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.

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.

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.")

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.

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.

Oncology Results: January 18, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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.