The last 10 yrs... feel free to skip it if you know this one!

I think it’s important to start with … I am not a writer.  I went into the Sciences in large part to avoid writing essays... so this is a little outside of my comfort zone.  It may not be pretty or poetic... but it's me. 

I am starting this blog as a way to communicate updates and how I’m managing, to those who want to know.  Given that this will not be a sprint to the finish line, I don’t really want to post all the play-by-plays on Facebook (too many sports analogies?).

I guess for those who haven’t been around for the whole journey, my run with cancer has been a long and unexpected one.    It started with a diagnosis of Breast Cancer at the age of 33 (10 years ago... if you're counting).  This came after 5 months of investigations in follow-up to a miscarriage I had on Family Day of 2010.  It took until July 7, 2010 for it to be eventually diagnosed and surgery scheduled.  I was told a number of times “well you’re too young for breast cancer”.  I have always believed that the miscarriage I had, in a way saved my life back then.  I mourned that baby, and wanted to get pregnant again, but couldn’t do that until we got to the bottom of the symptoms I was having. 

To make a long story short, I had a mastectomy in late August of 2010, and after some failed attempts at reconstruction, we were given the green light to try for another baby.  We were blessed with a positive pregnancy test on Family Day of 2011, and it felt like we could finally put this behind us.  Caitlyn was born October 25, 2011 and I gave Breast Cancer the big FU when I managed to exclusively breastfeed her from my remaining breast until we introduced solid food.

I continued on with regular scans and follow ups, decision on reconstruction, additional surgery, and eventually in the spring of 2017 was discharged from the Cancer Center’s follow up program after being cancer free for over 5 years.   It felt so liberating.

Unbeknownst to me, I was not in fact cancer-free.  Starting earlier that year I was starting to show some strange GI symptoms.  I went to my GPs office and talked to the NP there about a strange blood tinged colour to my stool.  She asked if I had hemorrhoids.  My response:  “I’ve had 2 kids and I have varicose veins… so probably”.  At that she gave me a mail-away, do at home, stool sample kit (they are lovely by the way) but basically rolled her eyes at my concerns.  Interestingly, the kit explicitly says, do not use this with active bleeding… so of course, it came back negative.  I remember getting a letter in the spring of 2017 saying “Congratulation, you don’t have colon cancer”!

My symptoms and abdominal discomfort gradually increased over the course of the summer and so I returned to my GP’s office in September and saw a new NP (thankfully… she has been lovely).  She actually gave me a physical exam and referred me for a colonoscopy. 

It was October 19^th, 2017. Gord Downey had died the day before, when I went for that test.  I remember, because Ian had stayed up that night drinking Tragically Hip wine and watching old footage.  I was doing the prep and couldn’t join him hahaha.

The day of the colonoscopy, I remember waking up out of the propofol induced bliss after the test and being called into the doctor’s office.  He told me that it’s what I would have feared… while they can never give a definite Cancer diagnosis without a biopsy, he said that is what it is.  A spot in my sigmoid colon and he was referring me to a surgeon.  He indicated that the spot was relatively small and could likely be treated with surgery alone.  I remember being relatively unphased by that diagnosis.  It was just like “OK… we’ve done it before, we’ll do it again”.  Don’t get me wrong… there were tears and some anger.  Real anger on behalf of the kids.  Having to tell them mom was having surgery AGAIN.  But we felt like there was a solid plan and we could move forward. 

I saw the surgeon in consult, and we had a tentative date for November 21^st (if memory serves).  I just needed to have a CT scan done to ensure that it hadn’t spread.  I remember them telling me that if it spreads it likely moves to the lungs or the liver.  The week between the actual scan and the consult with the surgeon felt like it was the longest week of my life.  Every night I had dreams of finding out my abdomen was full of Cancer.  Every night up until the night before.  I vividly remember waking up after a dream of an all-clear CT scan… but it still felt ominous for some reason.

I remember waiting in the waiting room at the surgeon’s office and feeling like I was getting strange looks from the secretary… but telling myself that I was being ridiculous.  She wasn’t giving me pity eyes.  Then we went to his office… where I think we waited another 15 minutes.  I remember he had a lot of model tall-ships and ships in a bottle in his office... don’t know why I remember that… but I do. He eventually came in, sat down and told me he had the CT scan back.  He then turned his monitor around and motioned for Ian and I to come around to look.  He started at the top… pointed out my clear lungs, even commented on my breast reconstruction being visible on the scan, then said “and then there’s the liver”.  He proceeded to point out cloudy patch after cloudy patch as he scrolled through the images.  I remember it sounding like “another one, and here’s another one, and this one is quite large”.  I remember basically crumpling and saying, “my kids are too young for this!!!!”  The surgeon didn’t have much to say.  He eluded to a belief that it was not operable and said something about maybe a transplant, but doubtful and then gave me the caveat that he’s “not a liver guy”.  I left knowing that I’d get an oncology referral… and that was it.  This was finally going to get me.  Cancer, stage 4, done.

 

Here is where having a sister who is an Internal Medicine specialist at a teaching hospital is invaluable.  I was so blessed to have access to information quickly that I wouldn’t have had otherwise.  This let me avoid Dr. Google.  I could ask questions about prognosis, treatment options, etc and she could give me cutting edge information.  Let me be clear here.   I DID NOT RECEIVE SPECIAL TREATMENT.  My surgeries, scans and overall care were NOT EXPEDITED by having a family member in medicine.  I received incredible care and turn around times for scans with our medical system and I couldn’t have been more impressed with how things were managed from the point of diagnosis.   The one advantage it did give me was more information. 

That time in between the diagnosis and my Oncology consult is a bit of a blur.  It was the first time I really understood that I was likely going to die.  Caitlyn had just turned 6 and I remember looking at her so many times and crying, thinking that she won’t remember me.  

I was given significant hope by my Oncologist who immediately got me all the required imaging to review at “tumor board” ... which sounds ominous, but is really a meeting of all the experts to develop the best treatment plan across specialties.  What came from that was a “Curative Plan”.  We would use 6 rounds of chemo to shrink the multiple lesions in my liver, then do a big surgery where the left lobe of my liver would be removed and the remaining spots on the right would be burned away, AND they would laparoscopically remove my sigmoid colon and reattach at the same time. Following that, I would finish with another 6 rounds of chemo to reduce the chances of recurrence.  So that’s what we did.  I had the big surgery at the beginning of April 2018.  I spent a couple days in the ICU and 5 or 6 days total in the hospital.  It was quite the surgery.  But the liver is an amazing organ and regenerated to a point where I was back on chemo within 4 or 5 weeks of surgery.

 

We finished the treatment plan at the end of July 2018 booked a celebratory trip with the kids to Universal Studios and finished it off with a 1-week Disney Cruise.  It was the trip of a lifetime.  We hoped all of the cancer yuckiness was in our rear-view mirror at that point.

From that point on I understood the stats, the low 5-year survival rate, the high risk of recurrence; I just prayed that recurrences would be operable and that I would get the chance to watch my kids grow up.  As it turned out I only got through one full 6 month period with a clear scan.  I had 2 spots come back on my liver in spring of 2019.  That surgery was a walk in the park in comparison and I was back on my feet (and on the treadmill) after 4 weeks. 

By November of 2019 my scans showed 8 tiny suspect spots on my lungs.  By January all the spots had increased in size and there were a couple more.  By then I understood this was the beginning of the final journey. There were too many spots to cut or burn… it looked like someone did splatter paint art to my lungs… they were so spread out across both lungs.  In January, the verdict was starting chemo would be premature given that I had no symptoms and all the spots were so small.  But I still understood, from this point on, I will be living with cancer… for however long that will be.