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Still On Hold

I just got home this afternoon from spending the early part of the weekend with my brother, Eric, at his hunting lease south of Albany, Ga. I went by The Medical Center lab on Thursday morning to get my blood work done and then headed out of town to see Eric. On the way down there I got a call from Dr. Michael Morse’s physician’s assistent, Cindy Simonson. She said, “Mike, your creatinine is still at 2.3. Dr. Morse is saying no to any further HD-IL2 therapy. So, you’re on hold for coming back on Sunday and I’ll let you know what comes next.”

So, I decided to go see my brother and do what we do best….laugh. I have laughed my guts out all weekend long and I haven’t given cancer a single thought. So, we’re not going to Duke tomorrow and I don’t have a single idea what is going to happen next. I’m sure we’ll be bringing in a nephrologist for consultation. And, I’m sure I’ll be talking to Dr. Pippas, Dr. George and Dr. Morse about next options. I guess they’ll scan me anyway to see if the first half of the HD-IL2 therapy, though abbreviated, did me any good.

I really hope the creatinine is going to settle back down. If it doesn’t, we’ve really got some tough ground ahead. Not being able to use contract media for scans might just be the most scary change we’ll have to make. If I can’t stand the contrast, all of my future scans won’t be worth much. They’ll be trying to manage a scary disease with blinders on. I don’t know the answers to any of these questions at this point. I’m just speculating and I won’t know the score until we have some of these medical consultations.

Sorry for the short post. I wanted to bring everyone up to speed and I want to go talk to my wife. I’ve missed her.

September 22, 2012 | Tagged With: Albany GA, Cindy Simonson, creatinine, Dr. Andrew Pippas, Dr. Dan George, Dr. MIchael Morse, Eric Venable, HD IL2, Jill Tigner, The Medical Center| Filed Under: Uncategorized | 18 Comments

If Your Central Gateway Ain’t Happy, Ain’t Nobody Happy

We had a very, very long day yesterday on the return trip from Duke. We stopped in Greenville for lunch, which is almost exactly half way home. We were at a great little restaurant called The Bohemian Cafe. Really terrific sandwiches and an attached old-time record shop with thousands of vinyl albums and a smattering of CDs, too. After lunch we stopped at a gas station right across the street to fill up and that is where things went south.

As we pulled into the filling station, I felt a very noticeable bump and it seemed that my entire car just went flat. Gone was the leopard-like, perfectly-tuned, solid stance that makes our 2004 Mercedes E500 so much fun to drive. Instead, she felt listless and unstable, much like the busted up old man who was driving her. Sometimes these cars have a mind of their own, so we filled up the tank and restarted, hoping things would be back to normal for the remainder of the trip. Didn’t happen.

I pulled out my iPhone and used my favorite app, Poynt. We called a local Mercedes dealership and got David Knutti, the service manager on the phone. He suggested a couple of things that we might try to reset the car and those didn’t work. Thankfully, the dealership was only three miles up the road we were on, so we limped to the dealership and winced at each change of gears (up and down) when the car bumped like it was about to come apart.

I got out of the car first, and like my car, I limped over to the desk to greet David. I filled out some paperwork and David went over with my smart key to gather some information. Jill told me later that when he got into the car with her, she pulled the cancer card to try to garner some extra punch for our appeal to get back onto the road. It worked, because in a few minutes, David popped back into the waiting room and informed us that our central gateway was busted, that they had one in stock and for less than $500, including parts and labor, they could install it and get us back on the interstate. That was good news (except for the $500 part).

He told us that the central gateway is about a 4″ square box that handles the plethora of electrical communications between the brakes, engine, transmission, traction system and suspension. So, when it went out, the entire car felt listless and disconnected. My car has 175,000 miles on it. Technically, she is well-cared-for teenager in terms of how long these cars can run, but with us being on the road so much, I want her to run right every time we crank her up. If this breakdown had happened out in the middle of nowhere, we would have been alright, but the day would even have been longer. Thanks to David, we were in and out of the dealership in under two hours.

The other piece of good news, is that while we were waiting, we got a call from someone I’m going to get to know very well over the next few months. Cindy Simonson, Dr. Michael Morse’s nurse practitioner in the HD-IL2 program, called and told us that they had made room for us to begin the therapy on Labor Day, instead of the following day. So, we’ll be leaving again on Sunday for the 1,150-mile roundtrip to Duke University Hospital to begin the ugly next chapter of this cancer journey.

The Monday start will likely have us coming back home next Saturday to begin the recovery process in advance of the return on Monday, September 17 for the B part of round one. This weekend, we’ll be gathering newly purchased extra-fat clothes to accomodate my dramatic first-round weight gain. I’m expected to gain 20-40 pounds of water weight during that first week of therapy. The weight will drop off pretty quickly, but I’ve got to take some big boy clothes to travel home in. The other things we’ll be taking are lotions, movies and TV shows on DVDs, a few pictures of our family to inspire me and a load of my dad’s semi-world-famous peanut brittle to share with our Duke family of  healthcare professionals. I had actually already built of a stash of brittle in my office to take with us. I heard on Facebook that our office peanut brittle thief, Marquette McKnight, has very slightly diminished that stash in an afternoon sugar fix fit.

We appreciate all the notes of encouragement! Jill and I read the posts together at night as we put on our armor for the next day of battle. Going into this next phase of treatment girded by all the support from our friends and family is exactly what we need.

August 30, 2012 | Tagged With: central gateway, Cindy Simonson, David Knotti, Dr. MIchael Morse, Duke University Hospital, facebook, Greenville SC, HD IL2, Jill Tigner, John Venable, Marquette McKnight, Mercedes E500, peanut brittle, Poynt, The Bohemian Cafe| Filed Under: kidney cancer | 13 Comments

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