Columbus and the Valley

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!

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!

 

Take It Easy On the Staff

I could not be more excited about our meeting with Dr. Dan George today. It is so nice to be in the presence of a super doc who doesn’t act like one. He is approachable, nice as hell and Jill says (and I have to admit) he’s a fine specimen of a man. We had the chance to meet a Duke Fellow, who is here from Singapore, who preceded and accompanied Dr. George during our 30-minute meeting.

Since I did an audio recording of the meeting on my iPad, I have some excerpted some quotes from Dr. George:

“You’re a lot earlier on than many of my patients, Mike. Although, HD-IL2 is a great therapy, it is still a crap shoot at the end of the day. HD-IL2 has a lot of collateral side effects. You’re going to be sicker than you have probably ever been in your life. There is a 30% chance at a partial response. The partial responses from this therapy last, on average, for about three years. Complete responses happen about 5% of the time.

“For this cancer to spread to the adrenal gland and to the other kidney, there is no direct line there. This cancer had to get into the bloodstream, go up into the heart, go around the heart and into the lungs, back out the lungs, back into the heart, down the aorta and into the adrenal glands and kidney. To take that route — and there is no shortcut in the body — these cancer cells must have dispersed to lots and lots of other areas. The fact that the only place we’ve seen it grow is in that one spot in the bone of your spine — that we took care of early on and we have not seen it come back — and now we’re seeing it in places that are not random spots. The adrenal glands and the kidney share something very much in common. They are endocrine glands. They secrete proteins that have effects on different parts of the body. Your fight or flight response, muscles, brain and heart. Your kidney secretes a hormone, erythropoietin (EPO) that goes into the bone marrow to make more red blood cells.

“To me it is not random that the three spots where we’ve seen this cancer are in endocrine organs. What that tells me is that this cancer is not totally self-sufficient. It can’t grow in a lot of areas in your body or it would have done so by now. It can only grow in these areas that have rich soil. The bone marrow is a rich source of nutrients and growth factors, because that is where we grow all our red blood cells. The endocrine glands are highly vascular. The fact that this grew in the other kidney and is only in these three spots tells me two things: 1) It is not fast growing and 2) These are not totally self-sufficient tumors. And, if we can stimulate your immune system enough for it to recognize that it is different than itself, I think we have a chance to kill this. The time to do this is now. We’ll know very quickly whether the hell we’re going to put your through is working. If this cancer doesn’t respond, it is not going to explode on us. It is telling me that it is not that kind of cancer.

“We’ll do what we have to do to give you a chance at a complete response.”

Then, he looked at me and paused……..and said…….”Can you do me a favor and take it a little easier on the staff?” “What staff,” I said. Then BAM, I got it. My very direct emails and the tone and tenor of my phone conversations have apparently ruffled some feathers up here at Duke. Particularly, the feathers of the person who fielded my phone calls and emails while Dr. George was on vacation. I found out, this very nice person is not a scheduler. She is, in fact, his nurse practitioner, a very skilled and competent right hand to Dr. George. She had the presence of mind to see my anxiety rising and took this on, and I appreciate that. I, in effect, tried to kill the messenger. I will find a way to let her know that I am not a lunatic, but a scared out of my mind cancer patient.

But I’ll have to admit, it thrilled me to be asked to back off. As we left there, I told Jill that I hadn’t even unleashed the full Mike on her. The power of the pen is a very real super power.

Tomorrow morning at 9:30 I have to do a stress echo test and then at 1:30 we meet with Dr. Michael Morse, who runs Duke’s HD-IL2 treatment program. Dr. George says he’s brilliant and will be able to answer any question I throw at him. I hope he’s ready. I’ll post again tomorrow afternoon or evening.