My last blog post was April 13. I have tried every day since to gracefully accept the measure of health I can wrestle from a disease process that is for now being held at bay…by a pill a day. Those pills cost my insurance company over $500 a day. The math nearly brings me to my knees.
Thankfully, all my systems are within acceptable limits and the tumor in my spine is being kept stable by a daily 60mg dose of Cabometyx. When I run into friends I haven’t seen in a while, there’s a time warp to connect the sixty-five-old me to a fat profile that, when I last sported it, I was walking the halls of Hardaway High School. If you think that’s weird for you, you should feel it from this side.
Know this, Jill and I appreciate the constant love we feel from every channel of our lives. I never dreamed we’d still be at it ten years after my diagnosis. We are grateful for the gifts we’ve been given and for the legions of family and friends with whom we’ve shared our lives.
We had a perfect Christmas this year. The annual Christmas hayride happened for the first time in three years and I hope we made a few memories. Saturday, on the day of our hayride, a crisp, bluebird day was a perfect backdrop for our ride.
We got some good face time with all the boys and their significant others, our parents, siblings, some nieces and nephews and friends during the Christmas holiday. I think Jill and I had a personal best in the holiday decoration category. Unpacked it, put it up, took it down, packed it up. Back in the barn. Bam!
For the past couple of years, we got a unique perspective of the courtship of our son, Christopher, and his main squeeze, Kathryn Anderson, of the California Andersons. Some few months after they met, Kathryn joined our team at “Columbus and the Valley” and got to witness firsthand, a rare glimpse into what makes her tick that most “parents of the partner” would never get the chance to see.
We are thrilled that Kathryn and Christopher are engaged! Here’s what I’m more excited about: I’ve watched our son blossom with Kathryn at his side. She makes him happy and that makes me happy. She is compassionate about her causes, really smart, protective of her pack, competitive and so much fun to be around.
Having the great pleasure of working with Kathryn and getting to know her organically and we enter our new roles in each others’ lives. I could not be more excited about having Kathryn join our family.
That’s all I’ve got for now. That, and this big ol’ smile.
Music Leads the Way During Christmas Season
Music is a huge part of my life. Always has been. At almost 64 years of age, I find music is the frame upon which I hang the events of my life. I might not remember that the event happened in 1989, but I remember with startling clarity hearing Rick James’ “Superfreak” in my ears, sitting on the ski lift next to Harold Hampton as we laughed about a sign encouraging people to attend a “Diamond Cutter” workshop that afternoon. That was back in the days when I could’ve hosted a diamond cutter workshop several times a day. (Women friends, ask your husband why this is something to celebrate.)
Through the highs and lows of my life, music was there for solace or a lyrical high five. I spend a lot of time in the car by myself, as Jill and I take separate cars to work every day. I’m in the driver’s seat with my thoughts and my music — LOUD — sometime with gooseflesh on my arms, and sometime with tears dropping off my chin onto my shirt. The result is that the music firmly grounds me onto that place in my memory when that song was playing and something significant was going on. The slice of time is front and center and whatever emotion was present then is present here again at 70 miles-per-hour and it is a remarkable treasure, there in that fleeting moment and then gone, until I play that song again.
In this Christmas season, now my third one on truly gifted time — time that medical statisticians said I wouldn’t get — I’m awash in gratefulness, and trying desperately not to give in to the fear that still haunts me every day. Will it come back? Will it come for me again? How can I ever go back again to that pain, to that place where everything tastes like aluminum foil, where sleep comes in fits and starts and fear is overwhelming?
I have attempted to try to write what this feels like: Me getting my life back while so many others are still in their dark place, having to undergo so many procedures, scans, needle sticks, tests and not being sure of their next day. Yes, I still have my share of all those awful things, but mine are sauced with a healthy helping of real hope. I think this is survivor guilt, just like a soldier feels when he comes home from war while others died on the field of battle. Part of me wants to celebrate, part of me wants to sit quietly in shame as my brothers and sisters continue to wither from their marching disease processes.
Despite my lingering PTSD, and the apparently permanent fear and loathing I have had tattooed onto my brain, I am so sincerely thankful for all that I have, mostly for my family and friends and for my cancer relationships. I walk through each day with the eyes of a child, soaking in beauty and goodness in large measure. My heart sings with gratitude, led by the songs on my radio. So, listen to my songs of 2016 in this Spotify playlist, and think of every person you know who needs to be encouraged, to feel love, to find warmth, to be hugged, to be fed.
Hear my gratitude for so many who have encouraged me, loved me, hugged me and fed me. Merry Christmas.
Christmas Bell
I reached out and took the bell from my friend and fellow St. Matthews in-the-Pines Episcopal Church parishioner, Nancy Reid, and settled in for my annual hour of standing at a red steel kettle for the Salvation Army. If you’ve never had the pleasure, it takes a little moment for you to get your groove on. To snap that little handbell just right, so the clapper raps the other side of the bell just right. Doesn’t slide around, indicating a less than perfect throw. A lifelong percussionist, the paradiddle I raised with that bell today, almost a San Francisco-cable-car-driver-kind-of-ring was medicine for me.
One o’clock sharp, I was standing in front of a place I haven’t walked into since December of last year. Our St. Matt’s parish decided to take care of this Saturday’s Salvation Army Christmas kettle site on the grocery side of the Wal-Mart Supercenter out on the 280 Bypass in Phenix City. I did the one-hour shift alone since Jill is under the weather on this, her birthday.
I, my bell and the kettle parted a human highway. Because I am a sick, twisted asshole, I started out doing what I love to do at Wal-Mart, making fun of the wacky “people of Wal-Mart” inside my head.
I’m ringing the bell. Ringa ding ding. I’m smiling. “Merry Christmas!” I’m thinking, “Nice man bun, dude.”
Ten minutes into the thing, I’m really on a roll.
Then I started making eye contact with every single person in the eastbound lane of the Wal-Mart human highway. A hispanic family came toward the door. Fluent Spanish. Three kids and two vertically-challenged parents. The stocky boy, he was about 6, I guess, and I did one of those quick “Hey, how ya doing” bobs of the head. He had a two-inch tall flattop haircut and a round, tanned face. They walked by me and through the door without stopping, my “Merry Christmas” greeting trailing off to their left like a graphic rendering of a Christmas doppler effect.
The bell I had handed to me this year was nice. It was substantial, with a nice, heavy clapper. The handle was short, but sturdy and it rang out just right.
A woman came out of the door, finished with her shopping, and pulled up next to me. We talked. Her husband had died this year and she moved down here from North Carolina to be near her children, who live in the area. “I always like to give to the Salvation Army. They do such good work,” she said, “but I don’t have any cash.”
“Why don’t you just write a big check?”
She reached into her purse, pulled out her checkbook and wrote a $200 check! I gave her a hug and we wished each other a Merry Christmas and she headed out into the sunshine.
I was beginning to feel my Christmas mojo stirring. A few years ago I had a chance meeting with John Henry Clark that ended up being my favorite Christmas gift that year. Today, it was a recently-mocked throng of everyday people at a Wal-Mart that opened my heart to Christmas.
A family of five, three of whom were physically challenged, reached into their pockets and hit the kettle. Another family came by: Two adults walked by, but their three children stopped. The little girl had a coin purse which she zipped open. She took out a few coins, looked me right in the eye and dropped then into the red kettle. The two boys reached into their jeans and did the same thing. “Merry Christmas!” This time, I’m saying it with a huge smile on my face. I could not possibly deny that feeling I had coming on. I felt just like I did at 3321 W. Britt David Road. Christmas morning, all four of us straddling a floor furnace in the central hallway of my family home. Christmas warm.
No more mocking the Wal-Marters. These were my people. We were working this thing together to raise money for folks who would really need it this Christmastime. I had so much fun. The world felt back on its tracks. No Donald Trump. No mass shooting. No one shouting. No one angry. I highly recommend this. If not this year, ring a bell another time.
More people coming out. I’m starting to recognize people I greeted on the way in. All are delivering on their promise to, “Hit you when I come out.”
Here comes the hispanic family. Little flattop boy walked over, reached into his pocket, and dropped a nickel into my palm. He looked up at me with dark chocolate eyes and I swear to God, said, “Feliz Navidad.” Sometimes a writer just gets a lucky story gift.
These are the days that make a life. Chance encounters with people who teach you something. Small gifts from big hearts. I am fully open now. My arms are out in a wide embrace of my family and friends.
It all started with a bell.
Foiled Again
I’m so hungry. Like a desperate man roaming in the desert, I’m conjuring perfectly plated dishes of my favorite foods in hallucinatory flashes. Last night I stormed the kitchen. With pure love in my heart, I built a handcrafted fra diavolo sauce. Crushed garlic, San Marzano tomatoes, Vidalia onion, extra virgin olive oil, salt, pepper, red pepper flakes and the tiniest pinch of sugar, simmered just so. Al dente spaghetti noodles bathed in the sauce welcomed my fork, and as I twisted up a steaming bite I recalled the thousand or so other times I’ve had this dish and hoped this one would be no different.
Thankfully, I had only given myself a small portion. My memory will have to do, as the flavor I had expected — in fact, longed for — was cast aside by the shredded, slightly sweet aluminum foil taste that lurks at my every bite. Our Golden Retriever smiled at me. Her taste buds seem just right. In our meeting on Thursday with Dr. Pippas, when we were talking about my experience with Votrient, we discussed the departure of my sense of taste. He chuckled as he said, with my complete understanding and concurrence, that it wouldn’t be all bad if I were to lose 30 or 40 pounds. I get that. Not eating when you can’t taste is turning out to be easier than not eating when your taste is spot on. I’m a half-full glass kind of guy.
Our meeting with Dr. P was good. My labs looks good, especially the creatinine number. It has finally dropped back to very near the baseline that I had prior to the Duke HD-IL2 adventure. Still locked out of HD-IL2 as a treatment option, the door could be open again for CT scans with contrast if I’m in a life-threatening situation and we really need the sharper scan. He has kicked my Votrient dose up a notch to 600mg per day. When my next shipment of the meds arrive, I’ll go to three 200mg pills per day. As my body adjusts to the medication, I’m hopeful that side effects will remain tolerable.
The other news is that I spent parts of Wednesday, Thursday and Friday at West Georgia Eye Care Center. Christmas night I starting seeing flashes in my eyes and developed floaters in my left eye. Two trips to see an ophthalmologist there and then the third day to see retina specialist, Dr. Nicholas Mayfield, to thankfully rule out a retinal tear. I’ve had some bleeding in my eye, but unless something else drastic happens, the floaters should subside (or my brain will adjust so that they aren’t as annoying) and I should be fine. I had a good experience at WGECC and I feel like I received excellent care.
I hope you all had a great Christmas (or whatever else you celebrate at this time of the year) and that 2013 will be a good year for all of us. I could use a good year. What about you?
Scanxiety
We leave tomorrow morning for a quick trip to Emory for a follow up on my radiosurgery with Dr. Liza Stapleford. I had an MRI without contrast media last week. Since Dr. Pippas ordered the MRI, he’ll have to give the OK for the radiology department at The Medical Center to release a disk containing the scans for us to take to Atlanta. What I’m hoping we get is a brief report that all is well and that the stereotactic radiosurgery did what it was supposed to do. If I get my best birthday wish, she’ll say that the tumor is dead, that she doesn’t see any more problem areas and that the hole left in my spinal vertebra will heal with time without any structural issues.
My kidney cancer friends call these days scanxiety days. I know why. Despite the Christmas, New Year and birthday holidays, I have been doing a pretty good job of pushing the worry back. With an answer coming tomorrow, tonight will be a different story.
Now, before any of you who I have recently drunk dialed get excited, there will be no Xanax on this trip. So, Joe McClure in particular, I won’t be calling you to grill you on any of the lyrics to songs you’ve written. Rusty Scoven, I won’t be called you to talk about pineapples and, Michael Venable, I won’t be asking you to bring me any cupcakes. I’m hoping this is just a short trip to Atlanta to have a chat with a cute radiation oncologist. I will be blogging again tomorrow and I hope I’ll be telling some good news.
2011, don’t let me down!