Monday, January 28, 2008
All is well. I am just spending some time with family and visiting friends. Posting may be sporadic to non-existent until early next week.
If you like, please post a link to your favourite blog in the comments and let me know why it's your fave.
Saturday, January 26, 2008
- I have a weakness for big brown eyes.
- He makes me laugh.
- He laughs at my jokes.
- The values we share.
- He calls me on my ‘meshuggahs’ (a lovely Yiddish word that means something like ‘crazy stuff’).
- He has taught me a whole bunch of nifty Yiddish words.
- His family.
- He’s the smartest person I know.
- He loves me.
- He can show affection (to his family, his friends and to me).
- The cute face he makes when he’s feeling a little sheepish (and the same face I see reflected on my oldest son).
- His unwavering support, throughout the worst and the best of my life as a cancer patient.
- He’s an amazing father.
- He still manages to surprise me, even after almost seventeen years together.
- He chooses good friends.
- He has kept his hair longer, even though it bugs him because I think it’s hot.
- He is a sexy beast (and will be mortified that I wrote this).
- He is beautiful. Inside and out.
- He has shown me that being angry with me and loving me are not mutually exclusive.
- We have fun together.
- He knows me better than anyone (and loves me anyway).
- He is a really good cook.
- He tells me that I’m beautiful.
- He thinks the most casual of clothes are the sexiest.
- He puts up with the fact that I do not drive.
- He is incredibly supportive of my writing.
- He understands that ‘taking care of myself’ can mean yet another ball of wool or a pedicure, even if he doesn’t totally get it.
- The way we can communicate with a glance and a raised eyebrow.
- The way he can wax eloquent about hot sauce.
- I feel like I’m still getting to know him.
- His calves.
- He is very kind.
- He can apologize when he’s wrong.
- He reads.
- He lets me talk to him about knitting (and I talk about knitting a lot).
- He doesn’t knit but he can talk knowledgeably about getting gauge and blocking.
- He has his own interests and his own friends.
- He encourages my separate interests and friendships.
- I can recognize his walk from a distance (and my boys walk the same way).
- He makes writing this list incredibly easy. I’m confident that I could go on for 100 more birthdays.
- I love him more than I can say.
Friday, January 25, 2008
Thursday, January 24, 2008
The South Beach Diet was written by cardiologist, Arthur Agatson, "in order to reverse the myriad of heart and vascular problems that stem from obesity" (p.7). Web MD describes South Beach as "a heart-friendly version of the Atkins Diet."
The premise of the diet is that we feel better and lose weight when our insulin levels are regulated and that the way to do this is by consuming mostly foods with with a lower glycemic index (because I am lazy, I am going to let Wiki fill you in on the details).
The book promises that you will lose eight to thirteen pounds in the first two weeks of the diet (I think the idea is that a quick success will get you motivated), known as Phase 1. And the cover of the edition that I borrowed from the library offered the added bonus, "Lose Belly Fat First!"
Who wouldn't love a diet that offered quick results (although Dr. Agatson is very careful to say that weight loss does slow down in the second phase of the diet, when some previously forbidden foods are reintroduced) and that promised to trim fat from what for many of us (especially those of us who've had babies) is a source of considerable angst? And there is lots in this diet that does make sense.
I know that lean protein makes me feel more full and that, if I get too hungry and let my blood sugar drop, I become a little hysterical (my youngest son is very like me in this. If he gets too hungry, he becomes a little terror. The transformation once he is fed is truly remarkable). I also know that I feel much better when I avoid white sugar.
But I have to say that I am a little leery of a diet that prescribes bacon and eggs for breakfast most mornings and that frowns on whole grain bread (although Agatson does say that whole grains are much better than their refined counterparts).
And I know all to well what a bad idea it can be to try any diet that makes you feel deprived of foods you love.
What I am taking from this diet:
- A good reminder to follow my naturopathic doctor's advice and avoid refined sugar.
- Eat smaller meals and avoid getting too hungry.
- Have snacks with good, healthy proteins.
- Avoid refined carbohydrates (I seldom bother with a bun when I have a burger and I don't have bread with dinner, usually. Avoiding carb-centred snacks, especially when we can't have nuts in the house, is more of a challenge).
I would also love to hear from any of you have successfully (or unsuccessfully) followed the South Beach Diet. What was your experience like? Does the diet work as a long-term lifestyle? Did all the saturated fats send your cholesterol through the roof?
I have been surprised by how much interest my posts on diet have generated. It seems that some of you actually are not bored when I write about what I've been eating.
This week, I made another small change based on setting S.M.A.R.T. goals: I eliminated the bedtime snack and stopped eating two hours before bedtime (food eaten late at night doesn't get burned off and I feel better when I wake up hungry).
Next week, I will eat fish at least once.
Wednesday, January 23, 2008
You can listen to audio clips from each of her albums on her web site. Go check her out (and buy her music. You won't regret it).
Very recently, though, Eve has released a new song, one with a very important message. The following is from her website:
This month marks the launch of my new song "The Streets of Burma." I wrote this song after watching the TV news last fall and seeing the powerful images of monks and nuns in Burma peacefully taking to the streets to protest against the military dictatorship. Their protests were brutally suppressed. Watching these events unfold from half a world away, I was outraged, and concerned for the people of Burma. The TV news has moved on to other, more "exciting" events, but what has happened to the monks and nuns? What has happened to the ordinary citizens in Burma who long for peace and democracy? That's where my song "The Streets of Burma" was born.
And I'm proud to announce that Amnesty International has decided to use the song as part of its campaign to help free U Gambira, one of the monks arrested following the protests. You can listen to and download the song by clicking on the link above left, and you can find out more about the campaign at www.amnesty.ca/streetsofburma/Please support Amnesty International's important work in this area.
The song is lovely and haunting. You can download at the Amnesty site or on Eve's own website (where you can also make make a donation to the Amnesty campaign).
Monday, January 21, 2008
How cool am I? OK, so I don't think I've ever heard of Blogged.com (although I will pay attention to them, now!) and I don't remember submitting my blog to them (although I may well have). And the "Conditions and Diseases" category cracks me up (although I'm pleased to say that you can find me near the top of their Health section, not just in the "Diseases").
"Dear Not Just About Cancer Blog Author,
Our editors recently reviewed your blog and have given it a 9.5 score out of (10). Your blog is currently ranked in the top 3 in the Conditions and Diseases category of Blogged.com. This is quite an achievement!
We evaluated your blog based on the following criteria: Frequency of Updates, Relevance of Content, Site Design, and Writing Style. After carefully reviewing each of these criteria, your site was given its 9.5 score.
Please accept my congratulations on a blog well-done!"
But still. Some people who read lots of blogs reviewed mine and thought it deserved 9.5 out of 10.
I'll accept the compliment, happily.
And that part of me that remains in Mme. Delorme's Grade Four class (Madame Delorme was really tough. And I worshipped her)? That part of me's wondering what happened to the other 0.5.
Saturday, January 19, 2008
I thought it would be difficult to write three pages of longhand every day but, for the last couple of days, my words have spilled over beyond that third page.
Today I wrote four pages.
It's all stream of consciousness and
I have never done anything like this before (and followed, through, anyway).
It's making me happy.
One of the tasks for this week was to make a list of people who have championed my writing throughout my life.
This is my list (in no particular order):
- Each of the teachers (and there were several) who not only praised my writing but pushed me to do more. They went out of their way to give me creative writing assignments that would challenge me and give me the chance to grow as a writer. In particular, Mr. D., my high school drama teacher, was very special. He not only got me to write but encouraged me to apply to to Pearson College and coached me through the whole application and interview process.
- My father, who was one of my very harshest critics but who taught me to value intelligence, reading and the beauty of language.
- My spouse, who is almost always the first person to read this blog before it goes 'live.' His support has been unwavering. He knows me better than anyone and I value his feedback more than I can say.
- My sister, herself an enormously talented writer, who has been one of my most vocal supporters since we were kids. I wrote for her when I was a child and I often still find myself writing with her in mind. Her absolute belief in me has kept me writing when I wanted to stop and helped to push me past my own doubts. Conversations with her continue to be the springboard for much of what I write. Of the two of us, she is the more lyrical writer, a poet who uses language in a way that inspires me.
- And you, the readers of this blog. I started Not Just About Cancer as a place to process my experience with breast cancer and share some it with my friends and family. It has grown into so much more. Whether I know you IRL ('in real life'!) or not, I am so honoured by the fact that you keep coming reading (and that you take the time to provide feedback, through the comments, in person or via email).
Re-reading this, I am reminded why I consider myself to be a lucky person, despite having metastatic breast cancer.
It's good to count one's blessings every once in a while.
Friday, January 18, 2008
Don't you just love scathing movie reviews?
Jeanne, the Assertive Cancer Patient turned me on to a terrific review of the Bucket List by Roger Ebert, who as a veteran movie critic and recent cancer survivor is doubly qualified to review this awful-sounding movie.
And Ebert does not mince words, in panning this flick:
'"The Bucket List" is a movie about two old codgers who are nothing like people, both suffering from cancer that is nothing like cancer, and setting off on adventures that are nothing like possible. I urgently advise hospitals: Do not make the DVD available to your patients; there may be an outbreak of bedpans thrown at TV screens.'
As Jeanne says in her post about the movie review, "Don't see this film but do read Ebert's review."
A second review, of Katherine Heigl's new vehicle, 27 Dresses, also landed in my inbox yesterday. By Ottawa Xpress reviewer Isa Tousignant, it was called, "Dressed Down" and subtitled, "Katherine Heigl loses her charm in chick-flick shit-brick 27 Dresses."
Try saying that ten times, quickly.
Tousignant condemns the movie for it's "complete and utter lack of chemistry between [Heigl] and James Marsden" as well as the "ineptitude of its premise."
The critic concludes by summing up the movie as follows:
'...107 long minutes of insulting, sexist, predictable, morally offensive schlock that made me want to jump off this planet for shame of sharing it with anyone who may find this cute.'
I don't think she liked it very much.
Thursday, January 17, 2008
So take a second and click on through. You don't even have to buy anything (but don't tell anyone I said that, OK?)
Wednesday, January 16, 2008
The third part of my S.M.A.R.T resolutions involves getting my life organized, a subject that tends to make me want to dive for the covers. We have more clutter in our house than anyone I know. Than anyone I have ever visited. There are piles everywhere and one room we can't even go into because there is so much junk. And all too often, we end up buying things (does anyone have any idea what happened to the electric pencil sharpener?) to replace things that have gone missing, only to find them a week later (um...why are there pencil shavings in the bottom of the laundry basket?).
I've had enough (and no, this is not the first time I've said this).
But I have decided, in order to actually get anything done, I need to keep my goals modest. I also need to get a sense of accomplishment, the chance to throw some stuff out and the feeling that we can maintain the order I manage to create (she begins to laugh hysterically at the mere thought of this).
So. My goal for January? Clean out the fridge, freezers and cupboards. I have already done the fridge (Sort of. We still have many, many condiments of uncertain vintage that I was not permitted to throw out). I have fifteen days left and some of those will be slowed down by chemo, which means that next week, I've really got to roll up my sleeves.
I'll let you know how it goes.
Monday, January 14, 2008
I actually signed a little contract to myself (as suggested) by the author, to do the exercises in the book, make an 'artist's date' every week (which could mean just sitting with my knitting) and to write every day.
I am very excited.
And a little scared.
I promise to elaborate more on this in the future, but I'm not ready yet.
Friday, January 11, 2008
On Healthy Eating:
"Example A: Eating Healthy
"Okay, so...I'm supposed to be lowering my salt and eating only lean proteins, got it. And saturated fat is the enemy. And so is dairy. And so are carbs. And what was that about wheat? Oh, not wheat, just gluten? So no gluten, carbs, dairy, fat or salt. And organic? Organic is better for me? So I should order only free-range, organic, non-gluten, non-salt, non-dairy, fat-free items? But then...huh? How is it possible that fruit can be bad for me, I thought... What? Glycemic index? No, I don't know -- HEY, CAN I HAVE THIS GRAPE OR NOT?"
And then, frustrated and fed up, I order a cheeseburger."
This quote from Kristy Sammis in her piece, "Announcing the BlogHer 2008 Good Health-a-Thon"made me laugh out loud, it so closely mirrored my own conundrums (conundra?) when it comes to healthy food choices as a cancer patient with lymphedema (and one whose weight has been creeping up in a most unhealthy way since being diagnosed).
My plan (one I had shared with anyone who would listen) was to "radically overhaul" my diet in the New Year.
But I had no idea, really, what I wanted that to mean or how I was going to go about it.
Then, along came Kristy's post and a huge 'aha' moment, in terms of understanding what I needed to do.
I am having fun researching diets and nutritional theories (I'm currently reading the South Beach Diet, and I'll eventually write a review) but I have decided to be S.M.A.R.T. (specific, measurable, attainable, realistic and timely) and make gradual changes, based on my naturopath's recommendations and guidelines to control lymphedema.
So, for the first couple of weeks of January, I resolved that every day, I would:
- Drink one cup of green tea.
- Add a total of two tablespoons of flax meal to my food (this is usually sprinkled on yogurt or cereal).
- Take all my vitamins at the prescribed times (I am pleased to say that I have done this successfully for the first time since I started to take them).
- Eat one servings of fruit and seven servings of vegetables every day (this is by far the toughest challenge for me. I have managed to do it every day this week, though, and it's getting easier. And it's forcing me to cook more, which is a really good thing).
Next week's goal is to eliminate white sugar from my diet (another tough challenge, but doable), in favour of small amounts of sucanat (cane sugar), stevia, maple syrup and honey.
I will also add a second cup of green tea every day. This does mean (gasp!) that I will have to cut back on coffee even more, so I don't overload on caffeine.
I'd love to start a weight program, do the workout my physio prescribed every day and do hundreds of crunches (OK, so maybe I wouldn't love the crunches).
But I would also love to sit around in my pajamas and surf the internet all day.
I've set a goal for January that will challenge me but not be so overwhelming that I opt for the pajamas.
- I will walk an average of 60 minutes 5 times per week (doing less on treatment weeks and more on my weeks off). I have been doing pretty close to this for a long time, so this goal should be pretty doable.
- I will go to yoga 4 times this month. The session started last Monday and I went, so I am on track to meet this goal.
I'll keep you all posted, my internet peeps, so that you can help keep me honest.
And do tell me what, if any, health and fitness resolutions you have made for 2008.
Thursday, January 10, 2008
Cancerous cells can be treated and eradicated or turn into a cancerous tumour.
A tumour can be zapped with chemo and disappear or it can metastasize.
Once cancer is beaten, a person may be "recovered" or they may have a "recurrence."
But there is only one arrow leading from "metastases" and it points towards "death."
This flow chart really upset me when I saw it (it's in a freakin' cookbook).
And it pissed me off.
Then I went to the National Conference for Young Women Living with Breast Cancer. There were only a handful of us there with metastastic breast cancer (six or seven out of a few hundred, I'd say). But one was a conference organizer. And we all looked pretty damn good
More of us are getting breast cancer. And we're getting it at younger ages. But we are also living longer.
And living well.
My oncologist and I talked about this, yesterday. As I have said before, I've had "spectacular" results with my current treatment regimen. Figuring out next steps, though, is a bit of a guessing game (the following is from breastcancer.org):
Many women can live for years with metastatic cancer that's under control. For these women, living with a diagnosis of metastatic breast cancer is like living with a chronic disease. It can go into remission, be active sometimes and not others, or move quickly. It frequently involves trying one treatment after another, ideally with breaks in between treatments when you feel good. The goal of treatment is to help you feel as well as possible and live a longer life.
No one can tell you how long you will live with metastatic disease. That's because every woman's experience is different. Some women live for more than a decade. Others live for just a few seasons. But new and more effective treatments keep being developed. This means that you may do much better today with metastatic disease than someone who had it only a few years ago.
In this phase of breast cancer, the treatment goal is to extend life as long as possible with the best QUALITY of life possible. This means relieving symptoms and putting cancer into remission with the fewest side effects.
I have already gone from a three week cycle (with one week off from treatment) to a four week cycle (with two weeks off from treatment). Now, my doctor and I are discussing moving to a cycle where I would receive only one treatment (herceptin and vinorelbine) every four weeks.
I have a lot of faith in my oncologist, who says that many women have had success on this kind of cycle but that we have no way of knowing exactly the right amount of chemo to keep my (very aggressive) cancer at bay. We also don't really know the truly long term effects of herceptin (which can potentially be damaging to the heart) because the drug is just too new.
The side effects of the drugs I'm on are relatively mild but I am feeling emotionally and physically ground down by ongoing treatment. Chemotherapy attacks the healthy cells as well as the cancerous ones and my body and soul have been paying the price. My heart leapt at the suggestion that I might get more of a break in the near future.
So there are no easy answers. But the questions I am having to ask are a whole lot more pleasant than ones I thought I might be facing a year ago. And I'm a damned-sight better off than I would have been had all this happened to me even five years ago.
And I do know this: metastasis may lead to death (we are all after all going to face death at some point) but until then I plan to live fully and well.
Wednesday, January 09, 2008
Vinorelbine and Herceptin next week.
And then back to my regular schedule.
We talked for a while about how the importance (and uncertainty) of finding the balance between keeping the cancer at bay (and staying in remission) and giving me the highest quality of life possible. And because we are, in many ways, covering new ground (and cancer treatment is so individual, as is cancer for that matter), there is a bit of guesswork involved in figuring out where that balance lies.
I'll write more tomorrow, when the house is quiet and I'm less tired.
I'll relax completely once I have next week's chemo booked but I am feeling relieved. And I am enjoying the surprise week off from treatment.
And depending on the results of my next CT (set for February 13th), I can look forward to more breaks in the coming months.
Monday, January 07, 2008
My file sat on someone's desk for days.
Everyone's busy blaming each other.
No chemo tomorrow.
Doctor on Wednesday morning.
Chemo scheduled for Thursday.
I have no intention of going to chemo on Thursday.
This is what I am planning to propose to my doctor: Cancel chemo for this week and pick up again next Tuesday. This will put me back on my current schedule (I would miss a week of vinorelbine) and mean that I won't have to re-arrange all my plans for the next several months because someone screwed up.
Yes, I am pissed.
And I have communicated really clearly how I want things to go.
But I don't see the point in yelling at anyone, especially as I need to keep these people on my side in the future.
The way I see it, they owe me one.
And I think they see it that way, too.
I am trying to let go of the stress of not knowing what my doctor will say, taking deep breaths and getting on with my life.
To that end, I went to yoga today.
My mind wandered a fair bit but I was physically there.
Breathing deep, deep breaths and doing what I need to take care of myself.
Friday, January 04, 2008
According to my ongoing chemo cycle, I am due for treatment on January 8th and then again on January 15th. Usually, I am notified when I go for chemo when the next treatments will be, or I receive a letter in the mail advising me of my treatment schedule and any upcoming doctors' appointments.
On the few occasions when I have not received a notice, I have called the women who do the booking and sorted out the schedule with them. Since I had not heard anything by January 2nd (the day the cancer centre re-opened after the holidays), I called first thing to find out when my chemo was and to book an appointment for bloodwork, which I need to have drawn by a nurse, through my Port, within 48 hours prior to treatment (I usually do it on the same day as chemo, a couple of hours before treatment is due to start).
This time, though, I was informed that chemo had not been booked for me and that no "order papers" had been received. I was told to phone the nurse assigned to my oncologist. I did this immediately.
A couple of hours later, I got a call from an extremely stressed out nurse (you know when people are too panicked to really communicate properly or to even listen to the person on the other end of the phone?). She told me that no appointment had been booked for me and that none could be booked until I saw the doctor (this despite the fact that, as I explained, I have had many treatments without seeing the doctor. He and I both agree that I don't need to come in before each treatment, "just to say, 'hi'.") She also said that my oncologist was off that day. She told me they would sort something out and get back to me.
That was Wednesday morning. When I had not heard back this morning, I called again and left a message. My call was not returned.
The earliest that I will hear from the cancer centre will be Monday. I am starting to doubt that I can see the doctor and get bloodwork done in time to be treated next Tuesday, as ought to have been scheduled. And it's certainly going to be a challenge to find someone to come with me at the last minute (the pleasure of company becomes a critical need when I am pumped full of Demerol and too wobbly to get myself home).
And I am trying not to dwell on the fact that the woman who does the booking told me that they are 'fully booked' on the 8th. It may not even be possible to get an appointment for chemo, let alone bloodwork.
I have plans, dammit. And the plans are made based on a schedule that has been pretty consistent for the last few months. I have plans for Monday (what should be the day before treatment) and for Saturday (which is the day I always turn the corner after treatment). And I have plans for what should be my weeks off over the next several months
I hate feeling like I have no control over my life.
And I have decided that I will not give up these activities because someone else screwed up.
And why have I fallen through the cracks? Because the last time I saw my oncologist, it was at a different campus, twenty minutes away from where I usually get treated. The same hospital, the same computer system just a different physical location. Somehow this change in routine was enough to make the cancer centre lose track of me as a patient. And I did it to accommodate the fact that my appointment at my usual location had to be cancelled.
I cannot help but wonder what happens to patients who don't ask questions, don't advocate for themselves and just patiently wait to be told what to do.
Thursday, January 03, 2008
And we won't even be going into my
This life of mine could certainly use some structure and planning (other than the structure provided by the chemotherapy cycle). And having goals that don't involve being a cancer patient feels pretty good, too.
Lisa Stone, one of the founders of BlogHer wrote the following about New Year's resolutions:
As I type, I'm about to embark on my annual dive into New Year's resolutions. Every December since 2001, I've taken time to sit down with a ruler, a pencil and a sheet of paper, to create what one of my sisters and I call The Matrix. Across the top of the page I write the months of the year. Down the left-hand side I draw up the bucketfuls of life I want to live in the coming year. These buckets may change in order, but they're nearly always the same.I have embraced this idea and modified her 'buckets' to create my own categories:
Get organized (my house and my finances).
Let's start with family shall we?
Bearing in mind that all my resolutions need to be S.M.A.R.T. (specific, measurable, attainable, realistic and timely). This is what I resolve for 2008.
- I will go into my older son's classroom at least once a week. This will begin on January 14, when I will start weekly knitting classes for the interested kids in his class (see, it's pretty S.M.A.R.T., right?)
- On the weeks that I don't have chemo I will start sharing pick ups and drop offs for my younger son (to and from school/day care). I will begin with doing at least one pick up and one drop off each week that I am off in January (I know that I am not being terribly specific but this is a bit weather dependent, as I do not drive).
- I will go out with my spouse, at least once a month, starting tonight (OK, so this was already planned but I resolve to plan our date night at the beginning of every month).
- I will help plan at least one family activity every month (because my kids have such disparate interests, we often split up during leisure time. I resolve to make more of an effort to spend time as a foursome.
- I will have my sister and brother in-law over for morning coffee at least one week end morning a month. I will make a plan with my sister when I see her this afternoon.
- I will reinstate Sunday family dinners with my dear friend, DD, beginning January 6th, if she is available.
- I will
spend more time with(oops, not specific enough) call my niece, on Saturday and see if she wants to resume knitting lessons.
Wednesday, January 02, 2008
The holidays were great this year but hectic. And having kids five years apart, with very different personalities and interests presents its own particular challenges.
And I am still recovering from New Year's Eve (but boy did I have fun).
I think I need to come to terms with the fact that longer, more thoughtful posts might be out of the question until my boys are both back in school on January 7th.
Perhaps I'll blog tomorrow about New Year's resolutions (yes, I am making some this year. I haven't in many years but since a) I am permitting myself to think ahead a bit further than a few months at a time and b) this unexpected life I'm living could benefit from some goals and structure). Mine all have to do with taking better care of myself and getting some stuff done.
Kristy, over at BlogHer thinks I need to be more specific. She's right.
Last year my spouse resolved to 'buy better tomatoes and keep all the pencils in the house sharpened." We are definitely eating better tomatoes, having gone organic and local but (and this is despite the acquisition of an electric pencil sharpener) we still have a lot of dull pencils lying around.
I think I need to be more ambitious.
What about you? What have you resolved to do in 2008?