I'm Tired

I have Crohn's Disease.

It's not a big deal. I've been in remission for a few years now. Last time I had a colonoscopy there were no symptoms. The disease itself never goes away but it can be controlled, thanks to a very expensive drug called Remicade.

It's been life-changing for me.

Before I started on it, the doctor wanted to remove my colon. 

Wanted me to wear a bag for the rest of my life.

I had tried every drug, from steroids which blew up my face, to methotrexate, which I had to inject into my thighs once a week.

I hated that.

Just the smell of rubbing alcohol now makes me nauseous.

Now, thanks to Remicade, I don't have to worry about any of that.

Every two months I go to Huntsville Hospital's chemotherapy clinic  for a Remicade infusion. I'm usually there for at least three hours. The drug takes two hours to infuse, I get another drug called Solumedrol first, and then there's the whole getting weighed, answering questions, getting the intravenous, all that stuff, to be done.

You know, most of the time, I'm not even aware I have Crohn's, that's how well this drug works.

But every two months, as I did today, I come face to face with the fact I am sick.

The infusion wipes me out. Makes me pale and exhausted.

A few hours later, my heart races, like I've chugged a few Red Bulls.

Tomorrow morning, I will wake up fine. And once again pretend there is nothing wrong me.

This drug costs me than $6,000 per dose. The dosage is based on your weight; the heavier you are, the more it costs.

I am lucky because my drug plan covers it.

But many Remicade patients have been sticking it to the hospital, which is now owed hundreds of thousands of dollars from people who aren't paying for their infusions.

I feel bad for the hospital, because they're suffering in these tough economic times.

I also feel bad for patients who could wind up very ill or dead if they can't afford this drug.

The hospital has just changed its policy, now making all Remicade patients pay up front for their infusions.

I'm going to be OK. I'll just make sure there's room on my credit card, go into the hospital business office on the morning of the infusion, pay for it in advance, then get the infusion. The drug company repays me within a few weeks, my credit rating is happy, and all is right with the world.

What happens to young people who don't have credit cards? Or who do have credit cards without that big a limit? Or whose cards are maxed out?

The hospital says they'll have to "figure something out."

Isn't that nice.

Not only are these people sick, they're also poor.

Is it fair that poor people can't get the treatment they deserve?

Hell no!

I also see the hospital's viewpoint – they can't go on footing the bill forever, like they have been. They're getting screwed, too.

What's the answer?

First of all, the company that makes Remicade should be shot. There's no way this drug is worth six grand per dose. I don't care how many lives it saves – there is no need for such profit margins.

Second, the government should make it easier to people to pay for it. The Trillium Drug Plan will pay for Remicade IF all other treatment options are explored: that usually means steroids, which are the worst drugs I've ever been on, and methotrexate (a cancer drug that makes your hair fall out) and a whole lot of other shit. When you go through all of that, none of which does any good, Trillium will pay for Remicade. 

The system sucks.

On the bright side, the nurses at the chemo clinic are the very best. Jodie, Yvonne and Beth are like angels. They give the best, most gentle intravenous I've ever had. They always ask how I'm doing. They're always funny and sweet, especially to the really sick people I share the room with: cancer patients.

Spending time with these patients and with "the girls," makes me humble. 

Makes me feel guilty that my disease is under control.

Makes me feel lucky.

I see these people at their lowest, but they always show me their strength, their sense of humour, their humility.

I fall in love with them every time I meet them.

Because I'm only in the chemo clinic every two months, things change for the patients with cancer. Sometimes they're still there when I return. Sometimes they're not. Sometimes they're not there because they've gone into remission.

Sometimes they're just not there. And never will be again.

I used to ask about people. 

"Oh, how's Betty doing?"

The nurses would look sad and uncomfortable and say, "Betty passed on." And I would be mortified to have made the nurses say this in front of the other cancer patients.

So I don't ask anymore.

But I think of them. Often. 

With love and sadness and admiration in my heart.

P.S. Thanks for the hug today, Yvonne. Merry Christmas to you and your lovely family and to Jodie and Beth and their families. 

All the very, very best to all of you.