Columbus and the Valley

The Day My Tears Came Back

In an effort to continue to drop digital insight (for my brothers and sisters in the kidney cancer club) about my methodical return from the pits of hell, there is more to report. All of it is good. We spent a nice, long doctor visit yesterday with Dr. Raj Alappan, my nephrologist. Strainer (for those who don’t know, my remaining kidney, which was named in an online contest on my blog) continues to improve. All my numbers relating to GFR, glomerular filtration rate; creatinine; blood pressure; A1C and all other issues with Strainer are either stable, improved or in the case of one important indicator, dramatically improved. Those visits with doctors to receive results from labs, scans or tests are full of tension that just takes a while to slough off.

Yesterday was a good day.

A little over a month ago, I mentioned that I intended to wean myself off the 20mg of Celexa I have been taking daily for almost six years. So it began — I took 10mg for two weeks and 5mg for two weeks and I was free of any daily dose six days ago. I can testify about newly-found clarity, sharpening senses, a greater enjoyment of my work and the ability to feel, without those feelings being filtered through a Celexa scrim.

The returning ability to take a full-frontal emotion head-on was tested today. I continue to get comments every day about my blog post “Sad Display of Bullying at Last Night’s MCSD Board Meeting.” During my conversation with every single one of these folks, I have asked them if they’ve ever been bullied. The ones who have, get a certain look in their eye. The become smaller. They still feel the sting of the encounter, even if it happened a long time ago. Even if it happened in 1958 in the bathroom of East Highlands Elementary School. I grew up on 20th Street, in East Highlands, until my maternal grandparents were both killed in a car crash near Chattsworth, Ga. My family moved into their home on Britt David Road, in front of the Columbus Metropolitan Airport, where my parents still live.

I will never forget the sound of that door being slammed open against the wall and how  my kindergarten five-year-old self felt when I was confronted by a covey of sweaty sixth graders. They pushed me around. They threatened me. They frightened me. My recollection of the incident included somehow having my mom come to school to discuss what I had been through. She’ll likely weigh in on her remembrance, if that story was even worthy of being remembered. Telling the story now makes me sound like a little sniveling wimp but I won’t forget it as long as I have a memory.

An aside: Monday, September 14 at 6 p.m. will be the next regularly scheduled MCSD board meeting. That will be a great opportunity for you to go to a board meeting and show your support for our board, Superintendent Dr. David Lewis, his cabinet and all the educators and employees of our public school system. 

Today at my Wednesday Rotary Club of Columbus meeting, the Muscogee Educational Excellence Foundation (MEEF) Teacher of the Year Sheryl Green was our speaker. Her well-written, emotional, powerfully delivered speech was one of the best Rotary speeches of my 18 years of Rotary. Most of the people at my table wiped up tears, as Sheryl talked about her Jordan High School misfit soccer team. Her stories were tear jerkers, full of the love of a great educator and broken, hard young students, many of whom didn’t hear the words, “I love you.” Ever.

Except when their coach look them in their eyes and told them just that. “I love you.” Some responded and others turned a deaf ear because they weren’t taught how to hear and accept those words.

I didn’t know what to do about myself with tears coming out of all four corners of my eyes. If you get the chance to hear or read Sheryl Green (she has a column every Wednesday in the Columbus Ledger-Enquirer), run toward her. She has a powerful story to tell and she is damn good at telling it.

Back at the office after Rotary, I took a look at my Facebook account and saw a request for prayers for Shannon Burgess, the daughter of a childhood friend of mine, Linda Parks Smith. Shannon is out at M. D. Anderson Cancer Center in Houston, Tex. in the fight of her life. I touched my keyboard and felt the tears flow for the second time today. I wanted Linda and Shannon to know that I was sending my love to them as only a survivor can experience and give. Something about talking to others in a cancer fight makes my memories rise up. I feel so connected to them and so many others who are in all the stages of cancer from recently-diagnosed to tough battle scarred cancer veterans. Sliding back into a conversation that dredged up some of the bad times was a deeply emotional experience for me today. Please remember Shannon and Linda and their families in your prayers. They need them right now.

The tears got next to me. Enough to wonder if I’m emotionally stable enough to do without the medicine. I suspect all cancer survivors are left with their own demons to deal with. Mine were a healthy depth from the surface, in light of the exceedingly tender subjects that I have been a part of seeing, hearing and experiencing today.

Today was a good day.

 

Belgian Bike Race

At the moment that Dr. Andrew Pippas, morphed from being my friend to becoming my medical oncologist, I already knew several things about him. I first met him in his cramped little office across the street from Doctors Hospital, well in advance of the construction of the John B. Amos Cancer Center.

I was there to welcome him to town. Our conversation drifted to men’s clothing. I recommended Chancellor’s as a good place to go. We talked about his family and that he had just arrived here from Lakeland, Fla. I found him to be quick-witted, very intelligent and he seemed to always order his thoughts before he opened his mouth to speak. Over the years I’ve know him, he’d occasionally disappear from the small space his body occupies and appears to be lost in thought, pondering some angle, some formula or another way to get at something on which he’s been working. Like a well-dressed mad scientist in a bow tie, he leaves no stone unturned in his quest to heal those of us sick people who are glad to be in his care.

These few days since my last posting on this blog have found me on a soul-wrenching journey. Our lives have gone on: doctor visits, dinners with family and friends, quiet conversations with family, the business of running two print magazines while launching three digital versions of both of them, church (although I skipped today to have some quiet time just for myself), board work, tractor time, an event with my parents — all against the ever present backdrop of cancer and a big decision that needs to be made.

As you know, Jill and I just returned from an 11-day journey out to Houston, Tex. to the M. D. Anderson Cancer Center. Out there we found out a couple of things we already knew and one thing we were surprised to hear. The cancer that has invaded my body is trying to kill me, but thankfully it has brought a slingshot to the gun fight. But instead of the one tumor that we knew I had on my left adrenal gland, we found out that I have two more small ones in the upper pole of Strainer, my right and only kidney.

There is a surgical option that should be exercised after a period of systemic treatment. I have always been told by Dr. Pippas and other medical oncologists whose opinions we’ve sought: “Treat a local problem with a local treatment. Treat a systemic problem with systemic therapy.” We’ve got a systemic situation now, and although surgery is still on the table, we need to blast my system with cancer-killing therapy to beat down what is there and destroy any cells that may be trying to get a toe hold someplace else.

TKIs and anti-angoiogenic drugs are the chosen systemic route these days for clear cell kidney cancer because they can shrink tumors and lessen a patient’s tumor burden in advance of surgery. I believe there are 7 of them: sunitinib (Sutent), pazopanib (Votrient), everolimus (Affinitor), axitinib (Inlyta), sorafinib (Nexavar), temsirolimus (Torisel) and bevasizumab (Avastin). These drugs have two things in common: their toxicities are legendary and they cannot cure kidney cancer. The 8th approved therapy is called Aldesleukin (IL-2). It has one thing in common with the other seven: its toxicities are legendary. AND, +/- 7% to 10% of the time, it can also cure (provide a durable, lasting remission from) kidney cancer.

If you search HDIL-2 on this blog, I’m sure you’ll find a double handful of references and the discussion that if this cancer forces me to a systemic therapy, high-dose interleukin-2 will be the one I choose. I know that I’ll be walking unarmed and naked into a wall of flames, but I’ll be walking toward the only thing that can give me my life back and provide a tiny hope for my greatest wishes: to live to be old with Jill Tigner, to see our sons happily married and to hold a lapful of grandchildren.

Andy Pippas called me this afternoon and we talked about things. The bottom line: I am not going to dick around with a drug that has not got a chance to cure me. Not now, anyway. I may have to take one of these 7 drugs some day in advance of another surgery. But, I may be one of the 7 percenters, who can get enough remaining life out of HDIL-2 to ether be done with this shit or to live long enough for something more profound to come along.

So, I sent Dr. Dan George an email today and asked him to make a place for us at Duke University Hospital in his world-class HDIL-2 treatment program. My hair is on fire, my eyes are red, I’m locked and loaded and I’m going in. Unless something in my scans or labs makes me ineligible for this treatment, we’re choosing to ride the only horse that can take us all the way to the finish line.

This decision had been difficult to make and has taken days of discussion with Jill and many emails with the doctors who are involved with my case. I am tired of thinking about it now. We know what we’re going to do and we’re ready to get about it. Here is some information on Aldesleukin if you need some specific things to pray for on our behalf. This is going to be worse than 100 miles of cobblestones in a Belgian bike race. But, with enough people cheering us on, we’ll get through it.

I’ll post here when I hear from Dr. George. Please keep us in your prayers.

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!

 

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.