What Do I Want?

The Next Act In The Cancer Circus

“Hi there. I wouldn’t say the questions are too broad, for me they just lack context so it’s hard to fully respond in a considered way. I have a clinical and creative background so I naturally wanted to know why you’re asking these questions now and how you would answer them at this moment (vs perhaps a few years ago).”

The message continued:

“Would be interesting to hear how each question came about, why it’s important to you, answers you’ve had from others, and how you would currently answer. That would challenge us as readers to respond. However, if you’re looking solely for evidenced-based answers from a clinical perspective, we would need to know the clinical context—medical history stuff. That rambling make any sense?!?”

It came in response to my questions regarding cancer treatment protocols, and the refusal thereof. I put it on the back burner since, giving priority to all other mad ramblings in my busy brain. Until now.

Why am I asking the questions? I guess I am curious about the “facts”. Simply surrendering to a protocol does not fit my personality. I challenge and question everything, including myself and my own perspective.

Am I looking for external validation, or even permission? Do I need examples of others who made their own choices with positive outcomes, to make my own decisions?

The clinical context is one I need to let go of. There are so many different types of cancers, who all behave vastly differently depending on the body they are in.

By posing the questions, looking for answers outside myself, possibly from doctors and people experiencing cancer themselves, all I have done is circle back to myself. I am the only one who can answer these questions for me. By making my own decisions and living the consequences.

Today, as I sat down to write a small substitute for the skipped Sunday Brunches, with just enough titbits to mull over, over a coffee, it dawned on me. I am having long stretches, hours , hours!! where cancer is not on my mind. The first time around (I do not in any way enjoy having to say it like this, as I obviously wanted the first time to be the only time experiencing cancer), that took me years. I don’t know yet whether these recent, temporary suspensions of any cancer awareness are down to denial, or whether the acceptance and integration have started. Either way, I look forward to these instants stretching out longer, and longer. I love living “cancer free”.

next oncology appointment

March 11th I will have another sit down with Dr Zweemer, my oncologist at the UMC Utrecht. What I want to propose is doing blood tests. When I was admitted to hospital last October 2024 there was a very high white blood cell count. My blood has not been tested again since. I would like to know if the levels have dropped. It is simple, non invasive, and we would have the results quickly. Who knows, it may have been down to some other inflammation. I had a fever then, which I also have not had again since.

All other tests have been done. None of them gave us a conclusive answer. We exhausted all options, to no avail, leaving me feeling rather exhausted in the process.

I also want to ask when a check up scan (likely an MRI) would be useful to see any potential changes. I am not 100% sure I want to scan again anytime soon. If I do, then the next step would be to take the last scans from 2015, the ones from November 2024 and the new ones and compare them all. I am just wondering where this will get me? It may say something about the past growth rate. That won’t however be a fool proof prediction of future development or growth. Because we don’t even know what it is.

I am very tempted to opt out from all check ups, at least with fixed regularity. Instead I feel quite comfortable with the idea of letting nature run it course and only report back to hospital if I feel something is off. There is something very disruptive about planned tests or scans with for example 6-month intervals. I don’t think I can sufficiently accept and integrate, or compartmentalise, to the extent it would not impact my quality of life.

Do I feel a need for concern right now? No. I feel ok. I am very tired, but this is not unusual considering all circumstances. I am not convinced this is all due to the cancer. I have changes to make in my life, which I believe will offer me more space to breathe and be myself. To heal, live and do what I feel intended to do. I have not lost a sense of purpose, but I have lost all sense of privacy and personal space.

I have, again, learned that I do not thrive living with other people. I need to live alone, with my pets, in close proximity to good people, who I engage with on my own terms. I have a very specific lifestyle and daily rhythm, an equilibrium that took me years to refine. Only when I follow my body’s flow, I am able to make the most of every day.

Knowing this, is useful. It helps my set my course, identify my needs and wants, and factor my decisions regarding cancer into this. Even though I fully intend to find a sanctuary where I can devote at least 100 days to myself and my healing, I can’t let cancer dictate how I live my life. It will not stop me from writing, reading, experiencing, learning and sharing.

I will also not let my healing depend on my circumstances, even though those will change for the better.

I don’t think the “locked in” feeling I experience comes from my body, or the cancer. It comes from my practical current living arrangements. I am where I don’t belong. I was not made for a suburban, on leash life. I have gone from urban to rural to feral.

spontaneous remission

On the upside, the unlikely scenario, full of insecurities and weirdness, also leaves space for possibilities. And a bit of wishful thinking, which my former and now retired oncologist Professor Verheijen used to refer to as “magical thinking”. I had to read Joan Didion’s memoir to understand what that meant. Reading Chapter five of my own memoir before posting it here, reminded me of the Professor’s words:

“You don’t have to believe in miracles to have faith in the strength of your own body.”

Recently I spoke to a friend who I met back in 2012 on Inspire. She has been a patient advocate, mediating between insurance companies and healthcare providers, for decades. She has vast experience with all types of cancer. She also knows about it from personal experience. Back in 2011 she also had a rarae sarcoma. In 2024 she was alsof facing a recurrence. It feels universally bizarre to have this type of synchronicity. I wish she had been spared her recurrence, yet I am immensely grateful for her knowledge and perspective.

She is very different from me, more factual, rational, logical and much more pragmatic. I have more of the hint of the holistic “nutter” who believes in energy over matter. Where we meet, is extraordinary and unexpected: “What if the mass was cancer up to a point? But has now started to revert?”

In other words she allowed room for another spontaneous remission. She thinks it could explain why and extensive biopsy came back clear.

It could also be an extremely slow moving type of sarcoma. There are those known to be so slow that PET-scans can’t detect them. But then, why were there no cells in the biopsy? And if it is a slow growing sarcoma, it can’t be PEComa. I am not one to reason myself into any conclusions. I love logic, but I love “magic” more. I do however not need a magic wand for the following: If, as Dr. Zweemer thinks, the 7x11cm mysterious abnormality has been there for years, it can’t be PEComa. The average life expectancy of PEComa currently is 16 months.

In 2011 the diagnosis based on second and third opinions was PEComa, albeit one with deviant behaviour. What has happened in 2024, the size of the “stuff” on CT-scans and MRI’s, no tumour markers in my blood, no cells in the biopsy and no imagery on the PET-scans, don’t fit the bill.

To be honest, I am tired of the guessing game, of the what if’s and the maybes. I don’t want to sound like a blase teenager, but (blowing raspberries) “I am so over it”.

Out of all possible scenarios in this contradictory cancer circus I have decided to choose option 1. As my friend said it: “(Maybe) It was cancer but it is no more.”

My cells remembered who they were and have accepted they are mortal after all. They will die a peaceful and natural death, as all healthy cells do. My body will kindly take care of it. Its infinite wisdom is vast, beyond my cognitive comprehension. I hand the reigns back to my body. It knows best. I am but her humble inhabitant.

put the breaks on it…

For the first time in months I had a session with my own therapist. We discussed a piece I have written on boundaries, my first endeavour into “therapeutic” writing. I came to a few new insights, which I now regret not writing down… anyway….

Towards the end of an almost two-hour long conversation he said: Don’t forget to put boundaries on what is happening inside too.”

At first I did not understand what he was referring to. “Your body. What is happening inside your body,” he helpfully clarified.

I told him about some inner dialogue I had last year. Dog walking or in the bath, all moments to myself for months were dedicated (and still are) to healing my mind/body/spirit connection. I have sang to my cancer cells, talked to them.

I honestly told them: “I don’t know yet who you are and why you are here. If you are looking to be loved, consider that done. You are loved, regardless of your nature and intentions. Unconditionally. The doctors say you have been sitting here quietly for a very long time. You could continue doing this. You can stay as long as you don’t disturb my health or impact my longevity.

But if I am completely honest, I would prefer it, for you to leave. I hope you remember who you are, so you can heal. Understand that the cell you were meant to be has a task. Once that has been fulfilled, you are free to leave.”

I would, maybe, possibly do a scan in six months or so. Just out of curiosity. Was my Inspire friend on to something. Did I get through to my cells. Did they listen?