Columbus and the Valley

Shaking Like Elvis

I have spent untold hours over the past 3.5 years in the infusion suite at the John B. Amos Cancer Center. While all the rest of the crowd has had destruction cloaked in sheep’s clothing dripping into their veins, I was always the pussy over in the corner with water coming down my drip line. I watched them wretch, release their bowels and sometimes be knocked flat by those cancer poisons releasing one drop at a time into their various ports, PICCs and IVs. You see, chemotherapy doesn’t work for renal cell carcinoma. I always felt like some kind of fake when I was in there being hydrated. That was an important procedure for me, but in the overall scheme of things, I felt like a bit fat pussy.

About 11 p.m. last night, I put on my big boy pants and joined the real infusion crowd. The first bag of aldesleukin (HD-IL2) was started about 6:30 yesterday evening. At exactly 11 p.m. Last night I jerked myself from a deep, REM sleep. My muscles were firing from my jawbone all the way through to the bottom of my feet. The rigors (for some reason here, pronounced Ryegers) hit me with a vengeance. I looked like a 240-pound marionette being controlled by one of Jerry’s kids. I couldn’t stop shaking until one of these nurse angels came in the door with a syringe filled with 2 mg of morphine. Two of those later, the shakes were gone and I drifted off to a great sleep in spite of the regular vital signs checks, but not before I was stricken with a bout of bodacious nausea. They came and dealt with that, too, and I managed to go to sleep without soiling myself or throwing up.  Mike 1 — HD-IL2 0!

They’re about to come and hang dose number three. They tell me these symptoms are cumulative and that I’ll be getting sicker and maybe quickly. My blood pressure is now about 95 over 50, so it has exhibited its expected slide. We’re going to get me into the shower as soon as Jill comes back from breakfast and get the wound changed where my PICC line went in.

I woke up this morning feeling really well. Wide awake, talkative and happy to be in the care of the beautiful Janet from Baltimore. These nurses here are truly incredible, just like the nurses in other institutions where I’ve had care. They are the ones on the line putting up with the patients and the doctors. A reluctant nurse sandwich. I have brought a load of my dad’s semi-world famous peanut brittle. That planned bag of sweet currency is helping to pay the bills around here.

So, with the third of dose of up to 14 in sight, we’re soldering on, one drip at a time. By the way, I found out the real reason to use a PICC line instead of a normal IV. Last night, I posted that the PICC goes in the antecubital (in the crook of your elbow) vein. It doesn’t. Mine went into the Basilic vein. Even though the wire tried to make an unscheduled side trip up my jugular vein into my neck, the nurse fished it back and had me contort my neck to force it over toward my heart at the superior vena cava. The reason a PICC line is used it to get the end of that catheter in the center of one of the largest veins in the body, the superior vena cava. That is done to properly dilute the medications in that big pipeline to better disperse them throughout the body.

I try to always learn something new each day. That is easy to do in a hospital.

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.

Belgian Bike Race

At the moment that Dr. Andrew Pippas, morphed from being my friend to becoming my medical oncologist, I already knew several things about him. I first met him in his cramped little office across the street from Doctors Hospital, well in advance of the construction of the John B. Amos Cancer Center.

I was there to welcome him to town. Our conversation drifted to men’s clothing. I recommended Chancellor’s as a good place to go. We talked about his family and that he had just arrived here from Lakeland, Fla. I found him to be quick-witted, very intelligent and he seemed to always order his thoughts before he opened his mouth to speak. Over the years I’ve know him, he’d occasionally disappear from the small space his body occupies and appears to be lost in thought, pondering some angle, some formula or another way to get at something on which he’s been working. Like a well-dressed mad scientist in a bow tie, he leaves no stone unturned in his quest to heal those of us sick people who are glad to be in his care.

These few days since my last posting on this blog have found me on a soul-wrenching journey. Our lives have gone on: doctor visits, dinners with family and friends, quiet conversations with family, the business of running two print magazines while launching three digital versions of both of them, church (although I skipped today to have some quiet time just for myself), board work, tractor time, an event with my parents — all against the ever present backdrop of cancer and a big decision that needs to be made.

As you know, Jill and I just returned from an 11-day journey out to Houston, Tex. to the M. D. Anderson Cancer Center. Out there we found out a couple of things we already knew and one thing we were surprised to hear. The cancer that has invaded my body is trying to kill me, but thankfully it has brought a slingshot to the gun fight. But instead of the one tumor that we knew I had on my left adrenal gland, we found out that I have two more small ones in the upper pole of Strainer, my right and only kidney.

There is a surgical option that should be exercised after a period of systemic treatment. I have always been told by Dr. Pippas and other medical oncologists whose opinions we’ve sought: “Treat a local problem with a local treatment. Treat a systemic problem with systemic therapy.” We’ve got a systemic situation now, and although surgery is still on the table, we need to blast my system with cancer-killing therapy to beat down what is there and destroy any cells that may be trying to get a toe hold someplace else.

TKIs and anti-angoiogenic drugs are the chosen systemic route these days for clear cell kidney cancer because they can shrink tumors and lessen a patient’s tumor burden in advance of surgery. I believe there are 7 of them: sunitinib (Sutent), pazopanib (Votrient), everolimus (Affinitor), axitinib (Inlyta), sorafinib (Nexavar), temsirolimus (Torisel) and bevasizumab (Avastin). These drugs have two things in common: their toxicities are legendary and they cannot cure kidney cancer. The 8th approved therapy is called Aldesleukin (IL-2). It has one thing in common with the other seven: its toxicities are legendary. AND, +/- 7% to 10% of the time, it can also cure (provide a durable, lasting remission from) kidney cancer.

If you search HDIL-2 on this blog, I’m sure you’ll find a double handful of references and the discussion that if this cancer forces me to a systemic therapy, high-dose interleukin-2 will be the one I choose. I know that I’ll be walking unarmed and naked into a wall of flames, but I’ll be walking toward the only thing that can give me my life back and provide a tiny hope for my greatest wishes: to live to be old with Jill Tigner, to see our sons happily married and to hold a lapful of grandchildren.

Andy Pippas called me this afternoon and we talked about things. The bottom line: I am not going to dick around with a drug that has not got a chance to cure me. Not now, anyway. I may have to take one of these 7 drugs some day in advance of another surgery. But, I may be one of the 7 percenters, who can get enough remaining life out of HDIL-2 to ether be done with this shit or to live long enough for something more profound to come along.

So, I sent Dr. Dan George an email today and asked him to make a place for us at Duke University Hospital in his world-class HDIL-2 treatment program. My hair is on fire, my eyes are red, I’m locked and loaded and I’m going in. Unless something in my scans or labs makes me ineligible for this treatment, we’re choosing to ride the only horse that can take us all the way to the finish line.

This decision had been difficult to make and has taken days of discussion with Jill and many emails with the doctors who are involved with my case. I am tired of thinking about it now. We know what we’re going to do and we’re ready to get about it. Here is some information on Aldesleukin if you need some specific things to pray for on our behalf. This is going to be worse than 100 miles of cobblestones in a Belgian bike race. But, with enough people cheering us on, we’ll get through it.

I’ll post here when I hear from Dr. George. Please keep us in your prayers.