then she appeared

Two times in the past eight weeks I've tried to advocate for myself, medically, and I was met with nothing but skepticism and arrogance.

The first time was my aforementioned cough-that-broke-my-titanium-wire episode six days after surgery. I knew I'd broken something. Knew it. Went to the local ER, asked for an X-ray. Doctor talked me into taking a CAT scan, gave me fluids while I was waiting. Had to wait a long time for someone to read it after. Attending doc came in, told me I'd be released soon, he was sure. There's nothing wrong. It's ok. Then suddenly, no, you're going via ambulance to your surgical hospital's ER because we don't understand what your CAT scan is telling us. Let me hang more fluids. NO, I insisted, the fluids are making me feel worse. Ok, they listened (turns out that was a good thing).

At the ER I stayed in a hallway for 2.5 hours, doped on dilaudid. I make it into a room, at last, and the parade of doctors and surgeons begin. I think I saw seven, plus two nurses and several interns. They initially couldn't load my CAT scan (brought with me on disk) into their system, so everything was delayed. Turns out they could LOOK at it, though, and couldn't see any problem on the scan. They all patronizingly told me that what I was feeling was normal surgical healing pain, and I should go home and take it easy. Seven hours later I did just that, but the entire time I felt that they were wrong.

Five days later, after feeling like crap for those days and having what my visiting nurse and visiting physical therapists both referred to as a "setback", my surgeon's office did a simple x-ray as part of my follow-up exam and told me that yes, the top surgical staple had indeed broken. It would eventually scar over and heal up and I shouldn't worry, though. Even though I could feel flexing with every breath and coughing was making it hurt a lot and I was doing a lot of coughing. Not sure if they could have done anything when I first complained, but I would have felt better knowing I wasn't being hysterical, anyway.

They ended up having to remove a liter of fluid from my lung, and then again doing the same in a week. For some reason I am not getting rid of fluids as quickly as I should be. Still, I could have probably had that done on Saturday instead of Thursday if they had listened to me--I could have had treatment days earlier.

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The second time was this week. I went to my primary care doc because I can't walk any distance without gasping for breath. It sucks, and I figure that 7 weeks into my recovery I should not have this much trouble. My lung doesn't feel any better than it did while I was in the hospital or after they did the thoracentesis (lung tap). I call them in advance to ask if I shouldn't get a chest x-ray first, so they could tell if I've got more pleural effusion, in case I need another tap. I could get the x-ray on my way in as radiology is right in their building. His PA tells me no, he will want to see me first. I insist that she ask him, explain my issues patiently, and point out that I still can't drive so it would be best if I did it all the same day since I have to get a ride. She calls back after talking to him. No, he wants to see me first. SIGH.

So I go in. I tell him everything, he looks at my prior tests. He listens to my chest, says it doesn't sound bad. Starts writing me refills on all my prescriptions. Doesn't think I need the x-ray I want. I insist. So he has me get it done on the way out, along with getting my blood work done. I go home, dejected. I feel like I'm never going to get better, and I feel like my doctor is just not in the caring business anymore. He didn't EXACTLY treat me like I was a hypochondriac, but he really didn't seem to be addressing my concerns.

Yesterday at 7:30pm, so four days later, he calls me at home. Tells me that the fluid around my lung hasn't increased (note that it hasn't decreased, either), but that instead I had some INSIDE my lung (so, pulmonary edema). Swell. The treatment is to take a diuretic, which he has already called in. I should start taking it in the morning. (NOTE: If he had done as I suggested, and had the x-ray done before I came in, I could have started on the diuretic four days ago. But ok. At least I have a diagnosis and a treatment.)

But why does it have to be so damned hard? I live in ostensibly the best area in the country for medical care. My doctors are based out of one of the best hospitals in the country. I am not a shrinking violet about confronting people. And it's taking all I have to get treated. I can't even IMAGINE what happens to people who aren't pushy.

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So this is really a PSA for advocating for yourself. Keep pushing. Apparently both pleural effusions and pulmonary edemas can cause permanent damage, up to and including death. Important to get what ails you treated!

Here's hoping the diuretic will handle my fluids. Because breathing is a good idea!

Tomorrow it will be three full weeks since surgery. I was intending to keep a more detailed journal of my recovery, but mostly I've been sad, lonely, in pain, feeling pathetic, and feeling like this burden would never ease, and who needs to read about that shit? Not even me. I've had excellent help from Patrick, from my mother, and from many people who've sent me cards, plants, flowers, and who have texted and called me to cheer me up. That part has been great.

I did write down a few things as I went, so here they are.

July 27, 2014

I'm feeling angry AND I'm feeling perspective at the same time.

I'm angry because I just don't feel that I was adequately prepared for the helplessness I'm feeling about my recovery. I alternate between everything being ok, reasonable, fine, and then weeping at how hard everything is and why can't I play tennis and swim right now because it's summer! Mostly I am weepy because sleeping is hard. I love sleeping, and getting into and out of bed is just sucktastic. "Sternal Precautions" are hard to remember, sometimes, especially not lifting your arms over your head. I am pretty nervous all the time that I am going to permanently damage myself. I felt a pop last night when I coughed, and I am certain that I did something bad (it really really hurt and scared me badly) but the seven different doctors at two different hospitals couldn't find anything, so I guess I am wrong. Still, each time I cough now I feel a shifting/popping/sliding. So I am angry.

But perspective: I can recover at home. I have a job that I don't need to be at for long periods of time and I still get paid. I have insurance that will cover this (once my out of pocket is met). Beyond normal surgical dangers, I wasn't in danger of dying at any particular point.

Keep the perspective in the forefront. That's really what I need to do. Hard, tho.

August 3, 2014

I probably should stop watching all the normal tv I like to watch—dark crime dramas. It's left me feeling bleak. First I watched the last six episodes of The Killing, which Netflix produced after the series was cancelled at AMC. Then I watched Top of the Lake, which is set in New Zealand and written, produced, and directed by Jane Campion, so while everything is quirky, it's also horrifically bleak. I need something more cheerful. I might switch to movies I've already watched. I can't watch comedies because laughing? It hurts!

August 10, 2014

At my first follow-up visit with one of my surgeons, they determined that I should have fluid drained from my lungs. To do that, they do an ultrasound first to determine the largest collection of fluid and they mark you up. Then they make you lean over a table, stick a needle into your back and stick a tube in and suck out the fluid (in my case, a liter). Surprisingly that part isn't bad. It's the end, when they get close to being done, and you just start coughing and coughing and it feels like you can't breathe and it hurts. Eventually, you stop coughing, mostly, and you feel slightly better.

I had more energy for a couple of days afterward and could get around without breathing hard. When I went back for my second follow-up visit with the same surgeon a week later (this last week), they did it again. This one was for what fluid was left (another liter), and was somewhat more unpleasant, as I started coughing about three minutes in (did I mention the procedure takes a long time? It does) and couldn't stop. Man. Draining in so many ways! The whole next day I was wheezy and congested, too. I had to sleep upright in my chair, because I just couldn't lie down. Bleah.

So the tap was Thursday. Friday I was just wrecked all day, and I had a visiting nurse, and we got a new fridge delivered so there was uproar (furniture had to be moved, doors had to be removed, the old fridge contents needed to be put in a cooler, the new fridge had to be loaded, uproar). I was in pain and wheezy and tired and just a mess. That night I managed to sleep in the bed, however, and woke up and felt better. I managed to go out to the store with mother, did a few errands. It's remarkable how feeling useful really helps. I think the worst part of all of this is that I have no ability to do anything and I can see all the things I usually do and it's infuriating that I can't do them. But I really don't want to mess anything up further. I haven't mentioned here already, but the pop in my chest I felt back the first Saturday after surgery was indeed me breaking a titanium staple. They didn't see it in the CAT scan, but it was obvious in the X-ray they took a week later. They say I'll heal up around it and it should be fine. I am dubious, but trying to be optimistic because I don't know if I could stand going through this again. (I don't even know what they'd do to repair it if it doesn't heal right, because I am afraid to ask.)

I only have about a week of pain meds left, if I took them every four hours like the bottle says. (Yes, I know I can ask for a refill. I did that last week. This IS the refill. I just am sick of being doped) I did an experiment today, and instead of taking a pill at 5:30pm I waited until 11:00pm and just took Tylenol. Uncomfortable, but not excruciating. Maybe I can get off the oxycodone soon. I'll save it for bed, perhaps. It makes me nod off if I'm sitting in my comfy chair, so I'd rather just cut it loose.

So anyway, my status is quo, I guess. I am finally feeling better. Tomorrow I see my primary surgeon, where I anticipate that he'll tell me that there were some micro-carcinomas in my goiter like there were in the part he removed six years ago, and that everything was contained, and that there is no further treatment that I'll require. He'll tell me everything looks good in the X-rays and that I should be fine in a while. I wish I knew what a while is, but everyone is different. Other surgeon said 8 more weeks (I think total recovery is 10-12 weeks) but that I could go back to my desk job any time I felt ready. Yay?

Patrick's BF Peter is driving me tomorrow. Are they the bestest, or what?

Had my pre-op exam on Monday. It was pretty easy, they took some blood, the Nurse Practitioner did an exam and took my history, and that was about it. Later that day I got a call from a diabetes nurse, however. Apparently my blood sugar was pretty bad, really spiked since February. I've been pretty lucky so far as a diabetic. My levels have been pretty easy to control with just an oral med and reasonable eating. Lately I've been eating really badly, however, and combine it with the stress of being really sick two times and not being good about taking said oral meds, I guess now I'm in trouble. Because if I can't get the damned levels down, they won't operate. So my diabetes nurse prescribed insulin for me. Yikes! She called the Rx in for me and asked me to meet with her on Thursday, after I meet with surgeon number two, so she could go over the plan with me.

So that makes me pretty nervous. Not the taking insulin. I'm fine with needles, and it's just a maintenance dose that's supposed to get my numbers in line quickly. It's just that somehow I've gotten pretty sick all at once:

1. Sick enough to require antibiotics 2x since end of March
   
2. Severe back pain (possibly due to #1, from coughing so much)
   
3. A 5.6cm mass in my chest that will require major surgery to remove
   
4. Blood sugar out of control
   
5. A probable hernia in my stomach (see #1 again)
   
6. A weird painful bump on my finger

I sort of whined about it all to my PT while she was massaging my "soft tissue", who remarked that all systems are connected, and often this kind of thing cascades. Yeah, I get that. But I'd like it to stop now, kthxbai.

Yesterday Dr. Gawande called me to ask if I had managed to get an appt with the thoracic guy, because he needed to talk to me about how they were going to get at the goiter. Another revision. He told me that they'd explain it when I was in there. Then he told me he was being followed around by a PBS film crew on the day of my surgery, and would I want to be part? I didn't have to be. I told him I'd think about it. Maybe!

Today I saw surgeon #2 (amusingly named Dr. Wee, which makes me giggle every time I think of that Geico ad where the car salesman says "Why don't WEEEEEEEEEE go out to the car?"). He told me that because of the location of my "lesion" that they'd have to either do a full sternotomy, or do a hemiclamshell incision. And that in my case, because there are arteries and important stuff in the way (the goiter is behind) they should really do the hemiclamshell so that Gawande has more room to work.


I was a bit shocked, to be honest. I went from what I was imagining was about a 4-6" incision to at least 12". And they open me wide during the surgery. Scary. I'll need to stay in the hospital longer, recovery is longer, and there's a lot more "discomfort" as he put it. YAY.

I left there a bit shell-shocked. Met with the diabetes nurse who showed me how to stick needles in myself. She kept asking if I had questions, gave me her cell number so I could call this weekend if I was freaking out or anything, and I kind of laughed and said that insulin was not what I'd be freaking out about, but thanks!

I talked to my boss after I left the hospital to warn her about the extra time away from work, and she pointed out that at least I wasn't coming into this thing from the ER. She had had the ER leading to surgery experience and didn't recommend it. Which made me feel immensely better and snapped me out of my shock, really. I have two good surgeons, I'll be at an excellent hospital, and except for the blood sugar I'm really in pretty decent health to get through this without issue. So yeah. Shock, but recovery.

I'm sad about the giant scar, though. I already have the normal thyroid scar. Now I'll have one that puts that to shame. I am not meant to wear plunging necklines, I guess.

Goiter 2: The Thyroid Strikes Back?
Goiter 2: Electric Boogaloo?

Short story version: went to Urgent Care to make sure that my six-week-long cough wasn't pneumonia. It wasn't! Instead, there was a mass.



Probably another goiter (of course they won't know for absolute sure until they yank it out and test it for cancer). It's in sorta the same place as my goiter the first. It's smaller than that one was (5.5cm x 5cm vs. 12cm x 6.5cm), so it's not actually displacing my esophagus this time (yet). It's weird that it's in the same place as the first one since they took that side of my thyroid out and flushed it. Apparently I had a void that needed filling!

I won't know much more until I meet with my fab surgeon again. Saw my doc today and he basically confirmed everything that the hospital said, and called my surgeon to discuss. Apparently he just sits around taking calls, because my doc talked to him while I waited for a couple minutes. When half the thyroid is left, goiters can recur in about 20% of patients. I always was an overachiever when it comes to really dumb things.

Previous entries about the first goiter.

It's now six days since surgery, and I'm feeling pretty much back to normal. Sleeping normally, no pain meds, eating normally, no sore throat, not even achy! I've still got some pretty exciting bruises, and of course the incision is still there, but seriously, no pain! Medical science is totally amazing.

So that's what I'm thankful for today. Along with all the usual stuff: warm home, food to eat, many good friends, my kitty, a pending president that probably won't suck, the internet to keep me entertained, and lots of stuff to read.

What are you thankful for today?

My incision looks like someone tried to cut my head off and failed. Wanna see?

( my cut behind a cut! )

Surgery is tomorrow afternoon. They pushed the time back to 3:30pm. It was scheduled for 11:30am, which I thought was awesome -- I could get up at my normal time and wander over there and before I knew what was going on it would be over. Now I'm going to have time to fret.

I guess there's little chance they'll cut me at 3:30 and send me home the same night. My doctor told me I'd probably stay overnight anyway, despite it being scheduled as day surgery.

Ah well, I am certainly going to have time to sleep late!

I've been really scattered lately. Don't know if it's stress at work, general overload, or the smack on the head, but it's been hard for me to keep two thoughts together at the same time.

I was chatting with my friend Jenn on AIM yesterday and she asked if I had googled my surgeon yet, and I realized that yet another thing on my mental to-do list had wandered away. So last night I did a little googling and found out that my surgeon is kind of famous! I mean, he's got a Wikipedia page. He won the MacArthur genius grant and was a Rhodes scholar. He worked for Al Gore and Bill Clinton so he's a good democrat. He wrote for Slate and the New Yorker. He's got a couple of books published. He's cute. He teaches at Harvard.

Here's a rather lengthy (but very interesting) Google author talk for one of his books. And here's a NY Times slideshow of him in action.

Interesting!

So today was the initial consultation with both surgeons. ( lengthy description of hospital information and botheration ) Currently I am tentatively scheduled for preop meeting 11/3, biopsy 11/13, surgery 11/13 (obviously something in there will change). The scheduler chick at General's office told me that she's hoping she can push the biopsy earlier and that she'll call me with updates. If there's no way, the surgery will probably be moved to the 20th.

The end!

For the first time in a month I finally have a little energy! It's been so long since I had the energy to do anything at all. This last week has been tough because I was taking Cipro for my pneumonia and the side effects were very draining — they included extreme dizziness, mild anxiety, and very bad leg cramps. I hate Cipro now. Hate.

Anyway, I finished with it on Sunday, so I woke up today feeling pretty good. Managed to get the kitchen cleaned up, my room cleaned up, grocery shopping done, recycleables brought to the city yard, and now I am hammering out loads of laundry. Feels good to be mildly productive. It's been so long since I could do more than the bare minimum.

I just went through my Kindle and realized that I've read a bunch of books that I haven't reviewed yet at greenstreetbks, so that might be next on my agenda. Then I need to clean the bathroom top to bottom. Then I need to update some lists and figure out what's next. So many things to do! I want to get the house under control before my surgery next month (whenever they schedule it for). And I just got added to a team at work that's going to require a lot of attention for the next few months, so it's busy everywhere.

I am kinda sad because I only have 11 days left of time off for the year. I hate using it up being sick. If one week is devoted to post-surgery recuperation, that just leaves me one week for fun! Feh. I know, I know, most people get 2 weeks total per year. I should be grateful. But I really really wanted to go a few places this summer. And now I probably can't. Sigh!

But anyway, it feels good to be alive again!