Anniversaries you wish you’d forget

I’m sitting in my chemo chair for the umteenth time, receiving my 20th, no… 30th… no… I can’t remember which injection this is. I’ve spent a lot of time reflecting on and celebrating the positive response my disease has had to these treatments, but today is a bit more special than that. Tomorrow marks the two-year anniversary of discovering the large and plentiful masses on my liver. I’ve found myself thinking back to the day before these findings. What was I doing? Who was I with? What was on my mind? I’ve been racking my brain to recall anything even moderately significant, but to no avail. In reality, I probably had dinner at home and since Cambria rarely spends Sunday evenings at our place, it was likely just Cari and me. I probably reviewed my day plan for school the next day and calculated some preemptive behavioural strategies or activities as my students were having a tough time readjusting to life after the Christmas break. We probably put on a TV show in the living room and dozed off for a bit before heading to bed. The novel coronavirus was on the uptick but still not feeling prevalent “in my backyard”; it was not of serious concern. I had probably even forgotten that I had received an ultrasound that weekend as I had been going for tests for decades to find out what was wrong with my stomach but nothing significant ever returned. Ultimately, the evening before was nothing worth writing about.

I have already shared the story of what happened the next day so if you have been keeping up, you are already privy to the excitement that would unfold. I’m not going to go back into that. If you are not up to date in the story, see the blog post “ The negative side of positive results.” But my recollection of the evening before receiving my ultrasound results shares many similarities of how the story has been progressing since my last update. Nothing truly remarkable has happened. “No news is good news,” right?

Since the last update, I received a few more treatments of the irinotecan, the tumors had not progressed, but were not getting smaller. I had a few small breaks in between treatments as we were waiting to hear back from the surgeon, which could be responsible for the consistency of the tumours. Had we engaged in a continuous protocol, there is a chance the tumors would have shrunk. Nonetheless, after finally hearing back from the surgeon, he confirmed that surgery was still on the table, but the tumors would have to come down significantly in size as once I come off of chemo, it will be up to a 3 month process before he actually gets to snippin’. If we were to have started at the size the tumors were, there is too good of a chance that they would either move back to the left lobe of my liver, or become too large to operate on.

Dr. Proctor decided it would be best if we move back to the oxaliplatin protocol (the one that caused my fingers and feet to go numb) as it would still be considered a “first line treatment” since it was my original protocol. The results were the same. No progression, no shrinkage. Since the chemo treatments were hitting me pretty hard and he was concerned about the health of my liver, he decided to switch to a third line treatment called “Panitumumab” which is an immunotherapy drug. It is normally used as a palliative treatment to prolong the lives of metastatic colorectal cancer patients. However, Dr. Proctor mentioned there have been cases as of late that have shown a strong response to the treatment (especially in young colorectal cancer) so we took the risk and made the switch. The treatment itself is much easier to bear. The injections are only 30 minutes long (if they are well-tolerated), every two weeks. The most prevalent side effect is a severe, acne-like rash on the face, hands, feet, and trunk. So everywhere. 90% of patients experience this side effect to varying degrees and I have fallen into that category.

The medication also depletes magnesium counts so I have been receiving 1000 mg of IV magnesium every two weeks, as well as taking oral supplements everyday.

I have more energy than I did while I was on chemo but my muscles are weak, and the rash on my hands causes papercut-like slits in my fingertips. There are times I can’t play stringed instruments which as a musician and music teacher, is less than ideal. It gets a little tricky as my body thinks it can do a lot more than it can so I’ve been taking on more in my day-to-day, but then crashing hard as a penalty. In the end, the trade-off seems to be worth it as after two months on this treatment, the tumors have come down by 40%! We’re going to keep going until we hear back from the surgeon. We appreciate your continued prayers and support as we await the good news!

In the meantime, I have been so blessed to have an admin team at work that has afforded me a .3 position as a music teacher (it works out to a day and a half) so I can stay engaged in my profession without literally killing myself. Weeks that I don’t have medical appointments and have had the energy, I have been able to TOC in other areas of the school. This schedule has enabled me to take on other responsibilities such as assistant coaching basketball, helping out with and even leading worship in a church outside of my own, and of course, building an online hockey card collecting group. Everyone involved in these endeavors is understanding of my situation and are ready to step in when I can’t be there. It truly feels like I’m living a normal life right now that just includes a weird way to poop and a lot of visits to the hospital. As much as I would love for God to provide a quick, divine intervention so I can get back to 100 percent right now, while He works out His plan for me, this whole cancer thing ain’t that bad.

Don’t forget! Cancer of the rectumCANCER OF THE RECTUM CAN’T WRECK TIM! #CantRecTim