Yesterday marked eight months since I had surgery on my armpit. And I think it marked the first day that I got definitive word that I have metastatic cancer, not just in my ribs but in my spine. I went to see Dr. Second, the hotshot orthopedic surgeon. He and his resident were very good to me, and, unlike my oncologist, displayed the actual CT scans I brought them and pointed out what has changed. Dr. Second told me back in the winter that he doubted I had cancer in my spine; he thought the evidence showed the vertebral collapse was in keeping with a mechanical problem, namely junctional kyphosis. But now there is sclerosis in the spine -- where my vertebra all looked black-ish on the film, now many of them look white. This, he says, means that there is bone-building going on, probably as a result of chemo and Zometa, which in turn means there was very likely cancer there to start with.
That is what Dr. Lee tried to tell me two weeks ago, but she didn't really make clear to me that she was talking about my spine -- she just read some of the report, which was Greek to me, and didn't show me any pictures. I just assumed the problem was only in the ribs, in any case.
I had a little weep in Dr. Second's office, but afterward I just felt relieved to have some kind of an answer. I guess my visit this Friday with Dr. Lee and the radiologist to review the films will drive it home even more clearly. Dr. Second was quick to add that there is a "good chance" of long-term survival with bone mets, and I have to concentrate on that.
He also implied that I might now require radiation to my bones, so I'm hoping to get an appointment with the radiation oncologist soon. She told me she really didn't think I had cancer in my bones and would not radiate until she had some definitive proof. Perhaps these new films will provide it.
In the meantime, for the past couple of weeks I've had a lot of rib pain; it's keeping me up at night, which is usually a sign of bone mets. It also hurts just under my left rib cage, and I don't know what that is. Lying down and sitting hurt the most; sometimes it hurts when I walk, though seldom enough to stop me from walking. Codeine seems to help, but it also makes me high. Dr. Second says I should stop taking the NSAID Naproxen, which I've had 1,000 mg of daily for about 10 months, because it will damage my kidneys. He says I should take Percocet! I can't imagine regular opioid use can be very good for me in the long term, either, but he seems to think it's preferable to the NSAID. God knows there are thousands of people walking around out there on big-time analgesics because they can't manage otherwise. Will I join their ranks forever?
Still, the question in my mind is: if my bones are actually getting better, why are my ribs hurting so much? Maybe I now know there is indeed cancer in my bones, but I still don't know how much of the pain comes from that and how much from my mechanical problems. It's probably both to some degree. Do I need radiation of my bones? Should I have spinal surgery -- would it make any improvement? Dr. Second warned me not to do it if I don't absolutely need to; there is a risk of paralysis and he's looking at more complex surgery than most fusions involve. He'd have to remove a whole vertebra, he says, partly in order to do a proper biopsy, as well as most of a couple of ribs. He'd fuse two or three vertebra, which means I would be even more inflexible than I am now.
How much pain is too much? I measure everything now against what it was like in the winter when my vertebra was fractured but not yet healed, and I could not walk for more than a minute or two. I guess just being miserable is not enough to warrant surgery, as long as I'm still ambulatory! At least when I couldn't walk I could get some relief when I lay down.
Next stop: the radiation doctor again. This really is turning into a full-time job. I can't believe a handful of people are still reading this blog; the merry-go-round I'm on, and may be on as long as I live, is getting mighty boring. I think it's time to start blogging about something more interesting, like the disintegration of my fingernails or the latest escapades of the raccoons in my backyard or the impact of the internet on daily newspapers ...
Wednesday, September 30, 2009
Sunday, September 27, 2009
Some underused resources
I'm slowly gathering more opinions on whatever the hell is going on with my bones. On Thursday I dropped by the Managing Your Cancer Journey course at Princess Margaret Hospital. I've mentioned it before in this space: it's supposed to be a two-day course on consecutive Thursdays, but because it runs perpetually it almost feels like a sort of drop-in group; when I went to the two parts, there were people there who had been several times before. Yet you can hardly call it a group because barely anybody attends (apparently, said the social worker in charge, no participants had shown up at all the previous two Thursdays). Which is a shame, because it's an opportunity to have some time with Dr. Robert Buckman, the renowned oncologist/author/broadcaster/comedian/atheist. It amazes me that such a busy man takes time most weeks to spend an hour with the group. His c.v. makes you wonder if he's spread a little thin and perhaps more of a star than a doctor, but he sounds very knowledgeable to me, and he's enormously engaging and personable.
Anyway, because there was just one other person there last week, and she's a regular and a volunteer herself, I got to spend an hour discussing my case with Dr. Buckman, without any actual facts and figures in front of us, of course; he had to base his thoughts on what I told him. I learned that it's very common for cancer patients to be told that spots on their scans could be bone metastasis or could be something else, like arthritis. Based on what I told him, he said I probably have bone mets, but that it's true that I may never know. My CT report shows "lytic lesions," which are basically holes in the bone. Buckman says they're usually caused by cancer, though it's possible they're not.
What was confusing about my recent visit with my oncologist, the one I call Dr. Lee, was that the report from my CT scan referred to "worsening sclerosis" in my bone lesions. She fretted that I would be upset by this wording, and was frustrated by the radiologist's choice of language; she tried to explain that "worsening sclerosis" is not a bad thing. Sclerosis, she said, means the lytic lesions are filling in, probably due to the chemo and the Zometa (bone-strengthening injections I've been having). Dr. Buckman confirmed this interpretation, but also confirmed that if the bone is showing signs of being fixed, it means there was cancer there in the first place. And because I never had a bone biopsy, I have no baseline to compare to. Still, he didn't recommend a bone biopsy -- said it's often not conclusive (not to mention extremely painful).
Dr. Buckman was pleased to hear that I'm taking the Zometa, which he says not enough oncologists are using. While it has long been known to rebuild bone, he said it's only in the past five years or so that they've learned it can also attack cancer cells. He added that I'm in really good hands with Dr. Lee, despite her propensity for thinking out loud -- said she was smarter than him.
The best news was that he contradicted the 20% figure I found in an online medical article, and says that 50% of patients with what is referred to as "bone-only" metastasis survive longer than five to seven years.
He also told me that it's worth my taking a hormonal therapy such as Tamoxifen even if my estrogen-receptor sensitivity is as low as 10%.
And he liked my idea of having a radiologist sit down with me and Dr. Lee to explain my scans, which is going to happen on Oct. 2, although apparently the radiologist I connected with deals only with spines and not ribs! Anyway, it's a start.
At a certain point, I'll have to give up on getting an answer, but not before I've exhausted all avenues. Dr. Buckman suggests I not make any big moves like selling my house or quitting my job for another year. Meanwhile, my rib pain has increased, especially when I lie down, and I am swallowing too much codeine (which I like too much). It almost feels like a twisted bowel or something, and along with my swollen breasts and armpit (the scans showed a large seroma, a post-surgical collection of fluid that, according to what I've read, should have been absorbed into my body by now; it's been eight months since the operation) and the numbness and pinching makes me awfully uncomfortable.
Pollyanna moments:
Anyway, because there was just one other person there last week, and she's a regular and a volunteer herself, I got to spend an hour discussing my case with Dr. Buckman, without any actual facts and figures in front of us, of course; he had to base his thoughts on what I told him. I learned that it's very common for cancer patients to be told that spots on their scans could be bone metastasis or could be something else, like arthritis. Based on what I told him, he said I probably have bone mets, but that it's true that I may never know. My CT report shows "lytic lesions," which are basically holes in the bone. Buckman says they're usually caused by cancer, though it's possible they're not.
What was confusing about my recent visit with my oncologist, the one I call Dr. Lee, was that the report from my CT scan referred to "worsening sclerosis" in my bone lesions. She fretted that I would be upset by this wording, and was frustrated by the radiologist's choice of language; she tried to explain that "worsening sclerosis" is not a bad thing. Sclerosis, she said, means the lytic lesions are filling in, probably due to the chemo and the Zometa (bone-strengthening injections I've been having). Dr. Buckman confirmed this interpretation, but also confirmed that if the bone is showing signs of being fixed, it means there was cancer there in the first place. And because I never had a bone biopsy, I have no baseline to compare to. Still, he didn't recommend a bone biopsy -- said it's often not conclusive (not to mention extremely painful).
Dr. Buckman was pleased to hear that I'm taking the Zometa, which he says not enough oncologists are using. While it has long been known to rebuild bone, he said it's only in the past five years or so that they've learned it can also attack cancer cells. He added that I'm in really good hands with Dr. Lee, despite her propensity for thinking out loud -- said she was smarter than him.
The best news was that he contradicted the 20% figure I found in an online medical article, and says that 50% of patients with what is referred to as "bone-only" metastasis survive longer than five to seven years.
He also told me that it's worth my taking a hormonal therapy such as Tamoxifen even if my estrogen-receptor sensitivity is as low as 10%.
And he liked my idea of having a radiologist sit down with me and Dr. Lee to explain my scans, which is going to happen on Oct. 2, although apparently the radiologist I connected with deals only with spines and not ribs! Anyway, it's a start.
At a certain point, I'll have to give up on getting an answer, but not before I've exhausted all avenues. Dr. Buckman suggests I not make any big moves like selling my house or quitting my job for another year. Meanwhile, my rib pain has increased, especially when I lie down, and I am swallowing too much codeine (which I like too much). It almost feels like a twisted bowel or something, and along with my swollen breasts and armpit (the scans showed a large seroma, a post-surgical collection of fluid that, according to what I've read, should have been absorbed into my body by now; it's been eight months since the operation) and the numbness and pinching makes me awfully uncomfortable.
Pollyanna moments:
- Yesterday my brother and his boys invited me to see It Might Get Loud, the film about guitars featuring The Edge, Jimmy Page and Jack White. It was a little long but great fun; Jimmy Page is now an unexpectedly healthy-looking old geezer, with a winning smile, and, as my brother pointed out, it was a hoot to see the worshipful looks on Edge and Jack White's faces as Page cranked out the riffs from "Whole Lotta Love." Sadly, the trailer gives him short shrift.
- On Friday morning, I got on my bicycle for the first time in over a year and drove down to my special spot on Ashbridges Bay. It didn't hurt too much more than it does when I walk, but for the first several minutes it felt weird and disorienting to be going faster than my legs could carry me. It may be my only bike ride of the year, and I'm so glad I went. Lake Ontario is normally quite calm, but on Friday there was enough wind to stir up some mighty surf, and sitting on the rocks getting spray spots on my sunglasses as the sun popped in and out of the clouds like a hyper mole was just heaven. Just me and the lake and some ducks. I don't know how I could ever not live in the east end. And if it weren't for Ashbridges Bay, I doubt I'd have stayed in Toronto this long.
Wednesday, September 23, 2009
The new normal
My mother bought me a subscription to Zoomer magazine, which I'm not overly impressed with (but thanks, Mom). I do read Libby Znaimer from time to time, though, now that we have a cancer connection. Her October column was one I could relate to: she dealt with how different the first experience of cancer is from subsequent occurrences. Going from being told "You're cured" to being happy with "No evidence of metastatic disease" is a leap only those who've experienced it can understand, I suppose. She describes opting not to ring the bell at Princess Margaret Hospital that's used to celebrate finishing a course of chemotherapy. Living with cancer, rather than beating cancer, becomes the new normal. "In my new life," she writes, "as a survivor [a word she admits makes her uncomfortable], there will be no bells, banners or noisy declarations of victory. Every ordinary day is a milestone." Gotta agree with that.
I am experiencing a lot of pain that spreads from my ribs into my abdomen, which I could live with more easily if I understood what causes it. Fingers crossed: I'm hoping to sit down with my oncologist AND a radiologist to review my scans. If my oncologist's secretary, whom I adore, figures out how to set it up.
Pollyanna moments:
I am experiencing a lot of pain that spreads from my ribs into my abdomen, which I could live with more easily if I understood what causes it. Fingers crossed: I'm hoping to sit down with my oncologist AND a radiologist to review my scans. If my oncologist's secretary, whom I adore, figures out how to set it up.
Pollyanna moments:
- I had my eyebrows threaded last Friday -- what a thrill to again possess eyebrows bushy enough to warrant threading! God, it hurts, though it's over quickly. I wish I could watch somebody else getting it done, because I've yet to figure out how it works. The women who do this work simply grab a length of thread, do something weird with it on your sensitive eye area, you scream a little and then it's done.
- I'm actually kind of liking my Judy Dench–style ’do. But even at half an inch long, it's got a powerful wave in it -- although I'm tempted to keep it short-short, it would be interesting to grow it out and see if it's even curlier than it was before. A lot of people say their hair grew back different after chemotherapy.
- I'm cranky because the weather has turned humid and cloudy, but, boy did I love the first three weeks of September -- cool, sunny, just my style.
- I have lost enough weight to wear my rings again.
Thursday, September 17, 2009
It's all relative
More cancer "relativity." I saw my medical oncologist today. First she spent quite a bit of time giving me the results of the CT scan of my body. The good news -- very good news -- is that there is no cancer showing up in any of my vital organs. But the CT report was more doubtful about my bones: previous hot spots that had looked like cancer-caused holes now seem to be filled in, which may mean the chemo or the Zometa has helped, but also means it was cancer.
Then I reminded Dr. Lee that I also had a bone scan a couple of weeks ago, which she had missed; it didn't seem to show anything scary at all! On the other hand, one of the blood markers for cancer suggests there is/was cancer in the bones. On the third hand, the same people who read these films and reported on them did reports on my films from several months ago and completely missed that I had a collapsed vertebra. Which seemed so clear to me when I looked at the films myself, an eight-year-old could have picked it out. Sheesh.
The funny thing is that the doctor who did my bone scan said he would refer to the CT scan to help him judge the bone scan!
In any case, Dr. Lee is very positive about my situation, but she tends to be a Pollyanna and is reluctant to quote any survival statistics or tell me that I will or won't need my pension (and she suggests keeping the porta-cath in "for now"). I think she's worried about creating self-fulfilling prophecies and depression. Her optimism, combined with her propensity for thinking out loud, makes me come away as confused as ever. I have Stage 4 cancer; she agrees it's metastatic. My own Googling shows that only 20 percent of breast cancer patients with bone mets survive more than five years, and I have a couple of factors that could put me in the shorter-lived group (a blood marker called CEA and the fact that I'm mostly estrogen-receptor negative). But there are so many other factors involved that I can't really blame the doctor for being so equivocal. I've forgotten half of what Dr. Lee said; fortunately, she is one of the few doctors I've met who lets me tape our consultations, so I'm going to go over the recording again and see if anything becomes clearer.
So...relative to a year ago, I have an incurable terminal illness and that's still upsetting. Relative to what could have shown up on the scans today, I have every reason to be relieved.
Dr. Lee agreed I should be trying a little harder to lose some weight; her enthusiasm for this plan of action seemed bolstered by the fact that she's been fasting for Ramadan, which, she admitted, was also making her head a little fuzzy! She gave a brief pitch for fasting as my stomach growled. It may be too late when it comes to diet change; my high-carb, high-fat diet over the years probably contributed to my cancer in the first place. And there's a difference between diet leading to a primary cancer and diet affecting a recurrence of cancer. The research on individual types of food is pretty vague, but it seems clear that high calorie intake is associated with cancer, so...can I take this fact seriously long enough to go a day without chocolate? I wouldn't put any serious money on it.
In any case, Dr. Lee wants to take another look at the pathology of my tumours to see if I have enough estrogen-receptor positivity to warrant taking Tamoxifen or some other hormonal therapy again (the two biopsies I've had ranged from 9 percent to 30 percent ER-positive). I'm to continue the monthly Zometa injection to strengthen my bones. When my orthopod does an MRI of my spine, I'll get him to send a copy to Dr. Lee -- maybe it will clarify something. I read in the paper that the Ontario government is going to start paying for PET scans this fall, so maybe I can get one of those. And I'm considering taking all my files and getting another opinion from another medical oncologist (don't know who) or even another radiologist.
When I left the hospital (my friend Liz kindly accompanied me), I did feel relieved because it seemed as though not much had changed; I didn't feel like there was any new, scary thing to adjust to. But when I got home, I realized I hadn't truly adjusted to the old scary thing. During treatment, you really feel like you're putting everything on hold, including fear, predictions, plans. Tonight I feel as though I'm looking this thing in the face for the first time, with a clear head. From today, I am simply living with cancer, a terminal chronic disease. As for dying, a social worker at Princess Margaret who has also had cancer told me, "I'll worry about dying on the last day."
My last bout of cancer was all about denying the situation and changing absolutely nothing about my life, because I liked it just the way it was. That was my gift to myself. Now that my life is in greater jeopardy, and probably because I'm in my 50s and kinda worn out, for the first time I feel like it's time to make serious changes in my life, or at least in my priorities. Not sure what, or how, but life is now going to be about (a) staying alive, (b) enjoying myself, and (c) limiting myself to work I like and that allows me to address the things that matter to me (volunteering, for one).
Meanwhile, I'm taking a break from my anti-inflammatory pills and for the first time in a while my ribs are aching. None of this makes any sense....
Then I reminded Dr. Lee that I also had a bone scan a couple of weeks ago, which she had missed; it didn't seem to show anything scary at all! On the other hand, one of the blood markers for cancer suggests there is/was cancer in the bones. On the third hand, the same people who read these films and reported on them did reports on my films from several months ago and completely missed that I had a collapsed vertebra. Which seemed so clear to me when I looked at the films myself, an eight-year-old could have picked it out. Sheesh.
The funny thing is that the doctor who did my bone scan said he would refer to the CT scan to help him judge the bone scan!
In any case, Dr. Lee is very positive about my situation, but she tends to be a Pollyanna and is reluctant to quote any survival statistics or tell me that I will or won't need my pension (and she suggests keeping the porta-cath in "for now"). I think she's worried about creating self-fulfilling prophecies and depression. Her optimism, combined with her propensity for thinking out loud, makes me come away as confused as ever. I have Stage 4 cancer; she agrees it's metastatic. My own Googling shows that only 20 percent of breast cancer patients with bone mets survive more than five years, and I have a couple of factors that could put me in the shorter-lived group (a blood marker called CEA and the fact that I'm mostly estrogen-receptor negative). But there are so many other factors involved that I can't really blame the doctor for being so equivocal. I've forgotten half of what Dr. Lee said; fortunately, she is one of the few doctors I've met who lets me tape our consultations, so I'm going to go over the recording again and see if anything becomes clearer.
So...relative to a year ago, I have an incurable terminal illness and that's still upsetting. Relative to what could have shown up on the scans today, I have every reason to be relieved.
Dr. Lee agreed I should be trying a little harder to lose some weight; her enthusiasm for this plan of action seemed bolstered by the fact that she's been fasting for Ramadan, which, she admitted, was also making her head a little fuzzy! She gave a brief pitch for fasting as my stomach growled. It may be too late when it comes to diet change; my high-carb, high-fat diet over the years probably contributed to my cancer in the first place. And there's a difference between diet leading to a primary cancer and diet affecting a recurrence of cancer. The research on individual types of food is pretty vague, but it seems clear that high calorie intake is associated with cancer, so...can I take this fact seriously long enough to go a day without chocolate? I wouldn't put any serious money on it.
In any case, Dr. Lee wants to take another look at the pathology of my tumours to see if I have enough estrogen-receptor positivity to warrant taking Tamoxifen or some other hormonal therapy again (the two biopsies I've had ranged from 9 percent to 30 percent ER-positive). I'm to continue the monthly Zometa injection to strengthen my bones. When my orthopod does an MRI of my spine, I'll get him to send a copy to Dr. Lee -- maybe it will clarify something. I read in the paper that the Ontario government is going to start paying for PET scans this fall, so maybe I can get one of those. And I'm considering taking all my files and getting another opinion from another medical oncologist (don't know who) or even another radiologist.
When I left the hospital (my friend Liz kindly accompanied me), I did feel relieved because it seemed as though not much had changed; I didn't feel like there was any new, scary thing to adjust to. But when I got home, I realized I hadn't truly adjusted to the old scary thing. During treatment, you really feel like you're putting everything on hold, including fear, predictions, plans. Tonight I feel as though I'm looking this thing in the face for the first time, with a clear head. From today, I am simply living with cancer, a terminal chronic disease. As for dying, a social worker at Princess Margaret who has also had cancer told me, "I'll worry about dying on the last day."
My last bout of cancer was all about denying the situation and changing absolutely nothing about my life, because I liked it just the way it was. That was my gift to myself. Now that my life is in greater jeopardy, and probably because I'm in my 50s and kinda worn out, for the first time I feel like it's time to make serious changes in my life, or at least in my priorities. Not sure what, or how, but life is now going to be about (a) staying alive, (b) enjoying myself, and (c) limiting myself to work I like and that allows me to address the things that matter to me (volunteering, for one).
Meanwhile, I'm taking a break from my anti-inflammatory pills and for the first time in a while my ribs are aching. None of this makes any sense....
Tuesday, September 15, 2009
Waiting...
I'm in a weird place right now. The treatments are over, but my shoulder blade and ribs started acting up again a couple of days ago, making it hard to sleep. I think my sleep is also disturbed because of other stressors, not the least of which is my upcoming visit to the medical oncologist on Thursday to get my scan results. I'm more nervous than I realized. I'm pretty sure that rather than get really bad news or really good news, I'll just get more inconclusive news. We'll see.
In the meantime, I have decided to use the next while to work on the psychological, social and emotional aspects of having cancer by taking advantage of some of the many workshops and resources that are available to me free of charge as a cancer patient. I've been trying out the first level of the popular "Healing Journey" series, started up by Alastair Cunningham at Princess Margaret Hospital. It's intended to foster "an active response to the crisis of cancer," and deals with relaxation, living in the moment and all that Eckart Tolle stuff. Some of it seems a little airy-fairy, but it's good to get together with others in the same boat, and there is a small study showing that people who've followed the program have lived longer than expected.
I've also signed up for a 10-week program at Mount Sinai Hospital called "Taking Charge," which is about diet and exercise for post-treatment breast cancer patients.
Another perk that's available to me is referral to psychotherapists for three free sessions, which I'd like to try. And there are any number of other workshops and counselling opportunities through the Breast Cancer Survivorship Program at Princess Margaret as well as Wellspring, the network of cancer support centres. For example, I've signed up with the latter for a couple of sessions on returning to work after treatment.
Of course, as someone once said to me, cancer support entails support but it also entails more cancer -- more opportunities to be immersed in a subject you'd like to simply forget. But I think I'm at the stage now where I'm so thoroughly immersed that I just have to learn to swim.
In the meantime, I have decided to use the next while to work on the psychological, social and emotional aspects of having cancer by taking advantage of some of the many workshops and resources that are available to me free of charge as a cancer patient. I've been trying out the first level of the popular "Healing Journey" series, started up by Alastair Cunningham at Princess Margaret Hospital. It's intended to foster "an active response to the crisis of cancer," and deals with relaxation, living in the moment and all that Eckart Tolle stuff. Some of it seems a little airy-fairy, but it's good to get together with others in the same boat, and there is a small study showing that people who've followed the program have lived longer than expected.
I've also signed up for a 10-week program at Mount Sinai Hospital called "Taking Charge," which is about diet and exercise for post-treatment breast cancer patients.
Another perk that's available to me is referral to psychotherapists for three free sessions, which I'd like to try. And there are any number of other workshops and counselling opportunities through the Breast Cancer Survivorship Program at Princess Margaret as well as Wellspring, the network of cancer support centres. For example, I've signed up with the latter for a couple of sessions on returning to work after treatment.
Of course, as someone once said to me, cancer support entails support but it also entails more cancer -- more opportunities to be immersed in a subject you'd like to simply forget. But I think I'm at the stage now where I'm so thoroughly immersed that I just have to learn to swim.
Monday, September 14, 2009
Walking for Terry, June and me
Yesterday the Terry Fox Walk /Run took place, and I participated down in the Beaches, along Ashbridge's Bay. I accompanied my neighbour Daryl and his family and some friends and neighbours to honour his wife, June, who died of lung cancer last year, and had walked in every Terry Fox walk but one since its inception. And to honour me, several members of my family came along: Mom, brothers, sisters-in-law and my niece and three nephews.
The night before, my shoulder blade started acting up again, for the first time in six weeks or so, and I slept only about two hours after taking codeine. So I was pretty dopey for the walk, but I managed the 5K I'd planned on, and raised more than $1,700. Here's me at the finish line:
Pollyanna moments:
The night before, my shoulder blade started acting up again, for the first time in six weeks or so, and I slept only about two hours after taking codeine. So I was pretty dopey for the walk, but I managed the 5K I'd planned on, and raised more than $1,700. Here's me at the finish line:
Pollyanna moments:
- We had a nice lunch at my place after the walk and my family brought me a chocolate cake.
- My littlest nephew found a dollar in the sand and put it in a donation box.
- The weather's been lovely.
Thursday, September 10, 2009
Astral zapping
My friend Neil was recently dreading minor surgery to remove a cyst, and, after asking friends to send him good vibes (he called it "astral zapping"), he was told the cyst had shrunk enough to make surgery unnecessary. I suggested I could use some astral zapping, so he sent me this doctored version of a photo he took while I was having radiation treatment:
I had a wonderful Labour Day weekend; my friend Hugh drove me up to Massey, my hometown. The weather was marvellous and we stayed at the B&B of my cousin Cameron McGregor and his partner Tanya Rouleau, called River House (I highly recommend it). It's just outside of town on the Spanish River, which was a real treat for me. I can no longer visit the river where my parents used to live, but not only is River House on an equally beautiful part of the Spanish, but Cameron's parents and grandparents live across the road, so I felt as though I was almost home. It was a bittersweet visit, hard to be there without my mom and dad. I was reminded of how, when I lived there, Massey seemed like a boring small town, but now all I see is how lovely it is, set at the convergence of two rivers. Here's a morning shot:
For the past months, while I went through treatment, I have managed to be pretty upbeat. Even when I felt like crap, the fact that treatment was ongoing allowed me to put fear of dying on hold. This week, the predicted post-treatment funk has set in, and I'm feeling a bit low. Thank goodness for the nice weather.
The small burn on my chest is coming to a head, kind of crunchy and a little infected. I hope it will clear up soon.
I had a wonderful Labour Day weekend; my friend Hugh drove me up to Massey, my hometown. The weather was marvellous and we stayed at the B&B of my cousin Cameron McGregor and his partner Tanya Rouleau, called River House (I highly recommend it). It's just outside of town on the Spanish River, which was a real treat for me. I can no longer visit the river where my parents used to live, but not only is River House on an equally beautiful part of the Spanish, but Cameron's parents and grandparents live across the road, so I felt as though I was almost home. It was a bittersweet visit, hard to be there without my mom and dad. I was reminded of how, when I lived there, Massey seemed like a boring small town, but now all I see is how lovely it is, set at the convergence of two rivers. Here's a morning shot:
For the past months, while I went through treatment, I have managed to be pretty upbeat. Even when I felt like crap, the fact that treatment was ongoing allowed me to put fear of dying on hold. This week, the predicted post-treatment funk has set in, and I'm feeling a bit low. Thank goodness for the nice weather.
The small burn on my chest is coming to a head, kind of crunchy and a little infected. I hope it will clear up soon.
Tuesday, September 01, 2009
I'm done! A bit over-done, even...
I completed my final radiation treatment today -- hurray! I'd intended to make a little ceremony out of tossing my hospital robe, the one that's been saved for me every day in a bag with my name on it at my request, but the housekeeping staff had already put it in the laundry yesterday. I left the hospital and stood on the steps a moment, not sure whether I wanted to jump up and down or have a little cry. So I took myself to the Elephant & Castle and had lunch, including a decadent brownie dessert they make, and told the waiter, who has served me numerous times, that I'd just finished seven months of cancer treatment and was giving myself a treat. (Don't know what excuse I'll use next time I indulge myself there...) He very kindly didn't charge me for the dessert and sent me off with best wishes.
My skin burns will get a little worse before they get better, but the saline compresses seem to be working well. I'll have to make them and use them for the next couple of weeks -- just boiled saltwater and a facecloth.
What's the next step? I'll have a CT scan of my whole trunk on Friday and a bone scan next Tuesday. I get the results on the 17th. Worst-case scenario: the cancer has spread to my liver or lungs. Confusing scenario: I still have spots in my ribs and they still don't know what they are, OR there are no spots on my ribs and maybe they were cancer and were banished by the chemo and radiation. Or not.
Soon I should be having an MRI of the parts of my spine they can see and a visit with Dr. Second.
Today my radiation oncologist agreed with a metaphor that I came up with: if I don't have bone metastasis (but will we ever know?), then what I have is a "regional recurrence" -- regional meaning not in the primary site but in the lymph nodes near it. So, the horse has left the barn, but it's standing quite near the door. It could lie down and go to sleep for a time; it could lie down and die (not likely); or it could go galloping away (which means I'm toast). Until I've had my tests, she'll make no comment on whether I should sell my house, retire, return to work, start spending my savings, plan for the future.
I feel frustrated and don't know how to proceed. In eight months I've gone from being told I had metastatic breast cancer to being told I might not, or at least not really; I've gone from stumbling around for months in shrieking pain with an undiagnosed broken back to walking with some ease. I'm learning to live with permanent numbness and nerve damage to my arm and breast.
We'll see what the scans tell me.
Pollyanna moments:
My skin burns will get a little worse before they get better, but the saline compresses seem to be working well. I'll have to make them and use them for the next couple of weeks -- just boiled saltwater and a facecloth.
What's the next step? I'll have a CT scan of my whole trunk on Friday and a bone scan next Tuesday. I get the results on the 17th. Worst-case scenario: the cancer has spread to my liver or lungs. Confusing scenario: I still have spots in my ribs and they still don't know what they are, OR there are no spots on my ribs and maybe they were cancer and were banished by the chemo and radiation. Or not.
Soon I should be having an MRI of the parts of my spine they can see and a visit with Dr. Second.
Today my radiation oncologist agreed with a metaphor that I came up with: if I don't have bone metastasis (but will we ever know?), then what I have is a "regional recurrence" -- regional meaning not in the primary site but in the lymph nodes near it. So, the horse has left the barn, but it's standing quite near the door. It could lie down and go to sleep for a time; it could lie down and die (not likely); or it could go galloping away (which means I'm toast). Until I've had my tests, she'll make no comment on whether I should sell my house, retire, return to work, start spending my savings, plan for the future.
I feel frustrated and don't know how to proceed. In eight months I've gone from being told I had metastatic breast cancer to being told I might not, or at least not really; I've gone from stumbling around for months in shrieking pain with an undiagnosed broken back to walking with some ease. I'm learning to live with permanent numbness and nerve damage to my arm and breast.
We'll see what the scans tell me.
Pollyanna moments:
- I've signed up to to walk in the Terry Fox Walk/Run in the Beaches on Sunday, September 13. I hope I can manage 5K. Right at the moment walking hurts the least; standing around the house or cooking or washing dishes makes my shoulder burn, and working at a desk makes it REALLY burn. If you'd like to donate to my efforts, here's the link.
- I made myself an omelette this morning using half a dozen organic cherry tomatoes I grew in a container -- first time I've grown tomatoes! They were tasty.
Friday, August 28, 2009
Hair lip
Several years ago, when my brother's boys were little, I was reading them a story as they sat at my feet. One of them stared cherubically up at my face, rapt by the tale -- or so I thought, until he wrinkled his nose and asked, "How come you've got fur on your lip?"
Well, the fur is returning, along with all my other body hair, slowly but surely. I've even had to dig out and dust off the tweezers. It's not all returning evenly, but rather in long, patchy strands. So far, I've got eyebrows where I don't like them but not where I do like them -- I'm still using the eyebrow liner. To my horror, I now have "fur" on my lower lip, in addition to the upper. Meanwhile, the hair on my head seems to be coming in much greyer than it was before. It's still very short, but at least it's covering my scalp.
I have two more radiation treatments to go and then I'm DONE. My skin has reacted much better than it did five years ago, but I'm still doing the saline compresses several times a day; I think they're helping keep the itch and burn to a dull roar. Today I had the technicians show me the complex diagram that illustrates what parts of me are being radiated, and I was surprised to find that they are doing my upper back -- the machine circles around and shoots me from under the table somehow. I panicked for a second because my orthopedic doctor said he wouldn't be able to fuse my spine if it were radiated, but the technician assured me that the beams are avoiding my spine. How that's possible, I don't understand. But now I know why my back feels so itchy.
I've been quite active recently, and walking is pretty easy, though the burning in my upper back is sometimes a bit much. And from time to time, I feel like I'm overdoing it and need to lie down for a while. I'm sleeping quite a lot.
Here's a photo of what I looked like getting radiated five years ago:
Pollyanna moments:
Well, the fur is returning, along with all my other body hair, slowly but surely. I've even had to dig out and dust off the tweezers. It's not all returning evenly, but rather in long, patchy strands. So far, I've got eyebrows where I don't like them but not where I do like them -- I'm still using the eyebrow liner. To my horror, I now have "fur" on my lower lip, in addition to the upper. Meanwhile, the hair on my head seems to be coming in much greyer than it was before. It's still very short, but at least it's covering my scalp.
I have two more radiation treatments to go and then I'm DONE. My skin has reacted much better than it did five years ago, but I'm still doing the saline compresses several times a day; I think they're helping keep the itch and burn to a dull roar. Today I had the technicians show me the complex diagram that illustrates what parts of me are being radiated, and I was surprised to find that they are doing my upper back -- the machine circles around and shoots me from under the table somehow. I panicked for a second because my orthopedic doctor said he wouldn't be able to fuse my spine if it were radiated, but the technician assured me that the beams are avoiding my spine. How that's possible, I don't understand. But now I know why my back feels so itchy.
I've been quite active recently, and walking is pretty easy, though the burning in my upper back is sometimes a bit much. And from time to time, I feel like I'm overdoing it and need to lie down for a while. I'm sleeping quite a lot.
Here's a photo of what I looked like getting radiated five years ago:
Pollyanna moments:
- Wonderful to see some friends from abroad: Joan from Australia and Neil from Vancouver and Manila.
- Took my 12-year-old nephew to the Art Gallery of Ontario; I hadn't been there since the renovation. I was heartbroken at what they've done to Walker Court -- a mishmash of styles -- but liked the wooden gallery overlooking Dundas Street. My nephew loved the chairs.
- Enjoyed the Taste of South Asia festival last weekend, which was handily less than a block away from my house, of course. Sugarcane juice looks like murky green swamp water but it's very tasty.
- Went to see District 9 -- great movie.
Tuesday, August 18, 2009
Green light
Re: yesterday's post. I finally found out that the green beams of light in the radiation room are laser beams intended for positioning. The beam runs up my body and the technicians line it up with the tattoos on my chest -- like drawing a line with a ruler.
Because I hate the idea of wearing a hospital gown for 10 or 15 minutes every day and then tossing it in the hospital laundry, halfway through my treatments one of the technicians said he could put one in a bag with my name on it so that I could reuse it each day. And I chose one that kinda fits. But one of the other technicians wouldn't believe me when I asked for it -- wouldn't even look for it. I persisted and found it the next day.
This is what "interesting" has come to mean in my day! Preserving hospital wash water.
But after my treatment I walked over to the weekly farmer's market outside the Hospital for Sick Children and bought some Ontario raspberries. And took a pile of magazines to Toronto General -- I've exhausted all the waiting-room coffee tables at Princess Margaret. I'm starting to see some shelf space in my house.
My upper back is burning, burning, burning.
Because I hate the idea of wearing a hospital gown for 10 or 15 minutes every day and then tossing it in the hospital laundry, halfway through my treatments one of the technicians said he could put one in a bag with my name on it so that I could reuse it each day. And I chose one that kinda fits. But one of the other technicians wouldn't believe me when I asked for it -- wouldn't even look for it. I persisted and found it the next day.
This is what "interesting" has come to mean in my day! Preserving hospital wash water.
But after my treatment I walked over to the weekly farmer's market outside the Hospital for Sick Children and bought some Ontario raspberries. And took a pile of magazines to Toronto General -- I've exhausted all the waiting-room coffee tables at Princess Margaret. I'm starting to see some shelf space in my house.
My upper back is burning, burning, burning.
Monday, August 17, 2009
Absolutely radiant
For those of you who've never had the pleasure, I'll describe what it's like to have radiation treatment. A typical course for breast cancer is 25 treatments, every weekday for five weeks (statutory holidays excluded). Sometime before the treatments begin, you have a planning session including a CT scan during which they position you on a table and take a bunch of measurements so that they can aim their radiotherapy beams at the right spots. Each treatment has to exactly duplicate the position in the plan.
When I had radiation five years ago, the positioning bit was time-consuming and even painful because my back problems got in the way; they wanted to radiate my breast without catching my armpit, but I'm so inflexible it was hard to do. Not only do they not want to radiate tissue that doesn't need it, but they don't want to preclude the opportunity to radiate it sometime in the future if it becomes necessary. I believe that's because they aren't supposed to radiate the same spot twice in one lifetime. This time around, it's going much more smoothly; when I mentioned this to my radiation oncologist and attributed it to the fact that this time they're radiating my armpit and not my breast, she said no, it was because they are better at it than they were five years ago. She told me with some excitement that my plan had been presented to a board or a committee or something, presumably as an example of something tricky.
They're not just radiating my armpit; they're also doing something called the supraclavicular area, which is between my breast and my neck, as well as a spot on my back. There are lymph nodes there that can develop cancer, which would not be good.
The setup at Princess Margaret Hospital is pretty smooth. I received a little card with a UPC label unique to me, and when I arrive in the department, I stick the card under a scanner until it beeps, which lets the technicians know I'm there -- I never have to speak to a receptionist. A computer screen tells me if my treatment unit is on time or running behind. The modern-looking reception area is equipped with comfy chairs (though they're arranged like an obstacle course), jigsaw puzzles in progress on coffee tables, as well as bins full of partly knitted scarves that knitters can pick up and continue. But the wait is never very long; I'm usually called in within five minutes, by a young technician proffering a robe that's large enough to fit three of me.
After I change, I enter the large radiation room when the "Beam Off" sign is lit up. A huge photo of a tropical beach hangs backlit on the wall. My plan states that I don't use the neck support, so they remove it from the table before I lie down, positioning my tailbone on a ridge in the table, almost the only uncomfortable part of the procedure. Every single day they ask me for my date of birth.
There's a CD player in the room, with a pile of CDs; most often they play some horrendous Muzak-y piano renditions of tunes such as "Babe" by Styx or Whitney Houston's "I Will Always Love You." Once in a while I complain and ask for something better and they put on a Motown CD, but I think some of the technicians prefer instrumental stuff so they can concentrate on what they're doing without distracting lyrics.
Two young and friendly technicians spend about five minutes getting me in the right position, measured down to the millimetre, literally. I remove my left arm from my robe and raise it so that it lies in an arm support and my breast is exposed. During my first appointment, I was tattooed with minuscule black dots on my chest -- so minuscule I had assumed the ones I got five years ago were gone, but apparently they could still see them. They make some more spots on my skin with a Magic Marker. One technician reads out measurements in centimetres and millimetres and the other adjusts me, the table, and other doodads. "Eighty-nine point five," says one; "I agree," says the other. In the dim room, narrow beams of green light crisscross my body -- I don't know what they are. But there's a sign on the wall that warns against looking at the sources of the beams, so I mostly keep my eyes shut. So that the radiation doesn't hit my chin, I have to keep it tilted up, which is the other mildly uncomfortable part.
When they're assured I'm in the right position, the technicians cover me up with my robe or a piece of paper, and say brightly, "Here we go." They leave the room to go to their posts at the computers that direct the beams, where they can see me on a monitor. There's a big round machine above me, and it starts to make whirring noises, moving around me in a circle. A high-pitched whine sounds when the radiation pierces my body, but I feel nothing at all. It takes about five minutes, and then the technicians re-enter the room and help me off the table. That's it. It's about as simple as a normal X-ray, though it's really a kind of particle accelerator, with much, much more power than an X-ray.
There's an easy-to-follow explanation of all this at a U.K. website called Cancerbackup, which I find amusing because in one spot, where they explain that certain types of cancer require the insertion of an internal probe, they use the term "back passage" presumably to mean "anus." Yikes. Anyway, luckily none of my passages, back or front, are being invaded.
Yesterday I was hit with serious fatigue, but it might just be the heat. My skin is starting to get a little rough and sore, but it's not too bad so far. I have 10 treatments left.
Pollyanna moments:
When I had radiation five years ago, the positioning bit was time-consuming and even painful because my back problems got in the way; they wanted to radiate my breast without catching my armpit, but I'm so inflexible it was hard to do. Not only do they not want to radiate tissue that doesn't need it, but they don't want to preclude the opportunity to radiate it sometime in the future if it becomes necessary. I believe that's because they aren't supposed to radiate the same spot twice in one lifetime. This time around, it's going much more smoothly; when I mentioned this to my radiation oncologist and attributed it to the fact that this time they're radiating my armpit and not my breast, she said no, it was because they are better at it than they were five years ago. She told me with some excitement that my plan had been presented to a board or a committee or something, presumably as an example of something tricky.
They're not just radiating my armpit; they're also doing something called the supraclavicular area, which is between my breast and my neck, as well as a spot on my back. There are lymph nodes there that can develop cancer, which would not be good.
The setup at Princess Margaret Hospital is pretty smooth. I received a little card with a UPC label unique to me, and when I arrive in the department, I stick the card under a scanner until it beeps, which lets the technicians know I'm there -- I never have to speak to a receptionist. A computer screen tells me if my treatment unit is on time or running behind. The modern-looking reception area is equipped with comfy chairs (though they're arranged like an obstacle course), jigsaw puzzles in progress on coffee tables, as well as bins full of partly knitted scarves that knitters can pick up and continue. But the wait is never very long; I'm usually called in within five minutes, by a young technician proffering a robe that's large enough to fit three of me.
After I change, I enter the large radiation room when the "Beam Off" sign is lit up. A huge photo of a tropical beach hangs backlit on the wall. My plan states that I don't use the neck support, so they remove it from the table before I lie down, positioning my tailbone on a ridge in the table, almost the only uncomfortable part of the procedure. Every single day they ask me for my date of birth.
There's a CD player in the room, with a pile of CDs; most often they play some horrendous Muzak-y piano renditions of tunes such as "Babe" by Styx or Whitney Houston's "I Will Always Love You." Once in a while I complain and ask for something better and they put on a Motown CD, but I think some of the technicians prefer instrumental stuff so they can concentrate on what they're doing without distracting lyrics.
Two young and friendly technicians spend about five minutes getting me in the right position, measured down to the millimetre, literally. I remove my left arm from my robe and raise it so that it lies in an arm support and my breast is exposed. During my first appointment, I was tattooed with minuscule black dots on my chest -- so minuscule I had assumed the ones I got five years ago were gone, but apparently they could still see them. They make some more spots on my skin with a Magic Marker. One technician reads out measurements in centimetres and millimetres and the other adjusts me, the table, and other doodads. "Eighty-nine point five," says one; "I agree," says the other. In the dim room, narrow beams of green light crisscross my body -- I don't know what they are. But there's a sign on the wall that warns against looking at the sources of the beams, so I mostly keep my eyes shut. So that the radiation doesn't hit my chin, I have to keep it tilted up, which is the other mildly uncomfortable part.
When they're assured I'm in the right position, the technicians cover me up with my robe or a piece of paper, and say brightly, "Here we go." They leave the room to go to their posts at the computers that direct the beams, where they can see me on a monitor. There's a big round machine above me, and it starts to make whirring noises, moving around me in a circle. A high-pitched whine sounds when the radiation pierces my body, but I feel nothing at all. It takes about five minutes, and then the technicians re-enter the room and help me off the table. That's it. It's about as simple as a normal X-ray, though it's really a kind of particle accelerator, with much, much more power than an X-ray.
There's an easy-to-follow explanation of all this at a U.K. website called Cancerbackup, which I find amusing because in one spot, where they explain that certain types of cancer require the insertion of an internal probe, they use the term "back passage" presumably to mean "anus." Yikes. Anyway, luckily none of my passages, back or front, are being invaded.
Yesterday I was hit with serious fatigue, but it might just be the heat. My skin is starting to get a little rough and sore, but it's not too bad so far. I have 10 treatments left.
Pollyanna moments:
- It's like an oven outside, but I've been able to keep my non-air-conditioned house relatively cool by keeping all the doors and windows shut and judiciously using fans.
- I had a birthday cake at my brother Paul's last weekend.
- I was able to spend a long while with my dad on Saturday, and we bopped around his room to Oliver Schroer's fiddle and a bunch of tunes by the Mamas and the Papas.
Sunday, August 09, 2009
Old is the new old
When I was about 17, I worked in a drugstore as a clerk. One day a little girl bought a chocolate bar or something, and her mother said to her, "Pay the lady." I looked around, wondering who she was talking about, and then realized the lady was me. It was a shock to be referred to with a distinctly adult term (disregarding the connotations of the word "lady" for a young feminist, which was a whole other story). A few years later, when I was about 20, a friend my age told me that an older friend of his had referred to me as "an interesting woman," and the putative compliment went unnoticed as I contemplated the fact that I was now a "woman" and not a girl. I think I squirmed a little, but also felt a tad proud, if a bit of an impostor. I may have been all grown up, but I didn't feel it.
Miraculously, I seem to have made it to the age of 52, but in the past few months strangers have taken me to be the mother of three different friends of mine, two of them older than I. And last weekend, someone assumed I was my mother's sister (not a rare occurrence, actually). The next day, I was walking in a park holding my father's hand when a small child on a small bicycle veered toward us, out of control. "Watch out for the old people!" shouted his dad.
I always knew that my mature appearance as a teenager, then an advantage, would eventually turn into a nuisance. In fact, I remember a nurse assuming I was my sister's mother when I wasn't more than 30 and she 25.
But I know that illness has aged me a great deal in the past year. (Please, no reassuring comments: I'm not fishing, just musing about the fascinating, if disheartening or at least bewildering, changes we all go through). And it's not just sagging eyelids and the usual wrinkles, and the middle-aged weight gain (I've actually lost 10 pounds since last year); my missing eyebrows contribute to the senior-citizen look. (At least the whiskers on my chin have disappeared for the time being.) Worse, I think, is the dowager's hump. Which leaves me with the question: should I have the spinal surgery if the pain is not debilitating? Will I be doing it mostly for cosmetic reasons? I have always had a superstitious conviction that any surgery I have in order to look better will lead to some catastrophe.
In the meantime, I have felt better in the past week than I have in a long time. The effects of the chemo have finally left my body (with the exception that my fingernails are looking weirder and weirder), and the effects of the radiation have yet to begin. I'm not out of breath, and my back feels much better again, and I'm able to get around the city independently in a way that makes me rejoice -- haven't taken any codeine in over a week. And the weather continues to be cool and relatively dry.
Pollyanna moments:
Miraculously, I seem to have made it to the age of 52, but in the past few months strangers have taken me to be the mother of three different friends of mine, two of them older than I. And last weekend, someone assumed I was my mother's sister (not a rare occurrence, actually). The next day, I was walking in a park holding my father's hand when a small child on a small bicycle veered toward us, out of control. "Watch out for the old people!" shouted his dad.
I always knew that my mature appearance as a teenager, then an advantage, would eventually turn into a nuisance. In fact, I remember a nurse assuming I was my sister's mother when I wasn't more than 30 and she 25.
But I know that illness has aged me a great deal in the past year. (Please, no reassuring comments: I'm not fishing, just musing about the fascinating, if disheartening or at least bewildering, changes we all go through). And it's not just sagging eyelids and the usual wrinkles, and the middle-aged weight gain (I've actually lost 10 pounds since last year); my missing eyebrows contribute to the senior-citizen look. (At least the whiskers on my chin have disappeared for the time being.) Worse, I think, is the dowager's hump. Which leaves me with the question: should I have the spinal surgery if the pain is not debilitating? Will I be doing it mostly for cosmetic reasons? I have always had a superstitious conviction that any surgery I have in order to look better will lead to some catastrophe.
In the meantime, I have felt better in the past week than I have in a long time. The effects of the chemo have finally left my body (with the exception that my fingernails are looking weirder and weirder), and the effects of the radiation have yet to begin. I'm not out of breath, and my back feels much better again, and I'm able to get around the city independently in a way that makes me rejoice -- haven't taken any codeine in over a week. And the weather continues to be cool and relatively dry.
Pollyanna moments:
- I got to meet oncologist, comedian, writer and famous atheist Dr. Robert Buckman, who leads a cancer support group discussion on Thursday afternoons at Princess Margaret Hospital -- he's a funny and funny-looking man with a real gift for supportive honesty. Though I did feel a chill as I stepped off the elevator to attend the group and realized I was in the palliative care unit where my dear friend Adele stayed for a while toward the end of her life. Surely I was not headed in this direction anytime soon, I thought; I feel so well! But I'm doing a good job of not looking toward the future anymore. It's like a blank to me.
- I attended the final presentation of the weeklong children's circus camp at the Centre of Gravity circus training studio around the corner from my house. It was a hoot to see little kids on the trapeze, etc., including a certain young Natalie.
- Stratford was a wonderful break, especially the Shakespeare Gardens, a picnic with friends and my mom on the Avon River, Colm Feore's wonderful Cyrano, and the muscular dancing in West Side Story. Also had a great picnic with my mom and dad in Waterloo Park in Waterloo, a lovely place I hadn't visited before.
- Yesterday I got a huge laugh watching a squirrel running up a tree with a whole slice of pizza in his mouth.
Friday, July 31, 2009
Nuke that armpit
Just finished radiation treatment number 4 (of 25). It’s going much more smoothly than I remember it going five years ago. I’m in and out in 15 minutes; so far no waiting. Last time I recall a lot of difficulty positioning me on the table, perhaps because they were doing a different part of my body, my breast. Because of my stiff spine, I believe the technicians had trouble aiming the radiation beam at my breast from the side without catching my underarm. As it was, they did manage to fry a little of the surface of my armpit (hence the current lack of hair follicles and sweat glands there). Considering that now the problem is in my underarm, maybe it would have been just as well if they had fried it. Anyway, maybe doing the armpit is easier, because so far the treatments are as simple as ordering a cup of tea. It is a little uncomfortable having to hold still in one position with my head tilted up, but it’s not for more than about 7 minutes. Meanwhile, I visualize a beam of pink energy zapping cancer cells and shredding them to atoms. A lot of good that did me five years ago, but I guess it beats lying there and thinking about the garbage strike or Iran or my dad’s health.
The people who give me the treatments are very cheerful young men and women, with the emphasis on young. They look like they just had their high school proms last week. I know I’m being bombarded with green laser-like beams that make the whole room look like Star Trek – I know because last time around a friend came into the treatment room with me and convinced me that the setup was bizarre-looking enough to warrant taking photos. Eager to do anything that would make us laugh, I agreed, and I have a whole roll of pictures taken with a LOMO camera of my half-naked body crisscrossed with green lines. Later one of my brothers took some photos, too; I apologized in case he felt embarrassed seeing my surgery-ravaged body. “I’ve seen worse scars on some strippers,” he said encouragingly.
I have promised myself that I will not pay a visit to a hospital without a load of magazines to place in waiting rooms, with a view to ridding my house of the stacks and stacks of them I’ve hung on to for years. Twenty-five trips to Princess Margaret should make a small dent.
Off to Kitchener to see my dad in his new home and then go to Stratford with Mom to see Cyrano de Bergerac and West Side Story. The shoulder blade pain has now spread to my breast, which aches terribly. Perhaps it’s wishful thinking, but I think I’m a little less out of breath this week, though I have dizzy spells whenever I lie down.
The people who give me the treatments are very cheerful young men and women, with the emphasis on young. They look like they just had their high school proms last week. I know I’m being bombarded with green laser-like beams that make the whole room look like Star Trek – I know because last time around a friend came into the treatment room with me and convinced me that the setup was bizarre-looking enough to warrant taking photos. Eager to do anything that would make us laugh, I agreed, and I have a whole roll of pictures taken with a LOMO camera of my half-naked body crisscrossed with green lines. Later one of my brothers took some photos, too; I apologized in case he felt embarrassed seeing my surgery-ravaged body. “I’ve seen worse scars on some strippers,” he said encouragingly.
I have promised myself that I will not pay a visit to a hospital without a load of magazines to place in waiting rooms, with a view to ridding my house of the stacks and stacks of them I’ve hung on to for years. Twenty-five trips to Princess Margaret should make a small dent.
Off to Kitchener to see my dad in his new home and then go to Stratford with Mom to see Cyrano de Bergerac and West Side Story. The shoulder blade pain has now spread to my breast, which aches terribly. Perhaps it’s wishful thinking, but I think I’m a little less out of breath this week, though I have dizzy spells whenever I lie down.
Saturday, July 25, 2009
Alberta holiday
Nearing the end of my Alberta vacation, I am finally catching up with the blog. There have been many Pollyanna moments; the weather is scorching, but it's pretty dry, so I can manage. It always amazes me that I can put a sopping wet T-shirt on the clothesline in Red Deer and see it dry in an hour, quite unlike in muggy Toronto.
In Edmonton, I stayed with Helen and Mitch, and the highlight, as always, was our lame attempt at singing old Dylan songs and other 60s classics with Mitch on guitar. We probably sounded like three drunken cats, but it was great fun. And while I was there I purchased and finished reading The Book of Negroes by Lawrence Hill. We also went shopping on Whyte Ave.; though I'm not a big shopper anymore, I've found that months of being mostly cooped up in the house has left me aching to browse and put down a few dollars.
Next I took a bus to Calgary and went to stay with Joan and Paul and their now-grownup kids in the foothills near
Bragg Creek. They live in such a relaxing and beautiful spot amid huge conifers and a short walk (which we took several times) from the shallow, rushing Elbow River and its stony shores. While there I celebrated my 52nd birthday; it was a clear, hot day, and Joan and Paul drove me up to Banff, where I had lunch with Moira at the Banff Centre while they hiked. Then, as my birthday gift, we had a short canoe ride on the Bow River, me sitting in the middle like the Queen of the Nile (if the Queen of the Nile wore a fluorescent orange life preserver and a Tilley hat). The contrast between the hot sun and the glacial water was true Alberta. Afterward we had dinner in Canmore, at a restaurant I would recommend, the Rocky Mountain Flatbread Company.
Now I'm in Red Deer with Matt and Keith, where I indulged my shopping bug some more by buying, get this, a Tilley Endurables blouse, and a new Derek Alexander handbag (I am so not a labels person, but I am trying to fit in with the modern ethos -- I am of the generation of working-class girls who would never have thought to mention "who" I'm wearing because it was the "what" and the "where did you get it" that mattered, and I admit I sometimes laugh at my young friends who are so focused on designer names). Last night we waded in Sylvan Lake and ate Big Moo ice cream, and I've had some nice walks near the Red Deer River.
This weekend the children's theatre group of which Matt is artistic director, Treehouse Youth Theatre, has several performances as part of Red Deer's CentreFest street performers festival, so he's busy with that, and I'll head down there today or tomorrow. Other than that I've been playing Boggle and Scrabble and exercising my thoracic duct (laughing) by reading David Sedaris books. And I had a brief visit with an aunt of mine who is languishing, but physically healthy, in a long-term-care facility here in Red Deer -- she has frontal-lobe dementia, can't speak and knows no one. I think she's 71. But when I sang to her -- "Heart of My Heart" and "You Are My Sunshine" -- her eyes got big, she looked me straight in the eye, and she laughed heartily. It was a difficult visit, because I had just got news that my father, her older brother, who has a different form of dementia, is going into long-term care on Monday. He's only 74.
As for my health: the day before I left for Alberta I started having tremendous shoulder blade pain, which I think was stirred up by the lymphatic drainage massage, and I've been living on Tylenol 3s since I got here, sleeping poorly and unable to sit for long periods. Pretty miserable on that score. But I haven't had to take a T3 for the past 24 hours, and the discomfort is settling down to a dull roar, thank goodness. Meanwhile, I can walk pretty well on a flat surface, but the least little hill has me huffing and puffing like a steam train. Is it just being wildly out of shape, or has my heart been damaged by the chemo?
At least I can now taste my food.
In Edmonton, I stayed with Helen and Mitch, and the highlight, as always, was our lame attempt at singing old Dylan songs and other 60s classics with Mitch on guitar. We probably sounded like three drunken cats, but it was great fun. And while I was there I purchased and finished reading The Book of Negroes by Lawrence Hill. We also went shopping on Whyte Ave.; though I'm not a big shopper anymore, I've found that months of being mostly cooped up in the house has left me aching to browse and put down a few dollars.
Next I took a bus to Calgary and went to stay with Joan and Paul and their now-grownup kids in the foothills near
Bragg Creek. They live in such a relaxing and beautiful spot amid huge conifers and a short walk (which we took several times) from the shallow, rushing Elbow River and its stony shores. While there I celebrated my 52nd birthday; it was a clear, hot day, and Joan and Paul drove me up to Banff, where I had lunch with Moira at the Banff Centre while they hiked. Then, as my birthday gift, we had a short canoe ride on the Bow River, me sitting in the middle like the Queen of the Nile (if the Queen of the Nile wore a fluorescent orange life preserver and a Tilley hat). The contrast between the hot sun and the glacial water was true Alberta. Afterward we had dinner in Canmore, at a restaurant I would recommend, the Rocky Mountain Flatbread Company.Now I'm in Red Deer with Matt and Keith, where I indulged my shopping bug some more by buying, get this, a Tilley Endurables blouse, and a new Derek Alexander handbag (I am so not a labels person, but I am trying to fit in with the modern ethos -- I am of the generation of working-class girls who would never have thought to mention "who" I'm wearing because it was the "what" and the "where did you get it" that mattered, and I admit I sometimes laugh at my young friends who are so focused on designer names). Last night we waded in Sylvan Lake and ate Big Moo ice cream, and I've had some nice walks near the Red Deer River.
This weekend the children's theatre group of which Matt is artistic director, Treehouse Youth Theatre, has several performances as part of Red Deer's CentreFest street performers festival, so he's busy with that, and I'll head down there today or tomorrow. Other than that I've been playing Boggle and Scrabble and exercising my thoracic duct (laughing) by reading David Sedaris books. And I had a brief visit with an aunt of mine who is languishing, but physically healthy, in a long-term-care facility here in Red Deer -- she has frontal-lobe dementia, can't speak and knows no one. I think she's 71. But when I sang to her -- "Heart of My Heart" and "You Are My Sunshine" -- her eyes got big, she looked me straight in the eye, and she laughed heartily. It was a difficult visit, because I had just got news that my father, her older brother, who has a different form of dementia, is going into long-term care on Monday. He's only 74.
As for my health: the day before I left for Alberta I started having tremendous shoulder blade pain, which I think was stirred up by the lymphatic drainage massage, and I've been living on Tylenol 3s since I got here, sleeping poorly and unable to sit for long periods. Pretty miserable on that score. But I haven't had to take a T3 for the past 24 hours, and the discomfort is settling down to a dull roar, thank goodness. Meanwhile, I can walk pretty well on a flat surface, but the least little hill has me huffing and puffing like a steam train. Is it just being wildly out of shape, or has my heart been damaged by the chemo?
At least I can now taste my food.
Wednesday, July 15, 2009
Between treatments
Feeling a little crappy today, although my mouth is no longer on fire and my tastebuds are starting to recover. Yesterday I had a lymphatic drainage massage, and my shoulder blade pain went away for a while, but towards evening it started to hurt more than ever and I had to take Tylenol 3s to sleep, which I've never had to do before.
Tomorrow I'm flying to Alberta to visit friends -- and in theory to escape Toronto humidity, but the biggest Pollyanna moments this month so far have been enjoying the un-Toronto-like weather: it continues to be cool and breezy and dry, with lots of warm sunshine. My house (which doesn't have central air but does have good cross-ventilation) is actually chilly at times. I have to laugh at all these weather reporters apologizing for the fact that we're not having hot summer weather -- if it were like this all summer, I'd be a happy camper.
It's a little odd being between treatments. I've linked before to the blog of Dana Jennings, the New York Times writer who has prostate cancer; recently he wrote (here; thanks, Donna) about how scary it can be when you're not having treatment. The lack of attention can make you feel like you're now at the whim of fate, instead of being "fixed."
But I start radiation the day after I return from Alberta: I'll be going in to be zapped every weekday from July 28 to September 1. I've been through it before, so I know what to expect, but this time it's a different part of me (my armpit rather than my breast), and we'll see what havoc the treatment wreaks with my lymphatic system. My recollection of the effects last time involve increasing fatigue as the weeks wore on, and then a couple of weeks lying on the couch holding a saltwater compress to my burned flesh. It was uncomfortable.
Tomorrow I'm flying to Alberta to visit friends -- and in theory to escape Toronto humidity, but the biggest Pollyanna moments this month so far have been enjoying the un-Toronto-like weather: it continues to be cool and breezy and dry, with lots of warm sunshine. My house (which doesn't have central air but does have good cross-ventilation) is actually chilly at times. I have to laugh at all these weather reporters apologizing for the fact that we're not having hot summer weather -- if it were like this all summer, I'd be a happy camper.
It's a little odd being between treatments. I've linked before to the blog of Dana Jennings, the New York Times writer who has prostate cancer; recently he wrote (here; thanks, Donna) about how scary it can be when you're not having treatment. The lack of attention can make you feel like you're now at the whim of fate, instead of being "fixed."
But I start radiation the day after I return from Alberta: I'll be going in to be zapped every weekday from July 28 to September 1. I've been through it before, so I know what to expect, but this time it's a different part of me (my armpit rather than my breast), and we'll see what havoc the treatment wreaks with my lymphatic system. My recollection of the effects last time involve increasing fatigue as the weeks wore on, and then a couple of weeks lying on the couch holding a saltwater compress to my burned flesh. It was uncomfortable.
Wednesday, July 08, 2009
The body electric: Michael Jackson
It's been a week since my final chemo treatment. My mouth is especially irritated, and I'll be glad when that clears up so I can enjoy food again. Perversely, I've been living on junk, looking for powerful flavours my mouth will respond to. That has to stop. Otherwise, I don't feel too bad -- a little tired, but not as shaky as I was a few days ago. Still coughing up a storm. Walked to the grocery store today. Blah, blah.
Yesterday I had a shot of Zometa, the bone-strengthening drug, at the hospital (it might make me feel crappy today), and had some blood tests while I was there. My white-blood-cell count was extremely low despite having had three of five Neupogen shots. I asked the doc whether I should have my blood tested again next week, but she didn't seem concerned. I also mentioned that my heart rate is a bit high (98) and one of the nurses suggested maybe I should have my heart tested again since I've had the heart-harming chemo, but again the doctor seemed uninterested. When I walk fast, my lungs seem to be able to handle it, but I'm still tired and out of breath -- is that my heart?
More interesting than the workings of my boring body: I spent yesterday afternoon watching the Michael Jackson memorial -- what a mass of contradictions and ironies. If I were 20 right now, I would probably have been one of the crying girls, with little control of my emotions despite a fascination with the cultural meaning of celebrity death (I was a mess when John Lennon died in 1980); if I were 45, I would probably be cynically decrying the tastelessness and the media-manipulated celebrity maw and wondering what the need for global mass mourning says about our age and why we're glorifying a very troubled man who didn't call himself "Bad" and "Dangerous" for nothing.
But at this stage in my life, I simply look at all the weeping kids who weren't even born when Thriller came out and the mothers and fathers who travelled to L.A. from afar and I acknowledge that there is so much sadness and pain in the world and such a lack of community that the need to join hands with others when a celebrity dies, metaphorically and in reality, seems understandable, if alarming. It's a tough world out there, and we need socially sanctioned outlets for the grief that we walk with every day. And we need to touch each other and participate in ceremony and seek good in the dark corners of the world. Still, you'd be hard-pressed to name an event that contained within it so much good and dark at once.
The memorial seemed respectful and subdued in some ways; I would love a funeral that combined speeches with musical performances, and I liked that a lot of the music was devotional. I don't have a problem with people commanding a stage at a memorial service, though Usher's self-regard was hard to stomach, with his sunglasses and his "it's all about me" attitude. John Mayer's guitar instrumental on "Human Nature" was a nice idea in theory -- I don't think I could have stood his singing, and the man who did sing the melody line in the background sounded wonderful -- but Mayer didn't seem like much of a guitarist (I don't know his work at all). I admit my eyes got a little damp when Mariah Carey opened with "I'll Be There," though I've never listened to a Mariah Carey performance in my life. Jermaine Jackson singing "Smile" struck a perfect note for a funeral, notwithstanding the image it invoked of its composer, Charlie Chaplin, an earlier social outcast for his supposedly inappropriate romantic choices.
I thought Martin Luther King III's speech was inane -- it's all well and good to go on and on about how his father maintained that we little people should be the best street sweepers and mechanics we can be, but what did that have to do with Michael Jackson? He truly was better at what he did than just about anybody in the world. Was King simply trying to make us feel better about the fact that we aren't as good as Michael was? Weird.
The speech I liked best was Brooke Shields'; because I was featured in a documentary called Fag Hags: Women Who Love Gay Men (hey, I just discovered that the whole thing can be viewed online here), I instantly empathized with the lament of a classic fruit fly who has lost her special friend. That I could relate to.
The ending was moving; was the weeping 11-year-old daughter Paris being used by the family to humanize her bizarre father? Perhaps. But it did the trick. I guess I could have done without it; still, I felt bereft when they took the gold-plated, rose-covered casket out of the building to the subdued instrumental strains of "Man in the Mirror," a song that has always choked me up a little. I wanted to hear Michael sing, but it was entirely appropriate that instead the camera focused on the lonely microphone stand in the empty spotlight. At that point, I didn't mind being manipulated at all.
I tried to purchase an MJ song on iTunes during the "show" to complete my playlist, and the system was jammed. But I completed the transaction an hour later. Life goes on.
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!
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