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.

Holy s%^&

Holy S#$% were the first two words out of my mouth in the doctor's office today. Well, actually my first words were "Hello Dr. Holen." BUT, after that, you wouldn't believe what unfolded. Dr. Holen came in, said "Yep, we need to change your regimen. Your doctor was right on the money." THEN he said "I actually can't believe you're here today. The trial that you're interested in is opening back up tomorrow. There are only 19 spots open worldwide. I think we can get you in."

Our jaws dropped. We were speechless. (Well, Jim was...I was for only around 3 seconds before I said "Holy s#$%!") Even Dr. Holen seemed pretty stunned at the timing of it all. Or he may have been stunned at my bad manners. But I apologized profusely. And wouldn't you feel free to take a little poetic license if all this happened to you? Not just the pressure of cancer, but the events that have happened in the last week or so? Come on. Admit it. It's more than a little wierd. It's Godsent.

We were on edge while driving down to Madison. We just didn't know where it was going to go. Dr. Holen said that we could most definitely try the traditional chemo cocktail, but they are all pretty much drugs that Jim has tried but haven't been stunners. Of course making a different mix could change how they work, but the trial drug that we're interested in is something completely new. This is a drug that works in a totally different way, and that's what we need right now. We can always pull out of trial and go back on traditional chemo.

I can't escape the overwhelming feeling that we're being led in this direction. Maybe I'm grasping at straws, but at this point, I need something to believe in. I think we all do. I believe that Jim is in a better place mentally. He's up to the fight. He's ready to continue on treating the cancer aggressively. It's chances like this...it's being in a good mental place...it's the potential for complete healing. We can continue on. We can keep going. We can win.

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?

Getting our ducks in a row

More in the series of unusual events designed to steer us in the right direction. The airline cancelled the flight that Judi was supposed to take home tonight. She's leaving tomorrow morning instead.

We were originally scheduled to meet with Dr. Haid tomorrow afternoon, but we were able to move Jim's appointment to late this afternoon so that Judi could come with us. I called UW Madison this morning. They are seeing Jim this Thursday. I called Mayo this morning. They are seeing us next Thursday. My mom will watch the kids this Thursday, Jim's parents will watch them next Thursday.

Today we spoke with Dr. Haid about next steps, asked him about a few traditional treatments, and we asked for his help in scheduling our next appointment at Sloan Kettering. (There seems to be a slight technology error with getting our appointment there, as they are not receiving our updated records and will therefore not let us make an appointment.) Dr. Haid likes one of the traditional treatments...combining a drug we haven't tried yet, Xeloda, with irinitocan (one of the drugs that Jim is on now), and Avastin, which Jim was on during his first course of treatment. Xeloda is the same drug as 5-FU, which Jim is currently getting. BUT, Xeloda is a pill, and right now Jim is getting the 5-FU in a pump. Switching to Xeloda would make a big difference in Jim's quality of life because he truly hates wearing the pump. We also discussed an experimental drug that we would have to apply for through the National Cancer Institute, although we're electing to discuss this with Madison since they are the ones running a clinical trial on it. (That's the one that Jim's cousin David is helping us with.)

Once we have all the opinions, we'll be working with Dr. Haid to determine the best course for Jim. We also found some interesting articles from MD Anderson (a big cancer hospital in Texas) so we can even go out there if we need to. Right now it seems that working with 4 different facilities is probably enough, but hey, you never know. :)

Jim's going up and down mentally, but he's 100% better than before his sister arrived. His pain is under control. She's even gotten him to walk to the corner twice. We're hoping to get him over to the Kohler pool this week. I am feeling a little more in control now that we have some of our appointments lined up.

Sometimes it's hard to be in this scenario, but I also realize that we are lucky - so far, our insurance company has paid for everything. We have the means to pay for a few other things. And we're doing it while sitting in our own home - there are other people diagnosed who have no one, no support network, no insurance, and no financial base to carry the rest of the burden. Even in the midst of this confusion, we can still count our blessings, be thankful for the things we have, and thank God for every day that we have together. The road may be long and the cross may be heavy, but we're thankful for the friends and family we have to lighten the load.

On another note: today may have also been one of the more remarkable days in the journey. We received a sizable box from my girlfriend Julia, who lives in Germany. She sent approximately six pounds of pure heaven (no, not wine...she can't send that through the mail) - but she did send chocolate. And, not knowing what my preference is, she sent a wide variety. Miracles do happen. I'm counting my blessings and they are many and varied.

Like I said, no where to go but up

Well. A series of events has kicked off that I believe to be profoundly significant for us. Yesterday, our pastor came to visit us because he's read the blog about Jim's mental state. Fortunately for us, Pastor Kirby is a man of action and asked if he could come visit rather than waiting for us to call. Good idea, because we just didn't have the wherewithal to make the call ourselves. We had a wonderful meeting with Pastor Kirby. He renewed our faith. We needed it.

The kids and I picked Judi up at the airport this morning. 15 minutes after Judi walked in the house, she got Jim to admit how very bad the pain is. We called the doctor's office to figure out some other pain medication combination. While on the phone with the nurse practitioner, Dr. Haid ordered a scan for Jim, STAT. He was concerned that the pain in Jim's stomach may have been due to an abscess.

We got the results back tonight, and although he does not have an abscess, unfortunately there is some growth on the existing tumors in his abdomen and there is a new growth. We are not happy about this; however, I believe this series of events is a sign. It's time to move forward. To stop the current chemo regimen and start something new. To figure out the next plan.

We have an appointment with Dr. Haid on Tuesday afternoon. Monday morning we'll begin making calls and trying to move up our appointments with Sloan Kettering and Mayo. We may also bring Madison back into the picture, as they are an excellent resource for clinical trials, they are within driving distance, and the Mayo Clinic flat out told me that Madison is an excellent place to go.

Although we are disappointed, we are pushing on and looking for something new. Jim's cousin David is helping us out. He is working with his government and pharmacuetical contacts to determine what clinical trials are available and what's the latest and greatest. There are other drugs and other treatments available to us, it's just a matter of finding the right match for Jim.

I believe that Judi's visit is impeccable timing, as we were able to go to the hospital for the scan immediately after Dr. Haid ordered it, and left the kids with Judi. If Judi hadn't gotten the actual pain situation out of Jim, we wouldn't have called the doctor's office. Jim would have truly suffered through the weekend. If Dr. Haid was a lesser doctor, he would have taken a "let's wait and see" attitude. Clearly this scan tells us that his current chemo regimen needs to be changed. If we had waited for the next scan, we wouldn't have found anything until August, and Jim would have gone through these chemo treatments for no reason.

Getting hysterical and losing control is not practical at this juncture. This is disheartening, definitely. But as I mentioned before, we've been at rock bottom since a couple of days ago. We are taking this news in stride and we are ready to move on. Many people have suffered through multiple setbacks to beat the cancer later. I still believe that this will happen for Jim. No one else is like Jim. There are few people on this earth that are as wonderful as Jim. We need him here. We have faith, we have prayer, and we have a support network that is stronger than alloy metal. Plus, Jim is surrounded by B.O.S.S. - Bossy Older Sister Syndrome. If he stumbles, we'll pick him back up, dust him off, and keep going.

Thank you so much, all of you, for your calls, presents, letters, cards and prayers. Please understand that we cannot express our appreciation enough - but we are not making many phone calls at this point. Jim is not able to do much because of the pain, and my first truly free moment typically occurs at 10:00 pm. We love hearing from you. It means so much to us. Please don't be put off by our bad manners. I used to be the thank-you note queen...that's one of the first things that I've dropped off. So many of you have offered to visit us and help out at home. Although Jim doesn't have the strength for visits, we are trying to figure out a solid date in July when we can visit and meet with people in Rochester. Judi has graciously offered her home (and her pool, as an added incentive) for an open house. We'll be posting the date that we'll be in Rochester as soon as we know solid plans. We're shooting for the week of July 23rd.

Regarding my last two posts: we are still at rock bottom, but we will persevere. There are still so many rounds in this fight. And although the grass may be greener on the other side, our side of the fence is still pretty darn good. I just know in my heart he will beat it.

The grass is always greener

We've been living in Kohler for almost 2 years now. I hope I've painted a pretty good picture of Kohler - it's an enchanting utopia that borders on Stepford. In a good way. I wouldn't trade Kohler's charm for anywhere else in the world. (Except Ireland, but that's another blog.)

Kohler is home to, of course, The Kohler Company. But for those of you that don't know, the enormous Kohler conglomerate includes The American Club and Kohler Waters Spa, which together make one of the finest resorts in the United States. Kohler is surrounded by Kohler owned golf courses - the US Senior Open will be here this summer. The American Club is one of the most classic, beautiful hotels you could ever hope to see. Frederick Olmstead, the designer of Central Park, designed Kohler, "A Garden Community". The Kohlers don't fool around - they do everything first class.

So you can imagine that everyone in Kohler, for the most part, keep their properties in top form. Weeds are not welcome inside the Kohler borders. It's frowned upon to let your grass grow too long. Shame on those that don't use Weed and Feed. Each little house has a small yard, and most are surrounded by beautiful gardens. When I look down the street, I see yard after yard of beautiful green grass.

We purchased our Kohler house based largely on it's potential. The gardens surrounding our house were wild, bordering on out of control. According to neighborhood lore, the previous owner was attempting to make the house look like a French chateau. The more traditional houses don't really lend themselves to the wild look, although I respect the previous owner for her dedication to planting. We pretty much sent the neighborhood into a tizzy by ripping out almost all of her hard work. It was just so overgrown that starting over was actually the easy route. The lawn also needed a lot of work - the previous owner didn't like to use Weed and Feed because she had a dog. (We don't care about Palmer and Major's health.) A few of the neighbors are still divided on what we've done to the house, but if you look around, our house now matches the others. It's more "Kohleresque".

We've put a lot of sweat equity into this house, and it's worth it. The neighborhood is worth it. Every Friday and Saturday night, the guests at the American Club are treated to horse and carriage rides around our beautiful historic neighborhood. Our street is on the route. The carriage rides are so quaint that we are delighted to be on the route. The kids go crazy when they hear the horses coming. It's one of the fun things of summer - holding a drippy popsicle and waving to the riders.

All this is my elaborate (and rather long winded) explanation of how a green lawn makes a difference in this neighborhood. I was green with envy (no pun intended) at the lush lawns surrounding ours. That's why cutting our lawn is such a big deal for me. Over the last several weeks, I've noticed improvements in our lawn. It's quite green. And I've become rather brazen with the mower - I cut all sorts of patterns in the grass. (My neighbor across the street is my idol - no one cuts on the diagonal like Brian!) I actually giggle as I cut the patterns - all proud and thinking I'm comical.

Now, all that being said, a couple of days ago I received the biggest compliment of the summer. The most admired lawn in Kohler (not to mention the gardens, which are out of this world) is two doors down from us. So you can imagine my pride when the owners of that lawn walked down and told me that our lawn is looking very green. My heart almost beat out of my chest I was so excited.

Everyone around us has wonderful green grass. The grass may be greener on the other side, but honestly, there isn't much I'd change about what we have. Jim and I have worked hard to build the kind of life that we want. Including a village house with a green lawn. We have earned every single thing we have every single step of the way. We've toughed it out through thick times and thin times. I truly wish that Jim wasn't stricken with cancer. But other people have other crosses to bear, and there's no way to tell what kind of cross they are carrying. One of my Mom's favorite sayings is "you can't tell what goes on behind closed doors". The guests at the American Club that take the carriage ride on Friday nights don't know what we're dealing with. They look at our pretty house and our green lawn and could quite possibly have a little lawn envy. They could also be admiring the wave I cut into the lawn last week.

The grass may be greener on the other side. But our grass is getting greener by the day, and when all is said and done, we'll stay on our side of the fence.

No where to go but up

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

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

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

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

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

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

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

Things are pretty much the same

We're riding on a flat wave here at the Marventano household. Jim has stomach pain. He still can't feel his feet. His skin is starting to get rashy (yippee!).

This weekend, Jim went on his annual fishing trip with the Musky Marauders. They've been doing this trip for years - like...20 years. Jim was initiated the year we were married. (Which was 12 years ago today.) Lucky for me, the Marauders moved the trip to August the year we were married, but have commenced with the trip in June ever since. Jim hasn't ever missed a trip. He didn't even miss the trip when it was scheduled a mere week after Jake was born. This is Jim's trip.

I was a little concerned when he finally admitted that he didn't think he could make the drive alone. It's a four hour drive Up North. But that's one of the privileges of being a stay-at-home-mom: every day is Saturday. So we drove him half way there, and my Dad drove down to meet us.

He had a great time. He got to go scuba diving. He got to do several fun activities with the Marauders, including attending the initiation ceremony and a picnic. These are all really great strides forward because Jim has been more and more sedentary. He's been so immobile in fact, that I decided it was time to call in the big guns and ask his sister to come for a visit.

Judi has been trying to encourage Jim to exercise a little more. It's tough to do that over the phone or email. And he's at the point where he's just flat out tuning me out. I know it hurts him to exercise (or move, sometimes) but things seem to be getting out of hand. Sometimes I worry that his muscles will begin to atrophy. Of course he's not any more sedentary than around 60% of America, but I worry because he was active, and now he's inactive. I also worry because before he left for the trip, he really wasn't getting a lot of fresh air, which I believe to be crucial to mental well being. I couldn't even convince him to walk around the half block (we have an alley). So, all that being said, I figure if Judi can get him to eat green beans, then she can most certainly get him out the door for a walk.

A couple of years ago Judi started running. She started really running. She's logging some serious weekly mileage. The first time she came to visit us after she started running, she didn't miss a day of running. And let me tell you, she looked good. The moment she left after the visit, Jim and I started scrambling around for our running clothes. Envy can push people to do some things that are good for them. My hope is that Judi will once again give both of us that inspiration. Jim needs it. I need it. I'll start as soon as I put down my wine glass. No really, I will. Just give me a minute. Another minute. One more sip....

Tomorrow is a chemo day. Jim meets with Dr. Haid, which he is a little nervous about. But it's a routine chemo day, and there's at least some predictability in that. Judi arrives on Friday morning. Thank heavens. I need some reinforcements. Jim needs some love and some real encouragement. And maybe a kick in the heinie to get him out the door. It's got to be hard to get moving when he's in so much pain. But sitting at home thinking about the pain has got to be exacerbating things. I'm not making him do tai chi or mall walk anymore, but I'll be darned if he's allowed to just sit on the couch. He's got to use activity to help get himself to a better place mentally. He needs the boost. This weekend was a great start, but it just isn't enough. I'm putting money on his sister getting him moving. No pressure, though, Jude. ;)

Mental Note

Drinking w-a-y too much wine and talking loudly doesn't cure cancer. I can say that with a very high degree of certainty. In fact, it doesn't even dull the fact that my spouse has cancer. Shoot. I'll have to think of the cure for cancer some other way. I've tried the red wine thing too many times. It just doesn't seem to be working.

Too much information

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

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

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

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

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

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

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

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

Happy Birthday to my Jakers!

Wow. This was most definitely the longest and the shortest year of our lives. On June 5, 2006, we were blessed with Jake's arrival. Actually, on June 5, 2006, Dr. Cleveland helped bless us with Jake's arrival, because I didn't want him born on June 6, 2006. (Otherwise his birthday would have been 6/6/6, which was just...too much for my fragile psyche.) His due date was June 4, and I just couldn't take a chance. Jim thought I was silly, and I knew it was silly, too, but I just couldn't get past the date. I needed to have him before the 6th. Looking back, I thank heavens every day for that silly choice. We've already established that I'm more than a little superstitious. After all, I'm basing hearing the words "NED" on hearing the song "Lola".

When I look at the pictures of Jake's birth, I realize what a pure, wonderful moment that was. We were on the second floor of Aurora Memorial Hospital. The same floor where they later gave us the bad news that Jim had cancer. You know - when you have a baby, and it's a good experience, you think you're the only ones. The only ones to experience that joy. The only ones having a baby at that moment. The only ones on that floor of the hospital. But even in Sheboygan, the hospital is a busy place. When I look at it now, I realize that on that same day, there were people on that same floor getting bad news. Cancer. On the day that we got our bad news, there were babies being born to other happy parents. Right down the hall.

In fact, before we knew what was wrong with Jim, I brought Jake down to the maternity ward so the nurse who helped deliver him could meet him again - at 3 months old. She probably thought I was nuts. But we had such a great birth experience - I just wanted her to know how much it meant to me. To all of us. It was such a perfect day, in fact, that both of my parents were also there. Even my Dad. Dad has a nervous habit of joking at the absolute most inappropriate times, but given that I had Jake without drugs, I think he was just stunned silent - he did manage to get some amazing pictures, though! My Mom was there, as the ultimate comfort, to hold my hand and put cold washcloths on my head. And Jim held my other hand. He rubbed my back. He walked with me. And he coached me through every step of the way. He was my rock. He cut the cord. He was the first to hold Jake. He's quite possibly the Best Daddy Ever.

Jim was diagnosed when Jake was only 3 months old. At the time, we honestly wondered whether or not Jim would even make it to see Jake's first birthday. A silly notion, looking back, but we had no idea what cancer meant. We thought cancer meant it was the beginning of the end. And we didn't know when the end was coming. Of course, we still don't know, but now we have enough nerve to look to the future and plan for things.

And we were just waiting for Jake to arrive. Jake is the perfect addition to our family. At only 3 months, it seemed like he'd been with us forever. He's had finesse and personality since he was an infant. He looks like his Daddy and laughs like his sister. (They both have a laugh that is strikingly similar to that of a nervous Mr. Bean.) He's a complete Ladies Man. And he loves to be funny.

I can't believe a year has come and gone. Although it was one of the worst years of our lives, it was also one of the best years of our lives. We are blessed with two beautiful, healthy children. We are blessed that Jim is able to see Jake develop and grow. We are blessed that Jake has a wonderful big sister to help him navigate the world. We are blessed to have our little family intact, to share important dates, events, and milestones.

When I look back on the last year, there are some things that I wish could have been different. Of course. But there are some things that I will cherish and hold on to forever. Jake's birth and first year were a time of true happiness and tremendous gifts. For every treatment or sickness, there has been a new milestone or small accomplishment. Jake started crawling immediately after Jim's cryoablation surgery. For every pill or pain medication, there's been a toothless, drooling smile. We've been blessed by the two greatest gifts ever. Rachel and Jake are what keep Jim going. They are the light at the end of the cancer tunnel. They are the sunshine in our days and the light of our lives. I thank heavens we had this blessed boy, born on June 5, 2006.

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

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

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

Best to keep it simple, right?

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

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

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

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

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

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