Drained the ascites today

Today was a relatively good day in cancerland. We've had two nausea free mornings after the TPN, which is wonderful. We're not sure what to attribute that to - but we changed his anti-nausea routine and he stopped taking one of his antibiotics. So hopefully one of those two things is what fixed it.

Jim had the ascites drained from his abdomen, and they took off a liter and a half of fluid. That was enough to bring down swelling and make it easier for him to breathe. The nurses were so awesome today. They really made him feel good. And one of the oncology nurses that we truly love came and visited and talked to us for quite a while.

Jim has the stent put in tomorrow. It's a slightly more complicated procedure than today's, so we'll be at the hospital for a bit longer because they have to use conscious sedation. When he has the ascites drained he takes a nap while they do it and they just give him a local. He hasn't been responding very well to conscious sedation - it's been making him nauseated. But he's only experienced that at Northwestern, so we're hoping that they just have the right anesthesia mix for him in Sheboygan, since he's never experienced nausea here.

Jim was feeling well enough to read Rachel a short story tonight. That made us all happy. Rachel was delighted. It's nice to get to see Jim doing things with the kids - even something as simple as reading a story means a lot to the kids. Of course at this point we can't let Jake get too near Jim because he's going through a biting and hitting stage and he doesn't seem to know his own strength. This kid is a handful. He's just like his father. Smart, cool as a cucumber, and an unparalleled wit.

We're still praying for our miracle. It seems that Jim is able to go longer between pain medications right now, so my brain is working a mile a minute wondering if perhaps the microspheres really are at work and giving him some pain relief. If that's the case he may feel up to making the trip to Chicago, which would be exciting.

Everything is so...crazy. Cancer changes all our plans. Even the very shortest term plans. But you know what? If I have to change my plan every 30 minutes for the rest of my life so we can keep Jim healthy, by gosh I'll do it.

Sometimes I feel desperate and I want to squeeze out as much time as I can with him. Sometimes I feel good and I know that we didn't waste any time in the 12 years we've been married. We've packed more into our 12 years than some people pack into 50. We've had all kinds of adventures, trials, fun, made mistakes, and mostly - it's been 12 years of love. I've been blessed to have Jim in my life every day. I am blessed to spend time with him now. In many ways, I believe that my life started when I met Jim. I'd always struggled on family vacations as my parents were together and my brothers were together...and then there was me. The moment Jim came into my life I knew that he belonged. My family knew it too. Jim and I met and fell in love in the course of a few weeks. I just knew. Cancer completely stinks, and this is the most painful event of my entire life. But if I had to do it all again to spend one more day with Jim, I would. It's been the best 12 years of my life. Believe me, I'm going to try and squeeze another 12 out of him. I'm praying for that miracle.

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.

Lo-Lo-Lo Lola!

I heard it on the way home from the cabin today. I screamed so hard that I almost lost my voice. I cried for around 5 miles. I was shouting when I called Jim and my folks. My Dad couldn't even understand what I was saying because I was screaming and crying. He thought I'd been in an accident. My knees shook for a good hour after I got home. I can't believe I heard Lola. I CAN'T BELIEVE I HEARD LOLA! I am excited.

Now, of course, the over analysis begins:
Are we going to hear the words NED?
Is this a sign of good things to come?
Is this a sign we should just push on?

I hope we'll hear NED, but I also believe we're still a long way from that (barring a miracle, which I would gladly accept). So we'll take things one day at a time. We know that we have happiness in our future. Whatever that may be.

Things are looking up attitude-wise here. JIM ATE A SLICE OF PIZZA. This was his first solid food in more than 3 weeks! Jim will be going in to the hospital tomorrow for TPN. He'll be on the second floor with his beloved 2K nurses. He'll be there until Thursday or Friday. Then they'll set him up with the Visiting Nurses Association - a nurse will come and hook him up to the TPN at night, and unhook him in the morning. Then she'll teach me how to do it so we can just hook him up on our own. This will last up to 4 weeks. We're aiming to get him back to a regular weight. After 4 weeks, they'll evaluate how he's doing.

FAQ:
1. Yes, he can eat while he's on the TPN, although he may not have much of an appetite since that's really giving him everything he needs.
2. We don't know why he was able to eat that slice of pizza, but we think it might be because they drained his ascites and he's possibly getting some relief from his liver.
3. They have to hospitalize him for the first couple of days of TPN because they want to monitor things like his insulin and glucose levels.
4. This is not a feeding tube. This is intravenous feeding - the nutrition goes through his veins, not to his stomach. A feeding tube carries a higher risk of infection.
5. No, I'm not pregnant. Hearing Lola is a sign of good things to come, not that I'm preggo.

As I said before, many people use TPN and then go back to normal eating when they're at a normal weight. The microspheres plus the removal of the ascites could possibly give him enough relief to eat a regular diet again. That's what we're hoping for. He'll have a chance to regain his strength and decide how he wants to continue on with his fight.

Thank you for your prayers, good thoughts, and wishes. We continue to push on.

The Plan

So here's where we're at:
1. Jim and I leave for Chicago tomorrow afternoon. My Mom is going to watch the kids at our house Wednesday night and Thursday morning.
2. Jim's parents are going to meet us in Chicago tomorrow. They will stay through the procedure, stay the night in Chicago with Jim, and then bring Jim home to our house.
3. After Jim comes out of recovery from the procedure, I am leaving Chicago and driving home. I can't stay in Chicago with him because we're not supposed to sleep in the same bed for around a week.
4. I get home Thursday night, and Friday morning my mom, the kids and I are all driving to my parents' cabin.
5. Jim's parents will stay and take care of him for the week. Jim and his parents will be meeting with Dr. Haid on Monday to talk about TPN, which is the intravenous feeding. This is not a feeding tube - it's nutrition that will go right through his port. The NP told me that they had a woman receive TPN last week and she gained 8 pounds right off the bat. That's what we need.

We are nervous and excited about this procedure. I have total confidence that things will go off without a hitch. I worry about what kind of results we'll get. I worry about Jim not getting pain relief. I worry that he'll be unhappy because it's one more procedure he has to endure. They've told us that Thursday will be far easier than the angiogram day. But what's "easier" in cancer-speak?

Please pray for healing for Jim. Please pray that we'll have the confidence and grace to make it through this experience. Please pray that Jim gets some pain relief and that we find some answers through the microspheres.

Thanks for checking in on us. I'll post info about how Jim did on Thursday night or Friday morning.