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.

Lance Armstrong, blah blah blah

The two things that are most talked about by well meaning friends/loved ones/strangers are:
1. Homemade "cures" that worked for someones mother's brother's sister's friend, and
2. Lance Armstrong.

Don't get me wrong, Lance is awesome. But there comes a point in the cancer journey when so many people have said "Well look at Lance Armstrong" that you start thinking "ENOUGH ABOUT LANCE!" In truth, I'm guilty of holding Lance up as the cancer icon. We know he's the poster boy for advanced stage cancer. And there's most certainly a reason for that. The problem is that Lance is about the only poster boy that people have to hold up. And man, did he beat it. I read his book - it was great. That's one guy who was willing to do anything. Anything. And he did.

So here's the thing. Lance is the Advanced Stage Cancer Poster Boy (we'll acronymize (ooh, I'm going to get in trouble for making up my own words!) that long phrase to ASCPB) for several reasons, but after he's mentioned enough, you also get a little bitter and start thinking "Well Lance had all the money in the world to do treatments". True. BUT there are a lot of people who have all the money in the world, and they still don't make it. Case in point, Katie Couric's husband. Another ASCPB, but for different reasons.

It boils down to the fact that there are two reasons people survive cancer.
1. Their body responds to treatment.
2. They have the will to live.

Without the combination of BOTH those things, there's no making it through. For those of you that are about to get excited and say "Diet. Prayer. Faith. Exercise." I say yes, those fall under the category "The Will To Live". Either you're willing to make exceptional effort, or you're not. And it's okay for those that aren't. Either your body responds, or it doesn't. The scary thing, for us included, is that some people have the will to live but their body doesn't respond.

Lance Armstrong is a great ASCPB, but let's face it, he had the will to live, and his body responded to basically the first treatment they gave him. I'd love to see a ASCPB who's been down on the fritz, who has failed traditional treatment, but STILL manages to make it back. It happens all the time - the thing is, we don't see them because they don't win the Tour de France after beating cancer. Our personal ASCPB, our friend George, did that very thing (not winning the Tour de France...) he beat advanced cancer after traditional treatment failed him. HE BEAT IT. And you know what? He had the will to live. I've never seen anyone with a stronger faith. And he just kept going until he found something that worked.

This long blog is prompted by an exciting call I had with Dr. Kemeny's office today. I spoke with her clinical trial coordinator. Dr. Kemeny looked at the scan and confirmed that it's mostly in his liver, but there are some "tiny" spots outside his liver in his abdominal wall. She used the word tiny. So the message through the clinical trial coordinator was "Do the radiation microspheres, then do systemic chemo, and then do the hepatic pump".

The thing that was so exciting was what the clinical trial coordinator told me outside the actual logistics of Jim's treatment. She told me that the hepatic pump is AMAZING. She said that the drug that they administer through the hepatic pump goes crazy on liver tumors. She said that during testing, they were having trouble finding a drug that was ultra-effective through the pump, and they had this older drug just sort of laying around, so they thought "why not"? Well, the older drug was hugely successful. She told me that she's seen lots of patients whose doctor at home told them they had a few months left to live, the people found Dr. Kemeny, and lo and behold, she turned them around using the hepatic pump.

She also said "Kate, no one comes to Dr. Kemeny with early stage cancer. Almost her entire patient roster consists of people with way advanced cancer. The reason you have to wait so long in the waiting room? It's because she's keeping all these people alive. Her client roster keeps growing and growing because few of her patients don't make it." Oh boy. Never again will I complain about time spent waiting for Dr. Kemeny. I'll wait for days if she works some of that magic on Jim.

We're not going to hold Dr. Kemeny to every point of that phone conversation, but it sure would be nice if Jim was one of her success stories. Then we can make Jim a real life ASCPB. It would be really great if we could hold Jim's picture up next to Lance's and people would say "Well, enough about Lance. Did you hear about that Jim Marventano guy?"

P.S. Blog Antagonist - good question about whether or not we can do a liver transplant. That was the first question I asked when he was diagnosed. Cancer patients are typically not candidates for liver transplant because cancer can lurk elsewhere in the body. So theoretically, they could transplant and he could just have cancer all over again. Also, Jim is absolutely not a candidate because he has obvious cancer on his abdominal wall. If our new course of treatment works, Jim will possibly be eligible for a liver resection, which means they remove the half (or up to 80%) of the liver that still has disease. Only if we get rid of the cancer outside his liver. And here's something amazing - because the liver regenerates itself, he can have a resection on say, the left lobe, and then later have a resection on the right lobe. How crazy is that?

Emotional Triggers

If you don't know a lot about cancer, when the doctors are saying "You have cancer" to you or your spouse, what you hear is "You aren't going to live". From that point on, it's a frantic race to find a cure, but it's also a mental race to prepare for what you believe is the inevitable.

Truth be told, there are so many people that survive cancer. Even advanced stage cancer. And you know what? When you look at them, you can't tell that they ever had cancer. They just look like everyone else. There's no scarlet "C" emblazoned on them, although I imagine lots of newly diagnosed people would be relieved to see how many people have beat it.

In our household (as I'm sure with many others) we take on tasks that "belong" to us. I do the laundry. Jim mows the lawn. I do the cooking. Jim takes out the trash. I pump my own gas for the car and get my oil changed, but if there's something wrong with the car, Jim takes it in. It's the unwritten rule book. I've taken over most of the tasks while Jim heals, but even still, if I can't open a jar of jelly, I hand it to Jim after a couple of twists.

During the mental race to prepare for whatever the future may bring, there are different emotional triggers for us. When I learned to mow the lawn, Jim believed that I did it because I thought he wasn't going to make it. In reality I learned to use the mower because the grass was getting long and our next-door-neighbor that was cutting our grass had a quintuple bypass. Mowing the grass makes me feel like a contributor at home. I don't think I'm the world's best caretaker, but everyone wants to believe that they are helping Jim in some way.

My emotional triggers are different things...like the car seats. Children's car seats are a pain to install. The statistics for people driving around with their kids incorrectly latched are astonishing. We got to turn Jake's car seat around a few weeks ago. Jim wasn't strong enough to do it, so I tried to do it myself. It took me around 45 minutes, I was a sweaty mess, and I scratched up my knees installing the strap that goes into the cargo area. I asked Jim to come down and check my work. While on the way outside, Jim said "Did you move the straps?"

No.

Right then and there I knew I'd wasted my time. I was so angry that I had a full-out 2-year-old temper tantrum out in the driveway, complete with tears, stomping, and plenty of fist swinging. Car seats are one of those things: I don't know how to use them, and if for some reason Jim doesn't make it, I will be lost. I was so upset that I couldn't even have Jim explain to me how to fix the car seats - I just gave up and went inside.

Jim's emotional trigger is the basement. He wants the basement done in case something happens. He wants our kids to have a nice playroom, because he knows that if it doesn't get done, I can't do it myself. Jim's Dad is working on the basement this week, which is a blessing because it takes a big load off Jim's mind.

It's hard to talk about the hard things. We are having to face the reality that two traditional treatments haven't worked. But we are still hopeful that one will work in the future. We'd be fools to give up. We'd be fools to give in. Cancer will never prevail over us mentally. We are a formidable mental opponent for cancer, no matter how low we get. We have faith and we have people who lift us up when our faith gets low.

When they gave Jim his diagnosis in the hospital, the doctor (not Dr. Haid), gave a time frame on how long he thought Jim would live. My number one goal in life is to prove him wrong. He doesn't know how long Jim will live. None of us know. Mercifully, Jim doesn't remember what the doctor said, and I won't ever tell him. Who can pin a time frame on someone's life? People have come back from worse, and I hold hope that Jim can, too.

Sometimes we get depressed or an emotional trigger makes us upset. But it doesn't mean we think he won't make it. It means that I don't ever want to live a day without him here to install car seats. It means he wants to see his kids play in the new basement. It means we will push on together, striving for many more happy days when we won't be taunted by emotional triggers.

Planning ahead

When we were first married, one of our newlywed arguments was centered around Cooperstown, NY. It's a cute little town - home to the Baseball Hall of Fame, but Cooperstown is a great little town to visit even if you're not interested in baseball. On any given Saturday (pre-kids, of course), I'd wake up and say "Let's go to Cooperstown!" Jim would balk and list the many reasons why we couldn't jump in the car and go. The primary reason being that he refused to do a spur-of-the-moment three hour drive. What if we got tired? Where would we stay? The car didn't have enough gas, so on and so forth. My argument was that we only live once (kid-free at that) and a three hour drive was a ridiculous barrier to fun. We never went.

Since then Jim has managed to loosen up a bit, and I've made less spur-of-the-moment requests. Having young kids changes the spur-of-the-moment map from cross-country to cross-the-street. Plopping Jake into a carseat for three hours to then plop him into a stroller to shop around and then plop him into a highchair for lunch isn't anyone's idea of fun.

Post-kids, I've become a real planner. I like to have planned activities so I know what to expect for the coming day. I'm not very imaginative with the kid thing, so I'm not good at creating giant origami falcons made purely from egg cartons, soap and food coloring. Mercifully I opted not to over plan our summer, which is an easy suburban/soccer mom trap.

Cancer wreaks havoc on myriad aspects of one's life, including planning anything in advance. I cannot tell you how many times I've counted the chemo weeks, then recounted the chemo weeks, then made a plan, only to have it fall through. I was notorious for my flakiness with friends before cancer, now I'm just downright annoying. I have to call people and back out at the last minute. I'll try and plan a weekend to do something, and we'll have a setback and we can't go. The chemo schedule is changing again. If we get into the trial, we have to figure that we'll be in Madison every week for three weeks after he's done his workup, and then every other week after that. But during some of those off weeks Jim might need to go in for bloodwork. If he doesn't make the trial, we have to figure out a traditional chemo schedule again.

July and August have been planning torture for me. We wanted to go to Rochester for a week for Jim's high school reunion. If he gets into the trial, we'll miss the reunion because we'll have to be in Madison for workup and/or chemo dosing. Jim has been planning on going to this reunion for at least the last six months. He's really been looking forward to it. Of course, I mapped out his previous chemo regimen so that he could have that week off. When that schedule changed, I replanned so that we could still make it within the same week. We still don't know if we can make the reunion because we don't know for sure that we're in the trial.

I traditionally spend a week at my parents' cabin with the kids during the summer. We had planned to bring our friends, the Howells, with us. Of course, I flaked out after a setback. Good thing my friend Judy and I only really got to know each other well since Jim's diagnosis. She knew I might flake. And we could move it to another week, but I looked at the calendar today, and I can't figure out when.

Rachel starts kindergarten this fall. Originally I was fretting because we were going to miss "Meet the Teacher" day at Kohler because we were going to be at Mayo. I'm not sure why I was stressed about it because the schedule has changed and we'll be at Mayo next week. I was planning on spending the last two weeks of the summer practicing getting ready for school with Rachel. Laugh if you will, but she's not a morning person and thus far I can't get her to eat a thing before 9:30 or 10:00 am. Sometimes 11:00. Obviously that's not going to fly when she starts school at 8:00 am. But the only time we'll have to travel will be the second to last week in August. That's provided the schedule for the trial works out as I've counted the weeks. That's provided he gets into the trial.

Keeping Rachel on a regular routine and providing her with the life of a normal three-year-old is of the utmost importance to me and Jim. She's got swim lessons, t-ball, and tennis lessons this summer. I am thankful for every bit for normalcy in our lives. Even if we can only plan into the next weekend.

When we hear NED, we'll plan a vacation and not change the plans. I bet Jim will be willing to do a fly-by-the-seat-of-his-pants trip to Anywhere, USA on any given weekend. We'll plop the kids in the car and not let a three hour drive be a barrier to fun. We'll look at the calendar and plan for the future like crazy. We'll plan things months and months and months in advance and relish in the monotony of a mapped out life. We'll savor the option to make or break plans on our own free will; not on what the chemo schedule dictates. Maybe we'll even go to Cooperstown. Gather ye rosebuds while ye may.

Happy Birthday to my Jakers!

Wow. This was most definitely the longest and the shortest year of our lives. On June 5, 2006, we were blessed with Jake's arrival. Actually, on June 5, 2006, Dr. Cleveland helped bless us with Jake's arrival, because I didn't want him born on June 6, 2006. (Otherwise his birthday would have been 6/6/6, which was just...too much for my fragile psyche.) His due date was June 4, and I just couldn't take a chance. Jim thought I was silly, and I knew it was silly, too, but I just couldn't get past the date. I needed to have him before the 6th. Looking back, I thank heavens every day for that silly choice. We've already established that I'm more than a little superstitious. After all, I'm basing hearing the words "NED" on hearing the song "Lola".

When I look at the pictures of Jake's birth, I realize what a pure, wonderful moment that was. We were on the second floor of Aurora Memorial Hospital. The same floor where they later gave us the bad news that Jim had cancer. You know - when you have a baby, and it's a good experience, you think you're the only ones. The only ones to experience that joy. The only ones having a baby at that moment. The only ones on that floor of the hospital. But even in Sheboygan, the hospital is a busy place. When I look at it now, I realize that on that same day, there were people on that same floor getting bad news. Cancer. On the day that we got our bad news, there were babies being born to other happy parents. Right down the hall.

In fact, before we knew what was wrong with Jim, I brought Jake down to the maternity ward so the nurse who helped deliver him could meet him again - at 3 months old. She probably thought I was nuts. But we had such a great birth experience - I just wanted her to know how much it meant to me. To all of us. It was such a perfect day, in fact, that both of my parents were also there. Even my Dad. Dad has a nervous habit of joking at the absolute most inappropriate times, but given that I had Jake without drugs, I think he was just stunned silent - he did manage to get some amazing pictures, though! My Mom was there, as the ultimate comfort, to hold my hand and put cold washcloths on my head. And Jim held my other hand. He rubbed my back. He walked with me. And he coached me through every step of the way. He was my rock. He cut the cord. He was the first to hold Jake. He's quite possibly the Best Daddy Ever.

Jim was diagnosed when Jake was only 3 months old. At the time, we honestly wondered whether or not Jim would even make it to see Jake's first birthday. A silly notion, looking back, but we had no idea what cancer meant. We thought cancer meant it was the beginning of the end. And we didn't know when the end was coming. Of course, we still don't know, but now we have enough nerve to look to the future and plan for things.

And we were just waiting for Jake to arrive. Jake is the perfect addition to our family. At only 3 months, it seemed like he'd been with us forever. He's had finesse and personality since he was an infant. He looks like his Daddy and laughs like his sister. (They both have a laugh that is strikingly similar to that of a nervous Mr. Bean.) He's a complete Ladies Man. And he loves to be funny.

I can't believe a year has come and gone. Although it was one of the worst years of our lives, it was also one of the best years of our lives. We are blessed with two beautiful, healthy children. We are blessed that Jim is able to see Jake develop and grow. We are blessed that Jake has a wonderful big sister to help him navigate the world. We are blessed to have our little family intact, to share important dates, events, and milestones.

When I look back on the last year, there are some things that I wish could have been different. Of course. But there are some things that I will cherish and hold on to forever. Jake's birth and first year were a time of true happiness and tremendous gifts. For every treatment or sickness, there has been a new milestone or small accomplishment. Jake started crawling immediately after Jim's cryoablation surgery. For every pill or pain medication, there's been a toothless, drooling smile. We've been blessed by the two greatest gifts ever. Rachel and Jake are what keep Jim going. They are the light at the end of the cancer tunnel. They are the sunshine in our days and the light of our lives. I thank heavens we had this blessed boy, born on June 5, 2006.

Happy Birthday Jim!

We made it up North! It was a nice, relaxing weekend. We got there Saturday evening. I drank a LOT of wine while we had dinner with my folks and our friend Tom, and we got to meet his friend Rhonda. Ooh la la - she was interesting and the best part of the evening!

Sunday we just rested. The weather was...not so hot. Cold and drizzly. Par for the course up North. Sunday night we celebrated Jim's 38th birthday with a cake and gifts. He got a new air tank for scuba diving and a t-shirt from my parents. The kids and I gave him a hood for his scuba suit, diving gloves, and a bag to carry his regulator (whatever that is, I just bought the stuff). We got to take a nice ride on the boat today. The sun was shining, and it was reasonably warm. My parents got up with the kids both days - luxury. Pure luxury. And my Mom made us cookies.

About a week ago I asked Jim if he'd be upset about this birthday. He snorted and told me that he'd never be upset about celebrating another birthday again. Of course he wouldn't. Every birthday he has from here on out is a reminder of how precious life is. It's a reminder that every day is a gift, every year is a blessing. It's a celebration of his life - the life he's still living. When you think about a birthday like that, it's pretty silly to get upset about getting older, isn't it?

Cancer kicks life perspective into everything. Truthfully, I'd rather not have this kind of perspective on life. It would be easier if we could still get wound up about things like the price of gas, whether or not people pick up their dogs' poop, or whether or not that guy took our parking spot. When I think about the dumb, dumb things I get riled up about, I realize that sweating the small stuff was a lifestyle for me. Cancer ripped that rug out from under me really fast.

Jim never got riled up by the same petty things that I did, but he's still gained perspective painfully fast. Celebrating a birthday and really appreciating another year of life...that's perspective. Oh, you mean it's not about the gifts and the cake? You mean celebrating birthdays every year until we're 90 isn't a God-given right? It's silly to get a little depressed about turning 30...or 40...or 50...because jeez - there's someone else waiting in line that would gladly trade to have a chance to make it to a milestone birthday.

We did a lot of talking this weekend. We did have a renewal of hope. We are both ready to put up more fight. Lots more fight. We're ready to take our newly gained life perspective and apply it toward many, many cancer-free years, where we'll celebrate birthdays focused on the true meaning. We'll continue to be thankful for all the things we're blessed with. And we'll continue to be thankful for another day. Another week. Another month. Another year. And another birthday. Happy 38th Birthday to my sweetie.

Memorial Day

Maybe we can use Memorial Day as a multi-purpose day. A day to remember our veterans, but a day for new beginnings as well. Sort of like New Year's, but with the added bonus of good weather and people already focused on an issue. Is it wrong to ask the vets to share? Would they share knowing that we're embroiled in a battle of our own? I'd be willing to share my birthday with cancer patients if it was for their good fortune.

It's a beautiful day in Wisconsin. Jim is feeling better thanks to a healthy dose of Vicodin and Ambien. He got almost a full night's sleep last night. He's off to the clinic today to get a shot of Neulastin, the drug that increases his white blood cell count.

He's very, very tired, but not sick. His stomach (abdomen, to be exact) is in a tremendous amount of pain from the chemo. He's contemplating whether or not we can make the drive up North. He's got his compression stockings. Driving up North won't change his physical symptoms, but it might help mentally.

There's something about the air up North - it's - fresher. And...better. And...smells like pine. If he decides to make the drive, we'll stop every hour and just take a break. He'll need the movement to ensure that we don't cause any more blood clots in his legs. But right now, it just seems that getting out of the house would be a mental blessing. Our house is great, but having to sit on the same couch, day after day, with his leg propped up, is not good. At least if we go up North he'd be sitting on a boat with his leg propped up.

I'm using Memorial Day to remember our vets, but also to renew my faith that Jim will be healed. We will have a miracle. We will prevail. Sometimes it's tough to admit we're sad. Admitting that we're sad almost seems like admitting that we're not winning, even if that isn't the case. Of course we'll have weeks when we're down. But today, I choose happiness. I choose hope. I choose to remember our vets, support our troops, and support the troops in our own personal journey toward victory.

The emotional rollercoaster clicks uphill...slowly

My subtitle for this post: check out Jim in his compression stockings!

At least Jim's got a sense of humor.

Madison was a fairly positive visit. We met with Dr. Holen and his student doctor (Fellow). They didn't feel that there was enough appreciable growth to take Jim off his current chemo regimen. They (the medical community) typically characterize significant growth as around 20%. They thought that his growth measured around a 5% increase, subject to opinion. CT scans are so subjective - it's not an exact science.

That being said, they were hesitant to start Jim on a trial. They would like him to continue on his current regimen and replace one of the drugs, Vectibix, with Erbitux. Vectibix is essentially a sister drug to Erbitux, but it's not as widely studied. They want to monitor his improvement over the next two months and then decide what to do.

There was a trial that I was interested in for Jim that is studying a previously approved drug in Europe. Unfortunately, the study is closed right now. They put Jim's name on a waiting list. The study is closed nationally, as the study filled up with the initial candidates - they are currently reviewing the results of the initial candidates, and then they will determine whether or not to add more people to the study. If the study opens up, they will review Jim's improvement and decide whether to take him off his current regimen and put him on the study.

Dr. Holen and his Fellow also believe that Jim's CEA level is elevated because of the cryoablation. They believe it's the tumor breaking up and sending all sorts of protien into his bloodstream. Needless to say, we were delighted to hear that. On the other hand, they were not too jazzed about cryoablation as a method for removing the tumors on Jim's liver at this point. They urged us to consult with them the next time we are recommended for cryoablation.

So, that's the tall and the short of it. We didn't go there and get horrible news. We didn't go there and hear "No Evidence of Disease", but what we did hear was "Stay the course. You can do this. And there are still other options." We left feeling a little lighter. We will continue to go to other hospitals for consultations. We're working on our appointments at Mayo and Sloan Kettering, as well as considering other places. We have HOPE.