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!

December: was given the news, had a lung operation and a biopsy.

January – February – March:  started and maintained chemo. saw some shrinkage.

April: chemo quit working. Switched over to the trial immunotherapy drug called Nivolumab. Cancer grew some during this transition.

May – June: had a few infusions of the trial drug, and it is simply not doing the job. Cancer has progressed and my left chest cavity is a bit of a mess. I’ve been in extreme pain, lost weight, and unable to get much done b/c I’ve been jacked up on Morphine.

THIS WEEK: So we made a tough decision to leave the trial and start radiation. It should give me some relief within a week or so and allow us to come up with Plan D. I have been miserable, and something has to change. I have my second radiation treatment today, it’s a short 15 minute procedure. Painless. Easy. The pics shows where they are concentrating on with the radiation.

Again, I’ve got some other stuff to post. But had to get this to all you loving folks out there inquiring! Please keep the phone calls to a minimum, I’m having a hard time talking. I’m very short of breath and it just int east to rap on the phone. More to come this week…

We are working hard on assassinating the dictator that has taken over these regions!!

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!

Take a look at her beautiful work here: http://www.timmerdesigns.com

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.

So the gang over at UNCW got word of the Mojo blog.  They did a feature on their blog about this blog, and now I’m blogging about that blog. Is there a term for this? Maybe we can coin one.

Many thanks to them, and to all my Seahawk friends out there for all your support.

Check  it out: http://uncwalumni.blogspot.com/

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.