saying what we mean, meaning what we say

Sometimes it's tough to get a family to say what it means, and mean what it says.

My family is the encylcopedia illustration of this. :)

So and so is being 'difficult.' That is English for 'we're fighting.' Or 'we're not talking.'
'You're keeping me out of your life' is English for 'I need to know everything.'
Umm...no, you don't.

'I don't know what's wrong with your father; he spent the last two days in bed' is English for 'he's being difficult and I don't feel like trying to figure out why.' It also means he has no items on his agenda that he feels compelled to get out of bed to do...but that's another issue.

Family. Sometimes you need 'em. Sometimes you can't live with 'em.

And sometimes they delight you. A. was selected for the draft for professional lacrosse, Chicago's team. And he put his name in to go to New Orleans to help rebuild franchises there. Steppin' out and steppin' up. I'm proud of him and excited for him.

Speaking of saying what you mean...Dr. P. has a new research fellow. He told me today that they've been discussing my case with the team (again) and when she arrived, I got a whole 25 seconds today. Dr. P is presenting me (again) at the team meeting on Thursday, to be considered for further surgery. Didn't actually ask me if I wanted further surgery...but hey, I have to keep remembering that it's all about her. And even though I was short of foie gras and whipped cream, her indulgences according to the 'Real Simple' interview, she was a little human this time.

Found out later that she's going on vacation over the holidays, won't be back until my next visit in the first week of January. So she must be the type who relaxes BEFORE the vacation. Anyway, it was nice to hear that it's a progress report of sorts, even if there probably won't be an answer until next January.

This 'survivorship' thing is a lot harder than it looks. And I do say what I mean, and mean what I say. Guess I'll just have to start blaming that on being direct (again) and not pass it off on the 'I'm dying; I can say anthing' that's been working for the last two years.

Cold and flu season

It started on Sunday, a little scratchy throat. I blamed it on the hair and the dust at the dog show.
But now it's Tuesday, and it's trying to be a full-blown cold. Stuffy head, fatigue, muscle weakness, dizziness. It had better not be the flu.

Erik wanted me to have a flu shot, but Dr. Personality insisted that it had to be in one of my 'off' weeks. Now I'm heading into treatment tomorrow with an upper respiratory infection trying to beat me, no flu shot on board, and I can't take anything. Kirshner is not going to be happy; I don't even know if he'll be able to treat me.

There's no fever (so far), so maybe he'll say it's a go for treatment. I don't want to get off schedule. I don't want a cold OR the flu. I haven't had either for three years, and now, suddenly, here I am all stuffed up. I haven't needed to take a sick day for chemo since I started back to work in July, but today I called in and said I'd be working from home, confining my germs to me alone.

These are the times that having cancer is hardest...can't take anything, just have to tough it out with turkey soup and peppermint tea and lots of water and rest. Okay, cold...bring it on. I'm ready for you.

Casey, CD NA RE

Casey earned his RE (Rally Excellent) title on Thursday, and got his first RAE (Rally Advanced Combined) leg today. He came within a minute of qualifying in Open on Friday, too...that CDX (Companion Dog Excellent) leg is so close.

The only problem is that I don't think he can handle three classes (Open obedience, Rally ExB and Rally AdvB) in one day, for four days in a row. I know I can't handle it...my brain was mush after working him in Open and I blew both of his first RAE legs on Friday and Saturday because I couldn't concentrate.

So from now on, it's the two rally classes, or open...not both on the same day. It will take longer that way, but when I limit us to the two rally classes, he passes and I'm not exhausted. When I try to do all three, I make silly mistakes...miss a station, turn and 'pull' him out of the honor, etc. He can get this title easily, if I just do my part.

God, those letter look good after his name, though. And he had so much fun being at a dog show again. I had fun being at a dog show again...maybe for the first time in a long time.

Dr. Personality

I suppose I should say a few words about Dr. Personality.

She actually talked to me last week during my visit. Cycle #10, and she was actually friendly, interested even, in how I was doing and was there anything new. Very different from October's visit, when she told me that the magic cure for gaining weight was to "eat less and exercise more."

Gee, Doc, thanks for clearing that up; I'd have never gotten to that wisdom on my own two feet. I suppose I should be grateful that she's the only doctor for the last year who's thought a five-foot-tall woman shouldn't be gaining weight, shouldn't weigh 200 lbs. She has absolutely no idea what I know about nutrition, or that I've been moderating a weight-loss BBS since 2002. But why take time to understand your patient? Maybe that's a coping mechanism.

But anyhow, last week she was in a human place. She was happy that my bloodwork was good, my BP was normal, and my side effects are comparatively non-existent. I wonder if that will mean that she sends three pages of comments to Kirshner in her report. I still can't figure out how she could write him two pages, single spaced. She hasn't said that many words to me in our entire history.

Or maybe she's just more human for the early morning appointments.

Or maybe I am just getting better at remembering that "It's not about me...it's all about her."

What are the odds?

My oldest nephews' aunt has leukemia, diagnosed last week. A friend, one of their neighbors who used to babysit them and who I know from the dog clubs, was just diagnosed with breast cancer.

This gives the kids a bilateral family history of cancer. Their aunt is at least 10 years younger than I am, early 40s at the oldest. Their mom's intestinal troubles continue, and she'll need regular colonoscopies for the the rest of her life--not just because of my disease, but because of her own illness. The family friend is my age. Why, suddenly, is cancer cropping up among us as frequently as the common cold?

talking out loud...

My father has the beginning stages of Alzheimer's disease.

He's not going to be one of those sweet older patients with dementia. He's difficult to manage, combative, argumentative--all the least attractive parts of his personality seem to be surfacing, and to the tenth power.

Tonight he called me just for someone to talk to. I have to work very hard to remember that he's operating from a diseased portion of his brain, that he's not responsible for the things he does or the choices he makes or the words he says.

But I don't know how to deal with his need to talk to someone, and my need to be in a quiet space, especially when those needs happen at the same time. He needs to talk out loud to someone. I need quiet space around me. I'm not comfortable making my needs come first all the time--but I can't be what he needs right now either.

And meanwhile, he just continues talking out loud...and tomorrow he won't remember what we said, or even that we had a conversation.

Cautious optimism...

The NYC oncologist ran CT scans last Tuesday before my latest treatment--and the scans show significant tumor reduction in my liver. It's maybe the first genuinely unreservedly positive thing that's happened since surgery in February. For a minute I feel like it's realistic to be hopeful, more realistic than its been since my diagnosis. For a minute I feel myself taking chances on planning, thinking about a future that may actually happen. For a minute...

A year ago Saturday I was sitting in Kirshner's office, listening to him tell me that I had a fatal disease, and that in my case, it likely *would* be fatal. A year ago yesterday I was in surgery for a mediport, so that I could start chemo on May 3--15 rounds of hand-to-hand combat with oxaliplatin, leucovorin, 5-FU and Avastin. The good news from the scans knocked the melancholy feelings I have about the anniversary of my diagnosis right out of the headlines in my head, made that anniversary just a footnote on the bottom of the back page for the day.

Maybe the good news can keep those headlines in 8point type on the bottom of the backpage for a couple more days. I'd really like to keep feeling this positive.

The view from the bleachers...

Bri plays lacrosse at Lemoyne, and even though it was cold and rainy, I didn't want to miss another home game. I've already missed two...one in the rain a few weeks ago, and one two weeks ago on a truly beautiful Saturday. Unfortunately, that beautiful day was only three days after a treatment, and my blood pressure was too low and unpredicatable. I could barely get out of bed. So I decided to brave the run, planning to show up for the second half and the tailgate after.

The first quarter ran very long, and I got there in the middle of the 2nd quarter. It was great to see everyone, and at first I didn't really notice the cold. No rain, but it got colder the longer I watched. There's some cold-holding penetrating chill factor built into aluminum bleachers, I swear. So at the end of the game, after I brought in the brownies for the tailgate, when Bri said he had to go I was more than willing to sit in my warm truck and drive him up to his dorm.

Its so odd how many of the kids seem to know me after only meeting me once or twice--they're not even West Genny kids, but others I've met during the odd dinner or lunch with Bri. Bri's roommate Brad gave me a hug, and Chris Moore and I had this complete conversation on the merits of owning technical rainwear in CNY. They are a very bonded group, and I hope that Bri has found a comfortable place with all of them. I want Bri to enjoy Lemoyne, to settle into it and take as much out of it as A. has taken out of Springfield. I want him to succeed, I want for him all the best things. And I show up and sit on those aluminum chill rails masquerading as bleachers, even when he doesn't play, so that he'll know that someone is always there--always thinking good for him, always supporting him. I want him to understand that, and sometimes when we're alone like on the truck ride up to his dorm, I know that he gets all those good thoughts, and feels me holding them for him. My biggest fear is knowing that I won't be here for him for as long as he's going to need someone in his corner.

But I hope that he understands that I'm always watching him, even when I'm not in those bleachers.

my brain in black and white

It's time I started to write this all down, what's happening to me, what's happening in my head. If I don't start putting things in writing, no one will ever see all the thoughts that have been coursing through my head, no one will ever understand.

My to-do list is yards long, and I keep losing track with each new treatment of what's been done, what still needs doing. A few days after a treatment, I try to organize things, but I can't stay focused on one project long enough to finish it. It took me all afternoon to pull my videos and beanie babies and put them boxes for Saturday's garage sale.

The chemo brain is much different with this treatment regimen than it was with the first one. Days 1-5 after a systemic treatment, I can barely think my way out of an open paper bag. Then the lack of focus seems to kick in and out randomly for the next 10 days. Then I'm back to no focus at all. And I'm not sure yet whether the chemo brain effects are worse after FUDR plus irinotecan, or after irinotecan alone.

BTW, you get FUDR and irinotecan for advanced colorectal cancer, specifically metastatized to the liver. I was diagnosed at the end of April, 2004. Prior to this regimen, I took 15 cycles of Avastin/Leucovorin/5-FU--until the doctors at Memorial Sloan Kettering decided that maybe they could chance operating on my liver and primary tumor. David Crosby drank his liver to death, and he got a whole new one. I did all the right things, but a liver transplant is not an option in advanced CRC due to the high levels of recurrence. Saying that 'life is not fair' doesn't even begin to describe this.