It’s been a bit since I sat down in front of the old blog here. This is such a common theme that it probably constitutes a significant percent amount of my web traffic. People search for “I haven’t posted in a while” and michaelcmcgreevy.com pops up to the top of the list.
That’s not true, of course. I don’t pay to advertise on Google so I don’t show up in any searches.
In any case, I wanted to take a few minutes to give an update on the state of Me for those of you who have been following along.
The last time I posted anything about my cancer was back in May of last year, and while it feels to me like a ton of changes have happened in that time frame the fact is that, for the most part, I’m personally in the same place I was back then. I still have a tumor. It’s still occluding a major blood vessel in my abdomen and it’s still inoperable. I’m still taking chemotherapy drugs to contain the tumor and keep it from growing any further, but at this point I have not seen any reduction in the size of the mass from that therapy. I’m still dealing with low energy levels much of the time and am still trying to juggle having a social life of any kind in conjunction with being completely unpredictable in terms of how I’m going to feel or how my schedule might need to change to accommodate medical procedures. The tumor is still Stage 1, well-differentiated, and has not metastasized.
In many ways, my situation is my new normal. I’ll let you decide if the “all fucked up” part of that applies.
I do have more information about my situation now, though, and if you’re interested you can keep reading to find out what the latest is.
After finding out that I was not a candidate for surgery in Tampa my oncologist at Moffitt put me on a different type of Chemotherapy called Lenvatinib. As was the routine with the combination of Capecitabine and Temozolomide that I was on prior to that, I had a CT after three months to see what changes, if any, showed up in my tumor. Instead of shrinking, the tumor appeared to have grown slightly. My doctor decided to take me off the Lenvatinib and put me back on CapTem, but before she did so she arranged for me to consult with a surgeon in New Orleans to get a second opinion on having the tumor resected or removed.
I met with that surgeon in late October, and he was as equally pessimistic about the potential of having a positive outcome from trying to remove the tumor. He mentioned that he could possibly be “convinced to give it a shot” if I was very passionate about that as an option, but Lisa and I both agreed that having to convince a surgeon to perform a potentially life-threatening surgical procedure is probably not the wisest course of action.
He did, however, suggest an alternative course of action. He said I might be a candidate for a dual-organ transplant, and he referred me to the University of Miami transplant center for an evaluation.
Things were a little hazy around this. After that meeting with him, I thought he was just talking about replacing my liver and pancreas. What I didn’t understand was why that was safe when just removing the tumor and/or pancreas was not. I also didn’t understand why my liver had to go, as the tumor is sharing a blood vessel with my pancreas and no cancer has spread to my liver yet.
I met with the surgeon in Miami last Monday, and I have those answers now.
I was not referred as a candidate for a dual-organ transplant. I was referred as a candidate for a procedure known as a Multi Visceral Organ Transplant (MVOT). The easiest way to explain this procedure is that, in essence, my abdominal cavity would be cleaned out and all the major organs and vessels in it would be transplanted from another donor as one solid unit. The only organs in that area that would remain intact would be my kidneys. The reason this is less risky to me, despite the amount of “stuff” being replaced, is that the number of tricky connections is significantly less. Instead of having to navigate severing and reconnecting many damaged blood vessels, they would be making relatively few and in places that are easier to get to/repair.
This is, of course, a major invasive procedure. I’d be in the hospital for weeks recovering, and Lisa and I would need to relocate to Miami for potentially as long as six months or more, depending on how my recovery is going. We’d need to find a place that we could move our entire family to, which includes our cats and rabbits, as leaving them behind for that long is simply not an option for us (even knowing that our friends would volunteer to feed them on a regular basis). It would be incredibly expensive, even with the housing allowance we have as part of our insurance (let’s face it…Miami is not a cheap place to live). While it would completely cure my cancer and (likely) my diabetes, I’d have to take powerful immunosuppressant drugs for the rest of my life.
If I decide not to go with this procedure, things would pretty much remain the way they are now. Chemotherapy to control the growth of the tumor, regular CT scans and a bi-annual PET scan to make sure it’s not growing and impacting other areas of my body. The big risk in that scenario is that if the tumor DID metastasize and it spread outside of the abdominal cavity I would no longer be a candidate for the MVOT. I’m also in relatively good health right now and am still considered young enough that it’s worth doing, and who knows what kind of damage I’m doing to my system while the diabetes persists.
So that’s where things stand. I’m still here. I’m still unsure of what my future looks like from one day to the next. I’m still trying to fight the good fight and keep a positive attitude about everything despite being bone-numbingly tired of all of this…mess. I’m still doing all this with my incredible partner and friend at my side, and still thankful I have her because I don’t know how I’d manage to keep my head on straight without her.
Like the sign says, I aint’ent dead yet.
