book review: Getting Past the Fear. A Guide to Help You Mentally Prepare for Chemotherapy

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:

"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."

If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

help keep the treatments coming

An open letter to everyone who reads this blog:

Did you know that, in Ontario, where I live, public health care pays for drugs administered in the hospital but not (most of the time) for those that are administered orally or at home? I've been extremely fortunate that most of my drugs were covered by OHIP and those few that weren't (mostly for mitigating side effects) were covered by my private insurance.

My friend Sue hasn't been that lucky. The chemotherapy drugs she needs for her lymphoma are best administered at home. As Sue points out, this is less expensive (the overhead costs are low and the possibility of her catching something that would land her in hospital is much lower) but she has been forced to pay for this life-saving treatment herself.

Sue is, without exaggeration, one of the kindest most generous people I have ever known. For many years (I first met her in 1996), she worked in a local pet supply place, where she provided advice and support to countless people and their pets. She seemed to remember every person and animal she met, whether on the street, in the dog park or at the store. She has personally rescued more than 500 dogs but knows how to help without passing judgement. I've never met anyone like her.

Not long ago, the store she worked for was sold to a chain and the new owners decided to lay off the senior staff, in favour of less-experienced minimum wages workers. On Sue's last day, hundreds streamed through to deliver presents, wish her well and give her hugs. She is a very loved part of our community.

When Sue was diagnosed with cancer, she was still without the benefits she lost when she was laid off. There are programs that help with the costs of drugs but they required that she must first drain her bank account of the money she'd received as severance pay and an inheritance from her mother, who passed away recently. So far, she has spent $50,000 of her own money.

She will soon have burned through all her savings and her inheritance. She will qualify for provincial support but will not have money to pay her rent and continue treatment during the waiting period. Will you help us close that gap? An online fundraiser has been set up to "keep the cancer treatments coming." Even if you can't help with a donation, please spread the word. I'm sure that we can reach the fundraising goal of $5000.00.

Sue's story could have been mine. This could happen to someone you know and love. We need to change this arbitrary line drawn by OHIP. But in the short term, let's help Sue, who has given so much help to so many people.

Photo courtesy Sue Breen.

updating my words and myself

I've been thinking a fair bit about my last two posts.

First thing:

After writing my post about the lack of privacy in the chemo unit at the cancer centre, I was encouraged by several readers to follow my words with some action. I went to the Ottawa Hospital website and filled in the feedback form with a brief comment and a link to my post.

On Tuesday (the first business day after the long week end), I got a phone call from a "patient advocate" at the hospital. She was calling to let me know that they'd received my message and to ask permission to look into my medical files in order to determine with whom they should follow up (I was so stunned by this phone call that that it didn't occur to me until just now that they didn't need my medical info; they already knew that I was writing about the chemo unit and I could have just told them the date and time of my treatment. The irony in my  readily agreeing to this invasion of privacy, so they could follow up on a post about privacy is not lost on me). 

I was impressed to get the call and I have since been wondering about all the times that far more egregious things have happened at the hospital (as well as some equally wonderful things) and how I could have acted on them quite easily. On the other hand, no promise has been made to actually do anything or even to report back to me. The advocate said that I "may notice an improvement" the next time I go for treatment. And if I don't, she said I should fill out the feedback form again.

Second thing:

My last post was the first one I have ever considered taking down after publishing. I don't actually think that I'm a bad friend, generally speaking. I just have days when I tend to dwell on my regrets. In writing the post, I thought that by naming this shame, I might be able to let go of it a little.

I have a tendency to see the world in terms of right and wrong, good and bad (at the risk of sounding totally flaky, I am a textbook 1 on the enneagram scale). This can make me a little (ahem) judgemental  One of the things I like about myself is that, as I have aged and lived, I have also mellowed and come to understand that, a lot of the time, there are very many shades of grey. However, I still tend to be hardest on myself.

One of the things I'm working on is learning to let things go, forgive and move on, without repeating the same mistakes. Progress is not always linear but without a doubt, I am progressing.

it matters

Last Tuesday was treatment day. After a longer wait than usual (40 minutes -  I don't think I've ever waited that long in more than 6 years of treatment), my name was called and I was asked to go to Pod 3 (this sci-fi evoking nomenclature amuses me greatly, given that the world of cancer care is already pretty bizarre).

Despite my long wait, I noticed that Pods 1 and 2 were completely empty. Pod 3, however, was a different story. All 6 spots were occupied and there appeared to be only two nurses helping us all. 

Have you seen 50-50? I loved that film, and by and large, I found it to be a pretty accurate reflection of my own experience. One thing did raise an eyebrow though - the fact that they seated the patients in the treatment room so close together that their knees could touch. I understand that this likely fiction helped to advance the story but in real life I would never enjoy being so 'up close and personal' with my fellow patients.

For a while, things were almost that bad at the old cancer centre until the construction of the new building began. After that, the din was excruciating but it did block out my neighbours' reports to the nurses on the frequency of their bowel movements.

The move to the new cancer centre has been a huge improvement. I love the light and the air in the new building but most of all, I love the space. During my last couple of visits, though, it has felt like there is a little less space to go around. 

On Tuesday, I cringed as I heard the woman in the bed beside me being grilled about her emotional, physical and financial situation by a community care nurse. I tried to concentrate on my book while the woman across from me was informed that she would need a transfusion. I was very relieved when my own interactions with the nurse were over and I could plug in my ipod and let The Flying Bulger Klezmer Band drown out the voises around me.

I'm a fairly stoic cancer patient and it didn't really occur to me to complain. The nurses were lovely and patient as usual, and they were definitely doing their best to keep on top of everyone's needs. I didn't want to give them a hard time because I was annoyed and embarassed.

But it occurred to me later that these kinds of conditions are also unsafe and unhealthy. I, for one, am extremely reluctant to talk about the intimate changes to my body that are a side effect of treatment, so I can't ask how to mitigate them. My conditioned response in these circumstances is almost always to say "fine!" when asked how I'm doing. These days, that's pretty much the truth but that hasn't always be the case. There was a time, on a quiet treatment day about a year ago that I confided in a nurse that I'd been feeling low. She told me about the counsellors at the psycho-social oncology centre and asked permission to get someone to call me. A few sessions later, I was feeling much better.

I appreciate that I am getting cutting edge treatment and I know that's why I'm still alive. That's why I was initially reluctant to make a fuss about what seem to be little indignities.

But dignity matters. And how we feel as patients has a direct effect on our health. It's not petty or selfish to believe that there should be enough nurses working the floor so that patients don't have to be clustered together.

Maybe I should write someone a letter. Or maybe just a short note and a link to this blog post.

2012: ditching the Guilt

What Catholic girl (former or otherwise) doesn't learn to feel guilty at a very young age? I was always a bit of an overachiever. I'm good at Guilt.


I feel guilty that I have No Evidence of Disease when other wonderful women have died.


I feel guilty that I'm not working.


I feel guilty that I have insurance.


I feel guilty for being alive.


And, with every clean scan, every month that I continue in treatment that does not include chemotherapy, the guilt just gets worse.


It's not very constructive.


I need to figure out how to free myself from the Guilt. It distorts my perception of myself and others like a greasy hand-print on the lenses of my glasses. I have to figure out who I am and what I want, without having to squint or interpret what's on the other side of the smudges.


It won't be easy. And it may take me more than a year. But that's what I'm working on in 2012.

chemo brain or just getting older?

A few days ago, a massive filling popped out when I was brushing my teeth.

I made an appointment with my dentist to go in today. It hurts, so I've been very much looking forward to this appointment, mentioning it a lot and looking forward to being able to chew again.

I was shocked this morning when my dentist's office called, and his assistant said, "You're supposed to be here. Do you remember your filling?"

I hadn't forgotten my appointment or the filling (did I mention it hurts?) but I had been convinced it was at 2pm this afternoon, not 9:20 this morning.

As it turns out, they did have an opening at 2pm, so I will get my tooth fixed this afternoon, after all. As she was hanging up, the assitant said, "It was just a misunderstanding." I responded with "No, I'm an idiot."

Please tell me that this kind of thing happens to you, even if you've never had chemo.

this could be me

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

short term planning

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. 

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room. 

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

not so jaded after all

Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.

I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.

One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.

But it was worth it.

The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."

I hope that I sounded as pleased as I felt when I thanked her. It always means a lot to me when someone is moved by my writing but to hear that a nurse who hears all kinds of stories every day was inspired by me...I was floored.

small changes

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

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)

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

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

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

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

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

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

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

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

 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).