Wednesday, July 23, 2014

Fellow Travelers

It's been a while since I updated, and I always feel bad when I go a long time between posts; I feel that if people are going to be kind enough to travel along on my cancer journey, the least I owe them is to call out the signposts as we pass.

The latest signpost was very encouraging. It's been twenty months since I spent five days in the hospital, with a radioactive plaque behind my eye, aiming its angry vibes at the tumor. Initially, everything was progressing just as it was supposed to. The tumor was shrinking as fast as the doctor could have hoped. Eventually, the rate of shrinkage slowed, but that was expected. Then came the scary day in the spring of this year when it looked like maybe, just maybe, the tumor had grown a minuscule amount.

I had to wait six weeks before it could be checked again. Mercifully, the news at that time was good. The tumor was back on the regression track the doctor would have expected, and he couldn't say for sure why it had looked bigger at the previous appointment. It did not actually occur to me that the tumor shrinking at the later appointment could have been the fluke, and not the apparent earlier growth.

It must have occurred to Dr. M., though. When I saw him Tuesday, there was unmistakable tumor shrinkage. He actually said, "I'm thrilled." When I said, "Were you worried?" he responded, "I'm not going to answer that." Which led to my inquiry about the likelihood of a recurrence of the cancer in my eye--something I had never asked before. He said that he couldn't say the likelihood was zero, but that it was low, perhaps five percent or less. He also said that the longer I go without a recurrence, the less likely one is. (Sadly, that is not true of metastasis--with this particular disease, mets show up any time they damn please. And then they trash the joint.)

The other good news is that the fluid buildup in my eye as a side effect of the radiation has gone down dramatically, thanks to the injections I've been getting in my eyeball. So we're going to keep doing the injections, but not as often, which is nice, because there's a reason for the expression, "It's better than a sharp stick in the eye." And I don't have to go for another checkup for six months, which is the longest I've gone. It makes me feel happy, and also a little nervous. Like roller skating without holding onto the wall.

The whole appointment, from vision test to pressure check to eyeball photos to eyeball ultrasounds to consult with Dr. M. to eyeball injections took longer than usual--about five hours. Ordinarily, I'd while away the hours in a doctor's office reading, but that's a bit of a challenge with your eyes dilated. So I wound  up talking to people. Like a mom I met in the ladies' room who was refreshing her mascara. It had gotten smeared when her eyes had teared up. Not from eye drops--she wasn't the patient. Her nine year old daughter is. She has ocular melanoma and another kind of eye cancer so rare that fewer than thirty people in the country have it.

"Is Dr. M. good?" she asked me. "The best," I assured her. I asked if I could put her daughter's name on my prayer list. She agreed, and put me on hers. I wanted to hug her before we left the ladies' room, but I didn't want her to start crying again.

These are my fellow travelers, too.

Tuesday, April 29, 2014

Scanxiety

So, it's that time again.

Tomorrow, I head up to Durham for my biennial labs, CT scan and meeting with the oncologist. I have no reason to believe that anything's wrong, and the odds are that everything's all right, but still.

I'm remembering the last appointment, when the oncologist's perky new assistant said, "Preliminarily, everything looks okay, but the radiologist hasn't reviewed the scan yet, so we'll call you tomorrow if anything's wrong."

Then she called me the next day.

And talked for about thirty seconds before she got to the buried lead: no evidence of cancer. I had to have her go back and repeat what she had said before that, because I had been so paralyzed by fear, since she said she would call if anything was wrong, and here she was calling and talking about low-attenuation lesions. What the hell are low-attenuation lesions? I will tell you: they are boring cysts which mostly go away on their own (and did). But I did not know this at the time, because I am not a medical person, and lesions sound like disease to me.

So after Count Perkula finished assuring me that the cysts were no big deal, and that there was no evidence of cancer, I allowed as how she was new at her job and so she might not know this yet, but most people who have scans to see if their cancer has returned to kill them would like to know the very first thing that everything's okay. In other words, do not bury the fucking lead. I did not intimate to her that if she ever pulled that crap again I would become her life-threatening condition.. But only because I was too shaken at the time to form threats. Or, you know, coherent thoughts.

And now here we are again. I've done a really good job of containing my anxiety until now, but the workday is done and my appointment is tomorrow, and I am scared that this is my last night of being an ordinary crabby housewife, mother and writer, and that tomorrow night will be my first night of being terminally ill.

It probably won't. But it could.

One of my friends once posted a rallying cry on Facebook for her "prayer worriers," and I wondered what that was for a moment until I realized it had probably autocorrected from "prayer warriors." And then it hit me. I don't think my poor, thin little prayers qualify me as a warrior. But prayer worrier? I am all over that.

Whichever category you fit into, I'd appreciate your prayers for a good outcome tomorrow. I'll let you know how it goes.

Thursday, April 3, 2014

Of Two Minds

It occurs to me since my post last week that many people think I'm closer to death than we have any reason to believe I am in fact. I can tell because some brave folks actually come up to me, hug me, and ask what they can do for me, instead of just gazing dolefully at me from a distance with Sad Cancer Eyes. I want to clear a few things up so that people neither think I'm being attention-seeking (more than usual) nor that they need to organize me a spaghetti dinner fundraiser.

Thing #1: The tumor may have grown a little bit, but then again, it may not have. 
When I pressed Dr. M. for details, he said the increase in tumor height appeared to be 0.1-0.2 mm. That could represent something other than active tumor growth, like a measurement error or non-cancery swelling.

Thing #2: If the tumor has grown, there are treatment options.
The most likely first option would be transpupillary thermotherapy, or a laser beam aimed into my eye to incinerate the tumor growth. This is an outpatient procedure. I would not especially enjoy having to have it, but it would make me feel a little badass, so there's that.

Thing #3: You can still feel a little sorry for me if you want, because I will probably have to have a needle full of expensive cancer drug injected DIRECTLY INTO MY EYEBALL.
That would also make me feel a little badass, but it's expensive medicine, and, hello, NEEDLE IN EYE. Also with upsetting, and non-glamorous side effects. If it made my eye glow, that would be cool.

Thing #4: Even if the tumor has grown, it doesn't necessarily affect my chances of metastasis, which are based on the genetic makeup of the tumor.
This is according to Dr. M. He said this development does not increase the chances of metastasis, which are roughly 21%. So, if you want to believe someone who's been practicing medicine at a world-renowned hospital for less than two decades instead of someone who's been an experienced hypochondriac all her life, you go with that.

Thing #5: I'm still going to talk about death and grief and anxiety and fear up in here, because 21% > 0%.
It's just how I process things. While the chance of death from metastasis of this tumor is about 21%, the chance of death from life is 100%, so I'd be foolish to ignore it entirely. I am, necessarily, of two minds. It is likely that I still have a good bit of life ahead of me, I must live it, or else I waste however long I have. But there also exists a reasonable possibility my life will be significantly shortened, and if I ignore that, I risk avoiding the planning and processing that will make things easier and better for me and my family.  I'll be doing some of that pondering in this space, so if it freaks you out, I'll understand if you don't want to read it. If it makes you feel any better, I wish I didn't have to write it.

Tuesday, April 1, 2014

How I Met My Favorite TV Show (and How it Broke My Heart)

Back in November of 2012, when I had my five-day inpatient radiation for my ocular melanoma, there wasn't a lot I could do for entertainment. I couldn't have visitors for very long for fear I'd irradiate them. I could and did read with my good eye, but you can't do that all day, every day. So I went for the occasional stroll around the unit with the rest of my eye patch posse, and I watched a lot of TV. In the process, I discovered two shows I'd heard a lot about but never seen before: The Big Bang Theory and How I Met Your Mother. I fell in love with Big Bang because I love me some quirky smart boys. But I grew to love HIMYM even more.

Part of it was that the gang on the show seemed to get along so well, you wanted to be friends with them, too, to be in on the inside jokes, to have a special bar and a special booth and people waiting for you there who just got you. But as I realized some little while later, the show also appealed to me for a different reason.

At that point in time, so much in my life was uncertain. I didn't know if the radiation would shrink the tumor. I didn't know if my vision would return. I had no idea what lay ahead. And here was this TV show from the future. No matter what happened in the episode I was watching, whether Ted had a horrible blind date or got left at the altar, I knew things would turn out okay for him. Because the episode was being told from the vantage point of Ted in 2030, speaking to his children. Who could not exist if he hadn't met "The One" and gotten his happy ending. So as I lay there in my hospital bed, surrounded by scratchy, wadded-up hospital tissues and my uncertainties, I knew one thing Ted didn't while he looked for love: everything was going to be just fine in the end. When I got out of the hospital, I watched reruns of the show on my lunch hour until I'd seen them all. Every Monday I waited eagerly for the next new episode. And I clung to the certainty of that happy ending like a life raft.

Here's the thing about life rafts: there's never room for everybody to fit on them.

(In case your TV and internet are broken except for the eye tumor channel,  here's your spoiler alert.)

The Mother is dead, of some unspecified "sickness." She's been dead for years. Ted got ten wonderful years and two beautiful kids with her. But then she died. And it looks like Ted finds happiness again, with his children's encouragement, with the girl he fell in love with in the first episode of the show. They didn't work then. But time moves on, and people and circumstances change. So now, maybe they do.

I'm not going to lie to you: I was not pleased last night when I watched the series finale, even though I predicted something fairly close to this. But I was hoping for a sitcom happy ending: Marshall and Lily stay happy, and so do Barney and Robin. Ted meets Tracey, the Mother, and they stay happy too, and everyone is happy together.

That's how it works in sitcoms. But that is not how it works in life. So the writers of the show did something brave. Everyone in the show got their happily ever after, even if for most of them, it didn't look like they imagined. But they did not get their perfectly ever after. Because in life, really, who ever does?

I don't attach any predictive value to what happened in the show as regards my own situation. I might die, because cancer. Also, I might not. But the show gave me faith in happy endings when I needed it. And when I needed to be reminded that happy doesn't equal easy or trouble-free, it gave me that, too.

Friday, March 28, 2014

On a Lighter Note...

Almost exactly six years ago, I traveled to Pittsburgh to meet with two wonderful women, Cooper and Emily, who founded a website for which I was working. One of the other editors for the site was at the meeting as well, and like me, she received a bag of gifts upon her arrival--a nice surprise. There were lots of cool things, but I remember two in particular.

One was a pair of silver ballet slippers, custom decorated with handwritten words about me, so that every time I looked down at my feet, I would be reminded that I was funny and creative and brilliant. Despite the fact that I have a hard time picking out shoes for myself, these shoes that were surreptitiously bought and created for me fit perfectly. I called them my princess shoes and wore them constantly until they started to show signs of wear. I now reserve them for state occasions, royal weddings, that sort of thing.

The second thing I remember was a book co-written by Emily and two friends of hers, called "Living with the End in Mind." Even though I realized that the book was a labor of love for Emily (one of her co-authors was a beloved friend who died of breast cancer), I have to admit it felt a little weird to receive it. I felt like Pollyanna, who was hoping to receive a doll for Christmas, only to get a pair of crutches instead. As Pollyanna did with her crutches, I tucked my book away in case it should be needed. Unlike Pollyanna, I was not as cheerful when I discovered it was.

However, it's a great book. At least I think so, because I can only bear to read it for about twelve seconds at a time. But every time I pick it up, I randomly flip it open to a page that is helpful right at that very minute. And now I wish I had read it earlier when it didn't seem so fraught. But no matter. It is a good book, it reminds me of the person who gave it to me, and it is giving me what I need as I need it.

In a somewhat bizarre twist, both I and the other friend who were given the book were diagnosed with cancer within a few years of receiving it. So I would like to propose that Emily's next book be titled, "How to Manage Your Lottery Winnings and Still Have Time for a Daily Massage." I promise, I'll be first in line at the book signing.

Thursday, March 27, 2014

The Universe Delivers

Sometimes the universe delivers exactly what you need to hear. Or, more likely, it was always there, but you managed to wiggle the knob on the old radio in your head just so the station comes in, maybe a little staticky, but well enough to hear.

Yesterday I heard two references to grief that were so spot on. The first, an author discussing her book and talking about "the cue-ball break of grief, where everyone goes into their own pocket," was so true, because grief, no matter if shared, is still so private and must be dealt with in one's own way. And this, from Anne Lamott: "The only cure for grief is grieving."

For reasons passing understanding, yesterday I realized that I have cancer, and that it might kill me. I know it might not, and that most of you would prefer that I hang on to that. But it might, it really might. There's a decent chance that this is not a drill, though it's too early to tell. And so what I am grieving right now is not my life or my general good health, both of which I still have, but the ability to take those things for granted.

Up until now, even after my doctor appointment a month ago, I have kept the cancer in a box. I have had lots of work to do, and other obligations, and I have just dealt with them and been grateful for them. But yesterday all hell broke loose.

I called the social worker at the Eye Center, who is a lovely woman and who did not try to jolly me out of the realization that I might die far earlier than I would prefer. On the other hand, I'm not ready to pick out my shroud yet, and she was a little too willing to browse the aisles at Shrouds R Us with me. So that conversation lasted a couple minutes longer than I needed.

My husband called me from work as he often does, to check in and to make sure I haven't gone too batty from sitting at a keyboard alone all day, like Jack Nicholson in the Shining. He heard something weird in my voice, darling fella that he is, and I told him that I was scared and that I need to be able to acknowledge that with him because he is my person. That I did not want to freak him out or make him think I was conceding defeat, but that I need to acknowledge reality and take care of some of what the funeral people call "pre-planning." I asked if he thought I should get a plot for just myself or if we should pick out a doublewide, generously allowing as how his next wife might not want him shacking up with me after death. He quietly said, "There's not going to be a next wife." (Total lie, BTW, he's such a catch the ladies will be lining up on the porch with casseroles before I'm cold. He's not going to have a chance against that, but that will be his problem.) "Doublewide it is," I said grimly.

I really do hope all this is irrelevant for decades, but I so appreciated his willingness to neither give up on my life nor ignore the prospect of my death. I hate it SO MUCH when people say to "stay strong," because what it means is, "I have no idea what to do with your weakness, so please hide it." He doesn't ask that of me, which is one reason he's such a catch. He lets me grieve, so I have the chance to be happy again, for as long as I have. And I hope it's a really long time.

Saturday, March 1, 2014

Mr. Kobayashi's Mailbox

So, the part that I left out of the last post is that I almost killed myself after the bad news from Tuesday's doctor appointment.

No, not on purpose. That is NOT how we roll.

How we do roll, however, is down the highway for an hour, with tears streaming down our face the whole time. After a night of fitful sleep, and half an antianxiety pill taken because we had to go to the doctor appointment alone.

Accordingly, I fell asleep at the wheel.

Not, mercifully, on the highway or a main road. Somewhat embarrassingly, I fell asleep at the wheel of my husband's brand new car around the corner from my house. Within easy walking distance.

I remember feeling like I might like to relax for a bit when I got home. I don't remember feeling especially sleepy. I very vividly remember jerking awake as my vehicle drifted to the right, and swerving rapidly to the left. Mercifully (again), I did not make contact with any cars, humans, strollers, or animals.

What I did make contact with, because I swerved a split-second too late, was Mr. Kobayashi's mailbox.

The mailbox, with mail still inside, landed squarely in the middle of Mr. Kobayashi's tidy lawn. I stopped my car, inspected it for damage (of which there was, thankfully, very little), and turned around, pulling into the driveway of the house with an intact mailbox post, but no mailbox. I had no idea whose house it was, but there was a truck in the driveway, so picked up the mailbox in my arms like it was a baby, and knocked.

It took him a while to get to the door, almost long enough for me to give up, except I didn't give up because I had an armload full of mailbox and no idea what to do with it. So I stood there until the door opened.

Which it eventually did, to reveal an older Japanese man who spoke English, but obviously not as a first language.

I do not know why Mr. Kobayashi came to this country, or when, or what he expected when he did. But I am certain it was not for an incoherent middle-aged woman to ring his doorbell, weeping hysterically, and bearing his deceased mailbox like a temple sacrifice.

At the moment in question, neither of us had an excellent command of the English language, so he kept asking if I was okay, and I kept saying yes (um, obvious lie, but the truth was too complicated). I kept apologizing and said I would get him a new mailbox. He said he would attach it to the post. He asked again if I was okay. I said yes again. We exchanged names and phone numbers like it was a normal traffic accident, with, you know, a normal driver.

The car, miraculously, had only a crack in the casing of the side mirror and some white paint on the door handle. I drove it home and called my husband to ask if, on the way home from work, he would mind picking up a standard white mailbox for me. And then, I explained why I needed it.

To the man's credit, he did not once ask about the condition of his vehicle. (Although, being a good engineer, he did want more specs on the mailbox.)

The next morning, I somewhat sheepishly carried the new mailbox over to Mr. Kobayashi's house. He opened the door a little quicker this time, obviously cheered by the fact that I no longer appeared to be a recently furloughed patient from the state hospital. He bowed repeatedly, smiling and saying, "I'm glad you're okay!" He accepted the new mailbox as if it were a surprise gift that turned out to be exactly what he had wanted all along. 

Now, this is the time of year when my people are thinking more than usual about forgiveness--asking for it and giving it. This story involves two men who had every right to be angry with me, because I broke their stuff, and could have broken it much worse. But neither one of them so much as betrayed a moment's irritation. Only concern for my well-being. I didn't even have to ask for forgiveness. It was just there.

And perhaps this is the best part of the story, aside from the fact that I didn't plow into a tree or another car: just when angry, grouchy, pinched-up little me could use an earthly model for how to forgive, I actually get two.