Pheochromocytoma? Seriously, bro?

My initial post here was a little dramatic and emotional—not that it’s not an emotional moment, but I wanted to take some time to explain more and share more of what I know. I was definitely a little bit panicked last week, but I'm getting my shit together now. :) 

I know that many people noticed that I dropped off social media for days and weeks at a time over the past several months. I’ve been sick on and off since January, with more bad days than good since late March. Ultimately I was unable to keep up with my workload and have only been working part time since the end of February, which is very difficult way to live in a city such as DC. Things had been financially tight recently, but we had been getting by until a sudden (upcoming) move (to Alabama—Jason has accepted job with NASA) coupled with ongoing medical expenses began to push us over the edge.

As for the medical issue, I’ve been diagnosed with pheochromocytoma, which is an exceptionally rare condition (1,000 people diagnosed with it a year) that basically means I have a very disruptive tumor on my adrenal gland. This has resulted in literally countless symptoms and may have been something I’ve had since high school, though it’s difficult to know at this point. For years doctors have been treating symptoms individually as stand alone problems. What has changed in recent months is that my blood pressure has spiked to dangerous levels and can no longer be entirely controlled by medication. I’ve also been experiencing frequent tachycardia, irregular heartbeat, spiking temperatures, and abnormal sweating.

So what does all this mean?

Well, I’m going to require surgery to have the tumor removed. The surgery is complicated, rare, and there aren’t a lot of surgeons who have experience with it. My ongoing cardiac problems and hypertension increase the risk of the surgery exponentially. Unfortunately, there is no way to treat the condition with medication when symptoms are as aggressive as mine—the risk of heart attack or stroke would be substantial over time. There is also a concern that the tumor could be cancerous, although I’ve been assured that the risk is less than 10% when the condition is not hereditary. Also, cancer that begins at this location is almost nonexistent, so if my MRI next week doesn’t reveal any additional abnormalities, the risk of malignancy is even less.

Moving forward I have a lot of concerns, as you can imagine. The one that’s bumming me out the most right now is begging for money, but I know from personal experience that the ego always recovers. With an imminent move to Alabama looming, I’m going to be dealing with an awful lot of nonsense on top of my medical situation. Right now my goal is to figure out what will be completely new insurance in two weeks. I’m thinking that the preexisting condition thing isn’t the nightmare it used to be, but it’s still something I’ll be navigating. Once the move is made, my primary goal will be getting back to Pittsburgh to see family and friends and have the required surgery. It’s very risky and the last place I want to face something so daunting is in Alabama (no offense—I’m sure people there are lovely and doctors qualified). I just need to be home. 

In terms of money, I think anyone who has ever had even a surprise trip to the ER knows how crazy expenses can be and how quickly they add up. I’ve been advised to prepare the best I can for a substantial hit—because of the risk, the surgery will require an endocrine specialist, a cardiologist, specialized anesthesiologist, potentially among others. I hope it’s not going to be as bad as I imagine—I hope NONE of it is going to be as bad as I imagine, but I simply don’t now at this point. Right now I’m focusing on living life the best I can and trying to come to terms with relying on people…financially…emotionally…perhaps physically for awhile after surgery. :) 

I have no idea what the future holds—I suppose nobody does—and I completely understand if you are not in a place where you can or feel comfortable giving. Just try to send a few good thoughts my way and I will be forever grateful.

And I want to say that if expenses end up being less than I have been planning for or I am able to get back to work fulltime sooner than anticipated, I promise that nothing will be spent on shoes or other nonsense. I intend to only withdraw from here as needed, and anything additional WILL be donated to an animal sanctuary. Right now I am considering Poplar Springs locally, which I have donated to peronally in the past, but am absolutely open to suggestions—especially if they're in Pittsburgh.

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Organizer

Amber Lee 
Organizer
Arlington, VA
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