Columbus and the Valley

Life, As I Know It, Is About To Change

When you have a relatively rare disease, the size of your network is of the utmost importance. Renal cell carcinoma is a rare cancer and a top medical oncologist in a community clinic setting like we have here in Columbus might see less than 10 cases of RCC per year. I just hung up from a 20-minute telephone conversation with Dr. Michael Kaehler, an RCC specialist in Munich, Germany who sees over a thousand cases of RCC every year. Dena Battle, president of KCCure, a recently launched national kidney cancer foundation with a goal of promoting research and patient care for those of us with this disease, was able to get Dr. Kaehler to convene a group of neurosurgeons and radiation oncologists in Munich to review my case.

My phone conversation with him this morning was both exciting and terrifying. The most terrifying thing I learned is that this tumor is considerably larger than we had thought. At over 10 centimeters in length, it spans my spine at L1-L3 and it is growing around my spinal nerves. More toward the exciting end of the informational spectrum is finding out that although my back is literally against the wall, there is hope for me. He sees a combination of surgery and Cyberknife (radiation) that can be brought to bear to keep the tumor in check and keep my “tumor burden” in a manageable state over time.

The first order of business for me is that I have to begin taking another TKI (tyrosine kinase inhibitor) drug (oral chemotherapy). I was a strong responder to Votrient, the drug that turned my hair white and caused me to lose 100 pounds, but it also shrunk the tumors in my spine and in my adrenal gland. IF (and this is a big if) Cabozantinib, the new drug I’ll be taking shrinks my spinal tumor, we’ll attempt to keep it at bay by using a combination of surgery and Cyberknife to keep it in check. At some point, if the tumor continues to encroach upon my spinal nerves, then I’ll have to have a surgery called a dorsal vertebrectomy to give my spinal nerves more room through my spinal canal.

Knowing what I know about what life is like while taking a TKI drug, I’m going to eat everything that I love over the next few days, because once the drug takes hold of me, my tongue will be turned into a one-trick pony and will only taste aluminum. Everything from my heavenly lasagne to a big juicy medium rare steak will only have one taste — aluminum. I will be nauseated and will experience diarrhea on a daily basis and it will take every bit of restraint I have to be fun to be around. That is my goal, however, because I believe that my attitude has contributed mightily to the fact that I’m still alive. Attitude, along with a loving God, loyal friends, an incredible family and a mountain of prayers.

The rest of my life, however long it turns out to be, will be a study in divine intervention, medical science and perseverance. The only part of this I can control is the perseverance, and making sure I am able to be seen by doctors who know my condition and have the mad skills to attempt to defeat it, regardless of where in the world we have to go to see them. I don’t know how we’ll afford all of this. We have great insurance, but insurance doesn’t cover trips to Germany, if we end up having to go there. We’ve made it this far, with our small business resources and faith. I don’t expect that to change going forward.

 

Drug Side Effects Still Taking a Toll

On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!

Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.

We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced  /f?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.

Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.

Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.

So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.

The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.

 

Mr. Herlihy

Let’s break it all down…down…..down (think echo, here). I’m speaking to you right now from the bottom of a single, deep, oddly-misshapen taste bud from one side or the other of my tongue. The soft, shiny tissue looks innocent enough from this close proximity, but we all know there’s lightening waitin’ to be unleashed if that fat old man takes a shine to dressing somebody down.

During a short nap, I had this snippet of a dream. I have this similar dream when I get into a rare dream state and I’m not feeling well. I am always a minimized version of myself, left to look up at a Texas-sized lanscape. Cancer makes me feel small, especially that I’m having such a difficult time doing any damn thing. My joints, by God, hurt! I know I’m a tough guy, but living through 40 months in some sort of daily measurable physical pain really does wear on a body.

The odd dreams in naps notwithstanding, my whole body is a mess right now. I can’t taste anything specific. I, in fact, can taste everything and everything tastes like everything else. Sweet. There is no savory for me at the present. Salt is sweet. Chocolate is even sweeter, but in a weird off-putting way. For a guy who can taste the razor-thin nuances between different types of grassy flavors in a sauvignon blanc, being sentenced to a one-taste-fits-all universally bland sweet flavor profile is pretty much awful.

As you know, I haven’t posted in a while, and I’m sorry about that. I have been nauseated almost constantly since I started on the 800mg dose of Votrient, a powerful tyrosine kinase inhibitor (oral chemotherapy) drug I have been taking since Tuesday, November 13.

I went to see my primary medical oncologist, Dr. Andrew Pippas, on Thursday, November 29 for a follow up visit to see how I was taking to the new medication. Andy reached over and unwrapped a tongue depressor and looked back in my direction. “I don’t think that’s a very good idea,” I said. “If you’re having a burning sensation in your mouth, I need to see what is going on,” he said.

“Then you had better give me a barf bag,” I said. I palmed the barf bag and he went in. I felt like Mr. Ed for a short while.  Dr. P was on the fringes. “Well, your teeth look great,” he said as he rolled my tongue around, dangerously near my very shallow vomit trigger.

Then he went deep, and so did I. After about ten minutes of hurling, we were able to resume our conversation. He looked at me with compassion, even though he was easily  the cause of my having to add yet another tick mark to my ridiculously short vomit streak. A good vomit streak (or the lack of vomiting for a time, technically) is hard to come by when cancer is in your life.

At the end of that appointment, Dr. Pippas cut my daily 800mg dosage of Votrient in half, with the intention of ramping me back up to the full dosage over some period of time if my body will adjust. In addition to the all-encompassing nausea, fatigue was a major side effect at the full dosage. I slept a lot, long nights and naps during the day and still awakened feeling like I could just curl back up and sleep some more. People say to listen to your body. Mine was telling me to sleep. So that is what I did.

So, with Dr. Pippas telling me to skip the entire dose on the 29th and to begin on November 30 with a 400mg dose, I am now six days into the reduced dosage. Yes, I feel more like myself. Yes, I’m able to hold food down. Yes, my tongue feels more like a tongue than a studded, metal hacky sack.

But, it is still a daily struggle, mainly with my not feeling like doing much. Sadly, one of the the things that I just not felt like doing is writing. I know that I have a huge, loyal following of this blog and those people want to know what is going on with me. I have commiserated with others who are on some kind of medical journey and who also blog about the struggle between just getting some information out and being able to write something you feel good about people reading. Something you’d be proud of, so to speak. Too many times I’ve had to just sit down and take that journalistic dose of castor oil and bang something out when I had much rather be entranced with some piece of good music and have my heart flow through my fingers as they dance across my MacBook Pro’s keyboard. Lately there has been too much “castor oil” gagging and not enough flowing.

Maybe this downward dosing (which I just confirmed on the phone with Dr. Pippas’ office will be in place until at least Dec. 27, when we return to see him) will allow me to extend my vomit streak through the Christmas holiday. Then we’ll look toward the new year (my 60th) with an idea of how to proceed.

With the ramping down of nausea, I’m hoping for a ramping up of blog activity. If that turns out to be, then there’ll be more to follow. In the meantime, I hope you had a great Thanksgiving and are thick into the planning for your Christmas holiday. Merry Christmas, Mr. Herlihy!

See you soon!

Side Effects

With my 800mg dose today, I’m five days into my first month of oral tyrosine kinase inhibitor, Votrient. Thursday afternoon, I was driving down the road near the John B. Amos Cancer Center and because I just didn’t feel right, I whipped in to see if I could get someone to check my blood pressure.

199/95…..uh oh!

Nurse Tammy delivered this reading to Dr. Pippas and he wanted to see me. Hypertension is a common side effect of Votrient. But with one kidney, I can’t really afford to allow my blood pressure to rise unchecked. Dr. Pippas called my nephrologist, Dr. Raj Alappan, and they decided to prescribe 5 mg of Norvasc to try to control my blood pressure.

I absolutely hate to have to add another daily drug, but I’ve got to try to remain in control of my body’s systems and not allow any of them to tilt out of control. The risk of having a chronic disease like kidney cancer is to keep things as balanced as possible and to try to maintain a healthy immune system. If one major system tips, then the whole thing can spiral out of control and I’d be in trouble.

The other interesting thing Dr. Pippas said to me on Thursday is that Votrient would likely cause some changes in my fingernails. That has begun to happen. The nail beds look a bit different than normal and there is a slightly red rainbow-shaped stripe on each of my nails just above the nail bed. Some of them also have a little indentation right above that red stripe.

I’ve experienced the most highly-predicted side effect of these drugs. Diarrhea (I never know how to spell this word. I always have to look it up.). Thursday and Friday, I had excruciating headaches, probably due to the elevated blood pressure. My headaches have subsided, but yesterday and today I’ve had some nausea to deal with.

All this sounds uncomfortable, and it is, but all-in-all I think if we can control my blood pressure, I should be able to get through this. I just feel pretty lousy all the time.

I’m going to be soon and I’m planning on tomorrow being a better day. I’m going to shoot photos at Columbus Regional Medical Foundation’s Gingerbread Jubilee tomorrow at the RiverMill Event Centre.  If you’ve never been to that event, you wouldn’t believe the amount of pandemonium that can ensue when you’re in the presence of several hundred children who are hopped up on sugar.

The kids will be having an absolute blast. So will the photographer. It is the parents who will look like they’ve been whipped. Such a fun event!

 

RIP Clarence Clemons

I’ve been caught up in a swirling mass of indecision. Frozen in place. Can’t write. Can’t focus. Afraid to look forward. Unwilling to look back. Hung up in the now. It took a dead man with a saxophone to shake me loose. Driving along this morning, heading into town to meet with Dr. Pippas to find out his recommendation for a much-dreaded tyrosine kinase inhibitor medication, I was listening to the Classic Rewind channel on Sirius/XM satellite radio.

Violins and piano — I cranked up the volume until it hurt. Crystal clear highs delivered by tweeters, solid chest thumps from the big woofer that stretches across the back deck of my car and those strains so familiar from Bruce Springsteen and the E Street Band’s, 1975 album, Born to Run. Gooseflesh popped up on my arms. Then Clarence Clemons and his wailing sax delivered the iconic Jungleland solo and it all broke loose. Like a boot off my neck.

I felt my shoulders drop and the tension drain out of my face.

“The poets down here don’t write nothing at all. They just stand back and let it all be.”

My mojo was coming back, compliments of Clarence Clemons, God bless his soul.

Where did I leave you last? Oh yeah, screw Lance Armstrong — blah, blah, blah. And, I was to have scans again in mid-October. There’s been some new and not so good news since my last post. My creatinine levels have deteriorated from a stable 1.8 baseline to a baseline of about 2.3. This will preclude me from having any more CT scans with contrast (unless we’re in a life or death situation and simply must have the contrast). This is going to strongly, negatively impact our ability to clearly see what is going on inside my body in the future.

There is a new radiology group at The Medical Center and I’ve had the great pleasure of meeting the doctor who will be overseeing my case. He’s got a great name. One that I’d like to steal as the name of a character in my novel, if that ever happens. Virginia gentleman, Dr. W. Granville Batte, is a flatwater kayaker and a skeet shooter. I’m looking forward to introducing him to my kayaking buddies. He read my scans and through Dr. Pippas reported that they are stable. That is good news. What we’ve been able to accomplish is to live with this cancer as a chronic disease, not a life-threatening one. It is incurable and if it decides to turn it up a notch, it will kill me. But right now, it is stable and although it presents a challenge, I am able to live with it.

After a consultation with Dr. Dan George and Dr. Andrew Pippas, we’ve decided to take the Votrient route. Pazopanib is the drug name and it was approved for use against kidney cancer in April of this year. Although it is not the most potent of the drugs I could use, it is decidedly more kidney friendly and has a more manageable side effects profile. If you click on the drug name, the information about the drug will open in a new window. Most of the side effects won’t be visible to those around me, hopefully. What will likely happen that will be noticeable is that my hair will begin, very shortly, to turn completely white. Unlike some of the other choices we could have made, this drug isn’t supposed to destroy taste buds. These drugs are very powerful tyrosine kinase inhibitors and though they won’t deliver a cure, they can certainly prolong my life.

So, once we get all the financial implications of our co-pay for Votrient settled (this drug costs north of $100,000 per year), I’ll start taking the medication in a few days to a few weeks.

I’m sorry for the long dry spell. I haven’t been able to write and I’m just glad I was in the right place at the right time this morning for The Big Man to jolt me out of my writing reverie. This blog is a tribute to musicians of every stripe. Just how much good music does in the world is underrated.

Rest in peace, Big Man…..