Expendable Organ

Hope

It's hard to fall asleep.  I don't mope or cry, I see friends, I research things to eat after surgery, and ways to take care of myself and feel well, but when I get into bed and relax a bit, I think "Holy shit.  My stomach."

Usually, in the wee hours, I give up on sleeping and pick up the handheld computer next to my bed, and type something into Google like [gastrectomy diet -bypass] or [gastrectomy "quality of life"].  What I desperately want is someone my age, to whom "quality of life" means something I would recognize, to say "Hey, I did this, and your life won't necessarily suck."

Last night, I was reading messages in a gastrectomy support group, and suddenly there it was: a woman, almost exactly my age, found cells by accident, stomach removed--she sounds smart, and at least well enough to be leaving messages on the internet.

It feels intrusive to email a stranger about a trauma, but, like I say, the world is more full of love and caring than you'd ever guess.  She responded, and responded, and responded to my questions.  She put me in touch with a doctor who's an expert in this type of cancer, and most best of all, she sounds like she's truly thriving: she works, she goes to school, she's married, she travels, and she swims!  Mercifull god, she swims!  I'd been too terrified to even ask my doctors whether I'd be able to swim after the surgery; I couldn't stand to hear the answer.

Of course, she also told me that everyone's experience is different, and some people have a much harder time than others, and that, even in the best of cases, it's a long and brutal road back to normal life.  But it is possible.  More than anything I'd read, or anything anyone had said, the simple fact of her existence, and her extraordinary generosity in giving me a peek into it, made me feel like things might eventually be ok.  Thank you.

Update

I know people are reading, and concerned, so though I had posts planned, let me jump to the present day (June 6) and total confusion.  I've had two endoscopies with biopsies that were read as what's known as signet-ring cell stomach cancer.  The second of those readings (with more extensive biopsies) was confirmed by the University of Chicago.  But no one is going take out a stomach based on what amounts to one thorough endoscopy.  So the University of Chicago did their own, third, endoscopy with biopsies and ultrasound (signet-ring cancer often causes a thickening of the stomach wall).  Today, the U of C surgeon called and said, "These are preliminary results and we won't have our multi-disciplinary meeting where we present your case until next Tuesday, but based on what we know so far, we don't think you have stomach cancer."

I think it was the first time in human history that someone heard that and answered "I was afraid you'd say that."  Lemme explain: diffuse gastric cancer, which is what I might have, is often missed by endoscopic biopsies.  It doesn't grow in a tumor, but in little clumps of cells, either on the inside of the stomach, or in the sub-layers of the stomach wall.  It's not really surprising that one, or even five endoscopies would miss it.  So endoscopies that don't find cancer don't get me off the hook; what needs to happen is for someone to look at the slides that were read as signet-ring cells and say "Oh, those look like signet-ring cells, but in fact they're something else."  That hasn't happened yet, and now begins the third major search: for a pathologist or group who specializes in diffuse gastric cancer.  Clearly, this isn't bad news, but if I do have a cancer that just wasn't detected the third time, I'm not thrilled about leaving it in me.  But surgery is postponed for the moment (it might have happened as early as next week), and I might actually go elsewhere to be examined.

The sympathetic oncologist says: "This is the first lesson: you're not in control."

Saved

The University of Chicago multidisciplinary committee met about my "case" and the consensus was that I don't have stomach cancer.  They can't be completely certain, given the original finding, so they want me to do a follow-up in a few months, but they're confident that they won't find anything, and that I'm ok.  Wow.  Shaking.  Explanation later.  Thanks so much to all who called or wrote.

Counsel

Americans apologize for calling, Iranians apologize for not calling enough.  I appreciate both approaches. 

Americans ask questions, Iranians give advice.  USA!  USA!

First, it was people who are in no way doctors calling to tell me whether to have a partial or radical nephrectomy.  (The considerations are: save some kidney if you can, because you just might need it vs. be totally sure that there's no cancer left in your body.)  Unfortunately, there's a raging debate among urologists on just this question, so there really are points on both sides--in fact, visiting surgeons wasn't much different from fielding phone calls, with each person hitting the same talking points .  Here folks, let me, and my several hours of Pubmed research make the decision!  (Partial, for those keeping score.)

I understand what the Iranians are thinking: they don't want me to go astray and harm myself, and there isn't the same emphasis on "respecting autonomy" in Iranian culture, so it doesn't occur to them that they're crossing a boundary, or being meddlesome.  But the excesses of the Iranian approach are hilarious breaches of any culture's norms.  The latest round of advice-giving concerns which surgeon I should have do the surgery, and tonight someone actually said this to me: "Look, Dr. S was a general surgeon, and then became a urologist.  I guarantee you that if the urologist accidentally cuts your aorta, he's just going to put his finger on it until the general surgeon gets there, but Dr. S will take care of it himself!"

Explanation

Everyone told me I had stomach cancer because the original pathology report from my stomach tissue samples said that there were "foci of signet ring adenocarcinoma."  The University of Chicago reviewed those samples and and confirmed "apparent signet ring cells," though it did also note that all the samples were "artifactually distorted."

Those results were really the second time they thought they'd found cancer, since I'd had a previous endoscopy--the one with the "suspicious" cells.  But, with much-appreciated caution, no one was willing to do any surgery until they had confirmed the results themselves.  I had a very thorough endoscopy done at the University of Chicago, which added ultrasound and dye to the regular "white light" endoscopy.  I waited a long week for the results, but they found nothing.  No signet ring cells, no lesions, no thickening of the stomach walls.

But I knew that in diffuse gastric cancer, it wasn't unusual for one endoscopy to simply miss the small clumps of signet ring cells.  What I didn't know were two things: 1) "artifactually distorted" would turn out to be pretty important and 2) there are such things as benign signet ring cells in the stomach.

The University of Chicago decided that, given the distortion in the original slides, and the fact that their own endoscopy showed no signs of cancer at all, "on balance," the evidence suggested that I don't have stomach cancer.  Put that way, it doesn't sound so very convincing, but I had a spy in their multidisciplinary meeting--well, there was someone there with whom I'd spoken in an unofficial capacity, and who could report things to me more informally, without the surpassing caution that has to accompany their official recommendations.  I found out that the debate hadn't been between those recommending a gastrectomy and those favoring a follow-up endoscopy, but between those favoring a follow-up endoscopy and those who wanted to send me home and tell me to forget the whole thing.  The latter group was convinced that the original findings were just a strange anomaly--not a mistake, exactly, but not worth worrying about.  Older, more cautious doctors eventually brought everyone around to the consensus that they couldn't take even the small chance that I do have cancer lightly, so a follow-up is warranted.  But even the doctor I talked to "officially" said "we don't expect to find anything."

A few days after that, I heard from the other cancer center in Chicago, where I've been pursuing the case in parallel.  Their pathologist was a co-author on one of the very few papers which recognizes that not all stomach signet ring cells are malignant, so he's one of the very best people in the world to have looking at apparent signet ring cells in your stomach.  His opinion is that the original slides don't show signet ring cells, but only seem to show them, because of the artifactual distortion (which I take to mean that something happens to the samples when they're collected, or put on slides).  Their multidsciplinary committee made the same recommendation as the U of C: we don't think you have stomach cancer, but you should have a follow-up in a few months, just to be sure.

Though no one can say (either scientifically or legally) that they're 100% sure that I don't have stomach cancer, they've come as close to unfinding the original cancer as they can.  I'm not so unconcerned that I won't be relieved if the follow-up also shows nothing, but this time, nothing is what we all expect.

Labor

A sampling of communications from my employer.

--After I was diagnosed with stomach cancer, and emailed to make arrangements for someone to fill in for me, from one of the firm's owners: "You shouldn't be worrying about work now.  Why don't you call us when you're up to it?"

--After I was undiagnosed with stomach cancer, from the other owner: "The next time you want some time off to visit family in Chicago, a less elaborate excuse is needed."

--From the office manager, a couple of days ago: "Your paid-time-off ran out at the end of May, but we decided to keep paying you anyway."

Worry

I was so happy basking in love that I didn't notice that what feels like love to me is pain for the person I'm feeling it from.  After we heard that I probably don't have stomach cancer, everyone was giddy for a while, then all the people closest to me collapsed, haggard and spent.

I'm allowed to mentally check out, to stop worrying, to be silly or even happy.  That's called resilience.  But the people who love me think that being happy means they're callous, so they guard against it.  Even if worry wanted to leave them, they'd chase after it.  I always have something to do, because being resilient is considered an accomplishment; the people who love me feel like they can only do things at the margins, by listening, bringing food, or hugs.  And if the worst comes to pass, I'll be dead and done with it all, but they'll just have a gaping wound that won't go away.  So they're haggard and spent.

We tease my mom, and tell her she's not tough, because she's not what we think of as stoic--you can see the weight pressing on her, her nerves are frayed, she can't sleep, she doesn't laugh, her hands knead whatever's in them, and sometimes she'll just start to cry.  Of course, we tease her because we can't help her; we wish she'd be ok, but we can't make it happen.

But I realized something about worry when I was the only one who knew about the suspicious stomach cells: it's work that needs to be done.  I don't understand why, and things about "feeling in control" don't quite hit the mark.  Whyever it is, when something's wrong, it demands worry.  When my mom didn't know about the stomach, she wasn't worrying about it, and I was.  It's like an acid that won't be still inside you, slowly singeing as it goes.  But as soon as I told her, she took on the worry, and I relaxed, consoling her, thinking of the best case rather than the worst.  And I realized too that she's been doing the worrying for all of us, embodying the worst that can happen, so that we have some place to go to try to make it better.  We consoled ourselves by consoling her, and let go our worry because we knew she wouldn't let it go unworried.

She bore the worry for all of us, and not just our worry, but her own maternal worry, and her own thoughts of my dad's cancer, and her own cancer from not so many years ago.  So silly that we would tease her, when she was tougher than all of us.  But we don't have good ways of saying "thanks for doing my worrying for me," even when we find out that it's one of the things to be most thankful for.  Maybe teasing is just an acknowledgement, but such a paltry and twisted one.  Another reason to live: to say "thank you"--to everyone, and to my mom.

Date

The Iranian surgeon, who we saw again yesterday, says, "The entire city knows this guy has a little tumor in his kidney," and threatens to make me run stairs the day after my surgery.

I can't resist that, so we're on for July 6th.