I'm Still Here...After Five Years

Five years. Five years since that doctor I had never met before confirmed what my family doctor suspected: I had stage IV invasive ductal breast cancer with extensive metastases to my liver and bones. Life would never be the same. Life would, very likely, not be as long as I expected. 

I spent an hour or so searching for the latest and best statistics about metastatic breast cancer (also known as Stage IV). Here is what I found:

• "In Canada, about 10% of new breast cancers are metastatic when they are diagnosed, and 30% of women who are first diagnosed with early stage breast cancer will go on to develop metastatic breast cancer." (Canadian Breast Cancer Foundation)
• "Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months.  No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)

The Canadian Cancer Society hasn't yet released their 2016 statistics, but here is what they estimated for Canadian cases of breast cancer in 2015. (Read more: http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG):

• 25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.
• 5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.
• On average, 68 Canadian women will be diagnosed with breast cancer every day.
• On average, 14 Canadian women will die from breast cancer every day. (Or as MBC Time put it in an October 2016 campaign, "Every 2 hours in Canada, 1 woman dies of metastatic breast cancer.")
• 220 men will be diagnosed with breast cancer and 60 will die from it.

As for Canadian survival rates: the 5-year relative survival (based on estimates for 2006–2008) is 88% for women and only 80% for men. These survival rates are for people diagnosed at all stages of breast cancer, I assume including Stage 0, which isn't yet invasive (hence not technically cancer). Of course the survival rate for those, like me, with Stage IV breast cancer is much lower. Unfortunately, I couldn't find a Canadian statistic to share. The American Cancer Society reports that "metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." 

Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read the article "The Median is Not the Message" by scientist Stephen Jay Gould. In addition to what he says, I would point out that statistics are always based on the past. They reflect the diagnosis and deaths of patients treated in past years. They reflect older therapies. If I have been fortunate, it is that my breast cancer is identified as triple positive breast cancer. It is ductal breast cancer that is positive for the three receptors for which non-chemotherapy treatment is available: estrogen receptors, progesterone receptors and HER-2 receptors. Over the last several years, even since my diagnosis, important new drugs have been developed that target these receptors, interfering with my cancer's ability to reproduce itself and grow. One of these drugs is Herceptin. It costs some $45,000 to $50,000 per year. When it is combined with a newer drug, Perjeta which I don't yet receive, the cost mounts to $100,000 per year. So far, OHIP covers the cost of my Herceptin. For reasons related to how Perjeta was studied, I am not eligible for OHIP to cover the cost of adding Perjeta to my treatment, asI was already on Herceptin when Perjeta was approved. If my oncologist deems Perjeta necessary to my care, I will have to rely on my private health insurance to cover the cost above a yearly $3,000 deductible. But yes, I am fortunate that my doctors can rely on a wide variety of chemotherapy drugs as well as a number of anti-estrogen drugs, plus a handful of anti-Her-2 drugs to treat my cancer. Thanks to the prevalence of breast cancer, a great deal of public and private funds go towards research, resulting in the availability and government funding of numerous drugs to fight breast cancer. My sister-in-law, on the other hand, has a rare cancer for which only a few chemotherapy drugs are recommended, even though there is no research that supports their use for that cancer. So, I suppose I am fortunate.

Since my last post here, I have been on the same treatment: Vinorelbine (my vino or vanilla bean) chemotherapy, Herceptin and Pamidronate. Cancer treatment typically works on a three-week cycle. On Day 1 and 8 of the 21-day cycle, I get a ten-minute infusion of vino. On Day 1, I also get a half-hour infusion of Herceptin. Every nine weeks, I also get an hour of IV Pamidronate, which is a bone-building drug. I have been on this treatment nineteen months. And I will be on it as long as it works AND I can tolerate it. So, how am I tolerating it? Well, not bad. Initially, I had some stomach pains and constipation. They didn't last long. After a couple of months, I developed neuropathy. I have tingling and numbness in my pinky and half my ring finger. It settled down after a few months, but resumed intensity last month. I think that may be because I reduced my Lyrica (nerve pain) dose by two-thirds over the summer. I have also developed diarrhea that seems to be worse after vino infusions and disappear on my no-chemo week. The last two CT scans identified thickening of my bowel wall which may be pan-colitis. Fatigue is also an issue. It comes and goes, but I still have the occasional week where I seem to sleep for hours and hours during the day. Sometimes, I'm not able to rouse myself to make supper. I sleep through most hockey games and have missed the resolution of half the mysteries I watch. But I've kept my hair!

My medical oncologist, to whom I literally owe my life, was on leave over the summer. Lucky for me, he was replaced by two very experienced oncologists. One was very thorough and ordered a lot of tests. The other had the world's most soothing manner. I appreciate all those qualities in a doctor. Some of the tests this summer suggested that I might have had progression in my bone metastases. I was a little worried I might have to switch to a more difficult treatment regime. Hell, I was a little worried things were going downhill. While the tests used the P-word (progression), the oncologists didn't. They felt, on balance, that my cancer remained stable. Considering that my side-effects have been a little more challenging of late, however, my regular oncologist, when I saw him last week, suggested we cut the Day 8 vino infusion. (Actually, the other doctors had raised the possibility of a chemo holiday.) As soon as my doctor suggested dropping Day 8, a look crossed his face and he excused himself to do some checking. After talking with his colleagues in Pharmacy, he warned me that if I were to see cancer progression without Day 8 vino, OHIP might conclude I had become resistant to Herceptin and cease funding it. I am now on hold. Friday, I will get my Day 8 treatment and will continue to do so unless my oncologist can get some assurance that he would be able to maintain Herceptin and restart Day 8 vino if I progressed. When drugs are this costly, hard choices must be made in a publicly-funded system. All things considered, I am much happier to live in Canada, where most cancer treatment is publicly funded than in other countries where I would, even with insurance, have to pay part of every test and every treatment. I won't go bankrupt fighting cancer, at least.

I'm not sure if in my last post I talked about the effect of Vinorelbine on my immune system. Well, it does a number on it. I get my blood tested before every vino treatment and have been warned that seven to ten days after treatment, my immunity will hit a low point. I was advised to take a number of precautions, most of which I have abandoned after nineteen months. I was to avoid crowds, restaurants, specific foods and especially spoiled food, germs in general. As a result, I decided to stop volunteering at my daughter's elementary school where I was working with the Grade One and Two kids who were a little behind with their reading. I miss that. I really enjoyed reading with those kids, but truth be told, they were a bit of a snotty bunch. Even though I carried Kleenex and hand sanitizer to every session, I couldn't risk continuing to volunteer there. Even without it, I did end up in hospital this time last year. I developed pneumonia again, along with a plerual effusion.

Last year's hospitalization wasn't as scary as the previous two, when I was septic and had a broken pelvis (or both). But it was a little scary. I had several day of delirium and extreme drowsiness. My niece was visiting that week and I couldn't even carry on an intelligent conversation with her. I regret that, not that I had a choice. The pneumonia was treated with antibiotics, but I had a recurrent fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable procedure during which a tube was inserted into the pleural space. Then for several days I was attached to Fred, my name for the suction unit that withdrew the fluid. Eventually, I was disconnected from Fred and allowed to leave the hospital for a couple of hours in time to vote in our federal election. I was released the next day. I think I was in hospital for two weeks, about a week of that in isolation. Fun, fun.

Really, other than the hospitalization, which I expect will be something I experience every year or two, things have been going well. My pain has been well-controlled for a couple of years. As a result, I was formally discharged from the Ottawa Hospital Pain Clinic. Of course, this means I have to go to my family doctor for my pain medication renewals. He doesn't do renewals by fax, except at a cost. So, every three months, I have to present myself to my doctor for renewals of the narcotic and other pain medications. Ah well, there is always room for another doctor's appointment.

I have just been living my life, and glad to do so. I try to make memories with my family, which is increasingly difficult now that we're living with a teenager. I'll give her credit. She was very grateful for the two week trip we took to Cape Breton Island and Moncton this summer. She is a grateful kid, with only occasional flares of "teenagerness." For this, I am grateful. Together we did the Run For the Cure earlier this month. We were out of town visiting my sister-in-law the weekend of the Run, so we did it in Mississauga. We both missed our teams, hers her elementary school teachers and mine a metastatic team. But we ran in the morning, before spending the afternoon with family and driving home to Ottawa.

I have no good excuse for not blogging more. Just that I'm living life. And isn't that what it's all about? Here's hoping in another five years I post again, if not sooner. 

Stage IV Snapshot: Broken Rib

Part of everyday life with bone mets is never knowing when a fracture is around the corner. I would have thought, at this time of year, my biggest risk would be slipping on the ice and breaking my hip. The actual culprit:

Yup, the dog. I was in bed yesterday when Mango came up and stood her front paws on my chest. A few hours later I noticed the pain. The good news is that the pain only lasts a few days. Ribs heal quickly enough. I know this because this isn't the first broken rib I've had since cancer came into my life, the last break was around Christmas. At the time, I blamed it on exertion while carrying the Kitchen Aid mixer up from the basement to make cookies.

This is life with Stage IV. Cookies, puppy kisses. Each risks a broken bone.

Three Years

It was three years ago today that Geoff and I sat down with a surgeon at the breast clinic and got the results of my biopsy. I was diagnosed with stage IV invasive ductal breast cancer with metastasis to my liver and bones.

The average life expectancy for someone with stage IV breast cancer, particularly with metastasis to the organs, is three years.

Three years.

But I am not a statistic.

Stage IV Snapshot: the pill box

Today I had to fill my pill boxes for the week. I count out all the right pills for the right time of day. The little blue set I keep beside the bed. I take those pills as soon as I wake up. They are mostly pain pills, long and short acting, to get me going. I usually awaken very stiff and sore, particularly in my lower back and hips. I also take some stomach pills then. They work best if taken a little while before eating. The other pills pull out of the big case one day at a time. If I will be going out of the house, I transfer them to a smaller daily case that has room for extra short acting pain narcotics to deal with breakthrough pain. I have pulled something in my back or ribs. I am pretty certain it isn't a fracture, so I didn't get an x-Ray, but the pain requires frequent top-ups of my Dilaudid. The daily pills are taken with breakfast, lunch and supper, and finally at bedtime. So, best case, I take a handful of pills five times a day. In reality, because of the breakthrough pain, it is much more often than that.

Here is what I take on a good day. The breakthrough Dilaudid aren't there. See, I told you. Handfuls of pills.

If you were wondering about that little white pill in the middle. That is Tamoxifen. That is the ONE pill I take that fights cancer. One pill. I take it with supper, my biggest meal, because it is very hard on the stomach. Due to the Tamoxifen, I also take two Prevacid and four Maxerand a day to quell the nausea. It usually works. This afternoon I will go to the cancer centre for my treatment. No longer on chemo, I am still getting Herceptin by IV to stop the cancer. I get it every three weeks. I will also get Pamidronate today to help my bones rebuild, I get it every nine weeks, if my creatinine level doesn't creep too high. Pamidronate is hard on the kidneys and my kidneys are showing the strain. Herceptin can damage the heart. Thank God that hasn't happened yet. I get an echocardiogram every three months to check my ticker. So far, so good,

Most of my pills are for pain. Four Naproxen, a NSAID also known as Aleve. Three hydromorphone contin, a long acting narcotic said to be stronger than morphine. Then there are three Lyrica for nerve pain. I also get the occasional epidural to help with nerve pain. Oh, and because all the narcotics make me sleepy, I now take Ritalin in the morning and at noon. Ritalin is a stimulant. It works paradoxically in people with ADD to calm them down. It generally wakes me up. I don't take it every day, so it's not in the picture. I took it yesterday at noon and nevertheless I was groggy by one o'clock. It doesn't work perfectly. And then at night I take an Ativan. It is an anti-anxiety drug that I take to be able to sleep through the night, I think I am hooked on it now, I don't like that much, but I am very cranky when I don't sleep, so I keep taking it

A picture tells a thousand words. That is why I use my Stage IV Snapshot blog posts to give you a picture of my life with advanced breast cancer. I don't believe that the millions that are spent on breast cancer awareness have done much real good. In addition to taking attention away from other cancers unfairly, breast cancer awareness hasn't spread awareness of key facts, like how many of us are at risk of breast cancer. One in nine women will get it. Men get it too. And did you know that nearly a third of patients treated for early stage breast cancer will have it return outside the breast as Stage IV cancer. They thought they were cured, but there is no cure for breast cancer.

I try to raise awareness of life with Stage IV breast cancer, whether it is the emotional side, or like today the pharmaceutical side. I hope I can make a difference. Let me know.

What's New With Me

What's new with me? Very little, I'm pleased to report.

I saw my oncologist this past week and got the results of the latest series of tests. The Herceptin can harm my heart, so I need an echocardiogram about every three months. I did the test earlier this month and my "ejection fraction" rate is just fine. I had also had a CT scan, the first since January, I think it was. My GP likes to be able to deliver good news, so he had already let me know that my tumours are stable. The remaining liver spot appears "treated." There is nothing new in the rest of the abdomen and pelvis. The bone tumours are still there but stable. My oncologist's colleague, who I saw last visit, had ordered an MRI of my axillary skeleton. The previous MRI, to which it was compared, was from May 2012, about halfway through my chemo. As a result, there were some new spots that showed on the MRI. Nothing to worry about. More importantly, the MRI showed fatty infiltration, which in English means the bones are healing.

I asked the oncologist to check out my right breast. That is where the lump was, the lump that started shrinking after the first chemo treatment. Until recently, the lump was gone and the remaining fullness was barely perceptible. That has changed. Now it feels like a lump to me. I have had some pain in that breast as well, off and on. I was a little worried. I had always felt relieved that I hadn't needed a mastectomy. For the first time, I wish that breast was gone. My oncologist, who I trust very much, didn't think it is worrisome, he said it felt "stringy." We will keep an eye on it. If it changes further, a mammogram may be needed.

In other news, Dad and I have been busy all month dealing with financial advisors and the lawyer, settling Mom's estate. There are some forms still needing to be signed. And we haven't even started cleaning out her room.  This will take a while. Meanwhile, I try to call Dad daily and see him a couple of times a week. He is coping well, but is lonely. I miss her too.

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.

A Milestone: 20,000 Page Views

Wow! Sometime in the last couple of days, this blog has hit a milestone I never anticipated: 20,000 page views. This is something that merits celebration, and gratitude.

I started my cancer blog after a short career as a geaneablogger (about family history) mostly as a way to keep family and friends aware of how my treatment was going. I knew many were getting the info through my mom and their parents. I'm sure some details got lost in translation. It was also difficult to tell the whole story over and over. My blog gave me a chance to write it down, once and for all.

My secondary purpose for the blog was to raise awareness of breast cancer. For a while, I gave my readers a monthly reminder to "check your boobs!" I think I felt that I might have caught my cancer earlier if I had done regular self-examinations. Then, as I became more educated about breast cancer, I realized that self-exams and mammograms aren't the be all and end all for finding cancer. That's when I dropped the words "breast cancer awareness" from the blog's title and went for the straightforward "Kate Has Cancer."

I received some criticism for the change. Is it defeatist to call myself Kate Has Cancer on the blog and Twitter? No, it's realistic. Remember, I have Stage IV breast cancer. I have had advanced cancer since they found it. Chemo, radiation and the other therapies have shrunken my tumours -- you can't even feel the one in my breast -- but many of them are still there in my liver and bones. My blood tests are fine. so I figure, if my liver can live with these tumours, then so can I!

Over time, another purpose for my blogging has emerged. I hope that others with advanced breast cancer can find, in my blog, some peace, some information and some hope. I don't focus on the latest news from clinical oncology. I talk about my treatments and the resources available to me here in Ottawa. Judging by the Blogger Stats, my most popular post, with nearly 600 page views, is perhaps my most practical one, on PICC line covers. I hope my link to a crochet pattern helped someone with cancer or even someone who wanted to help someone with cancer. I've had 800 views of my About Kate page, which I imagine could use an update. Almost 400 read my early post about how I started onto this cancer roller-coaster. Around 300 read two of my glimpses into the terror of Stage IV cancer, Reflections on Recent Deaths and Someone Took the Monster Out of the Cupboard. I have seen my readership rise to, on average, 200 page views per post. I never expected this. I may be Italian, but I don`t have that many cousins!

That brings me to the grateful part. I thank you readers for continuing to read and support me. Your comments on the blog have given me new perspectives and great support. I also thank God that I'm still here to write! Every day, every post is a blessing. I must also express my appreciation to my fellow bloggers who have directed considerable traffic my way: Ann at Breast Cancer? But Doctor....I Hate Pink!, Nancy at Nancy's Point, Jenny at Putting the GRRRRR in Grimes, and Nancy at The Dirty Pink Underbelly.

I hope to be here many more years. And I hope you stick with me. Thanks for coming.

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.

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.

Metatastic Breast Cancer Day

Yay! Today is the official day to, um, celebrate, or perhaps to recognize, metastasized breast cancer.  Hooray!

If you really want to do something about metastasized breast cancer, find a way to contribute to finding a cure.  Don't wear pink for me, though I do appreciate the thought.  If I am to live to see my grandchildren, what I need is a cure.  Please consider giving to an organization like the Canadian Breast Cancer Foundation which contributes a significant amount of its fundraising to research.

To all of you who pledged your financial support for my participation in last month's Run for the Cure, thank you.  You have made a difference that just might save my life.

Please think before you pink.

What the Future Holds

I may have mentioned in previous posts that I understood that if my tumours continued to shrink, I might get a break from chemo this fall, while I would continue with the drugs Herceptin and Pamidronate (the cancer-stopper and bone-builder, respectively). I knew that because I have advanced breast cancer that I'd be on and off chemotherapy for the rest of my life.  Apparently it will be more "on" than "on and off."

Last Friday, Geoff and I met with my wonderful oncologist to get the results of my latest CT scan.  We got good news. The tumours in my liver continue to shrink. They are still numerous, but under 1cm in size, except for one. That last large tumour has continued to shrink and is now about the size of the end of my pinkie finger. By the way, my blood tests for some time have shown that my liver is functioning well despite the tumours.  I figure that if my liver can live with cancer, so can I.  The tumours in my bones appear to be stable; no better, no worse.  Contrary to what I was expecting, there were no new fractures. I believe the CT looked at my breasts too. The results didn't give any measurement of the original breast tumour. I don't know if that means it's completely gone or if they just didn't measure it.  It doesn't really matter.

My oncologist reminded me that Stage IV breast cancer is a chronic disease. Like other chronic diseases, such as diabetes and even depression, medical treatment doesn't take a break. He also explained that the unfortunate reality of breast cancer is that, eventually, each chemo medicine stops working. He hopes to get as much benefit as possible from each chemo treatment.  So, I will continue to get Taxol every three weeks, "as long as it is working and it is well-tolerated."

I have to be honest, I was disappointed to get the news. Somehow, I'd dreamed up a chemo-free future where, for one thing, it might be easier to return to work. I have to rethink things. I have to accept that the chemo will continue. So every three weeks I will have a few days where I feel tired and nauseous, and have sore fingers and toes (my weird side-effect).  I don't know how well my hair will continue to grow.  My chemo-brain syndrome will continue to interfere with my speaking.

I get a tiny break though.  No chemo on September 28; I start again October 12.  That means I won't be recovering from chemo when I do the Run for the Cure on the 30th, that I can attend a retirement party on the 28th, and that my nephew's wedding won't be on a chemo weekend.  See?  All good.

"Don't Count Spots!" and Other Friendly Advice from my Oncologist

I saw my oncologist yesterday and he took the hammer out to get it through my head to stop worrying.  And I have been worried.  I have a lot of tumours in my liver and bones.  Unlike some Stage IV women with a single spot here or there, mine are "numerous."  The radiologists can't even count them all.  And what if they move into my lungs or heart or brain?  Dr. G said, "Don't count spots!"  Stage IV is Stage IV as soon as there is one tumour outside the breasts or lymph nodes.  There is no Stage IV and a half.  No Stage V.  It's Stage IV and the treatment is the same whether it's one spot or "numerous" ones.  I need to relax...

He also clued me in to some more of the side-effects I've been suffering.  My runny nose and constantly tearing eyes?  Chemo.  I thought it was my allergies but no... which means it's not going to stop anytime soon.  I can try artificial tears, or if necessary, the doctor can give me steroid eye drops.  And the swelling I feel on my back, near the latest fracture, is just swelling.  That's common after radiation.  By the way, my back is still "tanned" and itchy from the radiation I got in November.  I had no idea it would last so long.

I asked my doctor if it was OK to try to lose some weight.  He was ambiguous, to be honest.  It sounds like it's not necessary for me to keep on extra weight as an insurance policy -- because if I stopped eating suddenly, he would treat it right away.  On the other hand, women gain weight with breast cancer, and in truth I had lost weight since December, back when I was at the worst of the ankle and leg swelling.  I think the bottom line is that I can do what I want.  Next question is for me:  do I want to work at losing weight?  Hmm.

Next, the big question:  could I have a drink?  Because of my abnormal liver results and "numerous" tumours, I haven't had a drink since the early Fall.  And some days I really would like one.  Dr. G said "absolutely!"  My liver results are now normal, despite the tumours.  I can have one to two drinks a day if I want.  That would be more than I need, but now that the sun is shining, I am thinking of sitting in the yard with a cold glass of hard apple cider.  Mmm.

About that new chemotherapy treatment that has been in the news, TDM1, he says it's available in Ottawa.  Clinical trials are continuing; approval should come relatively soon.  He'll look into whether and when I might get it.  That said, he did agree that it makes sense to continue the Taxol, Herceptin, and Pamidronate combo as it is still working.  He says all good doctors have Plan B and Plan C at the ready.  And he's taking good care of me.

Update: March 18, 2012

I never did give you an update on my March 9 chemo session.  Lena's March Break got in the way.  Short story anyway; it was fine.

I had an appointment with the oncologist on the 14th.  He was away, so one of the GPs saw and examined me.  She was very pleased with my progress since the last time she had seen me, several months back.  She even said I made her day.

We went over my prescriptions. She is in favour of weaning me off as many drugs as we can. We're starting with the blood pressure medication and one of the stomach medications. So far so good. I'll need to monitor my blood pressure. It had gotten to the point that it was even lower than me usual LOW blood pressure. Cutting the medication back by half should bring my blood pressure a little closer to normal -- and farther from "you better be careful standing up."

We also talked to her about when I could start driving again.  I feel pretty ready already, but figured I would spend some time in a parking lot practicing before hitting the road.  She disagreed.  In fact she was more conservative than Geoff.  She suggested a full month in the parking lot, including lots of practice getting in and out of the car.  She implied it could be a long time before I would be ready to drive the minivan.  I haven't driven it since we bought it, just a five minute test drive in October.  This doesn't make me happy.  I'm feeling stir crazy enough and look forward to more independence.

A CT scan has been scheduled for me for early April, so I expect I'll go over the results with the oncologist in a month's time.  I sure hope the scan will show further shrinkage in the liver tumours and stronger bones.  I'd appreciate your prayers and positive thoughts in advance of the CT. 

With Stage 4 breast cancer, I know the doctors can't cure me (yet).  So I'm looking for a miracle.  Your prayers and energy may make the difference for me.  Many thanks to you all.

What I've Got, Exactly

As I said in my first post, I have been diagnosed with Stage IV Invasive Ductal Breast Cancer.  That means that the cancer has spread beyond my breast and lymph nodes to other parts of the body, in my case the liver and bones.  Usually it goes into the lymph nodes first, but my cancer hasn't been found there; it seemed to go straight out to the liver and bones.  I don't know if that's uncommon, but it isn't a neat fit in the breast cancer staging guidelines, a summary of which you can see at this link.

As part of the biopsy, breast cancer is examined to see if it has any of three particular receptors:  estrogen; progesterone and Her2.  My breast cancer is positive for all three receptor.  On the negative side, Her2 positive cancers tend to be aggressive.  On the positive side, positive receptors give the doctors more options, and in the case of Her2 a more powerful option, for fighting the cancer.

At the moment, Stage IV breast cancer can't be cured.  It's treated as a chronic disease.  As my medical oncologist said, my cancer is through me head to toe (literally in my bones), so he's going to treat it head to toe.  This is why my treatment started with chemotherapy, unlike many women's breast cancer treatment, which would begin with surgery.

I can see some patients wanting to start with surgery to get that tumour the hell out of their breast as quickly as possible.  I didn't look at it that way.  And as it turns out, the chemotherapy I've had, which started in late October, has already noticeably shrunk the breast tumour.  I'll have a CT scan next week that should be able to tell us exactly what impact the chemo has had to date.  I have mixed feelings about getting the results.  On the one hand, I can tell, and the doctors have confirmed that the breast tumour is smaller to the touch than it was.  On the other hand, I missed about a month's worth of chemotherapy as a result of having been hospitalised and receiving radiation therapy in late November. I'm afraid of how much the cancer may have advanced during that time.  The scan should be able to measure the breast tumour as well as the liver tumours, of which there were many.  It won't have as much detail about the bone metastases (mets).

What I can tell you about the bone mets is that they have weakened my bones in a number of places, to the point of causing fractures.  I have a couple of compression fractures in my lower spine as well as a non-displaced pelvic fracture.  The radiation therapy last month focused on these areas.

The greatest part of the discomfort my cancer has caused me is due to the bone mets and fractures.  I need a walker, and in tight spaces a cane, to get be able to walk.  I really can't walk one step under my own speed.  The walker helps to keep the weight balanced on both sides of my body so that I don't further damage my pelvis.  If the pelvic fracture were to move, become displaced, I would likely need surgery to reposition it and secure it with a pin or strap.  I don't want that.  The recovery would, I'm sure, be much longer and more painful.