bad cop, other cop

It’s been a while since I posted.  busy busy busy at work.  But I’m through the worst of it and in fact don’t need to go in to work today at the crack of dawn hours I’ve been keeping since late September.  And finally, work has approved hiring me an assistant.  A very part time, “casual” assistant but one nonetheless.  She’s smart and agreeable and I’m happy to have her even for just a little bit every week.

The medical stuff.  When we last left off, I had asked for a serum calcitonin level since I have thyroid nodules, diarrhea, and flushing/overheating.  The calcitonin was 2, so not out of range.  The ENT doc recommends a follow up ultrasound in January.  I’m ok with that.  My neck isn’t.  Two nights ago, it started the stabbing pain that I now know (from the biopsy) is right around the area of that little, microcalcification containing, hard to biopsy nodule that is apparently practically on top of my carotid.  Nothing for that pain, other than to smush the pillow into my neck until I can barely breath and wait for it to abate.  Coughing, sneezing, straining all makes it hurt more.  Currently, it is quiet.  Please stay that way.

I had a GI appointment some time back now in which my primary asked them to consider carcinoid.  Apparently that’s another pooping/flushing thing.  GI said that she thought I should see endocrine and set it up.  And off I went to endocrine, again, last week.  I took my husband into the exam room with me.  And, as he put it, we played “bad cop, other cop”.  It was necessary.  They were all ready to focus on the hypoglycemia again and I had to redirect them.  Carcinoid.  Can we look into that?  That’s why I’m here.  “But your chromogranin A was only mildly elevated.  You’re on Protonix.  PPIs can do that,” I was told.  Ok, so would the PPIs account for the diarrhea and flushing?  No?  Right.  As I said, can we look into the carcinoid thing?

I got a bit surly with them, them being the fellow and the attending at the current B.A.T.H.  How long have I had these symptoms?  Diarrhea since 2004, flushing since 2009.  “So that’s a long time…” the attending says.  And if you look up carcinoid tumors, one of the things you will find is that most patients who have them have a long time between initial symptoms and diagnosis.  We’re talking years and years here, not months and months.  So can we look into the carcinoid thing?

And so we are.  More 24 hour urine, fasting blood tests.  Then following up with endocrine, who will likely dismiss any levels that are not outrageously out of range.  But I have my primary who had said on two occasions now “I’ll send you for a scan if I have to,” because he’s convinced that there’s some kind of nasty secreting thing hiding out here somewhere.  It was disappointing that the very evident thyroid nodules were not the thing (disappointing because it would be nice to have an identifiable culprit that explained two of my most troubling daily symptoms) but I trust him enough to not feel like I’m going to be abandoned if this most recent round of find the needle in the diagnostic hay stack turns up bust.

For people who don’t get why it is so important to have a (somewhat) unifying diagnosis, consider disability accommodations.  I’m currently filling out paperwork at my job for this.  And in it, I am asked to list my “conditions” with some explanations of them and then, based on those and my job tasks/description, request accommodations that will allow me to do my job (or do it better than phoning it in).  The list of conditions is lengthy and is more a description of symptoms or symptom sets, e.g. “chronic fatigue”, “orthostatic intolerance”.

My job in filling this shit out would be much simpler if I could just put “X” instead of “A, B, C, D…” under “conditions”.   It would also make answering the “so what’s wrong with you?” question so much easier.  I’ve come to truly hate this question, not just because there is no single answer and this plagues and dismays me on a personal and functional level, but because people expect a single answer and when they don’t get one, it highlights the ease and magnitude of social invalidation of the cumulative impact of my various “conditions”.  I’m thinking of just making shit up because I find that the people who ask are pretty ignorant about medical stuff.  I.e. they have no idea that “orthostatic intolerance” is a symptom and not really a diagnosis.  I already do this with my joint pain.  I tell people who ask (when I can’t take stairs two at a time in bounding leaps) that “I have arthritis”.  Technically, I do not.  I have arthralgia, which, again, is a symptom and not a diagnosis.  But you know what?   They don’t know and they don’t care, not to the level of needing to hear the difference.  But I can’t do this on a disability form.  So off I go to catalog the fiddly little details of misery in a way that, I hope, will make sense and be legitimate to HR.

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weighty

I’m down to 132, from 136 the first week of August.  Total since June is a weight loss of about 13 lbs.  And I’m eating, oh believe me, I’m eating.  Even when I’m nauseous – although somewhat less then.  Tonight I had a bowl of sweet potatoes and carrots, about a 1/4 bag of ruffles, M&Ms, and a half a steak sub.  This is not unusual in terms of amount of food for me – although I don’t usually have candy and my protein usually comes from a slightly better source than take out steak bomb.

“It really sounds like you need to see an endocrinologist” Dr. Lasthope at B.A.T.H. said to me early on in the appointment today.

Yes, I agree.  However, my PCP drew a crap-ton of thyroid labs and when I called about a week later, the RN told me that “everything that’s back looks normal”.  This does raise the question of what was back, but I’m fairly certain that what was back in a week included TSH and probably the T3 and T4 levels, although I’m not certain of the last two.  I guess I should follow up, again I mean, on that.

“I did see an endocrinologist here, they focused on my hypoglycemia and told me to keep a food journal and see a nutritionist.  My PCP was not pleased, he said that wasn’t what he sent me for,” I told her.  “Well, I’ll make a note of what it is they should be focusing on,” she said, in fact writing a little note.

She was nice.  I thanked her for being nice.  She thanked me for “knowing what you’re here for.”  And also very much liked that I had pictures of mouth sores with me on my ipad.  Yeah, I wasn’t going to bust that out but she asked about mouth sores and I was in the middle of describing it when I realized I had some lovely shots of them with me.  “How did you get those pictures?” she asked.  “Um, I’ve got a big mouth.  And a little camera.”

More pooping in cups, endoscopy and colonoscopy on the horizon (I’ve had stomach polyps and that plus the week of nausea was enough to make it less of a difficult sell for me).  Following up, etc.  It’s never easy.

The blob

Because they felt bad at the MRI place for not processing my request for a copy of my brain MRI from last year, they were nice enough to offer to put my neck images on too. And so I left Wednesday with unread images from that days MRI.

Yes, I looked. And yes, I know that’s not a great idea, because I have no illusions of being able to read films. In fact, I’ve looked at some stuff on the Internet and if it weren’t for those helpful little arrows and whatnot, I’d have no idea what I was looking at. I mean, sometimes it’s obvious…sometimes you see a blob, something that stands out from an otherwise homogenous or uniform background.

Like on mine.

Um…what’s that blob? I’m fairly certain it’s on my thyroid gland, right side, upper. I can see it in all aspects images (coronal, axial, and sagittal). Not big. 14 mm was the largest measurement in the sagittal plane. So, uh. What the hell?

say Aaaaa…owwww!

Saw my doc today.  And yes, that was an awkward conversation.  But he handled it very well.  Only made one joke, and

photo of mouth with two large overlapping weals with defined edges on hard palate, multiple smaller raised bright red patches on soft palate

yes, this hurts

that was after I made one.  “Well that sucks,” he said.  And added “Literally”.  Then he took pictures of the top of my mouth.  His came out crappy so I promised him I’d send him the lovely ones I took.  My experience with Lyme Disease has left the following lesson indelibly seared into my mind:  Got a rash?  TAKE A PICTURE.

So regarding everything else that plagues me and over which I have no control, labs were normal this time so yay, I probably don’t have a wee tiny tumor hiding out somewhere making me feel like crap.  Still feel like crap though.  He sent me off with a referral for a better GI doctor (thank god), a promise to call the endocrinologists at the B.A.T.H. where I went last summer (who had dismissed me with advice to keep a food journal and see a nutritionist for the hypoglycemia, ignoring everything else).  He wrote in my note:  “I’m sorry that the endocrinologist at ______ did not answer the question that you were sent there for.  I will talk to them personally to see if we can get them to look at the issues.”    And I have some vitamin recommendations, trying oral (vitamins) again since I can’t miss work for IV right now.  We’ll recheck the levels later.  Got to see my hands and ears do their flushing thing.  He checked the temp…”wow, your left ear’s two degrees hotter than your right”.  Yes, it felt that way.  But my temp is a lovely 98.6.

Before wrapping up, he asked if there was anything he can do for me, and not in a customer service call, insincere way.  He sounded like he meant it.  But I douldn’t think of anything off the top of my head, other than “magically make me feel better”.

Ah, well, I do like my doc.

Sweating it out, part two

When I mentioned the night sweat thing at my appointment yesterday, the surgeon mentioned possible changes in the blood supply to ovaries after hysterectomy.  So like a mini-menopause? I asked – a minipause!  Although he is adorable, and although I’ve seen things approaching emotions on his face, I have to say that I’ve met few people who do stone-faced as well as my Nordic GYN surgeon.  Apparently “mini-pause” warrants stone faced.  And “it should pass.”  I knew if I pressed for scale of “passing”, I’d get evasion.  I don’t know, maybe it was something about him or just experiences with doctors in general.  Anyhow, I went home and looked it up after yet another sweaty (but not in the fun way) night.  An unscheduled hormone hop would also explain the HUGE migraine.  Hell, my body doesn’t even like the regularly scheduled ones, so you can imagine how it would feel about “minipause” ones.

http://www.ncbi.nlm.nih.gov/pubmed/15629673

    Ovarian changes after abdominal hysterectomy for benign conditions.
    Chan CC, Ng EH, Ho PC.
    Department of Obstetrics and Gynaecology, The University of Hong Kong, Queen Mary Hospital, Hong Kong, People’s Republic of China.AbstractOBJECTIVES: To investigate any change in the ovaries, including early follicular serum follicle-stimulating hormone (FSH) level, total ovarian volume, total antral follicle count, and ovarian stromal blood flow, in patients who had undergone abdominal hysterectomy for benign conditions. 

    METHODS: Fifteen women with abdominal hysterectomy and conservation of ovaries for benign conditions and who were between 29 and 44 years old were recruited to undergo three-dimensional ultrasound examination with power Doppler to assess total ovarian volume, total antral follicle count, and vascularization index (VI), flow index (FI), and vascularization flow index (VFI) of ovarian stromal blood flow. Serum FSH, estradiol, and progesterone levels were checked on the same day. The results of the assessments were considered taken during the early follicular phase if the estradiol and progesterone levels were basal. Fifteen age-matched healthy women underwent the same assessments on the second day of menstruation.

    RESULTS: Women with hysterectomy had significantly elevated serum FSH level and lower ovarian stromal blood flow indices, including VI, FI, and VFI, as compared with healthy women. The total antral follicle count and the total ovarian volume were similar between the two groups.

    CONCLUSION: These changes may suggest altered ovarian function after hysterectomy.

     

compartmentalizing

My body is a system, a big complex system.  What makes it complex?  Not the spark of spirit, not intelligence, not even my quirky and sometimes evil sense of humor – all that is what I’d term “metaphysical complexity” and it is in fact not proper complexity.  It is an analogy, parasitic on the proper definition of complexity for meaning.  Even the stupidest piece of living meat is complex, in the proper sense.  It has dimensions, embedded levels – it’s parts are related to one another in multiple, sometimes apparently redundant ways.  The resulting meat is more than the sum of its meaty parts.

So this piece of meat would like to know why it is that despite the meat presenting wrapped in a package that includes unmistakable signs of complexity, both proper and metaphysical, the meat is considered as a simple collection of unitary parts each of which is allowed a limited set of restrictively defined relations to the others.  Yes, I would like to know this.

This is the thought I am having this AM prompted by two things.  One is that I was replying to a friend who asked about surgery.  Is there an increased risk of cancer with endo?  So far as I had been told, no.  Turns out I was told wrong.  Oh, hey don’t blame the doctors too much. The last time I was told anything about that was years ago when I was first diagnosed.  Did the guy who did my second lap assume I had subscriptions to all the relevant medical journals?  Nah, but he might have disagreed with the studies.  Or maybe it was just the subtle kind of error in judgement that creeps in at the seams of medical communication and discourse.  A massive failing of common ground.

The other thing is that I will be doing histories again today.  The import of this is as follows:  when confronted with a history form, my gut reaction is to list everything because I assume it might be relevant.  Because I know I didn’t go to med school (and don’t subscribe to the relevant journals) and therefore who am I to cherry pick on what my doctor “needs to know” in terms of my health?  If I want a comprehensive analysis, I should give as much valid data as possible.  And so I try.  And yet I’ve had the “huh?” reaction before.  Most relevant here, I’ve had endocrinologists seem disinterested in my endo and I’ve had gynecologists who are disinterested in things like the chronic diarrhea and cyclic hip pain.  And I can’t get started on orthopedic surgeons.  There isn’t enough time for me to work through my irritation with that bunch.

So it is with this lovely attitude that the meat prepares for the several hours preop appointment this AM at the Big Ass Teaching Hospital today.

avoidance

“Avoid coffee…” sounds innocuous enough, right?  I was to avoid cigarettes too, which I’ve done successfully at least for a few days in the past without feeling like a strung out junkie.  But apparently, caffeine has become one of my

illustration of woman with cup of coffee. text says "symptoms of caffeine withdrawal may include: headaches, drowsiness, impaired concentration, homicidal rage"

Avoiding coffee didn't go so well for me

neurotransmitters and without it, I’m a mess.

Let me back up a bit here.  I was supposed to do another “pee in this” test because a random urine came back with “elevated” levels of “adrenaline by products”.  To make sure I don’t have some endocrine-tumor thing that’s causing all the trouble, my doctor ordered a nice, well controlled test to look for evidence of it in my urine.  For this controlled test, patients are advised to “avoid caffeine and nicotine” for three days prior to testing (and during the 24 hour collection period).  I thought “ok, that’ll suck but I’ve managed not to smoke for less reason for longer periods of time.  I can do this.”  What I have not done any time in the last 20 years is NOT drink coffee.  Sure, in a pre-procedural NPO or caffeine restriction sense, I’ve not had coffee.  That day.  Or that morning to be precise.  But as soon as possible, I’ve found my way to a dunkin donuts and filled up on what it seems has become a very necessary chemical.

Last week, I tried a caffeine and nicotine reduction in preparation for a Sunday urine collection.  And then it got warm out.  And the migraine came.  And I got my period.  “Fuck this…I’ll try it next week.”   But in the meantime, that is, all this week, I’ve stayed on a reduced caffeine and cigarette regimen.  One small cup of coffee in the AM and a large hot chocolate with about 3 ounces of coffee in it.  This is a reduction from my usual daily two small cups at home in the AM and one medium coffee at dunkin donuts which I nurse until about 11:00 or so at work.  I didn’t think this was a lot of coffee.  In my 20s, that was about 1/8th of my overall coffee intake.  It was the 90s, the age of the coffee house.  I was young and in a swinging college town full of bohemian types and a colorful 24 hour diner within walking distance of my house.  I’d finish off a pot mostly by myself in the morning, go to class, have a double mocha, go to work, have more coffee, go hang out with my friend at the diner and drink god only knows how many of the bottomless cups there until 2 AM.

Oh yeah.  Good times.

As I got older, I discovered caffeine had a stronger effect on me – I’d feel wrung out and shitty if I drank it in the afternoon.  So I instituted a more or less rigid “no coffee after 2:00 PM” policy, and no more than one dunkies run (medium iced or hot) in a day if I’d had coffee at home in the AM.

So the extremity of my reaction took me somewhat by surprise.  With me just coming out of the summer of migraines, I’m more than a little uncomfortable with the notion of inducing those sensations in myself intentionally.  It brings back much too recent memories of grit teeth, white knuckle rides in to work and days and nights full of throbbing, howling, head pain that made any vibration, motion, light source, or sound into a series of unbearable tortures.  And then there was the nausea.  Oh the nausea.

I do want to be a good patient.  I do want to figure this out.  I do want to know if I have this tumor thingy before I have surgery in January.  But good god…I need to be able to get up and go to work and feeling like this is not conducive to things like oh being at all functional.  What to do.  I think I’m going to tell my doctor I’m struggling with my caffeine addiction and see where we go from there.  I have a feeling the response will be to just suck it up.

(update:  my husband just helped me put fangs on the coffee addict.  Much better.)