Joe first developed the clot in May it was seen by staff and equipment at the Cleveland Clinic. Local doctors never saw it just from reports and from Joe how extensive it was (from the groin to the calf). What was seen on Monday it was not communicated (or believed when communicated) that what was seen was most likely the old clot still there taking some time to dissolve because of the size of it to begin with. Joe was told to report to the ER for IV Heparin then transport to the Cleveland Clinic. He waited until he heard for sure from Laura (the super hero oncology nurse) because he wanted to see what the CC staff thought. He was thinking that even if there was still a clot it may be better than it had been and he had no issues. He had run a 5K 9/10 and has been running with E&J at cross country practice, and up and down the steps at Lucas Oil Stadium at the Browns game Sunday. Laura agreed (maybe not knowing what was seen or that the local doctors did not know the history of the clot). He was told to not stop at home to pack a bag. He did stop to get something to eat and enjoy since he knew it would be a while before having good food again.
So I’m making plans at work to have the kids taken care up and get my self to Cleveland. When I get out of work at 12:30 I run home to pack him a bag and make to St. Luke’s to see him before he leaves. I make it as the transfer ambulance staff wait for me. It was stressed to Joe they could not wait long for me but they were in no hurry evidently because they opted to make Rt 2 all the way. Joe said it took forever as he was checking the map on his phone. Once he did get to CC the staff there said he had been waiting for him and wondered what took so long. He got to his room but he was disappointed in how long it took to get the Heparin restarted.
Not wanting to freak out E&J by having them be picked up by someone else, I picked them up from school, picked up Mark and went home to have something normal while waiting for my Dad to get there after work (Mom was going to relive Dad and stay the night to get the kids to destations Tuesday morning). After dinner a dear friend took me back to St. Luke’s so I could get Joe’s car and drive to Cleveland. With the rain and Joe’s little car (and the news that a long time friend and teacher of Joe’s was killed that morning in a car accident) I used caution and stayed in the right lane. I did not get to the CC until 9:15. Joe said nothing has happened since he got there not even an ultrasound to see for sure. I stayed an hour just missing the first hour of free parking by 4 minutes. I went to stay with Joe’s aunt and uncle who have been so kind in letting me stay over night so many times. I never did get to see them because they were asleep when I got there and had already left early when I left there at 7 to get back to the hospital.
Back to the hospital (and the traffic on I-77 oh what fun). We waited for hospital transport for more than an hour. Joe could have walked himself (3 times for all the time waiting) there no issues but they needed him to be with transport. Their ultrasound showed that there was no longer a clot below his knee. The thigh area was “inconclusive” because the first ultrasound in May did not get a good image of that area because of the swelling in his leg. So not having a good image to look at they were not able to tell if what he had was new or old. I’m no doctor but I’m really frustrated that given how extensive the clot was in May and what it looks like now my guess is it is still just part of the old one. He has been on blood thinners since the clot in May was discovered so the chances of developing something new was slim.
So they stop his Heparin and let it wear off for a few hours before getting him started on shots of Lovenox. It is a blood thinner he has to injected himself with twice a day. In order to get a better handle the interaction of the trail meds and Coumadin they opted to stop the Coumadin (great we just had a prescription refilled) and start with the Lovenox. The blood coagulation rate, INR, was never right where they wanted it because the interaction with the trail med made the Coumadin not as effective. When he was taken off the trial meds (twice now) his INR gets too high and he has a greater chance of bleeding. The trail meds and Lovenox don’t cause problems together but the Lovenox does tax his kidney some. We can never win.

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Well it has taken me almost a week to get this written. The latest is that Joe is just tired from the trial meds. He did coach at the Cross Country meet on Saturday and walk/run the Northwest Ohio Race for the Cure on Sunday. If the children/dog would let him get a good night of sleep then he would not be so tired.
We go back to Cleveland for a regular check up Oct 6.

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!