Cancer Pt. 1: Who Invited You to the Party?

I actually know who invited those two tumors in my colon to the party at the young age of 28.  They were invited by a genetic mutation I have called Lynch Syndrome. This genetic mutation happens to be an asshole, incase you can’t tell. It gives a person a very heightened risk of colon, stomach and uterine cancer. For me it got passed down through my mother who is a survivor of colon cancer. Here is a fact for a The More You Know segment: Lynch Syndrome is most commonly found in people from Northern Italy and Newfoundland. I did not make this up. Northern Italy is where my mother’s people are from. It is also where most vampires call home. This explains my pale skin, many freckles, luscious lips, round hips, once thick hair, and thirst for blood. It also, in a stretch explains my cancer.

Life was going pretty well before the diagnoses. That is if you ignore my declining health in the last year. I was looking into why I felt shitty and I did have a team helping me. The only problem was no one thought it was cancer. I was anemic, tired, actually so exhausted that some nights I couldn’t move off my bed. I would cry from my inability to lift a finger. As well my hair started falling out in clumps and I lost 20lbs in a month. Let’s not forget walking a block would make my heart race, my loss of appetite and extreme stomach pains. Everyone was puzzled by what it could be. It wasn’t until one night my mom forced my hand into the ER that my wonderful experience began. I was originally in an ER in Hamilton, but then switch to a Toronto hospital where my doctors who were already helping me were located. The ER didn’t know what was wrong with me. To be safe they put me in isolation for fear I might have some terrible infectious disease. There was a warning on my door that stated all hospital workers who came into my room must wear a gown, a mask and gloves. I didn’t know what was wrong with me, but I did know it wasn’t ebola. This situation lightened my mood tremendously. Each time someone walked into my room looking like the evil villain in a Disney cartoon I would laugh to myself. This also worked to my benefit because people in isolation can’t share a room with other patients, so this girl got a big private room once I was admitted.

It would only be logical in the timeline to tell you about all the tests I had done. Though the entire time I was having them I was sleep deprived and half the time pretty high on something. I was also throwing up like a champ. Here’s what I can tell you from what I can remember. All ultrasound techs are evil or just socially awkward. The lab to get an x-ray at Mount Sinai is fancier than my apartment. I suspect not all nurses went to medical school. I have two bruises still present a month later from missed placed IV needles as evidence. When a tech injects the dye into you right before a CT scan it hurts like hell. A nurse wanting an ECG scan will do anything to get it. She might even flip you on your back while you’re sleeping, lift your shirt so you’re flashing everyone in the room just to connect wires all over your body to get a reading of your heart. Vegetarian hospital food is cold, sauce-less egg noodles. The worst part of a colonoscopy is the prep.

It was a few hours after my colonoscopy (I think, details are sketchy for me) that the doctor came in to my big private room and explained I had two massive growths in my colon and though they still need to test them, it is likely cancer. All my parents were in the room with me. Actually the entire time there was always a parent in my room, my mom, dad, step mom and step dad. A child’s cancer really brings the family together. When we heard the news everyone fell silent. The very nice and humble doctor quietly left the room. Finally we all could breathe and cry. Everyone in the room were in tears. The odd thing was I only cried for about 5 minutes. After that I just looked at everyone else crying and repeated to myself “it’s just surgery then chemo, just surgery then chemo”. That somehow kept me calm. Which is odd because this is the week I find out if I do need chemo and I can’t stop freaking out over it.

It didn’t take long for me to start calling everyone I love and breaking the news to them. This was the worst part of the entire experience. First I had to see my parents suffer over the news and now I had to break it to my closest friends. You never want to cause anyone pain and when I saw my family cry and heard it from my friends on the phone it just broke me. If I spoke with you, you would know how optimistic I was on the phone but it was rough hurting people over and over again. Being the reason why everyone you love is crying creates an almost indescribable feeling, a feeling that can only be described as “fuck. I’m sorry”.

Once that largely eventful day I was over, I finally had a break. No tests to get wheeled down the hall to go to. Just time to sleep, though sleep didn’t happen. Sleep didn’t happen for a month actually. Over the next few days I was chillin’ watching loads of HGTV and OWN. Things were pretty easy going (or more so then they had been), until some random doctor came in and was a total bummer. To back up a bit, since 10 months before this doctors were encouraging me to get a blood transfusion because I was so anemic and I always declined. I declined for two reasons. One reason being that I do know two people who died of HIV from a bad blood transfusion. Yes, they got their blood in the early ‘80s, but yes they were great men who are still very much missed. I do know the screening process has become much more sophisticated since then, but seeing this first hand is a hard experience to shake. The second and more logical reason for me to decline blood is I absolutely find it disgusting. Call it immature or shallow minded but the idea of having someone’s blood run through me is enough to puke. Now with this information I will continue with why this doctor was a total bummer. He told me in order for me to be healthy enough for surgery I needed to have a blood transfusion. I then looked at him as if I were trying to melt him with my eyes. I told him about the two brothers with HIV, he gave me a pamphlet to ease my worrying about why that fear in 2015 is insane. I then told him about how gross blood transfusions are. He looked at me like I was crazy and treated like I was a basic bitch who needed to check her privilege at the door.  I agreed to the transfusion and I feel as a punishment for my attitude he sent the blood just before I got my dinner. As if the sight of hospital food wasn’t enough to turn my stomach, I now had to look at it WHILE BLOOD DRIPPED FROM A BAG HANGING NEXT TO ME AND FLOWED INTO MY VEIN.  There is so much more I can tell you from my hospital experience and more is coming, but this was the most traumatic. I mean we can all agree that doctor was a jerk, right?

The day after I inherited “the gift of life” I can say with ease it did not change me into some kind of monster or make hair grow in weird places.  I did start having a lot of pain and was throwing up all the time. The tumors had made me totally obstructed and my surgery was pushed up. Within two days, high on painkillers I was under the knife. Never before had I been to an ER or spent the night in the hospital. Never before had I had a surgery and here I was being wheeled into a room to have my stomach ripped open and majority of an important organ removed. It was only five days before I was told how sick I was and now BAM my life was going to change forever. Forever after this moment I would need to have a high sodium and high potassium diet.

According to the news my family received from my surgeon afterwards, it went very well and everyone was pleased… except me. I was happy of course that it went so well. I had an amazing surgical team and am forever grateful for them. Also very happy they are doing my second surgery later in the year. What I didn’t like was the lack of warning as what to expect during recovery. I woke up from the surgery in a bit of a daze with oxygen tubes coming out of my nose. I wasn’t in pain because drugs are magical. It was the next morning when I tried to reposition myself in my bed that I realized I couldn’t. Do you know how important your stomach muscles are for moving basically any part of your body from the boobs down? You need those muscles for everything. I was uncomfortable, unable to sleep (still) and had 50 staples running down my abdomen. I was upset because I had no warning. I knew it was a massive surgery and recovery was hard, but I thought it would just be painful. I didn’t know it would take weeks before I could get out of a chair on my own and walk properly. I was discharged from the hospital on Christmas Eve and was put in the care of my mother at her place in the country. I didn’t leave my mom’s house for two weeks. I watched a lot of the Food Network and began a fantasized love affair with Jamie Oliver.  As I type it is the night before I see my surgeon for a check up. This week is when I find out if I need chemo or not. It’s looking likely. I’ve already begun shopping for wigs and smaller clothes (so far I’ve dropped two sizes).

At this point I want to highlight the good experiences:

·      I have more energy and feel more like myself- Before we had a final diagnoses I was so tired, though the fatigue did much more than make me sleep five times a day. All of a sudden I was leaving my friends at the bar early because I felt like I was going to collapse. I was sitting down every chance I got. I flaked on so many plans (which is the exact opposite of who I am). I would drive everywhere because walking was too much. My friends started to get annoyed with me because I couldn’t keep up like I used to. And worst of all I lost all confidence. When you’re excruciatingly exhausted 24/7 you lose yourself. I never felt like me, because the me I knew had loads of energy and enjoyed being social and out all night. I didn’t know or like the person I became and it made me depressed. It made me incredibly depressed.

·      I realized what an amazing support system I have- Before I had my surgery I really didn’t tell many people what was going on. Only my family and close friends knew I had cancer or that I was sick at all. And everyone was incredible. The messages, hospital visits, gifts, laughs and hugs helped more than anyone would understand. My divorced parents and their partners banded together. My parents were already cool with each other, don’t get me wrong, but never before did they and my step parents need come together as a team. When push came to shove they were phenomenal and continue to be. There was always a parental figure at my bed side keeping me company. As well my siblings came through in a bit of an unexpected way, in the best most encouraging way. This experience has really brought my entire family to a new level. After my surgery I made it public what was happening and the outpouring of love from the people I have surrounded myself with over the years was overwhelming. People I haven’t spoken to in years sent positive words my way. It brought so many amazing people back into my life, how can I not be grateful for that?

·      I’m no longer in constant pain- That’s not totally true. Recovering from a massive surgery on your stomach is painful. I would still much rather this pain than the pain I was in. Before whenever I ate I would be in pain. Sometimes it was so bad I could only have two bites of soup before I had to crash on my bed and hold my stomach. Most nights I wouldn’t be able to sleep because I was in so much pain. Surgery pain is nothing compared to what I went through for months.

·      I’ve lost so much weight- When people applaud me for this I want to punch them in the face. It doesn’t feel like a triumph when the weight loss came from something that was killing me. But still when I put on a fitted dress, smaller than what I’m used to I can’t help to look in the mirror and carry a smirk on my face that says ‘heyyyyyyyyyy’

So you see it’s not all bad! In addition to the good things above, I have also seen tonnes of movies, got caught up on some crucial magazine reading, coloured some pretty drawings, read Mindy Kaling’s latest book and sold a painting.

I still have a long road to go and 2016 is looking like a full calendar of recovery. Though I think the biggest tragedy that can come of this is if we took this experience and threw it out the window without learning what we can from it. What I have learned so far is if you know you could have a cancer causing genetic mutation, don’t put off getting tested for it, if you’re not feeling right tell you doctor everything- don’t hold back and people when they need to can really surprise you, and when they do it’s more beautiful then anything you’ve seen in a store.

**update, since I wrote this I learned I do not need chemo. Just one more big surgery to go!