Emory

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.

Good Report Today

I am so sorry that this post is coming so late. I only slept for about 3 hours last night and when we hit our hotel room after our appointment, I took a much needed 2.5 hour nap. I got up just in time to meet two of our sons and Michael’s girlfriend for dinner. We just got back to the hotel room and so I’ve settled in to write.

Dr. Stapleford came into the treatment room today after viewing the MRI scan results and said, “Nothing has changed.” I looked at her and while I was staring I was thinking, “I came into this place with cancer in my spine and you’re telling me nothing has changed!” I wasn’t liking the way this was going. And my dad sent us up to Atlanta with some of his semi-world-famous peanut brittle for the doctor, too. Unless something changes pretty quickly, this peanut brittle is going back home with us.

So the questions started flying. What do you mean nothing has changed. Is that good? “Oh yeah, that’s good,” she said. Turns out what the good doctor was saying is that the hole that was left in my spine at L-2 is still there and it is still the same size. Although they can’t reach in there and look for individual cancer cells, if the radiation did its job, there should be nothing but dead tissue inside the hole in my spine. “Nothing’s changed” is good. Chances are good that the high dose of radiation killed the tumor, because if it wasn’t dead, it would likely have grown over the past few weeks since the treatment.

She poked and prodded. She asked more questions and determined that we should follow up with Dr. Pippas, Dr. Gorum and do another MRI without contrast in 3 months, which we’ll have done at The Medical Center. She is quite thorough and at the end of our appointment, I whipped out the peanut brittle and handed it over. She is quite thin, so this should be good for her.

So, the news is good and we’ll be meeting with Dr. Pippas this coming Monday, January 10 to discuss next courses of action. We’ll probably start an infusion of a drug called Zometa, which should help strengthen my bones against another metastasis. That is one of the things on our list to talk to Dr. Pippas about.

We’re both pretty tired and we’ll head back to Columbus tomorrow afternoon after a seminar we’ll attend in the morning up here. Once again, thank you all for your good birthday wishes and your concerns about my health and the welfare of our family. Also, please say a prayer for our friend Fred Morgan, who is having renal cell carcinoma surgery tomorrow morning at M.D. Anderson in Houston. He is really on my mind right now.

Please forgive me for the late post and thanks for following my blog.

Scanxiety

We leave tomorrow morning for a quick trip to Emory for a follow up on my radiosurgery with Dr. Liza Stapleford. I had an MRI without contrast media last week. Since Dr. Pippas ordered the MRI, he’ll have to give the OK for the radiology department at The Medical Center to release a disk containing the scans for us to take to Atlanta. What I’m hoping we get is a brief report that all is well and that the stereotactic radiosurgery did what it was supposed to do. If I get my best birthday wish, she’ll say that the tumor is dead, that she doesn’t see any more problem areas and that the hole left in my spinal vertebra will heal with time without any structural issues.

My kidney cancer friends call these days scanxiety days. I know why. Despite the Christmas, New Year and birthday holidays, I have been doing a pretty good job of pushing the worry back. With an answer coming tomorrow, tonight will be a different story.

Now, before any of you who I have recently drunk dialed get excited, there will be no Xanax on this trip. So, Joe McClure in particular, I won’t be calling you to grill you on any of the lyrics to songs you’ve written. Rusty Scoven, I won’t be called you to talk about pineapples and, Michael Venable, I won’t be asking you to bring me any cupcakes. I’m hoping this is just a short trip to Atlanta to have a chat with a cute radiation oncologist. I will be blogging again tomorrow and I hope I’ll be telling some good news.

2011, don’t let me down!

John Henry’s Special Day

Let me say right up front that it was shocking for me to see what a fat ass I am on television. And, knowing that I was going to look like a fat ass and still charging forward with this, shows just how much I wanted to make this helicopter flight happen for that sweet boy. Seeing the look on John Henry’s face when that chopper got down to treetop level was worth all the fat jokes I’m sure my friends are too nice to tell, but that I will tell on myself. I am more than happy to take one for the team.

Here’s why:

This is a story that has so many facets. This may be a long post, so just get out a box of tissues and settle in with me for a while. With the news of the re-occurrence of my kidney cancer 17 weeks ago, I have been in a state of mind that I’ve never before had to experience. The bruising pressure of knowing you have a tumor inside of the bone of your spine that could grow astoundingly fast and that you are powerless to move the practice of medicine along fast enough to get it taken out in a timely manner (at least, timely to me) is crippling.

During the 15 weeks I spent waiting for the radiosurgery at Emory, I had periods when I couldn’t concentrate. My mind would start running scenarios about possible outcomes of this cancer. One minute I could see myself healed and whole. The next, I would think about what kind of funeral I wanted. Blissfully happy one minute and lower than a snake’s belly in a wagon rut the next. I did all of this without medication and with a single counseling session with my good friend Stephen Muse at The Pastoral Institute. He agreed to see me, even with his huge caseload, but we agreed there wasn’t much he could do for that that I couldn’t do for myself. I was just sad. Even with my incredible wife and children, I was sad. While still having both my parents and a mother-in-law whom I love, I was sad beyond belief.

The cancer is here. I can’t do anything about it. It is incurable over 90% of the time — an auto-immune juggernaut waiting to metastasize and take me down. This is the way you think when you know there is a malignant tumor growing hot inside of you. What a person in my condition has to do is learn to deal with the sadness. Sometimes it can happen on its own and sometimes it takes an unlikely event to snap you out of the doldrums of a cancer reality.

Then John Henry Clark came along. Bouncing up the sidewalk in his stroller on a cold Saturday morning with an enormous grin and some healing Christmas mojo that he didn’t even know he had. I got that photo. It really is special. So special that I couldn’t get it out of my mind. I kept looking at it and it moved me to tears every single time. There must be some reason this picture touched me so.

Then I heard about his love for helicopters and I knew what I needed to do. I want to thank all the law enforcement folks that made this flight happen today. These guys are the real heroes of the day.

There is much more to this story. That’s the way stories are. I needed John Henry on Saturday. Someone else needed him today. Local WRBL employee, Reggie Phillips, has also been sad during this holiday time. He lost her 24-year old son, John on February 1 of this year. He was a Down Syndrome child, too. John Henry’s thing is helicopters. John Phillips’ thing was Christmas.

Reggie called co-worker Pegi Taylor this morning and said, “I can’t get my Christmas spirit.” She is missing her son, John, and the perpetual Christmas he brought into her life. Pegi asked Reggie to meet her at South Commons this morning at 10:30. Although she didn’t know why, she braved the drizzle and stopped by John Henry’s party this morning. Seeing his joy, his smile and the unconditional love he spreads wherever he goes was just what she needed to open her heart to a Christmas without her precious son.

John Henry’s story is really a story for all of us. What is more healing than a smile, a hug, or a wave from a little blond boy wearing a badge and a crooked cap. It is impossible not to be touched by this little man with the big Christmas spirit. This has been a great day.

Now, I’ll share some great photos taken by my friends Wesley and Neely Ker-Fox, who responded to my call for help at the very last minute this morning, when we realized this flight was going to happen. Thanks, guys!

Round Two is Over

Here I sit, finally back home, in my leather chair and completely exhausted. We stopped by the office for a few hours late this afternoon to get some pressing things done. I made a few phone calls, mostly to family, but I made one very special phone call to my friend (not my doctor at the present) Dr. John Cabelka. I’ll get to that in a moment. [Read more…]