Wendy’s Cancer Journey

30 Stories in 30 Days™ // April 2023

My cancer journey began in 1994—I woke up one morning and washed my face as usual, but this time I felt a little ball under the left side of my jaw. It was unusual enough for me to know that I needed to visit my primary care doctor as soon as possible. He then referred me to an ear, nose and throat (ENT) surgeon.

When I met with the surgeon, he twisted and turned my face for several moments and then he stated that he would not operate on my face because, in his words, “you will not sue me, and I will not mess up your face; but I will refer you to the best in the business.” He referred me to another ENT surgeon, who agreed to remove the mass.

After the surgery, I learned that I had a benign parotid tumor. The doctor did not really give me a lot of information about the tumor and its origin, nor did I ask a lot of questions. He did share that had I not acted quickly in getting medical attention, my face would have eventually been paralyzed. He explained that the tumor was rapidly growing and would have wrapped around my facial nerve.

Fast forward to one morning in Spring 2022. As I washed my face, I felt a small, squishy mass on the inside of my cheek. Given my history, I went to see my primary care doctor the next day.  The doctor said that it was nothing to worry about. A couple months later, I discussed it with my dentist, and she also thought that it was nothing to worry about.  However, I decided to still keep a watchful eye on the mass, and when it began to change, I became really concerned. 

I felt respected as a person and a patient, and I truly felt as if I was part of a family. 

Coincidentally, as my worry deepened, I needed a CT scan and MRI of my head after a fall. When the results came in, my primary care physician called me and told me I needed to see him as soon as possible. He shared that the MRI showed a growth on my face, and he referred me to a maxillofacial surgeon.

The surgeon wanted me to get more imaging done, but I had a gut feeling that he was not the right doctor for me. I also felt a need to change my primary care doctor, and I was fortunate enough to find a new doctor who did not dismiss my concern. He carefully questioned and examined me, and immediately recognized that I was dealing with a very serious issue. Two of the doctors he referred me to did not have availability for months, but thankfully the third surgeon could see me quickly.

Once I met with that surgeon, I knew I was where I needed to be and didn’t need to see anyone else. First, the office staff were welcoming, the nurse and other team members were friendly and efficient, and the doctor was equally as welcoming. I also observed that there was mutual respect between him and his team, and that impressed me. This surgeon explained each course of action that he would take and let me know that my input would be integral to my care. I experienced a new level of  patient care with this surgeon’s team.

Having a positive attitude was integral to my peace of mind.

I had some scans done and discovered that the tumor was in the bone. I also had biopsies of the mass and lymph nodes done along with a few scans, and in November 2022,  I underwent a bone biopsy under anesthesia, performed by my ENT specialist and the maxillofacial surgeon. It was at the follow up visit after the bone biopsy that the possibility of cancer was raised. Just hearing the word ‘cancer’ was a shock to my system; my mom and youngest sister both died of cancer. In addition, learning about what the surgery and recovery would entail was overwhelming and a lot to digest. 

However, both the maxillofacial surgeon and ENT surgeon reached out to my selected team of family members on a Zoom call. One of the doctors was overseas attending a conference, and he joined the call, even though it was around 11 PM in the location where the conference was held. The doctors explained the upcoming procedure, its benefits, and risks. They answered all the questions that we had. That outreach was a relief to the family and me because now we were well-informed, and my family got a chance to meet my surgeons. My main ENT surgeon also spoke with my primary care doctor before the surgery, so my primary care doctor was able to support me in a measurable way.

The biopsy confirmed that I had a giant cell tumor of the mandible, and I was told that I would only learn whether or not it was malignant when the doctors would receive the pathology reports after surgery. I underwent surgery in January 2023, performed by three doctors—two ENT specialists and a maxillofacial surgeon.

I accepted the gravity of my situation. I knew the tumor had to be removed, I knew the risks involved, and I felt assured that I was in good hands.

I went into the surgery without fear. The main reason why was my deep faith in God. I prayed a lot and numerous prayers were said on my behalf. My church families in New York and the Caribbean, and individuals in many different states and countries prayed for me. I went into surgery with the belief that God would hear and answer those prayers. 

Other major factors in my positive approach were my doctors, their teams, and the way I was prepared for surgery. My doctors involved me in the decision-making process every step of the way. I felt respected as a person and a patient, and I truly felt as if I was part of a family. They not only prepared me physically, but also emotionally and mentally for my surgery, and the team members took the time to listen to my concerns. They did their absolute best to facilitate things for me and dispel any fears/concerns that I may have had. I felt like they saw me as a person, not just a patient to operate on or a disease to cure. Everyone was so pleasant and welcoming, and worked together as a well-oiled machine. I didn’t see any of the typical arrogance that you can sometimes see from physicians. There was respect all around, and that made me feel comfortable.

Having a positive attitude was also integral to my peace of mind. I accepted the gravity of my situation. I knew the tumor had to be removed, I knew the risks involved, and I felt assured that I was in good hands. This was my reality, and there was nothing I could do to change it. I had turned it over to God, and so, it was out of my hands.

Prior to my surgery, my ENT surgeon had talked to me about a nurse in the operating theatre named Janice, who was from my country of birth. The morning of my surgery, I met Janice. It was at that moment that it registered that she had the same name as my youngest sister who had passed away. Then she told me that her middle name was “Wendy,” like mine. Was that just coincidence or was it a sign from God? It almost seemed like a thumbs up that everything would be okay. At that moment, I felt comfortable and no longer afraid. It was an amazing moment. I started laughing and that was the last thing I remember before I went under anesthesia.

My advice to anyone going through this… Build a strong support system… To better deal with a difficult situation, seek knowledge about it.

The hardest part of recovery was having my jaw wired shut for a week. The amount of mucus I was excreting, and having the tracheostomy tube in place was really rough. I just wanted it to be over. But the care was so superb that I felt confident that I would get through it.

The care in the ICU was amazing. Everyone I encountered was kind and very responsive; my comfort was seemingly important to all. I can’t put a finger on what one of my favorite nurses did to stand out so much, but she was fantastic, and she has a forever place in my memories.

One time, it must have been around 2 am, and a nurse wanted to take some blood. I told her I didn’t want to. People find it difficult to find my veins, and having so many needle sticks in the hospital was really hard for me. So after telling her that, she gently took my hands in hers and said, “Oh boy, your hands are so dry!” She found some lotion, sat next to me, and massaged my hands. It was such a kind and compassionate interaction, and because of that, I don’t even remember if she took blood. I probably drifted back off to sleep at some point, and it was like an angel came to visit me. My only regret is not remembering her name.

There was one time in the ICU where I struggled with my tracheostomy tube and was terrified that I would choke. The doctor came and cleaned it out, but it made me scared to go home with the tracheostomy tube. The two things I prayed about in earnest were that I would not go home with my jaws wired or with the tracheal tube in place. And ultimately, I did not.

I’m lucky to have had superb support from my primary care physician, surgeons, biological and extended family. My primary care doctor structured my appointments so I would meet with him after each meeting with my surgeons.  I was able to provide him with information while it was fresh in my mind.

I consider myself resilient, so even if something knocks me down for a bit, I get up and deal with reality. I ask myself, “what are my options—what can I change?” If I can’t change it, it’s not worth spending time worrying about it. I know some people prefer not to know all the details of their medical conditions, but I like to know so I can make informed decisions.

My advice to anyone going through this…

1. Build a strong support system. I put together a team of individuals who I knew had my interest at heart and who had differing levels of expertise. My team consisted of my son, niece, four cousins – one of whom is an oncology nurse, and another manages a health-care facility. I communicated with them via a Whatsapp group,  and they were my “I got your back” team.
   
   Before your surgery, start thinking about those individuals who will be there for you—day or night. Do not limit yourself to just family members, but think about different groups you can draw from: a support group, spiritual organization, neighbors, friends, family, etc.

2. To better deal with a difficult situation, seek knowledge about it. When you know what’s going on, you can discuss it with others and come to terms with it. In hindsight, I wish I had better understood the challenges of being unable to open my jaw. If I had known more about what to expect from having my jaw wired shut, I would have changed my diet a few weeks before surgery. I just feel that I would have been in a better condition, physically, had I gone on a plant-based diet.
3. If you have a doctor who doesn’t listen to you, that may not be the right doctor for you. Look for someone who will help you understand, empathize with you, and treat you with respect—not just someone who tells you what to do. It’s not fair to have to fight against doctors while experiencing pain and suffering. At minimum, get a second opinion whenever your intuition tells you something that is not working for you.
4. Prior to your surgery, make a list of important phone numbers. You should know how to contact your doctor – at any hour – in the event of an emergency when you are discharged from the hospital. While you may not be able to speak to the doctor, you should be able to reach some member of his team at any hour. Also, share that information with your support team. In addition, your support team should have a way to contact each other if necessary, so make sure you have a written list of important numbers.
5. Keep a positive attitude and have strong spiritual support. I can’t emphasize enough how important it was for me to channel the power of prayer and faith in God to get me through this. I strongly encourage you to take care of your mental and spiritual health in whatever way best appeals to you.