Where Will My Help Come From?: A Story of Courage and Positive Thinking in a Fight Against Elusive and Transforming Drug-Resistant Cancer

By Denis Nkala

Denis Nkala was a young management trainee, fresh out of graduate school and newly returned to his home country of Zimbabwe, when he met Fidelia aboard a staff bus on his way to the hospital to visit his mother. Her kindness and genuine concern for the plight of a stranger touched him, and their friendship blossomed quickly. Before long, her easy smile and air of dignity carved their way deep into his heart.

When they joined their lives together in marriage, they had no idea of the difficult trials they would be called upon to face. Fidelia, with her husband always by her side, battled various cancers in an effort to live long enough to see their children grow. Now Denis writes to communicate the courage, love, and faith that she held throughout her struggle.

This touching true story details the life of a wife and mother as she battles an aggressive, mutative cancer. Told from the perspective of her husband, who was her diligent caregiver throughout her twelve-year battle, this narrative encompasses the gravity and pain of a long fight with cancer as well as the suffering and dedication of those who supported the fight.

• Language: English
• Publisher: iUniverse
• Release date: Sep 17, 2013
• ISBN: 9781491705179

Denis Nkala

Denis Nkala was born in Zimbabwe. He holds a PhD in applied management and decision science and works for an international organization. He currently lives in New Rochelle, New York, with three of his children and fond memories of his wife, Fidelia.

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ISBN: 978-1-4917-0516-2 (sc)

ISBN: 978-1-4917-0518-6 (hc)

ISBN: 978-1-4917-0517-9 (e)

Library of Congress Control Number: 2013915332

iUniverse rev. date: 09/12/2013

TABLE OF CONTENTS

Foreword

Preface

Introduction

Chronology

Chapter 1:   Meeting Fidelia and the Early Years (1985-1991)

Chapter 2:   Family Challenges 1991-1999

Chapter 3:   Cancer Diagnosis and Surgery (1999-2003)

Chapter 4:   Post-Surgery Priorities (2002-2003)

Chapter 5:   Planning to Leave New York (2005)

Chapter 6:   The Second Diagnosis and Surgery (2005-2006)

Chapter 7:   Enchanted in Bangkok (2006-2010)

Chapter 8:   Missed Opportunities? (2008-2012)

Chapter 9:   Coping with New York, January (2012-July 2012)

Chapter 10:   A Time to Hope (January 2012-July 2012)

Chapter 11:   Interlude, Room-Mates

Chapter 12:   Where Will My Help Come From?

Chapter 13:   Superstorm Sandy and Leukemia, October 2012-February, 2013.

Chapter 14:   The Final Farewells (Friday to Sunday)

Chapter 15:   A Tribute

Chapter 16:   The Autopsy

Chapter 17:   Looking Back, Lessons Learnt

Acknowledgement

Glossary

Bibliography

Appendix 1:   Cancer Information and Help

Appendix 2:   The Last Song

Appendix 3:   To Mom

To Fidelia Nhlalwenhle: Always Remembered for your courage and inspiration.

To our children: You are carrying the torch of courage.

FOREWORD

There are many women and men out there who have experienced life-changing events involving loved ones. There are many of you men and women who became primary care-givers to your spouses as a result of a long-term illness which in some cases ended in the loss of your loved one. There are many of you husbands and wives who prayed for your spouses to be healed but they never got an answer. There are many of us who have held a spouse’s hand wishing to tell him or her that the situation will get better but it never did. Recall the many times that you have wished for a better tomorrow with your loved ones but it never came. So many times you looked the enquiring eyes of your children and wished you had better news for them about their mother or father but did not. To all of you this is your story.

In this book Where Will My Help Come From? Denis Nkala takes us through his life changing experiences as a husband and as a care-giver to his wife who suffered from cancers for twelve years. A resistant form of leukemia finally took her life. Denis writes about his wife’s positive attitude even during the many times when she was too ill to care for herself and as she increasingly depended on him for support as the disease progressed. The positivity rubbed on him as well as he made the choice to stay and fight alongside her.

Denis opens his heart on the impact his wife’s sickness has had on him but more importantly the choice he made to stay by his wife’s side unto death. This is not always the case, many relationships cannot take the pressure and end in separation. Many spouses walk away to start a new life as the pain of seeing their loved ones suffer takes its toll on them. Who can blame them? Those who choose to stay are the unsung heroes of this life struggle whose story needs to be told. The care-giver is both an audience and the main actor in a story that evolves each day. Experiencing the spouse’s challenges without being able to relieve them of pain even for one moment conjures admiration for what they go through and how they carry themselves. The story told by a care-giver may-be an auto-biography but is mainly about the other person.

I was a young student from Uganda in the United Kingdom when I met and married my Zimbabwean husband. We returned to an independent Zimbabwe where he quickly rose into television and media stardom. Seven years into our marriage he had a terrible accident that left him paralysed from the neck down. Life was never the same for us and our two children. He was now confined to a wheel-chair. It has been twenty-five years since Godfrey had that accident. The power of positive thinking and faith has carried us through.

Where Will My Help Come From? is such a book that many people with an experience like mine would like to write. Its purpose is not to narrate the story of the writer, but to bring out that unique fusion of lives between the spouse and the care-giver. Although told as a story, its purpose is to support other people that may find themselves in similar situations to be positive and to emphasize the role of the care-giver. The book has the added value of discussing complex cancer issues from a lay person’s eyes. A reader would be able to recognize and act on some cancer-issues as a result of the information provided. The book emphasises the difficult choices that have to be made about treatment options and how much easier it is if the care-giver and the affected spouse are working together. The uniqueness of the book is that it handles rather mundane issues in an interest-holding approach told with a lot of feeling and humour.

I have known Fidelia, the subject of the story, and believe that a positive attitude carried her through twelve years of fighting against cancers with Denis and the rest of the family at her side. The narratives of suffering from cancer and being a paraplegic may not be the same but I have known from my experience the great role that being positive, especially on the part of the patient, the care-giver and the community of family, relatives and friends plays a huge role in favourable outcomes.

Grace Majonga

PREFACE

A cancer diagnosis these days may not be the doomsday that it used to be. Several books have been written on the triumph over one type of cancer or another. However, for a number of people who find out that they have drug-resistant types of cancer, the knowing comes in several stages; hope gives way to uncertainty and anxiety; the body struggles with the invasion by disease and treatment drugs; significant treatment choices have to be made, disappointment deals its body blows, the mind grows weary; and the challenge to remain focused and positive becomes important. Life cannot be the same again; every day brings challenges and choices that may determine life or death. Life is lived one day at a time.

Successes in dealing with all this may not be as great as a victory over disease. The diagnosed person may only win some battles and lose the war against cancer. Nonetheless, such successes are important for a higher quality of life and peace of mind that everyone desires while they journey through the difficult times.

Fidelia cannot tell her story today. That story was told through the life she lived. While she had the life, whether in pain or remission, in her country or foreign lands, she lived it with courage. She won a lot of admiration from friends and medical staff alike for her attitude. The positive attitude and the way she made these positive choices can be helpful for others in a similar position. She had a desire for the story to be told as she loved other cancer patients and would be pleased if her story can help even one person to have a better day.

Denis Nkala

INTRODUCTION

Fidelia and I always wondered if we would have made the same or different choices if we had had as much knowledge about the cancers during the early days of her illness. The learning curve is very steep for a newly diagnosed person. There are also emotions and life’s everyday demands competing for space with the need to know more about cancer. Besides, there will be medical tests, discussions and treatment options that leave the patient exhausted. It is not unreasonable to assume that many patients will not be able to pick up a cancer book and read it. However, the patient may be happy to read a story.

I have written this book about a true life-story of an epic fight against drug-resistant cancer in such a way that it portrays the positive attitude Fidelia had in the face of a tough war against cancer and how she managed to achieve that. She lived a full life despite a decade of cancers; cycles of remission and relapse and gradual realization that medicine did not have an answer for her resistant cancer. Although this is not a manual of cancer, the book is written so that a person in a similar situation can recognise the disease, patterns and complexities. A story, unlike a manual, provides contexts, characters and feelings that a person diagnosed will likely face. Even more importantly, I have included analysis of some decisions we took, wiser with hind-sight; our mistakes can help others make better decisions.

Eleven years after we got married, at the young age of thirty-nine, Fidelia was diagnosed with cervical cancer. During a further twelve years of life along her side, I observed the courage that won her so many friends and love from those who knew her or met her during that period. Although the pain and agony could not be passed over to me even for a second of relief, she regularly expressed her positive attitude in words and actions that I have tried to capture.

In telling Fidelia’s story, I have tried to capture the wonderful times she had despite the disease, capturing heart-warming stories, humour and sadness along the way. It is a narrative of how this wife and mother stood true to her character even as the cancer re-invented itself and came back stronger time and time again. Her fight that started in her homeland of Zimbabwe continued in the United States of America and Thailand. The story evolves around the social and cultural contexts in these places. Fidelia had a deep-seated love for other cancer patients. The book devotes a chapter to them and their experiences, even though only briefly related, their stories help to show other ways people were living with the cancers.

I have a hope that this book will help the reader to understand cancers and most importantly, to give courage to the people that are diagnosed with cancer and the care-givers to think and live positively.

Denis Nkala

CHRONOLOGY

1. Concern about cancer, check-ups and Pap smear—September to November 2001.

2. Cancer diagnosed first time and surgery in Zimbabwe, June 2002.

3. Cancer diagnosed second time in the United States, June 2005.

4. Surgery, June 8, 2005

5. Chemotherapy and radiation treatment, August-September, 2005 (5 weeks)

6. Continued chemotherapy, October 2005-March, 2006, (6 cycles).

7. Abnormal white cells detected from March 6, 2006 bone marrow biopsy.

8. Also diagnosed with kidney disease (renal insufficiency), on Procrit from 2006.

9. Persistent Anemia from 2006, epogen prescribed and continued in Thailand until 2008.

10. Relocation to Thailand, June 2006.

11. Ultrasound test, Kidneys normal size and shape, March 2010.

12. Worsening anemia, Recormon treatment started in August 2010.

13. Borne marrow biopsy and diagnosis of Myelodysplastic Syndrome, November 14, 2010.

14. Vidaza Treatment in Thailand—from January 10, 2011-April, 2011 (4 cycles).

15. Bone marrow biopsy after 4 cycles on April 21, 2011, partial response to Vidaza.

16. Four more courses of Vidaza agreed in April.

17. Bone marrow biopsy on May 30, 2011, Recormon stopped as she was doing well.

18. Visit to Zimbabwe, June 8, 2011-July 4, 2011.

19. One cycle of Vidaza on return from Zimbabwe (7 completed).

20. Biopsy on August 8, 2011, still partial response to Azicitidine/Vidaza.

21. Vidaza recommenced in August 2011 (4 more cycles).

22. Recormon restarted in October 2011.

23. Bone marrow donor match found-November, 2011.

24. Vidaza Course 11 started on December 5, 2011 at 75% of recommended dosage.

25. Bone marrow Biopsy on December 13, 2011.

26. Recormon increased in December after hypotension.

27. Cycle 12 of Vidaza started on January 2 at 100% of recommended dosage.

28. Return to New York, January 23, 2012.

29. Vidaza treatment in New York, January-April, 2012.

30. Chemotherapy treatment in New York, May 2012.

31. Relapse to Acute Myeloid Leukemia-diagnosed November 1, 2012.

32. Admitted to hospital, November 1-7, 2012.

33. Transferred to another cancer centre, November 7-December 21, 2012.

34. Second Chemotherapy Treatment in New York, started November 22, 2012.

35. Second admission, January 3, 2013-January 28, 2013.

36. Clinical Trial drug treatment, January 19, 2013.

37. Last admission, February 18-March 3, 2013.

CHAPTER 1

MEETING FIDELIA AND THE EARLY YEARS (1985-1991)

The great drought of 1966 almost wiped out all my father’s wealth. It was a tragedy of major proportions for him. All over the little farm cattle and sheep fell never to get up again. Weakened from thirst and starvation, they eventually died of lack of food and water. The rain did not come. Great clouds would build and swirl over the mountain range to the east of the farm. It would drizzle, the light drops blowing away in the air. All around the little farm animals were still hanging in there, clinging to dear life and yet unable to pick themselves up and go. Opening the mouths of some of the most beloved cows for them to get some water from the little rain was childhood folly that my brother and I engaged in. The leaves from chopped branches off trees that we fed them with yielded no relief for the weakened cattle. It was too late for most of them. There was a lot of death in the farm, very painful to the young heart and spirit of a cattle herder. It hurt a lot. Every young cattle herder knows that some animals are special. They seem to know the vulnerabilities of a young boy and take it upon themselves to lead the herd. At an early age, cows are simply the biggest thing around for a herd boy and the loss of each is felt by the whole family.

Out of a herd of perhaps one hundred, only seven cattle remained at the end of the drought. The family relocated from the farm to the community lands. The land was poor and despite a lot of hard work the harvest was always meager. The younger children never experienced the times of plenty once experienced by older siblings. Those were the days when the family was one of the wealthiest in the region. To make matters worse, our father died within three years and our oldest brother inherited all that was left of his wealth.

A Courageous Woman

I always looked forward to go to church with my mother on Sundays. If she was well, she never missed a day at church. The walk to the church was six miles each way. It took some time and effort, most significantly in the heat of the early summer before the rains came. The path to the church cut through some dense vegetation, along the highest mountain in the