Tuesday, August 29, 2006

Battle of the Bands

Today I had a phone message from the neurologist when I got home: my latest spinal tap test results are in, and they are positive for oligoclonal banding. As you may recall, this result, when combined with MRI and other findings consistent with MS, is solid support for an actual diagnosis of MS. I've got an appointment with the doctor on September 5th, after which I ought to be able to say better what exactly this test result means, but I thought I"d pass along the breaking news as it happens! So far, I view this as good news. A clear diagnosis is preferable to an extended process of worry and discovery. But I'll keep my eyes and mind open anyway.

Also today, I received my second box of Avonex, proving that Walgreen's Specialty Pharmacy, while not as good as Avonex Direct Delivery, is able, at least, to deliver my medicine. They sent it to a Walgreen's that's on my way home from work. The store called me this morning letting me know it was in, and I picked it up on my way home. Well, actually, I came all the way home, realized I'd forgotten to pick it up as I pulled into the driveway, left Audrie a quick note, and drove back to pick it up. On the way there, I passed Audrie coming home, and we exchanged knowing glances through our car windows.

That's all the news for today. For some reason, the last two posts didn't get to Blogger the way I wanted them to, so I sent them a different way just now. Hopefully this one will work okay. And that's what's happenin'!

Saturday, August 26, 2006

Connections

Another side benefit of being diagnosed with a serious disease seems to be that people open up to you. I've heard a lot of touching personal stories from people I've known for years; but the stories never came out until I myself needed sympathy. It's nice to grow closer to my friends and coworkers, although I wish I did not have this particular excuse to do so.

Bad Consumer! Bad!

Last week's shot went just fine. I had fewer side effects than previously, and was even able to forgo a morning dose of Tylenol. Yesterday's shot, which Audrie administered with flying colors, seems to have left me with even fewer side effects: I didn't need Tylenol in the night, and have been fairly energetic today. Mind you, I still can't open my own pre-packaged beverages without Audrie's help, nor could I do well on a video game requiring fine motor coordination, but I could sit and help organize our CD collection with hardly a need for a break. Overall, I'm still feeling very positive about the trend in my reaction to Avonex.

Only problem is that, with all this improvement, I'll hardly end up buying any Tylenol at all. Not buying?! Entirely un-American!

Saturday, August 12, 2006

Sharpening

I want to write about another benefit of being diagnosed with MS, in a more serious vein this time. But I still haven't been attacked by zombies, so I think my last post on the subject was right on the money.

I've been telling people that this diagnosis has made me "sharper". When I say this, I mean in the sense of a blade, but I recognize that my internal symbolism doesn't translate well. A better externally referenced analogy would be in the sense of a picture: more focused, less fuzzy. I find that I am less willing to waste time being afraid or worrying about what other people might think of me. This reminder of mortality has made me more honest and straightforward. If there's something important to say or do, I do it a lot more quickly than I would have previously. If I've got something to say, I'll say it now instead of keeping quiet out of what amounts to fear.

I see this as a good thing. I believe that it helps me, because I get feedback on my actual thoughts and feelings instead of hiding behind too much politeness. I think it helps others as well, because I am more willing to share my creativity and insight without worry that someone will say my ideas are dumb. Maybe they are dumb—all the more reason to share them, so I can keep from making similar mistakes in the future.

I can feel this attitude improving my relationships and my effectiveness at work every day. Maybe I will lead a full life, just as if I were perfectly healthy. In fact, that's my plan. But if not, I know I'm going to be satisfied with the life I lead, and that's unspeakably precious.

Second Shot

Yesterday, my lovely wife gave me my second shot of Avonex. I was more nervous this time, so I was tenser, but she did a great job. Now we'll keep on switching off so that we both stay in practice. My side effects were a little milder this time. For example, I didn't have as many chills in the night. Some of this may be acclimation, but some of it is also me being smarter—for instance, this time I wore pajamas to make the chills more bearable. I've also hydrated even more religiously this time, and my headache today is better than last week. Now that it's evening, I'm starting to wind down, but overall I'm even more hopeful after this weekend's experience.

The Avonex folks also called to follow up with me and see how last week's training went. You can really provide good customer service if you have ridiculous amounts of money, it seems.

Sunday, August 06, 2006

Twenty-four Hour News

Just a quick update on the metabolic half-life of Avonex in Stephan's body.

Yesterday (Saturday), I had a lingering headache until late afternoon. I could also feel the echoes of my joint and muscle pain, which manifested as a slight weakness. Luckily, Mighty Audrie was around to help me open my frappuccino. I didn't even bother taking any medicine for the headache, though, to give you a sense of its non-hurt-a-lot-ness.

I fell asleep just fine and woke up this morning (Sunday) feeling totally normal. Looks like my Saturdays may be days of rest, but I certainly won't be laid up in bed all day. I feel very hopeful—this whole thing seems entirely manageable.

I've got a number of other terrifically interesting things to say in this particular blog, but I am currently much too lazy to actually write them down. Someday soon, though, your RSS reader is going to be hopping. Till then, be excellent to each other.

Saturday, August 05, 2006

Side Effects

It's now 17 hours since my first injection of Avonex. I have some good news and some bad news.

The good news is that, although I felt flu-like symptoms, they are entirely manageable. About 4 hours after the injection, I started feeling muscle and joint aches, chills, and a headache. This happens to be 6 hours after I took my Tylenol, so the symptoms may have been masked until then. I woke up every hour or two in the night, thirsty, and drank a glass or two of water.

I took Tylenol again twice more, at six-hour intervals, when the symptoms were strong enough to keep me awake; each time, I fell asleep again shortly. This morning, I have a little headache, but the other symptoms have subsided. I expect to feel normal again by the afternoon.

One fun thing is that, although I had flu-like symptoms, I didn't feel sick. My health and energy were strong. I imagine I'll be able to learn how to differentiate illness from some of its secondary symptoms.

Oh yes, I promised you bad news. Frustratingly, I have yet to show even the slightest sign of developing interesting new superpowers. I was certain that with all the radiation and procedures and injections I've had lately, superpowers would be inevitable. Maybe I'm just a late bloomer—I'll keep you posted.

Friday, August 04, 2006

Avonex

So today I took my first Avonex shot. It's still a bit early to tell how I'm going to react to it, but so far I'm feeling good. The most common side effect is flu-like symptoms. I've just been pretending that I already have the flu all day, drinking lots of water and taking some Vitamin C. Then I took two Tylenol a couple of hours before the injection as an additional preventative.

The way it worked today was that I went down to a local health care facility and got training on how to do the injections, then gave myself my first shot. My wife and my mom both came with me to get training as well, so that they can be back-ups for me as needed. There was also another woman there who was diagnosed with MS two or three weeks ago, accompanied by her husband and their children. The kids stayed out in the lobby and played handheld video games or wrestled while the rest of us got schooled.

Of course I was very meticulous about following instructions and doing everything just so, because that's how I am. I was surprised to find how little the shot itself hurt. It was uncomfortable, especially once the rather long needle was all the way in, and then there was a little pressure when I sent the medicine down the tube, but no big deal. Now I'm just waiting to see how the side effects hit me, because apparently the first time is about the worst it's ever going to be, at least for flu-like symptoms.

I've been very impressed with Biogen Idec, the makers of Avonex. They've got a great support system. I've spent probably two and a half hours on the phone, total, with various representatives who called me to give me tips and make sure I felt comfortable with the whole scenario. They helped me with insurance and got me in touch with the people who did today's training. There's a lot of money in the biopharm business, and it's in everyone's best interest for people like me to keep buying these expensive, effective drugs, so plenty of money gets spent on the support system.

I can imagine some people resenting the weekly injection of a foreign substance into their bodies, especially when it comes with short-term side effects but it's long-term effects are an absence of symptoms. But I choose to look at those little vials sitting in my fridge and see them as tubes filled with life and hope. Here's to hope!