The Butterfly Effect

By Helene Avraham-Katz

Cancer will always be part of my life, but it will never be my life.
This was probably the best decision I have ever made. Since October 2016, I have had many of the most difficult moments in my life, but I have also had even more wonderful times. It is amazing how a small moment can change your entire life, and how you see it. For me that moment happened when I was told by my youngest daughter to get off the couch, stop feeling sorry for myself, and go to work.
At that moment, I came to the realization that how I lived my life was totally in my hands, and I consciously made the decision to live my life to the fullest every day!
Dr. Steven M. Sorscher: I hope that those of you who read her memoir will be inspired by this remarkable woman’s story.

• Language: English
• Publisher: Helene Avraham-Katz
• Release date: Jan 27, 2022
• ISBN: 9781737127819

Helene Avraham-Katz

My name is Helene Avraham-Katz.I am a wife, mother to three wonderful daughters and two amazing dogs, but I am much more than that.I was born and raised in Port Elizabeth, South Africa. At the age of 22, I moved to live on Kibbutz Hanita in Israel. I met my husband Boaz and had three daughters, Netta, Eden, and Yahav.In 1996, we moved back to Port Elizabeth, for a year, to spend time with my parents. We ended up staying for six years before moving in August 2001 to Greensboro, North Carolina in the United States.In 2009, I started my own business and worked from home until 2019, when against all odds, after beating pancreatic cancer twice, I opened my store: “The Butterfly Effect.”The last few years have not been easy, but along with the difficult things, there have been even more wonderful ones.I have learned a tremendous amount about the importance of appreciating the small things in life, learning to live every day to the fullest without regrets, and not taking anything for granted.I had no intention of writing a book. I originally just started journaling for myself, but realized I wanted to share my story. This was probably one of the most cathartic, fun, scary, and enjoyable things I have done. If I can help anyone, even a little bit, by telling my story, then it will have been worthwhile. I hope you read and enjoy my book - I am excited to share it with you.

Book preview

The story told in this book stretches over three continents and a span of more than 30 years. Together we experienced so many things, but I think the time of the fight against pancreatic cancer really tested us in many ways.

When a person is diagnosed with a disease like cancer it is devastating and hard to grasp, but what is even harder is to decide next steps. How do we tell our children, our family, and our friends? How do we tackle cancer? It became very clear from the start that we are going to fight and do what is necessary to rid Helene from this disease. Helene spent days researching different options and eventually found treatments that saved her life. They say it takes a village, and indeed we had a village of helpers, an amazing and extremely caring medical team and our children and family to get us through this.

I always wondered how Helene went through all the treatments. Where did she get her strength from to keep on fighting? I admire her tenacity and can-do attitude, even when at times things were tough and tested every ounce of our perseverance.

This book is the result of hours of hard work telling a very difficult story. For Helene, this was a story that needed to be told, a story of struggles but so many successes, a story that has set her on a new and exciting path of her life. Being part of this journey continues to be my privilege.

With much love,

Boaz

Our fondest memories of our Mom revolve around bread. She will ritualistically make Challah every Friday afternoon. We cannot think of a single item of food every member of our family, not to mention anyone who tries it, can agree on like her Challah. It ties us to our roots and our traditions and is plainly a source of comfort we have come to look forward to and rely on.

It’s the memories of living in Greensboro and being able to come home every Friday to partake in the tradition of eating Challah, even after I’d left home. It’s a commitment my Mom made after my Grandmother died and will forever be a reminder of how special she was to all of us. –Netta

It’s memories of being taught how to make Challah because after Mom’s chemotherapy treatments her neuropathy became a challenge. The tradition was passed down to me and is now something I continue to do weekly. It serves as a reminder of her and our family Friday night dinners.

Eden

My Mom has always been the person I’ve looked up to most. Whenever I get good or bad news, she’s the first person I want to tell. She has always supported me and my dreams, and I will forever be thankful for it. She is not only a two-time cancer survivor, but also an amazing Mom and businesswoman. She even inspired me to open a business of my own. I aspire to one day be half the woman she is, and I am so proud of her for going on this journey. I am so grateful that she is here today to tell her story to you. I know the world will be better because of it.

Yahav

In the book Linnea in Monet’s Garden, Mr. Bloom and Linnea travel to Giverny, France, immersing themselves in Monet’s environment to learn about the artist on a deeper level. By seeing what Monet saw, the two characters understand the beauty, inspiration, and perhaps, even some of the feelings that influenced his painting.

By the same token, I have journeyed with Helene to many places, both physically and mentally, often seeing things through her eyes. Her perspective has given me strength, even when, ironically, it appeared she had no strength to give. In essence, her eyes opened my own, and now the world is a much more beautiful place.

Ellen

Introduction: Dr. Steven Mark Sorscher, MD

Wake Forest Baptist Medical Center

In 2016 Helene Avraham-Katz was told that she had inherited the mutated gene that most predisposes patients to developing breast, ovarian and pancreatic cancers. Around the same time, she had been diagnosed with inoperable pancreatic cancer. Such horrible news would understandably be overwhelming or even paralyzing to almost anyone.

As an oncologist I have had the privilege of caring for hundreds of brave souls. Whether they have chosen therapy or not and whether experimental or standard therapy extended their lives or not, many have confided in me that they considered one of their lives most important accomplishments to have been not in living longer but in knowing that they had tried to do what they felt was right for themselves, according to their natures and in doing so with grace and dignity.

Martin Luther King said that "the ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Helene's odds of surviving very long at all were terribly poor. The standard treatment options were arduous and the uncertainty regarding the efficacy of unproven and experimental therapies dizzying. In this moment of Helene's greatest challenge, she showed truly remarkable courage.

Helene researched her options, seeking out answers to the tough questions of which therapy might be best for her, and studied to understand how the inherited mutated gene might be important in understanding her pancreatic cancer. She moved forward with extraordinary tenacity and perseverance. She endured many chemotherapy drugs, surgeries, and experimental therapy and treatments for the pancreatic cancer, treatments to avoid breast cancer and surgery to avoid developing ovarian cancer.

Helene took chances with therapies known to unfavorably affect her quality of life that were based only on limited evidence of effectiveness. Over the years she handled both bad news and good news with equanimity and determination and she accomplished goals unrelated to her cancer diagnosis such as opening her own shop selling the work of local artists. She enrolled on an unproven trial of an experimental therapy in Pennsylvania in part so that future patients might benefit from the results seen for patients who participated in that trial. She has now been without any evidence of cancer since early December 2018. Like me and many others who know her, I hope that those of you who read her memoir will be inspired by this remarkable woman's story.

Part One: The Caterpillar

Chapter 1: The Diagnosis

It is almost four years since my diagnosis, and around this time every year I always seem to have a lot of memories overtaking me. There has been a lot going on in my life and overall a lot of really good and amazing things. I still feel so blessed - I am beyond grateful and will continue to try and find ways to pay it forward. One of the things that I still find very overwhelming is where did I find the strength to do what I have done?

I remember the day – it was about 6:00 pm on Thursday, October 13th, 2016. I was outside in the garden when one of my doctor’s partners called me with the horrifying news that I had something in my pancreas. She told me very matter of factly, with no emotion, that I had what appeared to be a rather large tumor, and it was probably pancreatic cancer. I asked her, if it was cancer, what could I do, and she said that there was probably nothing to do.

I was extremely angry with her response, but she actually did me a favor. I do not like people telling me what I can and can’t do, and because of her callousness, I was more angry than scared at that moment and determined to prove her wrong.

I went inside to tell Boaz and Yahav - I was terrified but ready to do whatever I had to. We then made the difficult calls to Netta and Eden. Unfortunately, we all know, only too well, what this horrible disease does. My Mom died from this in 2006, and my uncle died from it in 2014.

I had gone to see my family doctor, Dr. Gates, the Monday before because I was having stomach pains, and I could not eat much. She initially thought that it was just my irritable bowel acting up. We had had a rather stressful year to put it mildly. My Dad died from lung cancer in November 2015, and my father-in-law and our beloved dog, Holli, had both died from cancer in April 2016. I told her that this felt somehow different, and I am forever grateful that I listened to my body and spoke up. She heard me and sent me the next morning for an ultrasound, where they saw a mass on my pancreas. On that fateful Thursday morning, I had gone for an MRI to further investigate what this was.

Dr. Gates called me early Friday morning and asked if she could contact my GI - Dr. Jeffrey Medoff. I am eternally grateful to him for giving me the best possible advice by referring me to Dr. Russell Howerton at Wake Forest Baptist Medical Center, and we got an appointment for Tuesday morning at 8:00 am. Everything really moved very quickly.

Honestly, that weekend passed in a blur. It was so surreal - I always knew deep down that someday I would deal with cancer. My grandparents and both my Mom and Dad had all died from cancer.

From that first day, we were a team, and all five of us decided we were going to fight it together - we were not going to let it beat us. My husband and our girls fought with me every step of the way.

Fortunately, Boaz had just quit his full-time position teaching, and scaled back to part-time hours so he could focus on his master’s studies. The timing could not have been more perfect as he had far more flexibility which enabled me to go to Wake Forest for treatment which is further away than our local hospital. Yahav, our youngest daughter, had just graduated from UNC- Charlotte a few months previously, and she was home whilst looking for a full-time job. She immediately took her name off all the job web sites and said that she was here to help me until I finished treatment. This was a major game changer for me.

Another major bonus was that my Chief Angel and friend, Ellen Nelson, had just retired and was also there for me whenever I needed - way more than I could ever have hoped for, or expected. We were ready to face this challenge head on, and to do whatever was required to beat this!

Chapter 2: The Butterfly Effect

In October 2015, my eldest daughter, Netta, was on the verge of making a big change in her life. She was not sure if she was doing the right thing, and, as always, she turned to her Granny.

It was a cold, dreary day. She was hiking in the mountains, and she shouted to her Granny, Please give me a sign that I am doing the right thing!

A big yellow butterfly appeared out of nowhere and flew around her. She called me very excited to tell me that Granny approved of the path she had chosen. That was the first time we became aware of my Mom showing up as a yellow butterfly, but definitely not the last.

My Mom has been with my family and me every step of the way on this journey. Whenever I need her, and sometimes just because, a yellow butterfly appears. Even my husband, who truly thought we were crazy, now looks out for yellow butterflies. As far as I am concerned, a large part of why I am here today is because my Mom is by my side.

I was very close to my parents, especially my Mom, and a lot of how I live my life is very influenced by how I was brought up. My parents were a very important part of all our lives. I was born and grew up in Port Elizabeth, South Africa. At the age of 22, I went to live in Israel where I met my husband Boaz, and where our three wonderful daughters, Netta, Eden, and Yahav were born. After I had lived in Israel for almost 12 years, our girls were ages: seven, five, and one, we decided to go and live in South Africa for a year to be close to my parents. We ended up staying for six, and our girls had the opportunity to spend a lot of quality time with their grandparents. In August of 2001, we made the difficult decision to leave South Africa to come to Greensboro, North Carolina. It was incredibly hard for us to say goodbye, but we knew that it was the right thing to do for our family’s future. The plan always was that when my parents retired, they would join us here. Unfortunately, my Mom never made it here, but my Dad did come not too long after my Mom died. Although they are no longer with us, they are still very much part of our daily lives.

March of 2006 was when our lives changed forever.

My Mom passed away from pancreatic cancer. She was so much more than just my Mom. She was my closest friend, my confidant, and my role model, who I spoke to at least three or four times a day despite living on different continents. She was also the most beloved and amazing mother-in-law to Boaz, and Granny to our three daughters. She truly left a gaping hole in our lives when she died.

Whilst talking to Maria, my wonderful friend and editor, who asked me where I got the strength to deal with all I have been through over the past four years, I had a revelation which was really kind of mind blowing. I have often wondered this myself.

I had to watch both my Mom and Dad suffer and pass away from cancer. Both these awful experiences left indelible marks on me. When I got diagnosed, I knew way more than I had ever wanted to about this awful disease.

As shocked and horrified as I was, I had kind of expected it in some form or another. Now that it was here, I could deal with it. I am positive that if I had not gone through this with both my parents, I would have been totally overwhelmed and lost. Maybe because I had dealt with this on such a personal level before, it somehow prepared me to deal with my own journey. Even in death, my parents influenced me and continued to teach me how to live my life. From having seen what they went through, it somehow made me stronger and helped me to deal with my own challenges.

As parents they gave me the gift of life and love and they were always there for me and my family. Even though they are not physically with us, they are still an integral part of our lives. Their memories and strength live on in us, helping us face and deal with whatever life brings. We are all stronger and better people for having had them in our lives, and hopefully they will continue to be with us and help guide us for many years to come. We feel that both my parents, but especially my Mom, have been with us on this journey. That feeling of knowing she was always there, looking out for me and giving me and my family so many signs that she was with us every step of the way, continually gave us strength and hope that we would manage to beat this horrible disease.

In addition, there were many incredible people on this journey who gave me and my family support, courage, and strength.

Chapter 3: The Journey Begins

Tuesday morning came and Boaz and I went to Wake Forest Hospital to meet with Dr. Howerton. Just going to the hospital for the first time was incredibly overwhelming - it is so big and there are so many people. We got lost more than once that day.

Dr. Howerton came in, and I immediately felt comfortable with him. He had worked in Durban, South Africa several years previously and loved it, so we spent the first few minutes talking about South Africa.

When we had run out of excuses to talk about other things, we discussed the issue at hand. The news was not good. On one hand, we had caught the cancer early; it was still relatively small and had not spread. But it was in the worst position possible. It was in the head of my pancreas, attached to both a vein and an artery. The doctors could not cut both - it was too risky. The Whipple surgery is performed for pancreatic cancer, but it is extremely high risk and dangerous. Not many patients are eligible. I knew all about this surgery - I had done the research many years ago when my Mom got sick. Since my tumor was inoperable because of its position, my only chance was to have chemotherapy and radiation to aggressively try to shrink the tumor enough to be off either the vein or the artery. If they could do this, I had a chance at eligibility for the Whipple surgery.

I then asked Dr. Howerton if I could not do this surgery, what options did I have. He told me about an experimental surgery being performed in Kentucky with decent results. Unfortunately, no long-term data was available because it was too new, but at least I had another option. My appointment with Dr. Howerton left me feeling very scared, but confident that I was in good hands. He gave me his cell phone number and told me to call him with any questions. I never used it, but it was a comfort having it. I knew he would be there and do whatever he could to help me.

As scared as I was, I was not giving in; I was going to fight as hard as I could.

I had to wait over a week for an appointment for an endoscopy. I needed this procedure to verify that what we suspected was true. Based on my family history, there was very little doubt as to what the diagnosis would be. In the meantime, Dr. Howerton decided to get the ball rolling by setting up appointments for me with both the radiologist and the oncologist so that once we got the official results, we could start treatment as soon as possible after diagnosis.

Early in the morning, three days after my appointment with Dr. Howerton, we were going back to Wake Forest Baptist Medical Center to meet with the radiologist, Dr. Blackstock. My phone rang. On the other end was the doctor’s resident telling me that there had been a mistake. Since I did not have an official diagnosis, I should not come for my appointment. As this was protocol, there was no reason to meet with the doctor yet.

Fortunately, I am incredibly stubborn and do not like being told what to do, so instead of getting upset, I got mad. I explained nicely to the resident that I had an appointment and was on my way to meet with Dr. Blackstock.

That phone call, in retrospect, acted as a catalyst for the courage I needed. By the time Boaz and I got to the hospital, I was more angry than scared, and I was ready for a fight. Fortunately, the staff decided it wasn’t worth fighting with me, and we got taken back for my appointment. The joys of a teaching hospital are that there are sometimes more people than you want to speak to before you actually get to the doctor. Most of the time, that did not bother me at all, but that day I was ready and waiting for anyone to tell me I should not be there, and that I would have to come back. First, we met with the resident who had called me. She was very stressed that I was there and was extremely worried about what Dr. Blackstock was going to say about it. Next, the nurse, Jay, who later became one of my firm favorites, came in and went over most of the same things. Eventually, Dr. Blackstock came in with three students in tow. There were several people crowded into a tiny room, and by that time I was exhausted, terrified, and still angry - not a great combination, but my adrenaline was flowing!

Dr. Blackstock looked at my chart and said there was really no reason for me to be there as we did not know what was wrong with me yet, so we could not decide on treatment. I took a deep breath, I did not look at Boaz who was stressing about what I was going to potentially say, and I said, I beg to differ. He looked at me totally shocked and with a raised eyebrow said, I beg your pardon? I answered, With all due respect we are 99% sure that I have an adenocarcinoma of the pancreas. The research I had done when my Mom had gotten sick ten years previously was kicking in. Dr. Blackstock looked at me. Who exactly is ‘we’? I answered, Dr. Howerton and myself. And furthermore, I added, if by some miracle after we get the results from the endoscopy and we find that it has all been a terrible mistake, then no one would be happier than me. All that would mean is that I would have wasted a couple of hours being here, and you will get paid either way, so please carry on and let us know what our options are. He then proceeded to lay out a plan of treatment and gave us all the awful statistics. When he finished, I asked him if he was done, and when he said yes, I thanked him for the information and added, I am just letting you know that I have no intention of ever being a negative statistic," and walked out.

I was on a high that day - I had stood up for myself and at least felt like I was doing something positive, not just sitting and waiting.

I have to admit, before my next appointment with Dr. Blackstock a few months later, after I had finished chemo, I was terrified. I hadn’t exactly been nice to him, and now my life was literally in his hands.

Turns out, I had nothing to worry about. He is a phenomenal doctor, and I grew to love and respect him. I enjoyed my weekly appointments with him while I was going through radiation, and though I was not sorry to finish radiation, I missed our weekly discussions. Two days after that first appointment with Dr. Blackstock, we were once again in the car going to another appointment. This time to meet with my oncologist, Dr. Sorscher. His office is in a Wake Forest satellite in Clemmons - a fifteen-minute longer drive than the hospital. The hospital is about a 30-minute drive - which for a small town like Greensboro is considered far. From the first moment we walked in there, we felt comfortable. The staff was incredibly warm and welcoming, and it was much smaller and more personal than the hospital. First, we met with a wonderful nurse, Melissa to do all the paperwork. She suggested that if I was going to do chemo, I should consider coming to Clemmons rather than the hospital. Our first reaction was that it’s a longer drive for us. She explained that the Clemmons office is much smaller and quieter than the hospital, there are fewer people and there is an opportunity for me to get to know all my nurses. It might be a longer drive, but we would not waste time looking for parking, which is always a problem at the hospital. So, we would have a much shorter walk from the car to the clinic. Especially after chemo, that made a huge difference, as I felt like I was only partially alive when I walked out. This was the best advice we could have gotten. I would not have dealt as well with the chemo if it had been done at the hospital. It is just too big and too impersonal. This intimacy aided my recovery. My chemo nurses became my second family and as much as I hated having chemo, I always wanted to go to Clemmons to visit Dr. Sorscher and my angels. I still enjoy going to visit them all.

Upon meeting Dr. Sorscher, we immediately knew we were in the right place. He is incredibly knowledgeable and always open to discussing any of our suggestions. He explained all the different options and listened to everything we brought to his attention.

One of the first things he wanted me to do was to go for genetic counselling to be tested for BRCA. There was a very high likelihood that I was BRCA positive (+ve) because it was very prevalent on my Mom’s side of the family. Although my Mom was never tested, both her brother and sister were BRCA +ve. He explained that the treatment for a BRCA mutation pancreatic cancer takes a different course. He wanted to try a chemotherapy that was having positive results in BRCA patients. From the beginning, we realized how lucky we were to get this amazing doctor who was totally up to date on all the latest findings, and who was constantly reading and researching the latest techniques and ideas for treatment. We continued the meeting assuming that I was BRCA +ve. I was going to get tested before beginning chemo, so adjustments could be made if necessary. He would not allow me to have chemo without meeting with me first. Blood work was not enough for Dr. Sorscher; he