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Wednesday
May152013

Angelina Jolie's Brave Decision

When Angelina Jolie's opinion piece came out in the New York Times yesterday, revealing that she had a double mastectomy followed by reconstruction, as a result of testing positive for the BRCA1 gene, there was a lot of discussion and chatter by various media outlets and by social media.

I applaud Jolie for her bravery and willingness to share her experience with the public. By doing this, she will be able to shed a greater light on breast cancer in general, and its genetic issues. Knowledge is power, and anyone going through a battle with breast cancer knows that you need to stay well informed in order to make the best decisions for your own case.
As a mother of three daughters, I can also understand where her mind was when she received the bad news. No, she didn't have breast cancer. But she had pretty high odds of getting it. With the passing of her mother, as a result of breast cancer, and at such a young age, there is no doubt in my mind how difficult it must have been to think of her own children, and the unenviable position she found herself in.
When I was diagnosed with breast cancer, six years ago, I was not aware of the extent of my family's history with the disease. I knew that one of my aunts had ovarian cancer, and that another also had breast cancer, but after my first surgery, a lumpectomy, more family members came out of the woodwork. As the margins were not clear after the initial surgery for the lumpectomy, I had to go back for more surgery, and had to decide whether I would have another lumpectomy or, as there were no guarantees they'd get all the cancer on the second try, go in for the mastectomy.
It was during the days of contemplation prior to my decision that I heard that not only did I have two cousins that were diagnosed with cancer when they were in their forties, five out of seven of my father's sisters had been diagnosed with breast cancer, another sister had passed away from ovarian cancer, and two out of four brothers had prostate cancer.
My decision became much more crucial. I had already decided to go for a full mastectomy, but now I needed to think of the other breast as well. It was also recommended that I go for genetic testing.
After a few months of testing and waiting for an operation date, I had a double mastectomy and reconstruction. It was a gruelling ten and a half hour operation that, first, had my oncology team in to remove the breasts, the cancer and test my lymph nodes for any sign of cancer cells that could be spreading. The second part of the operation had my plastic surgeon's team reconstructing my breasts, using tissue from my abdomen; in more medical terms, a tram flap.
It was a few years following this operation that I started genetic testing. Much of this involves a detailed family history, so that doctors can determine whether or not it's worthwhile going through the blood tests that would indicate whether I was a carrier of the BRCA1 or BRCA2 gene. My decision to go through with the genetic testing was partly for myself, and partly because I had three daughters, and two sisters who would benefit from the information contained in my results. If I was a gene carrier, I would have a much higher chance of getting ovarian cancer, and would have another difficult decision to make. My daughters would have a much higher chance of acquiring breast cancer as well, and would be in the same situation that Jolie found herself in.
The decision was made to go through with the blood tests. I would be called back in a few weeks to get my results. During this time there were many things that went through my mind. I would have to decide, sooner rather than later, that I would have a full hysterectomy.
And I was scared; not only for myself.
I was scared for my daughters, still so young, and their futures. What if breast cancer hits them even earlier than it hit me? I thought of the implications of carrying one, or both, of these genes. Should I get life insurance for the girls? Should I get a safety deposit box and put the results in there, only to be taken out at a much later date? If my daughters were told that I was a gene carrier, they would not be eligible for life insurance in Canada. My sisters, who were already considered high risk, because of me, would have to be tested themselves.
Even while I was afraid, my logical self also thought that, at least, I would have a clearer picture of why I got breast cancer.
It was a beautiful, but cold, sunny day in February of this year that I went to the hospital to get my results. To say I was nervous would be an understatement. In my usual take charge way, I had mentally prepared myself for any bad news. Similar to the day that I was diagnosed with breast cancer, everything was moving in slow motion. I was in a daze, but remember things in vivid detail. I was on an emotional roller coaster as I sat in that hospital waiting room. Alone.
And it was with sweaty palms, like a prisoner in court awaiting the judge to read their verdict, that I sat across from the genetics councillor to get my results. After a few bits of information, that, frankly, I don't even remember, she said the words I longed to hear: you tested negative for both genes.
Relief cannot amply describe my feelings, at that point. The information that followed was a blur as well. And when I left, my results on one piece of paper, neatly folded in my purse, I sat in my car and cried. Tears of relief, tears of gratitude and tears of joy. The emotions that had been cooped up for many months spilled out on my steering wheel and down my winter coat.
I know how it feels to be there. And even if you're a movie star, those decisions remain the same.

Sunday
May122013

Happy Mother's Day

It has been six years since my life took a drastic change with my diagnosis of breast cancer.    Back then I was a forty five year old that had finally started taking her health more seriously....I had started running, and was training for a half marathon. But I was also a workaholic, had more of a type A personality, had run for public office....twice, a superwoman....took care of all the children's activities and their various appointments, and tried to keep up with a social life while living in one city, and working in another.

Phew!!! I feel tired already!
Then came the day....a few months after I ran my first half marathon. Twenty pounds lighter than I was before I started running, I felt fantastic! I was in better shape than I had been since I was a competitive swimmer, track and field runner, and ballerina in my teens and early twenties. That day I lost some blood from a nipple on my right breast. It was a small amount....the size of a needle head....and I probably wouldn't have seen it, if I hadn't been wearing a white bra.  That spot of blood would come and go, but never went away. 
I knew something was wrong. 
And in April of 2007 I heard the words, from my newly appointed oncologist, that nobody wants to hear...."You have cancer". 
That's the day my life changed. I was dumbfounded, confused, mad, in denial and hurt....not physically, but mentally. How could this happen to me????? I had three daughters, aged thirteen, eleven, and seven at the time. My mother and one of my sisters lived seven hours away from me. The other sister was closer, but several hundred more miles away in other ways. 
I felt alone.
These are real feelings felt by many cancer patients and survivors around the world. They come and they go.
They are more pronounced when first diagnosed.  Once treatment starts, cancer patients tend to be vey concentrated on getting better, and are not as concerned with the feelings of isolation. 
Once treatment is over, the feelings of depression and isolation tend to come back twofold. Many worry about what is to come next..... Suddenly the doctor visits go from two weeks to three months. 
That is the bad side of cancer.
But there is another side to things. The one where the cancer patients decides in their mind that they are going to survive. The one where they start to really appreciate the small things in life. The one where family takes a truly special significance, and the people who have stuck around, not only through treatment,.....but more importantly....way after that...are an important part of your life. The one where you are incredibly grateful for your children, and you give thanks for them every day when you wake up. The one that uplifts you, almost to tears, when you are running the last kilometre of your half marathon. The one where you are sooooo happy to celebrate the special holidays with your family and loved ones beside you. The one where your are incredibly happy to be alive. 
Nobody can feel this as much as a cancer survivor. 
And that is what I'm feeling today. A mother, to three incredible daughters, a daughter to one incredible mother (who has been there for me through thick and thin), and a sister to one.....who is still very far away (but I hope will come closer one day), and one who is had become more and more close to my heart.
It's Mother's Day, and I have appreciated celebrating this day, more and more, since I have survived cancer.
 This has been a wonderful weekend spent with my daughters. The first one since I have survived past five years.  They have shown me how important I am to them too....by giving up much of their time to be there with me. 
Thank you.
And to all mothers out there; whether cancer survivors, or not.....Be grateful, be happy, and enjoy your day immensely. 

 

Friday
Apr262013

Change....It's Your Decision

Recently, a good friend of mine wrote me, wanting  to introduce me to an esteemed colleague, and friend, who has cancer.  She wanted me to meet him, and felt I would have a lot to share with him. She spoke to him about me as well. She shared this blog, and my history.

And yesterday I met him for the first time. 
I'm always a little nervous before I meet someone I don't know regarding something as personal and life changing as cancer.
But we instantly bonded, and the conversation was easy and flowed naturally. At first our discussion revolved around  his particular case, and the decisions he would have to make for his treatment path, moving forward. Not an easy feat, to say the least. 
As it is with all cancer patients, and survivors, we compared our individual experiences. Many of them  are similar, with, perhaps, slightly different outcomes.  For example, those who have had this disease have all gone through the inevitable natural selection of friends.  In my case, one of my best friends of more than twenty years disappeared after my cancer diagnosis. On the other hand, some mere acquaintances;  people I hardly knew, were there for me at every turn. 
Following our discussion, I reflected on a few things. I have since accepted some of, what I perceived at the time, as "deceptions" from friends gone by, who were unable to handle the sad fact I was struck with the disease.  Some people are just not equipped to handle the intense feelings and heartbreak of seeing a loved one who is sick.  Others were of the absurd, yet completely real to them, impression that they could actually "catch" cancer from me. In any case, the people that surround me now, are the true souls who were there when I needed them.  My life, as it is now, was simply meant to reflect the internal changes I went through on this truly remarkable journey. 
It is these subtle, yet transformative changes in a cancer survivor that gives us our strength. People naturally resist and fear change. We are human beings that are just comfortable in what we know, and how we feel; no matter how toxic those feelings or situations may be. Lissa Rankin's Daily "Your Inner Pilot Light" spoke about change in today's edition:  "We try to protect ourselves from change by clinging to what we cannot make unchangeable, then we mourn it....even when what we lost really didn't make us happy in the first place. 
She concluded with " Change is inevitable. Suffering is optional."
This struck a cord in me, as a cancer survivor.  Anyone who has had cancer, and anyone who has been with a cancer survivor through their journey, can attest to the fact that the disease is life transforming. It changes you. 
I, as many of us, was afraid of change. I was scared, more than words can describe, the day I heard the words "you have cancer".  In fact I went into immediate denial.
I'm too young.....I still have so much of my life to live......So much to do...What will my young children do without their mother?.....
I  scratched, clawed and resisted any way I could. I cried. I wanted to cling to my old life; the healthier and carefree me.   
Many of the survivors I know went though this as well.
However, what isn't always the case with every cancer survivor, is that I didn't really suffer. Yes I lost my hair to chemotherapy. I went through the terrible depression of coming down from the steroids I needed to take with every chemotherapy treatment. I had a severe allergic reaction to one of my chemotherapy treatments, and would have died, if not for the watchful eye of my mother, who had accompanied me that particular day.  I went through a ten and a half hour operation, and four blood transfusions, to remove my breasts and have them reconstructed with skin from my abdomen.  I saw the sorry looks from a thousand people; some who knew what to say,  others who didn't.  I had four subsequent  operations following the first two....some that I couldn't anticipate or prepare for.
But through it all, I made a choice. I chose not to suffer. I chose to survive. I believed I'd be well. 
So Lissa's wise words can be applied to us as well. We cannot change the fact that we got cancer. But we can decide whether we suffer. The mind is a very powerful tool in the art of overcoming a disease. 
And suffering IS optional.
 

 

Thursday
Apr182013

Welcome Back

 This week I did something that I hadn't done in longer than I'd like to admit.   I went for a run.   Now one would ask why I haven't gone out for a run in awhile;  especially  since I've been writing a blog on cancer survivorship and running over the past two and a half years.
 A few months ago in mid-November  I had my last surgery.  It was the sixth surgery that I had related to my breast cancer diagnosis.  When I had the double mastectomy in  August of 2007,  I also had reconstruction done at the same time, using tissue from another part of my body.   The reconstruction was well done and I was very happy with it.  Unfortunately, after time, and when everything had settled, the breast on the side I had cancer in became noticeably smaller.  So for the past few years I have undergone a couple of surgeries to correct the situation.
Once this last surgery  was over, I had the standard six week period of no exercise....running included. This brought me into the month of December, and the Christmas season.  One thing led to another and before I could blink, the New Year had been rung in, and 2013 was off to its start. 
And so there I was, in early January; one of the coldest months of the year, where I come from. The snow banks were huge, thanks to record snow falls in December, and my motivation was low. For some reason I cringed at the thought of putting on my coldest winter running gear, my ice grips and getting out the door. 
And I have always loved running outdoors. No matter how cold, or what the weather forecast is.  
 
But this year I didn't. 
There are many reasons why, and none at the same time. Suffice it to say that a couple of months later, and a trip to Florida, I still wasn't out on the road.....or even a treadmill for that matter. Sure, I had been walking. I have two dogs, and I'm out with them all the time. There's nothing I like to do more at the beach than go for a long walk with a loved one.  While in Florida walking was a daily occurrence. 
Then came Monday, April 15th.  The day of the Boston Marathon. Although I have never run it, I always get excited for those that are there.  Having run several half marathons, I can easily imagine the excitement in the air, and the delighted anticipation of the runners at the start of the race.  
And I put on my shoes and went for a run. It was fantastic and everything I had hoped for. Inspiration and hope for the future.
Then I returned home to the news from Boston.  How horrible!  Gut wrenching.  My sympathies go out to the families who lost a loved one, and to all those innocent victims; runners, spectators,  volunteers, race officials, and law enforcement, who were traumatized or injured as a result of this senseless act of terrorism.    I hope they find the perpetrators, and that they receive their due punishment.
But the running world is strong and resilient. It reminds me of the world of cancer survivorship; a second family. There is a strong sense of camaraderie and friendship in both worlds. It's all about positivity and humility.  Runners, like cancer survivors, stand up for one another. They lend support, encouragement and inspiration.
And so yesterday evening,  in the middle of rush hour, across the Charles River, in the parking lot of a bar in Boston, a group of three hundred runners did a commemorative four mile run  following a 26.2 (the number of miles in a marathon)  moment of silence.  Feisty and resilient, these runners sent out a clear message. You can't knock them down.  Although this race was targeted, they wanted the world to know that nothing can stop a runner from what they love.
If I wasn't inspired to get back on the road then, I sure am now.
 
I'm back!
And I, too, will run another race!

 

Tuesday
Apr092013

Back to My Normal....or Where I Was All Along

A few days ago I had my regular biannual appointment with my oncologist.  Going on six years later, the process, strange as it seems, is still the same....... I get a case of the jitters, and start a list of topics I'd like to discuss with my doctor.  In some circumstances I write my pivot nurse, Dail, and send the questions ahead of time so she can speak to my doctor, and have the answers ready for me when I get to his office. I see my doctor, ask the questions I want answered, and then go home, or to work, with a deep sense of relief that I'm OK.....in fact I feel like a rock star!


Prior to this appointment, there had been a few medical articles published regarding tamoxifen, the drug I'm on. When I started it, the prescription length was for five years. Medical specialists and researchers are starting to suggest a period closer to ten years instead. I wanted to have a discussion with my own physician regarding these most recent studies, and his suggested treatment for me. 


I knew when I was driving over to the hospital that there was a possibility that I would have to remain on my medication for a longer time. At the same time, I was really......really....looking forward to coming off of it, and getting "back to normal".  The behind the scenes story, and one that most people don't talk about, is that this medication is known as the twenty pound pill. Does every patient that takes it gain twenty pounds? Probably not. But I did. 


And I wanted off of it. I wanted to run with that extra weight off. Imagine running, or walking, with that extra twenty pound sack of potatoes all the time.....


As with everything since being diagnosed with breast cancer, life is different, and the twists and turns that I have been subjected to in the past with this disease will continue in the disease free life that I know now. I left the hospital with the understanding that if I wasn't going to be on one pill, I'd be on another. 


And I realized that the "normal" I was looking for was no longer my normal. It hasn't been my normal for six years now, when my new normal started.  


In fact, my new normal is way better. Since I have been cancer free, I have gained a few friends, and lost others. I have changed my lifestyle and become much more health conscious. I eat healthy and exercise regularly. I meditate, and have developed a more positive attitude. This blog, I truly hope, is helping more and more patients and survivors find their happy space, as well as the inspiration to find that special light in their "new normal".  I have been a public speaker, and love talking to high school aged children about my experience, and about the importance of learning to maintain a healthy lifestyle at a young age. This summer I'll be walking to raise money for women's cancers during the "Weekend to End Women's Cancers" at the end of August. 


This IS my normal, and it's so much better than the normal I have been looking for in my future. Sometimes we spend too much time and energy coveting one small thing in life...and we get lost in there. It's similar to those who are never happy with what they have.....They always want that special something that is bigger and better.

 

When all the time........it's been under your nose.

 

So here I am, once again, smelling the flowers (albeit figuratively........please, please, please go away snow) and dancing in the rain (that I can do). Being grateful for who is in this journey with me....pills and all.