Friday, January 30, 2009

The Enbrel Diaries, Part I

For the second Thursday in a row, I sat last night with a piece of plastic roughly the diameter of a large ball point pen pressed against my thigh. I had goose bumps. I was shaking and sick to my stomach and in fear that my Enbrel had sat out at room temperature for over 30 minutes and now, according to the nurse, "we can't assure stability" of the medicine. Every second was contributing to a break down of the thousands of dollars worth of mouse proteins in the auto-injector.

"Pull the trigger" I kept thinking, a line from a Queensryche song. Since the main character of their two concept albums was a junkie, I have plenty of injection references in songs that run through my head. "Don't ever trust...don't ever trust the needle" was the refrain that used to go through my head when learning to inject methotrexate.

I tried deep breathing. I tried yoga. I felt the muscle freeze, the same freeze that I've known so well all of my life. I remember it from junior high when we went repelling off an 8foot wall for P.E. I couldn't let go of the rail. I remember it from summers standing at the side of the pool, unable to jump. I fought it hard during my two years of martial arts in college. I remember it from AmeriCorps, from being perched on some rock or cliff at an impossible angle and Brian or Pam saying, "just jump."

When I was sixteen, I started what would be a life of getting poked by needles, but then it was always someone else doing it, not me. At 100 lbs, there was no place to put most of the needles except in the rear, so I would stand there, leaning on one leg, weight off the leg that was connected to the side the nurse approached, and leaning on thin, damaged wrists. I would close my eyes and repeat song lyrics -- anything rhythmic, anything to keep me from jumping and tensing the muscle. My favorite was Queen's Bohemian Rhapsody "I see a little silhouette-o of a man...." The cortisone shots always burned so badly, I could feel the medicine spreading out like a web from the shot. The gold shots just hurt -- the needle was so big in diameter that I could see through it. And I was so small. But in 1995, I switched from my gold and plaqunil to oral methotrexate. The weekly visits to the student health clinic on campus where I got stuck and peed in a cup on Mondays and then returned to get my shot on Tuesdays were over. Just the methotrexate liver panels now.

I always just looked away and squirmed at the weekly, then finally monthly, then quarterly blood tests. After about 10 years, my veins had enough and liked to roll and hide while flustered technicians chased them by wiggling the needle. I soon learned to drink gallons of Gatorade before a blood test, which provided ample hydration for any urine tests too -- sometimes I was so hydrated, I feared the shock of the needle would make me give my urine sample a bit too soon.

I remembered that feeling as I sat there, on my toilet with the lid down, auto-inject or whatever they call their trademarked pen pressed into my goosebumped flesh. Was the paper thin insulin needle that I use to inject methotrexate this hard to learn? It's been two years since I got tired of puking all over two continents and switched to indictable methotrexate -- rat poison that will eat my skin if I don't inject it deep enough. I now have plenty of padding and choose to use my stomach flab as a cushion in a bizarre tribute to my Aunt Donna, who I used to watch inject herself with insulin in her stomach. I remember now holding that needle inches above my skin, thinking "1 -2- 3 NOW" and not moving, or pounding my skin twice or three times with a fist before giving the shot, like I'd learned to do by watching the vets inject my horses.

But Enbrel burns. I have to hold the pen there and not move for 15 seconds as it burns my leg. I know this. My fear last week was that I would jump and mess up thousands of dollars worth of medicine. I squealed as the medicine went in last week, but also with triumph knowing that I was doing it, I was causing this damage to myself and tolerating it. This week, however, the fear was just the act, the pressing of the plunger, the 15 seconds of pain and burring, the paralysis of my muscles that would not press a button.

I'm reminded of being perched on a cliff in Point Reyes, overbalanced, unable to move back and correct myself, unwilling to shift my weight forward for a foothold that might not be there. Pam, Brian and I went out to see a whale. It was the last week of my last year of what I now consider a separate life. Between one life -- a life where I ran races, clamoured over cliffs to see whales, built trails, believing my rheumatoid was simply a matter of will -- and another, which I couldn't see and couldn't know for sure the safety of the footholds, if the hands would grip the rock or if an ankle would turn and send me into the ocean -- I was paralyzed.

I think of that whale, that rock, as I sat there. "I see a little silhouette-a of a man..." I thought.

And sometime later, I pushed on the plunger. The Enbrel stung worse than last time but not as bad as I had imagined. Then the auto inject popped again and it was over.

Until next Thursday.

Sunday, January 4, 2009

Narrative medicine

I'm finding out that narrative medicine has been talked about before, by smarter people than me.

From the New England Journal of Medicine:

No, I can't read the full text either.

By the same author:

BMJ : Information Needs of Doctors, dealing more with clinical info, not patient info.

Someone else has addressed the fact that medicine for the chronically ill, and even for the acutely ill, is a process of gathering the information, making a story out of what is messy and not easy to follow.

We need the book-jacket summary for quick office visits, the War-and-Peace volume for really understanding, for instance, if my little sister has MS or something else, or if I should give up methotrexate to one day be able to have a child. These are not simply clinical questions. These have layers and threads. Did the concussion my little sister have affect her balance? Is her dizziness possibly a result of failed Lasik surgery?

I'm going to work on some sort of organizer for her.


I need something.... a missing product in the patient organizer market

Between me getting to know a new rheumatologist, my grandmother's medical hell, my little sister's struggle with suspected MS, and now my father-in-law's diagnosis of terminal cancer, I'm finding that many people in my life are facing many new doctors. And most of us don't have a doctor like House who will become intellectually challenged by our various symptoms and try to pull them all together. What we have is a scattered medical history and the 15 minutes of face time with a flustered doctor.

I've written about pulling my health records into one place. But my doctors are not going to read hundreds of pages. I know this. And, god bless Dr. S., but I just paid $50 for my records and can't read a damn word. I miss my old fashioned rheumatologist who used to dictate and type everything.

What we need is a way to compile a narrative -- a quick 1-2 page summary of what's going on that a doctor can skim over. That admittance paperwork at the dr's office (you know, the "check if you've ever had a cold" type thing) is supposed to accomplish that, but we usually fill out as quickly as we can so that we don't hold up the appointment.

When I met my new rheumatologist, I typed out 2 pages for him -- a quick summary of medications, medical conditions, and what my treatment goals/questions were for him. He skimmed it and gave it back to me. (Have I mentioned that I'm giving him one more shot before I seek out my old rheumatologist's office in Kc? Yeah. )

For my grandmother, who has a history of all sorts of strange fainting spells that are getting increasingly worse, and my sister, who has a variety of vague auto-immune symptoms, sorting through the important info and the non-important info is a huge job. My father-in-law is also having the same struggles with his doctors -- his cancer goes back to 2001. But his joint pain symptoms are new and possibly unrelated.

It's also difficult to quantify what exactly the doctor has said -- even people in the same room hear different things. That makes it impossible to carry that info to another doctor. In a hospital, it's hell -- every new person coming by the room says something different and we don't remember who or what.

There are patient journals that carry this sort of generic info for kids -- major hospitalizations, immunizations, etc. I've seen diabetes and wellness journals that track day-to-day mood and food. I'm going to try to work on a hospital/treatment book that keeps a running narrative for the patient and attempts to provide some cohesion. Watch this space.