Anniversaries

This blog was a project that focused primarily on the first few months of my diagnosis and surgery. I last left off with the discovery almost a year after the surgery that a simple dilation procedure could transform my swallowing from a struggle to virtual normalcy.

It has now been almost four years. Late Summer is the start of an annual ritual of anniversaries and reflections. I don't think there has been a single day that I haven't told myself "I had cancer." Maybe I'll eventually get over it.

The first of these "anniversaries" was my initial colonoscopy and upper endoscopy, which happened in July four years ago. Fortunately, I didn't put the procedure off, as many do. I don't think the progression of early stage esophageal cancer is well understood, so there isn't a sense of how quickly it advances, but it is known to be an aggressive cancer. My surgeon said early detection probably saved my life. I can't help but occasionally think about the what-ifs.

The discovery of my cancer didn't happen with the first examination, but rather the follow-up a couple of months later. I, like so many men of my age, had GERD, resulting in erosive esophagitis, and ultimately Barrett's Esophagus. These are not guarantees of cancer, but they seem to be a breeding ground for the unlucky. Although statistically rare, esophageal cancer has been on the rise – approximately by 2% per year in white males. I suspect this is because of our diet and life style. I'm proud to say that my experience has convinced a handful of other men to get checked – fortunately, none uncovered cancer. The secret to survival is early detection: I'm the poster child for that.

The follow-up upper endoscopy turned up a suspicious, but tiny 1 mm spot. That resulted in a quick call to rush back to the hospital to get comprehensive biopsy. This was the start of a period of anxiety, as each step was a new experience that had the potential for more bad news. The next big anniversary was the formal diagnosis, which happened in October. It was followed by a flurry of tests and consultations, including an ultrasound endoscopy and a PET scan, both to try and determine the degree of invasion. All of the evidence suggested the most miniscule of spots – cancer in situ, not even a tumor, leading to renewed hope on my behalf that "it isn't that bad." The Cleveland Clinic confirmed that it was really cancer, the nasty variety, and I was simply stunned to learn that the recommended course was extreme: to remove the entire esophagus, not just effected area and a small margin.

The actual discussion of the diagnosis and recommended treatment remains a little hazy in my memory and possibly a permanent trauma: I was was in shock, even after weeks of considering the likelihood. I remember Dr. Lee trying to convey the scope of the surgery, that was very serious and that I didn't want to have just anyone doing it, and that I needed to hurry up and find someone. I couldn't believe that such a small spot, caught so early, would require such an invasive procedure. It wasn't fair!

I know that even many whose cancer is more advanced than mine balk at such extreme measures. Every specialist told me the same thing: very bad cancer, don't mess with it!

I was especially fortunate, as the surgery was devoid of any complications or extremes. I have returned to a normal life.  I work a little harder at swallowing, I eat almost everything I used to. I can't eat as much as I used to, but that is a good thing. I'll take stomach acid reducers the rest of my life.

The biggest challenge has resulted from dumping syndrome. The surgery introduces a cascade of cause-and-effects. It is difficult to not cut the Vagus nerve, which runs along the esophagus, particularly in a relatively long and complicated surgery. Since the Vagus nerve controls the pyloric sphincter, that needs to be opened up permanently, or food simply sits in the stomach. As a result, the now vertically aligned and reduced stomach has a direct opening at the bottom into the duodenum. Food tends to pass through too quickly on to the jejunum, especially when I'm not careful, where they have a party. The result can be not only cramping, sometimes quite severe, but also impaired nutrient absorption. I now take daily iron supplements because iron tends to not get absorbed.  Even worse is "late dumping," which results in shakes and sweats about three hours later. If I had half a brain, I would always eat right, thereby avoiding both dumping and its side effects.

Of course, the big anniversary happens the first week of December, when I had the surgery. It has been long enough that the details and perhaps associated trauma are eluding me. I keep telling myself I'm one lucky guy: I sure dodged that bullet!

A Year Later

A year after my surgery people say—usually with surprise—that I look really great. By "great," they really mean that there is nothing to suggest I went through such an ordeal: there are no outward signs of trauma and my weight is as close to perfect as probably one could hope for. I proudly tell people I'm "the poster child" for transhiatal esophagectomies. I find myself often telling myself, "that wasn't so bad": I had no significant pain throughout, no complications, and not nearly the disruption to my life that I expected, or was lead to expect. People are often surprised when they learn I can eat essentially anything and have no physical limitations. It wasn't so bad and I would encourage others facing this surgery to worry about other things.

My eating has changed: I eat much less at any given time. This is a good thing, but I find people are often a little put off: "is that all you are going to eat?" We like to share in our gluttony. Unfortunately for me, there is a rather sudden line between enough and too much. Crossing that line still leaves me vulnerable to gastric dumping syndrome that is unpleasant enough, but which I have recently learned signals the pancreas to release more insulin. I have had several episodes in which I ate too much, got dumping and an hour later went into hypoglycemic shock. Needless-to-say, I have become cautious over how much I eat. (I find this particularly embarrassing at restaurants, when I'm convinced the waiter or waitress thinks I'm too cheap to order a real meal!)

The closest thing to a complication happened just recently. My anastomosis, the junction of what's left of my esophagus and stomach, developed a stricture from scaring. This was not unexpected and is easily fixed. A couple of days after Thanksgiving all I could swallow were fluids. No wonder: the opening into my stomach looks like it was about 3 mm. The picture they took before they stretched it out shows an undissolved pill that couldn't make its way down into my stomach. They stretched the opening to 20 mm, which resulted in an amazing difference in swallowing. I can tell that that opening has since shrunk, which is why they normally schedule a second dilation several weeks later. I will probably have to have this done periodically the rest of my life, but it's not a big procedure.

My goal this next year is to think less about cancer in general and my surgery specifically. I admit to a certain neurosis: every time I get some symptoms I've told myself, "maybe this is a new cancer." Last month I got a urinary tract infection and I was convinced I had prostate cancer. My latest experience with the stricture convinced me I probably had some horrible stomach tumor. I can laugh about these things now.

Medical Duct Tape

I just had my 7 week checkup with Dr. Bouvet at the Rebecca and John Moores Cancer Center, the latest addition to UCSD's state-of-the-art medical facilities. Cancer is a daunting word; we all know someone who has tangled with cancer, not always successfully. We all dread the thought of experiencing it first hand, and so any facility with the tag "Cancer Center" tends to be the kind of place we try to avoid.

(This reminds me of the beginning of this experience. Last June, just before I had my annual physical, I started having some mild, but definite, problems with swallowing. I thought at the time, "what if this is some horrible cancer?" When the endoscopy indicated that I had erosive esophagitis, I was actually relieved, because we knew the problem swallowing was caused by something more benign and treatable. That relief was short-lived, as we soon discovered that I did indeed have some horrible cancer—it just wasn't causing that particular symptom!)

The first time I visited the Cancer Center, it was a surreal experience. "I don't belong here." It is profoundly disturbing the first time to see people who are in treatment. I found on my third visit that I noticed more the people who were on their first visit: both they and their spouse have that same anxious look I'm sure I had. I'm now a veteran—a survior.

Today's visit is a quick checkup. I knew how it was going to go: I'm doing great! I can't help but boast of it to the person at the front desk: "look at me, I had my surgery only seven weeks ago!"

Because UCSD is a teaching hospital, medical students are given the task of going in an making the initial survey by themselves, after which Dr. Bouvet comes in. I find I enjoy meeting these young, new healers. I had my list of questions for the doctor:

1. How much of my esophagus was left. (About an inch, which is what I thought. That inch is very important, because it's what squeezes food and liquid down into my stomach.)
2. So, when food gets stuck, its actually getting stuck in the top part of my stomach, right? (That's correct. That should improve with time.)
3. I have a chronic, dry cough: what's that about? (Don't know for sure. Some have it, some don't. One patient had it for nine months, then it suddenly disappeared.)
4. When can I get on a horse again? (Let's be conservative and wait until at least February.)
5. Can I actually get my surgeon pose for picture with a roll of duct tape? (Clearly unsure of the humor here, but sure: why not?)

I started back to work this week. I'll work four days a week for a little while, and I find a lunchtime nap is just the ticket. Life is returning to normal again. This is a good thing.

Four Weeks Later

It is hard to believe that it was four weeks ago this morning that I went in for surgery. I have to be honest: it has been the longest four weeks of my life and I will be glad when another five months have passed and life is back to some kind of normalcy.

As you can see from the immodest picture, my eleven-inch belly scar is doing very well, and I expect that it will fade into a gentle reminder, a fashionable kind of "trophy scar." I'm beginning to suspect that my neck scar, which is not quite four inches long, will remain a more dramatic reminder, although it is usually covered by my shirt.

My stamina is growing steadily. I notice that my naps are shorter and that I'm going to bed later. However, I have never felt the need for naps more and I suspect they will be a regular part of my life for a while.

The big challenge is eating and my weight. My weight is down 18.5 lbs. (8.4 kg.) from four weeks ago, and it seems to be dropping by almost a half pound per day. This is expected and usual and will slow down, and then reverse itself over the next several months. It is gratifying to be at my ideal target weight and wearing clothing sizes when I first got married almost 33 years ago.

Meanwhile, I'm ready to greet the New Year and return to worrying about more mundane matters. And, I promise: no more pictures of my scars!

Cancer Free!

Yesterday I had my first checkup since leaving the hospital. It is hard to believe that it has been only slightly more than a week since I returned home! All is well, my only challenge is a continuing and not unexpected loss of weight. I definitely need to get some new clothes!

Pathology on my esophagus and ten lymph nodes that were removed uncovered absolutely no signs of cancer. Dr. Bouvet said that it appeared that we caught this cancer unusually early. A very good thing, since he said that once it starts to spread it is very difficult to completely eradicate. In my case, I can be considered cancer free.

One friend asked if I regretted such a radical procedure in light of the knowledge that the actual cancerous area was so small and didn't show signs of spreading. The quick answer is, no: this cancer is poorly understood, especially in the early stages, and is so bad that you don't want to second guess it. Some lesser and experimental procedure would have left us wondering (and I'm sure testing) for years. However, the question opens an old wound: it is common when first diagnosed to try and "bargain" for something less invasive. I remember when I went to my oncologist, Dr. Just (a wonderful physician), with my list of alternatives. He gently shot each down. No, we wanted to go the path of the tried-and-true.

It's not entirely without feelings of regret. I am occasionally hit with the realization that I have had an often-used (if overlooked) organ simply removed and replaced by another organ (my stomach), which has been essentially mutilated to do double-duty. Consider the alternative: a likely early and rather ugly death. Whatever regrets I may feel quickly disappear. I'm sure I'll feel even more so once I can get into Shilo's saddle and ride off into the sunset with Aletha.

Working the (digestive) kinks out

You don't just cut the volume of the stomach in half, widen the pyloric sphincter, and expect life to go on as before. I read about that in advance and intellectually understood it: smaller and more frequent meals. If only it were that simple.

I am now experiencing a fairly mild form of dumping syndrome, or rapid gastric emptying. This is caused when undigested food is pushed into the jejunum of the small intestine. "Early dumping" happens almost immediately and results in bloating and a shortness of breath with me; more serious cases can include nausea, vomiting and diarrhea. Several hours later you get "late dumping" with sweating, dizziness and weakness. Incidentally, dumping syndrome is one of those dark little secrets of gastric bypass surgery: you don't just sit back as the pounds fade away!

Today I made the mistake of eating two pieces of french toast: about two-thirds of what I would normally eat and I knew I was being a bad boy. The good news is that my appetite has returned, the bad news is that that was probably double what I should have eaten, especially since it was almost pure carbohydrate.

I realize now that even though I'm eating much less than before, I've still been eating more in a sitting that I probably should and still need to spread that out more. I'll have to be more careful as I work these kinks out!

Pain—or Not!

I went into this surgery expecting a great deal of pain. In fact, I was warned of it. I have an 11-inch incision from my bellybutton, up and a 4-inch incision on my neck: how could I not?

The truth of the matter is that at no time have I experienced intense pain, just mostly background aches. One of the best things I did was wean myself from the morphine, which only seemed to give me bad dreams. I have had nothing but acetaminophen (Tylenol) for at least five days. They sent me home with a huge prescription for Vicodin, a powerful narcotic, which I have yet to fill!

Perhaps my seemingly incredible recovery is related to my pain "threshold." I'm thrilled to be on only low-grade pain killers and grateful that I'm not in a narcotic daze.

Meanwhile, even the little pain I was experiencing has diminished drastically overnight. It is no longer uncomfortable to cough of sneeze. I've been able to cut back even on the acetaminophen. Even better days are ahead!

Eating and Swallowing

Changes in my eating lifstyle were inevitable, given my reconfigured upper digestive system. I was told my stomach has about half the volume it had before, and they widen the pylorus from my stomach/esophagus into my intestines.

Swallowing is a little different, at least for now. No more "big gulps" for me, but at least I have a reasonable excuse for my frequent burping. Perhaps that will get better. In fact, I was told that the anastomosis, that is the junction of my stomach to drastically shortened esophagus, will continue to heal for six months.

What I notice most of all is how quickly my little stomach fills up. There is a very fine balance between just right and too much. Too much food results in a very bloating feeling and hours of discomfort, which is exhausting. It is easily the most difficult aspect of recovery for me so far. I was told that the portion of my stomach below the diapragm will eventually stretch out, giving the stomach a more normal capacity.

All-in-all, I am the beneficiary of years of fine-tuning for this procedure. They now know how to shape the stomach just right, how to widen it just enough at the bottom to maximize operation. It's quite a miracle, when you think about it.