Columbus and the Valley

Whole Body Sunburn

The sixth dose of H-IL2 was hung on my pole and connected to my PICC line at 10 a.m. this morning. We slept until 9:45 this morning, if you can believe that in a hospital! Jill went out and bought the Mercedes Benz of fans. She got a table top model of the Vornado fan. They’re make in Kansas and I has been my experience that Kansas people know a thing or two about wind. So, we had a relatively cool room and I’m starting to get pretty tired from the infusions of HD-IL2. Sleep was really good last night — so good that we didn’t get up until 9:45am. Thank goodness that the nursing staff pushed the things that could be pushed and they were kind to give us some space.

The dose that I’ll get in just over an hour is number seven and we’ll be at the halfway point. I’ve developed some diarrhea. The most bothersome symptom is that I have developed a whole body sunburn. My entire body is bright red and it itches like a sunburn. My medical team says I’ll likely peel from top to bottom. That’ll be a treat, I’m sure. I’m also running a light-grade fever. It feels like there’s a war going on inside of me. I hope the good guys have got the bad guys on the run.

Because of the itching, I was given a dose of atarax. This medication made me pretty sleepy and I have slept a lot of the day today. As a result I haven’t been drinking as much water as I should, so my urine production level has dropped and it has taken on a whole new color, a little like the drippings left over from my last pot roast. Jill has been pumping water into me over the past couple of hours. We should get that problem rectified shortly. With the exception of that one bout of nausea and rigors, and up until right now, this treatment therapy has been fairly uneventful and easy to take.

With obvious flu symptoms coming on, I think tomorrow may be another day. This will be time time that I’ll be gutting it out like those windsprints our coaches used to make us run. When we used to be sure that just one more would make us pass out, throw up or both. Yet, for some reason, we just kept running. Now, like then, I will keep running. In spite of the pain and suffering, I will not stop until my body says, “damn, boy, you need to quit this!” I’ll let you know when that times comes.

Dose Four is In

I write tonight with the bag containing dose number four dripping away above my head and into the PICC line. In spite of the brief bout of nausea and the shake, rattle and roll bit last night, today I have felt great. Although I haven’t looked in the mirror to check it out, I have been told that my skin is quite red, from my scalp to my feet. My face does feel a bit like I’ve spent too long in the sun.

As of this morning, I haven’t gained an ounce. I’ve been told that I’ll likely gain 5% of my rather ample body weight during this first half of round number one. I asked the nurse who just came into my room how I was doing compared to others who have come through Duke’s HD-IL2 program. “You’re doing great,” she said, but I could tell she had that “I-tell-everybody-the-same-answer-to-that-question” look on her face.

One of the attending physicians came in today and somehow (you guess how) we got to talking about whitewater rafting. He lit up! He’s an enthusiast who has several runs of the New and Gauley rivers under his belt. I whipped out my iPad and showed him just enough video for him to know that he’ll be making a trip to Columbus sometime next year. Richard Bishop must have the best job on earth. I consider myself an able assistant in the task of selling our tri-community region to people around the world in our magazines, printed and digital, my blog and in person. We live in an incredible place at an incredible time.

Back to cancer land: I spoke to Dr. Mike Morse’s physician’s assistant today and she gave me high marks for how I’m tolerating this difficult therapy. I also realize that I’ve claimed this and will likely be slapped down by karma, maybe even by the dose that is dripping right now. But for right this moment, I am here with my best friend, surrounded by some of the best medical minds on the planet in a most beautiful city. All in all, I’m happy. I’m enthusiastic and I’m optimistic about the next few days and for what is to come.

Thank you for all the great Facebook messages and the posts on this blog. Jill and get together and read them every day and I want you to know that these messages of hope and encouragement are hitting their intended mark.

I’m going to regret this blog post if I’m up all night hugging the porcelain throne. Selling Buicks. Talking to Ralph on the big white phone. You get it.

Just as I’m prepared to sign off, the beeping of the power pole next to the bed says that does number 4 is fully integrated into my body. Goodnight!

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.

Looks Like A Go

This morning I reported early for the 9:30 stress echo test. I had just sat down in the waiting room and plugged in my iPad and Matt Baum popped his head out of the door to the treatment area and called my name out like I was being introduced for a comedy roast. Mmiiikkeee Vvennabbllee! Turns out his cheery demeanor and his cheerleading abilities would be important to me once they introduced me to the treadmill.

I haven’t ever had one of these tests, so this was all new ground for me. Here’s how it went: First, you lie down on a hospital bed and they get a resting heart rate and blood pressure. Then I was asked to stand up and Matt went at a double handful of spots on my ridiculously hairy chest with a safety razor. After he created a pile of hair — enough to build a complete toupee for Howie Mandel — he filled those freshly shaved gaps with stickers that contain contact points for the wires he plugged in.

By the way, Matt Baum went to Shaw High School in Columbus! I told him that I had a surprise for him when the test was over (if I lived through it). He was interested in what was going on with the Chattahoochee and I whipped out my iPad after my test and wowed him with videos of the Thursday and Friday rafters from last week. He was stunned. Wants to come back and see it for himself.

So, back to the stress echo. Once I was wired up, another technician came into the room and did a cardiac ultrasound. That wasn’t much, except for the goo that was left on my skin. Once that part was over, I was asked to stand up onto the treadmill. Matt explained that he would be asking me questions about how I feel during the test. I was asked to tell him about how much exertion I was feeling (on a scale from 6-20) and how I felt I was breathing.

Then they turned it on and I started walking. The plan is to push you to your maximum heart rate and really get the heart pumping. He predicted my maximum heart rate would be about 161 beats per minute. I made it to 162 before I felt like I just couldn’t breathe. Then I was plopped back down on the bed and underwent another ultrasound of the heart.

I think I must have done well because they were both complimentary of how things went. Dr. Michael Morse will review the stress echo study tomorrow and my insurance will be checked and if all looks well, we should be good to go early next week.

This afternoon, we met with Dr. Morse. He just left the John B. Amos Cancer Center last week for a speech he made to caregivers there. He is exceedingly knowledgeable about certain types of cancer, including melanoma. Melanoma is an immune system cancer, as is renal cell cancer.

He answered all of our questions. We’ll start the therapy on Tuesday. We’ll check in around 1 p.m. and do some paperwork and some labs. They’ll settle us into the intensive care step-down room (where Jill will be allowed to stay, too) and they’ll put in a picc (peripherally inserted central catheter) line. The picc line will deliver the HD-IL2 straight to my heart, where it’ll disperse on a mission to wake up and piss off natural killer cells so they can seek out and kill this cancer.

Here is the plan: We will likely come back home on Sunday, September 9. After a few days to recover, we’ll report back to Duke on Monday, September 17 for five more days of HD-IL2 infusions. Then back home on or about Saturday, September 22. That will constitute round number one of a possible three or four rounds. They will continue infusions until either A) I throw in the towel, or B) I’m in danger of developing life-threatening complications or C) I become delirious or exhibit bizarre hallucinations. The goal is to get as many as 14 doses per five-day stay.

I like Dr. Michael Morse a lot. He is extremely bright and is easy to talk to. He says they’ll exact an agressive application of this therapy, but that they’ll stop short of forcing me into kidney failure or something worse. Now that I think about this, this therapy is much like that stress test. Go until you can’t go any more is the plan.

They will do CT scans about a month after the start of the HD-IL2 therapy. If there is tumor shrinkage, round two will be ordered. If there is stability, round 2 will be ordered. If the tumors are larger, I’ll be declared an HD-IL2 non-responder and I’ll immediately go on one of the TKI therapies and prepare for surgery to remove the left adrenal gland and some sort of cryotherapy (or other ablation treatment) to deal with the two small tumors in Strainer.

We’ll leave to come back home tomorrow morning and we can’t wait to see friends, family and co-workers!