Columbus and the Valley

Today is Medical Oncology Sunday

At 4:45 p.m. this afternoon, I got my second communication from a medical oncologist — today. Dr. Pippas called me this morning and Dr. George emailed this afternoon from his email account at Duke. Since I sent Dr. George access to my MyMDAnderson.org account, I was able to get the latest labs, doctors’ notes, pathology reports and radiology reports to him straightaway.

Dr. Michael Morse heads up Duke’s inpatient HDIL-2 program. Dr. George has already assigned someone to pull my records together so that he and Dr. Morse can discuss my case. If everything looks good, he’ll be in touch to set up a meeting with the two of them and Jill and me.

I’ve said this so many times before: How do these guys do what they do. I know they work ridiculous hours during the day and then they find the time to contact anxious patients on a Sunday, when they ought to be resting. My hat is off to medical professionals everywhere. They are dedicated, good people!

I like the feeling of forward momentum.

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.

My Sock Monkey is Fierce!

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!

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.

 

No Call, That’s All

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.