Thyroid Cancer Patient Forum June 14

Thyroid Cancer: Navigating Support and Education Resources for Patients

Time Tuesday, June 14 · 11:00am - 12:30pm

Location
WOMEN’S COLLEGE HOSPITAL, Toronto, ON
76 Grenville Street, Labyrinth Room (main floor)
Toronto ON M5S 1B2

Facilitator: Dr. Catherine M. Kelly

Dr. Catherine M. Kelly will discuss the resources available to thyroid cancer patients as they face physical and emotional challenges during their cancer journey. Topics will include thyroid hormone replacement, radio-active iodine, surgery options, the low iodine diet, and emotional support needs.

Dr. Catherine Kelly, MD, FRCPC is a Clinical Educator and an Associate Professor of Medicine at the University of Toronto. She is the Division Director of Endocrinology at Women’s College Hospital.

For more information, visit the Wellspring website.

Fatigue and Fire

This past week has been a challenging one. At no other time during my recovery have I felt more tired and worn out. Each day, I have a nap and today I had two naps. Each nap lasts about 2-3 hours. I'm in touch again with my inner baby bear. Each day I feel progressively more and more tired and it is feeling more difficult to do stuff. I am learning a lot about slowing down and not being too hard on myself. It's really hard because sometimes it feels like life is passing me by while I sleep. I don't like this feeling and I want to be a part of all that is going on, but my body is telling me otherwise and I am learning to listen to it more. The body is very intelligent, how soon I forget that.

So I have given myself even more permission to slow down and do less. Even a day filled with appointments and support groups will get exhausting and be counterproductive. I really need to be right now. I am consciously slowing down even more. This healing will take time.

Yesterday, I went to the Patient Forum presented by Thyroid Cancer Canada in Burlington. Burlington is about 1 hour away from Toronto and above all days, this was the day I forgot to take my Eltroxin. (Eltroxin is a thyroid hormone pill.) Since I had a total thyroidectomy, I will be dependent on a daily dose of this pill for the rest of my life. So the lack of Eltroxin did not help my fatigue at all. I have learned that I will need to keep a back-up supply of Eltroxin in my purse for instances like these.

The attendees included supporters, patients, and survivors. The patients and survivors ranged from the very recent patients who still had their stitches and stiff necks to veterans who had been beyond their five year mark. I was amazed with how many other young women were there. Many of the folks in the room were older than 50 but there was still a sizeable young population including a few men.

The first speaker was Dr. Meera Luthra, an endocrinolgist and assistant professor in Hamilton who presented "An Overview of the Treatment and Follow-up of Thyroid Cancer." I got a better understanding of how to interpret my blood test results in regards to the TSH, T3, and T4 levels. I also learned that the recurrence rate of thyroid cancer is 30% at 30 years. I was also reminded that thyroid cancer would require lifelong surveillance so that no matter where I move or where I live, I will need to have my Tg checked regularly.

My favourite part of the presentation was by Shalimar Manuel, BScHE, MA. Shalimar is a thyroid cancer survivor and I first learned about her in this short video.



I also read Shalimar's Butterfly Tale in the Young Adult Cancer Canada Profile section here. Shali had attended the same retreat that I did twice and also as a presenter.

Shali has not only chosen to share her thyroid cancer experience, she has decided to focus her graduate studies on it. She completed her Master of Arts degree at Dalhousie University entitled, "Surviving=Thriving: Exploring the impact of thyroid cancer on young women's quality of life." Her two research questions were:

1. How has the experience of having well-differentiated thyroid cancer impacted young women's perceptions of their quality of life?

2. From a health promotion perspective, what, if any, programs and services are needed to increase support for young adult women thyroid cancer survivors and their loved ones?

This information is so necessary, especially given that thyroid cancer has the fastest growing rate of occurence and is the # 5 cancer in women and the #1 cancer in young women.

Shalimar summarizes her findings under the overarching theme that: Thyroid cancer is biographically disruptive. Under this theme, she has identified 3 key themes:

1) Disruption of Taken-for-Granted Assumptions and Behaviours
- Lost Sense of invincibility
- Lost Trust in Body
- Lost Sense of Control
- Changes to Faith
- Increased Appreciation

2) Lost Sense of Normalcy
- Feeling Different from Pre-Cancer Selves
- Feeling Stigmatized and Alienated
- Changes in Social Roles and Relationships
- Changes to Career Paths
- Struggling to Regain a Sense of Normalcy

3) Need for Increased Psychosocial Support
- Gaps in Emotional Support
- Gaps in Informational Support
- Gaps in Instrumental Support

I think that this above list (or parts of it) could be incorporated within the standard lists of thyroid cancer side effects and symptoms. These standard lists do not incorporate the psychosocial impact of having a thyroid cancer diagnosis. The emphasis for most endocrinologists seems to be that this is the "best cancer" and that it has a 95-99% cure rate. Unfortunately, this causes a huge oversight that the impact of the disease has on the patient including the length of time for recovery as well as the interruption it causes to daily functions.

The thing that Shali shared which mattered most to me is that the healing does take time. Many of the thyroid patients experienced increased fatigue even at the year mark. They experienced tiredness even when their endos (endocrinologists) were saying that it wasn't because of their operation. Plus, some of them wondered whether or not they would feel normal again. Currently, I am experiencing all of these things. I was happy to hear that I was not the only one experiencing this high level of fatigue, that it is normal, and that I will eventually come out of it. Things will eventually normalize and balance out. That was such a relief because I was being hard on myself about my fatigue.

I asked Shali if her thesis was on the internet but she said that she could send it to me through e-mail. If you would like to see it, please e-mail me at: bluebutterflyblog33@gmail.com and I will send it to you.
Shali gave me a copy and I look forward to reading it.

The conference also allowed me, for the first time, to connect with so many thyroid cancer patients and survivors within my age group. Just like the Young Adult Cancer Canada Retreat Yourself in Newfoundland this year, I was meeting people again who "got it". Often, the first thing we discussed were our scars and how we have treated them. Thyroid cancer scars can be quite visible. Unless a patient wears a scarf or turtle neck, the scar can be quite detectable. According to many, they said Meaty (my scar) looked good for having been operated on January 26th this year. One woman had an almost invisible scar from her February surgery. (I looked on in envy.) She said it was Bio-Oil and Vitamin E. A few other survivors sang the praises of Bio-Oil. I've got to find me some of this Bio-Oil. We talked about how the surgery impacted our singing and speaking voices. One patient said her laryngeal nerve was damaged so ultimately her vocal chord was partially paralyzed. I am still mourning the change in my voice a bit. My voice is still recovering. On another note, I even met a woman who had the same surgeon as me. We expressed difficulties in feeling understood by our endos.

A few survivors had or were preparing to have a second surgery or multiple surgeries. (Having gone through it once already, I would find that so terrifying now. Luckily, my cancer was detected last fall with the fine needle biopsy.) Some of the women's cancers were not detected until after a partial lobectomy (or hemi-thyroidectomy) surgery so they would need to have a second surgery to remove the entire thyroid. I think I am blessed that I had a skilled surgeon and all my tests revealed the cancer early so I only had the one surgery. My surgery was relatively simple (aside from the lymph node and 3 of 4 parathyroid removal) compared to others who had neck dissections to remove larger tumours (greater than 4 centimetres) and numerous lymph nodes (greater than 20). I commend these survivors for their optimism and positivity. We have all had different challenges with this and shared strategies to cope.

Attending this annual event really helped me to gain an appreciation for the advocacy required to get public attention for thyroid cancer. It is hard to believe that thyroid cancer is occurring more than any other form of cancer and is the number one cancer in young women, yet I and most of my peers know very little about it. I met two survivors and patients who came up to me and said they read this blog. I felt great when I heard this and it reminded me of why I created this blog and how important it is to I share my own story, information, and connect with other survivors.

As I continue to recover, I am learning so much. Physically, I require a lot of rest and focus on my self-care but psychosocially, writing is becoming more and more a medium for me to connect with others. I am finding a lot of things difficult to do these days. Thankfully, I have still been able to write through this process.

I end with Shali's words of advice for Moving forward:
1. Be present and know it's okay to struggle.
2. Let go of "should have's" and "supposed to's".
3. Seek support if needed.
4. Self-care.
5. Self-advocate.

These are great words of advice for anyone not just thyroid cancer patients. Couldn't have been said any better!

Blue Butterfly E-mail Address

I have created a Blue Butterfly e-mail address. I would love to hear from you if you wish to share your Butterfly Tale, photos, or even if you wish to correspond less publicly than the comment area. Please connect with me at:

Facebook: http://www.facebook.com/pages/Blue-Butterfly/126428007434121

bluebutterflyblog33@gmail.com

Twitter: @blubutterflygrl

THYROID CANCER CANADA PATIENT FORUM MAY 28, 2011

THYROID CANCER CANADA

Patients Forum (morning)
Annual General Meeting (AGM) (afternoon)

Date: Saturday May 28, 2011
Time: Patients Forum 9:00 -12:00 am, AGM 1:00-4:00pm
Location: Burlington Arts Centre
1333 Lakeshore Road
Burlington, ON L7S 1A9
(exit the QEW at North Shore Blvd. E.)
Room: Shoreline/Rotary-Lakeside Room

Click here to see the flyer.

Wrapped In

I attended a workshop on how to tie head wraps held at Princess Margaret Hospital, a leading cancer care facility in Toronto. This workshop was delivered by Naza of For the People Canada. I had seen Naza with her t-shirt and headwrap displays at countless festivals in Toronto over the years, namely Afrofest. I always wanted to learn more ways to wrap my hair so when I was at Gilda's Club, another cancer support facility, and saw a pamphlet advertising the head wrap workshop, I knew I had to participate. When most people think of cancer, they associate it with hairloss. However this is not always the case. Patients who receive chemotherapy treatments often lose their hair. Some of these women cover it using wigs, hats, or other head garments. Cancer patients, like me, who receive radiation, may have hair thinning and very little hairloss. Regardless, hair wraps offer a beautiful headcovering alternative to express oneself culturally.

When I was there, I met Naza, an enthusiastic petite young East African-Canadian woman. There were a few other women who attended, almost all of whom were Caribbean-Canadians like myself. Besides the most obvious thing we shared in common (our skin colour), we also wore our hair (or until very recently) in dredlocks. At the workshop, I learned more about support activities for cancer patients and head wrap tying techniques. This workshop was free to cancer patients and I also got this free conscious head wrap too. (Free is the operative word here.) We also talked about the need for cancer advocacy and awareness in the African-Caribbean Canadian community since cancer is still a very taboo topic. We recognize that there are people in the Black community who have cancer but it remains hidden and nobody talks about it. We recognize that needs to change especially since a cancer diagnosis can be so isolating (which does not help the healing process) and early detection is the best prevention.

STYLE ONE




STYLE TWO

You Know You Want Some (Vegan Photo Album 2)

In April 2011, I posted my first vegan photo album Living La Vega(n) Loca showcasing a cornucopia of dairy-, egg-, and meat-free scrumptious goodness. I had fun cooking those dishes and discovering a wide variety of flavour. My March-introduction to veganism was filled with tantalizing dishes such as Jerk Pizza, Jamaican Meat-free Patties, and Veggie Tempura. I decided to stick with veganism the more I became inspired and informed about animal rights, the preventive cancer benefits of plant-based diets, and ecological and ethical benefits. It felt like a good decision which I still stand by.

I enjoyed preparing every meal for the first Vegan photo album. And even before I started this blog, I began to photograph the foods I prepared or encountered. I admire beautiful food. The colours, textures, tastes, and aromas... I even love the atmosphere socially of when food is consumed. And because food is unlike art, meant to be devoured hence temporary, I take pictures to preserve their memories making them all the more precious. Some of my friends saw the blog and remarked on the tasty looks of these dishes. My fiance enjoys eating most of the dishes and being my test guinea pig. He says that I'm becoming quite the vegan chef. (I love it when he says this.)

I enjoy sharing food that I have prepared with other people but I do not entertain often. A highlight for me this past year was organizing a Kwanzaa party for my students and their families where they had mostly organic and all vegan corn soup, cornbread, and sugar cookies which the children decorated with coloured icing, marshmallows, and chocolate chips. That day, I also watched my students try a new food for most of them, njera (an Ethiopian sourdough flatbread) with lentil stew. The children eagerly gobbled up this cultural vegan dish using their fingers to break the njera and sop it up. I continue to daydream of preparing and sharing these nutritious meals with other people and essentially feeding people. My foray in veganism has definitely increased my affection for real wholesome food and appreciation for organic farming, farmer's markets, food co-ops, sustainability and activism.

I also appreciate my ability to enjoy food a lot differently now. Recently, I had to go on the Low Iodine Diet (LID) and eliminate all iodine products which also includes any food that lists salt as an ingredient. This includes milk, dairy products, seaweed (e.g., kelp), tofu, canned foods and sauces, eggs, most breads, most desserts, fish, seafood, and many meats (that are injected with broth). Being vegan and eating LID while "going hypo" was extremely challenging. I had to prepare and freeze some meals so if I was at my worst from "going hypo", I would have the ease of reheating food. It was difficult to deal with the blandness of most LID foods. Even though, I was permitted to use Windsor coarse salt (since it was not iodized), I grew a distaste for some of having to prepare so many bean and lentil stews. (I have some of these frozen dishes still in my freezer.) Also, my ability to taste foods had been temporarily diminished due to the radiation treatment I received. My appetite is still mostly gone since my radiation so I am not getting a growling stomach or the feeling of hunger. However I still value and enjoy preparing, smelling, tasting, and eating delicious vegan stew.

Here is the second installment of my vegan photo album. You will notice that this time I have written a little bit about preparing these dishes.

Thai Pineapple Rice (to go) from Tropical Vegan Kitchen
Amazingly tasty and quick to prepare. This recipe tasted amazing even in this container. This meal has a simple list of ingredients which include green onions (which I took from sprouted onions), currants, grated carrot, and, of course, pineapple.



Curried Spinach and Peas in Coconut Milk over Basmati Rice from The Tropical Vegan Kitchen
A great way to use up a whole bag of spinach, too bad that it wilts so easily though. (I love spinach so much.) This dish has a great taste as the coconut milk makes it slightly creamy however the dish does not reheat well since the spinach really does shrink. Also, make sure you use brown jasmine rice. The white rice does not do this dish justice and is a lot less healthy.


Pumpkin Bread from The Kind Diet
This photo reminds one to never fill your loaf pan all the way to the top with batter. That's what I did, wishfully thinking that the batter would all fit, the loaf would not rise, and I'd have a perfect loaf. Nope! All that batter you see spilling over the edge continued during the entire baking process. I opened the oven every few minutes or so with a spoon to catch the run off batter and eat it. (Ugh! I at too much.) Even though this was my 2nd time round at baking this bread, I learned a new lesson. This was my second go at baking this bread. The first time in March, I was not sure if the soft pumpkin was cooked so I baked the bread for 3 hours!!! Needless to say, the crust did not char too much, but the center was very mushy and pumpkin-y. Second time round, I learned my lesson and only baked this loaf for one hour. Nevertheless, it is still very mushy in the middle which is because it is so rich with pumpkin-y goodness. I also used different types of carob chips-- the "melty" kind.



Tropical Whole Grain Muffins from The Vegan Kitchen
When was the last time you ever had coconut, mango, kiwifruit, bananas, and pineapple in a muffin? Well then you've got to try these totally tasty, mouthwatering muffins. My fiance loved these. The muffins were totally moist and slightly grainy. I used spelt flour as well as cornmeal to give it a nice gritty texture. They froze really well and were great for breakfast or snack.



Sweet Potato and Black Bean Quesadillas with Kiwifruit Salsa and Tomato Guacamole both from The Vegan Kitchen
This was my very first time making quesadillas and what an amazing filling of sweet potato and black beans. This meal was so light and the kiwifruit salsa so sweet and spicy. This guacamole recipe was originally written for tomatillo which is a type of fruit. I couldn't get them, so I made it with tomato. The first time I made this guacamole was a charm. My fiance loved this guacamole the first time. The texture and ripeness of the avocadoes needs to be just right. The second time I made it, the onions were to largely cut and dominated the dish so be extra careful. Chop the onions finely.


Alicia's Magical Healing Soup from The Kind Diet
This soup was very quick to prepare and very simple. I also added some of my own touches including bok choy. My fiance and I had this soup when we were both a little under the weather. There is Chinese radish (daikon) in this soup which is this big huge white carrot of a looking vegetable. It has a bit of a distinct smell but among the other ingredients like watercress and ginger, it toned down. This magical soup really is filled with anti-cancer goodness such as mushrooms, leeks, and broccoli. Yes, that's a spring roll on the side but I did not make that from scratch. The meal was amazing though.


Bengali-Style Black-Eyed Peas with Mushroom over Basmati Rice from The Tropical Vegan Kitchen
This dish was very easy to prepare. I love black-eyed peas and it is always nice to try them another way. I don't know how authentic this dish is but having curried black-eyed peas worked. I use brown basmati rice to make sure I am getting more nutrients and fibre. Very tasty indeed.


Roasted Vegetables in African Peanut Sauce with Fufu from The Tropical Vegan Kitchen
This is the food photographed on my fiance's plate. It just looked more appetizing on his plate than on my plate. Fufu is a West African staple food made from a type of flour. For this recipe, I used cocoyam fufu flour. The texture of fufu is similar to mashed potatoes and can be eaten with fingers (traditional) or with a fork. (I did both.) The stew is amazing. The roasted vegetables added a touch of sweetness to thick, spicy peanuty stew. I had leftover stew that week and ate it with toast. Very yummy!


Aussie-Style Fettuccine with Basil-Macadamia Pesto from The Tropical Vegan Kitchen
This was my very first dish cooked from The Tropical Vegan Kitchen cookbook which I borrowed from the public library. This dish was so light, fresh, and tasty. This was also my first pesto and it did not want for parmesan cheese. I didn't even use fake, soy "parmesan cheese". There was lots of basil though. The macadamia nuts are a little pricey and need to be kept refrigerated but were alright in this recipe.


Black Bean and Avocado Enchiladas with Chipotle Sauce from The Tropical Vegan Kitchen
Amazing dish from this gem of a cookbook. Like the fetuccine and quesadillas, this dish did not want for cheese. In fact, the spices and the amazing chipotle sauce made up for that. Since I went to the local gringo supermarket to purchase the ingredients for this dish, I could not find chipotle sauce so I bought Herdez chipotle salsa instead. (Salsameans sauce in Spanish.) So I guess it was close enough.


What a beauty! Love me some steamed spinach.

Chocolate Avocado Mousse from the internet
This recipe sounded amazing and the finished product was pretty tasty. Paired with some fresh strawberries and you have some amazing stuff.

Just look at it.

But this is what it started as. First, you combine cocoa powder with avocadoes. Make sure you use ripe avocadoes, very ripe ones, or else you'd spend half the time like my fiance and I chipping at it and chopping it up in the blender. Plus, the mousse was mostly mousse but had tiny chunks of unripe avocado in it. Nevertheless, you have yourself healthy monounsaturated fats and vitamins and minerals. Plus, it is made with agave nectar which is anti-inflammatory and lowers your glycemic index which is both anti-cancer and anti-diabetes. That's power, baby!


Thai Coconut-Noodle Soup with Lemongrass from The Tropical Vegan Kitchen
This soup was very heavy on the veggies and not so much the soup. I expected more of a taste reminiscent of what I had at Thai restaurants. However there were tastes of slight lemons and ginger. I am not too much a fan of broccoli but I do like it cooked up in soup like this. I used organic red jasmine rice vermicelli which meant the noodles were heavier than the white vermicelli. My fiance really liked this soup with red spicy Thai Sriracha sauce. Lemongrass is a straight leaf-type of plant. It reminds me of bamboo. I didn't need to buy this since my mother had given me a bag full of Jamaican lemongrass called "fever grass". Fever grass is the same as Thai lemongrass and is used in Jamaica locally for healing. She said that it would help with the cancer.


Pad Thai Vegetarian Noodles from The Tropical Vegan Kitchen
I love Thai food. The perfect combinations of sweet and spicy are unmatched in other cuisines. I like this recipe because it is vegetarian which means it does not use fish sauce (which is typically used in pad thai recipes). I am allergic to fish anyway and vegan so the sauce is made with other things. I used rice fetuccine noodles which lie flat like pad thai noodles. However, if I were to make this dish again, I would soak the noodles in boiling water a lot longer. Let's say that some noodles were very dente (crunchy) but the dish was still tasty.

Topped with peanuts!


Ackee Scramble from Caribbean Vegan
I love ackee! With ackee and saltfish being Jamaica's national dish, my mother made it often for Christmas morning and sometimes at other times. Being allergic to fish, I got my ackee fish-free. My mother would fry it and cook it with onions and black pepper, but I lost out on the full picture. Not any more! This ackee scramble is vegan which means I can eat it. And instead of fish, I use my own homemade vegan jerk sausages. I like to use cherry tomatoes and there is one piece of scotch bonnet pepper to give the ackee some kick. Also, I topped it all of with crumbled kelp (seaweed) to add more anti-cancer goodness. Ackee is a fruit which was brought over to Jamaica from West Africa during the slave trade. It grows and is poisonous until the fruit is ripe and has opened up to reveal black seeds and a yellow flesh. It looks like scrambled eggs and some say it tastes like a combination of scrambled egg and custard. I don't think so. I just think it tastes good. I think you either like ackee, or you don't. (My fiance doesn't.) You can buy ackee in a tin can in Caribbean foodstores. In Canada, it usually costs about $ 6 but in the U.S. it costs twice as much. This Jamaican breakfast can be served with toast.


And la Piece de la Resistance: Vegan Strawberry-Rhubarb Pie from the internet
In my Good Food Box, I received some rhubarb. Rhubarb is a strange "fruit". It is technically a vegetable with a tart taste. It is also supposed to have some healing properties. It looks like a red celery except the leaves are poisonous. I have never cooked or worked with a rhubarb before so I was extra cautious. I didn't understand this poison thing. But I figured that the grocers would not sell a poisonous food (like the ackee). My fiance suggested (actually begged me) to make a strawberry-rhubarb pie. I found this recipe here. I made this recipe over a few days. First I made the dough and left it wrapped in the refrigerator for two days, until I could get enough time to finish the pie. Then I rolled it out and spread it. It contains vodka which is supposed to keep it moist.

Then I washed and chopped about 5 cups each of organic rhubarb and strawberries. But then I left them to go to my support group.

By the time I got home, there was a lot of liquid that sunk to the bottom of the bowl, so I spooned out the fruit and placed it into the pie "shell". It was not a shell yet. It was pie crust dough pressed into the pan.

Then I rolled out the other piece of pie crust dough and placed it on top of the fruit. I folded the edges over and pressed it with water to the existing shell. Then I used this fork to create a seam.

Et voila! La tarte! Those slits you see were made before I baked it and sugar was sprinkled. The filling as you can see bubbled up and through the holes onto the pan. Some of it burned.

And the filling juice did that did not burn tasted just like red lollipops-- sweet with a little taste of tart. I drank this red lollipop juice by the spoonful. Mmmm.

I get to try the first piece.

Yum, yum, yum!

The Healing Journey

The Healing Journey: An active response to the crisis of cancer is a series of courses and workshops founded by Alastair Cunningham, O.C., PhD, CPsych. Dr. Cunningham was a researcher who had at first specialized in cancer but after his own diagnosis with cancer, then switched his focus to the psychosocial impact of this disease. I am currently taking the Healing Journey, Part 1 through a cancer support centre after it was recommended to me by a survivor. He explained that the course could help me figure out with some of the "now what?" that I was experiencing. I found the following diagrams in my Healing Journey Workbook to be helpful in understanding the impact of cancer.


This diagram helps to illustrate how one's life must change to hinder the growth of cancer. These changes can take the forms of such things as lifestyle, relationships, nutrition, self-care, and exercise. In the Part 1 of the course, we focus on meditation, relaxation, mental imagery, and stress management. All of these factors work towards hindering the growth of cancer.


This diagram is excellent as it shows how cancer impacts different aspects of one's life. It might be a little hard to see but the concentric circles, radiate from the centre as levels. These levels are: Body, Conscious mind, Deeper mind, Social, and Spiritual. Beyond the physical aspects one may experience with cancer (e.g., detection, diagnosis, surgery, chemotherapy, radiation, physical healing), there is a huge and much larger other part. The cancer sends ripple effects to everything else so one may question, reevaluate, contemplate, and reflect on these aspects of their lives much differently after the diagnosis and treatment.

I find this stuff fascinating. Besides the fact that I am actually going through it now, I love learning about it too. Another way of putting my Honour's Bachelor of Arts degree in Psychology to use, I guess. (Sometimes, I'm not too sure how to use this degree.)

Butterfly Tales

According to Louise Hay and Dr. Carolyn Myss, the thyroid is associated with the will, self-expression, and the dreams that one has for oneself. As I have started to reveal to others about my thyroid cancer experience through this blog, facebook, and support groups I belong to, some people have approached me and shared their own experiences with thyroid cancer and other diseases. Also, I have learned so much from others and I hope to inspire people with my own story. We can all learn from our experiences. Plus when I was first diagnosed, I desperately wished to meet or read about other people's thyroid cancer experiences and could not find any. So I decided to create this forum to share our stories, reflections, and thoughts. I call this series Butterfly Tales and will continue to add and update this post regularly. If you wish to add your own Butterfly Tale, please do so in the comments section. Or send me a message so that I can post it. I have written mine as an example. Yours doesn't have to be as long and you can alter it to meet your needs. You can also send a photo if you wish.

Questions
PHOTO
Name (first name only, nickname, or alias)
Gender
City/Province/State/Country
Current Age
Thyroid Cancer/Condition
Age when diagnosed with Thyroid cancer/condition/Disease
Did you know much about your thyroid condition/disease before your diagnosis?
How did you discover your condition? (e.g., felt lump, was sick, doctor's visit)
Were there any clues about your thyroid cancer/condition before the diagnosis?
How did you first feel when you were first diagnosed?
How did your loved ones react when you told them?
How was your condition treated? (e.g., surgery, medication) Were there complications?
Do you take medication for this condition? If yes, which ones?
What side-effects did you experience from your treatments?
Do you use alternative medication/treatments? If yes, which ones? (e.g., homeopathics)
What helped you to cope with your thyroid cancer/disease/illness? (e.g., television, yoga, staying busy)
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them?
Do thyroid cancer/diseases run in your family?
How has your thyroid cancer/condition impacted/changed your life?
What was the most challenging thing about your thyroid condition/cancer?
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others?
What is the latest update on your illness now?



BLUE BUTTERFLY
Name Blue Butterfly
Gender Female
City/Province/State/Country Toronto, Ontario, Canada
Current Age 33
Thyroid Cancer/Condition Papillary Thyroid Carcinoma, Stage 1
Age when diagnosed with Thyroid cancer 33
Did you know much about your thyroid condition/disease before your diagnosis? Not at all. I vaguely knew that Rod Stewart had it.
How did you discover your condition? I went for my annual check-up with my family doctor. She found a nodule. So she sent me to do an ultrasound which revealed four nodules. Then I did a fine needle biopsy two months later. (Very painful with no anaesthetic.) They did three biopsies on two nodules. One nodule was malignant (cancerous), the other had abnormal cells.
Were there any clues about your thyroid cancer/condition before the diagnosis?Yes but I didn't know it at the time. I've always had issues with getting tired really quickly or easily. If I went out with my friends or fiance, I would be the first one "out like a light". Going out late was very challenging. The chronic tiredness was checked with bloodtests and attributed to low iron. Also over the last year, I have been feeling a slight tightness in my throat when I swallowed and also my voice deepening slightly and getting more raspy. I thought this was all attributed to stress. Now, after searching on the internet, I learned that these were symptoms for thyroid cancer. After my diagnosis, as I went through my engagement photos, I found a picture in which some lumps were visible in my neck.
How did you feel when you were first diagnosed? A mix of things. After I did my fine needle biopsy, I started to have this "feeling" that I might have cancer. Call it intuition or what but as I read on the internet, I realized that 20% of biopsies come back as cancerous. (Some even have to be repeated. I prayed I wasn't in that group.)First, surprised since I did a lot of preventative things healthwise (e.g., healthy eating, exercise), cancer was not on my radar. I didn't know anyone my age (personally in my circle) who had cancer. (Although there were people who I used to go to high school or university with who did have testicular, brain, and melanoma.) I felt scared to have surgery since I never had before and I could not envision it. Honestly, a small part of me felt relieved that I would be forced to take time off and rest from my already busy schedule. I also didn't feel comfortable using the word cancer until about late March this year. I called it different things like carcinoma or malignancy. The word cancer and all things related actually scared me.
How did your loved ones react when you told them? My closest family reacted pretty calmly (or maybe they didn't show their emotions too much) as they focused on the positive side. (Although, one sister cried when I told her.) My fiance was naturally concerned but we tried to focus on the positive. The impact became more apparent (and real) as time went on. I did not tell very many people about it at the beginning. (Although, my fiance and sister told their circle so it was weird that their coworkers and friends knew about it months before some of mine did.) Most people were surprised because of my age being so young. Others showed concern in different ways but also focused on the positives (my age, catching it early, the success of recovery rate, etc). One person said she cried for three days. (I hadn't even cried that long for myself.)
How was your condition treated? Were there complications? Through surgery, thyroid hormones, and radioactive iodine ablation (RAI, I-131). Also during my surgery, my 3 parathyroid glands were removed. The remaining one was reimplanted so I also had transient hypocalcemia (calcium deficiency) for two months but that's better now. Also out of the 6 lymph nodes that were removed during surgery, 2 showed cancer which meant I would have to do radiation. Also, a small piece of thymus gland was removed for testing since it was so enlarged.
Do you take medication for this condition? If yes, which ones?Yes. First, I was taking Cytomel, Rocaltrol, and Calcium Carbonate (very high dose). Then I came off the last two when the hypocalcemia stopped. Then I was completely off everything to prepare for RAI. (I went "hypo" since there was no Thyrogen available.) Then on the third day of my radiation, I began Cytomel and Eltroxin. Now, I'm only on Eltroxin.
What side-effects did you experience from your treatments? They ranged. After surgery: I sounded like a frog who really needed water. My croaky voice was also shaky but now sounds more like my normal voice although, my singing voice has changed. It's a little deeper and there are certain songs and pitches that are still difficult to reach. I am told that this too may improve with time. In the area of the incision, I had no pain at all and did not need to take one painkiller after surgery. This was caused by numbness in my neck which, according to my surgeon, is caused when the nerves are cut. It is quite common and it has taken a few months, but the feeling is almost back to normal. I also had a lot of neck stiffness and could barely turn my head but as the weeks went on, I gained more mobility in this area. There was also redness and swelling at the incision site but that has gone away. I am trying to reduce the risk of Meaty (my scar) developing into a keloid (raised scar common in Black people). I also had dizziness, and fatigue as my body readjusted to know thyroid and the new thyroid hormone replacement. Ongoing: Some irritability, depression, and thinner hair. I did not experience these until after though. The dizziness is gone. Also, I had these weird tingling sensations going on in my hands and legs for a while. When I was "hyper" (before my thyroid hormone dose was readjusted), I had hot flashes, heat intolerance (always feeling hot), heart palpitations (rapid heart beat) that wouldn't slow down, jitteriness, weight loss, shakiness, some anxiety, and insomnia (going to bed late, rising early). My appetite and taste were gone after the radiation. However, now my appetite is slowly coming back. My taste has pretty much returned and the metallic-taste lasted for a few days. Weight gain. Low energy level. Now: Some side effects have gone away and others have lessened. Nose sores. My voice is still coming back. My mood is up and down. Energy is gradually returning.
Do you use alternative medication/treatments? If yes, which ones? Yes. I have had two Therapeutic touch sessions and a couple of Reiki (I love it). I also go to counselling. I see a naturopathic doctor as well who has given me different prescriptions including vitamins, homeopathics, and other medicines to boost my immune system, reduce side effects, and promote energy. They gave me some creams and pills to improve healing of the scar. I have also used Vitamin E. Now I use Scar Therapy cream. I have done some yoga and I do mindfulness meditation.
What helped you to cope with your thyroid cancer/disease/illness? I think being mindful and respecting my healing process. Also, I found the wonderful circle of my fiance, family, relatives, friends, church members, and others to have helped me stay the course. I did do exercise at different points in my journey (as I was able). Reaching out to people and finally coming to terms with the term (pun intended) cancer. Some points I started to get really angry and frustrated about dealing with the health/insurance/government system and I was getting really upset so I felt I needed a vacation from this, to be in nature, and connect with others. So, drawing from the strength of other survivors, going to Wellspring (cancer support centre), and also to Newfoundland (nature thanks to Young Adult Cancer Canada), helped a lot. Being proactive (challenging the health system, insurance, etc.) when possible. It took a lot out of me energy-wise and frustrated me but I felt a whole lot better than doing nothing. Expressing myself through writing (journaling, blogging) and the arts (music, art). Using my voice. Praying. Staying positive. Listening to my body and pushing myself at times (e.g. to get out). People in my life who just out of the blue offered kind words.
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them? Yes. I did an internet search and learned about Thyroid Cancer Canada and joined ther online support group. I also learned about them through the internet and posters at Wellspring (cancer support centre). I go to Wellspring for yoga classes, workshops, and cooking classes. I am doing their Art Therapy, Writing for the Health of It, and the Healing Journey classes right now. I also attended Retreat Yourself which is organized by Young Adult Cancer Canada.
Do thyroid cancer/diseases run in your family? Yes. Hypothyroidism and goiter are in my family but no thyroid cancer.
How has your thyroid cancer/condition impacted/changed your life?Hugely and in positive ways. First, I changed my diet and became a vegan. I have begun to see more food as medicine. I am becoming a vegan chef and preparing the best foods to nourish my body. (And prevent future cancers such as bladder the chances of which are slightly increased because of the radiation.) This has led me to read more books about nutrition and healing and reach out into the community more. I get organic fruits and vegetables for a good price through the Good Food Box. Also, I am not afraid of the word cancer anymore and I have made connections with cancer survivors. We have all shared this journey and understand. I belong to this new community of cancer survivors. The lessons I have been learning through this journey and my desire to connect has led me to maintain my blog. Also, I do not take life and very importantly, myself for granted. All of my dreams and aspirations, my self-care are all very important. Plus, I see that every moment counts. People count. I also have become more mindful and speaking my mind more, not holding in so much. I will waste no time in pursuing my dreams and goals. I have so much to be thankful for. Also, prayer has been very important to me during this journey. I talk to God daily and I take peace in that. Lastly, I learned a lot about my own strength and resilience. I'm a "tough cookie".
What was the most challenging thing about your thyroid condition/cancer?
The surgery and side effects were tough but seem small when compared with these other atrocious challenges I faced. All of the bureaucracy, forms, letter writing, and phone calls. Especially what I had to go through with getting Thyrogen. My health insurance wouldn't cover it (it cost $ 2000) and took three weeks to let me know. (I appealed this decision with a formal letter.) I also applied for the Ontario Drug Benefit and was approved. By that time, the Thyrogen supply had run out in Canada. Then I tried to get a hold of it in the US and it was unavailable. I also could not put off my radiation any longer so I had to "go hypo" and do my radiation without Thyrogen. "Going hypo" had challenges in my case such as depression, weight gain, and not being permitted to drive which again were to be expected. Also, trying to get a second opinion about radiation was an ordeal. I went through four (4) endocrinologists' opinions and referrals. Also sick benefits from the government resulted in a 60% reduction in my income and 80% if you include the reduction in my summer pay. (I've appealed a decision and attended a hearing for the government to not pay me for March Break.) As a result, I have used most of my savings and my income tax return to tie me over. Plus, advocating for my right to have time to heal. The whole cancer journey has been exhausting. Through these struggles, it seems like there is this push to "patch you up" and send you back to work as quickly as possible whether you feel well or not.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others?
Take your health in your own hands. Only you understand your suffering. Be your own health advocate or if your lucky, find someone who can be your health advocate. Be an exceptional patient. Take time to heal. Feel empowered to heal yourself physically, spiritually, and emotionally. Reach out to others because you don't need to go at this alone. I also did not realize how much of an impact this would have on others. Even if people do not call you or write you, it doesn't mean that they don't care. Also, express your feelings. No matter how crazy, angry, negative, or positive they are. They all matter. State your needs.
What is the latest update on your illness now?
My whole body scan results show that the cancer has not spread to other parts of my body. There is some activity in my neck which is normal to see after RAI. They don't know if it's cancerous or non-cancerous yet but there will be follow-up blood tests to check. There may be a small chance that I have to repeat the iodine but at a lower dose. Also there may be readjustments on my thyroid hormone dose. The prognosis is good since I'm in a low risk group. The researchers say that thyroid cancer has a 95% recovery rate with no recurrence.






ERIN
This Butterfly Tale is from Erin in Meteghan River, Nova Scotia, Canada. This village is located on the very beautiful coast of the Clare Region on the Baie Sainte Marie. Erin chose to post her Butterfly Tale at helium.com. To read about her amazing Thyroid Cancer Journey, click here. Click here to read her profile.







JEN
Name: Jen
Gender: Female
City/Province/State/Country Calgary, Alberta, Canada
Current Age: 32
Thyroid Cancer/Condition: Papillary, Stage 2
Age when diagnosed with Thyroid cancer/condition/Disease: 19
Did you know much about your thyroid condition/disease before your diagnosis? No, being so young, I never thought about cancer.
How did you discover your condition?: Pre-op to have my wisdom teeth removed, the dr. was doing a locum for my GP and had just finished training with thyroid conditions. She found a lump.
Were there any clues about your thyroid cancer/condition before the diagnosis? In hindsight, yes. I was always tired, and didnt feel well.
How did you first feel when you were first diagnosed? Scared and sad.
How did your loved ones react when you told them? My parents were there with me when I received the diagnosis - they cried but then tried to be strong for me.
How was your condition treated? Were there complications? Surgery, there were complications - hypocalcemia, which was pretty severe. Also radiation - because I had to have so much there was salivary gland damage.
Do you take medication for this condition? If yes, which ones? Synthroid, calcium, vitamin D.
What side-effects did you experience from your treatments? Salivary gland damage was the only long term side effect, but the radioiodine treatments are no fun - short term side effects are general malaise and nausea. I also had hypocalcemia post-operatively. This eventually corrected itself.
Do you use alternative medication/treatments? If yes, which ones?: a lot of vitamins to stay healthy (folic acid, cod liver oil, lots of vitamin D and others) and I used vitamin E topical cream to heal the scar.
What helped you to cope with your thyroid cancer/disease/illness? Staying busy! I was working at the time and attending university, and I had a great group of friends. Staying focused and busy and supported by family and friends helped me through those difficult times.
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them? Not then, but now I am a member of Thyroid Cancer Canada.
Do thyroid cancer/diseases run in your family? No.
How has your thyroid cancer/condition impacted/changed your life? This is a big question! My life is totally different than before. Thyroid cancer comes with life long follow up. Now that I am a mother, I am so scared that I may not be there for my girl as she grows up. I need to have health care support lined up before I move anywhere, which as a young person with school and starting a career, has been a few times.
What was the most challenging thing about your thyroid condition/cancer? Hands down the most challenging thing has been navigating the medical system. I have fallen through the cracks, yelled, cried, you name it. Luckily now I seem to have a good dr. and have learned that I must be responsible for my own care. When testing was necessary pre-thyrogen (and I may face this now with the shortage), going hypothyroid affected every aspect of my life. Because I "looked okay" and didn't "look like I had cancer" I felt as though people thought I should work harder, have more energy. I found this difficult.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others? Be in charge of your own health care, educate yourself. Be a strong advocate for yourself. Be assertive. Stay healthy and happy - its the best thing for your health.
What is the latest update on your illness now? With thyroid cancer, unlike other cancers, the 10 year mark after the last successful treatment marks the beginning of "remission". For me, that could be this summer.






GINA
Name Gina
Gender F
Current Age 38
Age when diagnosed with Thyroid cancer/condition/Disease 15
Did you know much about your thyroid condition/disease before your diagnosis? no
How did you discover your condition? felt lump in my throat
Were there any clues about your thyroid cancer/condition before the diagnosis? no
How did you first feel when you were first diagnosed? My lump was not cancerous however I was not happy that my parents and doctor made the decision to have my thyroid removed while I was under without consulting me . I understood why they made that decision but I felt left out of the decision making in regards to my own body. Sometimes I feel it would have been best to leave mt thyroid in as there was nothing wrong with the functioning,
How did your loved ones react when you told them? How was your condition treated? (e.g., surgery , medication) Were there complications? I had a thyroidectomy and 0 complications.
Do you take medication for this condition? If yes, which ones? Synthroid
What side-effects did you experience from your treatments? nausea from the general anesthetic
Do you use alternative medication/treatments? If yes, which ones? no
What helped you to cope with your thyroid cancer/disease/illness? I the biopsy of the lump was shown to be non cancerous. I was very young and resilient and the thyroidectomy did not have a huge effect on me. I sometimes wish I did not have to take the daily thyroid hormone supplement.
Did you join any support groups or get information from associations? no
If yes, which ones? How did you learn about them? Do thyroid cancer/diseases run in your family? no
How has your thyroid cancer/condition impacted/changed your life? It's made me more conscious about my health and body.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others? Make sure to get your tsh levels checked every 6 months to a year. I've also noticed when my dosage was off, I experienced negative or depressive thoughts. Also, my tsh levels had to be monitored closely as my synthroid dosage changed significantly during pregnancy. Be in tune with how your feel and signs of hypo or hyper symptoms as this means your dosage could need to be changed.

To read other Butterfly Tales (Profiles) about survivors of thyroid cancer, visit the Young Adult Cancer Canada (YACC) website to read the profiles about thyroid cancer.









Shalimar Manuel
Click here to read Shali's experience with thyroid cancer






Katie Stoddart
Click here to read Katie's experience with thyroid cancer






Denise Organ
Click here for Denise's experience with thyroid cancer






Tammy Stockman
Click here for Tammy's experience with thyroid cancer




To read other blogs by survivors of thyroid cancer visit the Thyroid Cancer Canada site.

Blue Butterfly Photos

Yesterday, during my art therapy group, one participant told me about the film "The Blue Butterfly" or "Le papillon bleu", a Quebecois film. The film is about a boy who has leukemia who dreams about seeing the rare blue butterfly in Costa Rica. The butterfly is supposed to magical and the boy hopes it will cure his cancer. I wish to see the real thing one day but, in the meantime, I have a lot of blue butterflies around me.

(Butterflies also symbolize rebirth and regeneration as well as the shape of the thyroid.)


The real Costa Rican butterfly


I made this blue butterfly when I was in Newfoundland a few weeks ago. It got a little crumpled during the travel but still survived.


This Kleenex box was in my room during my four-day radiation isolation. Originally, I bought the Kleenex because the box is blue and it would match the bedroom it was meant for. But I did not even realize it until after my isolation that this box too had blue butterflies.


This is a special blue butterfly. If you look really closely, the word F R I E N D is written on one of the butterfly's wings. I bought this necklace as part of a pair when I was at a gift shop in Newfoundland. I gave my youngest sister the other necklace (B E S T). We both share a special bond. The other reason is we both have had to overcome health challenges over the last two years. (We also both want to get butterfly tatoos.)


A few nights ago, I saw this blue butterfly light on my next door neighbour's porch. I had to take a photo.



We have been having so many rainy days lately in Toronto and I decided to buy my very first pair of rainy day boots, aka galoshes. So when I saw these ones with the blue butterflies on them, I knew I found the right pair.


Although this is not a blue butterfly (obviously), I wanted to show off my little piece of Newfoundland (and Labrador). This stone is called a Labradorite or calcium sodium aluminum silicate. Although it could be found in other parts of the world too, I wear it daily so I could remember the peace, tranquility, and natural settings of Newfoundland. When I saw this ring in the gift shop, rough and unpolished, it stood out from the others. It looked edgy and I knew my fiance would like it, so I knew this was the ring to choose. (Thankfully the shopkeeper gave me a good deal.)


Okay, it's not blue but it is a butterfly. This lovely card was signed by the students from my class. Very, very special indeed.


This was a beautiful blue butterfly pendant worn by a participant at the Thyroid Cancer Canada Patients' Forum on May 28, 2011.


I saw this beautiful poster at Sheena's Place, a centre offering hope and support for people with eating disorders, during their annual Expressive Arts show. But if you look real closely at the right foot...


You'll see a blue butterfly.