While I'm Waiting

There have been more ups and downs over the past week. The quick re-cap is a) consistent fevers, b) still no white cells or neutrophils. Each day pretty much feels like the day before. When there is a day, or even an hour, of some "highs," I'm afraid to let myself get too excited because I know the "lows" won't be far behind. Mike spent a lot of the last week on meds for nausea and chills (the Ativan/Dilaudid/Demerol/Benedryl cocktail). There were a few days that he spent either sleeping or completely loopy. He would have hallucinations of people or things that were(n't) in the room, or say the strangest things that made no sense. I finally decided it was best not to correct him, but rather to just agree and go with it. It was almost like having a dementia patient on my hands -- both sad and scary. He would even be in a sleep and suddenly start having a conversation with someone who wasn't there, or reach out for things that didn't exist. The doctors, in conjunction with palliative care, finally decided to seriously cut back a lot of his meds. I don't want him to be uncomfortable, but I don't want him to be somewhere else, either.
The week included repeat CT scans and x-rays, each showing no real changes or new areas of concern. The docs continued to juggle his antibiotics based on the results of the daily blood cultures. They even mentioned that they'd like to do a repeat bone-marrow biopsy this coming week to again check the marrow to see what's going on. Mike is on about day 40 since starting chemo, and by every reasonable standard his body should be recovering by now. It isn't.
On Friday morning, during the doctors' rounds, we pretty much got "the talk." The doctor, while obviously trying to remain gently encouraging, was making it clear that they're very concerned with the fact that Mike's body isn't producing any immune cells. Since the doctor wouldn't be in again until Tuesday morning, it's almost as if he was preparing for Mike to get worse between then and next week. He started talking about what Mike's wishes were should his condition worsen, and it be necessary for him to be moved to ICU and require intubation or a breathing machine. (In situations like that, he said, the chance of recovery is about less than one percent.) He then asked us if we had any questions. Mike didn't, but I knew I had to speak up. I knew I had to go out on limb and make something known. I said, "I don't have a question, and I don't normally talk about this stuff, but I just want to say that even though things may not look so good medically, our faith tells us something different. We still believe in a God who heals." In the room of two doctors and three nurses, I seemed to get the polite, pitied smiles, and Mike's primary nurse -- who just happened to be up in the room for a visit -- even put her hand on me as if to tell me it was OK to believe that. The doctor was polite and didn't really challenge me on it, but he again reiterated the seriousness of the situation, and that with no immune system and multiple infections, we wouldn't have gotten this far (over the past nearly six weeks) on faith alone. I can see the concern in everyone's faces. It's almost as if they don't think he will recover. But I know what I've been learning lately, and I had to put that out there. I had to make it known.
Mike is currently on some oxygen, which he really only seems to need while sleeping, and they have him on a heart monitor since his heartrate has been elevated. He isn't eating much at all, and up until tonight hadn't had a bowel movement in over a week. He's so weak that I have to help him get up each time he needs to pee (which seems like it's every hour and a half). Even overnight I stir at every sound he makes. Neither one of us gets much sleep (though at least he gets drugs). Nights are the worst, when things are less busy and more quiet, with less people around. The eerie calm makes me feel even more uneasy and alone.
Yesterday, I bought a dry-erase marker board for the room and have decided to write a "healing promise of the day" to keep before our eyes. Today's is: "For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope." ~ Jeremiah 29:11
I also found and have adopted another scripture, that I will pray and pray as I believe for Mike's body to begin healing: "Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the LORD, and depart from evil. It shall be health to thy navel, and marrow to thy bones." ~ Proverbs 3:5-8