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'; as someone who 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'; as someone who 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.
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