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.

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!

 

No Call, That’s All

Jill and I are getting ready for the trip to lower Manhattan on Friday. Someone with access to a plane has generously given us some of their flight time for this trip, so we’ll be leaving early Friday morning and coming back on Friday evening. The opportunity to go up and back is a real blessing right now and has, honestly, allowed the trip to happen so quickly.

I just got off the phone with Dr. Dutcher’s office and she has given her approval for me to shoot digital video at our office visit on Friday. I wanted to do that for a couple of reasons. I want to remember every word she says, so that I can share them with Dr. Pippas, who I’d really like to have with us on Friday. I’d love for my incredible, mad-scientist oncologist, Dr. Andy Pippas, to have a conversation with HDIL-2 guru, Dr. Janice Dutcher,  while I was a fly on the wall watching. That would be great. But the video will have to do, in this case.

Also, I’m going to consider posting some, or all, of the video on my blog for people to see Dr. Dutcher in action. She is a world-class renal cell cancer oncologist and is highly sought out for her knowledge about this insidious disease.

If a couple of back surgeries and cancer were not enough, I have developed a case of gout in my right great toe. It hurts like hell. I was able to reach my friend and podiatrist, Dr. Alap Shah, who prescribed a kidney-friendly medication to relieve me of the gout condition. He also recommended that I make contact with my regular family physician, Dr. Clark Gillett to manage the issue going forward. I think all doctors are taking a much-needed vacation here at the end of the year. ALL of my docs are out of the office today.

I’m a little bummed out that we now have gout to go along with all of my other health concerns on the table as we leave for New York to see Dr. Dutcher. I hope this won’t muddy the water for what we need to do going forward. But gout is caused by an elevation of uric acid in the blood. I figure uric acid must also have something to do with my kidney and I’m worried about it. So, I called my nephrologist to get him to weigh in on this.

By the way, my nephrologist, Dr. Raj Alappan, who was also not in his office today was supposed to be covered by Dr. Tamorie Smith. I talked to Linda at Dr. Alappan’s office three times today. Twice, when I called her to confirm that I would be getting a call by the end of the day today and once when she called me to confirm my date of birth and that I would be getting a call today. Dr. Tamorie Smith, whoever she is did not call me as promised. Thanks a lot, Dr. Tamorie Smith. No call, that’s all!

I think this is the first time since the diagnosis of my cancer that I have been left hanging with what I consider to be an important medical question. Other than Dr. Tamorie Smith, I have received prompt attention to my every medical situation.

Wow, I just realized what I said in the previous sentence. “My” cancer. Not “my” diagnosis of cancer, but “the” diagnosis of “my cancer.” Now that I think about this, I’ve heard most other people refer to their illness as “their” cancer. I can understand that feeling, because it literally takes over your life. In fact, it becomes your life. I will not give it that much power over me again. From this very second forward, I will refer to this damn disease as the life-robbing interloper that it is. It is not mine. I don’t want it. I will not lay claim to it again in this blog or in conversation, so help me God.

I have my Flipcam charged up. We’re ready to fly. On to the Big Apple with a great, hopeful attitude. And, thanks again, Dr. Tamorie Smith.

It Took a Village (Repost)

FYI: This is a repost of my last blog post that many of you didn’t get a chance to read before our hosting company (justhost.com) dropped the ball and left our website inaccessible. They have also said they don’t have a backup after Nov. 23, which means my last two posts have disappeared into nowhere, along with all the great comments we’ve received from many of you. Starting on Monday, we’ll be looking for another hosting company. Here is my latest post:

Oncologists, neurosurgeons, radiation oncologists, family doctors, nephrologists, nurses, techs, physicists, engineers, pharmacists, insurance companies, church family, immediate and extended family and a hoard of friends numbered seemingly like the sands on the seashore — individually, in prayer groups, on renal cell internet forums and on the street. This is my village.

As just a sneak peak at what I have to tell you tonight, I messaged Dr. Mike Gorum late this afternoon to thank him for his good work (good work, that in concert with his partner Dr. Marc Goldman, likely kept me from writing this message in a wheelchair instead of my comfortable leather chair). He said the most un-brain-surgeon-like thing: “You don’t need to thank me, you need to thank a bunch of physicists, engineers and other doctors that work behind this scenes. I just stand out there and take all the credit.”

After the rather curt dismissal we received when we went for follow up at Emory University Hospital in late summer, we began to assemble our village here in Columbus. Drs. Andy Pippas, Mike Gorum, Marc Goldman, Clark Gillett, John Cabelka, Doug Ciuba, Raj Alappan and a host of their PAs, nurses, techs, engineers, physicists, pharmacists and all the advice and drugs they rendered and prescribed. Also, the John B. Amos Cancer Center, The Medical Center, Hughston Hospital and Atlanta Falcons Physical Therapy.

My love fest with our village started from the moment I announced that I had been diagnosed with kidney cancer. It crescendoed on March 19 of this year at the American Cancer Society’s Crystal Ball, where I was this year’s honoree. That was one of the greatest nights of my life. It was very much like being able to attend your own funeral while you are still alive (minus the DJ, band, silent auction, liquor and dancing).

Having cancer sucks, but getting the drop-to-your-knees-and-cry benefit of learning how much you’re loved by your community is a gift that will keep giving until I draw my very last breath. It has been life-changing for me and my family. If you don’t already know how much I love all of you and how much we appreciate each gesture of concern and encouragement, let me be very clear. Our village has healed us, sustained us, fed us — physically and spiritually — cried with us and shouted for joy with us and this has been what has sustained us through dark hours of pain, fear and suffering.

I spent all day yesterday at the JBACC getting fluids. Went back this morning at 7:30 and they stuck another needle in my right arm and kept on pumping. We reported to The Medical Center a little after 10, where they checked my creatinine (1.8, not great, but not bad enough to keep them from using contrast media to enhance the scan), fed me another cup of delicious barium and slid me onto the CT scanner table.

Then it was back to JBACC for an after-scan flush of another bag of fluids to protect Strainer (in case you don’t know, Strainer is the name of my right, remaining kidney). I texted Dr. Pippas’ nurse to let her know that I was in the cancer center, and that it sure would be nice to be able to get some feedback from Dr. P about my scan.

She texted me back and basically said, “Come on down.” Only, it was really up….to the 3rd floor where the team of top-notch medical oncologists ply their profession. So, Jill and I headed on up, signed in, got triaged and settled in to get this very important call to come in to see the doctor.

We were called and made our way back to a treatment room to wait to see Dr. Pippas. After a few minutes, I could hear him dragging my rather voluminous chart out of the door pocket and could see the door handle turning, signaling the imminent delivery of the news we’ve been to anxious to hear.

After a few formalities and the typical barrage of questions from my favorite mad scientist, he opened the three-inch-thick folder and drew out two sheets of paper that represented the salient facts gleaned from the scan that I had had only a few hours earlier.

“This scan is completely clear. There are no metastases in your lungs, abdomen or pelvic area,” was how Dr. Pippas characterized the information. Hallelujah! This is going to be a great Christmas.

In my yesterday post, I outlined two possible outcomes of this scan. This was the one we were hoping and praying for. No Evidence of Disease. NOW, the wolf is still at the door. We will have another MRI scan in about two weeks to determine once and for all that the stereotactic radiosurgery has effectively killed the tumor in my spine.

The MRI could also see if there are any other small soft tissue tumors in that general area. The bottom line is that we (our medical village) still thinks we need to pursue some type of systemic therapy to go after any other cancer cells that might be floating around inside of my body.

Today I heard from a representative from Dr. Janice Dutcher’s office in New York. I have already heard from Dr. Dan George at Duke. After we get the MRI results in mid-December and correspond with those two docs via email and/or phone, we’ll know whether the HDIL-2 systemic therapy is feasible and if so, will schedule it either in New York or at Duke. For all sorts of reasons, I am adamant, and Dr. Pippas agrees that I am not going to settle for any kind of tyrosine kinase inhibitor (read it and weep: http://www.ncbi.nlm.nih.gov/pubmed/19689244) before I know without any doubt that HDIL-2 therapy is completely off the table for me.

So we press on. Happy for the gift of this news so that we can brush cancer aside and enjoy this advent season, watchful, hopeful with the scent of Fraser fir (named for the Scottish botanist John Fraser) in our nostrils.

I am not cured. The chances are high that this cancer will come back. We will remain vigilant, hopeful and keep a fresh can of whupass handy if we need it. For now, we are blissful! I can concentrate on getting back the strength I’ve lost and try to figure out how to properly thank my village for standing by us for the past two and a half years. This time has changed me.

I didn’t intend for this to be a thousand-word post. In fact, when I finish this sentence, it is at 1,104 words. I will shut up, now.

Goodnight!