FINALLY

We finally got some "good" news today. Most of the cancer is concentrated immediately around Jim's liver. It's pretty sad when that's the "good" news, but hey, we'll take what we can get.

SO, Dr. Haid, our cancer boon and guru, went over the PET scan with us today. We are very excited that most of the concentration is around the liver, because as per Dr. Kemeny's plan, we will now proceed to treat Jim's liver directly. She gave us two choices - treating the liver directly with chemotherapy, or doing the radiation microspheres. Since the microspheres aren't available at Sloan Kettering, our next choice is someplace close to home. Although treating the liver directly with chemo (called hepatic arterial infusion) is the more prevalent of the two choices, we've done chemo (albeit systemic)...and without much luck. So we're choosing to try the radiation microspheres first. We haven't done them, and we're hoping that our lucky number comes up with these little suckers.

We'd thought of going to Madison, but I started wondering last night if we wouldn't have more success in the Chicago area. After all, it's a larger concentration of people (read: a larger concentration of cancer), let alone those that travel there for treatment. So I found out that they do the radiation microspheres at Northwestern and University of Illinois, Chicago. Yee haw.

After we confirmed all the liver information with Dr. Haid, I expressed my concerns about going to Madison for the microspheres. Dr. Haid told us that he wasn't too impressed with Madison. Suddenly the list is down to two. Then Dr. Haid says "Well, I was at Northwestern for 25 years, and Dr. Al Benson is a friend of mine. Let's call him now." So, Dr. Haid made the call. Well, Al Benson is out of the office until the 25th. So they tried to give Dr. Haid the fellow's information. Dr. Haid told them that working with a fellow is completely unacceptable, it would have to be his replacement. SO we got set up with Dr. Mulcahy in the meantime. We're seeing her this Friday. At 10:00 am. Heaven sent.

We still have to call Dr. Kemeny's office tomorrow. We still need to investigate the trial at St. Luke's down in Milwaukee. And we still need to consider if we want to do the trial through Dr. Kemeny, do the trial in Milwaukee, or do traditional chemo in addition to the radiation microspheres.

We are excited. It seems that a path is forming with new possibilities. We're making a good choice by asking Dr. Haid to coordinate Jim's care. We're doing the right thing by sticking with Dr. Kemeny. And now it seems that we're being pointed in the right direction by going to Northwestern.

We need your continued prayers. Thanks, also, to those of you who have let me know you've heard Lola. I believe we are getting signs that we should press on. He might not be cured this week. He might not be cured next week. But what if he could be cured soon? That's what we're hoping for. We are painfully aware of where we are in this process, but new treatments and new directions give us hope.

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.

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.

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.

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.

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.

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.

Change of chemo, so he's not in the trial

Something I believe I forgot to mention in my previous posts is that now that we've opted to go with a new chemo regimen, Jim isn't in the clinical trial any longer. Truthfully, it was a little hard to leave the trial. While in the trial, it sort of felt like he was helping. With what I'm not sure. But it definitely felt like Jim was contributing to the greater good.

By far, the toughest part about being out of the trial is the fact that we don't get our weekly dose of Deb Grey like we used to. Deb is one of the clinical trial coordinators, and she's the BEST. Every time Jim had chemo, she'd take a chunk of time and talk to us - in part because she had to ask Jim health-related questions for the trial, but also because she's just an all-around caring person. Sometimes I hugged her so hard that she might have felt that I was closer to a static-cling pantleg.

Getting to know Deb was most definitely one of the best benefits of participating in the trial. She's shared our joys, and our pain over scans that weren't as great as we'd hoped. She's called us at home and checked in on Jim, and me, too. She gave us the motivation to keep going through times when we questioned whether or not it was worth it.


Now that Jim is out of the trial, we're still getting calls and caring from Deb. I don't know how some of these people do it - she's held Jake for me during tearful doctor visits, she's played with Rachel and set up coloring trays for her, she's shared stories of vacations and stories of her kids with us. The people at the Vince get so personally vested in some of their relationships. It must be hard. It's got to be frustrating to see the emotional and physical rollercoaster of cancer. But at the same time, I imagine it's going to be a thrill for her, and for some of the others, when they get to hear the savory words "No Evidence of Disease". I'm not sure how we'll ever thank these people that give us light, encouragement, motivation, and comfort. Deb Grey is someone we'll cherish in our hearts forever.

Tough Day - Emotionally and Physically

Jim had a tough day today. Our church is starting a series on Parenthood, which sounds positive and exciting (and it is), but when you have cancer, it brings up questions like "will I even be here to parent my kids?". Today was the first time I've seen Jim so upset since his diagnosis. It must be hard for him to look at our kids and wonder whether he's going to be able to watch Rachel learn to swim, or whether he's going to get to see Jake play t-ball. Or anything beyond that.

Logically, we know that Jim is way outside the statistics. They really don't even apply to him. After all, the average age for colon cancer diagnosis is 72. Other people whose prognosis were worse than Jim's have bounced back from Stage 4 cancer.

In every day life, we get so caught up in making plans, making treatment choices, going to chemo, going through surgery, getting blood tests, taking medications, visiting the pharmacy, making organic meals, going to tai chi, updating the blog - these are all really just activities that keep us busy and make us feel like we have a sense of control. We tend to get so busy in the process of things that we forget that what we're going through is a ridiculously stressful situation.

Sure, getting chemo is a step in the right direction. It's the right thing to do. But mentally, it's tough to go and receive chemo when he didn't ask for cancer in the first place. I can see where people would get really bitter in a scenario like this. We didn't ask for this. We were just going through life, minding our own business, when the cancer reared it's ugly head. Now we're left with a "challenge" that we basically have to win. The stakes are just so high that I imagine the pressure could really blow some people out of the water.

I guess our flurry of activity is a coping method. After all, if we just sat around every day to dwell on how high the stakes are, we'd both get depressed and have a hard time putting up a fight. At least this way, we feel like we're doing something. We're contributing to his eventual victory.

Jim had a tough day physically, although early in the morning he mentioned to me that he felt it was the first time he was able to get a full breath of air. His core temperature is fluctuating all over the place. He's freezing cold or sweating profusely. It's almost like he's in detox. This is all normal, according to the doctors. And he's stopped taking the vicodin they gave him for pain relief. He's still got a lot of pain in his back, but he's not really crazy about the vicodin. I think part of the issue physically is that he's dealing with so much emotionally. At least I think that's what's going on today.

Did you know that almost 1/4 of cancer patients start getting sick before they get their chemotherapy? The anticipation of what's coming makes them sick. Although I think he's been improving physically, he knows what's coming tomorrow. Tomorrow. The darn chemo again. Sometimes I feel like begging for a break for him, but at the same time...if he takes a break it could set him back, and that's the last thing we want.

When I'm calm and I can maintain my sense of perspective on the situation, I try and tell him that even though this is horrid, when he's done he can go back to being himself. That's something that is really eating at him today. He hasn't been "normal" Jim since September 13, 2006. 7 months of not being yourself. 7 months where your thoughts alternate between "I have cancer" and "Am I going to beat it?". 7 months of "treatments". In the overall scheme of things, this may be a bump in Jim's road of life. Granted, mentally it will always be a pretty BIG bump, but if he beats the cancer, he can go back to being Normal Jim.

Thus far meditation and prayer have helped me remain calm and maintain my sense of perspective on the situation 99% of the time. The 1% typically happens when I'm not at home - when I'm alone, driving somewhere in my car. I know in my heart that Jim can beat it. I know that Jim knows he can beat it. Heaven knows that I've offered him lots of superficial incentives to beat it, including a trip to Hawaii, a pot rack (future blog entry), a lifetime of foot massages (another future blog entry), and a new planer (woodworking tool). All that on top of the obvious incentive for beating the cancer - life.

I guess even the most collected people are entitled to a moment of panic and doubt when the "C" word comes into their lives. I hate cancer. I hate it. I hate it that my Jim isn't Normal Jim. I hate it that he has to deal with stress like this at such a young age. I hate it that he has to worry about things that he shouldn't have to worry about. Blissful ignorance and a sense of immortality should be something he can have, just like the rest of us.

I'm giving him some time. I know he can beat it. When he does, I'm planning to shake my fist at the cancer and scream "GET AWAY FROM US! YOU ARE NOT WELCOME HERE!" I then plan to do a happy dance in Dr. Haid's office when we hear the words we long to hear most in life: "No evidence of disease."

It's sad how cancer changes your perspective - shouldn't the words we long to hear most in life be "I love you"?

Launching My Medical Career

Since Jim's diagnosis, I've been considering changing my career path to something in the medical field. I'm not sure what I want to do. Originally I thought I'd go into massage therapy, and offer free massages to the patients at The Vince. But when I mention massage therapy to my friends and loved ones, I always receive a haughty laugh and the "um, no." When I question it, their response is "Kate, you don't like people. And you certainly wouldn't want to touch strangers." Oh. They got me on that one.

I've also considered medical transcription, which isn't exactly helping anyone, per se, except the doctors. But at least I'd be doing something. The only thing is that I'm a hunt-and-peck typer. I'm a fairly fast hunt-and-peck typer, but I still don't have the proper form nonetheless.

Nursing: I thought I could do it right up through Wednesday, April 4th at 12:03 pm, when one of the new nursing assistants came in to give Jim a Foley Catheter. Watching that being inserted was enough to scare me out of nursing. The poor guy was so nervous - it was his first time doing a catheter. Poor Jim was nervous because it was the guy's first time doing the catheter. There's not a ton of dignity as a patient, I've got to say. I don't think I can inflict pain on people like that. Obviously nursing is a very compassionate field - it takes a special kind of person. Maybe that person isn't me. Plus I despise needles. I gave birth to two kids with no drugs in order to avoid the whole needle thing (and, by the way, I'd do it again without drugs if given the choice). Why would I want to step into a career where I have to stick people with needles?

Physical therapy? No, too much touching.

Nutrition? Hm. Maybe, but it's not something I'm passionate about even though I'm more educated.

Research? Too much math.

Nursing assistant? Nah. I might as well be a nurse.

My last resort is training to be a medical writer, wherein I would translate medical information into brochures, marketing materials, and educational materials that people outside the medical field can understand. It's a possibility, but I question the job prospects. Especially in SHEBOYGAN. As great as the medical care is, I'm not convinced they're going to need scores of medical writers.

So far the two careers I keep revisiting are nursing and massage therapy. I guess I'll start my research. I guess the real point is that I want to help people, and after seeing what cancer patients have to go through, they could really use people who care about them and their plight. The nurses that have helped us - at the hospital and at the Vince - these are the kind of people I want to be when I grow up. Caring, compassionate, good people. People who are so awesome that I swear the healing begins when they come into the room. People that make our day. People that make Jim's surgery pain subside the minute we see them. Those are true heroes. They are helping Jim kick the cancer every day. The very sight of them is calming and positive.

Jim's recovering - slowly. He has pain in his chest and back when he inhales. So, every time he breathes in, it hurts. He's short of breath, so physical exertion - even walking the stairs, is hard for him. He's taking some pain medication and that seems to help a little bit. Dr. Haid said that all these things are normal. We just have to wait them out. All of his blood levels are fine, which is exciting. And so far he's not shown any risk of infection, which is thrilling.

Jim starts chemo again on Monday. His new chemo combination causes a rash that makes him look like a teenager on a double-dose of hormones. He's covered in pimples. His hair was hurting last week, and we thought it might fall out. The real reason that his hair was hurting is because his scalp basically blistered as a result of the chemo. It's clearing up now. And Dr. Haid gave Jim some gel that he can put on his skin to help control the rash. We can't let the rash get out of control because I've read there's a possibility it can do some longer-lasting damage to his skin. The good news: the nurses got all excited when they saw the rash. They said that's typically a sign that the chemo is working. Hooray!

One step at a time. We will move the cancer out one step at a time. Cancer is not welcome in our lives. After Jim is completely healed, I hope that we can use our knowledge to help other people win their fights. I hope we can provide a tenth of the inspiration, commitment, and caring that people are currently giving us.

Into the Bogle

Thanks to Tom, Judy, and Aimee.

These are the people who heard my cry for red wine, and, well, delivered red wine. So tonight, as Jim and his Mom are peacefully reading and spending their time relaxing and mentally preparing for the day ahead, I'm...drinking the wine. Yum. Tom (a dentist, and a clever one at that) actually sent me a red wine prescription, with as many refills as I need. A prescription for Bogle Red Zinfandel. I promise to keep up my flossing, Tom. I love the prescription.

Judy and Aimee were just as clever (although, truthfully, I drank Judy's wine within hours of delivery and coerced her and my friend Susan into drinking it with me under the "Grey's Anatomy" guise), Aimee's arrived today with CHEESE. These people are speaking my language.

I was really joking about actually sending wine, but the gifts are a delightful treat, and you can all rest assured that they shan't go to waste.

In the meantime, Jim seems calm. Today we got the first physical evidence of chemo since he started treatments in October. Vectibix can cause a rash, like pimples. So far they've arrived on his forehead, nose, chest and shoulders. After a lone treatment. Also, the Irinitoncan can cause hair loss. They said about a 30% chance. Jim's hair on the top of his head is hurting, like knives stabbing into his head. His best guess is that the chemo is monkeying with his hair follicles, but because he has so much hair, and because it's rather tough, he believes his hair is putting up a fight and will most likely decide not to fall out.

Please keep us in your prayers for tomorrow. We have a lot to look forward to. We have faith in this doctor. We have faith that we are taking steps in the right direction and that Jim will be healed and restored to complete health. We are looking forward to seeing our beloved 2K nurses. And we're thankful for everything that we have. A beautiful family, a great support network, friends that define the word friendship, a strong faith in God, and that my Jim will be healed. Every day is another step toward complete healing.

Get your wine glasses ready. I fully expect to write a great report tomorrow night. It's Bogle Time!

He's watching COPS again

Normally I'm against COPS. The tv show. Jim loves it. COPS is to Jim what red wine is to me. It's a total tune-out without a morning hangover. I personally dislike COPS. The people on the show get themselves into all sorts of trouble that could easily be avoided. In the last few years, I've noticed that COPS really grates on my nerves because there's always some poor child crying in the background while his mother is getting hauled off to jail. It's the child factor that bothers me.

Jim is very tolerant of my red wine habit. I'm minimally tolerant of COPS. I'm extra tolerant when the situation calls for mental TLC - he's not feeling great, the only thing he can seem to stomach right now is cereal, and the dogs are stinking up our family room. (That was for you, Artemis!) He gets to watch COPS continuously when he's feeling like this.

Things are going fairly well, all things considered. He's rating his nausea at a 5 on a 1-10 scale. He said that it's a constant nausea, whereas with his previous regimen, it was huge dips and spikes. He's also very tired. But he got the pump out today, so things should start looking up from here.

He's got to go back in for the shot to boost his white blood cell count tomorrow. They said that it can be very painful. Not the actual shot, but apparently many of our white blood cells are created in our chest and back. Apparently those two areas can get to hurting pretty badly. So we'll see how it goes. He's expecting the pain, and I'm hopeful that this will be like the pulmonary embolism. Where most people feel as though they are having a heart attack with a pulmonary embolism, Jim didn't actually feel anything except a slight tightness in his lower lung. They found Jim's pulmonary embolism on a scan - we didn't know he had it. Any way, I'm hoping he'll either be so focused on the fact that he's nauseated that he won't notice the after-effects of the shot, or he'll be able to transcend the pain as he did with the embolism.

In the meantime, he's welcome to watch COPS if he needs a little mental vacation.

Out of Commission

I haven't written over the last week because our family has been a bit out of commission.

Jake was struck with the norovirus the week before last. Norovirus is basically a stomach flu - highly contagious among kids. I blame the YMCA babysitting, but of course I have no proof. Well, once Jake was sick (and boy was he ever - 104.6 temp!) Jim was convinced that he was sick too. Of course. So over the last week I've taken care of two babies, plus Rachel. Jim miraculously recovered on Friday, although we still took it very easy over the weekend and we went up to my parents' cabin. [Help with the kids. Pure bliss.] Jake didn't fare as well as Jim, and he really just got over it yesterday. Norovirus starts with throwup and ends with diarrhea. Yuck. Probably my #1 least-favorite activity as a parent is cleaning up anything that came out of someone else.

Jim couldn't receive chemo last week because he wasn't feeling well. If he did have norovirus it could have been disastrous with a new chemo regimen. They aren't really jazzed about administering chemo to sick people.

Well, Rachel woke up whiny this morning. Lo and behold, she's at 103.9. Ack. And, as luck would have it, Jim is "sick", too. I told him he'd better buck up and go in to receive chemo tomorrow because I'm not taking care of three babies. This is where I put my foot down.


You know, as a girl, I imagined a vastly different life than I am actually now living. While other little girls dreamed of their wedding day, I dreamed of a sales career and owning my own loft in New York City. Much akin to Sex and the City, except that at the time I didn't know about sex, so my dream involved having my own cat and being able to do whatever I wanted to do, whenever I wanted to do it. And wearing really cool clothes all the while.

I doubt quite seriously that my green Lands' End down vest and Gap jeans would fall into the "really cool clothes" category. And Sheboygan, Wisconsin is hardly a synonym for New York City. And I don't even have a cat - I have two smelly, giant dogs. And I was never much good at sales.

Although I've largely failed at my childhood dreams, I realize that my current life blessings far outweigh the things I thought I wanted as a child. One never really envisions long, sleepless nights with inconsolable sick kids, getting thrown up on, and having so many poopy pants in the laundry chute that I finally run out and am forced to let my son sit in a diaper while I do an emergency load of laundry. Would I trade it for a day in the life of "Sex and the City"? Not on your life. I can't think of a better life than the one I'm living now.

Although I could use a new Marc Jacobs bag, some arch-killing Blahniks, and a crisp pair of Seven jeans.

No surgery next week

The doctors have postponed Jim's surgery until April 4. They did that because one of Jim's current chemo drugs, Avastin, doesn't do well with the healing process. As with starting chemo after his colon resection, when Avastin is involved it's important to make sure that either the surgery incisions are completely healed, or that before surgery, there's no Avastin in his system to inhibit healing.

Jim begins his new chemo regimen on Monday. Dr. Haid did not want him to go without chemo before the surgery since it's been postponed.

There's a chance that with Jim's new chemo regimen he can lose his hair. Of course, it's only a 30% chance, and Jim has a hell of a lot of hair. So maybe he'll just lose enough hair to be...Irish. Bwah ha ha ha ha. He's not concerned about losing his hair, but if he does start to lose it, he's going to have Rachel help give him a haircut so that he won't look "strange" to her.

Good things are happening. This new chemo regimen has the potential to completely shrink his smaller tumors until they are gone.

Winter Brings "Freezing"

Good news today! Yesterday's scan gave us some interesting results.
1. The largest tumor on Jim's liver (about the size of a baseball) is liquefying! The tumor is actually bigger. It grew about another centimeter; however, the density is different. Dr. Haid has predicted since December that the big tumor was doing itself in...he was right!
2. A couple of the other smaller tumors on his liver as well as one on his abdominal wall have grown.
3. The other tumors are stable.

Bear in mind that we just had a scan last month, so we shouldn't be disappointed with the fact that there's no shrinkage. (Or, as our friend George coined "goneage".)

What we need to focus on right now is the big tumor and the fact that it's basically destroying itself. Dr. Haid is recommending cryoablation, which is the process of using a long needle to inject the tumor with freezing cold gas, thereby freezing the tumor. The "ice ball" that is created around the needle grows in size and destroys the frozen tumor cells. Dr. Haid spent a good portion of the morning looking over Jim's CT Scan with an Interventional Radiologist. Dr. Haid highly recommends this radiologist, who he said has great experience and is very aggressive. Aggressive is what we want to hear!

We have a meeting with the Interventional Radiologist on Friday. Then Jim goes to the hospital on Wednesday for his procedure. He's be under general anesthesia, and he'll have to stay in the hospital over night. (Lucky for Jim, he'll be on the second floor with his beloved 2k nurses!) Dr. Haid said that the recovery time is a few days.

After that, Jim will be starting a different, aggressive chemo regimen. He will be using FOLFIRI and Vectibix. We are very excited about this for a few reasons. The oxaliplatin was really beginning to take a toll on Jim's feet - the neuropathy was causing numbness in his feet. As a result, they were reducing the amount of administered oxaliplatin. It's a careful balance to treat aggressively and still avoid neuropathy that might cause permanent nerve damage.

Because he'll be on a new chemo regimen, they can once again begin very aggressive chemotherapy. We can focus on melting the smaller tumors away, and not be concerned with what the big tumor is doing because it'll be gone!

We are very heartened by this news. Obviously the big tumor was troubling to us, mentally and physically. This is a giant step in the right direction. We are using every ounce of our beings for healing, for prayer, and for adopting a better lifestyle.

The cancer will melt away, and we will be in Hawaii in no time. I can feel the black sand beaches between my toes.

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!

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.

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.