never a dull moment: the blood clot edition

On Monday, I got a call from the nurse who works with my oncologist. I had a CT scan last week, so the phone call made me I brace myself for the worst kind of news.

Instead, she said "You have a blood clot on your lung."

What unfolded next is a bit blurry but I know that I asked if there was cancer on the CT (no), whether this was life-threatening ("absolutely not") and what I should do next.

I was instructed to get myself to a specific ER (at the General Campus of the Ottawa Hospital, which also houses the Cancer Centre). They would be told to expect me. Tim and I gathered up our stuff, made sure Daniel would be OK and headed out the door. We were at the hospital in 20 minutes.

We then proceeded to wait for more than 6 hours to be seen by a doctor. I established that there was a note on my file, saying that I was coming in but that didn't seem to make a difference in my waiting time. When I finally saw a nurse, she told me that they didn't have a bed for me (I didn't think I was waiting for one) but that she would do a blood draw and they would give me a "loading dose" of the blood thinner that would attack the clot.

She also gave me Benadryl because I had an allergic reaction to the bracelet they'd put on me to alert everyone to my allergy to sulfa drugs.

I probably spent 5 minutes with a doctor. I was given a shot, sent home and told to expect a call from the Thrombosis Clinic in the morning.

We were at emerg for a total 7 hours, into the very early morning.

At 7:30am, I got the expected call from the thrombosis clinic. I was on the list for the morning but should come in "as quickly as possible" because they were "very busy."

This time I was smart enough to have a shower, something to eat and grab a coffee before going.

They were great at the Thrombosis Clinic. Everyone I dealt with was kind, patient, competent and had great communication skills. I learned that blood clots are very common in cancer patients ("It's our largest group of customers") and that my odds of anything bad coming from it went way down when I got the first dose of blood thinner.

I have been prescribed an injectable blood thinner (fewer side effects), that I am to administer daily for at least the next several months. I need to be careful about bruising and cutting myself because my blood will, of course, not clot very easily.

I'm already covered in bruises and have very thin skin (literally, not figuratively) from the Decadron. My stomach is several shades of purple and green at the injection sites (the one from the loading dose is huge and spectacular). I scraped myself on something on Tuesday evening  (I'm really not sure what) and I had to put pressure for a long time for the bleeding to stop.

But I'm already feeling better. And I know that my recent shortness of breath was caused by the clot, not cancer.

I learned that my oncologist spoke to the ER doctor on Monday night and had agreed that I would be streamlined through the process, given my shot and sent home quickly. Somehow that message didn't trickle down to the front lines. My oncologist was shocked and outraged.

I could  have been saved several hours.

Also noted: I was out of the Thrombosis Clinic in two hours; it was clean and had natural light and no one in the waiting room was hacking, bleeding or puking. They set me up to expect a long day but, relatively speaking, it really wasn't. There's a lesson in there about setting low expectations.

I still don't seem to be able to do that.

And even as I was going through this, I was very aware of the fact (and appreciative of it) that I was not going to be handed a bill at the end of the process.

i learned something from this one

This article explains why some of us get so annoyed when cancer "awareness" campaigns focus on saving the "girls" or the "tatas" or - well you know what I mean.

Lots of food for thought here and I learned some things about cisgender privilege and breast cancer.

From "Every day feminism, It's a longish read but very well done.

"4 Ways Breast Cancer Awareness Campaigns Can Be Sexist and Oppressive"

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!

inconclusive

Today's appointment did not work out as I had hoped, in that there weren't a lot of answers.

I was kind of hoping that I'd go in today, get the results from my test and talk about a plan of action for whatever is coming next.

It didn't work out that way.

I first saw a doctor who works with the oncologists. It wasn't my usual doctor and he had to be brought up to speed on where things are at with me. He was very thorough and very nice but I really wanted to feel like they were on top of things.

He had my CT scan and the attached report. There is still a spot on my liver and it's possible that it's a tiny bit bigger but they really can't tell if it's a new lesion or scar tissue. We'll just have to watch and wait.

My MRI reports were not ready.

They sent me for bloodwork, got in touch with the radiologist and that doctor looked at the MRI pictures with my radiation oncologist and medical oncologist, to see what could be determined that way.

The good news is that the spinal MRI was completely clear.

As for the brain MRI, apparently they took 1000 images and all have to waded through. The radiologist said orally that there is the possibility of a new tumour but he needs a bit more time. My oncologists say they didn't see anything they could recognize in the pictures we saw and that nothing is definitive.

It's even possible that the latest symptoms were caused by the Cyber Knife radiation, although there is not as much edema as they would expect if that were truly the case. The tumours that were zapped in December are still there but apparently that doesn't mean that the it didn't work, just that it's taking a while.

See what I mean? More questions. Few answers.

They were happy to have me take a little vacation and will see me when the reports are done, after I get back. The doctor said he'd arrange for an appointment "the week of February 27."

The cancer centre interpreted this as the week leading up to that date and now I have two appointments booked during the week that I am away. Seriously? It just can't ever be easy, it seems.

And I'm still on steroids, eating everything that isn't nailed down and otherwise revved up from the pills. 

the latest developments in the brain of Laurie K

I have been planning for ages to return to writing in this space and feeling a bit guilty about it. I've just been really busy with other writing, volunteering, having fun and getting healthy.

Ironically, what brings me back is a return of the cancer in my brain. The letter below is an edited version of one I sent out via email earlier this week. 

I am happy to have this blog. I just wish I had different news to share at this time.

Dear friends and family,

My last MRI revealed two new tumours in my brain. Both are the same area as before - the cerebellum. One is in my inner auditory canal and the other is in the cerebellum tentori (the lining separating the cerebellum from the rest of the brain). In mid-October, I began to have vertigo and an ear ache and sore throat followed later. Once ear infections were ruled out, I wasn't surprised to learn that the tumour that sits on the auditory nerve causes these symptoms.

Surgery is not on the table at this time. I'll be having Cyber Knife radiation to both spots on December 1, 3, 4 and 7. The additional dates (the last two times, I did Cyber Knife in one shot) are because the tumour in the auditory canal (IAC) is sitting on a nerve and very close to other nerves. The radiation oncologist wants to take his time and cause as few side effects as possible. Given that these can affect movement, feeling, hearing and of course the vertigo, I'm all for taking things slowly and with caution.

Tim and I have had two weeks or so to let the news sink in and we are doing OK. We spent the first few days vacillating between sadness, anger and despair (and watched a lot of Netflix) but have been much better since seeing the doctors, knowing we have a plan and that the doctors are very well informed and communicating with each other.

My medical oncologist was also telling us about various possibilities for next steps. There are some really interesting things on the horizon, in terms of crossing the blood brain barrier and viral treatment of cancer. As I said to my medical oncologist, "It's a very exciting time to have brain mets!" 

He laughed.

I am hoping hard  that by the end of 2015 the tumours are zapped to nothing and we don't have to go through this again any time soon.  Here's to a healthy, bike-riding, surgery free and zap free 2016.

I hope this is reasonably clear. Please feel free to ask questions and to talk about this - the boys know and it's not a secret.

With much, much love,

Laurie

The dogs in coats have nothing to do with the blog post, except that they provide distraction from a heavy message. Dogs in coats make me happy.

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.

twilight zone

Week two was harder than week one. This is partly because I am more impatient and partly that I think this is what happens at week two. It's two steps forward, one step back.

I had my staples out on Tuesday. And then slept for hours.

I'm walking a little further every day.

I still have trouble concentrating and haven't read anything. I have a writing contest to enter for the first time and I am not sure I can do it.

I watched Baby Mama this week, finished Brooklyn NineNine and Midsomer Murders.

My head hurts. Apparently it's quite swollen. I'm also told there are sutures inside my head, which is kind of weird.

Last week I had the CT scan for Cyber Knife radiation. I made them double check that they could do it and make the mask, despite the fact that I still had my staples. They told me it was not a problem. Today I got a phone call - cyber knife is re-scheduled and I have to go in next week for another CT scan because they can't use the one with the staples.

I am in the twilight zone.

it's deja vu all over again

I've been struggling to write this post for the last couple of days. Two nights ago, a friend of my son's was saying that he finds it much easier to write when he's writing to someone. My spouse shared that he once had a university prof suggest that he get over writers' block by starting his essay as a letter.

To that end, I wrote an email to my loved ones today and, when it was done, I decided that it was clear enough to share here, as an open letter to anyone who reads this.

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

I saw my neurosurgeon on April 22 and he has decided that brain surgery is my best option right now. It's been scheduled for May 5.

The communication around all of this has been terrible (this is the same MRI that he said "looked better" a short while ago). From what I am able to understand (Tim, feel free to jump in here), Dr S (the neurosurgeon) took the images to a different radiologist who he trusts after feeling that he was getting inconsistent information. The two of them decided that it makes sense to take action.

I now have 3 spots on my brain: the mass on the site of the original tumour, a tiny spot deeper in the cerebellum and a new one, close but not attached to the original site (this is the one that is really of greatest concern). From my reading of the MRI reports, this one is either on or very near the lining of the brain.

On May 5, the surgeon is going to attempt to completely remove all spots and then biopsy them. While there is slightly higher risk of complications this time around, the recovery time will likely be a bit better than last, if all goes well.

The lousy way this has played out means that my fantastic plans for this spring have been scuttled. I'm still trying to figure out how much (no bike trip 3 weeks after brain surgery...) and to figure out how to organize our lives so that things go as smoothly as possible.

The kids know as of last night (didn't want to tell Daniel on his birthday) and they are amazing young men. Truly. And Tim - I actually don't have words - is beyond patient, loving and supportive. This is so hard on these guys but they are very good to me.

My pre-surgery MRI is on April 27. I have treatment April 28 and my pre-op appointment on April 30. If memory serves (and there is much I don't remember about last time, including the entire first season of "The Good Wife" I watched in recovery), I won't find out the time of my surgery on May 5 until the day before.

I think you know everything that I do, now. Please, please forgive the group email. It is so much easier to get this out once. I'm stressed but in a reasonably good place and happy to try and answer questions or just chat.

Thanks and with much love,

Laurie

p.s.: It's actually a nice feeling to need to send out a group email. I have so much support. It's good to remember that.

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.

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.

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.

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

bloggers who live with mets and write about that and other things

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.

Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 

Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.

In no particular order:

Katherine O'Brien  I Hate Breast Cancer 
@ihatebreastcanc

Catherine Brunelle Bumpyboobs 
@Bumpyboobs

Anna Craig 
@annamecraig

Lisa Bonchek Adams 
@AdamsLisa

The Sarcastic Boob 
@sarcasticboob

Ann Silberman Breast Cancer? But Doctor...I hate pink! 
@ButDocIHatePink

Jen at Booby and the Beast 
@JCampisano

Carolyn Frayn Art of Breast Cancer 
@CarolynFrayn

Lulu Change Living Life Furiously 
@LulyChange14

Uppity Cancer Patient 
@UppityCancerP

Telling Knots 
@knottellin

Kate Kate Has Cancer
@KateHasCancer

Jill Dancing with Cancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy
@IMBCadvocacy

Susan Rahn, StickIt2Stage4
@StickIt2Stage4

Sarah Illingworth 
@Illingpig

Victory Over BC
@MetaThriving

Phyllis
@Groz_P

Jude Callirgos
@JudeCallirgos

FUBC
@FUBreastCancer

Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight
@nicolejasien

Honorary club member: 

Nancy Stordahl at Nancy's Point
@NancysPoint

Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.

The organizations that don't ignore us:

Metastatic Breast Cancer Network
@MBCNbuzz

Metavivor
@metavivor

Canadian Breast Cancer Network
@cbcn

ReThink Breast Cancer
@ReThinkTweet

This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.

Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).

I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.

wishing you continued good health

As, I mentioned in my last post,  I've been working on a campaign called Fair Cancer Care. We're hoping to create awareness, followed by change to how chemotherapy drugs are covered in Ontario. We launched in time for the provincial election campaign, in the hopes that we can get our local candidates to take an interest. You can find out more at FairCancerCare.ca.

The people behind the campaign are a group of Ottawa residents who have all been affected by cancer. We've all been promoting the hell out of this campaign as the election date draws nearer. My good friend Andrea is a driving force in our group. Her creativity has been key to getting us moving and, as someone who lived through breast cancer, she gets how crucial it is to ensure that everyone gets the best care available.

Yesterday, Andrea had the following exchange via email with someone she knows slightly, who'd been asked to sign our petition. I share the following exchange with Andrea's permission. For the purposes of clarity and my own amusement, we'll call the other person Ms. Smug Hubris.

SH: "I don't believe that cancer causing radiation and toxic chemotherapy is the cure for cancer. Healthy whole food and a healthy lifestyle is."

Andrea: "I thought the exact same thing before I got it. Wishing you continued good health."

Although my response was much cruder (rhymes with "Oh duck off"), I think Andrea was perfect. While Ms. SH is entitled to her opinion, I'll continue to fight for the very best cancer care to be available to everyone. 

Because the thing is, anyone can get cancer. I've known several extremely healthy living, eating and drinking people who've been hit by a cancer diagnosis. I know people who did everything right before and after that diagnosis and died anyway.

We need a cure for cancer. But until then, we need the very best chemotherapies to be available as soon as they are approved. And everyone should have access to the treatment their oncologist prescribes, regardless of ability to pay.

Ms. Smug Hubris can chose whether or not to seek treatment, should she be unlucky enough to get cancer. We'll keep working to make sure it's available.

To learn more and sign our petition, please visit FairCancerCare.ca. You can like us on Facebook, too.

reluctantly gluten free

Last fall, I got tired of feeling crummy all the time. I'm sure the fatigue and the gastrointestinal issues were exacerbated by the round of antibiotics I'd had to go on after my surgery but I just wasn't getting better. I needed to give myself a chance to heal.

In the spring, a cousin and her spouse had been on the Brown Rice Diet. Laura also happens to be a naturopathic doctor, so I had asked her about it at the time and got her to send me the info. It's not a diet in the weight loss sense of the word but more of an elimination of all potential allergens. For three weeks, the only grain I ate was brown rice. I ate chicken, fish and a bit of lamb but no other red meat and no shellfish. Alcohol, dairy, sugar and all processed food were also verboten - but I could eat as much of anything as I wanted.

At the end of the first week, I was ready to chew off a limb. Despite consuming lots of food, I was hungry and irritable. I almost gave up. Instead, I increased my protein intake and two days later I felt flat out amazing. I had tons of energy, no cravings at all (I sat in front of a table full of wine, chocolate and cheese at book club and sipped sparkling water, not minding at all). I lost 10lbs, which I'm told was water weight, as I let go of sugar induced inflammation.

At the end of three weeks, I reintroduced grains, like quinoa that don't contain gluten. I was fine.

I introduced bread and got sick. My son was also ill, so I decided it might be a coincidence, and that I should take gluten out of my diet and reintroduce it later.

I had no reaction when I reintroduced yogurt. Or cheese. I re-introduced gluten and got sick again.

Over the holidays (Chanukah, Christmas, New Year's...) I ate pretty much whatever I wanted. I felt sluggish, bloated and irritable and by the new year, was ready to eliminate gluten again.

After a couple of weeks, I didn't feel fantastic but I didn't feel terrible. Mostly, I was irritated that I couldn't eat gluten. I missed Tim's home-made bread. I missed the chocolate cookies from the Wild Oat. I missed beer. I started to wonder if there was a point to all the deprivation.

Then came Tim's birthday and I decided to make Too Much Chocolate Cake. And, after three weeks without gluten, I had a giant slice. Then I had another one the next day. And the day after that, I was  a mess. My distress was not so much gastrointestinal as emotional. I was irritable angry furious. I was depressed. I was in despair. It was awful. And then, suddenly, it was over. I felt fine again.

So the gluten is gone for good (Tim says that the scientist in him would love to give me a slice of chocolate cake, just to see what happens but, out of self-preservation, he thinks that would be a bad idea).

I'm still figuring out what it means to be gluten free. Sometimes, I'm surprised by how easy it is. Other times, I feel frustrated that it feels complicated.

I don't feel amazing.. To do that, I guess I'd have to cut out the alcohol, sugar and processed stuff. Maybe that's next but for now, I'll just try and keep it to a minimum.

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)

learning to breathe

Last year, when I was diagnosed with a brain tumour and went through surgery, I was fine.

I mean, the surgery was brutal and recovery was excruciating but emotionally, I was mostly OK.

A year later, except for the back of my head (which is a little bit sensitive), I'm fine physically but the emotional part has become more of a challenge. In the last few months, it's become clear to me that I'm only going to work through it all with a little outside help.

So, I'm seeing a therapist. I know it's the right thing to do and I like and instinctively trust the woman I'm working with but it's not easy at all. 

We've talked about how all my life, I've been pretty good at getting along by stuffing a lot of my fear and anger into an emotional closet. This has, for the most part, been a remarkable coping mechanism. However, no door is completely effective at shutting out the bad stuff and, when it leaks out through the cracks, it manifests itself in ways that can take a very large toll on the body and spirit. At this point in my life, my emotional closet is so full of anger and fear that the door is in danger of bursting wide open. 

I'm afraid of losing control.

I'm embarrassed and ashamed that some of it is so ugly.

I'm scared of taking my darkest thoughts and holding them up to the light.

But I think it needs to happen.

I've also been thinking a lot about how I live most of my life in my head, to the point that I'm really quite disconnected from my own body. At my very first session with my new therapist, she pointed out that when I talk about my fear of another tumour or about certain things from my past, I hyperventilate. And I don't even notice.

She spent most of the second session interrupting me and telling me to take deep breaths, hold them and then exhale slowly. She asked me how I was feeling and I said "Impatient."

What I thought was "I'm paying all this money per hour, so I can sit here and breathe? I can do that at home."

Except that I don't. So she's given me homework. I have to spend two minutes a day, twice a day concentrating on my breathing (we started with four minutes but it felt like an eternity).

In.

Out.

Just taking in oxygen. It's so basic. Yet here I am, 46 years old and learning to breathe.

"let's hear it for November!"

I get really (and somewhat irrationally) nervous at this time of year. 

I found the lump in my breast on December 2, 2005.

I was diagnosed with liver metastasis on November 24, 2006.

And last November, was all about trying to decide what to do with my brain tumour. I had surgery on November 27.

This is not my favourite time of year.

But Katherine O'Brien left a comment in yesterday's post and linked to this new video that she made. One very good reason to embrace November is that it's no longer Pinktober!