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.

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"?

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.