Angels in Flannel - or something like that

Well, they say it takes a village. Today half the village of Kohler and several guys from our church came over to paint our porch. Last summer we did A LOT of work on the front of the house, and we painted the front of the porch to make it presentable. We left the side and the back of the porch unpainted, as well as one of the windows on the other side of the house.

When our friends Ken and Biz offered to paint, I pretty much pictured...well, the two of them painting. Boy was I wrong! TEN GUYS showed up to paint today. I almost fell over. It's not that ten of them showed up - it's that ten guys organized to all be in one place that didn't involve poker or football. Just kidding. I was just bowled over by the outpouring of friendship (guy style) and just downright goodness.

So today, eleven guys (eleven counting Jim Sr.) - Ken, Biz, Sandoval, Jay S., George, Brian, Chris, Jay M., Dave, and Mark all showed up to make our porch look respectable. It was like an episode of This Old House. These guys were amazing. Working in unison, eating lots of food (planned and delivered by their lovely wives), and listening to 80s music. They removed all the old screens (damaged from the vines the previous owner had let grow onto them), painted everything, built new screens, fixed the porch door, painted the exterior door on the top of the porch, painted the entire top of the porch including the spindles, and painted the window on the other side of the house. And the window on the other side of the house was no easy feat - second floor, only to be accessed from the right (plus the fact that no one was left-handed) on a very high extension ladder placed on a muddy patch of garden. And when they were done * poof * everything was cleaned up like they'd never been there.

I know I said it today guys, but thank you. Thank you to you and your families, who all gave up a full Saturday to paint our porch and check our biggest task off our list. Angels come in all shapes and sizes. Today they came dressed ready to paint.

Stent went well

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

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

Then the procedure.

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

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

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

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

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

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

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

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.

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.

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.

It's a beautiful day in the neighborhood

Laugh if you will, but Wisconsin is the BEST!

It was sunny and 70 here today, with a slight breeze. We went to church and ate brunch out. At church, a friend mentioned that another friend of ours might have a return bout of cancer. This friend (we'll call her S because I haven't yet asked her permission to write about her), is one of the happiest, best, friendliest, coolest people I know. And she's only an acquaintance.

The day I met her, we started talking about Jim's cancer and she told me that she, too was a cancer survivor. She's been cancer-free for 5 years. You know how you meet someone and you instantly know there's a connection? She's one of those people. For me and for Jim - she's really awe inspiring with an attitude and sense of humor that cannot be beat.

So we got word today that S may have cancer again. We immediately went over to see her, and as it turns out, she's still waiting to hear. Argh. The waiting is the worst part. She doesn't get her scan until Thursday of this week. She won't have her results until MONDAY the 30th. That is just NOT right. Can you imagine sitting around for the next week, wondering if you have cancer?

I was glad we went to see her. We wanted her to know that she's got our support all the way. She just seems like one of those people we're supposed to know. I'm not sure why, but I'm certain that the reason will present itself over the next year.

After we went to visit S, Rachel and I shopped a little, picked up grass seed, and came back to putter around the yard. She played with the girls next door while I started spreading grass seed. It was a lusciously sunny day. There's nothing like the first day that really feels like summer. Our neighbors set up their trampoline and the girls exhausted themselves "helping" and then finally jumping.

Even Jim and Jake were able to get in on the action after their afternoon naps - they came out and sat outside with us to get a little Vitamin D into their systems. Good for both of them. Jim, because he's cooped up, and Jake, because he's pasty white like me.

While the girls were jumping, I got bored of grass seed (see Headless Angel), and went inside the house to start dinner.

That's the kind of place Wisconsin is. Sunny days, and lots of them. We're able to let our kids play outside without watching every single step they take. We're able to easily connect with other people who might need our support through cancer (or better yet, though a cancer scare, but a benign tumor), able to hear that a friend might need us through another friend at church.

Cancer sucks. We know it does. But I am constantly reminded that we are in the right place at the right time. When he beats it I'll bet Kohler will do something totally Norman Rockwell like have a ticker-tape parade or something like that. Don't laugh - it's Wisconsin.