I've lost my moral code: we bought him a barcalounger

I haven't posted in a long while because we've been up to our eyeballs in kids, cancer, appointments, and TPN. Things have been a little crazy at the Marventano household. Beyond my first statement there, I'm at a loss for words.

Jim isn't doing well, folks. He is getting the TPN as planned. His first couple of days of TPN he was hospitalized so that they could monitor his blood levels. Then he came home and the Visiting Nurses Association has taught me to hook up his TPN at night and take it off his port in the morning. Now they are only scheduled to come to the house on Mondays and Thursdays for bloodwork.

The reason I say he isn't doing well is because he's sick every morning. In fact, he's sick every morning at 8:00 am on the nose. We're not sure what's causing the nausea - it could be myriad factors, but the fact remains that he's sick every morning at 8:00, and then gradually feels better throughout the day.

The TPN is contributing to swelling in his legs and feet. He's so swollen that it's becoming painful. They've got him on water pills to try and control the fluid buildup in his abdomen and reduce the swelling in his legs, but they don't seem to be working ultrafast. And understandably, they have him on low doses of the water pills because otherwise the meds could drain his potassium levels, which could cause problems for his heart.

He's not able to eat anything. They told us that could happen because he's getting everything he needs from the TPN.

He's got fluid buildup in his abdomen, making it hard for him to breathe. He can't lie down at all. So he's been sleeping sitting up in a chair. TPN is pure liquid - TPN plus the water pills means he has to get up and use the washroom multiple times per night. Due to exhaustion he's near delirious at night so he gets up at different times to take pain meds as he needs them.

This leads me to the title of the post: we bought him a barcalounger. It occurred to me that he can't sleep sitting up in the old wing chair that he's been sitting in. So I asked if he'd like me to rent him a hospital bed from the VNA. He said no. So then I sucked in my breath and offered to get him a barcalounger. He agreed. Big exhale and wavery smile. Luckily Janet agreed to go with me to pick out the hideous chair. And when we walked into the store, the clerk said "Can I help you find something?" and Rachel said "We're looking for a big ugly chair for my Daddy!" Oh geez. Janet and I picked the best of the bunch, loaded it up, and brought it home. It's an electric chair so he can recline with the push of a button. It's also a lift chair so by pushing a different button he can basically move the chair to put him in a near standing position. Technology at it's finest. At least it doesn't have cup holders.

Jim and I have been having more of the hard talks. At some point, everyone who has cancer has to determine when or if to stop treatment. And there comes a point when continuing on with treatments is foolish and cruel. The doctors and nurses have been prepping me for the hard decisions for a while now. Although we haven't made a decision to stop treatment, we are at a point where I question whether or not continuing on with treatment is prudent. Dragging someone to more appointments than they can handle reflects selfishness on the part of the family - not caring.

For the last several months, before every treatment I've tried to remind Jim that he only has to do the treatments he wants to do. He can stop at any time, or we can try other options if something makes him uncomfortable. We've worked hard to find every available treatment avenue so that he can have as many choices open to him as possible.

Truthfully, if Jim wasn't so thin, it would be easier to drag him to more appointments. Before he didn't look like he had cancer. Now he looks frail and I dread inflicting any kind of discomfort on him. Throughout this process, the two hardest things have been watching Jim experience any kind of pain or discomfort; and, the changes in our relationship.

We can hope that some of the discomfort he's experiencing is the microspheres at work. But it takes 60 - 90 days to have the best picture of what the microspheres are doing. And it takes around 6 weeks for the liver to repair itself. So even if the microspheres are at work, I don't know that we're going to get immediate results. He's got an appointment in Chicago the first week in September to determine the next steps with the microspheres. At this point I'm not sure whether or not Jim will keep that appointment - we'll see how he feels when we get closer to the date.

I don't know where we go from here. He has two appointments this week - one to drain the fluid in his abdomen again. The second is for the stent to help keep his kidneys open. I think after this week we'll be better able to gauge our next steps and determine how many or which appointments he wants to keep.

Please keep us in your prayers. Please pray for our miracle. Please pray for peace of mind, for healing, and for the grace to make the best decisions for Jim's health and well being. I wish I had better news to report. I wish that hearing Lola had truly meant hearing "NED". I wish he'd get better. I wish we never had to deal with cancer. I wish, I wish, I wish.