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.

Procedure Went Well

Hello friends and family-

Jim's procedure went well on Thursday. The doctors were very happy, as things went off without a hitch. They also took another 2 liters of ascites out of his abdomen. We won't know the results for around 60 days. Jim is scheduled to have a scan at the beginning of September, but they aren't expecting remarkable results on the first scan.

Unfortunately Jim did not do well with the conscious sedation, and he was quite sick after the procedure. His parents are with him and they still haven't left Chicago. They were planning to leave today.

Jim has an appointment with Dr. Haid on Monday morning to discuss TPN and methods for removing the ascites buildup as it happens.

I'll report more later but I wanted to let everyone know that he's doing well, the procedure went well, and we are praying that those little microspheres are working like crazy to kill off the tumors.

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!

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.

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.

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.

Updates

Things going on at the Marventano household:

1. Rachel had her first dance recital last weekend. I took her to a salon to get her hair curled. She got to sit in a fire engine while having her hair done. Then onto the recital...she was fabulous. Not scared at all, and in front of quite a large audience - at least around 200-300 people. She actually came out onto the stage waving. The girls did a teddy bear dance. At the end they got to throw their bears up into the air. Apparently that was Rachel's favorite part because she took the liberty of tossing her bear. Twice. Rachel is in the middle in this picture.

2. Jim's leg is getting better. He still has to keep it elevated 95% of the time, but he's not longer using the wheelchair, which is nice. I'm not such a hot wheelchair driver. Strollers turn on a dime. Wheelchairs hosting a 200 pound man don't. He's even managed to get off the crutches, although he can only walk for a few minutes before the pain becomes so intense he has to sit. I asked the nurses at the Vince if it was normal for a clot recovery to take this long, and they confirmed it. Darn. I secretly suspected that he's been okay since Saturday, but he was just having fun bossing me around from the couch.

3. Jake is a drooling, biting, screeching cutie. Good thing he's so cute. He's in desperate need of a haircut, but I refuse to have it cut until he's a year old. The poor kid looks like one of the Ramones.

4. I spoke with the Mayo Clinic today. We've set up a tentative appointment for the 3rd week in July. The reason for the time gap is that they agreed with Dr. Holen's assessment in Madison - stay the course and reevaluate in two months. Even if we drove over to Mayo today, they still wouldn't take him off the regimen he's on. They were also highly complimentary of Madison, which gave me some mental relief. They also commended Dr. Haid for urging us to seek out other opinions.

5. I learned the hard way about letting the lawn go a little too long without cutting it. Now, bear in mind that I've mowed the lawn twice before today. It was sort of fun. Before today. But I've been putting off mowing the backyard because I hate to pick up the dog poop. My neighbor, Kate, graciously mowed our front yard (not because it was unbearably long, but because she's cool like that), but was wise to leave the backyard to me. I hate the dog poop. So the lawn was so long tonight that the blade got stuck in the mulching and basically shut the mower down. I'd just filled it with gas (a first for me), so I couldn't figure it out. Annoyed, I had to come in and ask Jim. I'd be one of those people that pulls mulch out from the blade and gets her hand cut off. What a way to make the 5 o'clock news. The blade got stuck more than three times before I started leaning on the handle to lift the front of the mower up. By then the yard was pretty much done. I'm learning all sorts of new things. I've always considered myself a little prissy when it comes to manual labor. Why do the work I can pay someone else to do? But I'm finding there's almost a meditation to it. I can sort of zone out and not have to think about...anything.

6. Rachel's last day of preschool is tomorrow. My heart aches. I frosted 50 cupcakes tonight for her class. 20 kids, plus a parent - plus a couple who'll want more than one. I'm really getting into the Stepford thing...frosting 50 cupcakes? I would have turned my nose up in a minute before Rachel was born. But now...Her last day of preschool. Sigh.

7. We went over to the Vince today to return the wheelchair that we hijacked for the weekend, and for Jim to have his blood tests. We ended up staying and talking to the nurses for quite a while. They are just so soothing. I imagine they really want us to go home so they can, you know, help other patients. But they are so awesome.

8. I put Jake to bed at 5:30 tonight. Rachel had swimming lessons at 6:00, and I couldn't handle schlepping them both around the pool. Good thing because Rachel had a hissy fit at the end of her swim lesson (in front of everyone in Kohler, whose kids are perfect - strike one for the crazy family). She was in bed at 6:50.

9. My horse won on The Bachelor. No making fun of me. Jim was rooting for her too. But...in his defense, he can't get off the couch. I watch it voluntarily.

10. Tomorrow Jim has an appointment with the therapist. I think it's good to have someone to talk to about this emotional rollercoaster.

Things are good, then sometimes they're not. Sometimes we forget about what we're dealing with, especially when we see the kids so happy. After all, not every moment has to be double-dose of reality. Watching Rachel frolic around in a huge tutu is good for the soul.

Every Little Bit Helps

I'm going to report on the positives in our scenario today.

1. Jim got the OK to stop his daily shots yesterday, since his blood level is back to what Dr. Haid refers to as "theraputic". Jim will continue on with his coumadin (blood thinner), as usual. He goes back in on Friday for another checkup. His leg is still in pain but he's taking painkillers to help control it.

2. Rachel is going out with a little friend after school today, which will give my Mom a break. When I called my girlfriend to set up the playdate, I basically had a mini-meltdown on her answering machine. Um, hello? What happened there? I'm still not sure, but she was totally cool about it. If there's one thing I can say for the people of Kohler, it's that they know how to take things in stride.

3. We've had several visitors over the past couple of days - a friend from our church who beat advanced prostate cancer, a girlfriend from church who gave us inspirational CDs for the drive, and one of the 2K nurses gave us a fun bag FILLED with stuff for the drive - a Van Morrison CD, Diet Coke for me, water for Jim, muffins, sunflower seeds, nuts, cookies...you name it! We were delighted we got a chance to visit with her.

4. Guess what I got?! Six bottles of wine delivered to my door last night, courtesy of Janet's family (Aunt Cheryl, Uncle Bob, Ted and Tonia - thank you!). I thought of cracking into one last night, but thought better of it in light of today's drive. Friday night, here I come!

5. Please keep us in your prayers. We are off to Madison today. I believe that they will have something for us. A study or some suggestions, at the very least. We have heard great things about this doctor and we are hopeful that he's got some good clinical trials for us.

6. We got a call back from Sloan Kettering, although I missed it, so I'll call them today and hopefully they can squeeze us in for an appointment.

It's easy to complain about what's going wrong. Sometimes it's hard to be thankful for the things we do have in the face of troubled times. But we have to remind ourselves (or, more specifically, I have to remind myself) that we have two beautiful, healthy children. We live and attend church in a fabulous community, where people are truly banding together and lifting us up. And we have family that supports us through thick and thin. The one statement we can't add to this is "at least we have our health", BUT, perhaps with all our other blessings, we'll be able to overcome and prevail over a situation that will be a blip on the map of our life.

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.

There's No One Like Mom

Let me start by saying that we seem to have returned to whole health here in our household, albeit a bout of cancer. Thank heavens, because the whining was really starting to get to me. Including my own.

Yesterday was the day that the shot to boost Jim's white blood cell count was supposed to start hurting. So far, so good. Admittedly, Jim is exhausted. More tired than I've seen him in several months. BUT, his Mom arrived yesterday to help us take care of the kids while Jim has his surgery on Wednesday, and I think that's helping him.

Most of you probably know that Rachel is a complete Daddy's Girl. I've always joked that my kids have the worst case of the Oedipus complex. Toward the end of last week, that fact became painfully clear - as Rachel was using her energy to recover, it made her a tad crabby. And when she's crabby, it's my fault. All of it. No matter what it is. Even if I'm a mile away, it's my fault. So obviously the end of the week got a bit trying. But there's an interesting element to our relationship. During one of her worst fever episodes, Jim tried to help her get a drink of water, and she just wasn't doing well with him. I picked her up and she hugged me and clung on as I got her some water. And, no matter what, she loves to have me tuck her into bed at night.

Sometimes, especially when you're sick, there's nothing like Mom. I believe that Jim is in good spirits and feeling reasonably well because his Mom will be here for the week. Today Jim and his Mom watched the kids, and I had the good fortune of going to Chicago to see the BodyWorlds 2 exhibit. Alone. A blessed two hour drive. Alone. An afternoon of human bodies injected with plastic. Alone. Another blessed two hours in the car, alone. Can a day get much better than that? I think everyone wins! Jim and his Mom got to spend a little quality time together, the kids got to spend time with their Mimi, and I got a respite from life.

Moms just have that je ne c'est quoi that no one else has. And every mom has just the right measure for her kids. (Well, most moms, anyway.) Moms have cool hands when you have a fever. They listen when you're feeling afraid, down, or alone. And they know just how to make you feel better. Only a Mom tucks you in just right at night. Only a Mom knows how much Nestle Quik to put in your chocolate milk. Only a Mom knows just the right time to visit or call.

We have an exciting week coming up. I'm glad Jim's Mom will be here to help with the kids, make a few of Jim's favorite dinners, provide comfort and support, hope and encouragement. Those are the things a mom does best.

Letter to the Public, and other things

Dear Reading Audience:

Please help. I've been trapped by a sick, whiny 3 year old, a screeching 10 month old, and a husband who's going through chemo. I'm doing okay but we have barely any bread or milk left even though I went to the store yesterday. They are torturing me by making me watch "Go, Diego, Go!" and "Angelina Ballerina" in a continuous loop. The big hairy one decides he doesn't like what I'm cooking for dinner after I've finished cooking it. The little girl threw up. And the little one poops in his pants, and I swear it, he giggles afterward.

Please send wine. Preferably red. Not too light, though. Something heavy - like a cabernet sauvignon that's enough to make my cheeks pucker.

Yours in captivity,
Kate

Just kidding. Well, sort of.

Jim started his new chemo regimen yesterday. He got sick last night, but that seemed to push him past a milestone - he's better today and he said that he actually has more energy than normal. With this new chemo regimen he's going to have to go in for a shot of something that boosts his white blood cell count on the Thursday after chemo.

We are both confident that "this is the one" - this chemo regimen is going to help Jim kick out the cancer for good.

Jim receives Cryoablation on Wednesday, April 4.

Uh-oh. I think they've discovered that I'm communicating with the outside world. They just caught me with the computer open. I'm doing better than my posts actually suggest, but God help me, it's back to Angelina Ballerina.

Out of Commission

I haven't written over the last week because our family has been a bit out of commission.

Jake was struck with the norovirus the week before last. Norovirus is basically a stomach flu - highly contagious among kids. I blame the YMCA babysitting, but of course I have no proof. Well, once Jake was sick (and boy was he ever - 104.6 temp!) Jim was convinced that he was sick too. Of course. So over the last week I've taken care of two babies, plus Rachel. Jim miraculously recovered on Friday, although we still took it very easy over the weekend and we went up to my parents' cabin. [Help with the kids. Pure bliss.] Jake didn't fare as well as Jim, and he really just got over it yesterday. Norovirus starts with throwup and ends with diarrhea. Yuck. Probably my #1 least-favorite activity as a parent is cleaning up anything that came out of someone else.

Jim couldn't receive chemo last week because he wasn't feeling well. If he did have norovirus it could have been disastrous with a new chemo regimen. They aren't really jazzed about administering chemo to sick people.

Well, Rachel woke up whiny this morning. Lo and behold, she's at 103.9. Ack. And, as luck would have it, Jim is "sick", too. I told him he'd better buck up and go in to receive chemo tomorrow because I'm not taking care of three babies. This is where I put my foot down.


You know, as a girl, I imagined a vastly different life than I am actually now living. While other little girls dreamed of their wedding day, I dreamed of a sales career and owning my own loft in New York City. Much akin to Sex and the City, except that at the time I didn't know about sex, so my dream involved having my own cat and being able to do whatever I wanted to do, whenever I wanted to do it. And wearing really cool clothes all the while.

I doubt quite seriously that my green Lands' End down vest and Gap jeans would fall into the "really cool clothes" category. And Sheboygan, Wisconsin is hardly a synonym for New York City. And I don't even have a cat - I have two smelly, giant dogs. And I was never much good at sales.

Although I've largely failed at my childhood dreams, I realize that my current life blessings far outweigh the things I thought I wanted as a child. One never really envisions long, sleepless nights with inconsolable sick kids, getting thrown up on, and having so many poopy pants in the laundry chute that I finally run out and am forced to let my son sit in a diaper while I do an emergency load of laundry. Would I trade it for a day in the life of "Sex and the City"? Not on your life. I can't think of a better life than the one I'm living now.

Although I could use a new Marc Jacobs bag, some arch-killing Blahniks, and a crisp pair of Seven jeans.

Happy St. Patrick's Day!

Well, one day late. But for those of us that are truly Irish, it's St. Patrick's Day every day, and we're blessed all year long. After all, look at everything I have to be thankful for - a great husband, two beautiful healthy kids, two smelly yet lovable dogs, and a happy home that manages to house all of us without busting at the seams. And, of course, we live in Kohler - what could be better than that?

We went to dinner and then to a fun party last night. As I looked around the party, I realized how truly blessed we are to live in Kohler. Jim and I have been trying to make a move to Wisconsin for so long that it's crazy. We spent 8 years trying to get to where we wanted to be - right here. Even though we didn't know it was Kohler we wanted, this just seems to be our match. I was rooting for Chicago, Jim was rooting for anywhere in Wisconsin - and we got a great compromise. Two hours from Chicago but in a teensy town that holds more charm than some cities twice it's size.

When this opportunity came up, we were so delighted that it was offered to us. We were excited about the possibility of living closer to my parents, excited about moving out of Atlanta, excited about the potential for buying a great house...the list goes on and on. There are a lot of places to live in Sheboygan. We chose Kohler because Jim can walk to work, but also because when we drove by the school (the school, meaning a single school that houses kindergarten through senior high school!) the kids had their bikes in the bike racks with no locks. Leave a bike without a lock in Atlanta for 15 minutes and it's gone.

What sealed the deal on this house for us is our neighbors, David and Kate. The day we looked at the house, their two lovely girls were outside playing. There were very few kids in our Atlanta neighborhood. As it turns out, one of their girls is in Rachel's class. The other is a little older, and is the sweetest girl I've ever met. Both the girls treat her like a little sister, which is very endearing. That day, after we were done looking at the house, we stopped and spoke with Kate, and we just knew that this was it.

I consider our neighbors, and Kohler, the pot of gold at the end of our rainbow. A couple of days after Jim was diagnosed, I was crying to Kate and I said "we just got everything we ever wanted, and then this happened". And do you know know what Kate said? She said "Well, now you know what you're fighting for." And you know, she was right. I think about what she said all the time.

Going to parties and seeing friends, spending time with people we care about, enjoying our cute little village house, and living in a place where our kids can walk to school or ride their bikes (without locking them!) - those are our everyday reminders of the special things we have in our lives.

So even though our last name is Marventano, we've got the luck of the Irish every day.

400 Cancer-Free Minutes

Jim and Dad had a fabulous time in Mexico. They did 2 dives a day. After their dives they took naps and went to dinner. They did a little shopping, a little eating, a little socializing, but the bulk of their trip was spent in the water.

They both came back with beautiful tans - to a certain extent. Their faces, lower arms and lower legs were wonderfully tan. Anything that wasn't covered by a scuba suit is tan. Anything that WAS covered by a scuba suit is still ghost white. (Or, as ghost white as Jim's beautiful olive skin gets.)

They arrived home at around 1:30am on Monday evening. Immediately upon their arrival, Mom and I were subjected to their dive video, which I have to admit was pretty neat. The dive video was also what tipped me off that perhaps most of their time was spent diving because of Babette, the instructor - tan, and clad in a small, red string-bikini.

They saw some pretty neat stuff - 5' long morey eels, huge sea turtles, sting rays, schools of fish, brain coral, and even a shipwreck.

During Jim's average day, no matter what activity he's up to, he'll be busy and suddenly remember that he's got cancer. Washing the dishes - "oh, I have cancer!", Answering email - "oh, I have cancer!", giving the kids a bath - "oh, I have cancer!". You get the idea. In Mexico, they did 10 dives, around 40 minutes each. Jim said that the entire time he was underwater, he never once thought about the fact that he had cancer. Here's a positive mind - he said to me "That's 400 minutes when I didn't think about cancer!" It's amazing how cancer invades the brain. An idle mind is easily taken with thoughts of cancer. Jim said that scuba diving is almost like flying. I can't remember the last time I saw Jim so excited about something.

When Jim kicks the cancer we've got a plan: trip to Hawaii, scuba diving, and Jim's getting a tattoo. Wait till you see those pictures on the blog! ;)

As you might have guessed...

The test results are not exactly what we hoped for, which is why I haven't updated the blog until today. The scan results showed some growth on his existing tumors, about a 10% increase. In the grand scheme of things this wouldn't be characterised as significant growth, but at the same time, ANY growth is a setback when you're dealing with cancer.

We had a good meeting with Dr. Haid today, and after looking at the results, his suggestion is to stay the course, at least for a bit longer. He's seen some success in patients who have some minor growth at the outset because the tumors become inflamed, and then the tumors can shrink dramatically - anywhere between 25 - 50%. Needless to say we're hoping that Dr. Haid has this scenario pegged, but there are no guarantees with cancer, and even Dr. Haid cannot predict the outcome of how one chemo drug will perform on any given person. So, that being said, Dr. Haid is very heartened by the fact that Jim's CEA level is still on the decline - a sign that although the existing tumors haven't shrunk, something positive is going on in Jim's body.

One positive aspect of this last scan is that there is no NEW growth reported - meaning we're fighting the same tumors he was fighting before - not a host of new tumors in addition to the growth on the existing ones.

Right now, we are choosing to focus on the fact that Jim's CEA level is down by more than half, and the fact that there are no new tumors. Jim had a treatment today of his regular chemo combination. Next week we'll be in NYC at Sloan Kettering, meeting with Dr. Kemeny. Dr. Haid has prepared all of his notes and recommended courses of treatment so that we can have Dr. Kemeny review them. We seem to be at a bit of a crossroads with the course of action - we need a second opinion, and based on what Dr. Kemeny says, possibly a third. We believe that Dr. Haid is extremely competent, but we also want to make sure that we have all our bases covered, and that means conferring with Dr. Kemeny.

We are very disappointed. We honestly never imagined that we wouldn't get great news. Even though we were prepared to deal with some disappointment, I don't think (based on the CEA level) that we imagined that anything was growing. But now is the time to pick ourselves up, realize that we should not have any less hope today than we did yesterday, last week or last month, and keep going. My Uncle Mike pointed out that this is round one in a 15 round fight. A single CT scan does not account for the whole of Jim's treatment.

Dr. Haid also graciously offered to meet with Jim after work on Thursday night to work with him on some alternative healing. We're not sure what that entails, but based on Dr. Haid's experience, I imagine it'll be pretty neat. For those of you who haven't heard, in October Dr. Haid introduced Jim to the concept of "Chi" by giving us a demonstration of how his chi works.

Chi or Qi: the circulating life energy that in Chinese philosophy is thought to be inherent in all things; in traditional Chinese medicine the balance of negative and positive forms in the body is believed to be essential for good health

By giving us a demonstration of Jim's chi, Dr. Haid got Jim to sign up for tai chi and I think he seriously changed the way Jim's perceives Eastern medicine. (If you want to know more about the demonstration, you'll have to ask Jim. At the risk of being labeled flighty, I beg out of explaining the details - if you hear it from Jim, it's amazing - if you hear it from me, you'll think I'm a quack!)

We have faith that Jim will slay the beast. It's only a matter of time.

On a lighter note, I'll be posting pictures of Jim's trip to Mexico. He and my Dad managed to make 10 dives throughout the week, and they both got an Advanced Open Water Diver certification while they were there, which enables them to dive to 130'. Based on some of the pictures, it seems that I'd better get a certification fast - their dive instructor Babette was pretty hot. I'm not jealous, mind you...

In and Out

Jim's doing fairly well through this cycle. We've made a few changes, and I think they are helping.

• He started taking the Compazine (anti-nausea that makes his chest feel funny) again
• He's more active this time (although he did beg out of mall walking the other day...I wonder why?)
• He's drinking lots of Gatorade, which seems to be the only liquid he's capable of drinking right now. He's choking down water with lemon, but it's a difficult task
• He's looking forward to going to Mexico next week

I personally think the biggest healing factor in that list is the trip to Mexico. But, he's also doing his Tai Chi. His Aunt Cheryl gave him a Tai Chi DVD for Christmas, and he likes that. So he can karate chop in slow motion even when Dr. Haid isn't around.

He's still sick, but this isn't like the last two rounds. He's got waves of nausea this time, and nothing seems to taste good. He rated the waves of nausea at up to a level 4, but not all the time. And he hasn't gotten physically sick. I think that getting physically sick is the worst for Jim. In the past 11 years, I've seen him throw up ONCE. (And that was from yucky store-bought cookie dough that he ate raw.) Until cancer. Since the cancer he's thrown up more times than we both care to count.

His description of the nausea was interesting: "You know how it feels when you burn your tongue? Well, imagine that the entire surface area of your tongue is burned, and then try eating. It doesn't taste right." It's not the same kind of nausea that we're used to when we have a stomach virus - it's different.

Oops. Jake is crying. He's up from his minuscule nap. Sometimes I think "nap time" is a cruel joke that Jake likes to play. He makes me think he's going to sleep like a normal baby, but he fools me every time. Fool me once, shame on you. Fool me every day, shame on me. Is it foolishness, or blind hope that he'll sleep more than 35 minutes? A girl can dream.

Update on The Gambler

Lest I get too sentimental, Rachel asked me for "The Monkey Song" today.

I went through almost every song on the CD before getting to The Gambler. I finally figured out what she meant:

"You never count your MONKEY, while you're sittin' at the table

There'll be time enough for countin' when the dealin's done."

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