why i blog

I am not an exhibitionist. I thought twice and three times before some of my more personal posts, especially before discussing my mastectomy.

Writing for me has always been therapeutic but that doesn't explain why I chose to expose myself so publicly.

I am doing this, in part, as way to keep friends and loved ones updated, as well as to help them better understand how I'm feeling and what this experience is like.

I am doing this because some apects of cancer treatment are so bizarre that they must be shared.

I am doing this because our culture sometimes treats breast cancer like some kind of terrible secret, which in turn makes having cancer seem slightly shameful. Talking openly about my cancer makes people feel less awkward around me, which is much, much easier for me. I have always believed in acknowledging the elephant at the table and while I respect the decision of others to keep their cancer a secret, it's really not the right choice for me. I guess I was pretty much an open book anyway (to mix my metaphors liberally) and don't see why cancer should change that.

I am also writing because people like Margaret Wente (a columnist with the Globe and Mail, one of Canada's "national" newspapers) really piss me off. In a recent column Ms. Wente scoffed at the idea of a cancer epidemic, talked about the cancer bandwagon and said that, of course there is more breast cancer now because there are more older people. She also dismissed the idea of environmental factors and the need for research into prevention.

I want Ms. Wente and others to know that I'm here, 38 years old, with no breast cancer in my family and very few of the risk factors associated with the disease. I really felt that my lump and subsequent diagnosis with stage 2b breast cancer came from out of nowhere. I didn't chose to hop onto this particular bandwagon, nor did the many other women in my circle (including several diagnosed before the age of 40). I don't know if I would use the word 'epidemic' but I do know that our numbers are growing and feel very strongly that 'why' of this must be further explored.

Finally, I am writing because, after my diagnosis, I found a dearth of stories about younger women with breast cancer and I thought that if I appreciate others' stories, then someone might like to read mine.

That's why I blog.

strange happenings

I love my work and when I'm feeling well, I miss it. It's hard not too feel some sadness and anger at times that life is going on without me (which of course it must).

However, as my friend C., who has been through this, commented the other day, this is a rare time in my life to be an observer, to really notice and think about life - the positive, the difficult and the truly bizarre.

Listed below is a random list of some of the more absurd things I have observed and experienced in the last several weeks:

1. My insurance company requires a letter from my doctor, including my diagnosis before they will reimburse me for my prosthesis (the prosthethis cost $350 and Medicare pays for $180). "Why is this necessary? Who would buy a prosthetic breast just for fun?" I asked what I thought were rhetorical questions. My spouse replied that it takes all kinds and that you never know what could turn up with a Google search. I don't dare try this.
   
   
2. My anatomy was recently enhanced with a 'portacath', a disk with some tubes attached that are connected directly to a vein that goes to my heart. It was inserted beneath the skin, a couple of inches under my collar bone, on my left side. It makes chemo infinitely easier, as I can now use my arms during the hours I am receiving treatment and no longer experience the burning sensation that I did when chemo was infused into a vein in my arm. Chemo also hardens and shrinks the veins, so the portacath is saving me the trauma of being poked repeatedly as the nurses try to find a vein in my arm. My portacath is a really nifty thing but I do feel that I more closely related to the 'Borg' from Star Trek than I used to be.
   
   
3. Acupuncture is supposed to help with nausea, so I thought I would try it out. I've been seeing a doctor of traditional Chinese medicine who has considerable experience working with cancer patients. He also has a considerable number of eccentricities. For example, the first time I saw him, he greeted me warmly, then handed me a piece of paper stating that, suspecting that someone was spying on him, he'd had a private security company in and they'd found listening devices all over his clinic (I have no idea if he is delusional or if this is true). Since that day, he asks that all his patients communicate with him in writing only -even while we are being treated. When he does talk, the doctor communicates chiefly in song titles: "You are always on my mind," and "I'll be waiting for you."
   
   
4. At my last appointment, my very cool oncologist suggested that smoking dope would be the best thing to alleviate nausea and other side effects from chemo. My mother-in-law responded by couriering me a pot cookie.
   
   
5. I took part in Look Good Feel Better, a free session put on by the cosmetics industry. The idea is that women in treatment will feel better if they can be shown a few tricks to look more like themselves. And you get lots of free stuff (I love getting free stuff). I thought it would be a lift, a bit of light-hearted fun (and so what if I left wearing more makeup than I usually apply in a month). However, the 'team leader' for my session was a martinet, barking out orders like we were in boot camp ('Apply mascara now!' 'Left hand on left eye! Right hand on right eye!'). I spent the whole session frantically trying to catch up (and giggling madly). When the martinet informed us that it was time for 'a moment of silence to remember the fallen', I stopped laughing. I doubt there was a participant in that room who needed to be reminded of the 'fallen.' Or who hasn't had many moments of silence filled with the fear we might join them.

joy

I am fundamentally a 'glass is half full' sort of person.

It's not that I am always in a good mood (those closest to me would be sure to tell you otherwise). In fact, I have struggled with depression since my teens, and need to work hard at staying healthy. It's just that if there are two ways to look at a situation, I naturally gravitate to the most positive interpretation.

That's why I can say that during these months of chemotherapy, I feel well half the time.

A clear physical and emotional cycle has emerged after three rounds of chemo. The first couple of days afterwards I feel light-headed and queasy. By the week end (every chemo is on Thursday), I go into the 'trough', which lasts for several days. I feel pretty awful during this period but the symptoms are better managed than during the first round. By early the next week, I emerge from the worst but go into an emotional funk (last week I spent several days exhausted and furious at how different my life is right now from what I expected it would be).

Then I turn the corner.

I went for a walk last Saturday, bubbling over with everything that is good with the world. The sunshine. My beautiful children. My dogs. My eyebrows (thinner, but still there).

I seem to get a week and half of feeling better (the effects of chemo are cumulative, so I know that this period could get shorter, but I know it will come), during which time I am positively euphoric.

I love my family. My neighbourhood. I have the best friends in the world. I am getting the best of medical care. I am happy. The fact that I can't find anything in my cluttered mess of my house only bothers me a tiny bit.

Chemotherapy is very hard and I really, really hate it. I am however, very grateful for this opportunity to experience joy, and to be reminded that, really, I have a very good life.

boob in a box

I went to into my room to get dressed yesterday morning and found my new prosthetic breast sitting on top of its box.

My boys had been playing 'Pirate Treasure Hunt' (although I think it was really an excuse for soon-to-be-eight years old S. to look for hidden birthday presents) and I gather the box on my shelf had been too much for two curious boys to resist.

I immediately went to tell my spouse. Should I talk to S. about his find? Did I think it would be more traumatic if I talked to him or should I just let it go? My husband, who had his hands full baking a cake for my three-year-old's birthday, said in so many words that he didn't think it was a big deal and that, while I could talk to him about it, I really didn't need to worry.

So I decided to wait for the right moment. A couple of hours later, I had the following conversation with my older son:

"Did you take something of mine out of that box on my shelf this morning?"

"Yeah. It was a white, squishy thing. What was that?"

"Um. Well...You know when I had my surgery...it left me flat on one side. This is to make me look the same on both sides."

"Cool!"

Pause.

"So it makes you look normal."

"Yeah."

"Cool."

End of conversation. Kids really do take most things in stride.

My prosthethis has provided a real lift to the spirits, is comfortable to wear and makes my clothes fit better. It is really bizarre, though, thinking that I will be putting my breast away in its box every night and taking it out again every morning.

chemotherapy (part 3 - the grim aftermath)

Two down, four to go.

Feeling a little "off" after this morning's chemo but OK.

Anxious, though, because last time I was fine for the first 24 hours and then...became very sick.

I spent the week end curled up in the fetal position, in agony, unable to deal with sound, light, movement (I read an interview with Melissa Ethridge yesterday, in which she described living through the exact same experience after chemo. I'm in good company). On the Saturday afternoon, I had the home care nurse come and give me an injection of an anti-nauseant which helped me keep the oral medicine down.

As for eating, once I could keep food down, chicken soup and soda crackers were the only item on my menu. That's tonight's dinner.

Once the nausea subsided (the following Tuesday), I started to experience the bone pain associated with the injection I get to keep my blood cells up (at $3,000 dollars an injection, which I'll get each round of chemo), an unbelievable case of the jitters and restlessness (like I'd had three pots of coffee injected directly into my bloodstream) and a weird twitch in my hands (couldn't knit or type). Turns out that was a side-effect of the anti-nauseant.

We've tinkered with my drug regimen slightly this round and I'm going to acupuncture tomorrow. Hopefully that will help. This is all so surreal. I still can't quite believe I'm this person with cancer and seven different prescriptions to take at bedtime.

On the other hand, when the fog lifts and the nausea subsides I feel joyous (I have a friend who is going through this at the same time I am and she describes this feeling as euphoria). I feel so damn grateful not to be sick that everything seems wonderful. I have grabbed onto those days and carry them with me because I know they'll come again.

I've been listening to a lot of music lately. The album of choice today is Casino by Blue Rodeo, in particular the tracks "Till I am Myself Again," and "What am I Doing Here?"

Not very subtle, I know.

chemotherapy (part 2)

This is what it was like to get chemotherapy:

1. The Vampires
They're actually three attractive nurses but the women who work in pharmacology were introduced to me as the vampires, and as such I will always think of them. This is where I had blood drawn and ended up performing a duet of Patricia the Stripper (Chris DeBurgh, circa my misspent youth), to which, I was astonished to realize, I remember all the words.

2.The Chemo Room
This is a large room with a nursing station at the centre. At a guess, there are at least thirty of us receiving chemo along the room's perimeter, at any given time.

Before, we begin the infusion, an oncology nurse goes over my extremely complicated post-chemo drug regimen. I have seven different prescriptions to be taken at varying intervals over the next several days.

3.Red Devil
The first chemo drug is nicknamed this way by the oncology nurses because it's bright red, it burns, it's the one that guarantees hair loss and - you excrete bright red after it's infused. The red devil takes 15 minutes to do its work.

4.Icy Fingers
After an hour's break, during which I receive saline, it's time for the Taxotere, famous for the fact that it can make your fingernails turn black and fall out. In an attempt to prevent this, patients are encouraged to spend the hour and fifteen minutes of treatment with their gloved hands in ice (I am reminded of my college Economics prof, "A statistician is someone who has his head in the oven and his feet in a bucket of ice and says, on average, he's comfortable.")

5. The Closer
The last drug is a walk in the park, because I can move my arm, and, thus, read. It takes about half an hour and then, after my "vitals" are taken, I am free to wobble off home. All told, I have been at the hospital for nearly 6 hours.

My spouse has observed how surreal it is that an experience can be simultaneously so intense, yet so unbelievably boring. Thank god we brought music. Greg Brown, Jesse Winchester, Johnny Cash and the incredible Melissa Ethridge got me through it, along with the aforementioned very patient spouse.

chemotherapy

Today I learned that if I throw up on my clothes in the first forty-eight hours after receiving chemotherapy, I am to put them in a plastic bag and bring them to the cancer centre, where they will burn them.

I am not making that up.

Chemotherapy is very scary stuff.

On March 9 and every third Thursday thereafter, I will spend at least three hours in the chemotherapy room, being infused with a toxic cocktail. Then, after a break of a couple of weeks, I will be radiated every Monday to Friday for five weeks.

Being a cancer patient is a full-time job.

I had a fitness test done at the gym at the cancer centre yesterday (every cancer patient gets a free life-time membership). I am in excellent shape, despite my post-surgery inactivity. This made me feel very good.