In the spring of 2023 I was listening to a guided meditation while gardening. The exercise was something about sending love out to all living beings. As a spider ran across the soil, I reluctantly wished joy to the little monster.
For some reason something shifted inside of me that day. In years past, I made it my mission to forcefully remove any and all spiders from our yard, starting from their earliest existence (so that I wouldn't have to face them when they became fully grown monsters).
I started to wonder whether I could choose to coexist with them this season.
When the egg sacs began to hatch into the tiny yellow spider clumps of doom (ya know?), I left them. And as they grew, I watched them, and made the decision each day to be ok with them.
At some point I started to wonder, if all it took to be ok with spiders was to just decide to be ok with spiders, and then put in the work day by day to do so,
what else could I overcome?
Things escalated rather quickly after St. Mike's. After 7 months of unknowns, the news that my numbness would likely heal was cause to celebrate. I went outside of my ultra strict diet to enjoy a celebration lunch with Jason, and an espresso, which was a serious treat. By this point I had even removed caffeine from my diet, one of my last few joys. Like all of the other diet changes, it didn't help. Anyways, times were good on June 7th. It was a Wednesday.
On Saturday, June 10th I volunteered at The Compass Run for Food, an amazing fundraiser for local food security programs - both the food banks and school breakfast programs. If you have never participated in this event, you don't know what you are missing. If you have run in it, but have never volunteered at it, you also have no idea what you are missing.
It was a joy-filled day, but a stressful day. My UC was at an all time worst. One thing I failed to mention is that I just barely physically made it to St. Mike's. It was a morning appointment and I was crying in the bathtub minutes before we had to leave praying that the pain would subside. So when I found out my Compass volunteer shift started at 6am, I pretty much burst into tears. There would be just no way I could do it. Still, I had committed so I had to at least try.
Due to a little sheer luck, and the kindness of a caring friend who organized a bathroom of my own that I could use as much as I needed, I made it through the day.
At one point during the day I snuck away to take a phone call. It was Dr. J, reaching out in response to a call for help (actually a call for help from my mom after I refused to call him myself. It wasn't that I thought I didn't need help, I just knew the list of things that could help was dwindling, so I had a hard time seeing the point).
One thing I should mention is that after stopping Remicade, I started another new biologic called Entyvio. They would assess the effectiveness at 14 weeks to determine if it was working. Despite my fear of potential side effects, I was actually pretty hopeful it would be the one. It was touted as being much more "gut specific", and it wouldn't suppress my immune system like past meds.
But now at week 9, there were no signs of anything changing. Things had actually gotten worse, having progressed to the point where I was losing a new and concerning amount of blood daily. Along with that, my levels of pain were reaching new heights, so I reluctantly gave my mom permission to reach out for me.
It was during this call that he prescribed another round of steroids (to try to get the bleeding under control), and oxycodone (for the pain), and for the first time I heard the words,
"we might have to think about a colectomy".
The universe can be so cruel sometimes. And sometimes all you can do is just laugh at the ridiculousness of it all.
3 days to celebrate after my good news from St. Mikes, and then wham - I would now be pooping out of my stomach into a bag.
I wasn't completely surprised, I knew I was inching towards this reality, in fact I had already done some work on it with my therapist, but you are never really prepared to hear it spoken out loud.
So two referrals were made - one to a top immune gastroenterologist at Mount Sinai, Dr. Z, and the other to a highly regarded surgeon, Dr. R.
Both referrals came through quickly, but it was the surgeon I would meet first, on June 22nd. Dr. R was completely shocked that I had been in the state I was since January. He kept repeating the words "severe bowel disease", risks of cancer, risks of things becoming emergent. Most of it was a blur. He gave me a pretty bleak expectation that Sinai would have anything more to offer. He strongly believed surgery was the only remaining option, and that by waiting any longer I was risking a much more dangerous emergency surgery. By doing it now, he would be able to perform it laparoscopically, shortening my healing time, and keeping me safer and stronger.
He offered me a spot on July 7th (15 days away). I booked it, thinking if things improved, if Entyvio started to work, or if Sinai had a better idea, I could always cancel.
The next week was one of the longest of my life, for a couple of reasons,
My body and nervous system were utterly exhausted from the events of the previous 17 months. Up until mid June I had managed to carry on running a business, lifting weights, running and the odd volunteering gig but I had now reached my breaking point. So after mid June I removed everything with the exception of work. Then it got to the point where I was napping in my car as much as I could, often in between clients. Then one day I fell asleep face to face with a client and that was my final sign to stop the madness, but I still had some loose ends to tie up so I would continue to work limited hours for the time being.
I was supposed to go to Mount Sinai on Monday, June 26th, but they had called on Sunday afternoon to cancel my appointment due to a clerical error (insert eye roll). I pleaded with them to reschedule it ASAP, explaining that I didn't have time to wait. So they offered me a virtual consult with a nurse practitioner, who was then going to share my case with Dr. Z, who would then call me sometime within the next few days with his opinion.
Day after day I sat waiting on that call. My mind ping ponged between preparing for my life changing surgery (if Sinai agreed with that course of action), while holding onto hope (in case they didn't agree with that course of action). Plus a little sprinkle of hope that Entyvio could still come through (although I was now at the 12-week mark so it wasn't looking great).
The line between holding onto hope and coming to terms with reality is a really difficult line to straddle, and for 8 days I had one foot firmly stuck on either side of that line with no indication of which direction to go.
I was able to see my naturopath that week, and she affirmed her belief that surgery would be my best option, which helped me a little more over to the side of reality.
The only thing I knew for sure was that my body was showing new signs of distress. My blood work was heading in the wrong direction for the first time. Daily heart palpitations were my new normal. From March to June my resting heart rate had gone from 66 (where it had sat for about a year - higher than my normal but holding steady all things considered) to the mid 70s, and on really bad days could get well into the 80s. Multiple times a day I was now getting notifications that my heart rate had risen above 100 while at rest.
I needed to prepare for surgery with or without Sinai's opinion.
So on June 30th I went to the Headwaters Health Care Centre for my pre-op appointment.
Later that evening my phone finally rang. Dr. Z was kind, personable and empathetic. He took the time to look at every angle with me. He had one more medication option I could consider. The med had a pretty scary black box warning on it (that's the most serious level of potential side effects).
The key takeaways from our chat:
If I were adamantly against surgery, he would explore this med with me
There would be a very low chance of it working, even lower given my history of sub par responses to other meds
As it stood that day, despite my declining condition, I was still relatively strong heading into surgery
These meds don't work instantly, so in the time it took to try it, I could become much sicker
If I became sicker I could potentially get to the point where I'd,
a) end up in emergency surgery or
b) become too weak to be able to have the surgery
Surgery was my safest option
The call affirmed what I already knew deep down to be my truth.
I couldn't go on any longer watching myself get sicker.
I could choose to get off this roller coaster.
I was all in. No more straddling the line between hope and reality. It was a strong decision, one I never really wavered on after that day.
I got off the call at 7pm on the Friday of the July long weekend.
That gave me 6 days to mentally prepare for my biggest challenge yet.
By the end of June the spiders were getting a little bigger.
And somehow they had already shown me that I would be in complete control of choosing how I would experience my next chapter.
Now, as fall comes to an end, only the strongest have survived. With one in particular, there is a sort of game between us. She doesn't bother me during the day, instead she stays in the crack between the door above her web, and at night I turn on the porch light in return. We have an understanding.
Somehow making peace with spiders has been one of my proudest moments of this season.
Next up in My Story: Chapter 6: Grief & Finding Meaning
