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.

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.

The good, the bad, and the ugly

GOOD
1. Dr. Kemeny did not disappoint. We had a great meeting with her. She came prepared with two trials that Jim qualifies for. She suggested using radiation microspheres. And she had him get a PET scan to determine if most of the cancer is concentrated on the liver.
2. If most of the cancer is concentrated on his liver, she's interested in treating the liver directly with a hepatic pump, which is placed internally at the main artery into his liver - it distributes chemo directly to the liver; or, possibly use the radiation microspheres. They don't have them at Sloan Kettering, but guess where they do have them. At Madison.
3. Dr. Kemeny noticed that Jim has ascites. Ascites is a collection of fluid in the abdomen, which doesn't sound like a big deal, but if there's enough in there, it can make things really painful. We're hoping that could explain some of Jim's abdominal pain. One of the nurses was telling me today that they drained so much fluid from one guy's abdomen that she actually realized he was quite thin - she thought he was chubby, but it was the ascites! I don't know if the PET scan will indicate how much ascites is in there, but I hope it gives us some answers.
4. We already got the PET scan done today. They'll have the results tomorrow. Luckily we got back from NYC late Wednesday night. The PET scanner only comes on Thursdays to Sheboygan, so I was able to get him a last minute appointment. Only in Sheboygan could you pull off something like that.

BAD
1. Jim has another pulmonary embolism, for heaven's sake. They wanted to hospitalize him in NYC, but when I explained that he'd already been taken off coumadin and put on another anticoagulent, they paused and told him that if he has any symptoms AT ALL, he needs to go to the emergency room and have a filter put in. When they walked into the little room in the doctor's office, they looked at Jim and said "What's up with all the blood clots?!" As you may remember, having a pulmonary embolism is extremely dangerous, and for most people, it's extremely painful - similar to having a heart attack. Jim didn't feel this one either.
2. The trials that Dr. Kemeny had to offer are in NYC. He would have to be there every other week. He's eligible for a Phase 2 trial through Dr. Kemeny, which we are excited about, but if we sign onto that trial we'll have to figure out how to get him to NYC every other week. Oy vey.
3. Jim's ankles are swelling and we're not sure why.

UGLY
1. Jim can't eat anything right now. He's having a hard time keeping food down, and having trouble with eating any quantity before it comes back up. (Sorry, that's why this is listed under ugly!)
2. Jim is losing weight, which is not good in cancer world. Losing weight can be dangerous because the body needs energy and fats to keep going through harsh treatments.
3. Jim is still in a lot of pain. We are anxious for the PET scan results and hopefully they can shed some light on his pain. Unfortunately, the pain could also be due to the tumors on his liver. Apparently liver pain can get pretty intense.

We left Sloan Kettering and Dr. Kemeny feeling heartened. Our trip to Mayo was such a bummer. The doctor was an old goat that suggested we stop treatment. Um, no. I felt like grabbing him by the lapels of his ugly tweed jacket with leather buttons and shaking him around while screaming "HE'S 38, NOT 70, YOU CRUSTY BLIND DINOSAUR!!!!!!!!!!!!" Sometimes reason gets the better of me. Shoot.

Anyway, Dr. Kemeny marched right in and said "It's not good news. You know that. Here's what I think we should do..." and proceeded to lay out the plans, as detailed above. I like a woman who knows what she's doing. (Probably because I have no idea myself!) My previous post "She's All That - And a Giant Pastrami Sandwich" is now upgraded to "She's All That - And a Giant Pastrami Sandwich and a Bag of Chips and a Diet Coke" (Coke added by my sister-in-law, a thoughtful touch, I think.)

The cancer journey is emotionally and physically exhausting. Jim is under a horrific amount of strain. He's having a hard time coping. Imagine if you had to have three scans inside the span of one week - one that makes you so radioactive that you really shouldn't be near kids or pregnant women.

We also had one of our harder talks about the future and what to do if things don't work for our benefit. We'd be stupid if we didn't talk about things. And that's just the kind of marriage we have. We talk about everything. Well, mostly I jabber on and on while Jim passively responds in an affirmative or negative. It's a crushing weight that Jim wasn't diagnosed earlier. It's not fair. He's too young. We have two little kids. Every one of our worst fears is mounting, and these are fears that we didn't even realize we could have until last September. When we drew up our wills, we thought "Well, we're just being thorough - it's not like we'll ever need these". My brain toils through the day on a 50/50 continuum. 50% of the time I'm desperately trying to figure out our next step. The other 50% is spent in prayer. (And on occasion I use 1% from one of the categories to look for Lola on the radio.)

We want to win so badly we can taste it. Literally, our lives are hanging in the balance and truth be told, we're scared out of our minds. The time in NY gave us some time to talk and come to some sort of peace with whatever happens. But believe me, we're going to be scratching and clawing and praying our way to a cancer-free life for Jim. Because he deserves it.

The Big Apple

Finally. We're headed to New York. We got our appointments today. Let's recap the mysterious series of events that I believe are taking place in order to point us in the right direction:

1. We hit rock bottom. I ask Judi to visit and help me get Jim back on track.
2. Pastor Kirby comes to visit, thereby bolstering our confidence and faith. Little did we know how much we'd need it!
3. Judi arrives. Within 15 minutes, we're on the phone with the doctor explaining the pain situation.
4. Dr. Haid orders a STAT scan.
5. Scan results are not so good. Luckily we were already at an all time low - enter the faith that Pastor Kirby helped us renew.
6. Judi helps get Jim's pain under control.
7. Jim is able to do a few activities over the weekend.
8. Judi's return flight is cancelled until Tuesday.
8. I get our appointments set with Dr. Haid, Madison and Mayo before 9:00 on Monday morning. I love technology. Sometimes.
9. We have a good meeting with Dr. Haid. He likes one of the chemo regimens that Judi and I found on the Internet. It's a possible next step.
10. Sloan Kettering finally receives one of the multiple faxes that they sent from The Vince. I get our appointments set with Sloan Kettering.
11. Judi calls this afternoon and leaves a message - she heard "Lola".

Here's something funny - when I called Sloan Kettering today, I said "Hi. This is Kate Marventano..." and the girl at the appointment desk said, "Oh, hi Kate!" Um...do you think they've heard enough from me? They know I'm the one from Wisconsin. Take a moment to consider how many patients they hear from in a single day. They are the foremost cancer hospital in the world. I'd like to think it's my charming personality that they remember, but in truth, I think they're just sick of hearing from me. They probably broke down and gave us an appointment from sheer exhaustion!

Jim was able to do a few things with us today before crashing. I was feeling sort of lonely and out-of-sorts tonight when I got a call from my life and work mentor, Kimberly. She was my technology-challenged boss at MeasureUp. (Ironic, because MeasureUp is a technology certification test preparation company.) She just called out of the blue to see how I was doing. She doesn't read the blog - she said she didn't have the address but I know the real reason is because she probably only gets on the Internet around once a month. In any case, it was exactly the call I needed.

One of the things I dread most in this journey is the lonely times at night, after I get the kids to bed and when Jim goes to bed early because he's exhausted. I typically use the time to clean, since that's about the only time I seem to have. I normally relish getting the kids to bed early, but there's the occasional night when I just sort of wander around feeling lonely. I should use the time to do something constructive, but sometimes I just can't. Despite the odd meltdown, I am holding it together fairly well throughout this whole ordeal. And meltdowns are actually more welcome in my mind than nights like this - there's nothing wrong. It's just a sinking feeling in the pit of my stomach.

SO, a distracting call is a lovely elixir that won't induce purple lips or hangover.

I wonder how long our string of good fortune will last? How long will the planets stay aligned? I'm hoping we're through the major mine field. It's our turn to have some good luck, don't you think?