Columbus and the Valley

Sweet Home Alabama

What I do know:
• I don’t have tumors in my brain.
• I don’t have tumors in my lungs.
• I don’t have tumors in my chest, abdomen or pelvis.
• I love my wife.

What I don’t know:

• I don’t know the outcome of my adrenal tumor biopsy.
• I don’t know whether I’ll be having surgery or going on Tyrosine Kinase Inhibitor (TKI) therapy.

We have spent 11 days and untold thousands of dollars and we really don’t know much more than we knew when we left Seale, Ala. In a fews days(4 or 5) we will have a confirmation on whether or not the adrenal tumor is the third renal cell cancer metastasis. There is better than a 90% chance that it is. Once we have that confirmation, I’ll be having another consultation with new medical oncologist Dr. Lance Pagliaro at M. D. Anderson (probably via email or phone). I’ll also talk to Dr. Andy Pippas at the John B. Amos Cancer Center, Dr. Janice Dutcher at Roosevelt/St. Luke’s in New York City, Dr. Dan George at Duke University Hospital and the members of the kidney cancer forum of acor.org. The question is whether to go the surgery route or the TKI route. That is not a decision we’ll make on our own.

We miss our home. We miss our sons, our family, our friends, our co-workers our church mates and our pets. Tomorrow morning we’ll be heading back that way and we’ll be back home Tuesday or Wednesday. Sweet Home Alabama, here we come!

 

Hello From Limboland, TX

As I look around, there is a sofa, bed, kitchen, TV and other assorted furniture one can find on this site. You’d think I was in a hotel room and you’d be right. In addition to it being a hotel room, it is also a tiny slice of Limboland. We just left our meeting with renowned genitourinary surgeon, Dr. Christopher Wood at M. D. Anderson Cancer Center. He has given us sage advice, but not necessarily the advice I wanted to hear.

From studying my file, Dr. Wood told us about “another patient” (maybe a little tongue-in-cheek) of his who had “shopped around and found doctors who performed surgeries and treatments,” without anyone being in charge of a cohesive treatment plan. In addition to the stellar medical oncological treatment we’ve received at home from Dr. Andy Pippas, I guess Dr. Wood interpreted our attempts at getting opinions from the best cancer minds (including his) as a way to find doctors who would be willing to provide the surgery or treatment that we felt WE needed to have done.

I think Dr. Pippas would concur that I, after consulting with Jill, have made all the educated key decisions about every treatment or procedure we’ve had. Dr. Pippas wanted me to go on a TKI (tyrosine kinase inhibitor) systemic therapy over two years ago, but I refused to do it. Except for that one decision, we’ve pretty much been in sync regarding the direction of my care.

So here I sit in Limboland again. Dr. Christopher Wood, famous surgeon, doesn’t want to operate on me. “Yes, the money says that tumor on your adrenal gland is cancer. But, wouldn’t we look pretty stupid to put you through a big operation and it turned out not to be,” he said. “It needs to be biopsied here in our interventional radiology department first. If it is cancer, and we operate, it is highly likely that you’ll have a recurrence somewhere else. Because of that likelihood, my preference would be for you to be on a systemic drug for six months, or until you can’t stand it any more, and if it is cancer, THEN we’ll do the surgery to take the adrenal gland out. The systemic drug would likely shrink the adrenal tumor and would also deal with other problem areas that might exist outside the bounds of what we can now see.”

It looks like all my attempts to avoid a nasty oral cancer therapy might have come to an end. Dr. Wood’s nurse, Jan, is doing everything possible to have a biopsy scheduled early next week. We’ll know the outcome of that effort tomorrow. If we can do it early in the week, then we will stay out here and get that done. It is a two-day process. Regardless of the outcome, we’ll be able to leave to come back the day after the biopsy. If we find out the biopsy can’t be scheduled in a reasonable amount of time, we’ll have to come on back home and make another trip out here fairly soon.

I’m more than a little irritated that we were here until 10 p.m. last night to get a CT scan without contrast that was, according to Dr. Wood, “useless for determining whether or not there is anything going on with your right kidney.” That we stressed so firmly that we didn’t want to leave Houston without knowing exactly what is going on with Strainer and to be scheduled for a diagnostic test that wouldn’t provide that information really chaps my ass. I will be asking some pointed questions about that decision on the next conversation with Dr. Pagliaro.

There is good news, though. All the other diagnostic tests we had performed here yesterday are all in the clear. No issues with mets in brain, lungs or bones, the three places kidney cancer likes to go.

We have a follow-up appointment with Dr. Pagliaro on Monday at 1 p.m. If we’re able to get the biopsy scheduled early in the week, we’ll stay on out here and make that appointment. If the biopsy can’t be scheduled to our satisfaction, we’ll forego the appointment with Dr. Pagliaro and meet with him when we return for the biopsy.

In the meantime, Jill and I will do what we do best — enjoy each other’s company. We’re going to laugh, mock people, watch movies, look for great hidden restaurant gems, mock people and I will be sharpening my tongue for my next visit with Dr. Lance Pagliaro.

Check, Check, Check

Jill and I decided to make a road trip out of our upcoming journey out to Houston’s M. D. Anderson Cancer Center. We travel well together. Easy, like a Sunday morning. Amish grocery stores, funky shops, great local restaurants way off the beaten path and maybe an occasional casino might catch our attention for either a few minutes or a few hours. We haven’t done that for a while, so we decided to get some good face time while we’re getting some windshield time as we nervously await the news of where this cancer journey is going to take us.

I know we have the love of this community going with us, like the Verizon network. Every day, someone approaches me to wish us good luck and Godspeed. More often than not, I don’t remember their name, but they know me and they are pulling for good news for us. That is the power of love.

We’ll be blogging along the way with my iPhone, so it will be brief until we get to our hotel. I will log an extensive post after we’ve had a chance to experience M. D. Anderson’s world-class reputation and get to visit with Dr. Pagliaro. Since it is almost a certainty that the adrenal gland tumor is a renal cell carcinoma metastasis, we’ll be praying for three things:
• We get to work with surgeon, Dr. Christopher Wood
• We get a quick surgical date
• That they also get a chance during this surgery to biopsy the cyst/tumor/suspicious spot on Strainer

Regardless of your religious persuasion, Jill and I will appreciate your prayers, your best wishes, your good karma, your monster mojos, your blessings or a tip of your beer on Monday, July 16. That is the day that will determine our future.

Sorry for this short post, but the real reason for it is to test my blog’s notification system. Many, many of you have reported that although you used to get email notifications of a new post, you’re not getting them any more. Others have said they’ve never gotten them even though they subscribed. Our IT consultant has tweaked the settings and he thinks he’s been able to alleviate some of the notification problems.

I really don’t know how to do this. Maybe this would work: If you notice something different (hopefully better) about a notification for this post, please post a comment on the blog to that effect. If I don’t hear some good news on that front, we’ll continue to try to find a good way to let people know when there is new content here.

There’s a Hole in Daddy’s Arm

I’m in the infusion suite at the John B. Amos Cancer Center. Sirius Deep Tracks channel coming through my headphones, needle in my arm pumping fluids in advance of tomorrow’s MRI with contrast. I’m in my favorite spot in the southeastern corner of the room. I guess it is my writing spot, because when I’m here, in spite of all the carnage that is taking place around me, I’m immersed in music and inundated with words.

This MRI is one of the regularly scheduled ones. Nothing alarming going on in the chest/abdomen/pelvis zone that I know about. In the interim between my last stream of posts and today, I’ve had a thyroid biopsy and am scheduled to get the results next week. I’m holding onto hope that this is a benign situation. Nobody deserves to be pounced upon by two different cancers. But even if it is bad news, thyroid cancer is kindergarten compared to renal cell cancer. I’m truly not worried about it. Maybe it is the celexa. Maybe it is my battle-hardened badassness. Or, maybe I’m just stupid.

I have really gotten tough minded about cancer. I feel badly about my response to a longtime, good friend’s admission to me that he is facing early-diagnosed prostate cancer. I remember thinking, “that ain’t shit, brother!” But, thankfully, I tempered my response to something like, “Well, that’s a good one to get if you gotta have one,” or something like that. That was insensitive, at best, and really downright rude. ANY cancer is scary, unwanted and threatening to someone who just got the diagnosis. I intend to try to soften my crusty, cancer-scarred exterior when I’m talking to cancer newbies from this point forward. I should have provided a soft shoulder and a dose of hope for a good outcome. I’d like to put that one on rewind. The one I likely offended reads this blog. This serves as my apology to him and to his beautiful wife. The older I get, the more apologies I find I have to make. I hope I’m around long enough to irritate many more people. I find a sincere apology can go a long way toward mending fences and sustaining long-lasting frindships.

I’ll be writing about the upcoming MRI results and the feedback from Dr. Leichter about my thyroid situation. I’m looking for good news from both of those tests. I’m energized with spring in the air and the prospects of getting back on my bicycle and getting back onto the water in a kayak.

If you’re a regular reader of this blog, you know about my interest in drum circles. I have started a facebook page that I hope is going to help us draw a crowd for the launching of a drum circle in UpTown Columbus. Please take a look, like the page, and get ready to shake something, even it is just your backside. Here is the facebook page: https://www.facebook.com/CSGDrumCircle

 

 

Waiting Game

On Thursday morning at 5 a.m., Jill and I rolled out of our driveway. I was in the passenger seat, like a reluctant Miss Daisy, heading for the Hughston Hospital for the second biopsy of my L-2 vertebral body in 8 days. This one was quite a bit more difficult than the first. [Read more…]