Columbus and the Valley

Looks Like A Go

This morning I reported early for the 9:30 stress echo test. I had just sat down in the waiting room and plugged in my iPad and Matt Baum popped his head out of the door to the treatment area and called my name out like I was being introduced for a comedy roast. Mmiiikkeee Vvennabbllee! Turns out his cheery demeanor and his cheerleading abilities would be important to me once they introduced me to the treadmill.

I haven’t ever had one of these tests, so this was all new ground for me. Here’s how it went: First, you lie down on a hospital bed and they get a resting heart rate and blood pressure. Then I was asked to stand up and Matt went at a double handful of spots on my ridiculously hairy chest with a safety razor. After he created a pile of hair — enough to build a complete toupee for Howie Mandel — he filled those freshly shaved gaps with stickers that contain contact points for the wires he plugged in.

By the way, Matt Baum went to Shaw High School in Columbus! I told him that I had a surprise for him when the test was over (if I lived through it). He was interested in what was going on with the Chattahoochee and I whipped out my iPad after my test and wowed him with videos of the Thursday and Friday rafters from last week. He was stunned. Wants to come back and see it for himself.

So, back to the stress echo. Once I was wired up, another technician came into the room and did a cardiac ultrasound. That wasn’t much, except for the goo that was left on my skin. Once that part was over, I was asked to stand up onto the treadmill. Matt explained that he would be asking me questions about how I feel during the test. I was asked to tell him about how much exertion I was feeling (on a scale from 6-20) and how I felt I was breathing.

Then they turned it on and I started walking. The plan is to push you to your maximum heart rate and really get the heart pumping. He predicted my maximum heart rate would be about 161 beats per minute. I made it to 162 before I felt like I just couldn’t breathe. Then I was plopped back down on the bed and underwent another ultrasound of the heart.

I think I must have done well because they were both complimentary of how things went. Dr. Michael Morse will review the stress echo study tomorrow and my insurance will be checked and if all looks well, we should be good to go early next week.

This afternoon, we met with Dr. Morse. He just left the John B. Amos Cancer Center last week for a speech he made to caregivers there. He is exceedingly knowledgeable about certain types of cancer, including melanoma. Melanoma is an immune system cancer, as is renal cell cancer.

He answered all of our questions. We’ll start the therapy on Tuesday. We’ll check in around 1 p.m. and do some paperwork and some labs. They’ll settle us into the intensive care step-down room (where Jill will be allowed to stay, too) and they’ll put in a picc (peripherally inserted central catheter) line. The picc line will deliver the HD-IL2 straight to my heart, where it’ll disperse on a mission to wake up and piss off natural killer cells so they can seek out and kill this cancer.

Here is the plan: We will likely come back home on Sunday, September 9. After a few days to recover, we’ll report back to Duke on Monday, September 17 for five more days of HD-IL2 infusions. Then back home on or about Saturday, September 22. That will constitute round number one of a possible three or four rounds. They will continue infusions until either A) I throw in the towel, or B) I’m in danger of developing life-threatening complications or C) I become delirious or exhibit bizarre hallucinations. The goal is to get as many as 14 doses per five-day stay.

I like Dr. Michael Morse a lot. He is extremely bright and is easy to talk to. He says they’ll exact an agressive application of this therapy, but that they’ll stop short of forcing me into kidney failure or something worse. Now that I think about this, this therapy is much like that stress test. Go until you can’t go any more is the plan.

They will do CT scans about a month after the start of the HD-IL2 therapy. If there is tumor shrinkage, round two will be ordered. If there is stability, round 2 will be ordered. If the tumors are larger, I’ll be declared an HD-IL2 non-responder and I’ll immediately go on one of the TKI therapies and prepare for surgery to remove the left adrenal gland and some sort of cryotherapy (or other ablation treatment) to deal with the two small tumors in Strainer.

We’ll leave to come back home tomorrow morning and we can’t wait to see friends, family and co-workers!

 

Oprah Would Be Proud

Because of the precarious condition of my back, I declined a generous offer to fill a spot yesterday in one of the rafts that navigated the newly-created whitewater course on the Chattahoochee. Jill made the trip and I stood on the sidelines and watched. I knew that I had made the right decision at exactly the instant I saw her leave the rubber rail of the raft and sail up and into the boiling cauldron that is the hole named “Cut Bait.”

After a few anxious moments I saw her head pop up and I knew someone would scoop her up and bring her safely back to me. Jill and Oprah Winfrey have something in common. Neither of them particularly likes to get their hair wet. Oprah would have been proud. Jill came out of the Hooch looking like a drowned rat and she will have stories to tell for the rest of her life about the day she ran the Chattahoochee at 9,000 cubic feet per second. Folks, that is some big ass water!

We pull out in the morning to begin the eight-hour drive to Durham, NC to begin the next chapter of my journey with cancer. My itinerary includes meetings with medical oncologist, Dr. Dan George and Dr. Michael Morse, who runs Duke’s high-dose interleukin-2 program. I’m fortunate that they’re going to be able to use all the recent scans from M. D. Anderson Cancer Center. To supplement those scans, I’ll have some lab work and pulmonary function testing (stress echo) to determine my ability to withstand the difficult HD-IL2 treatment regimen.

The first doctor visit is on Monday and the stress test and the visit with Dr. Morse are scheduled for Tuesday. We should be able to hit the road to come back home on Wednesday morning. If HD-IL2 will work for me, we’ll turn back around and head back up there to begin the treatment on either Labor Day or the day after. After seven days in intensive care, we’ll make the difficult trek back home for two weeks for me to try to bounce back from the therapy. Then we’ll do it all again. That is one round. Depending on how I fare and how I respond, I’ll have to do multiple rounds of this nasty therapy. Four rounds could take up to a year from start to finish. But, this is the only therapy that can offer me a cure. And, only in a very small percentage of cases.

Jill and I appreciate the continued good wishes and all the love we’ve received from our family, our friends and this remarkable community. If you add all the readers of this blog around the world, we aren’t tackling this difficult therapy alone. There is a veritable army that will go with us. I am going to attempt to blog my way through this entire treatment. With the very strong likelihood that there will some portion of the next few weeks when I’ll be physically or mentally unable to write. Because I want to capture all of this to be able to leave more breadcrumbs for those behind me to follow, I’ll ask Jill to either video some things or to type for me. Regardless of what happens, this is going to be a difficult, but interesting time in our lives.

I hope you’ll allow me a shameless plug for our business here. We have, at considerable expense, launched free iOS, Android and web versions of both Columbus and the Valley and Valley Parent magazines. As we begin to offer free, interesting local content in these digital editions as a value-added complement to our 21-year-old print magazines, we will be an even better value to our advertisers. When one of our account executives makes contact with you, please say “yes, I want to reach our potential customers regardless of where they are. At the beach, at home or in the carpool line.”

Here’s how to access all those magazine versions. Please download them, share them with your friends and let us know what you think.

Columbus and the Valley

Web: http://content.yudu.com/A1xfua/CVMAug12/

iOS App: itms://itunes.apple.com/us/app/columbus-valley-magazine/id548657943?mt=8

Android App: https://play.google.com/store/apps/details?id=air.com.yudu.ReaderAIR3180494&feature=search_result#?t=W251bGwsMSwxLDEsImFpci5jb20ueXVkdS5SZWFkZXJBSVIzMTgwNDk0Il0.

Valley Parent

Web: http://content.yudu.com/A1xs58/VPAug12/

iOS: itms://itunes.apple.com/us/app/valley-parent-magazine/id548646604?mt=8

Android: https://play.google.com/store/apps/details?id=air.com.yudu.ReaderAIR3240394&feature=more_from_developer#?t=W251bGwsMSwxLDEwMiwiYWlyLmNvbS55dWR1LlJlYWRlckFJUjMyNDAzOTQiXQ..

 

Swing Weight

October 23 is an important day for me. Firstly, it is my fantastic father’s birthday, and it is a big one. Although I’ve said it before — he’s still a 35-year-old in my mind’s eye. But I told my mom that if she’s planning a birthday party for dad, she better plan to have it before his birthday, because on that day, I’ll be embarking on the most physical challenge of my life. A big bunch of us will be shoving off from Rotary Park on the morning of the 23rd of October in kayaks on a mission to paddle our way to the Gulf of Mexico. More about that later…

I got into a kayak for the first time on the evening of April 28th, 2010. Keep in mind, this is after I had committed to do this two-week kayak expedition in October. I am not a great swimmer (I could save myself in a pinch), I’m epically claustrophobic and I don’t have great balance (probably because I’m a little top-heavy). These three liabilities would seem to fly in the face of reason for choosing kayaking as an activity. I’ve chosen to do this as an visible, physical symbol of my intentions of beating cancer. I’m paddling, Jill and I are regulars at the new John Thayer YMCA, I’m eating right and I’ve learned how to safely execute a wet exit from a overturned kayak.

Let me tell what I have learned about kayaking. First of all, it is a blast! Imagine floating along under the light of a full moon with a group of friends. It is quiet, except for the sounds of wildlife and the sultry slurp of paddle strokes. The best way to see nature is in a kayak. The other thing you need to know is that there are many, many decisions to make if you want to take up the hobby. Here are a few: sit-on-top or sit-in kayak, length of the kayak, type of personal flotation device, what kind of paddling you’ll be doing, types of paddling clothing to consider and ways to transport your boat to the ramp — just to name a few. The one big decision I didn’t mention here is your choice of paddle. On a trip like the one I’ll be going on this fall, the choice of a paddle will likely be my most critical decision. Here’s why: An active sea kayaker will execute between 2,000 and 4,000 strokes per hour. If a paddler puts in an 8-hour paddling day, those numbers will yield a total of 16,000 – 32,000 strokes.

There are paddles make with wood, aluminum or fiberglass that can weigh up to 40 ounces. Then, there are those gorgeous, sleek, perfectly weighted paddles made out of carbon fiber. The Epic Relaxed Touring paddle weighs in at an incredible 22 ounces. Imagine the difference between swinging 22 ounces and hefting 40 ounces over the course of an 8-hour paddling day in the midst of a two-week, 265-mile river adventure! The paddle, which I don’t yet own, will be the subject of future posts to this blog. By the way, there are even more decisions to be made just concerning the paddle. Straight shaft or bent, what weight, what material and what length?

My point here is to do your research. Access the Chattahoochee Paddling Club’s Yahoo Group page: http://groups.yahoo.com/group/ChattahoocheePaddlingClub/ and request to join so you can see the high level at which local paddlers communicate and recreate with each other. There is a lot more coming on this blog at we approach our departure date in October. Come back often!

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.