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.

Procedure Went Well

Hello friends and family-

Jim's procedure went well on Thursday. The doctors were very happy, as things went off without a hitch. They also took another 2 liters of ascites out of his abdomen. We won't know the results for around 60 days. Jim is scheduled to have a scan at the beginning of September, but they aren't expecting remarkable results on the first scan.

Unfortunately Jim did not do well with the conscious sedation, and he was quite sick after the procedure. His parents are with him and they still haven't left Chicago. They were planning to leave today.

Jim has an appointment with Dr. Haid on Monday morning to discuss TPN and methods for removing the ascites buildup as it happens.

I'll report more later but I wanted to let everyone know that he's doing well, the procedure went well, and we are praying that those little microspheres are working like crazy to kill off the tumors.

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.

The Windy City

Hello friends and family!

We had a good visit to Northwestern. We went late Sunday afternoon because Jim's CT Scan was at 7:00 am on Monday morning. Although he was terrified, his scan went well . All these scans and tests don't seem like a big deal individually, but when you have to have a scan every week or every other week, it's easy to dread them. And the good news about this scan was that he didn't have to drink the contrast dye. Jim is having trouble getting anything into his colon at this point. If they'd made him drink the contrast, he probably would have gotten sick. But they did an IV contrast instead. It seems impossible that an IV would be more pleasant, but it's all perspective.

Yesterday was Jim's big day - his angiogram and dry run with the microspheres. He also had to have more than 2 hours of scans. He was under conscious sedation for everything, which means that he's awake, but he doesn't feel any pain and he typically doesn't remember anything. The angiogram went well. So well, in fact, that they had him scheduled for the actual procedure before we even made it out of Chicago.

They also drained out 5 litres of ascites (fluid) from Jim's abdomen. Monday night Jim had so much ascites that he was actually having trouble breathing because it was starting to push his lungs up. Jim actually remembers watching them drain out the ascites from his abdomen. While he was under conscious sedation. Draining that much fluid will help Jim feel better. By the time we got there he looked like he was around 5 or 6 months pregnant. But the rest of him is so thin that his belly was really obvious. He looks a lot better now - he's not nearly as distended. And I'm hoping that relief will lead him to drinking his shakes during the day so he can build his strength up.

The only disappointing news is that the Interventional Radiologist (IR), Dr. Lewandowski, found a blockage in Jim's kidney. When we heard "blockage" the first thing we thought was "cancer". But Dr. Lewandowski doesn't know what it is that's creating the blockage, so we shouldn't get ahead of ourselves. If it is cancer related, it's brand new, because Jim had that PET scan on July 12th and no less than 4 doctors have reviewed his PET scan without finding it. So I'm hoping they're going to come back and say "kidney stone" - which was my brother-in-law's idea. And a good one. Luckily Jim had his personal care team of three newly indoctrinated doctors - me, his sister, and her husband. They have to get rid of/fix the blockage in his kidney because it can cause an infection, and heaven knows we don't want that happening. I spoke with Dr. Haid today and he basically told me that we need to fix it sooner than later. Read: get it done this week or early next week. Aw, come on. To fix a blockage they can put in a stent, similar to the stents they put in one's heart arteries. The process for putting in a kidney stent is not a pretty one. You can research that on your own if you're really curious. But Dr. Haid did give us his advice on choosing one of the two methods, and we're going to follow it.

Here's the difference between a big hospital and our very own world-class medical care in Sheboygan. When Jim comes out of any sort of sedation, apparently he's a bit of a handful. Meaning he basically wakes up fighting with fists swinging. The IR nurses here in Sheboygan teased him and said he was "cute" and "feisty". The IR nurses at Northwestern just drugged him until he passed out. I guess at a big hospital they have so many patients that they can't cater to anyone, but all the drugs they gave him made him really, really nauseated. He was sick all evening and the bulk of today. We didn't get home until much later than we expected because he just didn't feel well enough to leave Chicago. I'll say it again: there's something to be said for small town care. We also had our first not-so-caring nurse. And no matter where we go, so far the nurses have been awesome. So it was a bit of a disappointment, especially because we've come to rely so heavily on the nurses for moral support, for comfort, and to insert an IV with a bit of a gentle hand.

So his actual microspheres procedure is on Thursday, August 9th. The longest day was actually yesterday, so he's over the hump in terms of tests and scans. We are looking forward to the 9th. I am hopeful that this will bring him some pain relief, and that he'll be able to go back to solid foods after this procedure. FYI, it's not uncommon to have to do shakes or some such diet and then later return to a normal diet.

Chicago was fabulous. Northwestern Hospital is literally one block off the Miracle Mile, so we even got to do a little shopping while Jim was in his angiogram. (It was six hours long...don't look at me like that.) I had fun getting a couple of school outfits for Rachel. I love Chicago. It's a very pretty city. The hardest thing about being there is that I typically do everything with Jim. It's really hard to have fun without him. He's the first one I tell...anything. He's my best friend and I am always disappointed when I can't share something really exciting with him. Being in Chicago is a treat because it's Chicago, but it was tough because I just don't have the same kind of fun without my sweetie by my side. I keep saying it. Next year. Next year we'll hit the Windy City running.

Microspheres and Retirement

We had a successful visit at Northwestern. We met with Dr. Mulcahy, who was very direct (almost as much as Dr. Kemeny, but Kemeny is unbeatable), and who was very competent. She looked everything over, but she'd already had an entire team set up to meet us. We spent 2 hours in consult with her and her team today. I've never heard of seeing any doctor for two hours.

So, she basically said that yes, he's eligible for radiation microspheres. We're going to do a trial that enables Northwestern to use a microsphere that they believe to be the most successful. Apparently there's more than one type of microsphere. One is encased in glass, the other in a resin. When I say encased...each microsphere is 1/3 the diameter of a piece of hair, so it's not the casing they are worried about - they just use that as a distinguishing factor when explaining it to laypeople like us. So we are excited about that - it's nice that they have a choice on what to use.

We met with the Interventional Radiologist today. He looked young (in his 30s?!) but he seemed very relaxed and competent, which was good. (Not so for some of the young doctors we met at Mayo, so this was a refreshing change.) Northwestern considers themselves the leaders in radiation microspheres. I'm not sure if there's tons of data to back that up, but I liked the way they handled things. I liked meeting the Interventional Radiologist right at the beginning. And Dr. Mulcahy was clearly on top of things.

Dr. Mulcahy did manage to "tick Jim off" (thanks, Shauna!) by telling him that he'd never get rid of his cancer. (I was having a hard time explaining the word exchange with Dr. Mulcahy and my friend Shauna said it most succinctly - "So she ticked him off!") He's determined to take better care of himself, build up his strength, and put up a full-fledged kicking and screaming fight. And then we may have to do a giant conga line where we go to each doctor that told us he couldn't do it and throw bananas at them. Or something like that. I haven't thought that out completely yet.

Anyway, she was still very positive and basically said that the goal is to stabilize him. That's our goal too, so everyone's on the same page.

Next up: we go back for a scan on Friday. Then the following Monday is a big day - he gets an angiogram (An x-ray of blood vessels; the person receives an injection of dye to outline the vessels on the x-ray) on his liver. Then they actually do a trial run to see where the radiation microspheres will go in the body. They don't want random microspheres floating around, getting out of the liver, and ending up in the heart or lungs or anything like that. They said it's pretty rare but I'm glad they check.

Then, he comes home and waits until the Friday of the NEXT week, because they have to order the microspheres. Since it's radiation, it degrades the longer they let it sit around. Who knew?! So they need to order it and then get him in there to do the procedure while the microspheres are still "fresh".

Let's see...what else am I missing?

On a totally different note: Retirement, here we come.

My Uncle Tom and Aunt Tina lent us their apartment in Chicago. It's their retirement place - they'll have this one in Chicago and one near their daughter and son-in-law in South Carolina. Anyway, it was the coolest place ever. As you know, my childhood dream was to own a loft in NYC. WELL, THIS IS THAT PLACE, except in Chicago. The moment we stepped in the door, our entire retirement took shape for me. Winters in Arizona, summers in Chicago, living in a cool loft. Jim got kind of smirky and said "I knew you'd be talking about this". Because of course, now that I have the vision I can't let it go. Pretty soon I'll start badgering him "Don't you think we should get a place now? That way we can have it all ready when we retire in 25 years..."

Jim's got a tall order. First, get the radiation microspheres to get rid of the cancer in his liver. Then, do systemic chemo to get rid of the ones on his omentum. Then get the hepatic pump so we can keep him cancer-free. Then design a lot of boxes and save his customers lots of money so that he can buy me a loft in Chicago. Then we'll get the place in Arizona. Then we can retire and jet set between our-not-yet-chosen-city-in-Arizona and Chicago. Sounds like a plan, doesn't it?