Life is Healthy

Showing posts with label chemo. Show all posts

Showing posts with label chemo. Show all posts

small changes

Posted by Aldie at 2:13 PM | 0 comments

My life is a work in progress (some days I feel like there has been more progress than others) and I can never quite escape the urge to make changes as the new year rolls in.

In the past I have I not found sweeping changes to be sustainable. Even my list of monthly changes last year didn't last past June.

However, my pledge to make soup was a huge success and has served me well. In fact, today's lunch was soup (kale, sweet potato and red lentil with home made turkey broth) I made and froze a couple of weeks ago. During a chemo week, when I don't feel much like eating anything, it's a real gift to have something easy to heat up and healthy to eat.

This year, I resolved that it would suit me best to make one new small change every week. And so far, this is working pretty well. I haven't been perfect but the changes are adding up and I do feel like new, healthful habits are being created.

So today, on the eve of the Chinese New Year, it seems fitting to come clean on the blog and go public with my changes. You can all help me stay accountable.

And do let me know if you have made any healthy changes so far in 2011. I realized the other day that I'm far from alone. Over at BlogHer they were talking about taking small steps to get healthy for the entire month of January. How'd I miss that?

Here are my changes so far:

Week 1: Weigh in and record my weight every Monday.

Week 2: Begin doing strength training exercises developed for cancer survivors. I've been doing these on run days and plan to work up to about thirty minutes, three times a week.

Week 3: Drink no more than five alcoholic drinks per week. I've gone over this limit every week so far but not by a lot.

Week 4: Drink more water. My nutrionist recommended drinking as many ounces as half my weight in pounds. This is a lot of water.

Week 5: Meditate every day. Start at five minutes and work my way up to twenty. This is something I have been meaning to do for a while. So far this week, I have meditated twice for ten minutes each time. It's a start.

making the best of it

Posted by Aldie at 4:14 PM | 0 comments

I think I've coped with chemo week much better this time around (thanks in part to some good advice from a friend).

43 things (part three)

Posted by Aldie at 5:35 PM | 0 comments

22. One day, when I was small, my aunt bought me a Buster Bar. Before I could eat it, it fell off the stick. She didn't buy me another one.

23 I had Dilly Bars instead of cake on my birthday this year. I ate two.

24. I also had a beer during the day on my birthday, something I consider very decadent. I usually only do this with my friends L. and K. (otherwise known as Sassymonkey).

25. The day after a social gathering, I spend a lot of time second guessing my behaviour, ~~even when~~ especially when I had a good time.

26. I feel guilty about something several times a day. Only recently did I discover that this is not a universal experience. I'm curious what it's like not to feel guilty.

27. My life in treatment is a constant tension between search for structure and then rebellion against self-imposed structures.

28. I have voted NDP in every provincial and federal election since I was old enough to vote (although I have sometimes done so while holding my nose).

29. This was the first year since 2007 that I didn't go to BlogHer. I'm OK with missing it (I had three great years there. The first was an amazing birthday present, the second I was a speaker and last year, I got to bring my book) but I'm a bit sad, especially since I finally feel like I figured out how to really enjoy the experience. There are lots of folks I would have liked to see (Average Jane and Nonlinear Girl were on a panel together. Whymommy was on a panel about blogs as an agent for change) and there are so many folks with whom I would like to spend more time.

30. When I was a teenager, I had a huge crush on the Cassidy brothers. I especially loved Shaun.

31. I was a hideously self-absorbed and narcissistic thirteen year old. It's amazing that my mother let me live.

living large

Posted by Aldie at 2:04 PM | 0 comments

Chemo typically turns me into a horned, fanged, clawed she-devil for at least one day following treatment. Today is that day.

My head knows the mood will pass but boy am I pissy.

But I'm trying to re-commit to having something vaguely resembling content on this blog, so I thought I'd share a couple of shots taken in a parking lot outside a Sonny's restaurant in South Florida (we'd had lunch that day at my first ever Waffle House. We were on a greasy streak).

We had just come back from a day at Corkscrew Swamp and filled up on ribs and other good fried things and I think I was a little giddy.

Anyway, this car just called to me and I made the boys take photos.

watch me wave my hands around a lot

Posted by Aldie at 10:21 AM | 0 comments

As promised, here is a direct link to the Connected segment on cancer blogging:

http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307

10 in june part one: health

Posted by Aldie at 11:31 AM | 0 comments

The last month has been challenging, as far as my health is concerned. There is nothing seriously wrong with me and as far as the cancer is concerned, I'm in fine shape. Instead, I've been dealing with some unpleasant and uncomfortable digestive issues. Whether this is due to my age or the toll of long term systemic cancer treatment, I don't know. I just know that, by the time I went to see my doctor, I was feeling prettty miserable.

I suspected my gall bladder was the source of the problem but we had the benefit of a recent abdominal CT scan that showed that organ to be fine. My doctor diagnosed me with Gastroesophageal Reflux Disease (or GERD) and instructed me to stop consuming coffee, tea, chocolate or coffee (my immediate response was the somewhat ironic, "I'll die!" She also gave me some medicine.

After a couple of weeks, I do feel very much better. I've only been eating tiny amounts of chocolate and I have had a couple of pints of beer (which didn't seem to bother me). What does turn my innards inside out is coffee, something I find to be fairly tragic. I'm now drinking a mug of Matcha green tea every morning and then, only occasionally having a single mug of half-decaf (and I am coming to accept that this needs to be a pretty occasional thing).

I was feeling pretty bummed out about all of this (haven't I already been through enough?) until one day I was out walking the dogs and I got to thinking. What if I chose to look on this as an opportunity to clean up my diet?

I've also come to realize that fatty foods or eating anything too quickly can give me pain and heatburn. But I should be avoid junk food and mindless eating anyway, so that shouldn't seem like a bad thing.

When life gives you lemons, make lemon water (which also really helps with digestion and I like how it tastes).

Next visit to my doc, I'm going to risk being labelled a hypochondriac and ask to be tested for Celiac's disease (my sister has it, and although I've had the blood test, I know that it can result in false negatives) and also asked to be tested for a stomach bacteria called H. pylori (because a friend just tested positive and really I am a bit of a hypochondriac.

Keeping all those things under consideration, here is the part of my "Ten Things" to do list that addresses health:

1. Make soup twice. I've been having fun on this soup adventure. I've already made chicken soup this month. What surprised me though was that I took a recipe from my nutrionist and altered it significantly to make it more flavourful. On the heels of my made-up cabbage soup from last month, I am displaying a willingness to depart from recipes that I have never been brave enough to do. It pleases me enormously.

2. Do an average of sixty minutes of cardio five times a week (a total of 300 minutes a week).

3. Start the Running Room beginner program and run/walk three times a week. I'm on track and on week two, which means I'm alternating one minute of walking with one minute of running for twenty minutes.

4. Follow the diet prescribed by my nutritionist, while cutting mysellf some slack (ie letting myself have a cookie or a piece of chocolate every day, eating exactly what I want once a week, cutting down on carbs and increasing fruit and especially low sugar veggies). If my approach isn't moderate, it's not sustainable.

I'm putting the strength training on hold in the hopes that July will be a little less busy and my gut will be healed enought that the thought of sit-ups doesn't make me puke (although I'm not sure if this is a real problem or just a dislike of sit-ups).

I'll save the rest of this month's goals for another post. What's on your to-do list for June?

well, hello there

Posted by Aldie at 10:09 AM | 0 comments

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

how it's done

Posted by Aldie at 6:30 AM | 0 comments

Everyone makes mistakes. And sometimes things go wrong that are not anyone's fault but someone has to take responsibility for making things right.

Over the last couple of years, I have come to realize that this is a deeply held value of mine, one I am trying to share with my kids. Mistakes don't necessarily make me angry but I can get ~~royally pissed off~~ profoundly annoyed when anyone - adult or child - tries to shirk responsibility. On the other hand, when people step up, acknowledge their mistakes and make a genuine effort to make things right, my resentment tends to evaporate entirely.

Some examples:

1. A few weeks ago, a received a notice from the Ottawa Public Library that a digital book I had ordered was ready for download. The same day, the library's new web site went live. When I tried to download my book - one I had requested months before - I found that all my requests had been deleted from the library site.

I was extremely disappointed. I immediately (and without much hope) sent an email to the library's tech department. The next day (a Saturday), I received an email informing me that they were aware of the problem and attempting to fix it. I was impressed with the rapid response.

The following Monday, I was sent another email explaining what had happened and that the problem had been fixed and informing me that I would be put to the top of the list for this book.

I was thrilled.

2. Last week end, my family ordered takeout from the Foolish Chicken. We have eaten there many times. Every experience has been extremely positive. This time, however, there was a mistake with our order.

We had ordered a ceasar salad with our family meal. When T. went to pick it up, he was asked if ours was the order with the ceasar salad and had confirmed. When we opened the boxes at home, though, we had a green salad.

I was tempted to let it go (the salad looked just fine to me) but S. had really wanted a ceasar salad, so I called the restaurant. My call was immediately transferred to the owner. He apologized profusely, explained what had happened (an order that was virtually identical - but for the salads - had gone out at the same time) and said that if T. were willing to come back and get the right salad, he would throw in some free dessert.

We were thrilled.

3. As I wrote in yesterday's post, I have asked for and received permission to cancel my chemo and herceptin treatments for April. However, when I arrived at the cancer centre last week, I discovered that my treatment for March had inadvertently been cancelled as well.

I went ahead with my bloodwork while staff attempted to figure out what had happened. Each person with whom I spoke (the staff on reception and the nurse who was trying to contact my doctor) made me feel as though they were working hard to get things sorted. A short while later, the woman who does the chemo bookings (someone I know to be extremely competent and accommodating) came to find me in the waiting room. She admitted, in front of a room full of people, that the mistake had been hers and that she had corrected it.

I was both relieved and impressed.

4. When I had my treatment that afternoon, the nurse administered the vinorelbine (the chemo drug, known in the US as Navelbine) right after the Demerol and Gravol (US readers know this as Dramamine). I promptly fell asleep. I woke up more than an hour later, thinking it would soon be time to go home.

Then the nurse came to hang my Herceptin, which takes ninety minutes.

Since the vino only takes ten minutes, I wanted to know what had been happening while I was sleeping. The nurse (not the same one who'd set up the vino) just shrugged and looked at me like she didn't understand the question.

I was too stoned and tired to push matters but I'm pretty sure that they'd just forgotten about me for a while. No one tried to explain or apologize and I was inordinately annoyed.

Mistakes happen. How we deal with our mistakes is what matters.

pictures big and little

Posted by Aldie at 6:30 AM | 0 comments

I woke up yesterday morning with a sore throat and a headache.

Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.

Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my way (and when you have kids, lots of little bugs pass your way).

I am, literally, sick of it (I've also had benign paroxysmal positional vertigo. That had nothing to do with my immune system and was mostly just an annoyance. And when I realized that I did not have a brain tumour, I was actually kind of amused in a "of course this would happen to me at this point in my life" sort of way. Also, my golden, Emma, had a couple of bouts with geriatric vestibular disease, which I think is basically the same thing).

I need a break from chemo and I'm taking the month of April off. On the day when I would normally be at the cancer centre, I will be travelling home on the train from Toronto with D. (we will have been visiting grandparents, hanging out at the Bat Cave at the Royal Ontario Museum and the Harry Potter Exhibit at the Science Centre).

I'm not losing sight of the bigger picture, though. I have a CT scan today (abdominal and thoracic) and I am worrying about it.

Because I always do.

I'm fretting about my veins and how many times (and where) they'll have to poke me before they can inject the contrast but I'm also anxious about what the pictures will show.

Hopefully, everything will look normal and healthy, except for the scars that cover my liver. Hopefully, I can add this to my least of clean scans. And, hopefully, I can keep going through this routine, with the same results for years to come.

I haven't started to take the clean scans for granted. I doubt that I ever will.

10 things to do in april

Posted by Aldie at 10:53 AM | 0 comments

This month, I actually wrote up my 10 things and posted them over at BlogHer on April 1st. And then, I let chemo and the long Passover/Easter weekend sidetrack me. I seem to be somewhat lacking in motivation on the blogging front these days.

I have lots to say but I don't always feel like saying it.

Perhaps blogging should be on my list of May 'to-do's.

For now, though, here is how I did in March (completed in blue, partially done in green and not even started in purple):

1. Finish re-reading the draft of my novel (carried over from February). I discovered when I reached the end of the document that I had just stopped writing when I'd written the required 50,000 words. The story has no end. And needs some serious editing. That will be a goal for a future month.

2. Organize my clothes and my closet (carried over from February).

3. Graft the toes on the socks I'm knitting for my sister (carried over from February). It barely took an hour to finish these suckers. Should have done it ages ago. Now my sister will have some nice wool socks, just in time for summer.

4. Do an average of 5 hours of cardio exercise every week (Revised from February).Really, this should almost be in blue. I fell short by less than an hour, so I'm pretty pleased with myself.

5. Make soup once. Sweet potato, spinach, red lentil. It was a recipe from my nutrionist (see below) and it was yummy.

6. Spend an average of 10 hours writing per week. I permitted myself to write this in green because I did do some writing in March but I didn't even come close to reaching my goal. I blogged 10 times and wrote in my journal with reasonable consistency but that was pretty much it.

7. Make and keep an appointment with a nutritionist to work out a plan to improve my diet, then follow it. I did do this one and have begun to make some changes to my diet. And, although I fell pretty much completely off the wagon over the long weekend, that was in April so it doesn't count.

8. Get my bike back on the road. It's been tuned up and ridden. When the weather is nice, I am going to continue to make my bike my main form of transportation.

9. Mend/wash/block my hand knit scarves. There are five of them. Three are mine and one is an unfinished present. None of them should take very long and it would give me a tremendous sense of accomplishment. Update: After stepping away from this and considering what I have on my plate, if I get two scarves done, I will be happy. I finished one. Now it needs to be delivered to the recipient.

10. Buy a swimsuit that fits (ugh). I tried on a couple of swimsuits but didn't find any that comfortably fit my long torsoed, plus-sized, one breasted body. I initially thought I would carry this one over to April but have changed my mind. This one's traumatic and will be a longer term project.

So that makes (more or less) 5 finished tasks, 4 partially completed and one not yet begun.

I'm really enjoying this process. I'm getting things done that I might not otherwise. It's gving me a sense of structure and accomplishment.

Here is my list for April:

1. Write a first draft of the short story I've been kicking around (I have a writing buddy now, who's going to give me feedback. I have promised to deliver something for her to read by the end of the month).

2. Spend an average of eight hours writing per week (I'm already behind but it's not too late to catch up).

3. Do strength training at least once a week and continue with the five hours of cardio per week (I am on track with the cardio but have done one set of situps exactly once, so I need to get moving on the strength training).

4. Sort through my clothes (carried over from February and March).

5.Make summer plans for my family.

6. Brush my big (shedding) dog once a week and my smaller (non-shedding, tangling) dog every other day (the little dog has been brushed twice, which is probably twice more than she was groomed in March).

7. Update my Ravelry project page.

8. Finish another scarf.

9. Make soup twice (I have a jambalaya stew in the slow cooker right now).

10. Get a hair cut.

It's not too late to play along!

10 things in march

Posted by Aldie at 10:53 AM | 0 comments

It apppears that I have been afflicted with writers' block and spring fever (it's been unseasonably warm and sunny here in Ottawa). And for a while there, I was recovering from chemo.

Those are the excuses I'm offering up for not writing very much lately.

I do have a bunch of posts percolating, or at least on my "to write" to do list but I thought I would kick off my return with another kind of list - an update for my 10 things for February and the new list for March.

Here's how I did last month (completed in blue, partially done in green and not even started in purple).

1. Sock monkey hat done. The pom pom has already fallen off. Once I sew it back on, I'll take photos.

2. Socks not finished.

3. I made jambalaya and sweet potato soup.

4. I read 6 books, including the Canada Reads ones. And one big doorstop of a book.

5. I averaged closer to 4 hours of cardio per week (short of my goal of 6) but I'm cutting myself some slack because of a cold, travel and bad weather. I think 6 hours was unrealistic and am aiming for 5 hours/week of cardio this month.

6. I think I have 40 pages of my novel left to read. Scary process. I'm fine while I'm reading it but then I'm scared to pick it up again. Have to get over that.

7. I wrote at least a little bit, at least 3 times per week.

8. My clothes remain unorganized. I did do a cull of old towels and sheets, though.

9. I went skating three times! And then the ice melted.

10. I sent the card, with the photo from last summer and the kids' school photos from this year.

So I'd call that 6 completed, 2 partially done and 2 not even started.

It felt pretty good to write that up actually. I did better than I thought I had.

Here's my list for March (I've also posted it over at BlogHer, where you can read what others have set out to do. This is such a fabulous idea, iniated by Denise Taunton, their Community Manager):

1. Finish re-reading the draft of my novel (carried over from February).

2. Organize my clothes and my closet (carried over from February).

3. Graft the toes on the socks I'm knitting for my sister (carried over from February).

4. Do an average of 5 hours of cardio exercise every week (Revised from February. I'm on track, especially since the weather has been so nice).

5. Make soup once.

6. Spend an average of 10 hours writing per week (I have some catching up to do).

7. Make and keep an appointment with a nutritionist to work out a plan to improve my diet, then follow it (My first appointment was yesterday and so far I only have to remember to take my supplements and consume enough potassium. I can do this. My next appointment is on March 22nd).

8. Get my bike back on the road (I rode yesterday and I plan on riding to an appointment today. I've also made an appointment for a tune-up).

9. Mend/wash/block my hand knit scarves. There are five of them. Three are mine and one is an unfinished present. None of them should take very long and it would give me a tremendous sense of accomplishment. Update: After stepping away from this and considering what I have on my plate, if I get two scarves done, I will be happy.

10. Buy a swimsuit that fits (ugh).

You can play, too! What are your goals for this month? Share them in the comments or over at BlogHer (but let me know if you do).

update on 10 for february

Posted by Aldie at 9:41 AM | 0 comments

Last week, I joined a BlogHer Group committed to getting ten things done in February. In the spirit of accountability, here is my progress thus far:

1. Finish sewing the eyes and mouth on D.'s sock monkey hat.

Still to do, but D. has really stepped up the nagging, so I promised him that I would get it done by Friday.

2. Graft the toes on my sister's socks (both these projects have been very, very close to finished for months. It's embarassing).

No progress yet.

3. Make soup twice twice.

I made sweet potato soup with roasted garlic. It was extremely labour intensive (and I made it worse by not paying attention to the directions and, instead of slicing 12 sweet potatoes in half, I sliced them all thinly. It was ridiculous and made every other step ridiculously complicated) but delicious. And I froze some to eat during chemo week. Very pleased with myself.

4. Read 6 books, including Generation X: Tales for an Accelerated Culture, Good to a Fault and The Jade Peony

So far, I've read four books, inclduing Good To A Fault (loved it!) and Generation X (meh). One of the books (Dragonfly in Amber, the second book in Diana Gabaldon's Outlander series) was almost 750 pages long.

5. Average 6 hours of walking every week (I was doing this easily for a long time but have slacked off and I'm feeling it, as are the dogs).

I've decided to change that to 6 hours of cardio (of any kind) per week but I've still only been averaging 4.5 hours.

6. Re-read the first draft of my novel (haven't touched the thing since completing NaNoWriMo).

I've read the first forty pages. It doesn't suck as much as I was worried that it would. In fact, there are some bits I actually liked. I find it exhausting to read, though - not because it's heavy or difficult but because I wrote it. Can any of you relate to that feeling?

7. Write something 3x every week (I have been anxious and procrastinating. I thought that setting the bar low might help).

I wrote, for at least a few minutes, four times last week.

8. Organize my clothes.

Haven't started. Unless you count putting one pair of pants that don't fit anymore (wore them a few weeks ago but couldn't do them up on the week end) where they won't make me feel so pissed off at myself.

9. Go skating (I live steps from the Rideau Canal yet I didn't even make it out once last year).

I went once with my family and twice on my own!

10. Send a card to my Aunt, with the photo we took in the summer.

I really do need to get to this one. It's something I've been wanting to do for some time. I don't know why it keeps getting pushed down the to-do list.

Anyone else have any progress to report?

soup and the missing muse

Posted by Aldie at 9:15 AM | 0 comments

I made three soups in January.

Red lentil and carrot from Cooking with Foods That Fight Cancer

Broccoli cheddar from Looneyspoons: Low-fat food made fun!

Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).

If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the The Eat-Clean Diet Cookbook: Great-Tasting Recipes That Keep You Lean!
A friend gave this one to me. I recall it being time consuming but delicious..

I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.

In fact, I can't seem to bring myself to write much these days.

Maybe, later this week, as I recover from chemo.

Tomorrow is Groundhog Day. And the four year anniversary of my mastectomy.

writing your way through breast cancer

Posted by Aldie at 1:34 PM | 0 comments

It's been two days since chemo, so I feel lousy and have the attention span of a gnat.

It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.

I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).

A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/2010 newsletter about "writing your way through breast cancer." I didn't hesitate, as this is a subject about which I am passionate.

You can read the interview on their web site. I am also please to not that they have listed "Not Done Yet" under the heading "Creative Coping: 10 Publications To Motivate You."

my husband's chest

Posted by Aldie at 11:33 AM | 0 comments

You don't need to tell me how lucky I am.

I have a roof over my head, great medical care and I'm surrounded by people who love me.

And don't think I forget how very lucky I am to be alive at all. Why did I get to go into remission? Why me? I am indeed very fortunate.

But there are times when I do feel sad that I will never put this cancer behind me. I feel the toll ongoing treatment takes on my body and my emotional well being.

So last night I stood in my kitchen, with my head on my husband's chest (we say we were built for each other. My head lands flat on his chest and tucks under his chin). He put his arms around me and we just stood there, breathing together.

He didn't need to say anything. He understood my frustration. Only a few hours before I was finallly feeling sharp and healthy and energized. And then, after chemo, I stood in his arms, feeling sick and more than a little shaky.

He didn't remind me how lucky I am.

But I know it.

aware of the irony

Posted by Aldie at 11:26 AM | 0 comments

Life is funny.

This morning was perfect weather for a bike ride. The sun was out and the temperature climbed to 17C (that's 62.6 in American). It was my first time on the bike in more than a week - since before the plague toppled my family, like a series of dominoes.

It was a fun ride, and I didn't even mind the big hill I have to climb on my way to the hospital. I arrived twenty minutes after I set out, a little sweaty and with my heart pumping. As I locked up and headed into the cancer centre, I noted with pleasure that I hadn't been coughing.

"It feels good to be healthy."

I very nearly said it out loud.

I was suddenly struck by the absurdity of my situation. Here I was, going to get my bloodwork done the day before chemo and thinking about how healthy I am.

Three years ago, at almost exactly this time of year, I learned that my cancer had become metastatic. I don't think I could have imagined this day, when I'd be riding my bike up Smythe Rd. and thinking about how healthy I am.

So, as I was saying at the beginning of this post - life really is pretty funny.

Cross-posted to Mothers With Cancer.

random. out of necessity

Posted by Aldie at 11:06 AM | 0 comments

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

frequent flyer

Posted by Aldie at 11:59 AM | 0 comments

I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).

It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately).

I was surprised, then, when my name was called a few minutes later. I passed the same nurse again, on the way in, and said, "That wasn't an hour."

"We squeezed you onto another team," she replied.

My friend, C. said, "Are you queue jumping?"

I smiled back. "It's the life-time membership."

you can't always get it

Posted by Aldie at 9:08 AM | 0 comments

Mixed results from my appointment with my oncologist yesterday.

First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.

I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.

When I finally saw my doc, he easily agreed to a break in July (which is a good thing because I have non-refundable air tickets and a pre-paid hotel for BlogHer). That went so well that I (without making eye contact) asked for August off as well.

The answer was an unequivocal "No."

I didn't argue with him and I listened patiently as he reminded me that I need to think in terms of a chronic illness that we need to keep treating. I can't really take a (longer) break because we need to keep managing the illness.

I told him that I understood. That I know that the treatment I am on is our first line of defence and that the longer I stay on it, the more chance there is for the second, third, fourth and fifth lines of defence to be developed and improved.

He said, "Well, that makes me feel better. When I saw the note in your chart [that I wanted to ask for two months off], I got a little worried."

I reassured him that I am not planning to bail on treatment, I'm just feeling ground down and fed up.

Dr. G. also reminded me that, "Although, it's great that you have remained with no evidence of disease for so long, there is likely cancer somewhere in your body. Statistically, there is something there." But then he added, "But we don't know enough about Herceptin in the long term. Maybe you're cured. We just can't know."

"Cured." Nice word, that.

And I get it. I really do. And I know that while I was incredibly unlucky to end up with metastatic breast cancer (especially in the liver), I have been fabulously, gloriously fortunate to end up in remission. I know so many other wonderful women (Jeanne and Rebecca, for example) who have had to move to regimens that are harder to tolerate.

I can accept the fact that I will be in treatment for the rest of my life, with only very short and very occasional breaks. I can even make the best of it. And I can feel pretty positive most of the time. I think I am also allowed to get pissed off every once in a while.

On another note, my spouse wants you all to know that the Xmas tree in my back yard is "next winter's firewood." It hasn't been chopped, though. Maybe we are going to have a bonfire in my living room.

the brain of a monkey

Posted by Aldie at 10:33 AM | 0 comments

First:

My spouse and I had the following conversation this morning:

T.: "I had a really hard time falling asleep last night."

Me: "Did you have monkey brain?"

T: "What? Like I couldn't stop thinking about bananas?"

Second:

I woke up feeling kind of bummed out this morning. After coffee, my mood changed dramatically. I actually tweeted, "I think I love coffee the most."

Third:

Speaking of Twitter, a bunch of folks have changed their time zone to Tehran, in order to confuse Iranian censors. I've done it, too, although I am not sure if this really works. And I love the fact Twitter and Facebook are playing a role in helping activists all over the world get the word out. Makes me feel virtuous and less like I am just wasting time (although, I know it's a stretch to describe playing a Scrabble knock-off and commenting on my friends' status updates as activism).

Fourth:

Just over one week of school left. Double-edged sword, that. S. has had a fantastic teacher this year. Can't say the same of D. His teacher was complaining that he does his own thing too much, like reading a book by himself during story time. Um, perhaps this is because he is READING NOVELS while she is teaching the kids what sound the letter 'a' makes. Sigh.

Next year, he is switching schools and entering the "gifted" program (this term is a "don't get me started." Both my kids have tested as "profoundly gifted." My friend M. says we should just call these kids "idiosyncratic learners." Another terrific teacher once said, "It's just another kind of spec. ed." These kids have their own set of learning challenges and my older son is thriving in the program). It will be great to have the kids in the same school.

Fifth:

My older son has been asking for guitar lessons for a shamefully long time (shameful because music is an area of my kids' education that we have sorely neglected). I just signed him up for Rock School. If he enjoys the week, we will sign him up for lessons.

Sixth:

I have never set foot in an Abercrombie and Fitch. The fact that this beautiful young woman was relegated to the stockroom because she has a prosthetic arm has ensured that I never will.

Seventh:

My Xmas tree is still in my back yard. I think that's kind of sad.

Eighth:

I am seeing my oncologist in person for the first time in months, this afternoon. I plan to give him a copy of my book and remind him that we discussed taking a break this summer. I plan to skip treatment in July (so I can go to BlogHer). I also want to ask him if I can take August off as well. If he has any hesitation about this at all, though. I won't push.

I promised.

Ninth:

Posting gratuitous photos of my son being goofy (future blackmail fodder for sure). Noticed that I look even goofier in that hat but decided that censorship on that basis would be hypocritical. Thanks to my bro-in-law for capturing the moment with his cell phone.