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Breathe in – breathe out

September 3, 2023

Breathe in….. a little bit more…now hold….breathe out…

Just like that, the long-dreaded radiation treatment has started amidst a mixed bag of side effects from the new chemo drug or possibly remnants of the previous sessions. I’ve been looking forward to being done with the radiation before it even started. Anxious as I was, I wanted it to start so it could end.

So here we are on yet another floor of the now very familiar hospital. We arrived fortified with random hope – hope that it will all go well and that I’d have no long-term side effects. Well, there isn’t much else we can do except hope. The stark and cold room equipped with high-tech X-ray and radiation machines received me and contrasted immediately with the warm and comforting smiles of the ladies in white gowns. It’s hard to over-estimate how much it means to have a warm gentle hand on ones shoulder even for a brief moment when we feel so vulnerable. In front of this powerful machine, that is exactly how I felt. Humanity by her gentle touch lifted me up a little.

I also marveled at the fact that we submit ourselves to this harmful stuff willingly in order to be ‘cured’. I settled down on the bed under the radiation machine feeling the full effect of the irony. I also felt the familiar knot in the middle of my chest where dread resides.

Precision is everything it seems with radiation. The exact positioning of the body is critical so that the radiation beams go to the precise targets and avoid any unintended consequences like lung and/or heart damage. After some fidgeting for the precise positioning, the white gowns leave the room to operate the machines from afar. After all, this is harmful stuff. I’m informed that they will communicate via intercom. After lots of X-rays to confirm the positioning again, everything looks good to start the treatment. The breathing prompts start.

“Ok, Linda, when you are ready, take a deep breath in…….…. Some more………. Okay, now hold it……………………. (20 seconds later)……….. and breathe outtttttt. Well done! Now again, breathe in………. some more, let out a bit and hold……………………………….. Breathe out.”

A few minutes later, it was all done for the day – until the next day. And although the breathing and filling the lungs are meant to open up the chest and help deliver the beams to the exact locations, it did something else too — calming my nerves. The paradox of near-meditation like instructions and the deadly radiation rays is quite stunning.

Someone in Håkan’s circle told him that 2022 was the worst year of his life. Instantly, my mind offered the options for me, “Then mine was this year – the year 2023. Or maybe it was 2022 when I was first diagnosed with cancer.” Just as quickly I saw the futility of this exercise. What’s the point of that? Every challenge comes with its innate opportunity: learning, growing and even possibly rewards and fulfillment when overcoming them. So, was 2023 really the worst year of my life so far? Seemingly so on the surface. And I will have to say that it has been the year of reckoning when it comes to my changing appearance. My identity as a ‘healthy and fit person’ has been challenged. And the prospect of living a long healthy life has inevitably been called into question. I had many moments and hours of ‘hurt’, and disappointment, then finding resilience and strength, and finally expansion of myself. With my physical being diminished, I search for beauty and strength within instead. After all, I do have control over what’s within. Dwelling on what I don’t have control over has no rewards.

I pause more in my days, initially because I had less energy. But I also learnt that it is not about how much we do, but how we appreciate what we do. The smallest details carry their heavy weight in teachings.

Not being the strongest person in the room, I’ve learnt to receive compassion. In receiving, I become more familiar with humility – not a quality that I most frequented in my life before.

All the connections with friends and families have become more meaningful. In the face of death, we get real. We are less wasteful with time. We become brave enough to tell the truth and confess our love.

This has been a great year, not despite the cancer but because of it. The Yoruba people have a saying: “The same rain that falls on the bitter leaves also falls on the sugarcane.” Life is full of contradictions. What if the worst year of my life is my best? 😉

(In) Decisions

How do we make decisions? With our reason right? If we were buying a new car, we would want to know all kinds of factual things – like the cost, what’s the warranty, how much horsepower, fuel efficiency, colors available, the interior options, etc. etc. And the sales guy would provide all the details, options, hard facts, stats, fixed data. And after all that, we make our decision based on everything we’ve learned (we might still buy the car because it’s cool rather than practical but that’s for another blog).

Now imagine deciding on the pros and cons of radiation treatment following 6 months of chemo and surgery. We’d ask, what additional benefits would radiation treatment have? How much would the odds for full recovery improve? What are the potential side-effects, especially long-term ones that may show up in 20 years’ time? Could just another round of chemo be as effective, especially with the newer more targeted treatments? What are the stats for survivability with or without radiation?

Those were our questions and many more. And unlike the car sales guy, our doctors are unable to provide hard facts or point to recent scientific data. The complexity of cancer is one reason for this ambiguity. Another is that research studies take years to complete accurately so by the time the results are out, new chemo treatments are available, new discoveries of specific cancer cells have emerged and the landscape has changed. Then add to this, the enigma that even when a stat is available (90% of women survive this kind of cancer or 25% experience this severe side effect), no one can predict which group you might belong to. As a consequence, we end up contemplating probabilities in the vaguest terms.

So for the past month we’ve been debating, discussing, deliberating the pros and cons of radiation. Do we still need to go through this option? After all, the cancer has been removed and the lymph nodes are no longer cancerous. Or? Are there microscopic cells invisible to current science hiding in there somewhere, waiting for the poisons to go away? The answer is a resounding, “Maybe! We don’t know for sure but what we do know is that it COULD be there. Or you could be cancer free. There’s no way to check”. So our doctors (all of them) tell us that Linda should consider 5 weeks of daily radiation treatments just in case.

And that’s where we finally have landed. After a month of meetings, phone calls, pouring over research studies on-line and long philosophical existential exhausting discussions, deciding whether the risk of long-term side effects are worth the possible ‘maybe’, we’re going through with it.

My poor darling. I’m sorry in advance for the fatigue. The sleepless nights. The skin burns. The stress on your body and soul. We didn’t ask for this. No one ever would.

So, in the end, it’s a leap of faith. It’s trusting that we make the best decision based on everything we know and everything we don’t know, at this moment in time. We shine a light into the darkness and hope, wish and yearn that all will be well in the end. And who can argue with that?

❤️ Håkan

—————————–

Linda’s post-script:

I’m not afraid of death. I’m afraid of life that’s not worth living.

I kept coming back to this fearsome thought. At one point, the answer seemed very clear: absolutely no to radiation. Then next moment, I was not so sure anymore. What would constitute a life that isn’t worth living? What kind of health conditions would put ‘my life’ in the ‘not worth living’ category? In the end, we decided that radiation and its side effects may be worth the risk compared to the consequences of cancer recurring to start creating havoc in different parts of the body and vital organs. I haven’t made many decisions in life with ‘which one is less bad’ and choosing a lesser evil. In a way one can say that I have been blessed not being in that situation before.

Still, the decision is behind us. We’ll walk through it. This too will be over soon enough like everything else in life being what it is – transient.

❤️ Linda

Cancer – the good, the bad, the ugly – Part 2

We were expecting the pathology report to be shared at our oncologist meeting last Tuesday and I observed my detachment of the possible ‘verdict’ leading up to this moment. Of course, I would have chosen “a complete response” meaning no cancer cells remaining in the tumor that was removed through the surgery over “residual disease” (still cancer cells remaining). Yet, would the results have changed if I’d wished for one way?

So, I came to the meeting with 50:50 odds. The mentee doctor to my oncologist has yet to acquire experience in the field. I detected (or projected) awkwardness in her first question to us “Did anyone tell you about the pathology report?” It was telling which side of 50 I was about to receive. She was not really asking if I had heard from anyone else (because I wouldn’t have) but dreading to be the bearer of the news. I learnt in my life and sharpened my sensitivity to it during my coaching years that we have ways of trying to soften the impact of ‘bad news’, sometimes to protect the other party and more often than not, to protect ourselves.

So our bad news was that there were still cancer cells remaining in the tumour. This means that we’ll need to continue with more chemotherapy instead of just the targeted ‘herceptin’ drug therapy. This prolongs the treatment program by several months. That’s not the end of bad news though. Apparently, the kind of cancer I have is now determined to be estrogen positive (previously negative), and that extends the treatment program with an additional 5 years at the end of the chemo/drug program.

I was more confused than disappointed by the news. Was there an error in the initial pathology report? Or is my cancer mutating? Would we have had a different treatment program with this new diagnosis from the beginning? What is my prognosis now? What will be the quality of my remaining life? With a myriad of questions, immediately my solution-seeking and uber-planner brain started the process of alterations due to the news. i.e., we should cancel our trip to Korea scheduled for this fall.

Since this news, some of the questions have been answered. My prognosis hasn’t changed (so more likely to live than die in the near future), it is JUST a longer process. And no, it’s highly unlikely that my cancer has mutated but rather the first pathology report was incomplete and another biopsy at the time most likely would’ve captured the estrogen-positive result. Our oncologist didn’t request the second biopsy then because the treatment, either way, would have been identical.

The adaptable us processed the information separately and together and lifted ourselves and each other up. We will play the cards we are dealt. We will focus on what’s in our control. We are here today alive. We cannot even count just how many blessings we have in our lives including having each other on this rather bumpy journey at this time. Some friendships that have deepened are invaluable. This is a life and love-affirming journey, and I don’t see it any different moving forward.

So, friends, don’t be sad for us. Instead, celebrate with us our aliveness today, the connections that we deepen, the positive impact that we can still choose to make, and even the aspects of the ups and downs of our life trials and tribulations. Because we won’t appreciate the ‘up’ unless we have been down just the way we won’t appreciate life unless death is also our reality. We can always find light in the dark. For we can create it from within us.

With acceptance, gratitude, and courage

Yours truly,

Linda

The Truth Is Sometimes Hard to Hear

The truth is sometimes hard to hear

And harder still to accept

So much of our reaction fear

Of a future unmet

There’s nothing to make right

Why not throw away the oars

And let the wind be our guide

And watch the seabirds soar

In time, healing begins

And the sun will rise again

In time, love wins

Always my darling

Yet the truth is sometimes hard to hear

Our instincts to worry so strong

With the path in front unclear

It’s easy to miss the birdsong

Still, trust the universe this time

It’s good and kind

Don’t overthink, no hills to climb

Rest your weary mind

Yes the truth is sometimes hard to hear

But truth is like a compass at sea

We need it to find our way home from here

Back to the heart of our peace

Håkan

Another Milestone Crossed

Take a deep breath in, then out. Take a few more deep breaths in and out. Instructions from the anesthesiologist. It must have been barely my third breath and I was asleep like a baby. 6 hours later, I was woken up by someone calling my name. No surgeons in sight and no giant lights above my head in the recovery room.

The day started at the nuclear medicine department at 6:30 am in one hospital, then we drove to another hospital for the surgery. After what seemed like a lifetime of waiting, I was moved to the surgery room at 12:30 pm. When Hakan picked me up, it was after 7 pm. It was one giant long day. Without any debriefing from the surgeons, which seems a bit odd, we had to assume that the surgery must have gone as anticipated.

Walking out of the hospital into the chilly and sunny evening with Hakan’s hand steadying me, I felt like a stranger in an alien city. Anesthesia, nerve blockers and painkiller triple whammy certainly made me feel like I wasn’t on solid ground and more like afloat. Yet, another milestone had passed. With it, a sense of relief!

In the car on our way home, we talked about all the sweet and sincere well-wishes and messages that we received the past few days from our friends and families. We’re overwhelmed by so much love and generosity. And truly blessed.

I’m now recuperating, taking one day at a time. No major pain, no troubles so far. Just stiff, groggy and in need of rest. Next week we’ll meet the surgeons and we’ll know more about what’s next on this journey of illumination. Thanks for keeping us company. It’s so good to know we’re not walking alone.

Trusting the Universe (Surgery Day)

I know how to write songs. I know how to give presentations to large groups of people. I know how to drive a stick shift in Australia. I know how to make pickled herring. I even know how to whistle. But I have no idea how to surgically remove cancer cells from Linda’s body.

So this morning at 6:30 am we first stopped off at St. Paul’s Hospital for a sentinel node infusion (I don’t even know what that is). Later, as I dropped Linda off at Mount St. Joseph’s Day Surgery, I felt rather helpless. And thankful at the same time. It’s a weird ambiguous combination of anxiety, inadequacy, relief, nervous energy and immense gratitude. That there is this team of trained humans who have dedicated a lot of their time to learn how to find cancer cells hiding inside bodies, who know how to properly administer anesthesia, who know how to make stitches and dress wounds, who know how to reconstruct body parts and move blood vessels and all kinds of other things most of us have no clue about. So there’s that. And the blurry feeling of gratitude and helplessness.

Aaron Neville said it best:

“I don’t know much but I know how to love you. And that may be all I need to know”.

There Are Days Like These

There are days like these

Where nothing’s what it seems

There are times like now

We must get through somehow

Everything will still be here tomorrow

What we said today will still be true

Leave the pain, the fears and all your sorrow

Every day that dawns is here anew

There is love like ours

That’s bigger than the sea

There’s pain like yours

I wish were given me

Everything will still be here tomorrow

What we said today will still be true

Leave the pain, the fears and all your sorrow

Every day that dawns is here anew

There’s hope to embrace

And gratitude to make mine

There’s life to live

Before we run out of time

Waking Up

I woke up a bit too early this morning – too early and too dark to start the day just yet. So I stay in bed and let my mind wander – presenting a smorgasbord of various images and conversations, some in the past and some in the future. Then daylight expands slowly and gradually like ink absorbing on a piece of paper. Birds of different kinds start their days busily communicating whatever is important for them – some much louder, some much more subtle.

In his book Waking Up: A Guide to Spirituality Without Religion, Sam Harris says “How we pay attention to the present moment largely determines the character of our experience and, therefore, the quality of our lives.”

Catching ourselves on autopilot mode and observing the thoughts as if they were someone else’s is the moment that we give ourselves a break. It’s the moment that the spell is broken, and the quality of our mind exists. Now with a bit of distance to the thoughts, we give it a fair chance of more balanced interpretations.

In our lives, we are presented with various challenges and opportunities. How do we see them and interpret them? How do we respond because of our interpretations?

I have cancer. On autopilot mode, my mind can be making up a story of a victim. I’m extremely unlucky. My interpretation can be that this whole deal is unfair when I have led a reasonably healthy lifestyle. Why me?

Or I catch myself and alter the course of my mind’s trajectory. I can then choose to see that my unlucky situation is the result of random odds, and I can use this as an opportunity to expand in a way that hasn’t been available before. So far, the journey has allowed me to do just that. I’ve connected with family members and friends in a way that wasn’t available before. I learnt to rely more on others and to be more vulnerable. Acceptance is easier now than before. Going at a different pace, a slower one, allows for different viewpoints, different scenery. Like walking around in a new city gives us access to a level of detail that we are unable to experience if we’re driving around the city.

I also ‘live’ in the impermanence of life and accept this as part of my reality, more so now than before cancer. I have a lot less attachment to things, the status quo and even people as a result. I knew that 5 months of chemo would end one day and now the last chemo is making its way through my system. I know that a big surgery is scheduled at the end of the month and 6 weeks of recovery will probably be really hard. But I also know that it too will pass. Eventually, the whole treatment program will be behind us.

Death is not a scary monster anymore. It will come sooner or later. I’m even more convinced now than ever that we need to live an intentional life. It’s so short that we don’t have the luxury of time to squander it.

Having lived the notion of the end of my life, I am cognizant of what counts and what doesn’t in the end. People whom I care about count. The positive impact that I can make on people around me counts. What I strongly believe in and living this accordingly count. Now matters much much more than later.

What doesn’t count? Stuff doesn’t. Status doesn’t. Success doesn’t unless it is about improving the lives of others in some way. Material possessions certainly don’t.

The quality of life really resides in the presence of the mind. The relationship we have with our minds determines all the other relationships we have in our lives.

So I listen to the birds, I watch the sun rise and my mind is awake.

Miracle of Wings

Through a tunnel of snow we flew

Gasping and exhilarated

Across the edge of a cliff

With ourselves and all

We were floating – We had wings

We never knew existed

(they say they’re always there just waiting for a leap of faith)

And that was just it

A leap of faith we had just taken

Into the air racing like bullets

Drifting, flying freely to a shrine

Where “Importance” and “Meaning” live

With a cloud of snow behind us

We rush through and into and are surrounded by the warmth of understanding

This is extraordinary!!

How could we have ever known all these things

If not for a leap of faith?

Life. Death. Eternity and especially, the Miracle of Wings

Choices We Make; Choices We Don’t Make

Now with only one chemo treatment left to go, I think about the choices we will need to make soon. If no cancer cells remain in my body from the surgery and pathology report, it’s called a ‘complete response’. If there are remaining cancer cells still, it is called ‘residual disease’. It seems like regardless the oncologists and radiologists may recommend radiation therapies although I am given a choice to forego the radiation if the result is a ‘complete response’.

The doctors’ main objective, in this case, is to ensure that no cancer is present and prevents any cancer cells from returning. That means radiation. Without it, even a complete response may see cancer returning afterward.

My main objective, aside from beating cancer, is to minimize invasive measures, thereby reducing side effects and any long-term damage to my body while living cancer-free. So the options are complex and difficult to quantify.

So I think about choices.

There are a lot of events in our lives that we can consider ‘choosing’ moments. For some people, it may not occur to them as their choice. For them, I know choices can be paralyzing. That’s not me. I’ve always embraced choices and choices for me mean freedom.

We can choose to retire at age 45. A lot of people don’t consider that a possibility. Society dictates a defined retirement age, so this ‘choice’ only becomes available then but not before.

We can choose not to subscribe to the crazy rat race, and instead choose a life that is harmonious and life-affirming (not just for our fellow human beings but for all living things).

We can choose not to be offended even though someone said something offensive. We can choose to see these comments in the context of their own life histories rather than mine.

We can choose to buy a BMW and gain status or we can choose to unsubscribe to the ‘purchased’ status.

We can choose to deprioritize a very long-standing friendship that is no longer serving us because we are now walking separate paths, experiencing different things, and have evolved to be incompatible.

Choosing requires energy. Considering the benefits and disadvantages requires mental exercise. Choosing requires empowerment. Without perceiving power, choices are not real. Choosing requires responsibility. We need to take the consequences of our choices. Often, not choosing is a heck of a lot easier. We blame others instead.

Along this cancer journey, we have made some important choices:

We decided to go on the chemo treatment program with all the possible consequences. The odds of surviving cancer are significantly higher. We chose ‘my life’ over death.

That said, I considered the possibility of foregoing chemo. If I were to live the same life that I have had and just prolonging it, it seems like it is a bit redundant. But I reference back to my life purpose: “Do good by guiding people to their intentional and fulfilling lives and improving the lives of many through philanthropy”. Well, then I can be a positive force in this world. So I chose to increase the odds of life.

Here is the thing. I don’t want to just live long. I want to live healthily – until I drop dead. I’m afraid of living with the possible different long-term health problems from chemo/radiation treatments. With sore muscles and numbness in different parts of my body now omnipresent ever since chemo #4, I mull over the long-term consequences of radiation on top of chemo treatments and surgery. We’ll need a bit more information before our next choice.

“Life is a matter of choices, and every choice you make makes you.” John C Maxwell

We Are Connected

With Chemo No 5 fully working its way through Linda’s body, we are now contemplating the remaining treatment program with one more chemo session to go followed by surgery (May 30) and radiation later this summer. In the best possible scenario, Linda will ‘only’ need drug therapy for the remainder of this year, a simple infusion every three weeks with no harsh side effects. Or she may need another 9 months of chemo/drug therapy if there is residual cancer remaining in her body which we will only know once the doctors have seen the pathology report from the surgery. No matter which scenario, anything will be “easier” than the current chemo regime.

Still in limbo, we plan our lives ahead.

We’d rather be hopeful until we’re wrong.

Instead of dreading until we’re right.

In this fleeting and epic journey we call life, we continually learn, adjust, reassess, evolve. We are constantly on the move, even when we sit still. The earth spins us into the future with time ever ticking, adding up the minutes, hours, days and years we’ve been gifted to be here with each other. And we are connected, like the ocean and the sky.

And that’s what love does. Connect us, that is. That’s why we live together in groups, families, villages, cities and countries. That’s why whole societies are built. That’s why we prepare food for each other. That’s why we make things. That’s why we write songs. That’s why we smile at each other. And sing together. That’s why we go to work. Really, we stay in our little cubicles or rice fields because we don’t want to disrupt this love we carry for one another. Oh, occasionally we break, and as horrible as we can be to each other, this world really is a work of love… it hums along because we love, not because we hate.

It hums along because we love…. our fathers, our sisters, our friends, co-workers, our countries, and lovers, our gods, our home villages and cities, our fellow humans, this beautiful planet… it works because we love.

We are all connected. Like the ocean and the sky.

Breathe in – breathe out

(In) Decisions

Cancer – the good, the bad, the ugly – Part 2

The Truth Is Sometimes Hard to Hear

Another Milestone Crossed

Trusting the Universe (Surgery Day)

There Are Days Like These

Waking Up

Miracle of Wings

Choices We Make; Choices We Don’t Make

We Are Connected

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