Columbus and the Valley

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.

 

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.

 

It is Time to Fly

We have our first appointment with a renal cell cancer specialist on December 30 at noon. Dr. Janice Dutcher is at Roosevelt Hospital on 10th Avenue in New York City. Here’s some info on her: http://www.docnet.org/physicians/phys_bios.aspx?phys_id=12541

I have known of her since my diagnosis, because of her incredible reputation among the couple of thousand kidney cancer patients with whom I correspond daily on acor.org. She is one the world’s authorities on the high-dose interleukin-2 (HDIL-2) treatment that I will likely take as a next line of therapy. I have exhausted my possibilities with radiation therapy at the offending spot in my spine. According to Dr. John Cabelka, my radiation oncologist, when disease progression is proven in a spot in the spine that has previously been treated twice with radiosurgery, there can be no more radiation treatments applied in that are.

Dr. Pippas has told me that any further surgeries to my spine will likely end in my paralysis. I’ve asked Dr. Gorum about this, but I haven’t heard his emphatic opinion yet. Whatever his response, it is becoming much more critical that this tumor be stopped. Systemic therapy is the next best path for me. And the sooner, the better.

Jill and I are flying to New York City on December 30 for a consultation with Dr. Dutcher. The big determining factors about HDIL-2 is whether I’m fit enough to weather the treatment. Dr. Pippas thinks that I will be able to take it on. My guess, is that if Dr. Dutcher blesses this therapy for me, we’ll likely have it administered at Duke University Hospital with Dr. Dan George, whom Dr. Pippas knows well. In fact, Dr. Pippas has consulted with Dr. George throughout the time he has treated my RCC.

So, the journey continues. We are hopeful that HDIL-2 is exactly what I need at this moment. My prayer is to be among those in the small percentage who are cured by HDIL-2. I intend to bring it when the time comes. Although, I will be completely out of it most of the time, I know Jill will be by my side and watching over me. She is an indescribably perfect mate. And when I’m sick and down, she turns into some kind of warrior monster. I’ve seen it happen. She is the mother lion whose family you had better not f&#k with.

I’m completely terrified of this next treatment. I’m seeking the advice of the best doctors in the world and their nurses, techs and staffers will also be world-class. I’m so thankful that Jill will be beside me. I’m guessing that the actual treatments will begin early in January. We’ll know more when we talk to Dr. Dutcher and Dr. George.

In this Christmas/Hanukkah season, Jill and I and our children and families want you all to know how much we appreciate all your love and kindnesses while we battle this cancer. I have chosen to open my life to the readers of this blog. It is apparent that everyone within the sound of my voice is going to have to deal with cancer. Either in person or within their family or circle of close friends. I don’t wish this on anyone, but if my words bring solace, strength or a sense of direction for a single person, then all of the effort I’ve taken to communicate my feelings will be worth it.

E.D. (Hint: Doesn’t Stand for Erectile Dysfunction)

Yesterday morning, Jill and I decided we were on the road to nowhere. A call to Dr. Pippas and an explanation of the depth of my exhaustion and the severity of my pain sent us packing to the beautiful, newly-renovated and improved E.D. (Hint: does stand for emergency department) at The Medical Center. Although I’ve seen photographs of the $25 million dollar renovation project, this is the first I’ve seen it with my own eyes. Even though I was in big time pain, I could see the fabulous work that has been done.

The waiting room is huge, bright and nicely appointed. I like the colors that were chosen. Despite the beauty of the front of the house, the waiting room was just a small taste of the wow factor that appeared as we pushed through the doors to the business end of the new emergency department. WOW! Wide, well-lit halls and a double handful of private rooms with flat screen TVs. I remember the old emergency room at The Medical Center. What an incredible transformation.

It is a good thing we liked the new look, because we were there all day. We were an unexpected part of Dr. Pippas’ day on Monday, so I’m not bitching about the length of time it took to get us into a room. He decided that I needed to be admitted to get a good look at what might be the source of my debilitating pain and to put together a pain management plan to be able to deal with it at home, a place that doesn’t offer intravenous pain medication.

They got me comfortable as soon as we hit our room in the emergency department with IV demerol and something to prevent nausea. Dr. Drew Williams runs the place and he was hands on with us from the minute we arrived. Thank you Dr. Drew! Finally, out of pain for the first time in many, many days. Dr. Gorum and his affable PA, Henry Aucoin stopped by to check on me and to order a CT scan to inspect the results of their very difficult surgery of three weeks ago. After much scrutiny, they came to report that my newly-rebuilt lumbar spine is spot-on and exactly where they left it before the seven incisions were closed.

I got an interesting explanation of my “innerds” as Dr. Gorum called them. I love it when really smart, gifted brain surgeons can be real people and bring their personalities to their job. Dr. Mike Gorum is as real as they get. So talented and I’ll tell you that I’ve seen him in action with a few people I know and also with a few people whom I love and they will all tell you that he is always reluctant to operate. Imagine that, a surgeon who operates only as a last resort. I don’t know about you, but I want that kind of restraint from my neurosurgeon.

As a disclaimer, I want to report that Mike and I are also friends. I’ve ridden quite a few miles of road with Mike Gorum on our bicycles, too. The man never gives up! “Hey, let’s race to that sign up there.” “Hey, I’ll race you to the top of that hill over there.” You know what? I also want that kind of take-no-prisoners competitiveness in my neurosurgeon.

So, Dr. Gorum tells me today that I’m possibly the most muscular patient he’s EVER operated on. It is my psoas muscles. He says I have “enormous” psoas muscles. Henry put it a different way. Henry said I’d have made great tenderloins. These guys crack me up! The psoas is the same muscle as the beef tenderloins. They run down both sides of the backbone of the critters that we eat and also in us humans.

My “honkin'” psoas muscles had to be negotiated during my surgery and the one on my right is angry and inflamed. That is the source of my pain and I am confident after a meeting with my surgical team that it will settle down after the time it needs to get back to normal.

When we got settled in our hospital room last evening, they brought out the big guns. IV dilaudid for pain and ativan to help me sleep. Only one dose of the pain medication and I was given the wonderful gift of 10 hours of sleep. Ensley, the nurse manager on the 7th floor had a hospital bed rolled into my room and Jill finally got a complete night of sleep, too. Her nights of sleep have been cut short lately dealing with me. If they gave out an academy award for spouses, she would win in two categories: Best Wife on Earth and the lifetime achievement award for Most Patient Wife on Earth. Her long-sufferingness has exacted a toll on her that I haven’t taken for granted. I also want every person within the sound of my real voice, my blog voice and my Facebook voice to know that I appreciate every little thing she does to show how much she loves me.

I don’t know many women who could have done all the things she’s done to keep our business on track, and been a perfect mother to our four sons, a great daughter to her mom and a leader in our community and in our church and a loving, long-suffering spouse of a sick, needy man and to have done all of this with such grace. How, oh how, did I ever deserve Jill Tigner? I love you, possum. I hope we get many, many more years together for me to sicken people with my unabashed love for you.

We left the hospital this afternoon with several things accomplished. We have a pain management plan in place that has me taking some high-powered pain killers that are time-released and should provide steady, pain abatement while leaving me clear headed for work and able to go about my daily life until my psoas muscle decides to settle down and stop causing me pain.

Tonight is a first night run at home. I’ve taken the 12-hour pill and I plan to utilize the ativan to get to sleep. I need a homerun of sleep tonight to get back my confidence that I can even get a good night’s sleep at home. It has been two weeks of pacing at night and catching hour long naps in every chair and sofa in our home. I need a good one tonight.

The second thing we got done today is after a long conversation with Dr. Andrew Pippas, we have decided to go back to Emory for consultation with Dr. Stapleford and another likely stereotactic radiosurgery treatment to my spine at L-1 and for an extra advice from another expert spine surgeon Dr. Sandro LaRocca, MD, who saw some additional tumor in that same area in my spine and told us that he felt the radiosurgery was a much better option to remove it than traditional surgery. Again, that restraint. I’m so thankful that my neurosurgeon has the good judgement to know when even his bright mind and steady hands might not be the best thing for their patient.

So, were going back to Emory. Soon. And, Dr. Pippas’ office is helping us put together two files on my case to send on to Dr. Janice Dutcher at Roosevelt Hospital in Manhattan, New York City and Dr. Dan George at Duke University hospital. They are two nationally known renal cell cancer specialists who will weigh in on our future treatment options. I’m especially interested in high dose interleukin 2 (HDIL-2). Google it if you have the stomach for it. It is a brutal regimen of treatment, but it is something I might have to undergo.

I am in this to win it. With my healthcare team, a loving family and a network of friends of epic proportion, we take another step down this scary, but thankfully not lonely road. I’m sorry for the length of this post, but like Jill just said to me, “a lot has happened in the last two days.”

We continue to appreciate your love and your comments to this blog. Jill and I read them together and we know they are a source of so much good for our sons and our parents to know that so many people care for and support us.

Goodnight…and if you see another post from me before the sun comes up tomorrow, I will not be in a very good mood.

Damn cancer. DAMN CANCER! (Thank you, Judy Walsh, for these very direct and eloquent words.) I couldn’t agree with you more.