Columbus and the Valley

Hoping TKI Delivers TKO

Just when you thought it was safe to go back in the water….

I got a call from a physician’s assistant in Dr. Lance Pagliaro’s office today. She is part of the team that is responsible for my care at M. D. Anderson Cancer Center. She, along with Dr. Pagliaro and Dr. Christopher Wood as well as a host of pathologists, radiologists and other “ists,” all work in tandem within the genitourinary oncology clinic.

She informed me that the M. D. Anderson radiologists’ reading of the CT scan that I had done at The Medical Center in June showed that in addition to the left adrenal metastasis (which has been confirmed to be renal cell carcinoma), I also have two small nodules on the upper pole of Strainer, my remaining kidney. That is not what I wanted to hear, but this news confirms that the time has come for me to take one of the tyrosine kinase inhibitors (TKIs) that I have not wanted to have to take.

I have enjoyed a good quality of life during most of the just over three years since the diagnosis of renal cell cancer in May of 2009. These drugs are very potent (an oral chemotherapy is the closest description I can muster) and can wreak havoc with a body. Depending on which one I choose, I’ll likely have to deal with some significant side effects. The hope is that I’ll respond well to the drug and that these three existing tumors will shrink and allow the inevitable surgery to be done sooner and be more successful.

I will discuss my decision with Dr. Pippas here at the John B. Amos Cancer Center who continues to oversee my case. We continue to be confident that we’ve made good decisions throughout this cancer journey and as we prayerfully consider this decision, we plan on making the right one.

I’m guessing the therapy will begin soon, so if I’m off my game the next time we talk, I hope you’ll cut me some slack. By the way, the doctor said I should definitely not vacuum, take out the garbage, empty the dishwasher or cut the grass. I have also been told that I should continue to pester Marquette McKnight, as her only (and also faux) brother.

Humble Pie is On My Menu

We’ve got a down weekend out here in Houston. I miss home. We feel like we’ve been gone for a month. I know I have gained five pounds since we got here. It is always so much fun to explore new places to eat. Restaurants that are different from the places we always go at home. Houston is a huge city. Six and a half million people of all kinds. With such a large medical community (I heard M. D. Anderson employs 14,000) there are people from every corner of the world in this city and authentic restaurants are here to serve them the food they eat at home. We have enjoyed exploring the tastes and ambiance of these mostly tiny places. It has been particularly nice to be able to hook up with Susan and Fred Morgan from Columbus who are both fighting the fight and making the best of what M. D. Anderson Cancer Center has to offer them, just like me.

Jill and I were in an elevator this morning at M.D.A. heading for a consultation with the anesthesia department in advance of my needle biopsy, which now is scheduled for Monday at 1 p.m. If everything goes according to plan, we’ll be leaving here on Tuesday headed back to God’s country.

I have really screwed this trip up, though. With the exception of Dr. Ken Ogan, who is the Emory Urologist who performed my robotic, laparoscopic nephrectomy in June of 2009, every doctor who has touched me has been a friend of mine. Some closer than others, but I have known them, played golf with them, ridden bikes with them, drunk beer with them. That makes for pretty casual meetings when we’re in their offices before or after a procedure. That luxury has yielded incredible results for us personally and medically. I have been well cared for.

I’ll just say, that “stuff” doesn’t play out here. For the most part, these doctors are the best of the best in the world. I went into our meeting with the surgeon, who is really the only person I absolutely wanted to see out here, with a bit too much of the same casual demeanor that I have come to expect in my doctors’ visits over the past three years. It didn’t go well. At all. I asked too many questions. Leading questions. He didn’t want to be led. At all.

I am going to do whatever I have to do to repair the damage I might have caused. This guy is a great surgeon. I’m sure there are others, but I don’t know them. I want Dr. Chris Wood to be my surgeon. I’m about to take a big gulp of humble pie, or whatever else I have to do to get things back on track. God, I miss Andy Pippas. Brilliant, kind, devoid-of-ego, mad scientist Dr. Andrew William Pippas. We’ve got some stuff to talk about the next time I see him.

So the biopsy will be done on Monday. It is almost certainly going to indicate a cancerous tumor on my left adrenal gland. Dr. Wood wants a six-month regimen of Sunitinib (Sutent). I haven’t discussed this with Dr. Pagliaro, my M. D. Anderson “team leader.” I think he’s going to be surprised that Dr. Wood doesn’t think an immediate surgery is what I need. I left my appointment with Dr. Pagliaro this past Monday thinking surgery was probably a slam dunk.

I do not want to take that drug, unless there is a clear, logical reason for me to do so. I’m not convinced that time is now. But what do I know? We’re only talking about my life.

Can of Whupass

Just got a call from my urologist Dr. Christopher Wood’s scheduling nurse. We are to report to the Interventional Radiology department at M. D. Anderson on the 4th floor of the Mays Clinic at 8:30 a.m. in the morning. This meeting is to get set up for a needle biopsy of the tumor in my left adrenal gland. That will be done on Wednesday, July 25.

That means we’ll be able to make our appointment with Dr. Lance Pagliaro, our genitourinary medical oncologist on Monday at 1 p.m. I’ve got some serious questions for him. The most important question is why the hell would he schedule a CT scan without contrast (in advance of a surgical consultation with a surgeon who said the scan was worthless to him to determine what he needed to see to do a surgery that would include finding out what is going on with Strainer).

I could have not been clearer when I stressed that the reason we came out here was to deal with the adrenal gland tumor AND TO FIND OUT WHAT IS HAPPENING WITH MY KIDNEY.  Yet, we were at this hospital until 10 p.m. on Tuesday evening and spent God only knows how much money for a scan that might as well have been done by our new cat and she doesn’t even need to be plugged in. This kind of stuff just makes me angry. Really angry. There will be a new can of whupass opened up on Monday afternoon.

Dr. Pagliaro is the one that is going to have to get sprayed with it. I’m choosing him, because no matter what happens he won’t be cutting me open. Plus, he is a wheel chair and if it turns into a race, I think I can win. (Grandin, is there some kind of a turbo thing that he might have on his chair that could take me in a race?)

As far as the cutting doctor, I plan to be nice to him.

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.