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, November 29, 2006

Stress tests are stressful / What would we do without big sisters?

November 29, 2006

I had a hard time deciding on the title tonight. Jim's had a poopy week, and it's only Wednesday. Although it's Jim's "off" week for chemo, on Monday Dr. Haid ordered a stress test. He took the test yesterday. We found out today that the stress test results are fine. The road leading to this afternoon's results was a bit rocky.

Jim's had chest pains while wearing the pump. He describes it as the feeling of a balloon expanding in his chest. When he sits down and relaxes/rests, the feeling subsides a bit. Dr. Haid ordered the stress test based on that. I guess the trigger was that it subsides with rest. In Jim's chemo cycle, the tightness in his chest begins on Tuesday (the second day of chemo, first full day of the pump), gets worse on Wednesday, and starts to get better on Thursday or Friday, after the pump is removed. Avastin is extremely strong, and one of the side effects is that it can compromise heart function. Obviously the doctors don't want to take any chances, and it's better to have the tests.

Since Monday Jim's been completely convinced that he's on the fast track to a massive heart attack. Last night I went out for a drink with a friend. After I left Jim alone, he spent some time on the Internet researching the side effects of Avastin. Not a good idea. He called his sister, Judi, and had a bit of a meltdown. Jim's not one to lay his feelings out on the table until the load becomes unbearable. WHY? I have no idea, but I'm SO glad his sister was able to talk to him.

He had a great conversation with Judi, and he felt a lot better by the time they got off the phone. Judi is the voice of compassionate reason in this ordeal. Which leads me to the second title of this post - what would we do without big sisters? When Jim was diagnosed, Judi did a ton of research and was able to ask the doctors pertinent questions while Jim and I were still dazed. Then she did more research on vitamins and supplements, all of which Jim has incorporated into his healing regime. She sends him weekly care packages with a healthy snack, other various pick-me-ups, recipes, research, and articles. She is trying desperately to win the funniest card contest. :) In the big contest, Judi wins for best big sister, best listener, best shoulder to cry on, best voice of calming reason, and best at expressing empathy. I aspire to be such a big sister.

Let me tell ya, going out for a glass of wine to blow off steam is not very effective when you come home to find the one you love is hurting. I have spent the entire day feeling guilty and second guessing myself. Why didn't I know he was upset? Why did I leave him alone? Who needs a stupid glass of wine anyway? Maybe the reality of it was that he needed me to leave the house so he could talk to someone a little more level-headed. Maybe he felt that showing me his feelings was too much. Maybe he just needed to talk to his big sister and no one else would do. Chances are I'll never know, seeing as how Jim's not much for discussing his feelings in-depth. I would love to get him on Dr. Phil to discuss his feelings. That would be Jim's living nightmare. Besides cancer, of course.

Today Jim felt flushed and light headed. He called the Vince Lombardi Cancer Clinic, explained his symptoms, and told them that waiting until the end of the week for the results of the stress test was probably not the best option for him. Brenda, his totally awesome nurse, checked with a doctor, called back and said: "Go on over to the cardiologist's office so that they can check you over and review the results of the stress test with you."

What she meant was: "Go to the cardiologist's office because we don't have the results right here in front of us, and it's really not our expertise anyway. They can squeeze you into the schedule right now, so it's a good time to go."

What Jim heard was: "Jim, there's something seriously wrong with your stress test. Get right over to the cardiologist's office so he can break the bad news."

What the cardiologist said was: "You did a superior amount of exercise on your stress test. We took a ton of pictures and they are all clear. You have a healthy heart, and you have excellent blood pressure because you're a runner."

Needless to say, we were very relieved. It's amazing what the mind can do. Whether it's healing us or hurting us, I don't think we realize how very powerful it is. It could be that many of these symptoms are chemo related, but there's also a very strong possibility that they are stress related. Especially the tightness in his chest. He hates wearing the pump, because he dreads the days that he gets sick. We will be working full-time on stress relieving measures for Jim. The nurse practitioner Cindy, said it best tonight, "Jim, you're under more pressure than any 37-year-old should ever have to bear. We cannot even imagine the stress you must be feeling. We are working hard to make you better." Aptly put.

Being at the Vince has a very calming effect. When we showed up there after seeing the cardiologist, his nurse, the nurse practitioner, and the clinical trial coordinator came out and talked to him. These people care about their patients. I don't know how anyone in the oncology field does it. Between his sister and the caring staff at the Vince, Jim's feeling a lot better. I'd like to say that I provided some source of comfort while he was so stressed out, but truth be told, it seems that he's relying on others right now. In some aspects I'm a little jealous, in most aspects I'm happy to share the load. I guess it's not about me, is it? I just hate to see him upset. This is a total departure from our normal home life - one where I'm the emotional neurotic and he calms me down. I'm not used to seeing Jim compromised physically or mentally.

Three cheers for our friends at the Vince Lombardi Cancer Clinic and for Jim's big sister, Judi.

Also of note - today was the first day since Jim's diagnosis that he didn't receive a card in the mail. I have to do a recount, but I believe we're somewhere around the 400-450 mark.

Tuesday, November 21, 2006

November 21, 2006 - Almost done with this week

Hi everyone-

Jim's treatment is going well this week. They shortened his chemo sit time down to 2 hours yesterday, which meant he was only at the Vince from 11-5. Even though it takes all day, that's better than it has been over the last couple of phases. He has to sit at the Vince on Mondays because one of his chemo drugs, Avastin, is very strong and people can have adverse reactions to it. He seems to handle it well.

Jim's blood levels are all completely normal (hooray!), so that's great. Actually, Dr. Haid said that he looks wonderful, despite the fact that he has advanced colon cancer. To look at him, you'd never know - he's so strong and healthy looking.

Jim was tired today and took a nap. Tuesdays are normally a bit tiresome for him, and Wednesday is the sick day. We're attempting to go to my parent's house for Thanksgiving. If he's not feeling up to it, they can come down here.

I've had a harder time than Jim this week. I had a bit of a meltdown at church on Sunday. I don't know what I was thinking, but I suddenly felt very angry that this happened to Jim. You know, these things never happen to us...they always happen to "someone else". I guess this time we're the "someone else". Anyway, I want God to heal Jim. Completely. Why do some people get healed and others don't? I'm not sure, but I do know that if leading a good life and being kind to others is the criteria, then Jim should be first in the healing line. Life just isn't fair. Why can't disease strike only bad people? I'm very snappish and angry this week.

Our friends the Zilners sent us a great book called Glass Houses, written by a Stage 4 colon cancer survivor from Rochester, NY. I read the whole thing in one day. On some levels it seems that Jim is so far ahead of the game. I don't know if Jim ever doubts that he can beat it. He's so CALM. It's one of the things I love most about him. Oh, to have that kind of self-confidence! The author of Glass Houses had to get past a lot of denial and anger in order to help herself. I thought it was a very candid book. She was diagnosed at 36 years old. They gave her 5 months. She wrote the book 6 years later.

We found out yesterday that Jim gets his first CT scan the week of December 11th. We're not sure what day yet. Dr. Haid said that he'd be pleased if we just saw a stabilization of things. I'd be pleased if we saw a 50% reduction in tumor size, but I guess it's not up to me. We were sort of hoping to put it off until after Christmas, but he needs to have the scan in between chemo cycles.

The pump comes out tomorrow and then he has a blessed week and a half off. I can't wait. I hate to see him sick.

Hope everyone has a wonderful Thanksgiving.

Tuesday, November 14, 2006

Now that's customer service!

We had an interesting day in the cancer saga today. We have been using Calphalon pans coated with teflon for more than 10 years. Well, now there's some research that shows that teflon may be unsafe. Of course. Perfect.

So, after a disappointing transaction with the Calphalon Company, we exchanged a new set of Calphalon pans at Williams-Sonoma. We received wonderful service at Williams-Sonoma. They took every pan back, gave us a store credit, and were ultra-friendly and helpful while we did the exchange. They explained all the pans in the store for us. We finally decided on a set of All-Clad Stainless Steel pans - they were a bit of a compromise. Jim wanted to get regular Calphalon pans, I wanted to get the All-Clad, so we got the All-Clad Limited that looks like Calphalon. With our credit we also got several other things for the kitchen.

Honestly, I cannot remember the last time we received such excellent customer service. Williams-Sonoma will get all of our kitchen-related business for the rest of our lives. If you're in our families, prepare to receive kitchen gadgets for Christmas!

Jim is feeling great and looking great. I'll be posting more pictures soon. His blood level was a little lower this week, so they upped his blood thinner dosage. Jim also started his vitamin and supplement regime, so he's now taking more than 10 pills a day. He's a very good sport about it.

Friday, November 10, 2006

November 10, 2006 - Feeling Good Today

Hi Everyone-

Jim had a good day today. Although his days seem to be punctuated with nausea, he's doing amazingly well. He seems to be able to control some of the nausea with food. He's still on his anti-nausea medication. Last phase he just tapered down until he felt like he didn't need it - I guess he'll do that this time, too. He went to work a little late, but he worked all day today and most of the day yesterday. I am happy that he's working because he gets restless at home.

Jim's out at the store because he was craving cheese so badly that he had to go buy some. No one told us he'd act like he's pregnant! But actually a lot of the symptoms are the same - cravings, food aversions, nausea, and "chemo brain" or "prego brain"! He also hates strong smells.

Today we got proof that cards are coming in from tons and tons of sources - one of Jim's cards was signed by someone we don't know...and they mentioned that they were a friend of someone we don't know. So it must have been a friend of a friend of a friend. Crazy! But very thrilling. It's wonderful to have such a support network.

Yesterday it was 65 degrees out. We had snow tonight. Rachel and I went out and made our first snowman of the season. Scary. I cannot believe we live in Wisconsin. Jim loves it.

This winter might be a little tougher for him. One of his chemo drugs (Oxaliplatin) causes neuropathy - a tingling sensation in his hands, feet, etc. Jim is not allowed to be exposed to the cold. He has to get into a warm car, he has to wear a hat, scarf and gloves all the time, and if he wants to reach into the freezer he needs to wear a glove! He also can't have anything cold to drink or eat. Too much exposure to the cold could do permanent nerve damage. He was a little sad when I went out with Rachel tonight because he couldn't go. But I reminded him that last year I wasn't able to go sledding with them because I was it's only for one season, and then he's back in the fun.

Love to everyone!

Wednesday, November 08, 2006

November 8, 2006 - Pump is out!

We went back to the Vince today and had Jim's pump detatched - he's chemo free for another week and a half! It only takes about 1/2 hour to detatch the pump. They spray saline through his port and then put a blood thinner through it so there won't be any clotting around the site of the port.

Jim is feeling 100% better than he did in his last phase of chemo. He was a little nauseated today, but not nearly as nauseated as he was last phase, and he wasn't sick at all. Needless to say we're excited about that. He's very tired this time around. Last night he fell asleep around 8:00 pm, and tonight he went to bed at 7:45 pm - just 45 minutes after Jake and Rachel went to bed.

He actually said that he's thinking of going to work tomorrow if he feels up to it. Jim's terrible habit of pushing himself too hard is going to really show through this process. He's a wonderfully motivated man, but sometimes it's really hard to get him to slow down - chemo or no chemo. He seems to resent it when I suggest that he rest or that he might be pushing too hard.

On the organic healthy-eating front, we've officially switched to organic milk. It's $5.00 for a HALF gallon, which is very difficult for me. But we're doing soy milk in cereal and oatmeal, so we're using less milk overall. Basically he should be drinking green tea and water, so at the price of organic milk, it won't be long before we phase it out completely!!!!

Hope everyone is doing well. We're getting by - my parents left today (they watch Rachel and Jake during chemo), so it's a sad time for me when they leave, but at the same time it's good to know that they are able to leave because Jim's doing well. On a happy note, Jake is 5 months old and has his first tooth! His bottom tooth appeared late last week. Even with cancer, everyday life goes on, and we have many, many happy moments at home.

Tuesday, November 07, 2006

Second Round of Chemo

Jim's second round of chemo is going well. He got to sit at the Vince Lombardi Cancer Clinic for this round of chemo rather than at the hospital. The Vince is really nice - all the patients get to sit in barcoloungers, they all have their own tvs, and it's a very friendly atmosphere. We don't know the nurses at the Vince really well yet, so ironically it's not quite as personal as chemo was at the hospital. But the nurses at the Vince are GREAT - they all give you their home phone numbers in case you need anything - 24 hours a day! These people are truly committed to their profession.

Jim's bloodwork is all normal, which is excellent. They've upped his blood thinners a little bit, but otherwise his bloodwork is that of a normal, healthy person. That's exciting because we want to keep him strong for future chemo treatments.

We had a great appointment with Dr. Haid on Monday. Jim's sister did a lot of research and prepared a wonderful document to help us determine the best vitamin and supplement regime for Jim. Dr. Haid looked over her research and made some suggestions, but on the whole he approved. So Jim will be starting a supplement regime. Dr. Haid said that Jim appears to be very healthy.

We're starting tai chi at the end of November. I also bought a Tibetan Bowls CD for Jim that his cousin recommended. It's a wonderfully relaxing CD. Jim's cousin, Lynn, works with Dr. Mitch Gaynor in NYC at Gaynor Integrative Oncology. She's a holistic nutritionist, so she's been giving us a lot of great information on making changes in his diet. Dr. Gaynor has written several books on the healing properties of sound therapy, so the Tibetan Bowls CD is good for Jim. Dave and Melissa French also sent a CD of yoga music and guided mediations, so we've been using those, too. We've also moved to an almost completely organic diet. We're eating ultra-healthy, which is great for Jim's immune system and for keeping him cancer-free in the future. Rachel isn't as jazzed about eating healthy, but she did manage to plow through a piece of salmon last night, so she's not totally against it. (Although admittedly, she'd much rather have candy!)

Jim got more cards in the mail today. I think he's up to around 188 cards now. He gets so excited about his cards. I put all the cards in a basket for him so he can look at them whenever he wants. He likes to go through them.

I'll post more tomorrow after the pump comes out. Tomorrow is our big test - Wednesday was the really "sick day" of the last treatment. Dr. Haid changed a few of his meds so hopefully he'll be feeling good.

Love to all-
Kate, Jim, Rachel and Jake

Monday, November 06, 2006

November 5, 2006 - Night before Phase II Chemo

Jim's up to 127 cards! He's delighted. Our friends Dave and Melissa French's son's *entire class* sent Jim "Get Well" cards.

Winners for the funniest cards thus far:
1. Ted and Tonia Dandrow's "You're on my mind today...everyone else is on my nerves!"
2. Aimee Cuilla's - Doctor Duck "Thoon your germth will up and quit, but till that'll feel like thit!"

Jim doesn't seem nervous about chemo tomorrow. I think he has a better understanding of what to expect.

Sunday, November 05, 2006

October 26, 2006 - First Phase of Chemo Done

Hi Everyone-

Jim has finished his first phase of chemo. We went in Monday, and he sat for 4 hours while they hooked up the IV to his pump and then ran his chemo. After he finished his IVs, they hooked up his pump. The pump is relatively small - about the size of a Walkman. He wears the pump in a fanny pack. The pump administers his chemo continuously for two days. When he wears his shirt untucked, the pump barely shows at all.

Jim's body handled the chemo really well at the hospital. He also did pretty well on Tuesday. Unfortunately, Wednesday was a pretty rough day for Jim. He was very nauseated and we were thankful to get the pump off him at the end of the day.

The best part about Wednesday was seeing the nurses at the hospital. They all came over and gave Jim hugs. They all remembered him from his hospital stay, and apparently they've been requesting him when they see his name on the chemo schedule. I know their warm welcome made Jim feel good.

Right now they are working on different combinations to lessen Jim's nausea. The doctors and the nurses all said that the days of extreme nausea after chemo are over - it's just a matter of finding the right combination of drugs that will help Jim get through it. They seem to have found a combination on Wednesday night that works pretty well for Jim. He had a better day today, although he's extremely tired.

Jim is on extremely high doses of chemo (while still appropriately measured for his body), so we are hoping that this treatment will provide significant results. He's scheduled for around 6 months of chemo. He gets to have a CT scan every 2 months so we can monitor the progress. Jim's schedule is that he'll have one week on chemo, one week off; he won't be having another treatment until November 6.

Thanks for your tremendous show of support. Jim's been challenged by another cancer survivor to beat 600 cards. Jim practically runs to the mailbox now...and his face just lights up when he gets cards. If you're inspired to send him a card, I know he'd love it. He COUNTS his cards almost every night!!!!

Love to everyone - we'll keep you updated.

love, Kate, Jim, Rachel and Jake

September 20, 2006 - Home from the Hospital

Hi Everyone!

Sorry to send out news so impersonally, but it's the easiest way to cover a lot of ground...Jim is home from the hospital!

The doctors told him he's making a wonderful recovery from his surgery - it typically takes 7-10 days to go home from a major surgery like Jim's, but he's home in 5 days. He's back to eating a normal diet.

We have received so much support from everyone - I can't begin to thank all of you enough. It just means so much to us. We love the phone calls, hospital visits, prayers, cards, phone messages, flowers, babysitting, meals, putting us in prayer circles, and everything else you've offered. It makes us feel so good, and I know it's a major factor in Jim's recovery.

Our next steps will be to have a second opinion, and then possibly a third. We are in the process of finding out if Jim is eligible for a national clinical trial that we are very excited about. It's a clinical trial that tests the benefits of two FDA approved drugs for colon cancer. If Jim is eligible to participate, he will begin chemotherapy in four weeks. If Jim is not eligible, he will begin chemotherapy in 2-3 weeks. Although we will have to wait a little longer for him to begin chemo on the trial, Jim is interested in participating in the trial to benefit future potential cancer patients - including our own children, since this is a new branch in the "family history". The reason he would have to wait a little longer to participate in the trial is because one of the chemotherapy drugs in the trial can break down the healing process from his surgery.

Obviously this is not something that we were expecting. Typically people are not tested for colon cancer until they are 50. At 37, Jim has an excellent chance for partial recovery (meaning they can treat it like a chronic disease, sort of like diabetes), and a good chance at a complete recovery. Unfortunately, since his cancer has spread (metastasized) to his liver, that puts him at Stage 4 cancer. Although this is extremely disturbing, we have reason to believe that Jim can beat it - based on the fact that his liver is still quite healthy, and the fact that Jim is extremely driven. The fact that Jim's liver is healthy means that his body can accept very aggressive chemotherapy.

Thanks so much for all of your offers to help. The things we need most at this point are babysitting and meals. For those of you who want help but live further away, we still really need phone calls, letters, and lots of support. Jim's initial chemo treatments will take approximately 6 months. Even after normal life begins (as normal as it gets with chemo), we are going to need a lot of help.

Thanks so much to everyone. We are so touched by all the offers of help and support. It just means so much to us. AND, if you call and we don't get back to you right away, it doesn't mean that we don't want to just means we're tied up at the moment. :)

Deb and Shelly - please send to the other girls in our groups. Thanks.

Thanks again - love to all -
Kate, Jim, Rachel and Jake