Columbus and the Valley

Fidgety and Itchy Are Not Good Playmates

This is the time where it would be advisable for someone to lock me in a closet for a couple of days. Lock me up and render me unable to type, so I won’t say something stupid and burn a very important medical bridge. Here I sit, feeling like I’ve been dipped in hot french fry grease, itching from the top of my head to the soles of my feet. Looking around and nobody’s come to lock me up, so I’ll continue.

<Pause>, while I argue with myself.

Should I say it?

Maybe I shouldn’t.

Hell, I know I shouldn’t.

I’m trying so hard to keep this disease from making me irreparably angry. Irreparably, as in I can’t recover from it and return to being a non-angry person. A little anger is a good thing. But, if I can’t recover from it, I’ll become Jack Basset, and I damn sure don’t want that (even though I love Jack Basset and he’s never been angry with me…until now).

I have now been officially told that I’m not going to be given another dose of HD-IL2 at Duke. That my creatinine soared too high during the therapy and that it didn’t rebound back to baseline quickly enough after the last dose was given. I’ll reserve comment on that for now (an uncharacteristic show of discretion).

Here’s what I have asked Dr. George:

• What are your plans for scans to determine whether HD-IL2 round one, part A’s 9 doses have benefitted me?

• If those scans show efficacy, what will we do next?

• If those scans show disease progression or disease stability, what will we do next?

• What about the tumors in my left adrenal and right kidney? Is there a surgical option to remove them and under what conditions?

These are the questions I’ve posed in an email to Dr. George this afternoon and I’m waiting for his reply.

I’m particularly agitated right now because I’m so itchy, but I also feel untethered. Dr. Pippas has spoiled me. When I was (and, technically, I still am) under his care, he made me feel like I was the only patient he had. This is a gift that man has that is more valuable that gold. I felt connected to him. He had my back. He always knew where we were and knew what to do next if something went awry, and he communicated that to me when we talked. And, we talked often.

Right now, I feel like I’ve been thrown out of the community pool and I’ve got a hankering to swim, but I’ve got no place to do it. I have active tumors in my body and with the news I got this afternoon, there isn’t a plan in place to deal with them. Dr. George may well have a plan, but as I sit here right now, I don’t know what that plan might be. I don’t like feeling this way.

I know I’ll hear from him, even though it wasn’t on Tuesday as I was promised. What I have to realize is that the Duke operation is a large, regional cancer center, not a community cancer center. That comes with all sorts of volume demands on the gifted doctors who practice there. I marvel at how much these doctors have to do to manage their case loads and still have time for research. I know all of that. But, I am fidgety as hell when I want information and it comes more slowly that I want it to. Right now, I am just fidgety. And itchy. These things don’t play well together.

I either need a tall glass of Woodford Reserve bourbon…..

JUST HEARD FROM DR. GEORGE: We have set up a phone call for tomorrow afternoon. He’s got some time when he’ll be traveling (not driving) in a car that we can talk. I expect much will be accomplished with this call and that I’ll have some direction about next steps.

or a massage, or some sleep, or to be dipped in a large vat of motor oil, laced with coconut butter or all of the above. I probably should just throw this post out and start over, but that would be dishonest. I intend to chronicle my life with this cancer, the good parts and the bad parts. This is one of those not so good days and I feel like I should talk about it.

I am looking forward to my talk with Dr. George tomorrow. Maybe the pathway will become clear again. I need for that to happen.

 

Thank You, Carlton Motorcars, Inc.

Wednesday of last week was the day we got to go back home from our tiring initial appointments and diagnostic testing at the Duke Clinic in Durham, NC. The plan was to go up there and meet with Dr. Dan George and Dr. Mike Morse to be evaluated for HD-IL2 therapy. We were able to do what we went there to do and was pronounced healthy enough to be able to survive the therapy.

Needle sticks, a stress echo test and some high-anxiety meetings with the doctors made for a couple of tired travelers. We pulled out on Wednesday morning, excited about getting back home to our own bed and to our family and friends. We fired up the car and put it into the wind, thinking we might be heading into some possible rain that hurricane Isaac might be slinging around. The rain didn’t materialize, but something worse sure did.

Jill and I are not into chain restaurants when we’re in a new place. She did some research on the Yelp app on her iPhone and we picked The Bohemian Cafe in Greenville, SC, which is almost exactly half way home. We got to the restaurant at about 2 p.m. for a late lunch. After a great lunch, we shopped for a few minutes in a vintage vinyl record store which is conveniently accessed through the restaurant.

All that was left for us to do before we got back on the road for the last half of the trip was to gas up. Like I said in my last post, just as we were turning into the gas station, a couple of jolts that felt like the transmission was coming apart set me on edge. By then it was about 3 p.m. and I made a phone call to Carlton Motorcars, Inc., Greenville’s Mercedes dealership, which was thankfully only 2.8 miles up Laurens Road from the gas station.

I got David Knutti on the phone in the dealership’s service department. He very professionally gave me a couple of things that I could try that might reset the vehicle’s electrical system and make the problem go away, if it was only an issue that a reset could fix. I told him that we would try those, but that if that failed, we’d be up there to see him.

Sure enough, the quick fixes didn’t work, so we limped up the road, bumping and grinding all the way. Normally my trusty, 8-year-old Mercedes E500 is still so exciting to drive. She is heavy and solid, but is so nimble to the touch. She begs for speed and the faster you go, the more she seems to like it. But, whatever was ailing her made her listless and flat. I was sad about it in a way.

So we rolled into Carlton Motorcars service area, which is in a separate building from the sales end of things. I got out of the car and asked for David. A smart, thin, glasses-wearing man put out his hand to shake and I could see the “it is 3:25 on Wednesday before a holiday weekend and we’ve been slammed” look in his face. I mean, how could he help that? It was true! I filled out some paperwork and he palmed my smartkey and headed over to the car to get what he needed there.

As he got out of the car and turned back my way, the magic started to happen. He had the look of a man who wanted to do something nice for two tired travelers. He escorted us to the nicely appointed, very clean waiting area and offered us snacks and drinks. I eyed the big, stainless steel, high-tech looking coffee machine and walked over to check it out. There were two bean hoppers on top that would, on command, grind either caffeine-free or regular coffee beans. Then, you could select how large a cup you wanted. This is a perfect coffee situation. Since I like my coffee bold, I chose the smaller cup option and hit the button. Less than a minute later, I had a perfect cup of hot coffee. That is a cool machine (I use the word “cool” with permission from Jimmy Elder).

Twenty minutes later, David came back into the waiting area and told us two good things. We found out what was wrong with the car and that they had the part that could provide a fix. Not only did they get us out of there in less than a total of two hours, I got two phone calls on Friday to follow up on their work. One of the calls was from David Knutti. I told good friend, Bill Becker, about the experience that we had a Carlton Motorcars and he did such a Bill Becker kind of thing: He wrote an email to David Knutti and told him that he had served his good friends in a great time of need and the he appreciated how well we were treated.

Usually, when something great like this happens you tell a few friends. I decided to tell a few thousand friends via this blog post, on Facebook and Twitter. That is the kind of customer service that is so hard to find in this online internet world. David, I got the owner’s name from you in order to write her a letter. I decided to handle this in a different way. Please share this blog post with Heather Carlton and tell her you could use a raise in pay. You are a great ambassador for her business.

I’m packing right after I finish this blog post. We’ll be pulling out in the morning for another 8-hour drive to Durham. Some time on Monday afternoon, they’ll insert the picc line in which the drug aldesleukin will be dripped into my heart. Later, at 6 p.m., they’ll turn the switch for the 15-minute infusion of the drug that will likely turn me every which way but loose. Then, every 8 hours they’ll drip in some more until I physically can’t take it anymore. The goal is to take 14 doses, but with my diminished kidney function, it is fairly unlikely that I’ll make that number.

We’ll be in a step-down unit that functions like an intensive care room in terms of the ultra-high level of scrutiny I’ll have. Jill will be allowed to stay with me and unless the rapture happens, she’ll be constantly by my side. One of my best high school friends, Richard Barrett, has told me that he wants to come up to Duke from his home in Greenville and tag out with Jill to give her some respite. You might recall that he did this for us after my drug addled first radiation treatment at Emory back in December of 2010. I still don’t know what I said to him that afternoon.

Needless to say, I wouldn’t just let anyone see me in the sad shape that I’ll be in next week. But I’ve already babbled incoherently to Richard once, so we’ll appreciate his visit one day next week to give Jill a break (if she’ll take it). By the way, other than Richard, I do not want or expect any visitors while we’re going through this treatment. Even though I’m not a particularly vain guy, I will be at my lifelong worst next week, and I really don’t want to be seen as the amorphous, slobbering blob that I’ll likely be.

I just got a call from Sea-Daddy Neal Pope. A sea-daddy is an affectionate term for an older Marine that takes a younger man under his wing to show him the ropes. Despite the glorious performances Neal has delivered in a courtroom, he also knows medical adversity the likes of which are not known by many. Here’s what he told me: “Son, the stadium is full and they just handed you the football. It is all on you now.” Tomorrow, we go. Monday evening is when I and the drugs will be darting through the defending roadblocks caused by the cancer cells that want to bring me down. Your prayers are appreciated as we begin this difficult journey.

I also want to send out a tribute to an old friend, Terry Thomas, who is facing difficult days with melanoma. He has been a warrior for our country and he is facing an enemy he can’t see right now. Please join me and pray for him, too, as well as all the others who are living with cancer.