SANDRA: REDEFINING THE METASTATIC JOURNEY

Sandra Elhilali

Our journey with Cancer started on the morning of Mother’s Day, 2017. In truth, looking back, it started long before then. I had been feeling tired for a long time, but who wouldn’t be? I was a mom to two young children. I had a demanding career, and we were a busy household. I was trying to do it all, making dinners, driving kids to their activities, helping with homework, all after putting in twelve-hour workdays, trying to meet $9M quotas in the Public Health Sector for a prominent Telecommunication company. Eventually, it all became too much. I was working longer days and would come home exhausted. My family were getting less and less quality time with me.  I would spend free time on the weekends catching up on chores and sleeping the rest of the time. Spending time with my husband and the kids outdoors biking, hiking, and skiing doing things that I loved was becoming infrequent and became nonexistent in late 2016. Things were becoming so overwhelming, that I gave up my career that I had poured all my heart into for 15 years. A career that was a labor of love – developing communication strategies for hospitals and outpatient care centers to improve the quality of health care for Canadians. The only aspect of my job that I didn’t enjoy was the time spent in hospitals in meetings in windowless, sterile offices. When I left my position at TELUS, I vowed that if I never entered a hospital again, it would be too soon. Little did I know that I would be spending more time in hospitals than ever before.

The tiredness became insurmountable. It wasn’t uncommon for me to fall asleep on my son’s bed from sheer exhaustion of having just made it. I also had a recurring sharp pain on my right side that I dismissed as a pulled muscle. My family physician was stumped. My bloodwork was near perfect, with the one exception of low iron levels – all easily treatable. We didn’t realize then that the symptoms I was experiencing were all warning signs. We had no reason to suspect Colon Cancer, as my FIT test came back clear. My physician confidently declared “you are the picture of health” and handed me a prescription for Iron tablets. 

I went home feeling frustrated, and disappointed with myself. I had failed my career, and I was failing my family, no longer having the energy to put a decent meal on the table. I had convinced myself that I was simply depressed, or worse yet, being lazy. It still didn’t explain this pain on my right side that now included my right shoulder and ran down my right arm, often causing me to lose all feeling in my right hand. I would drop dishes regularly and make light of it, often declaring “Opa, mom’s done it again.” The months went by and my health was declining rapidly now.

It wasn’t until early May of 2017 that I found myself at our Walk-In-Clinic with my daughter. We were there for her sore throat. When the doctor was done assessing her, my 11-year-old suggested that I tell the doctor what was happening with me, and so I did. The doctor listened as I listed my symptoms. She looked over my recent labs and stated, “I am going to schedule you for the dreaded C word (colonoscopy) to rule out the other dreaded C word (Cancer).” I left her office relieved that my daughter would be fine and incredulous that she thought I needed a colonoscopy. What non-smoking, active 43-year-old needs a colonoscopy, I thought to myself.

I woke from what would be first of many colonoscopies to see a pained expression on my GI’s face while asking if my husband was with me and to wait in his office so he could speak with us both. I thought to myself that he was being awfully formal for delivering the news that he found a bleeding ulcer, something that I had before. I was in disbelief when he announced that he had found a growth on my sigmoid, and there was a chance it was cancer. I was referred to a GI specialist, with an appointment for September; an appointment that I never made it to.

Bright and early on May 14th, I woke to the laughter of Jasmin & Eric then 8 as they leaped onto my bed, smothering me with hugs as they declared ‘Happy Mother’s Day!” followed by pleading with me to get ready for a day at our local park by the lake, as was our family tradition. I was busy packing our things for our picnic when my husband said, “You don’t look well, you’re shaking like a leaf and you’re so pale. We should go to the hospital to be safe. I’m worried about you.” I knew he was right, so I promised to go to the ER, if he vowed to take the kids to the lake where I would meet up with them afterwards. With that my dearest friend Louise and I headed to the hospital, at her insistence that she come along.  She spent numerous hours with me as I waited to be seen. I eventually got her to agree to going home to her family. I didn’t see any reason for her special day to be ruined by my shenanigans. It is now early evening, and my husband is now on his way hoping that I’d be done soon, and we’d be able to salvage this day. After countless blood draws, followed by scans, I am sitting on the edge of the gurney in a hospital ER when I notice a group of people in white lab coats gathered around a light board to look at images, that I assume are x-rays. Some have their head tilted, while others scratch their head, I can only imagine that they are doctors and these images have them puzzled. I grow increasingly uneasy as one turns back to look at me. I frantically call my husband who is now parking the car, and ask him to hurry, I have a bad feeling about all of this. With my husband’s arrival, the doctor who I had seen gathered with the others walks towards us with the images. Sharif and I reach for each other’s hand as we hear the words that will forever change our lives – “I am so sorry to tell you that you have cancer.” He is still speaking, but I can’t hear a word he’s saying. All I can do is hold on to Sharif’s hand, while the ground beneath me falls away. I was in disbelief. Surely, they have this wrong. It wasn’t until much later that evening, that a kind radiologist sat with me while we counted the tumors on my liver that now resembled a spotted dalmatian. We never did know how many there were exactly as we felt we didn’t need to continue once we reached twenty. The CT radiology report simply read “there are too many to count.”   

I was admitted that evening and met with the Oncologist the next day, where we learned I was incurable, I had roughly 5 to 6 months, chemo would be palliative and I most likely would not be returning home. As devastating as the news was, I had a sense of relief in finally knowing what was wrong with me. Finally, we could get to the business of recovery. With that I began chemotherapy one day after being diagnosed.

I spent my days chatting with nurses and other cancer patients, and my nights reading medical journals, trying to learn as much about my disease as possible. I focused on the probability of surviving Stage IV CRC, which was bleak. I wanted no part of the timeline I was given, so I shifted my attention to finding cases where stage IV cancer patients were not only outliving their timeline but thriving. 

I had an incredibly positive response to chemotherapy, with a drastic drop in CEA to 824 from an initial skyrocketing number of 6082. After one month of being in hospital I was discharged, just in time to attend my daughter’s dance recital. In July I transferred my care to an Oncologist that shared my lofty vision of one day being operable. Our highly regarded and cherished Oncologist was running a clinical trial for HAI pump chemo. A process where a hockey puck sized pump is implanted in the abdomen, delivering chemo directly to the liver. The hope was to reduce the volume of tumors on my liver, so that we could get to a liver resection. This was the first time we had discussed the removal of my primary tumor on my colon.  In that moment I knew I wanted to take this gift of hope and pay it forward by raising awareness. My Oncologist strongly suggested I reach out to Filomena at CCRAN. Little did I know just how much Filomena would forever change the trajectory of our family’s life. I will never forget the first time I spoke with Filomena. I was still coming to terms with our diagnosis and was so uncertain of our future. Having done so much reading, I was left with more questions then answers. Filomena was reassuring, and she had several questions of her own for me so that she could fully understand the gravity of our situation and how to best go about helping us. That first call with her was the beginning of a lifelong friendship and a profound appreciation for the work that she does through CCRAN.

A few months later in October, I received my Codman pump and learned that my primary tumor on my colon was all but gone, sparing us from an ostomy. The dream of seeing our children graduate from elementary school was becoming a real possibility.

While HAI did not get us to a liver resection it did keep my cancer stable long enough to qualify me for a Living Donor Liver Transplant at UHN. I received my gift of life from our guardian angel, Jorge on May 1st of 2019. We have been cautiously NED for two years now and our daughter has since started high school, with our son not far behind her.  

When we first started considering Liver Transplant, I had a lot of hesitation and so many questions. What does life after transplant look like?  Is it safe for our living donor? How do we go about finding our special donor? Thankfully, the Transplant team and our extraordinary Oncology Transplant Surgeon at Toronto General Hospital patiently addressed our concerns. 

For months I agonized over whether transplant was the right way forward. Liver transplants for mCRC had never been done before in Canada. I could possibly be the first, and that’s when I connected with   the very first and only Living Donor Liver Transplant recipient from mCRC in North America. Carol’s journey was so remarkably like my own. She was an active, healthy young mother to two children, had undergone HAI, and finally received her gift of life in the spring of 2018. Carol’s willingness to openly share her journey, gave me the confidence to move forward. 

We often don’t recognize how invaluable our personal stories are to others. They give us hope, when too often there is so little. Finding CCRAN was like finding my tribe, an empowered group of likeminded individuals looking for a clear path forward. I am forever grateful to Filomena for having the vision to create this safe place for us to voice our deepest fears and share our personal victories. I have gained so much knowledge from the research that Filomena brings to us. It is this shared knowledge that empowers us to advocate for ourselves. It is solely through her encouragement that I lend my voice to raising awareness of this disease. Her passion and dedication are both inspiring and infectious. 

It is hard to believe that it has been four years since I was diagnosed. As I reflect on our journey that has been filled with obstacles, disappointments, and sadness; it has also brought us hope, special bonds of kinship that will never be broken. I will carry our dear friends who were called away far too soon in my heart. I will continue to raise awareness for as long as I possibly can, in honor of them. I will cherish this gift and the many blessings I have received by crossing streams, flying down mountains, and chasing our dreams. 

In Gratitude

Sandra Elhilali

Stage IV Survivor

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