Tuesday, August 14, 2012

T.M.I.


I don't want to know the reasons why
Love keeps right on walking down the line
I don't want to stand between you and love
Honey, I just want you to feel fine.

~ Fleetwood Mac



Yesterday I burst someone's bubble. Yes. I let the wind out of their sails and even rained on their parade.

No. Not on purpose. But still. I did. And it sucks knowing that it's true.

It started off simple enough. The chart explained what was going on. A cancer that started in one place had moved to another place. Or rather other places. And those other places made my patient's body hurt and feel bad. None of those symptoms made sense until finally the doctors caring for the patient in the hospital arranged a biopsy of a spot that appeared on one of the films. A tiny needle grabbed a tiny piece of it and the pathologists confirmed what everyone hoped it wouldn't: Cancer.

And not just cancer. But metastatic cancer. Which almost always is bad news.

When I opened the chart, none of this seemed to be a secret. The treatment plan was explained in great detail and repeatedly used words like "palliative" and "widely metastatic." Which were less abrasive ways to say "unlikely to be something we can cure" and "because it's all over your body," respectively.

And I thought the patient knew this.

Not in the way that the doctors knew, but still, I thought the patient and her spouse understood. Understood that the chemotherapy that she'd been receiving was designed to fight back the cancer even if it couldn't cure it at this point. And that the radiation that her husband was driving her back and forth to receive would indeed shrink down the tumors some. But more to help her breathe better and walk easier.

You know. "Palliative." Like the chart said.

So they were in the clinic for simple things. Like, "How do we get some Boost drinks?" or "Can we get some of those circulation stockings?" And the resident seeing them stayed in his lane and addressed those things. He told me the background story, but stuck to their agenda. Leaving all the complex cancer stuff to the oncologists.

I came in the room and said hello. Shook her hand and complimented her wrinkle free skin. Her husband tipped his hat and told me he recognized me from television. His voice was raspy like Fred Sanford and I enjoyed it so much that I kept him talking just to hear it. So we chatted and bonded and built a relationship right there in that clinic.

We sure did.

Before you knew it we were yucking it up like old friends. And since we were, the exchange was easy and open.

"It sounds like you've been tolerating the palliative chemotherapy well!" I said with my hand right on top of hers. And she wrapped her fingers around mine and nodded her head.

"Oh yeeeeaaaaah. She don't even get all sick to her stomach or nothing. She tough as nails." And her husband winked right at her when he said that which warmed my heart and obviously hers, too.

"How long have y'all been married?" I had to know. This wasn't a ten year or even a twenty year love. This was one of those call-all-your-grandchildren-and-all-of-your-kids-in-to-celebrate kind of loves. One that takes time to get like this. The kind that's been bubbling on the stove for so long that the flavors have blended together just right into one perfect taste where you can't even discern exactly what's in it.

Like that.

So the husband smiled right at his wife and they both said it together, "Longer than you been alive." And we all laughed because that answer seemed to be one that they used often.

And everything was well and good and that bubble was flying high, high on the ceiling of that room.

"What questions do you have for us?" I asked in parting. Simple enough. Standard enough.

Bubble still floating.

They looked at each other and then shrugged. "I don't got na'an," the patient said. "I thank he told us what we needed to know." She glanced at my resident and beamed. He did the same.

"You know what? I did have one question," her husband spoke. As he said it he snapped his fingers as if trying to remember something. "What do. . . what you said it was? What do it mean when you call it PALL-A-TIVE chemo? What do that mean?"

I hoped I'd heard the question wrong. I mentally crossed my fingers and clarified that query. "Palliative?"

"Yeah, ma'am. Is it something different about the chemo if you call it PALL-A-TIVE? Cawse I heard that a few times from the cancer doctors and you said it, too. Do it mean that the chemo is stronger?"

And that's when I did it. I opened my mouth and started talking without fully thinking about exactly where they were with all of this. I took the question on and answered it--taking it exactly for face value.

I wish I hadn't.

"Palliative? Well. . . let's see. . . that means when you. . .hmmm. . .okay, kind of like when something focuses on making you feel better and calms down your symptoms. That's when something is palliative."

"So why ain't all chemos considered PALL-A-TIVE then? Seem like they all should do that for you, don't it?" And her husband innocently laughed when he said that part. She did, too.

Bubble still floating.

"Hmmmm. Here's a way to think of it. Depending upon where the cancer is. . .meaning like what stage it's in . . . .that's how they know what the best treatments are. Sometimes if a cancer is caught really early or before it moves anywhere, they can give chemo or do surgery or radiation to make it go away for good. But sometimes if it's in other places--or advanced--the chemo will slow it down and help you feel better even if it can't take it all the way away. . .that's what palliative chemotherapy does mostly."

"I don't think I understand that. You kinda confusing me with all that, doc. Go on and break it down different cawse I like to make sure I understand, you know?" And the way he said that part was innocent, too. So innocent that it should have confirmed for me that my next words would be the sharp pin that deflated their bubble.

But I missed that cue.

I wish I hadn't.

"Think of the cancer like a train. The best way to stop the train is before it even leaves the station. Chemo works best if you attack the cancer before the train conductor even pulls out of the gate. Sometimes if it's pulled out a little bit, the chemo can stop the train altogether. So stopping the train is like curing the cancer. Think of it that way."

"Okay. . . .okay, I'm with you."

"But sometimes the train left the station and has already been to places we don't want it to go to. It's dropped off passengers and it's hard stop it once it's gone. That's kind of like when a cancer has spread to other parts of the body. So the chemo and the radiation is aimed at slowing the train down even though it probably can't stop it. The medicines help with the symptoms and keep the train from wreaking havoc and making you feel bad."

His eyes flung open wide. That's when I felt the dread swirling in the pit of my stomach.

*POP*

"But y'all CAN stop this train right? Altogether, right?"

"Sir?"  And I know that sounded stupid because I knew exactly what he was asking me.

No. We can't stop it. We can't! We want to stop it. For you, for her, for your whole family but we can't. We can slow it, yes. But not stop it. 

That's what I wanted to say but I'd already said enough.

"Is that what PALL-A-TIVE mean when y'all keep saying that?" He was staring at me and blinking hard. She was silent and simply looking in his direction. "So what happens when the train jest keep on moving? Eventually seem like it's gon' wreck."

Wreck? I kicked myself for what I thought was an excellent metaphor. But, really, he was right. Cancer that can't be treated is . . . a train wreck. And train wrecks never end well.

My resident tried to help me backpedal a bit, but the bubble was now in a heap on the floor.

The rest of the encounter was heavy and sad. This happy couple of more years than I've been alive just learned that their days together would be numbered. And not just numbered in the theoretical sense that all of ours are but that real, concrete sense that hurts somewhere deep, boring  and unrelenting.

Damn.

Before I left the room, I looked at them both and said what was on my mind. "I'm sorry." I left it there. I wasn't sure what else to say. I felt so suffocated by the enormity of it all, the power that something as tiny as one person's tongue can hold and how it could change an entire outlook in the twinkling of an eye..

I hoped for an obligatory statement from them to reassure me. It never came.

"I would have been okay jest thinking the train was gon' stop. Even if it wasn't," she said quietly. And when she said it, she couldn't even make eye contact with me. What's worse is that for the first time in that whole visit, she couldn't even look at her husband either.

"Something about that make me feel a-fred. Something about 'no cure' and 'jest pall-a-tive' seem so. . .  final." His voice was tiny and all of that raspy animation had floated right on out with the air of that once lofty bubble.

And all I could do was sit and stare and wish I hadn't said as much as I had said. Or that I'd said it differently. Or that this wasn't their reality. Or that I could be comfortable with just letting someone not know what we were saying about them on the other side of the door. Skimming over words like PALL-A-TIVE with the understanding that doing so might be far more palliative than knowing the truth.

I guess.

So yeah. I cried on the way home from work. Which I do often. And that's okay because something about it feels cathartic and like it honors my patients and what they go through. And you know? I don't even know what my point is of telling you all of this or what the answer is to any of this. I just know that sometimes no news is good news and that on some days being a doctor is hard as hell.

Yesterday? Bursting somebody's bubble like that? Man. That was hard.

***
Happy Tuesday.

Now playing on my mental iPod. . . 



28 comments:

  1. If being a good doctor was easy, there would be more of them.
    I don't think I need to say any more than that. Except, of course, that you are one of the goodest ones I've ever known.

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  2. Tears. For this sweet couple and for the way they found out and for you being caught unaware and for how hard this all is sometimes- illness, medicine, doctoring, life.

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  3. This wasn't your fault-you just happened to come later in a series of dropped balls way before the ball got to your hands. And so-the weight of that ball was heavier when you had to plant it firmly into the hands of your patient and her family. Your analogy was beautiful for a completely unbeautiful subject. Take Care, Dear Heart.

    Maria, fellow Meharrian

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  4. I find this to be the hardest part of medicine Dr M, being the bearer of bad news. But even with all its shades of grey,I wouldn't swap this profession for anything else in the world. And neither will you.

    Big hug!
    --Tara

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    Replies
    1. Right back atcha, Tara. Mmmmmmm! Aaaaah. Now I feel better.

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  5. Dr. Manning, it has been my experience that Oncologists wish not to make their patients "lose hope". So they will tell them about their cancer and what treatments they will be receiving, but they don't reveal the whole situation. In cancer, the ability to delude ourselves is outstanding. We cling tightly to the hope that we can be cured. That's why you see the families of 90 year old patients bringing great-grandpa in to the infusion centers for chemo, not understanding the brutality of the medications. It sounds harsh, and it was a bad situation for all of you, but you probably did them a great service. Now they can prepare. They can kiss those grand kids one more time and give that necklace to a daughter. Now she has time to say goodbye. If my cancer came back, I'd want that. I cried when I read this and I'm crying as I'm typing this. As much as it hurt, I think you gave them a gift.

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    Replies
    1. Oh Lisa. Thank you for these words. I have to admit--it doesn't feel like I gave them a gift. It doesn't at all. But really I just want to learn and think and grow and try. I want to do better and I want to honor my patients by at least not forgetting them when I walk away.

      I haven't stopped thinking about them since I left.

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    2. I understand that it didn't feel like a gift. It is hard to be the messenger of bad news, especially when you weren't prepared that you'd be the one delivering it. I have prayed forgiveness over the doctor who told me "You have six large tumors in your left breast, and I'm 99% certain that they are cancer." many times. He was an innocent person in a bad spot. I do not want him blaming himself for having to tell me bad news. I appreciate his directness. I understand that hope springs eternal, but it shouldn't. There is a time when having your feet on the ground is a huge asset. He used it.

      The bottom line is that we will all die. This is the road home. Maybe not the one I would have chosen, but the one I must walk. I won't walk it alone. You gave them a frame to work in.

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  6. This brought back a lot of memories with my dad passing of lung cancer last Nov. Afterward i realized the doctor was selling us hope but all along he knew the ending and I was a little angry about that. But after I thought about it for a week or so I thought why not hope...that is what we wanted. We knew the statistics etc....we wanted hope. It is a tricky situation...my dad never ever gave up (much to Hopsice's chagrin...yes, we had hospice and hope) and we supported him to the very end with whatever he wanted to do. It ended up that the chemo bought us six months extra time that was good and none of us would change a thing...so always give hope..maybe not for a cure but for life...for precious moments...for love. You are that kind of doctor.

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    Replies
    1. Hope springs eternal. Thank you for telling us about your dad. And thank you for being here.

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  7. What Lisa said. Even though I know it still hurts.

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  8. I agree whole heartedly with Lisa. I do this every day and although I don't ever want to take away someone's hope, I do think readjusting expectations is honest and yes, a gift. I cry for those that aren't prepared for what might come next. I have never walked this walk as a patient, but I think I would want to be told honestly what my options are and what the likely outcome will be. No one can promise anything in this business, but I do not think we do our patients any favors by not telling them honestly, gently, honorably but truthfully what palliative means or when we are going for controlling the disease rather than cure. Thanks to Lisa for a patient's opinion. You had a hard day Miss Manning, but you handled it well as always.

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  9. You are absolutely Awesome, with a capital A, and I don't use that word lightly. I believe what Lisa said is profound. You have given this beautiful couple a gift that they will most likely come to appreciate and cherish. You did it, although unintentionally, with compassion and with grace.

    You raise the bar that I wish all doctors could meet.

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    Replies
    1. Well just. . . damn. I appreciate these kind words.

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  10. Well darn. I am weeping again. I have never received so much support for a comment. It was Dr. Manning who stood in that room, and she bore the brunt of the situation. I think that maybe God set the situation up...yes, I do. Dr. Manning, you rock.

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  11. Wow. This touched me today. My best friends older sister died yesterday of cancer. On Friday after she went in to hospice they told us she had 5 to 7 days. She only made it three. Either way, we were as prepared as you can be. As for your patients, you did your best, honestly and graciously. You are a wonderful doctor

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  12. I've missed reading your blog. I haven't in several weeks. This reminds me why I've missed it so. Very touching post. I appreciate being able to read it.

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  13. Hello,
    I am a hospice nurse in the mountains of Colorado and feel for you. I have been in your shoes and gotten the order to "TELL THEM THEY'RE DYING" when I call to report symptoms and ask for treatment. Life is hard. On Sunday, I got to be at the sweetest, peaceful death and just counted my blessings and thanked the family and went home and cried. I think it's part of the package of helping people in the time of their most intimate moments. I am honored to be there most of the time as I sense you are too.
    Thanks for your honesty and personal care.
    Terry

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  14. As hard as it is to be the person delivering that news, I think it's an essential thing to do. Patients and their families deserve to have the opportunity to do and say the things that they want to before they die. I've seen many physicians who have been dishonest with their patients about their life expectancy, and I think it robs their patients of one of the most important stages in their lives.

    That being said, I've had to tell a few patients recently that they have metastatic cancer, and it's a horrible awful thing to have to do.

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  15. You are a really good doctor and that is so rare in this day and age. Remember to take care of you, too. x0 N2

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