It's not genetic!

Finally - a spot of good news. Jim met with the Genetic Counselor a couple of months ago. We decided to have a couple of tests done to determine whether or not his cancer is genetic. Turns out, it's not! Hooray!

Obviously, this is great news for our kids. The first test came back with 90% certainty that it's not genetic. We are now sending Jim's biopsy samples to Mayo for the second test. That second test will fill in the other 10%. I know 90% is awfully good, but I thought it would be better to be safe than sorry. We are also planning to sign Jim up for a program where they store his DNA so that in the future, if they have more advanced genetic testing, or the kids need a frame of reference, or...whatever. Sort of like storing a baby's cord blood. Speaking of babies, Jake got his first haircut this weekend. It did not go well. But, he looks adorable!

This is also good news for Jim. Although it doesn't provide us with any answers, it does give us a little peace of mind in that once Jim beats this cancer...that's it. There's no guarantee that he'll never get cancer again, but if the cancer was genetic, then there's a 50% likelihood that he'd get cancer again in his lifetime. So that's one less thing we have to worry about! Let's get through this cancer and then we can worry about anything else that springs up later.

The stinky thing is that Jim just got stuck with the short straw on this one. It would have been nice to know he had the short straw before it got to be so advanced. But, if this is our straw, then we'll see it through and play.

My friend Amy and I talked about this the other night. This is not the natural course of things. I have to believe that things went seriously out of whack, but that they can be realigned. It just doesn't seem like we're destined to do anything but win. Anything else is unthinkable. And truthfully, when we do think about not winning, we get terrified and give ourselves a mental slap on the wrist. It's totally natural to have fears and wonder what will happen, but I believe that spending more time focused on meditation, prayer, and healing and less time focused on worrying is the thing for us to do.

We have faith. We're praying for divine intervention here, and I believe that he will get it. It just doesn't seem like anything else would happen for Jim, does it? I don't know why some people are healed and others aren't, but I do know that Jim has to be one of the healed. When I get nervous I try to visualize God laying a big, glowing, light blanket of healing over Jim. It sort of shines white light. I like to believe that as we learn to accept his healing, we'll start getting more and more positive news. I'll hear Lola. And Jim will get his pot rack.

Happy Birthday Jim!

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

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

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

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

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

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

Memorial Day

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

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

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

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

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

It's always the quiet ones

I'll begin by saying that it's a chemo week. Jim started his chemo late in the week - yesterday. He'll get his pump out on Friday. You can always tell how the chemo is going to go when Jim gets home by the pallor of his skin. If his skin looks normal, it's going to be a good week. Relatively speaking. If his skin looks pallid, it's going to be tough. He got him yesterday looking pretty bad. He seemed to feel okay...but just okay. As the night progressed he got worse. He's pretty sick. I can only hope that it's the chemo blasting the heck out of the cancer cells. I hope that he's not sick for nothing.

I absolutely hate it when he's sick. It discourages me. I'm sure it discourages him, too. On a night like last night, sometimes I feel so sad that it's hard to keep going. To keep living our normal lives on top of our cancer lives.
You know what keeps me going on nights like last night? The quiet ones. The friends and supporters that do some truly awesome things for us, big and small. Mark and Terri finished the Relay for Life this past weekend. Their team managed to raise $3245 in Jim's honor. Let's hope the American Cancer Society figures out the cure for cancer soon! Their good friends Chuck and Nicole (and their kids!) walked with them. We've only met Chuck and Nicole once. I know they agreed to do the walk because of their friendship with Mark and Terri. But that's a pretty big time commitment honoring someone they've only spent a few days with in North Carolina.

One of my college friends, Ben, and his wife Sherri, and their two kids also walked at the Relay for Life. Ben and Sherri didn't know if we'd be there or not. I haven't seen Ben in around 10 years. I haven't even met Sherri yet. You know how it is...you keep in touch for several years and then...things start to slide...you get busy, and the next thing you know you're down to exchanging Christmas cards. For Ben and Sherri to do the Relay for us...just meant so much. (As well as Mark and Terri, but we get the privilege of seeing them more often!)

It's also little things that keep us going: Jim's still getting weekly cards from Dave and Doris Carter, Ted and Tonia Dandrow, as well as his Aunt Debbie and Uncle Bill. It's friends who take Rachel for a playdate on a chemo week. It's tough for her to understand why Daddy's so tired. A playdate gets her out of the house and lets her play for real. It's friends who hold Jake for me when I'm feeling out of sorts and struggling to accomplish tasks with him in my arms. Which is pretty often. It's also friends that keep inviting me to things, even though I can't make it 90% of the time.

We have relatives that come to visit and watch the kids for days on end. Who get up with the kids and let me sleep in. Who fix dinners and take the kids to the park. Friends and relatives who give me nutritional support and advice when I'm at a roadblock. Some of you are brave enough to leave messages on our voicemail, which we always appreciate, although we're simply horrid at calling people back. Or send me an email, which I mean to respond to...as soon as I sit down and do something other than work on the blog or paying bills. I have friends that understand when I'm feeling lonely, and they're ready and waiting with wine and chit-chat.

It's the nurses that care for Jim, play with our kids, and welcome us at the Vince.

Although cancer is like a ball and chain for our family, it's not going to be forever. And in the meantime, we have the support of the quiet ones...people who pick up the ball and chain from time to time and carry it for us.

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.

The emotional rollercoaster clicks uphill...slowly

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

At least Jim's got a sense of humor.

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

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

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

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

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

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.

AAAAAARRRRRRRRGGGGGGGHHHHHH!

This poor guy can't get a break. Jim's had some pain in his calf since he returned home on Sunday evening. We thought he pulled a muscle while getting onto the boat this past weekend. It started out as a slight pain, and has grown increasingly worse.

Yesterday, Jim went to get his light therapy for the neuropathy, and explained the pain in his calf to our friend Ken. Ken did some tests and sent Jim up to Radiology for an ultrasound. (The Physical Therapy Department is also housed in the hospital, which is where he gets the light therapy.) So during the ultrasound they discovered that Jim now has a blood clot in his leg. Right now there isn't any blood moving through the main vein in his right thigh, which is why his calf hurts - there's not a lot of blood getting to it.

As you know, Jim developed a pulmonary embolism (PE) when he was first diagnosed. So we already knew he was prone to Deep Vein Thrombosis. But he's been on blood thinners since they found the PE, so we didn't think another clot was likely. Apparently we were wrong. We are thankful that Ken was able to diagnose Jim, and that we caught the clot before it broke off and made it up to his lungs. Apparently an embolism in the lungs can be excruciatingly painful, like having a heart attack. For whatever reason, Jim's PE wasn't that painful. But having blood clots move around the body is not a good thing - that's what can cause a stroke.

SO, NOW we're going back to the Vince daily so that Jim can have shots and daily blood tests. He's going to be wearing a compression stocking for the drive to Madison. (Pictures of that one to follow - I can't wait!) And he's got to stay off his leg. He's on crutches and he said that the pain is almost unbearable. He slept on the couch last night because he didn't think he'd be able to make it up the stairs.

The injustice of it all is what really gets to me. When is this guy going to get a break? Yeah, yeah, I know, life's not fair, blah blah blah. We're only dealt what we can handle, blah blah blah. We need some serious intervention in the fairness department. We need a miracle. Or a medical miracle. Or a self-generated miracle. Where ever we believe miracles come from - that's where I want one from. I won't be picky about how it arrives or in what format. The injustice really burns my shoes. No 37 year-old should have to say "Whew! Good thing we caught that blood clot in time so that I can get daily shots, after which I'll go on fighting my cancer while I can't feel my feet." The injustice of it drives me to tears.

One step forward, two steps back

I'm writing today with a bit of a heavy heart. This is the cancer dance. One step forward, two steps back. We were really riding high on the cryoablation wave, but we received disappointing news this week. Unfortunately, Jim is not responding well to his new chemo. He's had some disease progression. He's got a few new spots in his liver, and new spots on his abdominal wall. Needless to say, we are heartbroken.

We've had a little time to adjust to the news, and we're ready to keep moving forward. Of course we're disappointed, but I think forward movement is key in this scenario. So, that being said, we have an appointment in Madison on Thursday. Jim did not receive treatment today because if he's eligible for a new clinical trial, he needs to have a period of time between his last treatment and any new treatment.

We've opted to go to Madison at this point because they have more clinical trials available (they are very research heavy), and they have an excellent reputation. We are still working with Sloan Kettering as well, and at this point we're waiting to find out when they can schedule us for our next appointment there. We're also investigating other options - Northwestern, and possibly Mayo. We obviously think the world of Dr. Haid and the treatment that we're getting here. It's first class medical care; however, we still have to bear in mind that it is Sheboygan, and there are other things available at bigger centers. Dr. Haid has encouraged us to go back to Sloan Kettering. He's supporting us every step of the way with Madison, and anywhere else we choose to go.

The bad news is that we aren't going to get to hear "No Evidence of Disease" as early as we'd like. The good news is that we're not at the end of the possible treatment rope, we're just at the end in Sheboygan. And even then, we can make a few new cocktails of previously used drugs. But I think we're at the point where Dr. Haid would like to call in reinforcements.

So, we're off in a new direction. As far as we're concerned, things need to stay as normal as possible for the kids. Jim will still be going to work when he's not receiving treatment. Rachel will continue with ballet and Jake will continue screeching while he gets new teeth. I will continue bossing everyone around, as usual. I think the normalcy and routine is one of the most important factors in our overall quality of life. Life goes on. Cancer will not stop us. Cancer may try to set up roadblocks, but we will persevere. And we will win. Not winning is not an option for us.

Disease progression causes a flood of new fears. It brings back a lot of the fears we had when Jim was diagnosed. But I think the thing to remember is that overcoming the odds and perfection are two of Jim's specialties. My number one fear at this point is that Jim will lose faith or fall into depression. This is sort of like kicking a guy who is already down. But obviously cancer doesn't know who it's dealing with. It picked the wrong household. And it doesn't get to stay for long.

The Sound of Silence

Do you know what I'm doing right now? Eating sunflower seeds, drinking a Diet Coke, and listening to the Grateful Dead. Do you know why? Because I can. There's no one here asking me why we can't listen to Raffi. No one staring thirstily at my Diet Coke. No one telling me that sunflower seeds are gross. I am alone.

Jim left with the kids this afternoon to drive up to my parents' cabin. As I buckled the kids into the car, I realized that I was incredibly sad, and incredibly happy that they were all leaving. Mostly I was nervous about Jim making a four hour drive alone with the kids. If all goes well, they can make the drive in about 4 1/2 hours. If things don't go well, it could take a lot longer. I've had rides with Jake that totaled almost six hours. If that happens to Jim, I'd be so upset. He was concerned about driving that far because of his back.

I called him a few minutes ago and they're already half way there. No freak-outs from the back seat yet. He was even feeling optimistic enough to push past the half way mark before stopping. Amazing. It's amazing what the call of the North can do. It's a very relaxing atmosphere up there. My parents have the unique ability to pamper their guests in all sorts of ways, including a ridiculously big bowl filled with M&Ms, fluffy comforters, cookies that are as big as cakes, Adirondack chairs, gourmet dinners, fresh air and quiet forestland, endless hot water for showers and baths, and movies galore. I just find it humorous that we spend more than 4 hours driving, hunched over the steering wheel and listening to "Barney's Musical Scrapbook" over and over again, so that we can decompress.

I'm going out with some girls tonight to a new bar in "downtown" Sheboygan that is smoke-free and serves really fruity drinks with umbrellas in them. Yippee. And then, guess what? I get to sleep in as late as I want tomorrow.

I might just crack open a Diet Coke for breakfast. Because I can.

When am I going to hear "Lola"?

Today was a stressful day. They've assigned Jim another scan on Thursday. He's going in so they can take a look at the area where he's experiencing all the abdominal pain. And we found out that his CEA level is elevated. We're not too riled about that, because an elevated CEA can mean a lot of things, especially after a surgery. It could be that the cryoablation is wreaking havoc on the tumors, and sending nonsense into his bloodstream. Who knows.

We also went to see the therapist together today since we got this news about the scan and the CEA level. That went well. I can see why Jim likes her. She's very soothing. Although I have no idea what Jim talks to her about for an entire hour. It seemed like she was pulling teeth to get him to talk. He prodded me to do a lot of talking. I couldn't tell if he thought it would benefit me to talk, or if he just didn't have much to say. In any case, it was a successful visit and I think she's doing Jim a lot of good.

And, good news: the infra-red light therapy already seems to be having a positive effect on Jim's feet. We're waiting for more conclusive results, but he said that his feet already feel different. If this light therapy works for Jim, the Physical Therapy Department is going to be absolutely flooded with patients from the Vince.

Through all this, one of the things that goes through my mind is "When am I going to hear Lola?" Lola, by the Kinks. Since college, Lola is my lucky song. I almost never hear it, but when I do, I know something HUGE is going to happen - something positive. The last two times I've heard Lola, I've been pregnant with our kids. I never once heard Lola in between the kids, and I haven't heard it since I got pregnant with Jake. The whole time we tried to get pregnant with Jake, which was over a year, I never heard Lola. I finally heard Lola, and ta-da! Baby on the way. There is a rule to my superstition, of course. I can't cheat and play Lola or request it on the radio (does anyone do that anymore?), but I can listen to anything else by the Kinks.

I know it's a silly superstition, but I can't help but tuning in to listen once in a while when I'm in the car alone. Before each scan I hope and pray that I'm going to hear Lola. Before each visit or surgery I hope that I'll hear Lola. And nothing's happened yet. YET. So what I'm thinking is going to happen is that I'm going to hear Lola just before my favorite words, "No Evidence of Disease". The day I hear Lola (or No Evidence of Disease, whichever comes first) will be a huge party.

The day I hear Lola we get to book our tickets to Hawaii. Jim gets a pot rack. I will massage his feet for the rest of his life. (Ew.) And we will hear "No Evidence of Disease". It's a lot to pin on a song that has completely inappropriate lyrics for the backdrop of our lives, but hey, superstitions don't have to be logical, do they?

Putting it all out there

I guess you never really know how your going to handle a scenario like this until you're in it. Cancer brings out emotions and behaviors that I didn't know I was capable of. In some ways, it's been good for me. In some ways, not so good.

The good things I've found:
1. I am capable of more strength than I thought
2. I am capable of managing my family on my own, although I prefer not to
3. I am capable of operating the lawn mover, edger, and a sawzall
4. I can prepare some darn healthy meals

The not-so-good things I've found:
1. I'm pretty weak sometimes
2. I have no patience and I need immediate gratification
3. I get angry - really angry - if I try to do and don't succeed at something Jim normally does
4. I don't do well with any kind of restraint - physical or emotional

One of the things that continues to surprise me is the fact that I proceed with the blog as flat out openly as I am. Truthfully, that's just me. My life is a literal open book. Cancer or not. Jim, not so much. I've often wondered if Jim is mortified by some of the things I write on the blog. He's a much more private person than I am. He always reads the blogs before I publish (or immediately after so I can retract if I need to), but he hasn't stopped me yet. And though the blog is half fluff, half information and emotion, it's sometimes hard for me to write. I'm trying to give everyone an accurate picture of what goes on at our house, because there are so many happy times. And although not every moment is blissful, I believe that we are moving forward in a positive manner.

Cancer has taught us that it's not about the cancer - it's about us and our family. How we respond to cancer is a reflection on who we are and what we're about. So, if you didn't know about my many neuroses before, you definitely know now! I find it humorous that I'm so nervous and insecure, but at the same time I'm willing to put it all out there. Jim is the confident one in our relationship. His natural assumption is that people like him. And why not? He's Jim. Who wouldn't like Jim? My sister-in-law Judi said it best: "It's like dating the high school quarterback", except not nearly as dreadful as high school thank heavens.

I guess the things we take away from cancer are most definitely humility, generosity, strength, and love. When we look back on this year, I'm pretty sure we'll use it as a yardstick to measure every other little bump in the road. "Is it as bad as cancer? Nope. We'll get past it."

Cancer will never have a place in our lives, except as a memory and as a troubled-time yardstick. Opening up our lives and sharing our emotional journey through this has been so good for us. I believe the blog is a true reflection of who we are: a happy, whole, loving family.

Double Brats - Summer in Sheboygan

If you snort in blanched humor when you hear that we live in Sheboygan, join the club. After all, it's just funny to say Sheboygan, isn't it?

Outside Wisconsin, Sheboygan would be synonymous with podunk. Teensy. But in reality, Sheboygan is closer to a resort town.
It's really nice to live here thanks to Elkhart Lake, The American Club, and a couple of other really big resorts. Sheboygan is actually considered a "getaway" for people from Chicago that think driving two hours north of them is considered "Up North". (They obviously haven't seen where my parents live...now that's Up North!)

Anyway, one of the things that Sheboygan is famous for is bratwurst. If you've never had a bratwurst or worse yet, don't know what one is, shame on you. Wisconsin is all about bratwurst. Sheboygan is home to Johnsonville Brats, Old Wisconsin, and a few other brat stops, including Miesfeld's Meat Market, which is actually included in the Sheboygan Chamber of Commerce Tourism Guide. To Miesfeld's credit, they do have an impressive selection of more than 30 kinds of bratwurst. Any town that features a meat market in their tourism guide must really love their bratwurst.

Sheboygan was actually featured on ESPN last year for the giant Johnsonville Brat-Eating Contest that takes place the first weekend in August. (Associated with an entire weekend festival called Brat Days.) These people are serious about their brats.

So it should come as no surprise that today's pictures feature our family enjoying what else? Brats. Double-brats, in fact. (Which are two bratwurst on a single Sheboygan Hard Roll.) And beans. And potato salad. We like to celebrate summer with bratwurst. The first grilled brats of the year are always a symbol - we're done with winter and onto warmer weather, shorts, and flip-flops.

Jim is having a pretty good week. He's getting infra-red light therapy for his neuropathy. He's excited about that because he'd love to get the sensation back in his feet, but also because it means that he gets to hang out with his friend Ken. He's not nauseated. He is tired, but he's not bone tired. And the pain in his stomach...that's still going on. But they've given him permission to take painkillers and that seems to help.

We celebrated the end of Jim's chemo week with brats, beans and potato salad from the Kohler Firemen's Brat Fry. Dinner is always better when you don't have to cook it.

Things are so-so

Jim's doing okay this week. He had chemo Monday and the pump came out today. Tomorrow he goes in for the injection that increases his white blood cell count.

The good news about this week is that Joan (the chemo nurse) told him that the rash is always worst the first time, and then your body adjusts. Jim was worried that because the rash wasn't as bad the second time that the chemo wasn't working as it should. Turns out it is. Thank heavens Joan told him that.

We got last week's scan results back, and Dr. Siddique said that things are "grossly stable". Okay. Well, that's about what we were expecting.

The bad news is that Jim is in some pretty intense pain in his abdomen, and we're not sure why. They can't see anything on the scan. The pain gets so bad that sometimes he has to stop moving, and he spends a lot of time resting just to avoid the pain. He's rating the pain between a 6 and 7, which is not good. They've given him the go-ahead to use painkillers for his abdominal pain, so that seems to be helping a little bit.

Jim is really run-down right now. This chemo makes him so tired he can barely move. And he's pretty depressed. The problem is that there isn't any real end in sight. It would be one thing if they said "6 months and you're done", but we're meeting with people at the Vince who have been receiving treatments for years. Jim has been seeing a counselor that specializes in cancer, and I think that's been very good for him. It's hard to win a race when the finish line keeps getting pushed forward. And as far as friends and family go, it's pretty tough to cheer someone on, knowing that the finish line just moved again. It's tough to find encouraging words when I'm bewildered myself. When is this going to end?

I think the worst part is watching Jim hobble. He's literally hobbling at times. He can't feel his feet because the neuropathy is so bad right now, and he's bent over because of his stomach pain. Then his back hurts because he's bent over. This is not the super-strong, flannel-wearing, make-something-in-the-basement Jim that I'm used to. I want my Jim back. I want to see that lovely shine in his eyes when he knows he's saying something funny. I want him to have carefree days when he's not crippled by chemo drugs. And I want him to be able to enjoy this summer - to sit out in the sun, walk to the park with the kids, fire up the grill, and mow the lawn in typical Jim fashion.

I know it will happen. I just wish chemo drugs came with a big expiration date stamped on them: {Guaranteed to present No Evidence of Disease by 6/30/07}. That would help us make it to the finish line a lot faster.

The shortest weekend

Last weekend, our friends Mark and Terri brought their boys, Edward and Colin, out for a visit. We had a marvelous time. Mark and Jim are friends from childhood, then high school, then college. Terri and I have gotten to be good friends as well.

Moving to Wisconsin was a great move in every way, except one. Before we moved to Wisconsin, we saw Mark and Terri at least once a year. Our last couple of years in Atlanta, we drove to the Outerbanks of North Carolina and rented a house with Mark and Terri for a week in the summer. It was great - they drove from Philly, we drove from Atlanta, and sort of met in the middle.

Now that we're in the "midwest" which is code for "middle of nowhere" it's a lot harder to get to the Outerbanks. And we all know what a chore it is to fly with kids. We were delighted when Mark and Terri asked if they could come visit. Mark is a pretty funny guy - I knew it would be great for Jim's healing to see him. And for me to see Terri. She and I seem to be on the same page on most things, so we never run out of things to talk about!

Terri made dinner both nights (and yes, Jim ate everything), and we drank wine, hung out, and did...nothing. I honestly believe it was one of the shortest weekends of my life. Closely akin to the hour that LOST is on. Why is that hour shorter than every other hour in the day? Why was this weekend so short? I refuse to use the cliche "Time flies when you're having fun", but...it does seem that way.

Edward and Rachel got along famously. Jake is bigger than Colin, who is 5 months older than Jake. Figures. But Colin is walking and can keep up with the best of 'em, so he gave Jake a run for his money.

I hate it when a weekend goes so fast. I was sad after they left. I'm still sad, and it's already Tuesday. There just isn't enough time, is there?