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.
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