Wednesday, December 31, 2008


When I first found out about this thing, it hit me like a pound of herring*, and I felt like a different person. Different in some unexpectedly but also slightly cliche good ways. Like, reordering of priorities, consciousness of mortality, appreciation of "the little things", true empathy with anyone in suffering, etc. etc. Just basically a more conscious and appreciative and kinder and deeper person. Good things, right?

But two and a half months on and still in "watch and wait" mode, I find myself becoming complacent and forgetful. Wanting to be a deeper person but not wanting to have to actually suffer to achieve it.

Next MRI scheduled for Jan 19, consultation Jan. 22. I'll find out then if I have to have my head cut open or not. Whether or not I'll have to experience some more-or-less real suffering. Hopefully less!

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

*(just trying to come up with an alternative to the cliche "ton of bricks")

Wednesday, December 17, 2008


For the life of me, I cannot remember what I was going to say.

Living alone

I love living alone. I never feel lonely. I am selfish and self-absorbed, so it suits me. Nobody to have to consult with, nobody to have to negotiate or compromise with, nobody to get in my way. I do what I like when I like. Watch tv at 3 am, sit around all day Sunday in my pajamas, leave clothes hanging on doorknobs, or in piles on the floor if I feel like it. Eat, don't eat, cook something yummy for dinner, or nibble on leftovers standing at the sink. Whatever I feel like doing. Clean house, don't clean house, whatever I feel like doing. Company coming? Then I clean house. Just me and the cats? They don't mind the dust, neither do I.

I am not lonely. I don't have a man in my life, and don't feel the need. I'm 51 years old, a confirmed old bachelorette, and likely to remain so (to paraphrase Henry Higgins).

And yet the prospect of surgery and of lengthy recovery without anybody to help - well, who knew. Serious illness wasn't something I was thinking might be a possibility. Who thinks about that? I never did.

Ah well. What can you do? This has been my path, and I wouldn't change a thing. I'm a proud old spinster and I'll manage somehow.

Me and Kate Hepburn. Yeah right.

Friday, December 12, 2008

Mental state

I'm bad. I'm so bad. Ever since the diagnosis I've had trouble taking my job as seriously as I should. This is really, really, bad, because lives depend on my doing my job well. The lives of animals, yeah, but if I didn't think those were important, I wouldn't be in this field. And it's not like I'm blowing off my responsibilities. But I can't seem to shake this sort of obsessive inward focus, this amazement and worry about my brain and my future, and everything outside my own skull just seems somehow a little less compelling. I don't want to go to work. I just want to hang out with the cats in my sunny apartment all day, puttering around, taking it easy. It's almost as if I'm already thinking of myself as in post-op recovery, because if I have to have surgery, that's sort of what I vaguely envision it as being like. (Except of course that I won't be able to bend over or lift anything or cook or do any housework or laundry, and I'll be tired all the time, and have to sleep with my head elevated, and be on a bunch of drugs for who knows how long. Etc. Assuming everything goes well, that is! But I digress.)

This is the PRECISE thing I did NOT want to find myself doing! The self-absorption of the seriously ill - I've seen it so many times in my family, and I didn't want to be doing it myself, especially since I have such a strong Leo tendancy to be self-absorbed all the time anyway. And now look at me! Self-absorbed to the max! Fight it though I do, as hard as I can, yet despite all my best efforts I'm doing it anyway!

Aaagh! I can't stand myself!

Friday, November 28, 2008

Fear? No fear? Fear? No fear?

So when I'm feeling fine (and complacent?) am I being brave or head-in-the-sand? Am I "ill"? I have a golfball-sized benign brain tumor wrapped around my right optic nerve and right internal carotid artery. If I doubt that, all I have to do is close my right eye. Yup, there it is. Sometimes bigger, sometimes smaller, blank fuzzy gray blind spot. That's my "benign" brain tumor, choking off my right optic nerve. But other than that I feel fine!!! Denial takes hold. Friends and relatives worry and ask me "How do you feel?" I feel FINE. Fine, I tell you! Just fine!

It's so weird. Here I am with this big scary diagnosis. But I feel fine. Really. I do. I feel fine!

Not telling

I got a joke email from someone I barely know that had a stupid reference to brain tumors in it. I refrained from emailing her back. Yay me!

Wednesday, November 26, 2008


Got my new bifocals Friday. Whoo-ee! I can see again! Indeed, everything is so supernaturally sharp and clear, it almost doesn't look real.

I am enjoying the heck out of my new surreal vision!!!

Sunday, November 16, 2008


My sister told my 20-something neices, even though I didn't want her to. I am fine so far. They have so much on their plates, both of them. They don't need to be worrying about me, especially since I am just going about my life for now. I tried my best to reassure both of them. I hope they are reassured.

Tuesday, November 11, 2008

Still scared

I think to myself that I am blase. I think to myself that I am almost-comfortable with terms like "brain tumor", and "neurosurgery".

But then I think again about all the big unknowns and decisions postponed but still waiting, lurking in the future. And my breath catches in my throat and my heart starts pounding and I am still scared, just scared.

Wednesday, October 29, 2008


What does it mean to have an almost asymptomatic benign brain tumor if you don't have surgery?

Well, to me right now it means constantly going in and out of denial. I don't have to clean my apartment right down to the bottom of my sock drawer just yet - I don't have to draw up a will just yet - I don't have to arrange cat care just yet - because it's (less than) three months away and maybe it's not growing at all - probably it's not growing at all - I won't need surgery - how could I need surgery? I've never had surgery in my life. I can't imagine having surgery. I won't imagine it. I'm not gonna need it. I refuse to need it. I feel fine. No headaches, no dizziness, no seizures.

Then I go stand in front of the mirror and close my left eye. The rest of me is still there, but my face is a dim pink blob disappearing into a foggy gray cloud.

That's on a good day.

On a bad day, I have no head.

Oh. Right. Brain tumor.

I think I'm getting a headache.

Friday, October 17, 2008

Getting paranoid

I woke up with a terrible pain in my left hip, like I'd pulled a muscle or something. I thought maybe I slept on it funny. I did some stretches, but it didn't help. I called in sick ("stomach upset - I'll be in as soon as it clears up" I lied) and went back to bed, sleeping carefully flat on my back to give this hip thing, whatever it is, a chance to straighten itself out. I woke up two hours later with it aching worse than before.

Oh no, they said it was benign but maybe not and oh no it's metastized already, it's bone cancer, it's everywhere, I'm gonna die.

I thought I was scared of every ache and pain those ten years that I spent with no health insurance. That was nothing compared to how scared I am now.


The pain went away a few days later.

Monday, October 13, 2008

More fear

So the opthalmologist finally called me back at the end of the day and I got to ask him all the questions I could think of, which weren't many. I am still royally pissed at him. I had to practically drag information out of him. I understand that he is just an opthalmologist and not a neurologist or a neurosurgeon, but he's all I've got right now, and even though he doesn't want to be pinned down to any definitive statement, he's got to give me something to go on for now if I have to wait a whole month before I can learn more.

On the other hand, I've had the whole weekend to kind of come to terms with the initial shock and start educating myself on the subject a little bit. If we had been sitting face to face in his office on Friday when he told me the news I probably wouldn't have been able to come up with as many questions as I did this evening.

On the other hand, one of the things I found out was that since my carotid artery is involved, I shouldn't engage in any strenuous exercise, such as weight lifting. Wasn't it this guy's responsibility as a doctor to tell me that right off the bat? For all he knew, I could have been doing weight lifting all along! I could have had a stroke!

Yeah, I am still plenty pissed at this guy! Wait'll I tell Dr. Ma and the colleague with expertise about it!

Trying to get an appointment with the neurosurgeon

So the fancy neurology eye doctor guy is actually a neuro-ophthalmologist. I finally looked it up. I feel stupid. I didn't even know what kind of a doctor he was. I've decided that I don't like him. Nyah! He called me on my cell phone while I was driving to tell me what I already suspected, that I have a tumor behind my right eyeball. A benign tumor. Well thank God it's benign, eh? "Good" I said. I think maybe that threw him a little, because that's all he told me. "Well, how big is it?" I asked. He gave me measurments in centimeters, which I couldn't picture. "The size of a grape, a golf ball, a tennis ball?" I asked. "About the size of a golf ball" he said. "You should go see a neurosurgeon" he said. And then he just kind of left me up in the air. You'd think he'd never diagnosed somebody with a brain tumor before. "Do you want to somebody here in town?" he asked me. "Yeah, sure" I said. What was I supposed to say? I don't know one neurosurgeon from another. Hey, man, you're the fucking doctor! I think he just pulled a name out of thin air. This was at 4:00 Friday afternoon. I scribbled the name down on a scrap of paper while I was stopped at a red light. The light turned green and I had to drive a few more blocks until I got to a place where I could pull over. Then I immediately called the neurosurgeon's office. They had closed at 3:00, would reopen at 8:00 Monday morning. I would have to wait all weekend to even be able to find out how soon I could get an appointment. It was a long scary weekend full of uncertainty. Monday morning, I watched the hands of the clock as 8:00 rolled around. I called the instant I could. "Next available appointment is Nov 11" I was told.

! ! ! !

You've got to be fucking kidding me. Lady, I've got a brain tumor! (Of course, everyone who calls their office has a brain tumor. Get in line!) I'm supposed to wait an entire month before I can even get a prognosis?!?!?

This is unacceptable. I'm calling the neuro-ophthalmologist back and get a different referral. But his office doesn't open until 9.

The second eye doctor, the colleague with the expertise, he and Dr. Ma spoiled me. They were so sweet and caring. They took care of me. The colleague even called the neuro-ophthalmologist himself for me while I was there to get them to sqeeze in a timely appointment for me. I didn't realize how lucky I was to have such sweet and caring doctors as those two. Now I'm on my own I guess. Have to learn how to navigate this maze by myself. Just like everyone else.

Saturday, October 11, 2008

part 2

So finally my old glasses are so scratched I can hardly see out of them even if the prescription was still appropriate, which it's not. I seem to be developing good old age-related farsightedness on top of my lifelong nearsightedness and maybe it's time for bifocals (ugh!). This is aside from the scary right eye vision loss. And on top of all that I know I'm going to have to qualify again at the rifle range soon for my job. I haven't had to do that since before the vision loss started. I'll never qualify with my eyesight the way it is now, and my glasses all scratched up and outdated. It's time to bite the bullet. I have to get new glasses. I have to face reality in an eye doctor's office.

Of course I don't have a regular eye doctor, as I don't have a regular anything else doctor either. But one of my co-workers has this eye doctor who she says is an absolute artist when it comes to fitting you with the correct prescription, so off I go to this wonderfully sweet, kind, gentle, soft-spoken Korean eye doctor. She does all the usual tests and then some others I've never had before. She puts in the drops and shines the bright lights (which glare excruciatingly in my hyper-sensitive left eye, and, frighteningly, disappear completely in my half-blind right eye). She has me look into the thing like a video game and hit the clicker every time I see a light wink in my peripheral vision. She only has me do it with my good eye, though. I'm thinking I could have done it with my bad eye as well - I still do have peripheral vision with that one, after all.

Dr. Ma is very concerned. "Your left eye is better than your last prescription" she tells me. "And the optic nerve is very healthy. But your right eye - " She pauses. She is trying to break it to me gently. She's so sweet. I know it's serious. I've known it for a long time. I was just too chicken to find out before now. But now I'm ready. Better late than never, eh? "Your right optic nerve is - very ill" she says.

"Very ill." Aw. That's such a mild way of putting it. She wants me to come back tomorrow (tomorrow!) and see her colleague who has more expertise "with these sorts of cases".

Okay. So I take a half day off which ends up being a half day + an extra 45 minutes (good thing my boss is a fairly flexible type), and I sit through another eye exam. More drops, more excruciatingly bright lights, and I have to wear a protective film strip behind my glasses for the rest of the day to protect my dilated pupils. Shit, if I'd known it was going to be like this, I would have made the appointment for the end of the day instead of for lunchtime!

So after all this, the colleague with the expertise tells me that my right eyeball is stuck, not rotating properly, and something is causing "a problem" with the optic nerve. It might be a thyroid problem, it might be a "mass". He doesn't want to say "brain tumor". He doesn't want to scare me. He doesn't want to say anything definitive without further tests. "You should probably get an MRI" he says. He's going to refer me to a neuro-opthalmologist.

My health insurance is a PPO instead of an HMO. "That's good" he says. "This way we can send you where we want." The one they want to send me to has an office 15 minutes from my apartment. But he's booked up months in advance. The expertise colleague calls the office and wangles me an appointment for next week.

"Can I still get new glasses?" I ask. "I really need new glasses, look at these!" "No, I don't want you to throw your money away if your vision might improve" he said, and sent me off to the neuro-opthalmologist.

So I still need new glasses!

Tuesday, October 7, 2008

Back to the beginning, part 1

I'm not exactly sure when I first noticed the problem. It's not like I ordinarily go around closing one eye at a time to see how the other eye is doing. I tend to think it was sometime around the autumn of 2006. My vision started getting a bit more blurry than usual. Hm, time to get new glasses, I thought. The low slanting light of autumn was causing more glare and discomfort than I ever remembered noticing before.

At some point I must have closed my left eye for some reason. Maybe I got something in it and closed it to rub the irritant out. I don't remember. I don't remember the first moment, the first discovery. All I remember for sure is that it wasn't gradual.

I'm nearsighted, have worn glasses since 5th grade. My right eye has always been weaker than my left, but I could always see out of it. All of a sudden I was was shocked to find out that my central vision in that eye had completely disappeared. My peripheral vision was still okay, but about 40% right in the center simply vanished into a undifferentiated gray fog.

Oh my God, I'm going blind. That was my first thought. Macular degeneration? Cataract? Diabetes? I found a site on the Internet that purported to show what the world looked like to a person suffering from any of those things. None of them matched my central gray foggy nothingness.

A reasonable person would have hustled themself off to a doctor post-haste. A reasonable person would waste no time when it came to a question of saving their sight. But I am not a reasonable person. I am a person ruled by fears and phobias. And I have an utter phobia of doctors. I think that this is the Universe's way of laughing at that particular quirk of mine.

So I dawdled. I procrastinated. I indulged in wishful thinking. "Maybe if I ignore it, it'll just go away." Hah! Even I knew that hope was completely preposterous. 40% of the central vision in my right eye had simply stopped. This would fix itself on its own? Don't be ridiculous.

So I grieved. I mourned. "I'm going to go blind" I wailed to myself. I'm a visual artist, fer cryin' out loud. This is like Beethovan's deafness. What could be more horrible?

I spent my days driving around, staring out at the world. "But I can still see that - and that - and that ... " I would argue with myself. Looking at leaves, cars, the curb, license plates. I could still see. I could still see details. I could still see sharp edges at the borders of things. Even though sometimes it felt like I was seeing double, I could still see. So maybe it wasn't really that bad? I would think hopefully to myself. Oh yeah, sure, right! I would immediately scoff right back. Face the music, kiddo. You're going blind.

I was sure it was macular degeneration, because you lose central vision in that, too. I am over 50, after all. That's when it tends to hit, I read. There's no cure, but there is a treatment to slow down the vision loss. The treatment sounded so painful that I had to stop reading. And the illustration I found on the Internet looked nothing like what I've been experiencing. Central vison was replaced by a solid black hole. Mine isn't black - it's foggy gray - maybe that's not what I have -

So then naturally my hypochodriacal next thought was that I must have a brain tumor.

Even though I can't stand going to the doctor and will avoid it at all costs, I am a terrible hypochondriac. I think this stems from ten years of no health insurance and constant fears of being unable to afford health care. Each little ache and pain immediately turned into "Oh my God, it must be cancer, I'm gonna die." Those ten years were fortunately unmarked by any illness or injury at all, other than a bad cold or two, but the fear never really left me.

So here I am with this weird and annoying foggy gray spot where my central vision used to be, terrified of what it might turn out to be, terrified of losing my driver's license and with it my job, and so I don't go to the doctor. I don't go and I don't go and I don't go.

Sunday, October 5, 2008

Saturday, October 4, 2008


Afraid of ...

~ insufficient insurance coverage
~ losing my driver's license
~ losing my job
~ losing my health insurance
~ going blind
~ becoming disabled
~ losing my mind
~ dying before my pets and leaving them homeless
~ dying before my parents and causing them grief
~ not being able to keep this a secret

Also afraid of:

~ pain
~ suffering
~ inconveniance
~ Republicans
~ economic chaos
~ environmental disaster
~ climate change
~ mass extinction

Hm, yeah, think that about sums it up.


I am lazy and self-indulgent, there's no denying it. It's so easy for me to use this as one more excuse to slide into careless nothingness.

But I don't want to. I don't want to go around feeling sorry for myself. I don't want to tell myself that I need coddling because aw, poor baby, this is hard to take.

Nope. I have work to do.


Comparison of desk staff at the (so far) three doctor's offices I've been to:

Eye doctor #1: brusque, hurried, cold. (Although Dr. Ma herself is an absolute doll. Much as I hate going to doctors, if she was a doctor of everything, I'd gladly go to her for everything.)

Eye doctor #2: brusque, more hurried, very cold.

MRI office: friendly, pleasant and helpful.

Which of these people do you think is having a more pleasant day herself behind the counter? (And why are doctor's receptionists always women?)

And I myself am often guilty of being brusque, hurried and cold to the people who come to me for help in my job. Hello, see what it feels like? I'm gonna try and remember to be more like the MRI women from now on.

Friday, October 3, 2008


I am not going to bother with paragraphs today, except for this one. This will be fairly stream of consciousness because I have to get this stuff off my mind just now.

So I went for the three and a half hour eye exam with the neurologist eye doctor today, and he said the same thing the second eye doctor said - that it's either a thyroid problem or a brain tumor. Only even he would not say the words "brain tumor". "It might be a tumor" he said. It's a little like the one and a little like the other and not quite exactly like either of them, not exact enough for a real diagnosis. Nope, we need to do more tests. So now I have to go for two MRI's, one of my brain and one of my eye. I had to ask where to go to get them. He looked at me as if I had suddenly started speaking pig Latin. "Well, you could go across the street" he said. I'm not that stupid. I am actually aware that there is a gargantuan hospital across the street from the specialist eye center. No, mr. fancy eye doctor neurologist guy, you're not helping. "I'm the one who never goes to doctors, remember?" I said to him. "I have no idea how to navigate the health care system." And I never wanted to have to learn. I was kind of hoping I'd just live to a disease-free moderately mature oldish age and then one day just keel over suddenly, never having darkened the door of a doctor's office my whole life long. I have a horror of doctors. So naturally and of course it is now my karma to have to be seeing more doctors than you can shake a stick at. He realized how clueless I am. He gave me explicit directions to the MRI office in the gargantuan building across the street, thank you, that's what I was asking for. So I put on my little temporary celluloid sunglasses to protect my eyedrop-induced dilated pupils from the overcast daylight, walked into the gargantuan building across the street, and made two appointments for the two MRI's. I made one appointment for a Saturday and one for 6:45 a.m on Yom Kippur morning. I always take Yom Kippur off from work, but I don't go to synagogue anymore, so that was perfect. I can quietly go and get my brain scanned and nobody at work will know about it. It's bad enough I couldn't think up a good enough excuse to get today off when we're already short-staffed, so I told the truth and said I had to go in for a doctor's appointment. I didn't say why I had to see the doctor though, and it's nice that they're not allowed to ask. I had to sign a Hippo form (honestly, that's what I thought she said) - the one about who, other than doctors, they are allowed to share my medical information with - and it was lovely to check off the box labeled "Nobody". No spouse, no child, no other person. I authorize NOBODY to know about this. Yes! I decided long ago that if I ever got a serious illness I would try to keep it a secret. Lo and behold, now's my opportunity. Lucky me. I have lots of reasons for not wanting anybody to know. And I do mean not anybody. Not my parents, not my siblings, not my friends. I don't want to burden the people closest to me with a terrible knowledge they can't do anything about. I don't want to find myself talking about it all the time, or at all for that matter. I don't want people treating me differently or feeling sorry for me. I don't want to find my conversation suddenly taken over by the subjects of doctors, treatments, symptoms, diagnoses, insurance, etc. etc. etc. And I don't want to find myself getting all self-absorbed and dramatic, as I've seen some people do. I would just rather not let anybody know.

On the other hand I do feel a need to tell somebody, to talk about it a little bit, just to get it off my chest because it is a little too sharp to entirely hold inside in silence. Like letting out a burp.

So, here we are. God bless the Internet. I can talk about it to total strangers and nobody gets hurt. Now I've told you, and I feel much better. Thanks for listening.

I'll be back with my inspirational words of wisdom when I think of some.