Archive for March, 2013

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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