Stent went well

Jim had the stent put in yesterday. It was a very successful procedure. In fact, the doctor was running behind so we actually spent more time waiting than Jim spent in surgery! The doctor said it took around 10 minutes. They did not use conscious sedation, they used general anesthesia. Jim was very happy about that. Under general anesthesia there's no chance of waking up. The anesthesiologist came in and spoke to us before the procedure and he really seemed to "get" Jim, so that was a good feeling. They decided to use general anesthesia because Jim cannot lie completely flat. He has to be propped up or he feels that he cannot get enough air in his lungs. So his recovery time was short, the nurses took great care of him, and he wasn't sick in the slightest. Yippee!

Yesterday was a busy day. I went and met with two of the nurses at The Vince who have really guided us through this whole process. I just needed to talk to people who have experience in this whole thing. I felt a lot better after talking to them. They were explaining to me that there are different stages that people go through during this whole process. I sometimes feel like people around me are crying and I'm sitting there like a stone with no emotion at all. It's not that I don't feel it, but sometimes I feel all cried out, or I think it's important to let someone else cry without me bawling, too. And sometimes I'm at peace with everything that is happening. I met with Deb and Stacy until it was time to take Jim to the hospital.

Then the procedure.

Then Rachel and I burned over to the drug store to pick up his new medications that go with the stent and some new test strips - they want me to check his blood sugar twice a day. I had gestational diabetes and I hated checking my blood sugar, but I get the impression that Jim thinks a little finger prick twice a day is the least of his worries.

After we got back from the drug store we hooked up his TPN.

And now I have a confession to make. I went to see The Bourne Ultimatum with three of my girlfriends. I asked Jim if I could go. He knows I've been dying to see it. And he told me that if he feels well enough to go see it soon, I can always go see it again. Amen to that! I haven't asked anyone to go see it with me because in my mind, it's a Date Night movie. I sort of felt embarrassed about asking anyone. My friend Judy asked me if I'd like to go and I jumped at the chance. Her husband volunteered to babysit. Now those are good people. So we invited our friends Amy and Susan and off we went! I told my mother-in-law Janet that I was leaving to get drunk on movie popcorn and Sprite. And that's just what I did.

Let me say this: Jason Bourne does not disappoint. If you're waiting for The Bourne Ultimatum to come out on video, run, don't walk, to the theater and see it on the big screen. It was AMAZING. And I truly felt blessed to have girlfriends that were willing to abdicate their own date nights in favor of seeing a Bourne fan through a potentially lonely experience. I didn't make it home until after midnight. And then Janet and I stayed up and talked until after 1:00! It was worth it. It was an exciting day and it seemed as though things went in our favor.

Jim had a rough night last night - he woke up multiple times. He didn't get much sleep at all. He slept through about 90% of today. Hopefully tonight will be a better night for him and he can recharge his batteries for tomorrow.

One of the Interventional Radiology nurses from Northwestern called me today to check up on Jim. She seemed happy with his progress and that the microspheres haven't completely wiped out his energy level. When I told her that Jim seemed to have some pain relief, she told me that was very possible because the microspheres can actually soften tumors that are pressing on other parts of the body. I was delighted. She also agreed to letting Jim have his scan here and then sending the pictures down to Northwestern if he's not up to the drive. I was happy about that - it's another option and we like to have choices.

We appreciate all the prayers, comments on the blog, cards, letters, and gifts. Thank you so very much for thinking of us and for supporting us through this journey. Even in the face of cancer, we find so many blessings to be thankful for. A friend of mine wrote and said that we should look for small miracles every day. I thought that was a wonderful sentiment - and a good way to go about the next steps in our journey. Lightening doesn't have to strike the house to cure Jim (although I'd take that, too) - perhaps our miracles are occurring, in small ways, and we need to open up to receiving them.

Drained the ascites today

Today was a relatively good day in cancerland. We've had two nausea free mornings after the TPN, which is wonderful. We're not sure what to attribute that to - but we changed his anti-nausea routine and he stopped taking one of his antibiotics. So hopefully one of those two things is what fixed it.

Jim had the ascites drained from his abdomen, and they took off a liter and a half of fluid. That was enough to bring down swelling and make it easier for him to breathe. The nurses were so awesome today. They really made him feel good. And one of the oncology nurses that we truly love came and visited and talked to us for quite a while.

Jim has the stent put in tomorrow. It's a slightly more complicated procedure than today's, so we'll be at the hospital for a bit longer because they have to use conscious sedation. When he has the ascites drained he takes a nap while they do it and they just give him a local. He hasn't been responding very well to conscious sedation - it's been making him nauseated. But he's only experienced that at Northwestern, so we're hoping that they just have the right anesthesia mix for him in Sheboygan, since he's never experienced nausea here.

Jim was feeling well enough to read Rachel a short story tonight. That made us all happy. Rachel was delighted. It's nice to get to see Jim doing things with the kids - even something as simple as reading a story means a lot to the kids. Of course at this point we can't let Jake get too near Jim because he's going through a biting and hitting stage and he doesn't seem to know his own strength. This kid is a handful. He's just like his father. Smart, cool as a cucumber, and an unparalleled wit.

We're still praying for our miracle. It seems that Jim is able to go longer between pain medications right now, so my brain is working a mile a minute wondering if perhaps the microspheres really are at work and giving him some pain relief. If that's the case he may feel up to making the trip to Chicago, which would be exciting.

Everything is so...crazy. Cancer changes all our plans. Even the very shortest term plans. But you know what? If I have to change my plan every 30 minutes for the rest of my life so we can keep Jim healthy, by gosh I'll do it.

Sometimes I feel desperate and I want to squeeze out as much time as I can with him. Sometimes I feel good and I know that we didn't waste any time in the 12 years we've been married. We've packed more into our 12 years than some people pack into 50. We've had all kinds of adventures, trials, fun, made mistakes, and mostly - it's been 12 years of love. I've been blessed to have Jim in my life every day. I am blessed to spend time with him now. In many ways, I believe that my life started when I met Jim. I'd always struggled on family vacations as my parents were together and my brothers were together...and then there was me. The moment Jim came into my life I knew that he belonged. My family knew it too. Jim and I met and fell in love in the course of a few weeks. I just knew. Cancer completely stinks, and this is the most painful event of my entire life. But if I had to do it all again to spend one more day with Jim, I would. It's been the best 12 years of my life. Believe me, I'm going to try and squeeze another 12 out of him. I'm praying for that miracle.

Let go and let God

Whenever I hear the phrase "Let go and let God" I always think "what does that mean?" Well, I figured it out today.

While Janet and Jim Sr. were here, Janet said to me a few times "I don't know how you do it all". Well, I'm not doing it all. While they were here Janet ironed more than 50 pieces of clothes for us. That was the first time ironing had been done since my mother ironed the last batch of around 50. There are some things I have just had to let go of - ironing being one of them.

Today I realized that I am in desperate need of a break. We are having a tough time keeping Jim healthy. I'm having a tough time managing the kids and the dogs and the house and the medical scenario. It's hard to see Jim like this. Jim and I have gone through some seriously chubby times in our lives. Seeing him this thin is unnatural.

I finally had a meltdown today and couldn't recover. (I knew I'd eventually betray my strong facade. I turned into a crying gelatinous blob, just like I'd suspected I might.) I told Jim that I needed a break. So we called his sister and she agreed to come out and care for Jim this week while I go to my parents' cabin with the kids. I'll stay there until Sunday and then go down to be with Jim for the testing day at Northwestern. Jim's sister and her husband are going to take care of Jim, the house, and the medical scenario for the week.

I feel horrible guilt for taking a break. I feel like I'm not living up to my marriage vows. I feel like I'm deserting him. I am worried that something will happen while I'm gone. I'm worried that they'll forget to pick up his Fragmin at the drugstore. (I know Judi won't, but I'm not very rational when I'm a crying mess.) I'm worried he'll need me and I won't be here.

I feel terrible that I'm in need of such help right after Janet and Jim left. Right after my Mom left after taking care of the kids while we were at Northwestern. But when I think about it, I realize that while Jim Sr. and Janet were here, we were splitting my job among three people. Janet cared for the kids, Jim Sr. cared for the house, and I took care of Jim and did the medical stuff. And medical stuff takes some time - it sounds silly, but pharmacy runs, phone calls, appointment setting, research (I like to go into his doctor's appointments with a list of questions and be somewhat educated on the topic at hand), and talking to the insurance company all add up. It's hard to have a real phone call when the kids are screaming and ripping things apart.

This week I found out that a friend of mine committed suicide. She had a two boys, ages 3 and 18 months. I keep thinking about my friend. I know she had some pretty serious postpartum depression. My heart has been sitting in my throat since I heard the news. I think it's because of her that I finally asked for some help. I can't let myself slide any further. The kids need me to be strong, and so does Jim. I can't rally 100% any more. I can only rally to about 80%, and that's not good, because Jim can only rally to around 60%. We need better odds that that.

I'm scared that taking this break won't be enough. Or it won't fix it. But I'm also scared to stay here. I haven't had a single day where I haven't ended up yelling at Rachel in sheer frustration. I'm so warped that I've been wondering if Jake is banging on the screen door and pushing it out to tick me off. And I spend about 10% of my day fearfully checking on Jim. I stand at the bedroom door repeatedly throughout the day and make sure he's breathing. He's so thin and skeletal that it scares me.

I've been asking for more help lately. My friends Amy and Susan came over one night and organized all the paperwork on the dining room table for me. If you'd seen my dining room table...it was enough to scare a pack rat. They even organized all the medical records chronologically. Amazing. But while we were doing that I could feel my heart rising to my throat. How did I get to be this prideful? Why is asking for help so painful? Lately it seems that people offer help and I just start to cry. I don't know what to ask for. I don't want to inconvenience our friends and loved ones. And I know in my heart that I cannot ever return the favor.

My heart is still sitting in my throat but I'm hoping that will get better. I'm hoping that we can use this time to get Jim healthy and rally our spirits back to 100%. I think Jim presents better when other people are around. If his sister pushes him to drink more shakes, if she asks him to walk, if she tries to get him to eat, I think he'll be more willing to do it. It's easy to fall into a slump when it's just your family around. Sort of like the fact that I'm willing to wear my sweats at home, but I would never, ever, ever go out in public wearing anything that resembles sweatpants. Because, you know, jeans and flip-flops are so much more presentable. Hee hee.

Today I decided to open the floodgates and just let go and ask for help. It's not that I didn't let God in before...but it was sort of like Driver's Ed. I always had my foot on that brake extension in case things were getting out of control. This is me letting go and letting God take the reigns. Totally. In my life. In our house. In our medical journey. I need help. From God and from our friends. I need God to guide me on asking for help, and to give me the grace to recover this week and become a better wife and mother.

I don't know if I'll be blogging this week from my parents' house. Maybe I even need a break from the blog, although it's something I truly enjoy doing. Please pray for us. For Jim's healing, for my mental well-being, and for our kids, who are caught in the torrent but don't really understand what's going on. We need a miracle. We need healing on all sorts of levels.

Oh, now this is funny

Linda Carter Galbato, Janet's cousin, sent me this cartoon this week. It made me laugh out loud, given the Emotional Triggers post. Thanks, Linda!

This stinks like a giant yellow lab...or two

Okay, I'm sick of writing mournful stuff. We all know he has cancer. Let's talk about something else for 10 minutes of our lives. Forgive me any spelling errors, I'm on my second glass of Fume Blanc. And boy is it good.
I'm going to set the record straight, once and for all, about the dogs. They smell. No, no, no. What I mean to say is...they smell. But they are the best dogs anyone could ever ask for. We got Palmer while we were living in Charlotte. He was a completely overwhelming puppy. We got Major (who was from the same litter...more on that later) a year later when we moved to Atlanta. Palmer is Jim's dog, Major is mine.

Categorically, Palmer is the smart one. Palmer knows all his commands. He is a blond beauty that probably would have made a great show/stud dog. Even as a very young puppy, the breeder warned us that he was going to be a handful. She was right. But boy is he pretty. It's a good thing because it makes up for the fact that on occasion, Palmer decides (and I mean that literally) to be naughty. For example, if we mistakenly leave the gate open in the yard, Palmer is the first one out. He knows he shouldn't, but he decides whether or not he will. Major is a follower. Sometimes he follows Palmer, and sometimes he tattles by sitting on the back porch and howling. Typically if I find that if Palmer has gotten out of the yard, he's not more than a block away.

Major, on the other hand, is our sweet lovable dummy. Oh, he loves to be loved. He's the smellier of the two. He's got breath that could kill a small goat. And the gas. It's unspeakable. And in this house, unspeakable gas is a rarity. See Too Much Information. Major went to a Guide Dog school straight from the litter, but he was so stupid he got kicked out. Literally. So we got him for half price. Literally. Major tempers Palmer. Palmer is high strung. Major (except when you pet him) is cool as a cucumber. Probably because he has no idea what's going on around him.

And although Major is our dumb one, he can be smart in some ways. Major cares about two things: getting lots of petting, and food. Jim built the dogs a beautiful feeding station. One bowl for each dog, with the food stored inside. It's worked out well. But we were stunned to find the top pushed open one day, with about half the food eaten. Major was bloated and happy, practically still laying on the feeding station when we discovered him. At first we thought it was our mistake - one of us had left the top open a little after feeding them. Oh no. We finally caught him pushing the top open with his snout. So then Jim put a plastic latch on the back of the feeding station to hold it closed. We used that successfully for quite a while. Then we caught Major again, stuffed to the gills. Hm. Once again, we blamed ourselves. Oh no. He'd figured out how to open the latch. NOW, we have the latch and a pin (a screw that we can easily pull out) in the top of the feeding station. Unless Major grows opposable thumbs, I doubt he'll be able to open it. Right?

Most people don't know that we have dogs. For three reasons.
1. Whenever people come over, I put the dogs in the basement. I am hyperaware that not everyone likes dogs. And therefore I refuse to inflict dogs on people that may or may not love dogs.
2. We never walk the dogs anymore. They get to play in our backyard, and sometimes I take them to the park and throw the ball to them.
3. Our dogs are not barkers. They bark if they really need to, but otherwise, pretty much keep quiet.

Before Rachel and Jake's arrival, Palmer and Major were our kids. In fact, we got Palmer and Major because I wasn't sure that I wanted kids. Palmer and Major really had the life when we moved to Atlanta. We took them to the park every single day and threw them a ball until they were so exhausted they could barely make it home. Slowly, slowly, Palmer and Major have been relegated to dog status in our house. I often feel guilt about not walking them like we used to. I felt it with the birth of each child, and I feel it now as I exude frustration when they don't move their 90 pound bodies out of my way fast enough.

Jim wants me to clarify. I do love the dogs. I truly do. They are very good dogs. They are gentle and loving and the sweetest puppies anyone will ever know. We are lucky to have them as part of our family, even if I do have to resentfully pick up dog poop on occasion.

The good, the bad, and the ugly

GOOD
1. Dr. Kemeny did not disappoint. We had a great meeting with her. She came prepared with two trials that Jim qualifies for. She suggested using radiation microspheres. And she had him get a PET scan to determine if most of the cancer is concentrated on the liver.
2. If most of the cancer is concentrated on his liver, she's interested in treating the liver directly with a hepatic pump, which is placed internally at the main artery into his liver - it distributes chemo directly to the liver; or, possibly use the radiation microspheres. They don't have them at Sloan Kettering, but guess where they do have them. At Madison.
3. Dr. Kemeny noticed that Jim has ascites. Ascites is a collection of fluid in the abdomen, which doesn't sound like a big deal, but if there's enough in there, it can make things really painful. We're hoping that could explain some of Jim's abdominal pain. One of the nurses was telling me today that they drained so much fluid from one guy's abdomen that she actually realized he was quite thin - she thought he was chubby, but it was the ascites! I don't know if the PET scan will indicate how much ascites is in there, but I hope it gives us some answers.
4. We already got the PET scan done today. They'll have the results tomorrow. Luckily we got back from NYC late Wednesday night. The PET scanner only comes on Thursdays to Sheboygan, so I was able to get him a last minute appointment. Only in Sheboygan could you pull off something like that.

BAD
1. Jim has another pulmonary embolism, for heaven's sake. They wanted to hospitalize him in NYC, but when I explained that he'd already been taken off coumadin and put on another anticoagulent, they paused and told him that if he has any symptoms AT ALL, he needs to go to the emergency room and have a filter put in. When they walked into the little room in the doctor's office, they looked at Jim and said "What's up with all the blood clots?!" As you may remember, having a pulmonary embolism is extremely dangerous, and for most people, it's extremely painful - similar to having a heart attack. Jim didn't feel this one either.
2. The trials that Dr. Kemeny had to offer are in NYC. He would have to be there every other week. He's eligible for a Phase 2 trial through Dr. Kemeny, which we are excited about, but if we sign onto that trial we'll have to figure out how to get him to NYC every other week. Oy vey.
3. Jim's ankles are swelling and we're not sure why.

UGLY
1. Jim can't eat anything right now. He's having a hard time keeping food down, and having trouble with eating any quantity before it comes back up. (Sorry, that's why this is listed under ugly!)
2. Jim is losing weight, which is not good in cancer world. Losing weight can be dangerous because the body needs energy and fats to keep going through harsh treatments.
3. Jim is still in a lot of pain. We are anxious for the PET scan results and hopefully they can shed some light on his pain. Unfortunately, the pain could also be due to the tumors on his liver. Apparently liver pain can get pretty intense.

We left Sloan Kettering and Dr. Kemeny feeling heartened. Our trip to Mayo was such a bummer. The doctor was an old goat that suggested we stop treatment. Um, no. I felt like grabbing him by the lapels of his ugly tweed jacket with leather buttons and shaking him around while screaming "HE'S 38, NOT 70, YOU CRUSTY BLIND DINOSAUR!!!!!!!!!!!!" Sometimes reason gets the better of me. Shoot.

Anyway, Dr. Kemeny marched right in and said "It's not good news. You know that. Here's what I think we should do..." and proceeded to lay out the plans, as detailed above. I like a woman who knows what she's doing. (Probably because I have no idea myself!) My previous post "She's All That - And a Giant Pastrami Sandwich" is now upgraded to "She's All That - And a Giant Pastrami Sandwich and a Bag of Chips and a Diet Coke" (Coke added by my sister-in-law, a thoughtful touch, I think.)

The cancer journey is emotionally and physically exhausting. Jim is under a horrific amount of strain. He's having a hard time coping. Imagine if you had to have three scans inside the span of one week - one that makes you so radioactive that you really shouldn't be near kids or pregnant women.

We also had one of our harder talks about the future and what to do if things don't work for our benefit. We'd be stupid if we didn't talk about things. And that's just the kind of marriage we have. We talk about everything. Well, mostly I jabber on and on while Jim passively responds in an affirmative or negative. It's a crushing weight that Jim wasn't diagnosed earlier. It's not fair. He's too young. We have two little kids. Every one of our worst fears is mounting, and these are fears that we didn't even realize we could have until last September. When we drew up our wills, we thought "Well, we're just being thorough - it's not like we'll ever need these". My brain toils through the day on a 50/50 continuum. 50% of the time I'm desperately trying to figure out our next step. The other 50% is spent in prayer. (And on occasion I use 1% from one of the categories to look for Lola on the radio.)

We want to win so badly we can taste it. Literally, our lives are hanging in the balance and truth be told, we're scared out of our minds. The time in NY gave us some time to talk and come to some sort of peace with whatever happens. But believe me, we're going to be scratching and clawing and praying our way to a cancer-free life for Jim. Because he deserves it.

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.

Leaving for Mayo today

Hello friends. It's July 4th. A day to celebrate our freedom. Hopefully next year at this time we'll be celebrating Jim's freedom from cancer.

We leave for Mayo this afternoon. We're going to miss the Kohler fireworks with our kids. I am a little disappointed, I have to admit, but our appointments start at 7:30 am tomorrow morning. The Kohler fireworks are something to be seen. They kick things off with a Sousa concert in a bandstand. They sell cotton candy and popcorn. Every kid gets a balloon. There are hundreds and hundreds of people there. It's amazing. Like something you'd expect in a Norman Rockwell painting. Janet is going to take Rachel over to our friend's house to watch the fireworks tonight. I am glad that Rachel will be there and have some friends to hang with. Jake goes to bed at 6:30, so Jim Sr. will stay with him. Trying to bring Jake to the fireworks would be disastrous. Jake doesn't do well off his sleep schedule.

Please pray for us. We are scared. We still haven't heard anything about whether or not we can get that trial drug, and we were hoping to go to Mayo armed with that as an option. Right now we're just going to have to keep our minds open to the alternatives. I know it's all going to be okay in the end, but that doesn't relieve our fear at this point.

Tomorrow is an entire day during which Jim will be poked and prodded and have to drink contrast fluid. Please pray that he'll have the strength to get through tomorrow. Please pray that we'll find some good options and hear some good news. Please pray for us to have the grace to make it through the next couple of weeks so that we can give Jim the best treatment possible. Please pray for our family - that we can continue on this journey together.

Poops

We didn't make it into the trial. There were more than 50 applications for the trial before 7:15 on Friday morning. We were the only ones submitted from Madison, but of course, we're an hour behind the East Coast, so who knows what number we were in line. There were only 19 spots. We just thought we'd be one of those 19, especially since we were on such a winning streak.

The good news: we are investigating other avenues regarding the trial drug. We still have a traditional chemotherapy we can use. And there are other trials available.

We are not discouraged.

Here's the way I figure it: those 19 people who are accepted into the trial are not Italian. They do not have the same kind of connections that we do. As my father-in-law says, there are those that are Italian and those that want to be Italian. Good thing Jim isn't Irish or we'd hand him a glass of Guinness and say "It's healing in a glass! Drink up!" (Or at the very least, drink this Jameson and afterward you won't care that you didn't get into the trial!)

For 12 years I've lamented about the fact that I voluntraily set myself up for a lifetime of people saying "First name Marven, last name Tano?" Now it's payoff time, baby.

I'm not Italian, I'm Irish (see above), but if we don't get that drug, do you think someone will find a horse head in their bed?

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.

The Big Apple

Finally. We're headed to New York. We got our appointments today. Let's recap the mysterious series of events that I believe are taking place in order to point us in the right direction:

1. We hit rock bottom. I ask Judi to visit and help me get Jim back on track.
2. Pastor Kirby comes to visit, thereby bolstering our confidence and faith. Little did we know how much we'd need it!
3. Judi arrives. Within 15 minutes, we're on the phone with the doctor explaining the pain situation.
4. Dr. Haid orders a STAT scan.
5. Scan results are not so good. Luckily we were already at an all time low - enter the faith that Pastor Kirby helped us renew.
6. Judi helps get Jim's pain under control.
7. Jim is able to do a few activities over the weekend.
8. Judi's return flight is cancelled until Tuesday.
8. I get our appointments set with Dr. Haid, Madison and Mayo before 9:00 on Monday morning. I love technology. Sometimes.
9. We have a good meeting with Dr. Haid. He likes one of the chemo regimens that Judi and I found on the Internet. It's a possible next step.
10. Sloan Kettering finally receives one of the multiple faxes that they sent from The Vince. I get our appointments set with Sloan Kettering.
11. Judi calls this afternoon and leaves a message - she heard "Lola".

Here's something funny - when I called Sloan Kettering today, I said "Hi. This is Kate Marventano..." and the girl at the appointment desk said, "Oh, hi Kate!" Um...do you think they've heard enough from me? They know I'm the one from Wisconsin. Take a moment to consider how many patients they hear from in a single day. They are the foremost cancer hospital in the world. I'd like to think it's my charming personality that they remember, but in truth, I think they're just sick of hearing from me. They probably broke down and gave us an appointment from sheer exhaustion!

Jim was able to do a few things with us today before crashing. I was feeling sort of lonely and out-of-sorts tonight when I got a call from my life and work mentor, Kimberly. She was my technology-challenged boss at MeasureUp. (Ironic, because MeasureUp is a technology certification test preparation company.) She just called out of the blue to see how I was doing. She doesn't read the blog - she said she didn't have the address but I know the real reason is because she probably only gets on the Internet around once a month. In any case, it was exactly the call I needed.

One of the things I dread most in this journey is the lonely times at night, after I get the kids to bed and when Jim goes to bed early because he's exhausted. I typically use the time to clean, since that's about the only time I seem to have. I normally relish getting the kids to bed early, but there's the occasional night when I just sort of wander around feeling lonely. I should use the time to do something constructive, but sometimes I just can't. Despite the odd meltdown, I am holding it together fairly well throughout this whole ordeal. And meltdowns are actually more welcome in my mind than nights like this - there's nothing wrong. It's just a sinking feeling in the pit of my stomach.

SO, a distracting call is a lovely elixir that won't induce purple lips or hangover.

I wonder how long our string of good fortune will last? How long will the planets stay aligned? I'm hoping we're through the major mine field. It's our turn to have some good luck, don't you think?

No where to go but up

Sorry I haven't been posting much lately. Things have been a little hairy. Flat out: we are at an emotional and physical low. This is the lowest we've been since diagnosis. Jim is in excruciating pain. The pain in his stomach is really taking a toll on his quality of life. He's not moving around a whole lot. He told me that he can't ever move without it hurting anymore.

We're not sure what's causing the stomach pain, but we think it's the chemo. Reason being that the longer he has a break from chemo, the less stomach pain he has. Of course at this point, he won't be getting a break until the last week of August. There's a lot hinging on the last week of August - during that break week we visit Mayo and hopefully Sloan Kettering. Needless to say, that's a lot of travel, but doctor's offices won't do a scan the same week he receives chemo, and he's getting some form of treatment every single week until then.

Because he's in so much pain, Jim isn't doing well emotionally. We're doing the best we can, and as I said, his sister is coming to visit this weekend which I believe will help. I hurt seeing him like this. One of the nurses from The Vince called me on Monday to talk about Jim's emotional state - they recognized right away that he's sort of sliding downhill emotionally. He must figure out how to get back to a positive mental state - he absolutely needs it to return to whole health. Perhaps the most frustrating thing is that nothing new has happened to send him in a mental nosedive - except the pain. Right now, pain and chemo are in charge of his body. It's not the most romantic notion. We've got to get him back to a place where his fighting spirit is what dominates his mind and his body.

Also frustrating: we can't see what's going on inside his body. The cancer could be shrinking, it could be stable...or maybe it's not. Why is it that we let negative thoughts completely consume our minds when we're nervous? Why can't we let positive thoughts dominate? Why is it that our positive mental images seem weaker than the negative ones? After all, we have the ability to control our thoughts. Or at least we believe that we should be able to control our thoughts. As much as we want that next scan so that we can receive some positive news, we also dread the scan - what if it's not what we want to hear? What if the doctors in Madison were wrong? What if...what if...we turn it over in our minds every 3 seconds.

Jim's just sick of it all. We need some good news. Dr. Haid ordered another CEA level, but the last results were so disappointing that we can barely bear the stress of hearing the results. Although every doctor has told us not to hang our hats on the CEA level because it's so unreliable, the fact of the matter is that it's hard not to do that because it's a chartable number that we can follow. A number seems a little more black and white in an extremely gray illness, but we know in our hearts that even the CEA is just gray.

Here's what it boils down to: if this is truly our emotional low, then I figure it's got to get better from here. True, it could get worse, but emotionally it would be tough to beat where Jim is now. I am doing better than Jim, but let's face it, I don't have cancer. I don't care how much I hurt for him, I'm not struggling like he is. If one more person gets those sad eyes and looks at Jim and says "How are you?" I'm betting he'll knock their block off. He might be low, but he's got pride. People who fake intimacy really piss me off.

I keep trying to remind myself, and Jim, that it's just for now...it's not forever. He won't be going through this forever. Good health and a good life are Jim's to enjoy. It's a matter of time. I pray he gets them back soon. I sincerely miss the mischevious twinkle in his eye when he knows he's being funny.

Too much information

If you embarrass easily, don't read this post. If you have a weak stomach, don't read this post. If you prefer to keep Jim in a glossy, ideal picture in your mind, don't read this post. If you work with Jim and choose to continue reading, please be aware that this is not a Professional Post. You'll be seeing Jim in a new light.

For the three of you left reading, here we go. One of the things that no one tells you about chemo: it messes with your colon. I mean, hasn't poor Jim already had enough messing with his colon? His colon is now 18 inches shorter. He's now missing his cecum and his appendix. But chemo messes with...what comes out of your colon. Your poop. Not a good thing.

Some of you may know that Jim is a legendary pooper. What man isn't? But Jim's is almost a talent. He's got a flair for...poop. Back when we lived in Charlotte, I once complained to Jim that I hated it that I would have to poop around 10:00 am after I got to the office. An annoyance for a germaphobe, to say the least. Without hesitation, Jim explained to me that if I really didn't want to have to go to the bathroom at the office, I would need to adhere to a schedule whereby I moved my...appointment...by 15 minutes every day, until finally, I would be sitting in the privacy of my own home to poop. He made it expressly clear that this was a commitment - no going off the schedule, no tinkering with the times involved. I realized then that I was dealing with someone way out of my league.

I've never understood the whole bathroom thing. I think women, in general, feel very different about the bathroom than men. I don't get just sitting there. Waiting for something to happen. Um, wait outside the bathroom, getting stuff done, and right at the moment you need to go, sit down and go. None of this loitering around.

I've suspected for years that Jim's polite method of getting away from me, and later, from the kids, was going to the bathroom. I mean, come on. No one can sit there for that long without a purpose. Jim and I are on our fifth house. In each house, we've strived for two things: 1. Location, location, location. And 2. Two bathrooms. This is simply so that Jim can have his own place in which to set up shop. Our first house in Atlanta only had one bathroom. What a disaster. Moreover, the bathroom was adorned with two tiny folding doors. Jim replaced the doors within the first week of living there. He couldn't handle the dogs snuffing around the crack between the doors.

Our second house in Atlanta, though, became home to The Magazine Graveyard. The house had two blessed bathrooms - and the one upstairs was Jim's territory. I rarely went up there save for a cleaning every few months. That's when The Magazine Graveyard started. Jim would start looking around downstairs, and I would slowly realize that he was looking for something to read. So he'd finally end up with some sort of reading material, typically a Family Handyman or some such magazine. Jim had a massive drawer full of magazines that I called The Magazine Graveyard because once magazines worked their way upstairs, they were never welcome into mainstream circulation again.

For someone so smitten with ritual and "alone-time", you can imagine how hard it is to be pumped full of drugs that make him go either extra-fast (the most delicate way I can think of to say that), or not go at all. It's the Not Going At All that's the worst. It's painful. And the pain makes everything worse - other pains in the body, mentally he starts to wonder whether it's the cancer that's preventing him from going, and he's even more scrunched over because of the pain. He's on a new anti-pain medication that, lo and behold, makes things worse. One of his chemo drugs, the irinitocan, is notorious for giving people diarrhea, so they give atropine to combat it. So far it doesn't seem that Jim needs the atropine, especially since his anti-pain med seems to be doing the trick.

This whole commentary can be categorized under "Things no one tells you about cancer". Apparently it's not a subject many people are interested in addressing. Who can blame them? But this blog is a commentary on what's going on in our house. Plumbing is important in our house. Keeping things moving is essential to happiness and mental well being. Isn't it that way for everyone? I think it is, it's just hard to talk about.

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.

How can you tell when you're over thinking it?

When I was pregnant with Rachel, I got so sick of talking about babies and pregnancy. It was an emotional pregnancy for me - we found out I'm a cystic fibrosis carrier and I ended up with gestational diabetes. After awhile it seemed as though I'd read every single possible book related to pregnancy, birth, nursing, getting a kid on a schedule, what to do the first year, etc.

When I was pregnant with Jake, I brushed up on baby feeding and a couple of chapters in our sleep book. That was about it.

Best to keep it simple, right?

A few months after Jim was diagnosed, he said "I'm just so sick of talking about it." Yeah, I knew that feeling. Since then, I've read every book, scanned a ridiculous number of websites, signed us up for an organic farm share, etc. etc. - I know some of what spurs me on is the need to feel active and busy. After all, it's important to me to feel as though I'm contributing to his recovery, even if I'm not getting the treatments, too.
We are truly sick of talking about it. Not that we mind answering questions. We certainly don't. And we know that people are truly asking because they care. We are glad to talk about it with other people. Friday night I went to a scrapbooking night with my friend Kim. I had a ball and I was delighted to be invited. But eventually the group started talking about someone else with cancer, and I started asking questions. What kind of surgery is she having? Who is her surgeon? Where is she being treated? As if I know every person in the Sheboygan area that has cancer. Why couldn't I just keep my mouth shut? Finally it came out that Jim has cancer. Then they started asking me questions. I could actually hear myself talking and I was thinking "KATE, SHUT UP. You're such a downer! This is supposed to be a FUN night."

When is it too much? When are we over talking, over doing, over thinking? When have we read too many books? Will I know when people just don't want to hear about it? Will I know when to stop talking? I don't want people to pity us, but I still talk about it. Not because I'm looking for pity, but because sometimes I feel that if I don't say something, it's just an enormous pink elephant in the room.

I am not known for being graceful under pressure. Today was a tough day - I'm feeling a lot of self pity and I decided tonight that I would actually rather take the SATs again than pick up any more dog poop. I freaked out on Rachel today. I freaked out on a 3 year old. It was not a good start to the day. I had such a meltdown that she actually ended up comforting me after a while.

I think we're over thinking this. I know I'm over thinking it. It seems like all we ever talk about anymore is pain, pills, chemo, pep talks, nurses, doctors, research, what book I've read, organic food, and what hospital to go to next. I really, really hate that this is our reality. I really hate that I am only able to read books on a subject that I really don't want to have to read about. I resent picking up dog poop. Our reality is so altered at this point that I'm starting to feel angry. And whiny. And like I don't want to pick up any more dog poop.

At some point I'd like to talk to Jim about...the price of tea in China. And not about green tea and its healing properties for cancer. I'd like to talk about how tough his day was at work...not about how it was tough because he was scrunched over because of stomach pain. I'd like to talk about what's going on in the neighborhood...just to fill him in, not because he's missing things because he can't leave the house. I'd like to talk to him about yard work as he's doing it, not because I have questions about tools that I don't know how to operate. (My new electric string trimmer is awesome, by the way!) I'd like to read a book for the sheer joy of reading - not to learn more about healing, not to cover my racing thoughts, not to try and figure out the cure that I somehow seem to be missing throughout all my reading. And I'd like to feel sorry for myself for dumb things like the fact that I stepped in gum at Wal-Mart. Not because our lives have taken an unbelievable turn out of the normal range.

Am I over thinking it? You bet. I'm not sure how we'll stop. Maybe we won't be able to stop until he's NED. Maybe we'll never be able to stop because we'll always worry, even when he's NED. Maybe we'll just get so sick and tired of it all that we'll be forced to talk about something else without the conversation turning to cancer. I can't wait until we get to talk about something perfectly boring and with absolutely no meaning. Like the weather.

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.

Change of chemo, so he's not in the trial

Something I believe I forgot to mention in my previous posts is that now that we've opted to go with a new chemo regimen, Jim isn't in the clinical trial any longer. Truthfully, it was a little hard to leave the trial. While in the trial, it sort of felt like he was helping. With what I'm not sure. But it definitely felt like Jim was contributing to the greater good.

By far, the toughest part about being out of the trial is the fact that we don't get our weekly dose of Deb Grey like we used to. Deb is one of the clinical trial coordinators, and she's the BEST. Every time Jim had chemo, she'd take a chunk of time and talk to us - in part because she had to ask Jim health-related questions for the trial, but also because she's just an all-around caring person. Sometimes I hugged her so hard that she might have felt that I was closer to a static-cling pantleg.

Getting to know Deb was most definitely one of the best benefits of participating in the trial. She's shared our joys, and our pain over scans that weren't as great as we'd hoped. She's called us at home and checked in on Jim, and me, too. She gave us the motivation to keep going through times when we questioned whether or not it was worth it.


Now that Jim is out of the trial, we're still getting calls and caring from Deb. I don't know how some of these people do it - she's held Jake for me during tearful doctor visits, she's played with Rachel and set up coloring trays for her, she's shared stories of vacations and stories of her kids with us. The people at the Vince get so personally vested in some of their relationships. It must be hard. It's got to be frustrating to see the emotional and physical rollercoaster of cancer. But at the same time, I imagine it's going to be a thrill for her, and for some of the others, when they get to hear the savory words "No Evidence of Disease". I'm not sure how we'll ever thank these people that give us light, encouragement, motivation, and comfort. Deb Grey is someone we'll cherish in our hearts forever.

Go ahead, make my day

Well you might think this post is related to "I hate it when people are nice to me", but actually, this one is about the battle with the organic diet.

Let me start by saying that we're still on the organic path; however, we eat a lot of non-organic foods because sometimes I just can't find the things I need in organic. And I've completely broken down on the whole organic milk thing. Paying $6.25 for a gallon of milk is just outrageous. We're drinking Dean's Milk (which claims not to use artificial growth hormones and they supposedly milk their cows until they're antibiotic-free until they put them on the production line). I had to supplement the organic produce with regular because I found myself leaving the grocery store with...nothing much. I finally decided that it's better to eat more fruits and veggies and get organic when I can.

Every once in a while, Jim will go completely renegade and demand bratwurst on white hotdog buns, yellow mustard, pork&beans, root beer, and yellow corn chips with cheese sauce from a jar. When he starts making demands like that I let him go - he's got a look in his eye that says "Don't mess with me on this one".

As you know, food has become something of an issue because Jim's tastes have changed as he goes through chemo. I'll bring something home that he's liked before (brussel sprouts, beans, soups) and he'll turn up his nose. I've been pretty accommodating in the past because, well, he has cancer. But that all took a turn while Jim's Mom and Sister were here.

One of the many luxuries of having Janet and Judi visit is that they cooked dinner for us every night. A whole week where someone else bought the groceries and cooked - what a delight. And the food was GREAT! Not only that, but I got to combine two of my favorite activities - watching Oprah and drinking wine - as Janet took care of the kids and Judi did the cooking. That's enough to write a song over.

So where am I going with this blog?

Jim ate everything. Everything. Everything. Without complaint. Not even so much as a scrunched up nose. WHAT the...? I should be glad that he ate like that, right? He's been refusing to eat beans for quite a while now. One night Judi even made beans and he ate them!!!!! You could practically see the steam coming out of my ears over that one.

Now, neurotic as I am, my first inclination was to question my cooking abilities. I mean, isn't that the first thing you thought while reading this? I'm no Martha Stewart, for sure, but I can most certainly make an edible dinner. And I'm only steaming my beans, so messing them up would be pretty tough. When I confronted him later on the bean issue, he said "but I ate them for you" - ah, you ate them for me? He said that he wanted to make me happy by eating his veggies. And that probably would have been fine provided I hadn't written to the world that he's got eating issues with my food. But to not turn anything away? Even the beans? He won't even let me bring beans home!

So, things came to a head (long after poor Judi and Janet left, who are most likely reading this with a look of dismay because they were just happy that Jim was eating) this week. My new Cooking Light came and there are some really good looking recipes in it.

I found myself challenging my chemo-challenged husband by saying things like "Hm...Chipolte Pork Tenderloin with Strawberry and Avocado Salsa?" and then quickly looking at him to make sure there wasn't any hesitation. I then gave him the wicked eyeball while I read off the next title "Teriyaki Shrimp and Pineapple Kabobs?" (pineapple is newly on the no-no list), and he still agreed to that, although with a bit of hesitation. Hm. More challenge: "What about Snapper with Spinach and Tomatoes?" Now I can hear him swallow a giant "gulp" - {crickets chirping outside} - "that sounds good," he managed to squeak.

Food shouldn't be a show-down, but hey, if he's willing to make exceptions for his Mom and Sister, then by-golly he can bend for me, too. He can at least try some of it. Lately it seems that my restrictions list is longer than what I am allowed to buy. And Rice Krispies don't count.

So far he's eaten the snapper and the pork tenderloin without complaint. Tomorrow night are the shrimp and pineapple kabobs. We'll see how he does with them. I'm thinking he'll manage to choke some of it back while I stare at him intently with my "Go ahead, make my day" look. And like our three-year old daughter, he has to try some of everything.

Oh, don't look at me like that. At least I haven't cooked up a brussel sprout-bean-pineapple-soup medley. Yet.

Tough Day - Emotionally and Physically

Jim had a tough day today. Our church is starting a series on Parenthood, which sounds positive and exciting (and it is), but when you have cancer, it brings up questions like "will I even be here to parent my kids?". Today was the first time I've seen Jim so upset since his diagnosis. It must be hard for him to look at our kids and wonder whether he's going to be able to watch Rachel learn to swim, or whether he's going to get to see Jake play t-ball. Or anything beyond that.

Logically, we know that Jim is way outside the statistics. They really don't even apply to him. After all, the average age for colon cancer diagnosis is 72. Other people whose prognosis were worse than Jim's have bounced back from Stage 4 cancer.

In every day life, we get so caught up in making plans, making treatment choices, going to chemo, going through surgery, getting blood tests, taking medications, visiting the pharmacy, making organic meals, going to tai chi, updating the blog - these are all really just activities that keep us busy and make us feel like we have a sense of control. We tend to get so busy in the process of things that we forget that what we're going through is a ridiculously stressful situation.

Sure, getting chemo is a step in the right direction. It's the right thing to do. But mentally, it's tough to go and receive chemo when he didn't ask for cancer in the first place. I can see where people would get really bitter in a scenario like this. We didn't ask for this. We were just going through life, minding our own business, when the cancer reared it's ugly head. Now we're left with a "challenge" that we basically have to win. The stakes are just so high that I imagine the pressure could really blow some people out of the water.

I guess our flurry of activity is a coping method. After all, if we just sat around every day to dwell on how high the stakes are, we'd both get depressed and have a hard time putting up a fight. At least this way, we feel like we're doing something. We're contributing to his eventual victory.

Jim had a tough day physically, although early in the morning he mentioned to me that he felt it was the first time he was able to get a full breath of air. His core temperature is fluctuating all over the place. He's freezing cold or sweating profusely. It's almost like he's in detox. This is all normal, according to the doctors. And he's stopped taking the vicodin they gave him for pain relief. He's still got a lot of pain in his back, but he's not really crazy about the vicodin. I think part of the issue physically is that he's dealing with so much emotionally. At least I think that's what's going on today.

Did you know that almost 1/4 of cancer patients start getting sick before they get their chemotherapy? The anticipation of what's coming makes them sick. Although I think he's been improving physically, he knows what's coming tomorrow. Tomorrow. The darn chemo again. Sometimes I feel like begging for a break for him, but at the same time...if he takes a break it could set him back, and that's the last thing we want.

When I'm calm and I can maintain my sense of perspective on the situation, I try and tell him that even though this is horrid, when he's done he can go back to being himself. That's something that is really eating at him today. He hasn't been "normal" Jim since September 13, 2006. 7 months of not being yourself. 7 months where your thoughts alternate between "I have cancer" and "Am I going to beat it?". 7 months of "treatments". In the overall scheme of things, this may be a bump in Jim's road of life. Granted, mentally it will always be a pretty BIG bump, but if he beats the cancer, he can go back to being Normal Jim.

Thus far meditation and prayer have helped me remain calm and maintain my sense of perspective on the situation 99% of the time. The 1% typically happens when I'm not at home - when I'm alone, driving somewhere in my car. I know in my heart that Jim can beat it. I know that Jim knows he can beat it. Heaven knows that I've offered him lots of superficial incentives to beat it, including a trip to Hawaii, a pot rack (future blog entry), a lifetime of foot massages (another future blog entry), and a new planer (woodworking tool). All that on top of the obvious incentive for beating the cancer - life.

I guess even the most collected people are entitled to a moment of panic and doubt when the "C" word comes into their lives. I hate cancer. I hate it. I hate it that my Jim isn't Normal Jim. I hate it that he has to deal with stress like this at such a young age. I hate it that he has to worry about things that he shouldn't have to worry about. Blissful ignorance and a sense of immortality should be something he can have, just like the rest of us.

I'm giving him some time. I know he can beat it. When he does, I'm planning to shake my fist at the cancer and scream "GET AWAY FROM US! YOU ARE NOT WELCOME HERE!" I then plan to do a happy dance in Dr. Haid's office when we hear the words we long to hear most in life: "No evidence of disease."

It's sad how cancer changes your perspective - shouldn't the words we long to hear most in life be "I love you"?