Three doses in

Joe's Mom is with him today and I got a report from her. Joe's BP is holding good but the nausea is more difficult this time. He has received all the doses schedule to this point (Monday 4pm, midnight, Tuesday 8am).

Yesterday we had Ellie with us since I would be going back the same day and it was an asy first dose for Joe. We left about 8am and Ellie and I were back about 9:30pm. I think letting Ellie see that is involved a lot of sitting around and waiting made her see that it is not all she made it out to be in her head (she is my daughter after all). She did enjoy eating out if you call cafeteria dining eating out. Her and I sat in the waiting room planing Scrabble on her iPod while Joe had the central line put in again and then Joe and her played once we got Joe set in his room. She enjoyed taking control of the tv in the prep area and again in his room after lunch. Joe also had her as his walking companion as he walked the floor exploring (different wing than last time because they were remodeling).


She did not have any issues about the medical stuff. She did cry a little leaving Joe and on the drive home but more so because she will miss him. No different than other times he has been away for health reasons of travel adventures. I'll be in BG tonight to get Rick settled with the kids and leave early Wednesday morning to be with Joe until Saturday. Thanks again for all the prayers and support.

Rebound

Joe had a check up yesterday. It was simple compared to everything else- just blood work and physical exam.
Happy to report all looks good. His kidney function rebounded nicely.

Outside of health dealings...
We have had fun evenings with much laughter with the kids this week. Many belly laughs. We all had a good cry Sunday when Joey found Mr. Freckles had died. Joey won him at the Fulton County Fair last September. We gave him a proper burial and grave marker in the yard. Joey's sorrow was short lived because Monday night he won a new fish at the Wood County Fair.
We are (well at least I am) getting everything together for school starting in a few weeks.
My schedule BGSU starts 8/20, Ellie & Joey start back Wednesday 8/22, Mark starts preschool 8/27 and Joe starts 8/28 but does not expect to be there the first week for his high school classes or his BGSU class he is teaching on Tuesday nights.
I had taken Ellie's uniform pants to hem last week when sitting with Joe in the hospital but I was not into it. At the rate she is growing I should wait anyway because it will be a month before it will be cold enough for pants.
Being that I'm a planner and organizer, working out logistics for next week gives me a little joy. I just hope my brother can handle the kids.

Thank you all for the prayers, meals, gift cards, cards and anonymous donations. We are very blessed to have great people in our lives.

I had tried to post photos last week and it did not work so here is my second attempt.

Don't worry this was a staged picture.

In Joe's words

Post by Joe on FB 8/6/12

They told me what I should expect from Interleukin Two in the appointments before I started treatment. In fact, it was pretty much a day-by-day itinerary of what side effects I should expect at what point. At some level, I understood all of this. Words like 'nausea' and 'hallucination' are words I believed I understood, and frankly, at certain points of my undergraduate experience, they were just part and parcel of a weekend poorly spent.

At a deeper level, though, I think I really thought I was going to avoid all of it. After all, I had a Captain America shield. But what happened over the past week was beyond unpleasant. And now that I know that the doctors really weren't kidding, and that Super Soldier Serum has not rendered me immune to the side effects, I can say that for the first time in our year and a half of fighting renal cell carcinoma, that I felt like a cancer patient for the first time. 

We reported up to UM Medical Center on Monday to begin the treatment, and just as the doctors said, that first day wasn't bad at all. I walked a mile and three quarters in the loop around the eighth floor, read a book, watched some movies on my phone. It was like vacation, except with a central line inserted in my neck. The next day wasn't so bad, either! I finished up my last bit of grading for the BGSU class I was teaching, read a little more, walked a little less, and that night, developed one hell of a headache. That was the pebble at the beginning of the avalanche.

Wednesday was kind of bad. I only got out of bed a couple times, and I felt this lingering stomach churn. It's not like the nausea I was used to. That generally came and went in a few hours, culminating in a nice, satisfying vomitthon, some cold sweats, and waking up the next morning feeling OK. This stuff just hung around, all through Wednesday and Thursday. Twice, it got me to the point where I was sure I was going to hurl, but it never really came to fruition. I didn't get out of bed at all Thursday, and they started mainlining more and more drugs down the hatch; drugs to deal with long term nausea, drugs to deal with short-term nausea, drugs to deal with the headache, drugs for this, drugs for that, and then, the drugs to build up my BP, which had crashed to 75/40-something because of all the drugs. The fun part about that drug was that now I had to get disturbed every 15 minutes for vitals.

Thursday night into Friday was the worst - just like they said it would be. I can't really explain this, but those last two days I was utterly, completely exhausted... and yet completely unable to go to sleep. When I did get sleep, it was accompanied by the most vivid, detailed, complex dreams this side of "Inception." And while I'm on this topic: Why is it that these dreams included friends in trouble, finding corpses, and massive vehicle crashes? If I must have detailed dreams, can they PLEASE include any combination of large yachts, prime rib, Bermudan beaches, my family, and/or Princess Leia?

They discontinued treatment after the early Friday one because of the BP crash, and my general physical and psychological state, which was somewhere in the Crispin Glover neighborhood. They held me the rest of the day, and into Saturday, until they were sure I was stable, and then sent me home with 20 puffy new pounds of water weight since my lonely little kidney basically shut down after Wednesday.

We came home by way of the Sisters of Notre Dame mother house, where sister-in-law Maggie Hagan was having her baby shower, and I got to see my sibs-in-law and Ellie for the first time in a week. From there, we went home and I got BIG hugs from Jophus and Mark, who then headed north with Papa so Katie and I could have a quiet house to recuperate in. Saturday night was pretty rough - I had some fluid in the lungs - and Sunday I called Dr. R, who got me a diuretic that cleared up the lungs. I pretty much spent all of Sunday on the couch with my dad watching the Olympics and trying to keep the headache down. Last night, though, was kind of a turning point in a number of ways, the most important of which was that I was able to find a spiritual centering again. The whole time at UM, I prayed - but it was the prayer of a person who is simply saying words while struggling through the experience. I couldn't find peace except in small, small moments. Last night, I was able to actually have that peace and quiet for a sustained period to make a real connection. 

Today was the first morning in almost a week that I woke up feeling mostly human. I got about six hours of sleep, which is two less than I generally need, but four more than I'd been getting in a single throw for quite a while. Grandma and Dad Slaw came over to hang out with me and experience the spectacle of the tree cutting in the backyard.

Watching that tree come down today was really hard. It's hard not to find symbolism in nearly everything when you're in the middle of something like this. Between Joey's fish dying last night, and the tree going this morning, I felt a profound sense of mortality. But as Grandma and I watched Jeff Mantel and his crew expertly take that tree apart - and as we saw how rotted it was, and what a danger it possessed, my frame of mind shifted. The tree - as beautiful as it was, as much it killed me to see it go - was a danger to our home and our safety. It was painful, and it's going to take adjustment, but we're better off having been through it. I'm choosing that metaphor as we look at going back to UM next week. Words cannot express my anxiety for going back - they have already told me that week two will be much worse than week one. And week one was pretty much one of the worst weeks of my 37 years on this Earth. I took another sign this morning, too, and that was the successful landing of the Mars rover. Everything had to go right at a million different points - and it did. And it can for any of us.

I sure do appreciate all of your thoughts and prayers throughout all of this. I apologize to anyone whom I haven't called or texted or emailed back to since Tuesday. Those who know me know that I'm a talker - but I just haven't been able to even talk much until yesterday and today, and this is the first time I've gone down the stairs to use a proper keyboard.

Love  to all - and stay in touch!

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.