Caught

My body is becoming soft from nonactivity, while the veins in my left arm are hard from the chemo. When Chloe squeezes my arm as her sign of affection, it feels like a hose with the water on, but knotted up in the middle, the pressure building. Likewise, my mother doesn't understand that her tastebuds are not mine. What she buys for me at the Vietnamese market are delicacies to her, and on an average day, are to me as well; but now, they make my stomach roil, causing a retching reaction. She leaves the food on the table with the hopes of a miraculous recovery of appetite.

It's a bit difficult to make anyone understand what the immediate reactions of a chemo dose are. The first week is the worst; and it gets worse by the dose. It's a tug-of-war of feeling okay one second, and not feeling quite right the next. So much limbo and not knowing what to do with your own body.

Eventually, the strangeness wears away, and some semblance of normalcy reappears. But between now and then, all I want to do is hide from those who want to understand the most but cannot.

Pubes. . .

Yes, they fall out! And don't even get all embarrassed from reading that cuz some of you have asked me that question, so I know that even more of you are probably asking it in your heads.

My moustache--hasn't come out. So I guess not all hair is victim to chemo. Damn!

My armpit and leg hairs--I haven't noticed that they are falling out, but they've remained stubbly since I last shaved over a week ago. And I darenot shave now, because if I get cut, the chances of infection are pretty high.

Eyebrows and lashes--should fall out but haven't thus far.

I still have thin patches of hair on my head, mostly where my brain stem is right above my neck. But mostly, my head is just one big old white itchy noggin. I've been putting tea tree oil and gel on it to relieve the itchiness.

And the hairs on my arms, fingers and toes look unfazed. So much for me being like one of those creepy hairless cats, which I swear are the work of the devil.

Poor little Chloe is trying to understand the whole "Mama is sick" thing, and keeps telling me that her hair is falling out too. I'm not sure how to talk to a four-year-old about this stuff. It's a tough age. The programs at the cancer agency for kids with parents with cancer start at age 6, nothing for littler ones. But I'm just trying to keep her involved in whatever I can, to expose it rather than hide it and make her feel a part of the treatment and recovery, but I'm not sure if that's the right thing to do.

As for Mylo, he just keeps saying this and that hurts. And he repeats it, over and over and over again. It's even tougher to talk to him, and I have absolutely no clue about how to get him involved, as his primary interest is destroying things and beating the crap out of them. At least with Chloe, she's into the whole girly make-up, dress-up type thing.

This week, I've been feeling okay, even though my WBC is at its lowest, from what I was told. It's kinda a deceptive, dangerous state to be in. Cuz I feel alright, but I know that if I get the smallest injury, I have to be really careful. A couple days ago, my finger accidentally pushed lightly on the vein where they took blood from last week. I have this routine blood work done every 3-6 months, and it always heals right up. But when my finger touched the spot--a week after the test--it hurt! I could feel the bruising from something done a week ago. Then yesterday, as I was lighting some candles, my finger touched the hot metal on the lighter for less than a second, and what normally would have been a practically non-existent burn hurt like hell and swelled up a little. So I had to put Neosporin and a bandaid on it, even though I could barely see where it was burned.

It's difficult for my mind to understand that my body kinda sucks right now cuz I'm used to being so active and running around all over the place, not giving a rat's ass if I trip or fall or be clumsy and all that. Anyway, I should rest up because my next treatment is on Wednesday.

Mifflintown, Pennsylvania 17059

My hometown is small--really small--especially people-wise. Which means that if there's any gossip, it travels faster than the speed of light, across county lines, state lines, even across the country and across the U.S.-Canadian border to here. It also means that gossip is sometimes, usually, mostly, maybe, probably, kinda connected to someone I'm directly related to or someone that I might have been related to somewhere down the line a hundred or so years ago. I think more people live along my one block in Vancouver than in all of Mifflintown. I think there are more churches than schools, and that the church to people ratio is about 1:9. This post is for Mifflintown.

I gather that my name has been passed among churches because I've been getting a lot of cards from people's whose names I don't recognize, but I do recognize their surnames. I also got some cards from people from my high school class. All this is really awesome. It's funny when people write, "I know you aren't religious, but I'm praying for you anyway. . ." I totally appreciate that and am grateful because while it is true that I don't ascribe to any religion, I am a spiritual person and believe in the spirit of life and some sort of afterlife that exists for spirits, so I do feel the positive vibes that people are wonderful enough to give out generously, even if they don't know me at all!

As for my hair, mine is almost all gone. I still have little splotches here and there that annoy the fuck out of me, but I'll just let them be for now. The tugging and rubbing on my head is getting old, and I have better things to do. Today, I'm getting a CT scan on my leg where I have a stress fracture. I'm surprised that I'm getting this scan because I think they pretty much ruled that it's a stress fracture in my leg, but I guess they want to make triple-sure, which is a weird thing for Canadians, who don't believe in unnecessary, or excessive, testing (it costs money). But hey, if they wanna scan my leg, great!

I've been wanting to eat like crazy. I guess with this chemo, at first I want to puke my brains out, and now, the steroids are kicking in or something, cuz I'm never full. But I'm trying to keep the eating normal and not gain a crapload of weight. So far, so good.

On Monday, Dude and I went to a free fireside chat session at Inspire Health, which is an integrated healthcare organization for cancer patients, which just means that their doctors and staff help you find ways to cope with the side effects of cancer treatments and optimize health and wellbeing during these times. After the fee for their two-day seminar and membership fee, access to their doctors and programs are free, but they also have a naturopath and acupuncturist if you want to take advantage of that, for a fee. I feel super fortunate that we live in a place where such a thing exists!

So yeah, thanks for reading the blog, you in Mifflintown, Vancouver, Pittsburgh, Germany, California, Seattle, New York, Madison, China, Florida, and wherever the hell you are!

Rock on.

Growing and Not Knowing

This sucker is growing fast. Last week, when I went into see the trial nurse and oncologist, I told them how the pain has moved from the site where I first discovered the abnormality (on the left side of my right breast) to just near my armpit. The trial nurse straight up told me that the tumor is growing, not faster, but exponentially--which to me, just means faster cuz I mean, the sucker doubles and doubles and doubles some more. Then when I got the core biopsy done last week, I asked the technician (who was a tad clueless) to move the ultrasound thing over to my pit to check out what was going on there. So instead of just seeing the one lymph node I was expecting to see, I saw two--the bulging one that you can now feel by touch without having to look for it (before, the oncologist had to find it and push into my pit to locate it), and a smaller one beside it. So I'm like--getting this fucking shit out of me now!!!!

But you know, the consolation is that Chloe and Mylo have no clue. So everyday, I'm just Mama. Not Mama Who Has Cancer. They make the day go by quickly with all that's involved in raising an almost-four and almost-three year old. They want to snack, go outside, destroy spider webs (I discourage this, but what to do...), listen to sea shells, make up stories about caterpillars eating ice cream and cookies and going into the cocoon and coming out fat butterflies, count and point out colours of trees and mountains and houses and cars; they want to protest naps and baths, but when they nap and bathe, they're happier. Chloe saw the big bloody strips and gauze on my biopsy site when I was changing clothes the other day, and she asked me if I had a boo-boo. I said yeah. She asked me if I was going to the doctor. I said I already went. She asked me how many doctors. I said two. She said, "Two doctors?" For some reason, it really intrigued her. Kids really have such a sense of wonderment. And then she wanted to paint her fingernails and toenails, which we did. Now, I'm really into painting nails.

As corny as this is, I'm trying to take my lessons from the kiddins.