cancer

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.

I Remember

Posted by diana

One of the things that infuriated me when Carolyn died when I was a kid was the feeling that everyone else had forgotten about her. Within weeks, days.

We don’t actually forget that quickly. Not those who were close. Not those who cared deeply during life. The ones who forget are the ones who didn’t know the person. Who didn’t know Carolyn, who didn’t know Jay. When they express grief, it’s real enough. But it’s at a remove. The grief they’re feeling is for us, not themselves. They didn’t have a hole ripped in their life. They didn’t have a part of their soul torn away. Their world didn’t change. But they know ours did.

So they offer sympathy. It’s what humans do. We see another person in pain and our mirror neurons flare and we offer what comfort we can. And if those people move on and don’t remember the loss next week, that’s fine. That’s normal.

But those who grieve… we often do ourselves a disservice. We become silent after the first few days. The first few weeks. We become silent and grapple with it alone. Perhaps because we feel there’s nothing else to be said. Perhaps because we don’t want to intrude on others and keep repeating ourselves. Perhaps because we measure our grief and think it must be so much less than that of others… wife, husband, child, sister. But it doesn’t matter.

We leave each other alone when we’re least capable of handling it.

I haven’t forgotten. I think of Jay every day. I think of the Child and Lisa and Jay’s parents (all three) and Mother of the Child, and Jay’s sister, and Ken and Jen and everyone else hurting. I don’t want to force my grief on them. I don’t want to drag them back into pain if they’ve managed, even for a moment, to forget the hurt. I just want to say I remember.

I remember Jay. I remember what you’ve lost. I remember you.

The Price of Writing, My Broken Myths, and Jay

Posted by diana

jay at the beachI’ve had writers block for seven years. What I consider writers block. I realize others have different definitions. But. Largely, the joy had gone out of it. Writing was like pulling teeth. I was still good enough at it to make a living, but… My relationship with my writing had become adversarial. And I figured out why a few months ago.

Writing = Death

Oh, it doesn’t, really. It’s not a logical belief. And, when I go back and examine the events that lead me to this belief, I can even see that it doesn’t make sense. But. My internal mythology is that Carolyn’s death is what gave me my writing.

The first play I wrote was about Carolyn. It got produced. It won me awards. And all the plays that followed after–they got me the scholarship that let me go to Scripps. Hell, my career as a video game writer came out of my playwriting.

But the myth was that the price of my writing was Carolyn’s life. That I never would have written otherwise. Which isn’t true. And I can go back and look at my writing from before then. It mostly sucks, but what do you expect from an 11 year old? The play I wrote about Carolyn, yes, that may well have been my first *good* writing. Because I cared. Because I bled on the page. For the first time I was writing about something gut wrenching and emotional.

But you know what question I used to ask myself? If I would give up my writing to have her back. Because kids ask themselves stupid questions like that. Because they assume it’s their fault.

At first the answer was yes, but as time went on it began to change. And I was ashamed that I didn’t know. The more my writing became central to my life, the more ashamed I felt. And two decades after her death… there was a day when I finally realized that no, I wouldn’t give it up. I was no longer capable of giving it up…. and I stopped writing.

I never gave up on writing. I just stopped being able to do it. Self defense. If me writing means people I love dying, well. It isn’t logical. No one person has that kind of effect on the world around them. But logic has little to do with fear.

I went on a writing retreat years ago with Jay and his then girlfriend, Shannon. I remember an evening talking with them about my block. And Jay telling me it was a matter of getting out of my own way. I was holding onto something, and he didn’t know what, but it was keeping me from writing. I just had to figure out what it was and let it go. And I remember, also, that night crying while they lay on either side of me, holding me.

10383767_10100267848221944_2772895858771528119_oThe last few weeks, I asked myself that stupid, awful question again as Jay was dying. Would I give up my writing if it meant keeping him alive? Yes.

But he died anyway.

I think he would take a certain satisfaction in knowing he’d been right all along, that I was holding onto something and getting in my own way. And I think he’d  be delighted he’d helped demolish that myth of mine. But, oh, I wish he hadn’t.

 

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.

There is too much. Let me sum up.

Posted by diana

I’ve been working at this place since October.

I moved to this place. In large part because of this:Ragnar and The New Backyard.

I’ve become obsessed with setting up my place. Which means that Apartment Therapy has become my porn.

We’ve been doing a narrative sprint at work for the last week… two weeks? Time blurs. Which has landed me with both a tremendous sense of a relief and a sore throat.

I’m trying to adapt to my new place and get past the sense of isolation I have; which is only natural, moving from an intentional community where people dropped by in the evenings every day. Fortunately, I do know some folks in the area. Unfortunately, planning ahead has not been my strong suit lately. And I’m in nesting mode, which means I want to stay home rather than going out.

A bunch of folks (from completely different parts of my life) have all suddenly started calling me Di. And I’m okay with it. I may even like it, but don’t quote me on that. (As my brother-by-another-mother, Eric Hindes, can attest, I was very strongly opposed to nicknames as a kid).

Jay is dealing with cancer. Again. Which is not my story, but is something I think about every day. (Fair warning, the video on the other end of that link is emotionally devastating. But well worth watching.)

Here. On a cheerful-ish note, this is a picture from a coffee table set I’ve been refinishing (I got it from your mom nearly a decade ago, Eric!)

Unfinished and Refinished
Unfinished and Refinished

The table on the left hasn’t been touched, while the table on the right I refinished (oil finish, no stain). Before, they looked pretty much identical. I believe they’re teak, though they might be walnut.

You Can Never Go Home…

Posted by diana

I’ll be visiting my parents this weekend for the first time since April.Except it truly doesn’t seem that long ago to me. It feels like I was just down there.

My mom really wants me to visit more often. She keeps saying how nice it was when I was visiting every other month last year. But I can’t do that. I did it, last year, because of her cancer. Because I wanted to be with her and help her. And because I was terrified and just wanted to cling to her…

All my life, my parents have been my focus. Their story, their narrative has been the one that defined my world. And I’m coming to understand how much of that narrative is fictional. Also, that I really need to be living my own life. Creating my own narrative. Really, you ought to be the main character in your life. Not just a spear carrier.

 

Spring and Fall: To a Young Child

Posted by diana

Margaret, are you grieving
Over Goldengrove unleaving?
Leaves, like the things of man, you
With your fresh thoughts care for, can you?
Ah! as the heart grows older
It will come to such sights colder
By and by, nor spare a sigh
Though worlds of wanwood leafmeal lie;
And yet you will weep and know why.
Now no matter, child, the name:
Sorrow’s springs are the same.
Nor mouth had, no nor mind, expressed
What heart heard of, ghost guessed:
It is the blight man was born for,
It is Margaret you mourn for.

 – Gerard Manley Hopkins

It’s been a hard year. A hard few years. Mom’s cancer, Jay’s cancer, Donna Marie dying… And now one of Jason’s closest friends dying of adrenal cancer at 34. It’s not fair, but fair hardly matters outside of kindergarten and the constitution.

 

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.