stable and unremarkable. my new favourite words.

every week. in pictures.

I have now had 24 treatments of Intrathecal Herceptin. A few weeks ago, my friend Karin came and took photos. They were for me (because I can't see my own head) and they helped me a lot to understand the process. It's occurred to me that some of you might like to see them too. 



Every week, I am placed in a private room. It's been the same room every time and I have come to think of it as mine. I get the usual "pre-meds" of intravenous Gravol (dramamine) and Demerol (meperidine) that I have had for years with Herceptin to keep from having a reaction. 

My oncologist (only doctors are trained to deal with the Ommaya Reservoir), comes in after the meds have kicked in. This is what it looks like before treatment (after my hair is combed out of the way).

Dr. G shaves the Ommaya to sterilize it.

Iodine is the next step in sterilization. Rubbing alcohol comes after.

  

We joke around and laugh a lot at the beginning of every appointment. I look forward to that
part. The atmosphere turns very business-like during the actual treatment. I appreciate that, too.

Before treatment, a sterile cover is put on my head, with a convenient hole in it.

The needle is injected in the Ommaya. It doesn't hurt. Really (remember, that's iodine. I am not bleeding).

Before anything can be inserted, brain fluid must be extracted. This, to me, is the really freaky part.

I will be getting 60 mg of Herceptin, which is about 30 ml (about 1 fluid ounce), so that amount of cerebrospinal fluid is what is taken out of my brain. It will be sent for testing, to see if there are detectable cancer cells. It’s a good sign that the fluid is clear and so far the tests have been negative.

Then the Herceptin goes in. As with the extraction of fluid, it's done over several minutes.

I am the first and only person to have this done in Ottawa, so sometimes I am asked if it's OK to have staff in to observe. I always agree to this.

When it's all over, the needle comes out.

And we are done.

The oncologist leaves and there is a 30 minute observation period. The nurses “take my vitals” after 15 minutes and at the end of the half hour. Then I can go home (except every 4th week, when I stay an additional 90 minutes for the intravenous infusion of Herceptin).

This week, I have a spinal MRI and the following week one of my brain. 

I hope treatment is working.

(Photo credits: Karin Jordan)

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"

time is running out

This is one of the very best and most powerful adds I have seen on breast cancer. And that is saying something.

It's about living with metastatic breast cancer, less than 3 minutes long and very, very worth it.

grieving and treatment

My father passed away a couple of weeks ago (the night before I started IT Herceptin, in fact). His service was last week. It was small and private. I was very impressed with the priest who had never met my father but listened to my mom and my sister and said some very thoughtful things.

The end of my father's life was not an easy one and, in his last days, I was unable to get to the hospital. I didn't (we didn't) want to put my treatment in jeopardy by exposing myself to hospital germs. 

It was the right call but it was hard and it made everything seem less real and further away. 

I have realized that grieving, or working through, a death is perhaps not so compatible with intense cancer treatment. I need to stay focused, informed, strong and clear as we go forward.

I need to keep putting one foot in front of the other and get to treatment every single week. I need to build a relationship with a new oncologist (who I had never met before starting the IT Herceptin). I need to figure out what I wish to do when it comes to increasing doses and deciding how to proceed (my new oncologist is very thoughtful but also consultative. He acknowledges that we are smart and well informed - and that there is a paucity of information out there). 

I need to walk that line between getting stuff done, having some fun, staying vigilant and getting enough rest.

It turns out that my regular oncologist, who has followed me since 2006, is unlikely to return for several months (I do not know the details as to why and don't feel that I am entitled to them. Something very hard must have happened and I hope that he is getting what he needs). What I didn't realize is that the other doctor, who convinced my oncologist to go the route of IT Herceptin, is finished at our hospital and is now in Boston. At least he is reachable via email by my medical staff but he's not here to question and to reassure.

All that to say that I want to grieve. I want to hold up my emotions to the light and and think about what this recent loss means. I don't cry easily and it has yet to really happen.

The service helped. And I have been thinking of the things that were important to my father that he passed on to me: intellect, honesty, respect for privacy, a love of literature and a curiosity about the world and it's differences. 

And despite all that he went through at the end, I know that he would want me to keep putting one foot in front of the other.

Two of my boys out for our meal after the service.

onward

There was a bit of a rocky start but I seem to be moving forward with treatment. Every Wednesday, for the rest of the summer, I will be getting Herceptin, injected through my Ommaya Reservoir. I'm not the first in Ottawa to have an Ommaya but I am the first to have Herceptin injected in this fashion. I'm hoping hard that it's working.

There was some confusion on my first week. First I was told that treatment would be delayed by a day and administered by an oncologist other than Dr. G., who has treated me for for 10 years.

Then, on the day of treatment, I found out that Dr. N., his replacement, had thought I had been through this a few times and was taken aback that it was my first treatment. I also learned that it will be weeks before my own oncologist returns.

I want to be clear about the fact that there is no way that Dr. G. would disappear like this, unless it was a personal emergency. I am missing him like crazy and upset that he's gone but I believe that he had no choice and I am want things to be better for him soon.

That fact didn't stop me from freaking out a little.

Dr. N. was incredibly adept with the Ommaya and I really liked his manner. He was thoughtful, gentle and clear. He was unsure how we were going to proceed, given his own schedule and that of other staff. However, when I said "It's disconcerting, when you've been told that you might only have months to live, to learn that there is no plan for treatment for the next several weeks."

He left, got it sorted and came back with a schedule: I'm to be at the hospital every Wednesday morning until my MRI in August.

By my second appointment, things had become even clearer. Dr. N. had spoken to a third doctor who works with Dr. G., and who has worked on trials of this treatment and really supports it. He was getting married on the Saturday after my first treatment and was probably on his honeymoon during my second). Dr. N. knew the plan and had been reviewing the literature and was ready to share that with me.We will do the same dose for three weeks and then double it for 3 more weeks. 

After that? I don't know but knowing this much is very reassuring. Next week, yet another oncologist will administer the treatment. Like Dr. N, he is not a breast doctor but hopefully he knows his way around an Ommaya. 

I didn't react to the Herceptin either time. This is good but perhaps also bad, since I reacted before the Herceptin worked on the rest of my body.

I have to trust (and do my own research). I'm trying. What other choice do I have?

It's been a rough couple of weeks, for reasons unrelated to cancer. My father passed away the night before my first treatment. It was not entirely unexpected but it was still painful for everyone and something that I think we are all still processing.

Today is Canada Day in Ottawa. I'm not crazy about crowds and it is currently pouring. I am sitting on my couch as I type this. I think it's exactly where I need to be.

patience

I am being taught a lesson in patience. 

I finished the last of my radiation on December 7. They told me it would be two to three weeks before I feel like myself again. It's only been 11 days but I feel so frustrated that I still can't do much, especially at a time of year when so much is happening and there is so much to be done.

I am definitely on the mend and have felt that way for the last few days. It's nice to have a bit of energy but I have learned that it goes suddenly. I can go out to do an errand and before I am done, I can barely make it back to the car. I need to be more patient with myself.

The ear ache and vertigo are not gone. This means nothing. One of the tumours was (note my optimistic use of the word "was") sitting on the nerve for the Inner Auditory Canal. The tumour could be gone and there could still be nerve damage, which is either temporary or permanent. Only time will tell. I need to wait patiently to see if I will ever be symptom-free, or if I just need to figure out how to cope.

I don't see the radiation oncologist until middle of March. I won't learn until then what the status is of my brain and if the treatment worked. Pictures are meaningless, if there is still swelling from the radiation, so I need to be patient about this too.

I had a bunch of other tests before radiation. My bone scan and CT of my chest came back clear (Hooray!) but my abdominal CT showed a very small spot on my liver. It could be scarring (my liver has a lot of scarring from previous tumours) or it could be a new metastasis. The only way to know for sure is to do another CT in a couple of months, to see if anything has changed. I see the medical oncologist again in mid-February and will have done another CT before then. I need to be patient about this too.

I have never been very good at patience. I was the kid who shook the presents under the tree and ripped at the corners. I wanted to know the sex of my kids, as soon as I possibly could (although fate intervened to teach me a lesson). I am the queen of instant gratification.

I'm realizing though that I can't wait until I know more to start doing the things that are good for me. It's time to start taking Vitamin D and eating vegetables again (it really is too damn bad that potato chips are not a vegetable). I also need to cut myself some slack about what I can't do.

And I need to be patient.

the wisdom of my therapist

I've been seeing a therapist for a couple of years and, at this point, she knows me really well. I honestly don't know how I would have lived through the last couple of years without her and only wish I had started working with her sooner.

I've been thinking of some of the things that I have learned from her.

Patients who advocate for themselves have better outcomes. My therapist used to work in a hospital and this is something she learned then. I find it very comforting, especially as I make call after call to make sure I get the information I need to know how I am being treated and why. I feel so much better when I know what's happening. It's good to know that studies bear out my gut instinct.

It's almost impossible to have a panic attack if you are breathing. In one of our earliest appointments, she had me stop talking and take the time to breathe deeply. I felt first impatient and then much calmer. I very often forget to breathe when I am stressed, or I breathe very shallowly, and if I remember to breathe slowly and deeply I immediately feel much better.

Pay attention to what your body is telling you. This is especially true if, like me, you tend to live in your head. As with breathing, it's easy to ignore a headache, tense shoulders or anxiety gnawing away at the stomach. I've had to learn that, somewhat counter-intuitively, ignoring these pangs does not make them go away. They need to be noted and even held up to the metaphorical light and examined. As she keeps telling me, the body and the mind are very connected. Not in the sense that you can will yourself better but if you pay attention, your body can be telling you that something is wrong or that you need to slow down and take care of yourself.

Talking about something, even your worst fear, doesn't make it happen. This should be kind of obvious but I think lots of us are guilty of not saying things out loud because we are on some level scared that we will make them happen. Of course this isn't true and talking about a fear openly can make it lose some of it's power.

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.

others' eloquent voices

I was actually doing much better between when I blogged last time and when I went in for CyberKnife radiation last Thursday. I was walking and eating (and had even been out for dinner once and gone to book club). I was still needing to rest a lot but I could see the improvement in every day. And that was heartening.

CyberKnife was a major setback. I remember that it was last time, too (so much so that I never really wrote about it - just wanted to move on). That's just how it goes for me, I guess. I had brain swelling, headache, nausea, loss of balance, fatigue (yet little sleep) and a very odd taste in my mouth.I still do. But the light is at the end of the tunnel (I think it took a week last time and it was been 4 days) and I will soon be able to concentrate - and to live again. I know it.

Meanwhile, yesterday was "National Cancer Survivor's Day" in the US (and supposedly around the world, including in Canada). I missed it but lots of people with mets and who post about mets did. Here are three good ones. These are particularly eloquent. Something to think about.

National Cancer Survivors Day® & Why I’m Just Not that Into It (by Nancy Stordahl at Nancy's Point) 

Not a Survivor (by the Cancer Curmudgoen at The Cult of Perfect Motherhood)

The Trouble with "Survivor" and the Lack of Boundaries (by Susanne at Metathriving: the blog) 

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.

earth day baby

April 22, 2003

April 22, 2015*

Daniel is kind, funny, smart, loving, loyal, thoughtful and self-aware. I couldn't be prouder of being his mom.

*I can't resist bragging. He was all dressed up on his birthday to do a presentation at the Ottawa Regional Heritage Fair. His group's presentation was "The Truth about Residential Schools" and they won a prize. More importantly, they chose this topic, researched it thoroughly and presented it with great sensitivity and clarity. I know I'm biased but I was a little blown away.

driving dreams

As some of you know, I don't drive. I've had several false starts. I even passed my in-car test when I spent a summer in the Yukon in 1986 but didn't take the final step to have that license validated.*

In total, I have had a "learner's permit" three times, taken drivers' education courses twice (not finishing either time) and taken countless in-car driving lessons. There have been many people who have offered to drive with me so I could practice who have not wanted to repeat the experience.

Still, "get drivers' licence" has been carried forward on my "to-do" list for many years. I've never quite given up on the idea but I never seem to follow through. I think I have a phobia at this point.

A while ago, I had two dreams in the same night (before the latest round of MRIs and meeting with the neurosurgeon. My brain worries were present but not front and centre). Both were about driving and were so clear that I wrote them down when I awoke. If you know anything about driving dreams, I'd love to know what you think.

Dream 1:
I had borrowed a red van from a friend. It was parked in front of the neighbours' across the street . This is not a legal parking spot. I decided at the last minute that I shouldn't drive the van on my own and I went to get Tim (my spouse). When we got back, there was a big truck parked where the van had been surrounded by workers loading it up. The red van was nowhere to be seen.
I asked one of the men unloading the truck about the van and he told me they moved it one street over because it wasn't supposed to be parked there and they'd needed the spot. He told me, raising his eyebrows, that I had left the keys in the ignition and gave them to me.

Dream 2:

I was at a strip mall with Daniel (my 11 year old) and we got into a grey four door sedan, him on the driver's side and me on the other. We started going and I kept saying to Daniel, “Sit up!” “Press the brakes!” We drove through the parking lot without hitting anything or anyone and then through a 4 way intersection and up a side street filled with pedestrians. We even drove by a baby crawling along the side of the road, passing very close. The baby seemed oblivious. The street ended at the top of a hill and we coasted to a stop.
We got out and folded the car up and wheeled it like a wheelbarrow back down the street. I went to find Tim so he could drive us home. I was very relieved but also worried that someone had reported our license plate or caught us on camera.

I borrowed a book from the library about dreams. There was a whole chapter on cars that didn't really speak to me, except for the following "the movement of your car is a metaphor for the way you're trying to make progress in life and the extent to which you feel in control." There was nothing really helpful about kids (nothing about narrowly missing babies or having your kid drive the car) and nothing about a fear of driving.

A key thing about both dreams is that while they were anxiety provoking, both had positive outcomes. I got the van back in the first dream (even though I'd left keys in the ignition) and no babies were crushed under the wheels of my car in the second. It's clear that I'm feeling a lack of control but there must be something good going on between my ears if things ended as they did. It is interesting to me that, in both cases, I felt embarrassed and worried about getting into trouble.

What do you think? I'd love to know about any similar dreams folks have had and where you have turned to find answers.

*The driving tests in Ross River, where I was living, were at that time administered by the RCMP. They gave me a letter that said I'd passed but I was supposed to take it to White Horse to be validated and get an official licence. I never got around to it, perhaps because I didn't really believe that I deserved to have passed. Ross River had only one 4-way intersection, no traffic lights and no place where I could parallel park. Still, I managed to make a right turn into the left lane, facing what would have been on-coming traffic, had there been any.

I might have been a little intimidated by the armed police officer administering the test. I still can't believe he passed me.

too much. all at once.

Last week, I had CT scans* and treatment on Tuesday, a brain MRI on Wednesday and a bone scan on Thursday. 

There was also an incident on Tuesday evening with one of the boys, which culminated in the following text from my beloved: 

"I now know what projectile vomiting looks like. Can you check Groupon for car detailing deals?"

All is well (we've come to realize that vomiting is an excellent response to anaphylactic allergies) but if none of us has to see the inside of a hospital for a while, that would be just fine.

As I type this, I'm reminded how grateful I am for our health care system. I shudder to think how big the bills would have been, if we had to pay them. We don't have to justify any of these costs to an HMO. We needed care and we got it. 

*I have the results of the CT scans. My abdomen, pelvis and thorax are all still free of visible metastatic disease. 

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

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

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

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

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

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

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

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

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

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

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

looks much worse than it is

On Saturday night, I was the victim of a freak knitting accident. Well, I wasn't actually knitting at the time, I was pulling a circular knitting needle out of a basket and the end sprung loose and hit me in the eye.

It stung like crazy when it happened but the pain soon went away. There was a little bit of blood but that stopped quickly, too. I called Telehealth, which was very reassuring but ignored their advice to go to Emergency. After consulting Dr. Google, I decided that there is no treatment and the wound will heal with time. And if the biggest risk is infection, I was not going to the ER to sit with a bunch of sick people for hours, only to be told I didn't really need to be there.

 

I saw my GP today, who reassured me that all will be well. My vision is fine, the wound is healing and I'm basically "very lucky". I could just as easily have poked the iris, which would have been a whole different story. She said emphatically that I made the right call re the ER and added "You have no idea how many people are sick right now. In fact, get out of here. And sanitize your hands on the way out. You don't know who was in here before you."

I posted the above photo on Facebook and much hilarity ensued. There were multiple references to "extreme knitting". One friend said, "It's all fun and games until someone loses an eye. I would like to watch you knit. It must be quite the workout." And the best: "Can't you take up a less dangerous hobby? Bungee jumping or cliff diving maybe?"

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.

late to the party

My last post was called, "just under the wire." I sense a theme developing here. Perhaps it's better to get things up at the last minute or even late, rather than not at all.

Last Friday was Halloween and it was a milestone for my family - the first time in 16 years that my spouse and I were home together all evening. So weird.

Sacha dressed up for school, then helped a friend with his haunted house and watched Shaun of the Dead. He ended the evening with a midnight showing of the Rocky Horror Picture Show. We didn't actually see him from the time he left for school in the morning until we heard him and his friends come in after the show. We got some of the details over bagels the next morning (a few of the boys slept over). It sounds like it was a great evening.

Bob from Bob's Burgers

"Best Group Costume"

For the first year ever, Daniel went Trick or Treating without an adult. Two of his friends came over after dinner and they went to collect two other friends in the neighbourhood. They trick-or-treated for a while and then went to one boy's house to watch The Nightmare Before Christmas and Beetlejuice. Daniel came home tired and euphoric, with the smallest bag of candy I have ever seen on Halloween. Clearly far more time was spent walking and talking then actually trick or treating. It sounds like a great evening.

Space Cowboy, inspired by Sparks Nevada

The division of labour in our house was always such that I stayed home and gave out candy and Tim went out with the boys. This was my choice. Perversely, now that I will never get the chance, I wish I had gone out trick-or-treating with my kids at least once.

It wasn't a relaxing evening in our house. Toby, the dog we adopted in May, barks when the doorbell rings or someone knocks. This happens when he thinks he hears knocking (the other dog might just be scratching herself) or when he hears the doorbell on TV. Sometimes, he even barks when he hears somebody come down the stairs in the house. So Halloween? Drove him crazy. And he whipped Lucy into a frenzy. By the end of the evening my nerves were raw but the dogs seemed pretty happy. I think they had a great evening.

Gratuitous photo of Lucy (the co-barker) from last Halloween. The dogs wouldn't sit still
long enough for a photo in this year's Halloween hats.

I'm pleased to announce that I didn't eat any Halloween candy this year. But I might have had a whiskey. And some cheezies. They go surprisingly well together

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.