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.

really random news

1. According to an article in the Globe andMail, women and men respond very differently when they are on the recieving end of an apology:

“Women who are starved of an apology for rude or hurtful behaviour suffer an increase in blood pressure which can raise the risk of a heart attack or stroke, a study found,” The Daily Telegraph reports. “But those who hear a well-timed ‘sorry’ calm down more quickly, with their blood pressure returning to normal 20 per cent faster, the research showed. Conversely, a man’s blood pressure takes 20 per cent longer to recover after an apology – suggesting men become more worked up after hearing an admission of guilt.”

2. My sister sent me an article from the CBC web site this morning, about a colossal cookbook typo with the subject line "Oops." I've made some pretty big errors by not proofreading properly but this tops it all.

3. My friend, O. posted a story to Facebook today, with the headline "Woman with parrot perched on face arrested after throwing inhaler." Note to self: Don't throw an inhaler while a parrot is standing on your face. You will be arrested.

4. I'm still waiting for my CT scan results, which could be why I'm letting myself be distracted by all this silliness.

pictures big and little

I woke up yesterday morning with a sore throat and a headache.

Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.

Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my way (and when you have kids, lots of little bugs pass your way).

I am, literally, sick of it (I've also had benign paroxysmal positional vertigo. That had nothing to do with my immune system and was mostly just an annoyance. And when I realized that I did not have a brain tumour, I was actually kind of amused in a "of course this would happen to me at this point in my life" sort of way. Also, my golden, Emma, had a couple of bouts with geriatric vestibular disease, which I think is basically the same thing).

I need a break from chemo and I'm taking the month of April off. On the day when I would normally be at the cancer centre, I will be travelling home on the train from Toronto with D. (we will have been visiting grandparents, hanging out at the Bat Cave at the Royal Ontario Museum and the Harry Potter Exhibit at the Science Centre).

I'm not losing sight of the bigger picture, though. I have a CT scan today (abdominal and thoracic) and I am worrying about it. 

Because I always do. 

I'm fretting about my veins and how many times (and where) they'll have to poke me before they can inject the contrast but I'm also anxious about what the pictures will show.

Hopefully, everything will look normal and healthy, except for the scars that cover my liver. Hopefully, I can add this to my least of clean scans. And, hopefully, I can keep going through this routine, with the same results for years to come.

I haven't started to take the clean scans for granted. I doubt that I ever will.

perspective in grey

On June 30th it will be three years since my first clean scan, after the cancer had spread to my liver.

For almost three years, I have had no evidence of disease (been NED, in cancer lingo).

And yet I remain in treatment.

I am asked frequently why I continue to receive chemotherapy and Herceptin, if there is no sign of cancer in my body. And the truth is that I often ask myself the same question. Certainly, I don't feel like I have cancer. And I do feel that the cumulative effects - both physical and emotional of ongoing treatment are wearing me down.

I am stuck in cancer's grey area.

My oncologist said to me last summer, "For all we know, you could be cured."

We just don't know enough.

Another oncologist I spoke to, hinted that some would take me out of treatment at this point. A third suggested that some doctors might take me off the chemotherapy and leave me on the Herceptin.

But they all agree that we just don't know enough to make any decision based on certainty. There are just too few women in my situation, younger women who have been diagnosed with metastatic breast and responded so well to treatment, to know what to do with us in the long term.

There are more of us every year, though.

In ten years' time, there will almost certainly be more answers.

And when I get too frustrated, I remind myself that if I had been diagnosed ten years earlier, I would almost certainly be dead.

So, for now, I'll take the grey.

oh oh...

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

hello again

I'm back.

All is well here, I just used up all my writing mojo in November writing a novel (more on that experience in a future post).

Then I took a few days off to hang out with a wonderful friend and, well not write for a few days,

And while I was gone from the blog November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) came and went. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.

It's been four years since I found the lump. It's been three since the cancer spread to my liver. And it's been two and a half years since my first clean scan.

I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, "Shall we keep dragging you in here every few months just to say 'hi'?"

I readily agreed.

I have chemo next week. They've been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, "They're building that for me."

Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.

I'm kind of excited.

And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.

tired

I've been really struggling with insomnia lately. Falling asleep is tricky enough, but remaining asleep is the real challenge.

Most nights, I find myself awake plagued by questions:

Where do I know the actor from who played the handyman in The Waterhorse?

Should we have washed the dogs before we cleaned the carpets?

What if my oncologist ordered a thoracic CT scan so soon after my last abdominal one because they heard something during my last exam (and not just because I hadn't had one in a long time)?

Is the hat I'm making for D. going to be too small?

Was the other movie The Truth About Cats and Dogs? (I looked it up. His name is Ben Chaplin and it he was the actor in both movies).

Was I sent for two CT scans two weeks apart because of poor planning (or poor communicaiton) or is there something ugly growing on my lungs?

If the hat is too small, should I give it to someone else or rip it out and start over?

And so on, until I realize that sleep is hopeless.

Then I get up, play a little online Scrabble (or Lexulous), look up movies on the internet, check out what's happening on Facebook and hope that I will start to feel sleepy again.

But I'm tired today and tired makes me feel melancholy (I have more on that subject but I think I need to save it for another post).

I could drink more caffeine or go take a nap but neither will help me sleep tonight. Don't know if I can help myself, though.

random. out of necessity

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

CT results

"It's good news!" said the voice on the other end of the phone. She sounded ecstatic. When you are nurse working in oncology, relaying good news must come as a welcome change.

"You're kidding!" I exclaim. Then, "I don't know why I always say that."

She laughs. "Well, there is no change. It's stable."

Seriously, she sounded giddy. We giggled some more.

She said, "You have a wonderful week end." She really sounded like she meant it.

Suddenly, I'm in the mood to celebrate. I already have dinner plans. And I probably would have had a beer anyway (they have Beau's. How could I resist?).

Now, I may have two. But I doubt it. I will just enjoy the beer, the food and the company (six people I love), even more.

i do run on

The echocardiogram was fine, the doctor found nothing unusual when she examined me, my butt is sore today from all the biking, the technician got the vein on the first try before the ct scan, I will have results in about a week, I got to go on a great walk with my sister today, my kids and spouse have just left on a two night canoe trip and this evening, I am going out for a grown-up dinner.

Life. Is. Good.

routine anxiety

Today and tomorrow I will make a total of three trips to the General Hospital for tests and an appointment with my oncologist (I toyed with the idea of staying at the hospital all day today but, with 4 and half hours between appointments, I chose to come home. This will mean an extra bike ride up the big hill that is Smythe Rd but I have chosen that as the lesser of two evils).

These appointments will probably never stop making me anxious but I am feeling especially stressed out right now, perhaps because the timing is so compressed.

This morning, I had an echo-cardiogram.

This afternoon, I see the oncologist (My appointment was set a week earlier than it usually is in the cycle and his nurse insisted that I come in for the appointment, as opposed to calling in. This can't have anything to do with my health, as he doesn't have any test results for me. Is he having all his patients in to tell us in person that he is leaving? I have no evidence that this is the case except irrational speculation on my part).

And tomorrow morning, I have a CT scan.

All of these things are just a routine part of my life. But I don't think they will ever feel routine to me.

25 truly random things about me

I am definitely on the mend but still sick (less nausea, light-headed and now sneezing my face off). It seems to me a good day to finally get to this "25 things" meme that I keep getting tagged for on Facebook.

I just came back from getting some fresh air with the dogs and many of these are things I thought about when I was out. I make no promises about whether or not I have written any of this before. And since my mother reads my blog, I may engage in a bit of censorship (Hi Mom! I love you!).

1. When I become interested in something, I tend to read everything I can on that subject.
2. My current interest is Enneagrams.
3. I am a 1.
4. I am married to a 9.
5. These two facts actually help me to understand my life a lot better.
6. My spouse and I have been together almost 18 years.
7. My longest relationship before my current one lasted 4.5 months.
8. I hated being pregnant.
9. I had a miscarriage between my two successful pregnancies. I was 11 weeks along. I was devastated.
10. I have struggled with depression since my early teens.
11. When I was diagnosed with breast cancer in early 2006, I was the healthiest and strongest I had ever been. I believe that helped a lot.
12. Since I found out about the cancer, I have been angry and sad at times but I cannot say that I have been depressed for very long stretches.
13. I am addicted to online word games, namely Scrabble and Word Twist.
14. I am embarrassed that I can't understand some of my 10 year old son's math homework.
15. I love intensely, hold fierce grudges and forgive easily.
16. I have mellowed.
17. I am an atheist.
18. I feel guilty about everything.
19. I still think my spouse is hot.
20. I still my miss Emma, my golden retriever. She died on June 30, 2006. She was almost 14.
21. One year later, I had my first clean CT scan.
22. I don't consider myself to be sick, despite the fact that I have a chronic illness.
23. If I could turn back the clock and make my life go back to the way it was before the cancer, I am not sure that I would do it.
24. That last sentence astounds me.
25. I wish I were a better knitter.

some days are blue, some days are indulgent

I have been feeling kind of blue these last few days.

I'm always relieved after I get good scan results but a feeling of let-down seems to follow almost every time and I find myself, once again, channelling Peggy Lee and asking "Is that all there is?"

I just finished the latest round of edits on my book (coming out this spring with Women's Press!) and I have been left wondering, 'so, what's next?'

I haven't looked at the outline for my novel since I submitted it for my writing course on December 31st. The course is over and I am feeling kind of daunted. I've been asking myself, "Can I do this?" and "What purpose would it serve?"

This morning, I had an appointment with my wonderful oncologist who confirmed my CT results. He also referred to my "normal" life.

I told him that I have been feeling kind of "ground down" by the emotional wear and tear of treatment, as much as the buildup of toxins.

He gently reminded me that I need to think of myself as having a chronic illness, "like diabetes", that needs to be managed but that doesn't stop me from living my life.

I told him that I know how lucky I am and that I am very grateful not to be dead (at which point he rolled his eyes) and that I've been doing other things to keep my life full and interesting (like writing) but that I miss the more fast-paced, structured work environment.

My oncologist was sympathetic but said that we are working at keeping treatment "as innocuous as possible." I only go for treatment every four weeks and I phone in for every other appointment with him. And he's right.

The truth is that I couldn't go back to the kind of long hours that I worked before cancer. Even if I could miss three or four days on treatment weeks, my body couldn't tolerate the stress or long hours. And I am not sure that I really want that back or if I am just missing the sense of identity that I got from my job.

My oncologist suggested that I skip a cycle over the summer and I'll do that. I'll also keep working at doing the things that make me happy.

I have the chance to work at making art (and writing is art). I have to embrace this rare privilege, not feel guilty about it or self-censuring and just see what happens.

Some days are easier than others.

I asked my oncologist whether there were any restrictions on my activities. He said, "No." He added that there were also "No restrictions on lifestyle" - this is the same oncologist who suggested that dope would help me to cope with the side effects of chemo (it did!) and who routinely suggests I go out for a drink to celebrate any kind of news (wine for good news, scotch for bad) - "The liver is healthy. So you can party."

To which my spouse replied, "As if she needs any encouragement."

However, given the fact that I have gained 30 pounds since I was first diagnosed (10 of those in the last two months), I think I'll be living a more ascetic existence for a while.

Cross-posted to Mothers With Cancer.

right to the point

This blog is having an existential crisis. I don't seem to write that much about cancer these days. A more appropriate title might be in order ("Occasionally About Cancer?" "Not Just About Life, Kids, Dogs, Books, Weather Extremes and Cancer"?) but then how would people find me?

I was interrupted by the phone ringing. This is the subsequent telephone conversation, transcribed pretty much verbatim:

A (nurse who works with my oncologist, returning my call about my most recent CT scan results*): "May I speak to Laurie, please?"

Me: "This is Laurie."

A: "Hi, it's A. from the cancer centre."

Me: "Hi A."

A: "Everything's fine. No change."

Me: "Yay! Yay! Yay! Thank you, A!"

A: "You're welcome! Bye!"

The cancer centre's stated policy is that they do not give out results over the phone but my oncologist has been making an exception for me for a while now. If they ever do ask me to come in, I will be very suspicious.

So, I am happy to say that I have nothing new to report on the cancer front.

On another note, go read the comments from my last post. There's some good stuff in there.

*I just tried to link to the post about my most recent scan (it was last Wednesday) and found that I didn't write one. Instead, I wrote about the weather and losing my dog. It appears that, while they still make me anxious, CT scans are less newsworthy than the cold and my pets. Lucky me.

happy new year!

2008 and was a pretty good year for my little family.

I remained in remission for a full year. I now have six clean scans under my belt.

I travelled to Florida with D. and to London with S. I spoke at BlogHer this year in San Francisco and attended a terrific breast cancer conference in Philly (where Jacqueline and John came to hang out with me).

I finished my book. It's now into production!

I started writing fiction and (gasp!) am working on a novel.

Lucy came to live with us.

T. took on a new client and is really enjoying the work and the people with whom he is working.

S. is happier than he has ever been. This year his teacher and the kids from his class entered a Lego Robotics competition. They worked very hard and won an award for their teamwork.

Five year old D. is reading now, with great fluency and expression. He also loves sports and has an active social life.

My sister got married to a wonderful man. They've bought a house that is walking distance from my home.

Barack Obama was elected President of our neighbour to the South.

We have food in our bellies, a roof over our heads, clean water to drink, good schools in our neigbourhood and more material things than we need. We are very lucky people.

I wish you all a very healthy and happy 2009.

nothing new going on here

Just got my CT results from a very up-beat sounding nurse.

No change.

I have not begun to appreciate how relieved I am.

Updated: I have a new post, The Metastatic Cancer Patient's Guide to the CT Scan in 16 Easy Steps up at MyBreastCancerNetwork.Com.

the waiting game

I am waiting for results from yesterday's CT scan. My oncologist said that I should call him for results after five days, so I am going to start calling on Friday (it's only four days post-test but what have I got to lose by calling?).

I did have bloodwork done yesterday and was very relieved to see that all my liver functions are well within the range of normal. I actually startled the nurse who was hooking me up for chemo by giving a little yelp of pleasure.

It is still possible to have tumours on the liver (or nearby) and have normal liver functions. However, abnormally high liver functions can be a sign of a problem.

And I will embrace every indication that all is well.

I have a new post up (I wrote it on Monday) at MyBreastCancerNetwork.Com. It's about how hard it is to play the waiting game:

"I have no real reason to expect anything but good results this time, yet I can’t escape the feeling that something is wrong. My digestion feels a little off and I can’t decide if the pain in my side is a phantom one.

The truth is, I am scared. I am trying to reassure myself with the fact that I have been feeling pretty good, that I have been biking and running But I was diagnosed with breast cancer when I was feeling the healthiest and most fit that I had in years. And I was diagnosed with liver mets three weeks after I returned to work, at a time when I was feeling strong, energetic and (so I thought) on the road to reclaiming my life from cancer.

I have been fairly racked with anxiety these last few days and yet today I feel calmer. Perhaps I have had the time to come to terms with the fact that I have no choice but to meet whatever challenge lies ahead. Perhaps it has helped to keep myself really busy. Or maybe I am in denial."

I also wrote in the same post about how I how I cope with the anxiety. I was a little crazy on the week end but there are definitely things that help, when I can remind myself to do them:

"My advice to women awaiting test results or doctor’s appointments remains the same.

Try not to torture yourself with worst case scenarios.

Go out and play (I went to the National Art Gallery with my family yesterday).

Get together with friends (I had a great time at last night’s book club meeting).

Get some exercise (I am going running with my son after school today).

Write it all down (I procrastinated over doing this but I can’t tell you how much it helped."

Cross-posted to Mothers With Cancer.

circular

Am I freaked out because I can feel a stitch or am I feeling a stitch because I am freaked out anxious about my CT next week and what it might reveal?

Inside my head is not a fun place to be, today.

These are the facts:

• Scarring causes tightness which can make me feel a bit of a stitch.

• I have been exercising hard and felt nothing.

• But as I type this, I feel a dull ache.

• I cannot tell if my liver is swollen because I a have too much belly fat (and lymphedema) and an inadequate sense of my own anatomy.

• If I press really hard, the area where I think my liver is, hurts. But if you press hard enough on any part of the body, it hurts.

CT scan and blood tests on September 16, right before chemo. I will have the blood tests back on the same day but must wait a few days for the CT results.

Until then, deep breaths, lots of positive distractions and more exercise (if the rain ever lets up).

fixing insomnia

I have been suffering from insomnia of late.

I have no trouble falling asleep but I wake up, at least once, and have trouble falling back asleep.

And then, during the day, I am having real trouble focusing. I have a list of writing I need to get done but the last two hours have been frittered away doing who knows what.

I think that I am doing all the right things to encourage a good night's sleep but I think I'm a little stressed. Perhaps I will sleep better once my latest blook deadline is past (next Monday) and I have another CT under my belt.

Sigh.

Perhaps I should have this guy come over to my house and sing me to sleep?