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.

Good News?!

Well we got an update from Dr. Haid and the nurses at the Vince today. We got word that the tumors have not increased, and that they are in fact, stable. Radiology is not an exact science. In fact, I would say that almost nothing with cancer is an exact science. Even the control group patients have widely varying backgrounds, causes, lifestyles, and responses to medicine. Anyway, radiology isn't exact - 10 different radiologists can look at the same chart and come up with 10 different readings. It's a good thing that Jim's in the clinical trial. A different radiologist read his scan this time. But because Jim's in the trial, they asked the original radiologist to review the scans once again. This radiologist said that there's no change in tumor size, which is obviously excellent news.

They were very excited to give us this news today. Even though his CEA level has increased, there's a chance that his CEA level is higher because his tumors are breaking up - or ready to "implode". It's fairly common (especially in breast cancer) that a CEA will rise and then later there's a tumor response because the CEA is circulating in the blood stream as the tumors are disintegrating.

Also, Dr. Haid did something pretty neat with Jim on Thursday evening. Dr. Haid is trained in both Western and Eastern medicine. So when Jim met with him on Thursday, he helped Jim's chi circulate better by looking at his chakras (Chakra means 'wheel' in Sanskrit. It is imperceptible, and comprised of any of a number of spiritual energy centers in the human body. In China, chakra is said to be the paths or centers of energy. There are seven major chakras in the body, and these are all associated with endocrine glands.) and determining whether or not they were flowing correctly. Turns out that one of his chakras was off. Dr. Haid had Jim do some visualization and a few other exercises, and Jim's nausea stopped immediately. Obviously this is an activity that you have to be open to and willing to accept, or at least try. Jim very much enjoys the benefits of tai chi, so he's open to trying anything that Dr. Haid recommends. This was a very powerful and healing meeting for Jim. Dr. Haid brings so much more to the table than just medical training. It's hard to explain the calming effect this guy has on people. Once Jim kicks the cancer I know that we will be sad (and happy!) to stop seeing Dr. Haid. He's a very special individual.


I am hesitant to get really riled about this news. I am delighted to hear it and I personally believe that this more accurately reflects what's going on inside Jim's body, but I will also be happy to hear what they have to say in New York. I dare say I'm actually excited to see Dr. Kemeny. Warm and fuzzy she's not - but the woman's got talent. And all I need to hear from her is that Jim's beating the cancer.


New York City, here we come! I can't wait to get another fake Prada bag. Oops, I mean, I can't wait to get myself another Prada bag.

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! ;)

CEA Level Up Again

Hi everyone-

I thought I'd let you know that we got some bad news today. Jim's CEA level is now up to 86.4, from 65. Needless to say, we are very disappointed with this news. We're just taking things as they come right now. We are going to New York and we're sort of holding on for that visit. There's not much we can do at this point. We're a little down, but we know that setbacks happen and that we still have time to turn things around. Jim is so healthy - we just need to find the right combination to get and keep him cancer free.

I am very hopeful that the doctor in New York will have a treatment idea to get rid of some of the tumors. The annoying thing is that if we could just get rid of the pesky little ones, it would open up myriad treatment options for the ones on the liver. Until then, we have to use systemic chemo to try and get rid of the tumors on his abdominal wall.

Wasn't the blog more fun when I was able to write about our daily lives and use my imagination? I like the blog to convey news, but at the same time I wish I had better things to report.

Jim's doing pretty well - he's not sick this week, but he's very, very tired.

Best to everyone. Please keep us in your prayers.

love, K

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...

No Results Yet

Hi Everyone-

I wanted to let you know that we haven't heard any results from the scan yet. It typically takes a couple of days - so maybe tomorrow we'll hear something. Unfortunately, Dr. Haid is on vacation this week, so any results we do hear will be "unofficial". I guess that's okay since Jim is on vacation anyway.

The scan went well. Pretty uneventful. The scan itself doesn't hurt at all. They make him drink around 24 oz. of contrast fluid over the course of an hour, and then the scan takes about 20 minutes. Lucky for us, Jim's friend Ken works in the Physical Therapy department at the hospital, so while Jim drank the contrast fluid he went down and visited Ken.

Ken is one of those people who makes you feel instantly relaxed. Something in his mannerisms and demeanor is very calming. When Jim was diagnosed and hospitalized for his surgery, Ken visited us every day. It almost seemed that when Ken walked in the room everyone let out a sigh of relief. Obviously it takes a special kind of person to work in the medical field. So it was really nice for Jim to be able to visit with Ken before the scan - sort of a calm before the storm. :)

Before he left, Jim stepped up our healthy eating battle - we now have a reverse osmosis water filter installed in our kitchen sink so that Jim (and all of us) can have the cleanest drinking water possible. Jim's cousin, Lynn, the wholistic nutritionist, recommended that we use the highest quality ingredients for everything we can. After all, healthy eating doesn't come from a can of Pringles. So when she suggested the reverse osmosis water filter, we thought it was a good idea. I am suspicious of Kohler water as it is - the filter makes me feel better. I doubt that Kohler is dumping stuff into our water supply, but then again, one never knows.

I'll post something as soon as I hear. I am nervous but I am also confident. We have completely altered our lifestyle - I am hoping that the results show on this scan. If not, we're ready to move to a different chemo regimen or try something else. He will beat it. We will beat it. We will win. I just read an interesting quote - "Anyone who says winning isn't everything never had cancer!" No kidding! I think we have the best possible medical team behind us, as well as a support system that could bounce the cancer if given the chance. We'll beat it - it's just a matter of time.

Please Keep Us in Your Prayers

Hello friends-

Please keep Jim in your prayers. His scan is tomorrow morning. We are dealing with some very high anxiety around here. We've had a nice weekend, and Pastor Kirby and Jim's friend Ken are coming to our house today to do a prayer for us. But somehow, no matter how fun or great things seem to be...our thoughts creep back to the scan.

Jim's not feeling well today. He's bound up inside and it's making him sick. Jim is not accustomed to anxiety like this. We need positive results.

Please keep us in your prayers.

Love from Kate, Jim, Rachel and Jake

In and Out

Jim's doing fairly well through this cycle. We've made a few changes, and I think they are helping.

• He started taking the Compazine (anti-nausea that makes his chest feel funny) again
• He's more active this time (although he did beg out of mall walking the other day...I wonder why?)
• He's drinking lots of Gatorade, which seems to be the only liquid he's capable of drinking right now. He's choking down water with lemon, but it's a difficult task
• He's looking forward to going to Mexico next week

I personally think the biggest healing factor in that list is the trip to Mexico. But, he's also doing his Tai Chi. His Aunt Cheryl gave him a Tai Chi DVD for Christmas, and he likes that. So he can karate chop in slow motion even when Dr. Haid isn't around.

He's still sick, but this isn't like the last two rounds. He's got waves of nausea this time, and nothing seems to taste good. He rated the waves of nausea at up to a level 4, but not all the time. And he hasn't gotten physically sick. I think that getting physically sick is the worst for Jim. In the past 11 years, I've seen him throw up ONCE. (And that was from yucky store-bought cookie dough that he ate raw.) Until cancer. Since the cancer he's thrown up more times than we both care to count.

His description of the nausea was interesting: "You know how it feels when you burn your tongue? Well, imagine that the entire surface area of your tongue is burned, and then try eating. It doesn't taste right." It's not the same kind of nausea that we're used to when we have a stomach virus - it's different.

Oops. Jake is crying. He's up from his minuscule nap. Sometimes I think "nap time" is a cruel joke that Jake likes to play. He makes me think he's going to sleep like a normal baby, but he fools me every time. Fool me once, shame on you. Fool me every day, shame on me. Is it foolishness, or blind hope that he'll sleep more than 35 minutes? A girl can dream.