Long time no update!

I have been busy... real busy. Moving back to SF next weekend, still job hunting, fixing up the scooter, purging all of my posessions and old memories. Life after cancer is a wonderful and terrifying thing- my body feels stronger with every passing day, but my psyche is taking quite the beating. I feel hollow and numb. When anxiety builds up and becomes too much to handle, I simply shut down. At times I'm unable to run simple errands, or even update the blogs I'm committed to. Though chemo was the toughest trial of my life, I was able to revert to a safe, catatonic state in which I had no responsibility other than getting well. Now I've got to start living again, hurrah.

I see that this blog has been listed as a Top 50 Cancer Resource on asbestosnews.com. To whoever wrote the article and the touching review, thank you! I recommend checking it out, it's got links to many other fantastic blogs in the young-adult cancer community.

Occasionally I will get emails from others who are just beginning this journey and have somehow stumbled upon my blog and found inspiration in my story. I LOVE receiving these letters. I am humbled and deeply grateful that this blog is doing exactly what it was intended to do. It validates my entire cancer experience.

In other news, my hair is gowing back! IT COMES BACK, trust me. It took about a month, but now I've got eyebrows and armhair and little downy fuzz all over my head. Lately I've been having frightening hair dreams- last night I dreamt I had an afro, while last week my hair came back in a ring around my head. Terrible!

Oh, another thing. I recieved my retroactive disability check yesterday! Holy. Crap. I am so, so thankful that I took the time to fill out all of those forms and pester my oncologist for weeks to get a testimony. I urge any of you who haven't considered SSD to talk to a social worker and see if you're eligible. I hadn't worked "on the books" since 2007 and still qualified. Without it, I couldn't possibly start my life again so soon. More info at www.ssa.gov.

Here are video/pictures from my surprise birthday party last month. It was ridiculous, the amount of love I felt that day...

Madison

I read in Madison with Kathleen Rooney, under the sign of death and next to a workbook on phobia and anxiety. I don't like this picture of me but it shows that my hair has grown.

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.

Wiggin' Out

Today, Chloe and I went shopping for wigs with some UBC Creative Writing peeps of mine--Jamella, Claire, Meghan, Pat, and Kellee. I was going to go sans kids, but I noticed that Chloe's been wanting to hang around Mama a lot more lately, so I didn't want her to feel left out. She had a blast (even though in the pictures, she looks like she thinks I'm a total freak)! Of course, she wanted me to go for the red, blue, green, and purple wigs. But she liked my choices in the end.


{green monster}



{bobbin'}



{one of the wigs I brought home--kinda scarlett o'hara-esque. picture taken by chloe.}



{the other final purchase...more of the everyday stylin' wig. pic also snapped by chloe bean.}



{me and mylo, pic by chloe. i also bought a hat with a skull on it...a skull cap, in other words.}


To be honest, I was kind of anti-wig when I found out I would be having chemo. But I really like the wigs. I think they kinda rock. My mom even wants to go buy some now! So I might make a second trip to the wig store. For some odd reason, I feel like putting "Red" on (as I like to call the curly red wig, though the tag says its name is "Jocelyn"...the other one doesn't have a name, but it is made out of real human hair, which makes it softer), and kick my heels up, and sing through the streets, "It's Raining Men." [I'm hoping Jamie won't read this, because he will definitely be here in two seconds to take me up on that.]


Okay, now back to tugging out my remaining hair. Up next--henna head!

Spa

At the moment, I'm kinda anti-computer. But I like showing pictures. Maybe that makes me a narcissistic bitch. Maybe not. But here's why I'm anti-computer: because you can't take the computer in the bathtub without the risk of electrocuting yourself. So until they make water-resistant laptops. . .

Here's where I spend a lot of my time nowadays:


{my home spa}




{. . .with new washcloths. . .}




{. . .and a glass of chardonnay, a pitcher of lemon water. . .}



[By the way, funny thing I discovered: lemons float, limes sink.]




{yesterday, my hair started falling out. Or rather, it started coming out easily when tugged on. I sat in the tub for an hour, massaging my head, rubbing vigorously, tugging with my forefingers and thumbs, pulling out little black clumps. Kinda like weeding, only taking much longer. Guess I have a lot of hair. Now my head just looks like a poorly clipped shrub.}

Stuff!

What's been nice is that lately, some days are like my birthday! Today, for example...a random Sunday. But who's that at the door but the nice Canada Post delivery guy with a box of stuff! From Pittsburgh, Pennsylvania! I took the box and bounded up the stairs and shouted to the kids, "Mama's got presents!" Of course, when kids hear that, what they hear is, "Mama got presents for US!" But it was cool--I explained that Mama's friend Auntie Lisa sent ME a bunch of stuff--and they were just as happy helping me open it all!

Lisa is awesome. Not only did she send me stuff (a tradition that we have kept up between the two of us since high school), but she got her co-workers at her newspaper to contribute stuff as well! It was so cool to see how people gave me--a complete stranger to some of these people--something meaningful to cheer me up! THANKS SO MUCH FOR THE STUFF, YOU GUYS!!!





{Chloe's trying to decide which item to pilfer. . .the pencils or the lip gloss???}



{Like Mama, like daughter--she tries to get away with the mega-pack of lip gloss (I ended up giving her 2 of them).}



{just me checking out the stuff!}



{stuffies that people have given me: a breast cancer awareness bear from Vicki; a ladybug from Jamie; and a handmade doll that Kristina whipped up at a craft party, my favourite part being the tag that says, "Kristina Wong made this instead of smoking crack"}


And I leave you with this: a creepy, don't-fuck-with-me badass picture of the new Me, which Henry says he actually takes a liking to quite a bit. He says that the 'do suits me well, that I have a "shapely" head. HAHAHAHAHAHA!!!!! Sorry for the maniacal laughter, it's just that no one's ever called me shapely before....

Cool Hair!

I was walking back from my therapeautic touch appointment (which I missed--long stupid story), and this woman was coming at me from an intersection and shouted, "Cool hair!" with her thumbs pointed up. I honestly had no idea what she was talking about, so I looked around. She pointed at me and smiled. I thought she was insane. But then I realized that she was talking about my hair, and then I felt bad. I hate it when those things happen. I just wasn't feeling like, "Oh, yeah, she must be talking about how cool I am!"

I feel so anti-cool. I've got perpetual heartburn, which totally sucks. I get heartburn if I drink water, if I swallow, if I sneeze. I wear fuzzy slippers with hard soles around the house so that I go clomp, clomp, clomp. Last night, some friends came over for a So You Think You Can Dance marathon extravaganza, and it sure pooped me out. And now, I'm using the word "poop" in a nonliteral sense! I've lost my damn mind.

Went to a naturopath yesterday. He's the brother of a friend, and they don't mess around. But to be honest, as much as everything costs, you have to wonder--is this really going to work? I'm sure that level of skepticism is present for many. But in explaining how chemo cashes in on the short-term effects for the long-term costs (or something like that, I was never good at economics), it seems like the naturopath thing is the thing to do. I mean, I like my head. I'd like to keep my head working like it has been working. So we'll give her a go and see what happens.

I'm seeing an art therapist today too! You know, with all these therapies and stuff--maybe cancer isn't so bad! I wouldn't be seeing all these different people otherwise.

But no, I'd rather not have cancer. Cuz this heartburn still sucks.

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, Henry 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}




{henry takes over: photo by chloe yu!}




{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.

Toxic Avenger

{the view from the chemo ward at the cancer agency}

I got home from my first chemo appointment, and I feel okay. For the first hour, I was the only patient in the room, and then an older lady came in to get her treatment. She had a "port" in her chest, which the nurse told me gives easier access to administer the drugs rather than the iv. It looked a little weird to me though. So I'll stick with the veins for now.



I'm a walking block of poison. If I puke, whoever's cleaning it up has to wear gloves and not come into contact with it. I have to flush twice when I pee to make sure the poison doesn't linger. And Henry wants to chop my hair off now rather than wait for it to fall out so that he doesn't accidentally nick my head when my white blood cell count is low. That whole WBC thing is serious. The nurse told me I have to wear slippers around the house so I don't get cuts or scratches on my feet. Any little itty bitty cut or whatever could give me an infection. And sadly, she also told me that I can't go to LA in two weeks. But I'm going to double-check with the oncologist, even though Henry wants to agree with the nurse and say I can't go. Bah!

So I'm going to cut off my hair tonight, but we're going to do it in front of the kids. I'm afraid that if they don't see me cut my hair off, it would freak them out to just suddenly appear hairless in front of them.

I swapped my California driver's license for a BC one this morning, while I still have hair. So I'm almost a full-blown Canadian! I have yet to take my citizenship test, but how much do I really need to know beyond the fact that Canada has ten provinces? It is 10, right?

Other than having the taste of rusty nail in my mouth, I'm okay. And it's a sunny day!

Pre-Chemo Party--come colour brandy's hair!

Well, apparently, the three weeks I had before I start chemo aren't three weeks (is that grammatically correct? i can't tell. i mean, "three weeks" is one unit qualitatively speaking, so should it be "isn't" rather than "aren't"...?) anyway, the rest of my tests happen on July 30th and 31st, with an appointment to go over the results on August 1st, and from what the oncologist said, the chemo could start very soon thereafter. So, it's possible that my chemo will begin at the beginning of August.

Henry and I are going to Hawaii on Tuesday through Friday, and then Henry's off to LA for his brother's memorial service. The only time for a pre-chemo party is THIS SUNDAY, JULY 22ND. If you are in the Vancouver area and would like to see me before toxins are flushed into my body, please come to my house this Sunday. It's a cheese / wine potluck--and we will also bleach my hair white and dye it god-knows-what colour! A fun art project for all!!!! 6PM my house. If you don't know where I live, email me! And suggest a colour! I'm leaning toward electric blue, but am open to suggestions!

Lesser of Two Evils

Tonight I walked to the Lesser of Two Evils chain bookstore and went wild in a Cancer-Bitchy way. I had a $50 gift card as part of payment/thank you for two workshops I did in a high school this fall. I was also paid by check and got a clock that had a plaque with my name on it. We couldn't get the clock to work so L pried off the plaque and we put the clock out by the Dumpster. I put the plaque on one of my file cabinets. At Lesser of Two Evils I bought Pink Ribbons, Inc: Breast Cancer and the Politics of Philanthropy by Samantha King (who teaches at Queen's University), Uplift: Secrets from the Sisterhood of Breast Cancer Survivors by Barbara Delinsky, and Cancer Made Me a Shallower Person: a Memoir in Comics by Miriam Engelberg. Got them all in the same section of the store. They cost me the whole card plus about $7. The one I wasn't sure about was Uplift, because it's a very lazy, randomly-arranged book. It's divided into chapters, and consists mostly of comments from women from all over the country. It's a very clever marketing ploy, because I'm sure all the contributors ordered books. I went through it in the store and thought a few of the snippets of info would be useful. Like tips on combatting chemo-induced nausea. Suggestions ranged from the very particular: "Morinda noni juice," blueberry muffins, chicken soup, Mexican food, Lorna Doones--to the obvious: crackers, hard candy, ginger ale. Someone also recommended "Chinese tea." I didn't know there was just one kind. I was also interested in reading about women's experiences with their hair falling out from chemo. I want to cut my hair now as a pre-emptive strike, but I'd really regret it if it turned out I was one of those people who *didn't* lose her hair from chemo. One woman talked about having a head-shaving party and inviting 15 women friends. That sounded like a good idea. I'm hoping to find other home-entertaining tips. It is a very corny book. Two chapter titles: Radiation: Soaking Up the Rays; Chemo and Hair: Mane Matters. If this sounds interesting to you, watch this space. I might end up giving the book away.

I've always worried about losing my hair to chemo. Just like I always thought I wouldn't get reconstruction, at least if I lost (is that the right word??) just one breast. (I'm reminded of the line from The Importance of Being Earnest: "Losing one parent is a misfortune; but losing both parents is plain carelessness.") I said even before I was afflicted by it that it seems that breast cancer is invitable, like gray hair and menopause. I swear I said this, way before I read it in Barbara Ehrenreich's essay, Welcome to Cancerland. You can find the essay on the Breast Cancer Action site.

I had a friend, a jokester, who used to open his wallet and ask if you wanted to see his pride and joy. Then he'd pull out a card with a picture of Pride floor wax and Joy dishwashing liquid. For many years my pride and joy has been right there on my head. In junior high I didn't appreciate my hair. It was "frizzy" and needed to be straightened chemically with Curl-Free, and then physically, by a process called "wrapping." The method was passed down by older female friends and relatives, like a folk custom,. You needed long bobby pins and a clean, empty orange juice can with both ends removed. After using shampoo and creme rinse (conditioner had not been invented), you would towel-dry your hair, of course, then comb out a section from the top of your head and wind it around the orange juice can, pinning it with the bobby pins. Then you would take the rest of your hair and wrap it around your head. The "theory"--yes, this process had a theory--was that the larger the roller you used, the straighter your hair would be. The juice can made for a very large roller. But the largest roller of all was your own head. We needed many bobby pins for this. Then after wrapping your head tightly you would sit under your hooded hair dryer and talk on the phone for the two hours it took your hair to dry. This is why we washed our hair only once a week.

I don't talk on the phone much to my friends now. E-mail seems to have replaced both long letters and long phone calls. I'd carpool with my friends, see them before and after school and during lunch, then at night talk to them on the phone. And then write them notes to give them the very next morning.

Somewhere in my 20s, probably when Cher's hair-do changed from curtain-straight to curly, my hair turned from high maintenance to low. Instead of complaining about my hair, I became vain about it. I was proud, though I had no right to be, that curliness and "body" were things that others strove for and that I achieved effortlessly. Strangers would ask me what I ate to get such thick hair. Women grooming themselves in bathrooms have complimented me on my waves and curls. On the other hand, when a college friend of mine brought me to her parents' for Christmas dinner, her very WASPy mother looked at me carefully and said slowly, Your hair scares me. My own mother has threatened, when I'm visiting her, to cut my hair in my sleep. My hair is what hers would look like if it were left to its own devices, which it isn't. Ever. L is always after me to cut it so he can see my face. So he will.