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?

I hate it when people are nice to me

We had a good cryoablation follow-up visit with Dr. Siddique today. He checked out Jim's side (the insertion points for the needles), went over the scan with us, and told us that he'd like Jim to come back in for more ablation in a month or so.

Dr. Siddique was a little concerned with Jim's night sweats. Things haven't gotten better with Jim's core temperature. He's not running fevers, which is good, but at the same time, you can imagine how frustrating it must be for him when he has to get up four times a night and change his clothes because he's drenched in sweat. It's hard for him in two ways - it's annoying to wake up like that, he's resorted to sleeping on towels so that he can change them when he wakes up; and it's frustrating because he's not getting a full night's sleep. So he's exhausted on top of chemo nausea. Any way, Dr. Siddique had them schedule a CT scan for Jim next week so that they can make sure there's "nothing exciting going on in there", as Dr. Siddique put it. Of course once he said that, Jim was immediately convinced that there's a massive infection festering away on his liver. Great.

Jim's doing okay, but he's pretty sick. He had to ride to the hospital with a bucket today, just in case. That made him crabby. Then the visit with Dr. Siddique, while successful, put Jim into a bit of a panic with the whole infection thing. (By the way, Dr. Haid's theory is that since there's so much dead tissue in there, his body is treating the tumor as a foreign object *but it's not infected*, so he's basically sweating it out. Dr. Haid hasn't missed the mark once in the last seven months, so I don't think he's wrong now.)

After the visit with Dr. Siddique, we went to the Vince so that Jim could have the pump taken off. He was even crabby with Brenda and Joan, who are basically the people that keep Jim going to the Vince. Pump out: done. Then, we had an exciting development - we've been asked to be on the Patient Advisory Committee. Yippee! We are really excited about that. This is a great opportunity for us to help other newly diagnosed people and their families. So today we met with the coordinators of the committee.

Here's where we get into the title of my post - "I hate it when people are nice to me". While we were sitting with Ken and Darlene (the coordinators), she looked at me and said "So how are you doing?" I said "Oh, we're doing okay, Jim's not feeling so well today." Then she said, "No, I mean, how are you doing?" Oh, she means me...Kate. Not Jim, me, the kids and the ball and chain we call cancer. Usually when people ask how we're doing, they mean Jim specifically, or all of us. I typically gloss it over by saying something like "We're managing" or "We're doing okay" or "Jim's going through {fill in the blank} but he's handling it well and recovering nicely". It's not that I don't appreciate people asking after us, but typically people aren't looking for me to launch into some diatribe about Jim's health. So my standard answers usually work pretty well.

But not for people that know what it's all about. When someone asks about me, and they really want to know, I find that I wrinkle my nose to keep from crying, and I say "I'm okay". Why do they have to be so nice? It's so much easier to keep up my I'm-in-control-and-I can-handle-it-all facade. Keeping rigid is what keeps me going some days. Sometimes I fear that I'll become a gelatinous, crying blob and I won't be able to recover enough to support Jim. And then who would make him meals that he won't eat?

I also got the happiest flowers from our friend Stephanie. Sometimes it's little things that make or break a day. (That's not a request for flowers, by the way, this is just running commentary.) But the flowers were addressed to me. Not to Jim, me, and the kids. Sometimes getting something of my own relieves a lot of burnout. I'm aware that the cancer journey is about Jim, but it doesn't mean that I don't hurt for him. While he goes through the pain and sickness of surgeries and chemo, I go through the pain and sickness of watching the person I love go through surgeries and chemo. I know that this recovery and return to whole health is all about Jim. And that's why it's so easy to lump how I feel into how we feel. I feel guilt that I am struggling with this, too. After all, it is Jim that goes through the surgeries and the chemo - not me. And I feel terrible that he's going through it.


So my aforementioned 1% of my time where I'm not completely cool and collected and rational is often spent opening my mouth and inserting my foot. How can my verbal words be so graceless when my written words seem to convey how I really feel? Why is it so hard for us to admit to, or express vulnerability to the people we care about, or the people that care about us? No one wants to look foolish, but when I'm blogging about the fact that my husband has the least designer kind of cancer, aren't we past that?

Maybe it's that when I cry, I'm not a pretty crier. Mascara runs all over my face and I end up looking like a wreckage zone, and I can only allow that to happen near the comfort of my own home. Maybe it's that I don't want Jim to know I'm weak. I don't want him to think I'm not going to be able to recover and own up to the marriage vows I made him - in sickness and in health. Maybe it's that I don't want my kids to see me cry. Or the other people in Kohler. Whatever my reasons, I sometimes wish that people weren't so nice to me. It's much easier to attend to the business portion of the cancer ordeal rather than the emotional portion.

Fair warning: if you see me and say something nice, and I respond in the idiotic, it's not that I don't appreciate what you said. I most certainly do. It's that my words don't work as fast as my foot, and I oftentimes find that my foot makes it into my mouth faster than the appreciative words can make their way out.

Successful Day

Hello friends and family-

We had a good day today. The Interventional Radiologist, Dr. Siddique, was able to get 80-85% of the largest tumor. He wasn't able to take the entire thing because the tumor is so big. That being said, he considers the surgery a success and fully expects that Jim will be scheduled for more cryoablation next month in order to get the rest of that tumor, as well as anything else that he can see on Jim's liver. We are very excited.

Jim went into surgery around 1:00 today. Apparently Jim doesn't do ultra well in the recovery room, because he was there for quite a while and they gave him some morphine. I don't think they were expecting to give him morphine. But once he was back in the room he really pepped up, and although they gave him a patient administered morphine drip, he didn't use it. He suffered through starvation the entire day, so he was really excited about eating some hospital food for dinner. I think they do that on purpose. I cannot think of a single scenario in which anyone would enjoy hospital food unless they were starving.

Jim's Mom is at the hospital with him right now. He's recovering well. He's happy, and he's happy with the results.

And we got three really cool visitors today - the Director of Pastoral Care from our church, Mike; Jim's friend Ken, who's been a pillar of support for us; and best yet, one of the nurses, Chris. Chris wasn't working, but she knew we were there for the surgery. Now that is dedication. We were so happy to see her.

Love to everyone. We'll keep you posted on Jim's recovery. Things are looking good.

There's No One Like Mom

Let me start by saying that we seem to have returned to whole health here in our household, albeit a bout of cancer. Thank heavens, because the whining was really starting to get to me. Including my own.

Yesterday was the day that the shot to boost Jim's white blood cell count was supposed to start hurting. So far, so good. Admittedly, Jim is exhausted. More tired than I've seen him in several months. BUT, his Mom arrived yesterday to help us take care of the kids while Jim has his surgery on Wednesday, and I think that's helping him.

Most of you probably know that Rachel is a complete Daddy's Girl. I've always joked that my kids have the worst case of the Oedipus complex. Toward the end of last week, that fact became painfully clear - as Rachel was using her energy to recover, it made her a tad crabby. And when she's crabby, it's my fault. All of it. No matter what it is. Even if I'm a mile away, it's my fault. So obviously the end of the week got a bit trying. But there's an interesting element to our relationship. During one of her worst fever episodes, Jim tried to help her get a drink of water, and she just wasn't doing well with him. I picked her up and she hugged me and clung on as I got her some water. And, no matter what, she loves to have me tuck her into bed at night.

Sometimes, especially when you're sick, there's nothing like Mom. I believe that Jim is in good spirits and feeling reasonably well because his Mom will be here for the week. Today Jim and his Mom watched the kids, and I had the good fortune of going to Chicago to see the BodyWorlds 2 exhibit. Alone. A blessed two hour drive. Alone. An afternoon of human bodies injected with plastic. Alone. Another blessed two hours in the car, alone. Can a day get much better than that? I think everyone wins! Jim and his Mom got to spend a little quality time together, the kids got to spend time with their Mimi, and I got a respite from life.

Moms just have that je ne c'est quoi that no one else has. And every mom has just the right measure for her kids. (Well, most moms, anyway.) Moms have cool hands when you have a fever. They listen when you're feeling afraid, down, or alone. And they know just how to make you feel better. Only a Mom tucks you in just right at night. Only a Mom knows how much Nestle Quik to put in your chocolate milk. Only a Mom knows just the right time to visit or call.

We have an exciting week coming up. I'm glad Jim's Mom will be here to help with the kids, make a few of Jim's favorite dinners, provide comfort and support, hope and encouragement. Those are the things a mom does best.

Letter to the Public, and other things

Dear Reading Audience:

Please help. I've been trapped by a sick, whiny 3 year old, a screeching 10 month old, and a husband who's going through chemo. I'm doing okay but we have barely any bread or milk left even though I went to the store yesterday. They are torturing me by making me watch "Go, Diego, Go!" and "Angelina Ballerina" in a continuous loop. The big hairy one decides he doesn't like what I'm cooking for dinner after I've finished cooking it. The little girl threw up. And the little one poops in his pants, and I swear it, he giggles afterward.

Please send wine. Preferably red. Not too light, though. Something heavy - like a cabernet sauvignon that's enough to make my cheeks pucker.

Yours in captivity,
Kate

Just kidding. Well, sort of.

Jim started his new chemo regimen yesterday. He got sick last night, but that seemed to push him past a milestone - he's better today and he said that he actually has more energy than normal. With this new chemo regimen he's going to have to go in for a shot of something that boosts his white blood cell count on the Thursday after chemo.

We are both confident that "this is the one" - this chemo regimen is going to help Jim kick out the cancer for good.

Jim receives Cryoablation on Wednesday, April 4.

Uh-oh. I think they've discovered that I'm communicating with the outside world. They just caught me with the computer open. I'm doing better than my posts actually suggest, but God help me, it's back to Angelina Ballerina.

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.