Abdominatrix

Sorry about the delay on this major posting, but I wanted to sit down with Emma and tell her what was going on first, but before that I had to wait for the 7pm shift change, which happened around 7:45.

The surgical res. made her final pass for the day at around 6pm, and I told her that I was expecting a report from pathology and if I couldn't have the report now, I wanted to know why. So she looked things up on the network, and of course the lab work had been done for who knows how long. What bugs me most is that the news is actually as good as we could possibly have hoped for, and for some reason they wanted to keep us hanging on the line for it. . .I'm guessing since the news is good, it didn't seem so urgent to them, and they couldn't see why it might be urgent to us. . .go fig.

So here's what we've got: Ancient as this tumor is it is still Grade 1, which indicates the lowest malignancy, and it has not metastisized. While the tumor has some sclerosing features (and someone. . .prolly Peggy will need to explain this bit to us) they did not find the density that they believed they would in examining the CT scans, and this would have been bad, or at least worse, but I'm not sure I'll understand why until our consult with the medical oncologist.

The surgeons believe that the radiation oncologist will have no further interest in our case at this point since they got the whole mass and there's nothing left to shoot at.

They're not really willing to speculate officially on what the medical oncologist will say beyond, "this is the sort of thing they often choose not to go at with chemo, but monitor carefully, instead." So we'll have to wait and see there.

And as the radiation guy told us last week (though it feels like a year ago), regardless of how we go at this there's a 50/50 chance of recurrence even if we get the whole thing out. And as the surgeon said at our first consult, He's taken these things out of people and never seen them again, and he's taken them out of people and seen them again two, three, four, five, six times.

I mentioned that I don't want to be too laid back about how we approach this since I'm fine living with a one kidneyed partner, but imagine if this thing comes back and tries to take her other kidney, we could be in a whole new world of screw. But they say that even if it recurs, it's likely to recur from the same site as the first instance, which was in the area of the kidney they removed, so with vigilance (and a signficantly better family physician and monitoring team), we should be able to intercept future occurrences before they endanger any other organs.

And now what you've all been waiting for. The final and official data on the mass (did you know that "tumor" has always been one of my least favorite words, now even moreso):

Dimensions: 41x31x13cm or approx. 16"x12"x5"
Weight: 7.2 kg or approx 15.9 pounds

At this point I'd like to point something out (and I'm sorry that this is getting long, but it needs to be said). So far dozens of people friends, family, nurses, docs, techs, everyone has said things to us like this:

"And you had no idea that something was wrong with you?"

Which makes me want to bash them with a 17 pound tumor, so I'm going to tell our story as an object lesson for eveyone who trusts his or her family physician.

About four or five years ago, Sherri began complaining of chronic, acute sacroiliac pain and fatigue. She went to her doc who first thought she might have had rheumatoid arthritis, but then settled on the diagnosis of fibromyalgia. They started to work out a medical regimen to deal with her fatigue, joint pain, and sleep disturbances, and things got better for a while, except for the fatigue which kept worsening.

Around two years ago Sherri began to complain of stomach discomfort, cramping, hardness in her stomach and discomfort every time she at a normal sized meal. The doc chalked it up to reflux, nervous stomach, stress, etc. About fourteen months ago, the doc ordered an ultrasound of her gall-bladder, which was negative for gallstones. And he decided not to pursue anything else.

During this same time, Sherri was disturbed to find that she was gaining weight in her stomach in ways that she never had before. She has spent the last year aggressively dieting with no success. So she went to the doc to find out what was going on. In the past when she put on weight, she had always put it on evenly, no matter how much weight she put on. "Why," she asked, "Am I suddenly putting all this weight on my stomach?"

The Doc told her, "Look, you're a busy 38-40 year-old-woman. You have a high stress job, are raising a child, and also in a graduate program. Of course you're tired." As for the strange weight gain, the doc explained this by saying that as we age, our bodies change too; we sometimes start to gain weight in different ways. He also told her that some of her fibromyalgia meds were certainly helping her put on weight. "All really pretty normal," he told her.

So yeah, we had a pretty damned good idea that something was wrong. The only problem was that we had put our trust in a physician who should have been more proactive about seeking answers more agressively. We made the mistake of assuming our doc was competent, and we believed what he told us.

Of course if we had to do it all again, we would seek a second opinion, but when you're 38 and you're body's doing weird shit, do you really say to yourself, "Hey, I wonder if I might have cancer?" Or do you do what Sherri did for two years: Beat yourself up because your body is going to hell and you feel like it's something you're doing or not doing, which is causing the problem? Because let's face it. . .this story is not one you ever expect yourself to be in the middle of.

Anyway, this is where we have to thank Susan Engeleiter, president of DRC, the company Sherri works for. You see, this cancer kills one of two ways: It spreads to the lungs or liver or it gets so big that it disables a vital organ before you realize what's happening, and one morning you wake up dead. If DRC hadn't sent Sherri to the Mayo for a physical, who knows what might have happened.

Sorry if this good news post has turned into a rant, but it's late, and I haven't slept much this week. . .those of you who don't know me well, please blame the sleep deprivation, and those of you who know me well, just say it: "There he goes again."

Sorry for all of the colons in this post: Very pretentious, I know. . . sleep deprivation.

GW