WHERE, WHAT, HOW?

2 months and 8 days since my last update. I am so sorry for that long of a delay between updates.

I have much to tell you but for sake of keeping this interesting-I will try to just go over the highlights between this post and the last one.

The easiest place to start would be How am I doing? What’s the latest on the disease from my doctors? I will get to that in a bit.

The latest on the disease is I had an MRI in mid December and this was the post chemo and radiation therapy to establish a new baseline. Per the doctor-everything looked about normal and as they expected, which basically means nothing great but nothing bad either.

Marcy, Matthew and I spent Thanksgiving with her family. First with her mother (Peggy’s) side along with Marcy’s sisters (Hillary and Jodi) and brother in law - Darin. Much festivities were had, much laughter and merriment along with many wonderful memories. And then with Marcy’s dad (Gary) and the same aforementioned sisters and brother-in-law. Also much merriment, laughter and wonderful memories were both had and enjoyed.

Chemo for the month of November wasn’t anything to mention because honestly, it ended on the 18th of November and I didn’t have to start chemotherapy back up until a month later, but I digress.

I’ve now been in my 2nd round and 3rd month of chemotherapy since December 18th. Which consists of getting blood work done at least twice each month to make sure blood count numbers look okay from the doctor’s perspective and that I will be receptive to the drug instead of it hurting me. Once the blood work comes back and the chemo is ordered I then coordinate with a specialty pharmacy that delivers the chemo to my house with no signature required which is great and very convenient. December’s chemo treatment was okay, not too rough or bad. January’s was awful, a higher dosage than December and each of the 5 days plus an additional 5 days I was sick the morning after. Thankfully I was able to meet with the doctor a few weeks ago and they approved a lower dosage for this month which I’m starting tonight.

I’ve also been working on applying for disability with the VA and social security. The short version is I’ve had 1 virtual appointment after meeting with a VA rep and I have another virtual appointment in March, which hopefully I will remember to post another update before then.

I had a virtual appointment with a doctor at the Mayo Clinic in Rochester, MN and both Marcy and I were able to get some really good information. Basically what we were told was that we’re getting great treatments here from what they see on all the images and records but should anything change to let them know and they would love to look into it and help with more access to clinical trials.- which I have to say thank you again to Jessica at the Brain Tumor Network for always helping us with that, whether it’s answering questions or getting documents or images sent somewhere she has been truly invaluable with that.

Lastly, I have been back to work at my IT job since the middle of December with the hopes of being able to get approved for disability whether through the VA or Social Security in the hopes of being able to pursue ordination as a priest in The Protestant Episcopal Church in the United States of America and spend the time I have left both with my family and pursuing ordination which I’m very passionate about. My wonderful rector, Fr. Jay, is constantly checking in, asking how Marcy and I are doing and is always, without fail, able to make me cry with his stoic evangelism every Sunday that I swear sometimes knocks me back like I’m nothing.

I also have to say that as of February 15th, I CAN DRIVE AGAIN!!! It’s been 6 months and man it feels so good to be able to drive and go places again! Speaking of February 15th which is post Valentine’s Day, Marcy and I took some time to go on a late Valentine’s Day date at MDRD at the Amway Grand Hotel in Grand Rapids and booked a room for the night so no driving had to take place that night. Here’s a few pictures we took of that night while at IDC and in MDRD.

Speaking of driving, I have to say THANK YOU to Marcy, Nate, Bob, Bobbie, Jay, Matt Scott, Jeremy, Mary, and Alyce and everyone who volunteered and didn’t mind driving me places while I was on driving restrictions.

Before I go any further, I’d like to highlight something else while I think of it. On February 13th in the evening, a man whom I had grown to enjoy the content that he put out on his YouTube channel - called Thick44 - along with a few others who formed a gaming community called Neebs Gaming passed away from complications of his glioblastoma. Thick44’s gofund me can be found here at shorturl.at/zAM78 or just google Thick44 gofundme.

Thank you all for staying with me on this journey so far, thank you all for all the well-wishes and prayers. And don’t forget, whether you’re here to get updates about me and my cancer journey or you need some help-Hope is Mandatory. Period.