Wednesday, September 27, 2006

Wednesday in Utah

We went to a seminar yesterday (Tuesday, 9-26-2006) about MS, given by an MS specialist from Phoenix. It was sponsored by Biogen Idec, the makers of Avonex, but it appeared to be entirely unbiased; the doctor had good things to say about all the therapies on the market. Among other things, we learned that there is no known risk of Avonex causing any problems with us having another child (if we want to). That was nice to hear.

The side effects from my last shot were once again somewhat less than the previous week. I even managed to open a new jar of spaghetti sauce, though it was a bit of a struggle. Audrie wasn't home at the time I was making lunch. I had forgotten that I was going to have to open a new jar, but went ahead and gave it a try: success! I felt like Popeye, or maybe Conan.

I've now successfully traveled with my medicine, too. We flew up to Utah this morning with two syringes of Avonex in a little styrofoam cooler, and encountered no problems. I didn't think of a good way to measure the temperature inside the cooler until just now, when I remembered that you can get dual-probe thermometers which track maximum and minimum temperatures for each probe. I ought to deploy one of those for my next trip, so that I can set my mind more at ease. I only hope it doesn't look like a bomb trigger or something to the X-Ray. This Friday, I'll do my injection at Audrie's grandmother's house. It's just adventure after adventure for this hep cat!

Friday, September 22, 2006

Big $$$ + Care = Good Products

Biogen Idec sent me another little insert for my Avonex binder today. Every so often, I get an unexpected package in a padded mailer containing a letter, a 10-20 page booklet, and a medicine information pamphlet printed on Bible-thin paper. The letter usually says something nice about how Biogen Idec (the makers of Avonex) are psyched that I'm taking their product, reminds me of the various support resources they offer, and describing the booklet.

Today's booklet is titled Our Journey is MS (Letters from people who have been there). It has short letters from 8 different people, all of whom have been taking Avonex since at least 2001, describing their experiences and offering encouragement. It also talks about the mentor program that's available. The booklet is quite well done, and I appreciate getting it. I felt motivated after reading it. I also felt sad, as I always do when I read stories of people with MS. Those poor people.

There were a few things I particularly liked, and want to share. Faith described Avonex, along with its needle, as her weapon of choice. I love the idea of that needle as a weapon, like a sword. I am a bit suspicious of focusing on a "fight" metaphor, however. MS is not a thing. Fighting MS sounds a little too much like fighting a "war on drugs". There's no little alphabet running around in my brain eating at my nerve sheaths, setting up offensives or trying to get me when I'm not looking. An image that appeals to me more is of the needle as a magician's wand, and of Avonex as a healing elixir. But without Faith's analogy, I wouldn't have thought of my own.

Several people talked about how MS actually has made a positive change in their life. Like me, they have found that the disease and its treatment brings all of life into high relief, making it easy to be grateful for every day lived, every step walked, everything this wonderful body of mine can do, and everything the world offers.

John said, "Remember, you may have multiple sclerosis, but it certainly does not have you!" I take his point. But, being contrary, I have to turn it around. Here's my version. I may have MS, but it also has me—and it's gonna regret that! Foolish disease, you have chosen the wrong target. Okay, so maybe I do like personifying it and fighting it :)

Jackie gave this good advice: "After I take my shot, I immediately do something nice for someone else...it's amazing how good I feel afterward." Faith suggests rewarding "your weekly persistence with a small treat". Maybe I'll try doing both. I got myself some cookies tonight, and gave Audrie a pretty card to thank her for all her help and support.

Audrie administered my shot today, wielding the needle like a veteran. I remembered my plan to look for places on my leg with no visible blood vessels near the skin, and hardly bled at all. I did feel a little anxious just beforehand. I took a deep breath, looking away, and held up a finger for Audrie to pause. Then I took a second deep breath, meaning to signal Audrie to wait just a little longer; but she took my obscure second gesture as a request to proceed, and so, like the best nurse in the world, injected me while my attention was elsewhere.

It's funny how I get nervous. The shots hardly hurt at all—I'd say that the soreness of the twentieth push-up of the morning is more actual pain. The anxiety is clearly all a result of some story that I'm telling myself unconsciously. I think I ought to return that particular storybook to the library and check out a new one.

Sunday, September 17, 2006

Solo

This Friday was my first time doing my shot completely solo. Audrie was over at a friend's so that I could try this experiment, which went well overall. I did have a moment of comedy when I ended up washing my hands no fewer than three times: first to get ready, second to get ready again after I forgot to turn on the overhead light, and third to get ready yet again after I forgot to bring out the Avonex log book. I doubt many germs remained after that third time.

I also did the injection itself better than previous times. I remembered my clever idea about how to position the syringe so that it's easy for my left hand to grab. I was more aware of all my sensations during the injection than previously, because I was, for the most part, calmer. The only thing I forgot was my plan to survey my leg for veins ahead of time, and avoid them. It's good to have something to shoot for next week :)

I've been flirting with a cold all of last week and still this weekend. I've been taking echinacea to help forestall it. Echinacea is an immune booster, and Avonex is an immune modulator. Put them both in your body and what do you get? Sounds like a Steven Wright joke, although my laughter is a little forced. So yesterday (Saturday), I wore myself out a little—but on the other hand, I also was able to do more than at any time yet in my therapy. I also started out the day stronger than last week. I judge myself still to be improving week by week.

Saturday, September 09, 2006

Calloo! Callay!

Another week, another improvement. My shot didn't go as well as last week, because I tensed up at the last minute, but it was still no big deal. My side effects, on the other hand, were better than last week's.

This week I took some Tylenol PM on Friday night (a.k.a Avonex Eve) to help me sleep, because my sleep on previous Fridays has been shallow and easily interrupted. The drug did its job, and I slept quite a bit more soundly, and felt better this morning (Saturday). Unfortunately, we were awakened by several phone calls relatively early on, so I didn't get to sleep in.

Today I was still weak and achey, but Audrie noted that I looked more alert earlier in the morning than previously, and I recovered earlier in the evening as well. I was even able to leave the house for the first Saturday since I started on Avonex, and go sit at a friend's for several hours. While there, I performed amazing feats of strength such as opening twist-top bottles.

I like these enforced Quiet Saturdays. Today I sat for probably a half hour with the grey cat as she did a complete cleaning cycle, nose to tail. I just sat and watched her, enjoying her company as she enjoyed mine. I remember a lot of times like that from when I was a kid, and I treasure those memories. As an adult, I have emails to answer, household chores to do, more hobbies, and just generally more obligations, with the result that I do not naturally find myself with long spans of quiet time. Maybe as I continue to tolerate the Avonex better and better, the length of Quiet Saturday will shrink to just a few hours. I certainly won't mind feeling better, but I imagine I might fall back into the cycle of busy-busy-busy and lose some of the peace that comes of doing nothing.

And on a final note, I just wanted to say again how much I appreciate everyone's support. I keep getting regular emails, cards, and calls offering me so much encouragement and love that I truly believe myself the luckiest of men.

Thursday, September 07, 2006

Confirmation

Saw the neurologist today. I asked a couple of questions, got a note for air travel with Avonex (since the syringes and needles may cause a spot of trouble in airport security otherwise), and got a sense of the next few months.

First of all, when I asked the doctor what the oligoclonal bands in the most recent spinal tap results meant to him, he responded without hesitation, "M.S." So he feels sure that we have a solid diagnosis, which is good.

I asked how we'd be monitoring my liver function, which I gather you're supposed to do when you're on a drug like Avonex, and he responded that he was going to give me a lab order that day, then again in a few months. So sometime soon I'll go down to donate some fluids and get a workup of cholesterol panel, metabolic panel, and something else that I'm not remembering right now, but that contains the word "Chem" in it, so it must be scientific :) I usually get a physical every year, so I ought to have a pretty good baseline for comparison with a lot of these tests. As I understand it, drugs like this can be hard on your body, particularly on the liver, and so it's wise to keep your finger on the pulse, as it were.

Overall, it looks like "steady as she goes" is the plan. The only reason for a change would be if I start having trouble with Avonex, or if an M.S. exacerbation "breaks through" depsite the Avonex. In that case, he'd likely treat the symptoms themselves with steroids, and possibly switch me to another M.S. therapy like Betaseron, Copaxone, Rebif, or who knows what else by then (since I plan on that not happening any time soon!).

A little side benefit of frequent doctor's visits: on the way out, I asked for any recommendations about stethoscope brands, because we wanted to get one to listen to the baby's heartbeat when it becomes audible in a couple of months. In answer, he just gave us a spare stethoscope that he wasn't using! So I've been listening to everything: Audrie's and my hearts and lungs, the cats' hearts, lungs, and purrs; the computer fan; and, when I get a minute, I'll probably grab a combination lock and listen to it too.

Tuesday, September 05, 2006

Psyche!

The doctor's office called today and rescheduled my appointment that was supposed to be today for Thursday. It seems my doctor called in sick. Is he allowed to do that, I hear you asking? The answer, it appears, is yes—either that, or I've been had!

So tune in Thursday to find out the scoop, or possibly to find out that I'm just stringing you along and you'll have to delay again; either way, you win. YOU WIN!!! Exciting, isn't it?

Monday, September 04, 2006

Faster, Better, Stronger Than Before

This week's injection went well. I didn't even bleed at the injection site, though I suspect that is more a matter of luck than of superhuman physiology. And then, on Saturday, I was able both to open a Frappuccino by myself, and to turn on that one light in the living room, neither of which has been possible on previous Saturdays due to my post-Avonex weakness. Soon I will be able to add other activities to my strong-man routine and impress all the ladies.

In other news, I've got an appointment with the neurologist tomorrow (Tuesday the 5th) to get a note for air travel and find out what, if anything, the next step is. I'll catch up with you again after my appointment.