People often ask me how I'm doing, and the answer varies from moment to moment.
In this moment, I feel afraid!
I just went in for a chest CT scan this morning — and when I got home, the results were already in my inbox.
According to the doctors, the purpose of the scan was “to rule out lung mets” (or metastases, cancer cells that spread to different parts of the body). We’ve been dealing with a primary mass in my retroperitoneal (lower rear abdominal) area, and my medical team wanted to ensure that was the extent of the spread. It took weeks just to get my insurance company to authorize the chest CT, and I’m glad I did it, even if the findings were initially scary.
The scan showed an enlarged hiatal lymph node (near the junction of the lungs) measuring 1.1 cm, as well as a 4 mm pulmonary (lung) "nodule." Meanwhile, one of the two tumor markers that we’re tracking has continued to go down, while the other was just measured at the same level as it was at a week ago.
This last week or two, I’ve felt occasional pain in my low back and hip, which could be nothing, could be an artifact of chemo itself, could be musculoskeletal in nature, could be related to my surgery — and, as my mind has been sure to remind me, could be related to the dreaded cancer.
On the bright side (at least, I hope) the scan also caught a glimpse of the primary mass, and it appears to have reduced in size, from an initial 5.4 x 3.9 cm to 4.1 x 2.7 cm. But how much progress is this, two rounds into treatment? What were we hoping to see after six weeks of chemotherapy? I don’t really know yet.
In a redwood tree near our home in Cotati
I’ll get to talk with a doctor on Monday (which also happens to be my 36th birthday) and learn more about what this all means and how it affects my treatment. Last week, one oncologist hinted at the possibility of a fourth round of chemo after this next one. My mind is definitely spinning a bit. (What is the significance of this “nodule” in my lung and this enlarged lymph node in my chest? What does it mean that 2/3 of the way through treatment, the primary mass was just clocked at more than half its original size?) And it’s in times like this I give thanks for my inner resilience and my community.
This last few weeks, the “diagnosis shock” has gradually begun to wear off.
When I was rediagnosed back in the beginning of June, things started happening really quickly, and before I knew it, I was in the infusion chair. The time since then has been something of a blur. I trust the process, trust that I am receiving the best care possible, and trust that I’ve been doing my best — and on another level, I also have this sense (and newfound urgency) that I need to snap out of the shock more quickly and rise up more powerfully to meet this challenge.
In my last post, I wrote about the metaphor of a bear attack. Today’s results have me wondering how I’m really doing in the fight, and what more I can be doing to prevail.
Sometimes I look in the mirror, see my eyes beneath this bald head and uncharacteristically smooth face, and think, “holy shit, this is really happening.”
I embrace this dawning acceptance of the challenge I've been given. But holy smokes, fam — this is difficult.
I’ve read at length about the roller-coaster-esque nature of the cancer journey, and so far, it checks out. The pain in my body recedes (yay!) and then I feel a pang (boo!). I feel good in my body for a day or two (yay!) and then completely nauseated and exhausted the next (boo!). I get test results showing consistent reduction in the tumor markers in my blood (yay!) and then I get a CT scan showing abnormalities in my chest and a blood test showing a plateau in one of the tumor markers (boo!). It’s like a hyper-carnivalized version of life itself, with all the intense ups and downs magnified as if by a funhouse mirror.
Earlier this morning, before my CT scan, I experienced my first “guided visualization” session, and it was great. With the support of a healing practitioner, I envisioned successful treatment, the removal of all cancer, a healthily functioning body, and some of the experiences I look forward to after this, like traveling to Scandinavia with Satya, and seeing her graduate and become an adult, and meeting any grandchildren I may be blessed to have, and feeling the weight of my published book in my hands.
Prior to this morning, I had done some visualization on my own (last week I shared a piece of artwork that emerged from this process), but I have this sense that I need to step up my self-healing game.
I discovered today that the word “imagine” shares a common etymological root not only with the word “image” (duh), but also with the word “aim.” Literally, to imagine is to aim.
And how could we ever expect to succeed or hit a target without first taking aim? And if we have a target that we really want to hit (say, successfully healing through a major illness or curing cancer in our body), doesn’t it make sense to really focus as powerfully as possible on taking aim?
Meanwhile, I also had a session this week with a therapist in which I began to work through some of my deeper stories around issues of purpose and livelihood. I’ve had this sense for many years that I have a particular gift to give, a particular job to do, and it has to do with sharing my story and birthing this book. And yet, for many years, something has prevented me not only from doing it, but from even imagining it. I’ve been providing, hustling, surviving instead of thriving.
So I am making friends again with my imagination. I’m committing to allowing myself to spend more time there, visualizing the healing that I so deeply desire and the life that I so wish to create.
“It feels like a pretty fine balance I’m needing to strike. A sweet spot that will require some… aim.”
In a eucalyptus tree with Satya on the hill across the street from my home in Cotati. Daily walks have been great. But how can I level up?
And at the same time, I’m really asking myself what else I can do to level up in this fight. I’ve been doing my best to eat well, but I can’t say that I’ve radically transformed my diet. And walks have been great! But perhaps I need to run more, train harder, spend more time in intense cardio and deep breath.
And then there is what has felt like “the reality” of chemo — the fatigue, the depression — and maybe this is just my novice, low-vibration take on the process. I haven’t posted too much about Round 2 since I’ve been in it, but the words “rough” and “exhausting” come to mind.
How much more can I actually be doing?
Since my initial, more chipper posts, there have been some new side-effects that have come up — like new levels of nausea, a dry and sore throat I’ve experienced some mornings, and the most annoying of all: “chemo burns,” these uncomfortable blisters on some of my digits where the chemicals have caused temporary damage in some of the finer capillaries in my fingers and toes. I can still pick up a guitar, but I’ve also felt some pain while strumming. Some everyday tasks, like taking the cap off my toothpaste, have been painful.
I’ve continued to take long walks outside on most days, and I’ve had some energy to write — but I’ve also spent quite a bit of time in my recent exhaustion just vegetating on the sofa, watching the Olympics, Ted Lasso, or Naked and Afraid. It’s one of those areas of conflict for me: I don’t know how much to relax and take it easy on myself, and how much to rise up and fight through discomfort.
My sense is that I can really be doing better, and another voice reminds me not to stress or push too hard. It feels like a pretty fine balance I’m needing to strike. A sweet spot that will require some… aim.
But I can do better, and I will do better.
My first three posts came on Tuesdays, and this one is coming out on Thursday evening, a couple of days later than I had intended.
I’ve just been struggling. I so appreciate the prayers, and the kind messages — many of which I have yet to reply to! If you sent me something and haven't heard back, please forgive me. I am doing my best.
And I will do better.
Thanks for being here with me. It makes all the difference.
With enduring love,
Nils
PS. HUGE thanks to those who have contributed to this fundraiser. We are almost halfway toward reaching our goal. I've received my last paycheck for a while, and it looks like I'll be getting partial income through disability, but these good will funds are really making a difference in ensuring that my family's needs are met during these difficult times.