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
Review and Radiation. Kinda sounds like an R.E.M. song. Not sure why. Just does. Here’s what’s going on. I have some other stuff to post, fun things, sappy things etc, but want to get this out there for all to know.
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…
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!
Outside of wearing a watch, I’ve never been much of a jewelry guy. No necklaces or rings or bracelets. I did have that herringbone gold in 10th grade but we’re not gonna count that. So when my ol’ friend Mary McCall Timmer said she wanted to make me a a custom MW piece, I wasn’t exactly sure what to think. But we talked it through, and a piece for my key chain seemed like something I would use and have with me most of the time. I was shocked when this bad ass piece showed up at my house. Super cool and one of a kind! Huge thanks to you Mary, I’ve got my mojo with me at all times! And didn’t need an herringbone necklace to do it. Click the pic to get a larger image…
Take a look at her beautiful work here: http://www.timmerdesigns.com
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.
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/
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.