Laurie is… Not Done Yet

April 17, 2009

send_binary1

One of our own has just had her book published. Not Done Yet …Living Through Breast Cancer. I received my copy over Spring Break, my daughter was relaxing and my son was playing in the neighborhood with his friends so I decided to sit down and get started.

 

My first thought when I started reading was this book is a quick and easy read. Quick yes… but as I read further I do not think easy is the correct adjective. What Laurie writes about is not easy subject matter. She has taken a very difficult subject and written it into an easy to read format. I read through Parts One and Two very quickly. I sat shaking my head in agreement when my experience was similar. We all know that even though we may be diagnosed with breast cancer… there are many types and therefore many different treatments that may be prescribed.

 

The hard part for me came in Part Three: Metastasis, or “Worst Case Scenario”. This was so hard for me to read. I do not have metastasis and I did not want to imagine myself dealing with what Laurie has had to deal with. I put the book down for a day or so. Then I told myself… “This is not about me… this is Laurie’s story so just suck it up and keep reading.”

 

I took the book to my hair appointment and continued reading. I am so glad that I did. I learned much about Laurie throughout the book. From the colorful “knitted” cover photo right through her last post about learning a life lesson from her dog.

There were entries that I laughed while reading… Monday, July 3, 2006 as her boys pretended to be Wolverine.  The most touching entry to me… Wednesday, October 10, 2007 Etching Myself in their Memories … spontaneous tears ran down my cheeks right there in the hair salon. I share those same haunting thoughts.

 

I am glad that I had the chance to learn more about Laurie. I applaud her courage, her creativity and her approach to life. “Metastatic cancer has not ended my life; it has just caused me to live my life differently.” If my story becomes more similar to Laurie’s, I hope I proceed with the same courage and positive outlook.

 

As I read each post I found myself checking the date of the post and then checking today’s date and reflecting “okay, that was a year ago or two years ago”… thank goodness… she is not done yet!!

Advertisements

No chemo for YOU! NEXT!!

April 16, 2009

(cross posted from Coffee and Chemo)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can’t live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today’s treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said “wrong.”

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go….

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!


Why is that funny?

March 17, 2009

(cross posted, and edited a bit, from Coffee and Chemo)
——————————————————————————————-

On our way home tonight, tired and giddy, my kids and I were laughing about the whole cancer thing. (I know it sounds strange but, trust me, it was funny)

“What is a support group?” asked my youngest daughter.

My eldest daughter jumped in and answered that my support group is “for women with cancer.”

“Not just any old cancer,” I pointed out.

“OK, women with breast cancer,” my eldest corrected herself.

“Not necessarily breast cancer,” I corrected her this time, “women with metastasis.”

“What’s metastasis?” my youngest asked, still confused.

Here, my son jumped in “cancer that is not going away.”

It might sound like a heavy conversation, but it was really quite lighthearted.

I mentioned that, earlier in the day, my sister mercilessly referred to my group as “poor, sick people who sit around talking about cancer.” my eldest, my son, and I burst out laughing.

“Why is that funny?” my youngest asked, even more confused.

“It’s not,” I answered, after a brief pause…. “which is why it is so funny!”

And we burst out laughing some more.


what if?

March 10, 2009

“We have all the tools to eliminate mortality from Her2 positive breast cancers in the next 10 years.”

Dr. Eric Winer, Director, Breast Oncology Centre, Dana-Farber Cancer Institute (February 28, 2009, 9th Annual Conference For Young Women Affected By Breast Cancer).

Her2 is a protein. And it fuels cancer cells. Her2+ breast cancers are always very aggressive and, had I been diagnosed before Herceptin was widely available, I am sure that I would not be alive today. Now, a whole host of new drugs are being developed to attack this breast cancer that affects primarily younger women.

Dr. Winer’s words are among the most hopeful that I have heard in a long time.

And then today, I heard a story on the CBC about a man who is being forced to choose between taking an oral chemotherapy drug for his brain cancer or feeding his kids. It’s heart-breaking.

And, I can’t help but wonder, what if, when the Herceptin stops working, neither my government or my insurance company will pay for the next course of treatment? What happens then?

Dr. Winer also noted that 30-40% of all women with breast cancer metastases will eventually have the cancer spread to the brain. He told us that Herceptin doesn’t pass through the brain and suggested that all women with metastatic her2 positive breast cancers have brain scans done every 6 to 12 months. Guess what I am going to be talking to my oncologist about during my next appointment? (Although, vinorelbine, the chemo drug I’m taking is sometimes used to treat brain mets. That’s reassuring).

I hope this is making at least a little bit of sense. I have a raging head cold and am feeling pretty muddled. My spouse was laughing at me this evening, reminding me that I am always very stoic about the big things (like, say, having a liver the size of a watermelon) but a garden variety head cold turns me into a whimpering puddle of goo.

I guess I am reminded that, generally speaking, I am very healthy these days. And that, in itself, is very hopeful.

This brings me to my second favourite quote from the conference:

“The best predictor of doing well is doing well.”

-Dr. Winer.
Cross-posted from Not Just About Cancer.


The 20-Year-Plan

February 5, 2009
(cross posted from Coffee and Chemo)
———————————————————-
Something has been bothering me for a while now.
 
A few weeks ago (or maybe it was a few months ago), during one of my meetings with my oncologist to discuss switching to Taxol, I casually asked if this change is going to “interfere with my 20-year-plan.”
 
My doctor immediately became serious.  “Who gave you that number?” he queried, adding “I did not give you that number.”
 
“I know,” I responded, reassuringly.
 
I completely made up that number.  It is a random number, representing my intention to live with this cancer-thing for a long time. 
 
But then, I got worried.
 
“Why,” I challenged, joking, “is it too short?”  Then, I added, verbalized my fear, “Or is it too long?” 

But my oncologist would not play that game.

“I do not do numbers,” he declared, quite seriously, “You know that.”

I do.  But the Pandora’s Box was open.  Perhaps I was just living in my own little fantasy world.

So, today, I got up my courage and asked, “Am I deluding myself?”

Now, though this conversation has been plaguing me for months, it was not immediately obvious to my oncologist that I was referring to his comment about my 20-year-plan.  So, I reminded him of our conversation and, a little bolder now, repeated my question.  “Am I deluding myself?”

“It’s a bit of a long shot,” began my oncologist. (ouch)  I imagine my face fell a bit. “I am not telling you something you do not know;” he continued, leaning forward in his chair, eyes locked on mine, “you are familiar with the statistics.  But you also know that I do not make predictions.” (yeah, I know)

He cited a patient of his who has been living with metastatic breast cancer for 23 years. (He did not give me any details, of course)

“It is reasonable,” he continued, a bit softer, “to plan for the future.”

And, though it is unusual for him to give his opinion about what I should do, he added, “I think it is right to live your life that way.”

I wish I could remember exactly what else he said, because he gave me a rare compliment about how I am handling living with cancer exceptionally well.  It was really nice.

Then he asked me if I knew I had 18 months left to live, would I do anything different?

I said I would get things in order.  To which he responded, quite sternly, “you should do that anyway, and it has nothing to do with cancer.” 

Then he continued, “my guess is that if you knew that you had only a year and a half left to live, you would accelerate your lifestyle, not slow it down.”

I conceded that his assessment was accurate.  But still, I persisted. “I talk with my children about the future, even about the long-term future.”

I wanted him to understand that it was important to me not to be deluding myself, and also not to be deluding my family.

He got it. 

“Planning for the future is the best thing you can do for both you and your children.” 

He wanted to make sure that I got it too.

I got it.


sometimes about cancer

January 19, 2009

My personal blog, Not Just About Cancer, is having an existential crisis. I don’t seem to write that much about cancer these days. A more appropriate title might be in order (“Occasionally About Cancer?” “Not Just About Life, Kids, Dogs, Books, Weather Extremes and Cancer“?) but then how would people find me?

I was interrupted by the phone ringing. This is the subsequent telephone conversation, transcribed pretty much verbatim:

A (nurse who works with my oncologist, returning my call about my most recent CT scan results*): “May I speak to Laurie, please?”

Me: “This is Laurie.”

A: “Hi, it’s A. from the cancer centre.”

Me: “Hi A.”

A: “Everything’s fine. No change.”

Me: “Yay! Yay! Yay! Thank you, A!”

A: “You’re welcome! Bye!”

The cancer centre’s stated policy is that they do not give out results over the phone but my oncologist has been making an exception for me for a while now. If they ever do ask me to come in, I will be very suspicious.

So, I am happy to say that I have nothing new to report on the cancer front. I will continue on with treatment every four weeks, until it stops working. And with every clean scan, I know I’ve gained a little more time.

*I just tried to link to the post about my most recent scan (it was last Wednesday) and found that I didn’t write one. Instead, I wrote about the weather and losing my dog. It appears that, while they still make me anxious, CT scans are less newsworthy than the cold and my pets. Lucky me.


the day my life changed

December 2, 2008

I had an echocardiogram today. They are a pretty routine part of my life; I have them every few months to make sure that the Herceptin isn’t damaging my heart. So far, so good.

It’s kind of boring lying there, so I started to play a little game with myself. When I lay down at the beginning of the test, my resting hear rate had been 65 bpm (beats per minute), when I worried about my results, I noticed that it had shot up to 75 bpm (I could also see on the screen that my heart was whooshing away but I couldn’t tell whether it was doing it’s job efficiently). I took a few deep breaths and my bpm dropped again. I remembered that I have only bought one Xmas present and my rate went back up into the 70s. Up and down it went (I hope that I didn’t affect my results by doing this).

And then it occurred to me that today is December 2nd.

Exactly three years ago, I found the lump in my breast. That day, the world tilted on its axis (I felt it do that as I stood in front of my bedroom closet not quite believing I had this big hard mass on the side of my right breast) and my life was irrevocably changed.

If you had told me at that moment, how the next couple of years would unfold, I never would have believed that life could be as good as it is right now, despite the cancer. Don’t get me wrong. If I could choose to have never had cancer, I would.

I hate having cancer, hate being in treatment, hate the restrictions placed on me as a cancer patient and I do still grieve for all I have lost. There are many, many ways, though, that my life has changed for the better since December 2nd, 2005.

Maybe that’s why, when I remembered the date, my heart rate didn’t budge.

Whoosh! Whoosh!

Cross-posted to Not Just About Cancer.