Cuts like a knife, but feels not that great

I’m doing well. I just wanted to put that out there first and foremost as I haven’t updated a lot of you in some time. There. No cliffhangers that you have to read through to the end to discover.

We have been through a rollercoaster of changing news which is why I have been reluctant to post an update. I didn’t want to have to amend a bunch of uncertain information. The quick version of my status is that I am still on deck for the second surgery to have the remaining tumours in the right lobe of my liver removed. We are relieved to finally have this news as it means a chance for me to be cured is still possible. If you’re like my mom and small details cause you to worry uncontrollably, that’s all you need to read from this post. For those who like to know specific details and aren’t going to become unhinged upon reading some of the scarier things we encountered along the way, here is the long version of where we’re at and how we got here:

The surgeon (Dr. Kim) figures I was off chemo a little too long while we were waiting for the first surgery. The tumours grew a little larger than he wanted so I am back on the same chemo treatment as before until my follow-up scans in July. If the tumours have not spread or increased in size (they have been stable since being back on chemo), Dr. Kim will be performing an embolization procedure to cut the blood supply off from the right lobe of my liver so the left lobe can grow a bit more. It turns out my left lobe is a bit smaller than normal so he is a little concerned that the resection of my right lobe might not be able to be supported by my left lobe at its current size. This is something they had intended to do during my first operation; however, they decided last minute that it would be too much for my body to undergo.

Since the last update, I have been Bryan Adams’d (get it? Like the title?) quite a bit. I have an awesome zipper that runs from my sternum to the base of my groin (a bit too close to naughty town to share the full photo publicly). I also have this really cool new feature where I get to see my small intestine protruding from my abdomen. It’s a pretty standard looking stoma: it resembles a pair of voluptuous, always moist, vertical lips. Since it constantly leaks mucus and partially formed stool, we decided to name her Paula AbDrool. She can be very vocal at times but the sounds she makes are not nearly as desirable as her namesake. I am less 4 cm of my rectum, and 3 small wedge-like slices lighter in the left lobe of my liver. As it turns out, they can slice up a lot of things in 8 short hours of being on an operating table.

My recovery period was long, sore, and boring. I was in step-down care for 8 days post op. Although my vitals were strong and I was healing nicely, I had an intermittent fever that persisted throughout my stay. They have very strict protocols regarding fevers and hydration to ensure they are not discharging patients at risk of infection for obvious reasons. Despite the discomfort of sleeping on what felt like plywood with a towel over it each night that caused my glutes to become numb for the next month, God lined up the timeline of my release perfectly. My amazing Uncle and Aunt provided a suite for us downtown on the corner of Robson and Hamilton that was only available 8 days after my surgery. Had I been released on my anticipated discharge date of 5-7 days post-op, Cariann would have had to move all of our month-long supplies and new medical apparatus from the hospital, to the next hotel/family livingroom, to our temporary home all within a few days. However, the fever held me back for that extra day so we were able to transport directly from the hospital to our awesome suite at the Rosedale on Robson. The location was ideal: less than 10 minutes from VGH; walking distance to our medical supplies store and pharmacy; and a short elevator ride down to the street for much more exciting walks than I had been used to around the recovery ward. It was a fantastic meeting spot for friends and family who wanted to meet up to go for a walk or hit a patio in Yaletown to watch hockey. We are so incredibly blessed to have family that loves us enough to put this together. It made my recovery time less stressful and way more comfortable than it could have been. THANK YOU UNCLE GARY AND AUNTIE CINDY! WE LOVE YOU!

I have many micro stories to share from and since my first surgery that include (but are not limited to)...

• Having the staples removed from my abdomen only to find one hiding in my bellybutton days later

• My poop bag exploding in bed after enjoying a cider

• Meeting a new, inspiring friend in the recovery room who is going through a similar journey

• Having my fantasy hockey league trophy snuck into my recovery room by a nurse I didn’t know

• My first post-op sneeze

• Having my follow-up CT scan accidentally compared to my last scan from before my surgery and being told that my tumours had quadrupled in size (which was not the case)

• Getting a balloon in my butt

...but these will have to wait for another time. I’d like to use this post to catch everyone up on the plan and where I’m at in this battle.

Initially, the plan was to have a follow-up surgery to resect the remaining tumours from the right lobe of my liver. However, as previously stated, Dr. Kim believed that I was off chemo for too long which allowed the remaining tumours to grow a little larger than he felt comfortable with. He recommended that I return to Kamloops to undergo 2-3 more cycles of chemo before moving ahead with the next surgery. My first cycle was scheduled for the day after we returned home. The treatment hit me hard. I was vomity, completely depleted of energy, and in excruciating abdominal pain from dry-heaving. For the first week after my injection, the only exercise I could muster was moving from the couch to the bathroom. Even that pushed me to my limit. By the end of that week, I regained enough energy to start physiotherapy. The second cycle wasn’t much better. However, by the end of it, I almost felt like I had recovered from the surgery and was close to being back to normal. At this point, we made a plan for me to start returning to work part time.

Dr. Proctor and myself were anxiously awaiting a call from Dr. Kim after my 6 week scan. Dr. Proctor was not feeling optimistic as there was no visible change in the tumours and my tumour markers had only stabilized; not decreased. I took a week off of chemo in the off chance Dr. Kim wanted to pursue surgery immediately, and to give my body a bit more time to recover. By the end of the week, we still had no word so we went ahead with the third cycle. This one went much better. I still had the persistent nausea but the dry-heaving was minimal. I even had enough energy to walk home from the hospital directly after my IV.

At the end of the third cycle, Dr. Kim reached out. Despite the relatively negative outlook from the radiologist and my local doctors, he felt as though the tumours were still operable and the plan was to continue on treatment for two more months to keep them stabilized. My follow-up MRI is on July 4/21 in Vancouver. At this point, he will assess any potential progression of the tumours and if they look the same (or smaller), I will go in for the embolization procedure. After that, as long as the left lobe of my liver increases in size, he will be able to go ahead with what we are praying will be the final resection.

My most recent follow-up procedures (barium enema and colonoscopy) revealed that there are no leaks in my rectum and the procedure was a success. That means I will be able to have my poop bag (ileostomy) reversed. I’ll be able to poop normally again! Furthermore, there are no signs of recurrence in my bowels. Personally, I am taking this as great news. The longer I go without cancer in my rectum, the better!

Overall, I am feeling fantastic physically. I am able to play golf this summer and I’ve been on the tennis courts weekly. I’ve been able to participate in our intramural games (soccer and basketball) against our high school students. I’ve taught up to 3 days in one week and although I am drained after a full day, I am able to get through with relative ease. Finally, the chemo hasn’t affected my voice nearly as much as the last round so I have been able to help lead worship at church and continue to write/record songs. I’m still not back to normal, but it feels like I’m well on my way.

Mentally, I am still recovering from the rollercoaster of news and changing treatment plans. My “chemo brain” is still alive and well; a little less fuzzy this time around, but my memory/processing has taken a greater hit. I have more trouble looking at screens and my stamina for reading/writing has decreased significantly (another excuse for not having updated this blog for so long). Even though it’s been a bit more challenging to plan things for work and engage in prolonged conversations, I feel as though I’m pretty lucky to be able to do all the things I can during this course of treatment. It could be way worse!

Financially, I cannot thank all of those who have donated to our Go Fund Me and our Meal Train enough. We have had nothing but problems with our EI and disability claims so having the extra funds to fall back on has alleviated a lot of stress. I honestly didn’t think we were going to need much going into my time off work but since I was not eligible for wage top up, and Cariann had to switch to the caregiver EI plan, we were barely making half of our normal earnings. We also had to wait for almost two months before any payments went through. Furthermore, with being put into a higher tax bracket last year, our Pharmacare deductible more than tripled. This led to thousands of dollars out of pocket for prescriptions and medical supplies. I can’t even imagine living in the US without any sort of coverage. Getting sick would not be an option. We wouldn’t be where we are without all of your emotional, spiritual, and tangible support, so thank you, from the deepest, most inaccessible areas of our hearts.

Thank you for reading through this fragmented, grammatical atrocity of an update. Once I’m off chemo again, I hope to regain a bit of my creativity and writing mechanics. In the meantime, we appreciate everything you have done for us. This army is strong and will NOT go down easily. Here we are, even closer to proving that CANCER OF THE RECTUM CAN’T WRECK TIM! #CantRecTim