This blog is for Jim Marventano's family and friends to review his status and updates while he goes through treatment for Stage IV Colon Cancer. We can beat it together!

Wednesday, December 20, 2006

December 20, 2006 - Feeling Pretty Good!

Well it's a good day for Jim. He got chemo on Monday, and just got the pump out at 1:30 today. He's feeling pretty good. He slept a lot of the day yesterday, and although he's tired today, he's not nauseated. We are all thankful for that. Tomorrow is the tough day, but we have a lot of excitement going on with everyone coming in for Christmas.

My friend Alvida agreed to babysit BOTH kids tomorrow while I go to the airport and pick up Jim's folks, Aunt and Uncle, and my brother. We're doing a caravan up to my parents' house - about a 4 hour drive. Okay, a 5 hour drive since Jake likes to stop every 20 minutes. You know: he's been screaming his head off for 20 miles, we finally find a place to pull over, we get him out of the car and he looks at us like, "what? I just wanted to be held." Patience, patience, patience. Got any for sale?

I'm glad to see Jim feeling a little better and more able to manage the side effects. He doesn't like wearing the pump for several reasons:

1. Sometimes when he gets up at night, he forgets that the pump is hanging on the bed post. So he starts walking until the pump lines pull him back like he's on a leash. Ouch. He says it doesn't hurt but...

2. He's not really jazzed about showering while wearing the pump because of all the cords. He has to hang the pump on a hook outside the shower and it's a pain.

3. Anyone who knows Jim knows he's HAIRY. They have to use LOTS OF TAPE to protect the needle and keep it in the port while he wears the pump. If he forgets to shave his chest, when they pull the tape off it's like waxing, only less sticky so it hurts even more.

These are all things you don't think of when you think about cancer treatment. You picture chemo, snip snap, go home and you're done. You picture being sick at home, fatigue, lots of meds...but you never picture the inconvenience of wearing a pump and forgetting that it's hanging on the bedpost. I think it's some of the little things that end up getting on Jim's nerves. Annoyances in what could be an otherwise normal day.

He's upstairs showering himself silly with no pump on. He'll probably be in the shower for the next 2 hours. ;)

Thanks for all your prayers and cards. They mean so much. We wish everyone a very happy and safe holiday. Next time we blog will most likely be in the new year! New Year's Resolution: Slay the cancer dragon. We will beat it.

Saturday, December 16, 2006

December 16 - The Funniest Card

Hi everyone-

I thought you might like to know where we are in the card count. We're at 602 cards!!!! Please don't stop sending cards...we'd love to pass the challenge on to someone else at some point. I personally think Harriett Rustan (who actually received around 628 cards) must have known that Jim was up to the task. Some newly diagnosed people just don't seem up to it, which is understandable.

Jim loves getting the cards. I bring all the cards in and he makes a beeline for the pile every afternoon. Some of the cards are very touching. It's truly inspiring to know how many people are thinking of and praying for us. Some of the cards are very funny - and he really laughs hard. But so far, it's going to be tough to top our funniest card winner. It's from Julia and Tilman Harig. They live in Germany - so this card's got it all: humor, distance, and multiple layers of funny, including the fact that the kid's name on the card is "Jimmy".

I believe that the cards are an enormous part of Jim's healing process. They give him something to look forward to every day. No matter how bad the day is, he knows he can look forward to the cards at the end of the day. Even if he's too tired or sick to do anything else, he can open the cards.

Our most recent surprise - the word is really out in Kohler. We got a card from a family we don't know who live only one block away. Something about it brought tears to my eyes. We also got a card from the Kohler Elementary School staff. Kohler may be the best village in the whole world. I never honestly thought we'd enjoy living in Sheboygan this much. But it is just fun to say the word "Sheboygan", isn't it?

We're looking forward to Christmas. I am picking up my brother, Jim's parents, and Jim's Aunt and Uncle at the airport on Thursday. There are going to be 14 people at my parents' house for Christmas. It's going to be a nice Christmas. And now we can really celebrate knowing that all the tumors are SMALLER!

Wednesday, December 13, 2006

December 13, 2006 - We have shrinkage!

We have shrinkage - and not the kind that happens in cold water!

We got the call today that Jim's scan on Monday turned out well. All of his tumors have shrunk.

We do have one spot of confusion. There seems to be some discrepancy over the size of the largest tumor. Before the operation it measured at 4.5 x 5.5cm. Then at Sloane Kettering it measured at 8 x 8cm. Now it's measuring at 6 x 7cm. What we're hoping is that the tumor grew during the time when Jim could not receive treatment, but is now shrinking with chemo. Every other organ seems to be functioning normally.

We are very excited. Dr. Haid gave Jim a high-five today. He was excited, too. (Naturally we're excited that he's excited.) Dr. Haid has ordered celebration tonight, so that's what we intend to do.

We got a babysitter, and we're headed over to a bar in Sheboygan for chicken wings and french fries. Full-fat, non-organic chicken wings accompanied by full-fat, non-organic french fries dipped in burning hot oil. Ooh la la we can't wait.

Thursday, December 07, 2006

December 7, 2006 - Cancer 101

Hi everyone-

Ever wonder what someone looks like while they are receiving chemo? Well here's your chance! Pictures of Jim...on chemo. It's not as exciting as one might think, but I thought it would be helpful in case you're picturing Jim looking frail in a hospital gown. Quite the opposite in fact. He looks pretty good, doesn't he?

The Vince has a wonderful chemo atmosphere - everyone gets their own barcolounger, their own TV, and there are tons of treats for everyone. In fact, the chemo nurses asked people to bring in less treats this year and bring in decorations for their Christmas tree! When Jim goes in this afternoon to get his pump out, Rachel and I will be hanging candy canes on the Christmas tree. The tree is at the front of the room for everyone to enjoy. On Tuesday I raided the Lindt chocolate supply and I swear my jeans were tighter by the time we left. Plus I had to sneak by the nurses' station to get the chocolates - the walk of shame. A few of the times I covered my actions by getting mints for Jim. They have mints available because the saline solution they infuse with the chemo drugs smells to some of the patients. (Jim included.) You'd think it would be the chemo drugs that smell, but it's just the saline. So now you know that chemo doesn't look...clinical.

More good news in the Cancer 101 course. One of the tumor indicators in our bodies is called a CEA (carcinoembryonic antigen) level. Mine and yours is measured at a 5 or under. At Jim's diagnosis, his CEA was at 159.1. Yesterday they called from the Vince and told us that Jim's CEA is down to 75.2. Less than 1/2! Hooray! Here's the lesson in it, though. Just because his CEA level is lowered by that much doesn't mean that there's a 50% tumor reduction. There are many factors that can effect the CEA level. However; it does mean that things seem to be pointing in the right direction, which is exactly what we want to hear.

Jim isn't sick yet during this round, but he is very,very, very tired. He took a "nap" yesterday at 3:00 pm and didn't get up until 7:45 this morning. I had to wake him for his anti-nausea meds, which he was not happy about. The pump comes out today at 3:30! Needless to say, we're all excited about that.

Also in this round of treatment, Jim started his Tai Chi class. Thankfully Dr. Haid is teaching it. Jim really seemed to like it and I think he has a lot of respect for Dr. Haid. He said it was a nice class. It's a bunch of white-haireds, Dr. Haid, Jim, and another guy about 30 years old. When Jim got home he said that by the end of the session he'll be able to "kick someone's ass in slow motion". Well at least he has a sense of humor. He said that some of the moves were pretty tough, requiring balance.

Next up: reflexology and reiki. If I've got him taking tai chi, listening to Tibetan bowl chimes, and eating organic food, reflexology will be a snap. Don't you think?

In the organic food battle: Judi is bringing us organic milk from the world famous Wegman's grocery store - only $5.99 a gallon. Will my wallet (or hers for that matter?!) ever rest?

Judi and Mark are driving down to see us tomorrow. I know that will be very good for Jim. He has his first CT Scan on Monday morning at 9:45. Results come back late Tuesday or Wednesday. Please double up on prayers this weekend. We really need them. I believe we will see improvement, but Dr. Haid has already warned us that the best thing to hope for is stabilization.

Love to all!

Sunday, December 03, 2006

Hope Prevails

December 3, 2006

Well after a bit of a tough week, we recovered and rested over the weekend. Well, at least we recovered.

Today was a total renewal of spirit for two reasons:
1. I went to church alone with the kids
2. Jim went to the Jets/Packers game - and the Jets WON!!!

Today was the first time since I was 12 years old that I've ever stepped into a church completely of my own free will. In the past 11 years I've gone on occasion because I wanted to support Jim. Our pastor is currently doing a series called "The Lord our Healer", which is obviously something that is very important to me, and to Jim. However; a higher power called Jim this week in the form of tickets to the Packers game from his friend Jay. A group of guys left for Lambeau Field at 6:30 this morning. Yikes. That's dedication.

I could have easily backed out of church today. I had a plethora of reasons - Jim wasn't going to be there, it's *really* cold in Wisconsin right now, the kids were/are tired, and so am I. But truthfully I never really gave it a second thought - I wanted to hear the end of the series. With or without Jim. So off we marched - and I'm glad I went. The end of the series focused on Living in Divine Health with four factors affecting health: attitude, nutrition, hygiene, and exercise. One of the quotes in today's bulletin was:
"Your salvation and relationship with God isn't dependent on your diet - but your quality of life is."
I thought it was a wonderful sermon. It made me feel good about making the choice to change our diet (maybe I won't wince when I buy organic milk from now on...), but also about some of the choices we're making now or have made in the past regarding attitude and exercise. (I'd like to think hygiene was never an issue!) :) It reinforced the thought that pushed us to change our diet - are we going to keep on doing what we're doing and keep on getting what we're getting, or are we going to make changes and expect a different outcome?

We had a lovely time with some of our new friends from church last night. They hosted a pizza party...all the kids played in the basement, the guys made gourmet pizzas (on whole wheat crust no less!) and the girls chatted and drank wine. It was probably the best time I've had since Jim's diagnosis. I never once worried about how my kids were doing, whether I had to update anyone on Jim's progress, or think about anything except happy chit-chat and wine. (Although there was some pressure for me to sing. Once they found out about my musical stylings with "The Sound of Music" they were very curious to see if, in fact, my horrid voice could clear a room.)

These friends from church are a perfect example of changes we've made and how those changes effect our lives. I have rarely encountered people that I thought were put in our path for a purpose. It seems that this entire group of people were put in our path - in the right place at the right time. It started with one couple and has gradually expanded out to include 3 more. (Plus a fourth that we're still on the cusp of getting to know.) It almost seems as if they were plopped into our laps to help us with this entire scenario - each for their own attributes. These people are leading good lives. They are friendly and welcoming, they don't talk about other people, they are great with their kids...they have faith in each other, their friendships, and in the fact that Jim can beat this cancer. They are committed to their faith and to their marriages. Being with them is the best feeling. As I looked around last night, and sat with them in church this morning, I realized that this is the truest extension of how I will ever exhibit my faith. I am thankful for these friends, for being in Sheboygan (okay, I never thought I'd say that!), for being with people who care about Jim, me and our kids, and for the opportunity to make the best of a poopy situation. I'm thankful for every new day with Jim. And for the recognition that even if I've never found a match in a church before, I am now in the right place at the right time. When did I get this sentimental?

And do you know what the strange thing is? In December of last year, I said to one of the girls in the group, Susan - "Hey - do you go to a good church? We're looking for one because we think it would be good for Rachel." How ODD. I have never once in my life asked anyone about their church, let alone mentioned that we needed to go.

And the Jets won. Jim is very excited - he got to see Brett Favre play at Lambeau Field, but his favorite team won. His neuropathy didn't bother him during the game. He had a great time and he even bought himself a Packers sweatshirt. He had a good weekend, and that makes us all happy!