Friday, July 31, 2009

Nuke that armpit

Just finished radiation treatment number 4 (of 25). It’s going much more smoothly than I remember it going five years ago. I’m in and out in 15 minutes; so far no waiting. Last time I recall a lot of difficulty positioning me on the table, perhaps because they were doing a different part of my body, my breast. Because of my stiff spine, I believe the technicians had trouble aiming the radiation beam at my breast from the side without catching my underarm. As it was, they did manage to fry a little of the surface of my armpit (hence the current lack of hair follicles and sweat glands there). Considering that now the problem is in my underarm, maybe it would have been just as well if they had fried it. Anyway, maybe doing the armpit is easier, because so far the treatments are as simple as ordering a cup of tea. It is a little uncomfortable having to hold still in one position with my head tilted up, but it’s not for more than about 7 minutes. Meanwhile, I visualize a beam of pink energy zapping cancer cells and shredding them to atoms. A lot of good that did me five years ago, but I guess it beats lying there and thinking about the garbage strike or Iran or my dad’s health.

The people who give me the treatments are very cheerful young men and women, with the emphasis on young. They look like they just had their high school proms last week. I know I’m being bombarded with green laser-like beams that make the whole room look like Star Trek – I know because last time around a friend came into the treatment room with me and convinced me that the setup was bizarre-looking enough to warrant taking photos. Eager to do anything that would make us laugh, I agreed, and I have a whole roll of pictures taken with a LOMO camera of my half-naked body crisscrossed with green lines. Later one of my brothers took some photos, too; I apologized in case he felt embarrassed seeing my surgery-ravaged body. “I’ve seen worse scars on some strippers,” he said encouragingly.

I have promised myself that I will not pay a visit to a hospital without a load of magazines to place in waiting rooms, with a view to ridding my house of the stacks and stacks of them I’ve hung on to for years. Twenty-five trips to Princess Margaret should make a small dent.

Off to Kitchener to see my dad in his new home and then go to Stratford with Mom to see Cyrano de Bergerac and West Side Story. The shoulder blade pain has now spread to my breast, which aches terribly. Perhaps it’s wishful thinking, but I think I’m a little less out of breath this week, though I have dizzy spells whenever I lie down.

Saturday, July 25, 2009

Alberta holiday

Nearing the end of my Alberta vacation, I am finally catching up with the blog. There have been many Pollyanna moments; the weather is scorching, but it's pretty dry, so I can manage. It always amazes me that I can put a sopping wet T-shirt on the clothesline in Red Deer and see it dry in an hour, quite unlike in muggy Toronto.

In Edmonton, I stayed with Helen and Mitch, and the highlight, as always, was our lame attempt at singing old Dylan songs and other 60s classics with Mitch on guitar. We probably sounded like three drunken cats, but it was great fun. And while I was there I purchased and finished reading The Book of Negroes by Lawrence Hill. We also went shopping on Whyte Ave.; though I'm not a big shopper anymore, I've found that months of being mostly cooped up in the house has left me aching to browse and put down a few dollars.

Next I took a bus to Calgary and went to stay with Joan and Paul and their now-grownup kids in the foothills near Bragg Creek. They live in such a relaxing and beautiful spot amid huge conifers and a short walk (which we took several times) from the shallow, rushing Elbow River and its stony shores. While there I celebrated my 52nd birthday; it was a clear, hot day, and Joan and Paul drove me up to Banff, where I had lunch with Moira at the Banff Centre while they hiked. Then, as my birthday gift, we had a short canoe ride on the Bow River, me sitting in the middle like the Queen of the Nile (if the Queen of the Nile wore a fluorescent orange life preserver and a Tilley hat). The contrast between the hot sun and the glacial water was true Alberta. Afterward we had dinner in Canmore, at a restaurant I would recommend, the Rocky Mountain Flatbread Company.

Now I'm in Red Deer with Matt and Keith, where I indulged my shopping bug some more by buying, get this, a Tilley Endurables blouse, and a new Derek Alexander handbag (I am so not a labels person, but I am trying to fit in with the modern ethos -- I am of the generation of working-class girls who would never have thought to mention "who" I'm wearing because it was the "what" and the "where did you get it" that mattered, and I admit I sometimes laugh at my young friends who are so focused on designer names). Last night we waded in Sylvan Lake and ate Big Moo ice cream, and I've had some nice walks near the Red Deer River.

This weekend the children's theatre group of which Matt is artistic director, Treehouse Youth Theatre, has several performances as part of Red Deer's CentreFest street performers festival, so he's busy with that, and I'll head down there today or tomorrow. Other than that I've been playing Boggle and Scrabble and exercising my thoracic duct (laughing) by reading David Sedaris books. And I had a brief visit with an aunt of mine who is languishing, but physically healthy, in a long-term-care facility here in Red Deer -- she has frontal-lobe dementia, can't speak and knows no one. I think she's 71. But when I sang to her -- "Heart of My Heart" and "You Are My Sunshine" -- her eyes got big, she looked me straight in the eye, and she laughed heartily. It was a difficult visit, because I had just got news that my father, her older brother, who has a different form of dementia, is going into long-term care on Monday. He's only 74.

As for my health: the day before I left for Alberta I started having tremendous shoulder blade pain, which I think was stirred up by the lymphatic drainage massage, and I've been living on Tylenol 3s since I got here, sleeping poorly and unable to sit for long periods. Pretty miserable on that score. But I haven't had to take a T3 for the past 24 hours, and the discomfort is settling down to a dull roar, thank goodness. Meanwhile, I can walk pretty well on a flat surface, but the least little hill has me huffing and puffing like a steam train. Is it just being wildly out of shape, or has my heart been damaged by the chemo?

At least I can now taste my food.

Wednesday, July 15, 2009

Between treatments

Feeling a little crappy today, although my mouth is no longer on fire and my tastebuds are starting to recover. Yesterday I had a lymphatic drainage massage, and my shoulder blade pain went away for a while, but towards evening it started to hurt more than ever and I had to take Tylenol 3s to sleep, which I've never had to do before.

Tomorrow I'm flying to Alberta to visit friends -- and in theory to escape Toronto humidity, but the biggest Pollyanna moments this month so far have been enjoying the un-Toronto-like weather: it continues to be cool and breezy and dry, with lots of warm sunshine. My house (which doesn't have central air but does have good cross-ventilation) is actually chilly at times. I have to laugh at all these weather reporters apologizing for the fact that we're not having hot summer weather -- if it were like this all summer, I'd be a happy camper.

It's a little odd being between treatments. I've linked before to the blog of Dana Jennings, the New York Times writer who has prostate cancer; recently he wrote (here; thanks, Donna) about how scary it can be when you're not having treatment. The lack of attention can make you feel like you're now at the whim of fate, instead of being "fixed."

But I start radiation the day after I return from Alberta: I'll be going in to be zapped every weekday from July 28 to September 1. I've been through it before, so I know what to expect, but this time it's a different part of me (my armpit rather than my breast), and we'll see what havoc the treatment wreaks with my lymphatic system. My recollection of the effects last time involve increasing fatigue as the weeks wore on, and then a couple of weeks lying on the couch holding a saltwater compress to my burned flesh. It was uncomfortable.

Wednesday, July 08, 2009

The body electric: Michael Jackson

It's been a week since my final chemo treatment. My mouth is especially irritated, and I'll be glad when that clears up so I can enjoy food again. Perversely, I've been living on junk, looking for powerful flavours my mouth will respond to. That has to stop. Otherwise, I don't feel too bad -- a little tired, but not as shaky as I was a few days ago. Still coughing up a storm. Walked to the grocery store today. Blah, blah.

Yesterday I had a shot of Zometa, the bone-strengthening drug, at the hospital (it might make me feel crappy today), and had some blood tests while I was there. My white-blood-cell count was extremely low despite having had three of five Neupogen shots. I asked the doc whether I should have my blood tested again next week, but she didn't seem concerned. I also mentioned that my heart rate is a bit high (98) and one of the nurses suggested maybe I should have my heart tested again since I've had the heart-harming chemo, but again the doctor seemed uninterested. When I walk fast, my lungs seem to be able to handle it, but I'm still tired and out of breath -- is that my heart?

More interesting than the workings of my boring body: I spent yesterday afternoon watching the Michael Jackson memorial -- what a mass of contradictions and ironies. If I were 20 right now, I would probably have been one of the crying girls, with little control of my emotions despite a fascination with the cultural meaning of celebrity death (I was a mess when John Lennon died in 1980); if I were 45, I would probably be cynically decrying the tastelessness and the media-manipulated celebrity maw and wondering what the need for global mass mourning says about our age and why we're glorifying a very troubled man who didn't call himself "Bad" and "Dangerous" for nothing.

But at this stage in my life, I simply look at all the weeping kids who weren't even born when Thriller came out and the mothers and fathers who travelled to L.A. from afar and I acknowledge that there is so much sadness and pain in the world and such a lack of community that the need to join hands with others when a celebrity dies, metaphorically and in reality, seems understandable, if alarming. It's a tough world out there, and we need socially sanctioned outlets for the grief that we walk with every day. And we need to touch each other and participate in ceremony and seek good in the dark corners of the world. Still, you'd be hard-pressed to name an event that contained within it so much good and dark at once.

The memorial seemed respectful and subdued in some ways; I would love a funeral that combined speeches with musical performances, and I liked that a lot of the music was devotional. I don't have a problem with people commanding a stage at a memorial service, though Usher's self-regard was hard to stomach, with his sunglasses and his "it's all about me" attitude. John Mayer's guitar instrumental on "Human Nature" was a nice idea in theory -- I don't think I could have stood his singing, and the man who did sing the melody line in the background sounded wonderful -- but Mayer didn't seem like much of a guitarist (I don't know his work at all). I admit my eyes got a little damp when Mariah Carey opened with "I'll Be There," though I've never listened to a Mariah Carey performance in my life. Jermaine Jackson singing "Smile" struck a perfect note for a funeral, notwithstanding the image it invoked of its composer, Charlie Chaplin, an earlier social outcast for his supposedly inappropriate romantic choices.

I thought Martin Luther King III's speech was inane -- it's all well and good to go on and on about how his father maintained that we little people should be the best street sweepers and mechanics we can be, but what did that have to do with Michael Jackson? He truly was better at what he did than just about anybody in the world. Was King simply trying to make us feel better about the fact that we aren't as good as Michael was? Weird.

The speech I liked best was Brooke Shields'; because I was featured in a documentary called Fag Hags: Women Who Love Gay Men (hey, I just discovered that the whole thing can be viewed online here), I instantly empathized with the lament of a classic fruit fly who has lost her special friend. That I could relate to.

The ending was moving; was the weeping 11-year-old daughter Paris being used by the family to humanize her bizarre father? Perhaps. But it did the trick. I guess I could have done without it; still, I felt bereft when they took the gold-plated, rose-covered casket out of the building to the subdued instrumental strains of "Man in the Mirror," a song that has always choked me up a little. I wanted to hear Michael sing, but it was entirely appropriate that instead the camera focused on the lonely microphone stand in the empty spotlight. At that point, I didn't mind being manipulated at all.

I tried to purchase an MJ song on iTunes during the "show" to complete my playlist, and the system was jammed. But I completed the transaction an hour later. Life goes on.

Wednesday, July 01, 2009

Frequent flyer

I had my last chemo treatment yesterday, but I didn't leave the Medical Daycare department with the fanfare with which I made my departure after chemo five years ago (hugs all around, cards and homemade cookies for the nurses). At that time, I guess I made myself believe I wouldn't be back there for a long time, and I did get five years. Mind you, I've been there to see my oncologist every six months, but at least I was able to avoid the chemo room.

But this time, it's different. For one thing, I'll be back there next week for a monthly injection of Zometa, the bone-strengthening drug (I had it a couple of months ago, and they forgot to keep giving it to me). For another, let me quote my favourite Medical Daycare nurse, Marlene, a somewhat sardonic and tough character with a marshmallow heart. Now that I'm a chronic breast cancer sufferer, I enjoy her probably long-practised lines that don't deny the reality I'm living with but put a distancing spin on it. When I asked if I would be getting my Porta-Cath removed soon, Marlene said, "You'll have to ask the doctor, but probably not. You're a frequent flyer now." In other words, I'll most likely be back and may need more chemo, and removing the Porta-Cath is complicated. Then another sweetheart of a nurse, Dorothy, told me of a man, a doctor, who had lymphoma and after his chemo refused to have the Porta-Cath removed because he was superstitious that the instant it was gone, the cancer would return. He ended up keeping it for five years (it has to be flushed every month, but otherwise isn't much trouble except cosmetically) until he finally decided to believe in his good fortune.

Dr. Lee wants to at least wait until I've had my radiation treatment and then a CT scan and bone scan (and I guess Dr. Second's MRI will tell us something, too) before deciding what's up and whether to remove the Porta-Cath. So I guess September/October will be the big reveal.

Meanwhile, my back is troubling me. Despite resuming my full dose of Naproxen four days ago, the left shoulder-blade pain is still pretty bad. I can walk fairly well (had a great half-hour power walk this morning, and, because I'm on steroids and it's cool outside, did not feel wasted at the end), but it hurts like hell when I lie down or sit. This is quite different from previous pain; the other different thing is that -- fortunately, or perhaps unfortunately -- it responds to Tylenol 3. I'm trying to avoid taking it, but it makes me feel great, so it's hard to resist. This morning the news is all about government efforts to lower the recommended dosage of acetaminophen, since people are overdosing on it all over (Globe and Mail story here), but I think I'm taking much, much less than the daily limit I heard one doctor say was preferable (2,600 mg as opposed to the current limit of 4,000). Anyway, I have some pure codeine pills without acetaminophen, so I can try those. And hope not to turn into a drooling codeine addict.

By Friday I will probably be feeling weak and tired, not to mention tingly (it's dawned on me that that happens not just because it takes a few days for the chemo to kick in, but because I'll have stopped taking the three-day cycle of steroids), but my mom is coming to visit so I can pretend to be a kid this weekend. Poor Mom. I was again diligent about keeping my fingertips covered in ice chips during yesterday's injection; doing that last time meant I didn't have any soreness in my fingertips at all. On the first round of Docetaxel, we didn't do the ice thing soon enough or correctly, and for two weeks it felt like someone had whacked each of my fingertips with a hammer. For some reason, though I haven't stuck my toes in ice, they seem to be fine.

Pollyanna moments:
  • My hair is starting to grow back!
  • I've booked a trip to Alberta at the end of the month to visit friends and rest in the non-humid climate before I begin my daily radiation treatments on July 28. And I've booked a two-day trip to Stratford with Mom and some friends to see Cyrano de Bergerac and West Side Story and stay in a nice B&B.
  • Happy Canada Day!