books are my friends

I have struggled with insomnia occasionally in my adult years and much more frequently since my first cancer diagnosis. I don't know if it's my age, the years of chemotherapy and side effects, my old bed or things that go bump in the night but I very often wake up between 3:00 and 4:00 and can't get back to sleep, no matter how much I toss and turn.

I've learned not to look at my phone or turn on my computer. There is something about the back-lit screens that jolt me further awake, making it impossible to get back to sleep before dawn. And lying in bed, trying to will myself back to sleep just adds to my frustration.

I've started to keep a book-light on top of whatever novel I'm currently reading by the side of my bed. When I sense that sleep is temporarily hopeless, I read until I feel that it's worth it to take another crack at sleeping. Sometimes this is a couple of chapters. Sometimes it's a couple of hundred pages.

Reading is so soothing. It distracts me from worries of inadequate sleep and doesn't let me indulge the fear and anxiety that thrives in the middle of the night. And when I read at night, I feel none of the guilt that can accompany daytime reading that voice that says I really ought to be doing something more productive.

Last night, I read "Saints of the Shadow Bible" by Ian Rankin. I started it before bed last night. I'm now on page 150. I know it would be better to be sleeping more. I've cut out afternoon caffeine. We're trying to figure out how to afford a new bed, after 17 years.

I could write a book on what to do to cut down on insomnia. For now, though, I'll just appreciate the joy of reading one.

learning to breathe

Last year, when I was diagnosed with a brain tumour and went through surgery, I was fine.

I mean, the surgery was brutal and recovery was excruciating but emotionally, I was mostly OK.

A year later, except for the back of my head (which is a little bit sensitive), I'm fine physically but the emotional part has become more of a challenge. In the last few months, it's become clear to me that I'm only going to work through it all with a little outside help.

So, I'm seeing a therapist. I know it's the right thing to do and I like and instinctively trust the woman I'm working with but it's not easy at all. 

We've talked about how all my life, I've been pretty good at getting along by stuffing a lot of my fear and anger into an emotional closet. This has, for the most part, been a remarkable coping mechanism. However, no door is completely effective at shutting out the bad stuff and, when it leaks out through the cracks, it manifests itself in ways that can take a very large toll on the body and spirit. At this point in my life, my emotional closet is so full of anger and fear that the door is in danger of bursting wide open. 

I'm afraid of losing control.

I'm embarrassed and ashamed that some of it is so ugly.

I'm scared of taking my darkest thoughts and holding them up to the light.

But I think it needs to happen.

I've also been thinking a lot about how I live most of my life in my head, to the point that I'm really quite disconnected from my own body. At my very first session with my new therapist, she pointed out that when I talk about my fear of another tumour or about certain things from my past, I hyperventilate. And I don't even notice.

She spent most of the second session interrupting me and telling me to take deep breaths, hold them and then exhale slowly. She asked me how I was feeling and I said "Impatient."

What I thought was "I'm paying all this money per hour, so I can sit here and breathe? I can do that at home."

Except that I don't. So she's given me homework. I have to spend two minutes a day, twice a day concentrating on my breathing (we started with four minutes but it felt like an eternity).

In.

Out.

Just taking in oxygen. It's so basic. Yet here I am, 46 years old and learning to breathe.

remembering

photo: Benoit Aubry, Ottawa (Wikimedia Commons)

Across Canada today, people are attending events, watching ceremonies and wearing poppies in remembrance of those who lost their lives and lived through war around the world.

It's a time of gratitude for willing sacrifice and for melancholy remembrance of all that has been lost.

This year, there was a fair bit of controversy over those who would replace the traditional red poppies with white, to symbolize a commitment to peace. In my view, there has been far too much hyperbole on both sides of the issue. Those who advocate change, accuse those who wear red as glorifying war. Those who love the traditional red poppy have called the white "disrespectful rubbish" and those who advocate for them "morons."

Personally, I think it matters little what colour poppy you wear.

So many young men and women have given their lives in Canada's military. So many more have come home grievously injured in ways that are visible and some that are not. We should remember their sacrifice and work to make sure that medical and psychological services are in place for those who return. Providing a decent pension and access to education and employment is a genuine way to thank a soldier for his or her service.

Some who fought in Canada's "Great Wars" were children who lied (while the military recruiters turned a blind eye) so they could fight for their country and so that they could be employed. All over the world, there are child soldiers being recruited through enticements and threats. On Remembrance Day, I think of all the young people who's future is eradicated or greatly compromised because of the scourge of war.

Thousands of men and women have suffered at the hands of there own brothers and sisters in the military. Since the WW1 and before, soldiers have died because of bad decisions at the top or at the political whim of government. Many have been sexually assaulted, only to face silence and retribution if they have spoken out. The military has been slow to address violence and mental illness within its own ranks. We must take a moment to remember those who have suffered and to celebrate those brave soldiers who've had the courage to speak out and to advocate for change.

You don't have to believe that every battle or even every war was just in order to be grateful. It takes nothing away from veterans to say that we need to do more for those who have come home. It's not disrespectful to remember war while calling for peace. And I know there are many veterans who would agree with me.

"let's hear it for November!"

I get really (and somewhat irrationally) nervous at this time of year. 

I found the lump in my breast on December 2, 2005.

I was diagnosed with liver metastasis on November 24, 2006.

And last November, was all about trying to decide what to do with my brain tumour. I had surgery on November 27.

This is not my favourite time of year.

But Katherine O'Brien left a comment in yesterday's post and linked to this new video that she made. One very good reason to embrace November is that it's no longer Pinktober!

Hallowe'en re-cap

A few days before Hallowe'en, parents received an email stating that, while dressing up on October 31st was encouraged, costumes could not include "weapons or blood." This was Daniel's quick solution.

Apparently, everyone at the school was fine.

Every Hallowe'en at our house begins with carving.

Our pumpkin wore a knight's helmet, to complement the evening's costume.

Don't let the serious face fool you. He was thrilled.

And I got to bemoan the fact that I had my child's "blood on my hands."

Even Lucy got in on the fun, albeit reluctantly.

And the biggest news of all? 

i positively like this

Among the many sentiments that can make me apopletic, the idea that if only women with breast cancer "stay positive", they will be just fine might just get to me the most.

I was pretty damn positive during my initial treatment for breast cancer and yet here I am. I remained postive through my five years of remission (and ongoing treatment) and I was relatively upbeat during my brain surgery, almost a year ago.

I think it's a good idea, generally, not to wallow in my sorrows because it's so much harder to live that way - but I don't think the positive live and the negative die. Not for a moment.

It's natural that we want to believe that survival after breast cancer is within our control and some things certainly are. But not everything. And I think that's why those of us living with breast cancer can make "survivors" feel kind of uncomfortable. We're they're worst nightmare.

There is a real temptation for news outlets and others wanting to highlight the positive during breast cancer awareness month (and at other times) by ignoring women with metastatic breast cancer completely.

katherine O'Brien  (of I Hate Breast Cancer) wrote to a local television station after just such an episode. Please take 5 minutes to watch. Your jaw will drop, I promise.

Click here to watch Breast Cancer Awareness. Stay Positive 2.0

I'm positive that I take great comfort and inspiration from women like katherine and others living with metastatic breast cancer who are not afraid to speak out.

3 weeks later

If you'll recall, I was hesitant to have my port put on my right side because of my truncal lymphedema. I figured that if I'm not supposed to cut my right arm, or even have blood pressure taken on the side, then I probably shouldn't have surgery either. After all, I have very little lymphedema in my right arm and lots in my back and chest.

Well, I have even more now. And it's really uncomfortable. And the site of the surgery also became infected.

I was put on antibiotics for a week. At the end of the week, I saw only a tiny bit of improvement in the wound and the antibiotics had made me sick. And they made me weak enough that, as I was recovering from the antibiotics, I contracted a brutal gastrointestinal virus.

It's been five weeks since surgery and I still don't feel like myself.

And tomorrow, I have treatment.

But at least I'm writing again and riding my bike and going for walks. And the wound, is finally healing.

I think I need to put all of this in a letter to the hospital. An open letter.

Until then, I'm back. And happy to be here.

as it should be.

I had a doctor's appointment today. 

The right side incision (the one where they put in the new port) hasn't healed properly and the area around it is angry and red. There's a spot on my neck where they entered the vein that is also a bit infected. 

Despite my fears that I was being a worry-wart, I was taken seriously. The doctor took a swab of the wounds and gave me a prescription for an antibiotic. She felt around the area of the port to make sure that it wasn't tender. She thinks it's just a surface infection but if the port area gets sore or the infection seems to worsen, I'm to go to the hospital.

The doctor I saw was replacing my GP but works in her practice. She and the nurse I saw today seemed happy to see me and were genuinely empathetic and compassionate. None of my concerns (I also brought an ingrown toenail to their attention) were dismissed or belittled. They were patient and thorough. And the starting point of our conversation was that I know more about my own body and some of my medical experiences than they do.

When I left, I was practically crying with gratitude.

And then I got angry. Shouldn't this be the treatment that every patient should expect at every medical visit?

welcome to October

My Facebook and Twitter feed is filled with exclamations. No one can believe it's here. Neither can I.

Welcome to October.

Is it just be or is the annual deluge of pink crap just slightly toned down this year? Maybe I've just had my head under a rock. I was literally offline for a week and it's been longer than that since I've been in a store. I don't listen to commercial radio or watch television that isn't Netflix, so I've been pretty sheltered, so far. I'm thankful.

I'm still astounded at some of the awful pink stuff out there and I'll be featuring some of the best throughout the month, along with genuinely topical and even helpful information about breast cancer and the organizations and people who are out there doing good work.

In short, you can come here this month, if you're in need of some pink de-toxing. This is a pinxploitation free zone.

For today, here is a letter I wrote a couple of years ago, to Q on CBC Radio, that was the Letter of the Day.

my good bad dog: a love story

She makes an excellent, if somewhat smelly pillow.

It's a good thing she's cute.

This is her Hallowe'en costume. It suits her.

She jumps up on visitors and gets into the garbage at least once a week. She ignores most commands, unless she feels like listening and she steals food off the table (one time a fresh baked lemon meringue pie), the moment you turn your back. She'd run into traffic, if she thought there were something interesting on the other side of the street. She hates to get her feet wet but will roll in the mud. She disappears the instant I have a brush in my hand.

But she comes when called (most of the time) and materializes from out of nowhere when I put on my shoes for a walk. She loves me exuberantly and unconditionally. To her, I will always be The Best and Most Important, even when I have lost confidence in myself. She is happy almost every moment of every day and she gets me out the door when I'm feeling unmotivated.

She has the sweetest temperament of any living being and I have watched a child pull her out of a hiding place by her tail, without a whimper or a growl. She'll sit in a lap like a toddler and will fall asleep in my arms, with her head on my shoulder. I call her my Hairy Little Girl and whole host of names too embarrassing to repeat in this space.

She's a balm on my bruised spirit and an undemanding, forgiving companion. She makes me smile and even laugh on the days my heart hurts the most. She reminds me to be happy, to let go of the little things and how much fun it is just to be alive.

She's formally called Amaia Fiesta Lucy Diamond. She's a very good bad dog.

housekeeping

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

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.

don't assume i'm wrong about this

My recent medical experiences have made me a bit cranky. 

Today, I called to find out how long it will take to replace my port, since someone has to come pick me up. At the beginning of the call, I clearly explained that I was having my port replaced and that I needed to know how long it would take.

Medical professional: "Are you getting a port or having one taken out?"

Me: "Both."

Medical professional (Sounding incredulous):  "Both?"

Me: "Yes, I already have a port and it has stopped working. I'm having it removed and a new one put in."

Medical professional: "Have you talked to someone about this?"

(This is where Tim, when I was relating this, said, "No, it was just an idea you had. You thought it would be fun.")

Me: "I have talked to C. Many times."

(pause)

Me: "The procedure is already set already set up. I just need to know how long it will take."

Medical professional: "Well, putting in a port takes three hours. Taking one out usually takes half an hour."

Me: "OK. Thanks. I'll say that they should pick me up 3.5 hours after surgery."

Why did that have to be so hard? Why couldn't she just answer me? 

I'm starting to become very annoyed with questions that are pretty much irrelevant to the medical professional involved. Just like the nurse who insisted that I couldn't possibly be on Herceptin, the questioner did not need to know any details. The appointment is booked. I'm having the procedure. Just tell me how long I can expect to be there.

I know this sounds a bit pettty. And I do want to say that 90% of the medical staff I've dealt with over the years have been excellent. I've just lost patience with the ones who don't even seem to try.

I wrote a list of "Do's and Don'ts for Medical Professionals" a few years ago. I know that it's been included in at least one package for medical students. Here's another I would like to add:

Don't assume that the patient is wrong.

Of course, common sense is required here. It's best to double check before running a test or administering drugs. But even that can be done in a way that acknowledges that the patient knows something about her own body, medical condition and experiences. 

When I first met my surgeon last year, he asked me why I had asked for the MRI that found the tumour. I explained that 30% of women with Her2+ metastatic breast cancer go on to develop brain tumours. 

The doctor turned to his student and said, "See? That's why I say we can learn from our patients."

Now, that's what I'm talking about.

constant correction

"Balance is a process of constant correction."
-Guy Forsythe, "Balance" from the Freedom to Fail

Terry Arnold (@talkIBC) reminded me of the Guy Forsythe song last night during a weekly Twitter discussion of the Breast Cancer Social Media group (#bcsm) on Twitter. These chats happen every Monday evening but the conversation is ongoing. I often forget about the chats but when I remember (or, more often, am accidentally reminded), I love every moment. When I start to chastise myself for spending too much time online, I am reminded of  how much support I find there - across distance and difference. We "get" each other.

One of the threads last night was about seeking balance, a subject near and dear to the hearts of many of us but especially to those who are recovering from or living with chronic illness. When is it right to push ourselves and when is it best to slow down?

Feisty Blue Gecko shared a post about "Seeking Balance" that deeply resonated with me, as I try work my way through my September to-do list, without forgetting to notice all the good (and not so good) happening around me.

It was a great discussion as always but it wasn't until this afternoon that I took the time to follow the link Terry posted and listen to Guy and some of his band, singing "Balance."

I was reminded that I literally stumbled into the audience listening to Guy at last year's Ottawa Folk Festival, on my way to another stage. I was immediately mesmerized and didn't leave until the concert was over.

It was pouring rain when Guy began what has become one of my favourite songs. As he sang the words from the chorus, "You can't change the world and you can't change the weather, the best you can do is make the most of today", the sun came out. It was a perfect moment as I stood there, acutely aware of my beautiful life.

Tomorrow, my mother is coming for a visit. I need to get to the cancer centre lab to get bloodwork done this week. Thursday is parent-teacher night at both my kids's schools. On Friday, I go to Halifax for a few days (starting with the Advocacy Training, hosted and organized by the Canadian Breast Cancer Network). I get back Monday night and have a surgical procedure to replace my portacath the next morning and Herceptin treatment that afternoon. The day after that, I need to organize the milk orders that have come in at my son's elementary school. That Friday, the home care nurse will come and remove the needle from my new portacath (they leave it in for a few days) and I'll head to Toronto. We'll spend a day getting ready then, I'll head to my friend's cottage in Northern Ontario.

That's just my September.

And that list doesn't even include the banal things from my to-do list that need to get done in between each of these things. Or doing the things that keep me whole, healthy and sane.

Some things just aren't going to get done. Others won't be done as thoroughly as I'd like. I'll try not to think of it as dropping the balls, just allowing them to fall, gently. Someone else can pick them back up or I'll deal with them later.

So much of what's happening in the next little while will be memorable and enjoyable. I need to remember to breathe deeply, look around me and take it all in. I have a feeling there are a few more perfect moments coming. It would be a shame if I missed them because I was too distracted or too worn out to really be there when they happen.




 You can order the Freedom to Fail from Guy Forsythe. I bought it last year at the Folk Festival. It's one of my favourites. I think I'm going to go listen to it now.

and then all this happened

As our story left off a couple of days ago, I was grumpily bracing myself to go through one more test and then dig in my heels when it came time to make a decision that was right for me.

Aren't there dozens of aphorisms about paths being full of twists and turns? That's certainly how it went for me, yesterday.

The day before my appointment, the port-team coordinator called and asked if I would mind moving my appointment up from 12:30 to 12:00. Despite the fact that I was going to have to skip an exercise class, I agreed easily - in part because I didn't mind an excuse to miss the class, partly to be accommodating and partly because I had lunch plans and I wanted to get them as early as I could.

The next day, I arrived for my noon appointment. There was a single receptionist on duty in the busy X-ray unit in which the port team is housed (Module X at the General for any Ottawa folks). I got in line, checked in and was directed to take a seat while I waited to be called.

After 40 minutes, I decided it was time to check in again with the receptionist (at my previous appointment, I had patiently waited for an hour. The receptionist suspected I'd been forgotten and someone did come to get me suspiciously quickly after I checked back in). She called the port team. No one answered the phone. The receptionist took my info and said she'd keep trying.

At 1:30pm, fuming over the fact that I'd actually been asked to come in early, I queued again to see the receptionist. Looking surprised to see me, she picked up the phone and then put it back down, "I'm just going to check what's going on. You've been waiting a long time." She apologized to the line-up of people behind me and disappeared down the hall.

A few minutes later, she re-appeared, shaking her head. "There's no one there."

I must have looked as angry as I felt when I said, "I'm going home. Thanks very much for your help but I need to leave now and I'll deal with this later." The receptionist nodded, sympathetically.

Fortunately, my friend Doreen had arrived while I waited and done a very good job of distracting me. She waited for me while I grabbed my stuff, muttering angrily, "This is so going on my blog!"

Doreen took me out for all you can eat sushi (by the time we were done waiting, I had been hungry enough to chew off my own leg). When we were finished, I felt sated and infinitely calmer. The adrenaline from anger and stress had also seeped away. I nearly fell asleep in the car on the ride home.

I called and left a message for the C., port coordinator and collapsed on my bed. I woke up an hour later and a few minutes after that, the phone rang. It was C. calling me back. She was profusely apologetic.

I demanded to know what happened. Apparently, someone had communicated to the port-team that my appointment had been moved to another hospital and, without checking with their boss (or looking in the waiting room), they left. 

C. told me that she was furious. I said, "I'm glad you're furious because so am I. In more than 7 years of treatment I have never experienced anything like this."

She said that she understood and that "this is not normal and it's been addressed." 

I believe her. She was spitting mad. C. has always returned my calls promptly and seemed both competent and professional, so after a few more minutes of this, I decided to move on. "So what now? How can we fix this?"

We had a long conversation about what could be determined by further testing and the likelihood of being able to fix my port without surgery. We agreed that, at this point, it makes the most sense to just remove and replace. The Drano-fluid flush will only fix it if it's clogged. And the odds of that working, are only 50-50. 

I really don't know if I have all the right information but, frankly, I'm fed up and want this to be over. I'm ready to go under the knife, for the sake of a working portacath.

I took a deep breath and said, "I don't want to move the port to my right side."

C. explained to me again that the route from a right side port to the internal jugular vein is shorter, so there are fewer problems. 

I said, "I understand that but I've had a left-hand port for more than 7 years without incident. I already have a big scar on my left side and I'd really like to avoid having another on my right."

And then...she gave in.

"Well, then we can just put your port in on the left side. It's worked for you in the past and you want to avoid a new scar. That's no problem."

It was easy. I told Tim, it felt like they were ready to agree to anything after what had happened. "I should have asked for them to throw in 500 dollars for my trouble."

Now I can start fretting about the details. I have to go to the cancer centre lab and have bloodwork done. next week. Surgery will be on September 17th (on the same day as my next treatment), at 8 in the morning. I need to make sure I have someone to drive me (I'll be sedated during the procedure. Last time, I needed a wheelchair to get to the car but it all wore off fairly quickly, once I was home). Daniel will need a place to go before school, since Sacha has a doctor's appointment and Tim will have to go with him.

It's all a little stressful and the whole idea of implanting a port freaks me out a little, even though I've been through it before. I"ll be very glad when it's done.

And for the record, not once yesterday, did I say the words, "It's OK." I was too mad to be a good girl.

Update:  Our favourite pizza place forgot a topping on one of our pizzas. I called to complain. They offered to send another pizza. I said, "No. We'll eat what we have. Just give us a credit towards our next order." I'm on a roll.

done with the "good girl"

Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.

Sometimes that's a challenge.

I am, however, fundamentally, and through lots of conditioning, a good girl.

I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.

Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.

After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.

I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?" 

The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.

All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?

If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.

But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.

I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again. 

After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.

new beginnings

September always feels like the beginning and I'm ready for a fresh start.

Taking the summer off has left me ready to write again. I have much to say and many stories to share.

In many ways, this blog is my anchor, holding me in place long enough to name my emotions, share my experiences and examine my actions. I'm feeling kind of "all over the place" these days. I think an anchor may be just what I need.

It's good to be back.

Daniel is ready for the first day of school.

twilight zone

Nurse (shouting from the other room): "How old is your port?"

Me: 7 years

Nurse (still hollering): Holey Moley. That's old. (pause) Are you sure?

Me: March 2006.

Nurse: When was it last accessed?

Me: 4 weeks ago, tomorrow.

Nurse: What are you getting?

Me: Herceptin.

Nurse: For 7 years? 

Me: Yes.

Nurse: No. Herceptin is for one year. 7 years is not possible.

Me: It is when you're metastatic.

Nurse: Are you on (name of drug I don't remember)?

Me: No. Herceptin.

Other nurse: It's Herceptin. I checked her chart.

Unbelievable.

a guest at Nancy's Point

It's somewhat fitting that while I'm on vacation, I'm a guest on someone else's blog!

"You have no control over the cards you’re dealt; but there is strategy, experience and skill that goes into playing the game.

I’m a lousy card player."

Please visit Nancy's Point, to read more and to check out this excellent blog. Nancy is incredibly generous in her support of other writers as well as being a thoughtful, interesting blogger and author of "Getting Past the Fear: a guide to help you mentally prepare for chemotherapy."

I'm also giving away a copy of my book!

all is well

Just taking some down-time for the summer.

I'm trying to live a bit more in the moment - and stopping to do things like take a photo of this lovely statue I spotted in Little Italy, on my way home from the vet.

Check out the little sheep grazing on the ball of yarn:

Regular blogging will return in September.

a man, a boat and some respite

I was listening to the radio this morning and I heard an interview with a man who was sitting in a boat outside his flooded home in Calgary, fishing. He said that his furnace, freezer, everything in his basement and much of his first floor were submerged in water but he was making the best of it.

"People pay thousands of dollars to do what I'm doing. How often do the fish come to you?" he asked the interviewer. "I can sit and be miserable or hang out like this and keep a smile on my face for a couple of days."

I was quite taken aback with this interview. At first, it seemed like an incomprehensible attitude to have in the face of such tragedy. But as I thought about it, I realized that not only do I understand, I can relate.

I don't actually believe that the guy has been sitting in his boat and smiling for the last few days, or that he's immune in the face of loss. He's just found something, in spite of all that's happening, that makes him happy. No matter what is going on in any of our lives, there is hopefully at least one good thing that we can cling to like a life-raft, something that brings respite while we gather our strength to face all that lies ahead.

I would never choose to have been diagnosed with cancer. I would never wish what I've been through on anyone. But there have been so very many good things - the friends and loved ones who've rallied around, things I've learned about myself and a new appreciation for all the good things - that have sustained me through the darkest times.

I hope it goes without saying that I don't think everything happens for a reason. The floods in Alberta have been horrific and terrifying. This is a tragedy of enormous magnitude.

It's just that this morning I listened to that guy, fishing in his boat while his home was underwater and I felt that I understood him.

what did i do wrong?

OK internet, help me out here:

I've been looking for a recipe for healthy snack bars, to replace store bought "chewy" bars. The bars can't contain nuts or peanuts.

My nutritionist sent me a recipe for Chocolate Date Protein bars. I made the bars, following the recipe exactly and ended up with a very, very tasty paste - too sticky to be rolled into balls, let alone made into bars.

She's away indefinitely and I can't find a comparable recipe online. Can someone figure out how to give these bars more integrity?

I used ground hemp. Could that be the problem? Is it possible to buy whole seeds? Would that help?

I don't want to post someone's recipe online but you soak the dates and then blend them with the cocoa and sweetener and then add the hemp seeds for a few seconds at the end. There's no cooking - you just chill it in the fridge.

Thoughts?

I'm also in the market for healthy and nut-free snack bar recipes. Any thoughts there would be appreciated as well.

learn how to be a better advocate

The Canadian Breast Cancer Network has announced that it will be holding an "Advocacy Training Session" in Halifax, Nova Scotia on September 13-14:

"The advocacy training will focus on the issue of metastatic breast cancer and will offer participants the opportunity to enhance their communication skills and effectively deliver strong advocacy messages to a wide variety of audiences."

Priority will be given to women living with metastatic breast cancer, primary caregivers of those living with  mets and to applicants from the Atlantic Provinces. CBCN will be covering all expenses including, travel, accommodations and group meals for those who are accepted to participate.

I'm applying. I think it's critical that women living with metastatic breast cancer join forces to bring attention to our issues (including the paltry lack of funding for metastatic breast cancer research) and to support each other.

Hopefully, come September, some of us will learn how to feel a little less lonely and a little more empowered. And we'll have learned how to share all that with others.

To obtain an application, or for more information contact  Rebecca Wilson at rwilson@cbcn.ca or 1-800-685-8820 x225.

Please share this post with anyone who you think might be interested.