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.

 

Local Interventional Radiologists Deliver Minimally-Invasive Solutions

From the very beginning of my new normal, which began on June 11, 2009 when Dr. Ken Ogan used a DaVinci robot to surgically remove my diseased left kidney and 12 lymph nodes, I was left with an incurable case of renal cell carcinoma (RCC) and the stark realization that my job was to seek out the very best medical care I, with my great medical insurance and the shallow pockets of a small business owner, could afford. I had to use whatever medical wisdom was in existence to stay alive long enough to be strong enough to endure a more meaningful treatment if and when it came along.

To date, an initial occurrence and six separate subsequent battles with RCC mets have not managed to take me out and one of those “more meaningful treatments” was available to me locally and I have been fortunate enough to have been rendered NED (No Evidence of Disease) for the 7th time.

Here is a brief recap of the procedures (except for listing all CT/MRI scans, which have continued to occur at about 3 – 6 month intervals, depending on what was going on) and decisions we’ve made that got us to the office of Dr. Nishant DeQuadros:

June 11, 2009: Dr. Ken Ogan at Emory University Hospital performed radical left nephrectomy + 12 lymph nodes (1 positive for RCC).

August, 2009:  Started ASSURE clinical trial (Sutent/Nexavar/Placebo) and ultimately completed trial.

September, 2010: Discovered 2 cm tumor in spine at L-2, and was unblinded from placebo arm of clinical trial. Drawing the placebo arm of the trial turned out to be the good news, in that going forward I would be drug naive, allowing me more access to other therapies.

October 21, 2010: Biopsy of spine determined the lesion is metastatic RCC.

December 2, 2010: Stereotactic Radiosurgery (SRS) at Emory Midtown Hospital in Atlanta

March, 2010: Radiation oncologist says that I’m NED.

August, 2011: Medical oncologist says the tumor at L-2 wasn’t completely killed and it is growing again.

August 19, 2011: Lumbar fusion surgery and fixation with pedicle screws and fusion with bone morphogenic protein at L 1-3. Three weeks post surgery, developed severe (#10) back pain. Treated with time-released morphine and dilaudid for breakthrough pain. These weeks of pain and insomnia were the darkest days of my life. As I write this, I’m having trouble conjuring what the pain felt like. What it was like to be just aware enough to see the little hand of the clock find every click on its way around the dial, yet gladly not aware enough to be forced to remember some of the truly stupid television shows and movies I watched. Alone in a dark room with my ever-present plastic trash can, a box of tissues, a glass of water and a sack full of narcotics. The world looks very different from that room.

October 8, 2011: Some time before 5 a.m., I bent over to remove power plug from wall socket and experienced a dramatic loss of strength on my right side. I contacted my neurosurgeon, Dr. Michael Gorum, early Saturday morning. He instructed me to get to the emergency department immediately. His partner, Dr. Marc Goldman met me and we went immediately to surgery, where he performed a lumbar laminectomy (bilateral inferior L1, complete bilateral L2 and bilateral superior L3). Pain was immediately gone and according to physical therapist, the strength can be regained in legs with therapy. Two major spine surgeries within 8 weeks and a quickly-growing kidney cancer metastatic tumor trying its best to put me down.

October 10, 2011: I was moved by ambulance to the John B. Amos Cancer Center, where I was evaluated for stereotactic radiosurgery to attempt to kill the tumor in my back and returned to my room at the hospital. Got food poisoning (Yes, the day after my second back surgery in eight weeks! Can you believe it?) from a non-hospital meal I ate on Monday evening, so we delayed SRS until Thursday,

October 20, 2011: 16-greys of radiation in a single one-hour treatment aimed to kill the tumor in my spine.

October 26, 2011: Started monthly Xgeva injections to prevent further bone mets.

December 7, 2011: CT scans show NED.

March 15, 2012: CT scans show NED.

June 21, 2012: CT scan showed 3.9 cm tumor on left adrenal gland and slight enlargement of cyst in right kidney.

July 16, 2012: Decided to confer with specialists at M. D. Anderson in Houston, Tex. and met with genitourinary medical oncologist Dr. Lance Pagliaro there at M. D. Anderson.

July 17 – 18, 2012: Had bone scan, brain MRI, CT of chest, abdomen and pelvis with no contrast and a chest x-ray.

July 20, 2012: Met with interventional radiology to discuss needle biopsy of adrenal tumor.

July 25, 2012: Still at M. D. Anderson and needle biopsy of left adrenal tumor confirmed it was metastatic renal cell carcinoma.

September 3, 2012: Started HD-IL2 therapy at Duke University Hospital under care of Dr. Dan George and Dr. Michael Morse. Received 9 doses and creatinine spiked and didn’t come back to my baseline of 1.8, so I washed out. They wouldn’t allow me to finish part B of round one.

October 19, 2012: Had CT of chest, abdomen and pelvis W/O contrast, because of high creatinine.

October 26, 2012: Met with Dr. Pippas and found out adrenal tumor and nodules in kidney are stable. He recommends starting a TKI and plans to confer with Dr. George to determine which one they recommend.

November 13, 2012: Started with 800mg daily dose of Votrient. Took for 2 weeks and high blood pressure and other side effects caused oncologist to reduce daily dosage to 400mg. On 400mg dose for 3 weeks, increased to 600mg dose for 2 weeks and now on 800mg dose daily and dealing with side effects well.

July 11, 2013: CT scan of chest, abdomen and pelvis (W/O contrast) showed 90% reduction in adrenal tumor, no sign of two small right kidney lesions. Have lost 80 pounds due to GI complications with Votrient, but getting along fairly well. Have been able to stop taking Norvasc completely and have halved my daily Coreg dosage. Getting great blood pressure control, likely due to dramatic weight loss. Creatinine also looks good at about 1.5. So, might be able to get CT scans with contrast next time out.

November 1, 2013: CT scan with contrast of chest, abdomen and pelvis showed NED! Have lost 90 pounds due to GI complications of 800 daily mg of Votrient. Creatinine at 1.32 and other labs looks fantastic.

January 14, 2014: Have lost 100 pounds. Blood pressure is rising and with weight loss, this shouldn’t be the case. Hovering at around 180/115. So, went by to see Dr. Pippas to check blood pressure and they decided to triage me and work me in to see the doctor. Warned me that if I’m developing liver toxicity, we’ll have to make some changes. Had liver panel blood work done in lab. Dr. Pippas TOLD me to stop taking Votrient for 14 days and to take 20mg Prilosec every morning for next 14 days. Says he hopes my body will reset and that I can go back on Votrient after 2 weeks. Also, he added back 5mg of Norvasc to my daily meds to see if we can drive back the elevated blood pressure.

January 16, 2014: Got results of liver panel and we’re in normal range, so stopping I’m stopping Votrient for 14 days and taking Prilosec, carvedilol and Norvasc.

February 7, 2014: CT of chest, abdomen and pelvis shows completely stable and normal. Dr. Pippas says I’m NED again. Still tired, so he suggested I go back on nightly CPAP therapy and start some kind of exercise regimen. Also, wants me to maintain good immune system boosting diet and to not gain weight. At 155 pounds, about what I weighed when I left high school. Options presented to Jill and me:

A) stay off Votrient, scan every 3 months for a year
B) restart maintenance dose (either 200mg or 400mg) of Votrient

I asked Dr. Pippas to confer with Dr. Dan George at Duke, a colleague of his and someone who knows my case quite well. Also, I called Dena Battle, who knows this disease better than most doctors on the planet to ask her gut reaction to what doctor has advised. Made decision to stop taking Votrient.

July 22, 2014: CT scan with contrast shows 2.5cm metastasis on left adrenal. Same side as nephrectomy.

July 23, 2014: Discovered 2.5cm adrenal RCC metastasis and Dr. Pippas said surgery would be best option. We left the next day for a long weekend with friends in Destin, Fla.

August 6, 2014: Met with local surgeon Dr. Andy Roddenberry to discuss adrenalectomy procedure. Here’s an excerpt from my blog:

August 21, 2014: Excerpted blog post named “Eight Months:”  There is considerable scar tissue left over from the massive nephrectomy that cost me my left kidney, twelve lymph nodes and a lot of digging around looking for cancer. Additionally, the organs in my body have recognized that there is some stuff missing now that used to be there and they’ve wiggled around and taken up that space in my abdomen. So, scarring, colon, pancreas and a mass of arteries and veins are all congregated in that area, as well as a vascular renal cell tumor that is very much like a 2cm bubble of blood inside the thinnest tissue paper you can imagine. The surgery has been described to me like a person trying to pick up a balloon full of blood with razor sharp pins. One prick of that bubble and I’ve got cancer cells released all over my body and my prognosis suddenly would take a big turn for the worse.

We left Dr. Roddenberry’s office feeling the dread of making a decision to opt for a surgery that, even if successful, would really take me down physically and could significantly compromise my immune system. This is where the story gets really interesting, if you believe in karma. If you believe in a god, or if you worship from the torn front seat of a 1960 rusted, formerly white Chevrolet pickup at the 2nd Dirt Road Church of What’s Happening Now — this was the perfect information for me to hear at exactly the right time….

My friend, Dr. Granville Batte, called me and suggested we might want to meet with new Interventional Radiologist Dr. Nishant DeQuadros. That contact from a friend helped us find clarity. I promise you this: If you are a cancer patient who doesn’t have full faith in your doctor, and/or if you can’t see your a clear view of your feet along the path you have chosen, you are surely miserable. It is bad enough to feel bad, but to feel bad and be weighted down by stress related to your treatments makes the journey that much more difficult.

Here’s what I did to find that sweet spot of clarity before a new therapy: We made an appointment to meet Nishant DeQuadros and my work began. My doctors are my business partners. They provide a service that determines what is wrong with me and the crystal-clear vision backed up with the talent, experience and will to deliver a treatment path that will, at the very least cripple and at the very best in my case, completely shut down the disease process. I, and my insurance company pay them, their professional assistants and clinicians, staffs, technicians, labs, bean counters and hospitals. Then, the real work starts — research.

I fill whatever amount of time I can carve out prior to the first meeting with a new doctor with finding out everything I can about them. Where they’re from. Where they went to school. I seek out their professional writings, look for any feedback I can get from ratings sites, inquire of them with every one of my trusted medical sources and see if they have any kind of social media paper trail I can follow. I also like to find out who their friends are and if I happen to know them, I can’t pick our mutual friends’ brains to find out if they would put their life in the hands of this doctor. Melissa and Jim Thomas are friends of the DeQuadroses. That was a great thing to hear, right at the start.

I got a sweet surprise when I started vetting Dr. Nishant DeQuadros. The more I learned about him and his company, Georgia Radiology Imaging Consultants, the more excited I got. The doctors in this practice are extremely well trained. They do the kinds of procedures that are hard to come by in a community hospital setting. Often these highly-specialized radiologists are doing these kinds of procedures in larger urban or university hospitals. I found out later, just how important it was that these superdocs were here and that one of them was able to take my case.

Jill and I walked into Dr. DeQuadros’ office and a young, handsome guy in a white coat greeted us. We sat down, looked at my scans and we talked about how the ablation would be done. He brings mad experience to the table. At the end of that visit, we had that clarity that is so important.

August 28, 2014:  Interventional Radiologist Dr. DeQuadros and Anesthesiologist Dr. Mark Pinosky performed a microwave ablation of my left adrenal and its encapsulated RCC met. Complications during procedure caused Dr. DeQuadros to have to make four passes to get enough of a burn to completely finish the job. Disruption of my adrenal gland and the presence of the RCC metastasis caused a 300/200 blood pressure spike during the procedure. Because of the fear of cardiac damage from the BP spike, I spent the night in an intensive care room, so I could be monitored.

In my intensive care room the next morning after the procedure, I learned how serious the situation became during the minimally invasive operation. When they saw that I was having a major hypertensive reaction, Dr. DeQuadros ran a central line to my heart from behind me left knee, and, along with Dr. Pinosky, they monitored my blood pressure with every beat of my heart, utilizing drugs and procedures they had at their disposal to control wild blood pressure swings while still completing the procedure.

August 29, 2014: I was released with an appointment to see Dr. Shane Darrah to determine whether the high blood pressure had damaged my heart muscle.

September, 4, 2014: Saw Dr. Darrah and had stress test.

September 8, 2014: Had echocardiagram in Dr. Darrah’s office. It was determined that no heart damage resulted from blood pressure spike during microwave ablation.

October 2, 2014: CT scan with contrast (80% of dose). Still NED.

February 12, 2015: CT scan with contrast (80% of dose). Still NED.

The microwave ablation therapy I received here in Columbus was one of those cutting-edge treatments that can extend the life and protect the quality of life of a patient. In this process, I appreciated the candid advice given to me from Dr. Roddenberry that I should seek another, less invasive option that wouldn’t expose me to such a large, dangerous surgery that might negatively impact my compromised immune system. The incredible truth is that the huge surgery and the minimally-invasive microwave ablation should yield the same results (if perfectly executed). One would have cost me six days in the hospital and another six weeks of recovery. The other was performed on a Thursday and I was back in the office on Tuesday. I would have returned to work on Monday, had it not been the Labor Day holiday.

The list of vascular and interventional radiology treatments that are offered here by Drs. DeQuadros, Hart and Vo is quite long. If you receive a diagnosis that might be remedied by one of the treatments from this list like I did, you’d be wise to do a little Googleing to see if you might be better served by this type of care. Here’s the best part: When the therapy is finished, you can go home and sleep in your own bed. That is a mighty good thing.

New Appreciation for the Microwave

Please accept my apology for leaving you all hanging. The pressures of helping to run a business, keeping up with all of the landscaping I’m responsible for (especially with diminished physical capability) and the sheer joy of returning to life have had me blocked beyond belief. Under normal circumstances, my brain lights up when I touch the keys on my MacBook Pro. Much like me, my “S” key is beginning to show some wear. Am I living my life too safely? Command-S is the keyboard command to save. Caution has been at the very front of my consciousness AC. After Cancer.

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In the last post I described the adrenal microwave ablation procedure performed by Dr. Nishant DeQuadros and his team and anesthesiologist, Dr. Mark Pinosky. In order to assure us that no heart muscle damage or other cardiac damage had occurred with the 300/200 blood pressure spike during the procedure, Dr. DeQuadros ordered a full cardiac workup. Echocardiogram, treadmill test and lab reports later, the good news is that I suffered no damage from the spike in blood pressure.

So, all that was left was a follow up scan called an arterial phase CT scan with contrast. I had that scan done last Thursday, October 2 and was happy to have been able to have an immediate consultation with Dr. DeQuadros after the scan.

During that meeting he told us that he was looking for a short list of things (margin around tumor and adrenal gland, margin around pancreas and color (degree of dark shading) of fat layer around the site of the ablation) that would indicate how successful the procedure had been. He scored a trifecta with excellent skills, a great team and an anesthesiologist who reached for and got his hands on exactly the right mix of medications and mad skills to keep me from either cardiac arrest or stroke while the procedure was being completed under very scary and trying circumstances.

The tumor appears to be dead. The adrenal gland has been banished to a growing ash heap of my internal organs. Pitched into the black ether of my insides. A perfect gut shot, suitable for TV replay on The Medical Channel (if there is such a thing). My joints ache. I don’t move as well as I used to. My hair appears to be holding on, but irrevocably grey. Parts of my feet are numb. I get completely freaked out sometimes by a phantom pain, worrying that something is knocking on my cancer door again.

In spite of all this stuff, I could be arguably NED again, for more times now than I can remember. If I could live with all of these and maybe even a few more encumbrances for another 30 years, I’d take it and run! Chances are, we haven’t seen the last of this ugly disease. I’m ready for the son of a bitch, if it decides to come at me again.

Meanwhile, I will get to witness the marriage of our eldest son on October 25, wish my father a happy birthday on October 23 and get tuned up for my favorite holiday when we host another Thanksgiving Day dinner. With just a few modifications, life could really be good for us next year.

Microwave Ablation Completed Despite Blood Pressure Spike

Heartbeat ECG. Volumetric concept. VectorI have two new best friends as of this past Thursday. Dr. Nishant DeQuadros and Dr. Mark Pinosky.

Nishant is an interventional radiologist. He’s young, engaging, handsome, articulate and well trained. Here’s where he was trained:

Henry Ford Hospital/Wayne State University
Residency, Radiology, 2006–2011

Brown University
Fellowship, Vascular and Interventional Radiology, 2011–2012

Case Western Reserve University School of Medicine
Class of 2006

Mark is an anesthesiologist. I took an instant liking to him as he talked. He seemed focused and knowledgeable and because he is chief of the anesthesia group at Columbus Regional Health and is responsible for several offices in other states. He spent quite a bit of time with me before the procedure I had on Thursday morning, explaining what types of things they’re preparing for in a microwave ablation of a renal cell tumor in my left adrenal gland. He is board certified and licensed in several states. Here’s where he was trained:

Medical University of South Carolina
Class of 1989

Internship and Residency
Georgetown University Hospital

Thank God in heaven that my world intersected with these great doctors at just the right time. If not for them by my side on my case Thursday morning things would be very different in my world today. If I had a world at all.

Let me take you back through our decisions that led us to deciding to undergo microwave ablation to remove the renal cell metastasis in my left adrenal gland this past Thursday: My CT scan from July 22 showed that a tumor in my left adrenal gland had started growing again 23 months after I started a drug, Votrient, that kept the tumor at bay. I took the terrible drug for 15 months and stopped it in January of this year, after it became apparent that the drug might kill me. It robbed me of my dark hair, 100 pounds of my flesh, my taste buds, my favorable vomit streak and visited upon me some other even more awful things that I’ll spare you from reading.

Dr. Pippas said at the meeting after the scan that he felt a surgical option might be the route we should take. I visited with Dr. Andy Roddenberry at St. Francis Hospital and he gave us a good understanding of how serious this surgery would be: Open incision of 10″, 6 days in the hospital and a full six weeks of recovery. A lot of pain and a real solid blow to my already compromised immune system.

A few days later, after a lot of thought, Andy Pippas called me on the phone and said he had a change of heart about the direction he had advised me to take. He felt that a big surgery shouldn’t be done at this point. It was better to find a less invasive procedure that could take out the tumor, not negatively affect my immune system and still leave us with surgery as a next step if we needed it later.

About that same time, Dr. Granville Batte called me and told me about Dr. DeQuadros and his skills as an interventional radiologist. All my research told me that this young doctor had the chops to do this procedure. That he was highly skilled and he was the right person to choose to do the procedure. We went to see him and Jill and I both felt like I was in good hands with him. So we scheduled the procedure for Thursday, August 28 at Midtown Medical Center.

I had never met Mark Pinosky until Thursday morning, when he appeared at my bedside to discuss my case prior to surgery. I’m thankful he was there and all his excellent training was brought to bear to save my life when my adrenal gland sent my blood pressure into the stratosphere right in the middle of the ablation procedure.

The CT-guided microwave ablation takes place in a CT suite, not in a surgical suite. I was placed face down in the CT machine and Dr. DeQuadros used the CT to guide a needle-like probe into the tumor. In a discussion on Friday morning in his follow up visit after the procedure, he told me that he needed a four-minute burn to kill the tumor. He said he inserted the probe into the adrenal gland and started the burn.

My adrenal gland did what it does and ramped up my blood pressure and the procedure had to be stopped multiple times while efforts were underway to drive my blood pressure down. Dr. DeQuadros ran a central line into a vessel behind my knee that gave them beat by beat access to my heart.

They were able to deal with blood pressures that went as high as 300/200, the corresponding bottoms that would have followed with the introduction of powerful drugs to drive my blood pressure down, and still get the procedure completed. Both of these great doctors have promised me some time to talk about the procedure for inclusion in this blog. I want to be sure to capture my thoughts and the thoughts of the doctors about this promising minimally-invasive way to deal with RCC mets in the adrenal gland.

I’m writing this from memory and from audio recordings of my talk with doctors after the procedure, so I’ll likely revisit this after I have a clearer view of how the procedure unfolded. But, regardless of my description, the medical talent with me in that room on Thursday was brought to bear on a difficult situation to what will likely be a good outcome. So thankful to my God, my medical team, my family and my prayer warriors.

Needless to say, I’ll be in my pew this morning at St. Matthews in-the-Pines Episcopal Church. I have much to be thankful for. Please excuse this rambling post. I wanted to get something out and I don’t think I’ve been as articulate as I try to be in this space. Just wanted everyone to know that I’m OK and hopeful about what lies ahead.

 

Votrient is Doing the Job

Four and a half years ago, I received a dire diagnosis. Renal cell carcinoma. Kidney cancer. I opened my internet browser and found out just how dire — I had a five percent chance of being alive in five years. I saw my life pass before my eyes. My beautiful sons. My parents, my friends, my pets. Oh God, my sweet Jill. I didn’t want to leave them. How would I ever start the process of dying? When someone tells you that death has come knocking, you just never know how you’ll react. Much like, I’m sure, that warrior’s realization that the only thing between them and an angry enemy is the grit and determination they can conjure as they plan their attack. I’ll admit, I didn’t know what the hell to do. So, I did the only thing I knew how to do. I wrote — a lot. Prior to this post, the words I’ve written and those that have been written back to me fill up over 400 8.5″ by 11″ single-spaced pages! I was, and continue to be, scared to death.

At my first visit with local hematologist/medical oncologist, Dr. Andrew Pippas at the John B. Amos Cancer Center, he cautioned me to be aware that the internet would likely deliver an outdated view of my prognosis. He assured me that there were new drugs coming online and he looked right into my eyes and said, “You’re not going to die any time soon.”

Since that office visit well over four years ago, Dr. Pippas and I have had many ups and downs. We have argued. I have even refused at least one treatment course he wanted me to begin. Our relationship has been one of give and take. Despite any differences we’ve had, what Dr. Pippas has never wavered from, is his position as the most solid, wonderful leader of my medical team. We’ve sought opinions from the best RCC doctors on the planet in New York City, at Duke University Hospital in North Carolina and at cancer mecca, M. D. Anderson Cancer Center in Houston, Tex. I have also relied on the testimony from a cadre of RCC patients, some of whom are still alive and others who have, despite the best efforts of the best doctors in the country, have gone on to their greater rewards and have left pain and suffering as well as their loving friends and families behind.

Those of you who are regular readers of this blog know that if I am posting, I am likely in a frightened state. That I have not posted much lately is a sign of good things in our lives. Yes, I’ve lost 90 pounds. That is good. Good for Strainer, my remaining kidney. Good for my body’s processes. Great for my creatinine level. Great for my blood pressure. Great for Chancellor’s Mens Store, because not a single item of clothing I own, including shoes, underwear, pants and shirts fit me. Only my socks and hats fit me. I have managed to cobble together a manageable skinny wardrobe that I am not embarrassed to be seen in out on the street, gratefully discovering that really expensive “stretchy” jeans are now a luxury that I will never be without.

So, the good news is that this cancer, for the moment, is not trying to kill me. Sadly though, the Votrient that I’m taking 800 mgs. a day of, is whipping my ass. Votrient has taken the pigment from my hair. All of it. Votrient has given me chronic, daily diarrhea. Votrient makes me throw up. Out of the blue and without much warning. In addition to the original site of this cancer in my left kidney and in at least one lymph node near that kidney, I have endured metastases in my spine at L2. Two back surgeries, two rounds of stereotactic radiosurgery (radiation) have beaten those metastases back.

Last year, doctors discovered other mets in my left adrenal gland and possibly in my right kidney. The Votrient was begun, according to superstar surgeon, Dr. Christopher Wood at M. D. Anderson, to “see if it will make these tumors smaller in advance of another surgery to remove the adrenal gland.” That was a year ago. Despite making me skinny, washed out and pale and always in a gastrointestinal turmoil, I found out yesterday that Votrient is working for me. When I say “working,” I mean working like a son of a bitch! After reading my scans yesterday, Dr. Pippas told me that my tumors are gone. I am by no means cured. But what I am is alive, still among my loved ones and fairly well able to enjoy life. I’ll take that for now.

I am still in research mode. There is a new clinical trial at Johns Hopkins in Baltimore that delivers a combination of two new drugs and it is showing mind-blowing response rates among RCC patients. The bad news is that the tumors will have to return in order for me to qualify to enter that trial. With cancer, there is always bad news sprinkled in the with little good news you hear. I’ll keep looking for that magic bullet. I’ll keep taking Votrient. I’ll keep loving my awesome family. I’ll keep hugging my pets. I’ll continue to bathe in the gentle love coming from our huge cadre of friends.

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