One Year Follow Up

The following is a post written and published on Facing Cancer’s website where I am honoured to be a writer. You can find the original post here.

The ticking of the clock is getting louder as the days pass. This week it will be 10 months since I found out I am in remission from advanced Thyroid Cancer.

I was diagnosed in June of 2009. I sat the doctors office in shock, even though I had already self diagnosed, and knew in my gut it was Cancer. But even though I told myself I was prepared to hear bad news, it was still a devastating blow. It was explained to me that if I had to have cancer, this was a good one since most people are treated and recovered very quickly. What I didn’t know until much later was that My entire thyroid was swallowed up by the disease and that I had lymphatic metastasis. So my journey was much longer than any of us could have expected. I lived in a chronic state of illness for 2.5 years. Until the day I sat in the doctors office, once again expecting bad news. My mom was with me for the first time ever, so I grumbled through obligatory introductions. My doctor looked at my mom and shook her hand politely and said something to the effect of; it’s nice to meet you, but we won’t likely have another opportunity for about a year. I felt immediate panic, thinking she was about to announce she would be taking a leave from her practice, leaving me in the lurch, as my previous doctor had. She asked me to have a seat and then went over the numbers from my recent labs and my whole body scan. I sat there, blinking slowly, trying to understand all the numbers, when my mom, seemingly understanding my confusion, piped up asking what it all meant. “It means we’re finally at a low enough level to consider Coleen to be in remission”. That happened on Jan 3rd 2012 and was the best belated Christmas gift I could have received.

I’m thrilled that I am counting it and remembering every month. I’m not sure that I’ll ever forget how significant the 3rd of each month is. You’d think I would feel more at ease the further I distance myself from that date, but for me it’s quite the opposite. I live with the fear of recurrence in the back of my mind, gnawing at my happiness like a termite. It’s happening one thought at a time, but collectively the thoughts frighten me. The what ifs, and the panic every time a new “symptom” pops up. I can’t be the only one who feels this way, can I? I know it’s not healthy but it’s not a conscious choice I make.

Right now I’m in the countdown to my one year follow up. I have heard variances among fellow thyroid cancer survivors of what one year testing involves. So to be honest, I’m not really sure what to expect. This lack of knowledge adds to my fears. I have just reached out to my doctors to book an appointment to review my last set of blood tests and to discuss what we do now that the one year mark is nearly here. So I guess Until then it is simply a waiting game.

Can you relate?

Unknowingly Unprepared

I have never really spoken much about death on this blog. Odd considering it’s something that was on my mind a great deal while I was ill. Those dark thoughts stuck with me secretly for such a long time. Recently I was in attendance She’s Connected 2012. The sessions had broken for lunch and I joined some dear friends in the boardroom for a quick meal. My friend Ann sat across the table from me chipper and vibrant, despite having lost her husband the past year, she seemed to be really flourishing at the event. Then a woman takes the stage for an impromptu chat. She was representing an author who penned a book about her experience after loosing her husband suddenly. Instantly I felt a bit sick and turned to look at Ann, only to find that the ENTIRE room had just awkwardly done the exact same thing.  I worried for her, I felt for her and I saw tears welling up in her eyes. This woman I thought was coping so surprisingly well was right back in that moment, immersed in her pain all over again.

I know the speaker had no idea the weight her words would hold for some of us who have grown to love and admire Ann. Nonetheless, I sat stone faced listening to her speak about how the author was so deeply unprepared. There was much she hadn’t done and much she had no idea how to do. My own situation bubbled up and I was then crying too. No longer out of sympathy for my friend, but out of anger towards myself because I had convinced myself that I was prepared in th event that I lost my fight with cancer.

In my guest post on Anns website I recount how terrible my situation was, and how selfish I was to have had cancer and not have taken care to properly plan for myself and my family.

You can read my post here: Unknowingly Unprepared

Hippofatamus Goes Pink For Thyroid Cancer

If you haven’t seen my original post, you really should begin there. However if you already read it, or you just want to skip to the good stuff, feel free to continue reading.

I committed to dying my hair pink in honor of Brooke, a fellow thyca warrior. She wasn’t as lucky as many of us are. She lost her life to Thyroid Cancer. I had never met her, but I am well aware that despite her diagnosis, she was a fun spirited girl with lots of life in her. She could often be seen with pink hair or fun pink highlights. So Team Thyroid decided to go pink as a tribute to her.

At first I mulled it over, then I shot my mouth off, jumping in quickly with very little thought. I tend to act based on my heart quite often. More often than not, my heart beats my brain to the punch. It was too late, despite nerves I had already told CancerGirl I was in. Then my brain kicked in with: “Oh no, what did I do? I can’t go pink, I’m too old! What will people think.” Then I slowed down and really thought it through. The people who have been there with me understand my passion for social good, cancer awareness and fundraising. They will not judge me based on nonsense, like so many might. I can use it to spark a conversation. My pink hair can generate real awareness if I just take the time to look people in the eye and tell them why my hair is pink. I realized Thyroid Cancer is bigger than me, and people need us to raise awareness for a seldom spoken about cancer. So I now had it all rationalized in my head.

Next I did some research about what kind of pink I wanted to do? Temp/semi/perm? As many people on thyroid medication can attest to, my hair can’t hold colouring anymore. I’ve been told it’s a Synthroid thing. At any rate, I chose a demi perm and I bought ‘N Rage Demi Perm in Bubble Gum Pink.

I was warned it would turn anything it touched bright pink, so I took precautions. I can safely say it smelled great! Just like bubble gum! It was messy but as I mentioned I was careful so I had nothing go wrong. I did not strip my hair first I did it on freshly washed, oil free hair and here are the results:

I’ve had rave reviews  on the colour and how it suits me. It says it will last 3-6 weeks, I doubt I’ll get that long since it has already faded a bit, but I really like it. So what do you think?
Don’t forget you can help the cause by donating $10 to me directly via email money transfer or by going to CancerGirls donation page . Ask me if you have any questions about it!

2012 is bringing changes!

A tearful conversation with my mom about my recent emotions, as well as a candid one with my hubby, brought about a lot of thoughts on how I can feel better. I spoke to both of them openly about how hurt I had been by a couple of people I thought were friends. I can see very clearly they are not anymore, and was struggling with that. I was also struggling very deeply with mixed feeling after being cleared by my dr. Finding out my cancer was gone was really a shock to my system and I haven’t been coping as one would expect to such amazing, life altering news.

A couple of weeks have passed and I am not the big weepy mess of confusion I last wrote about anymore, but rather I am inspired to feel better by being better. Basically I am going to push down the negative thoughts and feelings and immerse myself in my ability to see the positive in any situation.

I don’t do resolutions but I decided after these conversations that this is what I will strive for this year.

  • I will no longer let bullies make me feel bad. I’ll kill ’em with kindness instead. 
  • I will stop worrying about how other people feel about me and learn to love myself again.
  • I will think of 5 things that make me smile every time I feel negative thoughts bubbling up  
  • I will push myself to see the good in every situation, no matter how tough it is.
  • I will allow myself to move past my illness.
  • I will begin making small steps to get out of my house more often, and work through the anxiety.
  • I will make myself a household binder to get myself on track and on a schedule.
  • I will continue being the best mom I can be and work towards being a less dependent wife.
  • I will actively work on my blogging and keep current.
  • I will make a plan on how to achieve my writing dreams and create a timeline to motivate me.
  • I will put positivity out in order to see it return to me.
It’s a list in progress as I am sure I will be adding things as my mind races with thoughts on self improvement. Even though it’s only been a couple weeks I have let a lot of negative things go. Like friendships that have clearly faded. I’m finally OK with that. I spent a lot of time pondering what I may have done wrong but now I know in my heart that it really doesn’t matter. Those people have shown themselves and my true friends are still right here with me through thick and thin they are the ones who deserve my focus.
Life has been much sweeter these past two weeks, and I know it’s only going to get better as I work to find a new, post cancer, normal.

Shouldn’t I be happy?

I can’t sleep. I feel ashamed of myself. I’m hurting emotionally and I have no reason to be.

I know that the fact that I am cancer free is still fresh news, but I think I should feel happy. But I don’t. I feel everything but happy. I feel sad, scared, depressed, anxious, and angry. Everything BUT happy. 

WTF is wrong with me? Am I broken? Who finds out their battle with cancer is finally over and spends 4 solid days crying? Me. Why? No idea.
I have kept this emotional upheaval a secret from everyone but then my mom called me and I completely fell apart on the phone. Granted there were other factors involved that had me feeling a bit emotional, but for the most part it was all over my confusion from being cancer free. I bawled while I talked to my mom, and she didn’t sound the least bit surprised that I was feeling this way. She was very kind and supportive of me, explaining that it was going to take time to sink in. 
All I know is I feel horrible for not being anything but happy. I’ll talk to my therapist about it and see if I’m normal or not. 
The honest truth is that I just don’t know what to do now. How do I move forward? Cancer has consumed my life, my calendar, my medicine cabinet and so much more, and now it’s just gone. So what now?

I’m a Survivor!

Wow, Yesterday I had my follow up appointment to find out the status of my cancer. As I wrote in my last post I was scared to death of metastasis. I felt quite certain it had spread. I don’t even know that I have grasped what the Dr. told me yet. After meeting my mom, who was kind enough to come with me in case I got bad news, the Doctor go down to business explaining my cancer marker levels at each interval from the past two and a half years. Basically while my level is still not a zero it was low enough that I am safely considered:

CANCER-FREE!!!

Yes! That’s right I am finally over this shit! I don’t know how to react. I think I’m still kind of numb. I had to ask the doctor 20 times “are you sure?” She was please to tell me she was sure and she commended me on sticking it out, acknowledging that it was a longer battle than the majority of thyroid cancer patients endure. She also encouraged me to go see my family doctor so that we can discuss the pain and other issues that were causing me such concern. She said that it’s great that it’s not caused by the cancer but that it still needs to be checked out. I will certainly follow up with him, but really who cares about all that? All I know is I have a new lease on life and 2012 is my year!!!

I am a survivor!

Going "hypo"

For the past few months I’ve noticed I have an increase in pain, tingly hands and feet, severe exhaustion caused by my long bouts of insomnia among other strange little issues. For the past 6.5 weeks (since November 1st) I’ve been going hypothyroid to prepare for a whole body scan. I was unable to get Thyrogen as it is in shortage STILL, so my Dr’s decided I could no longer wait for it and ordered me to go hypothyroid the old fashioned way.

For those of you wondering what it means to “go hypo” here’s an explanation:


Everyone`s body requires thyroid hormone, a hormone taken in synthetic form once the thyroid has been surgically removed. Without this thyroid hormone, the body produces an increasing amount of thyroid stimulating hormone (TSH). An elevated TSH of at least 30 mIU/L is needed for the RAI treatment to be effective. To achieve this rise in TSH, we must stop taking our thyroid hormone replacement pills, or have our TSH stimulated by taking Thyrogen, a medication given by injection. Going hypothyroid by hormone withdrawal, involves stopping our synthetic T4  for many weeks prior to RAI-radiation treatment. During the time that T4 is stopped.  ‘Going hypo’ is a gradual process with the thyroid hormone changes occurring slowly over the weeks with out T4. The longer we are off of thyroid hormone T4, the more symptoms we experience and the worsen with each passing day.

When you go “hypo” these are the side effects you can anticipate.

  • Fatigue
  • Sluggishness
  • Increased sensitivity to cold
  • Constipation
  • Pale, dry skin
  • A puffy face
  • Hoarse voice
  • An elevated blood cholesterol level
  • Unexplained weight gain
  • Muscle aches, tenderness and stiffness
  • Pain, stiffness or swelling in your joints
  • Muscle weakness
  • Heavier than normal menstrual periods
  • Brittle fingernails and hair
  • Depression

The first week or two weren’t bad actually but after that I began going down hill. The only benefit I found was that since I hadn’t been sleeping in months, the exhaustion from being “hypo” changed that and I was sleeping better. I also already had some of these side effects prior for one reason or another but they worsened and I developed many others. So it has been a long couple of months and next week I go for the Radiation and a few days later the scan. I should know more by early January.

Hoping and praying it’s not spread, but preparing myself for the worst just in case. I’ve always had bad news so I’m not about to let my hopes get up only to have them dashed by a Dr. dishing out bad news.