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.

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.

it's october!

I'm fine and I know I owe an update but I could't let this month pass without sharing some the best that's out there when it comes to writing about pink ribbons.

To begin, here's one from Breast Cancer Action (thanks to Kate for drawing my attention to this one).

The post is by Jeanette Koncikowski. Here's an excerpt. 

"When I start talking about my concerns about the pink ribbon, people often ask me what my problem is (not in that seriously inquisitive kinda way, but in the seriously, you are taking issue with THIS?! kinda way). They equate questioning this symbol with a lack of support for women living with and who have died from breast cancer. My problem is that pink is a color and not a cure. The pink ribbon has been corrupted. Corporations, not community, have become the primary promoters of the pink ribbon. Corporations are exploiting our collective generosity and concern for breast cancer patients to make a profit. Many of these companies are not transparent about which breast cancer charities or research, if any, are benefiting from our purchases.  Other companies are pinkwashing, claiming to care about breast cancer (often evidenced by placing a pink ribbon on a product) even though their product actually increases a woman’s risk of breast cancer! There are also countless pink ribbon promotions that degrade women by objectifying their breasts and bodies. Campaigns focusing on saving the boobies, the ta-tas, and second base send the message to women with breast cancer that saving your breasts is more important than saving your life." 

The first sentence of the paragraph of above really resonates with me. Most people who buy pink ribbon stuff just want to show there support. I really don't want to diminish that. It's just that there are better ways of doing that and the author does a pretty good job of explaining why.

There is so much more awareness about Pinktober and pinkwashing than there was when I first started thinking about these things in 2006. Is there any good writing you'd like to share? Please post links in the comments section!

update on the fly

I am finally feeling like myself again. I realized that today, in fact, despite the fact that I have a cold, gifted to me by my children.

Since I last wrote, I had a wonderful week in Florida. I then attended my son's Grade 6 "leaving ceremony" and had treatment.

Today was spent attempting to get ready for a little family vacation. There is so much catching up to do that it seems a little silly to be going away but it will be good for us.

The neurosurgeon says all is well. No heavy lifting or dyeing my hair for three months. My head still hurts enough to need Tylenol a couple of times a day. I have an MRI at the end of August.

I rode my bike to an appointment this week. It was just four minutes away but I forgot my lock so I had to come and go twice. It felt really good.

This week will involve some long walks. Maybe I'll even start running again. 

I need to talk to my oncologist about what might come next. I need to stop worrying about what might come next.

I need to enjoy the normal.

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) 

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.

for tim

In 1991, Tim and I, newly in love, had just moved to Toronto. Very soon after, he left on a pre-planned trip to the West Coast of the US and Canada. When we were re-united three months later (an eternity when you are 24), I had my own home, my own friends, job and way of doing things.

We were still madly in love. We joined up some things but continued to lead our own lives with separate interests and friendships in addition to the ones we hold together. This is why it struck us both as so very funny when, on our wedding night in 1996, after all the madness was over, I got quite drunk on all the left-over free wine (our guests were not big drinkers; my friends and I got pretty plastered).

I remember sitting in the stairs at the Arts and Letters Club, in my boots and party dress, head in my hands and saying to Tim, "You do the thinking for both of us."

We both knew I meant pay the bar-tenders and the venue but to say it on my wedding night, after all that had come before, struck us both as highly amusing.

Flash forward 24 years, through an unbelievable amount of change and trials we could never had imagined. When I awoke from 9 hours of surgery, the very first words out of my mouth were "Where is my husband? I want my husband!" - and I would not shut up until they let him come to me.

With all the drugs in my system, the very first and only thing I wanted was this one man. There will always be so much more to both of us together and on our own but that I would say those words when I woke were pretty damn definitive.

Poor Tim. He's stuck with me.

healing

Waiting for surgery

In the end, I was in surgery for 9 hours. It was hard but every day was a little better. And by Sunday night, I was home.

7 inches of staples

Dr. S doesn't shave his patients before surgery.

A shiner that appears to have been caused on the inside.

I have no idea why there are staples in my forehead.

All three spots were biopsied and then removed. The one at the original site (that has caused the roller coaster we've been on since the summer) was necrotic tissue. So was the new one that had just appeared, not too far away. But the other one, the one nearer to the brain stem that was a bit hard to see from different angles? That one was breast cancer.

It's gone now and I have been fitted for a mask and will have cyber knife radiation on May 26.

One thing I have come to realize is that all of this is as much of an art as a science. There are no specific directions. But I'm here. 

I'd better heal well and then make the best of it.

it's on

Tomorrow morning. I have to be  there at 6am. Surgery scheduled for 8am (when Tim will be kicked out of the hospital and forced to go to Costco).

Tim will be updating, as he has news on Twitter (as he says, his stream will now be news of me and how much he hates the drivers at Lansdowne). Don't look for too much too soon, as the surgery has been booked for 7 hours, so he's unlikely to have news between when he leaves me and at least 3pm or so (last time it was 9 hours. Sometimes, it takes longer and it doesn't necessarily mean anything went wrong).

Tim will likely have biopsy results of all three spots once the surgery is done but I have asked him not discuss this until he and I have had a chance to talk.

I'll be in the hospital for 3-5 days. I should be ready for visitors by Friday but please check in (over email or text) before coming, 

Wish me luck. See you on the other side.

2 more days in the sun

Yesterday, I had the best massage of my life. During my appointment my phone was off. When I turned it back on, there was voice mail.

My surgery was delayed for two days until Thursday, May 7.

Maybe it was the massage or maybe it was the chance to have two more days to enjoy the beautiful weather we have been having but the delay didn't bother me at all. It helps to remember that not much bumps a brain tumour - whoever had surgery instead today must have needed it very badly.

So today, I worked my way through my to do list, walked the dogs, puttered a bit and had a visit with an a old friend. We had a wonderful dinner, ate Dilly Bars in the back yard and just hung out. It was good.

I can fill my anxiety building again and I know the inevitable was just postponed but it's been nice to have a little extra time.

pre-op

Some people need to gain some interpersonal skills.

Yesterday, morning I had my pre-admission appointment at the hospital.

First I checked in with admissions, gave them my insurance info, requested a private or semi-private room, if available and declined to rent a TV or phone (note to self: make sure to pack phone and charger and load up tablet with mindless videos).

Next we went to the pre-surgery unit (not it's official name but you get the idea) where we met with a bunch more people (last time, I remember going from room to room instead of having folks come to us but my memory of the last time is extremely untrustworthy). I got weighed, peed in a cup, had blood drawn (they aren't allowed to access my port so had to get a vein my arm to work - ouch!) met with a pharmacy tech, a couple of nurses and an anesthetist.

I'm not allowed to take vitamins on the day of surgery (fair enough), no "herbals" for seven days ahead of time (that includes my precious tea with valerian and melatonin) but I can pretty much go nuts with the Ativan. 

The surgery will be about seven hours long (give or take. Last time they said six hours and it was nine. This was extremely hard for those waiting to hear how things had gone. I was oblivious, as this thankfully not the kind of brain surgery where you need to be awake). The nurse with whom we met says she thinks I'll probably be Dr. S's only patient that day. I guess this is a good thing.

We were at the hospital for almost three hours. When we were done, we went out for lunch and then I came home and (despite many cups of coffee) slept like the dead for almost two hours. It's also a treatment week but this appointment really knocked the stuffing out of me.

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.

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.

so this happened

On April 1st, I had a brain MRI. 

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

And that was it.

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

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

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

I still don't have it.

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

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

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

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

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

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

It was also a shock.

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

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

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

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

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.

here we go again...

A couple of months ago, I wrote about the roller coaster ride I was on in the fall. Once you have been diagnosed with metastatic breast cancer, you are always on a roller coaster. The truth is, that even through long quiet periods, I have lived half-expecting that ride to start up again.

These are the latest developments in my own personal ride:

I have had 3 MRIs since my last post on this subject -  on December 8, January 12 and February 23. The first wasn't detailed enough, which led to the second (which I was told was "stable") and finally to the one I had two weeks ago.

I put off calling about results for two weeks, which is very patient for me. When I connected with the neurosurgeon's secretary (who had been very happy to give me results over the phone in the past), she asked me to come in on Thursday afternoon. I have been completely unable to concentrate on anything except back-to-back episodes of the Good Wife since that phone call.

My appointment was yesterday. The thing about having two days to imagine the worst, is that even bad news can seem OK - at least at first. I'll try and lay it out here at least somewhat coherently:

The spot on my cerebellum (in the site of my original tumour) has grown. 

The MRI report states that it is highly likely to be a recurrence of the metastatic tumour. It also states that there is a new spot on the cerebellum, deeper into the brain.

My neurosurgeon feels somewhat differently. He said emphatically that he doesn't see the new spot at all and doesn't believe there is anything there. He also feels that it's still possible that the patch that's growing could be necrotic tissue, caused by radiation. 

If we weigh the evidence, the spot is showing "more heat" (tumours are "hot", dead tissue is "cold") - something that could indicate a tumour. On the other hand, there is no swelling at all at the site, which is a very good sign. The only way to know for sure is to operate.

Necrotic tissue can be treated with steroids but treatment lasts for months (at a very high dose), during which a tumour would be free to keep growing. The only way to know for sure is to do a biopsy, at which point we might as well remove the mass surgically. 

We're going to do another MRI in 3 weeks. There is still a slight chance that the mass will stabilize or shrink but at this stage (29 months post radiation treatment), this is a remote possibility. It's likely that I will be having brain surgery again in a few weeks. The good news is that as I have "a trap door" into my brain, the surgeon won't have to cut into bone which will hopefully make the surgery and my recovery quicker.

If the smaller spot has grown at all, it will likely be treated with cyber knife radiation, as it's not in a spot that can be reached with surgery (but we're still hoping that there is nothing there).

We are struggling with this news and still processing the ramifications. As many of you know, brain metastasis and what it can mean is my very worst fear. Also, having been through brain surgery once, I am apprehensive about living through it all again. Finally, it is really hard to live in suspense like this for weeks at a time. I have plans for the spring and summer but at the moment, absolutely everything is up in the air.

I really hope this isn't a recurrence of the cancer. I won't know for several weeks, during which time I will work hard to find my equilibrium. Please be patient with me. I'm finding it very hard to find the words to talk about this, so I may be reluctant to do so. I'm also completely unable to imagine managing other people's emotions, which is why I'm writing one long blog post and sharing it with everyone. Tim and the boys have been wonderful but I think we're all a little fragile right now. I'm feeling protective of them as well as of myself.

Yesterday, before leaving the office, my surgeon looked me right in the eyes and said, "We're going to fix this. Whatever it is, we'll fix it." I'm holding those words in my heart.

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?"