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.

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.

And *this* is Babette

You might remember from one of my previous posts that while in Mexico, Jim and my father went on more than 10 dives. You also might remember that I said that I plan to get dive certified because I saw pictures of their dive instructor, Babette.

Since that post, I've received several requests for the pictures of Babette. Well, it turns out that Babette wasn't in any of the pictures, she was on the dive video. Lest you all think I imagined Babette while Jim was baking away in the warm Mexican sun, my sister-in-law graciously agreed to fiddle with the DVD and extract pictures of Babette. So without further ado - my reason for getting dive certified...

If you can't figure out which one Babette is, put your glasses on.


While Babette isn't any real threat since she lives in Mexico, (and she really wasn't interested in anything more than teaching them to dive) it's more or less the possibility of other Babettes. I hate that Jim shared this awesome experience with someone other than me. I'm jealous that his 400 cancer-free minutes weren't with me there. I guess this was a vacation from more than just cancer - a vacation from everything, including me, the kids, Wisconsin, doctors, hospitals, and reality. I hope he enjoyed it, because it's the last one he gets to do without me tagging along.

Not only that, but to further perpetuate my paranoia, Jim's friend Tom sent him a DVD called Into the Blue, starring Jessica Alba. Jessica Alba in the world's smallest bikini. Great. About 3/4 of the way through the movie one of the girls gets her entire leg bitten off by a giant shark and dies. It might be my imagination, but I swear there's a conspiracy against me in the works. First Babette and now Jessica? How much can one girl take?

Emend is the key - and The Secret

While in New York, Dr. Kemeny recommended a new anti-nausea medication for Jim called Emend. He started it Monday...and it works like a charm! Although he's still experiencing waves of nausea, this seems to be the medication that works for Jim. He's still mixing it with Zofran, Kytril and Ativan, but he got to take Compazine out of the anti-nausea regimen.

These aren't fun cocktails with little parasols in them, huh? Eventually we'll get to replacing Emend and Zofran with pina coladas.

Jim and I are newly in love with a concept called the Law of Attraction. For those of you who didn't see it, Oprah featured a DVD called The Secret on her show, which my parents gave us for Valentine's Day. The general concept of The Secret/The Law of Attraction is that whatever you focus your energy on is what naturally comes to you. For example, if Jim thinks "I'm sick and I'm never going to get better", he's right. But if he visualizes himself as completely healthy, he will gradually regain his whole health.

One of the suggestions on The Secret is to goal set. Focus on something positive that you would like to come to you. Whatever it is, it may not happen in a week, or even a month, but eventually you'll attract whatever you desire. Jim and I decided that our goal setting would be in the form of pictures. Jim's having a little trouble focusing on small print and reading. So we decided to make a goal board that highlights the things we want, including:
1. Complete healing for Jim
2. A vacation someplace warm to celebrate Jim's complete healing
3. Conquered clutter in our home (our dining room table is currently an eye sore like no other)
4. A new washer and dryer for me :)
5. A new planer for Jim (that's a woodworking tool)
6. Jim walking Rachel down the aisle at her wedding

Our new goal board has a prominent place in our kitchen as a constant reminder of the things we're working toward. We've got more goals on the board, but our number one goal is living a healthy life that brings Jim complete healing.

It shan't be long before we're closing up our clutter-free home with a new washer, dryer and planer in order to go on a Hawaiian vacation to celebrate Jim's healing. We'll have to wait a while before Rachel decides to get married, thank heavens!

She's All That - And a Giant Pastrami Sandwich

Our trip to New York was great!

First off: (and the actual reason you're reading the blog) - Our visit with Dr. Kemeny was a success. Jim's scan went well on Monday. We met with her yesterday morning to review the results of the scan.

As you know, Jim has multiple tumors on his liver and some implanted on his omentum, which is the lining of the abdominal wall. He's also got a tumor further down in his colon. One of the tumors on his omentum is gone! The tumor in his colon has shrunk! There are several tumors on his liver - we think around 7. Some of those tumors shrunk! Three of the tumors on his liver, the three biggest, actually grew. The good news is that Dr. Kemeny agreed with Dr. Haid that the biggest tumor doesn't look...right. Meaning it could be dead!


They tested Jim's CEA level at Memorial Sloan Kettering, and once they get the results, they will work with Dr. Haid to decide what to do. If his CEA level rises, they are going to put him on a different chemo regimen. If his CEA is lower or the same, they are going to stay the course and see how he's doing in a month. Dr. Haid decided to give Jim another scan next month to verify improvement.

We were delighted to hear that Dr. Kemeny agreed with literally everything that Dr. Haid said. Obviously Dr. Haid is our guy and the leader of this team, but it would be foolish not to get a second opinion.

Jim goes back to NY in April for another scan. We got the impression that Dr. Kemeny wants more improvement - faster. Jim is very young and otherwise very healthy - he's the ideal scenario for kicking Stage IV cancer and I imagine he's an interesting case for any doctor because he is so young.

Okay, that's the end of the medical portion of the report. Here's the rest of it:
Our visit with Dr. Kemeny was a totally different experience than the last time. In October there were hundreds of people in the waiting room, we weren't seen until around 12:00, and our appointment was at around 9:30 or 10:00. We had to meet with a ridiculous number of people including Dr. Kemeny's fellow, nurse, assistant and several visiting doctors from Japan that spent the day following Dr. Kemeny around. Dr. Kemeny was extremely curt and it was hard to get her to answer questions. She didn't go over the scan results with us in detail, and although she agreed with Dr. Haid's recommendations, she didn't seem happy with the fact that we wanted Jim to have treatment in Wisconsin rather than fly to Manhattan for treatment every other week. I practically had to hang on her leg to get her to stay in the room and answer the few questions we had.
This time there were around 30 people in the waiting room. They started our appointment (which was at 9:30) at 10:00, after bloodwork. We met with her Nurse Practitioner, her nurse (the same one who chewed me out when I moved Jim's appointment so he could go to Mexico), and Dr. Kemeny herself. And that was it. Everyone was friendly and took time to talk to us. Dr. Kemeny SAT DOWN ON A CHAIR to review the scan results with us. She got on the phone with Dr. Haid and came back and said "he's nice - I agree with his recommended treatment". He's NICE? This was not the same brusque eccentric that we experienced in October. She even told Jim he had the right attitude for beating cancer.

What was the difference? I have no idea. We brought Jim's sister, Judi, into the appointment with us so that she could ask questions if Dr. Kemeny dropped some kind of bombshell on us. Judi's theory is that Dr. Kemeny didn't want to mess with a "big sister" - you know, "I can pick on my brother, but you most certainly cannot". Whatever it was, the appointment was much better than we expected or even hoped it would be.

The rest of the trip:
1. Our friends Paul and Sara flew up from Atlanta to meet us. It was awesome! We've really missed Paul and Sara, so seeing them was a real treat. Sara is the ultimate planner, so we were never lack for things to do - including seeing parades for Chinese New Year, visiting a Spanish Painter exhibit at the Guggenheim (I was pretty sure before, but now I'm CERTAIN that I hate Picasso), eating at the Carnegie Deli, drinks at the Waldorf-Astoria, and lots of shopping.
2. Quite possibly the best part of the trip was the downtime we got to spend with Sara and Paul. One night we sat in their hotel room, watched golf on tv, and ate the emergency snack stash that I'd brought for the airplane. We were just too tired to move so we just didn't. We sat around and talked and rested. It was great.
3. Sara and I rode the subway. This is an event on two levels: I'm a germaphobe and I made it out alive, and also we made it to our desired location without getting lost.
4. Jim's cousin Aileen generously lent us her apartment again. Staying at her apartment is pure luxury - from the cost standpoint, but also from an ego standpoint. It's just better to get into a cab and say "Central Park West" than to say "The Hilton in Times Square", which translates to "We're tourists, can you give us a ride around the city and charge us extra for it?"
5. The day that Paul and Sara left, Judi and Mark arrived. We had a marvelous time with Judi and Mark. We went to the Museum of Natural History, which was warm and loaded with around 10,000 grade school kids. We had a great time nonetheless.
6. Judi got reservations at Robert DeNiro's restaurant, The Tribeca Grill. Just to let you know how hip Judi is, they were screening a new movie there on Tuesday night and apparently we walked in right behind Molly Shannon. Jim tried to convince the hostess that we were there for the screening, but she didn't buy it. The dress code was "Smart Casual" and even though Judi and Mark were dressed smart casual, Jim and I were dressed "smart jeans", which probably doesn't qualify us for a movie screening. I'm pretty sure they would have let Judi and Mark in if Jim and I hadn't been a denim ball and chain. :)
7. After Jim's doctor's appointment, we went back to the Carnegie Deli to celebrate with Judi and Mark. Nothing says celebration like a bowl of Kreplach soup and a giant pastrami sandwich!

We had a great time in New York and good results with Dr. Kemeny. That, my friends, is why Dr. Kemeny earned the award "She's All That - And a Giant Pastrami Sandwich". I wonder if she'll put it on her resume?

Want to see more pictures of New York? Check out our Shutterfly album.

400 Cancer-Free Minutes

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

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

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

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

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

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

As you might have guessed...

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

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

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

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

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

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

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

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

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

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

The Headless Angel

When Jim and I were first married, we both took continuing ed classes - he took "Repairing small engines", during which he fixed an entire snowblower, and I took a stained glass class. I am the sort of person that goes gung-ho on everything for about 6 weeks. And then...that's it. After experimenting with a thoroughly enjoyable hobby, I insisted that I need an entire stained glass studio. Jim sort of snorted and told me to hold my horses. Our last project in Stained Glass class was creating an angel. I got all the way to the head, and I guess my internal timer went off (around 6 weeks of classes) and I stopped my angel. Years later, we found my headless angel and Jim laughed himself to tears.

So the running joke in our house is about headless angels. It's pretty common to say "this isn't going to be another headless angel, is it?" When Jim wanted to get scuba certified (which, by the way, is a very expensive hobby), the first thing I said was "please don't let this be your headless angel."

Boy was I wrong! What started off as a potential headless angel has exploded into a full-on obsession, complete with the purchase of two scuba suits (on my Dad's part - Mom's not too jazzed), compasses, knives, neon dive lights from my brother, and a bevy of other things. Jim spends most nights on the Web looking up potential dive sites, planning next week's Mexico dives, and perusing websites for shipwrecks in the Great Lakes. Not to mention the endless phone calls about diving - he spends a lot of time chatting it up on the phone. He's like a teenage girl.

Jim's friend Tom, also a diver, sends a care package for Jim every single treatment. Today's gift was a very generous dry bag for Jim's dives. You can probably figure out from the name what a dry bag is supposed to do. Jim was delighted. In the world of headless angels, Tom has officially put the halo over the angel's head. I get the sneaking suspicion that Jim's silent thought is "nanny-nanny-boo-boo". And he's on the phone again, calling Tom, to talk about...diving.

Even if this whole diving thing turns out to be a headless angel (which I don't think it is), it's giving Jim something to look forward to. He's making plans, having fun, and working toward some really interesting trips.

I don't think he's going to be as sick this round. Treatment went well today. He's not nauseated yet, which is a good sign. We're mall walking tomorrow. And he'll be sitting in the warm Mexican sun in eight days. It's good to have something to look forward to - whether it be a vacation, spending time with family, reading a good book, woodworking, or creating a new headless angel.