The Windy City

Hello friends and family!

We had a good visit to Northwestern. We went late Sunday afternoon because Jim's CT Scan was at 7:00 am on Monday morning. Although he was terrified, his scan went well . All these scans and tests don't seem like a big deal individually, but when you have to have a scan every week or every other week, it's easy to dread them. And the good news about this scan was that he didn't have to drink the contrast dye. Jim is having trouble getting anything into his colon at this point. If they'd made him drink the contrast, he probably would have gotten sick. But they did an IV contrast instead. It seems impossible that an IV would be more pleasant, but it's all perspective.

Yesterday was Jim's big day - his angiogram and dry run with the microspheres. He also had to have more than 2 hours of scans. He was under conscious sedation for everything, which means that he's awake, but he doesn't feel any pain and he typically doesn't remember anything. The angiogram went well. So well, in fact, that they had him scheduled for the actual procedure before we even made it out of Chicago.

They also drained out 5 litres of ascites (fluid) from Jim's abdomen. Monday night Jim had so much ascites that he was actually having trouble breathing because it was starting to push his lungs up. Jim actually remembers watching them drain out the ascites from his abdomen. While he was under conscious sedation. Draining that much fluid will help Jim feel better. By the time we got there he looked like he was around 5 or 6 months pregnant. But the rest of him is so thin that his belly was really obvious. He looks a lot better now - he's not nearly as distended. And I'm hoping that relief will lead him to drinking his shakes during the day so he can build his strength up.

The only disappointing news is that the Interventional Radiologist (IR), Dr. Lewandowski, found a blockage in Jim's kidney. When we heard "blockage" the first thing we thought was "cancer". But Dr. Lewandowski doesn't know what it is that's creating the blockage, so we shouldn't get ahead of ourselves. If it is cancer related, it's brand new, because Jim had that PET scan on July 12th and no less than 4 doctors have reviewed his PET scan without finding it. So I'm hoping they're going to come back and say "kidney stone" - which was my brother-in-law's idea. And a good one. Luckily Jim had his personal care team of three newly indoctrinated doctors - me, his sister, and her husband. They have to get rid of/fix the blockage in his kidney because it can cause an infection, and heaven knows we don't want that happening. I spoke with Dr. Haid today and he basically told me that we need to fix it sooner than later. Read: get it done this week or early next week. Aw, come on. To fix a blockage they can put in a stent, similar to the stents they put in one's heart arteries. The process for putting in a kidney stent is not a pretty one. You can research that on your own if you're really curious. But Dr. Haid did give us his advice on choosing one of the two methods, and we're going to follow it.

Here's the difference between a big hospital and our very own world-class medical care in Sheboygan. When Jim comes out of any sort of sedation, apparently he's a bit of a handful. Meaning he basically wakes up fighting with fists swinging. The IR nurses here in Sheboygan teased him and said he was "cute" and "feisty". The IR nurses at Northwestern just drugged him until he passed out. I guess at a big hospital they have so many patients that they can't cater to anyone, but all the drugs they gave him made him really, really nauseated. He was sick all evening and the bulk of today. We didn't get home until much later than we expected because he just didn't feel well enough to leave Chicago. I'll say it again: there's something to be said for small town care. We also had our first not-so-caring nurse. And no matter where we go, so far the nurses have been awesome. So it was a bit of a disappointment, especially because we've come to rely so heavily on the nurses for moral support, for comfort, and to insert an IV with a bit of a gentle hand.

So his actual microspheres procedure is on Thursday, August 9th. The longest day was actually yesterday, so he's over the hump in terms of tests and scans. We are looking forward to the 9th. I am hopeful that this will bring him some pain relief, and that he'll be able to go back to solid foods after this procedure. FYI, it's not uncommon to have to do shakes or some such diet and then later return to a normal diet.

Chicago was fabulous. Northwestern Hospital is literally one block off the Miracle Mile, so we even got to do a little shopping while Jim was in his angiogram. (It was six hours long...don't look at me like that.) I had fun getting a couple of school outfits for Rachel. I love Chicago. It's a very pretty city. The hardest thing about being there is that I typically do everything with Jim. It's really hard to have fun without him. He's the first one I tell...anything. He's my best friend and I am always disappointed when I can't share something really exciting with him. Being in Chicago is a treat because it's Chicago, but it was tough because I just don't have the same kind of fun without my sweetie by my side. I keep saying it. Next year. Next year we'll hit the Windy City running.

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.

The emotional rollercoaster clicks uphill...slowly

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

At least Jim's got a sense of humor.

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

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

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

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

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

When am I going to hear "Lola"?

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

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

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

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

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

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

Things are so-so

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

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

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

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

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

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

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

Scan Today

Jim has a scan today. Please keep us in your prayers. His scan isn't until around 1:00 today, so we're just sort of hanging around. It's easier to have things scheduled for first thing in the morning to just get it overwith. This waiting around for a late appointment is for the birds!

March is Colon Cancer Awareness Month! If you are reading this blog and you're 50 years old, or older, please go get your colonscopy. No one wants to get a colonoscopy, but if you think a colonoscopy is no fun, try dealing with colon cancer. Jim says that at this point he'd rather get a weekly colonoscopy than deal with cancer. Not that he had a choice. Being diagnosed at 37 years old left him 13 years until his recommended check. I personally think the first colonoscopy should be set at 40.

If you're not treating your body right, ask yourself why. When I look back on our history, we've had healthy times and unhealthy times. Youth and perceived invincibility "entitled" us to a careless lifestyle for several years. Obviously it's no way to live. Who knows why cancer strikes some and not others...stress, genetics, unhealthy lifestyle...you name it. But even if you haven't been diagnosed with cancer, why would you want to treat your body with anything but the best? We may never know why Jim got cancer, but at this point - does it matter? What matters is adopting a lifestyle that doesn't promote cancer. Do yourself a favor. Stop smoking. Today. Exercise. Today. Eat better. Today. And schedule your colonoscopy. Today!

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...

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