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.

Let go and let God

Whenever I hear the phrase "Let go and let God" I always think "what does that mean?" Well, I figured it out today.

While Janet and Jim Sr. were here, Janet said to me a few times "I don't know how you do it all". Well, I'm not doing it all. While they were here Janet ironed more than 50 pieces of clothes for us. That was the first time ironing had been done since my mother ironed the last batch of around 50. There are some things I have just had to let go of - ironing being one of them.

Today I realized that I am in desperate need of a break. We are having a tough time keeping Jim healthy. I'm having a tough time managing the kids and the dogs and the house and the medical scenario. It's hard to see Jim like this. Jim and I have gone through some seriously chubby times in our lives. Seeing him this thin is unnatural.

I finally had a meltdown today and couldn't recover. (I knew I'd eventually betray my strong facade. I turned into a crying gelatinous blob, just like I'd suspected I might.) I told Jim that I needed a break. So we called his sister and she agreed to come out and care for Jim this week while I go to my parents' cabin with the kids. I'll stay there until Sunday and then go down to be with Jim for the testing day at Northwestern. Jim's sister and her husband are going to take care of Jim, the house, and the medical scenario for the week.

I feel horrible guilt for taking a break. I feel like I'm not living up to my marriage vows. I feel like I'm deserting him. I am worried that something will happen while I'm gone. I'm worried that they'll forget to pick up his Fragmin at the drugstore. (I know Judi won't, but I'm not very rational when I'm a crying mess.) I'm worried he'll need me and I won't be here.

I feel terrible that I'm in need of such help right after Janet and Jim left. Right after my Mom left after taking care of the kids while we were at Northwestern. But when I think about it, I realize that while Jim Sr. and Janet were here, we were splitting my job among three people. Janet cared for the kids, Jim Sr. cared for the house, and I took care of Jim and did the medical stuff. And medical stuff takes some time - it sounds silly, but pharmacy runs, phone calls, appointment setting, research (I like to go into his doctor's appointments with a list of questions and be somewhat educated on the topic at hand), and talking to the insurance company all add up. It's hard to have a real phone call when the kids are screaming and ripping things apart.

This week I found out that a friend of mine committed suicide. She had a two boys, ages 3 and 18 months. I keep thinking about my friend. I know she had some pretty serious postpartum depression. My heart has been sitting in my throat since I heard the news. I think it's because of her that I finally asked for some help. I can't let myself slide any further. The kids need me to be strong, and so does Jim. I can't rally 100% any more. I can only rally to about 80%, and that's not good, because Jim can only rally to around 60%. We need better odds that that.

I'm scared that taking this break won't be enough. Or it won't fix it. But I'm also scared to stay here. I haven't had a single day where I haven't ended up yelling at Rachel in sheer frustration. I'm so warped that I've been wondering if Jake is banging on the screen door and pushing it out to tick me off. And I spend about 10% of my day fearfully checking on Jim. I stand at the bedroom door repeatedly throughout the day and make sure he's breathing. He's so thin and skeletal that it scares me.

I've been asking for more help lately. My friends Amy and Susan came over one night and organized all the paperwork on the dining room table for me. If you'd seen my dining room table...it was enough to scare a pack rat. They even organized all the medical records chronologically. Amazing. But while we were doing that I could feel my heart rising to my throat. How did I get to be this prideful? Why is asking for help so painful? Lately it seems that people offer help and I just start to cry. I don't know what to ask for. I don't want to inconvenience our friends and loved ones. And I know in my heart that I cannot ever return the favor.

My heart is still sitting in my throat but I'm hoping that will get better. I'm hoping that we can use this time to get Jim healthy and rally our spirits back to 100%. I think Jim presents better when other people are around. If his sister pushes him to drink more shakes, if she asks him to walk, if she tries to get him to eat, I think he'll be more willing to do it. It's easy to fall into a slump when it's just your family around. Sort of like the fact that I'm willing to wear my sweats at home, but I would never, ever, ever go out in public wearing anything that resembles sweatpants. Because, you know, jeans and flip-flops are so much more presentable. Hee hee.

Today I decided to open the floodgates and just let go and ask for help. It's not that I didn't let God in before...but it was sort of like Driver's Ed. I always had my foot on that brake extension in case things were getting out of control. This is me letting go and letting God take the reigns. Totally. In my life. In our house. In our medical journey. I need help. From God and from our friends. I need God to guide me on asking for help, and to give me the grace to recover this week and become a better wife and mother.

I don't know if I'll be blogging this week from my parents' house. Maybe I even need a break from the blog, although it's something I truly enjoy doing. Please pray for us. For Jim's healing, for my mental well-being, and for our kids, who are caught in the torrent but don't really understand what's going on. We need a miracle. We need healing on all sorts of levels.

FINALLY

We finally got some "good" news today. Most of the cancer is concentrated immediately around Jim's liver. It's pretty sad when that's the "good" news, but hey, we'll take what we can get.

SO, Dr. Haid, our cancer boon and guru, went over the PET scan with us today. We are very excited that most of the concentration is around the liver, because as per Dr. Kemeny's plan, we will now proceed to treat Jim's liver directly. She gave us two choices - treating the liver directly with chemotherapy, or doing the radiation microspheres. Since the microspheres aren't available at Sloan Kettering, our next choice is someplace close to home. Although treating the liver directly with chemo (called hepatic arterial infusion) is the more prevalent of the two choices, we've done chemo (albeit systemic)...and without much luck. So we're choosing to try the radiation microspheres first. We haven't done them, and we're hoping that our lucky number comes up with these little suckers.

We'd thought of going to Madison, but I started wondering last night if we wouldn't have more success in the Chicago area. After all, it's a larger concentration of people (read: a larger concentration of cancer), let alone those that travel there for treatment. So I found out that they do the radiation microspheres at Northwestern and University of Illinois, Chicago. Yee haw.

After we confirmed all the liver information with Dr. Haid, I expressed my concerns about going to Madison for the microspheres. Dr. Haid told us that he wasn't too impressed with Madison. Suddenly the list is down to two. Then Dr. Haid says "Well, I was at Northwestern for 25 years, and Dr. Al Benson is a friend of mine. Let's call him now." So, Dr. Haid made the call. Well, Al Benson is out of the office until the 25th. So they tried to give Dr. Haid the fellow's information. Dr. Haid told them that working with a fellow is completely unacceptable, it would have to be his replacement. SO we got set up with Dr. Mulcahy in the meantime. We're seeing her this Friday. At 10:00 am. Heaven sent.

We still have to call Dr. Kemeny's office tomorrow. We still need to investigate the trial at St. Luke's down in Milwaukee. And we still need to consider if we want to do the trial through Dr. Kemeny, do the trial in Milwaukee, or do traditional chemo in addition to the radiation microspheres.

We are excited. It seems that a path is forming with new possibilities. We're making a good choice by asking Dr. Haid to coordinate Jim's care. We're doing the right thing by sticking with Dr. Kemeny. And now it seems that we're being pointed in the right direction by going to Northwestern.

We need your continued prayers. Thanks, also, to those of you who have let me know you've heard Lola. I believe we are getting signs that we should press on. He might not be cured this week. He might not be cured next week. But what if he could be cured soon? That's what we're hoping for. We are painfully aware of where we are in this process, but new treatments and new directions give us hope.

Leaving for Mayo today

Hello friends. It's July 4th. A day to celebrate our freedom. Hopefully next year at this time we'll be celebrating Jim's freedom from cancer.

We leave for Mayo this afternoon. We're going to miss the Kohler fireworks with our kids. I am a little disappointed, I have to admit, but our appointments start at 7:30 am tomorrow morning. The Kohler fireworks are something to be seen. They kick things off with a Sousa concert in a bandstand. They sell cotton candy and popcorn. Every kid gets a balloon. There are hundreds and hundreds of people there. It's amazing. Like something you'd expect in a Norman Rockwell painting. Janet is going to take Rachel over to our friend's house to watch the fireworks tonight. I am glad that Rachel will be there and have some friends to hang with. Jake goes to bed at 6:30, so Jim Sr. will stay with him. Trying to bring Jake to the fireworks would be disastrous. Jake doesn't do well off his sleep schedule.

Please pray for us. We are scared. We still haven't heard anything about whether or not we can get that trial drug, and we were hoping to go to Mayo armed with that as an option. Right now we're just going to have to keep our minds open to the alternatives. I know it's all going to be okay in the end, but that doesn't relieve our fear at this point.

Tomorrow is an entire day during which Jim will be poked and prodded and have to drink contrast fluid. Please pray that he'll have the strength to get through tomorrow. Please pray that we'll find some good options and hear some good news. Please pray for us to have the grace to make it through the next couple of weeks so that we can give Jim the best treatment possible. Please pray for our family - that we can continue on this journey together.