Feeling sad

It was nine years ago (2002) about this time of year that my wife Nancy was coming to her wits' end about the state job at the Tennessee Department of Human Services that she had started almost a year prior. She had earned glowing performance evaluations, pleasing clients and impressing coworkers with the boundless energy, nearly flawless performance and new ideas that she brought to the job. But there were two big problems: (1) The job had a 12-month probationary period, after which she would be under the protections of Civil Service, but before which she had absolutely no worker's rights. (2) Her department head hated her. He hated her ebullient and irrepressible personality and demanded absolute and total quiet on the floor where she worked. Her cubicle was positioned right outside of his office, so he could hear every word she spoke - and she spoke a lot! And so with only a few weeks to go before her probationary period would have expired, and with months of near-perfect evaluations from supervisors, he determined to end her employment. At first he pressured Nancy's immediate supervisor and then the next supervisor up the chain of command to write an unsatisfactory performance evaluation. But to their credit they both refused to fabricate an untruthful evaluation. And so the division boss removed Nancy from their supervision and placed her under another sub-boss over which he had more control. Then the unsatisfactory evaluations started being written with the goal of having a basis for dismissing her before she had achieved 12 months of satisfactory performance. Nancy protested these unfair evaluations, all the way up to the boss of her department head and who also happened to be a college classmate of mine (William & Mary, 1968). Months earlier Nancy and I had shared a pleasant dinner with her as well as a trip to Tullahoma to attend the funeral of a colleague's mother. But all of these pleadings fell on deaf ears, and she refused to intervene. So much for integrity.

And so it was on March 13, 2002, just five days from today, that I met Nancy for lunch in the AmSouth (now Regions) bank cafeteria. She was shaking with fear and dread. And so I said, "let's go," and we proceeded to march across the street and up to her office on the 7th floor of the Citizen's building, where we quickly packed her personal belongings into a cardboard box. The last thing she did before logging off the last time was type an email to her boss and coworkers explaining that she was resigning effective that day.

During the next couple of weeks we carefully prepared the documentation necessary to pursue an EEO complaint. But as the days progressed Nancy began feeling weaker, nearly fainting upon arising from a chair, and then starting to show bruises on her body. It was time for her eye exam, and so when the Optometrist reviewed her retina scans, he told her she must have diabetic retinopathy because he noted the presence of burst blood vessels inside her eye. So we decided to go to her primary care physician for a complete physical. She seemed fine other than being a bit pale, and at the end of the appointment the nurse drew a sample of blood for testing.

The next morning at work I got a call from Nancy. The blood test results showed an abnormally low level of platelets (the component that allows blood to clot). The nurse who called her suggested that we proceed immediately to St. Thomas hospital for further diagnosis. And so I raced home, we packed an overnight bag for Nancy and raced back to St. Thomas where we checked in at the Emergency Room. Another blood draw was taken, and the ER doctor came in to explain that they were going to check her into a room for further testing. Later that afternoon she had the first of what would be six bone marrow biopsies, in which a long needle is inserted deep into the hip bone to withdraw marrow - a very painful procedure. The next day, which was her 50th birthday, Oncologist Dr. Seth Cooper came to Nancy's room to give her the bad news: She had Acute Myelogenous Leukemia (AML), which would be fatal within weeks unless she began an intense regimen of chemotherapy. The first round of chemo would last 30 days, after which she should go into remission and then after a week or so rest would return for a final round of 30 days. The chemicals used are so toxic that they cannot be introduced into an arm vein, because the vein would be quickly destroyed. Instead, a large catheter was inserted directly into her chest into which the chemotherapy and other powerful drugs were pumped 24 hours a day, 7 days a week. This chemotherapy completely destroys the patient's immune system, so few visitors were allowed, and not even potted plants could be brought into the room. To prevent infections that could be fatal, she was pumped with powerful antibiotics, antivirals and antifungal drugs, some of which had nearly fatal side effects by themselves. She also required lots of blood: 100 units of platelets and 50 units of red cells during her hospitalization.

But she did not go into remission after the first round of chemo. Exhausted and spent after a 30-day nosebleed and other complications, Nancy wanted to go home to die. And so we went home under Hospice care to wait for the end. The Hospice nurse came once a week to draw blood and take vital signs as well as address any issues that arose. But after a couple of weeks her blood chemistry started to improve, and she decided to go back for another try. This time after the 30-day hospital stay she was finally in remission. She went home for a week to rest, then re-entered the hospital for a final 30 days of chemotherapy (known as "consolidation").

We spent a total of 102 days in St. Thomas Hospital, with me sleeping in a tiny cot beside her bed most nights, returning home on weekends to pay the bills. My employer (also State government) allowed me to go on Family Medical Leave, which ensured I wouldn't lose my job, although I lost pay after exhausting my leave balances. My good neighbors mowed our lawn and brought in the mail while I was gone.

After being treated with chemotherapy, the preferred final treatment is a bone marrow transplant, in which the patient is given powerful drugs that completely destroy her own marrow. Next the donor's marrow is introduced into the patient's bloodstream, and if all goes well, it will automatically go into her bones and begin producing marrow and eventually produce a new blood supply free of leukemia.

A couple of months after she left St. Thomas we visited a bone marrow specialist at Vanderbilt, who explained that Nancy had very few options. Her family members had been tested as potential bone marrow donors, but none was a possible donor. The odds were extremely long for achieving success with a non-related donor considering Nancy's age. The most likely outcome would be a slow and painful death in the hospital of complications following the transplant attempt. And so Nancy decided to enjoy the life she had left and hope for the best.

Nancy enjoyed 6 months of remission, during which we enjoyed a week in Hot Springs, AR, and Nancy got to hold her newborn niece Lauryn. But shortly after the beginning of 2003 she began experiencing increasing pain behind her right ear, which eventually resulted in the collapse of the facial muscles on the right side of her face. The pain became so great that only liquid morphine could give her any relief. A Hendersonville ear nose & throat specialist treated her unsuccessfully for a couple of months with antibiotics and ear tubes, and finally out of frustration I took her to Nashville ENT, where a CT scan showed a large mass in her mastoid bone (a honeycomb bony structure behind the ear). It was impossible to perform a needle biopsy through the thick bone to determine what it was, and so surgery was arranged. I can still vividly recall Dr. Michael Schwabber coming to see me in the hospital waiting room after he had performed the surgery. He said when he opened her up, the mastoid was filled with a greenish substance that he recognized as leukemia that had escaped from her blood system into the mastoid bone and had been growing for months. The operation did relieve much of her pain, but by this time we knew the end was near.

One last bone marrow biopsy confirmed that the leukemia was back with a vengeance. So again we called on Hospice to help me care for her while she lived out her last days at home. I got to be a pretty good nurse, learning how to dispense IV antibiotics and care for the large catheter that had been implanted in her chest to dispense the chemotherapy.

Nancy called her friends and family to our home for a last goodbye. First our fellow choir members came to give her a final communion and sing some of her favorite songs. Then her family and some close high school friends from Kokomo came down for one last party, complete with lots of laughter and fond memories. I remember Nancy asking each of us what they would remember about her. This was a tough one. Mike Newburn said the thing he would remember is that Nancy is the kind of person who made you feel good about yourself. The next day my son & daughter showed up with their children to say their last goodbye.

And then the waiting began. It was an agonizingly slow process, death. Every day Nancy got a little weaker. I finally had to move into the guest bedroom across the hall in order to get any sleep, because she was constantly stirring. I can remember her asking one morning, "Why does this have to take so long?"

It was on Monday, April 28, 2003 at 6:15 pm that the Angel of Death finally came to visit my dear Nancy and relieve her suffering for good.

And so every year about this time when spring is just around the corner, and when the daffodils begin poking their little heads above the ground, I think of what began for Nancy and me in 2002 and ended a year later in 2003.

I still feel a mixture of anger and sorrow. I understand that leukemia is basically a defect of the immune system, which fails to recognize and kill a cancerous cell that then divides uncontrollably. And I know that the immune system can be compromised by extreme stress, and so I am angry at the state government for allowing such a tyrant to rule a department with terror. I am angry at myself for pushing Nancy into getting a job with the state. Mostly I feel deep sorrow at losing my best friend. But I retain some degree of satisfaction knowing that I went above & beyond the call of duty to ensure that Nancy's last days on earth were as comfortable as possible.