The blind curve of life — can I get thru it?

Face-to-face with mortality in my cancer journey

13 min readApr 27, 2023

It has been almost 3 months since my last blog post… a lot has happened since then. Some of it was so challenging and depressing at times that I could not figure out what to write about it. By the time I could frame my mind to write something, a new and even more challenging turn of events took place… setting me back from blogging.

Multiple times I thought of throwing this stuff to ChatGPT to see what it could come up with. But it just did not feel personal and right… an experiment for another day.

Something happened this past week that drove the pillar of my life, Monika, to push me to find the courage to blog again. This blog includes health updates, physical and mental challenges besieging me, and thoughts on how I take life forward.

Let me recap some of the bigger medical things that have happened these past few months.

In February, I started to have mid-back pain. I went from feeling totally fit to being unable to walk properly in about 10 days. I was on vacation in India at the time. The MRI of my back showed significant compression of the thoracic spine from tumor lesions bulging out of my vertebrae and pressing the spinal cord channels. I underwent urgent radiation treatment in India and came back to the US in a very painful state. It took two weeks after the treatment for the pain to start settling and I became pain-free over the next month.
But the nerve compression left me with weakened positional sense in my feet. That, along with the loss of significant strength in my legs has made my walking/balance difficult, which I am still recovering from.
A new scan in February showed that my disease has now spread to the bone marrow also. This has led to low cell counts which have not recovered sufficiently; a barrier to future treatments as most treatments will further lower the cell counts (myelosuppression).
Another biopsy found that my cancer had now mutated to an even more aggressive kind. It is no longer a pure adenocarcinoma (prostate cancer). It has a neuroendocrine component. This finding and #3 above now eliminate me from being accepted into any medical trials.
Chemo is the only current viable treatment option, that we started on March 1st. That has also been “stop-n-go” due to further myelosuppression just after a few reduced dosages. I needed a couple of blood transfusions in the past month to prop me up.
Just as I was settling into all this and learning to deal with my new reality, I started to feel numbness on my face in the past few weeks. MRI from a few days back now shows tumor lesions in my skull pressing against nerve channels related to the face and brain area. A week back, my distance vision got messed up, further complicating my ability to drive and walk properly (vision helps compensate for feet sensors that have been impacted since Feb). I will now be starting another round of radiation to the skull area to address these issues.

A blind curve on the road of life — not sure where things are going with cancer aggressively growing and no good systemic treatment options left on the table.

Redwoods Forrests, Northern California, taken Feb 2022

Unlike earlier blogs where I shared my journey through my PSA chart, I am not going to do that here or likely in the future. Let’s just say that the PSA is too high now, and with the neuroendocrine mutation of cancer, it’s not a pure-play indicator of disease anymore; symptoms and health are.

Dialogs with doctors vary from the fact that with the aggressive prostate cancer mutation (CDK12) that I had, the average life of patients with that mutation is around 2 years, and I am clocking in at 4.5 years of disease now. So, I have done well, and the path forward may be more palliative care than aggressive treatments. I know very well and have accepted that at some point I may not have much choice left and that palliative care may be the only realistic path forward.

But for now, it does not matter how far I have come, but how much further can I push the envelope and keep a meaningful quality of life.

That quality of life has taken a big hit in the past 3 months and new challenges seem to keep coming at me at an uncomfortable pace. I am experiencing my ups and downs and trying to keep calm and keep the family calm. But it’s not easy. That’s why I decided to write this blog as Monika asked me over the weekend,

“Can one maintain strength through all this?”

Clearly, I did not feel like asking ChatGPT to write about this situation.

Relationship with God, Faith, and Prayer

In this phase of life, I run into a lot of comments from people along the lines, “God will take care of you”, “Keep the faith…”

What does God taking care of you really mean?

Do prayers and faith change your destiny,
or do they give you the courage to face your destiny in a graceful manner?

Interpretations vary; given my Indian heritage, there is a huge faith-based culture of praying, chanting mantras, and guidance for many other protocols and worships. And that’s true perhaps in many other cultures as well. I get inundated with suggestions from so many well-wishers all around me, and all in a genuine effort to help of course. My bookshelves are full of many unread spiritual books… sent by friends. If I were to implement many of those practices in my daily life, a significant part of my everyday routine would be filled with just those activities. Would that change my destiny?

Is God transactional in nature?

Since my cancer journey of 4.5 years, my faith and relationship with God have evolved. I always believed in the concept of a superpower (God) that’s there, looking after us. It is much beyond my ability to understand that superpower, but I acknowledge it is there… and I just kept the faith.

In my adult consciousness, I don’t recall ever asking God for anything specific. I don’t recall defining faith as anything more specific than the abstract concept that if I am a good human (creating good karma), I’ll be taken care of. What it means is that have I never established nor believed in a transactional relationship with God — No Quid Pro Quo — that if I do this then I get that from you!

Do I have to pray to Him/Her daily in various modes to have a bright light shine on me and direct my destiny? Rightfully or wrongfully, I have not come to terms with such a transactional relationship with God. That would seem like a very devious plan on nature’s part.
Or is the role of prayers, meditation, and various protocols to give me peace of mind, channeling my energy in ways that allow me to make peace with my destiny and journey towards it? Is its purpose to drive acceptance and keep me calm and happy to walk towards my destination — whatever it may be and that I cannot really change?

My faith currently leans towards the second interpretation! I would love to hear your opinions on this topic!

What is the Purpose of Life: Do we really get to know it, or do we just march towards it?

There is a belief that everyone on earth has been sent in their physical body with a purpose. When that purpose has been carried out, there is no need for the physical body to be present. It can be recycled for the next phase of the soul’s journey.

As a hardcore “type A personality” for most of my life, I have always had a long and grand roadmap for myself on what I want to do in life. My cancer journey threw a complete wrench in that in what I considered early mid-life… forcing me to change course completely and to acknowledge my own limitations on the fact that I could not control my life. I needed to focus on what I could control and was still able to do. That mattered more than my earlier roadmap of life.

I now focus on finding calmness and happiness in getting to my pre-destined destination when and how I get there. My prayers are limited to being able to harvest all the good energy/prana of this universe to give me the strength to continue my path.

Give me the energy and power to channel it. Aurora Borealis in Alaska, Mar 2022

If the purpose of all spiritual practices is to find that peace of mind — then is the path to that similar for everyone, or do you carve your own path that makes the most sense to you?

My interpretation is the latter.

My way of finding mental peace and happiness

My mental peace comes from being able to do things I love to do for myself, my family, and my loved ones. Is that the better way for me to find peace and happiness in my journey? Knowing that I am leaving behind something for others, and being able to express gratitude to the world for already giving me what it has given me.

One can argue that that list of things to do can be very long, and never-ending, hence you will never be satisfied. I have had so much desire to travel all around the world with Monika and spend more time photographing and capturing the beauty of nature and cultures everywhere. I am grateful for having been able to do a lot of that in the past few years. But my current physical condition and vision issues are making that seem impossible for now. While the wishlist will never be complete if I have matured to know when to be able to pivot and not feel sad/remorseful about it, then am I still at a better place focusing my energy on doing things I love to do than spend a lot of time every day in spiritual practices?

I believe one should take the path that works for them, not what others prescribe. Listen to every good idea but do what you believe helps you to manage your journey.

There are some Buddhist pearls of wisdom about happiness — being a minimalist, being grateful, and not blaming others — all essential ingredients to finding happiness in life!

Being a minimalist doesn’t mean not having goals and ambitions — but how you approach them and pivot as needed. We often wonder WHY we are in this situation in life, but don’t blame anyone or unduly regret things. If we are grateful to the world for what we have, not what we are missing, and are action-oriented in doing things that give us peace of mind — is that the right way to lead our lives?

I hope so and think so, as I cannot find another way to look at this equation from my vantage point. It’s about harvesting energy from our environment to find peace — and I believe that path is very individual to everyone.

This also doesn’t mean giving up Hope.

Action is the most powerful tool we can control — whether doing research to continue finding better treatment options or doing things that give us mental peace. Actions drive engagement, and engagement drives hope for me.

Hope is essential in life… while acceptance of the situation and pivoting is critical for peace, hope is equally important.

Recently I read “Man’s Search for Meaning” by well-renowned psychologist Viktor E. Frankl, about his journey through WWII concentration camps, and what it meant to keep living. It’s a well-documented book, so I won’t repeat the details here, but it’s a classic read on keeping hope alive.

Gratitude

Over the years we have developed a very large community of well-wishers who share that they AND their whole community is praying for us — extended family prayers, prayers in churches, mosques, and temples, as well as an ex-colleague praying for me at the Jerusalem wall.

Recently Monika asked me, “How are you grateful to all the people who are so invested in our well-being?”

After a few moments of introspection, my response was that there is no way I can know every extended person in the community that’s praying for us and personally thank them… we, of course, do that when we interact and hear from them and keep asking them for continued support. But it’s not a transactional relationship of gratitude one-to-one. All our lives we have been doing something to create influence in the community and touching the lives of people in our family, friends, and workplaces. That is helping us get that energy back from the community. What we focus on is to just keep doing that. Continue influencing others in a positive way and they will give back not just to us, but to others around them too — multiplying positivity in the world. That’s our way of expressing gratitude! Even writing these blogs is part of that journey to share and hopefully create a positive influence.

I have expressed a long list of issues at the beginning of the blog about what’s not going well with my health… and believe me, the past few months have not been easy, with many dark moments as the speed and seriousness of issues popping up have thrown us off balance (literally speaking!). My goal for the past few months has been to be able to travel and celebrate my daughter’s graduation from NYU Tisch in New York in person in mid-May. I am mentally determined to make that happen… but it’s an unpredictable life even in the short term.

Can one ever be strong enough to give up all this and not flinch?

I know I have gotten good at pivoting and accepting, but I cannot say that it’s easy and without tears. In those moments, I have to sit back and think of being grateful for what I have been able to do, and not what I may have to keep giving up.

My list of gratefulness is very long… but here is a short version of what I am grateful for:

So much love and support from family, immediate and extended friends circle, their extended communities, and readers of my blog that keep sending me encouraging thoughts and have become part of my journey.
All the positive vibes people send, and prayers as it is helping me harness the collective energy of this universe that I am personally incapable of harnessing myself.
The extensive travel we could do last year, and most recently India trip where I could meet a lot of extended family and friends after many years.
Patients of Prostate Cancer Communities that I am part of for extensive dialog and support I get on dealing with the journey — especially the advanced and very determined patients of the Cancer Hacker Lab that help keep finding a way to collectively push the envelope of care available to us.
My medical teams continue to find ways to push the envelope and guide me on my medical journey, finding options to keep me going.

As I said, the list can be very long but let me just curtail it here. I have had a good life, not easy and simple, but overall, a good life. If truly my pre-determined tasks for this life are done, then I should find peace in that… leaving that judgment in the hand of God.

Fears

Do I still have fears? I would say less for myself, but it would be ingenious to say that I don’t for my immediate family, especially my wife Monika. Kids are young and will figure out their lives. But the vacuum one leaves behind in the life of your beloved partner of so many years (we just marked our 27th anniversary) may be harder to fill… it does not matter how prepared you are.

But I have to just tell myself that every soul has its own journey and we as humans have a finite interaction time to influence each other, and individual journeys will go their own way.

Hope

A friend recently shared the following quote from Italian actress Sophia Loren

“When I got enough confidence, the stage was gone. When I was sure of losing, I won. When I needed people most, they left me. When I learned to dry my tears, I found a shoulder to cry on. When I mastered the art of hating, someone started loving me from the core of their heart. And while waiting for light for hours and fell asleep, the sun came out! THIS IS LIFE! No matter what you plan, you never know what life has planned for you. Success introduces you to the world. Failure introduces the world to you! Always be happy. Often when we lose hope and think it’s the end, God smiles from above and says Relax Sweetheart, it’s just a Bend, not the End!” — Sophia Loren

While it’s a very inspiring and poetic quote, we know that cancer does take a lot of lives… so the end is not an unrealistic outcome for many. It’s a matter of how we keep fighting in between but be prepared to face it when it’s time — with grace and calm.

I hope I will do that, but in the meantime, I am keeping the Hope alive that it’s a Bend and Not the End!

My sweet daughter was talking to me about hope on the phone a few days back and she said, “Dad, Hope is the Elixir of Life” — Amen to that!