Peace

Clothe me in peace, hope, and inner strength

/ edebock / 26 Comments

This will not be a fashion post in the traditional sense. I won’t be showing you an outfit today or giving any style advice. I’ve held off on writing an update about my health since undergoing the TheraSphere treatment on my liver on March 11 because I needed time to wrestle with what’s been happening. Time to figure out how to “wear” the latest news.

The treatment itself went very well. I was in and out of the hospital in approximately eight hours and walked away feeling pretty good. A CT scan following the treatment showed that the vast majority of the radioactive microspheres that were injected during the treatment had been deposited on target at the site of the largest tumour on my liver while a minimal amount had reached a second smaller tumour and surrounding tissue. This was exactly what was hoped for. 

Had that been all that the scan showed, I would have weathered the post treatment fatigue and mild nausea with ease, but unfortunately, it also showed a nodule elsewhere in my abdomen that has grown significantly since a previous scan five months ago. That raises concerns that the cancer has spread. Knowing the importance of being proactive and advocating for myself, I contacted my specialist’s office as soon as I read the scan report and was able to have a phone consult with her earlier this week. She is going to refer my case to the medical oncology team asking them to review my file and make recommendations. 

So how do I deal with all of this? 

I feel a bit like I did at the beginning of this journey over 10 years ago. Once again, I’m facing a huge unknown. At that time, I prayed for strength to walk this pathway with grace and I continue to ask for that. In my morning prayer time this week, I’ve been meditating on a snippet of scripture from 2 Peter 2:19. “… a man is slave to whatever has mastered him.” Whatever happens, I do not want to become a slave to fear! 

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You may remember that my one word for 2024 is hope. This beautiful graphic, which I found on Rare Disease Day, perfectly combines my word with the zebra ribbon representing rare diseases and more specifically, neuroendocrine cancer (NETS) which, though no longer considered rare, is definitely not well-known. Though the pathway may become rough, I am not giving up hope!  

Clothe me in peace, hope, and inner strength.

Let that be my style! 

Mostly good news

/ edebock / 9 Comments

For the past couple of weeks, I’ve been riding a roller coaster that is known in the cancer world as scanxiety (scan + anxiety = scanxiety). 

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Over the 9+ years since my stage 4 neuroendocrine cancer (NETS) was diagnosed, I’ve had more scans of various kinds than I want to count. The morning after each of my 12 radioactive PRRT treatments I had an octreotide scan to determine whether or not my tumours had grown or spread since the previous treatment. Any scanxiety that I experienced back then was short-lived because I met with the doctor immediately after the scan to review the results. Not so with the CT scans that I’ve had at 6 month, and more recently 9 month, intervals since completing my treatments in June of 2019. After each of those, I’ve had to wait about a week to find out the results. A week can feel like a very long time if you’re riding the scanxiety roller coaster, but because I’ve been doing so well for so long, that hasn’t usually been a big problem for me. 

This time was different. About three weeks prior to each scan, I have a whole battery of lab tests. The results of those are available to me online, so before I even had the CT scan, I knew that something might be amiss. Two markers that are of particular significance for NETS patients are chromogranin A in the blood and 5-HIAA (5-hydroxyindoleacetic acid) in the urine. Both had been gradually climbing and were now flagged as being higher than the normal range. That’s when the roller coaster ride began! 

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In my lowest moments, I was sure that cancer was rapidly spreading throughout my body, but I did what I’ve done before in times like this. I called on a dozen godly women who share my belief in the power of prayer and asked them to pray. The ride was smoother after that. I still knew that something might be wrong, but I felt more at peace. I’d be a liar if I said that I wasn’t anxious at all, but I didn’t dwell in the low spots any longer. I also focused on one of my favourite passages from scripture, Philippians 4:6-7. 

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

By the time the doctor phoned today for our follow-up appointment (saving us a 5 hour round trip to the city) I truly did feel at peace about whatever it was that she was about to tell me. She gave me the good news first. Nothing of concern appeared on the scans. In fact, a tumour in a lymph node that had been there since diagnosis in 2013 has completely disappeared! That’s amazing news, especially considering how long it’s been since I had my last treatment. I don’t think anyone expected that the PRRT would still be resulting in shrinkage of tumours three and a half years later. The good news was somewhat overshadowed though by the fact that those elevated levels in my blood and urine still indicated that something is happening. So what happens next? 

I’m going to be going for a Gallium-68 dotatate PET scan sometime in January. This newer imaging technique is similar to the octreotide scans that I’ve had in the past, but much more sensitive. It will be able to pick up even the tiniest growths that might have been overlooked on the conventional CT scan. The results of that will dictate what the next steps will be, but for now I’m not going to worry about it. I’m determined not to climb back on that roller coaster. Instead, I’m going to focus on having an enjoyable Christmas!

The scan did reveal something totally unrelated to my cancer. Apparently, I now have a 1.3 cm Thornwaldt cyst lurking in my head! This is a rare, benign growth that develops in the nasopharynx, above the soft palate and behind the nose. If it continues to grow or becomes infected, it has the potential to start causing things like headaches, postnasal drip, blockage of the eustachian tubes, and/or halitosis. If that occurs, it can be drained or removed surgically. I’ll cross that bridge if and when I get there. For now, it’s just one more thing to add to my long list of weird and not so weird diagnoses!