Losing My Religion

Update: I put together a post several days ago that I didn't get around to finishing. Since then (see below) we have been in the clinic almost daily as JoJo has been in decline. She has become extremely weak while continuing to receive infusions of antibiotics and undergoing a battery of tests. Today she was admitted to the hospital while they work to get her back on track. A CT scan revealed that she was suffering pneumonia which was encouraging in some respects. She has become very short of breath, struggles to make it up the stairs and has needed a wheelchair around the hospital and clinic. Pneumonia would explain that. However, the doctors don't think that what they are seeing on CT is enough to make her as sick as she is. She is on so many meds to treat so many different issues that they are having a hard time sorting it all out. Another bone marrow biopsy is on tap to see what may be in the blood, but they have to get her strong enough first. The doctors are scratching their heads and JoJo is understandably frustrated.

Sheesh! This story has more chapters than War and Peace. We are back to asking you to pray that the doctors can identify the source of JoJo's current struggles and give her strength, patience and comfort. 

Last week: Topic Number One. JoJo is hanging in there, but it has been a frustrating and discouraging week. She is getting around, but her stamina is low. The current issue du jour is abdominal and no one is quite sure why. It could easily be graft vs host disease as the gut is a frequent target for that affliction. The course of treatment is..........you guessed it! Steroids. It may be that as JoAnne is weaning from the high doses that she started with (she has decreased from 120mg per day to 30) the gvhd flares up. They have been treating her with some other forms of the drug and it is hard to tell whether they are helping.

She also maintains a course of multiple antibiotics. All of us usually struggle intestinally when on antibiotics as they also kill active bacteria in the gut that is important to it's proper function. JoJo is on 4 or 5 antibiotics at any one time so that could be a contributing factor. In any event, she can feel ok for a day or two and then get suddenly attacked day or night by a case of the scoots that will last for a few hours. She loads up on loperamide among others and gets it under control, but not before some dehydration and serious fatigue set in. These episodes also probably hamper her nutrition uptake so she has lost some additional weight and we have to watch her electrolytes.

All of this weighs on her spirits as she wants to be celebrating and living like the cancer is gone, but these non-life threatening aggravations prevent it from happening. We are making regular trips to the clinic and are hopeful that in time, all will be sorted out. The nurses tell us stories of patients they treated who were struggling mightily at one year. At two years you can't tell they were ever sick. I don't know it that is encouraging or discouraging. Ah, heck! What's another year of this roller coaster?

Keep the faith