A Bittersweet Mothers Day

Any Mothers Day that I am still here with the Bean is a good one. She is eleven now, and coming into the years when she really, really needs a mother. I am grateful to still be here for her. But my own mom's difficult state makes the day bittersweet.

Last night I was instructed not to get out of bed in the morning but to just call, or ring my bell. Sure enough, Sweetie and the Bean made me breakfast in bed. This year, it was more sophisticated than most. She made me a cheese and tomato omelet. Plus juice and tea. There must be tea. I think our dearest memories of our mothers involve tea. There were presents too. A gift certificate for a pen I ogled recently. A writer needs a good solid pen, not the one I liberated from the hotel last weekend. And a Pandora charm. Not the bracelet I tried on or one of the hundred charms I had marked off in the catalogue, but the one the Bean chose -- because Mommy likes pearls. It is beautiful. (When we returned from Montreal last weekend, she and I spent an hour combing through my jewellery box and trying on dresses. We spent a lot of time on the pearls. My little Bean pumped me full of confidence in my appearance, something cancer has tried to take from me.)

I have some time to write now while they walk the dog. I am mentally preparing for the trip to the hospital. Mom has been moved out of ICU to the Acute Monitoring Area so they can continue to watch her oxygen desaturations. She is in a private room due to an antibiotic-resistant infection. We appreciate the privacy, particularly as my brothers were here yesterday and the room was crowded. 

She still isn't able to communicate with us. We can only guess at her level of consciousness. And yet we had to have another conversation last night about our "goals for care." What happens next time she has an infection and goes septic? Do we treat with antibiotics? Do we treat her low blood pressure, requiring an ICU admission? Do we ventilate her if necessary? None of us ever imagined she would be brain damaged and paralyzed. What would she say she wants? To slip away peacefully or to die trying? Do we use medical interventions because they are available? Must we? Should we? Her last words to us were to request all possible treatment. "I want to live." Does she still? And who am I to decide? 

Have you talked to your parents about their wishes? Have you considered your own? Have you considered all the options? Or put it in practical terms? Have you decided when your quality of life determines its value?

Thanks to cancer, my brother and sister-in-law and my Sweetie and I have had to ask ourselves these questions. We know the day is likely to come when further treatment will not buy us another day to hug our children -- which is all I want in life, I suppose. I haven't answered all the questions yet. For today, I will go to the hospital today, hug my Mom and drink a cup of tea. And be grateful she is still here.

No, I Haven't Been Ignoring Breast Cancer Awareness Month

I haven't, really. In fact, I have been busy. My daughter and I walked the 5km CIBC Run For The Cure a couple of weeks ago. Between the two of us, we raised nearly $2,000 for the Canadian Breast Cancer Foundation, thanks to the generosity of our family, friends, neighbours and teachers. Much of that money will go to research. In fact, have a look at this video about how the Foundation uses the fund that are raised.

I have also been reading posts by my favourite bloggers. I have even written a guest post for "Telling Knots" which was published today. The timing is apt, as yesterday was the two year anniversary of getting my biopsy results, the day we told our daughter I had in curable breast cancer. Please stop over at "Telling Knots" to read my post and the other guest posts she is publishing this month. Like many bloggers this month she is putting the focus on those of us living with mets (that is, advanced breast cancer).

Stage IV Snapshot -- Emergency?

None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)

I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.

We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.

The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath:

• The ones on the left side have more problems.
• Bruising isn't normal.
• And sometimes they erode the skin over top them.

Paying the Price for My Vanity

Vanity isn't the only reason I didn't bring my walker to lunch today, but it was a part of it. I feel like I look so much older and sicker with my walker. Then there's convenience. I would rather use the stairs and escalator than go around to the ramp and elevator. There is another reason. My back. I hurt it the other day (ignoring my limits) and didn't think I should lift the walker in and out of the trunk.

So I went to lunch downtown with my cane and had a great visit with my friends from work. After lunch, I stopped to chat with most of them in their offices. I didn't sit down often enough. That's why I should have had the walker, for the seat as much as the handholds.

Before I even got back to my car, I was wiped out and had to stop and sit down. I called my Sweetie on my way home and asked if he wanted me to pick up any groceries for dinner. Then I begged him to say no. I just couldn't face the grocery store. Accelerating and braking were painful. Sigh. By the time I got home I needed to drag myself inside. Straight for the couch.

I suppose that it made matters worse to have taken the dog for a walk, again with cane not walker, this morning. I'm not very bright, am I?

Honestly, There is a bright side to my foolishness. I won't shut myself in the house and wither. My nature is to regularly forget or ignore my limits. I just like to know where they are.

Someone Took the Monster Out of the Cupboard

I have a monster in the cupboard. We don't need to look at him every day, so we keep him in the cupboard. My husband and I know he's there. We take him out from time to time, but not often; he's so scary. I thought my daughter knew he was there. She didn't. She didn't know we had a monster.

The monster is the fact that breast cancer kills.

My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her.  It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.

Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.

To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.

My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.

I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.

Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?

The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.

You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.

Sometimes I Lie

Little white lies. I feel I have to tell them. Why? Mostly for the sake of the Bean, my little girl.

Frequently in the neighbourhood, at school, or this week at the dentist, people ask me why I am using a cane. I explain that I was diagnosed with breast cancer and it has spread to my liver and bones. God bless them, they usually say something like "but the cancer is all gone now?" Uh, well, no. "But you'll be alright, won't you?" That's when I tell a modified version of the truth. I say that the doctors treat it as a chronic disease, like diabetes. If I mention that there is no cure, I do it in my sweetest, most hopeful voice. Why? BECAUSE MY DAUGHTER IS STANDING RIGHT THERE!

Yes, the doctor really is treating it like a chronic disease... because there is no cure.  Trust me, it's not like diabetes. With all due respect to my dear friends with diabetes, it's not the same. They wouldn't want to trade diagnoses with me.

In front of the Bean, do you think I am going to mention that breast cancer is likely to kill me before she grows up? Come on, nobody wants to hear that. Especially me.

I really wish there was meaningful awareness of breast cancer. I wish people understood how common it is, that there is no cure. Damn Lance Armstrong and the Pink Police for convincing everyone that cancer is easy to fight. It isn't. It is an insidious demon attacking me daily. I fight it with handfuls of pills, IVs and radiation. I fight it with every stubborn breath I take. But it isn't easy. Unless you ask me in front of my girl, in which case I'll say, "I am fine, really. The doctors have it under control."

Flashback to the Biopsy Table

"But my girl's only eight," I cried! The radiologist and technician stopped making their "no need to worry" noises as the image on their ultrasound screen became clear.

I knew, before the needle biopsy. The CT had already shown apparent metastacized tumours in my liver and bones. We could feel the breast tumour. It wasn't pea sized. It was huge. I knew what this meant.

"But my girl's only eight!"

Can you hear the terror in my voice? I can hear the paper on the biopsy table, under me and feel the cotton robe against my cold, frightened skin. I can see the dim light coming in from that north-facing window. And I can feel the terror. Not that I might lose my life, that's not the issue. That my daughter's health and happiness would forever be tainted by my diagnosis, by my prognosis.

I will need a miracle to survive this disease. But every morning that I can face my dear girl with a smile is a miracle for which I thank God.

"Patient at Risk for Pathologic Fracture"

There it is. The last sentence on the CT scan report. The sentence the doctor didn't mention. "A lesion in the right femoral neck places the patient at risk for pathologic fracture at this location."

Google explained to me that the femoral neck is the top of the thigh one, just before the ball (head) that fits into the pelvis at my hip. It is a pretty vulnerable spot, particularly in Ottawa during such a cold, icy winter.

I usually get up with my daughter and walk her to the school bus stop. The last few weeks I have become increasingly nervous about out our walk. The stop is only a few houses away. But there is so much ice on the road, and a bit on our front walk, to be honest. It is time to hand this job over to Geoff for a while. I hate to do that. He has taken on so much of the household tasks since I got sick. I like to let him sleep in a bit in the morning. But the risk is too great.

If I were to slip, the chance of the femoral neck snapping seems to be high. Surgery would be required to fix it, whether it is pinning the bone together or replacing it with a prosthesis (as in hip replacement surgery). I expect it would be more disabling than my previous pelvic fracture. Since reading the CT report, I've been feeling some pain deep in my hip. The Tamoxifen I'm on can cause bone pain. Or maybe it is in my head. Maybe I'm making a mountain out of a molehill.

On Thursday, I see an orthopedist, and then next week, my radiation oncologist. They will be able to tell me more. Maybe the risk isn't as great as I fear. Perhaps Dr. M could use radiation to strengthen my bone. Having been off chemo since November, my bone marrow should be able to withstand the radiation. We'll see what they say.

But in the meantime, I think I best stay off the road.

Power Outages, Cancer-Style

Yesterday, I heard cancer fatigue described as a "power outage."  The term hit me. That is exactly how it feels.  The fatigue hits out of the blue.  You can be quite active, and have plans to do more, when all of a sudden you just NEED to lay down, and then you're out of commission for a few hours.

I had a power outage last week, before chemo. I had had lunch with a good friend and picked up groceries on the way home.  Then I puttered for a bit.  Just when I was about to lay down for a rest, my Sweetheart asked if I could make supper early, so he and the Bean could carve the rest of the jack-o-lanterns. Uh, sure, I said. Big mistake. By the time supper was ready (and all I had to do was reheat a couple of things), I was drooping at my plate. I laid down on the couch as soon as I finished eating. I tried to read some blogs on the laptop, but my eyes kept closing. Next thing I knew, I had slept for two hours! That is a cancer power outage.

Last round, I had a mental power outage. It was the day after chemo and I had to pick the Bean up after school to take her to an appointment. I screwed things up from start to finish. I went over to a neighbour's and got into my mind that I just needed to pick Lena up at the bus stop. Sweetie called me in time to make it to the school as planned. We were to pick up a vegetable for supper on our way home. Well, we poked around the mall longer than we should have, got caught in traffic and ended up at a different grocery store than where I aimed to go. In short, we came home with a vegetable after Sweetie had finished making... and started eating supper. Neither of us was happy with the way things turned out. Bad night.

Power outages like this, mental and physical, make me worry about my ability to work in the future.  The Bean pointed out that the power outages come out of the blue, making it difficult to stick to a work schedule.  What will the future hold?

It's Not Something to Celebrate

For the last week, I've been avoiding something: looking at last year's calendar.  I broke down today and confirmed the anniversary I had been trying to forget.

Last year, on Tuesday, October 18, a doctor told me and Geoff that I have Stage IV Invasive Ductal Breast Cancer.  Later that day, I told my parents, my boss and our little girl.  It wasn't as hard as you would think.  We knew it was coming, most of the crying was done.  The meeting with the doctor just made it real. He had the biopsy results. 

To this day, I still have trouble believing it.  I keep thinking there must have been some kind of mistake or misunderstanding.  I can't have cancer.  I can't be dying.  Then I remind myself that they did the biopsy... on my breast... and it was cancerous.  I have breast cancer.

I suppose the upside of living a year with advanced breast cancer is that you lived for a year.

But it's still not an anniversary I celebrate.

P.S.  I can't close without taking a moment to recognize all the support we have received in the last year from friends, family, neighbours, Transport Canada, Lena's school, Mom and Dad's church, and of course the hospital and community care workers.  Last October 18, I was very sick and very scared, and by the time chemo started at the end of the month, very overwhelmed.  I don't know what Geoff and I would have done without that support.  I just don't know.  Thank you.

Oncology Results: January 18, 2012

First, thank you for all of your good wishes and prayers since my last post.  I am sure they helped.  And I am sorry to keep you waiting with this post, but I have been terribly drowsy for the last several weeks, to the point that I couldn't stay awake reading the morning newspaper or wait for the doctor's appointment.  During that point in time, my Sweetie posted for me.  You can see his summary on the Geoff Takes On blog, here.  Despite today being a chemo day, and me having slept most of the day, I'm feeling more energy this evening.  So, without further ado, here's my take on the oncology results we got on Wednesday:

The previous week, I had had two tests, an echocardiogram and an CT scan of my chest, abdomen and pelvis.  I was worried that in the month or so when I didn't have chemo that my cancer might have spread.

First, the echocardiogram, nothing had changed since the one I had in the Spring for unrelated reasons.  My heart is good.  I have mild regurgitation in my mitral valve, but that doesn't seem enough to call it mitral valve prolapse.

And then there's the CT scan.  Geoff and I were holding our breath.  I don't know if I'd really given you a sense of the liver tumours I had.  This CT scan described them as "innumerable."  That's not great on its own, but the rest of the news is.  There were a couple of large tumours that had been measured last time.  One of them went from 4" by 3.6" down to 3" by 1".  That is a major change!  Another went from 1" down to 0.35".  In the words of the CT report, there is, "marked interval [since last test] improvement in hepatic [liver] metastases  consistent with partial response [to the chemo treatment]. No new metastatic disease is seen inter-abdominal [No mets in other abdominal organs]."

They also said that the fractured pubic bones are healing on both sides of the body.  And I had been told the break was only on one side.  I also learned there are fractured ribs; I can feel them, now that I know they are there.  That explains the shortness of breath.

I have to laugh at they way they write the report.  It's by body part or organ.  For example:

"Lungs:There is no interval development of bilateral subsegmental atelectasis [collapse of the lungs] with no consolidation or suspicious pulmonary nodules." In my own words: blah, blah, blah, no cancer in the lungs, yay!

"Heart: Grossly unremarkable. ..."  Hmm, I suspect some of you would disagree.  On the plus side, what it means is that there is no cancer in my heart, which is very good news.

I won't go into detail about the bone metastases, since the CT scan isn't the best test to measure them.  We know they're there and there are a lot of them.  'nuf said.

This is very good news for us.  Geoff was visibly relieved during the appointment, thank goodness.  Personally, I thank God for the good news.  I know the doctors did an awful lot: choosing the right chemo is important, as is radiating the right spots.  After that, prayer makes the difference in the end.  So thank you all for your prayers and good wishes.

My oncologist says there's good reason to be optimistic this disease can be managed for many, many years.  That's what we're looking for.  Many, many years.

p.s. Strangely, this CT didn't measure the breast lump.  Could it not see it?  We can't feel it.

Guest Post from Geofftakeson: The Early Days of Kate's Cancer

I suppose that there were periods of my illness when I was sufficiently out of it that I couldn't really describe it to you now.  Nor did I understand how sick I was at the time.  So, my Sweetheart, on his Geofftakeson Blog had described that period up to when I first started chemotherapy.  With his permission, here is Geoff's view:

As I have written about before, those early days after Kate's breast cancer diagnosis were the most difficult of our lives, not that I want to speak on Kate's behalf. We didn't really know what we were faced with, but what we did now was that Kate was very sick. Our GP was the lucky fellow who got to break the news to us. We could tell he was devastated. He had had Kate as a patient for nearly 20 years, me for almost ten and the Bean since she was born. Before we left the appointment, he got on the phone with the Ottawa Women's Breast Health Centre, which got us into the system of cancer care. He hugged Kate long and hard with tears welling up.

The people over at the Breast Health Centre ordered more imaging, tests, biopsies to confirm the diagnosis and and referred Kate to Medical Oncology at the Ottawa Cancer Centre and gave us that first taste of hope. This was treatable over the longer term.

That initial hope, though, was dashed over the ensuing days and weeks. Kate became increasingly symptomatic and was very sick indeed. She had a hard time keeping food down and her mobility was getting worse and worse as her cancer-riddled vertebrae began to fracture. If I am being honest, I didn't think she was going to make it to her first appointment with the medical oncologist. We had a pre-scheduled appointment with our GP, and when we went to see him, I fairly near begged him to see if he could get her into see an oncologist before her scheduled appointment which was still two weeks away. Turns out, I didn't need to beg, he worked the phone and ended with assurances that they would see what they could do. By the time we got home, we had a message that she could see an oncologist in two days.

The day of our appointment, Kate was even sicker than usual. She was in a lot of pain and vomiting frequently. When we finally met the Oncologist, Dr. G, he told us that the news wasn't good in that a stage four diagnosis was never good, but he thought there was a good chance, though no guarantees, that the cancer could be brought to heel and treated as a chronic disease. He is an endearing man. with a dark beard and hair and that day was sporting a red plaid flannel shirt and black jeans. He looked for all the world like a lumberjack. Both Kate and I liked him immediately.

First things were first at that initial appointment and Dr. G began trying to get her nausea and pain under control. As the day progressed, Kate remained violently ill and was in and out of sleep as the doctors tried to control the pain. Kate was in a gurney the whole day before she was feeling well enough, though still not great, to be released. Meanwhile, Dr. G had arranged to start Kate on chemo therapy the very next day.

The next day, still vomiting frequently, we showed up for Kate's first chemo session. One of the first drugs they started her on had nothing to do with killing the cancer. Dr. G explained the day before that Kate was hypercalcemic, meaning that she had excess calcium in her bloodstream. This was a result of the cancer metastases attacking her bones, and could be part of the culprit for her nausea. So they were giving her a drug originally designed for patients with osteoporosis called Pamidronate. The goal was to repatriate to her bones all that calcium circulating in her blood. That part of the treatment went well.

Next, they started her on Herceptin, a biological concoction that binds to the Her2 receptors on the cancer cells and keeps them from dividing. That, too, went well. Next, though, they started her on another drug called Paclitaxel. Within seconds of starting her on that, her face and arms started turning an alarming shade of deep pink. They had to abort the treatment. Turns out, reactions to the medium the Paclitaxel is dissolved in is fairly common. This was on a Friday. They rescheduled the remainder of the treatment for the following Monday and started introducing the drug at a slower rate, which did the trick.

The most amazing part of that first Friday treatment, though, was that Kate's nausea disappeared, the Pamidronate doing its job. Also, while she was undergoing that first round of treatment, she met with a RN, Nurse J, who was able to get her pain to a tolerable level. Nurse J has continued working with Kate and the pain is fairly well controlled now. Also amazing is that with just that one round of treatment, the primary lump in Kate's right breast shrunk noticeably.

Finally, the fear subsided quite a bit and we began to hope that, yes, this might go our way after all. Those first few days, though, with Kate so incredibly sick, I had to consider the unimaginable. That's a place I hope to never have to go again.