Wednesday, March 31, 2010

Catching Up

Sometimes there are just so many things to report that it's easier to post nothing. But I'm going to try anyway.

First, the trip. I don't why it is that we had three cameras that got almost no use. But there is the one pic to prove we were actually there. It was the first time we've managed to stay together as a family the entire day, and I have to say I loved every minute of it. We had talked about getting me a wheel chair, but there really wasn't any need. Probably the best part of the day was the Golden Horseshoe Corral, and the mile-high chocolate cake. If you haven't tried it, I highly recommend it. It's the perfect way to unwind at the end of the day, with a really reasonable treat (assuming one person doesn't eat all five layers of that cake.) An example of the show, which is put on by Billy Hill and the Hillbillies: "We wrote a song that combines Disco and Country. We call if Crisco. We also wrote one that combines Rap and Country. We don't know what to call it."


I wish I could give the same glowing report on Six Flags. But if there's one thing I learned, it's that I'm a roller coaster wimp. I've always "volunteered" to stay behind with whatever child was too young or nervous to want to go on the big twisters. And sure, I did have a great excuse to keep my feet on the grown this time. But the truth is those feet had no desire to do anything else. But since the vast majority of people there were between 15 and 25, I don't think I'm alone. But I did enjoy my time in the kiddie land with my little grandbaby.

I also had the little problem of turning into a living, breathing water balloon. I'm doing much better now, but for a while there I think I was in danger of going splat if I fell down too hard.

Now that I'm home, I've had two rounds of radiation. And I guess my overwhelming fatigue is caused by the trip, not the treatment, because the doc assures me I shouldn't be tired for a couple weeks. And the doc wouldn't lie. But tired is tired no matter where it comes from, so I'm off to take a nap.

But first, the really, big, major, huge, news. I have a shadow! Like men get in the evening on their faces? I have one on my scalp. You have to really squint to see it, but since my Rob was the first to notice, I'm pretty sure it's legit. And a week ahead of schedule too.

It's almost enough to make me forget that there's a layer of SNOW outside on the day before April! Talk about major ickiness. Makes me want to go back to California. Anyway, that's the news for now. Off to bed.

Tuesday, March 23, 2010

Road Trip!

So here it is. We leave in the morning. One ten-year-old. Five (technical) adults. One car. Ten hours. Each way.


I need to hang onto good thoughts. This is a vacation after all. Mickey and roller coasters and sunshine. It'll be good. It'll be good. It'll be good...

Sunday, March 21, 2010


Brandon woke up with a fever and stuffy nose yesterday. This is dreadful for two reasons. Well, three if you count that he's miserable, but besides that: my immune system isn't at its greatest, PLUS we're leaving on our big trip on Wednesday and can NOT have people being sick.

My first reaction was to head to the doctor and demand he make him better ASAP. But then I came to my senses and realized that's not the thing to do on the first day of a low-grade fever and stuffy nose. So I loaded him up with all the things you can load a kid up on: water, vitamins, saline sprays, humidifier, etc. I watched him even more closely than I usually watch my sick kids. Probably took his temp a dozen times. And grilled him repeatedly on his symptoms.

By dinner he was getting just a little bit cranky. Okay, he was way cranky. But Dad made him eat at the table, since he didn't want chili spilled on the couch, which made him even crankier. He said his head hurt whenever he moved.

During dinner I observed out loud (in my worried voice, does this mean something? should I take him to the doctor now?) that one of his eyes was bloodshot.

That's when he made his comeback line, the way his big siblings do, ever since Napoleon Dynamite made 'YOUR mom goes to college' popular. Except he hadn't quite heard me right. And he was in a really fowl mood.

"YOUR eyes are bulging," he told me in the most sincerely cranky way possible.

After we all finished laughing (which he did not find amusing at all) his sisters decided that is the best comeback line ever.

Saturday, March 20, 2010

An Upside

This morning I got some tortilla stuck on a hot burner. While I was scraping it up, my Whitney says, "That's ok. Nobody can get mad at Mom, even when she messes up."

Gotta love that while it lasts.

Chemo-lite and Arm-Heavy

Wow, I just published half the title of this posting on accident, so I guess I'd better hurry and get the rest posted. I'm such a genius when it comes to this blog thing.

Anyway, back to my point. I announced three weeks ago that I was done with chemo, but that was only partially correct. I had six doses of what's known as TCH, which is a combination of three drugs: Taxotere, Carboplatin and Herceptin. And you'll never catch me complaining about Herceptin, because I'm convinced it's saving my life. But it does require a full years worth of doses, not just the six.

So Thursday I went back to the hospital for my seventh dose of Herceptin. It's administered by IV, the same as regular chemo. But I've been told that it'll be so easy compared to the other chemo that I'll be amazed. And the nurse on Thursday told me that the only side-effect she's ever heard of is fatigue. I usually research these things, but I was so eager for it to be true that I didn't. Well, Thursday night I hurt everywhere. I'm used to my legs aching, and my arm of course, but this was everything: neck, fingers, back, toes, rear end, everything. Rob said it must be the Herceptin, but I told him no, they said that would only make me tired.

Then I looked it up, and it turns out that 40% of people who get Herceptin complain of flu-like symptoms. 40%! I guess none of them complain to my nurse. But they were right that it was way easier, and I'm feeling better today. Though that nasty cough came back with a vengeance.

But that's not the real bad news. The worst part of Thursday was my appointment with my lymphedema therapist, where I learned that my arm has gotten even bigger than the last appointment. She called it "unfair" since I'm doing everything I'm supposed to. But then unfair is kind of the theme of this whole ordeal. My therapist has a few more things in what she calls her bag of tricks. The first was an even bigger and badder compression sleeve. And I'll tell you, nylons on steroids for the arm is perfect for summer. But here we go. The battle is on.

Wednesday, March 17, 2010

The Worst Part

Last night I asked my Rob if he knows what the worst part of having cancer is. The way he looked at me, I realized how stupid the question was. I quickly added that I meant besides that cloud of maybe dying hanging over your head.

"Yeah, besides that whole maybe dying thing, what's the worst part?"

And then I had to correct the question again, because there's a whole stew of icky stuff that could be considered the worst part: the constant pain, losing the hair, the fatigue, feeling sick to your stomach, and so on.

So I modified the question to: Do you know what ONE of the worst parts of having cancer is?

And here's the answer:

It's how constant it is. How it's always there. From the moment I wake up in the morning, to the clothes I choose, the hat or scarf I put on, the makeup I wear, the food I eat, the errands I run, the activities I choose, to when I go to bed, and even when I without fail wake up some time during the night--it's all influenced by the fact that I have cancer.

I can't think of a thing that happens during my day that isn't in some way touched by that fact. Even when I do something normal, like go to the movies, I have to pick an early show so I won't fall asleep in the middle, and carefully choose a head cover that looks semi-normal and won't itch after two hours or slide around when I lean back on the seat.

Everything's a process that, frankly, makes me weary.

Then there's the chance that I'll see someone I know, and they get that look, the one that's so full of concern. And even if I've been feeling fine, all of a sudden when I see that look I get all choked up and want to cry instead of saying that I'm fine.

I'm sure anyone who's been through a major illness knows what I'm talking about.

Taking a vacation next week will be good. I'm certainly ready for a break. But I worry that the little details (like how do I keep a hat on while riding a roller coaster?) will dampen it. Hopefully I can let it all go for a while. Or at least let it mostly go.

I doubt if I'll be able to let it all go for a few years - when that whole cloud of maybe dying thing has passed. Maybe I can let it mostly go when all the treatments and surgeries are done, which isn't for several months.

For now, I just look for diversions wherever I can and keep hoping for small fleeting moments of normal.

Tuesday, March 9, 2010

So how's this for a plan?

The cough in my chest is hanging on, but my energy is slowly increasing. I had the treat of tending my adorable grandbaby today, and was mostly able to keep up with him, though I am looking forward to bed even more than usual tonight. The fam is just hoping I improve enough for our trip in a couple weeks.

When I asked the nurse what to expect as far as energy during the radiation, she said, "You know how it is after a big day in the sun and you're just worn out and need a nap? That's what it'll feel like every day."

So I've been thinking, maybe if I wear beach attire to the hospital, and put Calypso music in an I-pod, I can trick my brain into thinking I've really spent the day on some exotic beach instead of a metallic radiated tube. That way, I can think of it as an awesome five-week vacation instead of cancer treatment.

I realize there are some flaws in the theory, but it's a work in progress.

Saturday, March 6, 2010

Taking Stock

Well, a week has passed since that last chemo, and I'm now (hopefully) on the upside of the after-effects. I'll supposedly be strong enough for radiation in another two weeks, but I don't know how long it will take for me to feel normal again. I marvel at how much the medical world has done to battle this beast cancer. And how much easier chemo has become. And while I'm more grateful than I can put into words for the gift of life, I still sometimes get caught up in wondering what happened to the person I was a year ago, and if I'll ever get her back.

As of right now: I do have some hair. Probably a couple hundred of them. They poke out about an inch in a comical fashion on my shiny scalp. I haven't worn my wig in weeks. I feel quite self-aware while I'm in it, afraid of it slipping out of place. And I've resigned myself to looking like a person who has lost their hair to illness, since that's what I am. So the scarfs that I never thought I'd wear have become my mainstay. About half of my lashes and brows have held on like troopers. My legs are surprisingly hairy, and I can't bring myself to shave them. How weird is it to say I'm too proud of those valiant hairs to shave them off?

My skin has held up fairly well, though it is like wrinkled tissue paper around my neck and eyes.
My nails are also in fairly good shape, though they are thin and short and the pink portion has a rainbow of varied colors. My stomach is sensitive and now considers dairy a poison. I can't get past the craving for all things salty and sour. My hubby tells me I'm scaring him with my fondness for hot dogs. Scares me a little too. Especially that potato chip thing. That just has to stop.

As far as energy, I have to catch my breath when I get to the top of a flight of stairs. I nap every day, sometimes for several hours, and my legs regularly feel like noodles. My favorite part of the day is bedtime, and I hate that about me.

My biggest focus of concern right now is my arm, which is both swollen and achy.

I hope to improve in all the areas in the coming weeks and months, even my arm. And while I'm getting a little on edge about the radiation, I'm feeling like it's time to get back to the act of living. Brandon auditioned for another musical this morning, so I guess life will happen whether I'm ready or not.