Wednesday, December 26, 2007

The New Plan

Xmas Sunrise over San Francisco

Well, we finally had a sit-down meeting with the doctor today. Dave was originally scheduled to receive his eighth infusion of Rituxan in the outpatient clinic today, but Monday's bloodwork showed an ominous drop in his Hematocrit, Neutrophils, Lymphocytes and Platelets. The Neutrophils were the most alarming - down to 228 in absolute numbers. As soon as the results came (via automatic email from the Lab) yesterday afternoon, Dave became agitated and by evening he was having a real meltdown. We hadn't heard from the doctor in three weeks, in spite of Dave's repeated emails and phone calls expressing his concern and asking to for more information (like, what's going on and what's the plan?) Dave was scheduled to meet with the doctor today, after the Rituxan infusion, so we figured our questions would have to wait until then.

This morning, as we were getting dressed to go to the hospital, Dave got a call from the clinic saying that there had been a change of plans. He was supposed to come in earlier, to get a Bone Marrow Biopsy, then meet with the doctor, and then the Rituxan infusion, maybe - the doctor would discuss it with him. Dave had been relentlessly mulling over the possible scenarios for the last 24 hours, and this just added to the speculation. But as we wolfed down some breakfast, Dave concluded that the doctor was sure to cancel the Rituxan infusion, so he decided we didn't need to pack any lunches for the day. He was nervous about the Bone Marrow Biopsy, but figured it was for the best, because then maybe the doctor would tell us something and at least he wouldn't have to sit in the infusion chair for 3 hours, getting Rituxan.

When we got to the Oncology Clinic, we didn't have to wait long, and Dave was called in soon after we arrived. But instead of taking him to the procedure room (where they do the biopsies) we were ushered into the doctor's exam room. We waited there a long time (or it seemed that way to us.) When the doctor came in, she asked him how he's been doing since she saw him last month - he's actually been feeling pretty good, and the only changes have been some mild night sweats during the last few days. Then Dave asked her what was going on with his dropping blood counts and she said that the bone marrow was depressed and that she didn't really know why. It could be the Rituxan, but maybe not. She had changed her mind and decided against the Bone Marrow Biopsy because it wouldn't really show much, with his marrow so depressed. But she wanted to go ahead with the Rituxan infusion for today. Dave wanted to know why. She said she wanted to go after those last few cancers cells lurking around in his body. Dave said he was worried about the Neutrophils going down. She said she was worried about it too, in fact everyone at the clinic was worried about him. I wanted to know how much lower Dave's counts could safely go. At that point, she said that he didn't have to have the Rituxan if he didn't want to - it was up to him. She said it could go either way, and she would be OK with whichever he decided. He asked her again about the Rituxan and what it was doing. Then he looked at me. I agreed that it was tempting to want to get those last cancer cells, but I also was concerned about his Neutropenia - I told him it was his decision. He said that he wanted to skip the Rituxan for today (later he told me that he had already made up his mind that he didn't want any more Rituxan and that he was relieved that she made it easy for him to refuse it.)

When she asked if we had any more questions, I wanted to know how we could get in touch with her. She gave us a new phone number - her case manager - and told us to call that number when we had questions.

The latest new plan: Give Dave's bone marrow a "rest." Check it with a bone marrow biopsy at the end of January. No more weekly blood draws - check it in two weeks, mainly to make sure the Hematocrit isn't falling too fast. Keep taking infection-avoidance precautions.


Anonymous said...

Wow, that's a pile of things to get your head around. Letting the body try to bounce back sounds eminently sane, and I'm glad Dave is continuing to feel ok.
May 2008 be a better year...

David W. Sumner said...

I was on pins and needles Tuesday night and expecting a call from the Doc. So Wednesday morning when it came I was pretty sure we were about to change course once again. The Doc was puzzled by the numbers and she said that everyone else in the clinic was puzzled as well, which told me she was consulting with other docs and that was reassuring. At that point knew I had some control in what was about to happen so I pressed for some specifics, knowing that I wasn't going to take another infusion for a while. I had made up my mind but I wanted to make sure I was getting complete answers to my questions. The Doctor was very helpful and understanding and more than willing to listen to me and work with my decisions. Basically I went with how I was feeling and what I felt I could tolerate and we agreed on the next course of action. Over all I'm pleased with the treatment I've been getting and trust my Doctor. Communication has been tough sometimes, but hey, it's the Kaiser system, the Doc isn't necessarily happy with it either.

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