Embracing the insanity

Ok, just for my own sanity I have to make this perfectly clear. While all Asian people do share certain identifying features (i.e. some variation of the slanted eye, traditionally dark hair and dark eyes, a need to do laundry and cook noodles, whatever!), we really do not all look alike. However, after the third person TODAY made this remark, I really had to make certain that everyone knows….

I know I bear a resemblance to Margaret Cho.

In all honesty, if you’ve seen her lately, you can see what I’d look like 40 pounds lighter and with a stylist. But I know this! Way back when, Margaret Cho did a show at one of the colleges in Daytona, I got freaking mobbed at the mall. We went to see her perform in Orlando one time and people asked me for her autograph in the bathroom. Peter spent the entire night staring at the big screen at her and then looking over at me until I snapped, “What! Just say it!”

“You DO look like Margaret Cho.”

And now we move on.

Peyton had her clinic visit today. This should have been a pretty quick trip in as all she was getting was a push of Vincristine and a bagful of meds for the rest of the month….which she takes DAILY, PETER! Her port decided not to worth, though, and it required some port-style Draino solution to clear out anything blocking the path. Our nurse Cindy comes in the room, injects the stuff and runs out saying, “It has to sit for 30 minutes!”

She is evil. She did that because she knows that after clinic we head to Little Tales and she knew that this would make it so we didn’t have time. Evil has a name, it is Cindy. So, we had to wait around for everything to start working properly and instead of taking this time to gently reflect on the meaningful purpose of our lives, Peyton decided to pitch a verbal assault.

“You KNOW, Mommy, we should have gone to Little Tales first and THEN came to the clinic.”

“Next time, can Cindy just make my port work so we can leave?”

“Why can’t we just leave and come back when my port works?”

“I’m getting mad. Don’t make me go there!”

Don’t make me go there. Really? Because I LIVE there, little girl! I bought a house, I have a newspaper subscription and a Bridge club there. Welcome to THERE.

At about 11:00 the port finally started working, and by the time we got counts, chemo and all her prescriptions filled, we were walking out the door at 11:45.

Little Tales starts at 10 and ends at 12-ish.

Guess where we had to go? I took her down there with the express knowledge that we’d only have a few minutes to play, that everyone would be ready to leave as soon as we arrived and that there could be no more complaining. All was great, she got to see Dana and Kay and Adelaine….that was all she needed, a little love-fix. She didn’t even throw a hissy or anything when we had to go 30 minutes later.

As far as her counts went, all the numbers came back in the normal range. After explaining about her recent issues, Dr. Kerr , who knows my current level of crazy, decided to accommodate that craziness. I know that it’s probably just from an accumulative effect of almost 2 years of chemo added to the fact that her body has been through a lot over the past few years. She clarified that Peyton’s pain wasn’t coming from traditional sites that would alarm then for joint deterioration. She said that they would do a smear of her blood and check it out there, and then she offered that we could schedule to do a bone marrow aspiration at her next spinal tap. It threw me off, but then it didn’t. I was expecting her to tell me she was fine and it was all ok, but I know that this is all about talking in your soft voice around the crazy mom.

What we decided was that if:

A. Her issues continue and her counts stay good, we’ll do a bone marrow at the next LP
B. Her issues escalate and her counts start dropping, we’ll do a bone marrow sooner
C. Her issues subside and everything stays steady, we’ll nix the bone marrow

When it comes to covering all the bases, Dr K is a one-woman Yankees team. I agreed to all of the above, with the understanding that there is a big difference between “concern” and “alarm”. They are concerned about her issues, but with her counts staying steadily in a normal range, they aren’t alarmed. If there is a reason to GET alarmed, we will jump on it.

Do I think she’s relapsing? No
Do I pray that she’s not? Yes
Do I watch her like a hawk for every twitch and jerk? Yes
Am I probably making it into a bigger deal that it needs to be? Yes
Can I do anything about that? Yeah, not so much

Tonight she took her 6MP, 6 pills of Methotrexate, and her steroid. I’m anticipating a follow-up week similar to last month’s, which was rough on her.

Her newest glitch is that her lips have been chapped for months. I had to take her some lip balm to school because apparently she’ll drive her teacher insane with the repeated phrase “My lips hurt”. But in the last couple of days she went from having red, dry lips to having lips that were SO red people kept asking if she had on lipstick. They were swollen and very irritated. After her nap, she woke up and told me her lips hurt. I went to put some chapstick on her and there are a bunch of little blisters on her bottom lip now. I hadn’t realized that it was more than chapped lips, so when I asked her if her mouth hurt on the inside too, she said it did. She’ll complain because the pillow is too hot or because Rachael’s breathing her air, but she says NOTHING about the fact that she has open sores on the inside of her cheek. Go figure.

We haven’t had to deal with mouth sores in over a year, so I have to call in the morning and have them send out a prescription for “magic mouth rinse” and hope that makes it feel better. I’m also thinking that this might be the biggest issue behind her saying that her food is “Yuck”. I’m not sure how long the sores have been there and since she has no concept of time it’s hard to get a competent answer out of her.

Oh, I have to share that my friend Natalie and I were talking about the phenomenon that we are losing our minds. We put things down and cant’ find them 2 minutes later, we can’t remember what we walked into a room for and if we don’t write it down it might as well not exist. We compared stories tonight and she’s been on the hunt for her checkbook for over a week now, whereas I opened the freezer and found a softball….and I had to stand there a minute and really think about whether I put it there, or if it was one of the kids. Because, unfortunately, it’s not completely out of the realm of possibility that I was the one who put it there. I am forever walking around with something in my hand, get sidetracked and out it down and then spend the next few hours looking for the initial item. Put a softball in the freezer so I can reach in and grab some chicken? Totally doable.

I’m starting to think that perhaps I’ve inhaled a few too much chemo dust and it’s affecting me in new and strange ways.

f.r.o.G….fully relying on God
–Anissa