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!

Monday, January 29, 2007

The cards make me laugh, You make me smile!

OK- It's Jim writing this time so don't expect a literary work of art. The creative writing is Kate's forte. For me it would be more of a headless angel (see her post below).

I was looking at the side entries and stats (most cards, funniest cards, etc.) and realized that if we included all of the funniest cards and listed all the folks that have sent quite a few, our side bar would turn into the main body. That fact is that funny cards come from everyone and they make me laugh - all of them.

Consistency is truly a trait many of you carry. Like clockwork cards come in from...
Ted and Tonia Dandro
Bill and Debbie Marventano
Scott and Wendy Hanwell (and their dog - Macy)
Shelly and Larry Weidig
Dave and Doris Carter
Dave and Melissa French
Kevin and Becky Ferguson (and they're busy being newlyweds)
Tom and Tina Young (and their huge network of friends)

Then there are the packages...
Every other Monday I go in for chemo to the Vince Lombardi Cancer Clinic. Kate usually runs in and out, shuttling kids, getting me lunch, paying bills, etc) ALWAYS, on one of her trips in she brings in two boxes - One from my sister, Judi Kling (Judester) and one from my friend Tom Macak (Treble Hook). Makes that day a lot more bearable and really gives me something to look forward to other than having chemicals dumped into my body (not fun).

Kate has been the biggest support. A care taker's role is the truest of tests of character and strength. She has passed with flying colors. I love you , Kate.

So now my challenge was to exceed 628 cards. I never thought in a million years I'd be able to accomplish that. I thought - maybe 200. We are at 966 with a pile on the dining room table that will surely put me over 1000. Your generosity and acts of caring really fill my heart - You all make me smile!

Labels: ,

The Headless Angel

When Jim and I were first married, we both took continuing ed classes - he took "Repairing small engines", during which he fixed an entire snowblower, and I took a stained glass class. I am the sort of person that goes gung-ho on everything for about 6 weeks. And then...that's it. After experimenting with a thoroughly enjoyable hobby, I insisted that I need an entire stained glass studio. Jim sort of snorted and told me to hold my horses. Our last project in Stained Glass class was creating an angel. I got all the way to the head, and I guess my internal timer went off (around 6 weeks of classes) and I stopped my angel. Years later, we found my headless angel and Jim laughed himself to tears.

So the running joke in our house is about headless angels. It's pretty common to say "this isn't going to be another headless angel, is it?" When Jim wanted to get scuba certified (which, by the way, is a very expensive hobby), the first thing I said was "please don't let this be your headless angel."

Boy was I wrong! What started off as a potential headless angel has exploded into a full-on obsession, complete with the purchase of two scuba suits (on my Dad's part - Mom's not too jazzed), compasses, knives, neon dive lights from my brother, and a bevy of other things. Jim spends most nights on the Web looking up potential dive sites, planning next week's Mexico dives, and perusing websites for shipwrecks in the Great Lakes. Not to mention the endless phone calls about diving - he spends a lot of time chatting it up on the phone. He's like a teenage girl.

Jim's friend Tom, also a diver, sends a care package for Jim every single treatment. Today's gift was a very generous dry bag for Jim's dives. You can probably figure out from the name what a dry bag is supposed to do. Jim was delighted. In the world of headless angels, Tom has officially put the halo over the angel's head. I get the sneaking suspicion that Jim's silent thought is "nanny-nanny-boo-boo". And he's on the phone again, calling Tom, to talk about...diving.

Even if this whole diving thing turns out to be a headless angel (which I don't think it is), it's giving Jim something to look forward to. He's making plans, having fun, and working toward some really interesting trips.

I don't think he's going to be as sick this round. Treatment went well today. He's not nauseated yet, which is a good sign. We're mall walking tomorrow. And he'll be sitting in the warm Mexican sun in eight days. It's good to have something to look forward to - whether it be a vacation, spending time with family, reading a good book, woodworking, or creating a new headless angel.

Labels: , , ,

Thursday, January 25, 2007

Update on The Gambler

Lest I get too sentimental, Rachel asked me for "The Monkey Song" today.
I went through almost every song on the CD before getting to The Gambler. I finally figured out what she meant:

"You never count your MONKEY, while you're sittin' at the table
There'll be time enough for countin' when the dealin's done."

I guess it's all perspective, isn't it? That'll teach me not to read too much into The Gambler ever again.

Labels: ,

Wednesday, January 24, 2007

The Gambler

When I left my job in 2005, a friend made me a CD with all sorts of songs about change. One of them is The Gambler. I've been listening to this CD since the day I received it, and never once has The Gambler choked me up. Yesterday I was a wreckage zone listening to The Gambler. Yep, I'm referring to the Kenny Rogers song. You might be sitting there confused (much as I was) about why I would get choked up over The Gambler, for heaven's sake.

The lyrics to The Gambler:
You got to know when to hold 'em, know when to fold 'em,
Know when to walk away and know when to run.
You never count your money when youre sittin' at the table.
There'll be time enough for countin' when the dealin's done.

Now every gambler knows that the secret to survivin'
Is knowing what to throw away and knowing what to keep.
cause every hand's a winner and every hand's a loser,
And the best that you can hope for is to die in your sleep.

So I got to thinking - in previous years, Jim and I have pretty much known when to hold 'em and when to fold 'em. But what in the world are we supposed to do with this hand? Let me tell you that we were not expecting the cancer card. If every hand's a winner, and every hand's a loser, then we have to stay in, bluff to the end, and pull an ace out of somewhere. We can turn this hand into a winner. I just know it.

It's not like we've made a series of stellar choices over the years, but I think we've made some pretty big leaps of faith. We've bluffed our way through a few tough times. We've done all sorts of fun things, traveled all over the world, and we took probably the biggest gamble of our lives - having kids. Each time, we've come out ahead. Sometimes I worry - when will it catch up with us? Are we just running three seconds ahead of disaster or can we bluff our way out of this one, too?

In 11 years of marriage, I don't think we've accumulated even an ante's worth of regret. Looking back, we didn't say no to any opportunity that could have resulted in a positive experience for us. If the best that we can hope for is to die in our sleep (as the lyrics indicate), then that's what I want. But I don't want Jim dying in his sleep until he's 90. Or me for that matter! I want him to have the chance to have more, play another hand, and see this game through to the very end. I hate the feeling of scrambling to fix things. Where will we get that ace? We're partners. I want us walking (or running, as the case may be) from the table together.

Sigh. I don't think we're supposed to be reading so much into The Gambler. Double down on 11. Oh no, that's blackjack.


Sunday, January 21, 2007

If you're too sick to go to school, then you're too sick to play outside

Or at least that's what our mothers told us. So I have to admit I felt a little guilt when we skipped church today. Not only did we skip church, but we then went out sledding on Kohler's picturesque little sledding hill. We just woke up and it was one of those mornings. We stayed out "late" last night (midnight! We are NUTS!) for a round-robin holiday party. When we got up the snow was falling, and it just seemed like the kind of day to hunker down and be a family. So that's what we did. I know we should have picked it up and been a family at church, but whatever Jim says goes, so we stayed home.

After sledding we saw one of our favorite nurses, Chris, from Jim's stay this fall at Memorial Hospital. She happened to be out sledding with her family. It made my day to see her. Jim was delighted. It's so funny how a solitary event brings you into contact with so many people. If Jim hadn't had cancer, we would have just walked by her on the sledding hill, never knowing that we were walking by a truly special soul. It just happens like that. You walk by people every day and never know what they're about. Of course you can't just stop random people on the street and introduce yourself, lest people think you're a complete loon, but at the same time it makes me wonder how many wonderful people we miss in our daily activities. I certainly would be willing to give up meeting the 2K nurses from the hospital if we could trade in Jim's cancer, but since that isn't an option, it seems like getting to know some of these people makes the pain less painful.

After seeing Chris, we went to our friends' house for hot cocoa. Friends from church. Of course, they made it to church. Oopsies. Well, in any event, we had a lovely afternoon and I got to drink tea with two friends that are very dear people. See above - I don't know that I would have had the opportunity to get so close with these women if we hadn't joined this church...Jim's cancer drove us into the church scenario. When I read articles by cancer survivors that tout the benefits of cancer, I silently wonder if the chemo has driven these people off the deep end. But when I look at the big picture...the big, big, big picture...I realize that indeed, we've been blessed by new relationships, new friendships, a new relationship with God (me - Jim always had it), a deeper appreciation for each other and our kids, and for everything that is so special in everyday life - snow, the sound of a shovel scraping snow, the happy screams as kids fly down the hill on their sleds, chocolate chip cookies, the taste of hot cocoa, and having people with whom to enjoy the cocoa. Cancer sucks, but we are truly lucky people.

Labels: , ,

Wednesday, January 17, 2007

For Maureen

Doesn't it seem like some people say things at just the right time? Over the last week I've heard from several people who've mentioned that they read the blog almost every day. My friend Maureen told me that it's part of her morning routine. Hearing that is enough to keep me going. True, I write the blog in part for myself. It's theraputic. But I also write the blog because I hope to update people on Jim's chemo. I sometimes get to wondering if people are actually reading it.

This is Joan (on the left) and Brenda (on the right). I can't explain the hats ... except ... they are Joan and Brenda, and if they want to wear hats like that, whether it be for a picture or dinner with the President, then they are allowed. Joan actually gave Brenda a pair of reindeer antlers with jingle bells on them at Christmas, and Brenda wore them all day and said things like "are you looking at my rack?" - funny.

So, here's my theory (for those of you who haven't already heard it). I think that Jim gets sick on the phases where he's less active. Sitting around and "resting" is contrary to everything that Jim is about. Mentally and physically, he's just not that guy. Even on the best of days, he can't sit through an entire Jets game. It's just not in his nature. He gets impatient and has to get up and DO something. So my theory is this: since he's unaccustomed to so much sitting, on the treatments where he does try to rest, the chemo and his chi are "pooling". He suffers from sitting around - mentally and physically. I think movement is what helps him feel less sick. Case in point: the treatment at Christmas. He had a treatment the week before Christmas, but because we had so many relatives coming into town, he was active. And he wasn't sick.

So this week, we've tested my theory. Yesterday I made Jim MALL WALK. Laugh if you will. (Okay, get it out...) It was me, Jim, and every white-haired in the Sheboygan area. The golf courses are covered with snow - it was me, Jim, and a lot of white-haireds. But he made it. He didn't get sick yesterday. In fact, he felt well enough to carry a lot of books upstairs for the new bookshelves he built for me. Now, that's not to say that he hasn't been sick - he has. He got sick before he left to have the pump removed today. And he got sick when he got home. BUT, on the sickness scale, he rated the nausea at a 3 this time, as opposed to a rating of 8 the last time. That's a pretty significant improvement. I hope my theory is right.

Maureen asked me to clarify a few things in the blog: (it's good to get feedback, by the way...)

1. The port is under Jim's skin. It's implanted through an outpatient surgical procedure. None of the port sticks out. The port has a membrane in the center of it, and the nurses can feel the membrane through his skin. That's how they know where to stick the chemo needle. When he's finished with chemo, they take the needle out and the membrane and his skin reseal. The port has a long skinny tube that is implanted in one of his veins that goes directly to his heart.

2. When Jim sits for chemo at the Vince, he gets three drugs: Avastin, which is the strongest drug; Oxaliplatin, which is the one that tends to cause neuropathy; and Leukovorin, which is a chemo enhancer. When he's done with those three drugs (when the IV bags are empty), they hook up a pump.

3. The pump is an IV bag of 5-FU (another chemo drug) that administers "shots" of chemo over a 46 hour period. The IV bag is in a black fanny pack. Most people don't even know that he's wearing it because he wears a big shirt over it. (Or they just think he's a giant dork for wearing a fanny pack...) The pump is hooked in through his port.

4. When they access the port to give him his chemo while he sits at the Vince, they use a single needle with a tube hanging off it that has splitters. That's how they administer the hanging IVs while he sits. When they put the pump on, they unhook the other IVs and hook up the pump IV. The pump IV has a tube that's about 3 feet long that goes from the fanny pack into the needle in Jim's chest. That's why he can hang the pump on the bedpost - it's a long cord, and the needle is taped into Jim's chest with a TON of gauze and tape.

5. When they remove the pump, they unhook the IV, flush out the port, and remove the needle. And then he's done until the next round of chemo. They have to flush out the port with saline so that blood clots don't form around the port.

Still have questions about how the port or pump work? Write me an email.

So, Jim got the pump out today. He's feeling better tonight. He had tai chi last night. He felt pretty good after that. And he got Joan for taking out the pump. Lucky day.

Monday, January 15, 2007

It's going to be a better run

It's a chemo day. Sheboygan got around 5 inches of snow last night, and oddly enough, that seemed to calm Jim. The rest of the free world would rather be in Phoenix, but not Jim. He's perfectly content in the cold and snow.

Jim went to chemo on his own this morning. He had a good appointment with Dr. Haid, and then they got him started on his chemo. It was a quiet day at the Vince. There were only 4 seats filled, which is unusual. Rachel, Jake and I brought Jim lunch at around 11:45 and stayed until around 2:30.

Right when we walked in I could see that Jim was doing better than he did the last time. Last time when I got there he wasn't looking so good - sitting there sort of green. This time he looked totally normal. I was thankful for that. Since there were so few people, Jim got LOTS of attention from Brenda today, which is good for him. Brenda is one of those people that you really look forward to seeing...even under these circumstances. She's a riot and she really makes the chemo bearable. (Or so I imagine, as I'm not the one who has to do the chemo...)

There are around 6 chemo nurses, but so far we've really only had 2 of the chemo nurses treat Jim - Brenda and Joan. It's silly how you get to feeling kind of possessive. I start to think about it before we go - "are we going to get Brenda or Joan? I only want Brenda or Joan. I hope Brenda and Joan are there today." It's not like the other nurses aren't awesome - they are. But Brenda and Joan are...ours. Give me a few more months and I'll get jealous when they help other patients. ;)

The clock starts now. He's got the pump on. He'll be getting the pump out at around 1:00 on Wednesday. I hope it's Joan or Brenda.

Friday, January 12, 2007

Called for a recount - no hanging chads, we swear


In our wildest dreams, we never expected that he'd receive so many cards. Jim's heard from people all over the country, in other countries, and right in our own backyard. As long as I live, I'll never forget the generosity that people have shown us. We've received cards from schools, church groups, relatives, relatives of relatives, friends, friends of friends, pets of friends, sorority sisters, and people we can't figure out how they found out.

Jim's father recently wrote to one of the little local papers, The Sheboygan Sun. Because of that article, we've heard from the hospital nurses, friends, and other colon cancer survivors that live in Sheboygan.

How will we ever thank the community?
How will we ever repay the relatives and friends that have given us so much?
How will we ever thank all the people who took a moment to pray for us and send us a card?
These are questions I ask myself every day. I wish I could write to everyone that has sent us a card, said a prayer, babysat, cooked a meal, or called. People have reached out to us in a plethora of ways.

Here's the article that Jim's Dad wrote to the paper. I think he sums it up best when he notes that he believes the reason we were meant to move to this community was for the wonderful support network and quality of care. I believe we can beat it.

A Big Thank You to the Community

Early this fall my son at 37 years old, who is now living in Kohler, was diagnosed with a stage 4 colon cancer. A young father, wife Kate, and two young children Rachel, age 3, and Jake, 4 months. Questions and concerns raced through my mind. Cancer, that dreaded word. Why him, why us, what about the kids, what next?

Jim and Kate moved from the Atlanta area to Kohler, Wisconsin, late last year. Where is Kohler? What is Sheboygan? How do I get there from Rochester, New York, conveniently? Before I could hop on a direct flight on AirTran from Rochester to Atlanta relatively cheaply, now what? Then the “Cancer”. The phone call... the plans, how do we get to Kohler quickly, let’s drive, we need a car there to go to and from the hospital.

We arrived at the Sheboygan Hospital and were so pleased with the care and concern the nursing staff exhibited during his operation and stay. The reports he has given us of the concern for his well-being by the VLCC staff. The Kohler community and their support of Jim and his family. The Lord moves in mysterious ways and now I know the reason that they moved, that God knew for Jim to beat his cancer he was sent to a place that would provide that support. Jim has had 6 weeks of extensive chemo treatments with a lot more to go but the latest report is that the tumors have started to shrink.

Thank you Kohler and Sheboygan for your support for my son.

Jim Marventano
West Henrietta, N.Y.

Thursday, January 11, 2007

January 11, 2007 - Acupuncture - Nausea relief is NOT just a needle away

Well, we tried. During one of Jim's worst days I made an appointment for him with an acupuncturist. Jim was so weak and sick that he actually agreed to go. I'd read an article that said that acupuncture could be as effective as one of the most popular anti-nausea drugs. Maybe over time. But we're here to tell ya, there's no immediate relief.

It was a 2 hour appointment, so I thought "Great! 2 hours of relaxing and working on the nausea - this is perfect!" Actually, it was 1 1/2 hours of the acupuncturist blathering on about himself and trying to sell Jim bottled magic mushrooms. He only got 1/2 hour of actual acupuncture. I was really upset when I heard that. Poor Jim had to sit there, sick as a dog, listening to Mr. Ponytail Guy talk about himself. Uh, okay. Perhaps Mr. Ponytail Guy chould have assessed the situation and just chopped the appointment down a bit.

Jim got no relief for his symptoms. The humorous thing is that the guy asked him "Do you feel any different?" When Jim responded in the negative, Mr. Ponytail said "Well, let me know how you feel after a few days." In a few days?! In a few days the chemo will be winding down anyway, buddy. He'll be feeling fine.

I guess the important thing is that we tried it. Now we know. I imagine that acupuncture really works when you use it consistently. However we were very disappointed to find that it doesn't work right away.

Jim felt better by Sunday. Pastor Kirby did a nice prayer for us, and I think Jim really felt better after that. It was a relief to see Pastor Kirby and have the prayer after Jim's long week. Also on the healing plate: Jim had Tai Chi on Tuesday. I know he really enjoyed that. Seeing Dr. Haid is a very soothing experience for Jim, whether it be at the Vince or at Tai Chi.

There were a lot of factors that went into Jim's nausea this last week. The low after coming off Christmas. The realization that everyday life with cancer had to begin again. Not eating and drinking quite properly before, during, and after chemo. Figuring out what to do about New York. And finding out that now we only get to see Dr. Haid once a month instead of on every visit. Experimenting with his Compazine (one of his anti-nausea drugs - he doesn't like it because it makes his chest feel funny). I think the extra nausea was the culmination of a series of events that snowballed into sickness.

Also, ever the optimist, Jim believes that he's the guy that won't get sick from the chemo. I'm not sure why, but his expectation is that he won't feel anything at all. He gets annoyed with fatigue. He's disappointed when he gets sick. When I asked him WHY he thought he wouldn't get sick, he paused for a moment, looked right at me, and said "Because I'm me." And that's the very reason he will beat it.

Thursday, January 04, 2007

January 4, 2007 - Back to Reality

Happy New Year Everyone!

We had a lovely Christmas at my parents' house - just relaxing, eating my Mother's homemade turtles, having other people hold the kids, playing high-pressure games of Jenga, and spending time with relatives. Jim was especially happy with the trip because his Mom, Dad, Aunt Shirley and Uncle John were there. Jim got to hit the trails on a snowmobile a couple of times. He also went ice fishing and took Rachel outside. The neuropathy didn't bother him at all, which was wonderful. We had almost two weeks of cancer-free bliss. At least we didn't think of it every minute of every day like we do at home.

Well, it's back to the daily grind. At least for Jim it is. He had chemo on Tuesday, pump out today. I've mentioned before how our brains can effect our bodies - this week is a perfect example of that. His last treatment was the week before Christmas. That week he felt great. He wasn't sick at all. He was a little tired, but he was so excited about everyone's arrivals and getting up to the cabin that he really wasn't negatively affected by the chemo. This week is different. He's tired and he's sick. He slept almost all day today.

Early this week we had a lot of decisions to make regarding whether or not to go back to New York for another scan and to meet with Dr. Kemeny. I'm sure she's brilliant, but the bedside manner on the people in her office is painful. There are problems with the scans. New York won't accept scans from Sheboygan, and Sheboygan is having a hard time reading the scans from New York. Most likely insurance only pays for one scan. We need to have consistent scans. So we opted to get all our scans here, and pay for scans in NY out of pocket. We are still hopeful that a liver resection is in Jim's future. In the end we decided to go to New York, albeit a week later.
Jim got two bits of good news this week.

1. Dr. Haid ordered another CEA test. Jim's CEA has gone down to 69.2 from 75.2. That happened in one month. We were delighted. We want his CEA level to be 5 or under, which indicates a normal level.

2. My Dad is the lead sales guy in his office, and because of that he won a trip to the Mayan Riviera. He asked Jim if he'd like to go. My Dad and Jim got scuba certified last summer, so they will be enjoying Mexico mainly under water. Jim got a scuba suit for Christmas. Regardless of whether they enjoy Mexico on land or in the water, I'm thrilled that Jim will be able to go on such a lovely vacation. The sunlight and time away will be good for him mentally.

Here's the difference between Sheboygan and New York. The vacation to Mexico is the same week as Jim's next scan. When they heard about the vacation in Sheboygan, they immediately scheduled his scan for the day before he gets on the plane. They also figured out how to move all his bloodwork and next chemo treatment so he could go and have fun. When I called New York, the nurse spent 30 minutes chewing me out and telling me that I was making a mistake. I didn't tell them in NY WHY I wanted to move the appointment, I just said that we needed to move it...I couldn't handle any more kvetching if they thought my reason wasn't good enough.

With the negative comes the positive. I can handle 30 minutes of being chewed out so that Jim can have fun in Mexico. AND this week I got my reward to last all of 2007. RACHEL IS POTTY TRAINED.

{Insert happy dance, or see the links at right for Manamana.}

Two days with our daughter diaper free. Life is good. There are signs everywhere. We just have to look for them. Some of the poop is literally being removed from our situation. I crack myself up!