The C-word – I mean the nasty one

Now that I have your attention – let’s talk about cancer.  It’s a nasty word.  There are very, very few positive connotations associated with this word – as a matter of fact, the only ones I could come up with are remission, or better yet, survival.  The negative attached to this word is overwhelming – the word itself is apt to produce a unique chemical reaction in our brains and has been shown to have a physiological effect on some people, causing them to exhibit physical reactions to hearing the word.  Why is that?  Why does this word, that describes a vast family of diseases, wreak such havoc and ruin so many peoples’ days?

I’m going to say, as in all my blog posts, I do NOT have the answers to any of these questions.  I only have my own experiences, my values, my beliefs and my theories.  In this case, I really can draw from experience – in a number of instances.  When I was younger, I lost one of my favorite uncles to cancer.  I saw this amazing man suffer and lose weight, I saw him fight a fight of champions, and ultimately saw him succumb to this disease.  I saw the impact that this had on his family.  If you read my previous posts, you may know that I’ve also lost my dad to cancer.  My brother had cancer and was miraculously healed – whether you believe in divine intervention or higher powers is none of my business, but something caused advanced Stage III lymphoma that had spread to his whole lymph system to completely leave his body with no medical treatment and he has been disease-free ever since.  My mom has had cancer, and I’m so grateful to be able to say she survived and is doing great.  Frankly, it’s difficult to think of a family I know that hasn’t been touched by this disease.

I too have come in intimate contact with that nasty word – as I was relaying but a fraction of my feelings on the subject to a Twitter friend, I was encouraged by a number of you to share my experience, and I’m glad to do it.

It was April 2000 – a mere 3 months before our wedding, and I was 26 years old.  Aimie and I were at the Home and Garden Show at the Agricom with a few friends, getting some ideas for the house we were building – our wedding was in July 2000 and we were shooting to have the house done ready to move in to after the wedding.  At the Home and Garden Show, I felt something in my neck.  At the time, it felt like swollen glands, yet somehow I immediately knew it was more than that.  It was only on one side – the right side.  The swelling was visibly noticeable and Aimie noted that she could see it too.  I kept feeling this lump, which was about 2 inches long and maybe 3/4 of an inch wide, and running my fingers over it.

I kept an eye on this swelling, and over the next few days I got concerned.  I wasn’t getting sick and I felt that if it was swollen glands, I should be coming down with something by now.  I went and saw my doctor.  She measured it, felt around that area in my neck for a very short time and announced that she wanted this looked at immediately.  If you don’t think we have a multi-tiered health-care system here, you obviously have a lot to learn, but let me tell you – having a connected doctor who can pull some strings makes a big difference.  That first doctor’s visit was on a Friday – this is what happened after that – 2 biopsies with pathology results, an MRI, a CT-scan and several x-rays.  11 days later, I was at the Hys Centre, being seen by a very well-known ENT surgeon from Ontario who flew here to see me.  He advised me that I definitely had cancer, a very rare type of thyroid cancer.  Not only that, but I had an even more rare occurrence of this cancer in that it was a thyroid cancer that didn’t originate in my thyroid gland, but rather in my throat – it moved into my thyroid gland after that and then spread to my tongue, and into my lymph system.  I was advised that I would be having surgery on Friday – exactly 2 weeks after first seeing my doctor.

And so it was – on Friday I showed up at the Misericordia Hospital, went through a couple of hours of pre-op goodness.  The surgeons came and marked my neck – a thick black felt line was drawn from my right ear straight down to the base of my neck and then across my throat all the way to the other side of my neck – a great big L.  I asked them “Oh, is that where you’ll be operating on me?”  The surgeon answered: “Oh no, this will form a triangular flap to open up your whole neck – that’s where we’ll be digging into you” and with that I was put under.  I underwent 5 hours of surgery, including a radical neck dissection, a thyroidectomy as well as the removal of all my parathyroid glands and all the lymph nodes in the right side of my neck.  I was left with 99 stitches and 2 drains in my chest and I woke up about 6 hours after being anaesthetized.

I felt like crap when I woke up, but the fun was only starting.  I had a typical recovery from surgery – woozy, not feeling too hot, about 6-10 hours of that.  After 3 days, I was able to go home.  With this massive incision running down and across my neck, I was told to take it easy and not to make any sudden moves with my neck.  My mom picked me up from the hospital – as you may have already guessed, I’m not a great listener at times – first thing I did on 170th Street was see a 911 Turbo flying by – of course that warranted a shoulder check – and I bled all over my mom’s brand new BMW.  It wasn’t a good thing.  We went back and the doctor advised me to let it heal and he would gladly laser the scar tissue away once it had closed up.  I’ll get back to this later.

I took the next week off work – my doctor said I should be off for 3-4 weeks but I was going crazy!  I kept feeling better and better as the days went by.  I was in a marketing position at the time, and frankly, after a week I had practically forgotten that my neck looked like Frankenstein’s.  One of our biggest customers was in and they were staring at me as I was talking to them – only after the weird looks did I remember I had 99 stitches on my neck.

In follow up I was told that there was still residual disease, and somehow I wasn’t surprised.  I think once you’ve went through cancer surgery, you feel like you’ve got most of it and you’ve just got to take care of the rest.  That was my feeling on it anyway.  I did have to go for regular CT scans and a couple of MRIs.  After 3 months, I had to go back for my first round of radiation.  Not the beam radiation, but rather the liquid radiation.  I think it’s an irradiated isotope or something like that.

Anyway, I went to the Cross Cancer Institute and was told to pack for an overnight stay.  I was NOT told what to expect.  I was taken to a room on the southwest corner of the 3rd floor – overlooking University Ave and the ravine/river valley basically.  A doctor came in – he explained that I would be drinking radiation and would have to stay in quarantine until I wasn’t dangerously radioactive – a period of 1-3 days.  Shortly thereafter, a guy came in in a biohazard suit.  I’m not kidding.  A full bio-hazard suit.  I was thinking this is from some bad movie, but was told that the employees need to protect themselves from the radiation because they are exposed to it day in and day out, all year long for many years.  Whatever man!  Even if it’s only one exposure for me, you want me to drink that?!  I figured OK, here we go – I was given a little orange juice to mix it with and down the hatch it went.  No taste, nothing differentiating it from the orange juice.

And then the tough part started.  I’m a bit of a social animal – I love my away time where I can have a minute or two to myself, but more than that, I require human contact.  I had none.  I was quarantined in a lead-lined room, with a locked door – there was a shield in front of the door, so I couldn’t even see out of the tiny window.  My food was slid in through a slot, prison-style.  The bathroom was completely covered by taped-on gauze pads – EVERYTHING was covered in it – because if you splash your pee on anything, it’s radioactive.  The phone – taped off.  TV remote?  Yep, taped off.  I had a radiation-measuring read-out on the wall that told me how “hot” I was.  All I knew was the number I had to wait for it to drop to, and until then I couldn’t leave.  It took three days, and they were the most miserable days of my life.  I missed my fiancee, I missed my friends, I missed my family, I missed working.  It seems trivial to spend 3 days in solitude to eradicate a disease from your system, I know.  I’m thankful that I could go through this treatment as it’s likely why I’m here today.  All told, I had 4 sessions of radiation treatment like this – all from 3 to 4 days – over the next 9 months.

After this, I was coming in to the Cross for check-ups every 3 months.  After a year, I was able to reduce my follow-up visits to every 6 months, and after two more years of that, I was able to come back yearly.  In November 2006, my oncologist gave me a clean bill of health.

I’m not sharing anything ground-breaking here, and I didn’t go through anything that millions of people haven’t experienced one way or another.  What I do want to share are some things that I realized while I was going through this experience.

First, I realized that life can end up being far shorter than we want it to be, and although it might seem like I complain a lot or bitch about things on Twitter, it’s not really complaining.  It’s in good fun, and almost always, I’m kidding when I complain.  When it comes to true complaining, I try my best never to do it.  I have learned to be grateful for things that I would have easily taken for granted before learning I had cancer.  I still try to do this 10 years later.

A variation on this topic is complaining about my health.  A lot of people said “Wow! I feel so bad for you – I can’t believe you have to go through this.”  No, it wasn’t fun hearing the c-word.  No, it wasn’t fun having my mind play the “You’re likely going to die” tricks on me and worrying about that.  No, having surgery wasn’t fun.  No, going back for what seemed like endless CT scans and MRIs over the years and follow-up visits to the Cross wasn’t a good time.  No, being isolated in a radiation-proof chamber in the Cross Cancer Institute wasn’t pleasant.  But let me tell you something – having to visit the Cross so many times truly opened my eyes.  I wasn’t one who really suffered.  There are people there who have been back countless times, for multiple diagnoses, who are dying right before your eyes.  And those people – they aren’t complaining.  How could I ever complain?!  Those people are amazing examples of strength and courage.

This brings me to my final point – remember how I tore open my huge incision wound on my neck within minutes of leaving the hospital?  Remember the kind offer of the surgeon to rid me of the ugly scar tissue once it healed up?  I never took him up on it.  I don’t talk about it often, and usually just tell people who ask that it’s a long story.  People probably assume it was a bad bar fight or something.  If you’ve met me in person, you know what I mean – you can’t miss the massive scar running down my entire neck under my right ear.  But, my friends, that’s the point.  I see that scar every morning – so why would I ever want to get rid of it?  It reminds me of all the amazing things in my life that I have to be thankful for.  And I never want to forget that.

A side note – if you are diagnosed with cancer, surround yourself with support and positive energy.  Talk to people about it.  There’s no shame in being diagnosed.  There’s no shame in getting treatment to save your life.  And there’s no shame in choosing not to go through with treatments if you so choose.  Cancer is a mental disease as much as a physical one.  You need to want to beat it, and you can.  You will.  And you’ll have so much more to be thankful for when you get through it.  If you’re reading this, and are going through a similar situation, or if you’ve already went through your experience – in terms of your own situation or someone you know/love, please feel free to comment and let others know how this parallels or differs from what you are experiencing or have experienced.

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