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!

 

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.

At the Fulcrum

Today is the first day of spring, 2012. As the pollen falls and bursting buds imbue the world with color and fragrance, I’m contemplating my future. This is day two of my latest round of scans, the windows into my body and the prognosticators of my chances for survival.

One hour in a clacking, thumping, thrumming MRI machine. One hour, in between bags of fluids force fed into my vein, and then the wait. I think Dr. Mike Gorum, one of my neurosurgeon spinal structural engineers,  is as anxious as I am to see this round of scans. If Mike and John Cabelka have killed this tumor, I have a great chance to live with this cancer diagnosis. If the tumor is still growing, my chances for a good quality of life for the remainder of my life are slim.

The scans today are going to tell that tale. I want to see the end of that tale. If my life was a book, I’d flip over to the end to see how the next few months are going to play out. I plan on this first day of this spring being the first day of my life’s spring. The good news that I’ll get today, or some day soon, will be the bellwether of just how far into the future I’m going to be allowed to get.

I’m not afraid. I feel like the bumper sticker I’ve seen on trucks driven by obvious rednecks: “I ain’t skeered!” I was talking to a cancer “sister” the other day, extolling the virtues of a small dose of an antidepressant — in my case, Celexa — as a vital part of living with cancer. Without noticeable side effects, my edges are rounded. I can walk straight toward this thing that is trying to kill me without fear or trepidation. People tell me I’m brave. They say I’m a shining example of how to live with cancer. I’m just being the only way I know how to be. I think Dr. Pippas’ urging me to take the Celexa has been so important in my overall comfort, despite my awareness that there are malevolent forces at work inside me.

The love of a good wife and good sons and the arms of my community enfold me as I watch the liquid drip into my arm and contemplate the walk down the hall to be slid into that tube of medical magic. Please pray for good news for us today. I have the feeling that this day is my life as a balanced apothecary scale. The right news today would slip enough weight into the “Good” side to tip me toward good life.

It is so good to feel like writing again. Thanks for going with me.

The Price of Poker is Going Up

I didn’t sleep much last night. The last time I looked at the clock, the green digital numbers read 3:45 a.m. I was grinding on the realization that my 8:15 appointment (only 8-, then 7-, then 6-, then 4-and-change-hours away) would tell the story about whether or not the stereotactic radiosurgery had put a proper killing on the tumor in my spine. I thought I’d leave Dr. Pippas’ office this morning with that knowledge in hand.

I didn’t.

I did leave with a little bit of good news, though. The cancer doesn’t appear to be anywhere else in my body. It is localized to the place in my spine that has been biopsied twice (a week apart), operated on twice (eight weeks apart) and blasted with 32 grays of radiation (two treatments, nine months apart). My spine, though ravaged by surgery and radiation, is in a much better place than it was in just a few weeks ago when my spinal cord was being encroached upon by the tumor.

That is where the good news ends.

The tumor may not be dead. And, if it isn’t, Dr. Pippas thinks I may have reached the limit of how much treatment trauma (surgery and/or radiation) I can successfully stand in that spot. I haven’t had this conversation with my neurosurgeon or my radiation oncologist and I will do that. Before I address this any further, I’ll have those conversations. I’ll say at this point that my options appear to be narrowing. This tumor needs to go.

I need systemic therapy. The kind of therapy that courses through a body and kills cancer cells where they are — one by one, if that’s the way they come. I have sent the latest CT scan and yesterday’s MRIs of my lumbar spine and thoracic region to Dr. Janice Dutcher and Dr. Dan George for their review. We hope to be able to get a consultation with both of these fine physicians by the end of December and get scheduled for the HDIL-2 therapy as soon in January as possible.

HDIL-2 is the beast I’ve been reading about almost since the day of my diagnosis in May, 2009. I have read volumes about how the therapy is administered and hear dozens of first-person accounts of the actual treatment from members of the kidney cancer forum on acor.org. There is an 15% – 20% chance of a cure for people with clear cell kidney cancer. I want to be one of those people. I’m counting on being one of them.

Dr. Pippas, Jill and I talked this morning about the decisions we’ve made over the last two and a half years since I was diagnosed. I’m confident that we’ve made great choices. I’m at peace with all of the decisions we’ve made that, at the time, seemed like we were having to cut the baby in half. Right now, we’re standing at another crossroads. An important one.

Beginning with this next therapy, the price of poker is going up. Each one of the available therapies we try ticks off, one-by-one, the few available options we have to try. My hope is that I’ll only have to check off one of those boxes and it is the one that gives me a durable cure. Unfortunately, HDIL-2 is the only one that can do that. If it fails, then I’m on a train with no brakes going downhill with only pinestraw bales to stop me. Targeted therapies, tyrosine kinase inhibitors, vascular epithelial growth factor (VEGF) inhibitors are only band-aids that can’t cure me, but can lengthen my life until they stop working — and they will stop working.

So, this is why the HDIL-2 therapy is so important. It is the big arrow in my quiver and I’m ready to draw it back and let it fly.

I’ve done all I can do today. No sense in worrying about what I can’t control. Tonight, I hope I’ll sleep.

 

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!