Saturday, January 18, 2014

The bitch is (sort of) back

I think that the careers we choose for ourselves are partially based on our personalities, but also shape our personalities.  To wit, I am a lawyer.  [Yes, I also have a masters in library science and I really, really want to be a librarian, but I have been a lawyer for 10 years now and that's still my profession, so that's what I tell people I am].  I am a lawyer in some respects because of aspects in my personality that made that profession suitable for me - I am logical, curious, and I like a friendly argument.  The point of law school, to some extent, is to hone other aspects of your personality to make you a better lawyer.  The purpose of boot camp in the military is similar in some respects - they want to rebuild you so you always look at the world a certain way.  Even though I'm not a litigator anymore, there are things from my legal practice that shape how I look at and function in the world.  I doubt that will ever change, and that's okay with me because it can come in handy in everyday life.

This week, I decided to change my perspective on Manuji's clubfeet situation.  But to get there, I need to go a little farther back.  In 2009, I was living with my dad.  For years and years, he put off getting a colonoscopy.  He had heard the process of clearing your bowels was unpleasant and he was scared.  So he put it off.  Big mistake.  His doctor finally convinced him to do it, partially because his blood work came back as slightly anemic which can be an indicator of an internally bleeding tumor (fun).  I totally didn't expect them to find anything on the colonoscopy.  I did zero research.  I mean, he had no symptoms!  Shouldn't someone with colon cancer have symptoms? (answer: no.  My dad had stage IV cancer at the time of diagnosis and no symptoms.... it's really important to go for regular colonoscopies, guys).  As we talked to the gastroenterologist after the colonoscopy, it became clear to me that my lack of preparation meant we were really out of our depth.  He used lots of medical jargon (I would periodically stop him for definitions, but still).  Long story shortish, the doctor could not get the scope past my dad's sigmoid colon (a lower part of your large intestine) and it could possibly be the start of a blockage from something serious, or it could be nothing.  He wanted Dad to get a CAT scan of his abdomen.

A few days after that, the doctor called Dad and told him that certain markers in his blood were elevated.  Again, because I was new to this and hadn't done my homework, I didn't know what that meant, but it seemed ominous.  What I know now is that the doctor was telling Dad that his CEA tumor markers were very elevated.  This generally indicates malignant cancer (CEA is a marker thrown off typically by colon, rectal, and pancreatic cancer cells).  These tumor markers are how we measure Dad's progress with treatment when he's not getting CAT scans.  But we didn't know or understand any of that at the time.  The doctor didn't explain it and we didn't ask.

Two days after that, Dad woke up one morning with an enormous, distended belly and in excruciating pain.  His giant, malignant sigmoid colon tumor was blocking his intestine, which is obviously life threatening.  That day he had bowel resection surgery and a CAT scan that showed the tumor had metastasized to distant parts of his body.  It was the second worst day of my life, an extremely close second to my mother's death.

As I sat in Dad's hospital room, waiting for him to come back from surgery, I promised myself that I would never get caught flatfooted again with a doctor, that I would do research and I would know everything I could about Dad's cancer so I could be an informed and pushy caretaker.  When you take a deposition, especially of an expert, you need to be become an expert too.  

To me, the sign of a good doctor is someone who doesn't use medical jargon when speaking with a patient, who explains his or her rationale for whatever treatment plan is recommended, and who doesn't mind (actually prefers) an informed and inquisitive patient. I get along well with Dad's cancer team because they are all of these things.  But I never go into an important appointment without questions and information.  I trust them, but that doesn't mean I can chill out in the backseat.

This whole time in my pregnancy, I've been acting like I was the patient.  I am way too lax with my own care.  Jeeves and I were caught flatfooted when we went into that initial anatomy scan because we weren't expecting bad news.  I had lost my game.  It's not that I think I should have been an expert on clubfeet when we went into that appointment - there are so many problems that can crop up at these scans, there's no way to know about all of them.  But I should have gone in there with my lawyer pants on and I didn't.  If I had, I would have immediately started firing questions at the irritating ultrasound doctor, and I would never, ever have let her get away with that sloppy "I think there's a 30% chance that the baby has clubfeet."  Instead I stumbled out of there like some rube.  Because I thought I was the patient.  

So this week, I decided that I would stop acting like I'm the patient and start acting like Manuji is the patient, and that was the kick in the pants that I needed.  Lawyers are trained to be precise in their language - it's what makes or breaks us.  Doctors are not precise in their language (they may be precise in many other ways, but language ain't one of them).  So from now on I would start questioning anything that sounded like it needed further defining.  I wouldn't allow any more sloppy statistical bullshit without finding out exactly where those numbers were coming from.  And I was going to grill my OB about what had happened.  

I think if you're a lawyer, you would find me, my approach, my demeanor, all of these things perfectly normal and recognizable.  I think if you're not used to it, you might find me to be a little bit of a bitch when I have my lawyer pants on.  I don't really care - my doctor is hired to perform a service for me.  She is not a god.  She is not smarter than me, she's just trained in a different area.  And if she's going to use imprecise language or dumb, made-up statistics, we're going to double back to that and talk about it.  Repeatedly, if necessary, until I get to the truth or at least some facsimile thereof.

Jeeves and I went into our appointment with my OB this week with a very long list of typed up, multi-part questions.  I don't think she was expecting it, probably because I've been so laid back about my own care up to this point.  It does feel weird to be doing it for myself, and not for my dad.  But I kept reminding myself that Manuji was the patient here, and that made it a little easier to be difficult.  At one point, my OB used the term "false positive" incorrectly, and Jeeves and I jumped all over her for it.  In the end, I felt good about the answers we got.  We won't know jack until these scans are done, but at least I feel a little more confident in what's going on.

At the end of the appointment, Jeeves said, "If that had been a deposition, it would not have gone well for her."  Indeed.  But that's my job.

3 comments:

  1. I hate that you're having to worry about Manuji, however I love your approach. I have always found that being educated was the very best way to approach health issues (and many other things). A doctors knowledge is limited. It's so so so important for us to know what's happening and what to expect going into the appointment because, sometimes, our doctors DON'T know what's best or don't have all the info. Not to discredit everything they do know, but it's really difficult for one person to stay abreast of the hundreds/thousands of medical conditions. Sometimes, it's our job to fill in the blanks.

    I'm glad you were able to get some/most/all of your questions answered and feel a bit more in control. And I hope the tests come out all clear, but if not - then at least with something that's treatable. You can handle it, but hopefully you won't have to. I'm thinking of you!

    ReplyDelete
  2. I agree so much with this! Especially about a doctor who cuts all the mumbo-jumbo out and tells me whats going on in plain English! Always thinking of you and praying for Manuji!

    ReplyDelete
  3. Good for you! Sometimes I let myself get flustered with doctors, and I always regret not standing up for myself. I'm an intelligent adult who is able to ask questions and advocate for myself—there's no excuse for the quiet nod-and-move-on I do sometimes. It's my health, and no one is going to care more about it than I do. Anyway. Good for you <3

    ReplyDelete