Columbus and the Valley

Pin Cushion – Part B

With the agony of itching a mere distant memory (I lied, despite all the terrific home remedies — and I diligently tried them all — the itching is not only a distant memory, but is so close I can still scratch it!) we’re steeling up to be the “B” side of a human pin cushion at Duke University Hospital’s high-dose interleukin 2 program. We’ll be leaving again on Sunday morning, if my lab report is clean enough for me to be readmitted for treatment. It was late going up to Dr. Morse’s office and I haven’t been able to confirm with him my creatinine level and whether or not we’re a go for this Monday or the following Monday.

I was able to drop by the office for a few minutes today after I went in for lab work at JBACC. Man, it was good to see my office mates and we got the great pleasure to see former tenants of ours, College Resources Center’s dynamic trio Genie Mize, Hope Phillips and Jean Flowers, who stopped by to bring us a bodacious bag o’ goodies for the trip. I love those three women and we miss them so much. It was serendipitous that we got to meet Genie and get back together with Hope and Jean for the too-short time we had while they were in our building. It felt good to have my whole harem back together again. It is hard to get in a word as the only “male member” of the group. Our building at 10th and 3rd has been affectionately been called One Penis Place (OPP) over the years. Now with videographer, Danny Beard, on hand, my gender numbers have grown by 100%.

An update: the gout is on the way out, I’ve almost completely peeled off the entire top layer of my skin, I’ve pretty much lost the water weight I packed on last week during treatment, Andy Pippas and his entire staff are still THE BOMB, the John B. Amos Cancer Center is an absolute healthcare jewel, we appreciate the readers of this blog and we’re ready for the second part of round number one. I’ve got a giant bag of my dad’s peanut brittle, which we’ll be using to try to bribe our way into one of the larger corner rooms at Duke on the 9100 floor.

We’ll blog from NC to keep everyone up-to-date with our efforts to get this cancer gone.

 

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.

Good Report Today

I am so sorry that this post is coming so late. I only slept for about 3 hours last night and when we hit our hotel room after our appointment, I took a much needed 2.5 hour nap. I got up just in time to meet two of our sons and Michael’s girlfriend for dinner. We just got back to the hotel room and so I’ve settled in to write.

Dr. Stapleford came into the treatment room today after viewing the MRI scan results and said,  “Nothing has changed.” I looked at her and while I was staring I was thinking, “I came into this place with cancer in my spine and you’re telling me nothing has changed!” I wasn’t liking the way this was going. And my dad sent us up to Atlanta with some of his semi-world-famous peanut brittle for the doctor, too. Unless something changes pretty quickly, this peanut brittle is going back home with us.

So the questions started flying. What do you mean nothing has changed. Is that good? “Oh yeah, that’s good,” she said. Turns out what the good doctor was saying is that the hole that was left in my spine at L-2 is still there and it is still the same size. Although they can’t reach in there and look for individual cancer cells, if the radiation did its job, there should be nothing but dead tissue inside the hole in my spine. “Nothing’s changed” is good. Chances are good that the high dose of radiation killed the tumor, because if it wasn’t dead, it would likely have grown over the past few weeks since the treatment.

She poked and prodded. She asked more questions and determined that we should follow up with Dr. Pippas, Dr. Gorum and do another MRI without contrast in 3 months, which we’ll have done at The Medical Center. She is quite thorough and at the end of our appointment, I whipped out the peanut brittle and handed it over. She is quite thin, so this should be good for her.

So, the news is good and we’ll be meeting with Dr. Pippas this coming Monday, January 10 to discuss next courses of action. We’ll probably start an infusion of a drug called Zometa, which should help strengthen my bones against another metastasis. That is one of the things on our list to talk to Dr. Pippas about.

We’re both pretty tired and we’ll head back to Columbus tomorrow afternoon after a seminar we’ll attend in the morning up here. Once again, thank you all for your good birthday wishes and your concerns about my health and the welfare of our family. Also, please say a prayer for our friend Fred Morgan, who is having renal cell carcinoma surgery tomorrow morning at M.D. Anderson in Houston. He is really on my mind right now.

Please forgive me for the late post and thanks for following my blog.