Saturday, April 30, 2011
Pearls of Wisdom
Today was an amazingly full day. I'm exhausted but in such a good way. I love Newfoundland so far. The pace at this retreat location is much slower and healing. The facilitators were kind enough to build in a lot of breaks and space in this day. The past two days we have spent opening up (like a door), talking about the most important issues that we are facing. Honey, let me tell you. Young adult cancer patients are fierce, genuine, and funny. I have shared lots of tears as well as laughs so far. So many pearls of wisdom!!! Took lots of photographs too of beautiful things which I will post soon. Yesterday, I went on a walk with some of the participants to a stunning lookout point. There I saw snow-capped mountains open out to the Atlantic Ocean with a huge drop below. Yesterday, I watched the sunset over the Atlantic. I've meditated each morning. I feel my body healing. Today, we walked for 1 1/2 hours to see the lighthouse at Lobster Cove. On the way there, I got tired and slowed down. (In fact, at several points, I had to take a breather and pause.) We walked up a path to take more photos. And by the time I got to the lighthouse, I was excited (but so exhausted too). And whether some of us walked all the way or took the van part of the way or the full way, we all made it to the lighthouse (although some needed to sleep). I came back to the hotel for a quick nap and then there was dinner. We wrapped up and since I'm still tired, I'm going to bed.
Friday, April 29, 2011
Shad - Keep Shining
Thank you for Sarah Michelle Brown who posted this on my wall. Sarah is the director of this beautiful music video of the single KEEP SHINING by London, Ontario-based rapper, Shad. (Big up London! My family and I lived there for a few months when I was a baby.) I met Sarah almost ten years ago through my film festival ICED IN BLACK when she submitted her short film, BLIND DATE which was one of the films I toured across Canada. From Sarah, I learned the importance of storytelling and writing things down. She is a hardworking, industrious actress, filmmaker, photographer, model, and writer. Keep shining! I take strength in these words.
Thursday, April 28, 2011
Where am I and what am I doing here?
Where am I?
Currently, I am in Gros Morne National Park (specifically Rocky Harbour, Newfoundland) for a healing retreat with Young Adult Cancer Canada.
LESSON: Newfoundland is a province in Canada. It was the last province to join Confederation in 1949 and is currently known as Newfoundland and Labrador.
Last night I arrived by plane to Deer Lake, Newfoundland. The time zone here is 1 1/2 hours ahead of Toronto's time.
Busted
Going through the airport after my radiation treatment, I was warned that I was bound to set off the alarm. (I expected some loud siren to go off with flashing lights and having a swat team lead me into some search room.) It totally wasn't like that. After walking through the scanner, a woman in uniform came up to me and told me I needed a secondary search. She said I could go through the machine or have a pat down. I'll take the machine (hell, yeah! As if I want some strange woman to give me a pat down.). So I walked into some futuristic looking clear machine and stood in this rotating scanning device similar to revolving doors. Then I was instructed to come out. The machine began to compute some data. "I have a medical note," I told the other woman in uniform. She did not respond. Then a human animated silhouette popped up on the screen. The figure was beige in colour but there was a red dot (in the ovarian/intestinal region). "Do you have a belt on?" she asked. "No," I said. Then she told me to go through. (That was so embarassing because I had to go to the bathroom and wondered if my "radioactive" waste was showing up on the screen.)
So as I was waiting for the plane to load, I told the staff member, "I had radioactive treatment. I'm safe to be with the public but I request not to sit beside any children or pregnant women." So after a long wait and being asked to step out of the line, I was seated IN THE EXECUTIVE SECTION. I went to my seat which was empty. No pregnant women, no children. Then I looked behind my seat and I saw woman with a baby on her lap. I told the stewardess that I could not sit there because I had radiation treatment. So she placed me in another seat beside a woman. I sat down beside this woman, looked at her stomach, and thought "no baby bump."
All of a sudden, a young pilot came up to me. "Did you have radiation?" he asked.
"Yes," I replied. (I was thinking that he was going to escort me off the plane.)
"When?" he asked.
"On Thursday," I said.
"Thursday?"
I nodded. "I have a note," I offered.
"Let me see," he replied. I gave him the note. "Did you receive 100?" He asked.
"Yes," I said.
He looked up and began to do calculations in his head. "How much do you weigh, if you don't mind me asking?" I told him. He looked up as if he was doing calculations in his head. "So you should be at about 20 now."
"Wow, you know more than my doctor," I said with a laugh.
"Well, i've seen it all," he said smuggly. I know he liked this challenge.
"I'm pregnant," the woman beside me said.
Oh.
And with that, I quickly got up and apologized for not asking her. The pilot agreed that I would have to move. So did I. I don't want to harm a life.
So there I was, standing inside the plane, seatless.
About five long uncomfortable minutes passed before, the stewardess had asked another passenger to move so I could sit.
What the *&#$ am I doing here?
Executive class is really different. First, I was offered something to drink. Then, I tried to get "THE KING'S SPEECH" to work on my personalized screen. The touchscreen would not drag properly, finally with a lot of effort, it began to work. I was watching it while we waited for the connecting flights.
Finally, the plane began to move. The flight safety video came on and interrupted the movie. That was the end of that. As we sped down the runway and I started to lift off, tears rolled down my chin. (Oh God, not this again.) I was crying and couldn't stop. The emotional floodgates opened and I had no Kleenex. So I used my scarf. I thought about all of the actions that brought me to this moment, the miracles, and the love. There were so many reasons I shouldn't be on this plane but there was no turning back now. I had sponsors pay for me. I finally had my radiation behind me and I had a doctor who said I was safe to fly. I had folks praying for me. I was overwhelmed with gladness. I also remembered my late Aunt Hilma "Jenny" Walker, one of the first flight attendants for Air Jamaica. She would have totally done this adventure. I remember the postcard of the junks (Chinese boats) in Hong Kong when she visited. She was exuberant and had this beautiful zest for life. As we were airborne, they plane stabilized and so did my emotions. The attendant gave us hot steamed face towels. I wiped my face.
The guy sitting beside me was pleasantly chatty. He was middle aged and a returned Newfoundland native who had lived all over Canada and in other countries. I put down my book. We talked about cancer, visiting Jamaica, similarities between Jamaica and Newfoundland (cod fish and "screech" which is Jamaican rum) what to see in Newfoundland, factory farming,... It was a completely easygoing conversation. But just as easily as that conversation began, it ended just as abruptly as soon as the plane landed. He talked to his fellow Newfoundland passengers and he was gone. I said, "Bye!" but he didn't hear.
At the airport, I got my bag and got up my courage to ask another lone passenger if she was by any chance part of the Young Adult Cancer group. "Are you Nadia?" she asked. Yes and with that we decided to share a cab to the Driftwood Inn. (Only thing, it took us a while to get a cab. Unlike Toronto's busy Pearson International Airport, there were not loads of taxis waiting. There were probably one or two cabs. Also, within the half an hour while we waited, the airport was deserted. I guess there were only two cabbies servicing Deer Lake because that night. The driver returned for us after two trips with other passengers to and from the airport.)
"Are yous part of that cancer group?" he asked. Yes, we replied. "Yous twos never met before?" No, we replied. Were there others like us at the hotel?, I asked. "Well, I dropped off this coloured girl?" earlier on. Coloured girl? Do they still use that term out here?
"Well, she wasn't on our plane," I replied. (That was for sure. I did the count on the plane. I was the only Black person, aside from the mixed boy.)
When I finally arrived in my room, panic set in. "What was I doing here?" I started to get real anxious. What if all the people I meet are hicks? Why did I leave home? I miss my fiance and cats. I just got out of isolation, I didn't even get to spend much time with my fiance. I felt cold. It was four in the morning and I couldn't find the book I was reading. I realized I left my book on a seat on the plane. It was a library book. I began to freak out and search for it. I don't know any of these people on the trip. I will be trapped here for a week. I was feeling hungry (my appetite was just coming back) but the vending machine food did not appeal to me. Where was I? Outside it was too dark to see anything. And on top of all this, I didn't know what time it was. (My cell phone did not reset and the alarm clock in my room was blinking the wrong time.)
Eventually I calmed down enough to grab my big orange journal and I began to write. I wrote about my worries, each and every one and addressed them calmly. (No, maybe I shouldn't have been reading that book about work. Eat that bag of almonds that the passenger gave you. Put on something warm.)
And I fell asleep.
This morning, I hurriedly blogged and despite the brown water that ran from the taps (it eventually ran clear and the Driftwood Inn staff checked it out), a brunch of veggie stir fry at Jungle Jim's with the girl I met at the airport, and then we met the another girl and took a cab to the retreat.
The Driftwood Inn
Brown Newfoundland tap water
Bye bye, bedroom!
Outside my window at the Driftwood Inn
Jungle Jim's
When we arrived at the Deer Lake Hotel, there was a dining room full of participants and organizers full of smiles and positive energy. I knew what I was doing here. I was given a welcome package, we packed the big yellow school bus, and started the speedy two-hour trip to the Ocean View Hotel at Gros Morne National park. Only, our bus driver did it in 1 hour on slick, rainy, hilly roads.
The yellow rocket
Home for the next four days
Newfoundland. I'm ready for you!
My (and my roommate's) room with a beautiful view!
Currently, I am in Gros Morne National Park (specifically Rocky Harbour, Newfoundland) for a healing retreat with Young Adult Cancer Canada.
LESSON: Newfoundland is a province in Canada. It was the last province to join Confederation in 1949 and is currently known as Newfoundland and Labrador.
Last night I arrived by plane to Deer Lake, Newfoundland. The time zone here is 1 1/2 hours ahead of Toronto's time.
Busted
Going through the airport after my radiation treatment, I was warned that I was bound to set off the alarm. (I expected some loud siren to go off with flashing lights and having a swat team lead me into some search room.) It totally wasn't like that. After walking through the scanner, a woman in uniform came up to me and told me I needed a secondary search. She said I could go through the machine or have a pat down. I'll take the machine (hell, yeah! As if I want some strange woman to give me a pat down.). So I walked into some futuristic looking clear machine and stood in this rotating scanning device similar to revolving doors. Then I was instructed to come out. The machine began to compute some data. "I have a medical note," I told the other woman in uniform. She did not respond. Then a human animated silhouette popped up on the screen. The figure was beige in colour but there was a red dot (in the ovarian/intestinal region). "Do you have a belt on?" she asked. "No," I said. Then she told me to go through. (That was so embarassing because I had to go to the bathroom and wondered if my "radioactive" waste was showing up on the screen.)
So as I was waiting for the plane to load, I told the staff member, "I had radioactive treatment. I'm safe to be with the public but I request not to sit beside any children or pregnant women." So after a long wait and being asked to step out of the line, I was seated IN THE EXECUTIVE SECTION. I went to my seat which was empty. No pregnant women, no children. Then I looked behind my seat and I saw woman with a baby on her lap. I told the stewardess that I could not sit there because I had radiation treatment. So she placed me in another seat beside a woman. I sat down beside this woman, looked at her stomach, and thought "no baby bump."
All of a sudden, a young pilot came up to me. "Did you have radiation?" he asked.
"Yes," I replied. (I was thinking that he was going to escort me off the plane.)
"When?" he asked.
"On Thursday," I said.
"Thursday?"
I nodded. "I have a note," I offered.
"Let me see," he replied. I gave him the note. "Did you receive 100?" He asked.
"Yes," I said.
He looked up and began to do calculations in his head. "How much do you weigh, if you don't mind me asking?" I told him. He looked up as if he was doing calculations in his head. "So you should be at about 20 now."
"Wow, you know more than my doctor," I said with a laugh.
"Well, i've seen it all," he said smuggly. I know he liked this challenge.
"I'm pregnant," the woman beside me said.
Oh.
And with that, I quickly got up and apologized for not asking her. The pilot agreed that I would have to move. So did I. I don't want to harm a life.
So there I was, standing inside the plane, seatless.
About five long uncomfortable minutes passed before, the stewardess had asked another passenger to move so I could sit.
What the *&#$ am I doing here?
Executive class is really different. First, I was offered something to drink. Then, I tried to get "THE KING'S SPEECH" to work on my personalized screen. The touchscreen would not drag properly, finally with a lot of effort, it began to work. I was watching it while we waited for the connecting flights.
Finally, the plane began to move. The flight safety video came on and interrupted the movie. That was the end of that. As we sped down the runway and I started to lift off, tears rolled down my chin. (Oh God, not this again.) I was crying and couldn't stop. The emotional floodgates opened and I had no Kleenex. So I used my scarf. I thought about all of the actions that brought me to this moment, the miracles, and the love. There were so many reasons I shouldn't be on this plane but there was no turning back now. I had sponsors pay for me. I finally had my radiation behind me and I had a doctor who said I was safe to fly. I had folks praying for me. I was overwhelmed with gladness. I also remembered my late Aunt Hilma "Jenny" Walker, one of the first flight attendants for Air Jamaica. She would have totally done this adventure. I remember the postcard of the junks (Chinese boats) in Hong Kong when she visited. She was exuberant and had this beautiful zest for life. As we were airborne, they plane stabilized and so did my emotions. The attendant gave us hot steamed face towels. I wiped my face.
The guy sitting beside me was pleasantly chatty. He was middle aged and a returned Newfoundland native who had lived all over Canada and in other countries. I put down my book. We talked about cancer, visiting Jamaica, similarities between Jamaica and Newfoundland (cod fish and "screech" which is Jamaican rum) what to see in Newfoundland, factory farming,... It was a completely easygoing conversation. But just as easily as that conversation began, it ended just as abruptly as soon as the plane landed. He talked to his fellow Newfoundland passengers and he was gone. I said, "Bye!" but he didn't hear.
At the airport, I got my bag and got up my courage to ask another lone passenger if she was by any chance part of the Young Adult Cancer group. "Are you Nadia?" she asked. Yes and with that we decided to share a cab to the Driftwood Inn. (Only thing, it took us a while to get a cab. Unlike Toronto's busy Pearson International Airport, there were not loads of taxis waiting. There were probably one or two cabs. Also, within the half an hour while we waited, the airport was deserted. I guess there were only two cabbies servicing Deer Lake because that night. The driver returned for us after two trips with other passengers to and from the airport.)
"Are yous part of that cancer group?" he asked. Yes, we replied. "Yous twos never met before?" No, we replied. Were there others like us at the hotel?, I asked. "Well, I dropped off this coloured girl?" earlier on. Coloured girl? Do they still use that term out here?
"Well, she wasn't on our plane," I replied. (That was for sure. I did the count on the plane. I was the only Black person, aside from the mixed boy.)
When I finally arrived in my room, panic set in. "What was I doing here?" I started to get real anxious. What if all the people I meet are hicks? Why did I leave home? I miss my fiance and cats. I just got out of isolation, I didn't even get to spend much time with my fiance. I felt cold. It was four in the morning and I couldn't find the book I was reading. I realized I left my book on a seat on the plane. It was a library book. I began to freak out and search for it. I don't know any of these people on the trip. I will be trapped here for a week. I was feeling hungry (my appetite was just coming back) but the vending machine food did not appeal to me. Where was I? Outside it was too dark to see anything. And on top of all this, I didn't know what time it was. (My cell phone did not reset and the alarm clock in my room was blinking the wrong time.)
Eventually I calmed down enough to grab my big orange journal and I began to write. I wrote about my worries, each and every one and addressed them calmly. (No, maybe I shouldn't have been reading that book about work. Eat that bag of almonds that the passenger gave you. Put on something warm.)
And I fell asleep.
This morning, I hurriedly blogged and despite the brown water that ran from the taps (it eventually ran clear and the Driftwood Inn staff checked it out), a brunch of veggie stir fry at Jungle Jim's with the girl I met at the airport, and then we met the another girl and took a cab to the retreat.
The Driftwood Inn
Brown Newfoundland tap water
Bye bye, bedroom!
Outside my window at the Driftwood Inn
Jungle Jim's
When we arrived at the Deer Lake Hotel, there was a dining room full of participants and organizers full of smiles and positive energy. I knew what I was doing here. I was given a welcome package, we packed the big yellow school bus, and started the speedy two-hour trip to the Ocean View Hotel at Gros Morne National park. Only, our bus driver did it in 1 hour on slick, rainy, hilly roads.
The yellow rocket
Home for the next four days
Newfoundland. I'm ready for you!
My (and my roommate's) room with a beautiful view!
Wednesday, April 27, 2011
The calm and the storm
Today I woke up with a little more energy than the day before. I couldn't believe that today finally came-- tonight I would be flying out to Newfoundland to attend a healing retreat. Given that my hair was the hot mess it was, I visited my hairstylist/loctician Glenroy Simmons, aka Blueloc . I hadn't seen Glenroy in about a year. Ever since Strictly Roots closed down and went virtual that is. (You can find Strictly Roots on facebook. I love Glenroy-- he's very skilled at what he does, always knows how to style up my hair, and he's a good friend too. (We played 'Mas in Caribana together in 2009.) So he worked his magic and in no time, PRESTO! My dowdy locs were singing a new tune.
It was such a nice day that I decided to have lunch at Mela Italian Vegetarian Cafe where not only did I eat a scrumptious breaded eggplant panini with herbed tomato sauce and a chocolate macaroon, but I got to practice my Italian. Plus, this place gets extra points. (The chef called me "signorina" which means "young miss".) Click here to see their website.
I decided that I wanted to find some nice silk scarves to brighten my outfit and mood. Glen suggested a few shops in the PATH (Toronto's underground mall). I found a beautiful silk scarf for $ 5.99 at Panache! (I hoped that these were not sweatshop scarves so I decided to make it even I would walk all the way to TEN THOUSAND VILLAGES in the Annex where I knew I could purchase another scarf that would be fairtrade.) I knew that this would be a long walk but it was such a lovely day, 19 degrees Celsius and my first official "Day Out" of Radiation. (Did I say that yesterday?) So I bought a scarf and earrings and a small gift for my mom's birthday (which will double as a Mother's Day gift). You can visit their website at: http://www.tenthousandvillages.ca/ And this is when my body first caught up to me. I felt tired all of a sudden. Really tired. So the helpful saleswoman/volunteer (that's how this store is run), let me sit down and brought me water. (They even offered tea. That's so sweet.) So I sat down, rested until I felt strong enough to go home.
So you get the idea.
My day started pretty calmly... then I got home.
Oh my gosh! I had so much to do in such a short amount of time. I was to fly out to Newfoundland tonight to attend my healing retreat. I quickly assembled my to-do list and got "to-doing", while making adjustments along the way. Somethings I had to take out (no I couldn't make it to the bank, I'd have to do internet and phone banking and no I'm WAY too LATE AND EXHAUSTED to take the public transit to the airport) and others were MUSTS (I must eat).
I am happy to say that I got the most essential things done. My fiance got home and got into action to help me get some things ready. (I hadn't read the THINGS TO BRING LIST until the last minute so his quick fix of my winter boots was helpful.) And before you know it, I was on a plane to Newfoundland.
Adam (my fiance) and I
Gate 153 to Deer Lake, Nfld
Up, up, and away!!!
Landed!!!
It was such a nice day that I decided to have lunch at Mela Italian Vegetarian Cafe where not only did I eat a scrumptious breaded eggplant panini with herbed tomato sauce and a chocolate macaroon, but I got to practice my Italian. Plus, this place gets extra points. (The chef called me "signorina" which means "young miss".) Click here to see their website.
I decided that I wanted to find some nice silk scarves to brighten my outfit and mood. Glen suggested a few shops in the PATH (Toronto's underground mall). I found a beautiful silk scarf for $ 5.99 at Panache! (I hoped that these were not sweatshop scarves so I decided to make it even I would walk all the way to TEN THOUSAND VILLAGES in the Annex where I knew I could purchase another scarf that would be fairtrade.) I knew that this would be a long walk but it was such a lovely day, 19 degrees Celsius and my first official "Day Out" of Radiation. (Did I say that yesterday?) So I bought a scarf and earrings and a small gift for my mom's birthday (which will double as a Mother's Day gift). You can visit their website at: http://www.tenthousandvillages.ca/ And this is when my body first caught up to me. I felt tired all of a sudden. Really tired. So the helpful saleswoman/volunteer (that's how this store is run), let me sit down and brought me water. (They even offered tea. That's so sweet.) So I sat down, rested until I felt strong enough to go home.
So you get the idea.
My day started pretty calmly... then I got home.
Oh my gosh! I had so much to do in such a short amount of time. I was to fly out to Newfoundland tonight to attend my healing retreat. I quickly assembled my to-do list and got "to-doing", while making adjustments along the way. Somethings I had to take out (no I couldn't make it to the bank, I'd have to do internet and phone banking and no I'm WAY too LATE AND EXHAUSTED to take the public transit to the airport) and others were MUSTS (I must eat).
I am happy to say that I got the most essential things done. My fiance got home and got into action to help me get some things ready. (I hadn't read the THINGS TO BRING LIST until the last minute so his quick fix of my winter boots was helpful.) And before you know it, I was on a plane to Newfoundland.
Adam (my fiance) and I
Gate 153 to Deer Lake, Nfld
Up, up, and away!!!
Landed!!!
Butterfly Tales
On Easter Sunday, I returned to facebook. I also felt ready to share with my thyroid cancer journey with my facebook friends. Some of my friends shared their cancer stories.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.
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.
The Best Cancer, Part 3: FAQs
Here I will post my most frequently asked questions and the answers.
1. How did you find out you had thyroid cancer?
My doctor discovered a nodule (lump) in my neck during my annual physical.
2. How do you know if you have thyroid cancer? Did you have any symptoms of thyroid cancer?
Some people experience symptoms with thyroid cancer while others have no symptoms. I think I fit in the latter category since I had no symptoms. Or so I thought. Looking back, I realize that I did have some symptoms but I thought they were something else. I did feel tired a lot but I did tell my doctor and my levels were normal. However, I have always had low blood iron (borderline anemia) so I would chalk up my fatigue to this borderline anemia or lack of sleep. Also, my voice did begin to go deeper and a little more hoarse over the last couple of years but I thought that was from the stress of using it all day. I did not see any lump but I do recall sometimes feeling like my throat felt tight. Again, I thought this was stress.
3. Is this blog hard to maintain?
No. I am learning how to use the blog as I go along. Plus, I tend to journal a lot. The blog is a lot like my journal except there are some things I share only on my blog and other things only go into my journal.
1. How did you find out you had thyroid cancer?
My doctor discovered a nodule (lump) in my neck during my annual physical.
2. How do you know if you have thyroid cancer? Did you have any symptoms of thyroid cancer?
Some people experience symptoms with thyroid cancer while others have no symptoms. I think I fit in the latter category since I had no symptoms. Or so I thought. Looking back, I realize that I did have some symptoms but I thought they were something else. I did feel tired a lot but I did tell my doctor and my levels were normal. However, I have always had low blood iron (borderline anemia) so I would chalk up my fatigue to this borderline anemia or lack of sleep. Also, my voice did begin to go deeper and a little more hoarse over the last couple of years but I thought that was from the stress of using it all day. I did not see any lump but I do recall sometimes feeling like my throat felt tight. Again, I thought this was stress.
3. Is this blog hard to maintain?
No. I am learning how to use the blog as I go along. Plus, I tend to journal a lot. The blog is a lot like my journal except there are some things I share only on my blog and other things only go into my journal.
Tuesday, April 26, 2011
A Day Late and A Vote Short
I just found out today that I can't vote. That sucks! I take pride in civic duty and voting is the least I can do. The advance polls were April 22, 23, and 25 which were all days that I could not be in public spaces due to radiation. (Also don't they have radioactive scanners at the voting stations? I can't remember. Or maybe that's in the U.S.) Also today (by 6pm) is the day I would have had to have all my proof ID and forms received in time for voting by mail. (I didn't have enough time to gather all these before the deadline.) Also, I will still be in Newfoundland at my healing retreat on May 2, 2011 so I can't vote outside my riding. When I called the Elections Canada hotline, they directed me to my local voting office and they said that I could vote today. "What?" I asked. "Vote today?" There was no information on my voting card to indicate this. The guy on the phone said that it was under special circumstances voting on the website. "Unless you can make it here in 12 minutes..." he began. "But, it's probably no use by the time you get here, we'll be closed." (Don't you hate when people say that.) So I won't be able to vote in this federal election. Yeah! That's right. A national election and I don't get to have my say. "At least you get to vote in the provincial election in Ocotber," he retorted. That's not good enough, I thought.
So here I go folks. I'm going to vote here. I know it's supposed to be anonymous and I didn't plan to be political (or partisan) in my blog but I've been forced to vote through my influence on others.
Let's just say that ORANGE and GREEN look very catchy this season. Wink! Wink!
So here I go folks. I'm going to vote here. I know it's supposed to be anonymous and I didn't plan to be political (or partisan) in my blog but I've been forced to vote through my influence on others.
Let's just say that ORANGE and GREEN look very catchy this season. Wink! Wink!
Beautiful People
Barbara Tucker 'Beautiful People'
This morning as I was inviting my facebook friends (all 680 of them) to this blog, I was struck by something. Every person on that list is beautiful. I noticed the profile photos-- people smiling, holding up their children, cherished photos, places they visited... It was all beautiful. I also wondered how certain ones were doing and realized that thanks to facebook, I am connected with so many people but I am disappointed that it is difficult to check in with almost 700 people on a regular basis. But then I realized God knows about each one, about each life, about their drama and joys, and He has the capacity to check in on each one. So then I began to say their names as I clicked on each photo. I also was thankful that I know such a community of people and realized even more that I do not need to deal with my illness alone. So many have already taken the time to share with me their own thyroid stories, best wishes, and prayers-- even one from Croatia. People are beautiful!!! Through my journey, I am learning that more and more and I have had to catch myself more than once, rethinking the intentions or actions of another. When I am wondering why so-and-so did not call, I am realizing that maybe so-and-so has got a lot going on, is going through his or her own s*#t, or just plain doesn't know. Or maybe I can check in on so-and-so. It's that simple and then I move on.
End of My Isolation in Photos
Look Ma, no taste
On Sunday, the last day of my isolation, I sprang from bed and started my hormones again. (Hello Cytomel and Eltroxin.) I felt a little more alert (just a little). I ate salty chips and salty vegan sausage. I was able to not just watch the second half of a movie, but I watched another one. A whole movie! The first movie I finished was Julie and Julia about a writer, Julie Powell, who "finds herself" while cooking from the cookboook, Mastering the Art of French Cooking by renowned chef Julia Child. (Julie blogs about her experience which is eventually made into book and then a movie. Hmmmm....) While watching this movie, I had a craving for flavourful food. I still had no appetite (it's gone, lost, not sure where). I feel full all of the time. Plus, vegetables seemed to repulse me. (This from a fully fledged new vegan is devestation.) My solution? Thai food.
I ordered Spring Rolls delivery. A stirfry of tofu and eggplant with rice and you guessed it folks? Springrolls with dipping sauce. I had the delivery guy bring the food to the backdoor and I signed the form at a distance. I told him I had to stay back since I was in treatment for cancer. (It's not catchy. Don't worry, I insisted.) Only thing is the springrolls weren't as crispy but I still ate them. Then I went for the entree. I had it before and knew it was tasty except it tasted bland. I put hot pepper sauce and soya sauce on the rice desperately trying to add flavour. My taste buds were deceiving me and when I tasted the carrots, I started to cry. I couldn't taste that familiar sweet-sour taste that is typical of Thai food. I was saddened by this. I love food and I love to cook. And here I was, I neither felt like eating it and I couldn't taste and I was watching this movie while these women were making beautiful food. I feared that my taste would never come back. (I know this is a side effect of the radiation but it freaked me out!)
The other movie I watched was Temple Grandin about the autistic animal rights activist. I have worked with autistic children and I find them to be unique and fascinating. Temple has an extraordinary gift-- to think in pictures-- and had the nurturing and guidance from her mentors and guardians to use it to help animals. She was the first person to help explain what it is like to be autistic. (From what I gathered, I think she has Asperger's Syndrome which is on the autism spectrum.) So inspiring. I managed not to tear up again.
I'm Coming Out, I Want the World to Know
Monday, today, was exciting. I felt a little more energy then the day before but still needed to lay down and rest at times. I cleaned my bathroom. And when I say clean. I mean deep clean. Rinse. Disinfect. Mop. Scour. I would have made Mr. Clean proud. It took me probably about 2 hours to fully sanitize and "de-radioactivize" this space. I was so proud of it. I needed to get a photo.
Look at the shine!
Bling!
I had a neat facebook live chat with a professor I know and her experience of recovering from a partial thryoidectomy. It essentially changed her life and through her healing process shaped who she is. Like me, she engaged in a lot of inner work. She was eighteen when she began this journey. There was so much that we shared that we decided to continue this conversation at a later time.
Anyway, I had my first visitor post-isolation. Suzanna was in town from Kitchener-Waterloo. (Shout out to my KW peeps. Woot! Woot!)
My brave first post-isolation guest
I didn't get in the photo with her since my camera was still a little radioactive. Also I'm a little camera shy. (I look a hot mess. My already chubby cheeks have gone from chipmunk to bulldog overnight.) Suzanna and I shared our adventures over ginger tea-- she of her pan-Asian expedition and my medical system safari. She gave me a get well card with a fairy godmother wearing combat boots. Everyone needs a fairy godmother wearing combat boots.
My fiance Adam came home too. (Talk about awkward hug.) There are all these rules about physical distance which we were trying to decipher from the hospital summary sheet. Forget consulting websites and the internet. The information is all contradictory. For example, this is what the hospital suggested:
For 3 days (72 hours) after you take the I-131 therapy pills, you may spend:
MAXIMUM 45 minutes/day at 1 m (3.5 feet) from other people
MAXIMUM 2 hours/day at 2m (7 feet) from other people
MAXIMUM 7 hours/day at 3 m (10 feet) from other people
Adam did some research on the internet. The websites each say something different but one thing is for sure. No exchange of bodily fluids. Plus, no pregnant women and no children. Not necessarily in that order.
Rain
Adam and I left the house to run a few errands. When I stepped outside, there were droplets of rain falling lightly. I smiled and revelled in the freshness. *&!$ the umbrella. It felt that good. I needed this. It felt good to be outside and to feel alive. I need to fax something. He had to buy toothpaste. I needed to get vegan food that might "turn on" my appetite. We ate at Chipotle's. I had a huge veggie burrito knowing that it would probably be the only meal I could manage for the day. (I did start the day with a smoothie and tea. I also ate fruit.) I beelined from every child under 12 and potentially pregnant woman around me.
Hair Issues
I called back my hairstylist for the last five years. (The salon he worked at closed down and I began to go to a closer salon.) My hairstylist is more than a stylist and such a soulful, creative person. I told him about my cancer. (He knew months before I had been in hospital but at the time I was not ready to reveal why.) He listened and encouraged me. "How's your hair?" he asked. I think it's thinning. There. I said it. It's true. My beautiful, glorious bush of hair. (My mom always said that God blessed me with one good head of hair.) My roots have grown in but some of my dredlocks were hanging by spindly strands looking like they were ready to snap at the root. "I trust you will do a good job. Whatever you say, I'll do it." I put my hair completely into the hands of my stylist. I will see him soon.
On Sunday, the last day of my isolation, I sprang from bed and started my hormones again. (Hello Cytomel and Eltroxin.) I felt a little more alert (just a little). I ate salty chips and salty vegan sausage. I was able to not just watch the second half of a movie, but I watched another one. A whole movie! The first movie I finished was Julie and Julia about a writer, Julie Powell, who "finds herself" while cooking from the cookboook, Mastering the Art of French Cooking by renowned chef Julia Child. (Julie blogs about her experience which is eventually made into book and then a movie. Hmmmm....) While watching this movie, I had a craving for flavourful food. I still had no appetite (it's gone, lost, not sure where). I feel full all of the time. Plus, vegetables seemed to repulse me. (This from a fully fledged new vegan is devestation.) My solution? Thai food.
I ordered Spring Rolls delivery. A stirfry of tofu and eggplant with rice and you guessed it folks? Springrolls with dipping sauce. I had the delivery guy bring the food to the backdoor and I signed the form at a distance. I told him I had to stay back since I was in treatment for cancer. (It's not catchy. Don't worry, I insisted.) Only thing is the springrolls weren't as crispy but I still ate them. Then I went for the entree. I had it before and knew it was tasty except it tasted bland. I put hot pepper sauce and soya sauce on the rice desperately trying to add flavour. My taste buds were deceiving me and when I tasted the carrots, I started to cry. I couldn't taste that familiar sweet-sour taste that is typical of Thai food. I was saddened by this. I love food and I love to cook. And here I was, I neither felt like eating it and I couldn't taste and I was watching this movie while these women were making beautiful food. I feared that my taste would never come back. (I know this is a side effect of the radiation but it freaked me out!)
The other movie I watched was Temple Grandin about the autistic animal rights activist. I have worked with autistic children and I find them to be unique and fascinating. Temple has an extraordinary gift-- to think in pictures-- and had the nurturing and guidance from her mentors and guardians to use it to help animals. She was the first person to help explain what it is like to be autistic. (From what I gathered, I think she has Asperger's Syndrome which is on the autism spectrum.) So inspiring. I managed not to tear up again.
I'm Coming Out, I Want the World to Know
Monday, today, was exciting. I felt a little more energy then the day before but still needed to lay down and rest at times. I cleaned my bathroom. And when I say clean. I mean deep clean. Rinse. Disinfect. Mop. Scour. I would have made Mr. Clean proud. It took me probably about 2 hours to fully sanitize and "de-radioactivize" this space. I was so proud of it. I needed to get a photo.
Look at the shine!
Bling!
I had a neat facebook live chat with a professor I know and her experience of recovering from a partial thryoidectomy. It essentially changed her life and through her healing process shaped who she is. Like me, she engaged in a lot of inner work. She was eighteen when she began this journey. There was so much that we shared that we decided to continue this conversation at a later time.
Anyway, I had my first visitor post-isolation. Suzanna was in town from Kitchener-Waterloo. (Shout out to my KW peeps. Woot! Woot!)
My brave first post-isolation guest
I didn't get in the photo with her since my camera was still a little radioactive. Also I'm a little camera shy. (I look a hot mess. My already chubby cheeks have gone from chipmunk to bulldog overnight.) Suzanna and I shared our adventures over ginger tea-- she of her pan-Asian expedition and my medical system safari. She gave me a get well card with a fairy godmother wearing combat boots. Everyone needs a fairy godmother wearing combat boots.
My fiance Adam came home too. (Talk about awkward hug.) There are all these rules about physical distance which we were trying to decipher from the hospital summary sheet. Forget consulting websites and the internet. The information is all contradictory. For example, this is what the hospital suggested:
For 3 days (72 hours) after you take the I-131 therapy pills, you may spend:
MAXIMUM 45 minutes/day at 1 m (3.5 feet) from other people
MAXIMUM 2 hours/day at 2m (7 feet) from other people
MAXIMUM 7 hours/day at 3 m (10 feet) from other people
Adam did some research on the internet. The websites each say something different but one thing is for sure. No exchange of bodily fluids. Plus, no pregnant women and no children. Not necessarily in that order.
Rain
Adam and I left the house to run a few errands. When I stepped outside, there were droplets of rain falling lightly. I smiled and revelled in the freshness. *&!$ the umbrella. It felt that good. I needed this. It felt good to be outside and to feel alive. I need to fax something. He had to buy toothpaste. I needed to get vegan food that might "turn on" my appetite. We ate at Chipotle's. I had a huge veggie burrito knowing that it would probably be the only meal I could manage for the day. (I did start the day with a smoothie and tea. I also ate fruit.) I beelined from every child under 12 and potentially pregnant woman around me.
Hair Issues
I called back my hairstylist for the last five years. (The salon he worked at closed down and I began to go to a closer salon.) My hairstylist is more than a stylist and such a soulful, creative person. I told him about my cancer. (He knew months before I had been in hospital but at the time I was not ready to reveal why.) He listened and encouraged me. "How's your hair?" he asked. I think it's thinning. There. I said it. It's true. My beautiful, glorious bush of hair. (My mom always said that God blessed me with one good head of hair.) My roots have grown in but some of my dredlocks were hanging by spindly strands looking like they were ready to snap at the root. "I trust you will do a good job. Whatever you say, I'll do it." I put my hair completely into the hands of my stylist. I will see him soon.
Monday, April 25, 2011
Radioactive Playlist 10
BUTTERFLY - India Arie
India Arie is such a gifted artist. Her songs are so fitting for different phases of what I go through in my life. Today, Easter Monday I end my isolation. The butterfly is symbolic in so many ways. The first one is obvious with the naming of this website Blue Butterfly (blue is my favourite colour). Secondly, the thyroid gland is shaped like a butterfly. I began to journal about my journey while I was in the hospital for my total thyroidectomy (removal of my thyroid). Next, this healing time, especially during the isolation when I was "cocooned" in my home and away from other people, I can emerge today like a butterfly must do from its chrysalis (cocoon). While in the cocoon, the butterfly goes through changes and transformation, like the breaking down (surgery, radiation) and healing that I am going through. Lastly, the isolation period took place over Easter weekend. For Christians, on Easter Sunday it is celebrated that Christ emerged from the tomb after being dead. He reappears to his apostles transformed and is assumed (taken up) into heaven. Easter is often symbolized by chicks emerging from eggs, animals being born in the springtime, and also butterflies exiting their cocoons. All signs of new life!
Sunday, April 24, 2011
Radioactive Playlist 9
Find TG
Aside from the fact that these amateurs butchered this song, it is funny if you understand what is Tg. Tg or thyroglobulin is the protein which is synthesized by thyroid cells. If you have a total thyroidectomy (TT or total removal of thyroid gland) and radiation like me, the surgeon and endocrinologist want to make sure as many thyroid cancer cells have been killed as possible. A good Tg result is 0. I will have my Tg levels checked periodically (through blood tests)vfor the rest of my life to ensure that there is no remnant of thyroid cells and hence no thyroid cancer. A metasteses is a spread of cancer. I have a some metasteses in my lymph nodes which is why I was a good candidate for the radiation.
Radioactive Playlist 8
Isolation by The Mighty Boosh Milky Joe & The Coconuts song
I love this British show!
Day 4 of Isolation (An Easter to Remember)
Moderator's Easter Message 2011
Lent is over and today I celebrate Easter. As I called it yesterday, this will be an Easter to remember. I'm still in isolation for one more day and then tomorrow I can see people and my cats but only at a distance. I post the Moderator's Easter Message because I am inspired by it and I found it powerful. The moderator quotes Fr. Richard Rohr who says if we don't transform pain, it is transmitted. She goes on to say that If pain is to be transformed it requires, social justice, honesty, compassion, peace, and humility. Although I have experienced pain through different aspects of my thyroid cancer journey, I wish to transform it into something positive, uplifting, healing, spiritual, and creative. For those of you celebrating Easter, I hope you are having a blessed and peaceful weekend and day. And for those not celebrating Easter, I hope you find rest and relaxation.
Saturday, April 23, 2011
Day 3 of Isolation
I wanted to post the video for the song "Love Rollercoaster" by Ohio Players for all of the directions my mood was today. It was sunny and warm (18 degrees Celsius) outside and I sat out on the backporch talking on the phone and eating spinach and oranges. I soaked it all up. I get calls on rotation from my fiance, my mom, my fiance's mom, and my friend Njeri each day sometimes a few times each day each. A call from my dad and one from my little sister. Then there are the phone calls and e-mails that pleasantly surprise me from my cousin who shares that she is pregnant with her ultrasound photos (happy radioactive tears), from a family friend who suffered a personal loss but still found time to e-mail me on the day of the funeral (tears), and friends who I don't hear from every day but who are still "there" experiencing this with me. I also cry and feel sad about the calls that don't come from folks who say they will call but don't. (Then I start to feel pathetic for crying about this.) I am having cravings for salty foods (like the root chips that my fiance left) and meat. (Thank God I made and froze those salty vegan jerk sausages as well as some fake meat cutlets.) I'm so glad that my Low Iodine Diet (LID) ends tomorrow. I miss salt!!! Real salt!!! Not fake salt!!! I want to eat restaurant food! I want ice cream!!!
I also go back on my thyroid hormone tomorrow. Since I will be on Cytomel (T3 which works within 2 weeks) and Eltroxin (T4 which takes 6 weeks to fully work), I may be hyperthyroid for a little while. But I rather be hyper than continue with "hypo hell". If I was still with Endo #1, I would have to continue my LID for another 4 days. But Endo #4 says that I can stop tomorrow. It couldn't come soon enough.
I watched the Karate Kid. So sweet. So violent. So difficult to watch at times. I almost didn't make it through the final fight scene. Jaden Smith is so talented. Also, those kung fu bullies are tough.
Tomorrow will be an Easter to remember for a number of reasons. I'm going to take the cats out of their isolation and let them roam albeit in a different level of the house than me. (Makeda, the clever orange cat, is meowing to me and sticking her paws under the door. We talk through the door. I tell her the isolation will be over soon.) It will also be one more day until my fiance comes back (Easter Monday). Although we can't even hug for another few days afterward, slowly the boundaries will shrink.)
Easter symbolizes new life for many people and personal changes sometimes coincide with the transformation that Christ made 2, 000 years ago. (See the Canadian film, RUDE directed by Clement Virgo which illustrates this perfectly.)
I will definitely be celebrating tomorrow!!!
I also go back on my thyroid hormone tomorrow. Since I will be on Cytomel (T3 which works within 2 weeks) and Eltroxin (T4 which takes 6 weeks to fully work), I may be hyperthyroid for a little while. But I rather be hyper than continue with "hypo hell". If I was still with Endo #1, I would have to continue my LID for another 4 days. But Endo #4 says that I can stop tomorrow. It couldn't come soon enough.
I watched the Karate Kid. So sweet. So violent. So difficult to watch at times. I almost didn't make it through the final fight scene. Jaden Smith is so talented. Also, those kung fu bullies are tough.
Tomorrow will be an Easter to remember for a number of reasons. I'm going to take the cats out of their isolation and let them roam albeit in a different level of the house than me. (Makeda, the clever orange cat, is meowing to me and sticking her paws under the door. We talk through the door. I tell her the isolation will be over soon.) It will also be one more day until my fiance comes back (Easter Monday). Although we can't even hug for another few days afterward, slowly the boundaries will shrink.)
Easter symbolizes new life for many people and personal changes sometimes coincide with the transformation that Christ made 2, 000 years ago. (See the Canadian film, RUDE directed by Clement Virgo which illustrates this perfectly.)
I will definitely be celebrating tomorrow!!!
Wrong Way to Hope
On Tuesday, April 19, 2011, two days before my radioactive isolation, I attended a screening of a film called "Wrong Way to Hope". (Visit their website at: http://www.wrongwaytohope.com). I remember that day as intense. First of all, I was exhausted from the little sleep I had the night before and from being so hypo. I had also had an appointment with my new specialist, a blood test, and a counselling appointment. Plus I was trying to plan a trip to Newfoundland for the healing retreat without any idea of how I was going to pay the new higher plane fare without my AirMiles. (The healing retreat is being organized by Young Adult Cancer Canada: http://www.youngadultcancer.ca). I could have easily gone to bed and curled up and hibernated but, me thought, 'No, I must go.' And go, I did. Well, more like dragged my "hypo" self on to the bus...
The screening was held at Wellspring (Westkirk House at Sunnybrook), the cancer support centre. I wanted to see this screening especially since it was about the adventure trip that young adult cancer survivors took up a river in Oregon, USA. The trip was organized by Mike (cancer survivor) and Bonnie Lang (his wife and supporter). I especially wanted to be at this screening since I wanted to meet other young adult cancer survivors. Finding a young adult cancer patient or survivor is kind of like finding a needle in a haystack. We are so small in number that we are an underserved population in terms of services. In almost all of the workshops, yoga classes, and groups I attend, I am the youngest participant by several years. (I am 33 years old.) So that means many of the young adult cancer patients and survivors are not being served adding to feelings of isolation. I have felt this isolation too. Although I have many loved ones around me, I genuinely seek other people who have faced or are facing cancer. They completely get it!
What's even more sad is that if you have a lengthy cancer treatment (e.g., multiple surgeries, multiple rounds of chemotherapy and radiation that can last months and years), I can only imagine the intensity and length of this isolation. This issue and others were expressed by the survivors in the film. Changes to relationships, identity, and transitions all had a part to play in their cancer journey.
I commend Mike and Bonnie Lang for tackling these issues in their film and for organizing a national tour of the film along with Pat Taylor, producer/director of Chasing Rainbows productions. (You can visit her website at: http://www.chasingrainbowsproduction.com). Organizing a national film tour is a lot of work but very rewarding. (I should know. I organized a nationally touring film festival called ICED IN BLACK: Canadian Black Experiences on Film in 2002 and 2003.)
I am so happy I attended. First, I learned more about the community and support for young adults with cancer. Second, I connected with an anonymous donour to help me pay for my flight to attend the healing retreat in Newfoundland (see my post "Love, Medicine, and Miracles"). I'm so excited to go. Newfoundland will be my 9th province visited. (There are 10 provinces in Canada so Prince Edward Island will be next.)
Pat Taylor (left, Chasing Rainbows), me, and Mike Lang (right, adventure therapy facilitator/cancer survivor/Wrong Way to Hope)
Peter Laneas (left, National Spokesperson, The Canadian Testicular Cancer Association/cancer survivor), Pat Taylor, me, and Mike Lang
Pacman gameplay
This is how I envision the radioactive iodine (I-131) attacking the thyroid cancer cells in my body. In "Love, Medicine, and Miracles" by Bernie Siegel, MD (see my review of this book in my post, Book Reviews), he said that it is helpful to have an image of the cancer healing in your body. Some people envision a war. Others envision a vacuum aspirating or a broom sweeping out dust. I fell in love with the Pacman image. (I'm a child of the 1980s.)
Friday, April 22, 2011
Day 2 of Isolation
Update: Very basic last two days. Drank lots of water to flush my system. Flush the toilet three times. Twice daily showers and hair rinses. Laundering all of my radioactive clothes, towels, and linens. Eating (but I have no appetite really) but I'm making myself eat. I don't have much energy but I do have some to talk on the phone. I also have energy to blog and write. Otherwise, I am very sleepy. Some swelling in my inner cheek. A little cramping here and there. I cooked some stew last night (felt like a zombie doing it) since I was tired of eating the same thing. My food tastes a little bland but using more Windsor coarse salt. Meditated and prayed a bit. Read a little bit. Watched movie in chunks since I kept on falling asleep. The cats are okay. Two more days!
Radioactive Plalylist 7
Little Roy - Tribal War - Reggae
This song is in my head too. Although I want the radiation to kill the cancer in my body, I want "the war" in my body to be over so there can be harmony and balance.
Radioactive Plalylist 6
Nicki Minaj - Massive Attack ft. Sean Garrett
The radioactive iodine is launching a massive attack on my thyroid cancer cells.
Thursday, April 21, 2011
Radioactive Playlist 5
Janelle Monae - Cold War [Official Music Video]
I am listening to my new Janelle Monae CD and heard this song. So fitting for how I feel right now.
Love, Medicine, and Miracles
I named this post after the title of a book by Dr. Bernie Siegel because I feel that throughout my illness and recovery, I have seen evidence of these. Siegel feels that these are all necessary to recover from cancer. I have seen this manifest in different ways. I am amazed that I have even witnessed a miracle. It is easy to forget that miracles can take place in this modern age and time, my friend Nadine reminded me weeks ago. Well, it's true.
Love
Love for me can take many forms. In this context, I have seen it in three ways. First, I have seen it in the prayers of those around me. Prayers from my family, friends, and church community as well as prayers from co-workers and even strangers. When someone prays for you, it's like they are saying I care about you enough to take a moment to think about you and ask God to have favour on your circumstance. It says, I love you. That's huge! I appreciate every prayer that has been said. I draw strength from these as well as from my own prayers. Next there is demonstrative love. I have seen generosity in a number of ways. I was so touched when my sister with her young family (husband and baby in tow) flew to Toronto to be with me for moral support. When she told me she would come, I told her that it wasn't necessary. (Too much to ask, I thought.) But this visit meant a lot to me and took the form of daily visits. Although, I just had surgery and had a longer than expected hospital stay, I got to hold and cherish my nephew and in those moments I did not remember that I had a stiff neck or dizziness or fatigue. My phone was ringing a lot in the weeks to follow as I heard from cousins, friends, relatives, coworkers, and my mother (twice and sometimes three times daily). My mother-in-law to be is also dealing with illness so we were able to call each other during the day to provide mutual support. Each week I had a few visits from friends which lifted my spirits with our jokes and laughter. Then there is my fiance who saw me daily and although I had bloody scar and surgical tape on my neck and dry, pale skin, said I looked so cute in my blue pyjamas. He put up with my mood swings from exhausted and dizzy to hyperthyroid to "hypo hell". My mother who came over two times (not the end I am sure) to clean our apartment with her efficiency, zeal, and ferosity. My dad who fixed things and drove me to some of my appointments. My older brother who listened and provided a shoulder to cry on two days before my surgery when I was so afraid. And my baby sister who helped me to celebrate Valentine's day with chocolates and novelty gifts. Flowers, cards, and stuffed toys. Njeri with her phone calls and a gift of a juicer. Encouraging e-mails. A phone call in with my kindergarten students filled with "I love you" and "When are you coming back?" In these and so many ways, I have seen love demonstrated. Then there is the community. Church people who I did not know well but offered to help. One offered a therapeutic touch session. Another provided conversation and an ear to hear the ups and downs of my illness. My pastor who regularly checks in. Community is rich and necessary. This is why I felt at some point that I needed to reach out to other cancer patients and survivors. I started to go to Wellspring for support. After I began to speak with other cancer patients and survivors, I felt this weight begin to lift off my shoulders. I did not have to keep this a secret and the word cancer stopped scaring me. In fact, I felt stronger each day. From my first visualization/meditation class to the very intense yoga, I realized the fierceness and strength of being a cancer patient/survivor. I go to Wellspring a few times each week to participate in workshops as well to learn about cancer prevention. I am participating in their creative workshops too. The cancer survivors and patients I have met are ready to share their stories and I am always inspired by them. I feel blessed.
Medicine
Without saying much, medicine has been a huge part of my journey. Medicine has taken the forms of the customary treatment for thyroid cancer: diagnosis, surgery, thyroid hormone replacement, and radioactive iodine ablation. But I have learned and practiced other forms of healing. Naturopathy has helped in preparing for the surgery and follow-up. The homeopathics and different products help to encourage my body's own healing response. Yoga and meditation helped me to still my mind, decrease my anxiety, and increase my positivity. Reiki and therapeutic touch were both new to me and provide balance and clarity. My own self-directed healing comes from food, books, and creativity. Food which is a source of medicine with its vitamins and minerals, antioxidants, and other healing properties. (You can see my Vegan Photo Album and Living La Vega(n) Loca posts). The books and magazines which I am reading have provided excellent sources of information regarding healing, veganism, and recipes/nutrition. (Please see my Book Reviews.) I've started going to counselling again to help me process all of the issues that are coming out of my journey. Lastly, creativity has helped me in my healing journey through art, journalling, blogging, and music. Although I have not done too much musicmaking (except learning a couple guitar chords and playing Motown and Erykah Badu songs on the piano) recently, I find healing in listening to uplifting songs. Right now, it's all about the roots reggae so my online radio is locked to SKY.FM.
Miracles
I find that miracles have been part of this journey too. Maybe you wouldn't call them all miracles but I do. When the unexpected happens or you're at the right place at the right time and things fall into place, it is easy to take these for granted and disregard it. The first miracle I had was meeting Woody Harrelson (please see my post Living La Vega(n) Loca). I am not a huge fan of Harrelson but I've become one. Since my surgery, I read Alicia Silverstone's book which inspired my veganism and Alicia was inspired by his lifestyle and activism to become Vegan. Also I had watched three of his films-- Zombieland, Defendor, and Go Further. So imagine my shock, when I saw him and met him. Another miracle came with my health. Most thyroid cancer patients stay for 2 days in hospital. I stayed for 4 days because I had hypocalcemia. Hypocalcemia is caused by a lack of calcium in the blood. Calcium is an electrolyte which promotes normal functions in the body (especially the heart). You can survive weeks and weeks without a thyroid (although you would be in "hypo hell") but cannot survive without calcium. My calcium levels were extremely low. The cause of my hypocalcemia was the removal of my 3 out of 4 of my parathyroid glands. Parathyroid glands help to regulate calcium levels in the blood and I had one of these glands. Only thing my gland was not working because it had to be moved during the operation and reimplanted. So with calcium pills and intravenously, it took four days for my calcium levels to get to a normal level so that I could leave the hospital. For the next several weeks after, I had to take very high doses of calcium carbonate (3 times daily) and Rocaltrol (an expensive medication) until my parathyroids could work. I'm happy to say that two months later, my parathyroid gland did work and I do not have to take these anymore. Also, after struggling to find a new endocrinologist (see my post The Best Cancer or A Tale of 4 Endos) without any effort on my part, I was transferred to Endo #4 (this was another miracle) who said it was safe enough for me to fly next week. This meant that I would be able to attend a healing retreat for young adults with cancer. So when I e-mailed Young Adult Cancer Canada (YACC), they still had a space available. Since it was so last minute, the prices of the flights had gone up and my AirMiles would not cover it. The miracle came when a person said they wanted to help me that same day. She wished to remain anonymous and is paying for half of my ticket. I've never had a stranger want to help me in such a big way. I asked her if I could mention this donour on my blog and what this donour wanted for this donation. The answer: to know how the retreat was for me and to "play it forward". Amazing!!!!
I will continue to add to this post from time to time as I see evidence of love, medicine, and miracles in my healing journey.
Love
Love for me can take many forms. In this context, I have seen it in three ways. First, I have seen it in the prayers of those around me. Prayers from my family, friends, and church community as well as prayers from co-workers and even strangers. When someone prays for you, it's like they are saying I care about you enough to take a moment to think about you and ask God to have favour on your circumstance. It says, I love you. That's huge! I appreciate every prayer that has been said. I draw strength from these as well as from my own prayers. Next there is demonstrative love. I have seen generosity in a number of ways. I was so touched when my sister with her young family (husband and baby in tow) flew to Toronto to be with me for moral support. When she told me she would come, I told her that it wasn't necessary. (Too much to ask, I thought.) But this visit meant a lot to me and took the form of daily visits. Although, I just had surgery and had a longer than expected hospital stay, I got to hold and cherish my nephew and in those moments I did not remember that I had a stiff neck or dizziness or fatigue. My phone was ringing a lot in the weeks to follow as I heard from cousins, friends, relatives, coworkers, and my mother (twice and sometimes three times daily). My mother-in-law to be is also dealing with illness so we were able to call each other during the day to provide mutual support. Each week I had a few visits from friends which lifted my spirits with our jokes and laughter. Then there is my fiance who saw me daily and although I had bloody scar and surgical tape on my neck and dry, pale skin, said I looked so cute in my blue pyjamas. He put up with my mood swings from exhausted and dizzy to hyperthyroid to "hypo hell". My mother who came over two times (not the end I am sure) to clean our apartment with her efficiency, zeal, and ferosity. My dad who fixed things and drove me to some of my appointments. My older brother who listened and provided a shoulder to cry on two days before my surgery when I was so afraid. And my baby sister who helped me to celebrate Valentine's day with chocolates and novelty gifts. Flowers, cards, and stuffed toys. Njeri with her phone calls and a gift of a juicer. Encouraging e-mails. A phone call in with my kindergarten students filled with "I love you" and "When are you coming back?" In these and so many ways, I have seen love demonstrated. Then there is the community. Church people who I did not know well but offered to help. One offered a therapeutic touch session. Another provided conversation and an ear to hear the ups and downs of my illness. My pastor who regularly checks in. Community is rich and necessary. This is why I felt at some point that I needed to reach out to other cancer patients and survivors. I started to go to Wellspring for support. After I began to speak with other cancer patients and survivors, I felt this weight begin to lift off my shoulders. I did not have to keep this a secret and the word cancer stopped scaring me. In fact, I felt stronger each day. From my first visualization/meditation class to the very intense yoga, I realized the fierceness and strength of being a cancer patient/survivor. I go to Wellspring a few times each week to participate in workshops as well to learn about cancer prevention. I am participating in their creative workshops too. The cancer survivors and patients I have met are ready to share their stories and I am always inspired by them. I feel blessed.
Medicine
Without saying much, medicine has been a huge part of my journey. Medicine has taken the forms of the customary treatment for thyroid cancer: diagnosis, surgery, thyroid hormone replacement, and radioactive iodine ablation. But I have learned and practiced other forms of healing. Naturopathy has helped in preparing for the surgery and follow-up. The homeopathics and different products help to encourage my body's own healing response. Yoga and meditation helped me to still my mind, decrease my anxiety, and increase my positivity. Reiki and therapeutic touch were both new to me and provide balance and clarity. My own self-directed healing comes from food, books, and creativity. Food which is a source of medicine with its vitamins and minerals, antioxidants, and other healing properties. (You can see my Vegan Photo Album and Living La Vega(n) Loca posts). The books and magazines which I am reading have provided excellent sources of information regarding healing, veganism, and recipes/nutrition. (Please see my Book Reviews.) I've started going to counselling again to help me process all of the issues that are coming out of my journey. Lastly, creativity has helped me in my healing journey through art, journalling, blogging, and music. Although I have not done too much musicmaking (except learning a couple guitar chords and playing Motown and Erykah Badu songs on the piano) recently, I find healing in listening to uplifting songs. Right now, it's all about the roots reggae so my online radio is locked to SKY.FM.
Miracles
I find that miracles have been part of this journey too. Maybe you wouldn't call them all miracles but I do. When the unexpected happens or you're at the right place at the right time and things fall into place, it is easy to take these for granted and disregard it. The first miracle I had was meeting Woody Harrelson (please see my post Living La Vega(n) Loca). I am not a huge fan of Harrelson but I've become one. Since my surgery, I read Alicia Silverstone's book which inspired my veganism and Alicia was inspired by his lifestyle and activism to become Vegan. Also I had watched three of his films-- Zombieland, Defendor, and Go Further. So imagine my shock, when I saw him and met him. Another miracle came with my health. Most thyroid cancer patients stay for 2 days in hospital. I stayed for 4 days because I had hypocalcemia. Hypocalcemia is caused by a lack of calcium in the blood. Calcium is an electrolyte which promotes normal functions in the body (especially the heart). You can survive weeks and weeks without a thyroid (although you would be in "hypo hell") but cannot survive without calcium. My calcium levels were extremely low. The cause of my hypocalcemia was the removal of my 3 out of 4 of my parathyroid glands. Parathyroid glands help to regulate calcium levels in the blood and I had one of these glands. Only thing my gland was not working because it had to be moved during the operation and reimplanted. So with calcium pills and intravenously, it took four days for my calcium levels to get to a normal level so that I could leave the hospital. For the next several weeks after, I had to take very high doses of calcium carbonate (3 times daily) and Rocaltrol (an expensive medication) until my parathyroids could work. I'm happy to say that two months later, my parathyroid gland did work and I do not have to take these anymore. Also, after struggling to find a new endocrinologist (see my post The Best Cancer or A Tale of 4 Endos) without any effort on my part, I was transferred to Endo #4 (this was another miracle) who said it was safe enough for me to fly next week. This meant that I would be able to attend a healing retreat for young adults with cancer. So when I e-mailed Young Adult Cancer Canada (YACC), they still had a space available. Since it was so last minute, the prices of the flights had gone up and my AirMiles would not cover it. The miracle came when a person said they wanted to help me that same day. She wished to remain anonymous and is paying for half of my ticket. I've never had a stranger want to help me in such a big way. I asked her if I could mention this donour on my blog and what this donour wanted for this donation. The answer: to know how the retreat was for me and to "play it forward". Amazing!!!!
I will continue to add to this post from time to time as I see evidence of love, medicine, and miracles in my healing journey.
Day 1 of Isolation (Radioactive Iodine Ablation in Photos)
The night before the RAI. It's finally here. I look tired (exhausted really) but I'm up for anything including finding out when I opened my mail at 10:30pm to find my driver's license was suspended. (I sent my ticket payment last week which I didn't know about since they sent the warning notice to my parents' house. The deadline had passed by the time I got it. Grrrr! I will have to fight that one after isolation. It would be too late to notify the hospital to arrange to do my isolation there.)
Breakfast of champions! I drink my four food groups (kale, banana, mixed berries, rice milk, flax seeds, oats, almond butter).
Kitty cats have thyroids too. That's why they're in isolation in the music room. Marcus seems a little shocked.
Makeda does not seem to mind.
Somehow I get to the hospital. This sign greets me at the Nuclear Medicine department.
Am I in the right place? The staff seem to think so.
I love getting presents especially when they are packaged in metal lead containers. All this trouble for me...
Did I read that correctly?
No, that wasn't a misprint.
My specialist, Endo #4, comes in, puts on a lead vest, and starts to unpack the contents of the container. He doesn't seem so serious today. In fact, he is smiling and his face is rosy. (Maybe he's happy about the long weekend.) I tell him that I have a blog and ask if I could take a photo of the pill. He looks at me with raised eyebrows. I guess that's a no. "It's a time sensitive thing, isn't it?" I ask. He nods.
The pill was a white capsule in a little container. (I was a little disappointed. It wasn't glowing green or anything. Just a regular inconspicuous pill.) I turn the container upside down into my mouth and swallowed the pill. The little container was packed with a lead weight on top and foam on the sides inside of that metal in the second insulated metal box that you see (with wheels). I'm officially radioactive!!!
After a long wait, I'm escorted out by hospital staff and then a security guard takes me to my reserved elevator. He says to hold the close button. I hold the close button all the way down to the ground floor. There are two security guards there trying to hold back a crowd of people. I'm supposed to avoid people especially children and pregnant women and I can't see a path to walk. "Where do I walk?" I ask. "Just go through," one guard says. I beeline for the hospital exit. I open the door and see a couple coming in at the other end. I look down at the woman's stomach. She's pregnant. (They did not plan this out very well.) I back away as the couple goes through.
I'm a danger to the public. I'm Radioactive girl!
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I drive myself home. (There was no other option. Too radioactive to cab it or take the bus. My dad was concerned about radioactive exposure so he couldn't drive me. My fiance couldn't drive me since my sports car would have us sitting together for too long. So I had to drive my hypo radioactive suspended-license self. I whisper a prayer and drive home.)
My last sight of my fiance.
He told me on the phone that Makeda, our brilliant orange cat, escaped isolation twice so he figured out a plan to get her to stay inside the music room.
That should keep her.
And this one should keep me.
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