Saturday, February 24, 2007

Adventures in Babylifting

Early Friday morning, Audrie woke me up to tell me something was wrong with her. She was experiencing strong vertigo and just not feeling “right” . Both of us thought immediately of how vertigo was the first sign of both of my MS episodes, irrational as that was. It was a rough morning, but after a phone call to the doctor and a few hours of taking it easy, we were pretty sure she “just” had either food poisoning or the flu. I stayed home on Friday, and both of us held our breaths as the hour of my shot approached. But by 8 PM, Audrie was feeling well enough to hold the baby while I wielded my Syringe +1 of Luer-Lock (Interferon), and she’s continued to improve all day today as well.

Remembering the lesson of last week’s lovely ladies and their songs, I put on the song Orinoco Flow by Enya to accompany my shot. Sure enough, I found that my mind had somewhere to go besides to my physical sensations as I injected. It was kind of a strange feeling, as my attention was split, but it was helpful too. Last night I had a headache and some mild body aches, but with the help of plenty of water and a solid amount of sleep, I was feeling not too bad this morning. The baby had kept Audrie up for a lot of the night, so I took him a little earlier than I normally do on Saturdays. I found that it was definitely harder than usual to lift 13 pounds above my head, and I had to move him around frequently as I tired.

My side effects last night were minor, but significant nonetheless, and I wondered if perhaps I had reached a plateau in their steady improvement. Maybe now I’m just bouncing around a fixed point, and the severity is not going to decrease much. All the literature does mention 6 months as the length of time that most people take to acclimate to Avonex. But then I noticed that, by 3 PM, I was feeling nearly normal. It usually takes longer than that. So I’m hopeful that maybe the length of time I experience my side effects will continue to decrease. Later on in the evening, say by 7 or so, my shoulders were starting to ache again, but my strength was still pretty good.

This morning as I was trying to help take some of the burden off of Audrie, I could feel a temptation to just pass the baby back to her and claim I was too tired and weak. I don’t know, but I imagine that Audrie must struggle with that same feeling every Friday and Saturday, when she’s taking solo responsibility for him on too little sleep. And yet, she never complains or shirks. I can only thank her all the more for all her support.

When I look at my little boy, I love him so fiercely that the prospect of anything happening to him stuns me. Then I think of what my own parents must have felt when I told them that I had been diagnosed with MS. Sorry, guys. Next time around, I’ll try to avoid the incurable brain disease. On the bright side, if they do find a cure, you’ll be totally relieved. It’s like the parable of the guy with the hammer.

Today as I was beginning to come out of my achy period, I thought about how nice it is to know in advance that each week, my tiredness and aches will evaporate in just a few hours. It sure makes it easier. I guess a lot of the time, I feel best in the morning, then begin to tire as the day winds down. But Saturdays are nearly the opposite—I feel better midway through. (I guess that’s closer to quadrature phase than to opposite, but this is a family show, and I try to keep the language civil.) What an adventure I’m having. Thanks for coming along with me, and I’ll check in again next week!

Sunday, February 18, 2007

The power of song

If, as they say, life is a cabernet (old chum), then there's no pinot in wining about what's gone by. Happily for me, this week's shot was the Best Ever™, so I have only good news to report.

This was the first syringe with the new luer-lock attachment, which was kind of exciting. Our biggest fear with the old luer-slip style was that we would pull the needle off the syringe by mistake when we were trying to remove just the cap.

As I was preparing for the injection, Audrie asked me whether I wanted to have her and Leif in the room with me, or if she should be in another room in case the baby started screaming. It took me a few moments to make my decision, because I was considering the wrong trade-offs, but in the end I remembered that there is not one thing in this world I would trade for the chance of having my son with me. So that was easy.

W— had come over for a visit, so she and Audrie were both in the room singing to Leif when I did the actual injection. I was amazed to notice that the shot did not hurt at all, and nor did it bleed. L— had told me some months ago that it might help to have music on for the shot, but I had forgotten to try it. I can assure you that next week I'll be playing a CD!

My side effects were slight again on Friday night and Saturday, nothing like the week before when I was so achey. I remembered to have water with me, thanks to Audrie's excellent suggestion to bring in a few bottles from our lactation support stash. I also didn't have any sweets after the shot, opting instead for popcorn with white cheddar (a la Smartfood®, that staple of college life, but Safeway's Organics brand). And I'm sure the singing helped too. Tune in next week to find out whether recorded music works as well as live. If not, maybe I'll hire a Friday night all-singing, all-dancing chorus to take the edge off. But let's not get ahead of ourselves.

Sunday, February 11, 2007

This week was a step back, as far as side effects go. The shot itself went perfectly well. Audrie administered it again, and again was in and out in the blink of an eye; nor did it hurt. But in the middle of the night, I awoke with aches in my head and joints, and feeling cold. It wasn’t chills exactly, just kind of cold. Compared to last week, which was about the best ever for side effects, this week felt like a throwback. Of course I’m looking for causes.

Guess 1: My big mug broke a few weeks ago, and so, although I hydrated well during the day, I didn’t have a big reservoir of water on hand at night. Maybe I was dehydrated.

Guess 2: I had a bunch of cookies after my shot. I have a vague notion that sugar and alcohol are metabolically similar; the Avonex side effects feel a little like a hangover; and I know doctors keep a watch on the liver function of patients on interferon products. Whatever the connection, maybe a bunch of sugar after my shot is a bad idea. Last week, I had not had any sugar after my shot, even though I had eaten dessert after dinner, and my side effects were minimal.

Guess 3: Maybe variations in the injection site lead to variations in my response. Maybe different sites absorb the medicine differently.

Guess 4: Maybe it’s just different every week, and all I can hope to predict are trends.

Saturday morning, we had to get up early to go pick up Audrie’s new car. This was Leif’s first big outing, and my first chance to change a diaper in a public restroom. The hard surfaces in that room sure magnified my little boy’s big cries to giant-sized proportions. I felt a certain amount of pressure to be elsewhere or otherwise from the other people who came into the restroom while I was changing my son, but most people also made some sort of positive comment. Every day is an adventure. And after feeling bad Friday night, the mundane chore of helping to take care of my little boy during the night on Saturday seemed much easier—even though I was tired, I felt well. Saturday night and today (Sunday), I felt better, as usual.

I think I’m beginning to be able to feel the subtle side effects of Tylenol itself. I take two pills a couple of hours before my injection, and I start being able to feel something within an hour. I can’t describe it, and maybe it’s just anticipation of the shot, but it’s definitely there.

As for my weekly dose of something-to-worry-about, this week I had two. First was our ever-present trade-off between me helping with Leif and me getting enough sleep in the hopes that it will avoid an exacerbation. Audrie sent me off to the guest room to sleep one extra night this week because that worry was looming large (not out of any symptoms, just in the way that worries come and go). As I’ve read in many other places, one of the worst things about MS is its unpredictability. You never know when or how it might relapse.

The second is about immunizations. I was reading in one of our baby books about the usual schedule for childhood immunizations. It mentioned that certain vaccines, such as the live polio vaccine, present a risk to adults with suppressed immune systems. Mine is not suppressed per se, just “modulated”, but I still need to make some phone calls and do some research to find out if I need to take any special precautions.

The weather in Tucson this weekend was strikingly beautiful. My little boy is even more so. How grateful I am to have these days given to me in which to live and enjoy the world. I hope you all are well. I’ll check in again next week!

Friday, February 02, 2007

Six Months

When I opened my Avonex journal today, Audrie and I were both surprised to discover that I have been on the therapy for six full months. By this time, my flu-like symptoms are supposed to have subsided significantly, and they have—as has my discomfort with the shots. Tonight was also the first time Audrie administered my injection since our wonderful son was born. Unfortunately for her, it was a minor comedy of errors, though she handled it all with great aplomb.

We had dinner at my mom’s & stepdad’s second home here in Tucson, where my aunt and uncle are also staying for a few days. It was a fun night. I had forgotten to set out my syringe before dinner, so when we returned home at around 8:15 (shortly after my usual injection time), I had another half hour to wait while the elixir warmed to room temperature. Since my mother-in-law, a.k.a. Grandma Shauna, is staying with us for a couple of weeks to help with the baby, Audrie was not occupied with Leif, and volunteered to administer my shot.

As we started setting out the various material components of our weekly ritual, we heard Little Boy start to fuss in the other room. At exactly the same time, I heard one of our cats making that ever-so-evocative gagging sound that presages clean-up duty. We learned after everything had calmed down that one of the cats had constructed a clever booby-trap immediately outside the bedroom door, no doubt hoping that one of us would run to the aid of our infant son and, distracted by our concern, fall victim to the snare. Grandma Shauna had our backs, though, and hurried to the rescue, meanwhile attempting to soothe Lung Capacity Lad as his wails escalated in both pitch and volume.

Audrie remained focused despite the clamor just outside the door, and did her usual excellent job of injecting my medicine. One of my mid-level thigh muscles twitched just after she stuck the needle in, and didn’t relax until she had withdrawn it, which was somewhat painful; I’m sure my sudden intake of breath did little to calm her. But the needle was in and out in a jiffy, with nary a drop of blood to be found anywhere (making the placement of the little square Biogen-Idec bandage rather uncertain), and then my lovely wife exited after a quick kiss to assess what level of catastrophe we were facing.

Six months! I wonder what it will be like to look back at my little journal and remember when all this was so new. If I am very fortunate, perhaps someday I will find it in a save box and recollect the time before there was a cure for MS. I’m not sure whether it actually counts as a step towards a cure, but two weeks from now, I’ll start using the syringes with the new luer-lock connectors instead of the current friction-fit ones. Even such a small improvement is encouraging. Hey, even if they don’t find a cure, maybe they’ll develop nifty flying robots to do my weekly injections, perhaps while simultaneously quoting Shakespeare and mixing up a delicious chocolate milkshake.