Voice of the Valley

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. 

I got the phone call we were looking for yesterday from Dr. Pippas. He has managed to work with Dr. Dan George at Duke University Hospital to get our consultation appointment moved up a full two weeks! The new appointment time is 1:30 p.m. on Wednesday, January 11. 

I have filled out all my new patient forms online (how nice to have them digital!) and have submitted them to the doctor’s office. The scheduling person, Stephanie, wasn’t able to answer all my questions about what might happen while we’re there. Will there be blood work? Will there be scans? Will I take a treadmill stress test? I don’t know the answers to these questions, so I will be packing Xanax, just in case they decide to slide me into a tube, either feet- or face-first. 

Getting this appointment moved up is HUGE for me. I have been a basket case, although a calm one. The way my mind works is that once I have made it up regarding a particular course of action, I simply cannot sit around and wait for things to happen. I want to go NOW. The tone of my phone calls to Dr. Pippas’ office has been, frankly, more intense as I have made them. I think I have been somewhat of a pest, but we have a small business to run and the possibility of the first vacation we’ve taken in a long, long time scheduled, too. We need to keep the business running and we want to be able to take this Caribbean vacation with two couples of our best friends. 

I am thinking, “If we could get this ball rolling, we can do the therapy, I’ll have time to get over it and we can still make the Water Island trip.” That really wasn’t practical, given the time some of this stuff takes. So, with the great gift of an earlier consultation appointment with Dr. George, we’ll be able to learn all we need to know about whether I’ll qualify for the treatment, what we have to do to prepare for it, get out the April magazine and still make our trip. Then, if Duke’s scheduling will permit, we’ll start the treatment as shortly after March 5 as we can. 

With the usual one week on and two weeks off and one week back on scenario, by mid-May I should be cancer free, ready to hug my family and friends, golf, fish, kayak and continue to look for ways to embarrass my children. If I make it through to the healthy conclusion of HDIL-2 that I envision attaining, my next point of focus will be to urge the appropriate parties to produce us a grandchild. 

None of our sons are married. Some are more seriously dating than others. We’d appreciate them getting things done in the right order and all that – but damn it, I want a grandchild! 

When the HDIL-2 purges me of cancer, I also intend to write about other things in the blog than kidney cancer. There is so much more than I can write about! My head is completely stuffed with some useful things to impart and also some useless drivel that only weird people would want to read. Since I have quite a few weird readers, they’ll be happy with those writings, I’m sure. 

Jill and I are reading now, trying to prepare for the HDIL-2 treatment. We won’t know which of the awful potential side effects will bother me. But we have to assume they all will, and be ready with the proper clothing, shoes, lotions, diversions and drugs to counteract them. 

One of my favorite tree-hugger, animals-are-people-too people, Callie Sprague, has convinced me to use visualization so that my mind will condition my body to find and kill these cancer cells. What I may not have said about this particular cancer and the HDIL-2 therapy is interesting. The very toxic drip that they’ll mainline into my heart every 6 hours doesn’t kill cancer. It is designed to ramp up your immune system and allow it to literally rise up and kill the cancer cells, no matter where they are in your body. 

If you’re a regular reader of this blog, you know that Kate Nerone gave me a sock monkey after reading one of my posts in which I referred to this lovable sock-skinned creature. Until that monkey ripped the face off that woman in Stamford, Conn., I would have never considered a monkey as my preferred mascot in an ass-whipping competition. Something with a more fierce reputation, like a honey badger, would surely be a better talisman for my upcoming battle. 

Thanks to Kate, I have a sock monkey in hand. Last time I checked my office, there was not a honey badger in sight, so I will be taking my sock monkey with me for all the HDIL-2 treatments. The monkey’s name is Robert Charles (R.C.) Killer. He’s a seasoned killer, so tortured by renal cells as a baby monkey that he’s developed a lethal hatred for them. A lifetime of bullying by renal cells has hardened him into a single-minded killer. Killing RCC is his only past-time. Uninhibited by hobbies, he has devoted his entire life to killing RC cells within my body. 

Sock monkeys mate for life. The bonding begins as they’re packed for shipping to their new mate. As Kate boxed Killer to send him on his way, the brief stretch of darkness and the incessant jarring as the package made its way to me only served to make him a more lethal killing machine. There is nothing more deadly than a pissed off sock monkey!

When Killer arrived on my desk, I could feel the pent up energy that lay under that packing tape and cardboard. As I ripped the packing material, I had the sense that whatever was inside was doing its job to get out. I could feel the strength of the limbs and claws scratching their way out in order to release the creature into my arms.

Killer has been patiently waiting for me to utilize his particular brand of killing skills. He has perched on a piece of furniture in my office with a cocky look that says to visitors, “Yes, I know I look cute, but I can rip your face off in an instant and show no remorse! Go ahead, try me.” Honestly, I feel much more secure in my office just knowing that Killer is standing guard. 

He was excited to know that I have a real mission for him that will utilize his considerable skills for something more than guarding a magazine publisher’s office. The typical visitor to my office is a fairly non-threatening person. They’re generally not scary, except for the occasional redheaded public relations person who comes by from time to time. Killer is beside himself with just the right amount of swagger and professional pride at the knowledge that he’s about to go up against his most dangerous opponent yet. Renal cell cancer is deadly, unpredictable and sneaky, but Killer has been trained for this day. 

JIll, Killer and I are ready to go to Duke to hear Dr. George’s plan for our future in this next phase of our battle with kidney cancer. Some people will likely make fun of me for carrying Killer. They just better hope I don’t turn him loose on them. 

What Killer, what did you say? “Kidney cancer is my bitch!” Well alrighty then. Let’s go to Duke!

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.

Jill and I are getting ready for the trip to lower Manhattan on Friday. Someone with access to a plane has generously given us some of their flight time for this trip, so we’ll be leaving early Friday morning and coming back on Friday evening. The opportunity to go up and back is a real blessing right now and has, honestly, allowed the trip to happen so quickly. 

I just got off the phone with Dr. Dutcher’s office and she has given her approval for me to shoot digital video at our office visit on Friday. I wanted to do that for a couple of reasons. I want to remember every word she says, so that I can share them with Dr. Pippas, who I’d really like to have with us on Friday. I’d love for my incredible, mad-scientist oncologist, Dr. Andy Pippas, to have a conversation with HDIL-2 guru, Dr. Janice Dutcher,  while I was a fly on the wall watching. That would be great. But the video will have to do, in this case. 

Also, I’m going to consider posting some, or all, of the video on my blog for people to see Dr. Dutcher in action. She is a world-class renal cell cancer oncologist and is highly sought out for her knowledge about this insidious disease. 

If a couple of back surgeries and cancer were not enough, I have developed a case of gout in my right great toe. It hurts like hell. I was able to reach my friend and podiatrist, Dr. Alap Shah, who prescribed a kidney-friendly medication to relieve me of the gout condition. He also recommended that I make contact with my regular family physician, Dr. Clark Gillett to manage the issue going forward. I think all doctors are taking a much-needed vacation here at the end of the year. ALL of my docs are out of the office today. 

I’m a little bummed out that we now have gout to go along with all of my other health concerns on the table as we leave for New York to see Dr. Dutcher. I hope this won’t muddy the water for what we need to do going forward. But gout is caused by an elevation of uric acid in the blood. I figure uric acid must also have something to do with my kidney and I’m worried about it. So, I called my nephrologist to get him to weigh in on this. 

By the way, my nephrologist, Dr. Raj Alappan, who was also not in his office today was supposed to be covered by Dr. Tamorie Smith. I talked to Linda at Dr. Alappan’s office three times today. Twice, when I called her to confirm that I would be getting a call by the end of the day today and once when she called me to confirm my date of birth and that I would be getting a call today. Dr. Tamorie Smith, whoever she is did not call me as promised. Thanks a lot, Dr. Tamorie Smith. No call, that’s all!

I think this is the first time since the diagnosis of my cancer that I have been left hanging with what I consider to be an important medical question. Other than Dr. Tamorie Smith, I have received prompt attention to my every medical situation. 

Wow, I just realized what I said in the previous sentence. “My” cancer. Not “my” diagnosis of cancer, but “the” diagnosis of “my cancer.” Now that I think about this, I’ve heard most other people refer to their illness as “their” cancer. I can understand that feeling, because it literally takes over your life. In fact, it becomes your life. I will not give it that much power over me again. From this very second forward, I will refer to this damn disease as the life-robbing interloper that it is. It is not mine. I don’t want it. I will not lay claim to it again in this blog or in conversation, so help me God. 

I have my Flipcam charged up. We’re ready to fly. On to the Big Apple with a great, hopeful attitude. And, thanks again, Dr. Tamorie Smith.