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.

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.

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.

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.

Update: March 31, 2012

This last round of chemo (yesterday and the previous Friday) has gone quite well, with few side-effects.  Today, the only thing I can complain about is red, hot cheeks.  Yesterday's chemo went by so fast that I didn't even have time to sleep!

I forgot to tell you that a couple of weeks back I finally got into the Ottawa Hospital's Pain Clinic.  My wonderful pain nurse had referred me some time ago, I think back when I was having so much trouble with drowsiness.  I found it interesting that before being seen at the Pain Clinic you have to sign a fairly lengthy agreement to ensure your pain medication isn't abused or shared.

First we met with a nurse there, and then a doctor.  She told me that the NSAIDs are the preferred drug class for pain from bone metastases and prescribed Celebrex.  Quite quickly, I noticed it relieved the pain I've had in my mid-back since a disappointing trip to Red Lobster with the folks (a one-hour wait, mostly leaning against a window ledge, hence the mid-back pain).  Since I've been on the Celebrex, I guess for about 10 days now, I have noticed other pains.  One affects my arms and sometimes legs.  It's a weird pain, mostly like I need to move around.  It kept me up the other night.  I've also been feeling the liver tumours and the pain formerly known as my endometriosis pain.  Mysterious.  At the Pain Clinic, they see patients every week or two, so I'm back there pretty soon for a check-up and maybe and adjustment of my pain medications. 

Chemo Update: February 19, 2012

I had my chemo treatment again last Friday.  As promised, the doctor reduced the Taxol dose by 20% and I believe he changed the dose of steroids given before the Taxol.

The session went as normal.  What was new was that my mom and dad came to visit, to see what the chemo was like.  They left as the Benedryl drip was ending.  At that point, Geoff came in and watched me sleep through the rest of the session.

Early in session, I noticed a dietitian speaking to some of the other patients.  Given the lost appetite I've been suffering after chemo, I may ask to meet with her myself.

That said, I haven't yet noticed any loss of appetite since Friday's chemo.  From the previous week's chemo session, my appetite left on Saturday and returned on Thursday.  I expected it to be gone by now, but it's not.  In fact, I really enjoyed my cereal for breakfast this morning.

The other thing that is new is that I noticed this morning that the swelling in my feet was virtually gone.  You wouldn't have believed the swelling I had on the tops of my feet.  But now I have a normally shaped foot.  You can almost see my ankle bone too!  This is incredible.  In fact, I went over to the scale and was amazed to see that my weight had dropped about 12 pounds since I was at the doctor on Wednesday.  That's really something!  A lot of water gone.

I have one non-chemo update for you as well.  I've virtually stopped using the walker in the house.  And I've been forgetting my cane here and there, which means I can walk short distances without either cane or pain!  To be truthful, I can't get very far without some pain in my lower back, but I feel like I have regained the strength I had in November before the pelvic fracture and my hospitalization.  Again, this is great progress.

Pretty much all good news.  Hope that pleases you as much as it does me!

Now that I'm awake, I Can Fill You In

Over the last month, I have certainly reduced any sleep defecit I had!  Honestly, I have had days where I napped for hours in the afternoon, slept on the couch all evening, had a normal night's sleep, and then fell asleep reading the newspaper at breakfast.  You have to agree, it's a bit much!

Finding a solution hasn't been easy.  Our working theory has been that my pain level has reduced enough that the level of hydromorphone I was getting in the pump was causing me to get drowsy.  It seems that you can tolerate high levels of this drug withough side-effects if you have high pain levels too.  But once they drop, weird things can happen.  In fact, when they first put me on the pump in the hospital, the levels were so high that I was sleepy and hallucinating.  Truly loopy.  Lately, just sleepy.

Realizing that my pump was set at a pretty low continuous dose, my pain nurse suggested we remove the pump and replace it with the right doses of both continuous and breakthrough levels of oral hydromorphone. We've spent the last couple of weeks adjusting the oral medications. The trouble is, I'm still drowsy.  And I've had more pain, especially in the morning.

My pain nurse, who is fabulous, has referred me to the Complex Cancer Pain Clinic in the hope that it will offer new alternatives that will help me.  Here's hoping. 

Geoff's Take on the Folks at the Ottawa Hospital

On Geoff's own blogsite, he recently posted on the type of people he has met at the Ottawa Hospital.  I encourage you to have a look at the post.

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

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

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

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

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

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

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

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

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

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

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