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.