the cancer update

It’s a sign of recovery that I’m updating this blog more often. That I have the energy to finish writing a post on this blog is a big thing. Back in December, I would start writing and then end up not finishing because posting any kind of update cost so much effort. I still have some of that fatigue–but then in social situations where I think up words and then go–ah, it’s too tiring to say them.

One thing that’s helped me a lot through treatment has been the surprise called art making. I didn’t know just how much it would help me through the difficult days when I had no words, through the days when I couldn’t do more than sit on the couch or putter around the living room. A lot of times, my art making was me throwing color on canvas while I argued out loud with God. I think of the kind of upbringing I had were I had this idea that one was supposed to sit quietly in church and be really respectful when talking to God and use your best words because everyone else was doing that. But I have grown more convinced that God actually doesn’t care much for our pretty words.

I’m writing this as I wait for the results from my most recent scan. It’s funny how there’s always this feeling of tension after a new scan–it’s a moment where I tense up before I think: Ah, what’s the worst that can happen?

I mean, I had the “we cured you” talk, three years ago. And then three months later that changed to ” we thought we cured you, but actually we didn’t, and we don’t know if we can ever cure you. But this is the plan.”

I’ve had conversations where the scans were iffy. Where the results were non-conclusive but I was a good candidate for a clinical trial where I might get a chance at a new (as yet unavailable) drug. I’ve been through two trials and in none of these trials did I get the trial drug.

My last drug was Doxorubicin. It had this distinct characteristic of being red and in the lead-up to November, I saw some fake dextrose bags with red liquid being sold for halloween in shops. I made a joke about how my drug was the ultimate halloween drug. Doxo is scary in its strength and in its side effects and most days I was just out for the count after an infusion. The funny thing though was how it made me so hungry that I grew by 12 kilos in the months I was having the infusions.

I had six infusions of doxo as that was the trial requirement. By the sixth infusion, I was so relieved I felt like crying and cheering all at the same time. I just wanted to finish treatment and thankfully it looked like doxo did its job. Once again, we had the “we really can’t say you will ever be cured” talk. By that time, I was like: it doesn’t matter. I am so tired of hospitals and needles. I mean, I love my oncologist, but I would love if a time comes when I don’t have to see her anymore except for a social catch-up.

I’ve been out of active treatment for more than three months, but have to have a follow-up scan every two months. Each time, I almost forget until a reminder shows up that I have a hospital appointment.

I’m doing so well at physiotherapy that I’ve been moved to a program called Recovery and Balance. It’s a 12 week program towards recovery and at last night’s information evening, I had this feeling of: Oh dear, I didn’t know it was going to be this intense. I admit to being a little bit annoyed when I realised that I would have to rearrange all my planning around this program for the next 12 weeks.

But studies show that people who have gone through life-changing diagnoses such as cancer and its ensuing treatments, benefit a lot from programs such as the one I have signed up for. So, despite being annoyed, I have duly rearranged my agenda to make sure I can complete those 12 weeks.

Our physiotherapists tell us that it’s not just the physical that needs time to recover. Recovery is also psycho-social. It takes time to work through what’s happened and often people think it’s going well, but it turns out that there could be an underlying depression brought about by so much change and trauma.

I have to say that it’s when you’re going through hard times you’ll find what matters to you most and also you’ll see the people who will stick no matter how tough things are. It’s also in the aftermath of everything, when the busyness of hospital visits are over that you discover that there are people who were just waiting for you to have the energy and time to re-connect. I’m so thankful for those people. For friends and loved ones and for partners and fellow collaborators who refused to write me off because I had cancer. I’m thankful for people who kept me writing and who made the extra effort to reach out and ask me to submit and remind me about calls for stories. (By the time I was doing Doxo, I was just so out of it, I couldn’t even understand emails though.)

During one of our talks, I said this to my oncologist: Doctor, my life isn’t cancer.

Yes, my oncologist said. You are more than cancer. Your life is so much more than that.

I am thankful for an oncologist who sees that and who says those words to me out loud.

This post is a lot of personal, but I hope it will help someone out there who reads it.

To you who read this, thank you for reading. Blessings and peace.

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.