may you live in interesting times

It's been two weeks since my surgery and for some reason, I thought this would be the easy part. I don't really know why I thought that, except that both my surgeon a and my medical oncologist seemed to the think that putting the Ommaya in could have been like day surgery and I would be feeling like myself again in a week or so.

Not so much.

The nurses were much more cautious and they said to take it easy, be consistent in my activity and increase it very slowly. Ultimately, this is what makes sense. I just wish I weren't so damned impatient.

My surgery was on May 9th. I was in the recovery room for much longer than planned because there was no bed for me in the neurology ward. I ended up being moved in the middle of the night and sent home by noon the next day. And I was just kept in as long as that, so that I could get my three doses of IV antibiotics.

I had a good first couple of days at home (and it was such a relief to be there) but later in the week, after a fast taper on the Decadron (the steroid with which I have a hate-hate-like relationship), I started to notice that my eyes were getting swollen, as though the lids were filling with water. By Saturday afternoon, they were swollen to slits.

They got worse.

No one told me this could happen.

The next day, Sunday, my eyes were starting to improve but my head was hurting. In the beginning, all the pain had been around my incision. By the following weekend, the top and back of my head hurt and it felt just like my brain was swelling. Or a new tumour was cutting off the flow of liquid. It hurt and was very, very scary.

I debated going to Emergency (I hate the ER but the stuff I was reading online pretty much said it could either be a nuisance or kill me) but in the end, decided to take it very easy and call my surgeon the next morning (Monday).

My doctor's secretary made me an appointment and had me come in. My surgeon ended being called away to an emergency and we spent 5 hours at the hospital. It was worth the wait. A CT scan showed that there was no bleed and no obvious new tumour. My doctor put me back on the steroids (a drag but good for the swelling), shared a pretty decent MRI with me and a very hopeful story of a patient with leptomeningeal disease who he knows and has treated, who is still alive and active, two years after her diagnosis.

I told him that I'm collecting hopeful stories.

I went home in a much better mood but woke up in the night with a killer urinary tract infection, my second in a month and almost definitely contracted at the hospital. I have finished my course of antibiotics to treat that and am trying to consume as much probiotic as I can, to avoid a resistance to antibiotics. 

It's totally a case of two steps forward, one step back. On Saturday I felt pretty good and .possibly overdid it. Today, my head hurts again and I am tired from the steroid induced insomnia. I'm also feeling irritable and impatient. I am not supposed to bend down or lift anything. And I hate having to ask for each thing that I need to be done for me.

Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin

At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.

Or not.

p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!

i'm aware. are you?

Circulating on Facebook, posted by the late Lisa Bonchek Adams

Yesterday was Metastic Breast Cancer Awareness Day. This is official in the United States but not in Canada. 

I should have written about this yesterday but I was busy getting treatment, which I do every 4 weeks and will continue to do until it stops working. 

Despite a liver that once had "more tumours than you can count" and two brain malignant brain tumours, I have been very, very lucky. As per the graphic above, the median survival of someone with a diagnoses of metastasis is three years. It has been almost 10 years since my original diagnoses and 9 since I learned I have mets.

This October, as we are awash in a sea of pink, I ask you not to go bra-less on my account, get cutesy about where you leave your purse and I don't want to know the colour of your bra, if you are wearing one. And please don't buy pink crap or anything just because it is festooned with a pink ribbon.

Inform yourself for real. Educate others. Donate if you can, to where you money will go the farthest.

In the United States there is Metavivor and the Metastatic Breast Cancer Network. 

In Canada, we have no group devoted exclusively to metastasis but the Canadian Breast Cancer Network has taken on a strong advocacy role and outreach role.

the myth of early detection

This is a link to an excellent article in Psychology today. It addresses the myth of early detection. I know it is comforting to believe that if you catch cancer early you can prevent it but that's not how it works. It's such a fraught notion that it can be hard to explain. This article does it well. 

The greatest myth serving the early detection belief system is that breast cancer is a single, homogeneous disease that always behaves in the same way, progressing from early to late to lethal (stage 0, 1, 2, 3, 4). From this linear perspective, catching breast cancer "early" suggests that the cancer can be nipped in the bud, stopped in its tracks, prevented from progressing to a lethal stage. A cancer stage, however, is not a point in a definite progression.

bouncing ball

Stand at the top of a driveway. Bounce a rubber ball as hard as you can. Notice how each time the ball hits the ground, it re-bounds a little less.

I have a lot of empathy for rubber balls right now.

In my last post, I somewhat hesitantly shared good news from my neurosurgeon. Things were looking better and he didn't need to see me or do another scan for three months.

I was relieved but also a bit uneasy. I pushed for the report from the radiologist. I also went to yoga classes, hung out with friends and family, rode my bike and went about my daily life with a little more spring in my step bounce in my walk than I have in a while.

Last Wednesday, the other shoe dropped. The phone rang at about 5pm as I was racing to get some food on the table and my youngest out the door to an orientation at a potential new school. My mother was here and I was trying to visit with her at the same time. I really wasn't braced for anything serious on the other end of the phone line.

It was the secretary who works with my neurosurgeon calling again. She told me that Dr. S spoke with the radiologist and they both agreed that the mass at the previous surgery site is “stable” (That's good. Not as good as “smaller” but OK.) but there is a second spot that is “of concern” to both of them. Dr. S wants to do another MRI, six weeks from the last one, and he wants to see me this week in his office.

Or something like that. It's all a little bit of a blur. I think I went into shock.

I was in a hurry and didn't really want to explain so I tried to pretend that nothing was wrong, failing miserably. I can't put into words how it feels to sustain that kind of blow when you least expect it and then to just keep going, as though nothing has happened. I've done it before but I have never been very good at it.

It's a testament to the (maybe) new school that the presentation and tour were absorbing enough that I actually remember chunks of the evening. What I do remember well is that when I got home, I crawled into bed and had a good cry.

The next morning I got up, got the kids out the door, went for a run and then had a latte on a patio in the sunshine. I felt better.

It's getting harder to pick myself up, dust myself off and keep going on with my life. I'm bouncing back a little less high and it's a little easier to knock me back down again.

While I have had truly excellent, cutting edge care every step of the way, I wish that communication were better. I wish my doctors spoke with each other. I wish we planned next steps together. The process shouldn't wear me down. The disease is hard enough.

I'm feeling a little less resilient these days. Eventually, every ball stops bouncing, rolls for a while and comes to a stop.

I'm tired of this metaphor. I need to come up with a new one.

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.

so i voted

Yesterday, municipal elections were held across Ontario. We elected our mayors, city councillors and school trustees. And I almost didn't vote.

I had a few friends ask me, in the days before the election, "Who are the progressive candidates? How are you voting?" I was at a loss to answer.

The truth is that our mayor, while not running unopposed, might as well have been. And while I acknowledge that he's very hardworking, I'm not a big fan.

My city councillor seems like a decent enough guy but I have not found him to be very responsive, the couple of times I've had to contact his office. I've also heard interviews with him, where he seems to arguing both sides of any given scenario. I'm not sure that makes him very effective at city hall. At any rate, he too seemed to running without any real opposition.

The candidate for school trustee was literally running without opposition, as he was acclaimed.

In my corner of Ottawa, the election was not very exciting and participation didn't seem compelling.

Then my kids overheard my spouse and I talking about the election and asked why I was considering not going to the polls on voting day. I had a hard time coming up with an answer that didn't sound apathetic and lazy to my own ears.

In 1988, I was part of an exchange program, that took me first to Alberta and then India. While we were overseas, a federal election was going to take place. At that time, people out of the country for an exchange program could not vote in advance polls or cast a special ballot (this loophole has long been changed). I was bitterly disappointed, as this would have been the first election since I had come of age.

The other thing I remember is that in my group of 7 Canadians (and seven Indians who looked on with interest), I was the only one who cared that we couldn't vote. As someone who bitterly opposed the sitting government, I wanted to have my say.

I have come to understand the perspective of some of my friends. We are not going to affect great change solely through the ballot box. I guess I've just decided that the ballot box is still important.

My kids are interested and engaged with the world around them. I don't want to send the message that their mother is apathetic or so jaded that she couldn't be bothered to walk three blocks to the polling station.

So I picked up my youngest from school yesterday and took him with me to vote. He watched me fill in my ballot and submit it for tabulation (electronic! Can anyone explain to me why we don't have this at the federal level?). In the end, I filled out my choice for councillor on the single ballot but didn't vote for any mayoral candidate. On the way home, we discussed how I had filled in my ballot and my reasons for making the choices that I did.

All over the world there are those who are denied the right to vote. As a woman, I have only had that right for a short part of my country's history. Showing up at the polls may not change much but I'm glad I have the chance to do so. And I want my kids to understand the range of options they can use to make their voices heard, even in a tiny way.

hold the duct tape

"Women with disabilities often experience health disparity. For instance, in a 2010 study of the barriers preventing women with disabilities from getting screened for breast cancer as often as is recommended, is, believe it or not, lack of physician recommendation. In other words, doctors don’t talk to women with disabilities about getting screened for breast cancer. This is often also the case for pap tests. In a Canadian study (PDF), women with disabilities reported often only receiving healthcare in the narrow area of what is directly related to their disability."

Did you know that women with disabilities often face huge barriers when it comes to breast cancer screening? A conversation with my friend Lene left my jaw on the floor (and I truly thought I'd heard it all). She's written about it on her blog, The Seated View. And be prepared, the duct tape reference is not a joke.

just skip the anesthesia. he's tough.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

health care is an election issue

I heard on the radio this morning that health care has not been a key issue during this provincial election. I disagree. Maybe the media hasn't picked it up, but health care has been very much on the radar for several groups and the people who support them.

The Fair Cancer Care campaign asks that everyone sign a petition and get their candidates to support access to the best chemotherapies regardless of cost or ability to pay.

Cancertainty has pulled together more than 40 organizations to get the province to pay for oral chemotherapy. The majority of new chemotherapies will be oral and are not currently paid for by OHIP, as they are not administered in the hospital.

Prostate Cancer Canada has been lobbying hard for OHIP to pay for PSA tests, so prostate cancer can be diagnosed and treated earlier.

The Canadian Breast Cancer Network asked all the major parties if they would:

Take measures to shorten the approval times for reimbursement decisions on drugs for metastatic breast cancer patients?

Put in place a timely review mechanism for the applications of cancer drugs on compassionate grounds?

They only heard back from the Liberals and the Conservatives (who provided a form letter that didn't address the question at all).

I'm certain that health care is a major issue for all who live in Ontario, particularly as our population ages. Tomorrow, vote for health care. 

After the election, let's make sure that equitable access to excellent, high quality health care remains an issue that must be addressed.

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.

in others words

I have pre-empted my scheduled blog post because the internet kind of exploded last night and it spilled over into today. The whole thing made me so emotional as to be almost inarticulate with rage. Luckily, there have been several good pieces published today that make my words unnecessary.

Sorry for being so cryptic. Just click through. You'll understand.

"On Live-Tweeting One's Suffering" (Megan Barber in The Atlantic)

"Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams" (Daniel D'Addario, Salon)
"I have cancer. And I'll write about it as much as I fucking want." (Bob LeDrew, Medium)

remembering

photo: Benoit Aubry, Ottawa (Wikimedia Commons)

Across Canada today, people are attending events, watching ceremonies and wearing poppies in remembrance of those who lost their lives and lived through war around the world.

It's a time of gratitude for willing sacrifice and for melancholy remembrance of all that has been lost.

This year, there was a fair bit of controversy over those who would replace the traditional red poppies with white, to symbolize a commitment to peace. In my view, there has been far too much hyperbole on both sides of the issue. Those who advocate change, accuse those who wear red as glorifying war. Those who love the traditional red poppy have called the white "disrespectful rubbish" and those who advocate for them "morons."

Personally, I think it matters little what colour poppy you wear.

So many young men and women have given their lives in Canada's military. So many more have come home grievously injured in ways that are visible and some that are not. We should remember their sacrifice and work to make sure that medical and psychological services are in place for those who return. Providing a decent pension and access to education and employment is a genuine way to thank a soldier for his or her service.

Some who fought in Canada's "Great Wars" were children who lied (while the military recruiters turned a blind eye) so they could fight for their country and so that they could be employed. All over the world, there are child soldiers being recruited through enticements and threats. On Remembrance Day, I think of all the young people who's future is eradicated or greatly compromised because of the scourge of war.

Thousands of men and women have suffered at the hands of there own brothers and sisters in the military. Since the WW1 and before, soldiers have died because of bad decisions at the top or at the political whim of government. Many have been sexually assaulted, only to face silence and retribution if they have spoken out. The military has been slow to address violence and mental illness within its own ranks. We must take a moment to remember those who have suffered and to celebrate those brave soldiers who've had the courage to speak out and to advocate for change.

You don't have to believe that every battle or even every war was just in order to be grateful. It takes nothing away from veterans to say that we need to do more for those who have come home. It's not disrespectful to remember war while calling for peace. And I know there are many veterans who would agree with me.

i positively like this

Among the many sentiments that can make me apopletic, the idea that if only women with breast cancer "stay positive", they will be just fine might just get to me the most.

I was pretty damn positive during my initial treatment for breast cancer and yet here I am. I remained postive through my five years of remission (and ongoing treatment) and I was relatively upbeat during my brain surgery, almost a year ago.

I think it's a good idea, generally, not to wallow in my sorrows because it's so much harder to live that way - but I don't think the positive live and the negative die. Not for a moment.

It's natural that we want to believe that survival after breast cancer is within our control and some things certainly are. But not everything. And I think that's why those of us living with breast cancer can make "survivors" feel kind of uncomfortable. We're they're worst nightmare.

There is a real temptation for news outlets and others wanting to highlight the positive during breast cancer awareness month (and at other times) by ignoring women with metastatic breast cancer completely.

katherine O'Brien  (of I Hate Breast Cancer) wrote to a local television station after just such an episode. Please take 5 minutes to watch. Your jaw will drop, I promise.

Click here to watch Breast Cancer Awareness. Stay Positive 2.0

I'm positive that I take great comfort and inspiration from women like katherine and others living with metastatic breast cancer who are not afraid to speak out.

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.

as it should be.

I had a doctor's appointment today. 

The right side incision (the one where they put in the new port) hasn't healed properly and the area around it is angry and red. There's a spot on my neck where they entered the vein that is also a bit infected. 

Despite my fears that I was being a worry-wart, I was taken seriously. The doctor took a swab of the wounds and gave me a prescription for an antibiotic. She felt around the area of the port to make sure that it wasn't tender. She thinks it's just a surface infection but if the port area gets sore or the infection seems to worsen, I'm to go to the hospital.

The doctor I saw was replacing my GP but works in her practice. She and the nurse I saw today seemed happy to see me and were genuinely empathetic and compassionate. None of my concerns (I also brought an ingrown toenail to their attention) were dismissed or belittled. They were patient and thorough. And the starting point of our conversation was that I know more about my own body and some of my medical experiences than they do.

When I left, I was practically crying with gratitude.

And then I got angry. Shouldn't this be the treatment that every patient should expect at every medical visit?

welcome to October

My Facebook and Twitter feed is filled with exclamations. No one can believe it's here. Neither can I.

Welcome to October.

Is it just be or is the annual deluge of pink crap just slightly toned down this year? Maybe I've just had my head under a rock. I was literally offline for a week and it's been longer than that since I've been in a store. I don't listen to commercial radio or watch television that isn't Netflix, so I've been pretty sheltered, so far. I'm thankful.

I'm still astounded at some of the awful pink stuff out there and I'll be featuring some of the best throughout the month, along with genuinely topical and even helpful information about breast cancer and the organizations and people who are out there doing good work.

In short, you can come here this month, if you're in need of some pink de-toxing. This is a pinxploitation free zone.

For today, here is a letter I wrote a couple of years ago, to Q on CBC Radio, that was the Letter of the Day.

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.

don't assume i'm wrong about this

My recent medical experiences have made me a bit cranky. 

Today, I called to find out how long it will take to replace my port, since someone has to come pick me up. At the beginning of the call, I clearly explained that I was having my port replaced and that I needed to know how long it would take.

Medical professional: "Are you getting a port or having one taken out?"

Me: "Both."

Medical professional (Sounding incredulous):  "Both?"

Me: "Yes, I already have a port and it has stopped working. I'm having it removed and a new one put in."

Medical professional: "Have you talked to someone about this?"

(This is where Tim, when I was relating this, said, "No, it was just an idea you had. You thought it would be fun.")

Me: "I have talked to C. Many times."

(pause)

Me: "The procedure is already set already set up. I just need to know how long it will take."

Medical professional: "Well, putting in a port takes three hours. Taking one out usually takes half an hour."

Me: "OK. Thanks. I'll say that they should pick me up 3.5 hours after surgery."

Why did that have to be so hard? Why couldn't she just answer me? 

I'm starting to become very annoyed with questions that are pretty much irrelevant to the medical professional involved. Just like the nurse who insisted that I couldn't possibly be on Herceptin, the questioner did not need to know any details. The appointment is booked. I'm having the procedure. Just tell me how long I can expect to be there.

I know this sounds a bit pettty. And I do want to say that 90% of the medical staff I've dealt with over the years have been excellent. I've just lost patience with the ones who don't even seem to try.

I wrote a list of "Do's and Don'ts for Medical Professionals" a few years ago. I know that it's been included in at least one package for medical students. Here's another I would like to add:

Don't assume that the patient is wrong.

Of course, common sense is required here. It's best to double check before running a test or administering drugs. But even that can be done in a way that acknowledges that the patient knows something about her own body, medical condition and experiences. 

When I first met my surgeon last year, he asked me why I had asked for the MRI that found the tumour. I explained that 30% of women with Her2+ metastatic breast cancer go on to develop brain tumours. 

The doctor turned to his student and said, "See? That's why I say we can learn from our patients."

Now, that's what I'm talking about.

done with the "good girl"

Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.

Sometimes that's a challenge.

I am, however, fundamentally, and through lots of conditioning, a good girl.

I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.

Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.

After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.

I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?" 

The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.

All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?

If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.

But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.

I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again. 

After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.

justifiably annoyed or overly sensitive? you tell me.

I read an article a little while ago about a Conservative politician who just finished treatment for breast cancer. The article was probably meant to make me feel inspired but instead I just go angry.

I felt guilty for not being more charitable (is that a word used in this sense by anyone other than those raised Catholic?) and disappointed in my own lack of empathy.

I bookmarked the story and decided to postpone writing about it until I could understand my reaction.

It's been a couple of weeks. I reread the article and got angry all over again.

I work very hard at not being judgmental of others' choices. This is a hard thing when you hold strong opinions but I do try my very best to underline that I've made what I consider to be the best choices for me. So why am I so annoyed at the choices of someone else?

Paula Peroni (the Conservative politician from Sudbury) is to be commended for her strength. Her approach to diagnosis and treatment seems to be very different from my own. She wore a wig, never stopped working, and told no one until after she had finished treatment. She seems most concerned that someone will think less of her for having had cancer. Perhaps that comes with being in politics.

While Peroni seems to stress that these were the right choices for her, the writer of the article seems to frame them as a goal to which we all should aspire. And Peroni herself seems to frame the path she chose as being the most virtuous:

"When you tell people you have cancer, "you put a responsibility on them they didn't ask for," said the longtime trustee with the Sudbury Catholic District School Board.

They care about you and worry about you, so you don't want to add to their burden.
'It's nice to tell people (about it) when I'm on this side of it so they don't have to do the guilt and the worry or the condolences or whatever it is they feel is necessary,' said Peroni."

We all have a right to privacy but someone who chooses to stay private is not morally superior or more altruistic than those of us who make our struggles more public. I don't think it's just a "burden" to share our stories. In my experience, people genuinely want to help and I think that helping each other makes us stronger individually and together.

There are many kinds and cancers and as many kinds of treatment. Some people get sicker than others from the illness and its treatment. Some need more help from outside the immediate family, for a whole host of reasons. There is no shame in this.

And finally, perhaps it's my own metastatic status that colours my response. We are immersed in a culture of pink and a belief that you've just go keep a smile on your face, go through it and move on - and if you can do it without missing a step, you are to be applauded. Those of us with mets very often feel invisible.

Is this all just my own baggage speaking? Go read the article. Come back and tell me what you think. I'd love to know.

Possibly gratuitous and definitely snarky addendum: 

"Peroni believes she is where she is supposed to be and if there was ever a time for Sudbury 
to go Tory blue, it is now." Does this "work that needs to be done" involve deep cuts to the health care system from which she has so profoundly benefited?