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.

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.

Stage IV Snapshot -- Bad Girl!

We have been talking about getting a dog. So when we found out our neighbours were going away, we agreed to look after Lily. She is one of the most lovable dogs on the planet. Although it is certainly a big adjustment having a dog in the house, I see the upsides to the extra work.

Lily is a young dog, a one year old Golden Doodle. She loves to play. Sometimes, all it takes is to toss the ball for her. She even does this crazy dog thing when you make a sudden movement. But Lily also likes tug of war. The other day, I made the mistake of trying to play tug of war with her. I lost. I also hurt myself. I hope I didn't cause a new vertebral fracture. With the amount of pain killers I'm on, it's hard to tell. Not good. Bad girl!

Epidural Update

I've been meaning to update you on the caudal epidural I had on Tuesday afternoon at the Ottawa Hospital's Pain Clinic. For those of you considering the procedure, I'll tell you a bit about how it was done and I will report on success and side-effects to date.

First, The Procedure

I was met by a nurse who interviewed me about my current pain medication and pain levels. After a bit of a wait (I'm not complaining), a young doctor I hadn't met before came in. I'd seen him consulting my regular anaesthesiologist moments before. He asked me a lot of questions about the extent of my pain and nerve symptoms, explained the procedure and its risks and then asked me to sign a consent form.

Moments later, a handsome young man -- who Sweetie thought was dressed for a joust given his head to toe x-ray shields -- took me into the room where the procedure would take place. He introduced me to the female X-ray technician and asked me to mount the bed. Yes, "mount." The bed was at a 30 degree angle. I was to aim my hips at one pillow and my head at the other. Now I'm not very athletic at my best... and Grace is not my middle name. So, it is a miracle I made it on there in one try. Then things got weird. I mentioned that the caudal epidural goes into the tailbone. Well, I hadn't thought through how they would get there. You see where I'm going with this? Yes, that's when The Jouster pulled my pants down around my hips. But we've just met!

He also set me up with a blood pressure cuff and the little thingy that monitors your blood oxygen. Then the young doctor came in. They placed a drape, wiped my butt with disinfectant, which I later discovered was that bright pink stuff that is hard to scrub off. Probably the worst pain of the procedure came next, when they gave me a local anaesthetic. I didn't feel much, maybe some pressure, when the doc inserted the catheter through my tailbone. The Jouster kept me informed of each step of the procedure, and reminded me to breathe deeply to relax. I felt more pressure as the doctor injected some contrast dye to mark his location. He continuously asked the X-ray tech for another shot, sometimes asking her to switch the angle of the X-ray machine for a better view. All that to make sure that the drug was released where my frazzled nerves needed it most. Next thing I knew, the steroid was being injected and the catheter removed, neither of which I felt. I was then unhooked and moved to a wheelchair for 20 minutes of monitoring... And a snack, which I appreciated having fasted through lunch.

The After-effects

The first few steps after I left the wheelchair felt a little funny, but I'm always stiff when I get up. Plus, my bum was numb. We stopped to pick The Bean up from our neighbour on the way home and I was able to stand a while to chat. Later in the evening I was drowsy, but that isn't unusual. I couldn't really tell if the epidural was working. I was told it could take a week to get the full effect. I thought I was feeling fewer zings. That was good.

The next day, I felt fine most of the day. In the evening I had some chills. I also got wicked indigestion after eating a chocolate bar. I also felt in a peculiar mood for a short while. By the next morning, it was clear that I was reacting to the steroid as I did during chemo. Thursday, my cheeks were hot and red all day. I was told I looked like I was teething! The chills continued off and on, as did the indigestion. I felt quite low, chemo low, for a couple of hours Thursday and again Friday. For what, I ask you?

This is the problem, the zings haven't completely disappeared. I do think they are fewer and farther between, but they are not gone yet. If I had to decide now, I don't think I would repeat the procedure. But let's give it a few weeks to see what the real improvement is.

It wasn't really pain I was hoping the epidural would relieve. The medication change in early May did that. It was the lingering nerve damage, which left long enough will become permanent. I want to be able to lie down beside my girl at bedtime, I want to brush my teeth, I want to pass the potatoes without feeling a zing up or down my back. That's all I'm asking for. We will see if I get that.

Epidural Time: Wish Me Luck!

I am fasting now, in preparation for my caudal epidural this afternoon. To avoid nausea, the Pain Clinic asked me to stop eating six hours ahead. I still have a few minutes where I can drink clear liquids, then nothing for two hours.

The epidural will go into my tailbone and be threaded up to my mid-back, where bone mets caused my vertebrae to shatter before I was even diagnosed with this cancer. There, a steroid will be released, which we hope will relieve some of the nerve pain I have been experiencing. Maybe I will be able to say goodbye to the zings that go up and down my body every time I bend a little, like doing something as risky as brushing my teeth. I get a lot of muscle pain in my mid-back too. I think the muscles are trying to firm up what the bones can't. I don't know if the epidural will help with that.

There are a few risks associated with epidurals. If the spinal cord is nicked you can end up with a headache, or dead, if I understood that right. Perhaps I shouldn't Google as much as I do. No, really there were helpful documents online about caudal epidurals. And the anaesthesiologist explained it to me at my last visit. This procedure is safer than an epidural for labour. First, they go in the tailbone, which is farther from the spinal cord, and second, the procedure is guided by X-ray to ensure they know where they are before releasing the medication.

I am not worried or nervous. I think. In fact, I think my greatest concern is that I have to skip lunch. Really, I better go now. I just have ten minutes left on clear liquids. I`d like to get a few more calories in me before I have to stop drinking. Cranberry juice? Oh that reminds me, a possible -- and temporary -- side effect is urinary incontinence. Oh great!

Wish me luck, friends!

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.

Working to Stay Ahead of the Pain

I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.

Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...

When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.

The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.

With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.

I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob.  Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.

Call Me Mabel, Stable Mabel

This morning I saw my oncologist to get the results of the CT scan I had last Friday. Everything is stable! I will admit that I really liked the CTs I had during chemo that showed my liver tumours shrinking dramatically. OK, I wish I was NED (no evidence of disease). But I am happy to be sable, Stable Mabel.

This was my first CT scan since I began Tamoxifen treatment. I had thought of this drug only for its value in preventing the recurrence of breast cancer; I hadn't realized it was used for metastatic disease as well. I thought I was going to have to do chemo for the rest of my life. [Yes, there is SO much I don't know!] My bone marrow is glad for the chemo break, not that Tamoxifen is completely benign. I have had increased joint pain, significant nausea and, most recently, hot flashes. It's almost as bad as my chemo, Taxol. But it isn't as toxic. Knowing that my doctor has so many drugs to use against my cancer (triple positive ductal breast cancer) is comforting. In fact, the doctor mentioned that it appears that cancer cells are forgetful. They lose their resistance to particular chemo drugs after about a year. That allows the oncologists to retry a drug that stopped working. It gives me hope that I will be around for a while.

I swear, I cry almost as much after good news as bad. My Sweetheart and I admitted some of our fears to my oncologist. My doctor is, and always has been very optimistic about his ability to treat my cancer as a chronic condition, rather than a life-threatening one. The truth is that right now my cancer is not threatening my life. i really should relax a little. Both the doc and my Sweetie would like it if I stayed off the Internet and forgot about median survival rates. They have a good point, but it would be hard. I feel a great deal of comfort and support from the breast cancer blogging community. Plus, I want to use my blog to keep my loved ones up to date and to, I hope, be of comfort and support to others.

[My title was inspired by Jen at Learning to Live Lengendary and her post "Missing Mabel.")

We Can't Not Treat It

Yesterday, we saw Dr. M, my radiation oncologist. The first time we saw her, over a year ago, we were a little bowled over by her approach. Unlike most doctors we see, she took us on a journey through her thought process. She did the same thing yesterday, and I like it. I came out feeling like I understood exactly how and when I would be treated, why I would be treated and even what the risks of the treatment would be. Really, that shouldn't be too much to ask.

Having looked at the CT and X-rays as well as the orthopedist's report, Dr. M was clear that my hip needed to be treated. The problematic tumour is in the femoral neck, the thin part of the femur leading to the ball that fits into the hip joint. It is a vulnerable spot. I should get a call soon to go in for marking in the next 10 to 14 days. The marking (tattooing, actually) is done before the radiation to allow the beam to get the right spot each time. After that, I will get five sessions of radiation to the femoral neck as well as up towards the ball and down a bit into the femur. She informed me that after the radiation, the blood vessels in the area would dilate, which may put me at increased risk of fracture for a period of time. While this risk is known, there isn't sufficient research to determine how long the increased risk would last. Given my health (good compared to many cancer patients) and mobility, she estimated that within a month, my hip should be healed. We also talked about the possibility the orthopedist would recommend surgery, or a fracture would require surgery. She assured me that the radiation and resulting dilation would not have an impact on any subsequent surgery.

As you may know, typically with breast cancer, patients receive 20 to 30 sessions of radiation after surgery and chemo. Bone metastases are treated very differently. Dr. M does five to ten sessions on bone mets. As I understand it, they limit the number of sessions because the radiation can seriously affect patient's bone marrow.  This isn't an issue when the breast is being radiated.

I am preparing myself for two side effects from the radiation. First, I am likely to experience some increase in bone pain in the days after the radiation sessions. That shouldn't last long. I may also get a "sunburn" from the radiation. I still have a darkened, dry area on my back from the radiation I had on my spine. This morning I started applying Dream Cream from Lush to my hip. Perhaps if I keep the area moisturized, it won't burn.

In the meantime, I'm to continue to be careful of the ice. And no jumping off buildings, Dr. M said.  That's a shame. Tomorrow is Superhero Day at the Bean's school. I won't be able to join in.

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.

October is Breast Cancer Awareness Month

A year ago today, I wasn't worried about the lump my gynaecologist had found on my breast.  It felt like one I'd had five years before on the other breast -- a fullness that went away after it had been determined to be benign. 

A year ago today I didn't know that the lump was invasive ductal breast cancer.

I didn't know that my weird blood test results were a reflection of the tumours that riddled my liver.

I didn't know that my aching back wasn't "out" but broken in several places.

I didn't know that most women who get breast cancer don't actually have it in their families.

And I didn't know that men get breast cancer.

I didn't know that in about 10% of the cases, breast cancer has already spread to distant organs before it's found. 

Nor did I know that metastasised breast cancer cannot be cured.

A year ago, all I know was that October = pink  = breast cancer.  I thought that breast cancer was an easy cancer.

Well, it wasn't easy telling my little girl I have Stage IV breast cancer.  No, this year hasn't been easy at all.

In the last year, I have had 14 rounds of chemotherapy, 10 radiation sessions, 4 CT scans, 3 MRIs, 2 echocardiograms and a MUGA scan.  I couldn't count the blood tests, appointments with doctors, nurses, and social workers.  Also, my freezer has been filled twice and I`ve been given at least a half dozen hats and two wigs.

Yesterday I power-walked 5km and raised $1295.00 for the Canadian Breast Cancer Foundation.  It will use that money (most of which was generously given by you, my readers) for awareness, support and research.

Because a year later, there is still no cure for breast cancer.  And I need a cure.

The Bean tells me that anything is possible.  Smart girl.

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: February 15, 2012

I'm overdue to update you on last Friday's chemo session.  Plus, I met with my oncologist this morning and got some unexpected news.

First, chemo.  It went pretty much the same way the last couple of sessions have gone.  The chemo itself is fine.  Afterwards, though, I end up tired and lose my appetite.  I haven't eaten much since Friday.  Even my favourite things, like Saint Hubert chicken and cream of wheat, I could only eat a bite or two of them.  My cousin Sam mailed me some of my grandmother's best cookies, genetti.  Even the genetti I have to eat slowly to get them down.  It's a shame.  Still, considering how difficult chemo is for so many patients, I know I'm getting off easy.  I can't really complain.  And that is why my appointment with my oncologist was somewhat surprising.

His focus is on maximizing my quality of life while controlling my disease.  He wanted to get my liver metastases under control and then reduce my chemotherapy.  The last CT scan showed that the liver mets have shrunk significantly, but it appeared that the bone mets had grown.  My oncologist pointed out that it takes months for bone mets to heal, and for the healing to be visible on a scan.  His interpretation of the CT results is that the bone mets may have grown while my chemo was interrupted in November/December, but they are probably responding as well as the liver mets are -- we just can't see it yet.  He's now going to reduce the amount of Taxol I'm getting by 20% to improve my quality of life (that is reduce the extent of tiredness and lost appetite I'm experiencing).  On another note, he will be reducing the amount of steroids I'm getting with the Taxol, which should reduce my swelling.

In a couple of months, he'll repeat the CT scan and if the results are good, he expects to cut my Taxol to once every three weeks, rather than twice.  Eventually, if my results remain good, after another couple of months, he'll cut the Taxol entirely and stick with the Herceptin for "maintenance."

He also mentioned that the liver is the most important organ in my treatment, the one he was most concerned with controlling.  This makes me feel much better, given the dramatic results I had on the liver mets.  I had been worried about the bone mets, but his comments this morning made me less concerned.  I just have to be more patient with the bone mets.  The fact that my pain levels are greatly reduced is probably a more accurate reading on my bone health than the CT scan was.  That's good.

How it Started: When I started to get sick

I've never been seriously ill in my entire life.  That said, I have amassed a collection of chronic, unusual, but quite benign conditions, usually with cute acronyms:  PVC, TMJ, IBS, MVP, and so on.  So when I started to get a little sick in late August 2011, I assumed that, first, one of my chronic conditions was flaring up, and later, that I was developing a new condition common to ehem "middle aged women."

Here's what happened.  The last week of August I had some nausea and diarrhea. I figured that was garden variety Irritable Bowel Syndrome (IBS).  Over the next weekend, I noticed a little bit of pain near my right hip.  This is a funny pain that I thought I knew well -- my endometriosis pain.  I figured that in the four years since my laparoscopy, despite taking continuous birth control pills, my endometriosis had grown back.  Luckily, I had made an appointment for my annual check-up with my gynaecologist for the end of September.  He would take care of the endometriosis.  And believe me, he did take care of me.

In mid-September, I was attending a genealogy conference that I had been long anticipating.  On the Saturday afternoon, I became really sleepy... more than I thought I could blame on the conference speaker!  I went home, climbed in bed and stayed there.  Really, I couldn't get up to get supper for Lena.  And I developed a pain in my upper back, on the right hand side.  That sounded familiar and sure enough, on Monday (I was too wiped out to make it back to the conference on Sunday) I talked to some colleagues who had had gallbladder trouble.  Our group diagnosis was that my gallbladder was unhappy, maybe full of stones.  Gee, take out my ovaries and my gallbladder and I'd be ready for action.  But as you know, that wasn't the problem.

I was able to get an appointment to see my GP about my gallbladder the following week.  Good thing I saw him then, as I developed a terrible lower back pain the night before the appointment, and I needed some painkillers.  After explaining my various pains to the medical student and GP, and to rule out weird possibilities like ectopic pregnancy, I was off for blood tests and an abdominal ultrasound.  I was able to get the ultrasound at the same clinic where my gynaecologist practises, a few days before my appointment with him, so I figured I had a chance to get my results a little early.  Sort of.

When I saw my gynaecologist he said he was sure that, with the birth control pills, the endometriosis shouldn't be back, and he'd been monitoring me on this for four years.  That said, he told me that the ultrasound showed "something" on my liver, so I should stop the birth control.  I "knew" that gallbladder problems can appear in the liver too, so this fit my working theory.  For some reason, however, the doctor decided to do a breast exam, which I don't remember him doing at my previous post-laparoscopy check-ups.  He found a lump.  "Did you know this was here?" he asked.  "Uh, no."  When I felt the lump, it felt to me like a "fullness" that I had had five years before in the other breast.  I had had a mammogram then that showed the fullness was nothing to worry about.  This seemed the same.

So I didn't worry about the breast lump.  But when I got home, I fainted.  I called my gynaecologist and he recommended I go to the Emergency Room.  I did.  They did blood tests that confirmed a number of unusual liver results.  But they couldn't reach the doctor or the ultrasound clinic to find out what exactly was wrong with my liver, so they concluded that I had swooned, adjusted my pain medication slightly and sent me home.

My gynaecologist wasn't done with me though.  He ordered a CT scan of my abdomen, STAT, and put my GP in the loop.  Even after the GP called and told me the ultrasound showed a number of spots on my liver, the Internet helped me believe I had an unusual but fairly benign condition related to birth control use.  I'm pretty good at wishful thinking, aren't I?  Otherwise, I would have had to admit that this wasn't a fullness, but a large breast lump.

Before long, the CT scan results were in.  They showed a number of what appeared to be metastasised tumours in the liver and bones as well as a sizable breast lump that appeared to be a primary cancer.  That's the news I got on the Friday before our Thanksgiving. 

Wishful thinking went out the window at that point.  All I could think was, "Fuck."

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.