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.

limbo and dreams (updated)

I am still in limbo. My head is healed and I feel more like myself, except for some odd symptoms (my jaw is still freezing shut intermittently for a minute or so. It's so annoying. And embarrassing. It's not really something I can hide and it happens at the most awkward times).

I had my surgery on May 9. Everything said to me leading up to that implied that moving ahead was urgent. And yet here we are. I have a lot of faith in my medical team but this time information is not forthcoming and it's making me crazy. I can't plan a thing and I would just like some kind of information. I know I haven't fallen through the cracks. I would just like someone to explain to me where things are at.

I like information. It makes me feel in control.

So don't ask me when I will be having treatment because I don't know.

On another note, I had some strange dreams last week.

I dreamed that the area in which I lived was being flooded and I had to rush back and get a few things before all was washed away. When I arrived at home, though, the rain stopped, the sun came out and there was a brilliant blue sky. I didn't have to leave after all.

In another dream, a small furry mammal was hit somehow and fell to the ground, dead. In my dream it was a "possum" but it looked more like a groundhog. The body lay in the same spot throughout the dream and I would check on it periodically to see if it was still there. The last time I looked before waking, the animal jumped to its feet and bolted up a tree. After several days of lying still, it wasn't dead at all.

Deconstruct that. No so hard.

Now let's get some news, so I can follow my dreams.

Update: I finally have dates. I don't start for a couple of weeks. I asked why and was told that my oncologist said that it's "not urgent". I asked if this was because of the decent MRI and the nurse said she thought so. After the first date in June, I will go in weekly for a few weeks and then I guess we will re-visit the schedule.

I feel mostly relieved because I can plan my life a little. I just wish I didn't have these annoying symptoms that remind me what's happening.

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!

beating the blood brain barrier

Ouch! My writing muscle hurts! I realized this week that I have not blogged since March 23. I have so much I want to say that I don't know where to start, so it feels a little overwhelming. 

About 10 days ago, I had an Ommaya Reservoir, installed in my brain. Compared to my other brain surgeries it was a walk in the park but I'm still dealing with all kinds of fallout from the anesthetic, pain and healing. I had my staples out yesterday, though, so the end of the tunnel must be in sight (although my head hurts as I type this).

You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.

The good news is that we have decided to try something that is still pretty experimental: injecting Herceptin (also called trastuzumab, to which I have been a super responder. I have been on the drug for 9.5 years and since since going into remission, have no detectable cancer below the neck) directly into my brain, thus getting past the issue of the blood-brain barrier. This is known as Intrathecal (or IT) Herceptin. There is currently a trial happening in Montreal (and a resident who works on it was just in Ottawa, working with my oncologist) and there are stories of people going through the process in the Western US. I will be the first in Ottawa. I'm told that everyone in the hospital is very excited.

By artwork by Patrick J. Lynch, Kuebi = Armin Kübelbeck - own work, the brain is taken from Image:Skull_and_brain_sagittal.svg made by Patrick L. Lynch. Made with InkScape., Public Domain,
https://commons.wikimedia.org/w/index.php?curid=6066950

IT trastuzumab was effective in targeting extramedullary (LM) metastases. This resulted in the prolonged survival of our patient for 46 months, compared to a median life expectancy of 3–4 months for breast cancer patients following the diagnosis of LM without treatment [18]. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (from: "Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine)

The decision to go this route is the first time I have felt hopeful in a while. My oncologist is nervous about side effects and finding the right dose. I had a very intense reaction to Herceptin when I started and because this kind of treament is still experimental there are potentially some very serious side effects (even death). There is also little clarity as to what dose would be both safe and effective.

Anecdotally, and in trials in Montreal (and elsewhere) the response has been very positive, over all. I'm glad my oncologist has been convinced to give it a go. Additionally, my latest MRI has revealed that the three tumours in the brain lining are all stable, so we are feeling less urgency. This is also good news, although I am keen to get started.

The bubble wrap is called a "Bear Hugger" and it's warm and lovely.
The drugs probably helped with that feeling.

the latest

I wrote this in the form of a letter a few days ago. Doing so has been a huge relief to me. I know that it's not the same for everyone but expressing myself in this way has been both calming and freeing.

I have sent it already to family and to friends with whom I have been speaking. It helps a lot because we can start the discussion from here and I don't need to explain from the beginning each time. Or not talk about this stuff at all, in the knowledge that they know. 

It works for me.

You should also know that I learned all this on March 4th (and suspected before because of the symptoms I was having). The news was worse than I had hoped (of course) but I have had some time to absorb and, given that I have also turned the corner on the Cyber Knife am doing pretty well.

Most of the time.

March 20th, 2016

Dear family,

Hello all. I wanted to share an email with all of you, as I am unsure as to what information I have shared with whom and, as always, find it easier to do so in writing. 

I have just had my 5th tumour zapped. The first was in November 2012, the second in May 2015. Numbers 3 and 4 were in December of 2015 and are still there but stable. The most recent was on Tuesday, March 15. As you can tell from this, things have accelerated. I have been told by my radiation oncologist that I should not be surprised to see a new tumour every time I have an MRI (every 2-3 months) for the next while.

The tumours have also moved from the tissue in the brain to its lining and present as more of a "thickening". They're also closer together, which makes them harder to zap. Since tissue can only be radiated once, this means that we are running out of room for Cyber Knife.

There is unfortunately no drug that would address Her 2+ breast cancer in the brain that crosses the blood-brain barrier. There are some amazing breakthroughs on the horizon and we are hopeful that we can keep using CyberKnife for something to become a reality for me. We met with both oncologists on March 4, after what had already been a very hard day, so we still have many questions. I do feel like I am getting really good care and like both my oncologists a lot.

We saw my radiation oncologist again on March 15, right after my CyberKnife and he showed us the images of my brain and really took his time answering questions. My next appointment with my medical oncologist is May 4 but he has said that I am welcome to ask to come in and talk to him before then and I plan to do so.

The next step in the progression of my brain mets is something called "leptomeningeal metastasis" or "carcinomamatous meningitis" (they mean the same thing). This is when the cancer cells progress from brain tissue to the lining and then into the cerebral-spinal fluid. Please don't Google this. I did and found very dire info and didn't realize it was from 2005. Lots has changed since then for the better. It's not a good diagnosis but more hopeful than 15 years ago, for sure! I will include a fact sheet or two at the bottom of this message with more info. I already have some of the symptoms, including sporadic loss of sensation in my face (I call it "facial paralysis" as I feel increased pressure and then my jaw won't open. It can make talking a challenge, sometimes with funny results)

This is a pretty good fact sheet about brain metastasis: http://www.brainmetsbc.org/en/content/frequently-asked-questions-about-brain-metastasis

This one is addresses symptoms. I have the first 7 only: http://www.brainmetsbc.org/en/content/symptoms-and-diagnosis-0

On leptomeningeal metastasis:

http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/carcinomatous-meningitis

We are still hoping that I can look back on all of this in two years and feel relief and happiness that I am still well but we are also being realistic. I need to live in in this hope but also accept that I need to do so in the body I have for the time that it is left to me. This emotional fallout has been very hard to deal with but I have had some time (a couple of weeks anyway) and am moving towards acceptance (with lots of hope, not forgetting the hope).

In happier news, Daniel will be 13 in a few weeks and Sacha will be 18 soon after that! We have told Daniel that he doesn't need to make his decision yet whether to have a party (for his non-Barmitzvah) or a trip. We'll keep you posted. Meanwhile, we are thinking of a family vacation out west in the summer.

We have concert tickets to see Courtney Barnett for late May in Montreal with Sacha. He has been informed that he has to buy his mother a legally purchased beer. 

Having things to look forward to is making us all much happier these days.

Please feel free to ask any questions once you have read this over and absorbed but don't feel like you have to do so. I just wanted us all to be on the same page and to spare myself the difficulty of having to repeat myself.

With much love as always,

Laurie and Tim

good things

Time for another one! What would yours be?

In random order, the things that make me happy these days:

Lynn Miles.

Billy Bragg.

Tea.

Thinking about Canadian travel.

Colours.

Massage and reflexology.

My friends and chosen family (and that includes lots of real family).

My sister (because that bears repeating).

Dark humour.

Dog faces.

Tim (for 25 years this month. Over half my life).

My brain (ironically, I know).

Spring.

Cyber Knife is radiation (and other news)

First of all, thanks to you all for giving me all this space. It has meant a lot to me.

I'm ready for questions now and to talk about it but first I have to have lunch and then go to Cyber Knife radiation.

The name is confusing but it's radiation that can be done differently than whole brain (which is generally only done once). Each new tumour can be targeted directly in one to a few days and you can keep going for quite a while. It's newish technology so no one is certain what that means.

My first brain tumour (in November 2012) was treated with conventional surgery, followed two months later with radiation. We did the same thing in May 2015. The two tumours zapped in December (4 days that time) are still there but stable. 

So this is number 5. Every person is different but I find that it takes me a week to recover (this was hard the first time, when I was told people generally have no side effects). As with Herceptin, I am chosing to believe that this is because it's working.

It's "tricky" as they say because it's not in the tissue of the brain but a thickening of the lining. They also have to avoid the other tumours and tumour scarring. I trust that my radiation oncologist is very good but we have all established that art and science are mixed in these proceedings.

Clear as mud? Not even going to proofread but will post. 

See you on the other side.

at least i know what to expect on the table

I have a new tumour.

I will be doing Cyber Knife some time soon. I don't have a date yet but I'm not worried about that. They are on it.

Both my oncologists (radiation and medical) are not just good and smart but they really care what happens to me.

I have had a few days to take this in but have had some other (non blog related and not my story to tell) things on my mind. I have been feeling bad that I haven't explained here but I am letting that go.

Know that I am doing OK. We are doing OK. I just need a few days to rest, sleep (which I have not been doing for more than a couple of hours a night) and take care of myself.

Please don't take it personally, if you don't hear back from me about this right away. I know I am loved and supported. 

If I don't want to talk about it right now, just follow my lead.

Going to knit tonight and watch the last Downton Abbey tomorrow. 

So no spoilers.

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. 

seriously.

Be. Here. Now. (an update)

I just had a bath to help me relax. 

I plopped a bath cube in the water and immediately started to worry that it was the last one and that I needed to make time to get more.

"Be. Here. Now."

Then my phone alarm went off to remind me to take the supplements that I have been forgetting. I had to get Tim to come and switch it off, so that I didn't have to climb out of the hot water. He took the phone right out of the bathroom when he left.

"Be. Here. Now."

There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the Cyber Knife radiation I had in December got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.

My head hurts on the right at the front of my forehead.

I have an earache, that sometimes extends to my jaw and throat.

The right side of my face tingles from my chin to my forehead, when I stand up.

There is something wrong with my balance.

I have begun to feel a pressure behind my right eye.

I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.

I found out online that sometimes symptoms like this can appear, a few months after Cyber Knife treatment, so this could all just be part of the healing process. I cried when I read that. Maybe someone told me that when I was treated but I don't remember.

The brain MRI was ordered for February. A machine has broken at the hospital and they are behind. It was finally scheduled for March 12. This is after I see both my oncologists to get results. 

The MRI booking office has said that only the doctor can change the protocol. The doctor's offices say they have asked to speed things up. So far nothing has changed but on Friday, they told me that if I call tomorrow (Tuesday), they might have been able to do something. It's a step in the right direction.

"Be. Here. Now."

They're also running behind in the CT scan department. My last one showed a spot on my liver, which may well be nothing. I was originally booked in for that one on March 4 (long after I was supposed to have results) but I got on a cancellation list and got that done.

When I called to confirm my treatment time for last week (so I could go to the CT), I was told that no treatment was scheduled for me. Ever. I made a few calls, fixed that and was treated the next day. I still don't know how I fell through the cracks.

My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.

"Be. Here. Now."

When I was at Statford Festival, in Ontario last summer, I bought a mug, in support of the Actors' Fund of Canada, with those words emblazoned on it. I use it alot. I like to have them in front of me.

It's so easy to feel paralyzed right now. So little is within my control. I've been on steroids for two weeks to diminish the swelling. I am bloated, hungry, jittery, angry, clumsy and fearful. I'm having a stretch of insomnia almost every night. Some nights I don't sleep at all.

Should I be doing the things that help me relax? Distract me? Get done the things that need to be done while I am still sharp and strong enough to do them? Do I just live my life as though there is still a long stretch of it ahead?

How do I chase away the morbid thoughts, without burying them so deep that they chew away on my insides? How do I acknowledge the morbid thoughts without letting them take over my life?

There is a lot of uncertainty right now. There's no news, just a lot more questions. I have to balance pushing for answers and knowing when to relax and be patient.

I have never been good at being here, now. I'm working on it. I really am.

Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17. 

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)