February 3, 2003
Thank heavens for the flu
Talk about dumb luck. If it weren't for my 65-year-old husband getting a stomach virus in April of last year, we'd be spending at least the first part of this year in blissful ignorance of the cancer that very likely would have killed him before the end of next year. And maybe just as ignorant of the heart disease that very likely would have killed him well before then. I've never been so grateful to a virus!
I came home from work one night to find Tom not feeling at all well. His stomach was bothering him. However, his stomach had been bothering him for years, and he didn't seem to think it was enough of a problem to demand that his primary care physician check it out. So when he told him he wasn't hungry, I just thought, "Oh, good. I don't have to make dinner."
Callous? Oh, yes! But you know how calluses are developed: constant irritation or pressure to the same spot. I'd thrown up my hands in despair at Tom's GERD (gastroesophageal reflux disorder) years ago. He was in enough discomfort that he spent at least part of every night sleeping in his recliner. He kept bottles of over-the-counter antacids in his nightstand. He talked to his doctor about it, and the doctor prescribed the first of a series of medications. I don't remember now which it was - Pepcid AC, I think.
As time progressed, Tom's condition worsened. However, his doctor did nothing other than change the medication - first Prilosec, then Prevacid. He never ordered any tests, and Tom - being a guy - never made enough of a stink about it to try to force the doctor's hand in the matter.
I, however, being unencumbered by testosterone, did everything I could to rock the boat enough to get the doctor's attention. I sent him two faxes to provide more detailed information about just how much the GERD was affecting Tom's life. (I don't think the term GERD had even been brought up at this point, though.) When that failed, I actually accompanied Tom to a regular check-up (he's also diabetic), figuring I could convince the doctor to get to the root of the problem if I talked to him in person.
I was wrong. I explained my concern that Tom had ulcers, a hiatal hernia, or both. The doc just brushed aside my worry with a blasť explanation that Tom's sleep apnea created a vacuum that pulled stomach contents up into his esophagus. I was not satisfied, but I decided that if Tom didn't mind the discomfort and pain, and his doctor wasn't worried, I'd just quit nagging.
This is not apnea
Fast forward a couple of years to April 2002 and the fortuitous stomach flu. By bedtime, Tom was vomiting pretty hard. Vomiting was not unusual for him, so I just told him, "Good night," and headed upstairs. Quite frankly, I was tired of dealing with what appeared to be just an unusually bad case of reflux.
But at 4:30 the next morning, I was awakened by the sounds of Tom vomiting again, and more forcefully. Now that wasn't normal, so I ran downstairs to discover he was experiencing projectile vomiting. But even worse was the fact that the vomitus was black. It looked like someone had thrown India ink all over the bathroom. I told Tom, "That's it. You don't get to decide anymore. I am calling your doctor."
Fortunately for both of us, Tom had finally switched doctors after my company switched to an insurance carrier that didn't include Dr. Apathy. I reached his new doctor within a matter of minutes, and he advised us to go to the emergency room. Gosh, sounded like a good idea to me! So off we went.
I won't bore you with the details of a Day in the ER. But by late afternoon, Tom had been admitted to the hospital and undergone an endoscopy - also known as an esophagoscopy. A gastroenterologist put a tiny camera down Tom's throat to see where the bleeding was coming from and take some biopsies. And whaddya know? There were a whole bunch of esophageal ulcers! A hiatal hernia! And as a bonus, inflammation of the stomach and discoloration of the duodenum! As one of the nurses put it, Tom's esophagus looked like raw hamburger meat.
Now, I try really hard not to say, "I told you so!" I really do. But I just let him have it as he was coming out from the sedation. I was truly obnoxious, but after all those years of biting my tongue, I just couldn't do it any longer. So by the time the doctor came in, Tom was good and sick of me gloating. (So was I, for that matter.)
As it turned out, Tom had developed a condition called Barrett's esophagus, in which cells from the stomach wash up into the gullet with the acid, and eventually take root in the irritated tissues and start growing. About 5%-10% of GERD sufferers develop Barrett's, and about 5%-10% of those who develop Barrett's eventually develop cancer. But Tom's biopsies came back negative, and we breathed a huge sigh of relief. We left the hospital with yet another medication (Nexium this time), a low-acid diet to get the esophagus to heal up, and advice to eat several small meals a day to keep from overfilling the stomach at one time.
A humbler, quieter Tom started taking more responsibility for his own health. He was very faithful to the new regimen; his experiences in the ER were painful enough that he didn't want to repeat them again. So we went back for a follow-up endoscopy hoping that there would be significant improvement.
And there was! The ulcers were almost healed; the inflammation was gone. The doctor was very pleased with Tom's progress. He said he'd taken another biopsy, but that everything looked good, and that we should have the Barrett's checked again in a couple of years. We had dodged the bullet - we thought.
Never mind ?
The next day, Tom got a call from the same doctor. This biopsy - taken with a much clearer view of the tissue now all that inflammation was gone - was positive: signet cell adenocarcinoma. Tom called me at work to tell me, and I went into some kind of altered state right away. My dad had died of colon cancer 15 years before; I knew what cancer meant.
For the next week, I spent hours every night researching esophageal cancer on the Internet. My findings left me in tears. EC is relatively unusual, but it is also unusually lethal. The most recent statistics indicate an 85% mortality rate. It is the fastest-growing kind of cancer in the United States (it is much more common in some other countries). There are actually two kinds of EC: adeno (as Tom had) and squamous cell.
Risk factors include being male (men get EC two to three times more often than women); being black; being a smoker and/or a drinker (more directly related to squamous cell EC); and suffering from GERD (more related to adeno). About the only risk factor Tom didn't have was his race, although he had quit smoking when he met me 13 years ago (I can't tolerate tobacco smoke) and had essentially quit drinking when he was diagnosed with diabetes several years later.
Like ovarian cancer and colon cancer, EC is usually symptom-free until it's too late. But here's where we got lucky: Because of that stupid stomach flu, we had found Tom's cancer much earlier than usual: Stage IIa instead of the all-too-common Stage IV.
So here we are at the start of 2003. Since Tom's diagnosis in May of last year, he has undergone a quadruple bypass for heart disease discovered in the course of testing him for his ability to withstand cancer treatment. He flunked the stress test, then flunked the angiogram a few days later. He had between 85% and 95% blockage in all major arteries going to his heart. It's a minor miracle he hadn't dropped dead already.
One month and 10 days after the heart operation, Tom started six weeks of concurrent chemotherapy and radiation. Five and a half weeks following the last radiation treatment, he had an esophagectomy. The surgeons make two large incisions - one from the sternum to the navel and one curving all the way around his right shoulder blade - that allowed them to remove the esophagus, the top part of his stomach and some lymph nodes, and pull the rest of Tom's stomach up through his diaphragm to form a new esophagus and stomach, which is now located in Tom's chest. It's called an Ivor-Lewis procedure, and depending on whom you talk to, it's either the most invasive surgery performed, or the second most invasive after transplants. Between the I-L and the bypass, Tom looks like he has had a zipper installed the length of his torso - and taken some bullets and stab wounds, too.
Once Tom healed up sufficiently from the esophagectomy, he started another six weeks of chemo. As I write this, he has only one infusion left, and it can't happen soon enough for him. He is exhausted by the chemo, of course, and he's just plain ready to start healing up once and for all.
Counting our blessings
The good news here is that it looks like he really will be healing up once and for all. He bounced back from surgery beautifully. The pathologist could find "no living cancer cells" anywhere in the considerable amount of tissue removed during Tom's esophagectomy. It looks now like we've got the coveted "complete response" to treatment. It looks now like we've beaten the cancer.
I know, I know. Once you've had cancer, you can never be really sure it won't come back. Just this week, I heard of another case of complete response to treatment for EC who now has secondary tumors riddling his skeletal system. That shook me badly. There is no safe haven from this disease. EC is especially sneaky, and because it's so unusual, there isn't even a standard protocol for treating it.
Tom is learning to deal with his new plumbing. He can't eat as much as before, and he's lost about 28 lb. since this all started. If he does eat too much, he pays for it with several hours of pretty bad discomfort. But he can eat just about anything he wants; many post-esophagectomy patients have to wait for months before they can resume anything close to normal diets.
So far, Tom hasn't needed to have his new esophagus dilated to open up strictures caused by scar tissue. About one-third of esophagectomy patients face that - in many cases, multiple times annually for years. He had no leakage at the anastomosis - the point in the throat at which the new esophagus is attached to the stump of the old one. He had no infections, and he only needed supplemental feeding for a week through a j-tube; liquid nutrition was administered through a tube inserted directly into the small intestine.
Thanks for sticking with me this far. But please do me a favor, too. If you or someone you love suffers from chronic GERD, insist on an endoscopy to rule out Barrett's esophagus. If Barrett's is present, it should be monitored by regular endoscopies and biopsies. As with every other kind of cancer, catching EC early is critical to curing it. If your doctor seems indifferent to a problem, find a new doctor!
There is more information about EC at http://www.ecaware.org/ or http://www.eccafe.org/. There also are stories of other EC patients on both sites. Not all of them have happy endings. And most of them have had much more difficult journeys than we've had. Thanks to that stomach flu, we discovered the EC and - just as important - the heart disease. I don't know whether it was just dumb luck or God tapping us on the shoulder, but I repeat: I've never been so grateful to a virus.