Columbus and the Valley

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.

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?

TMI

Let me start with the good things: I had my best friend by my side. I didn’t throw up. I didn’t get thrush. I got to cuddle with a beautiful Golden Retriever, the nursing staff was golden. They were attentive, seemed to know what I needed before I needed it and were right there with a drug to help me with it. Now that I look back on this list, that is a lot of good things. TBTG!

Now, I’ll tell you the bad stuff. I have skin in my fricking eyes. Yes, every part of me, my eyelids, my tongue, my lips, my face, my ears and EVERYTHING else you can imagine is peeling. And the little bits of skin are in my eyes. I cannot even describe how uncomfortable I am. I was complaining about how the skin flakes looked on my black shirt. Grandin Eakle just laid it out, “Wear a white shirt, dummy!” Well, Grandin, I didn’t bring a white shirt. ol’ buddy. I guess we’ll be buying one tomorrow.

OK, I have NEVER seen testicles like that! And Oh My God, they are attached to me. That is all I’m going to say about that. Please pray for my comfort. It seems it is quite a ways away, from the look of things.

I have gained 20 pounds of water weight. I will start taking Lasix tomorrow to get rid of the additional water I’m carrying.

I got through it. And, after a week or two or recuperating time, we’re going to go back up there and do it again. I can’t believe it. Now that I know what to expect, I may have to have a gun pointed at me to make me go. This stuff could cure me. That is enough of a gun.

I’m going to sleep. Just wanted to update you and I’m sorry. I know it is TMI. I have decided to tell this story, though. The good and the bad. This was some bad shit. Really bad.

Better By the Hour

Well, maybe it isn’t over yet. My lab numbers have spun out of control, it appears. My creatinine has shot up to 3.9 and calcium, magnesium and phosphorous are out of whack. I am listless and all I want to do is sleep. I have gained  15 pounds and I generally feel like shit (sorry momma, but I’ve got to lay it on the line). The PA and my nurse Janet came in yesterday with news that I had gotten through 9 doses instead of eight and that I had done a great job with that.

I’m red as a beet that has been freshly pulled from the ground and whacked open with a knife. If you cut me, I would ooze red. My lips beg for Burt’s Bees and the physicians’ assistants tell me that 99.9 percent of the time, these number will come back into their proper place.  All I can think of is what if they don’t.  Diarrhea has set in and is causing concern, especially since I’m not making much urine.

Jill and I just went for short walk around the newly remodeled section of the 9th floor here at Duke. It is 3:30 in the afternoon on Friday (the day we were supposed to go home) and we’re all concerned about what the creatinine test will show.  We should have results in about 30 minutes. As I’ve been up and around, I’m starting to feel better.

Yesterday afternoon I got a great thrill. They brought in a Golden Retriever whose sole concern was the well being of the people on this floor. They draped me and my bed with a fresh sheet and gave me a squirt of antibacterial gel and the 7-year-old Electra hopped up onto me and positioned her sweet head against my neck. It was a simple, but fantastic experience. Electra make me think of my Dixie, who is wondering where the hell I am.  I can’t even put into words how much I enjoyed ten full minutes of snuggling with Electra. Her soft coat and bright eyes gave me sweet memories of what Dixie looked like about 6 years ago. It was a great gift in a time of need.

Church lady this is for you: I have started and stopped this blog post several times today. People coming in to do their jobs have interrupted me and what I’ve seen as I’ve read it over, prior to releasing it, is that I’ve started to rally and feel better during the course of the day. We had a fun thing happen a short few minutes ago. Chaplain Patricia Smith knocked on the door and asked it she could in to talk to us for a brief minute. “Sure,” I said. She gave us some encouraging words and the conversation finally got down to prayer. “Would you allow me to pray with you,” said Patricial. “Absolutely,” I said. Jill got up from her chair and joined us in a hand-holding prayer reverse Oreo prayer ring. Patricia was the gooey center.

Just as she was about to sling out a prayer that would make Isaiah Huguley proud, the door knocked again and Dr. Jeffrey Peppercorn walked in with extreme trepidation on his face as he saw in this peripheral vision a reverse Oreo hand holding session going on. “Come on in Doctor and join us,” I said. He was as uncomfortable as a white man can be and it was funny to watch. He never closed his eyes during the sweet prayer (I didn’t either, I must confess) and everything turned out great, even Dr. Peppercorn said so.

Bottom line, I’m feeling better by the hour, and we just can’t wait to get back home among our family and friends. We’ve read all your uplifting blog posts and we couldn’t not appreciate any more the love you have all shown us. We’ll be home soon to recuperate and get ready to do it all again, cause that’s the way we roll!