Never underestimate the value of friends

On Jenni's first day in the hospital, her dear friend Alma Mitchell showed up and took charge. "You have to keep after the nurses," she said. "Otherwise, they tend to ignore the patient."

We had very good nursing care, but Alma made sure it was excellent. She and I learned how to operate the IV pump, mainly to keep it quiet. If Jenni laid on a tube, it sounded the alarm. If the fluid got low, or if the injection site wasn't just right, or sometimes for no reason at all, it raised its annoying voice loud enough for nurses outside the room to hear. They didn't respond immediately because pumps and monitors in other rooms were constantly wailing too. Alma and I learned to push a certain button to silence the beast.

Alma came and spent hours at Jenni's bedside making sure she was comfortable, giving her something to drink, reading to her, chatting, laughing, and allowing her to sleep without interruption. I was able to work while Alma was there. How do you thank a friend like that?

I spent my mornings and evenings with Jenni, following Alma's lead, giving her the extra attention the nurses couldn't give. About 9 p.m. on her second day in the hospital, my friends Don McGee and Chad Lyman showed up. Jenni was sleeping so I chatted with them outside the room. Don scolded me for not telling them about our crisis. He has a way of taking you to task and leaving you feeling loved rather than chastened. He and Chad wanted to know everything, so I rehearsed the tale for them, and they gave me their encouragement.

We have a lot of good friends, and their good wishes gave us strength. We know a lot of people were praying for Jenni. I learned something, though. It can get to be too much. I rehearsed Jenni's story over and over again during the first couple of days. In addition to the time it took away from being with her, the story-telling took an emotional toll. I was reliving the initial shock of her diagnosis each time I recounted what had happened. In order to avoid that, I designated one neighbor, Greg Ferguson, as the story teller. I updated him occasionally on what was happening and he told everyone else. What a relief! Some of our friends sent cards expressing their love and support. Those expressions were treasured.

How dreadful it would be to walk through the Valley of Death alone. With friends, it becomes possible to notice that there are tulips in the valley.

Know the bitter; savor the sweet

My mother died suddenly at 69. Jenni and our family happened to be staying with my parents during a summer trip to Canada. We had returned to the house from a community pancake breakfast when Dad met us at the door in terrible distress.

"Brent! What am I going to do without her?"

I hugged him and it took a few seconds for me to realize what he was saying. When it hit home, the realization felt like being carried over a waterfall. I went to her room and saw the body that she had left during the night. She was gone.

During the next few days we prepared for a funeral and helped Dad settle her affairs. I picked up a pair of shoes she had worn just the day before she died. They looked so small. I sat on her deck with my brother Grant and reminisced about this remarkable woman who had grown up during the Great Depression on the harsh prairie of Alberta. As we talked, I began to sob. The groaning came unbidden and irrepressible.

Now my own dear Jenni lay near death. I understood how my father felt. The prospect of living without my life partner hit me in the gut and strangled my breath. My own feelings were irrelevant, though. Jenni was struggling to survive, and she needed my strength. I gathered what grit I had and went to the hospital.

She needed a transfusion to replace the water in her veins with blood. Her kidneys had failed, so dialysis was necessary. And doctors needed to flood her system with various medications. An IV in the arm would not do. She had to have a central venous catheter inserted in her chest.

I was allowed to watch as a surgeon did the insertion. He was alone in the room with Jenni and me, and though she was anesthetized and unconscious she moaned when he pushed the CVC into the vein.

Back in her hospital room, Jenni was tethered in so many different ways I didn't know how she would move, but move she did. The transfusions, dialysis, and IV saline solution got her kidneys going again and every hour or so she had to leave her bed and fight through the tubes and wires to get to the bathroom. One of our sensitive sons drew a little cartoon on the white board in her room depicting Jenni in her hospital gown straining against the tethers to get to the toilet, which was just out of her reach. All of our sons are talented cartoonists, so I don't know which one it was. It made her laugh, though, so it was much appreciated.

Always get a second opinion

Our first oncologist had all the appearance and bearing of competence. Her degrees and honors were clearly visible on the wall. She had published in medical journals. She answered our questions with confidence. She took samples of Jenni's blood and scheduled her for five rounds of treatment with fludarabine, each round consisting of five daily IV injections.

We prepared ourselves as well as we could. Jenni wondered about losing her hair, but the oncologist told her that patients did not always suffer that side effect with fludarabine. That comforted Jenni. Pain, fatigue, and nausea are all conquerable, but losing the hair is like losing the self. We recognize ourselves every day in the mirror. The prospect of suddenly seeing a radically different likeness is unnerving.

I accompanied Jenni on a Monday to her first treatment in the oncologist's office. Patients sat or reclined in easy chairs with IV poles next to them holding bags that dripped poison into their veins. The attending nurse was brash and funny, putting everyone at ease with stories and jokes and offering drinks and cookies. After about 90 minutes it was over and we went home.

Jenni didn't feel too well. She returned each weekday and came home feeling worse. By Friday she just wanted to stay in bed. I thought this chemotherapy thing was nothing to sneeze at, and I expected that she would improve on the weekend. It didn't happen. On Monday, I helped her into my car and we returned to the oncologist's office with some very serious concerns. The oncologist looked at her and told me to take her to the hospital a block or two away. I did, but the doctor didn't help with admission. We went through the red tape and were told to wait. Jenni couldn't sit; she needed to lie down, so I found a gurney and put her on it. I put a blanket on her too since she was feeling cold. Jenni doesn't remember any of this, by the way.

After a long wait, someone came and rolled Jenni to the emergency room. She was in bad shape. Her platelet count had dropped to zero. In fact, all her blood counts were out of whack. Because I had been a regular blood donor, giving platelets to the Red Cross once a month for eight years, I called my friends at the Red Cross. "Can I make a withdrawal?" I asked. I knew it was a silly question. It doesn't work that way, but I thought they could give me some tips on how we could obtain some platelets -- fast.

Our doctor showed up looking drawn and worried. Hey! At last! Some sign of caring. She told me Jenni had suffered a rare, unpredictable side effect of chemotherapy. After making some phone calls, she decided Jenni needed to be moved to the regional hospital, where more resources could be tapped to improve her condition. At this point, I realized Jenni could die -- not in seven to 10 years, but immediately.

While the ambulance carried her to the hospital, I took the opportunity to update Jenni's parents on our situation. As is typical of my wife, she hadn't told them that she was sick. Didn't want them to feel the sorrow. There was no avoiding it, however, and I told them everything, including Jenni's claim that this was the best kind of leukemia to have. We had a good cry together, and I headed for the hospital.

I call her Jenni

I call my wife Jenni. Her name is really Linda Ley, but when I was falling in love with her she didn't look like a Linda. She looked like a Jenni. So now she's Jenni Harker, not because I willed it but because she liked it that way. Remember Camelot? No, you wouldn't. You weren't born in 1967. Sir Lancelot loved the queen, Guinevere, and with his funny French accent called her Jenni (Guinni?). We both remembered the film in 1972 when we were courting (hanging out?), and she loved being called Jenni.

In 2002, the year of the XIX Olympic Winter Games in Salt Lake City, we finally reached a point where we could afford to buy her a new car. She had gamely driven an assortment of used vehicles over the years, including an ancient truck--green Mercury on the front end and yellow Ford on the rear--that I had bought at auction for $460. Heater didn't work. We were living in Canada. It was winter. Now we were looking for a new Ford Escort at the local dealership. We picked out a distinguished looking metallic gray sedan and were finalizing the dickering process when our family doctor, Ken Crump, called. He wanted to see her. She had just been for a routine checkup. She went the next day, and that was the day we embarked on a new adventure.

I had to work that day. When I returned home, she pulled me into the bedroom for a private conversation. With an airy tone, she said, "I have the best kind of leukemia you can have. It's called chronic lymphocytic leukemia."

Oh! The best kind! My face must have reflected the positive spin she was putting on this news, because she said later that I appeared to take it very well. "The doctor says I can live a normal lifespan." Oh! Normal! Define normal.

After we chatted for a while about this best kind of affliction, I disappeared into the basement to look up everything the web had to offer on chronic lymphocytic leukemia (CLL). I learned that the normal life expectancy for a person diagnosed with CLL is seven to 10 years. However, many patients had lived much longer after receiving a bone marrow transplant. One of these was Barbara "Granny Barb" Lackritz, who with her husband created a wonderful web site that aggregated information about CLL. Sadly, Granny Barb died in 2003.

Jenni's blood counts indicated that she needed immediate treatment (her white cell count was 85,000; normal is 12,000). So we quickly found a local oncologist and made preparations for chemotherapy. We had no idea that this first treatment would nearly put an immediate end to her life.