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 15, 2009
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.
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:
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!
Thursday, June 25, 2009
Blog to blog
I don't follow many other breast cancer blogs, partly because they scare me. When the writer fails to post for a long period, one assumes she's died, or dying. Of course, it's possible that she's not posting because life is going swimmingly well, but I hate wondering. If and when the disease silences me, I hope I'll have time to tell someone else how to gracefully end this blog.
Occasionally I stumble on breast cancer blogs when I summon the courage to Google aspects of my illness, and I was glad I did this morning. Sort of. I came across this blog by Trisha Ekstrom (not updated for some months, alas) when I Googled "numbness" and "breast surgery," and found this passage:
Trisha Ekstrom was part of The Scar Project, which I also discovered for the first time through her blog: a series of photos of partially naked women with breasts missing, breasts reconstructed, nipples missing, scars in full or partial view. They're beyond striking, often disturbing, sometimes erotic and sultry, always brave and beautiful (don't click on the link if this sort of thing is too much for you), and they made me feel stronger and less fearful, to my surprise.
Through Sitemeter, I can sometimes get a faint picture of those who find my blog when they Google various terms. As you might imagine, some fairly comical connections are made (somebody in Brooklyn found me by entering "burning armpits pleasure" into Google, and I get quite a few hits from people looking for images of Bif Naked since I posted one a while back). Others reassure me that I'm not alone in suffering my weird feelings ("sore numb armpit upper back pain," Googled somebody in Lake Mary, Florida).
Meanwhile, I'm feeling kind of shitty. Yesterday afternoon, though my cold is a fairly minor one, I suddenly got so weary I ended up sleeping all afternoon. I think it may be the heat.
Occasionally I stumble on breast cancer blogs when I summon the courage to Google aspects of my illness, and I was glad I did this morning. Sort of. I came across this blog by Trisha Ekstrom (not updated for some months, alas) when I Googled "numbness" and "breast surgery," and found this passage:
I stand in the bathroom doorway, half dressed, trying to explain to Cary the funny feeling running along the back of my armit. The sensation is more pronounced today than on other days. It's like this numbness... It's tingly... It's not painful, but... I struggle to find the right words to explain it. Like your foot is asleep? Cary offers. Yes. That's kind of it. I don't like it...That is it, exactly. It's a horrible feeling but not exactly painful. I went on to do more Googling and discovered scads of women with similar symptoms -- in some cases they went away, and in some they were permanent. Though I've come to accept that the lymph-node removal resulted in a lot of nerve damage (I can't for the life of me think why I didn't research this more before my surgery, or why my surgeon didn't fully explain it), I hadn't realized that similar sensations can occur when breasts have been removed, which has made me think twice about prophylactic mastectomy.
Convinced I have lymphadema, (which I don't--lymphadema specifically refers to swelling of the arm), I grab two of my many books on breast cancer to peruse before going to sleep. I consult Living in the Post-Mastectomy Body first--a book I initially hated. (Sorry Lana. Keep in mind I at first hated Susan Love's The Breast Book too. In fact, I stomped on that one.) Right next to the section on lymphadema is a section titled "Numbness". I read avidly:
"You may notice numbness in the surgical area after your mastectomy. This can occur in a a very small localized area, or extend into the surrounding tissues. There is a major sensory nerve in the armpit and nerves in the chest area that can be cut or injured during surgery. It is usually described as a numb sensation, but that is not how my friends, clients, or I describe it. Numbness implies that all sensation in gone, but what I experienced after surgery was a mixture of numbness and an unpleasant feeling that was very uncomfortable, distracting, and annoying, but not exactly painful.... The numbness seems to come and go with changes in the weather and is influenced by how much the area is rubbed by clothing. I have noticed that fatigue makes it worse..." (pg. 41).
Yes! That's it exactly. Not only that, but it was raining and I hadn't gotten much sleep the night before. Now that the book has been redeemed, I make Cary come listen while I read the section aloud to him. Satisfied somehow to see a description of what I'm feeling in print, I can go to bed (as soon as I read the chapter on treatment for this discomfort).
Trisha Ekstrom was part of The Scar Project, which I also discovered for the first time through her blog: a series of photos of partially naked women with breasts missing, breasts reconstructed, nipples missing, scars in full or partial view. They're beyond striking, often disturbing, sometimes erotic and sultry, always brave and beautiful (don't click on the link if this sort of thing is too much for you), and they made me feel stronger and less fearful, to my surprise.
Through Sitemeter, I can sometimes get a faint picture of those who find my blog when they Google various terms. As you might imagine, some fairly comical connections are made (somebody in Brooklyn found me by entering "burning armpits pleasure" into Google, and I get quite a few hits from people looking for images of Bif Naked since I posted one a while back). Others reassure me that I'm not alone in suffering my weird feelings ("sore numb armpit upper back pain," Googled somebody in Lake Mary, Florida).
Meanwhile, I'm feeling kind of shitty. Yesterday afternoon, though my cold is a fairly minor one, I suddenly got so weary I ended up sleeping all afternoon. I think it may be the heat.
Wednesday, June 24, 2009
Dr. Third recommends Dr. Second
This is the week I'm supposed to be feeling not so bad, but I picked up a cold on the weekend, so I'm not 100%. My poor dad was the source of the cold; still, we had a really nice family Father's Day lunch, so it was worth it. And I've had worse colds -- despite research to the contrary, echinacea always seems to halt the progress of colds for me, and I always take it. It's been six weeks now that I've been coughing, however. In any case, I have more energy than I did last week and have been trying to walk every day. My back is behaving very well, but I mustn't push it.
On Monday, I made the pilgrimage out to Mississauga to get a third opinion from an orthopedic surgeon about spinal surgery. Dr. Third was very nice -- perhaps because I brought with me a lovely and generous woman who is a friend of a cousin and was operated on by Dr. Third for similar problems -- and overall he said the same things as Dr. Second did: I've got junctional kyphosis and compression fractures in my upper spine and spondylolisthesis in my lower spine. He says he's pretty sure it's mechanical and not cancer. He was a little more cautious about surgery, saying it isn't something to go into lightly, and I shouldn't do it unless I'm in serious pain. He agreed that the surgeon would take out as much of the steel rod as possible, and as for whether a "pedicle subtraction osteotomy" or a "Smith-Petersen" procedure (basically different ways of removing parts of the vertebra) would be called for, he said any surgeon would probably not decide what to do until he got in there. In fact, because the former procedure could cause excessive bleeding, they could go in and stop halfway through and resume at a later date! He said that once I'm opened up, anything could present itself, including a spine too osteoporotic to operate on.
But when I told him that Dr. Second sounded quite confident that he could help me, he said, "If he says that, then I'd believe him. I've seen him do amazing things." He told me that Dr. Second is highly experienced at this, even more so than he is himself. As for the first orthopod I went to, who was very discouraging about surgery, Dr. Third volunteered that that guy is not very experienced at all.
The experience thing is interesting: my brother has been going to Dr. Second for years, and putting off surgery because initially Dr. Second was discouraging about the odds of its succeeding. But lately, says my brother, Dr. Second has been more optimistic. I suppose that techniques have improved in the years he's been seeing him, but also his own skill has no doubt improved by leaps and bounds. Our biggest fear is that by the time we decide to have surgery, Dr. Second will have decamped to the U.S. like all the other good orthopedic surgeons before him.
Anyway, I'm experimenting with the Naproxen and will stop taking it again soon just to see if my back gets worse again. That will help me make the decision about surgery. Of course, just like a woman, I have to admit that despite the recent improvement in pain levels, I would most like to have the surgery for cosmetic reasons: to regain my lost height and eliminate that horrible hump at the base of my skull.
In the meantime, I'm again thinking about double mastectomy; more research to do.
Pollyanna moments:
On Monday, I made the pilgrimage out to Mississauga to get a third opinion from an orthopedic surgeon about spinal surgery. Dr. Third was very nice -- perhaps because I brought with me a lovely and generous woman who is a friend of a cousin and was operated on by Dr. Third for similar problems -- and overall he said the same things as Dr. Second did: I've got junctional kyphosis and compression fractures in my upper spine and spondylolisthesis in my lower spine. He says he's pretty sure it's mechanical and not cancer. He was a little more cautious about surgery, saying it isn't something to go into lightly, and I shouldn't do it unless I'm in serious pain. He agreed that the surgeon would take out as much of the steel rod as possible, and as for whether a "pedicle subtraction osteotomy" or a "Smith-Petersen" procedure (basically different ways of removing parts of the vertebra) would be called for, he said any surgeon would probably not decide what to do until he got in there. In fact, because the former procedure could cause excessive bleeding, they could go in and stop halfway through and resume at a later date! He said that once I'm opened up, anything could present itself, including a spine too osteoporotic to operate on.
But when I told him that Dr. Second sounded quite confident that he could help me, he said, "If he says that, then I'd believe him. I've seen him do amazing things." He told me that Dr. Second is highly experienced at this, even more so than he is himself. As for the first orthopod I went to, who was very discouraging about surgery, Dr. Third volunteered that that guy is not very experienced at all.
The experience thing is interesting: my brother has been going to Dr. Second for years, and putting off surgery because initially Dr. Second was discouraging about the odds of its succeeding. But lately, says my brother, Dr. Second has been more optimistic. I suppose that techniques have improved in the years he's been seeing him, but also his own skill has no doubt improved by leaps and bounds. Our biggest fear is that by the time we decide to have surgery, Dr. Second will have decamped to the U.S. like all the other good orthopedic surgeons before him.
Anyway, I'm experimenting with the Naproxen and will stop taking it again soon just to see if my back gets worse again. That will help me make the decision about surgery. Of course, just like a woman, I have to admit that despite the recent improvement in pain levels, I would most like to have the surgery for cosmetic reasons: to regain my lost height and eliminate that horrible hump at the base of my skull.
In the meantime, I'm again thinking about double mastectomy; more research to do.
Pollyanna moments:
- My neighbour Daryl drove me to the appointment in Mississauga and later we got lost trying to find a particular restaurant he likes. But it was interesting to be driving somewhere I never go, even a leafy suburb.
- Matt and I just used iChat to do a videoconference between Toronto and Red Deer, and I got to see all his house renovations and he got to see my backyard jungle. Plus I got to see his mom, which was nice since she recently had heart surgery.
Friday, June 19, 2009
Guilt
It's been about 10 days since the last chemo treatment, and yesterday I started feeling a little human again -- more energy, less weakness, less burning numbness in my mouth and throat, less coughing. This round was not as bad as the last one, perhaps because I was given Neupogen for five days right away.
But the days of feeling like a dishrag have gradually made me seriously addicted to lying on the couch watching CSI and Star Trek while playing Solitaire or doing jigsaw puzzles on my laptop. There's a fine line between feeling sick, and being lazy and self-indulgent, and navigating that line is emotionally exhausting in itself. I feel guilty for wasting so much time on mindless non-activities but I feel even more guilty if I do something productive, because it leads to the question: "If I can spend the afternoon blogging and filing old photographs, why shouldn't I be working at my paid job?" That guilt makes it easier to choose laziness; if I'm not doing anything but lie on the couch and watch TV, then I must be really sick. I fear that if someone sees me walking to the grocery store or weeding my garden, they'll say, "Why is she collecting disability insurance?"
Would I simply rise to the occasion if I was compelled to go to the office every day, and therefore get better faster? So many people, without insurance, have no choice, although I believe research shows that cancer patients who don't take time off during their treatment are more likely to get infections, not complete their treatment, etc.
One of my brothers, who has a terribly painful back condition, is a stoic and I think he believes that to stop working is to give in and to put oneself in the unhealthy position of having to stay sick in order to justify one's disabled status and benefits.
The truth is, I am sick, but sick is a moving target that shifts from one week, day and hour to the next. Where I am in my chemotherapy cycle is a big determiner, but how I feel is still somewhat unpredictable. I've been puttering around the house this morning and even made a cake for someone, and felt almost normal, except for the steadily increasing numbness and tightness in my armpit and breast. Then I walked to the local post office (which, I discovered to my dismay, is closing down). A walk that normally feels like nothing left me ... I can't describe the feeling: I'm not really winded, though I am breathing a lot harder than usual, but my body just doesn't seem to respond correctly. It's heavy and doesn't want to move. It's like dragging weights on my legs.
It's one thing to say I could do a couple of hours of work each day, but not all days, and another to be capable of working full-time.
At least my back is allowing me to walk, as long as I take the NSAIDs; that's a huge improvement. I've been taking note on the couple of recent occasions when I've sat in a restaurant reading a book that I can't sustain that position for more than a short while before my shoulder blade begins to burn and ache, and I really wonder how long I could sit at a desk and copy edit a magazine.
Anyway, I must try not to worry about others second-guessing my level of illness. It reminds me of the days when I had severe sciatica, especially in my 20s, when I could easily run for the streetcar, but once I got on could not stand in one spot without terrible pain and sometimes came very close to begging someone to give me a seat. No one would have done so, of course, after watching me run for the streetcar. Disability is not easy for anyone to judge, sometimes even the person who's disabled.
And I've been cutting out some of the TV watching and reading books instead; just finished Love's Civil War, the letters and diaries of novelist Elizabeth Bowen and Canadian diplomat Charles Ritchie (one of those books that isn't 100 percent successful but whose last line is devastating and completely changes the way you view the whole book), and now I'm reading Barack Obama's Dreams from my Father and The Gathering by Anne Enright.
Pollyanna moments:
But the days of feeling like a dishrag have gradually made me seriously addicted to lying on the couch watching CSI and Star Trek while playing Solitaire or doing jigsaw puzzles on my laptop. There's a fine line between feeling sick, and being lazy and self-indulgent, and navigating that line is emotionally exhausting in itself. I feel guilty for wasting so much time on mindless non-activities but I feel even more guilty if I do something productive, because it leads to the question: "If I can spend the afternoon blogging and filing old photographs, why shouldn't I be working at my paid job?" That guilt makes it easier to choose laziness; if I'm not doing anything but lie on the couch and watch TV, then I must be really sick. I fear that if someone sees me walking to the grocery store or weeding my garden, they'll say, "Why is she collecting disability insurance?"
Would I simply rise to the occasion if I was compelled to go to the office every day, and therefore get better faster? So many people, without insurance, have no choice, although I believe research shows that cancer patients who don't take time off during their treatment are more likely to get infections, not complete their treatment, etc.
One of my brothers, who has a terribly painful back condition, is a stoic and I think he believes that to stop working is to give in and to put oneself in the unhealthy position of having to stay sick in order to justify one's disabled status and benefits.
The truth is, I am sick, but sick is a moving target that shifts from one week, day and hour to the next. Where I am in my chemotherapy cycle is a big determiner, but how I feel is still somewhat unpredictable. I've been puttering around the house this morning and even made a cake for someone, and felt almost normal, except for the steadily increasing numbness and tightness in my armpit and breast. Then I walked to the local post office (which, I discovered to my dismay, is closing down). A walk that normally feels like nothing left me ... I can't describe the feeling: I'm not really winded, though I am breathing a lot harder than usual, but my body just doesn't seem to respond correctly. It's heavy and doesn't want to move. It's like dragging weights on my legs.
It's one thing to say I could do a couple of hours of work each day, but not all days, and another to be capable of working full-time.
At least my back is allowing me to walk, as long as I take the NSAIDs; that's a huge improvement. I've been taking note on the couple of recent occasions when I've sat in a restaurant reading a book that I can't sustain that position for more than a short while before my shoulder blade begins to burn and ache, and I really wonder how long I could sit at a desk and copy edit a magazine.
Anyway, I must try not to worry about others second-guessing my level of illness. It reminds me of the days when I had severe sciatica, especially in my 20s, when I could easily run for the streetcar, but once I got on could not stand in one spot without terrible pain and sometimes came very close to begging someone to give me a seat. No one would have done so, of course, after watching me run for the streetcar. Disability is not easy for anyone to judge, sometimes even the person who's disabled.
And I've been cutting out some of the TV watching and reading books instead; just finished Love's Civil War, the letters and diaries of novelist Elizabeth Bowen and Canadian diplomat Charles Ritchie (one of those books that isn't 100 percent successful but whose last line is devastating and completely changes the way you view the whole book), and now I'm reading Barack Obama's Dreams from my Father and The Gathering by Anne Enright.
Pollyanna moments:
- My house is still cool even though it's warm outside (I have no central air, so that's crucial).
- Last Sunday afternoon, Diane and I had a lovely hour sitting on the lakeshore at Ashbridge's Bay, watching the geese and the blue water shining in the sun. But, because we cheated a little when parking Diane's car, we ended up getting a $105 ticket! We decided it was worth it.
- On my walk this morning, I actually stopped and smelled some roses!
Sunday, June 14, 2009
Self-pity and PET scans
Apologies for that self-pitying rant yesterday. After all the excitement of the previous week, I think I crashed a little. I admit I am feeling isolated and lonesome, along with the fatigue, but I hope to get outside today and I know that will perk me up.
New topic: I'd be curious to hear from any Canadians who have had a PET scan for breast cancer. My medical oncologist is suggesting I have one, I suppose in hopes that it might finally confirm whether I have bone metastasis or not. But because it's not covered by medical insurance, a PET scan would cost me $3,000. The doc says she's been told that the technologists sometimes negotiate the price downward, but she can't confirm that. This article from breastcancer.org suggests that the test isn't very reliable, and my radiation oncologist didn't seem very enthusiastic about doing one. Other articles I've read suggest that the PET scan doesn't pick up breast tumours very well, but it can detect spread in the bone and elsewhere. This one seems hopeful, but it doesn't have a date on it! God, that makes me crazy.
Meanwhile, will Canadian government fuckups over the production of radioactive isotopes at Chalk River prevent me from having a regular bone scan when my treatment is done? They really dropped the ball on that one; it's shocking.
New topic: I'd be curious to hear from any Canadians who have had a PET scan for breast cancer. My medical oncologist is suggesting I have one, I suppose in hopes that it might finally confirm whether I have bone metastasis or not. But because it's not covered by medical insurance, a PET scan would cost me $3,000. The doc says she's been told that the technologists sometimes negotiate the price downward, but she can't confirm that. This article from breastcancer.org suggests that the test isn't very reliable, and my radiation oncologist didn't seem very enthusiastic about doing one. Other articles I've read suggest that the PET scan doesn't pick up breast tumours very well, but it can detect spread in the bone and elsewhere. This one seems hopeful, but it doesn't have a date on it! God, that makes me crazy.
Meanwhile, will Canadian government fuckups over the production of radioactive isotopes at Chalk River prevent me from having a regular bone scan when my treatment is done? They really dropped the ball on that one; it's shocking.
Saturday, June 13, 2009
80/20
Right on cue yesterday morning the side effects of the Docetaxel kicked in, though not as heavily as last time. I'm very tired, feel numb and tingly all over and have a big lump in my throat. I want to eat all the time to drive away the taste in my mouth, although it's hard to taste my food. The home-care nurse came this morning and started me on another five days of Neupogen shots -- apparently I'll have them as a matter of course since my white-blood-cell count went so low on the last round.
On Thursday, I went to my radiation oncologist to discuss the next stage of treatment, which will start at the beginning of August, after I've had a month to recover from chemo. She feels less and less inclined to think there's cancer in my bones, and she's only going to radiate my armpit for now. "Bone mets aren't life threatening," she said, "and if there are some later, we can treat them later." Bone mets may not threaten my life themselves, but -- I thought, but didn't say -- they're a sign that your life is being threatened.
Still, I made the mistake of asking her what my chances are of collecting my pension; though she declined to give an answer to that specific question, she gave me worse odds than I'd expected: I could swear that my surgeon told me some months ago (to my surprise at the time) that, with chemo and radiation, there was an 80 percent chance the cancer would NOT spread further; this doc said it was 20 percent, so I guess I got it reversed. And that's only if there are no bone metastases. If the cancer is in the bones, there is no cure, for sure. In any case, she reiterated that this cancer is aggressive and serious, and everything rides on the chemo and radiation since it's not sensitive to any hormones or proteins and therefore there are no long-term drug therapies for me.
Actually, I had initially assumed that as long as the cancer was in the lymph nodes, there was no cure, so I suppose I should be happy there's any chance at all that it won't return, even if 20 percent isn't very promising. The ups and downs of this diagnosis have made it hard to plan what's left of my life. But I guess we're all in that boat to a greater or lesser extent.
The radiation doc said she doesn't think I have lymphedema since my hand isn't swollen, but sympathized with the breast swelling and discomfort I've been in since the surgery. She says there's a five-percent chance I'll get lymphedema from the radiation.
Pollyanna moments:
On Thursday, I went to my radiation oncologist to discuss the next stage of treatment, which will start at the beginning of August, after I've had a month to recover from chemo. She feels less and less inclined to think there's cancer in my bones, and she's only going to radiate my armpit for now. "Bone mets aren't life threatening," she said, "and if there are some later, we can treat them later." Bone mets may not threaten my life themselves, but -- I thought, but didn't say -- they're a sign that your life is being threatened.
Still, I made the mistake of asking her what my chances are of collecting my pension; though she declined to give an answer to that specific question, she gave me worse odds than I'd expected: I could swear that my surgeon told me some months ago (to my surprise at the time) that, with chemo and radiation, there was an 80 percent chance the cancer would NOT spread further; this doc said it was 20 percent, so I guess I got it reversed. And that's only if there are no bone metastases. If the cancer is in the bones, there is no cure, for sure. In any case, she reiterated that this cancer is aggressive and serious, and everything rides on the chemo and radiation since it's not sensitive to any hormones or proteins and therefore there are no long-term drug therapies for me.
Actually, I had initially assumed that as long as the cancer was in the lymph nodes, there was no cure, so I suppose I should be happy there's any chance at all that it won't return, even if 20 percent isn't very promising. The ups and downs of this diagnosis have made it hard to plan what's left of my life. But I guess we're all in that boat to a greater or lesser extent.
The radiation doc said she doesn't think I have lymphedema since my hand isn't swollen, but sympathized with the breast swelling and discomfort I've been in since the surgery. She says there's a five-percent chance I'll get lymphedema from the radiation.
Pollyanna moments:
- The weather is nice, though I'm mostly lying on the couch in a windowless room. I managed to do a little weeding in the front garden yesterday morning until my back gave out, and it was lovely to scratch around among the thyme, which looks like it's dying but still smells great. I've been reading Vanity Fair this morning, and envying Johnny Depp his yacht in the Caribbean, as I look forward to a long, isolated, urban summer. But though I occasionally fantasize about getting out of the city to some exotic destination, what I mostly long for is to visit my ageing aunts and uncles in the places I call home: Massey, Manitoulin Island, Pembroke. I miss them, and treasure the visits I made there in the past couple of summers. My trip to Manitoulin with my parents and brother last year was heavenly, both because it's a magical place and because it was probably the last time I got to sit around with my mom and dad and aunts and uncles and sing old songs to the fiddle and the harmonica.
Monday, June 08, 2009
Speechifying
OK, so here's the text of the speech I made accepting the Outstanding Achievement Award from the National Magazine Awards Foundation:
June 5, 2009, The Carlu, Toronto
Thanks, Maryam [Sanati, editor-in-chief of Chatelaine], for that kind introduction. I always said I’d be able to tell people one day, “I knew you when…”
When Patrick Walsh telephoned me to say I was being given the Outstanding Achievement Award, I rather gauchely accused him of messing with my head. It’s an enormous honour to be included in the list of past recipients, about 10 of whom I’ve worked for at some point over the years. People like Bob Fulford, John Macfarlane, Peter Newman and Barbara Moon, whom, sadly, we lost just a few weeks ago, taught me so much of what I know about magazines. The other day I was reading Diana Athill’s book Stet about her 50 years in book publishing, in which she said that as a copy editor she was one of the “humbler but still essential people who tidy texts.” For much of my career I have been proud to be simply a text tidier for those illustrious bosses of mine.
Then I recalled the first time this award was given, in 1990. The Foundation chose at that time to honour Prue Hemelrijk, a legendary fact-checker. At the time I was thrilled that we were recognizing the contribution of one of those “behind-the-scenes” magazine folks, someone whose career was devoted to research, accuracy, and the kind of attention to detail that elevates magazine writing, in my opinion, above other genres. And although I’m also a writer and an educator, in giving me this award, the Foundation has chosen again to send the message that fact-checking and copy-editing, which have comprised a large part of my career, are vital to magazines, are indeed a large part of our currency, what we offer the people who buy what we have to sell. In other words, magazine readers love magazines because their texts are tidy and what they say is true.
Fact-checking and copy-editing are often referred to as junior editorial skills. Prue Hemelrijk and I are just two people who belie that definition. I am junior neither by age nor by years on the job. It’s true that copy-editing and fact-checking are excellent training grounds for interns and new staff. But magazines with high standards also call upon wisdom and experience for this important task. By giving me this award, you are honouring a host of other checkers and copy editors who uphold these standards. I’m talking about people like – and I’m going to miss some here – Veronica Maddocks, Eileen Whitfield, Geri Savits-Fine, Charles Rowland, Dawn Promislow, Catherine Dowling, Brenda Thompson, Ruth Hanley, Barbara Czarnecki, Pam Capraru and so many others, many of whom are also excellent writers and creators and editors. I’m talking about people who are earlier on in their careers, like Megan Giffith-Greene, who are also doing a great job of helping writers in their task of getting everything right.
Apparently Prue shared with the world her most embarrassing moments as a text tidier, and perhaps I should do the same. Typos on my watch have mostly made people laugh, and I like doing that almost as much as I like getting it right, so I confess I’m not kept up at night by mutual funds defined as a professionally managed pool of asses. I did lose some sleep when Bob Fulford wrote a profile for Toronto Life of Holy Blossom Temple and I let a pullquote slip that called it Holly Blossom.
But I lose even more sleep over the future of magazine copy-editing and fact-checking. I don’t know whether people who decry apparently sliding standards are just Chicken Littles. Maybe that’s just what we do. But I know the pay rates for fact-checking are sliding. And as the editorial staffs of print magazines inevitably merge with the online sides of those magazines, I wonder which side’s standards will prevail. I urge those of you who have something to say about this to pay attention to the care and time and effort that has, after all, distinguished magazines in the first place in the minds and hearts of our audience.
I tried to leave the magazine business. Several times. I could never quite make my escape. In the end I kept coming back to it for one reason. My writing has often focused on the idea of community, and what I found in the magazine business, even on those days when I wondered why the hell I was sticking around, was a community. Tonight is the best evidence of that. I’ve been coming to this shindig for nearly 30 years, missing very few, and I’ve always been amused by the uneasy mixture of cynicism that magaziners fall prey to and pride in our accomplishments – the mixture of competitiveness and camaraderie -- that the Mag Awards typically mark. Today we are undergoing profound change intertwined with economic struggle, and what our industry will look like in a couple of years is a troubling mystery. I believe it is all the more important – not less important -- at this time to celebrate ourselves and to gather for a night like this – to reaffirm our sense of community in the face of obstacles – and I commend people like Kim Pittaway and Brian Stendel and D.B. Scott and all of the individuals they mobilized to contribute financially so that tonight could happen.
I want to thank the Foundation, its board members and the people who wrote letters supporting my nomination. I want to thank the many students and interns I’ve had the privilege to work with over 21 years of teaching. You’ve taught me all about learning, which is the most satisfying thing any of us can ever do. Finally, I’d like to tip my hat to my cheering section here tonight, a group of amazing people who have been helping me through my cancer treatment.
Thank you, thank you, thank you.
Sunday, June 07, 2009
Pollyanna and the City
When my oncologist suggested that I postpone my chemotherapy treatment by one week so I could attend the National Magazine Awards gala at which I was to receive the Outstanding Achievement Award, I was a little skeptical: should I endanger my life to pick up a plaque? Then she added that I would benefit from the emotional high that would ensue from having a fun night and being the centre of attention; she said it would boost my immune system and make the chemo work even better. "We don't pay enough attention to the psychological and emotional effects of such things on our immune systems," she said. I was even more skeptical.
But I believe her now. I have had such a great few days, and I'm sure it's helped my health. Joan D. flew out from Calgary on Wednesday and we attended a dinner party with some of my old Ryerson classmates at Liz's, which was fun. On Thursday, Joan and I rested in my backyard -- the weather has been sunny, dry and not too hot, my favourite kind -- and went for a short walk to the local coffee shop. My back is behaving better since I resumed taking the Naproxen, and as far as chemo effects, I am feeling almost human again, despite a hacking cough.
On Friday, the day of the gala, Mom and Rosemary arrived from Kitchener, and we had a girlie afternoon; I decided to wear my sparkly Indian lengha and to go completely bald instead of wearing the wig. To enhance the effect, I had a neighbour of mine come over and do my makeup -- not just any neighbour, but Diana Carreiro, who is a top makeup artist with The Artist Group, and who is featured in that award-winning "Evolution" video from the Dove Real Beauty campaign (you can't see her face very clearly, but it's her doing the makeup and hair). She does a lot of charity work, including for Look Good Feel Better, and I was thrilled to be the recipient of her largesse. The makeup made a big difference, I think. With a bald head, as Diana said, it's go big or go home. It felt like a lot of paint to me, but Diana told me that when she did Sophia Loren's face at the film festival, the actress wouldn't have left the room with as little makeup as she put on me, so I guess it's all relative. Anyway, I think it worked.
I had a table of 10 friends with me at the gala, which was held at the magnificent Carlu -- women who've been unbelievably helpful to me during my illness. My award was the first one -- I think the organizers planned it that way in case I didn't feel well enough to stick around. But I felt pretty good, and ended up staying the whole night. I'm sure adrenaline helped me stand upright, but the right drugs and having time to recover from the chemo was the key. It was a magical evening. Maryam Sanati introduced me, and made me blush. Worse was the gale of laughter that went up around my table when Maryam repeatedly noted how "quiet" I am. Not sure what she meant by that! It's not an adjective most people who know me would use. Nevertheless, I was moved by her kind comments.
My own speech was a little on the long side, and I rushed through it, but I think it went over well. I took a stand for those of us who do the behind-the-scenes work of fact-checking and copy-editing, decrying sliding standards as magazines migrate to the web. Quite a few people came up to me later and said I'd made them resolve to do better. It's probably a futile quest, but I had to use the opportunity of having a platform to speak my mind.
I was well aware that I had been selected for this award partially as a representative of all the unsung people who do this kind of work, and the best part of delivering the speech was the opportunity to name as many of them as I could, and to hear the crowd cheer after each name. That was special. Perhaps I'll post my speech in a separate entry.
I wasn't nervous, but when I finished reading the speech and started down the steps in front of the stage, Maryam had to grab my arm because my legs simply turned to water and began to shake. I guess it was an adrenaline response.
My "Doris & Me" story didn't win anything, but I didn't expect it to, so that was fine.
Anyway, it was great to see lots of colleagues and to feel like a human being, let alone a celebrated human being. The next day, Mom went back to Kitchener (my sister was kind enough to look after my dad for the night so Mom could attend, for which I was really grateful; my Dad is aware enough to understand that I was receiving an honour, and I've saved a sweet phone message in which he congratulated me in his halting voice). Diane, Joan and I had breakfast at the local greasy spoon, and last night Joan and I went for dinner at Gio Rana's Really Really Nice Restaurant, a hidden Leslieville hot spot in what used to be my old branch of the Bank of Montreal. The food there is wonderful -- kind of neo-Italian, and they serve small plates that combine to make a splendid meal -- and I had a glass of wine for the first time in months.
It sounds silly, but I felt as though all those episodes of Sex and the City I watched last week when I was so sick had come alive for me for a few days (minus all the relationship angst -- thank God that's all behind me). The memories will help me as I head into round five of chemo.
But I believe her now. I have had such a great few days, and I'm sure it's helped my health. Joan D. flew out from Calgary on Wednesday and we attended a dinner party with some of my old Ryerson classmates at Liz's, which was fun. On Thursday, Joan and I rested in my backyard -- the weather has been sunny, dry and not too hot, my favourite kind -- and went for a short walk to the local coffee shop. My back is behaving better since I resumed taking the Naproxen, and as far as chemo effects, I am feeling almost human again, despite a hacking cough.
On Friday, the day of the gala, Mom and Rosemary arrived from Kitchener, and we had a girlie afternoon; I decided to wear my sparkly Indian lengha and to go completely bald instead of wearing the wig. To enhance the effect, I had a neighbour of mine come over and do my makeup -- not just any neighbour, but Diana Carreiro, who is a top makeup artist with The Artist Group, and who is featured in that award-winning "Evolution" video from the Dove Real Beauty campaign (you can't see her face very clearly, but it's her doing the makeup and hair). She does a lot of charity work, including for Look Good Feel Better, and I was thrilled to be the recipient of her largesse. The makeup made a big difference, I think. With a bald head, as Diana said, it's go big or go home. It felt like a lot of paint to me, but Diana told me that when she did Sophia Loren's face at the film festival, the actress wouldn't have left the room with as little makeup as she put on me, so I guess it's all relative. Anyway, I think it worked.
I had a table of 10 friends with me at the gala, which was held at the magnificent Carlu -- women who've been unbelievably helpful to me during my illness. My award was the first one -- I think the organizers planned it that way in case I didn't feel well enough to stick around. But I felt pretty good, and ended up staying the whole night. I'm sure adrenaline helped me stand upright, but the right drugs and having time to recover from the chemo was the key. It was a magical evening. Maryam Sanati introduced me, and made me blush. Worse was the gale of laughter that went up around my table when Maryam repeatedly noted how "quiet" I am. Not sure what she meant by that! It's not an adjective most people who know me would use. Nevertheless, I was moved by her kind comments.My own speech was a little on the long side, and I rushed through it, but I think it went over well. I took a stand for those of us who do the behind-the-scenes work of fact-checking and copy-editing, decrying sliding standards as magazines migrate to the web. Quite a few people came up to me later and said I'd made them resolve to do better. It's probably a futile quest, but I had to use the opportunity of having a platform to speak my mind.
I was well aware that I had been selected for this award partially as a representative of all the unsung people who do this kind of work, and the best part of delivering the speech was the opportunity to name as many of them as I could, and to hear the crowd cheer after each name. That was special. Perhaps I'll post my speech in a separate entry.
I wasn't nervous, but when I finished reading the speech and started down the steps in front of the stage, Maryam had to grab my arm because my legs simply turned to water and began to shake. I guess it was an adrenaline response.
My "Doris & Me" story didn't win anything, but I didn't expect it to, so that was fine.
Anyway, it was great to see lots of colleagues and to feel like a human being, let alone a celebrated human being. The next day, Mom went back to Kitchener (my sister was kind enough to look after my dad for the night so Mom could attend, for which I was really grateful; my Dad is aware enough to understand that I was receiving an honour, and I've saved a sweet phone message in which he congratulated me in his halting voice). Diane, Joan and I had breakfast at the local greasy spoon, and last night Joan and I went for dinner at Gio Rana's Really Really Nice Restaurant, a hidden Leslieville hot spot in what used to be my old branch of the Bank of Montreal. The food there is wonderful -- kind of neo-Italian, and they serve small plates that combine to make a splendid meal -- and I had a glass of wine for the first time in months.
It sounds silly, but I felt as though all those episodes of Sex and the City I watched last week when I was so sick had come alive for me for a few days (minus all the relationship angst -- thank God that's all behind me). The memories will help me as I head into round five of chemo.
Tuesday, June 02, 2009
Encouraged
The most difficult thing for me to handle when it comes to my health is not knowing what's causing my symptoms. I'm far too controlling and self-absorbed to handle the fact that the human body simply throws more and more weirdness at us as we age, much of which will remain a mystery. If I don't understand what's happening to me, I feel anxious.
So I was relieved after my long-awaited appointment with Dr. Second yesterday, the orthopedist I last saw in February. First of all, he was still confident that he can successfully operate on my spine. More reassuring still, when I got a good look at my X-ray, taken from the side, it was really obvious why my upper back hurts so much and why I've got this ugly hump there now and why I've lost an inch and a half in height. The metal rod is still aiming skyward, but my spine has curved so far forward that it's amazing the rod hasn't come right through my skin. Any wonder I hurt so much! Still, the doctor agreed that the pain lessened a few weeks ago because the fractures healed and there is a bit less movement there. And last night I concluded that the reason I've been in more pain this past week is that I stopped taking the NSAID. I may start taking it again today. Reasons, reasons: that's what I need.
Dr. Second was in a great mood, to my surprise. In the past I've found him a bit arrogant and humourless, but then I've mostly seen him with other men around; last time Jay came with me, and there have always been young male surgical residents in the room, too. This time I was with Jocelyn, and the doc was accompanied by a female nurse practitioner. In any case, unlike all the folks at my usual hospital, who insist I can't have an MRI because of the metal in my back, he says he can take an MRI of my spine, after my radiation treatment is done; it may not be a clear picture around the rods, but he'll be able to see some parts at the top and bottom. He says he will assess the situation at that time and we can decide whether some repair is needed in my lower spine as well, which he can do at the same time (more dangerous, and it would diminish my ability to tie my own shoes) and we will decide whether to simply fuse the upper spine (pretty safe) below the neck, or to remove the broken vertebra as well (which will, oddly, restore more height, but is more complicated). He had told me before that the vertebra removal is called pedicle subtraction osteotomy; he seemed a bit reluctant about it this time, and suggested another procedure called a Smith-Peterson osteotomy, which is somehow less invasive (I don't understand how).
Depending on what he does, the surgery could be up to six hours long. He says he might not be able to do a biopsy if he doesn't do the osteotomy, so I may never know if there was cancer in my spine (he doesn't think so). He says he usually recommends patients donate their own blood in advance of surgery, but in my case it's not a good idea because of the cancer. Apparently, they also usually recycle a patient's own blood during surgery, and I won't be able to do that, either. So I'll need a big blood transfusion.
I told him I was going for a third opinion from Dr. Third in Mississauga, and he agreed that was a good idea and assured me that Dr. Third is very skilled at this, as well. So I know I've found the right doctors for the job.
The idea that I might be able to get my upper back straightened out -- for pain reasons and cosmetic reasons -- lifted my spirits. But I know too well that as often as not these procedures fix one thing and screw up something else. Still, I am going to call today and book the MRI for September and the surgery for November. I can always cancel. Dr. Second does not recommend being in a hurry to do the surgery; he wants me to be fully recovered from the cancer treatment, and says if the pain does not impede my lifestyle, I should hesitate. We'll see. At the moment, I still cannot imagine leaning over a desk for any length of time.
In the meantime, I am coughing up a storm and still feeling pretty miserable, though I'm walking better than I was on Sunday. But, based on reports from others, I have concluded that this cough is a result of allergies -- I don't usually get this in the spring, but I sometimes do in August. Once I get a post-nasal drip going, it's not long before it turns into a deep, hacking cough. And my coughs last forever without treatment. I guess I should drag myself to my family doctor.
Pollyanna moment: Diane and Jill took me to the Royal Botanical Gardens on Sunday. I had to be in the wheelchair the whole time, and didn't feel very well, but I really enjoyed the beautiful "Lilac Walk," the largest collection of lilacs in the world. It was peaceful and smelled heavenly.
So I was relieved after my long-awaited appointment with Dr. Second yesterday, the orthopedist I last saw in February. First of all, he was still confident that he can successfully operate on my spine. More reassuring still, when I got a good look at my X-ray, taken from the side, it was really obvious why my upper back hurts so much and why I've got this ugly hump there now and why I've lost an inch and a half in height. The metal rod is still aiming skyward, but my spine has curved so far forward that it's amazing the rod hasn't come right through my skin. Any wonder I hurt so much! Still, the doctor agreed that the pain lessened a few weeks ago because the fractures healed and there is a bit less movement there. And last night I concluded that the reason I've been in more pain this past week is that I stopped taking the NSAID. I may start taking it again today. Reasons, reasons: that's what I need.
Dr. Second was in a great mood, to my surprise. In the past I've found him a bit arrogant and humourless, but then I've mostly seen him with other men around; last time Jay came with me, and there have always been young male surgical residents in the room, too. This time I was with Jocelyn, and the doc was accompanied by a female nurse practitioner. In any case, unlike all the folks at my usual hospital, who insist I can't have an MRI because of the metal in my back, he says he can take an MRI of my spine, after my radiation treatment is done; it may not be a clear picture around the rods, but he'll be able to see some parts at the top and bottom. He says he will assess the situation at that time and we can decide whether some repair is needed in my lower spine as well, which he can do at the same time (more dangerous, and it would diminish my ability to tie my own shoes) and we will decide whether to simply fuse the upper spine (pretty safe) below the neck, or to remove the broken vertebra as well (which will, oddly, restore more height, but is more complicated). He had told me before that the vertebra removal is called pedicle subtraction osteotomy; he seemed a bit reluctant about it this time, and suggested another procedure called a Smith-Peterson osteotomy, which is somehow less invasive (I don't understand how).
Depending on what he does, the surgery could be up to six hours long. He says he might not be able to do a biopsy if he doesn't do the osteotomy, so I may never know if there was cancer in my spine (he doesn't think so). He says he usually recommends patients donate their own blood in advance of surgery, but in my case it's not a good idea because of the cancer. Apparently, they also usually recycle a patient's own blood during surgery, and I won't be able to do that, either. So I'll need a big blood transfusion.
I told him I was going for a third opinion from Dr. Third in Mississauga, and he agreed that was a good idea and assured me that Dr. Third is very skilled at this, as well. So I know I've found the right doctors for the job.
The idea that I might be able to get my upper back straightened out -- for pain reasons and cosmetic reasons -- lifted my spirits. But I know too well that as often as not these procedures fix one thing and screw up something else. Still, I am going to call today and book the MRI for September and the surgery for November. I can always cancel. Dr. Second does not recommend being in a hurry to do the surgery; he wants me to be fully recovered from the cancer treatment, and says if the pain does not impede my lifestyle, I should hesitate. We'll see. At the moment, I still cannot imagine leaning over a desk for any length of time.
In the meantime, I am coughing up a storm and still feeling pretty miserable, though I'm walking better than I was on Sunday. But, based on reports from others, I have concluded that this cough is a result of allergies -- I don't usually get this in the spring, but I sometimes do in August. Once I get a post-nasal drip going, it's not long before it turns into a deep, hacking cough. And my coughs last forever without treatment. I guess I should drag myself to my family doctor.
Pollyanna moment: Diane and Jill took me to the Royal Botanical Gardens on Sunday. I had to be in the wheelchair the whole time, and didn't feel very well, but I really enjoyed the beautiful "Lilac Walk," the largest collection of lilacs in the world. It was peaceful and smelled heavenly.
Sunday, May 31, 2009
Discouraged
Yesterday was a bit of a drag. For more than two weeks, I've spent most of my time lying down, because of the fatigue and weakness (and possibly a virus) brought on by the chemo. Although my back was behaving quite nicely, I was keenly aware that my muscles are rapidly atrophying and I need some exercise. I walked to Gerrard Square Friday morning with my small cart and picked up some things I needed; it didn't hurt, although I was a little tired when I got home, but later in the day my lower back started to ache. Meanwhile, I'd been developing a tight pain in my right shoulder and the side of my neck -- the result of lying around too much, in my opinion -- so between the two pains, by yesterday I could barely move. I literally spent the whole day watching old episodes of Sex and the City on my computer, getting up just a couple of times to try to eat. I can't turn my head at all, and the pain is shooting down my right arm. It's even hard to raise a spoon to my mouth. I also have a hacking cough now.
I'm frustrated: I'm pretty sure lying down for a couple of days will make the lower-back pain go away, but I'm also pretty sure that the more I lie down, the worse my neck pain will become. Anyway, going to bed last night was excruciating -- it's been weeks since that's been true. It was a day when I felt like I simply can't make any headway, healthwise.
But I have decided to go ahead today with a long-planned trip to the Royal Botanical Gardens in Hamilton with Diane and Jill. I'll need the wheelchair, which I haven't done for weeks. Still, it's a beautiful day and I must do something to cheer myself up.
I'm frustrated: I'm pretty sure lying down for a couple of days will make the lower-back pain go away, but I'm also pretty sure that the more I lie down, the worse my neck pain will become. Anyway, going to bed last night was excruciating -- it's been weeks since that's been true. It was a day when I felt like I simply can't make any headway, healthwise.
But I have decided to go ahead today with a long-planned trip to the Royal Botanical Gardens in Hamilton with Diane and Jill. I'll need the wheelchair, which I haven't done for weeks. Still, it's a beautiful day and I must do something to cheer myself up.
Monday, May 25, 2009
Two weeks and counting...
It's been nearly two weeks since the first Docetaxel treatment and I want to say that today I'm starting to feel human again, but I don't want to be premature; I always seem to feel worse in the evening. This morning I did a laundry and hung the clothes on the line and then had to lie down for 20 minutes before I had enough energy to get in the bathtub. I think I'm feeling OK and then I walk up the stairs or around the block and it's like I'm walking through syrup or have 50-pound weights tied to my ankles. I had a fever again two nights ago, and I'm still coughing and have a drippy nose. It's really hard to tell how much of this is chemo-related, how much Neupogen-related and how much is due to some kind of virus I must have picked up, which doesn't seem to get a lot worse or better, just lingers. I can't believe I have to go through two more of these treatments. I can't believe some people do 10 or more.
I'm trying to enjoy the weather, which is my favourite -- sunny and cool. Soon it will be a typical Toronto summer and I'm dreading that. I can honestly use the word "debilitating" when it comes to describing humid weather's effects on me, and they just get worse every year. Aside from the dripping hot flashes, I get dizzy and faint and extremely tired even when I'm not having chemo and radiation, so God knows what this summer will be like. Maybe it's time to buy some of that cheap property in Arizona...
I'm finally catching up to the episodes of Sex and the City in which Samantha has breast cancer treatment. Wondering if I'd have the nerve to go wigless to the Magazine Awards gala.
Pollyanna moments:
I'm trying to enjoy the weather, which is my favourite -- sunny and cool. Soon it will be a typical Toronto summer and I'm dreading that. I can honestly use the word "debilitating" when it comes to describing humid weather's effects on me, and they just get worse every year. Aside from the dripping hot flashes, I get dizzy and faint and extremely tired even when I'm not having chemo and radiation, so God knows what this summer will be like. Maybe it's time to buy some of that cheap property in Arizona...
I'm finally catching up to the episodes of Sex and the City in which Samantha has breast cancer treatment. Wondering if I'd have the nerve to go wigless to the Magazine Awards gala.
Pollyanna moments:
- My 13-year-old nephew came over on Saturday, along with my pal Rosemary, and did some gardening for me while I looked on weakly. I know it was not any 13-year-old boy's idea of a great way to spend a Saturday, and I really appreciated it.
- The lily-of-the-valley are blooming and perfuming my yard and kitchen.
- I heard Jian Ghomeshi play a tune on CBC Radio's Q by a Toronto band called Holy Fuck that perked up a rather bad day for me. It was called "Lovely Allen" and it's electronica music, a genre I don't usually have much of a taste for, but this particular song is cheery and fun and came at me just at a moment when I needed cheering. Here's where you can see them play it on Q. It was fun watching these young guys having fun playing it.
- My neighbour Daryl rang my doorbell the other day while he was mowing his lawn and presented me with a four-leaf clover!
Wednesday, May 20, 2009
Docetaxel no fun
This first round of Docetaxel has proved to be much more difficult than the cocktail I took for my first three chemo cycles. I spent a beautiful holiday weekend lying on the couch and watching bad TV (you've reached a low when a sunny Saturday is taken up with MuchMoreMusic's Top 100 One-hit Wonders of the '80s, which was nevertheless oddly compelling in the mood I was in).
For the first couple of days after my Tuesday infusion, I felt fine, but on Friday I woke up feeling like I'd been hit by a truck. I was very tired and weak. I continue to have a low-level stomach ache and pain in my sternum, with heartburn and alternating constipation and diarrhea. My mouth is dry and numb and stinging, which makes eating less than pleasant, and my lips and nose are very dry and uncomfortable. I've got a phlegmy lump in my throat and I'm coughing a little. My fingertips hurt a lot, especially when I put them in hot water (though I can still type, sort of--what hurts most is blowing my nose) and I'm pretty fearful of losing my nails.
Yesterday I spent a few hours at the hospital getting my blood tested, and it turned out that my white-blood-cell count was very low, so I guess that explains things. I had to get over $1,000 of Neupogen shots (luckily I have drug coverage), to be administered over the following five days by a home-care nurse.
In the meantime, Dr. Lee says I shouldn't have these gastrointestinal symptoms; she suspects I have developed an ulcer. She wants me to stop taking the NSAID I've been on since December, which I'd been thinking of anyway.
After I left the hospital, I walked over to the Eaton Centre and had a bacon cheeseburger, a rarity for me, but even rarer was that amazing sensation of walking to the food court all by myself, mingling with regular people on the street, performing an act that was so normal for me at one time but now seems precious. To move around alone in my city and grab a bite is a big part of what made me feel like an independent human being, I now realize. We'll see if my back remains this good when I stop taking the NSAID.
For the first couple of days after my Tuesday infusion, I felt fine, but on Friday I woke up feeling like I'd been hit by a truck. I was very tired and weak. I continue to have a low-level stomach ache and pain in my sternum, with heartburn and alternating constipation and diarrhea. My mouth is dry and numb and stinging, which makes eating less than pleasant, and my lips and nose are very dry and uncomfortable. I've got a phlegmy lump in my throat and I'm coughing a little. My fingertips hurt a lot, especially when I put them in hot water (though I can still type, sort of--what hurts most is blowing my nose) and I'm pretty fearful of losing my nails.
Yesterday I spent a few hours at the hospital getting my blood tested, and it turned out that my white-blood-cell count was very low, so I guess that explains things. I had to get over $1,000 of Neupogen shots (luckily I have drug coverage), to be administered over the following five days by a home-care nurse.
In the meantime, Dr. Lee says I shouldn't have these gastrointestinal symptoms; she suspects I have developed an ulcer. She wants me to stop taking the NSAID I've been on since December, which I'd been thinking of anyway.
After I left the hospital, I walked over to the Eaton Centre and had a bacon cheeseburger, a rarity for me, but even rarer was that amazing sensation of walking to the food court all by myself, mingling with regular people on the street, performing an act that was so normal for me at one time but now seems precious. To move around alone in my city and grab a bite is a big part of what made me feel like an independent human being, I now realize. We'll see if my back remains this good when I stop taking the NSAID.
Saturday, May 16, 2009
Make 'em laugh
Well, that last post was kind of bleak, I suppose, and this has not been a good couple of days. The side effects of the Docetaxel kicked in yesterday morning -- I feel like my whole body is wrapped in cotton; everything feels a bit numb, including my mouth, and since my left breast and underarm were already numb, I feel pretty strange. I don't have much appetite, I'm very tired, and my chest pain has returned. Going upstairs leaves me out of breath. Typing with a numb right hand is working OK so far -- hope it doesn't get more numb.
But worse, my family is dealing with a crisis in my dad's illness and its effects on my poor mom -- it's not pretty, and we all feel very sad.
So -- to bring up the mood, I'll post something funny: the results of noodling around on an anagram generator a few years ago. Here's what happens when you scramble my name:
Anagrams for Cynthia Brouse
But worse, my family is dealing with a crisis in my dad's illness and its effects on my poor mom -- it's not pretty, and we all feel very sad.
So -- to bring up the mood, I'll post something funny: the results of noodling around on an anagram generator a few years ago. Here's what happens when you scramble my name:
Anagrams for Cynthia Brouse
- YOUR SANE BITCH
- CUTE HAIRY SNOB
- ONCE HAIRY BUST
- BUSY TRAIN ECHO
- AIRY BUTCH NOSE
- COSY URINE BATH
- TINY SOUR BEACH
- BASTE YOUR CHIN
- BRAINY TOUCHES
- THIS CORNY BEAU
- HORNY CAB SUITE
- BURY CANOE SHIT
- BREATHY COUSIN
- CHEAT YOUR NIBS
- BUSY ANTIC HERO
- THIS RUBY OCEAN
- BOYISH CENTAUR
- CORNISH BEAUTY
Friday, May 15, 2009
Morbid thoughts of a former Girl Guide
This blog is almost the only writing I've been doing, which bothers me; I'm at a stage where I feel I should be doing some more personal writing, writing for myself, dealing with private thoughts that I wouldn't necessarily publish here. I've now been dealing with this cancer situation for four months, and my perspective changes constantly. After a 10-day period of total panic right after the diagnosis, in which I assumed I was about to die, I calmed down and recognized that I may have a few years. Later it was suggested that I could be cured, although the definition of metastatic breast cancer, which is what I have, is that it's incurable.
But the doctors have been so vague about everything, primarily because they don't really know what's happening with my bones. I'm regretting that I didn't have a bone biopsy of my ribs. If there were bone mets, and the chemo worked, will they simply do another CT scan and find that the spots they saw before are gone? Will they wait until after radiation treatment to do the scan?
Because at no time have the doctors been willing to "stage" me. I don't know if I'm a Stage 4 cancer, which is the worst, or what. In the meantime, Dr. Lee says she is doing what's called "pseudo-adjuvant" treatment, which I really don't understand -- she makes it sound like she's treating the cancer as a new one rather than as a recurrence. So I don't know how to plan my life. Will I live to receive my pension? I am assuming it's unlikely, and I must admit that as time passes, I'm getting more used to the idea that I will die in the next five or ten years if not sooner. Will thinking that make it so? These are thoughts that I need to explore.
Although I don't feel great, I don't feel like I'm dying, and I do have a lot of time on my hands to do some of the things that I want to do before winding up my life, things we all say we'll do one day if we have time. Of course, part of that is simply cleaning junk out of the house to make it easier for those who'll have to take care of my household after I'm gone, and also in anticipation of the day when, if I live long enough, I may choose to scale down and move to an apartment. I should be throwing out all those old magazines, and what do I do with that small collection of naughty letters from old lovers? I read a terrific short story in Esquire, I think, some years ago, can't recall the author, about a man dying of AIDS who, after he ended up in hospital, instructed his friends to purge his apartment of sex toys before his mother arrived, a hilarious and touching piece.
I was a Girl Guide and "be prepared" comes naturally to me.
But what other secrets does one want to take to the grave? For me, preparing for death has mostly to do with leaving behind some trace of myself for my niece and nephews, since I have no children, and more important, some traces of my family and the world in which we once lived but which is a mystery to them. I have taped interviews with relatives that I want to convert to digital files and even transcribe (especially important right now are tapes of my dad talking in a way he can't do today because of his dementia); I want to photograph and log items in my house so that whoever cares will know that this tchotchke is something I bought on a trip to the Soviet Union, and that clock belonged to my grandparents, etc. I'm also working on compiling my magazine journalism, and maybe this blog, into a self-published book for the four people in the world who might want to read it one day. And, as I'm sure is true with so many people, all those digital photos are begging to be properly archived and snapshots to be inserted in albums.
My father, especially, inculcated in me the compulsion to log and date things; he never had time to write much, but he was always going around the house secreting little labels of provenance in his terrible handwriting on pieces of furniture, and writing details on the backs of photos. He was very involved with the local museum in Massey. And my mom has painstakingly kept up to date our family details using the Family Tree Maker program on her computer.
I want to write more about my family, but I'm blocked by what secrets I think they should know and what should never be revealed. As a writer of personal journalism and a person who is clearly not very private, the urge to tell all doesn't always seem appropriate. The egotism and self-indulgence inherent in thinking that the world will want to know anything about me when I'm gone is sometimes hard to fathom. I've just finished an interesting novel, The History of Love by Nicole Krauss, in which an elderly man who's lost all connections in his life and who hoards things in his apartment, says, "At the end, all that's left of you are your possessions. Perhaps that's why I've never been able to throw anything away. Perhaps that's why I hoarded the world: with the hope that when I died, the sum total of my things would suggest a life larger than the one I lived." The man turns out to have been a thwarted writer as well, and ends up leaving his words behind in a twist that moves the book along rather entertainingly.
Is it folly to try to prove that my life was larger than the one I actually lived? Will I even have time for any of this preparation? I know that when the worst comes, there'll be more pressing things to do; I've watched my friends who've died, and I know how it goes.
These are the things that are going through my mind. But I'm so lazy and tired that by 5 o'clock every day, after returning emails and doing a little house tidying and blogging and maybe some excercise and chatting with my mom and visiting with friends and eating and taking a bath and resolving whatever medical-treatment-related problems are happening that day, all I really feel like doing is playing solitaire and watching Law & Order.
But the doctors have been so vague about everything, primarily because they don't really know what's happening with my bones. I'm regretting that I didn't have a bone biopsy of my ribs. If there were bone mets, and the chemo worked, will they simply do another CT scan and find that the spots they saw before are gone? Will they wait until after radiation treatment to do the scan?
Because at no time have the doctors been willing to "stage" me. I don't know if I'm a Stage 4 cancer, which is the worst, or what. In the meantime, Dr. Lee says she is doing what's called "pseudo-adjuvant" treatment, which I really don't understand -- she makes it sound like she's treating the cancer as a new one rather than as a recurrence. So I don't know how to plan my life. Will I live to receive my pension? I am assuming it's unlikely, and I must admit that as time passes, I'm getting more used to the idea that I will die in the next five or ten years if not sooner. Will thinking that make it so? These are thoughts that I need to explore.
Although I don't feel great, I don't feel like I'm dying, and I do have a lot of time on my hands to do some of the things that I want to do before winding up my life, things we all say we'll do one day if we have time. Of course, part of that is simply cleaning junk out of the house to make it easier for those who'll have to take care of my household after I'm gone, and also in anticipation of the day when, if I live long enough, I may choose to scale down and move to an apartment. I should be throwing out all those old magazines, and what do I do with that small collection of naughty letters from old lovers? I read a terrific short story in Esquire, I think, some years ago, can't recall the author, about a man dying of AIDS who, after he ended up in hospital, instructed his friends to purge his apartment of sex toys before his mother arrived, a hilarious and touching piece.
I was a Girl Guide and "be prepared" comes naturally to me.
But what other secrets does one want to take to the grave? For me, preparing for death has mostly to do with leaving behind some trace of myself for my niece and nephews, since I have no children, and more important, some traces of my family and the world in which we once lived but which is a mystery to them. I have taped interviews with relatives that I want to convert to digital files and even transcribe (especially important right now are tapes of my dad talking in a way he can't do today because of his dementia); I want to photograph and log items in my house so that whoever cares will know that this tchotchke is something I bought on a trip to the Soviet Union, and that clock belonged to my grandparents, etc. I'm also working on compiling my magazine journalism, and maybe this blog, into a self-published book for the four people in the world who might want to read it one day. And, as I'm sure is true with so many people, all those digital photos are begging to be properly archived and snapshots to be inserted in albums.
My father, especially, inculcated in me the compulsion to log and date things; he never had time to write much, but he was always going around the house secreting little labels of provenance in his terrible handwriting on pieces of furniture, and writing details on the backs of photos. He was very involved with the local museum in Massey. And my mom has painstakingly kept up to date our family details using the Family Tree Maker program on her computer.
I want to write more about my family, but I'm blocked by what secrets I think they should know and what should never be revealed. As a writer of personal journalism and a person who is clearly not very private, the urge to tell all doesn't always seem appropriate. The egotism and self-indulgence inherent in thinking that the world will want to know anything about me when I'm gone is sometimes hard to fathom. I've just finished an interesting novel, The History of Love by Nicole Krauss, in which an elderly man who's lost all connections in his life and who hoards things in his apartment, says, "At the end, all that's left of you are your possessions. Perhaps that's why I've never been able to throw anything away. Perhaps that's why I hoarded the world: with the hope that when I died, the sum total of my things would suggest a life larger than the one I lived." The man turns out to have been a thwarted writer as well, and ends up leaving his words behind in a twist that moves the book along rather entertainingly.
Is it folly to try to prove that my life was larger than the one I actually lived? Will I even have time for any of this preparation? I know that when the worst comes, there'll be more pressing things to do; I've watched my friends who've died, and I know how it goes.
These are the things that are going through my mind. But I'm so lazy and tired that by 5 o'clock every day, after returning emails and doing a little house tidying and blogging and maybe some excercise and chatting with my mom and visiting with friends and eating and taking a bath and resolving whatever medical-treatment-related problems are happening that day, all I really feel like doing is playing solitaire and watching Law & Order.
Thursday, May 14, 2009
Pollyanna spring
Pollyanna moments:
- My backyard excuse for a tiny lawn has been entirely taken over by wild violets and forget-me-nots, which means it's a mess later in the summer, but right now it's a ravishing meadow of blooms, along with bleeding hearts, wild silver-dollar plants with their purple flowers and what's left of the tulips that the squirrels didn't behead. My upper back was really hurting yesterday afternoon, and after trying to read lying down with much discomfort, I settled into a comfy, saggy lawn chair in the yard and finished my book club selection in the late-afternoon sunshine, my SPF-treated sunhat slouched over my face. My little patch of heaven did wonders to distract me from the back pain (as did the later ingestion of a couple of codeine pills), and the fact that, in spite of the reason, I can lounge in my backyard in the sun on a Wednesday afternoon. I took some photos this morning; it's raining out now, but the light is better for colour.
- My old pal Julia popped by this morning with fresh homemade bread! So much for the low-carb diet...it's yummy.
Wednesday, May 13, 2009
So far so good
I had my first injection of Docetaxel yesterday. I had to begin taking the steroids the day before, so I haven't been sleeping so well, but at least I'm not as tired as I was. I was a little nervous going in because a small number of patients have a bad reaction to the drug within the first 10 minutes of the drip, involving difficulty breathing and flushed skin. I didn't experience any weird feelings, although my face is bright red, but that seems to be a result of the steroids. My face doesn't feel hot or sweaty (except when I have my regular every-45-minutes hot flash), I just look like a beet.
During the infusion, which took an hour and a half (though the whole visit takes about six hours, because you have to have bloodwork first and then wait for results and then wait for the chemo drugs to come up from the pharmacy), I stuck my fingers in ice packs to try to prevent the drug from reaching my nails. Melting fingernails is one side effect of Docetaxel. I don't think the ice packs were very effective -- they melted too quickly and the cold didn't transmit through the provided cover very well.
My blood tests were good except for that alkaline phosphatase bone-mets indicator, which still hovers around a high level. But the doctor insists that she sees this often during chemo and doesn't seem worried. In any case, I had no bad liver-enzyme levels, which is the most important thing, I think. If we can just keep the cancer out of my vital organs, I'll live a while longer.
I told the oncologist how much discomfort I have in my left armpit and left breast -- in fact, without getting too graphic and personal, the skin sometimes resembles photos I've seen of inflammatory breast cancer, which is a bad thing. She took a look and said she thinks it's just the after-effects of the surgery, primarily nerve damage. But she mumbled something that I took to mean, "We're in the middle of treating you, so we'll worry about what's happening when we're done; either the chemo and radiation will help or they won't."
I didn't feel too bad last night -- not much nausea and no bad taste in my mouth -- and I feel pretty good this morning. So now I'm awaiting whatever is to come, muscle aches being the most common side effect, perhaps by Friday. I told my oncologist that I want to attend the National Magazine Awards gala on June 5, just three days after my next injection, and she suggested postponing the treatment to the following week without my even asking. I have done so, but I'm going to carefully monitor how I feel in the next three days. If it's not too bad, then maybe I'll go back to the regular schedule -- don't want to compromise my treatment if it's not necessary. Of course, the second round may be worse than the first, as effects can be cumulative.
Pollyanna moments:
Although I'm a little embarrassed at accepting friends' offers to be my "chemo buddies," because I could certainly get myself to the hospital and back in a cab or even on public transit, and I could certainly sit in a chair for six hours and get an injection accompanied by a book or my iPod, I must admit I still feel so much better with a friend there. Even though the Medical Day Care department at my hospital and its staff are completely familiar to me now, it's easy to get depressed and frightened in that setting if you have nothing to distract you. Somehow the treatment brings home in a concrete way what's really going on, thoughts you can often ignore when you're going about your business at home. My chatty friends do the trick superbly, and I'm so grateful for their company. I don't think it can be very cheering for them to be there, either, and I think it's brave of them to join me.
During the infusion, which took an hour and a half (though the whole visit takes about six hours, because you have to have bloodwork first and then wait for results and then wait for the chemo drugs to come up from the pharmacy), I stuck my fingers in ice packs to try to prevent the drug from reaching my nails. Melting fingernails is one side effect of Docetaxel. I don't think the ice packs were very effective -- they melted too quickly and the cold didn't transmit through the provided cover very well.
My blood tests were good except for that alkaline phosphatase bone-mets indicator, which still hovers around a high level. But the doctor insists that she sees this often during chemo and doesn't seem worried. In any case, I had no bad liver-enzyme levels, which is the most important thing, I think. If we can just keep the cancer out of my vital organs, I'll live a while longer.
I told the oncologist how much discomfort I have in my left armpit and left breast -- in fact, without getting too graphic and personal, the skin sometimes resembles photos I've seen of inflammatory breast cancer, which is a bad thing. She took a look and said she thinks it's just the after-effects of the surgery, primarily nerve damage. But she mumbled something that I took to mean, "We're in the middle of treating you, so we'll worry about what's happening when we're done; either the chemo and radiation will help or they won't."
I didn't feel too bad last night -- not much nausea and no bad taste in my mouth -- and I feel pretty good this morning. So now I'm awaiting whatever is to come, muscle aches being the most common side effect, perhaps by Friday. I told my oncologist that I want to attend the National Magazine Awards gala on June 5, just three days after my next injection, and she suggested postponing the treatment to the following week without my even asking. I have done so, but I'm going to carefully monitor how I feel in the next three days. If it's not too bad, then maybe I'll go back to the regular schedule -- don't want to compromise my treatment if it's not necessary. Of course, the second round may be worse than the first, as effects can be cumulative.
Pollyanna moments:
Although I'm a little embarrassed at accepting friends' offers to be my "chemo buddies," because I could certainly get myself to the hospital and back in a cab or even on public transit, and I could certainly sit in a chair for six hours and get an injection accompanied by a book or my iPod, I must admit I still feel so much better with a friend there. Even though the Medical Day Care department at my hospital and its staff are completely familiar to me now, it's easy to get depressed and frightened in that setting if you have nothing to distract you. Somehow the treatment brings home in a concrete way what's really going on, thoughts you can often ignore when you're going about your business at home. My chatty friends do the trick superbly, and I'm so grateful for their company. I don't think it can be very cheering for them to be there, either, and I think it's brave of them to join me.
Friday, May 08, 2009
Calm before storm
Am I running out of things to say? I'd rather say nothing than give a daily report that simply says the same thing I said the day before. But no news is good news, healthwise; this past week has been my "good week," when my stomach feels relatively normal and my ability to concentrate is much improved. Mostly I'm just tired and constantly wanting to nap. At least I can nap. And though my back continues to hurt quite a lot, I can get around fairly well, and sit in different kinds of seats without too much difficulty.
But on Tuesday I go back for round four of chemotherapy, this time taking Docetaxel for the first time, so I don't know what to expect. And worse, I have to take double the amount of steroids I was taking with the earlier injections (because I mistakenly took only half the dose then and got away with it). Apparently a minority of patients have a sudden bad reaction to Docetaxel, so the steroids are imperative.
Most of the past week has been taken up with concern over my parents since my dad entered a neurobehavioural unit at a hospital in Kitchener for a temporary stay. He has Lewy Body Dementia, and it's heartbreaking for our family, most of all for my mother.
Pollyanna moment: I got to see my 11-year-old niece sing in the only remaining Kodaly Festival concert in Canada. With nearly 500 other young voices in Kitchener's Centre in the Square, it was lovely to hear. And I could sit in the seat without even a back support!
But on Tuesday I go back for round four of chemotherapy, this time taking Docetaxel for the first time, so I don't know what to expect. And worse, I have to take double the amount of steroids I was taking with the earlier injections (because I mistakenly took only half the dose then and got away with it). Apparently a minority of patients have a sudden bad reaction to Docetaxel, so the steroids are imperative.
Most of the past week has been taken up with concern over my parents since my dad entered a neurobehavioural unit at a hospital in Kitchener for a temporary stay. He has Lewy Body Dementia, and it's heartbreaking for our family, most of all for my mother.
Pollyanna moment: I got to see my 11-year-old niece sing in the only remaining Kodaly Festival concert in Canada. With nearly 500 other young voices in Kitchener's Centre in the Square, it was lovely to hear. And I could sit in the seat without even a back support!
Friday, May 01, 2009
Jane's Walks
One thing I had to turn down this year because of my illness was the opportunity to again co-lead a "Jane's Walk" of my neighbourhood as I did for the walk's first two years. But here's my plug for Jane's Walks, and I urge you to take in one or more this weekend.
Inspired by urban thinker Jane Jacobs, who died in 2006, Jane's Walks are a series of free walking tours of neighbourhoods, led by people who know the area well, in keeping with Jacobs's belief that healthy cities are about getting feet and eyes on the street. Begun in Jacobs's adopted home of Toronto by a band of Jane acolytes armed with little more than a website and email, they have this year branched out to 24 Canadian cities, and are now organized by former CBC journalist Jane Farrow through the offices of the Centre for City Ecology. They're planning to expand the idea worldwide; in fact, a Jane's Walk is happening today in Mumbai, India.
Today's Globe and Mail features an article on the walk in my neighbourhood, "Greenwood-Coxwell: A Neighbourhood of Many Names" (I call it the Gerrard India Bazaar or Little India), which will be led by my friends and neighbours Diane Dyson, manager of planning and research for Woodgreen Community Services (check out her great blog, Building Strong Communities), and Doug Fyfe, a social historian for Toronto city museums. The walk takes place on Sunday (May 3) at 3 p.m. and I guarantee it will be fascinating (plus you can linger afterward for dinner in one of the many great South Asian restaurants on Gerrard Street).
Or check out one of the other walks in your city. If you're in Toronto, you can take in one of over 90 walks that will be offered over the weekend, from "Art Deco Skyscrapers of Downtown Toronto" to "Toronto’s Lost Railway Heritage" to "The Meeting Place: First Nations on Queen" to one called "Places to Bonk on Your Lunch Hour." They're a great way to get to know your city--or even your own neighbourhood. Last year our walk was held in the pouring rain, and Diane and I expected no one to show up. But we had about 30 hardy participants, and it was great fun. This year the weather in Toronto, at least, looks like it will cooperate. And if I'm feeling well, I may well tag along with my wheelchair on Sunday.
Inspired by urban thinker Jane Jacobs, who died in 2006, Jane's Walks are a series of free walking tours of neighbourhoods, led by people who know the area well, in keeping with Jacobs's belief that healthy cities are about getting feet and eyes on the street. Begun in Jacobs's adopted home of Toronto by a band of Jane acolytes armed with little more than a website and email, they have this year branched out to 24 Canadian cities, and are now organized by former CBC journalist Jane Farrow through the offices of the Centre for City Ecology. They're planning to expand the idea worldwide; in fact, a Jane's Walk is happening today in Mumbai, India.
Today's Globe and Mail features an article on the walk in my neighbourhood, "Greenwood-Coxwell: A Neighbourhood of Many Names" (I call it the Gerrard India Bazaar or Little India), which will be led by my friends and neighbours Diane Dyson, manager of planning and research for Woodgreen Community Services (check out her great blog, Building Strong Communities), and Doug Fyfe, a social historian for Toronto city museums. The walk takes place on Sunday (May 3) at 3 p.m. and I guarantee it will be fascinating (plus you can linger afterward for dinner in one of the many great South Asian restaurants on Gerrard Street).
Or check out one of the other walks in your city. If you're in Toronto, you can take in one of over 90 walks that will be offered over the weekend, from "Art Deco Skyscrapers of Downtown Toronto" to "Toronto’s Lost Railway Heritage" to "The Meeting Place: First Nations on Queen" to one called "Places to Bonk on Your Lunch Hour." They're a great way to get to know your city--or even your own neighbourhood. Last year our walk was held in the pouring rain, and Diane and I expected no one to show up. But we had about 30 hardy participants, and it was great fun. This year the weather in Toronto, at least, looks like it will cooperate. And if I'm feeling well, I may well tag along with my wheelchair on Sunday.
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