oh oh...

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

hello again

I'm back.

All is well here, I just used up all my writing mojo in November writing a novel (more on that experience in a future post).

Then I took a few days off to hang out with a wonderful friend and, well not write for a few days,

And while I was gone from the blog November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) came and went. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.

It's been four years since I found the lump. It's been three since the cancer spread to my liver. And it's been two and a half years since my first clean scan.

I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, "Shall we keep dragging you in here every few months just to say 'hi'?"

I readily agreed.

I have chemo next week. They've been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, "They're building that for me."

Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.

I'm kind of excited.

And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.

but i have an excuse (actually i have a few)

I bailed on National Novel Writing Month on the first day, having written just under 700 words.

I felt like there were too many other interesting bits of writing that I wanted to do, including continuing to edit last year's novel.

And then my life became insane. I've been really hard on myself for all the things I'm not doing lately. This week, though, I've had two people who are very important to me (my coach/therapist and my friend DM) listen to me unload and then tell me that I would have every right to feel overwhelmed with a fraction of what I've got on my plate.

I tend to be hard on myself because I don't work outside the home right now. If I don't go to a job I feel like I should just sail through my other commitments. It felt really good to list everything going on in my life and have two women I respect offer support and sympathy. I've decided that I need to cut myself a lot more slack.

I can do NaNoWriMo next year. I'm OK with that. But I did feel a pang when my son sent me this video:



NaNoWriMo was a fun kind of crazy. I just couldn't let the rest of my life go to do it this year.

it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer. 

my husband's chest

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

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.

this is kind of nice

TopOnlineColleges.com as included Not Just About Cancer in their list of "15 Inspiring Breast Cancer Blogs."

Get inspired by this breast cancer survivor, who turned her unfortunate situation into a book about defying the odds and beating cancer.

Pretty cool, no? It's nice to know that someone's reading and finding resonance in my words. As for the "beating cancer" part - I know it lurks there somewhere and that we who have gone to Stage 4 are never, ever out of the woods but I do like to think I'm beating it.

just under the wire

It's the very last day of "breast cancer awareness" month and I have a post up at Mom 2.0 Summit, "Pinkwashing won't cure breast cancer":

"I care about bringing an end to breast cancer. As someone who has lived with the illness since first being diagnosed in 2006, I care very much. However, I don’t think buying fried chicken in a pink bucket or a pink screwdriver is going to change very much at all."

I also wrote a post for BlogHer for Metastatic Breast CancerAwareness Day, "I'm sick of cancer but it won't be a good day when my treatment stops":

“Women with metastatic breast cancer never really fit in with others in the breast cancer community. To those who finish treatment, embrace the word “survivor," talk about “winning their battle" and never looking back, we represent the worst that can happen. Who wouldn't want to believe that if you stay strong through treatment, stay positive and do everything right, you will get to leave cancer behind?”

I hate pink ribbons and pinktober for a whole host of reasons that I realize I can now rattle off in a two minute rant. Ask me some time. It could be my new party trick.

chemotherapy and the H1N1 vaccine

As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.

I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.

I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.

Today, the nurse who works with my oncologist called and told me to wait.

The reasoning goes as follows:

Chemotherapy suppresses the immune system.

The flu shot is meant to boost it.

Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.

Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.

This means that I will be waiting until November 10 for my H1N1 vaccine.

And washing my hands. A lot.

3 weeks later

If you'll recall, I was hesitant to have my port put on my right side because of my truncal lymphedema. I figured that if I'm not supposed to cut my right arm, or even have blood pressure taken on the side, then I probably shouldn't have surgery either. After all, I have very little lymphedema in my right arm and lots in my back and chest.

Well, I have even more now. And it's really uncomfortable. And the site of the surgery also became infected.

I was put on antibiotics for a week. At the end of the week, I saw only a tiny bit of improvement in the wound and the antibiotics had made me sick. And they made me weak enough that, as I was recovering from the antibiotics, I contracted a brutal gastrointestinal virus.

It's been five weeks since surgery and I still don't feel like myself.

And tomorrow, I have treatment.

But at least I'm writing again and riding my bike and going for walks. And the wound, is finally healing.

I think I need to put all of this in a letter to the hospital. An open letter.

Until then, I'm back. And happy to be here.

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).

please be aware

Today is Metastatic Breast Cancer Awareness Day.

Six years ago, I thought I had a pretty good vocabulary but I didn't know the meaning of "metastatic" until I was diagnosed with breast cancer.

According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I'm one of the lucky ones ( stats are bogus anyway).

I think one of the reasons I get so angry at campaigns aimed at "saving [insert infantile name for 'breasts' here]" is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are "the bad girls of breast cancer."

And we want you to know about us.

We are:

Catriona

Rachel

Katie

Jeanne

Deanna

Judy

Susan

Katherine

Eileen

Delaney

Kristina

Dirty Pink Underbelly

Susannah

And we remember:

Sarah

Emily

Rebecca

RivkA

Sue

Andrea

Kate

Chris

Daria

Lisa

Jill

Renee

brain fart

Today, I set myself up to do a phone interview with an author based in Los Angeles, California. 

The whole thing was set up through her publicist and we'd worked out a time of 12:30pm PST for me to call.

Counting the three hour time difference in the wrong direction, I came very, very close to calling her at 6:30am PST. This would have been bad, especially because she writes in her memoir that she is most definitely not a morning person.

This is embarrassing. The publicist first suggested an earlier time and I balked because it would be "the craziest possible time in our house, as we try to get everyone out the door." The time suggested had been 11:00am PST, which really would have been 2:00pm EST, which would have been fine.

I really should know better. I spent three years on the West Coast, in the heart of PST-land. I also spent 15 years working for national organizations and was adept at working out time zones.

My brain is rusty.

The interview is really scheduled for 3:30 EST. I will be in the middle of my afternoon slump but at least I know I'm ready.

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

tired

I've been really struggling with insomnia lately. Falling asleep is tricky enough, but remaining asleep is the real challenge.

Most nights, I find myself awake plagued by questions:

Where do I know the actor from who played the handyman in The Waterhorse?

Should we have washed the dogs before we cleaned the carpets?

What if my oncologist ordered a thoracic CT scan so soon after my last abdominal one because they heard something during my last exam (and not just because I hadn't had one in a long time)?

Is the hat I'm making for D. going to be too small?

Was the other movie The Truth About Cats and Dogs? (I looked it up. His name is Ben Chaplin and it he was the actor in both movies).

Was I sent for two CT scans two weeks apart because of poor planning (or poor communicaiton) or is there something ugly growing on my lungs?

If the hat is too small, should I give it to someone else or rip it out and start over?

And so on, until I realize that sleep is hopeless.

Then I get up, play a little online Scrabble (or Lexulous), look up movies on the internet, check out what's happening on Facebook and hope that I will start to feel sleepy again.

But I'm tired today and tired makes me feel melancholy (I have more on that subject but I think I need to save it for another post).

I could drink more caffeine or go take a nap but neither will help me sleep tonight. Don't know if I can help myself, though.

chronically whiny

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

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.

frequent flyer

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."

CT results

"It's good news!" said the voice on the other end of the phone. She sounded ecstatic. When you are nurse working in oncology, relaying good news must come as a welcome change.

"You're kidding!" I exclaim. Then, "I don't know why I always say that."

She laughs. "Well, there is no change. It's stable."

Seriously, she sounded giddy. We giggled some more.

She said, "You have a wonderful week end." She really sounded like she meant it.

Suddenly, I'm in the mood to celebrate. I already have dinner plans. And I probably would have had a beer anyway (they have Beau's. How could I resist?).

Now, I may have two. But I doubt it. I will just enjoy the beer, the food and the company (six people I love), even more.