2011 Year in Review

Like Stephanie who writes the 100 Cancer Resolutions blog and unlike every new year since I was about 12 years old, I decided not to write resolutions for 2012. With the Funky Sexy Manifesto and the gazillion to-do lists I create on a daily basis, there were enough things to resolve. Instead, I am going to take a tip from Kris Carr of Crazy Sexy Life and write my own Year in Review. (If you search some of these items, you will find that I blogged about them. All blogged about items are marked with an asterisk *.

My 2011 began with a vision which can be best expressed with this Visioning Board/Collage. I created this board a few days before my surgery to depict how I wanted to go through this cancer journey. I wanted to go through it with strength, resilience, confidence, healthiness, grace, creativity, and tenacity. Whenever I needed a healing inspiration, these images and words were helped me on the way.


January
- took a sick leave from my full-time teaching job to prepare for my surgery
- got sick with a bad cold the week before my surgery so I ended up taking off sooner
- I had surgery to remove my thyroid gland (total thyroidectomy) and 3 parathyroid glands which resulted in a longer hospital stay due to hypocalcemia (low calcium levels) *
- my one remaining parathyroid gland kicked in a few months later and my calcium levels are back to normal *









February
- started attending CANSCAIP (Canadian Society of Children's Authors, Illustrators, and Performers) monthly meetings only two weeks after my surgery (Boy, was I crazy!)
- healing, reading, journaling, and cooking
- where is Thyrogen? *




March
- healing, reading, journaling, cooking, and crying
- where the hell is Thyrogen? *
- getting second and third opinions
- became vegan for Lent and now Vegan 4 Life *



April
- where is the blasted Thyrogen?
- created Blue Butterfly blog *
- began the low iodine diet (LID) to prepare for my radioactive iodine (RAI) while being vegan (Aaaahhhh!!! That's a scream by the way.) *
- I swallowed the pill of RAI administered and I was in radioactive isolation for four days over the Easter weekend *


- went to court to appeal decision on my sick benefits *
- began to reach out and get support from this journey by attending groups, classes, and workshops through Wellspring Cancer Support Centre and other organizations *




May
- attended the Young Adult Cancer Canada Retreat East 2011 in Gros Morne Park, Newfoundland *

- visited Ottawa with my sister
- did my whole body scan *





June
- reintroduced regular exercise in my recovery (Fuck you cancer!) *

- writing articles for Karma Food Co-op Bulletin (I'm writing articles, again!)
- entered the Burrito Bonanza Contest that was organized by Vida Vegan Con Conference and lost *

- wrote my first Vex in the City vegan restaurant review *





July
- visited Montreal with friends *

- visited New York City with my fiance and got to see family and relatives *

- got my whole body scan results which showed no spread (Yay!!!) so I think this means I am technically in remission. I began the journey of survivorship as well as lots of medical follow-up *




August
- organized I CanSurvive Picnic to celebrate the results of my scan, celebrate my birthday, and raise money for Young Adult Cancer Canada (YACC) *

- start of my Funky Sexy Manifesto (Survivor Resolutions) *
- began to get injections for Meaty (my keloid TT scar) to shrink him down and began a series of Meaty posts *

- attended a writing retreat *





September
- moved my sister into her dorm room in Ottawa

- applied to Master of Fine Arts (MFA) in Creative Writing at the University of British Columbia (UBC) *
- after a short return to full-time work (my day job is a teacher) in September, decided to continue part-time for health reasons

- did my first speaking engagement at Satisfying Her Soul *






October
- Voice Therapy *
- begun a course, Writing for Children Part 2
- did my second speaking engagement at the Art for Cancer Foundation Gala *
- raised money for Wellspring by running a 5K of Scotiabank Waterfront Marathon*

- fundraising bake sale for Young Adult Cancer Canada (YACC) Climb *






November
- attend the Young Adult Cancer Canada (YACC) Survivors' Conference in Ottawa, ON *





December
- went to court to challenge traffic ticket and cop did not show up *
- was asked by Thyroid Cancer Canada (TCC) to be their new News Editor and Newsletter Committee Chair. I accepted.

- found out I didn't get into the MFA but will apply to other programs in 2012 *

What a busy year! Lots to look forward to in 2012. Stay tuned...

E-mails to Blue Butterfly #1

I received an e-mail from Brenda telling me about her escapades with Thyrogen and the reluctant insurance companies. I thought that her e-mail would be so helpful for ThyCa patients and survivors. She said yes!!! Read how my girl wrangled and maneuvered to get Thyrogen covered by her insurance companies. Had I known these steps or tried these steps, it might have saved me some valuable wait times so that I could have got Thyrogen covered in February 2011 instead of finding out that it wasn't in April when it was totally "out of stock" in Canada. As a result, my Endo #1 and I decided to "go hypo" and complete my Radioactive Iodine Ablation in April 2011

When I wrote in my post Polkaroo? Was Here? Didn't Miss Him This Time., 'What about the thyroid cancer patients who have to wait or are still waiting?', people like Brenda who are now "in the midst" of the uncertain wait time for this medication. (First, Genzyme Canada, the company that makes Thyrogen, said May, then June, then July, now it is uncertain throughout the rest of 2011 and 2012.) Bummer! I totally feel for Brenda. She represents the thousands of Thy'Ca patients who can't access Thyrogen and the very few who did manage to get the cost covered by insurance.

Thank you Brenda for sending me this e-mail. (I love e-mails!!!! I always get a surprise.) I loved this one so much that I decided to post it. You too can tell me your Butterfly Tale, about your waltz into Thyrogen-land, helpful tips, or just to say "hi". Click here to contact Blue Butterfly.

Read on here to learn about Brenda's story.

My name is Brenda and I live in southern Ontario. I was diagnosed with thyroid cancer in March when the smaller of my two nodules showed suspicion for papillary carcinoma from testing by needle biopsy. The surgeon said definitively that it was cancer and I had surgery to remove my thyroid in the end of June.

I will have the Radioactive Iodine treatment in September. I was very hopeful that I would be able to secure thyrogen for the treatment but I was fourth on my endocrinoligist's treatment list and she was only able to secure for the first two people when thyrogen became available for that one day in mid July. As the cancer was also in some of the lymphnodes in my neck (which were removed during the surgery), my endocrinologist doesn't recommend waiting past mid September for the thyrogen to come available. I understand this will be a miracle of sorts if it does become available anytime the rest of this year. I am on a waiting list but there isn't much hope given Genzyme has basically said that shortages will continue until 2012.

As a result I will be preparing for the treatment by going off my thyroid medication three weeks before the RAI treatment. I am quite upset about having to go 'hypo'. Besides putting my mind and body through what I have heard is pretty hellish, I will also miss several weeks of work which will have a financial impact. Fortunately I do have a very supportive employer. I find it very frustrating that thyrogen is not available as it would make such a difference in my life and that of the many others currently off thyroid meds to prepare for the RAI treatment.

I would like to share my experiences in regards to my insurance company, I work in Human Resources and I am very familiar with my benefit plan. Prior to contacting the insurance company I reviewed the plan and did not see any exclusions on drugs such as thyrogen. I then contacted the customer service line. The agent told me that 'thyrogen is not covered'. I insisted that there were not exclusions such as this on my plan. The agent then said that I had to have my doctor fill out a drug exception form to be considered for coverage. I went through this process but did not hear anything back from the insurance company.

In the meantime, I had my colleague in HR, (who is our benefits administrator) contact the customer service specialist who she deals with at our insurance company. She was immediately told that the drug thyrogen was covered and that there wasn't even a requirement for the drug exception form to be completed. I too spoke to our company's insurance customer service specialist who re-confirmed that it is covered. The exception drug form was used a few years ago for thyrogen but for the past couple of years there has been no restrictions on the coverage of thyrogen. It is commonly covered by insurance companies in Ontario. Even the cost of $1600 for the drug is not an issue for coverage. Our specialist could not explain why the general customer service line would have told me incorrect information. He thought perhaps it was a training issue.

The story does not end there... Part of the process to register with Genzyme for the thyrogen is for a rep from the Thyrogen Support Program to contact you and to have a three-way phone conversation with you and your insurance carrier to confirm the coverage. Even though I knew that the thyrogen was not going to be available I still went through this process. When the rep from Genzyme and I called our insurance company, the customer service agent told us that 'thyrogen was not covered by my plan'. I had to argue with her for quite a while to get her to double check this information as it was incorrect. She finally came back and said that thyrogen was covered and that she had made a mistake in entering my plan number. This I know was a lie as she had verified my plan number and information at the beginning of the phone call.

Both the Genzyme Rep and myself were stunned by receiving the incorrect information from customer service rep. The rep had been so insistent that it was not covered and I had to really push her to go to a supervisor to verify the coverage of the drug. The Genzyme Rep said that some of the insurance companies are very difficult to deal with.

Having been told twice by customer service that thyrogen was not covered, to me cannot be explained away by poor customer service or lack of training. It makes me think that this may be a common practice with insurance companies to dissuade use of expensive drugs. Who knows? Customer service did not seem to have the information readily available and I don't understand why. Do they not have up to date information on their computers? In the end it doesn't really matter since the thyrogen isn't available anyways but insurance companies shouldn't be allowed to get any with pulling this kind of thing, particularly when people requesting coverage for thyrogen are doing so because they have cancer.

Thank you to Blue Butterfly for sharing her journey on her blog and allowing me to share mine. It is helpful to know that there are others out there on the same journey, it makes me almost feel normal again! I wish you all health and wellness.

Polkaroo? Was Here? Didn't Miss Him This Time.

Polkaroo was here but I didn't miss him this time!!! (And we even match!)

You'll get that reference if you grew up in Ontario during the 1970s, 1980s, and early 1990s. However since many of you readers did not grow up in that period of time, I found a youtube link so you know what I mean.


TVOntario Polkaroo was here ... and I missed him 1981

Aside from the bad acting and low budget film quality, I loved to watch the Polka Dot Door as a kid and it took me years to figure out that Polkaroo was always the man dressed up in the costume. No matter which man was cast in the role, he always had an excuse to leave before Polkaroo showed up. Polkaroos would then emerge saying one word which was, you guessed it, "Polkaroo!" with various intonations and pitches (depending on his feelings when responding to a question and the voice of the male actor cast for that episode.) How original! And depending on who the guy on the show was for the episode, the "Polkaroo!" would range in pitch. Don't laugh! A lot of Canadian actors got their start on this show. For example, Tonya Lee Williams went on to star in the American soap opera, The Young and the Restless.


Shout out to Tonya Lee! I have met her several times through the "film festival world". Years ago, when I told her I wanted to tour my festival ICED IN BLACK across Canada, she laughed (hard). (Very humiliating.) I picked myself up, dusted myself off, and then went on to run my festival across Canada to nine cities in seven provinces for two years on a shoe-string budget. I proved her wrong. Tonya Lee also began her film festival called REEL WORLD which is currently in its tenth year.

When I wrote the post Thyrogen? Was Here? I Missed It Again on April 17th, I was aware that this expensive medication which would have prevented me having to "go hypo" and experience hypothyroid side-effects, was on an extended short supply from May to June to July.

Now according to Genzyme Canada, as of July 15th, that the "limited inventory of Thyrogen in Canada is now completely depleted. There is no availability of Thyrogen in Canada". They also expect temporary shipment delays and regional disparities throughout 2011 and 2012. What the *$%# ?

But apparently, I'd still be missing the Thyrogen if I chose to have waited for it.

This is extremely unfortunate news. Thyrogen is a medication administered before radioactive iodine (RAI) in the treatment of thyroid cancer. Given that the price of Thyrogen ranges from $ 1500-2000 for two single doses, was unavailable when I needed it, and was not covered by my medical insurance, I decided to "kick it old skool" and go hypo, which is what everyone who had thyroid cancer had to do before Thyrogen came along. As a result, I had bloating, sleepiness, lethargy, weight gain, depression, etc. I was not permitted to operate a vehicle. A lot of folks had many and even worse side effects than I did. Fortunately, many of my side effects are now gone.

But if I had waited.

Waited for the Thyrogen that they said would have come but never came.

What would it have been like?

What about the thyroid cancer patients who have to wait or are still waiting?

All in all, despite the side effects of going hypo, I am glad I went through it when I did. I got the RAI over and done with. Besides, "going hypo" gave me a lot of material to discuss on this blog. (Visit my posts from April and May 2011).

Fatigue and Fire

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

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

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

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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thyrogen? Was Here? I Missed It Again.

Polkaroo (if you grew up on Canadian television in the late 1970s and 1980s, you'll understand)



Thyrogen,
Thyrogen,
Where for art, thou Thyrogen?



It's hard to not wish I had Thyrogen on a day like today. I slept eleven hours and according to my fiance, I look like I could sleep some more. What is Thyrogen you may ask? Well c'mon. It's only the most coveted over-priced rare med on the market right now. Coveted by thyroid cancer patients worldwide. Over-priced. For a cool $ 1600-2000. And rare. One manufacturer, Genzyme, makes it. No generics, people. And guess what folks? It is fresh out of stock! So far all of you who need to do your Radiation in the American Thyroid Association (ATA) recommended 1-3 months after surgery (like me, I'm at the end of month 3), you'll have to do without. So suffer!!!!!

All drama aside. The Thyrogen ordeal is thankfully over for me. And today, I realized that I have only four more days of "going hypo" before doing the Radiation and then I go into isolation for a while.

Do I sound like a drug fiend, yet? Well, no I'm not. I totally believe in natural healing methods and I am taking my naturopathic prescriptions carefully and consistently. However, nothing can replace the hormones that your body naturally produces. And when you got no thyroid, you got no T3 or T4.

When did my Thyrogen ordeal begin? Well, it all started in February when I was told that because my cancer had spread to 1/3 of my extracted lymph nodes, it was highly recommended that I do the Radiatioactive Iodine ablation or RAI. Also called I-131.

Not I-Threes.


The I-Threes (Bob Marley and the Wailers' back-up vocalists)

Back in November 2010 when I was originally diagnosed, I thought I would only be dealing with surgery. I focused on the surgery. Feared the surgery. Researched the surgery. And kept quiet since I told very, very few people about it. (And look at me now. Me have me own blog.)

So in February, after my surgery, I started to get this feeling. Intuition. Vibes, if you will that yes I would need RAI. So I immediately called my health insurance company to find out if they would cover the cost of Thyrogen. Thyrogen, the miracle drug, would allow me to do the Radiation treatment without "going hypo", that is, not have to go off my thyroid hormone (Cytomel, T3). Why would I want to NOT go hypo? Well, read the symptoms of hypothyroidism (which is when your body does not produce enough thyroid hormone or in my case, NO THYROID HORMONE):
Early
Poor muscle tone (muscle hypotonia)
Fatigue
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Constipation
Rapid thoughts
Color sensitivity
Depression
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Paleness
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
Late
Goiter
Slow speech and a hoarse, breaking voice – deepening of the voice can also be noticed, caused by Reinke's Edema.
Dry puffy skin, especially on the face
Thinning of the outer third of the eyebrows (sign of Hertoghe)
Abnormal menstrual cycles
Low basal body temperature
Thyroid-Related Depression
Uncommon
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
A slow heart rate with ECG changes including low voltage signals. Diminished cardiac output and decreased contractility
Reactive (or post-prandial) hypoglycemia
Sluggish reflexes
Hair loss
Anemia caused by impaired haemoglobin synthesis (decreased EPO levels), impaired intestinal iron and folate absorption or B12 deficiency from pernicious anemia
Difficulty swallowing
Shortness of breath with a shallow and slow respiratory pattern
Increased need for sleep
Irritability and mood instability
Yellowing of the skin due to impaired conversion of beta-carotene to vitamin A (carotoderma)
Impaired renal function with decreased glomerular filtration rate
Acute psychosis (myxedema madness) (a rare presentation of hypothyroidism)
Decreased libido in men due to impairment of testicular testosterone synthesis
Decreased sense of taste and smell (anosmia)
Puffy face, hands and feet (late, less common symptoms)
Gynecomastia
Deafness

Can you guess why I didn't want to go hypo? Yeah. I'll pass. And for someone like me, who has no thyroid whatsoever, some of these symptoms could be even more intense. Especially if you have a history of depression... blue butterfly, anyone? (But my parents didn't name me Nadia (which means HOPE) for nothing.)

Anyway, the woman at the insurance company was like, "That drug is expensive."
"You can't tell me over the phone if it is covered?"
"No, you'll have to do a pre-authorization." So I had to submit my original prescription for Thyrogen to the insurance company and wait 3 weeks for an answer. 3 weeks! Then I called them every few days to only find out from person, yes, I could have done this over the phone but it was too late since I sent in the paperwork and they probably begun the processing.

Prior to this, Thyrogen had issued a notice that said the supply was short but should be resolved in May 2011. Although I read this letter, through the posts on the Thyroid Cancer Canada (TCC), patients were still able to fill the prescription in Canada especially in large cities like Toronto. In fact, I went to Shopper's Drug Mart and the pharmacist there said that he would order it for me. It would take a week. But since I didn't have the original prescription and I thought I had time and it was no way to throw $ 1, 600 into paying it upfront without being certain I would get coverage, I decided to wait for my insurance company to get back to me. After all, May was not too far away.

Then, I finally received the reply in the mail (and after many calls to the insurance company and one in which I just about lost it), they would not cover the $ 1600 medication. They said I did not meet the criteria but they didn't tell me what the criteria was (still to this day even after I wrote back a letter to appeal the decision. Plus I had already sent all of the information they requested with my pre-authorization form.) This was extremely disappointing and upsetting. In the meantime, I had applied to the Trillium/Ontario Drug Benefit which covers medications that are not typically covered my health insurance. Thyrogen qualified and hence I might qualify. (Last week, I received a letter to say that I do qualify for up to $ 1100).

But then on the TCC website, they posted a new letter from Genzyme saying that Thyrogen would not be able until June. Then July. I freaked out. I couldn't wait since I needed to get it by late April the latest. I was so upset and had a tearful conversation with my mother-in-law-to-be. All the posts from other Canadian patients in my online group indicated they had no luck either. She suggested going in person to different pharmacies to see for myself. I went to Shoppers Drug Mart and PharmaPlus and called the pharmacies at my hospital as well as Sunnybrook and Princess Margaret (our city's cancer hospital). No luck. Then I called a pharmacy at a cancer centre in Buffalo, NY. They sent me to call another pharmacy. I spoke with a woman there and she said they were out. Try the end of April. So I called my uncle who is a pharmacist in the Bronx. (I heard that a patient might be able to get Thyrogen in Florida.) No luck. He said he called over the city to different pharmacies/warehouses and they either did not have it or did not hear of it. I called Genzyme USA and they said they were fresh out.

I was tired out and extremely frustrated. My anxiety-level from waiting at home for answers which took weeks to come was at an all-time high and I did not feel that there was nothing else I could do. Besides, I was also fighting two other battles: Getting a second opinion for my radiation dosage from another specialist (what an ordeal!) and appealing to get sick benefits. (I will talk about those some other time.)

I felt alone. And this is one of the reasons I began to go to Wellspring (a cancer support centre) in March. I could find people who were going through what I was.

So I did my cancer lesson #3: Let Go (and Let God). As a result, I feel more at peace with the situation especially since I did not have to fight anymore. I could save that fighting spirit for the cancer cells within!

As for going hypo, it too will come to an end.