Health

15 Percent Chance of Cancer

Posted by diana

Which isn’t actually all that high. Although that number is probably not accurate for me.

So. Here’s the latest. The nodule on the left lobe of my thyroid was benign. The nodule on the right side was… we don’t know. The cells they found are present in both benign and malignant nodules. There’s apparently no way to know until they’ve cut that puppy out of me and dissected it in pathology.

My doctor recommends getting it out. Removing the right lobe of my thyroid. She would also be in support of removing the whole thyroid, so that they won’t have to go back in later to remove the left if the right proves cancerous.

If I keep the left, that means I have some thyroid function left. It might even be enough that I wouldn’t need supplementation, or could go with a lower dose. I… rather like the idea of keeping as many of my body parts as I can. I don’t like the idea of needing to completely depend on thyroid supplementation. Not because I mind taking medicine; that’s never been a problem. But because when I imagine surviving the apocalypse and being without recourse to medicine or advanced technology… it seems having some thyroid function left would be a good idea. This is why I’m also very interested in laser eye surgery. Contacts may not be easily come by after Armageddon. And no, I’m not saying I actually *believe* there’s an apocalypse coming. I do, however, worry about these things.

But back to that 15% statistic. That number applies to the population at large. It does not apply to celiac patients in specific. In the general population, we get averaged out by other people. However, celiac patients are apparently 10 times more likely to get thyroid nodules than non-celiac patients. We’re more susceptible to certain cancers (thyroid being one, non-Hodgkins lymphoma being another). I don’t actually know my odds on that one. I’ve done some study and not found much. I’ll probably find more if I dig deeper. But. Current data.

My father was asking me if keeping the lobe was an option. Not because he’s recommending it, because he doesn’t know and was wondering what my options were. So far, the literature I’ve read is saying to get the lobe removed. If I have thyroid cancer, I will not know it from thyroid function. The thyroid can keep chugging along and producing normal amounts of hormone even while home to cancer.

My doctor says it’s not a rush. I do have some time to think about it and do more research. I’m leaning towards removal of the right lobe. If I did get the whole thing taken out and then learned it wasn’t cancerous, I’d be really upset. Reminds me of my grandma cutting mold off a slice of bread, “Why throw that away? It’s a perfectly good slice of bread!”

The doctor’s concern is the risk of anesthesia, plus the risk of nicking either the parathyroid or the vocal chords. I don’t judge any of these risks sufficient reason to remove the whole thyroid. If I need to go in for surgery twice, I’ll do it. Of course… I am the woman who lanced her own peritonsillar abscess (what? it looked funny, so I poked it).

Puppies Make Everything Better

Posted by diana

photo (2)This is Gracie, our latest foster. She’s about 3 months old, fearless, wriggly, happy, and absolutely determined to pounce Ragnar at every opportunity. She hides under the coffee table and waits for him to walk by so she can nip at his feet. At which point he, of course, flops down on his stomach and lets her chew on his ears and try to fit her mouth around his skull. She fails at that one, but they both seem delighted by it.

I… am feeling overwhelmed. Not by the puppy. A few weeks ago my primary care doc noticed something funny when I swallowed a sip of water. So she sent me to get an ultrasound of my neck. Which took a rather long time. The impression I got was that it was longer than it should have been, but I don’t know how long these things normally go. I knew better than to ask the technician what she saw; she wouldn’t be allowed to say, anyway. And the results came back. And I saw them before my doctor’s office called. Because I’m the kind of patient who *always* logs in to PAMF’s MyHealth Online service. And I saw that there were a lot of nodules. Which worried me.

But it wasn’t until the nurse called to tell me I needed to set up an appointment with endocrinology to get the nodules biopsied that I really started worrying. I think it was her tone of voice. She sounded very uncomfortable. Very solemn.

It could just be that she’s used to patients freaking out at all sorts of things. I don’t know. I’m not prone to freak outs when discussing medical things. I think my father would have disowned me if that were the case. Well, not really. But I’m his kid. I’m not afraid of needles, I want to see everything (like my tonsils once they were removed–they were each the size of a golf ball–or my intestine pictures after they did the celiac biopsy), and I don’t freak out at test results. Also…. I have a spreadsheet where I’ve kept all of my test results going back to 1984. Which, let me tell you, sure helps with getting a diagnosis. I’m the gal who, when the ER doc asked me, “I don’t suppose you happen to know what size your ovaries normally are?” said, “Oh, yeah. This is how big they were when I was 19, and this is how big they were when I was 25, and this is how big they were two months ago.” And I showed her my spreadsheet.

So I have a bunch of nodules in my thyroid. Both sides. Both have a large main nodule. One side also has a lot of smaller ones spread throughout. People can get nodules in all sorts of places. Most thyroid nodules are benign. Even most cancerous ones aren’t a huge concern when it comes to the thyroid. When I talked to my dad his mode of reassuring me was to say, “If you have to get cancer, thyroid is the one you want.”

And maybe, at a different time in my life, it wouldn’t stress me so much. But in a year when Jay died of cancer, when my mother is still recovering from the chemo she got for her breast cancer… And I feel guilty for not doing enough for either of them… Some lizard brained part of me feels like that would be appropriate punishment.

I get that I shouldn’t be thinking that way. I get that it’s superstitious and counter-productive and my guilt has little basis in reality. But. Yeah.

I am stressed. A little scared. A lot overwhelmed. I go into shutdown mode when that happens. Kinda numb. Flat affect. I see the endocrinologist next Tuesday. It’s an hour long appointment and they’ll probably do the biopsy right then.

And I keep thinking about that Edna St. Vincent Millay line. “It’s not one damn thing after another, it’s one damn thing over and over.” And I’m very glad I have a puppy around.

Thoughts on Depression

Posted by diana

I tend not to post when I’m depressed. Not because I’m trying to isolate myself–I’m not.

Perhaps it is a symptom of the depression, or perhaps it’s just pragmatism. I figure it’s not interesting unless you’re directly effected by it. My boyfriend? Sure, he wants to know what I’m thinking because it matters to our life together. My mom? Of course. ‘Cause she’s my mom. The handful of friends I talk to on a near daily basis? Yes. My therapist? Well, duh. Aside from that, I don’t normally feel the need to tell people.

There was an interaction that happened over and over again when I was at Fogcon. Some friend I hadn’t seen in a while would start pressing me to come hang out. Meet their kids, meet their new SO, see their new place…  Really pressing. Not in an unkind way. But very emphatic. And I was trying to politely decline, and it just wasn’t working so finally I simply said, “I’ve been depressed lately. I don’t have the bandwidth.”

At which point, the other person would immediately back off. Most were incredibly solicitous and tried to talk with me about my depression and where it was coming from. And I appreciated that, though I didn’t really want to talk about it. And this pattern happened over and over again. Which made me wonder why we think it’s okay to attempt to press people into social interaction. Why is that the default? Why do we suddenly respect a boundary *only* when someone reveals an illness?

I felt like I was doing something wrong in telling people I was depressed. I did it anyway, because I also am in a phase of forcing myself to be blunt, to counteract my usual people-pleasing, conflict-avoiding ways (I’ve been in this phase for two years, and man, it’s hard but worth it). I’m thinking most depressed folks wouldn’t be able to say it. So they’d continue getting socially pressured. And continue feeling trapped. And have no escape. And then be even less willing to go out and interact with groups of people. Thus reinforcing isolation.

I’m lucky. My community is one where people make an effort to understand depression, or social anxiety, or introversion. Also one that doesn’t tend to stigmatize these things. Many communities aren’t. At least people backed off with me once I told them I was depressed. I can’t imagine the nightmare of dealing with people who don’t get it and won’t back off.

 

Obamacare, Hallelujah!

Posted by diana

imagesI am on unemployment. I am on Obamacare. The vast majority of my friends and acquaintances probably feel the same way I do about both of those things: I wish I didn’t need them, but goddamn am I glad they’re there.

This, then, is the profile of someone benefitting from government aid.

  1. College graduate
  2. Masters Degrees (2, and yes, I am proud of that)
  3. Former adjunct professor/lecturer/whatever title means they don’t have to give me benefits
  4. Regularly working contractor in the video game industry, with six years experience
  5. No dependents
  6. White chick
  7. Female in her 30s

I’m not fresh out of college. I’m not new to my field. I’m a middle class white girl with all the privileges and disadvantages that go along with that state (middle class & white = privileges, girl = disadvantages). I’ve worked hard, sometimes for little pay, sometimes for good pay.

When I was teaching, I barely made the equivalent of minimum wage. UCI, USC, and Scripps all paid decently–for the field, but it’s not a field that pays well. The junior colleges… I made less than minimum wage between in-class time, office hours, grading, and lesson planning.

My first year in the game industry, I made twice as much as I made in a decent year of teaching. Six years later, I make twice as much as I made my first year in the game industry. Well, when I’m working. I tend to get contracts that last between 3-9 months. And then I get to go back to job hunting, taking on whatever small projects I can find in the meantime. And I go on unemployment.

You’d think, making 4x the money I made teaching, I’d be doing okay financially. But that’s because you don’t realize I went into debt teaching. It’s not a living wage. I’m not the only one. I remember handing in my resignation and saying, “I’m going into debt doing this.” The response? A sad sigh and, “Yeah, that happens.”

I’m also still paying off my school loans, so that’s $300 a month. As a contractor, I have to pay for my own health insurance. Up until recently, that’s meant I shell out $323 a month in premiums, and another $300-$600 for prescriptions (because the deductible is huge and I’m getting screwed). My half of the rent is $1100 a month. Add in utilities, groceries, car insurance, gas, cell phone, bridge tolls… Most months cost me a minimum of $3000, assuming there are no unexpected expenses and I don’t fill all my prescriptions.

So, I squeak by. Living in Silicon Valley isn’t cheap, but I always have a roommate. I cook for myself, almost never eat out, and have almost no luxury expenditures. Not absolutely none, although buying video games should actually count as part of my job. But then something will happen. My car will break down, I’ll get sick, my mom will get sick, my cat will get sick, unemployment will decide via some arcane procedure not to pay me for two months and then admit it’s their fault and still refuse… sorry, got a little bitter there.

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Just one of those things happens, and I’m in the red again. Two of those things… and I have to borrow money from my little brother (which is awesome, in that he’s doing well and likes me enough that he would lend me money, but sucky in that… he’s my little brother, I should be helping him out, not him helping me).

Admittedly, spending the money to save the cat… for a lot of people, that’s ridiculous. But even without the cat, I’d be in trouble. Because of the cost of healthcare.

In the 13 years I’ve been working, only five of those years did I have employer sponsored health insurance. Most of that time, I carried my own. Or was on COBRA. Or I was on an ex-bf’s insurance (which was all of seven months; most of the time, he was on my COBRA).

I have chronic health conditions. Don’t get me wrong, on average I’m pretty healthy. But I have celiac disease (yes, fully diagnosed with biopsies and all) and hypopnea (which is like sleep apnea’s younger cousin, but not quite as obnoxious). Which means I need reliable medical care. I need to be able to see my doctor more than once a year. I need DME (durable medical equipment) coverage. I need regular vitamin absorption tests and bone density scans. I need to get my intestine biopsied every few years. Oh, and since my mom has had breast cancer, I should also be getting regular mammograms. Oh, and don’t forget the sleep studies! Between the hypopnea and a fatal sleep condition running in the family, this matters.

A sleep study can cost as little as $1k out of pocket (yes, that’s the cheap price) but usually will cost upwards of $2k. Then there’s the DME, which is a few hundred a month (depending on which equipment you’re using). I don’t even know the cost of the bone density scan or vitamin absorption tests, just that my insurance insisted I get the biopsy before they’d be willing to pay for either.

I can’t afford to be without health insurance. For the last year, I was paying the aforementioned $323 a month for a crappy health plan that barely covered anything. I was paying $300-$600 a month for prescriptions. The $300 months were when I skipped filling two prescriptions. Don’t tell my doctor. I was paying my therapist out of pocket because my health insurance refused to cover her. My insurance co-pay to see a psychiatrist–$273 per appointment–was higher than the out-of-pocket cost of seeing that same psychiatrist (did I mention it was a craptastic plan? it was a craptastic plan). I skipped the DME entirely for that whole year, instead making do on out of date supplies and hacking things together when I needed to.

On Obamacare? On one of their most expensive plans, that is way, way better than my old craptastic plan? I’m paying about $243 a month. And they cover my therapist. And I have a $10 co-pay for prescriptions. A $15 co-pay to see a psychiatrist. Let’s do the math here:

In a month in which I fill all my prescriptions, see my therapist, and see my psychiatrist (who I do not actually see every month), pre-Obamacare I would have spent $1756. With Obamacare I’m spending $518. That’s a $1238 difference. I’m spending less than 1/3 of what I did before.

Look at that $518, and don’t tell me I’m getting free healthcare. That ain’t free. That’s still a hefty chunk of change. But it’s a lot more doable. Again, for comparison’s sake, let’s show that info in a different form:

Pre-Obamacare = $1756

Post-Obamacare = $518

Difference = $1238

I’m not coasting along on handouts from the government. I’m not living big at the tax-payers’ expense. I’m working my ass off and being as frugal as I can while living in a high-cost city and dealing with chronic medical conditions. I am also paying my taxes without complaint when I have work, because I’m cool with my money helping to pay for unemployment, health care, ambulances, cops, firefighters, and roads.

So, hi. My name is Diana, and I’m on Obamacare.

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No more (the year-in-review downer post)

Posted by diana

I would like a year with no more cancer. No more friends, family, or coworkers getting frightening diagnoses, or dying right as they were supposed to be getting better.

No more unexpected emergencies for supposedly run-of-the-mill intestinal problems, that turn a half hour surgery into a four hour series of surgeries and require a second surgical team. No more lost sounding text messages from dad as he ends up spending his day in the waiting room, worrying, and the best thing I can do is send him pictures of puppies.

No more putting beloved pets to sleep because of money. Because the surgery that was supposed to fix the problem (and wiped out all of your savings) only bought you another two months.

No more convoluted wills designed to set all beneficiaries at each other’s throats. No more reassuring the rabbi that I really don’t give a fuck about grandma’s money and think he earned it by putting up with her for 15 years. No more talking to the rabbi. At all. (Unavoidable, though. I still need to deal with the household items she left me. Reminders that neither of us were ever what the other wanted, and her desperation to make me into what she thought I should be. Reminders of her need and loneliness… And my desire not to be dragged down into it.)

No more curses you can’t undo, left by grandfathers you never knew…

Let 2013 take those things with it.

Aftermath: Dealing With Mom’s Cancer

Posted by diana
Mom and me, Spring 2011

I wanted to write an entry all about our family’s experience with my mom’s breast cancer. I wanted to write something positive and hopeful. And I find that it’s just too painful to dive into right now. Nothing bad has happened – no need to worry – I’m just not ready to deal with it.

I don’t think that’s ever happened before. That I wasn’t willing to dive into an emotional place and figure things out. I guess that’s the difference between grief and fear. I’ve dealt with grief before, but there… the worst has happened. There’s no anticipation or uncertainty. With fear… it’s all in front of you. It hasn’t happened yet. It may not happen. But you don’t know.

When I was a kid I had this nightmare of being at my mom’s funeral. I woke up crying, and my mom was there and holding me and I was still terrified. I don’t know if I ever told her what the dream was.

Dad once told her that, in a disaster, if he had to choose between saving the kids and saving her, he knew he would have to save us and not her, even though he’d want to save her. Because she would never forgive him if he didn’t protect us.

She’s the heart of his life. The heart of our family. And in some ways she is so very fragile. She’s had a hell of a life, and I wish I could protect her. Actually, I wish I could go back in time to when she was a kid and protect her. I’ve always wished that, so I guess I always knew, on some level, that she’d been badly hurt when she was a child.

I remember when I was a kid her being sick, at home, on an IV and throwing up every 20 minutes. Rocking back and forth in bed and crying. And I would pet her hair and pretend I was her mother and try to make her feel better. And wish I could time travel.

My mom is the heart of my life. And I realize she probably shouldn’t be. It’s like that line from Cordelia in King Lear, about how it’s inappropriate to love your parent all, more than anything else in the world.

You have begot me, bred me, loved me: I
Return those duties back as are right fit,
Obey you, love you, and most honour you.
Why have my sisters husbands, if they say
They love you all? Haply, when I shall wed,
That lord whose hand must take my plight shall carry
Half my love with him, half my care and duty:
Sure, I shall never marry like my sisters,
To love my father all.

I told Jason, when we got back from LA after finding out she had cancer, that my mother was the person I loved most in the world. It’s true. And it’s terrifying. Because I know some day I will lose her. And I’m pretty sure Jason didn’t like hearing all of that, either.

Oy.