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.

 

Happy to Report Some Good News

I don’t know quite where to start. So, let’s do the uncharacteristic thing and just get right to the point and maybe that will spare those of you who’re not interested in my usual stories, incessant details and dramatic setups. After all, life is short and sometimes it just makes sense to eat the dessert first — especially if you’re suddenly able to taste it!

This past Thursday afternoon, Jill and I met with Dr. Andy Pippas at the John B. Amos Cancer Center here in Columbus, Ga. The previous week, I had submitted to yet another painless blood draw at the hands of the one of the fabulous phlebotomists in the lab there at JBACC. I was hydrated, also during that week, and had CT scans (with contrast) of my chest, abdomen and pelvis. Just two weeks before that, I met with Dr. Raj Alappan, my nephrologist. The point is that I had fresh labs, scans and updated reporting from the person who is helping us watch over Strainer, my only remaining kidney. All of my systems have been checked and the news we got on Thursday was current and as accurate as modern medicine can make it.

Dr. Pippas gave us the news that we’ve been hoping to hear after living through 15 months of raging hell. “Mike, at this moment you are cancer free.”

He said it, despite the fact you’ll not hear me say it. I prefer NED, no evidence of disease. Not sure why, other than NED seems less provocative. A little more humble as I stand in front of the open curtain staring up at the feet of the “All Powerful Cancer,” complete with flashing lights and smoke. I’m sure as hell not the Cowardly Lion. Despite my fears, I have not been any kind of a coward through this thing. But I’m a little superstitious and just not a fan of appearing too cocky in the presence of something that has the power to kill me or strike me down.

All that said, I appear to have been hugely and wonderfully responsive to Votrient, the powerful tyrosine kinase inhibitor drug I have been taking for the past 15 months. My adrenal tumor is gone. The apparent tumors in my right kidney are gone. The tumors in my spine are gone. I have no tumors in my lungs or in my brain (the places kidney cancer cells love to invade).

Looks like the loss of a hundred pounds, the loss of the cuticles around my fingernails, the loss of ALL the pigmentation in my body hair, the chronic daily diarrhea, the almost daily vomiting, the maddening itching of my skin, the inability to taste food, the ever-present brain fog and some peripheral neuropathy in my feet were all worth enduring to get the news we got from Dr. Pippas on Thursday. We are thrilled at this wonderful news and  extremely grateful to our medical team, our prayer warriors, our friends, our church family, our family and all the legions of people who are concerned about us and who have found so many ways to let us know that they care. This is epic good news!

I asked Dr. Pippas, “What do we do now?” “The good news is you’ve got a couple of options,” he said.  (This may get a little tedious, but this blog is about what it is like to LIVE with cancer, so I’m going to take some time to let you into my thought process. You’re welcome to read as much as you can stand.) Here are my options: Since I am now almost at a month off Votrient, we can go back on a “maintenance” dose of 200mg daily to try to extend the reprieve from actively growing cancer. That isn’t a great option, because as I tapered off the drug back in January, I was actually as sick on the 200mg dose as I had been on the full 800mg dosage. Why would I want to do that? Well, I don’t.

The next option is that I can stay off the Votrient and be extra vigilant with CT scans every three months for up to a year and reevaluate again at the end of the year. This is a better option, because the prevailing wisdom (although this wisdom is only anecdotal, as there isn’t any real data to support it) is that for people like me who are excellent responders to the medication, there is every reason to believe we’ll respond just as strongly when and if the medicine is restarted. Andy strongly cautioned me about a couple of things if we choose this option. Although my taste buds have blissfully re-awakened, I have to keep my weight down. My daily routine needs to embrace a spartan diet, mostly vegetarian, with an occasional splurge to keep from going crazy. He wants me to keep my weight at or near where it is today. He also wants me to add back as much exercise as I can stand. Bike riding is a definite. I also need to be lifting some light weights and walking. I’ll need to get myself motivated to get this done. Plus, I’m still really weak from the pounding my body has taken over the past 15 months.

Dr. Pippas is in communication with our medical oncologist at Duke, Dr. Dan George, who is familiar with my case. I’m also making contact with Dr. Hans Hammers (through a friend) at Johns Hopkins in Baltimore who is a world-class kidney cancer specialist. When we get those pieces of feedback, we’ll sit down with Dr. Pippas and make up our minds about what we want to do. My guess is that we’ll likely choose the second option and stay off the Votrient and remain hyper-vigilant going forward and hope and pray the cancer will leave me the hell alone.

I feel like a new man right now. I feel my strength coming back. Next time you see me, take a look at my eyebrows. My hair is beginning the process of growing back in with color. If I get to stay off the drug, the pigment will come back into my hair and it will grow back in some darker shade. Maybe it will be straighter, or curlier. We don’t really know what to expect. I’m just happy to begin to see some hope that my daily prayers of being able to get old with my Jill, see our sons find love and hold a grandchild or ten are looking better. Thanks be to God!

Thanks to all of you who are following our progress. If you know of anyone who is struggling with cancer, especially with a kidney cancer diagnosis, please forward a link to this blog to them. Those of us who are living with cancer need to see that the news doesn’t always have to be bad. Although, it damn sure feels like it sometime.

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.

Thanks for using this blog to stay connected with us. Please share it.

Tumors Continue to Shrink

The last time I posted was March 8, 2013. I’m sorry for that. That is one thing about cancer that no one can prepare you for — you are never really ever right in the head again. I know, “How can you tell?” I know many of you are asking that question right now. Because of my transparency (at least until March 8) my open-book life has left open for all to see that I am, on a good day, not that right.

He ain’t right.

I love that we live in a place where you can say that about someone (or yourself) and people know what you’re talking about. A hell of a lot of water has gone under our family’s collective bridge since March 8. We lost two dear members of our family animal pack. Our Golden Retriever, Dixie, was killed by a logging truck and I buried her badly ruined body. I cried a gallon of tears standing there with a bag of lime and a shovel. By myself, because I wanted no one else to have to see the carnage that was once a beloved member of our family. That same week, Azrael (Azzy), who lived on our farm for at least 15 years up and left. She likely want off to die. Cats will do that. They want to spare the ones they love the trauma of their departure.

If you’ve noticed a tender spot in our latest issue of Columbus and the Valley on our stance on rescuing animals, you’d be right. We have recently rescued a beautiful five-year-old Golden Retriever we named Izzy and a big orange male cat named Garth. These new guys have joined our other inside cat, Zoey, and our only remaining outside cat, Furry Football, and the pack is back whole again. I lost the battle of having indoor cats. I thought (I just thought) I didn’t want them living inside. Jill was of the other opinion. She won that battle, but oh, so did I! The delicious goodness of being able to hug a sweet cat and to have them purr and look at you just like you were the one who hung the moon is therapeutic beyond any possible measure. Physical pain can absolutely melt away and emotional pain is soothed as if real medicine just kicked in. There is real healing in the eyes of a pet. In case you didn’t know that, you know it now.

That animal has chosen you to be its human. They are all in. They’re job is to be your best cheerleader. They’re unfailingly in your corner. Well, at least the dog is that way. I’ve really confirmed over the past few months that we actually work for the cats. They used to rule the world and they’ve never forgotten it. But believe me, if you don’t want your heart invaded, if you don’t really want to fall completely in love with a purring pair of eyes (and the occasional claw) don’t give a cat an inch! They are incredible animals, easy to keep, and impossible not to love, if you get to know them. For those of you who either don’t like or don’t know cats, you’re not living to your full potential. I hope one day you’ll come around and know what the rest of us fully-evolved people know.

One more thing about rescue animals. During this sad time of loss and subsequent discovery, Jill and I had the opportunity to visit on several occasions our Columbus Animal Care and Control Center. Wow, is all I can say! The people there are dedicated, kind and attentive. The animals are well fed, well cared for, clean and loved. I can’t say enough good things about our experience in adopting Izzy. Please use them if you’re thinking about getting an animal. But be warned, sit on your hands for at least one trip out there on Milgen Road. There are some sweet faces out there and they’re all saying, “please take me home!”

Now, for what you came here for, here is my belated health update. My last post (March 8) I reported that the daily 800mg Votrient dose was working. The almost 4cm tumor on my left adrenal gland had shrunk by about 50%. And two small tumors in Strainer (my remaining right kidney) were less noticeable. During our visit with Dr. Andy Pippas at the John B. Amos Cancer Center, he let us know that my scans of last week showed continued, significant shrinkage of the lesions. The adrenal nodule is only about 5-10% of its original size and the two small spots on Strainer are almost entirely gone! So, the white hair, vomiting, lack of appetite, sensitivity to the sun, itchy skin and chronic diarrhea now seem to be a small price to pay for stabilizing this cancer, giving me more life to share with my family and friends and more time to make my mark on a place that I love.

I have lost a frightening amount of weight. About 70 pounds, representing over 26% of my body weight, has come off due to the lack of appetite and my inability to keep food down. I’m meeting with Beth Bussey, a wonderful nutritionist at the JBACC, and we’re plotting to find foods I can eat that I can properly digest. The big thing is my appetite. I would slap the smile off Jim Morpeth’s face for a Country’s barbecue sandwich! But, I wouldn’t be able to eat it without an almost immediate refund. Recently, we stopped by the new Meritage on First Avenue in UpTown for lunch. Chef Ashley Simmons Parsi-Graciani goes to great lengths to whip me up a vegetarian delight that hits my sweet spot (whatever that happens to be in that given moment). More often than not, when I finally sit down to eat, the nausea sets in and I just can’t bear the thought of putting something in my mouth. It is really frustrating, and the dramatic slide of my weight is becoming a concern to my caregivers.

It is a shame that marijuana is an illegal substance. I left my marijuana doctor office today with a prescription for Marinol (http://www.marinol.com/). This is a synthetic rendering of THC, the active ingredient in marijuana. It should banish nausea and also stimulate my appetite. We’ll see. It is shameful that there is a naturally growing herb that could bring relief to people who are suffering with cancer, aids, glaucoma and other serious chronic conditions, and that we can’t legally acquire it. Boy, I never thought I’d be putting myself out there to be an advocate for legalizing marijuana. But I’m there, folks. It just makes me angry that this good medicine is out there, but I can’t have it. I’m not expecting to see much public feedback on this one, but I’m curious about what people think about my comments here on this volatile subject.

I’m going to weigh in here on another volatile subject. At least, some of the local media and the nutbags — the regular 20 or so posters — who have tried and convicted MY DOCTOR, Dr. Andy Pippas for a alleged boatload of billing infractions. I know the media has a job to do. I do that same job every day. But, I really don’t like the tone that so many people have taken against a man who has lengthened lives and provided healing to thousands. I had him look me in the eye today and tell me exactly what I needed to hear to expend whatever personal energy I can to be a loud, proud member of Team Pippas. I am walking around today because of his great care and the care of the members of his John B. Amos Cancer Center team. I’ll be happy to talk to anyone about my experiences under his care. But if you want to engage me and just run him down, I’ll cut you off at the knees.

I hope to be able to keep a steady writing pace. There is much good going on in our lives and it makes me happy to be able to share it. I’ve said a lot in this post. There’s more where that came from.

Good Options Still Available

Dr. George called me right on time this afternoon and we had a 15-minute discussion of our options. First of all, we don’t know the whole story yet about my creatinine level. There is every reason to believe that it will normalize somewhere at or near the 1.8 baseline we had going into the HD-IL2 therapy we had beginning about four weeks ago at Duke University Hospital under the ultimate care of Dr. Michael Morse. Two weeks ago, my creatinine reading was at 2.3 and trending downward. So, not so far off of what we’d hoped for.

Regardless of whether or not it goes back to the baseline, I will not be able to have any further HD-IL2 treatment at Duke. Dr. Morse had effectively put the kibosh on that. His reasoning is that it may not be safe to continue. I was thinking outside the box during my conversation with Dr. Morse yesterday and posed this question: “What if when we scan the middle of October, we find that I’ve had a great response to HD-IL2 and a continuance is warranted? What if we go forward and I sacrifice my “good” kidney for the possibility of a complete cure and deal with dialysis until I can get a transplanted kidney?” That discussion seemed to make Dr. Morse pretty uncomfortable and he said he’d be glad to refer me to some other HD-IL2 program, but that he wouldn’t undertake that scenario with me. (Note Sandy Gunnels’ remark on my previous post. She had the same question.)

I talked about that with Dr. George today and he agreed with Dr. Morse that any treatment program that might ultimately irreparably damage Strainer wasn’t a smart thing to attempt. Here’s what he did propose: We’re going to check my creatinine this week and again in two weeks. That gets us to mid-October, the magic six-week mark when a CT scan will determine whether or not the HD-IL2 did me any good. If I’ve shown a measurable positive response, he will refer us to NIH (National Institutes of Health) in Bethesda, MD where he knows physicians that would likely be willing to undertake a more agressive HD-IL2 treatment regimen that would still be safe for my kidney.

I don’t think undertake was a particularly rosy choice of verbs, now that I think about it. “Attempt” sounds so iffy. “Administer” sounds too Nazi-ish. “Dispense” sounds too pedestrian. So, “undertake” it will remain. I digress….

If the mid-October scans prove the HD-IL2 to be inconclusive or ineffective, then we’ll likely opt for six or so months on a tyrosine kinase inhibitor (oral chemotherapy) pill therapy and then, according to Dr. George, “consolidate” the tumor burden by doing surgery to eliminate the left adrenal gland and get rid of the two small tumors in Strainer.

All that medical mumbo-jumbo to say this: We have a plan in place that will address whichever scenario we’re presented in about three weeks after the scans. I still have options — maybe good ones — that could extend my life and protect my quality of life.

My outlook has taken a good turn upward today. I’m happy to report that. During my funk yesterday I decided on the title of the blog post I’ll have to write if I find that all my options are gone and that I’m riding that bobsled on the slick ice of my last days. If you see a post titled, “Circling the Drain,” then you’ll know I’ve emptied my gun, like those poor red-jacketed soldiers in the movie, “Zulu,” and that I’m about to be overrun and out of luck. I hope I’m ninety years old and a large pain in my sons’ asses when my arthritis-twisted fingers have to type that title.

Until then, we press on, optimistic about our chances to beat this and determined to write my way through it as honestly as possible. Thank you for the support, the concern, the love and the morbid curiosity that has delivered more than 105,650 page views of this blog.

By the way, if you’d like to know how powerful a blog can be, jump over and Google “Dr. Dan George” right now and see where my blog lands on the list. I met Dr. George this past January and during January I posted my first blog post that mentioned him. Now, since January, my blog sometimes appears at the top of the list when you search his name. Incredible!