It is always best to start at the beginning. On January 1, New Years Day, my finances woke up feeling bad. We thought it was something from last night’s dinner or maybe the flu, but her pain was just too bad. Simply put, he had appendicitis. He spent 7 days in the hospital and a week at home recovering. He used up all his sick time, personal time, vacation time, in the first month of the year. Good way to start the new year. However, he thanked me for saving his life. If he hadn’t arrived 2 weeks earlier, he says he could have died in bed with a burst appendix, refusing to go to the hospital.

Rob recovered and we were married in March. Everything was fine, except that his boss kept firing people and giving them their workloads. After doubling his accounts and threatening to fire him as well, he quit his job in July. After calculating that we had a reserve of 4 months for him to find a new job, I gave him my blessing. I was so stressed all the time and it didn’t help our new marriage. I was working in the mortgage industry and things were not going very well, but they were good. He did not return to work for 22 months. The only good thing that happened during this period was that you lost 60 pounds, walked 6 miles a day, and felt healthier than in years. Our relationship had its ups and downs, but it was actually stronger than ever.

The new job was great! The pay was excellent and the staff small. He was given a lot of responsibility and flexibility. Life was good again, although my mortgage business was suffering. He was hired in May 2005. In January 2006, the company sponsored a management conference in Niagara Falls, Canada, and when he got home he thought he had caught a virus; the flu or a cold, nothing to worry about. On Valentine’s Day we went to dinner at his favorite restaurant. After the main course he told me we had to go, right away! I was surprised because he loves their desserts. He couldn’t feel his legs from the knees down. He said they felt like they were asleep. We went home and he went to bed.

The next morning, he stayed in bed all day. I repeatedly tried to get him to go to the doctor without success. He has no recollection of that day. At 6:30 the next morning, he told me that his arm was now numb as well. I immediately took him to the hospital where they started testing him. You know it’s serious when doctors rush to get tests done in the first half hour you’re there. The doctor came in and told us that he had spoken with a neurologist and that they believed it was one of three things: muscular sclerosis, Huntington’s disease, or Guillain-Barre syndrome. They believed it was Guillain-Barre syndrome, or GBS, and that they had to do a lumbar puncture to be sure. Six needle sticks later, they finally got the fluid they needed. The test was inconclusive. The proteins they were looking for were higher than normal but not as high as they expected. By now, Rob’s tongue was numb and he was having trouble speaking. They decided that they should give him the treatment for GBS and that they would know quickly if they were right or wrong.

GBS is an immune system irregularity that affects people after they have had a viral infection. The immune system goes haywire and after the virus kills it continues to search for more, thus attacking nerve endings, usually starting in the legs and arms and moving into the respiratory system. Many people affected by this end up on ventilators, sometimes for months before treatments change the situation. Some die. Others receive treatment, but have chronic recurrences for the rest of their lives and need monthly treatments. Rob was lucky he was caught so fast.

Rob was admitted and told that the treatments were an IV / IG solution. It was a plasma-type treatment that was performed in 12-hour segments, once a day for 4 days. IV / IG is extremely expensive and there was a shortage across the country at the time. Getting the treatments could pose some problems, but we were told that that hospital had 1 1/2 on hand and would immediately begin ordering the rest from other hospitals in the area. They were able to locate the rest and they could complete their treatment. He was feeling better and was able to walk in 2 days. After 5 days in the hospital, we went home. Doctors told us that she would have symptoms similar to chronic fatigue, possibly for 6 months to a year. We later found out that residual symptoms can last up to 5 years and may never go away completely. Some of these are tingling in the limbs, loss of balance and coordination, tremors of the whole body, numbness in the tips of the fingers and toes, slurred speech and difficulty speaking, finding the right words, many that resemble alcohol abuse or stroke. Little did we know that February morning that Rob would not go back to work full time for another 9 months.

Our home life started a new routine. We were still newlyweds and Rob slept up to 20 hours a day, sometimes waking up long enough to eat, watch TV and then go back to sleep for another 6-8 hours. This continued until June, when he suddenly began vomiting for no reason. He vomited profusely almost every morning and produced large amounts of bile. He suffered from diarrhea, abdominal cramps, acid reflux, headaches, tremors, and body aches. One morning, while we were making love, a rare event in itself in those days, she suddenly jumped out of bed and ran to the bathroom to vomit. I didn’t take it personally, but I knew I needed to get some tests done.

We saw our family doctor who agreed that something was wrong and ordered a bunch of tests: blood tests, 24 hour urine collection, pancreas, enzyme and adrenal gland tests, everything you can imagine. Everything came out negative. They sent us to a gastroenterologist to determine if it was an ulcer. Rob was scheduled for an endoscopy procedure, in which they stick a small camera down his throat into his stomach to see if everything is okay. The initial results told us that there was no ulcer, but that it would return in 30 days when the pathology of some biopsies would present.

In late July, Rob was told that he had Barrett’s esophagus, a result of acid reflux, and that the lining of the esophagus had worn away. When the tissue grew back, it was intestinal cells instead of esophageal cells that caused what they call dysplasia. This can be mild to severe and severe indicates a cancerous or precancerous stage. Rob was severe. The doctor told him that he was lucky that they infected him because normally when it becomes very serious, there is nothing they can do; that the person cannot swallow and that the cancer has invaded nearby organs. After 4 more endoscopies, they determined that the cancer had probably been contained in the esophagus and that if they removed it, it would be fine. REMOVE HIS ESOPHAGUS? !!? We were stunned.

During this interval between testing and diagnosis, Rob had been cleared to return to work 24 hours a week from home. We were very grateful for this as we were beginning to feel the hardship financially. Since my main job was so irregular, I had accepted a second job that was very stressful and I often worked 9-12 hours a day. However, due to his recent illness, his doctor did not allow him to return after 40 hours. I was still having a hard time staying awake and focused for more than 4 hours straight. After the diagnosis, she went to the office and explained to her boss that she needed surgery and that it was scheduled for the end of September, within a month. I would be out for 3-4 weeks. His boss put him on medical leave without pay right away. This was a great blow. We expect that you will continue to work your 24 hours until the surgery date, but we needed to focus on your surgery. We had no idea how things would be after that.

The surgery lasted 9 and a half hours. They removed his esophagus, disconnected his stomach and stretched it to find the remaining 2 inches of esophagus. So now her stomach was a tube behind her rib cage and she had a feeding tube in her abdomen. He spent 5 long days in the ICU on heavy medication before finally being discharged to a general flat to finish recovering. After 4 more days, he returned home. He was allowed to eat whatever he felt comfortable swallowing. It was 2 more months before I went back to work full time.

Rob still suffers to some extent to this day, balance and coordination problems, numbness, and a lack of small motor skills, such as typing on the computer keyboard. Eating is still a challenge a year later. You have learned to eat smaller portions more often throughout the day, but you are thankful that you can eat. We both thank the doctors who diagnosed him and the speed with which they treated his illnesses. Since both diseases were completely unforeseen and not lifestyle or genetic, we were financially unprepared to deal with them. His employer continued to keep him on his health insurance and, although we did not have disability insurance, we did purchase supplemental hospitalization insurance after Guillain-Barre syndrome struck. Life changes fast, get ready.