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.
Labels: Caregiving, Cryoablation, Siddique