Columbus and the Valley

Sweet Home Alabama

What I do know:
• I don’t have tumors in my brain.
• I don’t have tumors in my lungs.
• I don’t have tumors in my chest, abdomen or pelvis.
• I love my wife.

What I don’t know:

• I don’t know the outcome of my adrenal tumor biopsy.
• I don’t know whether I’ll be having surgery or going on Tyrosine Kinase Inhibitor (TKI) therapy.

We have spent 11 days and untold thousands of dollars and we really don’t know much more than we knew when we left Seale, Ala. In a fews days(4 or 5) we will have a confirmation on whether or not the adrenal tumor is the third renal cell cancer metastasis. There is better than a 90% chance that it is. Once we have that confirmation, I’ll be having another consultation with new medical oncologist Dr. Lance Pagliaro at M. D. Anderson (probably via email or phone). I’ll also talk to Dr. Andy Pippas at the John B. Amos Cancer Center, Dr. Janice Dutcher at Roosevelt/St. Luke’s in New York City, Dr. Dan George at Duke University Hospital and the members of the kidney cancer forum of acor.org. The question is whether to go the surgery route or the TKI route. That is not a decision we’ll make on our own.

We miss our home. We miss our sons, our family, our friends, our co-workers our church mates and our pets. Tomorrow morning we’ll be heading back that way and we’ll be back home Tuesday or Wednesday. Sweet Home Alabama, here we come!

 

The Young Bull says to the Old Bull…

Friday is the day Dr. Pippas does his administrative work. I don’t know how the man gets everything he has to do…done, even with a Friday to tie up loose ends. Since Friday is his paperwork/research day, I was hoping he’d be able to sandwich in a phone conversation with me about our trip to Durham, NC to see Dr. George.

He returned my call within minutes and I told him Jill and I had heard what nurse friend Sandy Gunnels called a “diametrically opposite” plan of action from the one I had heard from Dr. Janice Dutcher on our visit to see her in New York City. Renowned renal cell specialist, Dr. Dutcher says that HDIL-2 (high-dose interleukin 2) is our next-best course of treatment.

Renowned renal cell specialist Dr. George, at Duke University Hospital, says HDIL-2 is way down the list of things he’d recommend we do right now.  Dr. George was emphatic: “HDIL-2 will not keep this cancer from returning if that is what it wants to do. If you don’t have disease anywhere other than your spine, and if it returns there, you have a better chance of controlling it with a TKI (tyrosine kinase inhibitor). Hands down,” said Dr. George.

Dr. George continued: “HDIL-2 could kill you. It could create a cardiac event. Those things are rare, but possible. What it will do is ravage your body, potentially causing organ damage and positively causing great suffering.” Basically, he doesn’t see any value right now in putting us through this toxic treatment.

As Jill and I sat there and as I realized where our conversation with Dr. George was going, I felt the air leaving my body. The palpable let down of a fight reflex when your attacker has either stood down or walked away. There was an immediate transformation in me from fighter to waiter, and not the kind of waiter that gets a tip for good service. The kind of waiter that sits at a bus stop on a graffiti-covered bench in the cold, waiting for the next mode of transformation (intentional use of wrong word) to move you toward a tangible cancer therapy.

I’m like the old bull in one of my favorite old jokes and the vulture on a great T-shirt: A young bull and an old bull were standing on a hillside looking over a valley pasture of grazing cows. Young bull says to the old bull, “Why don’t we run down the hill and screw one of those cows?” The old bull says, “Why don’t we walk down there and screw all of them.” The vulture on the T-shirt is standing on a limb, high up in a tree, looking extremely vulturish. The caption says, “Patience, my ass, I want to kill something!”

I want a plan. I want it to be as aggressive as I am. I don’t see myself being comfortable waiting. As I said in my last post, I’m locked in a perpetual state of advent.

The really good news is that Drs. Goldman, Gorum and Cabelka and a host of other physicists, pharmacists, physicians, nurses and techs have done great work for me. The tumor is my spine is gone. There is nothing visible anywhere in my body that makes my medical team concerned that my life is being threatened. I can hear you saying, “why don’t you just quit your bitching, go back to your life and be happy you don’t have to take these awful drugs!” The answer to that is, “I know this cancer WAY better than you do. I now how sneaky it can be and I know how quickly it can make you dead if it decides to light up and run.” This knowledge is what makes me restless.

I have talked to Dr. Pippas about a third opinion — a “tie-breaker.” We’re discussing that now and I told Dr. P that I think this next opinion should be made without me in the room. I want to send my records to another RCC specialist and have them weigh in without my large, vocal, demanding personality in the room. Jill thinks my running commentary could have skewed the conversations with Drs. Dutcher and George. She’s probably right. She usually is.

So, for a short time, we’re back to waiting. Dr. George will call me within two weeks and let us know if there is some type of new scan available that is super high-definition with kidney friendly contrast media. That would be great, if we could have some type of super-scan that will once and for all determine if there are any bits of cancer in other areas of soft tissue or anywhere else in my bones. If we have that scan and it comes back negative, I can relax and be OK with another wait.

I will NOT, by God, be standing here flat-footed, doing nothing and be taken down by this cancer. If this bitch wants me, it is going to have to come at me with a bloody mace in one hand, a butcher knife in the other and a mouth full of bloody teeth. If it gets me, I’ll be out of bullets, with no fingernails left. I won’t be sitting in this chair waiting to hear the tap on my front door. You can take that to the bank.

 

Dr. Dutcher Meeting Video

After much cussing and fidgeting, I have finally figured out how to edit (crudely, and with huge apologies to Hal Pope and other friends who are professional video people, who are going to laugh out loud when they see what a sucky job I did editing this video) and get it posted to YouTube.

Because I have taken so long to get it figured out, I’m going to post it without much comment. It is fairly long (over 24 minutes), but to get the opportunity to see this world-class doctor talk about what she is so good at is a real treat. At least is was for us. My editing job may make it like watching paint dry for you.

Here is the video:

 

Pork Rinds at a Bar Mitzvah?

First of all, a big thank you to the angel who provided flight time for us today. What got accomplished in exactly 11.5 hours would have taken two whole days and more energy and expense than we had to throw at it right here at the holidays.

Despite the great flying accommodations, it was still a very stressful day, and we are exhausted from all the stress and conversation. Roosevelt Hospital is well over 100 years old, located in the Hell’s Kitchen area of lower Manhattan on 10th Avenue at 55th Street in New York City. Funny story: Our cab fare from the airport to the hospital was $102. The return trip cost us $56. Go figure! Guess which trip was made in a yellow car? By the way, it was a 20-minute drive. I’m in the wrong business!

I had completed all my new patient paperwork and sent them to Dr. Dutcher’s office a couple of weeks ago, so the check-in process was a breeze. The people we encountered at Roosevelt were extremely nice and helpful. When we got off the elevator on the 11th floor, we must have looked like a package of pork rinds at a bar mitzvah. A guy walked up to us wearing a welcoming smile and with his arms extended out to his sides, palms facing us, said, “Baby, or cancer?” Both the maternity stuff and the oncology stuff are on the 11th floor. As we approached the check-in office for Dr. Dutcher, we ran into the same smiling guy who engaged us in another upbeat exchange of words. He was such a great ambassador for the hospital. He seemed to enjoy his work and honestly, I don’t know what his job is, beyond making Alabama people feel comfortable in a strange place.

Before I get to what you really want to hear, I want to tell you another story about the elevators. There is a “Sabbath Elevator” at Roosevelt. During the sabbath and on Jewish holidays that elevator is programmed to stop at every floor, no matter who is on it or where they’re wanting to get off. I know that strict observers of the Jewish faith can’t turn on lights on sabbaths and holidays. Now, I know they’re also not supposed to press elevator buttons. It is interesting being in a big city surrounded by so many people who are different from you. Interesting and fascinating.

By the way Gayla and Sandy, we were two blocks from the Columbus Circle Mall, which is next door to the Time Warner building. It is three gargantuan floors of every kind of shop, restaurant and boutique you can imagine. I thought of you both when we walked through those revolving doors looking for a place to lunch. I know you two could have done to damage to your Visa cards in that place!

We checked in and while we were sitting there waiting, Dr. Dutcher walked in. I said, “I know that face! Hello Dr. Dutcher.” She said, “You must be Mike.” She only scheduled four appointments today, so it was easy to know them by name. We only waited for about five minutes before we were escorted to a consultation room.

I promised video. I have about an hour of video of our meeting, but I won’t be able to post it until tomorrow. First of all, I don’t know how to post it, and I’m just too tired to fiddle with it tonight. That will give me something to figure out tomorrow.

That reminds me of one of our most cherished family stories, and my son Michael is going to kill me for this. When he was five years old, he came roaring into our great room like a house on fire. I was sitting there watching TV and he ran right up to my recliner and said, “Dad, does your penis get big sometime?”

OMG, this was it, I thought. This is the time when I’m not supposed to lie. I’m supposed to answer the little guy directly. Nothing more, nothing less. Just answer the question. So, I did. “Yes,” I said — hoping that was the end of it — and he’d go on back to, Lord only knows, what he was doing. He didn’t. He continued, “Is it cause you’ve been fiddling with it?”

“No,” I said. What the hell, I wasn’t going to go THERE with a five-year-old. “Okay,” he said and roared back out of the room. I was thinking, “Well, alrighty then, that went better than expected.”

But I digress.

Dr. Dutcher came into the room and Jill and we over the renal cell carcinoma history, all my medications, surgeries and procedures. One at a time, she popped in the two disks I had mailed her containing the images from the recent CT and MRI scans. After much discussion and many questions from her and from us, she has agreed that the HDIL-2 procedure is the next best step for us.

I will outline her protocols in my tomorrow post, but we determined that it really doesn’t make sense for me to have this therapy in New York. Dr. Dutcher is very familiar with Dr. Dan George and Dr. Andy Pippas, my oncologist, is a Duke colleague of Dr. George’s. Duke is the place we need to be. Dr. Dutcher said there were three facilities that she would recommend that are nearer to us. One of them isn’t in Atlanta. So, we’ll be making a drive up to Durham as soon as I can get an appointment and have a talk with Dr. George. If we are satisfied that he will be agressive enough, and if I can pass the physical testing that will be done to assure that I’ll be able to withstand the therapy, we’ll likely do this at Duke University Hospital.

Dr. Dutcher says that about 30% of people respond to the HDIL-2 therapy. Respond means that the tumors in their bodies shrink more than 50%. Seven to ten percent are complete responders. Those are the lucky ones where the disease disappears and stays gone. I want to be a complete responder.

I want to be able to live much, much longer and continue to be able to embarrass my children. Sorry, Michael, you are a beautiful man. You were a beautiful child. And, that was a beautiful story. It just needed to be told.

This was a good day. HDIL-2 is a good option for us. It is one that could cure me. Even with the side effects that we know it will bring, I’m ready to take it on. The sooner, the better.

 

Early to Bed

I had a nice conversation with Dr. Tamorie Smith this morning. I was up front with her that I had beaten her up pretty badly in my last evening blog post. She was really nice and we had a great, although short, conversation. She answered all my questions with professional ease and I feel good about the medication Dr. Shah prescribed and the prospects of controlling the gout for the future. The pain is almost completely gone in my toe and I’m able to move it with ease.

That is a good thing, because I’ll be doing some walking tomorrow in New York City before our appointment with Dr. Dutcher. We fly very early in the morning, so we’re just about to turn in and try to get some sleep.

Jill and I really appreciate the outpouring of love and support from so many people as we prepare to take this next step on the journey to beat this cancer. I got a call tonight from someone who has a very similar tumor in his spine to the one I had. He is seeking some feedback from my neurosurgeon, Dr. Mike Gorum, because of the good outcome I had from my very tricky operation.

I also want to thank Chuck Williams and photographer Mike Haskey for the very nice Sunday story and photos in the Columbus Ledger-Enquirer. They did a great job and I’m particularly happy that the Salvation Army got some great ink during a vital part of their year. They do so much good work across the country for people who are in need, especially during the holidays. I was happy to ring that bell again this year!

Just a short post to say thank you to our legion of supporters. We go tomorrow with hope, determination and the knowledge that our “Verizon Network” of supporters will be right there with us throughout the entire trip. I just wish Dr. Pippas could be with us. And Gayla and Sandy (two Hardaway High School classmates and also medical professionals who volunteered to go along with us) who are just trying to wrangle a shopping trip to NYC, I’m sure.

Goodnight. I’ll post again tomorrow as soon as I can. I also hope I’ll be able to upload some video of the meeting with Dr. D.