Wednesday, October 31, 2012

Still fun and games, for now.

In other words, nobody around here is losing an eye, at least according to current plan.

So, we went up to Duke Eye Center yesterday. We were there from about 8:45 in the morning until about 6:45 at night. It was a long day, and people were shining bright lights in my eyes like they were expecting me to give up war secrets. But with the exception of one monolithic, lumbering orderly who expected me to follow him to the CT area without so much as a glance at me or a kind word, every single person I met was thoughtful, helpful, and gentle, even when they were doing something frightening.At one point a nice young doctor approached me with something she referred to as "a metal Q-Tip" and my handler nearly had to have me restrained in my chair.

My handler was Greg, BTW, and if ever a fella passed the sickness portion of the "in sickness and in health" exam with flying colors, it was he. Unfortunately, the test isn't over yet.

You would think, with all the poking and prodding and shining and flashing and testing that I would have been a bit testy at the end of the day, but I was feeling surprisingly calm and grateful. Dr. Mruthyunjaya, who is the boss of my eye, was incredible, even as tired and stressed as I was. He was direct and informative and managed to be compassionate at the same time. I seriously love him like I love Michelle Obama. Except Michelle tells me to exercise and she can't save my life. So maybe I love Dr. M. more.

He confirmed what Dr. S. had told us. It's a melanoma, though not the kind of melanoma you get on your skin. I didn't do anything to cause it. It's medium-sized. We will treat it aggressively, which means with a radioactive patch sewn behind my eye for five days. Yes. I am badass enough that I get an eye patch IN my eye. A nuclear one. Take THAT, sissy pirates.

The doctor is optimistic that this treatment will address the problem. He acknowledges that there is still some chance of metastasis, but he is optimistic that it won't occur. He didn't say what Dr. Google told me, that if this tumor does metastasize, I will die from this cancer. We are not going there right now. Right now I have a doctor who knows his sh*t, who is going to launch a full-scale nuclear attack on this tumor, which I have begun to refer to as "The Situation." It helps me somewhat to think of it as having a spray tan and a low IQ. It's going to be sitting there, waiting for someone to bring it a beer or some hair gel, and it's never going to know what hit it.

I would be lying if I said I wasn't scared. I'm very scared. Only an idiot wouldn't be scared. But I believe in God, and I believe in my doctor, and I believe that God moved me away from the Podunk, GA Regional Medical Center so I could be near this doctor. I'm in good hands, and right now I'm choosing to trust in that. A friend recently posted on Facebook something to the effect of, "Don't ask, 'Why was this done to me?' Ask, 'Why was this done FOR me?' When you do that, everything shifts." So I am trying to remember to ask the right questions, and to be quiet while I wait for further instructions.

Saturday, October 27, 2012


I recently got the nicest compliment from one of my dear internet friends on my great attitude. I mention that she's an internet friend not to suggest that she's any less of a "real" friend, but to point out that the only parts of me she sees are the ones I post online. I try to be honest in what I post; that is to say, I would never post anything, about myself or about anyone else, that I know to be untrue.

But let's face it: most of us don't post our WHOLE lives online.There are certain things we avoid posting, in order to avoid upsetting others, or to avoid making ourselves look bad. Given the choice between two pictures to use as our profile pic, we pick the more flattering one. So perhaps my friend, who was so impressed by my positive attitude, wasn't getting the whole picture.

The thing is, for about a week after my diagnosis, my attitude really was great. I knew I had cancer. I knew, give the type of cancer I have, that it could end badly. Yet I was okay. I wasn't bitter, recognizing that bad things happen to everyone at some time. I prayed to St. Paraskevi and St. Lucy for intercession. I felt that no matter what happens, even if this cancer kills me, that things would be okay. I reflected on the blessings: proximity to a world-class hospital, medical insurance, the fact that our move was completed by the time I found all this out. I felt really, really good.

And then I didn't.

One day, in the midst of reading a note from a friend, my great attitude deflated like a souffle. Who knows why. It wasn't that the note said anything particularly upsetting or offensive, or in fact, terribly different from other notes I had received. But my visceral response to one line of it was, "Well, fuck you." Which wasn't fair, because I had been thinking the exact same thoughts to myself minutes before I opened the note, but when someone else admonished me so...not interested. (Kind of like when I look in the laundry room and think, "I have GOT to deal with that mess," but when my husband suggests, as politely as possible, that I think about getting to the laundry room, I get my back up and suddenly remember several pressing episodes of "Designing Women" that need watching while I eat a bag of cheese curls.)

So anyhow. My lovely attitude evaporated, and I was left with horrible, mean little me. Several of the less attractive stages of grief descended on me at once, pummeling me with their tiny, scaly fists. Anger, and Depression, and even Bargaining, during which I suggested to God several people whom he might more profitably afflict with eye tumors. I won't pretend Ann Coulter's name didn't come up.

I took to my couch with a bag of Halloween candy and a blanket and watched TV for the rest of the afternoon, which was restorative. I prayed a little, though not especially coherently.

My attitude is better now. No longer fabulously serene, but not angry or sad, either. Just waiting for my appointment on Tuesday, waiting to figure out what's next. And then to go and do it.

Tuesday, October 23, 2012

What Not to Say to Eye Tumor Girl

But first, an announcement: my appointment with the oncologist is next Tuesday morning at 9:15. Prayers appreciated, as always.

Preparatory to this appointment, I had to have some blood work done, as well as a chest x-ray. The good news is that both were normal. The woman who registered me for the chest x-ray was very nice. You could just tell she had a good heart. I also wanted to kill her. 

Probably most of you are not in the habit of registering patients with ocular melanoma for chest x-rays. But if you happen to find yourself in that field, here are a few things you might want to remember not to say.

1. "I hope this doesn't offend you, but I know a great doctor. His name is Jesus."  This one came almost right out of the gate. Now, as it happens, it doesn't offend me personally. I'm an Orthodox Christian, my belief is pretty absolute. However...she had no way of knowing that. I could have been Jewish or Muslim. I'm pretty Semitic-looking, and either of those would be quite plausible. In that case, I would have been pretty offended. I could have been atheist or agnostic. I could have been a Christian who was nonetheless struggling with a recent, very upsetting diagnosis, and pretty angry with God, Jesus, whoever I felt allowed this to happen.

Here's a useful tip: If you ever find yourself tempted to preface a statement with, "I hope this doesn't offend you, " know that there's a good chance that what you're about to say could offend your hearer.. And then don't say it.

2. "You have such beautiful eyes. My kids always tell me I have beady eyes." Um, ma'am? I KNOW you read that sheet in your hand that states clearly that I have a tumor in my eye. I would rather have a couple of beady, healthy eyes than a beautiful pair that has cancer in one of them. So, um, please stop talking now. Please. Stop. Talking.

3. "Oh, you're a divorce lawyer? Let me spend the next ten minutes while you're captive at my window seeking free legal advice from you." This wasn't as bad as the time I had lost a few units of blood following a second-trimester miscarriage, and the nurse wheeling me to my room on a gurney kept pumping me for advice on her daughter's custody case while I was too weak to even lift my head. I mean, this time I was at least physically capable of walking away. But still. I was vulnerable. I was in need of a medical test that I couldn't get until this woman finished processing my paperwork. It was taking advantage. And even if it wasn't? I was a little too preoccupied with my medical situation to worry about a complete stranger's legal situation. Again, stop with the talking.

At the end of all this, this dear woman gave me her e-mail address and asked me to keep in touch. Because I think she really did, in her own way, care what happened to me. But there's a part of me that wants to e-mail her this blog post.

Saturday, October 20, 2012

I got cancer...and all you got was this lousy blog.

You know you're in trouble when the eye doctor pulls out the big 3-D multi-part model of the eye to show you what the problem is.

I just didn't know how much trouble.

To begin at the beginning, or at least further back: I'd been having some funky little eye problems for months. Not that funky, and little enough that even a hypochondriac like me could ignore them. A few years ago, I had a couple of episodes of migraine aura, as diagnosed by my ophthalmologist. These symptoms were similar, and although they were more frequent, they seemed much milder. So I concluded they were as harmless as the doctor had assured me the migraine aura was, and ignored them. Plus, I was a little busy. After four months off of work, my husband had gotten a new job out of state, and I was consumed with getting our house sold and getting ready for the move.

Within days after we settled into our house, though, the eye symptoms I was having got even more frequent, and lasted longer. They were more intrusive. I found myself an ophthalmologist online and made an appointment. Out of fear or denial or ignorance, I didn't mention the problems--just asked for a routine appointment.

The doctor, Dr. P., was young, and seemed smart, but also new enough to practice that she could focus on either clinical details, or bedside manner, but not both at once. She picked clinical details. She told me it looked like I had a detached retina in my right eye. She made an appointment for me with Dr. S., a retina specialist a few miles away. For, like, immediately. You take a moment and thank God right now that you weren't on the road at the same time and place as a panicked hypochondriac with fully dilated pupils and an allegedly detached retina. Those things make it hard to see things like, say, signs that say, "Do Not Enter."

Anyhow, my eyes and I made it to the retina doctor. He was young, too, but him I liked. He told me that there are all kinds of "typical" abnormalities in the retina that can look like detachments, but which are really harmless. He was pretty sure that was what we were dealing with.

The good news was that Dr. P. was wrong.  The bad news was that Dr. S. was, too.

Did you know that you can get melanoma on your retina? Neither did I. But apparently you can, and apparently I did. I mean, I don't even know how you're supposed to get sunscreen in there. But whatever. That ship has sailed. I have cancer in my eye.

The good news: I now live near a major university medical center with an eye center. My husband is employed, as he wasn't for four months. We're together again, as we weren't for six weeks. We have insurance. And Dr. S. thinks that there's a "reasonably good" chance of preserving the vision in that eye. He thinks we caught it in time.

The treatment regimen is going to involve me being hospitalized for about five days. A radioactive seed (I know!) will be placed behind my eye, then removed. After that, I'm not sure.

I haven't Googled "ocular melanoma" because I don't want to see anything that's going to freak me out. Dr. S. was "99.9% sure" that's what this is. I'm going to wait and talk to the ocular oncologist, as soon as he gets me an appointment, and base my freaking out on information that pertains specifically to me. I'll let you know when I get that.

Them as prays, please commence to praying. We've got a little fight ahead of us.