My Liver Cancer Blog

Apologies for the long silence. Not too much has been happening on the health/health care front. I have continued receiving immunotherapy (durvalumab) once/month at the beginning of the month (Jan – March), but, if all goes according to plan, on April 7 I will start receiving Zeno every 2 weeks. The three people I’ve been in touch with who have taken Zeno have seen great results, with 40 – 50% reduction in the size of their tumours. (But, this is a sample of only 3 people and definitely represents selection bias. The people who have not had good luck with this drug are not posting on FB, and, to be honest, I don’t want to try to find them.)

Getting access to the Zeno has taken some doing – mostly by my oncologist and his assistant. First, he had to get approval from Health Canada for “special access” (https://www.canada.ca/en/health-canada/services/drugs-health-products/special-access/drugs.html ) because Zeno is not yet approved in Canada. This took far longer than anticipated, but I think it helped that the FDA recently designated Zeno an “orphan drug” for cholangiocarcinoma (https://www.cancernetwork.com/view/fda-grants-orphan-drug-designation-to-zenocutuzumab-in-cholangiocarcinoma ). Then, it turns out that because this will be an off-label use of a drug not yet approved in Canada it will be too expensive to receive the infusion in the cancer hospital (I don’t understand this, so don’t ask), and so I have been referred to a private chemotherapy clinic (which I did not know existed until now) for the treatment. This clinic is apparently staffed by cancer hospital nurses, who must be picking up extra shifts after their shifts at the hospital. Tomorrow my husband and I will go check out the private clinic, and then go to the hospital for bloodwork and a meeting with my oncologist. And I have another CT scan scheduled for Sunday (suddenly it has become easy to get a timely scan…), which will provide a clear baseline for us to know whether the Zeno is working or not. Shipping the Zeno is also a bit of an issue – it is coming from North Carolina, apparently, and is a “cold chain” drug, meaning it must be kept at a cold temperature while it travels across the border and to the private clinic.

Meanwhile, I’ve been living my life! I just got back from a wonderful hiking vacation in Sedona with friends from university. And I am so grateful that I felt well enough to do this! I had a terrible time getting there because of the recent storm in the Midwest. My flight through Chicago got cancelled, and then I was rerouted to Dallas, Albuquerque, and finally Phoenix. All in all it took me almost 48 extra hours to get to Phoenix because of cancellations and delays, and it required staying in airport hotels in Dallas and Albuquerque. But, perhaps it was meant to be, because in Albuquerque I had dinner with a friend from high school who I haven’t seen in more than 20 years and who also has had cancer (currently NED, praise be). It was a truly joyous reunion, and would not have happened if my itinerary had not been royally fucked up.

The time in Sedona was magical. Natural beauty at every turn and a joyful time with the best of old friends – who could ask for more. And I did maybe have a vortex moment, though it was not at a site where there is meant to be a vortex. If I were not sick I would probably not be open to the idea of vortexes (or vortices), but because vortices are supposed to be sources of healing energy, and because I so want to be healed, I decided I would make my mind and body as open as possible to unseen, unknowable forces. My friends, also normally skeptics, but skeptics who also believe “there is more to heaven and earth…”, urged me to open myself to the possibilities of a mysterious unknown.

And so it was, while I was lying on the ground next to the Seven Sacred Pools, trying to empty my mind of busy thoughts, that I felt energy and peace coursing up from the ground and through me. I repeatedly asked it to heal me. I didn’t receive an answer (there was no voice speaking to me), but I did feel more peaceful energy coursing through me. Enough so that I was tempted to take off my clothes so I could absorb more of it. The Seven Sacred Pools is a popular hiking destination, and there were lots of people around, so I did not give in to this temptation. But I lay there until I felt like maybe I was being greedy — that if, in fact, there was healing energy in that place, I should accept what I had been given and move on so that another might receive it (I did feel certain that while I was receiving energy, other people couldn’t). And I did have a thought, which felt a little like it came from outside me (though again, no voice), which was, “You are an adaptable traveller.” This made me a little sad, because the thought seemed to be making possible reference to travel between this life and the next. But I also suddenly felt myself filled with gratitude, truly cascading through me, and I cried a little and whispered, “thank you, thank you, thank you” over and over. And then I felt I should leave something behind as thanks, so I poured out some water from my water bottle. And then we went on our way, and I hoped that someone there might have the same experience I did.

So, who knows. It could have been fatigue and dehydration from the hike. It could have been neuropathy (the chemotherapy, which ended a few months ago, has caused almost constant tingling in my toes, like my feet are falling asleep, but it’s mild, and I normally don’t notice it, except when I’m trying to fall asleep, which makes me a little crazy). It could have been wanting the healing energy so badly that I imagined it. But, it could actually have been healing earth energy. That’s how it felt. One thing I know is true – I am a very adaptable traveller, a good trait to have no matter where one is going.