never a dull moment: the blood clot edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I could  have been saved several hours.

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

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

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

may you live in interesting times

It's been two weeks since my surgery and for some reason, I thought this would be the easy part. I don't really know why I thought that, except that both my surgeon a and my medical oncologist seemed to the think that putting the Ommaya in could have been like day surgery and I would be feeling like myself again in a week or so.

Not so much.

The nurses were much more cautious and they said to take it easy, be consistent in my activity and increase it very slowly. Ultimately, this is what makes sense. I just wish I weren't so damned impatient.

My surgery was on May 9th. I was in the recovery room for much longer than planned because there was no bed for me in the neurology ward. I ended up being moved in the middle of the night and sent home by noon the next day. And I was just kept in as long as that, so that I could get my three doses of IV antibiotics.

I had a good first couple of days at home (and it was such a relief to be there) but later in the week, after a fast taper on the Decadron (the steroid with which I have a hate-hate-like relationship), I started to notice that my eyes were getting swollen, as though the lids were filling with water. By Saturday afternoon, they were swollen to slits.

They got worse.

No one told me this could happen.

The next day, Sunday, my eyes were starting to improve but my head was hurting. In the beginning, all the pain had been around my incision. By the following weekend, the top and back of my head hurt and it felt just like my brain was swelling. Or a new tumour was cutting off the flow of liquid. It hurt and was very, very scary.

I debated going to Emergency (I hate the ER but the stuff I was reading online pretty much said it could either be a nuisance or kill me) but in the end, decided to take it very easy and call my surgeon the next morning (Monday).

My doctor's secretary made me an appointment and had me come in. My surgeon ended being called away to an emergency and we spent 5 hours at the hospital. It was worth the wait. A CT scan showed that there was no bleed and no obvious new tumour. My doctor put me back on the steroids (a drag but good for the swelling), shared a pretty decent MRI with me and a very hopeful story of a patient with leptomeningeal disease who he knows and has treated, who is still alive and active, two years after her diagnosis.

I told him that I'm collecting hopeful stories.

I went home in a much better mood but woke up in the night with a killer urinary tract infection, my second in a month and almost definitely contracted at the hospital. I have finished my course of antibiotics to treat that and am trying to consume as much probiotic as I can, to avoid a resistance to antibiotics. 

It's totally a case of two steps forward, one step back. On Saturday I felt pretty good and .possibly overdid it. Today, my head hurts again and I am tired from the steroid induced insomnia. I'm also feeling irritable and impatient. I am not supposed to bend down or lift anything. And I hate having to ask for each thing that I need to be done for me.

Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin

At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.

Or not.

p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!

inconclusive

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

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

It didn't work out that way.

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

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

My MRI reports were not ready.

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

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

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

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

See what I mean? More questions. Few answers.

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

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

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

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.

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. 

every three months

Exactly how often should someone living with metastatic breast cancer undergo the tests that monitor our health?

These CT scans, ultrasounds and MRIs are inevitably nerve-wracking, expensive (even if we don't pay for them out of pocket) and sometimes come with a risk of cancer inherent in the test itself. Cancer patients waiting for tests results refer to being in a state of "scanxiety." 

It's impossible to describe what it feels like to wait for test results, unless you've been there.

And those of us with metastatic breast cancer go through it over and over again. It's brutal.

When you live with metastatic cancer, one of your greatest challenges is balancing potentially life-saving interventions with the quality of the life you're keen on saving. It's important to check often enough that you catch any change quickly but not so often that you spend your entire life waiting for tests, undergoing tests and then waiting for results. 

Because that can be paralyzing.

I was speaking to a friend last week who was considering delaying scheduled scans by a few weeks. She said that it  had been implied that she wasn't fighting the way she once had. This made me furious on her behalf, as I can completely understand her need for a period of sanity, when cancer isn't always at top of mind.

In my case, I have the advantage of being in remission and the disadvantage of having an un-protected brain. I know it could just be a matter of time until the next brain tumour. I want to be able to catch it quickly. I also want to stop living my life from scan to scan.

I currently have brain MRIs every three months, at the suggestion of my surgeon. My oncologist would like me to wait until I'm symptomatic but I just can't do that. I have symptoms all the time. Symptoms of brain tumours include headaches, irritability, nausea and clumsiness. Who doesn't feel any of those things from time to time? 

My last scan was April 10. On April 14 my lovely GP called me and opened with the line, "Want to hear the good news?" 

All is well and I can wait another three months until I go through all of this again. 

Or maybe I'll let it stretch to four.

diddly squat (the good kind)

As I mentioned in my last post, I had an MRI last Sunday.

I have subsequently had a really trying week (changing appointment times, having to negotiate and fix many bureaucratic issues with staff who don't know me, treatment and two dentist visits, culminating in a spectacularly messy and traumatic root canal) but I've a phone call from my oncologist that put it all in perspective.

Dr. G: "Guess what your MRI showed?"

Me: "Well, you probably wouldn't have put it like that if it had showed anything bad...So...It didn't show anything?"

Dr. G (sounding jubilant): "Nothing! No active disease, no residual disease just the effects of surgery."

Me: "So my brain is like my liver now. It looks like it's been through the wars but otherwise it's just fine?"

Dr. G: "That's right!"

Me: "And that's it?"

Dr. G: "Yup! Otherwise, it shows diddly squat." ( I believe that's the technical medical term)

I feel far more relieved and happy about this than I did when I had the CT. Not that I take the situation with Herceptin for granted but I do know that it has worked for me for more than 6 years. My brain, on the other hand, remains unprotected. From now on, I'll be experiencing every clean MRI as a gift.

Life is good. 

Bring on the root canals.

all clear

I just got a call from my medical oncologist. My scans are all clear.

I'd no reason to doubt that but I feel enormously relieved all the same.

Dr. G says I'm now being treated like "a patient with two compartments." I'll continue to take a drug that has protected every part of me, except my brain, very well.

And, until there are new developments, the only thing we can do the area inside my skull is to keep monitoring and decide how to treat tumours if and when they occur. 

My next MRI is in two months. Bring on the tube with the banging!

limbo

I haven't even mentioned yet that I had some CT scans last Friday morning. I guess the whole experience was overshadowed by the CyberKnife drama and it's after effects.

The scans themselves (done all at once but there were three) were a breeze. The technician got my vein (for injecting the contrast dye) on the first poke and all went smoothly. I'm an hold hand at these things and being nervous about the unknown of CyberKnife left me no room to worry about the scans. I was out of there in half an hour and promptly forgot about it, in favour of what loomed ahead.

Now though, five days later, I'm worrying. I had my thorax, abdomen and pelvis scanned. I have absolutely no reason - except history - to be worried. But it's nagging at me. 

What if my gut rats (that I've been blaming on CyberKnife) have something to do with this? (although I have no reason to believe that they would)

What if the swollen gland in my groin that I had back in the summer, meant more than having a cold? (although I've been reassured that it's nothing)

What if...? (you can fill in the blank)

I don't see my medical oncologist until February 6th but I can't wait until then for answers. I see my GP tomorrow (for a referral) and she always gets copies. Perhaps she'll be able to tell me something. 

If not, I'm calling the nurse who works with my oncologist on Thursday. She's given me answers before.

It's supposed to take a week for results. Thursday is almost a week later. It would be nice to be let off the hook of suspense.

I'd become quite blase about CT scans for a while. I didn't even care if I had them. The discovery of the brain tumour has certainly shaken my confidence.

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.

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

lost my mojo

Mid-winter blues.

Bored.

No new ideas ("said it all before" syndrome).

Too much loss.

Whatever the reason, I have not felt much like blogging (or doing any writing) lately. 

I couldn't even muster up the energy to blog about the recent Komen debacle (although I took it all in with great interest).

And I can barely bring myself to think about Rachel (a scathingly brilliant and funny anti-pinkwashing activist and kindred spirit) or Susan (an equally brilliant leader, founder of Mothers With Cancer and mother of two young boys) without becoming undone. They deserve the kind of tributes others have written but I can only say who devastated I am that cancer has taken two more wonderful women.

So, I've been taking a break. 

And fallen out of the habit.

I think I might be ready to come back soon. Or to get back to writing down some thoughts.

And spring will come soon too.

Meanwhile, please know that all my latest tests have been gloriously normal. I'm doing OK. I just need to get past this dry spell, so I can return to writing with joy and enthusiasm.

2012: ditching the Guilt

What Catholic girl (former or otherwise) doesn't learn to feel guilty at a very young age? I was always a bit of an overachiever. I'm good at Guilt.


I feel guilty that I have No Evidence of Disease when other wonderful women have died.


I feel guilty that I'm not working.


I feel guilty that I have insurance.


I feel guilty for being alive.


And, with every clean scan, every month that I continue in treatment that does not include chemotherapy, the guilt just gets worse.


It's not very constructive.


I need to figure out how to free myself from the Guilt. It distorts my perception of myself and others like a greasy hand-print on the lenses of my glasses. I have to figure out who I am and what I want, without having to squint or interpret what's on the other side of the smudges.


It won't be easy. And it may take me more than a year. But that's what I'm working on in 2012.

just slightly below par

On Wednesday morning, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I'd had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I'd managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I'd been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn't have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I'm really just below that but it's enough of a concern to send me to a cardiologist and to cancel next week's treatment.

My concern is not that there is permanent heart damage (although it's a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I'm here today. I'm not ready to think about giving it up.

And I don't have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update: I have an appointment with a cardio-oncologist on October 3rd.

Cross-posted to Mothers With Cancer.

brain scanned

Update: My brain is perfectly normal. I'd still like to see the pictures but normal is very, very good.

I had a routine brain scan today, my first in two years. 

It was pretty uneventful (they got the vein for the contrast dye on the first poke) and was over relatively quickly.

I can call for results in a week or so. And I'll probably be told that everything is fine.

I wish things were like in the movies, though and a few minutes after the test, a doctor would look at the images and then we'd discuss them.

I never get to see the pictures. Wouldn't you like to see images of your brain?

This is Patrick Denker's brain. I would like to see mine.

short term planning

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. 

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room. 

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

all clear

I got my CT results yesterday - via a very casual voice mail message:

"This is A. calling from the Cancer Centre. Your scans were normal. Thank you."

So there you have it. That's almost three years clean now.

And now on to making two birthday cakes (D. is 7 today), cleaning the house and doing the myriad things one needs to do before going away for a few days.

I'm not living the life I imagined for myself, but I'll take it.