It is good to ask questions. Even when the answers aren’t always pleasant—especially when the answers aren’t pleasant.
No one likes to ask questions when things are going well. My first months on daclizumab went really well, so I didn’t bother to ask my nurse about the origin of the clear liquid dripping down the IV tube into my veins. Whatever it was, it was working. My multiple sclerosis symptoms were fading into the background. I couldn’t ask for more than that.
So I didn’t.
Month after month, I had the same nurse arrive at my home for infusions. We took to chatting. The heparin scandal came along, taking the lives of 81 Americans who had assumed—as I’d assumed—that nothing fatal could be lurking in a labeled medication. That month, the nurse told me it wasn’t necessary to flush my veins with heparin. I gave her the go-ahead to use it anyway. I didn’t want to mess with success. Eventually, though, I think we may have agreed to skip the heparin flush. Daclizumab kept on working, either way.
The January 2010 home infusion seemed no different than the others. Neither of us knew it would be our last. As usual, my blood pressure was low, as was my temperature—96.8. As usual, I had no troubling new symptoms to report. The drip itself never took all that long—maybe 15 minutes— and as usual, the nurse and I chatted those minutes away. The nurse mentioned she’d seen me lifting weights at the rec center while she’d been walking the track. I told her it would be OK to interrupt me the next time she saw me there. Neither of us could have guessed there wouldn’t be a next time.
I didn’t start to feel funny until the nurse was gathering her bags to leave. Even then, I didn’t feel funny enough to stop her. My temperature shot up during the interval between the thud of the front door and the clap of the screen door —the screen door hinge is on backward, which makes for a thirty second delay.
I headed straight for the couch, and caught a glimpse out the window of the nurse’s car pulling away. I lay down. Something wasn’t right. At that time in my life, it was unusual for me to lie down while the sun was still shining. I dragged myself off the couch and up the stairs to take my temperature. 98.8.
I wasn’t sure if I should call the nurse. Everybody knows 98.8 is not a fever. But 98.8 was two degrees higher than my temperature of just half an hour before. I was comfortable with that nurse. Even so, I didn’t want her to think I was a big baby. Or a hypochondriac. Or a fool. But then I got to wondering about the contents of that IV bag. Who was to say it wasn’t tainted, like the heparin a while back?
I swallowed my pride. I called the nurse and left a message.
It was a good thing I did.
The high temp resolved itself without any apparent consequence. I felt sheepish when the nurse returned my call that afternoon. But then I heard her news. I quit being sheepish, and shifted into high alert.
Apparently, after listening to my message, she’d called the pharmacist to ask about my drug.
“Guess what he told me? He said I just gave you the last of that medication. It’s been taken off the U.S. market.”
I asked if there’d been another safety scandal. She assured me there had not. “Someone’s bought the entire inventory.”
I wondered aloud, “When was anyone going to tell me?”
The nurse didn’t have an answer for that.
If I hadn’t gotten that little spike on my temperature, I could have easily gone another month without knowing I had to line up a new MS medication. I’d already gone through all the standard MS meds, with no positive results, which was why I was taking an off-label drug in the first place. I didn’t know what I would do without daclizumab. There wasn’t another drug out there I knew of.
There’s a happy ending to this little anecdote.
Yes, it’s true I didn’t get the answer I expected when I asked about my medication. But that unexpected answer motivated me to ask more questions. I managed to track down Bibi Bielekova, the neurologist and researcher who had first put me on daclizumab. She had a new gig at the NIH. I sent her an email on a Saturday, asking for her guidance. She replied almost immediately.
Once again, I didn’t get the answer I expected. Her email contained an offer I couldn’t refuse.
As it turned out, Dr. Bielekova was the one who had gathered all the remaining stock of daclizumab. She’d just negotiated a clinical trial for the next generation of daclizumab, called DAC HYP. She would be switching her patients who’d been on daclizumab long term to this new preparation. She wasn’t sure, but she thought she might have an opening to accommodate one more patient in the trial. My flights would be paid for. Then came the clincher, “The care at NIH, including the drug, is free.”
Now you know how I can afford to make all those trips to DC; I happened to ask the right question of the right person at precisely the right time. I’m going to try to make a habit of that.
My next entry will be a review of the formidable book, Dangerous Doses, written by Katherine Eban, another woman who isn’t afraid to ask questions about medications. The answers she’s uncovered may disturb you. Or they may just motivate you. Dangerous Doses has certainly motivated me. Our drugs are too important to remain a mystery.
Posts Tagged ‘Daclizumab’
It is good to ask questions. Even when the answers aren’t always pleasant—especially when the answers aren’t pleasant.
“Lies are what the world lives on, and those who can face the challenge of the truth and build their lives to accord are finally not many, but the very few.” -Joseph Campbell
When I first went on daclizumab, I was euphoric. After going through six neurologists, and three MS medications, I finally found a brilliant neurologist who had uncovered an off-label medication that appeared to actually work.
My husband remained unmoved. He girded himself for every outcome, including the possibility that the medication would fail.
I shared his neutrality. At first. But then daclizumab surpassed my expectations. I had wanted nothing more than a medication that would prevent further exacerbations. What I got was a medication that did all that and more. Suddenly, I felt…able. I was able to hike and swim and lift weights. So I did. I pushed my suddenly able body to astonishing new limits. I rode the wave. I soared. My husband stood steadfast, like a beacon on the shore. He appreciated my toned body, but he didn’t expect it to last.
Indeed, it didn’t last.
No body lasts.
Years passed. My physical capabilities became less and less astonishing. I had very much enjoyed becoming super-fit. As my physical parameters kept shrinking, I kept pushing back. It was with great reluctance that I finally learned to stop wanting more of my body than it can deliver.
This week, my hard-won acceptance was put to the test. I would have to also learn to stop wanting more of my medication than it can deliver.
The moment of truth arrived on Tuesday. I finally received the news my husband has been girding against ever since I started taking daclizumab, shortly after Tysabri was pulled from the market in ‘05. In all that time, my MRI’s have always come back with no further lesions. I’ve been lucky.
I’ve kept up on the preliminary results of the daclizumab trials, and while they are impressive, I couldn’t help but notice there hasn’t been a 100% cessation of disease activity across the board. Something had to give.
Now finally, something has.
My latest MRI came back with one enhanced lesion.
Just one little lesion, located in the so-called “silent area.” My local neurologist doesn’t think one lesion would be worth attacking with steroids. (And I must say, I’m relieved.)
The news of the MRI didn’t shock me. It was almost a comfort. I already knew I wasn’t well. It actually felt good to have some confirmation that there was a reason, even if that reason was inconveniently screaming from the “silent area.”
Daclizumab has worked wonders for me. But it is what is. It’s a medication—the best I’ve ever taken. It is not a miracle. It is not a cure.
Daclizumab is fallible. Just like me. That doesn’t mean it’s a failure.
I’m glad I haven’t been afraid to hope. Hope did me no harm, after all. Yes, I was once euphoric, but with good reason. I’d been given a reprieve. When the facts changed, I didn’t break. I changed along with them.
It’s been a good ride.
Today a specialist asked me if I had a certain personality.
I may have responded with an arch look.
He rephrased the question. “How would you describe yourself? Your personality? ”
I knew where he was going with that line of questioning. He wanted me to confirm his at-a-glance hypothesis that I am a Type A personality. Apparently The Specialist subscribes to the popular theory that Type A personalities are more prone to autoimmune diseases like multiple sclerosis (MS.)
“Has anyone ever told you that you are a control freak?”
He has nothing to gain from this line of reasoning. Think about it. Of the two of us, who is more likely to have a Type A personality: the guy with the medical degree, or the gal with the MFA?
I countered, “I think that’s just blaming the victim.”
I don’t (necessarily) have a bad personality. I just have a bad disease.
The Specialist kept describing the Type A personality. “Do you set goals for yourself?”
“Sure I do. And maybe I’ll accomplish all of those goals in a day, and maybe I’ll only accomplish only one. Or none at all. My body has the final say.”
“So you’ve reached Acceptance.”
Acceptance. I didn’t know what The Specialist would think about that. Acceptance doesn’t carry much of a cachet among Type A personalities.
I ventured, “I don’t know if that’s good.”
Though of course, I do know that it’s good. In my case, Acceptance is reasonable. All my MRI’s in the past four years have come back showing no new lesions. It’s appropriate to reach Acceptance when you’re on a drug that actually works.
The Specialist was happy to hear about the efficacy of the drug, even though he couldn’t find “daclizumab” or “DAC HYP” on his portable information device. (I probably spelled it all wrong.) He seemed more frustrated that he couldn’t shoehorn my personality into his Type A hypothesis. He kept trying. He listed high achievers who had autoimmune diseases. Montel Williams’ MS. Michael J. Fox’s Parkinsons.
I could think of one other thing these guys had in common, besides autoimmune diseases. “These guys are both celebrities. You kind of have to be a high achiever to become a celebrity.”
Whereas, you absolutely don’t have to be a high achiever to become a patient with MS. It’s just not that simple. I know plenty of high achievers. And most of them are not celebrities. Most of them don’t have an autoimmune disease, either. Nor do they deserve one.
I don’t deserve one, either.
“Do you think you used to have a Type A personality, back before your diagnosis?”
Back before my diagnosis, I’d majored in philosophy. What kind of Type A personality would be stupid enough to major in a thing like that?
The kind of Type A personality who thought English majors weren’t thinking hard enough.
Have it your way, Specialist.
He proposed, “Some people think meditation could be helpful for people with multiple sclerosis.”
So now he’s “some people.”
“Meditation could be helpful for anyone.”
I’m not making a very good case for my being a Type other than A.
The Specialist is an Ear, Nose, Throat guy.
He finally got around to asking me to stick out my tongue.
“You know, thousands of years of Chinese medicine has taught them to diagnose an entire person with one glimpse of the tongue.”
I had my tongue sticking out, so I couldn’t reply. And anyway, I didn’t think of a good comeback until after I left the examining room. Here it is: “For hundreds of years, Gypsies have said they can see a person’s fate with one glimpse of the palm.” You don’t see me rushing out to consult any gypsy. I consulted my half-Chinese husband instead. My half-Chinese husband said my sharp tongue was one of the first qualities he loved about me.
So maybe there is a perk to being Type A, after all.
The Specialist had said, “Things happen for a reason.”
I agree with half of that statement. Things happen. But If you’re going to look for a reason, don’t stick your tongue out at a Chinese guy, and thrust your palm onto a gypsy’s lap. That’s just silly. None of us are so special we should waste our breath whining, “why me?”
I may have a strong personality, but I don’t think it’s so strong it could cause a disease.
While I was waiting for The Specialist, I was reading Population 485, a delightful book by a Michael Perry, a volunteer fireman. He writes, “We are creatures of myth, hungry for metaphor and allegory, but most of all, hungry for sense.”
Sometimes our hunger for sense has us gobbling up nonsense.
Perry writes, “Surely, we tell ourselves, we can’t die just because we hit a patch of pebbles on a curve.”
But as Perry clearly illustrates, we can and we do.
We identify with our problems, with our illness, with our fate, instead of detaching, and researching cause and effect.
I think I’ve figured out why I contracted MS. It had nothing to do with my personality, and everything to do with my intestinal parasites.
Surprised? So was I.
It’s a wild, random world. (Is this the observation of a Type A control freak?)
In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.