I’ve used this term a few times lately, its been very relevant to some situations that have surrounded my treatment and transition to Duke. I’ll give ya’ll the nutshell version and maybe you’ll understand why!

So I had a good initial meeting with Dr. Ready, the oncologist at Duke. He had me come in the following week to get some screening and preliminary stuff done before getting the trial started. And, had me go get some blood. My hemoglobin was way low. I went to UNC and got two pints. A bit of a nerving experience. But we got it done. That was on a Thursday. On Monday, I woke up to my right clavicle area swollen and very sore. Right near where my port tube meets the artery it’s connected to. I thought the transfusion had irritated it. We’ll come back to this.

That aint my blood.

Few days later, after a number of phone calls and emails, I got my appointment to get my screening done. EKG, blood work and a CT scan from top of my head to my pelvis. This turned out to be a LOOOOOOOOONG day. Most of them are in the hospital. That blood transfusion went from 11-6pm. But we got it done. EKG fine. Blood fine for the most part. CT scan not so good. Dr Ready called early Friday morning to tell me I have  blood clot in my left lung and to get my tail to the hospital ASAP to get a blood thinner shot. So another day at the hospital. And it came with a kicker. I have to give myself 2 Lovenox shots EVERY day. For life.  Not exactly what I was wanting to hear. But again, we got it done, and I’m handling the shots ok. Needles are only about 1/2 inch long. Goes in your belly fat (which I have very little of), kinda like a diabetes shot.

Because of the blood clot, my treatment was delayed from the 13th to the 24th. Serenity Now. Something to do with the blood thinner and the trial drugs not jiving right. This is extremely frustrating…more waiting while this cancer keeps growing in my body. I mentioned the swollen area earlier that I thought may have been an infection from the blood transfusion. Wrong. Cancer in my lymph nodes on that right side. Serenity Now. Up to this point, everything has been confined to my left side. Now it’s made it’s way to my right. Super sucks. Especily since we don’t start treatment until the

POSITIVE NOTES – Gotta keep the good MOJO energy in check, so here are some nice highlights from the last few weeks.

Fundraisers – I received a nice check from the Eddy Haneman fishing tourney. Thanks to everyone that showed up for the luncheon and to Stacy Wester and company for making this happen. It brought me to tears. An interview I did actually ended up on Time Warner Cable. We famous. Joe’s Bucket Bash – speaking of fundraisers, who’s coming? Huge event at Captain Bill’s over off Market St. Volleyball, corn hole, music, booze, auction with some great items from local shops and restaurants etc. Event is August 29th at 11am. I will be there and will be playing corn hole with my buddy JC. Bring your best. It’s GAME ON! https://www.facebook.com/joesbucketbash

Care packages  – I continue to receive some great gifts from all over the country. These things certainly make me feel better and loved and I can’t thank you all enough for all the cool goodies.

General kindness – it continues to blow my mind how caring and thoughtful folks have been. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. 

*And yes, if things get too wacko, Serenity Now has lost is power, and I feel like I’m about to blow a gasket, I will switch over to Hoochie Mama as my new relaxation technique…

Had a really nice meeting with my oncologist at UNC yesterday, it was probably one of the more calm and thorough meetings we’ve had in a while. I went in with low expectations, I have found that this is a better mental route at the hospital. Things just never go as planned. This way of thinking worked, as we have action next week.

I’m getting a nerve block on Monday to alleviate this pain in my left lower back. It’s just not going away. It’s an outpatient procedure, gonna stick some big needles in my spine and numb some areas. Should last about 3 weeks. I’m actually really looking forward to getting this done.

More importantly, I am meeting with Dr. Ready next Thursday at Duke.There is a trial there that I have a good chance at qualifying for. It’s a kidney cancer drug that is seeing very positive results in treating other cancers. Will give more data on this as I have more.

Got a prescription to Marinol, a marijuana based pill that we are hoping will help my appetite. I’m a friggin wafer right now and need a booster for eating. Hope this works.

Thanks again to all of you for your support. The MOJO has been coming in heavy lately and every bit helps.

Have a great weekend, friends and family. Love you all. ~SS

This Thursday we meet with my oncologist and will hopefully get some ideas for PLAN D. No clue if we will be tapping in to a new trial or dipping back into more chemo. NO CLUE. But I hope to have some news for everyone by end of week.

I will do a different post for this, but I am incredibly lucky to have been picked for the Joe’s Bucket Bash recipient in August at Captain Bills. Volleyball, corn hole tournaments, auction of local goodies…all helping fund my medical bills. I was teared up when I was offered this opportunity. There are some VERY KIND people in this world. Thanks to Gabe and John for getting me in the mix. Please like this page and get a team together and/or come out to the event and drink some cold beverages and make  a bid on some of the cool stuff. https://www.facebook.com/joesbucketbash

Pops and I on Bogue Inlet Pier…we used to sleigh the croaker there!

Feeling a bit better today, I’m sleeping better and I THINK the PD1-Nivolumab is starting to work a bit. Had second infusion of it last week. The law firm of Spivey & Bernie sat in with me, we had a good time in our own private suite. My eyes have gone way bad in the last few months and I just got some new Ray Ban scrips, so I’m sporting those whenever I’m on my phone or iPad. We had some four eyed fun while I was getting my drip, as you can see.

When the Nivolumab kicks in, I should be in a lot better shape. Why am I in pain? If you put your fore finger on your sternum with you right hand, and draw a line under your arm to the bottom of your left shoulder blade, you’ve basically covered where the mess has grown inside me. It’s hitting some nerves in my ribs in my side and back. So at times it hurts to breathe, burp, hiccup, sneeze, cough or use any muscles to do something like get up out of a chair. Managing the right amount of pain medicine has been tough, and it will all not matter once the trial drug starts doing it’s thing. My doc said it could take a few more weeks. Everyone responds differently to it. So it’s a waiting game.

Thanks again to everyone. I’ve heard from some folks this past week with some encouraging stories of defeating cancer. These are a big help for me. I mailed a bunch of MW shirts this past few weeks, big thanks to everyone for your support and purchases!

PD1 treatment update:  So I’m 9 days into my first treatment and I haven’t really felt any change, it’s actually been quite the opposite. The cancer has grown a bit and my chest and back have been in some pain. BUT, it is standard for the PD1 to start working about two weeks in. So this is no surprise. I have my second infusion this coming Thursday and the docs have said that this will be when some relief will start. So, I’m ready to get in there and make it happen. The port recovery has been fairly painless. I can hardly tell it’s there as I type this and it was smooth going last week. Much better when getting blood taken and with the drip. Glad I got it, so far.

Will update everyone again after this next treatment. Should be feeling better by the end of next weekend. Ready for it.

Family infusion fun!

Getting goofy in Mebane, NC

A while back I said I was thrown a curve ball. This entire scenario that we’ve found ourselves was one mean pitch back on December 1. And now we’ve been thrown another pitch. This one was a changeup (click to read what type of pitch this is in baseball). Here’s why I’m categorizing it as that: Went in for my 6th infusion yesterday, and to have my port put into my chest – which allows for an easier time getting treatments. No more IV’s and tearing up my veins. Had the port put in early, then went to go talk to my doc. I’ve been having some back pain and general discomfort on my left side, and it has progressively been getting worse, especially the last week. Told this to my oncologist, who had me go take an unscheduled CT scan. Radiology came back, and the cancer has spread a bit into the back of my chest cavity. The current chemo has quit working. We’ve been thrown a changeup, one we were not expecting quite this early in the game. Thought the pemetrexed may be what we were doing for the next few months at least, but not so. So we cancelled the chemo, and I’m now due back in there next Thursday.

We are going to respond to this “changeup” by taking a swing with the PD1 immunotherapy drug called Nivolumab. It’s made by Bristol Myers and is the trial drug I qualified for a while back. It’s working very well and proving to fight many types of cancer. It has it’s own side effects, but should not be as bad as chemo. Frankly, I’m very excited to get going on this treatment and confident it’s going to make a big change for the better. We didn’t start with this b/c I got randomly selected to start with traditional chemo.

That’s the latest. I will have more next week. Keep the MOJO flowin’ folks. For me. Your family. Your friends. Whoever is in need of some good juju, vibes, prayers, support etc. I’m gonna hit a home run with this new treatment and need your encouragement through it all. Big hugs out to everyone. Batter up! ~SS

Luckily they gave me the hair net so my hair would not fall onto my cheese slice or anyone elses grub.

Big change in my routine yesterday was the omission of the primary toxic drug called Carboplatin. Done with that gnarly stuff. Now taking Pemetrexed only. Should not be be feeling so weak or sick in coming weeks as a result. We’ll stick to this until it quits working, and will then switch over to the PD1 immunotherapy drug. Could be 6 weeks. Could be a year. Just gotta wait and see. I also committed to having a port installed into my chest in 3 weeks to make these infusions a bit easier. Cut out all the IV mess – sore veins, bruised arms, etc. More on that in a few weeks.

These fine gentlemen joined me yesterday. Larry and Greg are long-time friends from college and we had some fun cutting up with the medical team yesterday. Lots of laughs. Grande thanks to these amigos for spending the entire day with me…scan, bloodwork, visit with the oncologist, infusion. The entire bit. Was nice to be able to eat lunch outside too, this sunshine does not suck.

Larry, thanks for skipping the Wolfpack red you usually wear and sporting the TarHeel blue. We know this was not easy.

Even Larrys daughter and her classmates got into the mix yesterday. Some southern MW love from a Charleston field trip!

I’ve got a good story about the shirt I’m wearing in the photo above. Will explain that in my next post. Hope everyone has a great weekend. Thanks again to all you Warriors for all the support, gifts, texts, calls, hugs, love and general good Mojo.

A nice fella sat across from us that had a chemo port installed in his chest and he may have sold me on getting one myself. He’s had it 10 months and was very pleased. No painful IV installs, which has been a big problem for me. Quick and easy hook up to the chemo drip machine. The port will be a bit of a display while in the sun with a shirt off, but my white, skinny bird-chest has been that for years anyway, so big deal right?

Another highlight was the debut of some sweet new bobos that Jimmy surprised me with me a few weeks ago. My Warrior Coxswain Tarheel blue kicks were a big hit. Made by a lacrosse company. I’m digging them. I’m sure you are too.                   Thanks Jimmy!

I’ll have a link up this weekend to buy the MW shirts online, lots of you asking about that. $30 each and that will include shipping. Again, thanks for all your support and encouragement. Have a happy Easter weekend, I’m off to grab my Bro at the airport.

Minutes after saying goodbye to the Carboplatin. Thanks for making the trip, fellas!

You know you want some.

Sweet potato veggie burger for me. Dave had the real thing. And a large fry at Al’s is LARGE.

My beer intake has been almost non-existent over the last 4 months. This one tasted gooooood. Funny people watching on Franklin St. too.

Now on to the shrinkage. No, it’s not the George Constanza kind I’m talking about here (see the 2:35 mark of the video). I can assure you I have not been any cold pools recently. Where I have been is in a CT (computed tomography) scanner, which takes a detailed pic of your insides. With the help of some iodine in the blood, the cancer cells show up better. We got a good luck at the biggest tumor that’s in my chest yesterday before this 3rd infusion, and it has shrunk by about two centimeters. My body is reacting well to the two chemo drugs. We’re all very happy about this.

So here’s what’s up next: I will have one more infusion that includes Carboplatin. It’s the stronger of the two drugs that are part of my drip and the one that make me feel like complete doodoo for about a week. We will then go to just Pemetrexed, the second of the two in my drip, and do another two rounds with only that. Side effects not near as severe. More good news. Assuming things continue to shrink, we’ll stick to this for a bit. Tons of folks have asked me “how many times do yo have to do this?”. As of yesterday, there is no answer to that. I could be doing this for a year…some as a preventative measure. Not really excited about that. But if it’s what we gotta do, it’s what we gotta do!

Thanks to Jimmy and Brooke for sitting in, and bringing some tasty treats, and keeping the mullet jokes to a minimum (I’ve known these two since the mid 80’s). They made the few hours in the poison pit good fun and I cherish my friendship with them like I do a lot of you. Thanks also to some folks to have helped with my diet. Too many to name. But lots of folks with good advice on foods, websites, vitamins etc. You know who you are. Every little bit helps.

Lastly, the Quintiles marathon is next weekend. There is a MOJO WARRIORS element into the 1 mile and 5k on Saturday and there and many of my friends and relatives have volunteered. THANK YOU! Folks traveling to do this even. I’m pumped to see everyone. I’ll be doing both, but will likely be on my beach cruiser on the 5k. You can still sign up to walk/run, I think they are good on volunteers. So come join us Saturday at 3. The new shirts will be available there, and then online later. To Register: http://www.wrightsvillebeachmarathon.com/ **Enter Promotion Code MOJO at Registration**

Heels high atop the ceiling…

These things are made by CLIF and have become a staple at the hospital…

Wacky Weather. Everyone is dealing with it (outside of you Southwesterners). It’s colder in Chapel Hill right now than it is in Anchorage, Alaska. Wha? For those of you out there that think this is normal or is just a pattern, it’s not. But I’m staying off my climate change soapbox today. This cold simply is not for me. I’ve lost about 8 lbs since this started, and ya’ll know I don’t have much to spare. Hunkered down till things get back above 45. It’s gonna be bacon and milkshakes and fries when this is all over.

A trip to Hansbrough Indoor stadium (also known as Cameron) for college sports best rivalry game – UNC vs Duke hoops. I mustered up enough energy, and courage, a few nights ago to take up an offer from my longtime friend, and old roommate, Daniel. Last time we did this was 1996. Outside of the final score, could not have picked a better game to go to. An overtime (free basketball as some of us like to call it) thriller. I brought about as much mojo and one dude can bring, particularly sending it down to the Heels in the second half. But then something weird happened with 4 minutes remaining. It was like a force field was blocking the good Heel juju and mojo from the court. I’m not sure who was responsible for this, but  have a good idea. LAETTNER. He was in the building. He sold his soul to the Devils Mojo back in 1992 when he hit that prayer vs. Kentucky. He must have some type of super power that he can use every decade or so to make miracles happen in his favor. That’s my take. Damnit Laettner!! Huge thanks to Daniel for taking me, and for the sweet DEAN shirt. Was a very cool tribute to Coach Smith prior to the game and I was happy to be a part of it.

Two down…round 2 in “my chair”. Was back at it yesterday at the Lineberger Center, this time joined by two other long time friends, Robert and Marc. They joined in on the fun from beginning to end and it was great having them there. We were twice asked if we were all brothers, as we were decked in black and all use the same hair stylist. Lots of goofy comments and jokes whenever this happens. We had the docs an nurses laughing/smiling, which lightened things up. College buddy Pat showed up just as I was finishing, and I was so anxious to leave I forgot to get a pic with him too. Bernie, RG and Pat Ho – big thanks for the support fellas!  These guys, like many others, have been amazing since day 1 and I can’t thank them enough.

Quick medical notes: My tumor is not near as painful, which means the chemo is working and it has reduced in size. This is good. I got a drip of nausea medicine that will hopefully have me feeling a bit better this time. My white blood cell count is already low, which is natural, especially with the Carboplatin chemo I am receiving. Will get a CT scan in 3 weeks to get a new measurement of that tumor and see if the other little spots are hopefully gone. March 12 is round 3. Game On. 

Three brothers??

Moment of silence for Coach Smith

Slim and the Ultimate Warrior