My run with Cancer

It would seem that, as much as this trial was supposed to be a targeted therapy, it didn’t target what we hoped it would. I say that, but I want it to be clear that I am not resentful. The gift, opportunity and blessing that it is to have access to clinical trials far outweighs the negatives. Yes… I’ve participated in 3 trials so far… one of them worked. But that one worked WELL. I likely wouldn’t be here today if it weren’t for that trial. That is what I am constantly grateful for.  The past 2+ months have probably been two of the most consistently challenging months for me since my original diagnosis and surgeries in 2018. While we can not definitively attribute what I’ve been experiencing these past 2 and a half months to the trial (there are many variables) the “why” doesn’t matter at this point.  3 weeks ago I couldn’t get off the couch without causing a coughing spell. I dreaded the idea of a flight of stairs. I stopped being able to even walk the dog. The violent coughi...

 This trial started off strong!  Strange… but strong. Started with a 30 min injection and a bunch of measurements. It is strange to have a nurse approach you with a meter stick and a Geiger counter … but it happened! The first 2 weeks were heavy with appointments and tests, but other than having a couple days of severe fatigue , things were good. I had just cleared 2.5 weeks of appointments when I started getting a bit of a runny nose. Then suddenly last Sunday (Nov 16) I started feeling rough, flu like and… my hair started falling out!!  Hair loss was not an expected side effect.  I went in the next day and had blood work, saw the team and no one could explain the hair loss .  However, I had apparently started brewing pneumonia !  So I’ve spent the last week recovering while continuing to lose large amounts of hair. It would be everywhere. On my pillow, on the couch, in my clothes and every time I ran my hand through my hair I’d come out with a handful. By...

  It’s been a hard year so far… but I’m still incredibly grateful for it! I realize now as I look back on my last entry that I felt I had so much to update on and it was all so emotionally charged, that all I could do was word vomit it all out as fast as possible.  Walking beside my dad while he had to come to terms with his diagnosis was like reliving my experience again in fast forward. He struggled with a lot of guilt, blaming himself for his diagnosis. He said to us many times how sorry he was. We (my mother and siblings) continued to tell him that he had nothing to be sorry for!  This was not his fault. I was incredulous at how he was feeling…. Until I flipped the roles and realized that I have been harbouring so much guilt for putting my kids through this stress and making them deal with mortality so young.  In my dad’s final days, while he was unresponsive and we were administering morphine through a pump when he’d seem to be uncomfortable or agitated, my hear...

I have struggled with writing something here for months. At the end of 2024 I wasn't sure what to write because I was in a period of uncertainty. The clinical trial had been hugely successful, reversing years of growth.  In late 2024 my scans started to show signs of treatment failure. As I said to my oncologist “I’ve seen this film before… and I didn’t like the ending”. There were signs of growth but nothing definitive; nothing that qualified as treatment progression. In November they asked me if I had developed a cough (not something you want your oncologist to ask). Apparently there was a tumour that was growing next to my right bronchus and they were concerned. We decided to try going up in dose to see if it would help and rescan in January.  For some reason this spurred me to do what I said I would never do… sign up for a full marathon 🤦‍♀️. Looking back… I signed up on January 1st (maybe I was still under the influence?)  Soon after, January hit my family like a ru...

 Ian has been on my case to update this blog… so here I am. I preface this with… it’s all good news. I’ve just had my third set of CT scans since the end of January… 3 scans each showing continued treatment response (or as I have coined it… shrinkage). I can’t bring myself to read my scan reports but Ian seems to have no problem. It’s a new beast to have them at my fingertips. It’s not something that my native hospital in Kitchener does… “My Chart” is not a thing. I have never been able to see test results at the same time as my doctors. I know that freedom of information is important… but raw information without context can be dangerous in my opinion. When you don’t have the educated interpretation of what this means for you, I feel like it causes undue anxiety and stress. But I digress… because as Ian said… when the report says “this spot went from 13mm to 8mm” that can only mean good things. I am now almost 5 months into this trial and it has reversed almost 4 years of growth. ...

I am happy to report that my most recent dose (dose reduced) has gone very well. I have had basically no side effects.  My doctors also shared that the official measurements had come in and my tumours have decreased by 34% after just 3 treatments and my tumour markers (CEA) was down to 2.5 (it hasn’t been that low since at least 2020).  I was really nervous going into treatment this past Tuesday.  Not only was I afraid that I would feel awful again… but afraid of what that might mean; as though a carrot was dangled in front of me and ripped away because my body couldn’t handle it.  However I’m happy to report that it went better than I ever expected!  I even went for a 4km run when I got home the next day (I think 24 hours of sitting on my butt and watching Netflix while drinking copious amounts of coffee made me a little squirrelly). However that run was also fueled by a need to process conflicting emotions.  As I waited for Ian to pick me up from PMH, I w...

  I wish I could tell you that my third treatment was a breeze…. But it was far from it.  I started to react as usual with horrible nausea and then the fevers but this time my blood pressure dropped dramatically (75/52) and I started to develop joint pain overnight.  My joints hurt so much that I found it hard to move the covers on or off my body. I went home after 24 hours (Wednesday) with the rotation of Advil and Tylenol for the fevers and joint pain in hope that things would clear quickly.  While the fevers cleared at the 48 hour mark again (Thursday evening), the joint pain worsened.  In the early morning hours of Friday I woke up in so much pain I didn’t know what to do.  I couldn’t move without excruciating pain.  Trying to lift my arm to grab the sheet caused me to cry out.  I actually found myself lying there questioning whether birthing a 9lb baby with no epidural was worse… I came to the decision that they were just different but compar...

   I am writing this from my room at Princess Margaret while I await my third treatment in this trial. Treatment #2 went much better, only requiring one night in hospital and fevers were all finished within 48 hours.  I was saying to Ian that’s it’s strange to wait for the onslaught of side effects. With chemo the side effects came on somewhat gradually. With this treatment it’s like I get punched in the face. Bam! I’m hanging over a garbage can and spiking fevers.  Here’s hoping it’s not that bad and I can go home today…. They just hung the IV Benedryl so this post is getting cut short as I start my sedative stupor.  Let the games begin!

  I was really hoping that I would be updating everyone to say that I’m home and things weren’t as bad as the doctors said they’d be. Unfortunately it was pretty awful. I have had constant fevers, with periods of Tylenol induced reprieve, from Monday afternoon through early this (Thursday) morning. With some of these fever spikes I would get rigours, which the nurses here affectionately call the “shake n bake”. You start by feeling a bit chilled which quickly progresses to shivering and then to violent shaking… it’s a trip. Luckily they can calm it quickly with some demerol. I also have a mystery rash that feels and looks like a sunburn and then over night last night I developed a mouthful of sores. The mouth seems similar to the mucositis I’ve had previously… but the combination of symptoms along with low platelets is making the doctors nervous… so a Wednesday discharge has turned into a “hopefully Friday” discharge.  Overall, I’m feeling much better today, mouth soreness a...

  For those of you who follow me on Facebook, you’ll likely have seen that I successfully completed my second half marathon in October, with a personal best time. Had you asked me back at the end of 2020 if I thought I’d ever run another half, I would have said absolutely not. At that time, not only had running become difficult and painful, but I was also just hoping that I would outlive the pandemic; that I would be able to do the traveling with my kids and make those memories that we established as goals when I received the inoperable diagnosis at the beginning of 2020.  Tonight, as I sit and write this, I’m struck with how blessed I am to still be here, to be as strong and “healthy” as I am, and that I have the treatment opportunities that I do.  While the last trial was determined to have failed in November, I have been given the opportunity to start in a new phase 1 trial (phase 1 meaning first time in human use). In the meantime… as our family tends to do when my tr...

 I'm actually surprised it's been as long as it has since my last post.  I kept waiting to have something to tell everyone, but I really spent the last 3 months in a state of uncertainty.  As I described in my last post, immunotherapy can cause inflammation of tumors which makes it appear as though they have grown, when in fact they haven't.  So as I progressed through the summer and the scans every 6 weeks, they continued to show small amounts of growth, but still within the parameters of the study.  My doctor kept saying that there was no reason to stop treatment because inflammation could still be playing a role. As you might be able to imagine, that never gave me a great sense of relief or confidence.  That combined with the fact that I was then anticipating the next scan so soon made for an emotionally challenging summer.   I hadn't had that sense of dread in a long time... but it was always there, in the background, letting itself be known....

  At the end of last year, Spotify’s Wrapped informed me that I, in fact, am a Taylor Swift fan!  I never would have identified myself that way had you asked me, but once I took a little time to review, I have fully embraced my inner Swifty.  It also brought me back to a song that I heard on the radio at the time of its release and I have been listening to it much more in recent months. It is called “Out of the woods”   It was originally released around the time of my breast reconstruction (2015/2016). We had successfully had the second child we so badly wanted and fought through the original cancer diagnosis to be able to have. We waited until she was old enough to be able to manage having a mom out of commission for a little while (post op recovery)… and really wanted to put the cancer chapter to rest. It had been five years… we thought we were out of the woods.  Fast forward to the fall of 2017 (just months after having been discharged back to my GP and ...

 It has been an exhausting few days, but well worth it.   It appears that Princess Margaret Hospital was granted 1 slot for the next group in this trial, and I was a match!  Everything lined up in such a way that it struck me as such an answer to prayer.  I had prayed for healing, obviously, but specifically for God to use me to demonstrate new ground breaking treatments for cancer (I prayed for this even before I knew my file was going to PMH). My doctor's referral and the new spot opening in the trial lined up perfectly.  I met with the team at PMH on Monday, got the 25PAGE consent form and was on my way.  This consent form is intense.  My best description is that it reads like a CNN comercial. Ian and I read through it and I spoke with the team yesterday... I'm in!!   I will be rceiving Dostarlimab and an additional experimental drug whose purpose is to enhance the effectiveness of the Dostarlimab.  It will be a lot of driving ba...

  I have been meaning to write an update for quite a while… but I guess as things get harder to talk about, they also get harder to write about.  We had a fantastic trip to the UK last summer. It was everything I could have hoped for and more. Having never been overseas, the history that struck you at every turn was amazing. We had a wonderful time with great friends and made fabulous memories.  As suspected, when I returned, it was established that my treatment had failed and I was time to change course to a non-chemo treatment called Panatumumab (try saying that 10 times fast). I had been on this in 2018 and it brought about horrible skin side effects. I had been told that they had better premeds now and that they should be able to control it better. Unfortunately that didn’t pan out.  Within a week of my first infusion the skin on my face felt like it was on fire and I broke out in pustules. Shortly thereafter I felt flulike symptoms and had constant skin pain ov...

 Heading into our doctor's appointment the day before I was to start immunotherapy, Ian said to me "I don't even know what to hope for".  Which was exactly what I had been thinking.  I had gotten quite accustomed to the idea of no more chemo and its nasty side effects, but at the same time, I would like to hear favorable CT scan results.  The drawback to good CT scan results would be that a change in treatment (to immunotherapy) wouldn't be warranted.  Therein lying the dilemma.   As it turns out, I was able to get the best of both worlds.  The CT scan showed minimal growth (1-2mm in some but not all of the "spots") which my doctor said he considered still as "stable disease".  The positive that Ian and I hadn't considered was a break from chemo.  My doctor suggested that I take a chemo break until after my trip, meaning I would go from July 11th until Aug 29th without any treatment.  The longest chemo break I've had since May 2020....

I've been thinking a lot about dates recently… July 7th being the day I was originally diagnosed with breast cancer, 12 years ago.  I am also coming up on 5 years since my stage 4 colon cancer diagnosis… which is significant.  If you google 5 year survival rates, they aren’t pretty.  I therefore do not google. Continuing on the milestone theme, Ian informed me last week that my most recent chemo infusion was my 65th lifetime chemo.  In a way it blows my mind... but for the most part, it has become such the norm that I forget what life without this 2 week rhythm is like.   In terms of medical updates, things have been stable up until now for the most part.  Scans have intermittently shown marginal increases in size (marginal not measurable… which is a distinction I have learned to be key).  There has subsequently been no need for change in treatment from an efficacy perspective, although I’ve been starting to develop neuropathy which means my time ...

 Things are going well! I actually felt way better on the day of chemo this time.. no nausea!  That did kick in on day 2 but no worse than usual.  I have been able to manage fine.  It's more of a queasy stomach and taste aversion that true nausea. The cold sensitivity felt a little more intense than I remember, but that too is fading.  It's really wild... I mistakenly washed my hands with cold water while still in the chemo suite... and it felt like the water was electrified... as though I got jolted with electricity.   I had also remembered water being difficult to drink, but I haven't noticed that either this go-around... so I'm thankful for that. Thanks to everyone who reached out to me after the last post.  Even if I didn't respond... your words of support were truly a blessing.  Thank you Till next time! Shannon

 I typically haven't been updating this very much because things have been status quo for over 18 months.  We fine tuned the chemo side effects... I was truly living life and cancer really became more of a chronic condition.   At the beginning of the pandemic I remember praying "please let me outlive this thing so I can travel with my kids".  As time has gone on, that seemed more and more possible.  I had a great trip with some of my closest friends in October and was also able to take the kids away for a fun filled week in the Dominican just a couple weeks ago.  We had a fantastic time together.   I knew I was coming back to a CT scan and chemo within days and as usual, we had some scanxiety but that has become so routine that even that wasn't too bad.  We landed on Thursday (Nov 18), had a CT the next day (on Friday) and was to see my oncologist followed by chemo on the Monday. This was the first time I was able to see my oncologi...

 I realized I was overdue for an update but hadn't realized how long it's actually been! I think the main reason I haven't been online is that everything has been status quo for the most part.  We fine tuned the meds that help with chemo side effects to the point where I am functional almost the whole cycle.  I go to bed early the first few days but there is very little nausea and I'm sleeping better... really it has become my new normal.  I even started describing my cancer as a chronic condition.  I mean I'm not actively dying right now... so I am living with stable cancer. That being said... I was going to post this in June but then was afraid of jinxing myself.  My doctor let me know that it looked like my tumor markers were starting to trend upwards just as I was coming due for another set of scans.  I had to wait 2 weeks for those scan results which was tough... but the news was good!  No change in findings from last set of scans... disease ...

 Things have been going well since my last post. We had good scan results at the end of April; stable disease. I am continuing to manage the chemo well.  I had been getting more nausea but my doctor suggested an additional medication that has worked wonders the past 2 cycles and it is helping with sleep so win-win! May 13th was the 1 year anniversary of starting "palliative chemo" and was also the day I received my second dose of the Moderna vaccine.  Those 2 events coinciding have really struck me and it has taken me a little while to digest.  I remember saying to my sister, at the beginning of the pandemic, that I felt like I was in a race with covid.  There are places I want to go and things I want to do with Ian and the kids and I feel like I've spent the past year biding my time for that.  Yes, having all this "extra time" with the kids feels like it should be a gift.... but it hasn't been all sunshine and rainbows.  As we all know, trying to navi...