Yesterday, I “Twitter-teased” (Tweasered?) that my appointment at Mayo on Tuesday resulted in some relative positivity. That is certainly true, and therein lies the extreme roller coaster nature of this entire situation. Some days have great news, some days have bad news, and in some ways the most frustrating of all, many days have no news.
Tuesday was a mixture of bad and good that weighed in just a bit more on the good side.
The first appointment was with the surgeon that I have already spoken with twice. He is very good, very clear, and very blunt. Exactly what I am looking for. We went over my latest MRI to see where the pheos are choosing to hang out these days. As he has stated before, and that I am well aware of, the situation ain’t pretty. Not pretty at all. We went over the location of the half dozen culprits and discussed the inevitability of there being more that are just not seen at this point. The doctor reiterated that surgery is not amenable at this time due to my previous surgery being only in late February as well as the murky efficacy of going in there in the first place. I’ll let the official report from the surgeon speak most clearly for the situation at hand:
In an ideal world surgical resection would remove all tumor. I think this is virtually impossible given all that Mr. Enright has gone through. Nonetheless, if a narrow focus of tumor is identified, then surgery may be of benefit. This would be an open laparotomy with potential aggressive surgical intervention potentially involving hepatectomy, partial gastrectomy, pancreatectomy, splenectomy, left adrenal bed resection, and portion of the diaphragm.
Well, what can a person say when they read that about themselves? Three options:
2. Shit. Fuck. Son of a Shitfuck.
3. What are my other options?
So, figuring the third option was the most productive, we headed upstairs to speak with the head of the Endocrinology Department and a world recognized expert on pheochromocytoma. Following is his highly condensed and paraphrased talk with me:
Keith, what you have is incurable. There is nothing at our disposal to get rid of this disease. You are young and otherwise healthy. Right now the most important things we can do for you are symptom control and quality of life. Your tumors appear to be slow growing. It took almost 10 years for you to get to this point after your original 2-inch tumor was removed. Yes, there are a lot of them, but most of them are quite small. We’d never be able to find them all, and we’d never be able to remove them all. Anything we do to you will poison you. Surgery is poison. Chemo and radiation are poison. Poison is just too drastic for you in the short term. It doesn’t mean we won’t have to resort to it in the future. We can control your symptoms with medication. We’ll scan you again in July and see how the tumors are doing. We will constantly revisit this and adjust our plan as needed. Enjoy yourself for a while.
Some of you might be wondering where the good news is? Well remember, I called it relative positiveness. I walked out of there feeling pretty good for a few reasons:
1. I had just become the patient of one of the top pheo doctors in the world.
2. He was straight with me and laid things out clearly
3. My new medications were slowly helping my debilitating symptoms
4. Surgery was not imminent.
5. Chemo or radiation were not imminent.
Nothing has changed for me of course. It just feels great to call the hounds off a little and get a chance to breathe. My next tests and scans are in July and everything could change at that point. Until then, I’m going with the program.