Name: Nadia Hohn
Hometown: Toronto, ON
What schools did you attend? York University, University of Waterloo, Ontario Institute for Studies in Education at the University of Toronto (OISE/UT)
Do you work? Yes but I am currently on leave.
What are your career goals?
My career goal is to be a published in writing especially as a children’s author/illustrator and a young adult writer hope to promote health and wellness in my lifestyle perhaps by opening up a business. I envision a vegan café/space that promotes health, family, arts, and learning. I would like to do another research degree (either an MA or PhD) in the cultural of the African diaspora, expressive arts therapy, or a combination of the two. I would like to plan workshops, healing retreats, and classes, in addition to presenting my books.
Your Cancer experience:
How did you find out you were sick? What led to the diagnosis?
My doctor discovered a nodule (lump) in my neck during my annual physical exam. She said it was probably benign. She told me to get an ultrasound done but apparently I do not remember any of this since I had my physical the same week I got engaged. I guess I was still elated and my head was in another place.
Two months later when I went to my doctor to pick up a prescription, she asked me if I went for my ultrasound. I said, “What ultrasound?” So I went for my ultrasound the next day. They found four nodules in the ultrasound. Two months later, I had a fine needle aspiration to biopsy the largest nodule. They decided to do three that day (very painful with no anesthetic). Less than one week later, I got a call. (By then, I had a strong feeling that it was cancer.) I went to see my doctor the following week and she said that one of the lumps was definitely cancer and another one showed abnormal cells.
I did not think I had 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 went to the doctor and my hormone levels (T3 and T4) were normal. However, I have always had low blood iron (borderline anemia) so I would attribute 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 as a teacher. I did not see a lump but I do recall sometimes feeling like my throat felt tight. Again, I thought this was stress-related.
What was your diagnosis?
Papillary Thyroid Carcinoma, Stage 1 (this is my staging since I am under age 44 and have had no spread outside of my thyroid and lymph nodes).
What year was it? What was your age at the time?
November 19, 2010, I was 33-years-old.
In which hospital were you treated?
North York General Hospital
At what level of education were you at diagnosis?
I had my Honour’s Bachelors of Art in Psychology, Bachelor of Education, and Master’s of Education at the time of diagnosis.
What were your first thoughts when diagnosed?
There was a part of me that was sad. It’s cancer! And then there was another part of me that was a bit relieved to be forced to take time out off for surgery. Before cancer, I lived an intensely busy lifestyle and I knew that the “time out” that cancer would provide me was needed.
How did your family react?
My parents were concerned. One of my sisters became quite upset that she could not be here with me while I went through the diagnosis and treatment (she lives out of town.) Some of my relatives reached out to me.
How did your friends react? Were you treated any differently?
My friends were generally supportive. No one got emotional, and were very rational. They tended to be calm and when I told them about thyroid cancer, they seemed to be relieved that there was such a high recovery rate.
What did your treatment consist of?
I had surgery: A total thyroidectomy (removal of the whole thyroid gland). Due to where my four parathyroid glands were situated, I had three of those removed and one re-implanted, which caused it to stop functioning. Since the parathyroid gland is responsible for regulating calcium, I had transient hypocalcemia (very low calcium levels) as well. As a result, I was hospitalized for four days and take had to take loads of calcium.
After two months, my only parathyroid gland began to work and now my calcium levels are back to normal. During the surgery, they also removed six lymph nodes and cancer was present in three, so I was an ideal candidate for Radioactive Iodine (RAI).
After surgery, I was given thyroid replacement hormone (Cytomel). To prepare for it, I had to go on a special diet called the Low Iodine Diet (LID) so there were a lot of foods I couldn’t eat for two weeks prior to RAI and four days afterwards. Also, I had to “go hypo” or hypothyroid and stop taking my Cytomel for two weeks prior to RAI and four days after (since Thyrogen, a medication, was not available). I also began a different thyroid hormone called Eltroxin after RAI as well.
“Going hypo” was very challenging since I felt even more tired and sluggish than ever, could not do much, and was not permitted to drive. Also during RAI, I had to be in isolation for four days. I chose to do my isolation at home so my fiancé had to leave the house, I could not be around my cats, and I had to stay away from all people during this period of radioactivity. There were also other regulations like taking lots of baths and washing my hair as well as flushing the toilet three times.
Two weeks later, I had a whole body scan to see if the cancer spread to other areas of my body. There are also follow-up blood tests and monitoring by an endocrinologist to ensure that thyroid levels are appropriate and there is no spread of the cancer.
Describe the non-medical side (how you felt physically and emotionally, side effects)
The thyroid is responsible for so many things: energy management, protein production, etc. I felt that there were a lot of different side effects attributed to the different aspects of treatment: surgery, thyroid hormone replacement, “going hypo,” and radiation. I will give a few examples. For a few weeks, I was hyperthyroid (overactive thyroid hormone) so I felt shaky, had hot flashes, heart palpitations, and difficulty sleeping. Then when I went hypo and as I adjust to my thyroid hormone currently, I feel tired, sluggish, depressed, and slow. I am still recovering from the hypo. Each day is so different in terms of how I am feeling. I think the strangest side effect I had was cold sores in my nose. I have never had cold sores anywhere and then I had this stuff in my nose, it was painful and hard to breathe but they went away after two weeks.
What is your current medical status?
The whole body scan showed that the cancer has not spread outside of the thyroid bed that is great news. It also showed that there is still some activity in the thyroid bed that they do not know still if the radiation is fighting leftover healthy thyroid cells or cancer cells. Follow-up blood tests will determine if future radiation or adjustments to my thyroid hormone levels are required. My endocrinologist says that I am in a low-risk group so chances are good that I will not require more radiation.
How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
I am much more aware now of what I need to feel more balanced, happy, and healthy. My cancer journey led me to changing my diet and I became a vegan a few months ago. I have begun to express more of what my needs are with my friends, family, and fiancé. I do not take my cancer for granted. I am trying to learn as much as I can from this experience. I am learning so many lessons and take less for granted. I am much more in tune with my feelings and learning to express them more freely. I spend much more time writing and cooking than I ever have. I am also changing my lifestyle and habits to reflect a kinder and more compassionate existence towards myself.
What was the toughest part of your challenge?
The surgery and side effects were tough but seem small when compared with other challenges I faced. All of the bureaucracy, forms, letter writing, and phone calls. Especially what I had to go through with getting an expensive medication that would have prevented me from “going hypo” and hence experiencing the related side effects. Also, trying to get a second opinion about radiation was an ordeal. I went through the opinions of four endocrinologists and referrals and this took a long time. Also sick benefits from the government resulted in a 60 per cent reduction in my income. 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 has been exhausting.
What is/was the best part of your challenge?
My life was changed hugely and in positive ways. First, I changed my diet and became a vegan. I have begun to see food as medicine. I am becoming a vegan chef and preparing the best foods to nourish my body. This has led me to read more books about nutrition and healing and reach out into the community more.
Also, I do not take life and, very importantly, myself for granted. All of my dreams and aspirations, my self-care have become more of a priority for me. I also have become more mindful and expressive about my feelings. 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 have also had a lot more time to write now and I am getting a better sense of what I need to be happy. Lastly, I learned a lot about my own inner strength and resilience.
What really motivates you to keep going?
All the wonderful things that life has to offer me. My faith has helped me a lot. I know that there is a lot to learn and I need to let my voice be heard. I know things will get better. Journaling and writing on my blog (Blue Butterfly) as well as cooking new foods (preparing them, photographing them, etc.) are activities that keep me the most motivated.
What lessons or messages have you taken away from your experience?
I have learned a lot of lessons from this experience include letting go, listening to the body, and not putting off what needs to be done today. Also, I have thought more about mortality and that our time on Earth is precious and limited so I do not want to waste it. Do what makes you happy.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Since my diagnosis, I am not afraid to say the word “Cancer” any more. I am not afraid to let people know that I have cancer. I learned that I did not cause my illness. I see cancer as a gift, a reminder that life is short so enjoy it.
What are some (if any) preventative measures that people can take to lower their risk of having an experience like yours?
Firstly, know that thyroid cancer is the fastest growing cancer in the world, as well as the most common cancer in young women. Avoid radiation exposure. When you go for x-rays, make sure your technician gives you a thyroid guard. Ask your family members if there is a history of thyroid cancer so you know if you have a genetic risk. Watch for symptoms like fatigue, tight throat, change in voice, etc. Most importantly, get an annual physical and make sure your doctor checks your thyroid. Dr. Oz has a test to check your thyroid as well. Have a good “rainy day” (emergency) fund. Also, live healthfully to reduce cancer growths by doing things like eating well, reducing stress, and exercise.
Did you attend any support groups during your challenge?
Yes, I joined Thyroid Cancer Canada quite early in my diagnosis and they sent me a detailed information package. (At that time, I did not tell many people that I had thyroid cancer and I was still afraid of the word “Cancer.”)
Months later, I guess it was frustration and isolation that got me to the place when I was ready to reach out. I did internet searches and learned about YACC as well as Wellspring. I attended the YACC Retreat in Newfoundland this year and it was very helpful. Before going to Wellspring, I was nervous and thought I’d see a lot of sickness however I was pleasantly surprised. I attended my first yoga class there and found it very challenging yet the people around me (some were chemo patients, others further along their journeys) were so inspiring, strong, and healthy looking. I also took a few classes (writing, art therapy, Healing Journey) and did some activities like cooking workshops and yoga. These have been very helpful to me.
How are you connected with Young Adult Cancer Canada?
I was a participant in the YACC Retreat Yourself East 2011 in Rocky Harbour, NL this year. I found YACC on the Internet and through advertisements at Wellspring. I found the retreat to be a beautiful experience. I loved being outside in nature and connecting with so many cancer patients and survivors. They really “got” what I was going through.