On not knowing and this open heart

The beautiful interior of the treatment centre, DCPT, that I have named The Particle.

 Today I lay completely still with a full bladder (the bladder is full because when full it takes up more space and protects other more vulnerable organs from radiation) for an hour while a technician tried to solve a technical problem with the proton beam. Normally the session only takes about 20 minutes. We discussed whether I should start over, go pee and start drinking again, but I preferred laying still rather than having to start the whole process over again. 

Twice a day every weekday I undress, put on the white gauzelike hospital bra and a hospital bath robe, that is one size fits all and way too big for me. And as I step up to lay down on the hard platform with knees supported and my feet in foot rests I take off the robe and am handed a small towel to cover my pelvis. I surrender my body in their care. The team consists of nurses and radiologists, but only women, which given my nakedness and complete surrender feels comforting and secure. I feel held. They are warm and caring and always take their time, which helps my body soften when I'm in there, so much that I've fallen asleep once during treatment. 

The two women touch up the black penmarks on my body, that need to lign up with the laser beams to ensure that I'm in the exact same position every time I receive treatment, so that the proton beam hits and damages the tumour and as little healthy tissue as possible. The whole setup is wild and looks like something out of a scifi movie and is in a way. Somewhere deep under ground there is a particle accelerator like the one at CERN, only much much smaller of course. 

You can Google proton therapy if you're curious. It's cool.

I'm back in treatment again and if you know me (and if you're reading this I guess you do) you'll know that it's my third round of cancer and treatment. First time in January 2019, second time less than a year ago, where I went through surgery, that was supposed to be radical, meaning that they removed the tumour completely, but apparently wasn't.

On the 22nd of February I went in for a routine scan after surgery, but instead of the "all clear" I thought I would get, the scan showed something they suspected was tumour growth. After the first wave of shock, of disbelief, of fear and grief, I managed to return to a frame of my mind, where I could place it in the pile of things I don't know and can't control. It didn't mean the fear wasn't there, I just didn't feed it. 

In an odd way having been in this situation before helped. I knew the landscape and could navigate it with greater ease. I had been in the waiting game before. Waiting for scans, scan results, biopsies and biopsy results. Not knowing.  After all, I thought, nothing had changed from before the scan, and I didn't know for sure, it was cancer, so worrying didn't make sense. So I went to work and stayed more or less grounded as I went through a new scan and then a biopsy and then the waiting for the result for the biopsy. That week of waiting for the biopsy result was the hardest to hold space for. I would get overwhelmed by fear at times, and then at other times caught up in the narrative that it wasn't cancer, but just scar tissue as it had been before. All in a not very logical, but very human attempt to get a sense of control over the uncontrollable. I kind of held my breath and all around me the people I love and that love me held their breath with me.

When the biopsy result finally came after a week, it confirmed that it was cancer, a tumour growing in the site of surgery, in the pelvic ligament. 

First I felt a sense of calm. Finally I knew. Then there was a landscape of emotions, that came and went, sometimes only a murmur underneath daily activites, at other times, mostly in the evenings and nights, they flooded me and I would lie there coming back to my body and breath to give them space and to be able to discern and navigate them as skilfully as possible.

There was this sense of a surreal parallel reality unfolding. Like I couldn't really understand this was happening to me. (I've had that feeling often since surgery and the nerve damage, I've suffered. I've had a hard time coming to terms with having a handicap). Not a "why me?" feeling, more a feeling of disconnect. 

And then fear. Fear would flood me at times. Fear of treatment, fear of pain, fear of nausea from the chemo, fear of more nerve damage and loss of mobility, fear of having to live with cancer, fear of dying from it. 

Grief. Grief over lost life. Of having to leave the work that I love so much. Grief over my pained body. 

A  feeling of letting others down and then something akin to shame. Not a strong feeling but it was there, fed by the cultural narrative that being sick is a failure. My failure. I had failed to get well. And I'll get back to this, because it's not a narrative I believe, but I want to give it some attention. 

But something else also happened. I already knew what the treatment plan was: Proton therapy twice daily for 26 days and oral chemo twice daily on all proton treatment days. It meant staying for six weeks in a flat close to the hospital so I could receive outpatient treatment. Proton therapy only exists that one place in Denmark (it's a very expensive facility to build and run). The setup reminded me of my first round of treatment 3 years ago and I remembered how hellish that had been (so some remembered bodily fear there - which I actually didn't fully recognize then. That came later), but also that despite all my fears then, it was also a time with ease and joy and pockets of deep appreciation and love for life and the people around me. A deep gratitude for being here rather than not. I also remembered that once I started treatment, all my fears ( and there were many then) of entering unknown territory, released their grip and it became a life like any life. Different than the life of not being in treatment, but a life. This reminder opened a space to trust that I would also be able to meet this round of treatment with an open heart. 

And even if it's still early days (It's been 9 days here. I came here Tuesday the 5th, started treatment on the 6th ... I have promised myself not to count days ...) I can see it happening. 

The first days were tough and I'm grateful my sister was there with me. I received two different types of chemo the first day, the oral chemo, that I'm still taking and will continue to take throughout and a dose of intravenous chemo, that hit hard on the second day. I woke up intensely nauseous and the nausea just flattened me. On the Saturday it was so bad I stayed in bed all day in spite of taking the medication to avoid nausea and drinking ginger tea and ingesting ginger in various forms. I felt weak had a tremendous headache (which I think may have been a caffeine withdrawal headache) and had no appetite. I lost courage and fear crept in again. Fear that this was how it was going to be. I guess if it had stayed like that, I would have found my way to practice with it, but I'm just really greateful I don't have to. At least not for now. 

Sunday I woke up and the nausea was gone. It took me a couple of days to begin to trust it wouldn't return and to fully begin to enjoy life without it. To enjoy food!

There doesn't seem to be much fear anymore. I'm settling in and creating routines around the daily treatments, so I stay nourished and in touch with the world outside the hospital (I've vowed to get myself to the ocean at least three times a week). And more than anything right now I feel deep gratitude. For the people who treat me and care for me at the hospital, and for my family and my friends, who are always there for me and give me so much support. So much generosity. And I have gained some experience now in being on the receiving end, I'm still not expert, but practicing. 

I'm not worried or even thinking about the outcome of treatment. I'm aware, that apart from surrendering my body in the care of experts, trusting the treatment and staying awake and openhearted, using my ressources and nourishing this body that has cancer, but is also healthy and whole, I can't do much. This is not a battle against cancer, and I'm not a soldier. This is not a heros journey. It's more an allowing and a deep recognition of our interdependence. Right now, because I feel wondrously great, it's not so hard, and I know it may change. And then I'll meet that. 

I am curious about this human experience, well aware that I'm far from the only one on this path. 

Coming back to our cultural narrative of disease and death as a failure I recognize the narrative and the impact it has on me, but I know it's flawed and have a practice that's counter cultural in that sense. (Death or impermanence is central in Buddhist practice). I often reflect on impermanence and know that death is inevitable (even mine) and an inherent part of life. Bringing it out of the darkness and into the light highlights that life is a gift, that we can't take for granted and gives us a sense of what is really meaningful. Death connects us. 

As I was reflecting on death in the first days after I was told I had cancer again, I had this deep and not verbal realization that most things would eventually fall away and what is left is just love. I know this sounds cliché, but it's not when it's felt and known on a gut level. There is a huge difference between knowing something and knowing something. 

But I've talked for a while now, and if you're still with me, thank you.

So just to end ... Of course I would so much rather not have cancer, but that's not a choice I have. And of course I have a deep hope, that this will be it, but I don’t know.

For me leaning into not knowing is a key practice in keeping an open heart. I can not know what the outcome of this treatment will be, so I practice trusting the process without being invested in a certain outcome. We never have the full picture. We never have control. Getting cancer and being in treatment brings it into the foreground, but it's always true. Normally we live in a kind of a addiction to the illusion of control and permanence, which may well be (one of the reasons) why Death is still a taboo in a our culture.

To be able to trust this process without being invested in an outcome helps me become more available to life right now and not wait for a better moment and an imagined life on the other side of treatment.

And that makes this life, here and now, with all that I'm given, so much more easeful and vibrant and rich.