Fast Forward to Hope: Choosing to Build the Power of Self

By Indira Kaur Ahluwalia

Most people see a stage IV cancer diagnosis as the end of their story, but not author Indira Kaur Ahluwalia. For her, that was just the beginning.

Fast Forward to Hope: Choosing to Build the Power of Self recounts Indira's journey from fear to

• Language: English
• Publisher: New Degree Press
• Release date: Apr 27, 2021
• ISBN: 9781637300954

Book preview

CONTENTS

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FOREWORD

INTRODUCTION

PART 1. THE WHAT

SECTION A. THE TIP AND THE ICEBERG

CHAPTER 1. THE PAIN AND THE QUESTION

CHAPTER 2. DR. MASER AND THE VOICE

SECTION B. THE TESTS AND THE CONCLUSION

CHAPTER 1. THE ODDS AND THE MAMMOGRAM

CHAPTER 2. THE CLUE AND THE PENDING DIAGNOSIS

CHAPTER 3. THE REPORTS AND THE CANCELLED APPOINTMENT

CHAPTER 4. THE BIOPSIES AND THE WEDDING

CHAPTER 5. THE BACK AND THE BREAST

CHAPTER 6. THE PET-CT SCAN AND THE CALL

CHAPTER 7. DR. MASER AND THE PROMISE

CHAPTER 8. THE BONES AND THE SOUND OF LIFE

CHAPTER 9. THE TRUTH AND HAVING THE KNOWLEDGE

CHAPTER 10. DR. THEODOULOU AND THE VERDICT

CHAPTER 11. DR. SMITH AND THE ACTION

SECTION C. THE TREATMENT AND THE CHECKS AND BALANCES

CHAPTER 1. THE WAR AND THE BODY

CHAPTER 2. THE HAIR AND THE WIG

CHAPTER 3. THE CHEMO AND THE dTS STAFF MEETINGS

CHAPTER 4. LIFE AND CHECKS AND BALANCES

SECTION D. THE CHALLENGE AND THE STABILITY

CHAPTER 1. THE FEAR AND THE HOPE

PART 2. THE HOW

SECTION A. SCIENCE

CHAPTER 1. THE SCIENCE AND BUSINESS OF CANCER

CHAPTER 2. THE LESSER ACTORS AND HEALING

SECTION B. HUMANITY

CHAPTER 1. TOGETHERNESS AND ONENESS

CHAPTER 2. THE ROLE MODEL AND MY GRATITUDE

CHAPTER 3. THE CORE AND MY STRENGTH

CHAPTER 4. THE REASONS FOR LIVING AND MY INSPIRATION

CHAPTER 5. THE INNER CIRCLE AND THE UPLIFTING

CHAPTER 6. THE COMMUNITIES AND THE SUPPORT

CHAPTER 7. THE STRANGERS AND THEIR KINDNESS

SECTION C. FAITH

CHAPTER 1. THE DEAL AND THE COMMITMENTS

CHAPTER 2. FAITH AND RELIGION

CHAPTER 3. SPIRITUALITY AND HOME

PART 3. THE WHY

SECTION A. FACING LIFE AND LIVING WELL

CHAPTER 1. UNDERSTANDING MY OWN JOURNEY

CHAPTER 2. STEP 1: FACING THE TRUTH

CHAPTER 3. STEP 2: LIVE YOUR LIFE

CHAPTER 4. STEP 3: CREATING A CIRCLE OF LOVE

CHAPTER 5. STEP 4: THE DECISION

CHAPTER 6. STEP 5: BUILD YOUR NARRATIVE

CHAPTER 7. STEP 6: DON’T TRADE IN PROBABILITIES

CHAPTER 8. STEP 7: WAHEGURUJI KA SAATH (WALKING WITH A GREATER ENERGY)

CHAPTER 9. STEP 8: SET GOALS, BUILD YOUR MOTIVATION

CHAPTER 10. STEP 9: AMRIT

CHAPTER 11. STEP 10: KHALSA CELLS

CHAPTER 12. STEP 11: REMOVE THE CEILINGS

CHAPTER 13. STEP 12: STAYING ONE STEP AHEAD

CHAPTER 14. STEP 13: GIVING UP CONTROL

CHAPTER 15. STEP 14: VIGILANCE

SECTION B. THE APPLICATION AND LIVING

CHAPTER 1. THE RETROSPECTIVE—THE WHAT, HOW, AND WHY

Acknowledgements

Appendix

Meghan and Armaan, Sahiba and Arjan

May you always be in Waheguruji’s care and believe in yourself.

Foreword

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I have come to appreciate Indira Ahluwalia primarily serving as her medical oncologist, and despite knowing her over several years as a consequence, never really got her until reading through this book.

After just a few pages, one gets to know the trials that she faced maneuvering logistically, physically, and emotionally through the difficult realization, diagnosis, and subsequent resolution and (on her own terms) acceptance of the situation she found herself in. It is clear that this small tome is worthy of the read just for its story, and I would encourage that in itself. For those who find themselves in a similarly traumatic and upheaved situation, I think it is an important companion to what the diagnosis and the life-changing potential of breast cancer is, and then in her narrative, how to remain in control and, in fact, grow from this initially seemingly devastating event. This is an inspiring read for the patient, family, friends, and all who are touched by the diagnosis of Breast Cancer.

Indira begins by walking us through the period in her life when tests first suspected the presence of breast cancer. We read about the hopes, prayers and denials, and the added trauma of being turned away from an office crucial in helping with the evaluation because she was late! (How often have we all waited for the doctor?) Then, we not only confirm the diagnosis but also find out that the cancer had spread to her bones. Fortunately, she had a very caring physician who, once recognizing what seemed to be the diagnosis, helped marshal her care and appointments. Indira ultimately finds her way to a reference cancer center and is quickly placed on track to start the appropriate treatment, and remarkably, her disease comes under control (remission). As she soldiers on, Indira appears to learn much about herself and the world of cancer treatments; the latter of which she shares through her insights and her championship in the section Science.

What I found moving was how well she tells her story through what must have been a tsunami of emotional distress. She offers personal descriptions of her family (parents, brother, and her own children) as she tells us about these important figures in her life, their meaning to her, and their major contributions in supporting her. She tells us about a cousin who comes all the way from India to the New York cancer center and how uplifting this simple sympathetic embrace was. She then weaves her Sikh religious beliefs into her story and punctuates getting through this time by leaning on this important aspect of her being. These vignettes are very satisfying as well as informative.

Although much of her story is personal, as I read through it, it seemed likely that other patients have gone through similar events and feelings. Many may recognize and take solace and find comfort in these stories, which reflect the terror of being led into the first chemotherapy infusion and the poignant description of losing her hair. Many of these experiences are probably common and well expressed to allow a relieving identification. I think this would have significant value to all concerned. I think it should be a reminder, and possibly an instructive opportunity for those of us who minister these treatments to our patients: there is a fragility to be concerned with even when we feel confident in our treatments, clinically.

Indira then closes, demonstrating, in my view, the strength that she has found through this undesired twist in her life. She challenges the industry of cancer managements and lays down what should be inalienable rights for all and what we should all champion.

This story is an inspiring read with insightful instructions, uplifting and worthy of the short time commitment for all those who do so.

—Dr. Fred Smith

INTRODUCTION

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Dr. Rodney Butch and I had developed an unusual bond. It wasn’t common for the head of radiology and a patient to engage, let alone be able to have candid conversations about the patient’s condition. After my fourth or fifth PET-CT scan, we stood in the corridor to talk for a moment. The effects of the sedative I had taken that morning to get through the scan hadn’t fully faded. Dr. Butch was telling me he had shared my first set of PET-CT pictures from May 2007 and the subsequent one from December 2007 with his class. He had then posed them a question: What is the prognosis of the patients in the two scans?

He had my attention now. Why was he showing my scans to his class? I panicked immediately, wondering how bad my scans must have been for them to have been made an example. Oh my God! I implored God as I called His name in a silent prayer—Waheguru.¹ Even as my thoughts raced uncontrollably, Dr. Butch calmly related his classes’ response.

The students were unanimous in their interpretation. They said that the May patient was not likely to live, but they were optimistic that the December patient had a good prognosis.

Dr. Butch said that it shocked his students to learn that the scans were of the same person—that the first patient had lived. Dr. Butch shared that he had wanted to use my scans to help his students understand not to predetermine outcomes in how they conduct the art of medicine.

I was diagnosed with advanced breast cancer and extensive bone metastasis throughout my skeleton soon after my first PET-CT scan on May 23, 2007. At the time, I was in a bad marriage and had two children under six. dTS, the company I led, born from my passion for equality, was reeling from an unexpectedly bad year in 2006. I was already doing all I could to survive, and I wanted to live. I felt I needed to live. Somehow, I just knew that I still had so much more ahead of me.

The dramatization of my chances for survival that Dr. Butch’s class analyzed was starker than I previously objectively understood. I stood still in front of Dr. Butch in the cool, dimly lit corridor, stunned. My so far tightly held rational thoughts collided with the profound fears I had been trying to keep quiet. I hugged myself and gently rubbed away the goosebumps on my arms. I tried to breathe. I struggled to hear that the December slides also represented me and my continued stability.

Dr. Butch continued talking, almost in awe that I stood before him now, still stable and with an excellent prognosis. What he said next pierced my consciousness and awakened the core of my very being: If you can figure out what’s in your bottle, more people will live. There lay the difference between life and death that I had seemingly understood without even knowing it. I called it faith then. Today, at the time of writing this, thirteen years and eleven months later, I am still trying to understand its power.

The significance of Dr. Butch’s message has remained nestled deep inside my spirit. Even as I struggled to intellectualize what the bottle represented or what made its contents life-giving for me, it nurtured my being in a way no other reassurances could have. It created hope intrinsically and slowly taught me to trust faith without doubt.

I have spent the years since Dr. Butch introduced me to my bottle trying to articulate what I understood spiritually about the elements of my potion. I have played with the ingredients of the elixir over time—increasing faith, pushing science, mitigating risks, negotiating with God, and always staying steadfast in my choice to live—to keep just one step ahead of the cancer. I have also tried to figure out all of its elements so I can honestly reproduce the bottle to respond to Dr. Butch’s edict.

Through this book, I relive my experiences to discover the lessons (perhaps even the ingredients of the elixir) that I internalized that continue to propel me forward one day at a time. I also incorporate what I have learned from the support of strangers and my own wisdom. Through my journey, I have found that when I have been at my most vulnerable, I have not been alone. In those moments, I have witnessed how little separates us from one another, especially when it comes to the crux of our vulnerabilities and the simplicity of our innate desires.

Perhaps the most important lesson I have learned relates to how often I feel powerless in my own life, and how I succumb to letting my circumstances control me. As I have stumbled my way through my challenges, I have understood that you can choose to hear your purpose and not give up; you can choose the path and the outcomes you truly desire; and you can choose to find your own courage and gratitude to build on the smallest hope to will yourself to live your life on its merits, on your own terms, and live it well.

In this book, I share how the cancer that could have killed me pivoted my journey from getting through life to living life well. Living life in the shadow of death has enabled me to accept my vulnerability and face life head-on. It has taught me to live without constantly yielding to doubt and uncertainty. On the strength of faith, the grace of humanity, and the efficacy of science, I found my way from fear to hope. Bolstered by my strength in fighting cancer, I found the license to fully discover and accept my personhood and consider my life choices in this hard-fought new context. This book is an homage to the journey of life. It is a tribute to the struggle of finding your own power and cultivating your own choices.

I tell the story about my life with cancer (the what), what enables me to continue to persevere even as I remain in treatment (the how), and why this journey was necessary for me and how I have molded my life based on what I have learned (the why). My words are raw at times, particularly about the early days of my story. Diagnosis, six months of chemotherapy, and maintenance of stability through IV-administered drugs every three weeks since and for the foreseeable future with constant testing and monitoring has been my trajectory. By finding and focusing on the glimmer of my North Star, I have walked through the dark tunnel of challenges to find my light.

What emboldened me to push forward through the stunning diagnosis of advanced breast cancer was my uncompromising commitment and sheer will to live. I had reason to live. My two little children, who still needed me, gave me a cause. My parents, who would have been devastated if I didn’t make it, gave me a reason. I knew I had to find a foothold to pull myself out of the well of fear. I accepted my vulnerability on the strength of my faith. I chose hope because I dared not consider the alternative. I made the choice to persevere. To fight with every ounce of my being—spiritually, emotionally, energetically, mentally, and physically.

My words are written for all of us experiencing the various calamities that are the hallmarks of our lives, and even these times. As we wrestle with our struggles, we slowly give up hope, start cultivating doubt, and allow fear to seep into our being. We accept that any shift in the status quo we live in is bad, that the cancer of our situation will destroy us, and we let the crisis overpower our spirit. I wrote this book because I know it doesn’t have to be so.

I write this hoping my children will read it. My greatest fear of not being alive to raise my babies made living the only conceivable truth I could accept. My two have seen it all, and I want to give them the respect of the full story from my perspective. I want my children, Meghan and Armaan, and my brother and sister-in-law’s children, Sahiba and Arjan, to know that anything is possible. I want them to see that if I can put one foot in front of the other, they can take on the marathon that is also called life. I want them to know they have enough to play this game fully on the strength of their being. My parents showed me how, and now it is my turn to pay it forward.

This book is a special salute to those who have lived with and those who are living with cancer. We each battle cancer in the best way we know how, and I honor our fight and the hard-won scars on our psyche and bodies. I believe much is possible with the assistance of science and perhaps even more with the might of hope to fuel our crusade. I am grateful to be able to exhale with you. This book is also for our caregivers and others in our ecosystem. We rarely tell you everything; sometimes to protect you, and, at other times, to buffer ourselves from those we love the most. Perhaps this can answer some of your questions.

This book also has a direct message for the cancer industry, which can be wrought with paralyzing regulations, revenue targets, and liabilities concerns. I want to live and be healthy, and as a patient-consumer, I ask that, above all, curing drives your mission. I wrote this book for medical professionals and big pharma executives as well, so you can see the disease from the other side. You have the capability to treat and encourage us as much as the ability to hurt us. In addition, I wrote this to give thanks to the researchers and scientists as much as those who willingly participate in clinical trials to bear witness to what you work toward. You help create our miracles.

Ultimately, this book is for people who have the odds, whatever they may be, stacked against them to find inspiration from their own challenges and themselves. I found my tools intuitively one at a time, and now I have a toolkit I can share.

This offering comes from my truth. I wrote to understand and honor the elixir so it can also create positivity for those who are weighed down by the burdens of life. I wish that my experiences provide you with some insights to fast-forward through your challenges and leapfrog past some pitfalls to find hope and courage.

Onwards. In chardi kala … eternal optimism.²

PART ONE

THE WHAT

SECTION A

THE TIP AND THE ICEBERG

CHAPTER 1

THE PAIN AND THE QUESTION

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The Pain and the Cane

I tried to lift my right leg to reach what seemed like the insurmountable first step to the doctor’s office. I held onto the railings with both my hands, my knuckles white, as I tried to coax my right leg higher. I took shallow breaths as my breathing strained with the effort. The pain held my body severely in its grip. My hips hurt. And my lower back. I was taken aback by how hard it was to climb these three steps. I lived in a townhouse, and just this morning I had been able to come down the stairs, carefully. I joked with my mother as I gritted my teeth and slowly climbed the third step, I may need to get daddyjee’s cane. I had always admired my grandfather’s carved walking stick.

It was late on this Friday evening in November 2006, and I had taken the last appointment with this doctor who I had seen once before. I didn’t have a regular internist. Originally, I thought I may have pulled a muscle in my back. As the pain worsened, I had begun to wonder if it could be a disc problem. It wouldn’t be the first time I had hurt my back, but this pain wasn’t getting better.