3 Weeks Post-Surgery: Mostly Good (Even the Cancer Part)

Three weeks ago, I went to the hospital for surgery. They removed half of my thyroid, because it had developed nodules (what they call thyroid tumors they suspect are benign) and had swollen up enough that it pressed against my trachea, and the nerve that controlled my vocal cords. I was having trouble breathing, at times, and my voice had started to go froggy. Of course, there was the year, going on two, before that of me starting to go downhill physically  – tired all of the time, gaining weight, struggling to stay on task or complete things on time – but after dealing with a doctor who insisted it was just me being a woman, getting older, I’d found one who was actually willing to do lab work and sort it out. I was diagnosed with anemia, and started medication for that. Aside from the pressure on my throat, I should have been on the mend.

I didn’t quite feel it, though. A little better… but still, something was wrong.

We agonized over the decision to cut out part of my thyroid. It’s a simple, safe, outpatient procedure, except that it’s still surgery, which is never guaranteed 100% safe. My SO and I talked it over, made plans for dealing with what would come next if I didn’t make it out okay, and decided (supported by my surgeon’s opinion) that it’s better to get the swollen part of my thyroid out now before it got bigger and did some real damage. I felt it, a literal lump in my throat, every time I swallowed. Every time I tried to exercise and had to breathe harder. When I laid down for sleep, and the lump shifted a little, pressing on a new spot I hadn’t yet learned to ignore.

Your thyroid is a butterfly-shaped organ that lies flat, for most people, and has the volume of a peanut on each side. My right side wasn’t visible from the outside, so you wouldn’t know unless you saw a sonogram that it was the size of a jawbreaker, and growing. Inside were two nodules; the bigger one had been biopsied three times since it was found three years ago, and declared benign, though I was told in 2013 that it was collapsing and would get smaller – we discovered in May that it had actually gotten larger.

The smaller one was labeled “suspicious” by the sonogram tech during this round of tests, but was .1 mm too small for a biopsy to be considered necessary, according to the current medical guidelines, so I was told not to worry. We’d wait, they said, and check on it again next year.

If I hadn’t opted to remove the larger side of my thyroid, that nodule would still be there. Continue reading

Next up, surgery…

After a sonogram and two biopsies, we’ve confirmed that I have multiple thyroid nodules that have swollen one side of my thyroid to the size of a jawbreaker. It’s not visible from the outside; if it were a cosmetic issue, I could put it off, but my thyroid has grown inward, so it’s pressing against my vocal cords and throat. It doesn’t keep me from eating yet, but my voice has gotten a little froggy, I get sick more often lately, and when I’ve been sick, it’s taken longer to recover (I had bronchitis last fall for more than 8 weeks, for example.)

The biopsies showed that the largest one is benign (yay!) but growing, and there’s a smaller nodule that’s “suspicious”. Because of all that, I’ve scheduled surgery to remove that part of my thyroid.

This, plus finding out I’m anemic, explains a lot about my health and energy levels the last year or so. I’m taking supplements to correct the anemia now, and with the surgery, I should be in better shape. I hope. I have too much to do, and I’ve been struggling to manage it all. It’s a relief, in some ways, to know why: I’m not lazy, I’m not a failure, I’m not giving up. I have a documented medical reason for why I’m exhausted and uncomfortable and falling behind.

Still, sometimes I have to tell myself that over and over, and it doesn’t help. Excuses, excuses, what are you going to do about it? Next up, surgery, and then getting my life back on track, and moving forward.

I can’t accept anything less.

Medical Update, or, So That’s What Happens When Your Blood Doesn’t Get Oxygen

Tl;dr: I have severe iron-deficiency anemia that went undiagnosed for the last couple of years. I not only don’t have enough iron in my blood, I lack ferritin, the protein that allows your body to store iron. Because my body won’t reserve enough iron from meals, I have to take in new iron every single day, and will for as long as I live, if I want to keep, you know, living.

After losing my health insurance along with being laid off last year, I got new health insurance in 2016 (thanks, Obamacare!) and last week, got into a new doctor’s office. I knew, before I went, that I was going to want to talk about my health and the way I’d felt it was going downhill the last couple of years. I’d done a lot of hard work to get in shape, to eat healthier, and I was getting there. Two years ago I was only 40 pounds away from my goal, and expected to be there by the end of 2014. I was walking an average of 5 miles a day, doing cardio and yoga and lifting a little free weight at home, starting to buy clothes I really liked to wear. Then, it all sort of fell apart. I was exhausted, constantly, sometimes sleeping 10 hours and then still having to take a nap in the afternoon. I started to be short of breath. I stopped walking so much. My skin got dry; my nails became ridged and brittle, and my hair started to tangle easily, even when it was short, to the point that I kept it tied up or under a hat most of the time. The dark circles under my eyes got worse. I was struggling to do everyday things. I got dizzy when I stood up too fast, and sometimes my fingers tingled like they were asleep. My hands and feet were very cold, and I noticed I was turning the heat on more than before.

I’d also talked to my old doctor about the same symptoms and his response was literally, “You’re getting older, so you’re just going to have to get used to that.” That didn’t seem right to me so I insisted, in a followup appointment, that no, really, there’s something wrong. Old doctor then said I was probably pre-menopausal, at 41, with no family history of that. I said it didn’t seem likely, so he ran tests, and found that no, that wasn’t my problem. He told me then to sleep more (I was already sleeping too much). He said I was probably depressed. (No. I’ve seen a therapist when I’ve felt I needed it before, and I wasn’t afraid to do so again. That wasn’t the problem.) He said I needed to eat better and exercise more and, again, to just accept that I was slowing down because I was a woman, and I was getting older.

The last appointment with him was a year ago. Knowing I had a chance to get the new doctor to maybe pay attention to my concerns, the night before my appointment I sat down and wrote out my medical history, and every symptom I had now. I printed out my calorie intake, sleep, and exercise logs from my fitness tracker.

When I went in to the office, two things happened:

  1. New doctor saw right away that I hadn’t been sent in for a followup thyroid ultrasound, even though it was in my file that I needed to get them every year or two after the (benign) nodule we found in 2013.
  2. He looked over my info, heard my frustrations, and promised to run every test we needed until we figured out the problem.

He took my vitals, and told me what he wanted to look for. My resting heart rate was 93 beats per minute, unusually fast, especially for someone who always felt sluggish. My lungs sounded clear, so it was unlikely an obstruction was the cause of me feeling short of breath. He asked if I’d always been so pale. He ordered labs. I fasted overnight and went back in the next morning, where they took 6 vials of my blood, to test for iron, and thyroid function, but also cholesterol, and various vitamin deficiencies. He added the test for ferritin, which I hadn’t heard of before.

And he let me know that my thyroid felt swollen and lumpy, a sure sign that I’d developed another thyroid nodule. We scheduled a sonogram for this week. (I’m hopeful it’s benign, like the last one; some people just develop these non-cancerous thyroid tumors without it affecting much else. My thyroid hormone levels came back okay, which is another good sign that the nodule is just annoying, and not dangerous.) But…

It turns out that I’m anemic in a big way. Like, wow, it’s impressive that I’m as healthy as I am, considering. I have very low hemoglobin, Mean Corpuscular Hemoglobin, Mean Corpuscular HGB Conc and very low serum ferritin scores. In addition to taking iron supplements, I’m also taking daily B12 to help with the absorption of iron. Unrelated, but my vitamin D levels were also so low that I was prescribed a mega dose to be taken once a week for 12 weeks, with a smaller daily dose thereafter. I live in the frozen north, so lots of folks around here have lower D levels than usual, but my doctor said, “If I tested everyone in town, 98% of them would have low D, and you’re at the bottom of that group.”

It’s going to take a while for everything to kick in, and we’re going to monitor it closely over the next few months to make certain my health improves. I’d always thought of anemia as you’re a little pale, go eat a steak and you’ll feel better. (This diagnosis might explain why eating a good cheeseburger really did make me feel great, for a few hours.) In my grandma’s time, people with serious chronic anemia used to develop pernicious anemia and then die, and I’m hoping to avoid that. These days, with medical care, it should be that I simply take a pill for what my body doesn’t have, and then I’ll be fine. I can do that.

But I’ll be damned if I let a doctor tell me I’m just a woman getting old, ever again.

The Quest For Sleep

Since leaving my day job, I’ve had severe insomnia. I assumed it was stress related, and worked on reducing my stress, but also cut down on caffeinated sodas (which has other health benefits as well).

But I’m still not sleeping. I have good days, a couple of good nights of sleep, and then I lose control of it again. I either am “awake” during the day, but too tired to do anything useful, or I sleep poorly during the day and am up late, exhausted and useless. Finally, I talked to my doctor, and we did a bunch of tests.

He thinks there are two main culprits: my ADHD, and a couple of decades of bad habits with caffeine. I have had insomnia my whole life… (Ironically, several months ago I gave up the medication I was taking for my ADHD, because it was too expensive, and kept me up at night.) Most likely, my current bout of insomnia isn’t actually new.

My doctor said that my day job helped mask the serious sleep deprivation by giving me structure. I had to get up at the same time each day, without the option of going back to sleep during the day, so I compensated by consuming several caffeinated drinks each day. And, in the evening I was pretty much useless. But at least I was going to work. Once that was gone, I lost my anchor. And giving up soda cut down on how much caffeine I was drinking, which made me more tired —

Why didn’t that help me settle into a good night’s sleep? Because I push myself too hard. I forced myself to be awake to get things done, and compensated in unhealthy ways: more coffee, and overeating. Both of which interfere with sleeping, too. See, caffeine stays in your body up to 24 hours, and when not keeping you awake, it can still keep you from resting, by making you wake up more often during the night.

The solution is to make a big change, and then give it time to work. (It’s the being patient part I usually have trouble with.) The plan?

1) Get up at the same time every day, even when I’m tired.

2) Go to bed at least 7 hours before the alarm is set to go off. (8 is better.)

3) Start the day with one caffeinated drink. And that’s all. No more! Not at all, not the rest of the day. None.

4) Resist the urge to nap, eat too much, or caffeinate during the day.

5) Whenever possible, if I feel sleepy during the day: exercise.

6) Accept that I am going to be tired for a week, maybe a couple of weeks, until I get settled and my sleep cycle resets.

Now that I’m going back to freelancing, that last one is the hardest. At a day job, if I struggled through sleepily and was a zombie at night, okay, I’m still getting paid. When I work for myself, if I take time off to be a slug, not only do I feel lazy and useless, but I’m not making any money. I can’t afford to take time off.

But I’m going to be 42 this year. I’d like to be just hitting the halfway point of my life, instead of nearing the end — and if I don’t stop the “quick fixes”, who knows how badly that’s affecting my health? I have a chance to turn my life around now that I may not get again any time soon. In that case, it’s an easy choice.

I’m setting my alarm, going to bed early tonight, and getting up on time tomorrow. I’ve got a caramel dessert-like coffee drink waiting in the fridge. I’m giving myself permission to take it easy this weekend, and next week too. Maybe next month, if I have to.

They say you can’t put a price on your health. I’m about to trade my income for my self, and find out.

Boskone Recap: So You’re on 4 Panels and No One Knows You’re Going Deaf

Two weeks ago, I attended my first Boskone, and I had a great time. It was the best mix of fun and friends and panels – four of which I was on as an invited panelist – and there was really only one big “oh hell no” moment of the whole convention (more on that later). But before I can talk about the drive, the food, the hotel, the wonderful people, I have to talk about something I’ve been avoiding:

I’ve lost a lot of my hearing in the last few years and I can’t hide it anymore.

To begin with, I wasn’t purposefully hiding it. A few years ago I’d noticed that I wasn’t hearing as well as I thought I should, and had it checked out. After a hearing screen revealed a significant amount of loss, I had more tests, saw specialists, had an MRI, and was diagnosed with otosclerosis. I looked at the treatment options, which basically consisted of surgery, and decided that I could live with where I was. Rather than have someone stick a scalpel into my ear and wiggle it around, I’d just accept and adapt.

That worked fine for a while. I learned to take seats up front in class, make sure I was facing someone when they spoke to me, and got much better at reading lips. Compared to the disabilities many people have to live with every day, this seemed like an annoyance but not truly disabling. Except that otosclerosis doesn’t get better over time, or even level out. It gets worse, and mine got worse faster than I was hoping.

I’ve lost 70% of the hearing in my right ear and 40% in the left. I’ve lost mainly low tones – which cuts out people speaking, especially men. I’ve lost enough that I can’t play the violin anymore, and after it sitting in my closet for a year, I donated it last week. I can still hear my son speaking (his little kid’s voice is high-pitched still, and he tends toward being loud anyway) and music when loud enough or I’m wearing headphones to cut everything else out, but I get startled easily because my boss has walked up behind me and I didn’t hear it. I have to say, “I’m sorry, what?” or “Are you talking to me?” on a regular basis. I’m starting to speak too loudly or too quietly because I can’t tell the difference; in my head I’m still the same volume as before. It’s difficult for people to tell how much I can hear when they can see that I still notice higher pitch sounds coming from the other room, but don’t always understand what they’re saying to my face. In addition to all of this, I get intermittent ringing in my ears as I lose new tones, and the fuzzy white noise of my own blood moving through my head can be very loud at times, and sometimes I lose all sound/sense of space on my left entirely.

Having people assume you’re not bothering to pay attention is hard enough when it’s coworkers and friends. What about when it’s late at night and you have to ask someone sleepy to repeat what they just whispered, and what you missed was, “I love you”? My persistent (but totally unfounded, I know) worry is that someday they’ll get tired of saying it twice.

Boskone really brought the depth of this problem to the forefront. Being on panels meant I had to position myself at the far right of the table, so the other panelists would be on the side most likely to be audible, sometimes after other panelists had already taken their seats. (Everyone was very nice about moving once I explained.) I didn’t hear the entirety of the conversation up at the panelist table, and I didn’t hear almost any of the audience questions, because there wasn’t a mic for the audience members. I smiled at more than one person, when hanging out in a group of friends, hoping that was a suitable answer to what was probably a comment aimed at me. I participated in the Sunday morning flash challenge, but lost points when the judge on the end couldn’t hear my reading since I’d spoken too quietly without realizing it. A man standing next to me on an escalator said something I couldn’t hear, and when I said, “I’m sorry, what?” his response was “Don’t worry, it wasn’t sexist.”

He’d assumed I’d heard him and just didn’t like what he’d said. That happens a lot.

So. Now what?

I’ve told my work that I have this issue, and we’ll see if that helps there. I’ve started the process to schedule the surgery, which scares me but at the same time I no longer feel that I have a choice. The surgery isn’t guaranteed to fix my hearing, by the way. It doesn’t guarantee anything, but if it’s successful it will most likely only stop (for now) or slow the progress of my loss. I’ve started telling people what’s happening with me, so that at least I’m not offending people who don’t understand that no, really, I’m not ignoring you on purpose. (Those who know and choose to be jackasses are not my problem, but so far, that’s not been many.) I’ll continue to work to make it easier for me to understand others, including moving my work desk this week, making sure I’m facing people when they speak to me, and being honest about what I can hear and what I can’t.

What can you do?

If we’re at a convention and you’re on a panel with me, sit on my left. If you’re moderating the panel, please repeat an audience question before any of the panelists answer it (not just for me, but for the rest of the audience, too). If I’m speaking too loudly or too quietly compared to the rest of the people in the conversation, assume I don’t realize it and let me know. Move to where I can see your face if you’re speaking to me, or do something to make sure I know you’re speaking to me (instead of someone else in the group) before you address me. Saying my name works just fine, and so does tapping me on the shoulder or arm.* Know that listening to one person in a quiet room is vastly easier for me than listening to one person speaking as part of a group of five or twenty people speaking all at once, or in a crowded bar or hotel lobby. This means that you might not have to make any adjustments when we’re hanging out alone but suddenly have to be more conscious of how you speak to me in a restaurant.

Remember that I want to hear you, I don’t mean to be ignoring you, and I don’t mind putting effort into making our conversation easier, if you just let me know that you want to be heard.

I hate the idea that I’m making anyone go out of their way for me, and if it only impacted what I heard/understood, I wouldn’t be publicly saying this at all. Unfortunately, my hearing loss has started to affect what others think of my opinion about them, and I don’t ever want to make a fan or friend feel that I just didn’t bother to listen.

Thank you.

* I know this opens me up to being touched by strangers, which isn’t ideal at all, so please use your best judgement about whether tapping me on the arm is really the only way to get my attention at that moment. If it is, and you’re polite about it, I’ll understand.

Edited to add: Someone mentioned this on FB, and I agree. Please do not say, “Oh it wasn’t important,” when I ask you to repeat yourself. You’re assuming that I didn’t want to listen the first time, and you’re feeling slighted when in fact I just couldn’t hear you and actually want to know what you said. And then you’re making me do even more work to coax it out of you, because I don’t want you to feel slighted, and I do want to be a part of the conversation. Plus, refusing to repeat it means you’re excluding me from being able to continue as a part of the discussion, and deciding for me what is and isn’t important to me. You’re important to me, and I wouldn’t have asked you to repeat it unless I did really want to hear it the first time.

#SFWApro