Wednesday, 25 January 2012

What Breast Cancer Looks Like: Lucia Alloggia

Geoff and I have often mentioned how wonderful our neighbours are.  We've focused on how kind and generous they are, but one, in particular, is also very talented. 
Let me introduce you to Lucia Alloggia.  In 2010, Lucia was diagnosed with breast cancer and underwent surgery, chemo and radiation.  On her website, her 2010 gallery is made up of four paintings chronicling her experience with breast cancer:  The Mastectomy; The PICC; Chemo; and Radiation.  They are fantastic paintings. 

Chemo is particularly touching.  With Lucia's permission, I will reproduce it here:

If you have had chemotherapy, even if it's gone well, you will recognize yourself in this picture.  To me, the slumped shoulders say it all.  Like they say, a picture tells a thousand words.

I encourage you to visit Lucia's website here.  In addition to the cancer series are many portraits, and paintings modelling the styles of the masters.  And did I mention that Lucia is as generous as she is talented?  You'll also see paintings she has donated to the restoration of an earthquake-damaged church in the Italian town of Camarda, where she is from.

I hope you enjoy her paintings as much as I do.  Lucia can be reached by email through the contact form on her website.

My Interview with Local CBC Radio

This morning, our local CBC radio morning show broadcast a story about the local Cancer Society's wig fitting shop which operates out of the Cancer Centre at the General Campus of the Ottawa Hospital.  I was interviewed as a client and Geoff gave his perspective too.

The shop lends used wigs to cancer patients.  If you're concerned about spending a lot of money on a new wig (and it is a lot of money), when you're unsure if a wig would be comfortable, this is the way to go.  If you're in the Ottawa area, you'll be in good hands with wig fitter, Ginette Messier.  She is passionate about helping women, and the occasional man, find a wig that suits them. 

If you'd like to listen to the broadcast, you can find it at this link.

Tuesday, 24 January 2012

Tomorrow Morning on Ottawa's CBC Radio 91.5

This morning, I was interviewed by Robyn Bresnahan at the Canadian Cancer Society Wig Office at the Cancer Unit at the General Hospital.  The segment will be broadcast tomorrow morning, Wednesday, January 25, 2012 between 7:00 am and 8:00 am on the local CBC Radio at 91.5.

Later, I will post the link to allow you to listen to the interview if you missed it the first time.

Sunday, 22 January 2012

Chemo Update: January 20, 2012

After having a chemo break on Friday the 13th of January, I started up again last Friday.  As usual, my first chemo session gives me all three drugs:  taxol, herceptin and pamidrinate.

This was a very usual chemo session.  Just me and Geoff and a few things to read.  And as usual, after the benedryl drip, which always precedes the taxol, I fell asleep.  Of course, I've been sleepy for a week or more.  We're not sure if it has to do with the levels on my pain pump.  In any case, the drowsiness has continued through the weekend.

I took zafron Friday and Saturday to prevent nausea, which it has, but it's usual side-effect of constipation has also been the result.  Let's hope that doesn't last too long.

I realize this isn't a very interesting post, but let me tell you, a chemo session with little to report is a good thing!

Friday, 20 January 2012

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.

Tuesday, 17 January 2012

Wish Me Luck: Oncology Appointment & Test Results

Tomorrow I'm meeting with my oncologist.  At least, I hope it's my oncologist; often it's one of the GPs that assists him.  They are very good, but I want to see the big guy.  Particularly this time.  Last week I had an echocardiogram and a CT scan and I will have blood tests done just before the oncology appointment.  I really want my oncologist to give me the results, particularly if it means he's going to change my treatment plan.  As his nurse suggested at my last appointment, I will call her and remind her that I'd like to see the big guy; she'll do her best.

The echocardiogram was to check my heart health, because herceptin treatment is tough on the heart.  I know that the chemo treatment caused me to have high blood pressure, which is being treated effectively with metoprolol.  The CT scan looked at my breasts, abdomen and pelvis.  It should tell me the size of the breast and liver tumours.  I hope the CT scan will also tell us how well my broken pelvis is healing.  It's feeling better every day, as far as I can tell.  But I'd like a second opinion.  The blood tests, together with the others will decide whether I have chemo on Friday or not.  I need to have sufficiently good results in a number of areas, such as my blood count and calcium levels.

Like I said, my pelvis seems much improved, and I've told you that the breast tumour has shrunk quite a bit.  But I am worried about the one-month break from chemo as a result of my hospitalization in November.  I know that radiation was working on killing cancers in my lower spine and pelvis at that time, but how much was cancer growing in other areas over that period of time.  What will the CT results tell us?  Do I have less cancer or more?  Are my tumours bigger or smaller?  Are there new ones or did some disappear?

How much has chemo and radiation helped?  How much has prayer helped.  We'll never know, but there's time enough for a little more prayer before the appointment Wednesday at 3:00 p.m. Eastern Time.  Wish me luck, pray for me, whatever you're comfortable with.  And I'll let you know how it went as soon as I wrap my mind around it!

Saturday, 14 January 2012

Fuck Cancer Followup: Malignant Melanoma

I just saw this video on Facebook and had to share it with you:  Dear 16-year-old Me.

If you were 16 when I was, you suntanned with baby oil.  Clearly, it's not just your damn boobs you need to check.  Please share this with the 16-year-olds you know... and everybody else.

P.S.  Don't worry about me.  I saw my dermatologist this fall and he checked out my moles.  Nothing suspicious looking.  As far as we can tell, my moles are just beauty marks.

Friday, 13 January 2012

Fuck It! Cancer, that is

As I mentioned in an earlier post, when my GP told me I likely had cancer, my reaction was "fuck."  But that isn't the only use of the word with cancer.  A friend recently sent me a link to an article in the Globe & Mail "Dropping the F-bomb on late-stage cancer" about a cancer education charity established by Yael Cohen.  The article says the charity has sold 10,000 "Fuck Cancer" and "F--- Cancer" t-shirts and raised $1 million.

I like the idea of telling cancer where to go.  With apologies to my tender-eared readers: Fuck Cancer!  Even better, is the goal of the charity, which you'll find on its website:

Fuck Cancer is a movement that activates Generation Y to engage with their parents about early detection of cancer. Over 90% of cancers are curable if caught in stage one- why the Fuck don’t more people know this? We’re creating a generation of early detection ambassadors who, by learning about what to do to stay healthy, what to watch out for, and what questions to ask, are taking control of their own health and the health of their parents.

Fuck Cancer is focusing on early warning signs and detection to focus on catching cancer when its curable.  Believe me, I sure wish my cancer had been caught when it was at an earlier stage.  Anything Fuck Cancer can to to help others avoid a cancer diagnosis, or catch it early, is good work indeed.
Check out Fuck Cancer's website to get more educated about various types of cancer.  For most types of cancer, the website offers a cheat sheet and infographic.  For breast cancer, information on self-examination is also there.  You know how I feel about breast exams:
If you want to fuck cancer, check your damn boobs!
If you want your significant other to do the checking, that's fine with me.  Fighting cancer is a team sport.

Sunday, 8 January 2012

Chemo Update: January 6

I had chemotherapy again on Friday, January 6.  As usual, Geoff came with me, but this time two old friends visited as well... somewhat to the chagrin of my otherwise cheerful nurse.  We are really only to have one person accompanying us to our chemotherapy treatment.  I suppose that keeps the noise down for everyone else.

This session, I just received the Taxol, along with the drugs that are given with it.  One is a steroid and another is Benedryl.  The Benedryl is given right before the Taxol.  The result is that I get really sleepy pretty quickly.  I always bring books and puzzles to while away the time during chemo, but every time, I end up getting drowsy or falling completely to sleep and if you would believe it, later on, I get drowsy at home trying to re-read the same part of the book or trying to do the same puzzle.  Very frustrating.  I would think that this doesn't make me a very interesting person to visit, but my old friends didn't seem to mind -- as far as I could tell through my droopy eyelids.

All those drugs are given through the PICC line, which is convenient enough, except that it can interfere with my pain pump delivery.  During certain IV treatments, I have to disconnect the pain pump.  Given that I'm spending that time sitting quietly on a bed, it's not generally a problem that I'm not getting my pain medication.  But with all the saline they pump into me, I do generally have to make a couple of trips to the bathroom down the hall.  With luck, I can reconnect the pain pump and give myself a shot before dragging my bad leg down off the bed and down the hall.  If you're curious, I don't use the walker for these trips.  I have to bring the IV stack, as it's still infusing medication as I head to the bathroom.  So I just unplug the IV power pack from the wall and put my weight on the pole to make it to the bathroom and back.  Haven't had any trouble so far; I just don't look very graceful.

Friday's chemo session started at noon, so I had some lunch there in the hospital bed.  I packed a light lunch of celery and peanut butter, crackers and clementines, with a cup of milk. And a cookie too; it's Christmas.  I've been choosing the hospital bed over the chairs for chemo lately.  I like being able to change positions easily in the chair.  Plus they have convenient tables on either side for your stuff.  But with the swollen ankles I've got, I figure I am better off in the bed, where I can keep my feet up higher in the hope the swelling will lessen.

So, Friday's session was pretty routine at the hospital; the only change being my extra guests.  I wasn't as tired as last week, but I was unsure how I would feel in the evening.  We were invited to attend a friend's bonfire that night.  It sounded like a lot of fun, but I wasn't sure how accessible it would be for me in my current physical state and I wondered if I'd be exhausted like after the previous week's chemo.  So I let Geoff and Lena go with one of Lena's friends and I stayed on the couch at home.  Just as well.  I ended up with stomach cramps just after they left.  Nothing too bad or too long lasting, but I was uncomfortable for about a half an hour.  Geoff later assured me that the layout of his friend's bonfire would have been easy for me to access, so I hope to be able to attend the next one.

Overnight, I had more problems.  I woke up feeling hungry, I thought, but not quite wanting to eat.  And I'm not "authorised" to go down the stairs alone, so I just lay there in bed hoping the discomfort would pass.  It didn't really.  It became more of a stomach ache, even nausea.  I didn't like it a bit.

Eventually morning came and I took the Zofran pill the doctor recommended.  Zofran is one of the anti-nausea pills that is available to chemo patients.  My doctor had cut my dose from one or two for each of the five days from the start of chemo to only taking one dose the day of chemo and the following day.  My doctors tend to be of the "if you need it, take it; if you don't need it, don't" school.  As a result, and hoping for a better night, before going to bed Saturday I took another Zofran and I brought upstairs my bottle of Stematil, another anti-nausea medication that I'm prescribed on an as needed basis.  It turns out I didn't need the Stematil overnight, but I'm glad I had it at hand.  All I had was my usual sore back by 5am.  It's not easy to find 8-plus hours of comfortable sleep positions when you have a broken pelvis and several broken vertabrea.

Awareness note:  In addition to the Stematil pills that are prescribed to chemo patients, we are also given vials of injectable Stematil which we can call the community/home-care nurses to come and inject anytime if we find we can't keep anything down.  It really is comforting to know that the system is working to take care of us from all these angles, day and night.

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.

Saturday, 7 January 2012

Where You Get Your Info: Some Tips

I'm on the skeptical side.  While I get a lot of information from the Internet, I'm pretty particular about where I get it. 

I see I'm not the only one.  I wanted to share the post I recently saw on Caroline's Breast Cancer Blog titled "Finding Cancer Information".  Her number one suggestion, and mine too:  go to reputable sites.  I have a number of links to such sites on my Links page, along with links to a few cancer blogs I have found worthwhile.

I suppose that what you consider reputable and what I do might be very different .  Caroline and I lean towards reputable, traditional medical sites.  If your beliefs are more on the side of alternative medicine, you may not find our suggestions helpful.  But maybe you should check them out regardless.

Thank you, Caroline, for taking the time to address this important issue.

They Tell me Attitude is Everything: A Reiki Perspective

Virtually everyone I talk to either encourages me to keep a positive attitude or comments on how positive my attitude already is.  I always feel a little guilty when they say these things, because I do have moments of fear and negativity and because I don't really know how to keep a positive attitude.  I'm mostly just grateful that when I wake up in the morning I feel positive.  I give God all the credit for this.  I don't have the power to fight cancer with a positive attitude alone, but He has been helping me.

Soon after my cancer diagnosis, I found something else that helps me to keep a positive attitude.  It's almost an exercise regime for positive attitude and I'd like to share it with you because I see the value it has for everyone of us.  This "regime" is a set of five principles of Reiki.  In a future post I'll talk more about Reiki and my experience with Reiki treatment.  These principles of Reiki, having been translated from Japanese, appear in various wordings over the Internet.  These are the words I use:
Just for today,
  • I will not be angry.
  • I will not worry.
  • I will be grateful.
  • I will do my best.
  • I will be kind to every living thing.
Many of you know that I'm a pretty particular person; I call it "a commitment to excellence."  Geoff says I should be starring in "How to deal with difficult customers" training films.  OK, I won't deny it.  And the truth is that I can be just as demanding of myself, which is pretty exhausting.
These five principles, with the intention to follow them for as little as just today, give me an opportunity to focus away from the negative.  Cancer gives me plenty to be angry and worried about.  But what is the upside of focusing on that anger and worry?  What will it give me?  Nothing.  So, instead, I try to be grateful for what I have.  And I try do my best where I can.  I focus around the house.  My disabilities keep me from doing many household chores that I would like to.  But I can load the top rack of the dishwasher, and sometimes the lower.  I can cook on the stove top, but can't get anything heavy out of the oven.  And then there's the "be kind" principle.  Over my birthday weekend, I had a number of experiences with service staff who had a lot to learn.  Instead of my usual approach of being increasingly demanding, I decided to be extra understanding and supportive.  Strangely, it felt better.  It was like I felt a load lift of my chest by not beating them up for their inadequacies.  Who knew?
There is no telling how much attitude will or won't contribute to surviving cancer, but without a doubt attitude plays a huge role in terms of quality of life.  These five principles, as something to pray, meditate on or just mull over each day, give me a reminder of how I can keep my attitude positive. 

Like I said, it's like a positive attitude exercise regime.  And maybe you should try it too.

Patterns for PICC Line Covers

One of my friends does a lot of needlework for charity. I should have expected that soon after posting my blog on my PICC line that she would find a pattern for attractive, durable PICC line covers.  Thanks, M!

If you're looking to make a knit or crochet PICC line cover for yourself, a loved one or to donate, check out these patterns and see how they work:
The Finding Jenn Project is focussed on helping people with Cystic Fibrosis.  I'm guessing that just about any children's hospital or cancer centre would be pleased to receive donations of PICC line covers.

Thursday, 5 January 2012

What is that bump on her arm? The PICC Line

If you have seen me since the end of October, you may have noticed a bandage on my upper left arm or maybe you saw a bump under my sleeve.  What's up with that?  It is a PICC line, or a peripherally inserted central catheter.  Essentially, it is an intravenous access to my superior vena cava.  What it looks like is an IV tube sticking out of my arm, with a bandage behind it.  I like to think it makes me look a little like Seven of Nine, but maybe not.

By the time I first saw the medical oncologist back in October, my arms were black and blue from all the blood tests I'd had.  The technicians were having a really hard time getting at my veins.  Sometimes two, three or four attempts were needed before they could get the blood they needed.  Meanwhile, blood was pooling under my skin and the bruises were lasting up to a month.  That didn't bode well for chemotherapy.

But there are options for chemo, since they expect our veins to get a rough workout.  Sometimes a Port-a-Cath is used.  In that case, a device is implanted below the skin near the collarbone and injections are made directly through or into it.  The Port-a-Cath has the advantage of being totally sealed, so bathing and even swimming are no problem.  Unfortunately, I develop keloid scars, which could easily be triggered either by the implanting of the devise or by the repeated injections into it.  I didn't want to take that chance, so chose to go with the PICC line. 

The PICC line involves a single injection in hospital, followed by a chest X-ray to ensure the line is in the proper place.  There was no pain at all involved in the installation of the PICC line and I don't feel it all (a very, very few people do feel it).

PICC line care is fairly straightforward.  I need to keep the dressing dry, so I have bought a bunch of plastic sleeves at the hospital to wear during showers.  The dressing also needs to be changed weekly.  A home-care nurse comes every Friday to change it.

No more injections, no more bruises.  The nurses use my PICC line for everything now.  The chemotherapy IV is connected to the PICC.  My blood tests, required a day or two before every chemo session, are also taken through the PICC line.  My pain pump, which was originally installed in another part of my arm subcutaneously, is now connected to the PICC line, which I am told works more effectively.  And when I was in the hospital in November, they used the PICC line for my IV fluids, antibiotics, blood transfusion, and other medication.

One time that I was at the Cancer Centre for blood tests, I was given a fabric PICC line cover that volunteers had provided.  It was made of a subtly patterned white material.  It dresses up the PICC line a bit compared to the hospital's usual elastic bandage.  Geoff and I were thinking, however, that it would be easy enough to make up a bunch of fabric PICC line covers in a variety of attractive colours and patterns.  I even bought some yarn with the intention of crocheting a black cover.  Black goes with everything, of course.

Apparently, the PICC line can be left in place for as long as a year.  If that saves me the poking and prodding and bruises of the average blood test, I'm happy to have it!

Tuesday, 3 January 2012

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."

Monday, 2 January 2012

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.

What I Need to Do Every Day

  • Take my medication:  at breakfast, lunch, 2:00, supper, 8:00 and bedtime.  It's easy to forget a few of them.
  • Take my temperature to be sure I don't have a fever again.
  • Walk with a walker, or in a tight space a cane.
  • Do my arms and leg exercises.  No weights.
  • Decide whether to wear a wig, a hat, a scarf or go commando.
  • Drink plenty of water.
  • Put on a LOT of skin cream.  Where I had radiation the on my back and pelvis is finally getting better, but my legs and scalp are still very, very dry.
  • Put on over-the-knee compression stockings to try to stem the swelling in my feet and calves.
  • Put my feet up for a few hours.
  • Check whether I'm due for the home-care nurse to put on a new cartridge of painkiller on my pain pump.
  • Each Friday:  have the home-care nurse change the PICC line cover that connects the IV to my left arm and bloodstream; change the tubing on my pain pump.
  • Pray.
  • Meditate and visualize my healing.  This is another thing that I've found harder to find time for.  If I leave if for the end of the day, I fall asleep before I get very far into it.  I need to make time for this.  Whether it works or not, it gives me a tremendous feeling of wellbeing and of being loved and cared for by this world and the next.

How it Started: October was Breast Cancer Awareness Month

It is ironic that I was diagnosed with breast cancer in October, breast cancer awareness month.

I was one of those people that was -- let's be honest -- annoyed by the pinkness of October.  Pink ribbon this, breast cancer that.  Blah, blah, blah, we're all aware of breast cancer.  Or are we?

Apparently my awareness of a couple of key concepts regarding breast cancer was appallingly, life-threateningly low.  I was aware that breast cancer exists.  My awareness pretty much stopped there.

I thought that as long as I didn't have a family history of breast cancer, I had no real risk of developing it.   Anyone who knows me, knows my maternal grandmother died only recently.  She was days short of her 99th birthday.  Her own mother died in her mid-nineties.  I'm a smart girl, so my conclusion from these two "facts" was that I would certainly live to 100.

The thing is, only a small, small proportion of breast cancer patients actually do have a close family history of breast cancer.  If I looked far enough, I would find at least one grandaunt with breast cancer.  And my grandmother's longevity is no guarantee for me.

So, there I was, on our Canadian Thanksgiving weekend, processing the very real prospect that I had metastacized breast cancer.  Within a couple of weeks, a core needle biopsy confirmed that I have Invasive Ductal Breast Cancer which had spread to my liver and bones.  Stage IV breast cancer.

Suddenly, I was aware that I hadn't checked my own breasts for lumps in a long, long time.  Too long.

I hope that I can help improve breast cancer awareness among others, ideally before they are diagnosed with this disease.  But from my own experience, I know that you have to have your eyes open.  I've learned that I'm not invincable, nor immortal.  Neither are you.

Let the awareness begin.