It’s been a really hard week for us as we received news that the hormone therapy that had been keeping cancer cells from spreading was no longer doing it’s optimum work. I now have two nodules in my left lung. It’s not yet life-threatening (my oncologist makes sure I understand this). On the scan, you can see that compared to the mass of my lung, the nodules are pretty tiny. But those tiny things, if not contained, can spread and so to stay ahead of it, my oncologist suggested that we take part in a new study for a monotherapy which combines a protein and a chemotherapy targeting the cancer cell. For homework, we were given a bunch of papers to read so we would understand all the risks involved.

For the first time since diagnosis, I find myself struggling. Uncertain about which direction to go. I wonder if going through another round of chemotherapy will help. When I went through it the first time, we ended up having to postpone treatment three times because my leukocytes were tanking. It got so bad at one point that I had to have a blood transfusion. Weirdly, I was still quite energetic and healthy. A puzzle for my oncologist who thought it was strange that I wasn’t more tired. Looking at my values today, I noticed how hormone therapy did lessen disease activity drastically. However, the scans say the hormone therapy is no longer as effective as it was at first. Hence why we are considering this idea of going through chemo again.

I think that when we’re facing something for the first time, when we don’t really know what’s going to happen, we just go through things trusting that all will be well, but having gone through it and knowing what to expect, we start to weigh things a bit more. Do I really want this? And if there are other options on the table, maybe it’s worth looking at them again before making a final commitment to this trial? My doctor says that the length of effectivity from our existing options are a bit uncertain compared to this new treatment that she’s hoping I will get. But then, again, the trial is a lottery. So, I still have a lot of questions for when we next meet and I think it’s okay and it’s important to ask those questions.

By itself, the infusions don’t hurt. I made it through chemotherapy quite well, except for the final two sessions when I lost all my hair, including my eyelashes and my skin turned slightly grey. I kept teaching throughout treatment (except for days when I felt really sick), I still got to play with the band, and I made art. (And oh yeah, I wrote my first Dutch language SF story.)

I think of how in my work, I’ve sometimes used the body as a metaphor. Here, the body is a world. An anomaly has appeared in this world, it’s one that holds the possibility of taking over the world and consuming it. You just don’t know what needs to be done or how to go about it. Is burning it all down the right approach? Are there gentler and kinder approaches that will allow the body to find equilibrium and balance? What approaches will allow me to contain this anomaly so it doesn’t spread and kill everything else that’s healthy? How do you keep the systems that are healthy in that state of health? (Because I am clearly quite healthy except for existing nodules and small tumors.)

Yesterday, we had a visit from a friend who told us that maybe we have to let go of the hope of a cure. That I may be hoping so much for a cure that I forget that life is more important than the cure. And it had me thinking: if the doctors tell you they only hope to keep the disease chronic for as long as possible, what does that mean? Is it like having high blood pressure and having to take pills for the rest of your days? I don’t mind taking pills. It’s just that I never liked needles and I have developed a sort of traumatic response to being pricked by one. It doesn’t hurt, but I still cry. I say to the nurses: it’s the body that can’t help crying.

A part of me rebels against the thought of letting go of hope of a cure. Like: hello. There are advances being made everyday and all these new studies coming out. But at the same time, I also understand that nothing about this disease is predictable and what works for one patient may not work all that well for another. I understand the gravity of the situation and why I have to take it seriously. Which I do, except I get easily distracted by other things…like how all of what’s going on is great research. And I am still working on this novel draft and I am close to 70k. And hopefully I can finish this draft so by the time treatment starts, I don’t have to worry about the details but can focus on the rearrangement of certain things and filling in blanks like place names and character names.

According to studies, someone spontaneously getting healed from cancer without any treatment happens once in 100,000 cases. We still can’t explain why it happens or how, but it does happen. I’m not thinking of ditching treatment, btw. I just can’t help thinking about this fact that none of us knows just how long or how short our lives will be and none of us can predict what happens next.

We often think life is ours for the saying–we look at the future and it seems to stretch on into forever and we think we’ll just keep on going and doing and planning and racing from one moment to the next until we are faced with the truth of how life is ephemeral and we are ephemera. So, what does it mean to live and what do we mean when we choose life? What kind of marks are we making in the spaces we occupy?

I’m not yet sure what path of treatment we’ll take, but I do know that I would like to still be here on earth for a good while for the sake of my boys who have already lost so much. At times, I think that it just isn’t fair. And then, I think but we were never promised fairness in life. What we were promised is strength for the journey ahead.

Agyamanac Unay for stopping by. Blessings and peace be with you.