update: stable

I have now had 17 intrathecal (injected into my brain) treatments of the Herceptin. I'm getting used to it.

I had an brain MRI on September 15.

It showed all visible tumours to be stable. There were no new visible tumours. As I said, in an email to family:

"The brain MRI shows things to be stable. This is so much better than the alternative that we celebrated with gelato and a meal out.

It would have been nice to see some progress but this is still good. What's difficult to know is if I am just staying stable right now on my own or if the treatment is working. What is certain is that we will not be stopping for a little while - even if it is a grind, we have to assume that it's helping. Things are certainly not nearly as bad after 14 treatments as they could be by now."

The oncologist treating me said that it's likely that I am stable because of some treatment but we don't know if that's the Herceptin or the CyberKnife radiation I had in March. I do wish it were more obvious but I am happy to be here and to be feeling OK, all things considered.

I also had a spinal MRI on September 16. The report clearly stated that there was no visible sign of metastasis in my spine. This is good news. I'm still in a lot of pain but I don't need to worry that its caused by a new tumour.

"I have degenerative disc disease (which is a misnomer because it is not a disease and not bound to get worse). I will not hurt it by walking through pain or swimming. I'm going to see a physiotherapist and I have acquired a stability ball. My back pain has been a serious impediment to my quality of life so I want to make it better."

I also have neuropathy in my right foot and a lot of discomfort from headaches and all the weight I have gained. I miss my old body and the things it could do. I haven't given up hope that I will get some of that back but it's frustrating. 

On the other hand, I feel lighter these days. I spent much of the summer feeling like I was about to die and just waiting for the other shoe to drop. Nothing has changed really except that I seem to have decided to enjoy living. It's so much easier to exist this way.

At one of my treatments this summer, Tim said to me "I feel an obligation to have more fun." It's an odd way to put things but I really got it. We have, since that day, put in a concerted effort to have a better time. And I think we've been doing a pretty good job.

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

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.

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.

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.

the best laid plans

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

eating out for CyberKnife

I really want to write a longer post about CyberKnife. In the end, I only had one session (and it felt like more than enough) but it might as well have been three because this "no side-effect" treatment made me really sick. Four days later and I still feel sick to my stomach. 

I was just remembering thinking that after chemotherapy, my breast cancer radiation would be "a walk in the park" but I hated almost every minute of it. And I had almost every possible side effect. 

I hate radiation. It's really worth it, though if it keeps my tumour from coming back. And if others appear, I know this treatment is there for me.

 I'll write about the experience in greater detail later but today I wanted to tell you about an event I'm going to attend. If you live in Ottawa, and are in a position to eat out, you should consider it, too. Never has it been easier to make a contribution:

The small print, that's nearly impossible to read, explains that on January 23rd, participating local restaurants will be donating 25% of their proceeds to the CyberKnife and research programs at the Ottawa Cancer Centre. 

It's a good idea any day of the week but since I just finished CyberKnife treatment, it seems particularly appropriate (assuming my stomach agrees and I feel better). I'll be going to the Atomic Rooster with Tim because I've heard really good things, Tim says the food looked great when he was there last week for a friend's vernissage and because her art show is still running and I can see it too.

Click here for the list of participating restaurants (scroll down) There are more than 100! and to read more about CyberKnife in Ottawa.

Finally, here's a short video where a neurosurgeon (mine!) talks about the importance of the CyberKnife to the Ottawa Hospital.

update: looking up

The pity party is over. I'm feeling much better now.

My energy levels have started to come back and my walks are getting longer and faster.

I had a wonderful week in Florida that contributed greatly to healing. I even swam a bit while I was there. I can do the sidestroke and the crawl but my neck won't yet let me do the breast stroke.

I did a bunch of balance tests today that I passed with flying colours. My balance wasn't really that bad but the tests I found challenging (pretty much the same as a sobriety test) two months ago were really easy to do today. I hope that translates into less falling down.

I still have pain in the back of my head. It's not near the incision, which is long and itchy but healing well. This feels more like a giant bruise on the top and back of my head. I can't bear for anyone to touch me there, sometimes it throbs and when I overdo it, my head feels like it's in a vise. It turns out that this is not unusual and healing will take three to six months. Just knowing that it's no big deal (and not a sign that my brain is swelling) is very reassuring. Apparently surgery damaged my muscles and all the extra blood and air beneath the surface need to go away. Or something like that. I was given a more scientific explanation but that's what I retained.

Tomorrow, Monday and Tuesday, I will undergo three CyberKnife sessions (either 'one dose in three treatments' or 'one treatment in three doses.' I can't remember. I had a terrible appointment with my radiation oncologist to lay out the plan but I'll save that for later. I really don't feel like making my blood boil so close to bed time). I still don't much like my radiation oncologist but I hear he's really good at the zapping part, which is what's important.

I also have a CT scan tomorrow of my abdomen and thorax.

I'll have an MRI in two months and then every three to six months thereafter.

I have a serious crush on my surgeon. I think Tim might too. After Dr. S. left our appointment today, we both gushed, "He's so good!"

I feel like I'm crazy busy, which is why I haven't been writing.  I guess when you do nothing for weeks at a time, you end up paying the price. I need to be careful not to overdo it, though (see above, re the vise).

And how have you all been for the last eight weeks?

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.