so this happened

On April 1st, I had a brain MRI. 

Then, last week, the very competent secretary who works with my neurosurgeon, left me the following message on my voice mail: "The written report is not yet available but Dr. S. has looked at your MRI and he says that it looks better. He says he doesn't need to see you but that you can make an appointment to see him if you want. He wants to do another MRI in three months."

And that was it.

Yes, it's good news. Yes, I'm relieved. But I'm also confused.

How is it "better"? Has the mass stopped growing? Become smaller? Is he now convinced that it doesn't have to come out? Has the other reported mass (deeper in my cerebellum) disappeared?

I called the secretary back the next day but she had no further information. She did offer to send an email asking for the written report to be expedited.

I still don't have it.

It occurred to me that the radiologist (who writes up the MRI reports) has been the most pessimistic player in this game I've been involved in since late summer. His report prompted Dr. G to tell me I had a new tumour (the radiation oncologist and neurosurgeon weren't so sure and, after more testing, decided it was necrotic - dead - tissue caused by radiation). 

It was the radiologist who wrote that I had a recurrence and a new tumour, most recently.

And the radiologist wrote the report that I saw at appointment with the neurosurgeon on March 12. Dr. S was concerned enough to suggest I was going to need surgery but not convinced that we were looking at a new tumour. He was outright dismissive of the existence of a new tumour, deeper in the cerebellum.

Now that Dr. S has put off surgery, at least for the next three months, I need to know what the radiologist (Dr. Doom-and-Gloom) has to say.

Tim and I have both noticed that oncologists and surgeons seem to have little respect for radiologists (it's like they barely graduated from high school, let alone medical school). Still, we'd like to get our hands on that written report.

I've had to sit with this information for a bit before I could write about it. This is partly because it's awfully difficult to explain. I've done my best but feel free to ask questions in the comments or contact me directly. 

It was also a shock.

And I was a little embarrassed. First I have a brain tumour. Then I might not. Then I don't. Then I do. And now - maybe not?

I feel like the Boy who Cried Wolf (the Girl who Cried Tumour?), except that I haven't been playing at any of this. And I know that no one who cares for me is actually going to be disappointed that I'm not getting ready for imminent brain surgery.

I want that report. I want the results of the bone scan I had the next day (I'm trying not to be worried that I can't get a nurse to give me those over the phone).

And then I want to try and live my life to the fullest, with all it's ups and downs. Will you help me?

how much to say and how to say it: the blogger's dilemma

I'm finding my blogging constrained these days by thoughts of how others, particularly my family, are feeling. I'm especially concerned that my children could be reading, if they chose to do so. How could I possibly put my very darkest thoughts here, as well as my most hopeful, happiest, meanest and angriest, knowing that they could read these words and not understand that how I feel in one moment is not how I feel all the time?

Do I protect them or do I just be honest and know that those closest to me have the real me to talk to and reassure with my presence? Does silence actually protect anyone?

It's hard, even in the most banal of times, not to feel self-conscious - something that definitely hampers writing.

I feel a need to write but also a need to be read. I've considered password protection of my posts but that feels like locking people out when I want to be accessible. I don't even have much security on my Facebook profile because I think gives a false sense of security. I prefer to only post to the internet things that I'd be comfortable with the whole world reading. I can write, edit and even delete before posting. I am in control.

Or perhaps not. How can I know who reads and how they are affected? Are my thoughts embarrassing or even wounding to those I love? Months of silence on the blog have not meant that there has been anything wrong, just a lack of inspiration brought on by ennui and the self-imposed imposed limitations that have grown with the years.

My oldest son, who is beautiful, brilliant, funny and talented is a pretty private guy so I don't often write about him here. I have lots I could say but I respect his boundaries and don't share about him without his permission.

My youngest is more outgoing and happy for me to post photos and discuss our adventures. He's almost 12 though, so I know that door could soon be closing.

I've always considered writing about myself and my fears and foibles to be fair game. But perhaps it's not. At any rate, I'm conflicted. We'll see how it all shakes out in the coming weeks and months.

I have kept a journal for years. It's where I purge everything and I seldom feel a need to go back and re-read my words once a notebook is finished. One afternoon this winter, I threw a bunch of these journals into the fire and watched them burn. It felt very cathartic but created an awful lot of ashes. I think I'll just gather up the rest when I'm ready and throw them out with the re-cycling (I'll do it on pick up day, so no one actually has the chance to try and decipher my writing).

This blog, however, is permanent. I do know a woman whose family deleted her blog after she died but that felt really wrong to me. I want my words to live on but hat very thought makes each word weigh more heavily.

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

screening the sun like an ostrich

As is pretty normal around this parts, we seem to have gone directly from winter into summer, with no real spring in between. And we also seem to have gone from winter boots and coats to the danger of sunburn.

I've been in denial about all this but I noticed a bit of pink on my arms today and realized I need to start applying the sunscreen. You'd think this would be simple but it's really not.

I am extremely ambivalent about sunscreen. It's important as a means to help prevent cancer but much of it is filled with carcinogens. The kind that isn't can feel like rubbing on bread crumbs and leave cement like globs on your skin. I found one a couple of summers ago that was organic and everyone liked but it cost $52 for 147ml (5oz). In my house, one of these tubes didn't last very long.

I think I can justify something a bit more expensive that I use sparingly on my face but I need something that the kids can apply liberally without me hovering over them muttering contradictorily about coverage and waste (Blogger says "contradictorily" isn't a word but I think it ought to be and I'm going to use it).

Our fallback seems to be buying sunscreen with good sun protection power and recommended by doctors but still loaded with chemicals. Or to use whatever's handy and hope for the best.

I'm sure there is a better solution out there. Do you have an affordable, effective and safe sunscreen you can suggest? One that's good for sports? Good on your face?

I think I need to pull my head out of the sand. That might keep my head from getting sunburn but it's not a very practical way to spend our fleeing summer.

limits on multi-tasking (on not doing pelvic lifts while I brush my teeth)

You'd think that since I don't have a full-time job (or even a part-time one) and both my kids are in school that time management would be a breeze, yet I still find myself struggling to get things done.

Part of that is pure procrastination (it's a slippery slope from checking my email to reading 10 tabloid stories someone linked to on Facebook). 

Part of it is feeling overwhelmed (where to start on a large project? which project should I work on first?).

It's also that I have changed the way that I live my life. Before cancer, when I worked full time, it seemed that every minute needed to be spent in a productive way. I tore myself out of bed in the morning as though jolted by a starter pistol and collapsed back in long after I knew I was tired. I answered emails while watching TV, talked on the phone while I played with my kids, read over documents while I rode the bus. There were seldom any truly quiet moments.

Cancer pushed me off that treadmill. In some ways I miss it but in lots more ways I don't.

While I still keep lists obsessively, I try not to obsess over getting through them. And over the last few months I've begun to embrace the efficiency of doing one thing at a time and doing it to the best of my ability. I still have a long way to go.

Every time I read a newspaper online or leaf through a magazine, I am urged to multi-task in every possible way. "Give yourself a facial while you make dinner!" "Fold laundry while you return calls!" "Tighten your butt muscles while you brush your teeth!" It all feels exhausting to me.

I am very fortunate to have been given the gift of time. I'm working at making it work for me. I want to focus on playing the game, not worrying about whether I'm going to drop the ball.

filling that prescription

A few years ago, I worked my way through the Artist's Way. I found the process to be extremely helpful in getting me past my writer's block and I followed the program dilligently - except for one component. In all twelve weeks, I did the Artist's Date exactly once.

I know in my head that play time fills the soul. And I know that the repetitive motions of knitting can spark creativity and be enormously soothing. Yet I seldom set aside time just to knit unless I'm watching a movie with my kids,out on a knit date or on a road trip. And I know, too that I chose knitting as my play because I usually have a product at the end that someone can use. This makes the time easier to justify.

But human beings need to play in order to be happy. And the benefits of creative time spill over in to so many other aspects of our lives. Blondie, one of my favourite bloggers wrote in a recent post she wrote after a night of insomnia:

...I got up and went to the couch. Sitting on the footrest was the latest cross stitch project I've been working on. It hadn't been touched since sometime last week. I can't even remember when I started it? I picked it up and worked on a little flower. In no time at all, I felt my body and spirit relaxing. I realized I was holding my entire body slightly UP and in a very unusual and stiff way. I was wound up TIGHT. If you touched me, I probably would have zapped you with a long, blue, electric arc. But after a half hour of stitching, I was much more calm. Even the kittehs seemed more relaxed. Collectively, we were detoxing. And after I made some good stitching progress, I made myself go lie back down and try to sleep. Eventually, I did.

Blondie called her post "Prescription for Art." I think this is perfect. Indulging our creative needs should not be an afterthought but a prescription for mental health and happiness. As Blondie points out in her post, art is good for our bodies and our spirits. We should all make time for it. The product need not be perfect. It's the process that matters.

We can't all make great, or even good art. But perhaps this prescription applies most of all to those of us who would never call ourselves "artists." We can all seek inspiration in the world (and from art of all kinds) to make stuff and make ourselves a little happier.

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.

i've been a bad friend

I've been brooding a little bit lately over all the ways I have been a bad friend since my breast cancer diagnosis.

I know I have and can still be a good friend much of the time but I've been thinking of how good people have been to me and I feel like I've fallen short in the reciprocation department.

I'm not being too hard on myself for cocooning during the worst of treatment. But there have been lots of good weeks during remission. I have missed so many important events in friends' lives - the births of children, loss of loved ones and serious illness. And now I don't know how to make up for that.

Friends, acquaintances and co-workers have sent me on trips, bought me presents and food, taken me out and sent me beautiful messages of support. I've been better lately at being the kind of person who does these things for others but I think, for longer than I cared to admit, I was too busy staring into my own navel - at least some of the time.

I'm in a pretty good space these days. Today, however, I am especially aware of regret.

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.

lost my mojo

Mid-winter blues.

Bored.

No new ideas ("said it all before" syndrome).

Too much loss.

Whatever the reason, I have not felt much like blogging (or doing any writing) lately. 

I couldn't even muster up the energy to blog about the recent Komen debacle (although I took it all in with great interest).

And I can barely bring myself to think about Rachel (a scathingly brilliant and funny anti-pinkwashing activist and kindred spirit) or Susan (an equally brilliant leader, founder of Mothers With Cancer and mother of two young boys) without becoming undone. They deserve the kind of tributes others have written but I can only say who devastated I am that cancer has taken two more wonderful women.

So, I've been taking a break. 

And fallen out of the habit.

I think I might be ready to come back soon. Or to get back to writing down some thoughts.

And spring will come soon too.

Meanwhile, please know that all my latest tests have been gloriously normal. I'm doing OK. I just need to get past this dry spell, so I can return to writing with joy and enthusiasm.

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.