If you don’t know this term, watch the video, it’s a quick education on it’s meaning.
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.
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.
…and ironically going to be tapping into a trial drug that is working really well right now on non-smokers.
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
So I’ve discovered that a good way to recover from 3 weeks of radiation is to sit on the beach with family and friends and eat homemade grub and talk about the good ol days and watch kids fly kites and take naps on the couch and look for dolphins on the horizon and sleep in and breathe in the salt air… .that’s where I’ve been and what I’ve been doing. I am sorry for not updating this earlier. Been laying low. I’m feeling a bit better, the radiation reduced my pain, and I believe the progression of the cancer, which is what we wanted it to do. But, I have NO energy. One flight of stairs and I’m ready to find the couch. Seriously. It sucks. My appetite has been bad b/c of the morphine I’m on all day, every day. I’ve lost a lot of weight. Which all of you know, I don’t need!! But I’m eating more this week and that feels good. It was ugly for a while.
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
Sorry for a bit of a delay in my posting. Been in a bit of pain these past two weeks and have not even had my laptop open.
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!
I’m a lucky dude in many, many ways. One big way is my family and how great they’ve been though all this. Mom just left today, she was here for a week. Had some quality time and just relaxed and caught up. She lives in Cali, so we don’t get to to hang all that often. My DC cousins drove down here a few weeks ago to spend some time before starting my new treatment and are always checking in on me. My brother drove up the week of my new treatment and joined me on my infusion day at the hospital. My aunt and uncle were with me till 1am a month ago in the ER after a blood clot scare. And Dad and JoAnne have been in the mix since the beginning and have been amazing. Just a few examples of how awesome my fam is. They will be a key factor in me beating this.
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.
The Change Up. It’s a pretty darn good movie, but didn’t make too big of a splash at the theaters. Has a quick appearance by my actor buddy Gabe Wood – good work dude! Wish that what this entire post was me rambling about this movie and it’s funny parts but I’ve got other news to report though that involves some change.
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.
Had another CT scan yesterday prior to infusion #5 and results were good. About another 20% reduction in the primary tumor in my chest. We don’t have access to these radiology images, so I took a pic of it on the screen at the office. That’s an unofficial measurement you see on the image. It was over 6 centimeters when this all started, so things are going in the right direction. Keep showin’ us the shrinkage.
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.
Completed a 4th infusion yesterday with the good company of my longtime friends Dave and JC. Dave treated me to a veggie burger at Al’s Burgers on Franklin St. prior, and JC treated me post to a beer after at Top of the Hill. Thanks to these fellas for sitting in and making my day better. Things went smooth for the most part. It was the last time I will have the super toxic Carboplatin drug drip. We’ll taper down to only the Pemetrexed for weeks to come, possibly 52+ or more weeks of them. It’s gonna be a long haul. If the Pem quits working or gets me feeling too sick, we’ll go to the PD1 immunotherapy drug that I spoke of so much weeks back.
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?
First things first. Thanks to UNC for giving every patient in the open area of the chemo floor a TV. Hadn’t really used it the first few times in there, but yesterday spent two hours watching Carolina avenge that awful meltdown to Louisville they had over SuperBowl weekend. Brice had his mojo workin’. GO HEELS.
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.
The last 48 hours have been out of the ordinary, to say the least.
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.