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.

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.

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?

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.

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.

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.

I hate it when people are nice to me

We had a good cryoablation follow-up visit with Dr. Siddique today. He checked out Jim's side (the insertion points for the needles), went over the scan with us, and told us that he'd like Jim to come back in for more ablation in a month or so.

Dr. Siddique was a little concerned with Jim's night sweats. Things haven't gotten better with Jim's core temperature. He's not running fevers, which is good, but at the same time, you can imagine how frustrating it must be for him when he has to get up four times a night and change his clothes because he's drenched in sweat. It's hard for him in two ways - it's annoying to wake up like that, he's resorted to sleeping on towels so that he can change them when he wakes up; and it's frustrating because he's not getting a full night's sleep. So he's exhausted on top of chemo nausea. Any way, Dr. Siddique had them schedule a CT scan for Jim next week so that they can make sure there's "nothing exciting going on in there", as Dr. Siddique put it. Of course once he said that, Jim was immediately convinced that there's a massive infection festering away on his liver. Great.

Jim's doing okay, but he's pretty sick. He had to ride to the hospital with a bucket today, just in case. That made him crabby. Then the visit with Dr. Siddique, while successful, put Jim into a bit of a panic with the whole infection thing. (By the way, Dr. Haid's theory is that since there's so much dead tissue in there, his body is treating the tumor as a foreign object *but it's not infected*, so he's basically sweating it out. Dr. Haid hasn't missed the mark once in the last seven months, so I don't think he's wrong now.)

After the visit with Dr. Siddique, we went to the Vince so that Jim could have the pump taken off. He was even crabby with Brenda and Joan, who are basically the people that keep Jim going to the Vince. Pump out: done. Then, we had an exciting development - we've been asked to be on the Patient Advisory Committee. Yippee! We are really excited about that. This is a great opportunity for us to help other newly diagnosed people and their families. So today we met with the coordinators of the committee.

Here's where we get into the title of my post - "I hate it when people are nice to me". While we were sitting with Ken and Darlene (the coordinators), she looked at me and said "So how are you doing?" I said "Oh, we're doing okay, Jim's not feeling so well today." Then she said, "No, I mean, how are you doing?" Oh, she means me...Kate. Not Jim, me, the kids and the ball and chain we call cancer. Usually when people ask how we're doing, they mean Jim specifically, or all of us. I typically gloss it over by saying something like "We're managing" or "We're doing okay" or "Jim's going through {fill in the blank} but he's handling it well and recovering nicely". It's not that I don't appreciate people asking after us, but typically people aren't looking for me to launch into some diatribe about Jim's health. So my standard answers usually work pretty well.

But not for people that know what it's all about. When someone asks about me, and they really want to know, I find that I wrinkle my nose to keep from crying, and I say "I'm okay". Why do they have to be so nice? It's so much easier to keep up my I'm-in-control-and-I can-handle-it-all facade. Keeping rigid is what keeps me going some days. Sometimes I fear that I'll become a gelatinous, crying blob and I won't be able to recover enough to support Jim. And then who would make him meals that he won't eat?

I also got the happiest flowers from our friend Stephanie. Sometimes it's little things that make or break a day. (That's not a request for flowers, by the way, this is just running commentary.) But the flowers were addressed to me. Not to Jim, me, and the kids. Sometimes getting something of my own relieves a lot of burnout. I'm aware that the cancer journey is about Jim, but it doesn't mean that I don't hurt for him. While he goes through the pain and sickness of surgeries and chemo, I go through the pain and sickness of watching the person I love go through surgeries and chemo. I know that this recovery and return to whole health is all about Jim. And that's why it's so easy to lump how I feel into how we feel. I feel guilt that I am struggling with this, too. After all, it is Jim that goes through the surgeries and the chemo - not me. And I feel terrible that he's going through it.


So my aforementioned 1% of my time where I'm not completely cool and collected and rational is often spent opening my mouth and inserting my foot. How can my verbal words be so graceless when my written words seem to convey how I really feel? Why is it so hard for us to admit to, or express vulnerability to the people we care about, or the people that care about us? No one wants to look foolish, but when I'm blogging about the fact that my husband has the least designer kind of cancer, aren't we past that?

Maybe it's that when I cry, I'm not a pretty crier. Mascara runs all over my face and I end up looking like a wreckage zone, and I can only allow that to happen near the comfort of my own home. Maybe it's that I don't want Jim to know I'm weak. I don't want him to think I'm not going to be able to recover and own up to the marriage vows I made him - in sickness and in health. Maybe it's that I don't want my kids to see me cry. Or the other people in Kohler. Whatever my reasons, I sometimes wish that people weren't so nice to me. It's much easier to attend to the business portion of the cancer ordeal rather than the emotional portion.

Fair warning: if you see me and say something nice, and I respond in the idiotic, it's not that I don't appreciate what you said. I most certainly do. It's that my words don't work as fast as my foot, and I oftentimes find that my foot makes it into my mouth faster than the appreciative words can make their way out.

Launching My Medical Career

Since Jim's diagnosis, I've been considering changing my career path to something in the medical field. I'm not sure what I want to do. Originally I thought I'd go into massage therapy, and offer free massages to the patients at The Vince. But when I mention massage therapy to my friends and loved ones, I always receive a haughty laugh and the "um, no." When I question it, their response is "Kate, you don't like people. And you certainly wouldn't want to touch strangers." Oh. They got me on that one.

I've also considered medical transcription, which isn't exactly helping anyone, per se, except the doctors. But at least I'd be doing something. The only thing is that I'm a hunt-and-peck typer. I'm a fairly fast hunt-and-peck typer, but I still don't have the proper form nonetheless.

Nursing: I thought I could do it right up through Wednesday, April 4th at 12:03 pm, when one of the new nursing assistants came in to give Jim a Foley Catheter. Watching that being inserted was enough to scare me out of nursing. The poor guy was so nervous - it was his first time doing a catheter. Poor Jim was nervous because it was the guy's first time doing the catheter. There's not a ton of dignity as a patient, I've got to say. I don't think I can inflict pain on people like that. Obviously nursing is a very compassionate field - it takes a special kind of person. Maybe that person isn't me. Plus I despise needles. I gave birth to two kids with no drugs in order to avoid the whole needle thing (and, by the way, I'd do it again without drugs if given the choice). Why would I want to step into a career where I have to stick people with needles?

Physical therapy? No, too much touching.

Nutrition? Hm. Maybe, but it's not something I'm passionate about even though I'm more educated.

Research? Too much math.

Nursing assistant? Nah. I might as well be a nurse.

My last resort is training to be a medical writer, wherein I would translate medical information into brochures, marketing materials, and educational materials that people outside the medical field can understand. It's a possibility, but I question the job prospects. Especially in SHEBOYGAN. As great as the medical care is, I'm not convinced they're going to need scores of medical writers.

So far the two careers I keep revisiting are nursing and massage therapy. I guess I'll start my research. I guess the real point is that I want to help people, and after seeing what cancer patients have to go through, they could really use people who care about them and their plight. The nurses that have helped us - at the hospital and at the Vince - these are the kind of people I want to be when I grow up. Caring, compassionate, good people. People who are so awesome that I swear the healing begins when they come into the room. People that make our day. People that make Jim's surgery pain subside the minute we see them. Those are true heroes. They are helping Jim kick the cancer every day. The very sight of them is calming and positive.

Jim's recovering - slowly. He has pain in his chest and back when he inhales. So, every time he breathes in, it hurts. He's short of breath, so physical exertion - even walking the stairs, is hard for him. He's taking some pain medication and that seems to help a little bit. Dr. Haid said that all these things are normal. We just have to wait them out. All of his blood levels are fine, which is exciting. And so far he's not shown any risk of infection, which is thrilling.

Jim starts chemo again on Monday. His new chemo combination causes a rash that makes him look like a teenager on a double-dose of hormones. He's covered in pimples. His hair was hurting last week, and we thought it might fall out. The real reason that his hair was hurting is because his scalp basically blistered as a result of the chemo. It's clearing up now. And Dr. Haid gave Jim some gel that he can put on his skin to help control the rash. We can't let the rash get out of control because I've read there's a possibility it can do some longer-lasting damage to his skin. The good news: the nurses got all excited when they saw the rash. They said that's typically a sign that the chemo is working. Hooray!

One step at a time. We will move the cancer out one step at a time. Cancer is not welcome in our lives. After Jim is completely healed, I hope that we can use our knowledge to help other people win their fights. I hope we can provide a tenth of the inspiration, commitment, and caring that people are currently giving us.

The cards make me laugh, You make me smile!

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

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

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

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

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

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