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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.

 

December 30, 2011 | Tagged With: Atlanta, CT, Dr. Andrew Pippas, Dr. Dan George, Dr. Janice Dutcher, Duke University Hospital, Durham, Gayla Ahlquist, HDIl-2, Hell's Kitchen, Jill Tigner, Manhattan, Michael Venable, MRI, New York City, Roosevelt Hospital, Sabbath Elevator, Sandy Gunnels| Filed Under: kidney cancer | 24 Comments

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.

December 28, 2011 | Tagged With: Dr. Alap Shah, Dr. Andrew Pippas, Dr. Clark Gillett, Dr. Janice Dutcher, Dr. Raj Alappan, Dr. Tamorie Smith, Flipcam, HDIl-2, Jill Tigner, Manhattan, renal cell cancer| Filed Under: kidney cancer | 38 Comments

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