Diary of a Bad Year, continued

As a precursor to the bad year I started having orthopedic problems due to arthritis and my as yet undiagnosed autoimmune condition in my mid to late 50s, and in 2008 I had thumb surgery for a painful bone spur. My recovery was slow and agonizing: a hand that wouldn’t heal and a frozen shoulder that went along with it. I finally found a sympathetic orthopedist and a talented physical therapist (hard to come by I discovered) who worked with me for over a year and finally referred me to a rheumatologist, who diagnosed my autoimmune condition, which was the underlying reason for my slow recovery. During all this time Mark nursed me, did all the chores around the house that I couldn’t, did all the driving (which is considerable, seeing as how we live an hour away from Santa Fe and 45 minutes from Taos), with very little complaining. He’d always told me that my “productivity” was intimidating (see “Productivity” blog) and I think he enjoyed being depended upon. I was still recovering from a second surgery to loosen up my arm when we assembled a crew to help us build our hoop house in April of 2009, where we planned to grow raspberries and all the warm weather crops we had trouble bringing to maturity at our 8,000 foot elevation. We have many pictures of Mark lifting, drilling, pulling the plastic sheeting over the frame, and reveling in a job well done.

By May Mark was experiencing significant stomach distress—pain and indigestion— and finally went into our local clinic in Peñasco to consult with the physician’s assistant who was his primary care doctor. Here I need to momentarily digress to discuss the one enormously lucky thing about this bad year: health insurance. Right when we started to hit our medical brick walls we found out about a state-sponsored health insurance program called State Coverage Insurance that was designed for low income and self-employed people who didn’t qualify for Medicaid or Medicare—Mark and me, in other words. We got on the plan and quickly told all our friends about it and they, too, got on the plan, which in its infancy was under enrolled (it hasn’t accepted any new enrollment in over a year). It covered all hospitalization, doctor visits, and prescriptions. If we hadn’t had this insurance I would now be over $100,000 in debt.

To continue the story, Mark was tested and treated for a common bacteria called H-Pylori with two antibiotics that wrecked his stomach even further. He continued to have stomach pain and weight loss and had to lobby both the PA and a substitute doc to forget about another course of antibiotics and send him for an endoscopy (coupled with a colonoscopy, although the pain was in his stomach, not his colon). If we hadn’t had insurance, I’m sure he would have suffered through another course of antibiotic treatment because we couldn’t have afforded the endoscopy.

The gastroenterologist conducted the colonoscopy first and found nothing unusual. Mark told me later that when they told him everything looked good in his colon he thought he was home free. When they brought me into the recovery room after the endoscopy and the doc told us both that he had been unable to get the scope beyond Mark’s stomach into his duodenum, which is the beginning of the small intestine, we entered our separate reality of vocabulary, procedures, and protocols we’d never heard of and struggled to understand.

The gastroenterologist never used the word tumor when he told us something was obstructing the passage of the scope. But he did convey a sense of urgency, that we needed to go directly to the hospital or imaging service to have a radiologist try to see what was going on. He told Mark not to eat anything but liquids until he got a diagnosis. I remember walking out to the car with one of the cheery recovery nurses, who didn’t know about the obstruction, who told Mark, I bet you’re hungry after all that fasting today so go enjoy a good meal.

That was the beginning of almost three weeks of a diet of Ensure and mounting weight loss and depression. Mark was always a skinny guy, with no extra body fat to get him through an emergency, but this was more than an emergency, it was the beginning of a long decline that would literally end in starvation.

We spent the rest of the day in the radiology department at the Santa Fe hospital where they made the mistake of giving him barium to drink, which they routinely do so they can see what’s going on inside. The barium couldn’t get through his system, however, because of the obstruction and obscured any decent x-rays of his digestive tract. There followed days of other kinds of scans that were also obscured, but a Santa Fe surgeon eventually came on board and confirmed that the most likely cause of the obstruction was a tumor on Mark’s pancreas, in the worst possible place, the head, where all the veins and arteries are located, and that he was referring Mark to the Cancer Center at the University of New Mexico Hospital. I really can’t remember whether he was the one who first mentioned the Whipple procedure, or whether we Googled pancreatic cancer and found out about it ourselves (oh, using the Internet as a source for medical information opens up that proverbial can of worms and takes you down a dangerous path of too much uninformed information, if you get my drift). The Whipple procedure is what everyone suspects Steve Jobs got when he was sick and treated in Houston, Texas (he also got a liver transplant). It’s a highly technical procedure to remove a tumor from the pancreas that involves removing parts of the stomach and bile duct and then putting everything back together. Only very specialized surgical oncologists are capable of performing it at a few places around the country.

That’s where we thought we were headed, but in the meantime we were at home, waiting for the surgical oncologist at the UNM Cancer Center to work us into his schedule. Mark continued to lose weight and we were still without a definitive diagnosis. Although we were using the words “tumor” and “cancer”, without a biopsy we still didn’t know if the tumor was benign or cancerous. We found out later that an acquaintance of ours in a neighboring village ended up getting the Whipple procedure for a pancreatic tumor that was benign.

Those were some of the darkest days of the 17 months. Mark couldn’t endure not knowing whether the tumor was cancerous and having to wait for entrance into the UNM medical industrial complex. When doctors or nurses didn’t call back immediately, he made me call them again and again or he would call again and again until he spoke with someone to impress upon them that he was starving and needed to be dealt with now, not tomorrow or next week. They assured him that the surgeon was seeing him as soon as he could work him in, and that as long as he was able to keep the Ensure, or other liquid foods down, he wasn’t starving.

Both of our sons were in Albuquerque. Jakob, the older, had moved back to New Mexico after years of working around the country as a photojournalist, was living with his partner Casey, and enrolled in a PhD program at UNM.. Max, the younger, was renting a place in Albuquerque for the summer before heading back to Claremont McKenna College in California for the fall semester. They both came up to El Valle as often as they could during those dark days to be with us, but when I was alone with Mark his depression was almost more than I could bear. He watched TV and played solitaire endlessly. He didn’t want me to play music. He wouldn’t talk to anyone, including me.

Finally, I confronted him. I told him if he couldn’t make an effort now, to maintain some equilibrium, to maintain a relationship with the kids and me while we waited for a diagnosis, there was no hope of us getting through this without irreparable emotional damage. We still didn’t know if the tumor was cancerous. Even if it was, there was the hope of surgery and follow up treatment. It was going to take all of us, in concert, to work our way through this medical maze and he was the linchpin, the one whose behavior would make or break us.