Archive for the ‘Pheo’ Category

…and it has been 4 years since my last post.

Wow. Time flies when you’re doing OK.

Returned from my yearly Mayo trip last week and things are exactly as they’ve been for the past four.

Static tumors, relatively little to no growth, and no issues to be concerned about for another year.

My blood pressure continues to be wildly over-ambitious, but the fistful of daily medication seems to keep it reasonably under control. Fatigue is still an issue, but I’ve resolved to get on a better exercise regime to counteract that. It’s always a juggling act as the exercise can exacerbate the blood pressure easily, but I’m confident I can find the sweet spot.

Other than that, I tend to not think about my illness from the big picture standpoint. Day-by-day and all that. Life is good. Damn good.

7 years ago I was convinced the end was nigh. Statistics bore that out. But just as I was going against the odds to have such a rare disease, the odds seem in my favor now for how it is affecting me.

My plan this week is to continue celebrating and buy a new car.

As always, thank you for all of the support and well-wishes.


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It’s weird, having cancer.

Simple things like a headache, or dry skin, or a tummy ache take on all sorts of dark and devious overtones. Cancer is the FIRST thing you think of, instead of “go to the bathroom, you dummy.” And then, of course, all is better and you stop worrying until the impending hangnail.

That’s what I’ve been dealing with overtly for the last 3+ years. Varying degrees of hypochondria, acceptance, depression, aches/pains, adrenaline rushes, headaches, exhaustion, highs, lows, and ignorance. All of which get blamed on the cancer at one point or another.

But you know what? Life has never been better. My boys have grown into fine young men, my relationship with Maggie is the best I’ve ever had, my work is rewarding and interesting. I travel the country and get paid for it. I have a stimulating hobby in my appreciation of real film. Life is comfortable and rewarding and fun. I suspect my life will be shorter than average, but the quality is sure trumping the quantity.

But DAMN, that exhaustion!

For three years I have subsisted on 12 hour nights of sleep, daytime naps of up to three hours, lost weekends of sleep, no ability to enjoy a beer, a missed work schedule that only an understanding boss would accept, and a head full of logy that nothing could shake.

But why would an adrenal cancer do that to me? Shouldn’t I be all jumpy, angry, and jittery? I was 12 years ago when I first got this. Why so different this time?

I started on a drug called phenoxybenzamine in early 2010. Awful stuff, didn’t do a thing for me other than make me feel as bad as I describe above. I begged the doctor for another solution. Finally we found one in a very expensive drug called Demser, that I’ve spoken about here before. Made me feel so much better, but much of the exhaustion stayed, and I’ve dealt with it for two years.

And then the bad news: The company that recently bought the pharma company that produces Demser made the short-sighted decision to quit manufacturing it and put it on indefinite backorder. I was stunned. I felt like I’d been hit by a truck. 

What the hell was I going to do? I asked my doctor, he said I’d have to go back on the phenoxybenzamine. I silently told myself I would never go back on that no matter the consequences. But what would I do? I had visions of losing my job, heading back to the sofa, and just basically becoming a burden.

Through fancy footwork, I was able to backlog a few months of Demser, but that would only last so long. Every day that I took one, I saw the end of the supply getting nearer and nearer.

Finally I told myself that I needed to face this outcome and be prepared for it. I decided to cut my dose even further than I had with no ill effects. And then I decided to just go cold turkey and see how long I could go before I was knocked for a loop. Demser has a very short half-life so after three days it is completely out of your system and you get your answer very quick.

Well, folks: That was 19 days ago and I am feeling better than ever. My energy is up, my stamina is not bad, I take very few naps, I actually stay up until 11pm, and I fairly bound out of bed in the morning. I still get headaches, but a couple aspirin a day take care of that. I’m still not going on a 5K hike, but there is a bounce in my step! And if it ever comes to it, I still have three months of Demser to tide me over to something else.

Thanks for reading. This is really stupendous news for me at this time, and I plan to ride it as long as I can.

Now, about this heartburn….


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A good day.


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The Mayo – Results



Nothing major to report.

Left adrenal bed active but not growing.

See you in a year.


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The Mayo – Tests

Here I sit.

Exhausted after two days of tests. Took a little nap, did some work so I don’t have to take the day off from work, and now waiting to head out for a belated birthday dinner with the lovely Heppers. Tomorrow morning at 7.30 we get the results. I’m more nervous than I was before the tests, but still very anxious to hear.

The tests started out simply yesterday with a chest x-ray. Take off your shirts, put on the paper vest, click-click-click. Freezing of course.

Then off to bloodwork. My first poke of the day. Gave them what they needed -I’d guess about a gallon or so- then off for some much needed breakfast to break my fast.

Then off to Nuclear Medicine for the first of three steps. They had to give me a serving of Lugol’s Solution (high-powered iodine) to protect my thyroid during the upcoming test. Then I was instructed to come back in an hour for my radioactive isotope.

I had things to do though, other than wait. We headed down so I could get my ECG (Electrocardiogram) and test my heart. Once again, stripped to the waist, freezing. Bonus: my 47 year old man boobs stacked up pretty well against the other unfortunate souls lined up with me.

Then back to Nuclear Medicine for that injection. Second poke of the day. Pretty disturbing to watch this material going into your left arm while the syringe is encased in lead. Ick. I’ve had this done 4-5 times now and I never get used to it. Gives me the willies to know I’ll be radioactive for the next week or so.

And then back to Maggie’s folks for a nice lunch, and a three hour, dead-to-all coma nap.

And then back to Mayo for the MRI.

Technician says: so you’re here for a liver MRI?

Me: I guess, they’ve never been so specific before. Usually they just say abdomen.

Tech: We’ll be doing a Magnetic Resonance Elastogram on your liver to test for pliability and tumor growth.

Me: Shit.

So they strapped me in, put in the IV (third poke of the day), and took lots of pictures for an hour, and beat the hell out of my liver with an air-driven paddle. I must admit, it tickled.


This morning I was back in Nuclear Medicine first thing and sliding back in the Hulk tube for more pictures of my radiated tumors. This was much more relaxing and I slept almost the whole test. I thought I was done but the radiologist saw enough interesting things that they wanted to do some 3D imaging.

So off to another tube for more. Not so relaxing this time. I had to keep my arms over my head the whole time. I’ve had frozen shoulders twice and that makes it very painful. I started to freak out a bit, but I made it without ripping off the straps and destroying the equipment.

So that’s my two days. Thanks for all the emails and Facebook posts. It means a lot.

I return soon with the results.

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A year and a half since my last post.

Many things continue to be the same, much is a lot different.

I turned 47 yesterday and I head for Mayo tomorrow for my yearly poke-and-prod. Three days of tests and I hope for a status quo.

If I can remember them all:

Urine tests
Blood work
Chest x-ray
Echo cardio gram
Radiation injection
Abdominal MRI
Adrenal MIBG I-123.

I still feel hopeful but the rational side says some growth will be noted. I’ve been dealing with fatigue and abdominal discomfort for months and years but there had been an uptick lately. We shall see and I’m ready to be happily proved wrong.

As most of you know, I returned to work in the summer of 2011. It’s a fantastic job and I’m so appreciative of it every day and the leeway they’ve provided for sick days and working from home. The benefits are fantastic, which are exactly what I’ll need for the rest of my life.

Maggie continues to be my constant. We’ve been together three years now, most of it cancer-clouded. She amazing. Me grateful.

My boys continue to be fantastic. Drew from Afghanistan, Gage from Andover.

Maybe I’ll update more, but probably not until things change. So, here’s to fewer posts for now. If you want to follow my bemused daily thoughts, find me on Facebook.

Love to all that read this.


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Promises, Promises

Back in mid-December I said I’d be back within the week to provide an update for my Mayo trip. For those of you that follow this website, I’m sorry that I let Facebook and grapevining take the upper hand.

My tests at Mayo came back as great as they reasonably can at this point. The tumors are completely static and my catecholamine levels are reasonably stable. My medications are working quite well and my stamina increases all the time.

For the first time in a year I don’t constantly think of cancer and death on a daily basis, and I’m back to looking for work after two plus years.

I don’t have to go back to Mayo for another scan until December and they are going to check my hormone levels by mail in May. I’m very glad to get the break for sure!

All-in-all things are looking very good all things considered. Science has certainly been coming through for me. Long live science (and me).

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