Medicine

25 01 2009

Some things just stick with you.

Once I worked for a company called Pharmaceutical Product Development. We served as the medical information department for Genentech, one of the biggest drug developers in the United States. Much of their product line centers around oncology. My job was to field calls from various health care professionals with questions about Genentech’s drugs and then direct those callers to the appropriate Pharm.D. to answer their questions.

It was a great job. I think I could have worked there a long time if PPD hadn’t closed its call center in Colorado. Over the course of that job, I learned more about cancer than I ever wanted to know.

The most challenging part of the job came when I was promoted to the Clinical Trials line. It’s a phone number for people to call when they have cancer, have failed to treat it successfully using treatments already on the market, and are hoping to gain access to experimental drugs by participating in a clinical study. My job was to screen these callers using some basic criteria, then to direct them to an available study if they might be eligible to participate. When Genentech started expanding their clinical trials, our call volume picked up rapidly. We hired quite a few temps to keep up with the volume, and the responsibility of training them fell on me.

While training a couple of nice, middle-aged ladies, I took one of the most difficult calls of my life.

The woman was calling because her mother had been enrolled in one of Genentech’s clinical trials to treat a brain tumor. Before the study, she had been through chemotherapy and radiation. Nothing had touched the tumor. After enrolling in the trial, her mother’s brain tumor started to shrink rapidly for the first time. The family was thrilled. Several months into the trial, however, her mother started to develop large blood clots in her lungs. This was considered an exclusion criterion that prevented her from being allowed to continue in the study.

Following this turn of events, the woman was calling to see if there were another clinical trial in which her mother could participate. Sadly, I had to explain that this was impossible. Once excluded from a study, there is no way to override the doctor’s decision and readmit someone into another study. She asked frantically if they could just buy the drug, assuring me that they would pay any price. With a heavy heart, I explained that this, too, was impossible. A company cannot sell or otherwise distribute (except in a clinical trial) a drug that is not FDA-approved.

Her anger and frustration were fierce, but completely understandable. She wept loudly. “So you’re telling me,” she accused, “that your company has a drug that I know can cure my mother’s brain tumor, a drug that could save her life, and you won’t give it to us?” I told her with every ounce of sincerity in my being that I was so terribly sorry, but that there was absolutely nothing we could do.

When she hung up, the two trainees who had listened in on this call stared at me, horrified, wondering what kind of work they had just gotten themselves into. It took a long coffee break for all of us to recover from that enough to return to training.

That phone call has stayed with me to this day, and I’ve found myself thinking about it quite a bit lately. A few months later, after our call center had closed, the drug in question was approved by the FDA — not for brain tumors, but for a different form of cancer. At that point, the mother’s physician could have determined to administer the drug and would have been able to obtain it for her. I’d like to imagine this is what happened, but the advanced stages of cancer move quickly and it’s most likely that the woman’s mother passed away before the family got this chance.

I can’t imagine how people find the strength to work in jobs where they have to inform people that a loved one has died. It must be similar to what I experienced that day. Maybe they grow numb to it and that’s how they cope. All I know is that it broke my heart to be the person to tell the woman on the phone an answer she didn’t want to hear. How utterly frustrating it must have been for her to know that there was a potential cure but that technicalities prevented their access to it. And how I wish there had been something I could have done for her.

Recently, I read an article by one of my former classmates. In it, she talked about how the church has developed a habit of only sharing personal stories when they serve some specific purpose that advances what the church perceives to be its cause. She argued that perhaps we need to be able to share the other stories, the ones where we haven’t yet seen how God is “working all things together for good.” She said that perhaps it cheapens our larger perception of God when we refuse to see Him in anything but the more amazing moments. I think she’s right.

When I sit and think about where God was in the midst of that family’s situation, I would like to imagine that there was some happy (or at least rewarding) ending to their story. But that day, in that moment when I had to tell that woman “no,” — when I look at what that family must have been going through and ask myself, “Where was God?” I think the reality is that God was brokenhearted, too. All too often evangelical Christians downplay death too much, as if the reality of heaven completely compensates for the pain of loss. Though death has lost its sting, we are still told, “Blessed are they who mourn.”

And that day, I think God was right beside that woman on the phone, weeping Himself over the injustice that one of his precious children would be facing death too soon.

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6 responses

25 01 2009
Emily Straw

Wow this is just heart breaking. Sometimes sharing stories like this can have others look at it from a different perspective and see how God was moving in that situation. Thank you for sharing this!

25 01 2009
Jenn

I went to church with my parents for the Christmas holiday last year, which was the first time I’d been in probably 5 years or so. There was a couple that told the story about their infant child dying in his crib from Sudden Infant Death Syndrome, and how God worked through it, etc, etc. Thinking that God used the death of their son to touch people, or it was something to make them stronger, and that He was holding their hand through it all…

IS THE BIGGEST LOAD OF CRAP I’VE EVER HEARD.

I’m sorry, but all that is, is holding on to a crazy idea to make themselves feel better about it.

Now, if that works for them, fine, whatever.

But don’t tell me that God uses the death of a loving mother to Cancer, or a new born baby to Sudden Infant Death Syndrome, or a little girl who gets abducted, raped and mutilated… for HIS good. It’s a silly story people hold onto, that churches tell their hurting congregations, so people don’t lose their minds, kill themselves, or just feel extra super bad about things. Same idea as heaven as far as I’m concerned. “Well, we’ll see her again one day.”

No, you won’t.

Okay, sorry – I’m sure that just pissed off all your readers.

It’s just how I feel.

~J

25 01 2009
Rob in Gallup

Jenn, if you went where I think you must have gone, that means you and I visited Grace Church on the same weekend. I went to the middle service on Sunday morning because my brother invited me. I would have been so weirded out to bump into you at a random church that neither of us attends.

Anyway, I saw that same video. I have to be honest, that whole church service was a major turn-off for me. While I don’t necessarily doubt the well-intentionedness and sincerity of the couple in the video, the whole thing felt (to me) like it exploited their tragedy into a Christianity commercial. (And I also happen to hate that “Christmas Shoes” song with a passion.) Everyone else seemed all teary and touched, and then there was me, raising my eyebrows, saying, “Seriously?”

I guess I don’t hold it against all those people. I’m not going to begrudge them the right to express their faith in the way they prefer. But that version of Christianity is really just not for me. And the point I was trying to make, which the aforementioned classmate of mine did a more eloquent job of stating, was that I think stories in which “God working through it” or “God using the tragic situation for good” is the single required element only serve to cheapen the overall perception of who God is. It reinforces the argument that religion is a crutch for those too weak to accept the realities of life.

For the pain to be fresh enough for them to cry the way they did in the video, I have a hard time believing that they’ve reached some happy-ending point of recovery already. What happened to them sucks. It should never have happened. They have every right to be angry. And I would have much preferred that same story from a more realistic perspective, one in which (as I also think with the cancer lady) God is equally heartbroken by the injustice of it, as opposed to causing or allowing it in the execution of some great plan that mysteriously involved the death of their baby.

I don’t buy into the idea that God makes or lets people die as a means of accomplishing his agenda. That’s crap. I will accept the idea that perhaps God is powerful enough to accomplish his purposes in the midst of tragedy, but the “God has a plan” tactic is one of my biggest gripes with the modern, evangelical American church. What about that family’s plan? They have every right to be heartbroken, and I think it’s a cheap ploy to drive dollars into churches if you try to paint God as anything other than brokenhearted about it himself.

If you buy into a bibical view, which I personally do, I don’t see how you can arrive at any other conclusion than that death, pain and suffering were not part of the original plan. It was not supposed to be this way. This world is busted and broken, full of unfairness and heartache. The point of God is not that he lets it all happen or makes it all happen or that it’s part of his design. The point is that he is in the process of rescuing the world from what it let itself become.

I don’t know, maybe that sounds like a big load of crap to you, too. In my mind, it makes a world of difference.

Oh, and no need to apologize for pissing off my readers. There is no prerequisite to think or feel any certain way about anything here. I may disagree, I may argue back, so might others. But I try not to begrudge anyone the ability to say what they think and feel.

25 01 2009
Wesley

Wow… this is a great story Rob. I used to work in a call center for VoiceStream Wireless back in the day and I thought that talking to those people was hard. Geez. Mad props to you for holding it together in front of your trainers… i probably would have lost it.

As far as God in this situation goes, if that’s what’s getting you, the family, the readers, and whoever else, through the situation, then good. Believe in it and live in it. Because the fact of the matter is – it’s what’s getting YOU through.

Thanks again for the excellent story. =)

25 01 2009
Rob in Gallup

Wesley, I think I would have lost it if I had been on the phone by myself. It’s kind of like being a parent; you try to hold it together for the sake of the kids while they’re present, but later when you’re by yourself, it eventually comes out. I think I’d be deluding myself to think it didn’t affect me since I’m still sitting here thinking about it a few years later.

26 01 2009
Leah

my 2 cents:

I was involved in that particular church service – I was the one in the choir with the very shiny sparkly red shirt. It wasn’t my favorite of our Christmas services, but I there were a few things about it that I liked. I liked that it wasn’t just a Christmas play, or just a pageant. I liked that we had an actual message that day, much like we have on a typical weekend. And yes, I was one of the sniffling people because I can’t imagine the pain of losing a child. I empathized with them and my heart broke for them – so I cried. I don’t think I came away with the same viewpoint of the video that you two did. For me it was that they could turn to God in their grief – and cry out to Him. That they could try to rest in his arms even though they wanted to beat Him up in anger. I think it was also a tribute to their small group, that they were willing to be there for them as much as possible. I agree with Rob though, that testimonies that seem to have “an agenda” can really turn people off – as evidenced here. As far as the bad things of this world being for HIS good; we live in a broken sinful world. God doesn’t kill people or cause girls to be raped. I don’t think we are trying to put out there that a molestation or murder is *for* the good. We put out there that God can use any situation to reach people. In a way, he’s the ultimate opportunist. And hard as it is for us to get, he does love every single person on this earth – serial killer or saint. And he keeps giving us a choice to choose him – every day, even if we reject it.

(And although Jared & Rick sang it well, I too was really tired of Christmas Shoes by the 5th time on Sunday!)

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