September 26, 2006

A much too early end



I came back, in late February, from a long weekend in Morro Bay and Solvang, meeting with several good online friends. Minutes after I walked in the door, Ted (my ex) told me in an off-handed way that he had a kind of leukemia, (Chronic lymphocytic leukemia - CLL) and had had it for a couple of years without having to do anything about it. He had reached a point now, where he was in the process of deciding on chemotherapy.

About a month and a half later, in April, he had his chemotherapy sessions. He appeared to sail through it. No nausea, no hair loss, nada, and was back to par and taking his daily 3-mile walks in a few weeks.

The second bout of chemotherapy, however, was a whole different story. Still the same therapy, Rituxan and but somewhat stronger. He had also been taking prednisone, which helps to build up red blood cells.

This time, the chemo made him feel really cruddy and he kept feeling worse. But he was eating a lot, ice cream, pizzas, pasta, steak and potatoes, all to try to gain back the weight he was losing.

That morning, the week after his chemo was over, he’d had a blood test, a weekly thing. Dawn had come down for the weekend, and we were all going to go out for dinner. Instead, when I called home to tell Ted that Dawn wanted to have lunch, he told me that his doctor had called and told him to get me to bring him to his office as soon as I could.

That was when things got interesting, and scary. His blood sugar was way up (over 300) and his blood pressure was down and he was seriously dehydrated. I'd been trying to get him to drink anything but he was still just sipping at liquids. His appetite had slowed.

Dr. B (long Russian name) told him she was going to admit him to the hospital so where did he want to go. Los Gatos Community. Well, she told him she wanted to have the paramedics come, but then managed to stabilize him so I could drive him to LG - just a couple of miles away. "When you get there, tell the ER that he's having chest pains and is short of breath. Is OK to lie a bit in this case." I did. He was almost immediately brought into the examining room. At that point I finally was able to call Dawn (younger daughter), who called her sister and told her she needed to come up NOW, their dad was in the hospital.

When both daughters were there, I went home to wait for calls. Later that evening he was admitted to the hospital, after x-rays and a couple of CAT scans.

He felt somewhat better, but his blood gases and breathing were not improving over the week, and the doctor was worried that he was going into ARDS (Acute Respiratory Distress Syndrome)... and was doing his best to stave that off. Every time he had one problem improved, another one sprung up, so each day Ted's discharge date was moved away a day or two. The next morning, about a week after he was admitted, we got a call from the hospital telling us that Ted was moved into ICU.

What Dr. M had feared was a fact. He was put on continuous flow oxygen and they were calling in the big guns - radiologist, pulmonologist, another hematologist (his regular oncologist doesn't have privileges at this hospital, but he's being consulted) and others). But, it was definitely not looking great. Enough so that Dr. M suggested the girls consider what they want to do. He has a no-rescuscitate order in his ICU file, and in his files at home.

Thursday, June 1, 2006

They THINK they've discovered what the problem was that caused all this: An acute sensitivity or allergy to one of the chemo agents, possibly the fludarabine. BUT, they're still working to slow the domino effect, and they were hoping this was working.

At least, there was no call from the ICU during the night. It was still a case where each time they managed to alleviate one problem, others cropped up. They were considering a need to intubate him and let a machine breathe for him to help his lungs heal, but that could be an indefinite time. But if he has a "No Resuscitate" on his chart, wouldn't that fall into discussion? Kids weren’t talking about this, at least around me, but they've been told to consider it as a possibility.

Ted was having increasingly serious problems with an infection that he wasn't able to fight off. His immune system was almost non-existent. Transfusions of whole blood, hemoglobin, platelets, none were helping – they were being munched up by the white blood cells that had taken over. Dawn was still here and Lisa had gone home for a couple of days because he had appeared to be getting a bit better. The ICU staff suggested that Lisa be called to return. She came up a couple of hours later. Again.

Things have got progressively worse with only a few encouraging things, but mostly discouraging. He was put on a breathing tube and respirator on Tuesday and even that was not helping much.

The girls and the doctor had to make a decision on what to do if things don't improve at all, or get worse (which has been the case almost all along), if he should be allowed to pass on, or live indefinitely on life support. He had a DNR in his file. Do not resuscitate.

On Monday, June 5th, Ted left us. He’d been on total life support the whole weekend, with absolutely no signs of improvement or ability to breathe on his own. He’d been pretty much unconscious the whole time, going in and out of a coma.

What apparently happened is that the chemo totally knocked out his immune system, allowing a tiny lung infection to grow out of all proportion. Blood transfusions hadn't helped. Platelets, ditto. His body was literally fighting itself. What happened?

The autopsy said the primary cause was “bi-lobar pneumonia” caused ultimately by total immuno-suppression.

Ted’s ashes are interred near his sister in Sebastopol, California. Less than 100 feet away is the grave of Charles Schulz, of “Peanuts” fame. Ted’s in very good, cheerful company.