A Widower Recounts the Loss of His Wife (cont'd)
By Donna Engelgau
Q: When did that mindset begin to change?
A: In September 2001 — three months after Julia was diagnosed. While the chemotherapy did a good job of knocking the cancer out — and Julia had been in remission — it came back and it was more aggressive this time. At that point, the doctor suggested a bone-marrow transplant. By December — after more rounds of chemotherapy — we realized it was the only way she was going to live. We broke down and cried.
Q: How did life change for you and Julia at that point?
A: Julia would come home from the hospital for brief periods. We'd go on trips. Life was almost like normal, except she didn't have hair. We went out to restaurants. It was then, though, that Julia decided that we had to face some serious questions. We discussed my role as the primary caretaker of our son. She started to emotionally release from our son, and I began to learn how to provide the daily care for my son. Through all of this, Julia was optimistic. It was her view that it's not worth moping about something you can't control. At this point, neither of us had a clue about what would happen. Through January there was no bone-marrow donor. Her brother and sister were not a match, but soon afterward they found a close enough match. They did the transplant and it took well. The doctors and nurses all encouraged us a lot. Toward the end of March, we got excited and said: "Julia's going to overcome this!" We planned our vacation again — for June and Christmas, but then, two weeks later, it was clear that the leukemia wouldn't rest. It came back in the middle of the bone marrow taking. The doctor said: "I'm going to be honest. We've fought hard. Your leukemia is too aggressive. You're probably going to die from this." At that point, we asked what other options we had. The doctor said we could either endure more chemotherapy, or let Julia go home and pass away. Those were the most final words I have ever heard in my life.
Q: As a couple, how did you cope with this realization?
A: We cried, and after some back-and-forth discussion, we decided to fight to the very end, but we decided to do so from home. By this point, Julia had lost 40 to 50 pounds. She could barely walk. Traveling back and forth from the hospital was too much for her. In June of 2002, she came home from the hospital. She wanted to be home, and I wanted her to die at home. At this point, we had to announce to our support group what was going on. Julia's No. 1 concern was never seeing the baby again. All throughout our ordeal — and most certainly at this point — people were the most important thing. I definitely bonded with a lot of people, and so did she.
Q: Once home, what challenges did you face as Julia's caretaker?
A: Julia was in enormous pain, which crushed me. There was nothing I could do. Her immune system was gone. And while she had digressed physically, she was mentally cognizant. On June 17, I sat down next to her bed and asked her how much longer she wanted this to go on. Because of the pain, she hadn't slept in a week. I thought I had another two weeks with her, but in fact, I didn't. Hospice came in on the 19th and gave her enough medication to help her rest comfortably. She died that evening while I was having dinner with my son. When I realized she had died, I experienced shock, disbelief and relief. I didn't expect her to go then, but I was so relieved that she was out of pain.
