Nippity Nip Nip Nip

I'm going to ask for really hard nipples. Some people are grossed out by "high beams," but I love pokies. One dark secret of mine: I used to own this contraption that created pokies for as long as you wanted. It was a little suction bulb, and three pairs of different sizes of rings came with the bulb. You slipped a little rubber ring onto the end of the bulb, stuck your nipple into the bulb, gave the bulb a squeeze (it looked much like those blue snot suckers you use on infants), and as your nip was sucked into the bulb, you slipped the ring onto it. Well, here see for yourself: Nipple Enhancers. Yeah, anyway...so now I can throw my nipple suction bulb away! Wahoo!

My pathology report came back very positive. I had 8 lymph nodes taken out, one of which was positive for carcinoma, but the rest were negative. So it looks like the cancer is history! But there still could be microscopic carcinoma in the chest wall, so I'll have scans every 6 months for the next five years to make sure everything is as it should be. I'll also go through genetic screening this summer for the BRCA-1 and -2 genetic mutation that could be the cancer culprit, in which case I would also be screened for ovarian cancer.

My body is healing quite well. I'm still getting lymphatic massage treatments, acupuncture, and today I had reflexology, which was soooo awesome. I could actually feel lymph fluid draining when the therapist pushed on a certain part of my foot. It was creepy yet cool. I got my Bellisse compression bra, and that's been helping loads too. I just wish someone around here would become a distributor for it, because I think so many women would benefit from having this special bra. I'm going to use my magical powers to make it happen, just wait and see.

Tomorrow I have another follow-up appointment with the plastic surgeon. The first question on my mind is when can I start getting tattooed? I want to get cherry blossoms on the formerly cancerous boob instead of your normal areola (and also still get a really hard nipple), and just have a nice pink areola and nip on the other boob; and also some cherry blossoms and branches where my abdominal scar is running from hip to hip. Now would be a great time since I have zero feeling in those areas, but I suppose I have to take into consideration the fact that the tissue is still healing.

My friend Jeff Chiba Stearns is a filmmaker and animator, and he has an animated character called Super Nip, but I think I might have to talk to Jeff...because a new Super Nip(s) is coming to town!

Today

"Listen to your body." How many times have I heard that during the past nine months? Enough to make it mildly annoying. Yet I've come to understand the truth in that advice during the past few weeks.

It's been three weeks and two days since my operation (not that I'm counting). During this time, everyone who supposedly knows better has told me to keep it easy, move with caution, be gentle, put paper tape over my scars, and don't exercise. In the meantime, fluid has built up under my arm and along my side and even on my back near my shoulder blade. I've done gentle stretching and mild weight lifting (five-pound dumbbells), and while it has helped, I'm terribly impatient and frustrated. So today, I said screw it, and I hit the gym. Before I took off, DH wrapped my arm up from my wrist to my shoulder, with the pressure starting at the wrist and tapering off as it went up my arm. My lymphatic massage therapist told me to wrap it like that when I wanted to exercise. Tomorrow, I'm going to get fitted for a special compression sleeve, but for today, this would do.

At Fitness World, I worked out on the elliptical machine for 30 minutes, did a wee tiny bit of resistance training, and then stretched. It felt soooo good to sweat from my head, neck, chest, arms, have the sweat running in my eyes, nose, and mouth. It felt incredible to get my heart rate up and keep moving. My abdominal stitches did burn a little in certain spots, and when that happened, I slowed down or changed direction of the machine. But I kept working. Then I walked home--and it's about 2 miles from my house to the gym--and then I lifted some more weights and stretched. When I took a hot shower, I felt awesome. I listened to my body, and my body said thank you.

Other ways I listened to my body--my body does not like paper tape, which as I mentioned, I was told to put over my scars/incisions. It actually irritated the scars and the skin surrounding them. Instead, I slather on pure shea butter, kinda like how you'd spackle cracks in the wall, and it's been working like a charm. I almost have flesh that looks like boobs!

I also ordered a compression bra, at the suggestion of my lymphatic massage therapist. It's from a company called Bellisse, and I had to order it through this medical supply store in Winnipeg! I called the woman with my measurements, so I should be getting it sometime next week.

Other fun things I did today: I created some postcards using my new mega-pack of Sharpie markers of all colours that I bought from Costco yesterday; then I wrote postcard stories, which I will send off to some lucky recipients on Postcrossing.com. Check out my postcard stories blog for the awesome results!

And I took some pictures with the new camera!

Here are some pretty plants outside a house I was stalking.




More stalking--uh, I mean, pretty plants.




What? A rain cloud in Vancouver?! No way!




My old friend, Mr. Kitty Kat. You can tell he's thrilled to see me again.



Also, on the walk back from the gym today, as I was crossing Main St., I saw this guy that looked so unreal. I mean, I could probably make this guy up, but if I did, I know someone in some writing workshop would tell me, "That's totally fake and cliché" (at least, that's what I would say). This dude was wearing a black tee-shirt, black leather jacket, black jeans, black sunglasses, had a black handlebar moustache, and was carrying a black briefcase. I wanted to take a picture of him, just so no one (including myself) thought I was bullshitting or hallucinating, but obviously he was in a hurry, on his way to blow up some shit or murder someone, so I didn't want to disturb him.

Yeah. So anyway, for those of you who think that because I have this renewed/new-found energy and vivacity, that I might get to that thing I had promised you I'd get to one month/three months/six months/nine months ago, or even during the time before I knew I had cancer...please, just for the next little while, pretend I'm still a bedridden invalid who's incapable of feeding herself or going to the bathroom without the aid of a laxative. Thanks.

I'm so glad I had this wonderful day, and I'm prepared to get my pathology report tomorrow.

Therapy of another kind

I'm still waiting for the breast cancer surgeon to call me about the pathology report, but I'm not rushing to get the results. I guess some people might, but after having gone through ten months of treatment and surgery, I'm in no hurry to find out if I have more cancer floating around or not. But I will do the responsible thing and call her office this week, I suppose.

In the meantime, I'm doing a bit of retail therapy. Office Depot had a deal on cameras today, and seeing how I busted the LCD screen on my camera a couple months ago, we felt justified in buying a new camera--or two (matching His & Hers)--today. I got a green Casio Exilim, and Dude got a blue one. It's got this weird feature, "Face Recognition," where you can take pictures of your favourite people, and the camera stores the facial features, I guess. Then later, when you take a group shot, you can turn on the "favourites" feature, and the camera will focus more on those people whose faces it recognizes. Creepy--and cool.

So I decided to take pictures of some recent acquisitions to test out the camera.

This is a quilt that my friend Pisey made and sent me. I've known Pisey since the first grade, when she came up to me because I was "Oriental" like her. Look at the beautiful colours and designs!




A few days before my mastectomy, I wandered into a store called Rice Terraces, where they have really cool vintage kimono products and other neat stuff from Japan. So here's some stuff I bought...

This is a small tote bag featuring a "modern Geisha," as the store owner described it. Funky Cold Medina (that's a late-80s reference, for those of you who are too young to have a clue as to what I'm talking about).



This is a cute little kimono handbag with this awesome off-centre handle, along with a ring that I also bought. The ring is also made out of kimono cloth, with resin over it. The bag was a steal at $25, and the ring cost me $14. The surrounding plants were given to me by my pals, author Wayson Choy (he gave me the "Tree of Life" on the left), Harley Wylie (the small pink flowered plant in the middle), and Emilie Allen (the very sunshiny plant on the right).



Here's another shot of the bag and the ring.



The ring and my gnarly hand.




Yay for retail therapy and pretty things!

PS: Pop on over to my other blog for the much-requested video release of "Robot Refrigerator" by M.Y.L.O.

A Simple Post, RE: Good Times

I was downloading and editing pictures this morning, and I came across all these wonderful ones from a dinner party our friends had for us before my surgery. Chloe and Mylo were psyched to get dressed up in fancy clothes and see their little friends. It was in a private room, so the kids could run around and go wild.

Here are the two little rascals before leaving for dinner.


Totally a daddy's girl, eh?


Mylo doing his usual calisthenics before eating--his secret to maintaining his buff physique. What a show-off! Wonder where he gets that trait from...


Our friends' little guy.


All the kids playing something or other before eating.


Even the littlest dude enjoys getting in on the food action!


Mr. Mylo


Ms. Chloe. Um, yeah, even princesses get runny noses...


...and princesses like to lick their runny noses...


...and shove food in their maws.



I think that last picture sums it up. We had a great time with great friends.

Flow

I went for lymphatic massage today, and the physiotherapy coordinator finally called me to confirm my spot in the post-op support group next week. Despite the way things seem to be looking up, I find myself in a funk. I suppose it's understandable to become philosophically morose (or morosely philosophical, whichever makes more sense to you) during times like these, to be down about being numb--emotionally and physically. When I was having the massage done today, I felt particularly numb when the therapist worked on my breasts, and other than feeling light pressure, there was no sensation whatsoever. She could have put a flame to my flesh, and I wouldn't have known the difference. I've been reassured by nurses and doctors that this is only temporary, that I will regain some feeling back in my body. But they can't guarantee that.

It makes me think that the body is so needy for touch (think of babies, for whom touch is the only true form of affection), and at the same time, the body itself really doesn't matter at all. I have almost forgotten what my old body looked like--the size of my nipples, the way my breasts drooped, the way they felt. I don't have phantom limb syndrome that people sometimes get when they lose a part of themselves. I'm glad--I think it would hurt to the core to ache like that.

During my second follow-up appointment today, I asked the nurse when I would have nipple reconstruction. She laughed and said I'm too eager. Well, who wouldn't be? I don't exactly enjoy looking like a FrankenBarbie doll. But yeah, I have to wait until the new boobs "settle" first, which is hard for me to imagine right now. I just feel like they're two stiff mounds that are hardly a part of me.

I'm grateful for all the comments about how strong I've been through this ordeal, but my typical reaction is that anyone would do it if they had to--to go through all this to live. Well, most people would, I assume. But tonight, I had a moment, reflecting on what I and my loved ones have been through since July 2007, and I'm like, "Fucking hell yeah, I've been through it all. My body's been through the ringer, and it's sucked ass." But I'm healing. And waiting to be felt again.

Advocacy

I'm trying to reclaim my bionic body. It's hard. And it's surprising and frustrating that there's not all that much support out there. It's been difficult trying to register for this post-op mastectomy physiotherapy group that this city claims to have at various health clinics. Yesterday, I went to one that not only claimed was held on the 4th Monday of every month, but also specifically listed "April 28th" as the date--to be told that I was completely wrong, and the woman who runs the group even called me this morning to apologize, but still made me feel like I was in the wrong. Then I tried to register for another group that's being held at another clinic next Wednesday morning, only to be shunted off to someone's voicemail--twice--with no return call confirming my registration.

I'm currently reading Living in the Postmastectomy Body, which has been helpful in learning some exercises to help me deal with the lymphedema. In the book, the author says that even though all the oncologists and surgeons always tell breast cancer surgery patients that they might experience lymphedema, that pretty much all breast cancer patients who've had any lymph nodes removed will experience this condition. This makes me feel that doctors should spend more time talking with their patients about this so that they can expect it and know beforehand what to do when it happens. It's really true that if one hasn't had this surgery, one really doesn't know what kind of discomfort and pain is on the way. It's almost as if medical professionals are there to just do their job--which is to treat the cancer--and then leave the patient to herself afterwards to deal with what might happen.

I also found some information for post-op exercises at the Patient Guide to Breast Care. So I was able to print these out and follow them. Two more resources that I found are Alicethenics, which is a very gentle exercise program (with very low production quality--but anyway, whatever), and Pilates Therapeutics Breast Cancer Survivor's Guide to Physical Restoration, which I haven't received yet but ordered yesterday. I'm excited to get this DVD because my focus now is to just get movement back. I list these resources because there might be some of you out there who are in search of this information, which I know now from experience is so hard to come by.

I also had my first acupuncture appointment today since surgery. It made me feel relaxed, and I even fell asleep for a moment, only to wake myself up with some weird gurgling I was making. I'm sure the other two women in the room who were receiving acupuncture were amused.

One last thing--I was at a friend's son's birthday party the other day, and she works at the cancer agency. One of her co-workers was telling me that she received a call from some man in Abbottsford who was expressing anger that the cancer agency's literature is available in Punjabi and Chinese (in fact, Dude was instrumental in having the literature available in these languages when he volunteered with the cancer agency 20 years ago!)--basically, this man in Abbottsford was saying that it should only be available in English, and that if you have cancer and don't know English, then you should learn it! What kind of racist, small-minded people are out there? And I was telling her that in fact, I think more should be done to help cancer patients who aren't fluent in English because in my experience in going for chemo, I've seen more people struggling with their treatments because they weren't able to communicate their reactions to the nurses. The cancer agency needs more people who speak different languages to be able to help anyone who needs help, period.

So I guess what I'm saying is that even in a place like Vancouver where we have top-notch facilitates for cancer patients, there's room for improvement--which is also saying that overall, more needs to be look at in terms of a patient-centered model for treatment, rather than just merely attacking the illness. Because even in the best-case scenario where the cancer is defeated, there's still a human being left to pick up the pieces.

Robot Refrigerator

Mylo's been going around saying "Ro-bot Re-frig-er-a-tor" for a while now, in this mechanical monotone. It makes me laugh. I really feel like a robot refrigerator right now (whatever that is). It's like there's a cutting board in my torso, and my right arm and side are swollen. It's like I have a padded bra on, but I don't. It's just me.

I went to the physio group this morning, only to be told that the information that they gave me is incorrect, and the physio group was last Tuesday, and the next one is at the end of May. I was pretty pissed and annoyed. I wanted to learn some exercises to help me with my discomfort and get the range of motion back in my right arm. But it's not to be. I ordered a DVD that will hopefully help me, so I just have to wait for that.

I also was supposed to get my stitches out tomorrow, but when I called my surgeon's nurse to report this swelling in my arm, I was told that my appointment for tomorrow had been cancelled, there had been some mix-up, and that I'd see the nurse on Wednesday morning instead. If I hadn't called them, I would've wasted my time going there tomorrow.

These things always happen to me like this. Like, one bad thing doesn't happen--it's usually two or three things. I guess it's not so bad, just pretty annoying. Hopefully, my week will end up better than it started. I should be hearing from the breast cancer surgeon soon regarding the pathology report, so we can know if the cancer is gone or what. Until then, I'm not moving much.