personal stuff

Recovery and balance after cancer treatments

/ RCRuiz / 2 Comments

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.

On my mind today

/ RCRuiz

One of the marks of a good leader, my father said, was the capacity to encourage others to make full use of their talents and to make others grow into their gifts. It’s not about having the loudest voice or being the most visible, it’s about thinking on how we can help others discover and become their best selves.

My Mom also used to tell me that the sign of being a good teacher was when your student outgrows you and no longer needs you.

I think about these things because one of the writers who came to attend the six week workshop I gave for Other Futures (and who I’ve been mentoring a bit since then), was accepted to the Clarion Workshop. It is quite a milestone moment and I feel like a proud mama bird watching a fledgling spread their wings.

Last Saturday, I got to do one of the things that brings me joy. I got to work with young people again. This is a thank you to Lana Jelenjev and the Neurodiversity Foundation for inviting me to give a workshop to young people between the ages of 11-17 as part of celebrating Neurodiversity pride day.

There’s something about the way young people approach the act of creating together that makes me so hopeful. I saw the will to encourage one another, the willingness to compromise and make space for each other, and the readiness to help when the other person gets stuck. As Lana’s husband said afterwards, we could all learn a lot just by watching the kids work together.

It makes me think of how we all have that capacity to create and work together within us. Maybe it’s just that some of us didn’t know that we could just go about it, or we’ve been so programmed with this idea of individualism (mine is mine and yours is yours), we’ve been trained to think so much in boxes that we forget the joy of collaborating. And then, there is this soul-killing thing which I’ve sometimes observed in the grown up world where people think the important thing is to be better than someone else, win the most awards, have the most fans, make the most money, sell the most books…that sort of thing.

Life and art and the creation of story are not a competition. It’s not about having the best words or the coolest ideas, it’s about feeling safe enough to share what you love that make life and art and creation beautiful. What I loved about Saturday’s workshop was how I got to see young people bounce ideas off of one another in a space where they feel safe from being judged or found wanting, they just went ahead and talked about things they loved or were passionate about and they made space for each other to include those things in the worlds they were creating.

This method of creating together is a practice not only in worldbuilding but also a practice in bridge-building, in compromise and collaboration.

We could certainly do with more bridge-building and collaborating in these turbulent times, because it often feels like we have forgotten concepts like meeting each other halfway and compromise. We think we have waited a long time for change to happen and we would really like for change to have happened yesterday. The problem is, we live in a world that’s run by systems and systems are slow and resistant to change. As a good friend said to me: “you think maybe by being in the system, you can change the system, but it’s such a complex thing because by being in the system, you somehow become part of it.” I really don’t know what the answer is. We can only do what we can to the best of our abilities and hope that the little that we do will create some change no matter how small.

This week, I was in conversation with a dear friend, we also talked about this same thing. She told me about how she learned to think in terms of “good enough”. Perhaps it’s not the ideal change, perhaps it’s not the big change that we wanted, but maybe it’s good enough for now. How change happens in increments of time, by checking in and finding out whether a recalibration is needed. Maybe we can move forward a little bit more or it could be that we have to just be satisfied with good enough until the next check in moment.

I think about the words “good enough” when I have the conversation with my oncologist later in the day. I ask my questions and she patiently explains her interpretation of the data. It’s not yet where we want to be, but it’s good enough for now. And while the ideal would be to be completely rid of all the tumors, nodules, lesions and bad cells floating around, a stable or chronic state for a long period of time would be good enough.

It may sound like a strange comparison but I make these jumps in my head because that’s how the brain works. I think: it’s okay to not achieve the ideal all in one go. It’s okay to take it step by step. The important thing is to remain open and curious, interested and ready to look into options and points of compromise. Yep. I’m making the body and world parallel again.

Today, I’m speaking to my body. I’m thankful because I have a strong and sturdy body that has withstood a massive operation and all the treatments so well. I am thankful that I am able to work at regaining the strength and fitness that I had before it all started. I am thankful for the spirit that lives in me, that reminds me to take it one day at a time. I am thankful for today. Thankful that I can hug my son and tell him how proud I am of him (he’s having a bit of a tough time atm). I am thankful for friends who have reached out to me, for loved ones and for people from surprising places who tell me they are sending healing thoughts or praying for me. There’s always something to be thankful and joyful about.

As long as we have life in us, we are not without purpose. We are here to make as much of a difference as we can make. Sharing our stories, passing on our experience, strengthening and encouraging others to spread their wings and fly–discovering things, making memories (all those other things) remind us we are alive. As long as we are in the world, we can make every moment count.

Agyamanac Unay for stopping by. Blessings and peace to you who read these words.

the cancer update

/ RCRuiz

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.

Hello 2024

/ RCRuiz

I am learning how to do freehand protraits–relying less on a grid and training my eyes and my pencil. I still need to work on proportions, but the results have been surprising. Did you know that turning a picture upside down will actually help you focus more on shapes and lines and will give you a more satisfying rendition than if you are looking directly at a thing? For most of 2023, I had to practice at home by myself as my energy would often run out and I would end up having to skip art classes.

Towards the end of 2023 though, I was able to attend five art classes (what luxury). It became important to me to go to class with a goal. What is it that I’m struggling with, right now? What questions can I ask and how can I put the answers to practice when I am unable to attend class?

There are so many similarities between making art and writing and life and the parallels fascinate me. Because we often start out with a draft–with an idea of where we would like to go–or in my case, I sometimes find myself caught up in an emotion and I let that emotion move my body and take me to what comes out on the canvas. I suppose I am very much a pantser on canvas as I am a pantser with words. Portraiture though is teaching me the discipline of looking and seeing and translating what I see in lines and shadows and angles on the page. We don’t know what we’re making until we see the finished project and even then, it can be tempting to keep tweaking. For the artist, the art is learning when it’s time to stop. There is no such thing as perfection in art, simply the question of: have I managed to convey what I wanted to convey? And does the meaning the viewer attaches to the image make me say: Oh…that interpretation works just as well.

It is satisfying though when you get your meaning across and it’s the same with working with words. Stories work when they mean something to the maker and to the person reading or receiving the story. And in this way, stories become an act of co-creation. The writer creates the world, the characters and the story, but the reader attaches meaning to it and the art becomes the ability to draw the reader in and invite them to create together with the writer.

I’m not a very good fanfiction writer but I find myself in awe of writers of fanfiction who expand the universe and the worlds of stories that have captured their imagination. To have a fanfiction made of your work is, I think, the best possible compliment an artist can hope for. Why? Because it means you’ve made something that has become full of meaning for another person to the extent they wish to co-create with what exists.

Life itself is an act of co-creation. We co-create together with God and with our fellow inhabitants of the earth and together we weave this massive story that is the story of humanity. And it sucks a lot at times. It makes us cry and feel frustrated at times. It makes us angry. It moves us. It makes us want to hit out and hurt someone sometimes. It makes us decide to take action. Co-creating means, we don’t just let life happen. We decide to take part in life becoming.

Reading back, I think this is what 2024 is shaping up to be for me. I spent 2022 trying to stay alive, trying to recover, trying to survive. My 2023, had me learning how to deal with setbacks. It had me on a path of discovering what it was that I really wanted to keep on doing. Here I am in 2024, still alive. I am present. I am doing what I need to do, here and now…bedhead and all.

Agyamanac Unay for stopping by. May peace and love be with you.

March 7,2016

/ RCRuiz

Heartbreaking news reached us on Sunday evening. My beloved sister, Weng, passed away after a bout of a pneumonia compounded by problems with her liver and her blood. She went quickly and did not suffer long.

I have no words for agony.

Loss followed by loss. Sorrow upon sorrow.

My sister has gone from this world.

1 a.m. thoughts

/ RCRuiz

It’s one in the morning when the doorbell pulls me from my sleep. Our backyard is dark. Everywhere upstairs is dark. I wonder if the doorbell was a dream or if someone is even now, breaking into the house–although why they would want to is quite beyond me.

Finally, I gather up my courage, get out of bed and walk to the landing. Downstairs is bright with light. My eldest son is still up–playing a game. It’s too cold to go downstairs so I decide to send him a whatsapp instead.

My son, I write. It’s past time to go to bed. Put away the playstation, back away from the tv, lock the doors and go to bed.

My smartass eldest son apps me back: W8. I need to finish one more thing, then I’m done.

I try to find a comfy spot and go back to sleep, but I can’t.

The bulbs in our rooms need to be changed. We need to think about putting lights in our backyard. Why didn’t I take something practical when I was in college? Something to do with electrics would have been handy right now.  Of course, there is always the internet.

Still Alive

/ RCRuiz

 

 

I don’t know how to answer

when people ask me how I am.

How am I supposed to be?

I am still alive.

I breathe.

I ache.

I move through the motions of being.

Words taste like ashes in my mouth.

I am  here.

In the land of the living.

 

Movements through sorrow

/ RCRuiz

One of the messages sent to me says that the funeral was as beautiful as one can call such a sorrowful event beautiful.

After the death, there is no real time for grieving.  An undertaker must be summoned, papers must be looked into, one must decided how the announcement of one’s bereavement will look like. The mind is so occupied with the order of work–one realizes this is for the last goodbye.

I didn’t want a sorrowful burial. Rather, I wanted my sons to remember the joyful moments. That we were still able to have these years together–to know the man that was their father–to be able to know what it’s like to be accepted without complaint. To say goodbye to someone who accepted every aspect of who I am–who loved his sons unreservedly.

It was a beautiful fall day. The sun came out, the weather was mild, more than 200 people showed up. My heart overflows with thanks for the messages coming from all over the world, for the chain of support that reminds me that I am not alone, that we are lifted up on the hands of those we don’t see as well as those we see.

My beloved friend calls me and tells me of the stream of support. I want to weep.  Faces pass by us–old friends, new friends, neighbours who have become dearer, loved ones who become more precious–they have come to bear testimony.

My sons and I stand beside their father’s grave. I look up at the sky and watch the clouds and the changing colors of the trees. I am thankful even as I mourn.

Grief

/ RCRuiz

My sons have lost their father. My mind is still trying to catch up with reality.

There are no words for grief.

Yes. I am thankful my sons knew their father. I am thankful for the years of life spent together. I am thankful that I didn’t break down and scream and wail when I buried my husband. I am thankful that I could maintain a facade of strength for my children.
I wake up at 4 a.m. wondering what happens next. What do I do now? What will happen to my children?
Someone tells me stories of sons who have lost their fathers at a young age–of how sons mourn that loss even into later life. They tell me there are moments when children will want no one else but their father. I understand this. I comprehend what people are trying to say. I understand, things will never be the same again. I understand that the future has become even more uncertain than it was.
Who will fill up that loss? How do I fill it up? How do I become father and mother at the same time?
My eldest son steps into his father’s shoes. He tells me: Mom, if you do the laundry, I will clean the bathroom.
He clears up the kitchen without complaint, puts away clean dishes, stacks the cups, cleans out the sink, takes out the garbage, vacuums the hallway, the stairs, the floors.
My youngest son breaks into tears.
I miss Dad.
We all miss Dad.
We never got around to fixing the kitchen windows. My eldest son’s room is half-done. Our hallway is clogged with boxes from the attic improvement that will have to wait.
People tell me I should be proud of my sons, that my children are strong, that I am strong, that we will make it.
I am filled with sorrow for my children. I am angry at life. I also know others have gone through this loss and made it.
All I want is for my children to be happy. I want my eldest son to laugh again.

Our Sorrow

/ RCRuiz / 5 Comments

My dear friend and partner and the father of my sons is no longer with us.

He had a cardiac arrest on the 17th and was admitted to the ICU at LUMC after being reanimated. However, too much time had passed between and he did not wake up from his coma. Today, he was released from life support. He went swiftly and quietly.

Our boys were able to say their goodbyes to their father yesterday and I believe he heard them and carried their words and their wishes with him as he crossed the river from this life into the next.

The love and the warmth of friends, loved ones and kadkadua has lifted me and given me such strength these past few days. Today, I am humbled to find out about the extent of support being extended to me and my sons. I am deeply deeply grateful. My heart is filled with thanks for the kindness and warmth extended to me and my sons.

His body will be buried on the 27th of October. His spirit lives on with us.