In regards to yesterday’s post, I want to clear up what I believe I have made pretty obvious throughout all my posts – I appreciate all forms of support, prayers, and well wishes, including ‘Stay strong’. I also failed to mention one of my favorite recent text exchanges. My sister, Cindy, checks in on me pretty regularly. She checked in on Sunday and I was not having the best day. If somebody is kind enough to text me and ask me how I’m doing, I respond with real time, straight up info. She gave the perfect response to my complaining. “Sorry about today. Each day has a new beginning. Hopefully tomorrow will be a better day”. And it was. Every day since Sunday has been a better day – at least from a physical perspective. She brought that outlook to mind when it wasn’t clear to me that the next day would start out fresh and each new day brings a fresh opportunity. Thanks for that Cindy! That’s why I always thank you all for your messages. You never know when one of them is going to make a difference. I’ve learned how much a quick text, email or phone call can mean.
So you’re going to get a really raw ‘stream of the next 24 hours, or I suppose it will be the previous 24 hours when I post this.’ I’m writing this as I feel it, it helps me more than you know.
My daughter Allie paid me the biggest compliment ever. She told me that she liked my last post. She isn’t a reader, she lives my blog real time, sometimes I think it is hard for her to read my posts, I understand. I told her that I write the blog for me. It makes me feel really good that people get something from reading. I hope that one day my story will help somebody with what ever path they may find themselves on. I like being read, I like being shared, it makes me feel like my situation has a chance of making a difference. I might not ever get around to writing a book, but if nothing else, my blog gives me an opportunity to leave a bit of a legacy of what my life is all about. So I really understand why she may not sometimes feel up to reading my entire blog, it’s raw and hits home hard. Having her tell me she liked it – that made me feel good. My friend Megan is big on the little things mattering, no shit, the little things matter!
Yesterday, I went back to the hospital to have acupuncture. I stopped by medical records to see if my scan report was available. I figured why wait? I’m at the hospital and reports are ready. MD Anderson does a great job in making your reports available almost real time. Getting the reports can be a double edge sword. I feel there is more upside. If the news is good, I avoid hours of anticipation. If the news isn’t good, I can be prepared and avoid the awkwardness that accompanies my Doc having to report bad news. Unfortunately, the news is tough. There has been a pretty significant amount of increased tumor activity over the last six weeks. The good news is that my blood work continues to look really good, some increases in secondary markers, but all my enzymes, kidney function and various other critical numbers are good. All overshadowed by new activity, increases in existing activity, new metastatic progression to my pelvic region. None of this is the news we were looking for, but it’s the news we’ve received.
What a timely post of Megan’s story. In a time like this, it’s very easy for me to say to myself – how do Megan & Rock handle adversity. They punch it in the f&^@ing face! That’s what we do – we fight! Warrior up, be a badass!
My UBER driver back to the hotel after my acupuncture was a former MD Nurse. They paid for her education, she worked there for years. She loved it there, but couldn’t take it. It’s a tough job. This driver, Michelle, has had an interesting medical history herself and has been battling chronic disease since she was young. She shared her story. She said something that I also believe; ‘Everybody is going to die, we don’t generally have a choice in how we die, but we have a choice in how we live’. It amazes me the number of times I run into these inspiring people in the least likely of places. Michelle, my uber driver, she was one of those people.
Last night, I canceled dinner with my cousins. I just needed some time to collect my thoughts and not feel like I needed to be engaged. My cousins would have been happy to be there to prop me up, but were very understanding when I told them why I needed to cancel. Laraine and Stewart have been wonderful and set a standard of being there for family in time of need.
Felice made me read my mantra. For those that haven’t read my mantra, You can click on the link below. I wrote it when i was diagnosed and it represents how I moved through the diagnostic phase into the treatment phase and how I must confront my realities. We’ve taken steps forward, we’ve taken steps back.
I believe and often talk about the ebb and flow phenomena. It’s most visible in sports – particularly noticeable in both college football and basketball. Personally, I think it presents really clearly in basketball. The game goes in one direction for a while, then flows back in the other direction for a while- it’s a constant ebb and flow and winning is about being on the right side of the ebb/flow at the end of the game. Same holds true on the golf course, in business, and in life – things just don’t generally work in straight lines. I really need to swing this momentum back in the other direction. It’s time to swing it back. It’s just really damn frustrating.
I’m writing now at 4:45 am. I’m on a major prednisone buzz. I have to do a prednisone protocol prior to doing scans due to a reaction I had to iodine 25 years ago. It’s a precaution against having another reaction, which, while probably highly unlikely, has the potential for being a progressively worse reaction. So I take 150 mg of prednisone over the 13 hours prior to my scans and then have a problem sleeping for at least a couple days. I’m sure that the news I received today isn’t helping me sleep, but I’m definitely riding the prednisone buzz!
We went to see Dr. Wolff and he was surprised that medical records released my report. I explained that it was really the right approach for me. We agree that I’m an educated patient and I know what my situation is. Being able to process the information and come to talk next steps was what worked best for me. I was relieved that Dr. Wolff was prepared with a very specific, detailed action plan and spent considerable amount of time discussing his thoughts. I’m going to start a very aggressive chemo called Folfirinox as soon as possible. It’s a tough drug cocktail – three potent chemos. The Doc says I’m healthy and strong and can handle tough drugs and I need to throw whatever I can to slow this shit down. He says he feels confident that this will help, but there are no guarantees. We’re going to do the treatments in Dayton. It’s a 48 hour infusion. I start at the cancer center for IV drugs for anti nausea and steroids and then they send me home with a pump that drips through my port for the next 48 hours. It either comes with a shoulder pack or fanny pack, so I can remain as active as able to during that 48 hour window, but he warned me that I might not feel so good. We’ll see, Doc has always presented the worst of the side effects and I’ve generally handled the treatments with less toxic reactions than anticipated. Trust me, I’m not under estimating the difficulty of what’s ahead, but there are a lot of success stories out there for this proven protocol. I’ll also be doing monthly infusions to ‘simionize’ my bones to prevent further progression of the metastatic lesion on my left side. It’s small and Doc is hopeful that the chemo will attack that. Still we need to protect the bones from further progression. After the 48 hours, I’m off for 10 days and will likely feel a little yuck for a good portion of that 10 days. I’ll have to maintain a warrior attitude and will look for this community to prop me up! After two treatments, I’ll go back to Houston, likely in early December. We’re going to do a new tissue biopsy then to run new tests for potential immunotherapy options. I’m glad that my doc had a plan ready to execute with thoughts of the next steps in the event that we need next steps. The Doc agreed that it is normal that I have heightened concerns about my situation, but that it isn’t time to sweat. I really have no choice, I have to have faith that this will work. We’ll need your prayers, your support and your positive energy. This is definitely a tough path, but Dorothy didn’t have an easy path to Oz.
So since I’m out of the trial, we were able to catch an early flight back and hope to feel well enough to get to The Dayton Flyer’s game tonight. Go Flyers. Looking forward to another exciting season with our UD Flyers.
Thank you all for your continued support. Your text messages, emails and phone calls are so helpful to my psyche. It’s the little things.
I’ll be in touch, Mike
#ShaneStrong #cancersucks #BooCancer