Saturday, November 26, 2011

Cancerversary of My Diagnosis November 19th

Happy Movember!

On November 19th, 2010, I went to a follow-up appointment with my GP (general physician) to find out my biopsy (fine needle aspiration) results. She told me the results were not what we had hoped for and that I had papillary thyroid cancer, a disease that I had never heard of. She told me that if there was any cancer to have, this would be the one. She told me that I would need to have a surgery, a total thyroidectomy (TT). This all sounded a bit surreal. I cried a bit and then proceeded to inform my partner and close family members. One chapter of my life had ended (BC- before cancer) and a new one had begun (AD- after diagnosis).

Tony! Toni! Toné! - Anniversary (I miss TTT. When will they make another album?)

On November 19th, 2011, I had my cancerversary. I was not sure if the cancerversary was supposed to be your date of diagnosis or the date that you are deemed "in remission". I decided to look up online and came across a website called Shop Cancerversary. They describe a cancerversary as "any day you want to mark your journey through cancer." I decided that November 19th would be my cancerversary since so much changed for me that day in 2010. Maybe as time goes on, other significant dates in my healing journey will become cancerversaries too.

I decided to reach out to my young adult survivor communities to find out how and what do they use to acknowledge their cancerversary. I asked:

Tomorrow, November 19th is my one year cancerversary. (1 year from date of diagnosis.) I'm feeling a bit conflicted. Is this an anniversary to celebrate? Acknowledge? Grieve? Pause for reflective moments of silence? Survivors, how do you acknowledge your cancerversary?

This is what they told me:

- Aknowledge and thank those who have surrounded me. But also do something positive with my day because I can (Meghan)

- I don't celebrate my diagnosis anniversary..but I think its a great idea and a milestone for sure. I do celebrate the day I got discharged from hospital after my surgeries, and I also celebrate the day I finished radiation :) (Nicole)

- I make my husband take me out not necessarily to celebrate but to prove to myself how strong I was to overcome such obstacles! (Heather)

- Why can't it be a time for all of those? For me, there are usually a mixture of these feelings. Its a nostaligic time for sure but also a time for celebration! (Stephanie)

- Mine passed three times and each has had different emotions. October 28th 2009 was so surreal to actually accept that my life was convoluted with medication, side effects and hospital visits. 2010 was full of resentment and frustration at my whole situation not changing. And finally 2011 was full of pride and gratitude for my entire journey and how far I had come with the decisions I made. To give you an answer would realistically be impossible. How you feel tomorrow will be genuine and something you, us, or anyone else can't fore see. Regardless of what answer you get here, you'll know in your heart tomorrow when you feel it. What ever that feeling may be I'll congratulate you for reaching your mile stone. It is something to acknowledge. (Ray)

- To be honest, I didn't even think about the 1 year mark of diagnosis until you just pointed it out. Once I finished treatment I only thought about the day that I completed treatment and anniversaries of that day. I guess it is a similar idea and usually there are moments of reflection and acknowledgement and I make sure to take the day to do something that makes me happy and helps me remember why I'm so thankful to be here. (Alanna)

- I went from the date of diagnosis. I celebrated with family and friends but also knew that there was still a long road ahead. Small victory til the big one hit - five years! Congrats and as you said it is different for everyone! (Laurie)

- I think we celebrate or reflect on the moments that effected our lives and the changes they brought, be they positive or not. If you have some victory, praise it, some loss, mourn it, some gifts, cherish them, some anxiety, explore it. The dates to you will not be the dates of another, just as our cancers are all different, so are our stories and pivotal moments. Acknowledge the days, moments, achievements you want/need to. And if you need support, we're just a click away (Julie)

- It is so normal to have mixed feelings on your anniversary date! It has been almost 12 years for me and my thoughts are all over the place on that day! One thing I started doing was every year on my cancerversary I write myself a letter. I write down my thoughts, feelings, fears and triumphs and just put them away in a special box. I like to think of it as my own little personal tribute, and in the times I'm really feeling down, I break one out and am reminded of my own strength and the things I've made it through before!! I should also add that I usually try to treat myself to a facial, take my self out to lunch, buy a new CD and hold my own dance party!! (Julie)

- For a few years, on the evening of my follow-up test, I would organize a Butterfly Soiree. Everyone was encouraged to wear purple and bring chocolate and we had live music and celebrated. One year we accidentally also had a fire, but turned out the fire chief was also a cancer survivor so he came in and got some photos with us after the fire was under control! Of course! And just to put it in context. I didn't start soiree-ing for years. I got diagnosed right before Christmas and actually spent the first few years of my cancerversary on that horrible low-iodine diet (prepping for annual follow-up) while everyone munched on delicious holiday food. Needless to say, I was pretty bummed. You're awesome at being aware of your feelings and accepting wherever you're at, which I really admire. Just wanted to throw it out there that the desire to celebrate the cancerversary will probably just happen naturally over time. When I organized my first one, it was on the same night of the day I got my follow-up results and I was so worried that I would get bad news and then have to deal with a bunch of people at my house. But I invited only people I really cared about and figured if I had a recurrence, they would be the perfect source of comfort (and chocolate). : ) (Shali)

- A day to mark however feels most appropriate to you. (Tal)

- I usually forget it. And there's really no single date to mark it -- there's the day I found out something was wrong and it was probably really bad, the day I found out that is almost definitely ovarian cancer, and the day two months later when I had surgery and found out it WAS cancer. Then there was my recurrence, which adds it's own list of dates. I generally don't acknowledge these days because I really don't want to think of cancer as being this super significant part of my life. It's all part of a continuum and shouldn't be marked as more important or worthy of remembering than other days in my life. On the other hand, I am not someone who places much value on anniversaries in general. This may not describe you. I have to agree with Tal, mark it however feels most appropriate and true to you and the significance you place on this experience/day. (Alicia)

- my canceriversary was November 11th (remembrance day, how crazy is that!) I didn't have a lot of time to acknowledge it on the day of, but I'm planning to celebrate this weekend at Breast Fest! For me, this past year has certainly been a challenge, but I've definitely grown and learned a lot as well. Getting through treatment was also a tremendous milestone for me, so I'm happy to celebrate that! good luck! (Linda)

- grieve, reflective moments of silence part of mine falls on my birthday and I know longer celebrate that. its not a day i feel like partying but rather taking stock of my journey, where its led me and where i still have to go (Josh)

- Hi all. I have been conflicted over the years, and this year, my five year, I have celebrated my surgery date (went out with friends), diagnosis date (got myself something to commemorate - a purse from the trip to Ottawa ), and my end of chemo date (got myself a spa gift certificate that I am using today; will be going out for meals with friends; speaking at the Cancer Community Forum; as well as beginning a new endeavor as Section Editor for an oncology website). Every year I also feel survivor guilt. There's such mix of things I would have to echo everyone's statement here. How did it go? (Jen)

So how did it go? I had not had a clear sense of what I was going to feel on November 19th before it started. I actually took my eleven year old car to get serviced. Unfortunately, $ 345 repair later (plus more roters that need to be replaced), I asked myself, "What am I doing at the garage on this day of all days?" I decided to meet up with some young adult cancer survivors for tea and conversation after the Young Adult panel at Breast Fest, an annual film festival organized by Rethink Breast Cancer. After this gathering, I think all of my emotions hit me at once. I was supposed to meet some of my friends for dinner but the details got mixed up along with my feelings. I started crying... a lot. I couldn't stop. I decided it was time to go home. Thankfully, when my friends got the sense that I was quite upset (and incoherent), they announced that they were coming over. I tried to protest, I didn't want to trouble them but being the good friends they are, they came over.

I tried to explain why I felt the way I did. It was nothing and everything. I felt like I was grieving but what was I grieving for? I am alive. I survived cancer. I emerged from the battle with scars to show for it. I should have been celebrating, right? No. I didn't feel like celebrating and I was quite puzzled by that.

I'm not your Superwoman.

Karyn White - Superwoman (Whatever happened to Karyn White? I loved her songs.)

The closest way I can come to explaining my feelings is to describe that I am grieving. When people grieve and mourn, it is typically because they lost someone or something near and dear to them. For me, it was my youthful ignorance (of living forever) but most importantly it was the Superwoman in whom I invested so much of my personality. I saw myself as the fearsome, pioneering warrior with a tenacious, ambitious spirit. I stretched myself to the limit and as one friend put it, I accomplished more before the age of thirty than most people do in their whole lives. If I had to go weeks on end, depriving myself of sleep and self-care in order to accomplish a task, I considered it done! There was very little that I limited myself to. I did it all. Even today, I look back in awe wondering how I managed to found and run a nationally touring film festival (6151 miles or 3822 kilometres from each Canadian coast) while attending teacher's college and graduate school and maintain a long distance relationship. Or teach at a new highly demanding school while being a patient advocate for a family member and taking courses at night. Or while I was in high school, be an honour roll student while being involved with several extra-curricular activities (band, newspaper, student council, etc.) at school and Classical and jazz music studies outside of school. Or get three university degrees including a Master's by the age of 27. Living this way was my normal and it isn't any more.

I cried because I realized that cancer has changed me physically, emotionally, and spiritually.

My energy level since my surgery has not returned to what it used to be and I require daily naps to function normally. I also have to organize my day with less on my to-do list and a lot more downtime. I returned to teaching in September this year after eight months off but after much contemplation, reflection, and medical visits, I made the difficult decision to teach part-time. From a financial standpoint, this decision is insane since it means cutting my salary in half. From a health and well-being perspective, the decision makes total sense.

Another change for me has been my perspective on life and time. I wish to "make the rest of my life, the best of my life" (I am not sure who said that). So my priorities have shifted in ways I have not foreseen. My self-care has taken centre stage along with my writing so other things have had to "give way" and allow room for these factors. The result is a more balanced and authentic way of living but the change ain't easy. Nevertheless, I have an excellent support system and I have increasingly relied on my faith. Plus, I am excited at the cool opportunities, people, and possibilities that keep emerging. I am learning to "let go and let God".

So I am trying to embrace the new Blue Butterfly AD and it is taking time. I thank all of the survivors who shared and continue to share their wisdom, love, kind words, resources, and listening ears along the journey. I am not alone.

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