Columbus and the Valley

“Why I Changed My Mind About Weed”

I’m in a weird place. I have lost almost 75 pounds since mid-November, 2012. On average, almost two pounds per week for every single one of the weeks that have passed since I took my first dose of Votrient, an oral chemotherapy. Jill and I are going to a wedding on Saturday and until yesterday, when I picked up a new suit from Chancellor’s Men’s Wear, I didn’t have a single suit, sport coat or tuxedo that I could wear. I’ll admit that when I was younger, I was a major clothes horse. I was reminded of that yesterday when Roger Stinson handed me my new suit pants and sent me into the tiny freezer — which is the infamous Chancellor’s changing room — and I emerged and had him slip on the new suit coat. The feel of a new suit of clothes that REALLY fits is a thrilling thing! I have worn fat clothes for so many years that the complete and utter thrill I got seeing myself in that incredible suit made me want to dance. Roger turned me down though.

This rampant weight loss is hammered home all during the day, as I witness people looking me right in the eyes and knowing that they don’t recognize me. Today at the Chamber Lunch and Learn, our office mates went to support Helena Coates of Media, Marketing and More! as she was today’s presenter. I haven’t been to any Chamber events lately, so I saw a good number of people there that I haven’t seen in months and months. Kat Cannella was one of the folks who I spoke to who didn’t have a clue who I was. She came over at the end of Helena’s presentation and we talked about my shocking weight loss and the loss of my hair color. I look very different, and Lord knows, I sure feel different.

The act of eating, finding things I can eat, the timing of meals and the difficulty of keeping food down are consuming larger amounts of attention in every one of my days. For instance, the very nice luncheon that was prepared for the Chamber event didn’t include a single item that I could eat. So, I sat with my peeps while they ate and after I dropped them back at the office, I visited Freeze Frame on Broadway and ate a nice cup of my favorite swirled orange/vanilla frozen yogurt with toasted almonds. It filled me up and made me smile all at the same time. Some days I just can’t eat. The very thought of putting something in my mouth makes me want to heave. For someone who has spent hours in a kitchen preparing the perfect meal for guests, running a competitive barbecue cooking team, organizing wine tastings and being something of a self-proclaimed talking head on food/wine pairings, the fact that I am having such a difficult time getting nourishment and stanching a precipitous slide in my body weight is just a shocking thing.

My doctors are concerned, my wife is concerned, my mother is concerned and I’ll admit, lately I’m really starting to get worried about where this might be going. Cachexia is the official medical term for this wasting away of one’s body/muscle mass. My skin has become very thin, my muscles are atrophying and the worry about whether or not I can eat is causing stress that I didn’t anticipate. Although becoming empty will almost always make me sick, sometimes the indecision over what or whether I can eat keeps me from doing what I know I have to do and just put something in my stomach.

I’ve reported in this blog that Dr. Andy Pippas prescribed Marinol, which is a man-made version of the active drug that is in cannabis, tetrahydrocannabinol. My prescription contained 30 pills with instructions to take up to two per day. I’m about three weeks into the prescription and although I have suffered from some level of food trauma every day, I have only taken about half of the number of pills prescribed for the 30-day period. I’m not sure why I would be given 30 twice-per-day pills and be expected to have them last for 30 days, other than maybe this was a test firing to see if the pills work for me when testing for drugs. The Marinol does work to some degree, although the appetite stimulation part of the expected drug action seems less than adequate. It does seem to help with the nausea, but it hasn’t done much to make me want to eat.

The Marinol doesn’t work as well as the real thing. Back when I started taking the Votrient, someone brought me a marijuana laced chewable. It was a four-dose chunk of chocolate that tasted like a Tootsie Roll. I was warned that if I hadn’t partaken of any pot recently (and, I hadn’t) that I should be cautious and maybe treat it like an eight-dose item. What I realized right away is that my nausea dissipated in about 15 minutes and that I was definitely more inclined to eat. So, not only did I want to eat, but I was more likely to keep what I ate down. If some combination of Marinol and the occasional dose of self-prescribed medical marijuana or  can stop this weight loss and allow me to develop enough strength to begin some kind of exercise, then I might have a chance to actually be able to become fairly healthy again in spite of living with a deadly, incurable stage IV cancer. The info on www.sacredkratom.com/ about this is clear, the hard chemicals we use as medicine are often more damaging than they should be.

It is the side effects of the chemo — diarrhea, vomiting, weakness, numbness in extremities, dizzyness and lack of strength that make some people give up. “I just can’t deal with this anymore!” Finding something that will restore as much of a normal life as possible in combination with a great wife, incredible children, an awesome family, good church friends, kind co-workers and a good network that give cancer patients the continued ability and will to fight the disease that is trying to kill them.

Today I read an article written by CNN Chief Medical Correspondent Dr. Sanjay Gupta. The piece, “Why I Changed My Mind About Weed,” was interesting. There is apparently way more data than was originally thought to back up the notion that not only is marijuana, aside from its recreational activities, is not highly addictive, but it is also quite helpful for many medical issues without most of the side effects that come with powerful narcotics and other classes of drugs. According to the cannavapos twitter, citizens in some 20 states and the District of Columbia have ratified some form of legislation that makes marijuana available for medical applications. It is time for this to happen on a much broader scale. Cancer patients who avail themselves of a tried and true, natural form of relief from their misery should not have to feel like criminals! If this discussion makes you uncomfortable, I’m sorry. This will not be the last you hear from me about this.

Five Million Words Escaped Me

Women supposedly speak about 20,000 words per day, a number that is exactly 13,000 more words than the average man speaks during that same day. That means around about 160,000 words are spoken in our office each day by the eight women who are here every day. Another 80,000 are spoken by four other women who are close to me, but are not office mates. So, how in the hell did 12 women speaking a total of 240,000 words per day over a three-week period (which would yield just over 5 million words) keep one single word from getting to me about the fantastically sweet surprise that they, in cahoots with you, delivered to me at lunchtime today.

I knew this was not going to be a typical office lunch today for two reasons: It seemed to be planned days in advance and Rick McKnight, organist and Kiddie clothier extraordinaire, Betsy Covington and Ellen Brooks from the Community Foundation of the Chattahoochee Valley and Cyndy Cerbin from the National Infantry Museum were present. We took advantage of this glorious blue-bird-sky day to have lunch outside on the Houlihan’s patio under two large umbrellas. We ordered drinks and food and eloquent Betsy called us to order. She really did! She does that at Rotary every Wednesday and she’s quite good at it.

She said that the assembled group (Julie Chandler, Callie Sprague, Jenn Apffel, Cyndy Cerbin, Ellen Brooks, Rick McKnight, Betsy Covington, Marquette McKnight, Shelley Dean, Helena Coates) had been talking about the concerns I had blogged about — the one about going for treatment at Emory where I wouldn’t be among friends. My greatest fear has been going outside the comfort zone, surrounded by my friends/healthcare professionals here in Columbus. Betsy continued by saying that the group at the table, with some help from our computer consultant, Gerrit DeWitt, had initiated a three-week campaign to gather my army of supporters to send messages of encouragement to be placed in a journal and signatures on a T-shirt so that anyone who saw me coming at Emory would know I was there along with what Sherrie Watkins called my “traveling Verizon network.”

Betsy handed me a gift bag that contained the fruits of all this labor. First, a colorful T-shirt that says “I am strong, hell of a writer, amazing, beloved, mighty warrior, determined, heroic, courageous, prepared for battle, foul-mouthed follower of God! Secondly, a cd from Rick containing an organ-accompanied choral rendition of the poem “Fight the Good Fight.” And, a journal with photographs, handwritten messages and printed emails from dozens of my friends and regular readers of this blog. I’m speechless — but I have managed to cobble this post together to say thanks to these wonderful friends who joined Jill and me for lunch today and the hundreds of others, like you, who read this blog and are following us on our journey.

I expected this post to be the one that let all of you know about my next trip to Emory to set up the SRS, but I am still waiting to hear about the consultation between Drs. Stapleford and Hadjapanayis about the viability of SRS as a treatment for this spinal metastasis of my kidney cancer. Honestly, I know they’re busy up there, but going into a weekend with questions unanswered just sucks. My blood pressure has responded with a predictable upward trend line that I’m beating back into submission with a new medication.

This post is a big ol’ thank you for the This-is-Your-Life moment I had at your hands at lunch today. If this is a taste of what next March 19 at the American Cancer Society’s 2011 Crystal Ball is going to be like, I’m not sure I can take it. People, let me tell you, I’m smiling like Woodstock right now. Getting to feel the love of all the people who love you while you’re still alive and kicking is impossibly wonderful. I’m moved beyond words and Jill and I are most thankful for this gesture of kindness and support.

I’ll post again as soon as I get the call I’m so anxiously awaiting.

Quiet Period

My last post was April 21. Today is May 31. I apologize for the apparent lack of respect for my readers. A lot has happened since my last post. Most of it you wouldn’t care about. That is, for me, the exciting part. There aren’t any ghastly, life-changing or interesting medical situations to report. When you’re a cancer survivor that’s what you hope for — mundane, just-like-everyone-else days without needle sticks, blood draws and face time with people in white coats. I hope you’ll respect that I just needed some time to forget about medical things like making co-payments, filling prescriptions and lining up tests and procedures. Thanks be to God, I am now winding down my participation in the ASSURE clinical trial (end of 7th of 9 rounds) and my scans are on an every 6-month schedule. The down time has been good for me and for my family. It has felt good to put down the moments of sheer terror and replace them with a few hours of medical boredom. Medical boredom would suit the hell out of me for the remainder of what I plan to be a long, long life. I hope God has that same plan for me. I love it when a plan comes together.

During this down time, I have remained focused on getting back into shape. I still follow a mostly vegetarian diet and Jill and I have joined our fantastic new YMCA and have participated in a number of exercise classes. Yoga, spin, body pump, Zumba and turbo kick classes have been interesting and exhausting. My weight is down about 25 pounds from where I began on 12/31/09 and it is holding steady and dropping very slowly (which is what my nutritionist and my nephrologist want).

I was in the office one day and my phone rang. My friend and coffee guru, John Woodward, was on the other end of the line and he said, “I’ve got something to tell you that I think you’ll be interested in.” That phone call has spawned a new hobby, a big, after-cancer physical challenge and another thing for all my sister-wives at work (Jill, Marquette, Helena and Callie) to nag me about. I’m training for a once-in-a-lifetime two-week river adventure that will begin on my father’s birthday this fall. I, along with 30-ish other people will be paddling from Columbus to the Gulf of Mexico in sea kayaks. We’ll go down the Chattahoochee River, through 2 sets of locks into the Apalachicola River and right out into the Gulf of Mexico. This is exactly what I needed to provide me with a physical goal to really get back into shape.

I accepted the challenge before I had ever even set foot in a kayak. I have now been out 4 times and am getting accustomed to paddling and being inside one of these sleek, tippy boats. In case you didn’t know, the Chattahoochee Paddling Club is a well oiled machine. The club has 40 or 50 members and has a great Yahoo Groups website, a full calendar and holds interesting meetings that teach people about the wonders of kayaking. Here is a link to the club’s website. You can go there and see what is available for people with an interest in paddling.

http://groups.yahoo.com/group/ChattahoocheePaddlingClub/

Last Saturday, the club sponsored a Strokes class, which was a 4-hour training session on the various strokes a kayaker needs to have in his/her arsenal. This Saturday is the Safety/Rescue class where the all-important means to rescue oneself will be taught — and I hope learned. The people whom I’ve met are some of the nicest people I’ve ever met. Having them in my life has added a wonderful new dimension to a life already busting at the seams with good friends. I’m looking forward to the trip and the opportunity to showcase some of the wonders of the river system in Columbus and the Valley magazine. More later on this subject.

One of the added benefits of this trip will be an opportunity to do some bonding with a new acquaintance, Gary Bayer, who is also the husband of Jill’s cousin, Jane Bayer. Jane is newly employed at the National Infantry Museum and Gary is a clinical psychologist. They recently moved here from Memphis and are busy putting their roots back into Chattahoochee Valley soil. Gary is an interesting guy and is all about a trip like this. He is a resourceful adventurer and is a lot of fun to be around. I know we’re going to have a ball on this trip. I also have found a mobile battery for my cpap machine, so it looks like the rest of the campers on the trip will be able to hear a snake sneaking up on them.

Again, thanks for bearing with me during a brief, but much-needed quiet time. There will be a lot to tell as I prepare my mind and body for a 265-mile paddling adventure. I’ll be blogging my way along the trip. Should make for some interesting blog posts. The best news is that there will also be some incredible photography to go along with my writings, because local photographer, Mike Culpepper, is also planning to go along for most, if not all, of the trip! I can’t wait to see what his accomplished, photographic eyes will see.