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.