Jan 21, 2013 - 1:15 pm
I am writing this narrative to describe my experience with esophageal cancer in order to respond to the emails I receive from others diagnosed with the same affliction. Please excuse my misuse and misspelling of the many of the medical terms, but I’m tired of trying to keep them all straight.
During August 1999, I was diagnosed with adenocarcenoma of the esophagus with two one-inch metastatic lesions of the liver (stage IV cancer), an affliction that carries a statistical 5% five-year survival rate. On 15 September 1999, I underwent an esophajectomy/removal of the esophagus and attendant two-inch adenocarcenoma (tumor). This procedure included removal of a large portion of my stomach and a “gastric pull-up” which left the remainder of my stomach just below my throat. After the surgery, I was in intensive care for eight days and in the hospital for about twelve days. Before the surgery my normal weight was between 168 and 172 lbs; I bottomed out at 143. I left the hospital with a “J” tube inserted in anticipation of nutrition problems during planned chemotherapy and a single lumen Hickman catheter inserted into my aorta. After about a week I began having trouble breathing, the end result of which was the draining of 100cc of fluid from each lung, first one, then the other about a week later. (This is an expected side effect from this surgery.) Also, the surgery left me with a paralyzed left vocal cord because of trauma to the recurring laryngeal nerve.
There are many nutritional problems associated with recovery and living with the results of this surgery. I met with nutritionists learning to deal with dumping syndrome, hypoglycemia, lactose intolerance, etc. What is left of my stomach holds about two cups of food, so now I have to get 250-300 calories every two to three hours or I can’t catch up. I also have to drink liquids thirty minutes before or after I eat or the dumping syndrome kicks in. It was also about a year before I could chug, for lack of a better term, vice taking liquid in sips. Eating is a challenge, but improves with time. I am currently able to eat most foods, but in relatively small amounts.
After recovery from the esophajectomy, on 5 November 1999, I underwent a left lateral segmentectomy of the liver and a right lobe ablation to remove the two, one-inch tumors from the lobes of my liver. One was surgically removed and the other was ablated because it was close to a major vessel. The excised tumor tissue was sent to Oncotech (located in California) where the cancer was cultured then various chemotherapy treatment fluids were tested. With the tumors removed, I underwent chemotherapy from January through April 2000 to eliminate any systemic cancer. Prior to commencement of the chemotherapy, my surgeon inserted a single lumen Hickman device to facilitate treatment. I underwent three rounds of treatments in a series of five-week periods. I was to receive a five-hour treatment once each week for four weeks, rest one week, then start the second five-week period, and so on. Each week I received an infusion of fluids, then treatment with Irinotecan (Composar) and Cisplatin (I’m not sure of the spelling). As it turns out, during each round after three weeks of treatment my white cell count was so low that the fourth week was canceled, resulting in a two-week rest during treatment periods. By the end of chemotherapy, I was so sick that I could hardly make myself report for treatment, but I made it through. I remember sitting in the chair trying to regurgitate while the chemicals were being administered.
On 17 May 2000, I underwent a recurrent left inguinal hernia repair that corrected a condition caused by constipation as a result of the pain medication I had received during the previous surgeries.
On 29 May 2000 I underwent a layryngoplasty/thyroplasty to repair my left vocal chord that was paralyzed as a result of the removal of my esophagus. The first effort was the insertion of a Gore-Tex ribbon that failed over time. On 27 September 2001, I underwent a revision medialization laryngoplasty to insert a Teflon implant in place of the Gore-Tex. We waited one year to see if the vocal cord would come back, but it did not. Dr. Blake Simpson of the University of Texas at San Antonio, who did the second surgery, told me that in his experience once this nerve shuts down it does not come back.
During February 2004, I was diagnosed with an acoustic neuroma called a vestibular schwannoma (acoustic tumor). The statistics for this affliction are 1 in 100,000. The good news was that it was benign, but would continue to grow until it pushed against my brain stem and would ultimately kill me. So on 12 April 2004 I underwent a suboccipital craniotomy to remove the tumor. Two days after that I had to have a “redo” because cerebrospinal fluid was leaking through my nose. The end result of that surgery is that I am now totally deaf in my left ear, have balance problems because of concomitant damage to my balance organs, and have tinnitis (continual ringing in my left ear). I am now “disease free.” My oncologist will not use the word “remission” because I was stage IV when diagnosed.
I guess that because of my training and profession, 32 years in the USMC infantry, I believe that you only win on the offensive; on the defense you only avoid defeat for a short period while your enemy builds strength and then attacks you again. With resolve you must attack it—and do it immediately. Give it no quarter because you will receive none. You can’t negotiate or reason with this enemy; it is heartless, knows no boundaries, and has no regard for the rules. This may sound brutal, but with this cancer it’s fight hard or die. My doctor, an Army trauma surgeon with two tours in Iraq, told me that if I wanted to go for the “cure” I would have to remove the tumors—she was right. Our strategy was to remove the tumors surgically and then kill the movers with chemotherapy. My case is different from other survivors in that I had the surgery to remove the tumors before chemotherapy. It seems most others go through some sort of regimen to reduce the size of the tumors before the surgery. I do know that the Oncotech lab required a gram of the cancerous tissue to be surgically removed in order to culture it for testing. I attribute much of the success of my case to their recommendations for which chemotherapy drugs to use.
With this surgery, doctors are reluctant to proceed if you are not in decent physical shape at the onset. I firmly believe that your doctors will be more aggressive with your treatment if you have a positive attitude. Attitude is a huge factor in recovery.
On a personal note, I have to say that it never really occurred to me that I would die. I have an abiding faith in the Lord and put my trust in Him – Job 13:15 “Though he slay me, yet will I trust in Him.”
I am now twelve years beyond the end of treatment—13 years in April. I am now 66 years old, 5’9”, 160 lbs, and still get in my three mile as required by Marine Corps order. I good weather I get in some ten mile jaunts on my bike. In fact, I can still pass the physical fitness test but they won’t let me back on active duty. J
Good luck – fight hard – Semper Fi,