Smiley Faces

This sucks. I told DH that I'm feeling so much pain that I feel like I'm paying for all my sins. My throat is swollen inside so I can hardly swallow, every joint in my body hurts (Tylenol doesn't do shit for me), and well, the weather sucks. Can't blame chemo for the weather though.

Chloe is drawing in the "Time for Me" activity book for kids with parents with cancer. She drew a smiley face and arms and legs on the cartoon of the tumor and asked me if that made me happy, if it made me felt better. Yes, Chloe, it does. So now she's filling every single page with smiley faces with arms and legs. Some of them have hair too.

Speaking of hair, Chloe asked me when I'm going to fix mine. Kids are awesome. I love their perspective on things.

The other night, when the kids came home from being at their grandparents' house, they burst in the door and shouted, "Mama! Mama!" Mylo ran by all his birthday toys, ran up the stairs, and hopped into bed with me and started snuggling. Then Chloe followed. That made me feel both happy and sad.

Home

My parents just began their trek back to their home in Pennsylvania. They were staying with us these past two months to help out and be with the kids. Instead of crawling back into bed, I'm finding myself wide awake, feeling a simultaneous emptiness and relief by them going home.

I haven't really talked about them being here all that much on this blog; they kinda melted into everyday life. But I think that what kind of support, as I mentioned before, one has during cancer treatments plays a big role in the quality of life. As an example, last night I was snug as a bug in a rug when Dude sat beside me in bed, reading up on some of my breast cancer books. I felt warm that he was becoming informed about what we're going through, and even though I had a splitting headache, I managed to fall asleep as he rubbed my back while reading.

My parents, especially my mom, are understandably big worriers. My mom sometimes takes it to a whole new level all her own, where she talks herself into a chaotic frenzy; it's no surprise she has high blood pressure. So while she was cleaning and keeping care of the kids, she filled the air with, let's say, musicality and colour.

It's nice to have my house back to myself. That's honestly what I was looking forward to for some time. Of course, that means having the cleaning all to myself; the changing poop diapers all to myself; etc. But I miss having control over how my house is maintained, even though my mom always does an impeccable job. After all, she did raise me, and I got a lot of my anality for cleanliness from her. So my internal fight for the vacuum was an issue.

They want to come back right away. I want them to stay away for a little while. I want to reclaim my space and see how I'm able to live my life without my parents taking care of me. I want to be a grown-up for a bit again.

Having three generations under one roof is both wonderfully supportive and sometimes suffocating. At the moment, this very moment, I'm not sure which way to breathe.

In Need of Support...?

Even with all the people supporting me and sending me good vibes, cancer can be lonely sometimes. But in order to get out of the lowest low, cancer also needs to be liberating.

I'm trying to understand the whole concept of "support person." You don't have a support person in your life, until you get cancer. But shouldn't a partner, parent, friend, etc. always be a support person, no matter if you're sick or not? What needs to change about a person to elevate them to the status of support person, or to place that extra weight on them?

My husband has been defined as my support person, as one would naturally think he should be. My parents and in-laws also provide a huge amount of support by taking care of the kids. But really, I'm not sure how this scenario is different than it was six months ago, before I was diagnosed with cancer.

I think I've gotten used to the idea of Dude being the support person in the definition of him being here more, that he's with me and the kids more, spending time with us. But he's a busy person: breakfast meetings, lunch meetings, dinner meetings, press conferences, 8 PM coffee meetings, academic conferences, radio interviews, newspaper interviews, office hours. And when he's home, there are urgent emails and phone calls that he must attend to. This week he's in Philly for a conference. In December, he's in DC. I have to admit--it doesn't sit well with me. My immediate reaction is anger, bitterness, and feelings of abandonment. He gets to live his life, as usual. I have to stay home with my cancer.

I have to have my moment: I cry, think of all the ways he's betraying me by living his life, going about his business, paying more attention to the community and the university than to me. I think of the counselling sessions at the cancer agency, and for someone as brilliant as my husband is--why doesn't he get it?

But what's there to get? In the bathtub, I have my pity party. When I'm done, I see all the strands of snot flotting among flakes of skin and eye lashes. I allowed myself to shed the negative energy.

The day DH left for Philly, I had a really great day. I made myself get out of the house, exercise and do a lot of walking, write some poetry, and enjoy the sunshine. Yesterday was pretty good too. The weather has taken pity on me. It's not so bad to stay behind. It's actually pretty good.

But I still don't know what I'm supposed to think about this "support person" title. I'm not sure I like it. Dude is my husband, and when he really needs to be there, like when I'm getting chemo, he is. When he's not there in an everyday scenario, I do feel a little bad, like at night, when I'm sitting in bed and it's half empty. Or when I'm eating by myself at dinner. Or when I'm putting the kids to bed by myself, first Mylo, then Chloe, who asks where Daddy is. In addition to the word "meeting," they know the word for "conference" now.

I'm back to why this is different from life before cancer. It's not. Should it be any different? What needs to change? That's what I'm struggling with.

DH and I are similar--that's why we're together, is it not? We both find it hard to say "no" because we believe in the greater good. So when I'm not feeling so pathetically lonely and abandoned, I'm really proud of all that he does, that he's so committed and passionate. But yeah, sometimes, cancer is a party of one--and the challenge then is to see the greater good, in anything. The upside is the feeling that comes from re-learning how to be independent in the hardest of times.

Hm, how do I end on an uplifting note? I'm taking applications for substitute support people to come read bedtime stories to my kids, sit in bed and rub my back until I fall asleep, and cook me dinner in your underwear. Any takers?

Sick

Chloe's sick. So I should stay away from her. This is impossible--and not something I want to do anyway. At six this morning, I heard a little whimper downstairs, and it went straight to my gut. Even in the deepest sleep, I can feel my kids needing something, no matter how quiet they are. Of course, no one else heard little Chloe crying, so I went downstairs to see what was the matter. She had to go pee but was afraid in the dark. So I helped her, and she coughed all over me, and I didn't think to turn away. Then I put her back in bed and gave her a kiss.

Step 1: Remember that I have virtually no immune system.
Step 2: Stay away from crowds and sick people, including my own kids.

I think I'm fucked. I can't remember the first step, and I can't be bothered with the second one. This is too hard.

Last night, I had a bad moment. Actually, last night was good. People were dropping by to pick up their race shirts, and my friend Emilie came to hang out. But when everyone left, and I was in bed, I felt like crap. Not because of all the company, but just because of the chemo--and because of the horrific realization that I'm only on cycle 3 out of 8. Then I panicked: how the hell am I going to make it through EIGHT of these cycles? EIGHT???? I know people have done it, but it seems like a long-ass road ahead.

Sometimes, I really hate realizations.

Brandy Interview Slideshow

[i did this quickie slideshow...a bit self-indulgent, but what about this blog isn't, after all? enjoy...or not!]

Without Mincing Words...

I feel like shit. This is not me complaining; this is me stating a fact. I've had a headache without interruption for a week now, with the only relief being taking a sleeping pill and passing out cold. I've tried extra strength Tylenol; I've tried other things. I'm not allowed to take ibuprofen or aspirin, so that's out. The only thing I haven't tried is a hammer to my head to at least justify the pain. This is definitely at the top of my list of things to bring up at my appointment with the oncologist on Tuesday.

And while I'm being honest, I have to say that I'm having a bit of a difficult time dealing with not having privacy as much as I would like. It's nice having my parents here to help out, but what that also means is that the kids are here in the house more, and most of the time, when I need to have some quiet time, I have to lock myself in my bathroom, as that's the only place in the house to achieve privacy. Today, Dude took my parents and the kids out to lunch with his parents, and it was the first time since my parents arrived that I've had the house to myself for a few hours. Basically, during that time, I was able to eat lunch and take a nap.

Taking a nap is a challenge with the kids around too because Chloe wants to be with me all the time, but she doesn't really lie still in the bed. She's humming with energy, so she likes to squeeze my arm and sing songs while I'm trying to sleep.

Yeah, so, taking it all in stride is not my forte. I guess it never was.

Speaking of taking it in stride, does anyone in the Vancouver area want to take some strides and form a Friends and Family team for the CIBC Run for the Cure in Vancouver on September 30th? The bummer is that I can't run right now with my busted leg, but I'd still like to walk, if you'd like to join us for the 5K! To get more info, click here: Vancouver CIBC Run for the Cure and leave a comment or email me if you're interested! Registration deadline is in a couple weeks. We have a team if we have 10 or more people.

Okay, thanks for your attention to my head.

Co-in-kee-dink

Hm, I used to use that word--coinkeedink--a lot as a kid, but I never saw it in print before. Anyway, I like it when weird things happen. Like today, when I was walking down Davie Street before my appointment for a CT scan on my leg...For some odd reason, I had this thought: "I wonder if I'll run into Mike C.?" Then I was kinda drawn into the Book Warehouse moments later, where, as a matter of fact, I ran into Mike C. He asked me how I was doing, and I said something like, "I'm doing. . .whatever"--which aptly describes the whole cancer thing. So we had a nice chat, after which I was drawn to the back of the Book Warehouse, where I found two extremely discounted books: The Summer of Her Baldness: a cancer improvisation, by Catherine Lord, and A Safe Place: A Journal for Women with Breast Cancer, by Jennifer Pike. I bought them both right away! You would think that because I like making handmade books and that I am a big journaler that I wouldn't dig guided journal type of books, but I actually find them to be useful sometimes. Anyway, I'm really excited about these finds! And it was nice to walk around town, just looking at storefronts and everyone enjoying the last sunny days of summer (which we didn't have much of in Vancouver this year).

Then I came home. To my parents and kids (Dude is in LA, and I wish I had gone with him, taken the risk). My parents, of course, are concerned about me and came all the way from Pennsylvania last week to help out for a couple months. But what I don't really dig is being treated like a complete invalid. At the moment, I'm feeling completely fine, but my mom kinda won't let me do simple things like heat my own food in the microwave or wash a spoon. It's driving me a little nuts, but I'm trying to keep things in perspective. She wants me to rest, but I don't want to be bedridden! So I'm trying to let her know that the best help is taking the kids outside to play or to the park. It's hard to balance out having loved ones help while also trying to maintain a certain level of independence. And despite my attempts to communicate my wishes, Mom still pushes me back to my bed.

I. Have. A. Headache.

So, what to do? I haven't played the shakuhachi in a while. Maybe now's the time.

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.

Family Art Project

How am I feeling today? At the moment, I'm okay. I went to see my thesis advisor this morning at UBC. He's super supportive and encouraging and kind, which is a huge relief in terms of my decision to take a year off from school. The creative writing department faculty and my cohort have been incredibly generous and wonderful, and it really makes me feel secure about this decision.

After we left school, the hubster and I went to buy supplies that might be needed at some point: air filter masks, medical gloves, neck warmer, slippers, Tylenol, and People magazine (a supply I need now). When we came home, I felt so exhausted and pretty much slept or lounged around in bed for the rest of the day until dinner. Fortunately, my nausea has subsided somewhat, and I was able to enjoy dinner with my family and my sister- and brother-in-law, who were so kind enough to order dinner for us.

Now, I'm back to feeling a bit tired. But I did promise pictures of our fun family time last night, so here they are!


{at the chemo ward at the cancer agency: pigtails!}




{the first cut}




{my technicolor mullet}




{dude takes over: photo by chloe!}




{chloe's turn!}




{mylo wanting to get in on the action}




{eek! watch the neck!}




{mylo's turn!}




{shiny happy head.}

Who Needs Hair?

I did it...we did it. My whole family, even the wee little lad, had a hand in chopping off my locks tonight. I will post a more detailed play-by-play when my camera battery is recharged, but here is the result (taken with Chloe's camera...yes, our 4-year-old has her own digital camera--so what?).



You can't really tell from this shot how awesome the haircut is, but like I said, that will come tomorrow sometime. The shortness really brings out the array of colors, so it actually looks better than when it was longer.

As far as the chemo goes, I felt fine until about 5pm, when I guess it started kicking in and a big ball of nausea sat in my stomach and I got the worst headache. I took the pills they gave me, but it hasn't helped a whole lot. Plus, my forearms are strangely numb. This wasn't listed as a side effect, so I'm going to call the number they gave me. Maybe. Or just take more drugs.

Okay, time to try to pass out.

A Blast from the Past for a Laugh

My BFF's mom, Vicki, sent me an awesome picture from the early 1990s, when BFF Lisa turned sweet 16. She thought the picture would cheer me up, and it totally did! It brought back awfully embarrassing moments of being NKOTB fans to the core, tie-dyed peace t-shirts, and phasing into bandannas and flannel grunge. I asked Lisa if she would mind me posting the picture on the blog for kicks, fully expecting her to say hell no. I know how she gets mad when people post pictures of high school daze, because she thinks those days sucked and she didn't have much self-esteem. But you know what? We had a helluva a lotta fun back then. And the picture reminds me of the laughter--and I do think we look pretty damn cute anyway! Goofy, but cute too!

Much to my surprise, Lisa gave me permission to post the picture! This small gesture, I know, is actually a big gesture for her, and it really warms my heart.

So here's the picture, and here's to youth and joy and laughter and memories and cheeziness and NKOTB!

Going Home, or not

Last night, I spent a couple hours scanning and touching up pictures of my brother-in-law for a video montage at his memorial service. DH is picking out the music because he and his brother are, like, a decade or more older than me, and I don't know what old people used to listen to (joking!). Anyway, ever since his brother passed away two weeks ago (holy shit--has it only been two weeks?), all the family, especially his wife, have been focused on the arrangements, thinking about what he would have liked. Got me thinking about my own death, which folks, I hate to break it to you, is going to happen--just hopefully not for another 40 years or so.

Okay, so I don't plan on dying any time soon, but here it is--NO WAY, NAH-UH, NEVER IN A MILLION LIFETIMES do I want to be buried in my hometown, Mifflintown, PA. I say that now, in front of whoever the hell is reading this--as my absolutely, positively last word on the matter. Sure, it's where I grew up, and it's pretty, and it's peaceful, and all my white family lives and dies there, but growing up there I felt so trapped in such a small town, I couldn't wait to hightail it out of there. I mean no disrespect to my family whatsoever, but they know it's not the place for me. And I want to be cremated (I am, after all, a fire sign and a wood rabbit, so back to ashes for me). As for my ashes, what to do with them, I haven't thought about that all that much yet.

Word travels fast in my small town. And my extended family takes up a big piece of the population pie there. I think by now, the whole town knows I have cancer, and my name has been uttered and shouted in prayer circles and placed into Bibles. Which is cool because shit, I need all the help I can get, even though I myself don't subscribe to any religion. If people say they are praying for me, I'll take it.

On a completely different note, DH is having second thoughts about this trial. One of the main areas of concern with this trial is that because they want tissue samples from the tumour area to see if chemo combo is causing any shrinkage, I have to do chemo first. He really wants us to consider the normal way of going about things, which is to do surgery first. So he read up on it last night, we'll call the trial nurse with our questions, and think about it some more. I want to make sure we're confident about what we're doing, cuz this ain't like buying a car or something, where we might not be satisfied with a term here or there. He's the hunter and gatherer--of information. Me? I have a boob that's hella angry with me.

this wacky cancer business

I have my first appointment with the oncologist tomorrow. Today, my parents called and asked if I heard anything from the doctor. I lied and said no. Why? I haven't no idea. Doesn't make any sense to me. But it was kind of like this juvenile impulse--like when parents ask their kids what they did at school and the kids say, "nuthin'." I guess it's also kind of like now, they're worried about *when* the doctor will call, which might be slightly better than worrying about the upcoming appointment and what will be said? Yeah, I don't know.

Honestly though, I feel pretty much the same, except everyday, I wake up, walk to the bathroom, take a piss, and say, "Shit, I have cancer." But really, it can't be that bad, can it?

On the upside, I had an idea that if I have to get a mastectomy or something, I'm gonna get some nice fake titties and make a t-shirt that says, "Bionic Boobs." That'll be really hot, especially with the new Bionic Woman series starting in the fall.