Changes

Some things have changed for me. Big time.

1. Absence I have not written on my blog in months. Three months. I continue to write daily but in my journal instead. This daily practice has meant the world to me, giving me quiet, solace, space, and time during my day to reflect, get centred and also escape. I think some of the absence is related to the need for me to keep my thoughts contained, own my thoughts, and in writing on the internet, blogging, you share your thoughts, you give them away... Nonetheless, I am thrilled to know that my Blue Butterfly blog still continues to be read by many and hit 100, 000 pageviews in October. I will share my thoughts as I am ready.

2. Loss I am not as involved in a lot of cancer- and thyroid-cancer related activities. Right now, I feel like I need a break. Today, I just learned a fifth young person who I met through young adult cancer circles has past away. I only spoke to Naomi Baker on a few occasions at the YACC Conference in 2011. I since learned that Naomi is an artist, she has two Mater's degrees, and she was also a teacher like me. She also had this calm spirit about her. Maybe it was the Kris Carr-inspired Crazy, Sexy, Cancer life that she lived. (Naomi shared with me that she attended a retreat with Kris and spent time speaking with her. Naomi promised to connect me with some interesting lectures that Kris did but I never pursued it.)

I felt sad, hurt, and disgusted when I discovered this news. Why is she gone? Like me, she got married this year seemingly suggesting that she had many more years to live. I know she was sick but it doesn't seem fair. Part of me almost wish I didn't meet her, so I do not feel a sense of loss. I know that sounds selfish, doesn't it? Rest in peace Naomi. These losses from the young adult cancer community has been something I think contributed to distancing myself from the cancer groups. In April, I lost a friend to stomach cancer-- her name is Agnes Kwasnicka.

Agnes Kwasnicka, Dr. Kwasnicka, was only 35 years old when she passed away. I met Agnes and her partner Greg through a Toronto Vegetarian Association (TVA) event called the Compassionate Marketplace. Agnes and Greg were volunteering at the registration table and signed me up as a member. Agnes recognized my name when she saw it written down because she had visited this blog. Like me, she was a vegan and as we talked, I learned that she was also a cancer survivor. I still feel a lot of sadness with the passing of Agnes. In fact, I had not written about it on this blog until today. It was too hard. Today, I went to dinner with two of my friends at Fresh. As we took our seats, I realized that I was sitting down at the very booth where I last sat with Agnes. It was about a year ago when I went to Fresh for brunch with her and some of the young adults we met in the cancer community. This was the last time I saw her before she moved out west to be closer to family to spend her last days. Agnes was my friend for a few reasons. She attended my positive prognosis by attending my Celebration of Life fundraising picnic. I am still amazed that she celebrated this day with me, that day I thought I was "cured" based on what my endocrinologist, Endo #4, told me, but technically I was (and still am) in remission which is not a word that thyroid cancer doctors seem to use as is done with other cancers. (In November this year, at the follow-up after my September scan, my new Endo, Endo #5, told me I am "low risk of recurrence" and require "annual follow-up".) As a doctor, Agnes would have known that I will most likely be cured and live a very normal life post-thyroid cancer. She would have also known very well the course her own disease would take. Her prognosis was not positive like mine yet she came out to my potluck picnic with her partner Greg, their two dogs, and a vegan dish in tow. She came. She came to celebrate with me. How selfless!

Agnes also made an extra effort to include me in activities with other young adult cancer survivors. She was wise, thoughtful, and intelligent and I wished so much that I had contacted her when she first moved away. She moved away in January, by February I thought about her and sent her a card in March. When she did not respond to my e-mails and I read her blog with updates, I had a feeling that things were not looking good. Greg had indicated that she was not able to respond to the e-mails but that he could share them with her. I felt silly sending e-mails to Agnes about my upcoming wedding and the plans and seemingly trivial questions. I desperately hoped to communicate with her but it wasn't long before I got the news that she was gone. After her passing, I attended a dinner with a few friends of Agnes from the young adult cancer community. I had a hole inside and I wanted to find others who knew her and could relate. (I had already lost my Uncle C (Horace) just a few weeks prior. Uncle C passed away suddenly on a visit to Jamaica just a few months before our wedding which he was supposed to attend. My husband and I missed him so much.) I attended a memorial for Agnes at Wellspring. In October, I also attended a memorial organized by Greg at St. Michael's Hospital to launch a scholarship in her memory where I was asked to say a few words. Ironically, I knew Agnes in the "cancer world" as a fellow survivor yet many in the "vegan/vegetarian" world, one that I was new to but she and Greg belonged to for many years, did not know she was ill at all. She was such a dedicated volunteer to this cause. Here is an article written by a TVA staff member of the Toronto Vegetarian Association. In her last years, Agnes focused on her life, people, her husband, her family and her activism. I once asked her what she wanted her funeral to be like. She told me she doesn't want to think about that. She focuses on living. At the Wellspring memorial, I dedicated a song Greg asked me to share with other young adult cancer survivors who wished to remember Agnes. It was a song that Agnes requested to have played at her funeral. The time that I knew Agnes was very short, not even a year, but it had a huge impact on my life. The stories about Agnes I hear from others who knew her, she sounds mouthy and "punk rock" and fiercely vegan. (A lot of the young cancer survivors I have met are kind of "punk rock".) I would have loved to get to know her better.

3. Work The third thing that changed for me is returning to work full-time. What a huge change! I didn't think I would last 6+ hours each day teaching up to nine classes and 200+ student again but I made it through the last four months with a totally new teaching assignment. I am teaching Music and French from kindergarten to Grade 8. It's quite a challenge. At the end of the teaching day, I am exhausted. There isn't much energy for anything else which brings me to...

4. My Introverted Nature I am such an introvert. I realize now that I have always been an introvert. As a child, I used to prefer staying in at recess so that I could finish my art projects. Or if I did go out for recess, I would read books or share the books that I made with other kids or hang out with one or two friends. I was a bit of a loner and even if others didn't see me that way, I identified with being a loner. Now in my adult years, post-cancer, I realize that I especially crave the quiet spaces and times that I had during the months of recovery/healing time after surgery. During this time, I would spend hours journaling, blogging, meditating, doing yoga, and reading. During my four day radioactive isolation in 2011, I sketched pictures and journalled lots. Now, I am two years after my diagnosis and I am still trying to make meaning of this introverted nature that feels even stronger. Part of me is scared, terrified by the fact that I am more clearly aware than ever before that life is short and I am even more reflective and introspective than before. I treasure my life and think often about how to make it more fulfilling and happy. It is a bit of a contradiction for me since I have done so many extraverted things in my life and love performing and being in front of an audience. I think I figured out how to function much better now in a world where extraverts get ahead, rewarded, and acknowledged. At heart, I don't follow the crowd and stand a part from the pack.

5. I'm a Writer... I'm a Writer... I'm a Writer I'm a writer and as of late, I have been having these insistent thoughts that I must write a lot more than I have before. A few weeks ago, I woke up at 2:30am on a worknight with the urge to write. The urge was so strong and would not leave me and so I got up and started to write. Another night, I could not sleep after reading a list of African-Canadian children's books written since 2000. The list had twenty books and was very narrow in topical focus, mostly about slavery and the Underground Railroad. Most of the writers weren't African-Canadian. I wondered who would write the books for African-Canadian children now? I couldn't sleep with that thought and lay awake for hours as my mind raced. I want to write but I've got to eat. I have had a few conversations with writers lately and some encouraged me to pursue this passion and it's still to come. My frustration is that I lack energy and time at the end of an intense workday to start working on my books. So recently, I decided to take my eyes off another Master of Fine Arts (MFA) in Writing for Children program at the Vermont College of Fine Arts just long enough to acknowledge what I feel that I need. (I applied to UBC's MFA in Creative Writing program in 2011.) I also need to journal every morning (and sometimes evening) or else the day just does not seem right.

So I've ordered every book from the library about writing and illustrating for children. I need a mentor!!! I need a doula, a midwife, someone to help coach me through the journey of writing for publication. I need someone to help me focus and work diligently to complete at least one book project. The first one I wish to complete is one that I have worked on for the last three years which is about seventy pages in length. So I will be applying to some mentorships in the new year and until I can figure out how I will finance a $ 40, 000+ MFA program at VCFA without any funding from Canada, the United States, or anyone else, I will try to get some writing mentorship (a much more affordable option for me) somewhere. I am meeting other writers more and more and there are so many who offer their words of wisdom and help me see that you can earn a living at this. I am actually starting to see myself more and more as a writer who can actually make a life out of this. Some of my students have started making books that they illustrate. When they show these stapled paper booklets with pencil-drawn images to me, I am so impressed and honoured and excited. I love it! They are self-publishing. They are trusting me to look at their manuscripts. I am sooo excited. I feel sort of like their mentors. So these changes listed hear still mean that there is still a year of changes awaiting me and with that more growth to come. I look forward to it.

Too Young to Die

I was in a funk today (translation: sad) and set up my playlist of Jamiroquai songs. When "Too Young to Die" came up, I immediately thought of Julie Devenny whose funeral is today. The song is a protest against politicians sending young men and women out to fight in the military to die for their country. This is a perfect analogy for fighting the "war of cancer". Each year, over 7, 000 people are diagnosed with cancer in Canada. The cancer death rates for many age groups have decreased but this is not the case for young adults which have remained the same since the 1970s.

She battled breast cancer for five years. I shared a train ride with Julie and Bonnie from the Young Adult Cancer (YACC) Conference in Ottawa last November. Julie was so vibrant, outgoing, and looked like she had a lot more living to do. She died too early at the age of 30. At the conference, Julie was always laughing and joking around and, me being a bit of an introvert that weekend, was more quiet and withdrawn. Yet during our train ride, I got to chat with her and learn about her. I saw Julie's quieter side. Julie's cancer was stage 4. I remember she said that she first found out she had breast cancer after graduation. When she finished her first bout of cancer and was deemed "in remission", she dived into her career as a physiotherapist. She loved her job and worked hard at it but had to leave it once again when she was rediagnosed with stage 4. Julie did not look sick by any means.

Julie's obituary photo. To read Julie Devenny's obituary, please click here.


Julie on the court playing for the University of Waterloo. Coincidentally, I was a student here too but never met Julie at the time.


Less than a week prior to Julie's passing, Andréanne Arcand, who also attended the YACC Conference passed away. I got to know Andréanne during the conference well because she was in my small group. I was intrigued by her peaceful nature and also her spiritual experience with Peruvian shamans. Andréanne had a form salivary cancer. Although her tumours and surgery scars were visible on her face and arms, she was radiantly beautiful. She was selfless and I remember her saying that she was glad that the suffering she was going through was happening to her and not a family member. I could not imagine what it must be like to be at stage 4. I asked Andréanne what she focused on in life. She told me she focused on spending time with her family and friends and living.

Andréanne Arcand, to read her obituary click here


And just a few short weeks prior to Andréanne, Adam Cardinal, another YACC Conference participant, passed away. I don't remember talking to or interacting with Adam but the only memory I think I have of him is sitting in front on the bench in front of the hotel, alone. Was it Adam Cardinal, I saw sitting there, smoking a cigarette? Did I say hello? I don't remember.

Adam Cardinal, to read his YACC profile click here


When I learned about the news that three survivors passed away, I gradually felt numbness, guilt, and some anxiety and disgust. How could this be? I felt a hurt feeling in my heart. I felt worried. How much time do all of the sick people I know have?

When I found out about Andréanne, I went back through my e-mails. I recall e-mailing her. This is what I wrote:


November 9, 2011Blue Butterfly
It was really a pleasure to meet you. I hope you're sleeping in your own bed tonight and out of the hospital. My hope is that your health is stable.

November 9, 2011Andreanne A
Thank you. Yes I am back home since Monday night and it feels great to be able to sleep in my own bed.
It was great meeting you too!

Is that all I wrote?

I became increasingly aware of how limited the time is for many cancer survivors. I think of all of the sick people I know and I felt guilty. Guilty about the fact that I have actually begun to forget that I had cancer at times. Felt guilty about doing things like planning my wedding, putting a deposit on my gown, and nursing an eye infection. I get to celebrate and get stronger and healthier while others get sicker.

But now (as I write this on Thursday), I realize that all of these experiences, it is all life. Life.

Andréanne's words meant she was focusing on life.

On Saturday, I mourned a bit for Julie at home. I mourned for sick survivors. I also mourned the part of me that obsesses and worries, wasting precious time. So I danced when I heard all of my Jamiroquai tunes and from this dance, I felt my mood lift. There is so much living to do.

I cherish the lives of these three young adult cancer survivors who each touched my life in different ways. They were all too young to die and have not experienced many of life's triumphs like getting married, having children, realizing dreams, buying a home, growing old, and many other dreams. May they continue to live on among those who knew and loved them.

Dying from Cancer is Not Losing a Fight

Jack Layton didn't lose a fight: He died of cancer

Lindsay sent me this article about rephrasing how we talk about cancer in regards to the passing of Jack Layton. It was posted in the Tuesday, August 23, 2011 Edition of the Globe and Mail. If a fight is "lost", does that mean that one did not fight hard enough? Some good points brought up in this article.

A Tribute to Jack Layton

This morning I woke up to some shocking news. New Democratic Party (NDP)-leader/Leader of the Opposition Jack Layton succumbed to his battle with cancer early this morning.



You may recall my post with Thy'Ca Survivors where I list his wife Olivia Chow, Member of Parliament, Trinity-St. Paul. Olivia had her own experience with thyroid cancer which was featured in an issue of the Thyroid Cancer Canada newsletter article here. In 2010, Jack Layton was diagnosed with prostate cancer. After treatment on May 2, 2011, he went on to lead "the NDP to 103 seats, more than double its previous high. This was also enough to make the NDP the Official Opposition in the Commons for the first time ever" (wikipedia). (As you may recall from my post A Day Late and A Vote Short, I was unable to vote in this election.) On July 25, 2011, he announced that he needed to take a leave from office due to a newly diagnosed cancer that resurfaced.


Jack Layton steps down to battle cancer

When I heard this news, I tried to find a photograph of Jack Layton that I took the day I met him in 1998. Jack was a keynote speaker at an event that I helped to organize called "A Fair in the Park", an environmental event, at Riverdale Farm in Toronto. This event was part of a larger one called "Serve Your City Day" that I helped organize when I was a team member at Serve Canada. I hosted the launch for the larger event and then later dressed as a clown for Riverdale Farm. At the time, he was a councillor in the City of Toronto. I have met his wife Olivia Chow on a few occasions prior to my diagnosis. On one of these occasions, at my church fundraiser, she was the caller for a "talent auction". She was quite funny and quirky and complimented me on my piano playing. (I played background music at this event.)




In this world, where politics has corruptions and politicians are sometimes caught doing things they shouldn't be doing or not following through on what they said they would do, Jack Layton still emerges sincere and a "breath of fresh air". Olivia Chow and Jack Layton struck me with their commitment to young adults, equity, fitness, and environmentalism. Quite active and visible in Toronto, they attended numerous events and supported causes. For me they represent a high degree of idealism and personal commitment to civic responsibility.



Six days before his death, he wrote this letter to Canadians. I have chosen to post a few excerpts which I found to be quite meaningful to me. I hope cancer patients and survivors, as well as young adults find it inspiring. Below are a few excerpts from his letter. Click here to read the whole thing.

I cried a few times today, saddened by this sudden loss and reading these words. One of the things I find most touching about his words are that he first addresses cancer patients and survivors. In his last moments, he addresses us and remembers us. He encourages us to "live our life" and "cherish every moment" and not to lose hope.

I send my condolences to Olivia Chow and his family. May he rest in peace.

There will be a commemoration for Jack Layton at Toronto City Hall today (August 22, 2011) from 4:00-7:00pm today. There are also porchlights on tonight for Jack Layton.



To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer.


To young Canadians: All my life I have worked to make things better. Hope and optimism have defined my political career, and I continue to be hopeful and optimistic about Canada. Young people have been a great source of inspiration for me. I have met and talked with so many of you about your dreams, your frustrations, and your ideas for change. More and more, you are engaging in politics because you want to change things for the better. Many of you have placed your trust in our party. As my time in political life draws to a close I want to share with you my belief in your power to change this country and this world. There are great challenges before you, from the overwhelming nature of climate change to the unfairness of an economy that excludes so many from our collective wealth, and the changes necessary to build a more inclusive and generous Canada. I believe in you. Your energy, your vision, your passion for justice are exactly what this country needs today. You need to be at the heart of our economy, our political life, and our plans for the present and the future.

I Cancervivor

Over the last two weeks, I feel like I have remained relatively quiet about my cancer survivorship. As I mentioned in Cancer Survivor Playlist #1, I needed some time to reflect on this important period of my journey. I still continue to reflect... I do continue to write and post about other topics however I needed some time to reflect specifically on being a cancer survivor is quite different. I think that the songs on my Cancer Survivor Playlist #1 express some of my feelings best. Gratitude, pride, relief, blessed, strong, bold, anxious, excited, scared... I felt these things and more.

My therapist asked me what is it feel like to be a cancer survivor? I feel like I have been given a second chance at life. Although I know that papillary thyroid cancer has a very high survival rate, I still feel greatly affected by this life experience. I was always aware of my own mortality, or so I thought, and now I'm even more aware and greatly appreciative of each day and every one and every experience. I have a new sense that there is a brevity to life and that each moment should not be taken for granted. I feel a sense of urgency to accomplish my dreams and not to put things off until tomorrow. I feel like I faced death, or at least had a touch of it, which caused me to love my life even more.



On Saturday, July 23rd, when I received the news that R&B singer Amy Winehouse died, I thought it was sad. However the very next day, again after watching clips of her last concert in Sarajevo, I became quite upset. This twenty-seven year young woman was visibly dying and suffering from her illnesses and addictions and not getting the help she needed. I had a hard time watching it. I felt disappointed and disgusted that somehow I became a spectator to her deterioration. I wondered why no one intervened or stopped the concert. I feel she may have been alive if she got the help she needed.

On Tuesday, July 19th, I learned that I am cancer-free. I am alive because I received the help I needed. From spiritual help and guidance to prayers and faith, from cancer support centres, workshops, and classes, from my physicians, counsellors, and surgeons, from family, friends, and strangers,... I am truly blessed. I had a community of interventions at various levels. I also love and value myself enough to seek this help.

As a result, I do not want to waste any time. It is so important to me that I truly live life and pursue my dreams. The Country song by Tim McGraw, Live Like You Were Dying, comes close to summing up my feelings. Changed is my workaholic approach to tackling obstacles and goals. That workaholism does not help me. However, I will use my driven, tenacious, ambitious, and passionate nature to nurture myself. I have learned the importance of being kind to myself, rest, relaxation, restoration, and reflection. Achieving goals means nothing, if I do not care for the most important person-- and that's me. When I love me and care for me best, I can then help others better.

Like some thyroid cancer and other survivors, I felt some guilt at different times for having a cancer experience that did not involve such challenges as going through bouts of chemotherapy, mastectomy (removal of breast), hairloss, infertility, paralysis, extended hospitalizations, expensive and complex surgeries, life-saving treatments that could also kill, excruciating pain, and other side effects. However I continue to meet cancer survivors and read books which teach me a lot about these types of experiences. For example, Crazy Sexy Cancer author Kris Carr has been diagnosed with a stage 4 inoperable cancer but did not have to undergo surgery, chemotherapy or radiation. While Jim Bedard, author of Lotus in the Fire: The healing power of Zen, went through a very risky and lengthy treatment program which involved pain, transfusions, bone marrow transplant, numerous radiation and chemotherapy programs, and surgeries. In Everything Changes and other books, I learn that some cancer patients have recurrences or even die while in treatment.

Despite this, I have decided not to rank cancers. There are hundreds of cancers in the world so of course our experiences and treatments with it will all be different. The impact that this disease can have on one's life is devastating. I also become very frustrated when mostly older people have said to me that you got the "good cancer" or the "easy one" or "you're young". Isn't that terrible? These are the types of comments which make it harder for thyroid cancer survivors to speak up about the life-changing impact that this disease can have on their lives. I have received e-mails from readers and met thyroid cancer patients who are SCARED, TERRIFIED about what is to come. Thyroid cancers can have their own complications too. Many survivors come from cultures or families of origin in which it is not encouraged to discuss cancer or sickness.

Cancer is a beast! And I wish very much to end cancer so no one else would have to suffer in these ways. But cancer also can be a teacher if you let it. Kris Carr calls cancer her guru. Sickness, death, and suffering are all part of the human existence. It is inevitable. Having had cancer is kind of like getting a dose of all these things. So be it. Axé! Now God let me learn from this experience.

I decided to create a list (I love lists) and I changed the name for copyright purposes, calling it Funky Sexy Manifesto or my Survivor Resolutions. I was inspired by a young woman survivor I met (she was my roommate) who created a blog called 100 Cancer Resolutions. It is her "record of my commitment to doing everything I took for granted before my diagnosis". She reflects on each one. I loved this idea so much that I created my own list. (So far I have about 31 resolutions.)

Some cancer survivors and patients express that they want their life to return to normal after treatment. Some survivors do not change their routines, work through diagnosis by choice or by obligation, and look at cancer as a "blip" in their plans. How each survivor looks at their experience is a totally individual thing and there is no right or wrong way. I don't want a normal or "my normal" life. I seek a "new normal". My life will never be the same thanks to this experience with cancer and I wish to live better for it.

So I am embarking on a life as a cancer survivor or a Thry'vor. Carpe diem!!!

Nature Walking 1

Created by the Father by Dennis Brown

After writing about Mortality, I decided to post something uplifting and inspirational. I have some beautiful photos that I took while spending moments at Edward Gardens in Toronto. This is one of Toronto's most beautiful places. I saw a lot of beauty that day. This song Created by the Father reminds me of being fully appreciative of nature around us.


The goose family.


There are Mama Goose, Papa Goose, and all the baby geese.




Meet the other residents of the park: Ms. Green, the glowworm


Mr. Spiky, the caterpillar


Ms. Kwok, the duck


E Signorina Farfalla (the butterfly)


Lovely flowers


And a waterfall.

Mortality and Vitality

Mortality is a subject that I have not thought much about during this cancer journey. When I first was diagnosed with thyroid cancer, I did not think about death. Perhaps, I put it out of my mind. I tried to focus on other stuff. I remember at Christmas feeling the need to buy the nicest presents for my family members and I totally blew my budget. I felt this compulsion to give them the nicest gifts because, "I didn't know what would happen after my surgery..." At that time, I couldn't see beyond the surgery. I had never had a surgery before and so the idea of surgery terrified me. Now that I have had surgery and radiation and hopefully, nearing the end of cancer treatment, I have been thinking about mortality. It's come up a few times. Mortality is something that we humans face each day. However, some of us don't think about the fact that we will die one day. I know that mortality didn't become a thought again for me until the last few weeks. Despite all the things that I have gone through with my cancer treatment, I am still alive. I still live. I defy the odds that although there was this malignant thing growing in my body, I choose life and I live. In some ways, cancer is a gift for me especially at such a young age. Cancer forced me to soberly look at my life so I began to assess whether I was pleased with it. I was happy to know that I am satisfied with my professional accomplishments. Now that I am looking forward on the other side of my diagnosis (and surgery and radiation), there is so much that I want to do, feel, and be even though it will all come to an end one day, as it will for all of us and we don't know when that will be. For a young person to get cancer, it is like you are being given a serious reality check that you are not immortal. I didn't have to wait until my retirement, looking at my grandchildren or senior years to learn this, but instead during my early thirties. And although thyroid cancer has a 95-99% chance of recovery, you become aware that it, life, can all end one day. Thankfully, I have been given an early "wake up call" that I have only one life to live and I need to make the most of it. So in the face of mortality, I have life. I have vitality on my side and life is temporary. I am reminded of this during my Cancer Exercise group. Today is my second day and I am appreciating it. The first session helped me to feel more confidence in my ability to do physical activity again and that it can be this easy and manageable to get into shape again. I don't have to be so hard on myself. Although I ran a half-marathon (21 km) two years ago, I still can do that again one day but for now I am taking it slow. And today, I felt that I could begin to trust my body again that it will do what it is supposed to do, that my limbs and my heart are doing what they are meant to do. My body still works. As I look around at the other cancer patients and survivors completing their exercise programs, I feel like they are expressing victories over death, laughing in the face of cancer. Despite their mortality, they are living vitally and I am inspired. So I have attached this photograph of my feet standing on a trampoline. My favourite thing to do in the whole exercise space is to jump on this trampoline and feel the vitality in my legs launch me into the air and then back down to the surface. I am vital! I am alive!