Greetings, friends and family.

If you’re reading this post, it’s because you’re one of the folks who I want to keep in the loop on the outcome of my upcoming surgery. I want to be able to keep you updated on my status while I’m in Miami, and I’ve decided to use my personal blog as the medium for doing so. Updates will be posted here, by either Lisa or myself, all using the same password I shared with you to gain access to this post. This is going to be a one-way means of transmitting data, so I’m going to be disabling comments on any of these posts as well.

I apologize for how very formal this all seems, but we’re under a tremendous amount of cognitive load staying on top of everything we need to do and process about my surgery, and we need to minimize the number of communication threads we have to keep track of through my procedure and recovery.

Where things currently stand

I am heading to Miami this week for a procedure that will, ideally, remove most or all of the tumor and part of my pancreas. My surgical team seems very confident that they will be able to complete this surgery but, if they are not, they will have had a first-hand view of the situation inside of me and will be able to predict more accurately what my next steps will be (most likely some kind of transplant).

The surgery is happening on June 17^th. When I am out of surgery and we know what was done and what my recovery is going to look like Lisa will post that information here.

Many of you have asked if there’s anything you can do to help and, honestly, there really is not. We have arranged for pet and house sitters to take care of the house while we are gone, I have fantastic insurance, and Lisa has worked hard to make sure all the paperwork and details have been addressed with the hospital. At this point, it’s just a matter of waiting.

During my surgery in Miami I will only be able to have one person in the waiting room, and when I come out of surgery I will be recovering in the Intensive Care Unit so access to me is, again, incredibly limited. A few people have offered to come to Miami to be there for us, and while that’s an amazingly kind gesture it is not something we could take you up on.

I do have two favors to ask of everyone, however.

First, please don’t share the password to this blog or the information in it with anyone. I’ve been open about all of this since I was diagnosed but it’s still a very personal and difficult situation that’s not for public consumption, especially at this particular juncture.

Second, please do not reach out to Lisa right now. She is grateful for everyone’s continued support but needs to focus on all the moving parts of my care, recovery, patient advocacy in the hospital, travel, insurance logistics, and FMLA requirements to make sure nothing slips through the cracks.

We cannot thank all of you enough for your support, positive vibes, and help over the last few years. It has been a rough go, and it’s still going to be for a while yet, but I truly believe that we’re going to have a positive outcome very soon.

Thank you all for your continued love and support.

If you haven’t already, you can subscribe to my blog using the links below this post. This will ensure you are notified as soon as possible when new updates are posted here to blog. The password for all these posts will be the same.

Backstory

Because I cannot be sure who knows what about where things currently stand, here’s a brief rundown of my diagnosis, prognosis, the anticipated procedure, and expected recovery timeline.

• I have a Pancreatic Neuroendocrine Tumor on the head of my pancreas. It is 15cm by 13cm by 2cm large. It was diagnosed on July 26^th of 2022. I have been through several rounds of chemotherapy and one round of immunotherapy to try and get the mass to decrease in size, but none of them have worked. The tumor does not have the proper receptors to attempt radiation therapy. The tumor is malignant, but it has not metastasized into any other areas of my body yet and I am, for the most part, asymptomatic. I have several issues going on that are very likely related to the mass, but those are mostly due to the fact that it’s just this big thing pushing on all the surrounding organs. Speaking of…
• The primary complicating factor in treating my tumor, and why it’s necessary to do so, is the fact that it has occluded (blocked) my Superior Mesenteric Vein (SMV). This vein carries blood from the stomach to the liver (so it’s, you know, important). My body has adapted and the blood is still flowing as it should through nearby blood vessels, but they are not designed for this kind of work and have grown larger than they should be as a result of doing it. Two different surgeons have deferred taking my case because of this occlusion as it’s a very risky procedure. The surgeon I’m seeing in Miami is a specialist who has been doing these types of procedures for 40 years.
• I will be recovering in the hospital for approximately two weeks, assuming the procedure goes as planned. When I come home, I’ll be recovering for several more months. This is a massively invasive procedure, and I will essentially have to rebuild all my core muscle strength from nothing.