Wednesday, January 13, 2010

Red Tape and Calendrical Collisions

It took several phone calls, but finally the rudest person I spoke to* turned out to be the most helpful, and by the end of last week I had the requisite forms to request my mother's medical records. Of course one document needed to be notarized, so the kids and I had a fun 45 minutes or so waiting in the bank lobby for a notary public. I bribed them with ice cream. The kids, I mean - though perhaps if I'd brought a few extra cups along I'd have been in to see the notary sooner.

The fun catch here is that, since my mother's been dead for fifteen years, her records may not be so easy to locate. After I'd signed and mailed off the request to Hospital Records, I got a call back from her ob/gyn's office (the first place I'd called). "Well, we finally found her file. It had been purged from our office and was being stored off-site."

I'd already requested the pertinent information, but...the whole file? I'm no medical dummy, and I have quite a healthy sense of curiosity about me. Besides, as I told the nice records lady, "There's a lot of stuff in there I don't know. The sort of stuff adult daughters discuss with their mothers." I told her I'd need some time to think about whether I wanted to go ahead and request the whole file - there's the emotional aspect, and also the nifty per-page fee when a file is requested for personal use. But I've decided I'm going ahead with it, and now I'm just waiting for forms again.

My father's reports? A wee bit more challenging. I have to go through at least two layers of lawyers, and possibly a few other people, in order to get all the proper paperwork sent off to the hospital. I've provided as much information to my lawyer as I can - dates, physicians' names, whatever I know about the diagnoses - but I was a bit coy about my reason for requesting the records. " wants them. For...context for my own future medical care." I didn't want to communicate too much urgency, but now I'm worried that we'll still be in the "I'm trying to get a hold of this other lawyer" phase six months from now.

So, I'm hopeful that my mother's pathology reports, at least - and possibly my father's - will be in Nasiha's hands in time for my results appointment.

Which, conveniently, has been moved to a week later.

Back last summer, when I was scheduling these appointments, December 23 was the first available "non-urgent" pre-test counseling date available. Ho-hum, whatever, I can live with that. Then it turned out that the doctor who will be present at my results appointment (along with Nasiha) does said results appointments only on Friday afternoons. I don't know why, exactly, but I suspect the rationale behind this is to force people into a situation where they are not going to the appt and then rushing back to work, but rather have a weekend "off" to process the information.**

Thank you very much, but how about if you let me decide when the least stressful part of my week is? Friday afternoon in the winter is not exactly the most open time in my schedule, what with that whole Shabbat thing and all.

January 15, the earliest Friday when they could reasonably have my results (allowing for some end-of-December delays), had only a 3:30 appointment slot. No can do. January 22, as long-time readers will know, is my children's birthday. Not (potentially) sullying that day, and we'll have family in town. Won't do to come home to in-laws. I'll want quiet time to decompress and digest, no matter what the news. So we went with January 29, and I spent the intervening months talking myself into believing that everyone waits five weeks or more for this sort of thing, it's no big deal, whatever.

But it is a big deal.

And now I'm waiting more than five weeks, because a rare opportunity has popped up for the 29th, the sort of thing I can't reschedule and also do not want to sully (like my kids' birthday). The sort of thing that also will interfere with decompression. I felt like a madwoman calling Nasiha to reschedule for a later date, but once she heard my reason she concurred that this was the right move.

But she also said stuff like, "I can't give you your results over the phone," (I hadn't asked) and "We don't even open the envelopes with results until the day of each person's appointment." Great. So now not only did I tack an extra week onto my waiting, but I pretty much know the answer is just sitting there, so close by that I could walk over if I were so inclined. But no, I'll just twiddle my thumbs and pretend some lab tech halfway across the country is still fiddling with a few dozen knobs or whatever it is that they do. La la la, move along, nothing to see or do here.

At least the pathology reports will be there in time.

* It should be noted that everyone was generally polite; it's just that, relatively speaking, this woman was the least friendly. She also hung up on me mid-question.

**For the record, I find this infantilization really infuriating. I was at least as emotionally invested in pregnancy test results - hell, in nearly every type of test results - when we were undergoing fertility treatments, and that clinic had no problem delivering that news over the phone, via voicemail if requested. I'm thirty fucking years old, I think I can find out a little information about my genetic makeup without jumping off the nearest bridge.

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At 11:14 AM, January 14, 2010, Blogger persephone said...

Well, I think I'm glad you pushed it off another week, but... ARGH.

My bet is that they only do results appointments on Fridays for the doctor's convenience, rather than your psychological wellbeing. I've encountered this with lots of doctors - they only do surgery one day a week, etc. Maybe they're at more than one office throughout the week. Or maybe they don't mix different kinds of appointments well. Or maybe they want to get out early for the weekend.

But you're right, the infantilization is there anyway. Just the assumption that you MUST have counseling simultaneous with your results - for most people, I think they're right that it's best; but I can see wanting to be able to decide for myself.

At 2:32 PM, January 14, 2010, Blogger Robber Barren said...

The more I think about it, the more annoyed I am at the results + counseling appointment requirement. It would actually save me a lot of time and mental energy if I could get my results, give myself a few hours/days to freak out and calm down, and then go to a separate appointment for counseling and advice armed with specific, well-thought-out questions. Instead I have to prepare myself for four possible scenarios (mutation/no mutation, with/without my mother's path reports indicating a mutation), come up with all the possible questions for each of those scenarios, and process the results quickly enough to know what to ask without letting emotions get the best of me.

This is why I peed on a stick the day I had my first beta blood draw. If I didn't have that second line, I never would have thought to ask for the hcg number.

At 4:23 PM, January 14, 2010, Blogger Lut C. said...

For a minute there I thought you were talking about January 2011.

At 10:50 PM, January 16, 2010, Anonymous Teri S. said...

Hi there - just found your blog after you commented on mine. I started from the bottom and read up..thought I'd get to the top to find out if you were BRCA mutated like me, but I guess I have to wait along with you to find out. From start to finish it took 55 days for me to get my test results. Terrible..just waiting. And my doctor's office did tell me the results over the phone..and I didn't jump off a bridge, but I did sort of feel like I got pushed off of one. That was almost a year ago.. feeling much more empowered and confident about things now!


At 12:25 AM, August 22, 2010, Anonymous william said...

This is why I peed on a stick the day I had my first beta blood draw


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